 My name is Jocelyn Downey, and I'm a professor here in the Schulich School of Law. And I want to first of all thank you all for coming out. It's nothing like death to bring out a crowd. I'm actually really grateful for the opportunity to talk with you tonight about medical assistance and dying. And I'm going to call it made for the rest of tonight. Two quick caveats for you. I won't be talking about the specifics of Quebec. It's a little different than the rest. Happy to go into it in the discussion period if you have any questions, but I won't be covering it specifically in my remarks. And the second is I have to say this is up to date as of January 23rd, 2019. Could be different tomorrow. Things just keep happening in the field of made. So this is my best effort to get together everything we know about what's going on as of today. So let's talk about made in Canada, where we are and where we may go from here in the future. So first off, where are we? Well, we're in the company of a growing number of countries and states in which made is legal. It's worth pausing for just a moment to contemplate how momentous that statement is. Made is legal in Canada. Okay, now with that we're going to drill down into what that actually means in Canada. Specifically, what are the nuts and bolts of the Canadian made legislation? And what I'm going to call that C-14 from now on, because that's the name as it was introduced in the federal promise. We sort of came to know it as that, and it's shorter than the whole name of the legislation. So that's what C-14 is. It's our federal legislation. So first of course we have to ask what is made. So it is two things in Canada. It is the administering by a medical practitioner or nurse practitioner of a substance to a person at their request that causes their death. In the past we would have called that euthanasia. It is also the prescribing or providing by a medical practitioner or nurse practitioner of a substance to a person at their request that they may self-administer, and in so doing cause their death. We used to call that assisted suicide, and in some places it's still called that. But in Canada, we talk about both these things, this is what made is. Who can access made? There's a set of eligibility criteria in the legislation. You have to be eligible for health services funded by the government in Canada, a government in Canada, or you would be bought for the minimum period. Sometimes it's three months, sometimes it's six months. Bottom line there is we won't have what's known as made tourism. People can't just pick up and come to Canada to get made. You have to be at least 18 years old, capable of making decisions with respect to their health, have made a voluntary request, and have given informed consent to receive made after having been informed of the means of alleviating their suffering, including palliative care. And that language is right in the legislation. Also you have to have what's called a grievous and irremediable medical condition. And this phrase is then defined in the legislation as follows. You have to have a serious and incurable illness, disease, or disability, be in an advanced state of irreversible decline and capability. The illness, disease, or disability or that state of decline has to cause enduring physical or psychological suffering that is intolerable to the person and cannot be relieved by any means that they consider to be acceptable, subjective. And as the kicker, their natural death has become reasonably foreseeable. Taking into account all of their medical circumstances without a prognosis necessarily having been made as to the specific length of time that they have remaining. There are also some procedural safeguards. So for example, two providers have to confirm that all of those eligibility criteria have been met. Ten clear days have to elapse between the day the request is signed and the day made is provided. And there's an exception there which is if loss of capacity or death is imminent, you can shorten that 10-day waiting period. And you have to have reconformation of consent immediately before the provision of made. Now it's worth noting here before we leave this overview of the legislation a few things. So both practitioner and self-administer. Medical and nurse practitioners. So physicians and nurse practitioners can provide made. You do not have to be terminally ill. You do not have to be at the end of life. The intolerability of suffering is subjective. It's up to the person who is experiencing the suffering and we have no requirement of prior judicial review. You don't need to go to court and get in order to say, yes, that's okay, you can proceed with made. So some of these things are what set us apart a bit from other jurisdictions that don't have all of these variables. So turning from the nuts and bolts of where we are, let's look at where we are by the numbers. We know made can happen under the legislation. The question is then, is it happening? The easy answer is yes, indeed it is. So by the latest data, official data, in December 10, 2015 and December 31, 2017, there were 3,714 cases of made. And we know that that means many, many, many more people were helped, they were comforted because they knew made would be available even if they didn't ultimately choose to access it. So let's drill down a little bit more on these numbers. You can have provider or self-administration, as I said before, but notice it's almost entirely physician. Physician, nurse practitioner, I've blurred those two. So it's almost entirely clinician for administer, not self-administer. And we can go into the reasons for that. You also can have a doctor or nurse practitioner, but again we see that it's almost entirely physicians and again we can go into the reasons for that. It's about evenly split between home and hospital as far as where it happens. There's a smattering of other places on the books. It's happening more in larger than centers, but not by a huge margin than in the smallest centers. It's significant, but not I'd say massive. The average age of the person accessing made is 73. And the split between men and women is almost equal at the moment, 51%, 49%. The most common underlying medical conditions, cancer related by FAR, 64% are cancer related. And you also have circulatory respiratory system issues. You'll have neurodegenerative conditions and then you have the mysterious other, which hopefully as we get better data, that number will drop because we'll actually know what they are. So that's who's getting made. What about those who request made but don't get it? 18.4% died before completion of the assessment process. And that's a significant number. The most frequent reasons for being found to be ineligible are loss of competency. Death is not reasonably foreseeable. A quick note on Nova Scotia data. There have been in the last window that they reported on, which is January 1 to June 30, 2018, 94 referrals to the maid service. 40% of those were completed. So 60% of people who didn't complete the procedure, either withdrew their request, lost the capacity, or died before receiving made. Or they were in the process while this report was generated. The average age of those who did receive made was 70, slightly more male than female. And again, cancer is the most commonly reported diagnosis, followed by neurodegenerative cardiovascular and respiratory. So a few reflections on the numbers. There really aren't any surprises in the demographics, age, gender, that kind of thing. There are no indications of people getting access who aren't eligible. There are some indications of barriers to access, I would say. I have a concern about timely access to assessments and provision. Concerned about self-administration, point 01, something like that. Concerned about the low numbers of nurse practitioners, in part because that's actually an access issue, particularly in under-service communities. And a concern about the low numbers that we're seeing in hospice, those are reflected in the data. They're hinted at in the data, I would say. We will, we should have better data coming because we now have a federal oversight system. It came into effect November 1, and hopefully we'll have a much better sense of what's going on in the future. So that's where we are. Now the harder part. Where do we go from here? And there are five issues that I want to talk about before we get into the discussion. Charter challenges, some confusion about the meaning of the legislation. Religion and conscience issues. There's some outstanding federal issues, and I would say some outstanding provincial issues in Nova Scotia. So first the charter challenges. There are two cases to talk about here. First they have to take you on a bit of a trip down memory lane because understanding what came before is essential to understanding what's going to come next with respect to the charter challenges. So I have to take you back to the Carter case. Kay Carter was 89 years old. She had spinal stenosis. She was in incredible pain and severely debilitated. Her family took her to Switzerland for an assisted suicide, and when they came back, they launched what became known as the Carter case. They challenged the criminal code prohibition on maid. They said it violated the charter. And then Gloria Taylor, who you see on the other side of the slide, joined the case. She was a woman with ALS, a neurodegenerative condition. She was also arguing that the prohibition that we had in the criminal code on maid violated her charter rate. So we had the trial started in 2011, and the decision came out in June 2012. And Justice Lynn Smith, who you see here, found that the charter was violated by the criminal code prohibitions on maid. The case then worked its way up through the Court of Appeal to the Supreme Court of Canada, and the unanimous court, nine-nothing, with the decision signed by the Court, which is what they do when they want to send a really, really strong message that they are really, really unanimous. They agreed. And they found that the criminal code prohibitions were void. Insofar as they prohibit physician assisted death for a competent adult person who clearly consents to the termination of life, has a grievous and irremediable medical condition, including an illness, disease, or disability that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition. An irremediable they added in the decision does not require the patient to undertake treatments that are not acceptable to the individual. So the Supreme Court of Canada had spoken. They gave a year to the then conservative government to put in place legislation if they wanted to before the voiding of legislation would actually take effect. The