Evidence of meeting #10 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 disabled.
A video is available from Parliament.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
You talked about substituted consent. That refers to a situation in which someone makes decisions for a child with an intellectual disability, doesn't it?
Senior Policy Analyst and Advocacy Advisor, Quebec Intellectual Disability Society
Absolutely.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
Are you telling us about this because parents tell you they'd choose that option if it were available?
Senior Policy Analyst and Advocacy Advisor, Quebec Intellectual Disability Society
Absolutely.
Senior Policy Analyst and Advocacy Advisor, Quebec Intellectual Disability Society
That option has also been discussed in the National Assembly of Quebec, where it was rejected. Consequently, it wasn't included in the bill that was introduced last week.
Substituted consent has always been a relatively easy solution to apply to to prevent certain individuals from having genuine legal capacity. Rather than give those persons the tools with which to exercise their own rights, the system often grants substituted consent to parents, in particular, and families.
Liberal
Hedy Fry Liberal Vancouver Centre, BC
Thank you very much, Chair.
Today, I guess I heard a lot of compelling evidence of both people who were disabled and people with intellectual disabilities. I think all of it makes a lot of sense. Obviously, if we had a system in which we could give everybody the support they needed, economically, psychologically and socially with support systems in place for them, and then people, having lived with that, still believe they would like access MAID with informed consent, I can see that happening.
I think you're absolutely right. I was appalled to hear some stories today about people who chose MAID purely because they were living in poverty and couldn't even afford treatments.
I could ask you what all three levels of government should do to give that kind of access, to create a system in which, when you look at all of the psychosocial supports that are needed, they are indeed there and are done. What would you suggest that all three levels of government do to create a seamless system, because provinces are responsible for thing A, and the federal government is not responsible for it, and of course we have a patchwork across the country. What would you suggest?
I'll ask Monsieur Ragot.
Senior Policy Analyst and Advocacy Advisor, Quebec Intellectual Disability Society
Thank you for your question.
That's another question that's very hard to answer. As our colleagues in the Disability Without Poverty movement said, what's needed is money, a decent income, accessible high-quality public services and, of course, housing that's secure, accessible, of good quality and suited to the needs of persons with disabilities.
Transportation also has to be provided so people can get to work or to the place where their services are provided. We also need psychosocial services: social, psychological and psychotherapy services. There has to be a set of support services for persons with disabilities. It really takes a mosaic of services for people really to be well…
Liberal
The Joint Chair Hon. Yonah Martin
Dr. Fry, I apologize. There was a slight miscommunication and Mr. Arseneault will take the other half, if that's okay. I believe one of his witnesses is here this evening.
Thank you, Dr. Fry.
Monsieur Arseneault.
Liberal
René Arseneault Liberal Madawaska—Restigouche, NB
Thank you, Madam Chair.
My first question is for Ms. Landry, I know it's late where you are, nearly 10 o'clock.
Some people who oppose medical assistance in dying tell us that inadequate palliative care could be driving the increased demand for MAID. According to the statistics, approximately 83% of people who've requested such assistance were already in palliative care, and approximately 15% had decided against palliative care and requested MAID directly.
Would you please describe your father's experience in that context?
As an Individual
That's exactly the situation my father was in. He was at the end of life, clearly. He was technically in palliative care, but he had been ill for years. He had had cancer for almost 20 years. He had always said that when there was no longer any quality of life and he was suffering too much, he would opt for medical assistance in dying, and that's exactly what he did. He waited until there was no longer any quality of life before making the request. Technically, he was receiving palliative care. He had been prescribed medication, including morphine, but he refused to take it. He wanted to remain lucid up until the final minute. And then, one day, he requested medical assistance in dying.
I was shocked to hear in the earlier presentation that people had been able to receive medical assistance in dying within 48 hours. In my father's case, it took two weeks after he made the request. The doctor and the medical team regularly checked with him about his request right up until the final minute, over a period of two weeks.
So the process wasn't exactly rapid. By rapid I mean that it wasn't within the 48 hours mentioned in the example we were given earlier about how things are apparently done elsewhere.
Liberal
René Arseneault Liberal Madawaska—Restigouche, NB
Thank you very much, Ms. Landry.
My next question is for Mr. Conrad Saulis.
I agree with and understand what you were saying about the fact that suicide in your community is not an option and that the emphasis is on resilience, healing and hope. I would like to see all communities in Canada, no matter where they may be, give the same message to their young people.
Last week we heard from expert witnesses who told us that they could distinguish between someone with suicidality who is requesting MAID, from a person who is making the same request, but who does not have suicidal tendencies.
