Background: More than 5 million people in the USA suffer from heart failure (HF). Palliative care (PC) is both a clinical subspecialty and overall approach to care that focuses on promoting seriously ill patients and their family’s quality of life. PC takes several forms, including consultation by a PC specialist, or attention to palliative domains by a non-PC specialist (aka “primary” PC). Despite guidelines calling for the integration of PC in HF, specialty PC remains underutilized. Patient preferences regarding primary vs specialty PC are unknown.
Objective: To identify patient knowledge and perceptions regarding how primary and specialty PC could complement usual HF management, as well as barriers preventing PC utilization.
Methods: We recruited individuals with NYHA class II-IV HF from general medicine wards and an outpatient advanced HF clinic, both at an academic quaternary care hospital. We conducted semi-structured interviews addressing: (1) patient-perceived physical, emotional, social, and decision-making needs; (2) perception, knowledge, and preferences regarding PC; (3) barriers and facilitators to PC. To understand patient preferences regarding primary vs specialty PC, in the interview guide, we conceptualized PC into 5 domains: physical, emotional, spiritual and social aspects of care, and advance care planning. For each domain, participants discussed unmet needs, and preferences about whether the needs would be best met by their existing cardiology team or a PC specialist. Two investigators independently analyzed data using template analysis, an inductive/deductive qualitative technique.
Results: We interviewed 28 patients; 82% were white, 61% were >60 years, and 64% were male. 43% of participants had ejection fractions <30%, and 64% were of NYHA classes III or IV. Symptom burden was high and a source of dissatisfaction; yet, few believed that their disease management was suboptimal, often citing a sense of resignation that symptoms are inevitable in HF. We heard mixed and often incorrect understandings of PC (and its distinction from hospice). Once misperceptions of PC were corrected, respondents expressed variable preferences for specialty vs. primary PC. Proponents of primary PC cited trust and rapport in their existing clinicians, HF-specific expertise, convenience, and cost. Alternatively, participants preferring specialty PC involvement cited expertise in symptom management, addressing caregiver concerns, reduced time constraints, and a comprehensive non-HF-exclusive approach to care.
Conclusion: We frequently identified limited and often incorrect understanding of PC. Though once corrected, patients articulated variable preferences for primary vs. specialty PC integration into their existing HF care. Research is needed to identify means of increasing primary and specialty PC delivery in HF in a manner that reflects patient preferences.