Medical Assistance in Dying Committee on Oct. 28th, 2022

[Dr. Jude Poirier]

A biological shift happens in the brain, and it affects every part of daily life, including judgment, freedom of thought and spatial perception of oneself. Basically, the brain cells die. You certainly can't compare a person's condition at that stage to what it was when they had 20, 30 or 40% more brain cells.

Alzheimer's is a neurodegenerative disease. That's why I said in my opening remarks that I didn't want us to discuss psychiatric illness at all. That's a completely different situation. I would not have the same sort of stance I had this morning.

Alzheimer's is an incurable disease; the cells die. If you do a CT scan, you can actually see the dead cells, which are shrivelled up.

[Luc Thériault, Bloc, Montcalm, QC]

Would one be required to administer medical assistance in dying anyway? Are there peaceful ways or methods of doing it?

[Dr. Jude Poirier]

Yes. As I told you, the scales and the method exist. After that, it's just a matter of carrying out what the individual requested in advance.

[Luc Thériault, Bloc, Montcalm, QC]

So it's more of a reflex than patients refusing?

[Dr. Jude Poirier]

I wouldn't describe it that way, but that's pretty much what it suggests.

[The Joint Chair, Hon. Marie-Françoise Mégie]

Thank you very much, Mr. Thériault.

Mr. MacGregor, you have the floor for two minutes.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you very much, Madam Chair.

Dr. Upshur, I'll turn to you.

I don't have a lot of time here, but in a previous answer you talked about our committee making a recommendation to the CIHR to close the knowledge gaps. Do you want to expand on that a bit and also maybe broaden your answer to include other recommendations you'd like to see this committee make in its final report to the federal government? Do you want to take some time to talk about that in the minute and a half I have left?

[Dr. Ross Upshur]

Thank you. I appreciate that.

Once again, I'll direct the committee back to the CCA report, which very thoroughly outlines almost every aspect of the discussion today and where the uncertainties lie.

Where there are uncertainties.... As you know, we have to live with a certain amount of uncertainty, but a certain amount of uncertainty can be reduced through getting the priorities of the questions and funding the research to close those gaps.

There are at least 15 different recommendations, because there's very little known. The scant evidence we have, which Professor Poirier has mentioned, is a handful of cases from the Netherlands. We've conditioned a lot about Alzheimer's and certain forms of dementia, but those aren't the only circumstances in which advance requests for MAID will take place.

I would make a recommendation that there be ring-fenced funding. I sit on one of the institute advisory boards. There are mechanisms that exist to get funding available to trigger research; plus, provincial research institutes can provide that funding.

To Professor Poirier's points, he has scales, but how valid are they? What are the sensitivity, specificity, and positive and negative predictive value? As we know from living through COVID, testing has thresholds. Here, the mistakes that we make on judging and acting on scales are irrevocable. There's quite a lot of existential weight to the decisions that are being made.

What I would like to make a really high priority is support for substitute decision-makers across the spectrum of care. Dr. Chung has spoken about the caregiving burden, not just for dementia and Alzheimer's, but for any older adult with multiple concurrent conditions. We have a crisis in elder care in Canada right now.

MAID advance requests are a small tip of an iceberg of a larger social problem. We have to ask ourselves and problematize why it is that people fear dementia so much. As everybody has spoken about, they've witnessed things they find horrifying, but why is it horrifying? Why have we created the conditions where care for dementia is so terrifying?

It's something that we created. We can rewrite that narrative through investment in care and investment in caregiver support. This kind of fearful, negative narrative that I'm hearing about is not necessarily inevitable. As Professor Poirier has said, Alzheimer's is a neurodegenerative, irreversible condition, but we can do an awful lot with social support to make this narrative a lot less despairing than what we've heard.

Thank you.

[The Joint Chair, Hon. Marie-Françoise Mégie]

Thank you very much, Dr. Upshur.

I'd like to ask you to send the clerk the Council of Canadian Academies or CCA report, if you could, so that it can be submitted to the committee.

I will now turn the chair over to my colleague Mr. Garneau.

