Medical Assistance in Dying Committee on Nov. 18th, 2022

[The Joint Chair, Hon. Yonah Martin]

I call this meeting to order.

Good morning, colleagues. Welcome to the meeting of the Special Joint Committee on Medical Assistance in Dying.

I'd like to begin by welcoming our witnesses, as well as those who are watching via the web, and letting you know that we are continuing our study, which is our examination of the statutory review of the provisions of the Criminal Code relating to medical assistance in dying and their application.

My name is Yonah Martin. I am the joint chair for the Senate for this committee, and I'm joined by the Honourable Marc Garneau, the House of Commons joint chair.

I have just a few items for our witnesses.

We'd like to remind members and witnesses to keep their microphones muted unless recognized by name by one of the joint chairs, and I will remind you that comments should be addressed through the joint chairs.

When speaking, please speak slowly and clearly. 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 floor or English or French.

Again, welcome to our witnesses. We do one witness, Ms. Gabrielle Peters, whose video is not on, but we should be able to hear her voice. She is assisted by an individual who will be assisting with interpretation as needed.

Welcome to Ms. Peters as well.

Our witnesses are as follows.

From the Barreau du Québec, we have Ms. Sylvie Champagne and Ms. Catherine Claveau. I understand that you will be sharing your five-minute time for the testimony.

From Disability Filibuster, we have Ms. Gabrielle Peters, co-founder, but as I said, her video may be off during her testimony. We will see how it works.

Then, from Inclusion Canada, we have Ms. Krista Carr, executive vice-president, also by video conference, at 5:45 in the morning. Thank you for getting up early to join us.

We will begin with opening remarks by Ms. Champagne and Ms. Claveau, who will share the five minutes, followed by Ms. Peters and then Ms. Carr.

Ms. Champagne and Ms. Claveau, you will each, I am assuming, have two and a half minutes for your opening remarks.

Thank you very much. You may begin.

[Catherine Claveau, President of the Quebec bar, Barreau du Québec]

Madam Chair, Mr. Chair, deputy chairs and members of the committee, my name is Catherine Claveau, and I am president of the Barreau du Québec. With me today is Ms. Sylvie Champagne, secretary of the order and director of the legal department. Thank you for inviting us to participate in the consultation on issues related to medical assistance in dying for persons with a disability.

From the beginning, which was 2010 in Quebec, the Barreau du Québec contributed actively to the discussions about the issue of medical assistance in dying. Medical assistance in dying, as well as broadening it, raised serious legal and ethical questions. That is why the following fundamental principles guided our thinking: an individual's right to self-determination and dignity; the right to access end-of-life care and medical assistance in dying throughout Quebec's territory, which is inalienable when it is time to fully realize the right to life and the right to autonomy for every individual capable of consenting to medical assistance in dying; and, finally, protection against discrimination by refusing to perpetuate stereotypes targeting groups of persons considered vulnerable, which conclude from the outset that they are unable to fully consent to medical assistance in dying.

In the Carter decision, the Supreme Court of Canada confirmed the decriminalization of medical assistance in dying and its legal framework. In its ruling, the court recognized that medical assistance in dying had to be accessible to any capable adult, in cases where the person:

(1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.

In 2016, the Criminal Code was amended to respond to this decision. Consequently, paragraph 241.2(2)a) specifically indicates that a person with a grievous and irremediable disability meets the criteria outlined in paragraph 241.2(1)c). In other words, they have “a grievous and irremediable medical condition”.

In 2019, in the Truchon decision, the Quebec Superior Court concluded that criteria regarding end-of-life and reasonably foreseeable natural death compromised the right to life and the right to the respect of the dignity of the person. We highlight that the court also concluded that this compromised the right to equality, particularly for those considered vulnerable. Indeed, they were wrongly considered as incapable of consent, because they were vulnerable due to the simple fact of their disability. Persons with a disability can be perfectly capable of exerting fundamental choices regarding their life or death, and their capacity requires individual assessment.

Furthermore, the Superior Court stated the following:

Individuals [affected by a disability] must be allowed to exercise full autonomy not only at the end of life, but also at any moment during their life, even if this means death, where the other eligibility conditions for medical assistance in dying are met.

