Health

Canadians with mental disorders shouldn’t be excluded from requesting MAID

I’m a psychiatrist who’s worked on the topic of MAID and mental disorders for years. People with these disorders should be able to request MAID—just like all other Canadians.
Mona Gupta
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I’m an associate professor at the University of Montreal and a psychiatrist and bioethics researcher at the Centre Hospitalier de l’Université de Montréal. I’ve been involved in conversations about medical assistance in dying since 2015, when Quebec’s Act Respecting End-of-Life Care came into force. That act legalized medical assistance in dying (MAID) for adults with a serious and incurable disease who were at the end of their lives, provided they met certain criteria—among others, being able to give informed consent, being in an advanced state of irreversible decline, and experiencing intolerable physical or mental suffering. Around that time, I joined a hospital committee tasked with implementing the law, which meant thinking about how to assess mental suffering. As a psychiatrist, this caught my attention because assessing suffering is something we do every day. 

My initial work wasn’t related to MAID for people solely with mental disorders, because the eligibility criteria in Quebec—i.e., that a person be near the end of life—made it extremely unlikely that someone with a mental disorder as their sole condition would even be eligible. This was still the case in 2016, when the federal MAID law passed, legalizing it for people whose natural deaths were “reasonably foreseeable.”

That all changed in 2019. Two Quebecers —Jean Truchon and Nicole Gladu—argued before the province’s superior court that restricting MAID to people at the end-of-life violated the Canadian Charter of Rights and Freedoms. Justice Christine Baudouin agreed, ruling that the law was a violation of the “right to life, liberty and security of the person.”  The federal government amended its MAID law in 2021 to fall in line with the Truchon-Gladu decision, but it included a two-year exclusion for people whose sole condition is a mental disorder. Much of our national discussion since then has focused on whether we should extend MAID to people solely affected by mental disorders. But that word misrepresents the situation.  People with mental disorders were never excluded from these laws, so what we’re really talking about is ending their exclusion.

But this February, the government extended that exclusion for another year, until 2024, saying the extension was needed to ensure that provinces, territories and clinicians are ready. What this means is that a small number of Canadians who are suffering intolerably and want to apply for MAID must wait even longer, while their Charter rights continue to be violated. 

I’m concerned about something beyond legal arguments, though—I’m worried about the message this sends about the status of people with mental disorders in our society. In essence, that they can’t be trusted to make their own decisions, and they require the state to exercise control over their lives, an idea we’ve been moving away from in psychiatric care over the past several decades. Quebec has now gone even further, introducing a bill with a permanent exclusion from MAID for people with mental disorders. Rather than trying to figure out an approach to handling the complexity related to these MAID requests, our solution as a society is to take away people’s rights. 

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That’s despite all the work that has gone into grappling with this complexity—work that I’ve been part of. One of the government’s tasks during the two-year exclusion period was to strike an expert panel on MAID for people with mental illness (the government used the expression “mental illness,” though the clinical language is “mental disorder”). I chaired that panel, which brought together people with different perspectives—experts in law and in ethics, MAID providers, psychiatrists, social workers and people with lived experience. We met every two weeks for almost six months, exploring the kinds of complex cases being seen in practice and how they were being handled.  We discussed relevant court decisions, assessment practices and access to resources for people with mental disorders. We talked to experienced colleagues in the Netherlands, one of the small number of countries that permits assisted dying for people with mental disorders. Finally, we discussed the different mechanisms that exist to change and improve MAID practice, and what bodies and levels of government have the power to make such changes.

We delivered a final report last May, outlining 19 recommendations to ensure that complex MAID requests, including those by people with mental disorders, are appropriately assessed. For some, our recommendations weren’t stringent enough, because we did not recommend that the law be changed. 

