Evidence of meeting #6 for Justice and Human Rights in the 43rd Parliament, 2nd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was maid.
A recording is available from Parliament.
Liberal
The Chair Liberal Iqra Khalid
Thank you very much.
We are out of time.
My understanding is that there was a little bit of interpretation of Mr. Zuberi that was interrupted, but I think it was resumed. If anybody has any issues with respect to that interpretation, please do reach out to the clerk and we'll get you that text.
I'd like to take this moment now to thank all the witnesses who appeared today for their testimony. Thank you again for being here today.
We will be suspending now to move on to our second panel.
Liberal
The Chair Liberal Iqra Khalid
Thank you, Mr. Clerk.
Welcome to the witnesses. I welcome you to our second panel.
I will quickly go over the rules before we start.
You can speak in your official language. Just ensure that you have the proper interpretation language selected at the bottom of the screen. Please speak slowly and clearly, and when you're not speaking, your microphone should be on mute.
With respect to the speakers list, the clerk and I will do our best to ensure that we're maintaining that speakers list. I have a one-minute card and a 30-second card that will allow us to keep time for the questioning.
At this time, I'd like to welcome our witnesses. Appearing before us today as individuals, we have Dr. Catherine Frazee and Dr. Ewan Goligher. Appearing on behalf of the Council of Canadians with Disabilities, we have Dr. Heidi Janz and Taylor Hyatt. From Living with Dignity, we have Michel Racicot.
I understand that Ewan Goligher, who was having difficulties getting here, is now in the virtual room. Welcome.
I'm excited to have all of you. I understand that some of the witnesses have audio recordings, so we'll go ahead and start and try to provide as much as possible.
Dr. Catherine Frazee, please go ahead. You are our opening witness. You have five minutes.
Dr. Catherine Frazee Professor Emerita, School of Disability Studies, Ryerson University, As an Individual
I speak today from Mi'kma'ki, the ancestral and unceded territory of the Mi'kmaq people. I am a settler here, bound by treaties of peace and friendship and mindful that we are, all of us, treaty people.
Madam Chair, I am sorry for any discomfort that my words may trigger, but with so little time, I must speak frankly and without reserve.
Bill C-7 begs the question, why us? Why only us? Why only people whose bodies are altered or painful or in decline? Why not everyone who lives outside the margins of a decent life, everyone who resorts to an overdose, a high bridge, or a shotgun carried out into the woods? Why not everyone who decides that their quality of life is in the ditch?
Surely the answer rises up in all of our throats: That's not who we are. We dial 911, we pull you back from the ledge and yes, we restrain you in your moment of crisis—autonomy be damned. We will get to the heart of the problem that drove you out into the woods and we will beckon you back toward a life that is bearable, unless your suffering is medical or disability-related. Then, and only then, there will be a special pathway to assisted death.
Universality is the bedrock of our health care commitments. Why, then, does Bill C-7 depart so radically, dropping the threshold for MAID for one social group known to bear the trauma of suicide at catastrophic rates, but not for others who suffer and die before their time?
What is it about disability that makes this okay? Why is there such breathless confidence that Bill C-7 will bring no harm to disability communities? Honestly, I do not know, but as we marshal our evidence for the legal challenges that will follow if this bill is passed, this is what we hear in reply.
Some say that the suffering from a disabling medical condition is unlike other suffering, that it is somehow more cruel than the overwhelming pain of any healthy, non-disabled person who turns to premature death by suicide. But there is no evidence to support this.
Some say that the suffering of disability defies all hope, as it did, they claim, for Jean Truchon, but the deprivations of institutional life that choked out his will to live were not an inevitable consequence of disability. Did we learn nothing from Archie Rolland's harrowing struggle and his final cri de coeur before his assisted death? It was not the ALS that was killing him, he said.
Some say that the suffering from disabling conditions falls in the domain of medicine, but the agonizing quest of Sean Tagert teaches us otherwise. Let's not forget that he called the bureaucratic denials of needed care a “death sentence”, just days before his assisted death.
Some will fall back on the mantra of choice. They say that not everyone wants to live that way, but not everyone wants to live with the indignities of poverty either. No one wants to live under threat of racial or gendered or colonial violence. No one wants to live hungry, incarcerated, abject or alone.
