Exploring the Council of Canadian Academies' Reports on Assisted Dying — Feb. 4, 2019

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Exploring the Council of Canadian Academies' Reports on Assisted Dying — Feb. 4, 2019

– Good afternoon everyone Thank you so much for joining us today and joining us for our very first National Webinar of 2019 My name is Kelsey Goforth and I’m the support and care navigator here at Dying With Dignity Canada I’ll be helping out with facilitating the webinar this afternoon We’re starting off this year by discussing a topic of strong interest related to an issue that is close to the hearts of many of our supporters As many of you know, a clause in Bill C-14, Candidates Assisted Dying Law required the federal government to commission an independent reviews into the future of the right to die law Six months after legislation passed, federal leaders announced that the Council of Canadian Academies or CCA would study the possible expansion of Bill C-14’s eligibility criteria to include three groups who don’t qualify for access under the current rules Mature minors, individuals whose primary medical condition is a mental illness and individuals whose right to a peaceful death is out of reach as a result of the ban on advance requests After two years of study, those reports were released in December, 2018 and today we are joined by individuals who were instrumental in that process For today’s webinar, we will delve into how the teams of researchers went about their work and explain the group’s key findings, with a special emphasis on the report on advance request for assisted dying Before I introduce our speakers for today, I’d like to turn it over to my colleague Maureen Aslin Maureen joined our team in September as our education and engagement officer She will now give you more information about our End in Mind Webinar Series – Thanks Kelsey I’m Maureen Aslin and I’m the Education and Engagement Officer here at Dying With Dignity Canada Dying With Dignity Canada launched the End in Mind Online Education Series in early 2017 The purpose of these webinars is to engage Canadians on a broad range of issues related to death, dying and planning for end of life We hope that by participating in events like these, you will come away informed, intrigued, and best of all empowered We will be sending out an email after today’s webinar with a survey You can give us feedback about what you liked, didn’t like about the presentation today and also let us know what topics you’d like to see in the future and as always, thanks for your support Back to you Kelsey – Right, thank you so much Maureen Following the presentation by our speakers Following the presentation by our speakers, we will have some time for questions from the audience Many of you sent in your questions ahead of time, which we greatly appreciate it However, if you would like to ask questions during the Q&A section at the end of the webinar, that is an option as well To do this, please type your questions into the Go-To Webinar side panel on your screen and we will read the question out for the panelists to answer We have a lot of people signed up today, which is fantastic But we may not be able to get to everyone’s questions If by the end of the webinar, you have any outstanding questions for us, feel free to email and we’ll try to get the appropriate person to answer those questions for you You will also have the opportunity to ask any final questions and share your feedback in the survey that will go out in a few days as Maureen mentioned Also, please don’t worry about taking notes as the webinar will be recorded for you to watch later on One final note before we get into the speakers for today, you will notice in the email that went out from Go-to Webinar that there are two ways to listen in You can either use your computer audio or your telephone We encourage you to listen to the webinar using your computer audio if possible While a phone number is provided, it is a local Toronto number and long distance charges may apply, depending on what your long distance plan looks like By listening through your computer, no charges will apply and you can participate fully in the conversation Next, I’d like to begin by introducing our speakers for this afternoon First, we will be joined by Craig Tijs Creutzberg Tijs is the director of assessments at the Council of Canadian Academies As director of assessments, he oversees all of CCA’s ongoing and incoming assessments Prior to join the CCA, Tijs was a partner at the consulting firm, Hickling Arthur Lowe Corporation where he specialized in public policy, public administration and strategy in the areas of research, innovation and economic development He has conducted a wide range of science and technology related studies for municipal governments, provincial and federal departments and industry groups across Canada And has authored a number of research papers on innovation and related governance Tijs began his professional career as an engineer working in the auto and ICT industries before turning his attention to the policy issues associated with innovation, science, and research After completing his Bachelor of Science in Mechanical Engineering from Waterloo, he pursued a Master’s in Science and Technical Change Industrial Strategy at the University of Manchester and Manchester Business School, followed by a PhD in Political Science

at the University of Toronto He has been a research fellow with the Moet Centre for Innovation Policy and with the program on globalization and regional innovation systems at the University of Toronto and has taught political economy at Carlton University After Tijs, Jennifer Gibson will take the stage Jennifer is the Advanced Request Working Group chair and is the Sunlife Financial chair in bioethics and a director at the University of Toronto Joint Center for Bioethics Jennifer has a PhD in Philosophy, specializing in Bioethics and Political Theory Her academic work focuses on pragmatic and collaborative approaches to addressing ethical issues and organizational and health system decision making Jennifer has advised government on policy issues such as public health emergencies, critical care triage, drug funding and supply and medical assistance in dying In 2015 and 2016 Jennifer co-chaired the Provincial Territorial Expert Advisory Group on physician assisted dying and was an expert witness to House of Commons and Senate Committee deliberations on Bill C-14 At the joint Center for Bioethics, she commissioned that JCB task force on medical assistance in dying, which is collaborating with the health institutions, professional colleges and other provincial stakeholders on the ethical implementation of MAID in Ontario Jennifer serves on the executive committee of the Dalai Lama School of Public Health, the Institute for Global Health Equity and Innovation and the Institute for Psychosocial, Palliative and End of Life Care In addition to her research and service work, Jennifer teachers Resource Allocation Ethics and the master of Health Science Program in Bioethics and Ethics of Death and Dying to upper year bioethics specialist students in the Department of Philosophy and supervises graduate studies in the Collaborative program in Bioethics at the University of Toronto Following Jennifer, we will be joined by Shanaaz Gokool who many of you are familiar with of course The CEO of Dying With Dignity Canada Shanaaz is a lifelong human rights activist She began her campaign and career in the 1980s in Nova Scotia where she worked on promoting racial equality and inclusion as a youth leader in a number of community organizations She holds undergraduate degrees in Political Science and Human Rights and Equity Studies She has led numerous grass roots initiatives in the Greater Toronto are and was chair of Amnesty International Toronto Organization between 2009 and 2014 She was a member of the Amnesty International Speakers Bureau and has been a public spokesperson for various human rights issues She brought her diverse skillset over to the nonprofit sphere working at organizations such as Amnesty International, Canada, Innocence Canada and Lead Now .CA Under her direction, Dying With Dignity Canada has become the leading national organization defending Canadians end of life rights and a go to authority on medical assistance in dying Thank you to all of our speakers for joining us today To start us off, I’d like to welcome Tijs who’ll be speaking to us about the Council of Canadian Academies Study and the process the research teams went through as they completed their reports Over to you Tijs – Thank you Kelsey Good afternoon all and thank you for tuning in this afternoon I’d like to start though with a thank you to Dying With Dignity Canada for this opportunity to present the findings of the CCA report on advance requests But not just that, but also to have a discussion about the report And one of the goals of carrying out this assessment is to inform national dialogue and I think this type of opportunity lets us do just that and I thank DWD, Dying With Dignity for that So my job this afternoon, is to set the stage for the presentation by Dr. Gibson on the findings of the report Dr. Gibson of course was the working group chair of the advance requests report and I will do that by answering why these studies and why the CCA to undertake these studies and as well as what we were asked to do and how we went about doing our work And let me just get this set up here So let me begin then with what we were asked to do As was noted in the introduction, it’s a genesis for these studies came out of the legislation on medical assistance in dying And in section nine of the legislation, there was a requirement that there be three independent reviews on aspects of medical assistance in dying related to the topic areas The three topic areas, mature minors, advance requests, and mental illness as a sole underlying condition

