Is it agreeable to everyone to adjourn the discussion until next Monday?
Some hon. members: Agreed.
The Joint Chair (Hon. Yonah Martin): Thank you.
With that, I would like once again to welcome the members of the committee, the witnesses and members of the public who are following this meeting of the Special Joint Committee on Medical Assistance in Dying.
I am Senator Yonah Martin, and I am the Senate's joint chair of this committee.
I'm joined by the Honourable Marc Garneau, the House of Commons' joint chair.
Today we continue our planned review of the provisions of the Criminal Code relating to medical assistance in dying and their application.
The Board of Internal Economy requires that committees adhere to the health protocols, which are in effect until June 23, 2022. As joint chairs, we will enforce these measures, and we thank everyone for their co-operation.
I'd like to remind members and witnesses to keep their microphones muted unless recognized by name by the joint chair.
As a reminder, all comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly.
Interpretation in this video conference will work as it does in an in-person committee meeting. You have the choice, at the bottom of your screen, of either “floor”, “English” or “French”.
With that, I'd like to welcome all of our witnesses.
For the first panel, we have, as individuals, Louise Bernier, professor, faculty of law, Université de Sherbrooke, and Trudo Lemmens, professor, Scholl chair, health law and policy, faculty of law, University of Toronto.
We also have Ms. Danielle Chalifoux, lawyer and chair of the Institut de planification des soins du Québec.
Each of our witnesses will have five minutes, starting with Ms. Bernier.
Good evening. I am delighted to be with you today as part of your study on advance requests for medical assistance in dying, although I am personally more concerned with requests that are made following a diagnosis of neurocognitive disorder.
Today I will be providing you with some food for thought in three main areas: first, support in making advance decisions; second, implementing MAiD; and, third, the long-term effects of this societal decision more generally.
I will begin with support in making advance decisions.
In my research work, I have realized how important it is not to be sparing with this type of support. Since advance consent is always imperfect, we really must reflect on how we plan to support patients in their process of consenting to end-of-life care, or final care. If we go ahead and allow advance requests for medical assistance in dying, it will be very important that patients be supported by health professionals. We must develop mechanisms to ensure that their choice is not made without medical expertise, given the complex nature of these conditions and the various possible stages and scenarios.
In Quebec, we have a system of advance medical directives on which I have done a considerable amount of work in recent years. To respect individual autonomy and create a tool that's flexible and easy to use, we have come up with a very simple solution: a form with boxes to tick. We even assumed that patients had gathered information before signing it. If we decide to allow advance requests for medical assistance in dying, we will definitely have to do things differently. There has been very little uptake of our advance medical directives system, and that may be one of the reasons why.
What I'm imagining is a flexible tool that would help people establish priorities and provide a reference point when they become incapable. They should also be able to ask questions, to be supported and to plan, together with other professionals, how all that will fit in with follow‑up care. People must not be left to their own devices. There is broad acceptance in Canada and Quebec of the idea of being able to make such an advance decision on one's own, but, from what I have observed from my reading and work, we also have a duty of support.
There is also the idea of letting people change their minds. I will even go so far as to say that consent should be an ongoing process, by which I mean that people must reaffirm their informed consent to this care as their condition evolves, relying on the experiential knowledge they have acquired.
The second part of my presentation concerns the importance of reflecting on the implementation of this choice, which is often described as an individual choice rooted in individual autonomy and self-determination. I obviously don't question this, but we also cannot disregard the fact that this choice, once the person has become incapable, will be implemented by third parties, mainly health professionals, who are also governed by professional, ethical and legal obligations.
You are obviously aware of the assessment that these professionals are required to conduct under the act. Currently, for example, there is the criterion of suffering, which always resurfaces. For access to care to be granted, it must be established that the person is experiencing persistent and intolerable suffering. How is that suffering assessed? I don't have the answer. Will we allow individuals to determine in advance what suffering is for them? Will we request a contemporaneous assessment of that suffering? What will we do if there are no factors indicating whether the incapable person is suffering or not?
What I'm getting at is that we must provide the caregivers and health professionals who execute the decision with markers and tools. We want to prevent them from being troubled by existential questions and wondering whether they have correctly interpreted the situation. We also want to prevent them from suffering in the process.
There will also be repercussions for family members, who, whether we like it or not, will also play a central role in these decisions. They won't be making the decisions, but they will be involved. What role will be assign them? Do we want to give them a role that's more…
I thank the committee for the invitation.
I was, as professor of law and bioethics, a member of the Council of Canadian Academies' expert panel on advance requests for MAID. I have studied MAID and euthanasia law and practice, particularly also in the Belgian and Dutch regimes.
As others, I come to this with previous experience. I think of my late mother, who lived in Belgium, where euthanasia based on an advance request is only possible when a person is no longer conscious. Belgium has relatively good elder care, and my mother had some reassurances that she would be treated with the care our elders with dementia deserve and their inherent dignity requires. I think of my Montreal father-in-law, who had a supportive spouse and the means to receive good quality home care.
Many Canadians, however, face he prospect of being warehoused in substandard long-term care homes. We already see how lack of resources and quality care lead persons who are not dying to request MAID. It is in this context that AR for MAID is put forward as a solution to what is referred to as a loss of dignity—yet, we know that quality care is possible and can preserve dignity.
If some recent recommendations are followed, health care providers would need to introduce MAID when informing a patient of a devastating diagnosis of, say, early Alzheimer's. This ignores, in my view, the dynamics of doctor-patient relations and the pressure that can result from professionals suggesting that medicalized death is a solution in a context where lack of social and good elder care support are already undermining consent.
ARs for MAID further raise insurmountable ethical and human rights concerns. We should reconsider them and, in my view, not expand them further. The concerns they raise are reflected in this: Belgium only allows MAID based on advance requests when persons are permanently unconscious, to avoid euthanizing people who still enjoy life and may resist. The Netherlands originally had difficulty with MAID based on advance requests, since they considered it impossible to defend it on the basis that persons “suffer unbearably” if they could no longer confirm this. It now has permitted it for persons, even when they appear to resist.
Neither regime involves explicit, contemporary consent, arguably constitutionally required if we take the Supreme Court's emphasis on “clear consent” in Carter v. Canada seriously. Allowing AR for MAID reflects the idea that prior wishes of patients who cannot fully appreciate what future illness will bring have priority over current interests; that this can be done by procedures that give third persons clarity about levels of suffering and patients' real wishes; and that there are no serious implications for family members, health care providers, other disabled persons and society at large. AR for MAID is, in this view, a question of management.
The Council of Canadian Academies' expert report shows that there is no evidence that procedural solutions can easily address the legal and ethical concerns. Even its discussion of communication tools to reduce uncertainty shows that these solutions are theoretical and speculative.
The International Convention on the Rights of Persons with Disabilities explicitly recognizes in its article 12 the inherent legal capacity of persons with cognitive disabilities. This implies a duty to enable expressions of current interest.
Evidence from the Netherlands, the only jurisdiction that allows euthanasia of persons with advanced dementia who are still conscious, shows what this means. It inevitably involves third party consent and evaluation of the person's suffering. It usually involves surreptitious medicating of patients to suppress resistance and then actively ending life. Contrary to withholding treatment in other health care contexts, it involves an active invasion of a person's bodily integrity. Surreptitious medicating and suppressing resistance violate ethical norms and run counter to the duty to enable an expression of current interests of cognitively disabled persons, which the international convention requires. It moves us into involuntary ending of life. It expresses in law also the view that life with cognitive disability involves loss of dignity.
