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.
6:35 p.m.
Liberal
The Joint Chair Liberal Marc Garneau
Good evening, everyone.
I call this meeting to order.
Welcome to this meeting.
I'm immediately going to hand it over to my colleague co-chair, Senator Martin, if she is ready.
6:35 p.m.
The Joint Chair Hon. Yonah Martin, Senator, British Columbia, C
Thank you, Mr. Co-Chair.
Welcome.
I would like to begin by welcoming members of the committee, witnesses as well as those watching this meeting on the web.
My name is Yonah Martin, and I am the joint chair of this committee. I am joined by the Honourable Marc Garneau, joint chair of this committee, member of the House of Commons.
Today, we are continuing our examination of the statutory review of the provisions of the Criminal Code relating to medical assistance in dying and their application.
In regard to the health and safety of everyone taking part in this committee, the Board of Internal Economy requires that committees adhere to the health protocols in effect until June 23, 2022. As joint chairs, we will enforce these measures, and we thank you for your co-operation.
With that, I would like to remind members and witnesses to keep their microphones muted unless recognized by name by one of the joint chairs.
As a reminder, all comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly. Interpretation in this video conference will work like an in-person committee meeting. You have the choice at the bottom of your screen of floor, English or French.
I would like to now welcome our witnesses for this first panel.
As individuals, we have Dr. James Downar, critical care and palliative care physician, and Dr. Pierre Viens, family physician. On behalf of the Canadian Society of Palliative Care Physicians, we have Dr. Ebru Kaya, president, and in the field of medicine at the University of Toronto.
Thanks to all of you for joining us as we continue our very important study.
We will begin with opening remarks by Dr. Downar, who will be followed by Dr. Viens and Dr. Kaya.
You will each have up to five minutes, which we will time, and I will give you a 30-second warning as that time approaches.
To begin, we have Dr. Downar.
6:35 p.m.
Dr. James Downar Critical Care and Palliative Care Physician, As an Individual
Thank you very much.
I'll try to keep my comments as brief as I can. I've already sent in some notes for people to follow.
I'm the head of the division of palliative care at the University of Ottawa. I have a clinical research chair in palliative and end-of-life care and a master's degree in ethics.
I've taken an interest in this issue for some time, have served as an expert witness in different cases involving medical assistance in dying and have developed educational materials for medical assistance in dying for different jurisdictions, including Canada and Australia. I've also led a few studies looking at MAID and people who receive medical assistance in dying to understand a bit about their experience and about who these individuals are, but I'm not here representing any organization or agency.
I've previously spoken in favour of legalization of medical assistance in dying, but I'm not here to promote MAID and certainly not to advocate for any position on any of the remaining issues before Parliament about mature minors, advance directives, etc.
The main points I would like to make today really are that I'm very grateful to say that funding for palliative care and support for palliative care research is improving and that there have been some notable successes in that regard. I really want to thank Parliament and Health Canada for that, but I really emphasize the need to continue doing this and to reduce barriers so that we can improve the way we treat suffering among the dying.
I've heard a lot of comments in the previous sessions about the social determinants of health and the vulnerable. I think it's very important to say that we really do need to address social determinants of health, including housing, food security, pharmacare and dental care, because these are important to the health of all Canadians. I think it's important to recognize that these measures are really not about medical assistance in dying at all, because structurally vulnerable individuals are already far less likely to use medical assistance in dying than anybody else. We should do these things simply because they're a good idea and the right thing to do.
There are a lot of narratives about medical assistance in dying in Canada. These are generally driven by ideological or political aims that really have nothing to do with saving lives or protecting the vulnerable. I think we've learned an awful lot over the past 20 years about how medical assistance in dying is provided in different countries, including Canada, and who is requesting it and who is receiving it.
What we know very much is that it is not what has previously been thought. It is heavily driven by something known as existential distress. This is a type of suffering for which we have very little or nothing to offer. We really should be attempting to understand this type of suffering better, to identify new forms of treatment and to support research into identifying new forms of treatment for it, so that we can address this suffering as really the root cause of MAID requests. I think that's something on which everybody—as controversial as this issue might be—can agree.
Finally, I'd like to also mention that our experience through Bill C-14 and Bill C-7has been that Parliament, in the past, has really been unwilling to address medical assistance in dying and key issues in a proactive way, preferring to let the courts strike down laws and leave the government to replace them. This unfortunately happens usually in a very partisan process—a bit of a circus, almost—in an accelerated time frame and with predictable results.
