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Cancer.Net Podcast

Cancer.Net Podcast

American Society of Clinical Oncology (ASCO)

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Frequency: 1 episode/31d. Total Eps: 175

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Cancer.Net Podcast features trusted, timely, and compassionate information for people with cancer, survivors, their families, and loved ones. Expert tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care
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What People With Cancer Should Know About Cannabis and Cannabinoids

mercredi 13 mars 2024Duration 28:33

 [music]

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals.

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. Guests’ statements on this 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. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

Greg Guthrie: Hi everyone, I'm Greg Guthrie, a member of ASCO's patient education content team, and I'll be your host for today's podcast. ASCO is the American Society of Clinical Oncology, and we're the world's leading professional organization for physicians and oncology professionals caring for people with cancer. Today we're going to be talking about what patients should know about cannabis, cannabinoids, and cancer. ASCO recently published a clinical practice guideline on cannabis and cannabinoids for adults with cancer.

I'm happy to have 2 of the co-chairs from the committee that developed this guideline as our guests today. Dr. Ilana Braun is an associate professor at Harvard Medical School. Thanks for joining us, Dr. Braun.

Dr. Ilana Braun: Thanks so much for having me.

Greg Guthrie: It's a pleasure to have you here today. And Dr. Eric Roeland is an associate professor of medicine at Oregon Health and Science University. Welcome Dr. Roeland.

Dr. Eric Roeland: Thanks, Greg.

Greg Guthrie

Great. So before we begin, I want to note that neither Dr. Braun nor Dr. Roeland have any relationships to disclose related to this podcast, but you can find their full disclosures in this podcast's show notes.

So let's start with the fundamental question about this discussion, and that is what is a clinical practice guideline and how does it help guide cancer care? Dr. Roeland, can you start with this?

Dr. Eric Roeland: Of course, yeah. A clinical practice guideline describes the best practices or what clinicians call the “standard of care” with regard to a specific topic. So this is kind of the blueprint that clinicians use to guide their practice when taking care of people with cancer. And the American Society of Clinical Oncology clinical practice guideline on the use of cannabis and/or cannabinoids summarizes the best available data collected specifically from humans in clinical trials, and we combined that with a multi-disciplinary panel of expert opinion.

Greg Guthrie: Yeah, I think it's really important to always remember that best evidence comes from research in humans as well as from clinical expertise. So it's the best recommendations that we can have to support cancer care.

 

Dr. Eric Roeland: Greg, I also think it's very important to understand that there are different places that we gain knowledge in research. One is specifically when we are trying to figure out how a drug works, and we will test that in what we call “preclinical models,” which is usually within animals. And then, once we’ve determined safety and efficacy, then we start taking that information and approach studies in humans. And so when our listeners are learning about new data in the use of cannabis or cannabinoids, I encourage everyone to always stop and ask, is this data coming from the animals or is this from humans?

Greg Guthrie: That's such an important point. And I think it's so essential to always look for that piece of evidence whenever you're reading about scientific advances. Alright, so let's take a moment to talk about what it means when we say cannabis and cannabinoids. Dr. Braun?

Dr. Ilana Braun: Cannabis, which is better known as marijuana, is a plant that humans have turned to for thousands of years as a medicine, in manufacturing—for instance, in the making of rope­—and for enjoyment.

It's often mistakenly viewed as having one main ingredient, tetrahydrocannabinol, or THC, but it actually has more than 300 ingredients that act in the body. Some of those ingredients are referred to as cannabinoids. There are 2 cannabinoids of greatest interest, THC, which I just mentioned, and CBD, cannabidiol. THC is responsible for the high feeling some people experience with cannabis. CBD is not.

Currently in the U.S., some cannabis products containing these cannabinoids can be sourced at the pharmacy, others at cannabis dispensaries, and some through more informal means.

Greg Guthrie: That's great. Thank you for that definition here as we continue this discussion. So what do people with cancer typically think cannabis and cannabinoids will do to help them? Dr. Roeland?

Dr. Eric Roeland: Well, it's a great question, Greg, because in clinic, when patients and their loved ones express interest in either starting cannabis or cannabinoids or are currently using them, I always want to explore what their goal of use is. And interestingly, the goals of use are far-reaching. And I have heard everything from, to help with everything, to cure my cancer. And so it's incredibly important to understand why people are reaching towards these products, to understand what their goals are. If they're focused on using this to treat the underlying cancer, or instead of standard cancer therapies, we have grave concerns about this approach. And it may lead to worse outcomes of your cancer.

However, if cannabis or cannabinoids are being used to help with controlling some symptoms during their cancer treatment, it may be helpful. And especially in one particular case where people have really bad nausea and vomiting that persists despite our best medicines to prevent it.

Greg Guthrie: Thank you for that, Dr. Roeland. Dr. Braun, did you have anything to add?

Dr. Ilana Braun: Maybe I will just point out that decisions on what to target with cannabis are often made through trial and error or in consultation with dispensaries, but not as much as I would prefer in consultation with clinical teams.

Dr. Eric Roeland: So I would also add that it's incredibly important to bring these topics up with your clinical team because although cannabis and cannabinoids are considered safe by many because they're quote “natural,” it's important to recognize that they actually can interact with many of the other medications that you're already taking.

For example, patients with cancer might be experiencing really bad pain or anxiety and taking things like opioids or benzodiazepines. And when you combine that with cannabis, it can prolong some of the effects of sedation or confusion. I'd also like to point out that this is not a time where people want to try cannabis for the first time, when they are weak and/or experiencing poor appetite and higher risk of falls. This is not the best time to be trying cannabis or cannabinoids without clear guidance from the clinical care team.

Greg Guthrie: Do you find in writing this guideline and through your clinical experience that most people who are asking about cannabis and cannabinoids, that they already have been trying to use it or are considering it? Because there's a difference there, right? What goal are they looking for, and do they already have a predetermined assumption about what's going to happen with these?

Dr. Eric Roeland: You know, Greg, as clinicians, we talk about a lot of hard stuff. We talk about challenges in terms of health care, access to care, cultural differences, financial toxicity. And it's so fascinating to me that we don't talk about something as simple as whether or not patients are using cannabis. And the reality is that when patients actually bring it up in clinic, I would say that most times they're already using it and are just simply asking for some advice on how to use it safely and effectively. So once I decided to lean in on this topic and create a space for patients and their loved ones to bring it up in clinic, I have found that it's brought up during most clinical encounters.

Greg Guthrie: Fascinating. And so that's likely why the first recommendation of this guideline addresses the importance of communication between doctors and patients on this topic, correct?

Dr. Eric Roeland: Yes, absolutely. I think that doctors are reticent to talk about this topic because of concerns around legal issues, which can be highly varied across the country. And Dr. Braun can speak to this more.

Dr. Ilana Braun: Yeah, so in order to offer the very best care possible, I think that medical teams should know about all the medicines and supplements a person is taking. And this includes cannabis and cannabinoid products. Why? Well, because, as Dr. Roeland mentioned, cannabis and cannabinoids can sometimes decrease the effectiveness of some therapies that a person is on, likely including some cancer treatments, and they can also worsen side effects of other therapies. And then at the same time, cannabis and cannabinoids can be helpful in managing some symptoms of cancer and side effects of cancer treatment. So using them involves a careful weighing of risks and benefits.

So for these reasons, oncology teams really do want to be part of the conversation as someone thinks through decisions around cannabis and cannabinoids. The ASCO guidelines encourage clinicians to be open and non-judgmental and welcome transparent discussions with patients about cannabis and cannabinoids. From there, clinicians should either assist personally if they feel qualified to do so, or refer a patient to high-quality information or an advisor with greater expertise.

As for the types of information that might be helpful to share with the clinical team, a person with cancer who consumes cannabis or cannabinoids might wish to share why they're turning to cannabis, where they get their products, the active ingredients in them—so is it mainly THC or is it mainly CBD­—how they consume them, are they smoking, are they vaporizing, are they taking them by mouth, how often they consume them, what do they experience as the benefits and risks of using cannabis and cannabinoid products? Their clinicians may wish to know whether or not the cannabis products are being used as an add-on to standard treatments or whether they're being used in the place of standard treatments. And as Dr. Roeland suggested, they probably will want to know how much this practice is costing the patient each month and whether it is affordable.

I think it's especially important to speak with your clinical team if you are considering using high-potency cannabis paste in an attempt to treat cancer itself. So not just manage symptoms, but actually treat cancer itself. The reason I think it's so important to share with your cancer team is that these cannabis pastes tend to have very, very high concentrations of THC and sometimes even CBD. And I think your cancer team can be helpful in thinking through the risks and benefits of that, helping to monitor side effects that might arise.

It is commonly the case that people feel a little bit of confusion with very high doses of oral THC.

Dr. Eric Roeland: I absolutely agree. And I think these high doses of cannabis products, they're often a tincture and delivered in a syringe. And it might look like black tar. And people are told to start off with the dosing of a grain of rice. But then they're told that the dose to treat their underlying cancer can be higher than a gram of cannabis a day. In some places it's a gram and a half. This is very high dosing, and it's going to cause people to feel extremely fatigued and increase the risk of falls and being sent to the emergency department. So I want to warn people about this practice in particular, because it can cause harm. We have no evidence that it actually works.

Greg Guthrie: Thanks for that information there. I was wondering, is there a certain person on the health care team that patients should consider talking to, or anyone?

