THE STANDING SENATE COMMITTEE ON LEGAL AND CONSTITUTIONAL AFFAIRS
EVIDENCE
OTTAWA, Friday, November 27, 2020
The Standing Senate Committee on Legal and Constitutional Affairs met with videoconference this day at 10 a.m. [ET] to give consideration to the subject matter of Bill C-7, An Act to amend the Criminal Code (medical assistance in dying).
Senator Mobina S. B. Jaffer (Chair) in the chair.
[English]
The Chair: Honourable senators, I declare this meeting in session. I am Mobina Jaffer, a senator from British Columbia, and I have the pleasure of chairing this meeting. Today, we are conducting another hybrid meeting, the last of our five days of marathon hearings. Thank you, again, senators, for your patience, as we adapt to this new way of holding our meetings.
As I said earlier, senators, we have truly run a marathon this week, with 81 witnesses, and we’ve tried to achieve balance by hearing from witnesses from all points of view.
Senators, thank you very much for your support. I also want to thank the clerk of this committee, Mark Palmer, and the great team he has behind him that has been supporting us through this very quick and big task of having 81 witnesses in front of us in one week with very little notice. I would like to thank the clerk and his team on all our behalf.
[Translation]
I remind you that when you speak, you must be on the same channel as the channel for your language.
[English]
Senators, I will refresh our memories that it is four minutes per member for questions, and I will do my very best to get through all of you.
It is now my pleasure to welcome our first panel for this morning, with Dr. K. Sonu Gaind, Associate Professor, University of Toronto, and Dr. Scott Kim, Senior Investigator, Department of Bioethics, National Institute of Health.
[Translation]
I would like to take a few minutes to introduce the members of the committee participating in today’s meeting: Deputy Chair Senator Batters, Deputy Chair Senator Campbell, Senator Boyer, Senator Carignan, the critic for the bill; Senator Cotter, Senator Dalphond, Senator Dupuis, Senator Boisvenu, Senator Keating, Senator Petitclerc, the sponsor of the bill, Senator Gold, and Senator Plett. We also have with us today Senator Kutcher, Senator Pate, Senator McCallum and Senator Miville-Dechêne.
[English]
In the name of the members, I would like to welcome you all, and I would like to tell the panellists that we are looking forward to hearing from you. I know that you had to prepare in a short time, and we appreciate your effort. We will start with Dr. Sonu Gaind.
Dr. K. Sonu Gaind, Associate Professor, University of Toronto, as an individual: My name is Sonu Gaind. I’m Associate Professor at the University of Toronto and Chief of Psychiatry at Humber River Hospital. My clinical expertise is psycho-oncology and I am the physician chair of our hospital MAID team. Thank you for this opportunity to present to you.
Mental illnesses afflict up to one in five Canadians every year, with 8% of adults experiencing clinical depression at some point in their lives. Mental illnesses change how a person thinks and feels, and can be as grievous and intolerable as any physical illness. Yet, Bill C-7 proposes excluding mental disorders as the sole basis for MAID. Why?
People have diverse views on MAID. All opinions should be respected, but any compassionate society should set policies based on best available evidence. We need only look south of us to see what happens when wishful thinking and ideology drive policy. And no matter how many times an evidence-free opinion is repeated, it does not transform it into fact.
Here is the evidence.
MAID in Canada is based on having a medical condition we can predict, in advance, as being irremediable. The fact is we do not know how to predict irremediability in mental illness.
Some have suggested the unpredictability of mental disorders is no different than that of physical disorders. This is simply untrue. The disorders before the courts that all MAID rulings are based on are far more predictable than mental disorders. While some other physical disorders can be unpredictable, expansion advocates rarely point out the simple fact that we do not understand the pathophysiology of almost any mental disorder. It is a false equivalence to equate the unpredictability of illnesses like cancer, neurodegenerative diseases, or disorders with known underlying biology, with mental illnesses that we lack fundamental understanding of.
So if those with mental disorders would not be getting MAID for something we could, with any honesty, predict as irremediable, what would they get MAID for?
We know psychosocial suffering increases both the risk of getting a mental disorder and the suffering from it.
We know that, unique to mental disorders, suicidality, guilt and hopelessness can be symptoms of mental illness. While people can feel suicidal for various reasons, no physical illness I’m aware of has the wish to die as part of the actual diagnostic criteria.
Expansion advocates fail to point this out when they call for everyone being treated the same.
They also assure us that vulnerable groups do not disproportionately seek MAID. While true for North America, where there is an equal gender balance and those seeking MAID tend to be better off, well-educated and also Caucasian, that is when MAID is for those who are dying; people who have lived well and want to die well. Evidence shows it is a different group who seek MAID for mental illness, with twice as many women as men in those situations seeking MAID, and patients suffering from unresolved psychosocial stressors.
That’s some of what we know. What about what we don’t?
Evidence shows we do not know how to distinguish between those seeking MAID for mental illness from patients with suicidality as a symptom of mental illness.
In short, evidence shows that there are significant differences with mental disorders that warrant treating them differently for MAID. Failing to do so would be discriminatory.
With all these realities, as recent past-president of the Canadian Psychiatric Association, it has been highly disturbing to me that the CPA has taken a position, without any member engagement or evidence, suggesting it would be discriminatory not to permit MAID for mental illness. Remarkably, they have done this while admitting they have not reviewed how or whether irremediability can be identified. Talk about putting the cart before the horse.
Some are suggesting the issue is simply lack of consensus and propose a sunset clause on the exclusion of mental disorders to allow time to develop standards. The issue is not lack of consensus; the issue is lack of evidence about whether irremediability in mental disorders can even be predicted. If CPA is putting the cart before the horse, a sunset clause would be putting the cart before the horse without even knowing if the horse exists.
We talk about the terrible stigma and discrimination faced by those with mental illness. This is not a reflection of our friends and loved ones being weak or inferior. It is a reflection of us, as a society, implementing discriminatory policies and turning a blind eye to the realities of mental illness.
Pretending there are no differences between mental illness and physical illness for the purposes of MAID borders on — and I think I am qualified to say this — delusional. It is not about infantilizing anyone or removing their autonomy. People themselves wish to continue living when they improve. It is about avoiding discrimination by ensuring we don’t set evidence-free policy, exposing our loved ones to arbitrary assessments with no standards, that can lead to their premature deaths. I’ve limited my opening remarks to five minutes. You’ll see in my brief I have six specific recommendations. I look forward to the chance to speak to those in the question and answer period. Thank you.
The Chair: Thank you very much, Dr. Gaind. We appreciate your presentation. We will now go on to Dr. Scott Kim.
Dr. Scott Kim, Senior Investigator, Department of Bioethics, National Institute of Health, as an individual: Thank you, Senator. It is a privilege. I appreciate this opportunity to speak with you. I was told that my initial comments could be 10 minutes, so that’s what I will keep to. I submitted my speaker notes in PowerPoint form. The first three pages are just background. I should note that I only represent myself, as an individual and as a researcher, not my employer in any way. I think that’s very important to note.
I will start with slide number 4, if you happen to be following, and I will go from there. The first point I’d like to address is this issue, that somehow psychiatric MAID — that’s the term I will be using for what we’re talking about so that it will be quicker to refer to it — is just some type of a cutting-edge human rights cause. I would say, no, it is the opposite. I want to point out that Australia and New Zealand have both recently passed laws —
The Clerk: Dr. Kim, we have to stop for a second. I don’t think we have translation.
Dr. Kim: Thank you for this opportunity to speak with you. It is a real privilege. I have submitted my speaker notes in PowerPoint form, and I will start with slide 4. The only thing of true relevance in the first three, which describes my background, is that I am speaking only as an individual citizen and researcher, not in any way representing my employer.
I will start with slide number 4. The very first point I would like to make is that I’m going to use the term “psychiatric MAID” as a shorthand, because I’ve been asked to bring some international, as well as specific focus on MAID when it is performed primarily on the basis of a psychiatric disorder.
Is this a cutting-edge human rights cause? I would I say that it is the opposite. The reason I say that is because Australia and New Zealand recently passed laws that permit MAID, but in those laws, they specifically and explicitly exclude MAID that’s based solely on psychiatric disorder or disability. UN Special Rapporteurs submitted a report to the Human Rights Council that is consistent with this view. I should add that psychiatric MAID has low approval even in places where it is permitted. Only a minority of the Dutch public and medical doctors, including psychiatrists, approve of the practice. Similar data can be found in Canada as well.
Why is this the case? Well, I think that Dr. Gaind already briefly alluded to this, very powerfully, but let me just say that it is because end-of-life MAID and psychiatric MAID involve fundamentally different decisions. End-of-life MAID is an exceptional approach to a universal experience, that of dying, and it is an approach taken by — based on data — relatively privileged and wealthy countries. These are folks who actually want to live.
I am going to repeat that. By and large, these are people who want to live, who in dying want to choose how they die.
Contrast that with psychiatric MAID, where we are talking about a sub-population of people with mental disorders who feel they do not want to live, even though they are not dying. Such persons have always been regarded as highly vulnerable and deserving of special resources and protections in civilized societies. This is why these new laws, as well as the UN’s human rights experts, have tried to protect this group. Also, it is important not to project data from the former end-of-life MAID practices, and try to project it into what would happen with psychiatric MAID. This is an incorrect use of evidence.
I would also like to point out that I am speaking to a difference between instance and population. Good policies are not based on idealized, especially difficult or grey-area instances. What I will be speaking to is the effect of the practice on a population. Hopefully, we will use direct data, as available — and these are data from the Netherlands where actual practice of psychiatric MAID occurs. I should note that the Netherlands is a useful test case because they have excellent, accessible health care, as well as having a more transparently regulated MAID review system than other countries.
So what do we find? Who requests and receives psychiatric MAID? Mostly it is the same group of persons whom mental health professions are careful to monitor and treat for suicidality. People with personality disorders — the majority have personality disorders — depression, trauma histories and anxiety disorders. People who need support to shore up their coping skills. The majority of these are socially isolated and lonely. These are some quotes made by doctors who provided euthanasia to these patients:
The patient indicated that she had had a life without love and therefore had no right to exist.
The patient was an utterly lonely man whose life had been a failure.
Most of these patients also had a history of suicide attempts, and more than 70% of people who receive psychiatric MAID are women. This is a robust, consistent finding across countries over time. This is the same ratio as suicide attempts in people, where attempts are two to three times higher in women in these countries, whereas the completion rates are higher in men, which reflects the fact that we are talking about a population at risk for suicide.
Psychiatric MAID will involve unanticipated situations, as in the case of a healthy woman who received euthanasia for a prolonged grief disorder 12 months after her husband’s death, based on a diagnosis of prolonged grief disorder. This disorder does not appear in the DSM, but it is currently a much-studied disorder and there is a dispute about how long you have to have the symptoms. Some experts believe you need 12 months of symptoms. So there is no science to support the view that her condition was irremediable. I am giving you that as a striking instance. Over a quarter of psychiatric MAID occurred in people with some form of psychosis. Surprisingly, autism spectrum disorder has become a relatively common basis for MAID in Belgium, for instance; up to 19% in a series of 100 patients.
Will capacity evaluations be rigorous? When we are discussing what they should be like, people say it must be rigorous, but when you look at the practice, doctors exercise tremendous leeway. In our study of the cases, we found that over half the time, doctors simply assert that the patient is competent. For example, even in the following case, that is all we saw. A woman in her 70s who had schizophrenia since childhood who felt:
. . . her head was continuously occupied by voices . . . commenting on everything and commanded her to do things. She felt like she was staying in some sort of labor camp and ‘was possessed by the enemy.’
Neither her doctor nor psychiatrist would agree to perform MAID. She received it at a specialty clinic dedicated to the practice. We also found instances where doctors acknowledge that the patient doesn’t have all the abilities relevant for capacity, but they still deemed them competent to go ahead with MAID.
Irremediability is a highly important, crucial criterion. Even when it is an objective medical criterion, where people have to go through reasonable treatments, as in the Netherlands, 56% refuse it, yet are provided MAID. Twenty per cent are never hospitalized. When we look specifically at people with personality disorders, because they are such a prominent group, we find that sub-specialist involvement is rare, either in treatment or evaluation. Over a quarter, 28%, do not receive what we would consider standard treatment, which in personality disorders is psychotherapy. Case reports don’t reference data or scientific studies about irremediability in these reports, because the science is thin and is not supportive. It is largely done based on clinical impressions, quite frankly.
Now, turning to Canada, if irremediability is subjectively defined as in Canada, functionally I think it is important to point out that this makes the doctor or health care practitioner an instrument of a patient’s suicide without fully addressing what makes the patient so vulnerable, when they perceive things like: “I won’t get any better, my life is worthless, there is no other option, et cetera.” This is a very stark conclusion and implication if it is legalized with the current settings.
Psychiatric MAID requests are not stable. I presume somebody has presented this, but in a case series of 100 people who were deemed competent and intolerably suffering due to refractory conditions, 38% withdrew their request, and after one to four years of follow-up, 57 were still alive. Note that 48 patients were described as “managing with regular, occasional or no therapy.” These were people who were deemed at the beginning as competent and intolerably suffering due to refractory conditions. It is not a surprise that doctors disagree about eligibility. What eventually happens is that, because only a minority of doctors are willing to do it, the practice funnels to those doctors with the minority views.
In the cases we described, close to a third had been refused in the past. Even in cases where they are performed, what happens is that a quarter of the time there is disagreement outstanding, but in half those cases, the general practitioner’s view is taken and accepted over the psychiatric consultant’s opinion. It has gotten to the point that over 9 out of 10 psychiatric cases in the Netherlands occur in specialty clinics, whose only purpose is to perform MAID, with no prior relationship with patients, no palliative care and no other treatments offered.
In actual practice, what does psychiatric MAID ask doctors to do? They have to do one or the other: prevent suicides of especially vulnerable patients, or provide a definitive means of ending the lives of those same vulnerable patients. To do so based on clinical and personal impressions — not scientific evidence — and applying broad legal — not clinical — criteria that are not well defined, by providers and doctors with views I would remind you, at odds with the majority of their peers, the public and UN human rights experts.
In conclusion, recalling that — some people say, evidence from Netherlands is not generalizable — I would say, these are the actual cases. This is the best data we currently have, because this is about people who received it in a setting where it is more closely monitored with more resources. If this is legalized in other settings, I would say that the following conclusion is a very reasonable one. There would be significant risk of wrongly ending lives of many patients because either they are not competent and/or suffer from a remediable situation disorder or perception, and/or who would have changed their minds about MAID with time and treatment, and maybe regained a will to live. Thank you.
The Chair: Thank you, Dr. Kim.
Before we go to questions, I neglected to mention two senators who are also here on the committee with us: Senators Boyer and Frum.
Now we will go on to the first question from Senator Petitclerc, the sponsor of the bill.
[Translation]
Senator Petitclerc: I have a question for Dr. Gaind first, and if time permits, I would ask Dr. Kim the same question.
From the beginning of this week, we have heard from several witnesses who have expressed various concerns about mental illness. I would like to quote Dr. Gupta, who said this a few days ago:
In fact, at present we do assess capacity to consent to MAID in people with mental disorders and comorbid physical conditions. Presumably, if the method works in one circumstance, we would need a specific reason that shows it does not work in the other.
I would like to hear from you on this topic. What do you say to this, Dr. Gaind?
[English]
Dr. Gaind: I did not have the translation, but I will try to do my best. I believe you were asking about comments that Dr. Gupta may have made about how we already assess capacity in challenging cases.
Senator Petitclerc: Exactly, yes. Allow me spontaneous translation here. Basically, if we are able to assess capacity when it is not only a situation of mental illness, we should be able to do it when it is only mental illness that is the case. I wanted to hear you on that.
Dr. Gaind: Thank you for the question. As I mentioned, my background is in psycho-oncology, so I deal with dying patients and patients who may have both end-of-life issues and cognitive issues. In psychiatry, and especially in consult-liaison medicine, we frequently assess challenging cases of competence and capacity. So that is true; that is something that is part of our skill set.
Now, that does not necessarily mean that it translates, one for one, for every MAID assessment. Part of that reason is that capacity is not a global issue. We don’t determine that a patient either is fully capable or is not; it is case by case for the decision being made.
So one of the things to remember is that the decision being made for MAID is when somebody no longer wants to live. There are multiple reasons that someone may not want to live. In the current MAID framework, when death is meant to be reasonably foreseeable — and in any of the terminal MAID frameworks — typically what we see is that people want MAID to avoid a painful death. As we expand the criteria, and once you draw up reasonably foreseeable natural death and you look at other conditions, all sorts of other life suffering comes in. Then we find people want death to avoid a painful life.
That introduces an entirely different complexity when we’re trying to weigh how cognitive distortions of depression can impact someone. Those are things that make me feel “the world is terrible; my future is terrible; I am terrible. I’m a burden on my family members and loved ones. I’m worthless.” So just imagine how that might influence your decision about whether you want to be here or not. It is very different than saying, “Do you want to take a pill or not, or do you want to engage in an exercise program or not?”
The Chair: Senator Petitclerc, we will come back to you on the second round.
[Translation]
Senator Carignan: My question is for both of our witnesses and relates to the definition of mental illness.
The bill defines mental illness, and, Dr. Kim, I’ve heard you talk about psychiatric disorders and psychiatric illnesses. Some also talk about mental disorders. Is the definition of mental illness clear enough for you? We also heard Dr. Gupta say that the definition is not clear enough.
The situation you have told us about deals mostly with psychiatric disorders, Dr. Kim, which seems to me to be a more precise term than “mental illness” in general. Could you tell us more about this?
[English]
Dr. Kim: This speaks to Dr. Gupta’s point, I think. As I understand it, there are co-morbidities among patients who have serious somatic medical illnesses as well as psychiatric illnesses, and how do you know, if they ask for MAID, what the basis is and so forth, for example. I think that would be kind of a very practical implication of what you’re asking.
For my own experience, I was able to do the research that I spoke to you about from the Netherlands, where they permit what I call psychiatric MAID. The doctors and the review committees have separated out those cases to consider them. As far as I know, there are no prominent disputes about their ability to do that, and because they’re able to do that, we were able to do the study.
From my experience in a jurisdiction, studying the practice, every category has boundaries and grey-area cases, and that should be acknowledged, but my experience is that this is not a prominent difficulty.
