10 things to know about MAID in Canada

Speaker:

Jocelyn Downie is a University Research Professor in the Faculties of Law and Medicine at Dalhousie University. Her work on end-of-life law and policy includes: Special Advisor to the Canadian Senate Committee on Euthanasia and Assisted Suicide; author of “Dying Justice: A Case for the Decriminalizing Euthanasia and Assisted Suicide in Canada”; and member of the Royal Society of Canada Expert Panel on End-of-Life Decision-Making, the plaintiffs’ legal team in Carter v. Canada (Attorney General), the Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying, and the Canadian Council of Academies Expert Panel on Medical Assistance in Dying. She was named a member of the Order of Canada in part in recognition of her work advocating for high-quality, end-of-life care. She is also a Fellow of both the Royal Society of Canada and the Canadian Academy of Health Sciences.

Note: On February 2, 2023, legislation was introduced to extend the sunset clause on MAID for mental disorders until March 17, 2024.

Before I welcome today’s presenter, I’d like to go over a few housekeeping items. Everyone on the call today is muted. That said, we would love to hear your questions and comments. So to do so, please click on the question bar on the Zoom side panel and type your question there. Please keep it as concise and clear as possible, just so we can try to get to as many as we can. Unfortunately, we might not get to everybody. So if there is something outstanding, or if you have a question that’s more personal in nature, you’re welcome to email us at support@dyingwithdignity.ca. And that email is on your screen there. We will be sending a post webinar survey to everyone. It’s going to pop up on your screen after the webinar wraps up today. And that will give you the opportunity to share your feedback with us. If you could take a few minutes to fill that out, we’d greatly appreciate it.

This session is also being recorded so you can watch it later. And there’s no need to worry about taking notes. Now to introduce today’s speaker, we have Jocelyn Downie joining us today. Jocelyn is a university research professor in the faculties of Law and Medicine at Dalhousie University. Her work on end of life, law and policy includes special advisor to the Canadian Senate Committee on Euthanasia and Assisted Suicide, author of, Dying Justice: A Case for Decriminalizing Euthanasia and Assisted Suicide in Canada, and member of The Royal Society of Canada expert panel on end-of-life decision-making. The plaintiff’s legal team in Canada, or sorry, Carter V Canada. The Provincial-territorial Expert Advisory Group on Physician-Assisted Dying and the Canadian Council of Academies Expert panel on Medical Assistance in Dying. She was named a member of the Order of Canada in part in recognition of her work advocating for high-quality end-of-life care.

She’s also a fellow of both the Royal college, I’m sorry, The Royal Society of Canada and the Canadian Academy of Health Sciences. Thank you so much Jocelyn, for being with us this afternoon and I will turn it over to you.

Thanks very much, Kelsey. Let me get to my screen for you. There we go. Okay. It is a delight to be here with you all today. Excuse me. And to be a part of dying with dignity Canada’s first annual conference. I was getting the fun assignment of figuring out and talking about the top 10 things you should know about MAiD in Canada. And luckily in case I don’t include something that you are particularly interested in in my top 10 list, we’ll have the opportunity for questions after I talk. So without further ado, number one, what is MAiD? Well MAiD is the administering of a substance to a person at their request that causes their death. The old terminology for that was euthanasia now we call it provider administered MAiD. Second, it is the prescribing or providing of a substance to a person at their request so that they may self administer the substance and in doing so cause their own death, old terminology assisted suicide, new terminology, self-administered MAiD.

Number two, who can provide MAiD? Well in Canada, we’re quite unusual in the world. And that is because we allow both physicians and nurse practitioners to provide MAiD. We did this recognizing the professional competencies of nurse practitioners and the need to have access to clinicians across the country, particularly in rural and remote areas and having both physicians and nurse practitioners would enhance our access. I note here it is not restricted to any specialties. So you can be a family doc or a general practice nurse practitioner or geriatric. Those would be the ones you would expect, but you also could be a psychiatrist or an obstetrician. We have all of those providing MAiD in Canada. I also would flag here that there are palliative care physicians and palliative care nurse practitioner specialists who do provide MAiD. There’s a split in the community, but some palliative care docs absolutely do provide MAiD.

Okay. Number three, who is eligible for MAiD? Well to be eligible for MAiD, you have to be eligible for government funded health services. So that means you can’t be a foreign national from another country and come to Canada for MAiD. You have to be at least 18 years of age, be capable of making decisions with respect to your health. Have made a voluntary request for MAiD, not made as a result of any kind of pressure, and have given informed consent to receive MAiD after having been informed of the means available to relieve suffering including, and this is expressly in the legislation palliative care. Person to be eligible for MAiD must also have a grievous and irremediable medical condition. This is defined in the legislation as a serious and incurable illness, disease or disability. A person is in an advanced state of irreversible decline and capability and the illness, disease or disability, or that state of decline must be causing enduring physical or psychological suffering that is intolerable to the person and cannot be relieved by means that they consider to be acceptable.

Now you’ll note, there’s a little asterisks up besides serious and incurable illness. And that’s because until March of 2023, “mental illness” and I put the scare quotes, because it’s not defined in the legislation. Mental illness is not considered to be an illness, disease or disability for the purposes of meeting the criterion of serious and incurable illness disease or disability. That said on March 17th, 2023, that exclusion will be automatically repealed.

