Evidence of meeting #25 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 recording is available from Parliament.
Senator, Quebec (De Lorimier), PSG
We're not talking millions and millions. We're talking—
Endowed Chair in Palliative Care, As an Individual
No, absolutely not. I'm a qualitative researcher, so our budgets are generally quite small.
Senator, Quebec (De Lorimier), PSG
Do you think that within three years we could get all the information that you propose to gather?
Endowed Chair in Palliative Care, As an Individual
I believe so. We were very careful with the scientific design of the study. As I said, we're starting at a zero baseline. There's very little data, so any data would be useful.
We have tried to design a robust study that could be completed in three years and that would give us a lot of information about different jurisdictions and different populations.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Senator Dalphond.
Senator Martin, you have the floor for three minutes.
The Joint Chair Hon. Yonah Martin
I will continue with Dr. Macdonald.
Dr. Macdonald, as you say, there is such a lack of data and specifically a lack of Canada-specific data, which is very important.
I want to ask whether you believe this essential data will be important for lawmakers, especially as we consider any expansion of MAID for minors. How essential will this data be for us?
Endowed Chair in Palliative Care, As an Individual
In my professional opinion, it's so essential to have youth opinions, perspectives and experiences at the table as we're having these conversations. I think it's absolutely essential.
By youth, I'm talking about individuals who are embedded in communities and in families. In our design, we intend to see these individuals as embedded so that we're having conversations with caregivers, parents and health care providers to get that whole context. I think that's really important data moving forward.
The Joint Chair Hon. Yonah Martin
Yes, I absolutely agree with you. As a parent, I think it would be very important to look at the response from parents and such individuals.
Professor Sheehy, you noted that you're concerned that MAID for mature minors could be abused regarding certain marginalized populations. Could you further elaborate on that point?
Prof. Elizabeth Sheehy
Well, to elaborate I would simply say that we know the rates of mental health challenges are extremely high among children with disabilities, and we also see those kinds of rates of struggle with respect to first nations kids living off reserve. We know that these populations will be most affected, as will kids living in poverty and isolation. These are the kids who are going to be most vulnerable to trying to access MAID, and I'm deeply concerned about the discriminatory impacts.
I guess the other aspect of this is our very limited availability of palliative care in Canada, particularly in rural areas. We know that only 15% to 30% of Canadians have access to palliative care. Palliative care is so much more important, and I think MAID unfortunately is the cheap and fast solution compared to investing the resources we should be investing to ensure that all Canadians who are dying have access to good palliative care.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you very much, Senator Martin.
This brings our panel to a close.
On behalf of the committee, I would like to thank Ms. Sheehy, Dr. Macdonald and Dr. Dhara for their testimony this morning on a very important subject. We very much appreciate you being with us.
With that, we will adjourn temporarily as we set up for the second panel. Thank you.
Liberal
The Joint Chair Liberal Marc Garneau
Colleagues, we will resume a little early, but we need that extra time. Thank you very much.
With that, I would like to welcome the witnesses for our second panel.
We have with us in the room Dr. Gail Beck, interim chief of staff and clinical director of the youth psychiatry program at the Royal Ottawa Health Care Group; Dr. Eduard Verhagen, pediatrician and head of pediatrics at the Beatrix Children's Hospital, by video conference; and Mr. Neil Belanger, chief executive officer of the Indigenous Disability Canada organization, also by video conference.
Thanks to all of you for joining us.
Our procedure today is to give you each five minutes to make introductory remarks. That will be followed by questions.
With that, I'd like to offer Dr. Beck the opportunity to take the floor for five minutes.
Dr. Gail Beck Interim Psychiatrist-in-Chief and Chief of Staff, Clinical Director, Youth Psychiatry Program, Royal Ottawa Health Care Group, As an Individual
Thank you.
Good morning. Bonjour. Kwe.
I'm Dr. Gail Beck. I am the interim psychiatrist-in-chief and chief of staff at the Royal Ottawa Health Care Group, a psychiatric hospital based in Ottawa. I served on the expert panel on the state of knowledge of medical assistance in dying, specifically on the mature minors working group. My remarks this morning really reference that report.
I want to call attention to a couple of those areas, particularly in relation to capacity, and comment that the areas where clinicians struggle with patients and their families considering MAID for mature minors include development, both cognitive and psychosocial. One of the things in particular to highlight from the written remarks you received is the fact that development of cognitive skills continues well into a person's twenties and mid-twenties, and while this goes beyond the age of mature minors, it's important that clinicians keep this mind. As my hospital reopens its medical assistance in dying committee, we are keeping this very much in mind for all of our patients.
