Medical Assistance in Dying Committee on May 5th, 2022

[The Joint Chair, Liberal, Marc Garneau]

Doctor, could I ask you to wrap it up, please?

[Dr. Melissa Andrew]

Yes.

This provides an opportunity to advocate action on the national dementia strategy. Just as we talk about the need for strengthening mental health care in the context of MAID for mental disorders and we worry about people seeking MAID for physical conditions when palliative symptom management is suboptimal, and we appropriately see this as a time to call for strengthening those services, we must also see that this issue of advance requests for MAID is intimately tied with the quality of dementia care in Canada.

Thanks.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Andrew.

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

[Michael Bach, Managing Director, Institute for Research and Development on Inclusion and Society, As an Individual]

Thank you, joint chairs and honourable members of this committee, for the opportunity to participate in these hearings.

I urge the committee not to recommend adoption of advance requests for MAID for three main reasons.

First, advance requests as a planning tool cannot deliver meaningful consent. What would it look like if advance requests for MAID were adopted into the Criminal Code’s regime for legal exceptions to its prohibition on assisted suicide, knowing what the Alzheimer Society of Canada has called the “rising tide” of dementia in this country? In the decades to come, more and more people who don’t know what is happening to them are caused to die. Most of them are women with cognitive disabilities.

Advance care planning, in which advance requests for MAID would be added as another tool, has been shown in a series of systematic studies and reviews to be ineffective. People are simply unable to reasonably predict future preferences, capacities or circumstances, which will impinge directly on future decisions about their health care. If that predictability is impossible, it leaves it entirely up to substitute decision-makers to determine that a person is suffering sufficiently to intentionally cause their death.

Remember that advance care plans do not represent consent to anything; they express assumptions and wishes about future states to guide prospective substitute decision-makers. In this scenario, it is the consent of substitute decision-makers that determines if and when a person dies.

In no way would such a practice meet the Supreme Court of Canada’s requirements in Carter that assisted suicide is justified only in cases of “a competent adult person who…clearly consents to the termination of life.” Valid consent was pivotal in Carter.

Second, it's most likely that stigma is driving Canadians to call for advance requests, rather than a defensible claim for autonomy. Although much has been said about the Ipsos polls conducted for Dying with Dignity Canada and the 2021 poll reports that 83% of Canadians support access to MAID through advance requests, it's important to also consider the 2017 Leger poll conducted for the Alzheimer Society of Canada. It shows that the majority of Canadians believe that people living with dementia are likely to experience discrimination and that they are ignored, dismissed, taken advantage of, feared or met with distrust, etc. A majority of Canadians who live with dementia confirm this experience.

Given the stigma and fear about dementia that weighs on Canadians’ consciousness and directs their actions and inactions, is it any wonder that a majority might advocate in favour of advance requests to cause the death of the cognitive strangers that we project in our midst and into our own futures? Is this a reasonable basis for law reform? Is theirs a defensible claim for autonomy rights? Should we submit to the Ipsos poll when the Leger poll tells us such a disturbing story about our collective consciousness and the current realities of growing old in Canada? Surely our law reform and public policy efforts should shift to fast-tracking strategies for dementia-inclusive communities and eliminating stigma, as the 2019 national dementia strategy calls for.

Third, it would open the door to MAID for people who are unable to consent but who don’t have advance requests. What argument would there be to a substitute decision-maker who goes to court to request access to MAID for their family member with a significant intellectual disability, a traumatic brain injury, dementia or Alzheimer's, because they are suffering intolerably in the circumstances but are unable to consent and don’t have an advance request? Opening the door to advance requests will inevitably lead to litigation charging that when it comes to providing MAID to people who are not competent but are suffering, it's discriminatory to restrict it only to those who have advance requests, which don’t constitute informed consent in the first place.

The Supreme Court reasoned in Carter that what they acknowledged as a “slippery slope”—their term—in other countries would not happen in Canada. They said explicitly that euthanasia for minors or people with psychiatric disorders would not happen here because our “medico-legal culture”—their term—is so different from Belgium's, for example. Obviously, they were wrong. Authorize advance requests and the hinges start to come off the door.

We should remember that the justices deciding Carter stipulated that their reasoning applied to the case before them. They didn’t even mention advance requests. I suspect that is because any such measure represents a profound violation of the principle of informed consent, which they so clearly established as a fundamental safeguard.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Mr. Bach.

We'll now go to our third witness.

