With Dr. Vanessa Cardy MD & Shelley Birenbaum, CBA EOLWG. Hosted by Julia Tétrault-Provencher. Update from the CBA End of Life Working Group on the on-going work of finalizing Canada's MAiD legislation, and insight into the application of said legislation from a practicing physician's point of view.
In this episode of the Every Lawyer, Julia takes a look at the current state of Canada’s Medical Assistance in Dying legislation as well as its practical application with Dr. Vanessa Cardy, who is a family doctor and palliative care physician working in northern Quebec, and Shelley Birenbaum from the CBA's End Of Life Working Group.
Also includes a basic synopsis of the criteria and safeguards set out in Canada's MAiD legislation and a firsthand account of the procedure.
Links:
Final Report of the Expert Panel on MAiD and Mental Illness - Canada.ca
Second Annual Report on Medical Assistance in Dying in Canada 2020 - Canada.ca
Dying With Dignity Canada | It's your life. It's your choice.
CAMAP – Canadian Association of MAID Assessors and Providers (camapcanada.ca)
This is Assisted Dying - Dr. Stefanie Green
End-of-Life Law and Policy in Canada | End-of-Life Law and Policy in Canada (dal.ca)
ACE | Welcome to ACE (advocacycentreelderly.org)
Home - ACP in Canada | PPS au Canada (advancecareplanning.ca)
David Roberge at Parliamentary Committee, May 25th, 2022:
Evidence - AMAD (44-1) - No. 8 - Parliament of Canada
Let's Talk About MAiD & End of Life with Dr. Vanessa Cardy MD & Shelley Birenbaum
[Start of recorded material 00:00:00]
Shelley Birenbaum: People don't like to talk about death. My thought about this is people think if they talk about it they’ll make it happen.
Voiceover: This is The Every Lawyer, presented by the Canadian Bar Association.
Shelley Birenbaum: But if you have an on-going relationship with a client, and that’s going further – I mean, if they're going to come to me because they’re suing somebody. I’m not going to say, oh, by the way, did you think about end of life? But any area that touches upon future planning I think is an entre for you to talk about it. I wouldn’t just talk about it. I mean, somebody talked to me about setting up a clinic. I’m not going to necessarily raise it unless I’m chit-chatting with them. And then because I’m seized of the matter I always talk about it.
But for your average lawyer I think there has to be a connector. I mean, I think it has to relate to some area of your practice. And you just have to get over being scared of talking about death. And, look, somebody comes to do a will. What are you talking about? Well, when I die. So we are used to this. When I die this person will be my executor. When I die my daughter will get this.
You know? People who are concerned about children who are disabled or who may need taking care of. So I think you wait for the client to come to you but if there’s an opportunity and you are talking about it, you can also engage in the discussion. And make it easy and comfortable for them.
Interviewer: In this episode of The Every Lawyer, we take a look at the current state of Canada’s Medical Assistance in Dying legislation, as well as its practical application with Dr Vanessa Cardy, who is a palliative care physician working in Northern Quebec. Welcome, Vanessa.
Dr Vanessa Cardy: Thank you so much for having me. It’s a great opportunity and a real privilege to be here.
Interviewer: And also we are with Shelley Birenbaum from the CBA’s end of life working group. Shelley has been a health lawyer with the Ontario bar for over 25 years. She specializes in the legal and ethical aspects of assisted dying. Welcome, Shelley.
Shelley Birenbaum: Thank you.
Interviewer: We had the pleasure of speaking to you during a first podcast in June 2021 where we discussed Bill C7 to amend provisions of the criminal code in relation to medical assistance in dying, which I will – we will call it MAiD today.
Dr Cardy, you mentioned prior to this recording that to date you’ve had direct experience with one MAiD case. Would you mind sharing some of that experience with us?
Dr Vanessa Cardy: I did indeed get involved with one particular case of MAiD. It didn’t take place in the territory where I currently work now; it took place somewhere else in Quebec. And I was asked to be the second physician. I was asked to be the verifying physician in terms of checking that the patient did really want this, going through the criteria to make sure that they did meet the criteria for MAiD and that they were in fact eligible. And then I was asked to be there actually when MAiD was performed. And it was quite an honour to be there because this is obviously a very intensely personal moment for this family.
And it was very nerve-wracking – I do have to be honest. I think it was nerve-wracking for everyone involved, because both of the physicians who were involved in this particular case – me and the other physician – this is the first time that we were doing this. And the nurses as well. So everyone, it was new.
But everyone was really trying so hard to make sure that they did it hard to make sure that they did it properly. And really one of the benefits, at least of the Quebec legislation at the time, was that it was laid out very clearly and everything in the legislation was done to sort of support the healthcare team who were doing this and they really took note of the fact that this could be challenging and is challenging for the staff involved.
Part of the original Quebec legislation was that they mandated a support group be enacted to support the people who were actually providing medical aid in dying. And I thought that this was very forward thinking of the legislators behind this to really recognize that impact. They thought about this before the first case of MAiD had ever even taken place in Quebec.