Dr. Ilana Braun: I think anyone. Health care teams keep in close contact with each other. And so this kind of information would be shared amongst the team. So lots of cancer patients begin by sharing with their infusion nurse or their nurse practitioner. They don't even need to share necessarily with their oncologist as a first step. And anyone on the team should, after these guidelines, be able to access high-quality information through their institutions.

Dr. Eric Roeland: And for those patients who might be in a location where they don't have access to an expert or don't have access to educational resources, I think one of the strengths of this current guideline is that we include an appendix, which clinicians can actually use as a 1-page handout for patients and caregivers to answer some of these most basic questions.

For example, I think there's a lot of misunderstanding about how to take cannabis or cannabinoids. And what we do see is there's a big difference between ingesting orally an edible versus smoking or inhaling cannabis. And so, for example, cannabis when eaten by mouth can take up to 2 hours to have its peak effect. And unfortunately, what happens is that patients won't feel anything after several minutes to a half hour and then stack doses to the point that they get a much higher dose than they really need. And so we really encourage people to be aware of, if it's an edible, that it can take up to 2 hours. Whereas with your breathing it in or vaping, the effects can happen almost right away.

But again, it's important to recognize that cannabis, whether it's smoked, vaped, or ingested, can be in your body for up to 12 hours and may even impact your ability to drive. So it's important that if you are going to use these tools in combination with the rest of your medicines, it's important to do it in a safe way.

Another product that is now available, even over the counter at many grocery stores, is cannabidiol, or CBD. CBD in its pure form doesn't have the euphoria associated with products that contain more THC. Most people are using this as an anti-inflammatory, or targeting sleep.

I would like to recognize that in our review of the literature, we discovered that high doses, meaning more than 300 milligrams of cannabidiol a day, actually changed the measurable enzyme levels of the liver. These enzyme levels in the liver are the same levels that we use to determine whether or not you can get your chemotherapy. So you want to make sure that you're not taking excessive doses of cannabidiol, meaning more than 300 milligrams a day, because you don't want your chemotherapy delayed because your liver enzymes might be elevated falsely from the use of high doses of cannabidiol.

Greg Guthrie: That's great, Dr. Roeland. Thanks for adding that. As an additive or part of the cancer care plan, like with all medications, we need to be aware of what we're taking and report to our health care team so we can watch for interactions and potential side effects, right?

So what are the rest of ASCO's guideline recommendations when it comes to this guideline for cannabis and cannabinoids?

Dr. Ilana Braun: So as a committee, we submitted cannabis and cannabinoids to the same level of rigorous scrutiny that we would any other aspect of oncologic care.

I can think of few other ways to validate this area of oncology science than to do so. And after an in-depth evaluation, the ASCO committee concluded that of all the reasons that a cancer patient might medicate with cannabis, the best scientific evidence supports using cannabis or cannabinoids to help with nausea and vomiting caused by cancer drugs when standard medications for nausea and vomiting don’t work well enough.

Of note, ASCO guidelines make clear that there isn't evidence to hang our hats on that cannabis and cannabinoids can treat cancer itself. What's more, early evidence suggests that cannabis and cannabinoids may actually worsen outcomes for people taking a cancer treatment called “immunotherapy.” Gold-standard clinical trials are necessary to confirm these worrisome findings, but for the time being, people on immunotherapy should probably best avoid cannabis and cannabinoids. I think Dr. Roeland and I and the rest of the committee have hope that more scientifically proven indications will emerge as cannabis research progresses.

Dr. Eric Roeland: Dr. Braun has also pointed out to me that there's literature and evidence supporting the use of cannabis and/or cannabinoids for the management of chronic pain not related to cancer. And this has been actually described in other guidelines, and we need to recognize that our patients living with cancer often have chronic pain that may even predate their cancer experience. However, we do not have strong evidence to support that the use of cannabis and/or cannabinoids helps with cancer pain, which is a common reason that people are reaching for these medicines.

Greg Guthrie: Great, thank you, Dr. Roeland. Thank you, Dr. Braun. So this guideline also recommends the use of cannabis or cannabinoids mainly within the setting of a clinical trial, and why is that?

Dr. Eric Roeland: Well, Greg, I think it's incredibly important for people living with cancer and their loved ones to recognize that access to cannabis has far outpaced our ability to validate and study the best methods of using cannabis and cannabinoids in people living with cancer. Meaning access has far outpaced the science that supports its use. We also recognize that just because something is quote, “natural,” doesn't necessarily mean it is also safe, especially in combination with many of the drugs and cancer therapies that patients must receive while they're on treatment.

Therefore, for those of you very frustrated by the lack of evidence to support the use of these medicines in people living with cancer, you should be the first in line to volunteer for any studies that help us collect prospective evidence to demonstrate not only safety but efficacy.

I would also like to recognize how challenging it can be to perform these types of clinical trials based off of the formal designation by the federal government classifying this—cannabis and/or cannabinoids—as a Schedule 1 medicine, which creates multiple barriers for those clinical researchers who want to fully describe the safety and efficacy of these drugs. Therefore, if there is someone near you who is doing clinical research in this space, we greatly would appreciate your involvement in those clinical trials.

Dr. Ilana Braun: I agree with Eric. By participating in clinical trials, a person is doing a very kind thing for others, helping to advance the science behind cannabis and cannabinoids. Only through this controlled, systematic testing will the medical community understand whether cannabis and cannabinoids can be helpful for indications beyond the chemotherapy-related nausea and vomiting.

And we as a society need to understand whether cannabis or cannabinoids can be helpful for cancer pain, for cancer-related poor appetite, to name just a few. These clinical trials will help us move the field forward. And in terms of personal benefit, I could imagine that clinical trials might offer someone more quality-assured cannabis products, more scientifically based dosing guidelines, careful clinical observation should side effects present, and potentially efficacy. But of course there are no guarantees. That's why we're doing the trial.

Greg Guthrie: Thanks, Dr. Braun. Yeah, clinical trials are a safe way to grow our knowledge in cancer care and treatment. And definitely, as Dr. Roeland said, if we don't have evidence, the evidence in this current guideline to support recommendations, then the only way we can truly find that is by participating in clinical trials. And so I would just note that if you're interested in participating in a clinical trial, talk to a member of your health care team. And there are a number of online resources, such as ClinicalTrials.gov, where people can look for research. That's how we advance the science. So is there anything else people with cancer should know about using cannabis or cannabinoids during cancer treatment?

Dr. Eric Roeland: One key message I think for our listeners is to recognize that people have varying tolerances to this class of medicines. And what I frequently observe is that an older patient is offered an edible by their well-intentioned children who want their mom or dad to start eating more in the setting of their cancer. Unfortunately, I've experienced taking care of people that have had side effects associated with the use of cannabis or cannabinoids leading to even emergency department visits and hospitalizations.

And although these products are overall very safe and you cannot quote “overdose” on them or stop breathing because you're taking too much cannabis, it can be very uncomfortable to feel very confused and unable to stand or walk. That can be prolonged for many people, especially those who feel especially weak during their cancer therapy.

And our loved ones mean well, but sometimes the advice that they're providing could actually cause harm. And sadly, I've had many children of patients who have felt incredibly awful after their loved one had a side effect from these medicines, which actually delayed their cancer care.

Greg Guthrie: Excellent point, Dr. Roeland, thank you for that. Dr. Braun, any final notes?

Dr. Ilana Braun: Yeah, so following on Dr. Roeland's thoughts, I would also add that it's important to think about safe storage for such products, particularly if there are children or pets in the home. Cannabis products sometimes look like medicine and sometimes look like candy or baked goods. And so it's important to store them out of the reach of minors and pets.

And the last thing I'll emphasize is this: if you are living with cancer and medicating or thinking of medicating with cannabis or cannabinoids, please consider sharing this information with your clinicians so that they can help you strategize about an optimal course.

Dr. Eric Roeland: I would like to take a moment to thank the American Society of Clinical Oncology for recognizing that we need to address this important need for people living with cancer. And rather than ignore something that's happening every day in the clinic, ASCO chose to convene a panel of experts and coalesce the data and try to figure out what best practices are in this space.

And to that, I am very proud to be a member of ASCO who chooses to lean into these difficult topics rather than run away. I would also say this is a keen opportunity for everyone to advocate for more research in this space. Because talented folks like Dr. Braun, who want to do research in this space, need advocates, need participants, and need funding to fund this type of research. So again, kudos to ASCO, the members of the panel, and, of course, our patients.

Dr. Ilana Braun: Thank you, Eric, for saying that. I am so grateful to have been a part of this really cutting-edge process. And I think that clinical guidelines will help to de-stigmatize cannabis care in a meaningful way in the oncology clinic.

Greg Guthrie: This has been great. Thanks, Dr. Braun. Thanks, Dr. Roeland. If I can interject, I think one of my biggest takeaways here is every patient, caregiver, if they are or are considering cannabis or cannabinoids, the biggest question is to ask, why am I choosing this? And then to find a member of their health care team and talk to them about that. And that's how we protect each other's health and we ensure the best results possible for everyone. So I want to thank you both so much for this engaging discussion. Dr. Braun, Dr. Roeland, thanks for joining us today. And our listeners, if you'd like to learn more about this guideline, please visit www.asco.org/guidelines. Thanks so much for joining us today, and be well.

ASCO: Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care.

And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.

[music]

Understanding Hospice Care, with Karan Jatwani, MBBS, and Amy Case, MD, FAAHPM

mercredi 28 février 2024Duration 21:18

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals.