[Dr. Ross Upshur]

If I may I speak to that, it's the CCA report that was commissioned by the Minister of Justice and the Minister of Health. This is a report that was commissioned by the Canadian government to examine the issues of advance requests for medical assistance in dying. It's a 240-page report.

You should have it, and you should read it. It covers off all of the issues we've been talking about today.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Upshur. We do have access to it.

With that, I'd like to thank our panellists for this morning. Dr. Chung, Dr. Poirier and Dr. Upshur, thank you for bringing your expertise to bear on this very important but difficult subject. We appreciate your giving your time to us.

We'll suspend very briefly. Don't go away, committee members. We're going to start very quickly with our second panel.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Good morning to our second group of panellists.

We have the pleasure of welcoming Dr. Jonas-Sébastien Beaudry, associate professor at McGill University; Dr. Marcia Sokolowski, psychologist and philosopher; and Dr. Ellen Wiebe, medical doctor. All are here by video conference.

We'll get on with it right away.

As you know, the procedure is that you will each have five minutes to make opening remarks, and that will be followed by questions.

If you're ready, Dr. Beaudry, you may begin. You have five minutes.

[Dr. Jonas-Sébastien Beaudry, Associate Professor, McGill University, As an Individual]

Thank you very much.

I just want to express two reservations regarding the legalizing of advance directives for medical assistance in dying.

My first point is a reminder of the basic legal and moral principle that when people become unable to make decisions, such as financial or health care decisions, our law sets out protective regimes to ensure that they do not harm themselves. An important feature of such regimes is that decisions must be taken in the best interests of the person. They must be taken to foster that person's well-being. We have to provide that person with the care that is most respectful of their residual agency and most beneficial to their well-being.

At first sight, it would appear that respecting the instructions that someone gave in the past to treat them in the future looks respectful of their autonomy. However, identity, desires and needs change over time. While it may well be the case that respecting past instructions is a way to respect autonomy in many contexts, it's not obvious that it is always the case, especially when people undergo important cognitive changes. When that happens, the person may have experiences and desires that are different from those they had in the past. For instance, they have never experienced what it is to live a life with fewer cognitive capacities.

To illustrate, let's imagine a 75-year-old patient with dementia called John, who is no longer able to make health care decisions. My first point is that decisions made on his behalf should only be made for his benefit.

One may assume that, of course, John without dementia, when he was, say, 50 years old, would care about his own future self and know his future self better than anyone. That would put him in a great position to say what's best for John at 75 years old, but we could suggest that it's not so obvious. For one thing, John may not make a decision in the best interests of his older self. He may have the best interests of someone else in mind.

For instance, he might not want to be a burden on an aging spouse or other members of his family, or he might have his own interests right now in mind rather than the interests of his older, sick self. For example, he might imagine his future self bedridden and highly dependent and feel shame at the thought that this is how he would end his life and how the people he cares about would last see him.

Perhaps this evaluation seems reasonable to many people. However, such an evaluation may potentially share discriminatory beliefs about the quality of life of people with illnesses and disabilities, and about whether their lives are worth living at all. Many people live happy lives with various significant medical conditions or a high level of dependency. However, if John or anyone within his family or health care team doesn't think so because of ableist generalizations, John at 75 years old would become the victim of ableist or ageist stereotypes.

The point I'm making is that, even if you personally believe that John ought to die because you personally would not like to live if you were in that situation, we should not end John's life because you feel that way. We should do what is best for John. We should care for the patient before us, and that is John with advanced dementia at age 75. It doesn't mean that John's past preferences are not relevant. The holistic assessment of what is in his best interest may include his past wishes and preferences.

My first point is that giving the last word to the former self of a patient, sometimes a cognitively and experientially distant self, is not necessarily always respectful and beneficent towards the patient in their current state, especially if a long time has passed. If new experiences occur that the person never experienced before, if new relationships of care and dependency occur that did not exist before, if new forms of suffering and new forms of resiliency and joy are experienced that weren't experienced before, and if significant cognitive changes have occurred in the person, it makes that close connectedness between past and present selves more and more questionable, and so would be a law giving control over the fate of someone with a cognitive disability to a significantly remote past self.

