What is going on with MAID in Canada? Bill Gardner, Leonie Herx, & Sonu Gaind

Eric: Welcome to the GeriPal Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, we got a really important, interesting topic today. What’s up with Medical aid in dying in Canada?

Who do we have with us to talk about this topic?

Alex: We are delighted to welcome back to the GeriPal Podcast, Bill Gardner, who’s a psychologist, professor of psychiatry and epidemiology at the University of Ottawa. And he writes about his experience living with cancer at billgardner.substack.com. Bill, welcome back to GeriPal.

Bill: Thank you.

Alex: We’re delighted to welcome Leonie Herx, who’s a palliative care physician and clinical professor at the University of Calgary. Leonie, welcome to GeriPal.

Leonie: Thanks for having me.

Alex: And we’re delighted to welcome Sonu Gaind, who is a Chief of psychiatry and professor at the Sunnybrook Health Sciences Center at the University of Toronto.

Sonu: Thanks for having me in covering this challenging topic.

Alex: Thank you.

Eric: So again, the topic is going to be medical aid in dying in Canada. But before we go into that topic, Bill, I think you have a song request for Alex.

Bill: Yeah, I would like to hear Cortez the Killer from Alex.

Eric: And why did you choose this song, Bill?

Bill: Because I’ve been a Neil Young person since I was about 13, so what can I say?

Alex: Yeah, great Canadian singer, songwriter, band leader. I saw Neil Young perform this in Israel outside of the Jaffa Gate in the Old City in the Sultan’s Pool Natural Amphitheater. His backing band was Pearl Jam. It was amazing.

Leonie: That’s insane. Oh my gosh.

Alex: Amazing. At night lit up, people are sitting on the walls of the Old City looking in. It was just an experience. I’m going to play it with one finger on my guitar so it will not be the same, but here’s a little bit because my hand is still broken, listeners, those of you have been keeping track. Here’s a little bit of the song.

[Singing]

“He came dancing across water with his galleons and his guns, looking for the new world and that palace in the sun. On the shore lay Montezuma with his coca leaves and pearls, in his halls he often wandered with the secrets of the worlds.”

Eric: Nice harmonica, Alex.

Leonie: Lovely.

Eric: Alex. I imagine Alex in two years he’s going to have a harmonica, a guitar, a piano… You know those one man bands with everything happening-

Alex: I’ll kick drum with my foot. Yeah, exactly. We’ll see. And making most I can do, I can use my mouth even though I only have six fingers here. So figured out a little harmonica-

Eric: That was wonderful. So we’re going to be talking about this complicated topic that a lot of people have differing opinions to and potentially very strong opinions, medical aid in dying. I wonder, before we jump into some of this heavy stuff, maybe I can start off with you, Sonu. How did you get interested in this as a topic for yourself from an academic or a personal standpoint?

Sonu: It’s a great question and it actually reflects an unexpected journey as I think it does for many people actually, because it is not something which I entered medicine thinking that I would be getting heavily involved in. What happened is that firstly, in terms of my clinical background, my background is psycho-oncology, so that’s working with patients with cancer and their families, including when they’re going through periods. So being well and also potentially periods of dying. But that was separate from MAID. The MAID issue then came on the table in Canada after the 2015 Supreme Court ruling in Carter v. Canada. And in that ruling, it basically laid out the requirement that some form of assisted dying or a pathway for that needed to be carved out in some circumstances. And the Supreme Court gave the country a year to implement or introduce some form of assisted dying laws.

Eric: And before that it was illegal?

Sonu: Prior to that it was illegal and actually in the criminal code, so not only illegal, it’s actually a prohibition in the clinical code. And what the Supreme Court said was that the up until then blanket prohibition against any assistance in dying that, that was overly brought and breached by charter. And so they said there needs to be some mechanisms in some circumstances. And at that time I also was the President of the Canadian Psychiatric Association. And so in that context, knowing that there was going to be some evolution of policy in this area, that’s how I got involved consulting with members, trying to understand the situation better, that type of thing. So that was my initial involvement and then I’ve had much more since then, but I can discuss that. But that’s how I initially got in.

Eric: And Leonie, how did you get interested in this topic from a personal or academic perspective?

Leonie: So I got interested in it because of the confusion around what medical assistance in dying was with regards to palliative care. So there was a misunderstanding that palliative care shortens people’s lives and hastens death through the use of medications, which of course we don’t do. And in fact it’s a core tenet of palliative care that we don’t hasten death. But there was this expectation once the Supreme Court ruling went through and as legislation was being developed that palliative care physicians would be the ones providing this.

