Should assisted dying be extended to minors? Not so fast, some experts warn  

Before moving ahead with expanding assisted dying, Parliament needs to address “failures” in the current regime for Canadians to see ending their life as the only option, says the interim chair of the Canadian Human Rights Commission.

In a statement to Global News, Charlotte-Anne Malischewski says the federal government needs to take a closer look at what has happened since existing medical assistance in dying (MAID) legislation came into force before extending this program to further populations.

“In particular, (Parliament) needs to focus on the many worrying accounts of individuals who have accessed or are considering accessing MAID because Canada is failing to fulfill their fundamental human rights,” Malischewski wrote in a statement to Global News.

“In an era where we recognize the right to die with dignity, we must do more to guarantee the right to live with dignity.”

The interim chair’s concerns come as MAID is poised to become available to those whose sole underlying condition is mental illness, a change that was to take effect next month but has been delayed until March 2024 due to concerns the health-care system might not be prepared for an expanded regime.

It also comes in the wake of a report tabled last week in the House of Commons from a special joint parliamentary committee of MPs and senators charged with reviewing the current assisted dying regime.

The committee recommended that physician-assisted death should be extended to mature minors in one of 23 proposed updates to the MAID program.

The term “mature minor” refers to a common law doctrine, endorsed by the Supreme Court of Canada, that allows children who are sufficiently mature to make their own treatment decisions.

This recommendation has been viewed with deep concern by some experts, who question the speed at which MAID is expanding in Canada after reports have surfaced of some individuals choosing to die because they couldn’t access housing, social or medical supports to live a meaningful or pain-free life.

Malischewski would not comment on the recommendations regarding assisted dying for minors because it is an issue for which she may be called to testify in Parliament, if and when it becomes legislation, she said in her statement.

But she did say the Commission has heard about “too many cases” in which Canadians are choosing to die because they don’t have access to a life with fundamental human rights, including the right to an adequate standard of living, the right to adequate housing as well as rights to health care and accessible services.

“What the Commission has heard is that, in far too many cases, these failures leave people seeing ending their life as the only option. This is unacceptable,” Malischewski said.

“Medical assistance in dying cannot be a default for Canada’s failure to fulfill its human rights obligations. Before Parliament extends MAID any further, it needs to ensure that it is providing meaningful options beyond ending one’s life.”

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In making its recommendation to extend assisted dying to minors, the joint parliamentary committee noted mature minors in Canada are already allowed to make decisions about withholding or ceasing medical treatment, even when such decisions may hasten death.

A number of experts told the committee they strongly believed the capacity for a minor to make an informed health-care decision is not a function of age, nor is the level of suffering they might endure during an illness, a view supported by clinical observations, the committee’s report said.

Members of the committee held 36 meetings, heard from nearly 150 witnesses and reviewed more than 350 briefs on the medically assisted dying program.

The advocacy group Dying with Dignity told the committee in May 2022 it believes it is “unfair” to allow a 70-year-old with terminal cancer the choice of a peaceful death, but deny a 12-year-old “who has been given the same prognosis and demonstrates a clear capacity to make the decision as an adult, the same choice.”

This is especially true when that same 12-year-old has the legal right to accept or refuse medical treatment that may prolong their life, the group stated.

In the end, the committee agreed that many factors can influence a minor’s decision-making capacity, therefore it “believes that eligibility for MAID should not be denied on the basis of age alone.”

However, parliamentarians did include the caveat that access should be restricted to those “whose natural death is reasonably foreseeable.”

Funding should also be provided for researching the views and experiences of minors when it comes to assisted dying, the committee said, adding that those consultations should include minors with terminal illnesses, those with disabilities, minors in the child welfare system and Indigenous minors.

Currently, the Netherlands and Belgium are the only two jurisdictions in the world where assisted death is permitted for minors.

In the Netherlands, MAID is allowed for minors aged 12 and over, and may soon be expanded to include younger children. Dutch children between the ages of 12 and 16 must have parental consent, while for those between 16 and 18, parents must be consulted but do not have a veto.

In Belgium, there is no minimum age as long as the minor has been deemed to have the capacity to make a decision of this nature. Belgian minors must be terminally ill, dying in the short term and experiencing unbearable suffering.

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An expert review of assisted dying conducted by the Council of Canadian Academies that was commissioned by Canada’s Parliament, noted in its 2018 report that because only two jurisdictions allow MAID for minors, and cases remain extremely rare within those countries, little is known for certain about the practice.

“There is minimal information about the 16 documented cases, and none about the families in Belgium and Netherlands whose children have gone through the process,” the 2018 report states.

