Good afternoon, and welcome to the ninth meeting of the Special Joint Committee on Medical Assistance in Dying.
I would like to begin by welcoming members of the committee, witnesses and those watching this meeting on the web.
My name is Marc Garneau, and I am the House of Commons' Joint Chair of this committee. I am joined by the Honourable Yonah Martin, the Senate's Joint Chair.
Today, we are continuing our examination of the statutory review of the provisions of the Criminal Code relating to medical assistance in dying and their application.
The Board of Internal Economy requires the committee to adhere to health protocols. I'm not going to name them, because by now you're very familiar with them and they're in effect until the end of Parliament in late June.
Before beginning, here are a few pieces of administrative information. I'd like to remind the members and witnesses to keep their microphones muted unless recognized by name by the joint chairs. I would remind you that all comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly. Interpretation of this video conference will work like an in-person committee meeting. You have the choice at the bottom of your screen of floor, English or French.
With that, I would like to welcome our first panel of witnesses today. Here on the first panel to discuss whether to permit medical assistance in dying for mental illness in Canada, we have Mr. John Maher of the Ontario Association for ACT & FACT. We also have two individuals, Dr. Georgia Vrakas and Dr. Ellen Wiebe.
Thank you for joining us here today. We'll begin in the usual fashion. You will each have five minutes for an opening statement. I would ask you to respect that five minutes, so that we can allow as many questions as possible.
We'll start with Mr. Maher. You have five minutes.
Thank you very much, and thank you for the invitation.
The Canadian Mental Health Association, CAMH, the Canadian Association for Suicide Prevention and my own organization, the OAAF, which is the largest professional association of community-based tertiary mental health care in Canada, to name but a few, have all denounced Bill . Anyone who says there is an emerging consensus is grossly misinformed or worse.
The Quebec parliamentary commission listened to the facts. I am hoping that you will listen to the facts, because what is happening is tragic.
I am a psychiatrist, and I'm a medical ethicist. For 20 years I have worked only with adults who have the most severe and persistent forms of mental illness, in cockroach- and bedbug-infested rooming houses and on the streets, where our wealthy society forces them to live in poverty, our sons and daughters treated as social outcasts.
MAID activists say everyone must be able to access MAID regardless of crushing poverty, the shocking lack of treatment availability, protracted wait times of years or having brain diseases where it is impossible to predict irremediability. The rallying cry is autonomy at all costs, but the inescapable cost is people dying who would get better. What number of mistaken guesses is acceptable to you?
Death is not an acceptable substitute for good treatment, food, housing and compassion. You who voted for this law have not understood vulnerability and what it means for your doctor to offer you death over life. Do you seriously believe that you can prevent abuses by the 100,000 M.D.s and nurse practitioners in Canada who now have a licence to kill? Please read the news.
You know that Bill is not consistent with the Supreme Court's stated principle in Carter to preserve life. The ruling explicitly supported people getting help killing themselves only when they could no longer physically do it themselves. Please make a referral to the Supreme Court if you are so sure about how they will rule, because justice and the preservation of life demand it.
I am hearing shock and disbelief from psychiatrist colleagues. When the Ontario Medical Association in 2021 had a survey that asked Ontario psychiatrists clear questions after Bill became law, 91% objected to the law, 7% were uncertain and only 2% supported what this bill has done—only 2%.
Psychiatrists don't know and can't know who will get better and live decades of good life. Brain diseases are not liver diseases. If guesswork is good enough for you, it is not good enough for psychiatrists who understand the science and respect our duty to abide by a professional standard of care. You have been systematically misled by discriminatory ideology over clinical reality. Passing a law telling psychiatrists to make impossible predictions doesn't magically make it possible.
Some of my patients are now refusing effective treatment to make themselves eligible for MAID. They have been susceptible to the perverse lie that it is not suicide. Suicide is always clinically defined as taking the steps to arrange your own death. The Canadian Association for Suicide Prevention has stated that all MAID for mental illness is suicide. The frankly bizarre assertion that suicide is always an impulsive and unplanned act is not rooted in reality. Only 7% of people who attempt suicide in Canada actually die. I'm asking you, what will that percentage become? Likely number one in the world.
In the few European countries that at least require that standard treatments be tried before euthanasia, there have been steady and significant rises in the overall suicide rates in the last two decades, while the rates went down in all the countries around them. Women in particular have much higher suicide rates. The false claim that the Supreme Court accepted without evidence that suicide rates do not go up with MAID is absolutely contradicted by the data. Suicide contagion should scare you. Do you support suicide prevention or not?
Telling my patients that you will make it easier for them to die has enraged me. They will doctor shop to find the few psychiatrists who fancy themselves defenders of autonomy at all costs, as already happens in the Benelux countries, and they will die because death was offered over full and purposeful membership in the human community. They will die because of the social suffering that this law enshrines. They will die because of lack of services. They will die because psychiatrists will now have legal permission to give up. They will die because, whether you can see it or not, you have told them they don't matter.
You have killed hope in Canada in the places it is needed most.
Okay, I will make sure to try to respect that. I will be speaking in French.
My name is Georgia Vrakas. I am a psychologist and professor, and I live with a mental illness.
To start, I would like to thank you for inviting me to testify before the Special Joint Committee on Medical Assistance in Dying.
I want to take a stand against including mental illness as the only medical condition to access medical assistance in dying. This issue is vital to me as a professional in the mental health field and as a person living with mental illness since the age of 23.
For more than 20 years, I thought I had a major depressive disorder. I had several episodes, which resulted in a lot of suffering and time off work. I also had suicidal thoughts.
In March 2021, I had my most recent relapse. I was discouraged and disillusioned, as I had gone through all the treatments recommended to me. The problem was that I hadn't received the correct diagnosis.
I was finally diagnosed on May 3, 2021, one year ago. I have type II bipolar disorder, a severe and persistent mental disorder. The months leading up to my diagnosis were very difficult and painful. I seriously considered suicide. I had a plan and I started to carry it out. Ultimately, I went to the emergency room.
I also talked to a worker at the Suicide Prevention Centre. She helped me hold on to life. I didn't want to die, but I wanted to stop suffering. The reason we have these types of services is to help us find hope. A promising drug treatment gave me back my confidence. Even after 20 years and several relapses, I am still standing. Not only am I alive, I plan to stay that way.
This is my personal story, but it is also the story of many others in Canada. As you know, approximately 20% of the population in Canada will experience a mental illness in their lifetime, and 90% of people who die by suicide have a mental disorder. Mental illness and suicide are public health problems that require a public health response.
Including mental illness as the sole reason for the Canadian Medical Assistance in Dying Act is a political response to a public health problem. This law reduces a societal problem to the individual level: “I'm sick, I want to stop suffering.” Mental illness is still taboo, access to mental health services is very difficult, psychiatric research is underfunded, and funding for promotion and prevention programs continues to decline.
Our governments have chosen not to invest in what we need to improve our mental health upstream or what we need to recover when we are already ill. Now they want to include people like me with mental illnesses in medical assistance in dying. This will supposedly help us die better. But we don't even have access to the minimum services that would help us live better. I'm talking about living, not surviving.
In this context, giving people like me the green light to get medical assistance in dying is a clear signal of disengagement from mental illness. It sends the message that there is no hope and that we are disposable.
Yet we invest in suicide prevention. We know that it is not death that people are looking for, but the end of suffering. We say it over and over again, suicide is not a solution. So how can we reconcile medical assistance in dying with this, knowing that 90% of people who die by suicide have a mental illness? How do we differentiate between the desire to die by medical assistance and the desire to commit suicide?
We are told that we cannot exclude mental illness as the sole reason for MAID to avoid discriminating against people living with mental illness. Yet in life we face discrimination daily, whether it is access to housing, work, a decent income or disability insurance. In my view, the argument of discrimination in the face of death cannot be considered legitimate when there is discrimination in the face of life.
MAID on the grounds of mental illness alone, in the current context, is an easy and cheaper solution to a complex problem. The solution lies in increasing promotion and prevention programs, increasing mental health services, investing in psychiatric research, investing in mental health education programs, and fighting stigma.
The last 20 years have not been easy for me in terms of mental health. The last year has been very difficult, but I am still alive.
I know that the road to recovery will be fraught with challenges, but I am slowly learning to rebuild myself.
Recovery does not mean the elimination of all symptoms or a return to life before diagnosis. It is a process of rebuilding oneself that includes, but is not limited to, mental illness.
Many of us go down this bumpy road. Rather than stopping us halfway along our journey, give us a chance and help us move forward in our recovery process and live with dignity.
The Quebec government has obviously heard us by excluding mental illness from medical assistance in dying. Will you hear us?
I want to tell you a bit about my experience. I have 30 years' experience as a full-service family doctor, during which I treated a lot of mental health, because we did not have good access to psychiatry. I have had a lot of experience with treating people with mental illness. I'm also a MAID provider and, for the last six and a half years, have assessed about 750 people for MAID, and I've provided about 430.
