Evidence of meeting #23 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 disease.

A video is available from Parliament.

On the agenda

MPs speaking

Also speaking

Alice Maria Chung  Clinical Associate Professor, As an Individual
Joint Clerk of the Committee  Mr. Wassim Bouanani
Jude Poirier  Full professor of Medicine and Psychiatry, McGill University, Centre for Studies in the Prevention of Alzheimer’s Disease, As an Individual
Ross Upshur  Professor, Dalla Lana School of Public Health and Department of Family and Community Medicine, University of Toronto, As an Individual
Joint Chair  Hon. Marie-Françoise Mégie (Senator, Quebec (Rougemont), ISG)
Pamela Wallin  Senator, Saskatchewan, CSG
Jonas-Sébastien Beaudry  Associate Professor, McGill University, As an Individual
Marcia Sokolowski  Psychologist and Philosopher, As an Individual
Ellen Wiebe  Medical Doctor, As an Individual

9:35 a.m.

Senator, Saskatchewan, CSG

Pamela Wallin

Go ahead.

9:35 a.m.

Full professor of Medicine and Psychiatry, McGill University, Centre for Studies in the Prevention of Alzheimer’s Disease, As an Individual

Dr. Jude Poirier

No, that's my point. I'm not the only one.

9:35 a.m.

Liberal

The Joint Chair Liberal Marc Garneau

I'm sorry, Senator Wallin. The time is up.

We have Senator Mégie for three minutes.

9:35 a.m.

The Joint Chair Hon. Marie-Françoise Mégie

Thank you, Mr. Chair.

My first question is for Dr. Poirier.

Dr. Poirier, I'd like to talk about the families of your patients whose diagnosis is either genetic or sporadic. When you explain all this to them as well as you have to us today, how do they react? How do they see the future when you talk to them about medical assistance in dying? What kinds of questions do they ask you?

9:35 a.m.

Full professor of Medicine and Psychiatry, McGill University, Centre for Studies in the Prevention of Alzheimer’s Disease, As an Individual

Dr. Jude Poirier

You met Sandra Demontigny, who has an early and inherited form of Alzheimer's.

The terrible thing about this type of Alzheimer's is that if Ms. Demontigny's father had it at age 41, she will have it anywhere from age 39 to age 43. Moreover, if her son or daughter has the defective gene, he or she will have it at age 41, 42 or 43. These individuals have a time bomb inside them and they know when it's going to go off.

Sandra is a wonderful spokesperson for people with Alzheimer's. She tells us in her own words what to expect.

Unlike others, she's fortunate enough to know when the time bomb is going to go off. So she's already been able to make arrangements for her estate and finances, among other things. She also works very hard to educate people. Individuals with the common form of Alzheimer's don't know when the time bomb is going to go off, but they're sure it will go off.

We have some tools to help us determine the course of the disease based on genetics. So far, 75 genes have been identified as risk factors. We also know that there are several environmental risk factors. We're not in the same situation today as we were 10 years ago, because we know how the disease evolves.

Personally, I tell the children of people with Alzheimer's to think about what they want to tell their families and children, including their wishes once the risk is clear.

Today, the only missing piece of the puzzle is for these individuals to be able to give advance end-of-life directives. I work with 400 people a year, and I can say that they give advance directives for all other aspects of their lives.

We've been able to educate these individuals by giving them a way to manage the situation or take control of it, to some degree.

9:35 a.m.

The Joint Chair Hon. Marie-Françoise Mégie

Dr. Poirier, I have a second question for you.

Several witnesses, including Dr. Chung, have said that people can't predict what their quality of life will be. When a person has advanced dementia, they are certainly no longer able to say that they don't want to receive medical assistance in dying or that they are withdrawing consent. We know that. Yet many people are reluctant because the patient can't withdraw consent at the end of life.

In a few words, what can you tell us about this? Should we remove the requirement to ask the person at the end of their life what they want?

9:35 a.m.

