MJM MedTalks
Medical Assistance in Dying (MAiD) Part 1

0008 Masha Samuel (MS): The McGill Journal Medicine, MedTalks is a podcast series where members of the McGill community and beyond are interviewed on topics related to career, research and advocacy. My name is Masha Samuel, I'm a master's student at McGill University, and in this two-part episode, we’ll be exploring Medical Assistance in Dying or MAiD from the perspective of Canadian healthcare. These episodes touch on topics of mental illness, death and suicide, and we understand these subjects may be distressing for some audience members. So please, listen to these episodes with care, and if you need support, consider reaching out to a mental health professional.

MAiD is defined as the process that allows any eligible individual to receive assistance from a medical practitioner in ending their life, permitted by the criminal code of Canada to take place under specific circumstances. In this episode, you'll hear about the process of accessing MAiD in province Quebec, primary reasons why patients request MAiD, and perspectives on research in this field.

At the end of 2015, Quebec became the first of any Canadian province or territory to legalize MAiD. The rest of Canada followed shortly, passing a federal legislation in 2016 that allowed eligible adults living anywhere in Canada to access MAiD. One of the initial conditions for a patient to qualify for MAiD required a reasonably foreseeable death. Today, this path is known as Track one. In 2021, the Canadian government expanded the eligibility criteria, allowing individuals whose natural death was not reasonably foreseeable to access MAiD. This path is known as Track two.

Today, we'll be hearing from two Quebec-based healthcare professionals involved in MAiD. Dr. Blair Carl Schwartz is an Associate Professor in the department of medicine and critical care medicine at McGill University. He's an attending physician at the Jewish General Hospital in Montreal and has been providing MAiD since its 2015 legalization in Quebec. He is the in-hospital Resuscitation Team Lead and chair of the Internal Medicine Morbidity and Mortality committee at the Jewish General Hospital. He earned his medical degree at McGill University where he continued on to complete his residency and fellowship training in General, Internal Medicine and Critical Care Medicine. He received his Master of Health Sciences in Clinical Investigation, from Johns Hopkins.

Veronique Fraser is an Advanced Practice Nurse for MAiD. Previously, she worked as a clinical ethicist at the Centre of Applied Ethics at the McGill University Health Center, and as an Emergency Room nurse in the Montreal General Hospital. She has completed Masters degrees at McGill in both Nursing and Bioethics. She is a member of the Commission on End-of-Life Care, the provincial body that oversees MAiD in Quebec. In 2023, she won the Prix Florence for collaborative practice in nursing. She is co-chair of the Groupe Interdisciplinaire de Soutien which supports and oversees MAiD at the McGill University Health Center. She is also part-time, faculty lecturer at Ingram School Nursing.

Veronique wanted us to note that the opinions she expresses in this podcast are her own, and do not represent those of the Quebec Commission on End of Life Care.

Welcome Blair and Nicky, thank you so much for joining us today. The first question that I want to ask is, can you tell us how and why you got involved with MAiD? And maybe Blair we can start with you.

0343 Blair Carl Schwartz (BCS): Sure. So um, I grew up in a healthcare household. I was raised by a nurse, I sort of, you know, grew in the hospital and I've been following MAiD since the beginning. I remember, being a young teenager and discussing the Rodriguez Case in the nineties with my mom always was a big believer in the fact of patient autonomy, and, you know, quality of life and the concept of good end life was instilled in me, in my youth, and the concept of dying with dignity has something I believed in for a while. And so when this dossier became legal and really de regard in clinical practice in 2015 on my hospital, over at the Jewish, put out a call and said, we're looking for doctors to be involved in this, and I did nothing and, you know, said listen, I got a other stuff to and initially that whole kind of someone-else-will-do-it mantra. And then, about a week later, when the second email went out, it became imminently clear that nobody else was going to do it. My mom always said, Blair, “if you believe in something, you got to put money where your mouth is”. And so here I am nine years later. And it's something I believed in from the get-go. I saw it as part medicine. I never saw it as something that was outside. It wasn't, you know, taboo it was, I always tell my patients, you know MAiD is, you know to certain people like a cast is to a broken arm, an antibiotics are to pneumonia it's part and parcel of good, medical care and I have believed in that since my childhood, it's how I was raised and so when I given the opportunity I jumped and here I am.

