Medical Assistance in Dying Committee on April 25th, 2022

[The Joint Chair, Liberal, Marc Garneau]

I call the meeting to order.

Good evening, everyone. Welcome to this meeting of the Special Joint Committee on Medical Assistance in Dying.

I'd like to begin by welcoming members of the committee, witnesses, as well as those watching this meeting on the web.

My name is Marc Garneau, and I am the House of Commons joint chair of this committee. I am joined by the Honourable Yonah Martin, the Senate's joint 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.

You are all familiar with the Board of Internal Economy directives concerning health protocols, so I am not obliged to repeat them. I hope you will all adhere to them.

I would also like to remind members and witnesses to keep their microphones muted, unless recognized by name by the joint chair. A reminder that all comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly.

Interpretation in this videoconference will work like in an in‑person committee meeting. You have the choice, at the bottom of your screen, of either Floor, English or French.

First, there's some very quick committee business.

On Wednesday, April 20, the subcommittee on agenda and procedure met to consider committee business and made some recommendations. Pursuant to House of Commons procedure, the committee must ratify the subcommittee recommendations to put them in force.

Those recommendations are as follows: One, hearings are divided into three one-hour panels; two, written briefs must be received by May 9 and not exceed 1,000 words; three, today's testimony is from practitioners and family members, and the next meeting's theme will be palliative care; and four, themes that we will be dealing with during this committee's meetings are in the following order: palliative care, advance directives, disabilities, mature minors, and mental health, in that order, as I said.

The clerks have distributed report one of the subcommittee on agenda and procedure. Do members have any changes they wish to propose to the report, or are they ready to endorse it?

Does anybody want to make a change?

I don't see anything, so is it the pleasure of the committee to adopt the report?

I see unanimity.

With that, I would like to welcome our witnesses for panel number one and turn it over to Senator Yonah Martin.

[The Joint Chair, Hon. Yonah Martin (British Columbia, C)]

Thank you, Mr. Garneau.

I'd like to introduce our witnesses. We have, appearing as an individual, Dr. Félix Pageau, geriatrician, ethicist and researcher, Université Laval. From the Canadian Association of MAiD Assessors and Providers, we have Dr. Stefanie Green, president, MAiD practitioner, adviser to the B.C. Ministry of Health. From the Canadian Nurses Association, we have Tim Guest, chief executive officer, and Barbara Pesut, principal research chair in palliative and end of life care, University of British Columbia, Okanagan.

I'd like to make a few comments for the benefit of our witnesses.

Before speaking, please wait until I recognize you by name. I remind you 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 it does in an in-person committee meeting. You have the choice at the bottom of your screen of floor, English or French. When you are not speaking, please keep your microphone on mute.

With that, I'd like to welcome our witnesses for this panel. You each have five minutes. We'll begin.

[Luc Thériault, Bloc, Montcalm, QC]

I'm having a technical problem, Mr. Chair.

The sound in the room coming from people attending virtually is much too loud for me to be able to understand the interpretation in the room. Would it be possible to adjust the volumes?

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Okay.

Madam Co-Chair, somebody has said that we need to make an adjustment to the volume of the voices for those in virtual attendance. If we could suspend for a minute, we'll try to adjust that.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

We've made an adjustment.

Hopefully, Monsieur Thériault, it will be acceptable.

Please continue, Co-Chair.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

We'll have our first presentation with Dr. Félix Pageau for five minutes, please.

[Dr. Félix Pageau, Geriatrician, Ethicist and Researcher, Université Laval, As an Individual]

Good evening. Thank you for giving me the opportunity to make this presentation.

I am going to read the main points in my brief.

Some Canadian and Quebec organizations are suggesting that medical assistance in dying for people with major neurocognitive impairments could relieve their suffering. It is also assumed that dementia can be seen as horrible defect, and that this is how a majority of Canadians and Quebeckers would see it. People who are afraid of suffering cognitive impairments will go so far as to wish for their own death. In this short brief, we will show the reasons why it is not ethical to permit the administration of medical assistance in dying, or MAID, for people suffering from dementia, by way of advance medical directives, or AMD.

My argument is threefold: it is practical, it is emotional, and it is supported by the principle of autonomy, put in context.

