Over the last several weeks, after surveying friends and colleagues on the topic of paediatric palliative care, I learned that, by and large, it was unheard of. Despite approximately 50,000 children dying each year in Canada from a wide range of illnesses, including cancer and various neurodegenerative and metabolic diseases, paediatric palliative care is not a health care service that many Canadians are aware of.
For myself, it was not until attending an informative and thought-provoking lecture at the Institute for Life Course and Aging at the University of Toronto delivered by Dr. Adam Rapoport, Medical Director of the Paediatric Advanced Care Team (PACT) at the Hospital for Sick Children, that I learned that such services were in fact being offered right here in Toronto. And not only is paediatric palliative care significantly different from adult palliative care (the version most Canadians have actually heard of), but there is also a need for more of it.
So just what does paediatric palliative care entail? PedPalASCNET, a multidisciplinary group of researchers for accessible, sustainable, and collaborative paediatric palliative care, identifies this type of care as:
“An active and total approach to care provided to children with life-threatening conditions and their families from the time of recognition or diagnoses of disease, throughout the illness, at the time of death and beyond. It is typically provided by an inter-professional team with consideration given to biopsychosocial-spiritual elements to meet desired outcomes.”
As the term ‘palliative’ would suggest, care is focused on comfort rather than cure, although both approaches can at times exist simultaneously. However, despite the important nature of this health care service, a media scan and a look at recent government reports makes it clear that pediatric palliative care is not being discussed by the Canadian public, nor is it apparent on any political agenda — federal, provincial, or otherwise.
At a time when palliative care for the elderly has garnered significant media and popular attention, including notable mentions by both the Ontario government (by way of including end-of-life care services in the mandate letter to the Ministry of Health and Long-term Care) and by Federal Health Minister Rona Ambrose (in stating that Canada needs better palliative care), there has yet to be much substance in terms of government policy to address the issue. This is a concerning fact, and one that needs to change, as children in particular are at risk under the status quo.
Policymakers need to understand that there is no “one size fits all” framework that can be applied in dealing with individuals with life-threatening illnesses. The provision of adult and paediatric palliative care services are significantly different in terms of both the training and resources healthcare providers need to deliver high-quality care.
The challenges of pediatric palliative care are unique. There is a broad range of child illnesses, several of them so rare that there has only ever been a handful of reported cases worldwide. This leads to an uncertainty about the likely outcomes of an illness, which can in turn make it difficult to understand its trajectory — presenting barriers to obtaining further resources for pediatric palliative care units. With children, it is often difficult both for families and for health care providers to know when the appropriate time is to consider palliative care treatment options. Some physicians have got around this by applying the four quadrant model, which classifies those illnesses that children have that may ultimately require palliative care services. Regardless, it has become widely accepted that palliative care consultations should be occurring sooner rather than later, irrespective of the prognosis.
Another challenging aspect of pediatric palliative care is the fact that, when children die, it seems like an unnatural, morally unjust and unfair event. Individuals are generally more likely to accept and understand the death of the elderly than that of a five-year-old child. The death of a child is particularly effecting for both his or her family and the broader community, and paediatric palliative care teams work to address this by including all parties in the bereavement process.
So if thousands of Canadian children die each year, and if the need for adequate pediatric palliative care services — and their benefit — is indeed significant, why is this not a bigger issue? The fact that pediatric palliative care is not currently a topic in the mainstream news or on any political or policy agenda highlights the sensitivity of our society when discussing death, and the difficult decisions that are made in end-of-life care. It is time to reframe this conversation, and to consider the needs of all individuals, irrespective of their age.
Choosing palliative care as a treatment option is not giving up on hope. This common misconception needs to be discarded, and a more honest, national conversation taken up in its place. It is time for policy-makers to join in on and encourage a discussion that accepts the remarkable work done by palliative care practitioners within the health care system, and works toward improving and expanding services provided. And in this process, let us not forget about the children.
Andrea Bracaglia is a 2015 Master of Public Policy Candidate at the School of Public Policy in Governance , University of Toronto. She recently completed a LEAD internship in conjunction with the Faculty of Medicine, and interned at the Princess Margaret Cancer Centre on a health equity project. Andrea has a strong interest in health policy and hospital management, and hopes to continue to explore the field of palliative care policy.