Physician assisted suicide and the economic impossibility of safeguarding
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Last Friday, the UK Parliament voted by a narrow margin to legalise physician-assisted suicide.
Since then, there has been much discussion of the possibility that the House of Lords could tighten up safeguarding for this bill, which has been criticised widely for lacking sufficient safeguards for people who are mentally ill, anorexic, diabetic, or simply socially isolated and therefore easily suggestible by doctors who, according to this law, will be allowed to raise the topic of suicide with patients who have not raised the issue first themselves.
In fact, Parliament explicitly rejected an amendment to prevent doctors from suggesting to patients that they may wish to end their lives, voting only to protect children from such suggestions. Similarly, although Parliament approved an amendment that prevented patients from being deemed terminal due to voluntary stopping of eating and drinking (VSED), this does not apply to anorexics, whose refusal of food is due to a mental health condition and therefore is arguably involuntary.
The erosion of safeguarding is not a matter of if, but of when. It is not a bug but a feature.
A number of people who have concerns about the bill are hopeful that with the correct amendments in the House of Lords, it will be made fit for purpose and add the safeguards that are currently lacking. Although safeguards are obviously to be welcomed, I believe that such people are failing to recognise a more fundamental problem with this proposal, which comes down to economics. In the end, whatever safeguards are officially agreed, as long as this matter is framed in terms of a “right to die”, over time, practical constraints will lead to an erosion of safeguards as has occurred in places such as Australia and Canada. The erosion of safeguarding is not a matter of if, but of when. It is not a bug but a feature.
For those who are in favour of physician-assisted suicide, the discussion about this legislation has been framed in terms of patient choice and the “right to die”. How dare I restrict the choice of somebody else who has freely consented to ending their life? It's their life, not mine. Their body. Their choice.
For those of us who have followed the child gender transition debacle of recent years, this conversation is oddly familiar. It is no coincidence that people such as Kathleen Stock and Fred Sargeant who are critical of physician-assisted gender transition, have also been concerned about physician-assisted suicide. In gender critical circles, we know to be careful when people talk about bodily autonomy and choice; we know that the issues of safeguarding or gatekeeping or autonomy are never as simple as people might think.
How will the NHS deal with this backlog of people demanding to die, particularly if the service is framed in terms of people having a right to die?
Already in recent days, health secretary Wes Streeting has raised concerns about the cost of implementing physician-assisted suicide, possibly topping £15,000 per patient. A whole new service needs to be set up in the NHS to provide this procedure. Personnel need to be trained to assess requests from patients and to determine which patients should be allowed to die, and which should be told “no, not you”. This will also divert resources away from other treatments, possibly away from the important palliative care, provision of which is known already to be inadequate. Adequate palliative care is crucial if patients are to have a real choice between ending their lives and having a dignified death free of excessive pain.
Whether or not the House of Lords strengthens safeguards, we know that implementing this legislation will be difficult and costly. The greater the safeguards that may be added, the greater this cost, as savings are generated only after sick people actually do die. We have already seen that practical constraints (economics) have led to changes in the safeguarding process. A shortage of available high court judges forced the bill’s proponents to remove the safeguard that such a person would need to approve applications, in favour of a more practical panel without a person of such high legal qualifications.
We must ask: What will happen in a few years’ time, when there is a backlog of say hundreds or thousands of patients who have requested assisted suicide? What will we do when the safeguards necessary to make sure that their suicide has not occurred under duress or due to inappropriate factors such as mental illness — when these safeguards lead to unacceptable delays because systems are overwhelmed. How will the NHS deal with this backlog of people demanding to die, particularly if the service is framed in terms of people having a right to die?
Imagine a few years hence, if careful safeguarding and gatekeeping is in place, if the process has not devolved into the informed consent model in which a patient’s “right to die” is simply affirmed and they are pushed down the pipeline towards death. Someone will be frustrated by the delays from “excessive gatekeeping” that interferes with their “right to die” and they will sue complaining that they are being coerced into remaining alive. If strong safeguards are kept in place, this lawsuit will happen (again, not a matter of if but of when). More likely, organisations such as Humanists UK will push for a reduction in safeguards to avoid such delays.
