Medical Assistance in Dying Committee on Nov. 25th, 2022

[The Joint Chair, Hon. Yonah Martin]

Thank you, Dr. Frazee.

Next we'll go to Mr. Thériault for five minutes.

[Luc Thériault, Bloc, Montcalm, QC]

Thank you, Madam Chair.

I would describe all three instances of evidence we heard this morning as ad hoc evidence, in every sense of the term. I think that since the beginning of the hearings on protecting persons with disabilities, all committee members were in agreement that more needed to be done for them.

I have frequently put forward the idea that impairment is individual and that disability is always, at the outset, social. It is accordingly clear that more must be done. Persons with disabilities experience discrimination and stigmatization. They don't have equal access to care and programs. It's difficult for them. That makes them victims once.

Further to what I've heard from the witnesses, it appears that you would like them to become victims a second time, this time of the state. In other words, at the most personal and private moment in life, after experiencing what they found to be beyond tolerable, that the state should deny them access to medical assistance in dying, thereby taking away their freedom to be able to decide for themselves what's acceptable to them in their own lives.

No one should be able to decide on someone else's quality of life. Only they themselves should be able to make that decision. By acting in this way, the state would be discriminating against them, making them victims for a second time.

Let's follow through on this line of argument. It says that the track one issue, meaning the foreseeable death criterion, should be strictly reintroduced. In keeping with the logic you described this morning, should these people also be denied the right to refuse care, even if that right is, from the ethical standpoint, considered to be a good medical practice? What would most likely happen is that these people would have no options other than refusing to eat, for example, which would lead to dehydration until they reach the point of imminent death, and when death is only a few hours away, to have medical assistance in dying administered. That has something to do with the distress you were talking about today.

Saying that the solution for people who are being discriminated against, and who do not have equal access to a full and meaningful life in society, is to take away their right to receive medical assistance in dying following an assessment, implies that their only option is suicide when their suffering becomes irreversibly intolerable.

Is it up to the state to decide what the tolerable threshold of suffering is for another human being?

Would anyone like to take this question? Ms. Grant?

[Prof. Isabel Grant]

Sure. I'll make a couple of comments.

None of us have spoken to you today about getting rid of track one. Dr. Frazee mentioned the importance of the word “natural” and that stopping eating is not a natural death.

I think the flaw here is that track one is available to everybody at the end of their lives. Limiting MAID to track one does not discriminate against people with disabilities. They too, at the end of their lives, will have access to track one.

What discriminates against people with disabilities is saying, “The law of murder, the law against aiding suicide doesn't apply to you because your deaths are a benefit to you. When you die, that's a good thing.” We're saying you cannot say to people with disabilities that their deaths are a social good that their government should promote when their deaths are not reasonably foreseeable.

We agree that people with disabilities should have access to track one MAID as other Canadians do—I believe that—but not when they are not at the end of their lives. It's not the state's job to kill people with disabilities because they're suffering; it's the state's job to try, to the best extent possible, to alleviate that suffering in some way, or to mitigate it.

[The Joint Chair, Hon. Yonah Martin]

Thank you. It's near the end.

Lastly, we have Mr. MacGregor. You have the floor for five minutes.

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

Thank you very much, Madam Co-Chair, and thank you to all of our witnesses for joining us today.

I too am joining you from British Columbia, so I appreciate how early it is.

This has absolutely been a very difficult subject for this committee to grapple with, and we certainly have heard some heart-wrenching testimony. We know that far too many persons with disabilities in Canada are living below the poverty line.

I have a constituent who's a very real activist in this field. He coined a term, “legislated poverty”, and has repeatedly urged the federal government to do more, especially with economic supports because of that disability level. We know that it exists.

Ms. Linton, I'd like to start with you because of the research field you've been involved in.

For clarification, do you have some statistics to share with the committee on how many disabled people are living in institutions? What percentage of the larger disability community is that?

[Megan Linton]

Thank you for that question.

One of the challenges is that the government has not conducted a census on the institutional population since 1991 when it did the HALS institutional survey, the Health and Activity Limitation Survey. At that point it was beneficial to do that survey, following a committee hearing much like this, which revealed the significant impacts of institutions and particularly disability obstacles in Canada.

Since that time, we haven't had up-to-date information on the size of the institutionalized population. Right now we know that over 100,000 people are living in institutions. If we include long-term care facilities, it's around 190,000. Those are numbers pulled from the Stats Canada survey on residential care facilities.

A challenging part of understanding what is happening in institutions is that the Canadian disabilities survey doesn't actually go to institutionalized people. As a result, we don't know what's happening inside institutions. We also don't know how specific government bills targeting ending disability poverty are going to impact institutionalized people, because in institutions you receive a different level of legislated poverty. In Ontario that is about $149 a month, and across Canada it peaks at $300. Imagine living on $300 a month.

