Living with terminal illness: patient and family experiences of hospital end-of-life care

Aim. The study explored terminally ill patients' and their families' experiences of hospital end-of-life care. Design. A qualitative approach - interpretive phenomenology - was applied prospectively. Sample and setting. Ten patients and their closest family members were recruited in one Swiss university hospital. Methods. Data collection included repeated observations, conversations with patients, and interviews with family members. Findings. People led unique lives; when a terminal illness intruded and during hospital stays, they continued to live their particular life. The hospital was experienced differently, as prison, heaven, or necessary sojourn. A caring stance of the professionals was crucial to patients' and families' sense of being well cared for. When care providers lacked skills or did not recognize patients and family members as persons, they suffered. In contrast, adequate care interventions improved their quality of life. Conclusions. The experience of being in the hospital cannot be separated from patients' and families' life stories.