Madam Chair, will our lawmakers carve out other shortcuts to assisted death for those who do live in such conditions, or will you rise to the defence of human rights? If it is the latter, I respectfully urge that you start with us, for our equality is right now on the line.
Thank you.
Liberal
The Chair Liberal Iqra Khalid
Thank you very much, Dr. Frazee, for your testimony.
We'll now go to Dr. Goligher.
Please go ahead.
Dr. Ewan Goligher Assistant Professor, Interdepartmental Division of Critical Care Medicine, University of Toronto, As an Individual
Madam Chair and honourable members of the committee, I speak to you as an academic physician-scientist, a critical care specialist who frequently provides end-of-life care, as the father of a child with physical disabilities, and as a very concerned Canadian citizen. I wish to address you specifically on the ethics of moral objection to euthanasia.
The first patient I was ever asked to examine in medical school was a young man with profound disability from primary progressive multiple sclerosis. I will call him Nathan, though that was not his real name. Nathan was paralyzed from the neck down, bed-bound, and blind. As I interviewed him, he began to speak of his experience as a person living with serious disability. He spoke especially of the deep loneliness that he felt, the isolation from the rest of the world, the absence of meaningful friendship. His pain was primarily not that of physical suffering but of deep despair of ever enjoying meaningful human contact or relational intimacy.
All these years later, I wonder if Nathan would have considered seeking a doctor’s help to commit suicide. I invite each of you to imagine that you are the one to fulfill that wish for someone like him. You place the intravenous line. You inject the sedation to put him to sleep. You inject the paralytic agent to halt his breathing. Within minutes his heart stops and he is gone. His loneliness and hopelessness are ended, and so is he.
We must all agree that this patient’s loneliness and despair are tragic. We all agree that he deserves the very highest level of care and compassion, that we must work to uphold his dignity and his quality of life. Yet with respect to the ethics of causing his death, many, like me, find a variety of important reasons to object to participating in such an act. First, we argue that euthanasia devalues the patient by treating them as a means to an end. In order to make Nathan’s suffering go away, we would make him go away. We intentionally target and end his person in order to resolve his loneliness and despair. In doing so, we are treating him—his person—as a means to an end, rather than as an end in himself. True respect for the intrinsic and incalculable worth of persons requires that they always be treated as ends in themselves. We do not destroy that which we regard as profoundly and intrinsically valuable.
Second, since respect for persons is the moral foundation of the duty to respect autonomy, by treating persons as means to ends we undermine the very basis for respecting their autonomy. If persons can intentionally be rendered non-persons, then what makes their autonomy inviolable?
Third, in participating in the patient’s act of suicide and causing his death, we are implicitly declaring that we agree that his life is not worth living. We are affirming his perception that his existence is no longer desirable, that we are supportive of his non-existence. Nathan’s loneliness and despair highlight the way that even while we may be autonomous, we are also deeply dependent on others for affirmation and value.
Bill C-7 declares that an entire class of people—those with physical disabilities—are potentially appropriate for suicide, that their lives are potentially not worth living. Indeed, were it not for their disability, we would not be willing to end them. I cannot imagine a more degrading and discriminatory message for our society to communicate to our fellow citizens living with disabilities.
Now, reasonable people may disagree over the ethics of euthanasia. Given the concerns raised here, it is understandable and eminently reasonable that many physicians and nurses object to participating in the provision of euthanasia in general, and to those with disabilities in particular. Contrary to the claims of some, objecting to euthanasia is not motivated by selfish concern for personal moral sensibilities, but rather by a profound moral concern to uphold the value of the patient and to maintain high-quality medical care.
Moreover, the Canadian experience has shown that protecting conscience presents no obstruction to patient access. Bill C-7 should be modified to clearly ensure that Canadians’ fundamental freedoms of conscience are upheld and supported in ways that Bill C-14 failed to accomplish.
Finally, I implore you to ensure that if this law is passed, it requires that the physical, social, psychological, existential and spiritual needs of patients like Nathan have been thoroughly and systematically addressed before they are considered to be eligible for euthanasia. He and others like him deserve the best opportunity for living before they conclude that their existence is pointless and should be ended.
