Providing End-of-Life Care for Patients Dying of COVID-19 and Their Families in Isolated Death During the Pandemic in Japan: The Providing End-of-life Care for COVID-19 Project

BACKGROUND: Death resulting from COVID-19 in a hospital during the pandemic has meant death in isolation. Although many health care providers (HCPs) have struggled with end-of-life (EOL) care for these patients, the various strategies across hospitals are not well known. RESEARCH QUESTION: What EOL care did HCPs give patients dying of COVID-19 and their families in hospitals during the COVID-19 pandemic? What were the key themes in care? STUDY DESIGN AND METHODS: This qualitative study used individual, semistructured, internet, and face-to-face interviews. We recruited HCPs who provided EOL care to patients with COVID-19 dying in hospitals and their families. Purposive sampling was used through the academic networks at the School of Public Health, Kyoto University. Anonymized verbatim transcripts were analyzed thematically. RESULTS: Fifteen doctors and 18 nurses from 23 hospitals in 13 regions across Japan participated; 16 participants (48%) were women, with an age range of 20 to 59 years (most were 30-39 years of age). Participants described 51 strategies, including providing physical and psychological-spiritual care, making connections, providing death care, and arranging care environments and bereavement care for patients and their families. Four themes emerged as prominent efforts in COVID-19 EOL care: maintaining relationships with isolated patients, connecting patients and families, sharing decision-making in isolation, and creating humanistic episodes. INTERPRETATION: Proper application and awareness of the four themes may help HCPs to implement better EOL care. To compensate for limited memories resulting from isolation and rapid progression of the disease, communicating and creating humanistic episodes are emphasized. ICU diaries and the HCPs’ arrangements based on cultural funerary procedures could be provided as grief care for the family and to build trust. EOL education and building partnerships among palliative care staff and nonmedical personnel on a regular basis may enhance the capacity to deliver the necessary support for EOL care.