Medical Assistance in Dying Committee on Nov. 1st, 2022

[Stanley Kutcher, Senator, Nova Scotia, ISG]

Thank you very much, Chair.

I have two questions. The first question is or Dr. Reiner and Dr. Perrot, and then the second question is for Professor Gibson.

There's a difference between legislative dictum and standards of practice and regulation of practice. How would you look at what we're talking about today? Would you look at it as legislation telling physicians and patients how they should interact with each other, or should there be a standard of practice that physicians and regulators rely on to oversee the practice of MAID, particularly around this area as well? If you are in agreement, who should set that standard of practice and how should it be regulated?

[Prof. Peter Reiner]

I'll speak first.

I think it makes sense for it to be a standard of practice. It could fall under the regulation of provincial colleges of physicians, or something like that. I think that would be sufficient.

The point of all of this is to try to make sure that everything goes as smoothly as possible, rather than tie it up in some regulatory regime that ensures that tick boxes are checked.

[Dr. Chantal Perrot]

I agree 100%. I think it should be standard of practice, not legislated. It doesn't make sense to put in the legislation all the details that should be met. There are some details that are in the legislation currently that I wish were standard of practice. It would give more flexibility.

However, I think the standards of practice can be created. There will be advance directives or advance requests that will be written today. If they're written today, they will be refined over time. We will get better at it as we have experience.

As a clinician, I include things in my MAID assessments today that I did not include five and a half or six years ago, because I have learned over time. There are things I include in the waivers of final consent agreements that I write with patients now that I did not include when I first started out, because I've learned through experience. It's my own experience, in particular, but also my colleagues'.

A template for an advance request would evolve and improve over time.

[Stanley Kutcher]

Professor Gibson, you mentioned you felt that “multiple actors have a role to play”. I wonder if you would mind expanding on that statement for us.

[Dr. Jennifer Gibson]

Thank you for the question. I think it builds on your previous one.

If we think about it, there's the legislation. The clinical guidelines being developed by those who are best equipped, as clinicians, to inform what the practice may look like are going to be important. However, there are other actors who we want to be thinking about.

One key actor here—whom I know has been identified at this committee and who surfaces fairly frequently—is the substitute decision-maker. They play such an essential role in this process. Dr. Reiner's process that he's outlined is very well suited to supporting a substitute decision-maker to be well equipped with an understanding of why a patient may be seeking an advance request, and to be able to be part of that deliberative process. That is an actor. I think there are other actors who have essential roles to play in ensuring that the system around this works well.

A strength of the original Bill C-14, our original legislation, was that there was a monitoring system in place. We were able to track and understand what was going on in the practice and be able to guide continuing policy evolution. However, that is high level, and it often uses quantitative data in reporting statistics. It's very helpful at a population level, but we need to go further down.

Some of the other opportunities we have to strengthen this system as a whole are to continue to foster the types of research that Dr. Reiner has been pursuing and to continue to foster the learning and the training of health professionals that Dr. Perrot is sharing as well. Everyone is in.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Doctor.

We'll now go to Senator Martin for three minutes.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Joint Chair.

I don't have enough time to ask all of my questions. As we come to a close on advance directives, I feel like we have so much more to explore. This is a very important and big topic.

Maybe I can focus on the restrictions that are needed to ensure that we really are doing the right things. For instance, under what strict conditions should the arrangements be made for advance directives, and under what conditions should the procedure be abandoned?

We talk about family involvement along the way. I know there are sometimes issues with family involvement, both positive and negative. At what point should an advance directive or a procedure be abandoned? If we're expanding advance directives beyond the waiver of final consent currently allowed, what protections are necessary? I'm focusing on the protections that are needed for a very reliable system.

I'll begin with Dr. Perrot, and then Professor Reiner.

Go ahead, Dr. Perrot.

[Dr. Chantal Perrot]

I would say the clearer and more filled with detail an advance request can be, the more information will be provided to a MAID provider.

