Evidence of meeting #21 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 disease.
A video is available from Parliament.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
Thank you, Madam Chair.
Good morning, everyone.
Welcome, Ms. Guillemette. Congratulations on your election in Roberval electoral district. We followed this election with great interest, as you can imagine.
Because my time is short, I am going to get directly to the point.
Obviously, you are correct to say that Quebec leads the way on a number of issues, including end-of-life care. I was in the government at the time, when the Act respecting end-of-life care was enacted.
The Joint Chair Hon. Yonah Martin
Excuse me, Madame Vien, but Dr. Buchman is now here. Would you like to hear the witness first? That might be helpful.
Conservative
The Joint Chair Hon. Yonah Martin
Right, thank you.
Dr. Buchman, thank you for joining us. I hope you're ready to go into your testimony. You will 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
My apologies. There were serious technical problems, but I was on the whole time.
Good morning and thank you for asking me to appear before you today.
My name is Sandy Buchman. I'm a palliative care physician and the chair and medical director of the Freeman Centre for the Advancement of Palliative Care at North York General Hospital in Toronto. I'm also the former president of the Canadian Medical Association. I spend much of my time providing home-based palliative care, and for a number of years I have provided care to those experiencing homelessness. I am also a MAID assessor and provider.
My comments today may be appreciated through the lens of three important areas for both palliative care and MAID: access, equity and compassion. I will also share some of my concerns regarding current and future states of practising palliative care in MAID.
In Canada, we have several exemplary palliative care frameworks, such as Health Canada's 2018 framework on palliative care in Canada, as well as many province-specific documents. They all recommend innovative and cost-effective ways to improve equitable access and save vast amounts of money in adopting a palliative approach to care when indicated. However, despite dedicated professionals and volunteers having worked so hard for so many years to create these reports, most of these ideas and plans never see the light of day—certainly not in the world in which I work. Why is that? We rarely see the dollars to fund these evidence-based recommendations.
Let me share a personal, concrete example. About seven years ago, I co-founded a new hospice residence in our community of North York called Neshama Hospice. Best practice suggests 10 to 12 end-of-life beds for 100,000 population. In North York, we have a population of about a million and should therefore have 100 to 120 beds. I will tell you that there are zero palliative care unit beds and zero hospice residence beds in our area. We have raised $18 million so far for our new hospice, but now with inflation, several million more have to be raised. We are to receive $2 million in provincial government funding, which will amount to less than 10% of our costs. Operational dollars will not make up even 50% of our costs. The majority of Canada's patients at end of life—up to 70% in many areas—die expensively in hospital because of inadequate funding of community supports like hospice or home care.
Why is it that essential, high-quality, appropriate and very cost-effective palliative care is mostly charitable? If we want to improve access, equity and compassionate care for Canadians, I believe the federal government has an important role to play in setting national standards and providing funding, through the Canada health transfer, to be directed to palliative and hospice care, enacting its own framework. It's beyond time to walk the talk.
The average expected life span for those entering long-term care is only 18 months. If that does not require a palliative approach to care, I'm not sure what does, yet very few long-term care facilities practise such an approach. This often results in many of our elderly and frail citizens being sent to emergency rooms when their clinical conditions worsen. They are admitted to an acute care bed in hospital where they may remain for weeks or months, not being able to return to their home facility as they decondition so quickly.
A recent C.D. Howe report showed that about 40% of these patients have less than a 90-day prognosis. For a moment, please recognize that if we had more options for care in the community, we could do so much more to relieve our collapsing health care system. This alone would make a significant dent in freeing up acute care beds, and would impact the current capacity challenges and wait times in our hospital system.
Recently, stories have appeared in the media about people with a chronic disease or disability who lack necessary social supports and resources to live a quality of life they deem worth living. Thus, they request MAID, usually through track two. I have every sympathy for these individuals and believe that many are suffering intolerably. Although I've heard about a few of these tragic cases, in reality they are also relatively few in number. Indeed, many say they don't really want MAID but would rather die than continue to live in their impoverished circumstances. This is the basis of their intolerable suffering.
