 Good afternoon. I'm Constance McIntosh, Acting Associate Director of the Del Health Law Institute. So welcome to last see. I am very pleased to introduce our esteemed guest professor Jennifer Gibson. She directs the University of Toronto's Joint Centre for Bioethics. She holds with some life financial chair in bioethics and she is quite often called upon to bring her expertise to government advisory committees on policy development. One of the most recent engagements on this front was chairing a Council of Canadian Academies Expert Panel on the question of whether to permit advanced directives for medical aid and dying. And their report was released I think four weeks ago in December. Time is just flying for me. So before I turn the podium over to Professor Gibson just a quick reminder of our format. Professor Gibson is going to present formal remarks until close to 1 o'clock and then we'll open the floor for questions for some 20 to 25 minutes. And now I ask you to join me in welcoming Professor Gibson. Well good afternoon everybody. Thanks so much for coming. It's great to see such a full room and what it's most exciting for me about this is that this is such an area where we're constantly continuing to learn. So I'm really hoping that it'll be a generative conversation as much less meat while there will be me talking. You'll have to bear through that. But a lot of this type of talking so that we can we can really learn about this area together because it is complex it's important. And I think like death and dying it touches all of us in one way or another. So in fact one of the things that's really struck me I've been working in this area since well I guess actively in the policy side of things on medical assistance and dying since 2015 when I was invited by the Deputy Minister in Ontario to co-chair the Provincial Territorial Expert Advice Group on what was then called Physician Assisted Death. And we've come a long way since then. And of course that expert advice group was struck after the Carter decision when it came down and before Parliament actually pulled itself together to create legislation. Upon some of the urgency I think the provinces and territories were feeling was at the end of the day even though this was a criminal code amendment, provinces and the territories were going to have to put it into action in one way or another. And so they realized from the get-go it would be it would be advisable to try as much as possible to avoid a patchwork approach across the country. So all the provinces and territories with the exception of Quebec which had its own legislation of British Columbia that was undertaking its own sort of assessment of physician-assisted death at that time and participated as an observer came together to develop a framework that helped to inform the direction of well inform where we are now. And of course Bill C-14 took some of our advice, rejected others. It also took some of the special joint committees advice of the House of Commons and the Senate, rejected some of their advice as well and here we are today opening up another question related to medical assistance and dying related to advanced requests. I want to loop back to this an early comment I made about this death and dying is a topic for all of us and this has been one of the most interesting things for me working in the area of policy is that I've been able to work with a number of different institutions on government related issues that didn't quite touch me the same way. Drug shortages are difficult, resource allocation challenges are difficult, pandemic planning is difficult, complex, but all of us are going to die. And so every panel I sat on, every consultation we did, every person I've spoken to, we are the topic under discussion as individuals and a society. So there's a certain intimacy about these topics which is something I haven't encountered before. So let us just acknowledge that in our conversation today that for some of us this topic will be a little closer to home than for others. It'll be a little more theoretical for some and a little very, very much a personal issue for others. So I'm hoping that we can create a space where there's room for all of these views, all of these experiences and just honor the humanity in each other as we struggle to imagine what it would mean for us to die well in Canada in a caring society that supports that. So with those opening remarks, I do want to just make a few thank yous. First, well, thank you for inviting me. It's a real honor to be here. When you look across the country, you think where are the bright spots of scholarship in areas that I work in? Here it is. This is like ground zero. So I'm so pleased to be invited to join you today. The second is to acknowledge the members of the expert panel, the Council of Canadian Academies, who I spent 16 months with working on some of the work that I'll be sharing with you today, each of whom was coming from a completely different point of view and different set of experiences. And yet we were able to build friendships and even if we didn't always agree. So that was a wonderful experience. And I do want to acknowledge to the research staff of the Council of Canadian Academies were instrumental and some of the slides we've got were co creative with them. So I do want to acknowledge them. So what I thought we might be able to do is the following start with just an opening definition of exploration of what an advanced request for made is. I think you would all know what that is. But I think it would be worth sort of exploring that a little bit. Identify its current legal status in Canada. And then I'd like to zone in on some of the work the mandate and scope and the process of the Council of Canadian Academies took in terms of its expert panel work with a focus on the work that we did as advanced request working group. And then I'd like to I'm suggesting that we conclude with an open conversation about together to consider what future implications for made this may have in Canada. So I really I'm hoping it'll be a group participation at that point as we explore that. So one of the challenges that we faced as a working group with the Council of Canadian Academies was that we didn't actually have a working definition of an advanced request. It popped up in Bill C 14 legislation. It had been touched on as a concept in the provincial territorial expert advisor groups work. We didn't name it an advanced request. We called it something else. We also saw similar concept raised in the Special Joint Committee of the Senate and House of Commons and their recommendations. But we needed a working definition. And so this is the working definition that we we had in our report. And basically, as you will well know, it's an advanced request for made as a request for may created by a capable person in advance of loss of capacity, where that request would be acted upon in the future at the point where capacity has been lost. And so this was a starting point for our thinking because without a sense of the topic we were working with, we couldn't continue. So I thought we might think about that that definition in the context of ultimately the stories. In our report, we worked with vignettes, hypothetical vignettes to try to bring the patient story, patient experience into the into the lens of the work we were doing. And so I'd like you to like to introduce to you a hypothetical man named Mo who is 86 years old and has been found to be eligible for made. In the past year, he's been suffering a number of strokes. And he's concerned that although he's currently eligible for made, he might end up suffering another stroke during the 10 day waiting period between his request and the and the actual administration of made that may prevent him from being able from from being eligible at that point to receive it. Now, his position knows that current law allows him the proposition to be able to shorten that 10 day waiting period. If there is an imminent if loss of capacity is imminent, the physician is actually not sure entirely whether or not it's certainly possible that a stroke may happen leading to loss capacity. But it's not entirely, it's not entirely clear that it is imminent. But moreover, and perhaps more importantly, Mo has expressed that he would like to spend the time he has remaining with his wife. So he doesn't want to foreshorten that that duration of time he wants to spend that with his wife. And hence, he's interested to create an advanced request for made that should he lose capacity during that 10 day period, he would like it to be honored. And so on the eighth day of the waiting period, Mo does indeed have another stroke and lapses into Oklahoma. And I'd like to introduce you to by by is 89. And she was diagnosed with dementia at the age of 78. Shortly after her diagnosis, understanding that this was a progressive disease condition, she drafted an advanced request for made with her family doctor, in which she stated that she would like to request her request be fulfilled when she appears generally