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The challenges of caring for people dying from COVID-19: a multinational, observational study (CovPall)

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Adejoke Oluyase, Mevhibe Hocaoglu, Rachel Cripps, Matthew Maddocks, Catherine Walshe, Lorna K. Fraser, Nancy Preston, Lesley Dunleavy, Andy Bradshaw, Fliss E.M. Murtagh, Sabrina Bajwah, Katherine Sleeman, Irene Higginson

Original languageEnglish
Pages (from-to)460-470
Number of pages11
JournalJournal of Pain and Symptom Management
Volume62
Issue number3
DOIs
Accepted/In press30 Jan 2021
PublishedSep 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 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). The funders of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report. 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. 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). The funders of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report. Funding Information: 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 NIHR Career Development Fellowship (CDF-2017-10-009) and NIHR ARC SL. LF is funded by a NIHR Career Development Fellowship (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: © 2021 The Authors Copyright: Copyright 2021 Elsevier B.V., All rights reserved.

King's Authors

Abstract

Context: Systematic data on the care of people dying with COVID-19 are scarce. Objectives: To understand the response of and challenges faced by palliative care services during the COVID-19 pandemic, and identify associated factors. Methods: We surveyed palliative care and hospice services, contacted via relevant organizations. Multivariable logistic regression identified associations with challenges. Content analysis explored free text responses. Results: A total of 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world; 81% cared for patients with suspected or confirmed COVID-19, 77% had staff with suspected or confirmed COVID-19; 48% reported shortages of Personal Protective Equipment (PPE), 40% staff shortages, 24% medicines shortages, 14% shortages of other equipment. Services provided direct care and education in symptom management and communication; 91% changed how they worked. Care often shifted to increased community and hospital care, with fewer admissions to inpatient palliative care units. Factors associated with increased odds of PPE shortages were: charity rather than public management (OR 3.07, 95% CI 1.81–5.20), inpatient palliative care unit rather than other settings (OR 2.34, 95% CI 1.46–3.75). Being outside the UK was associated with lower odds of staff shortages (OR 0.44, 95% CI 0.26–0.76). Staff described increased workload, concerns for their colleagues who were ill, whilst expending time struggling to get essential equipment and medicines, perceiving they were not a front-line service. Conclusion: Palliative care services were often overwhelmed, yet felt ignored in the COVID-19 response. Palliative care needs better integration with health care systems when planning and responding to future epidemics/pandemics.

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