The Agenda with Steve Paikin (Audio) - What Do The Numbers Tell Us About Medically Assisted Death in Canada?

Episode Date: January 16, 2025

Health Canada's 5th annual report on medical assistance in dying was released in December, reflecting numbers and demographics from 2023. For the first time, race and Indigenous identity, and disability were measured. For a discussion on who is requesting and receiving MAID, and for what illnesses, we welcome James Downar, Clinical Research Chair in Palliative and End of Life Care, Faculty of Medicine, University of Ottawa; Rebecca Vachon, Program Director of Health at Cardus Canada; zSonu Gaind, a psychiatrist and professor at University of Toronto; and Sandy Buchman, a palliative care doctor working out of North York General Hospital.See omnystudio.com/listener for privacy information.

I'm Matt Nethersole. And I'm Tiff Lam. From TVO Podcasts, this is Queries. This season, we're asking, when it comes to defending your beliefs, how far is too far? We follow one story from the boardroom to the courtroom. And seek to understand what happens when beliefs collide. Where does freedom of religion end and freedom from discrimination begin? That's this season on Queries in Good Faith,

a TVO original podcast. Follow and listen wherever you get your podcasts. In its fifth annual report on medical assistance in dying, Health Canada included demographics such as race, indigenous identity, and disability in its findings. To discuss what the report says about who is requesting and receiving MADE and for what illnesses, we welcome in the nation's capital, James Downer, Clinical Research Chair in Palliative

and End-of-Life Care in the Faculty of Medicine at the University of Ottawa, and Rebecca Vachon, Program Director of Health at Cardus Canada. And joining us here in the studio, Sandy Buckman, Palliative Care Physician at North York General Hospital and Professor in the Department of Family and Community Medicine at the U of T. And Sonu Ghand, Psychiatrist and Professor in the Temerty Faculty of Medicine

at the University of Toronto as well. And we are delighted to have you two here in our studio in Toronto and to our friends in the nation's capital, thank you for joining us as well. I wanna start by just getting some of this background on the record here and then we can continue to discuss after that. So I'll ask our director Sheldon Osmond

to bring up this graphic and I shall read along for those listening on podcast. Health Canada in the year 2023, which is the last year for which data is available, received nearly 20,000 requests for made. And here's how it rolled out. More than 15,000 of those 20,000 received made.

The remaining either died before receiving the service, were ineligible, or withdrew their requests. There was an overall increase year over year of about 15% in 2022 to 2023. 96% of recipients were in so-called track 1, where death is reasonably foreseeable, their median age, 77 years old, and more men than women. 4% of recipients were in what they call track 2, where death is not reasonably foreseeable, and the median age of that group was 75 years old and in that group there were actually more women

than men. Of the nearly 9600 people who responded to questions about race and identity, 95% identified as white, 1.8% identified as East Asian, and about 110 people identified as indigenous. And finally, a third of people in track one identified as disabled, and 58% in track two identified as having a disability. Okay, with all of those facts on the record now, let's just get some better understanding

of what's going on out there. James, maybe we could start with your just helping us understand the difference between track one and track two. Help us understand that. That's right. So there are a number of criteria that make you eligible to receive medical assistance in dying in Canada if you want it. The vast majority, as you indicated, are so-called track one. So these are individuals who have a serious and incurable illness. They have reached a point where they're in an advanced state of irreversible decline in capability

and they're experiencing intolerable suffering. And these track one cases are people where they say they have reached a point where their natural death is reasonably foreseeable. So that's commonly felt to be terminal illness, but it's not only terminal illness. So it could be people with a longer prognosis, but a clear trajectory towards death. illness, but it's not only terminal illness. So it could be people with a longer prognosis,

but a clear trajectory towards death. Track two, which is, as you indicated, the minority of situations, are individuals who meet all the other criteria, but they have not reached a point where they have a natural death that is considered reasonably foreseeable. So they have a slightly different set of safeguards, specialists that need to be consulted, and a much longer evaluation period of at least 90 days in order to receive MADE. Let me follow up on that last aspect with Sandy Buckman. Is there a difference in the way track one and track two people are assessed? Yes, there is, Steve. First of all, we have to understand which category they fit in.