We also invite the committee to take note of the position outlined in this decision, specifically:

[...] like any other capable and well-informed person, disabled persons may have a rational and legitimate desire to end their lives because of their condition, but also, and especially, because of the enduring and intolerable suffering they are experiencing. [...] While caution is required, it is far from obvious that a person could or would want to receive medical assistance in dying solely because of his or her disability.

We recognize that the equal right to medical assistance in dying presents very real challenges. It must be offered to everyone, taking into account the specific nature of a disability. The health care team requires adequate tools to assess consent to care and to offer the means and resources necessary for persons with a disability to make an informed decision about their situation.

That said, we think that the Carter ruling and the Truchon decision are sufficiently clear and consistent to guide the committee's deliberations around persons with a disability and medical assistance in dying.

To conclude, the lack of harmonization between the Criminal Code and the Act Respecting End-of-Life Care cannot be ignored. Since 2015, a multitude of bills and legislative amendments have been introduced. This makes it difficult, even perilous, for legal experts, patients and doctors to navigate. We have given you a document entitled “Ligne du temps de l'aide médicale à mourir”, which clearly outlines the situation.

Since 2016, the Barreau du Québec and five other professional associations have asked several times for these laws to be harmonized. To ensure the public's protection and to guide professionals administering medical assistance in dying, it is essential for these conditions to be clear, precise and, above all, consistent.

In this respect, provincial and federal constitutional jurisdictions can be exercised concurrently without relevant legislation being considered incompatible. Quebec's deliberations around medical assistance in dying are very advanced and benefit from a social and nonpartisan consensus.

We therefore invite you to support provinces' processes to broaden medical assistance in dying, such as those under review by the Government of Quebec with respect to advance requests for medical assistance in dying.

We thank you for listening, and we are ready to answer your questions.

[The Joint Chair, Hon. Yonah Martin]

Thank you. I misunderstood. You were presenting for both of you, so we will go on to the next witness.

Ms. Peters, I think we can hear you, and if you are able to turn your video on, that would also be helpful.

Go ahead. You will have the floor for five minutes.

[Gabrielle Peters, Co-Founder, Disability Filibuster]

My name is Alex Cosh . I'm acting on behalf of Gabrielle Peters as her echo today.

Good morning, I'm joining you very early in the day from the unceded territories of the Squamish, Musqueam and Tsleil-Waututh nations.

Modern western ableism, and particularly scientific ableism, serve as historical and ongoing links between colonialism and MAID. Modern western ableism forms the basis and provides the rhetorical and pseudoscientific framework for constructing hierarchies, defining other and establishing lesser, as well as delineating arbitrary lines between “deserving” and “undeserving”. Within your ableist system, track two MAID extends the coercive but seemingly arm’s-length power of the state to provide a designated class of citizens with premature death at the hands of the state.

I'm speaking to you today as the co-founder of the Disability Filibuster, a national grassroots initiative started by Catherine Frazee and myself on the eve of the passing of Bill C-7 and the creation of its second track for MAID.

Disability Filibuster was in part a response to disabled people being marginalized from the discussion and decision-making around Bill C-7 and our frustration that our collective anger was cordoned off and isolated, much like our lives.

Disability Filibuster was the only space created for the only people targeted by the expansion of MAID to voice their views. The media locked down and was dominated by the endless public relations work of those lobbying for its expansion.

Concerns about the social contagion of covering the ending of one's life were tossed aside. The line between editorializing was blurred to the point of romanticizing and lionizing those who made the choice not to continue to be a “burden on those around them” and to “end things on their own terms”. You could hear Frank Sinatra singing between the lines.

No mention was made of the previously publicly articulated and enthusiastic supports for involuntary euthanasia of disabled people during the time of Tracy Latimer's murder in reshaping the narrative to make these same people the champions of autonomy. The political sphere was dominated by the disproportionate representation of politicians enthusiastic for expanding MAID and all for being seen in a favourable light by its well-connected and well-heeled proponents. A foundation sharing the same name and lineage as the Prime Minister played more than a minor role in propelling supports to the forefront.

