Medical Assistance in Dying Committee on May 9th, 2022

[Luc Thériault, Bloc, Montcalm, QC]

All right, I understand that.

However, you do agree that a distinction must be drawn between the two regimes because they don't concern the same thing.

[Danielle Chalifoux]

That's correct. They aren't the same thing.

[Luc Thériault, Bloc, Montcalm, QC]

As regards support and the process, Ms. Bernier, we haven't been sitting for long, but we've heard a great deal.

We've discussed a distinct official form and a diagnosis. We said the request should be repeated and be made mandatory. We said that patients should be able to revoke their request at any time and that objective criteria had to be established. We talked about designating a representative who would decide on the moment but who would communicate with the attending team to ask them to determine whether the patient had passed the tolerable threshold.

Don't these safeguards amount to reasonable support in the circumstances?

Doesn't this calm your fears about potential deviations?

[Louise Bernier]

Thank you for that question, which is very interesting.

I have a lot to tell you, but I'll try to summarize my comments.

I've extensively studied the advance medical directives regime, and, as you know, very few people have had access to it. We're talking about slightly more than 100,000 persons in Quebec, so it isn't an extensively used regime.

I don't share ^x Ms. Chalifoux' view. I think advance medical directives do cover strokes. We should separate that and stick to diagnoses of neurocognitive disorders.

As for support, that's a very interesting question, but I don't think we can do without a discussion beforehand. There's an implementation problem. A read flag is raised because of what was said, but there was no discussion.

According to some recent studies conducted in 2022, the discussion is far more important for patients than the form. Consequently, it's important to discuss various scenarios with them and to ascertain their values. I think it's important to state in advance that the process won't be limited to the form and that the basis of the decision will be explained.

It's also important that the family be present.

I really view this support as being divided into two parts.

[The Joint Chair, Liberal, Marc Garneau]

I would ask you please to conclude your remarks soon, Ms. Bernier.

[Louise Bernier]

There are the measures, and there's the dialogue. I think that has to be preserved.

[Luc Thériault, Bloc, Montcalm, QC]

Are you talking about the family or a proxy?

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Monsieur Thériault.

It's now Mr. MacGregor's turn. You have five minutes.

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

Thank you very much, Mr. Co-Chair.

It's quite obvious, when you look at the status of health care in Canada, that many groups simply do not have access to equitable care. There are very real concerns for many communities out there about the conversations we're having around this table and the direction that this law could potentially be taking.

Professor Bernier, I'll start with you.

On the subject of informed consent in relation to the concept of advanced requests, we noticed that a lot of people have a fear of being a burden on their families. Given the state of long-term care in Canada, they also have a fear of losing their agency. They look at people who may live with disabilities. They fear being put into that kind of life.

In this conversation, we're dealing with very weighty subject matter. I mean, how on earth are we going to address this committee's mandate, if we're not...? It seems like we're putting the cart before the horse if we're not dealing with those larger societal issues, these bigger and broader topics of equitable care being unavailable to so many under-represented groups.

If we're not dealing with that, how are we proceeding on this? Do you have any thoughts on that?

[Louise Bernier]

I don't think they are mutually exclusive. If we want the debate on extending medical assistance in dying to include advanced directives, it's altogether possible that we would see people choosing that option while fully aware that they've made that decision because they don't want to be caught in a situation that's not equitable.

As for the relational autonomy I was speaking about earlier, you're right to mention that our decisions are rooted in a context that is both cultural and familial. We are influenced by a lot of factors. It is in fact quite possible that one's decision about opting for medical assistance in dying is, as Mr. Lemmens said, based on the perception we have of available care.

Someone might not want to feel diminished, and it's a choice they make. I'm not questioning that. What I'm saying is that if we go in that direction, then it shouldn't be become the only option. I spoke earlier about therapeutic abandonment. I believe that it's really important to continue to expend a lot of energy and resources on quality care for people.

I don't know whether that answers your question. Don't hesitate to get back to me as needed.

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

No, no. Thank you very much for that.

Professor Lemmens, maybe I'll turn to you.

I was taking notes as you were speaking. You were speaking about the problem of procedural tools and their inability to fix these broader ethical issues.

Do you want to take some time to expand on that? I think that's a very real challenge that we have. It's the crux of the matter before us as a committee.

[Dr. Trudo Lemmens]

I would first of all say that the procedural tools you find in the Council of Canadian Academies' report focus on issues of communication, even at the level of guaranteeing that persons are respected in their future choices when they are no longer the same person or have the same interests.

As Professor Bernier has shown—and also the work with her colleague Professor Régis, at the Université de Montréal—in the context of advance requests, we know already it is very hard to predict in advance what we will think, what will happen and what kind of interests we will have. That's one issue that is already not guaranteed by the procedural tools.

The procedural tools certainly do not address broader societal concerns, such as the fact that we're crossing the line into allowing third parties to decide whether a person is now suffering intolerably and whether the person's life can be ended. We're crossing a line, which impacts also on our perception of cognitive disabilities more generally. If we do it for people who, before becoming cognitively disabled, say that they will want to die because they will lose dignity, what do we say to people who currently have cognitive disability and have not made that choice?

We're crossing a line into a practice that undermines a fundamental commitment to allowing persons with cognitive disability to be treated with respect and dignity and to be involved in the decision-making. The international Convention on the Rights of Persons with Disabilities emphasizes that. It's not the case that when someone has cognitive decline, you can say, “Oh, in the past you made this decision and now we will ignore your current identity and interests and give you surreptitious medication against your explicit consent and then end your life.” These issues cannot be solved by procedural means.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much.

