Evidence of meeting #6 for Medical Assistance in Dying in the 44th Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was request.
A video is available from Parliament.
8:25 p.m.
Senator, Quebec (Rougemont), ISG
Thank you.
Do I have enough time to ask Dr. McDonald a brief question?
8:25 p.m.
Senator, Quebec (Rougemont), ISG
Okay.
Dr. McDonald, could you briefly tell me where the palliative approach fits into the end-of-life context for a person with dementia?
I know that you work with people who have dementia.
8:25 p.m.
Associate Professor of Medicine and Family Medicine, Memorial University, As an Individual
I do.
Part of the end-of-life process is ensuring that patients are aware of what their options are and what they can choose from. It means understanding what their disease is, what they can expect from the disease, how that disease is going to progress, what kind of symptoms they're likely to experience and then, from the clinician's point of view, what can be offered to help with each of those symptoms.
That's why I said earlier that I think patients often don't know about medical aid in dying as an option. We know a lot about it because we're very invested in it and we're all here to talk about it, but the average patient—you'd be surprised—doesn't know that's even an option, and a lot of clinicians do not raise it. They wait until the patient has said the secret words about “this euthanasia thing”, and then they'll talk about it.
It's not informed consent when they don't have all the information they need to pick and choose what is right for them. People need time to think about all these options.
8:25 p.m.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Dr. MacDonald.
Senator Wallin, you have three minutes.
8:25 p.m.
Senator, Saskatchewan (Saskatchewan), CSG
Thank you very much.
I have a question for Dr. Downie, but first I'm going to ask her to clarify something I read in the record of our meetings. I think it was a question to a witness. Here it is.
the Supreme Court of Canada stated unequivocally three times in Carter that medical assistance in dying may be performed only when a patient clearly consents. [...] In the face of the pronouncement of the Supreme Court, do you believe that an advance directive can be a true expression of free and informed consent consistent with Carter?
That was the quote.
Could you clarify whether that was your interpretation of Carter in relation to advanced consent? Then I have a question about.... Well, just answer that, if you would, please.
8:25 p.m.
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
That's simply not true. That is not what the Supreme Court of Canada said.
The Supreme Court of Canada said that a prohibition is void if it prohibits somebody from accessing MAID who clearly consents. That is not the same thing as saying that MAID is permitted only when someone clearly consents. They answered the question they were asked, which was about people clearly consenting. They said that if you prevent people here who can clearly consent, you're breaching the charter. That says nothing about what the requirements need to be.
I heard that earlier today, actually, and I heard it from another witness. It's bizarre to me.
8:25 p.m.
Senator, Saskatchewan (Saskatchewan), CSG
Thank you for that clarification. I think it's extremely important. I know you have concerns about pre-diagnosis advance requests.
I have two quick points. One, once you're diagnosed, I guess people could challenge your competence. More importantly, wouldn't a history detailing an advance request and concerns about a prolonged life under intolerable suffering, by that person's definition, be helpful in assessing whether the post-diagnosis request was valid?
8:30 p.m.
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
Absolutely. I think the longer that you have conversations about what a person wants, the better situated you're going to be for understanding the request and, more importantly, the better the request is going to be.
What we don't want is the kind of situation that Dr. Ferrier mentioned, of somebody saying they don't want to be a vegetable. We can't work with that. It needs to be very clear. We need to understand the values and the meanings that are behind the requests.
8:30 p.m.
Senator, Saskatchewan (Saskatchewan), CSG
That was Dr. MacDonald's point about education.
8:30 p.m.
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
Absolutely. Yes. Over time, that is true.
Partly why I'm all in on it after a serious diagnosis and I might seem to be more lukewarm on pre-diagnosis is that I'm juggling. From a public policy perspective. I think it's absolutely defensible, but in fact we need to do it after diagnosis because of the reports that have been done, the public sentiment, the clinicians—all those.
From a personal philosophical perspective, I would see advance requests before; I think we can sort out those problems. However, I'm trying to navigate bringing to you what I think the best public policy arguments are at the moment, and there is a real reliance on the work of those prior committees and expert panels.
8:30 p.m.
Senator, Saskatchewan (Saskatchewan), CSG
Thank you.
Thank you for the clarification as well.
8:30 p.m.
Liberal
8:30 p.m.
