CovPall: Rapid Evaluation of the COVID-19 Pandemic Response in Palliative & End of Life Care
Although many people recover from COVID-19, some have very severe symptoms, and sadly, some die. To support people in many settings, palliative care services and hospices have rapidly changed how they work. They are supporting existing patients who do not have COVID-19, and also those with COVID-19 who have severe symptoms or are dying. In addition, the symptoms that people experience, and the best treatments for these symptoms, are not well understood. Therefore, there is an urgent need to understand how palliative and end-of-life care services have responded to COVID-19. Learning from each other will speed up the responses and help future plans.
Through this CovPall Project, we want to understand how palliative care services and hospices are responding to COVID-19 and how to best respond.
Aims
- To find out how palliative care and hospice services have changed, how their staff, volunteers and others have adapted what they do, and their challenges and innovations. We have referred to this as Work Package 1 (WP1).
- To know what symptoms and problems patients have, how they change over time, what treatments/therapies are used and what seems to work best. We have referred to this as Work Package 2 (WP2).
Methods
This CovPall Project includes a cross-sectional online survey of palliative care services & hospices and a multicentre cohort study of COVID-19 patients seen and treated by palliative care services.
Summary of Findings
During Work Package 1, 458 services completed the survey. We had a balanced mix of services, including roughly equal numbers of charity managed and publicly managed services. Services worked across hospitals, inpatient palliative care units, home care teams and some provided home nursing.
Most services described being overwhelmed by people with COVID-19 while trying to also look after their existing patients. In general, community and hospital palliative care teams had a large surge in patients to care for. 91% of services changed how they worked.
81% of services cared for patients with suspected or confirmed (by test) COVID-19. Three groups of patients dying from and/or with severe symptoms due to COVID-19 were observed:
- patients with underlying conditions and/or multimorbid disease not previously known to palliative care (70% of services);
- patients who were already known to palliative care services (47% of services); and
- patients, previously healthy, now dying from COVID-19 (37% of services).
More than three-quarters of services reported having staff with suspected or confirmed COVID-19. Staff described increased workload, concerns for their colleagues who were ill while spending time struggling to get essential equipment and medicines, and worrying about the financial viability of their service. Major challenges included shortages of: Personal Protective Equipment (PPE) (48%); staff (40%); medicines (24%); and other equipment (14%). Charity managed services were more likely to experience shortages of PPE compared to publicly managed services. Services in the UK were more likely to experience staff shortages compared with those in the rest of Europe or elsewhere in the world.
Preliminary findings
During Work Package 2, 29 services collected data on 642 COVID-19 patients seen and treated by palliative care services. Data collection was closed on 19 February 2021. Analysis is underway to explore:
- Symptom prevalence, trajectories and their relationship to patient characteristics, in particular patients identifying subgroups, e.g. those who are seriously ill or dying from COVID-19, and patients who had multiple co-morbidities or advanced disease who have COVID-19 as well as their existing conditions.
- Treatments used for different symptoms, baseline and changes in symptom severity (IPOS subscales and individual items).
- Symptom management effects (as assessed by the relationship between IPOS score changes and particular treatments, for different symptoms) and characteristics associated with different trajectories and outcomes.
Interim analysis has shown that palliative care has improved patient-reported outcomes for COVID-19 patients seen and treated by the palliative care services during the pandemic. Some of these patients were known to the services, some were unknown but living with multiple long-term conditions and some were not known.
Impact
The following activities have been carried out to feed the research findings into policy decisions:
- Project ECHO run by Hospice UK: We presented four times and also addressed follow-up questions in all weekly sessions since April-August 2020 and attended the quarterly sessions from September 2020 onwards.
- European Association of Palliative Care (EAPC): We contributed to blogs for international engagement with services and stakeholders:
- ‘What’s the role of palliative care and hospices in the COVID-19 pandemic? Evidence from a systematic review’ (https://eapcnet.wordpress.com/2020/04/27/whats-the-role-of-palliative-care-and-hospices-in-the-covid-19-pandemic-evidence-from-a-systematic-review/) (April 2020)
- ‘CovPall: A new study of the palliative care response to COVID-19’ (https://eapcnet.wordpress.com/2020/05/20/covpall-a-new-study-of-the-palliative-care-response-to-covid-19/) (May 2020).
