Evidence of meeting #28 for Medical Assistance in Dying in the 44th Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was disability.

A video is available from Parliament.

On the agenda

MPs speaking

Also speaking

Heidi Janz  Associate Adjunct Professor, As an Individual) (via text-to-speech software
Jessica Shaw  Associate Professor, University of Calgary, As an Individual
Tim Stainton  Director, Canadian Institute for Inclusion and Citizenship, University of British Columbia, As an Individual
Joint Chair  Hon. Yonah Martin (Senator, British Columbia, C)
Marie-Françoise Mégie  Senator, Quebec (Rougemont), ISG
Stanley Kutcher  Senator, Nova Scotia, ISG
Pierre Dalphond  Senator, Quebec (De Lorimier), PSG
Pamela Wallin  Senator, Saskatchewan, CSG
Liana Brittain  As an Individual
Karen Ethans  Associate Professor, Internal Medicine Section, Physical Medicine and Rehabilitation, University of Manitoba, As an Individual
David Shannon  Barrister and Solicitor, As an Individual

6:30 p.m.

Liberal

The Joint Chair Liberal Marc Garneau

Good evening, everyone.

I call to order meeting number 28 of the Special Joint Committee on Medical Assistance in Dying.

I would like to begin by welcoming members of the committee, witnesses as well as those watching this meeting on the web.

My name is Marc Garneau. I am the House of Commons joint chair of this committee.

I am joined by the Honourable Yonah Martin, the Senate joint chair.

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

I have just a few administrative remarks before we get going. I remind members and witnesses to keep their microphones muted unless recognized by name by one of the joint chairs, and all comments should be addressed through the joint chairs.

Also, it is very important that when you are speaking to please speak slowly and clearly for the benefit of the interpreters. Interpretation in this video conference will work like an in-person committee meeting. You have the choice at the bottom of your screen of either the floor, English or French.

With that, I would like to welcome our witnesses for panel number one, who are here to discuss protections for persons with disabilities.

We have, all as individuals, Dr. Heidi Janz, an associate adjunct professor, who is with us by video conference; Dr. Jessica Shaw, an associate professor, also by video conference; and Dr. Tim Stainton, director of the Canadian Institute for Inclusion and Citizenship at the University of British Columbia.

Welcome to our three witnesses. Thank you for joining us this evening. The process we follow is that you will each be given five minutes to make introductory remarks, and then we'll proceed with questions.

We'll start with Dr. Janz. You have five minutes.

6:30 p.m.

Bloc

Luc Thériault Bloc Montcalm, QC

Point of order, Mr. Chair.

We have a sound problem. No matter how high I set the volume, I can barely hear the interpreter. Can we get this fixed?

6:30 p.m.

Liberal

The Joint Chair Liberal Marc Garneau

Okay.

For the witnesses, just stand by. We're having a little sound problem within the room here. We'll be with you very shortly.

We'll pause until we can address the problem brought up by Monsieur Thériault.

6:35 p.m.

Liberal

The Joint Chair Liberal Marc Garneau

We're reconvened. We will start with Dr. Heidi Janz.

Dr. Heidi Janz, you have the floor for five minutes, please.

6:35 p.m.

Dr. Heidi Janz Associate Adjunct Professor, As an Individual) (via text-to-speech software

Honourable committee members, two years ago, I was one of the Canadian disability rights advocates who testified before the parliamentary justice committee studying Bill C-7, which would expand eligibility for medical assistance in dying to people with illnesses and disabilities whose death is not reasonably foreseeable.

We testified that if this expansion of eligibility for MAID went ahead in a Canadian society plagued by systemic ableism, death by MAID would quickly become a socially accepted path of least resistance for ill and disabled people who are unable to access sufficient supports to live self-determined lives with dignity in the community. Sadly, our warnings were met with a collective shrug, and Bill C-7 was passed into law.

Today, I will offer evidence that Bill C-7's expansion of eligibility for MAID is, in fact, resulting in increasing numbers of ill and disabled people turning to MAID as their only alternative to abject poverty and/or incarceration in a long-term care facility. My hope, faint though it may be, is that you, as Canada's policy-makers, will finally recognize that Canada's current MAID regime is, in fact, eugenics disguised as autonomy, and take bold and courageous action to stop the injustice.

A Hobson's choice is defined as a situation in which it seems that you can choose between different things or actions, but there is really only one thing that you can take or do. Contrary to the claims of some MAID enthusiasts who have testified before this committee—think Dr. James Downar—in the year and a half since Bill C-7 was passed, we have seen death by MAID become a Hobson's choice for growing numbers of ill and disabled Canadians.

