Medical Assistance in Dying Committee on Oct. 25th, 2022

[Dr. Dorothy Pringle, Professor Emeritus, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, As an Individual]

Thank you.

I'm a retired registered nurse with a background in psychiatric and gerontological nursing. I've practised and have taught nursing students in both acute care and long-term care facilities.

I had the pleasure and the opportunity to be a member of the Council of Canadian Academies expert panel on medical assistance in dying and on MAID and advance requests.

I'm strongly supportive of MAID and advance requests for MAID. I think that patients with devastating terminal illnesses that do not affect their cognition—for example, most types of cancer, cardiac conditions and amyotrophic lateral sclerosis—gain a sense of control and comfort by determining when and under what conditions they will be relieved of pain and suffering.

More challenging are diseases that result in dementia and the loss of cognition, which require someone other than the patient to take responsibility for initiating MAID based on conditions specified by the patients. The Netherlands experience indicates that MAID following a patient's loss of competence is rare but difficult. Most patients with dementia exercise the MAID option while they are still competent.

Now, practices to enhance the effectiveness of advance requests have been identified, but we have little understanding of how effective they are. I think a critical issue is the management of advance requests when the patient is cognitively impaired. We have some advantages to bring to this. We have lessons from the Netherlands, which has excellent oversight and very good data, and we have experience with MAID across Canada on which we can draw.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Dr. Pringle.

I believe I see Ms. Demontigny with us.

Ms. Demontigny, you have five minutes for your opening address, to be followed by some questions.

[Sandra Demontigny, As an Individual]

Thank you, Mr. Chair.

Contrary to my usual approach before I became ill, I'm going to read what I've written here because otherwise I'll never manage.

It's with a feeling of urgency in body and soul that I submit this brief to the House of Commons Special Joint Committee on Medical Assistance in Dying.

I'm going to begin by reading you an excerpt from the report of the Groupe d'experts sur la question de l'inaptitude et l'aide médicale à mourir, prepared on behalf of the Government of Quebec.

Sandra Demontigny was only 39 years old when she was diagnosed with Alzheimer's disease. Her father died of it when he was 53, after having suffered symptoms that had a significant impact on his dignity. Ms. Demontigny has the rarer hereditary form of this serious disease.

This young woman has a family, a spouse and three children. Her youngest is 16 years old and her eldest 24. Her children also have a 50% risk of being struck by this hereditary form of Alzheimer's disease.

...because of her concern for the fate of people who, like her, are affected by a neurocognitive disorder, and what it means for the friends and family who support them every day, Sandra Demontigny gets involved in research projects on the disease and speaks publicly in order to provide clarification. She grants interviews to make elected representatives and the general public more aware of the issue of extending MAID to people affected by a disease that will eventually make them unable to consent to it.

Here we are a few years later. I'm now 43 years old and submitting this brief to the House of Commons. I am doing this in order to share my life experience with early-onset genetic Alzheimer's disease, as a caregiver and as someone who now has the disease. I will also tell you about what the years to come are going to be like as, gradually but steadily, my grief and my fears worsen. I know precisely what to expect. I've seen it close up over the years with my father.

Since learning of my diagnosis in 2018, I've been focusing my energies on preparing my departure to make it as gentle as possible. It's better to look for the positive side. I am working to calm my vanishing brain and my troubled heart. I feel a need to be reassured about my future so that I can do a better job of living out my remaining days and coping with the more frequent trials I will be experiencing.

My plan is to make the most of my final years while life is still good, with a free mind and without fear. Together with my mother and my brother, I cared for my father, Denys, until the end of his illness. He died at the age of 53. He had the same genetic defect as his mother, his mother's mother, and so on.

