Note: This editorial accompanies The American Journal of Bioethics, Volume 23, Issue 11 (2023).
By the time this essay is published, it will be a matter of weeks before doctors and nurse practitioners in Canada can legally end the lives (by medical assistance in dying, or MAID) of non-dying persons whose sole underlying medical condition is a mental disorder. As a psychiatrist and a bioethicist, I have been studying the practice of psychiatric euthanasia, as well as the debate surrounding it, for some years.
MAID for mental illness deserves special scrutiny. Controlling how one dies at the end of one’s life is different from deciding whether to live at all which is the question for almost all cases of MAID for mental illness. They involve different types of patients: end of life MAID involves older men and women (about equal proportions) from the more privileged, empowered (and control-oriented) slice of society. But that will not be the case in psychiatric MAID. 70–80% of persons requesting and receiving psychiatric MAID are women. Mental illness can sometimes impair a patient’s capacity, and almost always colors their evaluative perspective and preferences regarding the future. Even for the paradigm diagnosis of “treatment resistant depression,” the best long term studies show that the majority enter remission (despite the misleading “treatment resistant” label), but we are unable to predict who will (or will not) get better. And we know that in both the US and Canada, access to mental health care is not adequate. Many Americans are uninsured, and the most common reason for not receiving mental health services is financial. In Canada only half of people with depression receive “minimally adequate” treatment. Finally, outside the rarefied circle of policy elites, the concept of MAID for mental illness is supported by only 3 of 10 Canadians.
Despite all this, Canada is poised to legalize psychiatric MAID by using the current eligibility criteria which, as explained below, are especially problematic for this population. Given this impending legalization, what can we learn from the exchange between Pullman and his commentators?
Pullman’s Article in Context
Pullman’s article, using the slippery slope metaphor to explain the rapidly increasing numbers of MAID in Canada, has evoked strong reactions: “bias,” “fearmongering,” “absurd,” and not just wrong but “Really wrong.” But there is no need, for my purposes, to engage in the dispute about the applicability of the metaphor. The focus should instead be on evaluating the specific elements of how MAID is practiced in Canada. In regard to those elements of concern, it is important to understand that Pullman’s is not a solitary voice. There have been a steady flow of writings documenting a myriad of worrisome (i.e., insufficient safeguards and loose eligibility criteria) aspects of the current practice, including articles and media reports, and an edited volume with over 40 authors.
Two points are notable about this trend. First, like Pullman’s article, they are not primarily arguments against assisted dying per se. They are critiques of specific components of MAID as practiced in Canada. As Bill Gardner (a Canadian psychologist and medical school professor) reminds his readers in one of the most informative and thoughtful personal reflections (Gardner is a cancer patient) on Canadian MAID, even those who argue in favor of assisted dying have acknowledged that “‘if there is no way of constraining the practice so as to provide adequate protections for the poor and the weak… then all bets are off’”. One can passionately believe that MAID is the right thing in some circumstances and yet harbor strong criticisms about actual MAID regimes.
Second, the worry about the Canadian situation is widely shared, even if only a few speak up, across the ideological spectrum4 and among those who do and do not provide MAID. Take Madeline Li, a psycho-oncologist and scientist at the University of Toronto who published the first empirical study of Canadian MAID in the New England Journal of Medicine. As the head of Toronto’s University Health Network MAID program, she has overseen “hundreds of cases” of MAID and has “personally provided MAID numerous times”. She has been an active member and a leader within the Canadian Association of MAID Assessors and Providers—an organization that I have criticized for its ideological excesses—since its inception in 2017. She is one of the three co-principals on the HealthCanada’s CAN$3.3 million award to CAMAP to develop and evaluate a standardized MAID training program and is its Scientific Lead (https://camapcanada.ca/curriculum/).
Li publicly points to the flaws that increasingly “distress” her about the Canadian MAID system. She worries about an evaluation system that does not require, much less encourage, use of clinical judgment and indeed permits MAID even when it involves acting “against medical practice standards”. She is concerned about the loose interpretation of the law, for instance, where “reasonably foreseeable death” is taken to mean months to several years. She believes it is wrong to permit MAID when the request for it is driven not primarily by a person’s medical condition but instead by the suffering exacerbated by that person’s inability to “afford housing” or “medication,” or by “other structural vulnerabilities”. Yet she “has no doubt in [her] mind that when [such patients apply for MAID] they could be found eligible and receive it.” (This is of course true. There are indeed patients who state that they would rather live but feel forced to choose MAID under such circumstances). She finds it “maddening” that the law is “missing crucial safeguards for patients,” especially for persons without a terminal illness who request MAID, and she argues against the legalization of MAID for mental illness and indeed against MAID outside the end of life context.
