Patients' and Caregivers' Perspectives on the Role of Ambulatory Specialty Palliative Care for People With Heart Failure

Abstract

Context

Palliative care is a component of high-quality care for people with heart failure (HF). However, how best to deliver specialist palliative care (SPC) within ambulatory settings is unknown. Such information could help healthcare systems expand access to these services.

Objectives

We aimed to understand the preferred components and characteristics of ambulatory SPC delivery for people with HF and their non-medical family caregivers, as well as to identify barriers to its utilization.

Methods

We conducted a qualitative descriptive study employing content analysis among people with HF and caregivers. We enrolled 20 participants with current use of ambulatory SPC from 3 Department of Veterans Affairs (VA) medical centers.

Results

The sample (N = 20; patients = 16, caregivers = 4) mean age was 64.3 years (standard deviation = 16.5 years), 80% were male, 85% were White, and 10% were Black. Participants valued three key components of ambulatory SPC: 1) providing comprehensive education about HF; 2) care coordination of medical and social services, and 3) serious illness conversations including discussions of goals of care, the selection of surrogate decision-makers, and the completion of advance directives and related documentation. For participants, important characteristics of ambulatory SPC delivery included 1) collaboration and communication among SPC and cardiology clinicians, 2) the accessibility and availability of the SPC team, and 3) flexibility in visit logistics. Barriers to engagement were conflating SPC with hospice, and logistical concerns with appointment delivering and scheduling.

Conclusion

People with HF and their caregivers prefer and value specific components and characteristics of ambulatory SPC. Implementation of ambulatory SPC should be educational, collaborative, and incorporate logistical preferences.