Front Burner - Mental illness and assisted death: a front-line doctor’s fears

Episode Date: November 17, 2022

This spring brings a significant update to medical assistance in dying, known as MAID, in Canada. On March 17, 2023, Canadians with a mental illness as their sole condition will be eligible. This evolution is controversial. The change also has some doctors who have been at the forefront of helping people die medically, called MAID providers, feeling increasingly uncomfortable. Dr. Madeline Li is one of them. She is a psychiatrist and a MAID provider who developed the MAID framework for the University Health Network in Toronto. She joins Front Burner today to share her concerns.

In the Dragon's Den, a simple pitch can lead to a life-changing connection. Watch new episodes of Dragon's Den free on CBC Gem. Brought to you in part by National Angel Capital Organization, empowering Canada's entrepreneurs through angel investment and industry connections. This is a CBC Podcast. Hello, I'm Jamie Poisson. Are you afraid to die? Who isn't?

Yeah, I mean, it, it, uh, I am. That's Amir Farsud, speaking with City News in St. Catharines, Ontario. He's a 54-year-old who lives with constant pain from a back injury. He takes medication for depression and anxiety, and he started the process of applying for a medically assisted death. But Amir says it wasn't just his pain that drove him to apply for help to die. It was his fears over being homeless. I don't wish to be dead.

Even with the pain, even with the meds, I still want to be here. Amir's story, it upset a lot of people. And just yesterday, he said that an outpouring of support has made him change his mind. But he isn't the only case that has alarmed people in recent months. And it comes in the lead up to a significant update to medically assisted death known as MAID coming this spring. As you might remember, MAID was introduced in 2016. The criteria then expanded in 2021, and now it's set to evolve yet again to include Canadians with a mental disorder as their sole condition. This evolution, though, it has some doctors who have been at the forefront of helping people die, feeling increasingly uncomfortable.

Dr. Madeline Lee is one of them. She's a psychiatrist and a maid provider who developed the MAID framework for the University Health Network in Toronto. Dr. Lee, hi. Thank you so much for making the time today. Thank you for inviting me to do this interview. It's really a pleasure to have you. So as I mentioned in the introduction, we're hurtling towards this March 17th deadline where access to medically assisted death will expand to include Canadians with a mental disorder as their sole condition. And I just want to be clear here, does that mean that someone who suffers from depression or schizophrenia might qualify for a medically assisted death? Yes, that's exactly what it means.

And how is this different from the way MAID was introduced back in 2016? Like, what did it look like then? And how has it evolved since then? Thank you for the question, because I think it's a point that the Canadian populace at large is maybe not aware of as the MAID legislation has evolved. And I even find many healthcare providers aren't aware of what's happened. That originally, because of Supreme Court challenges, that originally, because of Supreme Court challenges, MAID was legalized for people who were actually dying. All the legislative criteria spoke to somebody whose death is fairly imminent. Madam Speaker, I'm pleased to rise in the House to address Bill C-14,

which would, for the first time in our country's history, create a federal legislative framework to prevent medical assistance in dying across Canada. The bill would require that the person have a grievous and irremediable condition, which is defined in the bill. And then what happened, because of further legal challenges, they took out the requirement that a patient needed to have a reasonably foreseeable natural death. And that opened up MAID to people who are not dying,

to anybody with a chronic health condition. And of course, that would include anybody with a mental disorder. The new law would allow people who aren't already close to death to have a doctor's help to die. After a recommendation from the Senate last month the government is now adding those who are suffering only from mental not physical illness. The change would take effect but because of concerns around the challenges of assessing somebody with a mental disorder they just put a hold on that until March but in as of March of next year people with a mental disorder, they just put a hold on that until March. But as of March of next year, people with a mental disorder will be able to apply for and receive MAID. And I think that's a gradual expansion of eligibility beyond just people who are dying. And I think that's something

