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.
Honourable committee members, two years ago, I was one of the Canadian disability rights advocates who testified before the parliamentary justice committee studying Bill , 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 was passed into law.
Today, I will offer evidence that Bill '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 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, 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—
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 . The failure to appeal the Truchon decision was shocking given the significance and scope of its impact.
As Bill 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 —without study or review.
Despite this, on March 17, 2021, Bill 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 , 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 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 , 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?
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?
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.
Thank you, Madam Chair.
I will address Dr. Stainton first.
I will cite an article by Maria Chang published on August 11, 2022, in which experts express concern about Canada's euthanasia laws and find the situation worrisome.
You said the Canadian legislation was likely the greatest existential threat to people with disabilities since the Nazi program in Germany during the 1930s. I imagine you were referring to Bill .
That's a little strong, in my opinion. Do you stand by that statement and did you really say it?
Okay, thank you. Since I don't have very much time, I will continue.
I take it you are appearing here as an expert and stating that the totalitarian regime, the terror regime of Nazi Germany, which sought to exterminate people, to practice eugenics, is equivalent to what we're doing as representatives of the people to try to respond to diseases, to ailments, to people with disabilities who are suffering. You're comparing that to a voluntary intention on our part.
Earlier, you also mixed up the concepts of mercy killing, euthanasia and assisted suicide. These are not the same things. Euthanasia must and can only be strictly and exclusively voluntary. You know that.
From the moment that decision becomes the person's, the patient's, how could you make a statement like that? It's a little heavy-handed.
You're asking us to consider what you're saying, and I'm willing to consider it, but what is your understanding of the government's role in this matter?
I think the government's role at the most intimate time in a person's life, their own death, is not to decide for them what is right for them. It is to be able to create the conditions for them to exercise their free will and to guarantee that they will be free to decide what they want when they die, because they are suffering irremediably and irreversibly.
There's a difference between an intolerable situation and a disability that creates irremediable and irreversible suffering.
Now that I've issued these warnings, you may go ahead.
Thank you for the opportunity to clarify.
What I said was that the comparison was with the existential threat to disabled people. I did not compare what we're doing to what the Nazis did. I compared the threat to the lives of disabled people. You're quite right that they're not comparable and I'm certainly not accusing our government of pursuing the same intentions.
What I was saying was that the outcome can have a similar effect and what we've heard from Dr. Janz and the other stories—there was another story in the paper yesterday—is that it's not as you described in all circumstances that people are being moved towards MAID. They're going to MAID out of despair, not that their suffering can be relieved with proper housing or proper supports and that's the existential threat that I'm concerned about.
Just to clarify, I was not comparing the processes or the motivations, I was comparing the outcome, if you like, and the threat level to people with disabilities and I stand by that. If someone can tell me another point in history when there has been this level of threat to the lives of people with disabilities I will happily retract that statement.
Thank you for the chance to clarify that.
Thank you very much, Madam Co-Chair.
I'd like to turn to Dr. Jessica Shaw. I really appreciate the niche expertise you're bringing to our committee with your experience in Canada's federal prisons.
I was very fortunate last summer to go on a tour of the Mountain Institution and the Kent Institution in Agassiz, British Columbia. That was certainly quite a wake-up call. I had some fantastic conversations with both the program officers and the parole officers who work so hard at their job and with such passion to try to make a difference.
Just with the conditions in Canada's federal prisons, you did talk a little bit about prisoners and their access to medical assistance in dying. From the stats that you had suggested, I'm guessing those were track one, that is, their death was foreseeable. Do you have any stats on track two, that is, prisoners who are living with disabilities? I'm just wondering if you can fill in some of the blanks on that area.
Dr. Stainton, I'd like to turn to you now. You did make mention of the struggles Parliament has had in getting a Canada disability benefit act. I certainly understand that and sympathize with it. We're still unsure as to what that federal benefit will be. There's a legislative framework for it, but we don't yet know.
I think tackling the economic insecurity that so many disabled people in Canada live with.... I mean, we know the statistics. I have a constituent who's a real activist, and he refers to it as “legislated poverty”.
I guess for me, when we come to this theme of autonomy and respecting a person's autonomy, can we ever reach a point where a disabled person has—hypothetically, let's say—all of the supports necessary and is leading a fulfilling life; you can bring yourself to a position where you're satisfied that someone is living a dignified life with a disability; and you can bring yourself to respect that they may, even with that level of support, decide that it's in their own best interest that they want to engage with medical assistance in dying?