If it is true that we must make a new, holistic assessment of the patient's needs, not just indiscriminately apply their past wishes, my second point is that it seems very difficult, if not impossible, to detect a kind of suffering that would justify ending a patient's life when patients themselves don't have enough cognitive capacities to express their wish to die. If the state can stay away from endorsing conceptions of lives not worth living, it should.

That second point would apply both to non-voluntary euthanasia and to an advance request law, because for an advance request to be activated, doctors would still need to be able to identify that the patient, John at 75 years old with dementia, has indeed attained the kind of suffering that would justify triggering MAID according to the patient's past instructions.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Dr. Beaudry.

We'll now go to Dr. Sokolowski for five minutes.

[Dr. Marcia Sokolowski, Psychologist and Philosopher, As an Individual]

Thank you very much.

First, I wish to extend my gratitude to the chairs and the joint committee for the honour of being invited here today to discuss the extremely important topic of the use of advance directives pertaining to MAID.

By way of introduction, I'm the senior ethicist at Baycrest Health Sciences. I have a status-only position as assistant professor in the department of medicine at the University of Toronto, and I'm a fellow of Ben-Gurion University in Israel. As well, I'm a member of the MAiDHouse advisory council. However, my comments are mine alone, and I am not representing any of these organizations.

My comments are also informed by many years of being a clinical psychologist, philosopher and ethicist within health care organizations with much experience in the use of advance directives with the Alzheimer's/dementia population.

I have chaired many MAID committees and provided ethics oversight to ongoing cases. My publications include my doctoral thesis in philosophy on this topic, and a book published by Springer International in 2018 on the topic of dementia and the use of advance directives.

My academic and clinical experience portrays a range of significant concerns that arise out of the use of advance directives—and I want to say this point with distinction here—at least in the terms of how they are currently being used with the Alzheimer's/dementia population. The main question I pose is whether legalizing advance requests for MAID for those who face dementia is morally justifiable.

However, this doesn't just apply to situations where MAID is concerned, but applies equally to situations where treatments are withdrawn. Later, I will discuss suggestions to alter the conceptualization and use of advance directives in order to enhance the level and moral justification of their use.

As a number of panellists have already discussed, the dominant conception about Alzheimer's is that it's a disease of horrific tragedy and necessarily leads to loss of personhood. At least in North America, this is a very prominent conceptualization. The negative stereotype of Alzheimer's is often at the root of why people write directives in the first place, which state their desires to forgo treatment if and when dementia does strike. These directives can be especially problematic if the person with dementia is generally happy.

We also may not possess the requisite imagination or learned experience necessary to be good predictors of what we may or may not want in future situations when we offer our advance directive. Our values and our beliefs may radically change over time, and our frames of reference may alter.

Substitute decision-makers, SDMs, might also be privileging particular kinds of interest over others, not necessarily the patient's interests. SDMs do not always follow even relatively clearly expressed treatment wishes, for a variety of reasons, as my research has shown. It's problematic, therefore, to assume that having a substitute decision-maker to interpret the directive and provide the requisite informed consent generally adds any merit at all.

There is potentially tremendous subjectivity, variation and inconsistency occurring with regard to conceptualization of the advance directive in the first place, how its contents get interpreted, its intended and actual use, and how and whether it gets applied.

I also learned in my work that it would be a mistake to assume that the author of the directive behaves in a more predictable fashion. It would not be exceptional for him or her to neither expect nor even want the directive to be perceived as definitive. Rarely, however, are these expectations or wishes known to the substitute decision-maker, and even if they were, they would not necessarily prove to be the current expectations or wishes of the person with dementia.

To increase the moral nature of advance directives, not only should these concerns be rectified to the point possible, but authors of advance directives ought to be educated about the downfalls as well as the strengths of having an advance directive in order to be better informed when making a decision about whether or not an advance directive is in their best clinical interest in the long run.

I have some clinical and policy recommendations.

