Patient work in end-stage heart failure: a prospective longitudinal multiple case study

Abstract

Objective: The most recent WHO definition of palliative care regards living as actively as possible as an important aim. We explored, over a 1-year period, the work this involves for patients with end-stage heart failure. Design: Prospective longitudinal multiple case study using qualitative interview techniques. Participants: Thirty-one respondents from two hospitals who fulfilled one or more of the following criteria: NYHA III or IV, ejection fraction B/25%, at least one hospitalization for heart failure. Main outcomes: Types and content of patient work involved in living with end-stage heart failure. Results: For patients with advanced heart failure, work consisted mainly of four types of tasks, as identified by Glaser and Strauss: ‘managing illness’, ‘everyday work to keep life going’, ‘biographical work’ and ‘arrangement work’. Conclusions: Systematic attention to patient work, for example using these four categories, could improve the quality of care from the patient’s perspective.