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.
Liberal
James Maloney Liberal Etobicoke—Lakeshore, ON
My question is what you do in that scenario. You're saying you go with the decision of the child.
Pediatric Palliative Care Physician, As an Individual
If they were found to be capable, yes, I would.
Liberal
James Maloney Liberal Etobicoke—Lakeshore, ON
Okay, thank you.
Dr. Zlotnik Shaul, you raised some concerns in your opening and with Dr. Ellis about the fact that we haven't had children testify before this committee. I think you said it's an incomplete window. Are you saying to us that we should not proceed with the recommendation that it's acceptable to allow mature minors to access MAID?
Director, Department of Bioethics, Hospital for Sick Children
It's a hard call. It is a hard call.
Like I tried to say a moment ago, I don't think it should be an indefinite halt until there's the most fulsome review of the positions that are missed, and I'm wondering if perhaps a staged approach to increasing access might be a possibility. There's a lot of confidence in 16- and 17-year-olds having this comparable or potentially having the same comparable maturity and capacity as those aged 18. Again, this is vulnerable—and I'll leave that to Cheryl Milne to speak to—to legal challenge, because even allowing access just to 16 and 17 would be considered an arbitrary cut-off. Perhaps as part of a staged expansion you could do something like that, where it's not left with the barrier at 18—
Liberal
James Maloney Liberal Etobicoke—Lakeshore, ON
I'm sorry. I'm running out of time. I apologize.
Should we do it now? Are we ready? That was the question.
Director, Department of Bioethics, Hospital for Sick Children
Greater access than there is right now is ready, but it shouldn't be granted alone without a clear expansion of gaining perspectives that are missing.
The Joint Chair Hon. Yonah Martin
Thank you very much.
Next is Mr. Thériault.
You have five minutes.
Luc Thériault Bloc Montcalm, QC
Thank you, Madam Chair.
I'm going to try to ask all three witnesses questions, starting with Ms. Zlotnik Shaul.
You are talking about expanding access to medical assistance in dying by stages, which you establish by age categories.
I imagine that a person's decision-making capacity can be determined as easily at age 14 as at age 15, would that be correct?
Director, Department of Bioethics, Hospital for Sick Children
The staged access is not an end result that I would argue for. I absolutely agree with decisions being made based on capacity. Of course, that is not necessarily linked to age. That is the ultimate place that we're working toward. The challenge is that at this uncomfortable stage, not having had the perspective of young people informing these deliberations, how you move forward without them is a bit of a problem.
If a middle ground.... I would defer to you on how you balance that when you don't have complete information, yet there's such a compelling reason to be expanding access. If the comfort level is not to be moving to the final stage based only on capacity, that was just one idea. Really, the—
Bloc
Luc Thériault Bloc Montcalm, QC
I'm sorry to interrupt you. What you are saying is very interesting, but I don't have a lot of time.
Director, Department of Bioethics, Hospital for Sick Children
I'm sorry. I'll try to be quicker.
Bloc
Luc Thériault Bloc Montcalm, QC
Not a problem.
In Quebec, a person may make decisions regarding certain kinds of care at age 14. Once the age for decision-making capacity has been established and the decision is made to proceed by stages, should the first stage not simply consist in expanding access to medical assistance in dying for patients on track 1, that is, those whose death is imminent?
In terms of pediatric psychology or psychiatry, the report of the expert panel on medical assistance in dying and mental illness shows that the chronicity of the health problem had to be determined. Logically, in the case of mature minors, that would mean excluding suicidal adolescents. For other degenerative pathologies, all treatments and means of relieving the patient's pain would have to have been exhausted. That cannot be done quickly after a diagnosis.
If access to medical assistance in dying were expanded by stages and decision-making capacity were set at between 14 and 17 years, while allowing it strictly for patients whose death is imminent, would that remove your reservation and enable us to move forward?
Director, Department of Bioethics, Hospital for Sick Children
Yes. Thank you. I agree with that.
At this stage, it would be appropriate to only open up to track one patients. I agree with presentations that were made elsewhere and that are consistent with the CCA, that you could not be confident that you have an irremediable mental health challenge by 18. I'll defer to experts who weigh in that way.
I think opening up to just track one at this stage is appropriate.
Bloc
Luc Thériault Bloc Montcalm, QC
Ms. Milne, do you want to answer too? I think there is about a minute left.
Executive Director, David Asper Centre for Constitutional Rights, As an Individual
Thank you.
I would agree with that position, that track one may be the one we're most concerned about at this stage. I think that is where we're most vulnerable in terms of a constitutional challenge on behalf of a young person. With the other track, there may be reasons for hesitation in terms of a lack of evidence and consultation with young people to understand the full impact. We could look at that at a later stage.
When we're looking at the most damaging circumstances and those serious violations of rights, we are dealing with the track one patients.