One of these was the one and only person who had MAID for mental illness as the sole underlying medical condition. That was E.F., who, as I'm sure all of you know, was approved by the superior court of Alberta to have MAID before I was allowed to provide it. I also have a lot of experience with our new group of patients, who we call “track two”. These are the patients whose natural death is not reasonably foreseeable and who we've been providing for since March of 2021. My own experience is about 40 assessments and 18 provisions.
In addition, I work with the Canadian Association of MAID Assessors and Providers and was the lead author for the clinical practice guidelines on assessing patients with dementia and with chronic complex conditions. I am also a MAID researcher and have published a number of articles on MAID in Canada.
One of those, for example, was on suicide versus MAID. We spoke with providers and the general public and people who we knew had a great deal of experience with suicide—namely, a very vulnerable population, the kind that Dr. Maher was talking about. They all were very clear that suicide and MAID were completely different. The differences they talked about—and again, this is a wide variety of people—were that MAID meant that people could be with their family and that having assistance wasn't illegal. They didn't have to be secretive. They could be open and with family. For example, E.F. arrived in Vancouver with 10 family members surrounding her to support her through her last minutes.
I want to tell you a bit more about track two patients, because my research team did a research project on the first six months of track two patients and the experience that MAID assessors and providers had. We got detailed information about 53 track two patient assessments. In 67.3% of these, the main challenge was the concurrent mental illness, and this is my personal experience as well. What I'm saying is that we have already had a lot of experience now at assessing and providing or not providing medical assistance in dying for people who have concurrent mental illness, not sole mental illness.
I want to tell you that when I assess somebody who has unbearable suffering from a grievous and irremediable condition that includes mental illness and I tell them that they are eligible under our law, you should see the smile that comes across their faces: They've been listened to and their suffering has been acknowledged in a way that often nobody else has really acknowledged, which is that their suffering is unbearable, it's unrelenting and they envision the rest of their lives with more of it.
How do I, as an assessor, say that it's irremediable?
They have had one treatment after another, after another, by different psychiatrists, different psych hospitals, and again, I'm extrapolating my patients who have both physical and mental illnesses, but that's my experience, of course, except for that one, who was E.F.
Certainly, the Quebec legislation that was just tabled got it right when they said that you can't determine whether psychiatric disease is irremediable. You can't, and the paradox here is that I'm representing 80 psychiatrists in Ontario who do subspecialist work. We see only the sickest people who are people who have been treated for the longest time, suffering terribly, and we're part of a group of 200 subspecialists in Canada.
We do a different type of work. We see only the sickest, and the paradox here that a lot of people just don't seem to get, and it's incredibly frustrating for me, is that the longer someone has been sick, the easier it becomes to treat them because with psychiatric disorders we have, as treatment options, literally hundreds of medication combinations. There is no exhausting treatment possibilities like there is with a terminal cancer where this chemo no longer works. I literally have hundreds of combinations, and when people have tried things, it helps narrow down what will work over time.
It's the work of time. I'm going to use an analogy here. I worked in pediatric oncology for many years. When a child was diagnosed with leukemia and had to start a two-year chemotherapy protocol where they were vomiting and ill for that two years, come the one-year mark, we had kids who didn't want to keep going.
What this law is offering people is an opportunity to stop because the healing is hard and long, but recovery is always possible. I've surveyed my colleagues on this. We've talked about this. We have yet to find a case where treatment and recovery were not possible. The challenge is that 70% of all people with mental illness in Canada stop taking their medication or they don't want to continue treatment because of suffering. What you are saying is to give up before the remedy is provided, give up before the healing is possible, and it's done under this guise that we have to relieve their immediate and horrible suffering—poor them.
If you did that with dying children, where would you be? Right now you're offering to do it with dying adults and these are neurodegenerative diseases. The longer you wait, the harder it becomes to treat, but it doesn't mean they are not treatable.
Let me give you numbers. My teams in Ontario treat the 7,000 sickest. We have 6,000 on our wait-list waiting up to five years. I would like to know, have any of you had a serious illness where you've had to wait five years for treatment? This is stigmatization entrenched in our system.
Right. In every other case, we're looking at future treatments that don't work. What the panel said was that we look at past treatments that didn't work, but that's helpful and critical information for guiding next steps.
Let me quote a line from the panel that I thought was remarkably apropos your question.
This is from the Gupta report: “There is limited knowledge about the long-term prognosis for many conditions, and it is difficult, if not impossible, for clinicians to make accurate predictions about the future for an individual patient.” They said it in their report—they said it right in their report—and then they add that it's an ethical decision. Unlike every other case of MAID in in Canada, where you're trying to gauge the clinical reality of whether treatment will work, they say it's an “ethical choice”. It's in there as well.
This is astonishing to me. This report is astonishing in terms of its abrogation of responsibility for us, as psychiatrists and clinicians, to treat the sickest and most vulnerable. I literally defy anyone...and Dr. Kutcher, I'm going to single you out.
You said that all psychiatrists in Canada who object to MAID for mental illness are selfish and paternalistic. I'm not sure what purpose that comment served, but I defy literally any psychiatrist to say that this particular patient has an irremediable illness, because you can't. I have patients who get better after five years, after 10 years and after 15 years. You cannot do it. It's guesswork. If you're okay with guesswork, if you're okay with playing the odds, or if your position is let's respect autonomy at all costs—if someone wants to die, they can die—call it what it is. It's facilitated suicide.
I had a bit of a glitch with all my technical stuff, and I wasn't able to hear fully the ACT group. However, I was listening to Dr. Maher answer this particular question.
You make the point, Dr. Maher, that what the expert panel said was that they were looking at what treatment has been done, but not what is possible in the future. You then equate that to [Technical difficulty—Editor], if we look at it from the patient's perspective, that what for the patient is intolerable and irremediable and what they refuse to continue to put up with, is not important. It is always about what the physician treating them desires.
I don't believe that this is what this is about. I think we heard from Dr. Wiebe about the chronicity of people who have had it and don't want to try anymore. We see that in physical decisions as well, with physical ailments, where people say, “I don't want the chemotherapy anymore. I don't want to to do this anymore.”
I'd like to ask what makes it different for a patient who has a mental problem. That is a real problem. We shouldn't put it into a category that says, because a patient has a mental problem, they do not have the ability to decide for themselves in many instances.
Can you answer me whether it is about what the doctor should be doing, or is it about what the patient requires?
I thank all the witnesses for their enlightening testimony.
I will address Professor Vrakas first.
I am glad that people can advocate for better living conditions and better investment in mental health, as everyone recognizes that major investments must be made to improve accessibility to care. This has been established by the Council of Canadian Academies and by the expert panel report.
I have heard your argument and I think it needs to be taken into account, and the same goes for Professor Maher's heartfelt plea. We have heard you loud and clear.
For my part, I am not a psychiatrist. I am an MP, and I certainly don't pretend to be an ethicist. Having said that, I question what is in the expert report. This report has already been quoted and I will quote it again:
In considering MAID requests for persons who have mental disorders, it must be recognized that thoughts, plans and actions to bring about one's death may also be a symptom of the very condition which is the basis for a request for MAID.
The expert report does not deny this. It states that mental disorders induce a desire to die and that the assessor must pay close attention. The report states:
In any situation where suicidality is a concern, the clinician must adopt three complementary perspectives: consider a person's capacity to give informed consent or refusal of care, determine whether suicide prevention interventions—including involuntary ones—should be activated, and offer other types of interventions which may be helpful to the person.
Does it reassure you that the report specifies we need to be careful of this aspect? It seems that this is limited to mental disorders. Suicidal tendencies do not manifest in all cases of mental illness. Later in the report, it says that when someone is in crisis, their MAID application will not be granted.
Don't you think this report indicates that precautions should be taken?
Thank you very much, Madam Chair.
I thank all three witnesses for being here.
Professor Vrakas, thank you very much for your honesty, sincerity and candour. It’s very moving.
I will ask a question, which I invite all three witnesses to answer in the five or six minutes that I have. I have a question that is troubling me. I came here with no preconceptions. I’m listening and trying to learn.
Ms. Vrakas, you said in your testimony that you did not want to die, but to stop suffering. I am under the impression that this is the case for many people who have physical illnesses and are suffering. They don’t necessarily want to die, they want to stop suffering. How can I, as a legislator, differentiate between the right of someone who is suffering physically and the right of someone who is suffering from a mental health problem? I want them both to have equal rights.
Mr. Maher, you said there was no discriminating between the two, but why would I give a right to someone who has irremediable physical suffering and not give the same right to someone who has mental suffering? I know that the issue of irremediability is very sensitive.
Ms. Vrakas, you could go first, and Mr. Maher and Ms. Wiebe can respond afterwards.
A very short answer to the question is that the main difference is that we're talking about treatable brain diseases, so if it's treatable, why are you offering death?
To the second point about suffering, when Dr. Fry asked the question, she was setting me up to sound like I'm paternalistic or that my wishes would supersede the patient's. In fact, the patient comes to me because of suffering. They come to me because they believe I have expertise and knowledge and the ability, with my team, to relieve that suffering. Why would I offer death instead of doing exactly what they're asking from me in the first place? They have crossed my doorstep seeking help, seeking relief from suffering, and I'm telling you I can offer it. I'm telling you that teams can offer it. I'm telling you that we only have one in three Canadians who have accessed mental health care in Canada and you're offering death instead of treatment.
