Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis

Abstract

Pediatric palliative care, with its emphasis on symptom management and quality of life, is an important aspect of care of children with life-threatening illnesses. We review recent publications with implications for care of these children. Invasive and life-sustaining measures continue to be part of care for many children with life-threatening illnesses, even at the end of life. While these measures may seem reasonable when recovery is possible, they may not fit with a family's preferences for end-of-life care. One possible cause of the prevalence of invasive measures in children at the end of life is that complex illness trajectories in children make it difficult to predict the timing of death. Inadequate communication by clinicians can also lead to poor preparation for the end-of-life period. Early integration of palliative care allows for improved symptom management, parental adjustment, and preparation for the end-of-life care period. Families who have the opportunity to prepare for the end-of-life period, including learning what to expect, are more likely to feel that their care has been of high quality. Bereaved parents also recognize the value of talking about death with their children. Early integration of palliative care can allow children and families to make decisions about care that fit with their values, and should become a standard of care for all children with life-threatening illnesses.