Medical Assistance in Dying Committee on Oct. 25th, 2022

[The Joint Chair, Liberal, Marc Garneau]

Good evening, everyone.

Welcome to the 22nd meeting of the Special Joint Committee on Medical Assistance in Dying.

I would like to begin by welcoming members of the committee, the witnesses and those watching this meeting on the web.

My name is Marc Garneau and I am the committee vice-chair from the House of Commons. With me this evening is the Hon. Marie-Françoise Mégie, the committee vice-chair from the Senate.

Today we are continuing our examination of the statutory review of the provisions of the Criminal Code relating to medical assistance in dying and their application.

I'd like to remind members and witnesses to keep their microphones muted unless recognized by name by the chair. All comments should be addressed through one of the chairs. When speaking, please speak slowly and clearly.

Interpretation in this video conference will work like in an in-person committee meeting. With the interpretation button, you have the choice, at the bottom of your screen, of floor, English or French.

With that, I would like to welcome our witnesses for panel one. They are here to discuss advance requests.

As an individual, we have Adelina Iftene, law professor.

We also have with us, by videoconference, Dr. David Lussier, geriatric physician, and Dr. Félix Pageau, geriatrician and researcher.

Thanks to the three of you for joining us.

First, we will hear the opening statement of Ms. Iftene, followed by those of Dr. Lussier and Dr. Pageau.

Ms. Iftene, you have the floor for your five-minute opening statement. Please go ahead.

[Dr. Adelina Iftene, Associate Professor, Schulich School of Law, Dalhousie University, As an Individual]

Honourable members of the joint committee, thank you so much for the invitation to make a submission before you today.

As I mentioned in my correspondence with the committee clerk, my expertise is actually not in advance directives or MAID generally. Rather, it is in corrections, health care law and policy for incarcerated people and issues surrounding decarceration. Hence, my comments today pertain specifically to the issues raised by the implementation of MAID—

[Joël Godin, Conservative, Portneuf—Jacques-Cartier, QC]

On a point of order, Mr. Chair, there is no interpretation.

I'm sorry, Professor Iftene.

[The Joint Chair, Liberal, Marc Garneau]

I see.

We'll hold for a second. We're not getting the proper translation.

Mr. Clerk, let me know when the translation is provided so that we can continue.

[René Arseneault, Liberal, Madawaska—Restigouche, NB]

Mr. Chair, we're being told the interpretation seems to be working now.

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

Ms. Iftene, I think we've resolved our translation problem. Please continue.

[Dr. Adelina Iftene]

My expertise is not in advance directives generally or in MAID broadly, but rather in corrections, health care law and policy for incarcerated people and issues surrounding decarceration. So my comments today pertain specifically to the issues raised by the implementation of MAID in prisons, issues that should be prioritized in the review of the MAID legislation.

The conversation so far around MAID in prisons has largely been reduced to dichotomy solutions. Should incarcerated people have access to MAID? Should the MAID procedure take place in the correctional institution or should it take place somewhere in the community?

I want to be clear. To the extent to which and in the circumstances in which MAID is a health care service in Canada, based on the nationally and internationally protected principle of equivalence of care, it must also be available in the same conditions to people who are incarcerated. However, this answer oversimplifies matters, and it does so because the questions it answers entirely miss the point of the problem of illness and death in prison.

It is well known that health care in prisons—basic care, specialized health care and especially palliative and long-term care—is deeply inadequate and often fails to meet any community standard. I, and others, especially the Office of the Correctional Investigator, have long documented the systemic health care inadequacies, and I don’t think these can be the subject of a reasonable, informed debate any longer.

It is also clear that Canada does not have a functional compassionate release mechanism. Section 121 of the Corrections and Conditional Release Act, the parole by exception provision, has been used 20 times over 10 years prior to the COVID pandemic, and it cannot generally be used for those serving life sentences. At the same time, during the same period of time, 30 to 40 people have died annually of natural, expected death in prisons. The use and availability of section 121 has not improved in light of the implementation of MAID in prisons a few years back.

The reality is that in a country where there is no death penalty and no life sentence without possibility of release, the number one cause of death in prisons is natural death occurring at the end of an often known illness for which the individual had limited, if any, adequate treatment options.