that we need a better understanding of whether Canadians are comfortable with that. I'm not sure that there's a public mandate for that. I don't think we know. Yeah. I want to dig into the mental health aspect with you even more in just one minute. But first, if we could just go back to the expansion in 2021, right? So as you said, it was originally for people with foreseeable death, and then that requirement was taken away. And so, for example, I talked about Amira Farsud in the intro, who has this incredible back pain, which obviously is not a foreseeable death. And I'm sure you can imagine hearing stories like this is incredibly upsetting for people. And what would you say to a person, lots of disability advocates, for example,

who think MADE has already gone too far, not including the mental health expansion, that this is already too much? I agree that there are real challenges with how the law right now is framed. I actually think legally the law doesn't sufficiently safeguard. And the end result is that safeguarding has been left in the hands of the assessors and providers have made. It's been left in the hands of clinicians. left in the hands of clinicians. The definition is intended to be applied flexibly by physicians and nurse practitioners who can use their training, ethics, and good judgment

to apply the criteria. And my concern around that is that it's too variable, that clinicians bring their own lens of, you know, what they feel, their own value systems and what they think is right or wrong, and there will be inconsistency across the country. And so an individual patient, there's no limit on how many assessments you can have. And an individual patient can, you know, have one assessor and say they're eligible and another say they're not, and then ask for a third

and a fourth and a fifth until finally they find two that will find them eligible. And they will eventually find two that find them eligible because the law is not specific enough. And in that sense, there are no legal safeguards. You led the framework for MADE at the UHN, which is a collection of hospitals in Toronto. You've administered deaths directly to patients and overseen hundreds of cases, right? And so what is it like for you as a doctor working in this very variable system? You know, I have become comfortable with providing MAID for patients. And I recognize that it's something Canada by large supports for those

who are dying. I thank you for that question because I am increasingly myself becoming uncomfortable with the expansion and the lack of consistency across the country and about who is now accessing MAID. There are cases that I think aren't being assessed in a thoughtful way. And we've heard about these cases who focus on legal eligibility almost as a checklist. Do you meet these criteria? Without thinking about beyond legal eligibility, is this decision made in this particular patient circumstance clinically appropriate? particular patient circumstance clinically appropriate. I've even been told that appropriateness is not a word that an assessor is allowed to think, that there should be no

appropriateness in the law. But I think that beyond eligibility, there is a role for clinical judgment. And actually, that's not built into the law. And that's a problem. And currently, I mean, if it's not built into the law, is there any, and my apologies if this is a silly question, but is there any recourse here? Like, can a group of doctors like yourself involved in MAID say, I think that maybe these doctors are going too far, or there needs to be some sort of review of these decisions? Like, is there any recourse built into this? I think there's two sources of recourse. One is work that I'm involved in and trying to develop educational standards. So I'm working with the Canadian Association of Maid Assessors and Providers to develop a standardized educational

curriculum that we're hoping to roll out across Canada that will provide some more consistency and approach for how patients are being assessed and to bring a thoughtful approach to assessment. And there will be modules in that course and that curriculum that focus on how we're assessing capacity and vulnerability and a module specifically on the topic of mental

disorders as the sole underlying medical condition. So I'm hoping that that will improve consistency across the country. I also think, and many people have recommended this as a process, I hope the government will take them up on this recommendation, that we develop some kind of oversight process so that cases can be reviewed in detail, not just did the checklist happen and we know where the form signed appropriately, that kind of procedural thing, but the quality of cases can be reviewed and that we will learn as a community, as a MAID community, we will learn from those cases and improve the quality of our practice. Coming back to this expansion on March 17th for mental health disorders. What are the biggest challenges you think facing providers once MADE is expanded to include mental illness? So many. Yeah. Yeah, it's hard to get it into 20 minutes. I think the healthcare system isn't adequately prepared right now. So the biggest challenge is that education hasn't happened yet and I don't think can be adequately rolled out before March, like in the next four months.

I think that we don't have this oversight process in place yet. I think Canada hasn't infested enough in the last couple of years that we've had in preparation to increase access to mental health resources. And I think that's a problem that's even worse now because of the pandemic. I think the pandemic has driven the demand for mental health resources to a crisis level. And we haven't, Canada hasn't put in anything to meet the supply end of that. And so in addition to people needing mental health resources because they're requesting MAID, we haven't got an answer for that in Canada.

