Szymczak JE, Schall T, Hill, DL, Walter JK, Parikh S, DiDomenico C, Feudtner C. Pediatric Oncology Providers' Perceptions of a Palliative Care Service: The Influence of Emotional Esteem and Emotional Labor. J Pain Symptom Manage. 2018;55:1260-1268`. DOI: 10.1016/j.jpainsymman.2018.01.019.
Pediatric palliative care teams are often asked to support children with cancer quite late in their illnesses. While earlier involvement might reduce suffering, children's oncology teams may have beliefs about palliative care teams that prevent earlier referral. In this interview-based study at a major children's hospital, members of the oncology team had many positive perspectives about individual palliative care providers, especially their interpersonal and emotional skills. However, the oncology team also assumed that families were not ready for palliative discussions earlier in cancer care, and that sometimes oncologists were not ready, either.
Among 42 pediatric oncology providers invited to participate, 16 provided interviews (10 physicians, 1 nurse practitioner, 2 social workers, 2 psychologists, 1 child life specialist) that lasted 28-84 minutes. Five major themes were: benefits of palliative care involvement, history of palliative care at the hospital, non-beneficial palliative care involvement, reasons to involve palliative care, and timing of involving palliative care. Oncology providers often described members of the palliative care team as having "beautiful" communication with families, and as "special" and "unique" professionals. They also were grateful for how palliative care clinicians helped manage the time-consuming and emotionally taxing work of caring for very sick patients and their families. However, the perception that families were not ready to discuss palliative options, or that families hear "palliative" as "death", were principal concerns that counterbalanced positive views. In the interviews, it became clear that consulting palliative care - in a hospital with a separate palliative care service - is emotionally difficult in ways that consulting other subspecialists is not, especially when the relationship with the child's family is strained. The perspectives of oncology clinicians who were interviewed in this study might differ from those who were invited but did not participate.