Place, cause and expectedness of death and relationship to the deceased are associated with poorer experiences of end-of-life care and challenges in early bereavement : risk factors from an online survey of people bereaved during the COVID-19 pandemic

Objectives: 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.

Design: Online open national survey of adults bereaved in the UK from 16 March 2020-5 January 2021, recruited via media, social media, national associations and organisations.

Setting: General population, UK.

Participants: 711 participants, mean age 49.5 (SD 12.9, range 18-90). 395 (55.6%) had experienced the death of a parent, 152 (21.4%) a partner. 628 (88.6%) were female and 33 (4.7%) from a minority ethnic background. The mean age of the person who died was 72.2 (SD 16.1, range miscarriage to 102 years). 311 (43.8%) deaths were from confirmed/suspected COVID-19, and 410 (57.8%) deaths occurred in hospital.

Main outcome measures: End-of-life care experiences (six items, e.g. involvement in care decisions) and pandemic-related challenges before and after death (six items, e.g. unable to visit prior to death).

Results: Deaths in hospital/care home increased the likelihood of: unable to visit prior to death, unable to say goodbye as wanted, limited contact in last days of life (all P<0.001). Deaths in hospice/at home increased the likelihood of: involved in care decisions (P<0.001), well supported by healthcare professionals (HCPs) after the death (P=0.003). Hospice deaths increased the likelihood of being given bereavement support information, which was least likely for care home deaths (P<0.001). Hospital deaths decreased the likelihood of knowing the contact details for the responsible care professional (P=0.001). Bereavement due to COVID-19 decreased the likelihood of: involvement in care decisions (P<0.001), feeling well supported by HCPs after the death (P<0.001), and increased the likelihood of: being unable to say goodbye (OR=0.348; 95% CI: 0.2 to 0.605), social isolation and loneliness (OR=0.439; 95% CI: 0.261 to 0.739), limited contact with relatives/friends (OR=0.465; 95% CI: 0.254 to 0.852). Expected deaths were associated with higher likelihood of feeling involved, informed, and well supported by HCPs (all P<0.001). The deceased being a partner or child increased the likelihood of knowing the contact details for the responsible care professional (P=0.001), being able to visit (P<0.001) and given bereavement support information (P<0.001). Being a bereaved partner strongly increased odds of social isolation and loneliness, e.g. OR = 0.092 (95% CI: 0.028 to 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.