Medical Assistance in Dying Committee on May 5th, 2022

[The Joint Chair, Liberal, Marc Garneau]

I will now call this meeting to order.

I would like to welcome our witnesses for this evening's session as we continue our statutory review of the provisions to the Criminal Code relating to medical assistance in dying and their application.

Tonight we have the pleasure in the first panel of having Dr. Raphael Cohen-Almagor, professor of politics at the University of Hull, as well as Mr. Pierre Deschamps, who is a lawyer and ethicist. We also have two people from Dying with Dignity Canada: the Hon. James Cowan, member of the board of directors and a former Canadian senator, and Helen Long, chief executive officer.

There are a few quick rules.

First of all, I know everyone appreciates the health measures that were put in place during the COVID‑19 pandemic. I would ask all those in the committee room to adhere to those rules.

With respect to our members and panellists this evening, there are a few small details. You may speak in the official language of your choice—English or French—and we have translation. If there are problems for you in hearing the translation, please let us know. We'll suspend and fix the problem before we get going.

Second, please don't speak until I give you the authorization to speak. If you wish to draw my attention to something, there is the “raise hand” feature on Zoom. You can use that. When you speak, please speak slowly and clearly.

The way we'll proceed is we will begin the evening with the three panellists each speaking for five minutes, and then we will follow that with a question period.

We'll get the show under way. Dr. Cohen-Almagor, if you are ready, the microphone is yours for the next five minutes.

[Dr. Raphael Cohen-Almagor, Professor of Politics, University of Hull, As an Individual]

Good afternoon, good evening. Thank you for your invitation to present my views on end of life today.

My name is Raphael Cohen-Almagor. For more than 30 years, I've been studying end-of-life concerns.

Ethically speaking, I think patients should be able to receive medical aid to end their lives. This should be done in the most attentive and careful way.

I restrict my reasoning to autonomous patients who are able to decide for themselves. Incompetent patients are, by definition, not autonomous. As they're unable to decide for themselves, the road for potential abuse is wider.

During the past decades I served as a consultant to several legislatures on end-of-life treatment. Inter alia, I served on the public committee that legislated the Dying Patient Law in Israel. I submitted to you the specific section of the law that addresses advance directives.

Advance directives are problematic. They're often made without the opportunities for full informed consent. On what basis did a patient make the decision that she would not want to be treated? A decision not to receive treatment should be based on a clear understanding of the situation. It is essential that a patient understands the disorder, the available alternatives and her chances and risks. This can be rather complicated when the physicians themselves do not have a clear picture about the condition and cannot provide a reliable prognosis.

My research in nine countries—the United Kingdom, Canada, Israel, the United States, Australia, New Zealand, the Netherlands, Belgium and Switzerland—shows that there have been a number of cases in which a physician playing God has abused their position of authority to make decisions that are not in the patient's best interests. Also, end-of-life care is often compromised due to economic considerations and a shortage of resources.

Research has evidence that advance directives are often made without an opportunity for full informed consent. For example, in the United States, advance directives might be utilized by medics against the patient's best interests to save costly resources. The research shows that advance directives have not fulfilled their promise of facilitating decisions about end-of-life care for incompetent patients. Many legal requirements and restrictions concerning advance directives are counterproductive. Despite their benevolent intentions, they have created unintended negative consequences against patients' wishes.

Let us examine the highly problematic case of dementia. As you may know, medicine at this point has not fully deciphered the mysteries of the brain. We know a lot about the heart, about the lungs, about the kidneys and about other organs, but we are yet to fully understand the brain. The human brain is struggling to understand the brain. Therefore, caution is a must.

In the first stage of dementia, patients tend to suffer from fears of becoming a burden on loved ones and on their medical care, as well as losing their independence and dignity. The suffering is mental. The suffering can be alleviated with dualistic palliative care that addresses the patient's mental, psychological, physical and social needs with assurances that the patients have an intrinsic value notwithstanding their deteriorating current condition, with family solidarity and with compassion and respect for the patients who are now at a junction where they need attention more than ever before.

As patients with dementia tend to be older adults, they should be assured that it is payback time. All their lives, they gave to others—their children, their friends, their society. Now it is their turn to receive. The moral imperative is to provide compassion and care for people with dementia.