[Translation]
Senator Carignan: I’d like to clarify something before Dr. Gaind continues.
I’m not talking about comorbid mental and physical conditions. I’m referring to a situation where a person is living with a mental illness only. The concept of mental illness covers a lot of things and according to Dr. Gupta, it is not precise enough.
Please continue.
[English]
Dr. Gaind: So I think that one of the challenges that arose — and maybe what Dr. Gupta was referring to — was whether we would consider things like dementia as a mental illness for the purpose of this exclusion? That’s really in terms of the practicalities of the question and the answer — probably the most significant thing.
Aside from a few areas like that, I would say there is quite a good definition of what we would be considering as mental illnesses. You’re speaking of mood disorders, anxiety disorders, psychotic disorders, personality disorders — all sorts of disorders. In North America, we use the DSM. The rest of the world uses ICD, and there is significant overlap between those diagnostic criteria for mental illnesses.
Interestingly, the ones that are probably most relevant to your question — again, the neurocognitive or neurodegenerative disorders, such as dementias, for example — those also exist in neurology diagnostic classifications. It’s been an interesting “ball” with regard to which court it’s in; is it psychiatry or neurology?
The difference with those is that you do tend to have a much better ability to predict the irremediability or a course. Alzheimer’s is not going to reverse itself and simply disappear.
So I would suggest that, yes, we can quibble about whether there are little things on the boundaries, but at the end of the day, the practical ones are quite well defined. And keep in mind that when we look at MAID in jurisdictions that allow it for mental illnesses, the majority of people get it for exactly what you would expect they probably would, which are mood disorders and depression. Then there is a smattering of others as well, some of which are concerning diagnoses for people to receive MAID for, like personality disorders.
Senator Batters: Dr. Kim, your presentation mentioned a study showing that 70% of those accessing psychiatric MAID are women. This is the same ratio of women attempting suicide, which is about two to three times higher than men. The statistics also tell us that women are far more likely than men to attempt suicide, whereas men are more likely to die by suicide. That’s generally because men choose more lethal means.
However, with access to MAID, we will be giving women more lethal means to suicide, where there is no second chance to finally get good psychiatric treatment, and hopefully improve their condition. Could you please elaborate on that point?
Dr. Kim: Thank you, senator. I think you have summarized it quite well. In fact, we have a paper under review right now on this very question. We have reviewed the suicide literature, as well as the MAID literature, to try to understand this.
One of the most robust and consistent findings in this literature is that 70% to 80% of psychiatric MAID cases are women. If you look through the lens of people who are at significant risk of suicidal thoughts and attempts, women far outnumber men. When we look at the personal histories of many of these patients, the kinds of things that lead to a life with difficult-to-treat mental disorders, personality disorders and so forth, we often find more women. Men and women both get PTSD, but it’s the young women, as they age, with sexual abuse and trauma histories, for example, which are prominent.
We know that mood disorders are more common in women, and that adds to the issue. But we don’t know why it’s more common in women than men. This is of interest to the WHO: Why are there disparities in terms of women having these mental disorders, which seem to have preceding social conditions that make them more vulnerable?
When you put that all together, it is a worrying picture. We’re talking about populations —
Senator Batters: I’d like to go on to my second question, if I could.
We’ve heard this week that some people have moved past the discussion of whether to include mental illness as a sole underlying condition for MAID, and are no longer discussing whether, but when. Based on the testimony we’ve heard this week, this seems shockingly premature.
Do you think, Dr. Kim, there is any level of consensus in the psychiatric community that would justify a sunset clause, as some have proposed, which would put an end to the exclusion of mental illness on a specified date within Bill C-7?
Dr. Kim: I can’t think of any professional consensus or scientific basis in which you could. I don’t know what the future holds; I’m not sure. Given the best available direct data on the cases that you just heard from me, I don’t know. Quite frankly, I had not heard about this sunset clause idea until recently, and I have no idea how one would justify that on any kind of scientific or professional consensus basis, or indeed on a human rights basis, as I noted.
Senator Batters: Thank you.
Senator Dalphond: My question is for both, but I’ll start with Dr. Kim.
In your presentation, you referred to New Zealand and Australia. That’s not my question, but I just want to comment that they have no charter of rights in Australia, and the New Zealand bill of rights does not give authority to the courts to strike a law. So it may be a slightly different legal context than Canada. That being said, facts are facts and evidence remains the same.
On page 14 of your presentation, the last paragraph of your conclusion is very interesting. You say that if we open MAID to psychiatric or mental illness, MAID will be provided to some people who are not competent, who do not suffer from irremediable conditions or people who have changed their minds.
These three caveats that you’re giving, aren’t they a sign that the psychiatrists or the medical profession is unable to properly assess competency, the irremediable character of mental illness and the ability of patients to consider other options?
Dr. Kim: I think your question is why aren’t doctors competent to do those three things so that —
Senator Dalphond: I’m not saying they are not competent, but you seem to question their competency to apply the criteria.
Dr. Kim: Yes. I would make a distinction. I’m saying that even when they try their best, they fail. That’s what I’m saying the data shows.
Why is that the case? Competency evaluation is an art, number one. You have to use broad criteria and people have different views about it.
There is a recent paper from Belgium that says that when they interviewed neurologists and psychiatrists about their training and competency evaluation, they said, “We never really got formal training.” They all had different views about how to do it. The paper concluded by saying that to get rid of this arbitrariness, we’ll have to do X, Y, Z. That is the state of the art.
In terms of the irremediability, of course, we talked about the science. It isn’t there.
Senator Dalphond: May I ask the same question of Dr. Gaind, former president of the Canadian Psychiatric Association?
Dr. Gaind: I think the most relevant part of that as far as MAID assessments go is that there are no criteria for identifying irremediability. The fact that we cannot predict it, that doesn’t reflect that people aren’t applying some kinds of standards properly. There are no standards. On top of that, we don’t know whether there can be, because of the inherent unpredictability of mental illnesses being potentially different than physical illnesses. This is part of the problem, and it loops back to the previous senator’s question about whether there should be a sunset clause.
A sunset clause would be presupposing the outcome of our determination as to whether irremediability can be predicted, and we don’t know that yet. I sat on the CCA expert panel, as well as Dr. Kim, and it’s not as though we didn’t look at this. We did look at this, and we could not find — not even a consensus — any evidence of being able to predict irremediability.
CAMH — which is probably amongst the most respected, if not the most respected, non-partisan organization — has weighed in on this matter. They have specifically said that at any point in time it may appear that an individual is not responding to any interventions, that their illness is currently irremediable, but it is not possible to determine with any certainty the course of this individual’s illness. There is simply not enough evidence available in the mental health field at this time for clinicians to ascertain whether a particular individual has an irremediable mental illness.
I won’t take more time in answering the question here, but I will direct you to the material I forwarded in my brief. I would specifically ask you to look at the case report presented by Dr. Dembo, one of the earlier witnesses, who is a strong advocate for expanding MAID. Please read the case report of the patient who Dr. Dembo had essentially thought could not get better, even after an extensive literature search. The person did resolve and was then glad to be alive. Dr. Dembo concludes her piece by saying that, in the end, they were wrong in their assessment of her not being able to get better, but they could not have known at the time. That is the state of science.
Senator Plett: My first question is for Dr. Gaind as well, and I do have a question for Dr. Kim if I have the time.
Dr. Gaind, in addition to being a psychiatrist, and you have spoken about this briefly, but I would like a bit of a better explanation. In addition to being a psychiatrist with clinical expertise working with cancer patients and end-of-life issues, you are also a recent past-president of the Canadian Psychiatric Association. You are not a conscientious objector, and you were heavily involved in the initial work the CPA did when assisted suicide policies were unfolding. Yet you are, I think rightfully, critical of the CPA’s current position. Can you elaborate why, and what change took place?
Dr. Gaind: Thank you, senator, for the question. I will preface this by acknowledging that this is a difficult issue for me to talk about. I have spent many hours working with colleagues across the country in the CPA and other groups. We’ve always followed processes that seek to engage both our membership and external stakeholders. That did not happen with the development of the CPA’s current position, and frankly it shocked me.
You heard testimony, on Monday I believe, from the CPA itself stating that they have been engaging members. I believe this was in response to a question about how representative their current position is, and the response was that they’ve been engaging members and stakeholders since 2016 with surveys and symposiums, et cetera. I know this well. It’s true, between 2016 and 2018, when I chaired the time-limited CPA task force on MAID that did this work, we did engage members in surveys and participated in symposiums, et cetera. However, after that was sunsetted in 2018, there was no engagement. Then two years later, without any engagement, the CPA released its current position.
You heard on Monday that they’ve surveyed members again and that they’ve conducted town halls, and that is true. However, there were no questions about or ability to give feedback on the CPA’s position. That was strikingly absent from the survey questions, and the town halls only sought feedback on those same survey questions. More concerning, the CPA actually rejected several members’ requests to have MAID on the agenda at the recent AGM. To this day, the CPA has not asked its members about what they think about the CPA’s position.
In addition, it has not engaged any stakeholder or expert outreach. There has been no input from those with lived experience, nor were Aboriginal or other cultural consultations sought in developing this position statement. If there is one thing we’re learning with the events unfolding around us, engagement and inclusion need to be more than just buzzwords. They must be reflected in actions.
At the recent AGM, it was pointed out that while there has been a good diversity of elected members — up to the board and president, who are all elected by membership — we have not seen that diversity in senior appointments. The CPA is a national association with offices in Ottawa, yet in its over 60-year history, it has never had a visible minority as CEO or chair.
In terms of engagement and getting diverse views to have input into the CPA’s position statement on MAID, I regretfully tell you that has not happened, and it deeply saddens me.
Senator Plett: Thank you. Very quickly, Dr. Kim, do you think an assessment for capacity for decision-making and informed consent is sufficient as a safeguard in the context of assisted suicide, and why or why not?
Dr. Kim: It’s hard to answer in a brief period. As a clinician who wants to be very sure this is the truly authentic wish of the patient, considering all of the relevant factors, I think it’s necessary but insufficient.
Senator Plett: Thank you.
Senator Boyer: My question is for Dr. Kim. In Canada, Indigenous people have experienced racism and discrimination when accessing health care services. As you may be aware, there are instances when an Indigenous person has been targeted and forced to have procedures against their will, such as forced sterilization. If an Indigenous person goes through the MAID process, they are likely to interact with non-Indigenous health care providers, who may or may not be trained to provide culturally safe health care. We heard yesterday that additional safeguards must be in place to ensure Indigenous patients do not feel any pressure or coercion from practitioners.
Given your experience in ethics and decision-making capacity, what safeguards are necessary to protect the autonomy of patients in the decision-making process as it relates to MAID?
Dr. Kim: This is such an important question you’re asking, senator. The only true safeguard would be to ensure equal, excellent access to health care in a culturally sensitive setting that’s no different from any person who lives in the most privileged area of Canada.
If you could guarantee that, then I would say you’ve taken a crucial, necessary step, but if that is not a reality, I don’t know how reliably an isolated decision-making capacity assessment can truly address what is a huge systemic issue.
Senator Boyer: Thank you, Dr. Kim.
[Translation]
Senator Dupuis: My first question is for Dr. Kim and my second will be for Dr. Gaind.
Dr. Kim, you gave us statistics about the Netherlands. I don’t know to what extent these statistics and research take a gender-based analysis into account. When we look at your statistics, we can see that there are significantly more women in them. Is that because women go to doctors more than men anyway?
It’s good to remember that not so long ago, many women were institutionalized at the sole request of their husbands. Contextual studies need to be conducted to justify the data we have today. In fact, I’m not sure I saw that in your documents. My question is this: Are you familiar with the experience in Quebec over the last ten years? In addition, are you aware of the recent report of the Association des médecins psychiatres du Québec on mental illness?
[English]
Dr. Kim: I’m not aware, senator, and if you would like me to comment on it and send it to me separately, I’d be happy to read it and give you my understanding.
[Translation]
Senator Dupuis: Dr. Kim, I want to say that we share with you the feeling that these are very difficult and delicate discussions, especially since I have been involved in this kind of discussion for about ten years, and in a very sustained way. It is a fact that all those who navigate around these issues are faced with this difficulty.
Dr. Gaind, what you said is very important, regarding the fact that there are no criteria for judging the irremediable nature of the disease and that in the case of mental illness, we cannot predict its evolution. My question is this. I don’t know to what extent you are aware of the Quebec experience, but do you accept the fact that there has been a significant evolution in the patient-physician relationship, that the balance of power is more egalitarian now, and that faced with a range of solutions, the conclusion has been reached that the physician must respect the patient’s decision? Do you share this view?
[English]
Dr. Gaind: Thank you, senator. I unequivocally share that point of view. There has been a necessary rebalancing of the contextual relationship between patients and physicians, or any health care providers. That has to do with respect, autonomy, equalizing, and as best as possible, improving of that balance.
Having said that,, no one can know the unknowable. As I said earlier, I am not a conscientious objector. I chair our MAID team in the hospital, but I don’t feel competent at making irremediability assessments for illnesses that are outside of my wheelhouse. So I don’t make that assessment of irremediability because they’re not mental illnesses that are being categorized as irremediable or not. I can’t make an assessment of whether a mental illness is irremediable.
[Translation]
Senator Dupuis: I appreciate your candour, Dr. Gaind. That’s exactly why I put the question to you. Since you are unable to do that, on a personal level, and the medical profession is also, do you not understand why I insist that you leave me the choice, in the end, if my suffering is intolerable? Because I am faced with a medical void, precisely.
[English]
Dr. Gaind: I think I do, madam senator, and I would suggest that if we are saying that the foot in the door in our MAID framework is an irremediable medical illness, and if we can’t demonstrate that it is predictably an irremediable medical illness, we can’t go through that door. I personally am not saying I’m in favour of it, but if society were to say, “Look, we are changing that. It is not about irremediability, but it is about our thinking you have suffered enough, even if you might get better,” that’s a different equation. That’s a different social contract. That’s not the discussion we’ve had with the country, and if that is the decision and the will of the people to go in that direction, we should have that debate. We should not try to pretend that it is about something it is not. That’s my concern.
[Translation]
Senator Dupuis: Thank you, Dr. Gaind.
[English]
Senator Keating: My question is for Dr. Gaind. Thank you very much for your presentation. I thought it was very helpful.
Doctor, the bill itself states the following about a mental illness, and it is not defined but it is excluded, of course. It says that “a mental illness is not considered to be an illness, disease or disability.” Now, that’s a very, very broad brush of exclusion. And you’ve heard Dr. Kim say that, in his opinion, the difference between a patient with a physical ailment and a mental ailment is that the one with the physical ailment wants to live and the rest want to die. I want your thoughts on that, please, from your experience.
Dr. Gaind: I will start with the first part. Thank you for the question, and I am glad that you raised that about some of the context and framing in the bill. I don’t agree with that language. When language is put in a public policy document that says that mental illness is not considered a grievous illness, that sends the wrong message. I do not believe this was intentional, I’m not suggesting it that way, but it does send a message that reinforces a stigma that delegitimizes the validity of mental illnesses.
So in terms of that piece of it — and this is in one of the points in the brief that I’ve sent you — my suggestion was that the current exclusion of mental illnesses from consideration as sole criterion in applications for MAID should remain for the reasons that I’ve spoken to previously. However, the wording should make it clear that this exclusion is based on inability to fulfill a key requirement, specifically of there being no evidence or standards for predicting irremediability in mental illnesses. The wording should explicitly acknowledge that mental illnesses can be grievous disorders.
In terms of the distinction between physical and mental illnesses, it is not about the diagnostic issues; it is largely about what we understand of the underlying etiology of them, the biology of them and the course of them. But the question is: What leads people to seek death from a physical ailment versus a mental disorder?
There is a concept in palliative medicine that was brought about quite a long time ago by Dame Cicely Saunders where they talk about the concept of “total pain.” By total pain, they don’t mean just physical pain; they mean all of these things, including existential pain and angst people might have.
We have a similar situation when people are thinking of applying for MAID. It is not about an isolated silo of one type of suffering versus another that leads to these requests. A fair way to say it would be “total life suffering.”
What I believe — and this aligns with what Dr. Kim was saying, and there is work that supports this — is that when people are suffering heavily from physical illnesses, they have a lot of suffering, but as you expand to mental illnesses, they continue to suffer from symptoms of illness, but the degree of suffering from psychosocial issues is actually even greater. There are people who literally, when they spoke with the Mental Health Commission of Canada during the first round of consultations, I believe it was said, “The stigma I faced is worse than the illness I faced.” And that tells you something about where the suffering is coming from.
When you combine all of that, you have to ask the following: “What would people be applying for death for? Is it illness suffering or total life suffering?” To some degree, that gets back to making sure we don’t set up a system where we are essentially fooling ourselves that we set it up for people to be relieved of irremediable medical-condition illness suffering, when it’s really addressing other life factors that maybe we should be dealing with differently.
Senator Frum: Just to follow up on that last answer, which was a very sensitive answer, having listened now to this whole session, is it correct that the argument is not that mental illness is not a grievous illness, it is not that there are not irremediable mental illnesses and it is also not that every mental illness can be treated; there are mental illnesses that are untreatable and irremediable and grievous. I understand the two witnesses to have argued today that, because of the inability of doctors to diagnose the difference between which is which, that is why we don’t want to venture into this.
But I think you are not saying that there are not irremediable mental illnesses that are beyond treatment. In those cases, what are we saying to those individuals who fall into that category?
The Chair: Who are you asking, Senator Frum?
Senator Frum: Both witnesses, if we have time, because I think that’s the argument they have both made.
It is a substantial, reasonable argument, but I want to understand this: For those people who fall into those categories of irremediable, grievous or untreatable mental illness, what do we say to those people?
Dr. Kim: Thank you, senator. That’s a very important question that we have to address.
We need to be able to mentally imagine addressing people who are affected by this. Your point really gets at that. For those people — we don’t know if they will never get better, so I think what you mean is people who have chronic illnesses who appear to have very difficult-to-treat illnesses. We are working very hard, and we wouldn’t say untreatable, because there is always the therapeutic relationship that can help people cope and shore up their coping capacity.
