Patient, Caregiver, and Taxpayer Knowledge of Palliative Care and Views on a Model of Community-Based Palliative Care

Abstract

ContextPalliative care (PC) model delivered by two large hospices and PC providers. ObjectivesTo understand study participants' knowledge of PC and acceptability of a new community-based PC model. MethodsSemistructured interview with patients and caregivers; focus groups with taxpayers. Descriptive content analysis with an inductive approach. ResultsAcross 10 interviews and four focus groups (n = 4–10 per group), there was varying knowledge of PC. Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC affects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants and not as full-time providers. Focus group participants indicated that the model sounded promising but noted the likely difficulty in enacting it in our current health care system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and suboptimal provider-patient communication persist for some patients getting PC services. ConclusionEducation for patients, caregivers, and community members about the roles and benefits of PC will be needed to successfully expand community-based PC.