Medical Assistance in Dying Committee on Nov. 15th, 2022

[The Joint Chair, Liberal, Marc Garneau]

I call the meeting to order

Welcome to meeting No. 26 of the Special Joint Committee on Medical Assistance in Dying.

I'd like to welcome members of the committee, witnesses, and those watching this meeting on the web.

My name is Marc Garneau, and I am the House of Commons joint chair of this committee.

I am joined by the Honourable Yonah Martin, the Senate's joint chair.

Today we are continuing our statutory review of the provisions of the Criminal Code related to medical assistance in dying and their application.

I have a few administrative points to make. I'd like to remind members and witnesses to keep their microphones muted unless recognized by name by one of the joint chairs.

I will also remind you that all comments should be addressed through the joint chairs.

When speaking, please speak slowly and clearly for the benefit of the interpreters.

Interpretation services are available for people participating in the meeting both by videoconference and in person. People participating remotely have the choice, at the bottom of their screen, between floor, English and French.

With that, I would like to welcome our witnesses for panel one, who are here to discuss mature minors.

As individuals, we have present with us Dr. Dawn Davies, pediatric palliative care physician, and, appearing remotely, Cheryl Milne, executive director of the David Asper Centre for Constitutional Rights. As well, from The Hospital for Sick Children, we have Randi Zlotnik Shaul, director of the department of bioethics.

Thank you, all three of you, for joining us tonight.

We'll begin with opening remarks, followed by questions for the panellists. These are five-minute opening remarks, and I'd like to start with Dr. Davies.

Dr. Davies, if you're ready, you have five minutes for your opening remarks.

[Dr. Dawn Davies, Pediatric Palliative Care Physician, As an Individual]

Thank you. I think mine will be somewhat less than that.

I'm hoping that what I can share with you tonight are some of the practical experiences I've had in the last 25 years or so working with children, families and youth as a palliative care physician for children. Also, I was the chair of the CPS, the Canadian Paediatric Society, bioethics committee when the Carter decision was made, and I was the author of the CPS position statement, “Medical Assistance in Dying: A Paediatric Perspective”, with respect to mature minors.

I look at all my learned colleagues who have presented to you before me and who will after me, but I am hoping that somehow you've been able to hear the voices of children and families who are affected or have been affected by these issues. I can think of so many families who I think would lend a critical lens to this discussion, and I hope you've been able to find them.

I'll curtail my remarks to that for the time being.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Dr. Davies.

With that, we'll now turn to Cheryl Milne, executive director of the David Asper Centre.

You have five minutes, Ms. Milne.

[Cheryl Milne, Executive Director, David Asper Centre for Constitutional Rights, As an Individual]

Thank you very much, and thank you for inviting me to this hearing.

In addition to being the director of the David Asper Centre, I am a practising lawyer. I have spent many years representing young people at the legal clinic, Justice for Children and Youth, including as an intervenor in the seminal case from the Supreme Court of Canada, A.C. v. Manitoba, so my background includes some knowledge in terms of how the law works with respect to medical decision-making for children.

The Supreme Court of Canada said that a mature young person should be able to make these kinds of decisions, even if the decision has grave consequences, if they have the capacity to do so.

For example, there is legislation across the country that varies in terms of how the young person can make these kinds of decisions. In legislation that articulates a best-interest standard, for example, which occurs in some provinces, that standard should be interpreted so that the choice of an independent minor capable of making decisions must be respected.

In addition to the Supreme Court of Canada, that decision was based upon the Charter of Rights and Freedoms, section 7.

The court also based the decision on the United Nations Convention on the Rights of the Child. The articles that are relevant are primarily article 12, which requires Canada to give due weight to a child's views in accordance with the age of maturity of the child, and article 5, which requires Canada to respect the responsibilities, rights and duties of parents to provide appropriate direction and guidance in the exercise of the child's rights in a manner that is consistent with the evolving capacities of the child.

There are also other articles that add complexity and nuance to those decisions. Article 2 deals with non-discrimination; article 6 is around the survival and development of the child, and article 24 is about access to health care and health services. These are all relevant when looking at the provision of MAID for young people under the age of 18.

In respect of safeguards, article 23 also requires the recognition that children with disabilities enjoy a full and decent life in conditions that ensure dignity, promote self-reliance and facilitate the child's active participation in the community.

One of my primary recommendations—and I think you've heard it before from other witnesses who have come before me—is the need to really address or listen to the voices of children and youth in these circumstances. I know other organizations have recommended something that's called a CRIA, a child rights impact assessment. A CRIA involves both consultation with experts, which we are doing this evening and which you have done up to this time, and also consultation with young people who are directly affected.

I won't go on. My speaking notes talk about different vulnerable groups that you need to specifically address.

I also want to say that in addition to talking to children and youth as a group and consulting with them, we have to remember that we can't really drag this out too long because, in the meantime, there are individual young people under the age of 18 who are potentially suffering and who are being denied this particular treatment so that their individual views and preferences are, right now, not necessarily being considered. While I think consultation with children and youth more generally is essential, we also need to think about the individual young people.