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. Guests’ statements on this 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. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

In this Meaningful Conversations podcast, Dr. Karan Jatwani talks to Dr. Amy Case about what people with cancer should know about hospice care, including the difference between palliative and supportive care and hospice care, who is eligible to enroll in hospice care, and the types of support available for people receiving hospice care and their family and caregivers.

Meaningful Conversations is a Cancer.Net blog and podcast series that describes the important discussions people may need to have with their providers, caregivers, and loved ones during cancer and offers ways to help navigate these conversations.

Dr. Jatwani is a Medical Oncology Fellow at Roswell Park Comprehensive Cancer Center.

Dr. Case is the Lee Foundation Endowed Chair of the Department of Palliative and Supportive Care at Roswell Park Comprehensive Cancer Center, and Professor of Medicine at the Jacobs School of Medicine and Biomedical Sciences of the University at Buffalo.

View disclosures for Dr. Jatwani and Dr. Case at Cancer.Net.

Dr. Jatwani: Hi, everyone. My name is Karan Jatwani. I'm one of the 3-year fellows at Roswell Park Comprehensive Cancer Center. I have finished my palliative care fellowship from Memorial Sloan Kettering Cancer Center. And I am interested in the integration of oncology as well as palliative care, and that is where I envision my future career to be. And it's my pleasure to be involved in a podcast with Cancer.Net and looking forward to it.

Dr. Case: Hello. My name is Amy Case, and I'm the chair of the Department of Supportive and Palliative Care here at Roswell Park Comprehensive Cancer Center, and we're in Buffalo, New York. So I appreciate being invited to speak today. And we also have a fellowship that we run here and a pretty comprehensive department with 8 divisions that include palliative, social work, psychiatry, psychology, spiritual care, bioethics, and geriatrics, and also employee resilience. So we have a lot of kind of passion projects we work on in our supportive care department.

Dr. Jatwani: Thank you so much, Dr. Case, for joining us today. I think I've always admired your work. And just to start off, just for our listeners and our audience, if you can just give us a brief idea of what palliative care is, I think that would be the best segue to enhance the discussion.

Dr. Jatwani: So “to palliate” means to make feel better. And when I talk to patients about what it is that we do, I talk about how we take care of the whole person, which includes the physical symptom management, the emotional support, which could include psychiatry, psychology, or social work support of the emotional piece. And then also the spiritual support, which often we work as a team. In order to be palliative care, you actually need to be a team. It can't just be one physician, for example, doing palliative. You need to work as a team. So generally, a core team consists of a physician, a nurse, a chaplain, a spiritual care professional, and a social worker at its core. But sometimes it can be a nurse practitioner providing that or other specialists helping on that team.

Dr. Jatwani: I think one of the key questions that always arise with the patients is, as soon as you talk about palliative care, patients start equating it to death. How do you make sure that the patients you're interacting with, how do you differentiate it with them, and how do you relieve that anxiety whenever the patient hears “palliative care”?

Dr. Case: So no matter what you call the work that we do, there will always be a stigma. So if we change the name to yellow banana, people would be afraid of yellow bananas, right? So I think that the word hospice has-- I joke that it's kind of like a 4-letter word type of situation. We call it “the H word.” Sometimes patients are really fearful to hear that word. And even now, palliative has adopted this stigma. So generally, what I do is I kind of say that it's focused on quality of life. The main goal is to help people feel better, live a better quality of life, to get through their cancer treatments. And I also educate them that people who receive palliative care tend to have better outcomes. Patient-reported outcome metrics are better. So patients often have a prolonged survival. They may be able to tolerate their cancer treatment better and get through those treatments. And that generally, I would say, is something that they're happy to hear.

That's something that they're usually, "Yeah, sign me up for that." When we start with somebody-- we spend an hour with every patient for a new visit. When I start with them, they're really skeptical. Oftentimes, they're looking at me mistrustfully, like, "What is this?" And by the end of the visit, they say, "Where has this been from the beginning of my cancer journey? And why am I only getting this now? This was the best interaction I've had at this organization." And it's because we give them kind of what we call a “wrap-around care,” which is almost like a big hug. We use a lot of skills that include empathy. And with our communication, we often spend a lot of time listening. And I think people really walk out feeling heard. Even if you can't solve it or cure it, you can discuss things that can just make them feel that you were there for them and you listened. And that is very powerful.

Dr. Jatwani: I 100% agree. I mean, that has been my sort of experience as well during my fellowship. I took a lot of those learnings with me when I see my patients. But also, I think coming from an oncology standpoint, I can definitely now understand that I have been at fault when I have not given that palliative blanket that you were talking about at different times. And so my question is, when can patients ask for palliative care? And we'll discuss “the H word,” as you mentioned at the beginning. So we'll discuss with that as well. But when should patients undergoing cancer treatment, when should they ask for involvement of palliative care, or they should advocate for themselves or even the caregivers should advocate?

Dr. Case: Yeah. So I think that generally, palliative care, the beauty of palliative care is that it doesn't really have a time limit. Someone can ask for it anytime. And often, we encourage people right from the beginning. So there's people who may be looking for that extra added support right from the beginning. And so we usually encourage oncologists and the oncology teams to start those discussions themselves.

Dr. Jatwani: And I think at this point of time, I would like to definitely ask you. I think you mentioned “the H word” in the beginning. So can we discuss a little bit more about what is hospice care?

Dr. Case: So palliative care is provided on a trajectory. So it can be provided anytime, even for survivors, for people who are earlier in their diagnosis. But hospice has a timeline on it because it's actually a Medicare benefit that it's like almost like an insurance benefit that kicks in, but the government pays for the patient's care. And so in order to enroll or sign up for hospice, a patient has to have certain criteria in order to meet that. In order to get those things paid for. And so hospices have to—generally, it's when a patient has a life expectancy of 6 months or less, and they have decided that the cancer treatment, meaning chemotherapy, radiation in most cases, immunotherapy, the burden of that is higher than the benefit.

Most of the patients who see us in palliative are still getting their cancer treatment, and we're helping them walk the journey with them through their treatment, helping them feel better, starting those conversations. And then we do something called a transition to hospice. So many of the patients we see in palliative end up transitioning to hospice. How is palliative care different than hospice? How is hospice different than palliative care? They're very similar. The philosophy of care and the way it's provided is almost exact, meaning that it's a team-based approach made up of physical, emotional, and spiritual support for the patient provided by a team. Although in palliative care, many times that's done in a clinic or an inpatient setting. There are home palliative programs that exist. We have one here at Roswell as well. But hospice, 80% of the time, is done at home. Because generally, when people prefer to pass away and we talk to them, where do they want to be at the end of their life? I'd say 95% of people do want to be at home if that's feasible. The biggest barrier that they are worried about dying at home is that they worry about being a burden on their loved ones.

And so that's the way I frame those discussions, is that I ask them about what are the things that they're hoping for. What are the things that they're worried about? And when I find out, inevitably, like I said, it's probably the number 1 fear of people to be a burden on their loved ones. It's this wonderful thing that can reduce burden on family to help care for you and have you be at peace in the place that you wish to be.

Dr. Jatwani: I 100% agree. I think you framed it perfectly that if the discussions-- I think, as you said, they should happen at the right time point. And the other thing is I think they should happen often. They should not happen only once. They should happen at every juncture of time when the cancer care has sort of transitioned into going into the more risk and less benefit window. And that's a spectrum, as you mentioned. It does not have to happen only once, and the provider feels, “OK, I’ve done that discussion. Now I don’t have to do it again.”

Dr. Case: It’s a journey.

Dr. Jatwani: It’s a journey, yes.

Dr. Case: I think we always talk about a journey and that advanced care planning does not happen, excuse me, just once in the trajectory. It happens over multiple time points. And I call it “loosening the lid,” where the lid is often on really tight. There’s maybe often mistrust of the health care system. People are really scared. And you really need to give them that emotional support. And that’s why palliative is so beautiful because we provide them that wrap-around hug when they’re feeling at their most vulnerable. And then when they have comfort with us, then it’s much easier to discuss these really tough topics. And I think establishing rapport, getting to know them as a human being and who they are is extremely important. So, for example, my style is to start any medical visit with a social interaction and asking them about themselves socially. I say, “Let’s put the cancer aside. I want you to tell me about you. Tell me about your family. Tell me about the things that you enjoy doing for fun.” And they often laugh because they want to talk just about the cancer, right? They say, “I don’t have fun anymore.” And then I try to ask them about the things they did before they had cancer. And you see them light up, and you see the rapport being built, and you see the trust. And once you have those types of relationships, these discussions become much easier.

Dr. Jatwani: I agree. So just to transition a little bit more about hospice care, I think you talked about that this hospice care is a Medicare benefit. Can you tell our audience, is it only at home or is it available inpatient as well? And can you speak a little bit about that?

Dr. Case:  Sure. So I mentioned before that generally, the majority of hospice care is preferred to be in the home, and really taking care of someone at the end of life actually can be less scary when you have the support of hospice. And so anyone who’s in the hospital where a discussion is had and then advanced care planning is done, and they say, “You know what? I don’t want to end up being on a ventilator. I’m going to elect to be a, “do not resuscitate or allow natural death.’" If that happens, I actually think it's almost imperative for hospice to also be consulted and offered. Because if you send someone home that is a “do not resuscitate” without those family support in place, the family will struggle. And so I think that it goes hand in hand. So dying at home goes hand in hand with having hospice in place. End of story. You need to have those supports in place. I do not think it will work out well for the family if you do not. And so there are rare circumstances where some physicians provide that support or home palliative can provide that support. But hospice really is the gold standard. So I'd say most of it is in the home.

