Voiceover: This is The Every Lawyer, presented by the Canadian Bar Association.

Marlisse Silver Sweeney: Welcome to The Every Lawyer, a Canadian Bar Association podcast. I'm your host, Marlisse Silver Sweeney. It's the understatement of the year to say there's been a lot of health news in 2021, but something that's gone under the radar for some of us were important updates to Canada's Medical Assistance in Dying legislation, or MAID. I say some of us because the CBA's End-of-Life Working Group has been working tirelessly on advocating for these changes brought through Bill C7 this March.

Today on The Every Lawyer we'll discuss the CBA's influence on the implementation of Bill C7. Our guest is Shelley Birenbaum. She's a member of the CBA's End-of-Life Working Group and a health lawyer with the Ontario Bar for over 25 years. She specializes in the legal and ethical aspects of assisted dying. Thanks so much for being here with us today, Shelley.

Shelley Birenbaum: It's a pleasure to be here, thank you.

Marlisse Silver Sweeney: I understand the Working Group had some concerns with Bill C7 in its original form, things like the exclusion of a mental illness from the definition of a serious and incurable illness, disease or disability. Will you walk me and our guests  through the major issues that the working group fought for?

Shelley Birenbaum: Sure, so just as context in case you want to know, we've been meeting the End-of-Life Working Group for about seven years. And our most recent work has been on Bill C7. We were very concerned to see in this legislation – this legislation was put into force to deal with a court case called Truchon, and that court case said that your death did not have to be reasonably foreseeable to be eligible for medical assistance in dying. And that was the purpose of this legislation.

However, as governments always do, they add things in. And what they did was exclude mental illness from being a condition that was eligible for MAID, and there was no reason to do that at this point in time. There was always meant to be a study of mental illness and how you best protect an individual so that if they were suffering from a mental illness they could still be eligible. But there was an absolute prohibition in the legislation from this so we were quite concerned about that. In our view there's likely going to be constitutional challenges and we argued that it was not appropriate.

Marlisse Silver Sweeney: That's really interesting and – so they added in but it wasn't contemplated in the Truchon decision?

Shelley Birenbaum: It was not at all contemplated in the Truchon decision. It wasn't contemplated in the original Carter decision, which was the decision that allowed us to have assisted dying. They didn't deal specifically with mental illness but there was no notion in there about exclusions for mental illness. It's been in the background and the assisted dying has been in legislation since approximately 2016, falling upon the Carter decision. It's been there in the background. There's been some studies done but it's premature to say it should be totally excluded. Most people that study the issue feel that you need to be sufficiently content that that person, it's an ongoing wish that they are in deep suffering, that they have been able to look at all their alternatives.

But the Federal Government introduced legislation and said, "No, won't be considered eligible." And that's really excluding a whole group of people that might wish to have assisted dying. I don't think there will be a lot who would want to do that. So what they did, and one of our members, Abby Roberts, appeared before a number of committees and we made submissions against the unconstitutionality of that. Federal Government came back; there is going to be an expert panel struck and it's to look at the issue of mental illness over the next year and to report back in March of next year.

And then within two years a provision regarding total exclusion of mental illness is to be expunged I hope. And there will be perhaps safeguards that have been developed in the meantime to assure and reassure people that we have a good way of protecting people who suffer from mental illness while allowing the autonomy to them of choosing an assisted death.

Marlisse Silver Sweeney: OK, well thank you so much for your explanation of that issue. I understand there were also a few others, like advanced requests were made and people under the age of majority. Will you talk to me about those issues and what the positions that the CBA took on those?

Shelley Birenbaum: Sure, there are two other issues in addition to mental illness, and you got them right. They're advance requests, and they're the issue of mature minors. In terms of advance requests I'm sure most people know of somebody who might be suffering from a cognitive illness such as dementia. And as we live with them and as we look at them we might say, "I want the ability under certain circumstances in advance to say that if I suffer from a certain illness, and there are certain criteria where for example I don't recognize my family, I'm unable to take any care of myself, I would like the ability in advance to say that under those circumstances I would like to have an assisted death."

