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

[Mike Schouten]

I respect that people may have a different viewpoint on this and may approach it with a different world view, but our appeal to you is that if you open up euthanasia for minors, then even families like ours that would not support that decision will feel obliged to consider it. That's what's problematic here.

As has been recently revealed by CAMAP, it's happening already in our country. To have that happening to families sitting in places like the Canuck Place Children's Hospice would be an incredibly negative experience for them.

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

Senator Dalphond, you have the floor.

[Pierre Dalphond]

Thank you, Mr. Chair.

Since I have limited time, I'll ask my questions to Mike and Jennifer Schouten, whom I thank very much for being present with us today. I offer my deepest condolences.

If I understand well from the letter you sent to us in April and from the other letters you've published on various media, whether about abortion or MAID, you, as Christian political activists, are of the view that a life is always worth living. That's your main philosophy.

I respect your views. They are entrenched in the political stance that you took, but in your letter from April—you said in that letter that the “rapid pace of expansion has recently become very poignant for our family”—about the cancer of your son—“in particular for our [18-year-old] son”. When you wrote to us, your son was already 18 years old. I think he was born in March or April...?

[Mike Schouten]

It was July.

[Pierre Dalphond]

It was July, so he was close to being 18. He was already 18 years and seven months, so he had been eligible for MAID for about seven months before he decided to stop the treatment. Despite his admissibility for MAID, he never asked for it, and it was never part of your discussions.

Why are you so fearful, if we extend MAID to mature minors, that it's going to change your situation? For your son and your family, because of your beliefs and your values, it was not an option you would consider, but you were mindful that it was available. He was over 18. He could have received it if he had applied for it because obviously, once he stopped treatment, unfortunately, natural death was imminent in a matter of months or weeks. It did not prevent you from doing so, but, as my colleague said, some other families believe differently. We heard another mother who said that her son, who was 17 and a half, was going through unbearable suffering and wanted to have access to MAID.

Why would we deny access to MAID to that 17-and-a-half-year-old? It would not force you to apply for MAID, which you did not apply for and your son did not apply for. Why should we deprive others of the choice?

[Mike Schouten]

Again, we were grateful to be invited here by you to share our experience with the suffering and death of a child.

When Markus was 17 and diagnosed on February 26, we were driving back to our home from the Vancouver, B.C., children's hospital. He said to us, “Mom and dad, this cancer sounds really bad. If they don't get it the first time, I might as well just go home to die, because there's no chance.” He understood from day one that this was terminal, yet all of his treatment was focused, first of all, on a cure, yes, and then, when it morphed into treatment for quality of life, it all emphasized the value of his life, no matter how sick he got and no matter how incapacitated he became. That is our experience. We're grateful to share that.

I would suggest that if you would like to hear from people who have different experiences, you need to talk to them.

[Pierre Dalphond]

We did. That's why the opposition is denying access for these people. That's what I understand. Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Dalphond.

We will now go to Senator Wallin for three minutes.

[Pamela Wallin]

Thank you very much.

My questions are for Jennifer and Mike, and obviously about their son Markus.

You have used the word "obliged" on several occasions. Did any medical professional—a doctor, a nurse or a MAID provider—come in and say to you that you must do this, you should do this or you have an obligation to do this? What exactly occurred in the final stages?

[Mike Schouten]

The word “obliged”, Senator, comes directly out of the CAMAP document, where they recommend that physicians have an obligation to bring up medical assistance in dying with people who—

[Pamela Wallin]

Right, as they do with the other options. They have to lay out for patients all of the options to consider.

Beyond that, did somebody come in and say, “You are doing the wrong thing; we don't think your personal or religious views are acceptable; we think that the best course of action is MAID, and right now”?

[Mike Schouten]

As you would have heard in our testimony, Markus halted his treatment at the BC Children's Hospital. His palliative and hospice care was provided through Canuck Place Children's Hospice. It was not part of the conversation at those institutions.

[Pamela Wallin]

Right. That's what my colleagues and I are trying to establish here. It's a very, very important principle that MAID is about choice. If you choose not to access MAID, nobody will ever challenge you on that as parents or from the point of view of your son Markus. Nobody can force you to do this because, in fact, you'd have to go through an assessment process. If you were not interested in that or if it offended your views, nobody could force you to do that.

