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

[Luc Thériault, Bloc, Montcalm, QC]

But then Mr. Liu just told us otherwise, and that there doesn't appear to be consensus among healthy young people.

Ms. Marcoux told us that she would have supported Charles if he had chosen to die at a specific time, or instead decided to continue living until the very end notwithstanding his suffering, which is what happened after all.

If your Markus had told you that he had wanted to end it now, with medical assistance in dying, would you have supported him in his decision?

The role of parents is another factor we need to consider in the decision about whether or not medical assistance in dying should be extended.

[The Joint Chair, Hon. Yonah Martin]

Please answer very briefly.

[Mike Schouten]

Again, just to reiterate, that Friday night, Markus wanted to die. He was ready to die. He was ready to go and meet Jesus—he was a Christian—and he didn't die, and then that Saturday he had beautiful experiences with his best friends, with his family and with his grandparents.

Markus wanted to die. He was ready to die, but by asking a doctor on Friday night to end his life, he would have missed out on those beautiful opportunities.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Mr. Schouten.

Lastly, we'll have Mr. MacGregor, who has the floor for five minutes.

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

Thank you very much, Madam Co-Chair.

Thank you to all of our witnesses.

I would like to start with the Schoutens. First of all, echoing my colleagues, I'd like to thank both of you for having the courage to appear before our committee and to share your personal experiences with your son Marcus.

What we're struggling with here is respecting a person's autonomy. There's a question I want to pose to you.

Under B.C. law—I'm also a resident of British Columbia—we have a provincial law, the Infants Act, which defines what mature minor consent is. Essentially, under provincial law, children can refuse health care if the health care provider assesses them and determines they have the necessary understanding to give that consent.

For example, if a child is living with a terminal illness and the health care provider has the understanding that they can give consent, that child can say, “I don't want you to resuscitate me; I want to refuse feeding and I want to refuse all kinds of life-saving measures should my body fail.”

Perhaps I could ask you for your perspective on that, because that is a way for a child under the age of 18 to essentially give consent, to say that they don't want to be resuscitated.

Can you maybe frame your answer? That's a child making a decision on their end-of-life care. How, in your mind, does that differentiate from a child using that same autonomy to say, “I want to choose the time and space of my passing and maybe I want to do it so that I can have my family members and friends come at a pre-determined time and I can then go out the way I want to”?

[Mike Schouten]

Two things come to mind as you ask your question.

One is that our experience is that all throughout Markus's treatment, he was very involved, right from the first bad scan that showed that before the cancer had even been gone, it was back and into his lungs. Marcus was consulted. It was his decision to continue to proceed with treatment. It was his decision that day that my wife referenced when our oncologist said, “There's nothing more we can do.” It was his decision, along with us, to say, “I want treatment so that my quality of life is as good as it can be in the days that I have left.”

The other thought I had as you asked your question is that I want to emphasize the point that when you make it available to minors, then people like Markus and families like ours will be in a position where they're obliged to consider this. That doesn't sound like autonomy to me.

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

Okay. Thank you for that answer and perspective. I respect that.

Mr. Liu, I'd like to turn to you. I do appreciate the testimony you gave, because we did have another witness who did say there is a lack of consultation among minors in this country, and I appreciate the first steps you've taken.

Our committee is tasked with tabling a report in February of next year. We do want this to be reflective of the witness testimony, but we also want to have some solid recommendations.

From your perspective, what would you like to see the federal government do to build on what you've already done? If you could, just take the remaining time that I have—a minute—to speak about the kinds of recommendations you would like to see in our report for the federal government, to build on what you've already started.

[Kevin Liu]

Yes, of course. It's a big question. Is it okay if I take a few moments to consider? I won't be too long. I know that time is limited.

[The Joint Chair, Hon. Yonah Martin]

Okay. There is about one minute remaining, so go ahead.

[Kevin Liu]

I think it would definitely be important to consult vulnerabilized young people who wouldn't normally be in an otherwise general population—people who could have different perspectives and be affected by this: indigenous young people; again, minors; people who have terminal illnesses and might be eligible for medical assistance in dying. I think there is tremendous value in that.

A good place to start would be youth advisory councils and also proactively seeking youth input. I think it's very hard to find a young person who will approach you and say, “Yes, we're young people, and we want to talk about medical assistance in dying.” I think being proactive and actively approaching young people is definitely the way to go.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much.

Now I will turn this over to my co-chair for the next round of questions.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Martin.

We'll begin with Senator Mégie for three minutes.

[Marie-Françoise Mégie]

Thank you, Mr. Chair.

Some witnesses asked us about the standpoint of young people on this issue. I am therefore pleased to have heard what you told us today. I'd like to clarify a number of points about the study you conducted.