Treat everybody and then let's have this discussion, but to offer them death and say, “Oh, these people have had all kinds of treatments”, I have patients referred to me all the time from psychiatrists who have said that they're never going to get better, and they get better because of subspecialist care. It's subspecialist care. If you have a particular type of tumour, you're not having your family doctor treating it. You're going to a specialist in that type of cancer. It's true in psychiatry as well. You have this false narrative going on here about how it's all equal and all psychiatrists are equal and all diseases are equal.
Talk about the treatment of resistant diseases. Talk about the people whose suffering has lasted for a long time and answer this question: What do they want? They want relief from suffering. I would tell you honestly—
I see physical and mental illness and suffering very similarly. People come to me sometimes and say exactly what you said, Dr. Vrakas, that they don't want to die but they want to stop suffering.
The question is this: Have they been offered the treatments that might relieve their suffering, and did it work enough for them? For example, if I had a subspecialist like you, Dr. Maher, and I told my patient there was a five-year waiting list for the specialist in their area and asked them whether they were willing to continue suffering for the five years, and they said they weren't, then I would say that was irremediable.
The issue with relieving suffering is so similar in many kinds of situations. Most of the suffering that people talk about is not pain but lack of ability to have a normal life. That's true of people with mental illness as well as those with physical illness, so I don't see a big difference. Have they been offered the right treatment? Can they be offered it? We talked about—
My question is for Dr. Maher, but Ms. Vrakas could answer it as well.
Dr. Maher, I don’t know if you fully answered Dr. Fry’s question. I feel like there were bits and pieces missing.
In the case of a physical illness, if specialists are trying to come up with all sorts of drugs and treatments, complex or not, to bring a person relief, it’s called overtreatment. In the case of mental illness, does this concept also exist?
Do we sometimes not offer MAID, hoping that the individual will one day get better if we put them on several treatments, experimental or not?
If you're asking me whether we try things without purpose, or let's see if it works because we have nothing to lose, the answer is no. I never get to that point. I have standard treatments that work, and it takes a long time to get there. The process of healing is slow. If you are asking me whether I think people should try experimental treatments, to me that's a matter of subjective choice. I'm not pressuring anyone to do anything. I'm offering standard treatments, and the standard treatments work.
It's an astonishing thing to me that if the treatment isn't available, and Dr. Wiebe is saying you can't get to see someone.... I'm wondering whether any of you would say “I'm going to die because I can't get the right care”, or are we people in a position of privilege, where we say, “I'm going to go to the States, or I'm going to pay for it somewhere else”? It's actually been said out loud, we'll let people die. We've seen in the news: Let people die because they can't get an apartment. Irremediability, on my understanding of the Supreme Court ruling and subsequent legislation, had nothing to do with psychosocial resources. We were talking about diseases. These were medical diseases—brain diseases we're talking about now—where we couldn't medically treat them.
Boy, has the barn door been opened wide here if that counts as irremediable. I'm going to cite this as a specific example of my great fear of the abuses that are going to follow with this legislation, because there's no oversight. There's no requirement that there be prospective judgment of what the doctors and nurse practitioners are doing. If Dr. Wiebe is going to let someone die because they can't get a treatment that will help them, then I'm frankly just shocked. That is not what this law is about, nor should it be. If we as a Canadian society are willing to let people die over apartments, I'm frankly just disgusted. Forgive my passion here, but you're parliamentarians with a duty to preserve life.
Thank you, Mr. Chair.
I thank all the witnesses for their testimony, but I only have three minutes.
My question is for professor Vrakas.
Professor Vrakas, you talked about a crisis, someone going to the emergency room. Obviously, the intervention has to be quick. In other words, there is no time to lose. However, when we talk about accessibility of medical assistance in dying, is there not room for nuance?
Protective measures are already in the Act, including the period of at least 90 days, which is still quite long. Then there are steps. Assessments need to be done by two people, not just one. According to the working group’s recommendations, this second person should specialize in mental illness. There is also a need for those doing the assessment to have specialized training in this field and to work in conjunction with the treatment team.
Don’t you think this system is very different from the reaction to a crisis?
During an assessment, it takes several months to come to the conclusion that the patient is eligible for medical assistance in dying. In your case, you said you wanted to die, but that does not mean you would have been allowed to access medical assistance to die.
There's a good chance I would have been eligible since treatment had been only somewhat effective for 20 years and I was still experiencing bouts of depression.
They are two different things. A crisis is fleeting. You have a crisis and you get help. When you have a mental illness, you live with the suffering and problems over a long period of time. During that time, you can seek help and you can find out whether you are eligible for MAID. The real problem is access to treatment.
I am a psychologist, and I can't choose to turn away clients. I just received an email from the government asking me to make my services available to the public. Services are desperately needed, and those who are suffering don't have access to the services they need.
No matter how it is structured and no matter what protocols are in place to regulate MAID, it doesn't change the situation. People like me and others are being told that they can access MAID, that they can die, that they can have help to die, and that death is an option. We are told that suicide is not a solution, but that assisted dying is. That sends the message that our situation is hopeless.
When that is presented as an option, the person may choose it because, morally and socially, it is seen as an acceptable solution. Whatever protocols are put in place, it won't change things. That thinking will become mainstream.
I've known Mona for many years. We're colleagues. She's a smart, wise psychiatrist, but I will say she has information but not knowledge, and she is the first to say out loud that she doesn't work with the sickest people. She has also publicly said that she believes that people should have to have at least 10 years of treatment before you can even start to think about whether someone has irremediable illness.
Apropos the myth that Senator Wallin just threw out there that we're trying to force treatment on anybody, I'm sure that Dr. Gupta would agree we're not forcing treatment on any capable patient. They keep coming because they want help and relief from their suffering. At the risk of sounding insensitive, no one is keeping them from killing themselves. I say this with literally a broken heart because of the number of my patients who have carefully and thoughtfully planned their own deaths. As for this myth that it's tragic and horrible, people keep saying.... It is tragic and horrible in mental illness. We have one study from Switzerland in which 40% of the families report having PTSD or depression after supporting a loved one who's dying.
Dr. Gupta's report brings together plausible evidence but in the same breath says that we can't identify who's irremediable, the key legal criterion we're talking about here. It talks about your duty to review and also says that this is an ethical decision, not a clinical decision. I'm frankly stunned that Dr. Gupta has gone there. I'm also wondering why two people resigned from that panel. I would like to know that story. What you have is a number of very sensitive thoughtful statements but not a single safeguard. In the Benelux countries, you at least have to have tried standard treatment before you get euthanasia. In Canada—
I have just a few comments for the benefit of our new witnesses.
Before speaking, please wait until I recognize you by name. As a reminder, all comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly. Interpretation in this video conference will work as it does for in-person committee meetings. You have the choice at the bottom of your screen of floor, English or French. When you are not speaking, please keep your microphone on mute.
With that, I would like to welcome our witnesses for this panel, who are here to discuss whether to permit medical assistance in dying for mental illnesses or disorders in Canada. First, there's Dr. Alison Freeland, chair of the board of directors and co-chair of the MAID working group at the Canadian Psychiatric Association. As individuals, we have Mr. Mark Sinyor and Dr. Tyler Black. Thank you for joining us today for the second panel.
We'll begin with opening remarks by Mr. Sinyor, followed by Dr. Freeland and Dr. Black.
Mr. Sinyor, you have the floor for five minutes.
Good afternoon, committee members. It's an honour to be with you today. My name is Mark Sinyor. I'm an associate professor of psychiatry at the University of Toronto and a psychiatrist at Sunnybrook Health Sciences Centre who specializes in the treatment of adults with complex mood and anxiety disorders.
My research is focused on suicide prevention. I'm a former vice-president of the board of the Canadian Association for Suicide Prevention, lead author on the Canadian guidelines for responsible media reporting about suicide, a steering group member of the International COVID-19 Suicide Prevention Research Collaboration and I was recently asked to coordinate the International Association for Suicide Prevention's efforts to create a regional suicide prevention network across the 35 countries in the Americas.
I should note that I am not involved in MAID assessment or provision. I am also not a conscientious objector to MAID. To be transparent, my professional agendas, both in general and in these deliberations, are to do my best to help contribute to a Canadian society with fewer suicides and to protect psychiatry as an evidence-based science.
Given that I only have a few minutes, I will focus my remarks on what ought to be the overriding issue in your deliberations. As highlighted in the expert panel report, I and some of my colleagues have argued that, like any other medical procedure, physician-assisted death for sole mental illness should be permitted only if there is evidence that the benefits outweigh the harms. In their recently tabled report, the expert panel noted that they “considered this possibility but did not arrive at this conclusion.”
The imperative to do no harm has been a foundational principle of medicine for thousands of years and underpins the modern principles of evidence-based medicine, which call for us to undertake scientific evaluation of the benefits and harms of our treatments to determine whether delivering them is ethical. If, as a country, we're going to reject these ideas, first, we should be aware that we're doing so and, second, we ought to have a compelling reason.