0509 MS: And Nicky?

0511 Veroniue Fraser (VF): Yeah, my story is slightly different, I guess I, as you sort of said in my bio, I have a background in a nursing and in ethics, and in, I think it was it was like 2020 the MUHC decided to establish a position to have an advanced practice nurse to help sort of establish the medical aid in dying program here. And it's sort of appealed to me as a rule because I thought it would, you know, it was nice to combine my clinical background with something that sort of had an ethics dimension that was multifaceted and in terms my practice, so working with multi-disciplinary teams and policy protocol development, working patients and families, which I really like and a bit like Blair said, this commitment to, I think working with people at what is fundamentally a very vulnerable and precious time in life and to be able to accompany people and support them through that seemed an enormous challenge and a gift, and so, I jumped right in and I've been sort of involved with the MAiD service here now for the past three and a half years.

0613 MS: In brief, what is the process of accessing MAiD like in Quebec?

0619 VF: Quebec is interesting because it's slightly variable I think depending on which region you're in, and if you're sort of in the tertiary hospital setting versus in the community, but to keep it fairly simple, it’s, it’s, MAiD starts with listening to our patients and having honest and open conversations about options at end of life. And if a patient signals they want to make a request, then they inform a member of their healthcare team. Usually, they sign a form. And now, it's sort again, it depends where you are, but there's sort of often, it gets sent to sort of a MAiD contact person who then has a team of providers, usually, sort of doctors and now nurse practitioners, but up until last summer, it was doctors only who specialized in MAiD, and those are the positions that tend to become involved as the MAiD providers, and we start the evaluation process.