Okay. So that’s the eligibility criteria. Number four, what procedural safeguards must be met before MAiD can be provided? Well, the answer to this question depends on which track the patient is on. We now have two tracks under our law in Canada. Track one is for people whose natural death has become reasonably foreseeable and track two is for people whose natural death has not yet become reasonably foreseeable. So you may be asking what does natural death has become reasonably foreseeable mean? Well, I can tell you it does not mean that you’ve been given a 12 month prognosis or a 24 month prognosis or a six month program, indeed, any specific prognosis. And it does not mean that you have to be terminally ill. And I’ve continued to hear from people saying their clinician has said, you have to be terminally ill, not true.

Natural death has become reasonably foreseeable does mean either of two things. So it’s either sufficient temporal proximity, so for example, 12 months. Or you can have a predictable trajectory toward death. So for instance, when you get a diagnosis of ALS, which was the condition that Sue Rodriguez, Gloria Taylor, those will be familiar names to you they had, you are not imminently dying, but you are on a predictable trajectory toward death. So in fact, you meet natural death has become reasonably foreseeable. Okay? So with that, let me tell you about the procedural safeguards.

First, will attach to both tracks one and two and then some that are specific to track two. So for both tracks one and track two, you have to have two medical or nurse practitioners, be of the opinion that the person meets the eligibility criteria that I laid out. The request has to be signed and dated before one independent witness. The person must give informed consent to receive MAiD after having been informed of the means that are available to relieve their suffering, including being informed about palliative care. And immediate before providing the MAiD the person has to be given an opportunity to withdraw their request and the physician or nurse practitioner must ensure that the person gives express consent to receive MAiD.

There are two exceptions known as advanced consent and final consent waiver. And I’ll tell you about those in a few minutes. But first the procedural safeguards that are unique to track two. So in some circumstances there has to be a consultation with a clinician with expertise. The law says that if neither the first or the second physician or nurse practitioner has expertise in the condition causing the person’s suffering, the first or second practitioner must consult with a physician or nurse practitioner with that expertise and share the results of that consultation with the other practitioner. There are rules around what information needs to be provided. The person has to have been informed of the means available to relieve their suffering, including where appropriate counseling services, mental health and disability support services, community services, and palliative care. The reason palliative care is not in red there is just because it’s for both tracks one and track two, you have to disclose the means of the palliative care may be able to help relieve a person’s suffering.

The red here is not to designate significance, but it’s the distinction between tracks one and track two. This is the additional information you have to give someone if they are on track two. All right, the person must also have been offered consultations with relevant professionals who provides such available counseling services, mental health and disability support services, community services, and palliative care. There’s also a rule about the kind of decision making that the person has to engage in. Both for the physicians, nurse practitioners must have discussed with the person the reasonable and available means to relieve the person’s suffering. And they must agree with the person that the person has given serious consideration to those means. There’s also a period of assessment, reflection. There must be 90 clear days between the day on which the first assessment begins and the day MAiD is provided. There is an exception to this, which is if the assessments have been completed and both the physicians or nurse practitioners are of the opinion that the loss of capacity is imminent. In that case, it can be any shorter period that the provider considers to be appropriate.

But if loss of capacity is not imminent, it’s 90 clear days between when you have of the start of the assessment and the provision of MAiD. Okay. I promise to tell you a bit about these exceptions to the final express consent requirement. So recall the rule is immediately before providing MAiD. The person has to be given an opportunity to withdraw their request and the physician or nurse practitioner must ensure that they give express consent to receiving MAiD but there are two exceptions. The first is called the final consent waiver. You may know it as Audrey’s Amendment in honor of Audrey Parker who really catalyzed this legislative change coming into being last year. It’s also known as the assisted approved category. It is only for track one people.

So here’s what it means. If you meet the eligibility criteria for MAiD and your natural death has become reasonably foreseeable and you are at risk of losing capacity to consent to MAiD, then you can have a written arrangement between you and your provider. And what you do is you agree to the provision of MAiD on or before a specified date if you lose capacity before that date. So it’s a form of advanced request but it’s a very narrow form. It is also the case that the person must not demonstrate resistance or refusal. Although in the legislation, it specifically states that involuntary words, sounds, gestures made in response to contacts, I touch your arm and you move that does not constitute refusal or resistance. The second exception is called advanced consent. And this is in the context of failed self administration. And it applies to both tracks one and track two.

What has to happen is if you meet the eligibility criteria for MAiD, then there can be a written arrangement that the provider will be present at the time the person self administers and they will administer meds to cause the person’s death, if after self administration, the person loses decision making capacity and doesn’t die within a specified period of time. So you can be in a sense rescued from failed self administration and get MAiD even if you’re self administration doesn’t work. So that’s the procedural safeguards. Moving on, number five in our top 10 of things to know about MAiD in Canada. Can family members veto a request for MAiD? No. The answer to that is clearly no. If somebody doubts that, point them to the decision from the Nova Scotia Court of Appeal in Sorenson v. Swinemar, a case in which a wife tried to prevent her husband from accessing MAiD and the Court of Appeal was very clear in saying that a third party cannot veto a person’s request for MAiD.

Number six. What can you do if your physician or nurse practitioner says, no, you cannot have MAiD? Well, it depends on why they say that. If they say no, because they’ve found you to be ineligible, you can actually make another request for MAiD to another clinician or to the MAiD program, the MAiD navigator, different provinces and territories have different pathways to MAiD, but you are allowed to make another request. The law is that two people, two clinicians have to find you eligible, but you aren’t ruled out just because somebody finds you not to be eligible. If however they say no, because they’re a conscientious objector to me, they disagree with it on the basis of their religious beliefs or other conscientious beliefs then what you can do is request a referral or an effective transfer of care to a willing provider or a program, a MAiD navigation program. The clinician has an obligation to provide you with a referral or effective transfer of care.