I urge the committee to read a recent article by Belgian and Dutch experts, who argue that Belgium should avoid the Dutch approach. Belgium legalized euthanasia in 2002. Twenty years later, and informed by the practice in the neighbouring country, it still hasn't expanded its AR regime for MAID. Our current AR regime for MAID already goes beyond Belgian law, while our social and health care support is below the OECD average.
We should listen to experts who tell us, based on the Dutch experience they've studied—and these are not people who are against legalized MAID—that ARs for MAID create insurmountable ethical and legal concerns—
Senators and members, thank you for inviting me.
I have been a member of the Barreau du Québec since 1985 and, since 2010, chair of the Institut de planification des soins du Québec, which is particularly interested in the seniors' rights and medical assistance in dying.
I have published many articles on those topics and have sat on numerous expert panels and government and parliamentary commissions.
I have also conducted studies on nursing care and practice, mainly in CHSLDs and palliative care homes, which has helped me understand the issues in a more practical way.
Given the time allotted me, my comments will focus solely on potential statutory amendments respecting advance requests for medical assistance in dying.
First of all, I would emphasize that rescinding the reasonably foreseeable natural death criterion has resulted in a considerable increase in the number of persons able to access medical assistance in dying. For those with cognitive disorders, for example, it is now sufficient for their grievous and irremediable health condition to be accompanied by an advanced state of irreversible decline in capacity and suffering that they obviously consider intolerable, provided they are still sufficiently capable.
I would note that the Canadian Association of MAiD Assessors and Providers, which really is the authority in this field in Canada, considers that the imminent loss of capacity associated with neurocognitive disorders must be considered as an advanced state of irreversible decline in capacity. When the loss of capacity is anticipated in the near future, these persons may then request and receive medical assistance in dying contemporaneously.
In addition to this option, it would also be possible to make an advance request for medical assistance in dying. These individuals would thus have two options.
Now I would like to draw your attention to the fact that some people recommend granting medical assistance in dying solely to persons who, before making a request, have received a diagnosis of neurocognitive degenerative disorder.
If Parliament adopted such a restriction, that would mean that victims of sudden and unforeseeable impairment that may result in a loss of capacity, such as stroke and severe cranial trauma, would be excluded as they clearly would not previously have obtained a diagnosis. The Institut de planification des soins du Québec believes that the adoption of such a restriction would be neither legitimate nor lawful.
This restriction would be illegitimate because it would run counter to the opinion of a very large majority of citizens. In the public consultation that the Quebec government recently conducted in the course of its work, 91.8% of respondents were in favour of advance requests for medical assistance in dying in the event of sudden and unforeseeable incidents resulting in a loss of capacity.
This restriction would also be unlawful in our view because it would contravene section 1 of the Canadian Charter of Rights and Freedoms and at least two of the tests established in the Oakes judgment. It would contravene Parliament's obligation to impair rights as little as possible because appropriate and far less draconian safeguards could be adopted. It would also contravene the proportionality test as the benefits would be more operational, but the deleterious effects would amount to a negation of recognized rights, both the right to self-determination of persons and the right to medical assistance in dying.
In conclusion, if Parliament adopted such a restriction preventing medical assistance in dying from being granted to persons who have obtained a prior diagnosis, all victims of a sudden and unforeseen impairment would be deprived of their rights. Thus, the first class of persons that we discussed earlier would have two options, to make a contemporaneous or an advance request for medical assistance in dying, whereas persons unable to make an advance request before obtaining a diagnosis would have none.
Thank you very much. I'm grateful for that. This will allow me to explain my final point and round out my remarks.
If we, as a society, choose to expand access to medical assistance in dying, we must not downplay the impact that could have on the more social aspect of the autonomy that's exercised.
We must consider the effect that an expansion of access to medical assistance in dying would have on social perceptions of illness. No one who receives a diagnosis of neurocognitive degenerative disease should feel that he or she is expected to request medical assistance in dying now that it's being offered. We must also continue to invest in providing parallel care, as Mr. Lemmens said, to ensure that those who make a different choice continue to receive care, that there is no interruption of care and that there is no therapeutic abandonment.
That's the point I wanted to make. I'm very pleased to have had the opportunity to do so because it was really important for me to discuss the societal aspect of this issue. It should not become the ideal option, and we must not abandon people who don't make that choice.
Thank you very much, Ms. Bernier.
Good evening, Ms. Chalifoux. Thank you for being with us this evening.
You say it shouldn't be necessary to get a diagnosis beforehand. You laid out your arguments on that point.
However, I'm interested in what's happened in Quebec, and unless I'm mistaken, Ms. Chalifoux, Quebec hasn't gone that far. We're waiting for the party in power to table the bill once the committee has done its work. At any event, we aren't going as far as you and other individuals suggest. We're saying yes to advance requests in cases of neurodegenerative conditions, but if, and only if, a diagnosis has been established.
Ms. Chalifoux and Ms. Bernier, in Quebec, we have what are called advance medical directives. They aren't yet widely known, and they very often apply to specific situations. For example, one can consider the desired level of care when a relative enters a CHSLD, which is a long-term care facility. Advance medical directives cover discontinuation of treatment, refusal of treatment, level of care, reanimation and so on, and that's not well known.
Shouldn't we develop an entirely separate process for advance requests for medical assistance in dying, as some witnesses have proposed? That would apply to neurodegenerative disease cases, where the stages of development are predictable and there's an established process and an entire team following the patient right up to the medical-assistance-in-dying stage.
Shouldn't the cases you refer to, strokes, aneurysms and so on, be covered by advance medical directives?
Conceptually speaking, wouldn't it be better to distinguish between the two mechanisms so we can move forward cautiously, as circumstances dictate?
Thank you for that question, which is very interesting.
I have a lot to tell you, but I'll try to summarize my comments.
I've extensively studied the advance medical directives regime, and, as you know, very few people have had access to it. We're talking about slightly more than 100,000 persons in Quebec, so it isn't an extensively used regime.
I don't share x Ms. Chalifoux' view. I think advance medical directives do cover strokes. We should separate that and stick to diagnoses of neurocognitive disorders.
As for support, that's a very interesting question, but I don't think we can do without a discussion beforehand. There's an implementation problem. A read flag is raised because of what was said, but there was no discussion.
According to some recent studies conducted in 2022, the discussion is far more important for patients than the form. Consequently, it's important to discuss various scenarios with them and to ascertain their values. I think it's important to state in advance that the process won't be limited to the form and that the basis of the decision will be explained.
It's also important that the family be present.
I really view this support as being divided into two parts.
Thank you very much, Mr. Co-Chair.
It's quite obvious, when you look at the status of health care in Canada, that many groups simply do not have access to equitable care. There are very real concerns for many communities out there about the conversations we're having around this table and the direction that this law could potentially be taking.
Professor Bernier, I'll start with you.
On the subject of informed consent in relation to the concept of advanced requests, we noticed that a lot of people have a fear of being a burden on their families. Given the state of long-term care in Canada, they also have a fear of losing their agency. They look at people who may live with disabilities. They fear being put into that kind of life.
