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

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

Thank you, Dr. Sokolowski and Mr. Ellis.

I will now give the floor to Dr. Fry for five minutes.

[Hedy Fry, Liberal, Vancouver Centre, BC]

Thank you very much, Chair.

This is such a difficult issue. Here we are, talking about the legality, what lawyers think, what caregivers think, what families feel and think. At the end of the day, this is all about that individual person who may or may not be trapped, as we heard from Dr. Poirier, in a place where they are no longer able to make these kinds of decisions because so many of their brain cells have died. We need to stop using legal language and using a whole bunch of lingo for what, in effect, is a subjective and very important decision.

I was very moved by Dr. Poirier's testimony when he basically said that his mother begged him during the very rare times she was lucid and said that she didn't want to continue. Yet she had caregivers whose own culture and morality said that she was happy and she should continue because she was being made comfortable by them. That is very sad. I can imagine what she must, in her lucid moments, have been thinking.

Advance requests and advance directives have a certain importance. When the person has cognitive function and is able to make decisions, I think they tell us what their morality is, what their own sense of self is. We learn things from them, and as Dr. Wiebe said, you know the patient over the long term; you know who they are. So when they get to a point where they're unable to make the kinds of decisions that they would have made, you know what that person believed in, what their morality was, what their values were, what they were thinking, how they valued certain things. Making that decision needs to be done on an ongoing, long-term basis.

This is a question. I'm not making a speech, but I'm seeing the conundrum that all of us face. To say that we can make a clear, legal statement that's going to make a decision to be for everybody doesn't make any sense. This is not a generic issue. It's based on the individual person and what you knew about them before they moved into the area where they are no longer in control or people are making decisions for them with regard to advance directives.

I think we need to start going back to what the Supreme Court originally said, which was that this is about subjective decision-making by an individual person, and that may differ with different people—

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

I'm sorry to interrupt you, Dr. Fry, but could you please adjust your microphone?

[Hedy Fry, Liberal, Vancouver Centre, BC]

Is it better? All right.

I'm making this kind of statement because I do think that we are thinking as clinicians, we are thinking as family and we are thinking as lawyers about all of these things. We're not thinking about what that person is in the lucid moments, the few lucid moments—we may not even be able to talk to them in those lucid moments—when they definitely say, “I don't want to be here anymore” or “I do want to be here; I do want to continue.”

We have a really difficult problem. I think that if we try to parse this into legal constructs or into families who want their mom with them for a longer period of time and go, “Oh look, Mom looks happy. She's playing with dolls. Isn't she great?”.... These are the kinds of things that we don't want to make sure the Government of Canada or the people of Canada decide for an individual human being: what their end of life should be like and what their choices are.

I don't have an answer. We're asking you guys to come and tell us because we were hoping someone among you would give us an aha moment, but at the end of the day, I don't know that this is all about us. I know that it is about that person, that individual specific person.

We heard from Dr. Poirier. We heard from Dr. Chung—

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

I'm sorry to interrupt you, Dr. Fry, but I must ask that you ask your question, because you only have about 50 seconds left.

[Hedy Fry, Liberal, Vancouver Centre, BC]

I don't have a question, Senator Mégie. I am just trying to tell you that I am still not sure what I'm hearing from everyone. I'm trying to weigh everything that everybody is saying, other than a person who is going through this and who has lucid moments and can come and tell us, “Please do not judge me from the outside or from all of the other things, legal and other, that you believe in. Let me tell you what I originally—when I knew who I was—wanted. That essential me may not have changed inside. My brain cells may have gone, but that essential me is still there. Respect that essential me.”

That's all I wanted to say. I am finding this a very difficult decision panel. I am finding this whole issue extremely difficult to think about because we are all deciding for people.

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

Your time is up, Dr. Fry.

Next, we go to Luc Thériault for five minutes.