We don't have a lot of numbers, and I think that's one of the most concerning aspects of this. We don't know the size of the population afflicted by institutionalization, and we also don't know the size of the population, particularly the population of people labelled with mental disorders that will be expanded under the changes to track two.

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

I'm sorry to interrupt. I only have a minute and a half left and I want to add one more question for you to consider.

We know from the pandemic that the conditions in long-term care homes became very widely publicized. It certainly sparked talk about instituting national standards in long-term care homes. Could you also add to your answer what the conditions are like?

I know that some institutions must be very well staffed and have incredible support services. There must be a whole continuum. Can you add a bit on that in your answer as well, please?

[Megan Linton]

Yes. While we learned a little bit about what was happening in long-term care facilities through reporting through COVID-19, the other types of institutions for disabled people, particularly unregulated congregate settings like domiciliary hospitals, homes for special care and other residential care facilities, were not exposed to the same level.

What we do know is that in the many unregulated institutions where, in Ontario alone, tens of thousands of disabled people live, the conditions include cockroaches and four people to a room. During COVID, they were told to sleep head to foot to prevent the spread of infection. In those institutions, it's about 100% that there are going to be pests—cockroaches, bedbugs—rotten food and levels of staffing that are one poor person who is paid about minimum wage. The conditions inside these institutions are really horrifying, and we continue to see fires and deaths en masse due to COVID and other infections.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Ms. Linton.

We will go into our next round of questions.

I'll turn this over to my co-chair, Mr. Garneau, for questions from senators.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Martin.

We will begin with Senator Mégie.

Senator, you have the floor for three minutes.

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

Thank you, Mr. Chair.

First of all, Ms. Frazee, what would you say to the disabled people who came here and told us that they did not want to be considered vulnerable and unable to make their own decisions, and did not want to be treated paternalistically?

There is a whole network of disabled people who are often encountered. Some may think like you, but what would you say to those who are demanding that they be allowed to decide for themselves?

Secondly, Ms. Linton or Ms. Grant, if the government were to introduce a guaranteed minimum income program for disabled people, do you think that would deter them from requesting medical assistance in dying?

[Dr. Catherine Frazee]

Thank you.

If I may speak to the member's question very briefly, to a disabled person who says to me, “I am not vulnerable and I am entitled to make my own decisions”, I say, “I agree 100%. That is why I am working very hard to make it clear that our entitlements extend to the full protection of the Criminal Code, and if we could take more than 60 seconds to have a conversation, let's talk.” That would be my answer.

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

There's about one minute left, Dr. Grant, if you would like to answer the second question.

[Prof. Isabel Grant]

I think there are a number of levels to that.

I think that with the harms that Dr. Frazee has outlined and that Ms. Linton has shown us, no, I don't think a guaranteed minimum income would mean that it was okay to kill disabled people who are not at the end of their lives. I think the inequalities and the harms of track two MAID that Dr. Frazee has outlined are ongoing, and they are ongoing not only for the people who are choosing MAID therapy but for all the people who feel their lives have been devalued by this committee and by the legislation passed by this government, so I do not think—

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

[Prof. Isabel Grant]

I'm sorry. Go ahead.

[The Joint Chair, Liberal, Marc Garneau]

Next is Ms. Linton. Be very quick, please.

[Megan Linton]

I do not think that a guaranteed income program would lessen the likelihood to request MAID. I think it could improve many people's lives, but I don't think it would result in the changes to the care system that would allow for people to live in communities or live the way they want, so no.

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

We'll now go to Senator Kutcher.

[Stanley Kutcher, Senator, Nova Scotia, ISG]

Thank you very much, Chair.

I have questions for Dr. Linton and Dr. Grant. There are two questions, so I'd like to try to get to both of them.

None of us want persons with disabilities to seek MAID because of a lack of resources. We all support living with dignity. However, I'd like you to consider a different scenario. Should a competent person with a disability who is socio-economically secure and has no need for additional services be allowed to request and receive MAID?

[The Joint Chair, Liberal, Marc Garneau]

We'll go to Dr. Grant first.

[Prof. Isabel Grant]

I would say no, not if they are not at the end of their life. A competent non-disabled person does not have a right to receive MAID. I don't see why a competent disabled person would have a right to receive MAID.

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

Ms. Linton, go ahead.

[Megan Linton]

I don't think that someone being competent or having socio-economic supports means that they should kill themselves or let the state kill them.

[Stanley Kutcher]

What about a disabled person in the same situation who has severe and chronic unremitting pain and has been intolerably suffering for decades? Should that person be denied access to MAID because they have a disability?