Disabled people are a large minority, but we are still the minority, a minority that is disproportionately poor, racialized and not noted for its strong political value and influence, as is evidenced by our policy absence in political platforms and campaigns during elections. We didn't have a chance. There was no place for disabled people in the discourse around the policy that specifically and solely affects disabled people and no one else.

Even today, the only place for us in media coverage is as human interest stories about those among us who have resigned ourselves to applying for MAID after tiring of seeking non-existent supports and unable to gulp down the prospect of a future of subsistence-level poverty inflicted and normalized as a component of our broader dehumanization and oppression. In order to be allowed a presence, you have to agree to die.

So removed, uninterested and ill-informed are our politicians and media about our lives and the discussions that we have that we've found ourselves regularly characterized as right-wing religious fanatics. This characterization is so laughably incorrect that I struggle to express the absurdity of it.

Over the course of two years, Disability Filibuster has hosted approximately 80 hours of Zooms. These included panels, readings, arts, casual conversations and live processing of our grief and exhausted rage. A great deal of knowledge was shared.

However, the truth is that I didn't come here today under the illusion that I can alter minds or inform those who have consistently, persistently and wilfully chosen to do the least possible to inform themselves about the lives of disabled people, particularly those living in poverty and on the extreme margins of society—your society.

I came to put it in on the record: Canada's expansion of MAID to disabled people whose deaths are not reasonably foreseeable reifies and builds on the existing dehumanization of disabled people in Canada, breathes new life into the goals of never-dismantled eugenics and is based on the ableism that formed this country's foundation, and as such, represents a serious threat.

The material and social conditions and absence of positive liberty facing disabled people in Canada are fundamentally different from those of non-disabled people. The very different social contract offered to disabled people has yet to provide us with a guarantee of freedom to live in the community, to not be forced into institutions should our needs exceed those deemed appropriately human, the denial of our equal right to travel, and the provision of infrastructure that would make us intended participants—not unintended participants—in society.

I didn't come here with illusions. I came here to remind you that history changes and that one day our roles will be reversed and you will be the ones answering questions.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Ms. Peters.

Next we will have testimony from Ms. Krista Carr.

[Krista Carr, Executive Vice-President, Inclusion Canada]

Thank you for the opportunity to be here today. I am coming to you today from the traditional and unceded territory of the Lkwungen, Songhees and Esquimalt peoples.

Inclusion Canada is a national grassroots organization made up of 13 provincial-territorial associations and 300 local associations representing over 40,000 individuals with intellectual disabilities and their families. For over six decades, we've advocated for children and adults with intellectual disabilities to be recognized as inherently human and of equal worth and value. Our federation has been at the forefront of trying to end institutionalization, protect lives and secure equal access to health care.

Canadians with disabilities do not yet enjoy a life of rights and opportunities equivalent to those without disabilities. This is the deeply rooted nature of ableism. Not a single national organization of persons with disabilities supported the expansion of MAID, and over 200 independent, non-affiliated organizations representing persons with disabilities actively opposed the expansion.

One organizational voice appears to have prevailed over all our voices. This one organization is not constituted of or by persons with disabilities and has never been on the front lines of advocating for needed supports, funding or systemic change to improve the lives of persons with disabilities, yet its voice prevails by claiming the dignity of persons with disabilities lies simply in their death. I can't think of a more telling example of paternalism and ableism, which together are as insidious and ugly as racism, and now as deadly.

We know a Canada where persons with intellectual disabilities were warehoused by the tens of thousands in institutions—institutions run by health care practitioners who segregated, isolated, maltreated, forcibly sterilized and anonymously buried persons with intellectual disabilities. We know a Canada where Canadians with disabilities were denied equal access to life-saving transplants, where infants with treatable conditions went untreated and were allowed to die from preventable conditions and where others had or have DNR orders imposed on them without their or their families' consent. We know a Canada where, if a parent murders their child with a disability, they are characterized as a “mercy killer”, and where, during COVID, people with disabilities were threatened by triage protocols.