I think this is the struggle our committee is having. How do we respect that personal autonomy, which is so important to so many people who live with disabilities?
My questions are for Dr. Shaw and are about prisoners.
I'm going to ask you several questions, and I ask that you take the time you need to answer them.
As we know, prisoners live in a closed and monitored environment. Does this affect the professional's assessment and the patient's choice? Does it affect the voluntary aspect of requesting medical assistance in dying?
How can a physician assess a patient in this monitored environment? Where does one draw the line in terms of confidentiality of medical information?
Which physicians assess detained patients and provide medical assistance in dying? In other words, are independent outside physicians used or do the correctional facility's physicians do it?
Please go ahead, Dr. Shaw.
The issue of voluntariness is an important one.
To answer your question, I've spoken with and interviewed physicians involved in each of the three known MAID cases. Certainly, the questioning by the assessors and the providers of the necessity of having guards, for example, or Correctional Services officers in the room did come up. I know that, in at least one case, a hospital ethics person was brought in to be present in the room to make sure that there was an extra level of eyes to ensure that the voluntariness was protected.
Similar to why we would keep people in prison if they can't hurt anyone anymore and they're dying, in the same vein, if someone is incapable of harming himself or someone else, probably those few moments of privacy are essential, and these have happened during assessments.
When I think about the three cases, assessments were done both within the prison system and after a transfer to community hospital. To answer your question, the process is that first the chief health services officer reviews the request for an assessment. The guidelines say that ideally a physician internal to CSC would be the first person to provide an assessment. If it has to be external, it goes external. The second, and sometimes the first and the second, is always external to Correctional Services.
Does that answer your question?
Thank you very much, Mr. Chair.
My question is first for Dr. Shaw and then Dr. Stainton.
I think that every member of this committee would agree that lack of appropriate housing and community supports should not be the determining factor to access MAID for anyone with a disability; however, not all people with a disability live in such circumstances, and their choice for MAID may be completely divorced from the need for any additional supports.
What advice would you give this committee to ensure that we have safeguards for people with disabilities who require additional supports so that they don't seek MAID as an alternative, but, at the same time, not deny those people with a disability who wish to choose MAID as an choice and who are not deciding to do so because of a lack of resources?
Perhaps this is quite a bold response, but who are any of us in this room to decide how long someone has to suffer and how much their suffering has to be before they're granted the right to access an assisted death? I worry about having additional measures imposed on to people that then affect their ability to exercise their health care rights.
I want to reiterate that I think it's clear, and everyone has said it's clear, that no one wants to see someone die because of a lack of access to social and medical supports. If that ends up being a determining factor in why they're seeking death, who am I and who are we to prevent that?
I suppose that is where I would push the envelope a little bit in our thinking, meaning that, if we don't live in a country where people are supported—and this is not specific to people with disabilities—it still comes down to who decides how long and how much suffering is enough, and I think that rests with the person.
Sure, and I thank you for the question.
As I've said, I struggle to see what safeguards there could be, beyond restoring the reasonably foreseeable death criteria. There are some things that could be done.
In the past it's been recommended that for track two there be an independent panel that reviews in detail a detailed psychosocial assessment similar to what we would do in child placement or in sentencing. It could look at all of those factors and at whether there are things like housing and alternatives. That would need to step out of the doctor-patient and into a somewhat removed panel with a broader set of expertise.
The problem, which the senator will be more than aware of, I'm sure, is that with our jurisdictional division of provincial and federal responsibilities, the MAID law can't order the provinces to meet people's disability or housing needs—not without a very long and torturous fight.
That's one thing I think could improve the situation. It's that kind of independent review, psychosocial assessment and ordering. Perhaps if those supports aren't forthcoming, then approval for MAID wouldn't be given until they are.
From a policy perspective, that's really hard to pull off.
Since I have only three minutes I would like first to thank the witnesses.
I will address my questions to Dr. Shaw.
I understand that you have done a lot of research with vulnerable people. You wrote an article called “Perceptions and Experiences of Medical Assistance in Dying Among Illicit Substance Users and People Living in Poverty”.
