#95 Live or Be Alive: Medical Assistance in Dying

Steve Legere, a patient with an incurable cancer who has been approved for MAiD, and his partner, Christine Legere


April 21, 2021

Medical Assistance in Dying (MAiD) was legalized in Canada in 2016 under Bill C-14 after decades of public dialogue and debate. This episode takes a deep dive into MAiD, the death and dying experience, and what these mean to patients, families, care providers, and others involved in the health system. We had the pleasure to sit down with and learn from Sally Bean, Director of Policy and Ethics at Sunnybrook Hospital; Dr. Madeline Li, Psychiatrist and Lead of the Psychosocial Oncology Division, Princess Margaret Cancer Centre; Dr. Ahmed Al-Awamer, Palliative Care Physician and Director of Postgraduate Medical Education, University Health Network; and Steve Legere, a patient diagnosed with incurable cancer who has been approved for MAiD, and his partner, Christine Legere. Each of these individuals takes us through a different aspect of living and dying at the end of life and how MAiD has impacted their respective lives and professional roles.

Written by: Larkin Davenport Huyer

Canada's new medical assistance in dying (MAID) law
Madeline Li's Maclean's article
Article: Medical Assistance in Dying - Implementing a Hospital-Based Program in Canada

Nathan Chan [0:00] Hey listeners enjoying the stories that we share in Raw Talk Podcast. Any episodes that peaked your interest? Have an idea for a topic that we should cover? Let us know through our listener survey at rawtalkpodcast.com/survey. We're incredibly grateful to you, our listeners, for tuning in week after week, and we can't wait to hear from you. The survey takes just five minutes to complete, and your feedback will help us continuously improve our content. Again, that's rawtalkpodcast.com/survey.

Jenna Park [0:29] This episode discusses topics that may be uncomfortable for some listeners, including death and medical assistance in dying. If you are experiencing distress, or thoughts of suicide, help is available. Contact 1-833-456-4566 to connect with the Canada Suicide Prevention service available 24/7. Additional resources are provided in this episode shownotes.

Christine Legere [0:58] Steve and I have been together for almost 15 years and married for almost 13. And, 11 of those years were spent navigating all of this along with, you know, life. Yeah, I think like something like this, like a diagnosis Steve has, is obviously life changing in a negative way. But there's also a lot of, kind of, positive things that have maybe come about because of it, like you just look at life so much differently now, you know. And what's important is so different than what it was before. It's really scary to walk this road with him, especially knowing that what he has is incurable, right? And that we're kind of always on this, like, I feel like we both I'd say would feel like there's a bit of like a ticking in the background. Right?

Steve Legere [1:46] Oh, there's definitely a ticking. There's no doubt about that.

Christine Legere [1:49] But that's where I say, like we have looked at life differently.

Steve Legere [1:52] Yeah.

Christine Legere [1:53] We had a condo when Steve was first diagnosed, and we sold that and we moved in with my parents. We have like a basement apartment here. They're retired, they help tons with anything that we need. And it also afforded us the opportunity that we were able to kind of do more. So, we traveled, nothing crazy, like just a lot of Caribbean destinations, cottage for an extended period of time. That's been the way that we've kind of coped through it. And then also meaning other people that are going through a similar situation makes it not easier, but I think like for both of us, it's like a feeling of loneliness.

Steve Legere [2:27] Yeah. Whereas like, myself, I don't have someone to relate with, where I'm very happy and fortunate that Christine does, because like, it gives her someone to discuss, because you're all you're on your own, you know, you're just getting kind of lonely all the time. You know, as much as you want to, and you're appreciating your value, everything you have, there's just a part of you, that's just a little lonely. You know, because no one's going through this with you. My last round of chemo was last June, I did. It was a rough month. In that month, I figured like, in my situation for myself, like I have two choices, I can live or be alive. So I'd rather live. Intolerable suffering is once I lose more quality of life. If I can't get out of bed, then I don't want to suffer like that, you know, if I can't, I don't know. I just don't want to live that way, at all. I kind of want to go and so a little bit. And then even with my situation, there's not like a lot of other people's in a sense, like it's not a body cancer, like, cause it's your brain is different. Like everybody knows, and I almost like plateau, and then I got a "POOM", I am going to just drop, right? And so the idea is to try and go before that or right around that time. You know, ideally is what I want. I think anything that bothers your quality of life, depending on who you are, for me, it's intolerable. I don't, I don't want.

Christine Legere [4:00] Yeah. And once it gets to a point that you're just spending so much of your time in bed, rather than like upright and out there kind of living life, right.

Jenna Park [4:09] We just heard from Steve and Christine Legere. Steve is a 41 year old patient at the Princess Margaret Cancer Center who was diagnosed with an inoperable oligodendroglioma 11 years ago. It was described to him at that time as a low grade, slow growing cancer, which would eventually become aggressive and high grade. We sat down with Steve and his partner Christine to hear about their illness journey and recent request and approval for Medical Assistance in Dying or MAiD for short. You'll hear their story unfold throughout this episode, and we are incredibly grateful to both of them for sharing their time and valuable perspectives with all of us.

Nathan Chan [4:46] My name is Nathan

Jenna Park [4:47] and I'm Jenna.

Nathan Chan [4:48] Welcome to Episode 95 of Raw Talk Podcast.

