Evidence of meeting #11 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 minors.
A video is available from Parliament.
Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
In answering your question, I wouldn't just take the child's view; I would have to take multiple people's. That's just the way it works in pediatrics.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
Just to be clear, because you talked about changing the law, I want it to be very clear for you, and for whoever is listening to this, that this committee is not talking about a piece of active legislation. We're conducting a study into this, which, hopefully, will inform decisions going forward. As of currently, there is no legislation before the Parliament of Canada that is looking at changing the Criminal Code with respect to medical assistance in dying, just so you're very clear on that.
The other question I had was with regard to Bill C-14 and Bill C-7. Bill C-7 opened up that other track: where death is not “reasonably foreseeable”. I'm just wondering.... It's a very personal decision. For children under the age of 18, if they do have an incurable disease, and if it is quite evident that every day of their life they are going through intolerable suffering, are you personally opposed to that child ever getting medical assistance in dying?
Or would you be open to it if you'd had a conversation with the parents and everyone knew that this was an incurable situation and the child was suffering? I'm just curious about your personal views on that particular aspect of the Bill C-14 track, the original track.
Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
Right now, we have an inequality of access to care. It's very hard to answer that question, because we don't actually have the proper care we need. They don't have access.
My view is that before we can look at this, we need to make sure that there's access to palliative care, that there's good symptom management and that all of those things are put in place. We also need to parse out other things.
It's a very complex question to answer, and I can't answer it because right now there's an inequality of access to care. I believe that we really need to invest in that first before we move forward with this.
The Joint Chair Hon. Yonah Martin
Thank you very much.
I now will hand this over to my Joint Chair.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Senator Martin.
We now go to Senator Mégie, for the senators' round.
Go ahead, Senator Mégie.
Senator, Quebec (Rougemont), ISG
Thank you, Mr. Chair.
My question is for Mr. Carnevale.
Can you talk more about the concept of children's agency?
What are the main reasons for using it? How would it help the committee's work?
Professor and Clinical Ethicist, As an Individual
First of all, the French translation of the term “children's agency” is problematic. Generally, the term used in French is “l'agentivité de l'enfant”. It's a concept that emerged from an area of research known as childhood studies, which raises many concerns about how children are judged—in other words, they are not considered to be capable or competent. They are excluded from important decisions. As I said earlier, it is very clear that they do not cope well with being excluded from those decisions. Agency is a concept that recognizes that young people have aspirations and concerns, and have the capacity to be empowered. For example, children with diabetes can learn how to look after themselves and ensure they stay as healthy as possible by managing their diet, taking their insulin, exercising and so forth. It is very clear that the way in which we engage young children in the decision-making process and show respect for their views can support and strengthen their agency.
Does that answer your question?
Senator, Quebec (Rougemont), ISG
Yes, more or less, but since you both said that it was important to give children a voice, how do you think we can give those voices an outlet?
What impact would engaging young people on future MAID decisions have?
Professor and Clinical Ethicist, As an Individual
The pivotal question is this: To what extent should the voice of young people factor into clinical, individual and policy decisions?
On a clinical level, that is already happening. As I mentioned, if a child with a neuromuscular disease no longer wishes to have long-term ventilation and decides that enough is enough, we have ways to assess their decision-making capacity. We really have an obligation to give significant weight to their wishes.
The process for determining the decision-making control of a mature minor varies by province. In some situations, for instance, the process is subject to a best interests of the minor assessment. Accordingly, even if the minor's decision-making capacity has been established, others can determine that the minor's choice goes against their best interests, thereby limiting the weight given to that choice.
Liberal
Senator, Nova Scotia, ISG
Thank you very much, Mr. Chair.
I have a few questions for Dr. Montes. The first three are very short—I'd like factual information for those—and then there's one I'd like your thoughts on.
MAID for mature minors has been available in some countries for a number of years. Can you tell this committee for what circumstances or conditions MAID has been provided in those countries? That's the first question.
Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
Are you referring to the other countries? I'm not sure. I can't answer that question.
Senator, Nova Scotia, ISG
In those countries, how many young people have received MAID annually?
Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
I know that the number is very low, but there's not a lot of data on it. I'm not sure of the exact numbers, but I can get them to you after the committee.
Senator, Nova Scotia, ISG
That would be great.
In that group of people, how many young people received MAID while in a mental health crisis?
Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
Again, I'm not sure of those numbers.
Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
Yes, I can get you that information after the committee. I don't have the exact numbers with me.
Senator, Nova Scotia, ISG
Great. Thank you.
In your pediatric practice, let's say you have a young person who has decision-making capacity. That person has a glioblastoma multiforme at grade IV. For the group here, that's the worst kind of cancer. You don't want to have that one. Their parents support their decision not to have treatment of any kind.
How would you proceed?
Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
That's a difficult question, and I think this comes back to the gravity of this decision. What I would say is that we have to also look at, first of all, the abuses that could happen in other populations, so things we haven't—
Senator, Nova Scotia, ISG
Excuse me. We have very limited time.
Do you respect that child's and their parents' decision not to take treatment for a glioblastoma multiforme at grade IV?
Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
It's a complex issue, so what I would say is we need to make sure.... It's very difficult to parse out whether or not they're asking for MAID because of a lack of services or a lack of access to—
Senator, Nova Scotia, ISG
Wait a second. I'm sorry.
I'm not asking about MAID. I'm asking if you accept their decision not to seek treatment for the glioblastoma.