If someone doubts this, point them to the provincial regulatory bodies, their policies on referral and transfer of care and to the Ontario Court of Appeal decision, Christian Medical and Dental Society versus The College of Physicians and Surgeons of Ontario. This is a case in which the Ontario College for Physicians and Surgeons policy requiring effective referral was challenged. And the Ontario Court of Appeal upheld it as absolutely the appropriate balance between clinician’s freedom of conscience and patients rights to access MAiD.

Number seven, what can you do if you’re publicly funded healthcare institution, perhaps even religious says you can’t get an assessment for or access to MAiD within its walls. Well, I would say tell them they must. In my opinion, publicly funded institutions have an obligation to allow me to be provided within their walls. That said you may face resistance. And if you have the energy to resist an institution telling you have to leave, you have to go elsewhere, I would say, find a lawyer. This has to be litigated. I think it will be litigated, but this is what you can do. First try and tell them that they must explain, that they must. And if they won’t resist if you can. Number eight, are we going down a slippery slope in Canada? Absolutely not. We start with the biggest circle here. Carter, the case of Carter v Canada Supreme Court of Canada, 2015, struck down the prohibitions on assisted dying in Canada. And it said you must be able to have access to MAiD if you grievous and irremediable medical condition causing enduring an intolerable suffering that can’t be relieved by means acceptable to you.

Then what happened is Bill C14. You see that they’re way shrunk down in 2016 was the Federal Parliament’s response to the Carter decision. And what they did was they narrowed the Carter decision. They narrowed eligibility from the Carter decision because what they did was they narrowly defined grievous and irremediable medical condition. And they included in the eligibility criteria that natural death has to have become reasonably foreseeable. So NDRF, Natural Death is Reasonably Foreseeable was an eligibility criteria, not simply the deciding factor as to which track you’re on. So it was a barrier to access as opposed to the factor that decided which procedural safeguards you had to follow. So got narrowed. Then in 2019, it went back out to the Carter circle where you see Truchon in that circle, Truchon (2019) case in Quebec, which was a challenge in part to C14, and a challenge to this notion that natural death has to have become reasonably foreseeable. And the court found that that was an unconstitutional limit on access to MAiD in Canada. It violated the charter.

So that takes us to that same circle we started with Carter. But then the federal parliament responded to the Truchon decision and gave us Bill C7. And in that that’s where you get the exclusion of mental illness that I talked about earlier. Now that exclusion is only there until 2023 at which point we will go back to Carter, to the Carter circle because that exclusion will be gone. So the reason I say there’s no slippery slope is there’s no circle that’s bigger than the Carter decision from the Supreme Court of Canada. So with back to eligibility criteria in Canada, we have not gone down a slippery slope.

It’s important to also note that the slippery slope worries are not manifesting, which is unsurprising given that MAiD has been legal in the Netherlands and Belgium for many, many years in Oregon and so on, there’s not been any slippery slope. What we find in Canada is there are slightly more men than women accessing MAiD, 94% are over the age of 65. Cancer is the medical condition satisfying the eligibility criteria and 69% of MAiD deaths. This is followed by cardiovascular, respiratory and neurological conditions. And the most common aspects of suffering that lead people to request MAiD are loss of the ability to engage in meaningful activities and loss of the ability to perform the activities of daily living.

We have official data that shows 96% of MAiD recipients receive palliative care, or it was accessible to them if needed. And we have research that’s showing for instance, there’s no difference in access to palliative care for people who received MAiD and those who didn’t. The rates of palliative care actually increased after MAiD became legal. Those who access MAiD are privileged as opposed to socially or economically vulnerable. Patients with low socioeconomic status are less likely to receive Medical Assistance in Dying. So that’s the slippery slope.

Number nine, how many people have been helped by the legalization of MAiD in Canada? Well, the total reported MAiD deaths in Canada from 2016 to 2020 is 21,589. So that’s how many people have had MAiD in Canada. That represents now 2.5% of all deaths because for 2020, the data was 7,595 people had MAiD, and that’s 2.5% of all deaths. You will see yes, that the numbers are going up year over year, but that is absolutely what you would expect when something starts as illegal and it becomes legal, and then people start to know about it. Protocols get in place, providers become available and so on. It’s quite naturally going to increase and judging by the experience in the Netherlands and Belgium, which has the closest legal framework to ours, we can well expect that we would go up to four, 4.5% before we’d start to see a leveling off.

So you have a total 21,589 people who’ve actually had a MAiD death. So they’ve been benefited by the legalization of MAiD. But I would say also there’s many, many, many more people who have benefited from legalization and that’s because they know it will be available to them if they end up wanting it. They may never need it, they may never get there, but they’ve been given comfort knowing that it would be there for them if they needed and wanted it.

All right, number 10, our final in the top 10 what’s coming down the pipe? What can you in the next months, and maybe couple of years? The first is we’re going to have new data reporting and analysis. Clinicians are going to be required to report on race or indigenous identity and disability insofar as they have that information and permission. The reason for this is to determine the presence of any inequality, including systemic inequality or disadvantage based on race, indigenous identity, disability, or other characteristics in Medical Assistance in Dying.