I really love that there's now a committee like this that's going to be studying some of the important issues and reviewing things. I would really encourage a committee like this to continue operating to try to make sure that the remaining questions about medical assistance in dying are handled in a way similar to what Quebec's parliament does: proactively addressing questions, studying them thoroughly, forming committees to really review evidence and then developing nuanced answers. I'm not suggesting that we should go the same way Quebec has on any issue. I'm simply admiring its process and encouraging us to follow it.
I think we can get into some further discussions around some of the drivers, but I really want to emphasize that there is absolutely no data suggesting that the practice of MAID at this point is driven to any degree by poor access to palliative care, socio-economic deprivation or any isolation. Quite the contrary: The people who receive MAID almost invariably have excellent access and are receiving palliative care far more than the average population. They tend to be very wealthy, privileged, non-institutionalized and married, not widowed or single.
The national reviews on this have shown that the number of people who received MAID and who had trouble accessing disability services and palliative care services is tiny—absolutely minuscule. That's very reassuring. Obviously, it could be even lower than 1% or 3%, but that's pretty good. Certainly, it would not be accurate to say that it's being driven by a lack of access to services.
I really want to emphasize a bit of information about the research and the successes that have been found in research—
6:40 p.m.
Critical Care and Palliative Care Physician, As an Individual
Okay.
I had better just wrap it up, my final point here being that if we're going to talk about the vulnerable and the socially deprived, I think we need to emphasize that there are really important things that we as a society and we as a Parliament can do to help those people—things like vaccine mandates, pharmacare, etc.
I really love how much people in Parliament talk about the need to protect the vulnerable. I really wish those sentiments would carry over to important things that would save lives. We've had a hard few years—
6:40 p.m.
Dr. Pierre Viens Family Physician , As an Individual
Good evening.
Thank you for welcoming me to this committee.
I have been practising medicine in the field of palliative care for 30 years, and I have administered medical assistance in dying 180 times in the last six years, mostly at home.
I was asked to speak a little about palliative care. At the end of my presentation, I will share with you my views on advance medical directives.
Five percent of patients at the end of life who receive excellent palliative care are still seeking medical assistance in dying. Why? Because existential suffering at the end of life cannot be relieved to the patient's satisfaction by any current conventional palliative approach.
First, we must not forget that any curative or palliative care can be legally refused. Nor should we forget the ethical principle of respect for individual autonomy. The individual is the only one entitled to make decisions about their own end of life and to judge the results of the care given to them.
When palliative care physicians claim that medical assistance in dying would not be necessary if good palliative care were available everywhere, one should first define what is meant by "good" palliative care.
When I assess a request for medical assistance in dying to see if it meets the eligibility criteria, the law recommends that I ensure that the person is aware of the alternative options to medical assistance in dying that are available, including palliative care. When the palliative care physician is about to put the patient under continuous sedation until death, why does the law not require that the patient be made aware of the existence of medical assistance in dying, to allow them a choice, as I am required to do?
I have helped thousands of people to die. I can testify that medical assistance in dying is probably the most compassionate life care, the most respectful of the person and their values, and the most comfortable for them and their family. Medical assistance in dying should be considered appropriate care in a logical continuum of palliative end-of-life care, which can be requested when, in the patient's opinion, all reasonable efforts have been made. It should be made clear in law that medically assisted dying is part of a continuum of palliative care.
The conscientious objection of caregivers to the administration of medical assistance in dying must be maintained, but conscientious objection applies only to the caregiver as an individual. It cannot apply to an institution, a health care facility or a social professional group.
In 2015, the law passed in Quebec allowed hospices not to offer medical assistance in dying. Since then, 50% of them have changed their minds under social pressure from the community. All health care facilities in Canada, public or private, especially if they are partially publicly funded, should be required to offer this care, even if it means bringing in external physicians to implement it.
Finally, it would be necessary for what is meant by "palliative care" to be defined in a way that is more consistent with reality. To think, or even wish, that the intense level of care found in most hospices should be set as the norm is unrealistic and, ultimately, undesirable. Basic palliative care is comfort care. The family doctor who relieves the pain of his elderly patient suffering from generalized cancer at the end of life is providing palliative care. When I report to Health Canada about a medically assisted death that I have performed, I am asked on the reporting form if that person received palliative care and for how long. Let me tell you that the thousands of responses to this question received to date are probably meaningless, because the term "palliative care" has never been defined at the operational level.