Now, with this we, the CCA, received a letter from the departments of Health and Justice Canada to asking the CCA to undertake this and they did so in part, on the basis of the CCA’s past experience in carrying out in depth assessments on difficult issues To date, we have completed over 45 assessments in the 14 years that we’ve been in operation And so they came to the CCA, asking us to take this on In the letter there, you can see on the right, there’s a reference, there’s a quote and I think this quote really captures the spirit of what we were asked to do And it’s to gather relevant information on the diverse perspectives and considerations associated with the three issues, and to produce reports that will ultimately inform dialogue Now, in addition to that, we were given two years to complete our work, and to deliver these, no later than December 14th, 2018 for tabling in parliament Now as important, as what we were asked to do is also what we were not asked to do And, first on this list are public consultations The government was clear that we not undertake public consultations and in part because these reports are seen as really the first step to pull together what we know on the topic and then to launch into public consultations So we did not engage in the public for these reports Second, we were asked not to make recommendations or advocate policy positions Now, this request from the government is consistent with the CCA’s work on assessments and none of our work, none of our projects make recommendations All of our projects seek to answer questions that are put to the CCA In addition to that, we were asked not to evaluate the current law As some of you may be aware, the law is subject to a five-year review and these assessments are not that review And last point there is that we are not to take positions on the pending legal challenges that are now underway And of course the panel was very tempted to weigh in on all of these issues And so it was very much part of the chair’s roles on all the working groups to make sure we don’t go into these directions Now a word about our process As I mentioned, we’ve done that many of these now and we’ve developed a fairly robust assessment process And I’d like to go through this briefly with you And this project was different in some important ways Of course its size, we were asked to really take on three assessments simultaneously But apart from that, we did try to stick to our core process closely And as with all of our assessments, they all begin with a question And in this case, the question, we began developing that question early in January of 2017, by way of a planning meeting So after we had received the letter in November, we organized a planning meeting to really decide how to carry out this assessment And with the input from the sponsor, with Health and Justice Canada, with experts, with our Scientific Advisory Committee, we developed a set of questions that would satisfy what was being asked to the CCA and these are the questions that would be put to the panel to answer And in addition to that, at the planning meeting, there was a discussion about what types of expertise we need to have around the table in order to answer the question So in this case, we’re looking at the expertise, the professional expertise and experience that we need And with that information, we sought to recruit the panel in which we did in April, 2017 and we recruited a panel of 43 experts, and collectively, this group began their work in earnest, in May of 2017 and in May they met for the first time and this was one of six meetings that the panel would have all the way through to July, 2018 So a little over a year And in these meetings, this is really where much of the work took place This is where the panel’s got together to identify the relevant evidence to discuss it and assess that evidence and ultimately, to interpret what it all meant

They were supported, of course, with the CCA staff who were helping the panel write the report And then of course, in between these meetings, there was a lot of interactions between panel members with CCA or teleconference calls, all the way throughout the year And in the lead up, following, once we had our report, a draft report ready in May, we sent it out for peer review, and more about peer review in a moment But this peer review process that led to a set of comments which were reviewed and the fifth panel meeting, and after which there was one more meeting before the panel met by the way of teleconference call for final sign off And it’s at this point in the process where we asked the panel to sign off on the content so that they essentially agree to what’s in the reports Now, once we’ve got sign off, the reports go into a publication process and this occurred over through August to November of last year And in November, we held a sponsor briefing At this point we gave the sponsor, Justice and Health Canada an opportunity to review the findings of the report prior to its release in December And of course, these reports were tabled department, in December 13th, 2018 Now here’s our panel and just a note on how we organize the panel 43 members were divided into three working groups One for each of the topic areas and each working group is overseen by a working group chair, and those chairs and the working groups were all overseen by a chair of the entire panel And in the front row of that picture, you can see of course Jennifer Gibson on the right, chair of the Advanced Progress Working Group and next to her is Dr. Quam Mackenzie, chair of the Mental Disorders Working Group and next to him we’ve got to Honorable Marise Desean who was the overall chair of the panel and next to her as a Dr. Don Davies, chair of the Mature Minors Panel Now, a word on the evidence that the panel considered From the very outset at the planning meeting, it was recognized that it was an important to consider evidence in its broadest sense So in this exercise, we looked widely to health disciplines, to ethics, to social sciences, humanities and law to identify the relevant publications, relevant research in addition to that, we look to international, other countries, international sources and translated a number of documents as required We looked to professional standards, guidelines, regulatory, legislative, compliance materials, policy documents, again inside, outside Canada, and not least media reports In addition to that, we also ran a call for input This call for input, through this call for input, we invited 500 organizations that were involved in MAID or affected by MAID to submit evidence that they wanted the panel to consider in their deliberations And through that process we receive 59 submissions, including one from Dying With Dignity and these submissions really did form an important part of the evidence base considered by the panel and their reference throughout the reports Now in addition to the call for input, we held an elder circle and this was really carried out at the suggestion of our indigenous panel members who felt it important that we engage with elders as it is the elders that can speak to traditional knowledge on this subject matter And a short note on our quality assurance steps before handing it over to Jen I mentioned the peer review of the reports We have a very extensive peer review process It’s in many ways more extensive than what you get in academia We more rigorous, we reach out We try to ensure that we have reviewers representing all the knowledge areas on the panel So in total, we recruited 34 external reviewers, 14 of which came from outside of Canada and collectively, they generated around 1200 comments on all three reports And all of these comments were reviewed