And I would note here that this is about finding out both, whether there’s too much. Is there disproportionately too much or disproportionately too little access? And I actually anticipate that what we’re going to find is that there’s a disproportionate impact of not being able to access MAiD when you want it, but we will wait and see what that data reveals, but it’s going to be collected now. And it wasn’t collected in the past. We also have an independent expert review going on, that panel has been asked to recommend protocols, guidance, and safeguards to apply to requests made for MAiD by persons who have a mental illness. They’re working a way, their report, which will contain conclusions and recommendations has to be provided to the ministries of health and justice no later than March 17th, 2022, so coming up. The ministers must cause the report to be tabled in parliament so there’s transparency about this within the first 15 days on which the house is sitting after the day they receive the report. So we can anticipate this in spring 2022.

Remember the mental illness exclusion will be automatically repealed in March, 2023. So this panel is about figuring out how MAiD should be administered, whether there should be other protocols or safeguards or guidance for the population that will become eligible again, because they were eligible under Carter, become eligible again in March of 2023. We also have a parliamentary review in theory going on, the criminal code MAiD provisions and their application, including, but not limited to the following, were supposed to be studied by a committee. These topics are mature minors, advanced requests, mental illness, the state of palliative care in Canada and the protection of Canadians with disabilities.

As I said, these are the topics that are to be studied by a joint house and Senate committee. The report under the legislation do no later than April, 2022, but I would note that the committee commenced its review in April, 2021, it was named. It did the bit of work and then it was stalled for the election and it still has not restarted. So I don’t know that they are going to meet their deadline. We also can anticipate public debate. In the main, I think the debate will be about these two issues, advanced requests and mental disorders as a sole underlying medical condition. So the advanced request pieces will we allow people to make a request for MAiD before they have met all of the eligibility criteria? Because right now remember we have final consent waiver. You have to be eligible, you have to meet all the eligibility criteria and your natural death has to have become reasonably foreseeable.

The question is whether we could we move that back as has been recommended by every, I think major expert panel in Canada that has made recommendations on this point that you would be able to do it after diagnosis with a serious and incurable condition, but before the onset of intolerable suffering. So we will see federally, we are going to restart this debate because we’ve been having it for years in the new year. And I would note that in Quebec, they are well into the debate. They recently had a committee issue a report which recommended this kind of expansion to make advanced requests available for a broader group than are able to access final consent waivers. The second issue is the mental disorders. Federally, the debate is not about whether this should be permitted, but rather how. Because remember this is going to happen automatically in March of 2023. And so the debate will be about which procedural safeguards, guidance protocols and so on should apply once it’s legal.

In Quebec, they’ve actually taken a bit of a step back. They seem to be debating whether to allow MAiD for mental disorders as a sole underlying medical condition. And indeed the committee that recently reported recommended prohibition. I don’t know that the national assembly will accept that recommendation. I hope not, but we will wait and see. And these will be the debates that we watch for in the coming months and years. The final thing coming down the pipe is litigation on forced transfers and institutional conscientious objection. This is a very real issue. People are being forced to leave institutions that they are in that may even be their home to go to another institution or an office or various other locations to get MAiD because an institution has a religious or conscientious objection to MAiD.

I believe that a publicly funded institution does not have that right and should not be doing that. But as I said earlier, I think we’re going to have to litigate on that to make it clear to them that they cannot do that. And I would note that this is real, a recent study came out that showed that 9.5% of the cases in the study were forced to transfer because of a religious affiliation of the institution. So it is a meaningful number of people and it can cause extraordinary suffering. If you think about the physical condition and the pain and suffering that can be involved in a physical transfer from one institution to another, let alone the psychological suffering that that causes. So that’s my top 10. For more information, I try to keep this up to date with legislation and cases and everything is going on. Reports you can go to eol.law.dal.ca. But at this point it is you your turn to ask questions and we can make sure that we get even more than 10 things you should know about MAiD into the conversation.

Thank you so much. There has been so much engagement in the Q&A box. So we have a bunch of questions to ask. So this is great. Why don’t we start with, how long does it take to set an end of life date? Approximately once the initial paperwork has been submitted and the process has started.

Oh you can… some people have MAiD the same day. That’s an extreme circumstance. Was this topic with… the question in relation to final consent waivers or just generally MAiD?

I think it was generally MAiD. Yeah. It is in general.

It can go from same day in extraordinary circumstances to months because somebody may start a conversation with their family doc and say, I’m not wanting this yet, but let’s start down this path. In which case the paperwork is not the issue there shouldn’t be delays. And I would note that what used to happen before C7, when we had C14, these are the names of the bills that changed the law. There was a 10 day waiting period between the request and the provision, that is gone. If you are track one, there is no waiting period. So it can be quick. If you are track two, there is a 90 day period. So it would take at least 90 days if your natural death is not yet recently foreseeable.

Yeah. And actually someone had asked if the 90 days was a new addition. So the answer is yes, because with Bill C7 I guess?

Yeah. So it’s a new addition because there’s a new group that they have allowed access to MAiD. As I said, we have grievance and remediable under Carter, C14 shrinks it, that’s 10 days. C7 expands it closer to Carter so there’s a new group that weren’t eligible under C14, who are now eligible. That group has to take no 90 days, 90 clear days for their assessment.

Thank you. Yeah. That’s super clear. Can someone come here from another country? So someone who’s not eligible for healthcare in Canada and pay out of pocket for it? Like if they were visiting for example?

Nope. Nope. You have to be eligible for government funded health services. Actually eligible or eligible but for the waiting period. So if you have actually moved to Canada and you would be eligible in three months time, because that’s how our health system works then you could. But if you come and you’re just visiting, you are not immigrating you’re not becoming a permanent resident or anything like that. No, you cannot come to access MAiD no matter, even if you pay for it yourself.

