Taking a stand, ready or not : navigating sensitive end-of-life care conversations in patients with end-stage heart failure

Article

ROIN, Tóra | JURLANDER, Birgit | JUHL, Gitte Irene | DIEPERINK, Karin B. | SJØGREN, Per | BERGENHOLTZ, Heidi | ZWISLER, Ann-Dorthe | KURITA, Geana Paula | LARSEN, Sille | TØNDER, Niels | HØYER, Lene Vibe | LYKKE, Camilla

AIMS: Patients with heart failure (HF) often experience delayed identification of palliative care needs. While communication with HF patients and their caregivers is increasingly stressed, systematic conversations about end-of-life care wishes remain a gap. This study explores a dyad experience of Advance Care Planning (ACP) conversations in an HF outpatient clinic. METHODS AND RESULTS: A qualitative interview study with 15 patients diagnosed with end-stage HF and 14 caregivers. Through qualitative content analysis and investigator triangulation, three subthemes emerged: 'ACP as a harsh reality', 'ACP as a catalyst for crucial conversations', and 'ACP conversations help appreciating life's small moments and adjusting hope'. Despite significant symptom burden, many patients lacked awareness of their end-stage HF prognosis. Following an initial 'reality shock', ACP conversations facilitated open discussions about end-of-life care wishes. Especially spousal caregivers experienced a significant caregiving load, generating complex emotions for both patients and their families. Notably, patients prioritized self-care, daily activities, and social interaction for maintaining quality of life. CONCLUSION: This study highlights a gap between patients with end-stage HF disease status and their comprehension of disease severity. Early integration of ACP may address knowledge gaps, enable informed decision-making, and alleviate caregiver burden. The study also emphasizes the patient-and family-centred care to support self-care, daily life activities, and social connections for improved quality of life throughout the disease trajectory. REGISTRATION: ClinicalTrials.gov: NCT05269875.

http://dx.doi.org/10.1093/eurjcn/zvae170

Voir la revue «European journal of cardiovascular nursing»

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