Among these are Chris Gladders, age 35, who died by MAID in January 2021. He was battling Fabry disease, a genetic condition which affects the body's ability to break down a specific fatty acid and causes a number of side effects. He had two daughters; Hailee, 13; and Savannah, five. He lived in a long-term care facility in Niagara, Ontario. His brother reported that at the time of his assisted death, “The bedding hadn't been changed for weeks. There was feces on the bed. There was urine on the bed. There was urine and feces on the floor, the room was absolutely disgusting”, and that the day before his death “He pulled the call bell beside his bed. I was on the phone with him for 40 minutes and nobody answered that bell. That was his last night.”

Equally disturbing is the case of Sophia. Sophia was the preferred pseudonym of a 51-year-old Ontario woman who had multiple chemical sensitivities. She underwent a medically assisted death after her desperate search for affordable housing free of cigarette smoke and chemical cleaners failed.

"The government sees me as expendable trash, a complainer, useless and a pain in the ass", Sophia said in a video filmed on February 14, 2022, eight days before her death.

She died after a frantic effort by friends, supporters, and even her doctors to get her safe and affordable housing in Toronto. She also left behind letters showing a desperate two-year search for help, in which she begs local, provincial, and federal officials for assistance in finding a home away from the smoke and chemicals wafting through her apartment. Four Toronto doctors were aware of Sophia's case, and they also wrote to federal housing and disability government officials on her behalf. In that letter, the doctors confirmed that her symptoms improved in cleaner air environments and asked for help to find or build a chemical-free residence.

"We physicians find it UNCONSCIONABLE that no other solution is proposed to this situation other than medical assistance in dying", they wrote.

Finally, there is the equally troubling and tragic story of Sathya Kovak. Sathya Dhara Kovak was a Winnipeg woman who died by MAID on October 3, 2022. Kovac lived with amyotrophic lateral sclerosis, ALS. Her condition was worsening, but she felt she had more life to live, just not enough home care support to do so.

“'Ultimately it was not a genetic disease that took me out, it was a system,' Kovac wrote in an obituary to loved ones.”

Her obituary continues, “There is desperate need for change. That is the sickness that causes so much suffering. Vulnerable people need help to survive. I could have had more time if I had more help.”

There is indeed a desperate need for change.

In the words of Canadian disabilities scholar, Jerome Bickenbach, when an individual chooses death as the only viable way to escape an intolerable situation partly brought on by the social environment, it seems “perverse and unfair to say that this is an expression of self-determination or autonomy.” It is incumbent upon you, as Canadian policy-makers, to take courageous action to correct the perversion of justice that is Canada's current MAID regime.

Thank you.

6:40 p.m.

Liberal

The Joint Chair Liberal Marc Garneau

Thank you, Dr. Janz.

We'll now go to our second witness, Dr. Jessica Shaw.

Dr. Shaw, you have five minutes.

November 22nd, 2022 / 6:40 p.m.

Dr. Jessica Shaw Associate Professor, University of Calgary, As an Individual

Thank you very much.

Thank you, Dr. Janz.

My expertise is not in disability, so I am honoured to share this space with my esteemed colleagues. I suspect that I was invited to participate in this panel—and I thank the committee for the invitation—because I have done quite a lot of work with people experiencing homelessness, with substance users and with prisoners, who also face incredibly limited medical and social supports. Because I know that I'm the only researcher in Canada who's done MAID research with prisoners, my statement is going to focus on them tonight. I'll end with a comment about vulnerability as it relates to people with disabilities and also prisoners and many others.

To align with international human rights norms, all prisoners ought to have access to the same standards of health care that are available in the community. This is referred to in the United Nations as the principle of equivalence of care. In Canada, between the legalization of MAID and August 2020, there were 11 requests for MAID by federally incarcerated people. Three were granted, and three deaths were completed. I have had a request in to Correctional Service Canada, CSC, for quite some time, but I don't yet have the new numbers to date.

I want to draw on the research that I've done with prisoners in Canada, as well as on reports from the Office of the Correctional Investigator, to focus on three main points this evening.

The first is that parole by exception for end-of-life care needs to be expanded and more readily approved.

You might be asking, “How does this relate to MAID?” Well, what we informally call compassionate release is actually called parole by exception, and being granted parole by exception in Canada is exceedingly rare. In two of the three known MAID cases for patients in CSC custody, the prisoners had applied for and been denied parole. The third prisoner didn't apply. Apparently he knew that his prospects for release were minimal, even considering his advanced stages of illness.