0713 MS: What is the evaluation process like for our listeners?

0717 BCS: Yeah so, I'll take that, so, you know like Nicky was saying, it starts a request and it with starts with being open and it starts with hearing. And then, once that request is sent to the coordinating centre, and again, as was mentioned, very different, if you're looking someone's followed a tertiary centre, it may be different in rural areas, but again every CIUSSS, or every CISSS in the province, has an obligation to have infrastructure in place. And so, what will happen is, once that request is received, we’ll adjudicate the urgency, is this something that something needs to be done very rapidly? Is this something that, you know, we're more of a Track two, we have a little bit more time and then coordinating service will on a call find a first assessment. And so, the law requires two assessments traditionally, the first assessor is the one who will do more of an in-depth session, really meet them start, a rapport. So, when I’m doing the assessment, I'll review the medical chart ahead of time, kind of get an idea of what the what the general medical condition is, what is the principal diagnosis leading to eligibility. I'll meet the patient and or any and all visitors that they want. So, I always encourage, you know, the patient can have family friends, whoever they'd like, really limited mostly by the size of the room, and it's up to them to invite whoever they like to be there. And it really is, you know there's some bureaucracy. There are some very clear questions I need to ask, I need to assess aptitude, I need to ensure no external pressures but really, it's exploring the why. It's, you know, what has happened in their life? Why now do they feel that they are suffering? I explore their physical suffering. That's what we generally think about, right? And I mean people view MAiD as intractable pain or intractable trouble breathing or nausea, it's almost never entirely that. In fact overwhelmingly, and I’m sure Nicky can attest to that really, what a of listeners may not think is you they it's the person who can't control their pain or that person who's so breathless that every day is burden. In fact, it's really in my experience more often than not the loss function. The asthenia, the not being able to get out of bed, the new functional dependency, you know I can't go visit my grandkids, the, I now need an orderly to help me wipe my bum. It's that lack of dignity and not so the physical suffering, but really the psychological suffering about the loss of independence. So I spend a lot of time exploring that and I start off, really by introducing myself who I am and then finding out who they are. Okay, and you know, where were they born and what did they do? And what were the things that gave that individual meaning and pleasure and joy in their life and then find out how their current medical condition, the disease, the functional limitations have compromised that and I start to explore, why is it that for you now, life is a burden, life is suffering and I’ll often say things like, you know, how would you describe your life as you now know it in one word and I'll look in their and I'll see, I’ll ask you say, hey, listen, if you went to bed tonight and died in your sleep, what would you think about that? And they'll often look at me smiling and say that’d be a blessing, doctor. And, you I'll things like, you know, would you agree that you would be better off dead than living like this? And I look at their eyes and I look at their soul and I see what they say. And then really, it's, that's how the process goes. And then, you know, I'll get a feeling whether or not they meet the criteria, I mean there are, you know, legal criteria set out in the act respecting end-of-life care. And if they've met that, then I'll transition my assessment to talk about the process and say, all let's do some nuts-and-bolts logistics. Let's figure out the dates, let's figure out time. I'll always say, listen, you as the patient can invite whomever you'd like, there are two people by law who must be there, the patient and me. But again, size of room, you can bring whomever you'd like, we can play some music, we can do some, you know wear whatever you’d like, wear a Canadians jersey, awesome. Let's put that on. You want to last smoked meat with somebody named Schwartz? I'm down with that too. And so that's really for me how the first assessment goes. It's about an hour, hour and a half on average depending on how the patient is, but we're really trying to understand the why, okay, we've figured out the disease and the medical stuff. There's very little medical questions, right? I mean we don't take a past medical history or stuff like that. I can read a chart. So that's really for the, you know for your listeners Masha, what the first assessment, as a MAiD assessor, actually is involved.

1123 MS: Are there mostly straightforward cases or are most cases complex and muddy in terms of your decision process?

1133 BCS: Um the good news is that the overwhelming majority of the time, it’s pretty clear beforehand and before I go into the room, I'm sure Nicky's got a similar experience, we can usually tell before we go see them a whether or A, whether or not they're to be eligible, I mean there's always surprises, right? We don’t go in, we definitely don’t go in having made our minds up. I want to be very clear, I don't go in going, this is a slam dunk, but you, you've read the chart, you generally have an idea. And then, you know, the ones that are going to be a bit more iffy. The ones that are going require a bit of digging, the ones that are kind of borderline in terms of criterion, and sometimes we need to call other people. So I'll sometimes speak to the patient's nurse. I'll speak to some of the other consultants, some of their social workers, some of their physical therapists prior to seeing them just to get some ancillary information that doesn’t appear in the chart. But I, I'd certainly well over 90% of the cases that I'm seeing, there really isn't any major doubts or concerns or complexities before, it tends to be pretty straightforward although, as the law expands, that’s certainly going to change. I’m sure Nicky has got the similar experience over at her centre.

1239 VF: Yeah, but to add, I would say that, I mean, again, without oversimplifying, MAiD is, we tend to think that, as Blair mentioned, it’s Track one or Track two, so is your death naturally foreseeable or not. The ones that I find tend to often be a bit more complex are the Track twos where death is not foreseeable and you might have diagnoses where you're looking at things like is macular degeneration a grave and irremediable illness? Is fibromyalgia? Is chronic Lyme disease? They become quite more complex. But if you look at our stats, think the last report in Quebec only about five percent of our total requests were Track two. So again, the vast majority of what we see are the more straightforward in a sense, clear diagnosis, clear decline Track one type of cases.

1326 MS: In your respective hospitals, is there usually a MAiD team or are there simply some healthcare workers that perform MAiD or are involved in MAiD and others that are not?