It was a deeply moving experience, as I mentioned. The patient was very alert; very lucid. They were surrounded by their family. And the family were all there to sort of witness these last moments. We prepared everything. We kept the medications and everything to the side. Then we informed the patient that it was time. And we asked them if they still wanted to go through with this and they did. And then they said their last goodbyes to their families.
The patient really was ready, though, in this case. And you have to be for medical aid in dying. If there’s any hesitancy, if there’s any concern, then this isn’t going to go through.
And the patient lay there and within a few minutes of the medication being given the patient had died. The family was able to be with them. The family was able to talk to the patient in a lucid fashion right up into the last moment, which is really so key because sometimes the last few days of a patient’s life can be full of confusion, can be full of difficult symptoms that the patient is experiencing. So the patient was unwell, obviously, and was dying, but was still lucid enough to have clear and meaningful conversations with their family.
It is an experience I will never forget. And, again, I was truly honoured to be asked to be part of this whole process.
Interviewer: So, Shelley, could you tell us briefly about the ongoing work of the CBA end of life working group? And notably the recent presentation before the parliament. And then bring us up to date about what progress actually has been done in the past year.
Shelley Birenbaum: Sure. Just to go back, the end of life working group is a group of the CBA and we were established in 2014. So it’s almost a decade that we’ve been working together. We comprise a cross-section of members from diverse areas of expertise, including health, constitutional and human rights, wills and estates, elder law and criminal justice.
So over the time during those years we’ve developed five resolutions, and those represent the policy of the CBA. And on behalf of the CBA and in accordance with the policy positions, we’ve made submissions to government and appeared before the senate, house of comments and parliamentary committees.
So in terms of your question what have we been doing over the past year, the parliamentary committee was struck and they’re looking at five issues and three of those are a particular concern to us. So what we did is we made in-depth submissions to the parliamentary committee established under Bill C-7, and that was on the issue of advance requests, mature miners, and those who have mental illness as a sole underlying conditions. So we went further than our resolutions and we tried to tease out a more in-depth submission for the parliamentary committee.
We were then invited by the parliamentary committee to talk about mental illness in MAiD and David Roberge of our group specifically appeared before the committee in May 2022.
Interviewer: Mr Roberge for five minutes.
David Roberge: Good afternoon, chairs, and honourable members of the committee. My name is David Roberge and I am a member of the end of life working group of the Canadian Bar Association. On behalf of the CBA, thank you for the opportunity to address this committee.
The CBA is a national organization which covers 36,000 jurists across the country. Our working group on the end of life as members who represent various areas of expertise including constitutional law, human rights law and more. The Canadian Bar Association has studied the law around end of life and has taken a pan-Canadian approach to this subject which would be inconformity with the ruling of the Supreme Court [in carter? 00:08:01].
Dying is complex and raises important issues and diverse views. This is perhaps even more so in cases of mental illness the CBA recognizes the importance of appropriate healthcare and social support for people living with mental illness. Meanwhile, we must realize that the suffering of these individuals is no less real than those of individuals with mental – with physical illness. As such, the framework should recognize the right of persons with mental illness to make their own healthcare decisions, including MAiD, in a manner that balances autonomy and appropriate safeguards.
In a nutshell, the CBA’s position regarding the issue of MAiD and mental illness as the sole underlying medical condition is the following. Firstly, parliament should authorize MAiD in some cases of mental illness pursuant to a patient-centric approach and provided appropriate safeguards are in place.
Second parliament should make sure that additional protections should bring in the expert opinion and should make sure that with informed consent that a patient should not have to endure prolonged suffering.
Ensure that MAiD in cases of mental illness aligns with current best practices in mental healthcare. While some issues pertaining to MAiD and mental illness would be more appropriately addressed by medical experts, the CBA wishes to highlight key considerations on the topic of appropriate safeguards from a legal perspective.
With respect to the scope of the law parliament has to define the scope of MAiD with respect to the protocols and measures that will be enforced. With respect to the expertise of the assessor given the inherent complexity of the subject parliament may want to specify that one of the assessors or evaluators should be a psychiatrist. There would have to be access to these specialists and in a short order so that suffering is not prolonged.
Currently for situation where natural death is not foreseeable, at least 90 days must elapse between the initial request and the administration of MAiD. An appropriate period is required to enable MAiD assessor to conduct a full review of the patient’s circumstances. Parliament must be mindful of the risk of arbitrariness in setting time limits irrespective of the nature of the mental disorder.
With respect to informed consent, the consent we want to see is something where someone has been offered appropriate therapeutics. In order to strengthen the criteria for informed consent, we feel that we should be mindful of the standards in provinces and in professional associations.
Of irremediable medical conditions, the views of medical experts on what is considered an irremediable mental illness may vary. Parliament should thus align with best practices in mental healthcare. As a reminder, the Supreme Court of Canada and Carter specify that irremediable does not require individuals to undertake treatments that are not acceptable to them.
On behalf of the CBA, let me thank you once again for inviting us today, and I welcome questions you may have.
Interviewer 2: Thank you, Mr Roberge and to –
Shelley Birenbaum: So that’s what we’ve been up to.