But once someone enrolls in hospice, there is caveats where if a patient is having uncontrolled symptoms that are not managed by the nurses in the home and the physicians by phone or by home visit, that the patient may be able to be brought in to an inpatient hospice unit or a hospital. They can unelect—to come off of, or unenroll—in hospice. For example, they change their mind. They decide, oh, they fall they break a hip, OK? And hospice is not going to fund a non-cancer-related hip fracture repair. So they would have to unenroll from that Medicare benefit, hospice Medicare benefit, and enroll in a different part of their insurance. And it's very easy to enroll and unenroll. And so there are different parts of that Medicare benefit that pay for different things. And so if somebody gets a hip fracture, it doesn't mean they have to not have it repaired. I mean, so you adjust and unenroll them from hospice, get the hip repaired, and then enroll them back in the hospice. And so those types of things can totally be done. It doesn't mean the patient can never come back to the hospital. It doesn't mean they can't change their mind. It doesn't mean that if, say, they get pneumonia, that they can't have their pneumonia treated. So simple infections, like Clostridium difficile (C. diff), pneumonia, the hospice actually gives antibiotics.

They manage a lot of medical treatments like anticoagulation and things like that. So there are, depending on the hospice, leeway with some of those medical treatments. For example, total parenteral nutrition (TPN), percutaneous endoscopic gastrostomy (PEG) tubes, some of those things can be managed in hospice. However, if a PEG tube or a TPN is causing more burden, they will continue to have those discussions about, is this treatment in the best interest of comfort and quality of life? And so that's generally the philosophy of care. And so, yes, they can be inpatient. There can be coming back to the hospital. And there are hospice inpatient units kind of all over the country. Some cities may not have hospice inpatient units, and they have other things like something called a “comfort home,” where comfort homes are depending on the area, the region that you live. Comfort homes exist in some cities where they're run by volunteers, and a patient may not be able to be at home, but they can go to a comfort home. Sometimes hospice can be provided in an assisted living where a patient's home is actually not home, it's in a facility or it can be provided in a nursing home. However, I think there's a misperception that hospice pays for the room and board of those places, and that is actually not true.

So if someone needs a facility to live, then the family or the patient is on the hook, unfortunately, for the room and board. And so a lot of times, that delays discharge. So, for example, family does not want to take that patient home. They are not able to do that. The patient then needs a facility with hospice. The assumption is the hospice will pick up the bill of the facility. So that does not happen. But hospice covers all of the costs related to the care of the patient that's related to their hospice diagnosis.

Dr. Jatwani: For patients who are living alone, who are in the elderly population, who are undergoing cancer-directed treatments, for those patients, is hospice an option? If it is, because that is always a challenging area that we face, how do you deal with those patients?

Dr. Case: That's very challenging. Generally, we would call on social work and some of those specialties to help us figure out a support care network for that patient. And so often, you can actually recruit folks to take shifts coming in and checking on that patient. And so, yes, you can have hospice care for a patient who has a care-- generally, you need to have a caregiver who is around for that patient. Ideally, in an ideal world, there's somebody with that patient 24/7 when the patient is really ill. If the patient is pretty functional and they're on hospice, walking around, there may be some hours out of the day where they may not need someone with them. And really, we kind of determine that on a case-by-case basis. I would say it's not a door-shut situation that if someone lives alone, they could never have hospice. I would not say that. But in an ideal world, we do need to recruit someone to be there with the patient.

If someone has absolutely no one to be there with them during hours during the day, which I think is pretty rare, then generally, if the person is too ill to stay home alone, it'll be a conversation that you have with that patient that they may be moved to a higher level of care, meaning that they may need a skilled nursing facility with hospice on board coming in and checking on them. That's their new home, or they may need an assisted living. And there are some facilities that provide their own hospice, meaning that if you go to that facility, they have a team that's built into that facility that provides them the end-of-life care at the facility, and they don't allow in external hospices. So it kind of depends on your area where you're practicing and asking those questions as, "Do you have an external hospice or do you provide hospice services internally?" And those are questions I often steer patients to ask.

Dr. Jatwani: Just some parting thoughts on in terms of, as you said, hospice has a very selective criteria. And some patients might say, "How can you prognosticate me for living less than 6 months?" That's a challenging question that we often get. And I think you have answered it partly, that it's enroll “on and off switch” kind of situation. But what if a patient starts feeling much, much better on hospice and they feel that they want to come back and get cancer-directed treatment, how does palliative care and hospice care come into that domain?

Dr. Case: Prognostication, when a physician is asked to prognosticate a patient, we call it “the art of prognostication” because you can't always look it up in a textbook and get the right answer. And what one physician may determine is a prognosis for a patient, another one may give a different one. Because we look at the same things, but a lot of times, there's a clinician estimate that comes into it that is really one of those, you put a bunch of facts together and you come up with what we call an estimate. And so sometimes, we may be correct. Sometimes, we may underestimate or we may overestimate.

If a patient enrolls in hospice and they, for example, are doing a lot better, they're outliving the 6 months, the hospice programs often reevaluate those patients, and they do allow folks to stay enrolled with hospice care sometimes quite longer than the 6 months. Sometimes, people are on hospice a year or even longer. What they need to document is that the patient has an ongoing need where they need the multi-disciplinary team supportive care. And so as long as you meet certain criteria, and generally, the criteria are often that they have the continuing progression of the cancer or whatever the other medical illness is, the disease itself, and advancing illness, whether that be chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF). It doesn't have to just be cancer. And you need to also have often a documentation of potentially continued functional decline or functional impairment. So prognosis is tied hand in hand with functional status. And so we don't just look at the computed tomography (CT) scan when we're determining prognosis. We look at nutritional. We look at weight loss. We look at appetite. We look at functional status and comorbidities. And there's a lot of other things that go into that, not just, “Is the tumor growing on the scan, yes or no?” So it's really important to look at a wide array of things when we're determining prognosis.

Dr. Jatwani: Yes. And I think that sort of I just wanted to give our patients some idea of how we determine. I know there are a lot, many things that we have not covered, and we haven't even touched the expertise of Dr. Case, which we hope to do that in the future. And from my end, these are the questions that I had. And we hope to reconnect soon Dr. Case, and get some more insights into other aspects of palliative care, which you have done a lot of wonderful work in.

Dr. Case: Thanks, Dr. Jatwani.

ASCO: Thank you, Dr. Jatwani and Dr. Case. Find more podcasts and blog posts in the Meaningful Conversations series at www.cancer.net/meaningfulconversations.

Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care.

And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.

What is Pediatric Palliative and Supportive Care, with Abby Rosenberg, MD, MS, MA

jeudi 5 octobre 2023Duration 09:54

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals.

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. Guests’ statements on this 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. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

In this podcast, Dr. Abby Rosenberg discusses what parents and family members of children with cancer should know about palliative and supportive care. She addresses the way palliative and supportive care is different from hospice or end-of-life care, what to expect when meeting with the palliative and supportive care team, and the ways this type of care can support children with cancer and their families.

Dr. Rosenberg is the chief of pediatric palliative care at the Dana-Farber Cancer Institute and Boston Children's Hospital in Boston, Massachusetts.

View Dr. Rosenberg’s disclosures at Cancer.Net.

Dr. Rosenberg: Hi, my name is Abby Rosenberg. I am the chief of pediatric palliative care at the Dana-Farber Cancer Institute and Boston Children's Hospital. And today we're going to be talking about what pediatric palliative care is, maybe demystifying it a little bit, and more importantly, talking about how it can help kids with cancer and their families.

I think one of the most important things to know about palliative care is that it is a specialized kind of medical care for people who live with serious illnesses like cancer. And folks who are receiving palliative care are receiving extra support to help them with complicated symptoms, pain, distress, as well as complicated decisions that they might need to make in the process of their illness.

Palliative care is really intended to help enhance a person's current care by focusing on their quality of life, and not only the patient's quality of life but also the quality of life for the whole family. In pediatrics, that includes parents, siblings, and other kids who might be members of the community. The way I think about palliative care is that it is really intended to help people live their best lives for as long as possible. And so with that in mind, it can really help a whole bunch of people who are affected by pediatric cancer.

And the way we do that is by delivering help through what we call an “interprofessional team.” And so a palliative care team in pediatrics includes physicians, it includes nurses, includes advanced practice providers like nurse practitioners, it includes social workers. It may also include child life specialists, psychologists, chaplains, other folks who are involved in the child's overall well-being.

Palliative care can be provided at any time in a child's cancer experience and anywhere. It can be delivered while you are in the clinic, while you are in the hospital staying overnight, and we can deliver it to you at home.

Some people confuse palliative care and hospice care, and those are 2 different things. So palliative care can be delivered concurrently with cancer-directed and cure-directed therapy.  And generally, when we talk about hospice, it is for patients and families who have started to understand and recognize that perhaps their cancer might not be curable, and they are making the courageous and loving decision to switch gears and focus more on quality of life without continuing cure-directed therapies. Hospice care, like palliative care, can be delivered in a bunch of different settings. And most times in pediatric hospice care, we think about delivering it to a child in their home and within their home community.

Some of the things that parents often ask us when we're talking about palliative care for their kids with cancer is, how do I know if my child is ready? And how do I ask for it? The answer to the first question is that again, your child can be ready for palliative care at any time. And it's really intended to help you navigate the heart of having a child with cancer. And that can, again, include anything from making complicated decisions, processing complicated information, making plans for you and your child's future, and managing complex pain and symptoms. How you ask for it is in most pediatric cancer centers, there is an embedded palliative care team that can help you. So you can ask any of your doctors and nurses and other folks who are taking care of you and your family.