Can you comment on that? I think you commented in your article about the lack of knowledge about the end-of-life care options.
Also, did you find that it was a slippery slope with vulnerable people being coerced or pressured to end their lives?
Thank you for that question.
The short answer is no, we did not find that there is a slippery slope of people being pressured to end their lives.
On the contrary, the folks who I spoke with—roughly 50 people who were quite impoverished and there were some substance users as well, in Alberta and in British Columbia, primarily in Vancouver and Calgary—rather than being worried about being pressured to end their lives, were concerned about being prevented and not knowing where to go to access end-of-life care. That's what you raised about not knowing the resources.
There was a concern that, like all other aspects of their health care, they would be prevented from accessing this. It's very difficult when you're living on the street to access any health care. End-of-life care and MAID in particular was seen as an extension of that. Rather than feeling pressured, there was a fear of being prevented from accessing it.
If I can add a comment to that as well, I will never forget this one gentleman who said to me that not every overdose is unintentional. He reminded me that people have the ability to end their lives quite readily available to them.
I think the question we have to grapple with in this committee and as a society is that the state doesn't owe anyone a dignified death, but if we can provide one to someone who is suffering grievously, why would we withhold that from them?
My question, too, is for Professor Shaw.
It is my understanding that, given the Charter of Rights and Freedoms, human rights law and even common decency, to put it that way, disabled people cannot be denied or excluded from access to medical assistance in dying. I think that was the point you were trying to make.
There will be many in the disabled community and in the communities you have done specific work on who will understand that and believe that they should not be excluded from access to MAID.
How do you assess where we are on that issue of accessing this right they have to make this choice, which is what you've just been discussing a little bit with Senator Dalphond?
It's something that I've been thinking about a lot since the expansion of eligibility for MAID to people with disabilities who are not at end of life.
As someone who had most of my K-to-12 education at a school for kids with physical disabilities, I find that the latest expansion of eligibilities for a state-sanctioned death particularly chilling. Roughly half of the kids at our school had a life-limiting condition like muscular dystrophy, which at that time had a life expectancy of 14 to 18 years.
Every student in that school grew up knowing that some of us would live longer than others, but we also knew that all of us would live with the best quality of life possible until we died. This is not the message that Canadian kids with disabilities are growing up with in this “brave new world” of MAID.
For a mature minor, they are more likely going to hear that “It's only natural that you're depressed and you're tired of your life. You're disabled. Maybe you should go get MAID.”
I feel for kids with disabilities in this country. I fear for kids with disabilities in this country.
Very quickly, most of those people don't want to be in long-term care. They are there because the home care system has ceilings on what it will fund. We had the tragic case in B.C. of Sean Tagert who just wanted to stay in his home for his remaining years with his son. He needed a few more hours of home care to do that and was told that it was not possible and that he needed to go into a long-term care home, where really he couldn't have a relationship with his son, so he chose to access MAID because of that.
I'm working in Nova Scotia right now where they just had a human rights judgment against the province ordering it to get, I think, it's 400 some people in Nova Scotia alone.
All of us would think that. If you're 30 years old and all of a sudden you're told you're going to live in a long-term care facility, what kind of life is that? What kind of prospect is that? What kind of autonomy is that? You have no significant life choices.
If you look at from Jean Truchon and multiple other people, Truchon said that the cause of his suffering was that he couldn't face the prospect of life in an institution. There is no reason from a care perspective that he couldn't have been supported at home other than the funding.
This brings our first panel to a close. I would like to thank, on behalf of the committee, Dr. Janz, Dr. Shaw and Dr. Stainton. Thank you very much for your opening remarks tonight, for expressing your views and for answering all of our questions on this difficult issue with respect to MAID in the context of people with disabilities.
An extra thank you to you, Dr. Shaw, for speaking to us about inmates in correctional services in the context of MAID again. Thank you very much. It's very much appreciated by our committee, which has to deliberate on this very important matter.
With that, we will suspend briefly and prepare for the second panel.
Colleagues, we will start our second panel.
Just before we start, I will make a few administrative comments.
For all of the members as well as the witnesses, before speaking wait until I or my co-chair recognizes you by name. I remind you that all comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly for the benefit of the interpreters.
You may have questions in French or in English. Use the interpretation button on your screen if you are in virtual.
With that, I would like to welcome the second panel.
