Understanding heart failure patients' beliefs and social representations of palliative care and advance directives

Currently, only a few heart failure (HF) patients receive palliative care (PC). This is partly because the point of view of HF patients on PC remains insufficiently understood. Understanding how these patients perceive PC may help identify the obstacles at play and improve PC provision. Therefore, the aim of this study was to explore representations and beliefs associated with PC in HF patients.

We performed a qualitative study with chronic HF patients in a French university hospital. Participants were eligible if they met the following criteria: (i) age ≥18 years; (ii) confirmed diagnosis of HF with a New York Heart Association (NYHA) functional classification of Stage II, III, or IV; (iii) active follow-up for HF at the hospital. We conducted in-depth, face-to-face interviews with participants. The interviews were audio-recorded, anonymized, and transcribed verbatim. Data were analysed using a thematic approach. Participants reported a misconstrued understanding of PC and often associated it with imminent death. Most had not anticipated end-of-life issues, and some did not feel concerned. Many were unaware of advance directives (AD) or did not have written AD. Personal experiences with end-of-life accompaniment appeared to be associated with a more positive view of PC and a greater willingness to establish AD.

The results of our study highlight the need to inform patients about the mission and scope of PC. Developing assessment and communication tools for healthcare workers may help improve early integration of PC.