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.

Dying during the COVID-19 Pandemic in Sweden: Relatives’ Experiences of End-of-Life Care (the CO-LIVE Study)

“…This was a nation-wide observational study with questionnaires sent to relatives of patients who died during the COVID-19 pandemic. The study was performed in cooperation with the international CO-LIVE study group [ 10 , 11 , 12 , 13 , 14 ] and the survey was adapted from an affiliated Horizon 2020 project, the iLIVE Project ( , accessed 1 December 2022).…”

Patient and family members’ experiences with language and environment when receiving bad news: A qualitative exploratory study

“…As 13 of the 14 participants in this study were not classified as being in a terminal phase during the Covid-19 lockdowns, hospital visitor restrictions resulted in patients and family members reporting feelings of depression, helplessness, and isolation when unable to be together during an admission, with similar findings noted elsewhere (Bloomer and Walshe 2021;Pauli et al 2022). Socialization and routine sharing of meals were blocked, creating a nontherapeutic social environment as only those actively dying could have visitation rights (Department of Health 2022).…”

“…Providing an emotionally safe environment during the delivery of bad news (depending on personal preferences) includes having a support person present to reassure, encourage, listen, and digest the bad news alongside them (Hart et al 2020;Keeley 2016). Despite palliative care best practice (Australian Commission on Safety and Quality in Health Care [ACSQHC] 2015), social restrictions to prevent the spread of the Covid-19 virus forced many of the participants to be and receive bad news alone, in line with other recent findings (Bloomer and Walshe 2021;Kirby et al 2021;Pauli et al 2022).…”

Perspectives of family‐centred care at the end of life during the COVID‐19 pandemic: A qualitative descriptive study

“…Poor or inadequate communication was a key theme amongst both participant groups in this research. Even before the COVID‐19 pandemic, honest, effective (Virdun et al, 2015) and regular communication (Pauli et al, 2022), delivered with skill and sensitivity (Bloomer et al, 2017) was recognised as fundamental to family care before and after death. Clear, transparent and regular communication is also key to supporting nurses' work during the pandemic (Nowell et al, 2021).…”