Critics of MAID legislation cite that it is easier to access MAID than adequate health, social and financial supports, and indeed that may be true. Their proposed solution is to toughen up our MAID laws. However, the problem is not the MAID legislation per se, as a person still has to meet all the eligibility criteria. I believe a lack of adequate and appropriate housing, financial supports, access to timely and consistent addiction, mental health and rehabilitation services and access to palliative care are really at the root of their requests. Inadequate and insufficient health, social and financial supports drive death. They do not drive MAID. If we want to prevent needless deaths, let's adequately fund social support and health services. More people will live longer and better lives.
Finally, there is one issue I'd like to highlight with respect to current MAID legislation.
The waiver of final consent, meant to ensure that an eligible patient's wishes for MAID are honoured if they lose capacity, has been an extremely valuable amendment to our MAID laws, but it may also have a flaw. There have been anecdotal reports of this waiver being applied to procedures months later, and even two to three years into the future, after the patient has been found eligible but may not want MAID just yet. It has become a de facto kind of advance consent, in my humble opinion. This was not the intention of this amendment, of course. I bring it to the committee's attention as I think it needs to be explored and studied further.
Thank you for this opportunity to appear before you today to share my perspectives on palliative care and MAID.
The Joint Chair Hon. Yonah Martin
Thank you, Dr. Buchman.
I will return to Madame Vien. I'll restart so that you have five minutes.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
Ms. Guillemette, should the Government of Canada move forward regarding advance requests for medical assistance in dying?
Member for Roberval, Government of Quebec
We are preparing to reintroduce our bill, which we hope to have passed in Quebec. The conclusions in the report we produced at the Select Committee on the Evolution of the Act respecting end-of-life care, which I chaired, were unanimous. We are therefore hopeful that Quebec will pass this bill.
We have always led the way, in Quebec. We hope not to be at odds with Canada, but I will leave it to the federal government to do its job.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
You used the word that sums up the discussion. If Quebec did move forward in this regard, but not the federal government, how could we live in two parallel worlds, legally speaking?
What is your opinion on that?
Member for Roberval, Government of Quebec
We shall see how the respective governments of Quebec and Canada handle the situation at that time. For the moment, we too have no law. It is just a bill.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
Right.
You introduced the bill in May, I believe, but you say you did not have time to move forward.
Mr. Dubé, who has been reappointed as minister, is to reintroduce the bill.
Have you given yourselves a deadline for passing the bill?
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
Earlier, you referred to neurological disabilities. They were included in the bill, but ultimately they were removed by Mr. Dubé.
Do you want to add that aspect back, since you will have more time to discuss it?
Member for Roberval, Government of Quebec
In fact, the study of neuromotor disabilities was not part of our committee's mandate, so we did not study that issue. That is why the minister removed it from the legislation. I do not know whether there will be other proceedings that will make it possible to add that aspect back to the bill. We have not yet introduced the new bill.
The previous bill was introduced in May, and when we saw that we would not have time to pass it before the end of the parliamentary session, all parties agreed to bring it back. Everyone agreed that the bill had to be brought back quickly.
We do not know whether it will take the same form or whether amendments will be made to it. We will have to wait for the bill to be introduced to know.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
Thank you, Ms. Guillemette.
At the Special Joint Committee on Medical Assistance in Dying, we also wonder about requests for medical assistance in dying when the only condition cited is a mental disorder. In Quebec, you decided not to move forward on that point, so I feel obliged to take the opportunity your presence here offers, to ask you some questions about that.
You said that you decided not to move forward because you had not felt any consensus among the public.
How did you measure that, apart from the fact that you conducted a survey and consulted 80 groups in the medical field?
Why did you not act on that, and what would you do if we were to move in that direction?
Member for Roberval, Government of Quebec
Regarding the technical aspect, I would note that we did consult 80 groups, organizations of health professionals and doctors. As we made clear, mental health is too important a subject for there not to be consensus in that regard. We did not perceive that there was a social consensus on moving in that direction.