It's important to recognize that MAID providers won't meet a patient until an advance request is acted upon and the MAID provider is contacted to provide MAID for somebody. The MAID provider never meets the person when they are capable. They have to be able to understand what that person would have wanted, based on their advance request—

[The Joint Chair, Hon. Yonah Martin]

Is the form consistent? Is there a standard such that you're collecting these details consistently across the board? Would you explain a bit about the form that is used or the process?

[Dr. Chantal Perrot]

An advance request is written usually in a lawyer's office, with a power of attorney document, I would think. The centre for bioethics had an excellent template a couple of years ago. I wish they had not stopped producing it. Dying with Dignity Canada has an excellent template. There are a number out there that I have used, and I pull from a number of them to create the advance requests that I have written and the ones that I recommend my patients use, but there is no master template that is used universally.

We don't have a master template, certainly, for advance requests for MAID, because it's not possible yet. There is no master template for the waiver of final consent. I drafted my own when it became legal, and I have revised it over time, improving it and adding things to it, so that it's as clear as possible to me. When I meet the patient, I want to understand what they need and want, what their suffering is and what their criteria would be. I ask them to write things down, and I help them to draft it in a way that makes sense to me.

Usually, there are family members or friends present when that's done, so that they understand what's going on as well. However, I have to say that I also have a lot of patients who do not have family members close by—who don't have family members at all or don't have family members that they can trust to do this—so I am concerned with the idea of having to include family.

I have a couple of patients right now whose families are being very obstructionist and are not allowing them to proceed with MAID, and I can't do anything without their co-operation. It makes it very difficult for the patients who are not getting access. I think that may be even more pronounced if there's an advance request that requires a family member to be involved.

I hope that answers your question.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Martin.

I'll now turn it back to you.

[The Joint Chair, Hon. Yonah Martin]

Okay.

If I may, I will again thank our witnesses for their testimony this evening. It's very helpful to all of us as we continue our study. Thank you so much.

We'll suspend for a few minutes to get ready for our second panel.

[The Joint Chair, Hon. Yonah Martin]

We will resume, colleagues.

I have a few comments for the benefit of our new witnesses. Before speaking, please wait until you are recognized by name by one of the joint chairs. I will remind you that all comments should be addressed through the joint chairs.

When speaking, please speak slowly and clearly. Interpretation in this video conference will work like it does in an in-person committee meeting. You have the choice at the bottom of your screen of floor, English or French. When you are not speaking, please keep your microphone on mute. Thank you very much.

Welcome to all of our panellists for this discussion on mature minors. It's a very important topic for us. We really appreciate the time you're giving our committee.

We have three panellists with us—Dr. Kathryn Morrison, clinical and organizational ethicist; Dr. Gordon Gubitz, professor, division of neurology, department of medicine, faculty of graduate studies at Dalhousie University; and Kimberley Widger, associate professor—all by video conference.

I will begin with Dr. Kathryn Morrison.

You have the floor for five minutes.

[Dr. Kathryn Morrison, Clinical and Organizational Ethicist, As an Individual]

Thank you.

Good evening. Thank you to the committee joint chairs and members for the invitation. I am deeply honoured by the opportunity to speak with the committee on this very important topic.

I am a philosopher, having completed my Ph.D. in applied philosophy at the University of Waterloo last year. My dissertation research considers moral arguments regarding mature minor eligibility for medical assistance in dying, MAID. The scope of this work is focused on cases of minors who have a reasonably foreseeable natural death—that is, track one.

I also bring the perspective of a practising health care ethicist at a large hospital network in Ontario, where our service supports patients, families and health care teams who encounter challenging situations regarding informed consent, capacity and quality end-of-life care. As part of my clinical ethics role I support one of four specialized pediatric hospitals in Ontario. Our service also supports the institution's MAID team, where I had the privilege of doing MAID coordination during my ethics fellowship.

The views I bring to the committee are my own and do not represent the views of the organization I work for.

