Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "Just Humor Me” by Dr. Stacey Hubay, who is a Medical Oncologist at the Grand River Regional Cancer Center. The essay is followed by an interview with Hubay and host Dr. Lidia Schapira. Dr Hubay share how even though cancer isn't funny, a cancer clinic can sometimes be a surprisingly funny place.

TRANSCRIPT

Narrator: Just Humor Me, by Stacey A. Hubay, MD, MHSc  

Most of the people who read this journal will know the feeling. You are lurking at the back of a school function or perhaps you are making small talk with your dental hygienist when the dreaded question comes up—“So what kind of work do you do?” I usually give a vague answer along the lines of “I work at the hospital” to avoid the more specific response, which is that I am an oncologist. I have found this information to be a surefire conversational grenade, which typically elicits some sort of variation on “wow, that must be so depressing” although one time I did get the response “Great! I’m a lawyer and a hypochondriac, mind if I ask you some questions?” After I recently dodged the question yet again, I found myself wondering why I am so reticent about telling people what I do. While discussing work with strangers in our hard earned free time is something many people wish to avoid, I think for me a significant motive for this urge to hide is that I do not actually find the cancer clinic to be an overwhelmingly depressing place. Admitting this to others who are not engaged in this work can lead to at the very least bafflement and at worst offense to those who believe that laughing while looking after cancer patients is a sign of callousness. I am an oncologist who laughs in my clinic every day.

Of course, the oncology clinic is sometimes a bleak place to work. Cancer has earned its reputation as a fearsome foe, and the patients I see in my clinic are often paying a heavy toll, both physically and emotionally. Many are grappling with their own mortality, and even those with potentially curable cancers face months of challenging treatment and the torture of uncertainty. Yet somehow, perhaps inevitably, the cancer clinic is not just a place of sadness and tears but also a place of hope and laughter.

Although most of us recognize humor and use it to varying degrees, few of us consider it as an academic subject. A few lucky souls in academia have taken on the task of developing theories of humor, which attempt to explain what humor is, what purpose it has, and what social function it serves. Although there are almost as many theories of humor as there are aspiring comedians, most explanations fall into one of three categories: relief theory, superiority theory, and incongruous juxtaposition theory.1 Relief theory holds that people laugh to relieve psychological tension caused by fear or nervousness. I suspect this is the most common type of humor seen in a cancer clinic given the weight of fear and nervousness in such a fraught environment. The second category, people being what we are, asserts that sometimes we laugh out of a feeling of superiority to others. It goes without saying that this sort of humor has no place in the clinician patient interaction. Finally, we laugh at absurdity, or as Kant put it, at “the sudden transformation of a strained expectation into nothing.”2 This last category is also surprisingly fruitful in the oncology setting.

Laughter in the cancer clinic is still to some extent considered taboo. Near the start of my oncology training, I remember laughing until my stomach hurt with my attending staff in the clinic workspace between seeing patients. What we were laughing about escapes me now, but what I do clearly recall is an administrator in a buttoned-up suit striding over to us in high dudgeon. “Don’t you people realize this is a cancer clinic?” she admonished us. “This is not a place for laughter!,” she added before striding off, no doubt to a management meeting or some other place where the policy on laughter is more liberal. At this point, my attending and I looked at each other for a beat and then burst into helpless gales of laughter. We do not tend to think all that much about why we are laughing at something, but looking back now, I think at least part of the reason was the absurdity of a person so unfamiliar with the culture of the cancer clinic presuming that physicians and nurses somehow park their sense of humor when they arrive at work and turn into a herd of gloomy Eeyores. 

We oncologists are starting to come clean about the fact that we laugh in the clinic and there is now a modest amount of work in the medical literature addressing the use of humor in oncology. One survey of patients undergoing radiotherapy in Ottawa found that a stunning 86% of patients felt that laughter was somewhat or very important to their care, whereas 79% felt that humor decreased their level of anxiety about their diagnosis.3 If we had a drug that decreased anxiety levels in 79% of patients, had minimal to no side effects when used correctly, and cost the health care system zero dollars, should not we be using it? 

Sometimes, it is the patient or their family member who introduces an element of humor into an interaction as on one occasion when my patient was filling out a pain survey which included a diagram of the body on which he was asked to circle any areas where he was having pain. As his wife ran through a detailed list of his bowel habits over the past few days, the patient circled the gluteal area on the diagram he was holding, pointed to his wife and said “I’ve been suffering from a pain in my ass doctor.” His wife looked at him pointedly for a moment before the two of them started laughing and I joined in. 

Sometimes, a patient’s use of humor serves to level the playing field. Patients with Cancer are vulnerable, and the physician is an authority figure, meting out judgments from on high. My patient from a few years ago was having none of that. I met him when he was referred to me with widely metastatic lung cancer, a diagnosis typically associated with a dismal prognosis. The patient, however, was not buying into any of the usual gloom and doom that is customary for these interactions. As his daughter translated the information I was providing, he tilted his chin down, fixed his gaze on me, and proceeded to smile at me in a disarmingly friendly way while simultaneously waggling his generous eyebrows up and down throughout the interview. Over the course of 45 min, I became increasingly disconcerted by his behavior until eventually, I was unable to finish a sentence without sputtering with laughter. If you think you would have done better, then you have clearly never been on the losing end of a staring contest. By the end of the interview, all three of us had happily abandoned any hope of behaving with more decorum. Laughter and the use of humor require a certain letting down of one’s guard, and the fact that all three of us were able to laugh together in this interview took me down from any pedestal onto which I might have inadvertently clambered. One study from the Netherlands noted that patients used humor to broach difficult topics and downplay challenges they faced and concluded that “Hierarchy as usually experienced between healthcare professionals and patients/relatives seemed to disappear when using laughter. 

If applied appropriately, adding shared laughter may help optimize shared decision-making.”4 Although it could be a coincidence, it is worth noting that several years after meeting this patient, I discharged him from my practice because he had somehow been cured of lung cancer. Perhaps laughter really is the best medicine. 

On other occasions, it might be the physician who takes the plunge and uses humor during a clinical encounter. The same Dutch study by Buiting et al noted that 97% of all specialists used humor in their interactions and all reported laughing during consultations at least occasionally.

One of my colleagues, a generally serious sort whose smiles in clinic are as rare as a total eclipse albeit not as predictable, managed to win over his patient with a rare outburst of humor. During their first meeting, the patient listed off the numerous ailments he had experienced in the past including his fourth bout with cancer which had prompted this appointment.

As he finished reciting his epic medical history, my colleague looked at him somberly over the rim of his glasses for a moment and asked “Sir, I must ask—who on earth did you piss off?” The patient was so tickled by this interaction that he recounted it to me when I saw him a few weeks later while filling in for my colleague.

Although humor is a powerful tool in the clinic, it is of course not something that comes naturally to all of us. Attempts at humor by a clinician at the wrong time or with the wrong patient do not just fall flat but can even be damaging to the physician-patient relationship. Even if a physician uses humor with the best of intentions, there is always the possibility that they will be perceived by the patient as making light of their situation. As Proyer and Rodden5 point out, tact is essential and humor and laughter are not always enjoyable to all people, or to borrow a phrase frequently used by one of my patients, “about as welcome as a fart in a spacesuit.” Socalled gelotophobes have a heightened fear of being laughed at, and with them, humor and especially laughter must be wielded with great care if at all. All I can say in response to the legitimate concern about the use of humor being misconstrued is that as with any other powerful tool physicians learn to use, one improves with time. As far as PubMed knows, there are no courses in medical faculties devoted to the fine art of the pun or the knock-knock joke. But even if we physicians cannot all reliably be funny on command, perhaps there is something to be said for occasionally being a little less self-serious.

One must also be mindful of patients with whom one is not directly interacting—to a patient who has just received bad news, overhearing the sound of laughter in the clinic corridor has the potential to come across as insensitive.

Moments of levity are therefore best confined to a private space such as the examination room in which physicians and patients can indulge in anything from a giggle to a guffaw without running the risk of distressing others.

The final reason I submit in support of laughing in a cancer clinic is admittedly a selfish one. While humor has been shown to have the potential to reduce burnout,6 the real reason I laugh with patients in my clinic is because it brings me joy.

The people at parties who think my job must be depressing are not entirely wrong. I have noticed that when I have a positive interaction with a patient based on humor or laugh with a colleague about something during a meeting, I feel better. Surprise! As it turns out, this is not just an anecdotal observation. In 2022, a study was published whose title was “Adaptive and maladaptive humor styles are closely associated with burnout and professional fulfillment in members of the Society of Gynecologic Oncology.”7 The SGO has not to my knowledge been widely recognized up to this point for their sense of humor, but I have a feeling that might change.

Humor is an essential part of the way I approach many situations, and given that I spend the majority of my waking hours at work, it is neither possible nor I would argue desirable for me to leave that part of myself at the entrance to the cancer center. So to the administrator who admonished my mentor and me to cease and desist laughing in the cancer clinic, I respectfully decline. My patients, my colleagues, and I will continue to laugh together at any opportunity we get. Joy in one’s work is the ultimate defense against burnout, and I for one intend to take full advantage of it. 

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Stacey Hubay, Medical Oncologist at the Grand River Regional Cancer Center. In this episode, we will be discussing her Art of Oncology article, “Just Humor Me.” 

Our guest disclosures will be linked in the transcript.  

Stacey, welcome to our podcast, and thank you for joining us.

Dr. Stacey Hubay: Thank you for having me. It's a pleasure to be here. 

Dr. Lidia Schapira: It is our pleasure. So let's start by chatting a little bit about what humor means to you and what led you to write this piece and share it with your colleagues. 

Dr. Stacey Hubay: I didn't realize how important humor was to me until recently. I just finished a Masters in Bioethics, which was 20 years in the making, and this was the first time I'd been writing anything that wasn't a case report for many, many years. And there was actually specifically a course called “Writing in Bioethics,” and this was the first thing that came to my mind. And I realized sort of how much humor there is in my day to day work life, which, because none of the other people in this bioethics class of 10 or 14 people were working in oncology, they were surprised. So I thought it would be interesting to write about that. And then when I started thinking about it, I realized how integral it is to most of, I guess not just my practice life, but the way I deal with life. And then I could see a thread going back all the way to the beginning of my practice in oncology, and I'm like, “I should write about this.” And I don't think it's unique to me either. I think it's probably many of us in this field.

Dr. Lidia Schapira: It is. So let's talk a little bit about humor in the practice of such a serious specialty as we tend to think, or people tend to think of, as in oncology. You talk about humor also connecting you with joy and practice, can you tell us a little bit more about that?

Dr. Stacey Hubay: I'm just as surprised, probably as anybody, at least when I first went into this field, which is now more than 20 years ago, how much happiness I found in the field. I meant what I said in the beginning of this essay. When I run into people or strangers, you're getting your hair cut or you're at your kid's volleyball practice, and people always say, “Oh, so what do you do?” And I always say, “I'm in healthcare.” And if they start drilling down, eventually I have to admit what I do. And I say, “I'm an oncologist.” And immediately the long faces and people say, “That must be so terrible.” And I'm like, “Well, it can be, but it's not as bad as you might think.” And they're like, “Oh, it must be very difficult.” And I know that avenue of conversation is closed once or twice. I think I did try saying, “You know what? I have a surprising amount of fun in my clinic with my patients.” And they were aghast, I think is the word I would use. And it made me realize sort of what a taboo it is for many people, including maybe some of us in the field, to admit that we sometimes enjoy ourselves with our patients in our clinics.

Dr. Lidia Schapira: So let's talk about that. Let's talk about joy, and then from there to laugh. I think the reason why laughter seems sort of stranger than joy is laughter assumes that we see some levity, humor. And some people would say, there's really nothing funny about having humor. And yet you seem to see it and find it and share it with your patients. So take us into your exam rooms and tell us a little bit more about your process.

Dr. Stacey Hubay: It's funny, when I think about the humor in my clinics, I don't see myself as the one who's necessarily sort of starting it, although maybe sometimes I do. I think perhaps it's just that I'm more open to it. And I think it's frequently the patients who bring it in with them. Obviously, we know patients in the oncology clinic, they're often very nervous. It's a very anxious time for them. And we are in a position of power compared to our patients, they're very vulnerable. And so sometimes the patient makes a joke, sometimes I wonder if it's a way of testing if that kind of relationship will work with you. They're kind of testing you to see if you will respond to that. And it's also a way of them relieving their own anxiety, because one of the theories about humor is just a way of alleviating tension. It makes sense that oncology is a place where humor would be welcome, because it's one of the most tense places, I think, in medical practice, although I'm not sure it's present in other places like at the ICU. 

So the patient often brings it in, and then you respond to it, and if you're on the same wavelength, it sort of immediately establishes this kind of trust between you and the patient. It's not something you can do with everybody. Sometimes some people will not be open to that at any time. And some patients, you have to get to know them quite a bit before that starts to come into the mix. But I find with most people, if you follow them for long enough and you have a good working, therapeutic relationship with them, just like you would the people you like, your friends, your family, that comes into a relationship almost unavoidably. And I used to think, “Oh, I'm not supposed to do that,” when I first came into practice. I'm a serious oncologist, which I am, and I can be a serious oncologist. And I also just didn't have the bandwidth for it. I think I was so kind of focused on, I have to know what I'm doing. Early in my practice, I didn't have the mental energy to devote to that. And then as that part became easier, I became kind of more open, I think, to that, coming into the interactions with my patients. And over time, I started realizing that was probably what I enjoyed the most about my working day. At the end of the day, I'd come home and tell stories, and my kids would be like, “It sounds like you have fun at work.” And I go, “You know? I really do. Surprisingly I do.”

Dr. Lidia Schapira: That's so very cool. I think there's so much wisdom in what you just told us, which is that at the beginning, especially when in the first few years of your practice, you really are so focused on being clinically competent that you may be just very nervous about trying anything. And then as you relax, you actually say in your essay that for some people, this may bring relief and may level the playing field. So if there is an opportunity and you're loose enough to find it, you may be able to keep that conversation going. It made me wonder, I don't know if you've had any experience yourself as a patient or accompanying a family member as a caregiver to a medical visit. Have you used humor when you are the patient or when you're accompanying the patient? 

Dr. Stacey Hubay: That's an interesting question. I haven't been a patient apart from my routine family medicine visits for quite a long time. But when I was much younger, I was a teenager, I did have that experience. I was maybe 15 or 16. I had some parathyroid issues. And I remember seeing these specialists in Toronto, and they were very serious people. I remember thinking, if I want to become a physician, because it was at the back of my mind at that time, I'm going to be a lot more fun than these people. I'm going to enjoy myself a lot more. And little did I realize how difficult that actually was at the time. But I found them kind of very serious and a little bit intimidating as a 15-year-old kid. I hadn't reflected on that before. I'm not sure if that's something that I'm deliberately pushing back against. I think now if I see a physician as a patient, I probably am much more willing to bring that in if the physician is open to it. But you can usually tell many physicians, you meet them and you're like, “You're not going to even try that kind of thing.” But if they're open to it, I think it would bring me much more fun as a patient as well. 

Dr. Lidia Schapira: Yeah. Do you teach your students or trainees or members of your team to use humor?

Dr. Stacey Hubay: That's a very interesting question. How do you do that? So I mentioned, I just finished this Masters of Bioethics, and one of the excellent courses in it was how to teach bioethics, which really was a course about how to teach anything. And most of us who are in medicine, we've spent a lot of time teaching without being taught how to teach. In my own practice of teaching, we mostly use one on one with people coming into our clinics and seeing patients with us. And I think mostly some of it's through observation. I will say to people who work with me that we all have to find our own style. It's important, no matter what your style is, to try and connect with patients, because you're trying to create a therapeutic alliance. You're on the same side. The way that works for me is you don't laugh with people you don't trust. When you're trying to make a plan with people in these difficult situations, I think if you've already formed this alliance where they realize you're with them, they're more likely to believe you and trust your recommendations. I tell trainees, I'd say, “This is my way of doing it. And if it works for you, that's wonderful.” But I can see that for some people it's difficult. 

Although even the most serious clinicians, one of my very good friends and colleagues who I mentioned in my essay and I talked about, he doesn't make a lot of jokes with his patients, which is perfectly reasonable, but the occasional time he does, the patients were so struck by it because they knew him as such a serious person. They bring it up, “Remember that time my doctor said this,” and they thought it was a wonderful thing. So it's difficult to teach. It's just how would the Marx Brothers teach someone else to be the Marx Brothers? It can't be done. Only the Marx Brothers are the Marx Brothers. Not that I'm comparing myself to the Marx Brothers by any means, but I think you find your own style. Maybe what I'd like to show trainees who come through with me is that it's okay to enjoy the patients, even in a very serious discussion.

Dr. Lidia Schapira: Yeah, I would almost say that it speaks to the fact that you're very comfortable with your clinical persona in that you can allow yourself to be totally human with them. And if human means that you can both sort of align around seeing some humor or cracking a joke, that is perfectly fine. I have a question for you, and that is that a lot of my patients in my practice, and maybe some of our other listeners come from completely different cultural backgrounds, and many don't speak the same language as I do. So for me, thinking about humor in those situations is impossible just because I just don't even know what we can both accept as funny. And I don't want to be misunderstood. Tell me a little bit about how to think of humor in those situations.

Dr. Stacey Hubay: That's a good point you make. It makes me think about how when I read Shakespeare's plays, we all think his tragedies are fantastic. And when I read his comedies, I'm like, “This isn't very funny.” Or if even when you watch sort of silent movies from the 1920s, I'm like, “Did people really laugh at this?” So you're right. Humor is very much of its time and place and its culture. And even people from the same time and place might not share the same sense of humor. That being said, somehow it still works with the people who are open to it. Somehow it's not necessary, because you've made a very witty joke, or vice versa, that we all understood all its complexities. It's more the sense that we're laughing together.  

And I talk about a gentleman that I met in my practice in this essay, and he didn't speak English, so his daughter was translating for us. And nobody was making any kind of verbal jokes or humor. And this was the first time I was meeting him in consultation, and he just kept making funny faces at me the whole time I was talking, and I didn't know what to do. I was completely bamboozled by this interaction. And it actually ended up being sort of one of the funniest visits I'd had with a patient. By the end of it, I could barely get a sentence out. And I thought, this is absurd. This is a very serious situation. This poor gentleman has stage 4 lung cancer, brain metastasis, but he just wouldn't let me be serious. So I think that humor can transcend cultural, linguistic boundaries amazingly enough. Again, if the person was open to it, this person was almost determined that he was going to make me laugh. It was like he'd set out that by the end of his visit, he was going to make sure that we were having a good time. And I was just, “I'm helpless against this. We're going to have a good time.” I remember coming out of the room, the nurses I was working with, they're like, “What was going on in that room? Is he doing well?”I'm like, “Well, in a way, yes, he is doing well.”  

At the end of this visit, we were all in a very good mood. But I'll sometimes use sign language, or I'll make some stab at French or whatever it is that the patient speaks, and then they just laugh at me, which is also fine, because they can kind of see that you've made yourself vulnerable by saying, “You know, it's okay if I can't speak your language.” And they just smile and laugh with me. So it's not that it's a joke so much, it's more that they just feel comfortable with you. But you're right, it is more challenging. It's something I wouldn't usually do in such a situation unless I had gotten to know the patient, their family, reasonably well. 

Dr. Lidia Schapira: Let's talk for a moment about wellness and joy in practice. What gives you the greatest joy in practice? 

Dr. Stacey Hubay: Undoubtedly the people that I see and I work with. When you go into medicine and you train, we all train in academic settings. And I had excellent mentors and academic mentors, and the expectation, because you're trained by people who are good at that kind of work and succeeded, is that you might want to pursue that, too. And it took me a while to realize that that's not where I get most of my joy. I like being involved with research and I appreciate that people are doing that work and I love applying that knowledge to my practice. But I get my joy out of actually seeing patients. That wasn't modeled a lot necessarily to us in the academic setting. It's taken me quite a long time to realize that it's okay to lean into that. If that's what I like about my practice and that's what I can bring to the interaction, then that's what I'm going to do. And I started looking back, it would have been nice to realize, it's okay. It's okay to be a clinician who really enjoys seeing patients and wants to do a lot of that. Again, different kinds of people become physicians, but a lot of the people we had as mentors, they had chosen academic careers because, not that they didn't like patients, they often did, but they really wanted to pursue the research aspect of it. And they would try to cut down on their clinical work and say, “It's nice if you don't have two clinics, you can focus on the research.” And I think to myself, but I like doing the clinics and I like seeing the patients, and it would be a shame to me if I didn't have that. 

It's not just the patients, but my colleagues as well, who are also great fun to have around, the nurses we work with. Really, it's the interactions with people. Of course, we get joy from all kinds of other things. In oncology, it's good to see patients do well. It's wonderful to apply new knowledge and you have a breakthrough coming from immunotherapy to lung cancer, melanoma. That sort of thing is fantastic, and it gives me joy, too. But I have the feeling that when I retire at the end of my career, I'm going to look back and go, “Remember that interaction with that patient?” Even now, when I think of when I started in clinical settings as a medical student, I remember, I think it was my first or second patient, I was assigned to look after an elderly woman. She had a history of cirrhosis, and she was admitted with hepatic encephalopathy and a fractured humerus after a fall. I didn't know what I was doing at all, but I was rounding every day. And I went to see her on the third day, she was usually confused, and I said, “How are you doing?” She looked at her arm and she said, “Well, they call this bone the humerus, but I don't see anything particularly funny about it.” I thought, “Oh, she's better.”

That's actually one of the earliest things I remember about seeing patients.  

Or the next year when I didn't realize I was going to pursue oncology. And I was rotating through with an excellent oncologist, Dr. Ellen Warner at Sunnybrook, who does breast cancer. We were debriefing after the clinic, and she said, “Someday, Stacey, I'm going to publish a big book of breast cancer humor.” And I thought, “I wonder what would be in that book.” And that's when I got this inkling that maybe oncology had just as much humor in as every other part of medicine. And that proved to be true. 

Dr. Lidia Schapira: What was it, Stacey, that led you to bioethics? Tell us what you learned from your bioethics work.

Dr. Stacey Hubay: I think it's because basically I’m a person who leads towards the humanities, and for me, bioethics is the application of philosophy and moral ethics to a clinical situation. And I think medicine, thankfully, has room for all kinds of people. Of course, you have to be good at different things to be a physician. But I always imagined myself, when I went to school, that after a class, you'd sit around a pub drinking beer and discuss the great meaning of life. And I thought, this is my chance to pursue that. And I was hoping to kind of– I didn't think of it as that I was going to this because I was interested in humor and joy in oncology, although I obviously am. I was thinking that I would be able to make a difference in terms of resource allocation and priority setting, and I still want to pursue those things. Things often lead you down a side road. And bioethics, for me, has sort of reminded me of what I like about this work. And because I was surrounded by many people who are not doing that kind of work, who were surprised how much I liked it, it made me think very carefully about what is it that I like about this. So the bioethics degree, it's finally allowed me to be that person who sits around in pubs drinking beer, discussing Immanual Kant and Utilitarianism and whatever moral theory is of flavor that particular day.

Dr. Lidia Schapira: What led you to write this particular story and put it in front of your medical oncology colleagues? Is it your wish to sort of let people sort of loosen up and be their authentic selves and find more joy in the clinic?

Dr. Stacey Hubay: That’s a good question! The most immediate impetus was I had an assignment for my degree, and I thought, I have to write something. But I'd been writing down these sort of snippets of things I found funny. Occasionally, I just write them down because they were interesting to me. And because we often relate stories to people, “What did you do today? What was your day like?” And because you tell these stories over and over, they develop some kind of oral, mythical quality. You're like, “Here's what I remember that was funny that happened, and it might have been many years ago now.” And I think I'd been thinking a long time about writing it down and sort of organizing it that way. And I guess having to produce something as part of this degree program was an impetus for me. But I'd always wanted to do it. And I think the main thing was I wanted to make it clear to myself what it is I like about it. It's actually made it, for me, much more clear. It was sort of a nebulous thing that I like my work and what is it like about it. And this is what I like. I like the joy I get from patient interactions. And then a secondary goal is I hope that other people, if they were to read this, they realize it's okay for us to have joy in our work as oncologists. And there is a lot of doom and gloom in the world and in our practices, but there's always, always a chink that lets the light in, there's always some humor in what we do. And so I hope that if other people can find that, too, that they enjoy their practice and they last a long time and ultimately help patients through this difficult journey.

Dr. Lidia Schapira: Are you somebody who likes to read stories? And if so, what stories have you read recently that you want to recommend to our listeners?

Dr. Stacey Hubay: Oh, I am reading The Master and Margarita because three different people recommended this novel to me over the last three years. When a third person did, I thought, “That's it. Got to read it.” It's a Russian novel from the 1930s that was banned until, I think, the ‘60s or ‘70s. It's like a satire of Russian society in the ‘30s. And actually, what I like about it, I haven't finished it. I'm a third of the way through, as I think it's one of the so-called classic novels, people tell me, but that's funny. A lot of the classic novels are kind of tragedies or romances, and this one is sort of absurd black humor in the face of a difficult situation, which I guess is related to oncology, again. So this sort of oppressive, difficult society, the 1930s and Soviet Union, how do you deal with that? With humor. So I'm quite enjoying it, actually. So I recommend that one. 

Dr. Lidia Schapira: Well, you're an amazing storyteller, and I really enjoyed our conversation. Is there any final message that you want to convey to our listeners?

Dr. Stacey Hubay: If you have a chance to become an oncologist, you should do it. It's just the best career I can imagine.

Dr. Lidia Schapira: Well, with your laughter and with that wonderful wisdom, let me say, until next time, to our listeners, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

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Guest Bio: Dr. Stacey Hubay is a Medical Oncologist at the Grand River Regional Cancer Center.

Listen to ASCO’s Journal of Clinical Oncology article, "Scotch and Pizza” by Dr. Paul Jansson, who is an Emergency and Critical Care Physician at the Brigham and Women's Hospital. The article is followed by an interview with Jansson and host Dr. Lidia Schapira. Dr Jansson share his perspective as a critical care physician and how one question can serve many purposes all at once.

TRANSCRIPT

Narrator: Scotch and Pizza, by Paul S. Jansson, MD, MS 

“Would you tell me about J?,” I asked. What was she like? I made eye contact with one of her sons, who looked back at me, somewhat puzzled. 

“You mean her illness?” he asked, quizzically. Immediately, I worried that I had lost the family,

all sitting shoulder-to-shoulder in the cloistered conference room. No, I responded, can you tell

me about J before the illness? What was she like? J came to the intensive care unit (ICU) in the early hours of the morning, only a few hours after making her way from the emergency department to the oncology ward. Admitted with a diagnosis of failure to thrive and dehydration, her CT scans made clear the extent of her cancer’s spread. Over the last few months, she had shown remarkable improvement with each serial round of palliative chemotherapy, beating the cancer back and holding it at bay, one round at a time, but it had now spread seemingly everywhere, despite medication, despite molecular testing and targeted treatment, and despite her tenacity.

Overnight, she became more and more confused, her electrolytes deranged from days of poor oral intake, now admitted to an unfamiliar environment. Her lungs, bearing the brunt of her disease, had further suffered over the week as she aspirated. As her breathing became more labored, a nasal cannula progressed to positive pressure ventilation. By early morning, she was unresponsive, and the early morning phone call to her family had led to a panicked reversal of her Do Not Resuscitate/Do Not Intubate order. And so she came to me, mechanically ventilated, blood pressure supported by an armada of vasopressors, her body failing, which brought us back to that small room.

We didn’t have the chance to get to know her before she got sick. I looked around the room, meeting their eyes. We only know her like this. What was she like before all of this?

In my first months of intern year in the ICU, I had seen this technique used in family meetings.

Initially, I adopted it as a matter of routine, copying the methods I had seen used by senior residents and attending physicians. As I came into my own as a physician, developing my own style, I began to see its value. It opened my eyes beyond the Comprehensive Flowsheet and the Results Review spreadsheet that scrolled into infinity. It showed me why I was doing what I was doing and who I was doing it for.

“She loved scotch and pizza.”

The room was silent, and we looked around. Her oldest daughter, a nurse herself by training, had broken the silence. Together, she clarified. I know it’s a weird combination, she said, but she loved scotch and pizza. It must have been something from college.

We all glanced around for a moment, making bewildered eye contact, before the entire room broke into laughter. 

“She made a mean coleslaw,” volunteered another brother. “And a great hot dog.”

“She was a fantastic mother,” reported the next.

“She was my soul.” Thus far, her husband had sat quietly in the corner, the face of stoicism. He was a retired physician, a self-described man of few words. A moment of silence as we all looked toward him, across a conference table, barren except for half-used boxes of tissues, surrounded by children on both sides. She was the best thing that could ever happen tome, he continued. Another long pause, until the words spilled forth. When I would leave her to go to work, I felt incomplete. When I returned home, I felt an immense sense of being at peace. When I was with her, I was calm. She made me whole. She was my soul. We sat in silence, the tears welling in my eyes, welling in all our eyes. She was everything that I was not. Kind. Patient. A fantastic cook. We laughed. Then, another long pause as he gathered his thoughts. And now I know what I need to do. 

In his stoicism, his silence, his love, he told us what we all needed to hear. As deeply as her loss would rend his soul, there was nothing more that I could do—that anyone could do—to bring back the woman who gave such life, and further treatment would only prolong her suffering. She died that afternoon, surrounded by her family, finally at peace. A chef for the neighborhood. A mother. A friend. A wife. A soulmate. And a lover of scotch and pizza.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I am your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Paul Jansson, an Emergency and Critical Care Physician at the Brigham and Women's Hospital and a member of the Harvard Medical School faculty in Boston. In this episode, we'll be discussing his Art of Oncology article, “Scotch and Pizza.” 

At the time of this recording, our guest has no disclosures. 

Paul, welcome to our podcast, and thank you for joining us.

Dr. Paul Jansson: Well, thank you. It's a pleasure to be here with you. 

Dr. Lidia Schapira: So first, let me ask a little bit about this essay and about your intended audience. This is a beautiful meditation, I would say, on a family meeting that takes place in the context of somebody with advanced cancer. What led you to write it? What led you to decide to share it, mostly with an oncology readership. 

Dr. Paul Jansson: This is a piece that I think wrote itself and it was something that came to me as I couldn't sleep in the hospital call room. I was on call the day after this family meeting and lying in the polyester sheets and listening to the air conditioning rumble, I couldn't sleep. And it just came to me all of a sudden that I had to write it, and I had to write it in this exact way. I was working an overnight shift in the intensive care unit, and at 5:00 a.m. sat down at the computer, and this just all poured out, basically, in the method in which it appears today. I think there were very minor grammatical changes, but it really just came out. It was a story that I feel that I needed to tell.

Dr. Lidia Schapira: So why do you think that this meeting and this family impacted you so deeply? I mean, there's a huge emotional connection here, and I introduced you as a critical care doctor, but you sound like a palliative care doctor to me here, sitting with a patient, basically just asking one question and then watching this loving scene unfold. And it struck me that it moved you. Did I get that right?

Dr. Paul Jansson: I think you're absolutely right. Brigham and Women's Hospital is the inpatient hospital for the Dana-Farber Cancer Institute in Boston. And so, by its nature, intensive care medicine at Brigham Women's is a lot of oncology care. And so you are absolutely right in that these conversations are very routine for us. But there was something about this family, the connection, that just stuck with me. I think with many of these conversations, it's relatively routine. It's certainly not routine for the families. But as an intensive care specialist, this is a relatively routine conversation. And to get this level of detail and humor and eulogizing on the part of her husband is really quite unusual and was very profound to me, sitting in that moment stuck with me.

Dr. Lidia Schapira: I was struck, Paul, by the fact that you asked one question, and immediately they're talking about her in past tense. She was. She loved. She did. Did that strike you in the moment as sort of showing that they actually knew exactly what was happening?

Dr. Paul Jansson: Yeah. I think there is a moment in these conversations where the family understands what is happening and what needs to happen. And it's, I think, best if the family gets there on their own and works really well in that goals of care setting. And I think the love that they were expressing for her and the admiration and the appreciation, that was really profound to me.

Dr. Lidia Schapira: One of the reasons why I love your piece is that it takes us from what we are now teaching as a goals of care discussion or a family meeting. And it brings us back more to the art of medicine, the joy of medicine, and the intimacy of these moments. This family was totally ready to accept you in their little circle and start to share things that were really very deep for them. Tell us a little bit about what it was like to be in the room with her husband, who's a retired physician, her daughter, who's a nurse, and the other family members who seem to be sort of helping one another to eulogize, as you said, in the most loving way, their almost gone mother and wife. 

Dr. Paul Jansson: I am not an oncologist, and I do not have the pleasure of these longitudinal relationships that many oncologists have developed over months and years and decades for some of these patient physician relationships. And so as an intensive care physician, it's a very quick and powerful bond that we are really forced to make with the families. And so I actually never talked with this woman. She was intubated on the night shift and was brought to the intensive care unit, intubated and sedated, and I never got to meet with her. I never got to sit in the office with her and discuss her hopes and her fears and her journey and all of those things that are really more the domain of the oncologist. But in our specialty, I have to really develop this relationship very quickly, where people will trust a life and death discussion with someone whom they've only known for 15 or 20 minutes in some circumstances. 

And so it really is a privilege and an honor to be granted this degree of trust and disclosure and openness about who the patient is and was in the life before I met her. And so sitting in that room, it's always very awkward to start. It's a converted conference room with some boxes in the corners, and there's only, as I wrote in the piece, a box of tissues on the table. And so very quickly, we have to go from, “Paul Jansson, I'm the intensive care doctor,” to these discussions of life and death, and how to negotiate this very fraught transition, I think is really the point that I think you're getting at in the art of medicine. And how do we go from 0 to not 0 to 60, but 0 to 100 with these really life and death decisions? And that's very difficult.

Dr. Lidia Schapira: In a flash.

Dr. Paul Jansson: Exactly. And far sooner than anyone wanted, I think, if any of these families. Everything is so sudden. I even wrote about this in the piece. She had a DNR, DNI in place, and they got the call at 03:00 a.m., 04:00 a.m. however early it was in the morning. And so you can really tell at that moment they were not expecting any of this. They were not ready for any of this. But unfortunately, we were in that circumstance.

Dr. Lidia Schapira: You know, Paul, when I hear you speak, I remember a friend of mine who is an actor and teaches doctors communication skills, and she basically says that doctors and actors have 90 seconds to develop rapport with their audience. And basically in your field or in the emergency room, this actually plays out every day. You're absolutely right, we in oncology often build these relationships, craft these relationships over time. And we probably know the names of all the people in the room and we would know what they do. But you're just kind of walking into the scene. Now that you've had a little time to reflect, do you know what it was that led them to reverse that DNR/DNI decision? Was it panic? Was it not knowing? I think as a reader, I'm struck with the fact that they had a plan, they reversed the plan, and then they quickly just came right back to what the original plan was. Maybe they hadn't expected this to happen so quickly. 

Dr. Paul Jansson: I think it's more common than we think it is, or perhaps it should be. And I think every family has a different reason for why this is. And I think for some families it's just they needed more time. And so this was for them a call that was at 04:00 a.m. and they were at home and they weren't with her. And many families just want to be there for the end. I think for some families there's a bit of denial, “Okay, sure theoretically she said do not resuscitate, do not intubate, but we're not at that point yet.” So I think for some families there's that. And for some families, it just takes more time than they're expecting. And that's not unusual in our world, as I think everyone there saw what was happening to her and what we had essentially done to her, intubating her and putting her on all the pressors and doing all these things that were somewhat against her wishes at the end of life, so we had done these things to her. And it just took a little bit more time to realize this was not what she would want and also to give them time to be there. But I think every family has a different motivation, and it's hard to say how you would react with that phone call at 02:00 a.m. It's never what you think it would be.

Dr. Lidia Schapira: Yeah, it's the old president's commercial, right? “Who do you want to take this call at 03:00 a.m. when there's an emergency?” But when it's this personal, I can understand it. I wonder if you can tell us a little bit how it struck you when the family sort of very organically again reached the conclusion and her husband articulated, “I know what I need to do.” What did that feel like for you as the critical care doctor who is quickly trying to lead this family to perhaps what you would consider the most dignified or humane, compassionate denouement for them?

Dr. Paul Jansson: I think the first feeling for me was relief and just knowing that the decision that they had made for her was the right decision. And it wasn't a decision that I needed to make and talk them into or negotiate with them. It was the decision that they knew was right. And I think the other thing that stuck with me so much was the love and humor that they displayed in this. And I think many, many families would cry and be sad, but how many families would sit there and make a joke about this strange food combination that she has from college and how she loves to cook from the neighborhood, and all of these just flashes of humanity and humor that I was not expecting from the family. And then in that moment, we went very suddenly from humor to this profound grief and appreciation and reflection on who she was as a woman and her personality and how well that complemented her husband. And it was just this emotional whirlwind where we go from bad news to laughing together to crying together, all in the span of what was probably 10 to 15 minutes. That really stuck with me. 

Dr. Lidia Schapira: Paul, humor me here. I don't often get to interview a critical care doctor, especially on a public medium like a podcast. So speak a little bit to me and through me to our listeners. What can oncologists do to have a good rapport with the critical care docs and nurses who are actually looking after their patients? Sometimes there are all of these moments of anticipated tension, and I wonder if you can just give us a little instruction.

Dr. Paul Jansson: That's a wonderful question. I think honesty and truthfulness is always incredibly important, and taking that relationship that you've built with the family over time and bringing us into that circle of trust and letting us give our perspective. And I am not the oncologist, as I said before, I do not know all of the data and all of these things that is well within your specialty, but I know that the specialty of critical care and what is and isn't achievable, and to have the oncologist team have those developed relationships and ideally some knowledge of what the patient would want and blend that with what I'm able to deliver as an intensivist. I think that the trust together and the working together for what the patient wishes and what we can actually deliver for the patient, that's really what is most meaningful in collaborating with the oncologists. 

Dr. Lidia Schapira: Yeah, I say a little prayer for that. I know that I've walked into an ICU and hoped very much that my colleagues in critical care didn't see me as an oncologist in denial, somebody who wanted to be very much a sort of present for their patient. You probably have some of those stories.

Dr. Paul Jansson: There's an interesting tension. Yeah, I think you exactly pointed that out, that there's this tendency to think that the oncologist is always going to offer yet another round of chemotherapy or some clinical trial that can be offered. And on the intensive care side of the fence, we're sitting and counting on our fingers and sometimes toes, how many organ systems are not working, and how we negotiate that hopefulness and optimism with who is in front of us and what we've been dealing with over the last hours and days and weeks. And I think the tension is probably more theoretical. Every time I talk to the oncologist, they're quite realistic. I think more than perhaps is in my mind. So I think there's more of a theoretical disconnect than there is in real life. 

Dr. Lidia Schapira: Well, I hope our professions can coexist and work collaboratively for the sake of our patients. Talk to me a little bit about how you might use this very intimate story in your teaching, since you're part of a teaching faculty.

Dr. Paul Jansson: Well, shortly after the preprint was posted, I actually received a letter by email from a faculty member at a teaching hospital affiliated with a cancer hospital, saying that he was going to start using this piece in his discussions about how to have goals of care discussions with his oncology fellows. And I think there are two different purposes of the question that I asked: “Tell me about her.” And I think they serve two distinct purposes. And the first is this humanizing and making a human connection that we talked about. It allows you to make some of that connection that you haven't had the ability to do over the last weeks and months and years. You can really see that patient as an individual person. And I think the second role that this question helps with, particularly for the intensivist, is it really helps to expectation set. And so for many people, the answer to this question will be, “Oh, well, she was running a mile a day, and she loved her pottery and she loved whatever it was that is her passion.” And for some people, the answer may be, “Well, she was having a really hard time lately, and she was spending more time in the hospital than out of the hospital.” And so that can also really help from the intensivist side of things with prognosticating and really being realistic about what we can offer at this moment. That's why I really like this question “Tell me about her,” because it really helps with everything all at once. It lets us make that human connection. It lets us gather some of the clinical information that we need, and it reminds us of why we're doing this job in the first place, and that's to take care of the patient. 

Dr. Lidia Schapira: Yeah. My very last question now is this: It occurs to me that you have a lot of these moments, and as you say, you cry, you share in the human aspect of all this. And you're right there, you have a front row seat to this grief and this loss. Do you and your colleagues have any protocol or ritual to help one another and support one another and at least acknowledge the emotional load of your work? 

Dr. Paul Jansson: That's an excellent question. I think from the intensivist side of things, when we have the conversation this way, it's actually a blessing to us. I think there's a lot of moral injury, particularly in critical care, and doing things to the patient that I alluded to before, that the patient wouldn't necessarily want, or unnecessarily prolonging life at the risk of suffering. And I think when patients and families realize that this is not what their loved one would want, I think for many of us, this is a relief, and it's a blessing and an honor to take care of patients at the end of life. When it goes like this, we're actually very happy. It's really a pleasure more than a cross to bear.

Dr. Lidia Schapira: Yeah. Thank you so much for sharing your thoughts, your humor, your humanism, your incredible common sense, and I'm so glad that the piece just poured out and that you chose to put it in front of an oncology readership. So from our listeners, thank you so much.  

And for those of you who are listening, thank you for listening to JCO's Cancer Stories, the Art of Oncology. Until next time, when we'll find you again. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

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Guest Bio:

Dr. Paul Jansson is an Emergency and Critical Care Physician at the Brigham and Women's Hospital and a member of the Harvard Medical School faculty in Boston.

Listen to ASCO’s Journal of Clinical Oncology essay, “The Heritability of Cancer” by Dr. Leeat Granek, Associate Professor at York University in Toronto, Canada. The essay is followed by an interview with Granek and host Dr. Lidia Schapira. Granek shares how her mother's diagnose with breast cancer continues to shape her own life and experiences.

TRANSCRIPT

Narrator: The Heritability of Cancer, by Leeat Granek 

I was 9 years old when my mother was first diagnosed with breast cancer and 25 when she died. The boundary between before and after is so clear that it feels like I have lived two lives. I went from being a careless, cerebral, quirky child to a rough version of the responsible, reliable, and vigilant adult I would eventually became. With cancer came the fear of losing my mother, and with that fear came an unwelcome but necessary maturity. There were other important life events impacting our family around that time that contributed to this sense of split. We had just moved from Israel to Toronto and knew few people in our new environment. My mother had just given birth to my baby brother, and my parents had bought a new house for our growing family. At the time, I was starting third grade in a new school—the fifth new school since beginning kindergarten. All this in addition to the diagnosis. My mother was only 33 years old—the same age I am now.

While I adapted to everything else—new house, new school, new brother, new country—cancer insisted on sticking around, and it claimed not only my mother's life but, in many ways, my own. Cancer enters the body of the caregivers in ways that move far beyond the domestic work involved in the running of the house or the management of medications and appointments. It can become part of caregiver DNA through inherited genes, but it often does so in more insidious ways.

My mother lived with the disease for 17 years before she died in 2005. It is fair to say I grew up in the hospital. Over the years, there were multiple surgeries, along with episodes of weekly chemotherapy and daily radiation sessions. She suffered a host of complications that came with metastatic disease and its treatment, including four instances of strep A bacteremia. Many major events happened in the hospital. We ate Chinese food with our matzos on Passover in her room and lit Hanukkah candles in the waiting room where we accidentally set off the fire alarm on the seventh night, to the consternation of the nursing staff. My 11th, 15th, 18th, and 25th birthdays were celebrated in cramped hospital quarters, cutting the birthday cake with a dull plastic knife. Indeed, the last birthday we had together was my 25th, and we marked it in the hospital 2 days before she died. In her last lucid moment, she managed to miraculously lift out of the fog caused by brain metastases to give me a kiss and exclaim “Mazal tov, Leeatie!”

I remember the sounds and the smells. Static codes being called out over the hospital loudspeakers. The haunting “clink, clink, clink” of the staples being removed from my mother's skin graft and landing with a loud clatter in a silver bowl. The pale green hallways and their antiseptic smell, which I grew to hate. The airless temperature that was neither hot nor cold—hospital weather, I used to call it. The hospital, with its sounds and smells, was my second home.

It sounds awful. And it was a lot of the time, but there were many good moments as well. My mother was smart, intuitive, funny, and astonishingly optimistic. She was always laughing and incredibly giving with her love and affection. We were exceptionally close. Her eyes lit up and her arms stretched out to give me a hug every single time I walked into her room. She would say things like, “Leeatie, I love you so much. I wouldn't change a single thing about you! How did I get to be so lucky to have a daughter like you?” and “There's no one in the world I would rather spend time with than you.” I didn't have to do anything to earn her affection. I felt that I always came first, that I was always wanted and loved, and that my mother was always entirely there for me in every sense of the word.

The hospital days that punctuated much of my childhood, adolescence, and young adulthood were both an annoyance and a blessing. There was nothing else to do but simply be together, which was fun and easy, thankfully. When I was older and no longer living at home, I would sometimes sleep over in her hospital room during her admissions. We would curl up in the twin bed and talk for hours until we both fell asleep, or we would sit together, each absorbed in her own book, comforted by the warmness of being together. 

When I think about being a caregiver for my mom, and by extension a caregiver for our family, it was not the hours of care work—the babysitting, driving to appointments, spending time in the hospital—that consumed me. The impact was long-lasting and continues to this day. As a health psychologist and a researcher in the area of psychooncology, I know the permanent and long-term devastations cancer causes throughout the caregiver's—in my case, the daughter's—entire life span. To this day, I have no real sense of what normal physical development for a woman should feel and look like, and in some sense, I never will. I entered puberty around the same time my mother was having her breasts and ovaries removed, which made that phase frightening and emotionally difficult. And now, I have no mother to turn to and ask about my endlessly evolving female form, no mother to guide me through future pregnancies or talk me through gray hair and menopause. 

Cancer shaped my young adulthood and my emotional development. At 20 years old, I was dealing with issues facing 60-year-olds who care for ill and aging parents. Because part of me recognized that time was running out—indeed, because I lived almost my entire life with a neon awareness of my mother's mortality—I was tethered to home and making decisions about school, life, and love that would keep me close to her. I don't regret these choices or a single moment that I chose to spend with her, and now I have an entire lifetime to come and go as I please. Being challenged with a cancer-driven perspective at 20, however, carries risks of having an entire lifetime being developmentally out of step with one's peers and unprepared for life events outside a hospital. For example, at 25, I could look death in the face without trembling and without abandoning my mother at her end, but I was unprepared to face the dating world that most young adults would have no trouble navigating. Although I was and remain a loved, nurtured, and supported daughter, cancer diverted the vast majority of the temporal, emotional, financial, and physical resources in our family toward fighting the disease. When she was alive, my mother was fully present in my life. But even her unconditional love could not repair the reality of my out-of-sync development as a child and young adult or today make up for her continued absence in my life.

My absent mother is at the core of a black hole of grief that remains inside of me and that has been painfully pried open with subsequent losses to cancer—my grandmother and my aunt, a professor I admired and family friend that I loved. Each loss re-exposes a haunting grief I have learned to accept and live with. Grief is a shadow that looms large in my life. It is both the topic I chose to study and the affect I advocate fiercely for,1–4 because as I have learned through my own experiences and research, love and light come from the same place as grief and darkness. 

The ability to grieve our losses fully also allows us to love and appreciate the people in our lives when they are still with us.

And then, of course, there is the worry: the biannual check-ups, magnetic resonance imaging scans, and mammograms; the surveillance and the false positives and the constant paradoxical tension that comes with the awareness of the nature of these tests provide a false sense of control over a disease that refuses to be harnessed. 

The literature about the impact of parental cancer on children at the time of diagnosis, during treatment, after surgery, and even at the time of death is extensive,5–6 but few of these studies acknowledge how much this disease alters the life course of the child well after the parent has recovered or has died. Being a caregiver for a patient with cancer consumed much of my childhood, adolescence, and young adulthood when my mother was alive and charted the course for my future as a health psychologist working in the field of psychooncology. Although many years have passed and although I have a doctorate in hand, several years of postdoctoral training in the field of psychooncology, an academic career studying these issues, and dozens of publications from my research on the psychological and emotional effects of cancer on patients, caregivers, and their families,7–16 from time to time, I still feel like a scared 9-year-old child trying to gain control over this disease and get out of the shadow that cancer has cast on my life.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. Today we are joined by Dr. Leeat Granek, Associate Professor at York University in Toronto, Canada, in the School of Social Policy and Health Management. In this episode, we will be talking about her Art of Oncology article, "The Heritability of Cancer." At the time of this recording, our guest has no disclosures. Leeat, welcome to our podcast and thank you for joining us.

Dr. Leeat Granek: Thank you so much for having me. It's a pleasure. 

Dr. Lidia Schapira: Your essay is a classic, and I'm so glad that we were able to include it in the recent anthology of Art of Oncology. So let's start by talking a little bit about what led you to not only write, but decide to share this essay eight years after your mother passed of breast cancer. Bring us to that moment. Tell us what you were thinking. 

Dr. Leeat Granek: Yeah, so that's a great question. And I recently, in preparation for this interview, reread it, and I was a little taken aback, even by how exposed and how vulnerable it was. But I really like that essay, and I'm really glad that it was published. It was kind of a culmination of a lot of thoughts that I was having as a person who has researched grief for many years, and as a person who was working in the field of psycho oncology, doing research in the area, and as a grieving daughter. And I think eight years is nothing in the grieving trajectory, right? We often think about grief as something acute that happens to you, and then you get over it and you move on with your life, and that certainly has not been my experience of grieving. I think it changes as you change, and it's just a constant presence in your life.

And I was thinking about that in the context of being a caregiver for somebody who has cancer. So I think my experience is a little different than others, just because my mom was very young. She was 33 when she was diagnosed, and I was only nine. And she lived with this metastatic disease for nearly 20 years. So we had a very long journey with cancer. And I can kind of see now, as I reread it, the parallel thinking processes I had about grief and about cancer. And being a researcher in the field, I still feel that there are a lot of gaps in terms of the caregiver experience. But this idea of heritability, we often think about cancer as something you inherit genetically through our genetic makeup. But I think that it really, especially when you're young, changes your whole life trajectory. And I could not find anything in the literature that spoke about it in that very longitudinal kind of way and the way the impact of cancer changes you throughout your entire life. And so it just came from a very personal place, but also that intersection of being aware of the different literatures and how they came together. 

Dr. Lidia Schapira: Let's unpack this a little bit. One of the things that you just said was that you shared your vulnerabilities, and I want to ask you a little bit more about that. Here you are. You're about the same age that when your mother was living with this as a young woman. I think you said that she was diagnosed roughly at the time that you were writing this. And you decide to explore this wearing a little bit of your research hat in a very deeply personal way. But then the question I wanted to ask you is your decision to share this with the community of oncologists, the people you knew very well because they had looked after your mother for all those years. Tell me a little bit about that. How did you make the decision not only to write it, but to share it?

Dr. Leeat Granek: That's a great question. This also pertains to the research that I do, because a lot of the research I was doing at the time, as a result of my experiences with cancer teams as a child, looked at the emotional impact of being an oncologist. I did a series of studies looking at the way oncologists grieve and how they feel when patients die, some of the emotional burdens of the work. And they were very vulnerable in sharing their experiences. And so I thought, well, they're telling me about their experiences, I can also tell them about mine. And I think that there's kind of a mythology around oncologists. I'm doing studies now on surgeons as well, and I think there's the same mythology around surgeons is that they don't feel or everything is compartmentalized and everything's separate. 

But from my research, I knew that that wasn't the case. And I felt that, although oncologists and oncology teams and nurses as well, witness patient suffering and family suffering, that there was nothing in the literature that kind of brought it home in this very visceral way. I don't think it would have been a surprise for any oncologist reading it, because when you follow families or when you follow parents, you see the children coming in. And so there was something about this intersection of their vulnerability and my vulnerability, enriching the experience of what it means to be a patient, and what does it mean to be a healthcare provider, which is not something that's often discussed in medicine at all.

Dr. Lidia Schapira: So to your point, I think that telling the story was a beautiful sort of vehicle for opening up the topic. You were doing it through your research. But telling a story can often start a conversation in a very different way. That's what we try to do also in selecting these essays for Art of Oncology, to bring a story that's deeply personal, that reflects one's lived experience, but opens up a topic that is otherwise perhaps not talked about as much as we think it should. So let me go back and ask, what was the impact of telling the story on your research? 

Dr. Leeat Granek: I just want to add something about what you just said about stories. The very first paper that I published on oncologist experiences of grief, I wrote an op-ed for the New York Times about that research. And it was very story-based. It was very much telling a story, and I was telling my own story as well as a story about the research. And the response to that op-ed was so profound and so much more powerful than any paper I had ever published. I got thousands of emails from people around the world, oncologists and healthcare providers around the world, just saying how touched and how moved they were by that op-ed. And that is the power of the story that you're talking about right now, that we're vying for these peer-reviewed articles all the time. But actually, the impact of just telling a story is so much more meaningful and visceral for the reader than just outlining the research findings.

Dr. Lidia Schapira: And it sounds like just receiving all of those emails after your op-ed was probably very validating. We can get rejected when we apply for grants, but people were telling you what you’re onto is really significant.  

Dr. Leeat Granek: Yeah. And I think that validating in the sense that what I felt was that as you, exactly the words you just used, that it was a conversation that was not being had to the detriment of all. And so it validated that feeling of, yeah, this is something that's really important for us to be talking about in oncology. And just in terms of the response to "The Heritability of Cancer," it was a long time ago. This is 2014, so 10 years ago. I don't remember entirely what are the specific things that people said, but I do remember getting a lot of emails about it, mostly from healthcare providers, so less from caregivers or patients who may not have subscriptions to JCO, but maybe through the podcast now will have more access. Just saying this really shed some light as to the experience of what does it mean for the extended family that I think is not often considered. Certainly, we don't think about kids very often when a parent is going through cancer.

Dr. Lidia Schapira: If you were to write this today, what would you do differently?

Dr. Leeat Granek: I think what's changed for me– I don’t think I would do anything differently, but what I think has changed is that I've had a child since I written that. Having a seven-year-old and thinking about what it's like to be going through a cancer diagnosis or cancer treatment while you have children. That piece was very centered on me and my experiences, and now I have even another layer of empathy and compassion for my mom, who had a newborn at the time. And I can just not imagine anything more– it’s going to make me cry just even now just by thinking about it - it’s just scary to have such a life-threatening diagnosis when you’re a parent. Just like grief, like I said earlier, being a victim of cancer or being part of your family, that impact is lifelong and it changes as your development changes. Now as a parent, my grief is different than it was before I became a parent. And now as a parent, my understanding of what my mother was going through is changed. That terror and fear is so overwhelming.

Dr. Lidia Schapira: So, Leeat, I can't help myself, but I need to ask you some practical questions. You're a psycho-oncologist, an expert in grief, and you've talked to and interviewed hundreds of oncologists who have shared stories, you're now a parent, you’ve lived through it. What it makes me think is that when we think about grief counseling or support for grieving children or bereaved spouses or parents, you think about it as an acute intervention and what you’re suggesting is this needs to be explored throughout the life cycle. What are your thoughts about that and what should we be thinking about?

Dr. Leeat Granek: I've written a lot about this in my grief work. The evidence for psychological counseling for grief is not strong actually when we look at the literature. For acute grief experiences in the immediate aftermath, sometimes it’s helpful having someone to talk to. But in actuality, the most helpful is having a community in which grief is an open, accepted, acknowledged, part of living life. And that does not change after the first month or the first six months or the year, five years or ten years.  

Other people may have moved on very quickly, but you’re left with the impact of that loss. And I think the impact of that loss is not only after, when the person has died, it’s also that progressive loss of function. The kind of witnessing of your loved one deteriorating. It’s not just meals that you need, you also need that emotional support. And that emotional support doesn’t necessarily have to take the form of, “Tell me about your grieving right now.” Sometimes it’s just being with. And I think that certainly in North America, we're not very good at integrating grief, loss, pain, suffering, and negative emotions into our day to day lives. So partly, 10 years, 20 years, or 25 years later, it’s hard for people to remember that loss. 

So I think the person is grieving that many years after may have to reach out and ask for the support. But I think it’s done really well in certain religions. I am Jewish and in the Jewish background, you have so many layers of mourning that’s lifelong. So you have the acute grieving experience where it’s seven days or 30 days or one year. And then every year progressively after that four times a year, you say a blessing and remembrance and give charity in the name of the dead. And for religious people, I’m not religious, this idea of every single day for that first year having to go synagogue and having to have at least nine other people that could be there with you to say the prayer for the dead, whether you believe or not believe, whether you’re religious or not, I think the brilliance in those kinds of rituals is that it simply brings you together with other people who see you everyday. 

And decades later, still that four times a year that you’re meeting with people and you’re saying a prayer, or that yearly yahrzeit, that memorial allows people a very very defined space in which to support the mourner. And I think other religions have it too.   

Dr. Lidia Schapira: Those are beautiful thoughts, and I think it speaks to connection and community as a way of supporting rather than pathologizing the grief and thinking what one needs is some sort of a professional intervention. I can’t help but add that as a community of caring oncologists, we are constantly grieving. We are immersed in grief, and in part, there is no label for how we feel. There is a small literature that you probably know far better than I do on disenfranchised grief, which is the idea that we can't quite claim to grieve because we weren't a relative or best friend, but we deeply cared and we lost and we grieve. So I find that this conversation is so helpful because I think what we’re doing is we’re talking about what we ought to be talking about more: perhaps acknowledging more from a point of view, as you say, of a parent, researcher, caregiver, medical or healthcare professional who’s involved. We are living in a society where perhaps we are afraid to think that grief is a part of our life, and we can be happy even if we grieve.

Dr. Leeat Granek: Yeah. 

Dr. Lidia Schapira: Happiness is not just the absence of sadness, I think, I don’t know. You are the psycho-oncologist, tell me if I’m wrong.

Dr. Leeat Granek: I so appreciate what you’re saying and it makes me sad to hear that grief is still so stigmatized among oncologists. I think what my research has found and all my conversations with people over the decades now is, of course, oncologists feel a lot of things. Not just grief but pain and suffering, distress at seeing their patients and their families suffering and declining. Why wouldn't they? They are human beings. So I think this idea that people don’t feel or don’t have space to feel is part of what leads to burn out actually. I think there’s a kind of fear that grief and the pain and suffering is the burn out but it’s not. In fact, what’s the burn out is the inability to talk about or to have a space to discuss it.

And I also think that the thing that gives meaning to the work is that relationship with patients.  And by the way, I’m finding that with the surgeons as well. The surgeons are even more kind of disconnected in terms of emotions. We kind of assume that they feel nothing, that they are so disconnected. By the way, I just have to say, the surgeons say, “I can’t believe the oncologists does that job.” They find it really hard to believe that oncologists can do that, that they can never do that job. And the oncologists say that about the surgeons, too. So I think it’s very interesting how different medical groups look at each other. 

But there’s this kind of sense that’s very unique about the grieving experience of how care providers is and they feel a lot of guilt and a lot of self doubt, and self criticism when patients die even though they know consciously that there’s nothing that they could’ve done and that is just the disease that is taking over. That lack of control and that sense of having failed the patient is so strong. That is a very unique grieving experience for providers who feel responsible for the care of their patients. The fact that there is no training or no education or no space to talk about that is just appalling to me as a psychologist. Because I just think you learn how to do everything else. There’s so much training on communicating bad news, on dealing with patient anger, on dealing with patient emotions and how to respond. But nothing on how to deal with your own emotions in response to this. For years, it’s just about communications training. 

One of the things we find in the literature is that even when you provide communication training to oncologists that have to discuss end of life, often those skills are not sufficient to be able to have that conversation. And what’s missing is the notion that I found in my own research that they don’t have this conversation because they feel so uncomfortable with it themselves. And so until they have some self reflective practice for healthcare providers, all the skills training in the world is not going to help because it’s about your own emotional resistance. 

Dr. Lidia Schapira: Well, this has been a phenomenal conversation, and I hope people will look at some of the beautiful research you've done in this field. Thank you so much for having shared your own experience, for the work you do, and for participating in today's podcast. 

Dr. Leeat Granek: Thank you so much. I really enjoyed it.

Dr. Lidia Schapira: So until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

The purpose of this podcast is to educate and inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experiences, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review. 

New York Times Op-Ed: When Doctors Give

Two Decades of Art of Oncology

Guest Bio: 

Dr. Leeat Granek is an Associate Professor at York University in Toronto, Canada, in the School of Social Policy and Health Management.

Listen to ASCO’s Journal of Clinical Oncology essay, “Pet Therapy: How the Cat I Never Wanted Saved My Life” by Dr. Fumiko Chino, Radiation Oncologist at Memorial Sloan Kettering Cancer Center.. The essay is followed by an interview with Chino and host Dr. Lidia Schapira. Chino describes how she became an unlikely cat owner and how her "pet therapy" allowed her to move forward with life as a widow.

TRANSCRIPT

Narrator: Pet Therapy: How the Cat I Never Wanted Saved My Life, by Fumiko Chino 

My husband and I adopted our cat, Franklin, on a cold November day. It was one of the last days that Andrew felt well enough to leave the house to go anywhere other than to chemotherapy or a doctor’s appointment. Our news at these appointments had shifted toward the negative, with disease progression on scans, low blood counts, and fluid accumulating in places it shouldn’t be. After a year of aggressive treatment, his body was tiring out, and treatment options were becoming limited. Andrew had always wanted a cat, but I was resistant; I knew that I would be taking care of both of them and wasn’t sure that I was ready. At a certain point, though, if your dying husband wants a cat … you get a cat, right?

Franklin was a rescue—a scrappy orange boy with stripy legs and a spotted belly. He played with my husband’s oxygen tubing, batting the plastic back and forth. He adapted quickly and would sit in Andrew’s lap in a warm furry ball, signaling his comfort with loud, full-throated purrs. He would play fetch with my husband, who often wasn’t strong enough to leave the bed. There was a large bowl of wrapped candy in the living room, and Franklin would bring one to the bed. Andrew would throw it from his propped-up perch in the bed; if the angle was perfect, he could fling it from the bedroom, through the slight zig-zag of the hallway, and into the large open living room. Franklin would race off to chase the candy and then trot back to deposit it one more time in Andrew’s lap. They could do this for hours, it seemed, until one of them tired and then they would nap. They both napped a lot.

After Andrew died in March, it was hard to keep a schedule. Days and nights would drift into each other; it was the gray days of late winter before spring showed any promise of life. Franklin was my constant companion and followed me around the house, sitting in the living room to watch a movie or on a kitchen chair to stare at my meals, even into the bathroom. He slept at the foot of the bed and woke me up in the morning to feed him; he made it hard to sleep in all day and forced me to keep at least a semiregular schedule. I walked everywhere, trying to make simple tasks last all day; walking to get Franklin’s food from the pet store was a triumph of activity. We did, of course, take a lot of naps; sleep was an easy escape from my purposeless existence. He would fit his furry warmth in the crook of my knees or sprawl across my lap, mitigating the cold emptiness of a lonely day. He was a living presence when all I could see around me was death.

Grieving is no simple process but, with time, I was able to return to some semblance of a normal life. I found focus in singular steps: researching school options, studying for the MCAT, interviewing for and ultimately entering medical school. One step at time (one application, one class, one shelf) is how I progressed from grieving widow to oncologist. Franklin would sit on the kitchen table where I worked, putting his paw occasionally on my papers or resting his chin on the warm edge of my laptop. He kept me company through grueling hours of studying and welcomed me home from the hospital at all hours of the night, greeting me with a small noise halfway between a squeak and a meow. Franklin was a welcome constant as I reinvented myself as a physician, a comforting touchstone as I shed my former life as an artist and wife and gained new footing as a clinician and researcher.

I am now in my first year as an attending physician in a world-leading cancer center; Franklin has moved with me to a glorious, light-filled apartment in New York City. Looking back over the decade since Andrew died, I know that Franklin was the last gift that he gave me. I was so depressed and lonely; I don’t think I could have survived that first dark winter without his presence, much less made it through medical school and residency. That’s the thing about pets; you care for them, but they also care for you. Franklin provided that extra layer of support that allowed a desperate present to turn into a hopeful future. When I meet with patients and families struggling through treatment now, I try to highlight these simple support goals: physical company, a routine, love and warmth. We talk about who is available to help and what comfort they can provide. And for those struggling alone, I sometimes recommend they consider a trip to the animal rescue. I tell them, they may find that they get rescued too. I know I did.

I moved out of that first house a couple of months after Andrew died. It was too big for just a lady and her cat. When I pushed our bed out from against the wall, I discovered a small pile of candy that had slipped behind his pillow down the back side of the bed. After he was gone, Franklin had continued to bring candy to my husband’s side of the bed and it had been piling up. I sat down on the floor of our big, empty house and cried big, ugly tears while staring at that stale candy. Then, like a gift, Franklin came over and sat in my lap, a small, warm presence, purring.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm an Associate Editor for Art of Oncology for JCO and a Professor of Medicine at Stanford University. 

Today we are joined by Dr. Fumiko Chino, a Radiation Oncologist at Memorial Sloan Kettering Cancer Center. In this episode, we will be discussing her Art of Oncology article, "Pet Therapy: How the Cat I Never Wanted Saved My Life." 

At the time of this recording, our guest has no disclosures. 

Fumiko, welcome to our podcast, and thank you for joining us.

Dr. Fumiko Chino: Thank you so much for having me. I'm happy to be here to talk about my pet Franklin, but also to talk about how our animals care for us just as much as we care for them.

Dr. Lidia Schapira: That's a beautiful thought. Let me first start by just expressing my sincere condolence over the loss of your husband. We have met so many times at medical meetings and have had a chance to talk about work, but this is really personal, so I just wanted to start our conversation by acknowledging that very important part.

Dr. Fumiko Chino: Thank you. I think a lot of us are drawn to the field of oncology for one reason or another. Sometimes we're anchored by the experiences of our friends or our family members, or that one patient that you couldn't get out of your head in medical school. Mine, obviously, I think, started a little earlier than most with my husband's death, and it kind of drew me kicking and screaming into medicine and then into oncology. But against my sort of better angels, I ended up in oncology. The roots of this tree are strong, basically.

Dr. Lidia Schapira: So let's talk a little bit about that and the experience of being a care partner, a caregiver, a caretaker. As a very young woman, I think you were an artist at the time, not in medical school. Can you bear to share with us a little bit about that part of your life, those years or months?

Dr. Fumiko Chino: Sure. So I always say that caregivers are kind of the unpaid glue that keeps the US healthcare system together, functioning, working. And the caregiver experience and the burdens that caregivers have are sort of just barely being explored now within research. And I can certainly tell from my own personal experience that being a young caregiver was very challenging. My husband and I were both in our 20s. We were trying to establish our careers. We had a significant battle about his health insurance, which is a very common problem for young people. And even after he died from cancer, I actually was uninsured because I was on his health insurance. So it's hilarious for me now as a researcher who does research on access and equity and insurance that I myself was uninsured for, I think, about two years, actually. 

But those burdens of caregiving, they're sort of physical exhaustion, they're mental exhaustion, but they're also emotional exhaustion. And it's sort of all of the above, all hands on deck when someone you love is sick. And I think it's part of when I shift into research mode or patient centered care mode, I always try to think about the complete picture for the person in front of me, which is also their spouse, their parent, their sister, sometimes their friend, who are also, I think, part of the journey of cancer, but often sort of unacknowledged.

Dr. Lidia Schapira: Let's talk a little bit about that, the sort of the emotional side of caregiving. Yes, you talk about burdens and exhaustions, but what I read in your essay is also about the love and connection that you experienced during your husband's illness with him. And then this third party, the story is this adorable cat. Can you talk a little bit about that? All of the positive side, not the burdens of caretaking and caregiving, but the love and connection.

Dr. Fumiko Chino: It's sort of shocking when you go through something critical together, how much that bonds you, how much it deepens your connection and your capacity for communicating effectively and making hard decisions. I always say my husband and I were only married for a year, essentially before he died. But it's like dog years. One year of cancer is sort of like seven normal people years. And so we had so much love and humor and insider jokes going through the experience. It's certainly never recommended for anyone. But I will say that it made me realize how much I did love my husband, how deeply connected we were. 

And then this introduction of a small, fuzzy animal was something that I never realized that would make a difference for me personally, but that would carry me forward through my husband's illness and his death and kind of help me become the full me that I didn't even know I was supposed to be at the time we adopted Franklin. And then again, the love that we had together, our little tiny family unit, a cancer patient, a cancer caregiver, and a rescue cat. We were quite a cohort for as long as we lasted.

Dr. Lidia Schapira: And the other incredible theme that emerges from your essay is the grief and the deep, deep grief that you experienced. How long did it take and how did you manage to climb out of that?

Dr. Fumiko Chino: I mean, I'm still grieving, right? So that's the thing about grief, is that it changed shape and color, but it never really goes away. There's this phrase, time heals all wounds, and that's certainly not true. I think that the wound is different. It's not quite as raw, but I'm still grieving. But in terms of pulling myself out of the deep depression that I was in, it was years. I'll be honest. I was sort of groundless. I had no purpose. I feel this sometimes as an oncologist too, which is we feel that when our patient dies that we failed. I only had one job. It was to keep my husband alive, and I didn't do it. And so it took a long time to kind of rebuild myself and my personality when I had quit my job to take care of him. So it really was my only purpose. And then when that went away, it took a long time. 

It's interesting to be on the other side of it now and to sort of think about, well, what are the lessons I can take away from that? To try to practice for myself truly patient centered care and to think  about everything that our patients and their caregivers really need to continue on because it's not an easy thing.

Dr. Lidia Schapira: Let me just say this and that is that it is absolutely amazing that you have constructed sort of a professional persona from this experience, but it's also your experience and your story. And what I'm so deeply moved by and a little curious about is you're taking it to a story and bringing the narrative side to your professional community. It's not as if you wrote a story or journaled about this and shared it with your friends and family. You actually made yourself vulnerable in a way. And I just want to pick up on that a little bit more because clearly from where I sit, this makes a huge contribution to the discourse in oncology as well, to acknowledge the personal side, the emotional side, and make it a story. And so with that, I just wanted to ask you this. How long did it take or what was the process for this series of experiences that are so intense and emotional to become a story and something you could write?

Dr. Fumiko Chino: That is such a good question. I will be honest to say that I didn't tell any stories at all about my husband having cancer until long after I decided to become an oncologist. And it was only when I was doing the research that I was doing in financial toxicity where I realized that story could make the message of the research more powerful. I knew always why I was doing the research. But having that deeply rooted, personal, let's be honest, terrible story, it could make it more meaningful, it could make it more understandable for people who hadn't personally experienced it. And so I think, similarly, realizing that the larger story of love and loss and of caregiving but also of how these funny things like pets that can make a difference for individuals and families, to develop that into a story that you could tell, again, a decade, to think about how that could turn around essentially into something that is not just a feeling, but is words and paragraphs. 

Dr. Lidia Schapira: Yes. And it was obvious to me when I first read it, the beauty of the position that I have as an editor is that I'm the first reader, is that I felt that I felt the enormous amount of years that went into processing these feelings and then how skillfully you introduce the humor and through the character of the cat. And the cat going to fetch the candy wrappers and bringing them back. I mean, it's beautiful. One of the things Fumiko that I've so admired also about your work is your advocacy, your advocacy for trainees, your advocacy for inclusion and diversity, and your advocacy for pets. Tell us a little bit about how those strong commitments you have to bring people up and to sort of change things for the better are also deeply rooted in your lived experience.

Dr. Fumiko Chino: I have in my life been incredibly privileged. I know this deeply. And I know that even the turning of round of my life from being a grieving cancer widow into being a physician today is deeply rooted in my privilege, from being from a medical family, from being from an educated family, from being from a family where everyone was expected to go to college and succeed in one way or the other. And so realizing that not everyone has that privilege of being able to overcome these obstacles because it's just a pile on. I think sometimes being able to provide that sponsorship and mentorship for other people has been just a strong pillar of my personal mandate for the physician that I wanted to be, for the researcher that I wanted to be. It's rooted from the fact that there's been some bad things that happened in my life, obviously, but my capacity for moving forward and reinventing myself is deeply rooted in my own privilege.

Dr. Lidia Schapira: To bring this short conversation to a close, I wonder if you can reflect a little bit on the role of art. I mean, every time I just see you, I think of art. There's a sort of an artistic aura about you, just the way you accessorize yourself and how you present yourself and all of the images that you choose to post. It's a very deliberate image. So tell us a little bit about both visual art but also stories and how you feel in your role as an academic oncologist they can humanize our culture, they can inspire, they can help, they can even inform research questions. I'd love to hear your thoughts about that.

Dr. Fumiko Chino: Whenever I was in high school, I had these two great loves, and they were science and they were art. And unfortunately, I think I grew up in an era where you really did have to go one way or the other. And so for me, I chose art. And so I had a Bachelor's of Fine Arts. I was immersed deeply in the art world as a young adult and as a growing faculty. It was only cancer that kind of brought me into the science again. But having been immersed in art for so long, when I transitioned over to the more medical school residency, now as an attending, I never wanted to leave the art behind because it so deeply informs how we view the world. And I think that perspective, that shift that comes with looking at a new piece of art, it makes us all stronger observers and, I think, stronger communicators. 

And we all approach art very differently. The example I'll give is that my husband was really into jazz, and I hate free jazz. It just drives me insane. Because for me, my question always is for a piece of art - so in this case, free jazz - what are they trying to communicate to me? And he said, “Well, that's not how I take it. I say, how would it feel to make this music? It's the actual mechanics of making the music and absorbing the music.” And that's how he interpreted that form of art. And I was just always like, “Oh, but I don't get what are they trying to tell me?” And I think that is also just incredibly amazing, that art communicates different things to different people. And it reminds me to take a break and to say, you know what, I feel so steadfast in my opinion that this is the right way of doing something and it could be that someone is going to take it in a totally different direction.

Dr. Lidia Schapira: Let's end on a note on Franklin. Is Franklin still with you?

Dr. Fumiko Chino: So I was happy to be recording this podcast now. So Franklin died last month. 

Dr. Lidia Schapira: I'm so sorry. He died in my home with a home hospice vet. And it was really beautiful. It was exactly what I would want for myself if and when I go, to be surrounded by love and comfort. He was with me for 17 years. Obviously, got me through a lot. And it was a message to me how we could be doing better for our patients as well. He did have cancer, and he had cancer that was rapidly growing. And so that way of putting a bookend in our experiences with cancer, I feel like it was the last message that he gave me that that's the gift I could give to him.

Dr. Lidia Schapira: Well, take care of yourself, please. Again, my condolences on losing Franklin. Thank you for your openness and for your willingness to share. So we are so fortunate to have you in our ranks. I'm very glad that you're doing what you're doing.

Dr. Fumiko Chino: I appreciate the time to talk to you again. This message about a silly cat and his human, I think, certainly it's my story, but I know that many of our patients also have this deep connection with their animals and it really does carry them through some very dark nights. 

Dr. Lidia Schapira: So until next time and thank you for joining me today in this very moving interview. Thank you for listening to JCO's Cancer Stories: The Art of Oncology, and for our listeners, don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO Shows at asco.org/podcast. Until next time.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. 

Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review. 

Guest Bio: 

Dr. Fumiko Chino is a Radiation Oncologist at Memorial Sloan Kettering Cancer Center.

Listen to ASCO’s Journal of Clinical Oncology essay, “Gosses and the Dalmatian Puppy” by Dr. Zvi Symon, Senior Consultant at the Sheba Medical Center in Israel. The essay is followed by an interview with Symon and host Dr. Lidia Schapira. Symon reflects on an ancient Jewish tradition while seeking to palliate a dying patient.

TRANSCRIPT

Narrator: Gosses and the Dalmatian Puppy, by Zvi Symon, MD 

A few months ago, I was paged to see a newly diagnosed patient in the hospital with a malignant trachea-esophageal fistula to consider palliative radiotherapy. Despite the 60-minute delay that had already accumulated in my clinic, I hurried past the folks in my waiting room as they scowled their dismay, and promised to return quickly.

 My new consult was a 70-year-old man who had lost 30 kg over the past few months. He was a heavy smoker with chronic bronchitis and a squamous cell carcinoma of the upper esophagus gnawing into the cartilage of the upper airway. The surgeons ruled out any hope for surgical remediation. The gastroenterologist attempted to insert a stent but could not get past the tumor’s stricture, so radiation therapy became the last option.

On the edge of the bed near the hospital room’s window sat Vladimir, a ghost of a man, coughing intermittently with a constant drool of saliva dripping into a stainless steel bowl that he held in his lap. I introduced myself, but he hardly acknowledged my presence, consumed by his own discomfort. I turned to his pleasant, gray-haired wife sitting in the blue armchair next to his bed. Before proceeding, I asked her what he knew about his condition, and she referred the question to him in Russian. Vladimir closed his eyes, sighed heavily and said softly: “I don’t feel well and… cannot eat.” His wife watched me as a sad smile played on her lips, and she struggled not to cry. I paused for a moment, remembering my full outpatient waiting room, but wanting to give his story justice. I turned to Vladimir’s wife.

“Tell me a bit about Vladimir, what did he do before he became ill?” I drew up a chair and sat closer and she sighed. “He worked as a builder. When the family emigrated to live here in Israel, his mother died soon after. He became deeply depressed and took to the bottle, spending most of the day sitting on the porch, drinking vodka, and chain smoking. A few years ago, I bought him a cute clumsy

Dalmatian puppy who adored him, romping around happily, licking his hands, and jumping all over him. He developed a special relationship with the dog, stopped drinking and took the dog each day for a long walk—well, perhaps the dog took him for a walk.” A smile flickered across her face briefly. “Unfortunately, the dog died a few months ago and he sank back into a depression, stopped eating, and has lost weight.” I was touched and saw the tears in her eyes flowing freely. “Do you have any family, perhaps children you would like to call to perhaps join us for the discussion?” I asked.

“We have two grown-up sons. One is currently ill with COVID and cannot come, and the other son also suffers from major depression: He has a hysterical paralysis and does not leave the house. I work as a cashier in the supermarket and am the only breadwinner for my sick son and husband.” I wondered if she had any idea of his prognosis and started a discussion regarding treatment options. Vladmir’s wife told me that she had heard that radiation therapy could help.

And while I would have loved to have played the role of knight in shining armor, saving him from the ravages of his cancer with radiotherapy, the reality is that the intervention is controversial in the treatment of trachea-esophageal fistula.

Should I raise the possibility of not doing the treatment? How would it be received? What could I offer in lieu? Was this an opportunity for a being and not doing discussion, one that talks about dignity and love and communication, about having the chance to say goodbye forever and even to confess and bless and confide? Patients and family are so often focused on the battle against the disease; they are loath to any suggestion of not doing, despite the minimal odds for a helpful treatment. 

I saw Vladimir’s wife struggle to control her tears. She seemed so vulnerable and carried so much on her shoulders. I wondered if a hospice discussion, at that moment, would add to her huge burden. There was also a part of me that also debated, selfishly, if I should launch into a lengthy end-of life discussion with the angry waiting patients outside my clinic door? So often, we turn to our treatment armamentarium to avoid these deeply painful and complex discussions surrounding the end of life, particularly with patients we barely know.

I breathed deeply, calmed myself and decided to keep it simple and avoid the dilemma. I gently explained that I could not guarantee good results, but radiation therapy may improve his pain and perhaps allow him to eat and drink. It was the answer she was looking for, though I grimaced as I wondered if it was the answer I should have provided. She seemed relieved and encouraged Vladimir to sign consent. Vladimir arrived at the computed tomography (CT) simulation suite sitting bent forward on the stretcher, drooling into the bowl between his legs. The radiation therapists, already running behind schedule, looked at each other, as if wondering if this was another futile heroic effort. 

“I know what you are thinking,” I said to them. “But perhaps we can help. Let me tell you something about Vladimir, he had a Dalmatian puppy he loved, who took him out of his home for a walk every day after years of deep depression.” Vladimir was contorted in pain, and the attempt to transfer him from the stretcher to the CT couch seemed impossible. All eyes turned to me with a perhaps this is too much look. Suddenly, Ilan, a young Russian-speaking radiation technologist who had recently joined the department, had an idea. “Vladimir, rest a few minutes. You know, I too have a Dalmatian, let me show you a picture.”

The deep lines on Vladimir’s face faded into a broad smile as he took Ilan’s cellphone to see the picture of the dog. From the look on his face, he seemed to be transported far from the simulation suite, and I imagined him romping with his Dalmatian puppy in a sun-swept meadow with gurgling streams and lush green grass and watched as Ilan then slid him effortlessly onto the couch of the scanner.

The scan was completed, Vladimir returned to the ward, and I retreated to my workroom to complete the contouring of the structures for the radiotherapy plan. It was a nasty 12-cm mass involving the full circumference of the upper esophagus and eroded into the trachea, almost obstructing the left lung. The dosimetrist calculated a conformal treatment plan, and as I approved it, I uttered a little prayer that this would make him more comfortable. Suddenly, Ilan rushed in, hair tousled, pale and agitated, and eyes red. We were too late. On returning to the inpatient ward, Vladimir experienced a massive aspiration and died less than half an hour after we had scanned him. Ilan was terribly upset. As a young therapist, this was perhaps his first patient who died so quickly and unexpectedly.

I tried to comfort him. “I know it hurts, but nothing we could have done would have changed what happened. Did you see his face after you mentioned his puppy and showed him the photo of yours? We did our best for him.”

After Ilan left my room, I reflected on the day’s events. Was Vladimir what the rabbis refer to as a “Gosses?”2 (Gosses is a Hebrew word meaning a moribund patient). And if that was the case, was I wrong to even transport him from his room? When death is imminent in hours or days, Jewish religious law defines a state of Gosses in which it is forbidden to touch or move a moribund patient in case this could hasten death. The guttural rattle of a dying patient, unable to clear secretions, indicating death within hours or days, reminded the rabbis of the sound of bubbling when stirring the food in the cauldron. This onomatopoeia, in addition to a didactive narrative identifying the significance of performing an action which potentially changes the natural course of events, resulted in the analogy that moving a terminally ill patient which may hasten death is like stirring the food in the cauldron which may hasten the cooking on Sabbath, hence the term Gosses. The ancient rabbinic sages from the beginning of the first millenium drew an additional analogy between touching a Gosses and touching a dripping candle at the end of its wick which may hasten quenching of the light. Another aspect of the law of Gosses forbids performing any act which may prolong suffering and delay a merciful death. Thus, moving a patient to receive a futile treatment would also be forbidden under law of Gosses. 

2000 years later, the notion that we should neither delay nor accelerate death was front of mind formeas I reflected on my treatment of Vladimir. I wondered if the ancient rabbis incorporated into their moral discussion the difficulty of stopping the roller coaster of trying to do more and more to help the patient. How about when the treatment itself fell into a gray area of effectiveness? What advice would they have given a physician with competing demands on his time and a waiting room full of outpatients who demanded his attention?

In retrospect, the painful journey of Vladimir down to the simulator may have hastened his massive aspiration and would have been best avoided. In that sense, the Gosses may have

been violated. But it also allowed him and Ilan to meet and share wonderful memories of a Dalmatian puppy which made him smile and forget his pain, even for a few precious moments.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today, we are joined by Dr. Zvi Symon, until recently Chair of Radiation Oncology and currently Senior Consultant in the Department and Director of the National School of Radiotherapy at the Sheba Medical Center in Israel and Clinical professor of Oncology at Tel Aviv University Medical School. In this episode, we will be discussing his Art of Oncology article, “Gosses and the Dalmatian Puppy.” Our guest disclosures will be linked in the transcript. 

Zvi, welcome to our podcast and thank you for joining us.

Dr. Zvi Symon: Thank you, Lidia. I'm very happy to be here.

Dr. Lidia Schapira: To start, I'd like to ask authors to tell us what they're reading or perhaps what they've enjoyed reading and would like to recommend to fellow listeners.

Dr. Zvi Symon: Okay, so it's been a bit of a stressful time reading, but I may mention some books I've read in the last few months. I've been reading memoirs. One that I particularly found very touching was Paul Kalanithi's, When Breath Becomes Air. As a physician who had cancer himself and his struggle with his transition from being a consultant neurosurgeon to being a terminal lung cancer patient, I think it's an amazing and beautifully written and touching book. 

Dr. Lidia Schapira: It’s a beautiful book. It's evocative and fresh. And you're absolutely right - we're completely in sympathy with and empathic with his amazing desire to live life till the last moment, right? It's just beautiful. 

Dr. Zvi Symon: It’s really beautiful. And I think that memoirs is a very powerful genre for me. And another book that I enjoyed very much is Jan Morris' Conundrum, which is a story of a person who made a transition from male to female over 10 years. She was actually a member of the British team that climbed Everest and a journalist in The Times. It's a beautiful book describing what she actually felt inside and how she went through the medical process as well, of her sex change. And it's also beautiful.

Dr. Lidia Schapira: Thank you for that. I haven't read it, but I will add it to my lovely list here.  

Tell me a little bit about writing and what that means for you. Are you somebody who has been writing throughout your career, or was this a story that sort of popped for you, that just needed to be told? 

Dr. Zvi Symon: Right. I think it goes back to when I was a high school student where my Math teacher told my parents, "Your son shouldn't do medicine. He should study English literature." My parents were devastated by that statement because my father was a physician and my mother's family were all physicians, and they were very angry at the time. And I was kind of a writer in high school, and then I kind of left it through my medical career. And now, as I have sort of finished my stint as the chair of the department and I have a bit more time on my hands, I've sort of tried my hand at getting back to writing. I needed to read a lot in order to do that. So I was reading genres. I think maybe some of the initial versions of this piece were written sort of more as a memoir, rather than an article for the Art of Oncology. And I think you guys helped me a lot. 

Dr. Lidia Schapira: I'm so glad to hear that we helped. Sometimes editors aren't particularly helpful in the views of authors, but I'm glad you feel differently.  

So let's talk a little bit about the creative process and sort of bringing in all of these themes that you did here. And back to your prior comment that this is in the memoir genre. You have a very interesting philosophical discussion of what a Gosses is and sort of the ethical moral conflict when a patient is extremely vulnerable, instead of recognizing when perhaps all that you need to do, or perhaps what you need to do is to be present instead of trying to fix or intervene. And I loved how you made us all really suffer with you, as you're debating this internally. Can you talk a little bit about that part of the story?

Dr. Zvi Symon: Yes, I think just to put it into context, in my training in internal medicine, I worked in a hospital where hospice care was part of the rotation in internal medicine. I spent three months in the hospice, and at night, when we were on call, we were in charge of the ICU and the hospice. So you would be called to treat a patient in pulmonary edema and with CPAP, or intubate him or an acute MI, and then you would be called to a dying patient in the hospice. And the transition was initially very difficult for me. I actually felt my feet would not carry me to the hospice, and I didn't want to go there, and I had to kind of force myself. But after some time, I realized that it's actually much easier to treat pulmonary edema  to than be able to sit and listen and talk to a dying patient. But the fulfillment that I began to feel when I overcame that kind of fear of going to speak to a dying patient, the fulfillment was far greater than getting somebody out of pulmonary edema. And that's kind of stayed with me to this very day. 

So although radiation oncology is a kind of something you have to do, and you sort of radiate, when I'm called to patients like this, and I do have time, then I kind of sit down with a patient and discuss the options and try to give other options because very often it's a kind of turf in the house of God. Somebody doesn't want to have that conversation with a patient, and they're kind of turfing the patient in a house of God sense to have some radiation. And I'm not sure that radiation in such cases– So this is something that I'm confronting quite often in my daily practice, and it becomes more and more complex culturally because when one is confronted with families who also want to be very active and are dreading having to live with the idea that maybe there's something they could have done that they never did, and they're putting a lot of pressure, then it's a very tough situation. So I'm very sensitive to these situations. 

I've often had end-of-life discussions with patients like that, sometimes against the wish of families that are close by. And the patient would say- well, they'd say to me, 'No, don't talk to him." And the patient said, "No, I want you to go away. Because I think this is the first time someone's listening to me, and I want to hear what he has to say." I feel very passionately about these–

Dr. Lidia Schapira: I have so many comments that we would need hours to discuss. But, of course, the first comment I wanted to make is that some of the most humane oncological specialists I know are radiation oncologists, so I don't see you guys as just treaters and physicists wearing scrubs. I see you as incredibly compassionate members of the cancer team.  

And that brings to mind a lot of the current discussion about palliative radiation, this idea that we can just throw some rads at people because there's nothing to lose and maybe there'll be some improvement in function. So can you talk a little bit about that? I mean, here you are in a very busy clinic falling behind. You've got to walk through a waiting room of people who are sort of looking at you saying, “How can you be walking out when we had an appointment with you half an hour ago?” And you go and find Vladimir, who's despondent and can't have a conversation with you. And I'm pretty sure that you must have been going through this internal conflict even before you met your patient about what to do. Tell us a little bit more about the emotional impact for you.

Dr. Zvi Symon: Yeah. With great trepidation, I actually go up to the department to speak to a patient like this. I think the electronic medical record, for all the problems with that, it allows us to kind of really quickly glimpse and get a true picture of what the situation is. So I had seen the imaging and I'd seen the size of this really very nasty tumor. And I sort of remembered the literature that it's a relative contraindication and it actually may make things worse. But I was getting calls from the department and the medical oncologist who consulted that I must see this patient, and they want that patient to get treated today. So with a kind of a heavy heart, I go up the stairs. I breathe deeply on the way to calm myself and take the staircase up to the 6th floor and walk very slowly up the stairs, trying to go through my mind, what am I going to do, and kind of enter the ward. And then I am confronted by this person who is terribly suffering, very terribly. And he doesn't actually want to look at me at all. His eyes can't meet and he looks kind of, his eyes are very dull. And I see his wife watching me and watching him and turn to her. They are immigrants to the country. And there's also a cultural issue and language problems and difficult socio– 

Dr. Lidia Schapira: If this were fiction, you could not have made it harder. I mean, when I remember reading the manuscript thinking, this poor immigrant, he's depressed, his son is depressed, the other son has COVID, his wife is weeping and says she's the one who's tried to make ends meet. You have all of these barriers in addition to this internal clock that you have somewhere else to be. Can't begin to imagine the pressure. So how did you get through that?

Dr. Zvi Symon: Yeah, I think my mind was kind of ticking over and I think that sometimes we make very practical choices. And I knew that if I sat for too long and I fired a warning shot and said, “Well, this may not help and this may not do it,” but I think that culturally I had the feeling that it was the wrong thing to do and that there was an expectation and the expectation had been created by the team, and it's very difficult to turn down that expectation. And I also felt that she was so frail and that she had really no support and maybe if one of her kids would have come within half an hour, I would have said, “Well, I'll come back after my clinic in the afternoon and let's have a chat with your son.” But the situation was such that I thought, “Well, you just have to be practical and you have to get back to your clinic.” It's a hard feeling that we make value decisions just because it's more comfortable for us. We want to finish our clinic and also go –

Dr. Lidia Schapira: No question about that. Yes, and I think the reader will feel for you, as I did when I read it. I mean, I could immediately sort of imagine all these things playing out. So you follow your intuition, you assess it, you say, “Okay. We'll give it a try,” right? And then you have your team to deal with and your lovely radiation therapist, the technologist who gets personally involved. And then you introduce the idea that perhaps connecting with something in Vladimir's recent past that brings him joy. Can this image of this puppy romping through the fields, is something that can maybe help you all? Like the glue, the emotional glue that keeps you together. Talk a little bit about that part, about how you tried to bring this element out in the story, to give another dimension for the reader, a view not only as the physician giving Vladimir care, but also leading your team.

Dr. Zvi Symon: So I think that an open question to a patient about their– “Just tell me a little bit about yourself,” is an invitation for a person to tell you about the things that they care most about, about the people they love most, that the things were of the most importance in their lives. And I think that kind of human connection, if we can kind of latch onto that and harness that to improve the way we communicate with the patient and the way we get the rest of the team to communicate with the patient, I think that can be very powerful. I mean, I myself love dogs, and I was like, really, my Border Collie just died a few months ago, and we buried her after 12 years, and she was a wonderful animal and part of the family. And in the two minutes that I had to listen to- that's what she told me about, she told me about the dog. And when I tried to motivate the team to add him as an urgent sim and he wasn't cooperating, then it just occurred to me to tell them about it.

Dr. Lidia Schapira: It worked. It was amazing.

Dr. Zvi Symon: And it worked. Yeah.

Dr. Lidia Schapira: It was a beautiful story. I too, am a lover of dogs. I have a wonderful puppy now, and he brings tremendous joy. But your message is so full of compassion and humanity. It's basically back to Dame Cicely Saunders' idea that you want to know who the person is that you're treating and you want to know what matters to them. And so here you caught this moment of connection with the family and with the patient and with your young radiation therapist who needed to feel that he was actually helping this person. So it's a beautiful story. I want to just give you a chance to finish the interview by telling us something perhaps that you want the readers or the listeners to take away from your piece.

Dr. Zvi Symon: Well, I think that the situation of, I think as physicians, we don't really ever know when the patient precisely is going to die. And the whole idea, I think, of a Gosses and my thoughts about the Gosses were, because it's sort of defined within Jewish religious law, someone that is going to die within 72 hours. Now, it's very difficult to define. We don't know that. We never do know that. But I think that that sensitivity to the comfort of a suffering patient and offering a treatment that may be futile or that is highly likely to be futile and that may be involved in an enormous amount of discomfort, I think that we have to be able to sit down with these patients and with their families and discuss other options as just very good sedation and not necessarily, I think, doing, but rather just being there, as you mentioned, for the patient.

Dr. Lidia Schapira: It's a beautiful thought, and I think we all agree with you. And I think what made this story so poignant is that here you are, that time is compressed and you're introduced to the family as somebody who potentially could help fix something or provide something. So it's very difficult to step back, as you say, and do the deep work of sitting and talking and counseling and accompanying. But I think your humanity comes through and your desire to help comes through beautifully in the story. And I really thank you for bringing this concept to our attention. I think that it may be an old idea, but one that is still very relevant. And thank you for sending your work to JCO.

Dr. Zvi Symon: Thank you very much.

Dr. Lidia Schapira: Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast. 

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes

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Guest Bio: 

Dr. Zvi Symon is a Senior Consultant in the Department and Director of the National School of Radiotherapy at the Sheba Medical Center in Israel and Clinical professor of Oncology at Tel Aviv University Medical School.

Listen to ASCO’s Journal of Clinical Oncology essay, “The Gift of Truth” by Dr. Ilana Hellmann, an Attending Physician in the Hematology Department at Meir Medical Center in Israel. The essay is followed by an interview with Hellmann and host Dr. Lidia Schapira. Hellmann shares how it is an immense privilege and grave responsibility for physicians to give bad news to patients who have a terminal disease.

TRANSCRIPT

It was a hot and humid Tuesday in July, and I distinctly remember being grateful for the air conditioning in the pastel-shaded waiting room of the oncology outpatient clinic. My father sat silently beside me. We knew this room well, as we did the doctor we had arrived to see. He had been my late mother’s oncologist until she had passed away just over a year previously from metastatic breast cancer. Dad remembered him being kind yet direct and had requested that he be his oncologist now that he needed one.

I watched his hands fidget with the slip of paper bearing the number that would be called over the loud speaker. My father was 84 and a retired university professor of statistics. He spoke seven languages and his friends called him the encyclopedia as he was an endless fountain of knowledge in history, politics, literature, art, etc.…. His number was called, directing us to a room we had been in many times before. After greetings and some small talk about my late mother, Dr Cohen addressed my dad and slowly went through the history. 

He had had surgery for a squamous cell carcinoma on his scalp along with skin graft 6 months earlier. Two or 3 months later, he complained of pain in his right hip which seemed to worsen by the day. After some imaging and assessment by an orthopedic surgeon, a diagnosis of osteoarthritis was declared, and the treatment recommended was a total hip replacement.

The surgery was performed and my dad, who had been suffering from extreme pain, felt immediate relief. He was delighted with the results of the procedure, delight that dissipated in an instant when the pathology report came back: metastatic squamous cell carcinoma.

He had been quickly referred for a course of radiation which had been completed. This meeting was intended to discuss further treatment. Dr Cohen gently explained that my father’s cancer was not curable and that there was no good treatment available for him at that time.

I do not really remember much of what was said after that. I found myself thanking him for his time and helping my father to the car. The drive home was awful, with awkward silence broken only by a discussion about what he was going to have for lunch. We both pointedly avoided talking about the meaning behind Dr Cohen’s explanations. I was stunned. I felt like my father had been fired by his doctor and that I had been left to deal with the consequences. I felt alone, abandoned, and betrayed.

The next few days passed quickly as I juggled my busy hospital schedule with family dinners, school runs, and the sporting activities of my three boys—the oldest of whom was 11 years old at the time. The weekend came, and on Saturday morning, my husband and I planned to meet friends at the local swimming pool as we so often did in the hot summer months. Leaving him to clean up honey and pancakes, I went across to the apartment opposite ours to say good morning to my father and tell him we would be gone for the better part of the day.

He was sitting up in bed and said: “Before you go, please bring me my phone book.” He still used an alphabetized phone book, mostly in my late mother’s hand writing. I found the book and held it out to him. “Find David Green’s number” he said, which I did. “Dial it please” he said while looking for his glasses on the bedside table. I dialed and handed him the phone. I then listened as he greeted David—an old colleague from his years in academia. Dad had not spoken to David in many years. He explained that he had cancer, and that he did not have much time, but that he wanted David to know how much he had enjoyed working with him and to thank him particularly for his contribution to an article they had published together.

I got up to go and, seeming not to notice, he asked me to dial the number of another friend. Realizing this was going to take some time, I called my husband and told him to take our boys to the swimming pool without me. I sat down next to Dad on his bed and dialed number after number. My parents had lived in a few countries, and my father’s academic career had connected him with people all over the world. Over the course of almost 6 hours, he spoke to friends, relatives, old neighbors, and many work colleagues. He had a personal message for every one of them and started each conversation with a clear and brief explanation of the circumstances of his call.

There were some people who were not home for his call, and he left long messages on answering machines. Those 6 hours were cathartic for the both of us. It was sad but also terribly beautiful and filled with my dad’s signature black humor. Once we had contacted everyone in the phonebook, he continued his mission and gave me a list of people he wanted to be present at his funeral, as well as a second list of those he would prefer not to be there. Then, he handed me an envelope which contained a substantial sum of money. “This” he explained “is for the gentlemen who come to take my body.” My mother had died at home, and he remembered the two ambulance men who had come to take her body to the morgue after she had passed. He had been struck by the difficulty of such thankless work and wanted to make sure they were appropriately compensated.

Very soon after that Saturday, my father had a seizure and was diagnosed with brain metastases. As dad had made it very clear that he wanted palliative care and no admissions to the hospital, Dr Cohen connected us with the services of home hospice care. He deteriorated rapidly and died at home, as he had wished, 3 months later. The money in the envelope was duly delivered to its intended recipients, and there are some people who were not at his funeral. 

I have often gone back to the conversation in the oncologist’s office on that July morning. Oncologists conduct end-of-life discussions with their patients every day. How does one tell the patient the truth without taking away every ounce of hope? Does every patient have to know that he is dying? I had never thought about the immediate consequences of what I say to my patients and their loved ones until I had to get my dad to the car and spend those eternal 20 minutes with him on the drive home.

Bad news is difficult for those on the receiving end but no less so for those given the task of delivering it, especially when it concerns a terminal illness. There are some physicians who avoid telling their patients that their disease is terminal altogether. In not telling patients of the terminal nature of their cancer, are we protecting them or ourselves? And are we preventing them from being able to use the time they have left in a way they would wish with the knowledge that time is limited?

There are those patients who cannot or will not talk about death. Knowing how much to say to each of our patients, and choosing the appropriate words, is an art. The task entrusted to physicians of giving bad news is both an immense privilege and a grave responsibility.

My father received a brutal gift that day. But brutal as it was, it was a gift that enabled him to part, to make peace, and to prepare for his coming death. I have since had countless conversations with my own patients about their imminent demise. I constantly remember my father and that special Saturday. My memories are of tears, and of laughter, and most of all, of a sense of closure for the both of us. I hope that I am able to give my patients their truth in a way that will make it as much a gift for them, as it was for him.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Ilana Hellmann, who is an Attending Physician in the Hematology Department at Meir Medical Center in Israel. In this episode, we will be discussing her Art of Oncology article, “The Gift of Truth.” 

At the time of recording, our guest has no disclosures. 

Ilana, welcome to our podcast, and thank you for joining us.

Dr. Ilana Hellmann: Thank you for inviting me. It's wonderful to be here.

Dr. Lidia Schapira: You've been on our show before, so let me just start by diving right into your beautiful article. It honors the memory of your father, a Professor of Statistics, who had an encyclopedic knowledge of the world and spoke seven languages and was known by so many different people. And you start by bringing us to the moment in the waiting room of the oncology department that was familiar to both of you because your mother had been a patient and you had very carefully selected the oncologist for your father. You say it was a July humid day, and his number is called. And then what happened?

Dr. Ilana Hellmann: Well, as I wrote, all the moments that you've just repeated from the article are things that are imprinted in my mind as if it happened yesterday. My father passed away in 2014, and there are those moments and many others that I remember very, very clearly. It's something I hear from my patients also all the time. They remember exactly the day they received the diagnosis, the time of day, they tell me what I was wearing when I told them whatever it was I told them. And it's something that struck me that when I went back to that day and many other things that happened afterwards, I remembered every second. I think I knew what the oncologist was going to say in retrospect, but at the time, maybe I didn't think about it. 

It's very interesting that we as physicians, especially oncologists, we know exactly, but when it comes to family members, we're a little blind. And I've had this experience a few times since my mother passed away from cancer. My father and my father in law passed away just over a year ago, also from metastatic pancreatic cancer. So we know it very well. 

Dr. Lidia Schapira: Sorry. 

Dr. Ilana Hellmann: As I wrote in the article, I remember going in with my father. I remember the conversation, or at least the beginning part of it, but once the message hit home that, “This is what we have, the bottom line is there's not a lot we can do. We certainly can't cure your disease.” I don't remember anything else that happened after that.

Dr. Lidia Schapira: And you described the ride home after that. You mentioned that you felt your father had been fired, had been fired from anything that was perhaps curative or offered sort of some optimism, perhaps the conversation was a little deeper and supportive and offered some palliation. But what you took away was that this was awful. He was fired. Then you say the ride home was really difficult. 

Tell us a little bit about that. What was it like to leave the oncologist office as the sort of informed knowledgeable daughter who had just received this message?

Dr. Ilana Hellmann: Exactly that. And I kept thinking in my mind, “How much do I say, what is he thinking? How much does he understand?” I was almost jealous, a little of people who have no medical knowledge. So much easier. Maybe it's not, but I think it's really tough for physicians as family members of patients who are unwell. But my father was, as I described, an exceptionally intelligent person, a real intellectual. He was enormous, not physically, but there was nothing he didn't know. You could ask him anything. He read the dictionary for fun. These are things that he liked to compare languages and cancer made him very small. And it was awful. It was just awful, awful to see. And that moment, it was very emphasized how small he was. He was just silent. There was just nothing, and I didn't know what to say. I felt absolutely helpless. And as I described, that drive is 20 minutes, maybe even a little less. It was endless. 

And I remember that I went home with him. It was lunchtime, and I dropped him at home and I went back to work. I think I had taken the day off, to- I didn't know what was going to happen with the oncologist, and I went back to work because it was easier to go back to work than to stay at home. And he was silent. He said nothing. And the next time I understood what he was going through was on that Saturday with everything that happened. 

Dr. Lidia Schapira: So fast forward to that Saturday, I imagine that you were busy with your children and your work, and it was easy to– I’m going to use the old fashioned word compartmentalize, put this aside for a little bit. And then on Saturday you’re going in to say, “Hey, I’m going to take the children to the pool. How are you?” And he had a completely different idea of how you were going to find yourself spending the day. And I think that’s such a powerful scene in the essay when you say that he started one by one asking you to dial his contacts, his friends, his colleagues and give a message. Tell us a little bit about how that felt and bring us to the bedside or to the scene if you can.  

Dr. Ilana Hellmann: So there's dad. He's in bed. He's got his morning cup of coffee. He lived with a full-time carer at that stage, who brought him some breakfast and a cup of coffee. At some stage, she brought me a cup of coffee. He was very, very focused. It was like I was an assistant, just doing what he needed so that he could talk to all the people he wanted to talk to. It was crazy. It was like watching something surreal. There were people he hadn't spoken to in 20 years that he called. He had no concept of what time it was in various parts of the world, so he woke people in the middle of the night. It was really quite something. People didn't believe me afterwards when I told them the story, and as I say, some of the conversations were very, very humorous. My father had a wicked sense of humor; very black sense of humor. So, there was lots of laughter mixed in with, “I'm dying, and I have cancer.” Lots of humor, and there were a lot of tears, mostly on my part because my father was not a tearful type. He was emotional, but he didn't cry. But I remember being very tearful. I didn't know all the people. Some of the people were people I'd heard of when I was a child, all sorts of neighbors, people we'd lived next door to years before when I grew up in South Africa. 

And when he'd finished, he had this sense of- he was satisfied, “I've done what I had to do.” And then he moved on. He had his list of things he had to do, the money he wanted to give to the ambulance workers, the people he wanted at his funeral, he didn't want to go to his funeral. It was typical of my father to do something like that. He planned everything. And it was like he'd had a box that he had to seal and tie a ribbon and it was done. And then he was finished and he was ready and he let go. It was amazing. It was beautiful.

Dr. Lidia Schapira: When I read your essay, I felt that that was the gift he gave you. You have the word ‘gift’ in the title. But it's such an amazing scene for a father to be able to do, sort of a review of his life while he's still living. Instead of leaving you a box with all of his memories, he basically showed you and gave you this loving and exhaustive, comprehensive demonstration of what his life had been about.

Dr. Ilana Hellmann: Absolutely.

Dr. Lidia Schapira: And in some ways, some of the dimensions that he touched were the professional dimensions that perhaps as a child or a young adult he would not have been able to access. But you saw how big he was. What an amazing thing. Did you and he ever talk about that? What it was that led him to do that? Or was that just something that happened and you sort of both understood and just walked on?

Dr. Ilana Hellmann: It was beautiful and it's certainly a gift I've been left with. There was the gift he got and the gift I got. It was a little intense. Six hours of calls was exhausting. I remember when my husband came home and I told him, he immediately poured me a glass of wine. It was very, very difficult and it took me a long time to go through. I had no time to recover from one conversation to the next conversation. And he just kept going. He had very little breaks during the day. There were a lot of people he had to talk to, and he wanted to finish it today. He thought he was dying next week. That's not what happened. He never spoke about it again. And that was quite typical of him. He was like, “What's done is done. I've said what I had to say.” There were a lot of things that he said that I heard from the conversations that he had. And as you say, there were various gifts during the day that were told to other people but intended for me and for my younger brother who was not there at the time because he lived in England. But we never discussed it again. That was the way my father was.

Dr. Lidia Schapira: You know when we, as physicians, tell patients who are sort of nearing the end of their life to say what they need to say to be prepared, this is exactly why, right? Because very soon after that, he had a seizure. He had brain metastasis. He might not have had the stamina or the ability to do what he did. So that is a very important lesson. I was incredibly moved by that scene, and I've probably read it a dozen times. You've probably thought about it a million times, but certainly this reader took a lot from that very beautifully described scene and so nicely told. 

So for the last few minutes, tell us a little bit about how this personal experience has impacted your delivery of news and your relationship with the patients. You start by telling us that often, as oncologists, we give bad news but then we just move on. But people live with this, people go home like this. How has that experience as a daughter impacted your delivery of news? 

Dr. Ilana Hellmann: Absolutely. There are a few parts of how it's influenced me. Somebody who read the article when I was writing it had said to me, "Wow, do all physicians have to go through these things to be able to identify with their patients or their family members?" Well, I hope not. It's a terrible thing to think of that each of us– On the other hand, there's no question that when you've been through something, you identify with the person in front of you if you know what they're talking about, you know what it's like to be a mother, you know what it's like to be a daughter. You know or you don't know what it's like to lose a parent or somebody else and the experiences that I had and I imagine anybody else have had with interactions with the medical community, with doctors, with the emergency room, with all sorts of things are things that influence the way I approach patients.

So one of the things is true. I'm guilty of the fact that it didn't occur to me that I sit in my room, I see a patient and his daughter, his wife, his whatever, and I give them this news, and then I leave the wife to deal with him outside. Or the fact that when the oncologist said, “We haven't got curative treatment for you,” and I didn't hear anything else after that. Well, we know that when we tell patients something not good, there's often no point in carrying on the conversation and talking about treatment and side effects and whatever because they're not there anymore. And that's something that I remember very clearly from that.

You can't go with the patient, you can't go home with them, you can't get in the car with them, but you can remember it, think about it, choose your words carefully, maybe have a word with the spouse or the family member, whoever it is, as they're leaving outside the door, “If you need anything, call me.” Maybe call them. Sometimes, I've seen that it's difficult, and I've called them the next day. That definitely has influenced me. I'm not sure there's a lot you can do about it, but I think about it. In terms of telling patients that time is limited, that you're not going to live forever, it's hard, and we want to give patients good news. It's so much easier to tell a patient that their PET CT is clear than that it's all come back and the prognosis is not good. 

So I try to understand where the patient is and how much they want to go. Most patients will lead the conversation. Most patients know to tell you how far they want you to go. And I've never been sorry about telling the patient that their prognosis is bad and that their disease is terminal. And I've had lots of return conversations from families after patients have passed on about the conversations they had, about the things that they did, about the fact that the patient decided maybe not to have more intensive treatment, went on a holiday, decided not to come to the emergency room with a fever or whatever it was, and elected to stay at home with hospice. 

I found that that side of oncology is no less rewarding when you have to accompany a patient on their lost journey. I've found over the years that it's actually no less rewarding than the patients who are cured. And then you see them once a year and they come and they say everything's good. 

Dr. Lidia Schapira: And that perhaps is part of what we call the art of oncology, which is the being in relationship, connecting with somebody, being a rock or a source of guidance for them when they're going through incredibly vulnerable times. I think that's not something that perhaps others recognize as being rewarding, but for those of us who are drawn to it, it can be incredibly rewarding. 

Thank you, Ilana. This is a beautiful conversation and such a lovely essay. I imagine there's a reason for this taking about ten years to process and write, because the impact is so deep, but you managed to do that. For that, all of the readers of JCO are grateful to you. So I thank you very much. 

Dr. Ilana Hellmann: Thank you. Thank you for taking it and publishing it. 

Dr. Lidia Schapira: So until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes

Like, share and subscribe so you never miss an episode and leave a rating or review. 

Guest Bio: 

Dr. Ilana Hellmann is an Attending Physician in the Hematology Department at Meir Medical Center in Israel.

Listen to ASCO’s Journal of Clinical Oncology essay, “Do You See Me?,” by Dr. Kristen McCullough, a Hematology Clinical Pharmacy Specialist at Mayo Clinic. The essay is followed by an interview with McCullough and host Dr. Lidia Schapira. McCullough shares a pharmacist's perspective on experiencing a patient loss.

TRANSCRIPT

“Ope!” is the common Minnesotan exclamation when you bump into someone you did not see. As a pharmacist working in ambulatory care, I am more apt to hear it than most. I am a convenient presence in clinic life, available when needed, but I was trained to be as unobtrusive as the beige and bespeckled wallpaper that shrouds the hallway. After a decade, many still struggle to get my name correct. I hear a muttered thanks occasionally, but I know minds are fixated on the next patient, research question, grant deadline, or difficult conversation. 

I try to be accessible when you need me, from the minutiae of learning to order ondansetron as a new fellow to managing catastrophic relapses with multiorgan failure as a seasoned physician giving salvage chemotherapy. On nights, weekends, holidays, or when we are separated by a dozen time zones, I am here. We have navigated the uncomfortable waters of chemotherapy in hemodialysis, written clinical trials, obtained medication on compassionate use, and fought with insurance companies. I bear the brunt of your frustration when the electronic medical record feels cumbersome and ordering chemotherapy is just not like it used to be. Do you remember asking me to “just fix the system” in sheer exasperation but high-fiving me a few weeks later when you entered a chemotherapy plan without my assistance or corrections? I know that needing my help feels inefficient, impractical, and almost like a failure. You wish it was an easier, simpler, and more self-reliant system. 

But there are many times when you do not need me. When things go well and the bone marrow shows a complete response, the BCR::ABL1 is undetectable, or the positron emission tomography scan is clear. I am absent in those often fleetingly beautiful moments when you say “The cancer is in remission!” and you joyfully dismiss your patient. Did you forget that I had planned a visit? It is the desk staff who graciously tell me that my visit was presumably canceled. The patient has already left for the day. I am overjoyed for them, but it is bittersweet to be forgotten.

