Medical Assistance in Dying Committee on May 16th, 2022

[The Joint Chair, Liberal, Marc Garneau]

Good evening, everyone.

I am calling this meeting to order, hopefully before something else happens. I want to thank everyone who has been so patient this evening, waiting for this meeting to get going.

Welcome, everyone, to this meeting of the Special Joint Committee on Medical Assistance in Dying. I would like to begin by welcoming members of the committee, witnesses and those watching this meeting on the web.

I am the House of Commons joint chair of this committee, and I am joined by the Honourable Yonah Martin, the Senate's joint chair.

Today we continue our examination of the statutory review of the provisions of the Criminal Code relating to medical assistance in dying and their application.

As you know, we have certain sanitary measures in effect following the advice of the Board of Internal Economy, and I expect everyone to respect those rules this evening.

As a reminder, all comments should be addressed through the chair. If you have a point to make, you can use the “raise hand” feature. We provide translation in both official languages. You may choose the language of your choice.

The way we do things is to start off with the witnesses each giving a five-minute statement, after which we will proceed to a question period.

Tonight we have the pleasure of having, as individuals, Mr. Andrew Adams and Mr. Ghislain Leblond, former deputy minister. From the Disability Justice Network of Ontario, we have, in person this evening, Sarah Jama, executive director.

Welcome to all three of you. We look forward to hearing what you have to say. We will begin with opening remarks from Mr. Adams, followed by Mr. Leblond, followed by Ms. Jama.

Mr. Adams, the floor is yours. You have five minutes to make your initial presentation.

[Andrew Adams, As an Individual]

Thank you very much. It's a pleasure to be here.

I'm a person with a chronic illness and disabilities. I've had a condition that causes deep abdominal spasms, along with other terrible symptoms, for a very long time. I often experience intense, long-lasting episodes that remind me of being poisoned. I sometimes say I have seasons of pain, as an episode can last for a few months at a time. I have lived in British Columbia all my life and feel very much shaped by open-minded west coast values. Therefore, I support access to choice.

As the law changed in Canada to more closely reflect the Carter decision, I decided to apply for an assisted-dying assessment. The new law, Bill C-7, made it legal for people like me, for whom death is not reasonably foreseeable, to have the possibility of MAID. Putting suffering at the core of the law shows great compassion and humanity. The ability of each of us to say, “Enough is enough”, when suffering becomes too much, is an essential liberty.

The dysfunction of my body has often felt like a prison. In applying for and being approved for MAID, I have taken responsibility for myself. I feel less worry, and a sense of overall relief permeates my days. I don't feel the need to use this choice right now, but I am very happy it is there. The steady worsening of my condition has reduced my capacity to function in my daily living activities and lowered the quality of my life.

No amount of mitigating these painful abdominal episodes has alleviated my predicament. I feel that I now have more of the tools needed to face the long-lasting difficulties ahead of me. I am enormously proud of my fellow citizens. Thank you for allowing this option to exist in Canada for people, like me, who suffer continuously in life.

I have had no say in deciding whether my body would trap me in intolerable suffering. I have coped with the cards I was dealt. Knowing I can access a safe and serene exit from my suffering is like reflecting upon some beautiful poetry. Suddenly, there's a rhyme and reason to my everyday. I feel a new sense of acceptance in dealing with my daily challenges—an added emotional benefit this medical care has provided me.

We all want to feel a sense of security in this world. MAID, as an option, has provided that sense of security to me. I feel the reduced stress and increased peace of mind have allowed me to better cope with my limitations. As a result, I tend to have an anxious attachment to this choice and I'm skeptical about calls to impose increased barriers. People with disabilities must not be treated as a monolith, but rather as individuals. The fear some individuals may have of MAID should have no negative impact on access to choice. I am my own person and do not want to be grouped together with others.

That said, when discussing protections for persons with disabilities, I have a few suggestions for policy improvements.

First, use some form of means testing that includes assessing whether the person has housing and supports from family or service agencies, etc., before approval is granted.

Second, allow voluntary self-exclusion for those who want to opt out of MAID. The individual could choose a fixed amount of time to have this exclusion in place and could renew it as needed or desired. I came about this idea because I know that, at casinos and similar establishments, people can have a self-exclusion and just don't have any access to that particular activity.

Third, quickly implement the Canada disability benefit to reduce poverty.

Overall, I hope to see continued balance between patient access and reasonable safeguards. That has to be maintained.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Mr. Adams, for that personal testimony.

We'll now go to our second witness.

Go ahead, Mr. Leblond. You have five minutes.

[Ghislain Leblond, Former Deputy Minister, As an Individual]

Thank you, Mr. Chair.

Good evening, everyone.

My name is Ghislain Leblond, and I am 77 years old. I had the opportunity to spend most of my career in the public service, including as associate deputy minister in Ottawa and as deputy minister in Quebec City.

