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Palliative Medicine
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Thoughts of patients with advanced heart failure on dying

D L Willems

Department of General Practice at the Academic Medical Centre/University of Amsterdam, Amsterdam

A Hak

Department of Methodology, Rotterdam School of Management, Erasmus University, Rotterdam

F Visser

Department of Cardiology at the VU University Medical Centre, Amsterdam

G Van der Wal

Department of Social Medicine and the Institute for Research in Extramural Medicine at the VU University Medical Centre, Amsterdam

Objective: To explore, over a one-year period, the ideas and attitudes of patients with end-stage cardiac failure concerning dying. Design: Prospective longitudinal multiple case study using qualitative interview techniques. Participants: Thirty-one patients from two hospitals who fulfilled one or more of the following criteria: NYHA III or IV, ejection fractionB >25%, at least one hospitalization for heart failure. Main outcomes: Statements of patients with advanced heart failure, expressed in semi-structured interviews, concerning the quality of dying and medical decisions at the end of life. Results: Many respondents only thought about death during exacerbations. Mentioned aspects of appropriate dying include: a degree of usefulness, prognostic knowledge, appropriate duration and mental awareness. Few respondents were in favour of euthanasia or suicide, but all wanted life-prolonging treatment to be withheld or withdrawn when appropriate. Conclusions: Our study found some elements of ‘appropriate dying’ that differ from other studies and that are relatively specific for advanced heart failure. The tendency of patients not to think about death raises ethical concerns.

Key Words: advanced heart failure • end-of-life • patient views • quality of dying

Palliative Medicine, Vol. 18, No. 6, 564-572 (2004)
DOI: 10.1191/0269216304pm919oa
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