The Quality of End‐of‐Life Care in Japan in 2021: A Mortality Follow‐Back Study During the COVID ‐19 Pandemic

BACKGROUND: The COVID-19 pandemic disrupted end-of-life (EOL) care for patients with incurable non-communicable diseases. This study evaluated the overall quality of EOL care and achievement of a good death in Japan during the pandemic, particularly focusing on hospital deaths. METHODS: Questionnaires were mailed to 26 969 bereaved family members of patients aged ≥ 20 years who died in 2021 from the 10 leading causes of death in Japan. Causes were grouped into six categories: cancer, cardiovascular disease, renal failure, respiratory diseases, neurocognitive disorders, and senility. Outcomes were (1) perceived quality of EOL care, measured with the Care Evaluation Scale (CES), and (2) achievement of a good death, measured with the Good Death Inventory (GDI). RESULTS: We received 10 890 responses (50.9%); 3619 hospital deaths were analyzed. Perceived quality of EOL care was generally high during the pandemic (73.3%-92.9%). Within CES, "family care" was lowest across diseases, yet 73.3%-78.6% perceived care as good quality. For the GDI item "being free from physical distress," achievement was 37.6% in cancer and 65.8% in senility. After adjusting for age and sex, achievement of a good death did not vary by disease, except for pathophysiology-related symptom items (e.g., pain and cognitive function). CONCLUSION: During the pandemic, "family care" was rated lower, yet it became especially important under visiting restrictions. Approximately one in three people dying of senility experienced pain, indicating a need for closer attention from caregivers. Within good-death outcomes, person-centered items did not vary by disease-an encouraging finding in universal EOL care.