Evidence of meeting #11 for Medical Assistance in Dying in the 44th Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was minors.
A video is available from Parliament.
Senator, Saskatchewan, CSG
You said that age 12 would be a number you could live with for someone showing decisional capacity. Is that recognized anywhere else in the world or in any other field?
Prof. Constance MacIntosh
That number comes from the psychological literature on youth and medical decision-making. It's the youngest age that has been identified where it's considered to be plausible that a youth would have decisional capacity.
The Joint Chair Hon. Yonah Martin
Thank you both for your testimony.
I'm still kind of shaken by 12-year-olds being considered youth. I think we call them “tweens”. In every other context we have parental consent, even to take photos in a classroom. I was a teacher for 21 years. I'm still quite shaken by that number. I think parental consent would absolutely be important.
Are you concerned how expansion to children might affect children in welfare systems, indigenous youth and children with disabilities? The CCA report notes a paucity of literature and therefore a failure to capture their voices.
We heard time and time again that the indigenous communities have not been consulted. Even considering an expansion of MAID just seems too soon and really against what we're trying to do, which is consult with many of these most vulnerable groups. Would you comment on this fact, please?
Professor MacIntosh.
Prof. Constance MacIntosh
If the youth is in distress or in foster care, these are all things that I would think would result in a physician concluding that they weren't making a free decision, if they came to them seeking medical assistance in dying.
I don't know if you're hearing from the voices of families with youth who are living with complex and painful illnesses. I would hope that you are. I would also hope that you continue a robust consultation with indigenous communities, because I certainly couldn't purport to speak for their views here.
Legal Counsel, College of Physicians and Surgeons of Saskatchewan
Yes, thank you.
One of the very real challenges that the Council of Canadian Academies faces is that the viewpoints of indigenous communities are by no means common. The range of viewpoints is very large. Some of them would very likely be completely opposed to any concept of medical assistance in dying. Others would be much more accepting. That's the extent to which they were able to determine what the viewpoint of indigenous communities might be. Certainly consultation is an important aspect of how we operate in Canada. I do concur that there hasn't been a body out there to do those kinds of consultations.
If indeed the purpose is to alleviate suffering of individuals who are suffering intolerably, I would ask the question of whether it's an appropriate response to say that because there hasn't been enough consultation, the 16-year-old with terminal illness, who is in intractable pain that can't be controlled, will just have to wait while we make our decision. I personally would think that's an unacceptable approach.
Thank you.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you to our two witnesses, Professor MacIntosh and Mr. Salte. Thanks for taking the time to answer the committee's questions and for your opening remarks on this particularly challenging question of mature minors. We very much appreciate your input.
With that, colleagues, we will bring this panel to a close and prepare for the next panel.
We are temporarily suspended. Thank you.
Liberal
The Joint Chair Liberal Marc Garneau
I call this meeting to order so that we can begin our third panel.
Before we start, just for the benefit of our witnesses, before speaking, please wait until I or my co-chair recognizes you by name. All comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly for the benefit of our interpreters because some of this will happen in English and French this evening.
Interpretation in this video conference will work like it does for an in-person committee meeting. You have the choice at the bottom of your screen of either the floor, English or French. When you are not speaking, please put your microphone on mute.
With that, I would like to welcome our witnesses for panel three who will discuss the issue of medical assistance in dying in the case of mature minors.
We have this evening two witnesses, Mr. Franco Carnevale, professor and clinical ethicist, as well as Dr. Alisha Montes as an individual.
Thank you for joining us.
We'll begin with opening remarks by Mr. Carnevale. He will be followed by Ms. Montes.
In each case, you will have five minutes for your opening remarks.
We'll start with Mr. Carnevale. Please go ahead.
Franco Carnevale Professor and Clinical Ethicist, As an Individual
Good evening.
I'm honoured to have this opportunity to appear as a witness for this special joint committee.
I'm speaking to you as a clinical ethicist who works with young people, including dying children and youth, and their families. I'm also speaking to you as a childhood ethics researcher. I founded and lead a childhood research program called VOICE, which is based at McGill University. I'm here to share what I've learned from working with young people, their families and those who work with them.
My comments this evening are drawn from a report that I was asked to prepare in 2021 by Dr. Michel Bureau, chair of the Quebec end-of-life commission. I'll refer to this work as my 2021 Quebec report.
Dr. Bureau asked me to examine views within the McGill University network regarding the potential inclusion of some minors in the provision of MAID—medical assistance in dying—so that his commission could consider this information in their deliberations. I submitted my report to him on May 27, 2021, and he's given me permission to share that report with this committee, which I've submitted as an addendum to this statement.
Moreover, I was part of a 14-member pan-Canadian expert panel working group on MAID for mature minors convened by the Canadian ministers of justice and health to examine the evidence regarding the inclusion of mature minors in MAID. The results of our analysis are documented within our final report, published in 2018. That report is likely the most comprehensive and robust examination of this topic, which I hope this committee will consider seriously.