Are they track one or are they track two? And sometimes that takes a little assessment. You may have an older person who you could conceivably say they are trajectory of death. The law does not state the actual time period involved, but that is definitely going down towards death, versus saying having more long-term chronic illness. And so we have to be able to make that assessment as to which

track that they fit on. So that takes a lot of discussion, a lot of diagnostic information. But other times, it can be fairly clear, OK, that this person definitely isn't on track one, and that we have to sort of assess and get the different kind of assessments that we do for track two in place.

For example, one of the clinicians who are evaluating the patient has to have expertise in the condition that you're evaluating. Or if they don't have expertise, they have to seek consultation, as well as there's a 90-day assessment period where you not only get those expert consultations, but you must inform the patient of all the options and get things like palliative care, support services, home services, disability services, etc. all in place during that 90-day assessment period, which is not the case in Track 1. Rebecca, let me bring you in at this point and ask you to draw, I guess, your main inference

from all of those numbers that I just laid forward there. What's your big takeaway? Well, one thing is just the increase that has continued year over year, where now as of 2023, the number of made deaths as a percentage of total deaths that year was 4.7%. And that's quite a far cry from the initial intention behind the Supreme Court decision, which talked about limited and exceptional circumstances. And nearly one in five deaths being from Maid is not limited and exceptional. And indeed, we now have the second highest rate of Maid as a percentage of total deaths in the world, second to only the Netherlands.

But we got there in about eight years compared to the decades it took for those international jurisdictions to get to that number. Let me do a quick follow-up with you. I mean, we're a country of 40 million people and we're talking about 15,000 deaths. Does that feel excessive to you? It really does. Again, if you look back at the Supreme Court decision, we were talking about limited and exceptional circumstances,

and what we're seeing bearing out from the numbers and the continued rise year over year is that this is becoming more and more normalized. This is not just another medical procedure. We need to remember that this was created as an exemption in the criminal code to something that would otherwise be against the criminal code. And so we need to take this very seriously

because this is a final decision. This results in the premature death of a patient. And so we need to look very seriously at how the system is working and question if maybe we need to do better. Sona, what's your view on whether 15,000 out of the 20,000 who applied is, in the words of Rebecca, excessive? So what I would say is that, and first, I want to thank you for bringing this nuanced discussion who applied is, in the words of Rebecca, excessive.

So what I would say is that, and first, I want to thank you for bringing this nuanced discussion to the audience, because made is not only one thing. Different people choose or wish to die for different reasons. And that's how I would start off by answering your question, because I firmly believe that some of those debts in that $15,000, most Canadians would think were wrongful debts that should have not been provided and were provided for reasons

they did not envision made to be provided for. And just following up on one of Dr. Vacheron's points, she mentioned the rapid growth that no other country has had in the short number of years since we've had made here. We've now, as of 2023, had more deaths by made than by COVID. And in terms of the question you asked about the numbers, it's important that your audience realizes this is not actually just for terminal illness. Track 1 has a very long potential prognosis of up to 10 years of life, roughly, is what it's seen to be.