If the only consistent and realistic option for this suffering is MAID, Canadian sentences are becoming de facto death sentences. It is unacceptable that it is easier to obtain MAID when one is in custody than to obtain any type of compassionate release.

For instance, a person serving life is not eligible to even apply for parole by exception unless they are within weeks of dying. That, we know, is not the case with MAID. For a discussion on this issue, as well as for a discussion on compassionate release and the way it works in Canada, I would like to draw your attention to the articles I have written or co-written with Professor Jocelyn Downie, which I have submitted to you in advance.

The issue with the fact that there is easier access to MAID than to release is not, I submit, with MAID. Simply prohibiting MAID for those incarcerated or making it harder to access is not a solution to the lack of choice, dignity and autonomy of those in prison, and it is also inconsistent with the equivalence of care obligation. Letting people suffer is not enhancing their dignity or autonomy.

The problem is not with MAID being available to prisoners. The problem is with the lack of adequate release mechanisms and supports. Everyone who has a serious, life-limiting illness or who is in intolerable suffering should be eligible for consideration for some working form of compassionate release. Compassionate release needs to be available not just so the individual can receive the MAID procedure in the community but so they can make all end-of-life decisions in the community, whether those include MAID or not.

The discussions about the substantial reform of release mechanisms—which includes eligibility to be considered for release, the factors that are relevant to the release decision and the expertise of the parole members on these issues—are all discussions that are inherently linked to the broader discussion on the implementation of MAID in prisons.

Meaningful amendments to the MAID legislation must consider those in custody and, as a result, they will have to ensure that people in custody have realistic options for release to community, where they can freely make informed end-of-life decisions.

To conclude, I would like to mention that there are a number of outstanding issues with MAID, in addition to the issue of a lack of other options, including palliative care and release. These include the Correctional Service's exemption from reviewing and investigating MAID death, which is linked to a lack of adequate oversight, and the role prison physicians have in the assessment process. I would be happy to address those issues during the question period.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Ms. Iftene.

We'll now go to our second witness.

Dr. Lussier, you have the floor for five minutes.

[Dr. David Lussier, Geriatric Physician, As an Individual]

Thank you, Mr. Chair.

Thank you for the invitation to come and discuss this important topic with you.

I will begin with a brief introduction.

I am a geriatric physician at the Institut universitaire de gériatrie de Montréal, which is part of the Centre intégré universitaire de santé et de services sociaux du Centre-Sud-de-l'Île-de-Montréal. I have had additional training in pain and palliative care. For the past 20 years or so, I have practised almost exclusively at a chronic pain management clinic for the elderly.

I have been interested in medical assistance in dying since it first became a topic of discussion in Quebec. Although I am a member of Quebec's Commission sur les soins de fin de vie, I wish to point out that I am not speaking here on its behalf, but rather as an individual.

I practise medical assistance in dying, on average, once or twice a month, in some instances for patients whom I have been following for a very long time and in others for patients for whom I have been asked to consult on this specific care. Given my clinical expertise, I normally assess people whose eligibility is unclear or whose natural death isn't reasonably foreseeable. Some of those persons suffer from major neurocognitive disorders.

I also lecture regularly on medical assistance in dying to health professionals and the general public.

Today, I would like to discuss the most important points regarding advance requests for medical assistance in dying for persons with a major neurocognitive disorder.

First, I obviously can't comment on the opinions of Canadians across the country. However, I can rely on the testimony given to the special parliamentary committee of the National Assembly of Quebec last fall and on comments I have gathered during my lectures on the subject and in my practice. Based on that information, I believe there is fairly broad acceptance of advance requests in Quebec in the general population and among persons with major neurocognitive disorders and their loved ones. There is also fairly broad acceptance among health professionals, even though some anticipate implementation issues. Consequently, the Quebec public expects that medical assistance in dying can be made possible by advance requests, and many individuals were greatly disappointed when the bill on this topic had to be abandoned in the spring.

