Medical Assistance in Dying Committee on May 9th, 2022

[The Joint Chair, Liberal, Marc Garneau]

I call the meeting back to order.

Welcome to the panellists. I'll take a minute to say a few things.

First, before speaking, please wait until one of the joint chairs recognizes you by name.

Second, I remind you that all comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly. This is for the interpreters. Interpretation in 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”. When you are not speaking, please keep your microphone on mute.

With that, I would like to welcome our witnesses for panel three this evening.

We have, as an individual, Dr. Romayne Gallagher, clinical professor of palliative medicine at the University of British Columbia; we have Dr. Lilian Thorpe, professor at the University of Saskatchewan; and we have.... Perhaps I should say this in French.

We are also welcoming Dr. Laurent Boisvert, who is a physician.

Thank you for joining us.

We will begin with the opening remarks of the three panellists. You will each have five minutes. Try to stay within those five minutes. We will start with Dr. Gallagher, followed by Dr. Thorpe and then Dr. Boisvert.

Dr. Gallagher, the floor is yours for five minutes.

[Dr. Romayne Gallagher, Clinical Professor, Palliative Medicine, University of British Columbia, As an Individual]

Thank you to the joint committee for allowing me to speak.

I'm a retired physician with over 25 years of experience in providing palliative care in all locations of care. I've been an attending physician and palliative care consultant to people with dementia, as well as physician director of long-term care and a physician leader in academic palliative care.

I cared for my elderly neighbour who wanted to stay in in her house where she lived alone, despite her dementia. She had no children or spouse, so we were her family. I was her power of attorney for the last four years of her life. She died at 96, having lived in the same house since she was eight years old.

With respect to advance requests for MAID, despite the compelling evidence of wanting to be able to make some choice, medical and social science literature reminds us that people are poor at anticipating what life would be like with a life-changing illness or disability. People adapt to illness and disability and adjust their needs for a decent quality of life. Many medical conditions have long and unpredictable courses. Suicidality caused by these conditions can last for protracted periods of time.

In jurisdictions where advanced requests are permitted, physicians have difficulty following advanced directives for hastened death because they cannot reaffirm consent and they cannot establish current suffering. Family members have the same conflicts and find it a burden.

I want to focus on the suffering of people with dementia.

People with dementia can self-rate their quality of life. We know that they consistently rate it higher than caregivers do. Cognitive abilities have little impact on their quality of life, but good relationships, social engagement and spiritual and religious beliefs help maintain quality of life. We do know, though, that losing functional ability, pain and depression can reduce quality of life.

A 2018 study of the lived experience of over 600 individuals with dementia revealed the importance of their physical environment and the people they interact with. A positive environment allows people with dementia to continue to participate in life, and it includes caregivers who facilitate retaining control and a sense of purpose. Through adapted physical environments like dementia villages, people with dementia can continue to walk outside and express their emotional, relational, spiritual and creative selves.

Technology can also aid in reminding them of their identity and memories. The fear of losing capacity and losing control over their lives may not be realized because they are still recognized and treated as a person.

Dr. Tom Kitwood was a researcher in maintaining personhood in dementia. He concluded that personhood is “a standing or status bestowed upon one human being by others.... It implies recognition, respect and trust.“ He described how our actions undermine the personhood of a person with dementia. These are actions such as conversing with others as if the person with dementia were not present, infantilizing, disempowering by not letting someone walk unsupervised, treating people like objects, and taking away control of every decision. It is our society's behaviour that contributes to the suffering of people with dementia and fuels the stigma supporting the idea that with dementia, a person dies inside a living body.

Those with money can buy adapted environments with supportive care. If we allow advance requests, those who can't afford adapted environments will have only an illusion of choice. They will choose between depersonalizing care or MAID.

Providing a palliative approach to care that focuses on maintaining quality of life and providing care that meets preferences of people is essential, yet a CIHI study in 2017 showed that only one in 20 people with dementia actually receives palliative care.

I wrote a brief to this committee that argues that those suffering without access to quality palliative care or who receive it only after they've requested MAID is a medical error. The error is not in receiving MAID, as the person may meet all the requirements. The error of omission occurs in the months before, when the pain, shortness of breath, anxiety and feeling of a burden to others began but was not recognized and addressed. This is an error, because we know that palliative care can help with this and improve quality of life.

Every chronic disease organization recommends timely access to palliative care. I want one of you to ask me how the federal government could achieve greater access to palliative care.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Doctor. We need you to wrap up.

[Dr. Romayne Gallagher]

Okay.

