Thoughts of patients with advanced heart failure on dying

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 Few respondents were in favour of euthanasia or suicide, but all wanted life-prolonging treatment to be withheld or withdrawn when appropriate.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.