Our witnesses tonight are all appearing as individuals. We have in the room with us Liana Brittain. Virtually, we have with us Dr. Karen Ethans, associate professor, and David Shannon, a barrister and solicitor.
Thank you all for joining us this evening as we continue our study of MAID in the context of people with disabilities.
I will ask Ms. Brittain to start off. Each of the witnesses will make a five-minute opening statement and then we will get to questions.
The floor is yours, Ms. Brittain, for five minutes.
Thank you, Mr. Garneau.
Thank you for the opportunity to have our collective voice heard in this forum, where decisions are being made that directly impact our individual lives when we are at our most vulnerable. I'm here to symbolically represent an enormous group of physically disabled people who are making their end-of-life journey. We are the experts who are actually living the MAID experience.
You brought up the word “vulnerable”. After five and a half years of volunteering as an advocate in this field, I've come to understand that medical assistance in dying is so much more than just a series of injections or a self-administered cocktail provided by expertly trained staff during a medical procedure. It is in fact a very broad spectrum of services provided by our medical community at the request of the individual.
First, I want you to envision changing your perception of what a medically assisted death is. Paul, my late husband, was a psychotherapist in private practice. He maintained that if you could make a five-degree shift in your perception, you would see an issue from a very different perspective, one that you had never realized existed. So I'm now challenging you to make that five-degree shift in perspective and look at medically assisted death from a fresh new angle.
I would like to share with you some examples of ways in which the medical community helps people voluntarily end their suffering and die with dignity on their own terms every day across Canada. They are MAID, medical assistants in dying, and yet we don't call them that. Why not? These medical practices have been in use for decades, and in some cases hundreds of years in cultures throughout the world. I call it a “spectrum” of choices, because it flows from a more passive action at one end of the scale to a more hands-on, active role at the other end.
I believe it is our responsibility as a society to educate everyone, in particular those with physical disabilities like me, about what options are available to them in collaboration with the medical community as they make the final leg of their end-of-life journey. This is true people/patient-centred care, care where the individual is in charge of taking responsibility and actively participating in their own plan. I may be physically disabled, but I want to know what my choices are. I want to weigh those options and make an informed decision about what I can choose to do next, in consultation with the experts. I don't want to feel vulnerable.
There is a medically assisted spectrum of choices that a person could make if they only knew they existed.
There's cessation of treatment. There may come a point in a person's illness when they decide that further treatment is of no value to them for whatever reason. It's their decision. It's their choice. No one can decide what is too much suffering except the individual. At this juncture, the medical community and the individual agree to stop treatment, knowing that to do so will ultimately result in their death. This is a form of medically assisted death.
With a “do not resuscitate” order, one can say the same. DNR is a mutually agreed-upon contract between the medical community and the individual. In medical crisis, no treatment will be offered to sustain life, thus leading to the person's death. Once again, this is a form of medically assisted death.
There are self-injected morphine pumps. Before MAID was available, my father chose this option. He knew he was dying and had only a few hours left. He was given a morphine pump and was allowed to make his own decision.
The same goes for voluntarily stopping eating and drinking. Our medical community supports people in a variety of circumstances and eases their symptoms when they choose to stop eating and drinking, knowing that their life will end when they stop.
Palliative sedation and palliative coma are two more examples of medical assistance in dying. The MAID procedure, as we call it today, is one that most readily comes to mind when we think of medical assistance in dying. If we choose to acknowledge that there are other forms, then I suggest we rename these.
By sharing this type of information and changing people's understanding of what a medically assisted death really is, we can educate people with physical disabilities about what their options could be. When people become educated about their rights and options, they can make truly informed decisions: decisions that reflect their own needs and wants, ones that empower them and grant them their human right to die with dignity on their own terms. What an incredible gift to give a person as they transition from this life to whatever comes next.
Most importantly, please remember the three Es: envision, educate and empower. It is imperative that you provide us with the knowledge and the information we need to make our own informed choices: the ones that best meet my—our—individual needs. Empower us to die with dignity on our own terms.
As a rehabilitation specialist physician, I have 23 years of clinical and research experience with people with spinal cord injury. I follow them from acute care through rehab and transition to the community, and lifelong to manage symptoms, prevent complications and help improve quality of life.