I'll leave it there, and hopefully I can answer more detailed questions for you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Ms. Milne.

We'll now go to our third witness, Randi Zlotnik Shaul.

Ms. Shaul, you have five minutes.

[Dr. Randi Zlotnik Shaul, Director, Department of Bioethics, Hospital for Sick Children]

Thank you, Mr. Chair. Thank you as well for the invitation to present to the Special Joint Committee on Medical Assistance in Dying.

In addition to being director of the department of bioethics at the Hospital for Sick Children in Toronto, I've worked as a pediatric bioethicist for more than 22 years. I am also an associate professor in the department of pediatrics at the University of Toronto.

With today's special panellists, I also had the honour of being a member of the Council of Canadian Academies MAID expert panel mature minors working group, and have collaborated with dedicated child and family-centred colleagues at SickKids and beyond, grappling with questions associated with MAID and mature minors.

A bioethics lens can be helpful when a decision has to be made and values at the heart of the decision may be pulling a decision-maker towards different choices. For such challenging issues in health care, the aim is to carefully and accountably consider all relevant information, relevant law, clinical evidence and ethics literature to make a decision that best reflects the values one considers most important, and to minimize resulting harms.

Through legal decisions from our country's highest courts and the checks and balances associated with enacting law, MAID is legal in Canada for those suffering from a grievous and irremediable medical condition, in an advanced state of irreversible decline, and experiencing enduring suffering where natural death is reasonably foreseeable and voluntarily requested by a capable person 18 or over, informed by the means available to relieve suffering.

From an ethics point of view, Canada’s framework for MAID is supported by considerations of beneficence and nonmaleficence, the duty to provide benefit and avoid harm, and respect for autonomy and justice. At this point, the question seems to be, is there anything about MAID that should require a different approach from that which already enables mature minors to make other health care decisions for themselves, even those that may not extend life? Here, examples may include a mature minor opting for palliative care or declining yet another round of chemotherapy where it holds out very little chance of success.

In thinking through these answers, one can want to respect the autonomy of mature minors while also wanting to be confident that appropriate safeguards are in place. The current framework for accessing MAID has safeguards built into it that would apply to mature minors if access were expanded.

For example, to be found capable of consenting to MAID, a person must be able to understand what MAID entails and appreciate the implications to themselves of consenting or refusing the procedure. The implications of capacity being decision specific is that the more complex a decision and the more serious the consequences, the higher the level of cognitive development and maturity needed to be found capable of making the decision. These requirements are built-in safeguards, ensuring that only those who meet all the stringent requirements necessary for MAID and have the sufficiently high cognitive ability and maturity would qualify for access.

I would add two additional recommendations.

The first would be increased access to palliative care, so that it is available to all in need as a possible alternative to MAID. That being said, my understanding from outstanding and experienced palliative care colleagues is that in rare cases, even what palliative care has to offer may not be enough to address irremediable suffering in a way that is acceptable to the patient.

Finally, while the report of the CCA was excellent, working group members acknowledged that there was insufficient analysis of the views of young people related to MAID to feel confident that the perspectives of those most impacted by expansion of access have been considered.

Missing are perspectives of youth with a range of relevant life experiences: indigenous youth, youth living with disabilities, youth in the child welfare system and youth living with terminal illnesses, as well as their families. In keeping with the previous testimony from Franco Carnevale and Mary Ellen Macdonald, respecting our responsibilities to young people would include studying their perspectives and bringing their voices into deliberations about expanded access.

Thank you for the opportunity to share these considerations. I would be happy to do my best to answer any additional questions.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Ms. Shaul.

We'll now go to questions, and I'll turn it over to the joint chair, Senator Martin.

[The Joint Chair, Hon. Yonah Martin (Senator, British Columbia, C)]

Thank you.

Thank you to all of our witnesses for your testimony this evening.

We'll begin the first round of questions with Dr. Ellis for five minutes.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you, Chair, and thank you to the witnesses for being here.

I have been a family doctor for 26 years, just as full disclosure.

I'd like to start with Ms. Shaul, through you, Chair, if I could. You talked about having the opinions of kids from a variety of backgrounds, and certainly in the experience of this committee I don't think we've had the fullness of that discussion. How do you see that playing out in terms of delaying the decision-making with respect to mature minors, with the caveat, of course, that we haven't had children appear at this committee?

[Dr. Randi Zlotnik Shaul]

I do think that's a concern, as was just mentioned by Professor Milne. A delay is not a neutral position. A delay is something that is significant, and it may be that otherwise eligible young people would not have access, so I think a balance needs to be established here. The challenge, though, is that going forward without these voices is really going forward with a potentially incomplete window into all issues that need to be considered.