We're not very good at guessing terminology for two or three years. We're terrible at guessing it for 10 years. And track two, as you know, has no kind of element of even being in the process of dying. And the problem, and I think we'll get to discuss this in a few minutes, the problem with all of that is that the problem, and I think we'll get to discuss this in a few minutes, the problem with all of that is that the further and further away you get from the process of dying, what we start to see is that life suffering, things like poverty, loneliness, and isolation, and other psychological traits and symptoms start to influence people's wish to die. So it becomes life suffering, rather than avoiding

a painful death, which is very different. James, can I get you to react to the statements of our last two guests? So I think there is a lot of focus on the numbers of people receiving MADE. I don't think that that's actually appropriate. First of all, we're seeing large growth in the use of MADE around the world in every jurisdiction that legalized it,

particularly since the start of COVID. And I think you're seeing fairly rapid growth in Australia. The Netherlands and Belgium, for example, had been quite stable at their numbers for a long time until COVID and then they've both taken off. So I think a lot of what you're seeing in Canada is the simple fact that we legalized shortly before COVID and that gives you that number. But the broader question of whether the number actually even matters, I think, is the core question. Maid wasn't about providing maid. Maid is about providing choice. So the question isn't whether it's two, three, or four percent, but whether it's 100% of people getting the care that they want and whether we are following the rules as they are set out in law.

And every piece of data we have suggests that that's the case. Sandy, are you troubled by any of the numbers here? No, I'm not troubled by the numbers. I think I can reiterate that Canadians have chosen to recognize autonomy as their prime value, the choice to do it. And I think there's a growth curve that's kind of reflecting Canadians' awareness of that choice and the expression of autonomy as well. You know, I think it's also expected.

We are an aging population. We're a growing population. We're suffering more and more with chronic disease. And so the fact that we're seeing this increase over time, which hasn't been a huge increase, but yes, fast, we're just in the early stages. We've only been doing this since mid-2016, so it really hasn't been all that long. And so, no, I think the fact that we have choice in Canada is a reflection of the choice that Canadians have made.

James, would you be concerned if more people were choosing to do made, not because death was certain or because they were in significant pain, but rather for poverty reasons, for mental health reasons, for loneliness reasons? Would that be a problem for you? Well, so those aren't actually, number one, those aren't the reasons outlined in law

that would make one eligible to receive MADE, secondly. And I think you're going to go into the data as well to show that that's not actually the reason people are getting MADE either. I think you have to recognize that poverty, loneliness, these are all major sources of suffering among Canadians. If we're concerned about those, we should be, and we should be focusing on ways to improve,

to narrow the mortality gap and the illness gap between Canada's wealthiest and Canada's poorest. We should be trying to support our marginalized communities a lot more than we currently are. But again, the idea that, and again, the data certainly shows that people receiving made are certainly not disproportionately represented among these populations, quite the contrary. And that comments like loneliness or self-perceived burden and things like this that people are flagging are actually as common or often more common among people who are not seeking AIDS. So I think that's really important to recognize.

Rebecca, can I get you to comment on that? I mean, the fact is it is not a provision in law that you are allowed to take your own life because you're lonely or because you're poor. So what's the concern on your part for that? Well, the Health Canada report does reflect the nature of suffering. The data collected shows that a considerable number, and I think one of the concerning things is that it shows that an increase over last year's numbers do identify social isolation and loneliness as a source of

suffering, as well as the perception of being a burden. We really don't know from the data how these play out in terms of ranking, but the fact that there is this social suffering that is part of what is recognized in the data collection process, I think should make us look very carefully at the supports being provided to people. And we do know that there are people receiving MADE who did not receive palliative care, who did not, who required but did not receive disability supports. And actually the number of cases of that in particular grew two times the amount last year.

Almost over 400 people were identified as having required but not receiving disability care. So all of these things again should give us pause and should, I think, focus our attention on alleviating the suffering before we are providing an assistance in dying. We need to provide assistance in living. Fair enough. But Sonu, let me make sure we're crystal clear on this. There's nobody in Canada getting made

because they're lonely or poor, is there? Yes. There are. There are. I think it's a bit disingenuous for it to be suggested that loneliness and feeling a burden are not fueling made requests when nearly half of the people, nearly half of the people on track two identify feeling a burden, nearly half of the people on track two identify feeling

lonely as suffering fueling their made requests. Over 40% on track one, by the way, identify feeling a burden. And over one in five on track one identify also feeling lonely. They identify that but that doesn't give them the right to do it, does it? But that's an artificial distinction you're making. And I think this is part of the dangerous reassurance that people have been provided by, frankly, what

I would call some whitewashing of some of the data. Because there are actually signals in the data that show people are being driven to seek made by those considerations. The one thing I would agree with Dr. Downer on is that the total number is not what the big issue is. It's the reasons fueling people's suffering leading to their made requests that we should be looking at.

