MAID in Canada at the Intersection of Poverty and Disability

On June 16, 2022, in the margins of a meeting of the UN Conference of States Parties to the Convention on the Rights of Persons with Disabilities, where Windsor Law colleague Laverne Jacobs was elected as a first ever Canadian member of the CRPD Committee, Canadian disability rights organizations organized a session to call the world’s attention to troubling developments with our Medical Assistance in Dying [MAID] Regime. One of the concrete examples that featured prominently was the case of  a women living in poverty who struggled with severe chemical sensitivity and had desperately been trying to obtain social housing adjusted to her medical needs. CTV reported how Toronto physicians ended her life with MAID, at her request. CTV also reported on the case of another woman in a similar situation who was approved for MAID, following a MAID assessment which in her words “focused [little] on what services I had, what I needed to achieve some level of normal. Nothing was offered in terms of support.” Fortunately, private charitable fundraising permitted her to move into temporary adjusted housing and to postpone the ‘MAID procedure’. Finally, a third report of June 2022 revealed how a woman in her 30s, suffering from a rare but not terminal condition, applied to the British Columbia Fraser Health Authority for MAID in the hope it would lead to more medical or social supports. While she was offered MAID, no additional support of specialized health care was allegedly made available or promised.

These cases, enabled as a result of recent changes to Canada’s MAID law, which now allows MAID for disabled persons even when their death is not "reasonable foreseeable", add to reports of controversial applications preceding this expansion. One of the troubling cases was that of Alan Nichols (see report with commentaries by several psychiatrist on his MAID death here; commentaries can be found in side bar on the left). Nichols was a 61 year man with cognitive disability, who was hospitalized following a wellness check. He was initially diagnosed as suicidal, but did not appear to have any illness that made his death 'reasonably foreseeable'. Yet he received MAID five weeks later. The family only learned about the upcoming ending of life 3 days before it occurred, and tried in vain to convince him, as well as the health care providers and the institution, to cancel or at least delay the procedure. They recently learned that the official MAID request stated 'hearing loss' as 'supportive diagnosis' for his request. Nichols had a cochlear implant, which he refused to use when his family tried to communicate with him in an attempt to convince him to withdraw or suspend his request to be killed. 

In any human-rights and social-justice committed society, these reports should evoke broad outrage or at least much commentary, a demand for inquiry, and hopefully a temporary halt to the practice. Not so in today’s Canada. In contrast to CTV, most mainstream media outlets have remained silent; even the normally socially committed Toronto Star has not deemed it important to report on these disturbing cases. Some editorial commentators, for example in the Globe and Mail, at least mentioned the CTV reports, but only to reaffirm their seemingly unconditional trust in an expansive MAID regime, with the message that “poverty is the problem, not MAID; let’s not deprive the poor of MAID”. Social media pundits joined in with a similar tune.

There appears to be a lack of appreciation of how deeply troubling it is that MAID, fully funded and organized as standard medical practice, is now offered for suffering directly related to or even caused by poverty and social injustice combined with interrelated disability; that this obfuscates one of the core components of meaningful, autonomous choice; that legislatively enabling and tolerating this form of MAID normalizes killing as solution to suffering of persons who otherwise would have years or decades of life left; that this medicalizes social justice related suffering, and medicalizes solutions to it; and that it further undermines incentives to invest in inherently more costly support. And with that, I have not even mentioned concerns about the long-term impact on perceptions of the value of life of persons who are elderly, ill or disabled, the impact on families, and the impact on the integrity of health care practice. This form of MAID practice, as promoted in Canada, broadens the power of physicians and nurses, giving them a tool to ‘solve’ problems that they may not be qualified to appreciate and address, without acknowledgment of the inherent biases and conflicts of interest that can influence their professional behaviour.  

Those who attended our February online Health Law seminar on Disability Rights and the COVID pandemic will not be surprised by the CTV reports. At this seminar, Deborah Stienstra and Valérie Grandmaison presented their government commissioned report which contained clear warning signals; while two disability advocates, Sarah Jama and Gabrielle Peters (both speaking at the June 26 UN CRPD event--text of Peters' powerful presentation available here) expressed in their commentaries at our seminar already their deep anguish and outrage about how the pandemic was further pushing disabled people towards death-through-MAID. Those with a pulse on the disability community have known indeed for some time that such cases were occurring and that more were brewing, yet mainstream media and many social justice advocates have largely ignored these concerns.

