However, providing high-quality palliative and end-of-life care in care homes has been particularly challenging during Covid-19. This is because older people with Covid-19 can deteriorate rapidly and unpredictably, because wearing personal protective equipment (PPE) makes communication harder, especially for people with dementia, and because visiting restrictions worsen distress. In addition, care home staff faced challenges in accessing advice from healthcare teams and decision making.

In this study, ARC palliative and end of life care researchers, led by Professor Katherine Sleeman, will build on recent research on supporting residents in care homes at the end of life, to focus on the issues that arise from providing high-quality palliative and end of life care in care homes during a pandemic.

What is the aim of this project?

The aim of this research is to understand the provision of palliative and end of life care in care homes during the Covid-19 pandemic, and to use the findings to make recommendations to key decision-makers that improve care.

How will the project be carried out?

The project is being carried out over two stages. In stage 1, we will survey 400 care homes in England to understand palliative and end of life care provision. We will ask about staff training, experience and wellbeing; use of guidance for symptom control, communication and advance care planning; ways of working with primary care, community services, hospice care and hospital services. We will use our established networks to ensure responses from regions that are diverse socio-economically, ethnically and geographically, and areas most affected by Covid-19. We aim to establish what helped care homes provide high-quality palliative care during the pandemic, and what hindered this.

In stage 2, we will carry out in-depth telephone interviews with care home managers/clinical leads. We estimate 20-24 sites, chosen based on their responses to stage 1. These case studies will explore in more depth the facilitators for high-quality palliative care (such as training, information sharing, virtual visiting) and the challenges (such as shortages of medicines/equipment, lack of integration). We want to understand how to widen and sustain palliative care provision for all residents, during and after the Covid-19 pandemic.

Our collaborators

We are collaborating with Tameside and Glossop Integrated Care NHS Foundation Trust, University of Hertfordshire, University of Cambridge, Association of Directors of Adult Social Services, Care Home Research Network, London South Bank University, The Queen's Nursing Institute, the UK Health Security Agency, and Cicely Saunders International.

This project is funded by the NIHR and is expected to finish in July 2022.