Medical Assistance in Dying Committee on Oct. 28th, 2022

[Dr. Jude Poirier]

At the moment, I am always pleased to say, particularly to the children of people with Alzheimer's disease, that receiving a diagnosis of Alzheimer is does not mean your car is going to be taken away the next morning. That is absolutely not the case. In fact, the time has to be chosen with the family. I always say that the family has to be involved. Otherwise, we contact the people responsible for managing their finances, the lawyer, the notary, and so on. At that point, the people affected still have completely informed positions and judgments. Obviously, we cannot wait until the moderate phase to do that kind of document, so it is done at the point when it s still possible to understand the situation clearly.

On the question of activating the consent, I always have the feeling that people have gone before us. I am thinking of Holland and Belgium, that have been working on this since 2005. The Netherlands Supreme Court delivered a judgment recently, in 2021, in response to a clarification by the Royal Dutch Medical Association concerning what the ideal solution should be. There is a lot of experience and expertise there and I would put measures in place that are more or less the same as what is being done there. There is no point in reinventing the wheel in the purely Canadian context.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

In Belgium, as you said, they say that the point at which the advance consent is activated is when the person is no longer able to make the decision. I am thinking of my mother-in-law; she is not unconscious, but she said all her life that she did not want to live in the circumstances she now finds herself in. As the law now stands, we cannot do anything.

Following the submission of the report of the Select Committee on Dying with Dignity, Quebec seems to want to go in the same direction. Do you think this is actually the time to put advance consent into practice?

[Dr. Jude Poirier]

As I said, I come from the research community. It is easy for us to quantify loss of autonomy using research tools that can be simplified, and literally determine a point on a scale from 1 to 5, or from 0 to 30, and say the person has reached that threshold. From that point on, the family should be able to step in and activate the person's wishes.

That is my idea of how it should function. I particularly like the way they do things in the Netherlands, but I might add in a bit more involvement on the part of the family, so it is a little bit less completely managed by the attending physician.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

Thank you.

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

Thank you.

Luc Thériault will now have the floor for five minutes, like for everyone.

[Luc Thériault, Bloc, Montcalm, QC]

Thank you, Madam Chair.

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

I forgot to tell the others.

[Luc Thériault, Bloc, Montcalm, QC]

Dr. Poirier, we have heard witnesses somewhat complicate the route we might take if the government allowed an individual free choice when they suffer from a neurodegenerative or Alzheimer-type disease. The people told us it was complicated, because a distinction would have be made between happy dementia and dementia that is not happy.

What do you think about that? I imagine you can observe this "happy" condition. You are a researcher; what happens at that stage, in your opinion?

[Dr. Jude Poirier]

It is the child, the caregiver, who will speak.

They said that about my mom. She seemed to be in the moderate-severe phase. It was a happy dementia, because she was smiling. She didn't cause any problems. She was not a burden for the nursing home health care team. Every time I visited her, however, she asked me to find a way to end her life.

Different regions of the brain die during the course of Alzheimer's disease. It evolves differently from one individual to the next. It follows a general pattern, but the disease progresses differently from one individual to the next. The biochemical changes may resemble changes that bring on alterations in the biology of the brain, which go hand in hand. For example, the dopamine receptors play a role in pleasure and drug use. These regions of the brain die in the same way in the case of Alzheimer's disease. Chemical imbalances occur.

Are these people happy? No. My mom would not have repeatedly asked me to die. There are biological changes over which we have no control, as I explained earlier. Underestimating psychological pain is often the problem in our fine health care system. We look for physical problems and tend to see psychological problems less. I think that is where the problem lies. In research, we have tools to document it.

I'm sorry, but in my opinion, happy dementia is a strange myth.

[Luc Thériault, Bloc, Montcalm, QC]

Could we not go back upstream, for example, to when the decision is made, the point of the meeting between the care team and the person with Alzheimer? When the person needs to express their wishes, could that stage or possibility not be described, with full knowledge of the facts, and ask the person clearly what they would want to be done, if it is believed that they are in a state of happy dementia?

Is a third party not, in a way, the key in a situation like that? If the third party does not tell the care team to start the assessment, nothing gets done. I imagine the third party is not an evil person. Some people imagine that as soon as that door is opened, everyone in the health care system is going to become evil. If it is a third party, they are necessarily benevolent. So as long as the third party says nothing, the assessment doesn't start.

[Dr. Jude Poirier]

I agree entirely.

The figures from Holland impressed me, I won't pretend otherwise. I expected that 70 per cent of the 244 Alzheimer patients would make an advance request, but ultimately there were only two.

The families and the attending teams have to choose the route together. If that is the case, it will be verified with the patient when the advance request is made by asking them whether they want action to be taken if the situation arises.

I lived through it with my mother. My mother had told me she did not want any end-of-life heroic measures. That included not having an oxygen tube in her nose. I came in one morning and the nurse, who was from another culture I won't name, for whom it was horrifying not to have a tube at end of life, had decided on her own to put one in. It was a battle at the hospital to have it taken out, because the union got involved.

We see that it is being interpreted even by the care personnel at various levels. It would really have to be clear, well in advance, by involving the family and the people treating the patient in question.

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

Thank you.