Sally Bean [5:46] So medical assistance in dying or MAiD as we often refer to it is when a physician or nurse practitioner administers or prescribes the lethal substance to a person who meets the eligibility criteria in order to end their suffering. In terms of the legislation, the Federal Criminal Code oversees or sets the parameters under which this can be done. So it's an exemption to the Criminal Code. And so to be eligible, an individual has to be at least 18 years or older, they have to be capable to make their own healthcare decisions, they have to have what's called a grievous and irremediable condition, they also have to make a voluntary request. So no one can be coercing or forcing them to do this. And then they have to consent to medical assistance in dying. In the most recent amendments to the legislation, mental illness as a sole underlying condition is excluded. So it cannot fulfill that definition.

Nathan Chan [6:43] So the law permits MAiD now but Canada's Supreme Court played a big role in this. Can you tell us a bit more about how that happened?

Sally Bean [6:50] So the Carter case as we typically refer to it, was a Supreme Court of Canada, unanimous ruling from 2015. So K. Carter, was a woman that had the severe spinal stenosis. She was relatively young, I believe she was in her late 70s, perhaps, as memory serves me. But was quite incapacitated due to the spinal stenosis, and she wasn't eligible. This was an illegally available option for her in Canada. So she did ultimately go to Switzerland, to access assisted dying there. And her family brought this charter challenge on her behalf because she did not have that opportunity to access it here. It wasn't a legally available option. So that really prompted or reignited the discussion, I should say there was the Rodriguez case, back in 1993, which was quite similar. A woman that had ALS and wanted to seek help to die. And so brought a Charter case forward that one, of course, turned out a bit differently, and that it was five to four against supporting the prohibition of assisted dying. So, not until 2015, was there this serious, or significant course corrections, I should say in terms of change in trajectory of the law.

Nathan Chan [8:13] So there was a big change in precedent from the Rodriguez first BC 1993 case, what led to the court's change of opinion.

Sally Bean [8:20] Yeah, it was quite interesting, because the court in Carter commented on this. And, you know, of course, if they're going to deviate for precedent, they have to provide context, what has changed, right. And so, you know, they talked quite, quite at length about this and said, from 1991 to 2010, the House of Commons had debated six private member's bills, seeking to decriminalize assisted suicides. So, there was a lot of momentum and interest in this, essentially. Secondly, in 2011, the Royal Society of Canada published a report on end of life decision making, and they explicitly recommended that the Criminal Code be modified to permit assistance in dying. Soyou have this prestigious body in Canada recommending that this be done, of course, Quebec, because it has always been a leader in this area legislatively. So they had passed a provincial law. It wasn't yet enforced at the time of the decision, but there was already this provincial precedent. And and the legislative landscape had changed quite significantly, by 2010. When this all was initiated, there were lots of international jurisdictions that had legalized this. We had a lot of evidence and precedent to build from so a lot of the concerns that might have existed previously had been either disproven or demonstrated that there are sufficient, procedural safeguards that we could put into place to do this. So I think, you know, there were lots of really important developments that allowed them to change their rationale and approach, but it's quite interesting to see that shift in a relatively short period of time quite so significantly.

Nathan Chan [10:02] Some of the language and MAiD legislation seems a bit hard to grasp. I'm wondering if you can clarify what grievous irremediable illness or condition means.

Sally Bean [10:10] That's the legal definition that has the four sub parts. So that's the serious and incurable disease, illness or disability, irreversible decline in capability, intolerable suffering, that can be physical or psychological. And then fourth is the reasonably foreseeable natural death. So that's, those four conditions constitute a grievous and irremediable condition.

Nathan Chan [10:33] So what's considered intolerable suffering?

Sally Bean [10:36] Yeah, so in intolerable suffering is actually probably the easiest criteria to assess because it's subjective. It's what the patient says it's suffering, just like in clinical care, you know, pain is what the patient says it is. And so, in this context, it's very much subjective to each patient to describe what intolerable suffering is to them. So, you know, as long as they're able to articulate either psychological, physical, or both types of suffering, that condition can be met.

Nathan Chan [11:08] And reasonably foreseeable natural death.

Sally Bean [11:11] So it's not defined in the legislation, of course, that would make it easy. In a lot of other jurisdictions, they'll often have a prognosis timeframe, that's specified. That's not the case in Canada, we don't have any time basis specified in terms of what that means. So it really falls to clinical judgment. Now, that may sound vague and scary, it is constrained in terms of peer review, and certainly Legislative Review and in terms of the coroner's office, for example. So groups such as the Canadian Association of MAiD Assessors and Providers or CAMAP, they did develop a practice guideline that helps interpret reasonably foreseeable. And so they suggested it be thought about in terms of reasonably predictable, or not too remote. So again, still just as vague, but it's a little bit more helpful. You know, you would never hear a physician otherwise use the term, you have a reasonably foreseeable natural death. It's, you know, very much an awkward legal term.

Jenna Park [12:17] We also sat down with Dr. Madeline Li, a psychiatrist and lead of the psychosocial oncology division at the Princess Margaret Cancer Center, former head of the MAiD program at the University Health Network (UHN) and current MAiD assessor and provider at UHN. We were curious about the implementation process of MAiD after its legalization in 2016. She described how their team built the MAiD program at UHN and some of the initial challenges they faced during the process.

Dr. Madeline Li [12:46] One of the challenges initially was just trying to develop it in the dark, right. So it was decriminalized, and then we had these many months to get ready without knowing what the rules would be. The challenges for us was what model we were going to use, but also the continually changing legislation. Even the name, initially, it was called PAD, physician aid in dying or physician assisted dying. I built this framework and I put the name PAD in on everything and then they changed it, I can't remember what the second iteration of the term was, but they used a different acronym. And I had to go in through all my documents, change that name. And then ultimately, it became MAiD. And then I had to go on a third time and change everything because we didn't even know what we were going to call it, initially. So just a small example of how it changed in real time. Similarly, I was creating the process, the granular process, the legal forms. And I think, initially, the big challenge was just how uncoordinated it was, that every hospital was doing their own thing and creating their own forms.