In this conversation, we're dealing with very weighty subject matter. I mean, how on earth are we going to address this committee's mandate, if we're not...? It seems like we're putting the cart before the horse if we're not dealing with those larger societal issues, these bigger and broader topics of equitable care being unavailable to so many under-represented groups.
If we're not dealing with that, how are we proceeding on this? Do you have any thoughts on that?
I would first of all say that the procedural tools you find in the Council of Canadian Academies' report focus on issues of communication, even at the level of guaranteeing that persons are respected in their future choices when they are no longer the same person or have the same interests.
As Professor Bernier has shown—and also the work with her colleague Professor Régis, at the Université de Montréal—in the context of advance requests, we know already it is very hard to predict in advance what we will think, what will happen and what kind of interests we will have. That's one issue that is already not guaranteed by the procedural tools.
The procedural tools certainly do not address broader societal concerns, such as the fact that we're crossing the line into allowing third parties to decide whether a person is now suffering intolerably and whether the person's life can be ended. We're crossing a line, which impacts also on our perception of cognitive disabilities more generally. If we do it for people who, before becoming cognitively disabled, say that they will want to die because they will lose dignity, what do we say to people who currently have cognitive disability and have not made that choice?
We're crossing a line into a practice that undermines a fundamental commitment to allowing persons with cognitive disability to be treated with respect and dignity and to be involved in the decision-making. The international Convention on the Rights of Persons with Disabilities emphasizes that. It's not the case that when someone has cognitive decline, you can say, “Oh, in the past you made this decision and now we will ignore your current identity and interests and give you surreptitious medication against your explicit consent and then end your life.” These issues cannot be solved by procedural means.
It all really depends on the progression of the disease. Ms. Vien asked why I felt ill at ease, and that's why. What's involved is determining the appropriate moment ahead of time, without altogether understanding the course of the disease. There are various possible scenarios, and suffering is one of the factors on which I have trouble taking a position
When a person assesses suffering ahead of time, it's the person in the present who is making a decision about the person of the future. There is abundant scholarly literature on that subject. Has the person undergone a change in identity or not?
When someone does not appear to be suffering, it's difficult to determine the right moment to provide medical assistance in dying legally, while complying with our moral, professional, and ethical obligations as caregivers. The assessment of suffering is therefore something that requires in‑depth consideration.
I would like to make a comment, if I could, Chairs, that over the last few sessions we have heard witnesses so many times using pejorative words and making claims about surreptitious medicating and other things. I think we need to make sure in advance that our witnesses are reminded that their statements should be supported with evidence and documentation if they are going to be meaningful for us here, and they should be qualified to comment on this, because it is our mandate to look at advance requests.
My question is for Danielle Chalifoux.
We talk a lot about safeguards for health care professionals. I think you mentioned that again this evening. I guess my concern is about the safeguards and assurances for the individuals who, being of sound mind, ask, through an advance request, to have MAID when certain conditions are met or when they have reached a certain level of decline.
How can we actually assure them of those safeguards without something like an advance request being expected and recognize that there simply isn't any other way?
I'd like to thank the witnesses for their insightful testimony.
Ms. Chalifoux, you said that advance requests should not be restricted to cases of neurocognitive disease because that would exclude all other types of medical problems, such as strokes.
For the former, the assumption is that a person received a diagnosis and is still capable of making a decision, but this decision cannot be reviewed afterwards because the person's capacity to give informed consent will have disappeared. For the latter, a person who has had a stroke or who is suffering from another disease may have made a decision 10 years or even 20 years earlier, and it would be possible to develop a mechanism that would review the circumstances every five years, for example.
What you're really suggesting is introducing different regimes depending on the type of advanced directives.
Is that correct?
Well, the two aspects of the question are not altogether different, because the underlying philosophy for respecting the right to self-determination continues to apply in both. The laws of genetics tell us, for example, that people whose parents have had a stroke also risk having one, and that they are probably worried about it. They say to themselves that they would like to be able to guarantee their right to medical assistance in dying through advanced medical directives.
I believe Mr. Arseneault suggested earlier that there could be an update process to review advance requests every five years, for people to confirm or cancel their decision, if they wish. It's true that this would not exactly be contemporary to the request, if I can use that wording, and it would be up to people to take responsibility for confirming or cancelling their decision. It would amount to a guarantee, or a safeguard, that could facilitate matters.
I'd simply like to mention that in nursing homes and palliative care units I often saw people who had had a stroke and were incapacitated, suffering, and asking to die every day.
I don't see how we could make a distinction between people who have received a diagnosis of a disease about which they can do absolutely nothing, and people who have had a stroke. A stroke happens suddenly, unexpectedly and unforeseeably. These people would be deprived of a right available to others.
Thank you for giving me the opportunity to respond, contrary to what Senator Wallin did. She basically questioned my integrity.
I have studied what's happening in the Netherlands, and the practice they described is actually the reason there are more physicians in the Netherlands who are now opposed to medical assistance in dying for persons with dementia than there were before. Contrary to what Maître Chalifoux says, the Netherlands actually did not have the practice of advance requests for MAID in the first years of its legalization. It took many years to start implementing it, and it has become, and remains, more problematic precisely because of the things I described.
Most physicians are now reluctant because of the uncertainty and what it involves. In other words, my message is that we're sending false hope to people that they will actually easily have an implementation of an advance request, because we do not know how the disease will evolve. Four out of 16 cases that the Council of Canadian Academies expert panel studied—so we're not talking about the broad practice that was implemented—involved patients with questionable capacity who received MAID. In those cases, the review committees, which do much more detailed work than we have currently done in Canada, judged that the due care criteria were not respected, so they had questions about the practice.
I'm simply stating the facts, and I find it problematic that a senator questions my integrity when I studied this honestly and with professionalism, and I have come here as an expert to convey what's happening in the Netherlands and what legal scholars and ethics scholars have again recently discussed. This is the dilemma that we face. We will have to surreptitiously medicate people. We will have to deprive them of their ability to express a current wish in order to facilitate the ending of life.
I'm actually very disturbed that a senator makes it difficult for witnesses to talk and to convey the knowledge that they have about practices in other jurisdictions. I find it very inappropriate. We are here in a parliamentary democracy. You invite experts to come and talk about what they know, and you treat them like this. I think it's inappropriate.
I apologize, Mr. Chair and Madam Chair, for saying this here, but I am very disturbed by this.
Yes, I will, Mr. Co-Chair.
For the benefit of our new witnesses, before speaking, please wait until you are recognized by name.
As a reminder, all comments should be addressed through the joint chairs.
When speaking, please speak slowly and clearly. An interpretation in this video conference will work like an in-person committee meeting. You have the choice at the bottom of your screen of “floor”, “English” or “French”. When you are not speaking, please keep your microphone on mute.
With that, I'd like to welcome our witnesses for panel two.
We have, as an individual, Jocelyn Downie, university research professor, faculties of law and medicine, Dalhousie University; Dr. Catherine Ferrier, physician, division of geriatric medicine, McGill University Health Centre; and Dr. Susan MacDonald, associate professor of medicine and family medicine, Memorial University of Newfoundland.
Thank you all for joining us this evening.
We'll begin with opening remarks by Ms. Downie, followed by Dr. Ferrier and Dr. MacDonald.
Ms. Downie, you have five minutes. The floor is yours.
Thank you and good evening.
