Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services

  1. Andy Bradshaw
  2. Lesley Dunleavy
  3. Catherine Walshe
  4. Nancy Preston
  5. Rachel L Cripps
  6. Mevhibe Hocaoglu
  7. Sabrina Bajwah
  8. Matthew Maddocks
  9. Adejoke O Oluyase
  10. Katherine Sleeman
  11. Irene J Higginson
  12. Lorna Fraser
  13. Fliss Murtagh
  14. On behalf of the CovPall study team

Reviewed by

Read the full article

Listed in

Log in to save this article

Abstract

Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt.

Aim:

Describe the challenges that UK specialist palliative care services experienced regarding advance care planning during COVID-19 and changes made to support timely conversations.

Design:

Online survey of UK palliative/hospice services’ response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach using the Social Ecological Model to understand challenges.

Respondents:

Two hundred and seventy-seven services.

Results:

More direct advance care planning was provided by 38% of services, and 59% provided more support to others. Some challenges to advance care planning pre-dated the pandemic, whilst others were specific to/exacerbated by COVID-19. Challenges are demonstrated through six themes: complex decision making in the face of a new infectious disease; maintaining a personalised approach; COVID-19-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support: adapting local processes and adapting local structures.

Conclusions:

Professionals and healthcare providers need to ensure advance care planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person. Policymakers need to consider how high-quality advance care planning can be resourced as a part of standard healthcare ahead of future pandemic waves. In facilitating this, we provide questions to consider at each level of the Social Ecological Model.

Article activity feed

  1. Version published to 10.1177/02692163211017387
  2. ScreenIT

    SciScore for 10.1101/2020.10.28.20200725: (What is this?)

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

    Table 1: Rigor

    Institutional Review Board StatementIRB: Ethical approval was obtained from King’s College London Research Ethics committee (LRS-19/20-18541).
    Randomizationnot detected.
    Blindingnot detected.
    Power Analysisnot detected.
    Sex as a biological variablenot detected.

    Table 2: Resources

    Software and Algorithms
    SentencesResources
    (20) Survey and data collection: REDCap was used to securely build and host the survey which aimed to understand how palliative care services responded to the COVID-19 pandemic, and comprised of closed- and free-text responses (full survey in supplementary file 1 and procedures for survey are provided in supplementary file 2).
    REDCap
    suggested: (REDCap, RRID:SCR_003445)
    Free text responses were analysed in NVivo (v12) using a thematic Framework approach.
    NVivo
    suggested: (NVivo, RRID:SCR_014802)

    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, limitations, and future research: This survey received a high number of respondents from all palliative care settings: Hospice UK report approximately 200 hospice services across the UK; 168 (∼ 84%) responded to this survey. (53) The timely delivery of the survey enabled capture of changes across the peak of the first wave of COVID-19 in the UK. ACP is influenced and moderated by contextual and cultural-dependant factors. (54, 55) Whilst many of the findings of this paper may be applicable in these contexts, more research that explores international and cultural differences regarding ACP during COVID-19 is needed. Survey data was collected at a single time-point and so the processes through which challenges to ACP changed over time, and the longer-term impact, sustainability, and effectiveness of changes are not always clear.

    Results from TrialIdentifier: We found the following clinical trial numbers in your paper:

    IdentifierStatusTitle
    ISRCTN16561225NANA

    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 10.1101/2020.10.28.20200725v1 on medRxiv