[Luc Thériault, Bloc, Montcalm, QC]

When it comes to decisions as personal as our own death, it seems to me that the Crown has no right to decide on behalf of the patient, since it's not the Crown's life that's at stake. The Crown's role is to create the ideal conditions for freedom of choice. Since the law guarantees the principle of self-determination from our birth to our death, how can we disregard the principle of self-determination at the most personal time of life, namely the end? It's a fundamental principle.

No one has the right either to make a decision about one person's quality of life by comparing it to another's quality of life. That's another principle. So it's up to the individual, the patient, alone to ultimately make decisions about their quality of life, about what they consider to be tolerable.

Sandra Demontigny told us that she would cut her life short if we as lawmakers did not allow her to do it. This is, in fact, the spirit of Carter and of Justice Baudouin's ruling: it violates the right to life because people will tend to want to cut their lives short rather than stay alive as long as they can. I don't know anyone suffering from an illness who doesn't want to stay alive as long as they can.

So what these individuals are asking of all Canadians is that we guarantee that, on the morning they wake up and decide that life is no longer tolerable, we will let them seek help to pass on. It seems to me that it's a perfectly acceptable moral contract. It is a kind, benevolent contract, because you can't be benevolent if you're taking away someone's autonomy. These are the principles that are ultimately guiding my understanding of this debate.

What hurts in the debate we're having is the fact that a person may lose their capacity to give consent in a degenerative process. However, Bill C‑7 removed the final consent requirement for those in the terminal phase of life. It's all very clear, so I don't see why we wouldn't respect a person's final wishes. We must strive to create the ideal conditions for ensuring respect for those wishes.

With this in mind, Dr. Wiebe, what can we do to ensure that those wishes are respected and that we can somehow cast aside, circumvent or dismiss the doubts we're seeing surface this morning?

[Dr. Ellen Wiebe]

Thank you.

You can't ensure that. That's what I was trying to say. It's not possible. You need to recommend an amendment to the law that allows for advance requests, because that's what Canadians want. They really want it. Most of them want it because there is such terrible suffering at the end of life that can be prevented and that some of us are horrified by. But you will not be able to actually ensure...because we have limited MAID providers. We don't have enough for our track one, which is those for whom natural death is reasonably foreseeable. We don't have nearly enough for track two, which is those for whom natural death is not reasonably foreseeable. Come March, we won't have enough for those with mental illness as the sole underlying condition, and we won't have enough for the people with an advance directive that needs to be acted upon.

But to do the best we can for the most people, I will just say that, first, the person must be very specific, and even specific about things like, “If I'm happily playing with my dolls, I do not want to continue that sort of life.” Then you have to leave it to the clinicians, as you do now, and we have to take it case by case. In these kinds of cases, I will look at what the person wrote. I will try to find out what their aims in life were in general. Were they the kind of person who told their kids 20 years ago that they never wanted to live in a demented state? Were they part of this? Was this part of their whole being? That will make it easier for me to be able to provide.

You're never going to be able to fix this problem completely, but you can do what's best for the most people.

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

Thank you very much.

It's now Mr. MacGregor's turn to take the floor.

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

Thank you very much, Madam Chair.

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

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

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

Thank you to our witnesses.

It's been pretty remarkable for our committee to listen to the wide range of subjective experiences with dementia, either from clinical practice or personal familial relationships of other people who have gone through the disease. Sometimes, it's been both. We've had clinicians who are experts in dementia and who have a close family member living with it.

Dr. Wiebe, I'd like to start with you. You were talking in your opening statement about the research you've done, and surveying people's attitudes and support for advance requests and some of the reasons behind that. You mentioned a fear of the loss of dignity, the loss of freedom, the loss of memory, the inability to recognize close personal familial relationships.

Certainly the theme of stigma with dementia has been common for this committee. I know that just saying the word “dementia” for many people conjures up a lot of negative emotions.

When people were expressing their thoughts about dementia and their support for advance requests, did your research uncover any currents about what's informing people's attitudes toward dementia? Some people may not have a very good knowledge of the disease, but others have incredibly close relationships and they've been informed by that.

Do you have any other thoughts to share on that theme?