And I was on the board of the Canadian Society of Palliative Care Physicians at the time and moved into a four year term as in the president role during shortly after the legislation. So I had a responsibility to engage our members and to speak on behalf of the Specialty Society of Palliative Care to really help people understand what palliative care was about and how it was very different from medical assistance and dying. And then as similar to Sonu, became more and more involved in various ways through roles in testifying and providing expert testimony to the parliamentary committees, studying the legislation after it was enacted.

Eric: Well, maybe we can talk a little bit about what’s happening right now and then I’d love to turn to Bill just to hear from his own experience. But before we do that, so medical aid in dying in the US, so where I practice in California, it’s legal, although in a federal facility like the VA, it is not. And it’s when I think about medical aid in dying in how many states, probably around 12 states? I forget how many states have legalized medical aid in dying in the United States. It is for adults greater than 18 who have capacity, who have a irreversible and terminal illness. So less than six months to live. And there’s usually a little bit of a waiting period, although in some states that’s now shortening. And importantly the patient has to have capacity and they have to be able to take the drug themselves. So they have to self-administer.

Alex: Self-administer and psychiatric illness is not considered a qualifying diagnosis.

Eric: Yeah. So when initially this became legalized in Canada, was that a similar kind of definition?

Sonu: Can I jump in?

Eric: Yeah. Sonu, please.

Sonu: So I would say from the beginning and certainly now, and as time is passing even more is different in virtually every single way that you described, other than the fact that somebody is actually being provided that in some way.

Eric: Yeah.

Sonu: And the reason I say that is, even with the very first law that we had in 2016, there was no actual timeframe on a specific six month or two year period that somebody needed to be in a terminal situation. So it didn’t say that you need to have only six months or a year or two years left to live. It was much broader than that, it was categorized as, or described as having a reasonably foreseeable natural death. Now what that meant was actually quite broad. It was established over time, that meant even if you had up to about 10 years left to live, a decade you could fall upon.

So you can see that right off the bat that brought in all sorts of other stuff, including frankly things like age and frailty. And this is something that has happened that if people get to be a certain age, they can say, well expected lifespan is 10 years accepted. The other huge difference was this, that we were the only country in the world, the first and only country in the world that did not require the person to have actually had any attempts at treatment or access for treatment.

So every other country in the world, including the ones that people sometimes wrongly think were more liberal like the European countries, Belgium and Netherlands, even there, there was a requirement that the person has received due care and that their essential unit state of treatment futility. And in Canada we had a very different provision, which simply said that if the person’s suffering’s intolerable under conditions and can’t be treated under conditions they find acceptable, very different because it didn’t mean that it’s about whether someone’s had access or best care treatment, but the point is that it did mean that even if there were treatment options that could help but the person either didn’t want them or couldn’t access them is how it’s been taken, they could get MAID and if expanded even beyond that since 2016.

Leonie: And another big difference, if I may jump in.

Eric: Please.

Leonie: Between Canada and most of the states that have legalized it’s assisted suicide in the US. So we from the very beginning had an option of clinician administered medical assistants in dying or lethal drugs administered by either a nurse practitioner or a physician or self-administered. And like 99.8% of the cases in Canada have been clinician administered. There’s I think less than six reported cases of assisted suicide out of the 40,000 people who’ve received medical assistance and dying. So it’s a bit of a different scenario having someone do something to you under the guise of a medical procedure than self ingesting lethal drugs, I would suggest.

Eric: Can I clarify that? So let’s say you have to have a capacity to make that decision, right? So if you don’t have capacity, are you still eligible if somebody else…

Leonie: Yeah, so you have to request medical assistance in dying at the time.

Eric: And it can’t be a surrogate?

Leonie: It can’t be a surrogate currently. However, I would say that I certainly myself have seen examples where a person I have assessed to have a delirium and I would say they don’t have capacity, but it’s actually up to the MAID provider themselves to determine capacity. And there’s no requirement for formal training and capacity assessment. There’s no oversight mechanism if there’s a complaint, I’ve raised complaints before and asked for a psychiatry consult written in the chart, this person doesn’t have capacity and it’s just been dismissed and disregarded. So there’s some concern, yeah.

