Medical Assistance in Dying Committee on Nov. 1st, 2022

[The Joint Chair, Hon. Yonah Martin (Senator, British Columbia, C)]

I call the meeting to order.

Good evening, everyone. Welcome to this meeting of the Special Joint Committee on Medical Assistance in Dying.

I'm Yonah Martin, and I am the Senate's joint chair of this committee. I'm joined by the Honourable Marc Garneau, the House of Commons' joint chair—

[Luc Thériault, Bloc, Montcalm, QC]

Excuse me, Mr. Chair, but I can hardly hear the interpretation. There was none at all at the start.

I'd also like the sound in the room to be adjusted.

Lastly, I'd like to know if the sound tests were successfully completed for all the witnesses.

[The Joint Chair, Hon. Yonah Martin]

We're not getting the English translation at the moment. We have tested the sound quality for each of our witnesses, and I'm told that we're ready to begin. However, I didn't hear the English translation of Mr. Thériault, so I'm assuming that everything is okay. We'll continue. Let's see how this goes.

We're continuing our examination of the statutory review of the provisions of the Criminal Code relating to medical assistance in dying.

I'd like to remind members and witnesses to keep their microphones muted, unless recognized by one of the joint chairs. I'll also remind you that all comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly. Interpretation in this video conference will work like an in-person committee meeting. You have the choice at the bottom of your screen of floor, English or French.

This evening, we'd like to welcome our witnesses. Thank you very much for joining us. Your testimony will be very important to our study.

We will have our witnesses in the order of Dr. Chantal Perrot by video conference, followed by Professor Peter Reiner, professor of neuroethics in the department of psychiatry at the University of British Columbia, and Dr. Jennifer Gibson, associate professor and director of the joint centre for bioethics at the University of Toronto.

Again, thank you to our witnesses.

We will begin with opening remarks. Each of you will have five minutes. I hope to give you a four-minute warning. When there's one minute remaining, I'll say, “one minute”. If you can keep your remarks to five minutes, it will be very helpful for us to keep our time.

Let's begin with Dr. Chantal Perrot.

[Dr. Chantal Perrot, Doctor, As an Individual]

Thank you, joint chairs and committee members, for the opportunity to speak with you today.

I live in midtown Toronto, on what was the shore of the old Lake Iroquois. This is the traditional territory of the Mississaugas of the Credit, the Haudenosaunee, the Huron-Wendat, the Anishinabe and the Chippewa, and it is still home to many diverse indigenous peoples.

I'm a community-based MAID assessor and provider—since July 2016—and chair of the board of MAiDHouse, a director of Dying with Dignity Canada, co-chair of the Dying with Dignity Canada clinicians advisory council, and a member of the CAMAP complex cases working group, developing the new national MAID curriculum. However, I am speaking today as an individual not representing any of these organizations.

I appreciate the work of the Canadian government in considering so thoroughly and carefully the issues related to and raised by MAID. I have learned from listening to the many hours of testimony presented to the various iterations of MAID-related committees over the years. Hearing all these different points of view and being challenged by others' opinions and beliefs have contributed to improving my MAID practice. I have something to say about all of the aspects of this committee's deliberations but will limit my comments today to advance requests.

While I would much prefer to provide MAID to a person who is conscious and capable of providing consent at the time they receive MAID, there are conditions and events that occur which lead to the loss of capacity or even loss of consciousness. A number one fear expressed by most people I know and virtually all the patients I assess for MAID is that they will lose the capacity to request or consent to MAID and thus have to die a natural death in circumstances they find abhorrent and intolerable. The addition of “Audrey's amendment” in Bill C-7 went some way to alleviate the fears of some, but it did not go far enough for most people.

Most of my patients are not interested in staying alive until the very end of a natural death. They actively choose MAID. However, they also want to live as well as possible for as long as possible. There is much uncertainty when it comes to dying, and thus much anxiety. Many people fear losing their physical capacities and thus their autonomy, or developing dementia and losing their cognitive capacities or losing the ability to direct their own care.

I am frequently contacted by people who want to be assessed for MAID because they think they could then have it at a later time of their choosing or in the event that they become incapable in the meantime. Some, like the two patients I assessed yesterday, are shattered on learning that this is not possible. They don't want to die now even if they are eligible. They certainly don't want to set a date for MAID, but they know what is likely coming their way within a few months or years. They know what they want to try to avoid, and being able to write an advance request for MAID would alleviate a tremendous amount of their current suffering and anxiety about end of life.

To date, I have cared for people like this by starting an assessment, gathering the background clinical information I need to know and then keeping in touch with them on a regular basis. The assessment is completed if and when they want MAID and are prepared to set a date—sometimes months in the future and sometimes years. This gives them comfort and me ongoing work, but it does not replace the benefit an advance directive or advance request would confer.