Thank you. And I believe Switzerland is the only country that allows for that.

Correct.

Okay. Someone else was asking if life insurance is still payable, if someone dies by MAiD or if it’s considered the same as suicide?

Yeah. That’s a great question and it was something about which I was a little concerned a number of years ago than when this was first coming in. But the life insurance companies really stepped up and their association very early on. I remember when we were holding hearings with the provincial territorial expert advisory group. They stood up and they said, no, life insurance will apply so long as you follow the law. And so if you follow the law, it won’t be voided by you having MAiD. Quick note though, right? Some life insurance does have an exclusion of, you have to have bought it within more than two years. So if you have suicide and you only bought it three weeks ago, you’re not eligible. That’s because there’s a difference in information, right? There’s an informational imbalance. If you actually know that your life is going to end because you know you were going to die by suicide. So the bottom line is you can’t buy life insurance knowing that you plan to have MAiD not disclose that and then have a payout.

But the normal circumstances, I have life insurance through my job. I’ve had it because I’ve been here forever. If I have MAiD it won’t be void. And they’re clear on that. You follow the law, your life insurance is going to payout.

Thank you. Someone else was asking, can you please define capacity? Are you talking about mental capacity, physical capacity and who defines what that is and looks like.

Right, so decision making capacity is mental. That is determined by the clinicians. They have to be confident that the person has capacity. I would note that there is in Canadian law, well established presumption of capacity. So you can’t just for instance, assume, oh, somebody has a mental illness therefore they don’t have decision making capacity that doesn’t work under Canadian law. But what happens is, the two clinicians have to be of the opinion that the person has the capacity to make the decision, and it’s decision specific and time specific. It’s not, do you have the capacity to decide whether to have knee replacement in this circumstance? It’s do you have the capacity to decide whether to have MAiD. Or I would know it’s also, if you’re having a final consent waiver, the capacity you need to have is to make the final consent waiver. So you have to understand projection out into the future, that kind of thing.

Now it gets a little confusing because there’s also the word capability in the legislation. When I said there’s, you be in an advanced state of irreversible declining capability that can be physical or mental. So it could be that I can no longer walk. I used to be able to walk. That’s an advanced state of irreversible decline capability. But it might also be that I used to speak four languages and I now only speak the language I learned when I was two. So capability in the legislation is physical or mental, decision making capacity mental.

Okay. Thank you so much for clarifying that. Can the written agreement or arrangement, so the waiver of final consent be between anyone other than the patient and the provider?

Absolutely not. No substitute decision makers can enter into this and it can’t be in agreement with one provider then that person’s not available. So another person comes along to provide MAiD, doesn’t work. It’s the specific person who provides MAiD.

Next up is, let’s see here. Someone was asking about numbers, I guess the number of people in track two. So have there been any numbers coming in regarding the number of folk in track two who have requested MAiD since the new legislation?

Right. No, we don’t have that data yet because it gets… We just have last year’s data.

Yeah. That makes sense. And I imagine that within the next two years, more of that information is going to start coming out.

Absolutely. Plus I would note that the community of MAiD assessors and providers has been very responsible in their approach to research in my view. They’ve taken the view that they are not just about being assessors and providers, but they are also beautifully situated to conduct a lot of research so that we can know what’s going on and how we can do it better. And so the members of CAMAP it’s called the Canadian Association of MAiD Assessors and Providers are doing a lot of research and you can go to their website and you can see lists of their research. And that is another way. So we get the data and the information from the federal government, or if you’re in Quebec from the Quebec government, because it’s a separate system. But there’s also a lot of research going on now around MAiD in Canada. Not entirely by the assessors and providers, lots of other people are doing it too, but there’s a lot happening. So we’re getting a lot of information about what’s going on and how we can do better.

And one lovely thing is we’re in a fact we’re paying it forward. We learned a lot from the Netherlands and Belgium and Oregon and Washington state. And now a lot of people are learning from us in Australia and New Zealand and many other countries.

Yeah, no, absolutely. Someone was curious about MAiD and how it’s changed during the pandemic. So how has MAiD access changed during the pandemic? Have you seen it go up or stayed the same?

So one of the things that happened early days was, people had to pivot to virtual care and that applied in the context of MAiD. And so we had to get it clear that you could have assessments done virtually. And that became clear. That is a provincial matter. And that gives me the opportunity to make a point about the legal system in Canada and the healthcare system in Canada, which is the criminal law is dealt with federally. That’s why the MAiD law is federal it’s in the criminal code, but health is administered provincially. So things like, can you do virtual assessments? That’s happening at a provincial territorial level has nothing to do with the federal government. That’s why you have to watch both areas, both jurisdictions to figure out what are the rules here? So we did see a pivot to virtual, which was really good.

One thing that was helpful in the change to the law in C7 was going from two witnesses to one, which helpful in the context of MAiD and COVID because getting two people in was even harder than one. Here, I want to just put a quick plug for Dying with Dignity Canada because this organization early days recognized that having witnesses was going to be finding witnesses, getting them was going to be challenging for many people and put in place a system to get witnesses, to get them trained and get them available and be able to have people call and say, I need somebody, and then you could [inaudible 00:39:25]. So I mean, Canadians owe a great debt to Dying with Dignity Canada actually for picking up on that issue and making witnesses available. So tangent back to COVID, the numbers… I’ve read in places the demand was going up, but I haven’t seen any official data.

