Dying Patients' Quality of Care for Five Common Causes of Death: A Nationwide Mortality Follow-Back Survey.

Abstract

Background: The importance of high-quality care for terminal patients is being increasingly recognized; however, quality of care (QOC) and quality of death and dying (QOD) for noncancer patients remain unclear. Objectives: To clarify QOC and QOD according to places and causes of death. Design, Subjects: A nationwide mortality follow-back survey was conducted using death certificate data for cancer, heart disease, stroke syndrome, pneumonia, and kidney failure in Japan. The questionnaire was distributed to 115,816 bereaved family members between February 2019 and February 2020. Measurements included QOC, QOD, and symptoms during the last week of life. Analyses used generalized estimating equations adjusting for age, sex, and region. Results: Valid responses were returned by 62,576 (54.0%). Family-reported QOC and QOD by the place of death were significantly higher at home than in other places across all causes of death (for all combinations with hospital p < 0.01). In stroke syndrome and pneumonia, QOD significantly differed between hospital and home (stroke syndrome: 57.1 vs. 72.4, p < 0.001, effect size 0.77; pneumonia: 57.3 vs. 71.1, p < 0.001, effect size 0.78). No significant differences were observed in QOC and QOD between cancer and noncancer. The prevalence of symptoms was higher for cancer than for other causes of death. Conclusions: QOC and QOD were higher at home than in other places of death across all causes of death. The further expansion of end-of-life care options is crucial for improving QOC and QOD for all terminal patients.