My mother died in 2009. She had fallen and hit her head and, in part because she was taking anti-coagulants for one of her medical conditions, she had a brain bleed. She had surgery, which was successful, but she did not wake up, and the scans and examinations did not suggest a positive outcome was likely. Because I had talked with my parents over many years about their end-of-life wishes, and because they had answered my many questions and completed and regularly updated forms I gave them to create their statements of end-of-life wishes, I knew what to do. It was difficult, but I was reassured by the certainty that I knew what my mother had wanted in the event something like this happened. She died never regaining consciousness, but with her family around her for the last days of her life.

I've just come back from visiting my 96-year-old French-born father, who lives in Texas. He would much prefer to live in Canada—what he considers the most civilized country on the planet—but he and my mother waited too long to start the immigration process, so he had to content himself with lengthy visits while he was still able to travel. He is now frail and weak of body, but sound of mind. He still carries a torch for my mother, whose pictures surround him in his apartment. While he looks like he should be suffering, he really isn't. He would be content if he went to sleep and did not wake up, dying peacefully, but he has no interest in or desire to hasten death in his current condition. I have provided MAID for many patients who were not as physically debilitated as he is. Were he living in Canada, suffering intolerably and asking for MAID, he would be eligible. He would also want an advance request.

All this is to say that advance requests and advance directives are important and actionable. Speaking with a designated attorney or future substitute decision-maker about one's wishes in the event of incapacity is important. Clearly outlining the care one would want to receive and the care one would not want to receive is crucial. This is the information that will guide those tasked with one's care. The more detailed this information is, the better, particularly when it comes to advance requests for MAID.

Ideally there would be a national database to store advance requests. The onus would be on health care providers to inquire about the existence of an advance request and then to access it. This would allow patients, no matter where they fall ill in Canada, to have their wishes available to those who need to know in order to provide care.

It's a big responsibility to take on the role of attorney for personal care or SDM. It requires a lot of time, thought and education. I think most people have no idea how much is involved or how much will be asked of them. It will be even more complicated and complex when it comes to advance directives or requests that include MAID, but I believe it can be done and done well with careful planning and guidance.

I've seen well-drafted advance directives at work—

[The Joint Chair, Hon. Yonah Martin]

Thank you, Dr. Perrot. Will you kindly wrap up. It is a bit over time.

[Dr. Chantal Perrot]

Yes.

Over time and with experience, templates for MAID advance directives can be drafted, refined and improved. I would be pleased to provide you with my thoughts on what should be included in an advance request for MAID. I have provided some in the written piece I submitted.

Thank you.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much, Dr. Perrot.

Next, we'll have Professor Reiner for five minutes.

Professor, go ahead.

[Professor Peter Reiner, Professor of Neuroethics, Department of Psychiatry, University of British Columbia, As an Individual]

Thank you very much for inviting me to speak before this committee.

I am a professor of neuroethics at the University of British Columbia. Today I'm going to outline for you a problem and then share some solutions.

If advance requests for MAID become legal, one might think that all that is required is to properly fill out a form and that, when the time comes, a MAID provider will take care of the rest. Unfortunately, that might not be what happens. Evidence from the Netherlands, where advance requests have been legal since 2002, reveals that physicians do not always comply with dementia patients' wishes. Indeed, very few advance requests have resulted in dementia patients' receiving MAID.

In order to anticipate what might happen in Canada if advance requests for MAID in dementia were legal, my colleagues Adrian Byram, Ellen Wiebe, Sabrina Tremblay-Huet and I asked 103 MAID providers working in all provinces whether they would provide MAID under the aegis of an advance request that listed the sorts of specific circumstances that have been discussed often in these proceedings. The vast majority agreed that they would provide MAID if the patient was able to provide full consent. However, as we changed the description of the situation to include circumstances that would likely apply as dementia takes hold—nodding yes instead of providing consent, unresponsive patients but agreement by the family, or reliance upon the written advance request without anyone else to agree that “it's time”—as we moved along that spectrum, the percentage of providers who would offer MAID to dementia patients decreased to the point where substantially less than half would agree.

These data suggest that advance requests for MAID in the case of dementia do not represent a slippery slope. Rather, their implementation represents an uphill battle. This is a pragmatic problem that threatens to undo all the hard work that many of you have put into establishing a route for advance requests in the case of dementia.

Then this question arises: How can we design those requests so that MAID providers will follow the wishes of individuals?

Fortunately, we asked these very same MAID providers to propose concrete policy suggestions that might alleviate the situation. Their recommendations were exceedingly thoughtful, and I want to take this opportunity to publicly thank them for their insights, which are distilled in our 2021 paper, which has been made available to the committee.

I'd like to end my testimony by highlighting five points that stand out as what I would consider minimal solutions to our common dilemma.

