Catholics need better understanding of pediatric palliative care

The health program director for the non-partisan think tank Cardus wants Canadian Catholics to help champion better pediatric palliative care practices.

Rebecca Vachon said that “saturating each parish” with the Canadian Conference of Catholic Bishops (CCCB)’s Horizons of Hope teachings could organically encourage congregants to become effective standard-bearers for pediatric palliative care. The toolkit approaches palliative care through the lens of moral and pastoral theology.

“I think that understanding better palliative care will help (people) understand the options for better pediatric palliative care,” said Vachon.

Horizons of Hope also advocates for the Compassionate Community model of care. Vachon said help can come in the form of kindnesses as simple as providing meals to families or offering to take siblings on an outing.

The February 2023 report released by the parliamentary Special Joint Committee on Medical Assistance in Dying (MAiD) sparked the Ottawa-based researcher’s interest in comprehensively exploring the quality of PPC. One of the contentious recommendations included in the document was for lawmakers to “amend the eligibility criteria for MAiD” to include “minors deemed to have the requisite decision-making capacity upon assessment,” but with the qualification that it is restricted to youth “whose natural death is reasonably foreseeable.”

Vachon said: “It was important to ask: What is the state of care that we provide to children with life-threatening and life-limiting conditions? Is the care that is available adequate, or do we need to do more to ensure no child faces this situation of intolerable suffering where they might request, or their parents might think they need to request, euthanasia or assisted suicide?”

Recently, Cardus published Vachon’s “The State of Pediatric Palliative Care in Canada.” The paper highlights the “inexcusably large gaps in availability” and clears up common public misunderstandings about pediatric palliative care. She said a common incorrect public notion is that children’s palliative care is only for the last days or weeks of life.

“It should start with the diagnosis of a life-limiting or life-threatening illness or condition,” said Vachon, when communication, symptom management and goals of care are established right at the beginning.

“People sometimes associate palliative care with giving up, that we’re not trying anything else or trying to get better — death is inevitable,” Vachon added. “I think especially when we are talking about a pediatric population … that’s really distressing. We don’t want to give up on a young person’s life when they have so much ahead of them.”

Citing the Canadian Network of Palliative Care for Children, Vachon wrote that there are “PPC programs within 13 urban hospitals and eight urban pediatric hospices” nationwide,” one in Atlantic Canada, three in Ontario, two each in B.C. and Quebec and Alberta has one.

Since these specialist programs are centralized in urban centres, Vachon wrote, “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.”

Despite the many challenges affecting the pediatric palliative care landscape, Vachon did mention some bright spots. One positive step was the Royal College of Physicians and Surgeons establishing a subspecialty in palliative medicine with both adult and pediatric academic streams. This development paved the way for the introduction of pediatric palliative medicine programs at the University of Toronto, the University of Ottawa,and the University of British Columbia.

Visit https://www.cardus.ca/research-library/ to read Vachon’s full report.