This expert review also highlighted that although Canadian courts have addressed cases of minors wishing to withhold or withdraw potentially life-saving or life-prolonging treatment, “there have been no cases of minors requesting MAID.”

But that could soon change in Canada, according to some experts.

A 2016 study conducted by the Canadian Paediatric Society (CPS) shows pediatricians have been fielding questions about MAID for minors since the landmark 2015 Supreme Court Carter decision that declared Canada’s prohibition of physician-assisted death a violation of the Charter of Rights and Freedoms.

Thirty-five pediatricians of 1,050 surveyed in 2016 reported having had exploratory discussions with 60 minor patients in the preceding year, and nine reported explicit requests for MAID from a total of 17 minor patients, according to the CPS study’s findings.

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In addition, 118 pediatricians said they’d had exploratory discussions about MAID with parents, on behalf of 419 never-competent children, and another 45 pediatricians reported receiving explicit requests for assisted dying from parents on behalf of 91 children within the previous year.

Over half of these requests pertained to newborns or infants under a year old.

Jocelyn Downie, a professor in the faculties of law and medicine at Dalhousie University and an expert in end-of-life law, says the legal argument to extend assisted dying to mature minors in Canada is unambiguous.

“We can’t discriminate on the basis of age. It doesn’t make any sense,” she said.

Canada already has a robust process for recognizing and determining the decision-making capacity of mature minors to make health-care decisions for themselves, she explained.

For example, a 17-year-old who is on dialysis can choose to stop receiving this treatment without parental consent or even notification, even if that choice could lead to death, she said.

“We have an established system with respect to age of consent for health-care decisions, which is we have no age of consent. We say what matters is: Do you have decision making capacity?” Downie said.

“Why would we treat MAID any differently? Because you can make life and death decisions as a 17-year-old.”

If Canada does not move forward with extending assisted dying for mature minors, it’s only a matter of time before someone mounts a legal challenge, Downie said, adding that she strongly believes they would win.

She thinks Canada has been moving at a “glacial” pace when it comes to MAID expansions, pointing to a number of expert studies and consultations that have been held, both before and since assisted death became legal in Canada in 2016.

But, Kimberley Widger, an associate professor at the University of Toronto and a Canada research chair in pediatric palliative care, raised alarm about the pace of MAID extensions, saying it feels as though Canada has “flipped a switch” since assisted dying became available to adults.

She is concerned that further expansions to MAID are being given priority while other options for terminally ill patients seeking relief from pain and suffering are not being given the same resources, she said.

“It was amazing how much resources were put in place to ensure people had access to MAID, and yet for how many years and how many reports have been done about the need for palliative care services? And we’re still asking for those things,” Widger said.

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“There was no light switch that has gone on in terms of bringing in all the recommendations that have been made for years about palliative care.”

Widger, who was among the 150 witnesses who provided expert testimony to the joint parliamentary committee, says she does not understand why Canada would consider moving forward with assisted dying for children without first offering better end-of-life care for minors.

Specialized pediatric palliative care is a rare commodity in Canada. Only 17 teams exist in the whole country, according to Widger’s research.

While the exact number of children served by these teams is limited by large data gaps, Widger says more expansive health data available in Ontario shows only one in three children who died from a life-threatening condition in that province received care from one of these teams.

Further detail in her research shows children who died of cancer who lived in low-income neigbourhoods and whose homes were further away from specialty hospitals were even less likely to receive palliative care.

“This is a vulnerable population to begin with but are we also limiting access to the most vulnerable of that vulnerable population, namely people living in low-income areas and maybe more rural areas,” Widger said.

That’s why she says more should be done to provide care and support for children suffering intolerably from terminal illnesses before putting in place the resources for assisted dying.

Without addressing the significant gaps in pediatric palliative care before extending MAID to minors, Widger fears some families watching their children dealing with an excruciating illness may simply not know they have other options.

“It may well be that a mature minor and family is like, ‘Well, there’s nothing else. They’ve tried everything they can. So our only option is MAID because we can’t continue with this level of suffering that we’re experiencing.’ And they haven’t even, maybe, had the big toolbox,” she said.

“That is what a pediatric palliative care team offers. But you don’t know what you don’t know.”

While she welcomed recognition in the committee’s findings acknowledging these gaps in palliative care services, she had concerns about a recommendation calling for specialized pediatric palliative care professionals to be involved in the capacity assessment to determine whether a youth can choose MAID.

Currently, these specialists are not involved in the care of children who might benefit from their services, and when they are, they’re often brought in when the child has only weeks left to live, she said.

“If you’re calling them at the time that a mature minor is asking for MAID, it’s too late,” Widger said.

“Palliative care has got to be involved early and we have to have appropriate palliative care services available to every child across Canada, regardless of age… so that people have options.”