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Canada is expanding categories for medically assisted death
Canada is expanding categories for medically assisted death
NPR's Michel Martin Speaks with Dr. Madeline Li about how Canada is set to expand the categories of those who can request medical assistance to end their lives to include people with mental illness.
MICHEL MARTIN, HOST:
Canada has allowed terminally ill patients to end their lives with medical assistance since 2016. And eventually, even as early as next March, Canadians living with severe mental illness could also be eligible under the law known as medical assistance in dying, or MAID. But as you might imagine, that has raised many difficult ethical and moral questions, both about the motivations of health care workers who might offer the option and also about the competence of patients who might request it.
We suspect that this is the kind of dilemma that might resonate across borders. So we called Dr. Madeline Li to walk us through some of these thorny issues. She is a cancer psychiatrist who works in end-of-life care. And Dr. Li actually developed the medical assistance in dying program for the University Health Network in Toronto, Canada. And she is with us now. Dr. Li, welcome. Thank you so much for joining us.
MADELINE LI: Hello. And thank you for the invitation to speak on this really challenging topic.
MARTIN: It certainly is. So can you just kind of just set the table for us? Who can currently request medical assistance in dying in Canada? And do you have any sense of how many people actually do in the course of a year?
LI: The issue in Canada is that it's actually never been clear who assisted dying was intended for, whether it was meant for those with terminal illness who are suffering from how they were about to die or whether it was intended for people with chronic illness who are suffering with how they're currently living. It's unlike the States where - in the States where it's legal, assisted dying is only for terminal illness and people who have less than six months left to live. So their deaths would occur whether they were medically assisted or not.
In Canada, it was always the case, from the beginning in 2016 when it was legalized, that people with chronic diseases who still naturally could live for several years were qualifying for assisted dying. And in March of 2021, the Canadian law changed. It really opened up to allow for more chronic conditions for things like chronic pain. And so that's who is qualifying now, both people who will be dying shortly and those who are living longer but really suffering with how they're living.
MARTIN: Well, I thank you for the distinction between the Canadian program and the U.S. program because it - medically assisted dying is very rare in the United States as an option. And so do you have a sense of how many people in Canada have taken advantage of this option since it became legalized?
LI: There have been - over 30,000 people have received assisted dying since it was first legalized - 10,064 patient (ph) in 2021. That accounts for 3.3% of all deaths in Canada.
MARTIN: Is it accepted as a right in Canada? Or is it still controversial?
LI: So I would say assisted dying for people who are dying, who have terminal illness, is widely accepted. I'm surprised at how quickly it became normalized - and that's the term I would use - that in clinical practice, people accept it as a routine option at the end of life now. I think it is less normalized, less accepted for people who actually aren't facing end of life. So for people who are choosing MAID because of a chronic condition and still have several years to live, I think that is - there have been many more concerns raised about that as the eligibility criteria are expanding in Canada.
MARTIN: Oh, I see. Can you just talk a little bit about the role of the medical professional?
LI: In some ways, the law has placed medicine in the role of safeguarding the practice and establishing eligibility criteria. And the doctors are required to make sure patients meet those eligibility criterias (ph) and assess their suffering from their medical condition. And so in terms of the actual practice, it's the role of the doctor to assess whether a patient is capable, whether their condition is reversible or not, whether they've adequately considered the alternatives to MAID in terms of relieving their suffering. Clinicians also play a role or should be trained to play a role in helping patients make the best decisions for themselves.
MARTIN: What is being contemplated here in expanding the program? And how does mental illness play into it?
LI: Assisted dying has been legal since 2016. And then, in March of 2021, it expanded so that you no longer needed what was called a reasonably foreseeable natural death. They excluded, specifically excluded, situations where a mental disorder was the only medical condition that was causing the suffering. And it was introduced originally because they felt that this was a more complicated group, and we needed more time to figure out how to safely assess and provide MAID to people with mental disorders. And that is now set to expire in March of next year. And so patients with only a mental disorder as the basis of their suffering can request and receive MAID if they meet all the eligibility criteria.