A few of my colleagues were reassured by these comments.
What's your view of psychiatrists who tell us that they can make this distinction?
Executive Director, Wabanaki Council on Disability
The measures are of cultural differences. First nations, Métis and Inuit cultures are vastly different from mainstream society—European society. We live in your society. We live under your terms and conditions. We'd love to be living under our terms and conditions. Being assessed by the standards, values and morals of the European societies that came over here and established the governments in place does not provide the kind of cultural support or knowledge required to determine when an indigenous person might be considering, or acting on thoughts of, suicide.
Liberal
René Arseneault Liberal Madawaska—Restigouche, NB
Sorry to interrupt, Mr. Saulis. Time goes by so fast here.
If you had one recommendation for a safeguard—only one—what would it be?
Executive Director, Wabanaki Council on Disability
Regarding safeguards, I would say there definitely need to be regulatory requirements for people involved in the medical field who are providing this advice to individuals. They would need to seek out supportive advice from elders, knowledge-keepers and family members. That would be a legal requirement for those medical people.
The Joint Chair Hon. Yonah Martin
Thank you, Mr. Saulis, and Mr. Arseneault.
Next we'll go to Mr. MacGregor, followed by Mr. Thériault.
Go ahead, Mr. Thériault.
Bloc
Luc Thériault Bloc Montcalm, QC
Thank you, Madam Chair.
My questions are for the representatives of the Quebec Intellectual Disability Society.
In one of its recommendations to us, the Association québécoise pour le droit de mourir dans la dignité stated the following:
To temporarily maintain a complete prohibition on eligibility for medical assistance in dying for persons with a serious intellectual disability unless there is absolute certainty about the person's decision making capacity.
I was reading the brief that you submitted to the Select Committee on the Evolution of the Act respecting end‑of‑life care, in July 2021, and noted that it could also apply to your second recommendation, which was, in all instances to prohibit proxy decisions on behalf of people with an intellectual disability who are deemed unable to consent. So far, I would imagine, you might find that reassuring.
You also made other interesting recommendations which I believe are consistent with best practices and reflect what appears to currently apply in medical practice. You also said that it was essential to “require that persons with an intellectual disability be unable to apply for medical assistance in dying unless they are at the end of life”. I think that borders on the grey area between capacity and incapacity, in which case I would like to know how one determines decision making capacity
Ms. Duranleau or Mr. Ragot, can you provide an example of a case that would fall into this grey area?
Executive Director, Quebec Intellectual Disability Society
Mr. Ragot will answer your question.
Senior Policy Analyst and Advocacy Advisor, Quebec Intellectual Disability Society
That's a difficult question to answer.
The research would appear to show that people with an intellectual disability understand the death of people around them. That's pretty clear. They can deal with and live with such situations. What is less obvious is whether they are capable of understanding the irreversible aspect of their own death. That's when we find ourselves in a grey area that is very difficult to sort out, as you've just said.
In Quebec, the difference between medical consent and legal consent, in terms of signing a contract, for example, is established by means of tests to determine their understanding of the medical procedures at issue. To my knowledge, there is no perfect tool to determine whether a person is capable of understanding their decision to request medical assistance in dying. It really depends on the severity of the intellectual disability.
Bloc
Luc Thériault Bloc Montcalm, QC
You require that a physician with relevant skills and expertise in intellectual disability participate in the assessment of the request. I would imagine that the corollary of what you just explained. I think that goes without saying.
You also raised all the issues surrounding socioeconomic inequality. I further believe that the assessors would clearly have to take all of that into account. That's also something that was noted in the expert report on mental health.
Not only that, but you said that all applications for medical assistance in dying should require a mandatory comprehensive statement from the health professional. I'm not sure what you're thinking of specifically, given that there are reports already. There is a Quebec commission that examines every medical procedure.
Do you think that something more is required? I would imagine that it's not anything too complicated. What form might it take?
Senior Policy Analyst and Advocacy Advisor, Quebec Intellectual Disability Society
There was the Vulnerable Persons Standard, which had been put forward in connection with the first medical assistance in dying bill. The standard suggested measures that would analyze the social determinants of health and other determinants of people's vulnerability, and requested that more exhaustive reports be prepared. This would make it possible to document the real reasons why people were requesting medical assistance in dying, which might have been less obvious on the surface. That's also what underlies our advocacy role, because we know that there are many social determinants of health and vulnerability that act as major motivating factors for some people who are requesting medical assistance in dying.