unhappy most of the time when she no longer recognizes any of her friends and family, and is no longer able to perform basic tasks, such as bathing or dressing for her, her dignity is central. She's made it clear that she does not want to continue living in such circumstances when she can no longer look after herself, or have meaningful interactions with her loved ones. While she was capable, she's reiterated this request with her family doctor and discussed it with her children. At the age of 89 by who now lives in a long term care facility, can no longer express herself clearly, and is no longer capable of making decisions about her health. Sometimes she appears cheerful and content. Other times she seems agitated and sad. Vies to children believe that she may be suffering, but are having difficulty determining whether her current situation meets the conditions of her advanced request, as she's articulated. And moreover, her physician has since retired, and she is now seeing a rotating number of physicians in her long term care facility. So with these two examples in mind of people in circumstances where they may be seeking advanced requests, I think we start to see where there may be notable differences between those requests that are perhaps legally salient, but certainly clinically salient, socially salient, and even ethically salient. And so part of our work was to try to untangle some of these. And I think the key message here, too, I would like to suggest is that each person, if we sustain a patient centered approach to thinking about medical assistance and dying, as is the aspiration I believe most of the country has, is a patient centered approach means we need to reach the patient where they are. And so these two differences underline the different stories that may be associated with medical assistance and dying. And so when Bill C-14 was introduced, it was, I often frame this with my students, that it was aspiring to strike a balance between three ethical imperatives. And some of these are stated in the preamble of the legislation itself. And I'll quote from the legislation of the preamble. Parliament recognizes the autonomy of persons who have a grievous and irremediable medical condition that causes them enduring and intolerable suffering, and who wish to seek medical assistance and dying. And they also acknowledge, whereas safeguards, reflecting the irrevocable nature of ending the life, are essential to prevent errors and abuse in the provision of medical assistance and dying. So we've got respecting autonomy and something that's moving in the area of safeguards, protecting the vulnerability, even of those who may be competent in order to make such decisions. Permitting access to medical assistance and dying for competent adults, the preamble continues, where their death is reasonably foreseeable, strikes the most appropriate balance between the autonomy of persons and the one hand and the interest of vulnerable persons in the need of protection and those of society on the other. And so many of the ethical questions that have surfaced in the course that I teach on death and dying seem to find in themselves grappling with how much weight ought to be put on any one of these pieces of the triangle. Now, of course, I'm not a lawyer. I'm not looking at this through the lens of legal scholarship per se. But as an ethicist reading the preamble, I'm digging in there to find out what are the core goals that we might be aspiring towards that we're trying to find a way to reconcile. We're not even going to square them because it's a triangle, but we're trying to find where the pressure points and where the tensions are. And so it's within this context, we see the current legislation emerge. And I bet if we pulled the room, we would have a variety of views on whether or not the balance has been struck the right way. But it's within this context too that we can explore advanced requests for aid. And so what we know is that in the current balance that has been sought within Bill C-14, advanced requests for aid are not permissible. And why? Well, if within the Bill C-14, there's a requirement that immediately before an individual receives medical assistance and dying, they need the opportunity to withdraw their request. And to ensure that that individual has an opportunity to give export does indeed give express consent to medical assistance and dying. And in many ways, this particular provision is an important safeguard for ensuring that we do promote autonomy within our legislation. We are ensuring that that individual does indeed want made. And we want to be sure that there's no, that they haven't changed their mind, that there are no other factors influencing this. So, you know, the balance is leaning towards autonomy by having this particular safeguard. But when we think about this from the point of view of, when we think about this from the point of view of Moe or Vi, what it certainly means that the effect for Moe in his particular circumstance is that he really has given two choices. The effect of this particular provision is that he must either take his chances and hope he doesn't lose capacity during the 10-day period. Or if loss of capacity is deemed to be intimate, he must decide to receive made before the 10-day period is up, even if he should wish to live that 10-day period at the time he is remaining with his wife. And so it is in a way, perhaps for Moe and its felt this way, is an impossible choice. A choice to, it's a choice of balancing different risks or different goals. Now Vi, on the other hand, upper Vi, as soon as her dementia progresses to a point where she's no longer capable to make decisions about her health. Vi can no lot, she in effect, no longer meets the eligibility criteria. So in many ways, this provision wouldn't even apply to her at all. So she hasn't even got past the gate. She isn't eligible at this point for her to be able to even consent at the final point. So their circumstances, both making an advance request, their relationship to this particular safeguard within Bill C-14 is quite different. So then we might ask the question, I mean here we're talking about the issue of capacity loss, is the loss silent on capacity loss? In fact it's not silent. And here as was noted in in my description of Moe's situation, his practitioner can with another practitioner, so long as they both agree, can shorten that period of time, that 10-day waiting period, allowing him to access made whilst he is still competent. And so that shortened time frame acknowledges that there may be situations where loss of capacity may be imminent. And so in order to ensure that an individual may access made and provide consent for it, then that 10-day waiting period must be flexible enough to permit someone to do so. Now with that in mind though, one of the challenges is there's certain arbitrariness about that 10 days. I went back to the original draft of the legislation that was put out for consultation. How many days was originally proposed in that draft just out of curiosity, does anybody know? Except for Dr. Downey? Throw it a guess. That was one of the proposals. It wasn't in the bill, but you're right, because that would come up in the Senate. There were some some individuals who were making a pitch for six months. The original draft of the bill that was made available for consultation was 15 days. 15, 10 days, 6 months, 7 days, 3 days, 4 hours. You know the 10, the 10 is a bit of a, like it's a number, pulled out of thin air, but what is it aspiring to do? It is intending to ensure that you are not ambivalent about your choice. Not only that you have a chance to change your mind, but that you're not ambivalent. So, you know, there is this sense that there's something about the 10 days which has a particular purpose which is to ensure that you have a chance to, you know, have second thoughts, but also to be able to reinforce your commitment to this particular course of action, but also at the same time that 10 days is an arbitrary choice, right? It could have been longer, it could have been shorter, but here is where we are. And so in the case of, you know, but nevertheless, in Moe's case for sure, if it really, he's in a situation where he may be, because he is unable to, if he loses capacity in the current regime, he is unable to access made, then this would seem to suggest that he is left in a state of suffering. So, if it is the case that, that he, I mean, if he's unable to access made, as a weight means by which he may alleviate his suffering, then either his physician or his nurse practitioner must access other ways of mitigating his suffering which he has already previously rejected, or he must be left in a state of suffering. And so, one of the things that is particularly rich and wonderful and also challenging about thinking about suffering, is that it's subjective nature, and this is something that is, this is unique about our Canadian legislation, a distinction from how sometimes suffering is treated in other jurisdictions. This notion that suffering