Interviewer: And can you tell us where do we stand now regarding the eligibility of when mental illness is the sole underlying medical condition? So what were the results, I would say.
Shelley Birenbaum: So right now, people who have mental illness as a sole underlying condition are not eligible for MAiD. Bill C-7 explicitly excluded them until March 17, 2023. What parliament did or what was required was they established an independent expert committee that was to look at this whole field. And there was a quite – I think it was 300-page report that the expert committee issued. It was an excellent report.
That committee found that the existing legislative regime was adequate to protect people from mental illness if they were allowed access as a sole underlying condition to MAiD. But they made 19 recommendations that would bolster the safeguards. They don’t require a change in the criminal code. But they are recommendations such as enhancing standards by regulatory colleges and doing other kinds of things to bolster capacity assessments et cetera so that it would be a protected area and we could feel comfortable doing this.
The legislation, if nothing else happens, on March 17, 2023, people with mental illness as a sole underlying condition should be eligible for MAiD, according to just looking at the legislation. To my knowledge the government has not yet reacted to the report – to that expert report. Hopefully they will adopt the conclusions and then we – hopefully they’ll be eligible by March 17th, 2023.
Interviewer: And when you talk about a bit about the safeguards, could you please explain to our listeners a bit more what are those safeguards?
Shelley Birenbaum: The first save card for accessing MAiD, and even if mental illness is a sole underlying condition is passed or is allowed in March 2023, there’s strict eligibility criteria. Not just anybody can access MAiD. And that’s the first safeguard. And let me just tell you what those are.
The person must request MAiD voluntarily. And the two assessors must be very convinced that they are acting in a voluntary capacity. I think assessors do this through meeting with the individual by themselves, without family, so that they can really hear if there’s any kind of hesitation or if there’s any kind of compulsion.
In order to access MAiD you have to be 18 years or older. You have to have the capacity to make healthcare decisions. You have to understand the information that’s relevant to making that decision and know the consequences of making that decision. So that’s a pretty high bar. You’ve got to understand what the scenario is.
Then you have to provide informed consent. That means you need to know the risks, the benefits, what could happen. You need to know what other treatments are available. So there would be a prolonged discussion with the individual as to what they could do in addition to MAiD. There must be a discussion of palliative care and all sorts of other treatments.
In order to access MAiD you have to be eligible for publicly funded healthcare. And importantly you have to have been diagnosed with a grievous and irremediable medical condition. That means it must be a serious and incurable illness, disease or disability – number one. Number two: you have to be in an advanced state of irreversible decline in capability. And third: you have to be suffering intolerably, either physically or psychologically. And that is a subjective standard. It is according to the person themselves. The physician, or the assessor, which can also be a nurse practitioner, has to be convinced that you are suffering – that you are really experienced suffering according to your own feelings about it.
Those are the eligibility criteria. But the safeguards that sort of are – even buttress the fact that this is not an easy thing to achieve is that the request must be in writing. And you can only make the request after you’ve been diagnosed with the illness. You can’t say, oh, if ever I get this I want to be able to…; you actually have to have the diagnosis.
The request must be witnessed by an independent person. Two practitioners who are independent of each other must confirm that all of those eligibility criteria that I mentioned are met. The patient or the person must be aware of all treatment options, including palliative care, before they provide informed consent. The practitioner must confirm that their request has been made freely without coercion. And then there’s a 10-day reflection period between when you make the request and the actual administration of MAiD. It can be truncated if you fear that there’s going to be a loss of capacity or there’s other reasons, but in general there’s a 10-day waiting period. And then just before MAiD is administered, you are to confirm your consent at that time.
If – now that we have Bill C-7 – so what’s different from last year is that – we changed the criteria. Bill C-7 changed it so that now you can have MAiD whether or not the grievous illness is reasonably foreseeable. If it is not reasonably foreseeable that you are going to die imminently there’s going to be another track – an additional safeguards. There has to be a 90-day reflection period. You have to be convinced as an assessor that the person has seriously considered all of the treatment options. And if the two assessors – one of them must be or must consult with somebody who’s an expert in your particular illness. So those are the kinds of safeguards that exist.
The kinds of safeguards that the expert panel recommended were things like college developing extra standards, enhanced capacity assessment tools, looking at whether somebody is suicidal as opposed to a request for MAiD. So, those 19 recommendations, and we don't know where the government will stand on them so it’s not necessary for me to go through them. But any of the listeners should know that the final report is out. I believe it came out in May 2022. It’s on the internet. It’s accessible and it’s a good read.
Interviewer: Yeah. So our listeners should go ahead and read that. 300 pages, right? So –
Shelley Birenbaum: In your spare time, just read the 300 pages.
Interviewer: Exactly.
Shelley Birenbaum: It has an excellent executive summary and it’s about 19 pages and it’s very good.
Interviewer: Oh that’s very good. We do love executive summaries for that. So, actually, you just – you mentioned a little bit the fact that you – the cd working group was a bit concerned that Bill C-7 did not allow for advanced requests for MAiD.