conservative government dragged its feet. Then there was an election and they lost the election. Then the liberal government came in. They inherited the deadline of February in the fall. They asked for an extension. They asked for a long extension. They got a short one. So in the end they had until June to deal with the situation. So Bill C-14 was introduced in April. And there was an absolute firestorm in Parliament, in part because it did not closely enough to map on to the current decision. That was the heart of the criticism of Parliament. So an act to amend the criminal code to make related amendments to other acts made legislation comes into force in June. Key to note is that the C-14 eligibility saying it has to be incurable, you have to be in advanced state of decline of capability and your natural death has to have become reasonably foreseeable nowhere to be found in Carter. So 10 days later, if you're watching the pictures, the legal team from Carter launched an action. They launched a charter challenge to the new legislation in the name of Julia Lam, who's a young woman who suffers from a degenerative neurological condition. Some months later Jean-Pierre Reynaud on the other side launched Truchon Gladieu Challenge in Quebec. You'll have seen that in the news very recently. Just because of rules of courts, it's in court well before actually Lam will get to court even though Lam was actually initiated long before Truchon Gladieu. But effectively both are saying that the circle of who may have access under C-14 is smaller than the circle of those who must have access under the charter. So the plaintiff's legal team is arguing C-14 violates section 7, which is the right to life, liberty and security of the person because people will end their lives sooner than they otherwise would because of this. They'll commit suicide while they still can't. That it's liberty, security of the person is violated because a very profound personal decision is being taken away from people. That there's a violation of section 15, equality provisions because persons with disability are discriminated against and the perpetuation of prejudice or stereotyping has largely to do with the notion that people with disabilities somehow have less capacity for decision making than people without disabilities because that's the effect of C-14. Also arguing that it doesn't minimally impair which is the test, minimally impair those 7 and 15 rights. The argument being that you could achieve the same goals for the legislation. I'm just hearing an echo. Is there anything we can do? No. There is a volume button on here so let me just try to... It would be better to not be... I don't know, so we're here. Does that change it? Reduces my volume, but can people still hear? Okay, let's go with that. So it doesn't minimally impair the rights because you could actually achieve the legitimate goals of legislation without restricting access to people like Julia Lam, Nicole Gladue and Jean Truchon. People basically with disabilities that are not going to get them close enough to death either temporarily or in terms of the predictability of their cause of death to qualify under the recently foreseeable provision basically. The government response has been to say and this is the now former minister of justice, very recently former minister of justice, Jody Wilson-Raybould. She said we're confident in the legislation that we brought forward that it finds the right balance in terms of being able to access medical assistance and dying, protecting the autonomy of individuals to make the appropriate decisions for themselves as well as protecting vulnerable individuals. They go on to say, and they're arguing in court, that what they've done is achieved the right balance between protecting autonomy and preventing suffering and on the other side, preventing errors in abuse in the provision of may to affirm the inherent and equal value of every person's life and to avoid encouraging negative perceptions of the quality of life of persons who are elderly, ill or disabled to protect vulnerable persons from being induced in moments of weakness to end their lives and because they say suicide is a significant public health issue that can have lasting and harmful effects on individuals, families and communities. So they argue that that is the right balance. The bottom line here is that competent individuals who are experiencing enduring and tolerable and irremediable suffering as a result of a grievous and irremediable medical condition are prevented by C-14 from accessing maid basically if they have disability or degenerative condition with years until death or without a predictable cause of death. The path is not clear. And as we said, they're not too old because we pointed out when they brought out the legislation that Kate Carter wouldn't have qualified because her death was not, she wasn't, she could have lived for 16 years and there wasn't a predictable cause of death and the minister said, oh, but she was really old. Suddenly, I have to think of criteria. That's troubling. Anyway, tangent, back from the tangent. So their choices are people who are in that circumstance, the circumstance of Julia Lam and Nicole Gledieu and Jean-Claude Chuchot. Their choices are you continue to live with suffering or for instance, you refuse turning. If you refuse turning, you will get bed sores. They will get infected. You refuse antibiotics for that and you will die. Or they refuse food and liquids and die of starvation or dehydration. Or if they have the resources in our mobile or not, they go to Switzerland for assisted suicide. The question is, does this violate the Charter? Where do we go from here with that question? Well, we have the Charter challenges and the court may strike down the narrow definition that the legislation gives us for greatest and irremediable medical condition. Maybe Parliament will amend the legislation to fix it. Maybe there will be a reference to the Court of Appeal, the Supreme Court of Canada. That is where somebody, like the government, says to a court, please give us an answer on whether this is constitutional or not and doesn't put the burden of litigating that question on people like Nicole Gledieu and Jean-Claude Chuchot. And actually just this week, the Quebec professional regulators, seven of them, the physicians, the nurses, the pharmacists, the social workers, the lawyers and the notaries, they all sent a message to the government of Quebec and said, please send a reference to the Court of Appeal to test the constitutionality of this. Now we also, we have a new minister of justice, federal late new attorney general and minister of justice. Just came in and I would note here that at the time of C-14 going through Parliament, he actually voted against rejecting the amendments that would have taken out the narrow definition because he said this law as drafted, as the government wanted it, is at serious risk of being found to be unconstitutional. Interesting place to be, minister of justice now, being asked to take reference on something that he thinks serious risk of being found unconstitutional, awkward spot to be in. But it opens up the possibility that maybe a reference will go. Who knows? Stay tuned. Come back next year and we'll tell you. Okay, so on to the second issue, the confusion about C-14. So we have to ask, there's confusion about what some of the words and phrases in the legislation actually mean, and there's some confusion about what's actually legal under the legislation. So there's a set of words and phrases in the legislation that when I was reading them out, may have had you scratching your head. And indeed, when I first read the legislation and many others read it, they scratch our heads because what does that mean? Natural death has become reasonably foreseeable. Does that mean, I mean, all of our hate to break to you? All of it, reasonably foreseeable. But it can't mean that, right? So what does it mean? And so people initially thought it meant, okay, you have to be a certain proximity to death, but it can't mean that. Actually, if you get in and do the statutory interpretation, I don't think it can mean that. It may mean a predictable path to death. So for instance, the Minister of Health actually said at the time, on diagnosis with ALS, somebody would meet that criteria. It would meet all the criteria, because it wouldn't be advanced enough, but they meet reasonably foreseeable. So the question is, what does it mean? Does it mean temporal proximity close enough, or is that just sufficient? So if you're close enough, that's okay, but also, but you don't have to be close enough, if you're on a predictable course to death, that's also okay. We don't know. Incurable, does that mean by any means or only by means acceptable to the patient? Irreversible decline in capability. Does that mean physical capability only or also mental capability? Imminent loss of capacity to provide informed consent. Remember, that's the exception to the 10-day waiting period. Does that mean naturally imminent or could it be imminent due to the provision of medication necessary to control suffering? So these are uncertain. I have opinions about what all these things mean, but that's not, you know, a lot of comfort for a doctor or nurse practitioner who's thinking, yeah, but if you're wrong, I'm going to jail. So we have a serious problem. Criminal liabilities at stake. Law needs to be clear. There's also confusion about what's actually legal. Here are some examples. V said as a path to may. So voluntary stopping eating and drinking as a path to may. So say I'm told that I don't qualify because I have a disability, but my natural death is not recently foreseeable. So I'm like a nuclear true show or a nuclear like your usual true show. Can I say, okay, I'm stopping eating and drinking. Now my natural death has become reasonably foreseeable. So now I qualify for may. We don't know. Rescue provider administration after failed self-administration. Okay, so if I decide I want to go down the path of self-administration instead of having needles and an injection from a physician, if the physician's there and it doesn't work, so I don't die, but I'm comatose, can they give me an injection? Which they could have done if they'd done it at the beginning, right? If I hadn't self-administered. I could have just consented to it. Now I'm not competent. So immediately prior to the provision of the injection, I'm not competent. So is that a violation of the criminal law? There's some suggestion from the government that that's actually a violation of the criminal law. There is a strong pushback from the providers that that's abandonment. And they can't force providers to