Full professor of Medicine and Psychiatry, McGill University, Centre for Studies in the Prevention of Alzheimer’s Disease, As an Individual

Dr. Jude Poirier

That's right, because they're no longer in any condition to do so.

By the end of life, some areas of the brain have lost 70% of brain cells. For some individuals, it can be as much as 80%. The cells involved in making decisions are no longer active. So we can't ask these individuals to make decisions. It's a scientific reality.

9:35 a.m.

Liberal

The Joint Chair Liberal Marc Garneau

Thank you, Dr. Poirier.

We started the meeting five minutes late, but if everyone is disciplined, we have time for a second round of questions.

Senator Mégie, you may begin the second round of questions.

9:35 a.m.

The Joint Chair Hon. Marie-Françoise Mégie

Thank you, Mr. Chair.

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

9:35 a.m.

Conservative

Stephen Ellis Conservative Cumberland—Colchester, NS

Thank you very much, Chair.

Thank you to the witnesses for being here.

Dr. Chung, on the study you referenced with respect to patients and caregivers, could you submit that to the committee, please?

9:40 a.m.

Clinical Associate Professor, As an Individual

9:40 a.m.

Conservative

Stephen Ellis Conservative Cumberland—Colchester, NS

Thank you.

You talked about teaching capacity assessment to physicians. Can you comment briefly on how many physicians might be really good at it, and how many physicians actually are able to perform, in your experience, capacity assessments?

9:40 a.m.

Clinical Associate Professor, As an Individual

Dr. Alice Maria Chung

It's really a gradient, because physicians and health care workers in general do capacity assessments all the time. When you're giving someone medications or performing surgery you have to ask permission first.

Where it gets complex is when you have people with mental health issues or cognitive issues, which may affect it. Sometimes, even though I've been doing these now for 30 years, for some people I cannot say one way or the other, so the default setting is that they are capable unless they can be deemed incapable.

9:40 a.m.

Conservative

Stephen Ellis Conservative Cumberland—Colchester, NS

That's great. Thank you for that.

Dr. Upshur, you spoke a bit about the fact that physicians should not be the ones deciding how to proceed in cases that are, as you mentioned, complex. There are knowledge gaps and there are uncertainties. I guess that leaves the decision-making to a third party.

How can we ensure, then, that there's no coercion or duress? Certainly, even with the physicians on this panel we have seen that because of their personal involvement with, I think, both of their parents, it has become a very emotional issue. How do we understand, then, that the caregivers are to make a decision for a patient without their own feelings being part of that decision-making? Obviously, looking after someone with dementia is very difficult. It's very emotional. We have seen that today.

How do we ensure, then, that they are not deciding based on their own feelings?

9:40 a.m.

Professor, Dalla Lana School of Public Health and Department of Family and Community Medicine, University of Toronto, As an Individual

Dr. Ross Upshur

Thank you for the question.

I think I'll echo some of the comments made by Dr. Chung. It's one of the great uncertainties. I will direct members of the committee back to the CCA report, where we discuss in detail what needs and supports the substitute decision-makers and proxy decision-makers will need. We will not have a regimen like the one in the Netherlands, where the physician is the one who makes the assessment of the intolerable suffering and triggers the request for medical assistance in death. In Canada, it would have to come through the substitute decision-maker.

As I mentioned in my comments, we have done precious little through time to support substitute decision-makers and proxy decision-makers in making decisions in day-to-day care, let alone the weighty responsibility that it will be to trigger the initiation of medical assistance in death. We have a lot of work to do, and like many of the questions here.... Let's not wring our hands about how complex they are. Let's mobilize research resources and get answers to these questions so that we can...not eliminate the uncertainty, but actually close some of those uncertainties.

I would charge you, as a parliamentary committee, to direct the CIHR to invest resources in closing these knowledge gaps. They're considerable, and they're important. So long as there's a huge amount of uncertainty, there's going to be hand-wringing and anxiety. We need not suffer that when we're making decisions about medical assistance in death if we have the means and mechanisms to close those knowledge gaps.