is subjective, pain is also subjective, our experience of pain is uniquely our own. You can find more than one person in similar clinical circumstances, both in pain, but the meaning they ascribe to that pain is very unique, and unique to that individual. So, this subjective experience of pain may mean that for this individual, we cannot, an objective assessment of pain becomes clinically difficult, and so our understanding of suffering is one that is seen through the eyes of the individual. So, Moe, his request had been found eligible, which means his medical condition is grievous and irremediable. Hence, he is in a state at that time of the request of intolerable suffering as he understands it. His suffering was intolerable to him, and it cannot be relieved under conditions that he considers acceptable. He may have declining, he may for example decline continuous palliabestation. He might have said, I don't want my family sitting vigil for 10 days as I slowly die. I prefer not to put them through that. And so he has chosen made instead. If he loses capacity during that 10-day period, his suffering may continue unabated. In other words, he may continue in a state of intolerable suffering until his death or be administered treatments that he's already rejected. My situation though is interesting. Is she suffering intolerably? I mean what we know from her particular case is that she sometimes happy, seems happy and sometimes not. Is she suffering intolerably sometimes, but not other times? Is she experiencing suffering and is this suffering unique? So, again, so suffering seems to be key central to both Moe and Vice Experiences, but you can start to see how in terms of assessing whether or not she is suffering, is this concordant with what it meant in her advanced request that she is suffering may raise some questions for those who need to make the decision about what to do next. So we find ourselves in a situation, in our current legislation, where we know that the inability to have an advanced request has real material implications for real human beings, real Canadians. But this is not purely theoretical matter, it's not purely legal matter, but it really does affect people's life choices. And so this profound sense of we are ultimately in talking about advanced request, talking about people, is a hard place to be when you're developing policy because there are so many different lived experiences out there we need to be cognizant of and yet for the individual going through this, this is the only experience that matters to them at that time. And so when Bill C-14 was introduced, within the bill there was a requirement that following royal assent, no later than 180 days later, there should be independent reviews or independent studies of three topics of which one was advanced request and of course the other two were made in the case of mature minors and the other was made where they requested on the basis of mental illness as a sole underlying condition. And that in no later than two years after that these reports, it says in fact one or more reports were to be late before Parliament. And so at the time that this was announced that there you know that the bill came out and was subsequently receiving a royal assent for all of us who've been working in the field in one way or another were puzzling over. So who's going to do these reviews? Who is, what organization, what entity, what group would have that independence that would allow it to be able to conduct studies that regardless of where you stood on the spectrum of views related to mage, you might be able to say, you know, that was the right group to have done this. And many of us who've been involved in this, advocates or academics like myself, you know the world starts to see you as, oh you're on this year in this camp or you're in that camp. And so that worry about independence was a serious one. This is where I thought it was a brilliant move in fact that the Council of Canadian Academies was tapped to do this work. Now quite honestly, I didn't know very much about the Canadian Academies until they, until they were tapped on the shoulder. I knew of them, I knew that they were an independent science body, but I didn't know a whole lot about the work that they did. But it struck me that this was a masterful move in order to really provide sort of a real vote for independence in its review. So let me tell you just a little bit about the Council of Canadian Academies. So when we're talking about the Council of Canadian Academies, it is the founding academies were the Royal Society of Canada, which sort of covers off the social sciences and humanities, the Canadian Academy of Engineering, and the Canadian Academy of Health Sciences. And so the Council of Canadian Academies is an organization that's independent, it's not for profit, it's got its founding academies indeed, who operate on its board. But ultimately what its role is to conduct science assessments, assessments of evidence in order to inform policy. What it does not do, importantly, it does not generate recommendations. So it looks at what's known or not known, relation to the topic, and of course that is comprehensive of the humanities and social sciences and the health and other sciences as well as appropriate. And to synthesize these by bringing together experts across the country to systematically look at what the evidence currently is. And so Council of Canadian Academies was tapped by the federal sponsor, which was Health Canada and Justice, to, as the quote here says, this was part of our charge to gather relevant information on the perspectives and considerations associated with these three issues, of which one was advanced request, and to reduce reports that will ultimately inform dialogue. And that this should be delivered no later than the 14th of December for tabling in Parliament. Well, we delivered at the end of November and it was tabled on, does anybody know the date? The 13th or something. 13th of December, right before the holiday break. But anyway, it was still on time, as far as Parliament was concerned. So it was tabled publicly. And we released at the same time. So the, I just want to give you a little bit of a snapshot of what the expert panel process is, because it is designed for to be a deliberative process. It took place over 16 months, starting with a planning meeting in January 2017, brings together a group of experts. The experts then look at the available evidence. They're an extensive process of looking at the literature, gray and academic literature. International and Canadian literature is available. Process of six meetings, during which time there's deliberation, on that evidence to identify and to make sense of in the Canadian context what this means. These meetings, of course, were not just a set of six meetings. There was a lot of work that happened in between meetings where panel members might work together to dig deeply into a particular area that they knew the evidence well enough to be able to synthesize and bring it back to their colleagues at the table. Then there was final sign-offs. The reports that you have access to electronically are the state of knowledge that we got to by last August. Last August. That's six months ago. It was really a green document. What do we know now? Again, also underlining that this was part of a gone-going conversation. Subsequently, we were able to present this to Health Canada and to, and then widely disseminated. One of the key things though, what this process to wasn't a bunch of just Canadian experts with a few international experts as well. There was an extensive peer review process that involved multiple experts from around the world as well mirroring the composition of our working groups in order to provide that really critical review to make sure that we were as balanced as we could be. We were covering off what needed to be covered and we had some 2,000 comments that we needed to work through based on that feedback. The other critical piece too, although part of our role was not to actively engage in public consultation, we did invite, we put out a call for input to some 500 organizations across the country who might have a stake in our deliberations and we received 59 submissions back. Which was, some of those submissions were really rich in terms of providing a perspective particularly from the perspective of those whom those organizations served to give us more insight into more of the lived experience of Canadians at this point. And then there were three scholars on the expert panel who are indigenous health scholars who also recommended that we hold an elder circle to gain some insight from some of the elders from across the country which we also did. And a key finding from that was that this was, that there was a huge gap in terms of consultation and engagement with indigenous populations across the country around this issue in part because it was lower priority given other urgent matters but it was the beginning of a conversation that I think we'll need to continue. So that