What we witness here, is the perverse impact of how the federal and some provincial governments, with overall support by health professional regulatory colleges and medical organizations, have prioritized facilitating disabled persons’ death, rather than providing them the essential components for a dignified life. During parliamentary hearings about Bill C-7, The federal government and parliament were warned about this by many, including by nearly all Canadian disability organizations, three UN Human Rights Rapporteurs, and many health policy and law experts. But with Minister of Justice David Lametti leading the aggressive push for broad access to MAID, claiming that broad access was a matter of extreme urgency, parliament nevertheless approved Bill C-7. It was presented, remarkably, as a compassionate solution needed by disabled people—forget the collective resistance by about all disability organizations!--. Parliament even went to include in the new law MAID for mental illness, something Minister Lametti had originally explicitly excluded because, so he had stated in parliament, it required much more thoughtful reflection.

Fast-Tracking Towards Further Expansion: The Federal Joint Parliamentary Committee on Medical Assistance in Dying

It is in this context that a federal joint parliamentary committee of Senators and MPs is currently studying Canada’s developing MAID practice, and contemplating further expansion. The committee is mandated to look at four different issues, which it originally intended to have done by the end of June of this year: 1. Review of MAID law and practice in Canada since its introduction in 2016; 2. how to organize MAID for mental illness—considering the recent explicit legislative commitment to allow it by March 2023; 3. MAID for mature minors; 4. MAID on the basis of advance requests. 

I will save detailed commentary about the hubris of pretending this can reasonably be accomplished by a parliamentary committee in such a short time for another time. Granted, for one of the issues it is reviewing, MAID for mental illness, parliament has created its own urgency with the adoption of Bill C-7. Following a Senate introduced amendment, Bill C-7 controversially set March 2023 as the date by which the practice will be legally allowed, whether or not additional safeguards are introduced.  For the other issues, there is clearly no such urgency. Even with respect to mental health, the parliamentary committee should in all honesty still be willing to recommend that the government and parliament halt the expansion of MAID for mental illness. At least the Committee had the wisdom to expand the timeline of the overall review to the fall.

This short timeline appears to reflect what I mention in the Impact Ethics commentary reproduced below: how in a period of 7 years, a long-standing fundamental presumption against the acceptability of killing another person—even with consent—has been turned upside down in Canada. It is now nearly presumed to be an inherently beneficial practice, a fully state-funded and medical profession organized charitable endeavour; and this even when it is disconnected from facilitating the transition between life and death in exceptional circumstances when natural death is approaching (the scenario in the Carter decision). That ‘Medical Assistance in Dying’, a term increasingly ill-suited, since it is increasingly used to end the life of people who are otherwise not dying, is now resulting in the death of people who would have years or decades of life left has become irrelevant.

Giving a parliamentary committee the mandate to review so many complex and inherently ethically charged issues in such a short time sends the preemptive message that there is no reason for concern in Canada. Or rather: that the only reasonable concern is that MAID may not be sufficiently accessible and needs to be expanded, the faster the better. What the government is telling us, albeit in different wording: all is well with our MAID practice and will be well with further expansion, as long as it leads to fast access to ending of life, now also for persons with disabilities who are not dying.

A Troubling Pattern of Partisan Posturing

I have testified twice as part of the Joint Parliamentary review on Medical Assistance in Dying. A striking component of these hearings has been the strident partisan posturing of at least some of the parliamentary committee members, particularly some of the Senators; and their aggressive stance towards any witness who raises concerns about ongoing practices, or who provides reasons and evidence as to why we may need to avoid expanding MAID. Having participated in similar parliamentary hearings on other controversial health policy related topics in the past, the overall tone of the hearings, as well as the coordinated efforts by some to undermine the credibility of witnesses or to destabilize them during testimony, stands out. It may reveal how some of the most aggressive promotors of expansive MAID are becoming apprehensive about the fact that problematic practices are coming to the surface, and are uncomfortable about the accumulating evidence of dangers of expanding MAID further. Instead of wisely stepping back and listening to what witnesses have to say--with fortunately several committee members still apparently willing to do so--, some of the most vocal and active Committee members have dug in their heels. They appear to search relentlessly for confirmation of their seemingly unconditional support for current MAID practices in Canada and for further expansion.

One common tactic used by some Committee members is to question the credibility and qualifications of academic experts who express concerns about further MAID expansion by claiming “they never did a MAID assessment”, the suggestion thus being that they are not qualified to comment. This has been a favourite slogan used to question suicide experts and psychiatrists who have been warning that offering MAID outside the end-of-life context, and particularly for mental illness, risks undermining suicide prevention. Suicide experts, the majority of psychiatrists and mental health care providers, and many with lived experience, have serious concerns about this, with recent analyses confirming that these concerns are more than reasonable. (See also another Health Law Seminar this year that discusses some of the key issues about MAID and mental health). Several of the leading experts who testified before the Committee, have a demonstrable track-record of directly relevant clinical care and research, including on the intersection of MAID and suicide. 