Jenna Park [13:53] Dr. Li also published a piece in the New England Journal of Medicine describing the implementation process of a hospital based MAiD program at UHN and will have it linked in our show notes. But what does the actual MAiD process look like? Sally walked us through the process from the time of patient inquiry about MAiD to the intervention day.

Sally Bean [14:12] It could be a patient asks about it. So it might be an inquiry for more information, it could be a very formal request. A lot of patients who have thought about it for a while and might just initiate the conversation and say, you know, I'd like to get this process started. Or it could be that their health care provider brings it up to them as an option, if it's something that they might be eligible for. So any of those pathways it might be initiated, and then I'm contacted, and will liaise to have an assessor go and speak with them and see if they're eligible. So going for those criteria that we walked through in the beginning. And if they're eligible, then we typically do the written request. So you have to have an independent witness. Initially, it was two independent witnesses now, with the recent changes in 2021, you just have to have one independent witness. So we'll go and facilitate that. They also have to have a second independent eligibility assessment. So a second physician or nurse practitioner that confirms their eligibility. Then the other practical logistics, so finding an appropriate space. So you always want to do this in a private patient centered space. Also the pharmacy, so there's a medication protocol, so you have to provide that to pharmacy and they have to fill those kits. There's also the IV insertion. Most commonly it's done via two peripheral IVs, so the medications are administered that way. There is the option for patients to self administer and drink a drug cocktail, the medication cocktail, but that's very rare. There's only been two of those cases in Ontario in the past five years. So the vast majority really focuses on administration. So you know, the IV insertion then of course, there's the actual provision, which is quite short, but you know, once the patient's pronounced completing the death certificates. Every case is reviewed by a team at the coroner's office, and so we send the paperwork off to them to review and make sure that we followed the law.

Jenna Park [16:19] Now that we have a more nuanced understanding of MAiD, let's hear more from Steve and Christine, as they describe the point in time, when Steve decided to formally request MAiD and start the process.

Christine Legere [16:29] Once he decided he didn't want to move forward with chemo anymore and moved over to the palliative care. That's when it was like, okay, well, let's, let's just do the process now, instead of waiting, you know, because once he's approved, he's approved,

Steve Legere [16:43] It went pretty smoothly, I think I had like two phone appointments with like chairs to make sure all these questions for approvals and whatever. And they got back and said that I was approved, which was great. As soon as we knew that I wasn't doing chemo anymore. Because I don't want, I don't want to struggle. You know, like, whatever I have left is mine. Like, I cannot emphasize how much like that is important to me. I just wanted to make sure everything was good to go, and it is. I just find with with that for myself, the more organized I am with that stuff, it makes me feel better. Because maybe I don't know I don't want to sound morbid, but like we all die, just, I might have a little bit more control over mine. Once I was approved for everything like this, just like this sigh of relief just came over me because I went palliative. Like, I was just trying to take back whatever I have left, you know what I mean? Whatever is left, I want it. I don't want to give it to medicine. When like my cancers the last thing on my mind when I go to bed and the first thing on my mind when I wake up, it makes you really tired. Because then people like oh, well, you've been alive for you know, a decade with cancer and longer maybe a little longer. I'm like, yeah, but. Yes, I'm fortunate but at the same time I've done, you know, one surgery and four treatments, I'm exhausted. I don't plan on going anywhere anytime soon. I'm enjoying my time. No doubt, but I don't have to fight for the drugs that I know knock you down and you got to build yourself up. I don't think my body is strong enough to be knocked down. Because I don't think I could build it back up again. So that's why like, I wanted to do the palliative and with the MAiD and everything. I know where I'm at because this, I've been dealing with it for a decade. None of these decisions that have been made are like spur of the moment, nothing. Everything has been discussed and talked about and analyzed. I try not to make my decisions rationally. So I try and make sure this thought and ask people. Make sure that I'm in especially my situation sometimes I'm not making the right decision but like everything like this Yeah, everyone. The people that I need to be behind me, they are behind me. I'm grateful.

Jenna Park [19:02] Dr. Li is currently leading a large longitudinal, mixed method study with patients with advanced cancer and their caregivers to help better understand the physical, psychological and social factors that may contribute to the desire for death and request for MAiD over time. In addition to our clinical and research contributions, Dr. Li published a powerfully, raw, and honest article in Maclean's last year titled: Daughter, Doctor, Deathbroker, a MAiD provider in her mother's last days. She described her own personal experiences and reflections with her own mother's illness, desire to pursue MAiD, and end of life experience. We will have it linked for you in the show notes and we highly recommend you take the time to read this important piece. Part of why she shared her story with the world was to help highlight how complex it can be for providers to assess capacity as people may have both rational and impulsive reasons for wanting MAiD at the same time. She told us a bit about that whole journey and experience.

