Better palliative care essential as Canada considers medically assisted death for youth, pediatricians say

The Canadian Paediatric Society is urging improved palliative care for children and youth as a key part of preparing for the possibility of legalizing medical assistance in dyingfor certainpatients under age 18.

"Medical assistance in dyingis something that has been legislated [for adults] and stated [as] needing to be accessible ... but there isn't the same 'oomph'for saying that all Canadians need good access to palliative care," said Dr. Dawn Davies, chair of the society's bioethics committee and a pediatric palliative care physician in Edmonton, in an interview with CBC News.

"Where the issue of medical assistance in dying is ever raised by a child, you know, we would advocate that that should automatically be a referral for pediatric palliative care."

When Bill C-14, the law governing medically assisted dying for adults, was passed in June 2016, it included a requirement that the ministers of justice and health initiate an independent review on whether "mature minors" youth under age 18 but deemed capable of giving consent should be eligible for medically assisted death. That review is expected to be presented to Parliament by December 2018.

Davies, who is chairing the working group on mature minors as part of that review, is the leadauthor of a report released by the Canadian Paediatric Society on Thursday. The reportmade the palliative care recommendation and also summarized the results of surveys asking pediatricians about their views on making assisted deathavailable to terminally ill young patients, and whether they had received any inquiries or requests about it.

Much like broader Canadian society, pediatricians are divided on the issue, Davies said.

17 minors asked for assisted death

Almost half the respondents surveyed (46 per cent) said they were in favour of extending assisted deathto mature minors "experiencing progressive or terminal illness or intractable pain."

But fewer pediatricians (29 per cent) believed medically assisted death should be available to children or youth with "an intolerable disability." One-third opposed assisted deathfor patients under 18 years of age under any circumstances.

Thirty-five pediatricians said they had "exploratory discussions" with a total of 60 patients under the age of 18 in the preceding year. Nine pediatricians received "explicit requests" for assisted death from a total of 17 minors.

• One year after Canada's medically assisted dying law, patients face uneven access

The results of the pediatric society's surveysshow that access to medically assisted dying for mature minors is a genuineissue in Canada, said Shanaaz Gokool, CEO of the advocacy group Dying with Dignity Canada.

"For us, this is fundamentally an issue about discrimination," said Gokool. "How can we look away from the 16-year old that has enduring, intolerable suffering that can make other health-care decisions? How can we look away from them in the face of that suffering and deny them their right to an assisted death?"

If the Canadian government decides not to extend the assisted death option to mature minors, Gokool said,affectedteens and their families will likely take legal action.

"We don't want to have a situation [where we] rely on a 15-year-old with terminal illness and their family, already grieving what they know will be the inevitable outcome of their child having an early death because of their medical condition, having to go to court," she said.

Include bereaved parents in consultations

Canadian Physicians for Life, an organization of physicians who oppose both abortion and assisted death, argues that good palliative care makes medically assisted death unnecessary for anyone,and is vehemently opposed to making it an option for people under age 18.

"What's really happening is that children are being unprotected whereas they were protected before from euthanasia," said the group's president, Will Johnston, a Vancouver family doctor.

But good palliative care, although essential, won't"erase requests for medical assistance in dying," Davies said.

"I think a lot of it has to do with control over one's life and one's destiny no matter how old you are," she said. "That's a very personal sort of thing."

In addition to recommending better palliative care, the pediatric society's report emphasized the need to consult the people who would be personally affected if medically assisted dying were made available to mature minors, including youth with severe disabilities or terminal illness, parents of children who are critically sick or have severe disabilities, and bereaved parents who have gone through the death of a child due to severe disability or terminal illness.

Bereaved parents can offer valuable insight into how the availability ofassisted death would have affected their child's experience, Daviessaid.

Requests from parents of critically ill children

In addition to the "mature minors" question,the surveys alsofound that parents are asking pediatricians about assisted death on behalf of their critically ill children.

Out of the 1,050 pediatricians who responded, 118 said they had exploratory discussions about assisted death with the parents of sick children, involving 419 kids in all.

Forty-five respondents said they had received explicit requests for assisted death from parents, involving a total of 91 children. More than half of the requests involved a child under a year old.

There needs to be "a recognition that parents are making this request not as a self-serving thing," Davies told The Canadian Press. "[Those]children have illnesses where there is really profound suffering."

The survey about inquiries regarding assisted death for minors was sent to about 2,600 pediatricians and about 40 per cent responded, the Canadian PaediatricSociety said.

The survey measuring physicians' attitudes about assisted deathwas sent to almost 2,000 pediatricians and had a 29 per cent response rate.