- We have prepared three EAPC blogs on our papers for publication in February/March 2021. The first and second are published: (https://eapcnet.wordpress.com/2021/02/01/how-specialist-palliative-care-services-across-the-world-innovated-frugally-in-response-to-covid-19/) (February 2021), (https://eapcnet.wordpress.com/2021/02/17/understanding-and-addressing-challenges-for-advance-care-planning-in-the-covid-19-pandemic/) (February 2021).
- We presented at the National NIHR Applied Research Collaboration Palliative and End of Life Care Collaboration meetings/workshops on 4 August and 21 September 2020.
- Produced 3 policy briefs.
- Submitted papers for journal publication to maximise impact (one published in the Journal of Pain and Symptom Management, one accepted in Palliative Medicine and one undergoing peer review).
- Contributing to NHS Improvement and London Clinical Networks state of play report that synthesizes palliative and end of life care delivered during the pandemic.
- Presented at Lancaster University Public Lecture Series on 3 December 2020.
- Presented at virtual University of Hull Open Seminar.
- Cicely Saunders International Annual lecture, November 2020.
- Findings included in the Cicely Saunders International Action Plan for Better Palliative Care published in January 2021.
- Presented at the Virtual Supportive & Palliative Care Research Showcase organised by NIHR CRN West Midlands, 23 February 2021.
- UK Parliament: Submitted our research to their Areas of Research Interest.
- National Audit of Care at the End of Life (NACEL) steering group meeting 1 December 2020 (20+ stakeholders).
- We have worked closely with NHS Improvement London, in the preparation of “State-of-Play Report: Palliative Care Delivered During COVID-19”.
Related CovPall Projects
This project has led to three additional projects which aim to improve and boost findings in key areas within palliative care during the COVID-19 pandemic. These key areas are the response of care homes (CovPall Care Homes), national data linkage (CovPall Connect), and rehabilitation (CovPall Rehab).
Effective start/end date: 20/04/2020 - 19/04/2021
Work Package 1: A cross-sectional online survey of palliative care services & hospices
We asked the clinical lead or a delegate from hospices & palliative care services (adult & children, all settings, voluntary hospices, inpatient, home care, hospital palliative care teams) to answer an online survey. The survey asks about their practices and how these have changed, and their challenges and innovations. The survey should take less than 30 minutes to complete. After completing WP1, services who have indicated interest will be invited to take part in WP2. WP1 closed on 31 July 2020.
Work Package 2: A multicentre cohort study of COVID-19 patients seen and treated by palliative care services
Services collected pseudonymised information from the clinical records of around 10 patients with COVID-19 receiving palliative care input retrospectively, or where possible prospectively, at four time points, at first assessment in palliative care, in around two subsequent time points and at death or discharge (D or Di). Information collected included the patient’s sociodemographic data, co-morbidities, symptoms, current medications given and others. It takes approximately five minutes to collect this information per patient. WP2 closed on 19 February 2021.
Publications
Oluyase O, Bajwah S, Sleeman K, Walshe C, Preston N, Hocaoglu M, Bradshaw A, Chambers R, Murtagh F, Dunleavy L, Maddocks M, Fraser L, Higginson J. (2022). Symptom management in people dying with COVID-19: multinational observational study (CovPall). BMJ Supportive & Palliative Care.
