When Is the Right Time? A Qualitative Study of Timing of Specialty Palliative Care in Patients With Brain Tumors

PURPOSE: To understand from patients, care partners (P/CPs), and physicians the ideal timing of specialty palliative care (SPC) involvement. METHODS: Using a framework of phenomenology and care ethics, we analyzed interviews through a thematic analysis approach. Two investigators independently coded transcripts of recorded interviews. P/CPs were recruited from a single hospital clinic from multiple different oncologists. Physicians were recruited via purposeful snowball sampling based on their knowledge and expertise. RESULTS: Thirty-one participants were recruited: 14 (45%) P/CPs and 17 (55%) clinicians. The mean age of P/CP was 49 years, whereas clinicians' mean age was 44 years. Half of P/CPs were female, and a similar portion of clinicians (53%) were female. More than half of patients had gliomas (57%), and all clinicians were physicians who had practiced neuro-oncology for a mean of 12 years. We identified four themes: (1) Participants felt patients would have benefited from earlier SPC, but there were slight differences in timing based on brain tumor type and grade; (2) neuro-oncology patients have unique supportive care needs compared to other cancers; (3) specialty knowledge of neuro-oncology is important to P/CP for advance care planning, prognostication, and anticipatory guidance; and (4) the broadly intensive role played by care partners in neuro-oncology means they have equally heavy supportive needs. CONCLUSION: This is one of the first studies to explore timing of SPC for patients with CNS tumors. P/CPs and clinicians agreed that early, time-based SPC is beneficial for management of high-grade tumors. Increasing knowledge of neuro-oncology among SPC clinicians working with this population is an area for further study.