Medical Assistance in Dying Committee on Oct. 28th, 2022

[The Joint Chair, Liberal, Marc Garneau]

Good morning. Welcome to meeting No. 23 of the Special Joint Committee on Medical Assistance in Dying. I would like to begin by welcoming members of the committee as well as the witnesses and those watching this meeting on the web.

My name is Marc Garneau. I am the House of Commons joint chair of this committee. I'm joined this morning by the Honourable Marie-Françoise Mégie, the Senate's vice-chair.

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.

I have just a few administrative remarks.

I'd 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. This is important for the interpreters. Interpretation in this video conference will work as in an in-person committee meeting. You have the choice, at the bottom of your screen, under the globe, where it says “interpretation”, of floor, English or French.

With that, I would like to welcome our witnesses for panel one, who are here to discuss advance requests.

We have Dr. Alice Maria Chung, who is a clinical associate professor, by video conference.

We have with us Dr. Judes Poirier, full professor of medicine and psychiatry at the Centre for Studies in the Prevention of Alzheimer's Disease at McGill University. He will be participating in the meeting by videoconference.

We have Dr. Ross Upshur, professor at the Dalla Lana School of Public Health and the department of family and community medicine of the University of Toronto, also by video conference.

Thank you all for joining us.

We'll begin with opening remarks by Dr. Chung, followed by Dr. Poirier, and then Dr. Upshur.

Dr. Chung, you have five minutes. The floor is yours.

[Dr. Alice Maria Chung, Clinical Associate Professor, As an Individual]

Thank you very much.

Good morning from Spain.

I'd also like to thank the IT support people for making this—

[Luc Thériault, Bloc, Montcalm, QC]

Excuse me, Mr. Chair.

[The Joint Chair, Liberal, Marc Garneau]

I'm sorry. Just a moment, please.

You have the floor, Mr. Thériault.

[Luc Thériault, Bloc, Montcalm, QC]

Could we adjust the volume in the room? Otherwise, I absolutely have to turn the volume up to the maximum, which is not very good for my ears.

[The Joint Chair, Liberal, Marc Garneau]

Of course, I understand.

Mr. Clerk, can we lower the sound level in the committee room so that Mr. Thériault can hear the translation on his headset?

[The Joint Clerk of the Committee, Mr. Wassim Bouanani]

Yes, Mr. Chair, it's done.

[The Joint Chair, Liberal, Marc Garneau]

Okay. Thank you very much.

Dr. Chung, please resume.

[Dr. Alice Maria Chung]

Thank you to the IT support people, who have made this less stressful for me.

Thank you to the committee for allowing me the opportunity to address my concerns regarding advance directives for MAID in people living with dementia.

I am a geriatric medicine physician who has been looking after frail elderly people since 1989, over 30 years now. I do home visits three half-days a week for housebound seniors and I see elderly patients in hospital and in clinic. I am also the daughter caregiver for my 97-year-old father. I also helped him care for my mother, who passed away with severe dementia after living gracefully and with dignity until the age of 96. I am also involved in the care of a couple of my father's relatives who are also in their late eighties and nineties. I am professionally and personally committed to caring for those living with dementia at all stages, from early to late.

I am a firm believer in patient autonomy. If a patient is able to comprehend information on a treatment versus other options, and is able to come to a decision and communicate that decision, their wishes should be honoured, no matter how frail they may be. If they are capable of decision-making, I will support their decision. They should also, however, be allowed to withdraw consent at any time, especially when the effects may be life-altering. I teach capacity assessments to medical students, residents and practising physicians so that they will be able to identify whether a patient is capable of medical decision-making.

The issues with advance directives for MAID are several-fold. First, we are not able to predict with accuracy what our own quality of life will be in the future, let alone if we are also living with a chronic medical illness. What right does the 60- or 70-year-old you have to judge the quality of life of the 80- or 90-year-old you? Patients with chronic illnesses can often adapt to their altered circumstances and develop a new equilibrium and sense of self, and feel that their quality of life is actually quite good. The medical literature has demonstrated this to be true. I happen to have seen it in my years of practice as well.