gives you a bit of a sense of what the process looked like. But our work as the advanced request working group, there were 14 of us. I chaired the group. We had two researchers from the Council of Canadian Academies working with us and also the Director of Assessments from the Council of Canadian Academy was my institutional counterpart. The members were clinicians. We had legal experts. We had palliative care providers. We had oncologists. We had geriatric psychiatrists on that particular group. Physicians, nurses, people from social work background, mostly scholars, policy folks like me, folks who are working very closely on the ground. And so the question was posed that we were tasked with. What we used to call our charge was that we were to look at, answer this question. What is the available evidence on and how does it inform our understanding of made in the case of advanced requests given the clinical, legal, ethical and historical context in Canada. So we weren't just simply looking at what the clinical literature was saying. We were also looking more broadly to gain insight into locating this within the Canadian story. The Canadian story is our story. It's a story that we were accountable for. And so how might we best gauge that? An important part of our work was to understand and appreciate the context within which a conversation about advanced requests for made was emerging. What we noted was there are changing societal norms related to end-of-life care. Huge push over the last 15 years in terms of advanced care planning. The cancer care systems across Canada have been tremendous in trying to develop tools and processes and supports for families, each one of us as individuals, to have conversations with our families about what our wishes are in general if we should lose confidence. It'd be able to have those conversations so that those who may need to be making decisions on our behalf have the benefit of that insight about what our wishes might be. So we have advanced care planning that was really inviting having these conversations early rather than in a moment of crisis. We also, in Canada as we're seeing globally, are seeing an increase in the number of persons who are dealing with capacity limiting conditions increase in dementia. So I will share with you that that's affecting my own family story. So my father is as moderate dementia, he's in long-term care, and so it's been interesting as part of this work to be watching as a family member concurrently walking that journey alongside of exploring some of these topics together. So this is something that is a topic of discussion in a way that I think perhaps has been a little bit submerged but now is much more open what dementia means but it's also associated with that. There's often a lot of stigma too that that surfaces. And then finally then it reasons why somebody might seek an advanced request really turns on I think an increasing attention to empowering patients to make choices about how they want to die that we see and we see that both in the clinical from a clinical perspective certainly the legal perspective is certainly reflected in our current made legislation but also just from from Canadian saying this is this is a meaningful moment for me and my family we'd like it to be meaningful not purely a clinical matter not purely an institution matter we'd like to have some control over what that actually looks like. So that context was important for us but we were also asked to consider interestingly and I'd love to go back through our notes to find out where this ended up in the charge but the charge was what are the unique considerations in addition that ought to be taken into account depending on when an advanced request is made. So and it's specified so this was the charge that was coming from our federal sponsors the charge included before a diagnosis of a serious illness. Considerations that may pertain to after a diagnosis but before onset of suffering and then the third would be after all the eligibility criteria and procedural safeguards have been met except for the 10-day waiting period and the reconformation immediately prior to provision of made. So you could see Vi is would be right now she would fall in the scenario number two she has a diagnosis we know that to the dimensions she has is progressive it is life limiting not just capacity limiting but she at the time that she drafted her advanced request she was not at that point suffering intolerably and her family is trying to ascertain is she now suffering intolerably so they're not sure whether or not she's eligible whereas Moe over here is has been found eligible in all respects except but for this worry about that 10-day waiting period. So with through the use of being yes we worked through each of these scenarios to try to understand what are the key considerations that ought to be brought to bear and so what evolved was sort of a framework for thinking for our own work for thinking about this that were some three key considerations or sometimes members of our working our panel working group would talk about this as areas of risk or areas of uncertainty and so all of that all of this language depending on what felt most comfortable for members would come up but there would be concerns perhaps related to the status of the patient for example where the patient is in their disease trajectory early or late how much insight do they have about their disease at this point early in the disease it's a little more open further down that journey you have a pretty good insight of what this looks like the extent to which there's alignment between the present physical or emotional state of the individual and the concordance of that state with what might be written in an advanced request the currency of their express desire for made where somebody still has some confidence are they reiterating that and the circumstances in particular details related to the circumstances about what constitutes intolerable suffering for them there are also considerations related to communication the extent to which the those circumstances of intolerable suffering are indeed clear if they are consistent if they're persistent and so is their consistency that we actually have good insight into what those particular circumstances might be and then the third speaks to relationships recognizing that if somebody it has lost capacity to make such decisions then someone else must be the one who honors that advanced request or identifies when and when that advanced request ought to be honored and so these relationships these third parties do raise questions about the extent to which they're familiar with or understand enough what that advanced request is speaking to so with this framework in mind this the uncertain we noted that depending on the individual and their circumstances this was these sort of dimensions could be intersecting at times they could also be on a continuum somebody might at one point be there may be a great deal of clarity or there may be a need for greater clarity and that could be sought if early enough along the way and so the sense that these were important dimensions that could contribute to on the one hand the degree of certainty or uncertainty with with respect to whether or not the um the desire for made was consistent at the point of which it might be administered so we were curious to know then was okay that's sort of the that's a bit of a framework for thinking about these the key considerations to how they may intersect in particular cases what do we know about the Canadian evidence I mean you look to what do we already know it's not creating new knowledge necessarily but what do we know and so one obvious place to look was to see how how this advanced request for May was similar or different potentially from advanced directives and so this is one of the things we were asked to consider if you look across the country there's a lot of variation across the country in how each province and territory administers an approach to advanced directives some are proxy directives for example in Ontario it really turns on the substitute decision maker who has been identified either by law or by the individual by law what to be the one who makes the decision in accordance with the patient's wishes others for example my family in Alberta they have on record what their what their advanced directives actually are and with as much specificity as they possibly can and so this variability was something that we noted the other is that advanced directives are not specific to end of life decisions they are specific they can apply to any sort of decision that might involve you losing confidence and unable to make a decision at that time that may be temporary and so advanced directives are much broader net than what we were talking about in terms of advanced requests it's an open question whether or not we might be able to see a regime that includes advanced requests within advanced directives but I'll leave that open for now because another material consideration is that medical