At present, it is too difficult to determine whether there is an irreversible or incurable illness. However, the subject is really important. We decided that we would not make recommendations in that regard for the moment, and that we would see whether, in future, a new committee would study only the question of requests for medical assistance in dying on the sole ground of a mental health disorder. Given the data we had and the lack of social consensus, we believed it was too difficult to expand medical assistance in dying to include mental disorders as the sole ground relied on.
A person who has a mental disorder and also suffers from another illness may still be eligible for medical assistance in dying. The person's request will not necessarily be refused because they have a mental health disorder. It will be refused if the sole ground for the request is a mental health disorder.
On the subject of the legislation and consistency between the federal and provincial positions, we shall see how things turn out on the federal side. There will certainly be adjustments.
The Joint Chair Hon. Yonah Martin
Thank you.
Next we have Mr. Arseneault. You will have the floor for five minutes.
Liberal
René Arseneault Liberal Madawaska—Restigouche, NB
Thank you, Madam Chair.
I would like to thank our witnesses. It is always nice to hear your testimony, which helps us a lot in moving ahead on this issue.
I would first like to address Dr. Gauthier.
Dr. Gauthier, I want to thank you for your presentation. It is the shortest one I have heard since I began sitting on this committee, and yet it was full of information. As a legislator, I find your comments particularly useful in connection with advance requests for medical assistance in dying, a subject that we will be addressing with this second group of witnesses.
If I understood correctly, you support the idea of opening up medical assistance in dying to advance requests. You specialize in Alzheimer disease. You talked about the various stages that can be determined and based on which medical assistance in dying could be given.
My question is twofold.
At what point do you think a person can make an advance request? You talked about patients or people you know who are afraid of being struck by that disease because members of their family suffer from it.
To summarize, do you support advance requests by persons who do not have symptoms of Alzheimer disease?
Emeritus Professor, As an Individual
At present, the consensus is that a diagnosis must already have been made. With that said, it could be a very early stage of the disease. A person could not request medical assistance in dying based on a fear of eventually having a certain disease.
On the other hand, it is possible to document their preferences in writing, even if no disease has yet been declared. We are already doing that when we complete a protection mandate to facilitate our decisions in the event of incapacity.
A person can use a special clause to tell their designated representative whether or not they want extraordinary measures to be performed in the event of a stroke, for example, if there is no hope of recovery. Could we include medical assistance in dying in those wishes? I don't know.
To answer your question specifically, I will say that we have to wait for a precise diagnosis.
Liberal
René Arseneault Liberal Madawaska—Restigouche, NB
Suppose that I receive a precise diagnosis of Alzheimer disease or a form of dementia and I sign a document stating my desire to receive medical assistance in dying once the disease has reached a particular stage.
Can you define what the determining factor would be, for a legislator, in order for a stage to be recognized by lawyers and by the courts and doctors?
That is where the line has to be drawn.
Emeritus Professor, As an Individual
That is a very good question. I have tried to make it a bit operational, for the committee's needs.
At the first onset of Alzheimer disease or some type of dementia, people are competent. That is the time for them to put their affairs in order. That period may last one year or two years or three years. As long as they have not been declared incapable, they may express their wishes and make a request at that point for medical assistance in dying if they want it and they are not suffering from depression, in particular.
At the other extreme, there is the terminal phase, when there is really no hope that the persons will live more than a certain number of months. I believe that everyone states in their wishes that they do not want to continue to live if they are in the terminal phase of a neurological disease.
It is the intermediate stage that could present a problem. A person has been declared incapable but still enjoys a degree of mobility and still interacts with the environment to a certain point. That period lasts an average of two to three years. The stage of incapacity has been recognized, but the person has not yet reached the terminal phase in a recognized way.
Liberal
René Arseneault Liberal Madawaska—Restigouche, NB
Right.
I'm sorry to interrupt you, but I do not have a lot of time left.
What is the stage of incapacity recognized in your profession?
Emeritus Professor, As an Individual
It is when a judge has agreed to homologate a mandate in the case of incapacity based on a medical assessment report, supported by a psychosocial assessment report. There is no change being made to the present legislation for homologating a mandate in the case of incapacity.