sit there while this just goes completely sideways. Question about physician nurse practitioner raising the issue of maid with a patient versus responding to questions and requests. Some people have suggested that, yeah, for sure you answer all questions, but what if somebody doesn't ask you about it? Can you must you raise the issue? Some people say, oh, that might be aiding and abetting suicide. I would argue you have a duty to inform. If it is an option for the person, you have a duty to inform. But again, it's an open question. So the path ahead here is also uncertain. The courts may interpret the legislation, as they did in a case called AB in Ontario, where they interpreted reasonably foreseeable and said it is not temporal proximity. It's not how close you are to that. It's about that and predictable pathway. So they opened it up for Ontario. We may see criminal charges. Maybe somebody gets it wrong and they get charged. Well, they got it right, but they still get charged. And then we get that figured out. We may see regulatory colleges. So here kudos to the College of Physicians and Surgeons of Nova Scotia, who put into their maid standard an interpretation of reasonably foreseeable, which has made it very clear it's not terminal illness. It's not one year. It's about a predictable path to death or time. Or we may have the other side, which is there are multiple complaints in BC about providers that they breached the law. One of them, for instance, was about a visa as a path to maid. And they found so a complaint was made about a doctor who gave maid after a person had not qualified but then stopped eating and drinking and the complaint was made. The college said, no, that's not professionalism. So we start to get some hints about what the answers to these questions are. Much better possibilities for my perspective are that we get amendments to the federal legislation, put definitions in the act. Makes it very clear for everybody. Or we get federal or prosecutorial charging guidelines. So you could have the prosecution service here in Nova Scotia, which is independent, say we will not be prosecuting. We don't see it as being in the public interest to prosecute in certain circumstances. This is what these words mean to us. This is how we interpret the criminal law. And that could give some comfort and guidance to people. We can see a federal glossary. They produced one when they introduced the legislation. So there's really no good reason for them not producing one now, but they backed it off their website. So again, stay tuned. Watch this space. Come back next year. Okay, issue three, religion and conscience. And this deals with both providers and institutions. So the providers first. These are doctors and nurse practitioners who have a religious or conscientious objection to participating in the maid. It's important to note that the Supreme Court in Canada did touch on Carter, but did conscience in Carter, but didn't give us good answers because basically they said we do not wish to preempt the legislative and regulatory response. So we underlined that the Charter Rights of Patients and Physicians will need to be reconciled. So it's not answered in the decision despite what you might hear from some sources. C-14 as well did not answer this question. It said nothing in the act affects the Charter Guarantee of Freedom with Conscience and Religion. Nothing in the act compels an individual to provide or assist in providing. Nothing stops people from providing. It doesn't address it. So that takes us to a case where you have a duty of effective referral. And that is the Christian Medical and Dental Society of Canada and College of Physicians and Surgeons of Ontario. The appeal was heard just earlier this week, as I said. So what happened is the College in Ontario, the College of Physicians and Surgeons in Ontario, put in their maid policy that doctors have a duty of effective referral. If you object on you don't have to provide, you don't have to assess, but you have a duty of effective referral. Doctors and dentists took them to court and said that this policy violated their Charter Rights. They're section 2A, Freedom of Conscience, Freedom of Religion, Rights. And the court found in a very, very strongly worded decision, I encourage you to have a look at it, that yes, the policy limits freedom of religion. No, it doesn't discriminate. It's not a violation of equality because it doesn't arise from any demeaning stereotype, rather from a neutral and rationally defensible policy course. And they said that the breach of section 2A is justified because they said the goal of ensuring access to healthcare in particular equitable access to healthcare is pressing and substantial. And that the requirements impair the individual applicant's rights of religious freedom as little as reasonable as possible as a test in order to achieve the goal. They went on to say alternatives proposed by the applicants, so that doctors and dentists would compromise the goal of ensuring access to healthcare in many situations, often involving vulnerable members of society. Important to see here that they're seeing people who want access to maid as vulnerable. It's often people who, when the government's talking about vulnerable people, that's not who they're talking about. That's what they're recognizing here. And they said the requirements of the college were proportionate in terms of the effects. The positive effects associated with the effective referral requirements of the policies were significant. The impact on the individual applicants, while not trivial, does not extend to deprivation of the ability to practice medicine on Ontario, although it may require an accommodation on their part. So we wait for the decision from the Court of Appeal. You might be wondering what's going on in other provinces and territories. There's a range of positions that have been taken by regulatory bodies. One, the effective transfer of care rather than referral transfer of care. One, take care of the care of the medical treatment and the other, no viscose standard. Others you will find say you have reasonable access to the maid care coordination service without the way, or timely access to a non-objecting physician or resource, timely access to a resource only that will provide accurate information about the medical treatment or procedure. The worst, in my opinion, is an information package. There you go. Which includes a phone number. Court of Appeal, maybe it will go up to Supreme Court of Canada. I think also that we can see the development of strategies for reducing involvement while ensuring access. So you have a system, you've got your computer in front of you, you're the family doc, you object the person asks for it, you hit a certain code and it goes, it's an automatic, goes over to a colleague who's down the hall and they pick it up. It's a very, very minimal engagement in a process. We also see, I hope, more robust self-referral programs so that individuals who at least know about it can call and say, I don't want to talk to my doctor about it or my doctor is not willing to talk to me or object or whatever. They can call and they can just get into the system that way. Also the flip of it is that maybe we'll see the enforcement of some college standards. So when the college says you have a duty of effective referral and we find out that people are not doing it, that the college would actually stand up for the standard and enforce it. We have not seen that with abortion, which is a related issue around conscientious objection. So I don't know whether colleges will do this, but that is an option. So again, watch this space. Okay, moving from providers to institutions, specifically here I'm talking about publicly funded faith-based institutions. Okay, we've seen a number of cases. You'll have seen them in the news in which institutions have refused to allow assessments or the provision of made within their walls. St. Paul's Hospital was an example where a man had to be transferred out. He had to reduce his pain meds in order to be competent at the time over at the other hospital. There was a delay in having the ambulance to transfer him. He was in agony for hours. Eventually got transferred. The Alberta cases he heard about, one of them, the barriers were just such that the person never actually was able to access made. The other two, they were forced out, one of them having an assessment effectively in a bus shelter across the street from the hospital. So it's not going well for the Deputy Minister of Health in Alberta right now. Newfoundland Labrador took a different approach. And they've actually said patients and residents must be able to request made. You have a duty to refer as a provider. And interestingly, faith-based facility must provide a private space for the provision of made on site if transport will in the view of the made team, not the faith-based institution, cause the patient or the resident undue suffering. They actually have, apart from Quebec, I think the most protective of patients access position. It's very difficult to find that statement. It's not online anywhere. But that is the policy. Quebec, in its legislation, hardcore, institutions have to provide. They have an exception for palliative care hospices, but not faith-based institutions. Nova Scotia, at the moment, we are without a policy. And I will come back to that. So at the moment, effectively, St. Marcus Hospital, which is a faith-based hospital, it's the only one in Nova Scotia, is allowed to refuse to allow assessments and to allow the provision of made. It is the only hospital in Anaganesha. So what lies ahead? Policy reform, policy reform where you say, for instance, you allow forced transfers, except where the transfer causes suffering or risk of loss of capacity, that's really what I've been advocating here. Or you make an analogy to the birth of a Dutch princess, I love that, Princess Margaret in Ottawa in 1943. They had to declare a room in the hospital there, extraterritorial, like not part of Canada, because she couldn't be born outside. She could be born in a foreign country, but she was being born here because of the war. So they said, this room is not Canada. And so I figured if they could do that for that, couldn't we have a statement like this, any room in any St. Marcus building, within which a patient wishes to be assessed for or provided made, shall for the period of the assessment and the provision and to the extent of actual use for such purpose. And I took all the language from the Dutch proclamation because it was a government proclamation, should be outside the scope of the Mission Assurance Agreement. They held the St. Marcus and under