Most people with spinal cord injury live for years—some up to normal life expectancy. My concern with MAID since Bill is the removal of the criterion that one is expected to die in the foreseeable future. People with a new, severe neurologic disability are now able to ask to end their life after only three months. I hope to convince you that three months is far too short.
I do not believe that people with new severe neurologic disability will have the ability to make an informed choice to choose death until they have had the opportunity to live with their new impairments and disabilities, reintegrate into the community and realize the excellent quality of life that is experienced by most with these disabilities.
Imagine waking up after a severe car accident, for example, and learning you have a spinal cord injury. You can't move your legs and maybe not even your arms. Many of you will think, that you wouldn't want to keep living like that. Yes, that's what many people with new spinal cord injuries think in the early months. Many of the acute care health providers that person meets early on have the same viewpoint. A lot of them have never cared for someone with a significant neurologic disability who is living a full life in the community. Many of the friends and family of that person who visit early on have the preconceived view that their loved one won't have much of a life going forward.
The person with a new spinal cord injury will spend months in hospital and in the first few years will still be adjusting to their new life. In these early months and years, suicidal thoughts and wishes to die are held by many. People can go through some very dark times. However, I can verify from my own research, other research done by colleagues and others, and my clinical experience that most people who have a chronic spinal cord injury—that is, at least a few years—rate their quality of life as very good and equivalent to or better than many people who are able-bodied.
In a research paper that I recently published with colleagues, it was found that most people with chronic spinal cord injury admitted that early after their injury, they had a wish to die. However, all of those people who we interviewed declared they no longer wished to die and would not accept MAID at that point in their life. They felt that being offered MAID too early on was wrong and that people were needing to live the life experience with spinal cord injury before they could make that kind of choice.
Literature supports that it takes years for people with new neurologic disabilities, such as stroke...and people cannot make such a decision and adjust to their new normal for at least two years.
I want to tell you a story that's reflective of many of the scenarios I've witnessed.
I was asked to see a young man in ICU on a ventilator with a high spinal cord injury. I was asked to discuss prognosis. The patient and mom were so relieved when I reported that he had a good chance of getting some significant improvement, based on my exam. The mom came to me crying and reported to me that the ICU doctor was advising them that they should turn off the ventilator—that his life would be terrible and not worth living. Guess what? That young man in ICU walked out of rehab to go home months later.
My point isn't that many of these patients get such excellent recovery, but it is rather to reinforce that we can't let our preconceived notions of what we think life with a disability would be like to cloud our judgment or care decisions, as we have not lived that life.
MAID now being part of care choices early on in the times when the person is really vulnerable, struggling to accept their new disability and before they've had the opportunity to realize what excellent quality of life their future may hold is a grave failure to these patients. It should not be part of a care choice for a long time, even up to years after their injury.
Inflammatory stories about a painful end of life have often been shared with this committee to promote ideology rather than to encourage proper analysis and cogent debate. I will not do that tonight.
I am not speaking about the far end of life. I am talking about a person such as me, a person who's lived with an upper-level spinal cord injury for over 41 years, a person who has practised in the area of disability rights and mental health law for over 25 years, a person who, early on, shortly after that accident, had dark days and for 41 years has been grateful to be able to embrace life, its wonders, its altruism and its aspirations.
That's not available, I know, to many people shortly after their accident or other catastrophic injury or disability, and there's pressure now with this new legislation directed by the state that says, “Your life may not be worth living. Extinguished is okay.”
At the outset, though, I do ask each of you to accept the stark truth that is often ignored, and that is that often suffering experienced by persons with disabilities in Canada is at the hands of the state. The suffering is caused by the state. We experience a pernicious form of human rights denial that includes poverty and unacceptable markers in the social determinants of health.
Tonight I wish to especially speak, though, to an inherent flaw, given my limited time, a flaw or contradiction in the law. Paragraph 241.2(1)(c) of the Criminal Code, which many of you know, states that a medical condition will make a person eligible for MAID because that condition is “grievous and irremediable”.
Canadian human rights legislation and the Supreme Court state that physical and mental conditions are personal effects to be protected from human rights abuses in a manner no different from race, sex, gender, religion and many other grounds of discrimination. Moreover, courts have stated that disability is a social construction; therefore, remove the social barriers and you remove the discrimination. This indicates that discrimination is fully remediable.
