Justice Committee on Nov. 5th, 2020

[Dr. Leonie Herx]

It's very important that the 10 days be upheld. In fact, some would say the period should be even longer. Dr. Chochinov's work shows that the desire to die is actually relinquished over about a two-week period when there is proper support.

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

Thank you for that answer. Maybe you could comment on the suggestion by the government that in an actual setting, same-day death would never happen.

Before, however, you comment on or respond to this idea, which we've heard the government say in some of the debates in the House, I want to also ask you about the removal of the requirement to have two witnesses and the reduction of the requirement to just one, with the proviso now, under the legislation, that a health care professional could be a witness.

Are you concerned about issues of conflicts of interest or undue influence on vulnerable patients?

[Dr. Leonie Herx]

Absolutely. I am very concerned, as are many of my colleagues, about possible coercion, either subtle or overt, from health care professionals. As we've seen and as I've reported already, many persons have had MAID suggested to them because of their circumstances.

We also have instances of medical professionals involved in MAID suggesting to persons that they should get it sooner because they might lose capacity.

I already witness every day issues of coercion in which professionals are suggesting to patients that they should get MAID sooner because they might miss their opportunity. Having two independent witnesses is very important to make sure that people are not being pressured by the health care team to choose MAID, whether because of lack of resources or perceived poor quality of life, as I mentioned earlier.

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

Thank you for that.

I'd also be interested in your comments on risks associated with advance consent.

[Dr. Leonie Herx]

I think it's very difficult to have advance consent for MAID. When a person loses capacity, they don't actually know what they're agreeing to at that time. Every week I see patients who have requested MAID and who actually end up getting MAID, even though they don't have capacity. There is sometimes a disagreement between me and a MAID assessor or provider about what capacity the patient has.

For example, a patient would change his mind from time to time about whether he wanted to go to a hospice and have a natural death wherein his pain was well controlled or have “the needle”, as he called it. He wasn't able to differentiate between those two and would flip from one to the other even hour to hour, which is a very consistent process in delirium, when you're not fully comprehending and understanding what you're asking for.

At a time when people are getting MAID through an advance directive, how do we know, when they lack capacity, that it's still what they want and that they still understand what they're getting? I don't think that's possible.

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

How much time do I have, Madam Chair?

[The Chair, Liberal, Iqra Khalid]

You have 15 seconds, Mr. Cooper.

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

I have 15 seconds. Well, I guess my time has expired.

[The Chair, Liberal, Iqra Khalid]

Thank you very much for that.

We'll now move to Mr. Virani for six minutes.

Go ahead, Mr. Virani.

[Arif Virani, Liberal, Parkdale—High Park, ON]

I'll start by just saying hello to an old friend and debating colleague from McGill University. It's nice to see you, Mona Gupta. I'll try not to call you Mona. I'll call you Dr. Gupta in this platform. I recollect that those of us who thought we were smart were debaters and went to law school, but those of us who were actually smart went to medical school, so we know what category you firmly fit into.

True to form, Dr. Gupta, you've actually teased out some of my questions. I had a look at the charter statement. I had a look at some of your work on this issue about mental disorders, mental illnesses and so on. You canvassed a couple of points that are raised in the charter statement, but there are a few others that I want to put to you. I'd like for Dr. Rajji to also comment.

Other components as to why—

[The Chair, Liberal, Iqra Khalid]

Sorry, Mr. Virani; can you please move your mike closer to your mouth?

Thank you.

[Arif Virani, Liberal, Parkdale—High Park, ON]

Yes. I apologize for that.

With regard to the other components or considerations that went into our reasons for excluding mental illness, one is that the exclusion is not outright. You know that it can be coupled, as you mentioned in your comments, with some other disorder or condition.

Two is that this issue has actually been legislated in Belgium, the Netherlands and Luxembourg, and we've seen rising cases of medically assisted dying in those jurisdictions, including in some areas that seem fairly grey to neutral observers.