Eric: And do they have to have capacity when they get the medicine? So for example, if they lose capacity by the time they are… if somebody else may be self or giving them the medicine, is that okay?

Leonie: We had an expansion to our formal expansion to the legislation. We can talk about the informal and the formal differences in expansion later. In 2021 when MAID was extended beyond those who had a foreseeable death to those that didn’t have a foreseeable death, basically any chronic illness or disability. And at that time they removed a number of the initial safeguards. So a clause was a waiver of final consent is what they call it. So a person can enter if you have a foreseeable death into a verbal agreement with a MAID provider that if you lose capacity before you get your procedure, that a MAID provider can provide you the lethal drugs anyway. So it’s a verbal agreement that can be entered into at this point. Yeah. I don’t know if you want to add anything, Sonu?

Sonu: No. So the waiver for a final consent fees that was brought in as you mentioned in 2021. And again, what that means is that when the person qualifies for MAID initially when they’re having the assessment, at that point they need to have capacity, but if they lose capacity before getting MAID, they can still get MAID. And it’s somewhat different than what people, it’s different from what people think about as advanced directives, which is also being talked about, which is when people, even if they wouldn’t qualify now, would be able to say in the future, if this or that happens, I would not MAID.

Eric: I see.

Sonu: So that’s another layer to it that’s being discussed currently that’s not in the law.

Eric: Bill.

Bill: Yeah. One thing I would like to add here is both Sonu and Leonie presented this as something that lacks boundaries. And I think that you can actually see this if you view it as a public health issue for a second. In 2016 there were about a thousand MAID deaths, in 2021 there were about 10,000. And over six years, that’s a tenfold increase in effect about 60% a year, there’s no sign of it slowing down. I’m not aware of any other growth that explosive in any other jurisdiction and physician aided dying, assisted dying. And it’s in 2021, the number of people who died from MAID is twice the size of other suicides. So I think it raises a real question, all the considerations that Sonu and Leonie raised is, are these procedures just out of control in a way that put patients at some kind of risk?

Alex: I heard something like 2% of all deaths in Canada are from MAID-

Sonu: Oh no, no.

Alex: No?

Sonu: That’s a significant underestimate.

Alex: Oh.

Sonu: So in fact, the statistics that were just voted, those are absolutely correct about the 10,000 that Bill mentioned. We now do also have the 2022 numbers. So Bill mentioned 2021, the 2022 numbers came out, and I’ll get to what those are in just a second. But think about this as well. It’s bizarre because every other year our national numbers came out in the summer, spring or summer. So by around June. This year, they came out late October. No explanation why. And the reason that I’m pointing this out is they came out literally less than a week after Parliament voted on whether it would continue to expand MAID even further, this whole mental illness in 2024. It was bizarre and I don’t know why, but what the 2022 numbers showed was further increase to over 13,000 a year, and it’s at 4.1%, over 4% with some provinces being well over five, seven or 8%. So Quebec and BC have always been higher and they remain even higher.

And what we’re also seeing are, and this is despite the fact that they’re really not capturing data yet adequately in a way that would let people who are marginalized and poor for all sorts of different socially disadvantaged reasons are now getting made under our laws as well. But despite that, we’re actually starting to see some concerning gender gaps and other things appear in some of the numbers with more women than men getting [inaudible 00:20:56].

Now all of that I want to frame as something that I’m raising that I’m really concerned about despite not being an overall conscientious objector to MAID. So I didn’t mention this at the beginning, but after my time as President of Canadian Psychiatric Association, I actually also went on to be the physician chair of my former hospital’s MAID team. I wouldn’t have done that unless I thought that in some circumstances there may be a rule for MAID. But what it also taught me and what I’ve seen is that these expansions we’re having have gone so far beyond what anybody I think thought MAID would be that it’s really concerning. I testified in front of our parliamentary committee at the end of November this year, and I described it not even as a slippery slope, but a runaway train.

Eric: Well, I wonder if we can contextualize this. The last time we had you on the podcast, Bill, you talked about your cancer diagnosis and a personal experience with MAID, which you also, we’ll have a link to your blog post too about this as well. I’m wondering if you’d be willing to share your own experience with medical aid in dying. You’re on mute, Bill.

