It’s like standing in front of a prison fence – Dying during the SARS-CoV2 pandemic: A qualitative study of bereaved relatives’ experiences

Abstract

Background: Since the onset of the SARS CoV2 pandemic, protective and isolation measures had a strong impact on the care and support provided to seriously ill and dying people at the end-of-life. Aim: Exploring bereaved relatives’ experiences of end-of-life care during the SARS-CoV2 pandemic. Design: Qualitative interview study with bereaved relatives. Participants: Thirty-two relatives of patients who died during the pandemic, regardless of infection with SARS-CoV2. Results: Three core categories were identified: needs, burden and best practice. Relatives wished for a contact person responsible for providing information on the medical and mental condition of their family members. The lack of information, of support by others and physical closeness due to the visiting restrictions, as well as not being able to say goodbye, were felt as burdens and led to emotional distress. However, case-by-case decisions were made and creative ways of staying in touch were experienced positively. Conclusions: Our results indicate that the strong need for closeness when a family member was dying could not be met due to the pandemic. This led to suffering that can be prevented. Visits need to be facilitated by making considered decisions on a case-by-case basis. For easy communication with relatives, approaches should be made by healthcare professionals and support for virtual communication should be offered. Furthermore, the results of the study can help to implement or develop ideas to enable dignified farewells even during pandemics.