Sandy, can I get you to speak to that? Yeah, absolutely. I mean, I actually couldn't agree more with the comments about intolerable suffering and how we have to address it. You know, when I hear a patient say to me, I want made, I actually hear them say, Dr. Buckman, my life is intolerable. Help me.

That's my cue to go in and investigate their intolerable suffering in all its domains. Physical, like pain, nausea, vomiting, psychosocial, cultural, the loss of being the caregiver or the breadwinner of the family. And of course, spiritual and existential suffering. So it's a key, and in assessments of any part, it's not just, oh, you want made?

Here you go. No, it's a deep investigation and addressing of their intolerable suffering. And loneliness, social isolation, many of these things are key. And particularly with marginalized people who are suffering with poverty or are with poverty or they're having housing, they're in a housing crisis, what have you. Food insecurity, yes, we do see that.

Those absolutely have to be addressed. And it's incumbent upon clinicians to begin to get all the services, mental health services, counseling, everything in place. Whether it's a track one or not, these things are common in the illnesses that we see. And as an assessor, I'm not granting eligibility on the basis of social isolation or loneliness or poverty.

Well, that's what I wanted to check. If somebody comes to you and says, I'm desperately depressed, I'm lonely, I don't want to live anymore, I want made, are you granting it under those circumstances? I'm not granting it under those circumstances until I've assessed what, if they meet the eligibility criteria. And remember, it's again about autonomy.

That patient actually has the right to refuse. They can be depressed, but if they have the absolute capacity to understand and appreciate their situations, then they have actually right. I might do my damnedest to try to get them that mental health care that they need, but they actually have a right to refuse if they have capacity to make that decision. Rebecca, do those sound like adequate safeguards to you? I really appreciate that there are clinicians

like Dr. Buckman who are going to those lengths to try and address suffering, but it's not what is required under the law and we really don't have the data collection through the annual report to ensure that that kind of investigation is happening and that those supports are provided. The law doesn't require patients to actually have tried

means to address their suffering, it just has to be offered. And when you're dealing with a system that has so many issues with availability and access and quality of care that has structural barriers for persons living with disabilities, that has structural barriers for those living with mental illness, it can be very, very difficult to meaningfully understand what those means of relieving their suffering could involve. If you haven't received proper mental health treatment, if you've been on the list for disability supports

for ages, what does it mean if someone tells you that you could have that? When? When is it gonna be there and what quality will it be there? So unfortunately, I don't think that the current situation really is working in that way and I think the voices of disability advocates and some of the really concerning cases we've seen in the media bear that out. James can I get you to speak to the issue of how confident you are that the assessments that are taking place of

people who want Maid are on the up and up? Well, I think there, again, it's one thing if somebody can ask for Maid, you can ask for things for which you are not eligible. That's part of why you have the safeguards and the assessment processes in place. What I've seen among colleagues and certainly my own involvement in Maid in the past, it has been, you know, this is what we do. You know, when someone comes in with a type of a suffering that you think is something you can address, you do your darnedest to connect them with the services required. I will say that in the federal report, they actually did specifically look at that among people not just whether they had access, but whether they had a type of suffering and where

the assessor felt that this person could have benefited from a service but did not have access to it. And out of 15,000 cases, as you pointed out, for disability services and for palliative supportive services, they identified five and six individuals out of 15,000 that they felt could have benefited from services and did not have access. Let's be clear, that number should be zero, absolutely should be zero. And I would have a lot of concerns in situations where I felt somebody didn't have access to a service that they could benefit from. But I think we also have to recognize, number one, that those numbers are spectacularly good compared to any country on the planet would be envious of those numbers for all people dying. And I suggest to me that by and large, I think our assessment processes and our safeguards are doing a very, very good job.

