Children Could benefit from Hospice Palliative Care Too
“A comfort blanket over the whole family.”, “We savoured every moment.”, “No area of medicine in which you can make a bigger difference”.
Often times, we hear those seemingly unrelated phrases which represent different experiences of one thing – hospice palliative care. They are far from the frightening sense of doom that those words often conjure up. A lot of parents think it’s the end when they hear the word “hospice or “palliative care’. In fact, hospice palliative care is a lot about LIVING, especially for children; some children who receive hospice palliative care live into adulthood.
Pediatric hospice palliative care is an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond. It aims to provide comprehensive care for children and their families through the living, dying and grieving processes. It affirms life and regards dying as a process that is a profoundly personal experience for the child and family.
Many of us associate hospice palliative care with seniors and adults, but children with life-threatening illnesses need that comfort as well. While the number of children requiring palliative care is small relative to adults, the impact of a child’s serious illness and death is extensive. It affects the family as well as the entire community. The illnesses that affect children are quite distinct. Palliative care for children comprehensively addresses the body, mind and spirit, and requires an inter-disciplinary approach; it is also inclusive of parents and siblings.
According to recent statistics, the number of children who received specialized pediatric palliative care in Canada more than quadrupled between 2002 and 2012, and 51% of the children who died in 2012 received these services only for the last 30 days of their lives (Widger et al., 2016). No one wants to see a child in pain, and when a child is facing a serious, life-threatening illness, it is especially difficult for the parents and family. Whether dealing with side effects of the illness or treatments, parents and caregivers have so much to learn and do for their child.
Barriers to receiving pediatric hospice palliative care include uncertain prognosis (55%), family not ready to acknowledge incurable condition (51%), language barriers (47%), and time constraints (47%) (Davies, Sehring et al., 2008). Pediatric hospice palliative care is based on the same principles as adult hospice palliative care but also recognizes the unique needs of families faced with a child’s illness and death.
Interdisciplinary care across settings can be extremely beneficial to the child and the family. The pediatric palliative care team generally consists of many team members – physicians, nurses, personal support workers, clinical psychologists, social workers, dieticians, physical therapists, pharmacologists, spiritual leaders and caregivers. The goal is to relieve the child’s pain and discomfort, control symptoms and help the child and family maintain the highest possible quality of life.
In an effort to highlight the role of the pediatric hospice palliative care team and advocate for the importance of this type of care for children and their families, the Canadian Hospice Palliative Care Association (CHPCA) launched a national campaign this fall on October 13th. The campaign aims to raise awareness about hospice palliative care by debunking some of the popular myths about pediatric hospice palliative care. The campaign also advocates for improving the quality of living and dying for infants, children and youth with life-threatening conditions and their families.
The CHPCA has created a downloadable poster and FAQ sheet to answer some of the questions about pediatric hospice palliative care. Social media users are invited to engage with CHPCA’s Facebook (CanadianHospicePalliativeCare) and Twitter (@CanadianHPCAssn) and to use the hashtag #HPCForChildren to draw the attention to the importance of quality hospice palliative care for all ages, including children and their families. For more information about the campaign, please visit www.chpca.ca/hpcforchildren
Aia Raafat, MA, Communications Officer, Canadian Hospice Palliative Care Association (CHPCA)