Thank you for the invitation to appear before you.
My name, as you've heard, is Jocelyn Downie, and I'm a university research professor in the faculties of law and medicine at Dalhousie University.
I have provided written submissions, including relevant references, to the clerk, and in my five minutes I will introduce some key points for your consideration.
I believe that there are three main questions before you on the issue of advance requests for MAID: one, whether to allow them, and if so, two, when to allow them, and three, how to implement them.
First I'll have a word about terminology: Throughout my remarks, I will use the phrase “advance requests” instead of “advance directives”. This is critical to avoid confusion between the relatively new federal regime for MAID, governed by the Criminal Code, and the already well-established provincial/territorial regimes for other health care.
With that, I'll go on to the questions at hand.
Let's start with whether to allow advance requests for MAID. I encourage you to recommend that Parliament do so, for a host of reasons.
First, all of the many expert committees and panels that have studied the issue and had a mandate to make recommendations have recommended this.
Second, public opinion strongly and consistently supports it.
Third, the courts and provinces and territories have said that individuals should, while capable, be able to make refusals of treatment, refusals that are binding after they lose decision-making capacity. What this means is that I can have an advance directive that says when I reach stage 7 of Alzheimer's or have lost capacity due to Huntington's disease, I refuse all food and liquids. The clinicians must respect my directive, so I will die of dehydration and starvation, or, if you change the law, I could have MAID. To deny MAID is both illogical and cruel.
Fourth, Parliament has already made the decision to allow some advance requests for MAID: “Final consent — waiver” and “Advance consent”, introduced through Bill , are two forms of advance request.
Fifth, some persons with dementia already have access to MAID. They are carefully tracked by a provider closely monitoring their diminishing capacity, state of decline in capability, and suffering. After they have met the eligibility criteria for MAID but before they have lost capacity, they can either access MAID through what is known as the “ten minutes to midnight” protocol or sign a final consent waiver, but they must have a provider willing and able to do this, and they may live for years in fear of not getting the timing quite right and not getting MAID.
Sixth, the concerns that you will hear during your process either aren't conceptually coherent, apply to that which we already allow, and/or can be addressed through procedural safeguards. I cannot, in the time allotted, do justice to the complexities of, for example, personal identity, critical interests, precedent autonomy and the paradox of disability, but I can commend to you the analysis in the 2019 report from the Quebec expert panel on the issue of incapacity and medical assistance in dying.
Finally, there has been enough time to consider this legislative reform, from the provincial/territorial expert advisory group in 2015 to the special joint committee of the House and Senate in 2016 to the 2019 Quebec expert panel and to the 2021 Quebec special commission. This has not been rushed—far from it.
Now, let's turn quickly to “when”.
I encourage you to recommend that advance requests should be permitted after diagnosis with a serious and incurable condition.
Finally, let's turn quickly to “how”.
I encourage you to reflect in your recommendations the philosophical justifications for advance requests for access and for protective measures, the values reflected in our existing laws and the realities of clinical practice.
To that end, I encourage you to recommend that the law first require that a valid advance request document spells out both what the person considers will be intolerable suffering as well as objectively assessable conditions for triggering the advance request.
Second, establish what to do if the now incompetent person appears to have changed their mind or does not appear to be suffering—specifically, follow what the person said should happen if they appear to have changed their mind or do not appear to be suffering—and require, as part of the informed consent process, the disclosure that this may happen.
Third, require that the request be renewed on a regular basis so long as the person remains competent.
With that, my time is up. I thank you for your attention and I welcome your comments and questions on anything that I have said or any other matters of interest to you.
Thank you very much, Madam Chair and Mr. Chair. I'm happy to be here.
I've been a physician in the division of geriatric medicine at the McGill University Health Centre since 1984. My practice is focused on patients with dementia. I'm an expert in decision-making capacity assessment. I see victims of elder abuse. I teach on these topics and testify frequently in court for my patients.
I have cared for and accompanied thousands of people with dementia and their families. My perspective is very different from those who view my patients from an academic or political point of view. I have learned how well people adapt to the changes in their lives wrought by cognitive decline. There are many challenges, not least of which are the ageism, ableism and neglect they face in the health care system.
Despite this, most people do well when measures are put into place to support them and their families. In 38 years, none of my patients or their relatives have ever requested MAID because of a dementia diagnosis.
I've noticed in this debate the assumption that advance written directives are a proven tool that enables autonomy and provides adequate free and informed consent to medical interventions. This is false. For consent to be valid, it must be voluntary. The patient must have the capacity to consent and must be informed. Consent is informed when the patient has received and understands the detailed information in the diagnosis, including any uncertainty, the proposed investigations or treatments, their chances of success, available alternatives and their risks, and the potential consequences of leaving the condition untreated.
Advance consent can never be fully informed.
The 2018 CCA expert panel on MAID by advance requests cited knowledge gaps and a lack of evidence regarding its safety. They reviewed the literature on advance care planning, or ACP, a field that was developed to improve medical decision-making towards the end of life. ACP is not limited to advance directives. In fact, its scope is becoming broader over time, as the limitations of such directives, also called living wills, become evident. Articles published by experts include “Why I don't have a living will”, in 1991; and “Enough: The Failure of the Living Will”, in 2004.
Definitions of ACP refer to a reflection and communication process to ensure goal-concordant care near the end of life for people lacking decisional capacity. Components include discussion of broad life and health care goals and naming a substitute decision-maker.
Of the research reviewed by the CCA panel, very little studied written directives alone. The report mentions no evidence that written directives effected any meaningful outcomes. In one Canadian study, the documented preferences did not match the expressed wishes of the patient 70% of the time.
A 2020 review of 69 studies found no effect of advance care planning on goal-concordant care or quality of life. These results make sense, given the evidence that people predict poorly their quality of life in hypothetical situations. This has been attributed to known cognitive biases, such as projection bias, projection of current preferences onto future situations; focalism, focusing on what gets worse, not what remains positive; and immune neglect, underestimating one's adaptive capacity.
We often see a change in preferences for care as a person adapts to advancing illness. This is true even in dementia, and it is is why we respect the current wishes of incapable patients as long as they are not harmful to the patient.
More and more end-of-life experts express serious doubts about the utility of written advance directives. Recent articles include “Advance Directive/Care Planning: Clear, Simple, and Wrong”, in 2020; “What's Wrong with Advance Care Planning?”, in 2021; and “Should we still believe in advance care planning?”, in 2022.
Morrison et al, the authors of one of those articles, state:
Treatment choices near the end of life are not simple, consistent, logical, linear or predictable but are complex, uncertain, emotionally laden, and fluid. Patients' preferences are rarely static and are influenced by age, physical and cognitive function, culture, family preferences, clinician advice, financial resources, and perceived caregiver burden.”
For these reasons, there's been a shift in practice from promoting written documents to a dynamic process of dialogue. This is the standard of care for end-of-life decision-making.
It is absurd and alarming that written directives, having failed for ordinary treatment decisions, are now being contemplated for MAID.
To cause the death of a person with dementia who is not asking for it on the basis of advance consent that is necessarily uninformed is contrary to autonomy and beneficence and has nothing in common with treatment withdrawal decisions. There is a broad consensus in ethics and medicine that to directly cause death is distinct from allowing death to occur through the natural progression of an illness.