The reader will notice that there is substantive—but not, to be clear, complete–overlap between Li’s concerns and the concerns raised by Pullman and others in the publications cited above (in this issue, see especially Lemmens’ commentary). It seems a bit too quick and easy to use “bias,” “fearmongering,” “absurd” and “really wrong” to describe the concerns expressed by Li and others.
What Does Society Owe Its Marginalized, Vulnerable Citizens?
For our purposes, let’s focus on the fact that Canadian MAID law does not require that MAID be a last resort option. This means one can qualify for MAID even if one refuses an effective or even curative treatment. It may be that few would refuse a curative treatment for cancer and ask for MAID instead. But, relevant to our discussion, it is not unusual for psychiatric patients in the grip of their illness (“nothing will work”) to refuse indicated treatments. In the Netherlands, in contrast, a physician must find ineligible a patient refusing a clearly indicated “reasonable alternative” as MAID can only be granted as a last resort.
Furthermore, the Canadian law allows MAID when, due to failures of the social safety net, a person lacks access to even standard of care interventions due to financial reasons (I have read more than a couple of hundred Dutch euthanasia case reports, and I cannot recall a single instance in which affordability of care came into any of the narratives).
It is somewhat surprising therefore that commentaries critical of Pullman hardly engage with the problem of MAID when the person chooses it instead of an effective treatment option, or as a forced second option due to lack of access to daily necessities, standard treatments or supports. After all, arguing against such a policy does not imply arguing against legalization of MAID per se, only against an extreme form of it.
One commentary attempts to downplay the issue by saying the worry is based on anecdotal cases that should be “investigated and avoided”. But such a response curiously misunderstand the point. The point is that these cases are a feature and not a bug of the current Canadian system, as reflected in the tepid responses they usually elicit from the government. The law explicitly makes room for the practice and the regulators say nothing to discourage it. To see how odd this is, consider a situation where a doctor is faced with a situation of a patient who is technically eligible for MAID, but the doctor believes there are other medical options that will be effective and should be tried first. This doctor’s belief is not some personal religious quirk or an expression of paternalism; the doctor is merely following professional standards of medical practice. One might think that the lawmakers would have anticipated these situations that, regardless of one’s views on MAID, create a clinical dilemma for the doctor. So it is baffling that the very recent Model Practice Standard for Medical Assistance in Dying (MAID) published on HealthCanada’s website does not even address the problem. Instead, as Lemmens points out, the HealthCanada documents imply that declining to perform MAID in such situations can only be a conscientious objection. Since some provincial regulations require effective referral if a doctor declines to perform MAID, the state in effect is requiring a doctor to ensure that a patient receive what the doctor believes is a medically contraindicated procedure. Such are the internal contradictions of turning a court-invented alleged right into a medical treatment.
To be fair, another commentary does look at the issue squarely. It argues that “practically speaking many individuals in these situations will never have access to help or resources that might sufficiently alleviate their suffering.” Then they argue that since “[these patients] see suicide as their only way out,” (“only” here is of course conditional upon lack of needed resources), the authors recommend MAID as a dignified alternative to suicide. Others have taken a similar position. In effect, they assume that this form of injustice is immutable and say it is better to provide a painless death for these folks (the patient’s second choice) than to insist on ensuring that they actually have access to care (the patients’ first choice). Perhaps such a toughminded stance would make more sense if what these patients are seeking were some extraordinary or expensive treatment. But that is not what these patient need, or are asking for. Accepting an unjust status quo is one thing; perpetuating it even at the expense of performing (indeed, advocating for) a highly problematic moral act—an act which the requestor has made clear is a forced option—is another. Does a belief in MAID entail such a devaluing attitude toward the lives of these vulnerable persons?
What Are the Options?
For those who feel at least some unease about these cases of MAID, I would suggest that there are a couple of possible ways that interlocutors from disparate standpoints might find some minimal common ground. One potential option would be to keep MAID within the medical realm, but revise the laws to make it a last resort option based on objective medical irremediability. Given that the main argument of proponents of the current law is the compelling need to address suffering, they should support expanded, more equitable health policies to protect this vulnerable group. It would be a shame to waste an opportunity to promote a needed policy change. Assuming that pro-access commentators on MAID care about equity in health care and in decreasing health disparities, especially in the tragic life or death circumstances of MAID, it would seem they’ve been handed an opportunity to mobilize public support for better policies.
A welcome corollary of increasing resources to target those at risk of seeking psychiatric MAID is that the system will prioritize persons whose suffering is often stigmatized and marginalized even within the mental healthcare system. I mean of course those with personality disorders with comorbid psychiatric and other diagnoses who have frequent thoughts of death. Such patients are overwhelmingly women and often have had traumatic early life experiences. Most mental health care systems could do a lot better in caring for this group of highly vulnerable women.