Those of us who have been following the issue of gender-affirmative care in medicine cannot help seeing the obvious parallel: the similarity to another story in which gatekeeping was eroded due to the reality of practical constraints or economics. Years ago, when Dutch doctors initially decided to begin to transition a small number of gender non-conforming children in order, theoretically, to provide them better cosmetic outcomes as fully transitioned adults, there were significant safeguards in place.
Let's leave aside the question about whether, in principle, we think that one should ever block the puberty of a child and medically transform a young person to look like the opposite sex. Leave aside that question for the moment and simply consider the matter of safeguarding. Leave aside for the moment the very valid criticisms of the Dutch protocol, which I know was severely flawed research. Nonetheless they did have safeguards in place. If you have followed the New York Times podcast, The Protocol, you will recall that one had to undergo several months or years of therapy. There was screening for all sorts of mental health problems that disqualified patients from puberty blockers or medical transition.
Thus the “gender-affirmative” care model began to view gatekeeping as a pejorative, something we should not do as we had a duty to affirm patients…
So what happened when American and British doctors saw what was happening in Holland and decided to bring these procedures back to their own countries to replicate them so that patients in their own countries could have access to this new apparently ground-breaking treatment protocol? Quickly, in both the UK and the US is, the number of children seeking “gender-affirmative care” far exceeded what clinics they could cope with following the Dutch model, because along with the patients they expected to see (those who had been gender nonconforming from a young age, mostly boys), there came a multitude of distressed adolescents (mostly girls) with no prior history of gender dysphoria. Thousands of patients built up on waiting lists, or in the case of the United States, patients sought treatment at hospitals hundreds of miles from their homes, and so they could not reasonably be expected to show up for months and months of appointments and therapy sessions (See NYT The Protocol, episode 3).
As a result, as explained in the NYT podcast, the process was changed. It was streamlined to get through the waiting lists. Months of therapy often turned into a single assessment. And thus we ended up with problems that far exceeded those from the Dutch protocol. Again, I am not saying that the Dutch protocol was itself a good process or defending that research, which is deeply flawed. But certainly, what happened in the USA and UK etc. was far, far worse. It became a free-for-all.
You will change the product to fit constraints just like any vendor of any product in a market economy. Therefore, if it is impractical, expensive or onerous, safeguarding gets cast aside.
Johanna Olson Kennedy explains on the Protocol (again episode 3) that she realised it actually made no sense to engage in these sorts of safeguarding / gatekeeping procedures in order to decide which patients should be getting gender-affirmative care and which should not. Gatekeeping did not work because, of course, doctors could not easily tell which patients should and should not be transitioned, and patients would simply change what they told doctors in order to get past gatekeepers, thus hiding other mental health problems. Again, this is a matter of economics, of practical constraints and incentives (people may not be honest with doctors if that does not get them what they want).
Olson Kennedy therefore decided that patients who wanted to transition should be allowed to transition, should be affirmed. Thus the “gender-affirmative” care model began to view gatekeeping as a pejorative, something we should not do as we had a duty to affirm patients and believe them when they claimed a gender identity. Transition was no longer a treatment which would be provided or not based on medical judgment by a trained professional. Rather, transition became purely the exercise of what was framed as “trans rights.”
You could say that this was an ideological development, but I'm going to look at this purely from an economic point of view, since I am trained as an economist. Set aside the culture wars, “woke”, queer theory, all of that. It was inevitable that this would happen. If the resources are not available to do the safeguarding that you would like to implement and you have a backlog of cases, then you will then adapt your product to fit the circumstances so that you can provide a service that satisfies your clients, patients, customers (whatever you wish to call them). You will change the product to fit constraints just like any vendor of any product in a market economy. Therefore, if it is impractical, expensive or onerous, safeguarding gets cast aside.
The better safeguarding functions, the more we will hear people criticizing the gatekeeping that prevents people from dying when they want to.
Of course, to avoid cognitive dissonance, you will then be attracted to an ideology that justifies your actions. Alternatively, jobs providing this care will attract ideologically compatible personnel — people whose mindset allows them to do this new job and still to sleep at night. Self-selection of compatibly minded people will inevitably lead to group think within these clinics. None of this requires any conspiracy, any neo-Marxist strategy to take over the Academy and inflict queer theory on students. This is a process driven by the economics. Ideology is a secondary result.