at panel meeting five, by the panels going through each one and deciding which comments needed to be taken into account and the redrafting of the report, revisions to the report And as I mentioned after sign off, after the panel has signed off on the report, it goes through a publishing process and it’s here where we do fact checking We check every reference, every data point in the text, make sure they’re correct We do multiple edits, and then there’s some design proofing that occurs and finally a translation process And so with that, I’m going to hand it over to Jennifer Gibson who will talk to us about the findings of the advance requests report – Thanks so much Tijs for that insight This is something that our supporters have followed along with for quite some time I think that having that opportunity to get a better sense of what the process looks like is extremely valuable to them So thank you so much for sharing that with us today – Over to you, Jennifer We can’t hear you Jennifer Oh, perfect – Here I am So I hope you can all hear me and I’m just also wondering too, if you can see this screen, my screen – Yeah, we can see your screen, but if you want it to just turn your webcam on (laughs) – There’s a lot of steps here There we go – Perfect, thank you – Are we all set? Thank you so much for the invitation to join you today and, I just thought I might start with just a little bit of a personal reflection So I’ve been working in this area of reflecting on ethics policy, legal, clinical, social issues related to medical assistance in dying since, 2015 And now you would say, well, it’s only the last four years I’ve been thinking about this, but in fact, we used to talk about ethics and euthanasia, ethics and assisted dying in our philosophy courses in our courses with clinicians And in many ways, those were more theoretical questions because at the time, these would not be permissible in Canada And so when I was invited to co-chair the then Provincial Territorial Expert Advisory Group on Medical Systems, oh, we called it physician assisted dying at the time It was both a tremendous honor and also a very daunting task to move from thinking about what was primarily at the time, the theoretical matter into something that would have a direct and meaningful impact on Canadians This has continued This journey of four years has continued and it has been one of the most meaningful processes of my professional life and also one of the most difficult, but difficult in a way that I think really touches at the heart of what it means for Canada to care for each other and each of its members And all the diversity of views on what it means to care for somebody at the end of life I think we all have a stake and we’re all invited to have that conversation And so I’m really grateful for the opportunity to have this conversation with you So the report of the advance requests on advance request for medical assistance in dying was drafted by 14 individuals from across Canada A variety of different views, individuals with clinical experience, legal experience, policy experience, different disciplines So really a really interesting mix of 14 people who were bringing expertise to the table, their own lived experience to the table and also some insight from research from a disciplinary perspective It was diverse At the table, there were a range of different views about medical assistance in dying, but I think what brought us all together was the shared commitment to try to understand what is known currently, what is not known about advance requests What do we know from the current literature on advance request? What do we know internationally about how this is practiced or not practiced in other health systems So we can bring this to the table to try to synthesize this in order to inform the continuing Canadian conversation And also of course our sponsor was parliament But ultimately I think at the back of our minds, we were thinking this was more than just providing a report to parliament

It was also providing something that we hoped would be helpful to foster the conversations that organizations like Dying With Dignity and all of you as members might be interested in and other parts of civil society as well So we’re hoping that we’ve been successful in helping to foster that conversation But let me share some reflections on what came out of our findings So one of the things that we ran across right from the very beginning was we didn’t have a definition of an advance requests It had been proposed in Bill C-14 I guess I’m thinking back I think it was terminology that was used and in both these special joint committee report up to the Senate and that was a comments and then prior to that, the Provincial Territorial Expert Advisory Group but at no point had we sat down to actually define what we meant And so on the screen here you’ll see the definition which we used in our report but at the heart of this, what we were thinking about an advance requests for MAID We were thinking about a request for MAID by a person who’s competent at the time of the request, but ultimately is worried about losing cognitive capacity to consent at the time that MAID would be administered And let us keep in mind that the context for this was Bill C-14, our current amendment to the Criminal Code, which requires that prior to MAID being administered, the individual who has requested it must make an expressed consent to having MAID administered So an advance requests for MAID would in fact have the effect of eliminating that final consent at the point of administration And further to that, the other recognition was that even having made a request for MAID, the law also 10 clear days during which time somebody would be able to change their mind if they were so moved And so again, there was that So that would be an advance requests which would revisit what the purpose of those 10 days might actually be So this was our starting point for the deliberation Bill C-14, what was currently permitted and this new concept of an advance requests, as had been posed to us Now, the broader context though for our deliberation was we really wanted to be thinking about this from a Canadian perspective Our obligation and our duty and obligation was to reflect on what does this mean for Canada? What does this mean for Canadians? And so we were attuned to this broader Canadian context, which is what reflects certain changes in societal norms around end of life care An example might be societal norms related to and encouraging each one of us as Canadians to engage in advanced care planning and increasing focus around sort of building care around the patient A patient-centered approach So that was part of an ongoing Canadian conversation out of which this unique narrow one about advance request was coming We’re also aware that in the Canadian context, some of what was driving the conversation about advance requests for MAID was a growing awareness of and growing incidents of what we could call capacity limiting conditions Dementia being one that we would immediately think of But there were also other types of capacity limiting conditions, not limited to dementia that some Canadians may be experiencing at this time or feel that they may be at risk of experiencing in the future And then the third was there was an understanding, particularly from where we’d already been learning about medical assistance and dying in Canada and the consultation that led up to that But there were multiple reasons why Canadians might seek to make an advance request for MAID It might be on the basis of sort of a desire to exercise There are autonomous wishes and values and preferences, to have control over what the manner of their death might be So one of the other reasons was a concern for providing an appropriate response to suffering and avoiding future suffering And then some real and perceived concerns about the availability of alternatives in order to address people’s needs related to the alleviation of suffering within our broader healthcare context So this was the context within which advance requests for MAID were emerging We’ve been specifically asked in the sponsor’s request to consider, whether the similarities or differences or potential implications associated with when somebody might make such a request or the conditions under which such a request might be made and they specified what our own thinking So what about when a request is made before someone’s even had a diagnosis of a capacity limiting condition before they had been diagnosed with a grievous and irremediable medical condition? Or what about after they have been diagnosed

with a series and incurable medical condition that is not yet meeting the criteria for MAID Or in the third circumstance, where an individual might actually be eligible, have been found eligible for MAID, have made a competent request and is found eligible for MAID, but is concerned that they may lose capacity during the 10 day clear days after that request has been made and before MAID may be administered So with those broad scenarios, we spent some time thinking about some sort of unique cases that would help us to better understand some of the key parameters that may be important So the key features of such conditions that may be particularly relevant for our thinking So these vignettes and if any of you had a chance to actually look at some of the vignettes in the report you could see how we were trying to understand from a patient’s perspective where that request may be coming from to give insight into what factors might be influencing an individual’s request at each of those three, in each of those three scenarios What we learned through that analysis was that there seemed to be a framework emerging in our thinking that flagged that they were unique considerations related to the status of the patient For example, the extent to which there was alignment between what was written in the advance request outlining, for example the circumstances under which an individual might wish to have and an advance request for MAID administered and then their current physical conditions They were also conditions, considerations related to the status of the patient It turns up where in the trajectory of the disease they might actually be And so there was, you know, this seemed to be a really important consideration for us These circumstances outlined within an advance request for MAID and in relation to the current condition of the patient This pointed us in the direction of also needing to think about as part of a framework for analyzing this, a clarity of communication So the extent to which there was clarity, consistency and persistence in the communication of the request for MAID So are the circumstances we might ask, are the circumstances and the advance requests for MAID clear and understood by those who would then need to say, and it’s at this point that MAID ought to be administered And this point, it does then in the direction of a third critical component for our thought thinking, which was the strength of the relationships, recognizing that, in the case of an advance request for MAID where the individual has indeed loss competence, someone else at a third party, must make the decision at what point that advance request ought to be honored So the strength of those relationships became a critical piece The extent to which those third parties actually were familiar with and understood the patient’s advance request and we’re in some cases recognizing that this might be family members Also to the extent to which they might be supportive and willing to honor that request Now, some of them, some panel members described this is areas of uncertainty These were unknowns that might point us in the direction of thinking about each case It’s seeking to better clarity about each of these three pieces Others describe these as potential areas of risk where we weren’t really sure whether or not all three of these elements were sufficiently clear that may elevate the extent of risk that somebody may be receiving medical assistance in dying in a way that may not be consistent with their request And so, but nevertheless, what was most useful for us about this using the vignettes, relations and scenarios, it gave us a way to think through the variety of different scenarios within which an individual or individuals might seek medical assistance in dying through an advance request So what we wanted to learn though is it would be scenarios It started to sharpen our thinking as well about what kind of knowledge we really needed to be seeking So what kind of evidence would be useful to us? And of course, one area that we wanted to look to immediately was what we could learn from current Canadian practices in two key areas What do we currently know about how advanced directives are actually operating and keeping in mind that we were actually, we didn’t want to move too quickly from simply assuming that an advance request, an advanced directive would be the same thing And so I’ll say something about that in just a moment And then the second major area that a potential learning that we looked to was by this point, we were two years in to the experience in Canada of the legalization or the decriminalization of medical assistance in dying And so we sought to find out, what do we know so far about that experience that could help to inform our reflection and our deliberation on advance requests