The risk of genetic transmission is 50%, so it's heads or tails. If that genetic mutation happens to be there, the disease will develop in 100% of cases. This genetic version is early-onset, when people are in their 30s or 40s, depending on the gene responsible. This is usually the mother or father of relatively young children who will in some form or another become caregivers. My three children are my caregivers every day. It's important to point out that each of them has a 50% risk of having the same disease as the affected parent. It's a spectre that weighs very heavily on adolescents and young adults.

I'm categorical about this. Since caring for my father as he descended into the hellfire of Alzheimer's disease, I know that I do not want to go through what my father did. It's out of the question. I don't want to end my life having completely lost all my dignity. I don't want to crawl around day and night because I'm too tired and frequently crying, evasive or lost, managing a few words that are difficult to understand, and becoming aggressive with the children I don't even recognize anymore. I'm forgetting more and more, but I'm still living with my memories of my father, 15 years later. I'm convinced that they will disappear once I have been able to calm them by telling them that they don't have to live again in me.

Our Canadian policy is progressive and humane. Canadians are demanding the legalization of advance requests for medical assistance in dying, MAID, particularly following an Alzheimer's disease diagnosis, in order to be able to live their remaining years more comfortably in body and mind, and to fully and serenely savour each of their remaining days, knowing that when the time they have specified in their advance request arrives, they will be able to rely on their proxy to exercise their right to die in dignity.

Thank you, senators, for your interest in my presentation and my brief. It was an honour to share my life experiences with you and to give you my opinion about advance requests for medical assistance in dying.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Ms. Demontigny.

We will now go to the questions.

I'm giving the chair to Senator Mégie now.

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

Over to you, Mr. Ellis.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you very much, Senator.

Thank you to the witnesses for being here on this very important topic for all Canadians.

That was a very passionate speech, Madame Demontigny. It's a difficult topic and there are difficult questions. However, I think they're important. Again, it's very personal. If you're uncomfortable, I understand that.

How do you choose a time when your suffering has become too much? How do you come to that decision, assuming you still have the ability to make that decision?

Have you given that some thought and discussed it with your health care provider?

[Sandra Demontigny]

Yes, I still ask myself what moment I should choose.

I am leaning more and more towards when I have trouble recognizing one of my relatives, especially one of my children. I know that it's going to happen, and for me, that's the last straw. You have to have a cut-off point somewhere, but it's not easy.

That's my opinion right now, but to be honest, I have to admit that I haven't yet made up my mind.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you very much for that. I appreciate it.

Of course, the difficulty then becomes that sometimes in dementia, we have fluctuations in our ability to recognize people. Have you given that some thought, as well? You may have a good day and you may have a bad day. Is it a combination of those things?

Again, I apologize for asking these questions, but I think it's important that we understand this from someone like you. Thank you, again, for being here.

[Sandra Demontigny]

That's very kind. Don't be shy. Those are very good questions.

You're right to say that there are good days and bad days when you have Alzheimer's disease.

I want to cling to my basic values and to the things I don't want to go through. I don't want to lose my dignity and have to depend on everyone for my basic needs, by which I mean to eat, change my diaper and put me to bed, because I can no longer tell the difference between daytime, evening and night. Those are a few guideposts.

There is of course the risk of leaving too early, but although I love life, I'd rather leave a little bit early than a little bit late, when I can no longer make the decision and would be unable to give my consent.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Once again, I appreciate the answers.

I have another question to ask, if I might. We've heard from other witnesses that life may change. I understand you have a child who is 20. Again, I apologize for asking this, but I think it's important that I understand. If your child of 20 were to have a child, who would be your grandchild, do you think that might have any impact on your decision-making?

[Sandra Demontigny]

That's a very good question.

At 43 years old, I've been a grandmother for a year already. Life has been good in some ways. I'm spoiled because I already have my first grandson and I'm happy that he's there.

I'm facing a difficult situation, because I have to decide up to what point I want to experience the good times, when I know that there is a risk of some truly bad times. One fine day, in my view, these moments will be stripped of any dignity. Unfortunately, I won't run that risk.

