:
Good evening. I would like to call this meeting to order.
[Translation]
Welcome to the meeting of the Special Joint Committee on Medical Assistance in Dying.
I welcome the committee members, our witness and those watching this meeting on the web.
My name is Mark Garneau, and I am the House of Commons joint co‑chair of this committee. I am joined by the Honourable Yonah Martin, the Senate joint co-chair.
[English]
Today we are continuing our examination of the statutory review of the provisions of the Criminal Code relating to medical assistance in dying and their application.
I'd like to remind members and witnesses to keep their microphones muted unless recognized by name by one of the joint chairs. Just 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 like an in-person committee meeting. You have the choice at the bottom of your screen of floor, English or French.
With that, I would like to welcome our witness for panel one, who is here to discuss MAID when a mental disorder is the sole underlying medical condition.
Welcome to Professor Jennifer Chandler, who is a professor of law at the University of Ottawa.
Thank you for joining us.
We'll begin with your opening remarks, Professor Chandler. You will have five minutes, which will be followed by a question period.
We'll go over to you, Professor Chandler.
:
First, thank you very much to the committee for having me here today. It's an honour to address you, and I hope the remarks I can contribute will be helpful to you in your consideration of a difficult issue.
As Mr. Garneau mentioned, my name is Jennifer Chandler. I'm a full professor of law at the University of Ottawa, where I teach health law and specialize in mental health law, neuroethics, issues around brain interventions and the law.
I am speaking as an individual, of course, and don't represent the university or the expert advisory panel of which I was a member, nor do I represent the views of the CCA panel, of which I was also a member.
I was thinking to myself what I could say in these opening remarks that would be of use to this group in light of what other witnesses before me have brought to you, and have done an excellent job bringing to you. I thought that perhaps, given that I'm a lawyer, I would speak from a legal perspective and talk about the question of discrimination, because this is invoked as a central issue in trying to decide what to do about eligibility of people with an SUMC, sole underlying medical condition, being mental disorder.
At the moment, as you know, the law excludes a particular category of people from eligibility, namely, those suffering solely from mental disorder. This exclusion is defined on the basis of a specific class of disability.
There are two arguments out there, which you have heard, about how this is or is not discriminatory.
One view holds that excluding a group of people is discriminatory when done on the basis of mental disability, because it withholds from them a benefit or an option that's available to others, and this is unjustified when they meet all the other eligibility criteria that others meet.
Another view holds that offering medical assistance in dying to people with disabilities, including mental disabilities, is discriminatory because it exposes them and only them, people with disabilities, to an increased risk of death by suggesting perhaps that death might be a good option in their circumstances and/or by making it easier for them to access death.
In other words, then, to summarize, in one case we have access to an option that's viewed as a benefit, which is unfairly withheld, and on the other hand access to an option, which is a harm, which is unfairly imposed. How does one reconcile these views?
I think one can be confident that people holding both of these views hold them in good faith and strongly believe in the justice of the view they're espousing with respect to discrimination.
In fact, as you've heard—I was watching the proceedings from Friday—people with lived experience hold these these opposing views as well.
I propose to offer a few thoughts from a legal perspective on how these opposing views, what's discriminatory and what is just or unjust in these circumstances, can be reconciled. Evidently, my view is a legal one and should be tempered with the insights of those with lived experience and those who provide care, and in recognition that others might differ with my reading of the cases and my interpretation of the law.
Essentially the Supreme Court of Canada has had to address this particular problem on multiple occasions in the past of whether differential treatment of a group with a disability is discriminatory. In those cases, it has noted the challenge of what it came to call the “difference dilemma”. In essence, what this alludes to is that in some cases to achieve equality, to promote dignity, it's necessary to treat people differently, whereas in others it's necessary to treat them in the same way.
To give you a concrete example from a case involving segregated schooling for children with severe physical disabilities, the court said that a separate or segregated stream of schooling could protect equality or violate equality depending upon the needs, capacities and circumstances of the particular child in question.
This difference dilemma means it's very hard to point to exact same treatment or differential treatment to really get at this question of what best promotes equality.
How then do we figure it out?
If you look at the range of questions that has come to the Supreme Court posing this particular type of problem in a range of cases, whether it's schooling or whether it's access to particular workers' compensation benefits for physical versus mental injuries, my reading is that the Supreme Court is quite uncomfortable with blanket attributions of a specific set of needs capacities and circumstances to a group as a whole. It is very much more likely to be comfortable with a regime, if it is possible to do so, that provides for individualized assessments to verify that any presumptions are in fact accurate in individual cases.