Especially given that palliative patients pose very little risk to the public due to their bodies and minds being incapacitated by illness, the rationale for denying parole by exception is not clear to me. I would just offer a quote from one of the prisoners I interviewed. He shared, “We had one guy in here... he had dementia and I don't even think he knew he was sick. We have another guy...that's got Parkinson's, and there's no reason...he should be in here. He can barely walk. He's not going to go out and rob a bank or anything. Put him in an institution... even if you have to start a prison old-age-home. One where there is a little [bit] more dignity.” He said, “It's really sad to die in a cage.”

The second point I'd like to make is about the Correctional Service Canada guidelines. They need to align with federal policy, but there are actually several key areas where they don't. In 2017, Correctional Service Canada released "Guideline 800-9, Medical Assistance in Dying”, which provides operational direction for MAID with regard to federally incarcerated people. Canada is the only jurisdiction in the world where assisted dying is legal who does have specific guidelines about how it ought to be implemented for prisoners. I appreciate guidelines for the clarity and consistency they can provide, but in this case, there are a few key areas where the guidelines don't align with federal policy. I'd be happy to elaborate on those more during question period, or I would direct the committee to the extensive report titled “Philosophical and Practical Considerations of MAID for Canadian Prisoners”, which I was commissioned to write for Public Safety Canada last year.

Third, as we move towards allowing MAID for people where mental disorder is the sole underlying medical condition, I think particular attention is going to need to be given to how prison weariness and the psychological suffering caused by imprisonment are addressed. This is because incarcerated people have described their living conditions in prison, the monotony of prison life and the fear of not knowing when or if they'll be released as reasons that might drive them to seek death, whether through suicide or MAID. We know that seeking MAID as an alternative to a prison sentence is not something that's legal in Canada, nor do we see its being legal anytime soon. I think the fact that prisoners are talking about it and potentially seeking it demands our attention.

When MAID eligibility expands to include assisted dying for reasons of mental illness, consideration is going to have to be given to differentiate between MAID requests due to an incurable and ongoing mental disorder and MAID requests due to psychological suffering that could be relieved if the person's circumstances were different. I think that ties into Dr. Janz's opening statement as well.

It's true for both prisoners and the general public that in a country as wealthy and as resourceful as ours, there is no reason someone should feel that the only option they have is death because their medical and social supports are so limited.

That is where I'd shift to a brief statement on vulnerability. My time is probably almost up.

I am going to frame the statement in relation to disability. I think it's perhaps a bit of a different perspective from my colleagues tonight, but it is applicable to anyone who suffers from limited medical or social supports.

I would begin by saying that it's not my place to speak on behalf of people with disabilities, and I would offer that it's not the place of this committee to speak on behalf of people with disabilities either. However, we need to trust people to make decisions about their own lives and deaths, recognizing that if someone is incapable of making decisions, they're already not eligible for MAID in the first place.

In terms of vulnerability, I am also concerned about people being vulnerable to having their health care rights denied because of who they are, and about people being vulnerable to discriminatory policies and procedures that would deny them access to MAID under the guise of protection. Excluding in order to protect is both patronizing and discriminatory.

I'll leave my thoughts there for tonight, with thanks for—

6:45 p.m.

Liberal

The Joint Chair Liberal Marc Garneau

Thank you, Dr. Shaw.

We'll now go to Dr. Stainton. You have five minutes.

6:45 p.m.

Dr. Tim Stainton Director, Canadian Institute for Inclusion and Citizenship, University of British Columbia, As an Individual

Thank you, Mr. Chair, and members of the committee, for the opportunity to speak to you tonight.

I have reflected many times on the process surrounding Bill C-7. The failure to appeal the Truchon decision was shocking given the significance and scope of its impact.

As Bill C-7 worked its way through Parliament, some 200 disability organizations, including all of the major national bodies, were clear and united in their opposition, warning the government of the threat it posed to disabled people and other vulnerable populations. Numerous witnesses shared their concerns, often with compelling personal narratives. In addition, serious concerns were raised by three UN human rights experts. Not only were all of these concerns ignored, but the bill was massively expanded by a Senate amendment to require the inclusion of mental illness within two years—a significant expansion on the original intent of Bill C-7—without study or review.

Despite this, on March 17, 2021, Bill C-7 received royal assent after the government invoked closure to cut off debate.

It's hard to imagine a similar overwhelming dismissal if we were discussing any other equity group, were they were to voice unified concerns over a bill and were backed by UN human rights experts. Why this was the case can only be explained by recognizing a deep, pervasive and often unconscious ableism that pervades Canadian society.

