Dying in the era of COVID-19: Experiences of bereaved relatives on end-of-life care in different settings in the netherlands (the co-live study)-an online questionnaire study

ABSTRACT

Background: The COVID-19 pandemic and restricting measures may have affected end-of life care, including experiences of relatives who lost a loved one. Aims: To describe experiences of bereaved relatives with end-of-life care for a loved one who died at home, in a hospital, nursing home or hospice during the pandemic, and to examine how restricting measures influenced their evaluation of care. Methods: Bereaved relatives completed an open observational online questionnaire about their evaluation of end-of-life care as provided to a loved one who died between March and July 2020. Results: The questionnaire was filled out by 393 bereaved relatives whose loved ones died at home (n=68), in a hospital (n=114), nursing home (n=176) or hospice (n=35). Patients who had died were more often men (49% vs 47%), aged 75 years or older (72%), and had COVID- 19 (57%). Patients who died in a hospital more often had COVID-19 (76%) than patients in nursing homes (62%), hospices (43%) or at home (18%). Bereaved relatives were mostly women (81%), aged 45 years or older (82%), and a child (55%) of the patient. Bereaved relatives of patients who died in a hospital most often evaluated medical (79%), nursing (75%) and personal care (72%) as sufficient, whereas medical (55%) and personal care (62%) in nursing homes and nursing care at home (66%) were least often evaluated as sufficient. Hospitals, nursing homes and hospices had implemented visiting restrictions in the majority of cases (76%, 90%, 71%, respectively). These restrictions were negatively associated with bereaved relatives' evaluation of medical and personal care in nursing homes, and medical care in hospitals. Conclusion: End-of-life care during the COVID-19 pandemic was evaluated most favourably in hospitals and least favourably in nursing homes. Our study suggests that visiting restrictions had a major impact, especially in nursing homes.