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

[The Joint Chair, Hon. Yonah Martin]

Do social factors have a greater or different influence on minors as compared to adults?

[Dr. Randi Zlotnik Shaul]

I'm not sure in terms of greater or less, but definitely significant.... I mean, again, if we're thinking in terms of moving forward in a multipronged way, it is really imperative that thinking about doing right by young people includes attending to social determinants of health and includes being cognizant of inequity related to palliative care.

Maybe that would be part of the conversation going forward if there is an expansion of MAID: that it go forward with attention to other places where we need to do better and a plan to do so.

[The Joint Chair, Hon. Yonah Martin]

My last quick question is this: Should a minor be disqualified from MAID due to their social circumstances, in some cases?

[Dr. Randi Zlotnik Shaul]

I don't think so. I mean, you would still go through the process of understanding and appreciating. In a sense, that would be somebody who is living with inequity then having a further inequity in terms of not being able to access assistance while being in a state of irremediable suffering.

I wouldn't say that should be disqualifying. If anything, that's an impetus on us to have to try to do better to address inequity that's existing in terms of social circumstances. This isn't a quick fix for sure, but this is a highlight of where we have to do better.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Martin, and thank you to our witnesses. This brings our panel to a close.

I'd like to thank Dr. Davies for being here with us tonight, as well as Ms. Milne and Dr. Zlotnik Shaul.

Thank you for providing your opening remarks and for answering our difficult questions, and for your expertise on this matter. We very much appreciate it.

With that, we will suspend momentarily to prepare for the second panel.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

I welcome the second panel.

We have the issue of a vote at 8:30, with bells going off at 8:00. Is there unanimous consent for us to go for 20 minutes after the bells?

[Some hon. members]

Agreed.

[The Joint Chair, Liberal, Marc Garneau]

Thank you. Very well.

We'll have to be very disciplined on the time.

With that, I'd like to make a few comments for the benefit of our new witnesses.

Before speaking, please wait until I recognize you by name.

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

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

You have the choice of interpretation in this video conference. At the bottom of your screen there is a choice of either floor, English or French audio. There will certainly be questions in English and in French.

When you are not speaking, please keep your microphone on mute.

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

They are all appearing as individuals.

We have Caroline Marcoux.

We also have Professor Roderick McCormick with us.

We have Timothy Ehmann, who is a medical doctor and a child and adolescent psychiatrist.

All three are appearing by video conference.

Thank you to all of you for joining us.

We'll begin with your opening remarks, which should be limited to five minutes.

I'll ask Ms. Marcoux to start off, followed by Dr. McCormick and then Dr. Ehmann.

Ms. Marcoux, you have five minutes. Please go ahead.

[Caroline Marcoux, As an Individual]

Thank you, Mr. Chair.

Good evening, everyone.

My name is Caroline Marcoux. I am the mother of the gorgeous Charles, whom I have with me, right here.

On July 30, 2019, Charles received a diagnosis of osteosarcoma, a cancer of the bones, in his right femur. At that time, Charles was 15 years and nine months old.

Over the next year, he went through a whole series of chemotherapy treatments and had major surgery on his leg to remove the mass. Charles was always cheerful, optimistic and smiling, as you can see. He was an exemplary and very resilient patient during his illness.

A few months after the treatments ended, he was told the cancer had returned, in both his lungs. He had surgery on each of the two lungs to remove the metastases, but in spite of this, the disease came again immediately after, not just in both his lungs, but also in his knee. Once the cancer had recurred twice, we know that the disease was irremediable and nothing more could be done to halt it. That was in January 2021.

As always, Charles accepted what was happening to him. Psychologically, he still felt well, but his physical health started to decline, bit by bit. He had less and less energy, less and less appetite, and more and more pain. In fact, from January onward, he was having about one good day out of two.

Still, he proudly completed an important milestone in the life of a 17-year-old young man: he got his driver's licence. At that point he was missing one lung, because his left lung was full of liquid and there was nothing more to be done for it. His driver's licence meant that he was able to enjoy his autonomy about three or four times in the week that followed. That was all. After that, he was no longer in shape to leave the basement of the house.

Starting then, and even a little earlier, all the medical care, emergency services and drug dosages were handled by the palliative care team. The team did its best, within the limits of the options available to it, but was never able to completely relieve the pain. That is without mentioning the side effects: Charles was hot all the time and slept very badly. The drugs were not doing the job. He took Dilaudid, morphine, fentanyl, methadone—everything he could get to relieve the pain. The number of drugs he was taking kept going up, because the pain and the symptoms were constantly increasing. His lungs hurt, his shoulders hurt, and he had a distressing loose cough. His condition was not improving.

