Evidence of meeting #26 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 decision.
A video is available from Parliament.
senator, Quebec (Rougement), ISG
Based on your clientele, do you think that some minors who are receiving palliative care would request medical assistance in dying if they had the option?
Pediatric Palliative Care Physician, As an Individual
No, and I think when we look to other countries, we know the numbers are very low.
When we did the Council of Canadian Academies review for the Netherlands, for example, I think there were 10 to 13 children. It's very low, very infrequent.
In my clinical experience, the ability of a youth to say, “I think I'm dying” often comes on the day they die or the day before they die. Most children and youth want to live. They want desperately to live, and I think that's why going through a very formal channel like this is going to be done very infrequently, because by the time they come to that realization, it will probably be too late.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Senator Mégie.
Senator Kutcher, go ahead for three minutes.
Stanley Kutcher Senator, Nova Scotia, ISG
Thank you very much, Chair.
Thank you so much to our witnesses. I think your thoughtful ideas here about addressing track one have been very helpful to the committee, so I thank you for that.
Currently the Canadian Association of MAID Assessors and Providers is developing a training program, which should soon be finished, on MAID assessment and provision. It will be certified by the Royal College, The College of Family Physicians of Canada and the Canadian Nurses Association.
Are you aware of that program and whether it addresses the issue of mature minors in its totality?
If you're not aware, or if it doesn't, do you think something like this should be developed for mature minors, perhaps under the auspices of the Royal College as well as the Canadian Paediatric Society, something so that we would have comfort that MAID assessors and MAID providers dealing with mature minors really are meeting a particular standard of professional competency?
That is for any one of the witnesses.
Liberal
Senator, Nova Scotia, ISG
This is for Dr. Davies, Dr. Zlotnik Shaul and Cheryl Milne, please.
Pediatric Palliative Care Physician, As an Individual
Something we talked a lot about at the Council of Canadian Academies is that I don't think we would imagine panels and putting these children and youth through an extra lens of security for us. I think it needs to be embedded in the child's health care team that everybody feels certain that the child has the capacity to make that decision.
If there was some extra level of sober second thought for this decision, I think it would have to be within the child's team and not some external mechanism. I'm not aware of the MAID providers' training program. There may be nuances that would help them in dealing with youth and mature minors, but I don't think it would be that much different from the work they do every day.
Executive Director, David Asper Centre for Constitutional Rights, As an Individual
The standard we have used for medical decision-making for youth and for mature minors—even though that's not really a legal term, as there isn't a real definition of that—is one that applies both for adults and for children.
Where there's some nuance is around the voluntary aspect of decision-making, because children and young people tend to make those with their families supporting them. Differentiating between a decision that is the autonomous decision of a young person and one they're making with their family is where we wouldn't want to see that decision being discounted because they're being supported by their family in making that decision.
That's the one tricky area, I think, but mostly it's the same standard of appreciating and understanding what is being proposed, the ability to make that voluntary choice, and understanding the gravity of the decision.
What we know from the case law around withdrawal of treatment and refusal of treatment is that when the gravity of the decision is such that the young person is refusing life-sustaining treatment, for example, a significant amount of scrutiny from the medical team is placed on that decision. That is just the standard practice, so I don't think we need to make it more difficult for the young person to make that decision legally.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you.
Although the time has run out, Ms. Zlotnik Shaul, would you like to quickly comment?
Director, Department of Bioethics, Hospital for Sick Children
Sure.
If I understood correctly, you were asking about a training process. In terms of the clinicians I've spoken to, there is an appetite for some clarity of the associated expectations, should it be expanded to mature minors. Whether or not this clarity of expectations comes from a regulator or a framework that's endorsed by the Royal College, that clarity is something that I think there is an appetite for. It's not an extra layer of steps to take, but for a clarity of expectations that will likely just be, as Cheryl was saying, similar to what currently happens for other decisions.
Thank you.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you.
Senator Dalphond, you have the floor for three minutes.
Pierre Dalphond Senator, Quebec, PSG
Once more, thank you very much to the witnesses. It's very useful, and I share the view that precautions are necessary.
My question is for you, Dr. Davies. You say that they realize they're going to die quite late in the stage. The battle is over. They lose hope, and they'll die shortly after. In fact, will they have access, in practice, to the MAID process, or will they end up being in palliative sedation because they reach a point where they are suffering so much? Who's making that decision? Are the parents deciding when the child, even if he's 17, is in such intense pain?
