Medical Assistance in Dying Committee on Oct. 21st, 2022

[Julie Campbell]

Thanks for the question.

Patients with chronic life-limiting conditions, such as ALS and COPD, are less likely to be identified. Even less likely to be identified are the frail elderly or patients with dementia.

It is really important to see patients for the whole of who they are and to see all of the complexities of their conditions added together to consider where they are on the trajectory of life and to identify early when we can intervene with palliative care to give them the best quality of life.

[Marie-Françoise Mégie]

Thank you, Ms. Campbell.

My second question is for Dr. Zan.

If I understood correctly, you have worked in geriatrics, but you are now also working in palliative care and you have administered medical assistance in dying.

In light of the definitions and criteria, I would like you to help us better understand what the difference is between continuous palliative sedation and medical assistance in dying.

[Dr. Nathalie Zan]

Are you talking about the eligibility criteria?

[Marie-Françoise Mégie]

Yes.

In fact, what is the role of each of these types of care? Things often get confused: people think that offering continuous palliative sedation to someone in palliative care kind of amounts to administering medical assistance in dying.

I would like you to clarify that.

[Dr. Nathalie Zan]

That is entirely different.

Personally, I have never administered palliative sedation.

In general, medical assistance in dying is a rapid process that is meant for patients who are fully aware of their situation and their choice. Palliative sedation can be a patient's choice too, but it can also be administered when the patient is no longer conscious. Sometimes it is a family's choice.

I have administered medical assistance in dying much more. Ending their life this way is truly a patient's choice. Administering this care is entirely different.

I imagine that palliative sedation can be administered more in a context of palliative care. When the medication becomes insufficient, palliative sedation can be the next step in palliative care.

In the context of medical assistance in dying, at least in my experience, I imagine that the two practices could be interchangeable. The fact remains that the patient consciously chooses to receive medical assistance in dying. It is a specific moment during which the care is administered.

That is how I would summarize the question, although I have never administered palliative sedation.

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

I will now give Senator Dalphond the floor for three minutes.

[Pierre Dalphond, Senator, Quebec (De Lorimier), PSG]

Thank you, Mr. Chair.

My question is for Dr. Zan.

Statistics show that at least 82% of people who receive medical assistance in dying were receiving palliative care before that.

In your experience, are there people who are receiving palliative care and request medical assistance in dying who decide not to act on their request, or does medical assistance in dying always end in it being administered at some point?

When they decide to receive medical assistance in dying, is it because they feel that the qualify of the palliative care is insufficient or because they want to choose the end of their life themselves rather than waiting for the family to choose continuous palliative sedation for them?

[Dr. Nathalie Zan]

In my experience, in a majority of cases, patients who had received palliative care and wanted to receive medical assistance in dying received both. It was a decision that came after consideration.

A patient who is in the terminal phase, for example, can be admitted to palliative care and receive care as their condition changes. Often, these people are already considering medical assistance in dying. We then discuss that possibility together, at the same time as they are receiving the usual palliative care. Sometimes, these people change their mind, but in a large majority of cases they do not change their mind. The large majority of people who maintain the wish to receive medical assistance in dying do receive that care, even if they are simultaneously receiving palliative care.

[Pierre Dalphond]

Some witnesses have said they are afraid that people receiving palliative care ask for medical assistance in dying at a time when they are depressed, that their existential problems are not addressed and they are given medical assistance in dying.

When you do the assessment, do you take that into account?

[Dr. Nathalie Zan]

We always take it into account. There may be situations like that. However, in my experience in palliative care, it is a request that has been thought about, often for a long time. So it is a process that takes shape in the person's mind.

Have I encountered situations in the past when the person was unable to receive palliative care? Yes, of course, that has happened. However, as you say, in a majority of cases, in about 80%, the patients receive both types of care, and that is what we want: we truly want everyone to have access to both options.

Some people may have made the decision after thinking about it for several years, while others arrive at this conclusion because they are suffering too badly in spite of palliative care. I would remind you that suffering can be psychological, also. Waiting for death is psychologically very difficult for some people, so they decide to turn to palliative care. While the usual palliative care relieves pain and symptoms, existential suffering is more difficult to relieve, even when the palliative care is optimal.

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

We will now continue with Senator Martin.

Senator Martin, you have three minutes.

[The Joint Chair, Hon. Yonah Martin]

Chair, Senator Wallin is also online.

[The Joint Chair, Liberal, Marc Garneau]

Okay. I didn't pick that up, so—

[Pamela Wallin, Senator, Saskatchewan, CSG]

I've come late, so I'll participate in the next section. Thank you.

[The Joint Chair, Hon. Yonah Martin]

Okay. Thank you. I thought your camera had just come on.