The Joint Chair Hon. Yonah Martin
Thank you, Mr. Thériault.
Mr. MacGregor, you have five minutes.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
Thank you very much, Madam Co-Chair.
To the witnesses, I appreciate your being here today. It's not an easy subject. We appreciate the expertise you're bringing to us.
Ms. Shaul, I'd like to start with you. You made a point in your opening statement about how there is not enough available data from mature minors. We don't know enough about their opinions on this subject, and more is needed to fill those data gaps.
I think we have an ability here, or you have an ability here before the committee, as we intend to produce a report with some substantive recommendations. I'm wondering if you have any thoughts on how the federal government could play a role in structuring that survey. What would its scope be? How would it work with other levels of government? What are the specific age ranges it needs to work out? What particular attention does it need to pay to children who are of an indigenous, racialized or disabled background?
Is there anything you can provide feedback on with regard to that, please?
Director, Department of Bioethics, Hospital for Sick Children
When Mary Ellen Macdonald gave testimony earlier she talked about quite a comprehensive application that is before government for funding that is really trying to fill this gap. The pieces that are being considered, whether it's with that project or another, are from groups that have been highlighted as particularly of interest in the CCA report. That would include indigenous children, children who are in care, children with terminal illnesses, and those living with disabilities and their families as well.
We could do a deep dive in terms of what would be an excellent form of research. There may be multiple projects that could be put forward, for sure. I'm most familiar with the research institute at SickKids. There are researchers there who are wonderful, and I think there are across the country. That wouldn't be the problem. It's just the time and the funding to conduct it in a really thorough way.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
Thank you for that.
Dr. Davies, I have only about two minutes left, so I'm going to load you up with a couple of questions.
First of all, do you have any thoughts on some supports that may be needed, or that we need to address, for indigenous, racialized or disabled youth? When I look at my riding out on Vancouver Island, I have a very high indigenous population. I know there are definitely some gaps in access to health care services there. Can you offer any thoughts on that?
Also, we heard that this should be brought in through a staged approach. It's probably preferable to start with track one, but this committee also has to grapple with how this issue of mature minors crosses over to our earlier discussion on mental disorders as a sole underlying medical condition. We heard from a number of people who say that even in adults it's hard to make a determination. We know with children how rapidly the brain develops. It goes through different stages.
If you could offer any expertise based on your personal experiences on that subject, that would be helpful, please.
Pediatric Palliative Care Physician, As an Individual
Mental illness is not my specialty, but I would say that from talking to many people about this issue, there is very little appetite for that intersection of mature minors and mental illness as a sole underlying condition. To say that something is irremediable before the 18th birthday, and in addition they have capacity and we're absolutely positive about that, I think is unlikely. I would be very much in favour of going with the track one patients to start with.
On your point about how to access the voices of all the types of children and youth that we've mentioned, there are lots of child and youth advisory committees attached to every hospital. There is broad representation there, so I would encourage you to get in touch with children's hospitals. Bloorview children's hospital comes to mind for children with disabilities. I think they really are poignant when it comes to how they can inform the decisions we're talking about making.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
Right. Thank you.
I'll leave it at that, Madam Co-Chair.
The Joint Chair Hon. Yonah Martin
That was perfect timing for everyone. Thank you very much.
I'll turn this back over to my co-chair for questions from the senators.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Senator Martin.
We'll begin with three-minute question rounds from our senators, beginning with Senator Mégie.
Marie-Françoise Mégie senator, Quebec (Rougement), ISG
Thank you, Mr. Chair.
My question is for Dr. Davies.
I know that access to medical assistance in dying has not yet been extended to mature minors, Dr. Davies, but I would like you to base your answer to my question on your experience in palliative care.
At the point when a young patient's autonomy and vulnerability are assessed, how can we be sure that what they are saying reflects their own autonomy and that they have not, instead, been influenced by the conversations they have had with their parents, who might have stressed the fact that they are suffering and that treatment has not had the results hoped for, for example? How can an assessor get an idea of the autonomy of the young person in question?
Pediatric Palliative Care Physician, As an Individual
I'm sorry, but I'll have to answer in English. I was doing Duolingo until you all came in.
What we imagine and what really happens when a child is dying are two different things. I think it would be so clear to anyone. By the time a child or youth actually decided to embark on this pathway, their disease would be so advanced that there would be no question. In fact, I've seen very much the opposite happen, where I've had a few patients who could have opted for MAID—they were past their 18th birthday—and have not. I have actually had one 19-year-old die by suicide when his disease became too advanced, but not through the channels we're talking about.
The assessment would not be difficult, and I think parents by and large eventually come to see what is happening to their child and become supportive, even if it takes some time.
In the case of younger children, the parents can see what's happening and wish they could exert some decisional capacity over the situation as they would for many other health decisions they make on the part of their child, but I don't think the evaluation would be difficult.