At the beginning of July, shortly after he got his driver's licence, he was barely getting out of the hospital bed that was brought to the basement for him anymore. Most of all, he was fed up: fed up with doing nothing, fed up with watching television, fed up with being sick and fed up with not having any quality of life. That was his situation. He started worrying about death. He wondered when death was going to come, whether he would be alone when it did and how it would happen. He was calm and collected by nature, but he started having anxiety attacks, anxiety and panic attacks, which showed how completely powerless and at the end of the rope he was.

In about mid-July he started talking about medical assistance in dying. He talked to me about it and he talked to the social worker and the doctor. He could not go on suffering and waiting for death any longer. We knew that the end was imminent; that was not the issue. He would have liked to have the choice and control over the time of his death. That would probably have reassured him. What he said was that he would have liked to have control over the disease, in at least that respect, because he had not had any control for the previous two years. He had never talked about death before that point. He had always been positive. When he made that request, he was already in the terminal phase. We knew that death was imminent, but he had to wait, because he was then 17 years and nine months old.

It is inhumane for a mother to hear her child say: "Mom, do something, I can't take any more." I accompanied him in it, in his suffering, to the end. I would have liked to do as he wished and do everything I could to calm his anxiety and his pain. All the doctors could do, again, was increase the medication. He was having trouble talking, because he was very medicated. He wasn't eating. At least, he was able to express his needs and tell us what he wanted.

The only possible solution, at that point, was palliative sedation. One day, he asked for it. He was completely fed up and just wanted to sleep and not be aware of his condition. So he went into the hospital pediatric ward, because that is what he wanted. He was put into a state of induced sleep. We watched over him for 24 long hours, and his sleep did not seem peaceful. Again, it was as if the drugs were not enough to calm him, any more than they had been enough to relieve his pain before. He did not seem to be comfortable. As a mother, I had to see him in that state, not being able to understand his needs, waiting for him to be completely unconscious. It took 24 long hours.

He died on July 30, 2021, exactly two years to the day after his diagnosis. So he was 17 years and nine months old.

I lost my boy, but I hold onto the two promises I made him. First, the promise to go on the trip of his dreams to England. And second, at the point when he asked for medical assistance in dying, I promised him that I was going to do everything I could to campaign, or at least to speak up as I am doing tonight, so that it would become accessible to young people like him would like to have it.

Charles was a very mature young teenager, even before his illness. He lived with his disease for the last two years of his life, with a serenity that gives me the strength to get through this period, through his loss. I cared for him until the end, and I would have done it as long as he needed. I didn't want to lose my boy, certainly, but I could not see him suffer any longer, nor could he suffer any longer. He had truly reached his physical and psychological limits. I would have cared for him to the end, but I hoped not to have to care for him when he had reached a stage when he had lost his dignity. I hoped not to have to change his diapers and see him grow thinner until he was a walking corpse. I would have gone there, but I hoped that it would not be the case. Fortunately, when he died, he still had his gorgeous chubby cheeks, so we were spared that, but he was truly at the end of his rope.

I know that the decision to expand access to medical assistance in dying to mature minors is not to be taken lightly, nor did Charles, from the height of his 17 years, at the end of his life, take it lightly. It might not have hastened his death by much, since he was already at the end of life. The date he would have set might have been a few days after July 30. But he was ready and he deserved that choice. It would have been his decision, in the end. It would have been he who chose the time to leave and the people who would be with him. That is the only choice, or at least the last choice he would have been able to make in his life.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Ms. Marcoux, for that very personal and very moving testimony about your son Charles.

We'll now go to our second witness, Dr. Roderick McCormick.

Dr. McCormick, you have five minutes.

[Dr. Roderick McCormick, Professor, As an Individual]

Shé:kon.

My name is Dr. Rod McCormick. I'm Mohawk, or Kanien’kehá:ka. I'm also a professor and research chair in indigenous health at Thompson Rivers University. I live on my partner's first nations reserve of Tk’emlúps te Secwépemc, in Kamloops, B.C., and I'm the director of the indigenous research centre called All My Relations.

I'd like to thank the committee for the invitation to provide input once again on Bill C-7. Previously, I testified on the implications of Bill C-7 for those suffering from mental illness. I'd like to extend those views as they pertain to MAID for mature minors.

The expansion of MAID is occurring at too rapid a pace, in my opinion. I've learned through painful experience that when you're on a slippery incline or hill, or in this case a slippery slope, the best way to avoid falling is to take small, careful steps.

As I'm an indigenous health professor and research chair who has also had approximately 35 years of experience as a mental health service provider for indigenous people, my testimony will be from an indigenous mental health perspective.