Parliament has voted three times in favour of funding a palliative care strategy. It's 2022, and it's yet to be implemented. Canadians will suffer with life-limiting illnesses whether they access MAID or die naturally. They are counting on all of you to ensure quality and timely palliative care, and to ensure that it's provided to all Canadians.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Gallagher. We'll now go to Dr. Thorpe.

Dr. Thorpe, you have five minutes.

[Dr. Lilian Thorpe, Professor, University of Saskatchewan, As an Individual]

Thank you very much.

Thanks for the wonderful presentations I've heard so far.

I'd like to say I'm a geriatric psychiatrist. I see and work with people with dementia. I very much agree with many of these comments about personhood and developing environments where people can live productive and quality lives, even in dementia.

I think it is very clear that most people I know do want to have access to advance requests for MAID. I also think this is going to be really challenging. We're going to have to really think about those guidelines and how we're going to do this.

First of all, people really do change. I see people in hospital with my consultation service who years ago made an advance directive that is often not what they want anymore. They say, “That was then. This is now.”

People change. People don't necessarily understand what they adapt to over time, which is what Dr. Gallagher spoke to. Many really do change, and they adapt to stages in their lives, such as dementia, that they wouldn't have expected before.

These people are not necessarily the same people who asked for this. I think what we do in real life is look at balancing the current person with all of their needs. Somebody with a dementing process needs a lot of help with what they previously wanted. It's a balance. That balance is often discussed within a mixed group of people who then really think about all the issues that have to be thought about in making a very complex decision.

Practically speaking, I think in some cases it's going to be fairly straightforward to approve an advance request if a person still has some ability to say what they want. I mentioned that I've seen close to 700 MAID assessments. I am a MAID assessor and provider. Many of my patients with dementia in early stages do still have some ability to say what they want. Some of them do talk about wanting to have access to MAID. When they're in that early stage, even if they don't have fully informed consent, they may have assent. Those ones, I think, will be the ones we can deal with.

There are people who are in a chronic vegetative state at the end. They may not be suffering anymore, yet we will also find those reasonably doable for us as providers. We will find that we feel we can live with this.

The problem comes in people who have this gradual loss of capacity and insight into the dementia. My patients often say, “Actually, I don't feel so bad anymore. I'm not even sure I have dementia anymore”, as they progress. They may enjoy their environment. They no longer focus on developing dementia, because they don't really know they have it anymore. Those will be very difficult for us to deal with, as would those who develop a lot of agitation and resistance. It's hard to even get them to take their medications, let alone large amounts of oral medications for MAID, or get an IV started for MAID. Those will be highly difficult, and this would be highly traumatic to both family members and care providers.

I have a number of suggestions, and I put them in my written report. I think that in straightforward situations, such as when a person is making a suggestion consistently that they do wish to die, as will happen sometimes, or when a person is in a chronically vegetative state and their advance request is sufficiently detailed to support the situation, these requests could be approved by the usual trained and objective MAID assessors.

There are, however, going to be far more complex situations in which there is no consistent communication from a person saying they wish to die, or there is a lot of conflict among family members about whether the advance request was really going to be consistent in the current situation. In these cases, I think there needs to be a very different process with consultations with some of us, such as geriatric psychiatrists—as is my practice—a geriatrician, psychologists and so on. I would like to see evidence of ongoing, significant suffering, and no evidence that the person is actually consistently enjoying life. If a person is consistently enjoying life and enjoying activities, I would feel very uncomfortable with that as a MAID provider. I would like to see no resistance of any kind to the MAID assessment or provision, with people trying not to have the IV started or to take oral medications. I don't think any of us would feel comfortable then.

I think what this means is that we need interactive meetings among the care team, family members, health proxies and MAID assessors and that we work through this. Maybe there is an ethics issue there. Maybe there are a number of people, not just one or two, making these complex decisions. Maybe social work is there to help with counselling of family members who are very distressed.

I will just tell you that we do have a waiver of final consent. I've had two daughters sobbing in talking about this waiver, because they say they would feel like they would be killing their father. Those patients who have had conflictual relationships with family members are going to be the most distressed by this. There also needs to be an appropriately constituted end-of-life committee that could look at these complex cases. These are going to be really hard, and we're going to have a lot of discussion about this.

That's what I'm going to say. I'm sorry. It's very practical. I'm not going to be able to tell you all of the details in the other countries. I'm just talking to you about myself as a geriatric psychiatrist and someone who sees patients day in and day out. I wanted to talk about those practical aspects.

Thank you for having me.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Thorpe.

Dr. Boisvert, you now have the floor for five minutes.

[Dr. Laurent Boisvert, Physician, As an Individual]

I'd like to begin by thanking the Special Joint Committee on Medical Assistance in Dying for inviting me to testify in connection with its efforts to address the issue of advance requests for medical assistance in dying.