[Mike Schouten]

I think we have to be very careful here. You would recognize, as we do, that the news this week is filled with people who have been led to despair because medical assistance in dying was offered to them.

When you do the same to minors, children who have not the same capacity as adults and their families, who are simply trying to live each day well, that will lead to despair.

[Pamela Wallin]

I don't have your experience, obviously, but having gone through this with people with whom I'm extremely close, I watched them choose to have MAID as an option. I watched them change their mind about the date, in one case to push it out and in one case to bring it closer, and they had that choice. I think that's just what we're trying to say.

We're all very sad about the circumstances you were in. I just wanted to reassure people that in no way can MAID be forced on someone against their will, or on someone with the religious views of your son or the personal views that you may have. Even if they are suffering, I think offering palliative care or MAID, or whatever the options may be, is not saying you are not worth living. That is not the message that I hear.

[Mike Schouten]

I would implore you to try to be open to that message. We were sitting in the first panel this morning listening in, just to emphasize with what was said there, and the impact of the law is far greater than you might think it is.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Wallin.

We'll now conclude with Senator Martin for three minutes.

[The Joint Chair, Hon. Yonah Martin]

Again, thank you to our witnesses this morning.

Mr. Liu, I want to commend you on the work you undertook and the fact that you're doing some very important work to hear the voices of the mature minors.

My question is focusing on the importance of the specialized palliative care or palliative care. We heard from previous witnesses about the state of palliative care here in Canada and the fact that it's not the same across the country.

In your case, you had this very incredible experience of receiving hospice care and palliative care for your son. That care is important in addressing these end-of-life issues or, in the case of your son, to live well right to the end.

I'd love to get your perspective on the importance of palliative care, hospice care and specialized palliative care in the time that remains for me.

[Mike Schouten]

When Markus had his first negative scan, it was six months into his treatment, and at that meeting with his oncology team, the Canuck Place Children's Hospice nurses and doctors were already part of that meeting. His palliative care was already engaged at that point. They knew Markus. They knew our family. They knew how to care for him when it came time to transfer all of his care into the Canuck Place Children's Hospice from BC Children's Hospital.

As I said earlier, it was incredibly comforting to know that they were always one step ahead of us. The resources that are allocated to the care for children who have terminal illness in a palliative condition appear to be far superior than those allocated to people in the adult world.

As I shared, my uncle and his family spent the last few months of his life scrambling around trying to find the right medications, the right treatment, what to do when, how to do it, whereas every day when they would come to our house, the Canuck Place hospice nurses would assess Markus and say, “I think we need this type of medication” or “We need an extra dose of this type of medication to treat this” or “Let's bring in some more bedding”, or pillows or oxygen. Whatever it had to be, they were always ahead of us.

That allowed Markus to enjoy—as you see in the pictures even the very day before he passed away—every moment he had that he was alive and to not miss out on those unnaturally interrupted beautiful experiences that would not have happened if he had chosen medical assistance in dying far earlier.

[The Joint Chair, Liberal, Marc Garneau]

Senator, you have about 20 seconds.

[The Joint Chair, Hon. Yonah Martin]

Okay, I'll just conclude.

What I'm hearing, as a result of what happened in your case, is that it's important that the timing of the palliative care is not just attached to the end, but rather that it overlaps the early care so that care can be seamless.

Again, thank you very much.

I will conclude, Mr. Chair, so I'm not in my question mode but going back to co-chair.

[The Joint Chair, Liberal, Marc Garneau]

Yes, please.

[The Joint Chair, Hon. Yonah Martin]

Again, thank you very much for your testimonies as we conclude our time with our witnesses. I think it was very eye-opening and compelling, and I want to thank each of you for taking the time to share your lived experience with us, as well as your insights among the young people you studied in your report, Mr. Liu. Thank you for sharing that as well.

I am told by the analyst that because we are going into draft instruction on Tuesday of next week, in order for you to submit your report, it would have to be very quick. I just wanted to let you know the timeline.

To my colleagues, this concludes our study with our witnesses. On Tuesday we begin drafting instructions for our final report. If you recall, there was an email on November 22 from our analyst. Could you review the instructions on that so that we can begin our drafting instructions on Tuesday?

With that, thank you so much to everyone. I bring this meeting to a close.