assistance and dying is the only end of life end of life decision that is actually well Dr. Downey will correct me if I overstate this that that is is captured within the criminal code I mean you can see negligence and so on but this is a very specific type of criminal interaction which is governed by the criminal code whereas advanced directives are not so we also saw across Canada there is increasing use of advanced directives in some form or another but it's still an area of practice that is emerging it's not consistent and many clinicians will report how difficult it is to be consistent to comply with an advanced directive if there's tension with families or if there's discordance within families about what the steps might be so in practice it's often hard to achieve but nevertheless what evidence there is seems to suggest that advanced directives have a positive to neutral effect on treatment decisions it's not harmful maybe it's neutral and sometimes it's positive so you know interesting I think you know it's sort of flagged for us more work needs to be done in advanced directives period let alone in advanced requests specifically so then we wanted to understand well guess what we've got two years experience with Maid in Canada what can we learn from from that experience we know that the federal governments in the provinces are collecting data to ascertain the extent to which there's compliance with the current legislation but what really matters in many ways for families and patients is the quality of the experience a patient is experiencing their dying process as a seamless process they're not parsing it into oh this is a criminal code adjudicated Maid thing and then there's this other set of decisions from their perspective it's actually probably part of the continuous experience in general so that it really calls on the need for more research in that particular area but the area that we do know from some of the research there were a few studies that took place before Bill C-14 came into place and it was around the time they were contemplating whether or not Maid should be permitted in Canada that showed that that again given the concern that people might change their minds that there was a sense that people had continuity in terms of or there was a high level of preference stability over time if you thought euthanasia would be an option for you or Maid would be an option for you the patients in these studies were consistent over time and very rarely would decide otherwise in the more in the intra Maid period colleagues in Quebec have been studying from the perspective of persons with dementia caregivers formal informal caregivers and patients themselves but what their perspective is on the possibility of an advance for requests for Maid and some of the early findings indicated that in fact there is that there are there's moderate to high support for the use of advanced requests in the case of dementia but and when I say moderate to high it depends on the situation so there would be you know 60 you know 50 to 70% support amongst nurses and caregivers for the use of advanced dementia in the case or advanced requests in the case of an advanced stage of dementia but that percentage increases significantly when somebody is at the terminal stage of the disease now there are I know that there's some finding there findings that are coming out that are coming from the speaking from the voice of persons with dementia to find out their views and I don't know that that has been published yet from the patient's perspective but we're we're waiting to see what those findings are so again what we found was there is evidence but there's not a whole lot of evidence at this time that we can really draw from but it sends some signals useful signals for us so we turn our attention to the international evidence which we which of course if you remember with Bill C14 or actually the Carter decision looking to what other jurisdictions were doing provided some confidence that Canada could enter into a policy approach to medical assistance and dying that could have the assurance of safeguards to mitigate some of the concerns that have been raised about possible abuses or risks associated with it so it seems reasonable that we'd look at an international experience to see in jurisdictions where advanced requests are permitted what's their experience like and so Belgium and Luxembourg and I would say they don't talk about advanced requests they talk about advanced euthanasia directives and so in that context Belgium and Luxembourg do allow advanced euthanasia directives but only when the person's irreversibly unconscious so what we know what we have available to us are not so much the story of each patient who became irreversibly unconscious there is some numeric data available to us how many people actually had a euthanasia had a euthanasia directives and who had that saw that used in the case of irreversible consciousness and in fact Luxembourg has only had one reported case of having used it so it's in the books but it's not actually being used that often in the Netherlands the Netherlands understanding of suffering and the importance of it in the due care criteria for the clinician the physician to be able to assess the suffering the patient means that the patient must have some level of consciousness so that's a material difference between these approaches and indeed they do permit advanced euthanasia directives and so it was very difficult for us to get our hands on of some of the data related to this because not all of it is reported we don't have they don't report the list of the number of people with advanced euthanasia directives but they do report the number of people who received an assisted death who had dementia as a concurrent condition of some kind so looking at those cases of persons with dementia 16 over a period of about seven years were reported to have had an advanced euthanasia directive and to have had lost their competency and to have received an assisted death four of those proved to be controversial in large part because there were questions about the the physician's due diligence in terms of ensuring that this was the patient's wish there was sort of lack of sort of due diligence ensuring that there any uncertainties were sought to be addressed either by consultation with other clinicians or whether seemed to have been some behavior around that time to suggest that that perhaps the patient did not actually want that type of intervention but 12 of them out of the 16 did meet the due care criteria so you know it there are some of the controversial cases really sort of signaled that there is it's often hard for those who are making these decisions to figure out have we got is it the right time that we got it right so uncertainty about the patient's desire for euthanasia communication and relationship with the patient physician echoing some of what we were seeing in our case studies signaling where the work would need to go if indeed in Canada such were introduced so we might think about then so what would be the potential impacts of introducing advanced requests for made in in Canada obviously there's a strong argument to be made that this certainly reinforces and bolsters a commitment to autonomy second we've heard especially from some of the call for input we heard from average Canadians who were submitting letters to dying with dignity 600 and some letters telling their stories that sometimes just knowing that there was an advanced request was an ease of suffering the ease is our mind to know that if I lose my capacity consent then I will at least know that my wishes will be adhered to but it also be may relieve suffering because it means that somebody is not in a protected period of intolerable suffering and can have that alleviated at the point where it is intolerable even if they are not competent but it does also unlike in the current regime right now where it really falls on the individual to make that choice but whether or not there even right to the very end about their whether or not their decision not to be made this does bring in other parties it would bring in other parties that there were there may be a felt burden and I was asked recently just for immediate interview whether or not this heavy burden what I thought about this heavy burden and I think in any of us who've ever had to participate in a decision about a loved one in an intensive care unit knows that you may know what the right thing to do is but it's sure hard to make that decision that you're actually grieving the loss of a loved one it's emotionally burdensome that's the nature of those decisions and so some of that is unavoidable it will be unavoidable and sometimes anecdotally we'll hear from from families who've been with their loved ones during the receiving who was receiving me and saying it was such a relief for us so there's a real variability in terms of the experience of the third party who might have have been participating in this but there may be differences between clinicians and