1338 VF: It's an interesting question because again, I think there's a lot of heterogeneity, a bit across Quebec. I can tell you here at the MUHC, the way it works is sort of way we think about MAiD, is that it is now part our Healthcare Act, it is a positive healthcare right for patients to request MAiD, not to receive it, but everybody has sort of a right to be, to ask to be evaluated to be heard to be listened to have appropriate end-of-life care. So we, the way we think of it is MAiD as a collective responsibility that is shared by treating teams. And so, every treating team, every member should be able to respond to a request for medical aid in dying respectfully, compassionately, and know the basic steps and terms of follow-up of request. That being said, I think when they designed the law, the legislators had this idea that you would go to your doctor, who you had close relationship with, your close family physician and say, Doc, you've been following me for 20 years, I can't do this anymore, and the Doc would say, yeah, you meet criteria, I'd be happy to accompany you. And I think what's happened is that while most physicians, and I think NPs too now support the idea of MAiD, not everybody's willing to provide it. So, what has happened in actuality is, well, we ask everybody to sort of respond to MAiD requests, to at least be part of maybe the second evaluation, we have a group of sort of specialist doctors that, like Blair, have volunteered to step forward and provide this care act. So, in that sense we do have a bit of a specialized team in terms of who does those sort of first assessments or who provides, who will actually administer MAiD. But otherwise, I really try to push and sort of, to use a francisme, like “responsiblize” are multi-d teams, that we all have to be responsive to this.

1524 MS: What about at the Jewish General?

1526 BCS: Yeah, it's pretty it's pretty similar, right? And I agree with Nicky, and think the intent was always to have that longitudinally, right, that you saw your own Doc and then called in a second opinion, but really, the evolution of that has not been the case. It is a vast minority of physicians and nurse practitioners, although that sort of starting to ramp up as legislation has his way through, who are comfortable doing the first assessments that require the administration of the Medical Aid and Dying. And so, you know, all, most of the centres that I'm aware of in Quebec really a, you know a cadre of doctors who have agreed to do that first assessment are established. And so, at our centre, our coordinator knows that there's a group of people who will do the assessments in-hospital. Those of us who may, or may not be willing to go to the community and then as these requests come in, they’re triaged out, and we've got secure emails to say, all right, who’s available to do this assessment, needs to be done within a week. So, in terms of, is a MAiD team, I agree with Nicky completely. You know we have our multidisciplinary team, all members of the team are in-hospital, in our CIUSSS, in our community are encouraged to discuss it, support it, explore, help provide all aspects of the multidisciplinary approach. But in terms of the actual assessments, it really is a small team of physicians who have agreed to do so and then with an ongoing and very promising expansion to our specialized nurse practitioners that really hasn't yet started in our centre but is very much something we're looking at exploring.

1653 MS: Have you seen a drop off in your colleagues or the number providers in the hospital as we've shifted from track one to track two?

1701 BCS: Not at all, I mean at least at our centre and I don’t know it's working the MUHC, but we, we started off with one doctor for many years who may or may the person speaking, and then we had a you know a really nice expansion. So, in fact if anything in my experience you know as this has become more and more accepted as the, everything's been more concretized as it's sort gone out from the shadows of, you know, kind of this weird little morass where it's kind of okay in Quebec, but the federal government hasn't yet amended the criminal code, you started to see people realize that hey, you know, it's actually being accepted, these doctors aren't you know, being vilified in the media, they're not going to jail, there isn't this wide outcry that really in the beginning, if you know, if you remember back in 2015, there was fairly staunch opposition, right? And there were physicians in Quebec who were saying, we're gonna find out who's doing this and we're gonna, you know, report them to the news and we're going to report them, and, and we're going to fight this publicly. Since those early times, really, it has become much more accepted. Quebec statistically now, and again, I think this is a good thing, does have the highest incidence of annual death by MAiD in the world. And I think it’s reassuring that while that number has continued to grow, and as the numbers continue to go, consistently, both the Commission for End of Life Care as well as the College of Physicians and the CIUSSS who review all of these, you know indicates a very, very high percentage of compliance. And so while there's significant growth, you're not seeing this expansion that is concerning and people are bending the rules and that people are receiving it who wouldn't otherwise be eligible. But certainly, I have not seen any significant pullback from my colleagues as we've expanded from only reasonably foreseeable death to the what we call track two.

