Defining the Boundaries of Palliative Care in Pediatric Oncology

Abstract

ContextAlthough palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult. ObjectivesWe sought to describe oncologists' current understanding of PC and how primary PC is provided for children with cancer. MethodsThis mixed-methods study explored pediatric oncology providers' definitions of PC and self-reported PC practices through semistructured audiotaped interviews. Conventional content analysis was applied to interview transcripts. ResultsSeventy-seven participants with diverse training backgrounds (30 attending physicians, 21 nurses, 18 fellows, five nurse practitioners, and two child life specialists) completed an interview. Approximately 75% provided a modern definition of PC (e.g., not limited to end-of-life care); all participants acknowledged primary PC skills as part of their daily clinical activities. However, participants expressed wide variation in the comfort and time spent performing primary PC tasks (i.e., symptom management, addressing mental health and psychosocial needs) and over half reported that patients' PC needs are not adequately met. In addition, some reported confusion about the benefits of PC consultation, despite acknowledging that PC needs to be better integrated into the care of pediatric oncology patients. ConclusionOur findings demonstrate that although most pediatric oncologists accept a modern definition of PC in theory, how to integrate PC into pediatric oncology practice is less understood. Formalized training and standardization of practice surrounding identification of PC needs in patients who may require secondary or tertiary PC services may help to overcome current barriers for PC integration in pediatric oncology.