Community end-of-life care during the COVID-19 pandemic: findings of a UK primary care survey

  1. Sarah Mitchell
  2. Phillip Oliver
  3. Clare Gardiner
  4. Helen Chapman
  5. Dena Khan
  6. Kirsty Boyd
  7. Jeremy Dale
  8. Stephen Barclay
  9. Catriona R Mayland

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Abstract

Thousands of people in the UK have required end-of-life care in the community during the COVID-19 pandemic. Primary healthcare teams (general practice and community nursing services) have provided the majority of this care, alongside specialist colleagues. There is a need to learn from this experience in order to inform future service delivery and planning.

Aim

To understand the views of GPs and community nurses providing end-of-life care during the first wave of the COVID-19 pandemic.

Design & setting

A web-based, UK-wide questionnaire survey circulated via professional general practice and community nursing networks, during September and October 2020.

Method

Responses were analysed using descriptive statistics and an inductive thematic analysis.

Results

Valid responses were received from 559 individuals (387 community nurses, 156 GPs, and 16 unspecified roles), from all regions of the UK. The majority reported increased involvement in providing community end-of-life care. Contrasting and potentially conflicting roles emerged between GPs and community nurses. There was increased use of remote consultations, particularly by GPs. Community nurses took greater responsibility in most aspects of end-of-life care practice, particularly face-to-face care, but reported feeling isolated. For some GPs and community nurses, there has been considerable emotional distress.

Conclusion

Primary healthcare services are playing a critical role in meeting increased need for end-of-life care in the community during the COVID-19 pandemic. They have adapted rapidly, but the significant emotional impact, especially for community nurses, needs addressing alongside rebuilding trusting and supportive team dynamics.

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  1. Version published to 10.3399/bjgpo.2021.0095
  2. ScreenIT

    SciScore for 10.1101/2021.02.15.21251756: (What is this?)

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

    Table 1: Rigor

    Institutional Review Board Statementnot detected.
    Randomizationnot detected.
    Blindingnot detected.
    Power Analysisnot detected.
    Sex as a biological variablenot detected.

    Table 2: Resources

    Software and Algorithms
    SentencesResources
    Data analysis: Quantitative data were analysed using descriptive statistics using SPSS (version 26).
    SPSS
    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:
    Strengths and limitations: This is the first UK-wide survey undertaken to understand the impact of the COVID-19 pandemic on healthcare services involved in the provision of community-based end-of-life care. It provides valuable insights into the role of primary healthcare and the findings are highly relevant to practice, service delivery models and policymaking as the pandemic progresses. The minimum number of returns was achieved, but the response rate was low amongst GPs even though the survey was distributed through well-respected professional organisations. This may be due to the timing of the survey, when workload related to the pandemic was high and that there were a large number of other surveys taking place concurrently. The findings are likely to reflect the views of primary care professionals with an active role or interest in palliative care and may not be representative of the wider population of GPs and community nurses. Comparison with existing literature: There is a lack of previous research to inform practice, service delivery or policy (9, 16) despite the importance of the provision of high quality end-of-life care in a pandemic (17, 18). Respondents in this study perceive that their role in the pandemic response has received less focus than the response of hospital care (19, 20). Primary healthcare teams have a pivotal role in end-of-life care, and feeling undervalued may have contributed to the significant emotional distress experienced during COVID-19. The...

    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.

    Results from rtransparent:
    • 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.

    About SciScore

    SciScore is an automated tool that is designed to assist expert reviewers by finding and presenting formulaic information scattered throughout a paper in a standard, easy to digest format. SciScore checks for the presence and correctness of RRIDs (research resource identifiers), and for rigor criteria such as sex and investigator blinding. For details on the theoretical underpinning of rigor criteria and the tools shown here, including references cited, please follow this link.

  3. Version published to 10.1101/2021.02.15.21251756v1 on medRxiv