Dr. Madeline Li [19:59] There were so many angles in that story that I was just documenting for myself. For sure, the experience of losing my mother and the experience of grief but, there was that piece about being a healthcare provider, and what it was like to be a daughter, doctor. But the third piece was also about being somebody with a lot of knowledge about MAiD and her request for MAiD. And I found myself just wearing a lot of different hats through that experience. And I actually didn't think I would publish it except Bill C-7 was coming. There was a lot of discussion around, particularly for people without a reasonably foreseeable natural death, how we're going to assess the nature of capacity and suffering. And I thought there were a lot of lessons in my mother's story that might inform the debates. And I felt that particular piece was something I wanted to get out to inform the debate around C-7. And so that's why, ultimately, I took a part of the story and published it. I don't know that I quite captured the core of the debate. But, what it did illustrate is how hard it is, to determine what reasonably foreseeable natural death is. And I think the challenge with my mother's case is that some would have said she did have a reasonably foreseeable natural death and ultimately she did. So my mother had Parkinson's disease. And she was older, her Parkinson's was progressive. But, she was still enjoying her life. She was walking to Chinatown from her home every day, playing mahjong, she had a regular gambling parlor that she went to, cooking for herself, living independently. We knew she was getting more frail. My siblings and I had all regularly spoken to her about, you know, maybe it's time you come and live with one of us or considering moving into assisted living, which she always refused. She didn't want to. And the very last time we had a conversation, this is three weeks before she went into the hospital, where again, I was saying maybe it's time you should move in with me. And then she joked, or she said, just give me the needle. I said to her, well, you know, that's the work I do. And yes, if you want to, I've arranged it for you. And she laughed and said, no. She didn't want it. She wasn't ready. She was waiting to see my daughter grow up, there's still things she wanted to do. So even just three weeks before she got sick, she wasn't seriously asking for MAiD. But then she developed an acute bowel obstruction and was admitted to hospital. And at the point of intense vomiting and pain was saying, I don't want any treatment for this, if I have a serious illness, just give me MAiD right away, just give me the needle right away. And I was really struggling again, with my role of being daughter or doctor or MAiD provider or whether to advocate for what she was asking. Or, in my capacity as a MAiD provider, protect her from making an impulsive choice in the context of pain and vomiting. I wanted to not be involved in the discussion, but I did tell the doctor, she's saying she doesn't want surgery or any treatment, she's actually requesting assisted dying. And then she underwent a whole series of complications. She did ultimately consent to the surgery to relieve the bowel obstruction and, unfortunately had a series of complications related to that, much more complex than it appears in the article. And there were several points, it was almost her default to ask for MAiD in an and impulsive way. But there were also windows in her treatment where she was stable. And then she came to me and in those windows, and I described that in the article said, you know, I don't know whether to be mad at you, or to love you for doing this. And, I knew she was both. In some ways, she would have been preferred to have been spared this but, in other ways, she was glad to have me sitting in that room with her and maybe getting out of the hospital and seeing my daughter graduate from university, for example. So it was a complicated decision for me in terms of how much to advocate for her MAiD request at the time. And then ultimately, when she had the repair of her obstruction, dehissed, and she was leaking into her abdomen and they had to go into an emergency surgery. And then, again, she said to me in the morning, I'm in pain, just give me MAiD. And I went to her doctor and I said she's asking, and they were going to have the conversation with her because the decision was, you know, would she go back into surgery? So the other wrinkle is my mother doesn't speak English. And so the communications had always, to that point happened through me translating, and using a family member as a translator is never a good idea. And so I insisted that they have a professional translator present for this final discussion of do you want this emergency surgery or not. Where she had the opportunity to request MAiD herself, and she didn't. And she agreed to the surgery. I also am sure, I think, that she thought she wouldn't survive the surgery and she certainly behaved like she didn't expect to, and said goodbye to all of us. And I did bring my daughter in through FaceTime, and she said goodbye, and, you know, told to her to do well in school, and good luck with your life. And she said all the loving grandmotherly things that you would say to all of her grandchildren and everyone who was present. And then she did go in for the surgery but, things, ultimately, didn't go well.

Nathan Chan [22:34] MAiD has been in the works in Canada for several years. But its presence in the public conscience is still relatively new. We asked our guests about some of the misunderstandings they faced working in the field.

Dr. Madeline Li [25:38] I think the biggest misunderstanding is the public perception that MAiD is about unbearable physical suffering, when really it's about choice.

Sally Bean [25:49] A lot of people think of physical suffering as the reason that someone would want to end their life. And, in reality, that's rarely the case it's typically due to psychological suffering. And so I think that's always a big surprise for folks in something that they assume it's just being in physical pain. The other thing I hear a lot from public and healthcare providers is that MAiD is a failure of palliative care. So if we just did better palliative care, they wouldn't want this option. And I think that is a huge misconception that, you know, the Federal Report shows that patients that have accessed MAiD had access to palliative care. So the vast majority were receiving or had access to palliative care. And it tends to be more, so a cluster of personality traits that I would say, emerge in the prototypical MAiD patients. They tend to be fiercely independent, don't don't like having to rely on others, have always lived their life, you know, to the beat of their own drum. I think that it's more about individual values and how they've lived their life that really precipitates in a MAiD request, of course, in the context of their health status and condition, versus a failure of care. It's more so about a values orientation. And of course, someone that's suffering.

Steve Legere [27:22] I wanted to do it before I even knew you could.

Christine Legere [27:24] Knowing your end.

Steve Legere [27:26] Knowing my end because I don't want to suffer. I think once I cannot walk, you know, things like, I can't bathe myself. Stuff like that, if I can't be at least a little bit independent. For me, there's no quality in that. So I'm not interested,

Christine Legere [27:44] Especially when Steve was first diagnosed, they gave this very broad number of five to 15 years that he had to live. So, of course, like once a couple of years passed, and then he had to do his first chemo treatment right away. We started thinking like, it's the end coming, you know, and how do you prepare for that. And, Steve, I think, like the whole process of him having cancer and not being able to work anymore, and there being the kind of shift in our own family unit where it became like Steve is unable to work anymore, and all those things. So he's already lost a lot of his independence. And so then when you add on the illness, and you know, losing those things that he wants to be able to do by himself,

Steve Legere [28:29] I do. I want to have control there at the end. You know, I don't want to suffer. And I know, if I am suffering, she's suffering, and everyone else around is suffering. It's over, you know, this is better that way, because there's no getting better. So

Christine Legere [28:46] Although that's like a hard thing to live with, after. You can also look at it in the way of like, is a comforting thing for him. So then I'm comforted. Do you know? And that's, I think, a big way of like, also navigating all of this because it's for sure, a difficult conversation. It's amazing to me, though, throughout the process, when we've told other people, especially for me, when I've told people and Steve's not there, many of them are kind of like, oh, but aren't you upset? Like, aren't you upset that he's making that decision? Or do you support that? Like, they seem very, not appalled, but surprised?