The third point is—and this is just me as a layperson, and there are many more laypersons than doctors in this committee who understand this—that when suicidal ideation, contemplating suicide, is just a manifestation of a condition, does that necessarily need to nuance our approach to mental illness as mental illness or mental disorder as mental disorder?

Could you comment on those three aspects? Then I'll ask Dr. Rajji, perhaps, to comment as well.

Thank you, Dr. Gupta.

[Dr. Mona Gupta]

I think part of what motivated what I was trying to bring to the committee today is the fact that people who have mental disorders and physical disorders can access medical assistance in dying now and have already accessed medical assistance in dying, and that these types of clinical situations raise exactly the same kinds of concerns that the government indicates in its charter document. If we're able to assess capacity now, if we're able to assess irremediability now in cases of medical and physical comorbidity, it's not clear to me why we wouldn't be able to do it when a mental illness is the sole underlying medical condition.

In order to nuance, I think, an exclusion, if that's the government's wish, there has to be a characteristic that is really unique to that group of people. Clinically, I don't think there is one.

As for the experience of assisted dying in the Benelux countries, this remains a marginal practice relative to the practice of what's called there “euthanasia and assisted suicide”. I think a rise in the number of cases does not, in and of itself, suggest any phenomenon one way or the other. Cases of assisted dying, in general, rise over time. That's something that we've seen in our own jurisdiction. That's something the Commission sur les soins de fin de vie has documented since it began keeping data in 2015. In and of itself, a rise doesn't tell me anything specific. The fact is that it remains a marginal practice. In Belgium in particular, in fact, the cases have declined over the last four years. The practice is so marginal and the case numbers are so small that I don't think these small increases and decreases in either direction really tell us very much.

As to the last point about suicidal ideation, this is something that's come up a lot in this debate. I think this is a very fair point. Every day in psychiatry, we meet people who have suicidal ideas. Every day in the course of clinical care, we have patients who have mental disorders and who also have physical disorders, who have to make high-stakes clinical decisions that could even be life-threatening decisions. They may have been suicidal in the past. They may have made suicide attempts in the past. Clinically, our role is to see if they are capable of making that decision now and to try to understand their suicidal thinking over time and over the trajectory of their illness. That's something we do now. That's something we will have to continue to do.

You'll see this when you receive our document from Quebec. The idea that someone's going to come to an emergency room in acute crisis because of the end of a relationship and with suicidal thoughts and that they're going to access and receive MAID on that day is not what we have in mind by a structured and rigorous practice. We're talking about people who have suffered over decades and have, really, had access to a very complete armamentarium of available treatments; we're not talking about suicidality.

[Arif Virani, Liberal, Parkdale—High Park, ON]

Thank you very much, Dr. Gupta.

I want to add Dr. Rajji into this conversation, but I also note that you, as a member of the Council of Canadian Academies, know that the preliminary report itself was not conclusive on this aspect and you suggested further study.

Dr. Rajji, could you comment on that?

Also, Dr. Gupta, could you just say in 10 seconds whether you agree this should be put off to a further parliamentary review or not?

[Dr. Tarek Rajji]

I just want to clarify, Mr. Virani. Do you want me to comment on the question of further studying or on all the points you raised before?

[Arif Virani, Liberal, Parkdale—High Park, ON]

It's a little bit of both. I appreciate that you are pressed for time, but I'm interested in the further study point as well as the other points that I raised.

[The Chair, Liberal, Iqra Khalid]

Be very brief, Dr. Rajji. We're very, very short on time. Thank you.

[Dr. Tarek Rajji]

I want to underscore the fact that there is no consensus in our field about how we define “irremediable mental illness”. The fact that there are different opinions, and strong different opinions, speaks to the fact that there is no consensus. That's what the CCA, after a month of deliberations, concluded.