In short, I don't think that what happened in the States was in any way surprising. It's exactly what you would expect to happen because the only practical alternative to getting rid of all the safeguards would have been what's happening now in so many US States and countries, which is to halt provision of this service completely. You can't transition any children at all because we can't tell which patients should or should not be transitioning as children. Because the reality is that, at any reasonable cost, within realistic practical constraints, it is just not possible to put in place safeguarding or appropriate gatekeeping so that only the correct patients get the treatment. You either have a free for all or you stop doing it completely.
This brings us back to physician-assisted suicide in the UK. I predict that if this law gains royal assent, even if the House of Lords agrees extra safeguards, it will not actually make that much difference. Yes of course, it will help if safeguards are put in place. Some vulnerable patients can of course be protected from killing themselves and it is better if the law closes the anorexia loophole, the diabetes loophole, the doctor-suggestion loophole, etc. However, when it comes down to it, whatever safeguarding we do will be constrained not by what the law says those safeguards should be, but by the economics.
Safeguarding / gatekeeping will be constrained by the funds available to pay personnel on review panels, meaning quicker decisions by less qualified people. It will be constrained by the ability to train health workers for jobs implementing the service, and these new jobs in death-affirmative care will self-select for those who are ideologically committed to the right to die, just as clinicians in “gender-affirmative youth medicine” self-selected for those who believed in queer theory or had themselves transitioned or had supported the transition of a partner or child. We must expect that gatekeeping will not protect vulnerable patients. When this failure occurs, it will not be a surprise, but an economic inevitability of enshrining a “right to die” and to have this death provided by the NHS.
Initially, we may have a good service with careful decisions. Morally problematic, but perhaps analogous to the Dutch protocol. However, over the course of time, as the number of people seeking assistance for suicide increases, as the caseload and the backlog of cases builds up, as the systems in place to provide careful safeguarding become overwhelmed and more ideologues are attracted to the death-affirmative care profession, the death-provision procedure will be streamlined, and safeguarding will be reduced. The better safeguarding functions, the more we will hear people criticizing the gatekeeping that prevents people from dying when they want to: for example, discrimination against the disabled or the mentally ill who all have an equal right to die.
Doctors are paternalistic. They offer us treatments that evidence shows to be beneficial, not treatments we demand as our “right”. We are patients, not customers.
No matter what safeguards are put in place, the reality will be that these safeguards will not be adequate because they cannot be adequate because to put adequate safeguards in place will simply cost too much and place too many obstacles in front of those who see this as a right. Thus, people will find a way of rationalising why a more streamlined approach is consistent with the intention of parliament, or the law will be amended to solve practical difficulties — meaning to remove safeguards that are practically impossible to implement.
There will be lawsuits by patients affected by the delays that will force pragmatism by the NHS. And in the end, we will institute an easy pipeline towards death in the same way that there was, until recently, an easy pipeline in the United States towards gender transition of children. And as we found in the United States to do with child gender transition, the only way to actually stop the abuses of the system will be to abolish the service completely. Except in this case, it is unlikely that a reversal will occur. We will have become efficient at killing off those who are an economic or medical drain on society. The economic cost of reversing this progress will be far too high.
There is a deeper lesson here. The fact is that there are some kinds of choices, medical decisions, medical procedures, where theoretically we might say that some people should get them, but where we can't allow this to become normative medicine paid for by the state or by insurance, because we know that the reality is that the safeguards that one would need to put in place are actually impossible. There is no way to make the care widely available to your target group without catching all sorts of other people who may be harmed if this becomes normalised and paid for by institutions, particularly if this care is framed as a human right.
This is why it is fundamentally wrong to have physician-assisted suicide in the UK, provided by the NHS, framed in terms of a “right to die”. It cannot be done, and the reason is not because I don't think that it is morally justified for people to be able to end their lives if they so choose. This is not because I feel that I have a moral right to tell other people whether they ought to live or die. Rather, the reality is that if you try to put in place physician-assisted suicide based on a right to die, you will end up with exactly the same problem happening that happened with child gender transition. Because even if you believe that some children should be transitioned, (which I don't), there is no way to offer such a service without being swamped by patients who definitely should not be receiving it.