I will address the practical side first. In terms of health care in Canada, there is a serious shortage of geriatricians. Although some family doctors assess dementias and their consequences, it seems that an expert eye is needed for determining the level of suffering experienced by a person with advanced dementia. It is very difficult to predict the evolution of a cognitive illness with certainty. There are few reliable criteria for assessing pain, mood disorders and existential suffering. Often, when there is no reliable tool in a clinic, an expert opinion is sought. In the case of advanced dementia, there are few experts in the field: geriatricians, geriatric psychiatrists and physicians who work in LTCHs or nursing homes. There are very few of these specialists in Canada.

As well, in the Netherlands, the only country that allows euthanasia by advance request, a majority of those expert physicians do not follow advance medical directives, because the directives are often not clear or are even inconsistent with the reality of care. In practice, therefore, MAID by AMD is not applicable in Canada because of the shortage of specialists who are able to assess people with dementia who will want access to MAID. As well, when access to euthanasia by advance medical directives is allowed, as in the Netherlands, the directives are only very rarely applicable.

In addition, in Quebec, a group of researchers has pointed out that the Quebeckers participating in their study did not really understand what MAID and advance medical directives are. That is not the strongest ethical argument, since the number of geriatricians, geriatric psychiatrists and physicians in long-term care homes could be increased. It would obviously be a major challenge, but it is not impossible in absolute terms. With more research in gerontology, we could establish reliable scales for assessing physical, psychological and existential suffering for patients with advanced dementia. This research still has to be adequately funded.

Finally, if patients were guided by their physician to fill out their AMD, they could write directives that are meaningful in terms of their clinical situation, or nearly so. It is therefore important to analyze other emotional and ethical arguments against MAID for patients with dementia.

I will now talk about the fear of decline. Dementia causes losses of functional autonomy. That means that it causes difficulties in performing household and day‑to‑day tasks. Of course, we understand that people are afraid of dementia because of the mass deaths in LTCHs and nursing homes because of the COVID‑19 pandemic. But that fear is only partially justified. There has been a lack of care and we still need to improve geriatric services. We can train and hire more caregivers in Canada. As well, valuing the work done by family caregivers and adding resources of every nature will be essential.

Apart from the strong desire to improve geriatric care in Canada, other actions are needed in order to reduce the fear of “decline” associated with cognitive losses. We also have to combat the prevailing ageism. That term refers to discrimination against older people through malevolent attitudes, disrespectful behaviour and hurtful words. The medical profession and the prevailing culture are imbued with ageism in the West, and this leads to poor practices. In our opinion, one of them is MAID for patients with advanced dementia. Often, a senior who is in a situation of vulnerability because of cognitive impairment is not considered to be a full member of society because they are not working and are not profitable to society. That is the economic liberal view of human beings, which defines the value of an individual by their capacity to work, and it is wrong. It leads to discrimination and even hatred of persons with dementia. Decline is assumed, because the individual has disabilities, a mental illness, and cognitive impairments associated with dementia. As Canadians, we will have to stand up for vulnerable seniors.

In my professional experience, we sometimes even have to persuade seniors that they still have value in spite of their cognitive deficit or psychiatric illness. Seniors can internalize that hatred of themselves. What I mean by “internalize” is a well-known concept for other forms of discrimination. A person who frequently hears disrespectful remarks aimed at themself will ultimately believe that their supposed defects or problems are real. The same is true for ageism. Even though the person should defend themself, they come to accept and even believe the negative prejudice aimed at them, and to request MAID. However, we have to recognize their individual value, which is not limited to their age, their productivity or the fact that they have no disability.

The human individual has intrinsic value: that is the dignity, the real dignity, the dignity that we can never lose, as the philosopher Immanuel Kant meant it.

[The Joint Chair, Hon. Yonah Martin]

Thank you. We have a time limit of five minutes, and you went a bit over, so I'll try to give a 30-second warning to our next speakers.

We now have Dr. Stefanie Green.

[Dr. Stefanie Green, President, MAID Practitioner, Advisor to BC Ministry of Health, Canadian Association of MAiD Assessors and Providers]

Thank you to the committee for the opportunity to speak with you today.

I'm here as the president of the Canadian Association of MAiD Assessors and Providers, the clinical subject matter experts on MAID in Canada, and as an experienced practitioner.