Certainly the number of made cases we can say that are related to inability to access services that could benefit people is an extremely low number if it is not zero. So, Nook, can I get you on that as well? How well do you think we are assessing that assessment process in general, is it on the up and up? So I think that most made providers are doing their best to do what they can to make these assessments. My concern is what the data and evidence shows, which is that despite their attempts, they're unable to filter out the very things that you're asking, whether or not they can be filtered out. So an assessor may not say I'm providing this for loneliness, but the point is that we don't compartmentalize suffering.

We respond to cumulative suffering. There's a concept called total pain, which Dame Cicely Saunders, who was a stalwart in palliative medicine, coined. And it reflects not just physical pain, but existential pain, psychological pain, social suffering pain as well. And what the reality shows is that we can't filter that out from these made requests, especially

for people who are far from having a terminal illness. In other words, people who are disabled and have more time to live. And what also we find is that those factors map precisely onto the same things that we know are suicide risk factors. You know, I think that it's important people realize some of the data being presented does not convey the full picture.

You know, the Ontario coroner, Dr. Downer referenced the Ontario reports, I believe. The Ontario coroner actually himself concluded in a presentation he gave last spring that there is a significantly higher number of people on track two who come from communities that have residential instability, material deprivation,

and dependency on track two. We also find that, as you pointed out at the beginning, more women than men actually get track two made. And we're seeing that more people are getting it for nebulous circumstances, like hearing loss and frailty, that are harder to quantify what is the full degree of suffering. So I don't think we have adequate safeguards despite the fact most providers do their best.

Sandy, I want to ask you about one of the numbers that jumped out at me, which was 95% of the people seeking this are white. What does that say? What does it say? It reflects, I think, a few things. If we look at the socioeconomic gradients and who gets made, and the white Caucasian population tends to be in Canada, more established,

and has a population of higher socioeconomic status, because we see people of higher socioeconomic status who are requesting made And people who are aware people who have more education that made Exists people who have greater control in their life Of their lives and those are the kind of individuals that are seeking to have to have made it's actually anecdotally, those that have less control, for whatever reasons they have, from systemic race issues to disability, who have less control, are asking for it less.

They're experiencing the social isolations. They're experiencing that. But the poverty, the marginalization, those other issues are not driving mate. And I'll leave it there for a moment. OK. Rebecca, does that mean, can I draw the inference that as so-called racialized Canadians become more socially

connected, become more economically advantaged, that we will start to see those numbers rise in those communities as well? That's a good question. I don't think that based on the data we have, we can come to any firm conclusions. The demographic data collected in the Health Canada reporting, they note themselves specifically that there are challenges and inconsistencies and different definitions. So there's a lot of caveats that come with that. But by and large, I don't think race should be fundamentally something that makes us feel better or worse about who's accessing maid because anyone who's approaching their death or who is requesting maid is in a really vulnerable condition. And so we do need to be ensuring that we are addressing

those sources of suffering that are driving those requests. And as Dr. Gain points out, might be driving those requests inappropriately. We hear a lot, and this is not from the report, but I think it's really important to consider the lived experiences of persons living with disabilities, to consider the voices of disability groups, including the coalition of disability groups and two individual plaintiffs that filed a charter challenge against the government this past fall, because they are arguing that track two is discriminatory against persons with disabilities. And we've seen these really difficult cases play out in the media. So I think we need to balance that data point that while interesting may not give us the full picture of some real issues of

concern. James, I guess it does introduce an interesting angle on this story, which is, you know, there is discrimination in many other aspects of society. Is there discrimination in terms of who gets made? I'll just pick up on a point that was raised earlier, though, about some of these measures of vulnerability and marginalization, because I think there's some data being misrepresented here. Both the Ontario data and the federal data consistently show very much the same thing.