Shelley Birenbaum: Let me talk a bit about advanced requests.
Interviewer: Yeah. About our event. Exactly. That’s exactly my question.
Shelley Birenbaum: So advanced requests, even though the legislation was changed by bill C-7 to say you can take advantage of MAiD even if your death is not reasonably foreseeable, we do not now have advance requests. Even though that criteria has changed, there is no provision for advance requests.
Let me tell you what an advance request is because not everybody understands what that is. It means a request for MAiD after diagnosis of a grievous and irremediable condition, which is really a request for something in the future. It says when I lose capacity and I’m no longer able to confirm my consent for MAiD, which is a requirement now – you must consent before they will administer MAiD. The notion of advance request is I can articulate triggering conditions. If I get – let’s say I’m diagnosed with dementia and I say if I can no longer recognize my family over a prolonged period of time, if I can no longer make my wishes known to you through speaking or any other mode of communication as examples, that is the situation in which I would want medical assistance in dying.
So what that would mean is, at that point in time, I don’t want to take advantage of it yet because I can still know my family I was able to make an advance request. But the legislation does not allow for that right now. The parliamentary committee was to consider this. They were to report in April 2022 as they were on about five different areas. So we don’t know where they stand on that. But we believe you should be able to do that. If I have dementia, let’s say I Shelley Birenbaum were diagnosed with dementia, if I wait until I’m got unreasonable suffering I’m probably not going to have capacity. If I don’t have capacity I can’t get MAiD. So this is a way of looking forward and saying at the time when I’m incapable and these conditions happen, I would like to be eligible for MAiD.
So what we did from the working group, and I haven’t seen this elsewhere, is we actually tried to develop a legislative framework and a policy framework. What would this look like? What we did was we tried to see it as a matter of advanced planning like you might do in a will. You go into a lawyer’s office. You make a will; at that point you’re not dying but you’re thinking ahead. So we think that this should be similar to making a will. We think that the provisions for advanced requests should be set out in the criminal code. So they’re saying, again, across Canada. And based upon the current eligibility criteria for MAiD. So I’ve gone in detail with you explaining what they are and to the extent possible we would like the same kind of protections.
Interviewer: And the same safeguards as well?
Shelley Birenbaum: The same safeguards in general to the extent they fit. And it would only be done – you couldn’t do this. You couldn’t write an advance request, which we think should be documented. There should be prescribed forms, which means we set out what those forms should include. They would be set out either in the criminal code or a regulation to the criminal code. And they would set out the triggering events when I would want MAiD to happen. We’re proposing that it not be the current substitute decision scheme. Right now there’s a substitute decision scheme for when you lose capacity for healthcare decisions.
We think it should be separate from that and you would actually have a MAiD agent. Could be the same person as your substitute decision maker, but you would want to specifically name somebody for those purposes, and perhaps an alternate. You would fill out a specific form. You would be able to revoke it et cetera. And then there would be a backup. Something like a public guardian and trustee or public guardian. If my MAiD agent died and so you’ve still got this advanced request on file, it would be some government office that was empowered to act on behalf of the advance request. We also think there needs to be some appeal mechanisms if the MAiD agent isn’t doing their job and not honouring my advance requests et cetera.
So we actually spelled it out in some detail, and that’s what we provided to government and so that’s one of the things that we worked on.
Interviewer: Yeah. And did you also define how reasonably foreseeable would be? Like, did you define it in your proposal as well?
Shelley Birenbaum: What currently exists in the legislation, they don’t define what reasonably foreseeable is and what not reasonably foreseeable is. However, in reviewing what other people have written, there is a Canadian association of MAiD assessors and providers. It’s an incorporated entity and it’s a very good entity and it’s provided some guidance to physicians and other assessors as to how they should look at this. And what they’ve talked about is reasonably foreseeable really means reasonably predictable. This is not in the legislation. Although we did make a comment in our submissions that it should have been defined if you’re going to have two tracks of safeguards. And so what they said is the trajectory towards death is predictable from the person’s combination of known medical conditions and potential [unintelligible 00:25:22] life coming from that medical condition.
In clinical circumstances this would include considerations of your individual circumstances such as age, frailty, and it doesn’t have to be rigorously tied to a particular timeframe.
So the operative phrase, I guess: is your death reasonably predictable? That would mean your reasonable foreseeability, and if it’s not reasonably predictable then it would be not reasonably foreseeable. And that works. And that would work in the advanced request scenario.
Interviewer: Have there been any developments regarding access to MAiD for mature minors? And I’m sorry for my French accent here, but –
Shelley Birenbaum: No; there hasn’t been any development in terms of that. Again, the parliamentary committee that is to report on actually five areas has yet to report and we’re hoping that they will allow access to MAiD for mature minors. I mean, to say that at – say in Ontario that at the age of majority at 19 you are capable of consenting but not at 18 seems very arbitrary and in our view unconstitutional.
At least in Ontario, and in many of the jurisdictions across Canada, capacity is maturationally based. You understand the information necessary to make a decision and the foreseeable consequences of making or not making that decision. And we don’t look at an age and why should we for MAiD?
