Around one-third of deaths in the UK occur at home, a number that increased since the COVID-19 pandemic. Although many people wish to die at home, the reality often differs from the ideal. Family members often report that their loved ones experienced symptoms or distress in the final days of their life. However, patients themselves are rarely able to share their own experiences.
Background
More people with terminal conditions in the UK are dying at home. While dying at home is often idealized as a peaceful, comfortable experience, the reality often contrasts with this ideal. Often bereaved family carers report that their loved ones experienced symptoms or distress in the last week of life, and some observed that their relative were ‘not at peace’ during their final days. However, the patient voice has rarely been heard. The goal of this project is to understand patients’ experiences of dying at home and highlight key areas where improvements can be made in care. By looking at UK-focused studies published over the past 20 years, the project will examine patients’ experiences during their last four months of life and offer new insights by combining findings. The project will help inform healthcare service providers and policymakers in providing person-centred care."
Project Aims
This project aims to:
- Understand personal experiences of adult patients dying at home
- Provide suggestions for improving care for dying patients and their families
Project Activity
We are currently undertaking a detailed literature review of dying patients experiences in the last four months of their life at home. We will look for common themes to better understand what patients experiences and how care may be improved.
Anticipated or actual outputs
- A literature review will provide an in-depth overview of adult patients experiences of dying at home and highlight any gaps in the current evidence base warranting further research.
- We will provide evidence-based suggestions for improving the care and experiences of adults dying at home.
- Our project findings will be shared widely through a focused, brief policy brief for care commissioners and healthcare service providers.
Who is involved?
- Co-PI Joodi Mourhli, University of Cambridge, Research Assistant
- Co-PI Dr Ben Bowers, University of Cambridge, ARC Deputy Theme Lead for Palliative and End of Life Care
- Krzysztof Sosnowski, University of Cambridge
- Riddhiman Ghosh, University of Cambridge
- Helen Cai, University of Cambridge
- Isla Kuhn, University of Cambridge
- Dr Lucy Pocock, University of Bristol