[Dr. Ellen Wiebe]

People who went into detail about why tended to be the ones who said “I watched my mother” or “I watched my aunt.” They know a great deal about dementia from the outside, or inside a family but outside the person. They were very knowledgeable.

I think the people who have no personal knowledge of dementia are less likely to be interested in the subject and just want to talk and talk about it.

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

In our previous panel, the first hour of today's meeting, Dr. Upshur was referencing the state of end-of-life care in Canada and that it may also be something that informs people's opinions on dementia. He said that a lot more research and resources are needed in that.

Do you have anything to add to that?

[Dr. Ellen Wiebe]

These are the kinds of conversations I have every day with my patients. They say, “If I can't take care of myself in my own home, I don't want to live any longer.” They talk about independence—not just quality of care, but having strangers wipe their bum. That's such a common statement. People can say they have really good care in their home, but they still have somebody else changing the diapers.

That is what people will talk about in terms of what is unacceptable, that there is no care level acceptable for that level of disability, because that level of disability is unacceptable.

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

You referenced the democratic pressure that exists—there's a very strong majority of Canadians who support moving ahead with advance requests—for our national Parliament.

If we are going to amend the Criminal Code.... You mentioned the word “specificity”. How much specificity do we attach to it, as federal legislators, and how much needs to be left to the provinces? How do those work together?

[Dr. Ellen Wiebe]

Well, I'm not a constitutional expert or a political one. I know that the criminal law can't be as specific.... Just make sure the word “specify” is in there somewhere, so that an advance directive that just says “Kill me if I'm a vegetable” is not legal. It has to be specific, and then we'll have smart people figuring out the best ways to write those specifications.

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

Okay, thank you.

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

Thank you very much, Mr. MacGregor.

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

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Mégie.

We will close out the meeting with questions from the senators.

We'll begin with Senator Wallin.

Senator Wallin, you'll have three minutes.

[Pamela Wallin]

Thank you very much.

I just want to comment on what Mr. Beaudry said about how advance requests that we might make at 60 would maybe make no sense to us at 75 or 80.

I just have to say that we do this all the time within the law, legally, in this country. We write wills. We leave them with lawyers. They may have been written five, 10 or 20 years ago. We have “do not resuscitate” orders. We now have final waivers of consent. There are lots of concepts around where this is practised.

The legislation I'm putting forward in the Senate now is based on consultations with people who have been part of this process for a very long time. We are proposing that there be a long list—to Dr. Wiebe's point—with very specific circumstances under which a person doesn't want to live and wants to proceed with their advance request. It's not, “I can't feed myself on Tuesday”, but it's still very specific: “I am no longer able to feed myself on a consistent basis.” It goes on through all of the things that she's already noted.

The other part that I think is very key to this is that the updates of this need to be regular. We've said five years. I'd be very comfortable with three. I think we have to do what gives the most people comfort on that question.

Then we come to this very important role of the substitute decision-makers. They can't just show up five minutes before this request. These people also have to be involved in the process of making sure this is updated. This is a huge commitment for people, but I think it's the only way we can do it. If you are going to be one of my two substitute decision-makers, then you are going to have to participate in this process of updating and of being interviewed by perhaps a lawyer, a doctor or another medical professional in this field. The issue is that when it comes to the provision of MAID, it may not be your family doctor. That may not be the person. These substitute decision-makers need to be very familiar with your wishes over a long period of time.

I can't think of any more safeguards that we can put in while still respecting the person's views, laid out repeatedly, about what constitutes quality of life and dignity in death.

Dr. Wiebe, do you have anything else to add to that list that I should have been considering?

[Dr. Ellen Wiebe]

No, that sounds good. As I said, it has to be specific enough that you'll find a provider who will actually provide, at that point.

[Pamela Wallin]

Yes. I realize that's an issue for everyone.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Doctor.

Thank you, Senator Wallin.

I'm sorry. Three minutes go by very quickly.

Senator Mégie, you have the floor for three minutes.