Evidence of meeting #4 for Medical Assistance in Dying in the 44th Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was medical.
A video is available from Parliament.
The Joint Chair Hon. Yonah Martin
Thank you
My question is for Dr. Kaya.
Under the best of circumstances, often there can be barriers to accessing all sorts of resources and services. Are there people requesting MAID due to a lack of access to resources needed—such as palliative care—and other reasons? It could be language. They may not have family. There are a lot of reasons.
Would you expand on that, please?
Associate Professor of Medicine, University of Toronto, President, Canadian Society of Palliative Care Physicians
Thank you.
We definitely know of cases where patients have requested MAID because of lack of access to palliative care. This might well be because of language barriers, or it might be because of an inability to articulate what they would like. They're not necessarily health literate.
We also have some special and vulnerable populations. They're not like the people in this room, who are well educated, articulate and capable of essentially informing what they want and being in control of what they want. At the other end of the spectrum, we have vulnerable groups who have difficulties understanding the health care landscape.
If we have difficulty understanding health care, then it is not surprising that these people would have difficulty understanding it, let alone MAID. We really want to be careful about making sure that the information we provide is accessible to everybody, whether that means language issues or access for people living in rural and remote communities who don't have access to the resources and care that they need. There are a lot of complicated issues at play here that we really don't have a good grip on.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you very much. That completes our first panel.
I would like to thank Dr. Kaya and Dr. Downar.
I would also like to thank Dr. Viens.
I thank you very much for your testimony tonight. We appreciate your making yourself available for this very important study.
With that, we will suspend momentarily and set up panel number two.
Liberal
The Joint Chair Liberal Marc Garneau
Good evening. Welcome to the second panel as part of our continuing study focusing on palliative care.
For the new witnesses and for any of the new members, this is a reminder that before speaking, please wait until I recognize you by name. I'm one of the co-chairs. My name is Marc Garneau.
This is also a reminder that all comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly. Interpretation in this video conference will work like in an in-person committee meeting. You have the choice at the bottom of your screen of floor, English or French. When you're not speaking, please mute your microphone.
With that, I would like to welcome our three witnesses for this second panel: Dr. Sandy Buchman, chair and medical director, Freeman Centre for the Advancement of Palliative Care, North York General Hospital and past president of the Canadian Medical Association; Dr. Harvey Max Chochinov, distinguished professor of psychiatry, University of Manitoba; and Dr. Marjorie Tremblay, physician.
Welcome to all of you.
We'll start off with each of you being able to address the committee for five minutes.
Dr. Buchman, we'll start with you. You have five minutes.
Dr. Sandy Buchman Chair and Medical Director, Freeman Centre for the Advancement of Palliative Care, North York General Hospital and Past President, Canadian Medical Association, As an Individual
Good evening, everyone. Thank you for the invitation to participate in this important panel on MAID and palliative care.
First and foremost, with regard to a little on my background, I was trained as a family physician, for 22 years, and I've spent the last 16 years or so as a full-time palliative care physician, working both in hospital ambulatory clinics and home-based palliative care, including palliative care for those living on the homeless continuum. As well, as mentioned by Mr. Garneau, I have a national perspective both as a past history of being president of the Canadian Medical Association and as president of The College of Family Physicians Canada.
I am also a MAID assessor and provider, in addition to my palliative care work. Currently I am building a hospice in Toronto. We only have one general hospice for adults in all of Toronto—we can talk about access to palliative care—and I am also a supporter and founder of a facility to provide medical assistance in dying in Toronto called MAiDHouse.
What I am saying I guess is that I walk two roads, in support of vastly improved access—a strong advocate for palliative care—but support the right of Canadians to assess the eligibility for medical assistance in dying. I went into this profession to alleviate suffering, and after years of reflection came to the feeling that I could do the best in addressing suffering when I encounter the limitations of modern medicine, including the limitations of palliative care, and am able to address my patients' suffering through the provision of MAID. I consider myself a conscientious provider.
I would like to state at the outset that I think there needs to be improved education and training, and perhaps certification both in the fields of palliative care and in the provision of medical assistance in dying. I strongly believe that the most important thing to do—any clinician can do as part of an assessment—when people express the wish to hasten death is to address and explore their suffering in all of its domains.
In palliative care, we follow the teachings of Dame Cicely Saunders, who was one of the original palliative care physicians with a background as a social worker nurse and physician, who started St. Christopher’s Hospice in the U.K. in the sixties. She talked about four domains of suffering: the physical, the psychosocial, emotional and the spiritual existential. I believe that too many clinicians in this world of MAID will just prefer when a patient asks for a hastened death...as opposed to exploring their suffering. I believe that's an important competency, and I'm happy to speak to that more.
Ultimately, we need to maintain the rights of Canadians to access medical assistance in dying when their suffering is deemed intolerable and other forms of treatment aren't acceptable.