We come to the blanket exclusion of all people with mental disorders. This would seem to be a problem. This is a very heterogeneous group of people with very different needs, capacities and circumstances. The question I think for you is, do criteria in the Criminal Code, along with recommended measures that the expert advisory panel put in place, offer an adequate framework to do this kind of individualized assessment safely? I think so. I was a member of that expert advisory panel, so, of course, I would think that we had put something forward that could work, with certain caveats that I'd like to draw to your attention.
This question of adequate funding is a key safeguard. It's an adequate funding question in two directions. Adequate funding of social supports is key to ensuring that those who can be supported, whose suffering can be alleviated, will have the opportunity to have it alleviated. A good and compassionate society will try to do its best to help those who are struggling. At the same time, we have to note that there are situations in which just about any social supports will not be sufficient to alleviate intolerable suffering.
In a second way, adequate funding pertains to the kind of funding that's available to assessors and the infrastructure made available for assessors to do a careful and thorough assessment. The kind of thorough multidisciplinary assessment required here involves a long process and multiple people involved in coordinating a range of potential supports. This will take time and resources to do properly.
If those funds are not available, I see a twin risk. One, people will withdraw from providing assessments to people who are suffering intolerably, because they won't feel that they can do it properly, or conversely, some might do a rushed assessment with risk in the other direction.
I think the kinds of things we put forward in our report with respect to the infrastructure are quite important to consider and to put in place within the realm of what's reasonable and possible.
The other safeguard—
:
Thanks, Madam Joint Chair.
Good afternoon, Professor, and thank you very much for joining us.
We have limited time and I'd like to get through a couple questions with you, if I could. I'm going to read them to be succinct as well.
First, in my reading of the expert panel report, it appears that there's a contradiction I would like you to help me resolve. I'll paraphrase, but it says that the current legal framework can apply to MAID where mental disorder is the sole underlying medical condition, with no new legislation or additional safeguards, but it also says that irremediability in the case of MD-SUMC is difficult, if not impossible, to predict. The report fails to offer evidence that it is possible, or provide specific guidelines on how to determine it.
In order for a person to be eligible for MAID, irremediability must be determined. How do we reconcile this challenge? Without a clearly defined road map in determining that a person's mental disorder is irremediable, it would seem that MAID with mental disorder as the sole underlying medical condition is not compatible with the existing law.
:
As the law stands, if the one condition is a mental disorder, they wouldn't qualify at all. I'm saying that, as the law stands now, it's not a barrier as opposed to giving them access to the process.
Let me go back. You referred to some examples of Supreme Court of Canada cases where the Supreme Court dealt with discrimination in situations dealing with schools or receiving benefits. That's markedly different from terminating one's life, I would say, so I'm not sure that those cases are.... It's not apples and apples, if I can put it that way.
We get into this situation where, as you said, “irremediable” is a legal term, not a medical term. What we're talking about is whether a mental disorder is permanent and cannot be cured, which would allow a person to qualify for MAID. That's the heart of what we're talking about.
In order to do that, you need to have certain protections built into the system, so you need to be confident that doctors assessing somebody with a mental disorder are as capable of making that assessment as doctors who are dealing with somebody who has cancer, to use the example I referred to earlier.
Are you confident, based on your experience through the panel process and whatnot, that there are safeguards in place enough that it will work with people with solely mental disorders?
:
This is a difficult question, but a critical one.
Hon. Pierre Dalphond: But you're an expert.
Prof. Jennifer Chandler: I think this is sufficiently new to Canada and excites sufficient concern amongst the public that it would be important to try to harmonize to the greatest extent possible the process and the safeguards across the country. In a federal state, that's difficult. I was rereading again what we said about the interpretation of these legal terms in the Criminal Code, asking myself if something could somehow be put into the code about those interpretations. We define many legal terms. Could we try to define some of those terms more clearly within the Criminal Code? That would be helpful, but it would be awfully difficult, especially given the nuance that we've tried to explain in terms of the meaning of “incurable”, “irreversible” and so forth. I don't think it's impossible, but it's a possibility.
Short of that, I don't think it's possible to put a lot into the regulations because the current code delegates the power with respect to monitoring. Perhaps a greater delegation could allow for more detail to be put into the regulations under the Criminal Code. That might be another way, but of course, then you run into the difficulty of the federal government starting to do too much that looks a little too much like health care. You have, in the Government of Canada, many of the best Canadian constitutional lawyers who can advise you on just how far you can go in terms of that.
That leaves this: Where else should it go? If we leave it to the provinces, the provinces may not be consistent. They may take varying approaches. I think that a lot can be done by asking for professional associations, for example, of psychiatrists, of MAID providers and so forth to promulgate guidelines, because these offer a very important regulatory effect. Even if they're not laws, people who don't abide by what is clearly the standard of care expose themselves to malpractice claims and all sorts of things.