As my remarks must be limited, I will not dwell on the elements of implementation that have proven both important and well done. Rather, these are fleshed out in my written brief, but I will highlight the most important and I am willing to discuss further if you wish.

The fact that we allow clinician-administered MAID, that MAID is not restricted to terminal illness or imminent death, and that we simultaneously provide very good access to palliative care are all essential to high-quality care for Canadians.

I note that Bill C-7 fixed the unconstitutionality of requiring a reasonably foreseeable natural death, removed the problem-causing 10-day waiting period and added an important waiver of final consent. Data to date suggests that the expected number of Canadians are accessing and receiving MAID, and that those who proceed with MAID are disproportionately advantaged versus socio-economically vulnerable. Well done.

Through my work, I've seen evidence of the distinction between what others might hope to conflate: MAID and suicide. Suicide is almost always a dramatic event, often violent, frequently impulsive, and usually carried out alone or in secrecy. It leaves devastation in its wake for families, for first responders and often for entire communities. By contrast, medical assistance in dying involves a legal framework, a rigorous process, the involvement of multiple health care practitioners and the option to involve many loved ones. I've witnessed the therapeutic effects of merely telling people they're eligible for an assisted death and have seen people live longer than they thought they'd be able to because they had this option. As a colleague so eloquently once stated, suicide implies some form of self-destruction, while assisted dying is a form of self-preservation. They're simply not the same.

This work was especially challenging in the beginning—no training and no guidance documents or standards. CAMAP and early practitioners filled that void, and while we're tremendously proud of all we've accomplished, I quote a colleague from just a few days ago lamenting the lack of practitioners in her region. She said, “The feds need to work with medical and nursing training programs, as well as provincial ministries of health, to address the limited provider/assessor issue, or these changes will be meaningless.” We couldn't agree more. Please read my brief for a review of the factors at play.

The establishment of a two-track system of access to MAID has led some practitioners to withdraw their services due to both a perceived and a real complexity, in process as well as patient population. CAMAP's federally funded Canadian-made curriculum project is an important and positive step toward helping correct the significant lack of standardization of care across the country. It will help set a standard of practice, and should provide both clinicians and the public some measure of confidence. However, a lack of accessible expertise and/or resources for patients continues to hamper practical efforts. Clinicians have begun to experience distress when faced with people who are eligible for MAID but whose suffering is primarily due to a lack of appropriate resources. We are not in any way suggesting MAID be curtailed due to the failings of our society, but we are strenuously suggesting that MAID and community resources for mental health, palliative care, and disability supports be developed and supported in parallel.

With my background in family medicine, I have seen the torment of families who are faced with the unbearable, the birth of a non-viable child or one with terminal illness, and I have journeyed with them. Mature minors in Canada already make their own health care decisions in the denial or acceptance of blood products or with regard to reproductive health choices, as examples. We already have experience in assessing their capacity to make independent decisions. In the catastrophic circumstance of a mature minor with an illness that is causing unbearable suffering, who in very rare cases might ask for access to MAID, to discriminate on the arbitrary basis of age seems indefensible and in fact blatantly cruel. Despite an initial discomfort, you might find a safeguard allowance of MAID for mature minors the most clear-cut of all the issues that you are considering.

I will leave the discussion of advanced requests to others, except to note that lack of availability is the concern I hear about at every presentation I have ever given on the topic of MAID. We would urge this committee to undertake a comprehensive review of past and current reports and recommendations, seek input from frontline clinicians, and make a decision about a matter that the majority of Canadians wish to see resolved.

As my final message, it remains unclear who or what is responsible for access issues. Is it the federal law or the provincial taxpayer-funded yet objecting facilities? As clinicians charged with doing this work, we are still far too few. Help train us. Compensate us and adequately resource our communities, or we will be unable to help people in the way you have trusted us to do.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

With our third presentation, we have Tim Guest.

[Tim Guest, Chief Executive Officer, Canadian Nurses Association]

Thank you, Madam Co-Chair, Mr. Co-Chair, and members of the committee.

We are pleased to be invited to share with you the perspective of nurses on this important study. I'm speaking to you today from Mi'kma'ki, the ancestral and unceded territory of the Mi'kmaq.

My name is Tim Guest, and I'm a registered nurse and the chief executive officer of the Canadian Nurses Association. I'm joined today by Dr. Barbara Pesut, a registered nurse and a principal research chair in palliative and end-of-life care at the University of British Columbia.