Thank you, and I look forward to your further questions.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Dr. Buchman.
We'll now go to Dr. Harvey Chochinov.
Doctor, you have the floor for five minutes.
Dr. Harvey Max Chochinov Distinguished Professor of Psychiatry, University of Manitoba, As an Individual
Thank you, honourable Chairs.
By way of background, I am a distinguished professor of psychiatry at the University of Manitoba and former chair of the External Panel on Options for a Legislative Response for Carter v. Canada. I'm also a long-time researcher and clinician, who has published extensively on psychosocial matters pertaining to palliative care.
I'd like to use the brief time I have to make five specific points.
Number one, some studies, both in Canada and the United States, imply that medical aid in dying is for the so-called white, wealthy and worried. In other words, these studies suggest that we don't need to be concerned that people seeking to hasten death are vulnerable or disenfranchised, but rather are well positioned to make autonomous choices. This is a very narrow and, I would say, problematic interpretation of the data. If we look at MAID deaths reported by Health Canada, most are elderly and fraught with various disabilities and comorbid medical conditions.
However, the most significant concern about this data is that it pertains to patients with less than six months to live or those whose death was reasonably foreseeable.
If you want to look at how vulnerability and hastened death will play out in Canada, we need to look at the Benelux countries or Switzerland, where, like now in Canada, dying or approaching death is not a requirement. In Switzerland, assisted suicide is more common in women—who suffer higher rates of clinical depression—and those who are living alone, divorced or without children. Loneliness and a lack of social support are key vulnerabilities that we can expect to play out in Canadian MAID. Sixty per cent of patients who have received euthanasia for mental illness in the Netherlands were described as socially isolated and lonely.
Like persons with disabilities, we also know that mental illness is associated with a higher rate of poverty and lack of access to critical support services, food and housing security, things that can wear down the human spirit and undermine the desire and wherewithal to go on living.
Number two, it's also claimed that whether you are dying, disabled, mentally ill or chronically suffering, you are free to exercise your autonomy and choose whether you want to live or die.
If someone is standing on an open balcony in a high-rise apartment rapidly being engulfed in hot flames, is it reasonable to say that they have a choice of whether or not to jump? Exercising autonomy means having real and viable options. If you're dying in the absence of quality and available palliative care; if you're disabled but don't have access to supports and services, or social, housing, and employment opportunities; if you have chronic pain or uncontrolled symptoms and don't have timely access to a specialist; if you're struggling with a mental illness and can't find a therapist who is prepared to help you grapple your way towards recovery, can we really say you're exercising an autonomous choice?
Did the 51-year-old Ontario woman with severe sensitivities to chemicals, who chose MAID two weeks ago after failing to find affordable housing free of contaminants, really make an autonomous choice? Or, did she just get tired of being seen as “expendable trash, a complainer, [and] useless”, and out of desperation, jumped.
With regard to number three, individual or person autonomy is like helium: its nature is to expand and occupy whatever space it is given. Look at what's happening in Canada. We've removed “reasonably foreseeable death” and soon will include mental illness. We're now contemplating children and advance directives. If individual autonomy is the driver and we observe what is happening with our European brethren, we will see MAID expand to include life completion and tiredness of life.
Number four, various palliative care researchers, myself included, are advancing the art and science of addressing suffering for patients with life-threatening and life-limiting conditions. While dignity therapy, developed by my group in Winnipeg, or others, such as meaning-centred psychotherapy or calm therapy, are not a panacea for suffering, they are proving to be effective in mitigating distress while enhancing end-of-life experience.
Number five, whatever direction Canada takes on MAID, it must first and foremost support the continued study and ongoing provision of palliative care. Fewer than 2% to 3% of Canadians will ever avail themselves of MAID, yet nearly all Canadians living with a life-threatening or a life-limiting illness could benefit from palliative care even though only a minority will receive it. In instances when there aren't real choices, we must tread carefully into conversations about the right to jump and do all we can to douse the flames of human suffering across Canada.
Thank you.
Liberal
Dr. Marjorie Tremblay Physician, As an Individual
Good evening.
I would first like to thank the members of the committee for inviting me to participate in this meeting.
I am a family physician. I have been providing palliative care for 20 years. I provide it in hospitals, at home and in a hospice. I am the medical director of the Maison de la Sérénité. I am also a researcher on the steering committee of the Quebec Network for Research in Palliative and End-of-Life Care, or RQSPAL, in Quebec.
First of all, I would like to say that I fully support what Dr. Kaya has said. So I'm not going to repeat everything she just said.