There are various ways to impose law without having it in the Criminal Code. The question is this: Can you get all those things properly enacted to apply nationally? I believe there are steps well under way to do that just now with CAMAP and with others. I think that's another way to provide the kind of cross-country protection that would be advisable here.
:
We have done some looking at what's done in the other jurisdictions. It's taken me back to the days of the CCA report in 2018 where we looked at this in a fair amount of detail. We looked at this in this report as well.
I think some of the concepts that we have here were borrowed from those other jurisdictions, such as the idea that in addition to capacity, we would want a request to be well considered, for example. This is suggesting that something in addition to capacity is required, something that is sufficiently stable and is not fluctuating too much over time. It's concepts like this.
We suggested that this idea of “well considered” should mean the person shouldn't be able to just reply, “Yes, I understand the information here.” They should be genuinely open to the possibility that a given treatment might actually help them.
These are the sorts of ideas that we've taken from looking at the way things are done in these other jurisdictions.
In addition, the Netherlands, I believe, has a committee that looks ex post at the cases, analyzes them and provides reports and practice recommendations. These are things we looked at as useful, which we could adopt here.
Earlier, I said that the recommendations in the report were guidelines of sorts. In fact, in each of the recommendations, they use the verb “should”. If it were considered as such, it could solve a number of problems.
Let's take recommendation 10. Even in the psychiatric expert community, there is resistance. The Association des psychiatres du Québec says we should go ahead, while psychiatrists have told us the opposite. This has led to Quebec deciding not to move forward on mental health cases.
In this recommendation, it is stated that it is imperative that the competent assessor, who is a psychiatrist, be “independent from the treating team/provider”.
Is this realistic, given the resources available, especially in the regions? Shouldn't this be more flexible? If it were more flexible, would it diminish the legitimacy or rigour of the assessment exercise?
:
Good evening, and thank you for asking me to present today.
I should mention that I practised as a family doctor in northern Ontario before qualifying as a psychiatrist nearly 50 years ago. In 2014, I became a member of the Order of Canada. I am also a member of the Canadian Psychiatric Association working group on MAID for mental illness, the Canadian Association of MAID Assessors and Providers, and the University of Toronto Centre for Bioethics. As mentioned, I'm a senior scientist at the Toronto General Hospital Research Institute where I conduct research, including research on MAID. I have assessed over 300 MAID applications. I presented to the Senate committee on MAID in February 2021. My opinions are informed by my affiliations and experience, but I speak to you today in my personal capacity.
As a member of the expert panel on MAID and mental illness, I endorse all 19 recommendations, but I'd like to highlight now a few specific ones based on my personal experience in practice. The recommendations I do not comment on are equally important, but my time today is limited.
Expert panel recommendation number 1 is about collaboration between authorities. It's essential that federal, provincial and territorial governments work to facilitate collaboration between physician and nurse regulatory bodies in the development of standards of practice for MAID. I understand that substantial government and regulator work on MAID for mental illness is currently under way and that two sections of the MAID CAMAP curriculum have been written, reviewed, and are currently being revised. I know that other professional organizations are offering MAID education in various formats. As pointed out, the looming March 2023 deadline is a very powerful motivator.
With respect to recommendations 2 and 3, establishing incurability and irreversibility, clearly, MAID assessors must consider the severity and duration of illness, treatment attempts, outcomes and other evidence-based treatments that may improve the patient's condition while weighing their likely benefits and the burden. This will involve conditions lasting for many years with many multiple attempted interventions. It's my strong opinion that this determination should be a shared one between a psychiatrist, in the case of a mental disorder, and the patient and not only the patient's decision. This is clearly specified in the Netherlands' standards of practice where physician-assisted death for mental conditions has been available for almost 20 years, and where in 2020 there were 95% of physician-assisted death requests for a psychiatric disorder rejected. In fact, completed cases with respect only to mental disorders comprised only 1.3% of all physician-assisted deaths in the Netherlands.
A clinical example I can give you is a patient who insisted that only treatments based on natural plant products could be used, and I accordingly felt he did not meet the MAID criteria.
With respect to recommendation 4 related to suffering, while enduring and intolerable suffering is subjective and determined by the patient, it is also important that the MAID assessor or provider agree from a realistic perspective. For example, I assessed a middle-aged woman with mild osteoarthritis who stated that her suffering was intolerable because she was raised in the tropics and was nearly always cold in Canada, which aggravated her suffering. Clearly, I did not feel this met the criteria.