The problem that exists is that the current MAID scheme requires that you give consent right before the moment of death. So, and you have to be capable to give that consent. Well if I am, if I, Shelley Birenbaum am diagnosed with dementia, likely the criteria that I say under those circumstances I don't want to continue living, I'm not going to be considered capable of making a decision at that time.

So in our view, and when I say our view in the End-of-Life Working Group or the Canadian Bar Association that we're a committee of, we believe that there should be a schema that permits advanced requests that provide safeguards. You want to make sure that people aren't just deciding when somebody should die. It is an individual decision and it should be a document – and that hasn't even been worked out – but a document or something that indicates under what circumstances.

So this was not dealt with at all in Bill C7. What Bill C7 did would say on the issue of advance requests and on the issue of mature minors [unintelligible 00:06:59] to, we will have a joint parliamentary committee comprised of senators, members of the House of Commons. They will come with recommendations, and then we will – hopefully doesn't commit to implementing the recommendations but the recommendations will be made to government on that.

So advance requests is not dealt with at all. There will be some good in Bill C7 though, and this is something that our End-of-Life Working Group tried for a long time to say. There was a ten-day, it used to be a ten-day period between when you made your request for MAID and when you could have it. And there was always the danger that you would lose capacity in between.

There's now a mechanism where you can, in advance if your death is reasonably foreseeable, say, "Should I lose capacity I still want you to go ahead with assisted death." So that was a bit of a win, and that was something good that came out of Bill C7. It's only if your death is reasonably foreseeable. And it's complex because there were one series of safeguards in Bill C7 if your death is reasonably foreseeable.

And one set of safeguard if your death is not reasonably foreseeable, in the latter case, that doesn't apply. But at least we've got precedent now to say we can see a situation where somebody in advance can say, "Even if I lose capacity I still want you to go ahead." And I think that opens the door a bit to advanced request. It's my hope.

Marlisse Silver Sweeney: OK, great.

Shelley Birenbaum: Nobody said that but that's my hope and we're looking at that. So the End-of-Life Working Group, they are looking at the issues of mental illness, advance requests, and mature minors to make some further recommendations. But I think we feel comforted that there's at least some acknowledgement in C7 that you don't have to consent just before you die.

Marlisse Silver Sweeney: Right, and even a mechanism it sounds like now for putting that into place.

Shelley Birenbaum: Absolutely, because you can imagine what happens, is that somebody therefore has to take their life before they're ready to take their life. Well if I fear that I'm going to lose capacity I'm going to have to take my life before I lose capacity. So this is where advance requests are really important, so that was a good thing.

Marlisse Silver Sweeney: OK, thanks for explaining that so clearly. And then I guess the last thing I wanted to talk about under that category of kind of major issues that the Working Group was thinking about was people under the age of majority or mature minors as you call them, what's going on with that category of people?

Shelley Birenbaum: So again this was not dealt with head on in Bill C7. It is still, it's part of the parliamentary committee's job to look at that, senators' and House of Commons members' to look at that for recommendations in the next year or so. What that means is basically across Canada – and I'm generalizing; I'm an Ontario lawyer so in Ontario, and it's pretty similar in most provinces – we don't determine capacity to make treatment decisions by age. We don't say in Ontario, "When you're 16 you can make the decision, treatment decisions." We look at are you capable of understanding information about a treatment decision and do you understand or what are the consequences of making a decision or not making a decision?

So in our view the same criteria should be applied to MAID. And a true minor means an individual who's not yet reached adulthood; Carter talked about adulthood but didn't say mature minors shouldn't be eligible but they were dealing with a situation of an adult. We are going one step further. We're saying if you've got a younger person who is not considered an adult in Ontario, that would be 18, and they fully understand the information relevant to a MAID decision and understand that if you do choose MAID, you will not be here. That means that you will die, etc.

