By far this has to be the toughest article I’ve researched to date, not only in terms of trying to find resources to provide the information that I feel would be most helpful, but also in terms of the emotional reality of the need for such services. And yet I am (and probably many of you are as well) aware of children who are suffering from a life-threatening condition or illness thanks to sites like CaringBridge and Carepages.com, which offer parents an opportunity to support each other.
The Need for Palliative Care for Children and their Families
According to a 2004 article published in the New England Journal of Medicine, “approximately 50,000 die and 500,000 children cope with life-threatening conditions” in the United States and those numbers are in the millions world wide.
With these numbers, it is clear that these children and their families face unique and stressful medical conditions that require palliative support services.
“Pediatric Palliative Care is an active and total approach to care for children with life-threatening conditions, from the point of diagnosis, through the ups and downs of active treatment, and including end of life care when necessary. Care focuses on comfort, quality of life, maximizing growth and development to the degree the child is able, and support for the child in the context of family-centered care. Pediatric palliative care involves a coordinated, interdisciplinary approach that follows the child and family across settings, and throughout their illness or disability” (National Network for Pediatric Palliative Care).
Pediatric Palliative Care: A Valuable Resource
It is a myth that palliative care is only for the dying. The Royal Children’s Hospital Melbourne (Australia) asserts that “[p]alliative care has often been associated with ‘giving up’ in the minds of parents and health professionals, but this need not be the case. Palliative care is not about ‘doing nothing’ and should be presented as a very active approach to symptom control and family support.”