Medical Research: What are the main findings of the study?
Response: We investigated the experiences of 249 bereaved relatives (response 51%) of patients who had died in the hospital, after a hospitalization of at least six hours. The main outcome measure was their global score of the quality of dying (QOD) on a 0-10 scale, with zero being “very poor” and ten “almost perfect”. Further, we assessed multiple experiences in the last days of life, such as symptom burden, preparedness for life closure, awareness of impending death, and care in the last days of life. We analyzed which of these factors was related to the quality of dying score, and subsequently whether the related factors represented specific domains of the dying phase.
Relatives rated the overall score of QOD on average at 6.3 (sd 2.7) with a range from 0-10.
During the last day(s) of life, 26% of the patients, and 49% of the relatives had been fully aware of imminent death. In the end 39% of the patients and 50% of the relatives had said goodbye; 77% of the patients had died in the presence of a relative.
According to relatives patients had suffered moderately to severely from on average 7 out of 22 symptoms.
In 53% relatives reported that in the last 24 hours symptoms had sufficiently been alleviated; efforts to control symptoms had been sufficient in 75%. In 64% relatives had been informed by the physician about the imminence of death, and in 70% they were satisfied about their involvement in decision making. In 55% relatives had experienced sufficient attention to individual preferences and wishes, and in 70% hospital facilities had been sufficient. Patients had been sufficiently affirmed as a person in 63%.
We identified two personal characteristics of the patient and relative, i.e. living in partnership and a relatively young relative-age, being negatively related to the quality of dying score. Of the experiences of the dying phase, 35, some of which are described above, were significantly related to the quality of dying score.
These experiences can be summarized in 9 domains: physical experiences (6 items), psychological experiences (7), acceptance of death (2), preparation on and circumstances of death (5), shared decision making (2), medical care/ symptom treatment (4), personalized care (5), and supportive care/ care for the relatives (4). The latter three domains turned out to affect the quality of dying score most strongly. All domains were correlated and together they explained 34% of the variance in the quality of dying score.
Medical Research: What was most surprising about the results?
Response: Firstly, the high variance of scores, which suggests that the processes of care for the dying are not under control.
Secondly, the importance of addressing the needs of relatives to be involved in the care and decision making.
Finally, the identification of determinants explaining the variance in quality of dying for 34%. This goes beyond the findings of Zhang et al, who could explain 19% of the variance in quality of life at the end of life in cancer patients, which was, to our knowledge, the highest explaining percentage to date.
Medical Research: What should clinicians and patients take away from your report?
Response: Physicians and nurses have to demonstrate that they are consciously addressing the patient’s problems and needs, and they need to timely refer to social or spiritual workers or to the palliative care expert team. Furthermore, attention to the needs of relatives should go beyond attention to their sadness and concerns. Relatives need to be informed on the patient’s condition throughout the process, thereby enabling them to walk along with the patient, and to represent his interests when needed. Patients should timely discuss their needs and preferences with their personal representative.
Medical Research: What recommendations do you have for future research as a result of this study?
Response: There is still a need for more observational research, e.g. to better understanding of the 66% of variance of quality of dying that still remains unclear, and to compare our findings to other hospitals and other care settings. Experimental research is required on interventions to improve the quality of care, e.g. interventions supporting relatives to enable them to be involved in care and decision making in the hospital.