Thank you for your consideration.
Liberal
The Chair Liberal Iqra Khalid
Thank you very much for that, Dr. Goligher.
We'll now move on to the Council of Canadians with Disabilities. They have asked for an extra amount of time. Given my discretion, I will allow them seven and a half minutes between the two witnesses who are appearing. Ms. Janz will be making her opening statement through an audio file to be played. It will be text-to-speech. She will be taking six and a half minutes.
Go ahead, Ms. Janz. Thank you very much.
Dr. Heidi Janz Chair, Ending-of-Life Ethics Committee, Council of Canadians with Disabilities
Madam Chair, it's Dr. Janz, please.
Chair, Ending-of-Life Ethics Committee, Council of Canadians with Disabilities
Justice committee, I appear before you as the chair of the Ending-of-Life Ethics Committee of the Council of Canadians with Disabilities, a national organization with a mandate to preserve and promote the human rights of people with disabilities.
I feel compelled to spend a few precious moments of my allotted time to register my concern, indeed my alarm, at the breakneck speed at which this committee is operating. This committee has been convened to study the potential impacts of expanding eligibility for medical aid in dying to include ill and disabled people who are not dying. Those in charge of this committee are very aggressively rushing the important and complex work of the committee. All of this is happening in the middle of a global pandemic, when our focus as a country has been on taking measures to protect the lives of our most vulnerable citizens. At best, this is extremely ironic; at worst, it is hypocritical, irresponsible and extremely unethical.
As someone who relies on assisted and augmentative communication, I had to request additional time beyond the two and a half minutes allotted for my testimony. This incident illustrates the reality of systemic ableism within a society designed by, and for, typically functioning people. Ableism causes the support needs of people with disabilities to be viewed as excessive and unsustainable. This has enormous and very dangerous implications for the expansion of MAID.
Disability scholar Veronica Chouinard defines ableism as “ideas, practices, institutions, and social relations that presume able-bodiedness, and by so doing, construct persons with disabilities as marginalized...and largely invisible 'others'.” Like racism and sexism, ableism classifies entire groups of people as “less than”, and perpetuates harmful stereotypes, misconceptions and generalizations about people with disabilities. Unlike racism or sexism, however, ableism remains, in the words of Canadian disability scholar Gregor Wolbring, “one of the most societally entrenched and accepted isms.”
People with disabilities are at a higher risk of suicide due to systemic and internalized ableism, yet they face substantial barriers when trying to access suicide prevention services. Medical professionals overlook typical sources of stress. Problems arising from relationship breakdowns, depression and isolation are wrongly attributed to disability. The removal of “reasonably foreseeable” natural death as a limiting eligibility criterion for the provision of MAID will result in people with disabilities seeking MAID as an ultimate capitulation to a lifetime of ableist oppression. In a truly just and progressive society, suicide prevention measures should be applied equally to all people.
More and more Canadians with disabilities find themselves in extreme financial distress as the pandemic drives up costs while already meagre provincial income supports remain stagnant. What’s more, some provinces have recently been publicly musing about reducing, or altogether scrapping, their income support programs for people with disabilities. Recent news reports indicate that some people with disabilities living in poverty are being driven to end their lives through MAID because they lack the means to survive. Physicians report that patients with disabilities are requesting MAID upon learning that the wait time for accessible housing with the supports they require is 10 years or more.
Given the demonstrated ongoing prevalence of ableism in Canada, the Council of Canadians with Disabilities is recommending the following amendments to Bill C-7 in hopes of limiting the bill’s capacity to weaponize ableism in this country.
One, the receipt of adequate housing, income support, palliative care and home-based services should be prerequisite eligibility requirement for MAID. The onus for providing these supports at the level required must fall on governments. A person with disabilities should never bear the burden of trying to lobby for adequate supports.
Two, refer to the Supreme Court of Canada, by way of constitutional reference, Bill C-14’s existing protections limiting MAID to cases where a person’s natural death is reasonably foreseeable.