Do you remember that gray and rainy afternoon in late October? I was in my office after your visit was done that difficult day. You left the examination room after an emotional and raw conversation about resuming therapy and asked for my help. You imparted the bad news and plan, but it was my job to carry out your instructions. I held their hand, sat with them through mutual tears, and paused many times for collective digestion of the information. I explained the differences between their last round of treatment and the new plan. I talked about topics that are difficult and uncomfortable: financial consequences, physical appearance changes, every side effect from hair loss to sepsis, and the need to stay in town and miss thanksgiving at home. It was well after 6 o’clock when I escorted them to admissions and we parted ways. The lights in our department were dim, and everyone was gone. You needed me. They needed me. 

Together, as a pharmacist and a physician, we spent weeks managing side effects for our patient, from nausea and vomiting to blood stream infections and transfusion dependence. I fought with insurance for drug approval, spent many weary hours in front of a fax machine obtaining charitable grants to cover copays, and plead with companies for patient assistance and free medication. We hopped from regimen to regimen, enrolled on clinical trials, and entertained the thought of compassionate use when precision medicine testing yielded a potential target. Weeks turned into months, and months turned into exhaustion. Despite all the awful things happening, our patient snuck treats into appointments and sent portal messages of their bucket list adventures, even if they became increasingly more home centric. Bad days started to outweigh the good as time marched forward.

I was the first person to murmur the words comfort care as a potential next step just before we walked into the next visit. As a physician, you were angry at me for putting these words

out into the universe and called me naïve. I do not think you intended to be hurtful, but I am reminded of my place. It was just shy of 3 weeks later before you and the patient made that mutual decision when chemotherapy was no longer an option, and visits with me ceased. My services were no longer viewed as necessary. I did not get to see our patient again, except for a couple of In Basket messages.

I first read about their passing through an electronic medical record alert that I am entering a deceased patient’s chart while data collecting for a project. Their photo is now gray, and their demographics are a stark red. The chart feels hauntingly cold. The obituary was filled with healthy pictures and beautiful memories. Did you read it too? I missed the memorial service because no one told me.

I closed the obituary and took the back roads home from work. It was a beautiful June day, and the sunshine felt warm and welcoming through my open windows. I wanted our patient to feel remembered, even if my remembrance was not particularly meaningful. Over the next few weeks, I embraced all the things we talked about in our visits. I listened to Earth, Wind, & Fire, their favorite band. I went to the driving range and exploded with laughter at my atrocious hooks and slices. I visited the local ice cream shop and indulged in mint chocolate chip ice cream that melted down my hand from a gigantic waffle cone. I sat on the dock and watched the sunset from the best vacation spot in the Midwest: a Minnesota lake.

A year later, I smile when my playlist cycles through their favorite song, but the weariness of this rhythm grows heavier. As a physician, I hope you will see this side of my practice and the human being in this story, someone who meets patients where they are and agonizes alongside you at the loss of human life; someone who is crushed by the same weight of bureaucracy, red tape, archaic rules, and biases; someone who fights against the archetype that a pharmacist should be seen and not heard; and someone who will relentlessly remind you that pharmacists are brighter than an insurance claim or copay frustration. I hope someday you see the person connected to the In Basket, e-mail, pager, or phone as a team member and not a referee. I hope one day you simply see me, utterly human and some days utterly broken. 

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. 

Today we're joined by Dr. Kristen McCullough, a Hematology Clinical Pharmacy Specialist at Mayo Clinic in Rochester, Minnesota. In this episode, we will be discussing her Art of Oncology article, “Do You See Me?” 

At the time of this recording, our guest has no disclosures. 

Kristen, welcome to our podcast and thank you for joining us.

Dr. Kristen McCullough: Thank you for having me.

Dr. Lidia Schapira: It is our pleasure. I like to start these conversations by asking authors to tell us a little bit about their reading preferences. Do you have a book you'd like to recommend or something you're currently reading that's captivating your attention?

Dr. Kristen McCullough: I just started a book called The Measure, which I think so far is excellent. It's about everybody in the world that is an adult receiving a box, and in the box is a string purported to be a measure of the length of your life and whether people choose to open the box or not open the box and what you do with that information. I think that is so closely tied to what we try to do in our day-to-day jobs, which is kind of this foretelling, future telling, and whether or not people want that information or don't want that information and what you do with it. So far, excellent, incredible read. Looking forward to kind of seeing how it unfolds. So that's what I’m reading if you can call that fun, a fun standpoint. 

Dr. Lidia Schapira: Oh, I hope it is fun.  

Dr. Kristen McCullough: A fun standpoint. I did just finish a Masters in Pharmacy, Business and Administration so I did a big chunk of reading that was more business-y and that was more focused on leadership and culture and that kind of thing.

Dr. Lidia Schapira: How fascinating. Well, the book sounds very interesting. So it's an interesting segue to your essay. What made you write and then submit your work to be read by Oncologists? In other words, the sentiment is very clear and we'll talk about the message. But what was the process that you used that led you to want to share this work through Art of Oncology?

Dr. Kristen McCullough: I've written for a very long time, much of it personal. Obviously, this job is very personal. It's hard not to be. And so I write for myself as a form of processing and I wrote this particular piece a while back simply as a means to help myself understand where my frustrations and sort of my difficulties with this job come from. And not that it's bad difficult, but it's just ongoing how do you get through some of the things that everybody deals with? 

The more that I read through it, it was a piece that I went back to time and again because the feelings continued to surface in a variety of different ways. I thought, am I the only person that feels this way? I discussed the sentiments, but not the article in specific with a couple of colleagues in pharmacy and they said, “Gosh, I feel this sentiment, who are we in the care team and where do we fall and what’s our place?” And I felt like it was an important time to share that as our field grows, as our capacity on a care team grows, to make sure that people understand who we are and what we can provide and that we are important to patients in a variety of capacities.

Dr. Lidia Schapira: Well, you sure are. You're indispensable. So thinking about this, I totally appreciate the sentiment that pharmacists are very important members of the multidisciplinary and interdisciplinary cancer team. But what you, I think, showcase in this article is that sometimes as individuals, they may remain invisible or not as visible as they ought to be. So what I heard in this article, and please feel free to correct me, but this is my interpretation as a reader is this is sort of a letter of sorts to the oncologist, the trainee, the attending physician, the clinical investigator who partner with you in clinical care. And what you're saying is look at the emotional labor of our work and we are often not recognized and not brought into the team in the way that we ought to be. Did I get that right?

Dr. Kristen McCullough: Yes. I think we are being brought into the fold more and I want to do service to the people that I work with. I mean, that change has happened very gradually. I've been with a very dedicated group in the past 10 years and that is improving and growing. You certainly have to demonstrate your capacity to provide services and be available. But sometimes the greater sentiment when we try to remember who a care team is, we're very good at saying that our care team is physicians and advanced practice providers and nurses. And it just doesn't seem to sift down to saying and pharmacists. And I don't think- it's never a conscious exclusion. It just doesn't seem to quite get there. And sometimes that can be hurtful when it's heard again and again and again. 

And I want people to remember that we make these tremendous connections with patients repeatedly. They are emotionally connected to us just as much as we are to them. And so when I lose patients, I feel that too, and I want to share that with my providers. I want to say, “Gosh, do you remember these incredible experiences we had and how funny this was? And do you remember their kids and their grandkids and the things that they brought to the table?” Because I was just as impacted by those experiences as I think that they were. 

Dr. Lidia Schapira: You also talk about the specific expertise that you bring. What struck me, for instance, was saying,”We gave chemo through hemodialysis together, the advocacy part. We're the ones left looking for the authorization or helping people with payment.” And then you talk about the human connection of, “We are the ones who are left explaining what the treatment actually will look like, what the side effects may be of that particular treatment.” All of which is incredibly important for the practice of oncology both in a community or an academic setting.  

And then you actually take us on. A bit more of a personal journey of what it felt like for you to learn that a patient had passed and how you found a way to honor that connection that you had and remember this patient. Can you tell us a little bit more about what that was like for you, this journey that you took with this particular patient, listening to the music they liked and eating an ice cream for them while you're watching the sunset on the lake?

Dr. Kristen McCullough: Most importantly is I can read everything that happens to a patient in a hospital. I mean, we know every time they eat and sleep and sneeze. And so the more important part to me is if I'm going to send you home, particularly because our therapies are now far more outpatient based, is what are you doing at home that's good? And what are you not doing? What are you not participating in that you wish you could participate in? Because that's more telling to me of what my therapy is causing that's preventing you from participating or that you aren't doing because we told you that you couldn't. If my therapy causes some sensitivity and you hear that and you think, I can't go outside and how do I fix that? Because I want to make sure you go to grandkids’ baseball games and how do we accommodate those things?  

And so I try to listen for that, and what I get out of that is the human side of my patient, what pieces are important to them. And that's where you hear those things. What's your favorite music? What concerts are you going to go to? What are you looking forward to? If you could eat anything, what would you want to eat? What would make you feel better? How do I make that happen? If you could feel well enough to do anything, what's the most important thing for you to do? And I think that's what I remember most about patients is they wish they could get back on their motorcycle. They wish they could go fishing off the dock, they can't taste their favorite ice cream anymore, those kinds of things.

And so that's what I remember. And I don't have a great way to memorialize patients. I can't go to funerals across the country. I mean, I can write cards and call families if it's appropriate, but I need a sense of closure in some of these instances. And so the best way for me to do that is to try and remember them through an activity that I think would make them chuckle, make them laugh, be like, “Oh, I knew she'd never get on a motorcycle. I knew she would never listen to that song from the 70s”, something like that. And so that's what I did for this particular patient, was think about the things that they did. And we laughed about try and process through that particular sentiment because it was just the only way I really knew how to when I wasn't part of the process for the rest of the team. When the death note comes through, and the nurse knows and the event practice providers know and the providers knows and the providers call the patient’s family and they send a card and I just didn’t know. So I had to kind of process in my own way and laugh. 

I mean I’m a terrible golfer, horrible. I went with my husband and I can’t hit a golf ball to save my life, and hooks and slices, and it was terrible and I laughed. It was good to laugh. It was good to imagine my patient thinking, “Oh, my goodness. She’s just atrocious.” 

Dr. Lidia Schapira: So I think this is the first time in the 20 plus years of Art of Oncology that we've presented a pharmacist, a clinical pharmacist point of view, and I'm so appreciative of that. We've been getting more and more stories from other members of the team who also felt somehow they weren't sufficiently recognized. And I wonder if you could tell our listeners a little bit about how you imagine that the care should be implemented to perhaps include clinical pharmacists in some of these activities that you say are sort of routinized by care teams but may actually leave important members out. 

Dr. Kristen McCullough: I think the hardest part for me is when patients are making a transition to comfort care or to hospice. Include your pharmacist as part of that because we either have connections in hospice care - I've got colleagues in hospice care - or at least let me help the patient make that move as well. Can I help pull off medications that they don't necessarily need to be on so they're not at home on statins and all sorts of other medications that they don't need? Can we help have that conversation to make it easier? Even if I'm not part of that, then at least let me know that the patient has made a transition because I think other care team members are aware. And if there's support that I can provide in that, I'm really happy to do that. And then if the patient passes away, it would be nice to know and be part of that information piece as well if that's possible.

Dr. Lidia Schapira: You bring up some very valuable points that I think could benefit care and could certainly strengthen the team approach to patient care that is sort of increasingly being adopted in cancer care. One is that you have knowledge that could help patients across these transitions of care, and two is that your input doesn't end when active disease modifying therapies stop. You still have a lot to bring. And then it's the personal part of really feeling that you're integrated into the care team. And I think perhaps wearing your new MBA leader, you can introduce some changes in your system and then kind of lead the rest of the country in thinking about how to restructure the role of the pharmacist and the care team.

Dr. Kristen McCullough: We can dream big, right? 

Dr. Lidia Schapira: That's what this is about. 

Dr. Kristen McCullough: Gosh, that would be ideal. And there was a really nice article in the Journal of Oncology Pharmacy Practice that talked about the state of pharmacy care across the country in oncology pharmacy. And I think we have pharmacists in a lot of incredible places, whether it's clinics, infusion centers, specialty care, inpatient, but we're short and we've got a long way to go. So any advocacy that we have from cancer centers and providers to help us and to recognize the value add, it will be incredibly beneficial because we can't advocate alone. We need support. 

Dr. Lidia Schapira: I know that there are lots of people who are reimagining cancer care and thinking about how technologies are going to also help us in the future. So I hope some of them are listening to this. I have one final question about this, and that is that from everything you're saying, pharmacists have a real connection with patients and provide advice and so on. What kind of communication skills training do pharmacists receive these days?

Dr. Kristen McCullough: So you're asking somebody who went to pharmacy school a very long time ago.

Dr. Lidia Schapira: You look very young to me.

Dr. Kristen McCullough: It's been a hot minute. They do have rotations, specifically a year of rotations after they've completed their didactics, where they have to orient in a variety of care settings, so whether that's inpatient or outpatient, retail, hospital, etc., where they're introduced to the patient experience. Where they have to learn to interview patients and complete medication reconciliation, and learn to ask good questions and elicit good information. But I think a majority of pharmacists that most people and I don't want to be all encompassing here, but that most clinicians are seeing in outpatient settings and even in hospitals are working with have gone through a residency program. And residency programs are optional. They're a couple of years after you finish pharmacy school. That is where you kind of get a lot of really core experiences in specialty care that give you that experience working directly with patients. It gives you research experience, a lot of more academic if that's what the pharmacist is interested in.  

But truthfully, and I will be honest here, we don't get a lot of good experience in how to manage death and dying. That comes from working with clinicians. And some of the very best learning experiences I have ever had have come with the clinicians I've worked with. The things that they've taught me in terms of conversations and listening have come from the people that I work with and I will treasure those experiences for a lifetime.  

So, include pharmacists. Help us learn to be part of those so that we can help you have those conversations because patients talk to us about those things long after you've left the room and we need help learning how to do that and we learn best from you.

Dr. Lidia Schapira: Thank you so much, Kristen. I think this has been a lovely conversation, certainly inspiring. And again, I think that there are so many opportunities to take your message forward. So thank you very much for the work that you do, for your thoughtfulness and for this lovely reminder or perhaps lesson for clinical oncologists. 

Is there anything else that you'd like to tell our listeners today?

Dr. Kristen McCullough: I'm grateful for the opportunity to have this conversation and like I said, for the people that I've learned from over the years, it's been a tremendous experience and I'm looking forward to the continued endeavors to grow in this particular area. 

Dr. Lidia Schapira: And we will be watching. 

Until next time. Thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO shows at asco.org/podcasts.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

Show Notes

Like, share and subscribe so you never miss an episode and leave a rating or review. 

Guest Bio: 

Dr. Kristen McCullough is a Hematology Clinical Pharmacy Specialist at Mayo Clinic in Rochester, Minnesota.

Listen to ASCO’s Journal of Clinical Oncology essay, “Buenos Días: A Letter to My Patient’s Mother,” by Dr. Jenny Ruiz, Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine. The essay is followed by an interview with Ruiz and host Dr. Lidia Schapira. Ruiz shares a poignant story of a pediatric oncology immigrant family, social determinants of health and similarities to her own family’s experience.

TRANSCRIPT 

Dear Gabriela,

“Buenos dias,” we said to each other in the pediatric intensive care unit. It was July of my first year of fellowship, and I was meeting you for the first time. From the start, you were there as a family unit, you and your husband supporting your two sons and each other. You were not new to the health care system or to pediatric oncology. But this was the first time you encountered a Latina, Spanish-speaking oncologist. When you heard me speak Spanish, I saw the relief in your eyes, a relief that I had seen before with my previous Spanish-speaking families. An immediate rapport was struck, fortified by our common language, cultivating an environment of trust. It stirred memories of the numerous instances when I accompanied my chronically ill grandfather to his medical appointments, often assuming the role of a medical interpreter for his care team and yearning for such a connection.

I learned that your son had recently completed therapy for his first cancer, and because he (and your family) has a genetic predisposition to cancer, he required surveillance scans. That summer, his whole-body magnetic resonance imaging picked up an asymptomatic brain tumor.

So, our lives became intertwined and I became your son’s pediatric oncology fellow. I would never imagine the events that would follow in the next 4 years.

I couldn’t help but notice the similarities between our families. My family also immigrated from Mexico to the United States in search of better economic opportunities. They too primarily spoke Spanish and worked manual labor jobs earning minimum wage. They too had a genetic predisposition to a chronic disease (although not cancer), and because of this, they too saw multiple family members die at a young age.

You told me about your brother who died in his 20s from cancer and how your father had a similar fate in his early 50s. Back then you didn’t know that your family had a cancer predisposition.

Perhaps the local hospital in Mexico where your family was treated didn’t have the genetic tests, or maybe your family could not afford such tests. I never asked you. My maternal great grandfather also didn’t know why he had end-stage renal disease at a young age in rural Mexico. Even if the local hospital did have the tests, my family could not afford them. Just like your family, it was here in the United States that my family uncovered our own genetic predisposition, but, in our case, it was to kidney disease. Sadly, knowing the root cause did not prevent early deaths.

You told me about the events that led to your son’s first cancer diagnosis. He was having leg pain and was about to turn 2 years old. You went to his pediatrician for a sick visit and routine vaccines. His leg pain worsened after the vaccines. Scans were ordered and unfortunately showed a tumor. You shared how in your mind the vaccines and the cancer were linked and how you worried about future vaccines. I listened to your worries and explained that vaccines did not cause his cancer. This reminded me of conversations I had with my own mother and aunts who would ask me medical questions: was it normal for a healthy young adult to have hypertension?

What are kidney cysts? These early family experiences ingrained in me the importance of communicating in plain language and the responsibility we have as physicians of educating our patients and their families. I would later learn in my medical training that not all physicians learned these communication skills or prioritized them. 

Your worst nightmare came true when we found his second tumor, this time in his brain. You and your family prayed that it was a benign tumor relying on your deep faith in God. So, when I broke the news that it was a malignant tumor, it was far from a buen diıa for your family. Your son had a quick postoperative recovery, and we made plans that I would see him in clinic the following week to discuss his treatment plan.

“Buenos dias,” you said to me in clinic. You were there again as a family unit, both you and your two boys. We discussed the treatment plan in Spanish, and you asked thoughtful questions about the chemotherapies he would receive. I was impressed that you remembered side effects of medications from his previous treatment and that you learned to use the patient portal on your phone. I also noticed how you had mastered enough English to communicate simple things with the nurse or with the physical therapist, but you preferred to speak to me in Spanish. You son was well plugged into our large pediatric academic medical center and all the support that came with it. Our nurse navigators helped you coordinate multispecialty appointments. But I was acutely aware of what another subspeciality appointment meant: another day off work for your husband without pay, or if he did go to work, it meant you had to figure out transportation as you did not know how to drive, challenges my own family members experienced.

So, we started outpatient treatment, and I saw you on a weekly basis. Your son tolerated his therapy exceptionally well and continued to have many buenos dias that you were grateful for. In between updating me on how your son was doing at home, your husband would lovingly tease you and make light of what I am sure was a very stressful situation. Your older son would also come to the appointments, and at one point, we ended up talking about school and going to college. I shared with him that I was the first one in my family to become a doctor and how important it was to work hard in school now, so later on, he could apply for scholarships, and one day, he could be the first in his family to go to college. I told him, “If I can do it, you can do it too.” I could see his excitement in his eyes. At the end of clinic, you ended with “Muchas gracias doctora.” 

Six months later, your son completed his therapy and began surveillance scans. You shared with me your anxieties around these scans. I tried my best to normalize your feelings. Thankfully, your son’s scans continued to be negative for tumors and he continued to have good days. Every so often I would remind you about the importance of your own surveillance scans and you would nod your head. This was not new to me as I had taken on the role of reminding my siblings and cousins to schedule their annual health visits and have screening tests for kidney disease given our family history.

A year and a half went by, and then during one of our routine visits, you told me that you were not doing well and that, in fact, you were having malos dias. I asked you what was going on, and you told me how you had gone to your local community hospital for abdominal pain and had been diagnosed with stage 4 pancreatic cancer. I was shocked. After updating me on your son and how well he was doing, you asked me a question that stayed with me, a question that my own family members had asked me before: “What is the prognosis for this?” You caught me off guard. I turned the question back to you and asked you what your oncologist had told you. You said they hadn’t given you numbers and that you understood that a higher stage was bad. You looked at me with pleading eyes. I told you how my specialty was children with cancer and that I did not know the numbers for adult cancers. I encouraged you to talk with your oncologist more about this. Although this was during the first year of the pandemic, I gave you a hug. Although I didn’t say it out loud, we both knew this was not going to end well. 

I called you the following week to check on you. I asked if you wanted my help to get a second opinion at the academic adult hospital next door. You explained that you were about to start therapy at your community hospital and that since you didn’t have health insurance because of your undocumented status, you didn’t want to pursue a second opinion at this time. I told you that if you changed your mind, I would be happy to help.

I didn’t hear from you for several weeks, and then I got a notification that your son had multiple emergency department (ED) visits. In his electronic medical record, I read that it was your husband who had brought him in for vomiting. I read in a note that your husband had told the ED team that you had recently died. I was in shock. I cried for your sons who were left without a mother and for your husband who would now have to learn to navigate the medical system by himself.

Two weeks later, I saw your sons and your husband for what I thought was going to be a routine visit. I was shocked when your husband told me that child protective services had been called on them by the hospital social worker. He told me the story that instigated this call. Your older son, now a teen, was struggling to deal with your death. One afternoon, your husband asked him to take out the trash and your son had an emotional outburst and said some disrespectful things to your husband. Your husband reacted quickly and flicked your son’s cheek. This story was shared by your older son to the social worker who made the report. My shock turned into anger, and I did my best to stay composed in front of him and your sons. I understood your husband’s reaction, as respect to parents is a core value in Mexican culture.1 I wondered if the social worker understood this. Before I left the examination room, I told your husband that the medical system can be biased and warned him to be careful and know his rights. For my own extended family had experience with child protective services, several years back my young aunt, a first-time mom, lost custody of my infant cousin after an unwitnessed fall that resulted in brain injury. I wondered if the outcomes would have been different if she was white, wealthy, and well-educated. I would later learn in my medical education the disproportionality in reporting by race and ethnicity.2

Once back in the work room, I cried sad and angry tears. Sad that your husband had to go through this process and the added stress after the recent trauma of your death. Angry that I, the physician with the longest continuity with your family, the physician who spoke your primary language and understood your culture, was not notified before the reporting. Angry also that this system was yet again failing our most vulnerable populations. Knowing that when resources are limited, it is low-income, non–English-speaking families that usually get neglected first. Child protective services investigated and concluded that no major action was warranted. 

Thankfully, your son’s surveillance scans continued to be negative. In the next couple of months, your husband learned to navigate the clinics, the ED, and the hospital. Unfortunately, language barriers made this navigation stressful, and more than once, miscommunication with ED doctors increased his anxiety about the possibility of recurrence for your son. I reiterated to him to call our clinic with any question, saying that I’d rather we answer his questions instead of having him worry weeks on end at home.

Several more months passed, and your son was due for surveillance scans again. I got a call from the social worker that day notifying me that your son came with his uncle to his scan appointments because your husband was admitted in the hospital and that there was concern for cancer. This was completely unexpected as your husband was not the one with the family history of cancer. I called your husband later that day to give him the results of your son’s scans (negative for recurrence and negative for new tumors) and to ask about his health. He told me of the weight loss and abdominal pain. He went to the same community hospital where you had gone and had scans that showed a mass in the colon. He told me he was about to be discharged and insisted on keeping your son’s clinic appointment with me the following week as he wanted his son’s g-tube checked. At the time, it seemed strange tome that he was hyper-focused on the g-tube instead of focusing on his own health, but in retrospect, I think the g-tube was something he could control during a chaotic time. 

I saw your two boys and your husband in the clinic the following week. I was shocked to see how your husband looked compared with our last visit 6 months ago. He was in a wheelchair, had lost a significant amount of weight, and looked like he had aged 10 years. 

He told me how his son, my patient, continued to do well. He was worried the g-tube was irritating him more. We ended up exchanging the size as he had outgrown the previous one. Then, he told me about his health, that the biopsy results were still pending, and that he understood the mass was localized. He shared how the preliminary diagnosis of cancer was disclosed to him: the doctor came in the room and abruptly said it was cancer in front of your older son without a warning. My heart broke when I heard this. Your older son lost you to cancer less than a year ago, saw his brother undergo treatment for two separate cancers, and saw his cousin lose his fight to cancer. He didn’t deserve this. I held back tears, and I apologized for the fact that his family had to experience this poor disclosure. I worried about the care he was receiving at the community hospital, knowing cancer is the leading cause of death for Latinos in the United States and that social determinants of health have a role in this.3 I knew the odds were stacked against him. I reminded him that he has rights, including having an interpreter when talking to the medical team.

Then, he said something that took me by surprise, “I need to get my affairs in order.” I felt this was premature and also felt helpless as I desperately wanted to help your family. I told him he didn’t know all the information yet, and if the cancer is localized, then the chance of cure is higher. He nodded his head. I asked if we could provide assistance in any way, such as coverage for transportation, but he declined this offer. At the end of the visit, he said “Muchas gracias doctora.” At home, I cried for your family and questioned how one family could be so unlucky.

I called your husband on a weekly basis for the next 2 weeks to check on him. I then went on service and was too busy to call, but the following week, I got an e-mail from the oncology psychologist stating your son and your husband missed a telehealth visit, adding no one answered the phone when she called. I replied that I had not spoken to your husband in over a week. A couple of days later, I got a call from your son’s social worker, one of the Spanish interpreters had found out via Facebook that your husband had died. Almost a year after you died. I cried.

I went to your husband’s funeral. I cried for your boys who lost both parents in the span of a year. It was comforting to see that you had a lot of friends in the community who cared about your family. It was also comforting to hear that your cousin agreed to take in the boys.

Gabriela, you and your husband did a phenomenal job raising your boys especially with the two cancer diagnoses of your younger son. Your son, my patient, was always happy in clinic, and that spoke volumes to the type of environment you created for him at home. Despite the complexity of navigating a large academic medical center, you did it with such poise. You were an extraordinary mother. 

Was it fate that our lives became intertwined so early in my fellowship training? Latino physicians in general are underrepresented in medicine,4 and the same is true for Latino oncologists in academic medicine.5 So, it was an honor and privilege for me to be your son’s doctora. Throughout our encounters, I thought about how I would want my own extended family to be treated by their medical team, and I did my best to communicate, educate, and advocate for your son and your family. Your family reminded me of barriers low-income, immigrant, Spanish-speaking families face as they navigate the

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Jenny Ruiz, Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine. In this episode, we will be discussing her Art of Oncology article "Buenos Dias: A Letter to My Patient's Mother." 

At the time of this recording, our guest has no disclosures. 

Jenny, welcome to our podcast and thank you for joining us.

Dr. Jenny Ruiz: Thank you so much for having me here. It's truly a privilege.

Dr. Lidia Schapira: It's our pleasure. So, Jenny, I like to start by asking our authors what it is that they're reading now. 

Dr. Jenny Ruiz: Yeah. So I'm currently reading Lean In by Sheryl Sandberg as I'm new to a transition to a new institution.

Dr. Lidia Schapira: Doesn't sound like a lot of fun, but I hope that it's useful. 

So let's talk a little bit about your work. What made you choose a career in pediatric oncology?

Dr. Jenny Ruiz: I think my decision to go into medicine has stemmed from my extended family's interaction with the medical field. At the age of 18, I decided to be premed because I had an encounter with my grandfather, taking him to his clinic appointments after his kidney transplant and being asked by the doctor to interpret for him. I was at that time 17 or 18, and I thought it was a very interesting question that they were asking me. I didn't really think my grandfather would be telling me, his granddaughter, all his personal medical symptoms to then tell the doctor. 

Dr. Lidia Schapira: It's a huge responsibility that's often, I’m going to say, inflicted on children, and especially in this case, with your grandfather. You talk very candidly and openly about being in a family where there was a genetic susceptibility to disease other than cancer and your solidarity with your patient and their family for being an immigrant community and having this. Tell us a little bit about the years that you lived with the story. You cared for this child for many years before sharing the story so openly. Tell us about that. 

Dr. Jenny Ruiz: Yeah. I met this family my first year in the first month of my fellowship four years ago. At the beginning, he was doing so well. I mean, it was unfortunate he had a second diagnosis of cancer, but he did exceptionally well in the outpatient setting, really not having any admissions for all of that. And it was just beautiful to have that relationship with the parents, being able to speak the same language, being able to understand the culture, and seeing them kind of go through this all over again and seeing a little boy grow up. 

And it wasn't really until the last two years that a lot of the incidents that I describe in the story started happening. And so it definitely was a lot to kind of process it with the family as they themselves were going through all the trauma of having the parents diagnosed with cancer. And I think it definitely did take me a while to even after all of that, to put it down in the story and writing it down. I found myself oftentimes kind of writing a little part of the story and having to pause because of all the emotions coming back. And so I think I did that a couple of times across the country, across the world, honestly, little paragraphs here and there.

Dr. Lidia Schapira: That's so interesting. Assuming, maybe reading into this, that telling the story, writing the story, helped you process something that was very personal, very challenging. Can we talk a little bit about this issue of language? You said that you've seen this look of relief on patients' faces when they realize that you speak Spanish and that you can communicate with them, Spanish in this case being the language that binds you to the patient. Tell us a little bit about that, how you view language and speaking the same language as your patient and their family.

Dr. Jenny Ruiz: Yeah, I think we often take for granted that we're able to communicate with our doctors, our medical team, in our primary language. And it's very easy to overlook that there's a lot of immigrants in this country who don't have that luxury of being able to speak to their medical team in their preferred language. So I think one of the main drivers for me to go into medicine is to be able to connect with these families who speak Spanish, knowing that Spanish is my first language, and be able to really communicate in a plain language and explain it to them in a way that they understand and for it to be much easier to then see if they truly understand and check for understanding. I think in pediatric oncology especially, it's a very stressful time to be told that your child might have cancer and to be able to have that conversation in your preferred language, I think takes a lot of that stress away.

Dr. Lidia Schapira: You talk about the fact that patients often feel relief and that it's easier to build rapport and trust, but I think there is something else that perhaps I read into or I wanted to read into it, which was warmth. I think that it's easier to convey that warmth or to understand each other a little bit better when there's concordance in language. So do you find yourself being assigned more of the Spanish speaking families as a result of your ability to communicate?

 Dr. Jenny Ruiz: I didn't really get that sense in fellowship. I mean, I think at one point they were asking for a volunteer from the fellows who needed to pick up another patient, and it just happened that the family spoke Spanish. I was like, “Of course!” I have found it very interesting in fellowship when I would be on call for some reason, every time or quite a few times that I was on call, it'd be a Spanish speaking family in the ED. And I loved going to talk to them. I might not be giving the best news to them, but the fact that somehow our timelines aligned and they would be in the ED, and I would be on call, and I would be that first physician to kind of talk about cancer with them. 

Dr. Lidia Schapira: That's such a beautiful sentiment that you express there. And I wonder if you can tell us or teach us a little bit about how you feel when you work with an interpreter for a language or a culture that you don't understand. Just something that happens to all of us in a society that hopefully welcomes immigrant families.

Dr. Jenny Ruiz: Yeah, I mean, I think there's definitely a lot of skills to be taught in how to work with an interpreter. Again, using simple short sentences, positioning yourself as you are talking to the family, there's not going to be this three-way thing, trying to make that connection as much as possible. I think also noticing the unspoken words and the subtleties of the parent's face, the mom or the dad is very important, even with an interpreter, be like, oh, I noticed this. Is there something that you want to discuss more that made you do this? 

Dr. Lidia Schapira: And even using an opportunity to debrief with interpreters to make sure that we got it right. In your case in pediatric oncology, I think communication is even more complicated because you have the parent and the child and the interpreter. So tell us a little bit about your experience working with families where kids maybe speak English much better than the parents. You still need to communicate with the parents. I think that adds more challenges.

Dr. Jenny Ruiz: Last year when I was a first year attending, I actually prepped a fellow with a talk with a Spanish speaking family with an interpreter. But the teenager's English was his primary language, so yes, he knew Spanish too, and the family wanted him to be involved in this discussion. So definitely a lot of more nuances there, a lot more emotions to be aware of, subtleties to be aware of, nonverbal communication that's happening. But I think honestly, we rely a lot on the parents to guide us in terms of: Do we want the child to be involved? How much information? Do we want to then say it differently for them at a later time or include them from the beginning? It's a lot of talking to the family and making sure that we are meeting their needs.

Dr. Lidia Schapira: So what I'm picking up from our conversation is that you seem to be very tuned into the emotional part of the work. Let me ask this question, and that is: How do you take care of your emotions in these situations where there's so much at stake?

Dr. Jenny Ruiz: Yeah, I mean, I think it definitely can be a very emotional career and certain instances can make it even more emotional and stressful. For me, it's been very important to have a very strong support system. I have my husband, I have my extended friends who are in the Northeast, have become another family for me. And I think, honestly, you know, prioritizing your mental health, whether that's doing your hobbies, whether that's going to therapy, have all been very important for me in this career. 

Dr. Lidia Schapira: I am delighted to hear you say that you are taking time for yourself and looking for things outside of work. That said, let me turn back to the relationship you developed that you describe here with Gabriela, the mother of your patient to whom the letter is addressed. You talk a lot about feeling strongly when you felt there were injustices or when they didn't have the proper access. Tell us a little bit about what that relationship was like and what it's been like for you when you find yourself advocating for families.

Dr. Jenny Ruiz: Yeah, I think these strong feelings stem from seeing my family go through these same struggles and wanting the medical system to do better for immigrant families so they can have the best outcomes. I think oftentimes I find myself realizing I'm getting emotional or worked up and be like, okay, there's something going on here. I need to step back before I start talking to someone else about this, of what I want to happen or what I need to advocate for and really knowing that people will respond better if I stay calm and also kind of push back and in a professional way, ask questions, like, why is this happening? And if this is not our standard, why are we deviating from our standards?

Dr. Lidia Schapira: So I know this is an early moment in your career. I mean, you're an assistant professor and just in the second year of a new job. But how do you imagine that this interest and this advocacy that you're so good at and feel so strongly about is going to impact your career going forward? 

Dr. Jenny Ruiz: I hope to continue to be a role model for trainees and faculty as I progress in my career, maybe I'll take on some leadership roles within the med school education system.

Dr. Lidia Schapira: As you imagine yourself teaching, leading, and modeling behaviors, what are the most important messages that you'd like to convey to your students or peers?

Dr. Jenny Ruiz: In pediatrics, at least ask the parents. Ask the family what language do they want to be communicated in for the medical information of their child? And then if it's not a language that you have been certified in to speak in, or are a fluent language native speaker, then get that interpreter. And then again the plain language and the short sentences.

Dr. Lidia Schapira: So the health literacy and language preference for you are sort of intertwined, so to speak. So I'm curious, does your institution routinely collect that information, and do you ask every patient their language preference?

Dr. Jenny Ruiz: I think there's definitely lots of room for improvement on how that information is being collected. I don't think it's being done in a systematic way. And hospitals are so large, everyone's doing it in different ways. When I was a fellow, I would be called from the emergency, say for cancer. I would always ask the emergency team, “Do they speak English, or am I going to need an interpreter for this?” And it's sad to say, to share that at one point they told me that the family spoke English and it went down there and then they're like, actually, no, English is not the primary language of them all. But we haven't been using an interpreter and I'm like, what is going on?

Dr. Lidia Schapira: Yeah, I think that unfortunately, we've all been witnesses to such moments and it's sort of time for our culture to get this right. 

As we get towards the end of this lovely chat, let me ask if you've shared some of this with your family and how your role, perhaps as the early interpreter for your grandfather has evolved over these years in terms of your being at this position of being an expert now in medicine and perhaps a facilitator.

Dr. Jenny Ruiz: Yeah, I definitely have taken on a role with my siblings and my cousins, kind of telling them the things I see in medicine and telling them why it's important to go to your annual checkup to get those screening tests because too often we see too many people just die too early, when it could have been prevented or a medication could have started early. So I think I've definitely taken on that role within my extended family. I hope that they kind of trust me and that little trust can then slowly build into a trust with their own medical team.

Dr. Lidia Schapira: And if I may just dig a little bit more into this story, my last question is what did it feel like to go to the funeral for your patient's dad?

Dr. Jenny Ruiz: I never thought that I would be going to a funeral for a parent. I thought I was going to be going for the child with the field that I had chosen. So it was definitely unusual. I had a couple of family members also pass away during my fellowship years, so it was a lot of reflection of the things that my family went through, things I saw with this family, a lot of similarities. So it's definitely been a very unique story that I felt like I needed to get down on a paper and share because oftentimes we don't hear these stories.

Dr. Lidia Schapira: It was definitely a message that needed to come out. And we are so grateful to you for writing it, as you say, in little snippets in different times of your life from different locations. Thank you for that and thank you very much for agreeing to chat with me today.

Dr. Jenny Ruiz: Thank you.

Dr. Lidia Schapira: And to our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

Show Notes

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Guest Bio: 

Dr. Jenny Ruiz is an Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine.

Listen to ASCO’s Journal of Clinical Oncology essay, “Playing by Eye: Using Music as a Parallel to Clinical Oncology,” by Dr. Beatrice Preti, Adjunct Professor at Western University in London, Ontario, in Canada. The essay is followed by an interview with Preti and host Dr. Lidia Schapira. Preti discusses the parallels in playing music by ear and clinical oncology encounters.

TRANSCRIPT

Narrator: Playing by Eye: Using Music as a Parallel to Clinical Oncology, by Beatrice Preti, MD 

The Yamaha keyboard in our cancer center is strategically placed. It rests in the center of the tall, lofty atrium, an open space that allows sound to travel and echo, creating an effect one might expect from a concert hall or a large-capacity theater. From their position, keyboard players cannot fully appreciate the music they create. In the middle of the atrium, any sound is flat, shallow, and short-lived. But, further away, and on the upper levels of the center, one can hear the music echo as the walls seem to vibrate with reflected sound. It is enough to pause one’s step to listen, perhaps recalling some half-buried memory or latent emotion a song elicits.

But on center stage, beneath the streetlamp-shaped light that feels all too much like a spotlight, the pressure is on. The keyboard faces half of the waiting room and the lobby Tim Horton’s, which means, as one plays, one can see reactions to the music—including winces when fingers slip! Faces turn solemn and reflective during slower songs; patients, relatives, and health care workers alike dance and clap to faster-paced, popular tunes. Feedback and commentary are steady—about the music, the song choices, and, of course, song requests.

I find song requests challenging; a combination of performance anxiety and only moderate competence on the keyboard affects the quality of the music that can be produced on demand, yet does nothing to eliminate the desire to fulfill a patient’s request. Indeed, the request is usually the simplest part:

Do you know Bette Middler’s “The Rose”?

A simple tune, one of my mother’s favorites. But I haven’t played it in years, since high school, actually, and the once-familiar notes now elude me.

But the empty space after a request lingers awkwardly, and the hopeful anticipation from the patient and their family squeezes my heart like a vise. To break the pressure, I test out a few chords. Dozens of pairs of eyes stare down at me from all over the building. My hands start to seize. To freeze.

Panicking, I hit a note. Seems okay.

Then another one. And a chord.

…that was supposed to be a chord.

The eyes pin me down. I see disappointment. I hear whispers. They must be about me, that it’s not as good as it sounded before, that I could do with some practice. I try again. Better. Another note. A broken chord. An octave. A melody emerges. Someone smiles. I think. Sweat soaks my shirt. Are we at the chorus yet?  How much longer is there left in this song?

Singing starts somewhere to my right, also a little out of tune, and it gives me the courage to continue on, although the experience is nerve-wracking enough to make me dread song requests—despite the apparent joy they bring.

The solution, once considered, seems simple: practice playing by ear. It is impossible to predict who might be walking by on any particular day, but having the skills to reply to a request with at least a few bars of a beloved tune, thus brightening a face (and a day!), seems well worth the effort. Playing by ear, like most learnt skills, is more manageable when broken down into steps. 

The first step (or requirement, really) is a general familiarity with the song and a plan for how to approach it (fast or slow? Block chords or broken? Major or minor key?). Once this is determined, one begins with the first verse. The first time is usually rocky, and the mistakes are obvious. But, with luck, a familiar melody starts to emerge by the chorus.

The music grows louder with confidence, and gauging audience reactions helps musicians see how close they are to the target tune and where they need to adjust. Playing by ear—or, perhaps, playing by eye, as it is the reactions which truly guide the musician—is an amazing skill, one which interestingly spills into more domains than initially anticipated. After several ear-practice sessions, I noticed a strange pattern in my clinics—the steps of a clinic encounter mirrored playing a song by ear! Prior to each encounter, I would consider the diagnosis and treatment plan, as well as a vague approach of how to handle the encounter, given the goal of the visit and the patient’s journey thus far. Once inside the room, however, I began to alter this plan based on the patient’s (and family’s) responses, taking cues both verbally and nonverbally.

Sometimes my words, tone, or gestures fell flat, and redirection was needed. Sometimes an unexpected reaction told me I’d just made a mistake, and I backtracked, trying again, paying closer attention to the reactions to ensure the second try was better. But, gradually, we (usually!) reached a steady state and manage to complete the visit on a strong note.

Naturally, then, the next step would be to practice clinical encounters using these same steps, trying to take my clinical skills to the next level. Unlike a song, however, a clinic visit’s stakes are higher—especially in the high-emotion field of oncology—and striking even a single mistimed chord could lead to disaster.

I start small: awareness, noticing reactions I didn’t before. There’s the fullness in an eye before tears fall, the pallor of a clenched fists’ knuckles, the subtle tremor of a shaking leg. I learn to call them out by name, ask about them: grief, frustration, fear. 

There is a pause, an empty space after such a direct question. A wide-eyed stare. My heart pounds, awaiting the verdict. Was my diagnosis correct? A misjudgment breaks rapport, but accuracy is rewarded with surprise, and opening up. Even family members look surprised, as details are elicited that weren’t before. There is no singing along—cancer is not a beloved showtune. But as my skills grow, I find that not only are patients and families less tense during encounters—but I am, as well. I develop faith in my skills to read the room and alter  my direction based on what I see. And, perhaps, the biggest clue that one has succeeded—on both fronts—is the heartfelt thank you that follows the encounter. 

This parallel has made me realize that every interaction between two people, just like every song, has its own beat. Its own melody. Is this fast or slow? Calm or anxious? Is this a happy exchange, or a sad one? The dynamics of the encounter influence the melody, and a misstep or misplaced word, like a note, can lead to dissonance. However, by listening to the song of the encounter and adjusting as appropriate, an astute individual can actually improve the interaction, maximizing the potential of the encounter, and allowing for a strong conclusion to the visit. It isn’t easy work, to be sure, and, sometimes, the impact of the song can be hard to appreciate, especially within the confines of a four-walled clinic room. However, like the keyboard music in the atrium, the echoes resulting from one clinic encounter have the potential to reach far-reaching corners, echoing in ways previously unimagined, and lingering far longer than when the song ends.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Beatrice Preti, Adjunct Professor at Western University in London, Ontario, in Canada. In this episode, we will be discussing her Art of Oncology article, “Playing by Eye: Using Music as a Parallel to Clinical Oncology.” 

At the time of this recording, our guest has no disclosures. 

Beatrice, welcome to our podcast, and thank you for joining us.

Dr. Beatrice Preti: Thank you, Lidia. It's a pleasure to be here.

Dr. Lidia Schapira: So I usually start by asking our authors to tell me what they're reading, but in your case, I'd love to ask you a little bit about perhaps what you're listening to or your favorite musical pieces.

Dr. Beatrice Preti: Yes, absolutely. Well, I do love music. I play three instruments myself, so I have several YouTube playlists that, as I hear a song, I'll add different ones to. So one of them is retro tunes, like '80s, '70s hits that I know mostly from my parents. And then I have Broadway hits, musical hits because I love musicals and singing. And then I have a random one that has a lot of Taylor Swift, much to the chagrin of my colleagues because I will play that in the cancer center, not around patients, but my colleagues. 

Dr. Lidia Schapira: That's lovely. Well, I think Taylor Swift is a global phenomenon, is all I can tell you. Has music always been a part of your life?

Dr. Beatrice Preti: Yes, very much so. I think- I started piano lessons formally when I was seven. Then I taught myself guitar as a teenager. And then once I hit medical residency, actually, my treat to myself was to start teaching myself violin. And I had the opportunity to take some lessons for a few years as well, which was absolutely lovely. But growing up, my mother loves music as well. She was a Sarah Brightman fan, a British singer. And we used to have her playing and my mother would sing. So I know all of Sarah Brightman's songs from the time I was a very early child, trying to pick those out on the piano as a young child as well.

Dr. Lidia Schapira: So let's talk a little bit about how you bring that wonderful part of your life into your work as a physician and as an oncologist. Do you ever sing with or to patients? Do you talk about your love of music? Do you play music during your consultations? I'm curious all of a sudden.

Dr. Beatrice Preti: Yes, absolutely. So I guess one way that I do bring it in is I have a little violin pin that I wear on the lapel of my white coat. It's a conversation point with many patients because the way I approach oncology is really to try to bring in a human aspect and get to know patients, get to know what they like, who's at home with them, what are their lives like outside the cancer center. And oftentimes people who are musically inclined will point to it, and it's a conversation starter, which can actually be quite relevant when we're talking about treatment decisions and such. And then I have the opportunity as well to play and go down in a cancer center. And, yeah, patients will sing and I will sing along with them as well.

Dr. Lidia Schapira: So you speak of this with so much joy. Tell me a little bit about this piano that I imagine from your description, located in the center of a large atrium in a cancer center, and people just walk by and informally connect with you and they ask you to play, when do you play and how long do you play? When did it start?

Dr. Beatrice Preti: When I started off in oncology, I was extremely shy. I still am. And one of my mentors, a cellist, who plays the cello found out about my musical inclinations and said, "Well, we need to get a piano in the cancer center lobby. Essentially, I can get Beatrice down there and start getting her more comfortable in front of groups, in front of people, in front of patients." That really, I think, was the rationale, but maybe on paper it's more to have something nice for the patients to listen to. And he actually got a piano donated or, sorry, an electric keyboard donated to the cancer center. We did have a piano a number of years ago, but unfortunately it was too loud with the acoustics of the center, so we needed something with volume control. There's actually a lot of keyboard, a lot of black keyboard that's down there now.  

And the first time I played was probably two, two and a half years ago now with my mentor, with the cello. I was very, very nervous. All these people were staring at you and all these people were looking at you. And I actually had a bit of a meltdown just before I thought, "Well, I can't do this. There's no way I can do this." But he coached me through it and it was the first of many things that he coached me through related to oncology, relating to overcoming your fears to try to help other people. And that's really how that started. And eventually I got brave enough to go down and play on my own and chat with the people down there.

Dr. Lidia Schapira: That's a beautiful story, both of service and of mentorship. And to see both of these things come together. As you say, your mentor probably had two things in mind: helping the community of patients that you serve and also helping you build confidence, as you say. So talk a little bit about this confidence and this lovely metaphor, in a way. You talk about finding the right tempo or finding the right music to play to please somebody or to help them relax, bring them joy. And then you draw some parallels to how you use communication in the consultation room, taking your cues from people and knowing perhaps when to slow down or when to change the tone or the voice. Talk a little bit about that. It's fascinating to me.

Dr. Beatrice Preti: Well, I think one of the things I struggle with in oncology, and I certainly know I'm not the only one, is that sometimes you feel very helpless. Because we do have wonderful drugs, we have wonderful therapies, I'm a medical oncologist, so drug therapies, but they don't always work. And sometimes, despite your best efforts, despite the best that medicine has to offer, you feel very helpless, and the outcome is not what you or the patient wants. So trying to find something that you can offer and that you can give, that's more than just a treatment or more than just a drug, that's essentially giving of yourself, what can I, as a person, offer to a patient? And I guess superficially, the music itself is something that you can offer. To give people even just a few moments where they can escape the cancer center and they can listen to something. And when I'm down there, I'll play a lot of these tunes and these kinds of things, where maybe it triggers a memory that somebody might have of a time and place that's quite different than the one they’re in right now. But also, it helps evoke that human aspect that I think we touched earlier.

And as you say, Lidia, and as I say in my piece, about trying to match the tempo, trying to match the rhythm, because conversations also have tempos and rhythms. Human interactions have variations and they have moods. And it's also practice in a way. If you can connect to someone through music, perhaps you can connect to your words as well. Perhaps you can connect with your actions as well. Much the same sort of strategy.

Dr. Lidia Schapira: And you bring up a very important point, I think, and that's to play, as you say, you start by saying ‘by ear’, maybe no, but by eye because basically you're also taking in the visual cues that are coming from your audience. In this particular case, it's you're playing in the lobby, but in a consultation room from the patient and family and everybody who is there, and being very quick to take that into account and to redirect or make a change. And when you talk about that in the music, it's so easy to understand. And when you talk about that in the consultation room, that's such a skill. That's sort of where the art and the skill seem to go together. Can you say a little bit more about that or share with us some time or some anecdote where that really worked for you?

Dr. Beatrice Preti: Honestly, I think the first thing that comes to mind is times when it didn't work. Sometimes, especially as a more junior learner, you only realize that the patient encounter isn't going well when it's really not going well. You really miss those early cues that a patient is telling you. That they're in distress, that they're not happy with what they're hearing. And it was, again with the same mentor observing me through several patient encounters and really deciphering it, saying, “Well, this is where– What did you think when they said this? And did you notice this look?” And no, I didn't notice this look. Well, he did, and maybe you can pay more attention. 

And I think it was actually when I was playing music that I really started to make those connections because down there, I'm playing by eye. I'm trying to watch this patient or this person - half the time, I don't know who they are - to see am I playing the tune that they want, and is it recognizable enough? Does it sound okay? Is it transporting them to that place where they're hoping to be and then bringing that into the clinic room and saying, “Okay, this is actually working. I can look at this person and I can figure out how this is going and try and adjust or redirect to really try and make this encounter the most valuable it can be for them and help them get out from what they need to get out .”

Dr. Lidia Schapira: So Beatrice, what I'm hearing is an enormous sense of commitment to your patients. It's absolutely lovely. But I wonder if I can ask you a little bit about the flip side of that, and that is to reflect a little on perhaps how playing and sharing music reduces your stress or increases your sense of being well and being yourself and being more confident. Can you talk a little bit about that? 

Dr. Beatrice Preti: The bottom line is that when a patient encounter goes well, you also feel better because if it's not going well and people are upset, you will also be upset. So, again, very superficially, that's a good end goal to have.

Dr. Lidia Schapira: That's right. 

Dr. Beatrice Preti: Music itself is very relaxing for me. Maybe when you're a small child and you have to play the exam pieces or you have to play what the teacher says, or what your parents say, it's not quite as much fun trying to learn everything. But now I'm at the point where if I hear a song or I see a song, I'd like to play the song, I can just do it. So it's very lovely that way. Of course, I have all my instruments at home, so even if there's a song that perhaps is not cancer center appropriate, I can just play it at home. I hope the neighbors don't complain and it's fine, but it's really fantastic, especially singing. So being able to sing with two of my instruments at least, I don't know. I'm sure there's violinists who sing. I'm not one of them. I don't have those skills. But with the other two, just go down into the basement. I have a microphone, I have a sound system and just get it all out. Get out all your frustrations, all the things that happened that day. It's very cathartic. It's a good release 

Dr. Lidia Schapira: Over the years, we've had a few essays in Art of Oncology that talk about music and how important music is for that particular author. And it's just so lovely to hear. So I want to end by asking you a very simple question, and that is, what is the song that is most often requested these days?

Dr. Beatrice Preti: Oh, that's hard. That's hard. It really depends who it is, because I've played to different generations. I have a rendition of “Zombie” by The Cranberries that a lot of people seem to like, “Losing My Religion.” But these days it's “Flowers” by Miley Cyrus, actually, I would say. Everybody seems to know that song.

Dr. Lidia Schapira: Well, it makes me feel very old because I don't. I was hoping you would say something about these ‘70s or I'll be more comfortable with ‘80s or even with Taylor Swift, but I'll have to go listen now. So thank you. I want to give you the last word in the podcast. What is the central theme of your message as an author and as somebody who's sort of bringing this forward and putting this in front of the global community of oncologists, what can music give us?

Dr. Beatrice Preti: Yes. Well, I think music and writing and words, which are a form of music in a way, they can help us remember, I think, the most important thing about Oncology, which is the human aspect of it. We're dealing with people who are frustrated, scared, alone, lost, in some of the darkest points in their lives. And it's a privilege to be able to serve and help these people through their journeys, but that's not always with drugs and treatments. Sometimes that's just with what we do or what we say, and that's a gift. But it's also a skill that needs to be developed and remembered. And having music is one of the things I think that helps me do that. 

Dr. Lidia Schapira: That's absolutely beautiful. So thank you very much for the work you do and for sending us your essay. And to our listeners, until next time, thank you for listening to JCO Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

Show Notes:

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Guest Bio: 

Dr. Beatrice Preti is an Adjunct Professor at Western University in London, Ontario, in Canada.

Listen to ASCO’s Journal of Clinical Oncology essay, “When the Future Is Not Now,” by Janet Retseck, Assistant Professor of Medicine at the Medical College of Wisconsin. The essay is followed by an interview with Retseck and host Dr. Lidia Schapira. Drawing on cultural history, Retseck explores a dying cancer patient’s persistent optimism.

TRANSCRIPT

Narrator: When the Future Is Not Now, by Janet Retseck, MD, PhD 

 The most optimistic patient I have ever met died a few years ago of lung cancer. From the beginning, Mr L was confident that he would do well, enthusiastically telling me, “I’ll do great!” As chemoradiation for his stage III lung cancer commenced, he did do well. Until he got COVID.

And then reacted to the chemotherapy. And then was admitted with pneumonia. And then c. difficile diarrhea. And then c. diff again. But whenever we checked in with him, he reported, “I’m doing great!” He could not wait to return to treatment, informing me, “We’re going to lick this, Doc!” Of course I asked him if he wanted to know prognosis, and of course he said no, because he was going to do great. He trusted that his radiation oncologist and I would be giving him the absolute best treatment for his cancer, and we did. In the end, weak and worn out and in pain, with cancer in his lungs and lymph nodes and liver and even growing through his skin, he knew he was not doing great. But he remained thankful, because we had done our best for him. Our best just wasn’t enough.

While it can overlap with hope, optimism involves a general expectation of a good future, whereas hope is a specific desire or wish for a positive outcome. Research has shown that for patients with cancer, maintaining optimism or hope can lead to better quality of life.1,2 As an oncologist, I am in favor of anything that helps my patients live longer and better, but sometimes I also wonder if there is any real cause for optimism, because the odds of living at all with advanced cancer are just so bad. From 2013 to 2019, the 5-year relative survival rate for people with stage III lung cancer was 28%. For stage IV disease, it was just 7%.3 Immunotherapy and targeted treatments have improved outcomes somewhat, but the chances for most patients of living more than a couple of years after being diagnosed remain low. Even with our best treatments, there seems to be more reason for despair than optimism. Yet here was my patient and his persistent optimism, his faith in treatment to give him a good future, and my hope that he was right, even when I knew he was probably wrong. What drives this belief in a good future, a better future, in the face of such a rotten present? Optimism as a word and a philosophy emerged in the 18th century in the work of German thinker Gottfried Wilhelm Leibniz. As it was for my patient, optimism served as a way to negotiate the problem of human suffering.

 Attempting to explain how a perfect, omniscient, and loving God could allow so much suffering, imperfection, and evil, Leibniz argued that God has already considered all possibilities and that this world is the best of all possible worlds. Leibniz did not mean that this world is some sort of a utopia; rather, the God-given freedom to choose to do good or evil, and even our vulnerable aging bodies, are good in themselves.4 If my patient were Leibniz, his optimism about his cancer could be explained by an acceptance that everything happens for a reason, his suffering somehow part of a larger whole, selected by God as the best possible way to the greatest good. 

But while Mr L did take his diagnosis and various complications in stride, a belief that it was all for the best did not seem to be at the core of his optimism. Nor, in the end, did he reject his optimism, as the French philosopher Voltaire would have him do. Voltaire famously skewered Leibniz’s optimism in his 1759 novel Candide, in which Candide, having been raised on Leibniz’ philosophy, is kicked out into the cold, cruel world, where not just he, but everyone around him, suffers horribly and unremittingly, such that at one point, he cries, “If this is the best of all possible worlds, what must the others be like?”

Whatever Voltaire’s satire in favor of empirical knowledge and reason did to Leibniz’s philosophy, it did not kill optimism itself. Scientific optimism, in the form of progressivism, the idea that science and our future could only get better and better, flourished in the nineteenth century. Certainly, life for many did improve with scientific advancements in everything from medicine to telephones to airplanes. With this brightness, though, came a deepening shadow, a tension heightened by the experience of chemical warfare and shellshock in World War I.

Instead of better living through chemistry, science provided the means for horrifically more efficient death. The assimilation of science to the service of evil soon culminated in the vile spread of eugenics, racism, and mass murder. Like Candide, pretty much everyone in the 21st century must be wondering if we do not live in the worst of all possible worlds. And yet, when it came down to it, what else could my patient hold onto if not optimism that science would save his life? As I continued to reflect on Mr L’s response to his illness, I realized that I had unconsciously already stumbled on Mr L’s type of optimism, or rather its popular culture archetype.

One day, when he was getting his chemotherapy in an isolation room due to his recent COVID infection, I passed by the glass window. I waved, and he waved back. Then, I put my hand up to the glass, fingers separated in the Vulcan salute. He laughed, and waved again. The scene, for non-Star Trek fans, is from the movie The Wrath of Khan. The Vulcan, Spock, too is in glass-walled isolation, dying of radiation poisoning, after having sacrificed himself to save the ship and its crew. He and Captain Kirk connect through the glass with the Vulcan salute, as Spock tells his friend, “Live long, and prosper.” Later, Mr L told me that he had never been able to do the Vulcan salute and that he was not especially a Star Trek fan, though he had watched it years ago with his kids. But he loved this private joke we had, flashing this sign to me whenever we met, laughing when he could not make his fingers part properly.

Star Trek epitomizes optimism for the future, arising as it did in the context of the Space Race to the Moon. Set in the 23rd century, Star Trek reveals that humans have finally learned the error of their ways: nuclear warfare, racism, and poverty are all things of the past, as are most diseases, ameliorated by the advance of science. In the world of Star Trek, medicine is, if not easy, then at least almost always successful. In one episode, the ship’s doctor, McCoy, and Spock whip up an antidote to a deadly aging virus. Later, slung back to 1980s San Francisco in Star Trek: Voyage Home, McCoy, aghast at “medieval” 20th-century medicine, gives an elderly woman on dialysis a pill that allows her to grow a new kidney. In the world of Star Trek, cancer, of course, has been cured long ago. My patient’s optimism is realized here, in a future that regards 20th-century science as “hardly far ahead of stone knives and bear skins,” as Spock complains in another episode. Star Trek remains popular because, in spite of everything, there endures a deep desire for, if not the best, then at least a better possible world.

I’m an oncologist, not a Vulcan, and when it became clear that Mr L was not going to “live long and prosper,” I was frustrated and disappointed. His optimism could no longer sustain my hope. We were not in the idealized world of Star Trek, and I could not heal him with science and technology. Whatever the future of medicine might hold, our best possible treatments were still just “stone knives and bearskins.” Optimism, whether his, mine, or that of science, would not save him. The only optimism that seemed warranted was not for the future, but in the future.

At the family meeting to discuss hospice, Mr L sat in a wheelchair, weak and thin, on oxygen, wrapped in a warm blanket. As his family slowly came to realize that their time with him and all that he was to them—father, husband, bedrock—was moving into the past, he seemed to shift from a focus on the future to the reality of now. Gathering his strength, he dismissed their concerns about what his loss would mean to them with a sweep of his arm. Tearful, but not despairing, he instructed his children to support their mother and each other after he was gone. At the end, Mr L’s optimism became not about his future, but theirs. His wish was for them to embrace living their own best lives as they entered this new, not better, future, a future without him.

A few days later, I visited him in his hospital room while he was waiting to go home with hospice care. He was dozing in the bed, and I hated to wake him. Then he opened his eyes and smiled. We chatted for a bit, but he tired easily. As I prepared to leave, I tried to give him the Vulcan salute one last time. He shook his head and opened his arms. “Give me a hug!” he said. And I did.

I would like to thank Mr L’s family and the Moving Pens writing group at the Medical College of Wisconsin for their invaluable support.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. With me today is Dr. Janet Retseck, Assistant Professor of Medicine at the Medical College of Wisconsin and the author of “When the Future is Not Now.” 

Dr. Retseck has no disclosures.  

Welcome to the show, Janet. 

Dr. Janet Retseck: Well, thank you. Thank you for inviting me.

Dr. Lidia Schapira: It's our pleasure to have you on. I like to start the conversation by asking authors what is on their night table or if they have a good recommendation for our listeners and colleagues. 

Dr. Janet Retseck: Well, I usually read three books at a time—one book of short stories, one book of nonfiction, and one novel. And right now I'm reading Elizabeth Hand's book of short stories, Last Summer at Mars Hill. I am reading Dr. Rachel Remens' Kitchen Table Wisdom because I work with The Healer's Art, and I found this book misplaced, and I thought, "Oh, my, I should read that." And I'm reading a novel called The Donut Legion by Joe Landsdale. And I bought this because I liked the title, and I am very hopeful that it involves a group of people using donuts to fight evil.

 Dr. Lidia Schapira: How interesting. I look forward to listening and hearing more about that.  

Let me start by asking a little bit about your motivation for writing this essay. I mean, we often write to process difficult experiences, and then what leads many authors to want to share it and publish it is that there is a message or that something was particularly impactful. And I was struck by the fact that you start by sharing with us that you took care of Mr. L, the patient, and the story some time ago, several years ago. So what about Mr. L sort of left a deep impression with you, and if there is one, what is the message and what drove you to write this story?

Dr. Janet Retseck: Mr. L and I connected right away when he came to my clinic. At that time, he did have a curable lung cancer, but everything that could go wrong did go wrong. Yet he had a dispositional optimism. He always told us, no matter what was going on, "I'm doing great,” just like that. When he died, I had a lot of grief around that. And at that time, I thought I would perhaps write about that grief and whether I had any right to that grief. And so I opened up a software that allows mind mapping, and I just looked at it last night in preparation for this interview. And on one side, it has all the things that I cared about and connected with Mr. L, and on the other, there's this bright purple line going with big letters "Do Better." 

Then I reflected again on our connection with the Vulcan “Live long and prosper,” and how ironic it was that that's what one of our connections was. And yet he was not living long and prospering, and nothing about that over-the-top optimism of Star Trek had happened at all with all the medicine that I was able to give him. And that's where it came together. 

Dr. Lidia Schapira: Let's talk a little bit about that Vulcan salute. My digging around a little bit led me to understand that it was Leonard Nimoy who introduced that and that it's really a representation of a Hebrew letter, Shin. So how did you and Mr. L come up with a Vulcan salute? What did it mean to you? It's very moving how you tell us about it and what it symbolized. And so I just want to give you a chance to tell our listeners a little bit more about that.

Dr. Janet Retseck: Well, there was a point during his chemoradiation when Mr. L developed the COVID infection, and radiation oncology wanted to continue with radiation, and he wanted to continue with chemotherapy. And everything we knew at the time, we felt it would be safe to do so because it's a pretty low dose. It's just radio-sensitizing. But anyone getting chemotherapy in our infusion center had to be in an isolation room. And this has a glass window. And I was walking past, and I saw him in there, and I kind of goofed around with him. The scene from the movie Wrath of Khan came to me, where Spock is in an isolation room, and Kirk connects with him through the glass. Spock is dying, and Kirk doesn't want him to die, and they give the Vulcan salute to each other through the glass. And of course, he couldn't quite do it. He knew what I was doing. He watched Star Trek in the past, but he wasn't especially a fan. But after that, that was our thing. Whenever he came in, he was trying, he was struggling to push his fingers apart. That was one of the ways we just connected with each other, to signal our affection for each other.

Dr. Lidia Schapira: There is a lot of affection here. When I finished reading it, I read it several times, but I just thought the word "love" came to mind. There's so much love we feel for patients. We often don't quite say the word because we have these weird associations with love as something that's forbidden, but that's what this feels like, and that's the origin for our grief. I mean, we've really lost a loved one here as well. Mr. L sounds incredibly special, even in that last scene where he wants his family to imagine a future without him. So tell us a little bit about your reflections from what you've learned from and with Mr. L about how people who have really no future to live think about their own future and sort of their presence or their memory for those who love them.

Dr. Janet Retseck: That's a very complicated question. For Mr. L. I think he was certain he was going to do well, that with all everything that we would be giving him, that he would survive and spend more time with his family and that's what he held onto. And I don't know that it was sort of delusional hope. We get every brand of acceptance and denial as oncologists. We have people coming in with their magic mushrooms, their vitamins, their vitamin C infusions. We have people going down to Mexico for their special secret treatments that have been withheld by pharmaceutical companies. We have people denying altogether that they are sick, coming in with fungating masses. But Mr. L was very different from that. His disposition was "Everything is good and it's going to be good, and I trust you 100%," and that's a big responsibility— is to take the patient's trust and to try to deliver on that. And in some way, my grief when he died was I could not do that in a lot of the ways the medicine world is at now. We break our patients' trust.

Dr. Lidia Schapira: That's an interesting way of looking at it, and I sort of would push back a little bit on that.

Dr. Janet Retseck: As you should.  

Dr. Lidia Schapira: Good. I'm trying to do my job here and say that you shared that you both were disappointed by the limitations of what current medicine can offer, and that's I think where you sort of spin your sort of philosophical and very beautiful reflection on the future. It is my understanding that that's where the title of this piece also comes, that you and Mr. L sort of could bond over his optimism and over the sort of futuristic view that medicine can fix anything until you couldn't. And then you both sort of adapted, adjusted, accepted, and again bonded in a very different way through the bonds of affection and support in presence. So I would not want your readers to think that your heart is broken because you disappointed him because you couldn't cure him, but that your heart is broken, if it was, because you had such affection and respect for him. 

I agree with you that he seemed to be well served by his optimism and it was working for him until it wasn't anymore. And I wonder if you could talk a little bit more about how you think about that optimism and hope and acceptance.

Dr. Janet Retseck: Well, I should come clean and say I'm an optimist myself. I have to be, as an oncologist. Here we are starting at the very beginning with a patient, a curable intent, or is palliative intent, and we are giving these very harsh drugs, and I am optimistic I am going to do good rather than hurt the patient. And I tell them that right up front, this is what we hope will happen. Optimism really subtends to everything that I do, as well as an oncologist. So I don't mean to say we shouldn't hope, we should not be optimistic about what we can do now, but there's also that tension with the desire to do better always for our patients.

Dr. Lidia Schapira: Janet, I was struck by your sort of teaching us about the origin of the word optimism. So, say a little bit more about what led you to go back to thinking about what the word actually means and how your patient illustrated this for you.

 Dr. Janet Retseck: Thank you for asking that. It was actually serendipitous because I had settled on the Star Trek motif for thinking about my relationship with Mr. L and Star Trek with all of its optimism about the future, and it just fits so well with Mr. L's disposition. And I thought I need to differentiate that from hope or wishful thinking or magical thinking because it is something very different. So I went to the handy dictionary and looked up optimism, and right there the first definition: optimism is a philosophy developed by Leibniz regarding the best of all possible worlds. In other words, this is the world that is the best possible one of all the possibilities, even with all the suffering and the evil and the pain that we have to deal with. And so I thought, well, maybe I'll learn a little bit more about this Leibniz. I'd heard the phrase ‘best of all possible worlds’ before.  

I did a little research and I found this wonderful article that I cite in my paper that described Leibniz and his optimistic science. And I thought, well, this is a real way in to thinking about Mr. L and putting into a larger context of optimism versus hope and optimism and its focus on the future. And really that idea of, not that everything that's happening to him is for the best, but it's the best. He got the best, and he very thoroughly believed that he was getting the best treatment, and he was. But my point was that even though it was the best, it wasn't enough yet. So where is that ‘enough’ located? And I think it is located in the future, but it's a future we can continue to hope for, and a future I think will come to pass someday. Someday we will not need to be oncologists, just like there don't need to be doctors who treat tuberculosis anymore.

Dr. Lidia Schapira: So when my son was very little and he heard me very optimistically also talk about new treatments and so on, he said to me, “Mummy, the day that there's no more cancer, what are you going to do?” If somebody asked you the same question? What do you imagine yourself doing other than being an oncologist?

Dr. Janet Retseck: Well, I guess I would go back to being an English professor.

Dr. Lidia Schapira: Tell us more about that. 

Dr. Janet Retseck: Now, I have let the cat out of the bag. So that little Ph.D. next to my name, I've decided to embrace that - that is in English. And as many people may know, the job market in English is not fantastic. And I've always had a bent toward science and medicine. And when I discovered that it was possible to go back and get my sciences, in part through sheer memorization, I decided to do that. Because what better way to spend ten years of my life than learning how to be a physician?

Dr. Lidia Schapira: So in the last minute of the podcast, tell us a little bit about your Ph.D. What is your area of interest, and have you taught? Are you planning to go back to teaching or are you currently teaching?

Dr. Janet Retseck: My Ph.D. is more or less in Victorian novel and interpretation, and I taught for 16 or 17 years, mostly community college, some at the Claremont Colleges, mostly composition, and I am teaching right now. This is what I love, being at the Medical College of Wisconsin. It is like I hit a home run coming here because they have a very strong medical humanities program. And when I arrived here, I was directly pointed to the directors of the medical humanities, “Look, here's a Ph.D. in English!” And I thought, “You mean I can do something with this here in medicine?” And so I connected with Bruce Campbell and Art Derse, who were instrumental in bringing narrative medicine to the Medical College of Wisconsin. So I'll be teaching a class of that in narrative medicine in the spring, and I do everything I can to teach the medical students and residents and fellows here at the Medical College of Wisconsin as a VA.

 Dr. Lidia Schapira: Well, that was quite a surprise for me. I didn't know that. I knew, reading your essay, that it was beautifully written. Thank you. I was going to ask what your Ph.D. was in, expecting you to tell me something about some branch of science I know nothing about. But this came as a surprise. So I am so glad that you're doing what you're doing. I'm sure your patients and your future students really appreciate it and will appreciate it. So thank you so much, Janet. 

And until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO shows at asco.org/podcast. 

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experiences, and conclusions; guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. 

Show Notes: 

Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio: 

Dr. Janet Retseck is an Assistant Professor of Medicine at the Medical College of Wisconsin.

Listen to ASCO’s Journal of Clinical Oncology essay, ““Why Me?”, a Question of Opportunity,” by Simon Wein, head of Palliative Care Service at the Davidoff Cancer Centre. The essay is followed by an interview with Wein and host Dr. Lidia Schapira. Wein considers if patients are able to make rational decisions about their health when they are able to accept the reality of illness.

TRANSCRIPT 

Narrator: “Why Me?”, a Question of Opportunity, by Simon Wein, MD 

“Why me?”

A question is an opportunity. It is also an invitation and a revelation.

A question by its nature reveals something about the asker. When a patient or family member asks the doctor a question, the challenge for the doctor is to follow up the question diagnostically, then therapeutically, be the therapy medication, or talking. Some questions appear mechanical, such as “Will I be able to drive again?” while others are more obviously self reflective, such as “Why did I get sick?” However, even the most mechanically minded question may be fraught with emotional significance.

A recent Art of Oncology poem entitled “Questions for the Oncologist” listed a litany of questions the doctor encouraged his patient to ask. All, except one: “But please, don’t ask me that one thing./Don’t ask, ‘why me?’/You wouldn’t like the answer. I don’t.” Later, the doctor-poet provided the answer: “Bad luck is a second-rate explanation, I know.” The poem was sensitively, empathically, and thoughtfully written, apparently recalling an emotionally intense case. The poem reminded me of a patient I looked after some time ago and of a mentor past.

An obese 60-year-old man came in. He was miserable and in pain. Ten months after definitive surgery and radiotherapy for lung cancer, the disease had returned with pain in his right chest wall. While awaiting full biopsy results, we irradiated the lesion and started nonsteroidal analgesics and duloxetine for the neuropathic pain (with the hope it might also improve his mood). Within 3 weeks, the pain had been significantly relieved although his misery was unchanged. We talked. He had been divorced for many years, worked in hi-tech, lived alone, and had lost contact with his two adult children. His parents had migrated in middle age, and he was an only child born in a new country. His parents struggled, and the family dynamic could be described as sullen. The family did little together and was silent a lot of the time. He recalls his parents, especially his father, as emotionally distant, involved in their own lives. Growing up he spent a lot of time alone. At university, he studied engineering and married his first girlfriend; however, the marriage fell apart as, in his words, “I did not know how to live together with someone else.” In his sullen home life, he had not acquired the skills of building a family nor had he developed a coherent world view.

Despite good pain relief, his sense of brooding and demoralized loneliness persisted. Underneath was a seething anger. He kept asking “why me?” I assumed at first that he was referring to the cancer. He was, but not only. I consulted with a mentor, and he said he often answered that question with: “Why not you?” I tried it.

The patient was flummoxed. It pushed him to reflect. With further probing, over time, his thinking changed from a closed loop of “Why me,” to “What is life asking of me?” And further afield he reflected on his childhood, his failed marriage, and estrangement from his children.

Why did this happen to me? He shook off some of his depressed mood as he began to piece together his life’s trajectory. In an insightful moment of acceptance he noted: “Indeed, why not me … What makes me special that I should not have the disease?” Sadly, there was no fairy-tale ending. He died alone.

When a patient asks a difficult question such as “Why me?” or “How long have I got doc?” the psychologically astute analysis is, “Why and what does the patient want to know?” and “Why now?”

Responding with the question “Why not you?” may sound harsh, even confrontational. “Why not you?” is designed to be challenging to shift the locus and focus of thinking from a passive and often ineffectual cry, “Why me?” Nevertheless might such a response appear insensitive and lacking empathy?

Over the years, I have learnt that practically any question can be asked of a patient so long as it is asked for the sake of the patient, in an appropriate manner and in the right circumstance. In short, the questions must be empathic. Wiseman suggested the empathic response has four characteristics: to see the world as others see it, to be nonjudgmental, to understand another person’s feelings, and to communicate your understanding of that person’s feelings.

Avoiding difficult and embarrassing questions may provide short-term relief but possibly sets the stage for later unresolved angst. I recently did a sabbatical in palliative care in Australia, a fair distance from the Middle East both physically and culturally. The openness and tempo of

questions asked of patients and family in Australia might be considered brusque (or confrontational) and hope depriving in the Middle East. Although the influence of culture is pervasive, it is the individual who needs our help and who ultimately determines the conversation. Sometimes the individual is not open to talking therapy. It is an important communication skill to know when not to probe.

“Why me” is both a deeply philosophical and a naive question. “Why me” addresses the question of justice and seeks an explanation on the assumption that ours is a rational world. However if a person thinks the world is inherently random, then such a question is naive and without intellectual value since everything is bad luck, like a random genetic mutation.

“Why me” can be a profound philosophical question as the doctor-poet implied when he concluded: “Search for a better answer within, as I have. Unsuccessfully, so far.”1 The “answer within” bypasses the issue of whether it is a meaningless world or a god-driven world. The “answer within” locates the responsibility within ourselves to try to make sense of what is happening with my life. An answer within suggests a philosophy that we can make sense and meaning of my life, despite the world’s apparent carelessness or bad luck.

Alternatively many people, especially here in the Middle East, hold a theological belief, and the question “Why me?” is resolved within the theology of their religious beliefs. The believers are, in a way, lucky.

Patients who ask the existential question “Why me?” can be challenged to reflect on themselves. “Why not you?” is a probing question that, with skill and some luck, may enable a measure of acceptance: “Indeed, why not me” (Fig 1).

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Simon Wein, head of Palliative Care Service at the Davidoff Cancer Centre in Petah Tikva, Israel. In this episode, we will be discussing his Art of Oncology article, "Why Me? A Question of Opportunity." 

At the time of this recording, our guest has no disclosures. 

Simon, welcome to our podcast and thank you for joining us.

Dr. Simon Wein: Thank you very much, Lidia. It's a pleasure to be speaking with you.

Dr. Lidia Schapira: It is our pleasure as well. I'd like to start this conversation by asking our contributing authors to tell us what they're currently reading or if they have a book they've just read they want to recommend to colleagues and listeners.

Dr. Simon Wein: So I recently picked up and reread The Count of Monte Cristo by Alexandre Dumas. I don't know if you've read it. It's a very long production because in those days they used to have a weekly chapter, weekly several chapters, and they didn't have WhatsApp and television and cinemas. And it's very long, but it's a wonderful read. I enjoyed it very much. The other book I'm reading now, more slowly, is The Nature of Natural History by Marston Bates. He is an American zoologist, and it's a wonderful read about his overall view of life, animals and plants, and I'm enjoying it very much. I have a great interest in gardening, and I think his views are very interesting.

Dr. Lidia Schapira: That's wonderful. So let's turn now to your essay, "Why Me?" This essay starts as a conversation with an author who has published a prior work, a prose poem of sorts, in Art of Oncology. Tell us what it was about that read that sort of triggered you to want to respond and then clearly elaborate into what's turned into a beautiful manuscript.

Dr. Simon Wein: I think what really grabbed me was the sensitivity of the oncologist as he was writing it, and the pain, it's a little bit strong, that word, but the difficulty he had in dealing with this fear that the patient would ask him, "Why me?" He wrote it so beautifully with such empathic sensitivity, that it really grabbed me, that question, "Why me?" that he was scared of. And it recalled for me, my mentor from many, many years ago, Dr. Wally Moon. And I remember as clear as yesterday, he'd say, "Patient asked me the question, 'Why me?' I'd ask him back, 'Why not me?'" So that's what it triggered off for me reading that essay, those two things.

Dr. Lidia Schapira: Simon, you also make an interesting point that I want the listeners also to think about, and that is that a cultural context influences whether or not we feel comfortable even asking these questions, right? And you contrast your experience in a recent setting in Australia with your typical practice in Israel and the Middle East. Can you talk a little bit about that?

Dr. Simon Wein: The older I get in this profession, the more I'm impressed by the importance of culture and yet how much we have to honor the individual and that ongoing tension between those two points of the compass. And I was brought up in Australia and sort of rather Anglo-Saxon and reserved in that way, and in Australia much less likely, in a sense, to be forthcoming and outgoing in what we want to say. And in Israel, people are much more open. And yet when we come to the consulting room in Israel as in other parts of the Middle East, indeed in Eastern Europe, a lot of the literature has demonstrated that we don't want to tell the truth straight out directly. 

And in Australia, on the other hand, even though it's a reserved society, people are straight out in the consulting room. Bang. They'll say, "This is the prognosis and this is what it is." So I've developed this model for my own thinking, is that in the West, the individual is the final moral arbiter of deciding ethical behavior, whereas in the Middle East it's more the family or, in a broader context, the culture. And so in Israel, you're much more likely to speak with the family, involve the family, or they'll come in and ask you not to say this to Grandma, and you have to make up your mind where the individual stands and where the cultural family influences. But from my point of view, I still think that the individual has to be honored and respected ultimately in the final decision.

Dr. Lidia Schapira: Simon, I want to also ask a little bit about your style and your communication style with patients. You are so clear in your descriptions to address not only physical pain but emotional pain and suffering and misery, as you call it. How do you sit with a patient and try to draw them out in a way that is empathetic and respectful, but also to help them understand that you actually care?

Dr. Simon Wein: I'll take you back to another mentor I had. That was Bill Breitbart at Memorial. I did a two-year fellowship in psychiatry psych-oncology there many years ago. As I said, I came from Australia. I was rather green in psychological terms, and I used to do rounds with Bill. And I remember this one patient I had with Bill, and it was a middle-aged man. He was a working blue-collar man. And Bill went up to him, we were asked to see him for depression, and Bill went up to him and started talking with him, and within 30 seconds he'd started asking about the tattoos on his arms. And I thought, wow, that's fairly personal to get into that. You only just met the bloke and you're already talking about that. 

And of course, from that I learned and with other experiences, that you can ask any patient any question so long as three conditions are fulfilled, and this is what I teach to the residents. The first condition is that it has to be at the right time. Sometimes you have to ask the patient privately and you ask the patient, the family, then to leave. It has to be the right you can't ask questions like this in the corridor, so the timing has to be right. The second thing, and this is I learned a lot from Bill and from my previous mentor, Wally Moon, you have to ask it in the right way. You have to ask with the right intonation. You could have said to that guy with the tattoos, "Wow, look at those tats. I mean, where did you get them from?" You know, that might have then made him shirk a little bit and stand back. Or you could have said, "Hello, Mr. Jones, goodness gracious, look at those tattoos you've got. They look very interesting. Do you mind telling me about them?" And so the way you ask. But I think the third condition for asking any question to any patient is that it has to be for the sake of the patient. It's not for me, it's not for anybody else. It has to be that in some way, this question will benefit the patient. The patient will respect that, they'll see that. 

And so I remember once I wanted to go and take a photograph of this guy who had these enormous hemangioma tumors on his leg. And I went in and I felt uncomfortable. And I realized the reason I felt uncomfortable was I was taking these photographs for myself, not for his sake. Eventually, I spoke to him and he agreed. He was agreeable for education and so forth. But I think those three conditions, the right time, asking it in the right way, in an empathic way, that's a key word, empathic or sensitive or charming or pleasant way. And for the third condition, for the sake of the patient, and I think that's really, really critical in being able to ask a patient any question.

Dr. Lidia Schapira: That is such a thoughtful, beautiful answer. And I'm going to switch to another topic just because I want to pick your brain and I'm curious to know how you would handle this. And that is, I know you do palliative care and you've clearly trained in the psychological aspect of serious illness, but do you think, wearing your palliative care hat, that cancer is special and that cancer patients are a special population when they ask, "Why me?"

Dr. Simon Wein: That’s a really good question, isn’t it? In our hospital now, I started off in palliative care about 15 years ago. For the first 10 years, we only did cancer patients. I’m an oncologist by training. But now we’re opening up to non-cancer patients. I think that in society there’s little doubt that the myth of cancer being the same as a death sentence is very strong. There are many patients with advanced New York Heart Association IV heart failure whose prognosis that is much worse than many of our cancer patients. But cancer has gotten this flavor of death, of Damocles’ Sword hanging over your head and that’s that, and it raises- immediately goes to all the existential questions of meaninglessness and emptiness and death and fear and loneliness and all that, much more than these other ones. And it’s not true. Cancer patients today may live much much longer than we once knew and much longer than many other non-cancer patients. So I think there is something very special about that. 

And cancer has got this other horrific aspect about it which is that the body is eating itself up. Your own cells have turned against you. And I think psychologically, emotionally– Well, auto-immune diseases are not dissimilar in the sense of the body turning against itself. But cancer, it’s a sense of the cells dividing and coming on and eating you up. It’s got that mythical aspect to it. 

Dr. Lidia Schapira: And if I may add one more thing, in my mind, it’s also that cancer treatment is so grueling and awful and sometimes actually exacerbates the suffering. So I think that it’s cancer and the fear of consequences and exposure to cancer treatments, would you agree?

Dr. Simon Wein: A lot of our patients come to us, but they won’t say to the oncologist how tough the treatment has been. They don’t want to sort of feel weak in front of the oncologist they don’t want to give up on that chance of getting out of the cancer. Because if they say that to the oncologist, the oncologist might say, “Oh, you don’t want to miss this chance, but you’re not good. But maybe we take a break from the cancer treatment.” But many of them are absolutely exhausted. Absolutely exhausted. 

And then the other aspect of that, not just the fear of the oncologist, but also with the family. The family are egging them on, and I often say to the family, “Listen, guys. Mom is very, very tired. You haven’t got the treatment. You’re young, you’re well, you don’t feel sick, you want to fight.” The patient doesn't want to disappoint the family. The family don’t want to disappoint mom. Nobody talks to each other and they have this dance of the macabre where nobody’s talking to each other and the patient just keeps getting this treatment. I mean that’s one of the things why I think it’s worth confronting patients with the question, “Why not you?” If only to have some sense of acceptance of what it is.

Now often in palliative care oncology, when you say acceptance, it means “Right, I accept I am going to die.” But I don’t see it like that. I think if you have a measure of acceptance, then it will enable you to make more rational decisions about your cancer care. I mean how rational can you be in deciding about the cancer? We don’t know. The oncologist gives you 30%. Well, how can you interpret 30%? I don’t know. So the rationality is limited. But if you’re understanding of what’s going on, I think it helps you make more rational- to have treatment and continue or not. So I think that’s why it’s a useful thing to try and do that. But some patients don't want to, and I just don’t push it. And many is the time that I’ve said to a patient, “You know, this is very bad. You’ve got cancer.” It’s like they come back next week, “How’s my virus going?” It’s like ‘It’ll just pass and that’s it,” and so you realize that and you just continue on. 

Dr. Lidia Schapira: And so my last question to you, Simon, is this: as an oncologist, as a palliative care physician, as an expert in communication and psycho-oncology, what do you say to your oncology colleagues who have trouble responding to the question that patients frequently ask, ‘Why me?’

Dr. Simon Wein: Lidia, it's a good question because not often do I get a chance to speak to oncologists in this way. We're often kept out of the room, and when the decisions are made, it's very difficult to backtrack a decision about treatment. Very difficult. One, because you can destroy any trust that the patient will have built up in the system, and two, it's not really collegial then afterward to go and undermine. And so that's why I write lots of articles on these subjects, Lidia, and I hope that the oncologists will read them and I hope that they get published. I distribute them at work and sometimes the young ones will come and say, “You know, that's quite good.” What we're trying to do, what I think is very, very important, is to have the multidisciplinary meeting. We're trying to develop that now. 

When I was in Australia, Peter Mac, we used to have them. And I think it's by a process of diffusion, by repeating the messages, the philosophy, the idea that we should ask the patient, get a picture from the patient of what's going on. Do they really want it? What's going on? What's important to them in life? Maybe they're satisfied with their lives. And then to have the balance between the side effects and the challenge of the treatment. The other thing that really gets me, got me on a bit of a hobby horse now, Lidia, is how much time in the last three months of their life patients spend on the road, coming to the hospital, doing blood tests, going home, another PET CT, another scan, and those are the last percentage of their life. It's substantial. So more and more we're actually doing telemedicine, as I'm sure you are. And at first, I was a bit skeptical about that, being an old-fashioned physician, where I think you should talk, touch them, see them, but you actually save a lot of their time and a lot of their difficulty and so forth. I think that's very good.

Dr. Lidia Schapira: Yeah, both for us and for our patients, time is the greatest gift, right? And if we begin to think about it in those terms, time saved, time freed from hanging on to a test result, or needing to go and get another scan, can be an enormous gift for them as well.

Dr. Simon Wein: Or an opportunity to live and enjoy life. And I say to every patient that every day you've got to find something to make yourself happy. I had this one patient the other day, the oncologist was mad. This poor guy's got a metastatic disease, his liver is not as good as it might be, and he was desperate to have a smoke of a cigar and a whiskey. And the oncologist said, “No, you can't do that because it could interact with your chemotherapy.” And so I broke my rule and I said, “Look, the oncologist doesn't really know what he's talking about,” and the guy promised to bring me in a cigar, which I haven't yet got. But anyway, I thought that was very sweet of him. 

Now I just like to say one more thing. If we're talking about therapeutic relationships, I think that the best lesson I ever learned and heard was from Irvin Yalom, from his book Existential Psychotherapy. And it's like 40 years since he wrote it, and a lot of paper has been printed, articles have been printed since then. But he really was very good. He said we have to relate to the patient like ourselves. We've got the same existential problems that the patient has, you know, empathy and all that, but we've got the same problems. Theirs are a little bit more contracted in time. And what I like to do with my patients is relate to them in an authentic, real way, a genuine way, and they'll learn from that relationship how to live their lives when they go home. And I thought that was a really, really beautiful thing. And so he's got a quote there, which I love to share. And it's that “The relationship with the patient is that which heals.” It's the relationship that heals. And I think we shouldn't underestimate, and I think we do sometimes, the importance of the interaction and the relationship between the patient and the doctor.

Dr. Lidia Schapira: It's a lovely way to end our conversation. Dr. Yalom is a colleague here at Stanford. He's in his 90s now, and he recently widowed. So that's a lovely thought and a wonderful teacher and mentor.

So thank you, and until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. 

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes: 

Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio: 

Dr. Simon Wein is head of Palliative Care Service at the Davidoff Cancer Centre in Petah Tikva, Israel.

Additional Reading and Podcast

Questions for the Oncologist, by Barry Meisenberg

Podcast Interview with Drs Meisenberg and Schapira on Questions for the Oncologist.

Listen to ASCO’s Journal of Clinical Oncology essay, “But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care,” by David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. The essay is followed by an interview with Mintzer and host Dr. Lidia Schapira. Mintzer stresses the need for oncologists to make an effort to maintain relationships with patients as cancer care becomes more fragmented.

TRANSCRIPT 

Narrator: But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care, by David M. Mintzer, MD (10.1200/JCO.23.00805)

For the past 7 years, I have cared for Michael, a man with pseudomyxoma peritonei. He has undergone two aggressive surgical resections with hyperthermic intraperitoneal chemotherapy and endured multiple chemotherapy regimens, all of which resulted in questionable benefit.

Recently, his health has declined due to progression of his cancer, and he has had frequent admissions for infectious complications, obstructive symptoms, and several fistulae. I had always been his attending on previous admissions unless I was away, but when I last saw him, he asked me why I had not been his doctor this time. Even before he asked, I felt guilty for not being there for him. 

For most of my career, I would see my own inpatients on a daily basis, rounding before, and sometimes after office hours. Currently, owing to system changes that likely have evolved with most practices and hospitals, only one of us sees inpatients on the teaching service, with the rest being off service. This happened long ago for our obstetrical, primary care, and other subspecialty colleagues, but for as long as possible, I held onto the belief that in oncology, we and our patient relationships were different.

While most of the kerfuffle over the past few years in medicine relates to the electronic medical record and its effect on our lives and on physician-patient interactions, I think the fragmentation of care—while less frequently acknowledged—has been as relentless and impactful though more insidious. While most published articles on fragmentation define it as patients receiving care at more than one hospital, my focus is on the fragmentation of care within our own practices and institutions.

Our patients are at their sickest and most frightened, thus most in need of us, when they are hospitalized. But now, instead of providing care with a consistent presence, patients are regularly passed back and forth from the outpatient to inpatient teams, then sometimes to the palliative care team, and then perhaps to a hospice team or, for those with the best outcome, transitioned to a survivorship team. While all these practitioners are kind and competent, they are not a constant.

 When I am covering our inpatient service, I do not know the detailed medical history of the majority of patients who have been cared for by my colleagues. Can I seriously be expected to know their complex oncologic and other medical issues, let alone their psychosocial needs, in any appropriate depth when I walk in on a Monday to start the week covering 16 new patients? 

I can be empathetic and do my best to communicate with their outpatient physician, but both emotionally and medically, it is never the same as being cared for by someone one has known and trusted throughout one’s disease trajectory.

Our relationship with the house staff is also fragmenting. We used to spend a month at a time as teaching attending, giving us a chance to get to know our students, interns, and residents. This has now been reduced to a week, and with our house staff rotating on an every 2 week schedule, we may work with a resident or intern for just a couple of days before one of us rotates off service. Furthermore, they spend much of teaching rounds staring into their smart phones and computer screens feverishly trying to complete their electronic workload.

 As practices have become larger and medical teams more complex, care has become less personal and often less efficient. If the patient calls with an issue or sends a message, it is notclear to them, and often to us, who will be assuming responsibility for their concern. Should it be directed to my administrative assistant, our triage nurse, the nurse navigator, the palliative care nurse, my nurse practitioner, an off-site call center nurse, or myself? The inbox proliferates; the toss-up for ownership of the message begins; six people now read what used to be handled by one or two. 

While I was an initial enthusiast for the early integration of palliative care alongside primary cancer care, I now also fear that it has further removed us from some of our most important interactions and deepest responsibilities. The inpatient oncologist used to be the one to provide symptomatic and supportive care and run the family meetings. Our house staff now routinely consults palliative care for even the simplest pain management issues, and we increasingly outsource goals of care and other serious discussions to our palliative care teams, who do not have a longstanding relationship with the patient or their family nor a complete understanding of their disease trajectory and past and future treatment options. Nor do I if it is not my patient and I am just the covering attending of the week. Too often it seems that palliative care has replaced us in some of the roles that used to be integral to our practice as oncologists, and we seem to have eagerly stepped back from some of these responsibilities.

Our interactions with our colleagues have also fragmented. Mostly gone are the days when we would sit down in the hospital cafeteria with other physicians from other specialties for coffee or for lunch after grand rounds. And the days when we would review films with our radiologists or slides with our pathologists are mostly long gone. Our tumor boards provide some interaction, but since the pandemic, these tend to be virtual and less intimate. I mourn the loss of our sense of a hospital community.

There have been some definite benefits to the fragmentation of care, which is why it has evolved and why we have accepted the bargain. As we increasingly subspecialize, we can get better and more focused on what we do which helps us cope with the explosion of data and new information across every area in our discipline. Some of us can devote more quality time to research, and it has also made our professional lives easier in some ways. How nice not to have to trek to the hospital to see very sick inpatients every day, but rather just a few weeks a year. How much easier to have someone else take charge of difficult end-of-life discussions.

There is no point in bemoaning the loss of the old ways of more personalized care, as there is no going back. The current generations of physicians will not feel this loss of inpatient/outpatient continuity having grown up in an already changed environment, just as they will never have known a world before the electronic medical record. Patients have also accepted our absence from their bedside with less resistance than I would have expected, perhaps knowing from the rest of their care experience how depersonalized it has become—not that they have had much say in the matter.

The changes in the delivery of health care will likely accelerate as we enter the medical metaverse and how we will navigate artificial intelligence while maintaining our emotional intelligence remains to be seen. The continued emphasis on increased efficiency and throughput of physician efforts—structuring medicine as a fragmented assembly line—runs counter to what is so meaningful to the physician-patient relationship—a function of time spent developing personal connections.

As we continue our efforts to keep up to date with the rapid expansion of medical knowledge in our field, we also need to make equivalent efforts to maintain our personal and emotional connections with patients. As we have less frequent direct contact due to so much fragmentation of care, we need to make the time we do have with them more impactful. And sometimes that means going over to the hospital to see Michael after a long office day, although you are not on service. It is the right, human thing to do, and still gratifying—for all of us.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lydia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. In this episode, we will be discussing his Art of Oncology article, “‘But Where's My Doctor?’: The Increasing and Relentless Fragmentation of Oncology Care.” 

At the time of this recording, our guest has no disclosures.  

David, welcome to our podcast, and thank you for joining us.

Dr. David Mintzer: Thank you for the invitation, Lidia.

Dr. Lidia Schapira: It's a pleasure to have you. I'd like to start these conversations by asking our authors if they have any books they want to recommend to listeners or if they're currently enjoying anything we should all know about. 

Dr. David Mintzer: Well, I just finished David Sedaris's most recent book, which is a series of essays. I get a big kick out of him. I think I often mesh with his sense of humor and a little bit of cynicism, a lot of truth, but heartfelt and always amusing.

Dr. Lidia Schapira: I love his work. Thank you. That's a great recommendation, especially for the summer. 

So let's dive into your essay and your perspective, which is really such an important topic for us. You talk about the fragmentation of care and how it's impacted our practice, our relationships, and even our joy in the work that we do. Can you talk a little bit about your feelings about this?

Dr. David Mintzer: Certainly. So I've been practicing medical oncology for a long time, about 40 years, so I've seen a lot of change. Favorably, most of that change is certainly in the good sense. We have so much more to offer our patients in terms of therapies that are more numerous, more effective, and less toxic. But there's been a price, I guess, to pay with those changes. We've all become more subspecialized, and the care has increasingly fragmented. And I was stimulated to write this essay because I've been disturbed to some degree by some of the changes. I think they are inevitable. I didn't want to write a piece just about how far I had to walk to school every day, uphill both ways, and complain. But I got a sense that others might have shared these observations and feelings, and I just kind of wanted to get them down. 

Dr. Lidia Schapira: One of the things that you said that really resonated with me is when you talk about patients being at their most vulnerable and at their sickest and most frightened when they're hospitalized, and that's when they need us. And what you say here, what I'm interpreting that you're saying, is that by not showing up at bedside, in a way, we're abandoning them. And that is something that feels terrible to us as well, those of us who really value that presence and that relationship. Can you talk a little bit about how you're dealing with that and how you see your colleagues dealing with that?

Dr. David Mintzer: Well, it's a bit of a Catch-22. Yes. I think a lot of this is driven by guilt, by not being there for patients that we cared for sometimes for many years and know well. And although this happened in university hospitals a long time ago, in our hospital it was relatively recent, that it was recommended in part for house staff accreditation regulations to have only one attending on service at a time, which is understandable so as not to confuse the house staff. 

But in doing so, we're not there for our patients every day. And so you're kind of torn between running over to the hospital after a long day when you're exhausted and seeing your patients and fulfilling what feels like some responsibility, and also feeling that this is no longer my role, this is no longer the way medicine is practiced. It's not efficient. I don't get paid if I go over, someone else is collecting the RVUs. And in addition to that, the concern that the patients may not be getting not just the optimal emotional care, but even the medical issues. Certainly, the doctors covering are good and do their best, but they don't know these patients. They don't know their whole history, they don't know their complications in the past. That's the trade-off we make. 

Dr. Lidia Schapira: Let's talk a little bit about those relationships that we invest in so heavily in oncology. Oncology is different than many other fields and we've always valued the time we spend with patients and forming those relationships. Can you talk a little bit about how you see those relationships threatened when you as the oncologist and the person who's given them guidance for the entire trajectory of their illness can't be present just when they're at their sickest and most vulnerable? 

Dr. David Mintzer: So care of cancer patients certainly takes a village and we have tremendous support with so many different practitioners, including our nurse practitioners, our palliative care nurse practitioners, palliative care attendings, nurse navigators. But as we introduce all of these people, we actually have less direct contact time with patients. We're less likely to be the ones to call them on the phone or even answer their email. And one of the great things about practicing oncology is not just the science and what we can do for patients medically, but these bonds and relationships we form. It's been chipped away at rather insidiously, but I think rather steadily over 20 years.  

Medicine thinks it's so scientific and advanced and technological. But I always kind of reflect that we're probably 20 years behind every other industry, whether it's banking or going to the supermarket or the clothing store or the hardware store. You used to go to your neighborhood pharmacist and you knew him and he would give you advice or your hardware store guy would give you some advice about how to fix something. So those industries lost their personal relationships a long time ago. We're really far behind them, but we're catching up. So now everything is done more remotely, more on the phone, and as I said, there's less direct contact time, which I think we all miss. But we're different. We're different from going to your local banker or grocer or bookstore dealer.  

This is medicine. These are important medical events for patients. They're very emotionally fraught, they're complicated. And so what may be adaptable to other industries, even though it seems to be being forced upon us, is not as adaptable in medicine. Now, maybe there is some respite for this. I saw recent data that telehealth is going down. We thought telehealth was going to be here to stay with COVID and everyone was going to love it. And yet it's interesting, although it may be partly regulatory and partly because of the end of the epidemic, but I get a sense that both physicians and patients are a little bit less interested in it. I think that shows that we might be a little bit different from other industries, but we'll see how that plays out.

Dr. Lidia Schapira: Absolutely. I couldn't agree with you more, but you talk about relationships also with trainees, for instance, that part of this fragmentation and these new schedules that we have also limit the contact you have with the house staff when you are assigned to be the doc on service. Perhaps you don't know all these patients very well, but you also bring up the fact that you don't get to know your trainees very well either because they're coming and going with different schedules. So what I took away was sort of a sense of loss, a bit of a lament that a lot of things are being lost in this super fragmentation. Can you address that a little bit, perhaps for our listeners?

Dr. David Mintzer: Yes, I think that's exactly right. So the fragmentation that I describe is not just in patient care, although that's probably the most important to all of us, but the fragmentation with kind of the extended family that was our hospital community. We've gone now to a nuclear family. So if we're a specialist in one particular area, we still have kind of a nuclear family. But my sense is we've lost that extended family, meeting people in the cafeteria after ground rounds, dealing with other subspecialists. And if you're only in the hospital a few weeks a year, you just have less contact, passing people in the hallway, meeting them at conferences, reviewing films, as I said, with radiologists, reviewing slides with pathologists. We're all too busy, we're all sitting in front of our computers at lunch, we're all doing conferences on the phone, driving home from work, but we have less time with each other. And that holds also true for students and residents who now rotate very quickly.

Dr. Lidia Schapira: Let's talk a little bit about one of the other points that you make in this very thoughtful essay, and that is that you say that you were an early enthusiast of the integration of PalCare, but now you find that certainly, the younger generation seems to be outsourcing symptom management and communication very early to PalCare. And as a result, perhaps from the patient's perspective, care becomes even more fragmented. And that's sort of a bit of a loss all around. We're not able to do some of the things that we enjoy too, in terms of family meetings and communication, but also everybody's becoming more deskilled. Talk a little bit about that.

Dr. David Mintzer: Yes, I was an early enthusiast for palliative care, and I still am an enthusiast, don't get me wrong. You can't criticize palliative care. It's like criticizing mom and apple pie. But the idea was, and still is, of course, that you would work in conjunction with a palliative care specialist, that they would be called in, say, on the very difficult cases, cases that needed particular expertise, or to spend more time. And certainly, that happens, and I have tremendous respect for my palliative care colleagues. But what's happened, as you note, is that we've kind of outsourced it. It's much easier to have someone else have that difficult conversation, particularly if you're just covering a patient that belongs to someone else, you're just seeing them for a few days during the week, you don't feel comfortable in doing so. And so I'm concerned that we've abdicated our responsibility in many of these important discussions and left it to the palliative care team who, by the way, are overwhelmed because there aren't enough of them now that they are getting all these consults for almost everything.  

We should, as oncologists, still be able to run the meetings, to refer patients to hospice, to discuss goals of care. But as we all become more specialized, as we become busier, we have less time and we've built this metaphorical moat between our offices and the hospital, I find that we're just doing it less and less, and I feel some guilt about that and also some loss.

Dr. Lidia Schapira: David, you say in your essay, we have accepted the bargain. What I hear from you today and what I read and inferred in reading the essay when it came to us, is that there are feelings of guilt, there's less joy, there's feelings that somehow this bargain isn't so good for us after all, even though at some level it makes our work a little bit more simple and our hours perhaps a little bit more predictable. So can we think together a little bit about what lies ahead and how we get over this deep ditch that we seem to be in? 

Dr. David Mintzer: Well, as you say, there's both benefit and loss involved with this and it does make our lives easier. If you're seeing relatively healthy outpatients month after month in the office, you get to feel oncology is not so bad and you can kind of put that two-week hospital rotation when everybody's in the ICU and having multiple unfixable problems and poor palliation behind you. So you can almost kind of go into denial. And it does make your quality of life easier to be able to just go to the office and go home most weeks of the year. 

How are we going to deal with this going forward? I mean, we do have to make the effort. I don't think it's going to go back. I don't think writing this article is going to change the way medicine is structured. This is a more efficient way and in some ways, it may be safer and more high reliability, which are kind of the watchwords. So I'm worried. I don't know where it's going. I think it is going to be a little less personal. But my point is we have to be aware of it and in doing so make the time we have with patients more impactful, be a little bit more aware of our need to support them. Maybe if you're not at the hospital every day, go over once or twice a week, or certainly when there's a big change in event. 

Dr. Lidia Schapira: Do you think we could use technology to sort of stay in touch and pay a social visit via FaceTime? Or remain connected to our patients, even if it is in a social function, but somehow, for their sake and for ours, remain connected when they're in hospice when they're hospitalized. But we're not the attending of the month. 

Dr. David Mintzer: Certainly, the way we communicate has changed. I remember being a young attending and I was working at a small community hospital, and one of the surgical attendings would just call their patient on the weekend on the phone, but wouldn't bother to come in. And I thought, my gosh, that's terrible. What kind of impersonal, awful medical care is that? But indeed, now, calling or more likely, texting, communicating, emailing with patients may work. 

What's coming with virtual or augmented reality or whether EPIC can eventually just plant a chip in our brain and we can all be online all the time, I don't know. But yes, any type of communication helps. I've often said that there's nothing like an unsolicited phone call to a patient to encourage them. Just, “Hey, you didn't call me, but I'm calling you. I was thinking about you. How are you doing?” So, yes, staying in touch by whatever means, I think can be greatly beneficial and mean a lot to the patient, even if it's a brief text or phone call.

Dr. Lidia Schapira: Yeah, even encouraging your trainees if you have residents or fellows working with you to go with you to that unsolicited visit or participate in that, I think that sort of would model the kind of behavior that we would want if our loved one is the patient, right? 

Dr. David Mintzer: For sure. 

Dr. Lidia Schapira: And that's always a good question because what we hear from patients is how much they value and love their oncologists when there is a strong connection. So let's perhaps finish the conversation by going back to Michael, your patient. How did you and Michael resolve this?

Dr. David Mintzer: Honestly, we haven't resolved it. So when he's in the hospital, he's now cared for by whoever's on service at the time. Fortunately, he hasn't been in the hospital lately, but I will make an effort to go over and stay in touch with him.

Dr. Lidia Schapira: I'm sure Michael would appreciate your presence.  

Are there any other thoughts that you would like to convey to our listeners or readers? We have dealt with some of these futuristic issues in Art of Oncology before, including one essay I remember was published years ago where there was sort of this very impersonal imagining of what it would be like for an oncology patient to basically be seen by a series of robots along the chain without this human connection. And it was really terrifying to read. So thank you for reminding us about what is lost for us as well as what is lost for patients, something that we all need to go back and revisit, I think, as we think about the future. Any final thoughts, David, for listeners?

Dr. David Mintzer: So as a physician who's getting close to the end of their career, I don't want to come off as just protesting against change. We need change. You know, change is crucial, but I think it's not really been clear to a lot of people how much this has been eroded over time -  that our direct contact and the fragmentation has impacted us and our patients and other caregivers. And this separation between inpatient and outpatient, I think, is becoming steeper. Our palliative care nurses used to go over to the hospital and see the inpatients as well as the outpatients, or our physical therapists, or our nutritionists. Now everyone is divided. I still think it's a great job. I love caring for patients. I love the teams that I work with. And as medicine gets better, though, we just have to be on guard to stay in touch with our patients and our feelings. 

Dr. Lidia Schapira: I really appreciate your perspective. Thank you so much for sharing it with us.  

And until next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO Shows at asco.org/podcasts.

 The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. 

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes: 

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Guest Bio: 

Dr. David Mintzer is a Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. 

Additional Reading: 

Ars Brevis, by Dr. George Sotos

Listen to ASCO’s Journal of Clinical Oncology poem, "Mandatum” by Dr. David Harris, who is an Associate Staff in the Department of Palliative and Supportive Care and Program Director for the Hospice and Palliative Medicine Fellowship at Cleveland Clinic. The poem is followed by an interview with Harris and host Dr. Lidia Schapira. Dr Harris share how his team honors a patient's spirit

TRANSCRIPT

Narrator: Mandatum, by David Harris, MD  

Where does the soul reside

in the darkness of the body?

Does it flicker along the highways of nerves

up the spine

up the neck

to the globe of the skull

or does it pulse, a lightening bug

in the vast caverns of our bellies?

The foot was his answer

his left, to be precise.

The cancer mushrooming from his heel

a small price

for a soul.

We told him

he had a choice:

We would take the foot

or this sarcoma would take

all of him.

But when he chose,

we did not understand.

We told him

a hundred times

in a hundred ways.

We told him

he did not understand

could not understand

so could not choose.

He told us

he once walked

all night through the cold to reach us.

“When I die I want to be

whole.”

The foot

where our flesh greets the earth’s

flesh. Where our weight

collects

builds

presses down.

Where else would a soul

want to be

when we slip

bare feet into sand

letting the cool stream

run over?

We washed and wrapped

the foot in white, clean cloth

then unwrapped it, to wash again.

Washing as the cancer grew.

Washing as the soul flickered.

Each day washing. Choosing

what we could not understand.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I am your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. David Harris, Associate Staff in the Department of Palliative and Supportive Care and Program Director for the Hospice and Palliative Medicine Fellowship at Cleveland Clinic. In this episode, we will be discussing his Art of Oncology poem, “Mandatum.”

At the time of this recording, our guest has no disclosures. 

David, welcome to our podcast and thank you for joining us. 

Dr. David Harris Thank you, Lidia. It's wonderful to be here. 

Dr. Lidia Schapira: Let's start by talking a little bit about your process for writing. You're a published author. We've published one of your beautiful poems in the past. This is, I believe, the second time. So tell us a little bit about when you write, why you write, and when you decide to share your writing with others through publications.

Dr. David Harris: I think my writing starts when I have an experience that feels profound and sticks with me, and there's a certain way that feels in my body. I'll leave a room and I'll say, something happened in there. It didn't just happen to the patient, but something happened to me. It'll be one of those moments, and I think we all have these that we keep coming back to, a patient that we keep coming back to, sometimes even a single sentence that somebody said that we keep coming back to. And over time, I've realized that when I have that feeling, there's some poetry there, if I can sit with it. And I spend a lot of time just sitting and thinking about the story and trying to find what pieces of it are meaningful to me, what images are meaningful. And from there, after a long time just sitting and experiencing and listening to myself, then I begin to write, and the writing piece ends up not taking that long. It's much more of the first piece. 

Dr. Lidia Schapira: And tell me, why did you choose poetry? Or do you write prose and poetry, and we just happen to be talking about poetry?

Dr. David Harris: I find poetry to be so much easier than prose. One of the things I love about poetry is that so much is left unsaid. And the idea of writing something with a plot and with dialogue and character development, that seems like a real task and a real feat. There are so many different types of poetry, and the poetry that I'm interested in writing just describes a moment. That's all it is, just shares a moment that I think other people might also enjoy. And so that seems simple. 

Dr. Lidia Schapira: So, David, help me translate what you just said for our readers. In a way, many people feel that somehow they don't understand poetry, or they're not capable of fully grasping everything the poet maybe intends. Why do you think people have this feeling about poetry, almost, I will compare it here to abstract art? This feeling that somehow you need something else to understand it? Is that real or is that just a perception?

Dr. David Harris: I think that's the real experience for so many people. And maybe a better comparison than art would be music, in that there's pieces of music that I will listen to, and I'll say, I can't understand this, and they might be masterworks of famous composers, but for me, I don't have the ability to access that. And then there are pieces of music that I love, Taylor Swift, that's kind of my speed. And I think that poetry can be like that, too. I think there's poetry that you need training to be able to appreciate and to understand, and then there's poetry where just your human experience is what you need, and you can read it, and whatever it means to you, that's what it means, just like when you listen to a song. The first time I experienced poetry, and I bet this is the case for a lot of the listeners, was in English class, where I got graded on my ability to understand poetry and talk about a way to take the joy out of it is to be evaluated. I guess they probably didn't pick poems that were super easy to understand, because that's not really the point of it. I wonder if a lot of it comes from these experiences we all had in junior high and high school English, reading poetry. I don't think it has to be like that. 

Dr. Lidia Schapira: Good. No, I don't think it has to be like that. So let's talk about your beautiful poem here. What inspired the poem? It sounds like this was an encounter with a patient that really moved you and made you question many of our practices. Tell us a little bit about this person. 

Dr. David Harris: Yes. This was a person who came to our hospital with a mass on his left heel, a fungating, bleeding mass. And the sarcoma team we have here, the surgeons and the medical oncologists, felt quite confident that it was a sarcoma without even biopsying it. Confident enough that they recommended a resection even before biopsy as a curative approach. And when they shared this with the patient, the patient refused the curative surgery. And the reason that he refused is he said that if we amputated part of his body, his soul would be lost through the amputation. And in medicine, we're not used to talking about souls, or at least my team is not, and we didn't really know what to do with this. This person had a longstanding history of severe schizophrenia, and when our psychiatrist came to evaluate him, they did not think that he had capacity to make decisions. And there were no people in his life that could be a surrogate for him. So he was a patient without a surrogate. And there were so many complex issues that this brought up for us. We were in the uncomfortable position of having to make a choice for a patient, and that's not something that we're used to doing in medicine, and I think that's a very good thing. There was this discomfort of making this life or death choice for this patient. How could we do that? How could we take that responsibility?