But let me just add the following: The larger part of my answer is not simply speaking to that person but also perhaps telling that person to think about all these other patients who would have gotten better, whose lives were cut short, from whom we will never hear, and with and for whom we will never have this conversation.
That can’t be separated from the very important question you are asking, because you are in a very tough situation because you have to consider both of those things and not just one. It is a luxury for scholars to just give you our opinions, but the tough decision really is around the fact that we have to look at everybody to whom we have to be accountable.
Dr. Gaind: I will actually follow from Dr. Kim’s answer, because part of the reason the focus of today’s discussion has been so heavily on the issue of irremediability is because that’s the criterion that’s set out in MAID. We haven’t been speaking about these other very important issues. You’re right.
That doesn’t mean there are not things we can do.
So I will answer you in two ways. The first is to, again, play off this idea of the balance we need. Remember you had Mark Henick testify earlier this week. He is a prime example of somebody who was in a situation of dire suffering. It is very poignant; I don’t think he relayed this testimony at the Senate, but he has publicly done so previously, where he got to a point years ago where he was literally on a bridge, ready to jump, and in the crowd there was one person who actually said “jump.” There was another person who pulled and held him back.
He didn’t get better instantly — he didn’t say that — but that was an eye-opening moment for him. And he decided “I want to be the person who holds someone back, not the person who pushes someone. I want to be the same thing myself.”
I used to end some of the sessions I would teach with a bit of a precarious balance, implying that if we get it right, we will get the perfect tricky balance. I don’t end with that anymore. I now have this tricky balance always skewed a little bit, because at the end of the day, I believe it’s not about something where we will ever get the balance right. We have to ask ourselves is: Which mistakes do we want to make? And that is part and parcel of this.
For the person who does continue to suffer, we do not abandon them; we don’t abandon being with them, and we don’t abandon trying to care for them. You would not believe how much difference that can make. A lot of the studies that talk about whether people get better or not are so focused on symptoms; they don’t talk about the other existential issues that also lead to changes in people’s lives.
The last thing I will do is to read a quote. This is from the same paper that I referred to you years ago, which is by Dr. Justine Dembo. She describes such a patient whom she was certain, after multiple suicide attempts, would never get better. It might not have been available then, but I have little doubt that the patient would likely have been interested in MAID. At the end, she writes:
Both hopelessness and hope can be self-fulfilling prophecies, the former resulting in stagnation, apathy and suicide, and the latter leading to purposeful efforts and recovery-focused activity.
The Chair: Thank you, Dr. Gainds. We will introduce a new panellist. If Dr. Kim and Dr. Gaind can stay on, please do.
To Dr. Derryck Smith, I feel bad that we cannot hear from you today, because I can tell you that many senators wanted to hear from you, including me. We respectfully ask you to submit your remarks in writing, and I can assure you that we will read them carefully. Thank you very much for making time to be here. I’m sorry we can’t hear you today.
We now go on to Nicolas Rouleau, a constitutional lawyer.
[Translation]
Nicolas M. Rouleau, Constitutional Lawyer, as an individual: Thank you, honourable senators, for inviting me to testify before you today. Thank you as well for your hard work during this pandemic.
[English]
I speak today as a lawyer who practises constitutional law and who represented Inclusion Canada and the Council of Canadians with Disabilities in the Truchon matter. I am asking this committee to request the amendment of Bill C-7 so as to delete the provision that permits MAID for persons with disabilities who are not at the end of their life.
I will make three points. The first on discrimination. Extending state-provided MAID to persons with disabilities who are not at the end of their life is discriminatory. MAID for the those at the end of their lives is similar to other medical end-of-life options. It safeguards the principle of equality by ensuring that all dying Canadians have an option for a peaceful and painless death. This was the problem identified in the Carter decision.
Beyond the end-of-life context, the government is otherwise not intentionally involved in the deaths of its citizens. This too is equality-affirming. The government signals that the lives of all individuals are essential, that they have equal value and an equal ability to enrich the Canadian fabric. Through Bill C-7, however, the government will enable the deaths of people with disabilities in circumstances where their life expectancy is open-ended.
No other Canadian group, no matter the suffering of its individuals, is considered expendable, an offer made by the government because of its personal characteristics. By expanding MAID for Canadians with disabilities but not for other Canadians, the government sends the powerful and discriminatory message that Canadians with disabilities, and only these Canadians, are non-essential. Singling out people with disabilities fosters stereotypes that their lives have less value than the lives of others, that they have an unacceptable quality of life without hope for improvement, and that whereas the state recognizes that all other individuals are better off alive, these individuals might just be better off dead.
Second, on social consensus behind Bill C-7, there is increasing consensus that the state’s participation in MAID is acceptable where that person is in fact dying, but the participation of the state in the termination of an open-ended life has no such consensus. In fact, those who are the most vulnerable to such a change, specifically persons with disabilities, are the most strongly opposed to this change. It is for this reason that disability rights organizations are essentially unanimous in their opposition to Bill C-7. In essence, the bill is the product of a majority that is legislating contrary to the rights of a Charter-protected minority.
Yes, some individuals with disabilities suffer. Some would request access to MAID if offered the opportunity. But so would many other individuals and marginalized groups, and that doesn’t mean that we should target these groups for MAID.
[Translation]
Thirdly, I would like to talk about autonomy. Autonomy, for people with disabilities, means having access to the services and care that allow them to live a full life. Overall, empirical evidence confirms that, with appropriate supports, the lives of people with disabilities are as rich and happy as those of other citizens, and of other minorities. The role of the state is therefore not to target a particular group in terms of access to early death. Its role is to provide the social and institutional supports necessary for these people to live their lives to the fullest, which in itself contributes to our society.
In conclusion, people with disabilities are afraid. They feel neglected and abandoned; first, because they do not receive the support they need to be independent, and now, because this lack of support has resulted in a bill moving at a very high speed that would echo the darkest thoughts they might have. This bill specifically targets them in terms of assisted dying. We all want to show compassion for those who suffer, we all want to show humanity; but this bill responds to a major problem, the lack of support and autonomy for people living with disabilities, by devaluing their lives and involving the state in their death.
Thank you.
[English]
The Chair: Thank you very much, Mr. Rouleau.
Jason LeBlanc, Caregiver and Researcher, as an individual: Thank you for having me. I am writing today as a caregiver to someone who has applied for and been denied a medically assisted death. The proposed Bill C-7 would expand the existing medical assistance in dying legislation to accommodate individuals such as my common-law partner, who is currently disqualified due to not having a reasonably foreseeable death.
As I have listened to the ongoing debate, my heart has broken for the voices of those who are not being heard: families of Canadians who have used medical assistance in dying; individual Canadians who have taken their own lives after being denied a medically assisted death; those who have been waiting to access MAID, in some cases waiting years; as well as those who may one day be interested in applying for MAID.
In hearing the debate around C-7, I have heard terms such as euthanasia and assisted suicide attributed to the existing legislation, which is language that is inaccurate and misleading. To use these terms is at best a misunderstanding of what medically assistance in death is at a fundamental level. This is about a personal health decision, one that is not made by your doctor, your caregiver, your family or your government. The concept of assisted death is about Canadians being able to grant themselves an end to suffering that they deem to be intolerable. My recommendation is to allow Canadians to make this personal health decision independent of others.
We’ve heard multiple perspectives from individuals who theoretically could be impacted by the passage of Bill C-7 in its current form. There seems to be a sense of fear and warning from some that argue that passing such a bill will actively encourage the oppression of disabled Canadians and other perceived vulnerable populations, and/or compel physicians to recommend it as an option. Under the parameters of Bill C-7, there is no evidence to suggest there will be a compelling of any Canadian to opt in to have a medically assisted death. What Bill C-7 does provide, and singularly so, is a way for more Canadians caught in intolerable and irremediable suffering to have access to a medically assisted death.
Disabled Canadians went to the courts to fight for their right to access a medically assisted death. They have done so multiple times, and if they are not able to access a medically assisted death through Bill C-7, I am confident they will again. With respect to my common-law partner who is disabled, I recommend the same as what Canadians have asked for in these court cases, and that is to allow her choice.
We have seen what has happened to Canadians who have been excluded from medical assistance in dying legislation the past. These are not theoretical conclusions or interpretations of data. With the prior Bill C-14 and the restrictions that were initially enacted as safeguards, some were forced to take their own lives after being denied a medically assisted death. Cecilia Bernadette Chmurra of Saskatchewan suffered from chronic pain and had her application denied, and later died of an overdose in the arms of her husband. Adam Ross of Vancouver passed away alone on a park bench away from any of his family or friends after being denied a medically assisted death when an upper cervical injury that caused him extreme chronic pain was said to have not met the criteria. Jacques Campeau from Quebec had multiple sclerosis and was denied three times for MAID and took his own life, robbing him and his daughters of a final moment of dignity before his passing. Adam Maier-Clayton from Ontario was diagnosed with a severe mental illness, was refused a medically assisted death, and after months spent advocating for equal access, he passed away alone in a hotel room, purposefully excluding his family from the process out of fear they could be charged. We also know of Canadians who have not qualified, who have voluntarily stopped eating and drinking in order to arrive at a point where their death is reasonably foreseeable.
These are a few of the Canadians we know of. It is reasonable to think that there are others whose names we don’t know. I know this may be impolite to acknowledge, but we must face this impoliteness and the failures of Bill C-14 to provide a context for what must be done with Bill C-7, and any justification of exclusion.
Bill C-14 created trauma for those families. Bill C-7 has the potential to do the same, particularly with the exclusion of certain groups or to outright refuse access to certain demographics based on their perceived vulnerability. If you do not make MAID a personal choice for all Canadians with the ability to consent to the procedure, one might assume more stories like these will follow.
There is a narrative that if we deny someone a medically assisted death, we have saved a life. This isn’t true, and the stories of those just mentioned show this.
Then there is my common-law partner. I am her caretaker, as I mentioned in my introduction. She lives 24 hours a day in incurable and intolerable pain. Justine has been tried on more than 25 medications, has been evaluated by six independent pain management specialists, has undergone extensive testing and has been tried on dozens of pain management therapies.
Under Bill C-14, she is forced to live endless years in severe, significant, chronic pain or pursue her own means to an end.
Under Bill C-7, she would likely qualify under the proposed 90-day waiting period, at which time she could have a medically assisted death. This is her choice — a choice supported by the courts and the Charter. If you want to protect vulnerable Canadians, please do so with Bill C-7, for the sake of my partner, the Canadians who have been denied their choice, those we have lost, and those who are waiting for access or who may want access in the future. These are the families and individuals I urge you to consider when looking at what the parameters of Bill C-7 should be.
The Chair: Thank you, Mr. LeBlanc. We will now go on to senators who have questions, and I’ll start with Senator Petitclerc. Senators, please ask questions of the new panellists.
[Translation]
Senator Petitclerc: I want to thank our witnesses for being here.
[English]
Thank you so much, Mr. LeBlanc, for your testimony. We need to hear all the witnesses and every perspective, and for sure we need to hear yours as well. Thank you for sharing it with us.
[Translation]
I have a question for Mr. Rouleau. I’ve heard you speak in the past. Today, you talked about autonomy and you explained this term very clearly. In fact, this question comes up often in this debate. Today, you said: “When it comes to autonomy for people with disabilities, autonomy means access to care and services.” I think we all agree that when it comes to care and access to services for people with disabilities, there is still a lot of work to be done. I would like to hear your opinion on cases such as those of Nicole Gladu, among others. There have been others and there will be others still. Here is a person who, thanks to her financial means and her education, has access to all the care, all the services she wants to obtain. Despite everything, she continues to endure intolerable suffering. She would like to be able to make this choice and have access to medical help to die independently. How do we respond, and how will we continue to respond to this person? This is not a question I am simply repeating, but it is what we heard in the Truchon and Gladu case: why punish them? What do you say to these people, aside from all the others, of course?
Mr. Rouleau: That’s a good question, senator. You zeroed in on the crux of the medical assistance in dying issue, which is so difficult to resolve. That is why I referred to compassion. There has to be compassion on both sides.
First, I don’t think this is a debate about autonomy for all Canadians. That’s what is so hard about it. We are not talking about a general right to die, as is the case in Switzerland, where just about anyone can ask the government to die when they choose. That is not the debate Canadian society is having. Canadians with disabilities are being singled out and told that only they have this right. We are accepting the stereotype that their lives may be worse than those of other people. That is what worries me. If the focus is on autonomy, where people with disabilities have the option to live their lives to the fullest, it will foster happiness among people with disabilities and their lives will be just as full as those of the members of any other group. That is borne out by the empirical data. Once we reframe the debate, perhaps it would then be appropriate to consider holding a broader debate on the right to die in Canadian society. I don’t necessarily think we will need to. Perhaps there will be others who view death as the only option that offers them dignity and full autonomy, but that is a long way off. In the meantime, we are accepting a stereotype about people with disabilities by telling them that they are worse off than others. When they have no hope, they may be right to feel that way. It would not be acceptable to extinguish the hope of any group in Canadian society. There is always hope, and that’s what these people will tell you.
Senator Carignan: I would like to thank Mr. LeBlanc for sharing his story. It was extremely poignant. I have often wondered what it would be like if I were paralyzed and bedridden but could move my head and still had all of my mental faculties. What if I had to spend the rest of my life in that condition, without any chance of returning to my former self? What quality of life would I have? According to Mr. Rouleau, it would be wonderful and I would have access to care; according to him, it is a constitutional right. Mr. Rouleau, you seem to be saying that, by extending this right to people with disabilities — and we won’t squabble over the definition of disability, which can be very broad — we are discriminating against them.
You are a constitutional lawyer. Can you talk about positive discrimination and what exactly it means?
Mr. Rouleau: I’m not quite sure I understand your question.
Senator Carignan: You are a constitutional lawyer. Do you not know what positive discrimination means?
Mr. Rouleau: Are you asking how they are being discriminated against?
Senator Carignan: Can you tell me how positive discrimination is defined and what we are supposed to do when confronted with such a situation?
Mr. Rouleau: Subsection 15(2) of the Charter expressly states that it is possible to improve the conditions of minority groups. The notion of discrimination, as prohibited by the Charter, is solely in reference to minority groups who face prejudice and are disadvantaged. Positive discrimination, or affirmative action, refers to an effort to improve the conditions of minority groups, which is extremely important.
Senator Carignan: As you can see, I am highly autonomous and very fit. I have the heart rate of an athlete, fewer than 50 beats per minute. If my life goes downhill and it all becomes too much to bear, I can choose to commit suicide by taking drugs to achieve my ends. However, someone who is completely paralyzed and experiences intolerable suffering is not autonomous and cannot take action on their own. Is that difference clear to you?
Mr. Rouleau: I do not think that is where the problem lies for people with disabilities. They have an especially high suicide rate. They are entirely capable of taking their own lives. There are other ways to go about it, such as voluntarily stopping eating and drinking, known as VSED, which is possible through medical supervision.
That is not what we want. We agree that it’s a tragic and awful situation, not just for people with disabilities, because any suicide is tragic. What I am saying is that, once you open the door and make it easier to commit suicide — and this is a consideration for physicians — you increase the likelihood of it happening among people with disabilities and other minorities. Do not open the door for those people. They don’t need it opened. Unfortunately, they are perfectly capable of committing suicide on their own, and they do. The idea is to prevent it from happening, and to do that, the government needs to promote their autonomy and provide institutional and social supports. I appreciate that it’s difficult to put yourself in the shoes of someone who has a sudden and severe disability. All we can do is trust the people who are in that situation. Some researchers are finding that things are improving. One of a human being’s greatest qualities is the ability to adapt. While it may be hard to imagine, people in terrible situations do manage to live and to have hope.
[English]
Senator Plett: Let me first offer my heartfelt appreciation — I’m not sure what the right word is, Mr. LeBlanc — but certainly I want to wish you and your partner all the very best as you are obviously going through an extremely hard time that most of us cannot even imagine. I want to wish you all the very best during this difficult time.
My question, however, is for Mr. Rouleau. Yesterday, I raised with Minister Qualtrough the case of Roger Foley. The power differential that exists between physicians and patients is exacerbated when the patient is vulnerable. She agreed with me that it is problematic for the physician to raise the option of assisted suicide with a patient who has demonstrated no interest. She also agreed that there should be limits on how many times a physician should be able to offer this option to a vulnerable patient.
Do you believe an amendment mandating the discussion around assisted suicide to be patient-led — as in other jurisdictions — would improve this bill? Or from your perspective is there no acceptable way forward for this bill as long as the end-of-life criteria are no longer present?
Mr. Rouleau: Thank you, senator. It’s a good question. I have two observations.
One is that any change in the right direction is positive in that sense. But the underlying issue, as you alluded to, is that the bill is so inadequate, in my mind, because of its discriminatory impact on persons with disabilities. As soon as you target that group and state that the suffering of all others is not without hope, and your suffering is potentially hopeless, then you’ve engaged in targeted discrimination against that group.
So to try to round the edges a bit more to say, “Well, at least we’ll give you a fighting chance for survival, and we won’t ask the state or the doctors to incentivize you or to perhaps encourage you to take that route because of the medical power they have over you,” is probably a bit of an improvement. However, you’re still going to see countless persons with disabilities who at some point — and it’s not a moment of weakness, and that’s what is so pernicious with this bill — it’s a moment of clarity, of reason, within the life they lead, without appropriate measures for support. They come to a point where they state, “I think my life is hopeless. There is a bill that effectively echoes my darkest fear that perhaps my life as a person with a disability is hopeless, and sure, I’ve got MAID, so I may as well end it here.”
I hope you’re hearing in this committee from some of the witnesses who state that, had they been offered MAID at some point in their lives, they would have taken it. Today they are happy they didn’t take it; life doesn’t seem hopeless. It’s not meant to trivialize or suggest that they were unable to consent at the time when their life really did seem hopeless. As humans, we all ebb and flow. We have moments when we feel hopeful and moments when we feel less hopeful. But if you have a law that echoes the fact that your hopeless moments are in fact correct, and your fear that there is no hope may in fact be correct, because there is a law that says that in the case of persons with disabilities there may not be any hope, and you take advantage of this law, then you’re not around 10 years later to say I’m glad I —
The Chair: Thank you, Mr. Rouleau.
Senator Plett: Thank you.