First, the advance request should include a list of specific circumstances for the provision of MAID, with extra emphasis on the term “specific”.

Periodic reaffirmation of the advance request would be the second suggestion, because continuity of one's wishes seems to hold particular sway with MAID providers.

Third is enumeration of why each specific circumstance constitutes intolerable suffering for the requester. MAID providers were generally receptive to the idea that individuals could determine for themselves what constituted suffering, but regularly commented that explicit discussion of the issue in the advance request would reinforce the idea that they were doing the right thing at the right time.

Fourth is discussion of the advance request with family and relevant designated decision-makers. Surprises at the time of provision puts MAID providers in an extremely awkward situation.

Fifth is a question asking requesters to be explicit about what they would want to happen if, at the time of provision, things don't go as expected—for example, if family members or the patients themselves object to the procedure.

As you prepare your report, I urge you to consider implementing these recommendations. Our data suggest that, in order to have advance requests do what they are intended to do, we need to carefully consider the reality that confronts the MAID providers. They already have the morally weighty job of providing MAID, and if this legislation becomes law, they will be asked to take on the additional challenge of providing MAID based on an advance request. The success of the entire program depends upon our designing the advance request so that everyone—patients, families and MAID providers alike—obtains the results we all want.

Thank you for your attention.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much, Professor.

Lastly, we'll hear from Dr. Jennifer Gibson.

You have the floor for five minutes.

[Dr. Jennifer Gibson, Associate Professor, Director of Joint Centre for Bioethics, University of Toronto, As an Individual]

Thank you so much, and thank you for the invitation to meet with you in this important study.

I am director of the University of Toronto's joint centre for bioethics and an associate professor in the Dalla Lana school of public health. However, this evening, I am speaking as an individual, drawing upon my disciplinary background in bioethics and health policy, and my experience as co-chair of the provincial-territorial expert advisory group on physician-assisted dying in 2015, and as chair of the advance request working group of the Council of Canadian Academies' expert panel on medical assistance in dying in 2018-19.

I've had the opportunity to listen to several testimonies by previous witnesses over the last week. In the next few minutes, I hope to build on this testimony and indeed that of my colleagues on the panel today, and offer the committee some points to consider in its deliberation about the potential role, application and conditions of advance requests for MAID.

A first point to consider is that, while advance requests for MAID may be relevant to persons with dementia, they're not relevant only to such persons. Discussions of advance requests for MAID often focus on dementia as the root cause and reason for a person's advance request. It is important, however, to distinguish between the grievous and irremediable medical condition that may lead someone to seek an advance request for MAID and the clinical circumstances that may result in the loss of their decision-making capacity. For some patients, dementia may be both a grievous and irremediable medical condition and the basis of their loss of capacity; however, this is not necessarily the case.

For example, consider an advance request for MAID from a person who is in active treatment for cancer or heart disease, with an uncertain prognosis, who is also at risk of a potentially life-limiting event, such as a stroke. Consider a person who has inherited the dominant gene for Huntington's disease or the gene for early Alzheimer's and will most certainly develop the disease in the future, but may be diagnosed with another grievous and irremediable condition in the meantime. Consider a person who has been living with Parkinson's disease for several years, knows that the end stage of the disease might be accompanied by dementia and wishes to plan for this possibility whilst they still have the capacity to do so.

It is important that a study of advance requests take this broader range of circumstances into account.

[The Joint Chair, Hon. Yonah Martin]

I'm sorry to interrupt, Dr. Gibson.

Would you kindly move your mike up a little bit and also slow down for our translators?

Thank you very much.

[Dr. Jennifer Gibson]

I'm happy to. Thank you.

A second point to consider is that persons with dementia can be supported to live with dignity. There is much work to be done to strengthen and create conditions for this. However, for some persons, regardless of these conditions, advanced dementia may nevertheless be experienced as a source of intolerable suffering.

As you have heard from other witnesses, recent public opinion surveys in Canada show strong support for advance requests for MAID. Some witnesses have attributed this to a general fear of dementia and institutionalized care, to limited accessibility of palliative care services or to embedded ageism and ableism within society. The worry is that advance requests for MAID may tend to exacerbate and reinforce systemic barriers and societal attitudes that render persons with dementia, particularly seniors, vulnerable as a group, and to displace needed efforts to provide dignity-enabling care for all persons living with dementia.

However, a focus on vulnerable groups as such tends to occlude the experience of individuals in the unique circumstances of their lives, including the impact that illness may have on their personal identity, their fundamental values and their ability to engage in the world and the projects that matter to them and with the people they care about. A study of advance requests must consider both the vulnerability of groups and of individuals without collapsing one into the other.

A final point to consider is that, as several witnesses before me have underlined, advance requests for MAID are complex undertakings with known uncertainties; however, there may be ways, as Dr. Reiner has pointed out, to reduce the complexity and narrow the uncertainty gaps.

