Medical Assistance in Dying Committee on Nov. 1st, 2022

[Prof. Peter Reiner]

Yes. I think that's quite reasonable.

As I understand it, ultimately the decision to provide MAID is going to rest with the MAID provider. The point of all of the recommendations that I put forward here, which came out of suggestions from MAID providers, is setting up the structure so that they are confident they are doing the right thing at the right time.

I don't think we want to add more work and burden on them. I think the idea of a designated decision-maker who acts as a support person for ensuring that the providers know it's the right time to do what they need to do is what we should have.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Professor.

Next we'll have Mr. MacGregor.

You have the floor for five minutes.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you very much, Madam Joint Chair.

Dr. Perrot, I'd like to start with you.

On this concept of relieving people's suffering and the existential dread they have when facing end of life, we know that a major reasoning behind the amendments in Bill C-7 in the previous Parliament—the waiver of final consent—was to allow people to have a little more peace of mind. If they were diagnosed with an incurable disease that was on a downward decline, they at least could give final consent before worrying about a loss of capacity.

You talked about how allowing for advance requests would allow that as well for other patients, to relieve their suffering and any existential crisis they may have regarding a future loss of capacity. Can you fill us in with a bit more detail on that, please?

[Dr. Chantal Perrot]

Sure. I think the main difference is that with Audrey's amendment in Bill C-7, the person has to have set a date for MAID. Many patients don't want to set a date for MAID yet, but they can't sign that waiver of final consent until they have set a date for MAID.

What patients are asking for is to be able to have an advance request that they could, in the event that they become incapable before they're willing and ready to set a date for MAID.... That's what would relieve their anxiety and suffering. I have many patients who would like MAID six months or a year down the road, but they don't know exactly when and they feel stuck.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

You would say that's been negatively affecting their life, having to weigh the decision that's before them?

[Dr. Chantal Perrot]

Absolutely. There were two patients I met with yesterday. One is a 72-year-old man with chronic pain and vascular dementia. He's living quite happily, but he wants to know that if he had a stroke next week he would be able to have MAID. However, he doesn't want to set a date for MAID. He's not suffering intolerably yet, so he wouldn't meet the criteria. He's not able to....

Another is an 85-year-old woman with terminal cancer. What she's living with kind of boggles my mind. She also doesn't want to set a date. She knows that if she develops brain metastasis, she is quite likely to lose capacity. She wants to be able to set an advance request. She's somebody I will stay in close contact with, because I am concerned about her losing capacity. I want her to have the choice of MAID, but she's just not ready to set a date for MAID.

It would really make a difference for people like that.

I'm providing MAID for a woman in a couple of weeks. I first met her a year and a half ago. What she really wanted was an advance request. Her past year and a half would have been much more peaceful had she known that, in the event of incapacity, she would be able to receive MAID. Now that she has set the date and has a waiver of final consent, she's happy. She's much more at peace.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Professor Reiner, I'd like to turn to you now.

I appreciate the five key points that you asked our committee to pay attention to: the list of specific circumstances, a regular update of wishes, why each circumstance would constitute suffering, discussing decisions with the family and also providing some context when things don't go according to plan.

A lot of our witnesses talked about the present self making decisions for the future self. I'm wondering, as a professor of neuroethics, how you have approached that particular argument. We had a lot of people talk about how their present self....

I may not fully understand, as a 43-year-old, what my 75-year-old self would want. Therefore, how could I properly make the decisions for 75-year-old Mr. MacGregor? Can you lend some of your expertise to that conversation?

[Prof. Peter Reiner]

Yes, I'd be happy to address this.

It's about autonomy. It's about how we project our autonomy. Really, what advance requests do is project our autonomy into the future, into the person that we will become. We know that we change all the time, from day to day. You are changed by my words in some way at this moment. It's not that we are fixed people at any time in our lives. It's really a matter of this question: If somebody is to decide for me when I am in this debilitated condition at some unknown time in the future, who best is in a position to make that decision?

I think that as a scholar of the neurobiology of autonomy—because I've published on it extensively—I would say that clearly it is me, but there is also a penumbra of autonomy that exists in the reality where we're not quite as atomized individuals as we think. That's where the family and friends and other people come in, and including them in that discussion is very important. However, the decision should properly rest with me.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you for that.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much.

At this time, I will hand this over to my joint chair, Mr. Garneau, for questions from senators.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Martin.

We're going to start with Senator Mégie.

You have three minutes.

[Marie-Françoise Mégie, Senator, Quebec (Rougemont), ISG]

Thank you, Mr. Chair.

I have a question for Dr. Gibson.

You said earlier that the patient had to describe the circumstances for initiating the process. In other words, the person indicates when it should happen. For example, it could be when they no longer recognize their family.

You also said that some of your patients need to be assessed every three months. Who assesses them? Is it the physician who did the initial assessment and determined that the person was eligible for medical assistance in dying or could be after being diagnosed with dementia? Is it this assessor who should see the person every three months to determine if they want to continue with the request for medical assistance in dying?