Higginson IJ, Hocaoglu M, Fraser LK, Maddocks M, Sleeman KE, Oluyase AO, Chambers RL, Preston N, Dunleavy L, Bradshaw A, Bajwah S, Murtagh FEM, Walshe C; CovPall study team (2022). Symptom control and survival for people severely ill with COVID: a multicentre cohort study (CovPall-Symptom). Journal of Pain and Symptom Management.
https://www.jpsmjournal.com/article/S0885-3924(22)00785-0/fulltext
Bradshaw A, Dunleavy L, Garner I, Preston N, Bajwah S, Cripps R, Fraser LK, Maddocks M, Hocaoglu M, Murtagh FEM, Oluyase AO, Sleeman KE, Higginson IJ, Walshe C (2022). Experiences of staff providing specialist palliative care during COVID-19: a multiple qualitative case study. Journal of the Royal Society of Medicine.
https://journals.sagepub.com/doi/full/10.1177/01410768221077366
Sleeman, K. E., Cripps, R. L., Murtagh, F. E., Oluyase, A. O., Hocaoglu, M. B., Maddocks, M., Walshe, C., Preston, N., Dunleavy, L., Bradshaw, A., Bajwah, S., Higginson, I. J. & Fraser, L. K. (2021). Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall). Journal of Palliative Medicine. https://www.liebertpub.com/doi/10.1089/jpm.2021.0315
Bayly J, Bradshaw A, Fettes L, Omarjee M, Talbot-Rice H, Walshe C, Sleeman KE, Bajwah S, Dunleavy L, Hocaoglu M, Oluyase O, Garner I, Cripps RL, Preston N, Fraser LK, Murtagh FE, Higginson IJ, Maddocks M. (2021). Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data. Palliative Medicine. https://journals.sagepub.com/doi/10.1177/02692163211063397
Oluyase AO, Hocaoglu M, Cripps RL, Maddocks M, Walshe C, Fraser LK, Preston N, Dunleavy L, Bradshaw A, Murtagh FEM, Bajwah S, Sleeman KE, Higginson IJ (2021). The challenges of caring for people dying from COVID-19: a multinational, observational study (CovPall). J Pain Symptom Manage.
https://www.jpsmjournal.com/article/S0885-3924(21)00159-7/fulltext
Dunleavy L, Preston N, Bajwah S, Bradshaw A, Cripps R, Fraser LK, Maddocks M, Hocaoglu M, Murtagh FEM, Oluyase AO, Sleeman K, Higginson IJ, Walshe C (2021). ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall). Palliative Medicine, 35 (5), 814-829. https://journals.sagepub.com/doi/full/10.1177/02692163211000660
Bradshaw A, Dunleavy L, Walshe C, Preston N, Cripps R, Hocaoglu M, Bajwah S, Maddocks M, Oluyase AO, Sleeman K, Higginson IJ, Fraser LK, Murtagh FEM (2021). 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. Palliative Medicine, (35 (7), 1225-1237
https://journals.sagepub.com/doi/10.1177/02692163211017387?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed
Walshe C, Garner I, Dunleavy L, Preston N, Bradshaw A, Cripps RL, Bajwah S, Sleeman KE, Hocaoglu M, Maddocks M, Murtagh FEM, Oluyase AO, Fraser LK, Higginson IJ (2021). Prohibit, protect, or adapt? The changing role of volunteers in palliative and hospice care services during the COVID-19 pandemic. A multinational survey (CovPall). International Journal of Health Policy and Management.
https://www.ijhpm.com/?_action=articleInfo&article=4132&lang
Sleeman KE, Murtagh FEM, Kumar R, O’Donnell S, Cripps RL, Bone A, McAleese J, Lovick R, Barclay S, Higginson IJ. (King’s College London, Cicely Saunders Institute; Hull York Medical School, University of Hull; and University of Cambridge, UK). Better End of Life 2021. Dying, death and bereavement during Covid-19. Research report. London (UK): Marie Curie. 2021 April. https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/2021/better-end-of-life-research-report.pdf
Bajwah S, Koffman J, Hussain J, Bradshaw A, Hocaoglu MB, Fraser LK, Oluyase A, Allwin C, Dunleavy L, Preston N, Cripps R, Maddocks M, Sleeman KE, Higginson IJ, Walshe C, Murtagh FEM (2021). Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable—an observational study. BMJ Supportive & Palliative Care. https://spcare.bmj.com/content/early/2021/09/10/bmjspcare-2021-003083.long
Conferences
EAPC Conference
Findings from the first part of this project were presented as oral presentations at the 11th European Association of Palliative Care World Research Congress (October 2020).