Advance directives for MAID would lead to elder abuse through manipulation and forgery of directives. I've seen it with powers of attorney, where the consequences are not nearly as grave.
If MAID by advance request became legal and binding, Canada would be the only place in the world where a state agency is obliged by law to kill an innocent and defenceless person.
Good evening. Greetings from Newfoundland and Labrador.
I have practised palliative care for 30 years and have had the privilege of caring for thousands of patients and families. I provide secondary assessments for MAID and have had a close relative utilize MAID. My words today will reflect my personal thoughts on the subject rather than support any organization.
I feel that MAID is an end-of-life option that can be part of palliative care but is not exclusive to it. Many of us who practise palliative care are involved, to some degree, in the provision of MAID, whether it is to fully inform our patients of all their options, including MAID, to discuss this option in depth with our patients, to be the second assessor, or to be the primary provider. There will always be a divide among clinicians on this subject, but, regardless of a clinician's personal feelings, the patient has a right to know about this procedure, what the criteria are and how to obtain it.
From a practical point of view, here are my thoughts about MAID and advance directives.
My first concern is about palliative care. Not everyone has access to palliative care. Provincial and local issues dictate whether anyone with skills in this field of medicine is available. Virtual care has limitations and cannot fully compensate for this lack. Some patients could benefit from our services but are limited in access because their physician refuses to refer, because their local program has limitations regarding who can have services and for how long, or because there may not be anyone available to provide in-home care. There may be no paramedics trained to provide palliative care at home. In my jurisdiction, having this service very significantly reduces the number of admissions to institutions. Good symptom management and support at end of life, whether it be in the last years, months, days or hours, is a human right. We're failing the Canadian people when postal codes determine access.
My other concern is that MAID is not routinely offered as an option. Ideally, all choices for patients should be outlined early in order to give patients ample time to consider which options work for them and which do not. Not informing a patient that MAID is an option is unfair to the patient and doesn't follow the guidelines for informed consent. For example, would we consider that a patient newly diagnosed with cancer be offered surgery, radiation and symptom management only, if chemotherapy were also possible? Would we say to ourselves, “We don’t offer chemotherapy unless the patient specifically asks about it”? Of course not, yet this happens over and over with MAID, because there is a perspective among some clinicians that they cannot raise the topic and that to mention it encourages or solicits a patient. Patients require time to consider their options: “What's in keeping with my personal philosophy? What can I afford? What can I obtain? What do my culture, religion and personal values tell me is right?”
We know that some populations in this country have less access to MAID than others. We must continue to be mindful about this and work hard to ensure that all Canadians have the opportunity to avail themselves of all of the end-of-life choices that suit them. Patients should be able to obtain MAID wherever they live.
However, there are still institutions and organizations that deny MAID on their premises. My own relative couldn't go to her local hospice, because she wasn't allowed to have MAID there.
MAID providers should have adequate training and support. This should be standardized across the country. Many providers find they need adequate breaks or supports when involved in this type of care. We need to ensure there are enough clinicians who thoroughly understand what they're doing and how to do it. There has to continue to be clear oversight, data collection and frequent evaluation.
People should be able to determine whether they want MAID at a future date, should they become incapacitated. Many of my patients have told me over the years that the one thing they fear the most, beyond pain, shortness of breath or anything else, is the loss of the ability to make their own decisions. This creates tremendous human suffering.
MAID has been a positive addition to the list of possible ways for me to care for my patients. It's a gift to those who want the option of control: There's always an escape route if things get too bad. Sadly, many patients are very unaware that this option exists. They can't create a tool to ensure they get MAID when they want it.
The MAID deaths I’ve witnessed have been the easiest and most peaceful of my career. While most of my patients do not end up utilizing this option, more increasingly do.
Thank you for that question. I'm happy to address it through the chair.
I've heard a lot in the last hour about how to prepare people to sign advance requests, but in my view, and in the view of the medical literature on advance care planning, it is still not adequate consent, because you're lacking many elements of what you would need to know to consent to any kind of procedure.
In my experience, people sign all kinds of things without knowing exactly what they're signing. I've seen many of what we call in Quebec “protection mandates”, which are supposed to be just to name an alternative decision-maker. For some reason, they have started having end-of-life wishes inserted in them, which are so vague and general that they basically authorize any random doctor who meets you in the emergency room to decide that a treatment is superfluous given your condition.
It's very dangerous. When I ask the patients what they mean by it, they say it means that they don't want to be a vegetable. Essentially, it was not their wishes. It was a text that was given to them by somebody they trusted, and they signed it.
I would expect the same thing to happen regardless of all the safeguards that I've heard about in the last hour or so, because right now with the MAID regime in Canada, there are all kinds of people dying by MAID, horrifying the whole country. I can tell you even more stories from my own experience and from the experience of the people around me about how safeguards don't work and documents can be abused.
In my practice in geriatrics, I've seen documents abused all the time. I could tell you many stories, but I don't think I have more time to tell them right now.
Do you mean when it's being triggered and used? What's really important is we need to think of these differently in terms of the procedural safeguards and what the documents would look like and what the processes would be.
There are indeed failings in the advance directive regimes. I'm not looking to graft this on to those. I think what you would do is have the person write a document in collaboration with a clinician. It's a written arrangement—an agreement between people—and it would set out what the person considers to be intolerable suffering and objective criteria to determine whether those criteria are met.
For example, my intolerable suffering might be about a loss of personal identity, personal integrity and my own conception of dignity. What I couldn't do is just say, “When I no longer have personal integrity.” How can somebody else assess that? What they can assess, for instance, is if I say I can no longer name my spouse or children any day at all for two weeks straight. I could say that, or I could say that when I am at stage 7 dementia. That is an objectively assessable condition that I tie to my personal determination of what constitutes intolerable suffering.
What would happen is that somebody would say, “This person has lost decision-making capacity. There is an advance request. Here are the objectively assessable conditions for the provision. Have they been met?” The clinician would be able to assess that.
Thank you, Madam Chair.
I'll begin with a question for Professor Downie.
Let's take someone experiencing cognitive degeneration who makes an advance request for medical assistance in dying. Clearly, a time will come when that person begins to lose what we call the attributes of personal life, such as self-awareness and relational capacity, not to mention existential suffering. When they have reached the terminal stage of the illness, let's say Alzheimer's disease, they would be only biologically alive, in a mostly vegetative state.
When an advance request has been made, should one wait until patients have reached this ultimate state to consider medical aid in dying morally acceptable, or can it be administered at an earlier stage in the disease, based on criteria specified by the patients themselves?
There are several ways, and the first is to point out that the stigmatization in some sense goes in both directions. If you don't let people have advance requests, you're in a sense saying that people with dementia can't be trusted to make decisions for themselves in the future because they're too vulnerable to these external pressures and so on. I think that itself is stigmatizing of persons with dementia.
The second point is that it is the person's decision. It's not society saying, “Your life as a person with dementia is not worth living.” It is only for the person. I would never say to somebody else who has dementia that their life is not worth living; it is for the person to say whether it's intolerable suffering. That way, it doesn't carry a stigmatization, because it's internal.
With regard to supports and services, this is your opportunity to be bold. It is to be bold about the parallel tracks. You're a committee sitting in the House and the Senate. You have federal levers to improve the supports and services for people with disabilities and mental illnesses. My whole argument all along has been parallel tracks.