CNA is the national and global professional voice of Canadian nursing, and we represent nurses across all 13 provinces and territories. Canada's 440,000 nurses touch the lives of patients at every point of care, and no provider has as much direct interaction with the public where complex human issues arise, such as medical assistance in dying.

Nurses have acquired significant knowledge and experience from nearly six years of MAID in practice and have valuable knowledge to share. In fact, nurses are the most consulted health care professionals when MAID practitioners are seeking to inform their assessments. Today, I will share key findings from a study conducted from Dr. Pesut on nurses' experiences with MAID, as well as some preliminary highlights of consultations conducted by CNA with nurses.

In 2017, Dr. Pesut and her team began a three-year study of Canadian nurses' experiences with MAID. The 59 nurses who were interviewed had diverse opinions about MAID, informed by different levels of engagement with cases. The study highlights how there is great variability in how MAID has been enacted in nurses' workplaces. Nurses emphasized the importance of teamwork in providing high-quality MAID care, although many worked without the benefit of a team.

Nursing work related to MAID is highly complex because of the need for patient-centred care in systems that were not always designed to support such care. Without adequate supports, some nurses chose to limit their involvement in MAID. The study concludes that without accessible palliative care, sufficient providers, a supportive team, practice supports and a context that allowed nurses to have a range of responses to MAID, nurses felt they were legally and morally at risk.

For its part, CNA held consultations in 2020 and 2021, in partnership with the Canadian Nurses Protective Society, with nurses involved in MAID. They provided insightful learnings of their experience, their expert opinion on MAID overall and the three special populations of mental illness as a sole diagnosis, mature minors and advance requests.

Nurses highlighted the lack of access to palliative care in Canada and the importance of scaling it up, as well as other types of services, to ensure that patients are not opting for MAID because of lack of access to acceptable alternatives. For example, we heard that limited access to primary care in rural and remote settings has led to patients directly reaching out to urban centres for MAID services. Furthermore, nurses stress the need to put in place strong safeguards to ensure the appropriate use of MAID for the three special population groups if MAID is expanded. We also heard that practitioners with appropriate expertise within these three groups need to be involved in the MAID process, although we recognize that this also brings concerns of creating barriers and limiting access.

Finally, we urge that if changes to the Criminal Code are brought forward, they are made in a way that safeguards and provisions are clear and include objective criteria. We need to ensure the practitioners can confidently interpret and implement the Criminal Code provisions.

In conclusion, the practice of nursing has been profoundly affected by the availability of MAID in Canada and the moral ambiguities it creates within the world of clinical practice. CNA heard from nurses that MAID can have an emotional toll on the clinicians who are providing it, particularly in areas with scarce resources and a lack of important alternative treatments, such as palliative care.

Thank you. We'll be happy to answer any questions.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

Thank you to all of our witnesses.

We'll go right into round one, starting with Mr. Cooper for five minutes. I'll give a 30-second warning.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Thank you, Madam Co-Chair, and thank you to the witnesses.

I'm going to direct my questions to Dr. Pageau.

Dr. Pageau, the Supreme Court of Canada stated unequivocally three times in Carter that medical assistance in dying may be performed only when a patient clearly consents. You spoke about advance directives. In the face of the pronouncement of the Supreme Court, do you believe that an advance directive can be a true expression of free and informed consent consistent with Carter?

[Dr. Félix Pageau]

Thank you for your question.

That was part of the last section of my brief. I didn't have the time to read it all, because of the stress. I'm sorry.

Regarding autonomy, it must actually be exercised in context. We need the context, we need to know who is involved in the decision, what the environment is, and what the social and health context is.

Imagine that I asked you, three years ago, to make a decision concerning your end of life care. You would probably not have made the same decision as you would now, after the pandemic, after everything that has gone on in long-term care homes. Autonomy has to be exercised with the elements that are present in the decision.

Doing it in advance, we are not really in a context involving the exercise of autonomy. Advance medical directives, while we believe they promote autonomy, serve much more as a decision-making guide, that is, to guide the substituted decision. I am talking here about a substituted consent given by family or a decision that is, at best, much more benevolent and more beneficial for the patient.