Senator Batters: Mr. Rouleau, yesterday I asked the disabilities inclusion minister, Minister Qualtrough, about how Bill C-7’s removal of end-of-life criteria will result in Canadian courts striking down this bill as unconstitutional, as it violates the equality rights of people with disabilities.
I stated that according to Krista Carr of Inclusion Canada, the end-of-life criteria are the only current MAID criteria in Bill C-14 that would not be applicable on a daily basis to many disabled people in Canada.
Minister Qualtrough responded to me in kind of a surprising way, I thought, stating that the group of disabled people I referenced — who would be eligible for assisted suicide each day without that end-of-life criteria — is only a subset. Unfortunately, that would be a very large subset.
How do you respond to the minister’s justification for this bill discriminating against so many disabled people in Canada?
Mr. Rouleau: It’s a good question and I wish I could offer you a good answer, but I don’t understand it. That’s part of the issue, right? Typically, we take the approach in our society — again, as I mentioned earlier, if we want to talk about a right to die, something they have in Switzerland, we can discuss that at the societal level. It wouldn’t be straightforward discrimination in that sense. I suspect that you’d get all the marginalized individuals taking advantage of it.
That’s why I think that, as a society, we don’t want to go to a right to die. It’s not going to be the people who are in perfectly good health or frame of mind; it’s going to be the marginalized people, who don’t have support, who don’t have the social net that privileged individuals like myself have.
This law doesn’t stray too far from this right to die, but it specifically targets persons with disabilities for dying, which is, on its face, discrimination. It doesn’t open this up to everybody in an effort to be non-discriminatory and even-handed. It targets the most vulnerable by name. It calls them out and says that because it might be hopeless for you, only you get to access it.
That’s why I don’t understand this position. It seems like a completely illogical position, and I’ve made the case for why it is discriminatory as well. I think the message that we’re sending is very unfortunate.
Senator Batters: Absolutely. Mr. Rouleau, if you could also please elaborate more fully. You have already talked about this somewhat, and I’m certain in your written materials as well, but if you could please elaborate on your Charter analysis regarding the likelihood of Bill C-7 being found to be unconstitutional as discriminatory for disabled people in Canada.
Mr. Rouleau: Well, the likelihood, it’s hard to say. I would have thought that the Truchon decision had a good chance to uphold Bill C-14, which was based on a thorough process by Parliament at the last instance — hundreds of meetings with witnesses and a sound decision-making process involving all Canadians.
I would have thought that bill had a good chance to be upheld. That’s the problem fundamentally underlying the government’s lack of appeal. We had one judge who obviously was of a different mind. One judge in one province in Canada who went the other way. So it’s hard to suggest what the chances are that the law would go down.
I’d say if Bill C-7 is passed, there is an almost certain chance that it’s going to be challenged as being unconstitutional for discrimination, and I think there’s a decent chance that we’re going to get one judge suggesting that it is in fact discriminatory. The issue is, do you then go up to the Court of Appeal and the Supreme Court in an effort to really determine and think through the implications of this bill? I think that at the end of the day, the Supreme Court has a good chance to suggest that it’s discriminatory. I think they would have upheld Bill C-14 if we had gone up to the Supreme Court last time around, with the objective of protecting these vulnerable Canadians.
Senator Batters: Absolutely. I think it would be interesting in this particular case if the federal government got a court decision from the lowest level —
The Chair: Senator Batters, you’re out of time.
Senator Batters: If they would appeal that. Thank you.
[Translation]
Senator Dalphond: Like Senator Plett, I want to wish Mr. LeBlanc all the best and say how grateful we are for his participation today.
My question, however, is for Mr. Rouleau. You said earlier that the suicide rate among persons with disabilities was much higher than the suicide rate for people in society on average. In looking at the statistics released by Quebec’s Commission on End-of-Life Care and those in the latest federal report, I noted that the current legislation provides two options for medical assistance in dying. One involves a physician or nurse practitioner prescribing a drug that the person self-administers, and the other involves a physician or nurse practitioner directly administering a substance that causes death. According to the statistics, very few people choose self-administered medical assistance in dying: one person from time to time in Quebec, two to three people a year in Canada, or six in years on the higher end.
When people who are at the end of their lives opt for a more peaceful method, are they not looking for compassion and assistance? When that option is not available, they are forced to choose suicide, a more violent method with less support. Does the government not have a duty to provide medical assistance in dying to people who have chosen to end their lives? At the beginning of the week, Senator Kutcher told us that Belgium’s suicide rate dropped after it provided access to medically assisted death. Would that not be the case for the group of people you are talking about, people who have to resort to methods that not only offer no compassion, but also verge on violence? Mr. LeBlanc mentioned a few such cases in his opening statement.
Mr. Rouleau: That is a good question. I was not familiar with those statistics regarding self-administered versus clinician-administered medical assistance in dying. That is very interesting information — quite telling, indeed. Suicide is not easy, and I think you hit the nail on the head. It is not easy, it is tragic and it is violent. That is why some people choose not to go that route. People with disabilities, as well as other members of society, sometimes choose not to go that route for those very reasons. Making medical assistance in dying available to people with disabilities would be a step backward because I don’t think Canadian society is considering the general right to die. I think that societal debate will probably happen later on, but that’s not where we are with this bill. It may be something we need to discuss, but I don’t think we want to discuss it because it gives these marginalized people one more way to end their lives. It may be a measure that gives them easier access to this option. In that regard, perhaps it does offer compassion because no one likes to see suffering, but at the end of the day, I think it makes more people feel as though the government now considers their lives to be worth less than the lives of other people. They are not people who would necessarily commit suicide. Some might, but not all of them. It is precisely for those people that we are fighting. They have already been marginalized by the lack of supports, and we don’t want to see them marginalized again because the government is telling them that the solution to the lack of supports may be to end their lives. We want them to have access to supports so that they can lead better lives.
Senator Dupuis: I want to start by asking Mr. LeBlanc something. Mr. LeBlanc, would you tell your spouse that we have tremendous respect for her desire to make a choice that she is currently being denied? Please tell her that is the whole reason for this debate; we are trying to bring greater clarity to the legislation. It was recognized in the case law. We are trying to prevent a step backwards, and we do not agree. I want to point something out given the information I received from Dr. Kim. This isn’t a question, but the statistics he shared regarding the Netherlands are not consistent with Quebec’s experience.
[English]
The Chair: Dr. Kim, we’ll wait until twelve o’clock before you respond. Do you have a question for these witnesses, Senator Dupuis?
[Translation]
Senator Dupuis: No, Madam Chair.
[English]
Senator Boyer: My question is for Mr. LeBlanc. I am concerned about the family caregiver’s access to resources and supports in Indigenous communities as well, and that is where home care is frequently provided by family members. Family caregivers often have difficulty accessing resources, training and support necessary to provide end-of-life care. We have heard from other witnesses that access to better support services including quality palliative and end-of-life care is essential in the context of MAID. Given the importance of accessing culturally appropriate palliative and end-of-life care, are you able to speak to the accessibility of resources and training aimed at helping family caregivers support their loved ones during the MAID process? Are there any particular challenges that you have faced as a caregiver while taking care of your spouse?
Mr. LeBlanc: Thank you for the question. I will say that the types of support services that Justine requires, it didn’t necessitate any sort of training in the sense that I didn’t need to learn how to operate any sort of medical equipment or device, or do any of the work that would entail if she had a different disability.
In terms of access to support services, I found that locally there are some, but in terms of the training and the home support services, I think that improvements certainly could be made. But for the mere fact that Justine doesn’t require a lot of support services outside of what I’m already equipped to provide and handle on my end, I haven’t really sought out those services beyond simply looking them up. So it would be unfair for me to comment, especially on other communities such as Indigenous communities in terms of their access to support services and end-of-life care.
I do think the support has been adequate on my end, and I don’t have any complaints there, but I’m certain that’s not the case for every caregiver.
Senator Boyer: Thank you. We wish you the very best.
Senator Keating: Thank you, Mr. LeBlanc.
Thank you for helping us refocus on who the true rights holders are and who the true MAID recipients are. My question is along the lines of Senator Boyer’s, but perhaps it is a little more focused.
We’ve heard all week that we should not approve MAID until we have better available services: palliative care, support services. On the Indigenous panel yesterday afternoon, there was an Indigenous care doctor who, when asked whether or not she would still agree with the act despite its deficiencies, she said maybe: “I answer maybe because I currently have patients who are suffering enormously and who really need to benefit from MAID.”
My question is: In your general opinion, would in some or many cases, the existence of support services, or better support services, make a difference to the decision and to the situation that, for example, you find yourself in?
Mr. LeBlanc: That’s actually a great question, because I do think there is a narrative that some people would not be applying for or would not be interested in a medically assisted death if their financial situation was better or if they had access to different treatments and therapies.
In terms of my own personal situation, we aren’t rich. I don’t think that I can say 100% that no amount of money or any sort of changes in the environment around us would change Justine’s decision to seek medically assisted death. It was not a decision that she came to lightly. It was something she gave a lot of thought to and that we had many conversations about; me trying to understand her perspective and why she was requesting MAID.
My answer to that would be, I don’t think that, in my situation, any sort of changes like the ones you have described would influence that decision. That said, I do think that, in some communities, there are standards that are not being met. I don’t know if that’s entirely a separate conversation. There are so many interconnected issues with MAID that sometimes it can be difficult to focus on the nature of the legislation. But I do think, in some communities, there are standards not being met.
Senator Keating: Thank you for lending your voice to this. Thank you very much.
Senator Cotter: Thank you to the two doctors who testified earlier and to Mr. LeBlanc and Mr. Rouleau for their thoughtful and heartfelt remarks. It’s reminded me that, even though we are wrestling with medicine and law, we are centrally engaged in the human condition, and sometimes in heartbreaking aspects of the human condition.
This has been quite an emotional session for me. As a result, my question for Mr. Rouleau — I’m almost embarrassed to ask it because it is far more antiseptic than the conversation we’ve been having in human terms. However, I think I am right that those who were intervenors in the Truchon case would not have had the capacity to appeal the case. I invite you to confirm or correct that.
My question really leads to this: In some ways I am asking, does it matter at all what choice Parliament makes with respect to this aspect of Bill C-7? As you’ve indicated, it is highly likely that, if the bill proceeds in its present form on the issue around reasonable foreseeability of death, we could anticipate that people will bring legal proceedings in relation to it, potentially to the Supreme Court. I think it is fair to say that if we do not include that in the bill, as Parliament, there will be litigation along those lines as well.
I wonder if you could provide your considered opinion of the likelihood of that scenario based on your experience of constitutional law and this issue in particular.
Mr. Rouleau: Just to clarify, the scenario you’re talking about is the likelihood of an appeal that eventually ends up in the Supreme Court?
Senator Cotter: Yes, on either side of this equation.
Mr. Rouleau: On your first, short question. You’re correct; the intervenors didn’t have the ability to appeal. Trust me, if we’d had the ability to appeal, we would have done it.
Part of the issue from our perspective in the Truchon decision was that the judge outright rejected the government’s affirmed objective of protecting the equal lives of persons with disabilities and preventing their stereotypes. She labelled it a valeur — the English world escapes me — but failed to apply that. We think we would have had a good chance on appeal, simply stating that if the bill was looked at on its own terms — which was the protection of the rights of persons with disabilities — we would have won.
I think you are correct that either way, whichever direction Parliament goes on this, it will get appealed and likely go to the Supreme Court.
What I suggested, initially, was to keep the bill similar to what it was as Bill C-14 in its focus on preventing discrimination against persons with disabilities. Again, there was wide consultation in the last bill. There was extensive — I mean, this was months, in a limited timespan too, because there was a sunset clause in the legislation — there were tons of discussions, much more than you’ve been able to do in this abridged time period.
Bill C-14 was well put together. I think what you do is you strengthen its objective. You state explicitly that its purpose is to prevent what I’ve termed as the discrimination against persons with disabilities, and then you move for a reference to the Supreme Court to avoid the years and years of litigation on that front.
I think that would be the simplest, cleanest way to deal with it. Otherwise, you are right. You are going to end up with a year or two years or three years of trial decisions, more evidence being brought in, an appeal and potentially another appeal, unless at some point somebody decides to give up on the process. I think it will lead to extensive litigation.
Senator Cotter: Thank you.
The Chair: Senators, we have come to noon, and so to both these witnesses, thank you very much for your contributions. Mr. Rouleau, thank you for bringing another point of view. Mr. LeBlanc, I think I speak for every person on the committee when I say that it takes a very brave person to come and testify like you have. It means a lot to us. Thank you very much for being here today.
Mr. LeBlanc: Thank you.
The Chair: Not only were you here just for this, but you came earlier. It shows your commitment. We will remember you and your wife when we discuss this bill and think about what should happen. You are going to be the person we will think about when we are thinking about this bill. So thank you for being here. Thank you as well, Mr. Rouleau, for being here. Senators, we will take about 15 minutes to continue with the previous panel.
[Translation]
Senator Dupuis: Madam Chair, further to the question I had asked Dr. Kim, I would like to clarify something. The statistics he talked about in relation to the overrepresentation of women in the Netherlands are not consistent with the experience in Quebec. The statistics there show that 53% are men and 47% are women. I won’t take up any more time. The other senators can have the floor to ask their questions.
[English]
Dr. Kim: Thank you, senator, for that question.
That’s why I had an entire slide on this point. Even in the Netherlands, if you separate out the people with psychiatric disorders, the psychiatric MAID cases, it is about 50/50, just as it is in Quebec. As far as I know, all the data up to this point in Quebec do not include — and I don’t know of any separate data — data specifically about psychiatric cases. So that was my point.
The Chair: Thank you, Dr. Kim.
Senator Kutcher: Dr. Kim, you raised the issue of research in your presentation, which is very important. A number of your papers on psychiatrists’ decision-making capacity-assessment competencies in MAID in Belgium and the Netherlands are based on samples of 100 cases and 66 cases, respectively, a small and unrepresentative fraction of the number of persons who have received MAID in those countries.
This research was also based on case report review, a technique that we know can’t be used to assess psychiatrists’ competencies. As a professor emeritus myself and a previous examiner for the college, I can attest that competency assessment for any individual psychiatrists can only be determined by multiple direct observations, not by reviewing case reports.
Your research, to my knowledge, has not used this methodology and has not been conducted with Canadian psychiatrists, although Canadian psychiatrists are, by the Royal College competency criteria, demanded to show substantive competency in decision-making capacity assessment and in complex suicide assessment.
Given that Bill C-7 is a law for Canada and not a law for Belgium or Netherlands, and that how MAID is practised in Canada is different from how it’s practised in Belgium and the Netherlands, would you think it would be unreasonable for critics to cite your work as proof that Canadian psychiatrists do not have competencies needed to conduct decision-making capacity in persons who have a sole mental illness?
Dr. Kim: First, I would like to correct one statement that you made, that my sample was not representative of people who received MAID. I would call your attention to the fact that when I did my first study, from which I derived this data, it consisted of nearly 80% of all cases of psychiatric MAID during those years in which it was performed in the Netherlands. So I think close to 80%, as far as these scientific studies go, would be considered a representative sample of the actual practice.
The numbers are small because the numbers actually available are small, so that is something that we can’t do anything about. And I would just point to the fact that — what you as a scientist would appreciate — the decision-making about these issues has to do with the best available evidence, not seeking evidence that’s impossible to get. As you know, there are many randomized clinical trials that we would love to do that we can’t do for ethical or practical reasons, so it is the same.
The question is: Do we have the best available evidence, given that these are directly cases, of the actual cases by the review committees of the jurisdiction in which these occurred, and the overwhelming majority of the cases?
So I would just point that out.
I did not say that the doctors are not competent. I said that the practices will lead to inevitable errors, and the question really is the error rate. I think the important point here is that when you have 20, 30 or 40% of the people disagreeing about a particular case, I don’t think it is a reasonable position to take, that on every single case, the person who found the person not competent is always wrong, which means that there will obviously be cases in which people were not competent who received MAID, and also in cases where people’s predictions of irremediability would have been wrong.
I would just like to point out that I was very moved by Mr. LeBlanc’s testimony, because he and his wife represent a very compelling voice in this debate about why people feel so strongly about it, because they feel that there is this benefit that some people can get.
My only point in coming here today and actually trying to use the only direct available evidence that is representative of the practice is, unless we make the a priori claim that there is no harm possible from the practice, then we need to have a cold-eyed look at what actually happens and the possibility of harm. The harm would be, for example, people who would receive MAID at age 30, when they could have gone on to live a meaningful life at age 60. The only problem is that in those cases, once the procedure is done, there is no way we can be accountable to them.
What I’m trying to do is bring attention back to a population-based reasoning, taking into account both the benefits — and I think that you’ve been witness to some of the most compelling reasoning behind that today — and the less, perhaps, engaging, because I know I am a little boring as a researcher talking about numbers, but sometimes we have to look at the numbers to talk about the likelihood of harm and so forth.
Senator Kutcher: Thank you for your clarification. I appreciate that very much. I am sure we’ll both agree that assessing a person’s competencies, and even error rates from case reports, is very difficult. I completely agree with you that it is the ratio of risk of harm to benefit that is the major challenge that we are all struggling to sort out.
Senator Pate: Because I see you are still with us, Mr. LeBlanc, I want to say thank you for sharing. Please do give our best to your partner as well. The kinds of decisions that you are having to make are ones that too many of us, and too many of the people that we are working with, struggle with every day. Thank you for your care for Justine.
My question for both doctors. One of the things we’re being asked to grapple with here is a situation where we will be inserting into our health care legislation the right to die, essentially. Many of us are concerned that we actually don’t have the same provisions and the standards that require the provision of social services, health services and economic supports that you have described, creating what I would describe as potentially an unjust, unfair and unequal position.
It has been described as paternalistic to deny people with disabilities the right to die. I find it problematic to describe, as a choice, the option of the right to die, when we haven’t also enshrined the right to live for far too many people.
I’m wondering if you are comfortable commenting on that component. I think you already have in some of your testimony, but if you could elaborate on that I would be very grateful.
Dr. Gaind: Sorry, who are you directing the question to?
Senator Pate: To both of you, if there is time.
Dr. Kim: Senator, I think that’s a very compelling point. As you probably know, there is a strong tradition in political theory where autonomy is a foundational principle, and that is obviously very strong in this right-to-die movement. However, it is just as strong within that tradition to think about what is true autonomy, which is having genuine options in front of you, such that you can truly, freely exercise that autonomy.