We may want to enhance – and this again is what the expert report for mental illness said – you may want to enhance the safeguards to make sure you really can assess capacity. Because I agree: the consequences are dire. To the best of my knowledge we don’t come back from death. And in my view it is the end. So you want to take it with all seriousness. But we do accept the fact that mature minors can make healthcare decisions and some of that is withdrawal of treatment that can lead to death. So we think it’s unconstitutional if they’re not allowed this treatment.
And MAiD is considered a healthcare treatment. So we are waiting to hear from the parliamentary committee what they’ll what they’ll do with respect to mature minors.
Interviewer: Another question I had when you mentioned, for instance, the 300 pages report from the experts and also the work you’ve done this year. So to have all those changes. And what was the process that the working group did and were marginalized communities including first nation communities consulted?
Shelley Birenbaum: So to the best of my knowledge we don’t at the CBA consult with people; the consultation is with our membership. So we have 36,000 members and we consult with our members and the sections. In terms of what the government did, to the best of my knowledge, and I’m only speaking with what they have written and looking at some of these parliamentary hearings, I think they have consulted widely. There certainly have been public hearings. There have been the opportunity to make submissions. So I don’t know that people feel they haven’t been consulted with. They may not like whether or not they were listened to et cetera but to my understanding they were consulted with. But that would be a question for government.
Interviewer: Or for Dr Cardy.
Dr Vanessa Cardy: I’m a family doctor with a special interest in palliative care, and when it became clear that Quebec was going to be the first province to pass legislation regarding MAiD, we knew that every publicly funded institution in Quebec needed to prepare the protocols and procedures. When this was first brought up in the Cree First Nation where I work in Northern Quebec, some residents had questions about whether the law applied to the First Nations, and perhaps time should be taken to pass local Cree nation laws in this regard. However, as the hospital where I work as a provincially funded institution, it became clear pretty quickly that we needed to act in accordance to this provincial law.
Anyone living in the First Nation is also a resident of Quebec and thereby under the new law would have right to access MAiD at that institution. In most respects the protocols we put in place were exactly the same as those laid out for larger hospitals in larger cities. However, we did have to make a few adaptations based on our remote physical environment. For example, the law had stated that the physician has to collect the medications in person from the pharmacist where the medication is prepared in a special sterile environment, and that immediately after the procedure the physician had to return the empty medication containers and sort of the kit to the pharmacy back in person again.
This was simply not feasible for our reality as neither of the two pharmacies in the entire Cree territory of Northern Quebec, which is an area about the size of Western Europe, had this special sterile room that was acquired. It would also have meant that a physician would have had to take a special private flight, like a Medevac plane, from the village where the patient lived, down to Val-d'Or, to collect the medications in person, which is where the pharmacy was, fly back to the village to administer the medications, and then fly the empty boxes back down to Val-d'Or to the pharmacy to return them, and then fly back to the village. Each private flight, just to give you an idea, costs about $15,000. So that would add up to about $60,000 and just wouldn’t be feasible in terms of resources or time. And so we were allowed to tweak a few things and make a few adaptations sort of as we’re used to doing in the north.
Now in terms of how the idea of MAiD was perceived where I work, it was quite interesting. Some members of the community told me that there was no way this would ever be supported and that it wasn’t needed and that no one in the territory would ever access it. However, during our consultations with elders and with members of the community in a more anonymous fashion, we did have people saying that they were very much in favour of having access to MAiD and that historically societies have always found a way to care for those who have extreme suffering.
So really, the responses were sort of the same as everywhere else in the country: some people are for it; some people are against it.
Interviewer: Most of our listeners do not often have the opportunity to talk with practitioners, let alone practitioners working in smaller and remote communities. From a medical practitioner’s point of view, are there still areas of concern to you in the current legislation?
Dr Vanessa Cardy: In terms of the current rules, I wish that methods were made were uniform across the country in Quebec. People can only access MAiD through the assistance of a physician. And whereas in other provinces there are options of self-administered medications.
Insofar as the upcoming changes to the law that are being proposed, mental health is the main diagnosis is a concern for me, I do have to say. Not that I don’t believe that mental health causes suffering, but it’s just that the natural course of mental health concerns can be so variable.
For example, there is one mental health condition known as borderline personality disorder where people have chronic feelings of emptiness, sort of starting in their teen years. They have difficulty with interpersonal relationships and they’re often plagued by chronic suicidal ideation. Patients who have this often have history of abuse as well. So there’s a lot of sort of loaded social history in there. And this disorder can certainly lead people to have a difficult life and to have a very volatile and turbulent relationship history as well.
There are therapies that can help but there are no medications for this and there are no quick fixes. And I could certainly see and have certainly had patients who feel that life is unlivable in that state and they want out. However, people tend to literally outgrow the most challenging aspects of this disorder. And by middle age onwards they generally seem to suffer much less. So when I look at this from one perspective I can see why not allowing MAiD for this patient group seems to make sense. It isn’t something that’s only going to get worse with time and there is, so to speak, quote, light at the end of the tunnel.