Oh, I’m not sure I’m the one who’s frozen.

That that was COVID or not, right. Our numbers are going up. You don’t look frozen to me. So am I?

Okay. I think you’re back then.

Okay.

Okay. Perfect. Sorry, could you repeat that then, please?

Yeah. Our total numbers are going up, which is what you would expect. So that doesn’t show you that COVID has made it go up. We can’t draw that, but also we can’t… How would you know whether it didn’t go up as much as it would’ve because of COVID. I’m not sure. So more what we have, I think are reflections from people that there’s challenges in access to clinicians for MAiD and that can have an impact, whether… Does it just slow it down or does it mean people actually don’t even access it? I know for instance, in Nova Scotia, they had to actually put a pause on taking new MAiD requests because it did not have the human resources to meet those. Now, how much was that tied into COVID? I don’t know. A good outcome virtual assessments, hopefully we will keep those post COVID. It’s one of those things about COVID is we’ve learned, we could do things that we didn’t think we could do before that actually serve a lot of people’s interests, including, and especially people who have problems with accessing services.

Yeah. And even in terms of witnessing, like you were talking about many provinces have allowed for virtual witnessing, which has been wonderful, but then there are the provinces that haven’t allowed for virtual witnessing, which has definitely been really challenging for folks who need witnesses and aren’t able to have anyone come in during this time.

One of the good things is if we all share our practices, then those provinces that are being resistant can help people come to them saying, look, this is not posing a threat to anybody. This is about access while still being able to protect people. So look at all these other places that have done it, you should do it too.

Yeah, absolutely. And even being able to reach folks that we haven’t been able to reach before throughout Ontario, for example, being able to actually do that virtual with people who might live more remotely, where we don’t have volunteers in the area.

Absolutely.

Yeah. Yeah.

And it’s really important to note with volunteers they are witnessing that the person is making a request. They’re not playing any part in the assessment. So it’s about identification and signing or having someone sign. So people need to recognize that when they… if they feel any discomfort at the thought of virtual, they need to understand what the role is and the role can absolutely be played virtually.

Yeah. So you touched on this, but just for some clarification, someone had asked, could a family member stop a MAiD procedure where the waiver of final consent has been signed and the applicant has lost capacity?

No. The only way they could is if they said this final consent waiver has these conditions as when it should be provided and you’re not meeting those conditions. So, pick a random example to make the point. Say that I have a final consent waiver and I say, I want it when I can no longer recognize my children. And I’m trying to, that’s not a good example actually. I’m trying to think of one where the condition wouldn’t be met. An objectively accessible condition is not met. I want MAiD on or before this date, if I’ve lost capacity, but after somebody’s birthday. And the clinician is just wrong about when the birthday is. Well, then the family member could say, you’re wrong about when the birthday is, it’s not till later. So this objectively accessible condition has not been met in which case, then they could intervene. They can’t intervene because they disagree. They absolutely cannot intervene because they disagree with MAiD and they can’t intervene because they disagree with the clinician’s assessments.

This is an agreement between the provider and the patient and the clinician has the responsibility to make the determination of when the conditions for the operation of the agreement have been met and to then proceed.

Okay, right. Where can MAiD take place? Can it take place at home, in hospice? Where is it typically taking place as well?

It can take place anywhere. There are no restrictions in the law about where it could happen. It can be at home, it can be in a hospice. It can be in a hospital. It can be in a retirement home. It can be out by the lake on the dock. It does happen in people’s garden and so on. It happens all over the place. Sometimes it has to happen in a clinician’s office, medical office, because an institution is refusing to allow a person to have access to MAiD within the walls. So there aren’t restrictions in the law as to where it can happen. It’s happening, I would say mostly, I can’t remember the exact numbers, but hospital and home would be very, very common. And I do want to flag, it’s happening in hospices and on palliative care units, because it’s really important for people to know that not all palliative care clinicians are opposed to MAiD, not all units won’t allow it, not all hospitalists won’t allow it.

And what frequent, I would say happens, I can’t say frequent, because I don’t have the data for that. But what has happened is people experience a forced transfer one time and then we are never doing that again. And so we’re start… I think we are seeing more and more hospices and palliative care units allow MAiD. And I think that that’s an inevitable trajectory, so that in 10 years we’re going to look back and be like what? You used to not do it? So it can be anywhere.

And I think that is a misconception or a lot of folks think that it’s never the case and it doesn’t happen at all. So thank you for clearing that up.

I they get told that and it’s not true.

Right. Right. Interesting. Yeah. That’s fascinating. Someone’s curious about if MAiD, I guess perhaps in an Ontario context or if you know about any other provinces as well, if it’s stated on the death notice and what is the cause of death if you have MAiD.

So it is important to distinguish between cause of death and let me think nature and cause. And so it’s uneven across the country in that some places have MAiD as the cause of death versus the manner of death. Most places I think are doing the right thing now, which is what I think you should do is the manner of death should be MAiD. I don’t think we should hide MAiD because I think we need to know the numbers and also there’s no reason to hide it. But the underlying cause should be the condition that precipitated the request for MAiD. And here’s why, picture if we put MAiD as the underlying cause our cancer rates are going to drop precipitously.