I think what you are speaking to is that it can sometimes get lost when we look at just some of the more compelling aspects. But I would echo that and that there is a very strong intellectual tradition with which we can make a very compelling case that autonomy demands better.
Dr. Gaind: I would echo what Dr. Kim said and go a little bit further in that it is an issue of choice. You can’t have autonomy without choices. A system that’s set up to facilitate easy access to death, to provide relief of life suffering — while there are no options or options aren’t available for providing a life that has relief of life suffering — will naturally skew decisions in a certain way.
We find it is very hard to see changes in national suicide rates. It is striking how there are some examples through the past several decades where we’ve seen dramatic changes that seem associated with making it easier or harder to access easy death. The example I will give you is the coal gas deaths in the U.K. Back in the 1960s, probably, homes had domestic supplies of coal gas that had 14% or 15% carbon monoxide. Suicide rates were roughly 30 per 100,000 for men and 20 per 100,000 for women, and over the next 10 years, they dropped dramatically — and you almost never see that kind of change — where it went from 30 or so down to about 20 for men, and for women it similarly went from 20 to about 13 per 100,000. It seems to have been associated with simply not having coal gas with carbon monoxide piped into homes. They switched to natural gas, which is not lethal in the same way.
You see a similar parallel to some of the suicide deaths in some Asian countries. A similar thing happened in Sri Lanka between the mid-1990s and mid-2000s when they banned endosulfan, a common way of killing oneself; it was an easily available pesticide used in suicides.
What does that tell us? It shows that if we make it easier, more people will do it. The other part of the equation is that if we don’t have the support systems in place for people to live without suffering, what will they do? I think it is pretty obvious.
Can I make one small comment on a different issue? I found interesting the dialogue about the ability to make determinations of capacity through just a Charter view. With the chair’s indulgence, could I make a brief comment on that?
The Chair: Yes, go ahead. Quickly.
Dr. Gaind: Again, I’m glad it came up, because it highlights not just the risk but the danger of lack of standards.
The first case of MAID for mental illness in Canada occurred when there was independent judicial review by the Alberta Court of Appeal in the case of E.F., a woman who had conversion disorder. If you recall, in that case, the psychiatrist who opined on it never saw the patient; they didn’t see the patient visually, they didn’t see them directly and they didn’t have a phone conversation with them. Yet not only did they opine on the irremediability of conversion disorder — which is when someone has symptoms we can’t explain through physical finding — they also opined on this person being capable and competent on a Charter review.
So, Senator Kutcher, I agree with you: It is a risky thing, especially if things like that are brought into clinical practice. And E.F. did receive MAID.
Dr. Kim: If I could make a brief point, I thank Dr. Gaind for reminding us of that case, because it reads very similarly to the kind of personal prerogative and discretion that doctors take when they provide evaluations and so forth. That’s something not to be underestimated, which is different from saying they are incompetent.
The Chair: Thank you, Dr. Kim.
I have so many second rounds, but I’m giving one and a half minutes to a few senators.
[Translation]
Senator Carignan: I have an observation. I may be mistaken, but I thought I heard Senator Pate say that the right to life was not enshrined in the Charter. I may have misunderstood, but if not, I urge her to read section 7 of the Canadian Charter of Rights and Freedoms. It is laid out pretty clearly.
My question is for the physicians. Mental illness is a very broad concept. Can someone have a mental illness that is irremediable? Is that possible? By the way, I am completely disregarding physical health or comorbid conditions of a physical nature.
[English]
Dr. Gaind: It is a good question, because it gets to the heart of the idea that we know there are times that people continue suffering through their lives. Consider the unfortunate case when somebody ends up taking their own life, for example, naturally. By definition, they were in a state of suffering, you would imagine, when they took their life, and they had not remediated.
It is not that we don’t believe it can happen; it can. One problem is identifying it, and the other problem is also defining what we mean by irremediability. Very often, irremediability in our biomedical model focuses on symptoms, and yet patients don’t always focus on symptoms. Certainly, if somebody has chronic symptoms that persist — we heard earlier from CMHA about the value of the recovery model, which puts a different framework on it.
I don’t want to take all the time for the question, in case Dr. Kim has something to add.
Senator Dalphond: My question is for Dr. Kim. In his PowerPoint on page 12, he wrote:
Because of fewer psychiatrists in the Netherlands willing to be involved, 91% of PMAID now occur in clinics that ONLY perform MAID (no prior relationship w patients; no palliative care or other treatment offered).
Does that speak for the fact that psychiatrists should try to maintain the link with the patient, especially those that show they would be willing to use MAID?
Dr. Kim: I’m sorry, senator. I didn’t quite understand the last part of your question; could you repeat it? I am sorry.
Senator Dalphond: I am saying your excerpt doesn’t stand for the principle that psychiatrists should be invited to maintain the relationship with their patients as much as possible, even when they show signs they would like to use MAID.
Dr. Kim: Absolutely. As a psychiatrist, I practised for 18 years and have had many, many conversations with people who wanted to die. I acknowledged their desire to die, and we talked about it. I didn’t always hospitalize them when they expressed that, if I thought it was a chronic issue that we had to work together with.
I think it would be horrible if anybody advocated that there should be a severance of the relationship between the treating psychiatrist and people who wish MAID, because our job is to stand next to people who have those feelings.
The reason it occurs in the Netherlands is because either patients find out about doctors who are more willing to do it — so they go to them or the clinics — and you can’t force relationships on people. There are fewer and fewer psychiatrists willing to countenance doing it, for a variety of reasons.
Senator Batters: Dr. Gaind or Dr. Kim — whoever can give me the best quick answer — there was a claim made at least once over the course of our study this week that suicide rates go down in countries that legalize MAID for mental illness. Given your understanding of assisted suicide regimes internationally, in limited jurisdictions of course, do you have any insight as to whether this is true? My understanding is —
Dr. Gaind: I will jump in quickly and read what is in the CCA report that deals directly with this.
I was struck by that comment earlier about suicide rates reportedly going down in Belgium and staying stable in the Netherlands.
The CCA report found that in jurisdictions where psychiatric AS is permitted, OECD data showed that on average, keeping in mind there is something after this, the non-assisted suicide rate decreased in the Benelux countries between 1990 and 2016. More recently, the suicide rate has increased in the Netherlands since 2007, while remaining relatively steady in Belgium.
Senator Batters: Thank you. I appreciate your time.
The Chair: Thank you to all panellists for being here and to the senators for being so patient with me today.
Dr. Gaind: Thank you.
Dr. Kim: Thank you very much, senators.
Dr. Gaind: I appreciated the deep and excellent discussion.
The Chair: Senators, we have four very good witnesses today. To the panellists, I want to say that we are very appreciative of you coming at such short notice. Thank you very much. We will now go on to a video from Ms. Frazee.
Catherine Frazee, Professor Emerita in the School of Disability Studies, Ryerson University, as an individual: I speak today from Mi’gma’gi, the ancestral and unceded territory of the Mi’kmaq people.
I am a settler here bound by treaties of peace and friendship, and mindful that we are, all of us, treaty people.
Madam Chair and honourable senators, it is a privilege to appear before you, a privilege accorded to those of us who are careful with our speech, even though we may wish to scream.
We who testify must acknowledge others who do not share that privilege, or for whom the luxury of demographic discourse falls well below the urgent matters of food, shelter and safe haven from pandemic threat.
“Why us” is far more than a hashtag, more than a rhetorical device, more even than a rallying cry for this time of rising. It is a serious intentional question; our attempt to unveil the pernicious flaw at the heart of Truchon, now reproduced in this bill. “Why us” is a question that deserves a straight answer on the record before Bill C-7 is put to a final vote.
If Canada is to offer death as an option for those who suffer, why advance that offer only to those with disabling conditions? Throughout this week, you have heard testimony about the great pit of social neglect into which more and more disabled Canadians plummet every day. You have heard that the threat of institutional confinement hangs like the sword of Damocles above each of our heads. These are hard facts that must give pause. So yes, let’s pause.
Pause to unlock the stubborn problem of Truchon, a case mired in the deep bogs of stereotypical disability misery. Having embraced the mythologies of suffering as perpetual and unremitting states in the experience of disability, the court, in Truchon, was doomed to fail. And from that failure, we now confront Bill C-7, a convergence of ambition and circumstance that will leave our equality in tatters.
That is the alarm that we are ringing; we who make it our life’s work to observe the interplay between disability and justice, and to engage, sometimes fiercely, when danger presents.
To understand what went wrong in Truchon, and what is, right now, very wrong in Bill C-7, you must first tease out the unbiased truth from a thick soup of disability stereotype in which we are all immersed. That must be a deliberate project, one that the court, in Truchon, failed to undertake.
Disability inequality goes deeper even than material deprivations. Embedded in our stories, my own and others that are before you in our written submissions, are endless assaults to our dignity that tear away at our sense of belonging. Each time we step out into the public square, our presence is unexpected, our bodies are disrespected, and our ways of being are feared and pitied. We know this inequality in our bones, although it remained all but invisible to the drafters of this bill.
Yet still we survive, still we resist. That resilience comes from the certainty that we are valued in law, that we bear rights; the very same rights as those who would diminish us.
Madam Chair and honourable senators, understand this and you will know why we cannot compromise, why we will not meet halfway on Bill C-7. For there are times when that certainty of our place of equality under the law is quite literally all that we have. Please, do not let that be taken from us. Thank you.
The Chair: Thank you very much, Ms. Frazee. We have certainly heard you. Thank you for your presentation. We will now go to Ms. Laverne Jacobs, Associate Professor and Associate Dean, Research and Graduate Studies, Faculty of Law, University of Windsor. Professor Jacobs?
Laverne Jacobs, Associate Professor and Associate Dean, Research and Graduate Studies, Faculty of Law, University of Windsor, as an individual: Thank you senators for the invitation to appear before you today. My name is Laverne Jacobs, I’m a law professor at the University of Windsor. I research and teach in the areas of law and disability, human rights and administrative law. I am the founder and director of the Law, Disability & Social Change Project, which is a research and public advocacy centre at the University of Windsor’s Faculty of Law. I’m also a Black woman and a person with physical disabilities.
The current debate about medical assistance in dying, or MAID, has focused on very specific issues in relation to MAID, namely eligibility, safeguards and advance requests. These are all important topics, but permeating all of these topics is an issue that is of primary importance, and that should be front and centre. This is the issue of stigma.
Stigma surrounding people with disabilities is perpetuated by the proposed revisions to the MAID legislation. There are a number of things that this legislation, and the key government actors, need to do in order to ensure that people with disabilities do not face extended social inequality as a result of MAID.
It’s useful to begin this discussion with an analogy that takes us outside of the very many tangled pieces relating to medical assistance in dying. I want to open this presentation by asking you to think about the racial stigma faced by members of the Black community. Racial stigma forms part of anti-Black racism. In Canada, the U.S. and elsewhere, the Black community is often identified as being a troubled community and problematic, although a thorough investigation would find many of the problems experienced by the group to be connected to historical, socio-economic and legal structures of society. Strong systems of substantive equality would look beyond the actions of individuals to investigate the structure of social relations within which people act.
As a result of social structures that have been built on biased understandings of social existence, inequality becomes not just a set of individual circumstances but also a much larger web of systemic discrimination. What is particularly troubling about any structure of systemic discrimination is that, once ideas that are harmful to a minority group have been legislated into law, it becomes extremely difficult to convince the general public that those ideas are stigma-inducing or ultimately discriminatory.
The situation of racial inequality mirrors the situation that we are living, breathing and discussing now with MAID. In both cases, we are dealing with the stigmatization of a historically disadvantaged group, and in both cases, the stigma itself has caused harm to the group. However, we are in the privileged position to learn from mistakes of the past, and prevent our legislation from continuing to systemically stigmatize people with disabilities.
The question now is how to do that. How do we strip the structure of our MAID legislation of ableist understandings of social existence? I argue that we cannot allow access to MAID without ensuring protection of the disability community from stigma. Moreover, the government should not be allowing MAID if it is not also enabling those with disabilities to have the supports they need to live a fulsome life, when they choose to do so, at all stages of life, including at the end of life.
The topic of medical assistance in dying presents two different visions of equality. The first is a formalistic vision of equality which asks for and likes to be treated alike. This is the type of equality that underlies the Truchon decision of September 2019, the decision that led to these legislative changes in relation to MAID.
The idea fought for and won in the Truchon case is that all people with disabilities should be given the same opportunity to obtain death. However, this is a very narrow and problematic conception of equality. It does not address the substantive implications of saying that it is okay to seek medical assistance to die if one is disabled, and regardless of the stage of life you are in.
It certainly does not inquire about whether the label of being “MAID-able” furthers the historical disadvantage of the disability community as a whole.
Finally, it does nothing to ensure that the social situation of people with disabilities, as a community, is ameliorated overall. In fact, this conception of equality also runs contrary to the principles of the UN Convention on the Rights of Persons with Disabilities. The CRPD committee published its interpretive guidance on the notion of equality under the convention in 2018. Canada ratified the CRPD and it entered into force for Canada in 2010.
Several stories have now come up in the news and elsewhere about individuals feeling pushed into MAID.
The Chair: Ms. Jacob, I’m sorry, your five minutes are over. I’ll give you a second to wind down.
Ms. Jacobs: So, in conclusion, I share the concern of the UN Special Rapporteur, who concluded on her 2019 visit to Canada that the implementation of the legislation on medical assistance in dying is problematic from a disability perspective, and in light of recent events relating to the COVID-19 pandemic and its impact on people with disabilities who live in poverty, I would go beyond this to say that this legislation is beyond problematic, as it may be encouraging death as an alternative to providing the necessities of food.
I think we need to focus on making sure that the legislation is not stigma-inducing. Thank you for allowing me to share my comments today.
The Chair: Thank you very much, Ms. Jacobs, for coming and sharing your comments, which will really help us in our deliberations.
We will now go on to Dr. Jeffrey Kirby, professor in the Bioethics Department, Faculty of Medicine, Dalhousie University.
Dr. Jeffrey Kirby, Professor, Bioethics Department, Faculty of Medicine, Dalhousie University, as an individual: Thank you for this kind opportunity. I wish to use this introductory time to briefly comment on and apply an ethics lens to clause 1(2) of Bill C-7.
In my view, it would be discriminatory and ethically unacceptable to remove the reasonably foreseeable death eligibility criterion for MAID requesters whose suffering arises from physical health conditions, and not to remove it for MAID requesters whose suffering arises from mental health conditions.
Problematically, the Charter statement contends that the exclusion of circumstances where a mental health condition is the sole cause of suffering, is based on the inherent risks and complexity that the availability of MAID would present for individuals who suffer solely from mental illness. The justification of this is based on the Charter statements, the identification of three particular risks and complexities.
Number one, screening for decision-making capacity in persons with a mental health disorder is particularly difficult. Number two, the course of mental illness is generally less predictable than the course of physical illness. Number three, international implementation of assisted dying for persons whose suffering arises from a psychiatric condition has raised concerns.
With regard to number two, high-level evidence does not exist that comprehensively compares the predictability of mental health conditions to the predictability of physically based conditions. As such, the claimed statement number two does not stand up.
The paradigm mental health conditions cited in the literature concerning assisted dying for suffering arising directly from psychiatric disorders, i.e. treatment-refractory depression, typically has a reasonably predictable course from diagnosis to death, once this diagnosis is accurately established by an attending psychiatrist.
Some physical health conditions that constitute qualifying conditions for MAID, for example chronic significant cardiac disease, are well-known for the unpredictability of their course over time.
With regard to numbers one and three, the adoption of the set of five proposed augmented safeguards, including at the end of my brief, could essentially eliminate this prescribed risk. Although the assessment of informed-consent elements can be challenging in persons with mental health conditions — given the possibility of degradation of decision-making capacity with some specific presentations of psychiatric conditions and the possible influence of less than optimal insight by affected persons — Canadian psychiatrists are well trained and positioned to assess capacity and the other core elements of the informed consent process, and they are fully knowledgeable about the available scope of psychiatric treatments and interventions.
Also, the majority of patients who are individuals with psychiatric disorders have decision-making capacity and are capable of autonomous decision-making about important matters related to their health care and treatment.
Proposed safeguard number one, that an independent psychiatrist be one of the MAID assessors, is consistent with the Bill C-7 provision that one of the evaluating practitioners has expertise in the health condition causing suffering, but not with the Charter statement that this does not necessarily have to be a specialist.
And the proposed safeguard two of obtaining the input of the attending longitudinal mental health care provider provides the necessary assessment circumstances to ensure that a person with a mental health condition is making a capable, well-informed decision. The possibility of the independent psychiatrist performing the assessment through a confidential low-tech virtual platform effectively mitigates any potential barrier to access to MAID posted by a contingent lack of psychiatric practitioners to perform MAID assessments in the individual’s local community.
Further, there are significantly more relevant similarities between MAID circumstances for persons whose suffering arises from physical health condition and those circumstances where suffering arises from mental health conditions, including their common co-mingling with psycho-existential distress and their known presence in non-terminal health conditions.
Suffering of all forms is a person-specific experiential phenomenon which typically has significant subjective elements.
As such, the quality and magnitude of the suffering on the basis of a physical health disorder and on the basis of a mental health disorder cannot be effectively compared. Therefore, no lexical ordering of the types of found suffering can be supported. The cited difference between suffering from physical health disorders and suffering from mental health disorders — of the former having more overt, clinical presentations for discernment by a family physician or nurse practitioner — would be negated by the implementation of proposed safeguards one and two, which require assessment by an independent psychiatrist with input from the attending longitudinal mental health care provider.
Finally, from a social justice perspective and, importantly, proposed augmented safeguard three would assist in the mitigation of the harms and burdens experienced by persons with severe and persistent mental illness, based on such possible vulnerabilities as marginalization and powerlessness. It proposes that a MAID requester whose suffering arises solely from a mental health condition be provided with the option of facilitated access to the publicly funded services of an independent MAID advocate navigator, who has a general knowledge of mental health disorders and specific training in diversity inclusion, cultural responsiveness, non-directional advocacy and supported health-related decision-making. Thank you.
The Chair: Thank you, Dr. Kirby.