1849 MS: Blair, have you had any experiences with doctors or your colleagues who are very much not comfortable with MAiD as a whole not just being involved in providing it but also in providing referrals or discussing it with patients as an option because I'd imagine there are doctors who are not. How does our healthcare system deal with this? How do you deal with this considering MAiD is, is legal in Quebec?

1914 BCS: So, the short answer is, yes, I have. The good news is that not in a long time. So really in the beginning, things were really unclear. There was significant opposition to medical aid in dying by large segments of certain specialties in the healthcare system. And so, I had a couple of cases of colleagues where it sort of came to my attention that they were following patients, at the end of their life. And that when the patients had verbalized an interest in exploring it, some of these physicians were, you know, actually, quite demeaning sort of saying, why would you possibly consider something along those lines? And, you know, actively did not facilitate the requests and that was really troubling, concerning. And, you know, I think it's important to understand that across the healthcare spectrum, you can have a variety of different opinions upon that. I think that's the beauty of a democratic society, is that, listen, it's not for everybody, it's not for everybody to do the assessments to, to provide it, to be involved in it, but as you pointed out, it's a legal right of all patients to have access to it. And so, very early on when it came to my attention, that patients were not having access to it, the good news is that the administration that at my centre really took that, that matter very much onto hand. And I sort of said, listen, you know, I've heard this is happening. It's not for me to go ahead and police this. I'm not the MAiD police but, you speaking towards our Director of Professional Services reached out, and spoke to the clinicians who are involved and said, listen, nobody is forcing you to do MAiD. Nobody is insisting that you be the one to escort them with it and cancel them on it. But you got an obligation to make sure that they can access their rights and so very, very swiftly. And I am happy to say that while there was initially, and I’m curious to hear from Nicky, how things evolved at MUHC, some of our colleagues in palliative care were initially very, very reticent about it, and sort of had some concerns that MAiD was inconsistent with the ethos of palliation. And it sort of kind of seemed you we had to choose one, you it's either it's either MAiD or palliative care. And now really, I'm happy to say at least in our centre, and I think probably true at many centers, it gets incorporated into good end of life care, not instead of it. So, I've dealt with it in the beginning, it was, it was awful. I mean, really, it was very, very, very hard to deal with. I remember I had a palliative care nurse who was following the patient and, and she felt exceedingly exceedingly handcuffed when, you know, she wanted her patient to be able to do it, but felt blocked by, felt blocked by a physician who was really putting personal beliefs and values to that, but think really as it's evolved, I haven't had any issues now, for probably going on last five six years and I think we're getting more, more uptake and I hope that that's not isolated to Jewish. And that really tends to the other centers.

2202 MS: Nicky, this question is for you, have you had experiences with family members who are against their loved ones choosing to receive MAiD or patients who don't want to let their families know that they're choosing MAiD. How have you dealt with any these situations? Can you talk about your experience in them?