With the advance of dementia, its distressing symptoms become more frequent. Pain and agitation become more common as death comes nearer, but generally speaking, these are treatable symptoms. Studies have shown that cognitive behavioural therapy, palliative care and hospice care could greatly improve the care of patients with advanced dementia. Patients with dementia who receive hospice care have fewer hospitalizations and milder psychiatric symptoms as compared with those who did not receive hospice care. Furthermore, families of patients with dementia who receive hospice care report greater satisfaction with care. When individuals are aware of the complexities of dementia and factor in the contradiction at the end of life whereby, with severe dementia, they will not be able to remember their previous wish and may well be pursuing other interests, yet are making a conscious decision that this is the time when their own lives should be terminated, that decision is bound to be fraught with doubts.

At the onset of the illness, death is premature. In the later stages, it is questionable because the patients show that some aspects of life are still meaningful to them. In the last stage, the patients are no longer autonomous to make such momentous decisions, and the physicians cannot be sure what the patients then want.

The dementia paradox cannot be solved with euthanasia. It needs to be addressed by more care, compassion and good doctoring. The medical team has a crucial part to play in promoting quality of care, from diagnosis until the last stages of dementia, to assess changes in cognitive functioning, memory, depression, fears, communication difficulties and behaviour alongside identification and treatment of symptoms. Early requests to die are often the result of desperation that the medical staff and the patient's beloved people can forestall by providing them outstanding support, care and sharing that will assure the patients that they are and will remain members of the human community. What we should do—

[The Joint Chair, Liberal, Marc Garneau]

Doctor, I'll ask you to wrap up now.

[Dr. Raphael Cohen-Almagor]

Yes.

What we should do is humanize care for the living.

The liberal state has an obligation to protect all people, especially the vulnerable. To resolve the conflict between past competent and current incompetent interests, it is suggested that instead of simply enforcing all prior directives, doctors, families, and other people involved in the care of incompetent patients should be able to examine whether the patient's interest would be best served by actions contrary to advanced directives. What is required is a careful study, accumulation of knowledge and data, addressing concerns, learning from mistakes and attempting to correct them before rushing in a frenzied fashion to introduce more liberal ways to euthanize patients. Haste makes waste.

Thank you very much.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Doctor.

I now give the floor to Pierre Deschamps for five minutes.

[Pierre Deschamps, Lawyer and Ethicist, As an Individual]

Good evening, everyone.

Thank you for inviting me to testify.

This evening I will be discussing advance requests for medical assistance in dying.

Advance requests for medical assistance in dying make it possible for capable persons to consent in advance to the provision of medical assistance in dying where they are in a state of life or health incompatible with their values, such as a state of advanced dementia preventing them from recognizing family members or from performing their activities of everyday life. Such requests are now made as part of a relaxing of the rules governing access to medical assistance in dying, as may be seen in the way Canadian legislation has evolved on the matter.

I would like to draw your attention to a few historical facts.

Bill C‑14 made it possible for persons to agree to have a physician or nurse practitioner inflict death on them with their consent, provided they gave their consent at the time the medical assistance in dying was administered. This constituted an exception to, or a derogation from, the rule stated in section 14 of the Criminal Code that prohibits a third party from inflicting death on a person even where that person has given consent. This development was accompanied by the legislator's introduction of safeguards that restricted or limited the circumstances in which medical assistance in dying may be provided based on the eligibility criteria developed at that time.

Bill C‑7 added an exception to that rule by permitting persons to receive medical assistance in dying even if, at the time it is administered, those persons are unable to consent to it, provided they have signed a prior written agreement with a physician waiving the requirement to consent to medical assistance in dying at the time it is provided. Here again, the legislator established safeguards to protect the person who is to receive medical assistance in dying.

It is now being proposed that persons who do not yet have a grievous and irremediable medical condition, but who anticipate having such a condition, should, if in a given situation such as a state of advanced dementia preventing them from recognizing family members or performing their activities of everyday life, be allowed to receive medical assistance in dying in circumstances in which — and I want to emphasize this — they, although conscious, are unable to consent to the provision of medical assistance in dying.

By legislating on this matter, Canada would be joining a very small number of countries that have accepted that a person may receive medical assistance in dying by means of an advance request. I am referring to the Netherlands and Belgium, which have very different statutes on this issue.

In the Netherlands, advance requests for medical assistance in dying are authorized, but, between 2017 and 2019, there were only two or three cases per year of persons suffering from advanced dementia who received euthanasia in accordance with their advance medical directives.

In Belgium, an advance euthanasia directive takes effect only if a person is irreversibly unconscious at the time of euthanasia. In other words, that person must be in an irreversible coma. From 2016 to 2020, between 22 and 33 persons per year received euthanasia in accordance with their advance medical directives.