A major concern highlighted within that report was that youth input has been largely absent in discussions about MAID for minors. To help redress this problem, I submitted as evidence videorecorded interviews that I conducted with disabled youth leaders at Holland Bloorview Kids Rehabilitation Hospital in Toronto. For details on those interviews, see pages 122 to 123 in the English version of the report. Translation is available in the French version as well.
In preparing my 2021 Quebec report, I conducted consultations with the Youth Advisory Council and the Indigenous Youth Advisory Council of the VOICE childhood ethics program. I also consulted with parent and family representatives within pediatric services, medical and nursing leaders within various clinical services, pediatric palliative care researchers, the clinical ethics committee at Le Phare, Enfants et Familles, which is a pediatric hospice, and the child and youth mental health ethics committee at the Douglas Mental Health University Institute in Montreal. The latter was to examine whether some minors should be considered eligible for MAID solely on the basis of a mental health problem. The detailed results of this investigation are described in the 2021 Quebec report, which I've submitted to this committee.
I'll briefly highlight some of the conclusions and recommendations from that report. They include the following.
There are strong disagreements among clinicians regarding the justifiability of MAID for some minors. Some clinicians described clinical trajectories that correspond with those of adults who could be eligible for MAID. A number of medical conditions are described in my report for which these clinicians considered MAID could be a reasonable option for some minors. In contrast, some clinicians stated categorical objections toward making any minors eligible for MAID.
Clinicians also stated concerns about ways in which potential risks or vulnerabilities associated with MAID could amplify existing inequities for some minors. There was a consensus among the groups that I consulted that MAID should not be made available for youth for whom a mental disorder is their sole underlying medical condition, chiefly because they could not identify any clinical scenarios that they could characterize as irremediable or in an advanced state of decline that could not be reversed.
Given the vulnerabilities that may be a concern for some minors, special attention should be devoted to the safeguards that should be in place to ensure that all minors are treated safely. At the same time, it is important these safeguards do not operate as onerous obstacles that can create discriminatory inequities regarding access to MAID.
While ensuring that minors’ vulnerabilities are adequately safeguarded, we should not perpetuate common tendencies to under-recognize and devalue their capacities, aspirations and concerns as moral agents. Any initiatives to include or exclude minors from eligibility for MAID need to be based on the latest state of knowledge in child and youth studies, working in consultation with youth advisers.
In conclusion, an examination of whether or not some minors should be eligible for MAID should involve meaningful consultations with youth groups as well as youth leaders. Moreover, consultations with indigenous leaders and communities are necessary to ensure that concerns and impacts that may be specific to the experiences and vulnerabilities of indigenous youth are respectfully addressed.
I thank you.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Mr. Carnevale.
We'll now go to Ms. Montes.
Ms. Montes, you have five minutes.
Dr. Maria Alisha Montes Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
Thank you, Mr. Chair.
Thank you for the invitation to speak. My name is Dr. Alisha Montes. I'm a clinical associate professor of pediatrics at Memorial University in St. John's, Newfoundland. I was also awarded a Rhodes Scholarship, and I completed my master's in bioethics and public health at Oxford University. My practice is comprised of children from birth up until age 18, and I have a special interest in developmental pediatrics. I am also a mother of three children.
Some words I would use to describe my own adolescence are tumultuous, stressful, hopeless and traumatic. I was an obese teenager who came from a broken and chaotic home. I was abused as a child and raised by a single mother who had PTSD. I was severely bullied as a teenager. I found it very difficult to function while at school and in my social circles. I had many years when I felt hopeless and wanted to die due to intolerable social and psychological suffering. But with a lot of support, encouragement, mentorship and appropriate access to medical care, I was able to overcome my struggles. I have been able to live a very full and meaningful life. If MAID was legalized, that may have been the end of my story. My future life was full of potential, and I am so grateful to be here today, speaking with you.
Studies show that the frontal lobe is not fully developed until early adulthood. The frontal lobe is very important for coordinating executive functions, including the balancing of risks and rewards and decision-making. This explains why adolescence is a highly vulnerable time for risk-taking behaviours.
In pediatrics we practice harm reduction, which is a public health strategy that was developed to reduce the negative effects of risky behaviours and to mitigate the risk of injury and prevent premature death in adolescents. I would argue that MAID for mature minors carries the highest amount of risk, as the consequence is death. It's irreversible. We need to ask ourselves if we should be legalizing this for mature minors when biology shows us that the ability to balance risks and rewards is one of the last areas of the brain to mature.
The Supreme Court of Canada recognizes that capacity for decision-making of children must take into account the child's mental, emotional, physical and developmental stage. The courts apply a sliding scale to capacity, meaning that decisions that carry grave consequences require more scrutiny. In some cases, a total prohibition is necessary to avoid future harms, such as with marijuana, alcohol, cigarettes and illicit drugs. I believe we have a duty to protect adolescents during this time of brain maturation. The legalization of MAID does the exact opposite of harm reduction. It exposes children to the very dangerous choice to end their lives prematurely and with the support of the Canadian government.