Bill: Yes. So I am kind of involved in this in two ways. First, I’m a public health professional and as I mentioned, actually a lot of my prior research career was involved in suicide prevention among children and adolescents. And it sensitized me to this issue. But the way I directly encountered it is that I have oropharyngeal cancer, the treatment has not been successful and I’ve been given a terminal prognosis. When the physician gave me that prognosis, they offered me MAID. And I guess I wouldn’t call myself a conscientious objector. I have a personal religious commitment not to do this, but like Sonu, I can readily envision situations where it would be appropriate for other people with other beliefs.

So the thing that struck me as concerning about my being offered MAID was two things. First of all, as I understand the Carter decision, two of the things you’re supposed to have in order to be a candidate for MAID are enduring intolerable physical psychological suffering that can’t be addressed under conditions you consider acceptable. This physician had never discussed my suffering at all. There was no communication on my part that was anything intolerable about my situation.

The second is you have to be in an advanced state of irreversible decline in capability as I understand the law. I mean, I’m no longer competing in triathlons, but I published 11 papers last year. I’m not in irreversible decline yet. And actually we had talked about that the guy did know, I was his colleague and an active scientist.

So this is kind of shocking in a way because it’s not being, I wasn’t getting this offer for any reasons that really related directly to the circumstances of the Carter decision as broad as they are, I think there’s an emerging standard of care unfortunately or possibly where people who get a terminal diagnosis with cancer are just offered MAID as a treatment option. And that’s I think quite a long way from where the kind of circumstances the Carter decision was trying to address.

Leonie: Well, I think in fact there’s the Canadianness Association of MAID Assessors and Providers, so these are the people who provide and assess people for eligibility for MAID. It’s not a professional association, but it’s more of an advocacy group because anyone can join this organization. They put forward a recommendation which has now been adopted by most of the regulatory colleges or it’s going forward that all physicians should bring up MAID when a patient’s not asking about it or expressing a desire to die just as one of the options if they might be potentially eligible, which as we’ve described, our legislation is so broad and soon even for mental illness as a underlying diagnosis that really anyone 18 and over that you see in your office would potentially be eligible for MAID. So we’re supposed to bring up, have you considered getting a lethal dose of drugs as an alternative to standard of care?

So I would say it’s actually we’re seeing this culture where it’s replacing the medical standard of care and in the context as Sonu described, you don’t have to have tried any other options, you could have a completely treatable condition and now as a doctor you’re supposed to recommend something which raising an option could be seen as when they haven’t even had an actual standard of care and exhausted other treatment options. It is just wild.

Eric: Can I push back on exhausted other treatment options real quick? Because in medicine as somebody who works in the hospital, there’s always other treatment options. There’s always something that may have a very, very, very, very small chance that it may prolong someone’s life, maybe help a little bit with their comfort. We may not bring those up, I mean we go to ECMO and all of these things that we do in the hospital or even chemotherapy, is there a small tiny chance. So I think the hard part about some of this is, is the wording, what truly is irreversible.

Sonu: So Eric, can I comment on that?

Eric: Yeah, go ahead.

Sonu: I think and first actually, and I will get to that, but Bill, thank you for sharing your experience because honestly when I’m picturing being in a room being told that and then somebody in a white lab coat saying, “Oh, and by the way do you want MAID as an-

Bill: Before you describe this, can I add one to my interaction here because I think it’s a bit relevant to your point. The conversation I had was basically the doctor was telling me the result of a biopsy to look at a possible recurrence. And so he gave me, I tried to say that, but it was a hearing, I guess I let it out. Gave me the fact that the biopsy had found renewed growth in the tumor, gave me his assessment that there was an operable, there was surgical option, that the chemotherapy and other medical options would not benefit me in his opinion and that I had a prognosis of less than a year in about a minute and a half. And then in the context of that discussed MAID.

Now I’ve been in medical schools a long time, I think I have a pretty thick skin about this stuff, but I was shattered getting all that bad news in a concentrated dose. And I can imagine people who are not civilians that would be even worse off.

Eric: Yeah.

Bill: That’s not a context in which I think you can talk about a decision like MAID in a kind of reflective, emotionally stable way. And I think that this notion that this is what you dump on a patient when you get these terminal things is really dangerous.

Sonu: I’m glad you mentioned that and Eric, I will still get back to your initial point because it’s a good question and it does need to be addressed head on. But Bill, to the point you’re making, it’s gone even beyond what you’re talking about because you’re talking about in the moment you’re reacting to the news and et cetera and somebody then puts this as something on the table, have you considered it? There was a case in BC a few months ago of a woman with mental health issues who had suffered from depression, chronic suicidality at times. She went to a Vancouver hospital seeking psychiatric help and while she was there the counselor starts talking with her forms actually an empath form, patient’s finding that helpful and then says, “Oh, and have you thought about MAID?” And goes on further to actually describe how some of her clients, the counselor’s clients had gotten MAID and how comfortable it was as a way of believing their suffering, which is remarkable.

