Medical Assistance in Dying Committee on May 16th, 2022

[Ghislain Leblond]

Yes, absolutely. That's why I've been very active in advocating for it in Quebec.

I don't think anyone wants to have to resort to MAID. We're all afraid of dying, but what we're most afraid of is how we're going to die and what type of agony we're going to have to face.

Medical assistance in dying isn't an obligation, but a choice among others, and each person makes their own decision based on their situation and beliefs. Having a choice is a great moral relief for me, and also for my family. I've been in a wheelchair for 20 years; my family has been caring for a wheelchair user for 20 years. Knowing that MAID will be available, if I ever have to go there, gives me and my loved ones great moral relief.

[Luc Thériault, Bloc, Montcalm, QC]

Thank you, Mr. Leblond.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

Next we'll have Mr. MacGregor.

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

Thank you, Madam Co-Chair.

Ms. Jama, I think I'll start with you.

As you know, our committee was given a fairly broad mandate from the House to cover five areas. Only one of these is actually going to turn into law. We're studying the issue knowing that in March of next year mental illness as an underlying condition will come into effect in 2023, but the others are fairly broad.

When this committee got under way in April and we had our first couple of meetings, it felt right away like we were doing a fairly rushed job. The House initially gave us a deadline of June 23, and I think it very quickly dawned upon members of this committee that this was just going to be an impossible task. We've now extended it to October 17.

In terms of your testimony today, I remember that in our earlier conversation you were talking to me about the idea of pausing or slowing down. What I'd like you to tell us as a committee is why we should pause or slow down this conversation. Can you expand on that a little more? Could you suggest ways in which this committee could further engage with various members of the disability community over the remainder of the spring, the summer and the fall, just so we have as broad a cross-section of voices as possible?

[Sarah Jama]

Yes. A lot of us don't have the resources that the Dying With Dignity lobby—funded by Margaret Atwood and larger names—has, so by the time that I and many of us learned about the expansion of Bill C-7, we didn't make it to the third reading.

It was an unprecedented 18 months. That's how long it took all of you to make the decision to expand MAID.

I have named the names of people who died not because they wanted to end their lives, but because they had no other options around food, shelter and housing. I understand that the previous speaker did say that none of us want to use MAID and that everybody is afraid to die, but there have already been lives lost, on top of the fact that we know it's been documented and talked about by the Ontario Human Rights Commission that MAID was being offered in jails in place of probation.

We have a moral obligation to stop. Rather than reviewing the harms that have been caused, this committee has spent more time talking about potential expansion. You should have been using this time to look back, and to look at the mistakes and to look at what the rush has caused, especially in light of COVID, especially in light of the despair that a lot of disabled people are feeling around what it means to live as a disabled person right now, where we know that doorknobs were being removed from long-term care homes and where many people couldn't afford to eat. I have met disabled people living in tents who were housed there, who were talking about using MAID—in tents outside, in wheelchairs. This isn't okay.

It's not enough for those of us who want to feel some semblance of comfort to be making decisions for the rest of the people who are not in the room, because guess what? Nicole Gladu died naturally after setting the way for people to use MAID for no other option.

This committee has an obligation to slow down and to talk to more people—to talk to houseless people, to talk to racialized people, to talk to young people and youth—and to not succumb to the force that is the Dying With Dignity lobby, because it's not fair for the rest of us.

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

I want to expand on the minister's mandate letter. She has been tasked with a review of access to federal disability programs. In the previous Parliament, the government introduced Bill C-35, which was going to set up a federal disability benefit. It was introduced on June 21. The government knew that an unnecessary election was coming, so I think that was introduced for show.

We are well into the 44th Parliament. We still have no sight of a federal disability benefit bill coming forward.

In the 45 seconds I have, could you expand on what the landscape is like out there? When we look at federal disability supports, what does the Parliament of Canada really have to tackle to address that issue, because that's a big part of this conversation?

[Sarah Jama]

Disabled people should not be legislated into poverty in every single province. That's what's happening. People can't afford to eat or pay rent.

There are also our health care issues. Why does it take up to two years to access a pain clinic in Ontario? Why are there so many wait-lists? You're making it impossible for us to choose to live, especially those of us who are aging into our disability. It's getting harder and harder, not because we can't do it ourselves, but because there are no resources available and not enough funding in our health care systems. We simply can't afford it.

As much as we're talking about the federal disability benefit, we also need to be talking about our health care systems and their failures. This committee has an obligation to look into that, because it's all connected. If you're going to allow people to kill themselves, look into why they are doing that, and look into our health care systems.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

I will turn it over to Mr. Garneau, for questions from senators.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Chair.

We will start with senators and three minute rounds.

I'll now give the floor to Senator Mégie.

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

Thank you, Mr. Chair.

My question is for Ms. Jama.

I believe I understood from what you said that, when people are in a situation of poverty, for example when they are poorly housed, the first proposal that will be made to them is to receive medical assistance in dying.

I know these people need care. The decision to receive MAID should be made by the person themselves; it shouldn't be imposed on them.

Have you heard any stories of people having MAID imposed on them?

