End of life experiences during the COVID-19 pandemic: Results of a national survey of bereaved people

ABSTRACT

Background: From March 2020-March 2021 530,000+ people have died from COVID-19 in the EU, and 120,000+ in the UK. In addition, c.4.85 million in the region have died of other causes, leaving c.43.6 million people bereaved at a time of unprecedented social and clinical restrictions. We aimed to inform practice and policy by describing end of life experiences among people bereaved during the pandemic. Methods: National survey of people bereaved in the UK since March 2020, disseminated via media, social media, national associations, community/ charitable organisations. Results: Interim findings from the first 532 participants are reported (full results available by time of conference). 55% of deaths were in hospital;46% were caused by confirmed/suspected COVID-19. Respondents reported high levels of problems specific to the pandemic bereavement context 56% were unable to visit their loved one prior to death, 59% had limited contact in last days of life, 67% were unable to say goodbye, 67% experienced social isolation and loneliness, 81% had limited contact with other relatives/friends. COVID-19 deaths were associated with higher levels of all these problems compared with other causes of death (all p < 0.05). Experiences of end of life care were variable 23% were 'never' involved in decisions about their loved one's care, 17% were not at all informed about the approaching death, 36% felt not at all supported by healthcare professionals after the death, 51% were not provided with information about bereavement support. Conclusions: There is evidence of poor end of life care and challenging experiences among people bereaved during the pandemic. To reduce the trauma of negative death experiences, we recommend improved communication by healthcare professionals, with a known point and method of contact, family involvement in decision-making, enabling family visiting as far as possible, and better support after a death, including information about bereavement services.