Thank you, Mr. Chair, and thank you to all of our witnesses.

My question is for Mr. Ross.

Mr. Ross, for the government to improve access to palliative care, does palliative care need to be recognized as an essential service in the same way that MAID is? What would the federal government's role be in that?

[Derek Ross]

I think it is so important that to the extent that there are gaps.... We understand there are gaps, especially between urban and rural regions, for example. There are some questions about when palliative care is considered an insured service versus an extended service, and I think clarity is needed on those questions to ensure uniformity and consistency in the provision of palliative care. That might be something that needs to be done in conjunction with the provinces, but there's still a role for the federal government to play in ensuring that there is consistency.

This goes to Senator Dalphond's question about those who change their mind because of palliative care. The third annual report that we have from Health Canada provides some information in that regard. It tells us about the reasons why individuals withdrew their request for MAID. It specifically tells us that in 38.5% of cases where individuals withdrew their request for MAID, it was because palliative care measures were sufficient. By my calculation, that's 88 people in 2021 alone who withdrew their request for MAID because palliative care measures were sufficient. How much more would people be informed by broader and wider access to palliative care across the country, where we see these discrepancies?

Another area of focus that the federal government can emphasize is research. They can fund research and get more information, data and standards about these issues. They can work with the provinces to improve training for medical students and other health care professionals so that there's greater awareness of what palliative care does, especially, as I mentioned, in the area of pediatrics, where many regions don't have specialized pediatric palliative care. It's so crucial, I think, for this to be emphasized moving forward.

[The Joint Chair, Hon. Yonah Martin]

I think you've touched on my second question: More broadly, what should the federal government do to improve access to care?

After hearing about the specialized care, I see that's quite concerning too. Do we have enough specialists to address the very specialized palliative care that would need to be offered?

[Derek Ross]

Yes, that's exactly right.

Again, I think a lot of people, me included, have a lot of misconceptions and misunderstandings about what palliative care is. I think a lot of people assume that it's just this last-minute attempt to help people. It's something that really does a lot for a lot of people at various stages of life with various conditions.

There needs to be greater awareness of this as an option so that individuals know, especially those who are struggling with some of these decisions, that they have options available to them other than MAID. For those options to be realized, it's crucial that we have funding, infrastructure, training and public awareness so that this is emphasized and prioritized. Ultimately, all of us involved in the discussions on these issues have different approaches and different ideas, but we all share a commitment to wanting to help people who are suffering.

That's what everyone here wants to do. How do we best support individuals who are suffering? We need to ensure that we give them the support to live with dignity and that the option is available to them. I think that's where this emphasis on palliative care is especially important.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Senator Martin.

This brings our panel to a close. I'd like to thank Ms. Julie Campbell, Dr. Nathalie Zan and Derek Ross from the Christian Legal Fellowship for appearing this morning at an early hour to provide their views and answer our questions. We very much appreciate that in the context of our review and examination of palliative care and where medical assistance in dying might fit in with that.

With that, we will suspend briefly and prepare for our second panel. Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Welcome to the second panel and welcome to our witnesses in particular.

I have just a few little reminders. 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. This will help the interpreters. Interpretation is available in three options: floor, English and French. When you're not speaking, please mute your microphone.

With that, I would like to welcome our witnesses for panel two. We are here to discuss the issue of advance requests primarily.

We welcome Serge Gauthier, emeritus professor, as an individual, who is joining us by videoconference.

We welcome Nancy Guillemette, member of the Government of Quebec, also by video conference.

Pending his arrival, hopefully soon, we'll have Dr. Sandy Buchman, chair and medical director of the Freeman Centre for the Advancement of Palliative Care at the North York General Hospital and past president of the Canadian Medical Association.

Thank you for joining us.

We will begin with opening remarks.

We will begin with Dr. Gauthier, followed by Ms. Guillemette and, we hope, Dr. Buchman, who should be joining us shortly.

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

[Dr. Serge Gauthier, Emeritus Professor, As an Individual]

Thank you, Mr. Chair.

Good morning, everyone.

I am a neurologist specialized in the diagnosis and care of persons living with dementia, Alzheimer's disease in particular.

Over the years, many persons without symptoms but at risk of dementia in the future because of their family history, or with mild symptoms, spontaneously asked during office visits whether they can write advance requests for medical assistance in dying if they reach a certain stage of their condition. Some even signed a document, with their spouse, written with the help of their family, knowing that the document was not yet valid. Some persons even said that if they did not have the option of giving advance directives in order to receive medical assistance in dying, at a predetermined stage of a disease like dementia, they would seriously think of suicide at the time they received that diagnosis. I would add that there is medical literature on this subject. There is thus a real need expressed by a segment of the population that is openly discussing this with family members.