MARTIN: You can't diminish people's agency, your sense of agency, because - just because they're living with mental illness. But one of the issues, I think, that concerns people is that, how do you know the person is truly competent? How would you assess that?
LI: I think that's a really good question, and it is the core of the challenge right now to me, the core of the problem with moving ahead with MAID for mental disorders. We don't actually have good frameworks for how to assess capacity when there is a significant emotional component to how people make decisions. I mean, what we've been doing up till now is very straightforward. Very few people are found incapable because it's not that hard to understand that you're going to certainly die with MAID - like, cognitively, to understand what my life could look like with and without MAID. And the only people that weren't qualifying before were people who were, frankly, psychotic or clearly, impulsively suicidal because they were depressed. And that's easy to say, you know, from those extremes, are you capable or not?
The big challenge is people who are not acutely distressed but have been living with - and that's clouding their judgment and their impulsivity. How do you distinguish people who are unduly influenced by their mental disorder, who emotionally are hopeless, who - and this is more common in people who are marginalized by things like mental disorders where part of what might be driving their desire to die is psychosocial vulnerability, that they lack housing, they lack finances, they lack relationships and if that's driving their desire to die and could be remediable but they're hopeless around it.
I think it is a very challenging issue. You know, I do have a personal opinion. I think we should not exclude patients with mental disorders from accessing MAID. But I also think we're not ready 'cause we don't really understand how to do this well.
MARTIN: We've had, in the United States, a couple of cases - they are rare - of individuals who have encouraged people to take their own life. And then, they subsequently did that. And I think there is a concern that people who are considered - I don't know how else to put it - like, not as important to the society - right? - not as important to be here, be encouraged to take their own lives. I think there is that concern, isn't there?
LI: Yeah. And that's been in the news recently, that it's been raised to our veterans with post-traumatic stress disorder who are seeking help and can't access it, have been - there've been some cases in the news where they've been offered MAID as an alternative. And should that be raised? Is there almost in what I would call an iatrogenicity - right? - that this is the medical system causing harm by raising that?
MARTIN: Do you mind if I ask - and you don't have to tell me, but I do understand that this is something that's affected you personally. Would you mind telling us if this has occurred in your own family circle or extended family circle? And how you handled it?
LI: What I have openly published on is the experience of my mother requesting MAID in the context of a medical condition. She had an acute bowel obstruction and was suffering from that on the background of having had Parkinson's disease for many years that was quite in an advanced state. She'd been talking about wanting, considering MAID for a long time. And then, in the context of an acute bowel obstruction, which is another physical thing, she asked for MAID. And the challenge was that that acute bowel obstruction gave her severe pain. She was starving 'cause they couldn't let her eat anything for several weeks. And with the combination of physical and psychological suffering, she was asking for MAID.
And there is a good example. So it's not mental disorders as a sole condition, but it was comorbid psychological suffering in the context of physical suffering. This was a woman, at that time, who I think it would have been really challenging to say how capable was her decision because she, in some ways, was unduly influenced by the nature of her own emotional suffering in that moment. I think her capacity, because of the mental health components, would have been really hard to separate. Now, she didn't have - I wouldn't say she was depressed. She didn't have, like, a clear disorder in that way. But she was demoralized, which is a psychological state.
MARTIN: What are some of the things you would want us to think about as we think about this issue?
LI: I think the lesson learned from Canada for other jurisdictions considering legalizing some form of assisted dying is to be really clear, from the beginning, who you intend MAID to be for. I think Canada made actually the mistake of our law being too Canadian. It started out by setting criteria that were vague enough to offend nobody so that people on both ends of the continuum around autonomy and protection would be satisfied. And for me as a clinician, that would help because, you know, I very much think I - I'm a servant of this country. I was trained by my country, and I want to do what most - I will do what most people think is the right thing to do. But that hadn't been clear in Canada. I think international jurisdictions should know what their population wants and then be clear about it from the beginning.