The often ad hominem claims that psychiatrists or suicide experts who ‘never did a MAID assessment’ cannot provide reasonable evidence on these issues, ignores of course further that many MAID assessors have no psychology or psychiatry training, may be poorly trained for capacity assessments, and may have a bias towards, and strong professional--including financial--interest in providing MAID. It ignores also that no Canadian MAID assessor can really claim at this point to have significant experience in evaluating MAID requests for mental illness, since this is not yet legal in Canada. But that, of course, doesn’t matter for those who dislike the evidence and arguments from suicide experts and mental health professionals. Somehow, MPs invoking these claims also ignore that solely relying on those already involved in an arguably contested medical practice for an evaluation of the value and potential problems with that particular practice, creates a self-fulfilling prophecy.

Another popular tool is to challenge witnesses who convey concerns, often with examples, by responding that they are ‘giving anecdotes, not evidence’. This is a favourite tactic of Senator Kutcher, a self-proclaimed, albeit unlikely, champion of evidence-based medicine. Illustrative of his selective commitment to evidence-based policy-making: when the ‘anecdotes, not evidence’ tactic doesn’t work and evidence presented by experts clearly appears to contradict his position, he has at times invited friendly witnesses to confirm that the evidence of practices in other countries is irrelevant, since Canada can do things differently. Evidence seems to matter only when it can be invoked to support his claims. 

It is in this context that the below commentary was written. When testifying about advance requests for MAID on May 9, I shared in my short 5-minute statement evidence of concerns with the practice in the Netherlands, the only jurisdiction that allows MAID on the basis of advance requests of persons with advanced dementia who are not yet permanently unconscious (Belgium allows MAID based on advance requests, but only when they have become permanently unconscious) (my testimony is available here; my brief 1,000 word submission here).  I described how the practice involves surreptitious medicating of patients, to avoid their resistance, and has involved explicit suppression of physical resistance.  

After my testimony, Senator Wallin complained about my use of what she qualified as ‘negative terms’ such as surreptitious medicating. She reminded 'witnesses' that they needed to back up their statements with evidence and that they should only speak about issues they were qualified to comment on. The suggestion, clearly targeted towards my testimony, was that I had no  evidence for my claims. She did not provide an opportunity to respond. After filing a complaint to the Committee about her in my view misuse of parliamentary privilege in her treatment of expert witnesses, I was invited to submit a more extensive memorandum with references to provide evidence for my claims. (A copy can be found here).

Remarkably, while Senator Wallin appears squeamish about the term ‘surreptitious medicating’, a component of the practice of advance requests in persons with severe dementia, she is clearly convinced that we should just move forward without further study of the evidence, since she already submitted a bill to allow exactly this type of practice. It is hard to find a more fitting example to illustrate the zealous commitment of committee members towards further expansion of MAID.

Senator Wallin also employed another frequently employed tactic. In a later session, she invited another friendly witness to comment on one of the arguments I put forward, to solicit a firm rejection, rather than inviting me to clarify and provide further details. Litigators will be familiar with this tactic in the context of adversarial court proceedings. It is also not uncommon in the context of parliamentary hearings on politically charged issues. But one would have expected that parliamentary committee members participating in a review of an unprecedented new practice with serious implications, and the potential expansion of it through law-making, are not immediately looking at ‘winning the case’ and take their political, public interest obligations seriously. We'd particularly expect this, perhaps, from members of the "House of Sober Second Thought". We are, after all, talking about matters of life and death.

What is also disturbing is that academic scholars, some seemingly even more zealously committed to expansion of MAID than the committee members they are supporting, happily participate in this political posturing, with some of them, as documented in the commentary reproduced below, going as far as to term divergent interpretations of Supreme Court decisions ‘misinformation’. In this polarized debate, the bar seems to be lowered every day.  

TURNING HUMAN RIGHTS UPSIDE DOWN WITH ADVANCE REQUESTS FOR MAID

Trudo Lemmens shows how proposals to expand advance requests for medical assistance in dying (MAID) ignore the Supreme Court’s restraint reflected in the Carter decision and reverse constitutional and human rights norms.

