Medical Assistance in Dying Committee on Nov. 15th, 2022

[Dr. Timothy Ehmann]

Yes. As it pertains specifically to the child and adolescent, there are many articles in the literature discussing this issue, but there have actually been no systematic studies. As recently as 2012 or 2014, assessors were starting to look at how we objectively assess the capacity of minors to consent to be research participants in medical studies. As recently as then, they were stating that there is no objective assessment, no standard of assessment, for determining that this child has capacity and this child does not have capacity.

There was a review in 2020—

[The Joint Chair, Hon. Yonah Martin]

Thank you, Dr. Ehmann. I have to stop you there. I'm sorry.

Madame Vien, you have one minute.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Thank you, Madam Chair.

Hello, Ms. Marcoux.

I will get straight to the point: would you say that Charles had the capacity to decide?

[Caroline Marcoux]

Absolutely.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Tell me what makes you believe that Charles had the capacity to make that decision.

[Caroline Marcoux]

Charles was always a determined young man who had his own ideas and was always mature. He was a positive leader. By facing the ordeal of his disease, he gained even more maturity. His resilience made him our pillar. He was completely lucid and aware of his situation. He knew that death was imminent and there was nothing left to do. For two years, he made the medical decisions about himself of his own free will, in his own mature way. That decision was also his own. Neither I nor anyone else spoke to him about medical assistance in dying. The question came from him, because he couldn't take any more.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Thank you.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Ms. Vien.

Next we will go to Mr. Anandasangaree for four minutes.

[Gary Anandasangaree, Liberal, Scarborough—Rouge Park, ON]

I would like to thank the panel.

I want to particularly thank you, Madame Marcoux. Thank you for bringing a real-life perspective to this discussion.

You have heard from both Mr. McCormick and Mr. Ehmann. I'm wondering if you could take a couple of minutes to walk us through what you went through, your perspective of Charles's ability to make a decision and what challenges you faced as a family in accessing MAID for a mature minor. I'm also wondering if you could speak to some of the issues brought forward by Mr. Ehmann with respect to MAID being something that should not be available to minors overall.

[Caroline Marcoux]

During the two years of his illness, Charles chose the type of operation he would have on his leg, he chose to stop the treatments at the point when there was no further point in taking them, he tried things—all the medical decisions were made by him, with the support of the medical team, after discussing them with the doctors. Yes, it was a family decision, and yes, we talked about it, and the family does have to be consulted in all of that. However, at the age of 17, he had the capacity to make his own decision.

From spending time with sick children for two years, I saw that illness often brought them additional maturity, a kind of wisdom. There may not be scientific proof of that, but it is based on experience. For some, maturity comes with illness.

At the end, it was Charles' decision. He did not make the decision when he was diagnosed. He did not give up when he was diagnosed or during the treatments. He made that decision right at the end, when he couldn't suffer any longer and he had lost his autonomy and his dignity. If he had been in exactly the same situation but had been three months older, and thus an adult, he could have requested medical assistance in dying. And yet Charles was more mature than many adults who have the right to make that decision.

[Gary Anandasangaree, Liberal, Scarborough—Rouge Park, ON]

Thank you, Madame Marcoux, for sharing this with us again.

As you advocate, because I know this was one of the commitments you made to Charles, for the availability of MAID for mature minors, I want to get a sense from you of what types of obstacles or challenges you've faced in ensuring that MAID is available for mature minors.

[The Joint Chair, Hon. Yonah Martin]

Please be very brief.

[Caroline Marcoux]

In fact, I have not taken a lot of actions to date. Today is the first major thing I am doing. What I have been doing for a year and a half is mainly raising awareness among my family and friends. When I can talk about it publicly, I do. I focus on raising awareness. I haven't faced any obstacles so far in telling Charles' story. In any event, the people I have talked to about it have seen the need for expanding access to medical assistance in dying.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

Next we have Monsieur Thériault for four minutes.

[Luc Thériault, Bloc, Montcalm, QC]

Thank you, Madam Chair.