2219 VF: I would say, I mean MAiD is like any death, right? We talked a lot about MAiD, it gets so much attention but I, you know we have to remember that it's just as unique and different as any individual death. So, we're going to see all sorts of different ways it can happen in terms of family, disagreement I mean, Blair, I'd love to hear your experience, but it’s, I would say, overwhelmingly supportive. It's rare that I get families that are antagonistic or fighting their loved ones. In my experience, what I do see is I find there can be this like, polemic discussion about MAiD sometimes or other people are really against it, sometimes there's this like romanticizing of MAiD, and I feel like the lived experience and we're starting to see that a bit in the literature, there was an article that came out a years ago where they, where they interviewed family members who described it as sort of a bit of a double-edged sword. And that's what I see with sometimes with people is that they want their loved one to be free from suffering, right? And they support that, and they want them to have this beautiful peaceful death, that is on their own terms that going give them this dignity back, but at the same time saying like, I don't want to lose the person I love most in the world and I am holding so much anticipatory grief, and it is hard to know that the person you love is going to die for Friday at two o’clock. It's a very unique experience. So, I think as much as there's, there's support, there's resilience, there's accompaniment, there's beauty and being able to share those moments, tell those stories, choose the music, all of that. It can also sometimes be sort of a heavy and singular experience for families to go through. So that's one of the things that I'm happy that the MUHC had sort of delegated a role, it’s that's part of my role is to accompany people that are experiencing through that and going through that, and in terms of people not wanting to tell their family members, it does happen, it doesn't happen often. But when it does happen, it can be fairly intense. For example, I had a patient who was imminently dying from metastatic colon cancer. He had about a month left to live and he had his parents that were with him all the time. And he for MAiD when his parents weren’t in the room and you know, he didn't want to tell them and he sort of said, no, no parent should have to watch their child die. And you feel that and legally, patients, and I want to be super clear about those patients, have the right to confidentiality when it comes to MAiD, right? If a patient does not want anybody else to know, as healthcare providers, we have to honour that, that obligation and it's interesting if you look at the law when the patient dies, the death certificate will never say medical aid in dying on it. It will say the underlying cause that's precipitating the request for MAiD because that, that's a public facing record and they're really, we're really going to protect their privacy. So legally, the obligation is clear, we can't disclose that information, but more morally, ethically, it can be really troubling for those physicians, those healthcare providers that are sort of accompanying the family and the patient and feel torn between well, what are we going to say? Are they going to feel betrayed? How are we going to respond to that? So, it can be quite heavy. I found just slowing down, listening, taking time with your patients. Why don't they want to tell people? Sometimes there's fears, sometimes there's anxiety. Sometimes it's protection as they don't want to put any grief or burden on the people they love. So, just really exploring accompanying and, and again, I found that often throughout the course, people will change their minds. For example, the story I told at the beginning, with the young gentleman, he did end up finally changing his mind and speaking with his parents and I think his parents surprised him with their reaction and were completely supportive, and were holding his hand saying, I love you, when he passed, and were grateful that they there with him, but every story is unique, and we accompany people where they're at, while sort of acknowledging that we believe they have that right to confidentiality.

2720 MS: What kind of patients do you generally see requesting MAiD, what are the primary reasons and are there any peripheral reasons that come up?

2629 VF: So yeah, I totally agree with what Blair said, if you look at it in terms of why people are asking for MAiD, in my experience, in the literature, all the literature that we have on MAiD the past 20 years if we look at our jurisdictions, people report physical and psychological suffering, but then what drives them, and what you will hear over and over again is sort of the existential psychological piece. It’s the loss of autonomy, it’s the loss of quality of life. It's loss of perceived dignity. It's this I am who I used to be and I am not who I want to anymore and I can't live like this and that I think is really important. The typical again, if you look at the literature right now, it's about 70% of people who are receiving MAiD in Quebec, it's cancer, then you see sort of 10% is neurological diseases. And then you see there's sort of see resp, cardiac and other multiple systems, organ failure, stuff like that. Average age is about 76 years old, 95% of the people who are receiving MAiD in Quebec have a vital prognosis. And this is based on our latest data, have a vital prognosis of a year or less. About equally split between men women. So I would say, like, a typical MAiD patient would be somebody in their 70s often with advanced cancer or a muscular dystrophy, or Parkinson's, or ALS who doesn't have the quality life that is meaningful to them anymore. Who generally has a prognosis of less than a year and who is making sort of an autonomous and informed decision that they want to control the time and manner of their death. So that's, that's what I see. And one thing, one story I always tell is, as sometimes, you know, we to be cautious about having conversations about end of life. Sometimes patients aren’t ready for it or, you know, there's a fear of death. If people are asking for MAiD, they're to talk to you about it and they're ready to use sort of frank language. And I remember at the beginning, I would speak to them frankly and say, so tell me a bit about why you're asking me to die and several patients corrected me and said, you know it's I don't want to die. It's not that I want to die. It's that I can't suffer like this anymore. And I find it like a very small but interesting nuance that it's sort of asking for the same thing, but conceptualizing it differently. It's not this death wish in way. It's, it's this need to be free from suffering that's irremediable in any other way.