But we learned when we looked at advanced directives was that advanced directives they were legislation varies across provinces and territories In some provinces there is, it’s possible for an individual to make a personal directive and have that recorded and registered In other provinces, greater emphasis is placed on who may actually be the one who executes a patient’s wish So a proxy So the proxy directive approach So there was a bit of a patchwork across the country in terms of how these approaches are practiced What would hold them together would be a commitment overall to seek to honor the preferences and wishes of an individual in the case where they may not be competent to make a treatment decision And that would be the other observation with advanced directives are not limited to end of life care or a care in the context that might be most familiar to those who might be considering medical assistance in dying Advanced directives can be used in the context of any type of treatment decision where there’s the risk of losing capacity We’ve wanted to have a look at, well, what do we know, particularly from the clinical literature about how advanced directives are actually practiced What do we know? And there isn’t in fact there, although advanced directives, there’s anecdotal evidence about their use The actual clinical evidence about their effectiveness is currently limited this time It’s limited, but what was there was signaling that in fact although limited, the evidence was suggesting that there was at least positive or neutral effect on treatment decisions So this sort of signaled for us on the one hand that there may be something here to be learned, but we also needed to see more research and understanding in this area to really benefit from that experience So second, we moved on to looking at, so what have we currently learned about medical assistance in dying in Canada? And some studies, there were very few studies at this point but some studies underlying, but there seems to be some evidence of high preference stability Now what do we mean by that? The worry is that once somebody has made a request and they lose capacity, their worry is that they may change their mind And so, some studies, one or two studies actually pointed to the fact that often people maintained over time a desire for medical assistance in dying So that high stability, but again, this was one or two studies So a very limited, a number of studies at this time but suggestive of an area that we might want to pursue further to understand And so particularly in the area of advance requests and dementia, there’s some research that’s coming out of Quebec that is starting to, just seek to understand from the perspective of caregivers, nurses and persons with dementia, about support for advance requests in the context of dementia And so in these particular cases, some of what the studies that is currently reported at this time shows that they’re amongst, for example, registered nurses and caregivers, there is high support Moderate to high support for the use of advance requests related to dementia, persons with dementia But especially so in or actually a higher rate of support in the case where the person actually is in the terminal stage of the disease So again, the story we took from most of this was there were some interesting experience out there that we couldn’t quite get our hands around, but there was some suggestion about some possible avenues where we might learn from each other, but also we needed to focus more attention to foster that learning So the second area we might turn to is international evidence Belgium and Luxembourg both permit what they refer to as advanced euthanasia directives And in Belgium and Luxembourg, this is permitted in the case where somebody is irreversibly unconscious So if someone’s irreversibly unconscious, and they will not have the capacity to change their minds And so there is some data that comes out of Belgium and Luxembourg, but the data at this time is extremely scarce And just in terms of sheer numbers, so we couldn’t gain a whole lot of insight at this point The Netherlands on the other hand allows advance euthanasia directives, but only when patients have some level of consciousness And you might ask yourself, well why consciousness? It’s because the way in which medical assistance in dying is understood in the Netherlands is anchored to the experience of suffering of that patient So consciousness as a requirement for the experience, the ability to experience suffering There have been some of the data is publicly reported

but we actually needed to seek permission from the regional euthanasia review committees for additional data to better understand some of their experiences And their particular case, they were some cases of persons with dementia who received medical assistance in dying, having had an advance euthanasia directive But nevertheless, some of those were also some of the most controversial touching on things associated with euthanasia communication and relationship with the physician And I think before I move forward, I just want to make one observation, which is that a key lesson, I’ll speak for myself personally A key lesson that I learned through this is how often the way in which dementia is described is as if it’s a single disease with only one type of manifestation And having a parent who has moderate dementia, I can see now how there is a journey with dementia, which means that in the early phase in the moderate middle phase, capacity may be, can be capacity for certain types of decisions and in the advanced stage that may be less present So one of the things that I’ve taken away from this is how important when we do talk about dementia and the context of medical assistance and dying and indeed in the context of advanced directives or advance requests, how important it is to think about this sort of broad experience of dementia and the various steps along that journey that a patient and their families might follow and how capacity may wax and wane over that time It’s complex, but also really speaks to the unique experiences of any one individual with dementia and I’d love to be able to, in all conversations we may have in Canada about this, keep that in mind that it’s not monolithic, that there is a variety of experience within that And so much of the concern and associated with the use of advance request records has really turned on in the case of advanced dementia where it’s not possible to have that engagement to confirm with the patient with their wishes might be If there’s an angst, it would be in that particular area So we were asked to consider what potential implications or impacts might arise from introduced Say if Canada were to introduce advance requests for medical assistance in dying Certainly many of you will see some of these and these will resonate with you, sort of supporting a core commitment within Bill C-14 for respecting the person’s autonomy Also about providing relief from suffering, particularly amongst those who may no longer be able to speak for themselves and would like to be able to ensure that their future suffering will be responded to in a manner in which they would see But it’s always also recognized We heard this from some of the submissions that this necessarily involves others involved in making the decision at which point advance request should be made On the one hand, this can create a decision making burden for them Is this the right time? Is this when my family member would seek to have an advance request or indeed for a clinician both who might be asking that question But also some of that relief from suffering and the burden may also be in knowing that or family members, knowing that their loved one is actually having a death of their choosing, even though they do not have a voice So often there was this push and pull in terms of how we understand suffering in relation to the burden There were some concerns right raised in some of the call for input that was focusing on what implications, the introduction of advance requests for MAID might have in terms of societal perceptions of persons with capacity loss What implications might this have for the way in which we view individuals with dementia or the we indeed as ourselves, might see dementia in relation to our potential future, our futures and what our wishes might be? So somewhere, societal worries about how we ensure a caring society for persons with capacity loss that this does not inadvertently foster some of those, some of the stigma that may arise here And then finally, some of the potential impacts and concerns just simply about how external factors access to resources to support individuals who may be approaching capacity loss, ensuring that those are widely accessible and it’s an empirical question for which we don’t have an answer How some of the availability or lack of availability of such supports may actually influence a decision to draft or to create an advance request We were also asked to consider again if medical assistance in dying were to be introduced