In short, we are essentially missing all of the necessary scientific evidence to evaluate the safety of physician-assisted death for mental illness. If I had more time, I could list many examples, but let me focus on the fact that there is absolutely no research on the reliability of physician predictions of the irremediability of illness or suffering in psychiatric conditions. To my knowledge, there is not a single study.
Advocates for the practice are suggesting that we have safeguards, because the practice carries many inherent dangers. This is the entire reason for safeguards. We do not propose safeguards for practices that are already safe, but the degree to which any proposed safeguards actually fix that problem is entirely unquantified. No one has provided you with those numbers because there has been absolutely no research and they don't exist. As a result, if this goes forward, MAID assessors will have no idea how often they are wrong when they make a determination of eligibility in the context of physician-assisted death for sole mental illness. They could be making an error 2% of the time or 95% of the time. That information should be at the forefront of this discussion, yet it is absent altogether.
There are many other examples of evidence about serious harms that are simply missing, such as rigorous study of the impact on suicide and its prevention. Nothing in life or in medicine is certain. All of our treatments carry potential benefits and potential harms. In medicine, we deal in probabilities. Doctors help patients make decisions in cancer treatment, for example, by sharing that chemotherapy might result in survival 90% of the time or only 10% of the time. In neither case do we know the outcome for certain, but those numbers are crucial in helping patients make informed decisions. In physician-assisted death for sole mental illness, we have no numbers at all. Neither we nor our patients would have any idea how often our judgments of irremediability are simply wrong. This is completely different from MAID applied for end-of-life situations or for progressive and incurable neurological illnesses, where clinical prediction of irremediability is based in evidence.
In the context of physician-assisted death for sole mental illness, life or death decisions will be made based on hunches and guesswork that could be wildly inaccurate. The uncertainties and potential for mistakes in mental illness are enormous and, therefore, the ethical imperative to study harms in advance of legislation is accordingly immense.
What is so disconcerting here is that we could conduct the necessary studies. We demand evidence on benefits and harms before legalizing natural health products, new medicines and vaccines. Why skip that step in such a profound deliberation as the one you are engaged in now? I would argue that we owe it to our fellow Canadians with mental illness to have the necessary scientific information in hand before making such a consequential decision.
Thank you. I wish health and well-being to all during the pandemic.
Thank you for the opportunity to be here today. My name is Alison Freeland. I am a psychiatrist, and I'm here in my capacity as chair of the board of directors of the Canadian Psychiatric Association and co-chair of the CPA's MAID working group.
Today I will focus my remarks on medical assistance in dying as it pertains to requests on the sole basis of a mental disorder to supplement the CPA's brief that was submitted to this committee a few weeks ago.
The CPA has not taken a position on whether MAID should be available where mental illness is the sole underlying medical condition. However, we do believe that any new legislation must protect the rights and choices of all vulnerable Canadians without unduly stigmatizing and discriminating against those with mental disorders where eligibility requirements are determined to be met.
In considering safeguards, the CPA discussion paper looked at the issue of capacity. A mental disorder does not in and of itself imply incapacity in any domain of decision-making, but when active, various forms of mental illness can impair decision-making and capacity. Psychiatrists have specialized training and expertise in the assessment, diagnosis and treatment of mental illnesses, including the assessment of decisional capacity as well as the durability, stability and coherence of a person's expressed will and preferences. Psychiatrists are well versed in taking into consideration any external constraints or internal psychopathology that may impact these issues.
Inequities of service provision and funding are an issue for all types of conditions. This is an area that is particularly problematic for people living with mental illness. Such inequities are further exacerbated for people who live in rural or remote areas. Whether the illness is physical or mental, or a combination of both, equitable and timely access to evidence-based, culturally appropriate clinical services is a first and essential safeguard to ensure that people do not request MAID due to lack of available treatments, supports or services.
In the context of mental disorders, there is no generally agreed definition of incurability. Within the field of psychiatry, there are some who do not accept that any mental disorder isn't curable and will argue that there is always another treatment to be attempted. Resolution of this issue requires a pragmatic approach that balances clinical expertise and assessment of incurability with the patient's perspective and experience of their illness.
Socio-economic determinants of health, which play a key role in each person's experience of suffering and adaptability to mental illness, are important to consider. If a patient refuses recommended treatment for their disorder without good reason, weighing both the potential benefits and burdens, they are unlikely to have met the eligibility criterion for incurable.
Vulnerability is not limited to those with mental illnesses. Many people with non-psychiatric illnesses are also vulnerable because of such psychosocial circumstances as isolation or poverty, cognitive distortions and demoralization due to failed treatment attempts or difficulty in adjusting to life with their illness. The trajectory of physical illness can be as unpredictable as that of mental illness. Loss of hope can occur, as can spontaneous remission. Predicting treatment outcomes is as much a challenge for psychiatry as it is for the rest of medicine.
Both acute and chronic suicidal ideation must be considered and evaluated to make a best determination as to whether the patient's wish to end their suffering represents a realistic appraisal of the situation, rather than a potentially treatable symptom of their mental illness. A request for MAID should be considered and sustained, and not be the result of a transient or impulsive wish. This is particularly important for persons with non-terminal conditions, such as a mental disorder where illness maybe more episodic in nature.
Therefore, separate from any MAID eligibility assessment, it is essential that at least one independent psychiatrist completes a comprehensive clinical assessment to validate whether the patient has received an accurate diagnosis and access to evidence-based mental health assessment, treatment and supports for an adequate period of time based on generally accepted standards of care.
Thank you very much. I'd be happy to try to answer your questions.
Thank you for the opportunity to provide my perspective.
I'm a physician with 14 years of tertiary experience in emergency psychiatry involving suicidality, and I'm a researcher, teacher and expert in suicide and suicidology.
It's really important to note that what most people think of as suicide is far different from most experiences of MAID. I've submitted a brief regarding many of the myths comparing suicide to MAID, and I trust that it's been helpful to the committee. I'd like to draw special attention to three of the points that I made.
First, motivations in MAID and suicide are rarely the same. In suicide, it's very rare to have a combination of fatalistic motivation, which is a controlled response to a perceived stress, an agreed-upon lack of remedy and a rational calculation of the likelihood of change, whereas in MAID this is almost always the case. In the literature, psychiatrists generally agree with the patient's unbearable suffering and futility of treatment in psychiatric MAID cases in the countries where this has been studied.
Second, the wish to die is not indicative of a mental illness. While depression does include suicidality as one of its nine criteria, the presence of a serious mental health diagnosis is absent in 40% to 50% of all who die by suicide. Many who experience suicidal thinking do not have a diagnosable mental illness, and the vast majority do not die by suicide.
Third, capacity assessments are a core part of psychiatric training. This is probably the most achievable and least controversial aspect of these discussions and not an area of significant controversy in psychiatry.
To the larger complex question regarding psychiatric MAID, I'm comforted by an approach that helps me in my clinical life. You see, most of my patients are sent to me as a tertiary psychiatrist when other psychiatrists and doctors are seeking care and expertise for a complicated case. Where other physicians who deal with primary presentations follow guidelines or algorithms, I rarely have an algorithm to follow. In fact, the book of algorithms for my line of work would be minuscule.
Rarely do I ever have a perfect answer. For this, I both teach and practise science-based medicine and principle-guided medicine. For science-based medicine, we use the best evidence we have at the time. We apply plausibility in expertise and recognize the importance of updating our information as new, excellent information comes to light.
In this regard, there are decades of experience of MAID in some countries and some with psychiatric MAID, and it suggests that it's well practised, well accepted and represents only a small fraction of all MAID deaths, 1% to 2%. Given the number of people with suicidal thinking, there is simply no credible foundation for the fear that allowing MAID for psychiatric conditions would create a flood of deaths in Canada.
One study estimated suicidal thinking as an 8% lifetime risk for adults in the Netherlands, yet 65 or 0.0004% of adults in the Netherlands have died of MAID in any given year due to psychiatric reasons.
Adding the procedures that should be in place for MAID, the plausibility of a hasty, poorly thought out conclusion regarding MAID is drastically reduced. I've also submitted evidence regarding a review of studies of psychiatric MAID in various countries to the committee.
For principle-guided medicine, one uses a set of principles to dictate decision-making. There are many principles that I consider when it comes to psychiatric MAID. First, we must respect the autonomy of our patients, especially when we have determined that they have the capacity to make decisions for themselves.
Second, we must be cognizant of systemic racism, systemic ableism and lack of access to mental health care in Canada. It should never be that someone chooses MAID due to a system that inflicts racism or ableism on that person or limits their ability to access quality mental health care.
Third, we must not discriminate against people with mental illnesses nor discriminate against those with psychological suffering.
Fourth, not all conditions respond to treatment. No treatment in psychiatry has a 100% cure rate, and psychiatry has been loathsomely slow compared with other specialties to the medical notion that some people do not, for a variety of reasons known and unknown, respond positively to treatment. For some, treatment is a miserable experience with no benefits.
Fifth, psychiatry has a long legacy of paternalism, and decisions must be centred in a place where the expertise of physicians and those with lived experience overlap. Finally, only a physician's professional opinions, not their personal beliefs, should exert influence on a patient in their health care decision-making.
