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

Tóra Róin*, Birgit Jurlander, Gitte Irene Juhl, Karin B. Dieperink, Per Sjøgren, Heidi Bergenholtz, Ann-Dorthe Zwisler, Geana Paula Kurita, Sille Larsen, Niels Tønder, Lene Vibe Høyer, Camilla Lykke

*Corresponding author for this work

Research output: Contribution to journalJournal articleResearchpeer-review

Abstract

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.

Original languageEnglish
JournalEuropean Journal of Cardiovascular Nursing
ISSN1474-5151
DOIs
Publication statusE-pub ahead of print - 7 Jan 2025

Bibliographical note

© The Author(s) 2025. Published by Oxford University Press on behalf of the European Society of Cardiology. All rights reserved. For commercial re-use, please contact [email protected] for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact [email protected].

Cite this