The last thing I'll say about palliative care is that it is a subspecialty team of experts who are good at all of these things like communication and pain and symptom management. Most pediatric oncologists do what we call primary palliative care, and that is they help support you in all of these things, too. So they help talk to you about complicated decisions and upcoming plans. They help talk to you about what might be coming with your child's symptoms, and they really help you navigate the cancer experience. And so what we try to do in pediatric palliative care is partner with you and your oncology team so that we just become a bigger team, thinking more holistically about all of the ways we can support you and your family. I think, in the end, the message of all of this is that every person taking care of a kid with cancer is trying to help that kid to thrive. And pediatric palliative care can be a really important resource to help kids to do that to the best of their abilities.

So another question that we can hear from parents and families is what to expect when the palliative care team gets called. I think at a minimum, the expectation is that you will meet more people who will be really curious about your family and your child. They will ask a lot of questions about what matters to you, what are your values. They'll ask you questions about what is happening with the child's illness, what are your worries, what are your hopes, and what they do with all of that information is they help you process it, and they help translate it into something that can work for your child's overall cancer care. Part of meeting a palliative care team is always meeting all of these different members of the team, so you'll meet doctors, nurses, nurse practitioners, social workers, perhaps chaplains, child life specialists, psychologists, all of the folks that I previously mentioned. And the reason we have those big teams is because we recognize that each member of that team can help you with a different part of your whole cancer experience. And so for example, if your faith and your spiritual community is a really big part of how you are coping with being the parent of a child with cancer. We want to connect you with that part of your own strengths and resources and figure out how to support you while you are under our care in the hospital setting.

So one other thing that pediatric palliative care teams can help with is talking within your family. So sometimes we get questions about how do I talk to my child about what's happening, or how do I talk to my child's brothers and sisters about what's happening? Maybe it's a, how do I support their brothers and sisters? It could be about the challenges of being a parent with one kid in the hospital and others at home, and how do you maintain your identity as a parent? How do you still be a good parent to a large family when you have one child who's really sick with cancer? And we in palliative care really can help you with that with all of the different resources and team members that I mentioned, and we can help you talk to your other kids. We can help your kids talk to each other. We can help you think as a parent about how you can navigate the situation that no parent could ever have planned for until they're in it. The other thing that we do within palliative care and the other thing you can expect is we partner very closely with your oncology team, not to replace them or make decisions on their behalf, but more to help them know you better. And so what we do is we talk together about what we are hearing from you, about what your child might need. We provide advice, we provide recommendations, for example, for how to manage perhaps complicated symptoms. We might have conversations with you and your oncologist together in the room to think as a bigger team about how we can support your child's well-being. And we'll often ask you questions in the midst of all of this about what you think is important for your child, how you want to spend your time, how you define your child's quality of life, and how we, as a larger program, taking care of children with cancer, can do better to make sure your kid is thriving for as long as possible.

ASCO: Thank you, Dr. Rosenberg. Learn more about palliative and supportive care at www.cancer.net/palliative.

Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care.

And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. To help fund Cancer.Net and programs like it, donate at CONQUER.ORG/Donate.

2018 ASCO Annual Meeting Research Round Up: Childhood Cancers, Older Adults, Multiple Myeloma, and Lung Cancer

mercredi 22 août 2018Duration 23:39

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer.

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. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

The ASCO Annual Meeting brings together physicians, researchers, patient advocates, and other health care professionals to discuss the latest in cancer care. The research presented at this meeting frequently leads to treatment advances and new ways to improve the quality of life for people with cancer. In today’s podcast, Cancer.Net Associate Editors share their thoughts on the most exciting and practice-changing news to come out of the 2018 ASCO Annual Meeting.

First, Dr. Daniel Mulrooney will discuss a large international study on maintenance chemotherapy for rhabdomyosarcoma, and several studies on the benefits of physical activity for survivors of childhood cancer. Dr. Mulrooney is an Associate Faculty Member in the Division of Cancer Survivorship at St. Jude Children’s Research Hospital. He is also the Cancer.Net Associate Editor for Childhood Cancers.

Dr. Mulrooney: This is Dr. Dan Mulrooney from St. Jude Children's Research Hospital. I'm the Deputy Director of the After Completion of Therapy Clinic at St. Jude and primarily care for survivors of pediatric solid tumors. During this year's Annual Meeting of the American Society of Clinical Oncology, a very interesting, large, international study investigating maintenance treatment for rhabdomyosarcoma was highlighted during the plenary session. Maintenance chemotherapy, or prolonged low-dose chemotherapy, is used most frequently in the treatment of acute lymphoblastic leukemia, or ALL, but less so for pediatric solid tumors.

In a study conducted by the European Paediatric Soft Tissue Sarcoma Study Group that included patients from 14 different countries, investigators studied adding maintenance chemotherapy to the treatment of high-risk rhabdomyosarcoma. Rhabdomyosarcoma is a rare tumor, which mostly occurs in children but can also present in adults. Fortunately, treatment is often successful. But up to 20 to 30 percent of patients may still relapse after treatment meaning additional treatment is needed and making long-term cure more difficult. Standard treatment involves 6 to 8 months of intensive chemotherapy, radiation, and surgery. These investigators wanted to know if adding additional low-dose chemotherapy for six months after standard treatment might improve survival. They studied patients greater than 6 months to less than 21 years of age with high-risk disease based on the histology and location of their tumors. 186 patients were randomized to standard therapy. And 185 were randomized to receive the additional 6 months of maintenance chemotherapy, which included vinorelbine given IV, weekly, for 3 weeks every month, and cyclophosphamide taken orally everyday. And at 5 years, the overall survival was statistically better in the maintenance chemotherapy group, 87% versus 74% in the standard therapy group. Fortunately, toxicity from the additional chemotherapy was minimal and mostly included low blood counts, although approximately 30% of patients also had an infectious complication. These investigators concluded that this additional maintenance therapy is an effective and well-tolerated strategy for patients with high-risk rhabdomyosarcoma and proposed to investigate this method in other solid tumor types.

Now additionally, a number of studies presented at the meeting highlighted the importance of physical fitness among childhood cancer survivors. A study from the University of New South Wales in Sydney, Australia collected physical activity data from the parents of childhood cancer survivors and a control population. Fortunately, the parents of survivors reported more physical activity in their children than the control parents with 31% of survivors meeting the recommendations of the American Cancer Society for moderate to vigorous physical activity, which is greater than or equal to 300 minutes of activity per week. However, nearly two-thirds of survivors did not meet the recommended activity level.

Subsequently, a large study from the St. Jude Lifetime Cohort assessed 577 childhood cancer survivors, and 286 healthy community controls. In this study, individuals underwent a series of tests including an echocardiogram and cardiopulmonary exercise testing on a treadmill. Measures of relative peak oxygen uptake or “VO2 max” were obtained to assess exercise capacity. Survivors had a lower VO2 max compared to controls, and this worsened with increasing intensity of previous exposure to cardiotoxic therapies such as anthracyclines and chest radiation. This was also associated with a relatively new measure on echocardiography called global longitudinal strain. In fact, global longitudinal strain, and not the more common measure of ejection fraction, was associated with impaired VO2 max among cancer survivors. Global longitudinal strain may become an important new screening marker for cancer survivors.

And finally, 2 studies from the Childhood Cancer Survivor Study, or CCSS, highlighted the importance of exercise for childhood cancer survivors. The CCSS is a multi-institutional study that uses questionnaires to assess outcomes among a large population of cancer survivors from across North America. Investigators collected data on physical activity, classified as metabolic equivalent tasks, or METs, and expressed as MET-hours per week. Exercise levels were categorized into groups ranging from none or 0 MET-hours per week and increasing incrementally to 3 to 6, 9 to 12, and 15 to 21 MET-hours per week. 3 to 6 MET-hours per week is equivalent to approximately 20 minutes of brisk walking per week, and 15 to 21 MET-hours per week is equivalent to approximately 60 minutes of brisk walking every day for 5 days per week.

And in the first study, investigators showed a decrease in psychological burden among cancer survivors, decreased depression and somatization, and improvements in quality of life and cognitive function among those with increased levels of physical activity. As little as 20 minutes of brisk walking per week was associated with this lower psychological burden. Importantly, in a longitudinal analysis, CCSS investigators showed a decrease in mortality with increasing intensity of physical activity. And looking over eight years, survivors who increased their level of exercise had a 40% reduction in the rate of death compared to those who maintained a low level of exercise. Taken together, these studies presented at the 2018 ASCO Annual Meeting highlight the safety and significant health and psychological benefits of exercise for survivors of childhood cancer.

ASCO: Thank you Dr. Mulrooney.

Next, Dr. Hyman Muss will discuss a study on a tool that can be used to improve communication between older adults with cancer and their doctors. Dr. Muss is a Professor of Medicine at the University Of North Carolina School Of Medicine, and the Director of the Geriatric Oncology Program at the University of North Carolina Lineberger Comprehensive Cancer Center Program. He is also the Cancer.Net Associate Editor for Geriatric Oncology.

Dr. Muss: My name is Hy Muss, and I'm a medical oncologist with a major interest in geriatric oncology. And today I'm going to talk about what I think is 1 of the most exciting studies I've seen in years pertaining to cancer care in older patients, an ASCO presentation by Dr. Supriya Mohile and our colleagues on a large, randomized trial they did, focused on improving communication of older patients with their physician.

