[End-of-life care: experiences and expectations of bereaved relatives]

Abstract

Background and aim: Within end-of-life care concepts, relatives of patients suffering from incurable illness are an important target group. This study aims to explore the experiences of relatives of deceased patients regarding health care delivery within the last days and weeks of life, and to work out implications for patient and relatives oriented improvement strategies.

Patients and methods: We conducted 19 qualitative interviews with bereaved relatives addressing the patient's use of health care services and satisfaction with the services, as well as communication and information. Interviews were transcribed verbatim and analyzed using qualitative content analysis.

Results: Three main categories were developed: (1) present health care delivery, e. g. positive and negative experiences concerning communication and information; (2) expectations and wishes, e. g. better support and coordination concerning discharge from hospital; (3) the relative and the dying patient, e. g. attitudes towards death and dying as well as individual limitations and resources. Overall, from the perspective of the bereaved relatives there are deficits concerning coordination of health care delivery and communication.

Conclusion: Improving coordination of health care in particular with regard to the interfaces of outpatient and inpatient care, advanced care planning and strengthening "talking medicine" may contribute to optimize health care delivery for severely ill and dying patients and their relatives.