Evidence of meeting #22 for Medical Assistance in Dying in the 44th Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was request.
A video is available from Parliament.
The Joint Vice-Chair Hon. Marie-Françoise Mégie
I am now going to give the floor to Mr. Luc Thériault for five minutes.
Bloc
Luc Thériault Bloc Montcalm, QC
Thank you, Madam Chair.
Ms. Demontigny, you concluded your testimony by saying that it was an honour for you to meet members of Parliament and senators. I'd like to tell you that this honour is reciprocal. It's not in fact the first time I've heard you, but it's the first time that I've been so deeply affected and overwhelmed. Perhaps it's because of closer proximity.
You used some very powerful words, including, “my vanishing brain and my troubled heart”, and said that you didn't want to be imprisoned in your body.
I'm trying to determine what would be the best conditions for someone suffering from a major degenerative neurocognitive illness to be able to live as long as possible, with the assurance of knowing that their wishes would be complied with, even when they are no longer able to state their point of view, and that everything possible will have been done to allow a proxy, together with the care team, to trigger the process, even if the care team says they do not think the time has yet arrived and that there is no hurry.
What I find staggering this evening is your telling us that you wouldn't wait until you were unable to make this decision, and that you would rather shorten your life. As a legislator, I'd like to be competent enough to prevent you from having to do that.
Why, at the moment, do you believe you would have to do it before becoming incapable of making decisions?
As an Individual
It's because I can't make an advance request for medical assistance in dying. That's the key.
Bloc
As an Individual
It would certainly allow me to live with my disease for a longer period. Right now, however, advance requests for MAID are not available. So there definitely would come a time when I wouldn't want to take the risk that things worsen too much and that I would want to move quickly before I lose my ability to make informed decisions. But with an advance request, I would be able to clearly establish what is acceptable for me and what is not. Moreover, I've already spoken with people close to me, my children, and everyone is in agreement.
Ideally, however, I would like to live for a relatively long time. I want to experience part of my illness. I don't want to leave at the beginning, and I'm willing to accept being lost and needing assistance.
However, I don't want to experience the final phase of the disease, completely dependent and unable to express myself very much, if at all. I've seen it and I don't want to live through it. That's what I would specify in an advance request. It would definitely give me more time.
Without wishing to put pressure on you, if advance requests were not approved by Parliament, then unfortunately, I would have to decide to leave before entering that phase, in order to avoid becoming trapped.
Bloc
Luc Thériault Bloc Montcalm, QC
I heard that, and it's why I'm so deeply moved.
I think we can get there because it seems to me that for decisions as personal as having to freely decide on one's own death, I can't see why the state should get involved, particularly given the conditions you've experienced. You and your children are very much aware of what to expect. In fact your testimony talked about a family process.
Some people see wrong everywhere, and people who might take advantage of the situation. What I would denounce is a paranoid legality-ridden process surrounding a decision that is perfectly serene, that involves individuals affirming the fact that they are human beings, that they have the right to decide, with freedom of conscience, when they are going to leave this world and would like someone to help them do so.
I, for one, am prepared to help you.
As an Individual
Thank you, Mr. Thériault. I am happy to hear that.
You're right when you say that it has become a family process. From the moment I mentioned the advance request option to my children, they felt that it was very sensible. It's clear to them that having poor quality of life and being bedridden for three, four, five or even 10 years, makes no sense. I don't want that, and neither do they.
Their risk of having this disease is 50%. They told me that they would make the same decision as I have if they were to receive that diagnosis.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
Thank you very much, Madam Chair.
Thank you to all of our witnesses.
Madame Demontigny, thank you.
In all of our conversations around this committee, when we've been speaking about dementia, most of the testimony has been from professors and from people in the medical profession who can speak about the disease generally and of specific cases in a slightly abstract way. I think your testimony is very powerful because you're here as someone living with dementia. You know what's coming your way and you are pleading for autonomy over your own life. I think that's a very powerful statement.
I want to ask you a question about the stigma that is associated with dementia. We have heard several witnesses talk about how, when people first receive a diagnosis of dementia, they may not be familiar with the disease intimately, but they do know generally that it's a disease that goes down a very negative path, which might influence their decisions.
You, however, have a very intimate knowledge of the disease because of your family history. In your opening remarks, you talked about how you wanted to avoid the descent into hell that your father went through. You understand this disease very well.
Can you maybe talk about your own personal experience with the stigma associated with the disease as a person who's intimately familiar with it? I think you offer some good insight into that.
As an Individual
Thank you.
You have said a lot of interesting things and I feel that they are a little mixed up in my mind.
You're right in saying that I know the disease from the inside.
To be honest, I wouldn't want anyone to have to care for a young person with Alzheimer's disease. Older people often die before getting to the end of the disease, the stage at which the symptoms are horrendous. Younger people don't die because they are in good shape. My father had been very athletic and wasn't dying.
I would have trouble believing that anyone who has witnessed this kind of end-of-life process and was afterwards diagnosed with Alzheimer's disease would choose to carry on to the very end. It's clear that I certainly wouldn't.