I can imagine a system in Canada that honours the best science and principles we have regarding this issue and, for that reason, I'm cautiously but generally supportive.
I think there are a few key things. The first is that the legislation doesn't only talk about incurable illness, but also incurable and intolerable suffering. The idea of incurable and intolerable suffering doesn't actually have a scientific definition. There was an article in the Canadian Medical Association Journal just a month ago in which there were calls for a scientific definition for that, which would really be a precursor of being able to study it. It's important to alert the committee that the concept we're trying to treat doesn't even have a scientific definition. That's part of the reason there have been no studies of it.
I think there's a whole host of other things that we need to look into beyond.... There's not only the irremediability of psychiatric disorders but also the irremediability of psychiatric suffering. While I agree with the other witnesses that there are psychiatric illnesses for which we know we can't cure the underlying illness, that's actually somewhat different from the idea of whether we can provide a treatment that may be able to alleviate the suffering that corresponds to that illness. To my knowledge, that has never been the focus of a single psychiatric study or any kind of study.
The large rest of studies that would be necessary are those related to suicide and suicide prevention. We just heard correctly, for example, that there's this question about whether MAID is suicide or not. Some people say it's exactly the same thing. Some people say it's totally different. The reality is probably that it's something in between. Obviously, in the case of mental illness, we have to be concerned that there may be substantial overlap. Trying to quantify the degree to which that overlap exists and the degree to which messaging....
I'll just say that my research mainly focuses these days on public messaging. We find that when you message across society that when you're having difficulty and struggling with mental illness, you can go seek treatment and get help, we see fewer suicides across the population. When you see media reporting about the idea that people will take their own lives when they're in difficulty in life, we see an increase in suicides. The degree to which that media reporting and this sort of cultural change that we have may have an influence is something worth studying, as is the impact on the physician-patient relationship and how people view psychiatry.
I would say the last thing that probably would be worth studying is an economic analysis of whether there are perverse disincentives. Of course, if this goes forward you would want any money that's saved through MAID to then be funnelled back into the mental health system. There is the possibility, of course, that there's a perverse disincentive to invest because if you don't invest, the more people have what appears to be irremediable illness and they die through MAID. Then our health care system just gets worse, which I think we can all agree would be a complete disaster.
All of that research would be helpful to know before going forward.
Thank you for the question.
As I understand it, the question is whether, if we spend more time focused on addressing socio-economic determinants and their impact on people's experience of their health issues, we would avoid having to take on MAID as a solution.
You know, I think as part of thinking about treatment, and certainly again from a CPA perspective, the idea of biopsychosocial interventions to treat mental illness is really important and part of evidence-based care. We think about assessing and treating the biological symptoms of illness using a variety of measures and treatments, but in addition think about psychological measures and consider the social circumstances in which somebody lives.
When somebody has appropriate access to a treatment team that's able to provide biopsychosocial interventions, that should go a long way to trying to ensure that we are providing people with the best kind of care, which is what we would all want to do in a situation with somebody who has either physical or mental health issues and who is thinking about ending their life because of the nature of their experiences.
As I said, one of the first and primary safeguards is to ensure that people have the right access to treatment. That being said, there may still be circumstances in which somebody has experienced something in their life or they're in a unique circumstance where, regardless of what a treatment team can do, it doesn't specifically meet that patient's individual needs. If that is considered to be the only way to try to mitigate MAID, I don't believe that's something that will happen. I think that's why we have to think about those things in a very fulsome way and understand them as part of the safeguards and do the best we can to help steer people in a direction of hope and recovery, and then think about what safeguards we need to have in place to ensure people are not going too quickly to explore MAID as an option.
Thank you very much, Dr. Freeland.
Now, I'm going to ask a simple question, and if there's enough time, I'd like all three witnesses to answer.
Something that has come up a number of times in our discussion is whether the experts and science are able to make a clear distinction between someone who is suicidal and someone whose suffering would exclude them from eligibility for MAID. That strikes me as a basic question.
Ms. Freeland, are you able to say to a patient, a person, that they are suicidal or that they are living with suffering that excludes them from MAID? Is it possible to make that determination reasonably but, above all, scientifically?
Dr. Freeland, thank you very much for tackling this issue of who decides whether the suffering is intolerable.
If I understand correctly, your perspective is that a competent person's own experience of suffering dictates what they choose to do. A psychiatrist needs to offer all options to the patient, but it's the person, not the psychiatrist, who decides what will happen, if the person is competent.
There have been concerns raised that some psychiatrists will never accept that a patient's suffering is not remediable. In such a situation, where the psychiatrist feels that the patient's suffering is not irremediable and wants the patient to keep going and trying but the patient says that enough is enough, what happens in that relationship? How should they proceed together?
I think in those kinds of challenging situations....
Maybe I would just preface this by saying that, ideally, these are shared decisions because the patient is listening to the psychiatrist's perspective and input, and we are there to think about hope and recovery. At the same time, we have to listen to a competent patient's perspective and what they want to come up with a decision that forges a path forward for the patient that they find appropriate for them.
Where a patient feels that they perhaps are not getting what they feel they might need from a practitioner, I think the solution would be similar to what patients do when they experience that in many different medical predicaments. There are opportunities to reach out, request a second opinion, ask for a re-evaluation or maybe come to a shared decision around what next steps should be taken, and then maybe have a second opinion.
I think there are different alternatives, but ideally these are transparent, informed conversations between two people who care about somebody's outcome, treatment and care.
Thank you to all of the witnesses. We will be getting ready for our next session, but I wanted to thank you on behalf of all of the committee members for your expert testimony today, for being very candid with us, for your opening comments and for answering our questions on what is a challenging file that we take very seriously.
Your input as experts is very highly valued. Thank you very much for taking the time in your busy schedules to be with us today.
With that, we'll suspend this panel. As you know, members, we have to provide a break at this point for our interpreters and others, so we will resume with testimony from Dr. Gupta at 4:30 this afternoon.
Thank you all. This meeting is temporarily suspended.
Welcome back, colleagues.
We now have a very special panel for one and a half hours. We have the chair of the expert panel on MAID and mental illness, Dr. Mona Gupta. I'm not sure if there are others accompanying her, but I see her online.
This panel will be one and a half hours in length. Therefore, the format will be slightly different from our usual format. Following Dr. Gupta's opening statement of five minutes.... Actually, I misspoke. We will be going back to our original round of questions. We have never been able to get to round two, as you know. We'll be doing round one with MPs and senators, and then the second round with three minutes for both Conservatives and Liberals and two minutes for Bloc Québécois and NDP. We have never gotten to the second round, but because we have one and a half hours, we'll be able to do the full order.
Dr. Gupta, we welcome you and the expertise that you bring to the table. You have five minutes to address our committee. The floor is yours.
Thank you, Madam Chair.
I am pleased to appear before you to represent the Expert Panel for MAID and Mental Illness, which was created under Bill and whose final report was tabled in Parliament on May 13, 2022.
I am a psychiatrist and regular researcher in philosophy and ethics of psychiatry at the Centre Hospitalier de l’Université de Montréal. In my clinical practice, I work in the area of consultation-liaison psychiatry, the subspecialty devoted to the psychiatric care of the medically ill. I have also been involved in cases of persons requesting MAID, primarily as a psychiatric consultant and sometimes as an assessor.
In these opening remarks, I will provide a brief overview of the reasoning behind the panel’s recommendations. I can elaborate upon this reasoning in more detail during the discussion period as needed.
Just a quick note about terms: although our mandate used the expression “mental illness”, we chose to use the term “mental disorder” since this is standard terminology in medicine. Hereafter, I will use the expression “mental disorder”.
Our mandate was to make recommendations for safeguards, protocols and guidance for MAID requests made by persons with mental disorders, not to debate whether such persons should be permitted to have access. Nevertheless, we took the concerns raised by those who are opposed to this practice very seriously. By these concerns, which are addressed in the report, I mean incurability of a medical condition, irreversibility of decline, capacity, suicidality and vulnerability.
As we undertook our work, our first observation was that people with mental disorders are requesting and accessing MAID now. This group includes a range of requesters, from people whose mental disorder is stable, to those whose psychiatric and physical problems are active and together motivate the request for MAID, all the way to those whose requests are largely motivated by their mental disorder but who happen to have another qualifying condition. These requesters may have long histories of suicidality. There may be questions about their decision-making capacity. They may also be in situations of structural vulnerability.
A second and related observation the panel made is that there are people requesting and accessing MAID now whose medical conditions are difficult to assess with respect to incurability and irreversibility in decline—for example, some requesters with chronic pain.
Based on these observations, the panel concluded that there is no single characteristical problem that attaches to all people with mental disorders and only people with mental disorders. “Mental disorders” is merely an imprecise proxy for these concerns. If the hope is that by excluding people with mental disorders as a sole underlying medical condition from accessing MAID we can avoid having to deal with these difficult issues, clinical experience with MAID shows us that this is not the case. We are already facing these problems in practice. That is why the panel's approach is to try to address these problems head-on.