MAID for mature minors is an emotionally challenging topic presenting unique challenges when it comes to core values outlined in the Carter decision. Society has an interest in protecting vulnerable persons, and children are often perceived as vulnerable, entailing stronger duties to child well-being than that of adults. However, at the same time, there are societal duties to autonomy, especially respecting capable persons to make decisions about their own medical care and avoiding forcing persons to endure intolerable suffering against their will.

Children have a legal right to decision-making autonomy corresponding to their level of maturity. This tension between welfare and autonomy puts significant scrutiny on a mature minor's capacity to make such a serious decision.

I wish to present three considerations to the committee, which I believe provide compelling reasons for mature minors to be eligible for MAID under track one. The first is the concern that excluding minors from accessing MAID is discriminatory. The 2016 report of the Special Joint Committee on Physician-Assisted Dying articulates that mature “minors can suffer as much as any adult”. It is also conceivable that minors with a grievous and irremediable medical condition who are prohibited from MAID can experience the same harms as adults.

This differential treatment is challenging to justify in the same way we would justify age distinctions in other contexts, including decisions to marry, drive, drink alcohol, smoke tobacco or use cannabis. After all, in the context of treatment decisions, decision-making authority is usually based in presumptions of capacity rather than a firm age distinction.

Secondly, child well-being is not always synonymous with prolonging life. In end-of-life decisions, well-being can be informed by dignity and quality of life, and should take into account the harms of forcing mature minors to endure intolerable suffering against their will.

Lastly, it's important to acknowledge that mature minors already make incredibly high-stakes medical decisions, including the decision to refuse life-sustaining treatment. I argue that refusing life-sustaining treatment—that is, a decision to die when one could otherwise live—is a far more serious type of decision than the decision for MAID under track one, which is choosing to control how one dies when death is unavoidable. In this sense, mature minors are already treated as meeting the threshold of capacity and maturity required to understand the implications of MAID.

It is challenging to reconcile these considerations under track one with the recent expansion of the law to include persons without a reasonably foreseeable natural death—that is track two—and anticipated inclusion of mental illness as the sole underlying condition. While at face value track two and mental illness as the sole underlying condition requests carry a similar weight to the decision to refuse life-sustaining treatment, there is considerable uncertainty regarding the particular vulnerabilities of these patient populations. I would be concerned at the prospect of extending eligibilities to these groups at this time.

I will close by emphasizing that the uncertainties raised by track two and mental illness as the sole underlying condition should not undermine the case for a mature minor to access MAID under track one.

Again, I thank the committee members for their attention and consideration.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much, Dr. Morrison.

Next we'll have Dr. Gordon Gubitz for five minutes.

[Dr. Gordon Gubitz, Professor, Division of Neurology, Department of Medicine, Faculty of Graduate Studies at Dalhousie University, As an Individual]

I would like to thank the committee for having me here this evening to provide some insights and opinions.

First off, I have an apology. I thought I was going to be speaking about advance directives, but I'm happy to provide comments and thoughts about any aspect of MAID and MAID care.

I work as a neurologist in my day-to-day work. I work with people who have had strokes, many of whom experience intolerable suffering after and cannot access MAID because of a lack of capacity. I have been a MAID assessor and provider in Nova Scotia since the law began in 2016. I am the clinical lead for medical assistance in dying in Nova Scotia with respect to administration and trying to promote good policy, etc. Finally, I am co-chairing and chairing a national committee that's looking at developing educational standards for MAID across the country. It is funded by Health Canada and I'm very grateful for their involvement in this process.

When medical assistance in dying for mature minors was mentioned, I was taken immediately to a case that I actually saw and worked with. It was a young woman who began her medical journey when she was 19, which was just above being a mature minor. She suffered from an intolerable pain problem. She lived with that pain problem for five years. She saw endless numbers of medical specialists, surgical specialists and underwent numerous different treatments for her problem.

When I was asked to see her, it was because track two legislation had just been introduced. I was asked to do an assessment to determine whether she was eligible for a medically assisted death even though her natural death was not reasonably foreseeable.

