Medical Assistance in Dying Committee on May 30th, 2022

[Michelle Hewitt]

As I just mentioned, I think the role there has to not be just to examine those conditions leading someone to follow through with MAID, but the solutions have to be put in place. That's the piece that is missing, that the assessor sees there are these extraordinary needs that are causing this suffering.

We go to great lengths in this country to take care of all kinds of people in all kinds of ways. We had an incredible response when we started the pandemic. We found vaccines and we rolled them out and those sorts of things. We rose to the challenge. We are not rising to that challenge when it comes to people who are in such crisis that they are not only asking to access MAID, but they are following through and dying.

I can only refer you back to my friend Madeline and her desperate need for treatment.

[Pierre Dalphond]

Do you think, for example, as one of the safeguards is a 90-day period, if somebody's in crisis, time will maybe help to solve the crisis? The assessors must try to understand the real reason why the person is asking to have access to MAID and try to redirect that person to proper social assistance, if available.

[Michelle Hewitt]

My question would be back to you all. What if that proper assistance is not available, but it is still necessary to relieve that suffering?

I strongly urge you to say that we're better than this. We can find these solutions for these people. Accessing MAID for non-medical reasons—for suffering that can be alleviated by other conditions—is simply unacceptable. With those safeguards and in those 90 days, what are those assessors going to do? Who's going to take that responsibility?

Are you, as parliamentarians, going to stand up and say that you will fund those things that desperately need to happen? That's what we need.

[Pierre Dalphond]

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Dalphond.

We'll now go to Senator Martin for three minutes.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Mr. Co-Chair.

I want to thank the witnesses for your very compelling testimonies.

Mr. Adair, my father suffered from spinal cord injury. He showed us his incredible strength through the suffering he endured. Thank you for your important work.

My question is for Dr. Coelho.

I'm wondering if you could comment on the scope of MAID that's being looked at by our committee. Do you have any comments as a family physician and from the experience you bring?

[Dr. Ramona Coelho]

Thank you.

I've watched every hour of the AMAD committee thus far. Up until today, committee members have disputed the truthfulness of stories that have been shared by witnesses who have come forward and said that MAID professionals are beyond question.

Consistently, there has been talking on top of experts who have been warning about caution and even questioning their integrity. As well, some physicians on the committee have really failed to provide the expected medical expertise surrounding clinical epidemiology or correct guidance on how to approach this as a medical procedure.

The cases of concern that we've all mentioned signal that the MAID regime safeguards do not work to protect Canadians. These stories contradict the statements by Abby Hoffman in committee, which were that there are simply no problems with the MAID regime. They actually point to inadequate data collection. You can't make good decisions if you don't have data.

Committee members asking loaded questions with only one-word answers have tried to paint concerned witnesses as wanting Canadians to suffer through years of useless treatment, but actually the reality is that patients are waiting years for treatment and this wears people down.

Consider that Ellen Wiebe testified that if someone wanted MAID, because it took five years to access the service, she would consider that irremediable. Patients with unaddressed psychosocial suffering will, therefore, be given MAID by assessors like her.

Audrey Baylis said she'd rather die than live in a nursing home. That is actually a statement about the atrocious state of our underfunded long-term care centres.

Also, I keep hearing a recurring legal argument that withholding MAID from certain groups is discriminatory, but this is not how medicine works. In medicine, we have strict, medical standard-of-care safeguards, as well as required eligibility to meet criteria for a treatment. Persons with mental illness with or without disability, which is often exacerbated by psychosocial suffering, have a disease process that can predispose them to suicidality with no proof that their suffering is irremediable. We just don't have the evidence.

Thomas Insel, former head of the NIMH, wrote a book called Healing, in which he confirms the unknown prognosis of mental health disorders and outlines how prognosis does depend on community life, supports and productivity—purpose.

In light of this, the government providing death as an option while simultaneously failing in its duty to provide timely care, supports, enriching community life and livable income is actually quite shameful.

Mr. Luc Thériault reassured us that if the expert panel and special joint committee arrive at the conclusion, that mental illness should be excluded, we should be reassured it would be, but we know now that the expert panel didn't even weigh in on that important question.

The Quebec commission has decided that MAID for mental illness should be excluded.