Steve Legere [29:21] The thing is, until you've been through it? You don't know? Yeah.

Christine Legere [29:24] And that's exactly it. Like I'm when I'm not going through it, but I watch what he's going through every day. And I see all of his bad days. Right? I mean, when you visit with friends and family and anyone who's not you're really close circle, they only see you on the good days, they don't see you when you're having a bad day, you wouldn't go. So that also makes it easier to support him and like not for anything in the last little while just seeing him declining. It makes it more that it's very real that what's happening and I understand more why Steve would want to take that approach.

Nathan Chan [29:58] Steve and Christine's desire to alleviate suffering and maintain independent control reflects some of the misunderstandings about MAiD we heard earlier. Well MAiD often represents the final step for many people's journeys, the field of palliative care is dedicated to alleviating suffering and promoting quality of life for patients with serious life threatening illness. We spoke to Dr. Ahmed Al-Awamer, a palliative care physician and the director of postgraduate medical education at UHN, to learn more about the field of palliative care.

Dr. Ahmed Al-Awamer [30:28] Palliative care I find means different things to different people, and I usually spend some time every time I'm seeing patient for the first time trying to demystify what is Palliative care and what do we mean by that. If you look at the global, universal definition of palliative care, as it's laid down by WHO, it's an approach that aims to prevent and relieve the suffering of patient with life threatening illness and their family. In other words, I usually tell my patients that I am here to help with improving your quality of life. I want to make sure that you're in the best shape possible. And, I just want you to know that I'm here for you throughout the disease trajectory. We cover different things in palliative care. So we cover symptom management, pain and symptom management, we cover also other psychological, spiritual and social aspects of patients care needs. We also want to make sure that our patients are coping well with illness and their family as well.

Nathan Chan [31:34] The field of palliative care has evolved quite a bit over the past few decades. To learn more, you can also check out Episode 32, delivering quality, end of life care. Dr. Al-Awamer shared with us what conversations about end of life care look like with patients and their families in practice.

Dr. Ahmed Al-Awamer [31:50] The conversation can be very different and variable, it's different from one person to the other. You meet patient and family who had like previous experience, for example, one of like a loved one had, for example, cancer or other life threatening illness, and they have good expectation about what to come. And they make a lot of plans. And I meet other patients who are in need of information, like I know that I have cancer, but I don't know what to expect in the future, I don't know what should I be planning for. So we provide them with the education that they need to plan. And we also want to make sure that we have a backup plan, I usually tell my patient, I am here, we want to hope for the best but, we also want to plan for the rest. So the discussion is mainly about, okay, we're hoping that everything will go well but, what if it doesn't work? Well, what sort of support, what sort of plan we should have? What would you like the doctors to know about you? What would you like family, your family to know about you? Because what I tell my patient is, that a lot of times in the context of life threatening illness, things sometimes could change, emergencies can happen, and I see a lot of times family struggle when these things happen because they have to step in and take a decision on their loved one's behalf, especially if they're the power of attorney as well have to take decision. And if they don't know what's important for their loved one, they can make the wrong decision. It can be quite distressing.

Nathan Chan [33:31] And how's the legalization of MAiD impacted the palliative care landscape in Canada?

Dr. Ahmed Al-Awamer [33:35] To begin with, there is the MAiD experience itself, it's different than natural, like the palliative care provider spoke to us about how is it different observing someone dying naturally, which can happen in different ways but, most of the time to happen gradually, and people become gradually unresponsive. As opposed to observing someone who's coherent and alert, receiving a medication and, then they die because of this medication. So this difference in the experience can be distressing for people who are witnessing that. Now this also was expressed even by people who are very supportive of me, they still felt like it's a bit different. I have to say that also some of the palliative care providers, especially people who provide MAiD after having multiple experiences, they actually tell us that providing MAiD was fulfilling because they felt like they're supporting their patient and helping them achieve their wishes. So that's one thing. The difference in the experience and how people perceive that. The second important thing that we witness in palliative care or change in palliative care practice and it's not changed. It's mainly like this. We are still holding the same philosophy of care and we still providing the same standard, but we noticed that there is a change in the workload, for example. So a lot of times MAiD is conceptualized as like one time intervention. So I want MAiD, okay, you go for MAiD assessment, and then we book MAiD intervention. This is how people view it. Okay. But in the reality when you're working with patients who requested they, these patient who go for MAiD and their family, they require significant amount of support around making the MAiD decision, proceeding with MAiD decision, answering their concern, trying to help mediate the conflict and the tension that sometimes happens between patients and families and palliative care providers find themselves providing all these indirect support needed for MAiD. Although MAiD was introduced as a distinct discipline from palliative care in Canada, but the pallitaive care provider find themselves providing all the support that is it for that. One of the things that also change in the palliative care practice, because of the legislation have made and the mandate to have people capable and other at the time of the MAiD assessment and MAiD intervention. In the past, a lot of the palliative care provider was saying that they could not provide pain medication, they could not provide any medicine that can cause sedation, or can cause drowsiness. Sometimes the fear comes from the patient themselves, because they don't want to compromise their MAiD assessment or MAiD intervention. So they kind of decline pain management. And sometimes, the provider themselves the validity of care provider, they worry about affecting their patient chances. So this is another thing that comes very strongly in the interviews we held with palliative care providers. Another thing that we hear is the change that sometimes happen in the relationship between the patient and palliative care. So sometimes there is a fear, so MAiD created fear, because some of the patient and family thought that palliative care is about MAiD. They were apprehensive of palliative care and they did not want to accept that. So there is this stigma that happened, there are times where there was mistrust. So for example, some of the palliative care provider who were not providing MAiD, their patient felt like, you're not on my side, I can't trust you, you're going to sabotage my MAiD. So there is was this mistrust that sometimes created by the different views. And we hear from some patient from some providers, as I told you, guys, a couple of others that actually in sometimes it felt like MAiD strengthened the relationship because they had come to provide me for their patient. And there was actually the relationship felt like very strong at that time and very trustingg. The last thing I want to mention is the impact of MAiD on palliative care resources that we have witness. Because of the indirect support that palliative care has to provide for a MAiD. It can created a lot of strain on the resources. And we know that in that time, we don't have many resources. So this is the relationship between MAiD and palliative care. There is some positive outcome that comes from that with the heightened public awareness and fulfilling patient wishes. And there is also some strain that happened in palliative care resources, because we look at MAiD as a one time intervention. And we did not visualize it as something that require significant amount of data in direct support.