Hello, Ms. Marcoux. Thank you for accepting our invitation.

[Caroline Marcoux]

It really am pleased to do it. It is always a pleasure to talk about Charles.

[Luc Thériault, Bloc, Montcalm, QC]

You said that Charles had two wishes. I want to reassure you: tonight, you are doing a masterful job of fulfilling one of his wishes by talking to us like this and by being such a strong voice to convey his wishes.

You told us that Charles deserved the choice of medical assistance in dying. If he had had that choice, in the situation he was in, do you believe it would have lessened his anxiety and pain? If so, why?

[Caroline Marcoux]

I think it would have. He truly was just waiting in fear: he was waiting for death and he was afraid of not knowing when it was going to happen. Yes, the drugs managed to calm his anxiety for a bit. Then he couldn't take it anymore. He requested palliative sedation because it was the last solution remaining to him. He simply wanted to sleep and not be suffering anymore.

It would have given him peace, to be able to choose, to have control over the final moment and be sure I was going to be with him. That is actually something that worried him a lot: I had to be with him constantly, night and day, because he was afraid of finding himself alone and dying all alone. If he had had the choice, my feeling is that it would have reassured him. Being able to decide simply where, when and with whom he was going to die would have been reassuring for him.

[Luc Thériault, Bloc, Montcalm, QC]

Of course, it was his choice to request palliative sedation, but was that his number one choice? How did he look at palliative sedation? Did he come to that decision easily?

[Caroline Marcoux]

It was plan B. Once he knew he could not receive medical assistance in dying, he knew that palliative sedation was the only remaining option. He waited a bit, because there was a new drug that had managed to calm his anxiety. He waited a few days, but in the end he requested it. But it really was his plan B. Palliative sedation was a solution because he had no other choice, but it was not option A for him.

[Luc Thériault, Bloc, Montcalm, QC]

Did that decision make him as calm as he would have been if he had been given medical assistance in dying? Did that solution shock him?

[Caroline Marcoux]

He was shocked from the moment when he knew he was not entitled to medical assistance in dying to the moment when he decided to request palliative sedation. Between those two moments, he was angry and he was very anxious. He was shocked that he did not have access to it.

Plan B, palliative sedation, calmed that anxiety. Once he made the decision to request palliative sedation—to be put to sleep—it worked for him. It was the state that it left him in for 24 hours that was difficult. In fact, he was already at the end of life. He might have died the same day anyway, even if he had not received palliative sedation. He was completely at the end of his rope.

So yes, he felt angry for a while.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

Next we have Mr. MacGregor for four minutes.

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

Thank you, Madam Joint Chair, and thank you to our witnesses for being here today.

Madam Marcoux in particular, thank you for having the courage to share a very personal story with us. We certainly offer our sincere condolences to you for what you and Charles went through.

We have had a number of witnesses on this subject who have discussed when capacity forms. Your son Charles was almost an adult. He was almost legally an adult at age 17. I'm just wondering, had this disease struck earlier, at a younger age.... How do you think you and Charles would have approached this question if, say, he'd been 12, 13 or 14? I'm just wondering, because I think that's an important question for our committee to consider, especially when we're dealing with pretty young ages and these terrible diseases strike.

[Caroline Marcoux]

That is still hypothetical. I can't know how he would have experienced it at age 12, but Charles was always mature, regardless of his age. He was not a scatterbrain. He was just a normal teenager. He was very calm and very collected. In his case, he probably would have been just as mature at the age of 12 or 13.

As I said, the sick children I have seen, both toddlers and older kids, were calm about being sick. I talk a lot with other parents who have also lost their child, and it was their child who helped them. It is our children who help us get through the illness and then get through the grief, because they themselves accept it, quite simply. They have the maturity, the resilience, that enables them to accept the illness, to live with the illness, to do what has to be done to overcome it or to accept death when they can't overcome the illness.

Would Charles have made the same decision? Would he have been at the end of his rope at age 12, too? Probably yes, but we will never know. The fact remains that the situation would have been the same and there would have been the disease and all the same problems for two years.