My name is Laurent Boisvert, and I'm a physician who specializes in family medicine. I worked as a general practitioner and emergency specialist for 35 years, and as a professor at the university-affiliated centre on Montreal's South Shore.

When the Act Respecting End-of-Life Care Came into force in Quebec in 2015, I made sure that medical assistance in dying would be available not only in institutions, but also elsewhere. I have been actively practising medical assistance in dying for seven years, which represents some 400 cases of euthanasia.

Before addressing the issue of advance requests, I would like to describe two cases of individuals with dementia for you.

I would like to begin with Mr. Yves Monette's case. I've used his name, because his story has been heavily covered by the media. Mr. Monette had frontotemporal degeneration, leading to varied atypical symptoms. In addition to temporarily losing control of his members, he would sometimes take a shower with his clothes on or go and take a walk outside in his nightshirt. Although he had formerly been very active and happy, a martial arts instructor and a security guard, he was now ill, isolated and unable to do anything. His life had become insignificant to him. He asked for medical assistance in dying many times, but owing to the legislative context at the time, meaning before March 2021, he was no longer eligible. The disease nevertheless made his life increasingly difficult.

I met him in April 2021, after reading a newspaper article about him. When I met him, I confirmed that his request was admissible, but as his death was not reasonably foreseeable, there would be a waiting period of 90 days. He immediately accepted, happy to know that he would no longer have to suffer this form of existence. In the same breath, he asked to donate his organs, because he was otherwise in excellent shape.

We met on several occasions, and he never changed his mind about his decision. Despite his dementia, he was capable of clearly reiterating his request until the very end. That's not the case for many people with this type of illness, as we will see in the second case.

He died serenely, although he was sad to go. He was surrounded by several friends and relatives. He was dressed in a uniform loaned to him by the Longueuil police and was wearing boxing gloves.

I now like to tell you about Ms. C, an 84‑year-old patient. She had always been active and happy, a mother who lived with her spouse. I met her in May 2021 in connection with her request for medical assistance in dying.

The previous fall, at a family gathering, Ms. C's children had noticed some bizarre behaviour. She was somewhat uninhibited, even though she had always been very prudish. She also said some things that were incoherent, but it was not too noticeable. She met her family doctor with one of her daughters and her spouse. After some examinations, she was diagnosed with Alzheimer's, a form of dementia, which was no surprise to anyone.

When I met the family, the patient understood her disease and explained why she did not want to stretch out her life uselessly until she would lose her autonomy in terms of everyday activities, and become a burden to her spouse and her family. She fully understood the nature of her request and its irremediable consequences, but wanted to take advantage of life for as long as possible. She therefore did not specify a date for receiving medical assistance in dying.

I told the patient and her family about the act and its limitations. The patient would have to be able to consent to medical assistance in dying until the decision was made to request it. That meant that she would have to be very closely monitored, because once it was becoming obvious that she was no longer capable of expressing her wishes, it would be necessary to proceed with medical assistance in dying. However, and here's the problematic issue, the current legislative framework would force us to steal some quality time from this patient and her family.

I told her family doctor about the situation and we monitored the patient closely, who remained capable of clearly stating her wishes for a while. However, everything changed quickly in only a few weeks. The patient saw her family doctor, together with her family, and she was no longer able to clearly state her wishes. She was confused, disoriented and even incoherent. She was no longer capable. As a consequence, she could no longer receive medical assistance in dying and would have to go through what she specifically did not want to put her family members through. Her illness led to a gradual state of decline. Her family members no longer recognized her and even worse, sometimes had to deal with a person who could be aggressive and unpredictable, or even a curled‑up body that could no longer interact with the outside world.

With respect to advance requests, I agree with Dr. Alain Naud, who presented his views to you along with those of the Collège des médecins du Québec, to the effect that the act should enable a patient, who has received a diagnosis of confirmed neurocognitive disorders or dementia, to submit an advance request for medical assistance in dying. This binding request, that no one can challenge, would have to specify application criteria, meaning the clinical status that would trigger the procedure. Only patients are able to specify what they are willing to put up with, what is unacceptable to them and what they would define as an unacceptable decline.

Enforceability would have to be defined and established by the appropriate health care authorities.

Enforcement would have to provide the possibility of an appeal by one or more proxies designated by the patient at the time of drafting the advance request. These would be responsible for triggering the procedure, together with the care teams, at the moment specified in the request.

In the absence of family members involved in the advance request, appropriate authorities would provide a recourse mechanism to trigger the procedure. In Quebec, the public trustee, who is a party to the levels of care, could perform this role.

Thank you for your attention and I hope you are courageous enough to move this important matter forward with a full understanding of the issues.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Boisvert.

We're now going to move on to the round of questions.