But those people that understand those, I want to call them youth, that can understand that should have the ability to choose MAID as a treatment decision. I think it would be very rare. Very rarely are children in a position of dying from an illness in their childhood; however, to preclude that group is to take away from them autonomy and to not allow them the full specter of choice.

And just so people understand, MAID is not just a small thing. I mean there are a series of criteria that must be met, including intolerable suffering. And it's a subjective test. Suffering that's intolerable to the individual, you know, they've been told about all the available treatments. They likely have tried, although it's not a requirement, they have tried everything. They must only have tried everything that they are willing to try.

But I mean, and there's two assessors and it seriously looked at there needs to be a witness to your application for MAID. So it's not something taken lightly. But to say to a 17 year-old, "Just because you're not 18 you don't have the right to make that decision" is arbitrary and in our view very likely unconstitutional.

Marlisse Silver Sweeney: Right, OK. And so again this wasn't in Bill C7 but it is something that the Working Group is working toward?

Shelley Birenbaum: Correct. The only reference in Bill C7 was that there was going to be this parliamentary committee struck, and they are to look at those three issues: mental illness, under what circumstances you should be able to request MAID, if you have mental illness, under what circumstances, if you're a mature minor and do we want to have a system of advance request. So it wasn't dealt with but at least there was parliamentary committee struck to deal with it, so that recommendations are going to come back to the government and we're hopeful that there will be progress on those issues.

Marlisse Silver Sweeney: OK, and what does the timeframe look like for that legislative group. Do you know?

Shelley Birenbaum: Yes, I do. I believe that – I'm just trying to think when they have to come back. They have to commence their review by April 17, '21 I believe, and submit a report, including statements of any recommendations within a year. So that's within one month of – boy, we're past that. It reminds me, so one of the tasks of the End-of-Life Working Group is to keep on top of what the government has said it would do. And one of the items we're looking at, do we send correspondence, do we write to the Justice Ministers and the Ministers responsible for legislation saying, "When has that been struck and who's on it?" and we offer our help. So it means that should've been struck by now. That's one month after Bill C7 came into force. And they are to report back within a year, –

Marlisse Silver Sweeney: OK, so this is all happening right now; this is very current.

Shelley Birenbaum: Should be happening right now.

Marlisse Silver Sweeney: Yeah, you mentioned just in your previous answer about the different impediments that somebody has to go through in order to access MAID. You mentioned something about two assessors.

Shelley Birenbaum: Yes.

Marlisse Silver Sweeney: That actually was a question that I had for you, was I understand that those are some of the issues that the CBA is taking apart, taking on as well, the idea of needing two assessors or having practitioners to agree. Can you explain those a little bit to me, the CBA's [cross-talk 00:14:43] issues?

Shelley Birenbaum: Sure, sure. What we took issue was, and this was in Bill C7, so right now you have to have, it's physicians and nurse practitioners who can do these assessments right now. So you have to have two assessors who are either physicians – and they're not related to each other – who deem that you meet the criteria for assisted death. I don't think we've ever said two was too many, but what happened in Bill C7 was they imported a notion that if one of the two assessors was not a specialist in the condition that the person asked for MAID is suffering from that they had to be a specialist.

Marlisse Silver Sweeney: Oh, wow.

Shelley Birenbaum: And we thought, you know, in remote communities, I mean think of now where there's a global pandemic and it's very difficult to see any physician or specialist.

Marlisse Silver Sweeney: For sure.

Shelley Birenbaum: But this would be a big impediment. I mean it could be a rare disease you're suffering from, it could be something you can't – I mean it's not like you want to wait six months, eight months, twelve months to see a specialist. So we said that that was putting impediments in front of people before they could meet the criteria for assisted death, and the government listened. I mean we are not the only one making some of these statements but this was a statement we made, and Monsieur Robert, she put that before the committee when he was speaking about the End-of-Life Working Group committee recommendations.