Dr. Lidia Schapira: So let's think about this a little bit from at least your perspective as a palliative care doctor who was brought in, I assume that was your role here, right?

Dr. David Harris: Yes.

Dr. Lidia Schapira: Perhaps as an ethicist or palliative care consultant to bring it all together. So maybe the way to think about it, or perhaps if I imagine how you thought about it, was the suffering that this imposed for this person who was right in front of you. You couldn't change him. You couldn't change his mental health. You couldn't change his decision. But somehow you approached him as somebody, perhaps, who is a sufferer, who has a big problem. Tell us a little bit about how you and your team aligned yourself with what the patient wanted or the patient expressed, even though you understood that, from medical legal perspectives, he lacked capacity to decide.

Dr. David Harris: We spent a lot of time with him. We spent a lot of time talking as a group. Our bioethics team, in addition to me and many of our palliative docs were all really involved. One of the things that really played into our thought process was that he did not have a temporary lack of capacity. And this desire not to have the amputation was not temporary. This was permanent. And there wouldn't be a day that he woke up and said, “Thank goodness, you didn't listen to me and you did that amputation.” And the other thing we thought a lot about is how much suffering do we give somebody if they feel they've lost their soul, and how do we quantify that? 

Dr. Lidia Schapira: And if we're talking about souls, I can't help but ask you about all of the religious implications here. In your poem, you talk about washing feet. You give the poem a title that evokes a part of a religious liturgy. Can you tell us a little bit about how that theme came into the construction of your poem? 

Dr. David Harris: I think that this will sound a little silly, but as I was sitting here with this story and thinking about it, which is a part of my process in writing, I spent a lot of time thinking about feet because that's where his cancer was. And after we chose to not do the surgery and before he passed away, we spent a lot of time wrapping and unwrapping and washing his feet. And what we chose instead of doing the surgery was- that was what we moved towards. What we chose to do was do wound care and wash his feet. One of the things I think a lot about is the mundane actions that we do as physicians, as medical teams, and how significant and profound they can sometimes be. I think one example that many people have talked about and discussed is the physical exam and how it's not just a way for us to listen to the heart, but it's also this ritual. And for him, when I talked to the nurses who were caring for him, the wound care and the washing of his feet became a ritual. And I saw this parallel with what I learned about the washing of the feet that is done in Catholicism. I am not Catholic myself, and it's not something that I have personal familiarity with, but I feel like there are parallels to what we do as physicians in medical care, caring for the body and what other groups do, caring for other parts of humans. And so I saw that parallel there.

Dr. Lidia Schapira: That's beautiful. Now, can you tell us a little bit about the title? I'm sure it's not something that the readers of the Journal of Clinical Oncology often encounter as a heading for an article.

Dr. David Harris: I know, I was so excited. Poets are famous for having a title that doesn't make any sense. So I think one of the things I hope readers associate when they hear that word that they may not know is the word mandate. And when we think about what we do in healthcare, how does the word mandate come into what we do? And for this case, where we determined he had a lack of capacity, where we chose whether he would have surgery or not, how does that word play into the story? And then, in addition, “Mandatum” as sort of a ceremony of washing the feet, and the significance of that as a spiritual ritual and what we did for him as a medical ritual, and the parallels there.

Dr. Lidia Schapira: David, I wonder if, wearing your educator hat as an educator of fellows, you can talk a little bit about how you bring all of this beautiful and complex philosophy of care, of seeing the whole person, of responding to suffering and reflection, or your reflection through poetry and through the arts, how you bring that to your fellows and how you help them to develop some of these greater techniques for their own enjoyment and for their own development.

Dr. David Harris: That's such a wonderful and thought provoking question and something that I've been thinking about so much this year as our new fellows are joining us. The way I bring it into the room when I'm seeing patients is one of the easiest ways to show them, because we will go see patients together, and they can begin to see how learning about the non-medical pieces of a person can change the whole medical interview and the whole interaction between a physician and a patient. And I think that's something that our fellows leave the year with, and also our oncology fellows, when they rotate with us, they've said that one of the things they leave the rotation with is this appreciation for how all parts of a patient are important in their receiving excellent care. 

The second thing you were asking is, how do I help fellows in their personal journey inward. And for me, that's been a journey through poetry, and I feel like that's something I'm still trying to understand how to do, because each person has their own way in, and I don't know if writing poetry- I will say, I'm sure that not everyone's way in is going to be writing poetry, and it shouldn't have to be. And so how can I invite my fellows inward on this journey? Show them how I do it, show them how other people in my department have done it, and then also not force them because I don't think that's helpful at all.

Dr. Lidia Schapira: Yeah, and it doesn't work. This has been such an important conversation for me, and I'm sure it'll be very impactful for our listeners. So let me end by asking what you and your team learned from caring for this person.

Dr. David Harris: One of the things that I'm really proud of my team for is how much time and how carefully we approached the situation. And it was not comfortable to make choices for somebody else. And I remember we all got together on a call, and every single person, med student, resident, bioethicist, nurse, physician, they all sort of shared their own thought process about what should happen. And every single person on that call had the same opinion about what to do. And I was proud of my team for that process. This thing that none of us really wanted to do, that at least we did it very carefully.

Dr. Lidia Schapira: That's a beautiful reflection and really speaks to good leadership in the team and also the value of teamwork of feeling that you can- that you're safe and that you can express your views. And I imagine it must have been incredibly difficult. But thank you, David, for writing about it, and thank you for sending us your work.

Dr. David Harris: It was a pleasure talking to you, Lidia.

Dr. Lidia Schapira: And until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Like, share and subscribe so you never miss an episode and leave a rating or review.  

Guest Bio:

Dr. David Harris is an Associate Staff in the Department of Palliative and Supportive Care and Program Director for the Hospice and Palliative Medicine Fellowship at Cleveland Clinic.

Listen to ASCO’s Journal of Clinical Oncology essay, “Afternoons in the Tower of Babel” by Barry Meisenberg, Chair of Medicine and Director of Academic Affairs at Luminis Health. The essay is followed by an interview with Meisenberg and host Dr. Lidia Schapira. Meisenberg describes how oncologists and families of patients in the ICU lack a common language when discussing status and prognosis.

TRANSCRIPT

Narrator: Afternoons in the Tower of Babel, by Barry R. Meisenberg, MD (10.1200/JCO.23.00587) 

We talked for hours in that little windowless room adjacent to the intensive care unit (ICU) during his final week.

A patient dying of a toxicity that should have been treatable, but is not.

The oncologist's tasks:

to care for the man in the ICU bed by caring for his family; to knit up the raveled opinions of the many consultants; to forge from these strands a family's understanding of status and prognosis; to be a family's ambassador in the ICU, while others toil to adjust the machines and monitor the urine flow; to make a plan that relieves suffering and preserves dignity; and to do all this not with brute-force honesty but with patience, gentleness, and humility. 

The reckoning process begins for a wife, three adult children, and a daughter-in-law. The youngest begins the questioning.

“So, if our prayers were answered and the lung cancer is shrinking, why are we here? 

“It happens this way sometimes,” I hear myself saying, instantly dismayed by my own banality.

This is not a physiologic or theologic explanation. Its only virtue is that it is factual. It does happen this way sometimes, no matter how fervent or broadly based the prayers. I have wondered why it is so for more than 35 years as a student of oncology. But the quest to understand is far older than my own period of seeking. Virgil's1 Aeneas in the underworld observes: The world is a world of tears and the burdens of mortality touch the heart

In the little windowless room my words, phrases, and metaphors, delivered solemnly, are studied as if they were physical objects one could rub with the fingers or hold up to the light like Mesopotamian pottery shards with strange carved words. My word choices are turned inside out, and compared with yesterdays', I can see the family struggling to understand; they are strangers in a strange land. How lost they must feel, barraged by a slew of new terms, acronyms, and dangerous conditions. The questioning resumes. 

“Explain ‘failing,’

explain ‘stable,’

explain ‘stable failure,’

explain ‘insufficiency.’”

My first tries were themselves insufficient.

I try again; choosing carefully, using different metaphors:

-the heart as pump,

-the bone marrow as factory,

-the kidneys as filter,

-the immune system as … a loose cannon.

-the lungs as collateral damage

The soon-to-be widow restates my phrases to see if she has it right. Worn down by the exercise, I nod. Close enough.

Daughter-in-law, following carefully, is quick to interject,

“But yesterday you said the X-ray is ‘unchanged,’ so why does he need more oxygen?”

Did I say that? Yes, the notebook in her lap remembers all.

“You say now ‘rest the lungs’ on the ventilator, but last week, still on the oncology floor, you said get out of bed and work the lung as if they were a muscle.”

Carefully, I unwrap more of our secret lexicon:

“Proven infection” versus “infection”

“Less inflamed” is still dangerously inflamed.

Five sets of eyes, five sets of ears, five sets of questions. And the notebook. 

I begin again, choosing carefully. The learning is a process and occurs incrementally.

I tiptoe around acronyms and jargon. I assemble the words and metaphors to build understanding. This is part of the oncologist's job; at times, the most important part.

But words are not all the tools we possess. There is also the language of the body.

The grave subdued manner, the moist eyes, and the trembling voice, none of it pretend. The widow-to-be slowly absorbs these messages in a way that she cannot grasp the strange wordscape of the ICU.

With time, understanding drips in, and the wife makes the difficult decision that all families dread, but some must make despite the fear.

And tears come to this anguished but gracious family who manage, amid their own heartache, to recognize the dismay and bewilderment of the oncologist who used the right treatment at the right time but still lost a patient. The family sensing this offers to the doctor powerful hugs and the clasping of hands that opens their own circle of pain to include one more in search of why.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Barry Meisenberg, who is Chair of Medicine and Director of Academic Affairs at Luminis Health. In this episode, we will be discussing his Art of Oncology article “Afternoons in the Tower of Babel.” 

At the time of this recording, our guest has no disclosures. 

Barry, welcome to our podcast, and thank you for joining us.

Dr. Barry Meisenberg: Thank you for having me. 

Dr. Lidia Schapira: Barry, let me start by asking you my now famous question: What are you reading now and what would you recommend for our listeners and readers? 

Dr. Barry Meisenberg: I will tell you that, for a very special reason, I've been reading Thomas Wolfe. You know, the author of Look Homeward, Angel, and his final book everyone knows the title of You Can't Go Home Again. But I've been reading them with a very specific view. I'm interested in all the medical interactions and I find them immediately relevant to what I'm doing. And Thomas Wolfe talks about physicians treating dying patients. And the good physicians are also really caring for the family. And there are a couple of just wonderful examples. Would you like me to read you one?

 Dr. Lidia Schapira: I would love it.

 Dr. Barry Meisenberg: So this is from Look Homeward, Angel when Tom's beloved older brother Ben is dying from post-influenza pneumonia. And part of his family just can't understand it. They can't get used to it. And they keep insisting that the local physician do more. And this doctor who's Dr. Coker in the book, that's not his real name, of course. And he says to the sister, who's pretty close to hysterical. He said, “My dear, dear girl, we can't turn back the days that have gone. We can't turn life back to the hours when our lungs were sound, our blood hot and our bodies young. We are a flash of fire, a brain, a heart, a spirit, and we are three cents worth of lime and iron which we cannot get back.” And I say this that as we learn when we're in the ICU, we see a patient in the bed and we think, “end of life” and families look at that patient in the same patient, the same bed, and think of the young person, healthy lungs and strong desire for life. And we don't always see the same thing. And I just thought that piece of advice by that doctor was wonderful.

Dr. Lidia Schapira: That's beautiful. Thank you so much for sharing that with us.

Dr. Barry Meisenberg: Thank you.

Dr. Lidia Schapira: This is a very special piece. And the first thing that I wanted to ask you about is how did you choose the title?

Dr. Barry Meisenberg: I feel, as the readers will appreciate, that we often struggle to communicate with families because of the jargon and of the strangeness of the environment. And although the Tower of Babel is obviously a biblical reference where God punishes humans by scattering their languages so they can't communicate with each other, in the more sort of vernacular sense of that word, it just refers to a failure, an inability to communicate openly. And I think that's what this article is about.

 Dr. Lidia Schapira: Let's talk a little bit about what the article is about. I read it as a very moving reflection, very sincere reflection from an oncologist who is heartbroken because he's about to lose a patient to complications of therapy. Help me understand a little bit about your message and how you wanted to communicate the importance of choosing the right words when the message is just so dire.

Dr. Barry Meisenberg: It's actually two themes. You mentioned that sometimes when you choose the right therapy at the right time, at the right dose, and bad things happen anyhow that aren't supposed to happen, we take it very personally. And the second theme here is then our role as oncology, which I believe is at times the most important role we have, is to explain this strange environment to sometimes the patient, but also the family. And that means being aware of all the acronyms we're using and the jargon. Knowing that there are other physicians who they may have talked to who will say one thing and be seized upon one little phrase by the intensivist, by the nephrologist, by all our other colleagues. And feeling that it's our job, my job to wrap all those opinions together and to explain what it really means because they're all partial views.

 Dr. Lidia Schapira: And also to provide guidance for the family. At one point you needed to explain, but also help the family come to a decision, which is a very difficult decision, and that must have felt very bad for you in a very, very difficult situation in a windowless room next to the ICU.

 Dr. Barry Meisenberg: Again, I think it's actually our job. Our job is not just to write chemotherapy orders and order images. Our job is to care both for the patient and make sure the end of his life, in this case of his, is dignified, but also to care for the family, knowing what they're experiencing at the moment and what they'll experience after the death. I'm honored to do it. Some excellent intensivists can do this well. But I also think it's my job to do and I think it's important to teach young physicians that's their job.

 Dr. Lidia Schapira: So let's talk a little bit about that because I think for perhaps our generation and for more senior oncologists this always has been part of the job and we've always understood that it's our responsibility to be present. To be present as you, I think you use the word as an ambassador in some ways. To reconcile what they're hearing from other people, to provide a framework for understanding what has just happened, and to get past the technicalities of the information and the words written down in the notebook to really tell the patient and the family and comfort them to understand where they're at. But it's not the way many of our colleagues today view the job. Can you reflect a little bit on that? On whether or not it's really the oncologist who needs to be at the bedside to explain this?

 Dr. Barry Meisenberg: Well, by way of background, I am PGY 40, I think that's about right, PGY 40 of people of my generation. So I don't know if it's strictly generational, but I do have a whole view of an oncologist, holistic view, as opposed to a partialist view where we don't go into the hospital, we don't do end-of-life conversations in a hospital. We let the palliative care team do that or let the hospitalist do that. I just think it's not good for patient care. It's also not good for the oncologist because this is why we are viewed as a special breed of physician because we can do this. Other people are afraid of it. They don't like to deal with death or bad outcomes or bad prognosis. And we do it in our routine and people honor us for that. And so if we have a new ethic about this that “Let the intensivists do that or let the palliative care team do that,” we're losing what makes, part of what makes us special.

Dr. Lidia Schapira: That's a very interesting thought when we’ll hold and probably need to come back to it and reflect over the course of the day and the next several days. Let me go back to the scene that you give us in this beautiful essay. And you talk a little bit about the notebook, which I found very interesting, where I think it's the daughter-in-law of the patient is carefully recording the words and she's picking up on some what she sees as inconsistencies. Wait, yesterday you said, or last week you said "Get out of bed," and now it’s, “He can't.” You used this word yesterday, but this word today.

 Dr. Barry Meisenberg: Right.

 Dr. Lidia Schapira: Can you share with us a little bit about how you react in those situations? Because I was just sort of feeling the frustration of trying to say, "You need to drop the pen and we need to just think about what's happening here."

Dr. Barry Meisenberg: What you're referring to is this section, when the questioning, when our words are carefully examined, held up for review. Normally, I'm happy to have families write stuff down and record their questions, but if last week I said "stable" and today it's some other term to describe it, well, it is an apparent discrepancy says the notebook. And yeah, a week ago it might have been appropriate, “Get out of bed, get those lungs working.” And here we are five or seven days later, and he's on a ventilator because we need the lungs to rest. So explain that and it's in the notebook. Explain this apparent discrepancy, or another physician said he's doing good, meaning he's not progressive. And I'm saying “You’ve still got respiratory failure.”

 Failure is a powerful word, by the way. You’ve got to be careful when we describe heart failure, respiratory failure, bone marrow failure. So this is, whether it's the memory or the notebook, I don't consider it an enemy, but it just shows you how careful we have to be in what we say. And what we can communicate in 15 seconds to a colleague takes much more time, and you really have to use metaphor to explain that.

Dr. Lidia Schapira: So let me pick your brain a little bit. You describe yourself as a PGY 40, and maybe that's literal, maybe it's not. But as an experienced clinician, what advice do you have for some of the junior oncologists about how to sort of feel perhaps when they're being challenged in a difficult situation and how to choose their words and sort of cultivate that way of being with,  that presence that can really bring comfort to families?

Dr. Barry Meisenberg: That's a great question, and I just hope that we would all approach this with empathy to try and understand what the family is going through. And the article tries to bring that out, that there's a family struggling in a strange environment. And our patients and families may be very accomplished people, but now they're in a new environment that they can't control, they don't understand, so let's care about them as well. And I never take it personally, someone's challenging my advice or my knowledge. That's almost like expected. So that's how I would try and explain our role there.

 This particular family wasn't difficult in that way at all, and I hope that didn't come across that way. They were just very concerned and wanted to know and wanted to be educated and looked to me to provide that in a very respectful sort of way. But we certainly have had other families who insist that obviously there's something else better someplace else and some knowledge beyond what I bring to the table. But once again, what you just sort of care- I guess the best word is empathy or compassion for what they're going through.

 Dr. Lidia Schapira: Barry, if you can bear to share this information, is this a patient who died of a complication of immunotherapy?

 Dr. Barry Meisenberg: That's exactly right. Lung cancer, smoking history, got immunotherapy. Excellent clinical response until interstitial pneumonitis. So like a more than 50% response to the initial, I think just one cycle. And then though, the symptoms of dyspnea and progressive respiratory failure ended up in a hospital and other complications along the way, heart attack and whatnot. So it is based on a real patient, although the conversations are based on accumulated experience. But it was an actual patient and we knew it early, we used high-dose steroids early, and it just didn't seem to make a difference. And then second-line, third-line, therapies, many of your readers will know that these are all sorts of anecdotes, and one of them was tried as well, but just progressive respiratory insufficiency in a way that just like everything else, when there's a response, we don't really fully understand why some people respond and some don't.

 Dr. Lidia Schapira: And how do you deal with and how have you learned to deal with the grief that follows losing a patient, especially under these circumstances?

 Dr. Barry Meisenberg: Yeah, I don't know that I have learned how to deal with it. I mentioned in the article that I was welcomed into the circle of grief by this family who appreciated what I was feeling. Somehow it's kind of remarkable that some people do that. Some grieving people can understand others are grieving. So I don't really think that I've got a solution other than this sort of banal notion, as I mentioned in the article, that it's always been this way. Bad outcomes, bad things happen, and maybe it's the way of the world. I would feel differently if I had missed something, perhaps, but I grieve, I but don't blame myself and ready for the next patient next challenge.

 Dr. Lidia Schapira: I always think it's wonderful when we are the recipients of such amazing compassion from families and those moments really sort of, in a way, rekindle our vocation and our ability to sort of recharge a little bit, to be present for the next family. I wonder if writing about it in a way helped you process this experience.

 Dr. Barry Meisenberg: Oh, I think it absolutely does. And I'm so happy that this journal and this society gives us this opportunity and other journals as well. Because processing, which I guess is a modern term, is so important for us. There's a whole interest in reading things of this nature, not overly saccharine and not overly stereotyped because it doesn't always work out that way. But I absolutely feel that we're a brotherhood and sisterhood, and we need to share with each other because these are things we all go through, which I believe is the whole purpose of this section. Am I right?

 Dr. Lidia Schapira: You're absolutely right. And you sort of anticipated my final question, which was, as a community, I certainly feel we need these stories and we need to share these stories. But I may have asked you this question in a prior conversation, but can you tell me how you use stories in your career for teaching or for sharing experiences, or reflecting with colleagues or trainees?

Dr. Barry Meisenberg: I think they're a great opportunity, and obviously we want to encourage young people and medical staff of all ages to write their own and share. But we have a program specifically for residents and trainees where we look at some poetry or very short essays, some of the journals about these kinds of issues, and then reflect. One of them for example is how do you overcome physician errors, and a whole set of readings and poems about errors that have been made and how they linger with you your whole career. Someone wrote a beautiful line, "worn smooth by mental processing," because in general, we don't give them up. So these kinds of things I think are very helpful in reflecting and helping people understand that this is something we are all going to have to face and we’re all going to have to deal with in our careers. And you can’t hide it, you’re going to deal with it so we can’t hide from it and it is an effective coping measure.

Dr. Lidia Schapira: Well, thank you so much for sharing your thoughts. My heartfelt condolence on the loss of your patient.

Dr. Barry Meisenberg: Thank you.

Dr. Lidia Schapira: And keep writing. For our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO shows at asco.org/podcasts.

 The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio: 

Dr. Barry Meisenberg is Chair of Medicine and Director of Academic Affairs at Luminis Health.

Additional Publications:

Questions for the Oncologist, by Dr. Barry Meisenberg and accompanying podcast.

Listen to ASCO’s Journal of Clinical Oncology essay, “Market, Gift, Everyday Ethics, and Emmanuel Levinas in Patient Care” by Alan Astrow, Chief of the Hematology and Medical Oncology division at the New York Presbyterian Brooklyn Methodist Hospital.

TRANSCRIPT

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Alan Astrow, Chief of the Hematology and Medical Oncology division at the New York Presbyterian Brooklyn Methodist Hospital. In this episode, we will be discussing his Art of Oncology article, "Market, Gift, Everyday Ethics, and the Emmanuel Levinas in Patient Care." 

At the time of this recording, our guest has no disclosures. 

Alan, welcome to our podcast, and thank you for joining us. 

Dr. Alan Astrow: Thank you for inviting me.

Dr. Lidia Schapira: Your article has a very long title, and we've got Markets and Gifts and Ethics and a philosopher. So let's start by helping our listeners and maybe our readers to really understand the intention of this essay. What is the message of the essay?

Dr. Alan Astrow: The message of the essay is that we need to be reflecting and be mindful of the values that underlie medical care as we practice every day. 

Dr. Lidia Schapira: And if I were to quiz you a little bit on that and push a little bit, what are those values? And how does perhaps market conflict with ethics and mission?

Dr. Alan Astrow: Trust, caring, honesty, thoroughness, dedication to the patient, focus on the patient and the patient's needs. The problem with market or the danger of market is that it can sometimes distract us from focusing on the patient and that patient's needs.

Dr. Lidia Schapira: So how would you respond to somebody who says, but we need organization, we need markets and finances in order to have a system that provides health care? Where do you see the front of conflict, perhaps between those who are more mission-driven, as you've just beautifully articulated and have the trust in the patient's care front and center, and those who are more concerned with the productiveness and efficiency in collections?

Dr. Alan Astrow: I have tremendous respect for my administrative colleagues who are focused on keeping hospitals solvent. I worked at a hospital earlier in my career that was not focused as it needed to be on making sure the hospital had a sound strategic plan. And that hospital is now condominiums. So, absolutely, we need to be aware of financial realities and hospitals need to pay their bills. But underlying that, we can't think that the first mission of a hospital is to earn money. The first mission of a hospital is to provide service to those in need. And then our colleagues in administration have to help us find ways to do that in a manner that's financially responsible. But we think first of the patient and that patient's needs. 

And patients understand that. Patients don't want the hospitals to go bankrupt, and patients want their doctors and nurses to be paid. Patients do worry sometimes, with good reason I think, that the system may be overly focused - that's the issue, it's an issue of balance - overly focused on markets, overly focused on finance. It seems as if we're living in a world in which money is driving everything. Money is speaking with too loud a voice. That's the issue. Money is important. But the needs of the patient and what our mission is to patients have to be the driving force of the hospital. That has to be the predominant voice, the loudest voice. Markets should be serving the patient and the patient's needs, not the other way around.

Dr. Lidia Schapira: I think I understand that clearly. But now let's talk about the gift that's in the title, and that, in my mind, was a very imaginative way of presenting what we bring that is not just a service. Talk a little bit about how you understand the gift of presence or the gift of caring. 

Dr. Alan Astrow: The gift is when you're really lost in the task itself. When you're really focused on that patient in front of you and trying to understand the patient and trying to address the concerns that the patient has. And during those moments when you're focused on that patient, you're not thinking about money. No, you should not be. But the first predominant impulse needs to be what the underlying mission of that organization is. And in medicine, it's caring for the patient. 

And so, for example, when we hear administrators saying we're going to reach out to this and that market, well, that to me shows a mistaken focus. We understand that the hospitals need to raise money from banks and other places in order to make needed capital investments. But we need to think first and foremost about the people in the communities we serve, and then the markets should be at the service of people and communities. I think in general, it's a larger issue. The power of money is speaking in too dominant, in a way, in too many aspects of our world. And medicine, above all, needs to resist that. And there's a manner in which healthcare institutions are functioning these days which I think leads patients to have reason to doubt. And so if they have doubts about what our primary interests are, they will lose trust. And the loss of trust is devastating to the medical relationship.

Dr. Lidia Schapira: Let me explore that a little bit with you, Alan. I would say that in my mind, providing that caring presence is part of the mission of medicine, but you talk about a dimension of gift. Help me and our listeners and readers understand a little bit more about the gift. You talk about the gift being something that's exchanged, that there's even a reciprocity in giving and receiving gifts. How are we to understand that perhaps through the lens of the philosophers and the big thinkers here?

Dr. Alan Astrow: I'm borrowing this from Lewis Hyde. He was referring to a traditional gift economy. And according to Hyde, who is taking this from cultural anthropologists, that in many tribal communities, tribal societies, just, for example, in the Native American cultures in our land that were not cash-based, they're based upon a notion of gift. You would provide a gift to the other without any expectation of payment, but there was a passive understanding that at some point that gift would be returned to you. And that's how these societies, according to cultural anthropologists of course, it's probably hard to pin this down, but that's the way Hyde has presented it. This was the base of the economy of gift-oriented cultures.  

And he was surmising that there's always an element of gift he felt was particularly in the world of creative artists, because if the artist is just thinking about how he or she could make money, their work is not likely to be very good. The artist needs to focus first on the gift dimension to it, the part that comes to them really as a gift. Your talent is a gift, and you may be able to see that your talent as a physician is a gift. And so much of our skill really comes from the gifts that others have given us in a way. 

Just think of our training. We think about how hard we worked and it's true and how many years we gave into our training. But isn't it also true that we learned from the illnesses of others? They shared their stories, they shared their experiences with us even when we didn't know that much and we didn't have that much to offer to them really. We were relatively unskilled. We developed our skills through treating people who presented themselves to us in a way hoping that we would help them, certainly. But their presence to us, since we were not well-trained at that point, was a bit of a gift. That's how I would see it. 

And if you see it as a gift, perhaps it could help us in our orientation toward the service we need to provide to others, those moments when we might feel somewhat resentful. Well, maybe it's a good time to just remind ourselves a bit. Not that I don't feel resentful or exhausted or- I'm just like anyone else, but I can remind myself that yes, it's a gift to be a doctor or a nurse. I believe, I really believe that. In so many fields there's so much just about the finances and the bottom line, and that's not true about being a doctor or a nurse. That's not ultimately what it's about. And it's one of the great pleasures of being a doctor how we can help other people with our skills.

Dr. Lidia Schapira: When we hear the word "gift," unfortunately, our minds may go to things that we need to declare that could potentially be conflicts. But you're talking about gift in a totally different way. You're talking about giving the gift of our presence and recognizing the gifts that our patients give us by teaching us, by allowing us to learn from their experience through their experiences. And in your essay, you talk a little bit about appreciating this and have an impact on the culture of medicine. So, can you talk a little bit more about how this appreciation of gifts exchanged and time spent together and talents shared can impact favorably on the culture of medicine even perhaps, as you're hinting, improve our sense of wellness or reduce our risk of burnout? 

Dr. Alan Astrow: When we think of our work as partly a gift we can give to others and a gift we have received from others, I believe it enhances our morale and the morale of whatever enterprise we are part of. If we all, I believe, are able to appreciate more of the dimension of gift in healthcare, it has the potential to have us see things differently, organize the way we care for patients and each other differently, and potentially transform our whole system of care. Because finally, it starts with one-to-one encounter, I believe. But the one-to-one encounter is influenced by the larger systems that shape what we're able to do. So, I think if we doctors and nurses are able to articulate a gift dimension to care, I think we can help our administrators see it that way. 

Because I think my experience working with many in administration is that they have chosen to work in the field of healthcare because administration wants to see it that way, too. Many of our most talented administrators could be working in other fields - finance, law - they could be making more money in other areas. But they chose to enter healthcare because they do want to provide service to others. And it may be that many in administration, but many of those who are responsible for keeping hospitals financially solvent, are just as concerned as we doctors are by the overweening presence of financial concerns as they more and more dominate our day-to-day lives as physicians, nurses, and others in healthcare.  

I don't want to sound like a Pollyanna here. We do have to be able to pay for things, no question about it, and there's no simple solution to any of these problems, and how should healthcare be paid for? Should we have single payer? These are complicated issues. But I think if we think about it, we should think about how we can organize our system of care so that we can further enhance the dimension of gift. That would be the point.

Dr. Lidia Schapira: Well, we really appreciate the depth of your reasoning. It certainly is appealing to me, and I hope that it resonates with many of our readers. You've made a very strong pitch here for humanizing and really putting mission front and forward in your incredibly erudite way. 

So, Alan, how does Levinas enter our conversation? And how does Levinas enter the thinking that you had in putting these pieces together for the essay?

Dr. Alan Astrow: So Levinas is one of the great thinkers of the 20th century, and his core insight is that the reason we are here as human beings, in his view, is to bring the ethical order into being. So we're not here to earn the maximum amount of money. We're not here to face our own mortality. No, we have a specific purpose to bring the ethical order into being. And, as doctors and nurses engaged every day in actions that we're trying to help people, he would claim that we should be trying to bring the ethical order into being in healthcare in our day-to-day actions. He was very focused on the idea of face-to-face ethics, that it's in the experience of the other, seeing the face of the other, that you need to respond. We ought to respond to the needs of the other. At that moment, we're not thinking of ourselves at all. We're just responding to the needs of the other. And in that way, we are bringing the ethical order into being. 

Dr. Lidia Schapira: So the dimension of gift giving is layered onto this ethical order. How do we put the two thoughts together?

Dr. Alan Astrow: When you give a gift, ideally, you're trying to think about the other. You're trying to think about what the other needs. The gift is not about you. It's about what's going to make the other happy. It's what's going to make the other feel acknowledged. That's what the nature of a gift is. And you're not really expecting anything back. In medicine, too, it's not about what the patient could do for us, it's only about what we can do for the patient and the patient's needs. So, it's a true gift of the doctor to the patient. And that's why the patient can feel trust in us because they sense that it's a gift of us to them. We are not expecting patients to do anything for us at that moment. We're not expecting them to be paying us, although we hope we'll get paid. We're not expecting them to enroll in a clinical trial, although we might eventually hope that they will. But at that moment, it's pure gift. That's where the trust comes from. The gift comes first, the others later.

 Dr. Lidia Schapira: So one could argue, Alan, that that is just the ethical conduct of medicine, that there is no extra here, that there is no gift, that that is just how we should behave. So help me understand a little bit more then, about how you understand gift. From my experience, as I was taught by cultural anthropologists, gift can be a gift of time, gift can be a gift of presence. And it is those sorts of additional things that we convey through our actions or transmit through our presence. Reciprocally, we also are gifted by our patient's presence and by their gift of spending the time they have left with us. How do you understand gift?

Dr. Alan Astrow: Okay, so you're saying a gift is something extra that we add on. Okay, I can accept that. I wouldn't deny that. My point would be that, yes, a gift orientation is central to the ethical practice of medicine. Yes, it is the ethical practice of medicine. But what we're seeing in our current world is that that orientation is increasingly threatened. Isn't that what we're seeing? That doctors are selling practices to private equity? That we have more and more for-profit businesses in healthcare? And it seems in too many places, patients fear that the primary focus is not on the gift dimension, but the primary focus more and more seems to be on the mercantile aspect, the money aspect. So my point would be that, yes, we ought to know what the ethical practice of medicine is. But it's too easy to forget, isn't it? And don't we see that that's what's happening? People are forgetting. We all need to be reminded - who is going to remind us? 

Dr. Lidia Schapira: Thank you, Alan, for your contribution.  

And to our listeners, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast. 

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

TRANSCRIPT

Listen to ASCO’s Journal of Clinical Oncology essay, “Cemetery Rounds” by David Steensma, a hematologist-oncologist in Boston. The essay is followed by an interview with Steensma and host Dr. Lidia Schapira. Steensma describes the complex emotions that result from encountering graves of former patients on walks through a cemetery in his New England hometown.

Narrator: Cemetery Rounds, by David Steensma, MD, FACP 

In the summer of 1784, the body of a 4-month-old infant named Sally was the first to be laid in the earth of the hill next to my home. The gravedigger’s backhoe still cuts into the ground about once a week in what has become the largest cemetery in this Massachusetts town. During the recent pandemic, the graveyard was an open place with no need to wear a mask, so I often walked its quiet paths in the evening to stretch my legs after long hours hunched over a computer. These unhurried ambles were a chance to reflect on the day’s events and make plans for future days—and sometimes to ruminate on life and how it ends.

Little Sally’s simple slate marker, with a willow and urn carved above the names of her parents and a short, grim epitaph—“A pleasant plant, a blooming flower, Cut down & wither’d in an hour”—has been joined by thousands of other tombstones over the past two centuries. After a dozen years living in this Boston suburb, I now recognize some of the names on these memorials: Stones that mark the final resting place of people who were once friends or fellow members of the same Congregational church that Sally’s family belonged to long ago, and stones with surnames shared by nearby schools and streets. 

There are too many gravestones that recall young people who were once classmates of our children in the town’s schools. Walking past those memorials means remembering moments of shock and sadness: news about car wrecks and ski accidents, suicides, sudden collapses on hockey or football fields, and the other disasters that take the lives of the young. Stones for the 21st century children are all in the newest part of the cemetery, with its memorials for those who died within living memory. In that part of the cemetery, visitors still often leave toys, Boston Bruins or New England Patriots pennants, lacrosse sticks, and horse reins. 

Sally’s stone, in contrast, is the oldest part of the cemetery. It is surrounded only by close cropped grass and stout trees. Once I saw a freshly cut flower laying on Sally’s grave, and I wondered who left it. It is rare to see those ancient graves get special attention—a bracing reminder that no matter how bright our star might shine in our own era, we will all eventually be forgotten.

The largest and most prominent gravestone in the cemetery recalls the grandson of a local eccentric. This boy drowned in New Hampshire’s Lake Sunapee at age 17 while trying to save another teenager who had fallen from a boat. It was the second time a close family member of the man had drowned: In 1893, as a child, he watched his older sister slip beneath the swift water of the Annisquam River. He reacted to this pair of tragedies by declaring a lifelong war on gravity.

 Grief is not always rational, although it may be productive. The eccentric man became wealthy—by predicting the 1929 stock market crash and by starting a successful business analysis firm—and he created a well-funded private foundation to understand and combat gravity. This Gravity Research Foundation sponsored important conferences attended by Albert Einstein and other luminaries and awarded prizes to Stephen Hawking, Freeman Dyson, and a half-dozen Nobel laureates in physics. Gravity, however, remains unconquered and incompletely understood. All of us will eventually be pulled into the earth by its unrelenting grip. A growing number of gravestones bear the names of people who were once my patients at a Boston cancer institute. Some days it is hard to see those stones on my evening walks, noticing name after name that once graced a clinic schedule or hospital rounding list, and to be so starkly reminded of how our best efforts ultimately failed them. 

Most of the time, though, what I recall are the happier moments with these patients, which keeps these walks from being morbid. Cancer centers are not known for being joyous places, yet surprisingly, often there is laughter in clinic rooms or on morning hospital rounds. We oncologists celebrate milestones with our patients: remissions achieved, college degrees completed, new grandchildren, and long awaited weddings attended. We know that graves like these await all of us, but for a while, we can put that aside and not just live but thrive.

In one corner of the cemetery, a small marble bench faces a stone that marks the final resting place of one memorable former patient: A young woman with a wicked sense of humor who, as a grieving relative said at her funeral, was wise beyond her years, and taken before her time. When I rested on that bench last night, I was reminded of what French vascular surgeon Ren´e Leriche wrote in 1951, at the end of his long career: Every surgeon carries within himself a small cemetery, where from time to time he goes to pray-a place of bitterness and regret, where he must look for an explanation for his failures. For me that cemetery is a physical place as well as metaphorical. 

Yet when I think of her, I always smile, remembering who she was, and the happiness she brought to those around her. When she was alive, her hospital room was a place of laughter and hope rather than bitterness and regret. Even after a long day in the clinic, when I made hospital rounds in the evening, it was a joy to see her and discuss the events of the day. I do not know how she kept it up for so long in the face of so many disappointments and frustrations. Everything we tried to treat her cancer eventually failed her—every antibody, cell therapy, and drug after drug after drug. Even when new treatment regimens were declared at national meetings to be active, well tolerated, and worthy of further study, she always seemed to be one of those who had not responded or who suffered intolerable side effects. One door after another closed so that soon the only available doors were the ones that took her back home, with the support of a kind and skilled hospice team.

At times, she could sense my sense of failure as I sat by her bedside and would try to reassure me as if the sorrow was mine instead of hers. It’s all right, it will be OK. We did what we could. You did what you could. Now it’s time to move on. Where did she get the strength? Eventually, as evening turned to night, it grew cold in the cemetery. I moved on, buoyed by her memory. Saying good night to Sally, I headed home.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. David Steensma, who currently leads hematology early development for a biotech company in Cambridge, Massachusetts, and was for many years a faculty member in the Leukemia Program at Dana-Farber Cancer Institute and Harvard Medical School, and also a past Editor for Art of Oncology. In this episode, we'll be discussing his Art of Oncology article, “Cemetery Rounds.” 

Our guest disclosures will be linked in the transcript. David, welcome to our podcast and thank you for joining us. 

Dr. David Steensma: Thank you for having me.

Dr. Lidia Schapira: I'd like to start by asking you a little bit about your process for writing. You have published beautiful essays in JCO and in other venues, and I know you've always been a writer. Talk a little bit about that, especially for some of our younger listeners 

Dr. David Steensma: This is the first article that I've submitted to the Art of Oncology in a number of years, actually, and this one was a long time in gestation. One of the things that I found over the years is that whether I'm writing and how much progress I'm making is a really good barometer of where I'm at mentally. And I think the fact that this took the better part of three years to write probably illustrates how difficult these last few years have been for me as they have for so many of us. Sometimes writing happens very quickly. You get a germ of an idea, something maybe you've been mulling over for a long time and it all falls into place. But much more often, it's a process in which one is trying to express what is very difficult sometimes to say appropriately.

Dr. Lidia Schapira: Some of your articles, including this one, have elements of history in it, and I think that's something that you've always been interested in, not only medical history but history in general, sort of what was happening at a time when somebody was ill or an illness was first described, or in this case, people were buried. Tell us a little bit about that, about combining your interest in history with your medical writing. 

Dr. David Steensma: I think I like to tell stories and really always have. If I didn't do medicine, one of the other two alternatives was journalism. And I've always been interested in how things got to be the way that they are. So I think that naturally is reflected in the writing. 

Dr. Lidia Schapira: I know you're also an avid reader, so what would I find now on your night table or on the desk alongside the medical journals that probably are unopened?

Dr. David Steensma: Wow. I have some science. I have Ed Yong's amazing book about the microbiome. I just started reading I’m Glad My Mom Died by Jennette McCurdy, a former child actor, which has just got rave reviews, so reading about her difficult upbringing in this memoir and her mother's death from breast cancer. And so the third one over on the shelf over there that I have off is ASCO-SEP because I'm doing the 10-year medical oncology board renewal next week. I've been doing the LKA for hematology, but I've also kept up MedOnc and internal medicine. It was just too painful to think about all three. So I have all these NTRK and ROS1 inhibitors and pathways for advanced cervical cancer jumbling around in my head right now, which I'm sure a lot of our listeners could relate to.

Dr. Lidia Schapira: I can relate to the anxiety I felt the last time I was recertified, and I swore it would be the last time. So thank you for spending a little time with us. Maybe it's a distraction from the other. Yeah. 

I wanted to talk about “Cemetery Rounds.” We were so happy to get your paper after all these years. A reviewer said, “Oh, thank goodness, Steensma's writing again.” Tell us a little bit about this quiet, meditative practice of walking along the cemetery near your home, especially during the pandemic.

Dr. David Steensma: Well, the pandemic did so many weird things, and just everything was different, from the way we bought food to the way that we caught up with loved ones to the way we structured our days. Everything changed, and one of the things we ended up doing was spending even more time in front of our computers. And I'm kind of fidgety, always have been. So by the end of the day, I'd had a lot of energy I needed to get out and thought about where I could walk nearby that was a good place to stretch my legs. And we lived right around the corner from an old cemetery and quite a large one, a cemetery that actually got quite busy during COVID, so I didn't really think about that part of it. But they brought in at the beginning of the pandemic, all kinds of extra materials for digging graves and cleared out some additional area. It was really quite striking just seeing that happen. 

But one of the things I think I didn't prepare myself for mentally, walking through that cemetery, which is a beautiful place, very respectful, and well kept, was how many patients and other people I would recognize. And just walking past stone after stone with names that I recognized, people who had been my patient or those of colleagues that I'd interacted with on inpatient services over the years, a number of children who had been our kids' classmates in the town's public schools and who had sadly run into one tragedy or another. It was really quite striking how many of the people I felt like in a very old cemetery, how many names I recognized. There were a lot, of course, I didn't, but their surnames were on the streets nearby and the town founders. And this sort of made me reflect, particularly when I noticed that we don't normally see our patients' graves. We may attend their funerals or their memorial services, but even that often the last time we see them is when they're going home to a hospice setup or to an inpatient hospice or sometimes just at a last clinic visit, and then something sudden happens.  

So this seemed like something that could have been very sad. But I think partly because of the tranquility of the place and the mindset of the pandemic, there was actually a lot of reflection of positive things, interactions with these patients - the happiness sometimes that we brought to each other, conversations that had been difficult, but also events that have been happy milestones that they got to see because of our care. And then also the hard realization that ultimately modern cancer care failed them that's why they were there. So just a lot to reflect on in a time when it seemed like death was all around anyway because of the pandemic. So I thought, gosh, this would be something I think people could relate to. 

Dr. Lidia Schapira: It struck me that you describe your approaching these gravestones as an intimate space that we normally don't get to be part of, that sort of belongs to the family and the friends and the community, but the clinician is often not there. And it struck me also that the immediate thing you talk about was how therapies have failed them. And I just wondered if you could talk a little bit more about that. Maybe because we're both part of the same culture, it's so easy immediately to think that we did something wrong and that's why they ended up there. But can you reflect a little bit more about that particular aspect of our work?

Dr. David Steensma: Yeah, just because an outcome was sad doesn't mean that mistakes were made, but may reflect the limitations of the science and art of medicine as they currently are. I think surgeons wrestle with this a lot. And in fact, I included a quote in the essay by Rene Leriche, a well-known French vascular surgeon in the 1950s, who talked about how each surgeon has their own personal cemetery of a place that they go to reflect from time to time. And that's something that in M&M conferences I was always shocked as a student and trainee just how brutal they were on each other and on themselves. It's part of this surgical culture. But I think surgery naturally lends itself to thinking that somehow you did something wrong.  

And perhaps in medicine, we're a little bit more in touch with the fact that we followed the guidelines perfectly. We got advice from colleagues, patients were presented at conferences. We enrolled them in clinical trials of things that seemed interesting and promising and just that the disease just kept coming back. And so that's not necessarily a personal failure. And I think in that circumstance, there's maybe a little bit more space, a little bit more permission to connect with the memory of that person in a positive way and reflect on who they were and what they meant for their families and for the others that they interacted with. And so when I see these stones, I don't think, "Oh man, I really screwed up, and that's why they're here." Never, never. I think about, "Gosh, we tried so much, and he or she went through so much, and yet this was where they ended."

Dr. Lidia Schapira: It seems to me a very healthy approach, certainly. And I loved the surgeon's quote here in the essay, that every surgeon carries within himself a small cemetery, not just the surgeon. I think, as you said, we do as well. I also love the framing of the fact that it's not so much guilt but sorrow that we carry for them and also that they affect our lives. I remember when you talked about your patients, I remember the article you published about Michaela, the little girl who played the cello on the Leukemia ward and got to be famous. And in this particular article, you talk about a young woman who somehow seemed to think that she needed to comfort you and reassure you that you did everything that you could. Those are such beautiful memories, and you have such a talent for sort of paying tribute to your current and past patients that this is really so beautiful to read. And with that, I just wanted to ask a personal question, if I may, and that is, do you miss the clinical work?

Dr. David Steensma: I do, definitely. So, yes, I am always impressed by the strength of patients and of their families often, and people manifest that in different ways. But I've just seen so many amazing things over the years. When I decided that I wanted to try to influence cancer care and hematology care in a different way and move to direct hematology and early development in a research institute affiliated with a company, I, unfortunately, had to step back from seeing patients at Dana-Farber because it was considered a conflict of interest. It hadn't been until just a few months before but, you know, new rules. So I do miss that. And I've been thinking a lot about ways to get back to making those connections because, yes, it is meaningful to be developing new medicines, but there's something also very immediate about being there for a person in a time of need. And those relationships that you build, by far, that was the hardest part of making the job transition with so many patients that I had long-term relationships with; that was hard. 

Dr. Lidia Schapira: So my last question is more philosophical. I am teaching a course for undergraduates that involves explaining how people experience illness. So I've been reading a lot of illness memoirs throughout my career, and I was looking for scholars who had worked on this and found, of course, Arthur Frank and his themes of how illness is portrayed by patients, stories of shipwrecks and catastrophes or quests or restitution of meaning. And I wondered if you had given any thought to the same sort of narratives that oncologists play in their heads of how they treat patients. What do you think are the most important themes in the way oncologists think of and remember the patients they've treated?

Dr. David Steensma: One of the things that's special about oncology is that even though it's a profession that is very much scientifically based, that we connect with patients at a point in their narrative and often get to know them over months, years, and that narrative and who each of us is along that journey change over time. So I think that's what makes our field really compelling. At least it was very attractive to me. That's very much true. I think of other fields as well, where you do have longitudinal care of a patient, but there is something special about a cancer diagnosis and what that makes people think and how their families and people around them react. That I think, is unique.

It really is an honor to be with patients through this narrative, and Arthur Frank has written about that and about the sort of patient story and how that evolves. And I think that's a healthy way of thinking about what people go through. And we also have to remember it's their story that we're fortunate to be able to witness. And when you walk past a tombstone, you know maybe a little bit about how that story ends, but there's always a birth date and there's a death date, and there's a dash in between, and we know very often very little about that dash. Maybe we were a little part of it, but that encompasses their whole lived experience. 

Dr. Lidia Schapira: I think that's a beautiful way to end this. I tend to think of us when we're in our clinician roles as co-editors of that story if we are invited to play that part, and that's such an honor and privilege.  

David, thank you so much. I hope and ask that you please continue to write. We all have so much to learn from you.  

Until next time thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all ASCO shows at asco.org/podcast.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

 Show Notes:

 Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio: 

Dr. David Steensma is a hematologist-oncologist in Boston, and formerly long-time faculty member in the leukemia program at Dana-Farber Cancer Institute and Harvard Medical School.

Additional Reading:

A Cello for Michayla, by Steensma

Listen to ASCO’s Journal of Clinical Oncology essay, “A Labor of Love” by Dr. Rebecca Kowaloff, a Palliative Care Attending at the University of Massachusetts. The essay is followed by an interview with Kowaloff and host Dr. Lidia Schapira. Kowaloff shares how she connects and supports young patients and families at the end of life.

TRANSCRIPT

Narrator: A Labor of Love, by Rebecca Kowaloff 

I had always thought that I gave too much space for death at the bedside of my patients. More than most of my medical colleagues, I seemed to accept its inevitability and had learned to talk about it, to watch it, and to sit with it. I did not cry, even for the patients robbed in their middle age by cancers sucking their life from within, aging them in hyperspeed before my eyes. Why did the weight not feel heavier to me when so many around me seemed unable to carry it? Despite the frailty of his body when we met, caring for Michael showed me my strength. He was a 25-year-old investment banker on Wall Street when he was diagnosed with a rare sarcoma. I wondered what he was doing the moment that first cell divided. Was he working late, handing a $100 tip to a taxi driver as his father said he sometimes did, or practicing with his college soccer team? Was this disease written into his genetic code when he was traveling the world with his family, smiling with missing teeth on a dock in Egypt in the pictures his father showed me? Did his body know it would have only 29 precious years, making him so generous to strangers, so thoughtful of others, and so eager to experience life and travel the world? I am sure he was full of hopes and dreams that shattered at the moment of his diagnosis. Amid the onslaught of emotions at diagnosis and as various chemotherapy regimens failed him, he started a foundation for sarcoma research to leave a legacy of helping children with similar rare tumors. 

Outside the hospital, we would almost have been peers as I was less than 10 years older and could imagine the assumptions he would have had about his life would be similar to my own. Suddenly there was no meeting a life partner, no wedding, and no children. There was no career advancement, no retirement trips, and no new hobbies or interests. There are books that will go unread and current events unexperienced. The world which had been expanding at a spectacular pace suddenly contracts to one person’s orbit: family, close friends, and what dreams can be realized on a shortened timeline in a perhaps newly limited body. He moved from New York City home to his mother’s house, returning, in some ways, to childhood. 

His soft-spoken mother listened to my prognostications with grief but not surprise, and my heart ached and eyes welled as I thought how she was watching her baby die. Each night on my drive home, I wept for her. When she saw him walk for the first time, she must have wondered what sports he might play. When he spoke for the first time, she might have wondered what conversations they would have, what speeches he might give, what school plays he might perform, and what songs he might sing. Like me she might have imagined cheering him on in sports, dancing with him at his wedding, and holding his children. She had watched him forge a path onto Wall Street and earn the friendship and respect of teammates on ever more advanced soccer teams. The sadness of her first child leaving home for college had surely receded as he self-actualized into a thoughtful, well-liked, and successful young man. And then came the diagnosis, and she watched all that her son had built slip away, watched him cling to as much normalcy as he could as the sarcoma ate his legs, sank his eyes into his skull, and sucked the color from his still-thick hair. 

His father appeared one evening almost a month into his hospital stay with the desperate questions of a parent who has been in such deep denial he had not even told his brothers back home about Michael’s illness. In a power suit, he blubbered that he could not live without his son, his "light," and begged me for fantastical treatments to fix him. In a tiny windowless meditation room, I rode the waves of despair with him. I explained over and over why our best efforts were no match for Michael’s cancer. 

Michael and I were practically peers and yet he entrusted me to lead him into this deep dark forest of the unknown, his final journey. Most times when entering his room I thought he had begun to "transition," his eyes half closed, his skin so pale and translucent, and his body so frail. One morning, I sat next to his bed and gently told him he was not improving, his lungs were failing, and I could not, would not, recommend intubation, which seemed imminent. He protested, asserting from behind an oxygen mask that he felt he was improving. He talked about physical therapy and restarting the treatment that had led him to this hospitalization, that had finally failed as he had always known it eventually would, but which was his last hope. His denial was his last defense. I met him where he was, shared his hope, but held fast to reality, framing the decision not as a choice he had to make, but as a recommendation from a trusted physician and an acceptance of his body’s truth. He agreed, do not resuscitate, do not intubate. He thanked me and asked why I was the only honest one on his team.

When we entered the room to recommend against a BiPap bridge to nowhere, his father tried to block the painful conversation with his body and his pleas “No, please, I don’t want him to hear this!” I sat at Michael’s side, completing an arc of love and care with his mother, sister, and nurse, and put into words what he knew and was living. His answer broke us all, “Done.” 

This one word, said with surprising strength and finality, felt just as defiant as all his previous optimistic phrases, although it was an acquiescence to reality. To his end, Michael directed his care and made his own decisions, and he made it clear that he was finished with cancer before it

finished him. For the first time ever, I sobbed at the bedside. I told Michael I would never forget him and what an honor it had been to care for him. The only response he could muster was, “Likewise,” which will live inside my heart forever. 

His mother, pregnant with grief for 4 years since his diagnosis, began her labor of loss, the painful, arduous separation of child from mother. His breathing became more labored, more erratic. Eventually his consciousness shifted beyond the scope of the room. Had his eyes been

open, I know I would have seen the look that I have come to identify with those on the precipice of death: Eyes beginning to glaze, one foot in this world, one in the next, looking beyond us. There was no more color to drain from his face, his translucent skin draped across the angles of his frame.

Finally, 3 days later, he returned to that from which we all come into being. The pictures at Michael’s funeral were interchangeable with my own from my childhood and college years. The lost tooth photos and pictures taken in friends’ swimming pools, huge grins on family vacations in the woods, or in front of monuments. I could almost hear the raucous whoops of a soccer team celebrating after a game and could hear the giggles of posing teenage girls with boys jumping exuberantly and mischievously behind them. The red-faced newborn peering over his mother’s shoulder and the toddler posing in overalls with his baby sister were similar to pictures of my own son.

His childhood snow suit was tacked to the wall next to his college jersey. He was every mother’s child. His college soccer coach in the funeral receiving line commented on how hard my work must be. I thought back to weeping at the bedside with his family and nurse. I thought back to Michael’s bony hand reaching for mine on the bed as I walked him through a symptom management plan and his reassurance that he trusted me to keep him comfortable. I recalled sitting outside his room with his father as he cycled through despair, gratitude, and nostalgia while looking through the pictures he kept close to his heart in his suit jacket. My heart was full of awe at the unbelievably precious opportunity to enter someone’s life and family at such an extraordinarily raw and sacred time. I was full of gratitude to be able to join that journey as a human being, sharing sadness and honesty and, thankfully, hopefully, being able to bring some small measure of comfort. I responded, as usual, “but it’s so rewarding.”

Driving from the funeral, I thought about his family returning home after the last acquaintance had left the funeral home, with the distractions of planning a service, choosing a casket, and greeting mourners while sharing anecdotes over. Like returning home from the hospital with your first newborn, their lives had irrevocably changed. New parents must adapt to a new presence, a new being in their life. They must make space for it. Michael’s family now had to adapt to the absence of a presence. Like a new mother’s first discovery of stray burp cloths on the couch and tiny socks stuck in the recesses of the washing machine, they will be caught off guard by his chapstick tube left behind on the coffee table and his half-read book left beside his bed. Caring for Michael showed me that my strength to be present for and bear witness to these difficult deaths is my humanity and my presence. I understand that I do not feel consumed by the heaviness of the work that I do because I distance myself from it, but because I sit with and bear witness to the human experiences, recognizing that doing so is my greatest gift. Becoming a mother changed my practice in a powerful way. I now recognize that every patient is somebody’s baby. Many of the mothers who no longer recognize their children once looked at them with an all-consuming maternal love. I return to Michael’s bedside in my mind as a way to dip back into my humanity and a grace that is not accessible in everyday life. There are no medications or procedures that will lessen the pain of loss or fear of death, and we in palliative care have only the feeble tools of medicine at our disposal. Michael’s story reminds me that in the end, the greatest tool we may have to offer is love.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of Oncology. I'm your host, Dr. Lidia Shapira, associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Rebecca Kowaloff, Palliative Care Attending at the University of Massachusetts. In this episode, we will be discussing her Art of Oncology article, “A Labor of Love.”

At the time of this recording, our guest disclosures will be linked in the transcript.  

Rebecca, welcome to our podcast and thank you for joining us today. 

Dr. Rebecca Kowaloff: Thank you. I'm excited to be here.

Dr. Lidia Schapira: Let me start by asking you a little bit about your process for writing. Are you the kind of physician who writes and has always written, or is the process a difficult emotional experience? Do you write for pleasure, or was this a one-time piece for you?

Dr. Rebecca Kowaloff: This is actually a new thing for me, but I think it will become something I do more regularly. I've always enjoyed writing. I was a history major in college. I loved writing papers, but more creative writing is new to me. But since I started my current job and went into full-time palliative care, I've just been struck by some patient stories and found myself sitting on my computer after seeing them, and these stories just poured out.

Dr. Lidia Schapira: And when you talk about patient stories, I imagine those are patients that you've cared for, or are you referring to writings from patients, what we generally call illness narratives? 

Dr. Rebecca Kowaloff: No, patients that I've cared for. 

Dr. Lidia Schapira: And how do you think that understanding the story of a patient can inform the work that we do and how we teach our trainees? 

Dr. Rebecca Kowaloff: That's a good question. I think that we sometimes lose a patient's humanity when we're caring for them and their disease and getting caught up in treatment options. And I think remembering that they have a story, that they are an individual and not like any of the other patients who might have had a similar diagnosis, helps us bring back to giving them the best care, but also, I think, brings us back to why we went into medicine. And that's what I try to pass on to trainees that I work with. 

Dr. Lidia Schapira: That’s so important. So in a way, it's connecting with or rekindling that sense of vocation, and that has to do with being of service, but also being attentive to the humanity, our own as well as that of patients.

Dr. Rebecca Kowaloff: Exactly.

Dr. Lidia Schapira: Have you recently read any books or stories that you found particularly impactful or that you would want to share with colleagues?

Dr. Rebecca Kowaloff: Yes. As I thought back to some of the books that I've particularly enjoyed recently, I think that that sense of story and the story of maybe the common person or I really like historical fiction, so characters that are in textbooks, that are sort of uni-dimensional, being brought into a more three-dimensional arena, are ones that I'm really drawn to. I really liked City of a Thousand Gates by Rebecca Sacks, which looks at the Palestinian-Israeli conflict through multiple lenses and really challenges readers to see multiple perspectives. And I think that's something that I'm really drawn to in the books that I like. Another book that I really enjoyed was called The Five, and it was a look at, actually the five victims of Jack the Ripper, but looked at their lives and who they were as people. Something that I was embarrassed to say I hadn't really thought of before, but I found it fascinating not just to learn about them, but to really think about, they had their own stories, and instead they were caught up in this larger narrative. 

Dr. Lidia Schapira: Let's turn our attention to the essay that you beautifully wrote and said and has a title that I think needs to be unpacked a little bit. So let's just start with your choice of title. It mentions ‘labor’, and there's a strong theme in the essay of the labor associated with childbirth, but also the labor associated with losing a child. And you bring in your personal experience of motherhood. And then the other important word in the title is ‘love’. And that doesn't often appear in a medical narrative. So tell us a little bit about how you came to put these two words together and present them in the title.

Dr. Rebecca Kowaloff: I've always been struck by the way that birth and death mirror each other and that on either end of those is this unknown we come from, wherever we come from, into consciousness, and then we leave into another realm that we always are wondering what's on the other side. So they're both this sort of liminal space between whatever lies beyond and then this life. And then in this particular case, I was really struck by how I was seeing this case, particularly through his mother's eyes, and was able to, I think, really appreciate a level of maternal love that I hadn't before I became a mother myself and what that must have been like for her and feeling it a little bit myself by proxy. And then recognizing that in this particular case, I felt like she had known that this death was coming for a while. The way that pregnancy, you know, that there is a birth coming and then the labor is that separation of the mother and the child. And so I tried to kind of draw that out as well, but I felt like love was what I really felt permeating this case—felt for this patient. Again, sort of that maternal feeling, but also because we were similar in age, a feeling of connection on that level, and that love was really the biggest thing that I could bring to this—that I can't fix death, I can't fix loss, but just being present with love is something I can bring.

Dr. Lidia Schapira: I want to go back to that because you use the word love so organically and yet it's been a word that we've been reluctant to use in medicine. I think that there is no question that a mother feels love for her child, but the idea that a palliative care physician or an oncologist feels love for their patient is something that we don't often talk about and yet you're perfectly comfortable with that. So I want to ask you to tell us a little bit more about that because at least in my generation when we were trained, we were cautioned and perhaps even warned not to speak of love when we talked about what we felt for patients. And as a result, I think the medical literature is full of words like caring, but really the sentiment that we're talking about is love. And you very organically and normally basically say it like that and that you brought love to the bedside and that you felt love. Tell us a little bit about that. 

Dr. Rebecca Kowaloff: Yeah, I think you're right. We use words like compassion, empathy, caring because love is such a charged word. But I think if we can think of it as love, then it maybe becomes easier because we've all experienced love, I think, and hopefully felt love. It may be, again, give us that renewed sense of purpose to say that I just have to be a human being who feels love and that is something that comes naturally to human beings when we see others in distress or sorrow or whatever it may be. I think that makes maybe this work more accessible, more fulfilling. And I think it is what we feel and we just are afraid to use the word sometimes. 

Dr. Lidia Schapira: In this particular case, Rebecca, you also talked about identifying with a patient in so many different ways. You say, we could have been friends. So you talk about him as a peer, as somebody that you felt some feelings of companionship towards, and then you also talk about him as his mother's baby. And I thought that was really a beautiful and very original way of presenting the complexity of the feelings you had. You write in your essay that you normally don't weep or cry at the bedside, but there was something about this particular bedside situation, and Michael in particular, that led you to weep. Can you share a little bit of what that was like for you?

Dr. Rebecca Kowaloff: Yeah, I think I had been, as I say in the piece, thinking of this as his mother watching her baby die. And that is, of course, an incredibly emotional concept for any mother. And then when he came to terms with it himself, I think it was tears of relief that he was not accepting, but at least he was acknowledging, but then also in terrible sadness that here, indeed it really was happening and that she was watching that happen. I was glad that that came out, not only for him and his family to see that I was there with them in that emotional space, but it just felt very cathartic to let those tears that I'd been letting out in the car actually come out at the bedside but just also to know that that was possible for me to do. And that just felt very connecting to the patient and their family.

Dr. Lidia Schapira: And I imagine it might have even felt freeing for you in the sense that you bring your genuine person to the bedside and that you can allow yourself to connect and express your own emotions without that necessarily distracting them from their sorrow or drawing attention to you or in any way diminishing your expertise in that setting. 

Dr. Rebecca Kowaloff: Exactly. In palliative care interactions, I teach my trainees that if the people don't cry that we may not have gotten to the heart of the issue. And so I think tears are a sign that someone is their most naked, vulnerable self and that you know that you're interacting with them without any facade. 

Dr. Lidia Schapira: So tell us a little bit about how you, if I can use that word, either calibrate or regulate your emotional response to patients. You get called in to help families in very vulnerable and desperate situations. You use the word sacred. You use the word raw in describing what those situations are like. Tell us a little bit about how you prepare and what it takes to be fully present. 

Dr. Rebecca Kowaloff: I think I just walk into each visit knowing that I bring my presence and that that is perhaps what is most required of me, that I have no advice to offer or guidance, but really just being a human being who doesn't look away from suffering is what I'm probably going to bring most to every situation. And that's something that I just know that I can do. And I think that knowing that I can bring that and that I can look at death and illness and I have made it through with patients and that they appreciate that is what keeps me coming back and keeps me able to do that. And as I said at the beginning of the piece, I've always wondered, is it a coldness? Is it a distance? Why is it that I don't weep more often at the bedside? Why is it that I can just keep doing this work and it doesn't wear me down? And I think it's because my perspective on it is that it's so fulfilling and that it is sacred. I describe it as soul-fulfilling work. It's just my soul work. It is almost a transcendent spiritual experience to be able to convene with patients on that level and to be able to bring that level of humanity to the bedside when maybe that is something that they haven't gotten.

Dr. Lidia Schapira: I found the description of Michael's father and Michael's mother particularly compelling and how you handled their very different emotional responses to the inevitable passing of their very young and beloved son. Have you stayed in touch with the family? 

Dr. Rebecca Kowaloff: I haven't, and I've actually thought about that and wanted to actually share this piece with them. So I'm still deciding. I think I probably will. I actually did connect with a friend of theirs and I didn't tell her I'd written this piece, but I wanted to give them some space. This death only happened very recently, so I wanted to give them some space to process and I didn't want this to become about me or what I got out of it. I really wanted them to have the space to grieve, but I very much would like to reconnect with them.

Dr. Lidia Schapira: You share a lot about yourself in this essay and I think that's wonderful. And I'm curious to hear how you use these stories and your personal story when you teach your residents or when you interact with oncology fellows since that's sort of the world that most of our readers know.

Dr. Rebecca Kowaloff: I always try to be a person. You look at attendings and they seem like they know exactly what they're doing and they've been doing things forever. And I want my trainees to know what I wish I'd known when I was a trainee, which is everybody at every stage of medicine struggles with feelings of inadequacy, shame, fear, whatever it is, and that those are real and that's part of being a doctor and that having those actually probably makes you a better doctor. So I try to be really vulnerable with my trainees about what I'm going through, how I feel about cases, and then just really stress that what I bring is that humanity and that they can bring that too, and try to remind them to step away a little bit from their sort of medical brain. And that's important, but that what our patients are really going to remember the most, is who we were at their bedside. 

Dr. Lidia Schapira: There's an element of authenticity and genuine presence here that I'm picking up through your response to the questions but also in your writing that is, I think, quite exceptional. And that is to really also be able to share and be very open, not only self-aware but share with others that there's a huge amount of emotional labor that's involved in being with people who are so desperately ill. And you downplay your technical skills and give more importance to presence. But I imagine it's a sweet combination of both, am I right?

Dr. Rebecca Kowaloff: It really is. Yeah. I was drawn to medicine for the humanistic aspect, and that is what has kept me here and sustained me. But it is wonderful to have a breadth of skills and knowledge to bring to patients that we can be present, but we can also ameliorate symptoms and give them information to help them make decisions. So that's what I find so much joy in palliative care work because that is exactly what we do. We kind of hit all those aspects of patient care.

Dr. Lidia Schapira: And I wonder if you use stories in your repertoire when you talk to patients or when you teach your students. Do you sit with patients and tell them the story of another patient that you've cared for?

Dr. Rebecca Kowaloff: I actually haven't to this point, other than small snippets of anecdotes, I don't. But it's something that I think could be helpful in the future. 

Dr. Lidia Schapira: My last question to you, Rebecca, is what made you not just write the story but decide to publish it? I think there is a big difference between writing for ourselves when we are looking to process an experience and then really exposing our vulnerability and sharing it with colleagues and people that we don't know. 

Dr. Rebecca Kowaloff: I think for me, palliative care, there are so many misconceptions that its depressing work, that all we deal with is death. And I call this out in the piece that I spoke to Michael's soccer coach, and he said, it must be such hard work, I forget the exact words. And I thought back to all the things that I felt were really rewarding. And I think a lot of people might look at those aspects and say, that sounds so depressing, and you're dealing with dying young people. So I just really wanted to hopefully convey to the larger oncology community that there is fulfillment and enjoyment and reward and gratification in even the hard work and maybe especially the hard work. And that shying away from it, I think ultimately is self-preserving, but it doesn't lead to the fulfillment that you could feel as a physician and really a healer and that this is really healing work. 

Dr. Lidia Schapira: You make the point very clearly in your essay. I think that leaning into that distress and leaning into that sorrow actually fortifies us in a way helps us to get through it. And I would say that it requires some active work and also developing self-compassion, something that palliative care doctors know better than oncologists and we have a lot to learn from you. So thank you for the work that you do. Thank you for sharing your insights with readers of Art of Oncology and JCO. Any final message?

Dr. Rebecca Kowaloff: I just hope that the piece touches people in a way they think about palliative care and in a way that they haven't before, and hope it will inspire people to lean into those difficult patient interactions and derive something that they didn't expect to. 

Dr. Lidia Schapira: Well, thank you very much. It's been a lovely conversation. 

And for our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

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Guest Bio: 

Dr. Rebecca Kowaloff is a Palliative Care Attending at the University of Massachusetts.

Listen to ASCO’s Journal of Clinical Oncology essay, “At a Loss: Patient Deaths and Clinical Research Coordinators” by Dr. Hermioni Amonoo, a Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute. The essay is followed by an interview with Amonoo and host Dr. Lidia Schapira. Amonoo puts out a call for support for clinical researcher coordinators to manage grief after patient death in clinical trials.

TRANSCRIPT

Narrator: At a Loss: Patient Deaths and Clinical Research Coordinators, by Emma C. Deary, BA; Elizabeth Daskalakis, BA, Janet L. Abrahm, MD; Sue E. Morris, PsyD; and Hermioni L. Amonoo, MD, MPP (10.1200/JCO.23.00040)

As clinical research coordinators (CRCs) working on health outcomes research in patients with hematologic malignancies, we frequently navigate a patient’s chart to coordinate study appointments and collect clinical information. When opening a patient’s electronic health record, a snapshot immediately appears on the screen with the patient’s medical information: demographics, problem list, medical history, allergies, medications, and so on. However, there are times when the chart does not open immediately, and our stomachs drop. A small gray pop-up box that we know all too well reads: “You are opening the chart of [patient’s name], who is deceased. Date of death: [date].”

We dread that pop-up box. We feel shock, followed by profound grief for the patient and their loved ones. The three words in that one sentence pack an irreversible reminder that our workplace, the place we love, is the same place in which patients and families can experience their worst nightmare. Every time we wait the seconds it takes a chart to load, we hold our breath, hoping that box does not appear. CRCs, sometimes referred to as research assistants, conduct the day-to-day activities of a research study.

In human subjects research, this often means performing chart reviews, calling patients to administer surveys, meeting them at clinic visits, or talking to them about different aspects of their treatment and recovery. CRCs like us are typically young, early 20s professionals, who recently graduated from college and are still trying to figure out their career aspirations. We may have previous research experience working in undergraduate professors’ laboratories on organic molecules or with student research participants. Aside from volunteer experiences, we usually have not had professional interactions with seriously ill patients.

CRCs are the people patients associate with the research study in which they have enrolled. Through frequent study check-ins and phone calls, we build relationships with patients and often chat about nonclinical matters. Patients tell us about their children, grandchildren, pets, daily life, hobbies, and work. The more we meet with study patients, the more we learn about the intricacies of their lives: how they met their spouses, how much they miss seeing their families, and what they love about their hometowns. Even after only a few encounters, we form strong bonds with many patients from a wide variety of backgrounds. As we follow them along their treatment journey, we find ourselves fiercely hoping the treatment works.

When a patient dies, we cannot help but think of their life partner, husband, or wife, the friends they will never see again, their children, and their grandchildren. We remember their hobbies and the thoughtful ways they greeted us before appointments. We remember the numerous phone calls we made to remind them of our meetings. We remember the days they were smiling ear to ear under their masks and the days they felt so sick that they could not pick up their heads to look at us.

As CRCs, we do not communicate with patients outside the study. We are not their doctors, nurse practitioners, or anyone who has direct involvement in their care. But, we accompany them as they ride the highs and lows of cancer treatment. So, after a patient dies, we often struggle to understand our own emotions and what role we played in their lives. We record their death for the study and are expected to move on, seamlessly, after discovering someone has died. Our role as CRCs may be tiny compared to those of other providers, yet each patient’s death has a profound impact on us.

We recall the first time we learned that one of our patients died. We became motionless at our desk, distracted and unproductive for the remainder of the day as our thoughts returned again and again to that unexpected warning box. We were hesitant to even speak to each other about how we felt. Thoughts of “I should not be feeling this upset” and “maybe I am overreacting” blocked us from processing or trying to understand our grief. These thoughts were isolating, and we were unaware that many of our colleagues could help us share this burden.

Knowing that patients with serious illnesses die did not protect or prepare us for the waves of emotion we experienced when a patient in our study died. Some of us have had personal losses after which we also thought: “Maybe I do not have the right to be upset”— a childhood friend we are no longer close to dies, or we learn that a good friend has had a miscarriage—and our grief is confounded by our feelings of guilt. We experience disenfranchised grief1: grief that is not openly acknowledged, socially accepted, or publicly mourned. For us, there is no place to grieve with the patient’s family or the clinical care team.

Over time, our grief builds up, and it is hard to find a way to release it. Friends and family do their best to understand, but because they do not work in health care, they can find it difficult to grasp the complex emotions we experience. We seek solace with each other, but lacking coping mechanisms or clear direction, we ultimately bury our grief to continue doing our job.

Oncology and palliative care clinicians routinely care for seriously ill and dying patients. To learn how they deal with their grief, we asked our Dana-Farber Cancer Institute study principal investigator and three palliative care clinicians (two physicians and a psychologist, who is a bereavement expert) how we could begin to process our otherwise disenfranchised form of grief. We learned that Dana-Farber Cancer Institute palliative care clinicians hold weekly bereavement rounds or remembrance2: a time carved out every week to read a poem or listen to a song and then share meaningful stories about each patient who touched their lives and had died that week.

We adapted the bereavement rounds for our laboratory group of CRCs and principal investigators. We spoke about each patient we had lost, sharing the things that most affected us over the course of our interactions with them. We spoke of Jack (names are changed to protect patient identities), who was beloved by everyone in the clinic. His hearty laugh could be heard throughout the halls whenever he came in for a visit. On the last clinic visit before he died, Jack’s appointment was delayed, and he sat in the waiting room for over an hour. When we offered to help find him a room, he stood up and offered a hug in gratitude. The memory of such a seemingly routine request stayed with us for weeks after his death. When we spoke about Jack and his family during these bereavement rounds, we were able to share the wave of grief that overwhelmed us, that grief we had kept suppressed for over a year. We also shared stories about James (names are changed to protect patient identities) and his wife; they met in college and had been together for more than 50 years. Throughout his treatment, James told us often how upsetting it was that his immunosuppression prevented him from spending time with his grandchildren in person. Our hearts broke thinking of his wife and the reunions with grandchildren that would now never happen. Surprisingly, speaking about patients in our studies who died felt like a welcome release; finally sharing these memories and the worries we had harbored since each patient’s death was restorative.

Bereavement rounds have been invaluable in processing the grief we experience throughout the year. We found ourselves wishing we had known of them sooner, although it would be hard for CRCs who do not work with palliative care programs to be told about them. Through our quarterly bereavement rounds, we have learned to foster healthy grieving processes, creating time to honor each patient and acknowledge their impact on us.

This investment in our health and well-being has been crucial to maintaining resilience in the face of challenges that our job entails. We feel cared for by the larger program and know it is investing in us as whole people. Our professional development now extends beyond Health Insurance Portability and Accountability Act training and Collaborative Institutional Training Initiative certification to include education in bereavement, burnout, self-care, and compassion fatigue. Direct supervision and mentorship around grief and loss incorporated into our routine check-ins and meetings have been helpful, as well as an open door policy with our supervisors for informal support. We frequently debrief in response to challenging interactions or situations, including the death of a patient.

The designation of this safe space has emphasized a culture of support in our team settings. Learning to lean on each other when faced with emotional experiences has become a core aspect of sharing regular study responsibilities, especially when a patient dies. One practical strategy which  has helped us is going on a grief walk. After learning of a patient’s death, we stop work and take a 15-minute walk, either alone or with a colleague. We give ourselves the space and time we need to begin our grieving process.

Losing patients is part of our job as CRCs, as it is for many health care providers. Implementing programs and routines to understand and lessen the emotional burden on us has helped us better navigate our duties while fostering the coping strategies we need to do our job well. We want to learn and to immerse ourselves in academic medicine, and to do this, we need the support of our research team and institutions if we are to navigate the grief we feel when our patients die.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today we are joined by Dr. Hermioni Amonoo, Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute. In this episode, we will be discussing her Art of Oncology article ‘At a Loss: Patient Deaths and Clinical Research Coordinators’. 

At the time of this recording, our guest has no disclosures. 

Hermi, welcome to our podcast and thank you for joining us.

Dr. Hermioni Amonoo: Thank you, Dr. Shapira, for the warm welcome and introduction.

Dr. Lidia Schapira: Let me start our show by asking this very broad question, and that is how did this article come about? We normally have first-person reflections in Art of Oncology, but this is a group reflection pulled by collective first-person plural, and clearly, you played an important role. How did this start?

Dr. Hermioni Amonoo: So as you know, my line of research is trying to understand the well-being needs of patients with hematologic malignancies who are undergoing hematopoietic stem cell transplantation. So this is a really seriously ill group of patients who we are trying to understand what well-being looks like for them in the midst of a serious illness and quite intensive treatment with several toxic side effects and a prolonged recovery. And so in doing this work, unfortunately, a lot of our patients, even in our trials, pass away either from their diseases or complications from the treatment. And so I have noticed over the past few years that a lot of my clinical research coordinators who are young, 20-something-year-old, freshly minted college graduates, who are very critical to the work that we do, have to grapple with the loss that comes with working with our patient population. A lot of these individuals take on these clinical research coordinator roles because they want firsthand experience with patients, but that is one thing. But then working with patients who you bond with, even from mundane conversations, and then having them die was a huge sense of loss and frankly, a bit of a surprise for them. 

And so, as a psychiatrist, used to sitting with people in grief and helping them reflect different losses that they encounter, but I quickly realized that supporting my CRCs was a little bit more than even what my training had prepared me for and definitely, my training as a researcher hadn't prepared me adequately to be able to support these young clinical research coordinators. And so in our struggle, or I would say I've had a burden for this for several months, I would say a couple of years now. And so one of the ways that I struggle, I manage different burdens is to write about it. So I sort of shared the idea with my clinical research coordinators, a couple of them now, and they really caught on to the idea. And so we decided to share what our experience has been with this. And then I also reached out to a couple of colleagues in palliative care and the director of bereavement services at our cancer center to also support us, or support me to support our clinical research coordinator. So that's sort of how this idea came about. And that's a really long-winded response. I'm sorry.

Dr. Lidia Schapira: It's so interesting to think about this, writing as a tool for processing a difficult experience is something that we often discuss with our authors for first-person narratives. What makes this entry and this essay so original, in my opinion, is that this is a group effort and you have so beautifully spoken about the need to, especially for these very young 20-something-year-olds, to process this very difficult experience of grief. And in addition to this manuscript, you speak here of doing this through some form of bereavement rounds, something that you've taken from a clinical setting where we find that it helps support people working with patients who are very ill and who experience a lot of losses to the setting of a research lab. Tell us a little bit about how that idea came about, how you're implementing this very original and useful tool in your own group.

Dr. Hermioni Amonoo: It started out with, before instituting what we call remembrance rounds, my CRCs would typically call me whenever they heard of a patient's death. They will literally call my cell phone, I'll stop everything and sort of take a moment of silence with them and ask them how they were doing and check in via supervision and things like that. But it definitely felt inadequate considering the amount of pain that they experienced with the whole process. And so our palliative care teams have this remembrance of bereavement rounds every week. And obviously, on a palliative care service, they have a lot of patient deaths per week where pretty much every clinician on the team would get together for half an hour to an hour. You have different members leading these rounds where someone will share about a patient who had passed away, a memory or something about the patient, and the whole group will reflect on it. 

For our purposes, we thought it would be great to adapt that for like a lab setting. Fortunately, we don't have a huge volume of patient deaths per week but we realized that a month or every three months we would have close to between five to ten patients who would die from our trials, which is, again, a lot. And so, in conversations with our Director of Bereavement Services and our palliative care colleagues, we picked that time frame every quarter to get together as a lab where the names of patients in our trials who have passed away would be shared. And different members of the team who have interacted with a given patient will share, like a memory, either from a conversation, a poem, or a song, or something that brought to life the individual as a way to just process and acknowledge the loss that comes with losing patients. And I think it's also even more critical in the lab setting because, unlike the clinical setting where there is some form of a closure because as a clinician you may be able to call the patient's family and you sort of have permission to do that. But in the research setting, my CRCs felt like once they recorded the patient had died, they had no business in calling family members or doing anything like that. And so it was helpful to create the safe space to process all of that. 

In addition to the remembrance rounds, we also arranged with our bereavement services in the cancer center where there are actually cancer center bereavement cards where clinicians could write notes to families. And so our CRCs have started doing that as well, where we could use the cancer center template and if they wanted to, could write a note to the family as a way to share how they were feeling about the situation with the families as well. So that is something that in addition to bereavement rounds, we started doing which is also helpful.

Dr. Lidia Schapira: I was very moved and I was very struck, as were the reviewers, by a few things in your article. One, is that you take responsibility for supporting your research assistants. Two, is that you take on what I will say is an almost mentorship role for helping them process this in a way that sort of still leaves them engaged with the content material and stimulates their growth as professionals. And hopefully, some of them will be future medical students, physicians, and maybe even oncologists and psychiatrists. In fact, our reviewers wrote that after reading your paper, they had implemented similar protocols in their own labs and that's pretty amazing. So tell us a little bit more about how your efforts, you think, contribute to creating a more supportive culture in general in our workplaces, both in the lab and research setting, but also this translates into clinical settings.

Dr. Hermioni Amonoo: So I think maybe more so than others, I see my clinical research coordinators as really critical partners in the work that we do, especially in clinical research. They are the face of the trials that we do in some ways. They meet all our patients who are eligible for our studies. And they do spend a lot of time with them, especially in the longitudinal studies that we do, where there are multiple assessments. They are calling patients, they are speaking with them in waiting rooms, and they are really essential to a lot of things that we do. When I think about how much we compensate them monetarily wise, it really isn't a lot for really talented college graduates. And so I think, for me, I view an intangible way of making this whole experience worth it, based on how much they contribute to my research program, is to really mentor them. I think as an individual, mentorship has been very critical to my own career development, and working and mentoring CRCs is one way that I pay it forward.  

And I think because that is very much a part of our lab and our team culture, the CRCs are also willing to go above and beyond and really contribute to the work that we do. Because there is so much that as a principal investigator, you can't always be with them 10 hours in the day that they are working. But when you really get them to latch onto the heart of what you're doing and knowing that they are also going to grow professionally and explore different things about medicine, in general, has been really rewarding. In fact, I've had research coordinators who came in thinking they wanted to do Ph.D. in psychology programs, but then in interacting with patients, they have expressed interest in potentially pursuing nursing. I have a CRC now who came in thinking one thing and is going to nursing school this summer. And so I think there's really a great opportunity to expose them to the breadth of clinical experiences like in medicine. And one way to do that is to be intentional about looking for opportunities to allow them to see things beyond what they even thought they wanted to gain out of the experience because we can't pay them as much. 

Dr. Lidia Schapira: Let me tell you that after this podcast you will be getting emails from people who want to work with you. It sounds like you're an ideal mentor and so collaborative and so generous in your mentorship. It's amazing. I was also thinking, as you were speaking about the people involved with patients and families who are struggling through very difficult times and die, some of our staff, not the ones involved in research, but the people who book appointments and get to know the patients and listen to their stories, they also need a place to grieve and they need to be notified when patients die. And most of us don't have sort of a system or a process for thinking about that, and maybe we should, taking a page from your playbook here of thinking about all of the people who interact with patients and all of the people who are themselves impacted by what happens to these people we take care of and many of whom are so generous as to participate in our research studies. So let me end with a forward-looking question and that is do you have, as a researcher, any interest in studying this?

Dr. Hermioni Amonoo: Again, thank you for your really generous and nice comments about the mentorship. And I totally agree with you that there is definitely room to care for a broader range of our clinical team, not just people who have hands-on clinical duties or interactions with our patients. And I think it's even more pertinent in these times post the COVID pandemic, where a lot of individuals who work in clinical settings and again, COVID being the great revealer, it sort of uncovered how a cross-section of hospital staff are really impacted by different difficult things that happen in the hospital. So I think there is a lot of room to even look at how different staff manage loss and grief of patients. And patients dying is just one form of loss that we all have to grapple with as clinicians. But I think it's an area that a lot of people haven't even considered before, and I think there's a lot of room to study the impact of some of the things that we are doing in a research setting. I am open to that. I would need collaborators to do that, because to be able to do it well, I think it's not like an area of expertise yet. I feel like I am growing in this space myself, which was part of the impetus for reflecting in this perspective. I know the director of bereavement services has also been open to extending this to other labs in our cancer center and so I am totally open to that. And if anyone is interested in exploring this in a more rigorous and robust way, as it does deserve, I think I'm open to collaborating with others to pursue this to its fullest. 

Dr. Lidia Schapira: That's good for all of us. And my last question, Hermi, you've been so generous with your time, is this: if you look back or think back about your early days, your formative years as a student, or maybe if you also worked as a research assistant, did you have a mentor who took the time to listen to how these experiences were falling on your soul? Not just whether or not you showed up for work every day, but how you were thinking about this and taking stock of your own losses.

Dr. Hermioni Amonoo: So yeah, I think I have had a village of mentors who have been really invested in me as a human being first beyond work-related interest, and I think that has been really instrumental. And I think my mentors have had to explore some of these topics with me because of my own personal losses and I think having family deaths over the course of my training. And so I've been really privileged to be a beneficiary of mentors who really focus on helping their mentees grow. Not just in a technical way or a career development or professional sense, but really being attuned to how much, for lack of a better word, someone being well in their soul and in their mind, really is interconnected to how well they do professionally such that you don't burn out or lose the sense of joy in the things that we are doing. So I've definitely been a first-hand beneficiary of that, and my psychiatric training probably also makes me a little bit more attuned to those things than probably in other fields of medicine.

Dr. Lidia Schapira: Well, thank you for a wonderful conversation. Thank you for the work that you do and for sending your work to Art of Oncology, the JCO. So until next time, thank you all for listening to JCO's Cancer Stories, The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO shows at asco.org/podcast.

 The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. 

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

 Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio: 

 Dr. Hermioni Amonoo is a Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute.

Listen to ASCO’s JCO Global Oncology's essay, “Capturing Memories for Children with Cancer in a Low-Resource Setting” by Dr. Allison Silverstein, an Assistant Professor at the University of Colorado School of Medicine. This Art of Global Oncology essay is followed by an interview with Silverstein and host Dr. Lidia Schapira. Silverstein shares her launch of a framed picture legacy project in Malawi for those with childhood cancer in a low-resource setting.

TRANSCRIPT

Narrator: Capturing Memories for Children With Cancer in a Low-Resource Setting (10.1200/GO.23.00001)

I was the paparazza, capturing salient moments from our program’s “Palliative Care Day” where children with cancer and their guardians played games, completed artwork, sang and danced, and enjoyed meals together.

It was a precious day for these children with life limiting disease to shed the weight of their diagnoses and instead share laughter and joy with one another. As a pediatric resident on a global health year in Malawi, I was invited to document our team’s activities with the intent to share with potential donors. However, with a click of the camera’s button, I realized the opportunity for an unintended greater impact. I scrolled through the day’s pictures and could not help but think the recipients of the pictures should not be strangers, but instead the families or even children themselves. Although families had already provided consent for each picture, they never expected to see them.

Pictures capture moments in ways words cannot describe. Coming from a Western society where we celebrate and honor life in pictures, I wondered what happens when you do not have a camera or phone capable of capturing these events. What visual memories do you have when your child dies? Does it feel differently when remembering a lost child without pictures to look at? Do vivid memories fade and, in time, make it difficult to imagine your child’s face?

As I reflected on this, I acknowledged the overwhelming frequency of childhood cancer death in our setting—in contrast to a .80% survival rate for childhood cancer in the United States,1,2 the childhood cancer mortality rate is estimated to be as high as 90% in sub-Saharan Africa.3 Most of these children present with advanced disease, where disease directed treatment is less likely to be effective,4 and limited availability of medical and supportive care further contribute to poor outcomes. 

Although progressive medical infrastructure has sprouted across regions of sub-Saharan Africa to help address these disparities, widespread gaps exist in interdisciplinary services. Families of children with cancer face substantial psychosocial, emotional, and spiritual distress. Many families are fortunate to have robust community support, but we must consider how we, as a medical system, can further support families. Our role includes providing comfort to families, especially when curative medical therapy is not an option and a child’s final days near. We must integrate humanities and holistic support for our families as we scale up global health programs, just as is already done in high income settings. 

So, when I set my camera aside, I earnestly turned to my local colleagues for their counsel. They grinned as they confirmed the potential value of my blossoming idea. I went to a nearby store where I printed the pictures and purchased basic supplies—glue, string, tape. We collected old boxes from prior hospital pharmacy deliveries and bought local vibrantly colored fabric—chitenje—from the market. From these materials, our first frame was designed. These local materials were obtained on a minimal budget.

I shared the first picture and its frame with our social worker who presented the aunt of P with the picture (Fig 1); P had leukemia and had died recently from complications associated with central nervous system disease. In his picture, there he was, coloring during the event we held a few weeks prior. He wore sunglasses and shared that smirk we had all quickly fallen in love with. As she graciously accepted the frame, the corners of P’s aunt’s mouth turned upwards into a rarely seen smile; she bowed her head silently as we spent a moment remembering P and sharing in his memory.

The next week, I had the privilege of joining our team on a bereavement visit to the home of B’s father. B had recently died at home and our team visited to provide grief support and share prayers together. We sat in a circle on well-worn couches and chairs as B’s father offered he did not have any physical belongings or keepsakes of his son beyond leftover medical supplies from home wound care management; any clothes or toys were passed along to other children and other families. As he shared with us, he removed a cloth covering their makeshift table to reveal a cardboard box, inside of which he retrieved these remaining medical supplies so they could be given to another family. We pulled out a framed picture of B that was taken before the program had formally started but was printed and framed just as the others. I watched as B’s father’s eyes welled up with tears in surprise and gratitude; he accepted the gift and stood to shake each of our hands.

One by one, we started taking more pictures. My colleagues explained the idea of the project as we obtained consent from each new family. Often we were met with a bit of initial skepticism but also willingness to participate. Pictures were taken away from the crowded medical wards and instead in courtyards with benches, grass, and trees as possible. As we delivered the first batches of framed pictures to families, the skepticism was quickly replaced with enthusiasm, and families embraced the program. We could not seem to print consent forms fast enough, as caregivers changed outfits, brushed their hair, and sought us on the wards to request portraits. They claimed their pictures like prizes. Some of the children lived to see them. Others died.

The picture project served as emotional support for families, most of whom had or would lose their children. In time, the program transitioned from volunteers constructing frames to caregivers themselves making the frames together; they sat in open green spaces and connected, providing an organic social support system for one another. 

With the start of the COVID-19 pandemic, I returned to the United States to continue my training, and my colleagues in Malawi faced new challenges of their own. Just as staffing shifted at my home institution, so too were modifications made in Malawi to optimize patient and team safety. Although our framed photograph program paused similarly to many supportive care programs across the world, months later, my colleague shared a picture with me: a group of caregivers gathered on a lawn, a pile of frames and photographs scattered on the ground, the program restarted, and the memories being created and shared once more. 

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today, we are joined by Dr. Allison Silverstein, an Assistant Professor at the University of Colorado School of Medicine. In this episode, we will be discussing her Art of Global Oncology article, ‘Capturing Memories for Children with Cancer in a Low Resource Setting’. 

At the time of this recording, our guest has no disclosures. 

Allison, welcome to our podcast, and thank you for joining us.

Dr. Allison Silverstein: Thank you so much for having me.

Dr. Lidia Schapira: Allison, your essay captures an experience that you had when you were working in Malawi as a medical resident or pediatrics resident. Tell us a little bit about that.

Dr. Allison Silverstein: Thank you. I participated in a four-year pediatrics global health residency where I completed three years of my residency in Houston, Texas, and one year of my residency abroad, working clinically in Lilongwe, Malawi. During that time, I split my time working with children who have HIV, as well as working in the pediatric hematology and oncology wards, both inpatient and outpatient.

Dr. Lidia Schapira: Where did your passion for global health start, and where is it now? Where is it taking you?

Dr. Allison Silverstein: I think I have always had a love of traveling and experiences, learning about new cultures, meeting new people. And when I was in medical school, I participated in a one-week more voluntourism-type trip, admittedly. And I remember handing a woman who had rheumatoid arthritis, like 30 pills of a medication, and leaving that encounter and feeling just gutted that either these medicines would work and in 30 days, she wouldn't be able to get more. Or they wouldn't work, and she wouldn't be able to follow up to try and help relieve her symptoms. And I came back from that trip and was just really excited to engage more in really sustainable practices. And so I've spent about two years cumulatively living abroad in a few different countries in Africa, and that has cultivated a passion for global work in terms of capacity building and policy, done some research, and then more recently, really engaging on a clinical level. 

Dr. Lidia Schapira: What was it like as a medical resident and practitioner in Malawi?

Dr. Allison Silverstein: Gosh, I miss that time so much. Every day I was excited to go into work, and I felt this just passion and, truthfully, a personal value that I was a part of something really meaningful. I worked with just a group of incredible humans in all sorts of different disciplines, and being able to learn together and grow together was amazing. It was admittedly also scary at times. I was a resident and had to really acknowledge my limitations and what my comfort level was, coming from a very different setting. But I think I really ultimately embraced that and grew a lot throughout that experience.

Dr. Lidia Schapira: So, in your essay, you describe meeting kids and families with cancer and introducing to them some new ideas. Tell us a little bit more about that.

Dr. Allison Silverstein: I had a pretty decent camera, very point-and-shoot, knows more than I do about how to take pictures. And I remember participating in what we were calling a palliative care day, where children from their community and their families, as well as some within the hospital, were able to come and just create joy altogether. There was singing, there was dancing, and someone had asked if I would take some pictures to share with potential donors for the program. And, of course, I was ecstatic to get to join and be a part of things. And as I took pictures, I looked at them, and I just had this kind of an aha moment of this blossoming idea that the recipients of these pictures should really be the children and their families. Knowing that most of the children, especially the ones who were there for that particular day, ultimately would die. I approached a few of my Malawian colleagues who were so excited about this idea, and together we put together a project that I think we're all really proud of, as it has continued for now a few years and has impacted a lot of families.

Dr. Lidia Schapira: Talk a little bit about this idea of memories and having a photograph that helps families who are grieving keep that memory of their child so present.

Dr. Allison Silverstein: I think in general, in Western societies, within my family and my friends, pictures are such a common way to pay respects and to remember people. When I'm feeling nostalgic, I go through old pictures. I've lost all four of my grandparents and I'll look back at pictures that we took together and it just brings up a lot of memories and a lot of joy of the time that we spent together. With social media, people will post pictures of their loved ones after they die, and I think that's such an ingrained part of how we grieve and how we process during bereavement. And the idea to me that someone might not have a camera phone or a camera and therefore might not have any pictures of their loved ones when they die. That concept, when I first thought of it, very much shook me. It rattled me to my core thinking about how meaningful and important those things are for me. And it's such a small, simple thing that we absolutely take for granted.

Dr. Lidia Schapira: When we think about resources and disparities or inequities in care, we don't usually think about it at this very granular level. I'm curious to learn a little bit more about how you develop this concept and transformed an idea into really a project and then how you got the project to continue even after you left Malawi.

Dr. Allison Silverstein: It's a great question. I think in global work in general, it's really important to be intentional about surveying your community about what the needs are and not projecting from your internal opinions what those needs are. And so, of course, I took this picture, and there was this light bulb moment for me, and then I asked myself to step back and say, "Hey, is this truly meaningful? Is this truly valuable? And how can we create something that is sustainable?" 

So I asked multiple Malawian colleagues who kind of have different roles or disciplines on the team and said, "Hey, this is what I'm thinking. What do you think? What are your ideas?" And really work collaboratively, knowing I have different perspectives and resources and experiences, and we need to really make it, not me coming in and projecting those things. And so ultimately, everyone was very excited about this idea, and so we started tinkering with a design. Luckily, there was a Kodak store right next to where I got my groceries, and so I was able to print some photos very easily. 

And then in Malawi, there's something called Chitenge, which is this beautiful fabric that people will wear, and it will become different articles of clothing, and you can get yards of the fabric very inexpensively at a market. And so I took some scraps that I had and went to the pharmacy and got some cardboard boxes that were left over from prior delivery. So I was really trying to think about things that would be very low cost and repeatable and ultimately designed the first frame. After we had created this first prototype, we internally, the direct members of the team, were the ones who were making them initially, and we started training volunteers in the hospital. And ultimately, the current iteration is that guardians make their own frames, so they sit on a lawn together, and it serves as this opportunity for them to connect and share and serve as kind of a psychosocial support. 

This project, we started it towards the end of my time in Lilongwe and with COVID in March of 2020. I was not prepared to be coming back to the US. I was supposed to remain abroad for another month. And I remember getting a call saying, "You need to leave before there aren't any more flights." I said, "No, I can't. I haven't handed off this project yet." And so I met with our team. I created step-by-step instructions on how to make the frames and how to use a camera. They thankfully had a digital camera that they had used for some clinical work previously, and so got those nuts and bolts in place, and then I left. 

And it was about six months before I received a WhatsApp message from the social worker in Malawi saying, "Your dream lives on." I was at the airport. I don't remember where I was flying, and I just started crying. Because this was a project that I thought was valuable, and it was a project that I had engaged with colleagues and felt like they also thought it was valuable. But I wasn't sure until that moment that I received that message how meaningful and valuable it was perceived from the team and the families who were there.

Dr. Lidia Schapira: Such a beautiful story, and I'm so glad that you chose to write and share it with your colleagues and that we were able to give it some exposure in the journal. I wonder if you can share with our listeners what other projects you might be involved with, now, again, thinking globally.

Dr. Allison Silverstein: I am continuing to do some work with the team in Malawi and in Houston on a global scale. I did my fellowship training at University of Tennessee Health Science Center in Memphis and have done some global work with the team at St. Jude. And I’m now getting established in my new role at University of Colorado. And our pediatric palliative medicine team is exploring our ‘what's next’ in terms of being leaders within the global health world. And so a lot of little things in progress and trying to figure out what's next.

Dr. Lidia Schapira: What opportunities do you see for collaboration in the area of global health, especially global palliative medicine and oncology, the global health infrastructure?

Dr. Allison Silverstein: The global health infrastructure is rapidly evolving. Even since I finished medical school until now, I've seen changes in resources and in opportunities, and it's really inspiring to see. A lot of that focus is on those medical interventions, and I think there's a lot of opportunities to think creatively how we can support families beyond just kind of curative or palliative treatment, beyond the medications, beyond the surgery, and think from a very holistic level of involving multiple disciplines and supporting families along their whole journey.

Dr. Lidia Schapira: I wonder if during your time in Malawi and through this project of capturing the photos, framing, and then presenting them to families, you had any personal connection with members of families and if you can share with us perhaps some of their reactions or what they said to you. 

Dr. Allison Silverstein: I very much tried to be a support system for this program and not the face of this program, and so I tried to take a step back and empower my colleagues to really have an active role in the execution and the vision itself. I shared a couple of meaningful encounters in my narrative. I think one of the really special stories I have actually doesn't directly involve me, but I mentioned that I stay in close touch with a social worker in Malawi. And she recently went to a home for a bereavement visit after the passing of a child. And when they entered the home, there were three frames on the wall with pictures that they had taken while the child was alive. And seeing that picture, seeing that moment that the family had recognized the value and taken the initiative to not only accept and embrace these pictures and their frames, but to hang them in their home. That was a really special moment for me.

Dr. Lidia Schapira: It sounds like it's been a very moving experience, very meaningful for you. And I wonder if you can reflect a little bit on how this experience perhaps has changed the way you think about palliative medicine and pediatrics.

Dr. Allison Silverstein: I think I have realized how much of our role in medicine is about the little things and recognizing that the little things to me might not be little to someone else. And so taking that moment to listen and to hear a family's needs and think creatively and problem solve, no matter what they are articulating, this is something that I really try to practice both in my role in Denver and as I think of other roles that I fill and will grow into. And this project has really helped me frame some of my work in terms of those little things, as well as really enhanced my personal practice of gratitude and appreciation for the little things in my life.

Dr. Lidia Schapira: Allison, thank you so much for your words, your wisdom, and the work that you're doing. I hope you continue to be inspired and creative, and I look forward to connecting in the future.

Dr. Allison Silverstein: Thank you so much for having me today and letting me share about this project and my passions.

Dr. Lidia Schapira: Until next time. Thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe, so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. 

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. 

Show Notes:

 Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio: 

 Dr. Allison Silverstein is an Assistant Professor at the University of Colorado School of Medicine.

See another article in the JCO Global Oncology, Art of Global Oncology section:

Yuan Fen 緣份

Listen to ASCO’s Journal of Clinical Oncology essay, “First Cousins Once Removed” by Dr. Matthew Farrell, a radiation oncology resident at UCLA. The essay is followed by an interview with Farrell and host Dr. Lidia Schapira. Farrell paints scenes of how different family dynamics can come into play when advocating for patients.

TRANSCRIPT

Narrator: First Cousin Once Removed, by Matthew J. Farrell, MD, MFA (10.1200/JCO.22.02611)

 When I was a kid, long before I wanted to be a doctor or had even heard of oncology, I dreamed of becoming an actor. I grew up in Sacramento—not exactly the beating heart of the film industry—but my mother’s mother lived in Santa Monica and we would stay with her for a month every summer. My father would unashamedly sneak me into movie premieres in famous theaters, and he bought us season passes to Universal Studios Hollywood. Despite having a serious job—as a psychologist in the emergency department—he was a kid at heart. Los Angeles was our promised land, and our shepherd was my father’s cousin John, my first cousin once removed, who lived in West Hollywood and was a living, breathing actor.

 John wasn’t famous, not yet. He was in his late 20s, just starting out, doing mostly background work and some commercials while working as a waiter at the original Cheesecake Factory in Beverly Hills. All the staff loved him there, so much so that they would give us free pieces of cheesecake just for being related to him. John was generous, outgoing, expressive, and talented. Success seemed just around the corner.

 One challenge for him was his voice. He had a thick Bronx accent, which would have been perfect if he had been auditioning for Raging Bull but which otherwise narrowed his prospects. He hired a voice coach to help him erase his accent. But that didn’t mean he was trying to erase his New York roots. He was proud of his upbringing and family, coming from a long line of police officers, burly men with strong jaws and thick arms and outdoor voices who seemed to be the very genesis of their own stereotype. And as his Bronx accent faded, he was teaching it to me. He said he would take me to a baseball game at Yankee Stadium one day, and he imitated the beer hawkers who walked up and down the aisles, calling out to the crowd, “Get your beer here,” but pronounced, “Getcha bee-ah hee-ah!”

John was the first person I distinctly remember being in perfect shape. He was a sight to behold—muscular and solid, yet graceful and light on his feet. In addition to being an actor, he was training as a dancer. Coming from generational athletic ineptitude myself, I was enthralled. He taught me how to moonwalk and do bicep curls. I would walk up to my mother and flex my tiny muscles, imagining a day when I would be as strong as John.

One summer, John was much thinner—his face hollowed out, his previously bulky arms as lean as my own. What I only vaguely understood at the time was that he was gay, and he now had AIDS. This was the mid-1990s, and highly active antiretroviral therapy was on the horizon but just out of reach.1,2

His treatments failing him, he became desperate for a cure. He did twice daily coffee enemas, choked down repulsive herbal concoctions, and visited New Age visionary healers. For a long time, he remained optimistic. He was in constant contact with his agent, seeking out auditions even as his strength waned. He wasn’t only a waiter at The Cheesecake Factory and he wasn’t dying of AIDS; he was an actor who was going to be healthy again soon. Occasionally he would call my dad, buoyant with hope, “The virus is gone. I’m cured.”

 Of course, he wasn’t. My father never tried to talk John out of pursuing alternative therapies, though he considered doing so many times. The frantic search for a reprieve from death can take us many places, and it is not to be pitied. But how do you also protect your loved ones from harmful remedies and predatory scam artists? How do you provide the best treatment when there is no good treatment? In all my years, all 10 of them, I had thought that doctors knew everything, and if you went to them, you would get better. But John wasn’t getting better. Together with his doctors, we embraced helplessness.

 His CD4 count fell to zero. He developed skin lesions from Kaposi sarcoma. He was repeatedly hospitalized with Pneumocystis pneumonia. His organs began failing. Ultimately, he decided to leave the hospital on hospice. It was only then that he told his parents he was gay and had AIDS. At first, his parents couldn’t believe he was gay. They told my father it was a phase, possibly brought on by his living in Los Angeles, a side effect of being an actor and dancer. Later, at his memorial service in New York, they would tell everyone he had died of a rare cancer. My father remembers someone asking John’s mother what kind of cancer it was, and she said, “I don’t know. It’s very rare.”

 During my winter break from school, my family visited John in his apartment. By that time, he had needed to quit his job at The Cheesecake Factory and stop taking auditions. His friends at the restaurant had thrown him a party and still came by his apartment most days. He lay in bed, drowsy and mildly delirious, too weak to stand. Even in this state, he kept trying to sit up to get us something to eat or drink. “I have cheesecake,” he said several times. “Let me get you some cheesecake.”

Just a week later, on the day after Christmas, John lost consciousness. His kidneys weren’t making urine, and he was uremic. My father urgently updated John’s family in New York. His mother, father, and three sisters with their husbands flew in that day and crowded into John’s small West Hollywood apartment.

 For the first time, they met John’s partner, Kevin, and five of their friends, gay men who had taken turns caring for John to make sure he was comfortable and never alone. Kevin was tall, elegant, and gentle. He was as introverted as John was extroverted, and he wouldn’t have been caught dead on stage in front of an audience. He ran his own successful small business and had a quiet self possession.

John, though he rarely showed it, was insecure about his slow progress in the acting world, and I think Kevin helped him feel more at ease. As a medical professional and the closest relative on the West Coast, my father had served as the point person for the hospice physician. He reported the latest news: John likely had just hours to live. John’s New York family, previously shielded by distance, was caught off guard. And there was an uproar. The five stages of grief multiplied to 25, occurring in no discernible order—undulations of shouting and crying and jostling that rolled through the group like The Wave through a baseball crowd. At first, they wanted to take him off hospice. They looked ready to carry him out the door to the nearest hospital. They said his decline was too sudden. It just wasn’t right. There must be something he hadn’t tried. For every desperate hope they volleyed, my father sensitively explained what could and could not be done, and, more importantly, he described John’s wishes. They gradually realized that saving him was impossible, and not what John needed anymore.

At last, everyone seemed on the same page. Everyone but John. Day by day, he held on in his unconscious state, not crossing that final threshold, as if something were holding him back. John’s family became increasingly exhausted, confused, and frustrated. They couldn’t eat or sleep.

On day four of John’s marathon survival, we called in the hospice nurse. By this time, my grandfather—John’s uncle— had also arrived. The nurse gathered everyone together and explained that it was often helpful to talk to your loved one, conscious or not, to say goodbye. People who are dying may feel obligated to cling to life for their family’s sake. They may need our permission, even our encouragement, to let go.

 And so, one by one, we all entered John’s bedroom, knelt beside him, and said what we needed to say. And then, it was my grandfather’s turn. By way of introduction, Grandpa Joe, my father’s father, was raised in the Bronx by a stern mother and career soldier father. He was a businessman by profession and by religion. He rose in the ranks of multiple companies, eventually becoming the president of Hires Root Beer, a company that expanded during his tenure but was eventually bought by Orange Crush, which in turn crushed Hires Root Beer and made a lifelong enemy of my grandfather. (In my family, we do not drink Orange Crush.) Grandpa Joe never surrendered without a fight.

 Accompanied by my father and me, Grandpa Joe marched up to John’s bed and bent down beside him.

 “You can fight this!” he said, shaking his fist. “I’ve had illnesses all my life and I came out on the other side. Did I let prostate cancer beat me? Hell no!”

“Wait, Dad,” my father said. “Wrong plan.”

“What?” Grandpa Joe said.

“We had a whole conversation about this.”

“When?”

“Just now, with the hospice nurse. We need to let go, allow John to pass on.”

“That’s not what I heard.”

“That’s becoming clear to me.”

 My father reviewed the plan, slowly, but no matter how well you explain yourself, sometimes people hear only what they’re capable of hearing. Grandpa Joe couldn’t surrender. He argued and fumed, eventually stormed out. So my father said goodbye for him.

That night, John died.

 I doubt the timing of his death was related to our collective send-off, but it sure felt like it was, and that will do. The next day, everyone assembled in John’s apartment for the last time to decide what to do with his body. The family wanted to take him back to New York for a traditional burial.

 But there had been talk that John’s Los Angeles friends were planning to have him cremated. As if about to face off, two groups formed in opposing semicircles of folding chairs—the family seated on one side, and Kevin and his friends on the other. John’s father, Hank, seemed ready to fight, his whole family there to back him up. Grandpa Joe kept saying we needed to put John on a plane and get him out of there.

 In medical school, we learn that not all family members are created equal; when patients can’t make decisions for themselves and there is no living will, you turn to the spouse first, adult children next, then parents, and so on. There is even a mnemonic (one of the clunkiest in existence) to help you remember the ranking: the Spouse ChiPS in For the patient—indicating Spouse, Child, Parent, Sibling, and Friend, in that order. Following this rule, Kevin would have come last. He and John weren’t married, and gay marriage wasn’t even legal then. My father, a child of the sixties, wasn’t a fan of hierarchies. As a psychologist in the emergency department, he had always strived to foster a unanimous meeting of the minds and hearts. To make things a little easier on people like him, he says it is never too early to tell anyone and everyone what you want in life and in death. Then, importantly, write it down, in an advance directive, on a POLST form, and maybe even on a few napkins scattered throughout the house. Hank fired the opening salvo: he told Kevin that they were going to take John back to New York. Their community expected a traditional burial, needed it.

 Kevin listened quietly until Hank finished. With a softspoken grace, he looked Hank in the eyes and told him he would never do anything against the family’s wishes. If they wanted a burial in New York, he would help carry the casket. But, he said, John had told him many times that he wanted to be cremated and have his ashes scattered on Maui, at a certain overlook they had visited together.

There was a long silence. Hank looked around, at his wife and family, at Grandpa Joe, all of whom seemed to be waiting for him to deliver their counterpunch. But then he lowered his head. He started crying into his hands.

 A minute passed, and then he sat upright, sniffed, and nodded. In a clear, firm voice, he said, “That’s it. That’s what I want for John. I want you to take him to Maui.” In perhaps the only true miracle I have ever personally witnessed, Kevin and his friends lifted from their chairs in perfect unison, crossed the small living room, and flooded the family with hugs. Everybody cried, and the many headed beast of our congregation dissolved into a sea of affection. Kevin did go to Maui to scatter John’s ashes. Afterward, John’s family celebrated his life with a memorial service at their church in New York. My father gave the eulogy and Kevin sat with the family. All of this was a long time ago now. John would be in his fifties. He would have mastered a Hollywood accent. His big break would have come. He would have taken me to the Oscars.

I moved away from California to go to graduate school and medical school, but eventually, I found my way back to Los Angeles. I still go to iconic theaters. I finally bought season passes to Universal Studios Hollywood. And like everyone else in this town, I’m trying to write a screenplay. But I’m not an actor. I’m not remotely famous. I’m a radiation oncology resident.

 I’ve learned a few things since the 1990s, and so has the rest of the world. It still devastates me that John just missed the major advances in care. I think about him regularly during my training. In oncology, life-prolonging breakthroughs are frequent, which inevitably means that some people will be among the last to miss out. Some people, and their families, will look to me for hope when there is none. In their entreaties, I see shades of my own loved ones—my father’s diplomacy, Grandpa Joe’s doggedness, Kevin’s advocacy, Hank’s compromise. Most of all, I see glimmers— brief resurrections—of John, whose disease stripped away so much, but left in clear relief his kindness and humanity.

 Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lydia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today we're joined by Dr. Matthew Farrell, a radiation oncology resident at UCLA. In this episode, we will be discussing his Art of Oncology article ‘First Cousin Once Removed’.

At the time of this recording, our guest has no disclosures. 

 Matt, welcome to our podcast, and thank you for joining us.

Dr. Matthew Farrell: Thank you so much for having me. Great to be here.

Dr. Lidia Schapira: It's our pleasure. I'd like to start this conversation just asking a little bit about your reading preferences. Are there any books that are on your figurative night table right now that you'd like to recommend to our listeners?

 Dr. Matthew Farrell: Yeah, a lot of times that night table is very figurative in that I am listening to audiobooks. Living in LA, I spend a lot of time in the car, so I listen to a lot of books. But I do like to physically read certain books, and one of those recently was George Saunders' new collection of short stories, Liberation Day. He is a wonderfully creative, funny, warm-hearted writer of short stories, which is one of my favorite forms. It's what I've written the most and what I studied the most back when I was in school, taking classes, undergraduate and graduate in creative writing.

 Dr. Lidia Schapira: Tell us a little bit about your passion for writing and how you have integrated that into your professional life now as a medical oncologist?