We'll now go to the senators. These are three-minute rounds.

We'll begin with Senator Kutcher.

Senator Kutcher, you have three minutes.

[Stan Kutcher, Senator, Nova Scotia, ISG]

Thank you very much, Mr. Chair.

I have two questions for Ms. Chalifoux.

The first one is this: Do you think the fact that concerns have been raised about how advance requests are managed in some countries is a valid reason for advance requests to be prohibited in Canada, or do you think that Canada can set up its own system of humane and comprehensive safeguards for advance requests, which may differ from that in other countries?

Second, if that's the case, who should develop these safeguards and how should they be implemented? Would a national standards and certified training program for MAID providers be a useful tool in addressing this issue?

[Danielle Chalifoux]

In response to your first question, there are indeed examples of these practices elsewhere. The Netherlands introduced advanced medical directives just over 20 years ago. That's certainly long enough for them to have acquired some expertise.

I simply want to underscore the fact that in Quebec, an expert committee of which I am a member submitted to the government a way of proceeding with all kinds of guidelines for the application and implementation of these advanced medical directives. We went into a great deal of detail, and I believe that it is an original body of work because we didn't see anything of this kind elsewhere. It truly met the requirements for the implementation of medical assistance in dying requests.

I think that your second question was mainly about safeguards. It's definitely more complicated to assess the situation for instances of advanced medical directives than it is for contemporary requests.

I am somewhat in agreement with what Ms. Bernier said when she spoke about the importance of preparing a profile of values and to think about personal choices. People need to be really aware of what they want to do. If we want to protect the right to self-determination in connection with requests for medical assistance in dying, then we need to provide all the information needed to give people the best possible conditions for them to make a request that is the outcome of free and informed consent.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much.

I'm now going to Senator Mégie.

Senator Mégie, you have the floor for three minutes.

[Marie-Françoise Mégie, Senator, Quebec (Rougemont), ISG]

Thank you, Mr. Chair.

I'd like to thank the witnesses for being here with us today.

Ms. Chalifoux, I know that the Institut de planification des soins du Québec, in a brief to the Council of Canadian Academies concerning advance medical directives, had listed five or six safeguards.

Could you cite them fully and send us the document, even though it goes back to 2017?

We'd like to see whether the Institut has changed its mind since then. It would be helpful if we had the document.

Thank you.

[Danielle Chalifoux]

I'd be happy to send it along. The document is already several years old, and I believe the views of the Institut de planification des soins du Québec may have shifted somewhat since then. I don't have all the conditions that were mentioned with me, but basically, with respect to advance requests, it's to support people when they are making the request to ensure that there was free and informed consent.

The other crucial moment is when you have to determine whether someone has reached the stage at which they felt the time has come for them to receive medical assistance in dying. It's very important to always show respect for the desires expressed by them. That's why the request for medical assistance in dying has to be detailed. In the request, patients should mention the threshold of suffering required for the moment when they wish to receive medical assistance in dying in accordance with their wishes. The people around them, whether the multidisciplinary medical team, the family or caregivers, would be with the patient, but they are not the ones who should be making the decision. To respect people's right to self-determination, it's very important for the advance request to clearly and precisely state the patient's intentions.

There were certainly other conditions mentioned in the brief as well, but unfortunately, Ms. Mégie, I don't have them in front of me. I'll definitely send you the document.

[Marie-Françoise Mégie]

Do I have a few seconds left, Mr. Chair?

[The Joint Chair, Liberal, Marc Garneau]

You have 15 seconds left, Ms. Mégie.

[Marie-Françoise Mégie]

Ms. Bernier, I was very pleased to hear your talk about the duty to provide support.

In your opinion, at what point should medical assistance in dying be provided after the advance request is made?

[The Joint Chair, Liberal, Marc Garneau]

Please be brief, Ms. Bernier.

[Louise Bernier]

Okay.

It all really depends on the progression of the disease. Ms. Vien asked why I felt ill at ease, and that's why. What's involved is determining the appropriate moment ahead of time, without altogether understanding the course of the disease. There are various possible scenarios, and suffering is one of the factors on which I have trouble taking a position

When a person assesses suffering ahead of time, it's the person in the present who is making a decision about the person of the future. There is abundant scholarly literature on that subject. Has the person undergone a change in identity or not?

When someone does not appear to be suffering, it's difficult to determine the right moment to provide medical assistance in dying legally, while complying with our moral, professional, and ethical obligations as caregivers. The assessment of suffering is therefore something that requires in‑depth consideration.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much.

We'll now to go Senator Wallin.

Senator Wallin, you have three minutes.

[Pamela Wallin, Senator, Saskatchewan (Saskatchewan), CSG]

Thank you very much.

I would like to make a comment, if I could, Chairs, that over the last few sessions we have heard witnesses so many times using pejorative words and making claims about surreptitious medicating and other things. I think we need to make sure in advance that our witnesses are reminded that their statements should be supported with evidence and documentation if they are going to be meaningful for us here, and they should be qualified to comment on this, because it is our mandate to look at advance requests.

My question is for Danielle Chalifoux.

We talk a lot about safeguards for health care professionals. I think you mentioned that again this evening. I guess my concern is about the safeguards and assurances for the individuals who, being of sound mind, ask, through an advance request, to have MAID when certain conditions are met or when they have reached a certain level of decline.

How can we actually assure them of those safeguards without something like an advance request being expected and recognize that there simply isn't any other way?