MARTIN: That was Dr. Madeline Li. She's a professor in the Department of Psychiatry at University Health Network and a clinician and researcher in the Department of Psychosocial Oncology and Palliative Care at Princess Margaret Hospital, which is in Toronto, Canada. Dr. Li, thanks so much for joining us today. This has been a very interesting and thought-provoking conversation.
LI: Thank you for your interest.
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An expert committee reviewing euthanasia deaths in Canada’s most populous province has identified several cases in which patients asked to be killed in part for social reasons such as isolation and fears of homelessness, raising concerns over approvals for vulnerable people in the country’s assisted dying system.
Ontario’s chief coroner issued several reports on Wednesday – after an Associated Press investigation based in part on data provided in one of the documents – reviewing the euthanasia deaths of people who were not terminally ill. The expert committee’s reports are based on an analysis of anonymized cases, chosen for their implications for future euthanasia requests.
Canada’s legal criteria require a medical reason for euthanasia – a fatal diagnosis or unmanageable pain – but the committee’s reports show cases in which people were euthanized based on other factors including an “unmet social need”.
AP’s investigation found doctors and nurses privately struggling with euthanasia requests from vulnerable people whose suffering might be addressed by money, social connections or adequate housing. Providers expressed deep discomfort with ending the lives of vulnerable people whose deaths were avoidable, even if they met the criteria in Canada’s euthanasia system, known nationally as Maid, for medical assistance in dying.
“To finally have a government report that recognizes these cases of concern is extremely important,” said Ramona Coelho, a doctor on the expert committee. “We’ve been gaslit for so many years when we raised fears about people getting Maid because they were poor, disabled or socially isolated.”
In the case of a man identified as Mr A, Ontario’s expert committee questioned whether authorities tried hard enough to relieve his pain before he was euthanized. Mr A was an unemployed man in his 40s with bowel disease and a history of substance abuse and mental illness. He was described as “socially vulnerable and isolated”. Some committee members were alarmed that a psychiatrist suggested euthanasia during a mental health assessment.
Another case focused on Ms B, a woman in her 50s suffering from multiple chemical sensitivity syndrome, who had a history of mental illness including suicidality and post-traumatic stress disorder. She was socially isolated and asked to die largely because she could not get proper housing, according to the report.
Committee members could not agree whether her death was justified; some said that because her inadequate housing was the main reason for her suffering, she should have been disqualified from euthanasia. Others argued that “social needs may be considered irremediable” if other options have been explored.
Sonu Gaind, a professor of medicine at the University of Toronto, said the coroner’s reports were alarming for numerous reasons, notably the handling of mental health conditions in those seeking euthanasia.
“What we’re doing in many cases is the opposite of suicide prevention,” he said, citing an example of a man in his 40s who had previously tried to kill himself and did not have a definitive diagnosis when his euthanasia was approved.
Scott Kim, a physician and bioethicist at the National Institutes of Health in Washington, said the real issue was the permissive nature of Canada’s law. Despite polls showing widespread support for expanding euthanasia access, he questioned whether most Canadians understand what is allowed and said it was “baffling” that officials had not previously considered these issues.
The expert committee made numerous recommendations, including assigning patient advocates to support people considering euthanasia and providing more guidance to doctors and nurses who assess requests from nonterminal patients.
The committee noted that legally mandated safeguards were probably not met in nearly 2% of cases. Despite that, experts say, no doctors or nurses have ever been prosecuted.
Trudo Lemmens, a professor of health law and policy at the University of Toronto, said medical professional bodies and judicial authorities in Canada appeared “unwilling to curtail practices that appear ethically problematic”.
“Either the law is too broad, or the professional guidance not precise enough,” Lemmens said. “Or it is simply not seen as a priority to protect some of our most vulnerable citizens.”
So far, Ontario is the only province or territory in Canada to release summaries of cases that could signal problems in euthanasia approvals.