Medical Assistance in Dying Committee on Nov. 4th, 2022

[The Joint Chair, Liberal, Marc Garneau]

I call this meeting to order.

Good morning, everyone. Welcome to meeting number 25 of the Special Joint Committee on Medical Assistance in Dying.

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

My name is Marc Garneau, and I am the House of Commons’ joint chair of this committee. I'm joined by the Honourable Yonah Martin, the Senate's joint chair.

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

I have just a few administrative notes.

I would like to remind members and witnesses to keep their microphones muted unless they are recognized by name by one of the joint chairs. All comments should be addressed through the chair.

When speaking, please speak slowly and clearly for the benefit of interpreters. Interpretation in this video conference will work like an in-person committee meeting. You have the choice at the bottom of your screen of floor, English or French.

I'll note, before we get started, that we are expecting bells at around 10 o'clock. Is there unanimous consent to continue for 20 minutes following the bells before adjourning?

[Some hon. members]

Agreed.

[The Chair]

Thank you. The clerk will notify me when we're 19 minutes past the bells.

[The Joint Chair, Liberal, Marc Garneau]

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

As individuals, we have Elizabeth Sheehy, professor emerita of law at the University of Ottawa. We are awaiting Dr. Eduard Verhagen, who is a pediatrician and head of pediatrics at the Beatrix Children's Hospital. We expect him to be online shortly. Finally, we have Dr. Mary Ellen Macdonald, endowed chair in palliative care. All three are appearing by video conference.

Thank you all for joining us this morning.

We'll begin with opening remarks by Ms. Sheehy, followed by Dr. Macdonald and then hopefully by Dr. Verhagen.

You will each have five minutes, which will be followed by questions.

Ms. Sheehy, you have five minutes. The floor is yours.

[Professor Elizabeth Sheehy, Professor Emerita of Law, University of Ottawa, As an Individual]

Thank you, Mr. Chair.

As mentioned, I'm a professor emerita at the University of Ottawa, where I taught criminal law and procedure for 34 years. I'm also the sister of Matthew, who has developmental disabilities and some physical disabilities. I have first-hand experience with the extraordinary wait-lists for supportive housing for people like my brother, and with medical professionals who repeatedly urged us to consider “do not resuscitate” orders when Matthew has required medical treatment.

I add my voice to the clear and unequivocal opposition expressed unanimously by disability rights groups across this country to yet another extension of MAID. I testified before the Senate committee that studied Bill C-7 in 2020 to oppose extending MAID to people with disabilities who are not dying. We lost that fight, and so the bonfire started. The wood was laid and a match was lit.

Our worst fears—that people with disabilities would seek MAID not because their disabling conditions are intolerable, but rather because of our failure to provide the social and economic supports they need to lead dignified lives—have come true. When this government then extended MAID to people suffering mental illness, it added accelerant to the bonfire. I wrote opinion pieces pointing out the discriminatory impacts on women, the fantasy that psychiatrists can distinguish between a mentally ill person who is suicidal and one who is expressing a rational wish to die, and the folly of accepting doctors' claims that they can determine that a person's mental suffering can never be alleviated.

Now, here we are, about to toss children into the MAID bonfire. This is what they are. They are de facto children unless and until some professional, not even the parent, decides they can be treated as adults for the purpose of deciding to die.

The proposals of some organizations, such as Dying With Dignity, are absolutely chilling. They appear to support a presumption that children who are 12 years or older have the capacity to elect MAID. This position is impossible to square with how we otherwise treat children. Twelve-year-olds cannot consent to sexual contact. We see the consequences of sexual activity as so life-altering and so full of potential for exploitation that we brook no exceptions. We prohibit many other activities to children, such as the consumption of alcohol or driving vehicles. We do this not only to preserve the life and well-being of children, but also to protect those who love them and other members of our community. How can we even consider allowing children to access government resources to end their own lives?

The MAID bonfire will now spread to neighbourhood trees, and no one's home or loved ones will be safe. What parent has not seen their teenager suffer deeply from anxiety, racism, misogyny, homophobia, depression or social exclusion? I know no one whose child has not struggled with at least one of these challenges.

We live in a historical moment where the rates of mental illness experienced by children and youth have never been higher. We know, too, that intergenerational trauma and sexual abuse play a huge role in generating the mental suffering of young people, and that disabled girls and indigenous kids are disproportionately at risk.

It's morally wrong to abdicate our responsibility to address these traumas and respond to young people's distress with every resource we have. It's wrong to tell them that doctors and governments will help them end their lives if they cannot see the light at the end of the tunnel. Our job is to give them that light, not help them snuff it out.

