From The Specialist 3. Pediatric Palliative Care – Not Exactly What You Thought. Dr. Adam Rapoport.
Perhaps the most frequent comment I get when I tell people what I do is: “that must be so hard.” There’s just no getting away from it – people can’t imagine that caring for children with life-limiting illnesses can be anything but sad and difficult. And while there are obviously times of sorrow, many are surprised to learn that in fact, there is much happiness and joy in the work that I do. After all, pediatric palliative care is much more about living than it is about dying.
The goal of palliative care is to maximize quality of life – to make life as good as possible, however long that life will be. Common perceptions about pediatric palliative care (that it is all about death and dying) largely come from adult experiences. High numbers of dying adults force our constrained system to focus on end-of-life care and as such it is not uncommon for palliative care to get involved just weeks or even days before an adult dies. In contrast, the much smaller numbers of children with a life-limiting illness permits the introduction of palliative care earlier in the disease trajectory, sometimes even at diagnosis.
Pediatric palliative care is holistic care. It seeks to relieve suffering of any nature, whether physical, psychological, emotional or spiritual. This is accomplished by helping children and families identify goals of care – what matters most under the circumstances? A common misconception is that palliative care is only appropriate when curative therapies have been exhausted. But children and families are able to balance many goals at the same time; even while they hope for a cure, they may also wish to minimize pain, spend as much time out of the hospital as possible or to attend a special event (a graduation or a birthday, for example). By integrating palliative care early in the disease course and working together with the primary medical team, we can best help children and families accomplish all of their goals.
Children, by nature, are dependent on others and live within a larger family unit. Not surprisingly, a child’s quality of life can only be at its best when the needs of the entire family are addressed. Pediatric palliative care seeks to help parents, siblings and other family members cope with the changing situation. Brothers and sisters in particular may struggle under the circumstances as families understandably focus their attention on the ill child. Similarly, members of the pediatric palliative care team may work with the child’s extended community – friends, schoolmates, sports team, etc.
Sad moments are not uncommon in pediatric palliative care – eventually, many of my patients die and their death is always a time of sorrow for family, friends and members of the child’s healthcare team. The palliative care team continues to provide ongoing support to bereaved families, helping them work through their grief. Yet, the inevitable moments of sadness that come with the job are overshadowed by the warmth and happiness I feel when families share all of the positive outcomes that palliative care brings into their lives.
For further information, visit the Hospital For Sick Children’s Palliative and Bereavement Care Program’s Website.