Medical Assistance in Dying Committee on Sept. 23rd, 2022

[The Joint Chair, Hon. Yonah Martin]

We are ready to resume, colleagues.

I have just a few comments for the benefit of our new witnesses.

Before speaking, please wait until I recognize you by name. All comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly. Interpretation in this video conference will work like at an in-person committee meeting. You have the choice, at the bottom of your screen, of floor, English or French. When you are not speaking, please keep your microphone on mute.

We'd now like to welcome both of the witnesses on our second panel, who are also here to discuss MAID when a mental disorder is the sole underlying medical condition. They are, as individuals, Ms. Justine Dembo and Dr. Natalie Le Sage, physician, clinical researcher and MAID provider.

Thank you, both, for joining us this morning.

We will have your testimonies of five minutes each—first Ms. Dembo, followed by Dr. Le Sage—and then we will go into our first round of questions.

Ms. Dembo, the floor is yours for five minutes.

[Dr. Justine Dembo, Psychiatrist, Medical Assistance in Dying Assessor, As an Individual]

Thank you. I'm honoured to have been invited today to speak with the joint committee.

I'm a psychiatrist at Sunnybrook Health Sciences Centre in Toronto and an assistant professor at the University at Toronto. I've been a MAID assessor since 2015.

I've been engaged in MAID research since before Carter, and I have been teaching psychiatric residents and medical professionals, including MAID assessors and providers, about MAID on a regular basis. I'm currently part of the development of two MAID curriculum modules through the Canadian Association of MAiD Assessors and Providers. I was an expert witness for the Truchon and Lamb cases. I was also a member of the government expert panel.

I'm speaking today as an individual, independent of my involvement with these organizations, so the opinions I'm presenting are completely my own. I'm hoping to focus on a few important points.

First, I would like to emphasize that many committee members may be receiving incorrect information about how the MAID process actually unfolds on the ground. You may have been given, by some individuals who are not involved in MAID assessment or provision, false information regarding the degree of rigour and caution exercised by assessors and providers, as well as about the degree of care these medical professionals put into their work and the efforts they make to improve the quality of life of MAID requesters. I'm happy to walk you through how I approach MAID assessments if you ask that of me today.

I urge you to be cautious in accepting comments about the MAID process by individuals who are not involved in the process directly. I urge you to remember that MAID assessors and providers are conscientious individuals who care about life and quality of life. They do not proceed unless, after a thorough evaluation, they are satisfied that a patient clearly meets all criteria and that proceeding is the right thing to do. All of us are doctors and nurse practitioners who entered medicine in order to help people and who remain deeply committed to that.

I can speak only for myself, but I am part of a network of other MAID assessors and providers. I have been witness to the immense efforts my colleagues make to ensure that they are leaving no stone unturned in their attempts to find other ways to help alleviate a patient's suffering and in their efforts to ensure that patients are making a fully autonomous and capable choice that is free from coercion.

Many of my track two assessments—that is, for patients who do not have a reasonably foreseeable natural death—proceed over the course of months to years, with multiple visits and with the implementation of additional supports, interventions and sometimes very creative attempts at improving quality of life.

Second, I am also concerned that the committee members have heard that MAID is being used as an alternative to the implementation of either better medical care or psychosocial supports such as housing. I did address this concern in detail in the brief I submitted to you on May 9, 2022. I urge you to review that brief.

For the moment, I will simply say that to phrase it in this way creates a false dichotomy. MAID is never a substitute for medical care or housing. Someone who requests MAID must be assessed in the totality of their circumstances, which requires taking into account issues such as whether a lack of adequate medical care or housing is contributing to the request. The safeguard requiring irremediability of the condition relates to this matter. I urge you to review the government panel report's section on grievous and irremediable medical conditions, as I fully stand behind the recommendations we made.

The panel report states that MAID assessors should establish incurability and irreversibility with reference to treatment attempts made, the impacts of those treatments and the severity of the illness, disease or disability. The panel also states that, as with many chronic conditions, the incurability of a mental disorder cannot be established in the absence of extensive attempts at interventions with therapeutic aims. This means that someone who has not had access to adequate care would not be eligible for MAID. Therefore, MAID could never be used as a substitute for good psychiatric care.