If a service is demand-led, you end up finding it impossible to safeguard patients and to distinguish between those who should be treated, and those who should not. You end up with an assembly line and a free-for-all and a lack of gatekeeping. It is a process driven by the economics, once it receives an initial ideological green light to begin.
Does this mean that it is impossible for there ever to be physician-assisted suicide provided to any patient with any health condition? What about people with terminal cancer, suffering intolerable pain in their final days or hours of life? Do we leave them to suffer in agony? I actually believe there may be a way to help such patients. The key is that any such assisted death must not be framed in the terms of the right to die, in the same way that medical alteration of sex development cannot be framed in terms of a “right to transition” — paid for by the NHS or insurance as the case may be.
This is because there is no “right” to have any particular kind of healthcare. We do not waltz into a doctors office and demand antibiotics because we feel we have an infection. We require a diagnosis, and if the treatment is appropriate, we get the penicillin. Otherwise, the doctor says no. Doctors are paternalistic. They offer us treatments that evidence shows to be beneficial, not treatments we demand as our “right”. We are patients, not customers. The failure to understand this basic fact lies at the root of the scandal that is gender-affirmative care.
Can doctors ever offer death as an option to patients? Possibly yes, but this would have to be offered like any other medical treatment. If there are particular medical circumstances (such as end stage cancer), where evidence shows that even with the best palliative care, a patient cannot control excruciating pain, so that the best treatment possible may be to increase morphine to deadly levels, one might be able to make a clinical argument to offer this. But this would be a very specific clinical judgment, and it is not about whether someone has the “right to die.” It is about caring for a patient who is dying, so that his or her death is less painful.
I think this scenario is what comes to mind for those who make the most emotive arguments for assisted dying. In that case, what a law could do is give authority to NICE to look into the possibility of hastened death being elected by patients with that particular health condition, in order to allow their death to be less agonizing.
But we cannot frame this in terms of the right to die. It’s not about a patient making a choice and then demanding that the NHS provides death to order, with the patient as consumer. Rather, we're talking here about doctors engaging in what effectively is a form of health care for a patient, where medical evidence indicates they may be better served if they are allowed to die sooner, and therefore they are given this as one treatment option.
Even here, the offer would be fraught with risk. This would entail legislation that would protect doctors from prosecution when they offer such help but only subject to enormous safeguards, similar to those proposed for the assisted suicide bill, but not framed in terms of a “right to die.” Moreover, if we are talking about just a small number of conditions for which there is solid medical evidence that palliative care alone cannot prevent an agonising death, we may find that the economics does not necessarily lead to an erosion of safeguarding. Even here, we would need to compare a hastened death to the best possible palliative care, so that patients are not effectively forced to choose death because they are not being provided for properly otherwise.
The key to understanding this is to avoid a misconception about informed consent: namely the mistaken notion that it is reasonable to offer death to patients if they have capacity to consent to that death. This is not how informed consent normally works in medicine. Rather, even where informed consent applies, doctors act paternalistically. They evaluate which treatments can help a patient, and then a patient must consent to treatment and has a right to refuse treatment. But patients do not have a right to demand treatments that doctors do not deem helpful. There is a right to say no, not a right to demand yes.
The problem we have with the so-called “right to die” is similar to what happened with gender-affirmative care. There, treatments were framed in terms of a right to transition as opposed to being framed in terms of evidence-based health care. And that's how we ended up in the mess we're in with a complete free-for-all with the elimination of safeguarding or gatekeeping because patients felt they had a right to the care whether or not there was any evidentiary basis for it.
The key here is to realise that, when given by healthcare providers, death is no more a right of patients than any other kind of healthcare a doctor could give. Doctors do not have a duty to give any patient any medical procedure, any outcome that the patient wants. They have a duty to give healthcare which is evidenced and sensible and also cost effective. When a particular kind of treatment becomes a “right”, we throw out of the window the most important question: whether the treatment does or does not benefit patients, based on evidence. Because if it is truly a right, then it is equally a right for a patient dying in agony of cancer, and for a nineteen year-old with anorexia who has just given up on life and wants doctors to end it. This way of framing medicine is a very, very dangerous, dangerous path to take.
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