First, could the study be sent to the committee if this has not yet been done? Next, what's the demographic breakdown of the young people you consulted? Are they mainly from Montreal, urban or rural? Overall, how many young people took part in your study?

[Kevin Liu]

Yes, of course. Thank you for your question.

I'm not sure whether I am allowed to submit the study, because it's currently under review by a journal, but I can double-check with my research supervisors. If I am allowed to, I would be very happy to share the manuscript.

In terms of demographic information, we conducted five focus groups, among ages ranging from 16 to 24. The study was conducted in Montreal.

Would you like specific demographics for each of the five focus groups?

[Marie-Françoise Mégie]

When you send us your study, I assume that this information will be in it. Thank you.

Good afternoon, Mr. and Mrs. Schouten. I think that what you experienced was the worst thing that has ever happened to you. Earlier in my life, I worked in palliative care as a family doctor. After having cared for their loved ones, no matter what their age might have been, the families always told us that what they had just experienced—that very short 24-to 48-hour period before death—had been the most powerful time of their life.

After after seeing the photographs and having heard you, I agree that you're right.

I wanted to ask you a few questions. If medical assistance in dying were offered to young people, do you think they would be required to accept it? Everyone is saying that it should be available to them. Do you think young people should be required to accept medical assistance in dying? As parents, would you feel obligated to encourage your son to opt for medical assistance in dying if it was offered to him?

[Mike Schouten]

You mentioned palliative care and how important that is. When the palliative care is focused on—

[Marie-Françoise Mégie]

Excuse me for interrupting.

I mentioned palliative care just to let you know that I understood what you had gone through.

However, here's what I would like to know now. If medical assistance in dying were offered to certain young people, would they be obliged to accept? As a parent, would you feel guilty, as you said, for not having suggested to your son the option of ending his suffering by requesting medical assistance in dying? If medical assistance in dying were ever available to mature young people, would you feel obliged to do that?

[Mike Schouten]

If we would have suggested to our son to consider medical assistance in dying, or if his health care providers had said to him, “Would you like to consider medical assistance in dying?”, the message he would have heard is “We're giving up on you.” That would have led to despair, and that would further entrench the desire to have medical assistance in dying.

We are incredibly grateful and thankful that our health care providers and that we, as parents, were given the strength to ensure for Markus that every day was going to be a day worth living, no matter how much suffering came.

[Marie-Françoise Mégie]

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

We'll now go to Senator Kutcher.

[Stanley Kutcher]

Thank you very much, Chair.

Thank you to the witnesses for being here.

My first question is for Mr. Liu, and then I will ask the Schoutens a question as well.

Mr. Liu, could you be relatively brief, because of the time we have?

In your focus groups, is there a message to us that young people want us to respect their wishes about end-of-life decisions?

[Kevin Liu]

Yes. I think there's a resounding yes to that. They categorically agreed that young people are the best experts on their own experiences and that those experiences inform their end-of-life decisions.

[Stanley Kutcher]

Thank you very much for that.

To the Schoutens, as a parent myself, a grandparent and a physician who has sat with many people who have lost their children, I know that it's the most difficult thing, and I'm so sorry for your loss.

Our challenge is to try to understand this in a much more complex way. You help us think about important issues. This is going to be a difficult question, but I want you to grapple with it, please.

Your son chose to die in a specific way. We respect that. We respect his choice of how to do it, surrounded by his family and the support that you gave him. We also know that all of those in similar circumstances would necessarily make the same choice. We also know that not all families in the same circumstances would also make the same choice. Do you respect that others in similar circumstances may choose a different path for their end of life, one that might be different from your son's, and might have a perspective that is different from yours?

Maybe they have different values, different ways of understanding the world. Would you respect it if their choice and their family's choice was MAID, or should they be denied access to MAID?

[Mike Schouten]

It wasn't Markus's choice to die, just to clarify. Markus wanted to live. He didn't want to die. He was given a terminal illness, outside of our control, that we were responsible for deciding how to respond to, how to live with. We've shared with you this morning how we did that.

I can acknowledge that other families, as I indicated earlier, might focus on the suffering and on despair and on how terrible life is going to get, and that can and will lead to a request to die. There were times in Markus's illness when he wanted to die. The pain was a lot. He wanted to die, but immediately the health care providers found ways to address that pain, but not by suggesting to him, “You're right. We're going to give up on you. Here's the option now.” If that would have happened, he very likely would have died way sooner than he did.

[Stanley Kutcher]

I hear what you're saying, but people may have a perspective that is different from yours. If they have a different perspective and if they may not agree with your statement, would you respect their ability to make that decision?