So this was a very large PCORI-funded trial in the United States, a federally funded study for patients 70 and older with a whole variety of different cancers. And in this study, what happened were older patients were either randomized to an intervention, which included giving a questionnaire, a geriatric assessment, that asked about function and all types of other issues related to older people, social support etc. And together with that information, there were recommendations for the doctor to talk with the patient about, such as if they had poor social support, maybe get them to a senior facility. Or if they had problems getting meals, set up meals on wheels. Or if they had a physical handicap, get them to physical therapy to try to overcome it. So that was all provided to the doctor.

And the second group of patients just got kind of very little information sent to the doctor. And so what happened in this trial, which was extremely exciting, was that they had 500 patients accrued to this, so this is a huge number of patients. And about half were given the intervention arm and half were just routine care. And it showed that the patients who went through the intervention, and that information was provided to the doctor, had much better communications with the doctor about their illnesses, about their cancer care.

And more importantly, it led to interventions that were very helpful and that probably improved their quality of life and physical well-being, although, these data were not reported in the presentation. And this is really special, because the standard care arm, a lot of things were not discussed, and a lot of things that older patients had may not be related to their cancer but are extremely important for the oncologist to know. And these are things like, "How are you doing at home? Are you able to care for yourself? Do you pay your bills? Do you have good social support? Can you go to the grocery store, etc.? Also, what are your friends like? What are your family like? Do you have people interested in you that take you out, do things?" And frequently, those issues aren't discussed, and they're integral to the care of older people.

So they showed the value of a geriatric assessment, which discovers many more things than the usual questions doctors ask you in 1 or 2 sentences about your function. And more importantly, they improved care, they improved communication, and they led to interventions that make people's lives better, and perhaps, someday a lot longer.

So I thought this was a terrific study. Dr. Mohile and her colleagues broke the glass on showing how important geriatric assessment—where we ask questions about your function, about your health and other things, that are generally not part of a routine history and physical—how important this is to improving care. So I hope you take a look at this at the ASCO site. It's a wonderful trial, and I think it's the beginning of many more similar trials to come. Thank you.

ASCO: Thank you Dr. Muss.

Next, Dr. Michael Thompson will discuss several topics in multiple myeloma that were explored at the 2018 ASCO Annual Meeting, including a discussion on the cost and value of myeloma drugs, a study that compared different doses of a treatment for relapsed refractory multiple myeloma, and several studies that explored ways to personalize myeloma treatment, also known as precision medicine. Dr. Thompson is a hematologist/oncologist, and the Medical Director for the Early-Phase Cancer Research Program and the Oncology Precision Medicine Program at Aurora Health Care in Wisconsin. He is also the Cancer.Net Associate Editor for Multiple Myeloma.

Dr. Thompson: Hello. I'm Mike Thompson, a hematologist/oncologist at Aurora Health Care of Wisconsin. I'm also the Associate Editor for Cancer.Net on myeloma. Today, I'm going to discuss a few myeloma-related areas reported at the ASCO 2018 Annual Meeting. The first is a value debate, which was on Sunday, between Mayo colleagues and friends, Dr. Fonseca and Dr. Rajkumar, who had discussed the question of costs and value in multiple myeloma in this session, Global Myeloma, Health Disparities, and the Cost of Drugs. They disagreed on some issues. But my take-home from their debate was that both the absolute costs of care as well as value, which was utility divided by cost, are important to our entire healthcare system as well as to patients and their families. There was no immediate changes to costs of care after that debate, but I think it's something important that we will all be watching as new drugs are developed in the future.

Another important study was the A.R.R.O.W. study, which was reported on by Dr. Mateos, and was later published with the first author, Dr. Moreau. This was a phase III study of 2 different doses of carfilzomib with dexamethasone in relapsed and refractory myeloma patients. So there was the traditional twice-weekly dose, and there was the once-weekly dose. And the conclusions were that the once-weekly dose with a dose up to 70 milligrams per meter squared improved progression-free survival and overall response rate. And later in the publication, it showed that it improved survival versus the twice-weekly dose at 27 milligrams per meter squared, with a similar side effect profile.

So that is very good news for patients that might get that doublet therapy and have to come into the office less frequently. The caveats with that study are that this dosing was not compared to an intermediate dose of 56 milligrams per meter squared, which has been widely used after that study was published a few years ago. So it's looking at the lowest dose versus the highest dose. And it's also for patients with a performance status of 0 to 1, which means they're doing well. And for many of those patients, we wouldn't use a doublet therapy; we'd use a triplet therapy. So that may limit the applicability in practice, at least, in the United States. And we also don't know that combining this Kd regimen with another myeloma drug is safe or effective, so those studies are ongoing.

And the third topic that was of interest at ASCO 2018 was precision medicine in multiple myeloma. So there were at least 3 parts to this. One is risk stratification. And this has been going on for a while, looking at the cytogenetics and FISH. And the NCCN and Mayo mSMART guidelines give some guidance on how to treat based on risk. Also there was talk about the CAR-T therapies, which may be the most specific or precision type of medicine you can get. And those studies are ongoing but not yet widely available for myeloma, but everyone is very interested in those data. Other therapies were targeted therapies, and there are not as many examples in multiple myeloma as there are in some diseases like lung cancer. But there are some alterations such as BRAF, where BRAF inhibitors are used or can be used in a few patients, in myeloma that have that. And there's great excitement about the BCL-2 inhibitor or venetoclax for t(11;14), which is the most common translocation found in multiple myeloma.

So those are some of the main things I took away from this ASCO meeting. We really need to think about costs and value and the impact it has on our patients. We need to think about trying to dose drugs in ways that are more convenient to patients, and in this case, seemed to be more beneficial. And we have to keep looking ahead to do more things with targeted therapies to see if we can get away from some of the toxicities of some of our chemotherapy agents. Coming up will be more studies over the next year for ASCO 2019, and I look forward to seeing what changes between now and then.

ASCO: Thank you Dr. Thompson.

Finally, Dr. Jyoti Patel will discuss the ongoing research in targeted therapy and precision medicine for lung cancer. Dr. Patel is Professor of Medicine and Director of Thoracic Oncology at the University of Chicago and is the Cancer.Net Associate Editor for lung cancer.

Dr. Patel: Hello. I'm Jyoti Patel. I'm the Director of Thoracic Oncology at the University of Chicago and a long-time ASCO member, and I would like to talk to you today about some of the most important research takeaways from our recent ASCO Annual Meeting. So remember, this is a meeting where about 40,000 cancer care providers come together to discuss and to present the most groundbreaking research and its impact for patients. So this is certainly a meeting that is exciting for all of us and really represents, I think, the best of what's happening in the field.

I think when we look at what's happening with lung cancer—because there's so many people affected with lung cancer in the United States where nearly 200,000 people every year are diagnosed with lung cancer—we can say that we've made significant leaps forward in the past decade, and it's really changed the paradigm in how we treat patients with advanced disease. So it's a disease in which systemic therapy is really the mainstay of therapy because it's not confined to the lung where we may do surgery or radiation, this is really a disease that has spread and is treated as a more chronic condition.

Our efforts at understanding the biology of cancer have really now come back to the bedside, and many of the groundbreaking research trials that were presented really revolved around this idea of personalization of therapy based on biomarkers. Understanding the cancer genome now has a direct impact for our patients. When patients are diagnosed with advanced disease, I think all of these studies point to the fact that we need to have adequate characterization of the tumor. So it's no longer okay to say my patient has non-small cell lung cancer, which is the most common kind of lung cancer, it's really incumbent upon the oncologist, and pathologist, and pulmonologist, and surgeon to come together and further define whether or not there are particular mutations that would serve as good targets for drugs, or whether this is an inflamed tumor and may be best treated with immunotherapy.

When someone's diagnosed with lung cancer, I know it's often difficult for a patient, or family member, to first meet the oncologist and say yes, we have this diagnosis, but I'm waiting for additional tests. But that time that it takes to do this testing—and it's very complex, we look at anywhere from 3, at the very minimum, to almost 1,000 genes at my institution's program—in which we try to match particular drugs with therapies. And the reason we do this is because in about 30 or 40 percent of patients with non-small cell lung cancer that's non-squamous, the most common kind, we're able to find an easily druggable target. So we find EGFR and ALK and ROS1, and so we've got updates on all of those targets at ASCO.

But this year there was really a lot of excitement about a new target called the RET fusion protein and when 2 chromosomes sort of flip-flop and form a protein that causes this cancer to grow. Now this is uncommon, and medically it affects about 1 to 2 percent of patients with lung cancer, but when you look at the enormous burden of lung cancer, that's thousands of patients a year.

What we found was that there's a really selective drug that targets this protein and can shut down the cancer cells and cause deep responses, so almost 80 percent of patients with significant reduction in their tumor and lung responses with an oral tablet that's very well-tolerated. The idea is that we need to absolutely try to do a biopsy, understand if there are multiple markers, and that list continues to grow for which there are druggable targets. And there was a lot of excitement about drugs that target genes such as the MET exon 14 oncogene, or something that's been very elusive for some time, the EGFR exon 20 mutations. These are single sort of base misreads in our DNA that causes cancer to grow, but if 1 patient has this target, and we're able to deliver a drug that causes patients to have nice responses and a return to wellness, I think that's great for all of us.

Often getting the right tissue is tough because sometimes we just don't have enough tissue. And, certainly, we've seen considerable progress with liquid biopsies in recent years, and there's been good concordance between blood-based biopsies as well as tissue, and so our field is rapidly evolving in ways that we can bring the best drugs to the best patients.