So we are in a register that is not really one of autonomy, with advance medical directives, because we are not exercising autonomy in context; it is really autonomy at the time the decision is made. However, at that point, we don't know what is going to happen in the future. None of us is capable of predicting what will happen, especially not in a situation of dementia or evolving cognitive impairment. The context can always change, particularly in the case of geriatric care, as we have seen in recent years.

As geriatricians, we were aware that there were problems in long-term care homes, but the pandemic really revealed them to the public. Imagine if you had made a decision five or ten years ago. Would your decision have changed? That is what I would say about the context.

As well, the person also changes with dementia. The experience of dementia is extremely unsettling. It changes the lives of everyone around the person affected. We are not even talking about the same person anymore. The person has changed. They no longer exercise their autonomy, at that stage. It is very risky to permit medical assistance in dying in a context in which the person is not in a situation of autonomy, and is rather in a situation of substituted consent or even the benevolent decision of the medical or care team. It should not be permitted in that context.

That would be a seriously bad practice. I spoke about ageism, ableism and issues of discrimination and stigmatization associated with mental health problems. Even the decision concerning the use of medical assistance in dying in a dementia situation is very warped by all these components, which may be internalized by the person. In my opinion, this is not genuine autonomy. Autonomy must be exercised in context. The risk of including medical assistance in dying in advance directives is a very big one because, in medical terms, there may also be all sorts of elements that create conflicts of interest, for example the need to free up emergency beds, to allocate resources differently, and so on.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Dr. Pageau, I'm sorry to interrupt, but my time is limited. I will let you continue on with your answer, but when you speak about context, can you speak in the context of dementia and more specifically whether there are elements for someone who is suffering from dementia that are impossible to predict in the context of an advance directive? I think you were talking about that. Can you elaborate a little bit on that?

You mentioned the experience of the Netherlands, which, as I understand it, is one of the few jurisdictions that have advance directives. Were those advance directives being carried out in accordance with the wishes of the patient when the advance directive was brought? Can you speak to those issues?

[Dr. Félix Pageau]

In fact, most of the time, advance medical directives are difficult to apply, given that when they are prepared the person is not necessarily given guidance. The context is then hard to apply. When the requests are made, we often hear much more what the family is telling us.

A study done in Quebec by a group led by Ariane Plaisance shows that people don't know what medical assistance in dying or advance medical directives really are. When they are asked whether they want medical assistance in dying, they understand that we are asking them whether they want good palliative care.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

Next we have Mr. Maloney for five minutes.

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

Thank you, Madam Chair, and thank you to our witnesses.

I'm going to start with Dr. Green.

Dr. Green, I saw you recently on The Fifth Estate when you were talking about MAID. I was interested in some of your comments there.

I'm going to pick up on something you mentioned in your opening remarks. Talking about mental health issues, you distinguish between suicide and MAID. I take it that you're very clearly in the camp of allowing MAID for people who have mental health issues.

[Dr. Stefanie Green]

I'm just going to say that you shouldn't make assumptions.

I'll take the question. Do you want me to answer that first?

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

Yes, please.

I didn't mean to assume. If my interpretation was wrong, please straighten me out.

[Dr. Stefanie Green]

Certainly as the representation of CAMAP, I'm always careful.

Our organization does not advocate MAID in any particular patient population. We advocate the highest level of care under the current law. If our law is to allow mental health patients to access MAID in 2023, then we will do our very best to accommodate that, with the recommendations of the expert panel. We look forward to that.

I don't know that my preference or my beliefs are of import, really.

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

Your opinion is of import, Doctor. I'm curious to know whether you think the legislation that's coming into force in 2023 is correct. Should we allow MAID for people with mental health disorders, in your opinion?

[Dr. Stefanie Green]

Well, to be honest, it's a legal question. I think it's discriminatory to tell people they're not allowed to access MAID based on a diagnosis.

I understand that decision. I'm in favour of following the decision of the House of Commons and the Senate. I'll do my best to provide the highest level of care for those patients. Certainly I'm not going to withdraw my services because of that.

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

Thank you, Doctor. I respect that. I'm a lawyer, so I will follow the law too, but I often rely on the advice of medical practitioners in determining what's right and what's wrong. I think that's why we're here.

You are somebody who has extensive experience in this area. I think it's a fair question to ask you whether or not you would be supportive of the law that's coming into force in 2023. If you're not comfortable answering that question, I'll move on.