Dr. Ramona Coelho, Family Physician, as an individual: Good day. My name is Dr. Ramona Coelho, and I’m a family physician who works in the margins. By that I mean, in Montreal I was a home care physician who took care of disabled and ill people who are homebound. Here in London, Ontario, my practice is comprised largely of people living with disabilities or chronic diseases, many refugees, men out of prison.
Given my practice, I am here to say that this bill does not protect my patients from transient suicidal ideation, and it needs amendments.
I would like to point out as a separate point, the limitations of the 2019 Health Canada report on MAID. The information was self-reported by MAID providers, so unlikely to uncover abuses. Canadian evidence can say nothing about MAID outside of the end-of-life context and so will not tell us what will happen when Bill C-7 is enacted. The information is pre-pandemic, and COVID has affected vulnerable communities by furthering financial difficulties, limiting social supports as well as increasing isolation.
Besides which, a new article in the Canadian Journal of Bioethics concludes that oversight of MAID has been inadequate. Munro et al. published a study this month that palliative care access is much lower than was reported in the Health Canada report. Abuses of MAID legislation are outlined in the April 2020 World Medical Journal by Herx et al. and the Vulnerable Persons Standard report. There are documented cases of abuses of law and policy by the Chief Coroner of Ontario, the Commission on end-of-life care in Quebec, and very recently, the Correctional Investigator of Canada.
Back to the reality on the margins, and my patients who can now access MAID within 90 days. Pain clinics, psychiatry, rheumatology, neurology; they all take longer than 90 days to initiate a meeting, educate, decide on therapies and find symptom resolution.
Death wishes are often transient, and they peak at three months and they wane by 24 months in patients with chronic illness. We should not be facilitating suicide through MAID when offering resources would let these people go on to enjoy a good life.
Kristine Cowley is a person who had a spinal cord injury 33 years ago. Since her injury, she has a doctorate, is a professor and wheelchair track Paralympian. She is married and had three children, all post-accident. Let the ableists in the room listen. Kris shared that it took her years after her spinal cord injury to feel great in the morning. She had to live in the community and integrate to feel healed. She shared that if someone had suggested MAID to her in her early years, she may not be here today.
Dr. Karen Ethans, a physiatrist from the University of Manitoba, shared that many doctors who work in acute care settings have no understanding of the lives of people with spinal cord injuries, and many times these doctors have communicated their biases to the patient before she has gotten involved. She also said that early on, many patients are suicidal, but by two years they rate their quality of life as quite high, in fact, many higher than the non-disabled population. She says permitting eligibility for MAID in early periods, when they are vulnerable, is a failure to understand medical evidence.
As I shared, my patients have disabilities and a high prevalence of illness. When you’re faced with loss of function, denied essential supports, living in poverty, things can be overwhelming for all of us. There is a subtle kind of coercion that can take advantage of such a patient’s state, signalling to them that they are better off dead.
Spring Hawes, a lady who has had a spinal cord injury for 15 years has publicly stated:
As disabled people, we are conditioned to view ourselves as burdensome. We’re taught to apologize for our existence and to be grateful for the tolerance of those around us. We’re often shown that our lives are worth less than non-disabled lives. Our lives and our survival depends on our agreeableness.
A choice to die isn’t a free choice when life depends on compliance and good behaviours with societal norms, and sadly, the medical community can be complicit in this messaging. In that story I shared before of spinal cord injuries, what Dr. Karen Ethans was saying is that many doctors have already instilled that idea of hopelessness in those people who had just had motor vehicle or other injuries.
Gabrielle Peters, a brilliant writer who has struggled with poverty since her disability, has shared that a health care professional sat on her bed — her husband had just left her because of her disability and she was newly bed-bound — and urged her to consider death. We heard in the Justice Committee similar stories by Roger Foley and Taylor Hyatt.
I conclude with sharing the words of Dr. Thomas Fung. His Indigenous population struggle with the same negative social determinants that mine do. He stated:
Assisted death should ONLY be an option of last resort, and not the path of least resistance for the vulnerable and disadvantaged. We need MAID to be a patient initiated discussion only and that MAID should remain a last resort.
I ask for these amendments in the bill. Thank you.
The Chair: Thank you very much, Dr. Coelho. We will now go to the questions, and may I please ask senators that they direct whom they want to answer the question, and to all is not an option. I’m not going to decide who you want to ask the question to.
Second, I will have to be extremely strict. We have very little time. It’s almost three minutes for this round. Thank you.
Senator Petitclerc: I want to specifically say thank you to this group of witnesses and Ms. Frazee for really bringing forward the need for supports for persons with disabilities in this country. You have done it in the past, and thank you for doing it now. I know that you will always continue to do that. I appreciate that.
I do have one question for Ms. Jacobs. I hear that you have some concerns about the Truchon and Gladu decisions, but here we are with Bill C-7. Bill C-7 brings in front of us those two tracks of safeguards.
I want to specifically hear your thoughts on those two tracks of safeguards, and what you think about the need for individuals to be informed, to have that conversation in terms of the services that are available. Do you feel it is enough? Do you think it should be more? How would you improve the bill, if you feel it needs to be improved?
Ms. Jacobs: Thank you for asking those questions. I’m going to start by talking about the need for information for individuals. That really wraps up a lot of the questions and concerns that I have and I have seen.
It’s important that supports be made available, that people have fairly lengthy and involved conversations about what it is they need, and that there is an opportunity for this back and forth. I think that in a kind of wrapped-up way, that is how I would address these issues. Thank you.
Senator Petitclerc: Thank you. Do I still have time, chair, or do you prefer to put me at the end?
The Chair: We won’t have a second round. There isn’t enough time. Go ahead, quickly.
Senator Petitclerc: Ms. Frazee, I’ve heard you many times, and you’ve been very clear in your opening statement. We do have this bill in front of us, and I am trying to figure out the balance between autonomy and self-determination. I’m trying to think about the individuals who you’re talking about, but also think about Gladu and Truchon. How do we make this bill better? It’s what we have in front of us.
Ms. Frazee: Thank you, first of all, for asking that question. I fear I won’t have enough time to respond.
The Chair: No, Ms. Frazee, take all the time you need to respond. That’s fine.
Ms. Frazee: I do appreciate that.
Senator Petitclerc, I appreciate and respect your position. I know that you are attempting to help us reach a kind of compromise. I understand you’re in a difficult position with respect to this bill.
I think that we have to appreciate that respect for autonomy. While it is an essential value in our human rights and human relations, it is not always paramount. I believe and I think and we would agree there are circumstances in which, for compelling social reasons, we override the autonomy of others, with suicide intervention being a very important and fundamental example of how and when we might determine that there is a higher value that we must also respect.
It is my position that we need to pause, as I have said, and work this out far more carefully because of the risk to equality of disabled persons that is held in this bill. My understanding from a legal analysis that others have presented, is that we should simply ask for a further extension from the court in Quebec in order to do that. There are such fundamental issues at stake here, most of which I believe you and I would agree on. So let’s take the time that we need. Thank you.
The Chair: Thank you very much, Ms. Frazee.
[Translation]
Senator Carignan: My question is for Dr. Kirby. If I understand your brief and your opening statement correctly, your view is that excluding mental illnesses is discriminatory and overly broad. It is possible to assess the situation or to apply the criteria to persons with mental illness on a case-by-case basis, but it is also possible to incorporate specific safeguards for situations where the person suffers solely from mental illness, without any comorbid conditions of a physical nature. First, do I have that right? Second, what would those safeguards be?
[English]
Dr. Kirby: I’m going to have to ask that that be translated, unfortunately, and I’m wondering whether someone could do that for me.
Mr. Palmer: I would like to remind the witnesses that if you look at your Zoom, on the bottom right there is a button that says “interpretation,” and you can choose whether you want English, French or the floor.
Dr. Kirby: Thank you. Unfortunately, I don’t have the question.
[Translation]
Senator Carignan: I’ll repeat it. If I understand your brief and your opening statement correctly, your view is that completely excluding mental illness is discriminatory, that it is possible to conduct assessments on a case-by-case basis to apply the MAID criteria to mental illness cases and that the criteria can therefore be applied. However, you are recommending additional safeguards solely in the case of mental illness, when there are no comorbid conditions of a physical nature or otherwise. Do I understand your comments and your brief correctly? Also, what are the safeguards you recommend specifically for cases involving mental illness?
[English]
Dr. Kirby: Thank you very much for the question. I mentioned in my presentation a few of those safeguards that I’m recommending. Certainly one would be that independent psychiatrists necessarily be involved as one of the assessors for MAID in circumstances where the primary suffering is on the basis of a psychiatric condition.
The second safeguard is that the person who’s doing the assessment, the independent psychiatrist, would have the input of the attending health care provider, the one who has provided longitudinal care to the patient over time and knows the patient very well. That’s the second one.
The third one relates to a social justice consideration, where I would suggest not only for circumstances with mental health as the primary cause of suffering but also for physical health — I would extend it to that — that there be a publicly funded MAID advocate navigator who would be specifically trained in terms of having knowledge of health care conditions, but also be specifically trained in cultural responsiveness and supportive decision-making and non-directional advocacy, that sort of thing.
The fourth safeguard was with regard to adolescents in the sense that I wouldn’t support that a mature minor with a sole psychiatric health condition be eligible for a MAID assessment until they’re of legal age, given that there’s so much neural development still going on and it’s so early in the course of a long-term psychiatric illness. I’m not suggesting that a mature minor provision be applied to those who have profound suffering on the basis of psychiatric illness.
The final recommendation was that in each health jurisdiction, like a province and a territory, that there actually be a MAID-like commission like they have in Quebec, but essentially a formal means of reviewing all the occurrences of MAID to determine the underlying circumstances, to assess that and to report on it. I think on that particular review panel, there should be an independent psychiatrist involved in those circumstances where suffering is primarily on the basis of a mental health condition. That psychiatrist, of course, shouldn’t be one who is involved with the particular cases being reviewed.
So those are the five additional recommendations that I’m making. I’ve stayed away from things that would block access to MAID for persons with psychiatric disorders. I haven’t suggested that there should be a multidisciplinary kind of assessment or that there should be a formal panel review or anything like that. It’s just to make sure that the person doing the assessing in terms of capacity, in terms of the patient’s insight and in terms of all the elements of informed choice, be someone that’s highly trained to do so, and that person has the support of the prevailing or the attending mental health care provider to do that.
Senator Batters: Thank you. I wish we had more time because I have a few questions, but I’ll go first to Dr. Ramona Coelho.
You described how vulnerable patients can feel coerced into choosing assisted suicide. Could you explain that a bit further? Is there really a risk that bringing up information about MAID proactively, by the doctor or nurse practitioner, as an option to a patient, could be a subtle form of coercion?
You mentioned that you think that there are some amendments that need to be made. What amendments would you propose in order to reduce harm to your vulnerable patients?
Dr. Coelho: Thank you very much for the question. First, I would like to point out that you could listen to the House committee hearings and hear the story of Roger Foley and Taylor Hyatt if you want to hear someone sharing their first-hand experience of coercion.
I work with people who have very many injustices, like wealth disparity, a lack of access to services, and they can’t afford their pain meds or other meds. This group that I take care of are less likely to advocate for themselves the way other groups of people can. For example, I once sent a patient with osteomyelitis to the hospital. He was almost in shock. They told him he was fat and needed to lose weight and should take narcotics. He just took it and went home, and he almost died. I had to call an ambulance to get him to the hospital.
So to try to understand where my patients are starting from and how much they will respect and just accept what the doctor says to them about what they should do.
I have another patient who lost his limb by amputation. He had critical ischemia in his limb and I sent him to the hospital. They told him to go home and they would call him. After three days, I called to check on him. No one called. I called the hospital. They had forgotten about him. He didn’t go back and lost his limb. This is the kind of vulnerability that we’re going to expose to a life-ending legislation. I think it’s reasonable to understand that, for these patients, there should be clarity in the bill in terms of bringing up MAID.
I’ll explain that in this relationship with my patients, this kind of sacred trust that we have, I’m only offering them some things that are good. They really believe in me and trust me, and they don’t have a lot of other education. If I am to raise with them, when they are so fragile, that this is something that’s an option for them — and I’ve heard the way they interpret what other doctors are saying to them — they’re hearing it as an instruction to them and not in the same shared decision making that a well-off autonomous person might. The fragility there, the insecurity there and then the suggestion on top can push them to confirm that, yes, my life is not worth living. It’s very dangerous.
I have to also say that Catherine Frazee and Laverne Jacobs had very impressive testimonies. I agree with you saying this bill is ableist and discriminatory.
However, in terms of amendments, if we look at the Victoria, Australia legislation, which was only crafted for those who are dying, it’s very well written compared to this legislation in terms of the safeguards. You can read that. It says it should be a patient-initiated discussion. It should not be brought up by the health care worker.
The other thing lacking in this bill is clarity of when the 90 days starts. Why would it be in every other jurisdiction that this is the last resort? I think we all agree that if people could go on to live happy lives, why would we be offering them MAID? There is no clarity in this legislation. You’re expecting people to not have safeguards. I heard Minister Hajdu and Minister Qualtrough say there are these problems in this bill, but we have a timeline. That is not acceptable when we’re talking about vulnerable Canadians. It’s heartbreaking to hear that a timeline would supersede safety.
The Chair: Dr. Coehlo. Sorry, we could listen to you all day.
Dr. Coelho: I can stop.
Senator Dalphond: My question is for Dr. Coelho.
Dr. Coelho, you said that the discussion should be patient-initiated. So in discussions with the physicians, the psychiatrists, whoever is in the clinical relationship; it should be defined in the law that it has to be initiated by the patient. Once it is initiated by the patient, should there be an obligation on the doctor to engage in the discussion?
Dr. Coelho: I think all doctors have to be non-obstructive and provide information about any service. If a patient comes to me and asks me what medical aid in dying is, I will not obstruct. I will give information about what it is. I might try to tell them, as I should, that there are these options still on the table for them to pursue, that we could try to fight for more disability supports and that we need to get more PSWs in their house. I think that providing information is important. Did I answer your question?
Senator Dalphond: Some of your colleagues say that goes beyond their religious beliefs or their obligation as a doctor to fight for life.
Dr. Coelho: I can clarify.
Senator Dalphond: Therefore, they should not refer, or say you should go to somebody else — here is the name of someone that could assist you if you want to engage in that discussion. What you’re saying is that you should engage in the discussion, but some are really opposed to even refer.
Dr. Coelho: I think there is some confusion in the committee. I think I can provide clarity because I have worked a lot on conscience rights. Every single religious group that has been asking for conscience rights — Jews, Muslims, Christians, Hindus, Sikhs — all of them have agreed to give information about the issue and information to access.
I heard one of the senators saying that they understood what a referral is, but clearly we don’t, because the question keeps coming back to the committee, meaning there is a misunderstanding here that even conscience objectors are willing to give information in a socialized health care system. I can submit all of this if you need it. Every religious group has signed statements that they’re willing to give information about this, and they’re willing to tell people where they can go to get more information.
In Ontario, for example, you can give people the Telehealth Ontario number. But a referral is something very different. A referral is when I say: This is something I think is truly good for the patient. So I am going to, because it’s not part of my expertise, I am passing it on to a specialist to complete the care that I believe is good.
We don’t make referrals for things we don’t think are good to our patients. For example, if a patient comes to me who wants to take narcotics and has failed their urine test, they have cocaine; it would be very bad of me to make a referral to another physician for them to get narcotics. There is an ethical implication in a referral. It is not just a piece of paper and a signing off to someone else. That is why the information and the systems in place in most provinces work quite well, like B.C., Alberta, Manitoba having a robust system. They have not identified conscience objectors as an obstruction to access to MAID. I think that is important in a pluralistic society, that the system is set up in a way that respects everybody. I think it can be done.
Senator Dalphond: Thank you.
Senator Plett: Dr. Coelho just answered my question that I had for her on conscience rights. Thank you very much. That will allow me to ask a few questions of Professor Frazee and hopefully Professor Jacobs as well.
Thank you Dr. Coelho for that great answer on conscience protection.
Professor Frazee, you have spoken of the cases of Archie Rolland and Sean Tagert. Would you be able to, in a few minutes, elaborate a bit more on the circumstances surrounding these cases and what we can learn from them in the context of our study of this bill?
Ms. Frazee: Yes, certainly, senator. I would be happy to do that — well, not happy, but willing to do that.
These are two cases of concern, among many, that we have identified under the current law, not under a radically expanded law. Mr. Archie Rolland was a man who had ALS. He was coping. He had care in a facility that worked for him. His ALS was very advanced and he required very specialized care. Against his will and without his agreement, he was transferred, presumably for cost-saving reasons, to another facility where staff were not trained. For him, the impact was profound, because if people weren’t trained in how to care for him in his unique circumstances, then he would be left without any means of communication and any means of controlling the computer which he used to correspond and communicate with people, and to get help when he couldn’t breathe. His life became — if I may use the phrase — a living hell. When his mother was there to assist him, he documented all of his suffering with this inadequate care. He pleaded for well-trained personnel like he had had before. He attracted the attention of a reporter from the Montreal Gazette, who brought his circumstances to light, otherwise we would know nothing about his life and death.
In the end, Archie Rolland said, “It’s not the ALS that’s killing me.” He said it was his fight for better care, for decent care. So he chose MAID. In the current monitoring system we have, he simply shows up as someone who chose MAID, and who was indeed near the end of his life. But that isn’t what he wanted. That isn’t what he chose.
The same is true of Sean Tagert. If I have time, I can tell you briefly. He also had ALS. He had a wonderfully elaborate set-up in his home with his family, where he shared custody of his 12-year-old son, to whom he was devoted. Mr. Tagert required two additional hours of home care per day, and he fought for it with all of his might until he continued to be denied the care that he required. He was told he would have to go to an institution and told that he could not bring with him the extensive technology that was developed to give his life meaning and value, and he would have to move four hours away from where his son lives. So he wouldn’t be able to see him or spend time with him until the end of his life.
So he too chose MAID, and only because he brought it to public attention do we know about it. Otherwise, we would have no idea. He would just be another person who met all the requirements and received an assisted death. But he called the decisions of his local health authority — denying him the care that he needed — he called those decisions “a death sentence.” He didn’t die of ALS. He died of our neglect.