They changed it to say that if the physicians, if neither of the two assessors are specialists in that area that one of the two must consult with a specialist and share that info. One of the two or the patient, the individual who wishes assisted death, must consult with a specialist. But it allowed it to be that one of the assessors could, which is much easier. And I think, I mean I don't know that that's necessary. I would've trusted that physicians are duty-bound not to render an opinion in areas that exceeds their scope of practice. However, at least it meant that a physician could contact a colleague's specialist to do that rather than requiring that the individual have met with a particular specialist to do the assessment.

Marlisse Silver Sweeney: Right.

Shelley Birenbaum: So that was an impediment and I'm hopeful that our advocacy on that made the government think a little bit about what it meant for individuals in blocking access to MAID.

Marlisse Silver Sweeney: Of course, yeah. I'm just thinking about, I mean I'm from Vancouver and I'm just thinking about the long lines it takes to see a specialist. And if you're trying to access that type of, you know, you're obviously not willing to wait those six, eight, twelve months.

Shelley Birenbaum: And even just, they were really topical; we're in the middle of a global pandemic in which anything unnecessary query, and I don't have the answer to that query. If assisted death, consultation, a consultation with the specialist would've been seen as one of those essential services that at least in Ontario right now, everything's being cancelled. So even more so in today's climate, which has gone on for a long time, would it have created impediments?

Marlisse Silver Sweeney: Right, of course. And what about the criteria that practitioners must agree?

Shelley Birenbaum: I don't think we've ever taken issue with that. As a pragmatic matter, nothing precludes you from going to a different physician or a different nurse practitioner if you don't get the second person agreeing. So there's nothing to preclude you from moving on, so I think there's a safety mechanism built in. I don't think it's a bad idea. None of us take this lightly; this is death and I think we have to take it really seriously. So I don't think our committee has every felt that that was inappropriate.

And there is the safety mechanism that is I were to go to two physicians; a second physician did not agree, I could pick a different physician. I could probably go to two other physicians. What has happened, I mean not anybody feels competent to do this. So let's say I just go to my family doctor, and she's not up on this. Because those people who do assessments, and it's not every physician that does it. There are forms to be filled out, there are statistics, there are reporting requirements; so not everybody does it. And if you go to somebody who isn't familiar you may run the risk that they're just not familiar enough with the whole system to give you the response that you're looking for. So in some ways I think it's OK to have two assessors, and we've never taken a position against that.

Marlisse Silver Sweeney: OK, OK, well thanks for explaining that to me. So my next question is what do lawyers who practise in these areas of health law and wills and estates I imagine, what do they need to understand about these issues as they're being legislated and they're currently in practice? What do they need to understand for their legal practices?

Shelley Birenbaum: That's a really good question. Certainly health lawyers needs to understand that there is assisted death. They will be consulted by hospitals – a health-law lawyer deals with any person, group, association that deals with the delivery of healthcare. They will be asked for advice on medical assistance in dying, they will be asked to draft policies, they will be asked about changes in the law; so they need to be up on what's required to advise any organizations they deal with.

And I think we need to know it in order to be able to advise our clients. There may be somebody, so for example Truchon and Gladu, who were the plaintiffs in the Truchon case, as it's referred to. They had to seek counsel to challenge the impediments to them to have an assisted death. So I think it behooves all lawyers to under that this schema exists.

I also think wills and estates were – and our End-of-Life Working Group is drawn from many different sections of the CBA, including wills, estates, including alternate dispute resolution. There's health, there's child and youth services, etc. This impacts on everybody. We're all going to die. This is a topic that's of interest and touches upon every scope of practice. So somebody writing their will, it's important that they understand, or a lawyer that's doing a will for somebody that they understand the circumstances of assisted death etc. to see if there's any impact on a will.

I also, and this is – I'm going off-script here but what the heck – I think it's really important to help people understand that they need to make their end-of-life wishes known. And where assisted death becomes something we can do in advance, whether it's treatment decisions, as lawyers we need to explore this with our clients. People are not comfortable speaking about death but we need to be; we work in [areas of? 00:21:49] death.

