THE STANDING SENATE COMMITTEE ON LEGAL AND CONSTITUTIONAL AFFAIRS
EVIDENCE
OTTAWA, Wednesday, February 3, 2021
The Standing Senate Committee on Legal and Constitutional Affairs met with videoconference this day at 10 a.m. [ET] to discuss Bill C-7, An Act to amend the Criminal Code (medical assistance in dying).
Senator Mobina S. B. Jaffer (Chair) in the chair.
[English]
The Chair: Good morning, senators. We’re ready to welcome our first of two panels today.
I’m Mobina Jaffer, a senator from British Columbia, and I’m honoured to be the chair of this committee. Today, we are conducting a hybrid meeting of the Standing Senate Committee on Legal and Constitutional Affairs.
Senators, you have heard me say this many times, but apparently I have to say it again: If any challenges arise, particularly in relation to interpretation, please signal that to the chair or to the clerk. If there are any other technical issues, please contact the clerk.
I will do my best to get to everyone who wants to be heard, but please, I ask you to avoid long preambles and not to ask long questions. Please stick to the time allotted, which is five minutes. Senators, I know that most members want to ask questions, so do not let the clerk know that you have a question. I will call on you, but if there is a non-member who has a question, please let the clerk know.
[Translation]
I’d like to take a few minutes to introduce you to the committee members who are participating in today’s meeting: Senator Batters, deputy chair, Senator Boisvenu, Senator Boniface, Senator Boyer, Senator Carignan, Senator Cotter, Senator Dupuis, Senator Griffin, Senator Harder, Senator Keating, Senator Tannas, Senator Gold, ex officio, and Senator Martin, ex officio.
[English]
We also have many senators joining us today who are not committee members: Senator Petitclerc, who is the sponsor of the bill; Senator Kutcher; Senator Moodie; Senator Seidman; Senator Pate; Senator McCallum; Senator Miville-Dechêne; Senator Woo; and Senator LaBoucane-Benson.
For our first panel, I am happy to welcome our dear colleague Senator Mégie. I will call on you in a minute, Senator Mégie, but it is a real honour to have you here as well.
Senators, I want to give you a briefing about what is going to happen today. We will have two panels, then we will go through the bill clause by clause. As I asked earlier, if you have any observations, please send them to the clerk in both languages.
For the first panel today, we will hear from our colleague Senator Mégie. We know she has a lot of experience in palliative care. Senator Mégie, again, we look forward to hearing from you about palliative care.
[Translation]
Honourable Marie-Françoise Mégie:
Thank you, Madam Chair. It is a pleasure to appear before the Legal and Constitutional Affairs Committee today on an issue that is close to my heart and has been a part of my professional life for more than 30 years. I practised palliative care in the context of medical care at home and in a palliative care home in Laval, Quebec. These homes are called “hospices” in the English-speaking community.
Medical assistance in dying (MAID) appeared at the end of my professional practice. I sat on the committee to implement MAID as a representative of the Laval palliative care home. The purpose of my testimony is to provide an update on the care provided in palliative care homes.
First, I will define palliative care. Palliative care is comprehensive and active care provided by an interdisciplinary team. This care is intended for people suffering from serious and incurable illnesses. The primary goal is to relieve pain and other symptoms without missing or delaying death while maintaining the best possible quality of life. Hospice palliative care is essential care that is part of a continuum of care through to end-of-life care. It ends with a person’s natural death. Given Canada’s changing demographics, the need for hospice palliative care will continue to increase over the years. Despite this, it remains little-known to the general public, and that is probably one of the greatest barriers to access. It is very common for patients receiving palliative care to tell us that if they had known what palliative care can offer in a setting such as a hospice, they would have accepted it long ago. Palliative care is administered and delivered in homes, hospitals, long-term care facilities and hospices.
Normally, upon admission to a hospice, the patient expresses the need to live comfortably in his or her final days. The general atmosphere in these homes is calm and serene. During their stay, patients benefit from continuous comfort with treatments appropriate to their state of health, and are surrounded by professionals trained in this field. Psychosocial and spiritual support services, according to beliefs and culture, are also available to all. Volunteer support is the keystone of palliative care accompaniment. It provides human relationships filled with compassion. Usually, the stay ends smoothly, in the company of caregivers and loved ones.
In Canada, since 2015, not all roads end this way. Another end-of-life option is available: medical assistance in dying. It is a medical act that aims to put an end to the uncontrollable physical and psychological suffering of a person who requests it. I will spare you all the eligibility criteria that you find in Bill C-7, to emphasize once again that this act is performed following a free and informed request made by the person concerned. People very rarely apply for admission to a hospice while waiting for MAID. However, the Minister of Health recently noted in a letter that a majority of people who have received MAID would have benefited from palliative care services. MAID is usually administered in hospital. It can even be received at home, in a CHSLD, and in some palliative care homes.
Canadians need to have these two options available to them at the end of life: palliative care, and physician assistance in dying. People will be able to make their choice. One should not exclude the other, and the choice of one should not be made in the absence of the other. It is important that continuing education in end-of-life care be available to all health care professionals to maintain high quality standards of palliative care and to ensure that it is accessible. We need to develop and promote research in this growing field of practice.
For medical assistance in dying, professionals have a protocol to follow, written by health authorities. The Canadian Association of MAID Assessors and Providers is in the process of establishing standards of practice in collaboration with other national associations. Some colleagues are proposing the creation of an oversight committee composed of palliative care practitioners and representatives of vulnerable persons to ensure that quality standards for this practice are maintained.
I would like to take advantage of my presence as a witness in this study of Bill C-7 to present to the committee a brief written by physician senators, which has been revised by colleagues from different provinces, to provide clarification on the use of midazolam in medical care.
During his speech on Bill C-7, our honourable colleague Senator MacDonald asked questions about the use of this drug for MAID and among those on death row in the United States. This is the reason for the submission of this brief.
I am now ready to answer all your questions.
[English]
The Chair: Thank you very much, Senator Mégie. We will go on to the next witness, Dr. Joshua Wales. Dr. Wales is a palliative care physician and MAID provider at Mount Sinai Hospital in Toronto.
Dr. Joshua Wales, Palliative Care Physician, Sinai Health: Thank you to the members of the committee for the opportunity to discuss Bill C-7 with you today. Since 2014, I have been practising home palliative care at the Temmy Latner Centre for Palliative Care affiliated with Mount Sinai Hospital. I have an academic appointment in the Department of Family and Community Medicine at the University of Toronto. I’m also a settler, mindful of living and working on the traditional land of the Huron-Wendat, the Seneca, and most recently, the Mississaugas of the Credit First Nation.
I’ll begin today by addressing the integration of MAID into our palliative care practice. As one of the largest providers of home palliative care in the country, our centre provides 24/7 physician support to patients and their families in a large and diverse urban centre. Along with several colleagues, I have been providing MAID in this context since 2016.
At our centre, between 4% to 6% of our home deaths are MAID deaths. This strongly suggests that a desire for MAID can persist even in the presence of comprehensive palliative care.
While we must continue to address the significant and extremely troubling gaps in access to palliative care across Canada, our experience adds to the data suggesting that palliative care is not a panacea and that a lack of access to palliative care, while unacceptable, is not driving MAID requests.
Turning to Bill C-7, there are many aspects of this legislation that my colleagues and I see as positive steps in improving the quality and accessibility of MAID. First, I support the proposed waiver of final consent. As a physician, I have found it incredibly difficult to advise patients that, should they truly desire MAID, they should consider setting a date sooner than they otherwise would for fear of missing their window of eligibility with respect to capacity. This waiver of final consent will also help mitigate the significant distress and anxiety that arises when patients find themselves at risk of losing capacity prior to a scheduled MAID procedure. I know this waiver will be a great relief to both patients and clinicians.
Second, I strongly agree that reducing the number of independent witnesses for the patient’s written request from two to one and allowing that witness to be a health care or personal care provider removes a barrier to access that many individuals experience, especially those who are more socially isolated. This change will result in more equitable access to MAID.
Third, I support the proposed elimination of the 10-day reflection period for those whose deaths are reasonably foreseeable. While I understand its original intention, in most cases, the reflection period has become a meaningless logistical barrier in an already fraught process, and its elimination will decrease the duration of suffering of those who are eligible for MAID and desire it as soon as possible. While some fear this will lead to MAID without adequate reflection, in my experience, MAID deaths are never impulsive. Indeed, the written request is more often the culmination of a long period of reflection on the quality and meaning of life in the context of an individual’s current and evolving clinical course.
During our assessments, we ask patients when they first started considering MAID, and invariably, the answer is weeks, months or even years. Furthermore, our MAID assessments screen for impulsivity by ensuring that these decisions are well considered and premised on an accurate understanding of their condition, its trajectory and all the available treatments for their suffering. While a desire for MAID certainly can fluctuate, for the person requesting MAID at the earliest possible date, it would be exceedingly rare for that request to be withdrawn after 10 days of mandated reflection.
Fourth, while virtually all of the patients in our palliative care practice have deaths that would be considered reasonably foreseeable, I support the broadening of eligibility to those whose deaths are not reasonably foreseeable. I have seen first-hand the devastating effects of declining to provide MAID for a competent individual with intolerable suffering.
That said, with the ongoing reliance on the idea of reasonably foreseeable natural death, I hope the government will provide updated guidance in the interpretation of this term. From the beginning, reasonably foreseeable natural death has been clinically vague, poorly understood and inconsistently interpreted. Even as an experienced MAID provider, I sometimes struggle with this concept. I know that I and many other assessors and providers would greatly appreciate additional insight into what conditions need to be satisfied in order for a death to be considered reasonably foreseeable. This guidance would ideally take into account the legal decisions, clinical practice guidelines and expert opinions that have emerged since 2016. With an absence of clarity, we may continue to see inappropriately narrow interpretations of this criterion.
Finally, while I have limited clinical experience with patients whose mental illness is their sole underlying condition, after reviewing the evidence presented by legal and psychiatric colleagues, I’m confident that informed, experienced clinicians can safely and conscientiously provide MAID to certain individuals with mental disorders, as long as it’s accompanied by the development of appropriate safeguards and processes.
In conclusion, whatever form the final bill takes, I can assure this committee that the many MAID assessors and providers I am acquainted with are a thoughtful, cautious and empathetic group of professionals who adhere diligently to the laws and policies governing MAID — which is a peaceful procedure — and we will continue to do so in the spirit of providing high-quality, compassionate care to our patients.
Thank you very much. I invite your questions.
The Chair: Thank you very much, Dr. Wales. We will now go on to Gabrielle Peters, who is co-founder of Dignity Denied. Ms. Peters brings a deep understanding and analysis of intersections between poverty, ableism and MAID. She is being assisted today by Spring Hawes, also of Dignity Denied. Ms. Peters, please proceed.
Spring Hawes, Peer Mentor and recent MLA candidate, Dignity Denied, as an individual: Thank you and good morning, senators. I’m here to speak on behalf of Gabrielle Peters and will read her statement. I am here this morning on the unceded territory of the Syilx Nation in the Okanagan area of British Columbia.
On behalf of Gabrielle:
I’m here today to testify about my knowledge and to share my experiences and maybe answer your questions, if you deem me worthy of any. But I hope that you will forgive me if I also pose some questions of my own.
Having watched the Parliament and Senate proceedings on Bill C-7 and having lived in this country as a disabled, poor woman, particularly during this pandemic, I already know how little value is placed on my knowledge or my experiences or even my life. I don’t arrive here expecting to say I suffer and have the Canadian state turn and ask, “How can we help?” because that is not my lived experience. I did plan to come armed with statistics and analysis, a theoretical framework, some Canadian history and hopefully some humble reasoning skills. I thought I might have time to discuss the conflating of liberty with autonomy and the lethal consequence of policy that denies interdependence and flattens the “us” that is Canadian society to White, wealthy and non-disabled.
I would have liked to discuss why a lethal injection of chemicals by a doctor has been branded dignified. Perhaps I would have asked whether you had given any thought to the manipulative, coercive effect of the branding.
Decades of dire warnings about how old and disabled people are going to burden our health care and society has been matched by marketing MAID as a heroic, brave, self-sacrificing and honourable death. You would be shocked at the number of times I have been called selfish by health care professionals for wanting health care.
What is it about this particular demand that makes the Canadian state bend to fully fund and deliver their wishes, regardless of the harmful impacts it will have on a protected class? Is it the prospect of cost savings? Because I know the government commissioned a study and found there would be some, but it only considered MAID versus end-of-life care. Imagine the cost savings of causing the early death of a disabled person who is not dying and has decades of health care, and possibly income and other supports, ahead of them.
If it’s not the cost savings, then we are left with ableism versus the Canadian myth of rugged individualism — the rugged individualism that is supported by a piece of plastic.
The phrase “on their own terms” is slightly foreign to me as a disabled poor person. I can’t even cross the street at 8,000 of the 27,000 corners in Canada’s third-largest city because they have not been ramped. I live in a unit that was assigned to me. On the day I moved in, the movers had to wait while the police, then the coroner, and then an ambulance used the elevator, because this is how people here move out.
My wheelchair seat cushion has a tiny tear in it. I know this because I deal with incontinence, and when I wiped the cover, I discovered the foam was weighty with the fluid it had absorbed. If I had money, I would go online or pick up the phone, and a new cushion would be on its way and I would go on with my day. The problem would be handled by me — or, actually, by my money. “Efficient problem-solver” could be my brand or at least a line in my resumé’s cover letter. But I am poor, so a new cushion means applying for funding, and to do that, I first need to book an appointment with an occupational therapist who will be paid to say what is already obvious: that I need a new cushion — or at least I hope she will.
After that, a chain of events — if it goes smoothly, and it never does — includes documents exchanged between the OT, the ministry and the government vendor, until a new seat cushion can be finally ordered to me. This can be weeks, or even months, of sitting with the smell of stale urine.
We do not need to build a laboratory to discover how to end the suffering of poverty. We know how to end poverty; we just don’t do it. Why have press releases about reconciliation and racism beside press releases about a Bill C-7 that seems to violate the spirit of one and perpetuate the injustice and harm of the other? Were the words spoken here by the Indigenous leaders, by Black disabled people and by disabled people of colour — few though there were — not sufficient? If they were, why is a single MAID provider’s testimony that she is 100% confident about the abilities of 100% of her peers in 100% of the situations to be able to operate 100% free of bias and with 100% accurate assessment treated as credible evidence?
In 2009, before MAID became law, I was admitted to a hospital in Vancouver. Several years earlier, a rare autoimmune disease had set in. Prior to that, I worked, and prior to that I was a university student who also worked. I’d worked my way up from poverty and was on a path to secure middle class, and then I got sick. A day or so into this admission, I found out my partner was leaving me because he didn’t want a future with a disabled woman. Because I was no longer working, and because his income was too high to allow me to receive my own support from the government, when my bank account emptied, I became his dependant. Now he was leaving, and I was homeless.
It was at this very moment that the hospital sent someone in to console me. They’d heard the news, and they were very sorry. She passed me a tissue and said I had been through so much and I deserved a rest. Then she produced a DNR. When I refused, we went back and forth until the charade of concern was dropped, and she shouted, “I don’t even understand why you would want to go on living.”
I know that MP Garrison has suggested that weight not be put on these words because I didn’t report them to a self-governing body. The thing is, I tried, and no one would return my call. I didn’t have a computer or visitors and I was bedridden.
You think you have all the answers and you can tie this bill up in a bow, but the truth is you know nothing of the lives of the people who you are putting in the crosshairs by deluding yourselves that you can amend away the danger. Kill Bill C-7 or you will kill disabled people.
Thank you.
The Chair: Thank you very much Ms. Peters, and thank you Ms. Hawes, for your very compelling message.
We will go on to hear from Sylvain Le May, Citizen, Welcoming and Support Services for Students with Disabilities, Université du Québec à Montréal.
[Translation]
Sylvain Le May, Citizen, Welcoming and Support Services for Students with Disabilities, Université du Québec à Montréal, as an individual: Honourable senators, participants, thank you for the opportunity to speak today as part of the committee’s study of Bill C-7 on Physician Assisted Dying. I am a member of the Quebec Human Rights and Youth Rights Commission, and a member of the Bureau de l’inclusion et de la réussite étudiante, the office of inclusion and student success, at the University of Quebec at Montreal. However, I am participating in this consultation on my own behalf and as a person with a disability. I will try to illustrate, through my life story, a more personal point of view on the delicate issue of medical assistance in dying.
As I am aware of the challenge that this study represents, it seems appropriate to me to recall that it is not the current context that we have to evaluate, but a bill. While it may reveal the flaws in our system and the weaknesses in our social fabric, this context should not colour the analysis of this bill, because this is not the issue at hand.
I want greater access to medical help in dying, because this is a decision that belongs to each individual. The question raised by many participants, groups and associations is the context in which the decision to use MAID is made. This question needs to be asked, but it needs to be asked in a broader context than that of this bill. While I recognize the legitimacy of the requests made by these associations and organizations, I feel, as a disabled person, a certain discomfort when they speak on my behalf, when I have not authorized them to do so and when they have not consulted me. Moreover, to oppose two rights, that is, the right to live with dignity and the right to die with dignity, is to privilege one right at the expense of the other. However, all rights are equal.
Disability, by definition, reflects back to us the image of our own weaknesses and our own fears. Being a disabled person does not confer courage, but one has a will to live despite the fact that one is disabled. The notion of “disabled person” is multiple, diverse and rich in forms and colours which, like a quilt, make up a set of patterns. There is no single story of a disabled person. There are as many stories as there are people with disabilities and life trajectories conditioned and influenced by cultural and environmental factors.
I am a disabled person with spinal muscular atrophy. For 50 years, I have been living and growing with this challenge of mine. Like you, I have rainy days and sunny days. Day after day, I use the strengths I have and I try to become a better person and to contribute, through my actions, to a more just and equitable society.
When I was 8, the doctor insisted that I leave his office when he was about to tell my mother about my illness. From that day on, I have been afraid that decisions would be made for me about what is good or bad, or what I would be able or unable to do. Fortunately, despite this news which was painful for my parents, they never raised me as a person with a disability, but simply as a child whose dreams could sometimes be too big for him. The day will come when my abilities will leave me for good. What will I have left when the dreams longer buttress my daily joys or my need to escape? I will still have my freedom of choice, conscience and personal definition of life as I understand it.
I did not choose to be born with a disability; I chose to live and cope with it. Since I did not choose to be born with a disability, it seems pernicious to me to think that the choice of whether or not to continue my life would belong to others, rather than to me.
With the legalization of medical assistance in dying, we have accepted, as a society, that we may not wish to continue living at all costs. For some of us, it is a matter of making an informed decision that flows from our understanding of life. The choice to end one’s life is a matter of personal morality and is part of the freedom of conscience guaranteed by the charters, as the Supreme Court has emphasized. Freedom of conscience and religion should be interpreted broadly and extend to beliefs dictated by conscience, whether based on religion or secular morality.
I could tell you about Robert, who is always there for me in my daily challenges as a person with a disability. Life has dealt him a diagnosis of amyotrophic lateral sclerosis, with two to five years to live trapped in his body. I didn’t hesitate for a second when he asked me if I would agree to help him die. With full knowledge of the legal consequences I was facing, I accepted his request when it was time to support him in his desire to take medication that would end his life. Reassured by my support, he was able to continue his fight and end his days before he was taken away by the disease.
I could also tell you about this doctor who has a progressive disease similar to mine. In order to ensure that his wife was not affected by the legal issues related to his decision to end his life, he chose, as the doctor he was, the right dosage, and waited until his wife left to kill himself.
She still remembers his last words: “Take your time coming home.”
I am Gladu, I’m Truchon, I’m Sue Rodriguez. I am that woman, Manon, who had to go to Switzerland to end her life. No one, from coast to coast to coast, should have to leave this world without being surrounded by their family and the people who love them because of legal considerations. Nor should anyone have to hasten their death for fear of not being able to ask for help once they have lost their faculties.
From this perspective, Canada should not approach this issue by taking a criminal approach, but rather, as Quebec has done, by taking an end-of-life care approach.
People living with disabilities who experience intolerable suffering will not be better served by criminalizing the assistance that health care professionals may provide in ending their lives. Prohibiting such assistance deprives these people of the possibility that their wish to die will be taken seriously. Different options need to be discussed and considered, including medical assistance in dying.
