Barriers and supports for community-based palliative care for patients with heart failure

Abstract

Background: Managing palliative care issues can be challenging for adults who live in the community, especially for those who have advanced heart failure (HF). Little research has been conducted that examines the barriers and supports related to delivery of optimal palliative care in the community, and about the factors that influence use of palliative care services in this population. Purpose: The purpose of this study was to explore the perceptions of community-dwelling adults diagnosed with end-stage HF, their informal caregivers and health care professionals about the barriers and supports for optimal palliative care in the community setting. Methods: This study used a qualitative methodology based on grounded theory to guide data collection, analysis and interpretation. Purposive and theoretical sampling were used to collect data. A total of 30 interviews were conducted and included 7 patients, 7 informal caregivers, 10 nurses, 3 physicians, and 3 pharmacists. Results: The uniqueness and subsequent challenges of patients who required palliative care for end-stage HF were highlighted. Across all participant groups, the uncertainties generated by the undulating HF disease trajectory created significant barriers to accessing and optimizing palliative care provision in the community. Major obstacles existed which precluded a smooth transition to palliative care, including poor communication between patients and their health care providers and among health care providers themselves, uncoordinated care, and reluctance to label patients as palliative. Supports included access to pharmacologic and non-pharmacologic care, presence of informal caregivers, social support networks for patients and informal caregivers and expertise of health care professionals related to HF. Conclusions: Individuals who suffer from advanced HF experience many struggles as they transition to palliative care. Community palliative care provision must be sensitive to, and designed to accommodate the uniqueness of the HF trajectory. This study provides important information that may be useful in designing, implementing, and evaluating supportive networks and multi-disciplinary interventions with the goal of helping older adults with advanced HF manage better while living in the community. In turn, undesirable outcomes such as increased morbidity, caregiver stress, and hospitalizations, can be minimized.