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

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.

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).

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).

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.