the authority and be the responsibility of no Scotiahalp authority. We could do that. We will have more terrible cases. We'll have our own bus shelter cases in Nova Scotia and they will happen across the country and we'll end up in court. If this doesn't get fixed, we're going to court. This is a charter, right? It's really lucky that if you type into Google Images, watch this space. You have an endless supply of these. So I just will keep going with my little watch this space. It's sad that so many of the issues actually end with watch this space though. But that's where we are. Okay, the outstanding federal issues, okay. You'll be familiar with some of these and certainly advanced requests. And I suspect a number of you who are here today, that's why you came with the last bullet on this slide. Requests made an advance of loss of capacity. So under the legislation, interestingly, this is unusual. They've mandated a review of some issues. So they said that the Minister of Justice and Health have to get independent reviews done on three issues. Mature minors, so individuals under the age of 18, who understand the nature and the consequences of the decision. This is 18, that's excluded. Advanced requests, so requests that are made in advance of loss of capacity. And made for people whose sole underlying medical condition is a mental illness. And they had to report back to Parliament. So they commissioned the Canadian Council of Academies to appoint an expert panel. Which they did, and that panel had to answer the following question. What is the available evidence on and how does it inform our understanding of made in the case of the three issues? Given the clinical, legal, cultural, ethical, and historical context in Canada. An exhaustive assessment of the evidence was done. I can tell you it was an exhaustive first hand experience that was on that panel. No recommendations were made, and that is because that was not in the mandate. That was explicitly not in the mandate of the expert panel. We weren't allowed to make recommendations. So it was an assessment of the evidence, and those reports were delivered into Parliament December 2018. Available online, just Google and the Canadian Council of Academies, and they're there. Meanwhile, Nova Scotia's own Audrey Parker, I'm sure some of you in the room, knew her, I didn't have the opportunity to know her, I just know about her. So she entered the scene, and in her own inimitable way, she made her mark on this issue. Audrey had terminal cancer, and she wanted made, at some point. She met the eligibility criteria, but she wanted to try to have one last holiday season. So this was this fall. But because of her cancer, type of cancer she had, she couldn't be confident that she wouldn't lose capacity and then lose her eligibility for made. So she elected to have made earlier than she wanted to, in order to avoid losing the chance of having made. In her own words, I think we hear the case for changing the law. She said, I think once I've signed the papers and have agreed it should stand. But I still have to worry that if I lose my marbles, that they won't do it. And then I'm going to die poorly. She said, I wanted to make it to Christmas and New Year's Eve. I pay every time of the year. But I lost that opportunity because of a poorly thought out federal law. I just can't gamble with my end of life and the pain I endure. There are some other troubling scenarios in relation to advanced requests. And I'm just focusing on advanced requests of three. Can come back to the others, but limited time, so I'm focusing on this one. The other troubling scenarios are this. When self-administration doesn't work, you've got that problem that I pointed out you're not capable anymore. So the government's arguing your consent's not valid to an injunction. What happens if you have an unexpected loss of capacity while you're waiting? If it's expected, you can cut out the 10-day waiting period. But if it's unexpected, you're inside that 10-day waiting period, and then you're just out of luck. Or the provider is scheduled to come on Monday, and you think you're fine. But you don't make it. You then lose the capacity to have, you lose the opportunity to have made. And provider unavailability delays are also an issue in relation to this. We had a case, Stephanie Green, who's the head of the Canadian Association of Made Assessors and Providers, tweeted about this last week where she had, she was trying to get to someone, the scheduling is impossible, there was a delay, and lost capacity. So loses the capacity, loses the opportunity for a man. So where to from here on this? Well, we could amend C14, amend the legislation, and say that everybody is eligible if they give consent in advance after they've been assessed and found to have met all the eligibility criteria. That's the assessed and approved, which is coming to be known as Audrey's amendment. You could also have a rule that says anytime after one is diagnosed with a condition that is reasonably likely to cause loss of competence, or after a diagnosis of grievous or irremediable condition, but before the suffering becomes intolerable, you can make an advance request and if you lose it, you can have it. And that was the recommendation from the special joint committee of the House and the Senate before the legislation was introduced. Or you could say after having been diagnosed with a grievous and irremediable medical condition, understood in the Carter way, but not yet experiencing intolerable suffering. And that was the recommendation of the provincial territorial expert advisory group that reported out in the December before the legislation came out in the spring. The other possible path is litigation. And if we don't see amendments to C-14, we are going to see litigation. In the fall, then Minister of Justice and the Attorney General, Judi Wilson-Raybould, who had championed C-14, in response to inquiries triggered by Audrey's case, said the following. We're not considering changing something in the legislation. She said we're confident in the legislation. We've brought forward that it finds the right balance in terms of being able to access medical assistance and dying, protecting the autonomy of individuals to make the appropriate decisions for themselves, as well as protecting vulnerable individuals. Now this quote was a bit of a kick in the teeth to those of us on the expert panel who had just spent an extraordinary amount of time and energy doing the assessment of evidence to be told she's already made up her mind. That's what came out. But then, was it just last week? It was cabinet shuffle. And Minister of Justice, Attorney General David Limiti, took a slightly different tack. So he has said, I'm interested in watching what happens and what is proposed, but I won't commit the government to doing anything more than that. Well, it's not great, but it's better than what we have before. We're watching the court cases. We're watching what other people say. We're watching the impact on the ground. As I think any good government does, but in particular for this piece of legislation, because that's what we promised we would do when we passed it, he said, we saw it very much as a process. It's hard to say what will happen, especially here, given the election timing. And that cuts both ways and people may want to talk about that. You will have much more insight into that than I do. Finally, the outstanding issues in no scotia. The fact that we have no made program, we have no made policy. And the only official word is on the website, and it includes incorrect information. Let me tell you about a few of these things. So on the absence of a made policy, the Nova Scotia Health Authority website says, the Nova Scotia Authority does have a draft policy. However, because the legislation reached royal assent only recently, I pulled this off, I checked it still there yesterday. The processes outlined in this document, specifically contact by calling, will apply until this policy, including consultation with stakeholders, is complete. Two and a half years is recent. The legislation passed only recently. And what consultation? My invitation got lost in the mail. The invitation for the made providers in Nova Scotia got lost in the mail. Well, I don't know what consultation. We're at 950 days since the passage of the legislation, and we do not have a policy in Nova Scotia. I think that's a scandal. On the mistakes point, on the website, which as I said, it's the only official source of information from the NSHA, you will find, for instance, the following. The federal government has committed to further study as it relates to these exclusions. However, at this time, the following are excluded. Requests by mature minors, advanced requests, and we're mental illnesses of soul and deline medical condition. That is false. It's not true that people with mental illnesses of soul and deline medical condition are excluded under the legislation. I have a letter from the Minister of Justice, and Sody Wilson-Rabel, saying that the NSHA has been given that letter. That is still on the website. It's not true. Also, they say, we are waiting for clarity in relation to reporting requirements, and we'll provide information as we receive it. The federal reporting requirements have been enforced into November 1st, 2018. And if you don't meet them, you run the risk of a penalty of up to two years imprisonment. It's not right to have that kind of false information. When you have no policy, you have nothing else to give guidance to people. So honestly, the path ahead on that one, I don't know. I'm really flummoxed. Don't get to use that word a lot, but it fits here. There's no excuse, and I don't understand, and I can't figure out how to move the NSHA on this. I've tried everything that I can think of. So maybe in the discussion period, too, somebody don't have a good idea. I hope so. At any rate, in some, I would say that there's a really long road stretching out behind us. We look in a rear view mirror. We see the path we've traveled to get to where we are today. But if we turn to look at the front windshield, there's a long path ahead. There's a lot we still have to do. But I would say that if we keep in mind those people who've been helped by having made illegal in Canada, they've either accessed it themselves, or they've taken comfort from knowing that it would be available to them if it got to the point where they felt they wanted it, then I think we've got the fuel for the journey. And now it's your turn. Open the floor for comments and questions and discussion. Anything you want to say? Yeah. In the last two weeks, others in the hearings have started changing a lot of