When we looked carefully at the concerns raised about MAID for mental disorders, we found that they were clinical in nature, meaning that the difficulties arise when clinicians have to apply legal terms to MAID assessments—for example, interpreting the word “incurability” for a particular medical condition or assessing chronic suicidality.
What seems to be required to address these concerns is greater elaboration about the applicability of the eligibility criteria and the best approaches to adopt in assessing specific challenging issues in clinical practice. The panel has tried to provide this elaboration and specification in our recommendations.
This process of elaborating and specifying has also allowed the panel to clarify that, in order for a mental disorder to be a grievous and irremediable medical condition in the sense of the Criminal Code, it must be of long standing and the person must have had an extensive history of treatment and social supports. MAID is not intended for people in crisis or those who have not had access to health and social resources.
With that, I will stop. I would be very glad to continue on in discussion with you.
I am not aware of studies about predicting irremediability. Irremediability isn't a clinical term; it's a legal term. One of the things the panel tried to do was to give it some clinical flesh, if you will, and put it in terms that clinicians can understand.
I'm going to just modify your question slightly, if you'll let me, and say there are studies about predicting, for example, treatment resistance. That's a term that would be more familiar in psychiatry, for example, amongst people with a certain condition who have had certain kinds of treatments. For example, when we do research on treatment resistance, we certainly identify subjects to enrol in those studies, so you could say, yes, the researchers—clinicians often—who recruit patients for those studies come to agreement on who are treatment-resistant patients and who are not.
Thank you, Madam Chair.
Welcome, Ms. Gupta.
Thank you for providing all that information, as chair of the Expert Panel on MAID and Mental Illness.
The people before you today are members and senators. At the end of the day, we are lawmakers who don't have all of your psychiatric expertise.
Our focus is whether to permit medical assistance in dying when mental illness is the sole underlying condition. I don't know what the split among psychiatrists is on the issue, but we have heard arguments at both ends of the spectrum from members of the profession.
That said, there seems to be a consensus within the profession that it is indeed possible to distinguish between a person who has suicidal tendencies and a person who does not, even if that person is suffering solely from mental illness. Do I have that right?
That is interesting. As you have already heard from the other witnesses, there is debate in the scientific documentation as to whether the desire for MAID is the same thing as being suicidal. Some say it is, others say it is not. In the report, we noted this difference of opinion in the scientific documentation. Setting aside my role as panel chair, I would like to talk about my own work as a researcher in our research group. I will not analyze the question that way, that is, by trying to determine whether one can make a distinction between these two states of mind. I will ask instead if we know how to respond when we deem someone at risk for suicide and when that is not the case.
To answer your question, I will draw on other areas of medicine. For instance, some patients make choices that will certainly lead to the end of their lives, such as stopping treatment. Should all those patients be considered suicidal, hospitalized against their wishes, and forced to continue their treatment? In some cases yes, in others no. On which principles and practices should we rely in making those decisions?
Returning to my role as panel chair, we use these same principles and practices to evaluate a person requesting MAID. Should we take action, even if it is against the patient's wishes, or rather should we assess their ability to make that decision?
Your question touches on various aspects. I will try to answer it as best I can.
First of all, the panel's position is that the term “irremediable” is not a clinical term. It is a term found in the Criminal Code that is based on three sub-criteria: the incurability of the condition, advanced and irreversible decline in capability, and suffering. All of these terms have a clinical meaning. So we can try to understand these terms and define them in a way that is meaningful to clinicians and that is consistent with what we do in our practice and the treatments patients receive.
I think a large part of the debate between those who say that an illness cannot be deemed irremediable and those who say it can is the result of the fact that they use different definitions. That is why, in the report, the panel tried to offer a definition of an “incurable illness” for mental disorders that would be meaningful in a clinical context.
Of course, we know there are illnesses that we will never be able to cure. We are 100% sure of that. Yet there are many other illnesses that we know less about, especially as regards their long-term evolution. In such cases, what is the degree of certainty required? The devil is in the details. On the whole, that is our view. If we think about what an incurable condition is and draw a parallel with other chronic illnesses, we can say that the threshold is met once all the conventional treatments have been exhausted. This relates to your comment about the decision in Carter.
As Dr. Maher said earlier, we will certainly not force people who are fully competent to do things that are unacceptable to them. Equally, if I note that someone has an incurable illness, how do I proceed if the patient has not tried any treatments? How many treatments do we have to try? It depends on what the clinician and the patient have negotiated.
Thank you, Madam Chair.
Thank you for being here, Dr. Gupta.
I read your report with interest a number of times, and I would like to share my chief concern.
I thought your mandate would include the broadening or banning of MAID in cases where a mental disorder is the only medical problem involved. Why was that not part of your mandate? I understand that you worked from the assumption that this broadening was necessary, and that you sought to determine how to proceed.
If you could answer briefly, please, because I have several more questions for you. Why was that not part of your mandate? Were you surprised by that?
In the review of the act, however, we had to determine whether to apply the sunset clause or whether that option should be entirely removed. I think it would have been helpful for the expert panel on mental illness to have that discussion. As a result, Quebec cannot proceed. If it did proceed, it would probably have application problems on the ground. We shall see what happens.
According to the Canadian Psychiatric Association, and based on your report, to determine that a person with a mental disorder meets the incurability criterion, three criteria must be considered: the chronic nature of the condition, the scope of previous treatment attempts and thus the effectiveness of treatments, and the person's refusal of treatment. I assume you have to evaluate whether there have been repeated refusals or refusals that have affected the required assessment.
Some people say there are no incurable mental disorders, under any circumstances. Clearly, that is not what you are saying. Nonetheless, all patients have the right to refuse treatment. What role does that right play in your assessment of whether a person meets the incurability criterion? In the case of a patient who has refused or refuses treatment, can one conclude that the person has not done what is necessary to be cared for? In that case, would the patient not be eligible?
In some instances, it is said that a mental disorder is incurable. That also entails some suffering.
Thank you very much for your question.
If I may digress a bit, I want to broach a more clinical and technical topic.
In the case of certain paradigmatic illnesses, such as advanced cancer, when there is a clear diagnosis from a biopsy or MRI, for instance, we can get an idea of what will happen to the patient from the outset.
In the case of other illnesses, however, we cannot know how things will evolve when the diagnosis is made. It depends on the treatment the patient receives, their response to the treatment, and the side-effects, among other things. We cannot predict much without trying treatment.
That is why, in the report, we try to align the need to try treatments in order to establish that the trajectory of the illness is bleak, with the need to respect the fact that a person has already tried many treatments and has had enough. Where exactly do we draw that line? I think it will differ from one person to another. We also have to consider their general health and the circumstances in their case.
I will answer briefly, but we can come back to this.
I think it is feasible. Right now, when a person with a complex illness requests MAID, we seek the opinion of specialists.
Let me give another example, to which we can draw a parallel.
In the case of evaluations for institutional commitment, the law requires the opinion of two psychiatrists, not just one psychiatrist, regardless of whether it is during the day, during the week, or on the weekend, and we make sure that is done. Those patients are ill and are the most vulnerable. In my opinion, we can create a structure that will properly accommodate their request.
Thank you very much, Madam Joint Chair.
Dr. Gupta, thank you so very much for joining our committee today and helping guide us through some very difficult issues. I appreciate the report that we now have to refer to as we commence our study.
I've been a member of Parliament since 2015 now. I was there for the Bill and Bill debates. For me, the problem with this whole process is that it seems, with the amendments that were made by the Senate to C-7, which effectively are going to allow for mental illness as an underlying condition by March of next year, it's also a situation where we've put the cart before the horse. We're involved in this very in-depth study, but we're working with an impending deadline that is now less than a year away. You've talked a lot about the fact that we need to make sure every option is available.
Before I get to supplementary questions, though, my first question to you is this: What was it like for the expert review panel working under the knowledge that you had this deadline? Did you feel a sense of pressure? How did that inform your work, knowing that in March of next year this is now going to be a part of the Criminal Code and allowed?
Thanks so much for the question. I appreciate the opportunity to have a chance to discuss these issues with you.
I think it was Dr. Wiebe earlier today who talked about the commonality between chronic physical conditions and chronic psychiatric conditions, so I think I would start my answer there by saying that it was not so much the March 2023 legislative deadline that put pressure, because I think that we see a lot more commonality between psychiatric disorders and physical disorders, as I said in my opening remarks, which are already being structured under the track two safeguards. Our task was really to say, let's take a look at these safeguards. Are they doing the work that we want them to do in situations of mental disorder as a sole underlying medical condition?
I think the pressure is about wanting to respond in good faith to the concerns that have been raised, which we also shared and took seriously, and to produce something that would work for patients, for families and for practitioners and not just specialists in cities but people who are living in rural or remote areas, where access may be very different from in cities, and for people living in all kinds of circumstances. I think it was inherent to the exercise. That was the pressure.
In your interventions with some of my other colleagues on this committee, you were talking about our really having to make sure we have resources in there so that patients can avail themselves of every option for treatment. Certainly in previous testimony, we've heard of “groundbreaking research” that's going on with psilocybin as a potential therapeutic intervention to help guide people through mental health problems. I know it's still in its infancy.