In the present circumstances, since the criterion of reasonably foreseeable natural death was removed, persons suffering from major neurocognitive disorders may be eligible for, and may receive, medical assistance in dying. There is a brief period in disease development where the disorder is grievous enough that it causes advanced and incurable decline in capacity but not yet grievous enough to compromise the patient's ability to request medical assistance in dying. In my experience, persons with a major neurocognitive disorder who request medical assistance in dying wait as long as possible before doing so. In many instances, they do it just before losing that ability, such that, in some instances, the 90-day period must be shortened because loss of capacity is imminent. If they could make an advance request, many of them would probably choose not to request medical assistance in dying at that time so they could continue enjoying happy moments with their loved ones. Consequently, they die sooner than they would have wished. In that sense, it can be said that their right to life, guaranteed under section 7 of the Canadian Charter of Rights and Freedoms, is thereby violated, as the Supreme Court held in the Carter judgment, since, in order to be granted access to medical assistance in dying and not to deteriorate until the end, those persons must die earlier than they would have wished.

I therefore believe that the act should be amended to allow advance requests for medical assistance in dying for persons with major neurocognitive disorders. This is nevertheless a very complex issue from both ethical and implementation standpoints. First of all, it is very difficult to assess suffering, which is, by definition, the subjective experience of a person incapable of communicating it. In some cases, there is undeniable objectifiable suffering, accompanied by non-verbal signs of pain and psychological and behavioural symptoms associated with dementia, such as aggressiveness. In other cases, which are, rightly or wrongly, called pleasant dementia cases, patients are happy in their day-to-day lives despite their cognitive disorders and loss of autonomy. However, if they had seen themselves in that state, they might not have wanted to live. Should the eligibility criterion be contemporaneous suffering or anticipated suffering? That's an important and complex question.

Another important question arises regarding the situation in which the individual making an advance request refuses to cooperate when the time comes to administer medical assistance in dying. At an advanced stage, many individuals resist all contact and treatment and become aggressive when touched. As a result, they reject attempts to insert any intravenous device without previously being sedated or restrained. Even though patients, when they were competent, probably wanted to be sedated or restrained for the purpose of administering medical assistance in dying, are we to disregard their verbal or physical refusal when they are no longer competent? Many clinicians say they would find it very difficult to do so, especially if patients showed no signs of objectifiable suffering.

In short, I think that the act should be amended to allow a person to make an advance request for medical assistance in dying. However, the guidelines and practice guides should be very clear in order to support clinicians who are involved when medical assistance in dying is requested or administered.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Dr. Lussier.

We will now continue with Dr. Pageau.

Dr. Pageau, you have the floor for five minutes.

[Dr. Félix Pageau, Geriatrician and Researcher, As an Individual]

Good evening.

I'm a physician, an ethics researcher and geriatrician. I know Dr. Lussier well, but I don't agree with his position and I will explain why.

First of all, I must say that I am grateful to be taking part in the committee's work once again. In my last appearance, I discussed somewhat more philosophical and ethical contexts. Today I will be talking about a slightly more practical context.

I am aware that a physician is responsible for respecting a patient's autonomy. Of course, the principles of good treatment and non-maltreatment must be applied. The government must protect vulnerable people and protect people from themselves. Which is why it has established a legal age for alcohol consumption and requires people to wear seat belts in cars and helmets on motorcycles. Freedom of autonomy is therefore not absolute in Canada; it is regulated.

I have three arguments to advance and points to clarify. Time permitting, I will also make some recommendations.

My three arguments focus on the following elements: the error that individuals make when drafting their advance directives regarding medical assistance in dying, the error made by individuals who apply those directives, and the societal issues associated with medical assistance in dying by means of advance requests for people suffering from major neurocognitive disorders.

With respect to the error made in drafting advance requests, the problem stems from the fact that people don't have a crystal ball in which they can see the future absolutely clearly. Autonomy must apply in the present and cannot be anticipated. One must also consider with whom will those advance directives be made. Will it be with a specialist in dementia or major neurocognitive disorders, in this instance a geriatrician, a geriatric psychiatrist or a family physician who sees many such patients? It will be necessary to open medical assistance in dying clinics. Do we have the necessary resources? Is there a risk that the physician take a paternalistic approach to providing expertise to these patients? Autonomy would not be fully respected in that instance.