End-of-life care, including physician assistance in dying, is part of a continuum of care. In 2008, the Quebec College of Physicians proposed that we reflect on euthanasia from a care perspective. In the clinic, the physician may suggest this and the patient obviously remains the one who decides, since it is his or her life that is at stake. For subjective and objective reasons, he accepts, refuses or demands something other than the proposed care.
From this perspective, it is unlikely that physicians will become mere executors and that care will be provided on demand.
For those who fear that these choices will become a gateway to the elimination of persons with disabilities, I would like to remind you that protective measures and mechanisms already exist and that they are numerous in every province. Professional bodies, colleges of physicians, associations of persons with disabilities, rights organizations, the Charter of Rights and Freedoms, there is a list of ways to avoid any drift currently feared by certain disability association lobbies.
While additional measures could be adopted to ensure quality care, to better support people with disabilities and combat bias and stereotypes, this should not be at the expense of respecting all the rights of people with disabilities, including the right to decide on their end of life when suffering has become intolerable.
In closing, honourable senators, you must try to imagine yourself in the shoes of the people directly affected by the bill you are charged with studying. In my contribution, I wanted to help you do so by presenting you with another perspective, that of a person for whom this issue resonates close to home. Encouraging meetings between the treatment team, the close and extended family and the caregivers is the only way to understand the other person and avoid explaining his or her choices through the lens of our own references.
There’s a saying:
A bird sitting on a tree is never afraid that the branch will break, because its confidence is not in the branch, but in its own wings.
When the time comes, let people with disabilities have the freedom to choose what suits them, because it is their life. Thank you for listening and for taking into account what I have to say.
[English]
The Chair: Mr. Le May, thank you very much for sharing with us your reality. I can assure you that this is not lost on us. We will have both Ms. Peters’ and your testimony today in mind. Thank you very much.
We will now go on to the next witness, Andrew Roman. He is a litigation lawyer. Mr. Roman has over 40 years of experience in human rights, constitutional, environmental and energy issues. He has appeared at all levels of court, including the Supreme Court of Canada, and in every province of Canada.
Andrew Roman, as an individual: Thank you very much. Thank you for inviting me. I filed an eight-page written brief with my bio and I’d ask you to read it. I’m going to focus on the decision before you, because you are hearing lots of things that you can’t do anything about. I’ve read the speeches of all of the senators in your debates in December, and I also watched Minister Lametti’s presentation. He spoke very eloquently about respecting private autonomy, but the law now, and the law after Bill C-7, is inconsistent with any constitutional idea of autonomy — and you are not here to amend the Constitution.
So let me give you my recommendation right away: If you like Bill C-7, vote for it. If you don’t like it, hold your nose and still vote for it. It’s better than what you’ve got now, and it’s the best you’re going to get for now. So don’t let the perfect be the enemy of the good.
I think it’s clear that there’s going to be a spring election, and if you put in a bunch of amendments, the bill will die and will not return for many years. Meanwhile, many people whose deaths are not reasonably foreseeable will die in intolerable pain, for which you may be partly responsible. I wouldn’t want that on my conscience.
So where does individual autonomy end and state intervention properly begin? Fully respecting autonomy, as Mr. Lametti spoke, really means you have to accept, “it’s my death; it’s my decision.” But up to now, Canada has used the wrong law with the wrong onus. Let me explain.
First of all, medical assistance does not belong in the Criminal Code. That was clear in the Carter decision. This should be an issue of health law and medical ethics.
Second, instead of the state bearing the onus of justifying deprivation of private autonomy, the way the law is now it has been reversed. Individuals are forced to go to court for judicial permission to exercise their right to autonomy. What law reform we have seen has been entirely provided by litigants and judges, not legislators. Just as the state has no business in the bedrooms of the nation, it has no business deciding how long and how much Canadians must suffer before we seek medical assistance for a better death. And despite some disability advocates, people with disabilities don’t want the state to deprive them of their private autonomy any more than people without disabilities.
Let me talk about safeguards now, because some people keep talking about more and more safeguards to protect the vulnerable. I understand their concerns given the barrage of often misleading information to which they have been subjected, but no one has offered any empirical evidence that there is actual widespread abuse of the disabled. There is an anecdote here and there but nothing substantial. And no one will admit publicly, because it’s not politically correct, that they oppose individual autonomy. Instead, people who ideologically dislike MAID will look for legal obstructions and label them “legal protections.” The court in Truchon found that there was no “slippery slope,” so every legal safeguard is a legal barrier. It’s a deprivation of private autonomy that the state must justify.
I can’t resist mentioning the January 25 United Nations report where its so-called human rights experts expressed alarm at a trend of enacting legislation to enable access to medically assisted dying based “. . . largely on having a disability or disabling conditions . . . .”
From my reading of what the UN has been saying, they effectively proclaim as a human right the right to continue intolerable suffering — not for everyone; just for disabled people. Well, that argument was rejected in Carter six years ago. So if MAID is against your beliefs, don’t use it. But you have no moral right to deprive others of their autonomy to reduce their suffering. To preserve unnecessary so-called safeguards is cruelty masquerading as kindness. For the Senate to preserve the unconstitutional requirement for reasonable foreseeability of death won’t achieve anything. I say it’s time for all senators to stand up for Bill C-7 as it is. Thank you.
The Chair: Now we will go on to the next witness, Mr. Albert Gretzky. He is a MAID advocate since his wife Marilyn made the choice to have a medically assisted death.
Albert Gretzky, as an individual: Good morning, Madam Chair and members of the Senate. I thank you for this invitation to participate. My name is Albert Gretzky, loving husband to Marilyn Gretzky for close to 59 years. I am speaking here today because of a wish that she shared during one of our discussions about MAID. That wish was that I would tell others about MAID, and that choice is a choice they can make and about the peace that choice brought her. Today I will address Bill C-7 and how it can provide even further peace to patients and the real outcome of carrying out of MAID legislation from the perspective of the patient and her family to hopefully dispel unwarranted fear.
Marilyn was kind and loving, and nothing was more important to her than family. She was not given to mood swings or irrational decisions. Her response when informed that her lung cancer was stage four terminal was acceptance, quiet reflection and, much later, emotion. Marilyn had carefully thought through all of her options, how she wanted to have her passing to be experienced and then sought out MAID assessments. Seeking out that written request was not a spur-of-the-moment decision. It is for patients like Marilyn, whose death was reasonably foreseeable, that C-7 proposes to remove the 10-day reflection period. Her final choice was tempered by the memory of how lung cancer ravaged her mother. Marilyn suffered both mentally and physically as she helplessly watched her mother, Pearl, deteriorate before her eyes from a pillar of strength and a devoted single mother who raised seven children, to a wasted shadow of her former self. Relief only came for all when Pearl finally passed.
That mournful image stayed with Marilyn for the rest of her life. She knew that dealing with their mother’s death was going to be difficult for our children. Marilyn did not want her children to experience the emotional hurt and memories that she experienced with her mother’s death. She viewed MAID as the loving act of kindness that would lighten that prospect. In the end, her family came to recognize this and loved her even more for her strength.
One of MAID’s precious gifts is closure; the chance to say goodbye. Let me share some of our goodbye. The procedure was at 2 o’clock. Beginning at 10 o’clock, each member of the family went into the front room where Marilyn waited, closed the door and privately shared the time they needed. For her part, Marilyn had an envelope for each of them. Among the items in those envelopes were their birthday and Christmas wishes for the next two years. She was always thinking of her family. Together we then went outside, and on that bright and sunny day in the shade of a giant maple, we laughed, talked and took pictures until it was time. There was one more round of long hugs, kisses and a smiling Marilyn went inside. Her heartfelt wish was that when the family thought of Marilyn, they would see her smiling and smile themselves, rather than bear an unhappy memory like the one she carried of her mother. MAID made that wish come true.
I’m eternally grateful that Marilyn’s desire to leave on her own terms was fulfilled. In the final few days, because of the peace it brought her, we enjoyed many moments together that will stay with me forever. Still, there was a cloud that hung over those personal moments: Marilyn’s fear that her illness would advance and remove her capacity to have the death she chose and the ability to create the memory she wished for her family. The most important issue proposed in Bill C-7 is to allow for waiver of the final consent. While Marilyn experienced great peace knowing she had a procedure date, had she been able to be allowed to waive her final consent and not worry about maintaining capacity, I believe she would have been further at peace, and she may have decided to stay longer.
The children’s initial response to, first, cancer and then MAID was understandably mixed, distressed and even a little angry. But all of that was before they had the chance to sit and talk to us and, as importantly, interact with the health care providers who, as they did for us, answered all of their questions professionally and impartially. Because of the love of her family, Marilyn was able to express all of her wishes and feelings: those personal reflections shared between patients, families and caregivers at the time of life-changing moments.
Bill C-7 offers a significant improvement in regard to the sharing of personal information. It allows for a single individual who cares for the patient to witness their request. This allows the patient to decide whom they discuss their decisions with. This change supports the dignity of patients and does not diminish the safety of MAID.
In recent conversations the family has shared, it took a while, but it was everyone’s honesty and openness that helped them understand and accept Marilyn’s reasoning and choice. MAID did not stop nor stifle conversation, but rather it helped lighten the load.
Finally, as to Bill C-7, my hope is that the testimony of those who have and are experiencing MAID first-hand adds as much, if not even more, weight to your decision than the testimony of those who have never experienced it and are expressing their fears of what MAID might be rather than what MAID is.
I thank you for the time.
The Chair: Mr. Gretzky, we thank you for sharing your journey with your wife. It takes a lot of courage.
The next witness is Dr. Neil Hilliard, palliative care physician from the Delta Hospice Society. The Delta Hospice Society operates the Irene Thomas Hospice, a 10-bed palliative care facility with a supportive care centre next door.
Dr. Neil Hilliard, Palliative Care Physician, Delta Hospice Society, as an individual: Honourable senators, my name is Dr. Neil Hilliard, a palliative care consultant in Fraser East, British Columbia for the last 13 years, and an associate clinical professor at the UBC Department of Medicine. From 2014 to 2017, I was program medical director for the palliative care program for the Fraser Health Authority, the largest health authority in British Columbia. Since MAID was implemented in Canada, the nationally recognized Fraser Health palliative care program has become just a vestige of its former self. My key message pertaining to Bill C-7 is that hospice palliative care needs to be protected, supported and promoted for the well-being of Canadians. The following is why I strongly believe this.
The philosophy of palliative care is to support individuals facing the end of life to be able to live well until they die; 95% or more Canadians wish to live well until they die, versus 5% or less who would choose MAID. While a minority of people want to change the practice of palliative care, the accepted definition of palliative care affirms life and neither hastens nor postpones death. All hospices in British Columbia, excluding faith-based hospices, have been mandated to provide MAID despite this being against the philosophy and practice of palliative care.
The provinces were tasked with the implementation of MAID as well as improving access to palliative care. In British Columbia, a provincial MAID committee was formed, but palliative care was not invited to this committee. The committee decided that MAID must be provided wherever the patient is.
The decision was appealed to the B.C. Ministry of Health. The appeal was supported by the British Columbia Hospice Palliative Care Association; the director of the BC Centre for Palliative Care; the director of the UBC Division of Palliative Care, Faculty of Medicine; and the president of the Canadian Society of Palliative Care Physicians.
The then-B.C. Liberal government came back that there was no such policy as claimed by the provincial MAID committee, and this required further study. However, with the new NDP government, a mandate was received by the Ministry of Health and the Fraser Health Authority that hospices must provide MAID. Over the next three years, hospices in Fraser Health gradually acquiesced to this mandate, except the faith-based St. Michael’s Hospice and The Irene Thomas Hospice, a hospice owned and operated by the Delta Hospice Society.
Today, the Fraser Health Authority palliative care program no longer exists. Rather than funding new resources to support the provision of MAID, hospice palliative care resources have been used instead.
The last issue is that of freedom of conscience. Conscience includes beliefs as well as values. Beliefs, values and mission statements apply to societies and organizations, as well as to individuals, and as such, they should be respected and protected. Without protection and support of freedom of conscience from the federal government, there has been and will be inconsistency in the provision of palliative care across Canada.
Hospice palliative care needs to be protected, supported and promoted for the well-being of Canadians. This requires more than just recognizing freedom of conscience and promoting access to palliative care in the preambles included in Bill C-14. I respectfully request that the Standing Senate Committee on Legal and Constitutional Affairs now considers an amendment to Bill C-7 to protect the freedom of conscience of individuals, organizations and care facilities providing palliative care in Canada.
I will now read the testimony of Angelina Ireland, President of the Delta Hospice Society:
Madam Chair and honourable senators, we send our testimony today from the front lines of a battle to protect the palliative care society we represent. The introduction of MAID has had the unintentional consequence of creating a political movement which threatens to decimate the 50-year-old medical discipline of palliative care — a discipline so beloved by the people of this country that it has been described as a national treasure.
For over 30 years, the Delta Hospice Society has been committed to palliative care. We have provided over $20 million and 750,000 volunteer hours to the public health care system. We fundraised $9.5 million and built two beautiful buildings, a gold-seal flagship palliative care hospice with 10 beds and, next door, a supportive care centre that provides free palliative care support services to the community.
We have been a good and respected partner with the government. We lost that good relationship once MAID was legalized.
The Fraser Health Authority then gave us the directive that our hospice would be required to provide MAID on-site. Our not-for-profit society has a constitution, purpose and a membership that does not include MAID as part of our ethos. We follow the philosophy of every international palliative care association in the world, including the World Health Organization, that MAID is not a part of palliative care. We declined to provide MAID, because it is not part of the provision of hospice palliative care.
Shockingly, the Fraser Health Authority unilaterally cancelled our service agreement and parlayed that into a default in our land lease, which they granted to us 10 years ago. The manufactured lease default permits Fraser Health to confiscate $9.5 million of our assets without compensation. Our solid community work of 30 years is about to be stolen from us. With the introduction of MAID legislation, we are sure it was not the government’s intention to destroy authentic palliative care facilities like our hospice and replace them with MAID centres, but that is what has happened here.
Senators, we believe you would agree that our cherished hospice spaces should not be taken from us by the MAID movement. The vast majority of Canadians want a peaceful, natural death, not a lethal injection to end their lives. Patients and families coming to our hospice know what to expect. They want the palliative care services we provide. Many people are initially reluctant to come to a hospice because they fear that their death will be hastened. So it is crucial to ensure that there are safe spaces like hospices, that do not intentionally end life, to which people can go to for care when they are dying.
Today, we ask the Senate to intercede and provide a mechanism whereby palliative care societies and facilities can continue to exist in this country, euthanasia-free. We ask for the amendment to Bill C-7 that provides safe spaces for the dying. We ask for the right to practise palliative care medicine without government intimidation, coercion and appropriation of resources.
Thank you, Madam Chair.
The Chair: Thank you very much, Dr. Hilliard.
Senators, I want to tell you that Senator Gagné is also here with us today.
We will now go to questions, starting with the bill’s sponsor.
[Translation]
Senator Petitclerc: I would also like to take a moment to thank all of the witnesses we have before us today. They have been exceptional and they help us a lot, through their rigour and sensitivity, to do the work we have to do.
[English]
I have one question right now for Mr. Roman. I’ve read your eight pages. I’ve also read a lot of things you’ve published and your blog. I wanted you to elaborate on the safeguards of Bill C-7 and the fact that you have mentioned that there was no drift in medical assistance in dying. And it is true, but we are expanding and opening access to medical assistance in dying, so I want your perspective on how it will stay that way.
Keep in mind in your answer, if you can, that we want to see, on the one hand, that the rights of individuals like Sylvain Le May, who has testified, to choose be respected, and also that individuals with or without disabilities, who may be in situations of vulnerability, are protected.
What is your opinion on the safeguards in that regard?
Mr. Roman: What you’re dealing with now is a criminal law — that’s the law in front of you — and that’s the real problem, because criminal law is a very blunt instrument; it’s a sledgehammer. And what you deal with when you deal with MAID is a one-on-one decision between a patient and a physician, in a different setting, where the criminal law doesn’t really operate.
What you need to do is to take into account what the Supreme Court of Canada said at the end of the Carter decision, in paragraph 132:
In our view, nothing in the declaration of invalidity which we propose to issue would compel physicians to provide assistance in dying. The declaration simply renders the criminal prohibition invalid.
And here’s the key part:
What follows is in the hands of the physicians’ colleges, Parliament, and the provincial legislatures. . . .
You heard from Dr. Hilliard about the provincial legislature in British Columbia. So whatever safeguards you wish or you believe you need have to be dealt with not in the criminal law, because that doesn’t deal with the interface between the patient and the physician. So I think what you need to do is work with the Canadian Medical Association, the palliative care associations — all the people who regulate what physicians do to ensure that you put in a mechanism of ethics and penalties for violations of those ethics if someone is unduly or improperly pressured to have MAID when it is not in their best interest or it is not their choice. But ultimately you’re never going to be 100% accurate with interpersonal relationships, just like courts don’t get 100% of their decisions right and, regrettably, neither do doctors.
Senator Petitclerc: I have a question for Mr. Le May.
[Translation]
Mr. Le May, thank you for your testimony and thank you for being with us today. You have expressed your point of view very well, but from the beginning of our study of this bill, we have been receiving a lot of information from certain organizations that have fears and are afraid that this bill will send a message that the life of a person with a disability has less value. What do you say to these people?
Mr. Le May: Thank you for the question, Senator Petitclerc. In fact, it is the context in which the bill is being introduced and passed that influences that; that is what I said in my introduction. I would remind you, and I agree with Mr. Roman, that the College of Physicians of Quebec says that physicians must be there to make a clinical judgment and to provide information that is indispensable to the discussion and decision-making process, so that, ultimately, they can act progressively in the best interests of the patient. I hear arguments from other witnesses that not all people with disabilities across Canada are currently enjoying the social participation that they have a right to expect, but that is not the issue that is being raised here. That issue needs to be heard, but outside of the Senate. It is a matter for political and legislative actors to consider. The CERB for people with disabilities was paid six months after the start of the pandemic. Here we are in a second wave and we have had no information, we who are the most vulnerable people in society, about what the Canadian government was going to do to help people with disabilities. We must not mix things up, we must look at them on the same level, because they are two important rights, but they are not played out on the same field.
Have I answered your question?
Senator Petitclerc: Yes, thank you.
Senator Carignan: Your experiences and accounts are extremely interesting and touching. Thank you for sharing them with us. I am very touched, as are all the senators.
I have a brief introductory comment for Mr. Roman: I very much agree with him. I feel that the federal government should determine what constitutes a criminal act and what does not, and I believe the whole process of protection or the administration of consent issues should be left to provincial jurisdiction and the professional bodies. I believe that would be the best thing to do, rather than trying to micromanage.
On that point, micromanagement, I’d like to hear from Mr. Le May in particular on the question of the 90-day waiting period in cases where death is not reasonably foreseeable. What are your thoughts on the need for or utility of this period for individuals whose death is not reasonably foreseeable?
Mr. Le May: Thank you for your question, Senator. Actually, I see no point in having a waiting period. Rather, I trust the judgment of the individual and their relationship with the care team. It always bothers me that, once we know that a person has shown they are vulnerable—in this case, we know it’s someone with a disability—and they request end-of-life care, it’s as if our first instinct is to question their judgment because we know they are vulnerable. That is how people without disabilities see it. The treatment team’s role is to ensure that the decision is informed, fair and equitable, and is not made because services, home support or psychological support are unavailable.
I work with students with mental health issues, and teachers often question a student’s success and integration because they come with a reasonable accommodation letter allowing them to prove their true potential. Because these students receive that letter, teachers question their success, but they never question the other 290 students in their lecture hall. I’m saying that a person’s vulnerability must be welcomed for everything it represents and we must have mechanisms in place. The professional orders, some of which I have named, do have mechanisms, but I come back to the individual’s judgment. Just in terms of the Truchon and Gladu case, I believe that Quebec has already been thinking about this issue for a very long time, and that’s not to say that the other provinces may not also be a step ahead. Moreover, the Collège des médecins du Québec has attempted to set some guidelines.
So, to answer your question, Senator Carignan, the notion of time should not really apply. I would go back to the relationship with the individual requesting this care and how the request can be handled.
Senator Carignan: Rather than a minimum waiting period, should the proposal be for a maximum waiting period? Basically, if the system delays the request, it is also prolonging the person’s suffering. Or should we set no time limit at all and let the regular process run its course?