I had to retire at the age of 48 because I have a degenerative neuromuscular disease that paralyzes me. I have been in a wheelchair for 20 years, so you'll understand that tonight's discussion is of great interest to me.

I have also been a very active participant in the process that led to the adoption in Quebec of the Act respecting end‑of‑life care, including medical assistance in dying.

Given my situation, I am a potential candidate for MAID.

Thank you for having me.

Most importantly, I want to thank you for the work you're doing.

You are honouring your duty as members of Parliament and senators by tackling an issue as important as medical assistance in dying.

You're facing problems that aren't always easy to solve. Thank you for tackling the challenge.

You're a lucky bunch of people, because it's not given to everybody to have the opportunity to make decisions that will improve the lives of thousands of people, thousands of our fellow citizens, our fellow Canadians.

One of the things I'm interested in is the idea that people with physical disabilities need greater safeguards than the rest of the population. This is an idea that is floating around. I would like to talk to you about it in the discussion that will follow.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much for your testimony as an individual, Mr. Leblond.

I'll now give the floor to our third witness.

Ms. Sarah Jama, we go over to you for your opening statements. You have five minutes.

[Sarah Jama]

Thank you.

The last time I spoke in front of the Senate about MAID, the arguments that I, along with Dr. Naheed Dosani, Gabrielle Peters and many others, posed were that disabled people who were suffering because of systemic failures due to systemic ableism would be negatively impacted by this expansion.

People who are living in abject poverty, who are scared to enter our horrendous long-term care institutions, who were on wait-lists for treatments or who couldn't see a reason for living because of the lack of accessible affordable housing would use this expanded MAID as their only option. I spoke about Chris Gladders the last time I was here, a man from Hamilton, Ontario, who used MAID because he was left sitting in his feces and urine for days at his long-term care home.

Elected officials, you gaslit us for months stating that it was impossible for people to use MAID in these ways due to safeguards. You implied that the rights of people like Nicole Gladu, who testified that she wanted the choice to die with a champagne glass in her hand, was more important than the need to protect folks I spoke about who were being systemically coerced into—

[The Joint Chair, Liberal, Marc Garneau]

Ms. Jama, could you slow it down, please? The interpreters have to translate your remarks, so speak a bit more slowly.

[Sarah Jama]

Yes.

[Luc Thériault, Bloc, Montcalm, QC]

Mr. Chair, since you interrupted the witness, I'd like to take the opportunity to ask her to speak a little quieter, as well; otherwise we can't hear the simultaneous interpretation properly when we are in the room.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Could you speak at a slightly lower volume as well? The translation is going into some people's ears and they're hearing your English, because you're so close to them. You can speak more slowly and perhaps lower the volume a little bit.

Perhaps the technicians can lower...if there's anything they can do.

[Sarah Jama]

I'm a very loud person. I apologize.

[The Joint Chair, Liberal, Marc Garneau]

No problem. It's a loud subject.

[Sarah Jama]

Can I start?

[The Joint Chair, Liberal, Marc Garneau]

Yes, please.

[Sarah Jama]

You implied that race and poverty had very little to do with freedom and choice. Nicole Gladu has since died naturally, not using MAID, yet her testimony allowed for the death of Sophia, who shared in death that “The government sees me as expendable trash, a complainer, useless and a pain in the ass.” There's also the death of Denise, who explained that she applied for MAID essentially because of abject poverty. These are two among many others who used it only because the government funded access to death over their ability to have food, shelter and a sustained life.

Due to your unwillingness to understand the adverse impacts of an expanded MAID, more disabled people have died since the last time I spoke to you, who would otherwise have been alive. Across this country, social assistance rates further debilitate and harm disabled people through enforced poverty. Across this country, it can take years to access pain clinics, therapy, specialists, primary care practitioners and palliative care. Palliative care is so chronically underfunded that it's considered a privilege.

Across this country, disabled people are forced into long-term care facilities, where the conditions are so egregious and fraught with instances of physical, emotional and sexual abuse, and a lack of nutritious food options and proper hygiene practices. There is so much that we have normalized the death of 20,000 institutionalized disabled people from COVID-19. Across this country, there have been a reported 3.4 million COVID cases. We are seeing a mass debilitation of the most marginalized Canadians responding only with greater access to death.

The low estimate is 300,000 Canadians who are suffering from long COVID who are now newcomers to the disabled community and raised by an ableist society. What they are seeing as the response to their newfound impairments is the acceptance that to be disabled is a fate worse than death. That comes directly from this committee.

What have you done to respond to the growing disabled population who don't have dementia, the population who isn't sure what this new life of debility, ableism and, perhaps, unemployment means to them?