The changing self is another known argument, according to which significant moments in life, such as receiving a diagnosis of major neurocognitive disorder, alter an individual's personality. Families often tell us they no longer recognize a loved one who has received that kind of diagnosis. Those individuals aren't who they used to be. So a major change occurs. Is what a person said 20 years ago still valid today when he or she is proceeding with medical assistance in dying?

Furthermore, those who implement medical assistance in dying directives may make a number of errors. First of all, every written text requires interpretation. Whatever is written, whether texts of law, literary texts or even text messages, must always be interpreted, especially if the person concerned isn't around to tell us exactly what he or she meant. That interpretation may result in a number of errors. It may turn out that the advance directives are not at all applicable. In that case, they will not be applied, which is thus a lesser evil. That moreover is what often occurs in the Netherlands. On the other hand, there is the danger that they may be applied excessively as a result of conflicts of interest among the physicians or among members of the family, whether out of a desire to receive an inheritance, to free up beds or to remove patients with major neurocognitive disorders from emergency departments. When the medical team and family decide instead of the patient, it isn't autonomy that prevails, but rather a form of paternalistic expertise.

Does a lack of refusal really constitute consent? People who simply say yes without understanding exactly what that implies don't really give their consent. This is something we often hear in hospitals. If, for example, a woman says she wants her uterus removed, should we do it? Has she truly understood? Advance directives do not solve this problem. Assent, even implicit, is not consent.

The societal argument is perhaps slightly more philosophical. We are talking here about "dementiaphobia", the fear of people who are mentally ill. The stigmatization of major neurocognitive disorders, and of associated behavioural and psychological disabilities and symptoms, is what causes this fear and leads people to project into the future. As a result of this form of discrimination, they don't want to become those people who have been abandoned.

I would now like to clarify a few points. First of all, medical assistance in dying is not the same thing as advance medical directives. There is indeed a difference between requesting a form of care, such as medical assistance in dying, and refusing care one considers futile. Furthermore, medical assistance in dying is not like withdrawal of treatment. As in the distinction among first-degree murder, negligence causing death and an accident causing death, it is intentions that count, and intentions differ depending whether one is dealing with advance requests respecting medical assistance in dying or with withdrawal of treatment.

With respect to my recommendations, I believe that the government should protect the most vulnerable. It should also increase funding for work done to promote palliative, geriatric and geriatric psychiatric care. It should also improve access to that care by promoting essential jobs in those areas. Lastly, it should avoid "dementiaphobia" at all costs and avoid promoting it, contrary to what certain persons do who defend medical assistance in dying by means of advance directives.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Dr. Pageau.

I now turn the chair over to my colleague Senator Mégie.

[The Joint Vice-Chair, Hon. Marie-Françoise Mégie (Quebec, (Rougemont), GSI)]

Thank you, Mr. Chair.

I am Marie-Françoise Mégie, senator from Quebec and committee vice-chair from the Senate.

We will now begin the round of questions with Mr. Ellis.

You have five minutes.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you, Chair.

Thank you to the other committee members for allowing me to be here and be part of this fascinating conversation.

Thank you to the witnesses for being here this evening as well.

Dr. Iftene, I wonder if you might clarify this, please. Are you asserting that, because the penal system has such terribly poor conditions and access to medical care, this is the reason why MAID should be a part of the prison system? I wasn't quite clear on what your point was.

[Dr. Adelina Iftene]

It is not because the penal system has poor conditions; it is because of a right that's called the equivalence of care. As a result, all health care services that are provided in the community must be available in prison. That is not the case, unfortunately. We know there is substandard health care provided in prisons, so my argument was that the solution.... Of course, there is no real systemic palliative care available. Again, all that lack is breaching the requirement for equivalence of care between prison and the community. Prohibiting MAID in prisons is just one more failure on that part. From that perspective, I think that from an international and national standard, we have to provide prisoners with all the health care services that are available in the community.

