This thesis focuses on the quality of dying of patients in the hospital, as experienced by bereaved relatives, physicians and nurses. The thesis includes a validation study of an instrument to assess knowledge and opinions of nurses regarding palliative care, a quantitative and a qualitative study on the experiences of relatives regarding the quality of dying and quality of care in the dying phase; a comparison of the experiences of relatives, physicians and nurses; a study on recognition of the dying phase in relation to medical care; and two studies of the effects of an intervention with palliative care nurse champions on the quality of hospital end-of-life care.
Relatives rated the quality of dying (QOD) on average at 6.3 (range 0-10). A majority of patients and relatives were not sufficiently prepared on imminent death and relatives experienced many problems. QOD was found to be a multidimensional construct, strongly affected by medical care and staff attentiveness. The role of relatives in the care of dying patients was not adequately addressed by health care professionals, which might be improved by collaboration of professionals and relatives. Furthermore, experiences of relatives, physicians and nurses differed significantly regarding the dying phase of the same patients. Nurse champions affected nursing end-of-life care slightly. For example, at intervention wards nurses more often discussed impending death with patients and had improved insight into psychological symptom burden. No improvements were found in relative’s experiences, which was thoroughly discussed.
This thesis contributes to the scientific debate, e.g. regarding experimental research in end-of-life care, and the concepts of quality of life at the very end of life and the quality of dying. Furthermore, this thesis provides professionals with concrete opportunities for improvements in clinical practice, such as assessment and improvement of knowledge and opinions of nurses, demonstration of staff attentiveness, and collaboration with relatives.