Barriers between providers and families regarding palliative care integration in a multidisciplinary pediatric oncology practice.

Abstract

121 Background: Pediatric oncology patients are known to have high symptom burden. The pediatric oncology population is a natural fit for early integration of palliative care (PC), yet there are often systemic and communication barriers. We assessed oncologists and supportive care providers’ beliefs about PC and described how well prognosis is currently communicated between clinical team members and families. Methods: Primary Children’s Hospital (PCH) is the only pediatric tertiary care hospital serving the Mountain West region. We conducted surveys and semi-structured interviews with all pediatric oncologists at PCH (N = 12) and supportive care providers such as nurses and social workers (N = 13). Surveys were also administered to caregivers of patients (N = 23). Descriptive statistics were generated. Results: Oncologists and and supportive care providers differ even in their beliefs about who should receive PC and when it should begin. 41.7% (N = 5) of attending pediatric oncologists strongly agreed that their patients could benefit from a comprehensive PC consultation and that this should happen around the time of diagnosis. Of the supportive care providers only 15% (N = 2) strongly agree that their patients could benefit from a PC consultation, but 38% strongly agree it should begin at the time of diagnosis. Of the physicians, 33% (N = 4) believe the system currently in place is “adequate,” while only 8% (N = 1) of supportive care providers agree. Physicians report 100% of the time that they “often or always” discuss prognosis with a family, but only 44% (N = 10) of caregivers strongly agree that prognosis was clearly explained. 57% (N = 4) of patients report additional emotional support would have been helpful. Conclusions: Less than half of providers feel their patients could benefit from a PC consultation, despite the majority feeling the current system is inadequate. Also, providers and caregivers perceive discussions about prognosis, a key part of comprehensive PC, in different ways. Our findings demonstrate that a major barrier to the integration of a comprehensive PC program may be a lack of agreement among providers on the team and ineffective communication with families.