Second, with end-stage dementia, there would be absolutely no chance to withdraw consent, which is also essential to informed consent. Someone else, a health care worker who may not know the patient, or a caregiver, would have to decide when it's time for MAID to proceed. Patients living with dementia face prejudice due to not only ableism but also ageism. It has also been shown that caregivers may not be good judges of the quality of life of their loved ones with dementia. Caregiver burden often influences the assessment by caregivers in terms of their patients' quality of life.

Finally, there is the risk that allowing advance directives for patients with dementia could lead to abuse. Patients already can face undue influence to do the right thing and not be a burden to society or to their loved ones. I have had multiple patients who have been heartbroken at having been coerced into selling their home and moving into a facility because of family pressures to not be a burden. I cannot currently protect vulnerable elderly from financial abuse with the current safeguards. I do not believe safeguards could be crafted to adequately protect them from undue influence to accept or request MAID.

In summary, I am opposed to advance directives for MAID, as people cannot predict with accuracy how they would feel in a future situation they have not yet experienced; there is no ability to withdraw consent; even caregivers of those with dementia, who know them well, have difficulty assessing their quality of life; and finally, these directives may open up another avenue of potential abuse of vulnerable elderly.

Thank you very much for listening.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Dr. Chung.

I now give the floor to Dr. Poirier for five minutes.

[Dr. Jude Poirier, Full professor of Medicine and Psychiatry, McGill University, Centre for Studies in the Prevention of Alzheimer’s Disease, As an Individual]

Thank you.

Hello to everyone who is listening this morning.

I would like to thank the joint chairs and members of the committee for this invitation. I am both very happy and honoured to have been invited to participate in the discussion with the members of this very important committee.

This morning, I am essentially wearing two separate hats.

First, I have been a researcher specializing in the causes and treatments of Alzheimer's disease for 35 years and the co-discoverer of the principal gene associated with the common form of Alzheimer's disease. I am perfectly familiar with the genetic and environmental risk factors that hide behind the disease. We will be able to talk about that at greater length if you wish, during the question period.

Second, I am the child of two parents who had Alzheimer's disease for whom I was the caregiver, first with my father and then with my mother. I followed the usual path of the fighter. I experienced the progress of the disease at every stage, up to the very end, very closely and very emotionally, and some of the fights were painful.

Although I have worked in a psychiatric hospital for 35 years and I am a full professor of psychiatry at McGill University, this morning I am talking only about Alzheimer's disease. Mental illnesses are another and, in my opinion, very different situation.

What is Alzheimer's disease in 2022?

It is, first and foremost, an incurable and irreversible disease for which the primary risk factors are genetics and age. They are both factors that it is unfortunately impossible to mitigate or manipulate with medication.

Alzheimer's disease exists in two main forms. The first is called the early-onset form; it is genetic and aggressive, and we have identified several causative genes. I stress the term "causative". It means that we know whether and when these individuals will have the disease. This small group of families represents about two to three per cent of all cases. That is not a lot, but when this form strikes a particular family, one out of every two children will become ill in each generation. If there are eight children, four of them will have the disease.

The other form of Alzheimer's disease is the sporadic form. This is probably the one you are most familiar with. You have certainly known someone, at some point in your life, who was affected by the sporadic form. This form has a genetic component that represents about 60 per cent of the risk. I am not talking about causative genes; these are risk factor genes. Unlike the familial form, it is not causative genes that are involved, it is risk genes. This risk gene will combine with factors described as environmental or lifestyle-related. They include cardiovascular problems such as hypertension, diabetes, uncontrolled cholesterol, obesity, and even uncontrolled sleep disorders. So it is the combination of genes and cardiovascular or lifestyle-related factors that trigger Alzheimer disease.