But perhaps Canadian values will ultimately be deemed not consistent with providing such resources to this vulnerable population. Then one could instead build on the recognition that MAID for poverty-induced exacerbation of medical conditions is not really a medical act but a socio-political one. This should be acknowledged in policy, and such cases—that is, if Canadians’ values support maintaining assistance in dying even under conditions of injustice—could be moved out of the medical system. Doctors and nurses could still be involved, lending their skills instrumentally (akin to the current Swiss practice which is managed by laypersons, not doctors), rather than pretending that they are delivering some new medical treatment (as CAMAP claims MAID is). After all, some physicians have called for a “radical reframing” of the assisted dying debate by arguing against its medicalization on principle.
The most obvious objection to this non-medical parallel assistance in dying (AID) system is that if the Canadian government is not willing to provide the needed resources for some people to go on living in the first place, why would it devote the resources to run a parallel system of AID that is sufficiently accessible and yet also safe? Contrary to a recent suggestion that taking AID out of the medical sphere would increase access, it is highly likely that in Canada access to such cases, even if legal, would become much more restricted. Why? Because the health care system is a highly efficient AID delivery mechanism. This means that if the Canadian system wishes to maintain its posture of favoring access over safeguards, considerable resources will be needed to make that access possible, which in turn leads to the thought… well, one might think that the resources would be better spent on option one above. The virtue of imagining this move to a non-medical parallel AID system is that it makes clear that the underlying social-political problem should be the central and explicit basis for policy, rather than pretending that it is a medical problem to solve. The true implications, if not the true intent, of the current MAID law are thrown into clear relief.
The Hegemony of Privilege
In closing, it is worth reflecting on another internal contradiction within the Canadian MAID system. In the recent “Advice to the Professions” regarding MAID on the HealthCanada website, one finds the following in reference to the dilemma created by the current law:
On the one hand, providing MAID might lead the practitioner to believe they are complicit with societal failures. On the other, not providing MAID to a person who wishes to access it and fulfills the eligibility criteria might lead the practitioner to believe they are forcing the requester to live in a state of intolerable suffering.
Aside from the curious language (“might lead the practitioners to believe”?) that seems designed to put ideas into one’s head without taking responsibility for it, the idea that a professional would be “forcing” someone to suffer intolerably—and by implication, being responsible for it—by declining to provide MAID obscures the real cause of “forcing” that suffering, i.e., a societal failure. But there’s more.
Consider further that in the 2015 Carter decision, part of the reasoning behind the ruling was that “the prohibition” against assisted death “deprived” Gloria Taylor of the “right to life.” How so? Because it had the effect of forcing some individuals to take their own lives prematurely, for fear that they would be incapable of doing so when they reached the point where suffering was intolerable.
So if a person would rather live longer but chooses not to because of some external factor (a prohibition on MAID in Carter; inequitable health funding laws in our discussion), then it can be said that that factor is “forcing” the person to forfeit a part of their life. But these “forcings” are treated differently in Canada: when a prohibition on MAID is the factor, then there is said to be a violation of a basic human right; but when a flawed MAID law and inequitable funding laws are the factors, then not only is there no violation of a human right, the government can even suggest—somewhat indirectly and artfully—that the real “forcing” at issue is the health professional inflicting intolerable suffering on the patient.
Some will object that the prohibition on MAID in Carter was different because it violated people’s freedom, so the solution was to just get rid of the law which restricted that freedom, whereas the solution for lack of resources is to mobilize societal resources to provide services. This strikes me as a disingenuous objection. What the vigorous intellectual exchange surrounding Pullman’s article shows—whether one prioritizes access or safeguards—is that those who favor access to MAID are precisely arguing for the necessity of devoting significant resources to provide a service. Legalizing MAID entails policy decisions not about staying out of people’s lives, but about devoting resources to provide a service to them. It just so happens that in Canada, they have prioritized MAID access over providing standard of care for, and prevention of premature deaths of, the poor. It is a matter of priorities.
In closing, it may be worth asking whether these priorities reflect a hegemony of privilege. The prohibition on MAID, when it was in effect, applied to everyone equally. It did not discriminate whether one was poor or wealthy, disabled or not, educated or not, privileged or not, or mentally ill or not. But the inequitable health funding policies and the flawed MAID law operate differently: they selectively target the poor and the weak.
Scott Y. H. Kim, MD, PhD is a Senior Investigator in the NIH Clinical Center Department of Bioethics. He is bioethicist-physician who studies both clinical and research ethics.
I thank Raymond De Vries for his comments on an earlier draft.
This work was supported by the NIH Intramural Research Program, CL010539.
The opinions expressed in this article are the author’s and do not represent the view of the NIH, DHHS, or the US government.