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

Abstract

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. Prospective longitudinal multiple case study using qualitative interview techniques. Thirty-one respondents from two hospitals who fulfilled one or more of the following criteria: NYHA III or IV, ejection fraction <25%, at least one hospitalization for heart failure. Types and content of patient work involved in living with end-stage heart failure. 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'. Systematic attention to patient work, for example using these four categories, could improve the quality of care from the patient's perspective.