I realize that, for future patients who are accessing MAID, there will be the safeguards in place. They will have to have an extensive history. I guess my concern is that I look around in my own community and I see so many people who are living on the street in obvious mental distress. I keep wondering—if they had had early interventions, could that have prevented them from getting to a state where it became so bad that they didn't see a way of pulling out?
I know the Government of Canada has made some commitments to a big mental health strategy, but can you maybe just talk a little bit about how much more is needed to really fill in the gaps? The last two years, especially, have really highlighted this issue in many communities like mine.
That's a really good and big question. I want to start by saying that I'm by no means an expert in the administration of mental health services or financing of mental health services.
To connect your question to the topic that we're addressing today, I think we want to be thoughtful of the fact that mental disorders are not a homogeneous group of people. There are subgroups. Quite often in the public and policy debate about MAID, we conflate people with severe conditions who have been ill for decades, who have had a lot of treatment and a lot of follow-up with people who can't get access to first-line resources during times of distress, times of personal difficulty or perhaps at the beginning of a condition when they're not that severely unwell.
I don't think that responds fully to what you're saying, but thinking about what's needed to fill the gaps has to think about these difference subgroups because I think their service needs are quite different. I know it's not popular to say, but I'm going to say it anyway. There are patients in Canada who get excellent care. I'm sure that Dr. Sinyor's patients at a tertiary-level centre in Toronto and Dr. Maher's patients get excellent care.
Part of the problem is homing in on where the deficiencies are and recognizing that it's probably not just a big mental health strategy with a big spend that's needed, but really targeted funding for very different kinds of services for different subgroups.
Thank you, Senator Martin.
We're now going to do a senator round, each for three minutes.
Just before that, Dr. Gupta, your microphone has sloped down a bit. It causes popping, so to minimize that—I know it's hard to keep it in the same place—if you could lift it up a couple of inches, that would be great.
We'll start off with Senator Mégie.
Senator Mégie, you have the floor for three minutes.
Ms. Gupta, thank you for being with us today.
I have reviewed the recommendations from the expert panel. Recommendation 16 pertains to prospective oversight, recommendation 18 to data collection, and recommendation 19 to periodic research.
In your opinion, how could the federal government go about this?
Should there be committees responsible for prospective oversight and data collection? The research would be done periodically. What would those periods be?
How could it all be coordinated?
Thank you very much for your question.
I think there are various ways of going about it. Research could be centralized at the three offices of the National Research Council of Canada. Calls for proposals could be issued for projects that are open or on specific topics.
That research could be linked to the data collected by Health Canada. In the report, we proposed that the new variables be incorporated into the current oversight system. In the Netherlands, the research is already linked with data collection. To date, the system in Canada has focused more on calls for proposals for projects that are open or on specific topics. So I think there are various ways of going about it.
We say prospective oversight, but oversight falls under provincial jurisdiction. That is how it stands for the time being. I think the federal government could play a coordination role to ensure that the provinces and territories can develop prospective oversight systems. In the report, we noted that this was a request from psychiatrists. That kind of oversight system would allow them to do their jobs well and have a broader view. It would ensure that they have done their assessments correctly, given the complexities.
Thank you for the question.
We were mindful of the fact that it wasn't our place to take on many different new mandates. At the same time, and as I tried to present in my opening remarks, our analysis took us there, because the things that people are worried about in the practice of MAID are not unique to mental disorders. We were a bit stuck and said that these things are really important but they are not just important for people with mental disorders. These recommendations are important any time you're concerned about the incurability of a condition.
This is an approach. Any time you're concerned about suicidality, here's an approach and a way to think about it. I hope that our recommendations will be considered to be useful in track two, and even in track one. Suicidality exists in track one, and questions about capacity exist in track one as well.
Thank you for the question, and, yes, that was our hope as a panel.
Specifically, it's fascinating that Senator Mégie, who is also a physician, homed in on the same three things that I'm going to ask you about right now: the national framework for protective oversight, the framework for case review, and the importance of the ministry of health adding the additional research components that you put into your report.
Would you agree that the could actually start putting those in right now?
Then second, for the other two, protective oversight and the case review, do you think it would be feasible for the federal government to convene provincial and territorial governments and the other appropriate stakeholders to start moving that ahead immediately?
Dr. Gupta, thank you for your participation, and in particular for having chaired a group that issued such an important report.
The chair of Canadian Psychiatric Association appeared just before you. You may have listened to her. In order to improve your report, she said that national standards would have to be established that would apply to all psychiatrists and other assessors taking part in the process. Psychiatrists will be taking part in the process because at least one of the two assessors has to be an expert.
Do you think it is possible to create national standards or suggestions, national parameters, that would apply, by March 2023?
That is a big question.
As you know, health care falls under provincial jurisdiction. I do not think the federal government can decide for the provinces how they should approach MAID or tell clinicians across the country how they should go about it.
That said, I think there is already a national organization, the Canadian association of MAID assessors and providers, or CAMPAP, that plays a leading role by publishing various background documents, clinical guidelines, and so forth. The association is currently conducting a project on practice standards, guidelines, and best practices for MAID.
In practice, clinicians will turn to this kind of training and documentation to be familiar with the details of what they have to do every day. Even if it were possible for the federal government to work with the provinces and magically create a national system, I do not think this is the area in which clinicians need help and directives. Rather, I think they need to know what to do, and how to assess a given thing. That is in the hands of national organizations in any case.
Yes, I think it is possible. I think the national training program will be offered this fall. Work on this is already well advanced.
Thank you. That's an excellent question.
In recommending what we did with respect to consultation, we really took to heart the advice provided to us by our three members of indigenous identity. While they believe that there are many members of indigenous communities who are supportive of MAID and who, as individuals, may wish in the future to either access MAID or support their family members in accessing MAID, they also recognize that it is important that these consultations occur. This is something they've been expecting, in fact, since MAID was first permitted, and it ought to be made good on.
What are the best mechanisms to achieve that? Where we landed was that this ought to happen at a provincial level, perhaps with the collaboration and leadership of the federal government. Because the communities are very different, having a single kind of indigenous, pan-Canadian consultation wouldn't necessarily work or reflect the important differences and nuances between the many indigenous communities that are out there.
Whether it can be done in a way that would respect the March deadline, I think it's for those communities to express themselves on that.
I'm going to again preface my question by saying my area of expertise is not administration and service provision in mental health. I'm going a bit from my clinical experience and my work on this report and on this topic.
I think it's highly variable. I think there are groups that do not have quick and appropriate access. I see that every day in my practice. Particularly in first-line care, people are waiting a long time for pretty simple things. I see people who have great access to mid-level care, but when they need something subspecialty, it's difficult to get—and the opposite. It depends on where you live in the country, unfortunately.
You see people who actually are quite severely affected and they actually have—that's a good thing, right, the system actually works sometimes—appropriate services that are at a level of intensity that is needed for the care of those folks. I do think it's highly variable. Obviously, like all health care services, it's worse, I think, and access is poorer the farther away you are from urban centres. In urban centres you have lots of providers, but there's a discontinuity there that maybe is less obvious than in rural areas. That's something I experienced when I did locums up north, where there was less provision but it was actually more coherent.
I think there's a lot of variability.
Yes, I have to assume that in each province, each province with its different geography, east, west, north, south, right, and some are very long, and some are this way, and with different regional characteristics, that there needs to be thought, as there is for all health care services, I would say, about the best way to deploy a service or a practice.
I'm hesitating about the idea that all rural communities will have the same vision about how it should be done. I'm thinking that at the level of provincial planning, working with different rural areas is going to be necessary in order to ensure that service provision is what they want it to be.
For example, I can imagine in some areas, growing on what we were doing during the pandemic, the idea of doing video consultations will be quite welcome. In other rural areas where actually getting there in person might not be so difficult, people might say they actually want to have what I did up north—have locums where people come in and they can see them in person.
I think it's going to be, again, quite variable depending on the region.
Thank you very much, Chair.
There are two questions I wanted to ask Dr. Gupta. Thank you for coming and taking this yeoman's duty today to spend all of this time answering our questions.
There are two things. During the course of hearing our witnesses, we have heard something that kept recurring. People said you shouldn't look at establishing incurability based on looking backward at what people's treatments were, what their access was, etc. You should be looking forward at what is the next big cure or what the next thing is, and giving them that kind of hope before you offer MAID. It's saying, “No, let's keep going and look forward to what we have to offer.” That's the first question that I'd like to hear a comment on.
The second one is about a point you made in the report. Basically, a lot of people can't.... Witnesses in the hearings tended to take suicide and mental health and conflate them. You clearly said in your report that people do not have suicidal ideation purely because they have a mental health problem. In fact, the majority of people with mental health problems don't express suicidal ideation.
The second piece is that a lot of people with suicidal ideation do not have a mental health problem. Should we conflate those two? Should we see them as separate issues? You are making the point that they are separate issues.
Thank you very much for those questions.
I'll start with the second one first. I think that's absolutely right. There's obviously an overlap between mental disorder and suicidality. It can be a symptom of a certain number of psychiatric diagnoses. It is associated with completed suicide, but it is also the case that there are people who are suicidal who do not have a psychiatric diagnosis, so they need to be understood as two separate things.