Three, any changes to Canada’s MAID law must meaningfully respond to last year’s end of mission statement by the United Nations special rapporteur on the rights of persons with disabilities, wherein Ms. Catalina Devandas-Aguilar communicated her serious concerns about “significant shortcomings in the way [all levels of Canadian government] respect, protect and fulfill the rights of persons with disabilities”. Specifically, she noted that there was a lack of “protocol...to demonstrate that persons with disabilities have been provided with viable alternatives when eligible for assistive dying”, and that she had received “worrisome claims about persons with disabilities in institutions being pressured to seek medical assistance in dying, and practitioners not formally reporting cases involving persons with disabilities”.
Four, Canada's amended medical assistance in dying law should follow the judicial directive of the SCC in the Carter decision, which required a “carefully-designed system” that imposes stringent limits that are “scrupulously monitored and enforced.”
Five, remove Bill C-7's provision allowing a disabled person's health care or personal care provider to be an eligible witness to that person's request for MAID.
Six, retain Bill C-14's mandatory 10-day waiting period requirement, as it currently stands, and the requirement for independent verification of all MAID requests by two witnesses.
Seven, in response to the prevalence of medical ableism, add language to Bill C-7 that will ensure that all discussions surrounding MAID are patient-led and not prematurely initiated by the physician.
Eight, remove Bill C-7's provisions waiving Bill C-14's important and necessary final consent requirements.
Bill C-7 would enshrine a legal form of ableism into Canadian law by making medical assistance in dying a legally sanctioned substitute for the provision of community-based supports to assist people with disabilities to live. The Council of Canadians with Disabilities, along with the entire disability rights community in Canada, is therefore pleading with policy-makers to rethink and revise Bill C-7 in light of the reality of systemic ableism. You must ensure that MAID does not weaponize systemic ableism in Canada.
Thank you.
Liberal
The Chair Liberal Iqra Khalid
Thank you, Dr. Janz.
We'll now go for the remaining one minute to Taylor Hyatt.
Please go ahead.
Taylor Hyatt Member, Ending-of-Life Ethics Committee, Council of Canadians with Disabilities
Thank you.
One domain where we are particularly concerned ableism will appear is in the medical system.
I'd like to give you an example of what that looks like.
Nearly three years ago in January 2018, I became ill with a bad flu. I went to a walk-in clinic and was sent home with the usual advice: rest, Advil and chicken soup.
Contrary to what I was told to expect, my condition worsened and I began to struggle to breathe a few days later. I called the Ontario Telehealth line and was advised to go to the ER. I called a few friends, hoping to get a ride there, but no one could be with me until the next day. I took a cab to the hospital and was immediately admitted. A couple of hours later the doctor was no closer to finding out what caused my illness. When she finally came to see me, she said, “The only thing we know is that this infection affects your breathing and you may need oxygen. Is that something you want?” My answer was, “of course”. She seemed surprised and unconvinced so she asked again. My answer was unchanged.
Liberal
The Chair Liberal Iqra Khalid
Ms. Hyatt, my apologies.
I'm going to stop you here and ask for the consent of the committee, because we are over the seven and a half minutes that's allowed under my discretion.
I turn to the members of the committee to allow Ms. Hyatt to finish her testimony.
Member, Ending-of-Life Ethics Committee, Council of Canadians with Disabilities
My answer was unchanged. I said, “of course”.
In that moment, I would have been able to refuse treatment and be permitted to die. Or, in a moment of weakness, bought into the stereotype that my life wasn't worth living and requested and received a lethal injection. Breathing supports would be considered standard treatment for a non-disabled person in my situation, especially somebody in their mid-20s as I was. That's supposed to be the prime of your life. All the doctors seemed to see was a disabled woman alone, sick, tired, and probably tired of living. This is nothing new.
A study by Carol Gill of the University of Illinois at Chicago shows that doctors often perceive disabled people's quality of life to be significantly worse than disabled people's own views. Whether disabled or not, Canadians look to these professionals as guides. Doctors have power to shape the perspective of others and they should wield it with great care.
Both my age and the effects of my disability gave me an advantage. I was able to advocate for myself without support and be taken more seriously by non-disabled observers than many others would be, yet this still happened to me well before the expansion was on the table.