 Dr. Matthew Farrell: Yeah, I studied writing and was interested in writing before I transitioned to medicine. So, I minored in creative writing in college, and then I went to graduate school to get a Master of Fine Arts in creative writing and fiction writing. And it was partially that process that eventually led me into medicine. I realized that a lot of what I was writing about actually had to do with medicine. And as I was rereading some of my own work, I was drawn to stories of illness and family and recovery and processing grief, and I decided that those stories were really compelling to me and decided to transition to medicine. It was also helpful that my wife - girlfriend at the time - was applying to med school, so I had that idea in my head, and she was inspiring to me. So, I transitioned to medicine.I love to keep writing. I still love writing, and a lot of what drew me into oncology specifically is the brilliant, captivating, moving stories of interacting with people. And so it's one of my outlets and things I do for fun, as well as a way of helping me process what I see.

 Dr. Lidia Schapira: Before we talk about this story, let's talk a little bit about your ideas of the language that we use, because I know you've written about that as well. So, as a writer and as a person who loves to reflect and find story, tell us a little bit about how you negotiate the words you use and the language you hear your colleagues and your peers using with patients.

 Dr. Matthew Farrell: Coming from a writing background, where in workshop, we would go through our own stories, my writing professors would go through each word with a fine-toothed comb and sometimes in very elaborately, critical ways would say that this is a terrible word, this destroys the whole sentence, the whole story. And it just had me paying attention to the written language as well as the spoken language. And one of my creative writing mentors, my thesis advisor Ahud, he had leukemia and eventually died of leukemia, and he talked a lot about the experience of having cancer and the way that cancer is often talked about in this kind of heroic way in which the treatments are weapons and cancer is waged on a battlefield and people with cancer are heroes of that and how that can be very empowering in certain circumstances and also very draining in others.

Dr. Lidia Schapira: Those are such fine points, and it's obvious that you're very careful about the language that you use in your writing. So, let's talk a little bit about this piece that we've just published in JCO that is a little different than most of the pieces because it describes scenes. Tell us about how you put these scenes together, what it meant to you, and what the overarching message is for your readers.

 Dr. Matthew Farrell: Yeah, I think I'm used to writing scenes. I'm used to writing both fiction and nonfiction stories like this, and when I was approaching this, I just wanted to try to capture the experiences as I had understood them. And I also talked a lot with my family about them to try to remember what it was like and how our thoughts have changed on it over time. And so I tried to capture who John was and my memories of him as best as I could. I think that the best way to get across people's personalities, their vibrancy, is by writing scenes about them, because I can never describe someone as well as they can illustrate themselves through their own actions and dialogue.

Dr. Lidia Schapira: So John was this figure that you had admired as a child and was so interesting, and then you bring us to a very debilitated John and some scenes in his apartment. Tell us a little bit about the time, the context, and the illness.

 Dr. Matthew Farrell: Sure. This was the mid-1990s, and there were a lot of changes going on in the care of HIV and AIDS, a lot of rapid changes in our understanding of the illness as well as the treatments available for it. And it was really hard and devastating that John was able to see a lot of promising treatments on the horizon, but they weren't readily available to him when he needed them. And so it's tragic to think about, if all of this had happened just a year later with the rollout of HAART, or Highly Active Antiretroviral Therapy, his story might have been completely different, and he could easily still be here today, but he just missed it. And so that was very hard to see him go from being just about as vibrant and healthy and active a person as can be imagined, someone who I just envied and admired in terms of his physical ability; for him, if he could go from where he was to where he ended up, it was just completely devastating.

Dr. Lidia Schapira: And then there was the stigma of the disease and the scene that you so beautifully share in your piece about different family members coming in to talk with him and say their goodbyes. And I think it was your grandfather who just couldn't let go of the ‘you must fight, you're going to get well’ narrative. And I think your father, who is a psychologist, was sort of saying, "Hey, wait, we're having the wrong conversation here. This isn't what we agreed to." Can you tell us a little bit about what that felt like to you, observing it, perhaps your younger self and how you've thought about that now as a professional who's probably having these difficult conversations with patients?

 Dr. Lidia Schapira: This was my first experience with these sorts of conversations, and I think about them a lot now, is I do have these talks with people, and I just can picture my Grandpa Joe charging in there and saying, "You can fight this," completely out of tune with what the goal was. And he and my father are similar in some ways, but very different in others. My father is very relaxed, easy-going. He could come to a cordial agreement with a grizzly bear, and my grandfather was that grizzly bear in some respects, and he was stubborn and not always the best listener. But what was striking about it to me is that I know that my grandfather's actions in that moment, even though they weren't in line with what we were trying to do or what my father and the hospice folks were trying to have us do, they still came out of love and out of devotion to John. Grandpa Joe, how he expressed his love for his family was through fighting for them, and so he was doing that for John in the only way that he knew.

 And so when I am involved in conversations toward the end of life with goals of care now and I see situations in which people don't always reach the same page or come to the same understanding, I'm reminded of the fact that that can be surprising and frustrating, but it's okay because people process grief in their own ways and express love in their own ways.

 Dr. Lidia Schapira: I can just imagine you're thinking about that when you're in a room and you're sort of casting people, "Oh, this is a Grandpa Joe. He means well, he loves a lot, but we just need to help him to understand what's happening." And there's another character in your story that I want you to talk a little bit about, and that's Kevin, the loving partner and caregiver, who's first sort of marginalized by the large group descending upon them and claiming John. And then there's a scene where there's peace between all factions. Tell us a little bit about how that felt to you, witnessing it as a child and how you thought about it in the years that came later.

 Dr. Matthew Farrell: Yeah, I was still very young at the time, but these scenes completely seared themselves into my memory. And the piece that ended up coming out of this scene was due to Kevin and Kevin alone and his love for John, which he communicated so well, as well as the knowledge he had of John's wishes that other people didn't have. That is what allowed people to come together and to begin healing. And it has reminded me that it is never too early to share your wishes with people you love who can then be advocates for you when you can no longer advocate for yourself.

I tend to think about it this way: when you communicate your wishes to other people, you are allowing yourself to get the type of care you want and not get the type of care that you don't want. But you're also giving a gift to your loved ones because by Kevin communicating what John wanted to our family, to John's father, it gave everyone the confidence that they knew that they were giving John what he wanted. And that provided a lot of comfort. So if you share that with someone and then they have certainty that they're helping you achieve what you would want. And that's the gift that Kevin gave to our family that none of us will ever forget.

 Dr. Lidia Schapira: I think the use of the word ‘gift' is wonderful, totally appreciated. And I understand you're very deliberate with your choice of words, so I appreciate that. I think that we don't quite know how to value sometimes some of the gifts that our patients give us in the exam room, at the bedside, in terms of how they help us, help them by being clear, by expressing their gratitude often. And you bring that out so beautifully.

 So as a gifted and trained writer who's now embarking on a career in radiation oncology, how are you going to continue to combine these talents? Are you writing a play or what are your plans?

 Dr. Matthew Farrell: I still just write a lot in whatever comes to me. And I do write a lot about medicine and also a lot not about medicine. And it's fun for me. I did study writing formally, but I still have tons to learn all the time and I'm still learning from other people. And I try to be as open as I can to feedback in my own writing. I am, among other things, trying to write a screenplay, like many people in LA. I also worked briefly in the film industry for a summer at a film management company, and there was this joke about how everyone in LA is writing a screenplay, but almost no one has written a screenplay. And so I'm unfortunately still in the former category, but working on it.

Dr. Lidia Schapira: Is there something you've learned working in the film industry that you want to share with your colleagues working in oncology that could help us be better doctors?

 Dr. Matthew Farrell: One is just, I think, movies, shows, writing, a lot of it is focused on people and humanity and the human condition. And I find those stories very moving. And those sorts of stories are also very present and central in medicine. I think that obviously, by getting to know people, you can help them achieve what they want. I know that, again, this whole story was my first encounter with the limitations of medicine and when there aren't very many treatment options available to help people therapeutically. But still, there were many good outcomes for us to work toward in this situation, and in oncology, too. Whether that's helping to provide understanding, helping people come together, helping provide comfort. I know hospice and palliative care was incredibly helpful to John, and that's one of the things that I like about radiation oncology, among many other things, is its role in palliative care, and palliation in terms of reducing pain, reducing bleeding, reducing suffering, enabling functional gain and quality of life. And yeah, I think that the stories that I encountered in movies, which I got a great appreciation for, among other things from John, and the stories that I read about in my study and writing, I still am learning and experiencing those stories in medicine. And it's been each kind of phase that I was in have been incredibly moving to me and have helped me grow as a person.

 Dr. Lidia Schapira: So before we end, I have to ask you this question. Do you have a favorite illness memoir or story that has been published or has been used to inform a play?

 Dr. Matthew Farrell: One of the writers that I've studied the most who wrote about medicine as well as illness was Anton Chekhov. I took a whole course on him when I was in graduate school and he was a physician, one of the great physician writers of all time. And he wrote about, in contrast to what a lot of other writers were writing about at the time, he wrote about doctors, people, peasants, everyday humanity in really moving ways. And he just has so many stories about illness and pain and loss that are all worth reading.

 Dr. Lidia Schapira: Well, thank you. It's been a lovely conversation. We enjoyed reading your story and learning about the family. Thank you for sharing that with us.

 Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO's Shows at asco.org/podcasts. 

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Guest Bio: 

 Dr. Matthew Farrell is a radiation oncology resident at UCLA.

Listen to ASCO’s Journal of Clinical Oncology essay, “I Want to Kill You” by Dr. Noelle LoConte, Associate Professor of Medicine at the University of Wisconsin School of Medicine and Public Health. The essay is followed by an interview with LoConte and host Dr. Lidia Schapira. LoConte shares her experience of a patient's threat to kill her and her reflections on how health care can be improved.

TRANSCRIPT

Narrator: I Want to Kill You, by Noelle K. LoConte, MD (10.1200/JCO.22.02896)

 My patient threatened to kill me. I was in the middle of a busy medical oncology clinic. I was seeing her to discuss test results 1 week after I told her I was concerned that her cancer had returned. As I suspected, the test confirmed recurrent cancer, and this time, it was incurable.

I walked into the room to share this news with a woman who I had been seeing for about 3 years. I had been her oncologist since she was first diagnosed with stage III cancer and saw her through surgery and adjuvant chemotherapy. I had met her children, knew the names of her pets, and had discussed my children and pets with her. We were on very friendly terms, and I enjoyed seeing her name on my clinic schedule, certain that beyond discussion of her cancer and test results, we would also get into some interesting conversations about life, the weather, or college sports. Truly, it was a delight to be her oncologist. She had no known mental illness, no brain metastases, and had never been angry or violent with me. I used the SPIKES protocol to review why we were there and deliver the test results.1 I had done this many times before, and there was nothing that stood out to me in the moment about her or this clinical situation to make me think that I was in danger—a fact that made what happened next even more shocking.

When I paused to see what questions or thoughts she had, she said, “I want to kill you. I want to blow your face off. You should never have become a doctor.” I intellectually understood that she was upset about the news of her cancer recurrence and had understandable anger at the dramatic impact this turn of events would have on her future. I understood that, in her mind, someone had to be blamed, and, mostly out of convenience, it was going to be me. I have since wondered if her lack of close friends and family may have amplified her reaction, in that she had few outlets available to her to discuss her fears and concerns. I have wondered if she felt let down by me after our years of cordial and friendly visits. It was a real-life example of kill the messenger.

 She continued telling me that she could find my home address. At that moment, I scanned the room and recognized that I could be in real danger. I stood in the corner of the room. To get out, I would have to walk around the desk and between her and the examination table. I also realized that because it was a holiday, there were very few people around who might hear me yell for help. We did not have a panic button or hospital security on speed dial, and it would have taken them many minutes to get to me if I had used the phone in the examination room to call security. I looked down and saw that she had two large bags with her. Patients often bring bags such as these to their chemotherapy appointments, bags filled with things to pass the time such as iPads, books, knitting, board games, blankets, snacks, and water bottles. Suddenly, I realized that she was not scheduled to get chemotherapy that day, so why did she have these bags?

 I was sure I was about to be killed. I was certain she had a gun in those bags.

 I said anything I could think of to de-escalate the situation and get out of the room. I promised her a new oncologist, told her I would become a better doctor, and suggested that maybe the biopsy results were wrong (although I knew they were not). As she continued her tirade, I carefully walked past her to get out of the room, and although she never moved toward me, she continued to yell about what a terrible person I am. Once I was back in the workroom, a nurse escorted the patient out of the clinic. We called hospital security and were told they felt their services were not needed as the patient had left the clinic.

 Despite this horrific encounter, I managed to make it through the rest of the clinic day in a daze. After the clinic was finished, I emailed my supervisor since it was a holiday and other employees were not in the hospital for me to call. In this email, I conveyed my fear and concern about this encounter while making it clear that I was still worried about my safety and the ability of the patient to continue to harm me. The response I received was generic: We will look into it. The very next day while I was at home, I received an alert that there was an active shooter in the area and realized with dread that it was on my block. It was not my patient, but her words about finding my home address haunted me. I hid on the floor after closing the blinds and locking all the windows and doors. My children were with me. For days, I did not sleep more than 1 or 2 hours. I was on constant high alert.

 Three days later, I was seeing a different patient in the clinic and had what I now realize was a panic attack. I was barely able to complete the visit. The patient was kind and understanding, but I felt inadequate and knew that my patients deserved better. Importantly, I also knew that I deserved better. I reached out again to my immediate leadership team and said plainly that I was struggling and needed help. I was offered statements of support but no concrete actions.

 While crying in my office, I searched our hospital’s website for possible sources of help. I was lucky enough to come across our Employee Assistance Program and eventually got connected to a therapist. I will never forget the kindness and help she provided. She (correctly) told me that I had suffered an intense trauma and walked me through the next steps, which included meditation, hydration and nutrition, and intense aerobic exercise. She explained that the aerobic exercise (telling me to run as hard as you can with a goal for high heart rate and lots of sweating) can help the brain to heal from trauma and will prevent or diminish the development of posttraumatic stress disorder. I resisted my urge to search on PubMed to ascertain if these were evidence-based solutions and decided to try whatever she suggested. She also helped me accept a 2-week leave from work and find a therapist who specialized in trauma for health care workers. I continued to see a trauma therapist for a year until I felt I had adequately recovered.

 Eventually, as is true with most traumas, time itself was the best healer.

A few weeks later, when hospital leadership learned of my experience, things started to happen. Security did a walkthrough of the clinic space. Patient relations notified the patient that this type of behavior would not be tolerated.

There was a backup plan put into place in the event the patient needed care when I was the only oncologist available (eg, on the in-patient unit). It was not all forward progress, however. I was told no changes needed to be made to the clinic and that we could not keep examination room doors open because of privacy concerns. The provider desk would continue to be in the corner of the room, and the patient would continue to sit between the provider and the door. 

This was understandable given the cost to reconfigure rooms and the unfortunate reality with firearms that even being close to a door may not matter. I asked for panic buttons to be installed—I knew these existed in other clinics—but was told this could not happen. When I asked to be scheduled in rooms where my desk could be next to the door, I was offered a single conference room with no examination table and no medical supplies. I usually work out of three rooms on clinic days, so this would not work. I figured this was as good as it would get and elected to move on and suck it up.

Fast forward to 2 weeks ago, when I learned that as much as I hoped these traumatic patient interactions would leave health care workers, they never truly do. I was the oncologist for the in-patient unit at our hospital, which is a liminal space of end-stage disease, anxious patients and families, and difficult decisions. The stakes and severity of the patients’ situations are high. One patient and her family were furious at their medical situation of rapidly progressive cancer, as well as the hospital parking and layout, the plan of care, and even the cafeteria options. I was the recipient of all their frustration.

 As the patient and her family yelled at me for being inept and stupid and not serving their needs, I had the distinct sensation that my spirit was floating away from my body. I was rising toward the ceiling, watching it all play out in front of me, seeing myself from a bird’s eye view. I thought, “Wow, I am dissociating.” It was a surprisingly effective tool to Protect me at that moment and one that I now recognize as a normal response to trauma. Once the patient and family got all their anger out and told me to leave the room, I became unsteady and had to hold the banister to stay grounded. To drive home how vulnerable we all are in facing these kinds of threats, I reflected on the job of an oncologist. I give bad news on a regular basis, I control opiate prescriptions, and many of my patients feel their pain is not well controlled, a phenomenon seen across many oncology patients.2 If we think physicians are only murdered in the emergency room or on the psychiatry unit, we are fooling ourselves. Recent changes to concealed carry laws and increasing levels of medical mistrust and anger directed at health care workers in the wake of the COVID-19 pandemic likely will increase all providers’ risk of gun violence.

 With reflection, I now understand that my experience then was made worse by the lack of informed response by leadership to mitigate my trauma and the lack of efforts to improve safety. We deserve leaders and hospital staff who know immediately what to do when a physician is threatened, including reassigning the patient to a new provider immediately, having hospital administration or patient care services review with the patient the zero tolerance policy to provider threats, and allowing a prompt leave from work to address the trauma response, which is best done immediately after the event not months later or only on request.

 We deserve urgent access to therapists and peer support who understand how to process and overcome trauma. Institutions should track threats to providers in real time and make rapid changes to improve safety. As individuals facing a traumatic patient encounter, we cannot afford to wait for the system to catch up to our needs. We can seek our own counseling and professional support while also providing critical support for our peers.3-5 I thought I was the weak one for not being able (even still) to let this death threat be in the past. I realize now that I am brave and strong for asking for help. We deserve safe environments and clinical practices to allow us to do the difficult work of being an oncologist without worrying about our personal safety. Together we can create clinics, hospitals, and teams that prioritize provider safety and proactively work to mitigate the trauma of patients and families who threaten their physicians and providers.

 Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today we are joined by Dr. Noelle LoConte, associate professor of Medicine at the University of Wisconsin School of Medicine and Public Health. In this episode, we will be discussing her Art of Oncology article ‘I Want to Kill You’.

 Our guest disclosures will be linked in the transcript.

 Noelle, welcome to our podcast. Thank you for joining us.

 Dr. Noelle LoConte: You're welcome. Thanks for having me.

 Dr. Lidia Schapira: It's our pleasure.

 Dr. Lidia Schapira: I like to start the conversation by asking authors what it is that they're reading or what book they would recommend to a friend.

 Dr. Noelle LoConte: Oh, that's a good one. I'm reading a book called Hell of a Book right now. Highly, highly recommend it. It's phenomenal. And a book that I would recommend that I recently read - well, Pachinko is a book that I read last year, but I just can't stop thinking about it. So I think that would be my recommendation.

 Dr. Lidia Schapira: So good fiction is a wonderful way of releasing stress after a hard day at work.

 Dr. Noelle LoConte: Truly.

 Dr. Lidia Schapira: Can you talk a little bit about what made you write this particular piece? Are you somebody who likes to write to process experiences, or was this a particular message that you needed to convey?

 Dr. Noelle LoConte: Yeah, I used to journal quite regularly, but gave that up when I started residency and haven't really picked it back up. But this story kind of wrote itself for me. I felt compelled. I could not stop thinking about it, and eventually, I had to do it.

 Dr. Lidia Schapira: Reading it is very impactful. And you start with this amazing line, "My patient threatened to kill me." So you're telling us immediately what happened. And the story is quite awful, and I don't know if I should ask you to tell us a little bit about it, but just for the sake of bringing the listeners into the story, can you very quickly recap what happened and how that made you feel?

Dr. Noelle LoConte: Yeah, the quick version is I had a long-standing patient in Oncology who I had an established relationship with, who had no red flags for me, who was getting the news of a recurrence, and in response to that news, gave me what I thought was a credible threat to kill me. And the story is about sort of what happened after that, the ripple effect even years later, and how the response of my boss, my health system, my colleagues maybe amplified or made it worse. And then what really compelled me to write this story was when there was a physician that was murdered by a patient, I think not an oncologist, but I just felt the circle sort of tightening in that eventually we're all going to have to think about this. And so that's really what pushed me to write it.

 Dr. Lidia Schapira: Yes, and we're grateful for you bringing it to our attention. Let's just start by reflecting on this relationship you had with a patient. You opened the essay by saying that you seemed to trust each other, that you were delighted to see her name on the schedule, that she knew about you, that you had shared freely about your life. And then this threat comes out of nowhere. You didn't anticipate it, and it also comes at a time when there were very few people around because it's a holiday. So tell us a little bit about how you felt in that moment. You basically wanted to make a quick exit from the room, and that comes across, but can you tell us a little bit about what the feelings were that you experienced at the time?

 Dr. Noelle LoConte: Immediately, I felt terrified because whether she intended to or not, I believed her that she had a firearm and was going to kill me. The story goes into why I felt that way, but suffice to say; I couldn't sort of intellectualize my way out of this one. I really, deep in my heart, felt panicked. I think after the fact after I got out of the room and got through that day of clinic, I felt ashamed. I think that was probably the emotion I felt, that I fell for it, so to speak, that I didn't just trust that everything was going to be fine.

 Dr. Lidia Schapira: Can we talk a little bit more about that shame? I think that is such an important feeling that many physicians share an experience at some point and often doesn't get talked about. How long did it take you to understand that it was perhaps some shame that you were also feeling and perhaps that that was also isolating and compounding the trauma?

 Dr. Noelle LoConte: I would say I felt ashamed because I got back to the workroom, and I had to ask for help. I'm of a generation of physician before work hour restrictions and caps and so forth, where I worked many a day, totally sick. I don't think I had ever called in sick to that point. I'm not saying that to say that's the right approach. I, in fact, do not think that's the right approach, but that's the type of physician that I am and how I grew up. I'm also from the upper Midwest, where work ethic really is like the most important personal characteristic, so I take my work pretty seriously. So I felt I had let myself down, I'd let my team down, I had let my patients down, that if I had been a “better physician,” that this wouldn't have gotten to me the way it did. So I would say I felt shame almost immediately. It's been the letting go of the shame that has taken a lot longer.

Dr. Lidia Schapira: Talk to us a little bit about the process of letting go of the shame. You mentioned very specifically some activities that helped, finding a therapist that helped, taking time away from work that helped. But walk us through that process.

 Dr. Noelle LoConte: Yeah, and I think part of the story, too, is that I kind of bumbled into this, and it would have been better for people above me or supporting me to be like, “You need to do X-Y-Z.” And ultimately, it was when I landed with Primary Care that they were like, “Oh yeah, we get threatened all the time. Here's how we do it.” But yeah, what I did was I used employee assistance program, and then they connected me with a trained therapist who worked with providers that have been threatened - so unfortunately, a growing population for her - and I just in that moment decided to set aside my need to kind of be evidence-based and intellectualize my way out of everything, and I said I am just going to trust that whatever they tell me is sound, and no matter how ‘woo’ it sounds to me, I'm just going to do it. Because, at the time, I wasn't sleeping at all. At this point, it had been days, I think since I had slept. And she talked about hydration, nutrition, exercising to really get your heart pumping, get really sweaty, having a safety plan, not being alone. And so I just really just said, ‘I'm just going to do it.’. And then, ultimately, it's really time away from the incident. I mean, it still has not left me, but it is much better.

 Dr. Lidia Schapira: Can you share with us a little bit how this impacted your life away from work, at home, how it impacted your relationship with your kids, with your peers, and with people you interact with outside of medicine?

 Dr. Noelle LoConte: Yeah, I mean, the most immediate thing was that, unfortunately, there was an active shooter alert that happened shortly after my incident. And I was at home with my kids, and in the moment, I thought I was going to die, and I thought my kids were going to be left without a mother. So, my kids, I wanted to keep them safe from harm, and so I had real moments of thinking like, I should leave my job. It's not worth it. As far as my husband, he's also a physician, and so he implicitly understood.

 Dr. Lidia Schapira: I'm glad you had the support that you needed. But you talk a little bit about the lasting trauma, and in the article, you mentioned that what led you to write about this was that there was a trigger that occurred. Can you share a little bit about that? And not only what the triggering incident was, but how do you continue to deal with sort of this ripple effect of what happened now several years ago?

 Dr. Noelle LoConte: Yeah, the triggering event for me was I was up on our inpatient unit. So I'm an academic oncologist, we have an inpatient oncology unit. At the time, it was staffed by medical oncologists, we do a week at a time. Now it's shared with the hospitalist, which is wonderful. Actually, it's a great model. But I was the medical oncologist up there, and so you get whatever comes in the door for that week, and there was a patient who was angry and frustrated and had a very bad cancer and the recipe for possible aggressive behavior. And so we were rounding, and I was in the room, and she started yelling at me, and her mother started yelling at me about parking and the food in the cafeteria and when her CAT scan was going to happen - things I have zero control over. But I'm used to– I think all oncologists are used to kind of being the receptacle for people's feelings about an out-of-control situation. At least they can control their conversations with us.

 So in the moment, I was like, “Okay, she's not really mad at me, she's mad at the situation, and I'm just going to let her get this out.” But what happened was it brought me right back to that room with my patient, and I dissociated for the first, and I think maybe the only time in my life where I physically could feel myself, like, leaving my body. It was very unsettling for me in the moment, and I had to kind of back up against the wall and ground myself. I realize now what I was doing. But yeah, so that happened. And then that same day, I think, was the day that the orthopedic surgeon got killed. And so I was just like, ‘What is going on?’ There's so much gun stuff right now that it's just impossible to be like, “Well, I'm never going to think about this again,” because it's in your face all the time.

 Dr. Lidia Schapira: I'm so sorry this happened to you. And again, on behalf of all of our readers, we're grateful that you took the time to share the experience with us.

 So thinking a little bit about how we can respond to colleagues and how we can perhaps prevent some of these consequences of violent threats or acts of violence, what have you learned, Noelle? How should organizations respond? What do we need? What can we expect?

 Dr. Noelle LoConte: Yeah, I think if you're in a leadership position over a clinic, over a group of providers, including physicians, NPs, APPs of any variety, learners, medical students, residents, fellows, you need to know at a moment’s notice what to do if that person is traumatized. And I would include threats of violence in that trauma. Ultimately, it was sort of a game of hot potato with me, and nobody really knew, and they were looking into it, and it's really time sensitive. So I would say if you're a leader, know what to do and know it immediately. I think the other thing is, if you're a male, know that this happens to your female colleagues and non-binary colleagues much more. One of the strategies is to transfer the patient to a male provider. I think hospital security could have been more responsive to my concerns. So in my workspace, and it continues to this day, the provider’s in the corner of the room, so you have to walk past. I think we could take some cues from psychiatry and emergency medicine, having things like panic buttons, easy exit for providers, security walk-throughs.

Dr. Lidia Schapira: It saddens me to think that we need to think about it and plan for it in a way because we talk so much and train so much for establishing trusting relationships with our patients, and what you're saying is, basically, we can't take anything for granted, even in the context of what appears to be a functioning longitudinal relationship. And that's a scary thought. How do you go to clinic every day and think that this might happen again when you walk into a room?

 Dr. Noelle LoConte: I mean, I'd be lying if I didn't say I sort of compartmentalize it, right? I am much more cautious about what I share with my patients about my family. I always kind of take a scan of the room when I'm entering right now and kind of know my surroundings a little bit better, I would say. And I don't assume, I think before this, I had assumed if they have brain mets, if they have a history of a psychotic mental illness, something like that, that I would be more concerned. I'm sort of always aware that this could happen. I think advocating for things like metal detectors, hospital security are all good things too, and I have much less tolerance for being the punching bag, I would say right now. So when people get angry, I just say, ‘I'm leaving the room. When you've calmed down, I'm happy to come back. Here's how to get a hold of me.’ And that's all just self-preservation. That's not because I think patients are bad for being angry. I would probably be angry too, but I need to have clear boundaries about what I can and cannot do.

 Dr. Lidia Schapira: How do you think this experience has changed you? And do you think that your colleagues and your patients appreciate the change?

 Dr. Noelle LoConte: I think it's made me less open. It's definitely made me not want to have super close relationships with patients anymore. Less trusting. I mean, I know that my colleagues happily covered my clinic, but I know there are also hospitals where that wouldn't happen. I'm eternally grateful to those few weeks where they let me take a breather because that's when I realized I really love patient care, and I missed it. I don't know if everybody loves the new me, but I don't know that we had a choice.

 Dr. Lidia Schapira: Do you think this is, in part, a gendered conversation? You mentioned that it's more likely to happen to women. Can you expand a little bit on that for listeners?

 Dr. Noelle LoConte: Well, when you go to the literature, which of course, being an academic oncologist, was my first response, this happens all the time in emergency medicine and psychiatry. Much more common against women, I'll say providers, but physicians in particular. So yes, it is absolutely a gendered conversation. I think the expectation when we walk in the room is a different expectation about how relational we're going to be, how caring and compassionate. It's not just enough to be competent and intelligent. You also have to be motherly and loving and all this. So, yes, I absolutely think it's a gender conversation for sure. For sure.

 Dr. Lidia Schapira: Are there any texts or papers that have been particularly helpful to you or stood out to you that you would recommend to others?

 Dr. Noelle LoConte: There was a series, I believe, in emergency medicine literature. I can circle back to you guys and get you the exact reference, but I found their strategies for dealing with aggressive patients very helpful. And I actually found talking to my nursing friends and colleagues was really helpful because they are really experts in de-escalation. So I really rely on them to kind of get language that makes sense coming out of my mouth like that whole, “I'm going to come back when you stop being angry.” So I would say more than any individual article, it was talking to nurses.

Dr. Lidia Schapira: I imagine a simulation exercise could be helpful as well for all of us, right? Especially those of us who may be more at risk or have the sort of open, sincere approach to patient care as if we can trust everybody, and perhaps we can. We're very glad that you shared what you were able to share.

 Dr. Noelle LoConte: Thank you.

Dr. Lidia Schapira: That you brought attention to this very important topic to our community, and I'm sure you've already had responses from colleagues. We've certainly heard from a lot of people who really appreciate your honesty and bringing this story forward and have unfortunately heard similar stories from colleagues.

 Dr. Noelle LoConte: Yeah, I think it's pretty common.

Dr. Lidia Schapira: So good luck, read well, play a lot, exercise your brains out until your heart rate is in the stratosphere. And thank you. Thank you for sending it. Thank you for sharing it. I know it's been very difficult.

 Dr. Noelle LoConte: You're very welcome. Thank you for reading it.

 Dr. Lidia Schapira: Until next time. Thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe, so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

 The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. 

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

 Like, share and subscribe so you never miss an episode and leave a rating or review.

 Guest Bio:

 Dr. Noelle LoConte is an associate professor of Medicine at the University of Wisconsin School of Medicine and Public Health.

 Additional Reading:

 1.         Richardson SK, Ardagh MW, Morrison R, Grainger PC. Management of the aggressive emergency department patient: non-pharmacological perspectives and evidence base. Open Access Emerg Med. 2019 Nov 12;11:271-290. doi: 10.2147/OAEM.S192884. PMID: 31814780; PMCID: PMC6861170.  

2.         Incivility in Health Care: Strategies for De-escalating Troubling Encounters

Listen to ASCO’s Journal of Clinical Oncology essay, “Mrs. Hattie Jones” by Dr. Eric Klein, fellow at Stanford's Distinguished Careers Institute. The essay is followed by an interview with Klein and host Dr. Lidia Schapira. Klein shares the mystery of why Mrs. Hattie Jones might have died when she did.

TRANSCRIPT

Narrator: Mrs. Hattie Jones, by Eric Klein, MD (10.1200/JCO.22.02405)

That Hattie Jones died was not unexpected, but why she died when she did has been a mystery for more than 40 years.

It was late summer and she’d been hospitalized for several weeks when I met her, as it were. In the era before a palliative care subspecialty was established, patients with incurable cancer like Mrs Jones were admitted for inevitably long hospital stays characterized by slow declines in form and function, managed by trainees like me, the least experienced and least expert on the team. The chief resident on the service, burly and gruff, brought us into her private room early on the first day of my rotation on the colorectal surgery service. Mrs Jones appeared malnourished and frail, with one intravenous (IV) bottle hanging and concentrated urine collecting in a bag at the bedside. She did not, in fact could not, acknowledge our presence or answer our queries as to her well-being or needs because of an induced somnolence by the morphine running continuously in the IV. She breathed regularly but slowly and did not seem to be in distress. The goal in caring for her, we were told, was simply to keep her comfortable until she died. She was the first terminally ill patient I’d cared for, and her isolation and unresponsiveness filled me with sadness and unease.

Alone on afternoon rounds later that day, I was surprised to find someone sitting beside her bed holding her hand. The visitor was a sturdy woman a few years younger than Mrs Jones, dressed neatly and respectfully as though she were in church. She looked at me and said, “I’m Hattie’s sister, and I’m here to be with her when she dies.” Her demeanor conveyed a sense of duty both to her sister and herself, and her solemnity evoked a divine presence. I introduced myself and answered her many questions about her sister’s condition. 

“Was she in pain?” It did not seem so, I replied. “Would she ever wake up?” I explained we could wake her up by turning down the morphine but that she would likely be in pain if we did. She considered that silently for a few moments and said she did not want that, although she longed to hear her sister’s voice again. “Was she getting enough nutrition?” The IV also contained sugar water with enough calories for her condition, I explained. She said she missed her sister’s smile. “How long is she going to live?” I admitted that even experienced physicians could not predict that. She was silent after that and after a few minutes I excused myself to tend to other patients.

The days turned into weeks, then months, as the daylight hours grew shorter and the weather cooler and the fall slowly turned into winter without much change in Mrs Jones’ condition. I’d greet her on rounds each morning, never eliciting a response, briefly examine her, write new IV orders, and move onto the day’s work—rounding on patients being prepped for or recovering from surgery, then outpatient clinic, the operating room, and new patient admissions. Each afternoon Mrs Jones’ sister was there by her side for several hours, watching her intently, holding her hand, and sighing sadly. Each day she reminded the team “I just want to be with her,” she said, “so she will not be alone when she passes.”

Days on call for me were generally stressful and lonely, testing my medical knowledge and incompletely developed sense of empathy. As interns and newlyweds, my wife and I had call schedules that did not match—she every third night and me every fourth, such that we only had one evening a week together that first year when neither of us was exhausted. I missed our days in medical school when we shared classes, had dinner together every night, and walked afterward to the local Baskin- Robbins; now we work in different institutions, with different hours, and rarely had enough energy in the evenings and on weekends to truly be present for the other.

I drew the short straw on my team in late December and was on call on Christmas Day. Because the operating room and clinics were closed, I made rounds later than usual and Mrs Jones’ sister was already at her bedside when I entered her room. She told me she came early because she was hosting her large family for an early afternoon Christmas dinner, a long family tradition. Over the months of Mrs Jones’ hospitalization, we’d developed a sense of each other, she trusting an inexperienced, young, and tired doctor trying to keep her sister comfortable, me seeing a devout woman dedicated to her sister’s soul. She asked, “Is it safe for me to leave Hattie alone for a few hours this afternoon so I can have Christmas dinner with my family?” and added that it would be the first without her sister’s presence in many years. I replied assuredly that it was, that her sister’s condition had been stable for many months and that I thought she was going to live for a least a few more weeks. She looked at her sister, then at me, gathered her coat and scarf, kissed Hattie goodbye, and headed home.

The rest of the day was relatively quiet for a day on call but typical for a holiday. There were a few patient phone calls, one or two patients to be seen in the emergency room, and no emergency surgeries. The hospital provided a free meal of turkey and sides to all the staff that were on call, and those of us in the cafeteria shared a sense of holiday cheer, albeit muted by being away from our own families. Despite the happy spirit there, I was lonely, missing my wife, and sad to have to postpone my own Christmas Day birthday celebration. While thinking about that I got what I thought was a routine call from the colorectal surgery nursing unit—perhaps about a patient needing a medication reorder, or a need to restart an IV, or to talk with a family about a hospitalized relative. Instead, the nurse on the phone summoned me to the unit to pronounce Mrs Jones dead. I paused for a long moment before asking, dreading the response: Was Mrs Jones’ sister back from Christmas dinner? “No”, came the answer. My tears flowed copiously and quickly; my heart hit the floor. I sobbed loudly for a few minutes, unable to explain to my colleagues what had transpired.

The walk from the cafeteria to the nursing unit seemed much longer than usual. I examined Mrs Jones for the final time and confirmed her lack of heartbeat and breathing. I watched as the nursing staff disconnected the IV, a lifeline that was no longer needed. I sat at the nursing station and filled out the death certificate. Name: Hattie Jones. Age: 63. Date and Time of Death: 1:23 pm, December 25, 1981. Cause of death: Cardiopulmonary arrest secondary to metastatic colon cancer.

I put down my pen and summoned the courage needed for my last task—telephoning Mrs Jones’ sister to share the news. I do not recall what I said, but I have a vivid memory of the reaction—she was initially silent and then I heard her cry, others in the background joining in when she repeated the news; I remain unsure to this day which one of us was more despondent.

Over the course of my career, I’ve pondered many times over the timing of Mrs Jones’ death. Perhaps she wanted her sister to be surrounded by family when hearing the news so that the burden of her sister’s grief would be lessened by sharing. Perhaps it was meant to serve as a poignant reminder about the need for and power of celebrating time with family. Perhaps it was for me to experience a sense of helplessness to deepen my empathy for those who were incurable. Perhaps it was all these reasons or perhaps none of them. No matter the reason, after a career caring for thousands of patients, seeing many suffer and die along the way, I have never experienced a sadder moment. Why Mrs Hattie Jones died when she did is an enduring mystery, but her memory, the profundity of the bond between these two sisters, and the empathy I learned from them have lived on and helped me navigate the emotional ups and downs intrinsic to the practice of oncology.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I am your host, Dr. Lidia Schapira, associate editor for Art of Oncology and a professor of medicine at Stanford University. 

Today we are joined by Dr. Eric Klein, a fellow at Stanford's Distinguished Careers Institute and Emeritus Professor and Chair of the Glickman Urological and Kidney Institute at Cleveland Clinic. In this episode, we will be discussing his Art of Oncology article, ‘Mrs. Hattie Jones’. 

Our guest's disclosures will be linked in the transcript. 

Eric, welcome to our podcast and thank you for joining us.

Dr. Eric Klein: Thanks for having me. It's great to be here.

Dr. Lidia Schapira: Let me start by asking you a little bit about your process for writing narratives. When do you write, and what kind of scenario triggers your desire to write?

Dr. Eric Klein: I haven't written anything creative like this since college, so I don't really have a process. But I can tell you the process I used for this particular piece. I had the real pleasure of being in John Evans' class. He's a faculty member at Stanford in the English department who taught memoir writing. And so the class was to teach us how to write memoirs, and it was filled with prompts, which was a wonderful way to respond, and it tapped into some creativity that I didn't know I had. 

So the prompt for this particular piece was to write about a secret or a mystery. And I thought about it for a day or two, and I thought, I have lots of secrets in my life, but I don't really want to share them with anyone. And I struggled with it. So I was having dinner with one of my classmates, Thanya, and just discussing this because she had taken the class, and she said, "Well, why don't you make it a mystery?" And it clicked immediately, as I have written, is that this mystery about why Mrs. Jones died when she did has stuck with me for more than 40 years. 

So that night, I was lying in bed trying to figure out how I was going to write this because I'm not a creative writer--tossing and turning. And about 1:30, I got out of bed, and I sat in our dark living room, and I tapped the story out on my iPhone, and I emailed it to myself, and I edited it the next day. And that was the process.

Dr. Lidia Schapira: Your essay has this very factual title, including the Missus, ‘Mrs. Hattie Jones’. And then it starts with this statement, "She died.” We know this, but her death is not unexpected. But the timing was. And that mystery has stayed with you for 40 years. It's a very impactful opening. I thought that was very creative, actually, on your part. Beautifully done. Tell us a little bit about why you have pondered for 40 years about the timing of Mrs. Jones' death.

Dr. Eric Klein: It was a very emotional event for me, in part because I was so young in my career. I had never taken care of terminally ill patients before. Nothing in medical school prepared me for that. There was no palliative medicine service at the time. And I think, as many social scientists have observed, is that things that happen to us when we're young, like our first love, always stick with us more firmly and more deeply than things that come later in life. So that's why it was so emotional for me, and I think that's why it stuck with me for so long. I didn't know how to deal with it at the time.

Dr. Lidia Schapira: Did you ever have a conversation with Mrs. Hattie Jones?

Dr. Eric Klein: Well, I tried. I certainly spoke with her sister a great deal, but Mrs. Jones was unresponsive, and that was by design. The morphine in the drip, and the IV drip was meant to keep her comfortable. I mean, we have learned a lot about palliative care in the intervening decades, so we don't do that anymore. But that was the standard of care then. Someone was in pain, and so you gave them enough narcotic medication to keep them out of pain, and whatever else happened downstream didn't matter. 

I'd say one of the other powerful things about this and sort of the key event of learning that her sister was not at her side when she died was that the whole goal of care was all focused on making that happen and facilitating things for her sister and keeping her up to date. And the nursing team was on board with that and so forth. I felt like it was a big team letdown that we let this woman down and we let her sister down.

Dr. Lidia Schapira: Let's talk a little bit about you at that very tender phase of your development. You're a young intern, and you've let your patient and the team down. How did you deal with that? And how have you since processed how you dealt with that?

Dr. Eric Klein: This was the saddest thing that's ever happened to me. It was the saddest thing at the time. And I think in reflecting upon my career, seeing many sad things, this still resonates with me as the saddest thing ever because of the deep personal disappointment that went along. I don't have clear recollection of how I dealt with it at the time. Probably I just was sad for a few days and moved on. I mean, being a surgical intern in 1981 was very busy. We didn't have a lot of the ancillary services that we have now. The surgical service was busy, and so we moved on day to day. 

This memory just popped up to me every now and then in quiet times and in discussions, in group discussions with colleagues about challenges that we faced in our career, and sometimes in talking to young people about careers in medicine and what you might experience and so forth. And so I guess I dealt with it intermittently through the years and ended up scratching my head. And finally, this was a cathartic experience for me to be in memoir writing, to be able to put this down on paper and, I hope, deal with it finally.

Dr. Lidia Schapira: You make a very powerful case for storytelling as part of a practice of dealing with situations that are so emotionally complex. Forty years later, what advice would you give a young intern who is also facing a moment of extreme personal sadness and grief, and disappointment?

Dr. Eric Klein: Yeah, my advice would be don't be stoic about it. That was certainly the expectation in the era that I trained. It was certainly the expectation for men. There weren't many women surgeons then, but that was certainly the expectation for men. People died—surgical mistakes happen—and we were just told it's part of the game. And I recall my chief of service telling me it puts hair on your chest. It sort of makes you a man, and so you just deal with it. 

So there are so many resources that are available now and a very, very different attitude about the personal part of being a physician and dealing with disappointment and other struggles and the learning curve and all of that. So I would say to youngsters, seek out help—seek out your colleagues who might have been through it. Seek out more senior people and seek out non-physician support people who are generally available at most medical centers and medical schools to help people deal with this, talk about it, and come to terms with it sooner than 40 years.

Dr. Lidia Schapira: I'm curious to know if you enjoy reading narratives written by other physicians that describe similar experiences of grief and loss.

Dr. Eric Klein: I always have. So the Art of Oncology, A Piece of My Mind in JAMA, and I edit a journal called Urology, and we have a section on narrative medicine. And I think that enriches the experience for the entire medical community and helps keep us focused on our real goal, which is caring for patients. And I think that's increasingly hard in the reimbursement-driven productivity era that we live in now. And that's why I think it's important to do that.

Dr. Lidia Schapira: How much have you shared about this creative, reflective side of yourself with your trainees over the years? 

Dr. Eric Klein: I hope it came through. I can't say that I know for sure that it did. I guess I was known during my career as a storyteller, and I would often share anecdotes usually related to more clinical which is facing this clinical problem and how do you deal with it surgically, how do you deal with it medically, that sort of thing. And maybe less about specific patients. So it's probably better to ask my trainees if I did a good job with that.

Dr. Lidia Schapira: Let's go back to this idea that storytelling is very powerful to help us in communicating with each other and processing experiences. Do you use storytelling, or have you used storytelling with your patients in the clinic? 

Dr. Eric Klein: Yes, frequently. My career was mostly focused on prostate cancer, and so when I saw a new patient with prostate cancer, even if it was the most indolent kind, the very first question on their mind always is, "Am I going to die from my cancer?" And I would say I've seen lots of patients, and I'll tell you what the extremes are. I saw one patient with lymph node-positive cancer who's still alive 25 years after his initial treatment and living a normal life. And I saw one patient with really advanced cancer who died after 18 months. And I would say to them, "Your experience is going to be someplace in between those two stories." Or there might be a more specific situation of someone facing a particular treatment or surgery and they're concerned about that, and I would even hook them up with other patients who have been through it so that they could experience the story from the horse's mouth, so to speak. I think it's an important part of managing patients, I do.

Dr. Lidia Schapira: So let's talk a little bit about the language and the plot in those stories. What kind of metaphors do you use, if any? 

Dr. Eric Klein: Well, I had one patient tell me that I spoiled his taste for oranges because when I described the prostate, I described it like an orange with a rind or a capsule on the outside, and the cancers in the fruit in the middle. So that was one that didn't resonate ultimately. Then I switched to lemons since no one seems to like lemons and so forth. I would say the stories generally had a good outcome. Patients want their physicians to be optimistic, and certainly, patients facing cancer want their physicians to be optimistic. And I'm sure I had a lot of other specific stories to tell about specific patient experiences that don't come to mind readily now. 

Dr. Lidia Schapira:  What book have you read recently that you've enjoyed and would recommend to others?

Dr. Eric Klein: I would say Evil Geniuses, which is not a medical story at all. It's a story about the conservative political movement and the Federalist Society, and big business that set an agenda back in the Reagan era to take all the negativity around capitalism and conservatism out and to relax restrictions on business. And to fill the Judiciary with conservative judges and so forth, and how they have succeeded over the course of those decades to where we are now. I have to say I don't read much fiction. I honestly, I don't find fiction does much for me. I read mostly nonfiction. 

Dr. Lidia Schapira: You come across as somebody who is very self-aware, and I assume it's taken a long time to be able to say things about your feelings and recognize the impact some of these patient experiences have had on you. And in the essay, you also mentioned that your wife is a physician and that you spent a lot of time together in medical school, but then the paths diverged. And I'm interested in knowing if these sorts of stories about patients came to your dinner table. Tell us a little bit about that.

Dr. Eric Klein: Yeah, all the time. Actually, over the course of our careers, we would definitely share the highlights and the lowlights of our day and talk a lot about specific patients and the problems that they faced and what we learned from that. And I learned a lot from listening to my wife. She was a pediatric neurologist, so didn't deal much with cancer, but I learned a whole lot more about social determinants of health and how social circumstances really impact the patient's ability to cope with a serious diagnosis and recover from it and so forth. Because she dealt with children who came mostly from impoverished families and didn't have the same sort of family or social service support as the kind of patients that I saw, who were mostly Medicare or private insurance patients.

Dr. Lidia Schapira: I must finish this interview by asking you why you think Mrs. Hattie Jones died when she did.

Dr. Eric Klein: That's a great question. I think the most likely explanation, without really knowing her, but with knowing her sister and understanding the family dynamics, is that she really did not want her sister to hear the news when she was alone in the relatively impersonal environment of the hospital. Whether or not that's true, I don't know. But that's what I had chosen to believe, that she wanted her sister to hear the news when she was surrounded by her loved ones and her family. And I think that resonated nicely with the idea that I wrote about, which is being away from my family on Christmas Day and on my birthday and so forth, and being isolated and alone and how important family is to one's personal well-being and success.

Dr. Lidia Schapira: I like your interpretation. I find it both wise and compassionate. And with that, I want to invite you to share with our readers why you decided to send this story out into the world. I understand the reason for writing it. What made you decide to share it and publish?

Dr. Eric Klein: So let me start with a call out and a shout out to one of my other classmates, Julie, who convinced me to take memoir writing. My wife had taken it and had a good experience with it early in the DCI experience. And I was reluctant because I've only written clinical papers and scientific papers, and I just didn't sense that I had this creativity. So thank you, Julie, for convincing me. 

I shared it because of the reaction I got from my classmates. The dynamic in the class was to share it with a certain number of classmates, and then we were all asked to write a constructive critique of the stories that we've written so that we could get better in memoir writing. But the emotional reaction to this, to my non-physician classmates, was so powerful, and my own reaction to it in writing it. I just read over the proofs that came the other day, and I was crying again, even though I know the story well and have been over it many times, and I thought, "This is something that might resonate with other people. This might be a universal experience." And so it was more of a lark than anything else. But I just thought the world might get something useful out of this.

Dr. Lidia Schapira: Well, it resonated with your editor. One of the tests that I usually use when I read the manuscript is whether or not I'm getting teary or whether I'm feeling anything, and it certainly evoked a lot of emotion. So. Thank you, Eric. Thank you for sending it to us. 

So until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe, so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio 

Dr. Eric Klein is a fellow at Stanford's Distinguished Careers Institute and Emeritus Professor and Chair of the Glickman Urological and Kidney Institute at Cleveland Clinic.

Listen to ASCO’s Journal of Clinical Oncology essay, “Wearing Your Heart Around Your Neck: Fostering Physician-Patient Relationships Through Sports” by Dr. Victoria Wytiaz. The essay is followed by an interview with Wytiaz and host Dr. Lidia Schapira. Wytiaz shares how a shared passion for sports can foster improved physician-patient relationships and empathetic care.

TRANSCRIPT

Narrator: Wearing Your Heart Around Your Neck: Fostering Physician-Patient Relationships Through Sports, by Victoria Wytiaz (10.1200/JCO.22.02529).

As the holiday season approaches, my parents will still ask me to give them a list of potential gift ideas, despite the fact that I am a 32-year-old oncology fellow at the University of Michigan. Last year, that list contained a simple request for a new lanyard … specifically, a black and gold Pittsburgh Steelers lanyard to transition to upon the conclusion of the Pittsburgh Penguins

hockey season and the start of football training camps. All hospital employees must visibly display their ID badges to gain access to the facilities, and as such, a lanyard is essential. For me, it was also essential for my lanyard to serve the additional purposes of representing my passion for my hometown sports teams and sparking joy and conversation with my patients.

Since starting college, becoming a physician was my focused goal. I felt that a career in medicine would provide me with the best opportunity to use my natural scientific curiosity and ability to connect with people to do the most good. I never truly wavered in that career goal; I had seen the dedication and compassion of the oncologists who cared for beloved family members with cancer and felt a connection with their life’s work.

However, if prompted with the cocktail party question, “What would you do if you were not in medicine?,” I would be able to answer without hesitation, “I’d be a sports journalist or sideline reporter.”

As a child growing up in Pittsburgh, sporting events were family outings, background television, and oftentimes, tone-setters for the mood of the city. Early on, I learned the basic rules for the family favorites of baseball, football, and hockey. As I grew older, I sought to understand then nuances of each sport and, in doing so, found a greater depth of appreciation for them. For me, sports represented the ability of individuals to work ceaselessly toward a common goal while facing and overcoming adversity. I found myself drawn to the human side of sports, taking an interest in the origin stories of athletes and trying to grasp the depth of their mental and physical fortitude. To that end, I joined the staff of my college’s daily, student-run newspaper, writing articles and feature stories for the sports section.

On game days, I would wrap up class and head out to the field or court to pick up my press pass, watch the game, attend the press conference, and file my story by midnight. Rather than being fatiguing, I found that my sports journalism pursuits were energizing, and that I was living out two dreams, one in pursuit of a career in medicine and the other as a sports reporter.

Each level of medical training presents its own challenges. Medical school has its share, including late nights in the library studying biochemistry and the anxiety that comes with stepping onto the wards for the first time. My combined internal medicine/pediatric residency seemed at times to comprise an endless string of busy inpatient services and critical care rotations that left little time for any other diversions. The transition to hematology/oncology fellowship brought with it increased responsibility and, for me, new psychological stress. The continuity of oncological care and the ability to guide patients through their cancer journey at a time of utmost vulnerability were the primary factors that drew me to the field, but these

aspects of care also place oncologists on an emotional rollercoaster of extreme highs and lows.

The work can be all-encompassing, and as a trainee with substantial deficits in knowledge and experience, I frequently feel guilt when pursuing passions outside of oncology. I recently experienced this sense of guilt while watching a football game with friends. Around halftime, I started wondering, should I be preparing for next week’s clinic? Am I keeping up with the most recent studies? I also wonder what my patients, both real and imagined, might think if they knew their oncologist was sitting on the couch on Sunday afternoon wearing their lucky jersey. Would this be perceived as laziness, or worse, a lack of dedication to my chosen profession?

As so often happens, patients have been perhaps my greatest teachers in combating that guilt. In wearing my lanyards and inviting conversations that step outside of the world of cancer, I have learned to appreciate that just as I have different passions, so to do my patients,

and there is often overlap which further strengthens the physician-patient bond. Comments on my professional sports allegiance are often the first words spoken to me by many patients and set a comfortable tone, even if our allegiances differ. The next time I see Mrs B and her husband, I suspect that they will have a Detroit Lions lanyard for me so that I can truly be one of them. A big college football win for Ohio State will certainly put Ethan, my 20-year-old patient with sarcoma from Ohio, in a great mood, and we will spend a few minutes discussing the heroes of the game before reviewing his latest scan or mapping out the next treatment plan.

For patients, the drive to discuss something other than their diagnosis or treatment speaks to a deep desire for normalcy at a time and place that is anything but normal. As many patients notice and comment on my lanyard, I have also become more inquisitive about their outside interests which are too often buried or entirely undocumented in their medical chart. While reviewing Mr K’s records before his virtual visit for newly diagnosed testicular cancer, I saw that he drove a Zamboni at a local ice rink, so I began our visit by asking him about the process and if he was a hockey player himself. We traded names of favorite players and our respective

teams’ playoff chances. This brief interaction significantly reduced the awkwardness of a first virtual encounter and helped the rest of the visit flow easily. I sensed he was at ease, and I hope he will continue to feel the same as he continues with his treatment.

I now have a rotating assortment of lanyards to change with the sports calendar, both collegiate and professional. I love walking into a clinic examination room, seeing a patient notice the lanyard and ask if I saw the game on Sunday or agreed with the controversial call or the potential of the latest draft pick. My sports journalism career was brief but rewarding, especially when I had the opportunity to meet and connect with athletes and coaches. In some small way, I still use sports to forge bonds, now with my patients, to learn a bit about their motivations and ambitions. When I have the time, I will watch a game or read an interesting in-depth feature article because it brings me enjoyment, and I hope that my patients also take the time to focus on the things that provide joy in their lives, whether that be sports, art, music, or other pursuits. Both physicians and patients are complete, complex beings capable of harboring multiple interests that when cultivated, enrich our human experience. Recognizing a shared interest or experience with a patient can present an opportunity for an enhanced physician-patient bond, provided that this is guided by the patient’s needs and pursued on their own terms. When the love of sports in an oncology fellow from Pittsburgh happens to mirror that same love in a patient from Michigan, I feel more engaged in my work and even more capable of pursuing my primary passion of providing attentive, empathic oncological care.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and professor of Medicine at Stanford University.

Today, we're joined by Dr. Victoria Wytiaz, a second-year hematology oncology fellow at the University of Michigan. In this episode, we will be discussing her Art of Oncology article, "Wearing Your Heart Around Your Neck: Fostering Physician-Patient Relationships Through Sports". At the time of this recording, our guest has no disclosures.

Victoria, welcome to our podcast and thank you for joining us.

Dr. Victoria Wytiaz: Thank you very much for having me.

Dr. Lidia Schapira: It is our pleasure. I'd like to start by asking you, as an author, to tell us a little bit about your process for writing and your motivation for publishing. In other words, what inspired you to write and what led you to submit this for publication to share with colleagues?

Dr. Victoria Wytiaz: As with a lot of things for us in medicine, it was prompted by our patients. I work a lot with adolescents and young adults and find that interacting with them brings me a lot of joy. Just going through some of my conversations with patients regarding sports and even sharing them with my colleagues and bringing them joy through that. I wondered if that happens for other providers, and that's really what prompted me to want to share the story. The process of writing - I did a lot of writing as an undergrad and that's a piece of my life that I like to do. And when I can combine that with medicine and oncology, another thing that really brings me joy.

Dr. Lidia Schapira: You talk about wearing your heart around your neck and that speaks of passion and then you actually use the word passion. You have a passion for sports. Help us understand that a little bit. Where did that come from?

Dr. Victoria Wytiaz: I think a lot of it came from how I grew up and my family. Sports brought us together, both as an immediate family and our extended family, whether it was watching games or discussing games, something that we enjoyed doing together. And then it was always an easy way for me to make connections with people at all stages of my life, whether it's in medical training or outside of that. Just an easy, kind of non confrontational way to make connections with people. And then from the passion side of it, I like to see other people have passion for what they're doing. And athletes are incredibly passionate people and you can see that and sense it and you can feed off of that. So it's a natural passion for me to watch them.

Dr. Lidia Schapira: Do you play a sport?

Dr. Victoria Wytiaz: I do not. I played volleyball in high school and it was fun, but I'm more of a spectator.

Dr. Lidia Schapira: So as a spectator, the sports that you write about here are team sports. I wonder if you see some sort of a parallel between the coaches and the players in a team and the teams that provide medical care.

Dr. Victoria Wytiaz: I think that's an excellent point and I really do. And you can see it if you're watching a game and you see the coaches interacting with players. And I think the important thing is it's not always the same. The coach relationship with an individual player is different and our relationship with different members of the medical team is different based on individual personalities and roles. So I think the way that changes based on the setting can be seen in both scenarios. And especially in the oncology world, relying on our team members is so critical and everybody has a different role and feeds off of each other in a different way. I agree. That's an excellent parallel.

Dr. Lidia Schapira: We use a lot of sports metaphors anyway when we talk to patients with cancer. Tell us a little bit about how you introduce that language in your visits with patients, and if you worry, as I do sometimes, about winning and losing as ways of perhaps presenting the results or outcomes of cancer treatments to patients.

Dr. Victoria Wytiaz: We certainly do. Sports metaphors are certainly abundant. I don't love the winning and losing either. It really sets up this dichotomy of failure and success. And you're right, sports is so much wrapped up in the winning and the losing. I think really good athletes and really excellent coaches can take things away from a win or a loss and kind of phrase things differently. And I hope I do that with patients to prevent that sense of failure, both on their part and on our part, too.

Dr. Lidia Schapira: How would you describe the magic that sport seems to hold for you?

Dr. Victoria Wytiaz: That's a great question. I think that's quite crazy. You think you've seen everything and then you watch a game, you watch something on television, you see it live, which is even better, and you walk away, and it’s like “I can't believe that happened. I really can't believe that happened. I've never seen that before.” Even with my parents or my grandparents, they've watched for 70, 80 years something they've never seen before happen. It really does hold that, like you said, magic, that you don't know what the outcome will be and you don't know how you'll feel based on what occurs. It really is that sense of unknown that kind of brings you back.

Dr. Lidia Schapira: And it's the beauty of the way that these super athletes also play their sports. I can just think back just a few weeks ago to the final of the football World Cup. I'm Argentinian so o that was a big moment. But even if you're not attached to the team, that was an amazing moment to watch.

Tell us a little bit about this habit of yours of displaying lanyards that identify a particular team as a way of introducing yourself to a patient, because definitely their eyes are going to be drawn to your badge and the lanyard next to it. So tell us a little bit about that, and that's the way you actually introduce your story.

Dr. Victoria Wytiaz: When I was in medical school in Philadelphia, I noticed that a lot of providers would wear a lanyard that identified their undergraduate training. And I thought that was a really cool way to kind of know where people are coming from. We were all coming from different places. Giving like, a little sense of your hometown. It's one of the most common questions we ask our colleagues and trainers, where are you from? This was an easy way to do it. And then when I moved to Michigan, I found that there's a lot of interaction between Pittsburgh, where I'm from, and other places in the Midwest. There's a lot of back and forth. And once I started to wear my Steelers lanyard, my football team lanyard, I got a lot of comments on it. Mostly positive. I figured the seasons change in many different ways and sports seasons change too, so I'll keep a running series of lanyards  that change with the sports seasons. I noticed other people doing it and I thought it was a good way to just give a nonverbal sense of who I am and a part of me.

Dr. Lidia Schapira: Have you had any situations where patients just don't get it?

Dr. Victoria Wytiaz: I am lucky to be in a very sports-friendly city in Ann Arbor, Michigan, and in the Detroit area. I've never had anyone not get it. I've certainly had an interaction with patients where family members are in the room and we'll talk a little bit of sports and a significant other, another family member does a bit of an eye roll, “There they go again. This is going to be another five to ten minutes talking about the game.” But no, I think people appreciate something outside of that encounter that represents us, because I want to know what represents them outside of what they're seeing us in the cancer center for.

Dr. Lidia Schapira: Yeah, I interpreted it when I read it as a way of humanizing yourself as well. And if I could have a lanyard that displays books, I would definitely do that. And I've often come into a room and just talk to the patient about what they're reading, what I'm reading, and try to create rapport that way.

Tell us a little bit about the emotional side of this. I was surprised to read in your essay that you actually felt guilt on a Sunday afternoon when you were watching a football match or baseball game. And I wonder where that comes from.

Dr. Victoria Wytiaz: I think a lot of us carry guilt when we're maybe not engaging as much as we think we should and working towards patient care. And I think for me, it's perhaps where I am in training. I think as you're going through training, it didn't have any gaps. You go from undergrad to medical school to residency and fellowship, and it's always, “What do I do to get to the next step?“ It’s hard to take breaks and you just keep going. But as I was watching this particular game, it was a Sunday, I think it kind of middle of the season football game. This is a four-hour game. Is four hours better spent elsewhere for clinic next week. Are there things I should be preparing for? And I think for me, it comes from that sense of the process of training and how arduous it can be and not always used to taking breaks through that. So sometimes it can feel a little odd.

Dr. Lidia Schapira: Well, I'm sure your well-being coaches will tell you that it's very important for you to take that time away from work and to refuel or replenish your tank.

I found the essay just lovely, very easy to read, and I can identify with your passion and the growth, even as a physician, and using this passion that's out of medicine as a way of building rapport with patients. Can you talk a little bit about how you see that going forward?

Dr. Victoria Wytiaz: The way I see it going forward is that I hope, as I have patients, that I have more continuity with that that becomes even easier. And what I hope it fosters is patients bringing up their interests to me on their own. I wear my lanyard, and that's a very visible thing. So it's a very easy conversation starter to kind of speak on a humanistic level between just two people. And then I hope that over time, patients become comfortable doing that as well on their interests. First, I hope that that stays with me as I kind of progress through my career. I hope the patients feel similarly.

Dr. Lidia Schapira: What lanyard will be on your list of possible gifts for next Christmas?

Dr. Victoria Wytiaz: I have every Pittsburgh team represented. I don't have my undergrad lanyard, which is also the University of Pittsburgh. That would be a good one to have from a sports perspective. From my academic career perspective, that would be the next one. I could go very off the board with, like a niche sport, but I would be nervous if a patient had a really strong passion in that and asked me questions. So I'll stick with the ones that I feel comfortable talking about.

Dr. Lidia Schapira: And my final question is this: what is the message you want readers to take from your essay?

Dr. Victoria Wytiaz: I want readers and providers to take from it that it's okay for us to have passions outside of our work as physicians. That is certainly a passion for all of us, but it is okay to have those other passions and more often than not, something that we are passionate about or enjoy, our patients will also share in that enjoyment. I hope that they use that as a way to connect with patients on just a basic human level, which I think is so important.

Dr. Lidia Schapira: Well, Victoria, thank you so much for your essay and for creating rapport and connection through a love of sports to the readers of Art of Oncology.

Until next time. Thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review wherever you listen. Be sure to subscribe so you never miss an episode. JCO's Cancer Stories: The Art of Oncology is just one of ASCO's many podcasts. You can find all of the shows at podcasts.ASCO.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio: Dr. Victoria Wytiaz is a second-year hematology oncology fellow at the University of Michigan.

Listen to ASCO’s Journal of Clinical Oncology essay, “It Mattered Later: A Patient Turned Doctor's Perspective on Fertility Loss” by Dr. Margaret Cupit-Link, who will be a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, MO. The essay is followed by an interview with Cupit-Link and host Dr. Lidia Schapira. Dr Cupit-Link shares her personal experience with childhood cancer and the importance of educating patients on the known and unknown consequences of their therapies so they can, when possible, participate in fertility preservation.

TRANSCRIPT

Narrator: It Mattered Later: A Patient-Turned-Doctor’s Perspective on Fertility Loss, by Margaret Cupit-Link, MD 

 I was 19 years old when I had to make one of the most important decisions of my life. The problem was, at 19 years, it was not important to me—yet.

With piercing clarity, I recall the very first time I heard the word sarcoma. My leg had been hurting, and I had just undergone magnetic resonance imaging. The doctor spoke of abnormal tissue. As a pre-med student, I blurted out the words, “it’s cancer, isn’t it,” and waited for him to reassure me. He did not—he could not—reassure me.

The days and weeks that followed are still a blur. There was more diagnostic imaging, a biopsy of my tibia, and placement of a subcutaneous port in my chest. When we learned that the Ewing sarcoma growing in my leg was not metastatic, my family celebrated; meanwhile, I struggled to eat, sleep, and breathe, unable to accept the reality that I was no longer a healthy college student. I was a patient with cancer.

Before my chemotherapy would begin, my mom and I had to give legal consent. Technically, I had to give consent—as if I would choose to say, “no thanks,” to the only treatment that could give me a fighting chance to keep living. With each potential side effect that was mentioned, I felt a piece of my morale slip away. Was I going to die? Maybe. Regardless, I would lose my hair, my appetite, my immune system, and my independence. Should I be lucky enough to live through it, I would be susceptible to a host of late effects from chemotherapy, one of which was infertility. Infertility, I felt, was the least of my worries; it paled in comparison with heart failure, secondary malignancies, and death.

As a 19-year-old, I did not want children. My career goals were my priority, and I had yet to be in a serious romantic relationship. Starting a family was not on my agenda. So, on the worst day of my life, when all I cared about was staying alive, I was told I could choose to undergo ovarian stimulation to harvest follicles in a somewhat experimental process that would delay the start of my chemotherapy by several weeks. Without hesitation, I said no. At the time, I did not realize I was lucky to have had time for such a conversation. My diagnosis and presentation allowed for a small delay before treatment; I would later learn that many patients do not get that luxury.

A little over a year after completing therapy and returning to college, I developed hot flashes, night sweats, and mood swings. On the basis of the levels of luteinizing hormone, follicular stimulating hormone, and anti-Mullerian hormone in my blood and an ultrasound showing ovaries without follicles, I was diagnosed with premature ovarian insufficiency and told it was unlikely my ovaries would recover. I was not heartbroken or even disappointed; I was still so thankful to be alive. I did worry, however, what this would mean for my boyfriend, the person I wanted to marry. To this day I am amazed that he, as a 20-year-old man, was completely accepting of me and my infertility and that never changed, even after he became my husband.

Near the end of my pediatrics residency, I came to understand the term baby fever. My coresidents were getting pregnant, my sister was having a baby, and my husband and I were settled down in our very first home. I visited a reproductive endocrinologist. It had been 9 years since I had completed chemotherapy, and I learned my ovaries were not functioning at all. I was told to plan on adoption—of an embryo or a baby—as I was not a good candidate for fertility treatments.

At first, I did not allow myself to react to this news. How could I mourn something like fertility when I was a 10-year survivor of childhood cancer, had exceeded my career goals, and was married to a wonderful person? Most of the time, and on the outside, I was unphased. I spoke about my desire to adopt with enthusiasm. I was honest about my ovarian failure and made jokes about being in menopause. I celebrated my friends’ pregnancies and came to love my nephew as if he were my own. 

I considered the many ways in which I could become a parent, each with its own barriers. Because I had not undergone oocyte or embryo cryopreservation before chemotherapy, having a genetic child was simply not an option for me. I could adopt a baby in need through the foster care system, which would not require monetary payment.

However, I knew then and now that the goal of the foster care system is to eventually reunite children with their families; although I was strong, I could not risk falling in love with a child and losing them to reunification. Private adoption was another option. While it felt unethical to pay a large sum of money in exchange for someone else’s baby,

I would one day have the luxury of being able afford the price tag (at least $20K US dollars [USD] to $100K USD in the United States, depending on the state and organization). Then, there were the options offered by modern medicine—embryo adoption or in vitro fertilization using a donated oocyte and my husband’s sperm. In these cases, even if my body was unable to sustain an embryo, I could use a gestational carrier (surrogate mother). While I knew that having a baby the old-fashioned way was not without its own costs and risks, it was undoubtedly easier than any of my options.

I did not admit—until now—that it hurt to know I would never experience the miracle of pregnancy. It hurt to know that I would never have a child that was half of me and half of my husband. It hurt to know that, even now, my cancer had taken something from me that I could never get back.

My experience with infertility has made me thoughtful about how infertility may affect my patients. As a pediatric oncologist, I am painfully aware that many of my patients who lose their fertility from the drugs I prescribe them will travel the same road of grief I have traveled. I am even more aware, however, that most of my teenage patients are not ready to make decisions about fertility—even when they are forced to do so. In my desire to counsel my patients on this topic, I have tried to imagine a scenario in which the advice of a doctor might have prompted me to prioritize fertility preservation. Perhaps I should have been told that delaying cancer-directed therapy by several weeks would be unlikely to affect my disease outcome. Perhaps I would have benefitted from knowing the complexities of the foster care and private adoption systems. Perhaps fertility preservation should not have been a choice at all, but a standard of care, as it is now.1 What I think I needed to hear, above all, was that I did not understand the gravity of my decision. I did not and could not understand the desire to become a parent that would one day overcome me. If I could go back in time and speak to my 19-year-old self, I would say, “it might not matter to you now, but it will matter to you later.”

Just days before I originally planned to submit this article, after 12 years of menopause, I experienced the unexpected. Seven positive urine pregnancy tests later, my doctor sent me for an urgent ultrasound, and it was confirmed: I was 6 weeks pregnant. At first, I felt I was no longer worthy of writing this article: how could I speak up about infertility from cancer therapy after having miraculously conceived a child? However, I eventually realized my pregnancy was yet another reason I should write on this topic.

Only now, as I hold my daughter in my arms, do I fully understand how much my fertility would come to matter to me.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we are joined by Dr. Maggie Cupit-Link, a third year Pediatric Hematology Oncology Fellow at St. Jude Children's Research Hospital, Maggie will graduate from fellowship and receive her Master's in Clinical Investigations in June. She will then begin a position as a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, Missouri. 

In this episode, we'll be discussing her Art of Oncology article, “It Mattered Later: A Patient Turned Doctor's Perspective on Fertility Loss.”

Our guest disclosures will be linked in the transcript.  

Maggie, welcome to our podcast and thank you for joining us.

Dr. Maggie Cupit-Link: Thank you so much for having me. It's an honor to be here.

Dr. Lidia Schapira: It's lovely to have you. I'd love to start just by asking a little bit about your motivation to write and share this piece. It's such an important piece and you really have shown us what was deep in your heart. And then there's this sort of unexpected resolution. Tell us a little bit about what led you to finally finish the piece and share it with the world.

Dr. Maggie Cupit-Link: So I've been writing for a lot of my life as a way to express myself and cope with emotions. And I had cancer when I was 19 and 20, Ewing sarcoma. And during my treatment, I found writing was very therapeutic for me and very healing. So that's when I got really into writing about my personal experience and actually published a book after I finished treatment. But then writing more recently, I was writing about my infertility, which I had from chemotherapy. And I would write about it and journal about it here and there because it was really challenging. And for a long time, I suppressed a lot of those emotions because I didn't think they were helpful. And I felt, I guess, ashamed and embarrassed to feel so upset about infertility as a cancer survivor who has so much in life. So many parts of my life are so normal and full and even more full than the average person so I felt like I wasn't really allowed to grieve my fertility. 

And I started to write a piece because I'm part of a working group, a group of physicians working together to learn more about fertility and pediatric cancer survivors, particularly those who have received immunotherapy, because there are a lot of new agents that we don't know as much about when it comes to fertility. And as I was working with this group, I started writing this piece on my own. And then I was about to submit the piece just to the group to show them my personal reflection when I took a pregnancy test and it was positive. So then I took seven–

Dr. Lidia Schapira: -other ones

Dr. Maggie Cupit-Link: I was not, I didn't believe any of them. Then finally I called my sister, and she told me that I was not acting like a doctor, that it was very obvious I was pregnant. And so then I went to see my doctor, but I found out I was six weeks pregnant right at the time of finishing this piece. And at first I thought, “Well, I can't write this piece anymore.” But the more I thought about it, the more I thought, “Well, either way, it shows that us oncologists really need to learn more about fertility.” And I'm very blessed and lucky to have this ending in my story, but it shows that there's a lot of missing information out there.

Dr. Lidia Schapira: That was an amazing answer, and I have about five different topics now that I want to discuss with you. But let's start with the end. And that is your baby. How old is your baby now?

Dr. Maggie Cupit-Link: So her name is Lila Jude. Two days from now, she'll be seven months on June 12. Her name comes from the family name Carlisle. That's where we got Lila. And then Jude comes from the Patron Saint of Hopeless Causes, St. Jude, but also the hospital that treated me and where I've trained, St. Jude Children's Hospital. So that name was very significant for us.

Dr. Lidia Schapira: So I'm getting goosebumps and teary just to hear you tell the story. Let's start a little bit with some of the themes that you touched on. The first is when you've said that you've always used writing as a way of processing emotionally complex situations as a patient, now, perhaps as an oncologist. Tell us a little bit about the book that you wrote about your experience.

Dr. Maggie Cupit-Link: Sure. When I was in treatment, I wrote a lot of entries in my journal, and it was just a way for me to process things. I think sometimes, for me, I don't know exactly what I feel until I write it down and make myself reflect on it, because I'm a busy body. I'm constantly going and doing. And so during chemo, I couldn't really do it. I had a lot of time to sit, and so I needed to write. And my grandfather is a retired Professor of Christian Philosophy. And during my year of cancer therapy, he and I started writing letters to each other because I had a lot of questions, understandably, about God. So the title of the book is actually “Why God?: Suffering Through Cancer into Faith.” And it's a lot about doubt and my anger towards God and what I would see in the hospital around me, the children who were dying from cancer, who even had it worse than me. It felt very impactful to my faith. 

But ultimately, through my conversations with my grandfather, he taught me a lot about another way to understand God, another way to understand faith in spite of horrible suffering, which I think is a thing for a lot of people because a lot of people in this world suffer. And so eventually we published a book. During medical school we published it, and it was a compilation of my journal entries intersected with his letters. And so part of it was really personal and raw and journal entry, and part of it was Christian philosophy. So it was an interesting combination.

Dr. Lidia Schapira: Well, Maggie, I will definitely now have to get your book and it'll be on my list for summer reading. So you touch on some of the fundamental, sort of ethical, moral principles of our profession, which is suffering and how we deal with suffering. And you've had a lot of time to reflect and philosophize and also experience this, as well as loss. Can you tell us a little bit about how your experience of loss has evolved over the decade of survivorship? 

Dr. Maggie Cupit-Link: I think initially, loss, for me, meant a lot of different things than it does now. I felt like I lost a lot when I was sick because I had to give up a year of college. I lost my tibia and knee bones. I have a prosthetic knee and tibia now, internal, and they function very well, but I don't have a real leg. I lost, of course, in chemo, you lose your hair. I lost a lot of tooth enamel. I lost a lot of friends because I was a teenager, and teenagers don't handle illness very well. People were afraid to talk to me. And then, of course, I lost my ovarian function. For a while, I think I focused on that a little bit more than what I had gained. But over time, it became very obvious to me that despite all the loss that I had during my year of cancer therapy, I gained a lot more. I gained a lot of perspective and a lot of emotional depth. And then ultimately, what directed me to my career decision. I knew I was wanting to be a doctor before I had cancer, but then after that year, I knew exactly what kind I would be if I got through the year. 

But I think one thing I've had to learn apart from that is being able to feel loss, even when you have so much. Because I have a lot of gratitude and I have so many good things in my life now with my health and my husband and now my baby and this wonderful career. Even though I have all those wonderful things, I'm still allowed to feel loss sometimes because I will be susceptible to late effects and there will be things in my life that are not quite normal because of going through cancer therapy. And then, of course, the other layer of loss is the people that we lose along the way. If you see behind me in my office, there's a picture of a little boy on the shelf up there. He was my good friend when I was sick. His name is Odie, and he died from hepatocellular carcinoma. When we were sick, he was a good bit younger than me. He was like a little brother to me during therapy. 

The loss of his life definitely propelled me forward to try to change more for other kids. And I think one thing I struggle with now as an oncologist and I'm still learning to do, is process the loss of my patients as it happens. I think I'm lucky that when I lose a patient, when a patient loses their life, I still see the beauty in what I was able to provide for them and their family. That's still a gift. I feel that it's important for me to grieve the loss of their lives, and I'm working on finding, like, the best way to do that for me over time. 

Dr. Lidia Schapira: You will find a lot of reflections on this topic in the pages of Art of Oncology over the last 20 plus years. I think that is a very, very common theme. I'm really impressed with how well you just understand the importance of this, to stay emotionally healthy and resilient. 

My next question addresses that a little bit, and it has to do with processing the early experience of being a cancer survivor. As a young medical student and as a young physician, what was that like for you? 

Dr. Maggie Cupit-Link: I think early on, I had a lot of guilt when it came to being a survivor. This concept of survivor guilt, I think you can read about it as well, and I'm sure there are some articles in the Art of Oncology about it. But the idea that, like, ‘why me?’ and when I encounter patients who go through similar diseases or experiences that won't have good outcomes, ‘why? Why me? Why did I get a good outcome and they didn't?’ And so early on, I struggled with that more. I felt guilty about it. I think over time, I recognized that the guilt– I mean, I always knew it was illogical. That doesn't mean we don't feel it. I think over time, I've recognized the guilt as unproductive. And so I tried to empathize with myself about it and acknowledge that I feel guilty. But then instead, what can I do with this feeling that's helpful? So where can I put this? What can I do to make things better for somebody with it? And I think that I've been able to do that better as time has gone along. 

I also think that early on in my survivorship, I thought that I had even more ability to understand patients' perspectives than I did. And I learned quickly that everybody's experience, even another 19-year-old with Ewing sarcoma who had to leave college, is so different. And so I've been humbled along the way in learning that just because I understand part of their experience does not mean I understand their experience all the way, and that I should never assume that I do. I should always listen and wait to try to understand more about what's different about their perspective. 

Dr. Lidia Schapira: I'm surprised a little and maybe delighted to hear the wisdom in your words. You are so young and yet you know so much. Did you have any mentors during medical school and residency who helped you process this? And then playing it forward, how do you imagine now that you're going to be an attending, mentoring others who may be the young Maggie and come under your tutelage?

Dr. Maggie Cupit-Link: I've had a lot of mentors, for sure, in life. I've been in therapy pretty much my whole life. I'm really lucky that my grandmother is a PhD psychologist and she's a clinical counselor. And so from the time I was a child, if there was ever a problem, I would go see a therapist. There was no exception to that, especially when I became sick. And then in the aftermath of that, I've frequently been seeing a therapist, and that really helps me gain wisdom. I think that's been one big source of mentorship. 

But there have been other providers that have been big sources of mentorship for me for this. One was actually a good friend of mine. Her name is Beth. She's a physician, a clinical research physician scientist at St. Jude, and she was a fellow when I was a patient. And we became friends back then. And then when I went back to college afterwards and then medical school, I shadowed her a few times. I did an away rotation with her once at St. Jude while I was in medical school, and during that time, I remember meeting a boy with Ewing sarcoma. And I remember walking into the room thinking, “Oh, this is great. I totally get this. I'm going to be so helpful to his mom.” And I quickly learned that he had metastatic disease, which meant, really, we had a different disease entirely. And that when I told his mother about me, I almost felt like it made things worse because she knew that my outcome was different than her son's was going to be. And I remember Beth afterwards reflecting with me, saying like, “Yeah, it is true. Everyone will have a different story, even if you understand a lot.” I think she told me, “You don't always have to tell people your experience in order to use your experience.” And so that was one of the ways that I learned. I don't have to share everything upfront in order to still have so much empathy and compassion. 

And then I've also had the honor to work with many doctors who have just role modeled, listening really well and really good bedside manner and compassion. The physician who treated me, Dr. Pappo, still works at St. Jude, and so I've gotten to work with him a little as well, and he role modeled wonderful bedside manner. And then my primary research mentor as well, Dr. Federico has taught me a lot. And just watching her with our shared patients and the way she tells family news and the way she explains things has been really helpful to me, too. So I would say a lot of mentors and a lot of therapy.  

Dr. Lidia Schapira: I like that combination. Clearly, it's been very productive and useful for you. Tell us a little bit about choosing to work in this field after your personal experience. I mean, it sounds like you were headed to St. Jude's to a laboratory to do research even before the diagnosis, but one could easily imagine that you would have chosen to become a dermatologist after this, or somebody who was not totally immersed in this culture of cancer and also a lot of grief and suffering, as we've just said before. Tell us a little bit about your research passion and how these two themes in your life, your personal experience of cancer and survivorship and your research, have meshed.

Dr. Maggie Cupit-Link: Well, I think I knew that I was going to do this career in some capacity when I was watching the kids around me during my treatment. And I think this is one of the reasons why it was so important for me to be treated at a pediatric institution. I know that the AYA population is sometimes treated with adults and sometimes children, and I would advocate that being treated with children is helpful because children are miraculous, resilient creatures. And I remember deciding that I was going to have to fix my attitude during chemo because I was very depressed and very angry and deciding that maybe it would help me if I could just play with the kids in the waiting room and try to distract them and make them have a better day. And so I decided I would try to do that for myself, but ultimately they distracted me and made me have a better day. And so the more I was around the kids, the more I knew that they just hold so much optimism and innocence and light that I feel that we lose as adults. And I wanted to be around it. So in a way it was selfish that I would choose this career because I just wanted to be with them, but also knew that if I was going to go through all this nonsense, I better use it. That was very motivating for me. 

And I think it has been a gift from my experience and maybe my therapy and who knows what else that I'm able to take the bad and the grief that I experience personally and use it to feel differently about the grief that I feel as a doctor. I think I feel differently about loss than my colleagues. It's still hard when I see patients suffer, when patients lose their lives, it's still hard. But I think it's hard in a different way than it is for some of my colleagues. And for some reason, I think I feel more comfortable in that space. I think I feel comfortable around that.

Dr. Lidia Schapira: Tell me a little bit more by what you mean by saying that it is hard, it has to be hard, but it's hard in a different way because of your lived experience. Tell me a little bit more.

Dr. Maggie Cupit-Link: I think I'm not uncomfortable around suffering and death. I think I feel very comfortable around children who are suffering and children who are dying, doesn't scare me and doesn't make me feel like I need to turn away, because I feel it's familiar in a sense. And I think I also, having been the patient who received so much comfort and support and love from providers, should I have died, I still would have valued all of that support so much that allows me to value the support that I'm giving, even in the face of death.

Dr. Lidia Schapira : Maggie, you're amazing. Tell us a little bit about your research and your plans now that you're going to be finishing your formal training? Where will we find Maggie in a few years? What will you be doing? What will we be reading?

Dr. Maggie Cupit-Link: Well, I have really enjoyed doing clinical research. Back in college, after I finished therapy and went back to school, I did join a couple different St. Jude labs and did a variety of different things. But I was not a natural in bench research. I broke a lot of things. I'm very clumsy. It was not my area. I was not good at it. And that's okay. I've decided to come to terms with that. I love science itself and it's been really wonderful to get this Master's in Clinical Investigations throughout fellowship because I could directly apply a lot of those skills to my research in clinical research. And so I'm really passionate about writing and helping with trials, clinical trials, but specifically would like to help with trials that focus on acute and late effects of toxicities. One of my major research projects has been creating a prospective study to evaluate the early late effects in high risk neuroblastoma survivors. And I chose that population because they receive all the therapies that you can imagine, the kitchen sink, and some novel immunotherapies that we don't really understand fully yet in mechanism of action, and so things like that, as well as evaluating acute toxicities and interventions for those. I distinctly remember every inpatient chemo that I experienced turning to my mom and saying, “There has to be a better way,” because my burden of side effects was really high. And I just remember saying, “There has to be a better way.” And my mom would say, “Yes, there has to be. You can figure that out one day.” So I do, I hope I can make some small changes in the way we give conventional therapy and the way we handle side effects as well as prevention of late effects. 

I am currently collaborating with  Children's Oncology Group on one of their projects in the late effects of neuroblastoma, and I hope to continue collaborating with that group as well as my career advances. I'll be an attending physician at Cardinal Glennon Children's Hospital, which is a part of St. Louis University. And I have family here in St. Louis. My husband is a dentist here with his dad. They have a practice together, so it was really important for us to be here. And this hospital is a charity hospital as well, which I really think is a wonderful thing. And that makes me feel a little bit tied to St. Jude, since it's a charity hospital as well. And so I hope to be able to continue some of the clinical projects and some collaborations with the COG as I take care of patients. And I do hope to continue writing other stuff as well. 

Dr. Lidia Schapira: Maggie, I have to ask you one last question, and that is that in your piece you say you were 19 and fertility didn't matter to you then, and you couldn't have understood then or couldn't make space for the later. Now that you are where you are and you're dealing with young adults who may be your patients in similar situations, tell me a little bit about how you think about involving the parents perhaps in this conversation or sort of making space to attend to some of these very thorny issues that may have so many repercussions on future health.

Dr. Maggie Cupit-Link: I think it depends on the patient of course. Because, as you know, some patients can't have a conversation about fertility based on medical acuity. But when a patient has the luxury of time, I think that that's just not a discussion I rush through. And I agree with you that using the parents perspective would be incredibly helpful. I think, I've had a few older patients that I discuss this with, and they're all different because I even had a 17-year-old patient who told me she wanted to be a mom for sure. And so she was different than me and that she already knew that was important to her. But when people think it's not important, I just encourage them to think about it more and talk to their parents about it and to remember that who they are today is not who they were 10 years ago, and who they're going to be 10 years ago is not who they were today. And that this is something you can't time travel with. This is your chance to make a decision. And really, the fertility preservation methods, generally, they're pretty safe and not traumatizing. And so it's sort of like, why not just go ahead and do it? Especially if the institution you're a part of is offering it. And I think there are a lot of ways to get funding for that, too.

Dr. Lidia Schapira: Well, you are definitely a champion.

Dr. Maggie Cupit-Link: Thank you. 

Dr. Lidia Schapira : I know that our readers and our listeners are going to follow your career, and I thank you so much for your thoughtful essay and for agreeing to this conversation. It's been a real pleasure.

Dr. Maggie Cupit-Link: Well, thank you. I have one more thing to tell you before we end.

Dr. Lidia Schapira: Yes, tell me. 

Dr. Maggie Cupit-Link: So after I had the baby, my doctor and I decided we would wait to get on birth control until we saw if I was going to go back into menopause or not. We waited, and then I got pregnant again. And so I am 16 weeks pregnant with a baby boy this time. And so I'll have my second child 12 months after the first.

Dr. Lidia Schapira: Oh, my goodness.

Dr. Maggie Cupit-Link: It is a blessing. But after that, I might have to consider birth control to space some- plan, space some people out a little bit. But we're very excited.

Dr. Lidia Schapira: The gift of your survivorship is now in your 30s. You need to have that conversation about family planning that most people and couples have earlier on. So congratulations. Congratulations.  

Dr. Maggie Cupit-Link: Thank you so much.

Dr. Lidia Schapira: Beautiful way to end. And to our listeners, until next time. Thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

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Guest Bio:

Dr. Maggie Cupit-Link will be a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, Missouri.

Additional Reading:
Why, God?: Suffering Through Cancer into Faith, by Margaret Carlisle Cupit, et al

Listen to ASCO’s Journal of Clinical Oncology essay, “Cardio-Oncology” by Dr. Daniel Rayson, clinical oncologist at Queen Elizabeth II Health Sciences Center. The essay is followed by an interview with Rayson and host Dr. Lidia Schapira. Rayson shares a personal experience working with a patient who has two life-threatening diseases.

TRANSCRIPT

Narrator: Cardio-Oncology, by Dr. Daniel Rayson (10.1200/JCO.21.00971)

 I was asked to see a 64-year-old man in the coronary care unit (CCU) 4 days after he collapsed in his driveway after a seemingly normal day at work. His wife told the paramedics that he had been having episodes of chest pain in the past 2 weeks leading up to his dramatic homecoming and he was diagnosed with a myocardial infarction in the emergency room. An urgent cardiac catheterization revealed critical three-vessel coronary artery disease, and on the basis of his otherwise pristine past medical history, he was recommended to undergo coronary artery bypass surgery.

His admission blood work, however, revealed a hemoglobin level of 91, much lower than the last available value of 137 roughly 1 year before. When questioned, he described having difficult bowel movements over a 3- to 4-month period with occasional blood-streaked stool. A computed tomography scan quickly diagnosed his second critical problem, a locally advanced sigmoid colon cancer with multifocal hepatic metastases.

I was asked to see him urgently to help adjudicate the appropriateness of proceeding with the cardiac surgery in the face of a second competing life-threatening condition and to help the cardiology team elucidate the goals of care in the context of his oncologic prognosis.

I had not been inside a CCU since the depths of my residency days and walked in awkwardly while trying to convince everyone that I belonged amid the ventilators, central lines, and constantly pinging monitors. Shuffling through the nursing station, I passed a bank of video surveillance screens that would not have looked out of place in a high security prison and despite being completely disoriented, I managed to find my patient. As I squeezed into a chair between the IV pole and the movable side table upon which lie the prized possessions of the hospitalized, I took mental note of the photo of his beaming family gazing up at him. I introduced myself and tried not to let the pinging cardiac monitor distract me from the discussion or add to the headache that was already beginning to pound. He seemed to become paler before my eyes as I slowly explained the scan findings to him. His liver was peppered with variably sized metastases, too many to reliably count, I explained in answer to his question. Although there was no biopsy confirmation of his disease, the constellation of clinical symptoms, blood work, and imaging left no room for doubt.

“So, what am I in for,” he asked.

I carefully explained why all therapies for his cancer would be noncurative in intent and why surgery would be limited to an urgent need to remedy bowel obstruction but would not change his overall prognosis.

“Can't they just fix this at the same time they'll be fixing my heart?” he then asked.

I circled back to why surgery could not deal with all of his disease and then spent the rest of the discussion talking about chemotherapy and the goals of treatment, which were to help him live as long and as well as he could with his cancer.

“Until …?”

“Until you die from the cancer,” I responded bluntly.

“So let me get this straight … they want me to have surgery on my heart so that I can end up dying from my cancer? Do I have that right doc?”

Oncologists are experts in reframing prognosis and expectations in the face of metastatic, incurable disease. It is an important part of our jobs to be able to convince people that the median survival time of 2-3 years for metastatic colon cancer is something to cheer about. It is equally important that we are able to clearly explain that a median is just a point estimate, without direct relevance to the individual in front of us, and that we are often unable to predict how close to and on what side of that median the future holds for them.

“I guess that's right,” I replied, my eyes not leaving his.

“It's a question of what would get me first,” he stated.

I nodded, “In a sense, you know the answer already.”

“Yes, I could have died in my driveway, that's true. I guess I just about did.”

“As close as anyone can come to just about dying in their driveway, yes, you just about did.”

“But if my heart does it, it will be quick, right? No pain. No drama. Just an ending, like almost happened?”

I nodded.

“But cancer-that's a whole other thing. Pain, vomiting, chemotherapy, weakness. Suffering. For me and my family.”

I explained the lengths to which we try and control pain and other symptoms, from both disease and treatment, and reviewed the medical and supportive care that is designed to minimize suffering.

“But doc, how often does that happen? How many times can you truly say that you were able to minimize suffering? And not just for your patients, what about the suffering you don't see? For my wife, my kids. How do you take care of their suffering as they spend the next 2-3 years, if I have that long, slowly watching me die of cancer?”

By then, my headache was screaming at me. A hammer behind each eye was slamming down on chisels angled to the center of my brain. The incessant pings, beeps, and buzzes of the monitors and machines were laughing at my discomfort. We kept circling back to the competing timelines of two life-threatening illnesses, the dramatically different trajectories they take to death, and the different types of fallout and collateral damage to be expected.

After an hour together, he had decided that death later would always be better than death now, and as we warmly shook hands, he turned the family photo toward me as final confirmation of the motivation behind his decision.

I spent a few minutes collecting my thoughts and trying to soften the hammer blows to my head with some deep breathing and ibuprofen before venturing to the work room to dictate my consultation note and find the attending cardiologist.

“Thanks for seeing Mr L, what do you think?”

The chief cardiac surgery resident had found me first. It was not everyday that an oncologist is needed in the CCU. I was not as incognito as I thought.

I explained the onco-scenario in detail and could sense the disappointment when I came to estimates of life expectancy. A median survival of 2-3 years after a bypass would be woefully inadequate from the perspective of a cardiac surgeon, whereas, for an oncologist, it represents a realistically optimal outcome with current therapeutic options. If an otherwise healthy patient survived cardiac surgery—an increasingly expected outcome given current technology—they are fixed and unlikely to ever suffer a cardiac death. An otherwise healthy patient with a metastatic cancer, however, is never healthy again. I could never fix Mr. L.

I spent some time trying to convince the resident that the value of whatever time is left for any one patient is known only to them. And that the risk-benefit equation that underlies any medical or surgical decision is always assessed from the vulnerable position of the unwell with the ultimate decision usually made on the basis of parameters beyond medical or surgical outcome expectations. I noticed his eyes looking beyond me and knew that he was barely listening to my philosophical explanation as to why I recommended proceeding with the surgery.

In the end, Mr L underwent a three-vessel coronary artery bypass graft, which he sailed through without complication.

I took care of him for the next 4 years, sequencing both chemotherapy and targeted therapy as his disease waxed and waned in threat until finally there was no stopping it. I got to know his wife of 31 years who along with their three grown children celebrated the arrival of their first grandchild during one of his visits to the chemotherapy unit. I saw photos of family milestones along the path of his cancer journey and laughed with him when he was teased about his chemo-good looks. I wrote letters that he took with him on family trips to give to border control if he was asked about his narcotic medications or to medical personnel if they needed background and guidance if he got sick. He always told me that the letter was more important than his passport, knowing that there would be someone at the end of the line to help him and his family if he got into trouble.

A few weeks after he died, I ran into one of my palliative care colleagues who I knew was involved in Mr. L's last weeks. He confirmed that he passed away peacefully and in comfort. His wife and three children were with him, and his favorite music was playing as he became unresponsive. I gave him my thanks for helping with his care and for allowing him to die in peace and turned away to walk back to the clinic.

“Oh, one more thing,” he called out.

I turned back in mid-stride.

He told me to tell you that he was glad he did not die from a broken heart.

 Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Shapira, associate Editor for Art of Oncology and professor of Medicine at Stanford University.

Today we are joined by Dr. Daniel Rayson, clinical oncologist at Queen Elizabeth II Health Sciences Center. In this episode, we will be discussing his Art of Oncology article, Cardio Oncology. At the time of this recording, our guest disclosures will be linked in the transcript.

Daniel, welcome to our podcast and thank you for joining us.

Dr. Daniel Rayson: Thank you very much for inviting me to be here with you today, Lidia.

Dr. Lidia Schapira: It is a pleasure. I'd like to start by asking you some questions about your process for writing. You have written essays before and published them in many venues. What sorts of clinical episodes trigger your desire to write, reflect, and then what leads you to want to share them with readers?

Dr. Daniel Rayson: That's a loaded question, but thanks for asking it. So, as far as the clinical scenarios, it's those episodes in routine practice that somehow get under my skin in one way or the other, whether it's due to a strange diagnosis, an unusual reaction or interaction I've had with the patient and/or their family, a challenge in clinical management, an end-of-life experience that's particularly touching or emotional, or increasingly for me, the juxtaposition of different stories amongst a group of people with perhaps somewhat similar diseases. So really very varied. It's interesting because sometimes it's only weeks after the fact I realize that something had affected me, and then I'll make a note in my phone and at some point I'll come back to it and start fleshing out themes that I think are worth exploring. And over time, and it's usually quite a bit of time, a story basically evolves.

Dr. Lidia Schapira: You're an amazing storyteller. So let's focus a little on this particular story that you're telling and bring us to the bedside.

Dr. Daniel Rayson: Yeah, so this is a story - all my essays are really absolutely true life - and I was called to the CCU for a patient who had just suffered a myocardial infarction and needed a three vessel bypass and at the same time was diagnosed with metastatic colon cancer. And probably the last time I had been in a CCU was maybe 15 years ago, I certainly can’t recall. But, the juxtaposition of this fellow being faced with two life-threatening diseases, one of which would kill him very quickly as he collapsed in his driveway, leading to the CCU admission, and one of which would kill him in years to come, became a juxtaposition, if I can use that term again, that really stuck with me, both in terms of decision making, competing threats to life, the personal motivation of the patient, and trying to discuss the time frames with the cardiologists who have very different perspectives on clinical success by what they do.

Dr. Lidia Schapira: I thought it was so interesting that you write that you have this hour-long conversation and more with the patient at bedside, and the patient says to you, ‘So, are you recommending that we fix my broken heart so I can die of cancer?’ And that is just about as direct as it gets. And then you're explaining to the chief resident in cardiology for whom the two to three-month median that you're saying is likely life expectancy for somebody with this diagnosis, it just doesn't seem to be good enough. And there you are sort of juggling time estimates and trying to assign value to time left and time spent without ever having met him before. And then you tell us, and this is the part that I wanted to ask you a little bit about, that you have a splitting headache. How did that moment feel to you?

Dr. Daniel Rayson: Well, even walking into the CCU, we get used to our environments, right? I'm sure that you as well, you walk into your cancer center, your home, everybody knows you, you know, everybody knows what everything is. Try walking into the CCU after having not been there for 15 years, and you are like a rat in a maze, completely out of your environment. So I was uncomfortable in the first step into the CCU. It just exponentially increased from there. Once I got to the bedside, face to face and talking in my little zone of oncology, everything seemed to settle. But as the discussion became more complex and all the monitors and all this stuff around this patient, yeah, I had just a pounding headache. And it didn't help talking to the CCU resident, who really had a hard time grasping what I think I was trying to convey.

Dr. Lidia Schapira: And so your patient chose to have the surgery, and then he was under your care, you tell us for four years, during which you must have built a very solid therapeutic relationship. So did you and your patient, I wonder, ever go back and discuss what that consultation was like for him?

Dr. Daniel Rayson: He was a very jovial kind of fellow with a great sense of humor. So we would come back to it every now and then, but only very glancingly in a way, ‘Remember how I looked then, Doc, before your chemo got me? I looked pretty good in the CCU compared to now, right?’ That was his kind of attitude as we went through. It would come back to him, but not in a negative way at all. The interaction actually ends up being extremely positive, even that day. And we built on that going forward.

Dr. Lidia Schapira: And his last words spoken to you through your colleague in palliative care just made me tear up. We often wonder if we did the right thing by our patients, and he basically told you so. Can you tell us what those last words were and how they felt to you?

Dr. Daniel Rayson: Yeah. So this is again all true fact, basically running into the palliative care doctor who took care of him just his last days. And I was turning back to go to the clinic after thanking my colleague and he literally called out, ‘Oh, and one more thing. Mr. L told me to tell you that he was really glad he didn't end up dying from a broken heart.’ I still kind of tear up when I think about that. It was kind of the ultimate thanks, really. I mean, he was very grateful all the way through, as was his family. That was probably the ultimate thanks. And that stayed with me for a long, long time. Obviously, still has really.

Dr. Lidia Schapira: What I found so artful, if I may use that word, is that you take the reader to this very, very emotional, private moment and then you chose a title that couldn't be less emotional, ‘Cardio Oncology’. And I remember in the review process we asked you about that. So tell us a little about that choice.

Dr. Daniel Rayson: I don't know if I can answer that clearly in a way that's satisfying to anybody except to say that Cardio Oncology has become this sub-practice of cardiology. Many centers have Cardio Oncology programs, research, et cetera. As I was writing this, I thought this has to be the title. This is the ultimate Cardio Oncology. This is it. And I stuck with it despite some discussion back and forth. I still think I'm glad we kept the title as it was.

Dr. Lidia Schapira: It's so factual, right? And it's distracting because you read the title and you don't expect this essay, which is all about communication, connection, human relationships, and lived experience.

Dr. Daniel Rayson: Exactly. And again, I think every subspecialty or little niche in oncology has got to have those basic communication and the whole story at the heart. And I guess maybe that was part why the title.

Dr. Lidia Schapira: Yeah. You just mentioned the word communication. I wonder if you can reflect a little on the art of communication and communication skills for those of us working with patients with life-threatening illness and the art of storytelling. Do you see a connection and how do you experience that connection?

Dr. Daniel Rayson: Oh, I really do. I think being open to the story is not only meaningful, but is really imperative to optimize communication. Oncology, particularly in the era of precision based medicine and all the high tech things, is very easily led down a very technological pathway. But in the end it's the patient in front of us, or family, like we all know. And the story is what grounds all the connection, all the understanding of preferences, motivations, decision making. And in the end it's what impacts us as people and as clinicians as well as our patients and families. So I see the story as integral in terms of teaching communication skills and taking time to listen, taking time to feel the story and be open to the story unfolding and realizing that, yes, it is a story. Every single case is a story I think is a helpful way to look at, broadly, communication.

Dr. Lidia Schapira: There's another thing that I wanted to ask you, and that is, do you have any idea of how long it takes for the full story to emerge? It seems to me that you've been very patient with the stories you tell. You wait until years pass, sometimes until the relationship is complete, until there's a natural end to the story. How long does it take for these stories that you tell so beautifully about clinical practice actually to mature in your mind and then on paper?

Dr. Daniel Rayson: That's a great question. And sometimes I'm very jealous of authors who seem to be able to really churn out work that's important to them. I've learned that's not me. In most cases; it takes a year or two beyond my first note and my phone call to come back to it. And I think what I've learned is that giving it time always, for me, maybe just for me, optimizes quality. Rushing, sending it out too early, just doesn't work. Just doesn't work. For some reason, I need to give it the time it takes, and it's a good one to two years on average.

Dr. Lidia Schapira: It's interesting to hear you say that. It's taking me about twenty years to write the story that I'm trying to tell. And so it's good to know that there are some of us who seem to need that extra processing time.

As somebody who has been so thoughtful about the stories and practices, how do you see the storytelling helping us sort of stay fresh and find joy in practice as, in a way, an antidote to burnout?

Dr. Daniel Rayson: Yes, I think that stemming from a bit of an earlier question, is that being open to the story and the heterogeneity of the experiences that we deal with is affirming in humanity and our clinical practice. I think we can all get very tunnel vision and very tunnel focus so that everything starts sounding and feeling the same, which is, I believe, a prelude to sub-clinical burnout. Whereas taking the time to understand and feel the stories, and looking at people in their situation as stories, is a bit of an antidote to that. I like that word. I like that word. Not fully effective, sure, but, I think, a tool in our box.

Dr. Lidia Schapira: My final question is this: after all these years and all this time thinking about it, if you were to walk into that CCU and could replay that scene, would you have done anything differently?

Dr. Daniel Rayson: I think the only thing I probably would have taken a couple of extra strength ibuprofen before I ventured into the CCU.

Dr. Lidia Schapira: That's so wonderful. And with that, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcast.

Dr. Daniel Rayson: Thank you very much, Lidia. It's been a pleasure.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

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Guest Bio:

Dr. Daniel Rayson is a clinical oncologist at Queen Elizabeth II Health Sciences Center.

Listen to ASCO’s Journal of Clinical Oncology essay, “How Are You, Choi-Seonsaeng?” by Dr. April Choi, a Hematology and Oncology fellow at Tufts Medical Center. The essay is followed by an interview with Choi and host Dr. Lidia Schapira. Choi discusses how navigating US healthcare is similar to acclimating to a foreign country.

TRANSCRIPT

Narrator: How Are You, Choi-Seonsaeng?, by April Choi, MD (10.1200/JCO.22.02103)

It was not until Mr. Yoon’s nurse contacted me (an intern eager to flex her Korean skills) for an “agitated patient who is trying to leave the hospital” that his limited knowledge of English became apparent to everyone.

Mr. Yoon was sent down to the radiology department for an additional computed tomography scan earlier that day. He had been admitted for partial bowel obstruction secondary to a colonic mass. After his scan was completed, a technician reportedly told him that he was “good to go.” As soon as he arrived back in his hospital room, Mr. Yoon, happily thinking that he was being discharged, began to pack his belongings and changed out of his hospital gown. The nurse, aware of the team’s plan for his upcoming hemicolectomy but ignorant of what had transpired downstairs in radiology, interpreted this as the patient trying to leave against medical advice.

I ran into his room, ready to de-escalate the situation, only for him to turn happily around and ask in Korean, “how are you, Choi-seonsaeng?” (seonsaeng means a teacher, but here it is used as an honorific for respecting the person to whom it is addressed).

His hospitalization was already difficult because of a lack of family support; his surrogate decision maker was a fellow church member of whom he had “asked for a favor.” To add to this, his English was just good enough to cause more harm than good. Had he not spoken any English, more people would have defaulted to using an interpreter. Instead, he knew just enough English to convince his doctors and nurses that he understood his treatment plans, and they would leave his room each morning satisfied when he would smile, nod, and say “no questions.”

I could empathize with the struggle that he had in this hospital. As a 1.5-generation (those who immigrated before or during their early teens) Korean immigrant growing up in California, I quickly became an expert in appearing unfazed by something, even if that thing seemed very odd to me at first. Things like adults asking me to call them by their first names. Following my friend into their living room without taking off my shoes.

Someone telling me, “I see where you’re coming from,” when I had been sitting down and talking to them for the past 15 minutes—I was not coming from anywhere! In most of these situations, my strategy has always been to smile, nod, and try not to say anything that might sound incredibly stupid. I am fairly certain others implement similar strategies when navigating different cultures as they travel in foreign countries. After all, most of us do not harbor the communicative finesse that Anthony Bourdain had while interacting with the locals in Parts Unknown. For many of us immigrants, “smile-and-nod” ends up being the default response in unfamiliar or uncomfortable situations, such as in hospitals.

I can attest that this sense of “foreignness,” or “Asianness,” never quite goes away. Although my parents would increasingly comment that I “act like an American,” and even after I had been living in the United States longer than I had in Korea, my Korean-ness stuck around.

Sometimes more, sometimes less, very much like the awkward lilt in my English that made people ask, “so where are you really from?” I would prick my own thumb with a needle if I had indigestion because I was told it would get out the bad blood. When I got nauseous, I would make myself jook, or rice porridge, because it was the only thing my stomach could tolerate. I continue to identify as a Korean—maybe Korean American on some days, but never fully just American.

On my last day of service, Mr. Yoon was still waiting to get his hemicolectomy. As I explained the general plans involving surgery followed by chemotherapy, he asked if there was any way he could have some jook before his upcoming hemicolectomy. He had been ordering oatmeal, but it “wasn’t right.”

I could only eke out, “I’ll look into it,” before I ran out of his room and straight into the unit’s physician’s workroom. There I started crying and babbling incoherently to my non-Asian co-intern about jook and how I simply must get some for Mr Yoon. Although crying in a workroom for sleep-deprived and overworked interns might have been a rite of passage in my residency, I cried because it had finally dawned on me that Mr. Yoon was terrified of his diagnosis.

This gentleman, who was more than twice my age but still made my day by referring to me as a seonsaeng, had been smiling and nodding his way through the uncertainty of his cancer diagnosis and what was to come. He wanted something he was accustomed to, something he could bank on to make him feel better.

For him, like many Koreans I know, it was the jook. Unfortunately, he had no friends or family checking in on him, let alone bringing him food that he enjoyed. For him, finding a way to get some comfort through jook was more important than hearing strangers give reassurances of “everything will be fine” and “we have a plan.”

On that day, I was reminded of when I moved to a strange new city for medical school, forlornly eating dinner by myself when instead I could be surrounded by my family and talking about how our day went. I understood the sadness you feel when you are sick and too tired to do anything, but you are cooking your own jook because your mother is not there for you.

I empathized with wanting to eat food that you are accustomed to and the distress you feel when you are unable to find it because of where you are or the situation

you are going through. In my family, food is both comfort and love; sharing food is how I know I am cared for.

For Mr. Yoon, it was not just about food but rather the lack of support he felt during his upcoming cancer treatment. I ended up getting some jook delivered to our hospital that day. I recall muttering something about wishing him an uneventful surgery as I tearfully handed him the plastic tub of jook. Several months later, I was paged to the hospital unit and found Mr. Yoon waiting for me, skin duskier than I recalled but overall appearing well. He told me that on being discharged after surgery, he connected with a Korean-speaking oncologist and completed his chemotherapy.

His oncologist told him his recent scan did not show any evidence of cancer. He said he had been meaning to visit me because he wanted to thank me for the jook I had given him before his surgery. We talked for a bit before I had to leave for my afternoon clinic—that was the last time I saw Mr. Yoon.

Several years and a worldwide pandemic later, I find myself fortunate to be training in oncology in a strange new city again. I am once again reminded of how difficult adjusting to a new area is and then think about how more difficult it is for our immigrant patients to navigate their cancer treatment. Undergoing cancer treatment is very much like immigrating to a different country. You cannot be 100% sure of what may happen in this new country, and no amount of second-hand information from other people can adequately prepare you for what lies ahead. You do not quite grasp the language, so you smile and nod your way through each doctor’s visit and hope things will turn out alright. When you couple this with an actual language barrier, it may feel like being lost in a foreign country without being able to ask for directions.

It is important for us oncologists to dig deeper and understand the cultures from which our patients come. Instead of asking if they are eating well, ask what they enjoy eating. Are they able to eat the food they were eating before? Or are they navigating a new diet planned by a nutritionist who does not know the difference between oatmeal and jook? Have we considered what a patient’s family does to provide support, on the days when chemotherapy is too rough and the nausea is too bad? We may be surprised to find what is hidden behind the polite nods and small smiles.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one, at: podcasts.asco.org.

I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and a Professor of Medicine at Stanford University.

Today, we're joined by Dr. April Choi, a Hematology and Oncology fellow at Tufts Medical Center. In this episode, we will be discussing her Art of Oncology article, ‘How Are You, Choi-seonsaeng?’

At the time of this recording, our guest has no disclosures.

April, welcome to our podcast and thank you for joining us.

Dr. April Choi: Good morning. I'm glad to be here.

Dr. Lidia Schapira: Well, it's afternoon in California, so, it's wonderful that you are someplace where it's morning. Where exactly are you today?

Dr. April Choi: I'm currently in South Korea visiting my relatives.

Dr. Lidia Schapira: That's wonderful, and brings us to the heart of your essay, which is a moving narrative that describes your interaction when you were a medical resident, with a patient who is a Korean immigrant. Tell us a little bit about the motivation that led you to write this article and then share it with others.

Dr. April Choi: First of all, I'm very happy that you enjoyed this article. It comes from my heart, and I've been meaning to write this article for many years now, actually. And I wrote this piece initially a year after I saw Mr. Yoon again. I think one of the things that I wanted to share with everyone is how difficult it could be as an immigrant to navigate the complexities of the hospital, even if you do speak a little bit of English. And I think the cancer part really complicated his care, and I really wanted to make sure that people who might not have this interaction, because they grew up in the United States, or have never encountered someone who is from a different culture, to be able to experience, second-hand, what it feels like to treat someone who is of the same culture, but might not have the linguistic sophistication or experience working in healthcare system.

Dr. Lidia Schapira: You start off the article with a little dose of humor that I found very refreshing - turns out that your patient, Mr. Yoon, is told by an X-ray tech or a CT tech that, "He's good to go." And he interprets that as, "He's good to leave the hospital", only to find that the nurse misinterprets his preparation to leave as, "He's leaving against medical advice." And that's when you enter the story. Bring us to the bedside; tell us a little bit about your interactions with Yoon.

Dr. April Choi: I think, in retrospect, it might have been very funny. I do have to say, when it happened, it was a very stressful time for me. I was not in that hospital unit at all until I got this call, when the nurse was very distraught and said, "You need to come to bedside. He is trying to leave, he's agitated, he won't listen." And as I had written in my article, I ran. I ran towards his room because by then, we had developed some sort of a relationship where he would actually ask me, "Oh, what was that other doctor talking about?" So, we had a really close relationship, and when I heard that he was agitated, I couldn't believe it because he was one of the nicest patients that I had seen before.

And for me to find out that he was under the impression he was being discharged after all this, I was immediately reminded of my parents, and how they speak enough English, where they can get by, but at the same time, I don't think they would be okay in a hospital setting. And I think that goes for a lot of 1.5 generation, as I talked about in my article, as well as the second-generation immigrants, where they understand everything, but for their parents, it's not the case.