Mr. Le May: My personal belief is that we should have no waiting period at all. We know that some time will pass; tests always have to be conducted. I go back to my friend Robert. When he had confirmation that I could be there if he needed to take his medication, he was able to die from his disease. Sometimes just making the request takes the weight off a person’s shoulders. It is a bit like an insurance policy; I know that if I change my mind, that choice is available.
Senator Carignan: I understand. Thank you very much.
[English]
Senator Batters: My question is to Gabrielle Peters. Ms. Peters, thank you very much for your important presentation to us today. Your key perspective is valuable as we consider the very real implications and consequences of Bill C-7 on the most vulnerable people in our country and our communities.
In a statement you wrote that was earlier provided to us, you ended with this powerful conclusion:
I know Bill C-7 must be stopped because I know passage of this bill will result in preventable deaths of disabled people. I know this because I know those already happen. I know they already happen because I was almost one of them. Please let’s start again anew with genuine consultation and sincere effort to involve and prioritize those most at risk.
Ms. Peters, I would like you to tell us more about how poverty uniquely impacts the lived experience of disability and specifically this Bill C-7.
Ms. Hawes: Thank you very much, Senator Batters. I will respond on behalf of Gabrielle with her words.
First of all, she would like me to ask or to comment. She says:
I would just like to note that I’m here speaking today as someone who says that this bill is harmful and you are asking those who disagree why I feel that way. This strikes me as very strange. Whether this bill will cause harm is not a question because it already is.
And then in response to the poverty question, these are her words:
Poverty in any circumstance is a violent and soul-crushing experience that wears you down and is constant in compounding of harm. But because we live in an ableist society, so many of my own basic needs as a disabled person are deemed medical or special or even luxury items. Brick-and-mortar places that are accessible often tend to be at higher price points. Tech that is essential for accessibility is expensive, and something like recreation can be limited to non-existent on the lower end.
So there are many additional costs, and at the same time many cost-saving options and entry-level jobs that are inaccessible to disabled people.
On top of all of this, there is the issue of urban planning and accessibility. Better neighbourhood accessibility is often associated with a better postal code. Disabled poor people face disproportionate barriers with the least means to mitigate them.
Senator Batters: Thank you. My second question is also to Ms. Peters. Ms. Hawes, thank you very much for assisting her today. I think it’s one thing for us as parliamentarians to hear from professors and legal experts about a bill, in particular this bill, but it’s quite another on a bill like this to hear from actual vulnerable people that this type of bill would impact very directly, and that’s what I want to hear more about. Could you please tell us more about dignity and independence and about how you believe those particular definitions of those words reflect class privilege and ableism?
Ms. Hawes: Certainly. On Gabrielle’s behalf, she says, and would like me to tell you, that: “Dignity does a lot of work for ableism.”
As an example, one of the most common comments that she’s heard and frankly internalized and struggled with initially is the indignity of having someone assist with bathroom needs.
One day I noticed I felt a loss of dignity with some nurses and none at all with others and I realized it was not the act of having someone help me wipe that had any harmful impact, but it was the person doing it. And I also realized I felt the same loss of dignity with those same individuals even when requesting something as simple as a glass of water. Eventually I realized it was not I losing my dignity, but me being affected by their lack of dignity.
Class also plays a role in how we define these words. I find it extremely undignified to selfishly demand legislation to fulfill your own wants while not caring about the impact it will have on disabled people, and particularly some of the most marginalized.
Senator Batters: Thank you. I really appreciate that.
Senator Tannas: Thank you to all of this panel. This is an extraordinary assembly of people and views, all of which are compelling.
My first question is to Dr. Hilliard. I wondered, as you were describing your situation, if there was a client that entered your palliative care sphere and then asked for MAID, how would you or how have you responded to a situation like that? Would you flat out refuse? Do you move them? How do you approach that?
Dr. Hilliard: Thank you, Madam Chair. I presume you’re talking about a patient that I would be seeing in consultation. We would explore the request for MAID. So we would like to know whether this is just a thought in their mind that they would like to have medically assisted death or if this is something that they’ve been thinking about for a long time and that they were certain this was something they wanted to do; or if it was something they wanted to have in their back pocket so that if, in the future, their suffering did get worse, they would be able to seek this option, and whether they actually were suicidal or not and depressed. So we would explore the reasons behind it and if there was any reason why they might be coerced by others in their relationship.
Senator Tannas: Dr. Wales and Senator Mégie, can you talk a bit about palliative care and MAID, and in what percentages you think they actually can and do coexist today, or if this is a winner-and-loser kind of approach where palliative care and MAID can’t coexist, and they actually compete and there is a winner and a loser? As we heard from a witness yesterday, in Europe, after many, many years, palliative care has, according to him, been significantly diluted and reduced. Is that a natural consequence of where things are going here or do you firmly believe that palliative care and MAID can coexist?
Dr. Wales: Thanks for the question. I think we do feel that palliative care and MAID can coexist. Our experience providing MAID within the context of palliative care speaks to that.
I think, first of all, we have to affirm that MAID should be the collective responsibility of the medical community and should never be conflated solely with palliative care. It belongs to everybody. We all have a responsibility to provide MAID to a patient who is requesting it regardless of our specialty. There’s been significant pushback from the palliative care community because there is often the false assumption that palliative care providers will be the de facto MAID providers, and that’s not the case. There are many palliative care providers that don’t provide MAID, and I think that’s completely acceptable. We certainly respect conscience rights in our centre.
In terms of how palliative care and MAID coexist in a health care system, in our centre, there are 20-some physicians; a few of us provide MAID, and so we provide MAID to the patients of the other physicians in our home palliative care group.
In Toronto, I can speak to the fact that many palliative care units do provide MAID and there is the integration of palliative care and MAID services. As far as I’ve heard and been involved in MAID in these institutions, there has been no problem with this integration of MAID and palliative care.
There have been some issues with faith-based facilities declining to provide MAID and requiring individuals to transfer to alternate facilities to receive this service, often at a very vulnerable time in their lives, which I think is a disruptive practice and can be considered problematic for many people. But on the whole, I think people often get stuck on the definition of palliative care as saying that palliative care neither hastens death nor prolongs life. I don’t think any field of medicine has in its definition that they provide MAID. I think definitions must change and I think we must see MAID as superseding the narrow definitions we have of individual medical specialties. I hope that answers your question.
Senator Tannas: Thank you.
[Translation]
Senator Mégie: I agree in part with my colleague who has just spoken. Palliative care does not interfere with medical assistance in dying, and MAID does not interfere with palliative care. However, sometimes we see a dichotomy. When people enter a hospice, we already know that they want to live out the rest of their life and do not want to end it right away. That’s the philosophy of palliative care: guide them as they live out their life to the end. That’s therefore the care that the individual must receive.
On the other hand, the fear of some palliative care colleagues is that palliative care beds may be occupied by individuals who want medical assistance in dying, which could have been done in another setting. Everyone who advocates for that... When a number of those patients take up palliative care beds, palliative services are compromised. I understood from our colleague that, in some palliative care facilities where he practises, it’s acceptable for them to provide medical assistance in dying. In Quebec, a few palliative care facilities offer the option on site.
People who work in hospices and palliative care units have been trained to provide palliative care, not to administer medical assistance in dying, which requires another type of training. However, in my opinion, they do not compete with each other. They should coexist, thereby offering Canadians a choice: I choose palliative care or I choose medical assistance in dying.
Sometimes, people in palliative care begin to realize that they are in decline. They don’t like to see themselves like that and they think: “Instead of waiting for it to happen, I have said goodbye to my loved ones, maybe I could choose medical assistance in dying.” They won’t be denied. Agreements exist. As physicians, if we do not want to provide the service ourselves, we must find a colleague who will.
[English]
Senator Tannas: Thank you.
Senator Martin: Thank you very much to our witnesses on this panel. I have to concur with my colleagues who have just expressed their thanks and how emotional this panel has been, listening to your personal stories and your perspectives. Thank you very much.
Senator Tannas almost read my mind. I had these questions of how palliative care and the MAID service or regime intersect and how this can work. But in the case of British Columbia, where I live, I know the example of the Delta Hospice Society and what has happened here.
Dr. Hilliard, you mentioned the change in government, and sometimes the politics of a provincial government could impact what happens in this entire regime.
My question is to Dr. Hilliard in terms of perhaps responding to what you heard Dr. Wales and Senator Mégie talk about. I think by province there are differences. Using B.C. as an example and the kinds of pressures that have been experienced, specifically, Dr. Hilliard, how could hospice palliative care be supported and protected in this federal legislation? You talk about how the Delta Hospice Society is a 30-year-old facility and palliative care is a 50-year-old service, program and regime. I’m trying to see how we can protect what we do well, as well as look at what’s needed for MAID. Would you speak to these questions, please?
Dr. Hilliard: Thank you, honourable senator. I think hospice palliative care could best be supported by the federal government by deeming hospice palliative care an essential service through the Canada Health Act through Bill C-7, as was medical assistance in dying through Bill C-14. Providing information to patients requesting MAID is not sufficient if true palliative care is not accessible. Further to this, the federal government can promote palliative care by providing information about the benefits of palliative care and how to access it.
Senator Martin: Thank you. I have been asking various witnesses about conscience rights or the issue of conscience. Minister Lametti has reassured the committee that protections already exist. Senator Mégie talked about how there will be physicians who will provide and others who have the right not to provide MAID. But I’m concerned about what we’re hearing from physicians who say that in practice, with the MAID regime, they feel the pressure. And there seems to be disagreement on the significance of an effective referral, when self-referral mechanisms are in place and physicians have indicated they’re happy to provide that information. When the CMA has explained that a referral is an endorsement of a procedure, there seems to be no reason for objecting physicians to be forced to refer patients for MAID and yet it is happening in practice.
From your perspective, is more explicit conscience protection needed at the federal level? And why is conscience protection needed for institutions that provide palliative care?
Dr. Hilliard: Again, thank you for the question. I’ll deal with the institutions first. There is no protection for institutions for conscience. Contrary to the preamble in Bill C-14 committing to facilitate palliative care, we’ve seen how palliative care programs and hospices have been decimated since the introduction of MAID. All non-religious hospices have been forced to provide MAID even though it goes against the practice of palliative care. To ensure integrity of holistic palliative care as an accessible option for those who do not want MAID, MAID and palliative care must be kept as separate systems. Without protection, we risk losing our specialty. Without protections, the 95% of Canadians who wish to live well until they die naturally will face limited access to true hospice palliative care.
As far as referrals go, it’s not the same across Canada. In Ontario, palliative care physicians and other physicians must refer if they have a request and then are implicit in providing MAID through the referral. In British Columbia, we don’t need to do that because there’s a MAID coordinating committee. If we provide information to the patient, the patient can make a self-referral.
The problem for palliative care providers is that if I’m working in a hospice or on a palliative care unit, I am the most responsible physician for that patient. And if I’m a conscientious objector to providing MAID, I will be put in the position of either transferring the care to the MAID provider — again making me implicit — or actually being part of the procedure itself and being implicit that way.
Senator Boniface: Thank you to all the panellists. This has been very interesting and I appreciate those who have shared their personal experiences.
My question is for Senator Mégie. Thank you for appearing and also for your insightful comments from a 30-year career. I think it’s an important message here for this group.
We have heard some discussion around palliative sedation. Could you give us a little more information on what level or how it works between palliative care and MAID, and how sedation works as part of the palliative care scheme?
[Translation]
Senator Mégie: Palliative sedation is a treatment provided in the overall context of palliative care. When symptoms are no longer controllable, the person is suffering a great deal, both in terms of pain and other discomforting symptoms. At that point, the person’s condition is assessed, because they need to be about two weeks away from the end of their life; the end of life must be imminent. At that time, we talk to the family and the individual to find out whether they would like to continue treatment. The individual may not be able to continue treatment or may not be able to go on if they are showing signs of something called delirium, a state of consciousness in which they cannot decide for themselves. If that happens, they are given medication so that they can fall asleep, so that they don’t feel that discomfort, until natural death ensues. So, that is how it happens.
[English]
Senator Boniface: Again, Senator Mégie, I just wanted to get your view on consistency of palliative care. I appreciate your experiences in Quebec. I live in Ontario, and I have gone through this with two family members, both in rural areas, and I found very inconsistent care and availability. I’m wondering, in your association with colleagues across the country, if you get a sense of inconsistency in terms of care and accessibility; if that is a factor; and, in particular, the distinctions between urban and rural access.
[Translation]
Senator Mégie: When it comes to major cities, there are more choices. Some hospitals have palliative care units and there are also hospices. The accessibility is quite good.
However, according to the comments and the reports that we’ve received, as soon as you move away from the major cities, the situation is a little more difficult. Nevertheless, each province should work to try to find ways to improve the accessibility of care, because health care falls under provincial jurisdiction. That said, ongoing training for people who want to work in palliative care is a key turning point for facilitating that care.
[English]
Senator Boniface: Thank you.
Senator Boyer: My question is for Dr. Wales, and then I would like Senator Mégie to respond as well.
We know that Bill C-7 requires medical practitioners to inform patients of reasonable and available means to relieve their suffering, and this includes pain management, palliative care and, in some cases, surgery. Given your expertise in the field and your knowledge of MAID, do you believe that Indigenous people living in remote areas and who have limited access to pain relief treatments and surgical care could have the right to MAID denied or delayed because of the lack of access to these health care options?
Dr. Wales: I think we can all agree that the lack of medical services in general in any underserved area, in any Indigenous community, is a national shame, and it’s something where extra legislative measures should be taken to ameliorate. I would also say that in settings where good palliative care is not available, it’s possible that MAID services are also not available.
The most important thing we can do is advocate for medical care in general to be available, and that includes social services that affirm a patient’s dignity and autonomy as well as palliative care and MAID services. I think we can all agree that should be advocated for.
Was the question whether MAID could be provided in settings in which, for example, palliative care is not available?
Senator Boyer: Yes. If they have limited access to pain treatments and surgical care, would the right to MAID be denied or delayed because of a lack of access to health care options?
Dr. Wales: Unfortunately, it’s out of my experience so I can only comment hypothetically. I would suspect that a diligent MAID provider would ensure that all treatments that are desired by a patient be made available, but I can’t speak to that particular situation.
Senator Boyer: Thank you, Dr. Wales.
[Translation]
Senator Mégie: Based on my experience in Quebec, I don’t think that people turn to MAID because of a lack of access to palliative care. I say this based on my experience and on some of the reports that we’ve received.
However, according to all the reports, and even according to the letter from our minister, all the people who requested medical assistance in dying were already receiving palliative care. In general, people think that, if a person requests MAID, the reason is that they haven’t received palliative care. This explains why they’re suffering. No, people have often received palliative care before requesting MAID. So in my experience, no.
The provinces can then make arrangements because, as I said, this matter falls under provincial jurisdiction. The provinces can make arrangements. If we then look at the other categories of medical care, palliative care isn’t the only one where there’s a lack of accessibility. All areas of health care have these types of shortcomings. So, personally, I don’t think that this is the only reason that people turn to medical assistance in dying.
[English]
Senator Boyer: Thank you, senator.
[Translation]
Senator Dupuis: My first question is for Mr. Le May and my other question is for Senator Mégie.
First, I want to thank the witnesses whom we heard from this morning. The presentations are very impressive and touching. The presentations that we’ve heard today will leave a lasting impression on us.
Mr. Le May, in your presentation, you spoke about students who ask for an accommodation, and who are looked down upon, in a certain way. It’s good that you brought this up because it reflects what we call, in education, the “Pygmalion effect.” This means that if you tell someone that they aren’t good, they won’t be good, even if they’re very good.
My question for you is as follows. Based on your personal and professional experience, do you believe that we shouldn’t consider a person with a disability vulnerable? This person may be placed in a vulnerable situation if they have a particular illness or if they’re going through a particular situation. However, should we consider a person with a disability a full-fledged person, without giving them a vulnerability status that they don’t necessarily request?
In any case, this is what we heard from the witnesses who appeared before us.
Mr. Le May: Thank you for the question, Senator Dupuis. I’ll just remind you that living is a progressive disease. Everyone here today will, at some point, reach the end of their lives or lose their capacities. That’s the nature of being human.
The issue that you’re raising is quite relevant. If we look at the issue from our “normative” healthy perspective, the way that we see disability—for cultural, social or religious reasons—ensures that we’ll question the request that someone puts to us.
However, as everyone pointed out, all the witnesses showed their most vulnerable side. Our role as a society is to welcome this vulnerability and to not shut the door because of our judgment and our values.
If a person requests medical assistance in dying, as Senator Mégie explained, through palliative care, but that person changes their mind along the way, there must be ways to accommodate that request.
There must always be a need to talk about this. Otherwise, it’s as if we were questioning the identity that the person with a disability wants to establish, which is to be normative in a society. They show you their difference in order to be part of your team, but you constantly send them the message that they’re a different person. We see this in universities. There are doubts about the ability of people with disabilities to enter the labour market, whereas this question isn’t asked with regard to student groups as a whole. The same is true for the sensitive issue of end-of-life care.
I want this request to be granted. Afterwards, let’s leave this space for social workers and health care professionals. As Senator Mégie said, there are already authorities and people who have received training. If they need more training on biases, because we all have them.... You may have read the article in La Presse about a doctor making a mea culpa with regard to training future doctors to address the reality of Indigenous people. The doctor acknowledged that he may not have been very receptive to the First Nations clients who came to his office when they told him about this reality. It’s sometimes necessary to acknowledge that we’re open to changing the paradigm.
Senator Dupuis: Thank you, Mr. Le May. Senator Mégie, I want you to clarify an issue for our committee.
I’m talking about the commission on end-of-life care’s 2019 report regarding Quebec’s end-of-life care system. The report focuses on statistical data from 2015 to 2018.
Page 90 talks about continuous palliative sedation. You explained that this sedation is administered when the end of life is imminent, in either a medical or institutional setting. What strikes me about the statistics is that, in 54% of the cases, the reason for the sedation was psychological or existential distress. The distress was resistant to treatment and it seriously compromised comfort. In 28% of the cases, there were reports of untreatable and intolerable pain.
I can see that a practice has been established. This practice is adopted by a doctor in response to a given situation in the course of an illness or a life. In other words, in 82% of the cases, the use of continuous palliative sedation speeds up the person’s death. This can even be done in a situation where the person is no longer conscious. At that point, a third party gives the doctor permission to administer the sedation.
I have trouble reconciling the fact that it isn’t acceptable for a person to choose the timing of the end of their life on their own according to the currently applicable legal criteria, meaning intolerable suffering, whereas it’s acceptable for doctors, on their own initiative or at the request of a third party, to administer continuous palliative sedation.
Do I understand correctly what constitutes continuous palliative sedation?
Senator Mégie: Continuous palliative sedation is really when the symptoms are intolerable—I mean the symptoms, not just the pain. The symptoms become intolerable, and we normally need to consider what the patient is telling us. The intolerability is based on what the patient tells us, not on what we think the patient should have. If there’s vomiting of blood or convulsions, it’s difficult to accept. This causes psychological distress along with physical medical distress. All these causes play a key role in the decision regarding palliative sedation. The only situation where the person can’t make this decision on their own, and the decision must be made by their loved ones, is, as I said, in the case of a patient suffering from delirium.
According to the statistics, about 80% of patients admitted to palliative care have already entered a delirium phase. This phase is often difficult to diagnose, even for fairly experienced health care professionals. Sometimes it’s difficult because certain patients seem calm. It’s a type of calm delirium. The other type, the agitated form, is more striking. The difficulty of the diagnosis makes this point in time more significant. We must ask the families how they see the mother’s, father’s or loved one’s situation progressing. However, in all other cases, the person is conscious and the doctor speaks with them. Other symptoms are truly intolerable, in addition to the pain or apart from the pain.
[English]
The Chair: Senator Dupuis, I have let you go on too long.
[Translation]
Senator Boisvenu: I don’t have a question. However, I want to say something to the witnesses, who have touched me deeply.
I believe that, when we pass a bill such as Bill C-7, we draw heavily on our personal values, which often conflict with our moral, religious, community or cultural values. We’ve seen this in many presentations. It’s quite a challenge to pass this type of legislation.