Now this person actually went to the media with this, but think about that framing and Eric, this is how I bring it back to your question because I think the question you asked, it’s a valid one, but a somewhat artificial one simply because we’re not talking about whether everyone has to have exhausted every possibility. We’re not talking about, “Oh, is there some faint hope or miracle cure?” We’re not talking about that. We’re talking actually about whether people have even had what I would consider a society, the decency of society having offered them both access to care that could benefit them, but also a way to have a dignified life before talking about, “Oh, now we’re going to give you death with dignity.” And the reason I say that is, and we haven’t talked too much about this yet, but we only did reference it, the expansion that’s already happened in 2021.

So the 2021 expansion in Bill C-7 dropped the initial safeguard that death needed to be reasonably foreseeable. What that means is that since that time, people who have multiple decades left to live can get MAID. If you have any disability, you can apply and follow from. As Leonie is saying, there are some who are advocating that everyone should be informed of this as an option. Health Canada itself in a Health Canada model’s practice standard that was released after it was written by half a dozen people, many of whom are amongst the key activists for expanding MAID in the country, in that Health Canada standard they essentially say that if you have an adult who could qualify for MAID, unless essentially you already know, they wouldn’t want it unless you already know that it wouldn’t fit their belief system, you should talk to them about it. So that basically means anyone who’s admitted to the hospital as an adult.

Eric: And let me get this straight… oh, go ahead.

Sonu: So the question I’d ask for you Eric, is this. That in terms of the threshold we’re talking about, not about, well is there a perfect line that so-and-so should or shouldn’t be offered or get MAID? I think we’d put it aside which mistakes we want to make because as we broaden it more and more that line of what mistakes we’re making changes, is it that we think that some people who maybe should qualify for MAID but they can’t because there’s some safeguards, is that the mistake or is the mistake that well a whole bunch of people who we really think shouldn’t qualify can because we lack safeguards and we already have people in Canada who are literally saying that they’ve gotten it for things like poverty and social suffering. As it’s expanded further and further from death, it’s now bringing in life suffering as a reason for getting MAID. I think that’s a big mistake.

Eric: And let me just clarify. So it started off for individuals with a terminal illness. So again what that actually meant, it seems a little bit broader than the US. Then it went to just what is-

Leonie: Any chronic illness or disability issues.

Eric: Any chronic illness, independent of if you’re actively dying.

Leonie: Right.

Eric: And now is it including mental health, psychiatric disorders?

Sonu: Their plans are for it to expand in March to mental illness conditions. But the other thing is that even in terms of availability of options and this has now been established, it’s pretty remarkable to me that what say is the person just needs to be informed of the possible options available to them. And we have prominent providers who provided multiple hundreds of MAID who have said that if somebody is on a wait list long enough, think about this, somebody who actually could improve through care, but the wait list for care is long enough, they would qualify them for MAID.

And so now for March, 2024, the government still has said they’re planning to expand it for mental illness conditions. Question is the most common one that people get it for in Netherlands and Belgium where they allowed mental illness and there are huge problems there twice as many women as men get it in those situations, which should be concerning. But we will see. There’s a committe that’s been having hearings recently, so maybe they’ll come to their senses.

Eric: But I can see the argument like if you say this is eligible for people with chronic illnesses, it’s hard to say that, oh, mental health is not a chronic illness that people suffer from. So it feels like a natural iteration of where things went with the Canadian laws, which feels very different again than what’s happening let’s say in California.

Sonu: I do want others to respond, but I’ll very quickly 30 seconds give you three reasons why it is very different. One is, despite everything we’ve said, there’s still a legal requirement that it’s supposed to be a medical condition that’s irremediable, meaning one that we can predict will not get better. All of the evidence shows that for mental illnesses in individual cases of mental illness, we cannot make those predictions. We are right less than half the time.

Eric: But there are people with mental illnesses that don’t get better. I’ve seen very-

Sonu: But how do you predict it? This is the point. People think they can predict it, all of the evidence shows us they’re wrong more than half the time.

Eric: Okay.