For us, culture is also a consideration. For any of us who manage the care of youth, it's always necessary to work closely with families. We try very hard to be humble in consideration of a family's culture and of a family's influence on a young person with a serious illness, especially when that illness is irremediable and causing considerable suffering.
Finally, family and other relationships are very important to youth, but independence in decision-making is something that many of them are coming to grips with. There's nothing that causes a young person to grow up more than suddenly having a chronic and especially serious illness that can cause death. When we consider the assessment of these young people, we're very careful to make sure that we balance the considerations of their families as well as their own personal developing independence.
In closing, I want to thank you all for the opportunity to address this Special Joint Committee on Medical Assistance in Dying. I would be happy to address any questions you have.
Thank you.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Dr. Beck.
We'll now go to our second witness, Dr. Eduard Verhagen.
Dr. Verhagen, you have five minutes.
Dr. Eduard Verhagen Pediatrician and Head of the Beatrix Children's Hospital, As an Individual
Thank you very much.
I might be able to add a bit of knowledge from a country that has some experience in medical aid in dying for mature minors. I'm a professor in pediatric palliative care, and I'm one of the authors of “The Groningen Protocol for newborn euthanasia”.
As important background, I'd like to share with you the situation in the Netherlands. We have a euthanasia law that starts at the age of 12, so those who are 12 years old or older can ask for euthanasia. Parental consent needs to be present until the child is 16 years of age, but if the parent and child disagree on the request, we follow the child. That is in the law.
We've had seven cases up to now of minors asking for euthanasia and whose requests were granted. Most of them—six out of the seven—were 17, and one was a 16-year-old. They all suffered from untreatable end-stage cancer, and they were suffering unbearably. That is one of the items that need to be fulfilled to get euthanasia.
This is infrequent. We have a population of 17 million people, and it has been done seven times, I think, in the last 15 years. All cases were reviewed and published and can be accessed by everyone.
An interesting development has been what we call neonatal euthanasia. We have a legal regulation in the Netherlands that allows parents of newborns up to the age of 12 months to request euthanasia if unbearable suffering is present. If both parents agree, there are some other requirements that need to be fulfilled. All cases must be reported and reviewed. Since the regulation came into place, we've had three cases of neonatal euthanasia in around 15 years. All cases that were reported were reviewed and considered carefully. It's very infrequent, but it is legal; it is a possibility.
The most recent development, which we just finished two years ago, is a four-year study of how children die in the age group of one to 12. This was qualitative research. We've come across some parents who have reported terrible deaths for their children. Some of them had brain tumours. Some of them had other diseases. These parents all asked for the possibility of euthanasia similar to neonatal euthanasia. This request was forwarded to the minister of health, who decided that a regulation should be made as an extension of the Groningen Protocol to include one- to 12-year-olds who are legally not capable of asking for formal euthanasia as written down in the law.
That regulation is now being designed. It's with the ministry of health at this stage, and at the end of this year we'll hear how the final formulation has come along. Personally, I expect that during the course of 2023, the Netherlands will allow euthanasia for minors between one and 12 years of age. Having said that, I'm also convinced that the number of cases we'll see will be as low as in newborns or even lower. However, the main strength of the regulation is that we're talking differently to parents. We can provide and discuss all the options that are available. They have a possibility, if their child's suffering gets awful, of asking for euthanasia.
Practice has shown, both in children above 12 years of age and in newborns, that this doesn't occur very frequently. Three cases in 15 years is not much. Yes, there is a development going on in legalizing deliberate life-ending for minors, but the biggest strength is that it allows a discussion about quality of life and quality of death that currently cannot be held as it should.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Dr. Verhagen.
We'll now go to our third witness, Mr. Neil Belanger.
Mr. Belanger, you have five minutes.
Neil Belanger Chief Executive Officer, Indigenous Disability Canada
Thank you, committee members.
My name is Neil Belanger and I am a member of the Lax Seel Clan in the House of Nika'teen of the Gitxsan Nation. I am also the chief executive officer of Indigenous Disability Canada. For the past 30 years, I have worked in a variety of roles in the disability and health sectors.
Before I continue, I would like to take this time to acknowledge the traditional territories and peoples of the Songhees and Esquimalt nations, whose territories I work and live on and. I'm presenting from them today.
November 2022 marks the eighth anniversary of Indigenous Disability Awareness Month, an initiative created to celebrate indigenous people with disabilities and the overwhelming contributions they make to all our communities. It is with irony that today, while celebrations of indigenous people with disabilities are happening across Canada, we are meeting here to discuss state-assisted death for indigenous children under the MAID regime.
The United Nations Declaration on the Rights of Indigenous Peoples, UNDRIP, received royal assent in Canada in 2021. The declaration provides that member states must consult and co-operate with indigenous peoples on certain matters, such as legislative or administrative measures that may affect them. This is in order to get their free, prior and informed consent.
