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.
- 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).
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.
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.
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).
Funding Body: Medical Research Council
Amount: £ 280,948
Period: April 2020 - April 2021