I think the conversation is more complicated when it comes to people in custody, simply because there are concerns regarding their ability to provide consent on a free basis. I think that as long as we do not have compassionate mechanisms working for individuals who are experiencing limiting life circumstances or intolerable suffering—which lots of times are also associated with a very significant decrease in risk—as long as we don't have these mechanisms that allow them the option to be transferred to the community to make end-of-life decisions there, this conversation is going to be very complicated. I think it does raise issues—

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you, Dr. Iftene. I appreciate that.

Part of the difficulty, of course, then remains that without appropriate medical care in the penal system, moving on to adding things like MAID, to me, would seem to be somewhat difficult. Thank you for that.

I'll go to Dr. Lussier, if I may.

You talked about this obviously being very difficult, and I think your colleague Dr. Pageau perhaps brought some of the difficulties forward with respect to that. It would appear perhaps that you have different ideas. I wonder, Dr. Lussier, if you might comment on the length of time between making an advance directive and of course coming to that point in their life when it may be required. Are there difficulties with respect to that, sir? What safeguards might be needed to look at those things?

[Dr. David Lussier]

I think one of the safeguards has to be that you have to make sure that the person is aware of his or her diagnosis. This is why, for example, in Quebec, when this was discussed, it's always been said that it should be done after the person has been diagnosed with a major neurocognitive disorder. I today couldn't do an advance request for medical assistance in dying because I don't have any diagnosis for a neurocognitive disorder—so the person has to be aware.

The other safeguard would be that it would have to be reassessed. It would have to be reiterated several times in the process, so you can't just do it once and then it's applied or implemented five or seven years later. It would have to be reassessed and repeated several times to make sure that the person still wants the same thing.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you, sir.

Through you, Chair, to Dr. Pageau, are there any safeguards that you think would be beneficial here?

[Dr. Félix Pageau]

We have to make sure that people who have major neurocognitive disorders don't request medical assistance in dying merely because they're afraid of their own decline and want to avoid becoming a burden to their loved ones. That's often what we hear.

I'm somewhat concerned at the idea of a physician immediately proposing medical assistance in dying to a patient upon diagnosing a major neurocognitive disorder in a clinical setting. That might raise questions in the patient's mind; he might wonder whether the physician feels that his status is grievous enough for him to request medical assistance in dying. Imagine if I informed you that you have diabetes and then asked you whether you'd like to opt for medical assistance in dying. You might think diabetes is a very serious disease.

[The Joint Vice-Chair, Hon. Marie-Françoise Mégie]

Thank you, Dr. Pageau.

I now give the floor to Mr. Arseneault.

[René Arseneault, Liberal, Madawaska—Restigouche, NB]

Thank you, Madam Chair.

My first question is for Dr. Lussier and is along the same lines as the question my colleague Mr. Ellis asked.

Dr. Lussier, earlier you described it well when you said there is always a brief period following a diagnosis of neurocognitive disease when patients' minds and judgment are still intact and they can make a request for medical assistance in dying. Did I understand you correctly?

[Dr. David Lussier]

I was actually talking about the present situation. Yes, there is a moment when the decline is advanced and the disease is serious enough to be considered incurable. The person then meets the criteria. As a result, some people with neurocognitive disorders are currently receiving medical assistance in dying. That's already being done. There are many cases every year.

[René Arseneault, Liberal, Madawaska—Restigouche, NB]

Can you suggest any safeguards for those cases in particular. In your view, could we further improve that; could we be more cautious, or are the current safeguards appropriate?

[Dr. David Lussier]

Regardless of who has access to medical assistance in dying, we will always have to ensure that it is never requested for lack of appropriate treatment. Medical assistance in dying should never be chosen because patients suffering from a neurocognitive disorder don't have access to treatment appropriate to their condition. This currently applies in all cases, whether they involve cancers, physical disease or neurocognitive disorders. Consequently, we must ensure that patients are accurately diagnosed, that they are well supported when they request medical assistance in dying and that their request isn't made lightly for lack of other treatment.

[René Arseneault, Liberal, Madawaska—Restigouche, NB]

Those are obviously the safeguards we must aim for.

I don't work in the health field, but we've heard from many witnesses on this matter over a long period of time, and I don't believe I've ever heard anyone tell us about a patient who hadn't received adequate care and to whom medical assistance in dying had been suggested as a solution.

Have you seen that situation in your practice?