We ask, what is disability? Is it a physical or a mental condition that makes one eligible for medically administered death or is it a remediable social construction?
In an analysis for MAID assessment, people, when assessing for MAID, must consider more than just an extreme medical-only determination and be balanced with established human rights norms. I'm talking about human rights that find that, if you can stop the suffering through changing socio-economic condition, then, in fact, it's a remediable condition.
I would submit that nurses, nurse practitioners and physicians do not have the expertise. For people such as me, people who live in the world of independent living, you need to understand us as a community, a community that does and is able to speak to independent living and speak to the importance that the disability, the social construction, can be remediated. That will give the full weight and meaning of the word “remediation”. It will also put an important factor into the physician-patient relationship in that, if a physician, through broad and deep analysis, sees that the condition can be remediated by removing discrimination, then a person should not be eligible.
We should not just jump to provide MAID. We never jump to provide death in any other legal context. This, of course, should be given the same and even greater respect, consideration and analysis. Time does not allow me to speak much further, but I want to say and emphasize again that regulations must include a human rights analysis.
Another recommendation is that access to MAID must guard against allowing MAID to be a facilitation for suicide for individuals who are suffering a mental disorder or weakness due to anxiety, depression and vulnerability.
Also, there should be a regulated MAID oversight body that is independent and provides annual reports with full substantive analysis to the minister and the public.
Lastly, MAID should not be utilized to target a population, to target a community, especially an equity-seeking community. It would be unheard of, unthinkable, for any other group or population in Canada. It equally should be disregarded and called what it is—ableism in Canada—should it be directed in a pernicious way at persons with disabilities.
Thank you, Madam Chair.
Dr. Ethans, you spoke about informed consent in the context of persons who were diagnosed with a new, severe neurological disability. Can you speak a little bit about your research on informed consent? Second, you stated in your testimony that in such cases the 90-day wait period, reflection period, provided for in track two cases is not appropriate. However, you went on to say that, in order to come to terms with and be able to, I guess, comprehend what life looks like, that can take years.
So, if not 90 days, what is the appropriate timeline, and what would be the parameters around that?
It's a good question, and nobody has the exact answer.
The study that we did and the one that my Saskatchewan colleagues published this year are very similar studies. The questions by my Saskatchewan colleagues to the people living with disability.... As we've heard today, the experts are the people living with the disability. Those people we interviewed are the experts. I'm not the expert.
For the Saskatchewan colleagues, it was the same thing. They interviewed people with spinal cord injury and with chronic spinal cord injury. We got a variety of answers, with anywhere from a year to five years. One in the Saskatchewan group even said 10.
We know that it can be years. We don't have a definition of exactly how long it will be. The study I talked to you about, on stroke and other neurologic disabilities, found it's two years. We know that suicidality rates in spinal cord injury decrease quite dramatically by seven years.
Hearing the experts—who are the people we interviewed and the people the Saskatchewan people interviewed, and who were the people living with and who had gone through this—they all consistently said that offering MAID before people have had that chance to reintegrate into the community.... They can't make an informed decision until they've had that opportunity.
One lady I work with has a high spinal cord injury. She is amazing. She's a Ph.D. She has three children. She runs the university department she works at. She's a paralympic athlete. She said it took five years before she woke up and realized she was happy that she was alive, and she thinks her quality of life is excellent.
How do you define that? I don't know, but according to the people interviewed, it was anywhere from a year to up to 10 years.
It could be a new severe...any medical issue, really, that makes people say, “I wouldn't want to live like that.”
A lot of patients who come into it, like I said, have this preconceived notion that many of us would have if we hadn't worked with that population, which is that living with a severe disability is a life not worth living. People have to get past that. They have to be able to live that experience and be offered the chance to go to university if they need, or whatever.
We talked about a lot of the problems with not offering social resources, like housing, psychological services and everything else. However, we have to make sure that people have lived a true life experience with their new impairments and disability before being able to assess it.
Thank you, Madam Chair.
I'd like to thank all the witnesses for their testimony on this difficult issue of medical assistance in dying and safeguards.
I was fortunate, as was my colleague Michael Cooper, to have served on the first Special Joint committee on Medical Assistance in Dying in 2015‑16.
We heard from a number of witnesses at that time, and one of them made a big impression on me. It was former federal MP and minister, and also former MLA, Stephen Fletcher.