Thank you.

9:40 a.m.

The Joint Chair Hon. Marie-Françoise Mégie

Thank you, Dr. Upshur.

Mr. Arseneault, you have the floor.

October 28th, 2022 / 9:40 a.m.

Liberal

René Arseneault Liberal Madawaska—Restigouche, NB

Thank you, Madam Co‑Chair.

I'd like to thank all the witnesses, who are really providing very fascinating testimony today.

Dr. Poirier, I can't tell you how much I've learned about Alzheimer's disease, as someone who is experiencing the same stress and pain as your colleague Dr. Chung. My father has Alzheimer's and my mother died under the same conditions as yours. She died of hunger and thirst because she could no longer swallow anything. Also, three of my great aunts and great uncles, who were siblings, died one after the other. This is of great concern to me personally.

Ms. Demontigny made a big impression on all the committee members this week. On Tuesday evening, she gave incredible testimony. She was confident and had all her wits about her, so she can make a decision as important as requesting medical assistance in dying when the time comes.

That brings me to ask you a question about the 1 to 5 or 1 to 30 scale that you mentioned to help determine when one might make such a decision. I'd like you to provide some guidance. How should we, as legislators, use that scale? For example, can one request medical assistance in dying when one is at 4 or 25?

9:45 a.m.

Full professor of Medicine and Psychiatry, McGill University, Centre for Studies in the Prevention of Alzheimer’s Disease, As an Individual

Dr. Jude Poirier

In research, we have that entire spectrum. We define illness in simple terms, based on three stages: mild, moderate and severe. In a slightly more specialized clinical environment, we have seven. Stages four and five are moderate. When the person with the illness reaches the severe stage, they lose their judgment. This is a critical point, the point at which, in my opinion, it happens. That's what the Netherlands experience has shown us. That's the critical point where it tends to happen.

I work with memory and judgment loss scales that go up to 70. So that moment might arrive at around 55. These scales exist. Certainly, it takes time and money to define the situation, and by that I mean levels of autonomy and intrinsic pain.

9:45 a.m.

Liberal

René Arseneault Liberal Madawaska—Restigouche, NB

I have less than 30 seconds left and I'd like to ask you the following question: What seems to be the consensus as to what people would like to see as the defining moment to request medical assistance in dying?

9:45 a.m.

Full professor of Medicine and Psychiatry, McGill University, Centre for Studies in the Prevention of Alzheimer’s Disease, As an Individual

Dr. Jude Poirier

I'm speaking from personal experience and I can't interpret that for everyone.

9:45 a.m.

Liberal

René Arseneault Liberal Madawaska—Restigouche, NB

Go ahead.

9:45 a.m.

Full professor of Medicine and Psychiatry, McGill University, Centre for Studies in the Prevention of Alzheimer’s Disease, As an Individual

Dr. Jude Poirier

When we see a clear and precise loss of judgment and a significant loss of autonomy, that's a signal.

9:45 a.m.

Liberal

René Arseneault Liberal Madawaska—Restigouche, NB

I have 15 seconds left.

I'd like to thank all the witnesses.

I don't have time to ask more questions, but Dr. Poirier, if you could send some information on the scales to our clerk, she can send it to all committee members. I would ask you to do that if you can.

I'd like to thank all of you.

9:45 a.m.

The Joint Chair Hon. Marie-Françoise Mégie

Thank you, Mr. Arseneault.

I will now turn the floor over to Luc Thériault for two minutes.

9:45 a.m.

Bloc

Luc Thériault Bloc Montcalm, QC

Dr. Poirier, we've heard from some witnesses that we must resist offering medical assistance in dying because there may be times during the course of the illness that, even if the person has given consent and made an advance request, they may resist, refuse or something like that when the time comes to receive that assistance.

What do you think about that, that part of it where there might be some resistance?