Pediatric Palliative Care: Current Evidence and Evidence Gaps

Abstract

ospice and palliative medicine (HPM) is an emerging medical subspecialty initially recognized by the American Board of Medical Specialties in 2006. As the Institute of Medicine reported in 2014, health care delivery and the challenges of care at the end of children’s lives have evolved significantly over the past 15 years. The last decade has seen the growth of pediatric palliative care (PPC) programs at children’s hospitals and a transformation of the field. Fifty percent of children’s hospitals nationwide have a PPC program, with a peak in new program development occurring in 2008. New programs are almost immediately impactful, experience high referral volumes, and must quickly expand their workforce. Although HPM has a growing body of literature, the evidence for PPC appears to lag behind the clinical growth. Here we provide a focused and practical summary of evidence in pediatric HPM as a primer for those practicing in other subspecialties. Specifically, we review evidence by focusing on a few of the domains in HPM : (1) communication and psychosocial support; (2) pain and symptom management; (3) end-of-life care; and (4) ways to build a better health care system.We hope to strengthen understanding and partnerships between HPM and non-HPM clinicians and investigators and thereby improve patient care for children with serious illnesses.