Association between family-perceived quality of death and dying, prognostic awareness, and end-of-life discussions in five common diseases: a nationwide mortality follow-back study

INTRODUCTION: Discussing prognosis and end-of-life (EOL) care with patients and physicians is a sensitive and critical aspect of EOL care. However, the association between prognostic awareness and EOL discussions and the quality of death and dying (QOD) remains uncertain. This study aimed to describe prognostic awareness and participation in EOL discussions among patients with common causes of death and to clarify their association with QOD. METHODS: Retrospective nationwide mortality follow-back survey in Japan (Feb 2019; Feb 2020). Bereaved families of patients who died in hospitals or at home from cancer, heart disease, cerebrovascular disease, pneumonia, or renal failure. The primary outcome was family-reported QOD. Exposures of interest included family-reported prognostic awareness and EOL discussions, including care settings and code statuses. Analyses were conducted separately by disease category and place of death. Logistic regression and generalized linear models were used for analysis. RESULTS: Of the 115,861 family members who were sent the questionnaires, we finally analyzed 50,641 responses. Accurate patient prognostic awareness ranged from 56.8% to 70.2% for patients with cancer and from 30.5% to 53.3% for patients with non-cancer diseases. Patient-physician discussions about care settings occurred in 36.4%-54.8% of hospital deaths and 67.8%-81.5% of home deaths across diseases. There were small differences in the QOD scores between patients with accurate and inaccurate prognostic awareness across most subgroups. However, participation in EOL discussions was associated with higher QOD scores than non-participation. The largest QOD score difference was observed in patients who died from pneumonia in hospitals, with discussions about care settings (64.0 versus without 42.6) showing a difference of 21.4 (95% confidence interval: 16.3, 26.5). CONCLUSIONS: Participation in EOL discussions was associated with higher family-reported QOD across diseases and places of death in this observational study. Similar patterns were observed among patients who died in hospital settings. These findings suggest that EOL discussions may be related to QOD beyond the final place of death.