I'm going to turn the rest of the meeting over to the co‑chair, Senator Martin.

[The Joint Chair, Hon. Yonah Martin]

Again, thank you to the witnesses.

We'll go to the first round of questions from the House.

Mr. Cooper, you have five minutes for your questions.

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

Thank you very much, Madam Co-Chair, and thank you to the witnesses.

I'm going to address my questions to Dr. Gallagher.

In the last panel, Dr. Downie said that it would be illogical not to extend advance requests—there are already advance requests in the context of MAID in some limited circumstances—that advance decisions, including those about the withdrawal of life-sustaining treatment and other medical interventions are already available to patients if they choose, and that the safeguards in place for those advance decisions could quite easily be adopted in the case of advance requests for MAID.

What are your comments on that, Dr. Gallagher? Could you expand on that?

[Dr. Romayne Gallagher]

Thank you very much for the question.

I heard that comment. I think there is a huge challenge because of things I mentioned in my commentary. We know from about 30 or 40 years of research into effective forecasting that people tend to think things will always be worse in the future than they actually will be. We also know that people adapt as well.

I think it's very different from saying, “I'm nearing the end of my life. I want assisted dying over the next few days, but, if I should lose my capability, these are my wishes.” The average lifespan of people after a diagnosis of dementia is up to five years. In the case of the idea Dr. Downie mentioned—“If I don't recognize my family for two weeks, you can terminate my life”—how are we going to compel doctors to do this?

This is going to be an extremely challenging thing to work out. People change doctors, locations and provinces. This is going to be a nightmare, and I don't see how arranging a deal with one provider will last through a long trajectory of illness.

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

Dr. Downie seemed to present it as though it would be very easy: You would sit down and work out this arrangement, and you would discuss intolerable suffering. Of course, you're not experiencing that intolerable suffering, so you're discussing it beforehand, without living it. Somehow, however, according to Dr. Downie, this will result in a written request that will be able to speak for that patient without needing the guidance of a third party, because it could all be assessed objectively to determine whether or not the patient's wishes could be carried out.

What are your thoughts on that?

[Dr. Romayne Gallagher]

I think it would be incredibly challenging. My work in long-term care has taught me that usually people who arrive in long-term care will often last longer than you think. It will be more complicated than you think. Trying to make it out as a simple exchange between two people is bound to be complicated.

I think Dr. Ferrier, in the previous session, mentioned how complicated it gets with blended families, with people who have different ideas about wills, and so on. It really does complicate things, particularly when people have a previous strained relationship with the patient.

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

Thank you. I'm out of time.

[The Joint Chair, Hon. Yonah Martin]

You have about 20 seconds.

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

Is there anything else you'd like to add in those 20 seconds, Dr. Gallagher?

[Dr. Romayne Gallagher]

I was hoping someone would ask me, but I can't do it in 20 seconds.

It's about how we could improve palliative care because, through accreditation, we could expand standards and screening for distress throughout all chronic diseases. That is the way to enforce this: through accreditation. It would make a huge difference.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Dr. Gallagher.

Next we have Mr. Maloney for five minutes.

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

Thank you, Madam Co-Chair.

Thank you to all of our witnesses. This is a challenging discussion, but it's one we must grapple with.

Dr. Gallagher, I'm going to ask you one question.

You started by saying that literature shows that people are poor at anticipating change. Is there any scenario in which you think advance requests for medical assistance in dying would be appropriate, or do you rule them out entirely?

[Dr. Romayne Gallagher]

I tend not to base things on one case or the rare case or things like that. I think we have to make policy that will manage for most Canadians. I often think, as we do in medical situations when we talk about benefits and risks, that it's very compelling to say, “Gosh, take me out of here.” I used to think like that when I hadn't spent much time in long-term care. I'd just pop in, and I'd think, “Oh my God, this looks terrible”, but when I worked there I found it was very different, so I—

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

Thank you, Dr. Gallagher. I don't mean to interrupt; it's just that I don't have much time.

The answer is no. Is part of that because it's your view that once people enter a certain state, they're not able to provide their consent?

[Dr. Romayne Gallagher]

It's partially because of that, but it's also because they may not have the same degree of suffering and they may have adapted to things. It's extremely hard for someone else to judge, particularly when people are unable to communicate as well as they used to.

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

I'm going to ask this question to the other two panellists.

In terms of consent, informed consent is a legal concept. It is designed to protect patients, but what we're talking about is real-life personal decisions that people have to make about their own health. My question is this: Would you not say that people can make an informed decision to request MAID, knowing that when it's time to be administered, they don't have the capacity to change their mind?

[The Joint Chair, Hon. Yonah Martin]

Dr. Thorpe, go first.