I will really have some difficult choices to make, but I don't want to risk being imprisoned in my body for years. I don't want to make mistakes or get aggressive. So much so that, unfortunately, I will probably go a little earlier than I would ideally have liked to.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

I have a final question, through you, Chair.

Has your family expressed any discomfort with your decision and that they want you to be around longer than you might choose to be?

[Sandra Demontigny]

No, the members of my family are all in full agreement.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you very much.

[Sandra Demontigny]

Thank you.

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

Over to you, Mr. Arseneault.

[René Arseneault, Liberal, Madawaska—Restigouche, NB]

Thank you, Madam Chair.

Thank you, witnesses.

Ms. Demontigny, it's so very important for us to hear from you today because you bring a different perspective on advance requests. I want to express my immense thanks. We've heard other witnesses who have made such a request, but you are still youthful, which is cruel, as you've explained, because one day you're going to have to choose to leave too early rather than too late.

We've heard a number of witnesses say that people who were against advance requests for medical assistance in dying were demonstrating ageism. How do you feel about that?

Do you think that you're going to be overprotected by people who say that you're too young to be aware of what you're asking for and that you didn't know exactly what it was that you want? What can you tell us about that?

[Sandra Demontigny]

Thank you for that question. It's an interesting one.

Advance requests for medical assistance in dying are interesting precisely because one can still think and make decisions. At the moment, although I have Alzheimer's disease at a moderate stage, I can still speak to you relatively well.

I'd rather be able to decide when I've reached my limit, or at least the one I think I've reached, at the risk of getting it wrong, then allowing too much time to go by and reach a stage at which I can no longer express myself clearly.

What I'm about to say may be stupid, but I know that the end of my time with Alzheimer's disease might be very difficult, both physically and mentally. But what I don't want to do is allow my destiny to be in the hands of someone who would let me remain ill like that for a long time.

My father got to the end of his disease relatively quickly. The difficult years did not last very long. But my grandmother, meaning his mother, was in a neurovegetative state for seven years.

[René Arseneault, Liberal, Madawaska—Restigouche, NB]

I know what that's like. There were several cases on my father's side of the family.

[Sandra Demontigny]

So you know what I'm talking about.

[René Arseneault, Liberal, Madawaska—Restigouche, NB]

Yes, very well.

If advance requests were allowed today, would that make you feel better, given that you've been diagnosed with Alzheimer's disease? Would you make the request right now?

How might it change your life?

[Sandra Demontigny]

You're right. It would be an immense relief, for me and for my family too, because they know it's important to me. It would enable me to decide on the right time to leave. I'd prefer to go at the age of 80, of course, but I know that won't happen.

The one thing I'm afraid of is letting things go on for too long and get to the phase at which I can no longer give my consent. I'm afraid of being a prisoner in my body and having to do miserable things to myself to try and put an end to my life, which is something I don't want to do.

[René Arseneault, Liberal, Madawaska—Restigouche, NB]

Thank you very much for your testimony, Ms. Demontigny.

Ms. Pringle, in the context of your work as a nurse, what are your thoughts on what you've just heard from Madame Demontigny?

[Dr. Dorothy Pringle]

I think her testimony is about all we need to know about how important it is to have advance requests. I think she presents the biggest dilemma in the whole area of advance requests, and that is for people with dementia where they are in favour of MAID.

Again, if they choose while they're competent to take advantage of MAID, I don't think there's an issue. That is the experience in the Netherlands, which has a lot of experience with this. Very few of the patients there who are cognitively impaired in fact go on to the point where they cannot make the decision and they rely on others. Most of the folks who are cognitively impaired make that decision before they are no longer competent.

I think in the legislation we need to think through whether or not we will continue to permit advance requests after the person is cognitively impaired.

[René Arseneault, Liberal, Madawaska—Restigouche, NB]

Thanks very much to all the witnesses.

That's all the time I have.