So there are a number of metrics that are shown in both of them. So income, whether you're receiving government supports, education, racialization, and whether you're a newcomer to Canada, and whether you're dwelling is in need of repairs. By every one of those metrics, MAID recipients in both track one and track two are on average more privileged than the average Canadian. The average Canadian who has advanced illness, the average Canadian who is dying. So every one of those metrics is associated with a lower chance of getting made.

The only one that Dr. Gaines is referenced here, the residential instability actually has nothing to do with whether you yourself are stably housed or the quality of your dwelling. It actually relates to a metric about the neighbourhood you live in and whether people move in and out frequently. So any neighbourhood with a lot of seniors will rank as marginalised.

I'll give you an example, Toronto's Yorkville neighbourhood, which most would consider to be one of the wealthiest neighbourhoods in Canada, by that metric is actually considered one of the most marginalised neighbourhoods in Canada. I don't think any person would consider Yorkville to be a neighborhood of marginalization

or be concerned from somebody coming from that neighborhood. So we have to be really clear on what we're looking at with this data. When it comes to specifics, the coroner's reports also did look at individual cases and had a multidisciplinary panel, including people who were very much opposed to Maid and have been principally opposed to Maid for a long time.

And in none of those cases, they went over six cases that they felt were most emblematic of perhaps the social concerns, etc. And after review, they didn't conclude in any of those cases that somebody was receiving maid because of social issues. And in some cases quite solidly, we're saying that that was not the case. Certainly housing, in no case did they conclude that anybody received it because of poor housing. That's really important to say. The question of discrimination and the question of what disabled people and marginalized people

are experiencing, I think is very clear. We know that by every single metric of marginalization makes you, gives you a higher risk of death, a higher risk of illness and suffering across the board. That's well known. The problem is that every single metric of marginalization also makes you less likely to get made. So if we're gonna talk about the issues

that are really affecting people with disabilities, people who are marginalized, I think made is probably the last thing we should be speaking about. Okay, we're down to our last couple of minutes here and I guess Sonu, I wanna ask you, we've had made in Canada now for almost 10 years. Has it essentially unfolded as you thought it would?

I think we've fallen off a cliff. And the reason I say that is that, and you know, with respect, I have to say that some of the last comments from Dr. Downer, again, that's another whitewashing of the data, because in fact, the argument that people who have disabilities are likely to suffer more from certain reasons, and then they get made anyways, or that they're in some of these areas that the Ontario Coroner's Report does show that they come from, and they would get higher rates of MADE anyways because they're suffering

or would have higher rates of death. On track two, none of those people, not a single one of those people, would have lost their life if it had not been taken through MADE. They would have lived for over 10 years. So it's a fallacy to compare whether people in those situations would have died at higher rates anyways.

And in fact, that argument is indistinguishable, frankly, from eugenics. So I do think we've gone over a cliff because we are not properly making... And by the way, I am actually not a conscientious objector. I chaired my former hospital's maid team. And I would never have done that if I didn't agree with what most Canadians agree with, which is that there is a place for maid here. But what we have seen is actually activism

that has led to what I would call, it's almost suicide denial. Because in some cases, it is unequivocally clear that some people are being driven to seek, get made, and get made for traditional suicidality markers. And when we're talking then about expanding it to mental illness in a few years, you can just imagine what would happen. I've got to jump in there because that's our time. I want to thank the four of you for coming on to this program tonight to have a very

difficult decision about a very contentious issue, but I commend all of you for having such a civilized discussion about it. We're really grateful. James Downer, Rebecca Vachon, Sandy Buckman, Sonu Ghand. Thank you all very much. Thank you. Thank you, Steve. Thanks, Steve.

Thank you.