Think how much work goes into drafting a will and thinking how you're going to dispose of your property and all – you have two witnesses and every page is signed – well I think the same kind of care needs to be taken as to what your wishes are for end of life and how you can affect those wishes. Many lawyers do powers of attorney and they name our substitute decision makers who'll make decisions on our behalf. I think that all counsel should be aware of this, whether you're litigation, whether you're estates, whether you're heath law, child and youth services, if you're dealing with a mature minor, this is something that impacts everyone.

Marlisse Silver Sweeney: For sure, yeah. What's the quote? The only things that are sure in life are death and taxes?

Shelley Birenbaum: Yes!

Marlisse Silver Sweeney: Going back actually towards wills and estates, this might be getting into the weeds a little bit, but you did mention that there's a new mechanism that's been brought on by Bill C7 where people can – if they lose capacity within the ten days of wanting to trigger MAID – they're able to still go through with it? I was just wondering who is the person that can actually then, if the person loses capacity, if they can trigger MAID and how does that work? And how might that work if we import for the advanced directives?

Shelley Birenbaum: Well you've raised a fascinating question in terms of advanced requests that I don't think has yet been fully drilled down to who's going to trigger it, and who's going to decide that you meet the criteria. In terms of what's in Bill C7 to pull back for a second, it would've been that you've already got a date or a time for assisted death. So it wouldn't be that somebody would have to interpose and say, "Yes, she still wants it." I have not seen that in the legislation. It would be that you could continue on with the plan for assisted death, even if the person couldn't look at you and say, "Yes, I still consent."

Marlisse Silver Sweeney: Got it.

Shelley Birenbaum: The safety mechanism, even within that, so that if you by words or gestures indicate – even though you would be considered incapable – that you don't want this assisted death, that would trump it, OK? That would trump continuing on with assisted death. In the absence of that, so if somebody were to, whether it was by needle or whatever, really vociferously indicate they don't want it, you would have to stop.

But barring that, my reading is that the healthcare practitioner go on and continue with the plans for the assisted death.

Marlisse Silver Sweeney: OK.

Shelley Birenbaum: In terms of advance requests, and even in our End-of-Life Working Group, we broke down into three subgroups to see if we need to do some further work on advance requests, mature minors and mental illness. One of the things we will be looking at is who will trigger, who will trigger it if I, Shelly, say, "Under these circumstances I would like to have an assisted death," and I put it in a document, is it my substitute decision maker who will say, "I think she's met the conditions." Is it a physician? What kind of assessment will need to be made to make sure that those conditions are being met?

I think we need another system, like we have currently for assisted death that would assess that in fact the criteria are clear that I've said, that I've met those criteria. I'm not indicating through words or gestures or any other way I can communicate that I don't want this. To I think that's to be worked out and I think that's a really, really good question.

Marlisse Silver Sweeney: OK, and is that for, say that's something that the Working Group will consider in the future, depending on what the legislative group reports back?

Shelley Birenbaum: Yes, we will be considering it. One of the things we do though is we focus more on policy in a broader context rather than drill down to the specifics. We aren't government. We will work with government when there's issues or issue areas we think we can be useful in; we will make suggestions. But typically we haven't done the exact model. We've said, "This is what needs to be looked at, these are the types of considerations." It may be that we move the markers a little further because it can be helpful. But we're not the ones that are designing all of the systems, we're saying all of the things that need to be taken into consideration.

And I think with advance requests you have to go a little further than we ordinarily might. But in general we're working on policy directions and – do you want to know how we put forward our – I'll wait for your questions.

Marlisse Silver Sweeney: Actually, you know what? That's so funny. You are anticipating my questions. But my next question for you was, as a Working Group, how do you decide where you land on the issues? Like for example the rights of minors to access MAIDs is really a fraught issue. I've been doing lots of reading on it. What does that conversation look like in your Working Group?