in such a way that advance requests were permitted, what kind of safeguards might be important to consider? And we found that the safeguards fell into two broad areas System level safeguards and key specific safeguards System level as in safe guards that might be the responsibility of governments and the health institution, whereas case specific requirements that are specific to the actual individual who may be seeking to advance request We heard and saw in the literature consistently a real focus on a safeguard potentially associated with advancing and reinforcing, education and engagement in advanced care planning, expanding that conversation about how we die in Canada and ensuring that that is rich and robust and well supported Again, also ensuring that the system level of commitment is also ensuring that people, wherever they may be on their trajectory towards their own deaths are also continuously and consistently supported through appropriate palliative care and other supports as is appropriate And then finally, a safeguard would be to ensure that there’s appropriate oversight and monitoring as we currently see But for the sharpened in Canada already, but with a sharpened focus around oversight monitoring of advance requests Case specific safeguards, there may be need to be refinements to the criteria that we currently see in the criminal code amendment, perhaps even scoping out appropriate role for substitute decision makers Some countries might have been exploring the use of a registry of all advance requests where there’s a record that can be accessed in the event that it’s not clear what a patient’s wishes might be Clinical process safeguards focusing more on the counseling and the facilitation of discussions associated with the drafting of an advance request, so that they’re informed and an individual has an opportunity to have the questions asked Supporting both the clinician but also the patients and their families And that this should be iterative, not a single moment in time Other support just in general for a continuing support We always need to keep in mind this Whatever Canada might do in terms of end of life policy, they need to support those at the front line of experiencing those patients, their families and the caregivers who are seeking to do their best for them So just a few final thoughts and we’ll open up for a conversation I think Shanaaz will also be sharing some words from the DWD perspective Just as a sort of to summarize some key points Removing the requirement for express consent immediately prior to MAID raises the possibility that a person might receive MAID against their wishes and this was a critical safeguard within our current Criminal Code amendment which is to really focus on competence of the individual making a free and voluntary choice to be able to have MAID administered And so by removing that final consent, we are removing, we are increasing a risk that it might not actually be a voluntary request at that point So the main issue seems to circle around the uncertainty face then by those responsible for following through with the advance request, particularly related to gauging when and whether the patient would desire that Which desire MAID to be administered So timing, disease trajectory, and the circumstances of that request are all relevant factors relevant to addressing this risk that may be flagged So if advance requests were made or permitted, a number of potential safeguards, seeking to minimize that risk might be introduced at different levels and could respond to not only the risk but also vulnerabilities that have surfaced through the deliberations both through this process but also some of the conversations I’m sure you are having with your own loved ones about your own requests or their requests or their interest in an advance request for MAID So I will stop there and just know if you would like to have a hard copy of the reports, if you haven’t looked at one, you can download I believe you can download them off the website, but you can also receive a hard copy and this is how you would be able to do so – Jennifer, thank you so much for such a fascinating presentation and for giving us such a full picture of the considerations that the CCA panel undertook, during this project We appreciate everything that you’ve contributed and for joining us here today So our final speaker today is Shanaaz who will be sharing Dying With Dignity Canada’s reflections on advance requests I will turn it over to you Shanaaz

– Thank you Thank you everyone for joining us this afternoon It’s always remarkable to us the number of people that are engaged in these issues and will come out on a Monday afternoon, to hear these conversations So I just wanted to start with saying that many of you will note that this week, Wednesday will be the fourth anniversary of the Carter Decision And we decided to pick this week, deliberately, to have this discussion because we also wanted to reflect back on how we far we’ve come since 2015 and how much further we have left to go So we had about 1100 people sign up for the webinar It’s probably about half of that on the call right now and I hope that others will be watching the recording of this because I think the information that’s been shared has been so helpful and quite fascinating This is also almost nearly my third anniversary as being the CEO of Dying With Dignity Canada And I can tell you the last two years have gone by incredibly quickly, but with so many fascinating developments on the file, that I wonder when things will For our work and I don’t think we’re anywhere near that happening And another thing I always like to preface in conversations and Tijs mentioned earlier about the various constitutional challenges that are under way That it’s always an important reminder that while Dying With Dignity Canada believes that the current eligibility criteria in Bill C-14 is unconstitutional and too restrictive, for the over 5,000 people today who have access to medical assistance in Canada, the law was good enough for them and we are grateful that people who do qualify for medical assistance and dying are able to be relieved of their intolerable suffering So getting into, and I’ll try to keep my remarks fairly brief I really want to thank Tijs and Jennifer for joining us here this afternoon and for all of the panelists and the CCA for the work that was done in the production of these various reports Our reading of it and I have read the entire advance request report and if you haven’t, I would recommend that you take a look through it It’s really quite helpful in shaping the issues and the various contexts both regionally in Canada looking at advanced care directives and how they work in that patchwork that is, but also looking at the advanced euthanasia directives that are used in places like the Netherlands And these reports give us a lot of information, but they also leave us with a lot of questions Primarily what would work in the Canadian context? What would a model for advance requests and recognizing that there’s more than one type of advance request What would that look like for Canadians? And one of the things that, there were a number of things that I was really pleased to see in these reports and one of them sort of goes back to comparing Canada with the Benelux countries and in particular the Netherlands and looking at the very genesis of how assisted dying came to be and these two different countries And I think it’s a key difference It’s really fundamental and I think should shape the conversation in Canada in a very different direction The legislation in the Netherlands gives clinicians the ability to provide assisted dying under certain circumstances and the ability to do so through the protection of the law It doesn’t enable a right to assisted dying for the person in the Netherlands And for those of you that don’t know, the movement for assisted dying in the Netherlands was led by physicians, who during the 90s in Amsterdam in particular, many of them had a number of patients who are dying in the first wave of the HIV/AIDS crisis And so they have, I think a very human rights related to response to a human rights crisis And they were trying to help their patients, especially at that time, people were dying so badly And so they led the movement, allowing assisted dying in that country That’s not the case in Canada Clinicians were the last people, I think onboard with assisted dying And when we look at the numbers of assessors and providers across the country, we still it still see some large gaps, but many are getting involved and are having those conversations with their patients when they come with questions And so in Canada, our legislation comes from the Carter Decision, which gives us medical assistance in dying is a constitutionally protected right in this country