My heart breaks for the parents and communities who have lost their teenagers to suicide. They and their families will never ever be the same. As we know, suicide among young people can spread like wildfire. We have seen this in indigenous communities, where each young person's death threatens every other sapling. We see this phenomenon in other communities as well, where young people already struggling with alienation are devastated and demoralized by the deaths of their friends.

The proposal to extend MAID to teenagers, regardless of their parents' wishes, is a huge betrayal to those whose kids have taken their own lives and to all communities fighting to keep their teenagers alive. We must put a firewall around the MAID bonfire to at least keep children and teenagers away. We know that young people's brains do not fully mature until they're in their twenties. This makes it impossible for even mature youth to imagine the possibility of a life of purpose and joy when they are stuck in the muck of alienation or adjustment to disability or to their sexuality, or to comprehend the finality of death and the other devastation that their lost lives will wreak upon their families, friends and communities.

Extending MAID to mature minors is reckless. To trust that doctors can predict which young people cannot be healed or helped, or whether they have the maturity to make such irrevokable decisions, flies in the face of our not-so-distant eugenics past. To pass a law that would require communities and parents to do nothing when their young people throw themselves on the bonfire is to force us to watch our futures burn.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Ms. Sheehy.

We'll now go to Dr. Mary Ellen Macdonald for five minutes.

[Dr. Mary Ellen Macdonald, Endowed Chair in Palliative Care, As an Individual]

Good morning and thank you, Mr. Chair.

My contribution to this discussion is as a social science researcher with two decades of experience in palliative care research with both younger and older populations. Specific to mature minors, I was a member of the CCA expert panel working group for mature minors. I also supervised a philosophy student's master's thesis on the topic, which was published in the Journal of Medical Ethics in 2020, and my team recently completed a qualitative study engaging youth in focus group discussions regarding this potential legislation, with results having recently been submitted for publication.

What I want to focus on is how my research team, following the CCA report, has recently positioned itself to help advance the generation of empirical data to move these discussions forward. This position comes from a collective experience we had on the CCA expert panel, an experience of frustration that we were trying to advance policy and practice ideas without having ample evidence from youth themselves on the topic at hand. We continually circled back to the lack of research we could draw upon to help think forward about what MAID for mature minors could and should look like.

On the CCA panel, clinicians could reflect on their personal experiences with members of relevant populations, and lawyers could think about some adjacent case law, but overall it was clear that there was very limited national or international evidence that captured the voices and experiences of young people and their families regarding terminal illness, suffering, grief and bereavement. Evidence was even more scarce on the views and experiences of young people who may be made particularly vulnerable by the current state of practice, such as indigenous youth, young people with disabilities and those in the child welfare system.

As a researcher abiding by tri-council research ethics and community-based participatory guidelines, I take very seriously the ethical stance towards participants of “nothing about them without them”. It is not okay to be advancing research, policy or practices on MAID for mature minors without actively soliciting and listening to youth voices. The United Nations Convention on the Rights of the Child outlines how and why young people have rights to participate in matters that impact their lives and to express their views in any discussion that affects them based upon their own capacities. Given that young people remain ineligible for MAID, a form of end-of-life care that they may be interested in and may benefit from, it is reasonable to consider that their exclusion from conversations about MAID until this point has been in violation of the right to participate.

In the spirit of addressing this gap, with two colleagues, Franco Carnevale and Sydney Campbell, I have put forward a proposal to Health Canada through the health care policy contribution program. We were solicited by Health Canada to develop this proposal. However, it is not yet finalized and the budget has not been approved, so I'm just going to stay at a high level with respect to details about its design.

We have proposed a three-year study that will meaningfully engage with young people to generate data through focus groups, interviews and arts-based methods from which we can put forward evidence-based recommendations on the next steps pertaining to MAID for mature minors. We are starting with the premise that youth are agents with rights and we are proposing to proactively work directly with young people and their caregivers to understand what is important to them regarding clinical and policy discussions around MAID specifically, and also how they want to be involved in palliative and end-of-life policy planning more broadly.

We will spend the first year consulting with youth and caregivers about how the study should unfold. We have proposed including in our sample young people perceived as being particularly vulnerable, such as youth with underlying health conditions like cancer, with mental health conditions or with disabilities, and indigenous young people. We propose to create a coast-to-coast-to-coast sample involving young people throughout, starting at age 12, from design through to analysis and dissemination. Together with youth, we will produce both a descriptive report on the state of the situation and a more theoretical and ethically focused analysis of what should be done and how policy should move forward.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Macdonald.

For our third panellist, there was a misunderstanding and that person thought they were in the second hour. Fortunately, somebody from the second hour is here in the first hour, Dr. Arundhati Dhara, and is ready to speak. She is a family physician.

Dr. Dhara, if you're ready, you have five minutes.

[Dr. Arundhati Dhara, Family Physician, As an Individual]

This is unexpected, but thank you, Mr. Chair and members of the committee, for the opportunity to speak today.