We're starting to do this with immunotherapy. There's a protein called PD-L1 which helps us assign appropriate therapy for patients. And so if someone has a high PD-L marker on their tumor, those patients may get immunotherapy alone with an expectation that they would have a nice response and durable disease control with good quality-of-life. So with effort to really characterize tumors, although it can be difficult when someone's first diagnosed to wait to get all these markers right, which is on the order of about 2 to 3 weeks, the downstream effects of characterizing the tissue and getting the right drugs to the right patients are really enormous because we are able to see patients that return to wellness.

Certainly this was an exciting meeting. And I think more and more we're seeing not only medical oncologists, but patients and patient advocates, understanding the importance of biopsies, and an incredible effort by industry, as well, to really make these assays and these tests more accessible to patients, and to make the turnaround times even faster, and to use less tissue to get the right answers. I'm optimistic that we'll continue to see this trend, and there will be more and more drugs that will be optimized for particular patients.

ASCO: Thank you Dr. Patel. If this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

To learn more about all of the science presented at the 2018 ASCO Annual Meeting, visit www.cancer.net/ascoannualmeeting. If you have questions about whether new research may affect your care, be sure to talk with your doctor.

Cancer.Net is supported by ASCO’s Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

Improving Communication Between Patients and Health Care Providers, with Timothy Gilligan, MD, FASCO, and Liz Salmi

mardi 14 août 2018Duration 20:12

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ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer.

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. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

In today’s podcast, Dr. Timothy Gilligan and Liz Salmi will discuss their article “Patient-Clinician Communication Is a Joint Creation: Working Together Toward Well-Being,” from the 2018 ASCO Educational Book. They cover several ways people with cancer and members of their health care team can work together in order to improve their communication, including a study on sharing clinical notes with patients, a recent guideline from ASCO on physician-patient communication, ways to address religion and spirituality, and tips for patients.

Dr. Gilligan is an Associate Professor and Medical Oncologist at the Cleveland Clinic Taussig Cancer Center. Ms. Salmi is a brain tumor survivor, and Senior Strategist in Outreach and Communications for OpenNotes.

Published annually, the Educational Book is a collection of articles written by ASCO Annual Meeting speakers and oncology experts. Each volume highlights the most compelling research and developments across the multidisciplinary fields of oncology.

ASCO would like to thank Dr. Gilligan and Ms. Salmi for discussing this topic.

Dr. Gilligan: Hello, my name is Dr. Timothy Gilligan from the Cleveland Clinic. I'm joined today by Liz Salmi of OpenNotes and the Beth Israel Deaconess Medical Center. In this podcast, we will be sharing some key points from our 2018 ASCO Educational Book article titled “Patient-Clinician Communication Is a Joint Creation: Working Together Toward Well-Being.” I would also note that Dr. Andrea Enzinger from Dana-Farber was an author on that.

So, Liz, we were going to start with talking about your piece on this, your work with OpenNotes. And for those who haven't heard of this, the idea is making progress notes openly available to patients so they can read the progress notes about their medical care. Can you talk a little bit more about what OpenNotes is and what's at stake here?

Liz Salmi: Sure. Absolutely. Thanks for that intro. And I just want to say my role at OpenNotes—I do outreach and communication work, but, also, I think it's important for the audience to know that I am also a patient. I'm a person living with a malignant brain tumor or brain cancer. And I'm now a 10-year survivor, but I'm still living with active disease. So what I'm talking about today is not just part of my job, but it's also very personal to me. And so what you just kind of gave me a lead-in on, is explaining what OpenNotes is, but I do want to repeat a little bit about that. So OpenNotes is now a national movement that stems from real medical research, and it's a movement dedicated to making healthcare more open and transparent by giving people—or patients—access to their doctors' notes via existing secure online patient portals.

And when I say that, I want to make it clear that OpenNotes is not a product, or it's not a piece of software. It's more of just a concept of let's give patients full access to their medical records. And when we talk about OpenNotes, a lot of patients will say, "Well, what is a doctor's note?" Right now, I, as a person, can login to my digital online portal to email with my doctor, or, say, set up appointments, or order prescription refills. And sometimes, after a visit I can see a visit summary of a little bit of what transpired at my visit with my doctor. But what I don't see is my clinical notes.

Now, clinical notes, a lot of people and patients don't realize that after every clinical visit with a doctor, they go back to their office and write up these really detailed notes of everything that transpired during the visit. But most patients, about 93% of the US population, don't have access to this information. And it's a bummer because that information is so detailed. And as a person living with cancer, I'm kind of dealing with something that's emotional and overwhelming, and most people can't remember everything that their doctor says. And most doctors keep track of all of this in their clinical notes.

And OpenNotes, as a research project, was looking into what would happen if we gave people or patients easy access to those clinical notes that the doctors write. Would they understand those notes? Would they get some sort of benefit or value out of it? What would doctors think about that? And so I want to talk about what that original study is, and I'll hopefully try to do it quickly. But OpenNotes started as this research project. It was conducted in 2010, the first project, and it has now been replicated at multiple sites around the country. The original research was done with over 100 primary care doctors and 20,000 patients. And we tested this concept of sharing notes at 3 sites, at the Beth Israel Deaconess Medical Center in Boston, at Geisinger Health in Pennsylvania, and at Harborview Medical Center in Seattle.

And at the beginning of the project, they asked all the clinicians who'd be sharing their notes, "What do you think's going to happen?" And the doctors thought, "Gosh, we write these notes at such a high level because it's a communications tool with our other colleagues. And we don't think our patients are going to really understand what we're writing. And we're also concerned that patients might be afraid of what they read because there's all kinds of stuff we capture in there." And they also surveyed those patients. Before they received their notes, they surveyed them and said, "What do you think's going to happen? You're going to now read your notes for the next year. What do you think?" And patients, even people like me, were like, "I don't know what to expect. I've never seen this type of information before."

So fast-forward to a year later, and what they found was that during that year about 80% of patients read a note, and 75% of patients reported benefits. They felt like, "Wow, if I can read my doctor's notes, I feel more engaged in my care. I better understand why certain medications were prescribed to me. I felt like I had more control over my care." Sharing the notes improved the doctor-patient relationship. 99% of patients felt better or the same after reading just one of their doctor's notes. They felt they could trust their doctors more. And, just like regular people, sometimes doctors make mistakes. And sometimes those mistakes would transfer to their clinical notes, and patients, when they're reading those notes, were able to point out errors. For example, the doctor might write, "There's a problem with your left knee." And the patient will say, "Actually, I was talking about my right knee." So there was this opportunity for a little bit of quality control.

Dr. Gilligan: Well, thank you. So you've outlined, obviously, some of the benefits to patients in terms of direct access to information, the opportunity to correct mistakes, the chance to feel more empowered. I'm curious. Often, we hear from clinicians fears that this is going to generate a lot more phone calls or problems, or patients will get upset. Can you talk just a little bit more about what the research has shown in terms of what has actually happened when this has been turned on, so to speak?

Liz Salmi: Absolutely. So we've learned a lot. They're concerned that by sharing their notes, it's going to increase that doctor or other clinician's workflow, meaning if a patient reads a note and anything about it is unclear, or maybe there's a word and phrase they don't know, it's going to trigger an email or a phone call back to the doctor. So mainly, the concern is workflow. And we've seen—and it continues to show—that workflow does not increase. W

hy is that? Well, often, a patient will go to a visit, leave that doctor's visit, and then later go, "Oh, my gosh. I can't remember what my doctor said." If they don't have access to their notes, that triggers an email or maybe a phone call saying, "Oh, hey, Doc. I can't remember. Did you tell me to do this or that?" or, "How many times am I supposed to take this medication?" or, "How many exercises do I need to do each week?" or, "What was that thing you said?" With OpenNotes, patients can actually go back to the doctor's notes, the exact record of that interaction, and refer to the note itself. So that decreases the need for another email or another phone call.

Occasionally, a patient might read a note and have a question that the note triggers. So then they might follow up with a question through email or a phone call. So the 2 kind of cancel each other out, and, overall, you don't see an increase in workflow.

Also, they’re worries that most doctors have in advance of sharing notes. "Oh, my gosh.  I think my patient is going to read what I write, and they're going to get stressed out by it." But that never happens. And what is written in a medical record and in a note is what the doctor actually says to the patient. So there shouldn't be any new information, necessarily, in the note. An interesting thing to think about is that after that original study, all the doctors who shared their notes after that entire year were allowed to stop sharing their notes, but not a single 1 did. They were like, "Oh. This is working out for me. My patients seem to like it. So I'll keep going."

Dr. Gilligan: So I want to use that as a segue because we have two other subjects we need to cover in this podcast. Both in the article and in the session we did, we talked about the new ASCO patient-clinician communication guidelines, the first guideline that's been published. And that was published late 2017.

The guideline was broken down into 9 key areas that we thought were important. One was just core communication skills. How do you have the conversation in a better way?

One thing that's often unappreciated is that a lot of Americans have low health literacy. They have low numeracy. If we say to a patient, "There's a 30% chance of this or that," that may sound very obvious to us what it means, but it often is misinterpreted. And even lay persons, what we might consider average or normal numeracy or literacy, don't take in the numbers they get from healthcare professionals as fluently as they think they do, and there are better and worse ways that have been studied of doing that, and we talk about that.

Cost of care is a new issue. Bankruptcy from healthcare is a large problem in this country. There's a lot of unaffordable drugs out there, so how to talk about that is an issue that comes up in it.