I first want to congratulate our witnesses this morning. They provided some very personal accounts of how they’re facing this situation. It isn’t any easier for us, senators, who must ensure that Bill C-7 won’t create more victims than Bill C-14 in 2016, and that those who must look for other ways to alleviate their suffering won’t be forgotten.
I want to thank everyone who came to share their life experience and the loved ones who came to speak about the experience of their loved one’s death. Thank you.
[English]
Senator Keating: I want to join in with my other colleagues to thank the presenters this morning and the witnesses for their powerful statements. My only regret is that I wish I had heard some of these earlier. Thank you. You have been heard.
My question, I think, is for both Dr. Wales and Senator Mégie.
[Translation]
Senator Mégie, you have already partly answered the question.
[English]
We have heard a lot during the testimony about the interchangeability, if I can use that expression, between palliative care and end of life. There have been suggestions that better palliative care would lead to greater refusals of MAID. I would like to hear you on that discrepancy. What I understand from palliative care is that, when it exists, it’s really more of a program of assistance at all levels toward the end, and that the choice of MAID or other end-of-life services are precisely that: end-of-life interventions.
Can you elaborate on that?
[Translation]
Senator Mégie: I want to fully understand the question.
Senator Keating: My point is that medical assistance in dying has often been portrayed as interchangeable with palliative care. In other words, better palliative care would lead to greater refusals of medical assistance in dying and would make medical assistance in dying unnecessary. However, I have issues with this.
Senator Mégie: I also have issues with this.
The people who ask about medical assistance in dying and who want to receive it get the information well in advance and at any time. They seek information when Bill C-7 is being discussed or when a neighbour or friend is having issues in the hospital. They seek information about all aspects of the matter. At that point, people can make their decision and say, “I don’t want to waste away,” “I don’t want to be in pain for a long time,” or “I don’t want this.” People can make an informed choice. Sometimes, a person isn’t even sick yet, but when they become sick, their choice is made. This isn’t because of a lack of access to palliative care.
Initially, the person has their insurance policy and says, “I’m comfortable. I know that I can choose medical assistance in dying whenever I want.” Sometimes, the person hasn’t even requested medical assistance in dying when the end of their life comes. The end of life, remember, is part of a continuum. The person is receiving palliative care, and when they reach the end of life and their health has deteriorated significantly—this is called the end-of-life phase—this stage is part of a continuum with palliative care.
[English]
Senator Keating: Dr. Wales, do you have anything you would like to add?
Dr. Wales: Certainly, there are patients who come to me at the beginning of their introduction to palliative care saying, “I would like MAID because I’m afraid of uncontrolled pain at the end of life.” After a brief discussion of what palliative care can offer, they say, “I think good palliative care is actually what I want.”
On the flip side of that, our experience at our centre shows that, as I said in my opening, palliative care is not a panacea. There are certain kinds of suffering to which palliative care would not be amenable. And there will be certain kinds of suffering for which patients choose not to engage in treatment. That’s their prerogative.
It’s false to say that, with good palliative care, there would be no MAID requests because that is completely antithetical to our experience. We have a higher rate of MAID in our home palliative care setting, which provides a very high standard of care and a very high standard of comprehensive palliative care, including interdisciplinary support from a variety of professionals. Even in that context, there are certain kinds of suffering that won’t always be amendable to palliative care, and we support a patient’s right to exercise their autonomy and control in those contexts.
Senator Keating: Thank you very much.
Senator Kutcher: Thank you again to all the witnesses for helping us through these issues today. I have two brief questions.
Mr. Gretzky, thank you very much for sharing your story with us. It’s essential that this committee hear from people who have lived your experience. In your opinion, was your MAID experience the same as what a family might go through when losing someone that they love to suicide?
Mr. Gretzky: Oh, good heavens. With all due respect, suicide is actually the complete antithesis of MAID. I can speak to that because I have experience with both. A friend who was living with us, in the middle of the night, secretly went out to the barn — I’m sure in distress — and hanged himself. That left us questioning what we could have done. Did we miss something? Did we say something? Guilt was a serious part of what was left after that event.
Now in Marilyn’s case, it was nothing like that at all. Hers was a celebration of life. She was surrounded by those she loved and who loved her. There were no questions left unanswered. Everybody knew what it was that she wanted, and they understood that Marilyn took that choice not in spite of everyone’s love but actually because of it, because she wanted them to be able to see her as a happy individual.
Senator Kutcher: Thank you very much, Mr. Gretzky.
Dr. Wales, we’ve heard compelling testimony from many witnesses about the need to ensure health and human resources are fully and equitably available across Canada. This is something I strongly support, and I hope that all parliamentarians would be committed to addressing these inequalities. This is a reality that I expect that you have also encountered.
As a physician who provides both palliative care and MAID, how do you engage with persons who request MAID while they are receiving palliative care? What is the process you go through?
Dr. Wales: Thanks for the question. I only see patients who are receiving palliative care because I work in a palliative care setting. All of the patients I see with requests for medical assistance in dying are already receiving palliative care from myself or from one of my colleagues in our centre.
Once we receive a report from one of my colleagues that a patient desires to explore medical assistance in dying, one of assessors sits down with the patient and discusses the reasons why. We know that a request for hastened death does not always imply a wish to die. It could always be the result of an unmet need. It is really important in our assessment processes that we make sure there are no unmet palliative care needs that could ameliorate someone’s suffering.
It is also really important for me in a MAID assessment to make sure a patient has an accurate understanding of what their natural death could conceivably look like, because we see a lot of misconceptions. And so it’s very important for me to affirm that palliative care can offer dignified and patient-centred natural deaths in addition to MAID deaths. It’s important for us to always affirm that a natural death can be as dignified as a MAID death insofar as the definition of dignity is quite amorphous and poorly understood.
Essentially, it is a process in assessment of ensuring that a patient is informed of all of their options, ensuring that they have the capacity to make the decision and ensuring that they have exhausted all of the treatment options that might be available to help their suffering. Often, just the act of going through an assessment and being found eligible can be really therapeutic to a patient to let them know that, at the end of life, they will have a sense of control. The intolerable can become tolerable once we affirm the fact that someone has control over their end of life.
Does that answer your question?
Senator Kutcher: Yes. Thank you very much for that. Much appreciated.
The Chair: I have a few questions. Senator Mégie, you’ve been in the palliative field for a long time. When you planned your palliative care centre and when you started receiving patients, would you be looking at different factors to accommodate patients, such as age, gender and race? What are the things that you would consider when you were planning the palliative centre? All people’s needs are not the same. The needs of an older person may be different from another person’s needs. How would you plan for this?
[Translation]
Senator Mégie: We first plan for the person’s needs upon admission. The needs may differ, as you said, depending on the person’s age or illness.
We also take culture into account, because at some point, depending on the culture, there are certain rituals at or before death. These people plan the stages with us. When we meet with loved ones, they tell us the person’s wishes. This is comprehensive care. We look at the health status and its development, but also at the religion and the whole situation of the person. It isn’t just a drug or a treatment. It’s holistic care, right to the end.
Madam Chair, I’d like to add something to my response to the question from Senator Dupuis, who said that palliative sedation speeds up the dying process. I must say that no, palliative sedation makes it possible to put the person to sleep so that they don’t have to suffer until the disease prevails, as it should. That’s why this stage is planned for people who are at the end of their lives and whose death is truly imminent. That’s what I wanted to add.
[English]
The Chair: Thank you very much.
I’d like to go to Ms. Hawes. You had something you wanted to clarify; would you like to clarify this to all senators now on behalf of Ms. Peters?
Ms. Hawes: Thank you. I appreciate the opportunity to correct some information that was given previously that there’s no documentation of abuse of disabled people in Canada. In fact, according to a recent study by the Disabled Women’s Network, disabled women in Canada experience violence at twice the rate of non-disabled women. Additionally, 52% of human rights claims — the majority of human rights claims — in Canada are around human rights violations. That’s something we have to keep in mind in the context of MAID and the vulnerabilities for people who may have fewer resources to live well and to live autonomously and with dignity.
The Chair: Thank you for that clarification. That’s helpful. I want to say to Ms. Peters, to Mr. Le May and to all the witnesses here that we heard what you had to say, and right at the beginning of these hearings, we had someone else who also explained some of your realities. I want to thank all of you for being here today.
Senators, I would like to end this part of the panel by saying that, as you know, we were hoping that Ms. Gladu would be with us. We just heard this morning — we’ve been in touch with her for a few days. She was hoping to come, but she’s not able to. She has provided us with a letter, and I’ve asked Senator Petitclerc if she will read her letter to us.
[Translation]
Senator Petitclerc: I want to thank Ms. Gladu. We’ve never had the chance to meet. I want to thank her for trusting me to read these words, which I have with me. I’ll read this letter signed by Nicole Gladu.
I’m a survivor of the pre-vaccine polio epidemic in 1949, narrowly saved from the terrifying iron lung after spending three months in a coma that left me more or less paralyzed from the neck down. Thanks to months of physiotherapy, I was able to regain the use of my legs. Before I underwent surgery at the age of 10 to correct my severe scoliosis, the orthopaedic surgeon told a class of medical students that, with just half a working lung, I wasn’t expected to survive... but that he had no intention of standing in the way of my desire to prove him wrong.
In fact, I dreamed about my life before living my dreams. I worked as a journalist, trade unionist, information officer and communications director, in both the public and private sectors, in Montreal, Quebec City and New York, until the age of 40.
The illness that I had fought so hard to vanquish in my childhood came back to haunt me. I’m part of an endangered species of patients most seriously affected by the virus who make a spectacular recovery only to fight a hopeless battle, this time against post-polio syndrome, a degenerative muscular disorder. It occurs when the muscles that were more or less spared by the virus in childhood and that had to overcompensate for the others stop regenerating themselves.
So, for 25 years, I had to unlearn my winning formula for beating polio—constantly pushing my limits—and learn instead how to recognize and respect those limits. That is the toughest challenge I face every single day.
I have been officially disabled for more than 20 years now; my physical condition continues to deteriorate progressively but at an increasingly faster rate. The sclerosis reactivated by post-polio syndrome and a serious case of osteoporosis distort my body a little more each day, throwing off my balance, causing a stoma hernia and mercilessly compressing my half-lung. Every breath has become a conscious effort, demanding three-quarters of my waning energy.
In the absence of a cure and despite the care of a highly professional multidisciplinary team at the Neurological Institute and Royal Victoria Hospital, in Montreal, I remain powerless. At 75, I worry more about the quality of my life than about prolonging it. I refuse to spend the rest of my days in a private or public facility; as my mother’s curator, I saw what that was like.
People are allowed to stop or refuse treatment even if it could result in death, but what about when there is no treatment?
What I am asking you for today is to show respect to everyone who, like me, has long been staring death in the face, albeit not always as dramatically as the expression “terminally ill” might suggest.
I harbour no bitterness, having seized every opportunity that came my way. I am filled with countless wonderful memories, instead of regrets. However, living with no hope without falling into despair is becoming increasingly difficult.
For myself and many others, the passage of Bill C-14 was an unexpected, cruel and upsetting setback. I had been hoping to finally gain access to medical assistance in dying, something Quebec’s end-of-life legislation did not provide, but the Canadian government’s close-mindedness deprived me of that.
I think I deserve as much compassion as my cat Gitan, who was put to sleep in my arms at the age of 18 after a long illness. I should be able to end my life, a life that has been full, before I am plunged into an existence of grotesque dependence. Nevertheless, I want to be able to do so effectively and without suffering, surrounded by my incredible friends, a flute of pink champagne in one hand and a canapé of foie gras in the other, as I watch the sun set over the river one last time from my living room window.
Must I resign myself to making a final trip to Zurich, the only place in the world where a non-resident can seek this type of professional assistance through the Dignitas organization?
Fortunately, in the meantime, I learned of a Montreal lawyer specializing in health cases who was about to stand up for the right to medical assistance in dying. I joined the challenge before the Superior Court of Québec, and after months of expert testimony, Justice Christine Baudouin issued a lengthy decision in favour of medical assistance in dying.
Signed Nicole Gladu.
[English]
The Chair: Thank you very much, Senator Petitclerc. Thank you, everybody.
We just sent you a letter from Minister Hajdu covering palliative care, so you should have that in your emails as well.
Senators, as you know, this is our final panel of witnesses. We are going to start with Dr. Chantal Perrot, a family physician practising in downtown Toronto. A significant part of her medical practice over the years has been providing psychotherapy and treatment for mental disorders. She has been a MAID assessor and provider since June 2016. Dr. Perrot, please proceed.
Dr. Chantal Perrot, as an individual: Madam Chair and honourable senators, thank you for the privilege and opportunity to meet with you today. I look forward to answering your questions. I am deeply appreciative of the work you do as senators and the key role you play in our democracy in Canada. You have the important task of hearing from all Canadians, processing an enormous amount of information and then making decisions that affect all of our lives.
Bill C-7 is an important piece of legislation that I hope will eventually lead to further amendments to the Criminal Code to bring the MAID legislation more in line with the Supreme Court Carter decision and the Canadian Charter of Rights and Freedoms. My remarks today are more fully developed in the brief submitted to the committee.
There are many voices weighing in. You will perhaps not have heard from many of the more than 14,000 people who have already chosen MAID or the many people who now and in the future will choose MAID. MAID is a very private decision and still carries some stigma in our society. Many people are not going to publicly speak out about their decision to seek MAID. It is important that the discussion about Bill C-7 takes into account those who would access MAID and the lessons we learned from those who have experienced unnecessary barriers. I hope to represent their views and interests in some measure.
First, let me state that I am grateful to live in Canada, where compassionate end-of-life care, including MAID, is available. It is a privilege to provide MAID. My patients teach me each day about strength, courage, resilience and integrity. I applaud the Canadian people for their advocacy for the right to die and the Canadian government for passing legislation making this significant relief from suffering possible. Supporting the right to die is not promoting MAID, nor is it suggesting that the lives of people who choose MAID are not worth living. The determination of whether or not a life is still worth living or enduring belongs to the person — herself, himself or theirself.
As has been mentioned, I am a family physician. A significant part of my medical practice is providing psychotherapy and treatment for mental disorders. I have been a MAID assessor and provider since June 2016, and MAID is now a significant part of my clinical work.
In 2017, I joined with a group of colleagues and community volunteers to establish MAiDHouse to address the issue of access. MAiDHouse is a non-profit organization devoted to providing eligible patients with a supportive, inclusive and homelike setting, where they may receive MAID when home or other options are not available to them. We hope to open our doors this year.
While I appreciate the government’s efforts to amend the current legislation, and while I support a number of the proposed changes, I have some grave concerns with Bill C-7 as it now stands, particularly as it concerns access and consent. Here are my recommendations and thoughts.
First, repeal the criterion that requires a person’s natural death be reasonably foreseeable. I strongly recommend removing “reasonably foreseeable natural death” from the legislation altogether, and in so doing, remove the proposed two-pathway system. Reinserting it in the safeguards and the creation of two pathways unnecessarily complicates the assessment process, does nothing to clarify the meaning of “reasonably foreseeable natural death” and does not provide an added safeguard.
Next, remove the exclusion of mental illness as the sole underlying medical condition. This exclusion is discriminatory, stigmatizing and unjust. Please note that MAID is not suicide and suicide is not MAID. Suicide is a significant public health issue that warrants intervention, help and treatment. MAID is a personal, conscious, deliberate and rational choice in response to an intolerable situation.
My third is to allow people who have been assessed and approved but lose capacity before receiving MAID to still move forward without having had to set a date for this clause to be actionable. There should also be no requirement that the person must be recognized to be at risk of loss of capacity, as anyone can lose capacity at any time.
Fourth, requiring consultation with a clinician with expertise is unnecessary, impractical and causes barriers to access. In practice, clinicians use their own medical knowledge and judgment to do assessments, and if we have concerns, we do research or seek consultation, whether we are dealing with MAID or any other clinical situation. This is standard medical practice and should not be part of the legislation.
My fifth recommendation has to do with the importance of informed consent where all options are presented. People seeking MAID should be informed of all of the options available to them to treat their conditions and circumstances. Putting this in the Criminal Code, with the threat of sanction that this implies, is unnecessary and will be a deterrent to potential assessors and providers and, thus, to access. It is the person’s decision whether or not to seek MAID and to state they have given serious consideration to other means to relieve their suffering. Medical practitioners should not, in legislation, be required to judge whether this is true. This is paternalistic and demeaning to the person and requires of the practitioners something they cannot possibly know with certainty.
Sixth, remove the 90-day mandatory assessment period. Removing the 10-day mandatory reflection period for patients whose deaths are reasonably foreseeable is an excellent change. Patients, by the time they seek MAID, have already been suffering, and in many cases intolerably, for a very long time. The decision to pursue MAID is a carefully considered one. Forcing patients whose deaths are deemed not reasonably foreseeable to wait an additional 90 days is cruel and inhumane and adds no further protection. The time to complete the assessment process should be a clinical decision relying on the judgment and experience of the individual assessors and providers.
Finally, protect the vulnerable amongst us and respect autonomy. Vulnerable people need to be protected, and this includes people who want MAID but who would be denied MAID under severely restrictive criteria and safeguards. Part of the assessors’ and providers’ responsibility is to assess for the vulnerability of the patient while also respecting the individual’s right to make decisions with which others may not agree.
While I think we can all agree that people with disabilities are not well supported, this is not the legislation to address that lack. Similarly, I think we can all agree that we need more investment in palliative care, end-of-life care, income and social supports for the most disadvantaged amongst us, housing support, day care, et cetera — and again, this is not the legislation to correct those deficiencies.
Here are some patients’ comments, versions of which I hear on a regular basis.
“Oh My God! I’m so glad you called!”
That was to make an appointment for the MAID assessment.
“I will live for that day!”
This person was speaking of the MAID procedure itself.
“This is about quality of life.”
“I feel terror, absolute terror.”
This is how one person spoke of the thought of having to continue to live.
“I have been a nice person. I have had a very good life, but now it’s time to go. Eventually I have to go, right? Why not go with dignity?”
“If I have to get on my knees, which I can’t do, I will beg for this . . . I want it to be quick, and I want it with dignity.”
I hope that the proposed amendments will help ensure that people experiencing intolerable suffering will have greater access to the dignified death that MAID can provide if that is their choice, but I do not have confidence that this is going to be the case. Changes are needed. Thank you for considering my thoughts and recommendations on this very important piece of legislation. A dignified life includes a dignified death.
The Chair: Thank you very much, Dr. Perrot.
We will now go to Professor Donna Stewart, from the Toronto General Hospital at University Health Network and the University of Toronto. She is responsible for research, education, policy and health service delivery for women’s health.
Dr. Donna Stewart, University Professor, University of Toronto, Psychiatrist, University Health Network, Senior Scientist, Toronto General Hospital Research Institute, as an individual: Good afternoon, senators, and thank you for asking me to speak. I’m very impressed by this important work you’re doing. I’m a university professor at University of Toronto and a staff psychiatrist at the University Health Network. I practised as a family doctor in Canada’s Far North before qualifying as a psychiatrist nearly 50 years ago. I specialize in psychiatric consultations on medically and surgically ill individuals who also have psychological difficulties. I held the world’s first Chair in Women’s Health from 1995 to 2014. I’m a member of the Canadian Psychiatric Association, the Canadian Association of MAID Assessors and Providers, and the University of Toronto Joint Centre for Bioethics.
I teach in the Faculty of Medicine and conduct research, including research on MAID. I have over 400 peer-reviewed scientific papers and four books published. In 2014, I became a member of the Order of Canada.
I’m speaking to you today in my personal capacity. I will speak today on six topics related to Bill C-7 and conclude that it’s my considered opinion that individuals who suffer solely from mental disorders and meet the criteria of Bill C-7 deserve a fair assessment for MAID. To deny this MAID assessment, despite the likelihood that few will qualify, is discriminatory and appears to contravene section 15 of the Charter.
My following comments relate to topics that have been raised as objections to the inclusion of MAID solely for individuals with mental disorders.
First is the issue of physical versus mental disorders. This is a false distinction in the concept of illness as there is great overlap between these two conditions. Many physically ill individuals suffer from sadness and depression. The brain, after all, is a physical organ, and research shows abnormal functioning in most mental illnesses. Depression and other mental illnesses may cause physical symptoms and conditions such as heart disease. Physically and mentally ill individuals alike suffer from grievous, intractable and intolerable suffering.
