Dying in the hospital: What happens and what matters, according to bereaved relatives
Journal of Pain and Symptom Management , Volume 49 - Issue 2 p. 203- 213
Context Most deaths in Western countries occur in hospital, but little is known about factors determining the quality of dying (QOD). Objectives The aim was to assess the QOD in hospital as experienced by relatives and identify factors related to QOD. Methods A cross-sectional study on 18 wards of a university hospital in The Netherlands was conducted, including relatives of patients who died after an admission of more than six hours, from June 2009 to March 2011. Relatives' perceptions of QOD and quality of care and the relation between dimensions of QOD and overall QOD scores were assessed. Results Two hundred forty-nine relatives participated (51%) and rated overall QOD at 6.3 (SD 2.7; range 0-10). According to relatives, patients suffered from 7.0 (SD 5.8) of 22 symptoms and were at peace with imminent death in 37%. Patients had been aware of imminent death in 26%, and relatives were aware in 49%. Furthermore, 39% of patients and 50% of relatives had said good-bye, and 77% of patients died in the presence of a relative. Symptom alleviation was sufficient in 53%, and in 75%, sufficient efforts had been made to relieve symptoms. Characteristics of QOD and quality of care could be summarized in nine domains, explaining 34% of the variation of QOD scores. Medical, personalized, and supportive care were most strongly related to QOD. Conclusion Relatives rated QOD as sufficient. A majority of patients and relatives were not sufficiently prepared for imminent death, and relatives experienced many problems. QOD appears to be a multidimensional construct, strongly affected by medical care and staff attentiveness.