So the lesson we learned from all this is that even under the current law, which people say is too restrictive and has very extensive safeguards, people are suffering for reasons that are not because of their disabilities or their illnesses. They are suffering from social neglect. We’re not even paying attention to that. If we expand this system — I think this committee surely must now understand, with all the evidence that you’ve heard — that the problem is only going to worsen.
I’m sorry for taking such a long time to answer.
Senator Plett: Thank you very much, professor.
I’m sure I’m out of time, chair, so I’ll pass on Professor Jacobs.
The Chair: Professor Frazee, you don’t have to apologize. You have no idea how much we appreciate you taking the time to speak with us and to educate us. We really appreciate all that you are doing. Thank you very much.
Senator Boyer: Thank you all for presenting here today.
My question is for Dr. Kirby. One concern that the committee has heard over the course of this week is that individuals may choose MAID because they feel as though they have no other option, due to lack of access to adequate health care or support services. We certainly heard that today. To remedy this, it has been recommended that Parliament place a stronger burden of proof on physicians to ensure they not only inform but also facilitate access to alternative services.
In your opinion, what would this amendment entail for physicians, and would such an amendment be an effective accountability mechanism to ensure that patients have had access to alternative treatments?
Dr. Kirby: Thank you for that very important question. In my own view, I think for both conditions that are physical and mental health conditions, the social determinants of health are so important in terms of how people are treated, how they’re managed and how they actually experience their illness. Unfortunately, we haven’t been able to change our approach to addressing the social determinants of health rather than just kind of actively treating, in a Band-Aid fashion, illnesses once they become fully problematic and presenting.
Unfortunately, I don’t think we can hold up MAID legislation on the basis of there being inadequate attention to the social determinants of health. And, of course, that would apply equally I think to physical health and mental health services. For instance, there are inadequate integrated palliative care services across most of Canada, particularly the rural areas. Of course, the funding for mental health services is atrocious in terms of the burden of mental health illness there is in this country. The funding is actually disgusting really, in the levels of 3% or 4% to 10% per province or jurisdiction.
It’s a more systemic kind of issue to do that. I don’t think you can ask physicians to kind of force patients or even encourage patients to undergo or to get involved in various treatment interventions that they don’t want to engage in. I think with the legislation, Bill C-14, et cetera, it has been very careful not to say, “Well, you have to have tried everything and that has to have failed before you qualify for MAID.” It’s that you have to be presented with the information. You have to be told what’s available to you, what’s publicly funded, et cetera, what’s available to you and you choose among that.
But I do think physicians should work with other health care providers to facilitate the access of patients to a whole variety of other treatments as best they can, recognizing that if you don’t have clinical services for mental health patients in the community, that you have nothing to refer to. I don’t think we should hold back on MAID legislation because of inadequate attention to the social determinants of health.
Senator Boyer: So there wouldn’t be an amendment, then?
Dr. Kirby: What is that?
Senator Boyer: No amendment would do it, is that correct?
Dr. Kirby: If I’ve interpreted your question correctly, I don’t think a particular amendment is going to help.
I think that most physicians who are dealing with patients over time that have profound suffering, suffering that is enduring, have tried hard to facilitate their access to everything possible.
[Translation]
Senator Dupuis: My question is for Ms. Frazee. I would like some clarification. I listened to you carefully and I heard you say that the two gentlemen, Mr. Roland and Mr. Taggart, had died, in your words, “suffering from social neglect.” You said we should go back to the superior court and ask for an extension to address a certain number of issues. Do I understand correctly that you agree that people with disabilities who feel that their suffering is absolutely intolerable should have access to MAID?
[English]
Ms. Frazee: Thank you for the question. My position would be to support the current law, Bill C-14, prior to any amendment, which held that people who are nearing the end of their natural life — whether they are rich or poor, old or young, whatever their race, whatever their creed — would have the choice to die by MAID if they wished not to continue to live life until its natural end.
The point I was making — and perhaps I wore myself out before I finished — with the Rolland and Tagert cases is that their lives were of great value to them, and we have signalled, by our failure to provide for their needs, that they were of less value to our country or to their province or to whomever had the responsibility for providing them with the means for a dignified life.
We take this principle out and look at what Bill C-7 proposes, and that is where I have a fundamental and overwhelming objection. I believe that disrespect, that lack of value for the lives of disabled people, is the foundation for Bill C-7.
To speak to some of the other issues that have been discussed here, to suggest that there is an amendment that can somehow safeguard against what we are doing to the people whom we have already forced to the margins of society — a safeguard that can counteract the message that if you have disabilities or a disabling condition, whether it is an illness or a disease, that your suffering is such that it is, as one of your other panellists has said, hopeless, that there is nothing that we can do, nothing that we will do to boost your resilience — to emphasize that we value your life and the contributions that you make with that life, that’s what has to be addressed. That’s what the court failed to address in the Truchon case, and that is the underpinning of Bill C-7 and what we must correct before proceeding.
[Translation]
Senator Dupuis: Thank you. I’d like to ask you something. Had Mr. Roland been able to —
The Chair: Sorry, Senator Dupuis. You are out of time.
[English]
Panellists, I have become quite emotional listening to all four of you. You have enriched our experience and taught us a lot. I want to thank you very much for your presentations. Professor Jacobs, Dr. Coelho, Dr. Kirby and Professor Frazee, thank you very much for taking the time to meet with us and for giving us such powerful presentations. You have also given us submissions, and I can assure you that we will be reading those submissions very carefully. Thank you very much.
To our next three panellists, I want to thank you for being here today. It is really important for the Legal and Constitutional Affairs Committee to hear from you while we are studying this bill. Welcome.
I ask that you please take five minutes per presentation. The panellists we have are Professor Stéphane Beaulac, University of Montreal; Professor Isabel Grant, University of British Columbia; and Geoffrey Kelley, Former Member of the National Assembly of Quebec.
We will start with Professor Beaulac.
[Translation]
Stéphane Beaulac, Professor, University of Montreal, as an individual: Thank you for the opportunity to appear before the committee. In the five minutes I have, I would like to make two points. First, I want to say that there is a major and fundamental problem with Justice Baudouin’s decision in Truchon. Consequently, from a legal and constitutional standpoint, the basic premise on which Bill C-7 is based is unquestionably weak and problematic.
The error made by the lower court was not in relation to section 7 or 15 of the Canadian Charter of Rights and Freedoms. The problem was the court’s lack of deference to the legislative choices made by Parliament, specifically, in 2016, in the form of Bill C-14 in response to the Carter decision. After conducting a meticulous and comprehensive study, Parliament legalized medical assistance in dying and set out the corresponding criteria and requirements. Not only is Parliament better equipped than the superior court to perform that function, but it is also constitutionally mandated to pass and reform legislation in Canada. That is all the more true in Quebec’s case, with the passage of the Act Respecting End-of-Life Care in 2015 following more than six years of study and consultation. I won’t beat around the bush or use doublespeak — I am a professor after all. How can the Superior Court of Québec be justified in substituting itself for the legislative choices that had been made only a few years prior? Although the decision is only 175 pages long, that is what it does. I am not a believer in the misbegotten notion of a government of judges or other judiciary-based conspiracies; I will leave that to the demagogue commentators we are all familiar with. However, legally speaking, as far as the case law is concerned, I would simply suggest that the 1999 Mills decision and the famous dialogue metaphor were not properly applied by Justice Baudouin of the Superior Court of Québec in Truchon. I say that with all due respect.
The situation in this case clearly involves finding a balance between conflicting interests and societal values, as the preamble to Bill C-7 stipulates. This kind of complex social problem — especially since Bill C-14 was passed less than five years ago, in 2016 — was the response to the Carter decision, as we know. The circumstances demand a high level of deference by the court. My first point, an institutional argument, is tied to the dialogue metaphor and suggests that the decision in Truchon is wrong, thereby perverting the basic premise of Bill C-7, and that is the part that matters.
I will now turn to my second point. Bill C-7 may not be passed if the Senate of Canada exercises its statutory veto, which it has the power to do. In my view, that would have a very positive impact, indeed, on Canadian law. That may surprise you, but allow me to explain. Some have suggested that this would create a legal vacuum because the suspension of the declaration of unconstitutionality would end and thus invalidate the Criminal Code provisions requiring a reasonably foreseeable death. It is important to keep two things in mind. First, legal vacuums have always existed in Canadian law and, if I may say, the sky has not fallen. It is not the end of the world. Think of the Morgentaler decision, which created a so-called legal vacuum regarding abortion in Canada.
Second, the Truchon ruling and its non-application, which would be opposable to the reasonably foreseeable natural death criterion, would be limited to Quebec’s jurisdiction — to put things in perspective. In the rest of Canada, the legislative integrity of Canada’s Criminal Code would remain intact. Of course, that would give rise to some asymmetry. Let me be clear, that would not be the first or the last time that a federal law or legal standard had been deemed unconstitutional in a province and continued to apply in one or more other provinces. We need only think of the legalization of same-sex marriage in the early 2000s, not all that long ago. I will come back to that example shortly. There are times when different legal decisions prevail in different provinces, giving rise to an asymmetrical reality, and in my view, the impact can be very positive. In the case of same-sex marriage, that asymmetry led to a varied body of legal reflection built on arguments advanced by dozens of distinguished lawyers — lawyers who scrutinized and documented the issues, who proposed ways to balance the opposing interests and values. As we all know, the issue reached its culmination when the Supreme Court rendered its decision in the reference regarding same-sex marriage in 2004.
Coming back to the matter in hand, I must point out that Bill C-7 is rooted only in a small decision by a Quebec lower court. The fruit is not yet ripe, to use an expression politicians sometimes like to use. The Trudeau government seems to have been in a rush to deal with the matter, perhaps for political or electoral reasons.
I urge you to let the courts, perhaps even many courts, do their job. The government could then come back with what would likely be a better proposal to reform medical assistance in dying. The latest evidence of the government’s haste is the debate around the mental illness exception in relation to MAID requests, a debate that has sparked extensive discussion. I don’t have time to go into detail, but I would be happy to address it later.
The Chair: Thank you, Mr. Beaulac.
[English]
We will now go to Professor Grant.
Isabel Grant, Professor, University of British Columbia, as an individual: Thank you for giving me an opportunity to speak to you today about Bill C-7.
I’m a law professor at the University of British Columbia, and I specialist in criminal law and mental health law. I have also taught courses on the Canadian Charter of Rights and Freedoms.
I am here today to suggest to you that Bill C-7, as it currently stands, is vulnerable to a section 15 challenge under the Charter, on the basis that it denies equal protection of the law to people with disabilities. The reasonable foreseeability of natural death provision in the Criminal Code is a profoundly important safeguard that prevents people who are not dying from choosing death because we, as a society, have failed to offer them a meaningful and dignified life.
When Bill C-14 was introduced, the government fully acknowledged that this was a fundamental safeguard. Their background document said that allowing MAID in circumstances where a person is not approaching natural death could be seen as undermining suicide prevention initiatives and normalizing death as a solution to many forms of suffering.
Last week, the Supreme Court of Canada decided an important case on disability in section 15. In that case, they said that section 15:
. . . expresses a commitment to recognizing the essential, inalienable equal worth of all persons through the law . . . .
To continue:
. . . . the “root of s. 15 is our awareness that certain groups have been historically discriminated against, and that the perpetuation of such discrimination should be curtailed” . . . .
Now, a court approaching section 15 takes two steps to the analysis. The first inquiry is this: Does this law make a distinction on the basis of an enumerated or analogous ground under section 15? It’s beyond dispute that Bill C-7 makes a distinction based on a subset of people with disabilities. The courts have been very clear that discriminating against even a subset of a group from an enumerated ground violates section 15. That is clear from the Eldridge decision as well as the decision in Fraser last month.
The next step in the section 15 analysis is to ask: Is that distinction or is selecting out disability in that way discriminatory? That inquiry asks whether the law has the effect of “reinforcing, perpetuating or exacerbating . . . disadvantage . . . .” including historical disadvantage.
I’m suggesting to you today that singling out the suffering that is associated with disability as of a different quality and kind than other types of suffering is based on an ableist stereotype that significant disability is simply worse than death. If we give up suicide prevention efforts for people suffering with disabilities, we are saying that their lives are less important.
Now it’s true that only people who choose MAID will receive it. However, the decision in Fraser, again, makes clear that the fact that people can choose an option that is discriminatory doesn’t mean it’s not discriminatory. Again, from the Fraser decision:
The Court has consistently held that differential treatment can be discriminatory even if it is based on choices made by the affected individual or group.
This is particularly the case — this is so important for Bill C-7 — where those choices are constrained by the kinds of systemic inequalities you have been hearing about from witnesses all week.
Again, to quote the Fraser decision:
In contrast to formal equality, which assumes an “autonomous, self-interested and self-determined” individual, substantive equality looks not only at the choices that are available to individuals, but at “the social and economic environments in which [they] pla[y] out.”
Now, you have probably heard a lot about Truchon this week, and you’re asking, “But what about the Truchon decision?”
As someone who has taught criminal law for more than three decades, I can tell you that it’s unprecedented to see the government seek to amend the Criminal Code after one trial decision striking down a law in one province. As the previous witness mentioned, that just doesn’t happen. Truchon is not binding on other trial courts in Quebec. Only the Quebec Court of Appeal can bind all Quebec courts, and most importantly, no court in another Canadian jurisdiction is bound by the Truchon decision.
The government made the choice not to appeal Truchon, but there are options that are still available. I would like to briefly suggest some options to you.
The simplest one might be to go back to the courts in Quebec and ask for another extension. The government has done that in the past; has gone back more than once on several occasions. Canadians look to the Senate to be a chamber of sober second thought, and I urge you to take the time you need to fulfill that important role, particularly when we are talking about the life and death of a Charter protected group in this country.
Second, and this is the option I would prefer, would be to let the suspended declaration of invalidity lapse. Now this might create a bit of uncertainty in Quebec as doctors might not feel comfortable relying on one trial judge to sufficiently protect them from criminal liability for assisted suicide. Doctors and disability groups in Quebec could seek guidance from Quebec courts. The important point to remember here is that the Supreme Court of Canada is the final arbiter of constitutional rights in this country, not one judge in one province. That completely undermines our federal system in this country, not to allow this matter to be resolved by the Supreme Court of Canada.
And —
The Chair: Thank you, Ms. Grant. We will now hear from Mr. Kelley.
[Translation]
Geoffrey Kelley, Former Member of the National Assembly of Quebec, as an individual: When it comes to the issues surrounding end of life, not only are they complex, but they also arouse passion. As a member of the National Assembly of Quebec, I had the privilege of chairing the Select Committee on Dying with Dignity while it conducted its public hearings from 2009 to 2011. That was the most rewarding experience of my parliamentary career.
As a committee, we approached our work in a non-partisan way. I could rely on the cooperation of my fellow member Véronique Hivon, the committee’s deputy chair and a Parti Québécois member. We held hearings in eight cities across Quebec, hearing from medical, legal and ethical experts. Representatives of civil society organizations, professional associations and religious institutions appeared before the committee. Most of the witnesses, however, were ordinary citizens wanting to share their experience with the death of a loved one or talk about the health care services that had been provided. We capped off our hearings with an open mic session where people in the room were able to tell their stories. In all, the committee heard from more than 300 people.
In light of that experience, I wanted to share a few observations with the members of this committee.
First of all, when the committee set to work after the public hearings, the members were already cognizant of the fact that we could not resolve everything by passing a piece of legislation. The decision to open up access to medical assistance in dying was already controversial, so parliamentarians chose to focus on cases where adults were capable of giving free and informed consent and were in the terminal phase of a disease, in accordance with a robust process to ensure vulnerable people were adequately protected. Discussions around people who were incapable of giving consent, advance directives, cases involving minors and cases involving mental illness were not conclusive at the time.
Second, further to that approach, governments and health networks gradually introduced procedures to follow through on the intent of lawmakers. The sky did not fall, as they say, contrary to what some had expected.
Third, despite Justice Baudouin’s instruction and the need for a swift response, the next steps must be patiently and carefully considered, to ensure that the professionals working under the new framework are trained and that the public is educated on the proposed reforms. Bill C-7 endeavours to achieve a new balance between access to medical assistance in dying and protection of vulnerable people. Taking the time to educate patients and their families about the proposed amendments is key.
Fourth, during our public hearings, suicide prevention groups repeatedly warned us of the bill’s impact on efforts by governments and community organizations to prevent suicide. They felt that terms like “assisted suicide” were confusing. We noted the same concern in the recent testimony of Indigenous representatives.
Fifth, where issues remain unresolved, the debate will continue, particularly in relation to suffering and mental illness, advance directives, and minors. The Council of Canadian Academies released a report on those issues. It is important that the process continue as needed following the passage of Bill C-7. The public’s participation in the process is essential given that the issue of medical assistance in dying extends beyond the legal realm. In consulting the public, we benefited from great insight and were privy to many end-of-life accounts where the services available did not meet the needs of patients or their families. I am pleased to see the bill refers to such services as palliative care, but universal access to those services is still lacking. When it comes to the availability of psychological services, the wait lists are long, not to mention unacceptable. This bill is a step in the right direction, but this important debate will continue and efforts to address the gaps in service availability must be a priority.
Sixth, while we wait for the debate on advance directives, the experiences related to the waiver of final consent may guide us in the future. Health care systems will need to specify guidelines for patients who give consent, knowing that their illness may prevent them from doing so in the face of foreseeable death. This isn’t the expanded access advocated by some people. However, the guidelines developed will be useful for a possible discussion on advance directives, particularly in cases of dementia such as Alzheimer’s disease.
In conclusion, Bill C-7 is part of a careful approach to the issue of medical assistance in dying. It will address certain situations that have arisen since the adoption of Bill 52 by the National Assembly in 2014 and of Bill C-14. The bill attempts to strike a balance between the right claimed by some people to control their destiny and the necessary protection of vulnerable people and people living with a disability. The search for this balance will always be a work in progress. However, the two keys to success are to maintain a non-partisan environment where the opinions of others are respected, and to involve the public in the deliberations. Death is our common destiny. It will affect all Canadian families at some point. It’s in our best interest to listen to the public and to provide the necessary services before death and for the bereavement that follows.
The Chair: Thank you, Mr. Kelley.