Dr. Lidia Schapira: So, let's talk about your parents and our patient here, and then those who perhaps just speak a little to get by. And it's easy to think that in a hospital setting where there's so many time pressures and everybody wants to be efficient, sometimes, things just slip by, and we don't take the time, perhaps, to ask as many questions, because we don't have an interpreter at bedside, or because it takes a little bit more effort. You give these examples so beautifully in your essay. What are you doing now that you're an Oncology fellow, or future Oncologist, to communicate with patients?

Dr. April Choi: I actually do a lot of drawings. I think drawing is one of the strongest ways someone can communicate. So, a lot of the times I have my multicolored pen, and I will draw whichever they need to - if it's esophageal cancer, I will draw them where their cancer is located-- right before my vacation, I talked to someone about radiation fields - I will draw little rectangles, and talk about how, no, reradiation is not possible, for example. I do try to use very simple language, and when I say simple, I don't mean to say that they are any less intelligent than we are because a lot of our patients, in their own language, they're amazingly intelligent and they understand everything. But trying to refrain from using things like, "You're good to go", or some examples that people who never grew up in the U.S. might not know about, such as, one of the examples I had done was, "I see where you're coming from", and everyone seems to know that, except for the immigrants.

Because, “What are you saying? I was sitting next to you; I was talking to you. What do you mean by you see where I'm coming from?” And those things, I think, people don't stop and think about, but once you say, what is the literal translation for this? And say, “Is this something, if I had heard it for the first time, something you understand?” And just taking that time to say, “Maybe this is not the most commonly used phrase.” And then, using a more direct language can really help the patients who are of limited English proficiency.

Dr. Lidia Schapira: You used the expression 1.5 generation, and I know that when we reviewed the article, some of us had never heard that expression. And then, you explained to us that this refers to those who came as teens, or young enough so that they were quick to learn and assimilate into the new culture, but sufficiently grown to really also be firmly rooted in the mother culture.

Tell us a little bit about where you are with this, and how this has shaped the way you've approached your life as a medical student, as a resident, and now, as an Oncologist.

Dr. April Choi: I think it's impossible to talk about my medical education without talking about how I was brought up. I was actually born in the United States but moved to Korea when I was less than a year old. And I stayed there until third grade when I moved to California for the first time, stayed until fifth grade, and I moved back to Korea until middle school, then I moved back to California to start high school, and I've been here since then. So, this moving back and forth, I think, did create a lot of confusion when I was growing up because the two cultures are very different, and the medical system is also inherently very different compared to Korea. And I come from a place where in Korea you could go see a doctor if you're sick, and when I was living in the U.S., our family didn't have health insurance.

So, the first time I saw an American doctor was when I was in high school. And at that time, my brother had dislocated his shoulder, and I remember my mom bringing him to the emergency department, University of California, Irvine. And at that time, she was very polite, she would say, "yes", and smile and nod to whichever the emergency doctor had told her about the dislocated shoulder. But I remember her always turning to me after he left, to say, "What about this? What about the medication?" But she didn't feel comfortable to interrupt this doctor who had come in, and ask about the things that she was worried about - this was her son. He had dislocated his shoulder for the first time. But for her to feel culturally uncomfortable to interrupt them and ask questions, and have all of her questions answered, I think really stuck with me.

Dr. Lidia Schapira: I hear a lot of emotion in your voice when you talk about this, and you bring up issues of safety for people who are vulnerable. How are you dealing with this now that you have so much power, as an oncologist whose patients are placing their life in your hands?

Dr. April Choi: Honestly, I feel blessed and grateful that I'm in a position where I can change things for the better. I'm currently invested in research looking at Asian-American disparity in cancer patients. And having that opportunity where I have the medical language and knowledge to explain things better for patients who are of Korean-American descent, I think is a very encouraging and powerful motivator for me to continue on. So, I think my career trajectory is for me to advocate for the, you know, Korean-American, as well as the other Asian-American patients who are undergoing the same situation that Yoon and my family were going through.

Dr. Lidia Schapira: It's a beautiful story that links your attachment to culture and family, and provides the inspiration that is now driving your career as a researcher, and somebody who really is going to use all their knowledge to advance this field. I imagine your family must be enormously proud, but let's just finish by talking a little bit more about this lovely gentleman, Yoon, and his need for jook, that you've told us is not porridge, is not oatmeal but is comfort food and the comfort food that you felt he needed. Tell us a little bit about that - in how food can provide solace, and all the efforts that you went to, to give that to your patient who you felt was really quite frightened.

Dr. April Choi: So, if you search jook and Google, or try to get additional information, they talk about it as if it's the same thing as congee, which is the Chinese version of rice porridge. So, jook actually isn't just made out of rice; it could be made out of combinations, or different proteins. Obviously, rice does play a main factor, but it could be made out of beans, for example, and other ingredients.

But the Korean thought is that if you're sick, you need something that's easy to digest and something that's been cooked slowly so that your body doesn't have to do the work. And one of the main things is the jook. We actually have many jook specialty shops in Korea, often close to different hospitals, for example. It's the main food that's served by the hospitals if you're in-patient, although you might have a lot of different Korean food when you're hospitalized here. I think my experience comes from the fact that if you're scared, you want something that you already know, or you're comforted by - almost like a safety blanket.

And when someone can't even get the basic food that they're used to eating-- if you're used to eating rice every single meal, and then you plop them down in a hospital that gives you toast for breakfast and eggs, and other ingredients that you're not used to, I don't understand how people can expect to feel at home. Is it just because someone says, "Make yourself comfortable"? It doesn’t mean that you have the opportunity to make yourself comfortable if the main food that you eat is not available? And that is something that I wanted to emphasize - that food we think is so easy to arrange for-- we have dieticians, we have nutritionists in the hospital, but we don't really think about patients' comfort that way. And I think it's something that I think about a lot when I'm seeing a lot of the GI patients here, it is a field that I'm interested in.

And for people to keep on losing weight, and for us to keep on asking, "Are you eating enough?" I wonder if that's enough because in Tufts Medical Center, where I'm fortunate to be training in, there's a very significant Chinese-American population. And anecdotally, or at least my experience has been that patients will say, "Oh yes, I'm eating a lot", or nod, and smile and say, "Yes". But if you ask the family members, they say, "Oh, they don't eat the things that they used to." And they don't tell us this because they don't want to burden the doctors with less important things.

But I do think this is very important, and it's something that we need to really talk about, and try to find ways that we can make them feel at ease, and comfort them while we're maintaining whichever treatment that we are giving for these patients.

Dr. Lidia Schapira: So, April, this has been a lovely conversation that reminds us of the importance of good communication, communication across cultures and barriers, and just taking the time to help our patients really feel safe and welcome.

April, we have time for one last thought.

Dr. April Choi: I do want to say that eventually, many years down the road in my career, I do hope to have a situation where instead of me having to explain Asian-American cancer disparity, that we have an opportunity to say Asian-American cancer diversity; that it's not a matter of someone getting less care, it's more important that we get different types of care - a diverse type of care that's catered towards Asian-Americans.

Dr. Lidia Schapira: Well, with that lovely thought, I will leave our listeners until next time. And I want to thank you for listening to JCO's Cancer Stories: The Art of Oncology.

Don't forget to give us a rating or review wherever you listen. Be sure to subscribe, so you never miss an episode.

JCO's Cancer Stories: The Art of Oncology, is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio:

Dr. April Choi is a Hematology and Oncology fellow at Tufts Medical Center.

Listen to ASCO’s Journal of Clinical Oncology essay, “Chasing Milestones” by Dr. Ameish Govindarajan, a post-doctoral research fellow at City of Hope Comprehensive Cancer Center. The essay is followed by an interview with Govindarajan and host Dr. Lidia Schapira.

As a young physician, Govindarajan shares his personal and professional experiences as a cancer patient with non-small cell lung cancer and the importance of shared decision-making between oncologists and patients.

TRANSCRIPT

Narrator: Chasing Milestones, by Ameish Govindarajan, MD (10.1200/JCO.22.01379)

You always remember the moment your world comes to a halt. Everything comes into stark reality, especially the inane—the socks you were wearing or the type of ceiling tiles over your hospital bed. I lay there alone, a medical student in my 20s, chest tubes emerging from my side. My doctor had just informed me that I had 6-8 months to live. I can still picture those ceiling tiles.

What started as an innocuous, yet persistent, cough proved resistant to routine treatment and eventually warranted a computed tomography scan. A cavitary lesion in my right lung raised the specter of more serious possibilities. A bronchoscopy and video-assisted thoracic surgery confirmed the unthinkable—I had stage IV non–small-cell lung cancer.

As a physician now myself, my mind often returns to that hospital room and how the discussion of my disease, my mortality, and my impending death unfolded. My oncologist at the time outlined my grim circumstances: genomic testing could maybe provide some hope, while palliative chemotherapy would only delay the inevitable, as I would be unlikely to see my next birthday. While waiting for my genomic testing results, I reflected on my relationship with my care team, did I feel heard? Perhaps they were right; I would not see my next birthday, but with pieces of my diagnostic puzzle pending, I still had hope. I was a nonsmoker and in excellent health, more important, being a young South Asian man would prove to be a factor that predisposed me to the genomic alteration that would be found on testing.1 In a twist of fate, it was revealed that I had an anaplastic lymphoma kinase gene rearrangement, a result found in fewer than 5% of patients and one that would forever change the trajectory of my care.1 My life as a patient with cancer and a survivor had begun.

The past decade has brought with it a revolution in cancer treatment. The new era of targeted therapies, genomic testing, biomarkers, and immunotherapy has extended patient lives and provided remarkable insights into this life-altering disease. These rapid advances have also brought unexpected challenges, including the provision of care far beyond previous median survival times. As we embark on this new era of expanding treatment options, the importance of shared decision making will become even more critical to patient care in oncology. As doctors and patients work together to plan treatment, integrating the ever-expanding array of tests and therapies, consideration of each patient’s values, goals, and concerns will remain paramount. As part of this model, patients are invited to be part of a treatment team, to learn about their disease, to outline their hopes and fears, and to help contribute to decisions that will guide their cancer trajectory.2

This is not new ground of course; the shared decision model has been embraced by a field that has been moving away from its paternalistic roots. Great strides have been made in promoting patient autonomy, clear communication, and shared responsibility in treatment decisions, with programs such as VitalTalk and the 1-2-3 Project at Memorial Sloan Kettering Cancer Center helping to guide the development of effective communication skills among the next generation of oncologists.3,4 Shared decision making has become an integral part of the doctor patient relationship, helping to recognize and acknowledge the burden of disease, and providing support on the basis of an individual’s needs, values, and aspirations.2

Perhaps in part due to the shock of my diagnosis, those first experiences with my oncology team had left me feeling alone and without support. What I had imagined would unfold in such dire circumstances as a medical student did not become my reality as a patient. Throughout my training, I had witnessed the transformative power of the doctor-patient relationship and its ability to inspire and engender hope, yet I felt no such potential in my own care. Although every patient is different, and entitled to their own care preferences, I found myself seeking a team that would view and treat me as a partner in this unpredictable journey, as a young person with goals and aspirations and not one solely defined by a disease.

Care on the basis of a shared decision-making model has been shown to help patients, especially during the beginning stages of treatment. Through these discussions, patients have reported an increased level of trust in their physician, a lower level of anxiety, and a higher level of satisfaction with their treament.2 Despite these efforts, a recent study found that there can still be a misalignment between what patients and doctors consider most important during their consultations.5 For example, patients reported that discussion of post-treatment quality of life was most critical to them, while clinicians continued to focus heavily on clinical outcomes, and less than half of the patients felt that their personal priorities and future plans had been openly discussed.6 Such studies may reflect the lingering hesitancy among some patients to voice their concerns or to feel empowered to guide discussions. In a recent study in which patients were asked about their discussions with their oncology team, 81% felt they had been properly informed of the short term side effects of treatment, while only half considered the discussion of long-term side effects adequate. Notably, less than half of the patients had discussed their day-to-day priorities with the oncology team, and only a third had discussed their future plans.6 Indeed, patients still perceive conversations concerning quality of life and future planning to be often overlooked or unaddressed, and few report that their preferences are discussed before treatment plans are being finalized.6,7

This was true for me at the time of my own diagnosis. I recall feeling lost and unsure how to speak so that I would be heard. Despite my medical background, I did not know how to voice my hopes and fears as a patient, what questions were appropriate, and what role I should play in guiding my treatment course.

Early in my postsurgical recovery, while I was waiting to begin treatment, I spoke with a close family friend, a brother figure who was a physician. I was candid in discussing my feelings about my care team and ruminating on ways in which I could address this issue. “I think you should get a second opinion.” I stared at my friend, as it had not occurred to me, in my state of turmoil, to consider a further opinion until this moment. He went on to describe a specific doctor who was a leader in the field of thoracic oncology. “I think it’s important that you consider reaching out to her team. They may be able to help you find what you are looking for.”

It was this conversation that drove me to seek out a care team that was more aligned with my own needs, to find a collaborator and doctor who could help guide me as I battled this disease. My new oncologist’s first question was, “When are you applying to residency?” This was the first time a doctor had welcomed into the room my goals and aspirations. I felt like a person rather than a patient and that my cancer was only part of my identity and journey. Our discussions moved fluidly between my treatment options, disease statistics, and my own desires and fears, embodying the shared decision making that I had hoped would imbue our relationship. I can’t help but feel deep gratitude for my friend.

What may have started as a simple conversation changed the trajectory of my care and, perhaps, its ultimate outcome. I had undergone 8 months of targeted therapy with crizotinib when a new set of scans revealed disease progression. Shocked and overwhelmed, I was quickly transitioned to receive a course of systemic chemotherapy. Midway through my chemotherapy course, my oncologist presented me with an unconventional idea. A phase I clinical trial examining a new targeted therapy had opened and she believed this may be my best chance—to stop my chemotherapy and join the trial. As we discussed her recommendation, I realized that making such a decision with poise and confidence was only possible because of the trust we had developed, the time spent discussing my treatment trajectory, and the recognition of my own personal needs and goals. Although unconventional, I abandoned standard-of-care treatment and joined the trial—a decision that remains the reason that I am alive, writing this today.

My story is paradoxical. While becoming a doctor, I also became a patient. What I felt was most important as a patient did not always mirror what I felt as a physician in training. It wasn’t until my intern year that I began to fully appreciate how difficult it was to engage in shared decision making consistently and purposely with my patients. Ms A was a 78-year-old woman with concomitant bacterial pneumonia and bilateral metastatic pleural effusions from breast cancer.

Her cancer had recurred and metastasized to her bones, leaving her in insurmountable pain. In my naivete as a trainee, I began to formulate possible treatment plans and clinical trials that would give her more time, to generate options and treatment algorithms. It was my patient who stopped me, responding to my extensive planning with “No, sweetheart, this isn’t what I want. I’ve lived a wonderful life. I’ve seen my kids grow and I’ve held my grandchildren. I just want you to help my pain so I can be at peace.”

In my haste to give this patient my own version of hope, I had made decisions about her care without aligning myself with her or her goals. It was a humbling moment. Despite my experience as a patient, I had overlooked the unique life experience and goals that this patient brought me. Perhaps in retrospect, my surprise only emphasizes the bias that we can bring to these moments and the effort we need to put forth to engage in shared decision making and to honor our patients’ wishes.

As treatment regimens continue to extend survival, there remains work to be done to promote patient partnership and shared decision making.2,6 Indeed, in minimizing the role that our patients play in their treatment planning, we can inadvertently dismiss the fact that cancer is now interwoven in their life trajectory. When the term was first coined in 1982, shared decision making was born out of the desire to include and promote personal well-being and self-determination among patients.8,9 Over time, the shared decision-making model has been adopted as standard of care throughout medicine, honoring patient autonomy and the growing desire among many to be more involved in their own care. Pilot programs are emerging that prompt oncologists to partner with their patients and to have purposeful, early, and frequent discussions about treatment goals, regardless of stage, prognosis, or treatment phase.4

Numerous studies are now focusing on patient perspectives of shared decision making models and how they may be improved, and we as physicians are willing to listen and grow with this feedback.2,5 I often consider how my own disease course could have been different. If I did not have a trusting relationship and partnership with my oncologist, would I have been willing to join an early-phase clinical trial? This partnership has served as a teaching point for what shared decision making—and the trust it engenders—can achieve. A clinical trial, and the targeted therapy it was testing, saved my life and enables me to sit here and write this story. I currently have no evidence of disease but move through life with uncertainty. I continue to create new milestones as I achieve those before me—remission, another birthday, residency, and applying for fellowships, all within an ever-changing reality.

By embracing my roles as a patient and a doctor, I have been gifted unique insights into the critical nature of shared decision making and what physicians can do to build stronger connections with patients. I intend to use this gift to help every patient I encounter on this unpredictable journey.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one, at: podcasts.asco.org.

I'm your host, Lidia Schapira, Associate Editor, for Art of Oncology, and a Professor of Medicine at Stanford University.

Today, we're joined by Ameish Govindarajan, a post-doctoral research fellow at City of Hope Comprehensive Cancer Center. In this episode, we will be discussing his Art of Oncology article, ‘Chasing Milestones’.

At the time of this recording, our guest has no disclosures.

Ameish, welcome to our podcast and thank you for joining us.

Dr. Ameish Govindarajan: Hi. Happy to be here.

Dr. Lidia Schapira: Let me start by asking you what drove you to tell your story, and then decide to share your story so publicly with an audience of clinical oncologists.

Dr. Ameish Govindarajan: Yes, absolutely. My perspective is very unique, not only as a patient, but as a physician, and I felt that my story highlighted the aspect of oncology that is often not talked about; where there's a bond that is created between the oncologist and the patient, and focusing on the goal to get to the next milestone for the patient and the family members.

Dr. Lidia Schapira: That's beautifully said. And in your essay, you tell us that you have been gifted unique insights into the patient-doctor relationship because you've experienced it but from both sides of the bed.

Can you tell our listeners a little bit about what it was like to be a young student and be told you had this disease, lung cancer, that came as a total shock?

Dr. Ameish Govindarajan: Yeah, I still remember that moment. I think my whole world just crashed down upon me, and I was very fortunate to have my family and also close family friends that were physicians themselves, to kind of help me navigate these uncharted waters.

Dr. Lidia Schapira: And in your essay, what I found so moving is that you said that, what helped you craft this very therapeutic relationship with your oncologist, the second oncologist in this story, is that this person walked in and said, "Hey, what are your plans as a person?" And saw you as a whole person, not just as a body with a disease. How did that feel to you in that moment? Do you remember that?

Dr. Ameish Govindarajan: Yeah. I think it's a moment that's still embedded in my mind, and I often remind myself that that is one of the special moments of my life, in my career, and in my journey as a patient. It was uplifting. I felt heard for the first time, and where I wasn't defined, not by my diagnosis, but I was defined as what I was trying to achieve, and what I was trying to become; which is a physician, and I think that was a really powerful moment with me and my oncologist. That opportunity created and essentially fostered an environment of openness, and I was tremendously grateful for that.

Dr. Lidia Schapira: It sounds like a memorable and beautiful moment. And you talk a little bit about the trust that was established also - your goals were aligned, your oncologist saw you as the person that you are, and you defined these milestones. And then you said that at a critical moment, your oncologist offered you participation in an early-phase clinical trial, and it was because of that trust that you feel that you actually accepted that opportunity or challenge that has worked well for you. Tell us a little bit about that.

Dr. Ameish Govindarajan: I still remember I was receiving systemic chemotherapy at that time, and I remember her bringing up this idea, and she said, "We have this clinical trial, and I really believe that this would be the right answer for us." And I still remember that - where she used "us", and that it was hard to let go of standard of care treatment. But because of our relationship throughout this entire journey, I entrusted her with the unknowing and living in that uncertainty, and I think I often come back to the saying, "Fear and faith don't sit in the same bucket." And I chose faith, and I chose faith in Science. I chose faith in what my oncologist wanted for our journey together, and I think it was a very powerful-- and it's a tremendous moment now sitting back and reflecting on this, that, what a right decision it was.

Dr. Lidia Schapira: Well, you look like the picture of health, right now. So, Ameish, you've chosen to be very open about your cancer diagnosis. And this is something that every person needs to negotiate, how much they want to disclose with their peers, or coworkers, or mentors, even family, and how much they need to keep private.

How did you decide how much information you wanted to share with others, and who do you share it with?

Dr. Ameish Govindarajan: I battle with that every day. Self-disclosure, or disclosing my diagnosis is often not, in generally my encounters, because that's not what I'm there to do. I'm here to hear their story, and understand where their next milestone needs to happen.

But I generally have discussed my stories to my peers to remind that this isn't just an order. It is so much more and completing Internal Medicine when you actually obtain a consult and you're walking down to the emergency room, you have a list of questions and order sets that you're going to place before you pull back the curtain.

And when I tell my story, it's in that idea of, before we pull back that curtain, let's remind ourselves to align to the goal of what that patient needs, which will create and foster a better disposition in the long run, and they'll understand their diagnosis and disease process so much better.

Dr. Lidia Schapira: So, I'm hearing you say, and from your writing, I gather, you are a strong believer in good communication, and communication that is open, and frank, and honest, and supportive. How do you think that your experience as a cancer survivor has impacted on your attitude towards your patients in your role now as a physician?

Dr. Ameish Govindarajan: I think that the most powerful tool that we have is being completely transparent, but at the same time taking the time to really answer their questions. And by sharing space with them, and focusing on not just the clinical outcome, but how they will cope with this new diagnosis that is put on the EMR, and we're about to prescribe medications for, or recommend them to see another specialist. And what our job is, to make sure that we meet their metric, that we actually empower them to be their own advocate, and in order for us to actually have this advocacy being fostered, is us providing all the information that they need to make the right decision, not only to themselves but to their family members as well.

Dr. Lidia Schapira: In your essay, you actually tell a story where you as a physician were entrusted with the care of this older lady who had an advanced cancer, and you were thinking about all of the options for her, and she just stopped you and said something like, "Listen, sweetie, I've lived my life. I just want to be comfortable." And you said that was a bit of an aha moment for you as well, because you understood in that moment, that you were thinking about perhaps what you would want, instead of having listened and internalized to what your patient was saying to you. Tell us a little more about that.

Dr. Ameish Govindarajan: Yeah. I often think about that moment in my training because I was just starting, I was an intern, and I was a really tenacious intern who felt I wanted to make this change happen in real-time for this older patient with metastatic breast cancer with recurrence, and it was a humbling moment for me to really reflect on, that sometimes our goals, even despite what we want, we carry bias. And we hold bias to even our treatment strategies, our treatment plans, and the first thing that we have to do is again ask the patient and align to their goal before we actually make a treatment strategy.

Dr. Lidia Schapira: Let me conclude by asking you a couple of questions about where you are right now in your life, in your medical training. And first, the question I wanted to ask you is, do you consider yourself a cancer survivor?

Dr. Ameish Govindarajan: I do consider myself a cancer survivor in the setting of non-small cell lung cancer, and having metastatic stage four non-small cell lung cancer, you know that it's a diagnosis that you'll carry forever - there's no curative intent in that setting. But for me, I'm empowered every day, and every encounter I see with a patient, that there's hope, not only in the treatments, there's an opportunity in every encounter.

Dr. Lidia Schapira: And are you planning to be an oncologist, or are you already an oncologist? Catch us up on your training.

Dr. Ameish Govindarajan: I'm currently a post-doctoral research fellow at City of Hope, and my plan is, I'm currently applying for Fellowship in Hospice and Palliative Medicine and with the plan to also go into oncology as well, to be at the intersection of supportive care and oncology, focusing on improving quality of life metrics for patients afflicted with cancer.

Dr. Lidia Schapira: That's really inspiring to see how those unique gifts, as you call them, that you were taught from your experience, are now shaping your professional goals. It seems to me that you're in such a great position to really advocate for the patients that you will treat, and to help us understand the science of shared decision-making that is absolutely essential for patients living with this disease that we're all treating, called cancer.

So, thank you so much, Ameish. I just wanted to give you an opportunity to say some final comments or a message for our listeners.

Dr. Ameish Govindarajan: Yeah. Well, I just wanted to say, thank you so much for this opportunity. I'm truly grateful to share my story. And I think that if we remove not only, or we incorporate the idea of aligning to a patient's goal, we will actually obtain better treatment outcomes. That's what I feel.

Dr. Lidia Schapira: Thank you very much. And on that note, let me say thank you to our listeners for listening to JCO's Cancer Stories: The Art of Oncology.

Don't forget to give us a rating or review, wherever you listen. Be sure to subscribe, so you never miss an episode of JCO's Cancer Stories: The Art of Oncology, which is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio

Dr. Ameish Govindarajan is a post-doctoral research fellow at City of Hope Comprehensive Cancer Center.

Listen to ASCO’s Journal of Clinical Oncology essay, “Guilt and Gratitude,” by Dr. Ilana Hellmann, attending physician at Meir Medical Center in Israel. The essay is followed by an interview with Hellmann and host Dr. Lidia Schapira. Hellmann explores the guilt surrounding the toxic consequences of chemotherapy and her gratitude for the patients who continue to connect with their physicians, even after treatment.

The interview starts at 06:15

TRANSCRIPT

Narrator: Guilt and Gratitude, by Ilana Hellmann, MBBCh (10.1200/JCO.22.02000)

It was the end of a long day in clinic. There was a knock on the door to my office and my assistant’s head appeared: “Avi called and asked for an appointment.” The look on her face mirrored the thought that immediately went through my mind: That cannot be good. I asked her to fit him in to one of my clinics in the next few days.

I had first met Avi about 5 years previously. He was then a 29-year-old computer programmer and recently married to Talia, an artist. He was tall, skinny and stressed. She was short, stout and happy, an eternal optimist. They had no children. He had had an irritating cough, then developed night sweats and by the time he was diagnosed, he had advanced stage Hodgkin lymphoma: stage IVB with all the poor prognostic factors on the list.

He needed treatment quickly. We planned to give him the escalated bleomycin, etoposide, doxorubicin, cyclophosphamide, vincristine, procarbazine, and prednisone protocol-nasty stuff, with lots of side effects, but with good results. I explained it all to Avi and Talia. Aside from all the usual suspects: hair loss, nausea, pulmonary and cardiac toxicity, bone marrow suppression, and secondary malignancies, there are high rates of infertility, especially in males. We sent Avi to collect sperm samples before starting treatment, and despite numerous valiant efforts, his samples were all of poor quality. There was nothing there that could be used in the future.

His treatment course was not easy. The side effects were, from my point of view, mild. He had no life-threatening infections and no admissions because of side effects. But for Avi, it was awful. He described feeling like being run over by a truck. He stopped working, and things were strained between Avi and Talia. She found it very difficult to deal with his constantly long face, and he could not stand her persistent optimism. At one point, I remember a conversation close to the end of his treatment. I said something about how we were nearly there, to which he replied, “I started this treatment when I was young and now I am old.”

He finished his chemotherapy and thankfully went into complete remission. I breathed a sigh of relief and smiled at Talia, both she and I thinking that now Avi would recover. Months went by and physically, Avi recovered. He went back to work and started exercising again. Then as the months turned into a year and then another year, testing revealed what was initially feared. Avi was infertile. The conversations in my office between Avi and Talia were tense and painful. Talia wanted to use a sperm donor. She wanted a child of her own and the experience of pregnancy and birth. Avi felt that he could not be father to a child that was biologically hers but not his. He wanted to adopt. Neither one of them was prepared to compromise and despite the interventions of a wonderful psychologist and then also a marriage counselor, it was a downward spiral. Then, Avi missed a follow-up appointment and stopped coming all together.

It had been a good 2 years since I had last seen Avi when the assistant knocked on my door. The next morning I saw Avi in the waiting room. The woman next to him was not Talia but his mother. I concluded the obvious: divorce. The thought that now he was in relapse (why else would he need an appointment with me?) and would have to go through salvage therapy without her was paralyzing.

I called him in to my office. He looked great! He greeted me with a big smile and a hug. We went through his medical history. I examined him and looked at his laboratory results. Everything looked perfect. Avi was relaxed and chatty, asking me about my work and my kids. I was going quietly crazy waiting for the punchline. I took a deep breath and asked him: “How’s Talia?”

He smiled and pulled out his cellphone. He showed me picture after picture of a beautiful 3 month old baby girl. “This is Lia,” he said. “I thought you deserved to know.” The tears sprang to my eyes. “How?” I asked. He explained that he had eventually acquiesced to Talia’s pleas. She became pregnant with sperm from a donor. He said that the pregnancy for him was nothing short of terrifying, but that as soon as Lia was born, it was obvious to him that she was his.

I was overwhelmed with emotion. I realized that I had been suppressing a tremendous feeling of guilt around what had happened to Avi (and Talia). The feeling of guilt was not foreign to me. I had experienced guilt around the death of a patient or around mistakes, real or perceived, that I had made. Avi, however, was cured of his disease, and I had done nothing wrong. This was an altogether different kind of guilt: one less spoken of and less obvious. The knowledge that we as physicians are able to cure patients from cancer is humbling. The fact that we cure them but leave them with life-long and life-changing side effects is devastating.

I do not know how much Avi understood what he had done for me by coming in that day. During that visit, he was treating me and not the other way round, and the healing effect was enormous. I possibly overdid it in my reaction to Avi in my office that day. But as he got up to leave and I thanked him for taking the time to share his news, I think he knew.

In the years since, I have learned to ask patients to call me when they are unwell, but to please remember to also call or text me when they are feeling better. There are many who have taken this very seriously, and those messages are often a tremendous source of inspiration and reassurance, especially on difficult days.

To Avi and to all my other patients who take the time to call to say they are feeling better or to share some piece of good news, who are able to see the person in their physician, and understand my need, I thank you.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content and offers enriching insight into the world of cancer care. You'll find all ASCO shows, including this one, at: podcasts.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University.

Today, we're joined by Dr. Ilana Hellmann, Attending Physician in the Hematology Department at Meir Medical Center, affiliated to the Tel Aviv University Medical School, in Israel. In this episode, we will be discussing her Art of Oncology article, 'Guilt and Gratitude'.

At the time of this recording, our guest has no disclosures.

Ilana, welcome to our podcast and thank you for joining us.

Dr. Ilana Hellmann: Thank you for inviting me, I'm delighted to be here.

Dr. Lidia Schapira: It is our pleasure. Ilana, I'd love to start the show by asking you if you can recommend to our listeners any recent story or book that has moved or inspired you.

Dr. Ilana Hellmann: So, I read to escape, I don't read medical books, I don't watch medical programs. And I heard someone recently recommend, on one of your podcasts, a book by Anthony Doerr, called, All the Light We Cannot See, which I absolutely love - it's one of the most beautiful books I've read in the last two or three years. And I've just finished his next book which took him years to finish, it's a 600-page beautiful book called, Cloud Cuckoo Land, it has an interesting name. Have you read it?

Dr. Lidia Schapira: I have not read that one.

Dr. Ilana Hellmann: It's a wonderful book, and if you read the last one, it's no less inspiring with lots of different characters over different time periods, and they're all connected to each other by a story, by a fairytale, and it's a beautiful book. I enjoyed it tremendously.

Dr. Lidia Schapira: Oh, thank you for that. I have a book for my next trip now.

Dr. Ilana Hellmann: Wonderful.

Dr. Lidia Schapira: Let's talk a little bit about writing in Medicine, and writing, as a way of sharing our stories with our colleagues and our trainees. What was the motivation for you to write this piece? It seemed to me, when I first read it, that it took years to put it together. But what was the driver for sending it out to the world?

Dr. Ilana Hellmann: It's quite a strange story. In fact, what happened, happened a large number of years ago - the baby is 10 today. I wrote it just after she was born. It was a long, long time ago, when I saw the patient and I was overwhelmed by what happened, and I sat down and wrote something and put it in a folder on my computer, and forgot about it. What then happened, as you say, that it took years and years to finish, is that I got a call from the computer tech people in the hospital who said, "We're coming to give you a new computer, and if you don't clean up all these things on your desktop, they're going to get lost." And I found this folder that I'd forgotten about completely, and I read it and wasn't finished. You know, I hadn’t thought about it in all those years. The end part about what it had done to me over the years, and the things that have changed in my practice because of what happened came later.

I think we, as doctors, not just oncologists, doctors in general - we see bunches of people during the day, and one goes out, the next one comes in, and another goes out. You know, you don't have time during the day to process what you're feeling, and you just have to get past it and go to the next patient. I find that occasionally, at the end of the day, I think, "Wow, I have to write this down." And the truth is that I've just about never shared anything of the things I've written. I work a lot with students, and we encourage students to write narratives, reflective diaries; you know, I thought, "Wow, it's kind of hypocritical of me to tell them what a wonderful thing it is to do and not share something like this with somebody else." And that's how it happened that I shared this particular piece.

Dr. Lidia Schapira: So, before we go into what I think is the essence of the piece, tell us a little bit about what it's been like for you to share your writing with your students now. Have they had a chance to comment and react to this piece?

Dr. Ilana Hellmann: My students haven't seen it yet. My colleagues, our residents, have all seen it, and it's been quite amazing. It's a side of us that we speak of less. There are things that are left behind closed doors, and it's been wonderful. I think people who've read it have then come to me privately and said, "Wow, that's an amazing story, and I'm so glad you shared it with me. And that's an amazing outlook, what you thought about it." So, it's been quite something. My students have been on holiday the last two months, we're just starting again with all of them, and I'll share it with them once it's published.

Dr. Lidia Schapira: I think they'll appreciate it. But let's talk a little bit about this, and you just said there's so much that happens when we close the door. I don't want to trivialize the message in your essay and say that it's just about self-care, because I think it's about much more than that. So, let's talk a little bit about what it felt like to you to be on the receiving end of this gratitude. Patients often express that they are so grateful for what we've given them through our treatment, and, you know, an extension in life, or an improvement in symptoms, but it's rarer for us to really have and feel that compassion emanating from a patient, and it feels so good. Take us there. Tell us a little bit about what it felt like.

Dr. Ilana Hellmann: Absolutely. I completely agree with your sentiment. As I wrote, I had no idea what was going to happen when he walks through the door. I expected something completely different. When he pulled out his cell phone and there were these pictures, it was just overwhelming. I couldn't stop the emotion; it was just amazing. And I knew that he'd come for me, literally. He'd come to say to me, "It's okay, I'm fine. I've gotten on with life, everything is good." I hadn't seen him in two years. He then disappeared, and I didn't see him again until he needed a letter for something, or other.

And I've actually seen him again, I saw him two weeks ago because of this essay. And after that happened, I thought, "Wow." As you say, it's not just self-care, it's way deeper than that. And in a way, we are trained to look after our patients. The patient is the one with the disease. We need to think about what the patient is feeling, we need to make sure they don't have too many side effects and long-term stick to what we give them. And we are not trained to look after ourselves, or certainly, to ask our patients to consider what we feel, or whether what they're going through has any effect on us. But as I wrote, in the years since, I had a patient recently with lymphoma, and she was very, very unwell in the beginning, a young lady, she dreamed about going for a walk on the beach. And over the first few months that she was treated, she was very unwell and she could barely walk, and I said to her, you know, she kept saying to me, "I'm going to get to that beach. I'm going to get to that beach." And I said to her, "You know, when you get to that beach, it would be so wonderful if you could let me know." And when she got to the beach, she sent me a WhatsApp-- all she sent me was a picture of the waves rolling onto the beach. As you say, I was so grateful for her sharing that with me.

And I think, and maybe this is the bottom line, that exposing that side of us to our patients makes us more human. You know, we're not just the people who hold their hand and give them their chemotherapy, and hopefully, help them get past whatever it is that they're ill with, but we are people. People like it. When I give patients my email or my phone number, I say to them, "You know, when you are not well, or whatever you need, let me know. But if you're feeling better, I'd love to hear that too." And I've never, ever had anybody dislike that. Most of them say, "That's wonderful. Absolutely, I'll let you know." And then, as I wrote, they take it very, very seriously, and it's such a wonderful thing. You know, in amongst the 20 emails of, "I've got terrible nausea, and I'm constipated, and another lump has appeared in my neck, I need a letter for some insurance," and so on, and so on, then to, "I just wanted to let you know that I'm really doing okay." Or, "Whatever you gave me, it feels better." And again, really, I think it just gives the patients a bit of a look into the human side of their physician.

Dr. Lidia Schapira: And it definitely feels so healing I think for us. I was struck by your account when you talked about the fact that people walk in and out of your office, and you're constantly prepared for emergencies. Basically, our clinical time is often responding to all of the challenges and the problems that patients bring to us, because we deal with people who are so ill and it's very stressful, so, it almost seemed to me that you were surprised when what happened in that encounter was just meant to be a gift to you - an expression of gratitude, and that seems to have had a huge emotional impact. And as you were talking, I wondered, do you and your colleagues share these stories? The stories, the photos of your patient getting to the beach, and the messages of gratitude that often come months or years later?

Dr. Ilana Hellmann: We do, we do. You know, as the years have gone by, technology has changed. There used to be that board in the doctor's room, where a patient would have written a letter, and would get pinned on the board - those days have gone. Today, patients, some of them write letters, and then people take a photograph, and we have a WhatsApp group, or an email-- I'm sure there was one like that, yesterday, from one of my other colleagues, who got a beautiful letter from a patient. Absolutely, absolutely. In the same way that when there's bad news about a patient that everybody knows, it's shared, when there are good things about when patients thank us, or if they're just better, you remember there was so and so who was really doing unwell. Well, you know, things are looking better. Definitely, definitely, we share, for sure.

Dr. Lidia Schapira: So, how do you think this experience affected or changed your practice and how you treat in future patients?

Dr. Ilana Hellmann: When I called Avi, the patient in the essay, and I hadn't spoken to him for many years-- he disappeared from follow-up, and it happens - young patient, he had better things to do than come and see his hematologist. When I called him, immediately, he recognized my voice when I said, "Hello", and he was very happy to hear from me. And when he heard why, and I sent him the piece, he was overwhelmed with the effect that it had on me. Immediately, we made a date, and he came in for an appointment, and we chatted about it.

He had a lot to say about the essay. He was very, very stunned, in fact, by the accuracy, from his point of view, of how I had described him and his wife, and what they'd gone through, and what had happened, and he wanted to know if things have improved. You know, back when he was ill, it wasn't so easy to find a psychologist for him. It wasn't something that was-- now, we have two psychologists who work with us, and things are a lot better. But his biggest question to me was, he said, "You know, I never thought about your side. It never occurred to me that what was happening to me was affecting you." He said, "You know, are you counseled? Does somebody look after you?" That's a difficult question. It's not such a comfortable question. I don't what you would answer to that one. But certainly, not officially.

There's definitely no special time to work through-- you know, things come up when we have meetings, but it's not as if I have sessions to say, "Oh, I had a bad day, and this is what happened, and so and so, and whatever," but I share more with my patients. They're sad, I say, "Yes. It makes me sad too." I used to think maybe it made me weaker, or it was unfair to the patient to show them my emotion, and I've learned that I think it's absolutely fine, to a certain limit, to show them that I'm human, and I'm with them, and that's okay. And as I say, I'd ask them specifically to share good things with me, and not just bad things. And it's something that I tell my residents and students, I say, "Even people who are unwell have good moments, and we need to encourage them, and also enjoy them ourselves."

Dr. Lidia Schapira: I think we could talk for hours, and I sincerely hope that the listeners will talk with their colleagues - so, with somebody else about these same issues. I think it's a fabulous conversation. I'm not trying to evade answering your question of what I would've said, or what I would say; I had an almost transformative moment many years ago when I was a young oncologist, and a patient who was incredibly kind and tuned into me, who had metastatic cancer, saw my expression when I walked in the exam room, and she said, "You're having a bad day." And just that moment of empathic connection, when she recognized that I was under stress, I clearly showed it, was enormous for me. And I felt such deep compassion from her and was able to then turn this into a self-compassion moment, and then I sort of reset myself, and we had a good visit. But since then, I've been much more aware of the fact that our patients do also pick up some of these feelings. And when there's a good connection, their presence can be, and feel, very healing for us as well.

And the answer to the question of, "Do we have psychologists? Do we need therapists?" I think is one that we as a collective group, or as a tribe, should often ask ourselves. What do we need? How do we vent? How do we unload? How do we share, and how do we get that social support that we need to do this difficult, stressful work, in the same way that we think about the mental health and well-being of our patients, as you so beautifully pointed out?

So, I thank you very much. I think that as the Editor, and the readers who first looked at your essay, we were very moved by this sentiment that you have about the deep connection we feel, and how much we wish our patients well, and how grateful we are when they tell us that they are well.

So, I wanted to give you an opportunity to finish the podcast with a thought or reflection.

Dr. Ilana Hellmann: I think we don't reflect enough. Today, we teach students to think reflectively - "I saw something, it meant something to me. What does it do with me?" But it's not something I was taught, or it's certainly not the regular kind of discussion that happens, and that I think writing things down is so therapeutic - you think about something, you write it down, you read it again, you come back to it, as this happened to me, years later. It's a beautiful process. I would recommend to people to just try - when something happens, to just sit down with a piece of paper-- well, nobody sits with a piece of paper, in front of a computer and write it down.

Dr. Lidia Schapira: Even if we don't have an IT person coming to give us an ultimatum, they're going to clear everything on our desktop by tomorrow.

Dr. Ilana Hellmann: Right. Absolutely.

Dr. Lidia Schapira: Until next time, thank you for listening to JCO's Cancer Stories. And thank you, Ilana, for a wonderful show today.

Dr. Ilana Hellmann: Thank you.

Dr. Lidia Schapira: Don't forget to give us a rating or review wherever you listen. Be sure to subscribe, so you never miss an episode.

JCO's Cancer Stories: The Art of Oncology, is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org.

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Show Notes

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Guest Bio

Dr. Ilana Hellmann is an Attending Physician in the Hematology Department at Meir Medical Center, affiliated to the Tel Aviv University Medical School, in Israel.

Listen to ASCO's Journal of Clinical Oncology essay, "People Like Us," by Dr. Stephanie Graff. The essay is followed by an interview with Graff and host Dr. Lidia Schapira. Graff reflects on her life experience as a female physician, farmer’s daughter, mother, and pie connoisseur to connect and help her patients get through a life-altering diagnosis.

TRANSCRIPT

Narrator: People Like Us, by Stephanie Graff, MD (10.1200/JCO.22.01835)

I was standing in the dining room on the 15-year-old burnt sienna carpet, so heinous that it could have only been chosen because it was on sale. I remember the afternoon light from the western windows falling across the oak dining table which matched my mother’s brusque, wooden tone. She remembers nothing. She does not remember saying the words that I have so

often replayed, pondered. I was stung by the interaction in a way that rendered me speechless, in a way I now recognize too often in my approach to conflict in adulthood: silence assumed to represent understanding, consent, or complicity.

Weeks earlier, this same woman drove all over our small town hoping to catch the mailman before driving to my track and field meet 30 miles away. I was waiting for word from the University of Missouri-Kansas City (UMKC) School of Medicine, and I think my mom was

as anxious to hear as I was. Conveniently, her brother (my uncle) was our mailman. When she arrived at the track meet, she handed me the large envelope proudly bearing the school’s logo in the return address. I tore it open sitting with my boyfriend on the bleachers, seeing my prayers answered in black and white before my eyes. There is a photograph of this moment, so I can describe perfectly what I am wearing: my royal blue and white track uniform, my sprinters spikes and—I am sorry to tell you—a neon green hair scrunchy. This photograph also proves, in that instant, my mother understood that what was unfolding was a milestone moment in my life. I remember asking her later when I discovered she tracked the mailman around town to get the mail what she would have done if I had not been accepted. She replied that she knew I had gotten in from the size of the envelope, so she never had to think about it. I like to imagine my mom also had faith in me that led to the wild goose chase for the mailman, even before she saw the envelope.

Within the envelope, in addition to the acceptance letter and glossy brochure telling me all about my wonderful new life as a UMKC medical student, was a parental consent form. The 6-year combined BA/MD program at UMKC was far from inexpensive, and, as a minor, I would need my parents to sign this letter stating that they agreed that we would pay the tuition. Of course, by we what was really meant was I would be taking out student loans to cover every single cent of tuition, room, and board. But the letter, with a DUE BY date ticking ever closer, had been sitting on our dining room table since the day the acceptance arrived, unsigned. My father signed things like this. Never my mother. My mother would not even broach the subject with him. Nice families in rural Missouri just do not talk about money or politics. So, there it sat, a white paper elephant in the room.

“Mom, when is dad going to sign my acceptance letter? The deadline is soon, and we still have to mail it back,” I pleaded with her that afternoon. She turned to look at me, en route from the dining room to the kitchen and said, “Stephanie, people like us don’t go to medical school.”

People like us? Who is this us? Women? Mid-Missouri farmers? People from small towns? Our family specifically? Poor people? I may forever regret not asking. I may forever regret that moment of stunned silence where I only wondered if she had just said no to my dream and considered my next move very carefully so as to not make it worse or potentially close a door forever. By the time I asked her, years later, what she meant in that moment, my mother had no memory of saying it to me. This innocuous phrase, “people like us” that haunted me for most of medical school.

Eventually, of course, my father signed it. Only a day or two before the deadline as my memory recalls. He sat me down and told me it was a lot of money and asked me if I was serious about this whole doctor thing. I assured him that the one and only thing I had ever wanted to be had not changed in 10 years, after a short-lived dream of being a country western singer and that it was unlikely to change now. Then, he had signed the consent, which I had taken immediately to

the post office before anyone could change their mind.

Yet, those words kept bubbling up. When I struggled with a test or subject, I wondered if people like us always had a hard time with organic chemistry or neuroanatomy. When my classmates talked about their exotic travels to tropical getaways or international hotspots, I sheepishly admitted people like us do not travel much. When patients assumed the female medical student was a nursing student rather than a medical student, I assumed that was just what happens to people like us. When I mispronounced something or exposed my total ignorance into the

broader process of step examinations, residency, the road to physicianhood, I figured it was just the sort of thing people like us cannot help.

Then one day, a patient newly diagnosed with melanoma shared with me that he was worried about how treatment would interfere with farming. “Well, what kind of farming are we talking about?” I probed. He raised cattle, had some corn and hay fields. “Oh really? What breed? How many head?” We fell into the easy talk of farm life, and he shared his current toils of repairing his tractor. When he left, his wife pulled me aside and confided, “It really is nice to know that his doctor is one of them.” When I start to write a prescription, I often stop to think about the cost, about how $20 US dollars is a big deal to people like us, and I talk to patients about what is financially possible, what help they need, what resources we have. One of my breast cancer survivors always framed her chronic lymphedema symptoms in terms of how much or how little it held her back from baking pies. We shared recipes of her grand champion state fair pies and my mom’s own grand champion pecan pie. I could understand the flurry of activity and pressure to bring your freshest, most beautiful pies to the fair because I shared that lived experience. Patients like this, one by one, started me thinking that maybe more people like us should be in medical school. I know the statistics for my own field of medical oncology, and few oncologists practice in rural areas, despite the community needs. I have no statistics for how many of my colleagues grew up farming or preparing for state fairs every summer. But, I have answered phone calls from my mom, asking advice about what aspects of farming are safe when you are neutropenic or how best to plan Moh’s surgery around harvest. People like us are necessary to fill those gaps.

As a woman in medicine, numerous women have reached out to me to ask me questions about the duality of medicine and mothering or the intersection of work and sex. My emails, text messages, and social media feeds are filled with threads on breastfeeding at work, daycare solutions, unique challenges in leadership for women, and advice on career growth. These conversations ring with the chorus of someone like me as we connect over similarities. My mom

recognizes this version of like me as well, handing out my phone number to women in the intervening years from my hometown applying to my alma mater or medicine in general. If community and connection with other women improves career experience for women in oncology, I am glad there are people like us.

And as much as I see a need in medicine for people like me, I also see all the ways I represent privilege—which of course means that there is ample space in medicine for people not like me. If the numbers of rural or female oncologists are low, the numbers of Hispanic/Latino, Black/ African American oncologists are startling. How can we collectively provide culturally and linguistically competent care if our workforce does not share the same diversity as our patients?

So, mom, 25 years later, I think we have both grown to understand medical schools need people like us, people like all of us. I think you have felt that as much as I have over the years in your own connections with doctors caring for members of our family or in the health questions you save for me. When I sit with a patient as their doctor, I am also there as a woman, farmer’s daughter, mother, writer, baker of pies, and so much more. Each time one of these versions of me creates connection with a patient or colleague, my care improves. Each of our unique gifts and experiences help us connect with our patients in ways both big and small. Medicine needs people like us.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one at: podcasts.asco.org.

I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University. Today, we are joined by Dr. Stephanie Graff, Director of Breast Oncology at Lifespan Cancer Institute, and Assistant Professor of Medicine at Legorreta Cancer Center, at Brown University. In this episode, we will be discussing her Art of Oncology article, 'People Like Us.'

Our guest's disclosures will be linked in the transcript.

Stephanie, welcome to our podcast and thank you for joining us.

Dr. Stephanie Graff: Thanks so much for having me.

Dr. Lidia Schapira: It is our pleasure. So, I like to start the show by asking our authors what they are currently reading and would recommend to listeners.

Dr. Stephanie Graff: I am currently reading The Power Broker, which is kind of a funny book to be reading. It's obviously an older book, and it's the story of Robert Moses who famously, or infamously, perhaps, built New York City, and sort of wrote the power structure of city government or state government and politics in New York, and it's written by Caro and is a Pulitzer Prize winner, and I just have never read it. It's quite the tome, so it's hard to power through, but it's excellently well-written, and really insightful into political culture and the history of New York. So, I'm finally working my way through it. I'm not sure that I would recommend it for the average reader. I just finished The Sentence, by Louise Erdrich, and, Unlikely Animals, by Hartnett, and both were delightful reads.

Dr. Lidia Schapira: You are a gifted storyteller. I wonder if you could tell our listeners and share with us a little bit about your process and when you write, how you write, and what inspires you to write.

Dr. Stephanie Graff: When I write and how I write, I think the answer is, all the time. You and I may have talked about this before. I feel like writing is often how I decompress, and I find that I'm often writing in my head all the time. So, when I'm walking my dog, when I'm driving my car, when I have downtime, I'm sometimes turning over ideas or events and looking for the thread or the storyline there. I write poetry, actually mostly for myself as my form of journaling, or meditation, or rage, or sadness, whatever it is I might be feeling. And sometimes that then turns into something narrative, and that's a habit that I've had for a very long time, even as early as middle school and high school, it was a habit that I've always had.

In terms of then turning that into something narrative or publishable, I think that that's more of an ‘aha’ moment where an idea that I've been turning over for a while finally feels like there's a unifying theme, or thread, or a particular patient encounter, or a funny thing that one of my children said inspires it to become this sort of 360 moment that makes it feel more like thematic story that can be told.

Dr. Lidia Schapira: So, given your expertise with stories, and your appreciation of literature, and the fact that you've now lived in the world of Oncology for quite a while, what is your opinion of the role of stories and narratives in our culture and our approach to training others, and sort of sustaining that sense of vocation I think that drove us all to choose a specialty in the first place.

Dr. Stephanie Graff: Yeah. I think that story is so important for how we relate to one another, and how we relate to our patients because I think that, you know, if we're just talking to patients about a phase III randomized clinical trial and throwing at a patient a bunch of statistics, or metrics, or guidelines, it's not digestible, or understandable, or relatable. And so, being able to talk about what we do at the story is what makes that understandable, memorable, digestible for patients, but also for our colleagues, and our students, and residents, and fellows, staff, everyone that we interact with in our day-to-day experience. And so, I think that really thinking about The Art of Oncology, the practice of what we do day-to-day as parables, and stories, and looking for ways to turn that science, that data into little anecdotes is really so central to understanding.

Dr. Lidia Schapira: Let's talk about the story that you so beautifully wrote, ‘People Like Us’. Thank you for sharing that and sending it out to the world. I assume this is something that you've been thinking about for decades, and I, since you don't look like a teenager waiting for mom and dad's approval to go to med school.

You know a good story, Stephanie, I'm sure you agree, allows the reader to project into, and imagine things. And there were two big themes for me, and one of them had to do with the mother-daughter relationship. So, can you talk a little bit and share with us a little bit about that aspect of the story of the words that your mother said at a very tender age that sort of stuck with you and kept on giving?

Dr. Stephanie Graff: So, for those listening, the story is that my mom said to me after I had been accepted to medical school and was kind of waiting for my parents to sign the acceptance letter, I went to the University of Missouri, Kansas City six-year program, so I got accepted to medical school, straight out of high school. And because I was 17, they had to sign this parental consent in order for me to actually start. And so, this letter was like sitting like the elephant in the room on my dining room table for, I don't know, two weeks or something, waiting for them to sign it. And my mom one day, in a moment, that to her was, I mean, she doesn't remember it.

So, like to her clearly, it was like this nothing-passing comment, like, you know, "Pick up your shoes." She said “People like us don't go to medical school.”

And at the time, I was so struck by it, but I have no idea who this "us" was that she was referencing. And I have spent decades wondering, in retrospect, "Oh, why didn't I ask questions?" You know, my mom actually was this amazing hero to me in my childhood. You know, she was a Girl Scout leader, and I got my Girl Scout Gold Award, she created all these opportunities for leadership and engagement in my community. She taught Sunday school. She graduated high school but just has a high school degree. She never went to college herself, because she was actually told by her parents that girls don't go to college, that girls get married and stay home.

And so, though she wanted to go to college, her parents closed that door for her, and so she worked a factory job to earn extra money to help support the things that my siblings and I all wanted to do that, you know, kids' activities get pricey. Eventually, the factory job was physically demanding on her as she aged, and she ended up applying to become a paraprofessional in the schools, and so spent the second half of my childhood working as a para in our schools, which actually also ended up being a very physically demanding job. But really all kind of just out of determination and passion to create opportunities for us as children. So, in no way is this story meant to be a shot at my mom. She's been a really, really great mom. And again, she has no memory of saying this thing to me that has stuck with me so harshly, perhaps over the last several decades. But she said it, and at the time I was kind of like, "What does she mean by this?" I mean, obviously, I already had a lot of doubt about whether or not medical school was going to be right for me or if I was gonna fit in there, and for her to say that, I was kind of like, "Oh gosh, maybe people like me don't go to medical school."

And then as I entered medical school, medical school was hard. It was hard as an 18-year-old. I struggled in classes, there were lots of moments where my peers were just more worldly than me. They had traveled, they came from backgrounds where most of their parents-- I had so many classmates whose parents were both physicians, and so they didn't struggle with the language of Medicine, the career paths of Medicine in the same way that I did. You know, my mom's words just kept coming back - people like us don't go to medical school. It was something that just sort of kept coming up over my career.

Dr. Lidia Schapira: So, who are those "People Like Us"? Have you figured it out? I certainly enjoyed reading all of the possible spins of People Like Us - people who come from farm backgrounds, people who aren't rich and worldly, perhaps women. Who are these "People Like Us?"

Dr. Stephanie Graff: Well, at the end of the day, I think all of us are People Like Us because you know, if anything I've learned in my last 20 years of this, is that everybody has those feelings of self-doubt, and feelings like, "we don't fit in." And hopefully, those are coupled with moments of feeling like you do belong, and hopefully, everybody has a network of belonging. But we're all periodically thrust into times where we don't feel like we fit in, and we don't feel like we belong. And there's so much that can be drawn from those moments.

So, whether it's that you are from an underrepresented group, from your ethnic or cultural background, your socioeconomic background, your gender, your sexual identity, you know, no matter what that is, your parents' occupation, if you're the first person in your family to go to college, you are going to bring the tapestry to Medicine that helps us kind of richly relate to our patients in a way that's so cool.

One of my favorite studies that I've seen in the scientific literature is actually not an Oncology study, it's a Cardiology study that looked at patients presenting to emergency departments with heart attacks, and it was a gender inclusion study. And what it looked at is in patients that have heart attacks in the emergency department, if the cardiologist caring for the patient is matched gender, like a man caring for a male heart attack patient, they have a better outcome. But if that cardiologist has a partner that is of the same gender, so like if the male cardiologist has female partners, their care of female heart attack patients improves, and that patient's cardiac mortality improves, which was so fascinating that like just having a greater exposure to female cardiologists helped male cardiologists provide better care to female patients.

So, I do think that just gathering experiences of the people not like me, that surround me all day, help me relate better to my patients. There's certainly so many cultural celebrations, travel experiences, world celebrations, that I better understand through my classmates, peers, colleagues, friends, that I have encountered in Medicine, that help me connect and relate to my patients in ways that I previously didn't have access to. And there's ways that I'm sure me as a Midwestern farmer's daughter have helped my colleagues understand some of the things that our patients cope with.

Dr. Lidia Schapira: You make a brilliant case for diversity, and of course, for inclusion, which is something that everybody is really keenly trying to think more deeply about these days.

And that brings me to another question or follow-up, and that is the role of empathy in communicating with people who are not like you. One of the most beautiful parts of your essay, I thought, was when you take us into the exam room with a patient, and you're actually giving us some examples of how your lived experiences as a farmer's daughter allowed you to connect with people who work the land, or who depend on the land or women who bake pies. Tell us a little bit about that - the role of the connection with a patient, and empathy, and compassion in helping us create a more welcoming environment, both for our colleagues and for our patients.

Dr. Stephanie Graff: I think everybody has had that experience before where a patient asks us, as their Oncologist, if while they're undergoing chemotherapy, undergoing radiation, if they're still going to be able to like [insert their passion here]. You know, as I reflect over my lifetime of patients, I've had patients who are professional poker players. I had a professional accordion player. I've had figure skaters. I've had everything, right? And I don't know the first thing about professional poker, okay, I would be a terrible professional poker player.

But I could imagine what skills are needed to be a professional poker player and answer that question. But every once in a while, a patient asks me if they're still going to be able to do X, and whatever they fill in that blank is something that so deeply relates to my childhood experiences, that it becomes this bonding moment with my patient. So, some of the ones that I shared in the essay is a patient who spent every summer baking pies for the State Fair.

For those of you who don't know, at the State Fair, you can enter your pies, cookies, baked goods, canned goods, decorated cakes, pretty much anything you can imagine, breads, and they're judged, and the winner gets ribbons - red, white and blue, and grand champion, and reserve grand champion that come with cash prizes, it's bragging rights. If you happen to also own like a bakery, or decorate wedding cakes, for example, that's something that's then marketing material, advertising material for your company that you're the Missouri Grand Champion of wedding cake decorating for 2022, or whatever it might be. So, this is a big deal, and people in my community talked about it and joked about it. And you would, at the church picnic when you're picking which pie, you know whose pie was the grand champion pie.

So, she told me going into her chemotherapy, that it was really important to her that she could do the pies. We laughed, because my mom is the grand champion pecan pie baker for our county, and my mom makes a, pardon me, damn good pecan pie, I would say.  So, that patient and I spent a lot of time talking about how her pie baking was going. And I will say that the summer that she was on chemotherapy, she said that it was really fatiguing and hard for her. And so, that next year when it came time to pie season, she was really excited to tell me that like she entered two more pies than she had the prior year because she had that extra energy to like get up on the morning of the fair, and bake the extra pies, and spending all the extra time on making the crust beautiful. And I know what that's like because I've seen my mom get up at four o'clock in the morning to make a beautiful, perfect pie, and have it ready to enter at 8:00 AM when the fairgrounds open. That's so unique to perhaps rural Missouri, or the Midwest, or fair culture, and I guess probably not a lot of Medical Oncologists know what that's like.

I had another patient who was, when I was still early in my career and was caring for things other than just breast cancer, who had a melanoma, and his wife asked me a lot of questions about how it was going to impact his farming. And we had this really lovely conversation about what kind of farming, and how many acres he had, and how many head of cattle, and what crops, and they were shocked at the depth of my knowledge about farming, and my ability to answer their questions in detail about what would be safe, and what would not be safe. And when they found out that it's because that's what I was raised doing, and that's what I did when I went home on weekends to visit my family, it was help out on the farm and do many of the same things that we were talking about. They saw me in this completely different light. Then they had seen me as this high-heeled wearing, white coat dawning Medical Oncologist, and it, I think helped them feel so much more comfortable in their cancer treatment, knowing that I understood where they were coming from.

Dr. Lidia Schapira: I have to ask you this question. Have you shared the essay with your mom?

Dr. Stephanie Graff: I have not shared it with her yet. I will when it comes out in print.

Dr. Lidia Schapira: What do you think her reaction will be?

Dr. Stephanie Graff: I think that she'll think it's lovely. We've had this conversation about how annoyed I am that she doesn't remember saying it, and how -- I guess it's weird because, you know, she said it and at times in my life I would say that it was hurtful that she said that people like us don't go to medical school, and that probably is the right language at different time points. I don't know that today I would describe it as a hurtful comment because I know what it was. It was just words that came out of her mouth whilst she was busy doing 100 other things, right? She doesn't remember it for a reason, which is that it wasn't a big commentary on me, or my life, or my choices. It was just words coming out of her mouth as she was going from one thing to another. So, I don't think that she'll find any hurt, or ill will in it at all.

Dr. Lidia Schapira: She may respond with a comment about what it's going to be like for you when you're in that situation with perhaps your children, and perhaps, at that point, make a comment that to you, may be forgettable, but makes a deep impression and a lasting impression in their young minds.

Dr. Stephanie Graff: That's actually something that I've spent a lot of time thinking about, both as I reflect on the comment, and, you know, at the very beginning of this, we talked about when I'm writing, and I said, always. I think about that comment a lot in the context of so much that I do - in my own parenting with my children, things that I say to them, and how those words might impact them. Things my husband says to them, and how those comments might affect them. But also, in the larger work of DEI, and how "jokes", or jabs, or sarcasm, things that aren't necessarily meant as true, can cut wrong. And that's why we have to be thoughtful, and careful because you never know who is listening, and how words are going to hit somebody on any given day.

Dr. Lidia Schapira: On that beautiful note, I want to thank you for sending us your work. Please continue to write, and I look forward to reading future stories, maybe even a poem, sometime.

Until next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating, or review wherever you listen. Be sure to subscribe so you never miss an episode.

JCO’s Cancer Stories: The Art of Oncology, is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review.

Bio:

Dr. Stephanie Graff is the Director of Breast Oncology at Lifespan Cancer Institute, and Assistant Professor of Medicine at Legorreta Cancer Center, at Brown University.

Listen to ASCO’s Journal of Clinical Oncology essay, “Preparing for the End Game,” by Dr. William Beck, a University Distinguished Professor Emeritus and Professor of Pharmacology and Molecular Genetics at The University of Illinois at Chicago. The essay is followed by an interview with Beck and host Dr. Lidia Schapira. Beck reflects on his own mortality and what it means to live, following his good friend’s illness and death from lung cancer.

TRANSCRIPT 

Narrator: Preparing for the End Game, by William T. Beck, PhD (10.1200/JCO.22.01758)

Recently, Jordan, a dear friend who had stage 4 lung cancer, died of his disease, a year and a half from his diagnosis. His tumor had activating mutations in the epidermal growth factor receptor, making him a candidate for treatment with osimertinib, a targeted therapy, one of the recent rewards of the remarkable advances in precision medicine. Jordan was my age, late 70s when he died. He was a lifetime nonsmoker, had several outstanding lung cancer oncologists, and was determined to fight his disease. That said, 3-year and 5-year survival rates for people with his disease are not high, but living beyond those years is statistically and biologically possible. That was not so in Jordan's case.

Jordan's illness was distressing to me because he was my good friend. We went back decades and began our academic careers together, and we bonded through our shared academic experiences and our love of good wines, food, books, humor, and politics. Over the course of his illness, I tried to think of how I could be there for Jordan and his wife, also a good friend, as he went forward on this very difficult journey. Jordan was very fortunate to have state-of-the-art medical care, a loving wife and adult children, and many close and caring friends who wanted to walk with him on this journey to the extent that he wanted us with him. Because I was in the cancer field, I was able to help him and his wife better frame the questions to ask his oncologists, understand the tests ordered and drugs he was taking, identify other oncologists for second opinions, and search the literature to help them find the best treatments to hold the tumor at bay.

Jordan's illness, however, was distressing to me for another reason. It made me think about my own mortality and how, if it were me, would I want to spend my last months and years, knowing that the end is now a reality. Jordan was a retired academic, scientist, and long-term and consequential university administrator. Like my friend, I have been retired for a few years, having run a productive academic cancer research laboratory and having held a number of administrative positions as well.

My distress was compounded by external events over these past few years. We have seen the deaths of so many people from COVID-19 in this country and the world, all so painful and many unnecessary. We have also seen the continued violent deaths due to guns and drugs. These, however, were largely deaths in the abstract; they did not have a face for me. That began to change with the extraordinary culmination of the epidemic of Black deaths at the hands of the police, especially the murder of George Floyd. These deaths brought home to me the face and randomness of death and fragility of life, writ large. The past year brought more faces of death to me: many prominent artists and baseball players, whose careers I had followed; internationally impactful cancer scientists and physicians, many of whom I knew personally; and the untimely death of the famous architect, Helmut Jahn, at age 81 years, in a bicycle accident. All these passings have given me pause in a way that I had not expected and starkly reminded me that there is absolutely no guarantee of a tomorrow. Indeed, I will no longer live by the brilliant conceit offered by William Saroyan: “Everybody has got to die, but I have always believed an exception would be made in my case. Now what?”1 Now what, indeed.

One frequently hears about people who have survived near-death experiences or those who have been diagnosed with a terminal illness, having an epiphany and wanting to live each day to the fullest extent possible. One also hears about realists who exhort us to live every day as if it were our last. Certainly sound advice. But do we normals really adhere to these dictums? Many people probably do, but my experience, both personal and from talking with friends, is that most of us still go about our lives doing the quotidian things that we have always done. There is always tomorrow, but Jordan's illness has caused me to rethink that. Indeed, it has become increasingly clear to me, finally, that I should not put off doing things for another tomorrow, a tomorrow that is not guaranteed.

Despite knowing—in the abstract—that much more of my life is behind me than in front, my good health and full days have led me to think that this can go on for some time, with the inevitability of death still relatively far in the future. Jordan's situation, however, has changed that perception and has got me thinking about how I would like to spend my remaining days, hopefully many, and thinking about how to really prepare for this end game, taking these final laps.

Paul Kalanithi, a young surgeon, wrote so tenderly in When Breath Becomes Air2 about his struggles while suffering the ravages of lung cancer and his hopes for his wife and young children. Even at my advanced age, I too have similar hopes for my wife, children, and grandchildren. And Christopher Hitchens chronicled, in Mortality,3 his last year with esophageal cancer as fiercely as he had always done in his critical atheist's view of the world. But it was not until Jordan's sickness and death that I have taken Hitchens's clear view of life's limitations to heart.

In his book, Being Mortal,4 Atul Gawande, the physician-writer, has chronicled both the advances and limitations that modern medicine has brought us as we face the end, including the complications that limit our autonomy in this passage. Gawande notes that as we age and become infirm, either as a normal process or because of disease, we become more dependent on medical and social networks that may, unfortunately, effect on our independence. Gawande suggests that a good death may be difficult to achieve but a good life less so. I saw this good life in Jordan's terminal illness. Indeed, another physician-writer, Oliver Sacks, emphasized in a short collection of four essays entitled Gratitude,5 the utility of a good and fulfilling life in helping us cope as we approach the end. Near the end of his life, as his body was being consumed by cancer, Sacks continued to do what he always did, for as long as he could: His days were always full, and he wrote beautifully of his clinical and social observations. Importantly, Sacks expressed enormous gratitude for his life as a sentient and thinking person, who loved and was loved, and whose life was consequential. What more can one want?

My friend Jordan was such an individual: sentient, smart, and funny; a man who lived a consequential and impactful life, who loved and was loved. His illness, however, was not one of going softly into the good night, as was depicted in the movie Love Story.6 Toward the end, my friend suffered with pain, balance problems, fractures from falls, shortness of breath, insomnia, and the like. But through it all, he presented, at least to me, an admirable grace and equanimity that gave us all hope that despite his suffering, there would be one more day, one more week, one more month.

My wife and I went out to northern California last winter to visit Jordan and his wife, and although unsaid, to say good-bye. But now, more than a half year later, he died, just days short of their 50th wedding anniversary. We have stayed in close contact with Jordan's wife since his death. The funeral was private, but my wife and I attended a subsequent memorial service for Jordan at which family, friends, and colleagues remembered him and his consequential life and bid him a proper farewell.

So, here we are. My good friend is gone, and his struggles have been hard to watch, even from a distance, but he has helped me see more clearly that this all does come to an end at some point.

So how do I want to pursue this end game? Certainly, I want to stay engaged in my science-related activities. But I also want to use what time I have left while I am healthy to spend as much time as I can with my wife and family, to be with good friends as much as they will tolerate me, to continue to read, to go to theater and concerts, to travel, finding humor in life, and enjoying good wines and food—all the typical things that people do and say they want to do as they approach the end game. Indeed, I want to do as many of these things as possible, but with a renewed sense of wonderment and gratitude, gratitude in the way Oliver Sacks expressed it. My friend, Jordan, the academic, still has some lessons to offer, so I will try to follow his example to live as good a life as possible, and if I become infirm, I will try to remember how he approached the end: with grace, courage, and equanimity and reflect on all the good things I have had in this life, with a great sense of gratitude.

Dr. Lidia Schapira: Hello, and welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one at: podcasts.asco.org.

I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University.

Today, we are joined by Dr. William Beck, a university distinguished Professor Emeritus, and Professor of Pharmacology and Molecular Genetics at the University of Illinois, at Chicago. In this episode, we will be discussing his Art of Oncology article, 'Preparing for the End Game.'

At the time of this recording, our guest has no disclosures.

Bill, welcome to our podcast. Thank you for joining us.

Dr. William Beck: Thank you, Lidia. I appreciate the opportunity. I think this is a unique and valuable feature of JCO, and I hope I can do it justice.

Dr. Lidia Schapira: It's terrific to have you. Tell our listeners a little bit about the motivation for writing about Jordan, and the effect that his illness and passing had on you.

Dr. William Beck: Yes. Well, his illness and death made me think of my own mortality, and how if it were me, would I want to spend whatever remaining days I have, hopefully, many. But hopefully, in a way that would allow me to honor his life, and also do justice to my own situation. So, that was the nexus of the issue. I spoke to a writer friend, Eric Lax, he's written a number of books; one is, The Mold in Dr. Florey's Coat. If you haven't read it, I highly recommend it. It's about commercialization issues during World War II, and he's written some other books as well, a book with the hematologist Robert Peter Gale on radiation. And I asked him what he thought about this, and he was very positive. As you, I'm not accustomed to opening myself up in the scientific literature. I write scientific papers, and they're not emotional. One might get emotional about the reviewer's comments, but that's another story.

And so, this was a difficult thing for me to write, but I felt if done correctly, it might be useful not only to help me articulate my own feelings, but it might be useful for others, especially oncologists with whom I've been around in my entire professional life, and who deal with these matters daily, as you do. But most likely, and of necessity, keep their thoughts and their own mortality locked away. And I sort of thought that this might be a way to help others think about ‘Preparing for the End Game’.

Dr. Lidia Schapira: You bring up some interesting points because in order to write a piece that will resonate with others, you have to allow yourself to be vulnerable, and that is not something that we are taught to do in our academic and professional lives. Was that hard for you?

Dr. William Beck: Very, yes.

Dr. Lidia Schapira: And how did you work through that period of deciding to make yourself vulnerable and then share that with colleagues whom you may never know or meet?

Dr. William Beck: Thank you for that question. I wanted to write somewhat of an homage for my friend, Jordan, and that made it a little easier to open myself up. And I might add, I shared this, after it was accepted, with Jordan's family - his wife, who is a friend, and his two adult children. And they all very, very much appreciated what I had done. So, I felt I was on the right path with that. So, it was in part for an homage to Jordan, and I had walked with him and his wife during his illness, and then with his death, and I wanted to mark the event in a way that I felt more than just giving money to a memorial fund. I felt I wanted to make it very personal, he was a good. I don't know if that answers your question, but that's why I started it.

Dr. Lidia Schapira: In thinking about your essay and the way you chose to honor your friend and his memory, what do you think is the message for some of our young readers?

Dr. William Beck: That's a good question. I put myself in the 40-year-old Bill Beck mindset, and back in those days, as I said in my essay, you know, everyone has to die, but in my case, I thought an exception would be made. Jordan's death, and those of others around my age have led me to understand that an exception will not be made, and I want to make the best of it, and if our young readers who know that this is an abstract that's very far away, but it becomes more and more of a reality as you approach the end, and I'm guessing that our younger readers who are oncologists can wall that off with difficulty, but can wall it off to a certain extent. But it's there. It's inescapable, and so, maybe preparing early, if it even makes you think about enjoying a little bit more time with your kids, enjoying a vacation for another day, or even putting a little bit more money away for your IRA for your retirement, that could be very useful for them.

Dr. Lidia Schapira: On the flip side of that, Bill, you write in your essay that you have continued to remain involved in your science, and I imagine that's because you love your science. So, tell us a little bit more about how you're thinking now, as you are mature-- I won't use the word senior, or old, about continuing to remain involved in a career that is not just work, but something that you love.

Dr. William Beck: I could not imagine retiring. What I enjoy about my retirement is that I basically do everything that I did before, except the administrative part - the running a department for so long. And I do it on my schedule, not somebody else's schedule, and that is liberating. I just came back from a two-hour lecture that I gave yesterday; I mentor young people, I review grant applications and manuscripts, I read the literature. So, I stay involved. I can't imagine not being involved. And as Oliver Sacks, whom I've cited in the essay, he went at it all the ways best he could all the way to the end, and I hope that I will have that opportunity to do so as well.

Dr. Lidia Schapira: What advice would you have for some of our listeners who are themselves accompanying a friend who is ill, or perhaps a relative who is facing a chronic or terminal illness?

Dr. William Beck: I'm loath to give advice, but I would suggest that they might want to be there as much as their friend wants them to be there for them. To be there, and for them to know that they're there. I was in a unique position because I knew a little bit about the cancer field, and I could help Jordan and his wife navigate the shoals of interacting with physicians, and understanding their drugs, and getting second opinions, actually, for them. So, I was in a fairly unique position, but I think that the key thing is to be there to the extent that the individual wants you to be there with them is important. That's what I've learned from my deep emotional involvement with Jordan, but with others as well.

Dr. Lidia Schapira: As you know from reading the essays we've published in Art of Oncology, Grief is a common theme, and I ask many of our authors to recommend, perhaps, some books they've read, or works of art that have helped them in processing their own grief. So, let me ask you if you can recommend any books, or poems to our listeners.

Dr. William Beck: I'm not much into poetry, but I did happen to see an amazing interpretation of Psalm 23 on the Jewish Broadcasting Network recently that was eye-opening to me as a non-religious person. That was very interesting. In terms of books, I think a good start is the beautiful essays of Gratitude by Oliver Sacks. I've started to peel into, and peer into a book on Morality, by Jonathan Sacks-- no relation, I don't think. He was the Chief Rabbi of the UK. And in terms of art, I can think of music - the ‘Pastoral’, by Beethoven, and the ‘9th’, by Beethoven, are the ones that just are so uplifting to me, that I think would be very important to calm one's soul. Also, if I might add, The Stones are pretty good too, for that.

Dr. Lidia Schapira: So, let me conclude our interview by asking you a little bit more about the role of storytelling, and essays, and narrative, in helping us come together as a community of professionals who are actually dedicated to looking after patients who are seriously ill. How have you used stories in your approach to Medicine and Academia, and what do you see as the role of these narratives in the future education of oncologists and hematologists?

Dr. William Beck: So, I think young people, especially, need to hear stories of how these things begin. They need to hear origin stories, and middle stories, and end stories. Joseph Campbell, is one who's delved into where we came from, and about storytelling, as being very important in development of societies and traditions. So, I've tried in my work, even though it's scientific work, and maybe some of my reviewer critics would say, "Well, it's all stories and fables," but I've tried to develop several lines of science storytelling for our colleagues. And I think in general, whether it's in science or this kind of essay, yes, it's very important that the young people get outside of the, "What do I need to know for the exam?" mentality, to look at the bigger picture; and I'm afraid that's getting lost in modern education. The guy who introduces me, when I give the general lecture to all the students who are first time, first day in the room, never to be in the room again, always says, "And Dr. Beck won't answer any questions about what's on the exam."

Dr. Lidia Schapira: Well, I thank you for sharing some of your humanity with the readers of JCO, through the essay. I know, as you told us, during the review, that you're not used to writing these kinds of essays, and you're much more comfortable with scientific work. But I think we need to show the human side of our scientists. I think that Jordan's family is right in thanking you for the tribute you paid to him through this essay, and I'm very glad that you did write it, and decided to share it with us.

Dr. William Beck: Thank you. Well, I'm really glad that you have this venue, and I'm honored to have my essay published in it. I thank you, and your colleagues.

Dr. Lidia Schapira: Thank you, Bill.

Until next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, wherever you listen. Be sure to subscribe, so you never miss an episode.

JCO’s Cancer Stories: The Art of Oncology is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review.

Bio:

Dr. William Beck is a university distinguished Professor Emeritus, and Professor of Pharmacology and Molecular Genetics at the University of Illinois, at Chicago.

Listen to ASCO’s Journal of Clinical Oncology essay, “Being on The Other Side; An Oncologist’s Perspective on Grieving,” by Shannon MacDonald, an Associate Professor at Harvard Medical School and a Radiation Oncologist at the Massachusetts General Hospital & Mass General Brigham. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Shannon MacDonald. MacDonald shares her experience with grief, loss, and love after her husband was diagnosed with a mitochondrial disorder that ultimately took his life. MacDonald explores what grief means and how it can be different from what you originally imagined.

TRANSCRIPT

Narrator: Being on the Other Side: An Oncologist’s Perspective on Grieving, by Shannon MacDonald, MD (10.1200/JCO.22.01363)

As an oncologist, I had cared for patients facing grave illness and death. I imagined the loss of loved ones and expected grief to be an unbearable sadness, most poignant in the earliest days and lessening with time. I somehow expected that counseling people who grieved would make me more prepared. When my husband Dan died at age 42 years, I realized that I had no idea how grief felt. It was surreal and disorienting, I was displaced from a life that made sense into a new reality, one my mind acknowledged but my heart and soul would not accept.

Dan’s initial diagnosis offered a glimpse into a different life. It was unsettling but included us both. When we were newly engaged, Dan abruptly lost vision in one eye quickly followed by the other. I vividly remember the dark, neuro-ophthalmologist’s office in New York City where I was a resident. I sat next to a young medical student who appeared fascinated as my 31- year-old fiance´—who did not yet appear blind— struggled to count fingers or the big E projected on the wall before us. As unremarkable magnetic resonance imaging, spinal tap, and laboratory results were posted, rare disorders floated into the differential. Dan had a mitochondrial disorder. My fiance´ had transformed into a medical student case study.

It is not possible to understand the impact of a life-altering diagnosis until you are on the receiving end. How dramatically life can change in an instant. How painful the guttural yearning to go back in time can be. Dan and I both came from healthy, loving, families and had a close knit and fun group of friends. Dan had an MBA and ran a family company. I was a doctor in training. We lived active, full lives with plans for our future. We had no medical problems, and although aware as an oncologist that a medical diagnosis can derail a healthy young person’s life, we or I never thought this could happen to us.

In the weeks that followed Dan’s diagnosis, his vision deteriorated. We retreated into a world that included just us. We moved our couch just a few inches from our television. I read menus to Dan at restaurants, and he corrected my mispronunciation of ingredients. I took over as our driver despite being a city dweller with little driving experience. We got handicapped plates, a cane, researched seeing eye dogs, and had a conversation that abruptly ended when I uttered the word “Braille.” One night when I asked why he could not fall asleep, Dan answered, “I am afraid I won’t be able to see your face when I wake tomorrow.” We left the lights on and did not sleep that night.

Fortunately, Dan’s vision loss was not complete and, although painfully slow, he recovered some of his sight. Over time, he reintegrated into his friend circle and work with adaptions and the help of a low vision clinic. We were grateful throughout. Dan was an avid skier and was able to ski again once he realized that muscle memory was more important than vision. With time, he no longer appeared blind. He gained the confidence to return to contact lenses, which allowed him to remove his glasses and sunglasses that hid his eyes.

Dan had to face additional challenges. He developed bilateral avascular necrosis of his hips from the single dose of steroids given to him when multiple sclerosis was thought to be his diagnosis. This led to bilateral hip replacements and a year on crutches. This experience taught me to appreciate the subjective nature of function loss: I had perceived vision loss would have the most profound impact on his quality of life, but undergoing hip replacements and loss of mobility were unequivocally worse for Dan. In fact, this triggered such emotional distress that it challenged our relationship more than ever. Anxiety dominated over depression, and rather than medication, Dan used alcohol to soothe his pain. Over time, with therapy and lots of tears, we accepted this life with appreciation for what is truly important and we learned to ignore the trivial. We grew closer than ever, and, for this, I will be forever grateful. I find comfort in the thought that we lived together with more emotion and a deeper passion for each other and for life.

Dan died of a sudden cardiac event during a business trip. When his dad called to tell me the news, I was doing yoga, and I recall him asking me “are you sitting down?” So, I kneeled on my yoga mat. I can’t recall how many synonyms for death he attempted before he was forced to say the word “dead” to make me understand what had happened. When I got off the phone, I quickly called my sister and bluntly said “Dan is dead” and then repeatedly apologized for not asking her if she was sitting before I told her. I was derailed. I felt utterly unprepared for a life without the man who provided me with guidance, confidence, and experience that I had not had on my own.

I never knew what true anxiety was until his death and would never again feel anxious about public speaking after giving his eulogy. I will forever be grateful for the people in my life who sat with me silently, fed me, and even slept in my bed in Dan’s place. They would later recall memories in those early disorienting days that I did not. After reading that people often sigh when grieving, I asked my friend Alice if I ever sighed. She looked surprised and responded, “Shannon, you cried softly and sighed all day long.” When I was disappointed that I never dreamed that Dan was alive or woke up having forgotten that he was dead, those closest to me said that I would wake in the middle of the night reaching for him, realize he was not there, and then settle back into some sort of sleep.

After his funeral, I became obsessed with determining exactly how he died, as if figuring it out could bring him back. The wait for final autopsy results was excruciating, but the findings of a hypertrophic cardiomyopathy likely related to his mitochondrial disorder was utterly unsatisfying. I remained convinced that if I had joined him for that business trip as I had planned to, I would have been with him, and he would still be alive. I still believe this. I also remember telling his father about my feelings of guilt, and he replied with both surprise and relief saying, “I feel so guilty too.” For months, I could not think of any future and preferred to live in the past. The sadness of missing him was more comforting than the thought of moving forward in a life that did not include him. Although I never thought of doing any harm to myself, I remember spending an hour convincing a patient to accept treatment for an advanced cancer only to walk out of her hospital room thinking that if I were her right now, I would do nothing and welcome death.

With the support of friends, family, and therapy and the passing of time, I slowly became more functional and was able to reintegrate into society. My grief morphed into anxiety and feelings of guilt when my memories of Dan became less vivid as if I was not honoring him enough. When I finally had the courage to pack his clothes to give to charities, I was saddened that it evoked less emotion because they no longer carried his scent. What I had thought of in the past as “moving on” and a healthy step in the grieving process was not a simple forward advance but came with a longing to return to a period of greater grieving. Moving on and making new memories made me feel disloyal, as though I was abandoning him. With time, I came to accept my new life that was so different than the one I had planned.

Eventually, I reached that place that Didion described: “I know why we try to keep the dead alive: we try to keep them alive in order to keep them with us. I also know that if we are to live ourselves there comes a point at which we must relinquish the dead, let them go, keep them dead.”1 But this took time, support, and a disciplined effort to change myself by reimagining my values and creating a new identity that did not include my husband or the children we planned to have together. My evolution aligned with the teachings of social scientist Boss,2 who refuted the idea of finding closure and instead posited that we must learn to live for a future that contains the loss. I learned over time to accept the discomfort it caused me to speak of him in the past tense. I could be true to myself; my identity was shaped by Dan but not in the present. I learned to say “I” instead of “we.” I accepted that my niece and nephews—and all my patients with pediatric cancer—would be the children in my life. I met a man and partner secure enough to be with a woman who speaks about a man she loves that is not him.

Grief is personal, and I am only an expert in my personal grief. I found the support from colleagues, family, and friends helped me, but they could not make me feel close to my old normal—only Dan’s return could have done that. I learned that some people simply could not acknowledge the loss and that in turn had a profoundly negative effect on our relationship. Even a card or e-mail would have sufficed, but silence created an awkwardness that was hard to bear. I was told by a coworker that a colleague had tried so many times to say something to me but was too afraid that he would say the wrong thing, so he said nothing. Hearing this helped me understand how his silence was not because he did not care but because his fear of hurting me by saying the wrong thing was paralyzing. I also discovered that avoiding conversation that included Dan made Dan feel more dead. I would have preferred to speak of him, even if this made me emotional.

I learned to answer the “how are you” question by replying okay, as I could not lie and say “well.” When my nephew died, I texted my sister daily “How are you on a scale of 1- 10?” She loved this. People said perhaps well intended but strange things, such as “don’t worry. You are young and will marry again.” and “you are lucky you did not have children and you will be a mother to somebody else’s children.” With these comments I heard, “Dan is replaceable” and “it is good thing that you don’t have a piece of him in a child you shared.” I recognized that I sometimes needed more space and that loneliness can feel unbearable. I had no way of predicting my needs, which made it difficult to plan ahead. I found it took years to work through my emotional pain and am forever grateful to those who believed in my ability to heal myself.

Dr. Lidia Schapira: Hello, and welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care.

You can find all ASCO shows including this one at podcast.asco.org. I'm your host, Dr. Lidia Shapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University.

Today, we are joined by Dr. Shannon McDonald who's an associate professor at Harvard Medical School and a radiation oncologist at the Massachusetts General Hospital, and Mass General Brigham in Boston.

In this episode, we will be discussing her Art of Oncology article; “Being On The Other Side: An Oncologist Perspective On Grieving”.

At the time of this recording, our guest has no disclosures.
Shannon, welcome to our podcast and thank you for joining us.

Dr. Shannon MacDonald: Lidia, thank you so much for having me. It's a pleasure and privilege to be here today.

Dr. Lidia Schapira: I'd love to start by having you tell us a little bit about what motivated you to write this essay that is so personal and so important, and to share it with the large community of oncologists.

Dr. Shannon MacDonald: So, writing it was easy. I found it very cathartic to write about my experience. So, the act of writing it, I did over many years.

I started it soon after Dan died, picked it up a couple of years later, and then put it away for a long time, and recently was motivated to pick it up and start writing again based on reading “Beautiful Boy”, which was one of the Art of Oncology pieces and also, based on another medical narrative that I wrote just before this one.

And the decision to publish it and make it public was a little more challenging. Dan was a very private person. We spent many years being very private about his medical problems. He never wanted to be seen as having a disability or a medical issue.

I think he was wise enough to know he'd be perceived differently, but I made a decision when I gave his eulogy to share some of his medical history and how brave I think he was during that time.
And I think one of the reasons to publish it was to help others. I found reading very helpful when I went through this experience and I think helpful in my career as an oncologist, and reading people's stories, short stories, books, any type of reading about the human experience is helpful to try sort of put yourself in those shoes and try to understand what it feels like.

And I was also motivated by giving a few talks or joining others to give talks on grief during the pandemic and speaking about my experience and was told by colleagues a long time ago,’ we just want to know how it feels’.

And when I gave these talks, I think residents in particular, but also, colleagues of any age were very grateful for the sharing of my experience. And it made me feel sharing this was meaningful.

Dr. Lidia Schapira: And when you talk about how it feels, the sentiment I took away from reading the essay, and I've read it many times, is how raw that felt.

And your wisdom in saying that you had lived as a professional in a culture that's immersed in grief, and you were exposed to suffering, and the suffering of children even, every day in your professional life, and yet you were unprepared.

Can you talk a little bit about what you felt helped you to learn to accept and move on or live with Dan's absence?

Dr. Shannon MacDonald: Yeah, so I think what you said about being totally unprepared and what I said in my essay was completely true. I guess, I thought somehow that seeing patients suffer, seeing them lose loved ones, seeing parents lose children would have somehow made me more prepared, but it did not at all, I was completely caught off-guard.

And I remember calling a colleague who was also 40 and she lost her husband suddenly, about three months after I lost Dan. And one of the first things she cried out when I called her is, “I can't believe I had no idea what this felt like.”

And I think that that resonated with me, I felt exactly the same way, and that's what I answered back to her. And as much as we live it and see it every day, it's so different being on the other side of it.

I think we see the illness, the sadness, and you think of it for moments. You can't think of it every moment of every day. And I remember hearing people say that person that I lost is in my mind every moment of every day, and I couldn't understand that, but it's true.

Somehow, it's constantly there. Even though Dan was gone, he was constantly there, and to do anything meant sort of pushing him out of my mind in order to do another task. And that part is the part that I think is unimaginable. And why would you want to imagine that, and how could anyone? And that is the part that we don't see.

And I think as oncologists, we see our patients through a tremendous amount of suffering. We see them at the time of death of a loved one, and then we see them shortly after, but we don't always see them in the weeks, months, years after that loss.

So, it was that part that was so unknown to me until that happened. And I think you do what you can to get through it. It's not easy, it's messy, and it's hard. And I can't say that I could give someone advice on how to get through it in a better way. I think you just have to go through it. And that was yeah, the experience I learned from my loss.

Dr. Lidia Schapira: So, you say that it's messy and complicated, and in your essay, you reflect also on the reaction that you had or the way that your colleagues responded to this catastrophe that took you by surprise.

It was not as if Dan had a chronic illness and was approaching the end, this was totally unexpected despite the fact that he did have an illness. And you talk about the silence of your colleagues as a wound. At least that's the way I interpret it. Can you talk a little bit about that?

Dr. Shannon MacDonald: Yeah, and it's silence of colleagues and also friends. But I think for me anyway, I can only speak about my personal experience — that was the hardest because it created this awkwardness that was hard to get past.

So, in my opinion, it's better to say anything or write something if you can't say something. But also, I also have learned, and I understand that it's just so hard and people are so afraid of saying the wrong thing that it's natural to avoid it or to try to say something, and then be too nervous to say something.

But I guess, my advice would be to try to write or say something rather than saying nothing because it's so awkward when nothing is said, and it creates an additional stress on that person that's grieving, and sometimes, a sad loss of a relationship for a time or forever.

Dr. Lidia Schapira: Sounds like you have used your experience to now, talk about and write about your personal grief, and you're seen perhaps, as a resource for others or a teacher. What does that feel like?

Dr. Shannon MacDonald: It feels good. I'd like to be that as much as I can be. Again, it's only my personal experience. I've received feedback that it's helpful, but I'm sure I wouldn't receive feedback that it was unhelpful or negative feedback.

But I think that makes me feel like there's some meaning to the writing and the work that I've done, in speaking to others. And I think there's a lot of oncologists, maybe particularly those new to training that are eager for more teaching in the human experience of what we see every day.

They certainly want to learn the trade and the skills, and they can find that in textbooks and in our teaching, but the humanistic part of it is more difficult to learn.

So, it's been very rewarding to have colleagues and residents tell me that it felt great to be able to ask in a comfortable setting how it feels to have someone die, so that they can understand better how their patients feel.

Dr. Lidia Schapira: Can you reflect a little and share with us some of the sort of milestones in your sort of recalibrating and being able to find joy, and then find a relationship and transform your experience into part of who you are and carry with you, but in a way sort of embrace this new place in your life?

Dr. Shannon MacDonald: So, I'd say a lot of steps forward and steps back. And if anyone had told me I would be as happy as I am again, now, right after Dan died or within the first year after he died, I would've said no way, that's never going to happen.
I'd say in the initial time of his death and months after his death, I had no desire to ever date or be with anyone again. As I mentioned in my essay, it was easier to live in the past than to think about the present in an identity that was no longer what I knew was my identity or the future, was daunting.

And I would say, again, time is different for everyone, but maybe after 10 or 11 months, I could be happy again. I could enjoy friends, I thought I was ready to date. And one of my best friends said, “I don't think you are.” And I said, “I think I am.” And then I wore my wedding ring on the first date I was set up on.

And I thought maybe foolishly, “Oh, I don't think he noticed or he cared. He knew I was widowed” and he did. And we didn't go out on another date. But in time, I learned to date other people and not feel guilty about it or disloyal to Dan.

As I mentioned, I met someone who allowed me to speak of him, which was very important for me that I not lose that past part of my life, and that person could still come forward into new relationships and new friends and family.

I still am very close to my in-laws and keep them as part of my family. And I think that keeping my old identity and what Dan did for me and how he shaped me was very important to me in moving forward.

And I feel that I'm able to do that now, and know that he lives on in the person he made me, and the other people that he shaped in his life that was too short.

Dr. Lidia Schapira: So, the question I'm sure on our listeners’ minds is how has that impacted you in your professional life as a radiation oncologist?

Dr. Shannon MacDonald: It allows me to be probably more empathetic rather than sympathetic. I remember being taught in medical school, in my psychology rotation that you can only truly be empathetic if you've been through something. And it's still similar, everyone's experience is different.

But for some patients, I think it allows a little more empathy. I think in the initial months, years after Dan died, I was too empathetic. I was too sensitive to the losses that other people experienced.

And that made me realize that somehow, maybe I built up some desensitization over time that was very subtle. And after Dan died, I worked hard to build that up again to allow me to work with patients and not be too sad and too empathetic, or too upset by what was happening to them.

And I do think that that has happened again, but it's beautiful to be able to empathize, but hard to empathize too much.

Dr. Lidia Schapira: So, in the last few minutes, Shannon, I'd love to hear your take on the value of narratives, of stories to bring these topics to our discussions in the clinic, to the curriculum of our trainees, and I think create a community of people who really deeply care about our lived experiences and want to support each other.

Dr. Shannon MacDonald: So, I think they're extremely important. I love the narratives. I always look at Art of Oncology and I love the New England Journal of Medicine ‘Perspective’, and JAMA’s ‘Piece of My Mind '.

And I also found books; Joan Didion's, The Year of Magical Thinking, and also, those stories by Emily Rapp Black, The Still Point in the Turning World; When Breath Becomes Air by Paul Kalanithi. I think those are three books that I tell my residents to read and narratives, I think we need more of that in the curriculum for our residents and students. And I do feel like there's a generation that is craving that more.

I don't know if you've seen this in the residents you mentor, but, in ours, I feel that they're asking more and more for that to be part of their curriculum more so than they had a decade ago. And it may be that this generation is just more comfortable speaking about feelings and acknowledging that that's an important part of medicine.

And we want to cure patients. We want to help them live with their cancers for a long time with a good quality of life, and we aim to do that. But the reason we aim to do it is so they can have a human experience. So, that part is so important. It's why we do what we do. And I think that it motivates us to take care of our patients and help them to live as well as they can with their disease.

Dr. Lidia Schapira: And we become part of their stories too. I've often thought that in some ways, if we have a strong relationship with patients, we are invited to co-edit those illness narratives, and what a privilege that is.

Dr. Shannon MacDonald: I agree.

Dr. Lidia Schapira: My last question is; what are you reading now?

Dr. Shannon MacDonald: So, what I would recommend that I've recently read for the Art of Oncology listeners would be Between Two Kingdoms by Suleika Jaouad. I love that book. It's also a great audio book. She narrates it herself and does a beautiful job with that.

I also recently, probably a year ago now, read Sanctuary by Emily Rapp Black, which I thought was very meaningful as well. So, for your readership, those are two books I would recommend.

Dr. Lidia Schapira: Well, Shannon, thank you for an extraordinary essay, for the power of your conversation. And for our listeners, until the next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or a review wherever you listen. Be sure to subscribe so you never miss an episode of JCO’s Cancer Stories: The Art of Oncology that is just one of ASCO's many podcasts.

You can find all of the shows at podcast.asco.org.

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Additional Reading:
My Beautiful Boy

Bio:
Dr. MacDonald who is an Associate Professor at Harvard Medica School and a Radiation Oncologist at the Massachusetts General Hospital & Mass General Brigham in Boston.

Listen to ASCO’s Journal of Clinical Oncology essay “Mudras in Medicine: A Role for Dance in Appreciating Non-Verbal Communication in the Clinical Encounter,” by Drs. Maheetha Bharadwaj, Nagda Dipal, et al. Essay authors Dr. Bharadwaj, a urology resident at the University of Washington, and co-author Dr. Dipal, a medical student at Harvard Medical School, are interviewed by host Dr. Lidia Schapira. Drs. Bharadwai and Dipal provide insight on how they use non-verbal communication in the form of Bharatanatyam, an Indian narrative art form, as a way to reflect oncology patient care.

TRANSCRIPT

“Mudras in Medicine: A role for dance in appreciating non-verbal communication in the clinical encounter,” by Maheetha Bharadwaj, MD, MS, Mphil; Dipal Nagda, MPH1; and Lipika Goyal, MD, MPhil  (10.1200/JCO.22.00657)

Narrator: We present a classical Indian dance piece that depicts a patient and their partner receiving a cancer diagnosis from their oncologist. The primary purpose of this piece

was to provide a vehicle for patients, physicians, and caregivers to process a life-altering cancer diagnosis. The piece was choreographed and performed by two of the authors (M.B. and D..), who are medical students and classically trained Bharatanatyam dancers, and the project was guided under the mentorship of the senior author (L.G.) who is a medical oncologist. Through the process of designing this project during the COVID-19 pandemic, the authors also reflect on the role of visual arts in providing a space for contemplation and in promoting nonverbal communication in the era of virtual medicine.

Mudras, or hand gestures, embody one of ancient India’s most visual forms of storytelling and are the threadwork of the Indian classical dance form of Bharatanatyam. Historically performed as a temple dance, Bharatanatyam serves as a vehicle for communicating and preserving narratives from Hinduism’s greatest epics.1-3 Every mudra is intricately crafted and distinctly designed, with each bend of a finger and curve of the wrist representing an object, an emotion, or a state of being. Mudras are interlaced with rhythmic footwork and facial expressions in Bharatanatyam, producing a language that connects the performer to themselves, to the audience, and to the story being told. The style of Bharatanatyam specifically has been previously adapted for therapeutic relief and healing among survivors of natural disasters and victims of trauma. Although some artists have explored the use of Bharatanatyam to convey medical narratives, none to our knowledge have directly covered the nuances of clinical relationships in the context of a cancer diagnosis.

A few weeks after the onset of the COVID-19 pandemic, we found ourselves in an exchange of mudras over coffee on the patio. As both medical students and trained Bharatanatyam dancers, we were lamenting the difficulties of communicating to patients with masks. “He couldn’t hearme,” one of us expressed. After some pause, the other extended her right hand in

Katakamukham toward her chest, whereas her left hand also in katakamukham drifted toward her ear, together signifying a stethoscope. “Is this how you asked your patient if you could listen to their heart?” she asked. We both smiled. With her hands in place, she leaned her torso to the left and extended both hands in chaturam. She painted a rectangular frame in mid-air, signifying a chest x-ray. In silent melody, we played call and response, gliding our hands across the table and delicately placing our fingers into mudras.

As case counts ticked upward, distressing news filled our personal and professional lives and we both found ourselves turning to mudras to express our states of emotion and responses to the pandemic. It dawned on us that dance may play a critical role in reflecting on and processing difficult medical situations, especially in the isolating environment of the pandemic. We thus embarked on a project to explore the relationship between a patient and an oncologist through Bharatanatyam. Over the course of our clinical years in medical school, we collaborated with patients, clinicians, caregivers, and artists to choreograph this Bharatanatyam narrative medicine project. Mudras were combined with facial expressions, eye movements, and footwork to craft a narrative between a patient, a doctor, and a caregiver in the setting of a cancer diagnosis. In what follows, we describe our choreographic process, the resulting narrative, and

key takeaways from this artistic exploration. We propose a role for Bharatanatyam and other visual arts in enabling both the performer and the viewer to process narratives of cancer, suffering, healing, and hope. We further use this piece as a call to reclaim the

importance of nonverbal communication in the therapeutic relationship.

Developing and Choreographing the Narrative

We first reached out to several physicians to help develop a medically accurate narrative. Our clinician collaborators included an oncologist who specializes in cholangiocarcinoma, a hematology-oncology fellow, two head and neck surgeons, and a palliative care physician. Our patient and caregiver collaborators included three patients undergoing treatment for metastatic cancer and two parents. Through multiple conversations with these partners, we developed our narrative. For musical and artistic input, we partnered with Indian Raga, an organization dedicated to the celebration of South Asian art and music. Indian Raga developed a musical score for the piece, provided a dance collaborator, and offered creative feedback on our choreography.

Our choreographic process was iterative, as we moved from the dance studio to conversations and back again to the dance studio. We incorporated the feedback from our collaborators into our storyboard and our final choreography. We recorded the performance on March 1 31, 2021, at the Cambridge Community Center for the Arts, in Kendall Square.

The Dance Narrative

A video of the performance can be accessed at https://youtu.be/Nru_nWiiDXk.

Our narrative details the journey of receiving and processing a cancer diagnosis and features three members of the therapeutic triangle: the patient, the caregiver, and the physician.

Part 1: The diagnosis (0:00-2:05). The first part opens with a couple that, amid a jubilant celebration, receives an urgent phone call to present to their doctor’s office. At their appointment, the physician performs a history and physical examination and subsequently prepares to disclose the patient’s diagnosis of a worrisome mass visualized on a chest x-ray. We drew from mudras in the existing Bharatanatyam repertoire to depict clinical objects. For instance, a stethoscope was depicted using katakamukham as the earpiece and the bell, whereas an x-ray was depicted by drawing a square in the air using chaturam.

Part 2: The malignancy (2:05-3:20). The second section represents an interpretation of the physiologic growth and uncontrolled spread of malignancy. Our change into redcolored

garb signifies a switch in character from representing three individuals to three cells. At the beginning of this section, the three cells are depicted as physiologically

normal, dancing in unison with each other. Their uniform vitality is demonstrated with the suchi and alapadma mudras. One cell undergoes a somatic mutation and becomes malignant, gaining ruthless vigor in her dance form. We demonstrate rapid replication of the malignant cell with the mudra kartarimukham. As the malignant cells continue to replicate, they pull resources and grow in their harsh dynamism, portraying the unchecked growth potential of cancer cells.

Although the choreographic intention of this section was to represent a growing malignancy, many of our reviewers provided varying interpretations, including a depiction of the patient’s inner anxieties, the therapeutic fight against the cancer, and the turmoil of treatment resistance.

Part 3: The emotion (3:20-5:05). The third and final section returns to the patient, doctor, and caregiver. Here, we explore the nuanced emotional journeys of the three characters as they come to terms with the gravity of a cancer diagnosis. Each has their own moments of grief, fear, recognition, and solidarity. The caregiver expresses concerns of the patient passing, and the doctor struggles with her ability to offer hope. The patient is overwhelmed with denial, anger, and grief. The piece ends in a message of unity, as the patient, doctor, and caregiver embrace their role in this shared journey.

Reflections

What began as an exchange of mudras over coffee blossomed into a reflective process to understand the role of Bharatanatyam within the therapeutic triangle of the patient, doctor, and caregiver. Witnessing how reviewers who were unfamiliar with Bharatanatyam responded to our narrative dance piece shed light on common themes that emerged from engaging with this piece. Here, we describe two key takeaways that surfaced through our own reflections and discussions with members of the medical community. First, we were reminded of the role that visual art

holds in promoting self-reflection and empathy for all members of the therapeutic relationship. Second, facial expressions and body language from the dance narrative resonated with the experience of oncologists and patients in the clinic. The repeating motif of body language served as a critical reminder of the role of nonverbal communication in the therapeutic relationship. In the era of virtual training and medicine, we use performative arts as a reminder to deliberately preserve nonverbal communication when interacting with patients.

Visual arts as a space to process, reflect, and empathize.

Our dance narrative received a range of interpretations, only some of which matched our original intention. These similarities and differences in choreographic intention and audience interpretation demonstrated the power of visual arts in both representing universal emotions and reflecting one’s personal experiences. For us as choreographers, the dance studio became a space of contemplation and healing. We dissected the impact of illness on the human body, adjusting our limbs and contorting our faces to embody raw human emotions of pain, anguish, and resilience. As viewers, patients and physicians also expressed moments of reflection

while processing our piece. For example, many physicians discussed how the piece reminded them of the personal toll that repeated delivery of bad news can take on them as a clinician. Although one clinician thought that this difficulty in delivering bad news was best represented by the emotional end of the piece, another felt that this internal turmoil was better portrayed through the middle section that consisted of more intense footwork. Engaging with our dance piece encouraged viewers to recognize certain universal clinical themes while also providing room to reflect on nuanced personal experiences.

As a broader entity, visual arts have often been underrepresented within the field of medical humanities. Searching the literature for examples of visual arts curricula across medical schools across the United States yielded a plethora of prose and painting-based visual arts curricula yet very scarce incorporation of movement-based art.7-10 We propose that dance plays an important role within medical humanities curricula in understanding illness, emotions, and empathy. Movement-based arts promote a sensory experience of illness and an expression of physical and emotional states that cannot be conveyed through words alone.11 With more medical training programs embracing humanities in clinical training, we attest that the visual arts, particularly movement-based art, should also be considered.

Recognizing the value of nonverbal communication. As the COVID-19 pandemic progressed, virtual medicine replaced in-person encounters and masks grew to be a necessary

component of the hospital environment. Like many, we encountered muffled words and frozen facial expressions on Zoom. Faced with the dramatic change in verbal communication as medical trainees, our choreography unfolded into an exploration of the ways in which physical space, facial expression, and hand gestures enhance the clinical relationship.

Early in our choreography, we shared a rehearsal video with our collaborators. Although all immediately recognized the\ role of the patient and the doctor, several felt that something critical was missing. One patient felt that the physical distance between the doctor and the patient was too great, and one physician pointed out the lack of compassionate physical contact by the oncologist. Inspired by these conversations, we re-entered the dance studio and

experimented with the physical space our bodies occupied. We explored nonverbal ways to convey care and concern. In our choreographic revision, we had the doctor place a hand on the patient’s shoulder when she was coughing, and we incorporated a stool to allow the provider to be eye level with the patient and increase the portrayal of open communication. Intentionally incorporating the empathetic touch into our choreography increased the perception of care between the doctor and the patient.

In a time where we are forced to embrace virtual care and communication, our choreographic process reminded us of the critical role of nonverbal communication in the therapeutic relationship. We found that physical space, facial expressions, and eye contact are just as integral to the clinical encounter as they are to Bharatanatyam. What we have lost through the screen is the unspoken care held in the extra moment of eye contact, the supportive forward lean

of the torso, and the comfort of a hand on the shoulder. These wordless extensions of care are a cornerstone of patient satisfaction and the therapeutic alliance. With masks and virtual visits becoming potentially permanent fixtures in medicine, we highlight the importance of trainees

and clinicians being deliberate in using nonverbal communicative techniques in caring for patients.

In our exploration of Bharatanatyam within Western medicine, we found that, ultimately, the qualities most coveted in a dancer and a physician are one and the same: a broad understanding of the human body, a deep sense of empathy and humility, and a profound commitment to using body language to support the journeys of themselves and those around them.

Dr. Lidia Schapira: Hello, and welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO podcasts, which cover a range of educational and scientific content, and offer enriching insight into the world of cancer care. You can find all ASCO shows, including this one at: podcasts.asco.org.

I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University.

Today, we are joined by Dr. Dipal Nagda, medical student at Harvard Medical School, and Dr. Maheetha Bharadwaj, urology resident at the University of Washington. In this episode, we will be discussing their Art of Oncology article ‘Mudras in Medicine: A Role for Dance in Appreciating Non-verbal Communication in the Clinical Encounter.’

At the time of this recording, our guests have no disclosures. Dipal, Maheetha, welcome to our podcast, and thank you for joining us.

Dr. Maheetha Bharadwaj: Thank you for having me, Dr. Schapira.

Dr. Dipal Nagda: Thank you for having me. It's a pleasure to be here.

Dr. Lidia Schapira: So, tell us a little bit about the origin for your narrative. You've told us about your collaboration in dance, and your appreciation for what movement and dance can bring to self-expression and to the clinical encounter. But let's start by hearing what brought the two of you also to collaborate on a narrative, a written piece.

Dr. Dipal Nagda: I'm happy to get started on this one. So, Maheetha and I met our first year of medical school and we hit it off right away for a variety of reasons, one of which was that we both shared a training in Bharatnatyam. And so, we had actually performed early in our first year of medical school, a piece for a local performance at Harvard, and then, around the start of the COVID pandemic, which was about two years into our second year of medical school, right in the middle of our clinical rotations, we both found ourselves pulled from the clinical environment, with a lot of time on our hands. And as dancers do, we both turned to dance in our own ways, and collaboratively, to try to find a way in which to channel some of the feelings and emotions that we were having into a creative performative piece. Maheetha, I don't know if you have anything else to add to that.

Dr. Maheetha Bharadwaj: Yeah. No, I think that sums it up pretty well. Just one thing to add is that both of us remember kind of talking to each other about how, when we came back from COVID, right around June of 2020, our clinical experience had changed dramatically, in that, masks were now mandatory. And I distinctly remember thinking about how it was hard for me to hear this one patient who was this 90-year-old woman, and she was a little bit hard of hearing. I just remember feeling that that encounter was just so much more difficult, and Dipal and I have been talking about encounters like these ever since we came back after the first surge of the COVID pandemic. And I think just all of that also kind of led to this idea for this project.

Dr. Lidia Schapira: And so, the project starts with the two of you who are dancers and very aware of the power of movement, again, just for yourselves, right? And you're now thinking about exploring that as a narrative, or as a story, and you chose cancer as your example. What path led you to cancer?

Dr. Maheetha Bharadwaj: I think cancer is a disease that can affect everyone. And I think, I, personally, have had family members affected by cancer. My mom is a palliative care physician. So, talking about cancer and cancer-related illnesses is not new for me and my family. And on top of that, I think the emotional impact of having such a life-altering illness is something that I think was deeply affected by COVID. We saw that patients weren't coming into the hospital, from a surgical perspective, patients weren't getting the treatment that they needed, and those treatments were being put off. And I think that adds a wealth of anxiety to an already very stressful situation. So, I think for both of us, I know that Dipal is really interested in Oncology at the moment, and me, as a Urologist interested in Urol Onc as well, I think that topic really hit home for both of us. And I think it was a great way to kind of also explore the different types of emotions that someone might feel with a life-altering illness.

Dr. Lidia Schapira: So, did you co-create the scenario, the narrative?

Dr. Maheetha Bharadwaj: Yes, we did.

Dr. Dipal Nagda: Yeah. So, I would agree with everything that Maheetha said. And in addition, I think when we were originally thinking about this, we were thinking about dance in the setting of a patient-doctor relationship. And so, when trying to map out the numerous patient-doctor relationships that exist within the field of Medicine, I think both of us felt that within Oncology, specifically, there is that longitudinal component, and there is that, as Maheetha mentioned, that deeply emotional piece, not only for the patient, but for the physician as well, and caregivers. And while that definitely exists in other fields, I think within Oncology was one that we felt would really come alive in a dance narrative, to both explore that collective journey of the patient, doctor, and caregiver and the individual journey of each of those three individuals.

Dr. Lidia Schapira: Well, I can speak for the readers of Art of Oncology and say that we don't disagree with you, we totally agree that there are very strong bonds and that there's an emotional resonance to being a professional caregiver, and of course, of the patient and family members and family caregivers. So, kudos to you for recognizing that.

How does movement affect communication? And how did the experience of that additional layer of isolation, and perhaps masking, and distancing during COVID affect your entry into this world of Medicine and Cancer Medicine?

Dr. Dipal Nagda: That's a great question. First, I think for my specific clinical rotations, I was in an ambulatory predominant clinical rotation site. And so, a lot of the interactions that I was having in my early clinical years were via virtual patient interviews. And I think that is a place where movement really came out, and I found turning to hand gestures. And I also found that there was a certain distance via zoom that the clinician and the patient were trying to overcome, that isn't totally, from what we found through this piece, able to be overcome through zoom. And I think that was really perspective-changing, in terms of realizing the value of movement, and the value of proximity and the distance, and the ways in which eye level, and body gestures, and physical contact really impact that relationship.

Dr. Lidia Schapira: I read in your narrative and in watching your video, sort of the lament for not having the ability to move and touch. And I'm very happy that you're able to express that, and I hope that now that things are more normal, that you have gone back to feeling that you are freer to connect with patients, and with your colleagues, even, through facial expressions and touch.

