"That Don't Work for Me" Patients' and Family Members' Perspectives on Palliative Care and Hospice in Late-Stage Heart Failure

Experts in both heart failure and palliative care recommend collaboration between the two disciplines as a mechanism to improve late-stage heart failure care. However, referral rates of heart failure patients to palliative care services remain low. The purpose of this study was to describe the perspectives of heart failure patients and their family members regarding the barriers to palliative care in late-stage heart failure care. We used qualitative content analysis to identify themes from 40 semistructured interviews with 24 hospitalized late-stage heart failure patients and 16 designated family members. Results indicated that participants often refused or deferred palliative care services if they viewed hospice and palliative care as synonymous. They perceived that a set of hospice “rules” existed and that they were “deal breakers” for heart failure patients as they impeded the goals of aggressively managing troubling symptoms and/or providing comfort at end of life. The findings from this study underscore the need to examine the current hospice guidelines and for clinicians to view palliative care as a philosophy of care that allows for the unpredictable trajectory of heart failure.