Canada’s euthanasia and assisted suicide laws have always been about balancing individual autonomy to decide when to end one’s life and the protection of the vulnerable. Subsequent to the passage of Bill C-14, it would seem that protection of the vulnerable has largely been ignored in favour of an increasingly atomistic interpretation of autonomy.

It is somewhat ironic that as we come out of an unprecedented era of COVID-19 where we were all asked to make sacrifices of some of our personal autonomy in favour of broad protection for the whole of society, in the debate on euthanasia and assisted suicide we persist in privileging a view of autonomy more akin to one used by those who railed against the vaccine mandate as an infringement on their individual liberty.

John Stuart Mill, one of the fiercest defenders of individual liberty, provided an analogy for when interference with individual autonomy was permissible. He wrote that if a man is trying to cross a bridge that is unsafe, it is permissible to impede his progress as he does not wish to fall into the river, but rather his will is to cross the bridge.

This committee will be aware of the numerous reports of disabled persons who do not desire to end their lives, but feel they no longer have tenable options given the crushing demands of poverty, forced institutionalization and the lack of necessary services and supports. They are our bridge crossers. They do not wish to fall into the abyss, but without the repairs to the bridge—ending poverty, ending unwanted institutionalization and improving our disability and mental health supports—they feel they have no other option. Rather than restraining them, as Mill suggests, we are shepherding them to the edge and over through MAID.

I'm also concerned as to where this all ends, given the rapid and ill-considered expansion that will be making Canada the world leader in cases of assisted suicide and euthanasia in a mere six years. I worry that we will soon see calls for legalizing the killing of disabled people who are unable to formally consent at the request of their parents or guardians.

Sadly, we know from public reaction to things like the murder of Tracy Latimer and many other cases that so-called “mercy killing” has widespread public support.

If we continue to weaken the need for direct consent through permitting advance directives and allowing children to be euthanized, it is a very small step to involuntary euthanasia of disabled people who are considered unable to consent.

I have a son with an intellectual disability. He cannot directly tell you the value of his life, but he shows us every day in his accomplishments, his laughter, his smile, and those he touches, yet I know that most people who see him in passing assume his life is one of tragedy, suffering and dependency. These people would see an end to his life as a mercy. The Canada I want to believe we live in would value, support and celebrate his life. I increasingly fear it is becoming one that seeks only to end it.

Thank you.

6:50 p.m.

Liberal

The Joint Chair Liberal Marc Garneau

Thank you, Dr. Stainton.

We'll now go to questions.

I'll hand it over to my co-chair, Senator Martin.

6:50 p.m.

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

Thank you.

Thank you to the witnesses for your testimony this evening.

We will begin the first round with Mr. Cooper.

You have five minutes.

6:50 p.m.

Conservative

Michael Cooper Conservative St. Albert—Edmonton, AB

Thank you very much, Madam Co-Chair.

I will ask my first question of Dr. Janz.

Dr. Janz, I recall your impactful testimony at the justice committee during the study on Bill C‑7, and you are quite right, as Dr. Stainton said, that there was overwhelming, near universal if not universal opposition to Bill C‑7 from the disabilities rights community. You're right that pleas of the disabilities rights community did fall on deaf ears with the passage of that bill.

Dr. Janz, I take it that it would be your recommendation that a safeguard that death be reasonably foreseeable be reinstated in the law. That's the first point, but second, if it were not reinstated, do you have any recommendations for additional safeguards in the law to protect vulnerable persons with disabilities?

6:50 p.m.

Dr. Heidi Janz via text-to-speech software

Thank you for the question.

Yes, I do believe that ultimately our best course for making MAID a truly just practice is to reinstate the reasonably foreseeable death criterion. Failing that, I believe that we should have adequate income supports, housing and personal care services as a prerequisite before anyone can apply for MAID. These things need to be met, and that should be our criteria for eligibility for MAID. This needs to be a federally paid thing, not a provincially paid thing.

6:55 p.m.

Conservative

Michael Cooper Conservative St. Albert—Edmonton, AB

Thank you for that.

Can you provide the committee with your thoughts on how the passing of Bill C‑7 has impacted Canada's reputation as an international leader in human rights generally and, more specifically, in terms of rights for people with disabilities?

6:55 p.m.