Shelley Birenbaum: Typically we've broken down into smaller groups of the End-of-Life Working Group to look at issue area. And what we've done historically, we've gone to the Canadian Bar Association with five different resolutions on end of life. And you draft a resolution, you work in a working group, and you've got lawyers from different sections from health, child/youth services, estates, etc. We come to a policy position; we checked that policy position with our various sections because CBA is broken down into various sections based on the type of law in practice. We discuss it with the sections and then we bring it to an annual general meeting of all lawyers in the Canadian Bar Association and show up at the meeting. There's 36,000 lawyers, law students, etc. that are part of the CBA.

They then vote on those resolutions. So our resolutions on mature minors, i.e. that they should be eligible to have MAID advance quests, there should be advance requests allowed. Mental illness, it should be not a category that's excluded from MAID. These were all passed, and from what I can see is they were passed unanimously by the body that voted at the annual general meeting.

Then that becomes a policy position for us, and because of that we have a period before the Senate. We've been invited to appear before the House of Commons, before committees that are considering the legislation. And we know behind us we have a fully-approved policy position. We may push the markers a little further but it all accords with what the policy positions are. So that's typically how you develop policy.

And we take into account that really, the CBA is focused on clarifying the law and pushing forward and making improvements in the administration of justice. So those are two overarching principles that we use. But once we've got these policy positions we can then take them forward in writing submissions, appearances, letters. And if they ever wanted us to sit on the committee, I'm sure we would as well.

Marlisse Silver Sweeney: So it's really a reflection, these positions, of the 36,000 members of the CBA?

Shelley Birenbaum: Yes, yes. When we say that the CBA has passed a resolution, that's for the whole group,

Marlisse Silver Sweeney: OK. Well you're a busy person and I don't want to take up too much of your time.

Shelley Birenbaum: No problem.

Marlisse Silver Sweeney: But my last question for you is what work is left to do? You've been working on this I believe for, did you say seven years, since before the –

Shelley Birenbaum: Seven years, yes.

Marlisse Silver Sweeney: Yeah, where does the working go from here?

Shelley Birenbaum: Well, I think we further develop the areas of advance requests, mature minors, and mental illness. We just started. I mean in some senses it was a huge, huge event when assisted dying was something that the Supreme Court of Canada recognized that you can't deny people the ability to do that. But the details and the progress on that so slowly. So even though it looks like we've got everything we want, we don't. We don't have an advance requests; we still have mature minors who can't have access to MAID. And mental illness as of today, you can't have an assisted death. We need to continue to work. We need to continue to bring ideas forward.

What I've noticed is that change can be slow, but after a few years, after people get comfortable with one concept when assisted death started to become part of what's allowable, what's permissible, you move forward. And there's lots more to do.

Marlisse Silver Sweeney: Right, OK. Well a nice note, or not a nice note but a note to end it on. The work is no done; there's still years and years of advocacy ahead on these issues. But thank you – oh sorry.

Shelley Birenbaum: I want to tell you one other thing. I think that most of the people working on this committee have found it very gratifying. Because as we talked about, that everybody is going to die, and bumps up against death, either in their practice or bumps up against it with family matters, etc., it feels good to really think through these issues and to allow people to choose the manner and when they die. And to do it in a manner that is as free from suffering as possible.

So I think people have really, that sat on the Working Group really enjoyed the work. So I would encourage anybody to sit on a CBA committee on issues that speak to them.

Marlisse Silver Sweeney: Well thank you so much. That is a nice note to end on. So thank you, Shelley for explaining all those issues.

Shelley Birenbaum: OK, thank you.

Marlisse Silver Sweeney: Such important work on a critical issue. If you want to learn more, our website has many articles about the work being done by the CBA in this area. Tweet to us @CBA_news, or you can reach me at my handle @MarlisseSS. We are on Spotify, Apple Podcast and Stitcher wherever you listen to podcasts. Subscribe to receive notifications for new episodes and leave us a review.

We also have a podcast in French called Juriste Plancher. Thanks for listening. Stay tuned for the next episode.