AbstractObjectivesTo identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement.DesignOnline 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.SettingGeneral population, UK.Participants711 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 measuresEnd-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).ResultsDeaths 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.ConclusionsFour 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.What is already known on this topic?Since the start of the pandemic, over 20 million family members and friends have been bereaved due to COVID-19, with millions more bereaved due to other causes.Bereavement of any cause during the COVID-19 pandemic is associated with specific challenges, including limited access to people before their death, pressure on health and social care providers, quarantining due to infection or exposure, lockdowns and social distancing.There remains little evidence to inform optimal clinical practice, bereavement support and the policy response to COVID-19 as a mass bereavement event.What this study addsOur study highlights four risk factors for poorer end-of-life care and increased risk of pandemic-related challenges in early bereavement: place, cause and expectedness of death and relationship to the deceased.COVID-19 deaths, hospital and care home deaths and unexpected deaths were generally associated with poorer outcomes, while being a partner of the person who died (regardless of cause) and bereavement due to COVID-19 increased the odds of experiencing social isolation and loneliness in bereavement.These factors should be taken into account in clinical practice, policy and bereavement support.
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