Advance requests for MAID raise important challenges about, first, the clarity with which a person has described their circumstances under which their advance request should be enacted; second, the concordance of a person's current situation with the circumstances outlined in that advance request; and third, the extent to which the patient's wishes are known and understood by the care team, the substitute decision-maker and family members. No piece of legislation alone can do this, and indeed, our previous experience with MAID in Canada underlines that multiple actors have a role to play.

As this special joint committee study proceeds, one offering you might serve all of us with is not only to be able to provide recommendations regarding what legislation may look like, but a broad canvas of what you've heard through each of these meetings that may be able to foster directions for the fuller range of actors who may have a role to play in its implementation and continuing evolution.

I look forward to exploring these points further with you and with my panel colleagues.

Thank you.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much.

Thank you to all our witnesses.

We will now move into questions from our MPs, and we will begin with Dr. Ellis.

Dr. Ellis, you have the floor for five minutes.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you very much, Chair.

Thank you to our witnesses for being here.

Through you, Chair, my first question will be for Dr. Perrot, if I may.

You talked about frequent reassessments or, in Professor Reiner's words, periodic reaffirmations. Can you give us a sense of how often those would be better suited to be done?

[Dr. Chantal Perrot]

I think Professor Reiner and I were talking about two different things. When I see patients who would like an advance request, but because they're not available we can't have them, I will meet with them and then I'll touch base with them every few months just to confirm their interest in MAID and to update my assessment. I think he was talking about reaffirming an advance request periodically, every three to five years or something like that, which I certainly agree with.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Just to be clear, Dr. Perrot, you believe that if someone has a desire for MAID, their desire should be revisited every two or three months.

[Dr. Chantal Perrot]

No, not in general. This is for patients who are not ready to complete the assessment. If someone has completed the assessment, they want MAID and they're prepared to set a date for MAID, then we do that. That date can be days, weeks or even months down the road. However, if someone's not ready to have the assessment completed, then I do what is called a “rolling” assessment. It's done over time. Sometimes that is spread out over a couple of years, even.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Okay. I understand very clearly.

Through you, Chair, I'll once again go to Dr. Perrot, if I may.

Do you believe that, in the words of Professor Reiner, there should be reaffirmations as we go forward—i.e., “Hey, you know what? Even if you say, yes, you want MAID, are you ready to continue with that?” Is that an important part of this for you?

[Dr. Chantal Perrot]

It's certainly an important part for advance directives or advance requests. I think anybody who writes an advance directive, which one can do now, should be reaffirmed periodically, three to five years or something like that, because then you see the consistency over time of somebody's wishes. If you can look at someone's advance directives over a period of five, 10, 15 or 20 years and you can see that their wishes are consistent over that time, as a clinician I would feel much more comfortable providing MAID to somebody whose wishes I knew were consistent over their lifetime as opposed to somebody whose wishes were suddenly changed with a more recent advance directive that had never previously mentioned something like MAID.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Understood. Thank you.

Through you, Chair, I'll once again go to Dr. Perrot.

As we get closer to that time, let's say you've established a relationship with that patient and you realize they have a dementing illness. Would it then be important to increase the frequency of those reassessments?

[Dr. Chantal Perrot]

Yes, absolutely. Those would be reassessments as a MAID provider for somebody who's actively seeking MAID, certainly. As well, if somebody has an advance directive, then that should be affirmed periodically in the course of their early dementia. At some point they'll lose the capacity to understand what the advance directive is, and at that point it should be stopped.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Would it be on a case-by-case basis, or do you believe there are more general ideas that could be implemented here with respect to these aspects?

[Dr. Chantal Perrot]

I think any assessment should be done on a case-by-case basis. There should be a certain amount of flexibility built into the assessment process, but for something like advance directives for MAID, and advance directives in general, I think they should be reaffirmed or rewritten periodically. That should be written into whatever rules or regulations come out with advance requests.

I don't think a clinician could reasonably be expected to act on an advance request that was written 25 years ago and was never revisited or reaffirmed. That affirmation could be as simple as adding a line to an advance directive with a statement saying, “I confirm the wishes above of this advance directive”. That could be done periodically. I do think an advance directive or an advance request for MAID has to be reaffirmed periodically.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you for that, Dr. Perrot.

Certainly, that makes it very difficult, for those of us trying to create legislation around this, to understand those benchmarks and barriers that need to be in place. I thank you for your comments with respect to that.

In my last 30 seconds, through you, Chair, I have a question for Professor Reiner.

Do you have any comments specifically around that?

[Prof. Peter Reiner]

Yes. I guess what I would say is that it's really in the interest of the patients, the requesters, to reaffirm as often as is appropriate, given their relationship with the provider, to ensure that the consistency of their views is heard, because that makes it more likely that they will get the result they asked for.