On the question of advance directives, we must acknowledge that people can and will often change their minds, even after consenting to MAID. It is ableist to assume that people would be 100% unwilling to live in bodies that are deemed as less functioning. True choice is the ability to change your mind. It is also worth noting that dementia is one disability that has been brought up often by this committee in this conversation on advance directives, and this disability impacts Black people disproportionately, yet this voice has been left out.

On the question of mature minors, we must remember that mental illness and suicidality are at an all-time high for youth across Canada, and they disproportionately impact disabled youth. It takes time to address, especially as a young person, a disabled life and research it. Until we are sure that have measures that prevent the implicit coercion of youth due to pressures such as bullying, shelter, poverty rates and a lack of access to resources, I recommend that you limit any conversation of MAID with children, especially in relation to track two.

Lastly, it's important to note that last week, the Canadian Human Rights Commission, in response to reports that disabled people are in fact—like we said last year—using MAID to escape systemic failures, said that medical assistance in dying cannot be a default for Canada's failure to fulfill its human rights obligations. They said this because this is what you have allowed, despite the warnings.

How will you make amends for the lives that have been lost so far due to systemic coercion, because of your decision to expand MAID specifically to the disabled community?

The right of an individual's needs should not supersede the harms faced by others.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Ms. Jama.

That concludes the opening statements.

We'll now go to the question period, and I will hand it over to my co-chair, Senator Yonah Martin.

[The Joint Chair, Hon. Yonah Martin (Senator, British Columbia, C)]

Thank you.

Thank you to all of the witnesses for your testimony.

We'll begin the first round with five minutes of questions and answers with Mr. Barrett.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Thank you, Madam Joint Chair.

Thank you to the witnesses for your testimony and for giving us your time and experience this evening.

My first question will be directed through the joint chair to you, Ms. Jama. You talked about having appeared before the committee and having personally spoken to senators and members.

Do you feel that disabled Canadians have been adequately consulted about MAID legislation?

[Sarah Jama]

Absolutely not. In this panel alone, of four representatives, two are from Dying With Dignity. Why am I the only representative from a disability-based org? Why is this the only day that we talk about disability rights when it impacts all of the sections that I have talked about. This shows that we are being left out on this committee and we have been left out systemically this entire time and throughout this process.

On top of that, the brief process of submitting only a thousand words leaves out disabled people who can't submit their thoughts in a written format, who don't have access to Internet or who would prefer to communicate using video. We asked this committee in writing what we could do to include other disabled people and we got no response.

This committee has shown no desire to reach out to disabled people, other than the people who are afraid of dying, but not people who are living with disabilities. It's a shame and it's been like that this entire time.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Thank you, Ma'am.

Again, I'd like to follow up on one of the comments you made in your opening remarks. You made the contention that the MAID framework is ableist in nature and I'd like to ask you why. Perhaps you can expand on that for me, please.

[Sarah Jama]

This is not a new understanding that has come from the disability community. Over 200 organizations this entire time have spoken about the fact that this is ableist. We expanded MAID specifically to people who are living with disabilities and who are seen as suffering. Many of us struggle day to day, but that doesn't mean that my needs should be met by simply being offered death. I'm terrified, as someone with mental health and physical disabilities, to enter a doctor's office. I'm terrified that I will be offered MAID as a form of treatment, when I already deal with suicidality.

You're not listening to those who are already living with disabilities. You're predominantly hearing from people who are afraid to be disabled in the future. Those two things are not the same. Disabled people have already died because of those decisions. We can't lose another single life of somebody who should have been fed or housed or offered therapy. It's not enough to say these things will come later because we already know that 200 people who were not terminally ill have died. Many were people whose needs were not being met elsewhere.

We can't allow other people to continue to die.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Thank you.

Again, through the joint chair to Ms. Jama, why do issues of race and poverty matter in this conversation, in your opinion?

[Sarah Jama]

Like I mentioned earlier, you guys spend a lot of time talking about dementia, but dementia disproportionately impacts Black and racialized people who are caregivers and who are staying at home supporting families. You've not heard from Black people living in that situation. Black people are less likely to send family members into long-term care institutions because of how volatile those are, with mistreatment and racism there, too.

Black people who are experiencing medical ableism and medical racism are already worried about being coerced into their treatment plan. For me, even the concept of rejecting surgeries was very difficult for me when I was a young person.

When you already feel that you're being treated differently or you're being othered because of your race—and we already know that a lot of data says that Black people are mistreated and treated differently when they enter a hospital—and you add that into the conversation around MAID, will Black people be pushed into accessing MAID versus other treatments that should be available? I think yes. I don't think we've done enough research to be sure that Black people won't be disproportionately affected.

Throughout COVID, Black people have been predominantly affected and have comorbidities, so we're not sure how this will impact the most marginalized in our communities, but the voices that you have been listening to are predominantly white. That scares me.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

I have just a quick question, through you, Madam Joint Chair—

[The Joint Chair, Hon. Yonah Martin]

Yes, be very quick. You have about 20 seconds.