Jenna Park [38:47] There have been notable impacts of MAiD on palliative care physicians, both on their clinical practice and well being. We asked Dr. Li what some of the main challenges happened for her as a MAiD assessor and provider.

Dr. Madeline Li [39:00] I think I've been really fortunate at UHN. I know early on for some providers, that some would say that there were challenges around acceptance by our peers and stigma. And early on, we tried to be quite sensitive to that. So the other thing about how we implemented that UHN is that we have their different models for implementing it and some centers use a model where any physician nurse practitioner can be expected to respond to a request for MAiD from a patient. And then there are centers like ours where we create a specialized team of people who are experienced and skilled in providing MAiD. And early on, there was a feeling that the members of this team should be confidential, right because we didn't want stigma associated with being on the main team. I don't think that turned out to be necessary. I certainly didn't feel that that was a problem for me. Actually the more interesting challenge I had was just the nature, how compelling the nature of the work was in the sense of urgency, right? I actually found that there was a period of time where I was prioritizing MAiD work. Balancing usual duties from voluntary MAiD work was a bit of a challenge.

Nathan Chan [40:17] Dr. Al-Awamer, has shared with us his personal perspective on MAiD,

Dr. Ahmed Al-Awamer [40:20] I think I'm public about my personal perspective, I consider myself a conscientious objector, because of my religious values. So I do not provide MAiD, I do not do MAiD assessment, but I do provide palliative care. And part of my commitment to doing palliative care is, I want it to help and support my patients, and I wanted to be there for them. So I'm still committed to my patient, and I want to do everything I can do to help them. Now this sometimes can create internal conflict for me, because I'm kind of torn between my personal values, which tells me that I should not be participating in MAiD and, between my commitment to my patients where I want to provide them with the best care possible, I want to address their concern, and I want to be there for them. So sometimes it can be challenging, like sometimes some of my patients asked me to be present during their MAiD intervention. And that was very challenging, because of the traumatic experience of MAiD itself and because of my personal values about MAiD. As a conscientious objector, I'm always trying to be mindful of my own meaning and my own bias and try to support my patient as much as I can but, it's still like, it's not easy. Now, I think one thing that is also important to mention here, I remember one time it was mentioned, I think, that if you are not comfortable with MAiD, then don't go to palliative care, or don't pick palliative care as a speciality, for example. And I think this is a serious concern, because in palliative care, you want to be inclusive, you want to be respectful. Usually the values of care provider, act as a bridge between the healthcare system and their own community. So if you try to exclude physicians or providers with different backgrounds, or from racialized background, or with different values and belifs. Then this would have have eventually huge impact on the community, especially minorities in the future, because then they will see like the bridges between healthcare and the community is broken. And this can create mistrust and issues. Part of what I want to do, I come from a Muslim background, so part of what I want to do all the time is I want to make sure that the system is aware of the needs, for example of Muslim patients and how can it be accommodated. On the other hand, I also want the community to be mindful of the importance of palliative care and try to clarify any methods or misconception about this. So this is why it's important to be mindful that you want to be inclusive, and you want to have as many people represented in palliative care, even if they have their own values against providing MAiD. In the context of providers, they will still be committed for their patient and they will still continue to do the best for their patients.

Nathan Chan [43:33] Whether to participate and provide MAiD is often a very personal decision for many physicians certainly helped clarify how physicians navigate the system in practice.

Sally Bean [43:42] It is certainly voluntary, but there are professional obligations. So all regulated health professionals in Ontario do have standards established by their professional College in terms of how they have to respond in situations that might conflict with their own personal conscience, for example, and MAiD is certainly a great example of that. So for physicians, they are required to provide an effective referral. That's the language that's used in the College of Physicians and Surgeons and in Ontario's policy. And so that means that you have to connect the patient with information or an individual that's willing and available to provide the service. So that could be referring to a colleague, referring to a care coordination service, those types of things. So it's really just providing access to information, and beyond that there's no obligation to participate. I'll say that, you know, certainly we would never want someone to participate in something that violates their personal conscience.