I also think we haven't had the chance to put in the infrastructure for providing this. We haven't had the ability to, we didn't have the time to put together a panel of clinicians who will do this work. And I know that every province is thinking about this, but nobody has really, we're just at the beginning of starting this and I don't think we can do it by March. You're explaining to me an industry that's not, in your opinion, not ready for this. You're backed up by organizations like the Center for Addiction and Mental Health in Toronto that says assisted dying should not be expanded without more study.

A legislative committee in Quebec has recommended the province not expand made to mental illness period. And so is this a foregone conclusion? Like what could something happen before March 17th to put the brakes on this? I think that's up to the legislators who are currently reviewing the law. I mean, I think the other reason why we're not ready is that we're blind to the final legislation. We're trying to prepare, blind to knowing what we're prepared, what rules we're blind to the final legislation. We're trying to prepare, blind to knowing what we're prepared, what rules we're going to have to follow. We've had several indications, including the expert panel report that came from the government,

that there doesn't need to be changes to the legislation. I'm arguing that I think there probably does, but we don't know yet what the final conclusions are going to be. We don't know what the outcome of that legislative review is going to be and whether there will be legislative changes. But is it too late? Not if the government is listening to this podcast. In the Dragon's Den, a simple pitch can lead to a life-changing connection. Watch new episodes of Dragon's Den free on CBC Gem. Brought to you in part by National Angel Capital Organization. Empower empowering Canada's entrepreneurs through angel investment and industry connections.

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I help you and your partner create a financial vision together. To listen to this podcast, just search for Money for Couples. One big issue at play here that I wanted to talk to you about is the Canadian commitment to autonomy of the patient, right? Could you give me an example of how complicated this issue now becomes as a maid provider when you are faced with a young, otherwise healthy person with a mental illness who wants to access medically assisted death? Yeah, so, you know, I think,

thank you again for asking that question because I think it's really key. Autonomy has been the push behind why we can't deny MAID to people with mental disorders, why MAID exists at all as an option. And I think it's a very important principle. And the legislation has always said that we need to find what I call this muddy middle, this balance between respecting the

autonomy of an individual and protecting vulnerable people. And I think it's a spectrum and clinicians sit somewhere along that spectrum of whether they individually prioritize autonomy or protection for a patient. I think there's a trade-off depending on where you sit at the ends of that continuum that we can't pretend doesn't exist. And for a clinician who strongly prioritizes autonomy, we can't deny that arguably some people will receive MAID when maybe they're arguably eligible, you know, that society is not comfortable with their eligibility. For clinicians that very strongly prioritize protection, some arguably eligible people won't be given MAID and they'll be forced to live lives of what they consider intolerable suffering.

That's a trade-off. I think that's really hard. We are healthcare providers. We want to help our patients. Nobody's trying to harm patients in any way. I sincerely believe that. And I think the end result is where the line is for the appropriateness of assisted dying, that responsibility falls to a clinician. And I think that's actually really hard for health care providers. Why do you choose to do this kind of work? Because you don't have to, right? It's so thorny and difficult and there are so many pitfalls and it's so controversial. Why do you do it, if you don't mind my asking? It's a great question too. I ask that all the time. And I ask all the time,

why do I continue doing it given the expansion in the law and my increasing discomfort around it? I do it because I think it's really, really important work. It's why I'm a doctor, right? To help people with suffering. And somebody who is suffering enough to want to die is a patient that really needs my help. And it's my vocation to help suffering people. And so that's why I originally came into this work. And I feel like I am doing that. You know, if I think about it now, why am I working on this education? Why am I really trying to establish this muddy middle position? I think I'm a little more involved now because I think there hasn't been a big enough voice in the realm of protecting the vulnerable. I think the voices that are pushing for respecting patients' autonomy are strong, have had to be strong from the beginning. No question that when the legislation first passed and doctors were doing this, there was a lot of

opposition. And I think people working in the area of MAID had to be strong. Advocates had to fight against resistance, had to defend their positions. It's really remarkable how well accepted it's been, how it's really become a standard part of medicine now. And maybe it's time to lay down our defenses because it's established in medicine now and focus more on the other end is we've forgotten to pay attention to the vulnerable people.