However, at the same time I find it very difficult to think that I have the right to decide what constitutes unbearable suffering for another person. And also what right do I have to say that, yes, life is terrible right now and you’re suffering every day but, you know, just stick with it because in 25 years things are going to be better. I mean, I find this very challenging. So this is just one of my concerns. I’m obviously someone who believes in medical aid in dying. But this is something that I’m thinking about a lot.
And there are no easy answers and I guess that’s why there are no blanket approvals for medical aid in dying regardless of the condition.
Another area that worries me is that for MAiD based on a medical condition we say that palliative care options have to have been tried and shown to be not providing sufficient relief according to the patient. Now we know that access to care in general can be very difficult for those with mental health concerns, and particularly for those with more complicated disorders it can be really challenging to access good care. So given that rates of mental illness are high in disadvantaged groups, how do we ensure that the distress being experienced is coming from the mental health issue itself and not from a socioeconomic factor such as experiencing homelessness, experiencing poverty, having poor housing, or being socially isolated?
Now, I am in no way saying I have the right answer to these questions and I’m not sure there is a right answer, but these are certainly thoughts that trouble me.
Interviewer: Yeah. Definitely. Thank you for that.
So turning back to you, Shelley, you have probably heard some of the concerns that were raised regarding extending MAiD to people whose deaths are not reasonably foreseeable. Some groups have argued that this extension would disproportionately affect people with disabilities or people living in situations of vulnerability and or marginalization, and those people who can’t gain access to the medical support, housing and social support they need to live dignified life. What are your views on that? I know it’s a hard one but we would like to hear you.
Shelley Birenbaum: Well, I think to deny MAiD to persons with disabilities is unjust. But in terms of a disproportionate impact, I can say that we are now collecting, and the federal government’s been collecting from the provinces and territories, in-depth data. So on some of this we don’t have to speculate. They’ve published statistics. So for those who are listening, the most recent set of statistics are in the second annual report on MAiD statistics which is on the Health Canada website. And what they found during 2020 is the majority of MAiD recipients – 82.8% – had received palliative care. Of those who had not received palliative care during 2020, 88.5% were eligible and had it available to take advantage of that.
So one of the concerns has been, oh my goodness, if we just had better palliative care people would not choose MAiD. That’s not borne out in the statistics.
In terms of disabilities, in 2020 43.6% of MAiD recipients were reported as requiring disability support services. That was on the report and the data collected. Of those, the overwhelming majority – 90% – were reported as having received these services. So the notion that if only there were more disability supports there wouldn’t be a request for MAiD did not appear in the statistics that were shown in this report. And if they say that the results are consistent with the findings in 2019, which was the first major annual report prior to that, there were some interim reports.
But of course what I will say is: we have to work on all fronts. Do we have enough disability supports in Canada? The answer is no. Do we have enough housing? Affordable housing for all people? The answer is no. So we have to work on all tracks.
But the data is not showing that it is disproportionately impacting people. And if you look actually at the people who are taking advantage of MAiD as a treatment, the highest percentage – I have the stats somewhere – the highest percentage are those with cancer. Something like 67%. Followed by those with cardiovascular problems. Then respiratory problems. And then neurological problems.
So I guess that any disease could be considered a disability but it is not, like – primarily it is people with disability. It’s people with diseases that are very difficult to live with.
But to hold back MAiD as a treatment until we have adequate housing seems unjust. We have to do them in tandem and I am hoping that in the assessment process, and I’ve seen some information about this, if an assessor finds that if only Shelley Birenbaum could have some of the supports that you could get from homecare or friendly visiting or an additional support worker that they would put that in place and offer it because their job is to have an informed consent and offer all treatment capabilities.
So I’m hoping – is it perfect? Probably not.
Interviewer: Do you have any cues or ideas of how we can ensure as lawyers that people with disabilities or people living in situations of vulnerability have their rights fully respected when they request for instance MAiD and their death is not reasonably foreseeable?
Shelley Birenbaum: So if the client were to come to me or to any lawyer, I mean, generally this process although set out in legislation is a medical decision. It’s two assessors who are either a doctor or nurse practitioner making the decision as to whether you’re eligible for MAiD. But if somebody came to me as a lawyer I think we have to know that it is a recognized healthcare treatment, that there are criteria you have to meet, but if somebody is not being found eligible for MAiD then they do have a right to be assessed and I think we have to know that as lawyers and help people take advantage of what they’re entitled to.
And I believe too – let’s say you did meet with somebody – nothing precludes you from a second opinion. The way it works right now, as you might in any other healthcare matter, if you don’t feel that you were heard, you don’t have a right to compel a physician or nurse practitioner to find you eligible, but if you feel that you weren’t heard or your circumstances weren’t listened to and that you are eligible, then you can go to another physician or nurse practitioner. There’s nothing that precludes that. And that’s what I think we can tell our clients if they come to us.
Interviewer: There are so many myths around MAiD and there’s clearly a lack of understanding around the process. You already explained at the beginning of this podcast how it worked and also the safeguards. But do you have other myths that you’d like to tell us about that you can help us dispel today?