And so, tell me a little bit about how you view movement as a potential tool in your therapeutic connections with patients going forward at this early stage of your careers.

Dr. Maheetha Bharadwaj: I think that's a fantastic question, and a question that's really important because, in Medical Education, we often talk about the Art of Medicine, which I think, cannot be emphasized more in this time of wearing masks in hospitals. And just as Dipal had said, I also found myself with patients compensating for wearing masks. Patients often ask, "Are you smiling under that mask? Are you frowning under that mask? I can't tell." And the ways in which we compensate, which is, coming down to the level of the patient. So, sitting down in a chair, or sitting down at the edge of the bed with the patient's permission. You know, in pre-op sometimes, I actually remember distinctly doing this the other day, I was on the colorectal service, and oftentimes, colorectal cancer is diagnosed in one day, in one week, and then you have the surgery two weeks later. And patients are just kind of taken for this whirlwind of emotions while they're contemplating chemotherapy versus surgery, and before and after surgery. And so, almost everything happens so quickly, and in pre-op, during the pre-op time, before they go into the procedure, it's amazing how much as medical students having been working in these environments with masks, we have adapted to be able to recognize when someone is anxious, nervous, crying, not crying, sad, happy.

And I distinctly remember this one patient who was very clearly nervous, and I just took a little bit of time before signing her in, checking her consent forms, I just said, "Hey, how are you? Are you okay?" And the gesture was, going to her bedside, just laying an arm next to her hand, in between her hand and her blanket, and saying, "Are you okay?" And immediately, this patient burst into tears. And she said, "I'm not. I was just diagnosed last week, and next thing you know is, surgery is this week." And it's just because the masks are there, it kind of makes me be more aware of what the patient is feeling because I can't immediately tell. So now I'm thinking about it a lot more and I'm trying to understand it a lot more. I'm paying more attention to it. The ways that we compensate is, trying to bring our physical bodies a little bit closer to the patient in order to compensate for the distance brought into that rapport by the masks. And I think that's like really, really crucial.

Dr. Lidia Schapira: It warms my heart to hear you talk like that because instead of viewing this as an impediment, you work extra hard to try to understand the emotion that your patient is feeling, to connect with her or him in that circumstance, and to show some humanity. And it's amazing how much comfort that can bring to a person who is feeling extremely vulnerable and anxious.

Dr. Maheetha Bharadwaj: Yeah. And I just want to add that, I had been taking care of this patient after her surgery for the entire week. I was rounding on the weekend as well, and we discharged her on a weekend. And as I was giving her discharge papers, she burst into tears again. And she said, "It was lovely seeing your face every day. I look forward to seeing your face every morning. It's nice to have that continuity of care." And I did feel that that pre-op interaction made a difference. It 100% made a difference in how she viewed us, our care, and the hospital system itself.

Dr. Lidia Schapira: So, bottle that feeling, and on a bad day, bring it out, and it'll carry you through some of those more difficult moments in medicine.

So, tell our listeners a little bit how the two of you took your dance to a written narrative.

Dr. Dipal Nagda: Absolutely. So, actually originally, when we came up with this idea of a dance, we did not think about sort of the next steps from that original dance narrative. And when we started to show our piece and our choreography to different physicians, but more importantly, I think the patients and the caregivers who watched our piece, who had so, so much, not only input and feedback for us, but their own reflections, and their own takeaways. And what was incredible, was their own interpretations. That really took us for a surprise is, people find different pieces of the visual arc of our dance piece to relate to, to comment on, to help us improve. And I think Maheetha and I both realized that the benefit of visual arts, specifically, this dance piece, wasn't just from doing the dance itself, but from interacting with the wider community of people who are either watching our piece, or providing feedback. And that sort of bridged, for both of us, this idea of, "Let's try to put all of these things that we're feeling into words, into concrete ways in which we can use visual arts broadly in medical education."

Dr. Lidia Schapira: And what was your relationship to the third and senior author in your paper, Dr. Goyal?

Dr. Maheetha Bharadwaj: Dr. Goyal has been incredibly supportive throughout this entire process. I think early on that Dipal and I were looking for mentors who are familiar with Indian classical dance, familiar with Indian culture, but also had a strong passion for Narrative Medicine, for understanding and improving upon empathetic care for patients. We searched and emailed many, many mentors, all whom gave us valuable feedback, and we've acknowledged in our acknowledgement section, but Dr. Goyal for us, really took our vision under her wing and said, "You know, I think what would be great is, if you could show the beginnings of your narrative, whatever rough choreography you have, to patients." And she helped us connect with some of her own patients, and to be able to give feedback on the narrative, and improve the narrative to be perhaps more all-encapsulating, more relatable to a wider group of individuals, to tweak the narrative itself a little bit. I think she's been incredibly instrumental in helping with that, but also shaping our narrative as well, and kind of pinpointing, "What exactly do we want to convey? And what do we want to tell people? What do we want to tell the world?"

Dr. Lidia Schapira: So, what is the take-home message from your narrative?

Dr. Dipal Nagda: I think for me, beyond the scope of what we've written, this project for me, really served as a reminder of the things that matter to me outside of the clinic, and how all of those passions that we have for, Maheetha and I specifically, dance, really not only provide us a reflective outlet outside of the clinical environment, but I would argue it enhanced our performance as doctors, our relationships with our patients, and I think truly contribute to the clinical environment as well. So, I think that's a personal takeaway for me, and a really important reminder as I think about applying to residency in the next step of my life, but then I think broadly, as we are starting to recover from the COVID 19 pandemic, and we're thinking about how to deliver care in both measurable and non-measurable ways, I think there's parts of the clinical environment that matter so deeply that we don't always think about. And for us, it was really non-verbal communication, and body language, and how to keep that authenticity alive. And if we know, you know, as Medicine turns more and more to virtual care, how do we train the next generation of medical providers to really keep some of those aspects of body language, and eye contact, and non-verbal communication really alive in virtual delivery of care. And so, for me, that was sort of the broader call to action.

Dr. Lidia Schapira: Any plans to do more pieces?

Dr. Maheetha Bharadwaj: Absolutely. I think this is just the beginning, and Dipal and I have already talked about different topics that we could do, particularly because, Bharatanatyam, which is the style of Indian classical dance that we have used to choreograph this narrative, has always been heavily tied to religion. And now in the modern days, we're seeing the secularization of this art form, or in other words, the use of this art form and other Indian classical art forms to depict and portray more secular pieces. Pieces that convey aspects of human lives that aren't necessarily connected to religion. And I think that's incredibly important, and you know, Narrative Medicine is a field of its own that I think is very important in order to, as people said, kind of craft the Art of Medicine within you, and within each clinician. And so, we've definitely talked about, for example, having stories about COVID, potentially having stories about erectile dysfunction - topics that aren't necessarily talked about on a day-to-day basis, but are relatable to each of our fields in different ways. And I think the goal of that is to be able to reach people, to be able to talk about topics that are important to people, but people don't have awareness of. To increase awareness, education, and I think there's many avenues we can take. This is just the beginning.

Dr. Lidia Schapira: Well, it's been a pleasure to work with both of you. I'm very impressed by what you have already accomplished. I love hearing your humanistic visions for what good Medicine is, and your contributions to the Art of Medicine. So, thank you so much.

Until next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, wherever you listen. Be sure to subscribe, so you'll never miss an episode.

JCO’s Cancer Stories: The Art of Oncology is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions.

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Bios

Dr. Dipal Nagda is a medical student at Harvard Medical School

Dr Maheetha Bharadwaj is a urology resident at the University of Washington. In this episode we will be discussing their Art of Oncology article

Video Performance: https://youtu.be/Nru_nWiiDXk

Listen to ASCO’s Journal of Clinical Oncology essay, “The Will to Go On,” by Dr. Sumit Shah, Clinical Assistant Professor of Medicine and Oncology and Medical Director of Digital Health at Stanford University School of Medicine. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Dr. Shah. Dr. Shah explores a patient’s will to live and recounts witnessing a powerful bond between a patient and her spouse.

TRANSCRIPT

Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO podcasts, which offer a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org.

I'm your host, Lidia Shapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford. With me today is Dr. Sumit Shaw, Clinical Assistant Professor of Medicine and Oncology and Medical Director of Digital Health at Stanford University School of Medicine. We'll be discussing his Art of Oncology article, ‘The Will to Go On.’

Full disclosures for our guests will be linked in the transcript and can be found on the article’s publication page.

Sumit, welcome to our podcast!

Sumit Shaw: Thank you, Lidia! It's a pleasure to be here. Thank you so much for having me.

Lidia Schapira: It is our pleasure. So, before we start to discuss ‘The Will to Go On’, I'd love to ask you a general question about what you read and what you're currently reading now, and what you can perhaps recommend to our listeners.

Sumit Shaw: Yeah, absolutely, Lidia. So, when I'm not reading randomized clinical trials in oncology, I try my best to read for enjoyment. I typically right before going to bed. I tend to gravitate towards work outside of medicine. Currently, I'm reading All the Light We Cannot See by Anthony Doerr, which is a World War 2 story told through the eyes of a blind French girl and a German boy in France and how their parallel paths eventually intersect.

Doerr writes so beautifully and uses language to create these very vivid scenes. It's really a remarkable masterpiece that's taken him over 10 years to write. So, it’s quite extraordinary and highly recommended to our listeners and readers.

Lidia Schapira: Thank you! I love that book. I share your enthusiasm. Let's move now to your story, ‘The Will to Go On’. You describe an encounter with patient Diane and her husband during your 2-weeks stint as the attending physician in an academic oncology inpatient service.

So, let's start and unpack that for a moment. How do you envision that role in terms of your connection to patients? I've heard many colleagues who say that it's very difficult because they don't know these patients and they haven't cared for them. How can you introduce some humanism into that role?

Sumit Shaw: Yeah, absolutely, Lydia. So, we have several services that deal with just Oncology at Stanford. My favorite service is the teaching service where we're working with residents and interns and fellows, strictly with patients who have cancer.

It is a very emotionally charging month for our trainees. And a lot of my responsibility, I think, is actually keeping that dynamic and the culture of the team to be as positive as possible.

So, I have certainly a responsibility to my patients, which I think is really important, but really also to the trainees. And so, I think it's incredibly important that we model good behavior.

So, that's what I see as a large part of my job is really having these very difficult conversations with patients for the most part that we've never met because they're often treated by their own primary oncologist who's someone different than I, and oftentimes even more challenging given that they're typically coming in with a disease that we may not be even familiar with, given that we mostly subspecialize at Stanford as well.

So, that can be very difficult to meet a patient that you don't know as much about their disease and, too,  is that you don't know much about them as a person. And then to have to be the liaison between a patient's primary oncologist and what you think is best for them there in the hospital. But I do think that sitting by the bedside, maintaining eye contact with our patients, and putting your arm on them is so important, not only for the patient to feel that there's still a connection with not just you but their outpatient oncologist, but also for the house staff to see that, that there's so much about humanism in oncology that makes it such a special field.

Lidia Schapira: So, your patient Diane has metastatic lung cancer, and you are a GU medical oncologist, so that is a clear example of what you just told us. And you tell us that she's now admitted to the hospital having suffered many complications of that same immunotherapy that you say she had hoped would be her savior. Tell us a little bit about how you interpret your role as a teaching attending, and also, as a communicator with families when you see patients who are coming in, with toxicities from treatments and treatments that may end up being futile.

Sumit Shaw: I think one of the more challenging aspects of our jobs as oncologists is actually seeing patients that have complications from their own therapies as opposed to sick coming from cancer itself.

I think that it adds a layer of responsibility, and almost sometimes guilt that you may have brought this on. Obviously, these are not our intentions but we have to be so humble that our therapies can be incredibly toxic.

And we often talk about these drugs like immunotherapies, which are the brand-new shiny object in oncology, where everyone is talking about it because it's on every single commercial out there so patients really want it.

But we sometimes mitigate some of these symptoms and the side effects that can really affect our patients. So, it's interesting in the outpatient world, we talked about these drugs as potentially life-prolonging or potentially even life-saving. But we see the complications, you know, very closely in the inpatient setting.

So, we have to discuss and kind of realign expectations, and make sure that our patients are now aware that these drugs do have toxicities. But hopefully, we can try to overcome these toxicities and get you back to where you were before you came into the hospital.

Lidia Schapira: So, now let's go and meet Jim and Diane. Diane is your patient but Jim is an important character in your story. They've been married for over 50 years, and Diane is the one who is hospitalized with all the complications of treatment. And you talk about entering the room and you use the first person.

So, were you alone to meet, or did you have an entourage? I ask this because I've found and I think it's important to also address the difference between walking in alone or walking in as a team leader as you say, understanding that part of your role is to model behavior for your trainees.

Sumit Shaw: I actually did have an entourage with me. I feel that patients and families really appreciate that. I try to walk in last, typically when I go into a room, largely to empower the trainees to serve as the primary physicians.

And when things get a little bit more challenging in terms of discussions that require a certain level of understanding of oncology, I tend to step into that situation. But I won't forget standing in the corner of Diane's room, seeing Jim wheeled into the room and just seeing how these two individuals just looked at each other so intently, and you can just see visibly how much they missed each other based on the expression of their faces, and that something will always stay with me. But it was quite an incredible moment.

Lidia Schapira: So, you call a family meeting because you think that Diane's prognosis is very poor. And you want to have goals of care discussion. And so, by what you call a tiny hospital miracle in the pandemic, Jim, who is also a patient in the hospital waiting for cardiac devices wheeled in accompanied by his son, Diane is there with her daughter who's a nurse at the bedside. And you have a family meeting, which is actually the celebration of this reunion and a clear demonstration of their love. Tell us a little bit now looking back, what actually happened in that meeting?

Sumit Shaw: Yeah, so these meetings can be very difficult to navigate largely because traditionally, we're taught to ask these very open-ended questions to respect patient autonomy, and have patients make their own decisions about this very sacred question about what would you want to have done towards the end of life. These can be very, very difficult conversations to have, obviously.

But I also feel that this puts an undue burden on a lot of patients who may not have as much experience as we do in understanding the consequences of these decisions. So, for instance, especially in this DNR discussion, I tend to have less of an open-ended conversation with our patients.

So, I tend to be very direct and offer my recommendation, and then hope that the family would also be in agreement. And certainly, we put those questions out there to them and 9 times out of 10, they are in agreement. I think it was also very helpful that their daughter, Susan, was also in healthcare as a nurse, so she was able to understand some of the implications of this.

But these conversations can be very difficult in general but I do sense many times, I actually get a lot of comfort after these conversations because they often go relatively well and you can just see a sense of relief that's taken off the shoulders of our patients, that is actually very comforting to see.

Lidia Schapira: So, what makes this situation so special? The reason probably, and I'm going to ask you this question in a few minutes, that led you to want to write about it and share this experience with your colleagues is the dynamic between the two partners, right? And it looks like Jim perhaps had been the decision maker and Jim's input here was really important. And Jim wanted a quick resolution to this question. Tell us a little bit about how you felt watching that happen right in front of you.

Sumit Shaw: It was quite extraordinary in a lot of ways because you could see that Diane was very much dependent on Jim. Prior to her becoming sick, she was a very spry and spunky elderly woman.

But you could see that she really deferred to Jim in a lot of ways and her children to explain to her what they thought was best for her. And so, when Jim was certain that they needed to make a decision right then, I actually was taken aback because I thought that it would take much longer given Diane's ambivalence about the situation in terms of, she was just really confused. She didn't know whether to be DNR denied. She didn't know whether to pursue comfort measures to keep on going. And I think Jim's reassurance really helped her.

Lidia Schapira: One of the things that made this meeting so special was that it appears that it was Jim's presence and his resolve to reach a resolution that moved the meeting along, and this is something that seems to have struck you, and you use the word in your essay that there was comfort in that. Can you tell our listeners a little bit more about how Jim sort of took the role to advance the conversation?

Sumit Shaw: Yes, it was very clear that Diane was not going to make a decision without Jim. Not only did Diane's daughter, Susan, mention this, but Diane herself said that she needed to have Jim in the room if she were going to make a decision about both the DNR status and about overall goals of care in terms of moving forward with comfort measures.

So, when Jim came into the room, it was very clear that she looked right to him whenever these questions were asked to her about what she should do next. You could just see that these two people knew each other so incredibly well and I just felt that she almost felt that Jim knew her better than she knew herself.

So, while we certainly want to respect patient autonomy, and we always wanted this to be Diane's decision, it was very clear that she was going to defer to Jim. It was beautiful in the sense that Jim was so resolute because he made a very clear decision that he thought would be best for her. And she agreed. And after that, there was no going back and revisiting this question.

It seemed that there was a burden that was lifted off her shoulders and she was able to even breathe a little bit more comfortably after hearing from him, and that was a really beautiful moment to witness.

Lidia Schapira: You have this beautiful phrase there when you say, ‘Husband and wife in matching hospital gowns embraced for the first time in weeks.’ There's such warmth and there's so much love that you can even sense in the dialogue. So, you leave the room, and then what happens?

Sumit Shaw: So, we left the room, and I remember the entire team was talking about this beautiful interaction that we saw between two people. And then, the next morning, I come into the resident's room, and the resident looks at me incredibly forlornly and says, “Dr. Shaw, Jim died last evening.”

I just couldn't believe it. I was shocked. I was in disbelief. We had just had this beautiful meeting and orchestration of getting two people together and witnessing it was almost like a beautiful ceremony in some senses in this reunification. And now to hear that Jim died the day before receiving a life-saving cardiac device was so troubling.

I think it raised a number of questions and emotions in my head. One was shocking disbelief as I discussed but two was gratitude that we were able to arrange for Jim and Diane to have that final moment together. Then three, I was just so worried about Diane and how she would react to this news. So, that's why I wanted to rush to her bedside as soon as possible to see how she was doing.

Lidia Schapira: And so you did! Did you go alone? Did you go with the team?

Sumit Shaw: At the time, I actually went alone, because the team was still rounding with other patients and I just felt an obligation to see her right away. So, I rushed to the bedside and it was very clear that she had already heard the news from her children. She was absolutely stunned and she was in a delirious state.

She wasn't able to verbalize and she was just faintly moaning and staring at the wall in front of her. It was a very difficult sight to see. And for me at that moment, I wanted to offer my condolences, of course, but I also think that there's a lot of importance in allowing families to have time and space to grieve. So, I tried to make myself a bystander as much as possible, not make myself the center of this conversation so I allowed them time to process.

Lidia Schapira: Witnessing is an important part of accompanying patients, right? As we're there, we're just we're present, we're maybe silent, we're just there expressing our support with compassion, and then we get to the end of this story, tell us what happened to Diane, and how that made you feel?

Sumit Shaw: So, after Diane received this news, she was obviously in shock. She continued to have very labored breathing, but we just discussed her prognosis the day before. And we had discussed that her timeline would likely be measured in weeks or months, potentially based on how she was looking.

And as oncologists, we're conditioned to know when death is imminent, typically within hours or days, and she did not have that look, which is why it truly shocked me just to learn hours later, while we are on rounds that a nurse paged us to tell us that Diane had just died.

And again, the same feelings of shock and disbelief, like, how could this be possible just hours after her husband passed? I think, again, many questions surfaced. The first question as a physician and as a scientist is to think about, ‘Well, was this brought on by a physiologic response? Could the stress of the news precipitate a hypertensive crisis, which led to flash pulmonary edema, and then hypoxia and arrhythmia, right?’

We tend to try to create a story in our minds about how could this have happened and rationalize this. Could she have had Takotsubo cardiomyopathy - disease of the broken heart - or was there something that's within her that told her that now is a good time for her to pass? That's a question that I really struggled with for some time.

Lidia Schapira: How did you talk about it with the team?

Sumit Shaw: Yeah, I think one of the fundamental struggles in our profession is balancing the ego that's required to take responsibility for another person's life, with the humility to acknowledge that our therapies and our understanding of the human condition is very limited.

So, I think, when I was talking to the team, I felt that in this situation, I felt that no matter what we could have done medically for Diane in this hospitalization, either to keep her heart pumping or to keep on perfusing her organs, she was going to declare herself and that she decided that this is her time.

So, this is obviously very difficult for the house staff and for myself to really accept. You feel almost a sense of responsibility, but also you saw two beautiful patients getting together, and then 8 hours later, neither of them is around. It was truly a heartbreaking scene. But I asked that, you know, the House staff just to be kind to themselves and kind to each other. And also, just try to appreciate the beauty in what we saw as well.

Lidia Schapira: You write in your essay that this scene put into question for you, perhaps that the will to live or deciding to let go is more powerful than physiology that there's something else. In reflecting upon what you saw and what you witnessed there, has that changed a little bit how you approach the time that somebody lets go or how much power the mind has over the body's ability to be in this world?

Sumit Shaw: Yeah, I feel that it's really humbled me, I just feel that there are existential forces, beyond our therapies that really determine the longevity of life, and that it's made me realize that our therapies are very limited in their utility. And if a patient decides that they no longer want to keep going, and they have come to peace with the fact that this is the end of their life, they will make this decision.

We've all seen this as well in our own practices. The times that you come by the bedside of a dying patient and just hours after they meet with you and their family, and you let them know that it's okay, you see that they pass.

So, it's an extraordinary thing to witness and certainly, a privilege, and this concept of a will to live is a fascinating one that I read a lot about as well that really inspired me to look deeper into this subject.

Lidia Schapira: Years ago, there was a beautiful essay published in the Art of Oncology by Steve Greenberg. It talks about a physician who made a house call to a patient to basically allow her to die naturally. And he sat at her bedside, and whatever happened in that room led to her peaceful passing.

So, I think a lot of very thoughtful, humanistic physicians in our specialty have witnessed these moments, and they've been transformative, really.

So, my last question to you is, how did this encounter and this experience change you? And if it did, what do you now bring to the bedside or the next consultation that perhaps wasn't quite there before?

Sumit Shaw: So, this really inspired me to dive a little deeper into this concept of a will to live and really, truly try to understand that. There's actually a psychiatrist that I read about, that I believe, that you actually pointed to me towards is a psychiatrist named Harvey Chochinov..

He actually wrote about this concept of a will to live back in the late 90s and early 2000s. And his research was really at the crux of the death, dignity, and physician aid in dying, conversations that were being had in Oregon at the time. And Chochinov was able to identify certain positive factors that reinforce a will to live, such as a sense of well-being, low anxiety levels, a strong commitment to religion, or living with a spouse.

But unsurprisingly, he also found factors that erode the will to live. These include shortness of breath, and physical suffering, such as pain. But there are also some existential factors that also lead to an erosion of the will to live, including a loss of dignity, or a sense of being a burden to others, which also was a significant risk factor.

So, when I'm putting this together, for me, I tend to think about, are there things that we can mitigate, such as physical pain and shortness of breath to potentially improve a patient's will to live, or are these more existential and are those things that I cannot control, and maybe I should just be more okay with that as well. And I feel if the patient has come to a certain conclusion, I feel that I feel more comfortable now not trying to convince them otherwise and my job is to reassure them and let them know that we're going to care for them and respect their decision. So, I think that that's largely how this scene has really changed the way that I practice now.

Lidia Schapira: My really final question is what made you want to write about this, many people write to process experiences, but then to share it with colleagues and with people that you've never met.

Sumit Shaw: I actually remember going home that evening, after hearing about  both Jim and Diane. I went home to my three boys, and my wife, we were at the dinner table. And when my wife asked me, how was your day, and I probably responded with a typical, it was fine, pass the potatoes kind of comment.

And then, I said, ‘Wait, no, let me reflect. Actually, my day was not fine. I actually saw one of the most extraordinary scenes that I've ever witnessed in medicine so far.’ So, when I told this to my wife, who's also a physician, she's the one that actually encouraged me to write about it, largely for two reasons.

One is to process, as you mentioned, it was very clear that this had a huge impact on me, but two is to remember this as a story. At the end of the day, our lives and our professions are a collection of stories and this is one of the more remarkable patient stories I've ever been a part of. So, that was a big part of it.

And then, the question about publishing, I think is an interesting one, especially in this day and age, because you can either publish in a forum like this, or you could also just tweet about it and get out to thousands of people within seconds at the click of a button. But I think that storytelling is so fundamental to the medical profession in a lot of ways, in the sense that we as doctors are really storytellers. We hear and tell stories of people afflicted with illness and we share this with others to teach and learn.

This goes back to our days in training when we were sitting in the resident room and the chief resident ask you to share a case. Essentially, we're telling a well-structured story of a person who fell sick, and using that experience to teach others.

So, I think by publishing, I'm hoping to share with the community of like-minded individuals to create a culture about sharing about medicine and to relate, and hopefully have people who can relate to my piece and reflect on it and perhaps encourage them to share their own stories with others, too.

Lidia Schapira: Well, thank you so much, Sumit! This has been a lovely conversation.

So, until next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review wherever you listen. Be sure to subscribe so you never miss an episode.

JCO’s Cancer Stories: The Art of Oncology is just one of ASCO’s many podcasts. You can find all of the shows at podcasts.asco.org.

The purpose of this podcast is to educate and inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Listen to ASCO’s Journal of Clinical Oncology essay “The Side Effects of Caring,” by Dr. Aarti Kamat, a pediatric hematology/ oncology fellow at the University of Michigan. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Dr. Kamat, where they discuss coping with Secondary Traumatic Stress (STS) after Dr. Kamat has a triggering experience with a teenage patient.

TRANSCRIPT

The Side Effects of Caring: Dealing with Secondary Traumatic Stress in Oncology

Narrator: The Side Effects of Caring, by Aarti Kamat, MD (10.1200/ JCO.22.00736)

“I don’t want to die in the hospital.” I could hear the young teenager crying in the background as I told her mother on the phone that she should come in to the emergency department. She had recently been diagnosed with a relapse of her leukemia and subsequently developed a systemic fungal infection. She now had a new fever that needed to be evaluated. She had decided that her goal was to pursue all possible treatments and interventions, so although I knew the thought of going to the hospital was distressing to her, I felt that this was the safest course of action and in accordance with her overall goals of care. I gently expressed to both my patient and her mother that I did not think this would be a long admission or result in her death. I could hear the mother reiterating my comment to her daughter who continued to sob and repeat that phrase. “I don’t want to die in the hospital.”

Eventually, my patient calmed down. I convinced her that I had no intention of sending her to the hospital to die, and she was successfully discharged home after a short admission. Despite the objectively positive medical outcome, I would still hear the patient crying in my head at random moments. Whether I was lying in bed with sleep eluding me, walking outside with my dog, or caring for other patients, I kept hearing the phantom voice repeating the phrase, “I don’t want to die in the hospital.” I felt strained and stressed and was sleep-deprived while trying, unsuccessfully, to ignore the crying voice that was plaguing me.

As a pediatric hematology/oncology fellow, I have seen and dealt with my share of emotional situations, and this was not my first or even most difficult encounter. I do not know why this particular patient’s distress triggered such an emotional response within me. I empathized with this ill and terrified teenager and felt the tension between trying to reassure her that she would be okay and advocating for a hospitalization. I know that I delivered on my promise to my patient and her mother and that the admission was short and uneventful. I had not ignored her wishes or her cries for help, and I had confirmed that she wanted to continue with treatment of both her leukemia and fungal disease. However, why did I continue to hear her voice in my head?

This pattern continued for days, even as I tried distracting myself with work, a tactic that usually works for me when dealing with unwanted emotions. Eventually, I realized this strategy was not working, and I knew this could not continue. Although I do not typically feel comfortable sharing my feelings, especially negative emotions, I eventually confided in a trusted mentor who is a pediatric intensive care unit attending with an interest in physician wellness, and I hoped she would be able to lend some much-needed advice. She immediately recognized that I was experiencing secondary traumatic stress (STS) and sent me online resources and podcasts to learn more about what I was going through. She encouraged me to speak with someone I trusted in my program about my experience and so I talked with an attending who was also my mentor. She listened attentively and shared her own similar stories and experiences. Being able to have my feelings validated and acknowledged in this way by people I trusted helped me to feel less hopeless and alone.

STS is being increasingly recognized in health care workers, especially in the wake of the COVID-19 pandemic. Also known as vicarious trauma, STS is related to post-traumatic stress disorder and in fact has overlapping symptoms of hypervigilance, avoidance, re-experiencing, mood disturbances, difficulty sleeping, and difficulty concentrating.

Although STS can contribute to burn out, it is a distinct problem as it occurs when a person hears and responds to the trauma of another (secondary trauma) instead of their own personal trauma. STS can be triggered by hearing about the traumatic experience of a patient. In my case, hearing my patient’s own duress triggered personal feelings of stress. Risk factors for STS include having a high level of empathy, the dose of exposure, isolation, less experience, younger age, and sex (more common in females). Importantly, even single events can trigger STS.

The most important step in dealing with STS is recognizing the symptoms and knowing when to seek help. I was lucky that confiding in mentors and discussing my feelings with them helped my emotional healing, but it is not uncommon to need professional mental health help. The National Child Traumatic Stress Network posted a fact sheet to allow physicians to recognize STS in providers caring for children with trauma. Similarly, the American Academy of Pediatrics (AAP) published a health and wellness article in the AAP News discussing tips for providers. There are also now a variety of podcasts discussing the issue for those who wish to learn more.

I no longer hear that crying voice, but I know that I am certainly at risk for redeveloping STS. This experience, while distressing, did provide a valuable lesson about the importance of mentorship and communication. The act of sharing what I was going through and being lucky enough to have two trusted mentors not only recognize and validate my emotions but also guide me and remain available when I needed encouragement was enormously valuable. As someone who does not like to express any form of perceived vulnerability, something I imagine is common in many physicians; it felt unexpectedly

freeing to unburden myself. Resilience and tenacity have historically been touted as necessary personality traits in our profession, but vulnerability and sensitivity are just as important. Although these traits are not mutually exclusive, this experience has helped me embrace my vulnerable side. Although the culture of medicine does not always recognize the need for vulnerability, in my case, acknowledging these feelings has been emotionally healing and has deepened my compassion for my patients. I am so grateful for having received support from mentors who understand the need for balancing hard work and wellness, something I hope to do for others as I advance my career.

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology brought to you by ASCO podcasts, which offers a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. With me today is Dr. Aarti Kamat, Pediatric Oncology Fellow at CS Mott Children's Hospital at the University of Michigan. We will be discussing her Art of Oncology article, 'The Side Effects of Caring'.

At the time of this recording, our guest has no disclosures.

Aarti, welcome to our podcast.

Dr. Aarti Kamat: Thank you so much for having me.

Dr. Lidia Schapira: It's a pleasure. Tell us a little bit about your fellowship experience and storytelling. Do you read stories? Do you tell stories? How do you think about storytelling?

Dr. Aarti Kamat: I've always really loved storytelling. When I was a little girl, I thought I was going to be a writer when I grew up. So it's always just kind of been a part of me. I do love reading. My friends and I, to stay close during the pandemic, have actually done virtual book clubs where we read out loud to each other. So that's been a good way to stay connected with people and also to read and hear some good stories. So that's just always been a part of me and helps me relax.

Dr. Lidia Schapira: Can you share with our listeners some of the books that you've read recently that you would recommend to others?

Dr. Aarti Kamat: Sure. I've been on a little bit of a Jane Austen kick recently. She's one of my favorites. So I always turn to her when I need something fun and something for my downtime. So we just finished Pride and Prejudice and just are starting Emma now.

Dr. Lidia Schapira: Do you have a book club with some of your fellow fellows or some of your coworkers?

Dr. Aarti Kamat: Not with my fellows, no. I do have one with my co-residents, so people I've worked with in the past.

Dr. Lidia Schapira: So through this love of reading and stories, you also talk about a love of writing. Has writing been a part of your general sort of self-care portfolio, so to speak, as you tackle these very difficult years of training?

Dr. Aarti Kamat: It definitely has both through journaling and through just writing silly fiction stories. It definitely helps me. If I need to get out my emotions, I can write things about myself. Otherwise, I like to write stories to entertain other people.

Dr. Lidia Schapira: So let's talk a little bit about the essay that you sent and we've published in Journal of Clinical Oncology, which uses a clinical vignette as a way of introducing a very difficult topic, one that clearly shows in your narrative that you're very self-aware, but also where you share with the readers, a very particular vulnerability and a very difficult episode. Can you tell our listeners a little bit about how you live through these moments and how you are dealing with the trauma?

Dr. Aarti Kamat: Sure. It's definitely hard to live with moments like this, particularly in a field like Ped Onc. I'm very lucky to have a group of supporters who are both willing and able to listen to me when I am not able to handle something myself, both family and friends and coworkers. I have very experienced mentors who have gone through similar feelings and difficult situations, were always there to guide me. So I've been very lucky in that sense.

Dr. Lidia Schapira: Let's talk a little bit about the role of mentors in fellowship training. You talk about a patient triggering some trauma in yourself that you couldn't get away from that you realized was really interfering with your ability to function, if I understood your essay correctly. And you immediately found two mentors, who took you under their wing, and helped you. Tell us a little bit about this, untangle the process for us, recognizing the traumas, knowing where to turn for help, and then accepting the help.

Dr. Aarti Kamat: It took me a little bit to fully recognize and give in to the fact that I needed help and that I was struggling, I knew, obviously, that I wasn't feeling myself and was having these symptoms that were unpleasant. But I think, like a lot of us do, just try to initially ignore them. And that, obviously, was not working.

The one mentor, who I have always turned to who I know and has helped me through things like this in the past, I actually connected with during residency at the start of the pandemic. My program was very supportive and set up support groups, basically, for all of the residents to have one attending oversee. And she was the one who was assigned to me, and we just clicked and have stayed connected. And she's really helped guide me through fellowship and through the tough situations I've been having. So I knew I could count on her and turn to her for advice.

And then in my own fellowship, I'm very close with my research mentor, and she, similarly, has guided me through fellowship. So I knew that I could already inherently trust these people. So it was very easy to turn to them once I decided that that was something I needed to do.

Dr. Lidia Schapira: In your essay, you reflect a little on the culture of medicine. And, you know, you and I are not of the same generation. So I certainly remember during my training that you had to have sort of a hearty disposition, and it was all about tenacity and resilience and focus. And you talk a little bit in your essay about something that I think is so important for our readers to reflect on and hear, and that is that vulnerability and sensibility are just as important a trait of a good oncologist, pediatric, or adult. Tell us a little bit about how you discovered that.

Dr. Aarti Kamat: I think it really, I discovered it since being tenacious and closed off obviously wasn't working for me. I think that culture is certainly still there, and that's what I was operating under that I needed to be strong and emotionless and not let these things get to me. Clearly that did not work and was having a negative impact on my training. So it was definitely difficult. But I realized opening up and having that vulnerable and sensitive side was important. And we deal with difficult things, our patients have a lot of difficult emotions. So kind of being aware of our own emotions can help us connect with our patients as well.

Dr. Lidia Schapira: Tell me a little bit more about what you mean by embracing your vulnerable side.

Dr. Aarti Kamat: I think just allowing myself to feel that vulnerability and not be ashamed or feel like there's something wrong with me or that I'm not strong enough, but rather that this is just an inherent part of me and everyone and something that I need to feel.

Dr. Lidia Schapira: And let's take it a step further. And let me just say that I admire your courage for sharing your vulnerability with the community of oncology readers of JCO. What made you send this essay to us? And what drove you to put this issue of traumatic stress to the front and forward for our community of readers?

Dr. Aarti Kamat: Sure. So I had actually initially just written this as a reflection piece for myself, kind of like I do, like I mentioned earlier, I do enjoy journaling and writing when I need to process something. So it was just something I had written for myself to try and just another step in the healing process. And I did share it with my mentors who then encouraged me to reach out and possibly get this published, since it is something that affects not only me. It could potentially be helpful for others.

Dr. Lidia Schapira: So Aarti, let me ask you a relatively trick question here, and that is, if you were reading this as a Program Director for a Pediatric Oncology Fellowship Program, what would you do? What is the message that you would take home, and what changes would you make in your own program?

Dr. Aarti Kamat: I think I would reflect on my program and see, are there supports in place for my trainees who could potentially be going through a similar experience? Is there anything that we can be doing more as a program to support trainees or not even just trainees, but anyone working in the field and really just reflect and evaluate on that?

Dr. Lidia Schapira: Let's take that and think about that together a little bit more. What kind of resources or sort of wellness interventions do you think help? What have you heard from others and what has been successful for you and your fellow fellows?

Dr. Aarti Kamat: So I think trying to destigmatize needing to reach out for help. So having whether that's a therapist, psychologist, psychiatrist. We do have a very good program where I am where you can just reach out, and the program helps set you up with a therapist, at least temporarily, to help work through any potential feelings you're having. They really encourage us to make time for that. I think just making it easy to find people, like a mentor or an attending to reach out to is also really important, if, you know, the professional route is not the route you want to take. So just promoting a culture of openness with people who are guiding you, not only in your career, but also in your emotional development.

Dr. Lidia Schapira: So yes, I fully agree with you that creating a compassionate culture and compassion begins with self. So helping people to understand that as well is incredibly important. And one of the things I think that probably keeps you going back to work and me going back to work is that we also find the work we do very meaningful. Can you talk a little bit about the joys of practice for you?

Dr. Aarti Kamat: Sure. I mean, I love my patients. I love interacting with them and getting to know each of their unique personalities and their likes and dislikes and getting to know their whole families. And really developing that relationship is very important to me and very special to me. And it's a very, I think, privileged relationship.

Dr. Lidia Schapira: So what are some of the lighter moments at work both in conversation with some of your patients or with your coworkers, or even in your fictionalized writing, that help you feel that your emotional reserve tank is full?

Dr. Aarti Kamat: So I love just having fun with my patients. I always make sure that at our visits, we're talking about not only the medical things, but any fun things they've done in their life, or what they've done since the last time I've seen them. I make sure I know their favorite either princess or superhero, whichever they prefer. And I like to include that when I'm talking about them with other people. The same thing with my coworkers. We're all very close. And we love laughing and joking with each other. And we really love ordering cookies and having those in clinic. So that helps the day get by as well.

Dr. Lidia Schapira: And I'm wondering, do you ever read stories to your patients, to your little ones?

Dr. Aarti Kamat: I haven't. But now I think I should start.

Dr. Lidia Schapira: I think you should too. I have found it so interesting with so many of my patients, adult patients over time. I know who the readers are, I know what they like to read. And often that is the best icebreaker and the best way to connect during a visit even if the news we then have to tackle is not the brightest. So maybe you can try that and then write to us and tell us how it worked.

Dr. Aarti Kamat: I will definitely try that. I love that.

Dr. Lidia Schapira: All right. Well, it's been lovely talking with you, Aarti. Again, I thank you for sharing your vulnerability and helping us really understand how important this topic of secondary traumatic stress is for trainees. And I hope that our listeners and readers will take some good ideas home to make their programs even stronger.

Dr. Aarti Kamat: Thank you.

Dr. Lidia Schapira: Until next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review wherever you listen. Be sure to subscribe so you never miss an episode. JCO Cancer Stories: The Art of Oncology is just one of ASCO’s many podcasts. You can find all of the shows at podcast.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Like, share, and subscribe so you never miss an episode and leave a rating or review. 

Guest Bio

Dr. Aarti Kamat is a pediatric hematology fellow at CS Mott Children’s Hospital/University of Michigan.

Listen to ASCO’s Journal of Clinical Oncology essay, “Three Days was Enough” by Dr. Teresa Thomas, Associate Professor at the University of Pittsburgh School of Nursing. The essay is followed by an interview with Thomas and host Dr. Lidia Schapira. Having medically adjacent experience, Thomas shares her personal story of helping her family come to terms with hospice care for her father.

TRANSCRIPT

Narrator: Three Days Was Enough, by Teresa Hagan Thomas, PhD, BA, RN 

My dad agreed to receive hospice on a technicality. It happened after weeks of trying to get him home oxygen. My brother drove him to the oncologist’s office, and I helped him get into the wheelchair. He did not complain, but just asked me to hold his coffee mug, smiling because I snuck him a fresh donut. Three months before, dad was well-maintained on treatment for a neuroendocrine tumor. It was not until two separate, non–cancer-related hospital admissions kept him off treatment that the cancer saw a chance to hijack his body, take over his organs, and lead to a precipitous decline.

As we waited for the oncologist, I told dad not to downplay his shortness of breath. But he wanted to look good enough to get chemotherapy the following week, the only way he saw to resolve his lymphedema and keep the cancer at bay. He failed the oxygen saturation test by one point, and having not qualified for home oxygen, we drove home disappointed without further recommendations or support. The sense of defeat was maddening. We were batting down an escalating onslaught of health issues at home only to be turned away from the professional caregivers when we most needed their advocacy. I was enraged that all the work arranging the appointment led to nothing and disappointed for my dad as he sat consumed in his pain and shortness of breath. His oncology team was supportive when his health was stable but did not have the skills or systems to proactively help us manage the dying process. I channeled my disillusionment with the health care system by calling in favors for a palliative care consult, both aware of my privilege but also stopping at nothing to give relief to my dad.

A few days later, my dad and mom were willing to accept hospice care for the singular purpose of getting oxygen. I was sitting next to my dad in his home office, amix of posters from his travels abroad and family wedding photos surrounding us. When he asked for my thoughts about hospice, I carefully laid out what I saw as the benefits—namely, he would immediately qualify for home oxygen and get a level of care beyond what his oncologist could offer.

But as I tried to give him all the words I knew from my professional life, I just saw the man who raised me staring back at me hoping for a way out of the painful, weak state he was in. He was not giving up on treatment or controlling the cancer. I was not going to change that. I wanted that, too. Now his eyes were sunken, all the fat gone from his face, and his entire body working to breathe. His belly was large, the tumor taking over, and his legs swollen with lymphedema. I felt the boniness of his shoulders and back. There was no coming back from this. I was in disbelief that he was dying so quickly, selfishly wanting him to stay but also knowing he deserved a pain free death.

He agreed to enroll in hospice, with the plan that he would unenroll and try to get more treatment. I wanted to be right there with him, treating this as a temporary detour and not the end. I looked him directly in the eyes, searching to see any recognition that he would never get treatment again and that this was it. Not seeing anything, I tried to open the door to discussing death, reminding him how tenaciously he had fought to keep this cancer controlled and acknowledging the need to focus on his quality of life. I desperately wanted to have an open discussion about dying, but his stoic Irish mentality kept us from having that heart-to-heart.

Initially, I was disappointed that my attempt had failed, but now I recognize that achieving a good death did not depend on verbalizing that he was dying. He was living and dying, hoping and accepting, trusting and doing his own thing. Our plan was logical and irrational. I remember thinking people in these situations needed to face reality. Here with my father, being so direct would be counterproductive. He very likely recognized what was likely to unfold, and hospice allowed him the unstated permission to let go. I called his oncologist, and together dad and I asked to enroll in hospice.

The oncologist responded, “We are so glad you finally made this decision.”

By that night, the hospice nurse was sitting at my parent’s kitchen table preparing us. Dad was sitting in the front room, finally relaxing in the plush leather lift chair we impulsively bought for him, with the oxygen machine humming at this side. We grilled the hospice nurse with questions. She kept saying how fast patients with cancer seem to go downhill. She told us without telling us. She gave us breadcrumbs, just enough information to get us through each step of the dying process, giving morphine, getting a hospital bed, giving Ativan, and finally seeing him pass.

Three days after enrolling in hospice, he died at home withmany of our family at his side. Just like the hospice nurse said he would, he died on his own terms: after he had said goodbye to all his siblings, after the infant he and my mom were fostering was placed with his adoptive parents, and after all five of his children were at home with him. He died with dignity, mentally capable until the last hours, and surrounded by love. His exact terms.

I am not sure what conversations were had between my dad, my mom, and his oncology team in the weeks before he died. I do not know if they openly discussed the need for palliative care or hospice. Dad’s providers might have, and my parents willfully or naively missed the clues. I can imagine for the oncology team, discussing hospice meant admitting that the treatment plan had not worked as intended and that they could not meet my dad’s needs. I know for my parents, discussing hospice would give air to the idea of death and therefore was not only avoided but actively discounted. As a researcher focused on palliative care, these dynamics were not new to me. I recognize how the stigma surrounding hospice and palliative care prevents earlier provision of quality end-of-life care. That knowledge did not prepare me when it was my dad dying. Awakening to the reality of dad dying was incredibly difficult when every hour we were managing his frenzy of health issues. 

Three days is used as an indicator of poor end-of-life care since people are eligible for hospice when they have a 6-month life expectancy.1 My dad did not openly discuss hospice until days before he died, but the number of days did not matter for my dad. What he was now able to do—because of hospice—during those days mattered more. During his last 3 days, dad meticulously rewrote his will, had it notarized by a hospice social worker, visited with his siblings, and made amends for long-past transgressions, enjoyed his favorite foods—fresh Boston cream donuts and black French press coffee—and spent quality one-on-one time with each of his kids and most of his grandkids. Although death was never directly discussed, neither was the idea of unenrolling in hospice. Hospice was what was allowing him to maximize the mental and physical capacity he had left.

Those 3 days took my family from being stressed to our limit trying to manage dad’s disintegrating health to feeling like we were being led by competent, caring hospice nurses who picked up our phone calls and responded within minutes. Now a year since he passed, I have a newfound appreciation for the complexity of discussing death with families and an even greater desire to advocate for improved end-of-life care for patients with serious illness. Despite his dramatic decline in health, my dad had a good death thanks to his hospice team. Three days was all it took. 

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Teresa Thomas, Associate Professor at the University of Pittsburgh School of Nursing. In this episode, we will be discussing her Art of Oncology article “Three Days Was Enough.” 

Our guest’s disclosures will be linked in the transcript. 

Teresa, welcome to our podcast and thank you for joining us.

Dr. Teresa Thomas: Thank you. It's great to be here.

Dr. Lidia Schapira: It's great to have you. So let's talk about your beautiful piece, which is very personal. Thank you so much for writing and sending this and sharing this. In your piece, you say that you waited about a year before you thought about writing. Can you tell us a little bit about why you waited and why perhaps for you it was important to take some time to process the experience and then decide to share it?

Dr. Teresa Thomas: Absolutely. Well, I think it would be false to say that I waited a year to write it. I think I was writing it for a year. And like a lot of researchers, I really process things through writing, trying to make sense of the passing of my father, of course, but also what this means for me professionally. It's very ironic that everything that I study in my research, things that we encounter clinically, unfolded right there extremely poignantly with my father. And like anyone, I'm just trying to make sense of it and trying to find lessons learned where we as nurses, healthcare providers, researchers, can push things forward a little bit, which I think is what I was trying to do with the piece because it did raise a lot of questions for me and is making me rethink my research questions and how I conduct myself and what the important areas of our field really are. 

Dr. Lidia Schapira: So let's talk a little bit and go deeper into that. First, I wanted to talk a little bit about your vulnerability, personal vulnerability. It's your father we're talking about, and you clearly adored this man who is your father. Can you talk a little bit about the emotional aspect of dealing with the family's acceptance finally, or the family's readiness to call hospice in?

Dr. Teresa Thomas: Absolutely. I mean, it's all of the emotions. When I think about it, it was this very awkward place of being one of the few medically adjacent people. I'm not a practicing clinician. I am a researcher who has a nurse training. So it was this ‘I know enough and the family's relying on me and I'm going to the appointments.’ And being that in between, between the oncology team, my father, my mother, my siblings, people asking questions. And at the same time, I know this story. So it was personal and distant. I knew what was happening, that he was dying. I didn't want to know that he was dying. And it was just a crazy time too. Every day there were a thousand things going on. I didn't put this in the piece, but I was also extremely pregnant at the time, so had hormones going. My mom was getting sick herself with cancer, ironically, right as my father was dying. It was just absolutely insane. And now we're trying to unpack all of that. But to be that person that people are relying on to understand what's going on, to shepherd them, and also not really wanting to know, it was a hard juxtaposition. I knew what should be happening, right? I knew that we should be having these discussions about palliative care. I knew that he was eligible for hospice, I knew he should be on hospice, but I wasn't ready. And professionally, I wear that hat of a nurse and a researcher very reluctantly. When I'm dealing with my health care, and especially someone else's healthcare, I do not disclose, I do not try to interfere. And for Dad, I had to step up and push and interfere a little bit, which is extremely awkward and not comfortable.

Dr. Lidia Schapira: Let's talk a little bit about readiness, because readiness means so many things, but it's such an important theme here, and it's often such an important theme when we look at the literature about end of life communication. Can you talk a little bit about how this experience has informed the way you think about readiness, readiness to accept that it is indeed time for that call to hospice?

Dr. Teresa Thomas: Absolutely. So I think as a researcher and as a clinician, you want that discussion, you want the documentation, you want all the ducks in a row. You need to understand, do they get it? Is their head in that space where they're making plans? Can you think about what you want your death to look like? We need it said, we need it laid out so that we can check that box. And obviously, there's a lot more than checking boxes when this is done correctly and in a patient centered way. We didn't have time for that to happen, and yet everything still laid out. Now, I write in the piece, my dad was just very stoic and had a history of not talking about emotions. And I don't think it's all too different than his generation. And maybe men in general or there are patients that are just like that. There were never those deep conversations with the oncology team. There basically wasn't that conversation even with me. 

So beyond that, I mean, beyond just saying we had that conversation, what the piece is trying to say, or what I was trying to say was that it was the things that he did that were more important, he literally rewrote his will in his last days. In his few moments of clarity, he was sitting there. He was a wills and estates attorney. So, I mean, he was fully equipped to do this, but this is what he was doing. He knew that he was dying. He never voiced it. He never made a specific plan. But we had a care team in his oncology team, and absolutely in his hospice team, who just shepherded us and allowed him to do everything that he would have done even if he had had six months in hospice. And that's what was more important. He got what he wanted, and he was allowed to do what he wanted. And that's now how I'm thinking about end of life care and where our field in research and in executing that needs to go.

Dr. Lidia Schapira: I think that's incredibly profound. I think one of the lines that I enjoyed the most in reading and rereading your essay is when you just describe what actually happened and how he relaxed into the chair. He relaxed when he had oxygen. I mean, it wasn't so much what he said, but what you saw there was even the physical signs of somebody who says, “Well, you know, something else is happening here.” There was a transition that you actually appreciated there and captured. Am I right? And did I read that right? 

Dr. Teresa Thomas: Absolutely. That was the turning point. I mean, we are a big family. We never make impulse purchases. But my sister and I, we just drove out. We didn't care about the cost. I think my mom gave us her credit card. She never gives us a credit card. And we just said, “We don't care. This is our dad. We're buying this.” And to see him after this, just extremely precipitous decline where every breath in and out and that searching for air and all of those signs, even to take away a little bit of that, absolutely felt so good. And he wasn't totally pain free, but he had oxygen. I mean, the most basic thing you need. So, yes, that was a very good feeling.

Dr. Lidia Schapira: So the labor of breathing can be overwhelming and in a way distressing. Whether we call that painful or not is maybe just a matter of the language that we use. 

There's another theme that emerged in your writing, and again, I wanted to hear your reaction to this, and that is failure. You use the term in terms of, in so many different ways, perhaps the failure of the oncology team to develop or deliver or propose a treatment that was really good. They were done. So they- in some ways, there was a sense of failure. It was a bit of a failure of capturing the right moment to make the hospice referral. It wasn't quite what the books say we should be doing. There's a lot of that in the essay. Can you talk a little bit about how you understand failure and how that concept may in some way interfere with our ability to act or appreciate things?

Dr. Teresa Thomas: There were no specific failures as more of a secondary caregiver at the end who stepped in to assist my mom. There were likely things going on that were under-recognized, unappreciated, or because nothing was said directly that there could have been soft leeways into. “Let's talk about hospice.” That, I think, my parents did not want to hear, and that door was closed. That's where additional layers of support in how do we talk about this as a family? How do we introduce, well, hospice isn't end of life care necessarily, but there are additional supports that hospice allows that your typical oncology practice can't provide. 

I remember one conversation when my mom called me up and she was telling me that she had just met with Dad's team, and she was saying, the oncologist said, this is the last treatment, that after this, there's nothing left. She was going on and on, and I wanted to basically rip the band aid off for her. And I said, “Mom, they're telling you that it's time for hospice.” “No, absolutely not, Teresa. Hospice was not brought up. Don't bring up that word to your father. All they were saying was, this was the last treatment.” Now we can talk about that with my mom and say, “Do you see what they may have been laying the groundwork for?” And she says, “Yes, now I understand. But at that time and place, that soft entry, that door was not being opened by them.” And I don't think that's untypical. I think that we did the best that we could with the situation that Dad had.

Dr. Lidia Schapira: So, Teresa, I'm struck by the incredibly generous and wise framing that you use to talk about this. You could have said, “Oh, my goodness. It was only three days,” and instead you chose to say, “Three days were enough.” So I wonder how you did this, how you actually looked at it from that perspective, because so much of what happens to us is defined by the lens through which we see it and the words we use to construct the narrative. So tell me how you got to, “Oh, my God. They weren't ready, and there was so much failure,” to, “Hey, three days was enough.”

Dr. Teresa Thomas: The three days were important for me because one year ahead of my dad getting sick, I was writing a paper with one of my mentors, Yael Schenker, and one of the wonderful med students that we work with and we used it as an indicator of poor quality end of life care. Did the patient enroll in hospice within the past three days? And we had these wonderful discussions with Yael and Bob Arnold and Doug White and everyone here at the University of Pittsburgh involved in palliative care about what does that mean? And is this just a random quality indicator with no real world value? And I respect all of their opinions because they do see this clinically, whereas as a researcher, “Oh, this is easy for me to analyze and I have a citation that says this is a quality indicator, so let's use it.” And I thought, “Oh, isn't the world ironic? This is exactly what happened with Dad.” And it was. I mean, maybe part of it is to our Catholic faith, and threes are very important so I think that was a little for my family. 

But there was nothing else to do. We opened up, we had conversations, we had heart to hearts. We found when dad was mentally with it, we sat down with him. I gave him his coffee. He always had a doughnut, he was pre-diabetic. Who cares? There was ice cream, there were donuts, there was coffee. All of a sudden we went from, “Don't give Dad any pain meds,” to, “Where's the morphine? Give him some more.” And we timed it so that each one of us kids and his wife and his siblings, we got to say the things that, man, if it was any other illness or any other setting where we weren't there, we would have lived our entire lives regretting not having had that. Would I have wanted him to be around when the son that was protruding from my belly was born a couple months later? Absolutely. Would I have wanted more trips, more meals? Yes, yes, and yes. It wasn't going to happen. And it didn't. That's selfish. I mean, that was a selfish desire. 

He lived a wonderful life. He closed out everything in those three days. He said his goodbyes. He was ready to go. And our family is a strong family. We carried my mom through it and we carried each other through it. And for him, he deserved to go without the pain, the loss of control, the loss of being himself. When we moved him into the hospital bed, that was it. We had to help him go to the bathroom within the last 12 hours of life. And I thought, this is not my dad he's going to check out because this is just not how he's going to live his life. Is that worth it? No, that wasn't worth it. And that was him. And that's what the hospice nurse told us. Everyone checks out when they're ready. That's Dad.

Dr. Lidia Schapira: I can't resist the urge to ask you this question of how you're taking this life lesson, this really important story which you framed and articulated so beautifully here for us into your work. 

Dr. Teresa Thomas: So my work has always been in patient centered care, as nebulous as a concept as that is, and promoting patient self-advocacy. How do patients say what they need? Which is the great irony, right? That my work is corresponding exactly with what I experience and see. And I think that's probably why I love this research question. And now I see that not just the cancer experience, but framing that end of life care. And what does hospice mean? I think we had the best hospice team in the world. I don't see how any other hospice team could deliver as great care. And then, of course, I'm looking into, is all hospice like this? What are the hospice outcomes? And I realize, unsurprisingly, that we absolutely are spoiled, and this is not what most people experience. So I'm lucky that I'm in a place here at the University of Pittsburgh and with researchers that we have a palliative research center. This is easy for me to pivot into this place and to think about how do we create teams of clinicians, policies at a local level, at a state and a federal level that allow people access to really good clinicians at the end of life - clinicians that understand absolutely there's a medical management part just as much there's a human part that's happening here with the patient and with the family. 

What was it that our hospice team did? It's the easy things. They gave us one sheet of paper, one phone number, “Call this number. We will pick up. You do not need to give us your medical record number. You don't have to tell us a history.” We called that number any time, and someone answered our questions. So basic, patient centered care, so basic. How do we do that? How do we do that at a systems level? How do we prepare patients to work with their clinicians when that's not there? These sort of high touch, but very difficult to innovate in clunky segregated systems. It's given me direction, and it lets me feel like I'm helping my family in retrospect, too.

Dr. Lidia Schapira: In some ways, it keeps you connected to your dad.

Dr. Teresa Thomas: Absolutely. 

Dr. Lidia Schapira: Yeah. Well, thank you so much. It was a really beautiful, beautiful piece. Art of Oncology is about telling a story. But stories can inspire, stories can lead people to find their own path towards advocacy or research so thank you so much. To wrap this up, do you have a final message for our readers and listeners?

Dr. Teresa Thomas: Everyone has their experience with end of life and with palliative care, maybe, but definitely cancer care, and I just hope that it strikes a chord and makes people think about how we can make sure that families and patients receive the best care at end of life.

Dr. Lidia Schapira: Well, thank you so much, Theresa, for your story and for what you do. And until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO shows at asco.org/podcasts. 

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Guest Bio:
Dr. Teresa Thomas is an Associate Professor at the University of Pittsburgh School of Nursing.

"A Life and a Death in Haiku," by J. Russell Hoverman: a brother shares haikus and photos dear to his family around his brother's end-of-life care.

TRANSCRIPT

A Life and a Death in Haiku, by John John Russell Hoverman, MD, PhD (10.1200/JCO.21.02835)

My brother, Jim, was diagnosed at age 73 years with colon cancer metastatic to the liver, lymph nodes, and lungs. He and his wife were avid hikers and after retirement had hoped to visit as many national parks as possible. Big Bend National Park in Texas, along the Rio Grande River bordering Mexico, at over 800,000 acres, is one of the largest and least-visited parks in the country. The park has vast expanses of desert and high mountain islands, with some peaks over 6,000 feet. We had hoped to have Jim visit us in 2020, but both cancer and COVID-19 interfered until this past spring when we were finally able to arrange a trip to the park. It had been a few years since I had last seen Jim at our most recent family wedding. When he arrived in Austin, he appeared gaunt and frail. He had lost his taste, and many foods burned his mouth. He had lost weight and was weaker. He barely felt his feet. He struggled to just get through the day. Even so, he hiked up to a promontory overlooking the Rio Grande one day and into a canyon the next and seemed to get stronger as the week went on (Figs 1 and 2).

While in Big Bend, we talked about how he wanted to be remembered. Neither of our parents left tangible markers of their deaths. There were no gravesites, only scattered ashes in places without names. We discussed having a marker, a plaque, a touchstone, or maybe a bench at a favorite park, a place that could be visited by family and friends. This loss of continuity is likely a result of our culture—urbanization and the fragmentation of families. This is in contrast to The Day of the Dead (Dia de los Muertos) celebrated in Mexico and much of the American Southwest, where families decorate cemeteries and have annual gatherings to remember deceased relatives and friends. We forget, or perhaps never knew, how important this can be.

As an oncologist, I saw the wide variety of ways in which people died. A few years after I finished training, I joined a practice in a small town in Oregon with a large Mennonite community. One of my first patients was a church member with metastatic ovarian cancer that was no longer responsive to treatment. She required near constant attention for pain control, and the nursing facility associated with the Mennonite Church, primarily staffed by fellow church members, was her best option. My patient knew all her caregivers, and they knew her. It was as if she was receiving terminal care for her cancer by her sisters. This may have been the first time I attended the death of a patient outside of a hospital. Given that experience, I became an ardent supporter of hospice organizations, many of which were just starting. I knew that Jim was not far from the end of his life and that he wanted to be able to make his own choices, even to the point of getting it over with. We both also knew the impact of sudden, unforeseen, untimely deaths in our own family. I had hoped that Jim could be comfortable and able to participate with us until the very end. This most likely meant involving hospice care.

By summer, less than a year after his diagnosis, chemotherapy no longer controlled his disease, and there were no treatment options available. His oncologist offered a menu of possible treatments including radionuclide embolization of two liver lesions and radiation treatment of lung lesions. As Jim’s discomfort was primarily in the region of his largest liver lesion, he and his wife decided to pursue the liver embolization for pain relief, but while recovering from his chemotherapy, Jim lost more weight and became weaker.

At the time of the scheduled procedure, the interventional radiologist discussed his concern that Jim’s

change in status would make the procedure highly risky and could result in hospitalization and death. He

allowed that if Jim wanted to swing for the fences, they could proceed but he did not recommend it. More than anything, Jim wanted to be in control of his faculties, and the risks were too great. He and his family decided to return home and enroll in hospice care.

Jim was an English major in college, writing his senior thesis on the poet Wordsworth and taught high school English for 17 years. Throughout his career, he wrote poetry and was especially fond of the haiku. Haiku is a centuries old Japanese poetry format composed of 17 syllables in three unrhymed lines with the first line of five syllables, seven in the second, and five in the third. The subject is often an observation (usually of nature) or an event that is tied to or elicits an emotion. Over the years, a haiku would come to Jim, often unbidden, stimulated by a perception or an event.

While in Big Bend, we discussed adding a haiku to whatever memorial he considered. Once the decision was made to enroll in hospice care, Jim chose, from his life experiences, 17 haikus to post on social media, one daily beginning August 1. A few are included here:

Day 1: The Waterhole

Like the circumspect

Gazelle, I have waited long

before drinking deep.

Day 2: At Field’s Pond

At Field’s Pond today

a rude clique of frogs gave me

the silent treatment.

Day 7: Mt. Sugarloaf

On Mount Sugarloaf, we

met a youthful choir of pines

dressed in white robes.

By day 9, Jim was too weak to post his work. Jim’s wife continued his mission and reported the responses to him each day.

Day 11: Ripples

From shore a teacher

casts a stone. Endless ripples

roll and roll away.

Day 13: The Chase

Like a leaf that runs

from an October wind, the

cat escapes my son.

Jim died on the morning of day 16, shortly after this haiku was posted.

New Year’s Eve

Tonight, New Year’s Eve,

is so still and cold, the trees

crack like popping corks.

At the end of life, it may not be clear who is providing the narrative for care. It may be the physician offering treatment choices, another line of therapy, a new drug, a different modality of therapy, palliative care, or hospice care. The patient may never gain control of the narrative. Aggressive treatment may lead to hospitalization and a lonely death in the Intensive Care Unit.

Jim was empowered to take control of the narrative by opting for hospice care and posting his haikus. He no longer posted details to his social network about his doctor visits, daily physical challenges, and symptoms; it was about sharing his life and the wonder he found in it. The changes in responses on his social network were profound as it became less about expressing empathy and more about remembering the person he was. Just as Jim’s visit to Big Bend and the surrounding wildness and beauty of the park energized him, Jim’s satisfaction with the responses made him more comfortable, looking forward to each day’s reaction and, perhaps, making it easier for him to go.

A patient’s journey with cancer is a story told by family and friends. The satisfaction with the story depends on how the story ends. The physician’s role in the story begins when the cancer is evaluated and a treatment strategy proposed and provided. At a point in the care of everyone with incurable disease, the cancer is no longer the main issue and the patient and family take center stage. When the physician is unable to cure or prolong life, his or her role becomes that of a guide attempting to lead the patient and family to an ending that comforts all. This requires an understanding of the patient’s narrative and depends on accurate information about how the narrative will be affected by treatment choices.

The combination of hospice care with the assurance of dying at home surrounded by family coupled with the ability to connect with his extended family and friends through social media was truly transformative for Jim and for me. Jim’s control over the narrative and the direction that action gave to the care team made it easier to allow his death. Our role was to comfort and support and be present. There was no regret and no guilt with how things went. I could not have hoped for more.

A few months after Jim’s death, his family and friends gathered to celebrate his life. We met in a grove of trees in a protected forested area where he often hiked. The centerpiece of the gathering was a bench marked by a plaque with his name on it. There was also a plaque with his favorite haiku.

Dawn on the Appalachian Trail

Light slips in along

the eastern edge. I am still,

startled by beauty.

Jim’s ashes were scatted nearby.

Always the teacher, the ripples roll and roll ….

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology brought to you by ASCO podcasts, which offers a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org. I'm your host Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford.

With me today is Dr. John Russell Hoverman, now retired, formerly responsible for the development of value-based delivery programs for Texas Oncology and US oncology. Dr. Hoverman also has a PhD in philosophy. We'll be discussing his Art of Oncology article, 'A Life and a Death in Haiku'.

At the time of this recording, our guest has no disclosures.

Russ, welcome to our podcast.

Dr. John Russell Hoverman: Thanks for asking me.

Dr. Lidia Schapira: So let me start by asking a personal question. How did philosophy lead you to medicine and cancer care?

Dr. John Russell Hoverman: I always thought I wanted to be a doctor. I had a family practitioner who was an inspiration. I think from sophomore in high school, I knew I wanted to be a doctor. But I always asked other questions. So when I got to college, I had a chance to broaden my horizons, I guess. And when it came time to choose a major, because I took some elective courses as a freshman that were required, when it became time to choose a major, I chose philosophy. My family doctor said, 'You know, that's great. You should have some other discipline. Some of the humanities is probably as good as anything. And it won't hurt you if you're going to be a physician.' So I majored in philosophy and minored in biology.

Dr. Lidia Schapira: It's interesting. I had a different experience. I, too, wanted to study philosophy, and the advice I received was, well, study medicine first and philosophize later. So I'm so glad that you actually studied philosophy formally. And tell us a little bit about how you have incorporated some of the thought processes and frameworks for approaching important topics that you learned as a philosopher into your medical practice and all of the amazing work that you've done.

Dr. John Russell Hoverman: Medicine is a humanistic enterprise. So you are interested in people or you're interested in what they think. But it's also an evidence-based enterprise. And philosophy is all about evidence, especially logic. That's been one of my favorite topics. I've written about that more than once about clinical trials. And actually, that may be a paper I'll do shortly is about the logic behind the mRNA vaccines. The science is spectacular, but it wouldn't be anything without the logic of clinical trials so that when we look at providing value, which should be an ethical obligation for physicians, logic comes in handy to determine whether a structure of a clinical trial actually gets you the answer that you want. And what you want is to know what is the highest value for your patients and to be able to measure that and be able to talk about it.

And then the other part of that is end of life care, which, again, is an ethical enterprise. And it has to do with getting information and giving the right information to your patients in what you're obligated to give. As you search for that, there's more and more information that probably is needed. So that's enough. And I still love the science. The science is wonderful, but it has to be translated.

Dr. Lidia Schapira: So help me think through how we incorporate storytelling and narrative into your argument that this too has value as we think about our roles as physicians, especially when we're thinking about end of life care.

Dr. John Russell Hoverman: I think you've had the same experience, I think, that we all in our practices have stories. My brother's story is just one of them. And you think about how your view towards having conversations with patients is colored by the patients that you've had and the stories that they told. I had a patient who had lung cancer in the rural area in Oregon and wanted to send them to the medical center. They said, 'No, I lived on a farm all my life. I know exactly what life and death is, and I want to be with my family.' So we've been impressed by the interactions patients have with their families and with their physicians as to how things could end up well.

Dr. Lidia Schapira: In your essay, you used an expression that I found very powerful. And that is that your brother Jim, whose story you tell, ultimately had control of his narrative. Tell us a little bit about how that locus of control is negotiated in the relationship between the patient and the cancer clinicians.

Dr. John Russell Hoverman: Again, there are other stories to tell. So we've had patients who wanted to be in control but didn't know how to do it and actually weren't sure what they wanted. One elderly woman talked to her family practitioner, her family physician about assisted suicide. So she was dying, I think of metastatic colon cancer. She had two daughters, and one was halfway around the world, and she didn't want to bother that daughter. So she wanted to slip off quietly. And when we've talked to her about it, we knew that her daughter would be honored to be there. And in fact, that was the case. So we learn from stories to maybe probe a little bit more than we ordinarily would. If something doesn't seem to be going right, maybe there's something we can address. I think we all have instances when that's happened.

Dr. Lidia Schapira: In your essay, you also talk about the importance of storytelling and the control of narrative as a way of helping those who love the person who's dying and how that can ease the pain of bereavement. And in your particular case, when you tell Jim's story, you say there was no regret, no guilt, which is a beautiful sentiment. As physicians, we often see that there is regret and there is guilt with how families approach the last few weeks of life of a loved one. Can you tell us a little bit more about this, no regret, no guilt concept?

Dr. John Russell Hoverman: We see guilt often when things don't turn out the way families think they should. And probably the thing that we see most often is the patient dies in the hospital, and they're not at home. And what we do see with hospice care is that they don't feel as much guilt. And I think what happened with Jim, maybe taking that to another level, by being proactive about the message. And the question is, not everybody can write haikus. But what else can you do? Can you have somebody give a piece of a story? Or can you publish a photograph? Or what else can you do to mark that life as something that was worthwhile, and then everybody gets on board with that. That becomes more important than pain control or being awake again. I think we're just exploring that. For me, it was a revelation to see that.

Dr. Lidia Schapira: Now, let's turn to your essay. In the final moments of this interview, you bring life's experience as a cancer clinician, as a deep thinker. And you chose to tell the story to your colleagues through publication and JCO. What is the message in your essay for listeners and readers.

Dr. John Russell Hoverman: The message, I think, is the message that I got. To my mind, the story wrote itself. It was there just to record. Then the message to me was that this is how things could be, understanding the patient's, and I'll use that word 'mindset', so that we can tailor his care to that mindset, and in fact allow him to have as much say about how that care is tailored as possible.

Dr. Lidia Schapira: Tell us a little bit about Jim, your brother.

Dr. John Russell Hoverman: Well, he's a middle child. So we had three boys. And of course, you always think that the older one always beats up on the younger ones. Jim started to wrestle when he was in junior high school. That changed our relationship. So it was no longer a power relationship. But when he went to college, he majored in English, and I majored in philosophy. And we both were interested in the same things. Interested in how the world works, how the world got to be where it was, but Jim interrogated nature with poetry and literature, and I interrogated nature with science and philosophy.

And we've had some interesting discussions, but we were not far off from the ultimate picture. But I would talk about something about ethics, and he would have a literature reference and probably would sum up what I would do in five pages in four sentences. So it continued to be that way. We were both always interested in the outside, interested in hiking. As you can tell, I'm interested in taking photographs. So there's always a sense of being in the world that we both had. And Jim did it in his way, and I did my way. But we were never really that different, I think, in how we looked at things.

Dr. Lidia Schapira: If I may, I'd like to ask a personal question. And, of course, you don't have to answer, and that is, how are you doing in your grief over Jim's loss?

Dr. John Russell Hoverman: Well, it was good that it ended the way it was. It was bracing to watch your brother die. I'm not sure that's the best word. But it was clearly emotional. But it helps if it happened the best way it could. And he was in control. It’s not something that got away from us. And again, we've talked about sudden deaths and how those are so unsatisfying because you can never really say anything. And it wasn't that, which I know was good for him and his family. So it's not just me; his sons and his wife also appreciated the chance to have Jim towards the end of his life.

Dr. Lidia Schapira: Well, the essay is really moving. It's instructive. It's personal. And on behalf of the readers of JCO, I thank you for sending it to us. It's been a real pleasure chatting with you today, Russ, and I want to express on behalf of all of us, our condolences for your loss, and our admiration for your work. Thank you.

Dr. John Russell Hoverman: Thanks, and I appreciate working with you. I think it's much better than it might have been otherwise.

Dr. Lidia Schapira: Before we conclude this interview, Russ, I wonder if you can read one of your favorite haikus for us.

Dr. John Russell Hoverman: Sure. It's called 'The Hospital Bed', and it relates to a story that Jim's wife told me and I imagined:

Restless and moaning

His wife lies down beside him

He quiets and sleeps

That’s it.

Dr. Lidia Schapira: Thank you so much. So until next time, thank you for listening to JCO’s Cancer Stories: Art of Oncology. Don't forget to give us a rating or review wherever you listen. Be sure to subscribe so you never miss an episode. JCO’s Cancer Stories: The Art of Oncology, is just one of ASCO’s many podcasts. You can find all of the shows at podcast.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

"Good Genes," by Kaitlin Demarest: a resident searches for answers after genetic testing.

TRANSCRIPT

Good Genes, by Kaitlin Demarest, MD1 (10.1200/JCO.22.00871)

My mother was diagnosed with breast cancer when I was 5. I accompanied her to a handful of chemotherapy sessions and filled the time with MadLibs and word searches. The drive to the hospital became familiar; the diner where I celebrated my fifth birthday was on the way, as was the dairy bar and the Chi Chi’s that shut down. I grew accustomed to her wearing wigs and remember vividly the time one almost flew off her head on a windy day at Rockefeller Center. I learned that vomit could be green and what a computed tomography (CT) scan was. This is not to say that I knew what was going on or what all of it meant.

When she was first diagnosed, my dad explained that there was something scary growing inside my mom and her doctors needed to take it out. He drew an arrow coming out of a finger instead of breast tissue to help my young mind better grasp the concept. I was not sure why the cancer picked her breast to start growing in but that mattered little to me as my kindergarten logic figured it would be simple enough to take out. However, after “trying to get the cancer out” with surgery and chemo, she only seemed to get sicker. She would spend days on the couch after treatments, nauseous but not wanting the Coke syrup she would give me when I was sick.

Eventually, she returned to work, her new head of hair much curlier than before, and things seemed normal again for a brief time. I can recall multiple times, almost yearly, that I believed she was cancer-free, but then I would overhear her telling someone over the phone that she needed to start treatment again.

I clung to the belief that everything would be okay without a second thought, but then one day the summer after fourth grade, she told me and my brother that she would not be getting better. Soon she was in hospice care, and then she was gone.

Losing her at 10 years old, there was so much I did not understand. I decided I wanted to become a doctor and tried to start my medical education as soon as possible to fill in these gaps. I wrote research papers on cancer topics in middle school, took as many science classes as possible in high school, and majored in molecular biology as an undergrad. I even spent a summer shadowing oncologists, including one of my mom’s. He called me by her name a few times, which mostly warmed my heart that he still thought of her and reminded me that he had known her too. He was very kind, clearly doing the best for his patients. Watching him, I began to appreciate the rocky road of disclosing setbacks and poor prognoses as a provider.

Despite a week of shadowing my mother’s oncologist and countless visits with my aunt and uncle, both doctors, who had helped her navigate the treatment process and even took care of her when she was home on hospice, I refrained from asking about the genetics of my mother’s cancer. Perhaps due to wishful thinking, I was under the impression that my mom had been tested for hereditary breast cancer syndromes while she was alive and that she was negative for BRCA mutations. But finally, at the end of my first year of medical school, over the karaoke music at a bar after my cousin’s college graduation, my aunt told me that she had never been tested; I would need to be tested soon.

I had been scared to receive the results of my genetic testing. I had faced mortality but avoided thinking about my own. I remember my heart pounding as I listened to my genetic counselor, trying to discern any doom or gloom in her tone. After she carefully explained that I carried no mutations known to be associated with cancer, I caught my breath and relief did wash over me. Then it was all over. Years of questioning, asking what if, bargaining, avoiding, wondering, hoping all tied up. “Take care of yourself, Kaitlin,” she said, “Don’t study too hard tonight.” It was almost as if she knew. The sudden silence, the finality, and the lack of solace in my solitude; I felt panicked and empty. There would be no sticky little mutation to act as scapegoat for all my pain, no genetic alteration on which to pin her loss.

I would not have to think so much about prophylactic mastectomies, only early screening. But I was devastated. I thought knowledge would mean power, but it turned out that ignorance was almost bliss. I secretly hoped for an answer, written in our DNA, a molecule I had come to understand so well, that would explain why I had lost my mom so prematurely.

As a kid, I felt helpless against my mother’s illness and these results only exacerbated that feeling. Studying molecular biology and human physiology granted me some sense of control, but my heart ached not knowing what happened inside of her organs, tissues, and cells. I knew a lot about cancer but virtually nothing about hers. I could not let cancer have any secrets.

There are a lot of things I know and remember about her. Her love of grocery store–related game shows. Her frustration over untangling my hair each morning before school. Her Armenian way of dancing; her arms twirling along to Santana on the radio at a traffic stop. But it made me feel so far away from her to learn about the histology, diagnostic workup, and treatment of breast cancer and not know anything about her experience. Our time was cut short, so many stories left untold. Any morsel of information I could remember of her was proof of our time together and that our relationship was special, despite how young we both were when we were separated by her death. If I could not ask her about her hobbies growing up, her social life in college, or what it was like being pregnant with me, I was going to learn about what made that impossible.

I remember hearing that my aunt and uncle still had her medical records and, after asking them, they arrived in the mail along with old Mother’s Day cards and letters to Santa. The woman kept everything.

It took me a few nights, locked in my room, chasing the grief with episodes of The Marvelous Mrs. Maisel, but I made it through every page. She had a modified radical mastectomy and a transverse rectus abdominus muscle flap reconstruction, an echocardiogram prior to doxorubicin, and required Neupogen to keep her white count up. Other things I had already known: menarche was at age 11 years, she wore a sleeve to improve the lymphedema in her left arm after her lymph node dissection, she had two c-sections, and she smoked cigarettes for a brief period. Also documented was my parents’ divorce and the fact that they had me and my brother, our ages swapped. Everyone always thinks he is the older one.

It was satisfying and heartbreaking. Now I knew the type of cancer and its stage and size at diagnosis. I knew that she had surgery followed by many cycles of chemotherapy then radiation and tamoxifen. After all of this, according to an office note, she was “basically doing extremely well.” But I read on and on as her tumor markers kept rising. 52. 94. 178. 145. 375. Scan after scan showed no evidence of metastatic disease, until they finally did. One year, three CT scans, three bone scans, and a positron emission tomography CT later, she was found to have bilateral pleural effusions, liver metastases, and omental caking. She had been on estrogen deprivation therapy with Zoladex which was not working, so it was decided to perform a laparoscopic oophorectomy. The oophorectomy converted to an open procedure due to adhesions, bilateral Krukenberg tumors, and extensive carcinomatosis.

Mostly lab sheets remained after that, with platelet counts and international normalized ratio checks after she was placed on warfarin for a blood clot. The very last page was a list of information requested by the cancer center at which she was to start another round of chemotherapy to control her progressive disease. On it, she wrote a note to remind herself to have the office reach out to my physician aunt with questions. Even at this stage, she had hope chemotherapy would prolong her life.

As painful as it was, I got my answers, which showed me just how powerful and therapeutic it can be to feel informed. I had harbored so much grief for so long because not understanding my mother’s cancer made her feel that much farther away.

Many would expect the relief but not the heartbreak from hearing my negative results. The truth is, good news is good but it is also new. It does not erase the pain, worry, and loss that may have preceded it, and it does not necessarily indicate a clear path forward. New information can anchor us, quench our anxieties, or it can be an unpleasant surprise. My experience has taught me that you cannot predict how news will land on the ears and hearts of someone else. This makes it so important to leave one’s own expectations behind and to give patients the time and space that they need to process. As healthcare providers, we always want to be the bearers of good news, but we must remember that every patient has an undocumented history and any conversation can be a delicate one.

As I write, my internal medicine residency training quickly approaches. I am still shaking down cancer’s secrets but feeling closer to my mother than before. As a physician, I will meet patients and their families on some of the scariest days of their lives. I cannot take away all of their fear, but I can walk with them through all of the knowing and not knowing and make space for relief and grief alike. I hope I will always remember that my every day could be the longtime culmination of loss, worry, and anticipation for someone else. I am grateful for the good genes, good memories, and good purpose in life my mom gave me, and I will do my best to make her proud.

Dr: Lidia Schapira: Welcome to JCOs Cancer Stories: The Art of Oncology, brought to you by ASCO podcasts, which offer a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org.

I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. And with me today is Dr. Kaitlin Demarest resident at the University of Pennsylvania. We'll be discussing her Art of Oncology article, 'Good Genes'. Our guest has no disclosures.

Kaitlin, welcome to our podcast.

Dr. Kaitlin Demarest: Thank you so much for having me.

Dr: Lidia Schapira: It is a pleasure. I just like to start the conversation by asking authors to tell us what they're currently reading or what they recently enjoyed and would recommend to a colleague, what could I find on your night table?

Dr: Kaitlin Demarest: I recently finished a book called Middlesex. It's not a very recent book, but it's actually one of the books that I remember my mom reading when I was a kid, and I've wanted to read it since then. It's incredibly beautifully written and it has a medical thread through it as well, I would absolutely recommend it. Definitely one of my favorites.

Dr: Lidia Schapira: I really enjoyed that book. It's one of my favorites, too. So, you're currently a medical resident, correct? At Penn?

Dr: Kaitlin Demarest: Yes, this is my second week.

Dr: Lidia Schapira: And how's it going?

Dr: Kaitlin Demarest: It's been so great. I started in the outpatient setting. So it's been nice to step into that PCP role.

Dr: Lidia Schapira: Fantastic! Well, maybe we can even interest you in pursuing a career in cancer medicine.

Dr: Kaitlin Demarest: Absolutely.

Dr: Lidia Schapira: But let's turn to your essay, 'Good Genes'. You share with us that your mom was diagnosed with breast cancer when you were 5, and that you lost your mom when you were 10. Tell us a little bit about what motivated you to write the essay and then send it to us at JCO.

Dr: Kaitlin Demarest: Sure! It actually was when I was writing my personal statement for residency applications. My mom's experience with cancer is very much linked to why I want to be a doctor. And so, I think that's why it came up when I was writing that personal statement. I think I just had a lot to put down on paper after I'd gone through her medical records. And it was really therapeutic actually, to write it all down. And a friend encouraged me to send it in.

Dr: Lidia Schapira: There's an interesting comment there and one that I want to unpack a little bit. Writing to process an important emotional experience is therapeutic, but then the decision to share it, and in this case, perhaps share it with your future colleagues and attendings in medicine, requires sort of an additional step. What made you want to share the story with a broader community of cancer clinicians?

Dr: Kaitlin Demarest: I think I was really comforted by my genetic counselor who probably hasn't read something like this, but she just seemed to be so in tune with the range of responses that someone can have when they get genetic testing results. And I wasn't even expecting the reaction that I had and I thought that maybe it could be helpful both to people who undergo genetic testing, but also to any provider who's delivering those results.

Dr: Lidia Schapira: So, let's talk a little bit about the theme of your essay, sharing important medical news, in this particular case, the results of a genetic test. Tell our listeners a little bit about what made you want to be tested? And then how did you receive the news of the genetic test?

Dr: Kaitlin Demarest: I knew I was going to need to be tested for a while because my mom was so young when she was diagnosed. So, it was indicated for me. And I understand how it can be a daunting decision for a lot of people.

But I hold fast to the notion that knowledge is power. I'm very grateful that I underwent the testing and it really set me up with a great plan to get screening done very regularly. It's sort of a setup for that process. It honestly has brought me a lot of resolve knowing that I'm doing what I need to do in order to best protect myself for the future.

Dr: Lidia Schapira: I'm very happy to know that you feel this resolve and you feel good about it. But you write in the essay and share with us that initially, it was devastating to hear that you did not have an inherited susceptibility that we could name.

My interpretation of that statement and I want you to react to that was that in a way it made your mother's cancer more mysterious, not knowing the cause, not knowing what the danger was made the threat of the potential genetic susceptibility more vague and diffuse. Tell us a little bit about what it was for you.

Dr: Kaitlin Demarest: Exactly. When I found out that I didn't inherit susceptibility, it did make it seem a bit mysterious, both for my mom and for myself. She didn't have genetic testing done, which makes it a little bit more confusing as well. But I think I was really hoping for an answer to explain why she was diagnosed so young, although that would have been difficult news to receive as well knowing that I had inherited something that could lead to cancer.

Dr: Lidia Schapira: I found your insights incredibly powerful about the idea that news is just news, and the lens through which somebody receives the news may be different from that of the person who's sharing the news. You make this reflection that you hope that as a physician, you will sort of listen to what's happening with your patients.

Tell us a little bit about this idea that even good news that you had good genes wasn't necessarily experienced by you in the moment as good?

Dr: Kaitlin Demarest: Definitely news is new and it takes time to process that, even if it's expected to be good. And like you said before, I feel like it is good news now, but when I originally heard that information, I really needed to process what that meant, for me, but also, it just made me realize that there was more processing of my mom's death that I needed to do. Every time we deliver news to a patient, we have no idea what brought them to that space and what is going to come up when they receive that information.

Dr: Lidia Schapira: I admire the genetic counselors. Their training is specific to their discipline, but they're also trained in communication skills. I think that is so incredible because, as you say, they can't anticipate how the news is going to land. They have that moment, that sort of teachable moment, to help people begin to process what they've just heard.

So, let's talk a little bit about the other piece of the essay, which is that you sought to connect to your mother or you needed to understand the details of your mom's history. And so, you found her records when you were in medical school and sort of able to read through them. I have this image of you locking yourself up in your room instead of listening to Fabulous Mrs. Maisel and even getting some snacks and just pouring your heart and soul into reading this. Can you tell us a little bit about that experience?

Dr: Kaitlin Demarest: I think, I would have loved to have processed this a lot sooner, but I think going through the medical records in medical school was a good time to do it because I had a better understanding of what I was reading.

It took me probably three nights. I don't think they were three consecutive nights because it was definitely heavy. It was really difficult to read how things progressed and to understand the weight of it all. And not only to read what was happening in her records but to think back and remember those times and being able to look back at those memories with new knowledge filled in a lot of gaps for me, but it was definitely difficult. I feel like I have more to say but I'm struggling to find the words.

Dr: Lidia Schapira: Reading your essay, I have the impression that there were many adults who tried to help you as you were developing your own ideas about what had happened to your mom - your aunt, your uncle, your mom's oncologist who allowed you to shadow him in the clinic, which I found very endearing. Can you tell us a little bit about what was helpful, and which ones of these experiences actually were helpful to you?

Dr: Kaitlin Demarest: I remember when I received the results, and I was very upset. I called my dad and my stepmom. I think it was my dad who told me that my aunt would probably have her medical records. She sent them right away.

Just knowing that my aunt and uncle who are both physicians helped her so much through this process has been incredibly helpful and just very touching. They've been so helpful to me and inspiring to me as I move forward through my medical career.

They are the ones who helped me set up a time to shadow my mom's oncologist. And he taught me a lot about breaking news to patients. It was really amazing to get to work with him because I could see how much he cared for his patients and knowing that he was one of the people caring for my mom felt really good.

Everyone in my family has been so encouraging of me since I said I wanted to be a doctor when I was 8 years old and they've never made me feel pressured to pursue anything in particular, but they never made me second guess this purpose.

Dr: Lidia Schapira: As oncologists, we often tell our patients who are not going to be able to see their kids grow up that their kids are going to be alright and I hope your mom had that feeling that you were going to be alright. Listening to you now I can only imagine how proud she would be of the doctor that you've become and planned to be.

What message would you like the readers of your essay and listeners of this podcast to take away from the story?

Dr: Kaitlin Demarest: I hope that readers will not shy away from daunting news, whether that means they're the ones hoping to pursue testing or screening, or whether they are providers who are nervous about these kinds of conversations because while they can be very uncomfortable and they can be emotional, they're so, so worth having because they can really protect the health of a lot of people and it's a really great opportunity to form a very trusting relationship that can have a really positive impact for the long term.

Dr: Lidia Schapira: And it gives meaning to our work as well.

Dr: Kaitlin Demarest: Of course.

Dr: Lidia Schapira: It's one of the reasons that many of us get up and go to the clinic every day or every week.

It's been lovely to hear your story, Kaitlin. You're a terrific writer. Your insights are very powerful. I thank you for sharing your story with us and I sincerely hope that you consider a career in medical oncology.

Dr: Kaitlin Demarest: I'm very much considering it. Thank you so much for having me.

Dr: Lidia Schapira: Until next time, thank you for listening to this JCOs Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen.

While you're there, Be sure to subscribe so you never miss an episode of JCOs Cancer Stories: The Art of Oncology podcast. This is just one of many of ASCO’s podcasts, you can find all of the shows at podcast.asco.org.

The purpose of this podcast is to educate and inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

In January 2017, while completing his residency, Dr. Colt Williams found himself taking on a second life-changing role when his 65-year-old mother was diagnosed with treatable cancer. The problem? She did not want to live. In this episode of Cancer Stories: The Art of Oncology, join Dr. Williams on his journey to navigate the intersection of oncologic, mental health, and end-of-life care from the dual perspective of physician and family member.

TRANSCRIPT

Narrator: My Mother's Last Lesson, by Colt Williams, MD (10.1200/JCO.21.02382)

In January 2017, my 65-year-old mother was diagnosed with treatable cancer. The problem was that she did not want to live.

Her mental health had declined precipitously after losing my father 8 years before, and her grief proved insurmountable. She had been a functional alcoholic for most of my life, and commonly smoothed over the roughness of a long day with half a bottle of whiskey. Growing up, alcohol had been ubiquitous to the point of banality, yet she was nonetheless able to lead a very successful life. But the silence of my father's absence was deafening, and her few moments of relief were only ever found at the bottom of a bottle. Her life came apart at the seams as she had stopped working, lost contact with most of her friends, and rarely left the house. Then, after years of limitless sorrow, when she was told she had advanced, but treatable squamous cell carcinoma of the tongue, she wanted to allow it to end her life.

Despite a high chance of cure, my mother saw her situation as both cause and justification to end her life. Why pursue a painful and disfiguring treatment to save a life already devoid of light, companionship, or love? She argued that she had already lived a full and rewarding life, and without my father at her side, her existence had become a shell of its former self. Her advanced directive had stated “Do Not Resuscitate” as far back as my father's initial entanglement with cancer, nearly 10 years before. Long before any of these immediate issues arose, she had made it clear that, “When it's my time, it's my time.”

Her treatment team was clear that if she received the standard treatments, her probability of survival was excellent, but that the journey would be grueling. Removing a third of her tongue would likely leave her with permanent speaking and swallowing difficulties. Radiation to her mouth and throat would cause severe inflammation and pain. A temporary feeding tube would pump tasteless, khaki colored goo directly into her stomach to bypass her swollen mouth and throat. She was assured that she would be supported by an interdisciplinary team and given any, and all, measures to ensure her comfort.

She asked what would happen if she chose not to pursue treatment. Her oncologist shifted on his stool, his arms crossing, and his speech slowing. I projected my own thoughts and discomfort onto his change of posture, “Why are you asking him that? It's treatable! Tell her, make her fight!” Her oncologist warned us that her cancer had the potential to slowly rob her of her ability to speak, eat, swallow, and eventually breathe. Even with treatment, there was still a chance she could end up in the same situation if the cancer did not respond or if it came back later. All I could think was “at least we would have tried.”

My mother found the idea of death comforting as she would be released from physical and emotional pain. After our initial visit with her oncologist, however, she became terrified of the symptoms she might experience as she was dying. I too was afraid of what would come. Nightmares of her choking while I watched on powerlessly were frequent over the next few nights. Still, she was not convinced that treatment was what she wanted. I pushed her, begged her to be treated. After a long, emotional, and arduous weighing of her options, I shared with my mother's doctors a collective sigh of relief when she reluctantly agreed to treatment.

Two weeks before her surgery, I went to visit after my medical school classes. We had talked on the phone the night before, and our conversation had left me worried. My father's death was a common topic for us, but her perseveration on the irreparable void in her soul was alarming. I found her stumbling around the house, her shoulder dragging against the wall after she had careened into it. She was a drunk, but never this sloppy—something else was going on. She slid to the floor, eyes half-lidded. “I'm going to go find your dad.” I found the empty bottle of morphine shortly after I had called 911; it was my father's from when he came home on hospice nearly a decade ago. She must have held on to it for all those years, her fire escape from a burning reality.

The morphine was too old and there was too little left in the bottle to kill her, but the message her actions sent was loud and clear. Until examined and cleared by a psychiatrist, she was unsafe to be alone. She had a long history of bipolar disorder, acknowledged but untreated. Her mood would cycle between periods of working late every night to days at a time where she would not leave bed or even shower. There had been stints in the past where she had seen a psychiatrist or tried medication, but they never lasted. She enjoyed being colorful, eccentric, and prone to strong feelings. During the week of her hospitalization, there was no argument that she was unfit to make her own decisions and that her mental health needed serious attention.

After she had returned to an acceptable level of risk to herself, she was discharged on several mood stabilizers and with a follow-up visit with a psychiatrist. She went for a few visits; I suspect more to affirm business as usual rather than out of genuine interest. She quickly stopped going, and her passive suicidality and romanticization of death were ever present. She spoke often of the simplicity and relief of simply ceasing to exist. It has been well established that the risk for suicide is twice as high in patients with cancer compared to the general population, and my mother's history of bipolar disorder and alcoholism further compounded that risk.1 I honestly do not know why there was not a psychiatrist on her care team from the very beginning; her unmanaged bipolar disorder was cause enough to justify comanagement. I deeply regret not having advocated strongly for one from the beginning of her treatment.

As her son and having recently become a new physician, I struggled to know how to help my mother. I tried to delicately toe the line between acting as my mother's advocate and protecting her from herself. In a patient as complicated as my mother, one with extensive comorbid psychiatric illness interspersed with episodes of acute delirium, the patient's history of previous preferences may be quite valuable. In my own fear of losing someone I loved, I lost track of what was truly important to her as a human being. The exigency of her attempted suicide blinded me to the otherwise valid intricacies of her longstanding values regarding her end-of-life care.

Even amid the turmoil of her attempted suicide, the specter of her cancer never strayed far. Ultimately, she resigned herself to treatment, undergoing surgery, completing radiation, and receiving two cycles of chemotherapy. She tried to quit three times, each time her radiation oncologist and I encouraged her to continue. Despite her insistence that life was not worth living, she continued onward, driven more so by the fear of a painful death than by the desire for life itself.

I was acutely aware of her existential angst. At the time, it felt like a festering wound that had been covered merely to spare the eyes of those looking on. I was starting my medicine residency at this point, and my burgeoning understanding of patient care only added to my disquiet. I found her plan of care to be hollow. If she truly did not want to be treated and only wanted to avoid suffering, did treatment have to be all or none? Couldn't her physical suffering be minimized while still respecting her autonomy in her right to choose how she should live and die? More disturbingly, if her desire to forego treatment wasn't sound, why wasn't her mental health being treated more aggressively? I could not put these worries to words, and only with the clarity afforded by time can I now explain what exactly troubled me as new physician, let alone as her son.

The hollowness I felt in her care could not be directed toward her care team, as they provided the standard of care. Her surgeon performed excellently in the operating room, her medical oncologist prescribed appropriate chemotherapy, and her radiation oncologist delivered her radiation with precision. Equally, my mother participated in her care as much as her mental health allowed her to. The health system, however, failed her. It felt as though she received her care piecemeal from each specialist, rather than visiting with members of a unified team. Where there should have been collaboration between oncology and psychiatry, there was fragmentation.

Early integration of psychiatric care would likely have had tremendous impact on the last year of her life. Cancer does not afford us the time to treat our patient's diseases sequentially; her mental health had proven to be as great of a threat to her life as her malignancy. Although distress screening and integrated psychosocial treatment are standards of care set by the Commission on Cancer, access to mental health care is still woefully inadequate in many parts of the United States.2 As oncologists, we will inevitably treat patients with mental illness, addiction, or both. Assessment of and intervention on our patient's mental well-being should be given as much priority during our visits as investigating a new anemia or peripheral neuropathy. When there is not a collaborative care model to fall back on, it is imperative that clinicians strive to ensure that patients receive the resources they need.

Despite it all, despite the arguing, the pleading, the crying, the pain, the suffering, despite completing her therapy as prescribed, her cancer continued to grow and surrounded her airway. She entered home hospice and struggled along for a few more weeks. She called me one morning after another sleepless night, gasping for air, and told me, once again, that she was ready to die.

I had learned to ignore those words, alarm fatigue blunting their emotional impact, but this time there was something different in the way she spoke. She was neither groping for consolation nor lost in the trance-like depths of her grief. Her voice was calm and determined, strength drawn from the finality of her decision. She did not need to fight anymore; the imminence of her death was now inevitable. It was the most peaceful she had ever been in my adult life. Six days later, after she stopped putting food or water into her feeding tube, she finally found the relief she had so long desired.

It has taken these 4 years to realize that my desire for what could be obscured my ability to see what was. More than anything, I wanted to spare her from what I saw as avoidable suffering, but I had also seen an opportunity. She would have needed to be sober for chemo, or risk toxicities above and beyond what was already expected. I let my emotional needs drive how I advised her. I wanted her to be treated because I was too afraid to accept her mortality, and too hopeful that this could be the start of sobriety. In the moment, I told myself that she could not truly want to forsake a future that still held so much potential, that she could not truly be willing to abandon her family. At first, I looked back upon my actions with cold acceptance, telling myself that her untreated mental illness was clouding her judgment. I felt justified in pushing her to continue with treatment in what I saw as my duty to care for her. The steadfastness of my conclusions softened into ambivalence the more I reflected. Through my supposedly benevolent interjection in her life, did I inadvertently cause her more suffering in my attempt to avoid it?

Now, I am no longer certain I would have pushed as hard or for as long as I did, or perhaps have even pushed her at all.

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org.

I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford. My guest today is Dr. Colt Williams, a fellow in medical oncology and ethics at Mayo Clinic. He will be discussing his Art of Oncology article, ‘My Mother's Last Lesson.’

Our guest has no disclosures.

Colt, welcome to our podcast.

Dr. Colt Williams: Dr. Shapiro, thank you so much for having me today.

Dr. Lidia Schapira: It is my pleasure. I'd like to start by asking you what you are currently reading, or what you have recently read that you would recommend to our listeners. I suspect that most people who love to write are also avid readers. Am I right?

Dr. Colt Williams: You are very right. I actually love science fiction. And I recently picked up Ender's Game - I had never read it despite the media attention it got a few years ago when the movie came out. And boy, it is just as good as I hoped it would be.

Dr. Lidia Schapira: That's fantastic. I'm glad you enjoy it. Let's talk a little bit about your essay. It is very, very personal and very moving. The strong message I took from your essay was how important it is to support caregivers, and how important it is to recognize and attend to mental health during cancer treatment. Tell us a little bit about what led you to write and share this very personal moving story.

Dr. Colt Williams: My family life growing up was very private. And both when my father initially had cancer in 2009, and then when my mother fell ill in 2017, the culture within my family was very isolating. And I found myself left without much support for myself as a caregiver to my mother. And equally for both my parents, when they were going through cancer treatment had in a way kept them from being able to experience a lot of the help that they needed for both of them.

Reflecting back as I grew through my medical training, and became a resident and then a fellow. As I became my mother's primary caregiver, I saw the damage that that had played both for her and for myself.

And in reflecting on this, I had always felt that there was something that wasn't quite right with how things had played out with my mother's death. And I really wanted to be able to put to words for my own healing more than anything else, a way to find closure from my experiences.

Dr. Lidia Schapira: Let's talk a little bit about the process and the motivation to write as a way to express yourself to achieve some clarity, as you say, to bring closure. How did you get started? And how long did it take you to write this piece?

Dr. Colt Williams: Getting started was the hardest part. I initially wrote a very early version of this in medical school when my mother was first diagnosed with cancer as a case report for how we may approach our patients with comorbid mental illness and physical illness.

And that first case report changed many numbers of times in the ensuing four years that it took, or five years, actually, until its final form. I started working on it in earnest again, after shelving it about a year ago. It took a solid year of coming back to the piece a few times a month, looking at wording, looking at the way I was writing to really make sure that the message I was wanting to convey was clear because I felt there was so much that I want to explore both of myself, and so much I wanted to share about my experience. But I also knew that I needed to distill down my experience into a few key points that would, one, really resonate with myself in terms of what were the issues that kept me from feeling that I had the closure that I so desired, but two, how can I make this a digestible piece for my audience.

And writing has always been something I've enjoyed. I've enjoyed writing poetry. I've enjoyed reading. And for me being able to put pen to paper to help catharsis some of my thoughts has always been very useful for me.

Dr. Lidia Schapira: So, did it work? Did this piece give you what you hoped it would give you?

Dr. Colt Williams: It did in a bittersweet way. It was very hard sometimes to sit down and really think about some of these harder moments that I shared with my mother and to go back and relive them but in taking the time to very thoughtfully relive what were traumatic experiences for me, I was able to examine them now with the benefit of time, in a way that I couldn't because of my emotional clouding at the time for how intense the emotions were. And so, writing did provide me with a lot of closure.

Dr. Lidia Schapira: Sometimes it takes many years to be able to write about something that is emotionally resonant. It's taken me about 20 years to be able to write about a patient that I love dearly who's died, so I totally understand.

But what about the other piece that is sharing these very personal thoughts with a broader audience, especially since you're sort of still in training.

Dr. Colt Williams: I remember coming away after my mother had died, and we had her cremated and we had finished with our small ceremony for her thinking that the experiences I had had with her mental illness, with her alcoholism, with the attempted suicide, all of this during training were all things that seemed that, at first glance, I may not want to share. This complicates things. I don't want my residency program director to know what's going through or my potential fellowship matches to know the troubles that I've been going through. While I was doing well with things, I felt that there was a lot that not only I could learn, but that could be really helpful for others.

Case in point, with how isolating things felt, I felt this need to connect with other people through my experience. And I felt like the conclusions that I had arrived at really coming to terms with the fact that I was and am ambivalent about my actions with how I pushed my mother to receive her care was something that other people could relate to, and that someone else could learn from. And I hoped that I was able to maybe shorten the period from writing, from point A to point B in that process for someone else, through reading about my own experiences.

Dr. Lidia Schapira: How has this experience, Colt, informed your work? I can't help but comment on the fact that you're doing a fellowship, not only in oncology but in ethics.

Dr. Colt Williams: Extraordinarily informative. I think about my mother often when I see my patients, for better or worse. I can't help but project sometimes with some of my patients, but it gives me a reason to pause and to be patient, whereas maybe some other colleagues may be less tolerant of individuals who are non-adherent with their medication regimen or decided to end their radiation treatments early because of side effects despite the clear risk to their health in doing so.

I feel that I can approach patients who can be more complex and may be more nuanced in a way that I can provide them with the grace and with the space that they need to be individuals, even if that does not necessarily line up with what we as their physicians know to be best for their physical health, knowing that not everyone can abide by the restraining needs of cancer treatment.

And by extension, with my interest in ethics, there were a lot of things that I saw both in the way that my mother interacted with her physicians, the ways that she was able to push them, the ways that she was able to make them uncomfortable, made me think a lot about how ought we care for patients like this? And who are we as physicians in the roles of our patients' lives? What role are we playing for them? And how should we exert the very clear power that we have and the important role that we have in a way to make sure that we're always acting in our patient's best interests?

Dr. Lidia Schapira: That sounds amazing, actually. Can you give me and share with our listeners an example of how your own experience as a caregiver and as a witness to your mother's complicated history, as you talk about her romanticizing deaths, and really being prepared to die, almost from the time she was diagnosed, how that has perhaps impacted your clinical care?

Dr. Colt Williams: I can think of a few patients I've seen recently who have come to me after learning that they have metastatic cancer at their time of presentation, very openly discussing forgoing treatment in its entirety, despite there being options proven to not only prolong their overall survival but their quality of life.

And I feel that, even within my group, there are some providers that would really, really push strongly for those patients to consider those treatments without taking the time to consider why: why are you approaching your treatment like this? Why are you approaching your disease like this? What is it that makes you think that this is the right way?

And I say think not to imply that they think it's wrong or to think that they are thinking wrong, but to truly understand where they're coming from as an individual and as human beings.

We all have extraordinarily unique experiences that lead us to become the people that we are. And all those experiences are valid, and simply because my understanding of how I believe I can best take care of you doesn't line up with what your experiences are, does not mean that your goals for your own life are any less valid than what I think you ought to be doing.

So, I think at the end of the day, I'm willing to have a conversation more often with my patients. I'm willing to get myself into places that might be both uncomfortable for me as the provider, and uncomfortable with the patient if they're willing to meet me there on common ground, so we can really find what is going to be for them as human beings the best treatment path moving forward - treatment or not.

Dr. Lidia Schapira: It's wonderful to hear you and one of the themes that I hear in your approach is that you find medicine not only rewarding but really mission-driven. And part of the mission is to get to know the person who has the disease.

I found your essay very powerful because it addressed so many different issues that make caregiving and giving of professional care so complex. One is the idea of a whole person perspective worldview, as you've just explained to us the idea that we want to listen to and help patients tell us what matters to them, and help them live their journey according to their own values and aspirations.

But the other is the issue here of the sadness that emerges from your essay. The fact that your mother was ready to accept the sadness and the finality of death. The fact that it was complicated by her lifelong addiction and history of alcoholism, as you say, the deafening silence of your father's absence in her life. And perhaps what she felt she wanted to do for her children whom I am pretty sure you don't say it, but I'm sure she loved dearly.

How did you manage to put all of this into the essay? It certainly impressed this reader, but how did you make that decision to include all of these different threads into your narrative?

Dr. Colt Williams: It felt dis-genuine to not include them. And how I managed to do it, I think is a mystery to me as well, to be completely honest. The sadness, the pain, so many compromises with her, so many times where I worried about her, so many times where I could think to myself, if only things were a little bit different, if only she could see things and the way that I see things, that was such an integral part of my experience, and through the pain of not being able to have the person that brought you into this world see the value in their own life was really the impetus that led me to the conclusions I'm now able to draw about recognizing her own values and individual.

And while I will always intrinsically see her as my mother, and for all the things that a mother means, before she was my mother, she was still her own person. And those beliefs preceded me. And while any child, I think, would want to think that they are the center of their parent's life, sometimes you're not.

Dr. Lidia Schapira: In your essay, you share with the readers that you feel that she found her peace before she died. Have you made your peace with her death?

Dr. Colt Williams: I think I have now. I struggled with it for a long time. I struggled with whether I did the right thing by encouraging her to seek treatment when she didn't want to. I struggled with whether I should have pushed harder.

I fought with myself on both sides of the coin, which way I should have gone playing out the 'ifs'. What if I would have done this? What if I wouldn't have done this? How things could have been different. But in the end, it's the truth that when I spent my last few days with her, it truly was the most peaceful I had ever seen her in my life. That te restlessness that could be felt within her, even before she was ill, was gone.

She was finally complete in a way. She, in her mind, had completed her mission. I was in medical school. I was successful. My sister's a lawyer. She's doing well. Her children were grown and taken care of. And she could finally be free of what she felt like were fetters holding her down to a horrible existence.

And I think the experience of being able to be present with her and to place myself in her shoes, as best I could, was really enlightening. And I think my last week with her while she was at home dying was the most formative event of my life.

Dr. Lidia Schapira: I've never seen you with patients, but I suspect that you're very sensitive to the plight and situation of caregivers. Can you tell me a little bit about that?

Dr. Colt Williams: Cancer is a disease that affects not only the patient but the entire family. It takes many people to take care of our patients, from the physicians to the nurses to our pharmacists to our CNAs that are in the hospital, but equally, we see them for an hour, if we're lucky every three weeks, and our patients' family members or their caregivers are with them the other 24 hours a day and the other times, they're always there. And if it wasn't for their caregivers, our patients certainly would not be doing as well as they are.

Cancer is not just a disease that affects the organs, but it's also a disease of existential angst. It's a disease that affects our understanding of what it means to be human, of what it means to have a limited time on this earth, to be mortal beings. And those are things that we often as a species avoid encountering until we absolutely have to.

As I saw myself, trying to handle this in isolation does not bode well. We are a social people and we rely on our caregivers and our family extraordinarily heavily. And it's just as important to make sure that our patients' families are set up for success if we want our patients to succeed, as it is to make sure that we've dosed our chemotherapy appropriately or provided the appropriate antiemetics before infusion.

Dr. Lidia Schapira: Listening to you talk convinces me that you have found your path in onc, and in ethics, and perhaps moral philosophy as well. It's wonderful to hear you reflect. I thank you very much for sending us your work and wish you much success in your career both as an oncologist and ethicist.

Dr. Colt Williams: Thank you, Dr. Schapira, for having me. It's been an absolute pleasure to speak with you.

Dr. Lidia Schapira: Until next time, thank you for listening to this JCO’s Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen.

While you're there, be sure to subscribe so you never miss an episode of JCO’s Cancer Stories: The Art of Oncology podcast. This is just one of many of ASCO’s podcasts. You can find all of the shows at podcast.asco.org.

The purpose of this podcast is to educate and inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO the mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

"To the Cadaver With the Port," by Kendahl Servino: A medical student begins school in the midst of a pandemic, but also, in the middle of cancer treatment.

TRANSCRIPT

Narrator: “To the Cadaver with the Port” by Kendahl Servino, B.S. (10.1200/JCO.21.01979)

It was easy to spot the cadaver's port implanted in her chest. The small, triangular object stood out against the pallor of her skin, preserved in the same manner as the rest of the bodies in the anatomy laboratory. As first-year medical students, we met our very first patients here. A quiet veneration was interlaced in the air amid the formaldehyde, and it clung to us the first day we stepped into the anatomy laboratory.

It was easy to spot the cadaver's port implanted in her chest. The small, triangular object stood out against the pallor of her skin, preserved in the same manner as the rest of the bodies in the anatomy laboratory. As first-year medical students, we met our very first patients here. A quiet veneration was interlaced in the air amid the formaldehyde, and it clung to us the first day we stepped in the anatomy laboratory; we recognized the privilege given to us to learn about life and death through the human body in such a personal manner. Yet amid the reverence, I mourned this cadaver in particular, because the small port was a device used to administer chemotherapy. Easily overlooked by one unfamiliar with its purpose, it was a telling sign of cancer. It was the same port that I had in my own chest.

In the midst of a busy anatomy laboratory session that day, I was immediately taken back to a different day 9 months ago. During the winter break of my last year of college, I drove myself to the hospital for a seemingly innocuous visit and walked out with a cancer diagnosis, unable to fathom what had just happened. Graduating college, celebrating with friends, and starting my career in medical school had been the milestones of my foreseeable future; finishing chemotherapy, ringing the bell at the end of treatment—a monumental moment for many patients—and surviving cancer had not been among them. I never expected to grapple with my mortality at 20 years old.

As I stared at the cadaver's port, I wondered: was she with anyone when she was told she had cancer, or had she been alone, like me? Had she been devastated upon learning of her diagnosis, overcome by shock as I had? What kind of care did she receive thereafter? Did she have faith in herself? Had she felt hurt, searching in vain for an explanation of why she had been dealt such desolate cards? Did she feel betrayed by her own body, as I had? Moments of my own experience flooded back as I stood by her lifeless side. Looking at her face, still as though she were asleep, I wondered if she asked herself the same questions that I could never find the answers to myself.

Even if every other aspect of our life stories were different, I knew at the very least that this cadaver and I shared the burden of a shattering diagnosis. I suspected that we shared the weight of the concomitant struggles that quickly follow the words, “You have cancer.” Having spent the past year receiving chemotherapy and radiation, losing my hair, and most importantly, struggling with the overlooked, psychologic side effects of cancer, never in my life had I felt so lost. I wondered whether the cadaver with the port had felt this way too.

At times, it has been hard for me to heal while in the medical school, an environment that often reminds me, although unintentionally, of the trauma that cancer precipitated. When I observe the skillful hands of the attending physician as she instructs how to conduct a proper breast examination, I am pulled back to the memory of stumbling out of the women's health clinic in a trance, numbed by what I had just been told. During lectures taught by brilliant professors on chemotherapeutic agents, I cannot help but recall the memory of sitting in the infusion center watching those very drugs dangling from the intravenous pole drip inside me. During a charged class debate on the efficacy of self-breast examinations, I struggle to sequester the unsettling feeling that arises in my stomach as I am prompted to revisit the emotional burdens of what I endured. And soon, when my classmates and I learn how to deliver hard news to patients, such as a diagnosis of cancer, I will be reminded of what it felt like sitting in my patient's chair.

As I stand at the intersection between the medical student and the patient with cancer, I am learning that studying a disease, understanding its pathophysiology and mechanisms behind the indicated treatment, is entirely different from being on the receiving end of those medications or being the recipient of the diagnosis. Because of my dual identity, I am slowly understanding what it fully means to empathize with patients' situations. As I felt connected to the cadaver, I realized so too would I see myself in my future patients' struggles. Despite the burdens that I am currently working through, my experience with cancer has provided me something to offer to others, something that has, and will continue, to connect me to others. For the first time since starting the medical school, I am beginning to see a future not clouded by trauma, but instead filled with the potential for impactful connections and beautiful moments.