Please see Professor Irene J. Higginson’s oral presentation on “Role and responses of palliative care during the COVID-19 pandemic and beyond”
https://www.youtube.com/watch?v=NXsfB7jw8tU&list=PLBKtt82NusjCDutufv3EAoASvSmismmH2&index=1
Please see Professor Catherine Walshe’s oral presentation on “Protect or prohibit? The role of volunteers in palliative and hospice care services during the COVID-19 pandemic. An international survey (CovPall)”.
https://www.youtube.com/watch?v=CJ-PXRkStXo&list=PLBKtt82NusjCDutufv3EAoASvSmismmH2&index=6
We also presented one poster in a poster discussion session and three posters.
Effective start/end date: 20/04/2020 - 19/04/2021
Work Package 1: A cross-sectional online survey of palliative care services & hospices
We asked the clinical lead or a delegate from hospices & palliative care services (adult & children, all settings, voluntary hospices, inpatient, home care, hospital palliative care teams) to answer an online survey. The survey asks about their practices and how these have changed, and their challenges and innovations. The survey should take less than 30 minutes to complete. After completing WP1, services who have indicated interest will be invited to take part in WP2. WP1 closed on 31 July 2020.
Work Package 2: A multicentre cohort study of COVID-19 patients seen and treated by palliative care services
Services collected pseudonymised information from the clinical records of around 10 patients with COVID-19 receiving palliative care input retrospectively, or where possible prospectively, at four time points, at first assessment in palliative care, in around two subsequent time points and at death or discharge (D or Di). Information collected included the patient’s sociodemographic data, co-morbidities, symptoms, current medications given and others. It takes approximately five minutes to collect this information per patient. WP2 closed on 19 February 2021.
Publications
Oluyase O, Bajwah S, Sleeman K, Walshe C, Preston N, Hocaoglu M, Bradshaw A, Chambers R, Murtagh F, Dunleavy L, Maddocks M, Fraser L, Higginson J. (2022). Symptom management in people dying with COVID-19: multinational observational study (CovPall). BMJ Supportive & Palliative Care.
Higginson IJ, Hocaoglu M, Fraser LK, Maddocks M, Sleeman KE, Oluyase AO, Chambers RL, Preston N, Dunleavy L, Bradshaw A, Bajwah S, Murtagh FEM, Walshe C; CovPall study team (2022). Symptom control and survival for people severely ill with COVID: a multicentre cohort study (CovPall-Symptom). Journal of Pain and Symptom Management.
https://www.jpsmjournal.com/article/S0885-3924(22)00785-0/fulltext
Bradshaw A, Dunleavy L, Garner I, Preston N, Bajwah S, Cripps R, Fraser LK, Maddocks M, Hocaoglu M, Murtagh FEM, Oluyase AO, Sleeman KE, Higginson IJ, Walshe C (2022). Experiences of staff providing specialist palliative care during COVID-19: a multiple qualitative case study. Journal of the Royal Society of Medicine.
https://journals.sagepub.com/doi/full/10.1177/01410768221077366
Sleeman, K. E., Cripps, R. L., Murtagh, F. E., Oluyase, A. O., Hocaoglu, M. B., Maddocks, M., Walshe, C., Preston, N., Dunleavy, L., Bradshaw, A., Bajwah, S., Higginson, I. J. & Fraser, L. K. (2021). Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall). Journal of Palliative Medicine. https://www.liebertpub.com/doi/10.1089/jpm.2021.0315
Bayly J, Bradshaw A, Fettes L, Omarjee M, Talbot-Rice H, Walshe C, Sleeman KE, Bajwah S, Dunleavy L, Hocaoglu M, Oluyase O, Garner I, Cripps RL, Preston N, Fraser LK, Murtagh FE, Higginson IJ, Maddocks M. (2021). Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data. Palliative Medicine. https://journals.sagepub.com/doi/10.1177/02692163211063397
Oluyase AO, Hocaoglu M, Cripps RL, Maddocks M, Walshe C, Fraser LK, Preston N, Dunleavy L, Bradshaw A, Murtagh FEM, Bajwah S, Sleeman KE, Higginson IJ (2021). The challenges of caring for people dying from COVID-19: a multinational, observational study (CovPall). J Pain Symptom Manage.