Senator, Quebec (De Lorimier), PSG
Thank you, Mr. Chair.
My question will be for Dr. Downie.
We all agree that if we have advance requests, they should be in the case of an irremediable condition, and that should be well defined. What seems to be bugging some people is the concept of “intolerable suffering”. You say that when you lose capacity, sometimes you're not suffering in your new situation. Maybe we should say that it's an irremediable condition, which is, according to the person doing the advance request, an unacceptable irremediable condition. Wouldn't that be better than to refer to “intolerable suffering”?
8:30 p.m.
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
I think you could certainly conceptually make that argument. I think people may express concern that the sands are shifting. That's why I've tended to stick with the language of saying that it's for the person to decide what constitutes “intolerable suffering”, so then I might say from a public policy perspective that I would advance “intolerable suffering”.
From a philosophical perspective, I would absolutely agree with you: What are the conditions under which you are having control over what happens to you in the future when you are no longer capable and you think you want that life to end because the conditions are unacceptable?
8:30 p.m.
Senator, Quebec (De Lorimier), PSG
Behind it will be the principles of autonomy and the right to dignity—
8:30 p.m.
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
Yes.
8:30 p.m.
Senator, Quebec (De Lorimier), PSG
—instead of removing “intolerable suffering”. Some people are completely at stage 7, but they are not suffering. They are no longer the person they were, but they are not necessarily suffering, according to those who observe them.
8:30 p.m.
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
Yes. I think with the end stage you can still say they're suffering according to their conception of suffering, because it would be an existential suffering.
I think the situation that makes your case would probably be unconsciousness. When you're truly unconscious, it's probably harder to make the case that you are suffering, but you would say, “Those are conditions under which I consider continued existence to be unacceptable, and so I am requesting MAID.”
8:30 p.m.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you.
I'm now going to give the floor to Senator Martin.
Senator Martin, you have three minutes.
8:30 p.m.
The Joint Chair Hon. Yonah Martin
Thank you. My question is for Dr. Ferrier.
My colleague was talking about intolerable suffering. My mother suffered from dementia and was in fear when she was having to get surgery for her fractured hip. I just wanted her to not suffer and to end her misery. It was from my own position of making a judgment, and yet she bounced back so quickly, and at every stage I saw her real joie de vivre.
Could you speak from your experience regarding people living with dementia and suffering?
8:30 p.m.
Physician, Division of Geriatric Medicine, McGill University Health Centre, As an Individual
Yes. Thank you for that question.
I think people with dementia suffer if they're treated badly. It's like everyone. If you're badly treated, you suffer, and if you are cared for, surrounded by affection and surrounded by everything you need, then generally you don't. There are symptoms of dementia, such as agitation and so on, that we can generally manage. In some extreme cases, we cannot.
A lot of things have been said during this panel about not wanting to be that person with dementia. I think there's a lot of stigma there. People are saying, “My suffering now is to think of myself as being in the position of those people in the nursing homes, and I don't want to be that person.” That makes me very uncomfortable.
I don't see my patients suffer; I've seen lots and lots of patients with dementia, and it's very rare. Sure, you go through a bad time, and sure, hips we fix because it gets people walking again. We don't always send people to the emergency room from a nursing home. If they have a fever, we might treat them in the nursing home even if they die sooner of whatever infection they have, because the stress of going to the emergency room would be terrible for that person. It would make them more confused. They would maybe spend hours on a stretcher.
There are many things that would cause suffering to a person with dementia, but we don't have to do all those things. We do the things that we really think are in their best interests and that lead to their comfort. We're not going to do a triple bypass. We're not going to do many things that a person who has normal cognition could go through much more easily because they understand what's happening.
I think the concept of suffering is very subjective. It troubles me to hear people talk about my patients in many of the terms that have been used tonight about how “I don't want to be like that”.
8:35 p.m.
Liberal
The Joint Chair Liberal Marc Garneau
You had 30 seconds, but thank you, Senator Martin.
Thank you to all the panellists this evening for your expertise, for your testimony and for answering our questions. We very much appreciate it, Professor Downie, Dr. Ferrier and Dr. MacDonald. It's a late hour for some of you on the east coast, so we very much appreciate that you took the time to be with us this evening. Your contributions are very important to our deliberations.
Thank you.
With that, we'll suspend momentarily and get ready for the next panel. Thank you.