It is a disease that will last eight to 12 years, on average. At the very end, a person will gradually lose their physical and mental abilities and experience difficulty performing the activities of everyday life. In its most serious period, the immune system will deteriorate to the point that it is infections such as pneumonia or bronchopneumonia that kill the person. Alzheimer's disease does not kill the person, but it leaves the person in such a weak condition that it is the infections that kill them.

In the last two years, COVID-19 is what has killed people with Alzheimer's disease in nursing homes. It wasn't pneumonia.

That brings me to the second part of my presentation, which is an overview of the situation in the European countries that have included Alzheimer's disease in the list of diseases that may be relied on in connection with medical assistance in dying.

The Netherlands enacted a medical assistance law in 2005, but it was difficult to apply in practice for a decade in connection with mental illnesses, in particular in the case of Alzheimer's disease.

In 2018, the Royal Dutch Medical Association finally established very clear guidelines, which were confirmed in April 2021 by the Netherlands Supreme Court and allow the use of advance directives in connection specifically with Alzheimer's disease.

I am going to give you some figures that surprised me a little myself, but at the same time were reassuring. In 2018, 6,126 patients requested medical assistance in dying in the Netherlands. Of that number, 144 patients made a request when they had a diagnosis of Alzheimer's disease in the mild or moderate phase, that is, in the phase of the disease when it is still possible to make an informed judgment and give consent.

So 144 of the 6,000 or so applicants were given permission to receive assistance. Of that group, only two used advance directives, that is, directives that had been formally put in writing and that their families activated to respect the person's wishes. So really very few people went this route in a situation involving Alzheimer's disease.

In Belgium, people who suffer from Alzheimer's disease represented four per cent of the people who requested this assistance. Unfortunately, the data does not differentiate between advance medical directives and other requests.

In Switzerland, people with mental or behavioural disorders, including Alzheimer, represented about three per cent of the people who requested medical assistance in dying. The figures do not distinguish between the two types of requests.

To conclude, I would like to remind you that a person does not die of Alzheimer's disease, but it certainly creates serious problems for dying with dignity. Alzheimer puts you in a severe state of physical deterioration to the point that you become vulnerable to any infection there might be. COVID-19, recently, was the one that took many Alzheimer sufferers from us.

I would remind you that the idea of psychological pain is also central to this discussion. That pain is not experienced only at the time of diagnosis; it is present throughout the illness, particularly in the second part.

I will stop here and wait for your questions.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Poirier.

Dr. Upshur, you have five minutes.

[Dr. Ross Upshur, Professor, Dalla Lana School of Public Health and Department of Family and Community Medicine, University of Toronto, As an Individual]

Good morning, honourable chairs and committee members. Thank you for the privilege of appearing before the committee today. I commend the committee for taking on the formidable tasks that are before you.

I'm a professor in the department of family and community medicine at the Dalla Lana School of Public Health at the University of Toronto, where I am also the Dalla Lana chair in clinical public health and division head of clinical public health. Additionally, I'm the associate director of the Lunenfeld-Tanenbaum Research Institute, scientific director of the Bridgepoint Collaboratory for Research and Innovation, and a staff physician at Hennick Bridgepoint Hospital, Sinai Health, in Toronto.

I've been in clinical practice for over 30 years, with a particular clinical and research interest in the care of older adults. I served on the Royal Society of Canada's expert panel on end-of-life decision-making in 2011. I was also a member of the working group on the Council of Canadian Academies' expert panel on advance requests for MAID. I'm a past chair of the Royal College of Physicians and Surgeons of Canada's ethics committee. I'm the current chair of the College of Family Physicians of Canada's ethics committee. From 2006 to 2011, I was the director of the University of Toronto's joint centre for bioethics.

The comments made today reflect my views alone and not those of any of the organizations in which I am employed or provide service for.

I recognize that public opinion polls and survey data indicate strong support for advance requests in medical assistance in dying. However, I wish to raise the following points.