Within the reports submitted by the expert panels regarding MAID for mature minors and MAID for mental illness, it has been verified that no tangible engagement or consultation with indigenous peoples on MAID has yet occurred. Despite this reality and the overwhelming testimony of representatives from the indigenous and disability communities against the expansion of MAID, as heard in previous sessions, as well as the countless news stories and social media posts—nationally and internationally—expressing dire concern about the current state of medical assistance in dying, the slippery slope of MAID remains unfettered.
This begs the question as to why Canada, this committee or anyone would presume to have the authority to make recommendations or implement actions for the expansion of state-assisted death and suicide for indigenous children, indigenous persons with disabilities and indigenous persons with mental illness as a sole condition, without first engaging the very people whom these proposed changes will target. This is difficult to comprehend, particularly considering that Canada has exempted first nations communities from the Accessible Canada Act until 2026 due to insufficient engagement with indigenous communities and, further, to better understand the accessibility barriers facing indigenous peoples with disabilities. Canada additionally states that this exemption reflects the Government of Canada’s commitment to advancing reconciliation with indigenous peoples.
Expanding MAID to include mature minors' mental health as a sole condition and other proposed changes to MAID, without comprehensive consultation with the indigenous peoples of Canada, flies in the face of reconciliation, is a further marginalization of indigenous peoples and is the continuation of the destructive colonial systems and their paternalistic mindset of “trust us; we know what's best”. The lack of any tangible consultation with indigenous peoples of Canada should compel you as a committee to advise the government that in the spirit of true reconciliation, out of respect for the principles of UNDRIP and to authentically honour and fulfill promises made to the indigenous peoples of Canada, this committee’s current work cannot continue and that recommendations regarding the expansion of MAID cannot be made or endorsed.
While I am uncertain as to whether this committee would take such a step, I am certain that if the eligibility of state-assisted death is expanded to include mature minors at the end of life, rather than providing adequately funded and comprehensive palliative care, this will result in the expansion of MAID to include mature minors not at the end of life who live with disabilities or have mental illness as a sole condition. This is not what might happen. This is fact. This is the slippery slope of MAID, and it's exactly the slippery slope we saw in the Truchon decision.
We have heard recommendations from pro-MAID expansion groups and individuals that our children as young as 12 should be eligible for MAID, that we should be able to euthanize our babies born with disabilities anytime prior to their first birthday and that persons with disabilities and those with mental illness as a sole condition who are not at end of life and whose suffering is only due to lack of supports—supports that we as a country could provide but do not—should be eligible for MAID. As a country, Canada has the ability to provide adequate supports to ensure a good life for persons with disabilities and those with mental illness. We can provide adequate funding for and access to comprehensive palliative care for those at the end of life and for their families.
MAID should never be seen as the solution to addressing the absence of those services and those resources, but it is fast becoming that. This is our collective failure as the people of Canada.
Thank you.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you very much, Mr. Belanger.
I'll now turn it over to my co-chair, Senator Martin, for questions.
The Joint Chair Hon. Yonah Martin
Thank you.
Thank you to all the witnesses for your testimony this morning.
For the first questions from the CPC we'll have Madame Vien for three minutes, followed by Mr. Kram for two minutes.
Madame Vien, go ahead.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
Thank you very much, Madam Chair.
I'd like to thank the witnesses for being with us this morning.
Dr. Verhagen, I'd like you to clarify the information you gave us about parental consent, because I'm a little confused: When is parental consent required?
Could you also tell us at what point in the process you would begin considering the minor's opinion when you are dealing with a difference in opinion?
Pediatrician and Head of the Beatrix Children's Hospital, As an Individual
The Dutch health law says children and parents decide together in the age group of 12 to 16. The law also states that if the child and parents disagree on health care matters, doctors will follow the child. This is not an opinion. This is what the health law says.
I must also add that in practice, this hardly ever occurs because in most cases that I know of, especially in end-of-life situations and palliative care, parents and children think alike and decide alike. There have been cases in the past where, for instance, one parent would not allow withdrawal of treatments or intensification of treatments, the child wanted the contrary and a second parent was somewhere in between. Those things sometimes happen, and we would follow the child.
Conservative
Dominique Vien Conservative Bellechasse—Les Etchemins—Lévis, QC
Dr. Verhagen, you told us that seven minors have qualified for access to medical assistance in dying over the past 15 years.
Can you tell us the total number of requests made by minors and how many of them were rejected?
Pediatrician and Head of the Beatrix Children's Hospital, As an Individual
No, I cannot, because those were not registered.