Palliative care in children with cancer: which child and when?

Abstract

At a time of increasing interest in palliative care in pediatrics, pediatric oncology programs may be failing to deliver adequate palliation to children with cancer. In a recent study, parents of children who died on a pediatric oncology service reported that despite treatment at the end of life, their children's suffering was not adequately relieved and that parents were more likely than caregivers to recognize their children's suffering. Why do pediatric oncologists fail? First, death in children from cancer is a rare event. Second, few prospective trials in the field of pediatric palliative care describe and quantify symptoms during cure-directed care or at the end of life. This leads to a lack of evidence-based practice and forces the clinician to use personal experience and trial-by-error medical care. Third, pediatric oncologists and those charged with developing pediatric palliative care programs must deal with the different physiologic and developmental stages encountered while caring for infants, children, and adolescents. Fourth, education is needed for pediatric oncology caregivers in many areas of palliative care. Finally, reimbursement issues surround the palliative care field and are a major hindrance in developing effective integrated palliative care teams. These factors have also made it difficult to perform palliative care research in children. When discussing palliative care in children with cancer, where few die but many suffer, a paradigm shift must occur that does not equate palliative care with end-of-life care. A model on how we might make the transition from symptom control that we should offer to every patient to end-of-life care is discussed.