I had a few more ideas to share with you about advance medical directives, but since I don't have much time left, I'll try to do it very briefly, if I may.
First, when a person has just been diagnosed with Alzheimer's, the doctor should adequately inform them of the nature of the disease, its course and prognosis, and the possible treatment options. That person could then define in their own words...
6:45 p.m.
Family Physician , As an Individual
Five minutes is really not enough.
Thank you.
6:45 p.m.
Dr. Ebru Kaya Associate Professor of Medicine, University of Toronto, President, Canadian Society of Palliative Care Physicians
Thank you for the opportunity to talk about the state of palliative care as part of the statutory review of Canada’s current legislation on medical assistance in dying.
I am a palliative care expert with formal training in the field of palliative medicine and the program director for the Royal College of Physicians of Canada’s two-year residency program in palliative medicine at the University of Toronto. I am also the president of the Canadian Society of Palliative Care Physicians, which is committed to improving quality and access to palliative care for all Canadians through advocacy, partnerships, research and physician education. We are the national specialty society representing palliative care physicians, and physicians with a special interest in palliative care, throughout Canada.
I work at Toronto General Hospital and provide palliative care to patients who have been diagnosed with a life-threatening illness. Some of my patients have advanced cancer. Others have non-cancer diseases, such as chronic kidney disease and heart failure. I manage their symptoms, whether physical, psychological, social or spiritual.
The vast majority of patients and their families do not understand the role of palliative care. I spend time explaining what we do and who we are, and work on demystifying and destigmatizing our work. It is not uncommon that I have to convince patients that by managing their symptoms, I will not hasten their death. Most patients are often relieved, and are happy to continue to be followed by our palliative care team.
There are times, especially at my initial consultation, when patients tell me that they are considering MAID. It is my job to explore the reasons underlying that request and provide suggestions and support based on my expertise and formal training, not simply call the MAID team. With evidence-based psychotherapeutic options to treat depression, anxiety, demoralization and hopelessness, most patients end up not choosing MAID. This patient-centred “shared care” model of decision-making is a hallmark of quality palliative care.
I also teach and train palliative care residents as well as other clinicians who provide a palliative approach to care based on the patient populations they are looking after. This includes family doctors and specialists, such as cardiologists and nephrologists, and the many interdisciplinary colleagues who work alongside them. This work is incredibly important, as there is evidence from Canada and around the world that a palliative approach to care improves symptoms and quality of life for patients. When there are more complex issues, the way palliative care is presented to patients makes a difference to whether they will accept specialist palliative care services similar to mine.
Palliative care needs to be a distinct service from MAID, with separate funding and resources. Palliative care and MAID need to remain distinct and separate. Our palliative care community has worked hard over the past 40 years to move away from being associated with end-of-life care only. We do not want to go backwards. By separating them, palliative care can continue to be the safeguard as intended. MAID assessors and providers are in a conflict of interest if providing palliative care at the same time. This does not prevent palliative care physicians from practising MAID. However, they should not be providing palliative care alongside MAID for the same patient.
We urgently need investment in palliative care programs that are administered and funded separately from MAID so that we are not competing for the same resources. Many programs have had to divert their already scarce resources to support MAID services. This has made it even more challenging to provide palliative care when there are dire shortages in palliative care experts from coast to coast and, as a result, patients are even less likely to access palliative care. We need clear data around the quality and accessibility of palliative care and who is providing it for patients who choose MAID. This does not currently exist.
We need funding so that every Canadian has a right to high-quality, comprehensive palliative care. Our palliative care residency programs provide outstanding training experience, graduating highly skilled experts in the field. Together we provide education, guidance and clinical support to clinicians providing primary palliative care. Unfortunately, there are not enough residency positions or specialist palliative care physicians in Canada. We urgently need to invest in increasing funding for training programs across the country in order to graduate more specialist palliative care physicians and in education for all doctors who provide a palliative approach to care.
Please refer to the brief we submitted, as well as the one submitted by our past president, Dr. Leonie Herx, for more information.
Thank you.
6:50 p.m.
The Joint Chair Hon. Yonah Martin
We'll begin our first round of questions with Mr. Cooper for five minutes.
6:50 p.m.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
Thank you very much, Madam Co-Chair.
I am going to direct my questions to Dr. Kaya.
Dr. Kaya, Dr. Downar stated in his testimony that there is really no issue with respect to accessing palliative care services for those who have accessed or are contemplating accessing medical assistance in dying. Would you agree?