with and with family members at least of which that for clinicians there's a real urgency to get it right because of the weight of the law that's behind them if they get it wrong so just sensitivity to that burden that may be there we heard quite a bit and I think this is something that it's more keeping in our our eyes to is that we talked about individuals I've talked about individuals a lot here too today but there are we as I mentioned very early on there's often quite a bit of stigma associated with capacity limiting conditions whether that's due to brain injury whether that's due to neurologic progressive neurological condition dementia as an example and so some niggling worries amongst some panel members and in some of the literature about what the introduction of advanced requests might do in terms of reinforcing potentially reinforcing some of these stigma some of the stigma are sort of negative perceptions and just sort of a flag that that's society's interest to ensure that we we do have a caring society that doesn't leave some some of those behind just by virtue of their group membership and then finally recognizing in Canada there are constraints on resources and a real worry that somebody might seek to have an advanced request we've heard a few cases like that in the media because they can't otherwise have their their needs met even though the resources that they are they can't access them so access to resources maybe become more of an issue rather than less and so this signal that info if we're thinking about safeguards and we've been asked to consider safeguards we really needed to think about this of two levels case specific the individual and system level so can be seeing the evidence that we had before us um we identified both legal saves well we identified three types of case specific safeguards legal safeguards we're finding the criteria for eligibility criteria for access is may be important we may need to think about what that would actually look like clarifying the role of the substitute decision maker or the third party is making these decisions that it is not their values that ought to inform this but others and that's the struggle that we we already have there may be creation of a registry where I can put my advanced request somewhere that is accessible by my clinician even if my clinicians change or my family needs a quick reference to it there may be need to be time limits on validity in Belgium it's five years is five years too long for a an advanced request to be valid or is it or do we need something as shorter so that's that's a possibility to think about you know the setting limits means that somebody could have changed their mind but if the paper from five years ago is the one that stands they may inadvertently be receiving made they don't want and then third party neutral assessments of the advanced request so that there is sort of a assurance that the advanced request was developed well with the right type of content clinical safe parts of counseling for both clinicians and for the families in the process of developing an advance request to ensure that they're informed aid in drafting them and then support for patients, caregivers and professionals understandably clinicians are worried about doing this well right they want to make sure that they do this well so what kind of training and support might be required that they don't already have but sort of emotional support may be required which may just be simply being a debriefing after or something a little more intense than that and also just more generally supports for end of life decision making which is often difficult we hear often clinicians struggle with transitioning a conversation from a conversation about treatment to a conversation about palliation and quality of life or then from there quality of life to the limits of what is possible and then at a system level the urgency of ensuring that we that whatever contribution and advanced request regime might offer that it is it continues to foster and engage advanced care planning in a way that serves us all that concurrently we see improved palliative care education and support and broader palliative care approaches and indeed one of the things that need palliative care right now is there is movement towards early palliative care you may be in the course of treatment for a disease and receiving palliative care at the same time because your quality of life your whole the meaning associated with that whole journey is as important so we're seeing that more and so some reinforcing of that systematic data collection for quality insurance a colleague one of our panel members Harvey Shipper noted to me and I share with you and I'm sure he'd be very comfortable with me sharing with you as well as this is a social innovation you know doing this is is a material change in the way in which we provide care in Canada we wouldn't we got we keep a really close eye on surgeons innovating in surgical suite so why aren't we providing the same level of attention to the quality that experience now and learning from it intentionally from the very beginning and I think the research community and a lot of the practitioner side part of the community has been attuned to this we get a little bit of mixed messaging from government on this as well but indeed oversight and monitoring our critical safeguards so where we summed up and I'll just these are final thoughts of the panel were just to remind ourselves that removing our requirement about final consent raises the possibility that somebody might receive made who doesn't want it is possible and the key issues really turns on this uncertainty about when and whether conditions of a patient's advanced request have been made which really pointed to the the reasons why some of the key considerations in that emerging framework that emerged started to identify where those areas of uncertainty might be and potentially even if this were to be introduced into Canada where some efforts related to safeguards might be now I will say though there were a number of panel members who were really concerned that no amount of safeguards will be effective to mitigate the risk of somebody receiving made that they might not otherwise wanted so even questions around effectiveness of the safeguards and indeed it's a policy choice it's a canadians you know a weighing in type of choice about what sort of risk we might be willing to take but also recognizing that some of these choices are being born by individuals and so the sensitivity that we may not know if it's effective until we've actually tried it so that that's where the social innovation comes from and some of that risk as well so here's why I'm going to wrap up I'm going to leave it here with you and so what I want the last thing I thought we might be able to talk about together was the so what so what are the future implications of this that are coming coming to mind for you we certainly found that one implication for us and I'm very aware of this is that we have knowledge gaps we need to fill that's even on our current experience about medical assistance and dying and the research community needs to show up and the research funders need to show up to do that work so there's bits of work that many of us may need to do there's still advocacy work to be done in terms of ensuring good quality of care across the country at regardless of whether or not an individual should choose made or not made but then for those who are advocating who may advocate for advance requests there's a lot of work there to be done too in order to do that and then for governments who are accountable for the delivery of such such care they're continuing I think implications for their role in ensuring that we're keeping an eye on quality and equity and the total experience in a way in partnership with civil society in partnership with researchers to do that well so those were a couple of the a few of the ones that are sort of burning for me in terms of future implications but I'll leave it there and I will hand it over to you to weigh in with what you see as some implications from from where we are today so I'll leave it there all right so first of all I'll hand you a clause ideas and expressions learn from hard experience that I'd like the future law makers in this room anybody who's ever someone who's in the depths of a very serious progressive illness to consider and one of them if I gave an example of this one call in this eight sisters and a few of them perhaps in a coma tomorrow and he said no I'm going to call one of them three months and you work down on the scrappity of the entirety and so that we go and we've got no sisters that say no no sisters that say yes we could tie the legal system for years yes so I'm wondering if in making these policies say if I were to write my own in that directive when I'd be allowed to go through the clause that says no one else can underline this directive not my child not my spouse not my siblings not my substitute legal caregiver is that going to be considered