I think the point I was making in my presentation was that a finding of irremediable mental illness needs to be based on scientific evidence. When we talk about some of the most severe conditions in mental illnesses, like psychotic illness, and when long-term studies show that up to 30% of people go into recovery in the long term from these conditions, that's not a minority. That tells us about the weakness now of even predicting the trajectory at the individual level.

[The Chair, Liberal, Iqra Khalid]

Thank you very much, Dr. Rajji.

Mr. Virani, unfortunately we're out of time for you. We'll move on to Monsieur Thériault.

You have the floor for six minutes.

Go ahead, Monsieur Thériault. Your time starts now.

[Luc Thériault, Bloc, Montcalm, QC]

Thank you, Madam Chair.

I want to thank all the witnesses for their enlightening presentations.

Dr. Gauthier, you have 35 years of experience. Your clinical experience in neurodegenerative diseases enables you to state today that you can recognize free and informed consent that's valid beyond any doubt. You spoke about the stages that measure the progression of the disease.

I want you to explain how, based on your experience, you can recognize when free and informed consent is provided in cases of cognitive degenerative diseases.

[Dr. Serge Gauthier]

Thank you for your question.

For some neurological diseases, there are well-known clinical stages, which usually last several years. At the start of these diseases, people are encouraged to make plans for their financial and personal affairs. Medical assistance in dying may soon be part of these plans.

Of course, we'll see only in a few years whether we can act upon the choice that a person made five years beforehand. In other words, this 84-year-old woman, whose very organized text that I read to you shows her level of education and her clear-mindedness, is choosing to seek medical assistance in dying at a stage that will occur in four or five years.

For the committee's purposes, I'm simply asking whether you can add the concept of disease stages as part of the planning process for medical assistance in dying. This must be done without going into detail, because each disease has different stages. In the next few years, new treatments may emerge that will change the progression of the diseases. What won't change, however, are the references points, the key points in the progression of most of these diseases. I'm thinking of the loss of mobility and the first pneumonia, for example. These things won't change, even if therapeutic advances are made.

[Luc Thériault, Bloc, Montcalm, QC]

Until what stage would it be possible to establish an advance directive or request?

Today, you take it for granted that everyone knows the stages of these diseases, such as Alzheimer's disease. You wrote a remarkable book on the topic. I'd like you to provide a few more details.

In your experience, until what point could an advance directive be considered valid?

[Dr. Serge Gauthier]

Thank you for the question.

Usually at the onset of the disease, after diagnosis, people are asked to write down their choices. They usually do this in front of a notary and in the presence of family members. They must then designate the individuals responsible for them, a proxy or a trusted person. In some cases, they must give specific instructions on the disposal of assets. They must also record their personal care preferences in anticipation of when it will be needed.

We're talking here about stage 3 out of 7, in the case of Alzheimer's disease. Stage 3 is mild cognitive impairment. However, new biological tests now enable us to diagnose the cause of these mild disorders.

The next stage is mild dementia, which usually occurs at stage 4 out of 7. At this stage, people still drive their cars, but in familiar places. They need help managing their taxes or their more complex finances, but they're still independent.

There's no real debate about whether these people are competent at these two stages, meaning stages 3 and 4 out of 7.

[Luc Thériault, Bloc, Montcalm, QC]

Thank you. That's very interesting.

In terms of mental illness as the sole criterion for exclusion, the more evidence that I hear, the more I feel obligated as a legislator to look further into the issue.

There's a difference between mental illness, schizophrenia and Alzheimer's disease. Not all cognitive disorders can be categorized in the same way.

As legislators, we must establish beyond a shadow of a doubt a patient's capacity to give free and informed consent and to confirm the validity of this consent. However, in light of what I've heard to date, I can't yet comment on the issue of mental illness.

That's why we definitely want to continue the reflection process after the bill is passed. We want to do this now, and not in four years. This reflection process could include the whole issue of neurodegenerative diseases.

[Dr. Serge Gauthier]

I completely agree.