Family experiences of hospital end-of-life care in Switzerland: An interpretive phenomenological study

Abstract

Experiences of family members of terminally ill patients with hospital end-of-life care were explored. The study is part of a larger study that investigated patients' and families' experiences; this study describes family members' unique experiences. A qualitative method, interpretive phenomenology, was used. Ten closest family members of patients were recruited in one Swiss tertiary care hospital. Data were mainly collected through interviews with family members. Family members suffered greatly when they witnessed patients' suffering. They experienced different approaches by professionals: non-recognition; a rather passive but welcoming attitude; active care for the family. The patient's wellbeing had priority for families; they cared for patients by providing company and being advocates or becoming co-caregivers. Family members experienced consequences of accompanying a terminally ill patient: they felt exhausted and their everyday taken-for-granted world was changed. Caring for the patient had become the only priority. Nurses can best improve families' experiences of hospital end-of-life care when they are aware of families' priorities and take excellent care of the patient first, but, in addition, recognize family members, approach them actively and integrate them as co-caregivers as much as wished by patient and family member.