And I think that's what motivates me now that I want more attention on. Now people are accessing it. How do we help those who are maybe vulnerable to accessing it? Right. That's such a thoughtful, that's such a thoughtful answer. And it made me think, like, I think think which we haven't really talked about that much in this conversation there are lots of people that have used this in Canada who you know were facing a terrible death and and were able to control the end of their life and and I think

maybe people listening know somebody who who got to that, and that was a very positive experience for them. So I think it's worth us underlining that, that this hasn't all been negative, right, for people who ultimately believe in this. Absolutely not. I'm very much in support of MAID as an option in Canada. We had good palliative care. And these were patients who were saying, and we know the main reason that people want MAID is not physical suffering because we have good palliative care. It's mostly psychological suffering, existential suffering. That's what I do for a living. And these patients saying to me, no, I don't want your help. I want you to end my life instead. And I initially struggled with that. But what I learned in seeing some cases is that there are patients actually for whom MAID is the only way to help them for multiple reasons. But not only is it the only way to help them, it is the most effective way to help them. And it does help them enormously.

I do think MAID is a medical intervention. And I have come around to being very supportive of it. I have not had the experience yet. I haven't seen a case of MAID for mental disorders as a sole underlying medical condition. Maybe I would change my mind if I saw some, but I haven't had the experience yet. And I think, you know, the cases like Amir Farsud, who you mentioned at the beginning, we're seeing them in the media without seeing the whole story. seeing them in the media without seeing the whole story. I think that every case needs to be assessed on a case-by-case basis.

It's really hard to tell from the media story what's gone into decisions. And they're complicated right now because these are cases that are mixtures of something physical, like chronic pain and mental. So it's hard to sort out the two. on this issue of of mental health as a sole condition canada is not the first country to move in this direction right like i Like, I know if we do move in this direction, we'll be one of the most liberal countries in the world when it comes to MAID. But the Netherlands, for example, has gone down this road for a long time. I think it's two decades now, right? And so do we have any preview here of how this could potentially play out? Like, what trends have emerged there?

So we can learn from that a bit, but also we need to be careful about whether their experience has any lessons for us because Canada's setting is different. I mean, we do know that the emerging trends in Belgium and the Netherlands are concerning in the sense that the rates have increased over time of psychiatric euthanasia. And we know the statistics around the demographics that whereas made, there's not a big sex and gender differential. Men are accessing made equivalently and receiving made equivalently to women in canada the last year or so there's been a trend towards slightly more men but it's a very small thing um in psychiatric euthanasia it's very clear that women access it more and we have to ask why you also see a younger population accessing psychiatric euthanasia in the Netherlands, where I think the analogies are maybe not as helpful as around the prevalence.

The prevalence of MAID for mental disorders is very low, and that's because their mental health resources are actually much better than Canada. So, you know, with the literature where they've surveyed their populace, only 2.5% of people in Belgium would say that their mental health needs were fully unmet. An equivalent kind of study in 2020 in Canada said that 21% of Canadians feel that their mental health needs are fully unmet. So we are 10 times, we are providing mental health services at 10 times less the rate. And so I think we'll see a larger volume probably based on that. Madeline, thank you so much for this. It was really eye-opening and incredibly interesting listening to you. And thank you for being so frank about this. Thank you. listening to you and thank you for being so frank about this. Thank you. My pleasure. I hope that the legislators are listening to this interview.

So thank you for inviting me. All right. So before I let you go, I just wanted to briefly go over how the government has responded to previous criticisms related to MAID and its expansions. Both the health and justice ministers have spoken out addressing the concerns over MAID. And from their perspective, they say they do have safeguards and a criteria to protect people. A spokesman for Canadian Justice Minister David Lametti, for example, has said the government added safeguards like informing people of alternatives such as mental health support and palliative care. All right, that's all for today. I'm Jamie Poisson. Thanks so much for listening. Talk to you tomorrow.