The panel recommendations were intended to build upon the strength of the already-existing safeguards and guidelines, and I believe they do just that.

I'm going to add that I strongly disagree with an earlier witness that there was no space for meaningful discussions about vulnerability. In fact, the panel discussed vulnerability at great length. The panel recommendations add additional guidance and protocols and provide detailed interpretations of the currently existing criteria. This will help guide assessors and providers to understand better how to follow the law, with respect to both MAID in general and MAID in sole mental illness. Following these guidelines would ensure an extremely comprehensive, thorough and cautious approach.

Thank you so much for your attention. I'll stop there and I welcome your questions today.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Dr. Dembo.

Next we will have Dr. Le Sage.

[Dr. Natalie Le Sage, Physician, Clinical Researcher and Medical Assistance in Dying Provider, As an Individual]

Thank you so much.

I would like to start out by thanking the committee for inviting me to give testimony for your important study.

I have practised and taught emergency medicine for over 30 years in a teaching hospital that had a psychiatric ER unit. I am also a clinician-scientist, and I was a member of the research ethics committee of the same hospital for seven years. I am therefore well aware of the notions of capacity to consent to care, of suicidal risk, of informed consent and the right to self-determination. I am now at the end of my career and my practice almost exclusively consists of providing medical assistance in dying.

At the ER unit, I was called upon to evaluate hundreds of patients suffering from mental disorders who were at crisis point. I remember one patient who was receiving excellent support from multidisciplinary teams within our system, but for whom effective treatment options were limited. At one point, she started to suffer from major health problems and decided to refuse treatment. This was not enough, unfortunately, and she took her own life after suffering for many years. Perhaps she could have had a more serene death.

My time as a member of the ethics committee was also an enriching experience. I think that the current debate is similar in many ways to research ethics. It seems that by claiming to protect vulnerable populations, we ignore them or exclude them from the accepted rules that apply to the general population. Paradoxically, we find ourselves discriminating against them, which by definition is contrary to our ethics.

The current law already establishes conditions for eligibility to medical assistance in dying, and these conditions could very well be applied to mental disorders. Of course, in cases where a mental disorder is the sole underlying medical condition, we do see some difficulties in applying the rules, especially when it comes to establishing capacity, incurability and irreversible decline. Moreover, it is not always easy to distinguish between suicidal ideation and a reasonable request for MAID.

In those cases, what conditions or safeguards would we need?

As a practitioner providing MAID, I believe it would be important and necessary that the professional opinion of a psychiatrist be part of the file to confirm the incurability and the irreversibility of the patient's mental disorder, as well as the absence of criteria contraindicating MAID. That said, I do not think that the two assessors have to be psychiatrists, especially as a lack of resources could constitute a huge barrier, especially in remote areas.

If the attending psychiatrist wishes to be an assessor, that person would be, in my opinion, the most appropriate candidate. That person would be able to establish the grievous and incurable nature of the disorder affecting his or her patient, their suffering as well as their capacity to consent. I believe that by requiring a second psychiatric evaluation in these circumstances, we would be creating another barrier that would unduly reduce these patients' access to MAID.

In conclusion, I believe it is important to eliminate the discrimination surrounding access to MAID for patients for whom a mental disorder is the sole underlying medical condition. It is possible, with the appropriate framework, to ensure that these patients are deemed eligible. However, the framework must not constitute an insurmountable barrier to patients who are suffering hugely.

I thank you for your attention and I would be pleased to answer any questions.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much to both of you for appearing before our committee today.

We'll go into our first round. We will begin with Mr. Cooper for two and a half minutes, followed by Madame Vien for the remainder of the time.

Mr. Cooper, go ahead.

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

Thank you, Madam Chair.

I will direct my question to Dr. Dembo.

