Nurses' experience with relatives of patients receiving end-of-life-care in nursing homes and at home – a questionnaire based explorative study

Aim: The aim of this study was to explore nurses´ experiences regarding relatives’ ability to accept imminence of death, and relatives’ ability to reach agreement when deciding on behalf of patients unable to consent. Design: A questionnaire based explorative study Method: An electronically distributed survey to 884 nurses in long-term care in Norway. 399 nurses responded (45 %), of which 197 worked in nursing homes, and 202 in home based care. Results: Nurses in home based care, more often than their colleagues in nursing homes, experienced that relatives had difficulties in accepting that patients were dying. Nurses who felt insecure about whether or not life extension was in consistency with patients´ wishes and nurses who talked most about life prolonging medical treatment in communication with relatives, more often experienced; relatives being reluctant to accept a bad prognosis, and disagreements between relatives in their role as proxy decision-makers for the patient.