An individual has access to MAID while they're capable, or through an advance request. At the very same time, we put a huge push on. We shine a very bright light and demand accountability for improving the supports and services that are so desperately needed. They're not mutually incompatible. In fact, by having a conversation about MAID, we now have an opportunity for people to listen to a conversation about supporting persons with disabilities and mental illnesses in Canada. That's where I hope this committee is bold and figures out ways to use the federal purse and convening powers. You have all kinds of tools. Use those to fix the problems that are coming to light and that people are finally paying attention to. Don't constrain access to MAID, because you should never make individuals hostage to fixing systemic problems.
On irremediability, two things are going on.
One is for the patient and one is for the clinician. The patient decides what treatments, if any, they're willing to try. Then the clinician says, “Here's what I understand about whether that will or will not work.” That's a clinical choice, but whether the person wants to take the treatment is a moral, personal choice for the individual.
We have to think about incurability similarly. We have to think about them as having different roles, and ground them in the expertise each one has. The patient has expertise in what constitutes suffering to them, what their values are and what gives them meaning. The clinician has expertise in what a treatment can do for this condition—the trajectory, and so on.
On safeguards, I would say we don't have evidence that there is any risk of what you mentioned, in part because I have not seen the evidence some of what we've heard as described as harms and abuses. I don't believe it's there. It's how people are reading things. I think that with safeguards, we absolutely can.
The other thing I'd say is that we're already doing it. If we think we don't have adequate safeguards, then we need to be changing a whole bunch of other things we're doing, including advance directives, substitute decision-making in ICUs, and final consent waivers. All of those are premised on having safeguards that are adequate. Those same but enhanced safeguards will do the job.
Advance directives happen at a provincial or territorial level. They are largely about withholding and withdrawing treatments: People get to make a decision now about what treatment decisions they want made and how they want them made in the future, should they lose decision-making capacity.
It's important to note there are two kinds, instruction and proxy. Instruction is when I say, “These are the decisions I want.” They are written down. I tell you. Proxy is when I say, “I want my sister to make decisions on my behalf.” Nobody advocating advance requests for MAID is suggesting we would have proxy directives. We would only have an instruction. That's the provincial context.
The advance request context is federal. It's dealt with through the Criminal Code. It is only for MAID. It is only a written request developed and signed in the context of a clinician-patient relationship—probably multiple clinicians—over time, as the person is fully informed and as all the eligibility criteria for MAID are checked, such as voluntariness, having the information, and so on.
They cover different health care interventions and they have different rules. They are regulated in different ways, because the federal one would be regulated by the federal government and the provincial ones are done provincially, through colleges and so on.
Part of the end-of-life process is ensuring that patients are aware of what their options are and what they can choose from. It means understanding what their disease is, what they can expect from the disease, how that disease is going to progress, what kind of symptoms they're likely to experience and then, from the clinician's point of view, what can be offered to help with each of those symptoms.
That's why I said earlier that I think patients often don't know about medical aid in dying as an option. We know a lot about it because we're very invested in it and we're all here to talk about it, but the average patient—you'd be surprised—doesn't know that's even an option, and a lot of clinicians do not raise it. They wait until the patient has said the secret words about “this euthanasia thing”, and then they'll talk about it.
It's not informed consent when they don't have all the information they need to pick and choose what is right for them. People need time to think about all these options.
Yes. Thank you for that question.
I think people with dementia suffer if they're treated badly. It's like everyone. If you're badly treated, you suffer, and if you are cared for, surrounded by affection and surrounded by everything you need, then generally you don't. There are symptoms of dementia, such as agitation and so on, that we can generally manage. In some extreme cases, we cannot.
A lot of things have been said during this panel about not wanting to be that person with dementia. I think there's a lot of stigma there. People are saying, “My suffering now is to think of myself as being in the position of those people in the nursing homes, and I don't want to be that person.” That makes me very uncomfortable.
I don't see my patients suffer; I've seen lots and lots of patients with dementia, and it's very rare. Sure, you go through a bad time, and sure, hips we fix because it gets people walking again. We don't always send people to the emergency room from a nursing home. If they have a fever, we might treat them in the nursing home even if they die sooner of whatever infection they have, because the stress of going to the emergency room would be terrible for that person. It would make them more confused. They would maybe spend hours on a stretcher.
There are many things that would cause suffering to a person with dementia, but we don't have to do all those things. We do the things that we really think are in their best interests and that lead to their comfort. We're not going to do a triple bypass. We're not going to do many things that a person who has normal cognition could go through much more easily because they understand what's happening.
I think the concept of suffering is very subjective. It troubles me to hear people talk about my patients in many of the terms that have been used tonight about how “I don't want to be like that”.
I call the meeting back to order.
Welcome to the panellists. I'll take a minute to say a few things.
First, before speaking, please wait until one of the joint chairs recognizes you by name.
Second, I remind you that all comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly. This is for the interpreters. Interpretation in this video conference will work like an in-person committee meeting. You have the choice at the bottom of your screen of “floor”, “English” or “French”. When you are not speaking, please keep your microphone on mute.
With that, I would like to welcome our witnesses for panel three this evening.
We have, as an individual, Dr. Romayne Gallagher, clinical professor of palliative medicine at the University of British Columbia; we have Dr. Lilian Thorpe, professor at the University of Saskatchewan; and we have.... Perhaps I should say this in French.
We are also welcoming Dr. Laurent Boisvert, who is a physician.
Thank you for joining us.
We will begin with the opening remarks of the three panellists. You will each have five minutes. Try to stay within those five minutes. We will start with Dr. Gallagher, followed by Dr. Thorpe and then Dr. Boisvert.
Dr. Gallagher, the floor is yours for five minutes.
Thank you to the joint committee for allowing me to speak.
I'm a retired physician with over 25 years of experience in providing palliative care in all locations of care. I've been an attending physician and palliative care consultant to people with dementia, as well as physician director of long-term care and a physician leader in academic palliative care.
I cared for my elderly neighbour who wanted to stay in in her house where she lived alone, despite her dementia. She had no children or spouse, so we were her family. I was her power of attorney for the last four years of her life. She died at 96, having lived in the same house since she was eight years old.
With respect to advance requests for MAID, despite the compelling evidence of wanting to be able to make some choice, medical and social science literature reminds us that people are poor at anticipating what life would be like with a life-changing illness or disability. People adapt to illness and disability and adjust their needs for a decent quality of life. Many medical conditions have long and unpredictable courses. Suicidality caused by these conditions can last for protracted periods of time.
In jurisdictions where advanced requests are permitted, physicians have difficulty following advanced directives for hastened death because they cannot reaffirm consent and they cannot establish current suffering. Family members have the same conflicts and find it a burden.
I want to focus on the suffering of people with dementia.
People with dementia can self-rate their quality of life. We know that they consistently rate it higher than caregivers do. Cognitive abilities have little impact on their quality of life, but good relationships, social engagement and spiritual and religious beliefs help maintain quality of life. We do know, though, that losing functional ability, pain and depression can reduce quality of life.
A 2018 study of the lived experience of over 600 individuals with dementia revealed the importance of their physical environment and the people they interact with. A positive environment allows people with dementia to continue to participate in life, and it includes caregivers who facilitate retaining control and a sense of purpose. Through adapted physical environments like dementia villages, people with dementia can continue to walk outside and express their emotional, relational, spiritual and creative selves.