[Sarah Jama]

Yes, there have been stories in the media. There were two cases, and I talked about them in my testimony.

One of them was a woman named Denise who was looking for affordable housing. Her friends were fundraising for her, and it still wasn't enough. Her only option was to use MAID, because where she was living was causing her disability to flare up so badly, and she also couldn't afford to eat.

When I talk about systemic coercion, I'm not saying somebody's holding a gun to your head. I'm saying that the systems are working together to provide no other options for people to choose life, and we're allowing that to happen as elected officials. It is still coercion whether or not someone explicitly told you to do it. We are voting on situations that don't allow housing supports but allow death as an option first.

[Marie-Françoise Mégie]

As you've heard, other people with intolerable pain or disabilities are comfortable with the idea that they will be able to request medical assistance in dying when they need it. I don't get the impression that these people are feeling pressure or that they will be forced to request MAID when there is no more medicine to give them.

I'm having a bit of trouble following this idea, but maybe it's true that when you are poorly housed, you may be inclined to request MAID.

What do you think?

[Sarah Jama]

When you have lived without, it's not hard to imagine that people wouldn't want...It's getting harder and harder to live. These cases were all over the Toronto Star. People were saying, “I have really tried hard to survive, but MAID is my only way out, and I wish it wasn't. I wish I had housing, because I would have stayed on this earth.” That's a coerced choice. It's a choice made, because there was no other option available, so it's not really a choice.

We have seen in this country where forced sterilization was a thing against disabled people, including institutionalization, and the idea that many of us don't want to send our families to long-term care homes, but it's our only option, because we can't afford anything else. All these things are examples of coercion.

While it may be hard for specific committee members to imagine why someone would make that choice, it's because maybe you have not been without food, shelter, housing, or had to live in these situations. I have, so I have come all the way here to tell you that it's true.

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

Senator Kutcher.

[Stan Kutcher, Senator, Nova Scotia, ISG]

Thank you very much, Mr. Chair.

I have two questions. The first one is for Ms. Jama. In MAID assessment, the assessors, as we have heard already, pay very careful attention to the treatments people have had and treatments that are suggested as possible.

Many providers have suggested that this kind of assessment should also include addressing structural inequalities—for example, the need for housing or income assistance—and that those should be integrated into every single MAID assessment so that they don't coerce people where they shouldn't be coerced. Would you suggest or consider that this thing should essentially be a part of any MAID assessment to make sure people aren't being coerced?

[Sarah Jama]

Absolutely.

At the same time, I think about the case in B.C., in which a woman accessed MAID under the 90 days and is being investigated by the RCMP. She was given MAID and she didn't access treatment for her mental health disabilities. That's being investigated.

So while we can keep saying that we're going to add safeguards, if we lose one life, that's enough for us to pause and evaluate why that happened. I am somebody with mental health issues myself. I have been in treatments over and over again. They're difficult to sustain when you're also trying to continue to live. Sometimes I get so overwhelmed and I'm like I don't want to be here. That changes maybe after the 90-day period, but it's hard.

I just mean that we need to have more options available, because it took me a year to get into proper therapy. And even then, I could have decided to do something else.

So, one, we're losing people because they're—

[Stan Kutcher]

I'm sorry but I have a question for someone else.

[Sarah Jama]

Okay.

[Stan Kutcher]

I think you answered that question very well. Thank you so much.

I have a question for our first witness, Mr. Adams.

You've done a MAID assessment but you have not yet chosen to move towards MAID. You said something that I didn't quite catch about reduced stress and improved state of mind. Did you mean that you were getting actual relief from intolerable suffering simply by having gone through that process and having that option? I couldn't quite understand that.

[Andrew Adams]

Yes. I'm trying to explain that the knowledge that I am assessed and approved has changed the way I experience my condition psychologically. I feel just intense relief. As a result, I have more strength to endure my episodes.

[Stan Kutcher]

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much.

Go ahead, Senator Dalphond.

[Pierre Dalphond, Senator, Quebec (De Lorimier), PSG]

Thank you, Mr. Chair.

Thank you to our panellists. I think this is very important, and your testimony is very important.

My question is for Mr. Leblond.

As you have heard, the dilemma we always face is that some groups may be disadvantaged by the system. This makes the options available to them less attractive than the ones you've experienced. You're an educated man. You were deputy minister in Quebec City and associate deputy minister in Ottawa.

What do you say to people who say that no one with a disability should have access to medical assistance in dying, in order to protect those who cannot give consent that seems as valid as yours?

[Ghislain Leblond]

I don't see the connection between being physically disabled and being able to think. It's as if physical and intellectual disabilities were perceived in the same way. That's the equivalent of what was said during debates on whether women, simply because they were women, were smart enough to vote. Here we are with the same kind of arguments in 2022, saying that people with physical difficulties are unable to make decisions for themselves.

It is undeniable that we have immense problems socially, economically and in the health care system. MAID cannot make up for all these problems. It's not a panacea or a generic remedy. I understand that people have a hard time accepting this idea, but it shouldn't prevent those who meet the criteria set out by the Supreme Court from using it.

[Pierre Dalphond]

Thank you.