Shelley Birenbaum: I think there was one question about whether or not MAiD is the same as suicide.
Interviewer: Definitely. That’s a question that comes up often.
Shelley Birenbaum: Suicide or a desire to take one’s life just in the absence of a grievous and irremediable condition et cetera et cetera can be a situation of crisis where a person does need help and you need to explore that. And that is typically – it can be a fleeting type of thing, and I think it is different from MAiD, which requires, as you say, a detailed process and two assessors and you have to comply with all of these conditions and all of these safeguards.
So that is different than somebody taking their life in a moment of crisis and I think when, and let me say I hope because I hope it will come through, when mental illness is allowed as an underlying condition, if there’s any concern that what an individual or a patient is coming with is a suicidal ideation that is a fleeting ideation, that is conflated with their illness, you have to assess very deeply to make sure that the person has capacity to make that decision, offer them perhaps some treatments. There is a difference in law. They are treated differently. Under certain circumstances somebody who’s in danger of harming themselves or others, who suffers from a mental illness, may be confined involuntarily to a psychiatric facility. And you have to assess whether it’s a situation of suicidality or a situation where a person has gone through all the treatment possibility, has really decided that they have irremediable disease.
So that’s one of the myths. There is a distinction between suicide and MAiD as a treatment.
Interviewer: And also it’s another question that I have because I come across this [unintelligible 00:41:47] with this issue which is the right to consciously object. So how can you define it? Because sometimes if for instance your client faced someone who consciously objects to his or her rights MAiD. So how can you define it and can you please explain to us a bit more what it is?
Shelley Birenbaum: So the right to conscientiously object is the right of a physician or nurse practitioner or pharmacist, because the pharmacist is involved as well, to not directly perform or directly assist in performing MAiD if there is some kind of religious objection or conscious objection to that. And that’s permissible at law. It’s stated in – I think it’s stated in the criminal code, and also the health regulatory colleges because every health professional has a health regulatory college. They tease that out in policy.
However, no physician, nurse practitioner or pharmacist has the right to say I don’t believe in your right to MAiD. Because every person in Canada has the right to be assessed for their eligibility for MAiD. It has been adopted as a treatment here. And there’s no room for that. But there is room to say I won’t be the one to actually perform MAiD.
However, there was a case in Ontario taken against the College of Physicians and Surgeons of Ontario that said if you conscientiously object, that is your right. You still have the obligation to make an effective referral. So if I don’t want to perform abortion, I don’t have to be the one or I don’t want to perform MAiD; I don’t have to be the one. But that is your right if you are otherwise eligible and I must refer you to somebody who will help you, who will assess you and will provide the procedure if you so wish it. So that’s what the right to consciously object is. It’s really about performance.
If you were a physician, nurse et cetera, you can’t just say, I mean, that’s like saying, well, I don’t think you should have your leg operated on because I don’t believe in surgery et cetera. That’s it. It’s just not on. And an effective referral. Not to somebody in the ethers; it actually has to be somebody who will look at it seriously and work with you.
Interviewer: And how about you, Dr Cardy? Have you encountered any particular myth or misunderstandings surrounding MAiD which you could dispel or clear up for us?
Dr Vanessa Cardy: I think one of the biggest misunderstandings is the idea that palliative care and medical aid in dying are mutually exclusive. They are not mutually exclusive. In my mind they are part of a continuum. They are part of the spectrum of palliative care which is to relieve suffering. So in order to access MAiD you need to have exhausted the available palliative care options that are available to you. And we need people to understand that you cannot suddenly just decide you want medical aid in dying when you are first diagnosed with a terminal medical condition. There is a process and there are safeguards out there. And I can guarantee you that anyone who is involved in providing medical aid in dying does not do this lightly.
So be reassured that it has been thought about in this way and that people are taking this very seriously.
Interviewer: What must people facing this extremely difficult and complex situation be made aware of?
Dr Vanessa Cardy: If you’re a patient and you’re curious about medical aid in dying and the process, then reach out to your physician or nurse and ask the question. And if you aren’t getting the information you’re looking for, reach out to your provincial health authority or a different physician. Now, all doctors and nurses are compelled to provide truthful information about medical aid in dying. We are legally compelled to do so. But it is possible that someone might not be completely forthright. And if that occurs and you need a second opinion, then reach out for that second opinion and inform the college of physicians in your jurisdiction to let them know that this has happened.
Because even if a physician or a nurse practitioner does not have to provide medical aid in dying, they do have to give you accurate information.
Interviewer: Thank you very much. Finally my last question would be a more practical way. Now that the law has significantly changed or will significantly change by March 2023 –
Shelley Birenbaum: We hope.
Interviewer: We hope. Yes. Exactly.
Shelley Birenbaum: Yes.
Interviewer: What do you think lawyers and notaries working with clients facing end-of-life decisions must be aware of? For instance, what do they need to know to improve their legal practices and ensure they are respecting the specific rights and needs of their clients?