This is the context in which we see MAID. It is impossible for the lives of persons with disabilities to be safeguarded by a system reliant on the subjective opinion of health care practitioners as if they live, work and think outside our culture of endemic ableism.

As Canadians, we acknowledge the vastly higher rates of suicide among indigenous youth and adults to be a tragic consequence of historical and societal devaluation, one that is crying out to be remedied. No one suggests that so many indigenous people kill or attempt to kill themselves as a function of being indigenous, but rather because of factors outside of themselves that lead to their suicide. Instead, we recognize this crisis as a tragedy at the personal, family, community and national levels to be prevented through action that remedies the socio-historical and current factors that lead to far too many indigenous people committing or attempting to commit suicide.

In this case, an individual's choice to end their life does not outweigh the necessity to maintain this group and others' protection under the Charter of Rights and Freedoms by prohibiting assisted suicide on the basis of being indigenous or of race or gender or any other specific population. Only persons with disabilities, as an identifiable group, are now less protected under our charter.

Imagine a line of people seeking to end their lives and being sorted into two: those whose suicides need to be prevented and those with a disability who are simply offered death. Let's be honest: It's not their perceived suffering that separates one from the other, but judgment as to the worth of one life in contrast to another, given one's disability.

Persons with disability struggle to be perceived as equally valued, escape poverty, obtain essential supports, find an affordable and accessible place to live, secure employment and obtain equal medical care. Then, when overwhelmed by all these challenges, the answer we give them is “death”. This is the manifestation of cruelty in a law now being considered for extension to those with a mental illness, and to mature minors and others, all inclusive of children and adults with disabilities.

In closing, we do not support the expansion of MAID and call upon Parliament to reinstate the legislation that restricted it to those near the end of their lives, legislation that does not discriminate on the basis of disability by only permitting MAID for those near the end of life equally. In this context, disability is not a prejudicial factor. It is increasingly urgent that we return Canadians with disability to their inherent and full rights by restricting MAID to Canadians near the end of their life.

Thank you.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much to each of you.

I should also thank Ms. Peters for getting up so early. You are also on the west coast. Thank you very much for your testimony.

We'll now move into our first round of questions. We have Mr. Cooper for five minutes.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Thank you very much, Madam Chair, and thank you to the witnesses.

I'll direct my questions to Ms. Peters.

Ms. Peters, you said that modern ableism and scientific ableism are the basis of our current track two MAID regime. Can you elaborate on this point?

[Gabrielle Peters]

Scientific racism was the rationale for white colonialism. Scientific and medical ableism is similarly used to support MAID for people with disabilities. For example, scientific ableism made it that not long ago, homosexuality was considered a disability. Presumably, we would now be discussing the possibility of MAID for people because they are gay if that hadn't changed.

Today more than 80% of U.S. physicians reported that people with significant disabilities have a worse quality of life. This false assumption is believed to contribute to the health disparity experienced by disabled people.

Medical ableism provides MAID with a false facade of legitimacy and rigour that our suffering can't be mitigated and that we are better off dead.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Thank you for that.

Can you elaborate on the point you made about the absence of positive liberty for persons with disabilities and the impact in terms of personal autonomy?

[Gabrielle Peters]

Lobbyists for euthanasia/assisted suicide/MAID reference concepts like freedom, autonomy and dignity. With MAID, the state provides the funding and infrastructure for it to take place, a positive freedom. They argue that people have the freedom to make this choice, but imagine a country having elections but setting up only one polling station in the entire country and opening it for only one hour on one day. There may be no laws barring anyone from voting, but there are also no laws making it possible.

It is necessary for the conditions to exist that make living as a disabled person genuinely possible and desirable. A choice between forced institutionalization, poverty and MAID is not a free choice.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Could you maybe speak to the fact that when we look at MAID, we see a great focus on individual suffering with respect to setting up the regime that affects not only individuals who are suffering but society as a whole?

[Gabrielle Peters]

One of the hardest thing about this so-called “debate” has been the way those of us who oppose MAID have someone who has received MAID pitted against us in some sort of suffering competition. Are disabled people an oppressed group? Yes. If so, is it possible to safely designate another group to be given the legal rights to cause their death? Do the conditions for choice to occur exist? Are those even possible?