So, with humility, we don't know what we don't know, and we don't know what issues or considerations might be raised. I'll leave it to this esteemed committee to decide how to balance that. Perhaps an option might be a staged expansion of access, whereby perhaps you expand it—and again, this is your decision in terms of weighing everything—to 16- and 17-year-olds now, with a stated timeline of when this would be reviewed—so it's not an indefinite re-review—once the more fulsome window into missing voices has been included.

I agree that it's not a neutral position just to indefinitely delay, but it is a concern to be moving forward with insufficient information.

Thank you.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you very much for that. I appreciate it.

Through you, Chair, Dr. Davies, something we didn't hear much about in anybody's opening statement today is how the decision-making of the parents plays into the role of mature minors. You've been a pediatrician in palliative care for a long time. Tell us a bit about your idea of an approach to decision-making and involving the parents with respect to mature minors.

[Dr. Dawn Davies]

That's tricky. In my experience with families, the child or youth and their parents are very often of the same mind. I've had a few encounters in which parents and their child had different opinions about what they wanted for treatment, but as the child's illness progressed, I can't think of a situation in which the child wanted one thing and the parents wanted something different.

With MAID in general, there are situations, sadly, in which the person who opts for MAID does not have the support or approval of their family. That may actually play out in the world of children and youth, but for the most part there will be concordance, and for the rare cases in which there isn't, I think that going with the decision of the mature minor, with all the caveats that Dr. Zlotnik Shaul just laid out, would be acceptable.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you, Dr. Davies, and through you, Chair, once more to Dr. Davies, this committee has heard a fair bit about palliative care availability, which is a significant issue in multiple places in Canada. Maybe you could talk about your experience with that.

To my mind it's a real issue for children—and adults, of course—and I guess some of the concern I have is related to the fact that people may choose MAID simply because they don't have good palliative care services available. Maybe you could comment on that.

[Dr. Dawn Davies]

I think that's true. However, if we look at adults who have opted for MAID, many of them have had excellent palliative care. I think I'm one of a minority of physicians in that I don't think that palliative care is the answer to the question about whether or not there should be MAID.

Obviously I'm passionate about providing excellent palliative care, but I can still think of families whose child was dying, who questioned why they must live in that state any longer. That might be an existential sort of concern, a physical symptoms sort of concern, and I think poignantly of one family I cared for recently, in which the child's mother had opted for MAID for cancer the week before the grandchild died, and the mother caring for this child, who was also dying of a malignancy, said, “Why can't we make this choice?”

Therefore, I think that the mature minors are one scenario and the parents of never-capable children are another one. I know that is not the purview of this committee, but it's actually the question that's raised to me more often than those from the youth themselves.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Dr. Davies.

Next we'll have Mr. Maloney for five minutes.

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

Thank you, Madam Chair, and thank you to all three of our witnesses. As is always the case, your testimony is very helpful.

Dr. Davies, I'm going to start with you on the palliative care issue. This issue has come up time and time again, mostly not in the situation we're discussing now with mature minors.... Everybody around this table and everybody everywhere agrees that we're in need of more and better palliative care, but should the fact that this ideal level of palliative care doesn't exist mean a full stop to medically assisted dying?

[Dr. Dawn Davies]

I don't think so.

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

Would your answer be any different in the context of mature minors?

[Dr. Dawn Davies]

No, because for families that want it, it is available. It might mean relocating as a family for a period of time, but it is available. In small communities, it's just how you build teams around that family. It might not be perfect, but....

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

You said something in response to Dr. Ellis about.... We were talking about mature minors and were talking about a situation that doesn't exist now; this is not available for mature minors right now. You made a statement to the effect that you've rarely—maybe never—seen a case in which when you get to a certain point, parents and child disagree on what the appropriate treatment is. Do you think that's a fair comparison to make in the context we're talking about right now? It's an entirely different decision: In my opinion, palliative care or other personal health decisions are—I'm struggling to find words—not as significant as the issue we're talking about here. Do you think that's a fair comparison?

[Dr. Dawn Davies]

I do think it's a fair comparison. When we look at lots of decisions mature minors might take, it might be earlier in the trajectory, but the outcome may be the same. If they decide against further chemotherapy or further immunotherapy, or something like that, the outcome might be just as dire; it's just the moment in time the decision is taken. I think they're comparable, and mature minors, especially those who have lived with severe illness, are very well informed by their lived experience to make such a decision.

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

Okay. Thank you.

Let's take the scenario a step further, let's talk about a situation in which they don't agree and we're talking about MAID. What would you recommend that a doctor do in that situation, where the individual under 18 is deemed to be mature enough to make this decision, but the parents don't agree? What happens there?

[Dr. Dawn Davies]

I really think that if the youth is found to be mature and capable, there may be parents who can't accept the reality of that person's situation. I think it will be very infrequent, and I don't think that should be a barrier to what this committee recommends. Just like in the adult world, we should go with the decision of the person it's going to affect, which is the patient.

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

It may be infrequent, but it could happen.

[Dr. Dawn Davies]

It could, yes.