issues to talk about. And a group representing challenges with disabled people in Canada likened any changes to Nazi Germany. Yeah. How chilling and effective they'll have from the loss of a good change. I don't think it will because that's actually a really old argument. It's been made throughout the entire time of trying to have made become available in Canada. It was made against the changes. It'll be made against any change. I think it's lost some of its force. I think people recognize it as an inflammatory rhetorical move, in my opinion, because I do not think that you can reasonably characterize anybody who is engaged in this debate and wanting to have the law come out a certain way as being Nazi or like Nazis. I think it's completely unhelpful analogy to draw. I think you can object, I think the public policy debate about advanced requests about mature minors, I think we have to have a really robust public conversation about it and we will disagree about it. But we need to base that on evidence, solid arguments, not name calling, not inflammatory rhetoric, but let's have a really solid, robust public consultation on this. And if we want a model for that, look to Quebec because Quebec went through a process of public consultation because it got to legislation before we did. And honestly, it was an amazing process. It was so nonpartisan and it was very much about, let's figure out the questions we need to ask, let's find the evidence we need, let's work our way through the arguments, let's talk to everybody, let's hear people's concerns, let's design the legislation, let's move forward together and they did it. And as a result, they have a piece of legislation that has much more buy-in from the community and I hope we do that for the three issues that are the federal ones that are outstanding. Can you please ask about the diversity of mental illness? Yes. Has that changed recently? Because I did attend also a public lecture with them in the religion medicine school and it was a lot better than we did make that statement. But that is if it's only, if you only have mental illness and you are excluded, get access to it. And that's wrong. Nothing has changed. The legislation is the same. What's going on is that in fact, many people who have mental illness as a sole underlying medical condition are excluded because they don't meet the eligibility criteria of natural death has become reasonably foreseeable. But they are not excluded. There is nothing in the legislation that says if you have a mental illness as your sole underlying medical condition, you can qualify. Mental illness doesn't qualify. There is nothing there that says that. And that's why I wrote to the minister because people were saying this. And what weird is that, because what people were doing was they were reading into the three issues being up for review. They thought that meant they were excluded, but it doesn't. What it means is, I mean, two of them are excluded, but not by virtue of the call for a review. They're excluded because there's a rule that says you have to be 18. And there's a rule that says you have to have immediate reconformation of consent right before provision. But people read them as if that's what it meant that they were excluded. But they aren't. Give you an example where you can think, well, how would you ever qualify? There's at least a couple. One is, for instance, you could be in an advanced state of irremediable anorexia, so incurable, advanced state of decline capability. Enduring an intolerable suffering that's irremediable by the means acceptable to you, and you're not sure that has become reasonable for a seeable. So you could qualify, and you could be capable, right? And you could be 18, and so it could be there. The other is because of the weird thing that the minister said about being 89 years old, so k-carder qualifies. Arguably, you could have a mental illness as your soil and blind condition, if you're old enough, you'll meet naturally for seeable, reasonably foreseeable because of your age. Which is, I wouldn't want to rely on that because I think she, I think they, I think they thought k-carder was terminally ill, truthfully. I don't think they realized she wouldn't qualify with the way they wrote the legislation. So the letter is available if people want to see it where the minister says, no, not excluded. And in fact, it's actually in the CCA panel reports are clear about that too. But what this is studying, the mental illness report, is more about thinking through what does it mean to have some of the soil underlying mental condition, which is a mental illness, access made? What are the complexities of that? What do we need to be concerned about and so on? And in part, that's a bit of an anticipatory question. Because if the charter challenges are successful, reasonably foreseeable, we've gone and then the doors are wide open on mental illness as a soil underlying condition. What keeps most people with mental illness as soil condition out of eligibility for made is the reasonably foreseeable criteria. So that gets struck over there. We then have a lot of questions about how are we going to deal with this? Because to not allow it is discrimination, it's discrimination on the basis of mental disorder. So how are we going to do it? So it's looking at capacity and prognosis and how do you tell whether a condition is incurable and all kinds of things like that. So when somebody next stands up and says that, or on the website, you just say, where do you find that in the legislation? It's not there, and the minister has said it's not there. I'm a very good health professional and I have been involved in such an involved time. I guess one of the things that I feel really challenged by is we can, I today could complete a personal directive. And that personal directive I can say, if I'm extremely ill and there's no chance of me remaining my prior prognosis status, I don't want to be resuscitated, I don't want to be fed, I don't want support. And I don't have to still be in my right mind when the time comes to say yes that's what I want. And I guess it's definitely the right time, and I guess I really, really struggle with that. Well, what you've articulated is one of the principle arguments for allowing made-through-advanced requests. Absolutely, one of them is to say, what is the difference? The end result is the same. Both are about exercising your autonomy, ending suffering, protections are there. Why would we allow one and not the other? I think that's a very strong argument. I support advanced requests. And one thing that happened when we got the legislation we got, when we got the Carter decision, was that the argument was made, well, wait a minute, you're allowed to, not in the advanced directives context, but in the, you're capable context, you can refuse anything. I can refuse blood, or I know, all I need is blood. And I'm going to live, I can refuse antibiotics. I got a pneumonia, you know, I don't care, but imagine like, it's a really easy pneumonia for some, somehow. I got an easy bug. I got a really good bug when we got the drugs and I keep telling, I can refuse it and I'm going to die. I can refuse food and water. I can refuse artificial hydration, nutrition. I'm capable, I can do all that. Why can't I ask for and get made? And that argument was persuasive in the court. One of the things that, the reasoning that Lynn Smith offered us is to say, there isn't a morally sustainable distinction between those two things. And so if we're going to allow it here, we need to allow this. And we need to recognize that it will happen in the same context of extraordinary protection. And in fact, made, I would say you get much more protection around made than you do around refusal to treatment. And similarly, if we get advanced requests for made, you'll get much more protection around it, because it'll be a federal system, and it'll be really tight. And you will around advanced directives or you'll just go to personal directives, because that's actually not the best regulated system that we have. But so your discomfort is, I would reframe it as an argument. And a significant pillar in the suite of pillars that sustain an argument for advanced requests. Where does the opposition made come from? Like, it's simply religious ideology, is it more complex than that? It's more complex, religion is certainly a part of it. And certainly more so in the context of, for instance, that, whoa. That's a light, that's not a power outage, because this stuff's still on. Somebody just leaned there on either side, and somebody can just help us out by bringing them, whoa. Okay, we don't need the screen, that's okay, we got lights, okay. Is that a sign? That is a sign, and the scene, okay. So, sometimes it's religious, so it's St. Martha's object, the objection to allowing it within St. Martha's is religious. A lot of the objection to assisted dying is religious, because it is contrary to many religious denominations, for sure, not all. And a lot of people who identify as, for instance, Catholic and so on, actually support assisted dying. I was shocked by the strength of the support and some of the polling that was done prior to the legislation. But it's not all there is. So you also have some people who object because they have a conception of palliative care that they believe doesn't include hastening death, and so they want no part of it. I actually think we're witnessing a bit of a battle for the soul of palliative care, almost. There's a real shift in generations around palliative care, and I think in a number of years we're going to see palliative care actually doesn't hold on to that view. It holds on to the view that some people will participate and some won't. But not that palliative care, by definition, somehow excludes me. You also have real concerns about some of the advanced request and the getting rid of recently foreseeable from some people with disabilities and some groups that represent some people with disabilities. And I say that advisedly with the sum and the sum, because what often gets presented and more so in the past got presented is if persons with disabilities were all opposed to made, and that's simply not true. And so, yes, there is a strong community of persons with disabilities and there are advocates who are opposed. But there is also a really strong community of persons with disabilities who support made. And all three of the plaintiffs would be described as persons with disabilities. Joe Arve, who successfully argued the Carter case, is a man in wheelchair. There's a lot of people who think, Chantelle Cedicler. Google, Chantelle, she's a senator, a former Olympian. And she gave her maiden speech in the