Unlike Belgium, Canada is currently considering the possibility of providing medical assistance in dying to a person who has made an advance request, not where that individual is in an irreversible coma, which presupposes a total loss of consciousness, but where a person with a grievous and irremediable medical condition such as advanced dementia is still conscious, even if only minimally so, but incapable of giving free and informed consent to the provision of medical assistance in dying.

In such circumstances, Parliament would be asked to validate or sanction under criminal law the possibility for a person who makes an advance request for medical assistance in dying to receive such assistance if the conditions that individual has established as activation triggers of his declaration are met.

While the drafting of an advance request for medical assistance in dying entails its own difficulties, particularly with regard to the identification of factors that may determine when it should take effect, activation of the declaration presents challenges in many areas: the medical condition required for consideration to be given to providing such assistance; the provision of medical assistance in dying to an incapable or more or less unconscious person; the severity of the person's cognitive losses; the family members who would be called upon to commence the assessment process leading to the provision of medical assistance in dying; and the medical and other assessments required to determine whether the person has reached a point where his or her previously expressed wishes must be considered.

Here the challenge for legislators is to design robust safeguards that will protect persons who have made advance requests for medical assistance in dying — such requests are generally made many years before the condition that may potentially give rise to their activation appears — from abuses such as medical assistance in dying that is provided too early or in haste under pressure from family members or medical staff who sympathize with the state of mental deterioration of the person, who will thus be put in a highly vulnerable position.

In addition to Parliament's intervention in criminal law, there can be no doubt that provincial statutes, as in Quebec's case, will be required to determine the circumstances in which an advance request for medical assistance in dying may be activated when a person is considered incapable of giving consent yet is still conscious, even if minimally so.

[The Joint Chair, Liberal, Marc Garneau]

Mr. Deschamps, I'll ask you to conclude your presentation, please.

[Pierre Deschamps]

Federal and provincial statutes should ideally be harmonized, if that were to prove necessary.

In conclusion, developments in Canadian legislation on medical assistance in dying are consistent with the perspective of long-term recognition of the fundamental right of every human being to choose when and how to die with the assistance of a third party, that is, a physician or other health professional.

Although that right is not formally acknowledged or entrenched in the Canadian Charter of Rights and Freedoms, it is hinted at in connection with a number of rights and freedoms.

For the time being, the exercise of that right is tempered by various safeguards that constitute so many limitations on the full exercise of that right. This includes the requirement that a person have a grievous and irremediable medical condition, be in constant, intolerable and incurable suffering, exhibit advanced and irreversible decline in capacities, be of adult age and have the capacity to give or waive consent.

Thank you for listening.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Mr. Deschamps.

We'll now go to Senator Jim Cowan and/or Ms. Long. I don't know if you're going to share the speaking, but you have five minutes between the two of you.

Please go ahead.

[Helen Long, Chief Executive Officer, Dying with Dignity Canada]

Thank you. We will be sharing our time.

Dying With Dignity Canada, or DWDC, is a national human rights charity, which has been committed for the past 42 years to protecting end-of-life rights and helping Canadians avoid unwanted suffering. For Canadians, this is not an academic debate. It is about compassion, avoiding suffering and fundamental rights.

Every day we hear from individuals and families as they navigate end-of-life choice, including but not limited to medical assistance in dying, or MAID. In developing our position, we sought out the insights and lived experience of health care practitioners, individuals with physical disabilities and mental disorders, first-person advocates and other volunteers within the MAID community.

We believe that everyone should have both the right to live and the right to choose their end of life. We encourage the government to continue to invest in increasing access to palliative care and in providing additional supports for people living with disabilities and mental disorders. At the same time, we strongly support the statement made by Dr. Stefanie Green last week that MAID and community resources for mental health, palliative care and disability supports be developed and supported in parallel.

By far, the most frequently asked questions we receive are those related to advance requests for MAID. An advance request involves a competent person making a written request that could be honoured later, after they lose the capacity to make medical decisions for themselves. It would allow an individual to describe in writing a future state in which they would like to access MAID.

We know, through multiple Ipsos polls, that Canadians support advance requests. Those results have been consistent over time and in line with those from the government consultation in the spring of 2020. Ipsos polling in April of 2022 indicated that 85% of Canadians support an advance request for those diagnosed with a grievous and irremediable condition and 77% of Canadians support an advance request without a diagnosis.