So why didn’t we? Most of the concerns raised about MAID and mental disorders have focused on how to assess those requests. But the clinicians who perform those assessments work under provincial jurisdiction, even though Canada’s MAID law is under federal jurisdiction. If we want to ensure requests are handled responsibly, changes to federal law aren’t going to get us there. Besides, an entirely new legal structure, applying only to people with mental disorders, would not cover all the kinds of complex cases that are out there. What we need is extra guidance and rules to help clinicians handle all kinds of complex cases. Within our health care system, provincial and territorial regulatory bodies are the ones with the authority to develop rules that practitioners will follow. Most already had a set of rules about MAID—so the panel recommended they develop additional rules for complex MAID requests, including MAID for mental disorders. This was our very first recommendation. Here are some examples:

Canada’s MAID law requires that a person requesting it is affected by an incurable illness, disease, or disability and be in an irreversible state of decline in capability. People often ask how “incurable” or “irreversible” can be defined when talking about mental disorders. And yes, this is difficult, because these terms suggest certainty, and the evolution of many mental disorders is hard to predict. But that’s also true of other chronic conditions. What we do in those cases is evaluate how well someone has responded to past treatment. Unfortunately, some people don’t respond to treatment, no matter how extensive.  This is true in all areas of medicine, and psychiatry is no different. That’s why we recommended that a person has to have had an extensive treatment history before they could be considered eligible for MAID on the basis of a mental disorder. 

This makes clear that the kind of person who could be eligible is not someone simply going through a tough time. The vast majority of Canadians, including politicians and even most clinicians, will never meet a person with the type of severe disorder that could make them eligible for assisted dying. These folks are often well-known to the psychiatric system, and have endured years of mental suffering, attempting all kinds of treatment—medications, neuromodulation techniques, therapy, social supports. Still, they can’t function in their lives. They can’t work or have relationships or engage meaningfully in their communities. Think about what it would be like to be so severely afflicted that you spend most of your life watching it pass you by, and to have its end be your only goal. 

What about questions of consent? Assessing someone’s capacity to give informed consent can be difficult, especially when the symptoms of a condition—like a mental disorder—could affect how they understand the decision. We recommended that assessors undertake thorough capacity assessments—over multiple visits, if necessary. All MAID requests made outside a person’s end-of-life require a minimum of 90 days to elapse between a request and an eventual provision. But it could take longer than that to come to a decision about whether someone is eligible, and we recommended that practitioners take the time they need even if that goes well beyond 90 days.

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The issue of suicidality has also been raised often. The panel looked at the current practice of suicide prevention to inform its recommendation—what we said was that clinicians should continue to use all appropriate suicide prevention efforts, just as they do now. At the same time, it’s important to note that every day, people with and without mental disorders make decisions that could lead to their deaths. They refuse chemotherapy. They stop dialysis. They continue to engage in behaviours—like severe substance use—that are potentially lethal. Do we prevent people from making those decisions, saying they are suicidal? No. We work with them to understand why they make those choices, and we try to help them arrive at the best decision for them, consistent with their own values and beliefs. In some cases we can establish that the person does not have what we call decision-making capacity.  In those cases, a person is legally not entitled to make their own decisions. We can do the same thing with a MAID request. If you are in a mental health crisis, that is not the time to be having conversations about MAID, as the panel made clear.

Over the past few years, the public discourse about mental health has exploded—and that’s a good thing. We want people to be able to feel comfortable seeking help for mental disorders, and to not fear stigma if they do. But we can’t say on one hand how important it is to destigmatize mental disorders, and on the other hand pass laws that single out people with those disorders, portraying them as unable to make their own decisions. It’s important not to underestimate the stigma that already exists: some people our panel heard from—people with lived experience—were worried that even if MAID was allowed for people with mental disorders, their requests wouldn’t be taken seriously. They were concerned that assessors might wrongly assume that they can’t consent, or might underestimate the severity of their suffering. And since the announcement of the recent delay, I’ve heard of patients with potentially qualifying physical conditions who say that they’re going to hide their history of mental disorder because they’re worried it will be used to exclude them. 

The irony is that under the current regime, people with mental disorders already have access to MAID. They just need to have some qualifying physical condition. Imagine someone who has a severe mental disorder who says they want to apply for MAID. They can’t. The very next day they’re diagnosed with a serious cancer. Suddenly all the things that were too difficult and too complex to sort out yesterday–whether the person is suicidal, whether they have capacity to consent, whether the request is a result of unmet social needs–can be figured out today. It doesn’t make a lot of sense. 

I never expected to spend so much time thinking about and working on MAID. But as a psychiatrist, I think it is important that those individuals who, tragically, have experienced severe, lifelong suffering due to mental disorder have the same options as all other Canadians. 

—As told to Caitlin Walsh Miller