Senate on C-14 and talks precisely about what it is to be a person with a disability. And she's talking against the recently foreseeable requirement. She's basically saying it's paternalistic and patronizing. So on the one hand, there's a sense that it's paternalistic, patronizing, and discriminatory. On the other is a fear, and we have to confront this as a society. And this is what I mean about having a conversation that's full and robust and respectful of what's being put on the table and what we can do about it. It's the fear that persons with disabilities have not been well served in our society. The services, the health services, the community service, all the circumstances are struggling for that. And so fear that if you introduce this, will those services disappear? Will there be pressure on people to access MADE? Will their lives just be worse than they could otherwise be because we have this? The evidence doesn't support that, but that doesn't mean it's not important to talk about it. And to hear, and to work through, and see what the, see what the stress is. So, and then the final argument is slippery slopes. Which is if you allow this, then this, we accept, but we don't accept these. Then if you allow this, we're gonna end up over here. And the evidence on that is strongly against that. We've got decades of experience in Europe and the states now. And that argument really just was rejected in the court and should just stay rejected. The other stuff, and I think it's what, I think we wanna do that, where we park the ones that aren't supported by the evidence or they aren't supported by logic or law. And then we focus on the ones that are, that are a real part of people's lived experiences and their fears and their concerns. And then we work together to resolve them. At the same time, we respect people's charter rights. Yeah. I have a question. In terms of the settings that the care that you're talking about for me, in terms of application, they were largely acute cuttings. But we're noticing that in terms of long term care. Yep. In terms of being in policy implementation of the program is that which is coming into effect, can you give any idea what some of the potential barriers would be, or some of the issues in terms of more problems that agencies carrying that over, allowing that to happen on their grounds or in their ability, is a part of the power of the care package? So there's lots of different things going on in that question. So no, no, no, let's just talk about all kinds of great things. Because one issue relates to where's the funding of it? And my best understanding of this and anybody in the room can correct me is that it is, it flows with the practitioner. So it's not like the, it's not going to have a financial implication for a long term care facility that the practitioner provides the service and they get paid for providing service. Whether it's allowed, absolutely allowed. Sorry? Sorry, I'm just saying, I wouldn't be considered like part of the department of control abilities or whatever they could budget for that. There's fee for service and the coverage of the drugs. That's what it is, it's a service, right? You have an assessment and then you have a second assessment. You have the provision. You gotta go get the drugs from the pharmacy. It's all, it does, and it, whether it can be allowed in an institution, guarantee, absolutely, it can happen anywhere. There is nowhere that made is not allowed in, I mean, a public space that would traumatize people, that kind of thing, of course. But, but, you know, no conciliation. Whether a facility would have to allow it, it's interesting because what, the difference between some of the, well, to me, in large part, it depends on if they're getting public money, then yeah. If people don't have a choice as to where to be, then yeah. It's people's home. And so, you know, there was a case out in BC where a fellow was in a Jewish retirement home. He was not, he didn't share the beliefs that were opposed to made. It was his home. And he wanted to have it there. And they said no, and then what ended up happening is the doctor went in, took a picture of it, and gave it to him. They then made a complaint against her, surprisingly. But part of the analysis was why should he have to leave his home in order to, to have this. So there's different analyses, right? Like, so in an acute care setting, you're not going to have the home argument. In a long-term care facility, I would be reflecting on what is it, what is someone's community? A lot of people in, in a long-term care facility, that is their social world, and to say, oh, you have to go somewhere else. We have to think that through before we say something like that. And one quick little thing too. When I said there's no program, what made is happening in Nova Scotia, for sure. I just don't want to leave anybody with a mishap for here. It's happening. We just, and we have a central number and there's some coordination and so on. And we have a number of providers who've stepped up and are doing this. But it isn't a program such as we have in Alberta. And so, and it doesn't, it's not a proper self-referral program and so that's what we, that's what we, we need a coordinated program that controls all the elements and does the wraparound, including things like family support, what do you do when you're the person who gets left behind? All kinds of things like that. So I haven't heard problems yet with respect to long-term care facilities. People warning at us and not being able to access doesn't mean it's not happening. Are you on this or a follow-up? It's a two-finger one. Okay, yes. No, I just, I'm a favorite analogy about the long-term care system. Oh, great. And in Nova Scotia, it does not matter if you're a proper or not, the rules are all exactly the same. Okay. The other thing is, although it may happen, the, the instrument of one of the recommendations in the paper in the last, last week is an upgrade of the 70s nursing home app. Aha. But until that changes, nurses in long-term care are not allowed to start therapy. It would be BON, most communities coming in, as well as the physician that assigned to the facility or if he didn't want to, another physician would do it. Yeah. So there's, and that's what's happening a lot, right? It's the physicians, the physicians are more, I think you're finding the family physicians will do assessments but not be the providers and there's a group of providers. So they would go in, they got their bag. They might not like to do the IV. I don't believe that they're, they're going to be exempted if the long-term facility goes to a physician. Set that up and you won't do it. All right. You're going to have to leave your home and go to the hospital for that. Yeah, I don't. Okay. And we're kind of the flip in the sense that Newfoundland, my understanding is they actually have no faith-based publicly funded hospitals, but their issues in their long-term care facilities. And for us, we may be, we may be, yeah. Over here. Well, not all the way to that. Yeah. Is there any effect on like insurance policy? No. Which is fascinating. Yeah. I was on the provincial territorial expert advisory group and it's the first time this issue actually got surfaced and we had the Canadian life insurance people come in and I was all set to be like, okay, you guys don't get in the way and what do you have to change because you have two-year rule and then he said, oh, we have no problem with respecting life insurance policies as long as the legislation when it happens is followed. What? You even been writing? Sure. So, stunningly, that is the case. So, so quick thing, the two-year rule that people hear about, that's basically that if you, you know both circumstances, you purchased your insurance and then within two years you commit suicide, your insurance doesn't go. And that's because of an information asymmetry, right? You can't go do that. But that's actually not the case in all kinds of life insurance because that's individual. Group, it's actually not a provision in most, if not all life insurance, group life insurance, which I did not know either. So that's that. But they also have very clearly said life insurance made not a problem. Follow the legislation, you're fine. I just want to say there's a few of us here that are Audrey's friends and we're here always talking about it matters and she was so overwhelmed with what she did. I just wanted to say that. She was so devastated actually that she had to pick that date before she had to. And I just wanted to tell everybody that, you know, the cowardice that she felt, and we didn't know she had a lot of requirements that you said that was open after she had it. Yeah. She was still in action together. And she was very, very good to come up with what she did. You have to know Audrey to know, but only Audrey can do that to get it right. Obviously, there's a lot of ways to get it changed and, you know, when you run out of steam, when you're fighting this fight, then you just think, okay, what did Audrey go through? You know, like, get yourself back out there, right? Did you work on one? Well, yeah, I'm a friend of Audrey's, but just along that note, I never actually heard that they chose probably Audrey, but I just want to know why a country like Switzerland is so far ahead of Canada. Why is Switzerland far ahead of Canada? Well, Switzerland in particular is kind of funny. I'd say almost inadvertent. Their criminal law was for, it's an old criminal law that this affects. They don't have made legislation. It's just that their criminal law required that you have a certain kind of motive for assisted suicide to be illegal. And that's not what's going on here, therefore it's not illegal. So they didn't have to change anything to make it be legal. Other jurisdictions very much did. And then you could ask the question of why are they so far ahead. And I think you look at the, you know, the analysis of the culture in the Netherlands. In many ways explains it when I've read about it. A different culture explains what's going on in Oregon and Washington and the other American states. It's the absolute like individualist. And that's what has propelled the American model. The Dutch model is much more a liberty model. And why would you allow suffering to continue? And that's what this person wants. And so that's how that went. The Belgians then influenced by the Netherlands, Luxembourg then influenced by Belgium. And so you get that swing of the countries. That's what's when it's just this sort of almost a fluke. So that's why you wouldn't explain. There's not a cultural thing that explains the difference. It's just actually how they were there originally. That's