Canadians tell us that they are concerned about their capacity to provide informed consent to MAID due to a family history of neurocognitive conditions, such as dementia or Parkinson’s, or that an accident or other medical problem could result in diminished mental capacity. Advance requests for MAID would allow those who so choose to avoid a life of grievous and irremediable pain and suffering if loss of capacity occurs.

DWDC believes that advance requests should be allowed with or without a diagnosis of a serious and incurable illness. Canadians already have the right to provide advance direction regarding treatment options through personal care directives. The same right for an advance request for MAID would allow those who anticipate a loss of capacity to ensure that the guiding principles of their lives are respected when they can no longer speak for themselves.

Senator Cowan will complete our statement.

[James S. Cowan, Member of the Board of Directors and Former Senator, Dying with Dignity Canada]

Thank you, Helen.

Our MAID laws have been driven and inspired by Canadians whose desire for dignity, autonomy and self-determination have led them to fight for the right to make decisions that align with their own personal values. These are people like Sue Rodriguez, Kay Carter, Gloria Taylor, Audrey Parker, Jean Truchon and Nicole Gladu. Today, we hear from people like Pamela Cross, Katherine Hammond and the Eusanio sisters, whose experience with capacity-eroding conditions motivate them to speak up and support changes to the law.

DWDC recommends that the assessment of eligibility for MAID, including the requirement of intolerable suffering as described in the advance request, be completed by health care practitioners when made aware of an advance request prepared previously by an individual who has since lost capacity. The advance request should be documented in a manner that is consistent with the current process and include a personal statement that outlines the values and interests that are central to the person’s life and the core of their identity. That statement must be considered by the practitioners when making their assessment.

Time does not allow us to go through the details of the careful safeguards we have outlined in our brief, which will be filed with the committee, but we invite you to review them in detail and we would happy to expand on them and answer any questions.

Some clinicians have pointed out that individuals who have lost capacity and reach the point of what their advance request describes as suffering that is intolerable to them may not appear to be suffering at that time. However, the purpose of the advance request for MAID is to respect the previously expressed wishes of the person when they were competent. The safeguards and decision-making process ensure that the individual meets the criteria for assisted dying, and MAID would not proceed if the individual exhibits conscious indication of resistance or refusal.

There is no evidence that access to MAID in Canada or in any other jurisdiction has had a negative impact on societal values pertaining to individuals with capacity loss. Rather, it has brought more attention to end-of-life care in general, including palliative care, and to the need to ensure that all citizens can live and die well.

Thanks for your time today. We would be happy to answer any questions.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Cowan and Ms. Long.

That concludes our opening statements. We'll now go to a round of questions, and I will hand this over to my co-chair, Senator Martin.

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

Thank you, Mr. Garneau, and thank you to all of our witnesses.

For our first round, we will begin with Mr. Cooper for five minutes.

I will give a 30-second warning, although I know that in the room you can see the time clock as a double-check.

Mr. Cooper, the floor is yours.

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

Thank you, Madam Co-Chair. I'm going to direct my questions to Professor Cohen-Almagor.

Professor, can you speak to the difference between an advance directive in the context of MAID versus an advance directive in terms of withholding life-saving treatment? If you can have the latter, why would you not provide for the former?

[The Joint Chair, Hon. Yonah Martin]

Is that for Dr. Cohen-Almagor?

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

It is.

[Dr. Raphael Cohen-Almagor]

I want to say something general about advance directives for competent patients and for incompetent patients. I studied this in nine countries, including Canada, although I was last in Canada in the early 2000s, so I haven't been here in the past 10 years or so.

In my studies, you can see time and time again that doctors who deal with dementia patients tell you time and time again that it might be the case that when a person in a certain situation comes to their end of life, knowing that they're going to end up not recognizing their own life, their relatives and so on, they change their mind. They find it meaningful and esoteric. They've now found meaning in something that would have been utterly meaningless to them, say, a few years ago.

I think you have to differentiate between conditions. If it's physical deterioration—a physical condition in which the mental capacity remains—I totally agree with James Cowan and Helen Long in all they said. When it comes to dementia and issues of the brain, I cannot agree, because people change and people change their minds.

Look at marriage. Many people, when they get married, think that marriage is for life, yet we see that 50% of the population get divorced. They change their minds. If you ask a young person whether he or she can perceive life in a wheelchair, the common answer is, “I'd rather die.” God forbid they enter into that state after a car accident, but when they find themselves in a wheelchair, they don't want to die. The majority of them want to continue living. I've seen patients in horrendous conditions, but when you ask them, “Would you like to die?”, they are silent.

