Although most people recover from Covid-19 even after very serious illness, unfortunately some become very ill with very severe symptoms, and sadly some people die. Palliative care services and hospices have rapidly changed how they work to support people in many settings – caring for severely ill patients who don’t have Covid-19, as well as those with it.
In addition, as Covid-19 is a new disease, the response has been complicated as the symptoms that people experience, and the best treatments for them, are not well understood. There is therefore an urgent need to understand how palliative and end of life care services have responded to Covid-19, to improve our response and help in the future.
The CovPall project aims to explore how palliative care and hospice services have changed how they work, the challenges they have faced, and their innovations (known as Work Package 1 (WP1)). As part of this, we want to identify any unequal access to care across settings, including care homes. We also want to know what symptoms and problems patients have, how they change over time, and what treatments and therapies work best (known as Work Package 1 (WP1)).
We are working with palliative care services in south London, including services for adults and children, voluntary hospices, home care, and hospitals. In WP1, we have asked the clinical lead at hospices and palliative care services to complete a survey. In WP2, services have collected pseudonymised information from the clinical records of a selection of patients with Covid-19 receiving palliative care input retrospectively, or where possible prospectively, at four points in time: at their first assessment in palliative care; at two subsequent time points; and at death or discharge. We will collect information on each patient’s sociodemographic data, co-morbidities, symptoms, and medications.
The CovPall project was developed in response to a consultation with our patient and public involvement and engagement network. We received more than 40 responses via telephone, email and our online forum (www.csipublicinvolvement.co.uk). Respondents raised concerns in relation to increased symptom burden, use of advance care plans, how care might be ‘rationed’ and the possibility of compromised end of life care as a result of the pandemic. These concerns directly informed our plans for this research project.
As well as working closely with services in south London, we are working with the European Association for Palliative Care, Marie Curie, Together for Short Lives, Sue Ryder, Hospice UK and the Scottish Partnership for Palliative Care. We are also collaborating with Hull York Medical School, University of York, and Lancaster University.
The project started in April 2020 and will finish in April 2021. It is being led by researchers at the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation.
The CovPall project has been selected by Health Data Research UK as one of the twelve projects to accelerate use of data for vital Covid-19 research. The new study CovPall-Connect will explore the relationship between regional Covid-19 palliative care responses and Covid-19 prevalence, mortality, admissions, discharges, business and social impacts with datasets from across the UK. Read more.