I should start by saying that I have grave concerns over the extension of MAID for minors, and I use the term “grave” in a purposeful manner. As my partner and kids are members of Tk’emlúps te Secwépemc and I live in their community, I experienced first-hand the impact of the announcement of the 215 children's graves on the grounds of the residential school. I can clearly see the residential school from the windows of my house and can make out a glimpse of the fields in which the 215 children were buried in shallow graves.

This attempt to conceal the bodies is, in a way, symbolic of the numerous historical attempts by Canada to deal with what Duncan Campbell Scott referred to as the need to “get rid of the Indian problem”. Those attempts, as many of you probably know, consisted of forced starvation, forced sterilization, forced relocation to reserves with unsafe, unhealthy and crowded housing, the introduction of liquor, smallpox blankets, forced residential schooling, experimentation with malnutrition in residential schools, ignoring the contagion of tuberculosis in the residential schools, the ongoing child welfare seizure of children and the excessive imprisonment of indigenous peoples in the penal system. The list goes on.

What I'm saying is that because of the multiple ways Canada has utilized to eliminate indigenous peoples and culture, we are overrepresented at every stage of the health care system, including that of premature deaths. This may all seem overly dramatic to you, but do we really need yet another path to death?

My cynicism is partially based on decades of working with indigenous youth to help them attain and maintain a good and healthy life. As I mentioned in my previous testimony, I've worked with many indigenous youth in emotional pain who were able to recover from being suicidal. The common reflection they had upon recovery was one of relief that they did not choose a permanent solution to what proved to be a temporary problem. Getting the proper and timely help is key to survival.

There are many barriers to obtaining that help. Among them are a lack of accurate diagnoses and corresponding treatments, a racist health care system, a mistrust of a health care system that doesn't always have our best interests in mind, jurisdictional ambiguity and the abdication of responsibility by various governments. The big factor is the remoteness of our communities.

Living on reserve and/or in a remote location often means that health services are provided by nurses or nurse practitioners, who are often overworked and ill prepared to provide the range of services that are required. This is especially the case in the near total absence of palliative care services for indigenous children and youth.

In preparing this statement, I scoured the Internet looking for evidence showing that mental illness can be predicted to be irremediable, and I couldn't find any. Shouldn't public policy as important as this be informed by evidence?

Some argue that we'll be discriminating against minors and those with mental anguish if they are not allowed access to MAID. However, without evidence, are we not also discriminating against those very groups in another way?

Currently, I believe the law provides the option for the minor to self-assess as to whether various methods of treatment are appropriate for them, and to refuse such treatment they deem inappropriate. From my clinical experience, most youth are not aware of the diverse treatment options they have, nor do they have an accurate understanding of them. Granted, for indigenous youth, those options might not even be available to them in their communities, but shouldn't equal health care in Canada be available to all Canadians?

Can teenagers whose brains are still developing make such important decisions?

Although I obviously cannot speak for all indigenous peoples, the pattern I am seeing with the introduction and expansion of this legislation is that of an abdication of responsibility by the Government of Canada and, by extension, by the citizens of Canada.

Instead of making every effort to provide the range of mental health services needed by indigenous youth to overcome their pain, we are instead imposing upon them the burden of deciding whether they should choose a government-sanctioned, permanent solution to what could easily be a temporary problem. That is where mainstream Canadian cultural values fail us all. The emphasis on individual rights and individual freedom is not balanced with the need for collective responsibility.

In closing, I would like to read you a statement by the existential psychiatrist, Dr. Viktor Frankl.

Freedom, however, is not the last word. Freedom is only part of the story and half of the truth. Freedom is but the negative aspect of the whole phenomenon whose positive aspect is responsibleness. In fact, freedom is in danger of degenerating into mere arbitrariness unless it is lived in terms of responsibleness.

I urge this committee to advocate for the Government of Canada and the provinces to accept their collective responsibility to not expand MAID to minors but to instead improve the mental health services available to indigenous youth and all the youth of Canada.

Nia:wen. Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. McCormick.

We'll now go to Dr. Ehmann.

Dr. Ehmann, you have five minutes.

[Dr. Timothy Ehmann, Medical Doctor, Child and Adolescent Psychiatrist, As an Individual]

Thank you for the invitation to stand before this committee.

My name is Dr. Timothy Ehmann, and I have been practising child and adolescent psychiatry for 10 years in a variety of in-patient, outpatient, academic and community settings.

I would like to begin my testimony by stating categorically that to extend the current MAID regime to minors—mature or otherwise—is negligent and irresponsible.