Nathan Chan [44:48] We asked Sally what other supports are provided for healthcare providers with respect to MAiD.

Sally Bean [44:52] In the early stages of assisted dying we certainly did a lot of education for staff to so that they understand and what to understand what to expect. And, we also would provide debriefs afterwards just to give them a chance to reflect on what had transpired, how they're they're feeling, make sure that they knew if they needed to speak to someone, we could connect them with counseling and in those types of things. So really tried to build that into the process. I think now that we're five years on, there's not as much of that occurs now, unless it's a particularly significant or unique case. But those supports are always there, so always reminding staff that, you know, if they're feeling upset, or want to speak to someone, they certainly can. For the MAiD assessors and providers, there is a community of practice with CAMAP, as I mentioned earlier, and so there's a good peer support network there in terms of other people that are doing the work. And there are also resources specific to MAiD for patients and families. So there's a Bridge C-14, which is a grief bereavement group for family members that have had a loved one, go through assisted dying. I think that there's pretty sufficient supports in place for those that conscientiously object, I think, you know, the interesting piece is that a lot of the focus was on those that conscientiously object, I'm rethinking that terminate, I don't think it's a great term, I prefer conscientious abstention or continuous collaboration. I think that speaks a little bit more in a more nuanced way to the situation but, you know, for those that conscientiously abstain from participating, there are supports for them. But I do feel like there needs to be a reciprocal support or respect for those that do provide MAiD. I think, you know, the, the default is essentially conscientious abstention. It's a small number of providers that participate in assisted dying, and so they're a fairly marginalized group, by virtue of that, or at least a minority group, I'll say, would probably be a better characterization. And so I think that there needs to be a mutual recognition of that, that by virtue of being a very small number of people that provide this end of life care, they're equally likely to have difficulties with colleagues and things like that, that might disagree with what they're doing. And so I think that's a really important piece that needs to be recognized.

Jenna Park [47:43] As a health care provider herself within this minority group, we asked Dr. Li, whether she feels supported as a MAiD assessor and provider within her institution and by her colleagues. We also asked whether more can be done to support the providers participating in MAiD.

Dr. Madeline Li [47:58] I do feel very supported. Of course, I'm biased in saying that because I created the program, and I put in all the supports. I no longer lead the program, I should say that. But, now that I'm a member of the team, rather than leading the team, I do feel very supported. I think we've put in an infrastructure where we made sure that it wasn't just the providers and assessors as a team supported each other, but, we also had strong support from the institution with bioethics and spiritual care, and all the allied health professions. I think, as a MAiD community, a lot of work has been done by CAMAP, Canadian Association of MAiD Assessors and Providers, in developing a community of practice. So I think as a community, we feel fairly well supported. I think the big challenge for the community in terms of support is compensation. Right? Because this is work that's done on the side, and there are no, at least in Ontario, still, there are no made specific billing codes for doctors to be compensated for this work. And even worse for the nurse practitioners. They're actually not paid at all by the government for work. It's a situation that really is untenable.

Nathan Chan [49:08] We also asked Dr. Al-Awamer if he felt supported by his colleagues and within this institution, given his perspective.

Dr. Ahmed Al-Awamer [49:14] I'm so lucky and fortunate to have a very supportive team. I'm just worried that I don't think everyone has the same support. When we were studying and trying to understand the relationship between MAiD and palliative care and how do they impact the practice? We made an observation that a lot of people who are conscientious objectors, they were very reluctant to share their views and their concerns. And, at some point, it felt like it's like being a conscientious objector can be visualized as a signal. As someone who's not willing to provide care for their patient as someone who's rigid and not willing to support the patient which is completely untrue because, all the people that I spoke to they were actually very willing to support their patients. I think it's important to be mindful of that as well and try to create an inclusive environment.

Jenna Park [50:12] In addition to providing a community of support for health care providers with MAiD, both for those who are involved in those who are not, it is also important to emphasize the need for psychosocial support for patients and caregivers facing the end of life. Steve and Christine shed their own individual and shared experiences with psychosocial care at UHN. They reflected on how helpful it has been to have the support embedded within the cancer system to help them navigate their illness journey together. Steve also shared his gratitude for Dr. Li's support over the years as his psychiatrist.

Christine Legere [50:45] You know, being part of the University Health Network and you being a patient at Princess Margaret, if it wasn't for them, like I don't know where the heck we would be. We both utilize the psychosocial services at the hospital. I also like through them have learned about other programs like Gildas Club, Wellspring, all sorts of like community based programs. You know, I've been seeing a doctor at Princess Margaret who's been like, fantastic, and just kind of bring up any concerns around MAiD and like what's happening, like just the general of Steve not being here anymore. That I will kind of talk about with her.

Steve Legere [51:22] I have such a great relationship with Dr. Li. Because I've been a patient of hers now, for many years, we have quite a great relationship. I tell her about so many things and she just kind of knows how to make me feel a little better. We break things down, sometimes she makes me think for myself for the answers.

Christine Legere [51:42] Given that they're at the cancer center, they see it every day. And so they're just so familiar with everything that comes with it. And there's so many layers to it, especially the longer I think that you're living with like a terminal illness and knowing, you know, what's kind of lies ahead. But I think for both Steve and I, there's been times where we'll engage with either one of our doctors, and they'll then follow up with the team, right? There's sometimes things that come up in a psychiatry appointment of maybe behavior that's happening, that then Dr. Li will say, like, okay, you know, what that actually relates to what's going on, I'm going to talk to the team, we're going to use this medication, or it's all so connected, which makes it almost so much easier. And I think even just with the records, they can go right, and they see everything that you know, the other doctors were writing, it's just, it's so efficient. I think another big thing for Steve and I like throughout this is, of course, there's times when we're each in our own kind of corner feeling a certain way about cancer and what it's done to like our lives. But when we come back together, and remember that it's like an us thing, it's affecting us. So instead of looking at as just Steve, we look at it as I like we because both of us are affected. And then you do feel a little more supported, like both of us, you know I mean? Because you're not?

