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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

Research output: Contribution to journalArticlepeer-review

On behalf of the CovPall study team

Original languageEnglish
Pages (from-to)1225-1237
Number of pages13
JournalPalliative Medicine
Volume35
Issue number7
DOIs
Accepted/In press2021
PublishedJul 2021

Bibliographical note

Funding Information: This study was part of CovPall, a multi-national study, supported by the Medical Research Council, National Institute for Health Research Applied Research Collaboration South London and Cicely Saunders International. We thank all collaborators and advisors. We thank all participants, partners, PPI members and our Study Steering Group. We gratefully acknowledge technical assistance from the Precision Health Informatics Data Lab group ( https://phidatalab.org ) at National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London for the use of REDCap for data capture. Funding Information: This study was part of CovPall, a multi-national study, supported by the Medical Research Council, National Institute for Health Research Applied Research Collaboration South London and Cicely Saunders International. We thank all collaborators and advisors. We thank all participants, partners, PPI members and our Study Steering Group. We gratefully acknowledge technical assistance from the Precision Health Informatics Data Lab group (https://phidatalab.org) at National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King?s College London for the use of REDCap for data capture. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by Medical Research Council grant number MR/V012908/1. Additional support was from the National Institute for Health Research (NIHR), Applied Research Collaboration, South London, hosted at King?s College Hospital NHS Foundation Trust, and Cicely Saunders International (Registered Charity No. 1087195). IJH is a National Institute for Health Research (NIHR) Emeritus Senior Investigator and is supported by the NIHR Applied Research Collaboration (ARC) South London (SL) at King?s College Hospital National Health Service Foundation Trust. IJH leads the Palliative and End of Life Care theme of the NIHR ARC SL and co-leads the national theme in this. MM is funded by a National Institute for Health Research (NIHR) Career Development Fellowship (CDF-2017-10-009) and NIHR ARC SL. LF is funded by a NIHR Career Development Fellowship (award CDF-2018-11-ST2-002). KS is funded by a NIHR Clinician Scientist Fellowship (CS-2015-15-005). RC is funded by Cicely Saunders International. FEM is a NIHR Senior Investigator. MBH is supported by the NIHR ARC SL. The views expressed in this article are those of the authors and not necessarily those of the NIHR, or the Department of Health and Social Care. Publisher Copyright: © The Author(s) 2021. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.

King's Authors

Abstract

Background: 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.

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