If nothing else, I write this as a thank you to the cadaver with the port. Thank you for teaching me about life through your death, and for reminding me that there is so much of mine left to live. Thank you for reminding me that there have been others who have shared my struggles and that our pain does not exist in a vacuum. Healing, I realize, is not linear. But the power of shared experiences can help heal wounds, including those that lie deep within us. These moments are found not in textbooks or in lectures, but instead between two individuals when all other differences are cast aside. And while my patients may thank me one day for changing their lives, I will have to thank them for changing mine.

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org.

I'm Lidia Schapira, professor of Medicine at Stanford, associate editor for JCOs Art of Oncology, and your host for this program.

With me today is Kendahl Servino. Kendahl is a second-year student at the Reno School of Medicine and the author of, ‘To the Cadaver with the Port’. Our guest has no disclosures.

Welcome to the program, Kendahl.

Kendahl Servino: Thank you, Dr. Schapira. It's great to be here today.

Dr. Lidia Schapira: So, before we start, I like to ask our authors to tell me a little bit about their process for writing, and first of all, what they enjoy reading. So, what would I find on your virtual night table today?

Kendahl Servino: I've always been a writer. When I think about my childhood, it's comprised a lot about many trips to the public library. My parents encouraged my brothers and me to read from a young age and I have just a plethora of memories of going to the library after school. And on summer vacations, we would just spend our free time there. Books were just a great way to experience other lives vicariously and to really see different perspectives.

My love for reading translated into my own interest for writing. As a child, I have memories as early as kindergarten of me writing. I would take those standard 8 by 10 computer pieces of paper, I would take a stack of them, I would fold it in half. And I would staple it along its spine. And I'd create essentially a little book.

I think the first book that I ever wrote was in kindergarten, and it was about this talking rose on a farm. And there was this whole rivalry and it was very vivid in the imagination of a six-year-old. But writing has always just been a part of my life, and especially coping with cancer became a lot more meaningful and impactful to my life.

Dr. Lidia Schapira: So, writers are usually readers as well. So, I'll go back to my initial question. Also, what books are you reading now? Or what book would you recommend to our listeners that you've read in the last year or so if you've had time to read as a medical student?

Kendahl Servino: Time is definitely limited. But currently, I'm reading a book called, A Little Life, by Hanya Yanagihara. I'm not sure if I pronounced your name correctly. And I'm not sure if you've heard of this book, either. It's a pretty big book, I think it's 800 or so pages. But it's about these four men who met in college, and they are currently living in New York and they're struggling with the transition into adulthood. They're dealing with a lot of issues. It's not for the faint of heart, I would say because there are a lot of trigger warnings in this book. They deal with a lot of issues such as self-harm, eating disorders, and mental health.

There's all a lot of issues that they cover, but you get really close and connected with the characters and you feel a sense of bond with them by the end of the story. I don't want to give too much away about these characters' storylines, but it's a very impactful book so far that I would recommend.

Dr. Lidia Schapira: So, it's interesting to hear you talk about this book that you admire, and that touched you because your essay had the same effect on the readers and certainly on me. It starts with this amazing line. I want you to tell us a little bit about that experience that you had as a very young cancer survivor, choosing to attend med school walking into the anatomy lab, and then seeing this device that you recognize on your cadaver's chest wall as a port, and that amazing way that you phrase the fact that you immediately felt this connection to this cadaver, bring us to that day.

Kendahl Servino: Yeah. So, I'll start with a little background. So, starting medical school, I was in the middle of cancer treatment. Actually, right before I started medical school, I just finished radiation therapy. And within a couple of days after finishing and leaving my radiation oncologist's clinic, I moved to Reno, I was living in Las Vegas originally.

So, all of this was still pretty fresh. And, admittedly, I mean, it still is right now. It's been about a year since I finished treatment. But the height of treatment was when I started medical school. And so, everything was still really heightened emotions at the time. And upon seeing that cadaver with the port, it was really surprising to me, because even though I had finished chemotherapy myself, and I had been about three or four months out from finishing chemotherapy, my hair was finally starting to grow back at that time, I think seeing that cadaver with a port showed me that cancer is never really over. That's something that I've been learning.

And so, you think about ringing the bell. For those who aren't familiar, there's this bell that's often in many cancer clinics. It's this giant bell on the wall that you get to ring when you finish treatment. It's a really impactful moment, for not only the patient who's ringing the bell, but also everyone else in the clinic who can hear and understand the struggle of what the patient went through, and it's a collective celebration and something really special for cancer patients.

So, you think about that as being kind of the end all to finishing cancer treatment. But what I've been learning since finishing treatment on my own and since being in medical school is that cancer treatment or cancer itself, and any other monumental diagnosis like this does not really have a finite ending. It'll always carry and stay with you, for better or for worse.

I think that reminder of seeing the port, and seeing that connection reminded me that I will always have this part of me, this has changed me even a couple of months out from chemotherapy, or even a decade into my own future practice as a physician. And this will be an experience that will always stay with me and hopefully connect me more with patients in the future as I felt connected to the cadaver.

Dr. Lidia Schapira: In your essay, you reflect on the psychological side and the psychological suffering that accompanies that cancer journey and the diagnosis and you also talk a lot about connection as something that you find very important in thinking about your future as a physician. Can you tell us a little bit about the emotional process and the healing that's taking place now even? Also, if you can, can you reflect a little bit on sort of your dual identity as a cancer survivor now and medical student, and whether or not it's really problematic for you?

Kendahl Servino: Some of the psychological effects were a lot more monumental, I would say a year ago from now when I started medical school. Medical school is a very challenging transition for anyone undertaking this experience.

And I definitely had struggles adjusting to medical school, but I think as a cancer patient, on top of that, I faced a lot of unique challenges. I think that had a lot of impact on mental health. For example, I was wearing a wig at the time. I was bald. So, that was really hard on top of moving to medical school. And, of course, in the midst of a pandemic, on top of everything else. Things were hard for everyone at the time but being a cancer patient posed some unique challenges for me, amongst my classmates.

And so, you asked about the dual identity between cancer patient and medical student, and you asked about whether it's problematic. And admittedly, at the beginning of medical school, I think I really struggled with learning about, say, the chemotherapeutic agents that we'd receive lectures on, learning about how to conduct a proper breast exam. And those were very triggering for me, having just experienced that so recently, and so sometimes I thought that the trauma that I was reminded of so frequently, but unintentionally, in medical school was a lot for me, and something that I have been working through and I'm thankful to say now that a year later, I'm no longer as triggered by these moments in school, although they still come and go. But I think seeing the flip side of what it is like from the patient's point of view and the provider's point of view is really insightful because as medical students, we're learning to become providers and our role is to offer care to our future patients. And as a cancer patient myself, I've had unique insight into what it's like sitting in the patient's chair, being a patient with more medical needs than most.

So, in some ways that dual identity has proffered really great insight into what my patients might be experiencing and feeling. But on the other hand, it also precipitates a lot of emotion, sometimes strongly that I am not ready to face again, or would want to be reminded of.

Dr. Lidia Schapira: As you speak, Kendahl, it occurs to me that you probably need to sort of make a decision about how much you want to share about your personal circumstances, very often with your professors, with your classmates, even with your patients. How do you manage that?

Kendahl Servino: Truthfully, I'm still trying to figure out the balance too, between oversharing and wanting to share, because I think that I have a lot to offer, the way that anyone who has overcome challenges can share something with others.

As far as my future practice, and you mentioned future patients, I think that's something that I would like to connect with my future patients about in a way that is understanding of their own circumstances and whatever it is that my patients are going through with the intention of letting them know that I can understand to an extent of what they're experiencing, what they're going through, and I'd hope to convey that I will do all that I can, in my own future practice to help them and to help them heal.

Dr. Lidia Schapira: Back to you, has your medical school, and do your professors and classmates support you in the way that you need to be supported? Are they there for you on a bad day?

Kendahl Servino: I would say so. I don't have too many bad days, thankfully, as I did before medical school. I would say that the semester before medical school, which was the semester that I was in chemotherapy, I think that was my absolute lowest. And so, being in medical school, I haven't experienced that, thankfully, but I do have my support system here. I'm really thankful for them. I have been pretty public about my experience. Also, I created a blog a couple of years ago that I started out in college to convey my experiences as a college student and going through the formative time that college brings.

But during cancer treatment, I also used that as a coping mechanism. Going back to writing has been part of my roots. I blogged a lot about my experiences. And now on social media, I post about some of my experiences. I try not to post just about the accomplishments, I also like to share, to an extent, the challenges also and the hard times, because I'd like to stay true to the authentic experience that cancer was and it wasn't just ringing the bell. It wasn't just accomplishing these milestones. It was also about my lowest times and the times that I wasn't sure I'd get through it. And so, I like to share all of that, and I try to be as authentic and genuine about my experience.

Dr. Lidia Schapira: Well, I hope the process of writing this essay that you sent to JCO was helpful and was therapeutic for you as well. And coming back to your writing, which is beautiful, it's crisp, it's clearly very intentional, what is the message for the readers of JCO?

Kendahl Servino: Thank you! I would say that cancer was, inarguably, the most challenging thing I've ever experienced in my life, bar none. And I would never want to go through something like that again and I would never wish that upon anyone else either. But I do believe now that it will help me in becoming the best doctor that I can be one day in my future practice. I think that's the most that I can ask for from an experience like cancer and the most that I hope to bring out of it is the impact that I can give to my future patients.

Dr. Lidia Schapira: Beautifully said. So, I'm just curious, do you know what path you'll follow in medicine? Do you have an idea of what kind of doctor you want to be? I know a good one and one that connects with her patients, but do you have any idea of where you're headed?

Kendahl Servino: Yeah, I currently do have interests in something oncology-related. I'm not sure at the moment whether that will be the medicinal route or the surgical route. I got to know both sides of the spectrum through my oncologist, but I also got to know my plastic surgeon who was on my team as well. And I have interests on both sides of the spectrum. But I think something related to oncology would be really fulfilling and impactful to my career and hopefully be able to change the lives of patients going through something that I've experienced so personally.

Dr. Lidia Schapira: Well, hold on to that feeling. Thank you so much for writing. I wish you good health. And I hope you do join the global cancer tribe in some capacity. It was lovely to get to chat with you, Kendahl, and to read and reread and reread your essay. Thank you very much!

Kendahl Servino: Thank you so much. It was great being here and I appreciate you inviting me.

Dr. Lidia Schapira: Until next time, thank you for listening to this JCO’s Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCO’s Cancer Stories: The Art of Oncology Podcast. This is just one of many of ASCO’s podcasts. You can find all of the shows at podcast.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

“My White Coat Doesn’t Fit” by Narjust Florez (Duma): a medical oncologist shares her story about exclusion, depression and finding her way in oncology as a Latina in medicine and oncology.

TRANSCRIPT

Narrator: My White Coat Doesn’t Fit, by Narjust Duma, MD (10.1200/JCO.21.02601)
There I was, crying once again all the way from the hospital’s parking lot to my apartment, into the shower, and while trying to fall asleep. This had become the norm during my internal medicine residency. For years, I tried hard every day to be someone else in order to fit in. It started with off-hand comments like “Look at her red shoes,” “You are so colorful,” and “You are so Latina.” These later escalated to being interrupted during presentations with comments about my accent, being told that my medical school training in my home country was inferior to my US colleagues, and being assigned all Spanish-speaking patients because “They are your people.” Some of those comments and interactions were unintentionally harmful but led to feelings of isolation, and over time, I began to feel like an outsider.
I came to the United States with the dream of becoming a physician investigator, leaving behind family, friends, and everything I knew. Over time, I felt pigeonholed into a constricting stereotype due to my ethnicity and accent. Back home, I was one of many, but in this new setting, I was one of a few, and in many instances, I was the only Latina in the room.
I was raised by divorced physician parents in Venezuela; my childhood years were often spent in the clinic waiting for my mother to see that one last patient or outside the operating room waiting for my father to take me home. The hospital felt like my second home, growing up snacking on Graham crackers and drinking the infamous hospital’s 1% orange juice. “She was raised in a hospital,” my mother used to say. Sadly, that feeling of being at home in the hospital changed during medical training as I felt isolated and like I did not belong, making me question my dream and the decision to come to the United States. I remember calling my family and crying as I asked “Why did I leave?” “Why didn’t you stop me from coming here?” and seeking permission to return home. I felt like I was disappointing them as I was no longer the vivid, confident young woman who left her home country to pursue a bright future.
I remember one colleague, Valerie (pseudonym), from Connecticut. Valerie attended medical school in the United States, did not have an accent, and was familiar with the American health care system. She understood how the senior resident-intern relationship functioned, a hierarchy that continually confused me. Over the following weeks, I took a closer look at how my colleagues and other hospital staff interacted with Valerie. I noticed that people did not comment about her clothing or personality. She was “normal” and fit in. I remember my senior resident asking me, “Narjust, why can’t you be more like Valerie?” Ashamed, I mumbled that I would try and then ran to the bathroom to cry alone. That interaction was a turning point for me; I got the message. I needed to change; I needed to stop being who I was to be accepted.
As the years passed, I kept key pieces of my personality hidden, hoping I could earn the respect of my colleagues. I refrained from sharing my personal stories as they were different from those around me. I grew up in a developing country with a struggling economy and an even more challenging political situation. It was clear that we simply did not share similar experiences.
When I sought help from my senior residents and attending physicians, my feelings were often minimized or invalidated. I was told that “residency is tough” and that I should “man up.” A few even suggested that I mold my personality to fit the box of what a resident physician was supposed to be. I slowly realized that my clothing changed from reds and pinks to greys and blacks because it was “more professional”; my outward appearance faded, as did my once bright sense of humor and affability.
All these issues led to depression and an overwhelming sense of not belonging. A few months later, I was on antidepressants, but the crying in the shower continued. Rotation by rotation, I looked for a specialty that would help me feel like I belonged, and I found that in oncology. My mentor embraced my research ideas; my ethnic background or accent did not matter; we had the same goal, improving the care of our patients with cancer. I got to travel to national and international conferences, presented my research findings, and received a few awards along the way. From the outside, it looked like I was thriving; my mentor often called me a “Rising Star,” but in reality, I was still deeply depressed and trying to fit in every day. My career successes led me to believe that not being myself was the right thing to do. I felt isolated; I was trying to be someone I was not.
A year later, I matched at my top choice oncology fellowship program; the program had the balance I was
looking for between clinical care and research. This meant that I needed to move to the Midwest, further away from family, and to an area of the country with less racial and ethnic diversity. After 2 years on antidepressants and the 10 extra pounds that came with it, my white coat did not fit. My white coat felt like a costume that I would put on every day to fulfill the dream of being a doctor. I would often wake up in the middle of the night exhausted and depressed. I had all the responsibilities of a hematology/ oncology trainee and the additional full-time job of trying to fit in every day; I was using all my energy trying to be someone I was not.
Regardless of my fears, I felt in my element when talking to patients and interacting with my cofellows. Despite having a different skin color and accent, I felt accepted by my patients with cancer. I remember when one of my patients requested to see me while in the emergency room because
“Dr Duma just gets me.” She had been evaluated by the head of the department and attending physicians, but for her, I washer doctor. Tears of happiness accompanied my bus ride to see her; at that moment, I knew I was an oncologist, and oncology was the place I belonged.
The next day, I realized that it was time to be myself: Narjust from Venezuela, a Latina oncologist who was her true self. I searched the bottom of my closet for the last piece of colorful clothing I had saved, a yellow dress. I put on that brightly colored dress for the first time in 5 years and finally felt comfortable being my authentic self; the yellow dress represented freedom and embraced the culture and colors I grew up seeing in my hometown. I finally understood that I brought something special to the table: my unique understanding of the challenges faced by Latinx patients and trainees, my advocacy skills, and my persistence to endure the academic grindstone. Psychotherapy was also an essential part of my recovery; I learned that happiness lived within me as a whole person—hiding my accent, cultural background, and past experiences was also hiding the light and joy inside me.
Along the way, I found colleagues who faced the same challenges and validated that my experiences resulted from an environment that excludes the difference and values homogeneity. This route to self-discovery helped me find my calling to support others in situations similar to mine.3 I learned how to incorporate and celebrate my ethnicity in the world of academic oncology by teaching others the power of cultural humility, diversity, equity, and inclusion. Together with newfound friends and colleagues, I cofounded the #LatinasinMedicine Twitter community for those who face similar burdens during their training and careers. The #LatinasinMedicine community was created to share our stories, embrace our culture, and amplify other Latinas in medicine—to create connections that alleviate the sense of isolation that many of us have experienced and serve as role models to the next generation of Latinas in medicine.
To help drive systemic change, I founded the Duma Laboratory, a research group that focuses on cancer health disparities and discrimination in medical education. Through research, the Duma Laboratory has shown that my experiences are not unique but rather an everyday reality for many international medical graduates and other under-represented groups in medicine. The Duma Laboratory has become a safe environment for many trainees; we seek to change how mentorship works for under-represented groups in oncology, with the hope that the isolation I felt during my training is not something that future physicians will ever have to endure.
After years of depression and self-discovery, my white coat now fits. However, this is not your regular white coat; it has touches of color to embrace my heritage and the ancestors who paved the way for me to be here today. The face of medicine and oncology is changing around the world; young women of color are standing up to demonstrate the strength of our experiences and fuel the change that medical education needs.
For all minority medical students, residents, fellows, and junior faculty, we belong in medicine even during those moments when our identity is tested. Through my journey, I learned that we can and must challenge the status quo. I hope to inspire others to join me in this path of advocating for diversity, equity, and inclusion because the time for change is now. I was finally free the moment I realized I could not be anyone else but myself, a proud Latina in medicine and oncology.
Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, which offers a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org.
I'm your host, Lidia Shapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. And with me today is Dr. Narjust Duma, Associate Director of the Cancer Care Equity Program and Medical Thoracic Oncologist at Dana Farber and an Assistant Professor at Harvard Medical School. We'll be discussing her Art of Oncology article, ‘My White Coat Doesn't Fit.’
Our guest has a consulting or advisory role with AstraZeneca, Pfizer, NeoGenomics Laboratories, Janssen, Bristol Myers Squibb, Medarax, Merck, and Mirati. Our guest has also participated in a speaker's bureau for MJH Life Sciences.
Narjust, welcome to our podcast.
Dr. Narjust Duma: Thank you for the invitation and for letting us share our story.
Dr. Lidia Schapira: It's lovely to have you. So, let's start with a bit of background. Your essay has so many powerful themes, the story of an immigrant in the US, the story of resilience, the story of aggression and bullying as a recipient of such during training, of overcoming this and finding not only meaning, but really being an advocate for a more inclusive and fair culture in the workplace.
So, let's untangle all of these and start with your family. I was interested in reading that you're named after your two grandmothers, Narcisa and Justa. And this is how your parents, both physicians, Colombian and Dominican, gave you your name, and then you were raised in Venezuela. So, tell us a little bit about your family and the values that were passed on in your family.
Dr. Narjust Duma: Thank you for asking. Having my two grandmothers names is something that my mother put a lot of effort into. She was a surgery resident with very limited time to decide to do that. And I don't have a middle name, which is quite unique in Latin America, most people in Latin America have one or two middle names.
So, my mother did that to assure that I will use her piece of art, which is my first name. But little does she know that my grandmothers were going to be such an important part of my life, not only because they're in my name, but also because I am who I am thanks to them.
So, the first part of my name, Narcisa was my grandma who raised me and she gave me the superpower of reading and disconnecting. So, I’m able to read no matter where I am and how loud it can be and disconnect with the world. So, it is often that my assistants need to knock on my door two or three times so, I don't like being scared because I'm able to travel away. That was also very unique because you will find me in the basketball games from high school or other activities with a book because I was able to block that noise. But it also makes very uncomfortable situations for my friends that find it embarrassing that I will pull a book in the basketball game.
And as I grow, thanks to the influence of my grandmothers, I always have these, how can I say, mixed situation, in which they were very old school grandmothers with old school habits and values, and how I'm able to modify that. My grandma told me that you can be a feminist, but you still take care of your house. You can still, you know, cook.
And that taught me that you don't have to pick a side, there is no one stereotype for one or another. Because as my mother being a single mother and a surgeon, my parents divorced early on, told me, ‘Yes, I can be the doctor but I can also be the person that has more than a career that's able to have hobbies.’ I love cooking, and when I'm stressed, I cook. So, I had a grant deadline a few weeks ago and I cooked so much that there was food for days. So, having the names of my grandmothers is very important because I have their values, but I have modified them to the current times.
Dr. Lidia Schapira: Let me ask a little bit about reading. I often ask the guests of this podcast who have written and therefore I know enjoy reading and writing, what their favorite books are or what is currently on their night table. But I'm going to ask you a second question and that is what languages do you read in?
Dr. Narjust Duma: I prefer to read in Spanish. I found that books in Spanish, even if it's a book that originated in English, have these romantic characteristics. And I often tell my editors, ‘Just take into account that I think in Spanish, and write in English’. Because I grew up with Gabrielle Garcia Marquez, and when he describes a street, that's a page of the little things that he describes.
So, that's how I write and that's how I read in a very romantic, elaborate way. The aspects of realistic imagism, which is my favorite genre in literature, and there are so many Latin American and South American writers that I don't think that I am going to run out. And when I run out, I reread the same books. I have read all of Gabrielle Garcia Marquez's books twice, and Borges, too.
It’s the type of stories that allows you to submerge yourself and you imagine yourself wearing those Victorian dresses in the heat of a Colombian street, as you try to understand if, you know, Love in the Time of Cholera, if they were more in love with being in love or what it was happening in the story. And that just gives me happiness on a Sunday morning.
Dr. Lidia Schapira: That's beautiful. I must confess that reading Borges is not easy. So, I totally admire the fact that you have managed to read all of his work. And I think that you're absolutely right, that magical realism is a genre that is incredibly fresh, and perhaps for the work that we do in oncology, it's a wonderful antidote in a way to some of the realities, the very harsh realities that we deal with on a daily basis.
So, let me ask you a little bit about growing up in Venezuela in the 80s, 90s, early aughts. That must have been difficult. Tell us a little bit about that, and your choice of attending medical school.
Dr. Narjust Duma: So, growing up in Venezuela, with a Colombian mother, it was quite a unique perspective because she was very attached to her Colombian roots. So, a lot of the things that happened in the house were very Colombian, but I was in Venezuela.
So, it was a unique characteristic of being from a country but your family is not from there. So, my parents are not from Venezuela, my grandparents either, and I’m Venezuelan because I was born and raised there. So, that brought a unique perspective, right? The music that I played in my house was Colombian music, not Venezuelan music.
So, my family migrated from Colombia to Venezuela due to the challenges in the early 80s with violence and the Medellin, due to the drug cartels. So, we moved to Venezuela for a better future. And growing up in the first years, Venezuela was in a very good position. Oil was at the highest prices. Economically, the country was doing well.
I remember, in my early years, the dollar and the bolivar had the same price. But then little by little I saw how my country deteriorated, and it was very heartbreaking. From a place where the shells were full of food to a place now when there is no food, and you go to the supermarket, and many of them are close. And now you're only limited to buying certain things. And you used to use your federal ID that has an electronic tracking on how much you can buy because of socialism.
So, you're only allowed to buy two kilograms of rice per month, for example, you're only allowed to buy this number of plantains. So, every time I go home, because Venezuela is always going to be my home, it doesn't matter where I am., I see how my country has lost pieces by pieces, which is quite very hard because I had a very good childhood.
I had a unique childhood because I was raised in hospitals. But I had a childhood in which I will play with my friends across the street. We were not worried about being kidnapped. We were not worried about being robbed.
That's one thing that children in Venezuela cannot do right now. Children of doctors – there's a higher risk of being kidnapped as a kid right now if your father is a doctor or your mother. So, my childhood wasn't like that. When I teach my students or talk to my mentees, I’m often selling my country, and saying that's not what it used to be. That's not where I grew up. But every year I saw how it no longer is where I grew up. That place doesn't exist, and sometimes, Lidia, I feel like my imagination may have to fill it out with more good things. But I think it was a good childhood. It's just that nobody in Venezuela is experiencing what I experienced as a kid.
Dr. Lidia Schapira: So, both parents were doctors and you chose to study medicine, was this just right out of high school?
Dr. Narjust Duma: Even before high school, I found myself very connected to patients. So, since I turned 15, my father would give his secretary a month of vacation because that's the month that we fill in.
So, I was the secretary for a month every summer since I was 15 until I was 20. That early exposure allowed me to like get to know these patients and they know I was the daughter, but I was also the secretary. So, I really cherished that.
Growing up in my household, we're a house of service. So, our love language is acts of service. That's how pretty much my grandmas and my parents were. So, in order to be a physician, that's the ultimate act of service. I have wanted to be a doctor since I was 11. I think my mother face horrible gender harassment and sexual harassment as a female in the surgery in the early 80s, that she tried to push me away from medicine. Early on, when I was 11, or 12, being an oil engineer in Venezuela was the career that everybody should have, right?
Like, people were going to the Emirates and moving to different parts of the world and were doing wonderful. So, my mother, based on her experience in the 80s, was pushing me away from it. She's like, ‘You can do other things.’ My father always stayed in the back and said, ‘You can do what you want.’
This is how our parents' experiences affect our future. If I wouldn't be this stubborn, I would probably be an oil engineer today, and I wouldn't be talking to you.
Dr. Lidia Schapira: So, you went to medical school, and then after you graduated, what did you decide to do? Because when I look at what we know about the history there is I think you graduated in '09, and then the story that you write about sort of begins in '16 when you come to New Jersey to do training in the US, but what happened between '09 and '16?
Dr. Narjust Duma: I started residency in 2013. '16 was my fellowship. So, going to medical school was one of the hardest decisions I made because right in 2003 and 2004 was a coup in Venezuela where part of the opposition took over the country for three days, and then the President of the time came back and the country really significantly destabilized after that coup.
Most schools were closed. Entire private industries were closed for a month. And I think for some people, it's hard to understand what happened. Everything closed for a month, McDonald's was closed for a month. There was no Coke because a Coke company was not producing. Everything was closed. The country was just paralyzed.
So, my mother and I, and my family, my father, took into account that we didn't know when medical school would resume in Venezuela. We didn't know if the schools would ever open again. I decided to apply for a scholarship and I left Venezuela at the age of 17 to go to the Dominican Republic for medical school.
Very early on, I noticed that I was going to be a foreigner wherever I go because I left home. And since then, I think I became very resilient because I was 17 and I needed to move forward.
So, that is what happened in 2004. I left everything I knew. I left for the Dominican. I do have family in the Dominican, but it was very hard because even if you speak the same language, the cultures are very different. And then I went to medical school in the Dominican and when I was in the Dominican Republic, I realized I really wanted to do science and be an advocate and focus on vulnerable populations with cancer. So, then I made the decision to come to the United States, I did a year of a research fellowship at Fred Hutchinson, and then I went to residency in 2013.
Dr. Lidia Schapira: I see. And that's when you went to New Jersey, far away from home. And as you tell the story, the experience was awful, in part because of the unkindness and aggression, not only microaggression but outright bullying that you experienced.
In reading the essay, my impression was that the bullying was mostly on two accounts. One was gender. The other was the fact that you were different. In this particular case, it was the ethnicity as a Latin or Hispanic woman. Tell us a little bit about that so we can understand that.
Dr. Narjust Duma: I think what happened is that perfect example of intersectionality because we are now the result of one experience, we’re the result of multiple identities. So many woman have faced gender inequalities in medicine, but when you are from a marginalized group, those inequalities multiply.
I have an accent and clearly a different skin color. I grew up in a family in which you were encouraged to be your true self. My grandmothers and my mother said, ‘You never want to be the quiet woman in the corner because the quiet woman never generates change.’ That's what they said, and I bet there are some who do.
But that intersection of my identities was very challenging because I was seen as inferior just for being a woman and then you multiply being one of the few Latinas you are seen like you are less just because you are - it doesn't matter how many degrees or papers or grants you had done and all, I was the most productive research resident in my residency for two years in a row - but I would still be judged by my identity and not what I have produced, or what I do on my patients' experiences, which were great – the feedback from my patients. It's just because I was the different one.
Dr. Lidia Schapira: When I hear your story about your origins, it seems to me that you came from a very capable loving family, and they basically told you to go conquer the world, and you did. And then you arrive and you’re a productive successful resident, and yet, you are marginalized, as you say. People are really aggressive.
Now that you've had some years that have passed, if you think back, what advice would you give that young Narjust?
Dr. Narjust Duma: My number one advice, would be that, I will tell myself is that I belong, in many instances, I feel like I didn't belong. It makes me question all the decisions to that day because when you're doing a presentation, and I still remember like today, and you're interrupted by someone, just for them to make a comment about your accent, it really brings everything down to your core, like, 'Is my presentation not accurate? Is the information not all right? And why am I here? Why did I left everything I love to be treated like this?'
Dr. Lidia Schapira: Of course. So, from New Jersey, you write in your essay that you really discover your passion for cancer research, and you land in a fellowship with a mentor who is encouraging, and things begin to change for you. Can you tell us a little bit about that phase of your training in your life where you slowly begin to find your voice in the state, that also where you crash, where you find yourself so vulnerable that things really fall apart?
Dr. Narjust Duma: So, when I was a resident, I didn't know exactly - I was interested in oncology, but I wasn't sure if it was for me. So, Dr. Martin Gutierrez at Rutgers in Hackensack is the person who I cold emailed and said, ‘I'm interested in studying gastric cancer in Hispanic patients because I think that patients in the clinic are so young.’
He, without knowing me or having any idea, he trusted me. We still meet. He still follows up with me. He encouraged me. I think him being a Latino made the experience better, too, because I didn't have to explain my experience to him. I didn’t have to explain that. He understood because he went through the same things. And he's like, ‘I got you. Let's follow what you want to do.’
He embraced who I was, and how I put who I was into my research. And thanks to Dr. Gutierrez, I’m at the Mayo Clinic as an international medical grad.
So, finding a place in which my ideas were embraced was very important to allow me to stay in medicine because, Lidia, I can tell you several times, I decided to leave. I was very committed to finding something else to do or just being a researcher and leaving clinical medicine behind.
So, when I went to Mayo, I still followed with that mentor, but I already knew what I wanted to do. I wanted to do cancer health disparities. I wanted to do inclusion and diversity. And that allowed me to develop the career I have now and is having that pathway because I, with my strong personality and everything else, faced this discrimination, and I can imagine for other trainees that may still be facing that or will face that in the future. So, I use the negative aspects to find my calling and do many things I have done after that.
Dr. Lidia Schapira: Speaks to your strengths and your determination. Let's talk a little bit about the people who may also feel different but whose differences may not be so apparent. How do you now as an emerging leader, and as a mentor, make sure that you create an inclusive and safe environment for your younger colleagues and your mentees?
Dr. Narjust Duma: One of the things that resulted was the founding of the Duma Lab, which is a research group that focuses on cancer, health disparities, social justice as a general, and inclusion in medical education.
So, one of the things that I practice every day is cultural humility. I continue to read and remember the principles. I have them as the background on my computer at work. The number one principle in lifelong learning is that we learn from everyone and that we don't know everything and other people's cultures, and subculture, we learn their culture is rich.
So, in every meeting, I remind the team of the principles of cultural humility when somebody is joining the lab. I have one-on-one meetings, and I provide information and videos about cultural humility because the lab has been created as an environment that's safe.
We have a WhatsApp group that is now kind of famous - it’s called The Daily Serotonin. The majority of the members of the lab are part of marginalized groups, not only by gender but race, religion, sexual and gender orientation. So, we created this group to share good and bads, and we provide support.
So, a few weeks ago, a patient made reference to one of their lab member’s body, the patient was being examined and that was quite inappropriate. The member debriefed with the group and we all provided insights on how she had responded, and how she should respond in the future.
That's not only learning from the person that brought the scenario but anybody else feels empowered to stop those microaggressions and stop those inappropriate behaviors that woman particularly face during clinical care.
So, cultural humility, and having this WhatsApp group that provides a place where, first, I remind everybody that's confidential, and a place in which anything is shared has been very successful to create inclusivity in the group.
Dr. Lidia Schapira: You have such energy and I'm amazed by all of the things that you can do and how you have used social connection as a way of bringing people up.
So, can you give our listeners perhaps some tips for how you view creating a flatter culture, one with fewer hierarchies that makes it safer for learners and for those who are practicing oncology? What are three quick things that all of us can do in our work starting this afternoon?
Dr. Narjust Duma: The concept is that we all can be allies. And being an ally doesn't take a lot of time or money because people think that being an ally is a full-time job, it is not.
So, the first one tip will be to bring people with you. Your success is not only yours. It’s a success of your mentees. It’s a success of your colleagues. So, don't see your success as my badge on my shoulder. It’s the badge that goes on everyone. So, bring people in, leave the door open, not only bring them but leave the door open because when you do it helps the next generation.
Two, little things make a difference. I'm going to give you three phrases that I use all the time. When you think somebody has been marginalized in a meeting, bring them up, it takes no time. For example, 'Chenoa, what do you think we can do next?' You're bringing that person to the table.
Two, you can advocate for other women and minorities when they're easily interrupted in a meeting. This takes no time. ‘I’m sorry you interrupted Dr. Duma. Dr. Duma?’ So, that helps.
The third thing is very important. You can connect people. So, one of the things is that I don't have every skill, so I advocate for my mentees and I serve as a connector. I have a mentee that is into bioinformatics. Lidia, that's above my head. I don't understand any of that. So, I was able to connect that person to people that do bioinformatics.
And follow up. My last thing is to follow up with your people because they need you.
Dr. Lidia Schapira: Well, I'm very glad that you're not an oil engineer in the Emirates. I'm sure your family is incredibly proud. I hope that you're happy where you are. We started a little bit about where you started, I'd like to end with your idea of where you imagine yourself 10 years from now?
Dr. Narjust Duma: That is a question I don't have an answer prepared for. I guess my career development plans I think I want to be in a place where I look back and I can see that the careers of my mentees being successful. And I think that we measure my success based not on myself, I would measure my success in 10 years based on where my mentees are. And medical education is a more inclusive place. That will be the two things I want to see in 10 years.
In the personal aspect, I don't know if we have art, don't know if we have those grants as long as my mentees are in a better place.
Dr. Lidia Schapira: It has been such a pleasure to have this conversation. Thank you so much, Narjust.
Dr. Narjust Duma: Thank you.
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Narrator: My White Coat Doesn’t Fit, by Narjust Duma, MD (10.1200/JCO.21.02601)

There I was, crying once again all the way from the hospital’s parking lot to my apartment, into the shower, and while trying to fall asleep. This had become the norm during my internal medicine residency. For years, I tried hard every day to be someone else in order to fit in. It started with off-hand comments like “Look at her red shoes,” “You are so colorful,” and “You are so Latina.” These later escalated to being interrupted during presentations with comments about my accent, being told that my medical school training in my home country was inferior to my US colleagues, and being assigned all Spanish-speaking patients because “They are your people.” Some of those comments and interactions were unintentionally harmful but led to feelings of isolation, and over time, I began to feel like an outsider.

I came to the United States with the dream of becoming a physician investigator, leaving behind family, friends, and everything I knew. Over time, I felt pigeonholed into a constricting stereotype due to my ethnicity and accent. Back home, I was one of many, but in this new setting, I was one of a few, and in many instances, I was the only Latina in the room.

I was raised by divorced physician parents in Venezuela; my childhood years were often spent in the clinic waiting for my mother to see that one last patient or outside the operating room waiting for my father to take me home. The hospital felt like my second home, growing up snacking on Graham crackers and drinking the infamous hospital’s 1% orange juice. “She was raised in a hospital,” my mother used to say. Sadly, that feeling of being at home in the hospital changed during medical training as I felt isolated and like I did not belong, making me question my dream and the decision to come to the United States. I remember calling my family and crying as I asked “Why did I leave?” “Why didn’t you stop me from coming here?” and seeking permission to return home. I felt like I was disappointing them as I was no longer the vivid, confident young woman who left her home country to pursue a bright future.

I remember one colleague, Valerie (pseudonym), from Connecticut. Valerie attended medical school in the United States, did not have an accent, and was familiar with the American health care system. She understood how the senior resident-intern relationship functioned, a hierarchy that continually confused me. Over the following weeks, I took a closer look at how my colleagues and other hospital staff interacted with Valerie. I noticed that people did not comment about her clothing or personality. She was “normal” and fit in. I remember my senior resident asking me, “Narjust, why can’t you be more like Valerie?” Ashamed, I mumbled that I would try and then ran to the bathroom to cry alone. That interaction was a turning point for me; I got the message. I needed to change; I needed to stop being who I was to be accepted.

As the years passed, I kept key pieces of my personality hidden, hoping I could earn the respect of my colleagues. I refrained from sharing my personal stories as they were different from those around me. I grew up in a developing  country with a struggling economy and an even more challenging political situation. It was clear that we simply did not share similar experiences.

When I sought help from my senior residents and attending physicians, my feelings were often minimized or invalidated. I was told that “residency is tough” and that I should “man up.” A few even suggested that I mold my personality to fit the box of what a resident physician was supposed to be. I slowly realized that my clothing changed from reds and pinks to greys and blacks because it was “more professional”; my outward appearance faded, as did my once bright sense of humor and affability.

All these issues led to depression and an overwhelming sense of not belonging. A few months later, I was on antidepressants, but the crying in the shower continued. Rotation by rotation, I looked for a specialty that would help me feel like I belonged, and I found that in oncology. My mentor embraced my research ideas; my ethnic background or accent did not matter; we had the same goal, improving the care of our patients with cancer. I got to travel to national and international conferences, presented my research findings, and received a few awards along the way. From the outside, it looked like I was thriving; my mentor often called me a “Rising Star,” but in reality, I was still deeply depressed and trying to fit in every day. My career successes led me to believe that not being myself was the right thing to do. I felt isolated; I was trying to be someone I was not.

A year later, I matched at my top choice oncology fellowship program; the program had the balance I was

looking for between clinical care and research. This meant that I needed to move to the Midwest, further away from family, and to an area of the country with less racial and ethnic diversity. After 2 years on antidepressants and the 10 extra pounds that came with it, my white coat did not fit. My white coat felt like a costume that I would put on every day to fulfill the dream of being a doctor. I would often wake up in the middle of the night exhausted and depressed. I had all the responsibilities of a hematology/ oncology trainee and the additional full-time job of trying to fit in every day; I was using all my energy trying to be someone I was not.

Regardless of my fears, I felt in my element when talking to patients and interacting with my cofellows. Despite having a different skin color and accent, I felt accepted by my patients with cancer. I remember when one of my patients requested to see me while in the emergency room because

“Dr Duma just gets me.” She had been evaluated by the head of the department and attending physicians, but for her, I washer doctor. Tears of happiness accompanied my bus ride to see her; at that moment, I knew I was an oncologist, and oncology was the place I belonged.

The next day, I realized that it was time to be myself: Narjust from Venezuela, a Latina oncologist who was her true self. I searched the bottom of my closet for the last piece of colorful clothing I had saved, a yellow dress. I put on that brightly colored dress for the first time in 5 years and finally felt comfortable being my authentic self; the yellow dress represented freedom and embraced the culture and colors I grew up seeing in my hometown. I finally understood that I brought something special to the table: my unique understanding of the challenges faced by Latinx patients and trainees, my advocacy skills, and my persistence to endure the academic grindstone. Psychotherapy was also an essential part of my recovery; I learned that happiness lived within me as a whole person—hiding my accent, cultural background, and past experiences was also hiding the light and joy inside me.

Along the way, I found colleagues who faced the same challenges and validated that my experiences resulted from an environment that excludes the difference and values homogeneity. This route to self-discovery helped me find my calling to support others in situations similar to mine.3 I learned how to incorporate and celebrate my ethnicity in the world of academic oncology by teaching others the power of cultural humility, diversity, equity, and inclusion. Together with newfound friends and colleagues, I cofounded the #LatinasinMedicine Twitter community for those who face similar burdens during their training and careers. The #LatinasinMedicine community was created to share our stories, embrace our culture, and amplify other Latinas in medicine—to create connections that alleviate the sense of isolation that many of us have experienced and serve as role models to the next generation of Latinas in medicine.

To help drive systemic change, I founded the Duma Laboratory, a research group that focuses on cancer health disparities and discrimination in medical education. Through research, the Duma Laboratory has shown that my experiences are not unique but rather an everyday reality for many international medical graduates and other under-represented groups in medicine. The Duma Laboratory has become a safe environment for many trainees; we seek to change how mentorship works for under-represented groups in oncology, with the hope that the isolation I felt during my training is not something that future physicians will ever have to endure.

After years of depression and self-discovery, my white coat now fits. However, this is not your regular white coat; it has touches of color to embrace my heritage and the ancestors who paved the way for me to be here today. The face of medicine and oncology is changing around the world; young women of color are standing up to demonstrate the strength of our experiences and fuel the change that medical education needs.

For all minority medical students, residents, fellows, and junior faculty, we belong in medicine even during those moments when our identity is tested. Through my journey, I learned that we can and must challenge the status quo. I hope to inspire others to join me in this path of advocating for diversity, equity, and inclusion because the time for change is now. I was finally free the moment I realized I could not be anyone else but myself, a proud Latina in medicine and oncology.

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, which offers a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org.

I'm your host, Lidia Shapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. And with me today is Dr. Narjust Duma, Associate Director of the Cancer Care Equity Program and Medical Thoracic Oncologist at Dana Farber and an Assistant Professor at Harvard Medical School. We'll be discussing her Art of Oncology article, ‘My White Coat Doesn't Fit.’

Our guest has a consulting or advisory role with AstraZeneca, Pfizer, NeoGenomics Laboratories, Janssen, Bristol Myers Squibb, Medarax, Merck, and Mirati. Our guest has also participated in a speaker's bureau for MJH Life Sciences.

Narjust, welcome to our podcast.

Dr. Narjust Duma: Thank you for the invitation and for letting us share our story.

Dr. Lidia Schapira: It's lovely to have you. So, let's start with a bit of background. Your essay has so many powerful themes, the story of an immigrant in the US, the story of resilience, the story of aggression and bullying as a recipient of such during training, of overcoming this and finding not only meaning, but really being an advocate for a more inclusive and fair culture in the workplace.

So, let's untangle all of these and start with your family. I was interested in reading that you're named after your two grandmothers, Narcisa and Justa. And this is how your parents, both physicians, Colombian and Dominican, gave you your name, and then you were raised in Venezuela. So, tell us a little bit about your family and the values that were passed on in your family.

Dr. Narjust Duma: Thank you for asking. Having my two grandmothers names is something that my mother put a lot of effort into. She was a surgery resident with very limited time to decide to do that. And I don't have a middle name, which is quite unique in Latin America, most people in Latin America have one or two middle names.

So, my mother did that to assure that I will use her piece of art, which is my first name. But little does she know that my grandmothers were going to be such an important part of my life, not only because they're in my name, but also because I am who I am thanks to them.

So, the first part of my name, Narcisa was my grandma who raised me and she gave me the superpower of reading and disconnecting. So, I’m able to read no matter where I am and how loud it can be and disconnect with the world. So, it is often that my assistants need to knock on my door two or three times so, I don't like being scared because I'm able to travel away. That was also very unique because you will find me in the basketball games from high school or other activities with a book because I was able to block that noise. But it also makes very uncomfortable situations for my friends that find it embarrassing that I will pull a book in the basketball game.

And as I grow, thanks to the influence of my grandmothers, I always have these, how can I say, mixed situation, in which they were very old school grandmothers with old school habits and values, and how I'm able to modify that. My grandma told me that you can be a feminist, but you still take care of your house. You can still, you know, cook.

And that taught me that you don't have to pick a side, there is no one stereotype for one or another. Because as my mother being a single mother and a surgeon, my parents divorced early on, told me, ‘Yes, I can be the doctor but I can also be the person that has more than a career that's able to have hobbies.’ I love cooking, and when I'm stressed, I cook. So, I had a grant deadline a few weeks ago and I cooked so much that there was food for days. So, having the names of my grandmothers is very important because I have their values, but I have modified them to the current times.

Dr. Lidia Schapira: Let me ask a little bit about reading. I often ask the guests of this podcast who have written and therefore I know enjoy reading and writing, what their favorite books are or what is currently on their night table. But I'm going to ask you a second question and that is what languages do you read in?

Dr. Narjust Duma: I prefer to read in Spanish. I found that books in Spanish, even if it's a book that originated in English, have these romantic characteristics. And I often tell my editors, ‘Just take into account that I think in Spanish, and write in English’. Because I grew up with Gabrielle Garcia Marquez, and when he describes a street, that's a page of the little things that he describes.

So, that's how I write and that's how I read in a very romantic, elaborate way. The aspects of realistic imagism, which is my favorite genre in literature, and there are so many Latin American and South American writers that I don't think that I am going to run out. And when I run out, I reread the same books. I have read all of Gabrielle Garcia Marquez's books twice, and Borges, too.

It’s the type of stories that allows you to submerge yourself and you imagine yourself wearing those Victorian dresses in the heat of a Colombian street, as you try to understand if, you know, Love in the Time of Cholera, if they were more in love with being in love or what it was happening in the story. And that just gives me happiness on a Sunday morning.

Dr. Lidia Schapira: That's beautiful. I must confess that reading Borges is not easy. So, I totally admire the fact that you have managed to read all of his work. And I think that you're absolutely right, that magical realism is a genre that is incredibly fresh, and perhaps for the work that we do in oncology, it's a wonderful antidote in a way to some of the realities, the very harsh realities that we deal with on a daily basis.

So, let me ask you a little bit about growing up in Venezuela in the 80s, 90s, early aughts. That must have been difficult. Tell us a little bit about that, and your choice of attending medical school.

Dr. Narjust Duma: So, growing up in Venezuela, with a Colombian mother, it was quite a unique perspective because she was very attached to her Colombian roots. So, a lot of the things that happened in the house were very Colombian, but I was in Venezuela.

So, it was a unique characteristic of being from a country but your family is not from there. So, my parents are not from Venezuela, my grandparents either, and I’m Venezuelan because I was born and raised there. So, that brought a unique perspective, right? The music that I played in my house was Colombian music, not Venezuelan music.

So, my family migrated from Colombia to Venezuela due to the challenges in the early 80s with violence and the Medellin, due to the drug cartels. So, we moved to Venezuela for a better future. And growing up in the first years, Venezuela was in a very good position. Oil was at the highest prices. Economically, the country was doing well.

I remember, in my early years, the dollar and the bolivar had the same price. But then little by little I saw how my country deteriorated, and it was very heartbreaking. From a place where the shells were full of food to a place now when there is no food, and you go to the supermarket, and many of them are close. And now you're only limited to buying certain things. And you used to use your federal ID that has an electronic tracking on how much you can buy because of socialism.

So, you're only allowed to buy two kilograms of rice per month, for example, you're only allowed to buy this number of plantains. So, every time I go home, because Venezuela is always going to be my home, it doesn't matter where I am., I see how my country has lost pieces by pieces, which is quite very hard because I had a very good childhood.

I had a unique childhood because I was raised in hospitals. But I had a childhood in which I will play with my friends across the street. We were not worried about being kidnapped. We were not worried about being robbed.

That's one thing that children in Venezuela cannot do right now. Children of doctors – there's a higher risk of being kidnapped as a kid right now if your father is a doctor or your mother. So, my childhood wasn't like that. When I teach my students or talk to my mentees, I’m often selling my country, and saying that's not what it used to be. That's not where I grew up. But every year I saw how it no longer is where I grew up. That place doesn't exist, and sometimes, Lidia, I feel like my imagination may have to fill it out with more good things. But I think it was a good childhood. It's just that nobody in Venezuela is experiencing what I experienced as a kid.

Dr. Lidia Schapira: So, both parents were doctors and you chose to study medicine, was this just right out of high school?

Dr. Narjust Duma: Even before high school, I found myself very connected to patients. So, since I turned 15, my father would give his secretary a month of vacation because that's the month that we fill in.

So, I was the secretary for a month every summer since I was 15 until I was 20. That early exposure allowed me to like get to know these patients and they know I was the daughter, but I was also the secretary. So, I really cherished that.

Growing up in my household, we're a house of service. So, our love language is acts of service. That's how pretty much my grandmas and my parents were. So, in order to be a physician, that's the ultimate act of service. I have wanted to be a doctor since I was 11. I think my mother face horrible gender harassment and sexual harassment as a female in the surgery in the early 80s, that she tried to push me away from medicine. Early on, when I was 11, or 12, being an oil engineer in Venezuela was the career that everybody should have, right?

Like, people were going to the Emirates and moving to different parts of the world and were doing wonderful. So, my mother, based on her experience in the 80s, was pushing me away from it. She's like, ‘You can do other things.’ My father always stayed in the back and said, ‘You can do what you want.’

This is how our parents' experiences affect our future. If I wouldn't be this stubborn, I would probably be an oil engineer today, and I wouldn't be talking to you.

Dr. Lidia Schapira: So, you went to medical school, and then after you graduated, what did you decide to do? Because when I look at what we know about the history there is I think you graduated in '09, and then the story that you write about sort of begins in '16 when you come to New Jersey to do training in the US, but what happened between '09 and '16?

Dr. Narjust Duma: I started residency in 2013. '16 was my fellowship. So, going to medical school was one of the hardest decisions I made because right in 2003 and 2004 was a coup in Venezuela where part of the opposition took over the country for three days, and then the President of the time came back and the country really significantly destabilized after that coup.

Most schools were closed. Entire private industries were closed for a month. And I think for some people, it's hard to understand what happened. Everything closed for a month, McDonald's was closed for a month. There was no Coke because a Coke company was not producing. Everything was closed. The country was just paralyzed.

So, my mother and I, and my family, my father, took into account that we didn't know when medical school would resume in Venezuela. We didn't know if the schools would ever open again. I decided to apply for a scholarship and I left Venezuela at the age of 17 to go to the Dominican Republic for medical school.

Very early on, I noticed that I was going to be a foreigner wherever I go because I left home. And since then, I think I became very resilient because I was 17 and I needed to move forward.

So, that is what happened in 2004. I left everything I knew. I left for the Dominican. I do have family in the Dominican, but it was very hard because even if you speak the same language, the cultures are very different. And then I went to medical school in the Dominican and when I was in the Dominican Republic, I realized I really wanted to do science and be an advocate and focus on vulnerable populations with cancer. So, then I made the decision to come to the United States, I did a year of a research fellowship at Fred Hutchinson, and then I went to residency in 2013.

Dr. Lidia Schapira: I see. And that's when you went to New Jersey, far away from home. And as you tell the story, the experience was awful, in part because of the unkindness and aggression, not only microaggression but outright bullying that you experienced.

In reading the essay, my impression was that the bullying was mostly on two accounts. One was gender. The other was the fact that you were different. In this particular case, it was the ethnicity as a Latin or Hispanic woman. Tell us a little bit about that so we can understand that.

Dr. Narjust Duma: I think what happened is that perfect example of intersectionality because we are now the result of one experience, we’re the result of multiple identities. So many woman have faced gender inequalities in medicine, but when you are from a marginalized group, those inequalities multiply.

I have an accent and clearly a different skin color. I grew up in a family in which you were encouraged to be your true self. My grandmothers and my mother said, ‘You never want to be the quiet woman in the corner because the quiet woman never generates change.’ That's what they said, and I bet there are some who do.

But that intersection of my identities was very challenging because I was seen as inferior just for being a woman and then you multiply being one of the few Latinas you are seen like you are less just because you are - it doesn't matter how many degrees or papers or grants you had done and all, I was the most productive research resident in my residency for two years in a row - but I would still be judged by my identity and not what I have produced, or what I do on my patients' experiences, which were great – the feedback from my patients. It's just because I was the different one.

Dr. Lidia Schapira: When I hear your story about your origins, it seems to me that you came from a very capable loving family, and they basically told you to go conquer the world, and you did. And then you arrive and you’re a productive successful resident, and yet, you are marginalized, as you say. People are really aggressive.

Now that you've had some years that have passed, if you think back, what advice would you give that young Narjust?

Dr. Narjust Duma: My number one advice, would be that, I will tell myself is that I belong, in many instances, I feel like I didn't belong. It makes me question all the decisions to that day because when you're doing a presentation, and I still remember like today, and you're interrupted by someone, just for them to make a comment about your accent, it really brings everything down to your core, like, 'Is my presentation not accurate? Is the information not all right? And why am I here? Why did I left everything I love to be treated like this?'

Dr. Lidia Schapira: Of course. So, from New Jersey, you write in your essay that you really discover your passion for cancer research, and you land in a fellowship with a mentor who is encouraging, and things begin to change for you. Can you tell us a little bit about that phase of your training in your life where you slowly begin to find your voice in the state, that also where you crash, where you find yourself so vulnerable that things really fall apart?

Dr. Narjust Duma: So, when I was a resident, I didn't know exactly - I was interested in oncology, but I wasn't sure if it was for me. So, Dr. Martin Gutierrez at Rutgers in Hackensack is the person who I cold emailed and said, ‘I'm interested in studying gastric cancer in Hispanic patients because I think that patients in the clinic are so young.’

He, without knowing me or having any idea, he trusted me. We still meet. He still follows up with me. He encouraged me. I think him being a Latino made the experience better, too, because I didn't have to explain my experience to him. I didn’t have to explain that. He understood because he went through the same things. And he's like, ‘I got you. Let's follow what you want to do.’

He embraced who I was, and how I put who I was into my research. And thanks to Dr. Gutierrez, I’m at the Mayo Clinic as an international medical grad.

So, finding a place in which my ideas were embraced was very important to allow me to stay in medicine because, Lidia, I can tell you several times, I decided to leave. I was very committed to finding something else to do or just being a researcher and leaving clinical medicine behind.

So, when I went to Mayo, I still followed with that mentor, but I already knew what I wanted to do. I wanted to do cancer health disparities. I wanted to do inclusion and diversity. And that allowed me to develop the career I have now and is having that pathway because I, with my strong personality and everything else, faced this discrimination, and I can imagine for other trainees that may still be facing that or will face that in the future. So, I use the negative aspects to find my calling and do many things I have done after that.

Dr. Lidia Schapira: Speaks to your strengths and your determination. Let's talk a little bit about the people who may also feel different but whose differences may not be so apparent. How do you now as an emerging leader, and as a mentor, make sure that you create an inclusive and safe environment for your younger colleagues and your mentees?

Dr. Narjust Duma: One of the things that resulted was the founding of the Duma Lab, which is a research group that focuses on cancer, health disparities, social justice as a general, and inclusion in medical education.

So, one of the things that I practice every day is cultural humility. I continue to read and remember the principles. I have them as the background on my computer at work. The number one principle in lifelong learning is that we learn from everyone and that we don't know everything and other people's cultures, and subculture, we learn their culture is rich.

So, in every meeting, I remind the team of the principles of cultural humility when somebody is joining the lab. I have one-on-one meetings, and I provide information and videos about cultural humility because the lab has been created as an environment that's safe.

We have a WhatsApp group that is now kind of famous - it’s called The Daily Serotonin. The majority of the members of the lab are part of marginalized groups, not only by gender but race, religion, sexual and gender orientation. So, we created this group to share good and bads, and we provide support.

So, a few weeks ago, a patient made reference to one of their lab member’s body, the patient was being examined and that was quite inappropriate. The member debriefed with the group and we all provided insights on how she had responded, and how she should respond in the future.

That's not only learning from the person that brought the scenario but anybody else feels empowered to stop those microaggressions and stop those inappropriate behaviors that woman particularly face during clinical care.

So, cultural humility, and having this WhatsApp group that provides a place where, first, I remind everybody that's confidential, and a place in which anything is shared has been very successful to create inclusivity in the group.

Dr. Lidia Schapira: You have such energy and I'm amazed by all of the things that you can do and how you have used social connection as a way of bringing people up.

So, can you give our listeners perhaps some tips for how you view creating a flatter culture, one with fewer hierarchies that makes it safer for learners and for those who are practicing oncology? What are three quick things that all of us can do in our work starting this afternoon?

Dr. Narjust Duma: The concept is that we all can be allies. And being an ally doesn't take a lot of time or money because people think that being an ally is a full-time job, it is not.

So, the first one tip will be to bring people with you. Your success is not only yours. It’s a success of your mentees. It’s a success of your colleagues. So, don't see your success as my badge on my shoulder. It’s the badge that goes on everyone. So, bring people in, leave the door open, not only bring them but leave the door open because when you do it helps the next generation.

Two, little things make a difference. I'm going to give you three phrases that I use all the time. When you think somebody has been marginalized in a meeting, bring them up, it takes no time. For example, 'Chenoa, what do you think we can do next?' You're bringing that person to the table.

Two, you can advocate for other women and minorities when they're easily interrupted in a meeting. This takes no time. ‘I’m sorry you interrupted Dr. Duma. Dr. Duma?’ So, that helps.

The third thing is very important. You can connect people. So, one of the things is that I don't have every skill, so I advocate for my mentees and I serve as a connector. I have a mentee that is into bioinformatics. Lidia, that's above my head. I don't understand any of that. So, I was able to connect that person to people that do bioinformatics.

And follow up. My last thing is to follow up with your people because they need you.

Dr. Lidia Schapira: Well, I'm very glad that you're not an oil engineer in the Emirates. I'm sure your family is incredibly proud. I hope that you're happy where you are. We started a little bit about where you started, I'd like to end with your idea of where you imagine yourself 10 years from now?

Dr. Narjust Duma: That is a question I don't have an answer prepared for. I guess my career development plans I think I want to be in a place where I look back and I can see that the careers of my mentees being successful. And I think that we measure my success based not on myself, I would measure my success in 10 years based on where my mentees are. And medical education is a more inclusive place. That will be the two things I want to see in 10 years.

In the personal aspect, I don't know if we have art, don't know if we have those grants as long as my mentees are in a better place.

Dr. Lidia Schapira: It has been such a pleasure to have this conversation. Thank you so much, Narjust.

Dr. Narjust Duma: Thank you.

Dr. Lidia Schapira: Until next time, thank you for listening to this JCO’s Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen.

While you're there, be sure to subscribe so you never miss an episode of JCO’s Cancer Stories: The Art of Oncology podcast. This is just one of many of ASCO’s podcasts. You can find all of the shows at podcast.asco.org.

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"Cancer and Armed Conflict: Crossing Realities," by Tamamyan, et al: the story of a young patient with cancer from Nagorno-Karabakh Republic and his thoughts and sufferings during the war in 2020.

TRANSCRIPT

Narrator: Cancer and Armed Conflict: Crossing Realities, by Alisa Kamalyan, MSc, Yeva Margaryan, MD, MPH, Jemma Arakelyan, MD, Liana Safaryan, MD, Gevorg Tamamyan, MD, MSc, DSc, and Stella Arakelyan, MD, MPH, MscIH, PhD (10.1200/JCO.22.00663)

In 2007, Armen, a 6-year-old boy from a village in the mountainous Nagorno-Karabakh Republic (NKR), was diagnosed with Hodgkin lymphoma. NKR is a de facto independent state located in the South Caucasus which has historically been inhabited by Armenians and declared its independence after the collapse of Soviet Union in 1991. Armen’s hometown had a small clinic offering only routine health care services. To receive treatment for lymphoma, he and his family had to travel 350 kms to the Hematology Center in Yerevan, the capital of Armenia. The journey was long and exhausting, but every visit to the Hematology Center filled him with hope, and, ultimately, he achieved a complete remission.

Thirteen years later, Armen, now a young man, returned to the Hematology Center for evaluation of rapid weight loss, persistent pain, and chronic fatigue and was diagnosed with osteosarcoma. First-line chemotherapy and surgery were ineffective, as was second-line therapy with high-dose methotrexate, doxorubicin, and cisplatin. The tumor was growing and spreading rapidly, causing unbearable pain.

Throughout the course of his disease, Armen kept a diary. Recently, his family shared his journal with us, hoping to give a voice to Armen and other young patients with cancer struggling with physical and emotional distress along with overwhelming existential angst.

“In the hospital I had dreams which I could not understand. In one of the dreams, it was midnight, and I knew that I was going to die in 3 hours, but time was running backward, which meant that I was going to die at 8 pm … In another dream, I was undergoing a course of chemotherapy when my phone rang, the call was from Hell. I picked up the phone, and it was one of my relatives from Nagorno-Karabakh who is no longer alive.

But you are dead …, I said to her, surprised.

How are you, my dear? She replied.

Once I hung up the phone, a man dressed in black sat down next to me, made the sign of the cross, and then disappeared …”

At the time, there were no clinical trials available for patients with osteosarcoma in Armenia and his family could not afford to take Armen abroad to receive any experimental therapy, so, after exhausting all available treatment options, Armen returned home to live out his days in the village that helped raise him. We knew that his home environment would provide the support he needed as his cancer journey came to its tragic end. We hoped for his comfort, safety, and peace among those who loved him.

On the morning of September 27, 2020, Armen awoke in a panic, distressed by the loud explosions of bombs dropped on his village as the war between the NKR and Azerbaijan erupted. This conflict, coinciding with the rapid spread of COVID-19 in NKR and Armenia, interrupted access to cancer care and essential palliative medications. Armen was bedridden with intolerable pain and a dwindling supply of analgesics. The encroaching sounds of high-intensity blasts further amplified his anguish and suffering.

Armen’s psychological trauma resulted in nightmares and chronic anxiety as evidenced by his diary entries.

“My house keeps shaking with each explosion, resonating like a high-scale earthquake. Soon, the blasts will shatter all the windows in my house” (October 1, 2020). “Our electricity, heating, and water supplies are cut off. My supply of painkillers is running out” (October 9, 2020). “Don’t think about death– think about the future…”

Within weeks, the Nagorno-Karabakh conflict escalated, destroying homes, healthcare clinics, hospitals, and schools, resulting in massive population displacement and hundreds of civilians, including health care providers, being killed or wounded. Given these dire circumstances and Armen’s worsening pain and weakness, Armen’s family sought refuge in Armenia, where his battle with cancer ultimately ended.

After the war ended on November 9, 2020, Armen’s family took him back home to be laid to eternal rest. This had been his last wish. Armen was a fearless soul. He was a fighter who had already survived cancer once and continued his fight with a smile on his face, giving hope to many of our other patients and staff. But the day the Azeris attacked his home, the smile left his face forever.

For our health care team and other colleagues, the 44 days of the Nagorno-Karabakh war caused a psychosocial and emotional crisis. We could not concentrate on our work. Hundreds of soldiers were being killed daily, and many colleagues felt compelled to leave the cancer wards to join frontline military health care workers. With increasing numbers of surgeons, anesthesiologists, and nurses traveling to the NKR or bordering regions of Armenia, we experienced acute staff shortages, undermining the provision of quality care to our patients. COVID-19, the main health care concern for the rest of the world, was no longer our priority, even as the incidence increased 8-fold during the war.1 The vicious cycle of war and pandemic was tormented as we tried to balance our own emotions and fears while continuing to care for and support our patients with cancer.

Armen’s story provides only a glimpse of what people with terminal cancer and the health care workforce experience in resource-limited settings affected by war. Today, around half of the world’s population lives in countries affected by war, with predictions that cancer will disproportionately affect these regions in the coming decades. Because of multifactorial resource limitations, patients with cancer from these areas are usually diagnosed in advanced stages of the disease when palliation is the only viable option for care.

Worldwide, an estimated 78% of adults and 98% of children in need of palliative care reside in resource-limited regions. A third of adults needing palliative care services are patients with cancer and 80% of them live with moderate or severe chronic pain. Despite these data, only 10% of the world’s overall morphine consumption occurs in resource limited regions. The provision of palliative care services is

even more strained by armed conflict. Recently, the World Health Organization reported that palliative care was available in less than two thirds of Syrian health care facilities and that all cancer centers surveyed in Syria lacked immediate-release oral morphine and trained palliative cancer care staff.

Currently, we are witnessing an escalating war in Ukraine. The images from this and any new conflict around the world bring back our own wartime experiences with haunting clarity. The desperation we felt trying to care for the most vulnerable patients during lethal and chaotic times will never leave us. How many children are now writing tales of death in their journals? How many villages and families are being shattered, unable to provide last days of peace and comfort to their sick and dying loved ones?

Despite recent initiatives to include oncologic and palliative care contingencies in humanitarian responses to crisis, they continue to remain a relatively low priority and have been minimally integrated into emergency response plans during armed conflicts. Protocols detailing how to provide basic care to patients with cancer and maintain supplies of essential medications are yet to be fully developed. We urge the international community to take action to address the existing obstacles to cancer care delivery in conflict affected regions to mitigate the adverse impact of cancer and armed conflict on our most vulnerable patients.

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, which offers a range of educational and scientific content and enriching insights into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org.

I'm your host, Lidia Schapira, associate editor for Art of Oncology and Professor of Medicine at Stanford. And with me today is Dr. Gevorg Tamamyan, Chairman and Professor of the Department of Pediatric Oncology and Hematology at Yerevan State Medical University, head of the Pediatric Cancer and Blood Disorders Centers of Armenia, and Chairman of the Board of the Institute of Cancer and Crisis. We will be discussing his Art of Oncology article, ‘Cancer and Armed Conflict Crossing Realities.’ Our guest has travel, accommodation, and expenses from Roche.

Gevorg, welcome to our podcast.

Dr. Gevorg Tamamyan: Thank you! Thank you very much, Dr. Schapira, for the invitation and for this opportunity to speak with you.

Dr. Lidia Schapira: It is our pleasure. Can you tell our listeners a little bit about the origin of this narrative? How your team come together to tell the story now?

Dr. Gevorg Tamamyan: So, living in a region where every day you face not only - and being an oncologist in the meantime - facing death not only from cancer but also from the war, it makes you think about cancer from a different perspective.

During my not-so-long life, I experienced three wars. The second one was a little bit shorter, but the first one was quite a long one. I was a young boy at the school age and the second one, the large one, was recently in 2020.

Later on, being already an oncologist, when every day you are walking in between life and death and your everyday work is dedicated to saving one more life, sometimes you realize that with one bomb people can kill hundreds and thousands.

So, having this on my mind, I started exploring the field a few years ago, even not knowing that a new war is going to begin in 2020. And we wrote an editorial in Nature Cancer Reviews, I think it was 2019, if I'm not mistaken, about how the war affects cancer patients and cancer care in general. And then in 2020, when we had this sad experience, then we thought that we must express our feelings and reveal what happened, what happens with cancer patients during the war situation. And just recently, of course, there is a new war in the world and we see all this struggling every day. So, unfortunately, this topic does not lose its actuality, I would say.

Dr. Lidia Schapira: You chose to tell the story of a young boy who first came to your major academic center in Armenia at age 6, and you treated and cured him of Hodgkin's lymphoma. And then he returns as a young adult, 19 years old, with an osteosarcoma that you treated. But unfortunately, treatment was not curative, and he goes back to his village and needs to receive palliative care but is suffering now in 2020 with the war in NKR. Can you tell our readers a little bit about the Nagorno-Karabakh war and how it affected your team and the care you provided to children and young adults with cancer?

Dr. Gevorg Tamamyan: So, Nagorno-Karabakh Republic is located in South Caucasus. It's historically inhabited with Armenians and it has been a land for wars for many years.

The first war, what I observed, started in the late 1980s. I was just born a few years ago and I cannot clearly say what happened, but I know from the history definitely. There were massacres of Armenians and the war erupted. But for many years, for three decades, the situation was unstable.

And during the COVID 19 pandemic, Nagorno-Karabakh Republic was attacked by Azerbaijan, supported by Turkey. And just to kind of illustrate what the situation is, there are like 100- 150,000 people residing there. So, this is a small country. It was attacked and there were thousands of people killed and tens of thousands displaced. So, this was the sad reality, what we have seen, of course.

One day I was in Stepanakert, the capital of the Nagorno-Karabakh Republic when bombs were falling on the civilian buildings. I was on the ground floor of the hospital, and I was seeing how these wounded people, civilians, were coming to the hospital. It was really, I mean, my English is very poor to describe all this situation, but back in the hospital, we had a lot of patients from Nagorno-Karabakh and we were seeing their struggles. It was not only from cancer. Some people were losing part of their families, and some of their family members were at the worst stage. And kids, I mean, there was no smile on the kids' faces. It's difficult to describe.

I think it happens with every war, anywhere in the world. And we decided to describe this young boy's story and through this story, to deliver the message about the war, about cancer, and about how patients with cancer struggle during this crisis and these difficult times.

Dr. Lidia Schapira: You tell in your story very movingly how difficult it was for this young man to run out of his pain medication, to also run out of all of the sources of delivery of palliative care. And also, you tell us a little bit about how this made your team feel, that you were struggling with the war, you were struggling with this idea that you couldn't relieve the symptoms and pain of your patients.

Tell us a little bit about how your team struggled through this and what helped you as you went about your work every day?

Dr. Gevorg Tamamyan: Our hospital is a major hospital not only for pediatric cancer. We have the only pediatric cancer center located in the hospital, but also our center, the hematology center, where our pediatric cancer center is located, is the major and the main blood bank.

So, we were kind of primarily involved in saving patients' lives through the blood bank, of course, because all the people were coming to donate the blood and we were sending this blood to different hospitals. And I must confess that this pain medication and palliative care is an issue not only during the war but also during peacetime in many resource-limited settings. But during the war it becomes dramatic. And for the people living in the war area, in the region affected by conflicts, it's almost impossible for them to receive this treatment.

I've seen the stories from Syria, back, let's say ten years ago, photos from the hospitals, and photos of kids who were not able to receive the treatment. Let's say a kid with lymphoma with all the chances to get cured and he or she is not receiving the medications because there is a war, because people fight, and people are dying and kids are dying in pain because they are not able to receive their opioids, their painkillers. So, for doctors, of course, realizing this is very difficult.

And the second one, because the supply chains are kind of disrupted, it's difficult to get the medications on time. Then many doctors leave the hospitals and go to the war front and let's say, do surgeries there or just help the wounded people. Sometimes we're out of the staff or out of the specialists, some of our surgeons. We are a small country and there might be four narrow specialists, one or two specialists, and when your specialists are at the military hospitals, how can they operate? How can they do surgeries for the kids? And of course, everyone has a relative, everyone has a friend who is there and you are thinking about them even if you are not there.

So, from all sides, you are depressed. And that's the war. That's how the war looks. In the cities which are under the bombs, of course, the situation is even more difficult than what we see in different parts of the world.

Dr. Lidia Schapira: The reality of the war is always awful and I really admire your ability to bring this to our attention in such a clear way. Let me ask the question again. How do you and your colleagues get through the day? And I imagine that you're probably sort of reliving the trauma in a way when there is a new war in the world, as there is now in your general area of the world. How are you all doing?

Dr. Gevorg Tamamyan: With every new war, including this new war in Ukraine, I mean, people are dying. You see these images from the cities. The worst thing is that you know these people are from both sides and you have friends from both sides, and even these fighting sides, I mean, they were brothers a day ago. And you see how kids are dying, you see how young people are dying, and you see displaced people who are leaving their houses. It's really very difficult.

In the meantime, the situation here is also not calm. During the last months, several times we observed a similar situation in Karabakh, again, wherein several villages people were displaced. It's kind of a no war, no peace situation. And can you live with the thought that the war is going to begin again soon and you don't know what's going to happen? That's the reality.

Dr. Lidia Schapira: So, you bring our attention, Gevorg, to the enormous disruption in care for children and adults with cancer caused by war, both the interruption of cancer-directed care, but also the interruption of palliative care. There's a general feeling, I think, among many oncologists throughout the world of wanting to help. How can people help?

Dr. Gevorg Tamamyan: It's very difficult, to be frank, to single out a solution, but there are different ways. First of all, I think one kind of help would be just to write an email and say, ‘How are you doing?’

Because in the world, what we are lacking the most, it's paying a little bit more attention to our friends and neighbors and people we know. And of course, with our routine daily life, we are so busy, but even a small message can help the people with the stress. At that time, maybe someone will say, “Okay, do you have ten ampoules of this or fractions of this drug?” Or something like that. “Or would you give me advice on how I might manage this child?”

But of course, my suggestion would be that all the professional societies and humanitarian organizations, and major cancer institutions put their efforts into trying to find systematic solutions for how it is possible to help patients or professionals in the conflict-affected regions, and how to help displaced populations. And not only when the conflict erupts or war erupts because there are conflicts all over the world right now.

For example, people in Syria, right? They experience so many struggles. I was reading in the ASCO post, there was an editorial, that tens of thousands of professionals left Syria. So, people are left without basic health care, and similarly in Iraq, Afghanistan, Ukraine, and in many parts of the world.

So, I think a systematic effort is needed to help the patients and professionals. I'm sure when we get together, we'll find better solutions. But of course, the best way is to keep the peace. But sometimes it's out of our reach.

Dr. Lidia Schapira: That's right. So, some things are out of our reach. But one of the things that we can all do is, as you so beautifully articulated, to show some solidarity and to start by reaching out to a colleague we know or to somebody who is in that area just by checking in, ‘How are you doing?’, ‘Is there something I can do to help?’

And then, of course, through the power of these stories, I think to sort of help people understand that there are ways of getting involved, as you say, to think about creating perhaps a better infrastructure to deal with both cancer care and pain and symptom management for all the people affected by and displaced by war.

Dr. Gevorg Tamamyan: Yeah, I agree, definitely.

Dr. Lidia Schapira: Do you have a final message perhaps for our listeners, Gevorg? Let me give you the last word.

Dr. Gevorg Tamamyan: We are talking about war and we are talking about cancer. My only wish is for there to be peace in the world and there is a cancer-free world, of course.

Dr. Lidia Schapira: Thank you so much for taking the time out of your busy schedule to share your thoughts. Thank you so much to you and your team for sending this beautiful essay to us.

Until next time, thank you to our listeners for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review on Apple Podcasts or wherever you listen. Be sure to subscribe so you never miss an episode.

JCO’s Cancer Stories: The Art of Oncology is just one of ASCO’s many podcasts. You can find all of the shows at podcasts.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

"A Soft Spot," by Rebecca Snyder: A surgical oncologist discusses the hidden emotional toll experienced by patients with cancer.

TRANSCRIPT

Narrator: ‘A Soft Spot’, by Rebecca A. Snyder, MD, MPH.

I remember a day as a child when my father, a vascular surgeon, came home and immediately retreated to his bedroom. He did not emerge for some time, and when he did, he spoke very little to anyone. When I asked my mother why, she told me softly, ‘One of your father's favorite patients died today, and he is sad.’

This surprised me at the time that my father felt so deeply for his patients that it affected him for hours after coming home from work. I understand it better now.

I first met Gary after his medical oncologist asked me to consider operating on him for colorectal liver metastases. During our initial visit, I observed that he was a quiet man: nervous, kind, and polite, saying little unless prompted. Over time, I came to learn that he was a solitary person who found fulfillment and purpose in his work, enjoying hunting and fishing in his spare time.

He lived almost an hour and a half away in a rural part of North Carolina. Outside of his visits, we communicated mostly via his brother, because his cell phone rarely had reception.

In the months before our first visit, he had been treated heavily with chemotherapy and appeared to have had a good response to treatment. Although he had disease in both sides of his liver, it looked as though his disease was resectable with a two-stage operation. The first stage to remove the left part of his liver and the second stage to remove two metastases in his right liver. He was young, in his early 50s, and otherwise healthy - a good candidate for surgery.

The first-stage operation went smoothly, but when I saw him back in the office to plan for the second, his imaging revealed significant growth in the two remaining metastases in his right liver. To make matters worse, his normal liver had failed to hypertrophy enough to allow for another resection. He silently stared at the floor, visibly disappointed when I shared this with him. I told him I was disappointed too.

Together with his clinical team, we then embarked on a series of treatments, beginning with microwave ablation therapy to the growing tumors. Unfortunately, in the interim, he developed a new liver metastasis with resulting biliary obstruction.

We attempted unsuccessfully to drain his liver with an endoscopic stent with the goal to restart systemic chemotherapy. At our most recent visit, I expressed my concerns that the endoscopic stent had not been effective and recommended a percutaneous drain to decompress his bile duct.

His gaze drifted to the floor. Sensing he was upset, I placed a hand on his shoulder, hoping to convey a steadiness and confidence that might offer some reassurance. As tears formed in his eyes, I felt his discomfort at displaying emotion in front of me, so I offered him a few minutes of privacy with his brother.

Although he had been willing to undergo repeated endoscopic procedures, it seemed as though the idea of having a drain outside his body, a visible and tangible reminder of his progressive cancer, was clearly distressing to him.

When I re-entered the room, we reviewed our plan for him to have an external drain placed and then begin a modified regimen of chemotherapy next week, which he and I both knew would not be curative. We did not speak this aloud, but the eye contact he made with me communicated that we shared a common understanding. I silently hoped that it would buy him some time at least.

Two weeks later, I unknowingly clicked open an automated message in the electronic health record stating very matter-of-factly that Gary had been brought in by emergency medical services, dead on arrival, from a gunshot wound.

I called his medical oncologist, who reluctantly confirmed the news. He told me he had hoped that I would not find out because he knew I would not take it well. Suffice it to say, he was right. Although most of the cancers I treat, pancreatic, metastatic, colorectal, and cholangiocarcinoma, are aggressive malignancies with poor long-term survival, Gary was the first patient of mine to commit suicide.

When I first learned of Gary's suicide, my mind immediately returned to my last visit with him. ‘Had I been too honest and direct, not buffering the concerns we discussed with enough hopefulness? Had he expressed signs of clinical depression that I had missed, misinterpreting his responses as a normal disappointment when in fact they reflected much deeper despair? Should I have confronted him more directly?’

I called his older brother while the news still freshly stung, feeling a sense of urgency to make sure his family knew how much Gary mattered to me and to his treatment team. After we exchanged platitudes, I found myself telling him that I had always had a soft spot in my heart for Gary, which was true. I tried very hard then not to cry but failed.

As a private person myself, I have always felt a particular sense of community with introverts like Gary, a shared experience of a need for privacy, an appreciation for quiet and aloneness, and a discomfort with being overly expressive among anyone other than close friends or family. Nature or nurture, I inherited this trait from my mother, who preferred pursuing her solitary artistic hobbies over small talk.

Like Gary, my mother also became deeply depressed when she was diagnosed with metastatic lung cancer, a depression that worsened when she experienced debilitating side effects of treatment, only to learn that these treatments had not even been effective. As her daughter and one of her caregivers, it was not her physical suffering but her emotional suffering that was most agonizing to witness.

During my mother's experience with end-stage cancer, I gained an intimate awareness of cancer's emotional toll in a way never afforded by my formal training or in my clinical practice. Stepping beyond awareness toward confident intervention with my own patients, though, has remained uncomfortable for me. I listen, offering empathy and understanding, explaining treatment options when there are any, and comfort when not.

For some patients and families, I morph into a punching bag, offering them an outlet for their anger when I cannot offer them anything else. With Gary, I tried to communicate to him that beneath his displays of hesitancy and reservation, I recognized the struggle he was experiencing, his hopes, and perhaps more importantly, his disappointments.

Now, I do not feel like this was enough. Losing patients to cancer is something I have experienced from both a professional and personal standpoint and unfortunately, with which I have grown all too familiar. Knowing that a timid and kindhearted patient of mine felt a sense of hopelessness and despair this deep, however, is acutely and newly painful.

I imagine I will always carry a soft spot for Gary with me, a tender soreness that lasts. It may go unnoticed at times, forgotten temporarily with the distraction of another patient's triumph: a curative resection, a follow-up scan with no evidence of disease, or a grandchild's high school graduation witnessed. Yet, I expect it will sting again, just as a bruise does when pressed intentionally and gently, to confirm that it is still there. I will be reminded of him, feeling a familiar ache when I witness someone's growing despair.

Next time, I will pause to ask, ‘Are you losing hope?’ Perhaps you will ask too.

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org.

I'm your host Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. With me today is Dr. Rebecca Snyder, Assistant Professor of Surgery and Public Health at Brody School of Medicine at East Carolina University. We'll be discussing her Art of Oncology article, ‘A Soft Spot’. Our guest has no disclosures.

Rebecca, welcome to our podcast.

Dr. Rebecca Snyder: Thank you, Lidia.

Dr. Lidia Schapira: It's a pleasure to have you with us today. I'd love to start by asking you as a gifted storyteller - I've read some of your stories published also in other publications - tell me a little bit about your writing process. Why do you write? When do you write? What brings a story to the page for you?

Dr. Rebecca Snyder: I would say that I don't have a very structured process. Typically, it begins with some ideas that percolate in my mind, oftentimes prompted by one specific event. And then I think once I have time to sort of bring in some other thoughts and start to formulate them, then it really happens when I have a moment to sit down where there's quiet, and my children are not interrupting me and my pager is not interrupting me, and have a few hours to really sit down and get something on the page. And then I do quite a bit of editing over time. I reread a lot and rethink about the way I say things until I get it just right. So, it takes me days.

Dr. Lidia Schapira: That's very interesting. Let's go back to something you said. Let's chase after that a little bit. You said something that sort of stays with you or percolates; is it a moment of particular emotional resonance? Is it a difficult situation? Is it something that triggers a deep memory for you?

Can you tell us a little bit more about what got you to write, say this piece about Gary, you've also written about your mother, you've written about being a petite surgeon in a sexist world, what are those ideas that stay with you, that then lead you to write about them?

Dr. Rebecca Snyder: They're each a little bit different. So, I don't know that I have one answer to that. I think my experience with my mother took me a long time to be ready to write about it. It was something way too emotional for me to even confront for myself for a long time. And then eventually, I felt like I was in a place where I could put something on a page and that was very therapeutic for me.

With Gary, that was really an acute event. And when it happened, and I processed it emotionally, I knew that it would help me to write about that. And so, I actually did that, I believe, either the same day or the next day that I learned of that event. At that point, I wasn't necessarily writing with the intention of publishing, but just to help me get through those feelings in that experience.

Dr. Lidia Schapira: So, I'd like to talk a little bit about this idea of writing and sharing with others. One thing is to write to process a difficult experience, which you've so nicely stated. The other is to take the further step of writing for publication, which means putting something that's really private out in front of your colleagues, your peers, and so on. Tell us a little bit about that. What triggers you to say, 'Alright, I've written this to process but now I want to share it'?

Dr. Rebecca Snyder: I write about how I consider myself an introvert. Some people who know me well aren't surprised to hear that. Some people say, ‘Oh, I wouldn't have expected that you consider yourself an introvert.’

I think that for me, there are thoughts that I don't feel comfortable communicating, necessarily in a public forum, or with people that maybe I don't know as well. But when I can do it in written form, for some reason, that's more comfortable.

So, it's a way for me to share things that I feel compelled to share that I think are important and relevant to other people and may resonate with them in some way, but that I might not be comfortable broadcasting to a large audience. And so, writing allows me to share those feelings within the comfort of my introversion.

Dr. Lidia Schapira: What role does narrative and narrative medicine play in your professional portfolio? Do you read other narratives?

Dr. Rebecca Snyder: Honestly, it's one of the things I enjoy the most, aside from operating. I don't have formal training in it. Although I imagined I would really enjoy taking some courses. I think my writing has been informed by my own amateur reading and writing over time, I've always been a big reader.

I've written about my mother's love for books. And that was something she shared with me beginning when I was a young child. I think it's become part of how I see myself professionally. Although it still feels a bit like a hobby. I think that it should play a significant role in medicine. But I don't think that we have done a great job as a medical community of incorporating that into the dialogue.

Dr. Lidia Schapira: I share that sentiment. It would be lovely to see narrative medicine in the mainstream of medical education, rather than perhaps at the margins or as an optional thing for some, I think stories that are enormously powerful.

And so, with that, let me ask you another question, and that is, what have you read recently that you recommend to others?

Dr. Rebecca Snyder: You asked if I read another narrative medicine? I read, A Piece of My Mind at JAMA every week, and I read the Art of Oncology. One of my other favorite weekly columns is Modern Love in the New York Times, I look for that every Sunday.

And then I read a variety of books. I would like to say I read more than I do because I think my clinical reading takes up quite a bit of my time as well. The last novel I read was, The House in the Cerulean Sea by TJ Klein, which was a great, very magical, lovely story. I found with the pandemic that I can't read things that are really intense or distressing. So, I chose things that are uplifting in some way or positive, and that was a lovely fantasy-type book to read. And then I read some nonfiction. I'm reading a book about the Old Testament now because I wanted to learn more about that. So, I try to have a diversity of literature that I'm reading at a given time.

Dr. Lidia Schapira: Do you read books or screens?

Dr. Rebecca Snyder: Books, 100%. I don't like screens to read. I print off every peer review, I do. I have to print it. I can't read. Other than editing, I don't like to read on a screen.

Dr. Lidia Schapira: Let's go back to your story about this patient, Gary, whom you met and operated on. And the need you had to talk about the emotional response you had to learning that he suicided, that is something that is so very difficult for all of us.

So, first of all, my deep condolences to you for your loss. Tell us a little bit about the relationship you had with Gary.

Dr. Rebecca Snyder: I don't know if we're supposed to admit, as physicians, that we have favorite patients sometimes, but he was one of my favorite patients. What I appreciated about Gary early on is he was very soft-spoken, he was very bashful, and he would blush easily. I could tell he never wanted to be a burden, even in my clinic.

So, he didn't want to take up too much of anybody's time. He usually brought his brother with him and allowed his brother to speak for him. And he would speak up when I would ask him directly, but often would nod or use body language and was very quiet.

The first time I saw him he had been treated for a long time with chemotherapy. I believe he was sort of under the impression that he did not have any surgical options. He'd never seen a surgeon before, but his medical oncologist approached me and said, ‘I know that you're willing to be aggressive, and he's healthy and young, would you consider it?’ And I had reviewed his scans ahead of time and thought it was worth an attempt. And so, I met with him and in some ways, I feel like I probably gave him some hope at that point. Maybe he had already processed that, but I reignited that.

I got to know him pretty well because I cared for him for a while. Obviously, I saw him several times prior to surgery, then I operated on him, and cared for him postoperatively. And then once he recovered, and we planned for the second stage. And so, I grew attached to him because he was in no way demanding or difficult, but very unassuming, very kind, and just a gentle soul.

Dr. Lidia Schapira: And you talk about having moments of sort of shared silence or shared understanding, right? So, it sounds like you, you bonded with him. Most of the communication was done through his brother because he didn't have a cell phone or his cell phone was out of reach, right?

And so, you hoped with him that you would be able to really help prolong his life. And then came the bad news that his cancer was growing. Bring us a little bit into the consultation room where you share that news with him.

Dr. Rebecca Snyder: When we first talked about it. He was quiet. He looks at the floor a lot. And he didn't verbalize his disappointment, but I could see it. I validated that for him and told him I was disappointed too. But I think when I really saw a shift was when I told him that I thought he needed to have an external biliary drain placed. I think he was continuing to work through all this. And that was really important to his identity, and the idea that he might have to have a drain, I think for him was incredibly distressing.

I think to him it kind of marked him as different, as this is permanent, and would mean that he might not be able to work, and that was a big blow for him and I could tell that. I could tell he was starting to tear up but he was very uncomfortable doing that in my presence. So, I told him I would give him a few minutes of privacy and left the room so that he could express his emotions more comfortably.

Dr. Lidia Schapira: And that was the last time you saw him, right?

Dr. Rebecca Snyder: That's right.

Dr. Lidia Schapira: So, then he leaves and you received the news that he suicided, but you're not told directly. You read it in the chart. And you immediately called the medical oncologist and they said that they wanted to protect you from this news. How did that feel?

Dr. Rebecca Snyder: It was shocking. You know the Electronic Medical Record has some wonderful things about it. It's easy to keep up to date with your patients, you get alerts anytime a patient of yours is admitted to the hospital or discharged from the hospital. But yet, it's obviously incredibly impersonal and abrupt.

And so, I had a notification that he was deceased. My initial thought was, ‘Wow! He must have had cholangitis. And he didn't complain about his symptoms and he didn't tell me by the end, so he must have gotten really sick and septic. And then that must have been what had happened. But then when I looked at the chart, and I called his medical oncologist, and I read the details, I realized that's not what had happened, and that was very hard.

Dr. Lidia Schapira: I imagine it must have been absolutely awful. Again, my deep condolences to you. How did you deal with that news? How did you get on with your day after that?

Dr. Rebecca Snyder: I called his brother first. I wondered, maybe I shouldn't now because it shouldn't be about my grief - I'm the physician - it should be about his family's grief. But I still wanted to connect in some way pretty immediately with someone else, in addition to his medical oncologist.

He was very gracious and appreciative. We didn't speak for long, but I just wanted to make sure that he understood that we all cared that that had happened because otherwise, I would never have spoken with him. If I don't reach out. There's no follow-up visit, there's no opportunity in the system to complete that conversation. That helped me a little bit, and then I had to try to turn it off. I had to go lead our GI tumor board and have afternoon clinic and go on with the rest of the day.

Dr. Lidia Schapira: Well, I'm deeply grateful to you for having written about it and decided to share it with us. I think that losing a patient is terribly hard. We do connect with our patients and feel for them. But this, learning in this way that one of your patients suicided or found living unbearable, is probably the hardest thing. Fortunately, we don't deal with it often. And many of us have or have not had those experiences. So, thank you so much, Rebecca, for reflecting and sharing that reflection with us.

Are there any other thoughts that you want to share with readers of the piece that may help them understand the story or the message here?

Dr. Rebecca Snyder: I can say since it's been published, I've already heard from several colleagues that they have experienced something similar. One was particularly devastating because the patient had actually completed therapy but had lost his business and committed suicide because of the financial burden of his care.

If you think about it, those are the patients with the greatest extent of distress. But that's not even touching the emotional burden that so many patients are experiencing that we never see. I don't think it's possible or it's on us to alleviate that because some of that is a normal reaction to a cancer diagnosis. But I do think that being aware of the depth of despair that patients can experience is important. And having witnessed my mother being on this side of the patient, even just that recognition and empathy from one's physician can mean a lot to a patient and their family. So, I hope that we can all at least bring that awareness into our clinical encounters and try to offer that empathy when we sense those feelings.

Dr. Lidia Schapira: Well, I'd like to thank you for sending us your story, and thank you very much for participating in this conversation. I deeply enjoyed it.

Dr. Rebecca Snyder: Thank you, Lidia! I really appreciate being here.

Dr. Lidia Schapira: Until next time, thank you for listening to this JCO’s Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen.

While you're there, be sure to subscribe so you never miss an episode of JCO’s Cancer Stories: The Art of Oncology Podcast. This is just one of many of ASCO’s podcasts, you can find all of the shows at podcast.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for you in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

"Warm Companion," by Meaghann Weaver: a palliative care doctor shares her story of a gun-shy dog and a daring rescue.

TRANSCRIPT

Narrator: 'Warm Companion' by Meaghann S. Weaver, MD, MPH, Ph.D.

We were introduced at the front desk of a small town diner. By the time we reached the parking lot, we had committed to cohabitation.

I pulled over to a small town’s sole restaurant. Standing at the long counter, I waited for a carry-out dinner for the long drive home from a rural hospice visit. As a closing weekend in hunting season, I was the only one in scrubs and a mask in a diner filled with camouflage and deer antler de´ cor. The guy next to me was loudly complaining to his hunting buddy how his new puppy was gun shy and let the birds go. “Good for nothing.”

I mumbled that as a pediatrician familiar with gun violence and firearm accidents, I’m also gun shy. He pointed to his truck and jokingly suggested, “Welp, maybe you’d be a better pal for that whelp.” One look at those puppy eyes from the cargo bed, and I emptied my wallet, handed him my uneaten to-go-boxed dinner, and carried his pup to my car. “No more guns,” I whispered as we hit the highway.

She joined our little family at the onset of COVID-19, snuggling close to us in the midst of the pandemic’s physical distancing. I had planned to name her Agape. Her first collar tag jingled with the idea of a universal, unconditional love that transcends and persists regardless of circumstances. My kindergarten-age daughter insisted on calling out “Lovey” as she followed the new pup, all paws, around the house. The name persisted until the puppy responded only to “Lovey.” Her collar tag was soon replaced with the vernacular: Lovey. Lovey represents a bonded attachment, a security and safety, and a held comfort. She is Lovey.

Lovey nuzzled into our relationships and roles. My dad added milkbones to his right back pocket since his left back pocket was already filled with peppermints and lemon drops for my daughter. Lovey quickly tripled my pedometer footsteps. She motivated me back into early morning jogging. She introduced us to new parks. She taught us persistence with tennis ball retrievals and a dogged perseverance for finding frisbees. Lovey wagged her tail at kind strangers with sureness of future friendship and was on guard and protective when needed. She mastered the Labrador lean, offering my shins a counterpressure under the telehealth tabletop. She reminded us of the power of instinct and interaction. She represented goodness.

One chilly morning after a night shift, I took Lovey to visit a lake further than our usual landscape. Walking through tall grass with the harsh prairie winds whipping around us, Lovey suddenly started barking an unfamiliar howl. She wouldn’t let me check her paws for nettles or fur for burrows as she frantically lunged toward the lake. Far off, I then saw what she witnessed. A lone ice fisher’s dog had been walking on thin ice 60 feet from the edge, crashing through, while the angler stood sturdy. The ice fisher went to rescue his dog but instead also crashed through. They both thrashed and struggled in the freezing water. They gasped and clawed at the slippery, growing ice ring around them. Without a sense of locale or direction, I pinged 911 to my cell phone and tracked their 11-minute arrival. Racing to the lake edge, I yelled out that help was coming. I prayed for a protective bradycardia, fearing a hypothermic-induced arrythmia would kill sooner.

If I entered the broken ice waters to reach them, we’d all just freeze together. Helpless. I tried to throw Lovey’s leash to them. Useless. Without a rope and without ability to reach out, I felt “Good for Nothing.”

Except I was present. Fully present. I was bearing witness to suffering without shying away. I couldn’t rescue. I could just remain. The presence of another human served as an antidote to aloneness. I instructed the fisherman to look at me. I asked him to trust me. I told him to protect his strength by stopping the struggle. Just be with me. Just hold on.

I assured him that his dog knows how much he is trying to help. “Tell me about your pup.” Teeth chattering, he told me about how they met. Then, a sacred silence. I asked if he wanted to keep talking. He told me about how he named her. Silence. He told me he rescued her, but he’s pretty sure she rescued him. We talked about the reciprocity of such relationships.

As the minutes dragged on, his breathing changed. I suggested, as I have done time and time and time again between covering COVID-19 comfort care night calls in New York during the pandemic surge to rural home visits during relentless variants, that we breathe together. As in palliative clinical practice, I heard myself telling him to trust his strength. I suggested he curl to protect his core. I found myself instructing him to protect his heart. Then, true to medicine’s focus on what matters most in life, I reminded him to remember love, forgiveness, and peace and to truly trust his body. He rallied. He lifted his dog’s back legs. The dog slippery-sprinted over to join Lovey in a victory jig. Downward dogs bowed. Paws pranced. Collars jingled.

We heard the sirens. Rope and rescue floaties reached him. The Sherriff turned his back while I switched his bib overalls for my sweats and fleece. Without guidance or prompting, Lovey and her new-found canine friend covered the fisherman with their bodies. They covered his core and licked his face. Our faithful companions warmed him. They remained silent and still as he started to stir. Their patient presence and warmth brought healing. After a prolonged silence filled with just gentle presence, his chattering teeth started to form words. His dog barked in recognition of a familiar, favorite voice.

Companioning represents sacred stillness, not frantic fixing. Companioning means being present to another’s grief, pain, or suffering. Companioning represents profound presence rather than rescuing. A primary tenet of companioning is bearing witness to the struggles of others without shying away.

As I tried to add warmth to the pile of pups, I thought about how we’ve all been walking on thin ice in medicine, especially during the pandemic.

Companioning applies to contingency or crisis phase. Companioning has meant holding up the iPad for telehealth hospice goodbyes during visitor restrictions. Companioning has meant tirelessly advocating for vaccinations and masks without judgment or unkindness. Companioning has meant pivoting to telehealth to continue to caringly check in on patients with immune system vulnerabilities while protecting them from clinic exposures. Companioning has meant wiping the brow of a colleague when they can’t reach past their protective layers. We haven’t been able to rescue the curve or fix the surges. Still, companioning means being present for each other and our communities to offer healing warmth in a cold world.

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network. A collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org.

I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University. And with me today is Dr. Meaghann Weaver, a lead regional ethicist at the National Center for Ethics in Health Care, and an adjunct associate professor at the University of Nebraska. We'll be discussing her Art of Oncology article, 'Warm Companion'.

The views expressed in this podcast are those of the author and do not necessarily reflect the position or policy of the US Department of Veterans Affairs, the US government, or the National Center for Ethics in Health Care. Meaghann, welcome to our podcast.

Dr. Meaghann Weaver: Thank you. It's a joy and privilege to be with you this morning.

Dr. Lidia Schapira: So, tell me first a little bit about your writing process. How does a story present itself to you? When do you know that it's time to put it on paper or on screen?

Dr. Meaghann Weaver: It's interesting the way that narrative medicine evolves in a really different way than research and summarizing data in written form. In many ways, I think of that as a cognitive process, where you can be planful and structured. Whereas narrative medicine, it occurs as a story that just has to be told. It's beating so profoundly in your heart, that even if you want to contain it, and hold it as personal, I think for me, it's really an uninhibited moment.

So, funny enough, I tend to do research during day hours or very structured hours, whereas narrative medicine is very much waking up in the middle of the night saying, 'This has to pour out. I can't continue to contain the truths from this narrative.'

Dr. Lidia Schapira: It’s a lovely description. Tell me a little bit about how you decided to share with others? I totally understand the need to reflect and tell a story, but how do you decide what is private in what you want to share?

Dr. Meaghann Weaver: I would say that in clinical experience, and even in ethics consults, there are so many stories that are quite profound, but are so intimate, are so personal, even if you de-identified them, they border on sacred and so those for me remain really untold. Those are held by the participants of the story.

For me, it's this particular narrative in one of our staff meetings, we had a couple of extra minutes. And so, I just shared, you know, what had happened over the weekend. And my colleagues said, ‘You have to write that.' And a number of them followed up and said, ‘Have you written that? You need to write that.’

So, in many ways, it's if the narrative resonates with others, in many ways, they think sharing can be selfless. It can be hard to share. But my colleagues really said, ‘You might have a duty to share this one because it resonated with our experience and COVID.'

Dr. Lidia Schapira: It's a lovely story. So, tell us the story of how you met Lovey? How does the pup become your family's own? And how Lovey led you to this moment that is so amazing that you describe so beautifully in your story? Your story, unlike many other narratives in the Art of Oncology, has so much suspense to it. I mean, the reader will hold their breath, to try to see how the story ends.

Dr. Meaghann Weaver: Thank you. Well, I met Lovey in really spontaneous circumstances. I, as many during the pandemic, anticipated adding a family pet to our family, was starting to prepare, but Lovey in many ways was a little bit impulsive, because I met her where she seemed particularly vulnerable. And I just experienced a time of seeing her, seeing that she might have been in an environment that wasn't actually drawing out her strength. So, she wasn't living up to the hunting dog persona.

And so, in her community, she was maybe perceived as not useful or not productive, that I was encountered her at the end of a hospice visit, and we know from oncology, we know from hospice, from palliative care, presence and being and really living into your strengths, like your core identity.

So, I encountered her and noted that she's really gentle, and she might not be a hunting dog, but she would have such joy and contribution to the right community in the right setting. And so, in many ways, it was an impulsive attachment. And then she so quickly nuzzled right into our family and brought so much comfort and truly brought companionship, and she helped us to re-engage and live life with a deeper level of fullness. That's Lovey.

Dr. Lidia Schapira: Sounds absolutely wonderful. How old is Lovey, now?

Dr. Meaghann Weaver: She just turned two.

Dr. Lidia Schapira: In your essay, you talk a lot about companionship. You also mentioned the concept of bearing witness to another's suffering or crisis. And you talk about presence. Can you tell us a little bit about these three concepts and how they came to you so clearly, as you reflected on this incident, and perhaps you should tell our listeners also, what actually happened, and what the story is about?

Dr. Meaghann Weaver: So, the story is about after a particularly challenging night shift, I took Lovey for a walk at a lake which is of further distance from our usual geography, and it was deep winter, there was an ice fisherman out about 60 feet from the lake edge. And it's very common in our community for ice fishers and hunters to bring their dogs with them. It's just a partnership.

This particular pup fell through the ice. Lovey and I were walking quite a distance from the lake and she just had this really impulsive shrieking. I thought she was wounded. She had this really strong instinct of another animal's injury or needing rescue. So, she was really pulling and lunging me.

So, I followed her, actually pretty nervous because she was acting so out of character. I followed her and she brought me to the lake's edge, and then I saw the fisherman had also fallen through in his attempt to rescue his dog. They were too far out. I tried to throw her leash, but there was no way for me to rescue, which as you can relate in our calling in medicine, we're trained to rescue, we're trained to fix, to intervene, it felt so counter natural. It felt so counter to training. And so, just calling out connecting with him, trying to let him feel that I was really close, even though I was at quite a distance. I called for help. I pinged 911 to my phone. I had no idea really where I was other than somewhere very rural area like a frozen lake.

So, I pinged them to my phone. I just continued to reassure him that help was coming. And I just asked him to stay connected with me. It was clear that his dog gave him such meaning, you know, the fact that he would sacrifice his safety to rescue his animal. So, I tried to engage him in narrative. And it seems what was most helpful for him was less when I asked about him as the fisherman or as a human and more when I asked about his dog, and how he was connecting him back to what mattered to him.

And so, very long story short, he was able to rally just like we see at the end of life for many of our patients, this final rally, so he rallied, and lifted his dog who came to us, and then we had a really sweet reunion with his pup.

So, the sheriff arrived, it took about 11 minutes, and I was quite concerned physiologically, whether we would sustain life in that time gap. So, the sheriff arrived; he was able to throw ropes and rescue floaties, and that patient was able to then be retrieved.

He was pretty obtunded when he came out of the water, but was able to hold on to the rescue equipment and to just be then pulled to safety, then warmed really with our two dogs just laying on him licking him, very instinctually, they just covered him, and it was just their warmth and being present.

I think that's what we see in medicine often when disease has progressed, and we are sort of past our biomedical ability to intervene. In many ways, there is still profound healing. And for me, in this narrative, the healing was human warmth and the presence of living beings, and companioning, remaining present, bearing witness to someone who is really struggling, bearing witness without thrashing around, feeling like the only help you could offer is fixing.

I think that the story would have been more exciting if it were a palliative care doctor ethicist dives into freezing water, but we wouldn't have helped him. So, it’s really saying, 'I'm gonna bear witness, stay with you, companion with you as part of your healing.' I think there's a message in there for medicine, too, staying with our patients.

There's actually a narrative there too, because of course, in hypothermia, you need to change the person's clothing. And so, probably the humorous part of the story is the sheriff turning around and me putting the fisherman in my fleece and my scrubs, and me putting on his bib overalls. I think that's probably quite the visual.

Dr. Lidia Schapira: I must say, I saw that. I didn't know what you looked like, but I could just imagine the scene. Tell me a little bit about that moment, when you have to do this cognitive switch from, ‘I'm diving and I'm rescuing to I'm bearing witness and I'm present?’

Dr. Meaghann Weaver: That's such a powerful cognitive switch because, in many ways, it's instinctual to fix and to rescue. So, I almost would say that is a practice that has to be in some ways predetermined.

And so, I think it's a commitment and it takes practice outside of the clinic space to really say, ‘My role in this patient's life is to help them ask the questions they need to ask, help them explore the answers without me forcing the answers upon them', and help them in some ways you could think establish the safety net that they need.

So, foster that, without forcing it, without thinking my sense of rescue would be the same that would be most beneficial to them. So, I think that is really a practice that requires contemplation and commitment because the impulse is to rescue. The impulse is to fix, and so, it really takes strategizing.

Dr. Lidia Schapira: Meaghann, I'm sure you've given this some thought, how would you have felt if the story had a different ending? If the sheriff didn't arrive in time?

Dr. Meaghann Weaver: I tried to protect myself from thinking in that way. I think I would have experienced immense guilt, and I perceive it would be natural to feel that I then should have gone into the water even if I couldn't have made a difference. I anticipate that there would have been a significant weight.

And so, it takes thinking in a logical way because my heart would have said, ‘Well, just dive in and be with him.’ And also, I think the emotive experience of guilt would have been really heavy. I thank you for asking. I think that's a courageous question and one that I’ve have to reflect on.

Dr. Lidia Schapira: You've written about guilt before, so I know that you are certainly not shy in thinking about the emotional landscape of our work. But let me end this with a little bit more of a playful question. And that is about the pups here, the role that the dogs played because the dogs are all about instinct and impulse. We can't ask the dogs about their cognitive experience, but we can watch their behavior.

And I was certainly moved, I laughed and felt this incredible energy and warmth when you describe both pups were on the body of the fisherman, warming him up. So, tell me a little bit about this bonding with dogs and using dogs both for therapy for oneself and therapy for others.

Dr. Meaghann Weaver: Yes, it's amazing to me the way that our pups have a way of connecting with us and with our core self… Oops, my pup is participating. Connecting us with our core selves.

I noticed even in my work, that the respite and the sense of connection that we have, with our animals, with our pups, there's something so instinctual and uninhibited about it. And I also think much of our work is so serious, but their playfulness, and then their unconditional and really uninhibited celebration, when we're sort of reunited after a long day or there's something, it’s really hard to describe it just this profound feeling of warmth and of belonging, and companionship.

Dr. Lidia Schapira: Well, thank you so much for the conversation today for this absolutely beautiful essay, for sending us your work, and for sharing this experience with the broader community of readers. Thank you, Meaghann!

Dr. Meaghann Weaver: Thank you! I’m grateful and I do turn quickly when I receive the journal to this section. So, thank you, I find that it resonates with my head, my heart, and my spirit. So, thank you for fostering that.

Dr. Lidia Schapira: You’re very welcome!

Until next time, thank you for listening to this JCO’s Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen.

While you're there, be sure to subscribe so you never miss an episode of JCO’s Cancer Stories: The Art of Oncology podcast. This is just one of many of ASCO’s podcasts. You can find all of the shows at podcast.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

"Dose-Painting," by Shivani Sud: a resident creates visual narratives within two patients’ dose clouds.

TRANSCRIPT

Narrator: 'Dose Painting' by Shivani Sud, MD. (10.1200/JCO.21.01524)

When asked to describe radiation oncology, my first recollection is watching chart rounds as a medical student. Sitting along the conference room periphery, I observed as dosimetrists projected patients' scans, residents presented histories, and attending physicians reviewed treatment plans. Far from the usual hospital rounds with plans consisting of procedures, consults, and medication changes—here, treatment plans are scans overlaid with intricate colorful lines denoting the amount of radiation traversing internal structures to arrive at the target (ie, tumor) volume. This dose visualization is our primary method of conceptualizing and articulating radiotherapy treatments.

Recent technological advances enable delivery of radiation with immense precision to the extent we dub some techniques as “dose painting.”1 Starting with our planning scan consisting of computed tomography images of the patient in the treatment position, we delineate areas of tumor and likely microscopic disease to compose our target volumes. In collaboration with dosimetrists and physicists, we adjust various parameters including multileaf collimators—movable metal leaves that sculpt the x-ray beam as it departs the linear accelerator to enter the patient—and beam angles such that we cover the intended target with radiation while avoiding delicate neighboring organs. We evaluate and iteratively optimize our radiation plans and the resultant dose distribution. Balancing the correct radiation dose, treatment field size, and shape are critical for preventing recurrence, minimizing toxicity, and improving survival.

At the first glance, our peer review reduces the patient to a spectrum of grayscale pictures a few millimeters thick as we scroll through their bodies searching for tumor and ask whether our colorful delineations will adequately treat the cancer. Controversial plans elicit the most discussion as we glean insights into patients' lives and decision making. Why this shorter course of radiation? His priority is quality of life and maximizing time at home. Why no concurrent systemic therapy? She is too frail for chemotherapy—we are escalating radiation dose as an attempt for more durable local control. Why are you sparing a sliver of the scalp? She fears children will tease her for balding. Answers live within a broader narrative. These rainbow-colored three-dimensional dose clouds represent the complex convergence of patient history, goals of care, humanity, medical judgment, and cautious control of our treatment medium—radiation.

As a resident, I view the dose clouds denoted by the color wash of the computationally optimized radiation distributions through the lens of the patient-physician relationship—literally and figuratively. During late nights and unrushed moments, my mind drifts back to my favorite childhood pastime—spotting shapes in the clouds. This activity is a form of pareidolia—the human tendency to perceive meaningful imagery amid a random or ambiguous pattern. As a child with a sweet tooth, I pictured popcorn and cotton candy in the sky. Now, this manifestation of my imagination was centered on my most salient thoughts—caring for an older woman (Ms V) with lung cancer and a child (Lilly) with Ewing's sarcoma. I grappled with whether our treatment plans were adequate, too little or too much. I turned to painting to articulate my angst as art is part of how I reflect on complex situations. For both Ms V and Lilly, I traced the isodose lines defining the radiation dose distributions to maintain fidelity to the original radiation plan. I then folded those dose distributions into the visual narrative of the paintings to create a reflection of their journeys amid their dose clouds.

Ms V (Figures 1 and 2) had countless admissions for chronic obstructive pulmonary disease, heart failure, valve replacements, and now cancer. Ms V longed for quality time until the sun sets. Her case was complex—she had an early-stage lung cancer, but because of multiple comorbidities, she was not a surgical candidate. She projected courage and resolve in conversations about her goals of care while accepting death as inevitable. We treated her with definitive intent linear accelerator-based stereotactic body radiation therapy. Months later, she died from a heart failure exacerbation. I was heart-broken and humbled. Ms V taught me that prognostication is an elusive art for physicians—I was naively optimistic about curing her early-stage lung cancer. She was pragmatic about embracing the trajectory of her comorbidities. As I scrolled through her treatment plan, the beams enveloped the tumor in warm tones denoting high dose as it floated through a sky of trapped air. I imagined her wishes for quality time expressed as colorful, vibrant brushstrokes of light emanating from a sun setting into a calm, reflective ocean overlaid on my target volume.

Lilly (Figs 3 and 4) was a bald, spunky and vivacious four-year-old girl whom I met after multiple rounds of chemotherapy for a chest wall Ewing sarcoma. As we talked about radiation therapy, Lilly flapped her arms while proclaiming herself a butterfly. Weeks later during a status check, she cried in agony from radiation esophagitis. Her mother solemnly whispered “I wish I could take the pain instead of her.” That evening as I was looking for a picture book for my niece, I came upon the story of a baby giraffe on quest to find his spots until one day while he slept, rays of sun shining through the leaves of a tree tanned his skin with perfect spots. Curiously, I searched for the evolutionary rationale for giraffe spots—they are a trait passed between mother and offspring with size and shape predicting fitness for survival. My mind wandered attempting to create meaning amid these random coincidences as I wrestled with uncertainties about how Lilly would fare after radiation. I sketched Lilly as a baby giraffe—her spots, much like the storybook, sculpted by leaves (of tungsten metal) distilling rays (of photons) to sizes and shapes reddening her skin but designed to improve her chance for survival, spots shared by a mother wishing to take her daughter's suffering upon herself. The painting's striking visual of mutually shared bold, whimsically colorful patterns inspired by the axial, coronal, and sagittal views of the radiation plan set against a stark dark matte background aimed to capture the vibrancy of the love I saw connecting Lilly to her mother and their resilience in the most trying times. Witnessing their journey underscored the permanence of the mother-child bond filled with tenderness and compassion that moved me as I was then caring for my own mother who was receiving radiation therapy.

When my mother's radiation oncologist showed us her treatment plan, I was engulfed by the same questions. Is the dose and field size appropriate for tumor control? Will there be irreparable damage? Will her symptoms improve or get worse? Is this what she wants? I viewed her treatment plan through the lens of a meticulous radiation oncologist in training, but this time, I was sitting in the chair along the wall reserved for family members. Like the patients I care for every day, as we scrolled through the intricate colorful isodose lines, I trusted they were the optimal intersection between science (dose) and art of medicine (painting) we strive for as radiation oncologists.

Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcasts.asco.org.

I'm your host Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford. My guest today is Dr. Shivani Sud, a resident in radiation oncology at the University of North Carolina. We'll be discussing her Art of Oncology article, 'Dose Painting'. Our guest today has no disclosures.

Shivani, welcome to our podcast.

Dr. Shivani Sud: Thank you so much for having me. It's a pleasure to be here.

Dr. Lidia Schapira: So, I'd like to start this by asking our authors to tell me what's on their reading list right now, or to recommend a book that has been interesting and inspiring to you that you read in the last year?