We have to be very cautious when it comes to incompetent patients. To me, the issue of autonomy is something that we are all concerned about. I think all Canadians are concerned about autonomy. That's what motivates MAID: the autonomy of the patient. I don't think we can encompass that to incompetent patients. This is where we have to set the boundary, and the boundary should be very strong and very firm.

If you're going to pass these measures, we are going to open the gate to abuse, and Canada does not want that.

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

Thank you for that.

Can you speak to your work in other countries and some of the issues that you saw surrounding advance directives that you believe are a cause for concern?

[Dr. Raphael Cohen-Almagor]

I've spent a lot of time in Belgium and in the Netherlands. In the Netherlands, I saw advance directives of, let's say, something like “I would like to die if I don't recognize my children anymore.” This is a statement made by a competent patient with a sane mind and so on, but God forbid it comes to the later stages. Of course, it doesn't hold any water—

[The Joint Chair, Hon. Yonah Martin]

You have 30 seconds.

[Dr. Raphael Cohen-Almagor]

—and, of course, nobody is going to take this seriously.

I went to a nursing home in Amsterdam and spoke with Dr. Bert Keizer, who wrote a very famous book, Dancing With Mr. D. Bert supports euthanasia for patients, but he finds it very difficult to support it for patients with dementia because he understands what it means. People change their minds, and you can't kill someone who sees that there's something meaningful, like watching television—

[The Joint Chair, Hon. Yonah Martin]

Thank you very much.

Next we have Dr. Fry for five minutes.

[Hedy Fry, Liberal, Vancouver Centre, BC]

Thank you very much.

This is a very interesting, and a very charged set of circumstances. As far as I am concerned, having been a practising physician for 22 years, the idea of an advance directive is that the patient, as you said, should have informed consent, and then the patient should make a decision. If patients are ever going to come to a time when they are not compos mentis, they decide on the conditions that they wish to happen if and when they get there. That's what an advance directive is about.

The Supreme Court was very clear about section 7 of the charter, and then I wonder, because I hear you and Monsieur Deschamps. Does Monsieur Deschamps agree with the Supreme Court decision in Carter under section 7? Do you, sir, believe that a physician should second-guess a patient?

Patients are concerned that there will come a time when other people will do things to them. They are abused. Do you not agree that this abuse can work both ways? It can occur when a patient is not compos mentis and a family would like to get rid of the patient. If the patient in an advance directive says, “I don't care what happens to me; I would like to continue living”, families could in fact make a decision with a physician that that's not so.

Similarly, families could make a decision with a patient who said, “There comes a time when I will not be able to mentally make a decision, and I want to be able to die with a certain amount of dignity, and here are my conditions, being fully informed.”

I don't understand. This is about the patients, as far as I'm concerned. This is about the best interests of the patients, the autonomy and the self-determination of patients who make that advance directive, because they're very concerned that other people will change it when they become incompetent. I'm now hearing people saying that it's okay for physicians who don't know what it's like to have Alzheimer's, who have never had it themselves, who don't know what it's like to live in that patient's body with that patient's autonomy. They are making decisions for them, and I call that physicians playing God.

The Supreme Court was very clear on section 7 of the charter. I am hearing people telling me that the Supreme Court didn't know what it was talking about, that the doctors know better than patients what a patient requires, especially if they disagree with the patient's advance directive. I don't understand advance directives to be about that at all.

I'd like to hear from Monsieur Deschamps and Mr. Cohen about this. Why is it that other people believe that they have the ability to make the decision for a patient who has obviously made that decision in advance, because they were scared of being non compos mentis?

[The Joint Chair, Hon. Yonah Martin]

Go ahead, Mr. Deschamps.

[Pierre Deschamps]

Thank you, Madam Chair.

To respond to Dr. Fry, I'll repeat what I said in my remarks that Canadian laws at both federal and provincial levels are evolving toward a recognition and acceptance of advance requests for medical assistance in dying. The problem or challenge Parliament faces is to ensure that people who request assistance in dying get it at the right time, when they are in a vulnerable position. We'll definitely get there, but Parliament has to put appropriate safeguards in place to enable people to exercise that right.

What the Supreme Court said in the Carter judgment is that Canadian citizens must be treated equally but that the idea is not to deny a right to people who are vulnerable to a degree but rather for Parliament to put appropriate safeguards in place. It was—