As you probably know, Mr. Fletcher was severely disabled. He was career-oriented and he had an incredible career. He told us he was not suicidal, but that the day he had enough of his irreversible condition, he would not hear of anyone lecturing him.
He had quoted an English poet:
“I am the master of my fate: I am the captain of my soul.”
if I put this in the context of the Carter decision, there's no question that the decision to go ahead with medical assistance in dying must come from the individual, not from others.
I'm setting the stage for the questions I'm going to ask the witnesses.
Mr. Shannon, I'd like to hear your opinion on the centrality of the person seeking medical assistance in dying and the safeguards.
With respect for the person's condition and their profound request, and knowing that they are of sound mind, do you feel any other safeguards should be put in place?
I'm asking you this in hopes of getting a short answer no more than one minute long, as I'd also like to ask questions of other witnesses.
Thank you very much, Madam Chair.
I'd like to thank all the witnesses for being here. I don't know if I'll be able to ask everyone questions, but I really appreciated your testimony.
I will address Dr. Ethans first.
If I were 25 years old and had a spinal cord injury, I would be reassured to have you as my doctor. For example, you say that it's up to the patient alone to decide on their quality of life. You also talk about the whole adjustment period.
Don't you think that all of this is part of what might be called good medical practices in managing spinal cord injury cases? Would you agree that a practice that would go against what you have described to us would be ethically questionable?
As a physiatrist or a physical medicine and rehabilitation specialist, there are lots of people like me who deal with spinal cord injury in a rehab centre who would have the perspective I have. However, it's the acute care health care professionals who have their preconceived notions. I believe it's because they haven't had the opportunity to look after people with chronic, severe disabilities who live in the community.
There are studies that show that if physicians are asked what people's quality of life would be like, they rate the people with disabilities' quality of life quite low. That's a general physician. When I'm talking about my colleagues, that's their job: They deal with people with disabilities. But when you ask the patients or the people with disabilities, what their quality of life is, especially with spinal cord injury, it's rated quite high.
Thank you very much, Madam Co-Chair.
Thank you to our witnesses.
Dr. Ethans, I'd like to start with you. Your opening remarks reminded me of a high school friend who once was an amazing soccer athlete. I played on the same team as him. He was involved in an unfortunate car accident and went through some pretty dark days. Nowadays, he's a remarkably successful lawyer and has his own family. That's a personal observation of mine about someone who has come through a very dark place and has adjusted to very life-altering circumstances.
Maybe I'll give you some leeway in what you'd like to say here. In our committee, yes, we do have five broad themes that we're looking at, but I also think our committee has a bit of latitude in the types of recommendations we can make.
For your field of specialty, when we're looking at supports for people who are dealing with spinal cord injuries, are there any specific recommendations you'd like to see our committee focus on for some of the supports that are necessary to help people achieve that full potential later on?
One thing that is lacking here in my program, and that I think is lacking in many places across Canada, is psychological support. You can imagine what that person you were talking about went through in his dark days. In our study we heard the same thing. The people I interviewed had very little in the way of psychological support as they went through those dark days.
I'm not just talking about in rehab or in acute care. We need to be providing psychological supports for people out in the community, and social supports. We need to be able to provide housing. We need to provide accessible housing. We need to provide accessible housing where people can be cared for, as we heard. We need more home care to keep people in the community. For some of my young patients, it's like what we just heard about with regard to personal care homes in the last session. Some of my young patients are living in personal care homes because there is not enough care support in the community for those people.
Then we need to do a better job at some pain management. Pain clinics have very long wait-lists. I mean, sometimes the pain just can't be managed well, but we need to really be managing pain aggressively.
Ms. Brittain, I'll turn to you. I appreciated the perspective you brought with your opening remarks. You really centred on a person's autonomy and their ability to make a choice that's their decision. Whether it's palliative sedation or do not resuscitate orders or declining further medical interventions, these are all, in a way, different forms of medically assisted death.
When we've been looking at the issue of protection for persons with disabilities, often we're struggling with that theme of a person's autonomy being constrained by the social conditions in which they find themselves—the dire poverty, the lack of economic supports, the lack of housing—and that theme of really focusing on a dignified life before someone can actually make a decision to get a dignified death.
I'll give you some leeway as well if you want to add anything that you want to see our committee report focus on when we table it in February of next year.