Technology can also aid in reminding them of their identity and memories. The fear of losing capacity and losing control over their lives may not be realized because they are still recognized and treated as a person.
Dr. Tom Kitwood was a researcher in maintaining personhood in dementia. He concluded that personhood is “a standing or status bestowed upon one human being by others.... It implies recognition, respect and trust.“ He described how our actions undermine the personhood of a person with dementia. These are actions such as conversing with others as if the person with dementia were not present, infantilizing, disempowering by not letting someone walk unsupervised, treating people like objects, and taking away control of every decision. It is our society's behaviour that contributes to the suffering of people with dementia and fuels the stigma supporting the idea that with dementia, a person dies inside a living body.
Those with money can buy adapted environments with supportive care. If we allow advance requests, those who can't afford adapted environments will have only an illusion of choice. They will choose between depersonalizing care or MAID.
Providing a palliative approach to care that focuses on maintaining quality of life and providing care that meets preferences of people is essential, yet a CIHI study in 2017 showed that only one in 20 people with dementia actually receives palliative care.
I wrote a brief to this committee that argues that those suffering without access to quality palliative care or who receive it only after they've requested MAID is a medical error. The error is not in receiving MAID, as the person may meet all the requirements. The error of omission occurs in the months before, when the pain, shortness of breath, anxiety and feeling of a burden to others began but was not recognized and addressed. This is an error, because we know that palliative care can help with this and improve quality of life.
Every chronic disease organization recommends timely access to palliative care. I want one of you to ask me how the federal government could achieve greater access to palliative care.
Thanks for the wonderful presentations I've heard so far.
I'd like to say I'm a geriatric psychiatrist. I see and work with people with dementia. I very much agree with many of these comments about personhood and developing environments where people can live productive and quality lives, even in dementia.
I think it is very clear that most people I know do want to have access to advance requests for MAID. I also think this is going to be really challenging. We're going to have to really think about those guidelines and how we're going to do this.
First of all, people really do change. I see people in hospital with my consultation service who years ago made an advance directive that is often not what they want anymore. They say, “That was then. This is now.”
People change. People don't necessarily understand what they adapt to over time, which is what Dr. Gallagher spoke to. Many really do change, and they adapt to stages in their lives, such as dementia, that they wouldn't have expected before.
These people are not necessarily the same people who asked for this. I think what we do in real life is look at balancing the current person with all of their needs. Somebody with a dementing process needs a lot of help with what they previously wanted. It's a balance. That balance is often discussed within a mixed group of people who then really think about all the issues that have to be thought about in making a very complex decision.
Practically speaking, I think in some cases it's going to be fairly straightforward to approve an advance request if a person still has some ability to say what they want. I mentioned that I've seen close to 700 MAID assessments. I am a MAID assessor and provider. Many of my patients with dementia in early stages do still have some ability to say what they want. Some of them do talk about wanting to have access to MAID. When they're in that early stage, even if they don't have fully informed consent, they may have assent. Those ones, I think, will be the ones we can deal with.
There are people who are in a chronic vegetative state at the end. They may not be suffering anymore, yet we will also find those reasonably doable for us as providers. We will find that we feel we can live with this.
The problem comes in people who have this gradual loss of capacity and insight into the dementia. My patients often say, “Actually, I don't feel so bad anymore. I'm not even sure I have dementia anymore”, as they progress. They may enjoy their environment. They no longer focus on developing dementia, because they don't really know they have it anymore. Those will be very difficult for us to deal with, as would those who develop a lot of agitation and resistance. It's hard to even get them to take their medications, let alone large amounts of oral medications for MAID, or get an IV started for MAID. Those will be highly difficult, and this would be highly traumatic to both family members and care providers.
I have a number of suggestions, and I put them in my written report. I think that in straightforward situations, such as when a person is making a suggestion consistently that they do wish to die, as will happen sometimes, or when a person is in a chronically vegetative state and their advance request is sufficiently detailed to support the situation, these requests could be approved by the usual trained and objective MAID assessors.
There are, however, going to be far more complex situations in which there is no consistent communication from a person saying they wish to die, or there is a lot of conflict among family members about whether the advance request was really going to be consistent in the current situation. In these cases, I think there needs to be a very different process with consultations with some of us, such as geriatric psychiatrists—as is my practice—a geriatrician, psychologists and so on. I would like to see evidence of ongoing, significant suffering, and no evidence that the person is actually consistently enjoying life. If a person is consistently enjoying life and enjoying activities, I would feel very uncomfortable with that as a MAID provider. I would like to see no resistance of any kind to the MAID assessment or provision, with people trying not to have the IV started or to take oral medications. I don't think any of us would feel comfortable then.
I think what this means is that we need interactive meetings among the care team, family members, health proxies and MAID assessors and that we work through this. Maybe there is an ethics issue there. Maybe there are a number of people, not just one or two, making these complex decisions. Maybe social work is there to help with counselling of family members who are very distressed.
I will just tell you that we do have a waiver of final consent. I've had two daughters sobbing in talking about this waiver, because they say they would feel like they would be killing their father. Those patients who have had conflictual relationships with family members are going to be the most distressed by this. There also needs to be an appropriately constituted end-of-life committee that could look at these complex cases. These are going to be really hard, and we're going to have a lot of discussion about this.
That's what I'm going to say. I'm sorry. It's very practical. I'm not going to be able to tell you all of the details in the other countries. I'm just talking to you about myself as a geriatric psychiatrist and someone who sees patients day in and day out. I wanted to talk about those practical aspects.
Thank you for having me.
I'd like to begin by thanking the Special Joint Committee on Medical Assistance in Dying for inviting me to testify in connection with its efforts to address the issue of advance requests for medical assistance in dying.
My name is Laurent Boisvert, and I'm a physician who specializes in family medicine. I worked as a general practitioner and emergency specialist for 35 years, and as a professor at the university-affiliated centre on Montreal's South Shore.
When the Act Respecting End-of-Life Care Came into force in Quebec in 2015, I made sure that medical assistance in dying would be available not only in institutions, but also elsewhere. I have been actively practising medical assistance in dying for seven years, which represents some 400 cases of euthanasia.
Before addressing the issue of advance requests, I would like to describe two cases of individuals with dementia for you.
I would like to begin with Mr. Yves Monette's case. I've used his name, because his story has been heavily covered by the media. Mr. Monette had frontotemporal degeneration, leading to varied atypical symptoms. In addition to temporarily losing control of his members, he would sometimes take a shower with his clothes on or go and take a walk outside in his nightshirt. Although he had formerly been very active and happy, a martial arts instructor and a security guard, he was now ill, isolated and unable to do anything. His life had become insignificant to him. He asked for medical assistance in dying many times, but owing to the legislative context at the time, meaning before March 2021, he was no longer eligible. The disease nevertheless made his life increasingly difficult.
I met him in April 2021, after reading a newspaper article about him. When I met him, I confirmed that his request was admissible, but as his death was not reasonably foreseeable, there would be a waiting period of 90 days. He immediately accepted, happy to know that he would no longer have to suffer this form of existence. In the same breath, he asked to donate his organs, because he was otherwise in excellent shape.
We met on several occasions, and he never changed his mind about his decision. Despite his dementia, he was capable of clearly reiterating his request until the very end. That's not the case for many people with this type of illness, as we will see in the second case.