And I really believe that because the legislation in Canada puts the person first and their needs first, that with these Canadian Council of Academies reports in hand that Canada is well poised to lead the world in the discussions of around advance requests and we can establish a best practice that can draw from the Dutch and the Benelux experience while not being limited by that same experience So the slide that is coming up next really looks at the distinction in language that we like to use when we’re talking about advance requests as opposed to advanced directives And I’ll just sort of walk you through this and just keep in mind that this is, you Dying with dignity Canada’s perspective and some of it’s quite aspirational We don’t actually know what the system for advance request will look like in our country But the reason there are reasons why we prefer to use the language in advance requests One is that, and to allow advance requests and the various types, Jennifer outlined, before diagnosis with a diagnosis and then once eligible for assisted dying, that these would all require a change of amendment to the Federal Criminal Code And so it’s something that would have happen nationally What we see with advanced directives, and Jennifer’s already said this, is that they’re administered differently from province to province to territory and that they’re very different regional standards both in terms of the standing and legality of advanced care directive So those are some primary differences So what we’re looking for is a national standard so that it doesn’t matter if you’re in Newfoundland or if you’re on Vancouver Island, that the eligibility to be able to access some advance request would be the same across the country Another primary difference and it’s one that came up in Jennifer remarks, is related to the focus of these things The most important thing and we teach are chapters across the country are involved with educating people about advanced directives And we often say the most important thing that you can do is focus in on who is going to be your substitute decision maker Who will make those decisions that closely align to your values and your belief systems and what matters to you, what your priorities are? That is the most important thing that you can do to empower yourself So the focus really is on the substitute decision maker, whereas with an advance request, the way that we see it, the focus would be on the person themselves So me, myself, deciding for my future self, the choice that I would want, and in order to be able to access some assisted death, say I have a diagnosis like dementia, which I’m knocking on wood for right now And advanced directives are used for a multitude of healthcare decisions, whereas an advance request for me would only be for medical assistance in dying But they both would require an external person So advanced directives requires a substitute decision maker, health representative, designate whatever it might be called in your province and territory and they would be making decisions for you In the case of advance requests were made What we see is a system that requires yes, a person, whether it’s a health representative, whatever we ended up calling them, someone who says, okay, it looks like the conditions that Mary Smith outlined in her advance requests for MAID to have been met and so they would activate the request, taking it back to the health care team of Mary Smith to see, does she in fact meet the conditions that she laid out And so that’s why we use advance requests as very distinct from advanced care directives So I think it’s probably helpful to be reminded, some of you may not know On our next slide, I’ll be talking now about what our current position is on advance requests and it sounds quite simplistic but I think Jennifer’s context really helps us to understand the complexities We essentially believe that a person with a diagnosis like dementia or some other degenerative neurological condition that will rob them of capacity if they’re dying of that condition, should be able to make an advance request for medical assistance in dying for a future time when they are no longer competent would have met the conditions of intolerable suffering conditions that they have declared in advance And so that would be Mary Smith sitting down and writing down the conditions She has a diagnosis and the reason that we took the position that a diagnosis is required is that it ensures that a competent person is making an informed decision about future healthcare, whereas the sort of the what if scenario, which I know many of you want is a little bit harder to determine

about informed consent process And so Mary has listed all her conditions She doesn’t recognize her family and friends She’s no longer mobile She’s bed bound She can’t feed, clothe, toilet herself Once those conditions are met, then Mary’s person health representative would say, yeah, it looks like she’s met the requirements in her advance request Can we activate it now? And so in this particular scenario that I’m describing, which is as now it’s still very aspirational Once that person has MAID, has had the diagnosis that they complete, then the way we sort of see it working is that they would ensure that their health care team one, they have to be confirmed that they had capacity when they created this document, and that they would confirm on an ongoing basis until they lose capacity that their wish for MAID is indeed endearing And then as I said, with the stuff for the conditions of suffering have been met then the requests can be fulfilled Sounds a lot easier than I think it’s actually going to be in practice But I do want to take you back to 2016 to talk a little bit about how we came to our positions, but also what we found out in that year And so in December of 2015, the Provincial Territorial Expert Advisory Group that Jennifer co-chaired, released their report on at that time physician assisted dying And we were really supportive of what was outlined and so we decided someone needed to pull on this question At that time, we were using language of advanced consent, which has now become an advance requests And so we thought it was a pretty risky thing to do because we’ve never pulled on it And while we believed that many Canadians would support this, because it’s the most important reason why people join our organization, it’s still sort of risky when you’re not really sure what you’re going to find out And I remember at the time thinking, oh, well, if we have 65% of people supporting advance requests with a diagnosis, that’s still a pretty respectable majority And we were quite surprised in a really good way because it confirmed what we already knew, that it was much higher and that it turned to be 80% of Canadians agreed that they should be able to have the option to make an advance request Should you have a diagnosis like dementia Interestingly, we also pulled on without a diagnosis We were curious to see, and it’s still a large majority 70% of Canadians at that time said, yeah, if even without a diagnosis, you should still be able to lay down your wishes for medical assistance in dying in the future And the other category that we pulled on, only we didn’t know a call it what we’re calling it now, it was on the category of people who’ve already been assessed and approved and have already been found eligible for medical assistance in dying but might be at risk of losing capacity We did ask the question and at that time it was 82% I’ll come back to that in a moment when I speak about one of the asks we’re making of the Canadian public in the coming days and weeks ahead And so basically what we came to was that we knew that Canadians really wanted the option of advance requests and we thought on the other exclusionary groups around mature minors and mental illnesses and sole underlying condition, that maybe they needed to give it more time to sort of understand the legal, the moral, the medical implications around those exclusionary groups But we did suggest I remember my testimony in May of 2016, that, look, if you’re not ready now to the federal government, put it in the legislation that you’re going to study the issues and you’re going to come back in two years with recommendations We didn’t get everything we wanted, but I do have to say that just even outlining the safeguards in the advance request panel report I think is incredibly helpful for understanding what are our next steps would be And you know, what we understand around the issue of advance requests is what the Supreme Court of Canada, when they were deciding, Carter Decision, grappled with the notion of the cruel choice And it’s the same cruel choice that without the option for assisted dying in advance, a person who tried to take their own lives far too early when they may have weeks, months, or even years of good quality lifestyle left, or they’re left to die in a way that they would find horrific A really good example of this cruel choice was a BC woman, Jillian Bennet in August of 2014, she had a diagnosis for early onset dementia and she opted to take her own life while she still could