As noted, I was a member of the CCA working group for advance requests in MAID. I'd like to commend the CCA and its chief executive officer and president, Dr. Eric Meslin, and the chair of our committee, Dr. Jennifer Gibson, and the members for their exemplary work. It was an illuminating experience. The process was carried out with immense rigour and thoroughness, and was as inclusive as possible in soliciting views and collecting and reviewing the evidence. It is, to my knowledge, the most comprehensive examination of the issue in existence. I do hope that members of this committee have read this report with care. As I am a signatory to the report, most of what I think is the case on the topic is in the report.

The working group represented the continuum of perspectives on the acceptability of MAID itself, let alone advance requests. There was, however, unanimity on the following points. The issues involved in advance requests for MAID are immensely complex, they are of profound importance and significance, and there are large knowledge gaps and uncertainties.

I'd like to quote from the concluding section of the report, which says, “the main issue with [advance directives] for MAID is the uncertainty faced by those responsible for following the request when it comes to gauging...whether the patient desires an assisted death.” The responsibility for this decision will fall upon a third party, most likely a family member who has been designated as the proxy or substitute decision-maker, and not the physician. It's very distinct from the regime that is in place in the Netherlands.

If this becomes the case, then it is essential that the knowledge gaps identified in our report be filled as expeditiously as possible in order for there to be evidence-informed supports for substitute decision-makers, clinicians and others, because the circle of individuals around MAID is quite extensive. However, we must do this recognizing the inadequacy of current support for substitute decision-makers and the lack of uptake of advance directives and advance care planning in day-to-day practice outside the context of MAID. Much work remains to be done.

There is also considerable uncertainty around our understanding of such commonly employed concepts as suffering, and extensive clinical uncertainty as to how this is best assessed in even competent populations. This also raises questions of allocation of resources and whether sufficient resources will be devoted to ensuring that the necessary supports for substitute decision-makers and clinicians are provided, that safeguards are in place, and that there is a continuous monitoring and evaluation of any regimen put in place for advance requests for medical assistance in dying. The question of whether new resources should be brought to bear on this particular dimension of MAID when we have large extant gaps in end-of-life care is one I cannot answer but believe requires close scrutiny and debate.

Regardless of how we proceed, tough choices must be made. To paraphrase 19th century philosopher Georg Hegel, tragedy does not consist in choices between right and wrong, but between two rights.

I thank you again for the opportunity to appear before the committee. I look forward to answering your questions to the best of my ability.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Dr. Upshur.

I will now turn it over to my co-chair, Senator Mégie.

[The Joint Chair, Hon. Marie-Françoise Mégie (Senator, Quebec (Rougemont), ISG)]

Thank you, Mr. Chair.

We will move on to the first round of questions.

Mr. Barrette, you will have the floor first.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Thank you, Madam Chair, and thank you to the witnesses for being here today.

My first question is for Dr. Chung.

You talked about the primary caregivers of patients. I'm wondering if you can share with us why, in your opinion, primary caregivers of patients living with dementia may not always be the best judge of their loved ones' quality of life when they know them most.

[Dr. Alice Maria Chung]

Thank you very much for that question.

It does seem counterintuitive that the person who is spending most of his or her time with that patient would not be the one who necessarily knows the patient the best, but this has been shown in research.

One study that I referenced in my original statement submission was a geriatric psychiatry paper where 91 people with mild to moderate dementia were paired with their primary caregivers, most of whom were spouses or lived with the patient. They were asked to fill out a quality-of-life survey. The same quality-of-life questionnaire was given to the patients and the caregivers. Because the patients were still mild to moderate, they were able to answer questions.

There were five domains in this. One was self-esteem or how they feel about themselves as a person. Another was positive affect, which is whether they are mostly happy. Another was negative affect: Did they have anxiety, depression, sadness or guilt? Also, what was their feeling of belonging? Did they feel that they had a part in society? Did they feel that they were a part of a cadre of people who cared for them? Finally, it was the sense of aesthetics, which referred to their ability to attain pleasure in life.

They found that the agreement between the patients filling out the questionnaire and their caregivers was not very good.