Sonu: So more than half the time we will wrongly be telling somebody with depression they won’t get better and we’ll give them MAID instead and they would’ve gotten better.

Bill: I think that’s a very important point unfortunately and every generation there is another technology that’s going to make these predictions work. Right now it’s artificial intelligence, I hope. But I guess Eric had asked you for child and adolescent psychiatrists and psychologists, a very large part of one’s time is spent in an office with a 14-year-old girl saying she’s going to kill herself. It’s never been a thought you would help them do it. I mean, our commitment has been, “No, we really have to find some way to get you better.” And I’m not saying that we have to do this for all competent adults, but the presumption that this is an option with an equal weight as any other treatment option that a doctor would offer, just seems to me a very dangerous step.

Eric: Well, I think about the cases where you have, we’ve seen patients with severe depression, has been on every medicine known to man. He’s ECT ketamine, they’re still depressed, they’re losing weight, they’re not eating anymore and then they’re asking for, I mean I guess this is the problem with medical aid in dying and I’m falling into this trap. You call out the far outliers, but it’s those outliers that tell the story, that make the argument that we should do this. It’s like the Brittany Maynard of medical aid in dying here in California at least.

Bill: And I don’t know the answer. I always tell people that I’m not an attorney, I don’t know how to work with these problems-

Eric: Yeah.

Bill: Because of course whenever you try to draw a line, there’s someone right next to that line who it feels like you could make a case to move the bar just a little bit farther to include them and that would be the just thing to do. But what we’ve seen is that, that process does not stop. The bar just keeps moving.

Leonie: I think we’re really at a place now in Canada and I think Sonu is probably the most skilled that’s speaking to this where we actually don’t know who’s suicides we’re preventing and who’s we’re facilitating. I’ve had people come in who meet all the usual criteria for active suicidal plan, all the things you train in where you call psychiatry and that’s a person you’re going to admit against their will and if they don’t want to come in willingly. And I have actually had psychiatrists give my patient who’s like the MAID phone number and said, “It’s easier. This is a nicer way than doing it yourself.” That’s what’s happening here now.

Sonu: Well, and this is the second issue that I was then going to allude to. One is that even when some individuals think they can predict that someone’s mental illness won’t improve, what the evidence shows us is that they will be wrong more than half the time. That’s the reality. The other issue is separating exactly what Leonie is saying, which is we deal with suicidality when people have mental illness, there is literally no other medical illness anywhere outside of psychiatric conditions that has suicidality as actually a potential for diagnostic symptom of the illness. People can feel suicidal for different reasons, but there is no medical condition outside of psychiatric illnesses that have suicidality as poor symptoms caused by the illness. So the question becomes, can we separate that suicidality from people who are asking for MAID from poor psychiatric conditions? And the evidence again shows us that we do not know how to do that. We don’t even know if it’s possible to do that.

So there’s no evidence we can distinguish those different groups and there is actually evidence suggesting those groups overlap. So unlike when people get MAID for a terminal condition, you see other differences in populations when people get it for psychiatric conditions where it overlaps with groups who are traditionally suicidal as I mentioned that two to one female to male gender gap. You don’t see that with terminal MAID. You do see it with psychiatric and that parallels the two to one ratio of women to men who attempt suicide. When mentally ill most of them do not die by suicide and most of them do not try again, the obvious concern is are we converting that transient suicidality to a permanent death by MAID?

And what’s startling to me is that some of the people who are the strongest proponents for expanding, made for mental illness, they ignore all of them, all of it. It’s quite remarkable that in our legislation, so this was in testimony recently if you can believe it, but the issue of this gender gap, the expert who’s been most involved in saying that we can make these distinctions of suicidality, et cetera, who chaired our federal panel, she was asked if that gender gap concerned her and she said, “It does not concern me because no one knows what it means.” And that’s pretty startling.

The CAMAP association that Leonie referred to, the Canadian Association of MAID Assessors and Providers, they’ve developed and they got over $3.3 million to develop this curriculum. I’ve looked at their curriculum that supposedly teaches how you make [inaudible 00:42:47] and it quite literally in their module on mental illness and MAID they have one component that is also on suicidality and supposedly how you make these distinctions, it’s 10 slides. Of those 10 slides, five have content, and in there there’s absolutely nothing that can help you distinguish, make these distinctions. Why? Because the evidence doesn’t exist. Have bizarre statements in there along the lines of, well, it’s like a suicide assessment like any other type of thing. I can read you the actual thing if you want. I wonder it’s a false safety that we are telling people we can separate suicidality when we can’t for psychiatric patients.