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While a federal Joint Parliamentary Committee on Medical Assistance in Dying is still supposed to be exploring whether offering MAID based on an advance request (AR) should be expanded, one of its members, Senator Wallin, already introduced a bill to do exactly that; and Quebec’s government also wants to do so before the summer recess. An expansion would further allow MAID based on a prior signed form, when the person is no longer capable to confirm consent. When allowing this in situations of advanced dementia, we will be faced with what has evoked outrage in the Netherlands: the surreptitious medicating of patients with dementia who no longer understand what is done to them, to facilitate ending their life; and potentially suppressing their physical resistance.

The Netherlands was the only jurisdiction that allows MAID under such circumstances, and its Supreme Court recently endorsed the practice. Belgium allows euthanasia based on advance requests, but only when patients have become permanently unconscious. Since Bill C-7’s adoption, MAID can be performed with an advance request in Canada when the person satisfied the law’s access criteria and was able to consent at the time of signing the form. MAID providers are prohibited from ignoring refusal or resistance “expressed by words, sounds, or gestures” but the law undermines this safeguard by allowing MAID providers to interpret these to be “involuntary”, “made in response to contact.” The law remains silent about surreptitiously medicating patients. MAID advocates now want to expand ARs for MAID to allow someone to stipulate the circumstances in which they want to have their life ended, with another person deciding that the time has come.

During committee hearings, Professor Jocelyn Downie framed my claim that contemporaneous consent was “arguably constitutionally required” as reflected in the emphasis on “clear consent” in Carter as “bizarre”. In a recent Impact Ethics commentary, she characterizes this argument as “misinformation” – a remarkable framing of a colleague’s interpretation of Supreme Court decisions.  

Downie’s argument hinges on the truism that Carter does not explicitly prohibit ARs for MAID. Arguing that therefore you cannot make any claim about the Court’s view of its legality shows how some have turned an overall presumption against killing upside down. They start from the premise that health care providers ending life is beneficial practice and that any restriction needs to be unequivocally justified. This distorts the care the Court went to in Carter to ensure that its judgment not be taken more broadly than it was intended. 

Of course, Carter does not explicitly prohibit advance requests since that was not before the Court. But the Court went out of its way to emphasize that “clear consent” was a vital component of allowing some form of MAID in the restricted circumstances where it needed to be allowed.

First, it explicitly restricted its decision to “the factual circumstances in this case” – a person with ALS able to confirm consent – and made “no pronouncement on other situations where [MAID] may be sought.”

Secondly, Carter stated that “euthanasia for … persons with psychiatric disorders” did “not fall within the parameters” of its ruling, an exclusion Downie ignores in her Impact Ethics commentary.

Thirdly, the Court acknowledged that safeguards, beyond those of normal medical practice, were key, thus undermining the argument that ARs for MAID are permissible because they resemble advance directives in medical practice. It should be noted, as the Council of Canadian Academies’ report on ARs for MAID does, that with MAID, a third party is given the power to allow an active invasion of bodily integrity, whereas an advance directive related to withholding life-saving treatment involves abstaining from bodily invasion. ARs for MAID therefore cross a line between clearly voluntary and involuntary MAID.

Finally, the Court emphasized that MAID had to be available for a “competent adult” who “clearly consents”, citing Justice Smith’s statement that it would only be ethical when causing death is “clearly consistent with the patient’s wishes and best interests”.  The qualifiers “clearly” and “competent” are there for a reason. Dutch legal scholars have argued that their practice in the Netherlands violates the right to life under the European Convention on Human Rights, precisely because of the inherent ambiguity that surrounds the practice, which has been revealed also by other Dutch cases.

Instead of acknowledging that Carter confirmed the state’s strong obligation to protect life, and only carved out an exemption to a well-established prohibition, Downie now uses its narrow basis to justify expanding MAID, because, in her view, the Court didn’t explicitly prohibit it.

Promotors of expansive MAID ignore that preventing premature death remains a priority under constitutional and international human rights law. The fact that some may not get MAID when they want it is seen as of greater concern than the premature death of others, particularly those already stigmatized, discriminated against, and contextually vulnerable. This reflects a troubling, irrefutable utilitarian logic: when MAID becomes a solution to suffering, available on demand, it will always be prioritized, since it is 100% effective.

In 7 years, we have veered remarkably far from Carter, promoting MAID now when it may run counter to people’s current interests and desires. This constitutes in my view a direct violation of constitutional and human rights norms, including the International Convention on the Rights of Persons with Disabilities. At the very minimum, the Convention requires us to promote, not suppress, the expression of preference and involvement of persons with cognitive disability in decision making at the end of life.

Regardless of the various ways in which the Carter decision may be read, we should hope that the Committee and Parliament will take constitutional and international human rights concerns about advance requests for MAID seriously, and at least put a halt to further expansion of MAID in this very sensitive context.