Next is the topic of incurable and irremediable conditions. Most doctors, including psychiatrists, are optimistic. This serves patients and doctors well. After all, who would want a pessimistic doctor? And hopefulness is in itself therapeutic. However, policy must be based on reality, not dreams, and only a self-delusional doctor thinks he or she can cure everyone. The best available evidence shows that treatment outcomes for dementia are abysmal. For depression, even after four switches of antidepressants, only 67% of nearly 4,000 U.S. patients reached remission. There are many other studies.
In fairness, additional treatment with psychotherapy, electroconvulsive or shock therapy, newer neurostimulation techniques such as repetitive transcranial magnetic stimulation, ketamine or hallucinogens may achieve slightly better results in highly selected individuals. Long-term outcomes in a variety of other mental disorders, such as schizophrenia, eating disorders and neuropsychiatric disorders, show a substantial number are irremediable. A review of irremediable psychiatric suffering in the context of physician-assisted death explores this issue in greater detail, and is in the brief I have submitted. You will see the references for these.
Number 3 is capacity and competency assessments. All psychiatrists are taught during their training to assess capacity and determine whether psychopathology or external factors affect this. I have taught this for nearly 50 years. Capacity assessment is needed to obtain consent or refusal for psychiatric treatment for medically ill patients who may refuse life-saving treatments; who demand discontinuation of life-preserving therapies; want to leave hospital against medical advice; activate a power-of-attorney or substitute decision maker; write a will or agree to donate a vital organ for transplantation. Doctors do this all the time. In case of doubt about capacity, there are a variety of evidence-based assessment tools that could be helpful.
One study found excellent agreement between psychiatrists for capacity assessments on the same interview. All psychiatrists should be able to do a capacity assessment, and most do so on a regular basis. I understand that family doctors also receive training in capacity assessment.
Number 4 is suicidality. I’m going to deal with this briefly because it will come up more, I’m sure, during the question period, but let me comment that jurisdictions that permit physician-assisted death from mental disorders — for example, Belgium, Netherlands and Switzerland — all have active suicide prevention programs, show no increase in national suicide rates and provide safeguards, which I will discuss later.
Number 5 is my clinical experience and research. I have conducted MAID assessments for approximately 200 patients, primarily at University Health Network but also a few in the community. Several of these individuals have had mental disorders, usually depression, in addition to a life-threatening physical illness. The challenge is to determine whether or not depression motivates requests for MAID, and this determination is usually not difficult.
I have also been asked to assess three individuals seeking physician-assisted death in Switzerland solely for a mental disorder. None was eligible, in my opinion. However, for two of these patients I was able to point out gaps in their treatments that were available to them and which they were willing to pursue. I have also seen a tiny number of patients who would likely qualify for MAID, if they applied, after rigorous comprehensive assessment and with safeguards, which I’ll describe below.
It has been claimed by some MAID opponents that burnout and depression will increase in physicians and nurses engaged in MAID. My research study of 131 MAID assessors and providers from across Canada showed higher levels of resilience than a national study of U.S. physicians. Moreover, Canadian physicians and nurse practitioners engaged in MAID showed high levels of protective factors such as satisfaction in providing compassionate care, relief of suffering, enhancing patient autonomy, professionally satisfying work and feelings of honour and privilege in providing MAID.
Number 6, now I want to briefly speak about safeguards. It’s my opinion that additional safeguards are required for individuals seeking MAID solely for mental disorder. These should include, in my opinion, criteria for comprehensive assessment that includes duration, severity, adequate treatment history, a sustained and well-considered wish for MAID and consultation with treatment teams and significant others.
I also think that one assessor should be a psychiatrist experienced in the evidence-based treatment for the specific mental disorder. Consideration should also be given to creating a small virtual panel that could prospectively examine documentation and interview the patient to prevent potential abuses. We can talk more about this during the question period.
In conclusion, although MAID solely for mental disorders will require complex considerations, as I’ve indicated above. These are not insurmountable. Equitable access to clinical services is essential to ensure that individuals do not seek MAID out of a lack of available treatment or supports.
In brief, individuals with mental disorders or illnesses should not be discriminated against solely on the basis of their disability and should have the same options available with respect to MAID as all other individuals.
Thank you so much for your attention.
The Chair: Thank you very much, Professor Stewart.
Our next witness is Dr. Gary Chaimowitz, chair of the Canadian Psychiatric Association task force on MAID, Professor of Psychiatry, Department of Psychiatry and Behavioural Neurosciences at McMaster University. He has co-authored the position statement of the Canadian Psychiatric Association on MAID. Please proceed, doctor.
Dr. Gary A. Chaimowitz, Professor of Psychiatry, Department of Psychiatry and Behavioural Neurosciences, McMaster University, as an individual: Madam Chair, honourable senators, good afternoon. Thank you very much for giving me the opportunity to present to you today. I appreciate this important yet difficult task before you. By way of introduction, I’m a forensic psychiatrist at McMaster University and St. Joseph’s Healthcare in Hamilton, but today I’m appearing as an individual. The opinions that I express are my own and do not reflect the views of the various organizations that I’m a part of.
I offer my brief comments in the hope they will assist you as you set out to craft the law. Here are a few key points as general overarching principles that I believe are applicable here. I do recognize that MAID, and especially MAID where mental disorder is the sole underlying medical condition, is controversial, with fierce views expressed on all sides. I want to acknowledge the passions and views of people who have taken the time to weigh in on this important issue.
The decisions about MAID in its various complexities reflect the will of the Canadian people. Physicians, of course, will operate within the law despite personal opinion. However, they are key players and, in my view, have an informed opinion to add to the debate.
This has been a difficult, complex issue for all Canadians. For physicians who have dedicated themselves to save lives, this can be a hard place. Physicians promise to do no harm. But what is the definition of harm from the perspective of the person who is suffering? Is it harmful not to assist? All of my colleagues on both sides of the discussion want the best for the patients we serve, but who decides and who defines best, and at what point do we as a society determine what is best for any patient over and above what they determine to be best for themselves? Any reader of the literature on MAID reflects my experience of MAID assessors and providers, and that is of physicians who feel the weight of their responsibility and weigh the issues carefully. These caring, thoughtful health care providers look beyond symptoms and diagnosis to the individual, their needs, their experience and their wants.
Canadian society has evolved, and paternalistic medicine has become more, but not yet, egalitarian. In my career, I’ve experienced how we’ve gone from not telling individuals about their diagnosis and treating women as unable to hold difficult news, to an evolved system of palliative care providing comfort, dignity and whole-person care, where it is acceptable to withhold life-giving treatment; to a system where consent and capacity to treatment have been accepted and refined and where women can control what happens to their bodies.
Hence, it is in the human rights domain that I place our discussion about MAID and especially where mental disorder is the sole underlying medical condition. My life, my choices; your life, your choices. We as Canadians have moved beyond excluding groups or classes of people from choice about their lives and their deaths. That is, except, of course, for those people who have a mental disorder. So are we prepared to declare that those with mental illnesses are not protected by the selfsame human rights that the rest of us enjoy and do not have the same rights as a person with another, perhaps less stigmatized, illness? We continue to make decisions for people living with mental illness. Perhaps we should be asking them the same questions and giving them the same choices as everybody else.
For the second part of my comments, I want to make three points. First — and you’ve heard this — psychiatric diagnoses are real medical conditions. We need to recognize the complexity of their illness and the need for ongoing research to better understand illnesses. As with cancer, research is resulting in changes at a great rate, but it’s not going to change the suffering of those who are in the moment and for whom research and new developments are not coming fast enough.
Patients with mental disorders are not the other; they are us. They are our mothers, they’re our fathers, our sons and our daughters, our friends and our colleagues. Depression and its iteration have porous edges, touching on times where life brings sadness and despair. Major depressive disorder is distinct, our treatments reasonably good but imperfect. More than 10% of people with depression are considered treatment-resistant to an array of available treatments. Depression not responsive to treatment, unfortunately, may be debilitating, devastating, grievous and irremediable. So, too, a psychotic disorder such as schizophrenia. When, occasionally, treatment is ineffective, these Canadians suffer unremitting psychological pain.
One of the elements of psychiatric disorders is that during acute phases of illness we find that cognition can be negatively affected and people may lose the ability to make rational decisions. For these reasons, we have laws to define capacity to make treatment decisions. There is a deep literature on capacity, competence and consent, and our laws and our case law provide safeguards that are embedded into and form a major part of psychiatric practice. To obtain consent for treatment, the consenter needs to have intact decisional capacity, in which psychiatrists are trained and have highly developed skills, and enact these skills regularly. The supply is to treatment capacity to accept or refuse treatment, hence someone with a mental disorder who is requesting MAID must have their decisional capacity assessed. In my view, psychiatrists are uniquely qualified to do so.
These significant decisional safeguards must be in place in the event that MAID — where mental disorder is the sole underlying medical condition — is supported. Probably the toughest issue is the issue of suicide and its relationship to MAID. It is safe to say that we’ve all likely been touched directly or indirectly by suicide. The question is: Will MAID allow suicidal Canadians to access MAID for the purposes of physician-aided suicide? Will therapeutic nihilism insinuate itself into medical practice and will MAID become the easier avenue for patients who wish to end their lives? Tragically, 4,000 Canadians take their lives every year. The despair and distress they must have felt is unimaginable and the impact on family and friends equally so. Sadly, too, is that notwithstanding all our efforts to end suicide, we’ve really not been able to reduce our national suicide rate from about 10 per 100,000 people per year.
To put this in another context, in the Netherlands — long down the MAID road with a suicide rate almost identical to Canada — in 2018, there were about 70 Dutch citizens who chose MAID for psychiatric reasons. MAID did not result in a rush to death, but it may have allowed some people not to be alone in death to end unbearable pain. Population adjusted, that would be about 140 Canadians whose treatment-capable decision was that, because of their psychiatric illness, their suffering was unbearable. That would be our equivalent. I stress that this is not an invitation to mass suicide but rather the acceptance that people with mental disorder have the right to informed, competent choice.
One of the potential impacts of allowing MAID where mental disorder is the sole underlying medical condition is it may encourage suicidal people, who would not have proceeded to take their lives by suicide, to request MAID. However, my view is that if you’re suffering in silence in your prison of despair and shame, and you get to the point where you consider MAID, in order to access MAID you would then have to identify yourself to the medical community. Paradoxically, for the first time you may have access to treatments you so desperately need. Shame and access to care are some of the many barriers to care.
The Chair: Doctor, may I please ask you to wrap up?
Dr. Chaimowitz: Yes, thank you. Because there is treatment available, hope will emerge. We have so much work to do in improving mental health and social services and supporting access to care. This requires our urgent attention. MAID is not the first option. However, to deny a portion of our population access to appropriately assessed and considered MAID, solely because they have a mental illness, is not equitable or fair. Thank you very much.
The Chair: Thank you very much. We’ll now go on to hear from Trevor Hurwitz, Doctor and Clinical Professor at the Department of Psychiatry, University of British Columbia. His research is in euthanasia and mental illness.
Dr. Trevor A. Hurwitz, Doctor and Clinical Professor, Department of Psychiatry, University of British Columbia: Thank you. My research is not in euthanasia, but I think I have something to add to the discussion.
I would like to thank the Senate for inviting me to speak. I consider this an honour and a privilege. These are my own views and do not represent the university or hospital where I work. I want to focus on one main issue: that of grievous and irremediable medical conditions and the understanding of unbearable suffering, and what this means for Bill C-7.
Someone who wants to die and has a lethal plan and has an active suicidal ideation is mentally ill. The mental illness in question is almost always a severe depression. Patients with medical illnesses are suffering and dying. Euthanasia is a request for peaceful but premature end. Mentally ill patients are suffering, not dying. They are suicidal to escape severe and chronic psychological suffering. The patient has a clear suicidal plan, a lethal cocktail of medications, and they want a serene and dignified death. Such a request is never contemplated in an acute setting. At first presentation, no psychiatrist would ever consider a patient’s suicidal ideation as understandable, sympathize with the patient and send them on their way to die by their own hand. Worse, no psychiatrist would consider helping the patient implement their wish. The patient is acutely mentally ill. Committal and involuntary treatment should follow if needed to save the patient’s life. Beneficence to do good trumps autonomy, the right to self-determination, every single time.
Years later, the same patient remains chronically depressed and suffering from an unbearable psychological pain. The only respite from their perspective seems to be death. They believe there is no further help available and the treatment that they want is death. The patient is not in crisis. They present the request as the outcome of well-considered introspection after years of suffering. Suicide is now the treatment of choice. But what if we could terminate this psychological pain?
In B.C., I think we have the only empirical evidence. This comes from our work with limbic surgery for depression. In 1998, we started to offer brain surgery for treatment-resistant depression known as bilateral anterior capsulotomy. Here, two neurological cables are severed, one on each side of the brain. The most striking effect of surgery is the repetitive effect on suicidality because of a reduction in sadness. Patients have to have been ill for more than five years to be considered.
After surgery, sadness and suicidality vanish instantaneously. I have a video that is three and a half minutes — it is in the clerk’s hands — and if you want to see it, you will need to ask for permission for more time. The effect that you will see is striking and durable. It is worthwhile to reflect on what has transpired here. There have been no changes in the circumstances or medication, but the patient’s thinking is altered instantly. Very importantly, surgery does not interfere with computational capacities. Pathological sadness has been taken out of the cognitive equation. Sadness is the very illness itself; it was the cause of suicidal ideation in the acute setting and remains the cause in the chronic setting. To avoid death is normal and rational; to want death is irrational. Rationality is instantly restored when the illness-based sadness is removed.
Chronicity is not what is making these patients want euthanasia. The brain illness that was present at the start is still present years later. These patients need protection and treatment, not collusion with the mental illness. The implication of the surgery’s effect is unequivocal. Depressive illness is a medical disease of the brain; a biological disturbance in a brain network. When pathologically autonomous, as in depressive illness, inexplicable, intense sadness surfaces, pathologically valencing ideas and problem-solving options, such that suicide appears to be the only reasonable solution. Cut the cables, and sadness and suicidal ideation vanish.
Limbic surgery highlights two important issues: First, the critical role of emotions in decision making, and mental illness that drives patients to suicide is not irremediable. Psychiatry has many treatment options. How successful are we? In 22 years that I have run this program, only 12 patients in B.C. have had surgery; we have a population of 5 million people. Our experience also has direct relevance to other causes of severe psychological suffering. There is suffering caused by severe psychosocial privation. Here, the unbearable suffering is better termed demoralization and it should not be medicalized. We don’t treat through medication or offering euthanasia. We advocate for social destigmatization and access to missing supports and services. Demoralization should never be grounds for euthanasia. Patients need relief from their psychosocial privation, not the option of state-sanctioned and provided death.
Second is the unbearable suffering from severe pain or physical disability. There are many pitfalls here. The case of E.F., with which you are familiar, is very illustrative. She had physical disabilities as a manifestation of emotional pain converted into physical pain and physical incapacity, a condition known as conversion disorder. She underwent euthanasia in B.C. in 2016 without being advised of or given the option of appropriate psychiatric care.
Last, there are two insights from the surgical treatment of treatment-resistant depression. First, unbearable suffering, regardless of cause, distorts thinking and interferes with valid capacity. The future looks hopeless, treatment is worthless and death the only escape. Second, in all of these cases, beneficence must again trump patient autonomy.
Thank you for your attention and this opportunity.
The Chair: Thank you very much.
Senators, the video will be with the clerk. If you wish to see it, you can let the clerk know. Thank you very much, Dr. Hurwitz.
Now we have Dr. John Maher, Psychiatrist, Barrie Assertive Community Treatment Team; President, OAAF; Editor-in-Chief, Journal of Ethics in Mental Health. His academic work specializes in medical ethics with a focus on competency issues.
Dr. John Maher, Psychiatrist, Barrie Assertive Community Treatment Team; President, OAAF; Editor-in-Chief, Journal of Ethics in Mental Health, as an individual: Thank you very much. Madam Chair and honourable senators, I’m grateful for the invitation.
Canada offers MAID but not universal palliative care, disability supports or mental health care. Do we congratulate ourselves for our compassion in giving people an easier way to die while depriving them of the resources they need to live? How can this legislation be justified while the health rights of Canadians are ignored and unprotected? Is this what free choice looks like in Canada?
I studied for nine years to become a medical ethicist and nine more to become a psychiatrist. I have been a doctor for 26 years. I worked for six years in childhood cancer and four years in adult palliative care. I have helped hundreds of people die and I know what good palliative care is. For the past 18 years, I have sub-specialized within psychiatry and have treated only people with the most severe and persistent mental illness; 150 of the 5,000 psychiatrists in Canada do this type of work. I am currently president of the association representing the 80 ACT teams in Ontario who care for the sickest and most vulnerable. As an association, we oppose MAID for mental illness.
Clinical relationships are already being profoundly undermined. My patients are asking: “Why try to recover when MAID is coming and I will be able to choose death?” Some of my patients keep asking for MAID while they are getting better but can’t recognize that yet. Some say MAID is morally acceptable because the law and a doctor says it is. It comes with all the idealized trappings of medical comfort along with the relief of guilt that often comes with suicide.
Those who claim that suicide is impulsive and violent, while MAID is well thought out, peaceful and dignified, are arbitrarily redefining what suicide is outside of a terminal context. Social engineering always begins with language engineering. Suicide is taking steps to cause your own death, whatever the steps.
Tragically, I have had patients who have killed themselves in well thought out and peaceful ways; 75% of people thoughtfully plan their own suicides. The characterization of all suicides as compelled, impulsive and violent is factually wrong, perpetuates media stereotypes and is stigmatizing. To be clear, the American Association of Suicidology does not support the claim that MAID is not suicide except in the context of terminal illness.
Terminal illness means “sure death and no hope.” Mental illness means “no death and sustaining hope.” Those are profoundly different states of being. Saying the two are the same for the purposes of assisted death is twisting logic in the service of ideology. With the “reasonably foreseeable death” criterion removed, the use of the irremediability criterion is being changed in practice from “definitely irremediable” to “possibly irremediable.” Is “possibly” good enough when what is at stake is not six months but 60 years? The applicable moral maxim is this: When in doubt, don’t do it.
Determining whether a particular psychiatric disease is irremediable is impossible; people recover after 2 years and after 15 years. I have repeatedly psychiatrists refer patients to me where I am told they will never get better; yet they have all improved symptom control and reduced suffering when they finally get intensive care. Inadequate care causes remediable illnesses to appear irremediable. If symptoms cannot be fully controlled with good treatment, suffering can always be reduced with natural adaptations, learned coping skills, the alleviation of poverty and loneliness, and the comfort of meaningful relationships. Shared suffering is reduced suffering.
Of the Canadians who attempt suicide, only 23% will try again and only 7% complete suicide. Most suicidal thinking is ambivalent. We must not have legislation that will lead people to death who otherwise would have healed or coped. Offering an easier path to suicide is an ethically indefensible inducement. You can’t offer a sanitized gun in a white coat. Opportunity begets action.
Offering suicide because effective treatment is refused or unavailable is also indefensible. Death versus no treatment is not an autonomous choice, and only one in three get help as it is.
By analogy, psychiatric outpatient care is like this for thousands of people in Ontario. Say you are in a car accident, have quadriplegia and you are left in bed for years. You are fed, receive painkillers sometimes but have no rehab, no aids to live and no social connection. Is it any surprise that you might be suicidal?
Quality-of-life research puts the impact of schizophrenia on exact par with quadriplegia. It’s well within our power to help, but we need resources. As we speak, 6,000 people in Ontario are waiting up to five years to get the specialty care that my team provides. In the meantime, they are in and out of hospital, getting bandaids on deep wounds. These are degenerative diseases. It’s like being diagnosed with a growing brain tumour and having to wait years for chemo while you get sicker. This is systematic and systemic stigmatization and discrimination.
Most Canadians are unaware of this artificially pressured legislative push, and only about 10% of psychiatrists have weighed in. My colleagues are shocked to hear death could be offered without the requirement that at least all standard treatments have been tried. They have absolutely no doubt that patients who would have gotten better will die if mental illness is not excluded from Bill C-7. Research shows that if 100 psychiatrists assess a person with uncertain decisional capacity, 35 will have one opinion and 65 will have another. Different psychiatrists have different skill sets and levels of experiences. They also have biases like everyone else. As in the Benelux countries, if legalized here, there will be psychiatrists who become the “super-suicide helpers.” Patients will doctor-shop until dead.