Pediatric Palliative Care Physician, As an Individual
I'd have to say that most of the children and youth I have cared for do not need palliative sedation at the end of life—that's rare. That's why I think the numbers will be low of the youth who actually want to embark on a process like this. Some may, because of that need for autonomy and to have things go the way they want them to go, but I think many youth will not be able to accept, even to themselves, that they are dying until it's too late.
That's one of the main reasons the numbers will be low. I think the number of adults has borne that out. The number of people in their twenties is very low compared to the number of older patients.
Senator, Quebec, PSG
The team who will accompany the family, because I guess it's a family experience and not the most fortunate one, are they raising the issue with the patient and the family, or do you wait for when the request comes?
Pediatric Palliative Care Physician, As an Individual
I have had very few conversations with youth about this. There are very few young people who have wanted to talk about hastening their death. The people I've spoken to are parents of not capable children who wonder why their child must continue to suffer. That's just my lived experience as a clinician.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Senator Dalphond.
We'll go to Senator Wallin for three minutes.
Pamela Wallin Senator, Saskatchewan, CSG
Thank you very much.
I just want to say thank you. I'm not sure who said it, but I think the most powerful statement today is that delay is not a neutral decision. That applies to the entire discussion we've been having, for years now, in this country.
What I hear in this conversation is that we're trying to deal with our own concerns. As legislators and as medical professionals, we want to make sure we're doing the right thing when this is really about mature minors, the child and the young person's capacity, and it's their call.
My question is about this process of hearing their voices. When the numbers are so small in the first place and we're talking about funding projects and going out and giving voice, I am just afraid this is another example of pushing this down the road when, in fact, delay is not neutral. We have some kind of agreement here on track 1.
I'll start with you, Dr. Davies. Does it concern you that we will just push this further down the road?
Pediatric Palliative Care Physician, As an Individual
Yes. If you limited it to the youth who were imminently dying, we could learn from their experience, and that might inform the other groups of youth going forward. It's true that delay is not neutral, but on the other hand, this is a new sort of experiment for humanity, if you will. We still need to be careful and go slowly. It's just like research. There are baby steps to inform the next stage. To me that makes sense.
Senator, Saskatchewan, CSG
Do we have this? I don't know if Cheryl Milne or Randi, if I could just call you that.... I think you mentioned this, Dr. Davies, as well. This data, does this information exist at children's hospitals?
Obviously, care teams have spoken to children, to families and to legal advisers. Does that not exist anywhere now? Is there not commentary that we can mine?
Cheryl, do you want to go ahead with that?
Executive Director, David Asper Centre for Constitutional Rights, As an Individual
I'm not sure if I'm the best person to answer that.
What happened with the expert panel is that there were some interviews done with some young people who were part of Bloorview and another sort of treatment centre. Mostly, when you talk to young people, they want to be respected and listened to. They want to be treated equally, particularly if they are competent to make decisions. We start from that as a premise.
The other information we need is about those other groups that we may be expanding MAID to include that we don't know enough about—the young people's experience.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Senator.
We'll now go to Senator Martin for three minutes.
The Joint Chair Hon. Yonah Martin
Thank you to our witnesses for your insights, which are very important for this really serious discussion about mature minors.
As a parent, I can't even imagine being in a position to have to consider such a decision, even with a very mature child. A parent should not have to bury their child. It's such a heavy topic for us. Thank you for your insights.
My questions are for Dr. Zlotnik Shaul.
The committee heard from a number of witnesses who were concerned about how social factors such as poverty, stigma, abuse and the lack of access to care might affect minors' decision-making about MAID.
In your view, how do social factors affect a minor's decisional capacity and/or the decision-making process?
Director, Department of Bioethics, Hospital for Sick Children
That's a rich question, for sure.
I might defer to Dr. Davies in terms of the capacity assessment, but I think having the capacity piece not tied exclusively to an age is giving recognition to fact that the lived experience of an individual informs their ability to understand and appreciate the question before them. In terms of social context and in terms of experience in living with an illness, all these pieces will inform and add to the maturity they may have in regard to their current context, as compared to somebody who may just be newly in a position of living with an illness.
One's social context and one's lived experience—all of those pieces—are what add to one's maturity and capacity to make a particular decision.