This debate began shortly after I began practice and has been like a dark cloud looming over my early career. I have followed as the Government of Canada has forged ahead despite many warnings to desist. I am adding my voice to say that it would be wise for the government to proceed no further down this dark path.

The proposition that death is a legitimate treatment for any form of suffering is false.

The proposition that the physician community can reliably assess the competence and capacity of minors to consent to death is false. It is not supported by any available research on the subject. Any physician who peddles this message is doing little more than saying, “Trust me; I'm a doctor.”

There does not exist any standardized, reliable and valid assessment for determining the capacity and competence of minors. Research has demonstrated that unaided competence judgments, even from seasoned and otherwise skilled physicians, are unreliable. In a routine medical practice, children are oftentimes incompletely informed, and the communication between an adult physician and child is oftentimes flawed.

There are many systemic influences on a child's decision-making. No decision is made free from influence. This raises the important question of how to evaluate precisely how free the child is in any decision. One new systemic influence just might be the cultural shift that the Government of Canada is propagating, which is moving our society increasingly towards a culture of despair.

The government messaging that it will offer death as a solution to life's suffering is suicide inducement. We are well aware of the phenomenon of suicide clustering in youth, such as on reserves, and that messages of despair increase suicide rates.

It is a difficult time to be a child in Canada.

MAID is not an evidence-based medical practice. As such, compelling physicians to adopt this practice through law sullies and undermines the integrity of the medical profession. Canadian physicians have been trained to practice modern, evidence-based medicine directed by scientific fact, not postmodern, ideologically-based medicine directed by political authorities.

MAID is an experimental practice without pre-existing safety data, adverse outcomes reporting, or adequate safeguards and accountability. The Government of Canada needs to hold itself to the same level of accountability and standard as it would hold any pharmaceutical company before a new drug or treatment is introduced to the Canadian population. We do not subject children to high-risk experiments.

Minors are a categorically vulnerable population. Postmodern philosophies that postulate that to exclude vulnerable populations from their right to death is to discriminate against them are shallow and dangerous. Legislation that is undergirded by these philosophies is a risk to our children.

The Canadian government and its representatives are conducting themselves paternalistically with regard to the MAID regime.

Organizations representing disadvantaged and vulnerable groups within our society that have presented evidence to this committee have been disregarded. These representative groups have asked for either safeguards or exclusion from eligibility for MAID for their communities and been denied such. The Government of Canada has effectively communicated to these groups that the government knows better what is in their interests than these vulnerable populations themselves do.

In modern society, with modern medicine and scientific advances, the need to kill a child does not exist. Why then the Canadian government's headlong rush to open up the MAID regime to minors?

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Ehmann.

We'll now go to questions. I'll pass it to my co-chair, Senator Martin.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

I'm just wondering if MPs are all right if we do four-minute rounds. Is that okay?

Mr. Thériault, do you agree?

[Luc Thériault, Bloc, Montcalm, QC]

Yes.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

We'll begin with Mr. Cooper for four minutes.

Are you sharing—

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

Thank you, Madam Chair. I'm going to share one minute of my time with Madame Vien.

Dr. Ehmann, some witnesses who have come before the committee have noted that mature minors make complex and significant medical decisions, and therefore it follows that MAID ought to be expanded to mature minors. What do you say?

[Dr. Timothy Ehmann]

What complex decisions are you referencing?

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

An example would be the decision to end life-sustaining treatment.

[Dr. Timothy Ehmann]

What is a minor's capacity to end a life-sustaining treatment? I don't know the details as well as probably some of the lawyers of the case, but I believe it was recently ruled on in A.C. v. Manitoba. I know that it's a complex assessment. It takes into account the emotional, intellectual and psychological state and the maturity of the child. The context occurs not just with the child alone but also in the broader context of the family.

Of course, in our culture we look at children as individuals. As adult assessors, we're trying to determine at what point they have the capacity or the intellectual ability that we possess to make our decisions. One thing we forget about is that there's a theory that children actually are one part of a larger organism, that larger organism being the family. It's a very complex decision.

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

How would you distinguish that for MAID, for example? It's a broad question, but the point being made is that if mature minors can make some of these life-altering medical decisions, then why shouldn't they also have the option of MAID?

[Dr. Timothy Ehmann]

Right: Why shouldn't they have the option that we're giving adults presently? Refusing a life-sustaining treatment and asking for a treatment where the objective is death are fundamentally and categorically two different things. You can't compare the two.

[The Joint Chair, Hon. Yonah Martin]

You have 40 seconds, Mr. Cooper.

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

Okay.

You spoke about research with respect to competence judgments and the unreliability of such judgments. Can you expand on that research?