When the parents of a young woman recently asked me if I was going to help their daughter get better or kill her, the moral perversion of all of this could not have been clearer to me. Senators, please, in your wisdom, be steadfast in protecting people with mental illness who need help living, not dying — my patients among them.
The Chair: We will now go to Dr. Mark Sinyor for his testimony. He deals with mood disorder and, among other things, speaks to the lack of standards in evidence regarding MAID for mental illness.
Dr. Mark Sinyor, Associate Professor; Psychiatrist, University of Toronto, Sunnybrook Health Sciences Centre, as an individual: Good afternoon, senators. It’s an honour to be here today. I am presenting today as an individual; these opinions are my own. However, I’m an associate professor of psychiatry at the U of T and a psychiatrist who specializes in the treatment of adults with complex mood and anxiety disorders. My research is focused on suicide prevention and, in particular, how media reporting and messaging across society influence suicide. I am a recent former vice-president of the board of the Canadian Association for Suicide Prevention; lead author on the Media Guidelines for Reporting on Suicide, Canadian guidelines for responsible media reporting about suicide; and a steering group member of the International COVID-19 Suicide Prevention Research Collaboration.
I should note that I am not involved in MAID assessment or provision. I am also not a conscientious objector to MAID and have no professional concerns about its use when provided at the end of life, as articulated in the prior iteration of the legislation.
To be transparent, my professional agenda, both in general and in these deliberations, is to do the best to contribute to a Canadian society with fewer suicides. It is through that lens that I will raise concerns during this hearing.
Suicide really ought to be at the forefront of our discussion today. This is because legalized medical assistance in dying at the end of life, which arose following the Carter case, really has minimal overlap with suicide. MAID for physical illness, which was the subject of the Truchon and Gladu case, had some potential overlap with suicide. However, MAID for mental illness might be difficult or even impossible to reliably differentiate from suicide, both in individuals and in public perception. Thus we have a need for much greater attention to suicide in these deliberations.
It is actually inappropriate to even call this “medical assistance in dying,” as we are no longer assisting in a death process that is already occurring but are rather inducing death many years or decades before its natural occurrence as a means of coping with emotional suffering, which is, in essence, the definition of suicide. Here, we are really speaking about physician-assisted or, even more correctly, induced death.
I have had the opportunity to watch some of the prior testimony and will note that it has been a good encapsulation of the complex philosophical arguments on both sides. Like Doctors Gaind and Rajji, I share concerns about the lack of clear evidence regarding what constitutes an irremediable mental illness and whether such a potential phenomenon can reliably be predicted by psychiatrists. Evidence from my own work and that of international colleagues has also shown that a public emphasis on death as a useful coping strategy in response to emotional suffering often leads to more suicides across a population, while an emphasis on hope, survival and resilience may lower suicides.
It is plainly true that the Canadian government’s endorsement of death for mental illness would be diametrically opposed to the evidence-based messages we in the suicide-prevention community are trying to promulgate. According to previous survey data, these are similar concerns that are shared by the majority of psychiatrists in Canada who oppose physician-induced death as an intervention for mental illness.
I have also listened to forceful and earnest articulation of the minority psychiatric view, as you’ve heard here this afternoon. In this situation, where we have hypotheses in different directions, who is correct? The honest answer is that we do not know with any reasonable certainly. We have a mechanism for resolving competing hypotheses in science, and that is rigorous scientific study and data. Unfortunately, it is my duty to report that those who are advocating for this legislative change have failed to conduct the research and/or provide the evidence necessary to carefully support their claims.
I will explain why this is a problem by using the analogy of a COVID-19 vaccine. Vaccines had already been developed by early 2020. The first Pfizer trial began in April of last year, and at that stage, most of us would probably have agreed that it was a good idea in principle to inoculate the population; yet we did not do so until late December. In the meantime, millions have died worldwide. Why has there not been an outcry by scientists and bioethicists? The answer is because it would have been wrong to provide a vaccine without first rigorously testing its safety and effectiveness across the population. Researchers had to characterize COVID-19’s effects in the absence of a vaccine, had to quantify how the vaccination mitigated those efforts and had to quantify carefully all of the unexpected potential harms and demonstrate that they did not outweigh benefits.
This is the established process when proposing new medical interventions. What would that process look like for establishing the safety, if it’s possible, of physician-induced death for mental illness? First, the field would need to develop and validate instruments to identify what constitutes the threshold for intolerable suffering. Second, studies would need to be conducted to determine whether patients receiving a wide range of psychiatric treatments continue to experience intolerable suffering thereafter.
Note that this has never actually been studied; prior research has only examined ongoing symptoms and functional impairments, which might be related but are not the same thing.
Third, if that phenomenon is quantified, standardized processes must be proposed for predicting who among psychiatric patients will continue to experience intolerable suffering.
Fourth, studies must be conducted to estimate how often those predictions are wrong — so-called false positive cases.
And fifth, there must be a host of studies examining other ancillary harms, such as suicide contagion, to ensure that they do not outweigh the benefits. I wish that data were in existence as then we could have an informed conversation about how to move forward. Unfortunately, this inchoate and nascent area of research has been presented to you as one where these answers are already well understood and resolved. They are not.
We can all have opinions, but as a country we must support science over rhetoric no matter how cleverly or vehemently delivered. If physician-induced death becomes legally available and accessible to Canadians with sole mental illness, there is a very high likelihood that many individuals whose conditions could be remediated, as you heard from the last two speakers, with outstanding mental health care will be deemed to have irremediable illness as a result of an assessment error and flaws in our system of provision of mental health care. They will die unnecessarily and prematurely as a result. The only question is how many, and sadly no one has done the work to answer that question and inform this discussion.
As a result, quite ironically, if this legislative change moves forward, it will result in a large number of premature deaths, the outcome which the original Carter ruling was explicitly rendered to prevent. For these reasons, I respectfully ask the senators to suspend any further legislative changes until such time as adequate study by unbiased sources can be conducted to inform this discussion according to the usual medical evidentiary standards.
Thank you, and wishing health and well-being to all during the pandemic.
The Chair: And to you as well, Dr. Sinyor. Thank you.
Our next witness is Dr. Karine J. Igartua, President, Quebec Psychiatric Association. She is an associate professor at the Department of Psychology at McGill University and a co-founder and co-director of the McGill University Sexual Identity Centre, which has been offering psychiatry consultations and psychotherapy to sexual minorities since 1999.
[Translation]
Dre Karine J. Igartua, présidente, Association des médecins psychiatres du Québec: Good afternoon, Madam Chair, and thank you for having me.
I am here as the president of the Association des médecins psychiatres du Québec, or AMPQ, which represents all of the psychiatrists working in Quebec’s public system. The day after Justice Baudouin’s decision, the Collège des médecins du Québec instructed the AMPQ to provide guidance on MAID eligibility criteria for patients with mental disorders.
Following a survey of our 1,250 members, an expert panel—made up of psychiatrists, a representative for families and a patient partner—submitted a discussion paper on MAID after 11 months of work. The committee should have already received the report in both official languages.
[English]
Our association strongly believes that excluding patients with mental illness from accessing MAID is discriminatory and would be nothing less than systemic stigmatization. It stems from myths and unconscious biases about mental illnesses such as: one, that the prognosis of mental illnesses are too variable to ever be deemed incurable; two, that the suffering is somehow less legitimate than that which is related to physical illnesses; three, that the desire to die in a patient with mental illness must somehow always be a symptom of that illness; and four, that people with mental illnesses lack agency or decisional capacity necessary to make a MAID request.
Let me briefly address these myths and then the safeguards we suggest be put in place for MAID for mental illness assessments.
Let’s first look at how we deem illnesses incurable. As with other chronic illnesses, the prognosis of mental illness is variable and is not diagnosis dependent. For example, some depressive disorders will respond to the first trial of an antidepressant and others will require multiple different treatment modalities to control symptoms, and yet others will remain refractory to all known treatments.
This can be said of eating disorders, anxiety disorders and psychotic disorders, but it can also be said of breast cancer, inflammatory bowel disease or epilepsy.
In psychiatry, just as in other branches of medicine, the longer the disorder, the more severe the relapses, the more chronic the impairment and the poorer the prognosis is. Outside of end-of-life situations, incurable can only be determined over time by trial and failure of multiple treatments. Drug trials take weeks to months and psychotherapy takes months to years. Patients with mental illnesses who would be eligible for MAID would have had years of living with the illness and multiple treatment trials.
Suffering is assessed by taking into account persistent symptoms and functional impairment along with patient values, personality traits, their coping mechanisms, psychosocial situation, physical health as well as the meaning that they give to the situation.
When all the issues are looked at, suffering can sometimes be alleviated, but when it cannot, we then need to consider whether the suffering is intolerable.
What about suicidality? It is true that suicidal thoughts sometimes arise as a symptom of certain mental illnesses, particularly depressive disorders and borderline personality disorder. However, it is not a criterion for other mental illnesses. So it is wrong to assume that all wishes to die in people with mental illness are simply a manifestation of the illness.
The question then really becomes one of how we distinguish suicidal thinking as a symptom of an illness from a rational request to end suffering. Well, there is the context of the request: Is it being requested in an acute crisis or is it more a calm request in a period of stability? There is the objective pursued by death: Are we trying to avoid being a burden, or are we trying to express anger or desperation? Is it in response to a delusion, or is it to end intolerable suffering?
There is also the interpersonal dimension to the request. Is the patient asking whether there is hope or are they afraid of being abandoned? All these things need to be looked at. Psychiatrists deal with suicidal patients daily and we are the best trained to make the assessments.
As for capacity, some people — but certainly not the majority of people with mental illnesses — do lack the capacity to make a request and to consent for MAID. But the same could be said of people with blue eyes, and yet we would not dream of discriminating against everybody with blue eyes just because some people lack capacity. Psychiatrists are well trained to make capacity assessments, and we do it daily in many different settings, whether it’s capacity to consent to surgery or refuse psychiatric treatment, whether it’s an ability to care for oneself and live independently, mental incapacity for public guardianship or even fitness to carry a firearm.
In fact, even under the current law, patients with both physical and mental illnesses are assessed for capacity in the context of MAID. In addition to cognitive criteria, psychiatrists are used to taking into consideration how emotional states and value systems influence decisional capacity.
The AMPQ is proposing safeguards to be put in place in the case of MAID for mental illness requests. First, we suggest a prolonged assessment process by two psychiatrists with the involvement of the family and the treating team; and second, we suggest a prospective oversight and coordination of MAID requests by a provincial body. This would ensure that no patient or clinician is left on their own to deal with a MAID request and that the assessments would properly take into account all the important elements I have briefly touched upon.
Through our discussion paper, we have shown that psychiatrists can come together and provide a framework for the assessment of MAID requests for mental illness. Nothing substantial will be learned about the prognosis or treatment of mental illness in the next few years that would alter this delicate situation. Therefore, we strongly advocate that the mental illness exclusion be immediately removed from Bill C-7 and, barring that, a sunset clause be added so that the exclusion expires without further legislation needed. The AMPQ has already begun providing training sessions on MAID assessments to our psychiatrists and a national group is working together on providing training modules for the whole country.
Just because it is more complex does not mean we should shy away from doing the right thing. All patients must have the right to self-determination and equal access to care. Let us avoid the trap of systemic discrimination. Our patients face enough stigma already. Thank you.
The Chair: Thank you very much. Now we will go to our last presentation, from Dr. Lisa Richardson.
Dr. Lisa Richardson, Strategic Lead, Centre for Wise Practices in Indigenous Health, Women’s College Hospital, as an individual: Thank you for accommodating me today.
Madam Chair and honourable senators, I speak to you from the traditional territory of the Mississaugas of the Credit, the Haudenosaunee, the Seneca, the Huron and many other people from across Turtle Island, Toronto, where I’m currently located. Meegwetch.
I’m mixed blood Anishinaabe Kwe. My community is known as Shebahonaning, colonially known as Killarney.
I’m an internal medicine specialist. I’m an associate professor and vice-chair in the department of medicine. I’m the strategic lead in Indigenous health for Temerty Faculty of Medicine. I’m the co-chair of the Royal College Indigenous Health Advisory Committee and also a new member of the executive committee of the newly founded National Consortium of Indigenous Medical Education.
I am not a legal scholar. My scholarly focus is on Indigenous health, specifically on medical education and on the recruitment of Indigenous physicians into the workforce, but also a huge component is on the experiences of racism that Indigenous peoples experience in the health care system.
It’s in this capacity that I express my concerns about expanding MAID to include people whose natural death is not reasonably foreseeable. Why is this? This is because Indigenous peoples are not secure in our health system. Racism exists in health care.
Last week, I spent two days listening to statements about the experiences of Indigenous people and the racism that they all had in the health care system. It was a meeting that was convened by the federal government. We spoke to Minister Hajdu, Minister Bennett and Minister Miller. That meeting evolved because of the racism experienced by Joyce Echaquan.
What we know is that Joyce’s experiences in health care are not unique. In fact, we have significant evidence that documents how our people receive a different level of care. For example, we have studies that show Indigenous people with coronary artery disease who meet the criteria for cardiac catheterization are not referred. We have studies that show Indigenous people are not referred for renal transplants. We have public inquiries like that of Brian Sinclair, the First Nations man in Winnipeg who went into an emergency department to have his catheter changed and died of urosepsis, which is an infection due to a urinary tract infection, because people assumed that he was a drunken Indian.
There are so many stories of ongoing mistreatment of our people. My concern with this extended bill is that until we eradicate this racism in our health care system, we will see an unprecedented and disproportionate number of our people affected by it.
I also had the honour and responsibility over a year ago of presenting at the House of Commons Standing Committee on Health about the forced and coerced sterilization of Indigenous women. This is just another example of the racism that exists in our health care system towards Indigenous people.
What was demonstrated in that report of the standing committee — based on the class-action lawsuit filed by Indigenous women who had experienced forced and coerced sterilization, the most recent case being in December 2018 — was that Indigenous women who entered the health care system actually did not give informed consent because often they were either denied access to the information, they were coerced into sterilization or, in the worst-case scenarios, they were not even told that this was being done. Although it’s appalling to imagine that this occurs and that these are members of my profession and of other health care professions who are involved in this racist activity, it is well documented.
In an environment where both systemic and interpersonal racism exists, I don’t trust that Indigenous people will be safe. I don’t trust that anti-Indigenous prejudice and bias will not affect the decision making and counselling about MAID for Indigenous people, no matter how much education is given.
My second point is around the social determinants of health. We know that inequities related to the upstream determinants of colonization, like poverty, food insecurity, inadequate housing and a higher burden of chronic disease, disproportionately affect Indigenous people. These social determinants can lead to enduring and intolerable suffering, but this suffering can be relieved if we address these social determinants.
In my opinion, a bill that does not actually take into account how social inequities disproportionately affect Indigenous peoples is highly problematic.
Lastly, I want to speak to the point around self-determination. I do know that you have consulted with my numerous Indigenous colleagues and heard from them as witnesses. I was not able to join them yesterday. But any legislation related to health care that involves Indigenous peoples must be done in partnership with us. This is in accordance with our Indigenous rights, as well as the United Nations Declaration on the Rights of Indigenous Peoples. There is a need for more meaningful partnership and input from Indigenous peoples — First Nations, Inuit, Métis of different backgrounds and different traditional territories. There is a huge diversity amongst us in terms of our belief systems and our approaches. Unless adequate consultation is done, we are not upholding the right to respect the needs of Indigenous peoples.
Those are my thoughts. I do not have any clear recommendations for you except my cautionary words around the need to eradicate racism in our health care system, which will continue to play out if we expand this bill in the application of MAID to our people. Meegwetch.
The Chair: Thank you very much, Dr. Richardson, for making time available today.
We will now go on to questions, panellists.
[Translation]
Senator Carignan: My question is for Dr. Igartua. You’ve heard what other witnesses have had to say, in particular, the other panels’ views on the mental illness exclusion. Your work was done in Quebec, and a period a reflection was necessary.
If a sunset clause were added regarding the mental illness exclusion, how much time do you think would be needed for the exchange and consideration of ideas to take place, for Quebec to share its insight with the rest of Canada, and for a consensus to emerge on the way forward or the safeguards professional bodies in other provinces should adopt?
Dr. Igartua: I think there already is somewhat of a consensus among those who support moving forward, who truly believe the issue comes down to basic rights and anti-discrimination.
Your question about safeguards is an interesting one. In Quebec, our association opted to recommend that the patient be assessed by two psychiatrists, and I’ll explain why. Under Quebec law, in order to keep someone in hospital against their will or institutionalize them involuntarily, the person has to be assessed by two psychiatrists.
Given the significance of the decision to seek medical assistance in dying, the association felt that the requirement should be no less stringent. As a safeguard, what we are proposing may be more rigorous than what others in the country are suggesting, but that was the rationale behind our recommendation.
The other safeguard we are recommending—prospective oversight—has been suggested by others in the country. The idea is that prospective oversight would serve as an additional safeguard to ensure MAID access is not granted in cases where uncertainty exists.
When there is uncertainty and a consensus cannot be reached regarding the person’s decision-making capacity, suffering or incurability, the request may be denied. It is important, however, to recognize the difference between denying access in a specific case where the criteria cannot be adequately assessed and excluding everyone outright. The AMPQ believes a prospective oversight structure would ensure assessments are conducted appropriately, taking into account all the criteria.
Senator Carignan: Much like professional bodies in Quebec, those elsewhere in the country have examined the issue, so the reflection process is further along than it may seem.
Dr. Igartua: I hope the senators will have a chance to read our report, or at least the executive summary. It’s a meaty document, over 40 pages. Much of the work was done at the behest of the Collège des médecins du Québec. They looked to us for the views of the province’s psychiatrists. I know the Canadian Psychiatric Association is doing similar work. The Canadian Association of MAID Assessors and Providers is also examining the issue. A group of professionals from across the country are currently working together to develop training materials.
To answer your first question, I would prefer that the criterion be removed altogether. If, however, a sunset clause were added, 12 months might be an appropriate amount of time.
Senator Carignan: Thank you.
[English]
Senator Batters: Thank you very much to all of the witnesses. My first question is to Dr. John Maher: Earlier this week at our hearings, we had one witness, who advocated for including mental illness as a sole condition in MAID eligibility, refer to pre-study testimony from Dr. Rajji from CAMH. Dr. Rajji had testified this:
. . . some of the longitudinal studies show that 30% of people go into remission, 30% stay the same and 30% get worse.
But Dr. Maher, for someone advocating for MAID to consider that the 30% of those patients with mental illness who “get worse” equates to those mental illness patients who meet the irremediability requirement for assisted suicide, I think that’s incorrect. Many people with mental illness who get worse also later get better, and I’m privileged to know some of them.
Dr. Maher, could you please tell us more about that and the difficulty in determining the significant hurdle of irremediability in mental illness cases?
Dr. Maher: Certainly. Thank you very much for the question. Let me answer the question by building on what Dr. Igartua just said. She said there was significant consensus in Quebec. Their survey for their report heard from 263 of the 1,300 psychiatrists, and about 40% of those said they would never support MAID in any conditions. Another 40% — I don’t know if it’s the same 40% — said that you can’t determine irremediability for at least 10 years. That’s a long time and this is from a small sample.
The only Canadian sample we have of psychiatrists goes back to 2016, before any of the Canadian psychiatrists had a full sense of what this would look like if fully operationalized. At that point, 75% said no — no MAID for mental illness. So that very significant disagreement within the psychiatric community counts for something, and there is no consensus.
Back to the point of studies that you’re asking about, studies involve a small group of people, over a set time period, with a very specific intervention. It is absolutely impossible to extrapolate from any study data, even long-term prospective data, to the particular individual in front of me. I don’t know whether they’re going to be in the category of people who statistically don’t get better or the category who do.
I’d also refute some of the data that I’ve heard at these hearings. Transcranial magnetic stimulation, or TMS, for example, is a non-invasive procedure. At this point, the latest data is it’s 90% effective for people with treatment-resistant illness. So when I hear something like a sunset clause against a backdrop of treatments improving steadily and against the backdrop of absolute uncertainty and absolute clinical inability in this moment to sort out whether this person will get better — also, we don’t know the duration. We don’t know the time. Time itself can be healing over and above all the other interventions.
Senator Batters: Thank you.