Underserved population is a concern that we address, whether it's racial or ethnic minorities or other underserved populations. The LGBT community and their healthcare needs is increasingly recognized, and ways in which they encounter challenges in the healthcare setting a problem, so we talk about that.

And then lastly, the issue of how do we train people to get better? There's been a lot of research in how people improve in communication, and I think the big take home from that is that communication is a motor skill. It's like learning how to play a sport or a musical instrument, and the way people get better at it is by practicing it and then getting feedback so that they can improve.

And then the last piece that I really wanted to get your thoughts about was how do we talk about spirituality for patients with patients? We know that from studies of patients and surveys that the majority of patients think spirituality, whether or not that's formal religion, but spirituality in general, is important to them in coping with serious illness, and yet it's something that many providers feel unprepared or unskilled at in terms of bringing up. So in a sense, this links in with the former topic of key communication skills. I'm curious your thoughts, as a patient, what you think about the issue of spirituality and how it can be helpful to patients going through a difficult time.

Liz Salmi: Yeah, no, absolutely. And thanks for clarifying. There's formal religion and then there's just kind of general spirituality, kind of a vague aspect or a way of looking at things. And, I think, as a person who-- I don't attend church, but I do think about how I view my place in the world and as that relates to my cancer experience is they kind of go hand-in-hand.

And when I was first diagnosed, realized I had a brain tumor, and then I had a brain surgery, and I'm laying in the hospital 24 hours later, and a chaplain walked into the room and introduced himself and said, "Hey, I'm the hospital chaplain. And I just want to let you know that I'm here to talk to you." They are basically offering their support. But as a new patient and someone who's never been in the hospital before, I had no idea what the role of the chaplain was. And I told the person. I was like, "Yeah, I don't want to talk to you right now. What are you doing here?"

And they also scared me. The presence of a chaplain, I had only seen from TV that if a religious person came into a hospital room it meant somebody was dying. And I was like, "I just had brain surgery 24 hours ago. They're sending in a religious person to see me. Does that mean I'm dying?" So it freaked me out, and I told the person, "No, I don't want to see you. Please leave." And then when the nurse came in to check on me, I said, "What was that all about?" and the nurse says, "Oh, if you don't want a chaplain to come see you, I can make a note to not have them come see you again." I said, "Yeah, please do that."

So, actually, in my medical record, someone made a note in my inpatient notes, "Patient refuses chaplaincy services." And it wasn't until 2 years ago, so like 8 years after diagnosis and that first brain surgery that I learned a chaplain is non-denominational. They're there just talking about psychosocial, spiritual issues, that it has nothing to do with a particular religion at all. They're just there to help. And I think it's a bummer and a disservice that I didn't find out until eight years later when, really, I probably could have benefited from having someone to talk to from that perspective.

Dr. Gilligan: I think the promise here is that if we feel confident that we have the tools to do this, and we know how to have the conversations, and then we start having them, we'll be taking better care of our patients because they're telling us in surveys over and over again that this is important to them, and it would help them if they could talk about it. But it has to be done in a skilled way. And as your story, Liz, tells, if it's not done that way, then it can be unhelpful. It reminds me of Rana Awdish in her book In Shock talks about story where she wakes up in the ICU, and she's getting last rites. And that's not really the way you want to be introduced to a priest [laughter].

Liz Salmi: No way. That's wild.

Dr. Gilligan: It was kind of shocking to her at the time. Obviously, she survived to write about it, thank God.

Liz Salmi:  Well, you talk about these communication guidelines, which are for doctors to help them better understand how to communicate well with patients, but I was just curious if you have a couple tips for the listeners who, mainly, are patients for this podcast. What can patients do to help ensure smooth communication with our healthcare team? Do you have any tips for us if we want to kind of take control of situation a little bit?

Dr. Gilligan: Yeah, no, that's a great question. So 1 of the things I find interesting about that is that in the early research on the impact of communication on patient medical outcomes, it was documented very early that outcomes in managing high blood pressure, managing diabetes, other hard medical outcomes, not the more patient-satisfaction, softer stuff-- that hard outcomes improved if you either taught clinicians to communicate better or taught patients to communicate better. Either one has a positive impact on healthcare, so it's very appropriate to ask. The reason we focus on training clinicians is there are many fewer clinicians than there are patients out there. Training all the patients in the world would be a lot of people to train.

I think the most important thing is to come organized, to have it very clear what your priorities are, and what you're hoping to accomplish, and to try to lay that out early in the appointment. And it's helpful for us clinicians to know, but it's also helpful to advocate for yourself if you come in with a clear sense of what your goals are and what you're hoping to get out of the encounter.

I think the other thing I would say is it's really helpful to bring someone with you. I think if I'm ever in the hospital, I would want a family member there. And if I ever have a family member in the hospital, I'm going to be there, too, because in the modern healthcare system you need to advocate for yourself. And so I think being prepared and organized is one way you can advocate for yourself. Bringing someone with you can help, as well.

The last thing I would say is the model of communication skills that we teach is really built around building stronger relationships between clinicians and patients. And I think that, on both sides, it's a 2-way street, that relationship. If we both pay attention to the fact that we will work together much more effectively if we have a strong relationship, then we can try to communicate with each other in a way that helps build that up.

Illness is stressful. People get upset. They get angry, and all that is natural. But the more we can remember that, in the end, we're on the same team, we're kind of rolling the same direction. I usually find myself saying this to clinicians to try to avoid getting into unnecessary conflict with patients. But I think also, too, on the patient side. So those would be the 3 things I would really think about: being organized, bringing a family member with you when possible—I realize it's not always possible—and then paying attention to the nature of the relationship and attending to the relationship, not just the work that you're trying to get done. There's certainly more I could say, but it's a big subject.

Liz Salmi: Yeah, no, absolutely. And thank you for that. It was really helpful. I know, from an OpenNotes perspective, we often realize that access to information also helps ensure smooth communication. And when doctors and patients are on the same page and able to look at some of the same information, a patient's level of understanding increases. And it helps us make better decisions overall.

Dr. Gilligan: I agree, 1 of the things I like about giving patients more access to information is 1 of the things I, in a sense, challenge patients to do is to take more ownership over their own care. They should know what medications they're on, and they should know why they're on them, and they should know why they take them. I don't say that in a critical sense, but just if it's me, and someone has me on medication, I want to know why, and I want to know which drugs I'm taking. And keeping track of that, I think, taking more ownership over that, and really knowing your medical history to the best extent that you can helps you get better care in our system.

Liz Salmi: Yeah. Absolutely. High five on that one.

Dr. Gilligan: Well, it's been great talking to you again, and--

Liz Salmi: Same. Yeah, and thank you. It was a pleasure to get to write this article with you in the ASCO Educational Book, which, I believe, anyone can read at ASCO.org/edbook.

Dr. Gilligan: That's right. That's right. So look it up, take a look. We hope that you enjoy it. Thank you for listening to our podcast.

ASCO: Thank you Dr. Gilligan and Ms. Salmi. Please visit ASCO.org/edbook to read the full article. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO’s Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

[music]

2018 ASCO Annual Meeting Research Round Up: Side Effects, Head and Neck Cancer, Breast Cancer, and Melanoma

jeudi 2 août 2018Duration 24:22

The ASCO Annual Meeting brings together physicians, researchers, patient advocates, and other health care professionals to discuss the latest in cancer care. The research presented at this meeting frequently leads to treatment advances and new ways to improve the quality of life for people with cancer. In today’s podcast, Cancer.Net Associate Editors share their thoughts on the most exciting and practice-changing news to come out of the 2018 ASCO Annual Meeting.

Patient-Centered Care, with Meg Gaines, JD, LLM

jeudi 19 juillet 2018Duration 14:44

This podcast features an interview with Martha "Meg" Gaines, Distinguished Clinical Professor of Law at the University of Wisconsin-Madison and Director of the Center for Patient Partnerships. She shares her personal experience with cancer and explains how it led her to advocate for others with cancer and found the Center for Patient Partnerships. She also discusses patient-centered care, and shares tips for patient advocates.

2018 ASCO Annual Meeting Research Round Up: Brain Tumors, Sarcomas, Pancreatic Cancer, Liver Cancer, and Kidney Cancer

mardi 17 juillet 2018Duration 30:27

The ASCO Annual Meeting brings together physicians, researchers, patient advocates, and other health care professionals to discuss the latest in cancer care. The research presented at this meeting frequently leads to treatment advances and new ways to improve the quality of life for people with cancer. In today’s podcast, Cancer.Net Associate Editors share their thoughts on the most exiting and practice-changing news to come out of the 2018 ASCO Annual Meeting.

Assessing and Managing Care for Older Adults, with Arti Hurria, MD, and William Dale, MD, PhD

lundi 21 mai 2018Duration 17:17

Approximately 70% of people diagnosed with cancer are 65 or older, and often older adults with cancer have different needs and concerns than young adults or children. In this podcast, we will discuss new recommendations from ASCO about how doctors can assess older adults in order to ensure they get the care they need.

This podcast will be led by Dr. Arti Hurria and Dr. William Dale, two co-chairs of the expert panel that produced these recommendations.

How to Safely Handle and Dispose of Medications, with Paul Celano, MD

mardi 8 mai 2018Duration 12:55

In this podcast, Dr. Paul Celano discusses what patients should know when taking medication for cancer treatment, including tips for safely storing the medication, special considerations for oral chemotherapy and opioids, as well as resources to help dispose of unneeded or expired medications.


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