that I guess what I'm trying to say is the medical institutions are really only now coming around to the idea that it is my right to decide what is my acceptable level of suffering when I've had enough and when I want to go and how I want to go when our doctors are trained to guard life at all costs is it's the mentality so they've dedicated a decade of training to and we all have the technology this is where the need gets really especially the people that aren't really savvy with a lot of medical technology we will keep people going for decades on machines but is that living and the medical institution has to get their head around and wait for the treatment of costs because it is my life and my death and no one else should have the right to decide that and I also like the psychiatry so I want to really put this question out there based in part on a groundbreaking case that came from a believeless and neverlist correct me if I'm wrong another very young woman she was fine about 22 when she was given legal euthanasia who had suffered intractable depression her entire licensed childhood and begged the government to euthanize her and they said no you're young you can be treated you're physically apt and they said and she said no I've done this I've been doing this since I was 7 years old and I'm done they finally gave her a legal euthanization the thing that I want people to consider when you work with someone who has a mental illness especially if they want to severe mental illness that sticks to playing up are my poll when they are in a crisis they're not capable of giving consent we know that but keep in mind when they are medicated and stable and they say that I am sick of getting out of hospital all the time I'm sick of the medications bankrupted by family I don't want to do this anymore please listen to their opinion because just because they're not capable of having to pass it all the time doesn't even don't ever and we tend to see people in the broad brush that going to see it's a friend who can't possibly have any legitimate legal opinion and that is completely wrong and keep those in mind but we're dealing with in person and their decision is unhappable it's like my doctor told me she said doctors cannot stop people who die but she said we can they don't transition easily and I think that's what my family culture has to get in kind of thank you for those reflections and I think they echo I think you're not alone in some of what you just shared and some clinicians are also are with you on this they I think some of the opportunities that we see particularly let's just start but the first is I think one of the reasons why the introduction of advanced directives across the country is an opportunity for all of us is that if you get to designate who your decision maker is and if they understand what matters to you then that is one way to try to manage that to divide four sisters and four sisters who's the decision maker it's not like a majority it's not a democracy at that point and so I think that's where there's been some real effort to really really empower each one of us to identify so what are your wishes but who do you trust to speak for those wishes so that if you're not able to do so they will do that but but I think what your example underlines too is that the person who has that role what is described often as proxy or a substitute decision maker that's not substituting their values they're actually speaking through your voice in terms of your values but they also need support around them to be able to be that voice with you and so that's where sometimes the family dynamics can really create a big challenge for that individual even with ones designated for that particular case the clinicians too I mean this is really I think what it really underlines is that end of life care is not a technical matter it's social and we they're overlapping relationships there are ways in which clinicians are trained and it depends on which discipline you are too right so I've got colleagues who work in intensive care units and they they're actually they're actually more attuned to you know they need to have the conversations like we cannot do anything more we think we need to talk about other options or I think it's not just palliative care but we think your loved one is is on a trajectory towards death and we we're hurting them now with the technology whereas I think other professions like in oncology there's that real struggle and I think probably you're you're seeing it in psychiatry too the struggle there's got to be something more so there are cultures that exist that kind of that any one of us as patients bump up against and we don't even know it's there but it's that milieu that sort of fosters certain directions so here's my hope my hope is that as difficult as some of these types of conversations are about advanced requests are made if they can peel back the veil around some of these some of what you're describing bring a fresh light to them allow us to revisit these allow us to and you see this in some of the way in medical schools now are saying we need to revisit our curriculum we need to be we need to be thinking differently about how we train clinicians to have these conversations so they're not avoiding them or we also though need to be thinking too about what is it that you or I might need as a substitute decision maker to make sure that I feel as comfortable as possible making this that I you know it's a moral duty right that I'm assuming when I not a legal one well it is legal in certain cases it is a moral duty too that I want to do right after my role responsibility for you my loved one and so what are the supports we need there so you know it's I'm not sure that we're going to resolve this overnight but that if if here's my wish that a conversation about made we'll actually serve to foster a refresher conversation about these types of decisions in general I think that will have been a huge benefit for us as Canadians and we need to continue regardless of where you sit on the major topic continuing driving the need for such conversations because we're talking about human beings and their suffering and a caring society is one that seeks to alleviate that and to acknowledge that for each individual it is individual so I mean that's it's not much of a it's just a reflection back on what you were saying but I I'm with you on it other yes I know this is the one we have in Holland on the physician no real physician yeah this is what you could look into which is very serious not so much for my age anymore but for the younger age yes I doubt anybody in this room has had a physician for the last 40 years the one one and only I'm on number seven I have all my papers built out that they are my kids agree I'm going to do everything in Tony Dorey but the fact is at the last doctor I went to for a country doesn't matter but I'm saying he says that paper that in my you're my wild here that you gave me and said oh never going you're looking at that so where do I go then what your responsibility is is in the government to give people to give province of Nova Scotia especially more doctors so people and families can go to at least one or two doctors so they get to know that because if you go down complaining to the doctor every week about every little thing if I were a psychiatrist I would say hey it's a red flag access resources access resources yeah a lot of problems that have problem with that yeah I think a lot of problems that are really struggling with that in certain parts of the country at northern areas and I mean you're seeing a real move towards how can we better bridge clinicians with with wherever Canadians happen to be and they're using virtual care for that but there is it were what comes with that it was sort of we're losing it's important because it's a way to convey information and knowledge to to support people's treatment decision making but we're losing that human connection which you know 40 years of having the same GP who really knows you well saw you through your ups and your downs is going to have insight that many of us don't have and at the same time so the other part of my life is looking at ethics and social issues related to artificial intelligence and some of the so this sort of underlined some of the risks the more that so the we lose the human dimension of this and it becomes more of a technological matter then you having a document in your file ceases to tell your story it's just a document one of the what we know about for example informed consent informed consent's not a document with a signature it's the conversation it's the deliberation it's the reiteration it's the human interaction it's the that really really matters and so I take I take you know I agree with you we need to in training of clinicians in creating health systems that continue to foster that we don't lose that we can't lose that yeah so one of the implications that that I see is we talk about doing these advanced requests and doing like if and then statements you know I can't