I'm grateful to join you from Mi'kma'ki, the unceded territory of the L'nu.

I'm going to start with what I'm not. I'm not a lawyer. I'm not a bioethicist. I'm not a MAID scholar. I'm a generalist family doctor, and I have more than a decade in practice. I've also been a MAID provider since about 2017 as part of a full scope of palliative care work.

I'm going to tell you today what it's like to provide MAID and what the considerations for a MAID provision might be with regard to minors were it to become legal.

My first experience with MAID was with a dynamic, incredibly funny woman who did not qualify under the legislation at the time. I represented her third opinion because she didn't have a foreseeable death and wasn't suffering sufficiently under the legislation. She lived with constant chronic pain that limited her life, and she told me she was profoundly alone despite being very close to her family. She had plenty of joy, but she suffered nonetheless.

I remember that she gave her glasses to her daughters and she told them to do something useful with them. She then closed her eyes and made some very morbid jokes. We all laughed. Then she went to sleep, and then she died. It was the most profoundly patient-centred moment of my career up to that point.

Why am I telling you that story? This woman was in her nineties. The committee has asked me to think about MAID for mature minors. The truth is that the considerations for her capacity to give informed consent to that procedure are actually no different than they would be for a mature minor. Does she understand what's being offered? Does she understand the risks and benefits? Does she understand the alternatives?

Picture a mature minor, someone who happens to be under the age of 18. That age is mostly arbitrary; 18 is not a magic number. Minors already exercise autonomy over their bodies in other instances, and we don't require them to explore every option to some external standard of satisfaction for every medical procedure. The capacity to consent is specific.

As we move to expand MAID generally, there are a number of other considerations, including how we understand the developing brain and how we understand issues of mental health, which is soon to become an eligibility criteria. How that is or is not appropriately applied to minors would be an important consideration, and I don't feel qualified to understand the developing brain well enough to say that. In jurisdictions where mature minors do access MAID, it's actually quite rare. They tend to have had very long histories with their health care decision-making and with the health care system generally. That's the nature of illness in kids.

In family practice, I have the distinct privilege to see kids grow over time, which is to say that I watch them cognitively develop. I'm pretty confident that I could figure out whether a patient of mine was able to consent, but even if I couldn't, MAID providers exist inside a community of practice, which gives us a network to lean on for resources and for second, third and fourth opinions if we need them.

I want to close by naming the elephant in the room. There's a certain visceral revulsion to the idea that a child could suffer so much that they'd request an assisted death. How is it possible that that does not represent a monumental failure of our medical system? Surely better palliative care services and better social services—all of those things—would mitigate the need to request MAID.

It's okay to feel pain when a child suffers. We should. We would be monsters if we didn't. However, the existence of better treatments and better services does not negate our obligation to have equitable and humane access to MAID if it is appropriate. Respectfully, I think we are obligated to see past our revulsion. The right thing to do doesn't always feel good. In fact, a friend of mine who is an ethicist said that ethics only really come into play when everything makes you really uncomfortable.

We need to approach MAID for mature minors the same way we do for every patient: Each is unique and must be treated with careful consideration of their personal circumstances in the context of their life.

Thank you again for the opportunity to speak before you today.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Dhara.

I will now turn it over to my co-chair, Senator Martin, for questions.

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

Thank you.

Thank you to all of our witnesses for their testimony this morning.

I'm going to begin the first round and will call upon Mr. Cooper, who will have five minutes.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Thank you, Madam Chair, and thank you to the witnesses.

I'm going to direct my questions to Professor Sheehy.

We heard at our last hearing from a witness who noted that mature minors already make major medical decisions, including the decision to refuse life-sustaining treatment. That witness argued that it follows, therefore, that mature minors are as competent to make a decision with respect to MAID. Do you agree?

[Prof. Elizabeth Sheehy]

No, I don't agree. I think there's a substantial difference between withholding or ceasing treatment and the act of intervention of the state, with its resources, to end a life. I think we know that MAID is an exception to Criminal Code provisions that criminalize murder and assisted suicide. What we're talking about here is creating some sort of exemption from the criminal law for a specific category of young people.

Currently, withholding life-saving treatment is not an individual decision. It is a decision that's litigated through a court process. There are witnesses, an adversary process, a judicial decision, an open court and reasons for a decision. All of those things are safeguards when it comes to the kinds of decisions that involve the withdrawal of life-saving treatment. To move towards a regime of MAID for mature minors is a completely different exercise and one that's deeply concerning when you're thinking about the fact that this is state intervention in ending a life.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Thank you for that.

It was argued that mature minors understand what MAID is and have the capacity to deem their suffering to be intolerable. It was further argued that to not permit mature minors to make decisions around MAID and to not have such an exclusion would be discriminatory.