Another thing they looked at was caregiver burden. They asked the caregiver how much stress they felt with their job. They also did a survey of how dependent the patients were. Over 50% of the patients needed hands-on care at that point and 44% of them had behavioural issues, such as paranoia or some aggressive tendencies. The thing that correlated the best with the disagreement was caregiver burden. If the caregiver felt extreme burden in their care, they may have been projecting their feelings onto the quality of life of the patient, whereas the patient may have felt that their quality of life was actually quite good.

I hope that answers your question.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Yes, thank you.

In cases of patients living with dementia, what are the issues in determining capacity to make personal or medical decisions such as MAID?

[Dr. Alice Maria Chung]

I have not done any capacity assessments for MAID, but I do capacity assessments for finances, personal decision-making and medical decision-making all the time. A lot of my patients are frail and are living with issues of potential financial abuse, as well as maybe making decisions that their family doesn't agree with. For instance, they may want to stay at home despite the fact that they're falling or they may not be eating as well. They really are able to come to a decision and say that this is where they want to be. Their decisions need to be honoured.

They obviously have short-term memory, so when you're trying to give them the pros and cons, they often have difficulty holding the information in their brain long enough to come to a decision. They have some impairment in judgment and insight, especially if the frontal parts of their brain are affected.

They occasionally have emotional lability. For instance, with a toddler, their frontal brain is not yet mature and there are these swings of emotions where in one moment they're in the depths of despair and in a minute they're laughing and happy. It can switch quite quickly. Some elderly people, especially with fronto-temporal dementia or people who have strokes in the frontal part of their brain, will have this as a problem. They're also easily fatigued, so a lot of times they cannot have an assessment in one go and you need to have multiple assessments.

Finally, they are often completely dependent on their caregiver. If someone is living with them, they're dependent on the caregiver not only for hands-on care, but also for decision-making to help them in life. This leaves them open to the possibility of undue influence. Because they have someone they are potentially insulting or going to make upset by going against their wishes, they may feel obliged to agree with them.

That's what I see a lot of times in people who tell me they want to live in their own home. They are capable, but because they don't want to make waves and they want to keep their family happy, they end up deciding to move into care. It's legal. They made the decision and they were capable at the time, but it is still very heartbreaking because that is not how they wanted to spend the end of their life.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Thank you.

[Dr. Alice Maria Chung]

Thank you very much.

[The Joint Chair, Hon. Marie-Françoise Mégie]

Thank you, Mr. Barrett.

Ms. Brière, it is your turn.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

Thank you, Madam Chair.

I would like to welcome all the witnesses and thank them for being with us.

My question is for Dr. Poirier.

We are in a time of constant change. We have to adopt a position taking into account the interaction between the concepts of autonomy, suffering and vulnerability. You told us that you had two parents who had a diagnosis of Alzheimer. My mother-in-law is currently hospitalized in a nursing home; she sleeps about 23 hours out of 24. She is restrained in a geriatric chair.

You spoke a lot about Alzheimer; could advance directives also be possible for other neurodegenerative conditions such as frontal lobe dementia, for example?

[Dr. Jude Poirier]

Yes. I believe it can, certainly, in cases where the progress of the disease can be measured. I can tell you we are doing it in research systematically.

You know that to be able to prescribe a medication for a patient in Quebec or in British Columbia, the patient must have scored at least 21 out of 30. Then the government will pay. However, if you fall below 10, it will no longer pay. So there are scales. There is a way of quantifying these changes. My short answer is yes.

To add a bit of context, I also work, at the prevention centre I direct, with 400 children of people with Alzheimer's disease who are genetically at high risk of having the disease. The discussion we are having this morning is one I have had with them for a decade. Those situations are very relevant to what you have just raised.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

How can we properly oversee advance consent?

Clearly the advance request would be signed when the person is in possession of all their faculties, just as advance medical directives require in Quebec.

How can we make sure that the person has all the necessary information, that they understand the impact, the consequences, of giving that kind of consent?

The second element of my question is this: at what point would the advance consent take effect?