Based on my experience, giving adolescents the option to end their lives prematurely is not what they want or need, as the majority of their suffering is not because of their mental or physical conditions. It is due to social stigma, poverty, lack of access to resources and tumultuous home lives. Seventy-five percent of children with mental health disorders do not have access to specialized treatment. Here in Newfoundland, there's a one-year waiting list to see a child psychiatrist. We know that 70% of mental health disorders begin during childhood or adolescence. MAID is not the solution to these troubling statistics. We must spend our time and resources improving access to specialized care and listening to the voices of youth to ascertain how we can support them during this very difficult developmental period.
What kind of message does it send to suggest MAID when an adolescent is struggling through this difficult developmental time? Instead, we must believe in them. We must give them a reason to hope. We must delight in their individual talents, mentor them and teach them the important skills necessary to overcome their challenges and be resilient.
When adolescents want to end their lives, parents do everything they can to prevent them from committing suicide. I know this through my own clinical experience and as a mother. We know that the parental relationship is very important and integral to children's development. It even predicts such long-term health conditions as mental health wellness and the ability to cope and to maintain meaningful relationships. We need to carefully consider and study how this may negatively affect parental relationships and have the propensity to cause ripple effects through the family and cause trauma that may have lifelong negative effects.
Finally, the CCA report also noted that there is no robust evidence that captures the voices of the youth on this matter. It is troubling that the views of minors with disabilities, indigenous youth and those in the welfare system were not captured in the literature.
In medicine, we make decisions based on robust evidence. Why are we rushing to legalize this when there's a paucity of evidence and all of the integral voices have not been captured?
Thank you very much for your time.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Dr. Montes.
I'll turn it over now to my Joint Chair, Senator Martin.
The Joint Chair Hon. Yonah Martin
Thank you.
We'll begin the first round of questions with Mr. Cooper.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
Thank you, Madam Chair.
My questions are for Dr. Montes.
Dr. Montes, in the last panel, we heard what I would characterize as pretty shocking testimony from one witness, Professor MacIntosh, who asserted that children as young as 12 have the potential capacity to make a decision to terminate their lives. Of course, 12-year-olds are years away from voting and from being able to make other adult choices. In the province of Quebec, the Consumer Protection Act bans commercial advertising that targets youth under the age of 13.
In 2017 the Senate unanimously passed Bill S-228 that prohibits the marketing of food and beverage products to those under the age of 17.
How do you square that with Professor MacIntosh's assertion that 12-year-olds can make a decision to terminate their lives?
Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
I think it's important, obviously, that we count the voices of children and adolescents. It's very important that we hear what they have to say, and, in pediatrics, we have to balance the voices of the children with many other things, one being the risk of the decision.
As I said, we use the principle of harm reduction, and some things just require complete prohibition because we know that, given their brain biology, they just do not have the ability to make these very risky decisions. Like you said, there are some things that we need to completely prohibit, and so I feel that, due to the fact that this is such a high-risk decision that's irreversible and ends in death, most definitely we need to have complete prohibition, because we know that developmentally their brains are not fully developed.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
Thank you for that.
One could say that, in the case of a 12-year-old, that's extreme, but what about when we're talking about a seventeen-and-a-half-year-old? Professor MacIntosh said that it's arbitrary, obviously, establishing a floor of 18.
Could you maybe address that point?
Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
I'm not able to speak outside of my scope of practice, which is 18, but I would advocate that, for all children who come under the realm of pediatrics, which is zero to 18, there be complete prohibition, because we know that the science is that their brains are not fully developed.
Conservative
Michael Cooper Conservative St. Albert—Edmonton, AB
You would submit that expanding this below 18 would put vulnerable young people at risk.
Going back to the testimony of Dr. MacIntosh, she said that a safeguard that she would advocate is the palliative care option.
What is the state of palliative care for young people in Canada today, and would you agree with that recommendation?
Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
The state of palliative care is that there's not good access to palliative care. I don't have the actual statistics, but I know that here in Newfoundland, for example, we do not have a palliative care specialist.
Before we go and legalize this, we have to make sure that we have appropriate access to these services, specifically palliative care, and we have very good technology now so that children should not endure intolerable physical suffering. I have seen, through my clinical practice and also personally—I had a nephew die of a congenital cardiac defect—that a lot of the suffering these families are enduring is because they're frustrated that there's a lack of access to care. They're not receiving the appropriate treatment. There are long wait times. We need to address these before we move ahead with this legislation. We need to make sure that everybody has equality and, specifically here in Newfoundland, we deal a lot with the indigenous population. There are no services in Labrador. They have to fly down for all of their pediatric services, so this is a problem we need to address before we move forward with this legislation.
The Joint Chair Hon. Yonah Martin
Thank you.
Next, we have Mr. Hanley.
You have five minutes.
Liberal
Brendan Hanley Liberal Yukon, YT
Thank you to the two panellists for the very interesting testimony.
I'm going to let you know that I'm new to this committee, but as a former practitioner and public health physician, I'm not completely new to the issue of MAID.
I want to ask you, Ms. Montes, a question on what you call the “prohibition” approach until a certain age, applied for certain conditions. Maybe you can comment. At what age do you consider the frontal lobes have achieved maturity and that executive functioning is, in fact, now at adult stage?
Clinical Associate Professor of Pediatrics, Memorial University, As an Individual
I'm sorry, can you repeat the question?