Abstract
Background:
Experiences of end-of-life care and early bereavement during the COVID-19 pandemic are poorly understood.
Aim:
To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement, to inform clinical practice, policy and bereavement support.
Design:
Online national survey of adults bereaved in the UK (deaths between 16 March 2020 and 2 January 2021), recruited via media, social media, national associations and organisations.
Setting/participants:
711 participants, mean age 49.5 (SD 12.9, range 18–90). 628 (88.6%) were female. Mean age of the deceased was 72.2 (SD 16.1, range miscarriage to 102 years). 311 (43.8%) deaths were from confirmed/suspected COVID-19.
Results:
Deaths in hospital/care home increased the likelihood of poorer experiences at the end of life; for example, being unable to visit or say goodbye as wanted (p < 0.001). COVID-19 was also associated with worse experiences before and after death; for example, feeling unsupported by healthcare professionals (p < 0.001), social isolation/loneliness (OR = 0.439; 95% CI: 0.261–0.739), and limited contact with relatives/friends (OR = 0.465; 95% CI: 0.254–0.852). Expected deaths were associated with a higher likelihood of positive end-of-life care experiences. The deceased being a partner or child also increased the likelihood of positive experiences, however being a bereaved partner strongly increased odds of social isolation/loneliness, for example, OR = 0.092 (95% CI: 0.028–0.297) partner versus distant family member.
Conclusions:
Four clear risk factors were found for poorer end-of-life care and pandemic-related challenges in bereavement: place, cause and expectedness of death, and relationship to the deceased.
Experiences of end-of-life care and early bereavement during the COVID-19 pandemic are poorly understood.
Aim:
To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement, to inform clinical practice, policy and bereavement support.
Design:
Online national survey of adults bereaved in the UK (deaths between 16 March 2020 and 2 January 2021), recruited via media, social media, national associations and organisations.
Setting/participants:
711 participants, mean age 49.5 (SD 12.9, range 18–90). 628 (88.6%) were female. Mean age of the deceased was 72.2 (SD 16.1, range miscarriage to 102 years). 311 (43.8%) deaths were from confirmed/suspected COVID-19.
Results:
Deaths in hospital/care home increased the likelihood of poorer experiences at the end of life; for example, being unable to visit or say goodbye as wanted (p < 0.001). COVID-19 was also associated with worse experiences before and after death; for example, feeling unsupported by healthcare professionals (p < 0.001), social isolation/loneliness (OR = 0.439; 95% CI: 0.261–0.739), and limited contact with relatives/friends (OR = 0.465; 95% CI: 0.254–0.852). Expected deaths were associated with a higher likelihood of positive end-of-life care experiences. The deceased being a partner or child also increased the likelihood of positive experiences, however being a bereaved partner strongly increased odds of social isolation/loneliness, for example, OR = 0.092 (95% CI: 0.028–0.297) partner versus distant family member.
Conclusions:
Four clear risk factors were found for poorer end-of-life care and pandemic-related challenges in bereavement: place, cause and expectedness of death, and relationship to the deceased.
| Original language | English |
|---|---|
| Pages (from-to) | 717-729 |
| Number of pages | 13 |
| Journal | Palliative Medicine |
| Volume | 36 |
| Issue number | 4 |
| Early online date | 17 Feb 2022 |
| DOIs | |
| Publication status | E-pub ahead of print - 17 Feb 2022 |
Bibliographical note
Funding Information:Our thanks to everyone who completed the survey for sharing their experiences, and to all the individuals and organisations that helped disseminate the survey. We would also like to thank the project assistants, collaborators and advisory group members who are not co-authors on this publication: Dr. Emma Carduff, Dr. Daniella Holland-Hart, Dr. Kali Barawi, Prof. Annmarie Nelson, Dr. Linda Machin, Dr. Eileen Sutton, Dr. Audrey Roulston, Dr. Anne Finucane, Dr. Kirsten Smith and Alison Penny. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the UKRI/ESRC (Grant No. ES/V012053/1). The project was also supported by the Marie Curie core grant funding to the Marie Curie Research Centre, Cardiff University (grant no. MCCC-FCO-11-C). EH, AB and ML posts are supported by the Marie Curie core grant funding (grant no. MCCC-FCO-11-C). AB is funded by Welsh Government through Health and Care Research Wales. KS is funded by the Medical Research Council (MR/V001841/1). The funders had no role in the study design or in the collection, analysis, interpretation of data, writing of the report or decision to submit the article for publication. The researchers are independent from the funders and all authors had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the analysis.
Publisher Copyright:
© The Author(s) 2022.
Research Groups and Themes
- Palliative and End of Life Care
Keywords
- Grief
- pandemics
- bereavement
- coronavirus infections
- bereavement services
- terminal care