my understanding. Yeah. Is there any day review that you mentioned for the advance request under Bill C-14? Do you guys submit a report? Yeah. What is the obligation now on the settlement to do anything about that with that ban bill C-14? There's no obligation for them to do anything with it in the legislation. I would say there's a moral obligation on them to have a robust public policy discussion about what the law should be on these issues. I think they have that. They hit pause. They said, we're not taking a position on these issues in effect because we need more time and these are the ones we want to study. So when you do that, I think then you have an obligation to go back. And I think you also have an obligation for people who wrote those reports. The idea was this is to be evidence that then fuels a public discussion and then the policy makers will take decisions. And I think if we weren't right where we are on the timing of the election, you might even then have seen an announcement of, I mean not actually with the former minister who's very certain that they got it right. So I don't even have confidence that she would have put a committee together. But with this one, I would think, say we had two more years till the election, it wouldn't surprise me at all if this minister announced a committee, a parliamentary committee, because that would be your next step. You've got this great assessment of evidence. Now let's have the consultation. Let's go across the country. Let's talk to Canadians. Let's find out not what's the evidence, but what's the social, and moral views of Canadians on these issues? What should we do? And then either come back to Canadians and say, we have now made a decision. We're not changing the law at all. Or these are the amendments that we want to make to the legislation. We want to propose the legislation. So there isn't an obligation. There's an obligation for a five-year review of the whole of how is the legislation going. One of the things that I've heard little rumblings of is this notion of, oh, but this is the CCA, because I'm saying, you ought to do something with this report. Well, it feeds into the five-year review. And my response to that is, no two-year-old evidence, that's stale. You don't do your evidence assessment two years before you do your review. So it clearly can't be that. And clearly Parliament didn't intend for it to be that. Because they otherwise would have said, have your reviews in four years, after four years, and then you do your review in five. That makes sense. So it's public pressure on them. Is this five-year provision too? Five-year provision, not of the three issues, it's the whole thing. Yeah, five years they have to review the whole thing. But this election thing is going to be interesting, because it cuts both ways. This is an issue that a lot of people, they're opposed to, and then it's an issue a lot of people want to advance request. And that's what I'm most curious to see, whether that one, the others, I don't think will become election issues at all. But the advanced request one might, because so many Canadians want it. And see it as the argument of, wait, I can have a personal directive, I can do that. So I don't know if that one's not going to be an election issue. And so I'm confident that they are practically trying to figure out what to do about this. But I don't know what they're going to do about it. It's also difficult to see how you can have a fourth case of those advanced terms as well, right? If you look at all of the other cases where you've had an individual who's critically ill and suffering, it's kind of a quarter-century case. But if you're talking about an advanced request, and somebody says, I definitely want this, by the time the case rolls around, they don't remember that they wanted it. Oh, how do we mitigate that? Yeah, but we can do that. If we'd known Audrey, we'd met her a little earlier. I think we could have had, we could have pulled together litigation on that. There have been other cases where there's a plaintiff and you think, okay, but it hasn't worked. But it will, it will. And they are separate cases. But yeah, nobody, don't think the charges that are happening now are not at all about advanced request. So the issue of the litigation on it will be a separate case. And you have those issues, but Gloria, Kate Carter was dead before the case even started. And Gloria Taylor died during the process of it because of an unexpected, actually an unexpected infection. So as long as you can get far enough and you have an entity like the DC Civil Liberties Association behind it as a public interest standing plaintiff, you can carry the case the rest of the way. So it'll be, it's tricky, but it's totally doable and it will happen if the legislation doesn't change. So I'm kind of charred because of my experience there. And I did evolve in many, many cases. And my experience and the evidence seems to indicate that substantial distress of the main motivator took the request from me for more than for physical suffering. And yet these are, have not been really part of the dominant conversation which is the legal and medical reference. I'm wondering what is the extent of conversation around that substantial distress from the spiritual community hopefully beyond some doctrinal declaration because that's what's stirring in the heart of the people who are asking for me and what it's addressed well. They die peacefully in very less baggage and most of the time it's not addressed and so they alleviate physical suffering but they carry their existential pain So I don't know if it's a matter of terminology but the data from Europe and the states wouldn't support that existential distress is the main cause of the request but maybe if you're meaning something like loss of dignity because that's what shows up and if you are then that's in that realm. Autonomy, loss of dignity and the other is the loss of the ability to do the things that give life meaning. It's not, the leading ones are not pain they're not burdened on family it's quite interesting and the data is really strong on this. So what I think that suggests to us is we need to attend to what people are, why people are asking for this. I mean somebody brings it up and they're like oh yes let me call the person and they'll be right there, of course not. There are these incredibly robust conversations and I've seen you speak before and I know that if you were in a room with somebody trust me it would be a beautiful conversation very respectful, very robust, very deep. Not everybody's like that but that is very much the case. So we need to have those kinds of conversations we have to ask why are you why are you asking me about me? What is it that is making you want to say look my life is I don't this suffering is intolerable the condition is intolerable I want it to end. What is it? Is there anything we can do? That's in the legislation we have to talk about the alternatives including palliative care but palliative care can fix everything especially when you're talking existential distress lots of dignity, lots of ability to do things that you want to do can't necessarily sometimes it can especially around dignity but we have to have that conversation to figure out is there anything else we can do and if we can then we offer but if the person doesn't want it will we say okay then we're going to provide. So I think there's a lot of there is a lot of conversation about the loss of dignity, the loss of the ability to do things that bring your life meaning because those are the major precipitators of the question but I don't see it as in the language of existential distress I would have said that was lower because I wouldn't have made the connection to loss of dignity saying they don't want to allow made okay so it's religious opposition it's a concept of palliative care that they think is not consistent with made it's arguments about slippery slopes which are not supported by the evidence it's concerns about the impact on people with disabilities and the messaging it says about people with disabilities in the context of advanced requests a different set of arguments are made where people are raising concerns about for instance is it the same person before you lose capacity after you lose capacity is the same person or how do you know they didn't change their mind those are common arguments I don't think they're persuasive at all no small part because that's exactly what you could ask of a personal directive and if I say I don't want food and water if I'm in a persistent vegetative state you don't get to say well maybe she's a different person or maybe she changed her mind you don't get to you have to stop giving me food and water but those are the kinds of arguments that are made in particular about why not to do advanced requests another one is the impact on health care providers this is another example of the notion of how do we have these robust conversations and hear what people are trying to get at what are people concerned about because one of the issues is what it's like to be a health care provider caring for someone who is going to have me through an advanced request also I would say we have to talk to them about what it's like to be a health care provider for somebody who is dying through VCED not giving food and water is so built into the fabric of being a nurse the caregiving side of it being a friend, a loved one with somebody to not feed you know it's this sort of primal so we gotta talk about that we gotta figure it out one of the things that's important today is that while I believe I have a right to medical assistance and dying there are limits on that right that are legitimate for example if by doing so I'm causing harm to someone else and it may be that it's a limit on whether I get it at all or maybe a limit on how I get it so that's why I'm willing to say for instance that some providers you do not have to participate because my right to have it doesn't go to saying you as a provider have to be the one to do it that is a harm but it doesn't go so far as to say you get to say nobody around you we'll give it to you you spoke a lot about the provinces and the situation would you be able to speak further on the ace of the air towards the legislation and the facts itself right, so Quebec is the province that has its own made legislation that brought made in before the federal legislation they did it under their health power it was a I think a brilliant move I think it was an andron around the federal jurisdiction over the criminal law because it was prohibited under the criminal law and the feds have power over the criminal law and the province of Quebec said we