Risk factors associated with poorer experiences of end-of-life care and challenges in early bereavement: Results of a national online survey of people bereaved during the COVID-19 pandemic

  1. Lucy Ellen Selman
  2. DJJ Farnell
  3. M Longo
  4. S Goss
  5. K Seddon
  6. A Torrens-Burton
  7. CR Mayland
  8. D Wakefield
  9. B Johnston
  10. A Byrne
  11. E Harrop

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Abstract

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.

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  1. Version published to 10.1177/02692163221074876
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    SciScore for 10.1101/2021.09.09.21263341: (What is this?)

    Please note, not all rigor criteria are appropriate for all manuscripts.

    Table 1: Rigor

    NIH rigor criteria are not applicable to paper type.

    Table 2: Resources

    Software and Algorithms
    SentencesResources
    All calculations were carried out using SPSS V26.
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    suggested: (SPSS, RRID:SCR_002865)

    Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).

    Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:
    Despite these limitations, group sizes were sufficient to enable comparisons (although not to the level of specific ethnic groups) and, while not providing population-level prevalence data, the sample does enable, for the first time, identification of risk factors to inform future practice and policy. Bereaved people reported worse experiences in relation to hospital and care home deaths than deaths at home or hospice, as in pre-pandemic studies25-28. In the first ten weeks of the pandemic in the UK, deaths in care homes increased by 220%, and home and hospital deaths by 77% and 90%, respectively, while hospice deaths fell by 20%29. The increase in home deaths was sustained30 and hospices shifted their resources to the community31. Our findings suggest that despite the rise in home deaths during the pandemic, they were associated with better experiences of end-of-life care than deaths in other settings, indicating that primary and community care services were successful in supporting home deaths, particularly in light of the additional pressures on services32. The finding that COVID-19 deaths were associated with poorer end-of-life and early bereavement experiences lends some support to the hypothesis that the pandemic will increase levels of prolonged grief disorder and other longer-term poor bereavement outcomes. Among the COVID-19 bereaved, such outcomes might be explained by the higher likelihood of poor end-of-life care experiences when a death is unexpected as well as t...

    Results from TrialIdentifier: No clinical trial numbers were referenced.

    Results from Barzooka: We did not find any issues relating to the usage of bar graphs.

    Results from JetFighter: We did not find any issues relating to colormaps.

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    • Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
    • Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
    • No protocol registration statement was detected.

    Results from scite Reference Check: We found no unreliable references.

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  3. Version published to 10.1101/2021.09.09.21263341v1 on medRxiv