You need to understand that we are nowhere near being in the position as a society to make death by state safe for disabled people at a policy level.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Ms. Carr, can you elaborate upon the lived experience of Canadians who live with disabilities since the passage of Bill C-7, specifically the removal of what I believe is the most important safeguard, namely that death be reasonably foreseeable?

[Krista Carr]

We have been inundated with calls to our offices across the country. People are desperate, and there are a number of reasons behind that.

People always say, “Well, give us examples.” We have documented cases, with people's names, people's faces and people's stories, and they're just piling higher and higher and higher. These are all people with disabilities who want to live and who have been trying to live a dignified life in this country and have not been able to do that. There is no right to disability supports and services. There is no right to anti-ableism in the health care system. There is no right to palliative care, yet we have a right to, quote-unquote, “end their suffering” by causing their death, when really what they want to do is live, but they want to be able to live on an equal basis with others.

We've given this special right to only one group of charter-protected people in our country, and that is people with disabilities. That is not a right that's available across the spectrum for anybody else. For everybody else, we want to do suicide prevention and we want to support them and we want to try to get them what they need and make sure they know they're valuable to our society.

Let's not fool ourselves by pretending that we're giving people autonomy here. There can be no autonomy when you do not have access to supports and services; you're homeless; you're living in poverty; you're inadequately housed; you're isolated; you're marginalized; and you can't even get your basic needs met. That is not giving people autonomous choices.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much.

We'll now move on to Mrs. Brière, who has five minutes.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

Thank you, Madam Joint Chair.

Welcome to all the witnesses.

My questions will be for Ms. Claveau.

First of all, thank you for your comments.

In your opening statement, you talked about the importance of the right to self-determination and the right to equality. You said that one must not conclude from the outset that a person with a disability is unable to consent to medical assistance in dying.

Do you think that legislation should include additional measures in these cases?

[Catherine Claveau]

Thank you for your question.

I will give my colleague, Ms. Sylvie Champagne, the opportunity to answer you.

[Sylvie Champagne, Secretary of the Order and Director of the Legal Department, Barreau du Québec]

Good morning.

Indeed, we believe that the safeguards outlined in the Criminal Code and the Quebec Act Respecting End-of-Life Care, as Ms. Carr said, can ensure that all citizens, including those with a disability, can make a choice based on free and informed consent.

In our view, it is not necessary to add new safeguards.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

Have you personally met with different groups or organizations of people with a disability to outline your point of view and see if they share it?

[Sylvie Champagne]

We closely followed the debates about medical assistance in dying from the beginning. As the president of the bar said, we are aware of real challenges on the ground, that is to say issues surrounding care and the difficulties that people with a disability may have with social services.

Obviously, we believe that governments must be sure to offer a full suite of services and care to people with a disability. While doing so, obviously, we need to strike a balance. We think that discrimination should be avoided when it comes to a right offered to all citizens.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

If a person is declared incapable when certifying a mandate or starting a protection regime, whether it be a trusteeship, now called a guardianship, we ask for a psychosocial report and a medical report. We rely on a social worker's and a doctor's expertise.

In your opening statement, Ms. Claveau, you also spoke of the importance of giving the care team the right tools.

Currently, do you think that training is sufficient?

Do you consider that our doctors are able to accurately assess whether a request is made in a rational and informed way?

[Sylvie Champagne]

The Barreau du Québec works with all five professional associations involved in medical assistance in dying.

Today, representatives from the Collège des médecins du Québec will appear before you, and you will be able to ask them that question. I can, however, tell you that in Quebec, training is offered to all professionals involved in cases of medical assistance in dying. I can't say how other provinces in Canada do it, but I know that in Quebec, there is training.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

During previous testimony, we heard that we could include the consent of a parent, loved one or caregiver.

Is that something that might be included in the medical assistance in dying process?

[The Joint Co-Chair, Hon. Yonah Martin]

Answer very briefly. There are about 30 seconds.