In 2013, you wrote an article entitled “The Ethics of Providing Hope in Psychotherapy”, in which you describe “Patient 1” as a “38-year-old woman with schizophrenia and obsessive-compulsive disorder, with both illnesses proving resistant to multiple medications and psychotherapies”, who had suffered “10 years of chronic, severe distress”.

You saw her in an intensive care unit, and after thoroughly assessing her and conducting a detailed review of the literature, you concluded that “there was almost no likelihood that she could recover”. Yet instead of helping her die, you conveyed hope to her. After another treatment attempt, her symptoms “vanished, and she has now remained well for 2 years. She is once again engaged in academic and advocacy work, as well as with friends and family, and grateful to be alive”. You concluded that “in hindsight, it seems that we did the right thing, but, at the time, we could not have possibly known.”

Does that not underscore the determination of the expert panel that you served on, which stated, on page 9, that “it is difficult, if not impossible, for clinicians to make accurate predictions about the future for an individual patient” in cases of mental illness? Doesn't that demonstrate the significant risk, in opening the door to sole mental illness, that persons will have their lives prematurely ended, persons like “Patient 1”? At the time, MAID was not available.

[Marie-Françoise Mégie]

Thank you for your question, Mr. Cooper. You brought up some very important points.

That publication is interesting because it's been brought up in some of the cases that I have testified for. That was a situation where MAID laws did not exist in Canada. That patient was not assessed for MAID eligibility whatsoever, so we have no idea whether she would have been eligible for MAID or not. Also, that was two years of improvement followed by another deterioration, unfortunately.

You're right, and I agree with what we said in the panel, that it is challenging to predict irremediability in the case of sole mental illness on a case-by-case basis. That said, there's a degree of uncertainty that is equal to that in MAID on track two already. Even in track one, we have uncertainty about whether a patient might change their mind or adjust to their life-threatening condition at the last minute.

The key is, I think, to assess patients on a case-by-case basis, remembering that patients with autonomy and capacity are allowed to make decisions in the face of uncertainty in medicine all the time. We as the assessors must share in that decision-making process with them and do the best we can, but this kind of imperfection exists throughout medicine.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

You have the floor, Madame Vien.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Thank you.

Welcome, all.

Dr. Dembo, Quebec has decided not to proceed on this issue. Some people are talking about discrimination when we raise the possibility of giving the same weight to mental disorders as that given to physical illness when it comes to administering MAID.

What do you think about discrimination in this instance?

[Marie-Françoise Mégie]

Can I just clarify if what you're asking about is the idea that it would be discriminatory to exclude patients with sole mental illness?

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Yes, absolutely.

[Marie-Françoise Mégie]

Thank you for asking that question.

Yes, I do believe it would be discriminatory on several levels.

Number one, people with mental illness, especially chronic and severe mental illness, can suffer unbearably for decades. Their life course can be derailed. Their personhood can be detracted from. They can be in physical pain as well as emotional pain, and their distress, their suffering, is equally valid, as valid as the suffering of someone with what we term a physical condition.

There's also the challenge that we can't fully distinguish physical from mental in many types of conditions, such as chronic pain, which would be eligible under track two.

To say that someone with a mental illness just shouldn't be eligible, that being a blanket statement where people don't even get the chance to be assessed as individuals in their unique circumstances, to me is very stigmatizing in the way that mental illness has a history of being stigmatized.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much.

Next is Madame Brière.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

Hello.

Thank you, Madam Chair.

I would like to thank our two witnesses for their very informative presentations. Their experience and their work will really help us in our study.

Dr. Dembo, you have already stated that physical suffering, just like psychological suffering, could compromise decision-making as well as free and informed consent. You believe that the individual should be evaluated in both instances.

Does that mean that you believe that we should consider requests on a case‑by‑case basis?

Finally, what should we be assessing?

[Marie-Françoise Mégie]

Thank you so much. That's a really important question on a few levels.

Yes, I think we're looking at the person. There's actually a writer on suffering who was in medicine, Eric Cassell, who talks a lot about suffering being a situation where the integrity of the person is threatened. I think that applies to both physical and mental illness. Assessing on a case-by-case basis is the only way to get an understanding of that unique person, their needs and their circumstances. Having an assessment also creates a relationship between the assessor and the person being assessed. It is within that unique relationship that the assessor and the person being assessed can come to a shared understanding of the situation and can collaborate. I think it is vital that people be assessed case by case rather than through a blanket statement.