Recommendations 6 and 7 are on means to relieve the suffering. Clearly, multiple safeguards should always be seriously considered, including medical, psychological and social supports. I recently assessed a cancer patient who was also very depressed. Antidepressant medication and referral to palliative care resulted in her withdrawing her MAID request.
With respect to recommendations 10, 11 and 12, relating to independent assessment with an expert, involvement with other health care professionals and significant others, in the cases of MAID-SUMC, this should be a psychiatrist, in my opinion, independent of the treatment team to avoid bias.
With respect to recommendation 16 on prospective oversight, again, this is vital, in my opinion, for many track two cases, many of whom have comorbid mental disorders that have been poorly treated. This process is not to make judgments of eligibility, but rather to ensure that the assessments are in compliance with legal and professional standards. This should not result in lengthy delays, but should be an added safeguard by improving quality, safety and timely practice feedback to support patients and practitioners.
Recommendation 19 relates to research. As a senior scientist, I believe that regular and targeted investigation-initiated research on questions relating to MAID should be funded. Research in the Netherlands has informed revisions to their physician-assisted death safeguards and have been very important.
In closing, I want to emphasize the fulsome discussion of all recommendations and their salient related issues was conducted during the many hours that the expert panel, its subgroups and individuals met. Various interconnected safeguard mechanisms were available to us and for your consideration. These include legislated safeguards, professional standards, guidelines and education, each of which plays a unique, interrelated and essential role.
Thank you so much. I look forward to your questions.
:
Thank you, Madam Chair.
Good evening, everyone. I apologize for being late; I had some technical issues.
I would like to begin by greeting the joint co‑chairs, the Honourable Yonah Martin and the Honourable Marc Garneau, as well as all the members of the Special Joint Committee on Medical Assistance in Dying. Thank you for inviting the Association des groupes d'intervention en défense des droits en santé mentale du Québec, or AGIDD‑SMQ, to share its thoughts on the possibility of allowing medical assistance in dying owing to mental health problems.
At the outset, I would like to make it clear that the AGIDD‑SMQ never uses the terms “mental illness” and “mental disorders”. For us, these are people experiencing a mental health problem. So that is the term I will use.
Our association was founded in 1990, and its mission is to fight for the recognition and exercise of the rights of people living with or having experienced a mental health problem. In doing so, the association has acquired a unique expertise in the field. The AGIDD‑SMQ takes a critical look at mental health practices and is involved in their renewal. The collective voice of people living with a mental health problem is at the heart of our practices; I would even say it is part of our DNA.
In the wake of the decision in the Truchon and Gladu case, in September 2019, medical assistance in dying for mental health problems became a matter of consideration, and even more so when, in January 2020, the Quebec minister of health and social services announced that, as of March 12, 2020, medical assistance in dying would be accessible for mental health reasons. That announcement created a major shockwave. Of course, the pandemic put a sudden stop to any reflection or consultation on the subject. You know something about that because it was the same scenario at the federal level.
Not admitting defeat, in the fall of 2020, the AGIDD‑SMQ decided to launch a consultation with its member groups, which are mostly made up people living with a mental health problem. For the association, it was essential that those affected by this issue be the first to give their opinion.
To date, we have not been able to hold a meeting with our members to discuss this issue, which is so sensitive and full of uncertainties and questions for many of them. On the other hand, some member groups were able to consult their members. It is the fruit of their reflections that we have gathered in the brief “Entendre. Écouter. Prendre en compte la parole des personnes vivant un problème de santé mentale. Rien sur nous, sans nous.”—hear, listen, take into account the voice of people living with mental health problems; nothing about us, without us. We submitted this brief to the Quebec MPs who were members of the Select Committee on the Evolution of the Act respecting end-of-life care in August 2021, and we have submitted it to you, as well.
Three findings emerged from this consultation. First, there is a lack of understanding of what the practice of medical assistance in dying is. Second, people are seeking help to live with dignity and need hope. Finally, people with mental health problems need to be consulted—they want to be consulted—and involved in medical assistance in dying for mental health reasons.
Our association does not have an official position because, as I just said, we have not been able to meet to discuss it. On the other hand, for more than 30 years, the AGIDD‑SMQ has been at the forefront of denouncing abusive or discriminatory situations against people. Since the ruling in the Truchon and Gladu case, we have spoken out to denounce the double standard between the seriousness given to physical health problems and the ignorance of the suffering experienced by people with a mental health problem.