https://www.jpsmjournal.com/article/S0885-3924(21)00159-7/fulltext
Dunleavy L, Preston N, Bajwah S, Bradshaw A, Cripps R, Fraser LK, Maddocks M, Hocaoglu M, Murtagh FEM, Oluyase AO, Sleeman K, Higginson IJ, Walshe C (2021). ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall). Palliative Medicine, 35 (5), 814-829. https://journals.sagepub.com/doi/full/10.1177/02692163211000660
Bradshaw A, Dunleavy L, Walshe C, Preston N, Cripps R, Hocaoglu M, Bajwah S, Maddocks M, Oluyase AO, Sleeman K, Higginson IJ, Fraser LK, Murtagh FEM (2021). 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. Palliative Medicine, (35 (7), 1225-1237
https://journals.sagepub.com/doi/10.1177/02692163211017387?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed
Walshe C, Garner I, Dunleavy L, Preston N, Bradshaw A, Cripps RL, Bajwah S, Sleeman KE, Hocaoglu M, Maddocks M, Murtagh FEM, Oluyase AO, Fraser LK, Higginson IJ (2021). Prohibit, protect, or adapt? The changing role of volunteers in palliative and hospice care services during the COVID-19 pandemic. A multinational survey (CovPall). International Journal of Health Policy and Management.
https://www.ijhpm.com/?_action=articleInfo&article=4132&lang
Sleeman KE, Murtagh FEM, Kumar R, O’Donnell S, Cripps RL, Bone A, McAleese J, Lovick R, Barclay S, Higginson IJ. (King’s College London, Cicely Saunders Institute; Hull York Medical School, University of Hull; and University of Cambridge, UK). Better End of Life 2021. Dying, death and bereavement during Covid-19. Research report. London (UK): Marie Curie. 2021 April. https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/2021/better-end-of-life-research-report.pdf
Bajwah S, Koffman J, Hussain J, Bradshaw A, Hocaoglu MB, Fraser LK, Oluyase A, Allwin C, Dunleavy L, Preston N, Cripps R, Maddocks M, Sleeman KE, Higginson IJ, Walshe C, Murtagh FEM (2021). Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable—an observational study. BMJ Supportive & Palliative Care. https://spcare.bmj.com/content/early/2021/09/10/bmjspcare-2021-003083.long
Conferences
EAPC Conference
Findings from the first part of this project were presented as oral presentations at the 11th European Association of Palliative Care World Research Congress (October 2020).
Please see Professor Irene J. Higginson’s oral presentation on “Role and responses of palliative care during the COVID-19 pandemic and beyond”
https://www.youtube.com/watch?v=NXsfB7jw8tU&list=PLBKtt82NusjCDutufv3EAoASvSmismmH2&index=1
Please see Professor Catherine Walshe’s oral presentation on “Protect or prohibit? The role of volunteers in palliative and hospice care services during the COVID-19 pandemic. An international survey (CovPall)”.
https://www.youtube.com/watch?v=CJ-PXRkStXo&list=PLBKtt82NusjCDutufv3EAoASvSmismmH2&index=6
We also presented one poster in a poster discussion session and three posters.

Principal Investigator
Irene Higginson
Executive Dean, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care
Investigators
Sabrina Bajwah
Clinical Senior Lecturer and Honorary Consultant in Palliative Care
Matthew Maddocks
Professor of Health Services Research & Rehabilitation
Fliss Murtagh
Visiting Professor
Nancy Preston
Affiliate Professor
Katherine Sleeman
Laing Galazka Chair in Palliative Care, Honorary Consultant in Palliative Medicine
Affiliations
Project websites
Funding
Funding Body: Medical Research Council
Amount: £ 280,948
Period: April 2020 - April 2021