Mr. Chair, thank you for inviting me. The work of this committee is so important. I ask you for an honest review because your MAID regime is very dangerous.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Doctor. Thank you, Senator Martin.

This concludes our first panel. On behalf of all the committee members, I want to thank Dr. Coelho, Ms. Michelle Hewitt and Mr. Bill Adair for giving their time this evening on this extremely important topic of the theme of people living with disabilities in the context of medical assistance in dying. Your testimony and your candour in answering our questions are very much appreciated.

We still have a long way to go. We hope you'll follow us as we move forward. Your testimony tonight is very much a part of it, so thank you very much.

With that, colleagues, we will suspend briefly in preparation for the next panel.

Mr. Clerk, tell me when the panellists are up and checked so we can get going and start right away. Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Welcome to our witnesses this evening. For the benefit of the committee, we have the following people with us. We have Jocelyne Landry, who is appearing as an individual. From the Quebec Intellectual Disability Society, we have Madame Amélie Duranleau, executive director.

She is accompanied by Samuel Ragot, who is a senior policy analyst and advocacy advisor.

We also have, from the Wabanaki Council on Disability, Mr. Conrad Saulis, executive director.

Thank you for joining us.

The way we do this starts with opening remarks. Each of you will be given five minutes to make an opening presentation and we'll follow that with questions.

With that, I would like to invite Ms. Landry to begin, followed by Ms. Duranleau and then Mr. Saulis.

Ms. Landry, you have the microphone for five minutes.

[Jocelyne Landry, As an Individual]

Thank you, Mr. Chair.

I won't need five minutes.

I come from a region in northern New Brunswick, more specifically from a tiny village called Balmoral. I live in Charlo, on the coast of the Bay of Chaleur. I'm here because my father requested medical assistance in dying two years ago. That's why I agreed to appear before you and to share my experience.

My father had convictions and the courage of those convictions. He was at the end of his life. He had cancer and was really suffering at the end. He had told us several years before then that he had made his decision. As a family, we of course respected that decision. I'm not happy about losing my father, but I'm happy that he had access to medical assistance in dying and that he was able to choose how he wanted to leave us.

That's my experience in a nutshell. Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Ms. Landry.

Next, from the Quebec Intellectual Disability Society, we have Ms. Amélie Duranleau.

Ms. Duranleau, you have five minutes.

[Amélie Duranleau, Executive Director, Quebec Intellectual Disability Society]

Thank you very much.

Ladies and gentlemen, members of the Special Joint Committee on Medical Assistance in Dying, or MAiD, we would first like to thank you for the opportunity you have given the Quebec Intellectual Disability Society today.

We wish to make it clear that our organization is not opposed to medical assistance in dying for people nearing the end of their lives. Rather, we ask that adequate safeguards be put in place to ensure that no abuses occur. We believe that legislators must be cautious and consider the systemic forces that could threaten people with disabilities and specifically people with intellectual disabilities.

It should be noted here that intellectual disability, or disability in general, should never be a criterion for access to MAiD. With the necessary support and appropriate accommodations, people with intellectual disabilities can live fulfilling and rich lives. If people find themselves living with intolerable suffering related to their intellectual disability, it is because society does not include them, and they lack services.

The Society is also very concerned about the possibility of authorizing substituted consent for incapacitated persons at all stages of MAiD applications. This possibility had been raised by the Quebec National Assembly and, even if such a question is not under consideration today, it is important to discuss it.

On the one hand, the use of MAiD should always be tied to the validation of a free and informed consent from the person who will receive it; on the other hand, it may be difficult to assess this consent for incapacitated persons, especially those with a more severe intellectual disability. If these persons experience distress in relation to the death of someone close to them, it is generally more difficult for them to understand the permanent and irreversible nature of their own death. We therefore call on the legislator not to allow substituted consent for those who lack capacity to consent.

Regarding the legislator's desire to potentially allow the use of advance directives for access to MAiD, we would like to refocus the debate on the issue of the validity of consent in these situations. Asking a third party to consent to a procedure that leads to death through a substituted decision-making process is different from making advance requests to refuse certain procedures that may lead to natural death. In this light, opening the door to substituted consent, even for people who had previously consented, seems to us to be potentially dangerous and to fail to respect the spirit of the Carter decision which put the issue of consent at the heart of access to MAiD.