Dr. Shivani Sud: That's a good question. I'll be completely honest, I've been a bit boring at the moment with copies of clinical essentials of radiation oncology, and a few of our other handbooks.

Frankly, during the pandemic, and especially with current events, I think I've been more in the nonfiction realm, especially just trying to submerge myself in the news articles and the ground level journalism that's been coming out and so I would actually say that these days kind of a local newspaper and things of that nature have been a bit refreshing.

Dr. Lidia Schapira: Let's turn to your essay and your art. You're very unusual in that you bring to us in your narrative, not only the beautiful narrative and written word, but also visual art. Have you always been a writer and a painter?

Dr. Shivani Sud: I have enjoyed painting for a long time. It was one of those things that started by, I think I was just copying my sister, she once got an acrylic paint set, and she was painting on canvas. And there I was doodling something on paper.

I was always one of those kids who couldn't help but try to fit the whole rainbow into a coloring book page, or any art assignment. And I think that as I went throughout school, and the multiple levels of training that we encounter, as physicians, that painting just became my outlet, whether it was expressing myself, decompressing, feeling like I was channeling my thoughts and my energy into something, while not necessarily kind of sitting idle with those thoughts.

Dr. Lidia Schapira: Your essay helps those of us perhaps, who don't paint as a way of expressing ourselves to understand your process a little bit. And you start by saying that you've always enjoyed looking at shapes and finding connections. Can you talk to us a little bit about the way that you view shapes and find connections? And tell us how you see that in nature, and then in your work as a radiation oncologist?

Dr. Shivani Sud: Certainly, I think a lot of this goes back to that word we mentioned, pareidolia, and this human tendency to want to find meaning in randomness. And so, that was that childhood memory where you're on the playground with your friends, and you're lying on a grassy hill, and you're looking up at the clouds, and somebody sees a bunny, and somebody sees popcorn. And then someone says, 'Well, it reminds me of cotton candy.'

And so, I think as I then look forward to these late nights, these unrushed moments when frankly, you're maybe a little bit tired, maybe a little bit delirious, who knows, but you're looking at your work, you're seeing these shapes, you're looking at the plan, those memories of what the patient said was important, your abilities and limitations to control radiation dose, and seeing them merge together.

And I think it was really that immersion of, here are these dose lines, they're not random. They reflect meaning, they reflect what I am trying to accomplish and what we as a team are trying to accomplish for this patient. And so that was really what gave rise to these visual narratives in trying to take the dose lines, take the patient's narrative, and essentially create that visual narrative within their dose clouds.

Dr. Lidia Schapira: I found your essay so moving and so clear in helping somebody who is not a radiation oncologist think through all of the steps of the treatment planning and the delivery of the treatment, but what I appreciate so much about your writing is the humanity you brought into this.

One of the lines I found so beautiful was when you're describing the scene of this older woman who has so many comorbidities and now is facing lung cancer, and you're trying to palliate and treat with your treatment. And you say, you imagine and I'm quoting you now, 'her wishes overlaid on my target volume'. Can you tell us a little bit about how you imagine the patient's wishes and aspirations as you are crafting a treatment plan and delivering that plan?

Dr. Shivani Sud: It all starts with the consultation. I think oftentimes, even myself before I became a trainee in radiation oncology, I thought it would be a very impersonal field. I imagined just plans and computers and scans, and that it wasn't a field where you necessarily interfaced with patients as much as I learned that we do.

And so, the consultation is an amazing opportunity to get to know the patient. You have reviewed their medical record, you've scrolled through their scans, and you started to think about how you want to treat things. And all of that comes into reality when you actually meet someone.

You actually talk about what is important to them. Who did they come with? What does the person who was with them say about them? And what's important to them? How do they advocate for them?

And so, a lot of it is that merger of this is what I've trained to know. This is what the guidelines say. This is what the studies say. And now I'm meeting you, and I have an opportunity to learn about you. So, how can I take this information? And how can we embrace it in what you want to come up with the best plan?

Dr. Lidia Schapira: That's beautifully stated. You tell us in the narrative that this patient told you that she longed for a quality time until the sun sets, and then you drew or you painted this oil painting, right? It's an oil on canvas, that you titled 'Until the Sun Sets', and you said that you then use the art as a way of expressing yourself, but then also sharing it with others, perhaps gifting it to a loved one. Talk a little bit about how this art helps you to reflect, process, express, and then share?

Dr. Shivani Sud: I think, for me, a lot of the expression has to do with both the patient's journey, as well as my journey here. I started out as an outsider. I didn't understand what these plans meant. How they came together. And then as a trainee, working with Ms. V, I was able to understand, how do we actually use radiation to give her a short course of treatment, so she can get back to that vibrant life that she was enjoying, that quality life that she wanted, until the sun sets?

And in her case, especially, beyond just the radiation, she taught me so much about what we strive to do as providers and where our limitations are. So, I found myself very enthusiastic about treating this early-stage tumor. I had all the statistics about what the control rates were, and everything of that nature.

I remember her being very pragmatic about her multiple comorbidities and whether or not she felt she would derive a lot of benefit from treatment. And indeed, in the end, she was right. You could argue there might not have been a lot of benefit from treatment, because she passed away, a few months after we treated her, from those other comorbidities. But I remember after she passed away, and I saw that chart notification, it made me rethink all of our conversations, and that was one of those moments where you pause and you say, 'What did she want? And what was I trying to achieve? And where is the overlap between the two of them?'

And so, my target in the moment was that gross tumor volume. It was that nodule in the lung that I had circled, it was the hot spot in that dose cloud. And what I was trying to achieve for her was short treatment so she can get back to her day-to-day life. That meant I needed a hot dose in the center. I needed things to be cool and calm around the periphery. So, I didn't damage too much lung. And then I thought about this sunset, and there was this target volume. There was light because she was so light, so bright, so vibrant. And I had that sun setting into a calm ocean, not a turbulent one, to reflect her pragmatism, her ability to stay calm, cool, collected in the face of not only lung cancer but all of these other comorbidities. And so, really, it was meant to be 'What does she want? What is she stating? How do we accomplish it for her? And how do we put that forward in a visual narrative that someone else can understand and appreciate aside from, here are some colorful isodose lines that happened to look nice?'

Dr. Lidia Schapira: I must say I find it very inspiring to hear you talk because you talk about radiation oncology, being a technical field and I hear in your voice, everything about connection and mission-driven work.

So, I think it's beautiful. The idea is that you're sort of translating and applying what you hear from the human being who is bringing you this disease into your thinking and crafting your dose and your delivery. That's really very beautiful. I wonder if you can share with us a little bit about your comment about the importance of the caregiver story. And in the essay, you say that perhaps some of your response to your patients was also impacted by your experience as a caregiver for your mom when she was undergoing radiation. Can you share a little with the readers and listeners?

Dr. Shivani Sud: I think this is part of the reason why Lily's situation and her journey resonated so closely with me. She and her mother were an inspirational duo, regardless, but I think there was this extra level of connection, as we took care of Lilly because my mother was about to start her radiation treatments herself.

This is another one of those examples, where, as a trainee especially, it feels like you start off as an outsider, and then you're part of the system. And then here, I was, not necessarily, you know, I wasn't part of my mother's radiation treatment delivery team, but I was still a radiation oncologist in training. And here I was sitting there by her side, trusting the system that I was once an outsider to, and then was once part of, but from a different vantage point. And so that's kind of those shifts in where the chair is located. And in chart rounds, it was along the periphery for the medical students, and then you're sitting in the main seat as the radiation oncologist. And now you're sitting in the chair along the wall reserved for family members.

I think the role of a caregiver is tremendously important in terms of caring for patients. First, of course, for the patient's well-being for them to have someone to speak with, at least that was the case with my mother. We would often talk about her symptoms, and what she was afraid of, what she wanted out of treatment, the parts of radiation that were scary and nerve-wracking to her.

And it was interesting to now be on this cusp and, had her tumor arisen five years before, I wouldn't be able to speak both languages of daughter and radiation oncologist. But given the point in time, there were many moments where I could reassure her. And there were also many moments where, after I reassured her, I would then sit there and say, 'Oh, dear, is this actually going to work?'

You have all this training, but then you kind of pause and you say, 'Well, do I believe it?' And you think about things a little bit differently, again, when you're not necessarily in the system, but you understand the system, but you're sitting in a different position.

Dr. Lidia Schapira: You're clearly inside the system. Now, my final couple of questions are these, one is what motivated you to write and publish the story?

Dr. Shivani Sud: The paintings themselves arose from seeing these visual narratives. And essentially the same way that a writer likes to put thoughts to paper, I wanted to put paint to canvas, because that was the way that I was going to remember this connection that I had made. And this was the best way that I would be able to share the connections that I had made with others.

In terms of wanting to pen the story, part of it was giving light and continuity to these experiences of taking care of these two patients who had taught me so much and clearly struck a chord with me in terms of wanting to craft these paintings and to also share with others that there is humanity in our field, there is such a deeper connection that we make. And even though these computer-generated lines might seem so impersonal, and you see us scrolling through scans and things of that nature, there is very much a human connection, a human cause, and purpose behind all of that, and everything we do is centered around the patient. And this for me was just my way of showing a way in which I bring my mind, body, and soul to the work that I do. And take home this work and say, 'This is where it's a part of me.'

Dr. Lidia Schapira: Have you shown your artwork?

Dr. Shivani Sud: I have shown my artwork to a few of my co-residents. A few of my attendings have seen it as well, I haven't widely circulated it at this point in time.

Dr. Lidia Schapira: Shivani, thank you so much for sending us your work, and please remember to keep your humanity about your work. It is inspiring. It is inspiring to hear you. It was really moving to read your essay and to appreciate your artwork. Thank you so much.

Dr. Shivani Sud: Well, thank you so much for having me. Thank you for accepting the piece, for encouraging us to embrace our humanity in the work that we do, and for having the Art of Oncology section. It's a pleasure to be able to join. I really appreciate your taking the time to include me.

Dr. Lidia Schapira: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen.

While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology podcast. This is just one of many ASCO Podcasts. You can find all of the shows at podcast.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

“A Note of Gratitude” by Austin J. Price: A senior resident honors his grandmother and expresses gratitude to a doctor who had a long lasting influence on him and his family.

TRANSCRIPT

Narrator: “A Note of Gratitude” by Austin J. Price, MD-MPH (10.1200/JCO.21.01781)

Mary Ann Richards-Elbrader was many things. Born in rural Kansas in 1936, she was a product of the pre-War Depression Era. That fact, I am sure, had an impact on the type of person she would become—a hard worker to a fault and a fiercely loyal family woman. She was the mother of five, the grandmother to 13 including me, and a friend to all, rarely knowing a stranger. Only a high school graduate herself, she believed wholly in the value of education, something that no other person could ever take away. Owing to that belief, all of her children earned college degrees, something that made her immensely proud. She was quick to anger and even quicker to apologize. Devoutly faithful, she taught her children to believe in something greater than themselves. On a more lighthearted note, she was known to lay back in the recliner after a hard day with a stiffly poured vodka. I recall the kindness ever present in her eyes, seen through large, clunky, 80’s style frames and the lines on her face that easily divulged to the world she was someone who loved to laugh. The fact that she became a patient with cancer in 1995 is quite likely the least interesting thing about her.

My grandmother’s journey with cancer began, as many things did for her, in the service of others. She was a frequent blood donor. After giving blood once, she was found to be anemic and instructed to see her primary care doctor. The diagnosis came swiftly— colorectal cancer. From what I have been told, the goal initially was cure. I was very young and hardly able to grasp the nuances of her clinical course. Nonetheless, I know she had surgery and chemotherapy, and for a while after that, everything seemed fine. My mother and aunts recall a discussion when there was mention of age spots in her liver that would be monitored. That probably seemed harmless at the time, but it sounds so ominous to me now. Indeed after a 1.5-year remission, my grandmother experienced a roaring recurrence, this time in the liver. As tragic as it was, I share these details merely as a prelude to something wonderful.

It was 1998, and my grandmother found herself seeking a second opinion at the University of Nebraska from a medical oncologist named Dr Tempero. As my family recalls, there was a clinical trial for patients with colorectal cancer metastatic to the liver ongoing at that time. My grandmother initially qualified but was soon disqualified for medical reasons. Despite that, our entire family quickly came to thoroughly appreciate this oncologist. What it was about her that resonated so deeply is difficult to express in words. In my mother’s terms, it was her confident, no nonsense, but never cold, demeanor that provided assurance that she knew her stuff while still having her patients’ best interests at heart. She was also very honest from the outset in a compassionate, preparatory way, without becoming bleak. Perhaps most striking, my mother recalls, was their last meeting in Omaha, when she explained that there was no more she could do from a medical prospective. There were tears in her eyes, but she did not cry. She exuded both empathy and resolve, which made her more human but no less professional. My grandmother succumbed to cancer on September 20, 1999. I was 8 years old. I never spoke to her specifically about Dr Tempero, but I remember hearing stories about that doctor in Omaha who was so acutely aware of the human experience.

A decade later, I was about to start my freshman year of college. I had always been reasonably smart, fairly ambitious, and done well in school. However, as an 18-year-old, I shall admit that I was more preoccupied with the social aspects of college than I was with what might happen in 10 years. Slowly, I became more interested in the prospect of going on to medical school. Much of my early childhood had been fraught with my grandmother’s illness and I recalled the various roles physicians had played in her life. My mother always told me, "If you are going to be a doctor, be like Dr Tempero.” I realized early on becoming such a physician would require much more than good grades and perseverance; it would require a constant commitment to being present, humble, and empathetic, without losing the confidence that allowed others to find comfort and value in my assessments. Ultimately, I decided that was a challenge I wanted and needed to pursue. With the unending support of my family and friends, I got into medical school and graduated in May 2019.

I am now an internal medicine resident in San Francisco. My residency experience has been greatly different from what I anticipated. As the COVID-19 pandemic descended on our hospital, I found myself as an intern charged with facilitating end-of-life discussions through FaceTime, fully clad in personal protective equipment. Continually, I had to explain to families of the critically ill why they could not visit their loved ones. There was no instruction manual on how to have such conversations, but I know every day I channeled what I had garnered from my own family’s experiences with the health care system. I am unsure if I succeeded in the ways that Dr Tempero did, but I have never stopped trying.

In December 2020, I was triaging patients from the emergency department. While gathering the history on one patient, I asked “who is your oncologist?” When he replied, “Dr Tempero,” I froze. Surely it could not be the same doctor, the same one I had heard about since I was 8 years old? The one whose unique abilities I would always tried to emulate? When I left the room, it did not take much time on Google to realize it was. I shared portions of this story with my patient, who was extremely complimentary of her. That evening, when I got home, I called my mother to share this truly cathartic experience. Ultimately, it was she who implored me to personally reach out. I sat down at my desk and wrote her a note of gratitude. The following day I got an email notification while at work. I waited until I had a few minutes to read her response in privacy:

Dear Austin,

Your letter is, without a doubt, the most touching

letter I have ever received. I know how busy you must

be right now, and I was doubly honored to know that

you took the time to write this thoughtful message.

Thank you from the bottom of my heart.

I have had the privilege of helping so many patients

over the years and each one becomes a gift. I may not

be able to turn the course of their disease but I can

always make the journey easier.

On a Wednesday evening in early May 2021, a little over 23 years after she was my grandmother’s doctor in Omaha, I met Dr Tempero for the first time. I joined her and her husband at their apartment in San Francisco for a glass of wine. We discussed medicine, our mutual love of travel, and of course the unique situation that precipitated our meeting. I could easily perceive the qualities my family had always admired about her. She was interested in my story and my goals, but yet forthcoming about her life, family, and career. Her persona was welcoming, but yet demanded respect. Two hours later, she walked me downstairs and waited until my Uber arrived at her door. As I rode across the city, I contemplated the miraculousness of these events. I wished, as I always will, that I had more memories of my grandmother that did not center upon her illness, but the reality is I do not. What I do have is the memory of this encounter that has left me with a sense of inner peace and optimism, reassured that I am exactly where I am meant to be.

I write this in gratitude to a doctor, who had no way of knowing her kindnesses would have such lasting influence. Of course, I also hope to honor my grandmother’s legacy. I know she would be honored to see how her own misfortune somehow managed to be the genesis of such positivity in my life. I believe she would also challenge us all, as do I, to be like that doctor in Omaha.

Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of 9 programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care.

You can find all of the shows including this one at podcast.asco.org. I'm your host Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University.

With me today is Dr. Austin Price, a senior resident in internal medicine at California Pacific Medical Center, soon to be an infectious disease fellow at the University of Kansas. We'll be discussing his Art of Oncology article, “A Note of Gratitude”. Our guest has no disclosures. Austin, welcome to our podcast.

Dr. Austin Price: Thank you very much. Thanks for having me. I’m happy to be here.

Dr. Lidia Schapira: Let me start by asking if you are, in addition to a writer, also an avid reader?

Dr. Austin Price: Yes, in the past at least I have been somewhat stymied by going into residency, but in the past, I liked to read a lot.

Dr. Lidia Schapira: So, tell me a little bit about your past readings and maybe favorite authors or books, something you'd like to share with our listeners.

Dr. Austin Price: I like to read about medical history. And so, one of my favorite books actually is by Dr. Paul Offit, and it talks about the early days of vaccines and how there was, I think it's called The Cutter Incident, but it's a great book.

I may be misquoting the actual name, but great book. When I was in Baltimore, and doing my master's, he gave some guest lectures. And that's where I became acquainted with some of his work, I like reading that.

So, those are the kinds of things that I really enjoy. And then I think, of course, I have always really enjoyed F. Scott Fitzgerald, even from high school, and Hemingway.

Dr. Lidia Schapira: Very classically trained. Tell me a little bit about writing. Writing is a way of sharing an experience or perhaps processing a difficult encounter with a patient, is that something that you routinely do or have thought of?

Dr. Austin Price: Yeah, it's definitely become something that's been more robust as I've gone through residency. I think part of that certainly had to do with the pandemic, and just not being able to be as close with people and have those personal relationships. And I found myself kind of cut off, maybe from a support system that I would have otherwise had, being in California with most of my friends and family in the Midwest.

And so, I used writing as a way to kind of compartmentalize my feelings and my interactions with patients and to check in with myself. And I find that it's therapeutic and also enjoyable.

Dr. Lidia Schapira: That's fantastic. Let's talk about the essay that you submitted and we published in Art of Oncology, which is a way of honoring the memory of your grandmother, who had cancer when you were a child, and also talks about your sense of vocation and this ideal that was held up to you by your family of aspiring to be as empathic and wise, as a doctor, who is an oncologist who helped your grandmother. Let's start a little bit with your grandmother's illness and how you remember that now that you are a physician.

Dr. Austin Price: Yeah, certainly. I mean, I just remember as a child, her getting very sick, and finding out that she had cancer, and knowing that that was a bad thing, but not really knowing any of the details of it.

As it turned out, she had colorectal cancer, and had surgery, for a short time she seemed okay. And then she got sick again, this time with metastatic disease to the liver. And of course, she was very sick then and ended up seeking out a second opinion from an oncologist who becomes the person in the story that I write about, in Omaha.

At that time, there really wasn't anything that could be done to save her life, essentially. But the interactions that they had were very impactful to both her and the rest of our family. So much so that all through my life, my family members said, if you want to become a doctor, which I thought kind of early on, I did, that I should be like this particular person, Dr. Tempero. And so, she had just always been this kind of person on a pedestal, if you will.

Dr. Lidia Schapira: Let's talk a little bit about the impact that Dr. Tempero and her consultation had on your family. Can you tell me a little bit more about how they talked about that particular meeting?

Many of us who are in oncology and have been for a long time often talk about the fact that there can be a therapeutic relationship between the oncologist and the patient and the family that can actually help during difficult times and even through bereavement. But it's so interesting to me to hear you speak about it from the perspective of a family member. Tell me a little bit about how that relationship impacted the way the family understood the illness and how they went through their loss?

Dr. Austin Price: I definitely think that there was a therapeutic relationship established. And I think in a way, Dr. Tempero managed to be preparatory in the sense that she knew that the outcome was likely not going to be good.

I think she did that without ever being bleak or ever losing hope, in doing so she really kind of helped, in her own way, move us slowly towards accepting reality, and then learning how to move forward and enjoy the time that we had left together.

I think all of my mom's siblings remember her in the same way, they really trusted her in such a robust way that her assessment that there really wasn't anything else medically that could be done, really helped them to come to terms with it and to refocus their goals, and those goals being to spend as much quality time with my grandmother that they could.

Dr. Lidia Schapira: And as you've gone through your medical training, I imagine that they'll have to dangle this idea of this ideal doctor in front of you more than once. How have you interpreted or internalized this aspiration to also be wise, empathic and so kind to your patients?

Dr. Austin Price: Yeah, it's definitely something that my mother in particular is always reminding me to do, because it's not always easy, as we all know. And there are times when I'm frustrated and tired and all those sorts of things.

So, she and I've had many conversations where I'm maybe lamenting about feeling overworked or this or that. And she's always reminding me to be present and to realize that, although I'm tired that I'm oftentimes interfacing with people at bad points in their life.

So, I always try to keep that at the forefront of my mind and try to decompress before each patient interaction, in hopes that I can be at least to some degree like Dr. Tempero was for my family. I'm sure that I don't always succeed in the ways that she did, but I hope that I do most of the time.

Dr. Lidia Schapira: I assume Dr. Tempero would reassure you that even she may have a bad day or a bad hour in a day. Your essay has a moment of suspense and a twist in the plot when you find yourself now as a physician in an emergency room looking after a patient who tells you that their oncologist is none other than Dr. Tempero. Tell us a little bit about what that felt like?

Dr. Austin Price: Well, I mean, it was just altogether shocking, honestly, because I had never met her and I really had never even Googled her name in the past. She was just always this person that my mother talked about so much. And then I had come to a kind of honor but I assumed for all I knew that she was still in Omaha.

And so, when I heard this name, I thought, well, how many oncologists named Dr. Tempero are? Well, there's probably more than just her, but I immediately left the room and started to Google and realized, just quickly, that it was her or that I assumed that it was because she had done her training in Omaha at the University of Nebraska.

It was shocking and emotional too, I will say. I immediately remember texting my mom and being like, oh my gosh, this patient just told me that Dr. Tempero was their oncologist. And I have to go back in there and finish the assessment because I kind of had to leave the room to just decompress a little.

Yeah, it was a wonderful feeling and also just one of those moments where you're just like, life is so interesting in the way that you come into contact with people and in situations that are just so unique.

Dr. Lidia Schapira: And then you reached out to her?

Dr. Austin Price: I did. Yeah, my mom told me, she said, she may not have time to get back to you about this but you should at least reach out and explain how this made you feel. And thank her for the way that she treated our family and thanked her for the ways in which she or the idea of her has kind of impacted the type of physician that you aspire to be.

Dr. Lidia Schapira: So, you wrote to her, and she wrote you back. What was that like and what happened after that?

Dr. Austin Price: Well, I just remember being shocked that she wrote back so quickly. I know that she's incredibly busy. And so, I was very happy that she'd written back so quickly. Honestly, when it was written, this all happened at Christmas time. So, I wasn't able to be there because of COVID and working through the holidays. It was just the first time in 30 years that my mom hadn't seen me for the holidays.

So, she was emotional about that. And so, getting to read Dr. Tempero’s response to the family over FaceTime on Christmas, really was kind of like the best gift that they could have gotten. They really enjoyed it. That kind of helped to stifle the blow a little bit of me not being able to be there for the first time.

Dr. Lidia Schapira: I'm just getting teary just thinking about that scene of you're reading this message to the family over FaceTime, and then talking Dr. Tempero invited you to meet her, and you had a long conversation, tell us a little bit or share with us what you feel is appropriate so that we can understand how important that reunion was for both of you?

Dr. Austin Price: Yeah, sure. From the first response email, she said, 'I would like for us to get together and for us to meet in person when it's safe to do so', because when this interaction initially happened, none of us had been vaccinated yet, and so we're still in the throes of COVID and still petrified and all those things.

And so, once we had been vaccinated, I reached out to her and said, I actually have started to write this essay, and I just wanted to know your thoughts on it. And she read it and she said, and this was many iterations ago when it wasn't as good as I think it is now, but she was like, 'Oh, I'm very much in support of this and I'm very honored, and by the way, we're vaccinated now and it's time for us to finally meet.' So, we did. It was great.

I met her and her husband at their apartment in Mission Bay in San Francisco. We just had a lovely evening, had a glass of wine, some hors d'oeuvres, and just talked about this unique situation that had brought us together, and also talked a lot about my life and what I want to do in my career and my future.

She was more interested in me than sharing so much about her life, but was very forthcoming when I would ask her questions as well, then also just had this kind of commanding aura, but welcoming at the same time, just very likable. I don't know how to explain it, other than that it was amazing and I was so thrilled to experience it.

Dr. Lidia Schapira: I think you've explained it very well. It's a beautiful story for us to read, for all of us who have been in oncology for all these years, and those who are just starting, it's really inspiring.

We think a lot about mentoring our students or junior faculty, but the idea that we in our clinical roles, can also have sort of in a way an indirect mentorship, relationship with or an influence with other young members of the families is really beautiful and moving.

I thank you so much for having sent it to us and for sharing that experience. Is there something else, Austin, that you would like our readers and listeners to know about the essay itself, your family, or the intention that you had that brought you to not only write but share your writing so publicly?

Dr. Austin Price: Yeah, I hope to honor my grandmother, because I think it's been interesting, this experience brought me a lot of joy, and I think it brought our family a lot of joy.

The fact that that came from such a sad place and sad reality, I think is really great. For clinicians, it's just really important to realize how far-reaching our interactions with patients can be because we are seeing them, oftentimes, really in bad times of their lives, times that they're going to remember for a long time. And so, we can then be remembered in kind of good ways and bad.

I think it's so unique in the situation that in an interaction that Dr. Tempero had with my family, nearly a quarter-century ago, it only took the mention of her name, to bring back this whole flood of memories and spawn all of this. I think that's really cool and something that we should always be cognizant of. We have very far-reaching impacts for our patients. I just think that that's cool, and a good thing to be reminded of.

Dr. Lidia Schapira: I think it's very cool too and I thank you so much, Austin, for sharing your essay and for taking part in this conversation.

Dr. Austin Price: Thank you for having me.

Dr. Lidia Schapira: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology Podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology Podcast. This is just one of many ASCOs podcasts. You can find all of the shows at podcast.asco.org

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

Listen to ASCO’s JCO Oncology Practice essay, “Patient is Otherwise Healthy” by Dr. Scott Capozza, Board Certified Oncology Physical Therapist at Smilow Cancer Hospital Adult Cancer Survivorship Clinic at Yale Cancer Center. The essay is followed by an interview with Capozza and host Dr. Lidia Schapira. Capozza shares his personal experience with the long-term effects of cancer treatment.

TRANSCRIPT

‘Patient Is Otherwise Healthy’ by Scott J. Capozza, PT, MSPT 

Let me start by saying: I know I am one of the fortunate ones.

Being diagnosed with cancer at any age puts many in a tailspin. I was no different when I was diagnosed with stage II testicular cancer at age 22 years. I was still in graduate school, completing my physical therapy program; suddenly, I had to schedule an orchiectomy, retroperitoneal lymph node dissection, and two cycles of chemotherapy around lectures, laboratory work, and practical examinations. Fast forward 20 years and I have an unbelievably supportive wife who has seen me through so much of my long-term survivorship concerns.  

Despite my fertility challenges, we are so very fortunate that my wife was able to conceive three healthy, happy, and strong kids (conceived only through the roller coaster that is fertility preservation and reproduction medicine, which so many adolescent and young adult survivors must deal with and is emotionally very challenging, but that is a discussion for another day). I have a great career as a board-certified physical therapist in oncology, where I can help enhance the physical well-being of patients throughout the cancer care continuum. The journey to this path as a survivor was not a straight line, though that also is a discussion for another day. 

What I do not remember signing up for was all the late and long-term side effects of cancer treatment, or maybe I did sign for them in a sort of deal with the devil so that I could finish PT school on time and return to my precancer life of running and being with my friends. We sign on the dotted line to rid the cancer from our bodies, but just like the mortgage, student loans, and back taxes, we end up having to pay in the end. Unfortunately, paying off this debt comes with a high interest rate (a multitude of adverse effects) heaped on top of the principal balance. 

And while it would be very easy to blame my hyperlipidemia on my cancer treatments,1 I am pretty sure there is a likely strong genetic component. My grandmother had high cholesterol for as long as I could remember. As your quintessential Italian grandmother, she was 105 pounds soaking wet and ate like a bird (while being insulted if I did not have a 4th helping of her lasagna) but had to take her blasted pills for high cholesterol for all her adult life. She died a month short of her 103rd birthday and was still sharp as a tack until the very end. I will gladly sign on the dotted line for that outcome.

My immediate postcancer treatment years were great. I resumed running and ran several marathons, returned to a relatively normal social life, and started along my career. I met my wife, and she was enthusiastically willing to live her life with a cancer survivor. Marriage, house, kids, job…everything was going great.

Until things started going downhill.

About 10 years postchemotherapy, I noticed that my exercise tolerance was decreasing. It was harder and harder to keep up with friends on our long runs. I felt more fatigued overall. I went from running 10 miles to seven to five to now barely being able to complete two miles. My chest would feel tight as if a vise was clamping down on my ribs. Running up short hills in my neighborhood, which I had routinely done in the past, felt like I was ascending Mount Everest without supplemental oxygen or Sherpa support. 

When I brought this up to my primary care physician, he looked perplexed. I am young(ish), no family history of heart disease, nonsmoker, healthy weight, and only enjoy a hard cider once a week. He performed an ECG in the office, just to double check to make sure I was not crazy.  

When my heart rhythms started throwing out inverted T-waves, his eyes got larger. He said that I did not fit the description of someone who should be experiencing these symptoms. 

“I had cancer, remember?” I remind him although he is very familiar with my medical history and we know each other well.

“Oh. Yeah.” My doctor nods…. 

My doctor thankfully took my concerns seriously and directed me to a series of referrals to cardiac and pulmonary specialists. Through the Pandora's box which is patient access to electronic medical records, I was able to read his postvisit report. He very accurately described the results of the physical examination and our conversation. He did write in his report that he would be placing referrals to cardiology and pulmonology. It was a very thorough evaluation, and I could tell that he was truly listening to me and not dismissing my concerns. What caught my eye, though, was the opening line to his assessment: “Patient is an otherwise healthy 42-year-old male…”

Otherwise healthy? I have high cholesterol; had to endure heartache and struggle to have a family because of treatment-induced fertility issues; I wear hearing aids because of cisplatin induced ototoxicity; and now, I have to go for a full cardiopulmonary work-up, all because, I had testicular cancer at age 22 years. To me it did not feel like that I was otherwise healthy. To further work up my symptoms, I was scheduled for cardiac testing. I have a new appreciation for what my own patients go through when they have to get magnetic resonance imaging (MRI) after I had a cardiac stress MRI. I had no idea just how tiny and claustrophobia-inducing an MRI machine is, so now I nod my head in agreement with my patients when they tell me how anxiety-producing it is to get an MRI. I had a treadmill stress test and echocardiogram, and these all came to the same conclusion: I have a thickened left ventricle in my heart, which throws off the ECGs but is just my normal anatomy. Phew. 

When I went for my pulmonary function test (PFT), though, the results were different. The pulmonologist came in with that same perplexed look, as he is expecting to see someone other than an early 40s, healthy weight individual sitting there. Our conversation went something like this:

Pulmonologist: Do you, or did you ever, smoke?

Me: No.

Pulmonologist: Do you have carpets, rugs, or animals at your house? 

Me: No.

Pulmonologist: Do you work in a factory or someplace where you're surrounded by potentially toxic chemicals?

Me: No.

Pulmonologist: Do you think you gave your best effort on the PFT?

Me (slightly annoyed): Yes.

Pulmonologist: I don't get it; you have the lungs of someone with chronic obstructive lung disease, but you don't fit into any of the risk factors.

Me: I had bleomycin as part of my chemotherapy regiment for testicular cancer 20 years ago.

 Pulmonologist: Oh.

Yeah. Oh. 

This is the crux of long-term survivorship: We look OK on the outside, but inside our body systems deteriorate faster than the noncancer population.2 For pediatric cancer and adolescents and young adult cancer survivors who could potentially have decades of life ahead of them, these late and long-term side effects are a perpetual consequence for surviving cancer. There is no light at the end of tunnel for us; the tunnel extends endlessly, and we grasp for any daylight we can to help us navigate the darkness moving forward. While there have been multiple studies addressing the long-term toxicity sequelae of cancer therapy, there is still inadequate understanding of optimal screening, risk reduction, and management and inadequate awareness of potential late effects among both medical professionals and survivors alike.3

Given the complexity of long-term toxicities for long-term survivors, a multidisciplinary team of health professionals can provide a comprehensive approach to patient care. For me, a key member of this team was the cardiac advanced practice nurse, who called me at 4:45 pm on a Friday afternoon to tell me that my cardiac evaluation was normal. Physical therapists do this by addressing fatigue, balance deficits, and functional decline through our multitude of rehabilitation tools. Cardiologists, pulmonologists, primary care physicians, dietitians, and mental health care workers can all meaningfully contribute to the well-being and long-term care of cancer survivors. The many health care providers in the lives of cancer survivors can also empower through education. However, the education pathway ends up being a two-way street, as so often it is the survivor who has to educate the nononcology provider about our internal physiological needs that belie our external appearance. 

As for me, I am trying out new inhalers to help with my breathing. I take a low-dose statin every morning with breakfast. I am now plugged into annual cardiac follow-ups. I do not run anymore, though, as the psychological toll of not being what I once was has affected me more than the physical toll. I march on, trying to be the best husband, father, physical therapist, and cancer survivorship advocate that I can be. 

While we may be living clinically with no evidence of disease, we live with the evidence of the history of our disease every day. Like petrified trees or fossilized shells, cancer treatments leave permanent physical and psychological reminders of our cancer experience. As greater attention is being focused on the optimized management of long-term toxicities in cancer survivorship, my sincere hope is that there will be effort to educate cancer and noncancer medical staff alike about the real physical and psychosocial adverse effects as well as advances in treatment that will both prevent development of long-term toxicity and yield better solutions for when they do occur. I hope better options will be available to all cancer survivors with all stages and all disease types in the not-so-distant future.

I am OK, really, but I am not sure ‘otherwise healthy’ really applies to me.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Scott Capozza, Board Certified Oncology Physical Therapist at Smilow Cancer Hospital at the Yale Cancer Center. In this episode, we will be discussing his Art of Oncology article, “Patient is Otherwise Healthy.”  

At the time of this recording, our guest has no disclosures.  

Scott, welcome to our podcast and thank you for joining us.

Scott Capozza: Thank you very much for having me. This is a great honor.

Dr. Lidia Schapira: I look forward to chatting with you about this. First of all, what a great title. How did the title and the idea of sharing your experience with this audience, the readers of JCO OP and JCO publications, come to you? Tell us a little bit about the motivation and the inspiration.

Scott Capozza: So the title actually came from my doctor's note, as I alluded to in the article, the Pandora's Box, so to speak, of patient access to medical records. I was reading his assessment of my regular wellness visit. And in that visit, I had discussed that I was having some breathing issues and some endurance issues with running, and I just didn't feel myself. And I knew that I hadn't had any significant cardio or pulmonary workups anytime recently. On top of that, we'd already discussed some of my other comorbidities, like my blood pressure, that sort of thing. So his intro line was “Patient is a 42-year-old otherwise healthy male.” Well, that's what caught my eye. I said, “Am I really otherwise healthy? I've got high cholesterol. I have this history of cancer. I am dealing with all kinds of late effects, and we're working those late effects up. And so am I truly otherwise healthy?” And I love my PCP, and he listens to me. And so I'm grateful for him and for him taking me seriously, because not everybody has that. Not every survivor has that person, that quarterback, so to speak.  

So that was really what kind of drove me to write the article. It was just an idea that it was in my head. I did not write the article right away. I'm now 48. So this was actually even a couple of years ago. But I think I wrote it because I really was writing it more for the non oncology provider, for the PCPs, and for the pulmonologists and the cardiologists who don't work in the oncology space like you and I do, to be cognizant of these late effects. And just because somebody is a year out from treatment, five years out from treatment, or in my case, 20 years out from treatment, that these late effects are real and they can play havoc with our quality of life.

Dr. Lidia Schapira: So let me talk a little bit about nomenclature and the semantics. You know this field very well, and you know that not every person with a history of cancer identifies as a survivor. But the term is really helpful for us. And in the original article that Fitzhugh Mullan wrote in New England Journal called the “Seasons of Survival,” he reflected as a physician with cancer that you go through different periods in your survivorship, journey or life. Can you tell us a little bit about that and what it's been for you? When did you feel that you were a cancer survivor? Do you use the term and what have those seasons or those stages felt like for you?

Scott Capozza: That's a great question. And for my old patients, I have this conversation with them as well. For me specifically, yes, I do identify as a cancer survivor. I will say, though, that when I was going through my treatments, I did not identify with that word. I also think that because I was young, I was 22, 23 at the time of my diagnosis, and I did not want any association with cancer, that I really did not want that label attached to me. At that time, I was a physical therapy student and a runner. Full disclosure, I'm a Boston Red Sox fan. You can hold that against me if you want. So I didn't want this extra label, so I didn't want it anyway in the first place. I do, I remember having a conversation with my nurses, and they said, “Oh, you should go to this walk or whatever that was happening for cancer survivors.” And I said, “But I'm in the middle of chemo. I've still got my port. And I don't think I should go because I'm not done with treatment.” And so that's why I think it's great that we have, the American Cancer Society and NCI have come out with very clear definitions that say that a person is a cancer survivor from the mode of diagnosis, and I use that for my own patients as well, because they have that same question. They ask me, “Am I really a survivor? Am I really done?” That sort of thing. And I say, no, I go by those definitions now. And so I always frame it as, you have to survive the words “You have cancer.” So that's me with the relationship with the term survivor.  

To your other point of the question, as far as the seasons of survivorship. Absolutely. And I think that we see this more prevalently with our younger population, with our pediatric survivors, and for me, as an adolescent, young adult survivor, an AYA. So I have gone through these seasons of survivorship. When I was diagnosed, I was young and I was single and I was finishing school. That's one thing. I was not dating anybody. So when I did just start to date somebody and move towards marriage and that sort of thing, and all of a sudden, now my fertility issues, because of my treatments, now that came to the forefront. So that became a new season, so to speak. How are we going to tackle that? And now as a father, that's a different season because I have three children, two boys, and it's on my mind that they have my genetic makeup. So are they at higher risk of developing testicular cancer because of me? So I'm in a different season now than I was when I was single and 25. 

Dr. Lidia Schapira: And so you also talk about having cisplatin induced ototoxicity. And now this latest problem, which is the bleomycin induced lung problem. That is what sort of unraveled this new season of trying to put these pieces together. How have you thought about this and perhaps shared it with your wife and your family? This idea that the exposures you had to toxic drugs which cured you and gave you this fortunate possibility of being a long term survivor keep on giving, that they keep on manifesting themselves. And fortunately, you have, it seems, a very receptive primary care doctor who listens but may not be particularly able to guide you through all this and may not know. So he's sort of taking his cues from you. How do you negotiate all this? The idea that there may still be something that's going to happen to you as a result of these exposures?

Scott Capozza: Being vigilant, I think, is really important. And I think open lines of communication with my providers, open lines of communication with my wife. And also, again, my children are at this point now where I can have those conversations with them. I don't think that I could have done that when they were younger, but now I think they can start to understand why daddy wears hearing aids now is because daddy had to get a certain medicine to help get him healthy, to help get rid of the cancer. So to frame it in that context, I think it makes it easier for them to understand why I have this cytotoxicity from cisplatin. And they even know now with my pulmonary issues that daddy can't necessarily run with them. That was always going to be a goal. I was going to be able to run with my children, and I can't do that. I am still able to bike. It does not stress my pulmonary system as much as running does. So we are able to cycle as a family, and so we are able to do that. 

But as far as other late effects that might show up another five years or 10 years from now, those are things that I will continue to have those conversations with my PCP to say, do we need to continue to do cardiac screening every so often? Do we need to continue to do pulmonary screenings, blood work, that sort of thing? I also know that I am very fortunate that I work in the field, so I am surrounded by it, which sometimes is good and sometimes can be a little discerning, knowing what's out there also. So it is an interesting balance to be able to wear both of those hats at the same time.

Dr. Lidia Schapira: I have a couple questions that arose to me reading your essay. Now, I am an oncologist, so I know you know about these late effects. One of your lines is, this is the crux of long term survivorship that is appearing healthy, being labeled as otherwise healthy, but really having these exposures that predispose you to getting other illnesses and diagnoses. Do you think it would help if your PCP and pulmonologist wrote that you had an exposure to bleomycin in requesting the PFTs? Instead of just saying 42-year-old with such a symptom, 42-year-old with an exposure to bleomycin and dyspnea. Do you think that writing that in your chart, instead of just saying ‘otherwise healthy’, just putting cancer survivor, testicular cancer survivor, and adding the exposures every time they require a test, could that in any way have made your life easier as you reflect back on the last few years? 

Scott Capozza: That's a really interesting question. I never thought of that before, and I think that could go one of two ways. A, it could be validating, but I could see the flip side of that where it's, you're constantly reminded of it. So I don't know that there's a perfect answer to that. I don't know what I would prefer, honestly. If we could hop back in time and change the documentation, then we make an addendum to the documentation. I don't know that I would really want that because obviously I know it. But do I want to continue to see that every time I open up my chart? I don't know. And I can see how it can be frustrating for my patients that when they get through my chart notifications or whatever it might be, that they're constantly reminded by it, and then that can lead to fear of occurrence, and that can lead to anxiety and depression. And all the things that you and I know, being providers in the oncology space, we know that these are all things also that our patients experience. So I don't know. I'll have to think about that a little more.

Dr. Lidia Schapira: Maybe the next essay you send to us is about shared decision making, even, and how this is used, playing it forward a little bit in the cancer record, it's there and prominent. But in your primary care and other records, how important is that as a qualifier? All of these things are really interesting, and I wonder how you have used your personal experience in treating other patients and whether or not you disclose to your own patients that you are a cancer survivor. 

Scott Capozza: I don't lead with it because it's not my story. It's their story. It's their experience. So I never lead with it. I do think that patients are savvy. They do want to know who's on their care team. So I tell this story often that I was working with a young woman with breast cancer. She was still in the middle of treatment. She was very understandably upset. And I was about to say something along those lines of, “I can appreciate what you're going through, because I went through this, too.” And she said, “I know who you are. I looked you up.”

Dr. Lidia Schapira: Wow. 

Scott Capozza: Yes. But she followed that up with saying, “And because I looked you up and because you're a survivor, that's why I want you working with me.” So again, it goes both ways. So in that instance, it did, it did work out. So, no, I never lead with it. I think patients a lot of times just figure it out on their own. If I'm working with a patient and we've been working together for a while, we might have that conversation, then it might come up. But again, it's about our patients. It's about making sure that they have the highest quality care. And so that's why they're at the center of everything that we do. So, no, I don't lead with it.

Dr. Lidia Schapira: So as we wrap up, I have two questions. One is, did you share your essay with your primary care doctor?

Scott Capozza: I have not yet. I have not actually seen him since it was published. My annual physical is coming up later in the summer. I was thinking that I would bring it to him to see what his reaction would be.

Dr. Lidia Schapira: That sounds cool. Will you let me know what he says or she says? And the other question is, since you did decide to put your story in front of an audience of oncology professionals, what is your message to them?

Scott Capozza: I think the message, again, is to listen to your patients. And again, you alluded to it a moment ago, the shared decision making, I think that's so critical. I think that's where we are now, and that's where we need to continue to move as a profession, not just in oncology, but I mean, across all health domains. And so I think that for oncology providers specifically, listen to our patients and to validate those concerns, to educate and then do something about it also, I think, is really critical.

Dr. Lidia Schapira: And involving other members of the multidisciplinary team is key. I mean, we acknowledge we need that during treatment, but I think post-treatment, it's equally important to refer people to think about it, to think about referring for rehabilitation or prehabilitation in certain cases. To minimize the baggage that people carry into survivorship. 

Scott, thank you. Thank you for writing. I wish you good health, and I thank you very much for sending us your story.

So until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO podcast shows asco.org/podcast.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Guest Bio: 

Dr. Scott Capozza is a Board Certified Oncology Physical Therapist at Smilow Cancer Hospital at the Yale Cancer Center.

"Questions for the Oncologist," by Barry Meisenberg: an oncologist struggles to answer a patient’s “Why me?” question.

Transcript

Narrator: Questions for the Oncologist by Barry R. Meisenberg, MD (10.1200/JCO.22.00158)

Go ahead, ask me anything.
Decades of meeting beseeching eyes has prepared me.
Ask me anything except that one thing.
That one thing that neither colleagues nor study has helped me comprehend.

Ask me instead about prognosis; I will be honest, but gentle.
Ask me about side effects; I will use a small spoon so as not to overfill your vessel.
Unfold your notebook.
Ask me anything:

“-how many cases like mine have you seen before?
-what is the nectar of the bone marrow?
-what (and how) should I tell the children?
-is it wise to lay in the sun?

-is it safe to have sex?
-should I get the vaccine?
-what’s next if this doesn’t work?
-what if it were your wife?”

Go ahead, ask me anything.
But please, don’t ask me that one thing.
Don’t ask, “why me?”
You wouldn’t like the answer. I don’t.

I could fill your notebook with a tale of random errors in the genes.
Tiny rivulets of mutation that flow into a tumultuous river.
But, I don’t think of them as errors. Rather, they are Nature’s engine of biodiversity.
Individuals suffer, so that species survive.

“Bad luck” is a second-rate explanation, I know.
So please, don’t ask me that one thing.
Search for a better answer within, as I have.
Unsuccessfully, so far.

Dr. Lidia Schapira: Welcome to JCOs Cancer Stories: The Art of Oncology brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org.

I'm your host, Lidia Schapira. And with me today is Dr. Barry Meisenberg, Chair of Medicine and Director of Academic Affairs at Luminous Health. We'll be discussing his Art of Oncology article: Questions for the Oncologist. Our guest has no disclosures. Barry, welcome to our podcast.

Dr. Barry Meisenberg: Good morning. Thank you very much.

Dr. Lidia Schapira: It's a pleasure to have you. And before we start to talk about your poem, and the reason for your wanting to share this with a broad readership, mostly of Clinical Oncologists, let me start by asking if you are a poet and if you often write to reflect on your experiences as a physician, or for other reasons?

Dr. Barry Meisenberg: Well, I will never give myself that label of poet. I have written several, what I would call reflections on what it is to be an oncologist, which this section of the JCO covers so well.

Sometimes I've submitted work and said it was a poem and the editor said, 'No, this is a vignette.' Another time I thought it was a narrative and someone said, 'We liked your poem.' So, increasingly, I've entered this area reflecting a career's worth of introspective thoughts about what it is we do.

Dr. Lidia Schapira: So let me ask you, given your very particular vantage and your experience, why do you think it's important for us to write and read reflections? What does narrative give us as physicians, as cancer doctors?

Dr. Barry Meisenberg: Well, I think it gives us the other parts of our brain and the other parts of our personality as humans. The most humanistic of all the sciences is medicine. We can't neglect that. Mostly for our own health. But also, I think it makes us better physicians when we think about what we're doing.

You know I think it was a physician author, who said that we walk around in the midst of stories. Every one of our patients has a story, sometimes multiple stories, and if we miss that, and don't really capture that, then we're just sort of functionaries.

Dr. Lidia Schapira: Such an important thought. There's definitely plot. There are characters. There's the scenery. There's all of this very rich life and human content and I couldn't agree with you more.

So, before I ask about this particular essay, what are you reading now or what have you read in the last year that you would recommend to your colleagues?

Dr. Barry Meisenberg: Well, it's interesting you say that because, recording here in April of 2022, I've talked to many of my neighbors about their pandemic hobbies, both medical and nonmedical, and they're, you know, learning to bake, reteaching the piano, and working on developing their rhomboids.

I've been doing a deep dive into the history of other pandemics. I may be little obsessive, but I've been reading about pandemics throughout history, and just appreciating the fact that human nature hasn't changed very much, nor has medical behavior.

So, in Defoe's book, I think it's called Journal of a Plague Year, which by the way, is not history, is a fictional journal but based on reality. We have the same sort of medical charlatanism. We have false hopes. We have people trying to beat the quarantine for their own good.

At the same time, we have just public-oriented behavior as well, feeding those who couldn't be fed or who would become orphaned by the plague. The same thing is true of the 14th-century plague.

It's just remarkable how little we've changed as a species, all the behaviors on display today, both good and bad, were on display then. And so, I've been reading quite a bit about pandemics.

Dr. Lidia Schapira: It’s so interesting. Now, with that, let's focus on your beautiful poem, the question that you can't answer after all your scientific work and after your decades of clinical experience, “Why me?”.

Tell us a little bit about what inspired this poem that I found so moving, and I'm not a great reader of poetry. But this one message was so clear that I think most of our readers will understand the sentiment. What inspired you to write it?

Dr. Barry Meisenberg: Well, I woke up with this one. Sometimes that happens, you wake up with a poem that is nearly fully formed, or a narrative is nearly fully formed in your mind.

Although I did get some excellent suggestions from my reviewers that I do appreciate. And I realized only after it was on paper, that seven years ago, I wrote a piece for a different oncology journal about this issue of random chance. And you may remember, in 2015, there was an article, or a science magazine published an article by Thomas Heti and Bert Vogelstein about their mathematical calculations of errors in stem cell division.

They didn't do any new experiments. They accumulate what was already known, and they were able to correlate that with the incidence of cancer from the cancer databases. And their conclusions were, when stem cells make random errors, there's more likely to be cancer.

Now, they didn't cover every type of cancer. They covered several. And they came up with this idea that cancer is stochastic, that is a random process. Now, stochastic is not a poetic word. And so, we didn't use it in the poem, but random, and that was covered extensively in the New York Times and other media, and a big debate about what it meant.

So, I wrote an essay about that, and I realized it's been on my mind all this time, and whether it's a helpful notion or a harmful notion. Helpful in that patients can understand you didn't do anything to give yourself cancer, despite all the media noise about that, but harmful, potentially harmful, in this idea that maybe my life doesn't have meaning if this is just a random process.

And so, I talk to patients about this when appropriate, because many of them have thought about it. So, it's sort of been on my mind since this article I wrote in 2015. And I must say, it disturbs me that I don't have a good way of explaining that or helping patients overcome this.

Dr. Lidia Schapira: So, when a person asks you why me in some way, I mean, you, first of all, you tell us that you have answers for most of the other questions, what is my prognosis? You can answer. How do I tell the children? You can answer. Is it safe to have sex? You can answer.

But the “why me” question is still with you and still troubles you. What is it, in your view, that a person is really asking you? What is the question behind the question when they say 'why me?'

Dr. Barry Meisenberg: Well, that is the question. And then I think what they're saying is what does my life mean? Yeah, if the answer to Dr. Vogelstein is correct, that it's stochastic, doesn't mean my life doesn't have a meaning. I hope people wouldn’t draw that conclusion.

So, random things happen to people, both nice people, and mean people all the time. I remember when I was in New York doing a year of research at Sloan Kettering, there was a helicopter accident, and it didn't just kill the people in the helicopter, but a piece of the blade broke off and spun out over Manhattan, killing someone who was about to walk into a retail store, totally random. It had an impact on me in how all our lives hang by a thread, or it can, and cancer is like that.

Dr. Lidia Schapira: What I hear in the “why me” question is also sort of a plea for, please reassure me and keep me safe, because this happened, and you have no explanation, I have no explanation. So, it's interesting that you talk about life's meaning. I see it more as a cry for help. If I can't deal with the uncertainty and the chaos of the universe.

Dr. Barry Meisenberg: That's an excellent perspective. And you may well be right, at least for many people. It's almost like a real issue of faith and religion, or more faith and religion. When I say in the piece, 'you have to look inside for that answer, why me and what your life means?' Yeah, people ask questions for a reason. Some of it is just fact downloading, the risk of mucositis, how to treat mucositis, and so on. But other, the more important questions are these.

Dr. Lidia Schapira: And that's one of the beauties, I think, of poetry and why we love to publish great poems because it's almost like a bit of a Rorschach too, right? You can read into it, you can interpret, you can use a poem as a way of exploring an important topic, and bringing perhaps to the surface some of the questions that you also deal with, as a human, instead of only your skill, as an oncologist or as a physician used to counseling people.

Dr. Barry Meisenberg: I think that is one of the values of poetry. I run a program here at this health system that we call the Diastole Hour because it's important for relaxation. You can't live your whole life in systole. That's the message.

And we use poetry a lot, mostly written by patients about their medical experiences, sometimes written by doctors about what it means to be a doctor or be a better doctor. And then, of course, some art that covers medical topics. And the whole goal is to train that other part of our brain to make us better at the business part of being a doctor, and I think the two are related.

Dr. Lidia Schapira: Do you read poetry with your fellows or with your trainees or junior faculty? How do you incorporate this kind of thinking in their professional life? How do you use it to build a community?

Dr. Barry Meisenberg: Well, that's a great point. I wish we could do more. So, I read some poetry. I am not trained in it and I tend to look for poems that one doesn't need to be an expert in the classics to understand and we use them at this event I've told you about. But also, I've been known to sneak them into Grand Rounds presentations and other venues, trying to make people pause and think a little bit about it. There's some wonderful poetry about the physician experience, for sure. And I sort of collect them.

Dr. Lidia Schapira: What are some of your favorite pieces?

Dr. Barry Meisenberg: There's a neurologist named Ginsburg, who has written, I remember one poem, in particular, called “Line Drive”. And it's about a man, presumably, based on a true story, who is explaining to someone their brain tumor anatomy during a hospital visit, and pointing at shadows, but recognizes that he doesn't actually do any touching. He doesn't enter their lives. He doesn't answer all their questions like the one we just talked about. And then he's driving home, and he stops at a little league Park and watches some boys play baseball. And one of the boys is struck by a line drive. And he's so moved, by the way, his teammates gather around him and offer support and touch him and help him that he drives back to the hospital to redo the consultation he had just finished doing, but this time with the touching. I thought that was a wonderful poem.

Dr. Lidia Schapira: It's an amazing poem.

Dr. Barry Meisenberg: I read that poem in Abu Dhabi, actually, to an audience, few of whom knew baseball, so I sort of had to explain it to an audience of oncology professionals. I might have missed my mark, I don't know, but I wanted them to understand certainly the importance of entering patients' lives.

Dr. Lidia Schapira: Have you always felt this way about using narrative and poetry as a means of reflection, self-expression, and dialogue? Or is it something you came to later in your life as a more mature professional?

Dr. Barry Meisenberg: Definitely the latter. I mean, I was fortunate in that I had good cultural capital growing up, but I didn't really incorporate it into my other life, my professional life until I'd say the last 10 years or 15.

I've always been an admirer of Shakespeare, by the way, he wrote about the plague a little bit too, indirectly. And then one time I actually wrote an essay about this: I was given a poem by a patient, who was from Ireland and this is sort of like the national poet of Ireland. And it was his way of telling me, he didn't want any treatment. And the poem is about loss and lamentation that accumulates through life, and all his friends were in the graveyard.

He wasn't interested in therapies that are designed to induce a response rate. He didn't want any treatment. The way he communicated that was through a poem. And I began to understand that really in a more realistic way that poem can do that.

Dr. Lidia Schapira: Well, thank you so much for your insights. It's been a wonderful conversation. Is there something else you would like to tell our listeners and perhaps even a thought for future readers of the poem?

Dr. Barry Meisenberg: By the way, I should say that the name of that poem I just referred to is called “Oft, in a Stilly Night”. It's the first line of an Irish folk song. But I would hope people take the time to indulge. Many medical journals have sections like this, they're usually short. And I will tell you, that's the first thing I read in these medical journals. I hope people will follow that pattern.

Dr. Lidia Schapira: Thank you so much, Barry. It's been a lovely conversation. Thank you for your work, and thanks to the readers. And more next episode of Art of Oncology.

Until next time, thank you for listening to this JCOs Cancer Stories: The Art of Oncology Podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCOs Cancer Stories: The Art of Oncology Podcast. This is just one of many ASCOs podcasts. You can find all of the shows at podcast.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product or service organization, activity or therapy should not be construed as an ASCO endorsement.

"Wall Street doesn't believe in this target," by Dario Altieri. A scientist shares his 12-year journey that led to the discovery of a drug now in clinic.

TRANSCRIPT

Narrator: Wall Street Doesn’t Believe in This Target by Dario C. Altieri, MD (10.1200/JCO.22.00180)

March 2, 2009. Just published in the Journal of Clinical Investigation.1 And we even got the cover. Twists and turns of heat shock protein-90 (Hsp90), the chaperone, the evolutionary capacitor. Great name and important cancer target. People smiled when I talked about this at the Hsp90 conference. No, no, really there is a lot of it in mitochondria, and only in mitochondria of tumor cells. And, I don’t know why, but Hsp90 drugs don’t touch it: somehow, they don’t get to mitochondria. So, I made my own. Took an old Hsp90 inhibitor, 17-allylamino-17-demethoxygeldanamycin and attached it to triphenylphosphonium, a carrier that basically gets anything into the mitochondria. No, of course, I didn’t do the synthesis in my laboratory. What do I know about medicinal chemistry? Outsourced it. Like sneakers and sweaters. And after three months, there it was: an Hsp90 inhibitor that only goes to the mitochondria, causes aggregation of a lot of proteins, and kills tumor cells in minutes. Makes sense, right? Mitochondria must control protein folding, especially in cancer, and they do it with chaperones. Inhibit the process and tumor cells can’t cope. Normal cells don’t seem to mind. So, strong preclinical activity, and against a lot of different tumor types. Better than any other Hsp90 inhibitor. Good safety. Totally different mechanism of action. And even a cool name, Gamitrinib.

Tired of curing mice. What if this were to work in people? Ideas are made in academia; drugs are made in companies. Okay, fine, then I’ll launch a startup, spinout, whatever they are called. The (former) doctor-turned scientist now turns entrepreneur, and then captain of industry. Problem is, I am not like that. More like an (aged) boy scout. The inner soapbox says: it belongs to the American taxpayers; they funded it; it’s theirs. Excellent start. What else? If doctors and scientists become businessmen (or businesswomen), who will take care of humanity and discover new things? Perfect for a campaign ad. Sold. Bring it to the patients solely from academia: no pharma, no biotech, no investors, no nothing. Soapbox meme for the day: Yes, we can. It’s going to cost. So? I’ll write a grant, that’s what I do for a living anyway. And the fact that I know zero about drug discovery? Or drug development?

Laboratory-Clinical Transition Award from the Department of Defense. Great title. Three years of funding. Perfect for me. Pass-through money, nothing for the laboratory, but it pays the bills of outsourcing. First things first. Synthesize Good Laboratory Practice (GLP) Gamitrinib. Already getting a pretty good hang on the acronyms. Hey, we made this drug lots of times before and has never taken this long. It’s almost a year and counting. The Department of Defense (DoD) is on my case because I am already behind. What’s going on? Yes, I understand that we don’t make anything in this country anymore. New import permits that need to clear the Indian government? The what? This is just a chemical, not an international incident. Yes, I get it, nothing I can do about it.

My new job is mailman. And telephone operator. Finally shipped the GLP drug for the toxicology. Two animal species, says the US Food and Drug Administration (FDA). Rats and dogs sound good to me. Should I feel sorry for the dogs? Rats not so much. But what if Gamitrinib poisons the mitochondria in the brains? Or hearts? Wait, you said it’s just perfect? Animals are doing great, all of them. And no toxicity at all, like giving them…water. Wow, that’s some news. Feeling quite pleased with myself. See? I said it all along: mitochondria are wired differently in cancer. That’s why the drug is safe for normal tissues. Maybe I should write a review article about that. Serious boost of the citation index. I am sorry, what? Yes, of course I know that the drug is purple. Okay, you filtered it before giving it to the animals and instead of purple it turned white? And you did that to all animals. For the entire time. Oh, what do I think it means? I think it means that you filtered out the drug and we have been giving animals…water. Yes, I get it. I need a new formulation. And start over. Note to self: find a new Contract Research Organization (CRO) that doesn’t give water to the animals.

Formulation experts. Big pharma ex-pats who now have their own CRO. Everybody is an entrepreneur here. Is this drug oral? Nope. Is it soluble in water? Not at all. So, it’s an intravenous (IV) infusion? Yes, that’s what it is. Sorry, then it’s not a drug. It’s not? And what about things like, you know, paclitaxel or doxorubicin? Aren’t they also insoluble and given IV? Last time I checked, we used them for half a century and saved millions. Oh, now we think differently? I see, Fail Fast: that’s how we think now. And mine, whatever it is if it is not a drug, has already failed. Nobody likes to take risks. Soapbox meme for the day: If nobody takes risks, how do we make progress, exactly? So, maybe I am in good company: paclitaxel and doxorubicin would also Fail Fast today.

It’s doable. Nobody likes it but it’s doable. Sterile-filter the emulsion components and then bring the particle size below 200 nm. Nice. How do I do that? With a microfluidizer. And why nobody likes it? Oh, because the microfluidizer is a dirty machine and where you make Good Manufacturing Practice is called a clean room. Impeccable logic. But a place in California may do it. For a fee, of course. Oh, and you have to buy the machine. Buy what? Or lease it, whatever. People may not like it, but the whole thing works like a charm. Except, of course, when the microfluidizer stops for no reason in the middle of the run. Media fill looks good. Drug is stable for months in the new formulation. Release testing coming together nicely.

I am running out of money. Burned through not just one but two DoD grants and all my research kitty. Nothing saved for the swim back: talk about risk-taking. At least the repeat toxicology is paid for and looks good. The drug, the real thing this time, is safe. They even did ECGs on the dogs. Thank goodness I didn’t have to read those, but they are normal: no QTc liability. Can’t drop the ball now, but I really need money. Here is how you do it: silence the inner soapbox and enchant the big pharma suits that are coming over. Use the right words. It’s not early stage anymore. Asset totally derisked. Sure it’s ready for prime time. It works. I am a natural. Maybe I should have done this before. A lot of nodding around the table. The suits must be in awe with the great pharmacokinetics, long half-life, and fabulous safety. A hand goes up. I am sorry? Sales data? Sales of what? What is the unit price? No, no, no, we are not there yet. I haven’t even filed an Investigational New Drug (IND) application.

Something different now. Analysts who advise big-time investors. They don’t wear suits. Sweaters for sure. Maybe black tees a la Steve Jobs. They like new things and totally live by risks. Sounds like my crowd. And don’t forget, they can get tons of money from people who already have tons of money and want to make even more money. My crowd? Voices out of a polyphone. Yes, it is Hsp90. Yeah, the chaperone. Sure, I know, it has been around for a long time. But this is a completely new story: nobody ever tested a cancer drug that goes to a subcellular organelle: that’s really where the action is. Yes, Hsp90. And mitochondria, they used to be bacteria two and a half billion years ago, but they turned out to be important in cancer. I know that too, Hsp90 drugs didn’t fare well in the clinic. Lot of toxicity, basically no efficacy. Yes, very unfortunate. But this one has a completely different mechan…Sure, I would like to hear that perspective. I am sorry, did you say, Wall Street doesn’t believe in this target?

Triaged the first time but funded on the resubmission. Could have been worse. This one is a grant from the National Cancer Institute. And a nice award from the Gateway Foundation is coming too. Enough to pay for the clinical trial. Single site, standard phase I. Accelerated dose escalation. Up to 35 patients with advanced cancer. All comers. Drug vials ready to go. And a fantastic clinical investigator to run the trial. You really don’t want me in the clinic. The only thing missing is IND approval. Right, there is that. No, not a commercial IND, investigator-initiated IND, thank you very much. The FDA people are the nicest in the world. Super-helpful, don’t believe otherwise. Or maybe they just feel sorry for the clueless applicant. Thirty days to respond to the questions. Totally getting a promotion to a higher rank of telephone operator. And publisher of FDA modules. And certifier of United States Pharmacopeia (USP) <85>. recommendations. And fixer of Chemistry, Manufacturing, and Controls deficiencies. Oh, and let’s not forget the specs for polytetrafluoroethylene filters. Then the examiner mutters two words at the end of a phone call. Good luck. Then, nothing. No more questions, e-mails, or phone calls. Right on the thirty-day mark. Were you expecting this? It’s a letter; it says study may proceed.

What would the day look like? The first patient to be dosed. Maybe I should go to the clinic: it’s in town, not far from where I am. I don’t think I can pass muster as one of those confidence-inspiring docs in pharma ads. But I do well as chief executive officer. The cufflinks look good, and so do the shoes. I can impress the family. My Italian accent can pass as straight from South Philly, so I have that also going for me. And I can more than hold my own if I need to talk about Philadelphia Eagles football and worries with Jalen Hurts’ arm for next season. I used to be good with my patients. Or at least I convinced myself of that. Yes, this is an experimental drug straight out of our backyard, right here in Philadelphia. No, I don’t know if it will work, but I sure hope it will. And thank you, thank you so much for being part of the trial. What if I make these people even sicker than they are? I took an oath a long time ago. Anyway, I know the literature on phase I studies, chances are it just won’t do anything, so nobody gets hurt and I am finally done with it. I never thought this moment would arrive.

There is none of that. January 10, 2022. It’s just a late-night e-mail on the anniversary of my mom passing from lung cancer. Hey, the first patient did great at the starting dose of Gamitrinib. No problem whatsoever. The next patient will now get twice the dose. I hope we get that started this month. Happy new year. And that was that. Twelve years, 10 months, and nine days from that Journal of Clinical Investigation paper.1

Affiliation: 1The Wistar Institute, Philadelphia, PA

Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology. I'm Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University. And I'll be the host of this show.

Cancer Stories is brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care.

You can find all of the shows including this one at podcast.asco.org. With me today is Dr. Dario Altieri, president, and CEO at the Wister Institute. We'll be discussing his Art of Oncology article: Wall Street Doesn’t Believe in This Target. Our guest is a named inventor for patent number 2,699,794. Titled: Mitochondria Targeted Anti-Tumor Agents. Dario, welcome to our podcast.

Dr. Dario Altieri: Thank you so much for having me, Lidia. It's a great privilege.

Dr. Lidia Schapira: My first question to you and to our authors is this, people who enjoy writing are usually also readers, what are you reading now?

Dr. Dario Altieri: Well, absolutely it has been a passion of mine since the floods. I am an absolute avid reader of novels, and history, in particular, contemporary history and modern history. Those are my favorite topics.

Dr. Lidia Schapira: Do you read in English, Italian, or other languages?

Dr. Dario Altieri: I typically read in English, even though some of the Italian literature is best read in the native tongue. And so, I am still attached to that.

Dr. Lidia Schapira: You're clearly a very accomplished scientist. But tell me a little bit about your writing in this particular area in what I'll call creative nonfiction. How has this writing helped you perhaps process experiences or communicate with others?

Dr. Dario Atieri: It has been, it's been a passion of mine for a very long time, I think. In finishing up college, of course, my major was contemporary literature and philosophy. The question was whether to continue on in a classic literature career or go to medical school, probably the wrong choice was made. But it has remained with me for a very long time, and it's a form of expression that I truly enjoy.

In writing, this particular contribution was a bit transformative for me. It doesn't happen every time that you write a scientific article to express a little bit about yourself and your passions and dreams.

Dr. Lidia Schapira: Let's talk a little bit about your passions and dreams in this article. You described an intensely personal journey of 12 years that led to the discovery or the availability of this drug now in the clinic. When did you think that you wanted to share this story with your colleagues? And tell me a little bit about the process of writing this article?

Dr. Dario Altieri: It has certainly been a roller coaster experience. I would like to describe it as life-defining and life-changing. I've learned so much and so many things, not just about the process, but also a little bit about myself.

I recognize reaching the clinic, especially in a phase one trial, is really just the beginning. But for me, as a basic scientist, somebody who has seen his last patient in the 13th century. As a basic scientist, that was a little bit of a milestone, and I wanted to share what it took, the experiences that I lived through, especially with our youngest colleagues, scientists, and doctors, starting their own careers in oncology, whether it's basic research, clinical research, translational research, I really don't think it matters. And so, issues of resilience, staying the course, passion, and not really giving up are the parameters that I had hoped to convey with this contribution.

Dr. Lidia Schapira: In your article, I was so impressed by how you used humor, often self-deprecating humor, and the particular narrative style and writing style that you chose and defended as you were revising it.

You know, this choppy phrasing, a staccato, and you said, this is what it feels like, how can I pack it into a small number of words and describe it all? Tell us a little bit about how you allowed your imagination to take over and how you found the proper voice and style for this particular narrative.

Dr. Dario Altieri: Again, it's been a thrilling experience and it's been a thrilling experience to answer to the editors and the reviewers of the JCO, who provided incredible insightful comments.

The challenge was, how do I tell a story without sounding obvious, fright, or expected, and more importantly, without sounding boring? And I think to paraphrase one of our reviewers about this journey. What the reviewer said, the author, that would be me, has encountered many of the absurdities of the path in drug development, something that we don't talk about too much because it's been the realm of a drug company for the longest time.

And so, I wanted to try to capture that absurdity in a positive way. Things that the reviewer indicated, may be second nature to the pharmaceutical industry, but for academic investigators, that’s been publicly funded for 30 years, is not second nature and is unusual, and is a world all in itself.

And so, that was the impetus of trying to use literature advice on short sentences that are really intended to convey the impression of the moment that was what I tried to accomplish.

Dr. Lidia Schapira: Well, you certainly picked a catchy title, and we have not published this sort of article in Art of Oncology before. For our listeners, tell us a little bit about why Wall Street doesn't care about your discovery?

Dr. Dario Altieri: Unfortunately, I think, I mean, I don't know for sure. But I think that dealing with this particular molecule, heat shock protein 90 in the clinic has been difficult.

Hsp90 has long been recognized as an important cancer target. There have been several generations of small molecule inhibitors that have been tested in the clinic. And unfortunately, I hope I'm not offending anybody, but unfortunately, the clinical results of those studies, and some of them moved all the way to really large phase two trials have been disappointing.

And so, that is the idea that perhaps this was a dead target. And therefore, trying to leverage industry or biotechnology interest around it was quite a remarkable challenge.

Dr. Lidia Schapira: What message do you want the young investigators to take away from your story in terms of the collaboration between academia where thoughts start, as you say, in your article, and all of the rest of the partners that you actually need it to bring this discovery and this idea to fruition?

Dr. Dario Altieri: Lydia, this may sound trite, I really hope to convey one simple notion. It's not even a message, it's a very personal account. And that is don't give up. If you have run the controls. If you have done your experiments enough time. If you're convinced of the results, if you explore alternative explanations, and you keep coming back to the same conclusions, go for it.

That has been a little bit of my own personal experience and if there are things that you don't know about, that's perfectly fine. Actually, that is the fun of the process, and the things that I didn't know about drug development, I can fill in the encyclopedia. I've learned some of them through people who have been doing this for a living, for a very long time. And that has been truly inspiring for me, a life lesson and professional lesson about how we can think of a drug target that has been discounted and remain true to the core value of strong basic research and try to advance that to the clinic, whether this will ever become something useful for our patients? I don't have the faintest idea. I certainly hope so. But that would be the experiment that is being done right now in the clinic.

Dr. Lidia Schapira: In your article towards the end, you just give us two little glimpses into something that is personal and meaningful to you by telling us that there's an anniversary of a loss, the passing of your mother from cancer. Can you tell us a little bit more about that, and why you chose to put that sentence just where you did?

Dr. Dario Altieri: I didn't know if anybody would have noticed, frankly, so I appreciate you bringing it up, Lidia. It's been a very personal journey for me as well. Both my parents died of lung cancer. They were a different generation. Both were heavy smokers.

I remember those dates very well and I remember the void that they're passing is created. And so, I thought it was an interesting circumstance, that in fact, the first patient was enrolled in a clinical trial, the notion about that and of course, I am technically conflicted.

So, I am not supposed to know anything about what is happening in the clinic. But it was interesting that the first notion about the first dosing came on that day, on January 10.

Dr. Lidia Schapira: Well, I'm sure other readers will notice that too, the timing of that in the article and the fact that there was some emotion implied, I think, in how you chose to end your story by saying that this had happened in the clinic, but somehow, you were not there, that you had to be removed.

Tell us a little bit more about that, about why you needed to be removed from the clinical site and why do you talk about yourself as a former doctor? In my mind, once you are you always are, but somehow you feel that you need to make the distinction. What does it all mean to you?

Dr. Dario Altieri: Well, Lidia, let me just say you don't want me in the clinic right now. At 64years of age, like I said that the last patient was a very long time ago. I have to say, sometimes I miss those days, just as a personal account. I need to be removed because I'm technically conflicted on the trial, I was the IND holder, and then the FDA asked me to transfer the IND to the clinical investigator as proper because I'm not involved in patient care or research, in this particular case.

And technically, because I am the inventor on a patent, I could potentially stand to benefit financially from the results of the trial, something that is certainly not on my mind, but that I have been reminded of.

And so, I try to stay away as much as I can. Obviously, I think about this every day. But whatever information I can gain, that I can gather from my colleagues across town will be wonderful, but I'm not the one initiating those calls.

Dr. Lidia Schapira: So back to the humorous side of your essay, you say that you've learned to be a telephone operator and a mailman, and a whole bunch of other things. Have those lessons been useful to the other aspects of your life? Or do you see that as a total waste of your time?

Dr. Dario Altieri: Not at all. Not at all. I have been an incredible component and I think I was trying to be humorous and to take myself seriously, but not too seriously. But in fact, maintaining that level of interaction, particularly with aspects of the work that I've never encountered, for instance, regulatory aspects of an early-stage clinical trial with the Food and Drug Administration, that has been part of the life journey and I only have very good things to say about my experience.

You know, it's been interesting, Lidia, being part of the experience of being a telephone operator and a mailman. I had this sense, and I could be completely wrong, but I had this sense that people out there want to see us taking small risks. They want to see testing new drugs, they want to see new targets being somehow examined, developed, if at all possible.

I had the sense that there was support, you know, for the idea, and this was an entirely publicly funded program. I funded both the preclinical and now the clinical trial of Gamitrinib out of the American taxpayer's commitment and in many different study sections, in dealing with the FDA, in dealing with other regulatory consultants, I always get the sense people who wanted to help, then had perhaps the mindset, okay, we don't know whether this is going to work or not but let's give it a try. Let's give it a shot. It was wonderful, that was an absolutely awe-inspiring experience.

Dr. Lidia Schapira: I'm glad they did and I'm glad you shared your experience with all of us. Is there something else that you'd like our listeners or your readers to know about you or this story?

Dr. Dario Altieri: I just would like to say that I would do it again, 12 years, I would do every step of the way but I think I'm done. If I were to start over, I'll do it again, but I don't think I'm ready to do it again with another target.

Dr. Lidia Schapira: And with that, I want to thank you and I want to thank our listeners. Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen.

While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology podcast. This is just one of many of ASCO’s podcasts. You can find all of the shows at the podcast.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product or service organization activity or therapy should not be construed as an ASCO endorsement.

A physician attempts to ease a patient’s pain, a painful moment somewhat eased by the joy of music.

TRANSCRIPT

SPEAKER 1: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

[MUSIC PLAYING]

RICHARD LEITER: Ode to Joy. "Is now an OK time?" I asked as I quietly entered the dimly lit room on a Saturday afternoon. "Yes, we've been waiting for you," my patient's wife Julie responded in the same calm, composed voice she had maintained all week. "Before we start, what questions do you have?" "I think you answered all of them this morning. I'm ready. Tom is ready. We just don't want him to suffer anymore." "OK, we'll get started."

When I was in training, I had seen my preceptors initiate palliative sedation, but this was my first experience doing so as an attending physician. After being dormant for so long, my impostor syndrome returned. Though I was confident that I was taking the clinically-appropriate next step, I was nervous. I asked Tanya, our charge nurse and the nurse who was primarily caring for him over the last few days, to draw up the syringe.

She did so with practiced confidence and handed it to me. I held it between my fingers, wondering how slowly I would need to push it to ensure the 2 milliliters of midazolam went in over a full five minutes. Tanya cleaned off the side port of his IV. I twisted the syringe into place. I looked up at Julie. She squeezed Tom's hand.

I had first heard about Tom nearly a week earlier, when my colleague was handing off the service to me. "He's in his 50s, metastatic cancer. He was home on hospice and came in yesterday with uncontrolled pain. We started him on ketamine and he looks much better. The plan is to wean his ketamine, increase his methadone, and get him back home, hopefully in the next day or two."

Stoic from years of pain from cancer eating away at his bones, Tom lay in bed with his eyes closed, his furrowed brow the only sign of his ongoing agony. When the nurses tried to move him, he screamed. After we weaned his ketamine, his pain quickly worsened. We increased methadone and hydromorphone. Neither gave him adequate relief. We restarted ketamine, but it proved to be no match for his pain.

On rounds one morning, Julie asked if Tom could make it home. I told her I didn't think so and explained how worried I was about his pain. If we sent him home, I was concerned the pain would force him to come right back. Julie told me her kids would be disappointed, but that they'd understand, as she did. Easing Tom's suffering was more important. The hospital bed his family had set up in the living room would remain empty, a physical manifestation of cancer's unending cruelty.

The hospital bed his family had set up in the living room would remain empty, a physical manifestation of cancer's unending cruelty. We talked about what would come next. If further titrating his medications proved ineffective, which I worried it would be, we would need to consider palliative sedation. "Whatever you need to do," Julie responded, her voice barely betraying the exhaustion I imagine she was feeling.

Palliative sedation is a procedure used to relieve refractory suffering in a terminally-ill patient. Clinicians carefully sedate the patient, often to the point of unconsciousness, to relieve symptoms such as pain, nausea, shortness of breath, or agitated delirium. It is a procedure of last resort, and in our hospital, requires the approval of two attending physicians and the unit's nursing director.

Though palliative sedation may shorten a patient's life, ethicists and clinicians have long regarded it as acceptable because its goal is not to hasten death but rather to relieve suffering. This is known as the doctrine of double effect, by which an action with at least one possible good effect and at least one possible bad effect can be morally permissible. Back in his room on that Saturday afternoon, I looked over at Tanya, the nurse, then at Harry, my fellow, who had been caring for Tom all week.

I took in a breath under my mask, then slowly began to inject the contents of the syringe into his IV. In the quiet, I could hear the music coming from Julie's phone, which she had placed on the pillow beside his head. A pianist played a slow, mournful rendition of the final movement of Beethoven's Ninth Symphony, the Ode to Joy. In my head, I sang along.

(SINGING) Joyful, joyful, we adore thee.

I went to a traditionally Anglican school. 600 boys of all faiths and backgrounds, we'd rise each morning in assembly and sing hymns together. We cheered, yelled, and thumped on our pews-- a few minutes of raucous togetherness before we devolved into the usual bullies and cliques for the rest of the day. Tom's room couldn't have been more different. He remained completely still.

Though Julie held his hand, he was alone, as we all felt in that room.

(SINGING) Hearts unfold like flowers before thee, opening to the sun above.

I felt the soft resistance of the syringe's plunger hitting the barrel. I looked back up at Tom. His chest fell, but didn't rise. I waited. He didn't breathe. The music slowed down. I felt Harry's eyes pivoting back and forth between my face and Tom's chest. I fixed my eyes on Julie's hands wrapped around her husband's. Despite the tension of the last week, she was calm, gentle.

I matched my breath to hers. If she could exude such peace, so could I, I thought. I noticed Tom's hands. He had a piano player's fingers, long and slender. I pictured him sitting at the piano in their living room. I wondered who would take his place on the bench. I wondered if he could hear the song playing beside him. Had he and Julie chosen it for this moment? Did it bring back joyful memories, as it did for me?

(SINGING) Melt the clouds of sin and sadness, drive the dark of doubt away.

He didn't breathe. Did my first attempt at palliative sedation become euthanasia? Even if so, was this OK? I rehashed our conversations from the last few days. We talked about the risks. I went over the dose. Double effect, I reassured myself. Even so, as bedside nurses have told me, it's easier to talk about philosophy when you're not holding the syringe.

I thought about how I would explain Tom's death to Julie. I wondered if she would be angry, upset, relieved? With the help of my outpatient colleagues, they had spent years preparing for his death. His financial affairs were in order, and he had done legacy work with his kids. More than nearly anyone I had cared for, they were ready. Were we? Was I?

(SINGING) Mortals join the happy chorus which the morning stars began.

He breathed in. Not a grand gasp, a slow, soft inhalation. Tom's hand flexed ever so slightly around Julie's. In my head, I thumped a pew.

[MUSIC PLAYING]

SPEAKER 2: Welcome to "JCO's Cancer Stories-- The Art of Oncology," brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

SPEAKER 3: The guest on this podcast episode has no disclosures to declare.

[MUSIC PLAYING]

LIDIA SCHAPIRA: Welcome to "Cancer Stories-- The Art of Oncology" podcast series. I'm your host Lidia Schapira. And with me today is Dr. Richard Leiter, physician and member of the Psychosocial Oncology and Palliative Care team at Dana-Farber Cancer Institute in Boston and the Brigham and Women's Hospital. Welcome to our podcast.

RICHARD LEITER: Thank you so much for having me.

LIDIA SCHAPIRA: It's a real pleasure. You submitted a beautiful narrative piece called "Ode to Joy." And I'd like to start today, Richard, by just focusing first on the case that you present to us. Let me tell you how I understand Tom's history, and then you can correct me if this is not the way that you'd like him to be understood. And remember, Tom is a man in his 50s who's lived with metastatic cancer to bones for years.

In your narrative, you're very careful and document the fact that you've worked with many members of your palliative medicine team for a long time, that there had been many efforts to control his pain, his suffering, and he had to be hospitalized for pain management. He was already receiving home hospice care. There was a bed in the living room in the center of the family home. And he had a very supportive family and a wife that we'll call Julie at bedside. Is that the proper framing for the story?

RICHARD LEITER: Exactly. Yep. Yeah. I think what I would add is that the goal was really to control his pain and get him back home.

LIDIA SCHAPIRA: So now you're there as the fresh attending in palliative medicine, and you're called in, and it becomes quite clear to you after a few days of changing his medications that the pain is refractory. And that it-- you note here that he screams when he is moved, that the level of pain reaches what you have called agony. So tell us a little bit more about how a palliative medicine consultant or physician approaches this kind of situation in hospital today.

RICHARD LEITER: Yeah, no. Great. Thanks so much. So we were, I would say, lucky enough to have him on our intensive palliative care unit, where we're caring for patients with difficult and sometimes refractory symptoms at any stage of the disease. So not only for end of life. But we do see a number of cases like his every year, every few months, where someone is getting closer to the end of life.

The goal is to really focus on intensive symptom management. And their symptoms are challenging to control. So I think the first step, always, is a good history, right? Where is this pain coming from? What treatments have they tried already? What's worked? What hasn't? We're going to titrate medications, but select medications based on that and titrate them.

I think someone who has been involved with my outpatient colleagues and has been receiving hospice services at home has often gone through many treatment modalities. So it's really taking what they've been on before and starting to add to it. So for Tom, I had inherited him from one of my colleagues, who had admitted him a couple of days earlier. And at that point, he was already on a hydromorphone infusion and ketamine, as I talk about in the piece.

Ketamine had been started, hopefully, as a bridge to get him back home. And he had been on methadone, which is one of our most potent agents for, not only nociceptive pain, so our basic kind of bony pain or visceral organ pain, but also if there's pain with a neuropathic component. Methadone is an opioid that can be particularly effective there. So I think it's saying, OK, well, have we hit all of our receptors in managing their pain?

Are we managing the anxiety on top of that? Are we doing everything we can? Are there procedures that we could do to help with their pain? Sometimes we're talking about intrathecal pumps for instance. And obviously, that's a more involved discussion. How much time does someone have left? Are the goals really to put them through a procedure in order to get their pain under control? But we frequently work with our interventional pain colleagues to tease out whether a procedure would be helpful for a particular patient.

So those are the thoughts that always go through my mind when I'm approaching someone with severe cancer-related pain.

LIDIA SCHAPIRA: So this is a very thoughtful approach. And I think one of the messages is that it seems palliative medicine and pain management are integrated into the care of patients with advanced cancer, which is a very important message for our listeners and our readers. And here you are, you have all of this, you have good communication, it seems, with your team members, with the patient's family, and there's nothing more that you can think of doing.

And you're now starting to think about interventions that we normally don't think of, except as a last resort. Bring this to the bedside. Tell us a little bit about the recommendation for palliative sedation and when that's indicated in care.

RICHARD LEITER: Yeah. So palliative sedation, as I write in the piece, it's a measure of last resort. And certainly, in our hospital's protocol, it explicitly states it's when all other options have been tried. As we start to integrate more options, it's always a conversation we're having among our team-- is when is palliative sedation truly indicated. How many boxes do we need to check before going down the palliative sedation route?

And I think-- so we started to think about-- we had him on ketamine. We tried to wean him off, it didn't go well. We restarted ketamine. We started dexmedetomidine, which can be useful. Precedex, the brand name, they oftentimes use it in the ICU for sedation, but we find that it can be helpful in cases of refractory pain as well. And my practice has been-- and though I haven't gotten to palliative sedation until this case-- when I'm thinking about Precedex, I'm also starting conversations with the patient or their family, and certainly our team, about palliative sedation to say if this doesn't work, this is where we're headed.

LIDIA SCHAPIRA: And why is this situation so difficult, so personally anxiety-provoking for you? You do use words that convey that you are feeling nervous, or perhaps even anxious. Tell us why.

RICHARD LEITER: I think it's-- relieving our patient's suffering, relieving their families suffering is certainly the core of much of medicine and very much the core of what we do in palliative care. And I think to have someone in just such a terrible situation-- putting aside the pain, right? This is a man who's dying of his cancer, has a relatively young family. That alone is an awful situation. And my job is to make that situation a little bit less bad, is to ease the suffering.

LIDIA SCHAPIRA: And there's something about this particular procedure, however, that adds a level of intensity and nervousness for you, and that is that perhaps-- you can describe this better than I-- but the fact that in some cases, this could have the unintended effect of actually causing respiratory depression or even hastening death and something that you have explained in your piece, if I understood you correctly, as the double effect. Did I get that right?

RICHARD LEITER: Yeah, that's right. So the worry or one of the considerations with palliative sedation is that it could hasten someone's death. Oftentimes, the doses of the medications that we're using, if we're titrating them slowly, there are studies that show that it doesn't necessarily. I do think, though, when we tie it into withholding artificial nutrition and hydration, in that case, had the person been awake enough to eat and drink before, we do know that it would probably hasten their death, right, from that part of it, but not necessarily the sedation aspect.

So double effect is basically saying this is ethically OK-- and there are a number of criteria. But if we are intending the good effect and not the bad effect and that it's proportional to the gravity of the situation so that not every patient who comes in with bad pain undergoes palliative sedation.

LIDIA SCHAPIRA: My favorite line, Richard, in the piece-- and one that I now have read probably dozens of times-- is this-- "the double effect, I reassured myself. Even so, as bedside nurses have told me, it's easier to talk about philosophy when you're not holding the syringe." And that just gives me goosebumps thinking about it. What did you feel when you were holding the syringe?

RICHARD LEITER: Exactly as I wrote about. There's all of the cognitive processes going on. And I ran it by another attending, I ran it by the nursing director, I ran-- everyone was on the same page, that this was medically indicated in this situation. And yet, when I'm standing there in the room-- patient, his wife, my fellow, and the nurse-- and I'm the one holding the syringe, watching the medication go in, it felt completely different to me.

And there's a power that comes with it. In one sense, I felt like I was there for my patient. Here I am, standing here doing this to ease his suffering. And then the other, the unintended consequences of the sedation are real, and that feels different when you're the one physically doing it.

LIDIA SCHAPIRA: I think one of the incredible gifts you've given us as readers is to share this with us and really adds a different dimension to the discussion of the complexity of what it is to be present, not just as a witness, in this case, but as somebody, as you say, with a power to really control so many things in the situation. And I thank you for sharing that with us. And question to you is, did writing about it in any way help you process this emotional, very powerful experience?

RICHARD LEITER: Absolutely. I write to process. I write when I feel like I have something to say. And oftentimes, I write when a particular moment struck me. And I think that that moment, sitting there, pushing the medication, waiting for that breath while the music was playing was so poignant for me that I walked out of the room and I remember thinking to myself that night as I was decompressing on my walk home from work, I think I need to write about this.

LIDIA SCHAPIRA: So thank you for writing about it, and then, of course, for submitting for review and to share it with people. Let me bring the music in. Music is such an important part of our sensory experience. So as you were holding the syringe, Julie, Tom's wife, puts the phone on the pillow and she plays the piano version of Ode to Joy from Beethoven's Ninth Symphony, which I want to play for our listeners now.

[MUSIC PLAYING]

So Ode to Joy meant something, clearly, to Tom and Julie. And you said that you watched-- perhaps you were watching for his reactions. But tell me a little bit about what it meant to you. You sprinkled your essay with the lines for the choral for Ode to Joy, which has a religious significance as well. So tell us a little bit about that.

RICHARD LEITER: Yeah. So I grew up in Toronto. I went to an all-boys school there that had a traditionally Anglican background, though I'm not-- I'm Jewish. We would sing hymns. And over the course of my time there, the hymns became less denominational and more multicultural and inclusive. And it was a moment-- it was a nice moment where everyone got into it. It's 600 boys singing, and so I still remember the words to Ode to Joy vividly.

Anytime I hear it, I can replay the words in my head. And I found myself, in those moments in the room, really thinking about it. And the words were still-- as I was processing and watching Tom and Julie and making sure I was pushing the medication at the right speed, there was this soundtrack. It's a strange moment too, because they're good memories for me, and yet I'm in this incredibly solemn, intimate moment in my patient's room.

LIDIA SCHAPIRA: And so as we're getting to the end of the piece and there's all of this tension that you've built up in the writing and the narrative-- and here you are, you're waiting and you hear the music and so on-- and then you finally let the tension out and he breathes. It's not a huge breath, but it's a soft, slow inhalation. And you see that the hand is flexed slightly around his wife, so he's still breathing.

And you finish with this line that you say, "In my head, I thumped a pew." And I have to ask you about that. What does that mean to you?

RICHARD LEITER: Yeah. So in that moment, it was relief, is what it was. Just the sense of, OK, this went-- it's my first time doing this, and this went OK. He appears more comfortable. He is still breathing. This is OK. And it just brought me back when we would thump the pews as we were singing the hymns. Our principal did not like it, but--

[LAUGHTER]

But I think it was just that it was relief. I hesitate to say it was joy because I don't think there's joy in a situation like that, in the room. But there was a sense of satisfaction maybe, or professional satisfaction, the, OK, this is what we can do. And as bad as the situation is, there was something that we could do to make him somewhat more comfortable.

LIDIA SCHAPIRA: Well, I certainly learned a lot. I wonder if now that some time has passed since this event, if you have any additional reflections on how this story has impacted your professional delivery of care, or perhaps the way you teach others, and if there are any parting comments that you'd like to leave us with. So I haven't had another case where I've needed to do palliative sedation, though we've thought about it in a couple of cases.

I do think it's helped me, when I talk about palliative sedation with our trainees, to add the emotional valence. I think I was pretty good at talking about the importance of making sure everyone's on the same page and talking to the patient and the family and nursing staff. But to really talk about the significance of that moment for us as clinicians and how it does feel different-- at least it did for me-- and I think drawing on my personal experience is helpful in teaching it to the fellows that it's OK to feel like that when you're doing this.

LIDIA SCHAPIRA: There are moments in medicine-- certainly in what you do-- that are really difficult. And this, probably, I would imagine, ranks as one of the top things. And it should never be easy. It will never be easy. The day that you think it's easy, you need to find something else, right?

RICHARD LEITER: I think that's right. I think that's right.

LIDIA SCHAPIRA: Well, thank you so much, Richard. You made me laugh, you made me cry reading this, and I thank you very much. My last question is, have you had a chance to talk with Tom's widow Julie about what that moment felt like to her?

RICHARD LEITER: I have not, although I hope to in the near future.

LIDIA SCHAPIRA: And that will be your next piece for us.

[CHUCKLES]

All right. Well, thank you very much and until the next time. Hope you all enjoy reading Ode to Joy.

RICHARD LEITER: Thank you so much.

SPEAKER 1: Until next time, thank you for listening to this "JCO's Cancer Stories-- The Art of Oncology" podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. "JCO's Cancer Stories-- The Art of Oncology" podcast is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org.

[MUSIC PLAYING]

A mother mourning the loss of her daughter discovers that she has lost something else important to her.

TRANSCRIPT

SPEAKER 1: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

SPEAKER 2: Welcome to JCO's Cancer Stories, The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

ELIZABETH CONROW: Access Denied, by Elizabeth Conrow. I lost my daughter, Amanda, in 2015. She was diagnosed with a brain tumor at age three and was in treatment for 2 and 1/2 years. Less than two weeks after she died, friends and family were getting on with their lives, but I was still in shock. I couldn't believe that Amanda was really gone.

Early in the day, I looked at my kitchen table and tried to imagine her eating a bowl of rice, an unusual breakfast for a five-year-old. But that was Amanda. My eyes filled with tears as they rested on the empty chair. She was really gone.

In that moment, standing in the kitchen, I struggled to remember every detail of who she was. It felt like the memory of her was slipping away. My heart beat quickened, and my mind raced with compulsive nagging thoughts. How tall was she the last time we were in the outpatient clinic? How much did she weigh?

I realized I would never be able to put her on a scale again or mark her height on the cupboard door. I fear that this information would be lost forever, just like Amanda. I moved to my computer and started to log on to our hospital's online patient portal to see if I could find answers to my questions.

How many times had I logged into this system looking for Amanda's test results or to message one of her doctors? How many times did it serve to confirm appointment times or remind me of medicine doses? I clicked the Sign In button, and my heart stopped. I couldn't get in.

Instead of viewing her chart, I saw an alarming red stop sign and a message saying "access denied." I stared at the screen in disbelief. Just two weeks after losing my daughter, I faced yet another heartbreaking and unexpected loss. I no longer had access to Amanda's medical records. I no longer had a connection to her medical team and the hospital family I had grown to love and care for.

Everything Amanda had been through for the last 2 and 1/2 years was gone. It was as if she never existed. She had vanished. I was caught off guard, deeply saddened, and utterly unprepared to have this connection to the hospital and this connection to Amanda ripped away.

I was confused and embarrassed by my emotions. I certainly didn't need this access. But I was devastated that it had been taken away. I reached out to my daughter's oncologist to ask how and why the patient portal had been turned off. I let him know that it was really important to me to be able to view Amanda's records, at least for a time.

It had never occurred to him that a parent might want to see this information again. He explained that it was a system designed safety measure that automatically turned off access to an account once a patient had died. I was the first parent to reach out to him with this question.

Amanda's oncologist immediately contacted the online records office to reactivate her chart so I could search out answers to some of my questions. It brought me so much comfort to be able to go back in and revisit her medical journey. As I thanked her doctor, I shared with him how important it was to protect families from this type of trauma. I didn't want another family to experience this pain.

He listened and helped put a manual reactivation system in place. Going forward when a child died, the online records office would manually reactivate each pediatric account individually. It wasn't a perfect solution, but it was a step in the right direction.

It has been six years since Amanda's passing. I am now the bereavement coordinator at the same hospital where she received care. When I started in this role, I was surprised to learn of several families who, like me, had been denied access to their child's medical record. Hadn't the hospital resolved this issue years ago?

I was frustrated that our institution hadn't found a better solution in the six years that passed. Last spring, as I followed up with bereaved families from our hospital, I had a conversation with a mother, Diane, that was hauntingly familiar and heartbreaking. Diane and I spoke on the phone shortly after the loss of her son, Evan. As we wrapped up our call, almost as an afterthought, she sheepishly asked about Evan's medical records being deactivated.

I was immediately brought back to my kitchen table and the pain I felt when I experienced this secondary loss just two weeks after losing Amanda. I knew why Diane felt silly asking about this. And I deeply understood her need to log in.

Diana explained that she was creating a record of everything Evan had been through, every transfusion, every chemo treatment, every inpatient and outpatient visit. And she could no longer complete that task. She shared her experience with me.

I know for me, it was really difficult to wake up that very next morning, literally only about 12 hours since he died and not be able to look at it. Even though I know there had been no additional tests run since the last time I had checked, it was my morning routine to look at it. I would check it each morning, even before I got up.

It had been that way for months while we were inpatient. First, looking at his ANC and counts, and then in the final month and a half, checking his bilirubin and liver numbers. There was always that hope that things were going to improve. This would be the day.

So that first and subsequent time was just a blunt reminder that he was gone and there would be no more checking. I wanted to go back and look at his results, too. Oddly, I thought it would make me feel closer to him and closer to the routine I had while he was alive.

Diane wanted to feel closer to her son. I wanted to feel closer to my daughter. Accessing a child's online medical portal is one way a parent begins to come to terms with this impossible loss. Snaman, et al, 2016, suggest that parents who are grieving significantly benefit from the creation and continuation of bonds with a child who has died. Revisiting a child's journey through the lens of the medical portal helps strengthen that bond.

As I looked through Amanda's chart and remembered various times we visited the hospital, it helped me picture her more clearly. And it helped me feel a connection to her that I was deeply longing for. Looking through a child's medical record, while painful, can be part of healing and connection. In addition to creating bonds with a child who has died, the medical portal helps parents stay connected to the hospital and the medical team that cared for their child.

According to additional research by Snaman, et al, 2016, bereaved parent's benefit from the ongoing support of a hospital throughout a time of grief. When a child dies, the secondary loss of the medical community can leave families feeling abandoned by those they have come to trust and depend on. Anyone who had taken care of Amanda felt like family to me.

Sending messages to Amanda's medical team after she died provided a feeling of familiarity when everything else around me was spiraling out of control. A continuing connection with the medical team through the online portal can positively impact grief outcomes for bereaved parents. Accessing a child's medical record provides a grieving family with an easy way to communicate with, and ask lingering questions of the medical team. Access to medical records should not end when a child dies.

The 21st Century Cures act acknowledges the need to provide patients with open notes and immediate access to medical information. As we implement real-time access for living patients, continuing access after a loss should also be considered essential.

Dr. Alan Wolfelt, from the Center for Loss, discusses the need to say hello to one's grief and welcome it before saying goodbye to the person who died. In those early months, saying hello to grief meant reading through Amanda's medical records, communicating with her medical team, and uncovering every connection I had to her while she was alive. In some small way, logging into Amanda's medical portal and discovering that she was 42 inches tall and weighed 41.2 pounds brought me immeasurable comfort. As parents grieve the loss of a child, comfort and connection should be readily available without having access denied.

SPEAKER 3: The guest on this podcast episode has no disclosures to declare.

SPEAKER 4: Welcome to Cancer Stories, The Art of Oncology podcast series. With me today is Elizabeth Conrow, bereavement coordinator at the University of Rochester Medical Center and the author of Access Denied. Welcome to the program, Liz.

ELIZABETH CONROW: Thank you so much for having me here. It's an honor to be here.

SPEAKER 4: It is our pleasure. And first of all, let me start by saying I was very moved by the piece. And I'm so sorry that you lived through this experience. And really interested in knowing how you transformed your personal grief into now, your profession.

ELIZABETH CONROW: Sure. Well, it's definitely been a process. Obviously, as a family, we never thought we would be down this road. I never thought I would have a child who had cancer. I never thought that I would have to go through the grief of losing a child and then comforting my own family, and my husband, and those around us through that experience.

And I can tell you that for the first couple of years, I really didn't feel equipped to do anything. I felt like I lost my confidence in anything that I had an ability to do prior to this. Simple things like making a meal for someone who was sick became way too overwhelming to even consider doing. So it was definitely a process of years.

But when the opportunity came up to work at Golisano Children's Hospital, the same place where Amanda had been cared for, the timing was right. And I knew that it was a great step to take and a way to honor Amanda's life, and really in some way, offer just a little bit of support and comfort to bereaved families, because I understood a little bit of what maybe they were going through. So it just seemed like a really good fit and a really good match for my experience at that point and a way to help and honor Amanda.

SPEAKER 4: Let's start by talking a little bit about Amanda. Tell us a little bit about her and her story.

ELIZABETH CONROW: Sure. Amanda is one of five children. So she was the fourth of the five. Very silly, loved to wrestle with daddy, had the biggest blue eyes that anyone had ever seen. She was just a delight and a joy.

And when she was 3 and 1/2, she was diagnosed with a brain tumor. And we were in the hospital for a number of days. She had surgery and a full resection. And we were told that if after a resection and radiation it never came back, that we would be good. But that if it came back, it would likely be terminal.

So we knew at the outset that this was-- we're not dealing with a cold or a headache. We're dealing with something pretty serious. So she went through the surgery beautifully. She went through all of her radiation treatments.

We did a clinical trial of chemotherapy. And six months from when she was diagnosed, we really felt like we did well. She did amazing. And we were ready to walk away from everything and just celebrate really, kind of getting through this.

And her very first follow-up scan two weeks after she was done with treatment-- her doctor, Dr. Koronas, called us and let us know the very devastating news that the tumor had returned, and it was all in her brain and down her spine and too many places to count. So six months from diagnosis, we knew that this was not going to end well. And we kind of had to struggle to prepare for that, as well as to recognize that in that moment, she was still Amanda. And she was still doing really well.

But we knew that time would be limited. And so we had actually a very good year and a half with her, as much as you can say that. She went through additional radiation treatments. And we continued to try other chemotherapies to do what we could. But ultimately, in February of 2015, surrounded by her family in our home she passed away.

And we then had a whole new struggle with grief and really, coming to terms with a new life and a devastating loss. But she was a joy. And she was a joy throughout it. So it was not all terrible.

SPEAKER 4: She sounds like an extraordinarily little girl. And in your essay, you start by telling us that just after she died, I think a few days or weeks, you're thinking about her, and you want to access her medical record through the portal that you had gotten used to using all the time. And then as you're logging in, you get the signal that says "access denied." And that triggered a tremendous wave of grief for you or something. Tell us a little bit about that and what you did with that.

ELIZABETH CONROW: Sure. I think I didn't realize at the time that I was really just trying to hang on to who she was, that I was trying to connect with her in some way. I mean, it was just two weeks after she had died. And I just-- I wanted access to see, what did she weigh? Goodness, if I could recreate her in the form of a stuffed animal, how long would she be? How much would she weigh?

And when I went to log in, it was a horribly devastating loss. It really felt like all of the sudden, I knew in my mind she was gone, but logging into this wealth of information that contained all of her blood counts and numbers and information that we had access so often, to all of a sudden have that gone. It was just a punch in the gut reminder that she truly was gone and that her records had disappeared.

And she just wasn't here. And I wasn't prepared for that. I really thought that I'd be able to go in and find the things I wanted to find and have peace about that. It was shocking to me.

And I remember feeling so embarrassed like, how can I call her doctor and say, I lost this access and I really need it? When she's not here, there's no reason. I don't need it. He's going to think I'm crazy.

But it was important enough to me that I reached out to him. And I said, you've got to help me. How can I still access this?

SPEAKER 4: So what happened next?

ELIZABETH CONROW: So he-- actually, I was pretty surprised. I was the first parent he said, that had ever reached out to him with this issue. And I thought, how is that possible? How is that possible?

And I'm guessing other parents had experienced it, but didn't know what to do, didn't know where to turn. And he was very compassionate. And he reached out to our online medical team, our portal team, and tried to figure out a way to reactivate the account for me. And got that done very quickly.

And I said, well, it's not enough that it's been reactivated for me. No other parent can go through this. We have to come up with a plan. And so he really did work very hard with our team here to come up with something that would hopefully fix the problem. And it did.

I know many families then, had their access turned back on manually, through a manual process that they put in place here. But I know that in the last six years, there have been several families who went to log in and had this experience. And unless you've been there and unless you've been the parent on the end of losing a child and then going in and having more taken away that you didn't expect, you don't understand the pain of that.

And so I think the driving force behind me really wanting to write this article was to say, I know that this isn't just my institution. I know this is happening across hospitals. I know that when a child dies, this access is turned off. And that really hurts families. And if there's a way to bring attention to that and say, hey, we can do better, we need to.

SPEAKER 4: Now that you have this perspective, I know that you have actually developed some training for oncology fellows and staff to train them a bit to talk with bereaved parents. What are some of the lessons that you want people to learn?

ELIZABETH CONROW: That's a great question. I'm working with another doctor here. It's an advanced communication training where we're helping young doctors share bad news for the first time. And it's amazing to me how afraid people are to approach the bereaved. And I guess, having been through it, I see now how poorly we really do bereavement and how afraid we are to kind of approach someone who's lost a child and just wrap our arms around them and say, I'm so sorry. I'm here with you.

Everybody wants to fix it. And there's no fix. And people don't want to approach a bereaved parent and bring up their child, because they don't want to make them sad. And what many people realize is that our children are always on our mind. You're not reminding us of anything we're not already thinking about.

I was pretty surprised after losing Amanda that someone could be on my mind all the time-- all the time when they're not here anymore. You know, you think about people here and there, time to time, people in your life. But once she was gone, she was right at the front of my mind and still is, every moment of every day.

And so if you see a bereaved person, it's OK to mention their child's name. I actually-- I go to the dentist. And the woman who cleans my teeth, every single time I go, will mention Amanda. And I know it's intentional. And I know it's because she wants me to know that she cares. And so those kinds of simple acts that people do as a way of recognizing and honoring the child whose passed means so much to a bereaved parent.

SPEAKER 4: Just listening to you and the emotion in your voice, I imagine it must have been difficult in a way to go back to the same place where Amanda was treated and now, work with the staff and the clinicians who treated her. Tell us a little bit about how you've managed those relationships?

ELIZABETH CONROW: One of the things I've learned, and that's partly through the role I have now in supporting other bereaved parents is that everyone grieves differently. And I know there are some parents who, the first time they come back to the hospital, it's really, really hard for them. And it's almost like a PTSD moment.

For me, I appreciated and cared about all of the medical staff so much that coming back here to me, was a need. I needed to get back here and find a way to connect with these doctors and nurses and the people who cared for Amanda so beautifully while she was here. In those first months of grief, I showed up at the hospital-- I remember there was one day I showed up, and I felt so lost. But I just needed to see those nurses and give them a hug.

And I felt awkward and out of place, because suddenly, I'm here and she's not with me. But I just needed to be in a place where she had been and a place that meant so much to us. So coming back here for me, certainly had its hard moments. And there have been challenges with it.

But it's been a place of comfort. And being able to talk about Amanda with other parents has really been a gift for me, because it's not an opportunity you have all the time, especially six years later to talk about the child who died. So it's been a gift.

SPEAKER 4: What is it like for you to be with other parents now who are going through what you experienced? How does your experience of loss influence your role as a counselor for a newly bereaved parents?

ELIZABETH CONROW: I do a lot of listening. I do a lot of listening. And there are some parents who I'll call and follow up with and check in on. And they're good. And they don't need anything.

And to be honest, I think when we first lost Amanda, if someone called me and I had never met them before, I might say I'm good. I don't really need any support right now. I've got my family.

But there are some parents who I will call, and they will talk to me for 45 minutes. And they will cry. And they will say, you're the first person I've been able to talk to about this, because you understand and you've been through it. And so I'm able just to listen.

And when they say things that they think are crazy, I wandered into my son's room and I slept in his bed last night, I say, I understand that. I once found Amanda's socks in a travel bag. And when I found them, I pulled them out and I slept with her socks. So there are things that people think are crazy that I'm able to help them normalize some of those feelings and understand that it's OK.

SPEAKER 4: I don't think it's crazy at all. You speak with such knowledge and also such empathy. I wonder if you can help us also understand how you see the clinicians now-- the doctors and nurses who are actually are caring for these patients-- how you see them react to the death of a patient and how they maintain their relationships with what the parents once the kids are gone?

ELIZABETH CONROW: It's been very interesting, I guess you could say to be on the other side of this, right? I was on the parents side before, where I was able to receive kind of the love and comfort and support of those who cared for Amanda. And I was able to see them showing up at the funeral and the ways that they would reach out and send notes and cards.

But now, being on this side working with many of those same people, I've been really struck, even during our weekly meetings when they talk about different cases and different families and the losses that they've had, how significantly it does impact them, and how much those families and those children really do mean to them. And you know, I've often sat there now wondering, well, what did they say about my family? What did they say about us?

And not a conversation I can go back to and sit in on. But I'm just struck by how much they really do care and how much it extends beyond this just being a job for most of-- all of them.

SPEAKER 4: Yeah, in your role now, in your professional role, what kind of changes have you implemented in the way clinicians and parents communicate, or the way the system communicates with parents?

ELIZABETH CONROW: At our hospital where I work, we have probably around 80 or 90 losses a year. And I came into this and said, I can support these families. And I can follow up with 80 or 90 families in a reasonable manner. But really, we need more parents doing this. We need to expand kind of what we're doing.

So I've been trying to work toward implementing a mentoring program of sorts, where bereaved parents who are a few years out in their grief can come alongside newly bereaved parents and really support them, one on one for a year or a year and a half to help them get through that time, so that it isn't just me. And as great as I am, I really know that we can do much, much better by parents if we expand kind of the support network that we have.

So I've been trying to grow some of our bereaved parent base. And those who can give input on some of the things we're doing-- because I know bereaved parents have so much wisdom and so much they can share from their own experiences.

SPEAKER 4: You sound like a force. I wonder, have you connected with other hospitals, other teams? Or is your-- are you concentrated on your hospital and your community?

ELIZABETH CONROW: The greatest support to me, actually has been St. Jude. They have such a fantastic program. Their bereavement, their parent support is really outstanding. Actually, just this week, I was able to sit in on one of their parent mentor trainings to kind of learn, well, how do you train your people, and what do you do? And so that was fantastic. So I'm really grateful-- grateful for their support. So they've been really wonderful.

SPEAKER 4: I imagine Amanda's passing really affected your entire family and the other kids. Can you tell us a little bit about how all the other kids dealt with their grief?

ELIZABETH CONROW: Sure. I know at the time when Amanda was diagnosed, my oldest was 9, and my youngest was 9 months. So everybody was pretty little. And they went through that at a really young age.

And then when she passed, my oldest was 11 and my youngest was 3. So they were still little. And they had been through what I consider to be significant trauma in those early years. And when things first happened, I mean, I had a therapist describe it to me as a children's mobile that hangs over their bed you know, that once it becomes imbalanced, it just tips on its side. And that's the way things felt at home for quite a while. You know, just nothing felt right and things felt out of order.

But kids are so resilient and so forward looking. And my kids really did beautifully through it. And I had someone tell me, well, kids are going to revisit grief. And they're going to come back to it from time to time. And it'll surprise you.

And I will say, that's so true. You know, I would think everything was going along OK and everyone was coping well. And then, my daughter Jessica, who was closest in age to Amanda, would come down at 10 o'clock at night in tears because she was thinking about her sister. And that would catch me a little bit off guard.

And my oldest just went away to college. And she's now 18. And she's had some conversations with me lately just about everything they went through and really revisiting some of her feelings about it all. And so they don't really get over it. But helping them to kind of process it and work through it and really, just talk about her. We talk about her constantly.

She's a part of everything we do. We still make her a birthday cake. So we just keep her memory alive and celebrate her life together. But grief for kids is certainly different, and it doesn't end. But they are definitely forward looking and really can handle more than I think sometimes we give them credit for.

SPEAKER 4: And your husband and you I hear have also been involved in some activities to talk about this publicly or teach others. What was that like for you as parents?

ELIZABETH CONROW: There are a few things that we've really wanted to help move forward in terms of childhood cancer awareness and things that people can do to really help bereaved parents. And I think there's just so much that people don't know or understand. Many people don't realize how underfunded childhood cancer is. So it just means a lot to us to be able to kind of get that message out now.

SPEAKER 4: I imagine there's so much work to do. And as we've had this great opportunity to chat about Amanda to remember her, to think about your experience and the amazing work you seem to be doing-- are there any final comments that you want to share with our listeners?

ELIZABETH CONROW: It's an honor for me to really share this experience. And that bereaved parents need support, and they need to know that people care and remember, even as time goes on. So just take good care of those who know who are grieving. And love one another.

SPEAKER 4: Thank you so much. This is Liz Conrow, author of Access Denied, published in Journal of Clinical Oncology. Thank you very much. Until next time.

SPEAKER 1: Until next time, thank you for listening to this JCO's Cancer Stories, The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode.

JCO's Cancer Stories, The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org.

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