One, an advance directive ought to be explicitly considered as only one piece of information among many about a person's intentions and/or preferences. It is not the sole determinant of settling any medical treatment decisions.

Two, because an advance directive document is, at best, a weak example of the principle of autonomy, treatment wishes in any advance directive should not be construed as equivalent to or having the same self-determination status as treatment wishes made in real time by the patients.

Three, many people with dementia will still be capable of holding values, wishes and interests that matter to them. In this view, they ought to be considered to be at least borderline or partially autonomous, and medical treatment decisions should be made that cohere with them whenever possible.

Four, a directive that's very recent and doesn't seem to have been made obsolete by changes in the patient's statements, attitudes or responses to treatment can be treated simply as a current expression of their wishes. Then, in some imprecise but significant way, its status as a current expression—hence to be taken as an exercise of autonomy currently—degrades quickly with the passage of time or the onset of attitudes or behaviour—i.e., general happiness—in tension with the content or presuppositions of the advance directive.

[The Joint Chair, Liberal, Marc Garneau]

Doctor, I'm going to have to ask you to wrap up. You're past your time.

[Dr. Marcia Sokolowski]

Thank you very much.

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

We'll now go to Dr. Ellen Wiebe for five minutes.

[Dr. Ellen Wiebe, Medical Doctor, As an Individual]

Thank you so much for allowing me to talk about a subject I have thought so much about, talked so much about and am so interested in.

My experience is in assessing almost 800 Canadians for medical assistance in dying, and providing for over half of those. I was a family doctor for over 30 years, so I saw lots of dementia patients at that point. I'm a researcher and have done a lot of research on MAID, including on advance requests.

I'm going to focus the first part of my talk on the paper I sent you. I just want to make a few highlights about this.

First of all, the majority of Canadians want advance requests. A number of other researchers have found this. In our study, we asked about specific situations, as in, “Would you want to be able to have an advance request in particular situations?” Eighty-six per cent of our participants wanted it, so we're going to have advance requests. If we don't get it in 2023, we'll get it the next year, or we'll get it with the next Parliament, but we'll get it because we live in a democracy, and 86% of Canadians want it.

The specific things we talked about in our study are a loss of personal dignity, including being unable to toilet; a loss of freedom, like being kept in a locked facility; a loss of the ability to recognize family members; a loss of the ability to keep memories even for a few minutes; and a loss of the ability to control behaviour, as in becoming aggressive and inappropriate.

Now, the second really important finding of our paper was to see a gap between what people wanted and what MAID providers were willing to provide. This gap, depending on all these different specific situations, varied between 19% and 44%. Just because you make an amendment to our law, it doesn't mean you'll be able to have an advance request that is acted upon. We worked hard as a research team to look at what would make it work. We, of course, asked the MAID providers in our study and discussed it.

What would help most would be a list of very specific circumstances that are concrete in nature; readily visible to practitioners, to family members and to caregivers; stable—in dementia, it's very common for people to have, for example, sundowning, where they are fine in the morning and not fine in the afternoon—and requiring minimal interpretive judgment by the provider.

We have no experience in advance directives, but we have experience in waivers of final consent. We are finding that, first of all, patients love them. They are so grateful when they find out they don't have to worry about losing capacity before the date they've chosen for MAID. They are so relieved, and I know this is going to happen when we get our advance requests.

The other thing is that the providers actually didn't have any problem providing for the people who did lose.... In my case, I have signed many waivers of final consent. I've only used them twice, and in both cases it was just so clear. This is different, however, because I knew these people. I had assessed them. I had seen or talked to them recently. That's not the same as meeting somebody you've never seen before in a state of advanced dementia when you have to interpret everything.

What we are used to doing—and this comes to what you've just heard from the others—is taking each case separately and looking at the entire picture. I would want to see somebody who not only wrote their advance directives but had told others in the process of advancing disease that they wanted it.

On the question about suffering, yes, it's a big problem. If I were to see some lovely demented old lady playing with her dolls and looking perfectly happy, would I be able to end her life? I don't think so, no matter what she had said in the past.