We make our health resource distribution decisions based on how common are certain diseases and where do we need to put our dollars in order to reduce preventable death. So you would have your cancer rates drop, you’d make changes to your allocation of resources, to cancer research and cancer services. And that would be totally wrong, right? If cancer disappeared and you just have MAiD. Or if you call it suicide, your suicide rates are going to go up. Well, that’s completely misleading because we want to prevent a certain group of suicides but in fact, we want to allow some assisted dying. We have said that as a society, and if you class it a suicide, you gets all muddied in with the suicide prevention efforts and all that kind of thing. So that’s why I would say do them separately. This again is provincial territorial. So that’s why it’s different across the country. The other thing I would notice that a medical certificate of death is different piece of paper than what people may have access to as a certificate, a death certificate for doing things like getting will probated, that kind of thing.

And it’s important to know that because some people are quite concerned about the privacy aspect. They don’t want people to know that they died as a result of MAiD. And so be aware that those are different documents for different purposes. And the medical certificate of death is so that we can know what’s going on and we can make resource allocations about services and research and safety and all kinds of things going on. There’s good paper out. I could send you the link or you may link it on. That was about what exactly is done in every province in the country. What’s put on the medical certificate of death.

Yeah. If you have that, that would be fantastic. Just send that over to us. And then we can send that out to everyone at the end when we send out the final email at the end of the series. So that would be fantastic. Thank you so much. Yeah. Because I know a lot of folks are concerned about that privacy piece that you brought up, whether or not other folks can see that outside of the medical institution, I guess.

Yeah.

Someone wants to know about the actual process. So the procedure. Can Jocelyn please walk us through the details of the actual procedure, including a timeline from start to finish? If you’re…

I don’t know if you have a webinar that has described that from a clinician that you can point them to. So I first just suggest you do that because that will be the most accurate. But what I can tell you is the lay of the land, the layperson summary of it. So you’ve gone through the whole process to be approved and to be ready and you’ve got your date and the clinician arrives. So the clinician has to believe, reassure themselves that you still have capacity, decision making capacity and you have to give this express consent immediately prior to the provision. So those are the almost legal aspects of it. Those will be part of the conversation between the clinician and the patient. On the technical clinical side, you have three different meds that are given. So you have an IV inserted into both arms and that is for the delivery of the meds.

The reason for two is in case one fails so that you have available… you have the veins available, right, to get drugs in. So the first one is relaxes the patient. And then the second one, the final one is paralytic. So it stops the heart. Somebody may want to just, oh, you don’t have the chat function going, but a clinician might remind me what the middle drug, what exactly the middle drug does. Usually people I have heard are dead before the third drug even goes in. So basically what it looks like is the person is there, they give their final express consent. The first drug goes in, they get dozy they fall asleep, they stop breathing and they die. So it’s three drugs. It’s very, very peaceful. And in terms of time, not a long time, some people… Because some people are incredibly ill and frail before. So it can be a matter of minutes and others, it takes longer than that. This is one of the reasons why some people and some clinicians prefer provider administered to self administered, because self administered can take much longer.

And that can be very difficult for the person, but also for the people who are with the person, their family members, their loved ones. MAiD provider administered is much shorter.

Okay. Yeah. that’s really good to know. Thank you.

Sam I can’t just jump in. The second drug I think you’re referring to is propofol, Jocelyn. It puts you in a very, very deep sleep, it’s used in surgeries all the time. So you can imagine how asleep you are for a surgery, that’s the same medication used in MAiD as well.

Right. There we go. Okay. So the first relaxes second puts you into deep sleep and the third stops your heart.

Thanks Kelsey. That’s great.

Thank you.

Still so much engagement. Thank you everyone so much. We also have so many fantastic comments that I’ll read out at the end. But so rules around organ donation. What are the rules around organ donation after receiving MAiD? And do you know if it’s the same province to province?

Ooh, the final bit of that is… It is permissible. It is done. It has been done and it will increase no doubt because I think a lot of people will come to know that it can be done and want to be able to give that final gift where possible. So whether there would be any differences, there would be differences at the level of practice because different programs would… They run locally even. But it’s going to look very similar I would think. Certainly clinically it’s going to look the same. So bottom line is you can do it, ask your clinician for details on how it’s done. How it actually manifests. It can mean that you have to be in hospital as opposed to at home, because then they’re going to obviously get the organs and they want them to be as healthy as possible, organs are tissues, healthy as possible. You might want to pop, we’re talking about all these things to put links in.

There’s a documentary about a Halifax woman who I believe was the first person to have MAiD and do organ donation. And there’s a good documentary out on that, which people might be interested in seeing, what does it look like to be the person as opposed to reading some protocol on it.

Yeah. That’s really fascinating. And we also did have a webinar about this back in November. So for anyone who’s interested, maybe Kelsey or Nicole, you could link that in the chat or folks can just check out our past webinars page. But yeah, we do have some info, but that’s really interesting. And I think our perspective of the person who is actually doing that through that documentary would be amazing to check out. So we can also find that and include that later on for folks who are interested. So we have time for a few more before we’ll wrap it up. So a bunch of people were talking about dementia and Alzheimer’s. Specifically dementia and Alzheimer’s are they considered to be neurological diseases, mental illness, people are unclear about what a category either of those fall into.

Right. So they are considered to be neurological for the purposes of MAiD. They are not captured by the exclusion of mental illness. It’s true they are to be found in the DSM5, which is the Bible of diagnoses for mental disorders. But it was asked and made clear during the legislative process that they are not captured by the mental illness exclusion in part. People would be clear, that’s not mental illness. If anything, if it’s mental disorder, maybe because it’s in the DSM. But it’s very clear dementia, Alzheimer’s as a form of dementia not captured by the exclusion for mental illness. I want a flag that actually people with dementia can currently, and even under C14 could have access to MAiD. Because what can happen is you can actually reach the eligibility criteria, still maintaining decision making capacity.