[Dr. Jennifer Gibson]

Madam Mégie, I think it may have been Dr. Perrot who was talking about the iterative process of checking in with her patients, but I'm happy to touch on this point because I think it's really important. One of the reasons we may want to set up a regime—whether it's legislative or regulatory, or whether it's a focus on clinical guidelines—to have regular check-ins with patients who might have made an advance request is to confirm that the terms and conditions of that request continue to be current. As we see, especially with longitudinal neurological conditions, there could be changes, life experience changes. As Dr. Reiner actually pointed out right now, our views may actually change over time.

Being able to have those checkpoints is an opportunity for confirmation and affirmation, but as I learned from Dr. Poirier, who spoke at a recent committee meeting, also reinforced by Dr. Perrot, there are, depending on where patients may be in the trajectory of their illnesses, more frequent check-ins or reassessments, and reaffirmations may be both valuable and welcomed, especially for patients who may be concerned and want to ensure that their conditions are in place and that their advance requests will be honoured.

We need to be able to find a way to ensure that we have mechanisms in place for that iterative reaffirmation without constraining patients or the care providers who are working with them to a set of guidelines that is so strict that it doesn't acknowledge and doesn't follow the trajectory of particular patients in the circumstances of their illnesses, where it's their affirmation of their continued advance request that needs to be confirmed.

[Marie-Françoise Mégie]

I apologize for putting those words in your mouth.

I'll turn to Dr. Perrot.

Do you have enough resources to do this assessment every three months? Is it something you've done before? I'm talking about similar assessments that you might have done in other circumstances, of course, since nothing has been adopted yet for advance requests. How do you see that?

[Dr. Chantal Perrot]

I think there has been a misunderstanding about my three-month re-evaluation. That comes when I'm actively assessing a patient for medical assistance in dying. That's completely separate from an advance request.

An advance request, I think, should be reaffirmed every three to five years; whereas, if I'm assessing a patient for MAID who is not ready to set a date for MAID yet, I will check in with them in three months' time to see to where they are in their illness process. Usually, when patients contact me for MAID, they're closer to end of life and their conditions are more fragile and unstable, so I want to make sure that I catch them, if they want MAID, at a time when they're still able to proceed with it.

I apologize for that misunderstanding.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Mégie.

[Marie-Françoise Mégie]

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Go ahead, Senator Dalphond. You have three minutes.

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

Thank you, Mr. Chair.

Dr. Reiner didn't really answer my colleague Mr. Thériault's question, but I'll ask Dr. Perrot the same question.

You've sort of defined advance directives, but I'm not sure what you mean when you talk about directives being given 15, 20 or 25 years before the event. Are you talking about cases where a person gives an advance directive that they want to receive medical assistance in dying if they have a heart attack or end up in this or that condition, which could happen 20 years later, for example?

Other experts have told us that we need to focus on dementia and irreversible neurocognitive diseases instead. That's what Canadians seem to be concerned about. In these cases, isn't a diagnosis needed beforehand so that the information and reflection process can be initiated, and the person can give advance directives indicating very precisely at what stage in life they want to receive medical assistance in dying?

Dr. Perrot, did you hear the interpretation of what I just said?

[Dr. Chantal Perrot]

Was that question for me? I thought it was for Professor Reiner.

[Pierre Dalphond]

No. I said that he did not answer the question, so I ask the same question of you. I can repeat it in English.

You sometimes refer to 15 years or 20 years ahead of the condition, which seems to indicate that I could do it and say, if I had a car accident and I remained brain damaged, I could receive MAID. Other experts have said that it should be limited to neurocognitive diseases. Therefore, once the diagnosis has been given that you're suffering from Alzheimer's and you still have the ability, you can inform yourself, you can talk with the consultants, you can talk with your team and then start planning, if you want it, at what stage, defined precisely, you should receive it.

[Dr. Chantal Perrot]

I think an advance request should be able to be made for anybody, whether they have a diagnosis of an illness or not, because, with some illnesses like cancers with brain metastasis or dementia, you can be pretty certain that, at some point, there's is going to be a loss of capacity.

Any of us could lose capacity tomorrow through a stroke, a heart attack, a car accident or whatever. I personally would like to be able to have an advance request for MAID, and I have clearly delineated the criteria that I would want to be met in order for me to have that, and I have that in my advance directive for if and when it becomes legal.

I think that's really important, so yes, I don't think it should only be for neurodegenerative conditions.

[Pierre Dalphond]

Then, if I understand properly, what you're saying is that, since that might be over a long span, it should be reaffirmed or reassessed periodically every three to five years.

[Dr. Chantal Perrot]

Absolutely. I think one should rewrite or reaffirm an advance request, the same way that I think we should do that with wills and powers of attorney in general, to make sure that our wishes are consistent.

To Mr. MacGregor's point, his 45-year-old self may not know what his 75-year-old self will be, but I would hope that, if he writes an advance directive at 45, he would review it at 50, 55, 60, 65, 70 and 75. His 70-year-old self might know better what his 75-year-old self would want.

The other thing—

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Dalphond.

We'll go to Senator Kutcher now for three minutes.