So you're stuck. All you can do as a parliamentary committee is recommend an amendment to the law, and the law has to have the word “specific” in it, so that it is clear that an advance request is not a general one. It must be very specific. Each case still has to be assessed separately, which is exactly what we do for every MAID case when we look at the entire life of a patient and not just a few specific criteria.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Wiebe.

We will now go to questions.

Senator Mégie, you have the chair.

[The Joint Chair, Hon. Marie-Françoise Mégie]

Thank you, Mr. Chair.

Mr. Ellis will be our first speaker.

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

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

Thank you very much, Madam Chair, and thank you to the witnesses for appearing.

Dr. Beaudry, you talked a little bit about the protection of people against self-harm and so on. One of the things that came up in one of our earlier panels was some research around the concept of suffering and how difficult that is to detect. Could you speak a bit about that, please?

[Dr. Jonas-Sébastien Beaudry]

Sure. Thank you for the question.

I think a key issue is that suffering is highly subjective. It's not an objective benchmark. Severe pain can be more medically objective, but suffering is not, so without the patient's input, it's simply a myth that we will not make a value-laden judgment about which life is worth living or not.

Consider, in the province of Quebec, Quebec's Bill 38, which proposes to amend Quebec's act respecting end-of-life care to include advance directives. It says that the advance request must describe in detail the physical or psychological suffering that cannot be relieved in a way that the patient would find tolerable when they write the request. Then, a monitoring system would be put in place so that when the patient shows signs of that suffering, the MAID process can be started.

The problem is that, to come back to the example I gave before, if John at age 50 is able to consent and explain that he's experiencing an intolerable suffering such that death would be preferable in his mind, that's it. Doctors, judges and legislators don't have to ask the absolutely unsolvable existential question of what is a life worth continuing. They just need to respect the fact that John made his own existential choice that it is not worth living. However, the notion of intolerable suffering cannot just be transposed onto someone who cannot make this choice, including John at age 75 with advanced dementia. That is because suffering is a complex, subjective experience.

We can measure pain. We can treat pain, and ultimately we can eliminate pain completely if nothing else works through deep sedation, but we are not talking about a response to pain. MAID has been designed and is used primarily as a response to existential suffering such as the loss of ability to engage in meaningful activities, the loss of ability to perform activities of daily living, or other fears that have to do with hygiene.

Bill 38 in Quebec says that there is a special kind of suffering. That special kind of suffering justifies MAID or euthanasia, and patients can list that specific type of suffering on their advance request. Now, the point I'm making is that I am not clear on what that suffering is, nor is the Quebec bar, which produced a memorandum last summer stating that suffering is a subjective notion, not an objective standard.

The Quebec bar's working group on MAID said that they were wondering what Bill 38 meant by this “objectifiable” kind of suffering that is observable by a doctor, the way doctors observe the symptoms of physiological dysfunctions and diseases. Presumably it means something like “objective” or “objectively verifiable”, but subjectively intolerable suffering that is worse than continuing one's existence does not seem to be objectively verifiable. There's nothing objectively verifiable about the intensely personal leap someone takes above that abyss of disagreements about the value of life, when they move from experiencing specific social and physical issues on the one hand to the decision—

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

Dr. Beaudry, I'd like to interrupt you there. I have about a minute left. Thank you for that. I appreciate it.

Dr. Sokolowski, you talked about the substitute decision-maker not having merit in this particular process. Correct me if I'm wrong, but to me the difficulty we're coming to now is with a patient who has no capacity to make decisions on their own. Who's going to decide—a physician or a substitute decision-maker? That becomes very difficult.

We have about 30 seconds. Thank you.

[Dr. Marcia Sokolowski]

I think substitute decision-makers can indeed have a lot of merit. I think what's problematic is that often they don't because they're not up to date in terms of what the patient has expressed in a written or oral directive.

I think that advance care planning is a better way to go, because with advance care planning, at least the wishes and values of the patient are updated, so to speak, on a pretty regular basis so that the substitute decision-maker can really understand the values, attitudes, beliefs, specific requirements and wishes of the person.