Here's how my story ends. I was diagnosed with pneumonia and thankfully never even needed the oxygen. I received antibiotics, came home after a week, and I'm here today.
If this bill goes through, how many more disabled people at their lowest moments could have a drastically different and decidedly unwanted ending to their story?
Thank you, everyone.
Liberal
The Chair Liberal Iqra Khalid
Thank you very much for that, Ms. Hyatt.
We'll now go into our first round of questions, starting with Madam Findlay.
You have six minutes. Please go ahead, Madam Findlay.
Conservative
Kerry-Lynne Findlay Conservative South Surrey—White Rock, BC
Thank you very much, Madam Chair.
Thank you very much to all the witnesses. It's really quite humbling to be here with you today and to hear your many stories.
My first question is for the Council of Canadians with Disabilities representatives who are here today.
Dr. Janz, you talked about how we as a government and a society are aggressively pursuing one course of action through a pandemic lockdown to save lives and on the other hand seem to be rushing through this legislation. It's a great concern to me that we are doing so in a rushed way, to expand the ability to end life instead of putting increased resources to support for living and, when it comes to it, palliative care.
The government says they've consulted widely on this bill. I'm wondering if, from the perspective of the Council of Canadians with Disabilities, you believe this consultation was extensive enough, and does it address the concerns of Canadians with disabilities?
Chair, Ending-of-Life Ethics Committee, Council of Canadians with Disabilities
Thank you for the question. I believe the consultation was moderately extensive; however, I believe that the consultation was geared towards a predetermined outcome. That is evident by the types of questions that were asked in the online survey and which seemed to be assuming that MAID would be expanded.
Conservative
Kerry-Lynne Findlay Conservative South Surrey—White Rock, BC
Thank you, Doctor.
Dr. Frazee, you have previously raised concerns about severely disabled people not being able to access the care they need.
I'm mindful that we've heard testimony that 70% of Canadians don't have access to palliative care. We've also heard testimony this morning on what was called “an inadequate patchwork of supports”. Do you feel that this bill addresses that?
Also, do you agree that MAID should only be available as a very last resort, as it is in many other countries, or, in other words, only once every other treatment option has been exercised?
Professor Emerita, School of Disability Studies, Ryerson University, As an Individual
Madam Chair, if I may speak to the question of your member, yes, absolutely, MAID should be an intervention of last resort, but only when a person's natural death is reasonably foreseeable.
Absolutely, I agree, and I think all of the evidence points to the reality that there are far, far too many Canadians with disabilities and disabling conditions who have no access not only to palliative care, but to an array of in-home supports that would permit us to continue to live autonomously, to be the captains of our own ships, as it were, and to be included and participating in the communities in which we are able to thrive.
All of these are things that disabled Canadians are being deprived of. As a result, I think we have begun to see a real trend towards seeking MAID—yes, as a choice of last resort, but a choice among two choices: either to continue to live in deprivation or to die. I think that is the essence of what members of the disability community are trying to convey here, that it's an insufficient choice to support a robust account of autonomy.
Conservative
Kerry-Lynne Findlay Conservative South Surrey—White Rock, BC
Thank you.
This question is for Mr. Racicot. As a lawyer myself and a former litigator, I have a great concern that this matter from the Quebec Superior Court was not appealed and that the mandated review simply didn't take place before the expanded bill we now have before us was drafted. Do you think it should have been appealed to the Supreme Court of Canada?
Michel Racicot Lawyer, Living With Dignity
Yes, it should. Maybe it's not over yet. As some earlier participants mentioned, there is always a possibility of referring Bill C-7 to the Supreme Court of Canada directly.
More importantly, I think Bill C-7 goes much beyond what is required to comply with the Truchon decision. It takes away with or dilutes many of the safeguards that are already—
Liberal
The Chair Liberal Iqra Khalid
Mr. Racicot, my apologies, but we're very much out of time, of which I'm very cognizant. Thank you. I hope this will come out in later testimony.
We'll now move to Mr. Kelloway for six minutes.
Go ahead, Mr. Kelloway.
Liberal
Mike Kelloway Liberal Cape Breton—Canso, NS
Thank you, Madam Chair.
I'll be sharing my time with MP Powlowski, if that's okay.