The stigma and paternalism surrounding mental health problems make it difficult to believe that a request for medical assistance in dying can be made “consciously” in these circumstances. When a psychiatric diagnosis is made, the person concerned loses all credibility. Moreover, a number of people have told us that they feared that if they requested medical assistance in dying they would be hospitalized against their will, as they would then be considered dangerous to themselves or to others.
Who is in a better position to judge the sustainability or unsustainability of suffering than the person living with persistent and intolerable suffering? Deciding to die with dignity is legitimate, and accepting it is a matter of respect for the person. We believe that every individual should have the right to make choices about his or her own life, especially when those choices closely affect human dignity.
Five minutes is a short time to talk about such a complex and important topic.
I will be happy to take the time to discuss this issue with you.
Thank you.
:
Thank you very much, Co-Chairs.
Thank you for coming to present to us this afternoon.
I really want to focus on something that has been a recurring theme throughout this whole question on mental illness being a sole underlying condition. Inherent in this, from everything I've heard, are two very important things that I took away from the discussions of everyone else who has talked to us.
One of them is that this has to be done on an individual case-by-case basis. One cannot set blanket laws and blanket decisions for people. In fact, the whole Supreme Court decision on this issue said clearly that this had to be a case-by-case basis, because we all know—and I happen to be a physician—that when you deal with a patient with illness, even physical illnesses....
Let's just look at physical illnesses for a moment. Fifty people with the same physical illness are not going to respond to treatment in the same manner. We have to understand the nature of the individual when making these decisions.
The second piece that I took away from this is that there seems to be a huge level of discrimination against people who have mental illness as a sole underlying condition. The idea that people with mental illnesses do not have compos mentis, the ability to make decisions or to decide what is intolerable suffering for them and, working with a physician, would be able to come up with a decision that is reasonable for them....
We keep talking about blanket decisions and whether we should make a generic decision about this or that. I'd like to know your position on that situation. Should we make blanket decisions, legislative or otherwise, or should we deal with this on an individual case-by-case basis? Should we try not to discriminate between mental illness and physical illness?
I'd like Dr. Stewart to answer first, and then perhaps Ms. Provencher would be able to answer.
:
Thank you so much, Madam Co-Chair.
I want to thank both of our witnesses for helping guide our committee through this study.
Ms. Provencher, I'd like to start with you.
You were talking about the advocacy work that your organization does. Our previous witness was talking about the Charter of Rights and Freedoms and how it applies, such as section 7, which says that everyone has the right to life, liberty and security of the person, and also section 15, which says that everyone has the right to be equal under the law.
You know more than anyone around this committee table that a high degree of stigma exists in our society when we are talking about people who suffer from mental health conditions, as you like to say. Your organization is not taking a position one way or another. Maybe you can put your answer in the context of those charter rights, the case-by-case basis and how important it is to try to combat that stigma and to understand that people who are living with mental health conditions do have that agency and that capacity.
Is there anything more that you want to add to this conversation so that not only this committee understands the issue, but also the wider Canadian public that is listening to this?
I don't know if I would go that far. As you said, the Quebec Charter of Human Rights and Freedoms and the Canadian Charter of Rights and Freedoms include the sections you mentioned and the issue of discrimination. It is the decision in Truchon and Gladu that would really provide the main support for these two sections of the charter.
As you know, just because I have a mental health disorder, that does not mean that I lose my ability to consent. I am able to consent until there is proof to the contrary. As a society, we will therefore have to consider persons with a mental health disorder as being able to make decisions, even serious decisions, such as making a MAID request. It will take a lot of work to get there though.
The Association des groupes d’intervention en défense des droits en santé mentale du Québec, AGIDD-SMQ, maintains that the best approach would be for people with mental health disorders to speak out publicly. For my part, I have worked with people with mental health disorders for 30 years, and I can guarantee that they are like you and me. They are people dealing with emotions and problems. Who doesn't have problems? Our view of people with mental health disorders is fundamentally discriminatory because we consider them unable to make decisions.
How can we change that view of people with mental health disorders?
We have been working on it for 30 years. Including these people in legislation such as this, putting them on the same footing as all Canadians who have rights, would in my opinion already be a step in the right direction.
Thank you also to the witnesses.
My question is for Ms. Provencher.
I read with great interest the brief you tabled in Quebec's National Assembly, in which you present your group's position. I have the recommendations in front of me. One of your conclusions was that people with a mental disorder should not be excluded from accessing MAID, as that amounts to stigmatization and discrimination.
In your brief, you recommend establishing standards, training and social measures, as well as clearly defining the parameters. On page 40 of your report, you talk about criteria and parameters.
After reviewing the report of the Special Joint Committee on Medical Assistance in Dying, would you say that the proposed parameters are sufficient?