have jurisdiction over health so we're gonna call it health and we're gonna do it and basically they were just daring the feds are not gonna come after them right so they have their legislation the biggest difference I would say is their legislation is covers the waterfront of end of life care so it includes palliative sedation it includes withholding withdrawal variety of things it also has an oversight system they have a commission they are monitoring the cases and so on it's a much more robust system it's more limited because they restricted it eligibility criteria in Quebec is you have to be at the end of life so that's actually narrower than C14 and it's surely narrower than quarter but basically what happened with Quebec is they put it through they're the first ones at the gate they're being cautious they put it out the gate that way and then we have quarter and so they sort of say okay well we'll have to change ours because obviously it's unconstitutional with that end of life but then they're sort of like yeah but there's going to be federal legislation and okay let's just we should just wait and harmonize but then the federal legislation was narrower than I think they thought it would be so they're like well do we harmonize and then 10 days later there's the lamb case that gets started anyway so maybe C14 is going to be gone anyway so I think Quebec has just sort of been you know waiting but they're going to stop waiting because with the Truchon case being in court they're seeing what they're going through the pressure on the government to harmonize their legislation with Carter which would be to take out at end of life and in fact to go to advanced directives they've already had a committee working on advanced requests in Quebec they may within the next six months come out with an amendment to their law that allows advanced requests which will be in a really interesting collision course with the federal legislation the territories they're not different but the law applies they they don't as far as I know have any legislation that even sort of takes specifics of it on so they're rolling out the system there's made providers it's going on I don't know the numbers because they're I think the numbers in none of it are the ones that we don't know but I'm not 100% sure but it's it's a law why do you think the Carter case were on changed the legislation but Rodriguez went back a decade ago and it's gone flat and it's just a progression in the society or were there differences in the case yeah well you know they actually had the same disease Sue Rodriguez and Gloria Taylor both had ALS so the difference between, so in 1993 Sue Rodriguez some people weren't around hard to believe Sue Rodriguez challenged the criminal prohibitions she lost by a 5 to 4 margin by the closest of 5 to 4 margins so it could have gone either way in 93 but then you fast forward to 2011 and you have the case the biggest things that changed in my mind let's see one the facts in the world to argue we had 20 years of data from Oregon and the Netherlands and Washington and we were able to show there's not a slippery slope so Rodriguez was concerned about slippery slope Carter is, there isn't a slippery slope the other change was so the facts on the ground changed and then there was legal change so there were new principles so section 7 is the right to life, liberty and security of the person not to be deprived except in accordance with the principles of fundamental justice so if you deprive people of those rights in accordance with the principles of fundamental justice you don't breach that section so what happened in Rodriguez is they're like, oh yeah there's a breach of the right but it's in accordance with the principles of fundamental justice so it's okay what happened is over the course of those decades there were cases that developed, what are those principles of fundamental justice that were spelled out in the charter we just sort of the courts figure out what they are and so different principles came along and so we were able in Carter to argue on over breath and we won because we had new jurisprudence, new decisions out of the Supreme Court of Canada that gave us new arguments so it was both of those things plus backdrop huge social change the level of support, it was always a majority as there was a majority of Canadians supported decriminalization but I would say that the depth of the support the strength of the support the interesting the support in communities you wouldn't have expected it so the ability to demonstrate support from people who identified as very religious support from people with disabilities all of that was also in the ether you're not arguing that in court but they don't live they don't live in a vacuum so those would be the things that I would say were the greatest factors in why we had 5-4 and then 9-0 and I would also say Lynn Smith's judgment in Carter is brilliant it's very long but it is actually really accessible and she goes through all the evidence really carefully in the legal analysis highly recommend it to you I don't think that hurt the Supreme Court of Canada that there was such a powerful trial level decision just another factor and I will be just so you people know we'll be wrapping officially at 8.30 I'll stick around and answer things but we'll actually tie a bow on it at 8.30 I have a question first I'm a Canadian provider and we're all underage friends so we really wanted to tell you that every assessment I've done for May, every patient has talked to an audience so she has had just paid profound impact on the culture of this program and individual acts of the tooth procedure and I have been involved in really feasible deaths that all started with them I'm going to guide you here my question was that as a provider I really perceive that there's a huge generational divide like everyone my age is like no issue frankly I feel a little bit worried your presentation because I didn't think about any of this stuff and I kind of raised my hand and said yes this is something I want to do but I'm wondering your evidence review did you see a generational divide among providers or even among some of the special populations that you talked about is there a demographic issue here where this is something that I absolutely have experienced that I've been teaching for one thing teaching med students for a while and teaching docs speaking at the conferences and so on and it hit home most just a few years ago when somebody in a med school came up to me after a talk and said seriously I do not get what the problem is it was like of course we should have made and of course this is a part of as a provider it's part of my care and the suite of services that I can provide somebody with and it was just the blunt way she said it and was speaking in many ways for her classmates this is just not an issue for us are you so I think you see that I think you see a generational change in palliative care because early palliative care was a lot of people who were very religious that's what pulled you to palliative care and you also had an experience of that first generation of nobody wanted palliative care to come to the door because it was like you were the angel of death I started palliative care we don't talk about death and we don't want to be sent to palliative care because that means you're done and they lived that kind of fighting to get in the door so I'm sympathetic to their hesitancy to be associated with made we've just managed to get people thinking palliative care welcoming palliative care and also seeing palliative care as enhancing life palliative care is not you live longer when you're on palliative care as do you if you know you have access to made but I think there's a generational thing happening in palliative care it's a much more technical specialty we're seeing that kind of thing I guess there'd be generational issues around religion that would shape things although the surprising rates of support across ages of people who are religious everybody will say the baby boomers are dying they're used to having total control that's what this is about they're going to make sure they control on the way out too there's all kinds of social dynamics like that but they do relate to and you know we've grown up with a whole lot more sense of I don't want to suffer and I don't have to suffer I don't have to suffer and so why is this not available and then also just the spread of the information I had a dear friend who's a palliative care doc and we would debate every year I'd be out in Vancouver and we'd have a big debate about it because she was opposed to me and I wasn't friends would just come and watch because we thought it was funny and then I got a call from her partner who said you will never believe it she changed her mind on me and it was the evidence it was the evidence on the slippery slope she took along her luck at the evidence and it's like no it's not there and that's what was really driving her so I've gone a long way from your question but lots of interesting things to say so many interesting things to say last question how do we get more access to names if there is a conversation happening about the number of people dying by the suicide and bloodletting not just because we've been hearing about their names but because people who otherwise wouldn't need healthcare are starting to have questions yeah I mean that's where I've been running because people raise concerns about the relationship with suicide it's kind of like elder abuse too it's like no because we're going to find elder abuse but if somebody is being pressured into it they're going to be having the assessment and we're going to say whoa this is not okay similarly if you're going to seek maid and it's the kind of suicide we would want to prevent that we're actually going to reach you and talk through alternatives and be able to help so I think that's there I think the evidence around suicide is absolutely lacking evidence that I've seen is that if anything your rates of unassisted suicide go down this does not have an impact of diminishing suicide prevention efforts or sending up unassisted suicide anything like that maybe that's partly why you know because people are getting caught it's hard to say why but we have to do a whole lot better at studying suicide prevention but the mental disorders report does look into this and there's going to be more being done on that in the next little while because it just isn't supported the concern about we have to do this to prevent suicide in moments of weakness which is what the government keeps saying no evidence to support that at all okay I promise I'd wrap so Raddy 30 thanks very much for being here