6:50 p.m.
Associate Professor of Medicine, University of Toronto, President, Canadian Society of Palliative Care Physicians
No. The data that Dr. Downar refers to and the data that Health Canada reports is the wrong kind of data. It doesn't lend itself to being able to make these sorts of conclusions. I mean, it's self-reporting.
I have the form in front of me. Essentially, the form asks, “Did the patient receive palliative care, yes or no?”, and, “To the best of your knowledge, if the answer is no, was palliative care accessible to the patient, yes or no?”. That's not enough.
We need significantly more data. We need to know much more information. We need to understand the quality of health care being provided and how it impacts palliative care. This sort of health admin data does not do it.
We also need to have national standards to measure the quality of palliative care across the country, with reporting to Accreditation Canada so that health authorities are essentially obligated and held accountable.
Thank you.
6:50 p.m.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
Thank you for that.
You're right, it is limited to self-reporting, which seems to me to be totally inadequate.
Do you agree that MAID providers are in a conflict of interest in terms of submitting data and that the fact that Health Canada simply relies on MAID providers to assess the state of and access to palliative care in Canada seems to be problematic? Would you agree?
6:50 p.m.
Associate Professor of Medicine, University of Toronto, President, Canadian Society of Palliative Care Physicians
Completely: I think it doesn't make any sense for the same person to be doing both. We really definitely need to separate this.
Not only is there a conflict of interest, but there is also conflict within our community: We're competing for the same resources.
Health care nurses in Ontario, Alberta, Quebec and Nova Scotia are doing MAID assessments instead of health care. In Ontario, billing codes are used for MAID assessments. Financial incentives created to encourage family doctors to do primary health care are being given to MAID providers instead. MAID providers can also bill for indirect clinical work, such as travel time and paperwork, yet palliative care providers cannot, so there is a lot of conflict within our community, as well as conflict of interest for MAID providers.
6:50 p.m.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
Can you speak to the difference between primary palliative care and specialist palliative care? Dr. Herx, in her submission, noted that only about 15% of Canadians have access to specialist palliative care.
Maybe, as you do so, could you expand upon the comment you made with regard to the quality of palliative care in Canada, because it's one thing to say there is access, but if the quality doesn't live up to or match up, what good is that access?
6:55 p.m.
Associate Professor of Medicine, University of Toronto, President, Canadian Society of Palliative Care Physicians
Thank you.
Primary palliative care providers are doctors such as family doctors who have training in basic palliative care skills and provide a palliative approach to care to their patients, but some patients have more complex needs and require specialist palliative care teams and specialist palliative care doctors like me, who have more advanced training.
Primary palliative care providers are the backbone of palliative care in this country, and we need to support them. We need to ensure that our undergraduate and postgraduate competencies are adopted by all Canadian medical schools and their residency programs so that all doctors who graduate have the basic skills to provide palliative care, but we don't have enough specialist palliative care physicians in our country either. We urgently need to make sure that we fund more residents to complete the advanced training—like me—and we need to ensure that all of the competencies that we have created are integrated into all of our programs.
In addition to that, the quality that you mentioned—
6:55 p.m.
Associate Professor of Medicine, University of Toronto, President, Canadian Society of Palliative Care Physicians
When it comes to being able to figure out what we have and who is doing what in terms of palliative care, we don't have that information. We have no national standards to benchmark palliative care. These do not exist. We need to create these. We don't have that information at the moment.
6:55 p.m.
Liberal
René Arseneault Liberal Madawaska—Restigouche, NB
Thank you, Madam Chair.
I also thank the witnesses for their testimony.
I will address Dr. Viens first, and then Dr. Downar.
I come from an extremely rural area, far from major urban centres. I'm probably the member of parliament from one of the regions in the country with highest average age. I have had experiences of accompanying people in death, including close family members. My sister died very young, at 46. She had decided not to go to a hospice and to die at home, while receiving nursing care there twice a day.
Other people I knew well died after long illnesses in long-term care facilities. In my region, the smaller long-term care facilities have set up a room for palliative care where the family can come. It's more comfortable for the patient and for the family. Our smaller hospitals have set up palliative care rooms on certain floors.
This leads me to ask the following question. In your presentation, Dr. Viens, you said that there has never been a definition of what palliative care is. Some of the documents that I have seen distinguish between quality palliative care and poor palliative care.
For the patient who is at the end of life, what does this mean? How do we define good palliative care?