Dr. L'Espérance, you have the floor for five minutes.

[Dr. Georges L'Espérance, President and Neurosurgeon, Quebec Association for the Right to Die with Dignity]

Thank you, Madam Chair and Mr. Chair.

Senators and members of Parliament, the Quebec Association for the Right to Die with Dignity thanks you for holding this meeting.

I am a neurosurgeon retired from surgical practice and now an active provider of medical assistance in dying. Our suggestions here are intended as principles that should guide all thinking on such matters as personal self-determination, respect for expressed wishes and values and dignity in life and death without medical paternalism or religious or ideological dogmatism.

Our brief has been forwarded to you and contains numerous hyperlinks.

Today I will outline our thoughts on advance requests for medical assistance in dying and say a word about two other equally important topics.

All capable persons who have received a diagnosis of cognitive neurodegenerative disease should, while all their faculties are intact, be able to indicate by an advance request that they wish to obtain medical assistance in dying at such time as they deem appropriate for them, based on their values, regardless of their cognitive state at that time. That position is supported by nearly 80% of Quebeckers, according to a scientific survey conducted by the Collège des médecins du Québec in fall 2021.

In February 2016, during consideration of Bill C‑14 within these walls, that's also precisely what was clearly spelled out in recommendation 7 of the report prepared by the Special Joint Committee on Medical Assistance in Dying, consisting of senators and members of Parliament.

In Quebec, a transpartisan special committee of the National Assembly tabled an informative report on this subject, which you have no doubt seen, on December 8, 2021.

As a neurosurgeon, and like many clinical experts, I want to point out here that what some call a “happy dementia” is an oxymoron used to describe the condition of a human being who is no longer what he was during his life. Claiming that such an individual may have changed his mind about seeking medical assistance in dying because he seems cheery and fine, whereas, by definition, he is no longer the same person, may seem like an insult to that person's intelligence and, especially, to the person himself, like a negation of the personality he had initially and throughout his life.

I also want to state that medical assistance in dying does not compete with palliative care in any way but is an additional compassionate tool in end‑of‑life care. Medical assistance in dying takes absolutely nothing away from palliative care, financially or otherwise, and requires the presence of a physician or nurse for only a few hours in total, at no cost to the system.

An absence of physical suffering can in no way preclude future existential suffering that the person may express while still capable of doing so. It is important to note that eligibility for medical assistance in dying brings serenity and peace of mind and enables those afflicted to live fully in the present without experiencing anxious thoughts of a long road of suffering and loss of dignity as a result of a disease that leads inevitably to a slow death.

Those of you who may have experienced the pain of seeing a loved one disappear into the abyss of dementia will definitely not want to experience the same long existence without living that is the reality of dementia.

Our recommendation is that medical assistance in dying by advance request be authorized upon confirmation of a diagnosis of cognitive degenerative disease and at the time the person has decided in advance by designating a representative.

Mental health disorders taken together are a real disease that causes undeniable suffering. Continuing to rule out mental health issues can only lead to legal challenges, a process that is complex and unacceptable for the patient concerned. Our recommendation is that medical assistance in dying be accessible by March 2023 for persons with mental health problems based on strict clinical eligibility criteria to be established with experts in the mental health field.

We also recommend that persons with significant cognitive impairment be completely and permanently disqualified from receiving medical assistance in dying, except where there is absolute certainty that the person's decision-making ability is intact.

Lastly, it is the association's view that medical assistance in dying must be extended immediately to mature minors 14 to 18 years of age. We recommend that medical assistance in dying be accessible to mature minors suffering from an incurable physical pathology, but not to those suffering from mental health pathologies.

Thank you.

I will answer your questions as best I can, based on my knowledge.

[The Joint Chair, Liberal, Marc Garneau]

Thank you for your testimony, Dr. L'Espérance.

I now give the floor to my co‑chair, Senator Martin.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Mr. Garneau.

We will begin with questions from the House, and each questioner will have five minutes.

Let's begin with Madame Vien for five minutes.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Thank you very much, Madam Chair.

Thanks to the witnesses for being with us this evening. The subject before us is very important, very moving and complex.

I am a former Quebec government minister. In 2014, I was in that position and voted for medical assistance in dying. Today, Quebec members have issued a news release to urge the present government to proceed with the changes proposed by the medical assistance in dying committee in Quebec based on a broad consultation.