As I mentioned earlier, there was suicidality in track one. I remember a case in which a man attempted to kill himself because of the severity of his chronic pain. He did not complete suicide and he came back and asked for MAID. I think that case raised very similar questions. Are we basically helping him kill himself? This was not a man with any kind of psychiatric history.
You're absolutely right that they should not be conflated, and suicidality should be treated as its own phenomenon independent of mental disorder. It may be the case that the person has a mental disorder, but we should be just as concerned about suicide in the person who does not have a psychiatric diagnosis as we are in the case of the person who does.
With respect to incurability, I'm going to come back to the technical clinical point that I made earlier, which is that with certain diagnoses, because of what we know about the trajectory of those conditions, the moment the person receives the diagnosis, we have a pretty good idea of how things are going to evolve and we have a greater degree of certainty. With others, particularly what we call chronic medical conditions, at the time the person is diagnosed it's very difficult to know what's going to happen, so they have to try a bunch of things and see what impact that has on their condition.
When we translate that to the MAID situation, if somebody has a chronic condition, the only way we can say something about the severity of their illness is to look back and say, “What has this person done?” It is the case that some people try lots and lots of things and don't get a significant degree of relief or an improvement in their quality of life? Happily, many do.
In reading the report, in which each of the recommendations includes precautions, I got the impression that very few people whose only medical problem is a mental disorder would have access to medical assistance in dying.
The Quebec commission that discussed eligibility and non-eligibility for MAID did not reach this conclusion and the bill tabled yesterday excludes this situation entirely.
Given the lack of social consensus or social acceptability related to mental illness, Dr. Gupta, don't you think the March 17, 2023 date is premature?
I'd like to say two things about that.
First, it's true that very few people are going to have access to it if we follow our recommendations. At the same time, these are similar recommendations to those of countries where this practice is allowed and where very few people have access to medical assistance in dying. If they have little access to it, it is precisely because there are many treatment options.
We should ensure that people have access to care and services. A minority of people will find themselves at the end of a long and dark journey caused by mental illness, but this could happen if "incurable" were defined that way.
Secondly, with regard to exclusion and the notion of social consensus or acceptability, I hesitate. Sometimes, what is socially acceptable is not the right thing to do. Not long ago, homosexuality was not socially acceptable, whereas driving while intoxicated was socially acceptable.
Dr. Gupta, the conclusion of your report stated, “This report is the beginning of a process, not the end.” You very clearly outlined that the expert panel played a very specific role. It was defined clearly by your terms of reference. As we, as a parliamentary committee, take the baton, so to speak, and carry on with this study, we're grappling with a major role because we're ultimately going to make recommendations to the government as well. We, as legislators, may ultimately play a role in debating a future bill on this.
I don't have much time, so my question to you would be this: Do you have any advice for us on the things that we should be keeping in mind as we continue this study based on the experiences that you had, being so deep in these issues before us?
Thanks a lot for the question.
I'm going to take advantage of the question to also answer Senator Mégie's question from earlier about last advice.
I think that I would be really critical about exceptionalizing mental disorders and treating mental disorder as a sole underlying medical condition as some entirely distinct reality from people with comorbid mental and physical disorders or people with other kinds of physical disorders. That would be my advice. The clinical reality does not support that idea.
It's worth noting that, in the small number of countries where this practice is permitted, there are no legislated safeguards that are specific to people with mental disorders as a sole underlying medical condition. The reflection I think has pretty much landed where we've landed in terms of the greater commonality versus difference, particularly when it comes to eligibility.
As for Senator Mégie's question—
Thank you, Mr. Joint Chair.
Just quickly, Dr. Gupta, first of all, let me add my thanks to the long list of those who are grateful for everything that you've done, including being here today.
I just want to pick up on something that Mr. Cooper asked you. He did what lawyers sometimes do. He loaded the question with the answer, and he used the word “prematurely” when he was asking you if you thought it was an acceptable risk for people to prematurely end their lives.
I just want to give you an opportunity to answer that question again, because your answer suggested to me that you were saying it's up to the individual, which is the point you were trying to emphasize, not the premature aspect of his question. Is that fair?
My answer is actually not that long or complicated. The question she asked was what my final reflection was after having done all of this work.
I recognize that it's difficult and that these issues are complicated, so we sort of have two choices. One is to say this is too complicated, and we're going to avoid it. The other is to say this is complicated, and let's bring our best resources to bear on it and let's try to come to ground. That's what we did as a panel. There were plenty of divergent views on our panel, but let's try to come to ground on something that makes sense for patients and families.
I am confident that this group will continue to do its good work. I hope, and my advice to you is, that you not avoid the hard issues because they're hard.
The main tool is the fitness criteria that we use in clinical practice in Quebec and in Nova Scotia. We also use the Applebaum criteria, which are complementary.
As you probably know, there's also a movement coming out of the United Nations to respect people's wishes, even when they have a mental disability. We talk about supported decision-making in the report. We didn't want to go too far because this is an issue that requires a lot more thought.
There is legislative reform in Quebec. There is already legislation in British Columbia, and I believe in Alberta as well, where they are putting in place structures for supported decision-making for patients with limited autonomy. This is somewhat the current trend.
It's part of the broader trend of no longer telling people that because they're not capable of making decisions, you force them to do things or you give someone else the right to decide for them.
At this stage, we haven't gone too far. We see that legislative initiatives have already been taken across the country. That being said, that's why we've recommended that data be collected on this.
We've also heard testimony that may have created confusion in our minds. I've written this down because it's complicated. The testimony suggested that people who have been accepted for MAID for a mental illness—including those who are comorbid, who have a mental illness and a physical illness at the same time, and who are currently acceptable—have not received substantial amounts of treatment and, therefore, MAID should never be provided to those individuals.
Can you help us through this conundrum? Maybe talk about what kinds of treatment processes, what duration of illness and what kinds of things a MAID assessor would have to look at, not just for mental illness but also for comorbid mental illness—a mental illness and a physical illness at the same time.
With respect to the question of threat, I don't know. I don't know what's going to happen. I can't promise you that there isn't going to be some impact on some of the other groups because that remains to be seen. That is not what we have learned from the countries that permit this practice, so to the extent that we can base ourselves on that, it seems like it's not very likely.
Actually, it's a credit to communities that have raised these worries. The disability community in particular, I think, has sensitized everyone in this debate to be mindful of the threats to well-being and to quality of life, and that MAID assessors and providers need to remember that, be sensitized to that and to take that into consideration.
Actually, they need to keep going in their efforts to sensitize us to their lived reality. I think that work has actually been invaluable. You will notice in the development of the CAMAP curriculum that this actually has led to the incorporation of people with lived experience, people with disabilities, etc., so that MAID assessors and providers are going to learn from their experiences. That would be my answer to that.
With respect to your second point, it's generous of you to ask for my opinion on that. The thing that has troubled me throughout the debate as I've been following it along is the strands of illogic or incoherence that we can allow MAID for mental disorders when the person has a comorbid physical condition, like somehow that erases their vulnerability or erases their history of suicidality. Now they have a physical condition, so it's okay and they can have access, but if that same person doesn't have the medical condition, they must never have access under any circumstances. There's an inherent illogic there that I have never understood. When somebody has a condition where it's really difficult to predict what's going to happen, they can have access as long as it's not a mental disorder. This illogic is concerning to me, and I would encourage you to find a solution to this illogic. I think there are different ways of doing that.
It worries me because it suggests that as a society we don't believe that people with mental disorders can really ever be capable of making their own decisions for themselves. I think we've really fought hard against that for a long time, so I am surprised.
I absolutely understand the arguments about lack of resources. To me, it's not a choice that we have MAID or we have better resources. We need to have better resources—period—but that's not a reason not to have MAID.
With what my colleague Senator Dalphond just said, “to err on the safe side,” I'm going back to what you and Mr. Thériault were discussing in your exchange and the fact that March 23 is less than a year away. There are a lot of questions. In fact, Ms. Abby Hoffman, when she appeared before our committee, said there haven't been consultations with first nations, Métis and aboriginal peoples.
If the provinces are not ready, will it fall upon individual practitioners to make decisions? I'm really quite concerned about the readiness of our country, province by province and territory by territory.
Would you comment on anything to reassure me, others listening and members of this committee? It is less than a year away and we seem to not have the consistency and the standards across our country.
Before I thank you, Dr. Gupta, you have recommendation 14, which makes the recommendation of consultation with first nations, so I think you've covered that, as well, in the report.
Thank you very much for offering up your time this afternoon to face a barrage of questions. It speaks to the fact that we are very engaged on this very important topic. We very much appreciate that you took the time to come and speak to us so eloquently about the work that you and your committee did. Thank you. It will help us as we move forward.
As you saw, we still have some questions. That comes with our job.
With that, committee members, we will suspend. We will now attend to committee business. As you know, it's a different link and password. I will suspend for the moment and ask you to reconnect with the different link in a minute or two.
Thank you very much. This meeting is suspended.
[The meeting was adjourned at 6:53 p.m. See Minutes of Proceedings]