I would like to make a slight correction to what Mr. Thériault and Dr. Viens said, when they said that Quebec has made medical assistance in dying part of a continuum of care. If we rely on the Act Respecting End-of-Life Care—we must refer to the act, not its interpretation—the definition is clear. As Dr. Downar said, it is end-of-life care, and in the act it is clearly stated that there is palliative care and medical assistance in dying. So they are two different entities. This does not mean that just because we make them two different entities, we are opposed to them. It is important to say that. Indeed, every time we make the distinction between the two entities, some people seem to think that we are opposed to them, but that is not the case at all. According to the definition of “palliative care” in the End-of-Life Care Act, it is care related to the respect of a natural process. We are there to alleviate whatever discomfort there is, without hastening death or prolonging life. It is about respect for the natural state of advanced illness.
In 20 years, I have never seen so much confusion about these two concepts as I do now. Tonight, it's clear from listening to you that it all sounds a bit confusing.
When the term “palliative care” is used, far too many people think that it is given for a few hours, days or weeks before a patient dies. Palliative care is not just that. It is indeed end-of-life palliative care, but it has a different option, which is medical assistance in dying. The use of palliative care is a palliative approach and it takes place for months or even years before the patient dies. The palliative approach, which we could call an integrated palliative approach, aims to ensure that the patient with an advanced illness, who begins to have symptoms of discomfort affecting his or her quality of life, can eventually seek palliative care, knowing what it can offer. If they don't know, they can't ask for it, and if the patient feels that it is just end-of-life care, they won't ask for it sooner.
This lack of information results in patients not being identified, and this lack of early identification is costly to the health system. The patient, who should not be in intensive care, given his condition, ends up undergoing a lot of suffering. Instead, they should be in a hospice or simply at home, surrounded by their family, with appropriate care for their condition.
The resources are there, but they are deficient, because the population is aging and the needs are only increasing. So we need to inject money into the system. Above all, it is important to know that the patient's condition and the type of care must be matched so that the patient is in the right place and can access the right resources. You have to protect the quality of life of patients for two, three, four or five years, as long as the patient is going to need it. That's what good palliative care is all about.
One of you asked what is meant by “having good palliative care”. I think it is having access to enough resources, both material and human resources, and having access to all the places that provide such care for all diseases, not just cancer. I am thinking in particular of patients suffering from heart failure. Take the example of a heart failure patient whose heart is quietly dying. He may have two, three or four years to live. If he has symptoms of discomfort, he should have the option of seeing a palliative care physician.
Will this patient be able to access a specialist palliative care doctor? It is quite possible that they will not. This is where we see the need. Indeed, the complexity of cases sometimes requires the ability to access a specialist palliative care physician with experience in this area.
There should be a national awareness campaign about palliative care. Clearly, in Canada, we don't have a good understanding of what palliative care is. We rely on some people's interpretation and say that's what we're doing, when we're kind of misrepresenting what palliative care is.
Liberal
Physician, As an Individual
In my work, what people tell me most often is that if they had known what palliative care could offer them, they would have asked for it much sooner. They wouldn't have been afraid to do it.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Dr. Tremblay.
We will now have our question period.
I yield the chair to Senator Martin.
The Joint Chair Hon. Yonah Martin
Thank you, Monsieur Garneau.
The testimonies have all been very insightful. Thank you.
We'll go into questions from both Ms. Vien and MP Gladu.
They're going to split the five minutes, so two and a half minutes each, starting with Madame Vien.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
Thank you very much, Madam Chair.
Dr. Tremblay, you just said that if people had known what palliative care could offer, they would have gone down that road. However, according to data that we have received, many people have made the decision to request medical assistance in dying, even if they had access to palliative care.
In your practice, do you provide medical assistance in dying?
Physician, As an Individual
No, I do not, but that does not make me someone who is against medical assistance in dying. It is very important to mention this.
I am in no way against the person's choice, but, as another witness said, to allow for a real choice, the options must be available.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
Clear and comprehensive information about palliative care is needed, and this also applies to the issue of medical assistance in dying.
I don't have much time, Dr. Tremblay. So I'm going to move on to another question.
You mentioned a national awareness campaign on palliative care. What specifically are you thinking about?
Physician, As an Individual
I am thinking of a clear definition of what palliative sedation is. Earlier, Dr. Viens said that he administered palliative sedation to patients who could not access medical assistance in dying.
There are very clear criteria that define palliative sedation. There has to be a vital prognosis of no more than two weeks and refractory symptoms that cannot be adequately relieved with medication without the consent of the person or the family. Continuous palliative sedation cannot simply be given because a patient has not reached a point where they can request medical assistance in dying.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
Would the national campaign you envisage be directed to the medical profession and nursing staff? Would this campaign also target the general public?
Physician, As an Individual
The campaign would target the general public and health professionals, of course, so that everyone could benefit. The issues covered would not be the same, but it would be important that the campaign be targeted to both health professionals and the general public.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
Do you think that a national campaign on the two options available would be equally beneficial?
Physician, As an Individual
It would be very beneficial, but I think medical assistance in dying has been publicized enough. At the moment, it's very important to make the distinction between palliative care and medical assistance in dying, and just because you make that distinction doesn't mean you're against medical assistance in dying.
Conservative