My father was well cared for. There were people there for him. Nevertheless you could see the suffering on his face and in his eyes. His face looked tense. He cried when he would look at me but was unable to speak any more. He crawled around on the floor. He licked the floor. I don't think that most human beings would want to do that. I don't want to go through it. Knowing what it is, I want to avoid it.
Other people have a different view of the end of life and that's fine. The ideal is to allow everyone to follow the path that suits them, on the basis of what life gives to them.
Life gave me a poisoned chalice. I decided to be proactive and work towards living a dignified life in spite of Alzheimer's disease. That's not really possible right now.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
Thank you for that.
We've also had some witnesses who have been concerned that if advance requests were permitted, there might be some difficulty interpreting the wishes.
Do you have any concerns that if we allowed advance requests...? I think you are of the opinion that you would be able to clearly articulate the conditions of the disease for which you want medical assistance in dying to be triggered. Can you offer any personal thoughts on those concerns that we heard earlier?
As an Individual
That's very interesting.
I won't hide from you the fact that it's an area I know well. I worked in the health field and cared for my father throughout his illness. So I'm familiar with the subject. That's not necessarily the case for most people and it can be complex.
In the health system, some people, like social workers, support people as they deal with a number of procedures. They also help them fill in complex forms. There are also psychologists who can help the people who are ill to understand things when required. These are very helpful people.
I have access to a psychologist and a social worker. I speak freely with them about my experience with Alzheimer's and the process I'm going through. It does me a lot of good. If they can't answer my questions, they will, when required, go and obtain information for me and tell me about what they found. It's important for people to have access to these services, which are difficult to obtain in the health system. However, to make a well-informed decision after having examined the entire range of possibilities, what's required, in my opinion, is access to qualified professionals.
The Joint Vice-Chair Hon. Marie-Françoise Mégie
I am giving the chair back to Mr. Garneau.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Senator Mégie.
We are now moving on to questions from the senators.
I see Senator Dalphond, and thus presume that Senator Kutcher is not with us.
We will therefore begin with Senator Dalphond, who has the floor for three minutes.
Pierre Dalphond
Thank you, Mr. Chair.
I'd like to thank Dr. Bigham, Ms. Pringle and Ms. Demontigny for being here with us this evening. Your testimony is extremely important.
My question is for you, Ms. Demontigny. It's a difficult one. Certain people have said that when someone has Alzheimer's disease, the self changes and a state of contented dementia can be achieved. Have you ever experienced this personally? Do you agree with it? Would you say that contented dementia is a stage that has to be gone through before receiving medical assistance in dying? Do you think the final stage comes when the patient suffers from aspiration pneumonia, dual incontinence, and other things like that?
As an Individual
That's an excellent question and I'm glad you asked me.
There are indeed some professionals who often speak about contented dementia. To be quite honest, I don't believe in it. Contented dementia amounts to symptoms of a disease being expressed. It's not that the person is content, but rather that brain plaques have disrupted their neurotransmitters, causing what appears to be expressions of joy. No one has ever told us that they feel happy, even though they appear to be. I honestly find it sad to hear people say this, and I've often heard some health professionals who practise medical assistance in dying say that when people experience contented dementia, they are happy. We just don't know.
I can tell you today what behaviours would make me feel that I'm losing my dignity, for example, if I no longer recognized my children, if I couldn't manage to go to the bathroom alone or if I couldn't eat by myself. These are behaviours that I've mentioned already and that are readily observable.
Some people won't like what I'm going to say, but I think that contented dementia is just a concept that some caregivers are fond of. They want to believe that the patients are happy. But we don't know if they are and we can't assume that they are, hence the interest in advance requests.
Pierre Dalphond
Contented dementia is not a state you would like to experience, but you could acknowledge that someone else might be ready to experience it and wait until a later stage to obtain medical assistance in dying.
As an Individual
Absolutely. The decision about the stage of the symptoms at which action is required might differ from one person to another, and that's fine.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you very much.
We'll now go to Senator Wallin for three minutes.
Pamela Wallin
Thank you very much.
I have a brief question for Sandra.
Again, thank you for your comments here tonight.
I just want to ask whether you have created a list of symptoms that would be unacceptable to you. Have you discussed that with family and caregivers, and are they in agreement?
As an Individual
The answer to all these questions is yes.
In my case, it will be when my autonomy for my basic needs will have been significantly altered. It will be when I can no longer eat or go to the bathroom on my own, or be unable to wash myself. For me, it's autonomy. I may be too proud, but I don't want to share those things, particularly when I know that I have a degenerative disease that's not going to go away.
If I had an illness that meant receiving intimate care on a temporary basis, I think I could accept that, knowing that I would get better at some point. But I know that for me, things are going to get worse, and I have no interest in accepting such things. My children all agree—
As an Individual
My children are all in agreement. They told me that if they were to experience the same thing, they would reach the same decision.
Pamela Wallin
I would like to hear from Dr. Bigham and Dr. Pringle on this.
We're living in a world right now without advance requests. To both of you as medical professionals, is Sandra's approach acceptable to you? She has a long record of saying these are her views; she has experience; she is prepared to write it down; and the family or substitute decision-makers have agreed. Is that acceptable in any way now, or would it absolutely require an advance request in order for her wishes to be met on receiving MAID?