She wrote a blog, it’s still up for those of you that haven’t heard of it yet It’s called Dead at Noon I encourage you to take a look at it because that was the dilemma that she found herself in and that others will So what we’re looking for is an advance request regime for me that reflects the spirit of the Carter Decision For instance, intolerable suffering is subjected to the person Only a person can decide how intolerable their suffering is and that we’re looking for the Canadian government and the legislation that comes But it will be about inclusivity and it’ll be about upholding rights Not excluding people because we’re a little bit uncomfortable with some of these categories of people and I think that there’s a lot of complexity and I really appreciate Jennifer’s insights on the nuances with people with dementia It’s so varied and so unique to the person and there is a lot to consider, but at the same time, we really have to balance how we understand stigma of very vulnerable and a marginal group of tens of thousands, hundreds of thousands of Canadians who have dementia while not re stigmatizing them by saying that they can’t have access to the same end of life rights as other people who don’t have the same diagnosis So when we talk about next steps, we’re really looking to start from a place of inclusion for advance requests and the other exclusionary groups And the reports calls for public consultations and we think that that’s an extremely good place to start As some of you will know this and some of you may have participated in this, but we were very concerned about making sure that the Canadian Council of Academies heard from Canadians as part of our submissions And so 746 of you shared your stories and your perspectives and we included them in our very massive submission to the CCA and just really appreciate that it was referenced in the advance request report that there were ways that average Canadians voices were heard and reflected in these reports And we think that there also needs to be ongoing expert consultation to understand how we can move from sort of abstract and conceptual to the operationalization of the inclusion of advance requests And mature minors and mental illness as a sole underlying condition The last thing I’m going to leave you with, and for those of you on this webinar, you will receive this this afternoon and it’s an immediate call to action And it’s reflected in the advance requests report Though, if I characterize it incorrectly, Jennifer, please correct me But in the vignettes that she referred to in the reports and the various scenarios A woman out of Halifax, Audrey Parker, really represents this particular scenario And Audrey Parker, you will probably most of you will know it was a woman from Halifax who had terminal breast cancer that had spread into her bones and then into her brain She was most certainly dying and there was a strong possibility that if she died a natural death she would lose capacity And Audrey started speaking publicly in September I remember I was in South Africa at the time and I was thinking, oh, I really have to talk to this woman when I get back to Canada And her story came out, I think after the drafts of these reports were completed And in the first conversation I had with Audrey in October when I came back, she was a really incredibly spirited woman, and really very brave speaking out in the weeks before she was going to have an assisted death and she chose to have an assisted death on November 1st She really just wanted to live for one more Christmas but she was so worried about losing capacity that she decided that she couldn’t risk it She was going to die on November 1st And so at first conversation, she kept referring to her situation as people in my category People who are in my category, it’s just not right, it’s just not fair that we have to choose to die too early And in my head at the time, I kept thinking her category, her category, what’s her category and then of course it hit me Her category was assessed and approved She was somebody that was already eligible for an assisted death and she’s like, yes, that’s exactly right And I said, and you should be allowed to go ahead You’ve already been approved It’s just a question of the possibility of losing capacity

That’s exactly right And I remember teasing her in the week before she died, that she was assessed, approved, and she was adamant that she wanted to be able to have an assisted death but it was wrong that you have to choose to die too early So we believe that this category, the assessed and approved category, this is something that the government can do now That there are many other Audreys that every month that goes by, I talk to clinicians all the time There are people in this situation, they’re already eligible for an assisted death and when we look at the scenarios outlined in the CCA reports, the likelihood of somebody like Audrey changing their mind is very slim They just will become comatose Unable to speak or articulate They might even slip into a coma And so we believe that this was an unintended tragic irony in the law, that it wasn’t intended And that medical assistance in dying should be life affirming, that people should be able to live as long as they can, the best quality of life that they can, until they can’t anymore But being put in a situation like she was where she was literally forced to end her life too early for fear of losing the right to have an assisted death, it’s not just It is a severe and grave violation of someone’s section seven rights and the charter to life, liberty and security of the person And while we knew this category existed before Audrey Parker, Audrey Parker really helped us to understand that this isn’t a potential charter impact That this is a real severe and grave violation And so we are launching a campaign to our supporters today and then nationally on Wednesday, February the sixth, the fourth anniversary of the Carter Decision asking the federal government to move ahead and legislate on the assessed and approved category It will impact probably hundreds of people So it’s not going to help thousands and thousands, but probably hundreds But for those people, their families and their friends, for anyone that’s gone through the dying process with anyone and certainly for people who’ve gone through the dying process, when their loved one has chosen assisted dying, every moment is precious And time, time is the most precious thing that we all have And so please take that action and hopefully more to come in the weeks and the months ahead and I will stop there And I think Kelsey, you’ve got some, and Maureen, you may have some questions – Yes, definitely Thank you Shanaaz for sharing more about Dying With Dignity Canada’s views and the next steps that are coming our way So yes, we do have plenty of questions to go over in the next 15 minutes or so So I’ll ask all of our presenters today to turn on their webcams again so we can see you and we’ll get the question period started So the first one, I think that’s when we’ll something for Tijs and Jennifer to address and Shanaaz you mentioned that, with Dying With Dignity Canada’s submission, we included the almost 750 letters from our supporters So we’re wondering what impact, if any, did those stories have? Were the panelists able to read them and how did that play out as the panel move through this process? – Oh Tijs, are you gonna? – No, go ahead – So as Shanaaz pointed out, I mean we did reference in the report that in a number of places where the submissions for Dying With Dignity was actually informative of our thinking I can speak to, I would say that one of the key contributions of those submissions was that it gave us a much better insight into the reasons why people may be seeking an advance request that goes beyond purely the theoretical It was in the voices of those who might have an interest in it They put it into words for us And so that was extremely helpful, to move beyond as Shanaaz had pointed out, move beyond the theory into actually the lives of people who may be affected And so we had access to all of those submissions The panel, the working group and the panelists had access to all those submissions Those submissions though, are not publicly available Those were just for our own work and I think Tijs can actually comment a little bit more about that So the public, the public dimension versus the panel dimension The panelists had access, but it is not so that the total submission is not publicly available Tijs might you just comment on what the distinction I’m drawing – Yeah, that’s correct I think is Dying With Dignity,

when you submitted your call for input forms, you requested that the testimonies and the letters be for the panel only and not for the public And we have now posted all of the call for input submissions that we’ve received They’re available for downloading on our website, including a Dying With Dignity submission, but not the letters that we received as part as this Dying With Dignity – Great, thank you I just wanted to chime that I remember when we were trying to figure out how do we share the voice of Canadians without pissing off the people, the CCA We were even thinking about just asking people to randomly like email your general inbox but we went back and looked at the criteria for our submission and we realized that we could include, other perspectives as the overall package and just really appreciate, that you did keep many of those stories were traumatic, which is why we asked for them to be held privately But really appreciate it that they were read and they were referenced – Right, right – Thanks everyone And I am getting some questions that are coming through from our supporters that are quite personal in nature and we’re happy to follow up with you privately We want to support you as best we can, but we will follow up with you individually to go over some of those more private concerns We do have navigation support both in terms of looking at your healthcare options as well as emotional support So that information is up on the slide there as well So the next question is about the challenges faced This whole project seem like quite the undertaking and a lot of, people were involved in a lot of moving parts So one of our supporters is wondering what the primary challenges were, when you were working through the three reports and especially the advance request report – I can certainly speak from the advance request perspective I kicked off some of my opening comments was really talking about the diversity of views that were sitting around the table So they were very highly skilled, very thoughtful people around the room coming with a range of different experience in different views, which was that matches and mirrors, the diversity within Canadian perspectives as well So that in itself was how do you reconcile some of those views and then together, reconcile that with the available evidence that we have before us So that just as a task, to try to synthesize and make sense of what we’re hearing in a way that it was balanced and was true to what we were hearing was a challenge but it was also what made this really rewarding because I think we actually did a pretty nice job of finding that balance And so one of the bits of work that we had to do as working group members was agree to the final content of the reports And there you will see, at least in our report, there were a couple of places where we did point out where there was some disagreement amongst panel members and I’ll use the example of the degree of effectiveness of safeguards and how important it was to be able to reflect that concern that proposed safeguards Not all saved cards are going assume going to be a effect and we that’s an empirical question we don’t know the answer to So being able to find that appropriate balance in terms of reporting on the diversity within the panel, also also recognizing that we were seeking to reach agreement on what the content was, even if that meant that there were some diversity in views And Tijs I mean each of the working groups had their own experiences with this because each topic is a little novel in terms of its focus – Yeah, by design all panels were built to have that diversity, to make sure that we had not just disciplinary views, different multi disciplinary perspectives, but diversity of views on the topic itself And that made it challenging for all three groups and especially because they have to come to an agreement on the contents of the report – If I could add one area of challenge and Tijs you mentioned it right at the beginning was almost almost everybody is used to getting recommendations So the biggest challenge was not to do so and to really try to listen then across the table with each other to build an understanding of each other’s views, in order to sort of take advantage of the richness within the room Because I think so many of us who work in the field of health, we want to rent to action We want to act, we want to do And so this was really forcing us to take a pause to really listen deeply to what each other was saying and to also listen to deeply to what we’re hearing from the call for input and then look critically at the evidence before us And so it’s amazing what happens after six intensive sessions how close we got to have a deeper understanding,