Shelley Birenbaum: So one we’ve talked about, which is helping people understand they have this right if they’re in some kind of situation. But beyond that, it’s always helpful if lawyers can discuss end of life issues with their clients. People don’t like to talk about death. They think if they – my thought about this is people think if they talk about it they’ll make it happen. As far as I know, talking about death doesn’t make death happen, and as far as I know death is for certain. So I know those two things.
So one of the things we can do as lawyers, especially in the estates bar or in the health law bar, if somebody is doing their planning, is to help them develop powers of attorney. So you can have a power of attorney for property but you can also have a power of attorney for personal care. So it’s really important, which basically says who will speak for you if you no longer can speak for yourself in a healthcare manner.
And to start to think about something that is called advanced care planning. These are documents that aren’t, at least in Ontario, legally binding. In some provinces they are; they have advanced directives. And people actually set out what their wishes are for care. And it’s really important to start thinking about that. And nobody wants to and no young buck thinks that he’s going to have a motorcycle accident and be in a position where he can’t talk for himself. So I think how we can help people is to start talking about it in the same way that you want to do estate planning and make sure your money is taken care of, the same way you want to do a will, you want to do powers of attorney.
And if – let’s say we do have advance requests and that becomes part of MAiD, then you will be in a position to help your clients fill out if they want to do a declaration or some kind of advance request. If they’re diagnosed with an illness then presumably you’re going to be able to help them with it.
There are a number of resources that I’ll mention that help educate individuals and can help educate lawyers. Dying with Dignity Canada website has a fabulous array of the laws about end-of-life care. They have a patients’ right booklet. They have advanced care planning workbooks where you actually sit down with the person that you’ve chosen to make your substitute decision maker and you talk about values and wishes.
It used to be, just to go back in history, people made very specific statements about what kind of treatment they wanted. The current thinking is you talk about your values, your wishes. What kind of life is a life that you wish to have? And you try to get yourself so that you’re on the same wavelength with somebody. And if you find out that the substitute decision maker that you’ve chosen has a problem with some of the things that you want, you need to find a different substitute decision maker.
And that’s – you know, that kind of work can be done. So a conflict of interest. I used to sit on the board of Dying with Dignity Canada, so – but I really think their website is an excellent one. There’s also this group of Canadian Association of MAiD Assessors and Providers. So any physicians that might listen to this podcast, they have a wealth of information of guidance and they have conferences. I think one of the principles in that – one of the founders of that group, Stephanie Green, just wrote a book. I think she’s wrote a book that’s been published about her experience. She’s done a number of MAiD procedures.
There’s also the end of life law policy in Canada piece of the health law institute at Dalhousie University. Jocelyn Downey I think runs that. And they also have very, very clear direction. So if any lawyers looking for the current law, you can really trust that website.
Advocacy Centre for the Elderly as well has information about powers of attorney. I didn’t see specifically information about MAiD but they have a number of things about healthcare that I’m sure are relevant to MAiD.
There’s also an Advanced Care Planning Canada website. Again they’ve got guides on how you raise the issues of end-of-life care and they also have planning workbooks. And the Ministry of Health and long-term care as well has a lot of resources on its website.
Interviewer: Thank you very much. I mean, to have all those resources I think is very useful and I think also because one of the issues sometimes I think that lawyers, we might wonder how we can be comfortable discussing terminal illnesses, death, and everybody, what they have in mind is like, well, I mean, I’m so uncomfortable talking about this with my family so how would I be comfortable talking about with a client? But it’s kind of your duty also as a lawyer to talk about these, so.
Shelley Birenbaum: And it’s easier.
Interviewer: Yeah.
Shelley Birenbaum: It’s easier for – it’s sometimes harder with your family because to have these end of life discussions, and I’ve been having them with my family since – for many, many years but you actually – sometimes you have to make a meeting. I mean, in a family context but somebody walks into a lawyer’s office. They talk about planning for the future. It’s the perfect opportunity. And they’re not related to you so you don’t feel quite as squeamish about it. So it’s a great opportunity. It’s a public service to that person. So that’s my thought.
Interviewer: More or less the same question to you, Dr cardy. To finish up, do you have any advice on how to get the conversations on end of life started and what to consider having done so?
Dr Vanessa Cardy: There is a question that medical providers ask themselves when wondering if we need to address end-of-life planning for a patient and it’s called the surprise question, and it goes like this: would you be surprised if this person died within the next year? If you would not be surprised, then it is time to talk about death and dying with that patient. Patients overwhelmingly want to talk about these topics based on studies that have been done, but they will often wait for the healthcare provider to broach the subject. So let’s normalize talking about death; take away some of the stigma in talking about it and just simply set the example of talking openly about end of life in all parts of our life.
We’re all going to face death at one point, so let’s make talking about it a much less onerous and stigmatized task.
Interviewer: Thank you both for joining us. That was very interesting.
Dr Vanessa Cardy: Thank you so much for having me. It was a real honour to be here and to discuss this really important issue.
Interviewer: Honestly, it was very interesting. I think our listeners really enjoyed it as much as I did. I hope. So thank you very much for joining us today. It was very great.
Shelley Birenbaum: OK. My pleasure.
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