He died serenely, although he was sad to go. He was surrounded by several friends and relatives. He was dressed in a uniform loaned to him by the Longueuil police and was wearing boxing gloves.
I now like to tell you about Ms. C, an 84‑year-old patient. She had always been active and happy, a mother who lived with her spouse. I met her in May 2021 in connection with her request for medical assistance in dying.
The previous fall, at a family gathering, Ms. C's children had noticed some bizarre behaviour. She was somewhat uninhibited, even though she had always been very prudish. She also said some things that were incoherent, but it was not too noticeable. She met her family doctor with one of her daughters and her spouse. After some examinations, she was diagnosed with Alzheimer's, a form of dementia, which was no surprise to anyone.
When I met the family, the patient understood her disease and explained why she did not want to stretch out her life uselessly until she would lose her autonomy in terms of everyday activities, and become a burden to her spouse and her family. She fully understood the nature of her request and its irremediable consequences, but wanted to take advantage of life for as long as possible. She therefore did not specify a date for receiving medical assistance in dying.
I told the patient and her family about the act and its limitations. The patient would have to be able to consent to medical assistance in dying until the decision was made to request it. That meant that she would have to be very closely monitored, because once it was becoming obvious that she was no longer capable of expressing her wishes, it would be necessary to proceed with medical assistance in dying. However, and here's the problematic issue, the current legislative framework would force us to steal some quality time from this patient and her family.
I told her family doctor about the situation and we monitored the patient closely, who remained capable of clearly stating her wishes for a while. However, everything changed quickly in only a few weeks. The patient saw her family doctor, together with her family, and she was no longer able to clearly state her wishes. She was confused, disoriented and even incoherent. She was no longer capable. As a consequence, she could no longer receive medical assistance in dying and would have to go through what she specifically did not want to put her family members through. Her illness led to a gradual state of decline. Her family members no longer recognized her and even worse, sometimes had to deal with a person who could be aggressive and unpredictable, or even a curled‑up body that could no longer interact with the outside world.
With respect to advance requests, I agree with Dr. Alain Naud, who presented his views to you along with those of the Collège des médecins du Québec, to the effect that the act should enable a patient, who has received a diagnosis of confirmed neurocognitive disorders or dementia, to submit an advance request for medical assistance in dying. This binding request, that no one can challenge, would have to specify application criteria, meaning the clinical status that would trigger the procedure. Only patients are able to specify what they are willing to put up with, what is unacceptable to them and what they would define as an unacceptable decline.
Enforceability would have to be defined and established by the appropriate health care authorities.
Enforcement would have to provide the possibility of an appeal by one or more proxies designated by the patient at the time of drafting the advance request. These would be responsible for triggering the procedure, together with the care teams, at the moment specified in the request.
In the absence of family members involved in the advance request, appropriate authorities would provide a recourse mechanism to trigger the procedure. In Quebec, the public trustee, who is a party to the levels of care, could perform this role.
Thank you for your attention and I hope you are courageous enough to move this important matter forward with a full understanding of the issues.
Thank you very much for the question.
I heard that comment. I think there is a huge challenge because of things I mentioned in my commentary. We know from about 30 or 40 years of research into effective forecasting that people tend to think things will always be worse in the future than they actually will be. We also know that people adapt as well.
I think it's very different from saying, “I'm nearing the end of my life. I want assisted dying over the next few days, but, if I should lose my capability, these are my wishes.” The average lifespan of people after a diagnosis of dementia is up to five years. In the case of the idea Dr. Downie mentioned—“If I don't recognize my family for two weeks, you can terminate my life”—how are we going to compel doctors to do this?
This is going to be an extremely challenging thing to work out. People change doctors, locations and provinces. This is going to be a nightmare, and I don't see how arranging a deal with one provider will last through a long trajectory of illness.
Thank you, Madam Co-Chair.
We heard from Dr. Gallagher in her opening statement that people are poor at anticipating what future medical conditions are like. Many witnesses have talked about the difficulty in determining consent.
Dr. Thorpe, our committee hasn't yet had your submission distributed to us, but we will look forward to reading it in detail. I appreciate your submitting it to our committee.
In your opening remarks, you urged our committee to really think very clearly about the guidelines that need to be set up, because people change and in some cases adapt to their new medical realities.
From a practical point of view in terms of what our committee may make recommendations on, if we permit advance requests for medical assistance in dying, for you as a practitioner, how often would you want to see someone be legislatively required to revisit their advance requests so that we can be sure that...? Is it every year, every couple of years, every three years? I don't know.
Is this something that we as a committee need to be checking in on so that people are being required to look at their advance requests to be sure this is something that they still want as time goes forward?
Thanks. That's a good question.
I think it depends on what's wrong with a person. If we go with Jocelyn's idea that we only have these for someone who's had a diagnosis, if somebody has had a diagnosis of dementia, then they probably need to redo this every year, because they will have decline every year, and I think it should be done.
If one didn't have the requirement for having a diagnosis, which I actually wouldn't rule out.... I think some people have a family history of very severe dementia, and they might want to indicate what they would wish at, say, a chronic vegetative state. That might be a very different thing. That might be a five-year thing, but once one has a chronically degenerative condition, very frequently.... It's even quicker if you have something like Creutzfeldt-Jakob disease, which is very fast and progressive. I think there are a lot of these very context-specific things that we have to think very hard about.
I don't think it's not doable, and I'm not saying that we shouldn't have advance requests; I'm just saying that we have to really think about this and think about the practicalities for those of us who are going to end up seeing someone walking around not knowing their family members but still enjoying life. How are we going to do this? Are we going to hold them down? I can't see any of us doing this.
What we want to do is to have a system where you....
We know that all provinces have to rely on accreditation of their organizations. Therefore, you can put in place standards and measures of the quality of palliative care. You can also enact symptom screening and distress screening in all chronic disease clinics.
I believe that doctors have great intentions, but they often aren't focused on symptoms; they're focused on disease indices and testing and so on. We need to hear from people. People will often rate very differently on a survey than what they will admit to their family doctors. We need to pick up suffering early. We need to have a system in place that ensures we are detecting it and addressing it early, before people are suffering to the point where they say, “My life is intolerable the way it is right now.”
It's my hope, knowing that this is within the control of the federal government, that in your role in reviewing the state of palliative care, you will take this incredible step to enforce a change in our system that will benefit everybody, no matter whether they have MAID or they have a natural death. I think it's very important.
I thank you.
I'd like to thank Dr. Gallagher and Dr. Thorpe.
And I'd also like to thank Dr. Laurent Boisvert.
Thank you for having testified this evening and answering our questions on an important, but very complex subject. We are truly very grateful. I'd like to thank everyone for having remained available at such a late hour, especially for those of you who live in the eastern part of the country.
Thank you very much. We very much appreciate your being with us this evening.
With that, I will remind the committee members that our next meeting is one week from today. It will be a three-hour meeting. As agreed upon at the beginning, we will reserve the third hour for in camera committee business.
Before we adjourn, there has been a suggestion that we extend the period for people to provide briefs, given the fact that our final report has been extended to October. I'd like to see a show of hands from people supporting allowing briefs to be presented up until May 30.
Does anyone have a problem with that?
I can't see everybody in the room, but I'm looking at—