Dr. Maher: When I hear learned psychiatrists like Dr. Stewart say there’s no distinction between mental illness and physical illness, and then go on to describe the overlap between the two as a way of showing the distinction, I put my logic hat on here and I have to express my frank concern with an oft-repeated statement: “We can do capacity assessments; we can sort out people with physical illness who need MAID; therefore we can do it with mental illness.”
In logic 101, you call that a category mistake. It’s focusing on what is the same rather than what is different. Yes, you can have capable people, no matter what their illness, no question.
I’ll use an analogy that’s used when you’re trying to explain why this doesn’t make sense. Say I’ve got a Walmart parking lot and everybody drives in, and my working assumption is they’ve got mobility; they got into the parking lot. And I say, “They can get to the store.” But I’m not taking into account who has a walker, who’s in a wheelchair, who is pregnant and who has impaired mobility. So by focusing on the similarities, when I hear lawyers in particular say, “this is discriminatory to say these people can’t make their own capable decisions,” the discriminatory piece is actually ignoring the differences.
What it amounts to is the privileging of an equity argument over an equality argument, and what is that? Because it’s said over and over here. Equity — we all should have access to MAID. That’s basic playground fairness. Let’s look at the playground. If I have a teacher come out with a bag of candy for all the kids, everybody should get one. That’s fair. That’s an easy sell. But what about the kid who has diabetes? What about the Black girl who’s in the corner who’s afraid to come forward because of the racism that exists in that schoolyard? Equity is access. Equality is actually looking at what matters for a human being to heal, to thrive, to live. Because this is a Charter issue, it frustrates me when I hear lawyers take an equity focus over an equality focus, because that is the legal issue here. That is the legal issue.
The Chair: Thank you.
Senator Plett: Dr. Maher, if I could continue a little bit, and please give me not too long of an answer, because I do have one for Dr. Hurwitz as well. I want to continue along with what Senator Batters raised. Jocelyn Downie and other assisted suicide advocates, including some we heard here today, have suggested that excluding mental illness from this regime is discriminatory, and you have said it isn’t, and thank you for that. Can you explain to me why there is such a strong disagreement amongst psychiatrists on the inclusion of mental illness for assisted suicide? You’ve obviously all taken pretty much the same training, so on and so forth, and yet there’s a distinct difference in opinions. Is there any way of explaining that in a few words?
Dr. Maher: Certainly. The quick answer would be the nature of the work you do, and the degree of clinical experience and acumen you have. And there aren’t a lot of psychiatrists who work in specifically the intensive care field that I do, with wraparound care, who know what’s possible. I worked in outpatient psychiatry. I worked in a personality disorders program. I’ve done all that other psychiatry stuff, but I didn’t know what was involved with good wraparound, supportive care over the long term that is proactive. There are 70% of people who have serious mental illness who don’t take their medications. The majority refuse treatment even when it’s available. A large majority of my patients do not believe they have a mental illness. They are relying on us to help them get well when they can’t do it themselves.
So why is it so different? Some of it, of course, is values. I worked with a psychiatrist colleague, I loved him and he encouraged people to commit suicide if things weren’t too good and then he ultimately killed himself. There was a value piece that drove him. But as we’ve heard, that’s fortunately a rarity.
We are by nature, I think, self-selected as optimistic, hopeful people doing our best to bring comfort. But there’s burnout and psychiatrists who give up. I wouldn’t want to disparage colleagues, but I certainly have colleagues who, when they refer patients, they feel they’ve tried everything and I look at it and I think, wow, there’s a whole lot that hasn’t been tried. That’s true in any area of medicine.
Senator Plett: Thank you. Thank you very much.
Dr. Hurwitz, if I could, please. Given your amazing results in reversing suicidality in patients, can you elaborate on the safeguards that are in place presently in regard to assisted suicide and how that would compare with the safeguards proposed in Bill C-7?
Dr. Hurwitz: Well, I can just tell you about the safeguards we have to get capsulotomy. We have two psychiatrists assess for the fact they have treatment-resistant depression and they have had to undergo all available treatments, including two courses of ECT, all antidepressants, including a monoamine oxidase inhibitor, and they’ve had psychotherapy. So they have to be truly treatment-resistant and they have to be suffering terribly. Once they’ve met two psychiatrists — we send them to two independent psychiatrists to assess they’ve got capacity because our ethics committee was concerned that the suffering would so shape their thinking they would do anything to get relief — then they’re going to the neurosurgeon. Then we send reports to our lawyer. The lawyer meets with the patient. Then that committee gets together, and the committee decides those individuals are then eligible for capsulotomy.
So because of those stringent criteria, we have had 12 patients in 22 years who have come through for treatment-resistant, unbearable suffering. If 10% of the population have depression, that would be 500,000; and if 10% are treatment-resistant, we should have had 50,000. And 50,000 people have not come our way because our treatments are very successful to stop unbearable suffering. When I see the safeguards currently in place, they don’t even come close to the safeguards that we have in place to do a procedure that would save a life compared to C-7 that has safeguards that will take a life.
Senator Plett: Thank you very much.
Senator Woo: Thank you to all the witnesses. I’d like to pick up on the question of a sunset clause for patients who have mental illness as the sole underlying condition and direct this question principally to Dr. Igartua. I want to ask about the logic of her proposal to have a sunset clause of, say, one year, for example. I also want to ask about extending the logic.
The first part of the question is: How would she justify the one year if it were not for her prior belief that psychiatrists already have all the tools and ability to provide capacity assessment? In essence, what I’m trying to ask is: Why would we be setting an arbitrary deadline if, in fact, we do not yet know whether psychiatrists do have those tools and can come up with the solutions within a year? That doesn’t seem to me to be a scientific approach to solving a problem. It’s not dissimilar, of course, to the point that Dr. Sinyor made, I believe, about the scientific method in coming to conclusions about how we deal with complicated cases.
Then my secondary question is to extend the logic of your proposal to have a prospective review panel, I guess is the way to put it — again, for complicated cases — as a kind of safeguard and a backstop. That seems to make sense to me. But if we were to extend that logic, why would we not also have such a mechanism for all patients who request MAID, particularly now that we seem to be on the road to including patients whose death is not reasonably foreseeable? It would seem that same logic applies, unless you feel that those cases outside of mental health are not more complicated than patients whose death is reasonably foreseeable.
Dr. Sinyor may want to jump in on this as well if there’s time, but can we start first with Dr. Igartua? Thank you.
Dr. Igartua: Thank you for the question. I heard three parts to your question. I’ll try to answer all three.
First, to the question of scientific method and data, I think we need to realize that the reason there’s so much polarization is that this is not a data-driven question; this is an ethical question. Dr. Maher mentioned it earlier as well. This is much a question of values. So in terms of why there’s a divide, that is the reason.
I also want to bring up that the divide is not as extensive as Dr. Maher might think in Quebec, because not only did we have the poll of our members, but we also presented it in general assembly, we’ve also given webinars, members have had multiple options to come in and talk to us, and we have had very little pushback. In fact, I’ve received one letter with concerns and many letters saying thank you for doing this and taking leadership. That’s the scientific method part of your question.
On the one-year part of your question, there are two things. On the one hand, yes, we already have the training and we already know how to do this. The reason for keeping the one year is to allow the structure that we need to put in place — this prospective survey, the organization that can be a prospective oversight of this; we need to let the provinces put this in place. I agree with you; this should happen ideally for all cases. We did not propose it simply for complex cases for mental illness. We proposed it for all cases of MAID.
But I think that people who have both physical and mental illnesses or, sometimes, people who only have physical illnesses, also have complex situations. As we know, suffering is multimodal. Suffering is not just the symptoms that you have. Suffering is also the meaning that you give to those symptoms, it’s also your psychosocial situations, it’s your values and it’s everything that plays into how you are living in the situation you’re in. Yes, that can be just as complex for physical illnesses as well. To me, the idea of this prospective oversight organization is why I’m saying one year. I’m saying one year to not let this drag out forever, but because I think that in one year the provincial governments should be able to put in place some sort of safeguard in this way.
Senator Woo: Thank you. May we have a comment from Dr. Sinyor if there’s time?
The Chair: Yes.
Dr. Sinyor: I appreciate it, senator. With respect, I would like to say that I fundamentally disagree that the issue is not one of data. When a physician sits with their patient, the first thing they work out is what the risks and benefits of treatments are. We don’t rely on our own personal opinions. We rely on the scientific research evidence. The devil is in the details.
I’ll pick up on something that Dr. Stewart said at the beginning. She was calling attention to the STAR*D trial, I believe, which is the largest and most expensive trial ever conducted in psychiatry with 4,000 patients, and correctly noted that 33% of people at the end of the trial were not in remission; I’ll note that not in remission meaning that they didn’t have a complete absence of symptoms or near complete absence. That was about 1,200 of the 4,000 people.
Notably, 38% of those people never saw a psychiatrist in the trial. It was all done in primary care through an algorithm of taking one, two, three or four medications. So we can get more data. What properly should be done, given that we have a new definition, something called intolerable suffering — which has never been explored ever in a psychiatric trial, to my knowledge — you could take those 1,200 people and ask them, “How many of you are having intolerable suffering?” I don’t know if it would be 50 or 500. Then, give them all of the other treatments we have available that have been discussed: better medications based on pharmacogenetic testing, a wide range of psychotherapeutic options, an exercise regime, light therapy, brain stimulation — I could go on for a long time, but I know that time is limited.
You give them all of that and figure out how many people still have intolerable suffering at the end. That number could be zero, but I’m a scientist, so I go with the data and that number could be 10 or 20. Maybe at the end you end up with a group of people whose suffering is intolerable. Then you must ask the question: If you had all these clever psychiatrists evaluating those 500 people who started off intolerable, could they pick out the 10 at the end who remain intolerable? What would happen if someone did that study, and they identified 50 completely different patients who, by the end of proper mental health treatment, would have been remediated and said these people are eligible for MAID and should receive it? How would we feel as a group?
Again, I’m a scientist and I’m not trying to do beliefs-based care. I want to sit with my patients and talk about the evidence, and the evidence here is flimsy, I have to say and I’m sorry to say. I wish there was better evidence so we could have a more informed discussion.
Lastly, the first rule of medicine is “first, do no harm,” and as a psychiatrist, I cannot provide a treatment, even if it’s made legal, if that treatment is not evidence-based and does not meet the usual standards of being to evaluate, for me and my patients, what the risks and benefits are.
The Chair: Thank you.
Dr. Stewart, I was remiss in not calling on you after Dr. Maher had spoken. Would you like to respond?
Dr. Stewart: I would like to note that there is tremendous overlap between physical and mental illness. Not all of them overlap, but many of them do.
I’d like to mention that doctors are enthusiastic about their own treatments. We hear about deep brain stimulation helped a lot of treatment-resistent depression where 12 patients out of thousands that might have applied actually become eligible to have this treatment and seemed to have good outcomes. I have seen some of the outcomes of patients in Ontario who have had deep brain stimulation, and although they were claimed to be cured by the people who ran the trials, that was not my impression when I saw them a year later. We have to be careful about doctors being overly enthusiastic about the treatments they provide. No one thinks they can cure everyone unless they’re self-deluded.
I’m all for patients getting every kind of treatment they might possibly benefit from, but we must retain some skepticism about some of these treatments that are being proposed based on tiny numbers of highly selected patients. Thank you.
Senator Harder: My question is for Dr. Chaimowitz. The committee has heard several testimonies, both today and earlier, that conflate suicide and medical assistance in dying. In fact, we have some members who feel that way. Can you expand on this distinction and talk about what the government can do to ensure this distinction is clear to all Canadians and that safeguards are in place?
Dr. Chaimowitz: Thank you for the question, senator.
Talking about evidence, we have 4,000 Canadians who, for whatever reason, legally take their lives. These are people who find their illnesses are intolerable. I think we need to shine a light and understand better what is going on with depression, with treatment-resistant schizophrenia and with treatment-resistant mood disorders. This is the national mental health strategy we don’t have. It’s access to care that is lacking in our country.
I think we need to move forward. Something we have already heard today is the question: Why do we treat people with mental disorders differently? If we accept that MAID is a possibility, then those people, who are us, have to have the access that we have. The answer here is education. I take it that many physicians and many Canadians are anxious about MAID for mental illness, but the answer to the question about the way we get things out there is through education and by improving access to care. MAID where mental disorder is the sole underlying condition is not suicide. It is absolutely not.
We were talking about statistics, and I’m anxious about using them, but only 5% of people with mental disorders who apply for MAID in the Netherlands or some of the other Benelux countries get accepted for MAID. There are many things we can do. The whole process that Dr. Hurwitz went through up until surgery is the process we should be going through.
The short answer is education, and we need to make sure we do not discriminate against people. Every Canadian has the right to make their decision. We need to say that, and we need to lead.
Senator Harder: Thank you.
Senator Boyer: Dr. Richardson, thank you. I have two short questions. Bill C-7 requires medical practitioners to inform patients of reasonable and available means to relieve their suffering. This includes pain management, palliative care and sometimes surgery. Do you believe that Indigenous people who have limited access to pain relief treatments and surgical care could have their right to MAID denied or delayed because of the lack of access to these health care options?
Dr. Richardson: There is no question that Indigenous people do not have the same access to palliative care, particularly in remote settings, and the same access to pain relief and to possible surgical options, so I do believe it could either compound the desire to pursue MAID because their suffering has not been alleviated through well-known, evidence-based approaches, or it could be delayed, as you’ve suggested, for the same reason.
Senator Boyer: Thank you, Dr. Richardson. My next question is about the removal of the reasonably foreseeable death clause.
There is a crisis in Canada across Indigenous communities. Many Indigenous people commit or contemplate committing suicide because of the ongoing challenges related to socio-economic inequalities, intergenerational trauma and the previously mentioned lack of culturally appropriate mental health services. Because Bill C-7 repeals the reasonably foreseeable death clause, do you believe that there’s a risk the same factors that lead to an increased suicide rate among Indigenous populations may also contribute — once it becomes widely accessible? What additional safeguards could we put in place for vulnerable populations?
Dr. Richardson: There is no question that that is a concern of mine and of many of my Indigenous colleagues, as well as other Indigenous physicians and health care practitioners. This is why we are concerned about going forward with the bill as it stands without first addressing the major social inequities that exist and contribute to both the higher burden of chronic disease across our people and the higher burden of mental illness that’s related to intergenerational trauma without access to appropriate health care. We know there is a significant gap, which is ongoing, as we’re talking about discrimination on this call. I’m amazed that we don’t accept that we have a second tier of health care for Indigenous peoples in Canada based on all of the evidence. I’m deeply concerned about that in the bill as it stands.
If there were some permission to say that there would be a way to address social determinants of health for a particular individual who is experiencing intolerable suffering before any other action was taken, like removing them from conditions of poverty, giving them access and referrals to appropriate medical services, providing food security — if we addressed all of those issues and a person were still experiencing intolerable suffering, then perhaps this would be an option.
Senator Boyer: Thank you, Dr. Richardson.
Dr. Richardson: Thanks.
The Chair: Thank you to both of you.
Senator Wallin: Dr. Perrot, could you please elaborate for us? Are there some specific changes you would like to see in terms of wording when it comes to this legislation? I think many people will be considering amendments. Do you have any very specific advice on that?
Dr. Perrot: The recommendations at the end of my brief are to remove the concept of reasonably foreseeable natural death altogether; remove the two pathways altogether; allow the waiver of final consent for any patient who has been assessed and approved for MAID with no requirement that a date be set and no requirement that the person must be recognized to be at loss of capacity, again because anyone can lose capacity through a stroke or a ruptured aneurysm or various other things that can happen to interfere with capacity; and remove the exclusion of people whose sole underlying medical condition is mental illness. That can be taken out altogether.
If the two-pathway system is maintained, remove the requirement in the not reasonably foreseeable natural death pathway that a clinician with expertise in the condition be consulted. Because again, we consult as we need to, and that requirement would make it more difficult for patients living in rural and remote areas across the country, and there is already difficult access to appropriate treatments even in tertiary centres like Toronto.
My next piece of advice is to remove the waiting period and the assessment period altogether and allow the assessments to take as much or as little time as necessary for the clinicians to reach a clinical decision about the person’s eligibility. Again, some assessments will take several months. Some of the more complicated situations will take several months of research and consultation with patients, with family members and with their clinicians, and others can be done in a much more rapid period of time. To make everybody suffer for those additional 90 days just does not make sense.
Those were the main suggestions.
Senator Wallin: Thank you. Could you speak briefly to what I think is best described as the Catch-22 in the legislation regarding people with MCI, dementia and Alzheimer’s, where you can’t have your advance request or your advance consent, but once you have a diagnosis, then you are not considered competent or the competency could be challenged?
Dr. Perrot: People with Alzheimer’s and MCI aren’t necessarily lacking capacity to make the decision to receive MAID.
Senator Wallin: Correct.
Dr. Perrot: Many of us have assessed and provided for people who have certain degrees of loss of capacity. It is decisional capacity which is specific to the decision being made, and if a person has the capacity to make the decision to request and receive MAID, then they can still receive MAID even though they may not have capacity, for example, to manage their finances or even to take care of themselves in their own home.
I’m not sure if that answers your question.
Senator Wallin: The next step, then, is the waiver in the final stage.
Dr. Perrot: We are now not really talking about Alzheimer’s and MCI. We are talking more about patients with cancers that might have brain metastases that could result in their imminent loss of capacity. Those patients can be assessed and approved for MAID, and then if they sign a written waiver for final consent, they could still receive their MAID procedure at a later time even if they lost the capacity to give consent.
It’s important to recognize that those patients would be approached by the MAID provider and the MAID providing team, and if they in any way demonstrated that they did not want to proceed with MAID — if there was any kind of opposition or resistance or they expressed that this was not what they wanted and were uncomfortable with it — the provider would not proceed with the procedure. So it is not guaranteed that if someone signed a waiver that they would definitely get it, because the person would still have an opportunity to push that back.
Another aspect would be the advance requests, where somebody with a diagnosis of Alzheimer’s or MCI, or even before a diagnosis, set out very clear criteria in an advance directive: These are the conditions under which I would want to receive medical assisted death, these are the situations under which I would not want to continue to live. I do think it’s possible for advance requests to be carefully written and to be able to be honoured and MAID be provided through the advance request.
Senator Wallin: Thank you.
[Translation]
Senator Dupuis: I think I’ll direct my question to Dr. Stewart.
First, I would like to thank Dr. Chaimowitz for his candid remarks this afternoon, particularly when he said that paternalistic medicine had become more egalitarian. I was a bit surprised to hear psychiatrists say that no data or research on intolerable suffering was available, that what constitutes intolerable suffering is not known and that decisions should be based on science. I’m surprised because physicians in Quebec began examining issues around medical assistance in dying back in 2008 or 2009 and because the Supreme Court addressed intolerable suffering in 2016. That’s why I’m a bit surprised to hear, five years later, that we are dealing with a new definition.
Do we really have to wait until psychiatrists reach a consensus on the importance of researching intolerable suffering? We are talking about a criterion that is recognized by law, in terms of giving a person the ability to choose when their suffering becomes intolerable, the point at which they no longer wish to receive treatment and when the suffering must end.
[English]
Dr. Stewart: The individual decides what is intolerable. This has become a problem, because some psychiatrists feel uncomfortable that mental illness may, in fact, influence this. I would agree that this is a concern, and part of a very comprehensive assessment would be to explore that in more detail. It’s also fair to say that there are, certainly, patients with mental disorders who have intolerable suffering, and even with very comprehensive assessments, it becomes very clear that the assessor would agree with that assessment.
[Translation]
Senator Dupuis: Between you and me, paternalistic medicine has not served women well, mainly because more women than men report experiencing mental health issues. If I understand you correctly, the research can continue—and will continue, in any case—but that is not a reason to prevent people who are capable of making the decision to end their lives from doing so, once their suffering becomes intolerable. Is that correct?
[English]
Dr. Stewart: Yes, you are right. Women do have more mental illness disorders than men, particularly depression and anxiety. The prevalence is about twice during the reproductive years.
I don’t think we are talking about mild cases here. We are talking about severe depression, and I think that individuals can usually give a pretty good estimate of how much they are suffering, and part of the assessment would be to assess how realistic that is.
[Translation]
Senator Dupuis: Thank you.
