Bereaved Family Members' Perceived Care at the End of Life for Patients with Noncancerous Respiratory Diseases

Background: Data regarding the quality of end-of-life care for patients with noncancerous illnesses are lacking. Objective: This study aimed to evaluate end-of-life care for patients with noncancerous respiratory disease from the perspective of bereaved family members and explore the factors associated with the quality of patient death and care. Design: This cross-sectional study included patients who had died of noncancerous respiratory disease in general wards of pulmonary department in Japan between 2014 and 2016 and conducted an anonymous self-report questionnaire survey for the patients' bereaved family members. Measurements: We evaluated overall satisfaction with care and the quality of death and end-of-life care using the Good Death Inventory (GDI) and Care Evaluation Scale (CES), respectively. A multiple linear regression analysis was performed to explore the factors associated with these outcomes. Results: In total, 130 questionnaires were distributed, and the effective response rate was 38% and 50 patients were included (median age: 82 [range 58–101] years; 37 men [74%]). Primary diagnoses at death included 29 cases of pneumonia (58%), 15 interstitial lung disease (30%), and 3 chronic obstructive pulmonary disease (6%). Of the bereaved family members, 26 (52%) were spouses, and 19 (38%) were children (median age [range]: 68 [33–102] years, 15 men [30%]). The overall CES and GDI scores (mean ± standard deviation) were 77 ± 15 and 79 ± 15, respectively. The presence of dementia was an independent factor associated with high CES and GDI scores in the multiple linear regression analysis. Conclusions: In patients who died of noncancerous respiratory disease, the presence of dementia could be associated with the higher quality of patient death and care. In dementia, an understanding of the terminal nature of this condition may lead to an appropriate end-of-life care.