Steve Legere [53:08] Like for me, like, I know, I was worried about me, but I worry about her.

Christine Legere [53:12] Which is good, because I worry about him.

Nathan Chan [53:16] So what does the future hold for MAiD? On March 17 2021, proposed changes to the legislation in Bill C-7 became law. Sally walked us through these recent changes to legislation

Sally Bean [53:28] In 2016, in terms of legal eligibility criteria, you did have to have a reasonably foreseeable natural death. That was one of the key ones. The other recent change in C-7, so as I mentioned, there's a two eligibility streams. One where you have a reasonably foreseeable death and the other where you do not. There's different procedural safeguards associated with both of those streams, as well. The other big developments in C-7 is that there's the opportunity for a waiver of final consent. This is available only to those that fall in a reasonably foreseeable natural death stream. It allows the person to essentially consent in advance and they waive that final consent, so they don't have to be capable at the time of provision. So as long as certain steps are, are met along the way, you have to have a written agreement and things like that done in advance, they would still have this option. So I think that that's a very much an autonomy, enhancing and preserving step. This is a significant improvement, in my opinion.

Nathan Chan [54:34] Sally also mentioned that another significant change for MAiD was still in the works, specifically concerning people with mental illness.

Sally Bean [54:42] Mental illness, as the sole underlying condition has been excluded from the legislation with a sunset clause set for two years. So March 17 2023, is when that would expire. That's certainly predicated on the notion that will be lots of work in the interim in terms of clinical practice guidelines and developments around, you know, who would be appropriate? And how would we know that in terms of mental health condition? So I think that there's going to be lots happening in the next couple of years to see if this is something that's either they'll update the legislation and continue with the exclusion or it'll expire? If not, and then that will be an option.

Jenna Park [55:34] Dr. Li shared her thoughts on how Bill C-7 may pose additional ethical challenges for providers moving forward.

Dr. Madeline Li [55:41] I think it's more of a challenge for us, ethically, in some ways, because we're going to be getting a lot more requests from patients who we otherwise wouldn't be thinking would be asking for MAiD. And I think it's going to require the providers and the assessors, the physicians and nurse practitioners involved in MAiD to be evaluating where they draw a personal line. Some have called that selective, conscientious objection, right where you can, I'm willing to provide for people with a reasonably foreseeable natural death, but not for those without. I think we are gonna have to decide where we sit personally on that. But then it'll be a problem because you won't always know going into an assessment. It's hard enough to say no to patients, that's always been a challenge with MAiD. But we're going to be seeing more patients who are unhappy with our decision, because it's our personal decision, as opposed to a legal one.

Jenna Park [56:38] Dr. Li also shared how her personal opinions and perspectives on MAiD have evolved over time.

Dr. Madeline Li [56:44] Well, my position on MAiD has shifted in being more comfortable with it than I was when I came into this four years ago. More recently, my perspective has shifted, again, because of the introduction of Bill C-7. Which has again changed the landscape of MAiD. And again, in a way that I think wasn't necessary. The main difference is that Bill C-7 has removed the requirement for having a reasonably foreseeable natural death. I actually don't think we needed to remove it. I think that if we are going to remove it, the government needs to finally define it, because that's been one of the big challenges with Bill C-14. There's no definition for what reasonably foreseeable natural death is and so there's a lot of variability across the country. And I would say that there's always been a point of discomfort for me personally, in providing assisted dying to people who are not near the end of life. And for me, it's the distinction between assisted dying, or somebody is dying anyway. And then I'm medically going to assist them with that, because they're suffering in some way. And assisted suicide, where they're not dying. But their quality of life or the life that they have isn't acceptable to them. And they want to end it. And actually I don't think that falls within the realm of medicine. I think that doesn't need to be. If the government is going to allow for that it doesn't really need to invoke medicine for people who just don't enjoy the life that they have. So I think the farther out you are from dying, the less it's actually assisted dying, and the less comfortable I am.

Nathan Chan [58:29] It goes without saying that discussions about death and dying are universally challenging to navigate. Conversations about end of life care and health care have evolved over time as the field of palliative care has grown and with the introduction of MAiD in Canada. The landscape of MAiD continues to evolve with Bill C-7. We hope our conversation today helped to promote much needed, open dialogue about MAiD and end of life care in Canada from diverse perspectives.

Jenna Park [58:54] Thank you to our guests, Steve Legere and Christine Legere, Dr. Madeline Li, Dr. Ahmed Al-Awamer, and Sally Bean. Their perspectives were incredibly insightful, and we appreciate the diverse and honest perspective shared by all guests regarding medical assistance in dying.

Nathan Chan [59:11] This episode was hosted by Jenna Park and me, Nathan Chan. Interviews were conducted by Eryn Tong, Noor Al Kaabi, Larkin Davenport Huyer, Jenna, and me. Our content creator was Larkin, our audio engineer was Helen Yang, our advisor was Eryn, and Yagnesh Ladumor was our executive producer. Be sure to tune into next week's episode on genetic counseling.

Jenna Park [59:51] Support the show by using the affiliate link on our website when you shop on Amazon. Also don't forget to subscribe on iTunes, Spotify or wherever else you listen to podcasts and rate us five stars.