Dr. Heidi Janz via text-to-speech software

I think the passing of Bill C‑7 did grievous and irremediable damage to Canada's reputation as an international leader in human rights generally and also in disability rights. In particular, to have not one, not two, not three, but four United Nations human rights experts officially condemn an impending law as a violation of our country's commitments as a signatory to the United Nations convention is a big deal, or at least it ought to be a big deal for a country that fancies itself a leader in human rights. Unfortunately, this wasn't the case at all when it came to the UN human rights experts' condemnation of Bill C‑7 as violating the rights of people with disabilities.

It's guaranteed by the Convention on the Rights of Persons with Disabilities, but on the contrary, the government ignored this for months, and even had the nerve to quote from the UN Convention on the Rights of Persons with Disabilities in the preamble of Bill C‑7. That, of course, takes nerve and/or a badly malfunctioning ethical compass.

6:55 p.m.

Conservative

Michael Cooper Conservative St. Albert—Edmonton, AB

How much time do I have?

6:55 p.m.

The Joint Chair Hon. Yonah Martin

I ended up adding a bit of time when you asked a question, because of the delay. We are very close to five minutes.

6:55 p.m.

Conservative

Michael Cooper Conservative St. Albert—Edmonton, AB

Dr. Stainton, do you have anything to add on that point?

6:55 p.m.

The Joint Chair Hon. Yonah Martin

Answer very briefly, Dr. Stainton.

6:55 p.m.

Director, Canadian Institute for Inclusion and Citizenship, University of British Columbia, As an Individual

Dr. Tim Stainton

To the first point, I would agree that without reasonably foreseeable criteria, there are no safeguards that will prevent the kind of things we're talking about. They just aren't there. I've written about this in several publications.

Yes, I've spoken to the UN special rapporteur. I've spoken to people in New Zealand and Australia over the last two or three months, and people are saying, “What's going on with Canada?”. That's an embarrassment for a proud Canadian.

6:55 p.m.

The Joint Chair Hon. Yonah Martin

Thank you, Dr. Stainton.

Next, we will go to Mr. Maloney. You have five minutes.

6:55 p.m.

Liberal

James Maloney Liberal Etobicoke—Lakeshore, ON

Thank you, Madam Co-Chair.

Thank you to all of our witnesses. This is a challenging and very emotional topic. I know that everybody around this table shares your concerns about trying to get this right.

Dr. Stainton, my first question is for you, sir.

I'm not familiar with any of your writings, but are you opposed to MAID in any circumstances?

7 p.m.

Director, Canadian Institute for Inclusion and Citizenship, University of British Columbia, As an Individual

Dr. Tim Stainton

No. I've been quite clear about that.

If I felt MAID could be contained, I don't have an issue with it. I believed from the beginning, and we were warned, that it couldn't be contained. I think those fears have been borne out in spades, and actually much more quickly than I feared.

7 p.m.

Liberal

James Maloney Liberal Etobicoke—Lakeshore, ON

Okay. Thank you. That's helpful.

My next question is for all three witnesses.

Given where we are.... Again, I share your concerns that MAID should not be used as a solution to your financial circumstances or other unfortunate circumstances people might find themselves in. It seems to me that what we have to do—our challenge that we're faced with at this committee, and why you're here—is come up with solutions to make sure that those things don't happen and to build in those safeguards.

What I would like to hear from you is what the safeguards are you would like to see added to any legislation to make sure these horrible circumstances like Dr. Janz described at the outset don't happen again

Dr. Stainton, why don't we start with you?

7 p.m.

Director, Canadian Institute for Inclusion and Citizenship, University of British Columbia, As an Individual

Dr. Tim Stainton

Thank you for that question.

As I said, I do not believe there are safeguards that can be put in place at this point that will address those issues without bringing back the reasonably foreseeable death criteria. We could certainly do a much better job of data collection and monitoring. We don't know how many people are in the circumstances that Heidi has described. That would be a minor step forward.

I think the issue is whether we can improve our disability support system enough. Can we take care of the issues of institutionalization? We've been saying we're doing that for 30 or 40 years now, and we're still not there. Obviously, the best-case solution is that we make those arrangements. The reality is...are we putting people's lives at risk while we're waiting for Nirvana?

There are 15,000-plus people of working age with disabilities in long-term care homes at the moment, most of whom do not want to be there. We see how long it's taking to deal with the Canada disability benefit. You seem to be able to move MAID changes along quite quickly, but it has already been a couple of years that the bill has been kicking around. We have another three years of study and we don't even know if it's going to be enough to begin to address the problem.

I don't mean to sound completely cynical, but I don't want to offer a set of safeguards that I don't think will do the job.

I'll pass it over to my colleagues now.