[English]
Senators, we will go to questions. You have three minutes. Please select the person you want to answer the question.
[Translation]
Senator Petitclerc: I have a question for Mr. Beaulac. You said that a legal vacuum isn’t too serious. I can’t help but think that, yes, we know that medical assistance in dying is legal. However, it’s also moral, medical and human. I want to hear your views on this. According to the minister, this human aspect is why Canada hasn’t appealed the Truchon decision. I wanted to address this and ask for your input. It’s true that Bill C-7 will give Canadians the opportunity to access medical assistance in dying when death isn’t reasonably foreseeable. Quebecers can do so now by making a request. We know that 11 individuals have already taken advantage of this possibility and that two haven’t yet been heard. What do you think about the human aspect of all this?
Mr. Beaulac: Thank you for the question, Senator Petitclerc. Unfortunately, I’m only a lawyer, who is also human. I wear the hats of a constitutional expert and a law professor.
Let’s be clear. The legal vacuum isn’t the end of the world, but it isn’t great either. This vacuum comes up against values associated with the rule of law, which constitutes an integral part of good governance. In other words, it undermines predictability and legal certainty.
I was trying to make two points. First, it wouldn’t be unprecedented, because there are other very challenging issues related to deeply moral matters, such as abortion. In the 1980s and 1990s, these matters were the subject of a constitutional challenge and were declared inoperative under the provisions of the Criminal Code.
You may recall that the Mulroney government tried to reform the Criminal Code and was ultimately unsuccessful. Truth be told, for the past 32 years, there has been a legal vacuum with respect to abortion. This doesn’t mean that abortion isn’t regulated by provincial legislation that concerns the right to health. However, the Canadian Criminal Code has withdrawn from abortion matters for over 30 years.
To draw a parallel, I’d say that we can certainly live with a legal vacuum regarding whether the reasonably foreseeable natural death criterion should be maintained. Second, as I was saying in broad terms — and my colleague from British Columbia agrees — this concerns only Quebec.
I drew another parallel with the situation of gay marriage. In Canada, we put a stop to the potential benefit of having a range of decisions that could help you, as legislators, weigh the ins and outs and balance all these interests and values, a number of which are contradictory, to ultimately ensure a better end product.
In other words, if Bill C-7 dies... Pardon the pun. If the bill isn’t passed, we can certainly come back and study it again — in Ontario, British Columbia or elsewhere — before Canadian courts, to flesh out the thought process within the various levels of government in Canada, for both the judiciary and legislative authorities.
Senator Carignan: My question is for Professor Beaulac. If I understand correctly, you’re saying that certainly other cases in the rest of Canada are challenging various constitutional aspects of Bill C-14.
Let them flourish or let them go, perhaps all the way to the Supreme Court, to determine whether Bill C-14 is truly unconstitutional. If it is, let’s find out which sections are unconstitutional. That way, we can get back to our discussions and complete the exercise set out in Bill C-14, which is the committee scheduled to meet in 2021 to study the issue of advance directives, the exclusion of mental illness and the case of young people under the age of 18. We can do all this in a quieter and calmer environment and take more time. As a result, we’ll be able to make more well-considered decisions.
I also gather that Bill C-7, if passed without amendments, will be challenged in any event, particularly with regard to the exclusion of mental illness.
Mr. Beaulac: Thank you for the question, Senator Carignan. In terms of your first point, I agree with you —
[English]
Senator Plett: Madam Chair, could I interject for one second? I really apologize for this intrusion. Most of the time when people are speaking in one language and it’s being translated, the language they’re speaking in is very quiet. Senator Carignan just spoke in French and I could not hear him. I could hear only the translator which allows me to listen properly. When the professor has been speaking, his voice is coming through very clearly in French and we have a soft-spoken translator translating and I have — and I know I’m older than most people on this call — no proper way of really knowing what the professor is speaking about. Is that an issue that is in the translation booth? Because if it is, I would appreciate it being corrected somehow. It was fine when Senators Petitclerc and Carignan talked, but when the witnesses are speaking, they’re speaking over each other.
The Chair: Senator, you are not the only one. It is true for a number of us. Can the clerk please look into what the issue is, please?
The Clerk: Yes.
[Translation]
Mr. Beaulac: Regarding the first point, I agree with Senator Carignan. Basically, we have a decision of a lower court — I don’t want to diminish how seriously we take these issues and Justice Baudouin’s important decision. I pointed out earlier that, in our system, when it comes to assessing and studying complex issues such as medical assistance in dying, the best resources aren’t in the legal field. In a number of situations, when it comes time to verify legality and constitutionality, the watchdog role of the judiciary involves intervening, overturning judgments and declaring provisions inoperative and putting them back in the hands, if I may say so, of the legislator. This happened with the Carter decision. This was followed by the careful study and balancing of the various interests involved, and then Bill C-14.
A few years later, these provisions are being challenged, and we have the Truchon decision. I’m trying to convey that there isn’t any cause for concern. We could very well let the time frame for the suspension of unconstitutionality expire. That way, the legislation would be unenforceable in Quebec, but would remain fully enforceable in the rest of Canada. Other cases suspended as a result of Bill C-7 would be resumed. These cases would be the subject of a legal debate, decisions and judgments and could be referred to the highest court in the country. If I understood my colleague from British Columbia correctly, this is the desire in other parts of the country.
Second, in my humble opinion, the Trudeau government’s rush to address this issue is also reflected in the provision, which specifically excludes mental illness as a possible basis for applying for medical assistance in dying. The preamble of Bill C-7 even refers to the need for more consultations. I’d suggest that the consultations be removed while the legal proceedings continue in other parts of the country. Eventually, we can have a debate. If the Truchon decision is upheld in other parts of the country, there will be a debate in the Parliament of Canada. We will then have all the information needed to come up with a lasting solution once and for all.
[English]
Senator Campbell: I’ll pass on this round. I found the information in the notes from the witness. Thank you.
Senator Batters: My question is to Professor Isabel Grant.
Thank you very much for attending today and thank you for your important Charter analysis advising us that Bill C-7, in your view, violates section 15 of the Charter, as it discriminates against disabled people. Given that I have limited time here today, I want to pivot to a different point.
Given your significant legal and constitutional expertise on these subjects, could you please explain to us why excluding mental illness as a sole condition for MAID in Bill C-7, in your learned opinion, is not discriminatory and not unconstitutional? Thank you.
Ms. Grant: I have lost the sound. I did not hear Senator Batters’ question. Can someone paraphrase the question?
Senator Cotter: Do you want me to ask the question?
It’s Brent Cotter here. The question was whether you could offer your explanation or your view as to why the exclusion of mental health as a sole underlying condition is constitutional?
Ms. Grant: I think I look at this a little bit differently than some people. I don’t think this legislation is targeting people with mental illness. I think, to the contrary, that group of Canadians is being treated the same as other Canadians who only have access to medical assistance in dying when they are at the end of their lives. I think it is, in fact, other people with disabilities who are being targeted by Bill C-7.
The clarification that people with mental illness are not eligible for medical assistance in dying on that basis in fact is a protection and a safeguard that other Canadians share who are suffering intolerably. It is other people with disabilities who are targeted by this legislation.
Senator Batters: Thank you very much.
Thank you, former Dean Cotter.
[Translation]
Senator Dalphond: My question is for Professor Beaulac. The situation here is quite unique. The federal government and the Attorney General of Quebec haven’t launched an appeal. Two parliaments have chosen to accept the superior court decision and then act accordingly. This makes it a political choice, and no longer a legal matter.
In this situation, is the legal solution the best solution? Should we let the other provinces look at this and put the issue on hold at the federal level? Wouldn’t the best solution be to ask the federal government to refer Bill C-7 directly to the Supreme Court before the bill is passed? Or, after the bill is passed, but before it comes into force, in order to seek the opinion of the Supreme Court? In the meantime, of course, the Supreme Court can suspend the application of the superior court decision.
Instead of overlooking various challenges across the country, wouldn’t we have a more coordinated debate if we let many people get organized and spend a great deal of energy and effort to go to the Supreme Court in a few years?
Mr. Beaulac: Yes. Thank you for the question, Senator Dalphond.
Perhaps my first reaction would be to remind you that letting the matter go before the provincial courts isn’t only negative. In my view, more research, court arguments and court decisions would significantly enhance the debate. Certainly resources would be required. However, ultimately, to ensure a better end product, I think that it would be worth the effort.
Regarding your first point, if I understood you correctly, I think that you were talking about conducting a consultation or referring Bill C-7 to the Supreme Court of Canada. However, in my humble opinion, we don’t yet have all the information that we could obtain in terms of the provisions currently in place. In other words, before moving on to Bill C-7, I’d like to clear up the issue or issues concerning Bill C-14. That’s why I suggested earlier that we let the time frame for the suspension of unconstitutionality expire, which would make the legislation unenforceable and inoperative in Quebec, but wait until we can benefit from more court decisions across the country. This would be possible after a certain amount of time and a certain number of decisions. As in the case of gay marriage, we could expect the federal government to play a leadership role and to ask the Supreme Court to address the issue by way of a reference.
Senator Dalphond: This would force Quebec to wait several more years, while it’s waiting to rewrite its own legislation?
Mr. Beaulac: The Quebec legislation, within Quebec’s jurisdiction, could very well be reformed, in light of Justice Baudouin’s decision. Obviously, since we’re at the federal level, what interests you in the Senate of Canada is Bill C-7. I think that the priority for this issue at the federal level might be to let the decisions that feed the debate come from other parts of Canada, and possibly refer the matter to the highest court in the country.
In this case, as I suggested in my presentation, I’m concerned that the debate was rushed as a result of the fall 2019 election. We’re now faced with a situation where we have a bill that’s flawed in many respects. We can’t benefit from the judicial consideration process that we would have carried out before, as was the case in the early 2000s with the issue of same-sex marriage.
[English]
Senator Plett: Professor, we have had many witnesses over the course of this pre-study; I think the chair said 81 earlier today. I am not sure that we have had a single witness who was comfortable with the legislation in its current form. You clearly are not either; you are one of those.
Many are concerned about the inclusion of those with a disability in this legislation. Some are concerned that those with mental illness as a sole underlying condition are not included in this bill. There is far from any level of consensus among our witnesses or committee members on any part of this bill. We have heard repeatedly that the proper supports are not in place for vulnerable communities, and that we cannot offer them a fair and honest choice with this expansion. We have heard of the lack of meaningful Indigenous consultation.
Yet, we are being asked to study this paradigm-shifting legislation very quickly because, again, of the lack of government doing the legislation properly. We now have to meet a deadline before any proper parliamentary view has taken place.
Professor, I clearly understand that you believe Canada would be better off not passing this legislation. I’m not going to ask you to repeat things that you have already said. You have given us some insight into what would happen if this bill does not pass. In practical terms, professor, what happens on December 18, the superior court deadline, if this bill does not pass, or the government asks for an extension?
Mr. Beaulac: Thank you very much indeed for your question. I’ll start by going back to the first point you made. Of course, I’m uncomfortable with Bill C-7, but chronologically, first of all, I’m uncomfortable with having a reform of the legislative scheme based on an inferior court decision from one province only.
I think that some of the many problems that we have downstream are caused upstream by the fact that we have such thin information, and very little in terms of judicial reflection. This is not being too harsh with regard to the Quebec superior court decision by Judge Baudouin. She did a fantastic job — a judgment of some 175 pages that is thorough, well researched and rigorous. But, with all due respect, it is only one single superior court decision. We don’t have the benefit of many judicial instances from across the country evaluating the constitutional validity of that specific requirement of the Criminal Code.
Now, you asked me in practical terms — something that a university prof might not be the best person to answer — what will happen on December 18? Well, in the morning the sun will rise and there will be just a regular day for everyone across the country except for those, I guess, in the province of Quebec, which, if they want to, will benefit from the legislative scheme without the requirement that is at issue, and that is whether or not natural death, reasonably foreseeable, meaning that it will be just in this jurisdiction. With regard to the Quebec legislation also, the situation will be different from the December 18 to the 19.
For the rest of the country, it will probably signal that the cases that are pending in front of provincial courts or courts of provinces will be re-enacted, so that they will be pursued. We will eventually have more judicial decisions that will eventually lead to, I would submit, a better final product when the issue comes back before Parliament.
The Chair: Thank you.
Senator Boyer: My question is for Professor Grant.
In the Policy Options article that you published this month, you discussed the implications that the expansion of MAID will have on vulnerable Canadians. In particular, you write that Bill C-7 has been rushed through the legislative process without adequate consultation.
In your opinion, what consultations still need to be done? More specifically, what steps must Parliament take in order to ensure that the rights of vulnerable Canadians are respected in the context of MAID?
Ms. Grant: Thank you, senator, for the question. In the article that you’re referring to, the point I was making is that given the profound social inequality that you have been hearing about all week from people with disabilities, like Mr. Beaulac, that we need a decision from a higher court about the constitutional rights of people with disabilities.
We are talking about a law that would allow doctors to end the lives of people who are not at the end of their natural lives. That’s about as profound an exercise of state power as we can imagine in this country. We need to make sure everybody has been heard. The Senate has done an amazing job this week of hearing from witnesses. I haven’t heard from everybody, but Indigenous disability groups, for example, did not have an opportunity to talk to members of the House debating this bill. They did appear before the Senate. There are many other disability groups who feel like they have been trying to be heard on this issue. It’s interesting to me that this is the first time in my life that I have seen every disability group onside on this issue, that ending the lives of people with disabilities who are not at the end of their lives is a drastic and fundamental piece of legislation that shouldn’t be done in a hurry, and that needs to get guidance from the Supreme Court of Canada.
Another option that wasn’t mentioned earlier is that the government could even refer Bill C-14 to the Supreme Court of Canada and see if it is constitutional. It made the decision not to appeal Truchon. We’re kind of stuck, but we’re stuck because of the government’s strategic choice not to appeal that.
They didn’t do that in Carter. I hope this bill will not pass in its current form.
Senator Boyer: Thank you, professor.
[Translation]
Senator Dupuis: My question is for Mr. Kelley. You spoke about public involvement, which is essential. I’d like you to provide some examples of how you’ve consulted directly with the public, not just with interest groups or incorporated groups, but the initiatives taken by the committee that you chaired to reach out to the public in different ways.
Mr. Kelley: As I said, it was the richest experience of my parliamentary life. First, we left Quebec City because our parliamentary committee proceedings often took place in the capital. We went to different cities in Quebec. There was an extensive online survey in which over 7,000 people participated.
I want to emphasize one thing. I agree with Professor Beaulac. We aren’t in a hurry and we must take the time that we need. A great deal of time was spent preparing, for example, the special committee’s final report, since we held 52 working meetings. It was very difficult to reach a certain level of unanimity among parliamentarians. Patience is needed and the public must be educated before major changes are made. Professor Grant spoke about very significant paradigm shifts. When I read Justice Baudouin’s decision, I was sorry to see a six-month time frame for making such fundamental changes. The time frame is too short. We must take the necessary time to properly inform the public. Yes, this is a major legal debate. However, there are ways to reach out to the public. This surprised me, but many people have things to say. We acknowledge the importance of bereavement services, for example. I remember that, when we were in Chicoutimi, a lady put a picture of her mother on the witness stand. Her mother had died 15 years earlier, but the lady was still mourning her death. It’s in our best interest to look at all end-of-life conditions, not just the issue of medical assistance in dying, but also all the services provided to the public. I sit on the board of directors of a palliative care centre in Montreal. This debate is creating a great deal of unease among people who work in palliative care centres. A great deal of public education must be done. That’s why we must take the time needed to debate this issue. Professor Beaulac and politicians in general say that the issue isn’t resolved yet, and sometimes they’re right.
Senator Dupuis: Thank you.
[English]
The Chair: Thank you very much.
Senator Cotter: Thank you very much. Thanks to the witnesses for being here. This one seems populated by a collection of Dalhousie law school graduates. That’s even true of Senator Dalphond in part, I think.
I listened to Mr. Beaulac’s observations about whether it is possible to let the matter in Quebec drift and cases get developed elsewhere. My question is for Professor Grant as a criminal law professor more than a constitutional professor. I find that concerning in the sense that, while this might be like the same-sex marriage situation — how cases percolate away in different jurisdictions, and an important issue, not a life and death issue as we described here — I’m worried about the degree to which we would have a different criminal law in a country for a period of time if we took that approach. And in ways that make the community of interest that you’re most concerned about in these remarks vulnerable in Quebec, maybe less vulnerable elsewhere.
I’m interested in your view on whether Senator Dalphond’s suggestion about a constitutional reference — not necessarily on one bill or other but the themes that we’re addressing — might be a more expeditious way to go in the way in which it has been in a few other circumstances.
Ms. Grant: Thank you Senator Cotter, my former law professor. It’s much more common than people realize to have criminal laws that are unconstitutional in one province and constitutional in another. There are defences to murder — so issues with very significant consequences — that have been struck down in British Columbia but in the rest of the country are being applied. We need to recognize that in a federal system, that’s actually quite normal to have that happen. Things work their way up. That’s why we have the Supreme Court of Canada as the only court that can bind Canadians across the country.
Having said that, I think a reference, while more expeditious, also has its limits. What you don’t have with a reference is a really solid evidentiary foundation on which the court can make its decision. I would hope that if we were going to have a reference, that we could think about creative ways to allow that evidentiary record to be built and to be before the court. That should have happened by appealing Truchon to the Quebec Court of Appeal and then to the Supreme Court. We didn’t do that. It’s too late to do that now. But if we are going to think about a reference, let’s find a way to really make sure that the Supreme Court of Canada has an evidentiary foundation that is widely represented in making that important decision.
I want to stress that we have Criminal Code provisions found unconstitutional in one province and not in another province on quite a regular basis. Mandatory minimums is a good example of that. I don’t think it’s as unusual as it sounds when we describe it in more abstract terms. Granted, those laws may not be dealing with life and death in the same way, but they are dealing with very significant penal consequences for people before our courts. Thank you.
The Chair: Thank you very much. To all three panellists, I want to say to you that you can see how much interest there is. If we had another two hours we would still have a lot of questions of you. Thank you very much for coming. We appreciate you coming at such short notice and giving us so much information. We certainly have learned a lot from you. Thank you very much.
(The committee continued in camera.)