I think the most critical thing here is the individual rights and focusing on those.
I recognize that there are people in difficult circumstances. However, over the past five and a half years, many people—dozens and dozens from all across Canada, New Zealand and Australia—have approached me and shared their personal stories with me. I've written about them in the Dying with Dignity Canada blog. It all comes back to the same thing: these people are not destitute. They have homes. They have the means to live a life with all of the necessities. However, it is an individual choice.
There comes a point when your quality of life is so poor that there is no desire to continue. That is critical. It's the individual making the choice. It's what's acceptable to them. There's no point in the doctor saying, “Well, I think you have another good three or four years ahead. If you just wait a few more years, you'll feel differently”. That's not the point. The point is, I feel that way right now, and it is my right.
When my condition, to me, is irremediable, I have the right to make the choice about what's right for me.
I'd like to thank all the witnesses. My question is for Dr. Ethans.
Dr. Ethans, I'm going to repeat what Mr. Thériault said to you. This is a classic example, all the expert witnesses in the field told us that if a patient is depressed, in an acute crisis or suicidal, MAiD is not an option. That's the case with your patients in the early stages of consultation at the rehabilitation centre.
On the other hand, I would see them after rehabilitation, to help them continue to live in their environment. Many of them wanted to live. However, after several years, some may find that life is hard, that it's hard to go on for all sorts of reasons. They may find their situation intolerable at some point.
Do you consider them to be in a position to request MAiD? Do you trust the professionals treating them and assessing them to decide if they truly meet all the criteria, including intolerable suffering, and so on?
There a couple of things there.
When someone has lived in the community and they've lived their life with a spinal cord injury.... I've talked to patients and some of my patients have applied for MAID. Some of them have qualified, but have put in on the back burner. They just want to leave it there, in case.
One fellow has lived with his spinal cord injury for over 50 years. He's quadriplegic. He wants it on the back burner, in case he decides at some point that this is too much. He's definitely able to make an autonomous and well-informed decision. He's lived with this for a lot of years. He knows it better than anybody.
Now, do I trust the people...? In my province, the lead physician in charge of MAID is excellent. I trust her to make.... I've talked to her about all of this and how people in the early days, before they've realized what it's like to live with their disability, can't make that informed choice, and she agrees with me. I'm glad that I have her in this province and that I can trust her to do that.
Does that answer your question?
Thank you very much, Chair.
Thanks to the witnesses.
I have a couple of questions. The first is for Dr. Ethans, and then I have one for Ms. Brittain.
Dr. Ethans, you have highlighted the importance of highly trained MAID assessors. You just talked about someone in your province who is highly trained and understands the issues that you talked about.
I'm sure you're aware of the training program that is currently being developed and accredited by the Royal College of Physicians and the Canadian Nurses Association. Not everybody who requests MAID receives MAID, so the crux here is the assessment and the quality of the assessment.
Would you agree that if the MAID assessors are properly trained to assess an individual with a spinal cord injury, such as the person you talked about, they would be able to conduct a proper and thorough assessment of the issues?
That goes to the following. While I'm not an expert in Dutch or Belgium law, I speak to the issue of the importance of having a reciprocating relationship between a physician and a patient who might have a question about MAID.
The analysis pursuant to the assessment needs to be thoughtful. The question of remediation has to be more than just talking about spinal cord injury, which I have. Is that grievous and irremediable or it is something such as post-stroke?
It's also whether the person has an apartment that has heat in the winter. Can the person get home care? Can the person get personal support workers?
These are matters that are fundamental to the basics of life. In addition, these are questions that are critical to ask. If that means that a person just needs a small apartment with heating, then I would suggest that they should not be eligible for MAID.
The real sad story in Canada today is that people are getting MAID because they are unhappy with the circumstances of their life, not because of their medical condition. That's un-Canadian.
That brings panel two to a close.
I would like to thank our witnesses tonight, Ms. Brittain, Dr. Ethans and Mr. Shannon. Thank you. We're very grateful to you for expressing your views and, of course, for answering our questions. We're, as a committee, seeking clarification so that we can make the right decisions with respect to this extremely important issue. We very much value your testimony tonight. Thank you very much for giving us your time.
With that, we will bring this second panel to a close.
Our committee meeting is adjourned.