CONTEXT: Hospital care and communication tend to be focused on the individual patient, and decision making is typically based on the principle of individual autonomy. It can be questioned whether this approach is adequate when a patient is terminally ill.
OBJECTIVES: Our aim was to explore the involvement and experiences of relatives in the hospital during the patient's last phase of life.
METHODS: This study was embedded in a retrospective questionnaire study on the quality of dying of a consecutive sample of patients who died in a general university hospital in The Netherlands. We performed a secondary qualitative analysis of relatives' comments and answers to open questions. Relatives of 951 deceased adult patients were asked to complete a questionnaire; 451 questionnaires were returned and analyzed for this study.
RESULTS: Relatives expressed a need for 1) comprehensible, timely, and sensitive information and communication, 2) involvement in decision making, 3) acknowledgment of their position, 4) being able to trust health care staff, and 5) rest and privacy. When relatives felt that their role had sufficiently been acknowledged by health care professionals (HCPs), their experiences were more positive.
CONCLUSION: Relatives emphasized their relation with the patient and their involvement in care of the patient dying in the hospital. An approach of HCPs to care based on the concept of individual autonomy seems inadequate. The role of relatives might be better addressed by the concept of relational autonomy, which provides HCPs with opportunities to create a relationship with relatives in care that optimally addresses the needs of patients.