Can you comment on those two things? It's argued that mature minors can understand what MAID is and their suffering and are therefore competent to make such a decision, and that to exclude mature minors would be a policy that is discriminatory.

[Prof. Elizabeth Sheehy]

First, I'd say it's not discriminatory to exclude certain groups from MAID. We limit certain medical procedures to different age groups based on the risks. For this group, a lack of understanding of their fulsome future horizons, which is tied to the fact that their brains are still maturing, tells us that the risks are real and, given the finality of death, that the risks are acute.

I would also say that the group we're talking about that I'm most concerned about is young people with disabilities. We know that children with disabilities are more affected by suicidal ideation. Young people with disabilities absorb the social message that their lives are not worth living and feel anxiety about the burdens they place on their families. It's not really until they mature that they can see that this is actually a social issue. It's social discrimination against people with disabilities.

I think it's extremely dangerous to suggest that a young person, no matter how mature, can understand or predict their ability to accommodate life with disability and to find happiness in the future. I think it's actually deeply worrisome to suggest that we will accept a person's hopelessness, give up on them and allow them to access state resources to end their lives at that point.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

It was also noted that when it comes to medical decisions, those decisions tend to be based on capacity rather than a firm age distinction. What do you say about that? Is it somewhat arbitrary to say that at 18 you suddenly have the capacity to consent, versus at 17 and a half months?

[Prof. Elizabeth Sheehy]

I guess that depends on what you're talking about in terms of consent. If we're talking about medical treatments, the more serious the consequences of a treatment, the less likely it is that a court is going to say that a young person has the capacity. We can't really talk about capacity without also talking about what's at stake in either accepting or refusing treatment or asking for the intervention of the state to assist in suicide. The problem with a shifting age of capacity is this: Are we going to use courts to decide that?

I think it's much more important to have a firm age limit so we have a shared societal understanding of when and when not to allow access to MAID.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Professor Sheehy.

Next we'll have Madame Brière for five minutes.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

Thank you, Madam Chair.

Dr. Dhara, I will direct my question to you, and I will ask it in French.

You stated that in your 10 years of practice, you have administered medical assistance in dying. You also noted that there was no need to establish a standard of consent for every medical procedure.

Of the children you've encountered in your practice, how many might have been eligible for medical assistance in dying had it been possible for them to request it?

In addition, with respect to consent, should we talk about maturity rather than age?

[Dr. Arundhati Dhara]

The nature of kids is that they bounce back. Generally speaking, when kids are ill, even when they're really ill, they get better. The number of kids in my practice who have been so ill in a life-limiting or life-ending way has actually been fairly small. Even in the hospital, I can probably count on two hands the number of kids I've treated who, if MAID were available, would have been candidates in some way. That isn't to say that it shouldn't be available. A small sample size does not in fact make a piece of information or a policy decision not worth considering.

You speak about maturity, and I think that's exactly what we are talking about. It's the capacity to understand and the capacity to think about what the consequences of a decision might be. To that point, I would say that having a really robust understanding of what is being offered, of what MAID is, is in fact a criteria for eligibility. Without that clear, voluntary understanding, MAID simply wouldn't be on the table.

There are a lot of 90-year-olds I've seen who have requested MAID where I've thought, “Actually, I don't think they really do understand.” I would say that even “maturity” is potentially a difficult word. It's really about that procedure-specific capacity: “Do you understand what I am offering you right now, this thing, in this moment?”

In folks with dementia, there are often moments of lucidity when I think, yes, they have great capacity, and then there are moments when they don't. It's time-specific. It's incredibly specific.

I hope that answers your question.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

Yes, thank you.

You said that we should address the issue of mature minors' consent the same way we look at consent for all other patients.

Do you believe that the current eligibility criteria for mature minors are sufficient, or should we consider additional criteria?

[Dr. Arundhati Dhara]

I think it's something that, again, is really case-specific. There will be cases, I would argue, where it's pretty obvious that a 17-and-a-half-year-old, to use an example, would be fully able to understand and have the capacity to consent to a MAID procedure.

At the same time, there may be considerations of minors who have mental health issues that overlay a life-limiting condition and a number of different pieces where that capacity may be a little more difficult to sort out. In those cases, I would say that the network of practice that I talked about before—where MAID providers don't exist in a vacuum and there is access to different resources and to different providers who can help shed some light on what's going on for an individual patient at an individual time—would be really helpful.

I take issue, from an equity standpoint, with a blanket statement about age, condition or other sorts of things. I think it's a really complicated situation and incredibly person-specific.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much, Dr. Dhara.

[Élisabeth Brière, Liberal, Sherbrooke, QC]

Thank you very much, Dr. Dhara.

[The Joint Chair, Hon. Yonah Martin]

Next we have Monsieur Thériault for five minutes.