Dying in times of COVID-19: Experiences in different care settings – An online questionnaire study among bereaved relatives (the CO-LIVE study)

Abstract

Background: The COVID-19 pandemic and restricting measures have affected end-of-life care across different settings. Aim: To compare experiences of bereaved relatives with end-of-life care for a family member or friend who died at home, in a hospital, nursing home or hospice during the pandemic. Design: An open observational online survey was developed and disseminated via social media and public fora (March–July 2020). Data were analyzed using descriptive statistics and logistic regression analyses. Participants: Individuals who lost a family member or friend in the Netherlands during the COVID-19 pandemic. Results: The questionnaire was filled out by 393 bereaved relatives who lost a family member or friend at home ( n = 68), in a hospital ( n = 114), nursing home ( n = 176) or hospice ( n = 35). Bereaved relatives of patients who died in a hospital most often evaluated medical care (79%) as sufficient, whereas medical care (54.5%) was least often evaluated as sufficient in nursing homes. Emotional support for relatives was most often evaluated as sufficient at home (67.7%) and least often in nursing homes (40.3%). Sufficient emotional support for relatives was associated with a higher likelihood to rate the place of death as appropriate. Bereaved relatives of patients who died at a place other than home and whose care was restricted due to COVID-19 were less likely to evaluate the place of death as appropriate. Conclusion: End-of-life care during the COVID-19 pandemic was evaluated least favourably in nursing homes. The quality of emotional support for relatives and whether care was restricted or not were important for assessing the place of death as appropriate.

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

“…Fortunately, meaningful communication can be helpful even if the relatives are not present [ 23 ], and in our study 80% of the relatives received information about the person’s medical condition, both for those with and without a COVID-19 infection. Corresponding numbers have been found in previous studies during the pandemic [ 12 , 24 ].…”

“…The questionnaire (iCODE) used in the study is a validated and previously used measure of end-of-life care, allowing the results to be compared to other studies. In addition, the changes made in the questionnaire are the same as in several other studies, thus increasing the ability to compare results [ 12 , 13 , 17 ]. The relatives’ beliefs of higher levels of breathlessness in the COVID group suggests that the reporting of COVID status was accurate.…”

“…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).…”

Trends in Palliative Care Research During the COVID-19 Pandemic

“… 9 An open observational online survey completed by bereaved relatives revealed that respondents who received emotional support under restrictive isolation policies were more likely to consider the place of their family member’s death as appropriate than did respondents who did not receive such support. 31 …”

Social Representations of COVID-19 Among Brazilian Elderly Women: A Structural Approach

“…The massive losses caused by the COVID-19 pandemic had psychosocial consequences (Carvalho et al, 2021). In many situations, it was not possible to say goodbye to the beloved ones who died (Giamattey et al, 2022;Pauli et al, 2022;Yildiz et al, 2022). On the other hand, the losses, in the COVID-19 scenario, are experimented in multiple forms: loss of the normal life, loss of jobs or loss of physical intimacy (Ramadas & Vijayakumar, 2021).…”