In our view, it is important to provide satisfactory alternatives for people with disabilities. This position has been advanced by the Canadian Human Rights Commission. Universal and high-quality public services, in sufficient quantity, must be provided to people who need them. Indeed, this is an obligation that Canada has towards people with disabilities under the Convention on the Rights of Persons with Disabilities. Thus, satisfactory alternatives are needed to provide a dignified life for people with disabilities and for the Canadian population in general.

As mentioned previously, we believe that MAiD should be a measure of last resort for people who are capable of giving free and informed consent and who, at the end of life, are living in unbearable suffering. We also distinguish between the issues of advance care directives and advance directives in relation to MAiD. The former allows for natural death, while the latter entails the use of an active procedure that ends life without clear and validated consent.

Furthermore, we believe that substituted consent should never be allowed for incapacitated persons, as they cannot provide free and informed consent. The Carter decision put the issue of consent at the heart of access to MAiD. It is important to respect this fundamental principle of health justice and ethics.

Finally, in the event that people with intellectual disabilities at the end of their lives make an application on their own, without any undue pressure, then we believe that they should be assessed like all other people, as long as their access to MAiD is not granted on the basis of disability.

However, it is important to have stronger safeguards in place to prevent ableism and the devaluation of the lives of people with disabilities.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Ms. Duranleau.

We'll now go to Mr. Conrad Saulis.

Mr. Saulis, you have five minutes.

[Conrad Saulis, Executive Director, Wabanaki Council on Disability]

Woli-Wolaqiwiw. Good evening.

Woliwon, thank you for the opportunity to present to your committee this evening.

My name is Conrad Saulis. I am with the Wabanaki Council on Disability. We work to support indigenous persons with disabilities living on our traditional and ancestral Wabanaki lands. We work closely with a key partner, the Mawita'mk Society, an on-reserve group home providing services to persons with disabilities.

I want to acknowledge that I'm speaking to you this evening from and on the sacred, unceded, unsurrendered ancestral lands of the Algonquin nation.

I will right away that MAID is not a readily welcomed concept or term for indigenous peoples of the Wabanaki lands. We have experienced far too much death in our families, communities and nations since first contact. Colonization has brought over 500 years of death, language and cultural knowledge loss, and loss of our ancestral lands for our nations and people. Believe me when I say that we are far beyond tired of losing things, including our identities as Wolastoqey, Mi'kmaq, Innu and Inuit, and our cherished family members.

We are tired of mourning the loss and deaths of our young people and of persons with disabilities. Both of these populations are amongst the most highly vulnerable peoples of this country and we believe that we must do everything we can to help them to continue to live their lives, find their identities and be meaningful people in our families, communities and our societies. Rather than finding ways of ending the lives of our young people and persons with disabilities, we would rather so much want to be finding the ways to extend their lives and to keep them in our families.

Our families have lost far too many children and youth during the residential and day schools era, which lasted for over 125 years. We have lost too many children and youth to child welfare agencies. What we want is to find ways to keep individuals, families and communities strong and to be embraced in our languages, in our cultures and in our traditional ancestral knowledge.

We want to establish the programs, services and supports that our youth and persons with disabilities need. They do not need to find a way to die; they need to find ways to re-establish their self worth to combat mental illness. We want them to be well. They want to be well. We want them to be well in their emotional, spiritual, physical and mental aspects. We want them to be well in the holistic views of our ancestors within the teachings of the medicine wheel. We want to see the world, Mother Earth and life that she sustains from the values of our ancestors through the Wabanaki world view of respecting all life.

We don't need or want to establish more ways for indigenous youth to die. There's enough death in our communities and families already. There are already enough existing threats.

There is so much systemic discrimination in the Canadian medical system. I remember, and we should all remember, Joyce Echaquan and the humiliation she experienced, which contributed to her unnecessary death in a hospital. Ms. Echaquan, sadly, is only one example of the indigenous people who have died due to systemic racism. There are many more in this country.

I reached out to indigenous youth last week on MAID. Their fear was immediate. Their fear of MAID lasted throughout our conversation. They spoke of mental wellness challenges, of youth suicides in their families and communities. They wanted to speak about how we can help our youth to be mentally well and speak the languages of their ancestors as a way to improve their self worth, value and identities. They spoke about how their youth group and conversations are part of their healing. Talking is healing. Being around people you trust and who care about you is healing.