And so what CAMAP did, The Canadian Association of MAiD Assessors and Providers was they developed a protocol for this and it’s described as the 10 minutes to midnight protocol. Because what you do is you have the clinician follow the person with Alzheimer’s with dementia, watching the declining capacity, the inevitable decline in decision making capacity, watching the suffering, watching all the declining capability and so on. And at a certain point you would say your natural death is reasonably foreseeable. Your suffering is intolerable. You are in an advanced state of decline in capability and you obviously have a serious incurable condition. But people want to go as long as they can, right? Because that’s the heartbreak of Alzheimer’s is people actually want to live longer than would be permitted by them having to reach the eligibility criteria. So they have to go earlier than they want.

So basically you’re trying to let them have as much life as long as life as possible before they’re going to lose capacity. So at 10 minutes to midnight, the clinician is saying, I’m not sure that next week you’re going to have capacity anymore at all. So we got to go now or you won’t have capacity. You could do with 10 minutes to midnight, you could be eligible and you could have it. But what people are advocating for now in the context of broadening advance requests is to say, wait, if I could live longer, if I didn’t have to make sure I got in before midnight and what I could do is I could say, when I get my diagnosis, I’m at a declining capability. I’m not yet experiencing enduring and intolerable suffering, but that’s when I do effectively… a version of a final consent waiver.

And I say, look, to my clinician, I’m going to set, I’m going to say six months out from now as the date for MAiD. And if I’ve lost capacity in that time, give me MAiD on or before that date. That’s what people are advocating for now in terms of the change to the law, because remember track one people can’t have… only track one people can have the final consent waiver right now. And people want the comfort of it, of knowing they’re going to get it sooner than track one allows. So that’s the state of art for dementia, Alzheimer’s right now. People can be eligible, but there will be a lot of advocacy to try and make it easier for people to have the comfort of an advanced request in the context of dementia.

Thank you. That covers a lot of questions that folks are asking. So that’s very helpful. Excuse me. So I think we have time for one more question, maybe two but one for sure. Someone saying, if your GP tells you that they don’t support the MAiD program for personal reason, is there an obligation or requirement to tell a patient that they can seek out another doctor? Or should they be giving the patient a phone number to call for more information?

Oh, they have to do more than either of those things. They have to make an effective referral or a transfer of care. They have an obligation, a professional obligation to make sure that that patient gets to someone who is willing to do the assessment. Doesn’t necessarily mean they’re going to get MAiD because maybe they’re not eligible, but they have to get them to someone who can provide them with all of the information, who can do an assessment or arrange an assessment and who would be willing… somebody else who would be willing to provide if the person in fact is eligible and in fact wants it. No, you cannot be abandoned by your clinician. The thing to note though is that some physicians, some nurse practitioners may not honor this, may not know it. And provinces and territories have established programs that you can self-refer. Because sometimes also what happens is you say, it’s not that my doc won’t do the referral, it’s that I don’t want to tell my doc I’m doing this.

I know there are a conscientious objector. I don’t want to go through that judgment. Can I get there somewhere by myself? And absolutely. And so what you do is you Google your province and Medical Assistance in Dying and you find the program. And sometimes it’s provincial like Nova Scotia. It’s just there’s one provincial program. Ontario has obviously much bigger regions as does BC and so on. But you should be able to find the program that administers and helps navigate so that you can get there. So you don’t have to go to your clinician, you should be able to get access in another direction. Plus I would, again, plug Dying with Dignity Canada, call Dying with Dignity Canada they will help you figure out how to get to the place you need to get to.

But that does not let doctors and nurse practitioners off the hook. They still, they have that obligation to make an effective referral or an effective transfer of care for a patient to… Because there’s people who can’t navigate that. I say happily, oh, Google and call these people. Well, you’re an 85 year old woman immobile in a hospital, English is your second language, you don’t have a tablet, how are you going to do that? So that’s why clinicians actually have that obligation is to make sure that everybody can gain access to their rights, to somebody who will help inform them in a nonjudgmental way and enable them to gain access if they are eligible and want it.

Yeah. That’s all. So many great points there and I think what we’ve heard is, a lot of folks don’t feel comfortable asking their family doctor or anyone that they know. Also if a community feels small people, don’t always want folks that they know to know that they’re making the request. So yeah, that’s all so important.

And these great programs have developed across the country to help patients like that, navigate the system and gain access.

Yeah. Okay. I think, we’re very close to time. So I think what I’ll do is I’m just going to read some of the comments out that people have said. Absolutely fabulous presenter, clear, articulate, logical, thorough, so appreciated. Thank you so much for your time. Someone said they love the color of your walls. So there you go. Outstanding presentation, extremely well informed, great examples. Thank you so much. Fabulous data, fantastic speaker. This webinar has been excellent. Many thanks to Jocelyn for her clear and decisive language and approach extremely accessible. This has been an amazing conference, thank you for all that you do.

So yeah, people have really, really loved this so much. Fantastic information. Thank you so, so much for being here. Like I said, an amazing turnout, so much engagement and I learned a lot, cleared up a lot of things and we’re just so grateful to have had you.

Oh, it’s my pleasure always to participate in something like this and thank you for including me.

Yes, no, absolutely. It’s definitely our pleasure. So thanks everyone for attending. And as mentioned, we will include some of those resources for you at the end of the month, when we send out a follow-up email to everyone. And I hope that you all have a really nice rest of your day, take care.