The difficulty I foresee is not so much the fact that these persons have to write a document with the help of the family or a notary, for example. Rather, it is the clarification of which stages of dementia might create problems when their advance choice is put into effect.

Allow me to explain in greater detail.

There are very advanced stages in Alzheimer's disease. No one wants to live until the very severe stage, defined as absence of verbal communication and independent ambulation, double incontinence, and very high risk of aspiration pneumonia. This is a terminal stage of dementia in which death is expected within 12 months.

On the other hand, if a person expressed a desire to receive medical assistance in dying before that terminal stage, but after being declared incompetent, in other words, at a moderate to severe stage of dementia, it might be harder to obtain a consensus between the designated representative and the clinical team once the disease has progressed to the preselected stage.

Finally, after receiving a diagnosis of Alzheimer's disease, a person might decide to receive medical assistance in dying while still competent, thus in a mild stage of their condition. At that stage, I believe the person's choice is clear and valid.

To start the dialogue with the committee, I ask it to consider the stages of the disease in their deliberations and help people to plan for carrying out their choice at the appropriate time.

Thank you for your interest in this important issue.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Gauthier.

Ms. Guillemette will now have the floor for five minutes.

[Nancy Guillemette, Member for Roberval, Government of Quebec]

Mr. Chair, Madam Chair, vice-chairs, members of the Special Joint Committee on Medical Assistance in Dying, thank you for allowing me time to speak today.

My name is Nancy Guillemette. I am a Coalition avenir Québec MNA and I represent the electoral district of Roberval. I chaired the proceedings of the Select Committee on the Evolution of the Act respecting end-of-life care.

As you undoubtedly know, the Act respecting end-of-life care came into force in Quebec in 2015. Since then, the Commission sur les soins de fin de vie has monitored requests for medical assistance in dying. Quebec society is thus able to monitor changes in the number of deaths and have a realistic picture of the situation, and make sure that the requirements for administering medical assistance in dying are met. We can also assess and better understand the suffering of people who obtain medical assistance in dying.

In order for Quebec to continue to progress in this area, the Select Committee on the Evolution of the Act respecting end-of-life care, the transpartisan committee that I chaired, was created in March 2021. The select committee's mandate was to examine the issues related to extending medical assistance in dying to persons who are incapable of caring for themselves and those who are suffering from mental disorders.

In the course of our work, which represented over 200 hours of consultations and discussions, we met nearly 80 persons and organizations. There was also an online consultation that allowed Quebeckers to express their views. Our work was guided by three broad questions. First, may persons who are not capable of consenting to care obtain medical assistance in dying, in particular by making an advance directive? Second, should persons whose only medical condition is a mental disorder have access to medical assistance in dying? If so, what criteria should apply to extending access to medical assistance in dying to such persons?

The select committee submitted its report on December 8, 2021. It is important to note that the 11 recommendations in the report were made unanimously. They reflect how the public's perceptions of medical assistance in dying in Quebec have evolved.

The members of the select committee recommended that persons with a serious and incurable illness leading to incapacity be able to make an advance request for medical assistance in dying. The recommendations also sought to guide and circumscribe the concept of free and informed decision, clarify the role of the trusted person who would communicate the sick person's request when the time came, and guide the intervention and support the doctor.

However, the select committee members noted that there was no social consensus concerning the incurable and irreversible nature of mental disorders. We therefore recommended that access to medical assistance in dying not be expanded to persons whose only medical condition is a mental disorder. The select committee members were of the opinion that the subject is much too important not to obtain social consensus.

The Government of Quebec acted on the select committee's report by introducing a bill, in May 2022. The bill proposes that persons who have a diagnosis of a serious and incurable illness leading to incapacity, and persons with a neuromotor disability, be given medical assistance in dying. The bill refers to neuromotor disabilities, but, since the select committee did not consider that subject, I will not address it today.

Unfortunately, parliamentarians did not have time to complete the parliamentary committee's work before the election was called in Quebec. The bill is therefore to be reintroduced in the new legislature, the one that is starting now.

Quebec has always been a leader in the vanguard of medical assistance in dying and end-of-life care. We want to continue to progress, but we want there to be a consensus among the Quebec public.

Thank you for your attention.

I am now prepared to answer your questions.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Ms. Guillemette.

The clerk confirms that Dr. Buchman is still not present at the meeting. Let us hope he will join us shortly.

I will now give the floor to Senator Martin, who is co-chairing the meeting with me.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

Thank you to both of our witnesses this morning. Your testimony will take us into this next questioning period to draw out more insights and what you have to offer us.

Our first five minutes will be for Madame Vien.

Madame Vien, you have the floor.