What does 'palliative care' mean? Diverse definitions from cancer care providers.

Abstract

40 Background: Existing literature on the epistemology of palliative care has mostly centered on patient/family perspectives. Understanding how multi-disciplinary healthcare providers themselves define palliative care is a critical step towards addressing barriers and harnessing facilitators that affect optimal delivery. Methods: Semi-structured key informant interviews (N = 19) were conducted with members of healthcare provider teams as part of a qualitative study on goals of care for cancer patients enrolled in clinical trials. Purposive sampling included diverse roles: attending physicians/principal investigators, oncology fellows, physician assistants, research and clinical nurses, patient care coordinators, palliative care physicians, social workers, chaplains, and pharmacists. One probe asked participants, “What does palliative care mean to you in your work?” Responses were transcribed and independently coded by two raters using interview-derived deductive and emergent inductive codes. Themes were then identified and analyzed using NVivo. Results: Informants included different elements in their definitions: attributes of palliative care (“Palliative care is helpful”); structure (“We have a pain and palliative team”); patient outcomes “(comfort”), and relation to other services (“adjunct to necessary medical care”). Additional themes also included (1) the charge of palliative care to alleviate suffering; (2) the recognition that palliative care should be holistic; (3) the centrality of symptom management, in particular pain; (4) the conflation of end-of-life, hospice, and palliative care; (5) tensions between palliative and curative care. Provider role and specific team membership appear to influence perspectives on definitions of palliative care. Conclusions: Providers share a wide range of perspectives on the operationalization of palliative care in their work. In addition to soliciting input from patients and family members, the viewpoints of a diverse set of providers should be ascertained often to inform models of care, alleviate tensions between palliative and curative care provider teams, and increase optimal usage of palliative care.