Mr. MacGregor, the floor is yours for five minutes.

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

Thank you very much, Madam Chair.

Allow me to echo my colleagues in thanking each of our witnesses for offering their perspectives in helping guide our committee through this study.

Dr. Chung, I'd like to start with you. In your opening statement, I think you've echoed a lot of the concerns that this committee has heard with respect to advance requests—just the idea that your future self may not have the capacity or consent abilities of your younger self, especially as the disease progresses. We do know that the word “dementia” is a scary word for many people. There is a fair amount of stigma attached to it.

However, in our last meeting, we had the pleasure and the honour of welcoming a witness by the name of Sandra Demontigny. She is living with early-onset aggressive dementia. It's a genetic version. Her father had it. She has no illusions as to what the disease is going to be like for her. She was there with her father. She watched his “descent into hell”, as she put it, and she knows that's going to be her life as well.

How do you react to someone who has such an intimate familiarity with the disease, who understands what her condition is going to be like as it progresses, and who very much is expressing her personal autonomy right now, saying, “I do not want to end up like my father”? How do we wrestle with that as a committee?

[Dr. Alice Maria Chung]

I think part of that is recognizing that dementia is different for different people.

Let me talk as a caregiver as opposed to a physician.

My mother was the first female obstetrician-gynecologist and the first one of Asian descent in British Columbia. She faced a lot of racism and a lot of sexism. She was a firecracker. She was not someone who would sit down and take crap from anybody.

When she became demented, we thought, “Oh my gosh, this is going to be terrible” because she lost so much of her autonomy. She was happy. I know we wonder how you can tell if someone is happy if they can't talk anymore. She would sit there with her grandchildren—I'm going to cry, sorry—holding hands. She would sing. Even after she couldn't talk anymore, she would sing.

She passed away at home with my dad by her side. She had a great life. If I had asked her when she was in her full glory as a physician and a trailblazer if she would have wanted to die like that, she would probably have said, “Hell no!” At the end, though, I would say that, yes, she had a good death. She had a dignified death, and she had a happy death. It was really with the support of everybody at home. You cannot tell from how you are when you are in your fifties or sixties what it's going to be like in a situation you have not yet experienced.

There is another paper that I reference a lot of times. They had patients who were going to have—

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

Dr. Chung, I'm sorry to interrupt you. I only have a minute and a half left, but I appreciate your answer. Thank you for that.

[Dr. Alice Maria Chung]

Thank you so much. I just get passionate.

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

I totally understand. It's a difficult subject we're dealing with.

Dr. Poirier, I'd like to turn to you.

We've had other witnesses who have talked about the need to have clearly defined, objectively accessible criteria included in advance requests, especially after a diagnosis and when the disease is progressing. In your mind, if advance requests were instituted, how often should those be renewed and reviewed by the patient, the caregivers and the physicians' team? Do you have any insight that you can share with us?

[Dr. Jude Poirier]

Oh, boy. That's a difficult question.

I would say that it varies so much. The course of the disease varies so much from one individual to the other. Some people have had a 19-year-long decline, and I've known another one who had a four-year decline. It's very difficult.

As I said, there are certain checkpoints we know of that we could use. They're just reached faster in one case versus the other one. It could be 15 years or 11 years instead of two years. I just can't give you a decent answer on that.

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

That's fine. That's underlining the difficulty of the subject.

Thank you, Madam Chair.

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

Thank you.

I will now hand the chair back to my colleague Mr. Garneau.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Ms. Mégie.

Two senators are going to ask questions today.

We'll start with Senator Wallin.

Senator Wallin, you have three minutes.

[Pamela Wallin, Senator, Saskatchewan, CSG]

Thank you.

My first question is for Dr. Chung.

Did I hear you correctly when you were saying that you have no experience with doing MAID assessments, that really your comments here are about your—

[Dr. Alice Maria Chung]

Dementia and medical and personal as well as financial capacity—

[Pamela Wallin]

You've never been involved in a MAID assessment. Okay. Thank you very much.

I'll then go to Dr. Poirier.

I want to come back to this question of.... We heard from a witness recently, and this is something from personal experience as well, that we can discuss this concept of “happy” dementia. The person experiencing early-onset dementia said that this is a symptom like many others. You may feel fear. You may feel anger. You may be violent. You may be happy. These things change literally on a dime.

When people declare that other people are happy, it is a judgment from the outside, not from the inside, and it often is there to give the caregiver some sense of comfort that their loved one is happy, but if you spend prolonged periods of time with them, you will see that it comes and goes, like anything else.

How do we get around this idea, which seems to have taken root, that whatever you decided in your fifties, sixties, seventies or eighties about how you would characterize a death with dignity, somehow all of a sudden you're happy and you no longer want that? How do we deal with that issue, which seems to have grabbed hold?

[Dr. Jude Poirier]

Well, I think you said it right on the spot. It's a judgment call from the people around them.

I went through that with my mother. Frankly, that was a part of the progression that I did find less painful, but my mother died painfully. She died of thirst. She stopped eating shortly before she died. That's not dignity. Before that, they were force-feeding her, and then they used tubes for a while, and even that didn't work. I'm sorry, but even if she was on a dopamine spike and felt good about it, she was not dying with dignity. So—