‘High Numbers’ of Children Not Receiving Timely Palliative Care, Report Finds

‘High Numbers’ of Children Not Receiving Timely Palliative Care, Report Finds
A toddler looks out the window from a children's hospital in an undated file photo. (Getty Images)
Jennifer Cowan

Many Canadian children in need of palliative care are not receiving it until their final weeks or days of life—and that’s if they receive it at all, according to a newly released report.

There are “high numbers” of children who would benefit from paediatric palliative care (PPC) upon diagnosis of a serious illness or condition, according to a new report from the think tank Cardus. Fixing access issues to such services is especially important because children in Canada could become legally eligible for assisted suicide, Cardus health program director and report author Rebecca Vachon said.

“The rapid adoption of euthanasia and assisted suicide in Canada… makes the issues of accessible and quality pediatric palliative care more critical, as the public conversation has begun to consider expansion of MAID for ‘mature minors,’ that is, children deemed capable of consent,” Ms. Vachon wrote in the report. “Given the problems in the existing provision of PPC noted in this report, Canadians must ensure that children with serious illnesses or conditions do not feel that MAID is their only option.”

The federal Special Joint Committee on Medical Assistance in Dying (AMAD) last year recommended amendments to MAID eligibility to allow assisted suicide for “minors deemed to have the requisite decision-making capacity upon assessment.” The only limitation is that it be restricted to such children “whose natural death is reasonably foreseeable.”

Leading PPC expert Kim Widger has previously testified before the committee on the matter to bring attention to the lack of palliative care options for those under the age of 19.

“My greatest fear would be that a 16- or 17-year-old who does not have access to this type of care would be left feeling that MAID is his or her only option,” Ms. Widger, an RN and PhD told the committee in November 2022.

Ms. Widger said although she hopes minors would not request MAID if it becomes legally available to them, “the number of adults who have taken advantage of MAID is much higher than what we thought it might be when Canada started down this path—so who can say?”

Quality of Care

Unlike adults who typically have the option to receive palliative care at home, most children are forced to spend their last days in hospital, the report said. Many young patients are relegated to acute-care settings, such as emergency departments and paediatric intensive-care units.

“This may result in the receipt of high-intensity interventions in these settings at the end of life, which may not adequately support a focus on comfort care or quality of life,” Ms. Vachon wrote.

The Canadian Network of Palliative Care for Children identified just 13 PPC programs in urban hospitals with only one in all of Atlantic Canada and none in the territories as of November 2023.

There are also eight urban hospices for children. Three are in Ontario, two each in British Columbia and Quebec, and one in Alberta with none in Saskatchewan, Manitoba, the territories, or Atlantic Canada.

While the report found an overall deficit in palliative care for children in general, there are fewer options available to families living in rural and indigenous communities.

“Those who live in rural or remote communities may have to travel, which creates a separation from the community and can result in additional challenges and distress for families,” Ms. Vachon wrote.

She said this issue is felt most keenly in indigenous communities where “death is not meant to be a medical event but a moment of community.”

“This separation from other family members, such as siblings, and from their community occurs at a time when they most need community support,” she said.

“Access to PPC for Indigenous children is further complicated by ‘jurisdictional ambiguities,’ in which conflict exists between different governments over which is responsible for providing the services—and, importantly, which is responsible for the costs associated with them.”

The report noted that the absence of national palliative care standards makes it difficult to assess the quality of paediatric palliative services.

A 2012 study referenced in the report showed a significant delay between receipt of a life-threatening diagnosis and referral of palliative services. Fifty-one percent of the children participating in the study received specialist PPC for less than 30 days while 25 percent received PPC for less than seven days.

Only one quarter of the children who died in intensive-care units were contacted by a PPC team within their last week of life, despite the fact that most of the children had chronic illnesses or conditions present from birth, the study found.

Ms. Vachon said the lack of consistent, quality palliative services for children combined with the real possibility of MAID being offered to “mature minors” should make a revamp of the system a priority.

“It is incumbent upon medical practitioners, policy makers, and legislators to work to eliminate the current patchwork of PPC services,” she said.

She added the availability and quality of PPC within Canada must be expanded, “so that every infant, child, youth, and teen, and their families, are enveloped by a holistic model of care throughout their medical journey, from diagnosis to end of life.”