Alex: I’m hearing so many deep concerning issues and it seems as though in Canada each time the question of, “Well, should we advance beyond this? Should we advance beyond that.” Has come up, it’s almost always moved in the direction of yes, we should advance beyond that and including more people in the definition of who’s eligible for people with disability pending for people with mental illness.

Eric: Pushing that line farther and farther.

Alex: Yeah.

Eric: Pushing the line farther and farther.

Sonu: Alex, that’s also been suggestive, meaning no lower age limit, mature minors.

Alex: No lower age limit to minors as well-

Leonie: Yeah.

Alex: Advanced directives-

Leonie: Yeah.

Alex: I think you said is something that’s being considered. You’re seeing population level changes in who’s dying by MAID of dramatic proportions and Bill’s raised some important troubling considerations about what’s the role of a clinician and shifting of their role from being one of somebody who tries very hard to keep their patients alive and relieve them of suffering, to potentially helping them end their lives when they’re asking to end their lives. Also concerns about access and that this is sort of one of the main arguments that keeps coming up.

Eric sent me a podcast I listened to this morning, I think it’s called the Human Rights Podcast, where they talked about a story of yet another issue we haven’t addressed. A person who was afraid he was going to lose his housing because he couldn’t afford to pay the rent and was requesting MAID on that basis, didn’t ultimately receive it, started a crowdfunding campaign and got enough money to support himself and was grateful for that support. But just where is this headed? What is the tenor of the discussion? People in firmly entrenched positions not listening to each other. I’m grateful that there are people like you all who are deeply ambivalent about MAID, who are engaged in these discussions. What do you see as a way forward here?

Sonu: Alex, can I very briefly just, I actually have some hope I have to say despite all of this, I don’t want it to all seem like doom and gloom. I honestly think that a lot of this has progressed without people really knowing what’s going on. It’s been driven by a small group of ideological activists in my opinion, that’s become narrower and narrower over time. They’ve developed a bit of an echo chamber, but quite honestly, as people learn about it, a lot of people realize this is not what I thought it was going to be, especially with these expansions. And I think that there is a chance that some more caution does start to be introduced. I’m hopeful for that.

Bill: Yeah.

Eric: Bill, what were you going to say?

Bill: Yeah, well, I wanted to add one more thing. I want to say one thing about Alex’s question, but one other thing to have in mind here is that to some degree MAID might be happening because people can’t get access to good palliative care, which seems to be relevant to your podcast. And I think that there’s a lot of failure to get good information about the degree to which this is true. If you look at the reports that the Senate of Canada gets, it suggests that everyone’s gotten palliative care or many, many, many of these patients. Now, I don’t know if that just means that their oncologist gave them a Dilaudid prescription and that counts as having palliative care. But if you actually look at the number of palliative care physicians in the province of Ontario and look at the number of people who are newly diagnosed with cancer, the possibility that there’s adequate access to good palliative care is just very remote.

And that unfortunately part of our obstacle here is that like many, many, many other jurisdictions, we are unable to supply adequate mental health or palliative or geriatric care to the populations that need it. And to some degree, unfortunately there is pressure on the system to have a safety valve for that. And unfortunately it’s becoming made, which gets rid of all these problems in a kind of irrevocable way. So I think that that’s, even though I kind of think Sonu could be right, that people are going to be shocked when all of this sinks in, there’s a lot of pressure on the system to make it keep going.

Eric: Yeah.

Leonie: There’s so much pressure, but frankly MAID is cheaper, right, than providing people with the resources to live. And I appreciate your points about palliative care, obviously I’m a palliative care physician and it is shocking how little access there is to palliative care in some regions, and especially for some populations who you could say are most impacted actually by this type of poor legislation. The most marginalized in our society have the fewest access to resources and are going to be at most risk of a wrongful death. But there’s lack of access to disability services. Our own minister of disability inclusion during those federal panels said in some places in Canada, it’s easier to get access to MAID than a wheelchair, housing, all this stuff, and yet MAID is being proactively offered and accessible at a differential rate. It’s very scary.

Eric: I guess one question for you, I know we’re coming to the end of the hour is in California, we’re actually not seeing the numbers are I think 2021, we had 400 deaths in California the year before that in early around 400 deaths. We’re not seeing the slippery slope in California yet, but it’s been around as long as Canada, 2016, California-

Bill: And it’s also a comparable population. There’s about as many Californians as there are Canadians. So 400 versus-

Eric: 400 versus over 10,000.