On the basis of a review of her entire medical history, my understanding of the nature of the problem, which was neurological in nature, and in discussion with consulting experts across the country, I came to the understanding that her natural death was not reasonably foreseeable, but there was no option for further treatment for her. Just shy of her 23rd birthday, she had a medically assisted death in her home surrounded by her family and I was there to provide the medication that brought that about.

In many ways, the experience of that death was an experience for the entire family. They had gone through this journey with her, from when she was underage and beginning to experience the difficulty with this problem, all the way through helping her understand and move forward with the treatment decisions, etc.

In getting to know her, it became quite obvious that she had become an expert in her own problem. She had done the research, she had listened to the doctors and she had listened to the therapists, etc. She weighed her options and she finally made the decision that she would not want to go through some experimental therapies, which were not likely to help her going forward. She engaged in very frank and open conversations with her parents. They were not necessarily onside initially and there was some family strife as a result of that, but eventually they came around and were able to support her.

At the end of the day, she is the closest experience I have with a mature minor in terms of an ability to go through this process and see it through to the other end. Her death was peaceful. She was surrounded by her family and her friends, who lingered. We stayed around after and I can't remember how many pots of tea we drank while talking about her journey and telling stories. I'm still in contact with her family to this day, periodically.

Unfortunately, I don't have the academic background that Dr. Morrison brings to this process, but I think the clinical aspects of this are very similar to what goes on with adults. It's all about communication. It's all about ensuring capacity. It's all about understanding your options and being able to act upon them. Age doesn't necessarily define what that understanding ought to look like or could look like. I know plenty of people who are in their forties who are not capable of making decisions and they are not unwell.

I think I will yield at this point because I am finished.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much.

Next, we will have Professor Kimberley Widger.

You have the floor for five minutes.

[Professor Kimberley Widger, Associate Professor, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, As an Individual)]

Thank you very much, and thank you for the invitation to speak today.

I am an associate professor in the Lawrence S. Bloomberg faculty of nursing at the University of Toronto, and I hold a tier-two Canada research chair in pediatric palliative care. Prior to shifting my focus to research, I worked for 12 years as a staff nurse, mostly providing care to children with cancer but also to those with other types of life-threatening illnesses.

The overarching goal of my program of research is to examine and enhance the provision of palliative care for children living with a life-threatening illness and their families so that every child who might benefit receives optimal care.

Unfortunately, my research continues to show that many children do not have access to specialized pediatric palliative care, and there are some concerning inequities in who accesses this care. Much of this research was highlighted in the final report of the expert panel working group on MAID for mature minors through the Council of Canadian Academies. I was a member of the working group.

My comments will focus on the implications of my research for the care provided to mature minors and their potential eligibility for MAID.

Palliative care is seen as a fundamental human right. It focuses on minimizing suffering and maximizing quality of life. It is meant to be provided from the time a child is diagnosed with a life-threatening condition through to the end of their life.

Palliative care can be delivered in different ways, but my research has primarily focused on the care delivered by specialized pediatric palliative care teams, namely, interprofessional teams of health professionals, typically doctors, nurses, social workers, child life specialists, spiritual care providers and others who have expertise in both the care of children and in palliative care.

One of my first studies was to examine the teams who provided this specialized care and the children who received it. In 2002, there were only seven teams like this in Canada, and they provided care to only about one in every 20 children who might benefit. We repeated the study in 2012 and found there were 13 teams providing care to one in five children who might benefit.

As of 2022, there are 17 teams, but I don’t yet have the statistics on how many children have been receiving this care across the country in the last year. However, based on a couple of relatively recent studies we've done just focused on Ontario, about one in three children who died from a life-threatening condition received care from one of these teams. Clearly, there have been improvements over time, but the progress has been very slow over the last 20 years.

In Ontario, we've looked more closely at children who died from cancer and found that those living in the lowest-income areas and those living furthest away from a tertiary children’s hospital were least likely to receive specialist palliative care. Given the Canadian geography, it may not be surprising that those living further away were less likely to access care.