The studies we are currently conducting on the subject are very interesting. We have to take the time to consider the right issues. We have to avoid moving ahead blindly and instead be clear about what we're doing. It's obvious that the positions expressed here this evening are entrenched.

Dr. L'Espérance, earlier the Honourable James Cowan and Ms. Long, from Dying with Dignity Canada, said that people should go ahead with or without a diagnosis. What you're telling us this evening is that you have to establish a diagnosis.

[Dr. Georges L'Espérance]

Yes, a diagnosis has to be established. Otherwise anyone 20 years old or more could request medical assistance in dying regardless of what has happened in their lives, such as a head injury or stroke. These aspects are already covered in large part by the advance directives, if the person has made them known. Medical assistance in dying can't be requested through advance directives.

What we're requesting is that a patient who has received a diagnosis of cognitive neurodegenerative disease be able to give advance directives specifically concerning medical assistance in dying.

All my colleagues agree that a precise diagnosis has to be given, whether it be of Alzheimer's disease, Parkinson's disease or Lewy body dementia, for example.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

In this study we are also going to discuss mature minors. Mental health is also, of course, going to be included in our deliberations, although we won't be able to address these questions this evening, because we would run out of time. In any event, what we'll be looking at today are advance requests for medical assistance in dying.

What are the most important precautionary measures we should be thinking about?

[Dr. Georges L'Espérance]

For advanced directives, you might find me somewhat chauvinistic, but Quebec's proposals seem very reasonable to me. What's involved is designating a trusted relative, friend or substitute, to be responsible for alerting the care team of the patient's condition when it has reached the stage specified by the patient as when they wanted to receive medical assistance in dying. After that, the assessment would be carried out by the care team.

It's important never to forget that these patients are not being treated only by a doctor. They always have a care team consisting of a nurse, a social worker, etc. I can't see anything wrong with a wait time of three, four or five months to assess requests. There is nothing urgent when the family member says that his father or mother has reached the stage at which they had said they wanted to receive medical assistance in dying. The safeguard would be to plan for a period of time before doing an assessment.

The other problem is decision-making capacity. For a patient with a cognitive neurodegenerative disease, this capacity disappears all at once. They might reaffirm their desire for medical assistance in dying. It would be relatively easy to assess the patient's decision-making capacity every year or every two years, for example. As soon as the patient is deemed to be incapacitated, a formal assessment would be carried out by two doctors.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Earlier, a witness also told us that the request would have to be reiterated at a specified frequency.

[Dr. Georges L'Espérance]

The problem is setting this frequency. If it has been agreed that the request is to be reiterated every three years, and after the first three years, the person is already incapacitated, it's a problem.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Yes, I understand.

[Dr. Georges L'Espérance]

That's why one of the safeguards could be an assessment of patient decision-making capacity when they are asked to review their position.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

I'll be brief, because time is running out.

My understanding is that you are a medical assistance in dying provider.

Is that correct?

[Dr. Georges L'Espérance]

Yes indeed.

[The Joint Chair, Hon. Yonah Martin]

You have 30 seconds left Ms. Vien.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Thank you.

It's clear that there are people who are worried. In the course of your career, Dr. L'Espérance, have you ever seen or heard about any missteps?

[Dr. Georges L'Espérance]

No, absolutely not. At least none of the figures I'm aware of have demonstrated that there have been any in Quebec. When there are somewhat more sensitive issues, we in Quebec have established a private forum of doctors, one that is closed and confidential. The same thing happens in the rest of Canada, which has the Canadian Association of MAID Assessors and Providers, CAMAP. When there are difficult cases, doctors discuss them among themselves.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Thank you.

We really don't have much time left. Would it be possible to send us the surveys you were just talking about?

I'd also like to point out that I don't have access to your brief. I believe that's because it has not yet been translated. We will therefore familiarize ourselves with it afterwards, Dr. L'Espérance.

Thank you very much, Madam Chair.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Ms. Vien.

Next we'll have Monsieur Arseneault, for five minutes.

[René Arseneault, Liberal, Madawaska—Restigouche, NB]

Thank you, Madam Chair.

I'd like to thank all the witnesses.

Dr. L'Espérance, I'm going to ask you a series of questions along the same lines as those from my colleague Ms. Vien.

I find it interesting. It's as if you were taking a middle-ground position on the matter of advance requests. There are people who are squarely in favour and others who are clearly against. You are in favour, but only once the diagnosis has been received.

[Dr. Georges L'Espérance]

Yes, absolutely.