Bill: Yeah.

Eric: So is it just how the law was drafted, is that the protection? Why are we not seeing that?

Sonu: I think it is two things, Eric. One is definitely the safeguards that makes a huge difference. And in Canada, a lot of what we’ve had are reassurances but not safeguards that not the same thing. The other is, you do have to think about whether there’s a cultural element of this being pushed as something that’s more and more acceptable even now under our current laws, one third of people identified that feeling of burden on family was actually one of the motivating factors for getting MAID. So think about what that sends as a message societally. And last point I’ll make is that there’s a movie called Plan 75, that it’s a Japanese movie of the near future Japanese society. I recommend that your listeners who are interested watch that because it actually outlines the different things on a societal level that might push some people’s levers for considering something like MAID.

Eric: So real quick, Alex, can I have one more minute, two more minutes.

Alex: Well, it’s up to our guests.

Eric: Guests, are you okay? Two more minutes. All right.

This is the magic wand question. If you had a magic wand and you’re thinking about medical aid in dying, what would you do to, I won’t say fix what’s going on in Canada, but change what’s going on in Canada in respect to medical aid and dying? That could be abolish it completely, that could be loosen it more, whatever it is. Sonu, I’m going to start with you.

Sonu: I would put the brakes on any further expansion right now, number one. That’s the first thing I would do. Number two, I would make sure that what we’re providing it for is the honest reasons we say we’re providing it for. Right now, it’s been over medicalized to, frankly, in some cases pretend it is being provided for relief of a medical condition that don’t improve. And the thing that then also is required for that is to understand why people are actually getting it. And different people get it for different reasons in different circumstances. And I think we need to understand that including whether there are things like poverty and marginalization and disenfranchisement and feeling a burden on society and ageism as things that are fueling it for some people. And we need to understand that by tracking the data and we need to be honest about what we’re giving death for, especially if people are not done.

Eric: Thank you, Sonu. Bill, do you got something you want to use a magic wand on?

Bill: Sure. What Sonu said, but also perhaps ratcheting back some of the expansions and seeing if they could be re-implemented and whether we could get back closer to the cases that the original Carter decision was intended to address people with ALS, for example. Also, as a psychologist, I think we need to look very carefully at the kinds of processes and conversations that surround this thing to try to understand how people come to these choices and how we can present the options to people in a way that allow them to make a truly rational and reflected decision about this. Suicidal people are prone to impulsive decision making because they’re very frightened about their circumstances and their inability to control what’s happening. We have to think of procedures that address those concerns, I think people can become victim die by suicide without mental health problems, simply because they’re in desperate circumstances and they see no other way out. And that we should really be concerned about this in discussions of MAID.

Eric: Thank you Bill. Leonie.

Leonie: I have three quick things if I may, that I would love to wave my wand about. The first one is I would want the general public and healthcare professionals to really understand actually what natural dying and death look like. Because a lot of this has been driven by fear, that’s not founded in fact. And most often, natural dying and death are very comfortable and what palliative care actually can do because I think part of that is what initiated all of this. So that would be wonderful. And to have people to have access to care, to focus on living would be a huge piece. Because of that, people feel a burden because they don’t have that community support and sense of responsibility of caring for one another that we’ve come so far away from in this ultra autonomous view of personhood, which I think is missing.

And then the last thing would just be, actually, I think it should be completely separate from medicine. This totally undermines, we don’t have time to go into this today. The role of the physician in advocating and responsibility for healing and recovery. And it totally takes away, that interrupts that physician patient responsibility. So I think outside of medicine would be really critical.

Eric: Well, I feel like we could have talked for another several hours on this subject. There is so much more to talk about, but I want to be mindful of our time. Alex, you want to end us with a little bit more Neil Young?

Alex: (singing)

Eric: Sonu, Leonie, and Bill, thank you for being on the GeriPal Podcast, really challenging topic. There’s so many different sides of this and I think it’s worthwhile continued discussion. So again, thank you very much.

Alex: Thank you.

Bill: Oh, it was great. Thank you.

Leonie: Thank you.

Sonu: Thank you all.

Eric: And Bill, another big shout out to you, and thanks for sharing your personal story too.

Bill: No problem at all.

Eric: And thank you to all our listeners for your continued support.