“I'd Have to Basically Be on My Deathbed”: Heart Failure Patients' Perceptions of and Preferences for Palliative Care

Abstract

Objectives:

To identify patient perceptions of how and when palliative care (PC) could complement usual heart failure (HF) management.

Background:

Despite guidelines calling for the integration of PC into the management of HF, PC services remain underutilized by this population. Patient preferences regarding delivery of and triggers for PC are unknown.

Setting/subjects:

Individuals with New York Heart Association Class II–IV disease were recruited from inpatient and outpatient settings at an academic quaternary care hospital.

Measurements:

Participants completed semistructured interviews discussing perceptions, knowledge, and preferences regarding PC. They also addressed barriers and facilitators to PC delivery. Two investigators independently analyzed data using template analysis.

Results:

We interviewed 27 adults with HF (mean age 63, 85% white, 63% male, 30% Class II, 48% Class III, and 22% Class IV). Participants frequently conflated PC with hospice; once corrected, they expressed variable preferences for primary versus specialist services. Proponents of primary PC cited continuity in care, HF-specific expertise, convenience, and cost, whereas advocates for specialist care highlighted expertise in symptom management and caregiver support, reduced time constraints, and a comprehensive approach to care. Triggers for specialist PC focused on late-stage manifestations of disease such as loss of independence and absence of disease-directed therapies.

Conclusions:

Patients with HF demonstrated variable conceptions of PC and its relevance to their disease management. Although preferences for delivery model were based on a variety of logistical and relational factors, triggers for initiation remained focused on late-stage disease, suggesting that patients with HF may misconceive PC is an option of last resort.