2850 MS: And Blair, anything you want to add to that?

2854 BCS: No, I mean our experience at the Jewish is really, you know, quite on par, I mean, prior to track two you're looking about, you know, 80 to 85% malignancy close second would be sort of end-stage lung and heart disease. So, end stage emphysema, heart failure, neurological things like ALS and other, other disorders coming in, those, those stats are going to change. Obviously, as track two continues to go as we start dealing a little bit less people who have longer prognostics, but 100%. And I think is Nicky was sort of saying, you know doubling down, this is not about death, it's about control. And one of the things I always tell my patients is, you know, the disease took control, whether that's cancer, whether that's ALS it took control of their life and what medically aid in dying does, is it gives them back control. It really allows them to say, you what, I'm back in charge, I'm going to do this my way I'm going to not, they want to die, and I agree completely. That's not what this is about. It's about saying, listen, I've tried to not suffer in every other way imaginable, right? I thought the fight, I did the chemo, I did the puffers, I did the pulmonary rehab, but, you here I am right? And this as good as it's going to get and it's that existential trepidation of, man, really sucks now it's not going to get better and so that's not what I want to, so I agree completely with what Nicky said, none of my patients say they want to die. The difference is, they just don't want to live like this and they've, and that really is, you know, acting on assistance and dying, a way to control suffering rather than death itself, as the endpoint. Death is just, the means to the endpoint of no longer suffering and I think I agree completely. It seems like we're playing with words here, we’re not. That's, that's the entire axe of what's going on here. It's that patient autonomy, that control of, I can't find relief of suffering any other way, because palliative care is amazing. They're really, really good at controlling pain, and dyspnea, nausea and these other things. But unfortunately, there's nothing that gives our patients back their get up and go, their ability to go play with the grandkids, their ability to go out and do all these things and be independent to go to the washroom. And so that's really the symptomatology that ends to leading us to this here. And then the existential distress of I'm like this until my natural death and or worse. That's generally what precipitates the request.

3119 MS: How frequently is MAiD something that is provided? Can you give me a statistic on the proportion of patients that get MAiD out of sort of maybe all patients in palliative care?

3131 VF: So every year, the Commission on End Life Care in Quebec publishes a report that provides this kind of data, so I tell you the recent stats we have, or that six point, Blair was saying, there's a lot media attention to because right now we have the highest rates of medical and dying in world. So, 6.8% of total deaths in Quebec are the result of medical aid and dying. Of those, and here, I'm not going to get the stat exactly right, but the majority of them have had palliative care services offered. So, I look, I think it's around like 90%, don’t quote me on that but it's high. So yeah, so that's sort about, that's sort of our data in terms of who's receiving and there's a of questions about, is that number too high? How should we interpret that number? I find it really interesting that, that there's a lot of heterogeneity within that number. So it's 6.8% of total deaths, but if you look at Quebec geographically, it's very very, so like, I think Montreal's about four percent of total deaths whereas Quebec City's eight. Why would, why would they have double the rates? Is there something different there? Is there, is it cultural? Is it access? Is it, we don't, I think we don't have those answers yet, but that's sort of what we're looking at right now in terms of aggregate numbers for medical aid in dying. And I think if you look at, that's, that's, that's who has received MAiD. If you look at the number of people who request MAiD, it's also important to remember that, not everybody who's going to request MAiD is going to receive it, right for a variety of reasons. So, I think the stats are about that 70% of people who request MAiD end up receiving it and 30% don't for a variety of reasons, they might die before the evaluation is completed, they might be found ineligible, they might change their minds. So about a third who request it don't receive it.