My mother spent her later life helping to heal Wolastoqey children by teaching them the Wolastoqey language in the school they attended. The school was a part of the provincial education system, located in the city, not on a reserve. She's passed into the spirit world now, but her legacy continues in the lives of those children she positively impacted through the language and cultural learning.

One of our regional partners stated:

All indigenous youth have specific lived experiences with intergenerational trauma stemming from displacement/forced relocations from ancestral lands, the Indian Act, Indian Residential School, the foster care system, etcetera. For these reasons, we know and have empirical evidence to show that Indigenous youth mental health is poorer compared to non-Indigenous youths' mental health.

Last week the Wabano Health Centre and the Ottawa Aboriginal Coalition released a new report focused on racism in the health care field titled “Share Your Story, Indigenous-Specific Racism in Health Care Across the Champlain Region.”

Amongst the findings they presented in the report are these:

There were five stereotypes that emerged from the data: 1. Indigenous people are racially inferior; 2. Indigenous people are diseased, addicted, and mentally unwell; 3. Indigenous people are a burden; 4. Indigenous people are angry and aggressive; 5. Indigenous people are bad parents.

I recommend that you invite the Wabano Health Centre and the Ottawa Aboriginal Coalition to present to you as well.

Woliwon psi-te wen. Thank you, everyone.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Mr. Saulis.

I will now hand it over to my fellow chair, Senator Martin.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

We'll begin with questions for a five-minute round. The first questioner will be MP Dominique Vien.

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

Thank you very much, Madam Chair.

I want to thank our guests for agreeing to meet with us this evening despite the late hour.

Good evening, Ms. Duranleau, and thank you for being here.

The use of medical assistance in dying for persons living with an intellectual disability is obviously a concern, and, if my understanding is correct, you're opposed to it.

My knowledge in this field is limited, but I understand there's a gradation across the spectrum of intellectual disabilities. Is that in fact the case?

[Amélie Duranleau]

Yes, there is a gradation.

We're talking here about medical assistance in dying for persons who are incapable of making decisions regarding their health. I want to emphasize that they represent only a segment of persons with intellectual disabilities. I must emphasize that many persons with intellectual disabilities would be able to request MAID on their own because they're capable of making decisions concerning their own lives.

I'm going to yield the floor to my colleague, Mr. Ragot, so he can round out this part of the answer.

[Samuel Ragot, Senior Policy Analyst and Advocacy Advisor, Quebec Intellectual Disability Society]

Thank you.

Some people with mild intellectual disabilities are entirely capable of requesting medical assistance in dying for themselves. However, it's important that the decision be made without undue pressure, that the individual truly give free and informed consent, and that the request not be made for economic or social reasons. The request for MAID must truly be made in an end-of-life context in which the person is experiencing intolerable suffering consistent with the current criteria of the first component of Quebec's Act respecting end-of-life care.

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

So, as I understand it, that's an essential condition for you.

[Samuel Ragot]

That's absolutely the case.

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

What kind of abuses are you afraid of?

[Samuel Ragot]

That's an excellent question.

Sometimes, for example, we get calls from aging parents who have children with intellectual disabilities who are in their fifties. In some cases, the services offered are minimal, or even non-existent, and the parents wonder what will happen to their children once they themselves have died. Sometimes the parents tell us that they would decide to give their children access to medical assistance in dying if they could. It's tragic.

This raises some major issues. These are obviously tragic situations, and the solution probably isn't medical assistance in dying but rather a social response, to provide services, housing and financial security to those disabled individuals, as we mentioned earlier.

As I said, we're unfortunately hearing these things more and more frequently.

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

Do you think that persons with intellectual disabilities who are aware of medical assistance in dying are so because they've inquired on their own or because someone has told them about it?

[Samuel Ragot]

That's a difficult question to answer without making unfair generalizations.

We've definitely read in the newspapers about people who are offered medical assistance in dying for lack of a better solution or for a lack of services. In light of those incidents, could we say that medical pressures may be brought to bear based on a certain undervaluation of the lives of people with disabilities? That must definitely occur. Can certain persons make valid and legitimate requests by exercising free and informed consent? That surely happens as well.

The greater concern is obviously undue pressure and the fact that MAID may be proposed by default or for lack of a better option.