[English]
Senator Cotter: My question is for Dr. Igartua. We have had and heard some discussions about the value of a sunset clause to buy a little bit of time on the subject of mental illness as a sole underlying condition being placed within the MAID framework. Much of the discussion up until now, as I had understood it, had been to enable the development of training tools and protocols and the like to assist psychiatrists in this work, more broadly even than Quebec, but I have the impression that you are introducing another dimension to this, which is a kind of backstop where the decisions are particularly difficult.
Could you speak to that and whether, in your sense of things, that ought to be a framework that should exist nationally and whether it out to be put in place through regulations or legislation, as opposed to protocols established by medical professionals? Thank you.
Dr. Igartua: Thank you for the question. I am not a lawyer, so in terms of whether this should be put through by regulation versus guidelines, I will refrain from answering that because it’s not within my expertise. But I will say that assessing capacity is something that we are trained to do. It’s part of the Royal College’s acts of things that we need to be competent in. The same is true for assessing suicidality.
I think the basic knowledge is already there, yes, because value systems come into play and because what we want in our MAID assessments is to listen to the patients’ values, not to the values of the assessor.
There is probably room for an improved training program. As I said, we in Quebec have been thinking about this already for a year. Our provincial college asked us to think about this and to think about what was needed, so we are quite advanced in thinking about how this training should happen. I’m sorry. I think I missed part of your question.
Senator Cotter: Is this another layering of protocol that you were describing in what I took to be particularly difficult decisions, where a psychiatrist was doubtful about a person’s qualification for MAID?
Dr. Igartua: On the prospective oversight part, no. The prospective oversight we were proposing was actually for all cases. The reason was to help standardize the process and make sure the assessments are being done with all of the different components that need to be looked at and, also, not to leave any clinician or any patient hanging alone. We are thinking particularly of the outlying regions. It might be easy to find two psychiatrists willing to do MAID assessments in downtown Montreal. It might be harder to do that in Sept-Îles or in Rouyn-Noranda. The advantage of having a provincial body as well is to ensure that access is the same across the territory and is not regionally dependent.
We think the prospective body would be helpful as a protective measure to ensure the assessments are done well, also as an educational measure and, also, as a way of developing a practice community where people are able to bounce ethically difficult cases off each other and get each other’s opinions about things. These are emotionally charged assessments. Even if we do them with all the rigour of our training, as some of the people have said, we are still humans. Even if we are convinced we are making the right decision with the patient, and not for the patient, these decisions can still be emotionally trying. The whole idea of having a group of practice together, where people can bounce ideas off each other, is very useful as well.
Our mandate was really to look at MAID for mental illness, but if our mandate had been wider, we might have suggested this prospective oversight for all MAID cases.
Senator Cotter: Thanks very much.
Senator Keating: My question is for Dr. Stewart.
Dr. Stewart, I apologize in advance for what might seem a simple question to you but it’s not to me.
There is no definition of mental illness in this legislation, as you probably know. That’s a very broad stroke. When asked about whether diseases like Alzheimer’s, et cetera, fit within that definition, the government said, “Well, no, it’s only diseases that are treated by a psychiatrist.“ But that’s not in the legislation. My question is simple for me; perhaps not for you. We’ve heard both explanations, that, yes, the definition includes Alzheimer’s; no, it doesn’t include Alzheimer’s. What is your assessment of that?
Dr. Stewart: Well, in fact, it’s not an easy question. Thank you for raising it. It’s a very good question. The American Psychiatric Association and the World Health Organization have independently developed a classification of diseases. The American one, which is called the DSM-5 — which stands for Diagnostic and Statistical Manual of Mental Disorders, fifth edition — includes all the dementias in their list along with a number of other neuropsychological conditions. The International Statistical Classification of Diseases, the ICD-10, of the World Health Organization also includes the dementias. Both are extremely broad, and both include the whole area of mental disorders under those classifications.
You have a very good question. I don’t know what the legislation intends when they say “mental disorders.” I assume they mean the same thing as the World Health Organization and the American Psychiatric Association. This classification is widely used in Canada.
Senator Keating: Thank you. That does answer my question, and it actually solidifies my concerns with respect to “mental illness.”
Senator Kutcher: Thank you to the panel members, most of whom I recognize from a previous life. You represent a wide variety of viewpoints, and you represent them vigorously. Thank you so much for doing that.
I have two questions, the first to Dr. Stewart and Dr. Perrot and the next to Dr. Igartua.
We’ve heard many opinions about the complex relationship between suicide and MAID but very little about the differential impact of these on families. Earlier today, Mr. Gretzky, who has personally experienced the impact of loss from both MAID and suicide, told us about the vastly different impacts of these on him and his family.
In your work as MAID assessors, do you consider the possibility that a MAID request may be disguised as a suicide plan or may be a symptom of a mental illness? If so, how do you perform your assessment, keeping this in mind, including understanding the differential impacts of these on families?
Dr. Stewart: Thank you, Senator Kutcher. This is a very important issue. This is something that, very clearly, goes into all MAID assessments. Just this week, I saw a woman who clearly was suicidal and asking for MAID. As part of the assessment, I said to her very clearly, “This is a mental problem. We need to discuss your treatment for depression. This is not a case for MAID.” Then I referred her to the psychiatric service in my hospital. This is part of every assessment.
I want to say another thing. Over my 50 years of practising psychiatry, I have received many letters from patients and their families, thanking me for my care. In the four years since I’ve been doing MAID assessments, the stack of thank-you notes from patients, between the time they have been assessed and when they finally end up having MAID, and from their families is astronomical. I’m amazed by how grateful patients and their families are. Compare that with the kind of mail one gets after a patient has committed suicide. Families are distraught, distressed and beside themselves, after a suicide. After MAID, the patient, prior to the actual implementation of MAID, and their families afterward, feel some peace. Certainly, there is grief; there is no question about that, but it is an entirely different experience. The families feel they are honouring the patient’s request. They have had a peaceful exit, and that’s a very different experience from having someone kill themselves.
Dr. Perrot: Thank you for the question, Senator Kutcher. I would echo what Dr. Stewart has said, and certainly my experience with patients and their families has been one of tremendous appreciation and gratitude for the peaceful exit their loved ones are able to have.
When it comes to assessing suicide versus a rational request for MAID, I think that’s a very important part of any MAID assessment, so the assessment of capacity for that is key. I don’t look at a request for MAID as what I would consider a suicidal gesture. But I think we have to shift the paradigm a bit because now that MAID is a legal right in Canada, we’re looking at the patient choosing to end their own life, and asking for help to end their own life has to be seen as separate from a suicidal gesture in the midst of a psychotic or delusional or major depressive disorder. That’s going to require a certain amount of time and practice to tease out. But those of us doing assessments have to do that and make sure the person is not asking for MAID as a result of their underlying mental illness but really assess for that capacity.
I do think there’s a significant difference between seeking assisted dying because of irremediable suffering even from the mental illness versus a person trying to end their life due to the mental illness.
I have lost track of the number of elderly patients over 80 years old whom I have assessed and even provided MAID for who had tried to kill themselves. They didn’t even know about MAID, and it may surprise you to hear that there are many Canadians who do not know about the legal existence of MAID. These patients were suffering so intolerably that they tried to end their own lives. They ended up on psychiatric wards and then other assessors denied them MAID because they had to be admitted to a psychiatric ward.
These are people who had never had a history of mental illness, depression or a history of a suicide attempt. They were desperate and trying to take matters into their own hands. I have been stunned at the number of very elderly people, even patients over 100 years old, who have said, “If this wasn’t legal, I would have to do this myself.” These are people who, again, had never attempted suicide or even thought about suicide in their earlier lives. I think it’s important to do careful capacity assessments to make sure the person is choosing MAID in a rational way, but I also think we need to more broadly educate the Canadian populace about the availability of MAID so people don’t try to hurt themselves, commit suicide, because they don’t know MAID is available to them.
Senator Batters: My short question is to Dr. Trevor Hurwitz. I wanted to give you an opportunity to respond. You clearly indicated in your opening statement today that mental illness is not irremediable. Dr. Hurwitz, do you agree that the estimated 30% of people with mental illness who “get worse” does not equate to 30% irremediable, and that, in fact, many of that 30% who get worse can and do later get better? What would you say about the fact that that is the reason why mental illness should not be eligible for MAID and why a sunset clause to allow its automatic inclusion is dangerous?
Dr. Hurwitz: Thank you for that question. Again, based on the numbers that come to us for surgery because of irremediable — they’ve tried everything — tells me that our treatments are very successful in actually dealing with depression, provided the patients identify themselves as psychiatrically ill and will then accept treatment.
My concern about the current legislation is if you remove the non-foreseeable death and you include the criteria that cannot be relieved under conditions that they consider acceptable, which is part of Bill C-14 — if you include those together, then you will turn around to a patient and say, “Look, I think you should have another course of ECT.” And they will say, “It’s not acceptable to me, and I’ll turn it down and go on to get MAID.” In Holland, 56% of people who were offered MAID turned down other treatments and got access to MAID. I have a big concern about the protection of our patients who will include the clause in Bill C-14 to then turn down other treatments which could be really effective and then will go on to get MAID and should have gone on to get other treatments.
Senator Batters: Thank you.
The Chair: Thank you. Senators, this concludes our last panel. I want to thank all the panellists for taking the time to be here and to help us understand the issues of MAID. I also want to tell you that you helped us by answering questions that we had on these issues. Thank you very much, panellists.
Senators, some of you have sent in observations. If anybody else has observations in both languages, can you please send them to the clerk?
Thank you very much, senators and panellists.
Senators, I would like to inform you that, with the pre-study and this study of the bill itself, we have heard from 130 witnesses. I would suggest that we’ve really come to know this issue well. Bravo to all of us.
I have one matter that I have to deal with before we go into clause-by-clause consideration. As senators who have been members of the Legal Committee for a long time know, every year, or as often as we need, we get an updated Criminal Code. You have the budget in front of you. I have asked Mark if we can get a digital copy because the likelihood of many of us returning to Ottawa for a while is slim. He’s going to look into that. If you want a digital copy, please let Mark know.
Senators, may I have a mover for the budget? Senator Cotter so moves. Is this budget acceptable? Is there any discussion? I don’t see any. Do you accept this budget?
Hon. Senators: Agreed.
The Chair: Perfect. Otherwise Mark will tell me, no, you didn’t get permission.
Senators, I know all of you know this, but just as a reminder and because we are virtual, before we begin, I would like to remind senators of a number of points. If at any point a senator is not clear where we are in the process, please ask for clarification.
It has been proposed that we follow the protocol that was followed with Bill C-14 and that amendments be proposed to Bill C-7 at third reading. Is that agreeable, senators?
Hon. Senators: Agreed.
The Chair: Thank you. And just a technical point, a reminder, that if a senator is opposed to an entire clause, I would remind you that in committee the proper process is not to move a motion to delete the entire clause but to vote against the clause as part of the bill. One option is that we could — just for this committee and for this virtual hearing — have an “on division” agreement on a clause. Senators can say “on division” when I ask if a clause should be carried because of all the challenges we have with virtual voting. You know I will try my utmost to make sure to give everybody an opportunity, but if for any reason I miss you, please — none of you are backward on that. I will leave it at that.
Finally, I’d like to remind senators if there is any uncertainty as a result of a voice vote, the most effective route is to request a roll call vote. Senators should be aware that any tie negates the motion in question. As is the custom, at this time we also have officials from the Department of Justice: Carole Morency, Director General and Senior General Counsel, Criminal Law Policy Section; Joanne Klineberg, Acting General Counsel, Criminal Law Policy Section; Caroline Quesnel, Counsel, Criminal Law Policy Section.
Mr. Palmer: Senator Jaffer, Senator Plett has a point when you have a moment.
The Chair: Sure. May I finish? From Health Canada, we have Abby Hoffman, Senior Executive Advisor to the Deputy Minister; Jacquie Lemaire, Senior Policy Advisor, Strategic Policy Branch; and Karen Kusch, Senior Policy Advisor, Strategic Policy Branch.
Senator Plett: First of all, I don’t disagree with anything you’ve suggested. If I am able to, I’d like to make just a couple of points before we start.
I’ve never been very fond of a process where we have witnesses in the morning or during the day and then proceed immediately to clause by clause. It always, I believe, gives the impression that we aren’t putting enough stock in witness testimony. We heard that even today; after we heard some powerful testimony this morning, one of the witnesses who gave that powerful testimony had a real concern that her testimony wasn’t being given the due consideration it deserved by us going to clause-by-clause.
However, having said that, we know what the process is. As you said, we can debate this at length at third reading, and we can do amendments at third reading, so I want to support what you have suggested.
I would like to say, however, Madam Chair, as I don’t think it is any secret, I am inherently opposed to the entire piece of legislation. There are some others who are as well. So I would like to simply, at the start, go on the record that, rather than making an issue out of this at every clause, I would ask — and there may be those who want to amend or vote against clauses, and that’s fine; I don’t want to pretend that my voice is the only one here — but I do want to go on record right at the start, rather than doing this on each clause, that I would like to be on record as being “on division” on each clause. At the end of the bill, I will then make further points at third reading.
But I don’t want to interrupt the proceedings; I want to move along. So if I could just make sure that the clerk is aware that there are a few of us — I’m not the only one, but I won’t name names — we would like to see it recorded as “on division” for every clause.
The Chair: Senator Plett, you’ve made my job a little easier, and I thank you for that.
Is there anyone else who wants to either let it be known now that they’re on division or something else?
Senator Batters: Yes, thank you very much. I have much the same point as Senator Plett, and I also wanted to indicate that simply because I’m not going to bring amendments here at today’s committee meeting does not mean that I won’t be bringing amendments at third reading. To me, that would be the better place because it then gives the opportunity to properly reflect on the very powerful testimony we’ve heard over the last three days and also from November. It would also allow all senators in the Senate at large to take part in this very important debate, as well as discussion about those amendments and have a voice on those.
But I certainly want to let the witnesses know that their voices were very much heard, and simply because there may not be any or many amendments today does not mean that there won’t be any in the overall scheme of things. Thank you.
The Chair: Would anybody else like to speak at this point?
Senator Gold: Thank you very much. On behalf of the government, I want to thank you, chair, members of your steering committee and all members of the committee, as well as all senators who participated in these hearings. You’ve done a magnificent job at bringing to light all of the issues surrounding this most complex and important issue. Hats off to all of you, and thank you for your good work.
I look forward to the debate in the chamber, as I’m sure all Canadians do, as well. Thank you very much.
The Chair: Thank you, Senator Gold.
[Translation]
Senator Dupuis: Before we move on to clause-by-clause consideration, I want to point out that we were told amendments should be submitted at third reading. That is why we don’t have any amendments today.
[English]
The Chair: Thank you. Does anybody else want to speak to this? I don’t see any hands, so may I have your permission to proceed? Okay.
Is it agreed that the committee proceed to clause-by-clause consideration of Bill C-7, An Act to amend the Criminal Code (medical assistance in dying)?
[Translation]
Shall the title stand postponed?
Hon. Senators: Agreed.
[English]
The Chair: Shall the preamble stand postponed?
Hon. Senators: Agreed.
Some Hon. Senators: On division.
The Chair: Shall the clause 1 carry?
Some Hon. Senators: Agreed.
Some Hon. Senators: On division.
Senator Plett: Chair, I think you should announce every time, please, that it is “on division.” I don’t want to interrupt.
The Chair: I will, Senator Plett. Thank you for reminding me.
Shall clause 2 carry, on division?
Hon. Senators: Agreed.
The Chair: Shall clause 3 carry, on division?
Hon. Senators: Agreed.
The Chair: Shall clause 4 carry, on division?
Hon. Senators: Agreed.
The Chair: Shall the preamble carry?
Some Hon. Senators: Agreed.
Senator Batters: On division.
The Chair: Shall the title carry?
Some Hon. Senators: Agreed.
Some Hon. Senators: On division.
The Chair: Shall the bill carry, on division?
Hon. Senators: Agreed.
The Chair: Senators, is it agreed that the law clerk and the parliamentary counsel be authorized to make technical, numerical and typographical changes and adjustments to the amendments adopted by the committee?
Mr. Palmer: Senator, we don’t need that one, because there are no amendments.
The Chair: Of course, sorry. Okay.
This is the last thing: Does the committee wish to consider appending observations to the report?
Some Hon. Senators: No.
Some Hon. Senators: Yes.
The Chair: Senators, I’m in your hands. Some people are saying “no” and some want observations. What would you like me to do?
Senator Plett: You’ll have to call a vote.
The Chair: Okay, I’ll call a vote.
Mr. Palmer: To be clear, the question is: Shall we append observations to the report?
The Honourable Senator Jaffer?
Senator Jaffer: Yes.
Mr. Palmer: The Honourable Senator Batters?
Senator Batters: No.
Mr. Palmer: The Honourable Senator Boisvenu?
Senator Boisvenu: Yes.
Mr. Palmer: The Honourable Senator Boniface?
Senator Boniface: Yes.
Mr. Palmer: The Honourable Senator Boyer?
Senator Boyer: Yes.
Mr. Palmer: The Honourable Senator Carignan?
Senator Carignan: No.
Mr. Palmer: The Honourable Senator Cotter?
Senator Cotter: Yes.
Mr. Palmer: The Honourable Senator Dupuis?
Senator Dupuis: Yes.
Mr. Palmer: The Honourable Senator Gold?
Senator Gold: I abstain.
Mr. Palmer: The Honourable Senator Harder?
Senator Harder: No.
Mr. Palmer: The Honourable Senator Keating?
Senator Keating: Yes.
Mr. Palmer: The Honourable Senator Plett?
Senator Plett: No.
Mr. Palmer: The Honourable Senator Tannas?
Senator Tannas: No.
Mr. Palmer: The Honourable Senator White?
Senator White: Yes.
Mr. Palmer: Yes, 8; no, 5; abstentions, 1.
The Chair: Senators, we will be discussing observations. I suggest that we take 10 minutes, because some observations have just arrived. So let us take 10 minutes to look at the observations so that the process will be faster. Is it acceptable to suspend for 10 minutes?
Senator Plett: Did you not suggest yesterday, Chair, that observations had to be in last night if they were going to be included?
The Chair: I did.
Senator Plett: We got them 15 minutes ago, and they are long observations. It’s just highly irregular that we would be discussing the length of some of these observations that I tried to briefly skim over and you clearly suggested they had to be in last night.
The Chair: Senator Plett, I did. But many observations arrived later, and so I’m in your hands as to what we should do. We didn’t pass it or anything. It was just me suggesting. Just because I suggest doesn’t mean that’s what we agreed on.
Senator Wallin: I was sitting in for a session yesterday and sitting in officially in a session today. It was my understanding at the end of the last session that observations were still able to be considered at that point. I didn’t hear, in the session I attended yesterday, what Senator Plett refers to, so right now was my first opportunity to send in an observation.
The Chair: Do you want me to call another roll call or are we going to accept the observations?
Senator Plett: No, I don’t want another roll call. I’m fine. I just think it’s highly irregular that we are doing observations with this short a period of time. These observations, many of them, are opinions, and I really don’t want to have this type of debate and argument over different opinions. There are some observations that I fully agree with. But again, this is clearly my opinion. When we make some of the statements that I have read very quickly in these observations, I’m not sure what the value of them is, but clearly the vote carried. I’m okay with that. Whether or not you called for a vote yesterday, you are the chair. You are in charge of this committee, and when you make a statement that they should be in — whether or not Senator Wallin heard it or not is irrelevant. You did say that, but I do not want a roll call and I’ll simply back down on it.
The Chair: Thank you, Senator Plett. Senators, may we discuss the observations in camera? Is that agreed that we go in camera to discuss the observations?
Hon. Senators: Agreed.
The Chair: Okay. I will suspend for 10 minutes so people can look at the observations. Senators, if I may respectfully say to you that, in the past, we would not have contested things in observations. It was normally, on the whole — not always, but normally — just short factual things or things we had heard, but not long observations.
So I would respectfully ask in the 10 minutes that you look at the observations and let us know if you still want to have those observations. We will take 10 minutes.
Mr. Palmer: One note before we suspend, because we’re going in camera, I know there are staff listening on ParlVu; we’re going in camera so staff will be allowed into the Zoom meeting as per the committee’s motion.
The Chair: Yes, thank you. So Mark, what time are we coming back?
Mr. Palmer: It’s 4:25 now so 4:35 eastern time.
The Chair: Thank you.
(The committee continued in camera.)