3328 MS: What is the research field like on MAiD? Do we have research on MAiD happening at McGill?

3334 VF: There’s tons of research on MAiD, in terms of specific projects at McGill that I'd have to think of what I could tell you just to link back to my previous answer is is, there's been a lot of questioning about again, the numbers, the media attention, the 6.8% is that too high? Is it high? What does it mean? What does it mean that Quebec is seeing this kind of exponent, almost exponential, like, we went up by 50% compared to the previous year. What, what accounts for that and again, every act, every act of MAiD that is administered in Quebec is reviewed by multiple bodies for compliance with the law. And so, if you look at the commission that looks at every single act of MAiD administered, they say that like 99.5% of the MAiDs administered are compliant. So, our numbers are big but it's not because our doctors are going rogue and administering it to people who should not be considered eligible. So, when it comes back to research, I'm just thinking of this, the Quebec government I think just allocated research funds of about almost a million dollars to a group, a huge consortium of researchers within Quebec that's going to look partly at this question of, what is, what do these numbers mean? Where are they coming from and sort of the complexities they're in. So, I thought that was kind of interesting and there's, there's numerous studies going on. We're doing a few little ones here right now. I find there's a bit of a knowledge gap currently in terms of how do we support our track two patients and their families? Track two patients, sort of different than track one. They have a mandatory three-month waiting period, be sort of the time they’re first assessed and the time we can provide MAiD. And it's interesting, a lot of patients and families find that very challenging and, and they're kind of upset and they're telling you I’m suffering unbearably and now you're going to tell me I have to wait three months? So, sort of saying, like, what does that look like? What that feel like? What kind of accompaniment do those people need during that period? We don't know a lot about grief after MAiD. How do we support patients and families after? What should sort of aftercare look? Like, what should we provide? What do we provide? I think, because it's such a new sort of, at least in Canada anyway, sort of medical service where we're coming on 10 years. So there's a lot of questions that we still are looking at and still need to answer. And a lot of great research is being done. Also, about relationships between palliative care in MAiD.

3601 BCS: There’s a tremendous amount of questions. I mean again this is a huge field for qualitative research, understanding the why, you know, looking at access, looking at that you know, as Nicky pointed out the difference in, you know, both the number of requests, the number of approvals, and number of procedures administered across the various different administrative regions and Quebec is fascinating. And whether that is, as Nicky said, a cultural or related to the healthcare system and access, I think is a really interesting question. Personally, as a MAiD provider, I think you always have to be careful about bias in research. I would be very, I personally, don't do any research involving medical aid in dying and would be very reticent to approach my patients or my patients families as I'm going through the process because they are always incredibly grateful and would be more likely I would imagine to consent to participate in anything, if they felt it was going to please me. And so, while I think there are amazing questions that I would love to try to help answer, I think it's important as a clinician to remember, you know that you really need to keep clinical medicine and research separate. And so certainly in my practice, while I love answering questions and I do tons of research in other facets of my job, I think you got to be very, very careful. And these are people in a very vulnerable situation and sometimes even you know, surveys and other things, you, I think you do need to be careful for that. So, you know, from as a front-line clinician doing MAiD, that's not something that I’ve evolved into and don't think I would ever really be comfortable to because, I’m in a really really privileged relationship with my patients and families.

3742 MS: Thank you to Blair and Nicky for joining us on this episode of MedTalks. If you're interested in learning more about MAiD, our conversation continues in part two of this episode. This podcast was edited and produced by the MJM podcast team, feel free to reach out to us on Twitter or Instagram @mcgilljmed or by email, we would love to have your feedback.