Couldn’t it just be provided by adult palliative care providers or general pediatricians? Absolutely. Many of the specialist teams work with these other providers to be able to provide care closer to home, acting as consultants so the child still gets the benefits of the specialist team.

We were able to compare the children who received at least some of their care through the specialized teams with those who received palliative care but without involvement of a specialist team and those who had no indication that they had received any type of palliative care. We found that those with the specialist care were dramatically less likely to have frequent visits to the hospital, to the intensive care unit and to the emergency department in the last 30 days of their lives, and they were much less likely to die in the hospital than those who got no palliative care. Unfortunately, the middle group, the ones who got some kind of palliative care outside of a specialist team, were no different in terms of hospital visits or dying in the hospital from those who got no palliative care.

Specialist teams make a difference in the support provided to children and families. As I said at the outset, these teams are experts in providing pain and symptom management, addressing psychosocial and existential concerns, supporting families and maximizing quality of life while minimizing suffering. However, not all Canadian children are able to access these services.

I cannot see how we could allow a mature minor to choose MAID unless all support options are fully explored by a specialized team of health professionals who do this work every day. My greatest fear would be that a 16- or 17-year-old who does not have access to this type of care would be left feeling that MAID is his or her only option.

Thank you.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much.

Thank you to all our witnesses for their testimony today.

We will begin our first round of questions with Madam Vien.

Madam Vien, you have five minutes.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Thank you very much, Madam Chair.

I'd like to thank all the witnesses for sharing their thoughts and knowledge with us. We've studied many aspects of this legislation in the course of reviewing it, and probably the most affecting is this one, the whole issue of mature minors.

Dr. Morrison, thank you for your testimony. I have three questions for you. Take the time to explain what you think.

First, how do you determine that a young person has the capacity to make such an informed decision?

Second, do we have enough data on that? After all, there are very few places on the planet where medical assistance in dying is available to mature minors. It seems to me that it hasn't been documented well enough for us to embark on this journey. I'm not saying that I'm against it—quite the contrary—nor that I'm in favour of it. It's just that I have a lot of questions.

Finally, what criteria or safeguards should be included in this revised legislation if, in our power as legislators, we decide to allow mature minors to have access to medical assistance in dying?

Those are my three questions. You're an expert, so I'm listening.

[Prof. Kimberley Widger]

Thank you. I think—

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

My questions are for Dr. Morrison.

[Dr. Kathryn Morrison]

My apologies. I did hear Professor Widger as well, but I'm happy to take a stab at answering some of the questions.

I'll start with the question of capacity. We know that capacity is often formulated as being time- and treatment-specific. A patient could be found capable of making one kind of decision while incapable of making another kind of decision. In the context of some of my research and some of my practice, we have seen mature minors in situations where they are able to make decisions that entailed quite a bit of complexity as far as understanding and appreciation were concerned. There are many factors at play there, whether it be experience of illness, experience of suffering, child development or how their beliefs, values and cultural norms might apply to the decisions where there are elements of subjective value inherent in some of these questions.

We also see that there are usually different weights assigned to decisions. The more grave the decision, usually we see a need for a higher threshold. What some of my work argues is that we actually see situations where mature minors make incredibly weighty decisions that have grave consequences, especially when it comes to a decision to choose to die where there's the option of having a long and lengthy future in some cases. In those situations we regard minors as being capable. In situations where a mature minor is at the end of their life, they are not facing a lengthy future and they're thinking through all their options on how they wish to die. Oftentimes we see those decisions as, I argue, comparatively less weighty.

When it comes to safeguards, I just want to mention that there are many safeguards outlined quite clearly in the Council of Canadian Academies report.

[The Joint Chair, Hon. Yonah Martin]

Madam Vien, you have one minute remaining.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Mrs. Widger, you were going to jump in. If you have anything to add, we'd be happy to hear it.