all of us about the issues at this time – Thank you both So given that the CCA reports have now been tabled, what do you think the next steps could look like? Do you think the government has enough to work with to make some changes, to reflect what’s in those reports? – Well, let me start on that So these reports essentially reflect the state of what we know as of around August, 2018 and at this point in time, there won’t be any revisions made to these reports The CCAS role at this point is really to encourage the dissemination of the reports and mobilize the findings knowledge, of these reports and to that end, CCA has kept wearing technical briefings on this to interested organizations which we’ll be doing over the next couple of months – I guess what I would add to that, and it’s partly reflected in the letter covering all of the reports from the chairs, which was what we were hoping was that this would foster continuing conversation in Canada about how we die in all of its dimensions and all of its respects And so that really calls on not just parliament to do what it will will with the reports but also it’s an opportunity for academics like me for example, to say, okay So what’s the research that we need to be doing? What are the questions we need to be asking? What is our responsibility to feed into this? And then to civil society groups like yours and others that is really, so what can we do with this report that helps enrich and then foster our own work again with this broader goal and Shanaaz, you mentioned this It’s a broader goal, which is about how we die in Canada, which is inclusive of the full spectrum of support, a range of supports that we may have available to us So, what should happen from this is really going to be, we can’t speak for government We can’t speak for the CCA in terms of what it should do now It’s fulfilled its mandate But I know speaking for myself as a researcher, as a public ethicist in the world, it becomes more important that it’s sort of galvanize where I think I need to be focusing some of my energy to ensure that we’re filling some of those gaps and continuing the conversations that we need to be having – I’ll just chime in here really briefly and sort of really echo back what Jennifer and Tijs have just said, that this is a jumping off point, I think It’s also a moment though to ask various people or politicians, people in the medical community, people who work in social workers and regulators to really step up to the challenge and show some courage and real compassion here Our primary concern when we look at these, the number of people that are excluded from the legislation is that it’s discriminatory It discriminates against groups of people that do have very real vulnerabilities and concerns So how do we find that balance? And I think that these reports give us what’s knowable as of August, 2018 and now there’s next steps and next questions to be sure The unfortunate thing will be if there are enough people that step up to the challenge, in particular the politicians But I think on a number of these issues that these reports will be in fact used as evidence in court cases where we’re relying on really vulnerable suffering and grieving people in their families to go to court And we’d like to avoid that and so we really encourage the government to use the reports and do the next right thing – Thanks to everyone So this question is for Tijs Does the CCA effort to assessments that include recommendations or consultations with the general public? – The short answer is no All of our assessments to date have been without recommendations and for that matter, without any public consultation, and that’s really the spirit of what we do We put together panels to pull together the relevant knowledge about the specific topic And it’s really the role of government then to take that and decide what to do with it and make recommendations for themselves based on not just the evidence but other factors that they may be dealing with And to that end, it’s generally considered to be, our reports tend to have more impact by not having recommendations in them – Great, thanks So a number of you are asking for links to the reports So we will send that out in this follow up email

that goes out in a few days So don’t worry We will provide that so you can read through everything yourselves We do have a question too, and a few people have asked for some clarity about this So, it’s related to mental illness But a number of people are wondering if a person has mental illness, but also they also have another condition, cancer perhaps that’s ending their life, would they qualify under the current laws? So Shanaaz I don’t know if you want to take that one – I’ll take a first stab, but I’m sure Jennifer will have some extra context Having mental illness doesn’t automatically exclude you from accessing medical assistance in dying Many people have mental illnesses and still have capacity to make their own healthcare decisions and so long as people meet the current eligibility criteria, then yes, you could have a mental illness and still be able to access medical assistance in dying – That’s my understanding as well Shanaaz so I won’t add anything more to that – Great, all right And how is the CCA funded? It’s another one that just came in – Yes, so we have a funding agreement with the Federal Department to Innovation Science Economics Canada, ISEC and with this funding, we carry out a set number of assessments every year, but this assessment was funded outside that agreement, and through a contribution agreement with Health Canada – Okay, great Someone else’s wondering if we could get a bit more clarity on how the three groups were chosen People needing advance request, mental illness and a mature minors and if you predict that in the future the CCA might be a delving into other issues related to medical assistance in dying – Well, let me take a start on that These topics really came out of parliament in their deliberations in the lead up to Bill C-14 And in fact these three topic areas were not settled at the time of the drafting of the legislation and hence the provision that they be reviewed further by three independent reviews As far as we know, there are no other topics related to MAID yet to be followed up with a review except for the fact that the legislation itself will be subject to a full review at the five year mark – Great All right, so we’re almost at time I’m going to turn over to Shanaaz has a few final words before we go and then we’ll close it Shanaaz? – Thank you so much Kelsey I just wanted to let people know that we are going to be requesting panel representatives from the panel that looked at mature minors and medical assistance in dying and another one that looked at the issue of mental illness as an underlying criteria So Tijs, you’ll be hearing from us ’cause I think that many of our supporters are very interested in hearing from panelists who grappled with those issues So stay tuned for that And lastly, I just want to say how honored and humbled we are to have you both, Tijs and Jennifer joining us and our supporters this afternoon This was such a critical piece of work So it’s going to be fundamental, I think not to just advancing conversations and discussions, but actually advancing change, and time ahead So thank you both for joining us Thank you for your work and I’m sure that we’ll all continue to stay in touch Thanks – Thank you so much Shanaaz – Yeah, thanks for the opportunity – Thanks so much everyone, and to our supporters on the call today, we’re so grateful to have you It’s like I said, our first webinar of the year, but there are plenty more to come Do fill out the survey that we’ll be sending out in a few days We’d love to hear your feedback on today’s webinar and your suggestions for future webinars And thank you to Shanaaz, thank you Tijs and Jennifer for joining us It’s been really great and we’re getting a lot of wonderful comments coming in about how valuable your presentations were to our supporters So thank you so much