With respect to your comment about physical pain, I think you're referring to what I mentioned around the severity of suffering both physically and mentally. That's also something that I think can only be assessed qualitatively between the assessor and the person being assessed.

I hope I've answered your question.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

Yes. Thank you very much.

When it comes to discrimination, we have heard that it is possible to correctly assess persons whose sole underlying medical condition is a mental disorder and that the framework should not constitute a barrier to those who are suffering.

Doctor Le Sage, could you further elaborate on what you said in your presentation?

[Dr. Natalie Le Sage]

As my colleague said, the framework for physical illness provided for in the act sets out strict eligibility criteria. When a patient is considered eligible, that means that the criteria have been applied carefully.

You have to understand that we are not taking here about a neighbour who is depressed after his divorce. I believe your committee has heard this on numerous occasions. We are talking about rare cases, situations where the psychiatrist is able to assess the irreversibility of the disorder. We are talking about serious chronic illness.

As a provider, I will have all the available information, just as we do currently. Since we have been providing MAID to persons whose death is not reasonably foreseeable, that is to say since March 2021, we have already been confronted with this type of situation when it comes to physical illness. I am speaking of the uncertainty surrounding prognosis. We carefully apply the criteria in order to avoid discriminating against the patient.

The same conditions apply to mental disorders.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

Would it be possible to strike a balance between a good assessment and avoiding creating barriers for these persons?

[Dr. Natalie Le Sage]

You have to avoid creating too many barriers that would make accessing MAID more difficult and that would add nothing to the quality and the thoroughness of the assessment.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

A number of years ago, I met a representative of an organization called Pro‑Def Estrie in Sherbrooke, whose mission was to protect the rights of persons suffering from mental disorders. That person confirmed that it is discriminatory to not offer those persons access to MAID.

I share your opinion, and I was pleased to hear your arguments. Thank you very much.

[The Joint Chair, Hon. Yonah Martin]

Next we have Mr. Thériault for five minutes.

[Luc Thériault, Bloc, Montcalm, QC]

Hello.

My questions are for Dr. Le Sage.

If I understood you correctly, people are not able to access MAID when mental disorders are the sole underlying medical condition, unless it is possible to establish the chronic nature of the disorder, which would be over a long period of time. On top of the chronic nature of the disorder, the person would have to have tried a certain number of treatments. Is that correct?

[Dr. Natalie Le Sage]

Yes, indeed. The psychiatrist providing MAID must establish that the person has been suffering from a serious disorder over a long period of time which is chronic, and which does not respond to treatment. Often in reports, the period of time indicated is expressed in decades. It is clear that we are absolutely not talking about giving access to MAID to a person who is taken to ER after trying to commit suicide for the first time. This is absolutely not the case. As we have stressed, MAID must not be a way of responding to a lack of resources or to a problem in accessing care.

In all cases, there is a strong analogy to be made with physical illness. When we evaluate a request for MAID, we must be sure that the person has been able to access palliative care and treatment for their suffering. The same criteria apply to mental disorders. We must be sure that the person has received care aimed at reducing his or her suffering.

Medicine, however, has its limits. Medicine has its limits in cardiology, respirology and oncology, why wouldn't psychiatry? You could think that if the system were perfect, we could get a 100% success rate with psychiatric treatment, but that would be false. It's like believing in unicorns.

[Luc Thériault, Bloc, Montcalm, QC]

I don't have a lot of time left.

I would like to talk about the other barriers that could impede access to care. Recommendation 10 in the experts' report clearly states that the assessor should be: “a psychiatrist independent from the treating team/provider.” I think, given your experience in the field, that would be a problem. You believe that there could be a lack of psychiatrists for the provision of MAID

I would ask you to be brief, because I may have another question.

[Dr. Natalie Le Sage]

Is the question for Dr. Dembo or myself?