recognize my family if I can't form a sentence but when you talk about people with dementia or those types of and even mental illness how do you define that recognizing your family like today what about tomorrow what about if you recognize them again tomorrow and then you forget the next and so I worry about those if and then statements actually being concrete enough to make the decision that that line has been crossed because it's going to go back and forth all the time and it's it's not really it would take a very long time to properly kind of define those just from a policy perspective to meet all those requirements it would be very difficult and that's one of the issues that I kind of see with the advanced requests is how do you draw that line and how do you define that line particularly in the case of oops oopsie let me see if I can get back to oh okay we're singing I was okay so imagine that slide it's got the middle section where you're not found eligible yet for maid but you that okay so you know I guess it depends on where you want to locate the risk right so it may be it's like like god is here you know like oh the angels so let's let's let's just pull up this this slide here it's there okay so this is where the maybe material difference between here and here right so here somebody may have a so for example being eligible for maid doesn't mean that you don't have dementia you can have dementia and be confident to make a treatment decision but the and make a request for maid as a result of suffering that you're experiencing as a result of let's say an advanced cancer right so dementia by itself is not I would be really worried about seeing it becoming a criterion for exclusion it's certainly not the case and I think it's to your point as well somebody can have so with a mental disorder could also have acute episodes of the mental disorder and then have a periods of lucidity and confidence and clarity right so and I'm seeing this in my own father early yeah probably didn't want him to do his banking anymore but he could do a lot of other things now it's a little different right so it's sort of a moving target so what we could say so let's let's so a dementia ought not to be an exclusion criterion and it really speaks to we care about dementia because of what its effect may be or may have on competence right or ability to make a decision but in the case of somebody who's already eligible has been found eligible to maid they've made a competent request and there's a period of waiting and then it would be administered we might say well what are the chances that they might change their mind well you know it's let's imagine and in mom's case he's talked about it his family support of probably not a pretty high risk and so he is the one who's willing to take that risk of changing his mind right in the case in the second vice case you're right so how could she describe adequately and help her family understand adequately what it would mean for her to be suffering intolerably and what does that look like for me now so let me just give two two sort of examples and I think sometimes it turns on there's some philosophical discussion about whether or not you know if somebody who becomes it's in a state of advanced dementia if they become an entirely different self but an entirely different set of interests and preferences and values in which case are we killing somebody else so we might see historically are they killing another a killing a person and so I think there's a lot of uncertainty about what the trajectory of of that disease might be my dad's a he's content he's at home in his long-term care facility in fact he's still very much my dad even though it he's he's it's almost like he's more acutely my dad in certain respects that is no longer masked by other sorts of you know sort of social behaviors he's lovely absolutely dear but I was at a CIHR review panel meeting I was sitting outside had to recuse myself so did this other researcher we were chatting in her experience though completely different with her mom her mom who was a gracious loving caring mom always was very supportive of her kids and her daughter the daughter I was speaking with her mother the trajectory of her illness was that her mother was berating her every visit she went she was it was her mother was no longer the mother she she knew and so but she you know bonds of affection but she was constant she was there was not her mother's fault and yet there is there was the sense of who is this person and she's my so this sort of this sort of uncertainty like who is is this still the person so but it turns comes back to this question of who bears that risk so is the risk really you and I saying I'm willing to take the risk that maybe you will misinterpret my wishes and I will you know maybe perhaps I'm happy some days not so happy other days and okay you did your best to interpret this I've prepared you as well as I can to interpret me at this point as opposed to the risk being seen as the risk of the third party who making that determination and I think there will be some who will say I'm willing to take that risk because there is it doesn't matter what that what it looks like for me at that point that's not a state that I want to be and I'll give you as much details I can and then I leave it up to you and I I grant you permission to maybe get it wrong but how do you develop policy with that one so you can do that an individual but how do you develop policy I don't know right that's the work we need to do right but but I guess yeah yeah yes one last question so in my work as a clinician I see lots of people back in the Geriatric population who have a disease that will probably lead to their demise in five or ten years yeah but they are sort of being medically managed and they're coping however it does have a very negative effect on their their mental health and they often express sentiments of oh just let me die like I don't want to be a burden just let me go and so I'm wondering it may would ever be eligible to them or ideally is this being taken as an opportunity in the medical world that's sort of a a big sign that this is a patient subgroup that needs to be managed better so has there been any talk about this sort of situation at all I guess it was a couple of years ago I was on a panel there was some an international end of life care conference and we were talking about frailty and seniors with multiple conditions and the convergence of all of those means you know a life you know for some was experienced with suffering right and so that suffering is not is real so you know so the question might be there are likely one see the combination of those disease conditions or one of those disease conditions that individuals death so they you know they might meet the eligibility criteria foreseeable death severe and incurable you know and yet at the same time there's this thing about the suffering which seems to be elements of its seem or they invite management in some way so it's interesting to hear some of how the conversations related to managing suffering of frail of frailty are converging with conversations about palliative care not palliative care as as a trajectory towards death but what the competencies associated with managing suffering addressing suffering that could be built into care of the elderly who are experiencing frailty now now we might say well but then are we doing that just so as to avoid their autonomous choice to choose made we're addressing the suffering and you know we're addressing the suffering to the extent that we can I mean it in itself is is a moral call to us to respond in some way and where we can and then we we really ought to respond in some way now it may be it may not be entirely possible so my 103 year old grandmother who's barely see has all of her cognitive capacities I saw her this summer and she said you know I wake up in the morning and I ask myself why am I still here like what purpose of my serving like it not sort of like what are my tasks but rather you know like what's more of an existential type of question but that's an interesting question is she suffering from that there's an element of suffering from that does she want to leave this world not yet you know so you know there are forms of suffering which are moments of reflection for individuals that might lead some to say yeah I've got to I've got to leave and others to say I've got to say so getting it back again what does this mean for this individual but there's skills involved with that right isn't there like it's not just okay we're going to give you a new new prescription we're going to manage your going to do med rec with you it's like yeah and how you know so what gets you up in the morning what what was the last really special thing that happened to you is a different kind of conversation that is requires time and a little bit of confidence too I imagine to have that so anyway there's so many strands we could go with today so thank you very much we'll be out after the round of applause thank you everybody