Allowing Relationships to Unfold: Consult Reason and Topics Discussed in Initial and Subsequent Palliative Care Visits Among Children Who Died From Relapsed/Refractory Cancer.

Abstract

Background: Children with relapsed/refractory cancer have a myriad of palliative care needs. While pediatric oncology clinicians meet many of these needs, studies suggest that these children often have distressing symptoms and that families feel unprepared for their child's end-of-life (EOL). Oncology clinicians cite barriers to pediatric palliative care (PPC) consultation, including concerns that PPC teams will upset families with EOL discussions. This study evaluated topics addressed by PPC teams over the course of their relationship with children who died from cancer. Methods: Retrospective chart review of children who were diagnosed with relapsed/refractory cancer, received PPC consultation at an academic children's hospital, and died between January 2008 and January 2017. Information was extracted regarding the child's treatment, EOL care, and the content of PPC consultation over the course of the team's relationship with the child/family. Results: Fifty-six children were included in the analysis. The most frequent reasons for the initial consult were pain (n = 31, 55%) and non-pain symptom management (n = 18, 32%). At the initial consult, the PPC team most often discussed symptom management and psychosocial support. Prognosis was not discussed in any initial consult. Over subsequent visits, the PPC team expanded their scope of discussion to include goals of care, advance care planning, and hospice. Discussion: Concerns from oncology clinicians that PPC teams will extend beyond the reasons for initial consult into prognostic/EOL discussions at the first visit may be unfounded. Greater familiarity with PPC team practices may facilitate more timely consultation of PPC and its complementary set of services.