Strengthening end‑of‑life care at home by identifying the human and system factors that enable the safe, effective and timely use of injectable symptom‑control medications, reducing avoidable suffering and supporting high‑quality care for people who wish to die at home.
Why is the research needed?
Many people prefer to be cared for at home at the end of their life. To support this, healthcare services often arrange for injectable medications to be available in the home so symptoms can be managed quickly when they arise. This is a complex intervention, and if these medications cannot be given when needed, avoidable suffering can occur.
A clearer understanding is needed of the human and system factors that influence the safe, effective and timely use of injectable end‑of‑life symptom‑control medications at home. This includes understanding what currently works well, what needs to improve, and how the different parts of the system interact to deliver high‑quality end‑of‑life care for people at home.
What are we doing?
Drawing on engineering, patient safety and social science disciplines, we are using innovative inclusive design methods to examine the human and system factors involved in the use of injectable end-of-life medications. We are especially interested in where and how this complex adaptive system can be improved. Our work has three stages:
- Stage 1: Mixed-methods analysis of reported patient safety incidents occurring in England and Wales using the National Reporting and Learning System (NRLS) database.
- Stage 2: Longitudinal patient-centred case studies exploring the views, experiences and interactions of patients prescribed medications, their family caregivers and clinicians.
- Stage 3: Stakeholder focus groups with patients, family caregivers and healthcare teams exploring key issues, generating further knowledge of systems for using medications and how these can be improved.
How are we working with communities, services and organisations?
Involving communities, services and organisations in our research is a central part of our work. From the outset, our research has been shaped, guided and enriched by patient and public involvement, including the perspectives of people with lived experience of the system we are studying. We work in partnership with our Wellcome Public and Clinician Advisory Group, and we also co-ordinate closely with clinical teams and research partners in healthcare trusts, primary care organisations and academic departments.
Our research includes as many diverse perspectives as we can: those of patients, family caregivers, community nurses, ambulance clinicians, GPs, pharmacists, triage professionals, palliative care specialists and administrative staff. We have had some overwhelming responses from participants, indicating that this is a subject that people care very strongly about.
We are building long-term partnerships with communities, services and organisations across the UK and beyond, so that we can continue to produce world-leading research together.
What will the impact and benefits of this research be?
This research is creating new, in-depth knowledge of the human and system factors involved in the safe, effective and timely use of injectable end-of-life symptom control medications for adults who are dying at home. Our research shows what is working well and priority areas for improving practice. This will allow service providers and commissioners to understand how to provide timely, safe and effective symptom control for people at home.
We are also identifying the wider challenges that healthcare teams face while delivering this essential care. Our work is identifying feasible ways in which we can improve the experiences of patients, family caregivers and clinicians through providing high-quality end-of-life care at home.
What do we have planned for knowledge mobilisation and implementation?
From the beginning of this research, we have planned ways to communicate and share our knowledge and have public conversations about end-of-life symptom management. We are informing people about the issues, generating interest in the study, and creating a knowledge-sharing community of practice.
Our results are being shared in scientific publications, at conferences, and through targeted online briefings and videos for clinicians, policymakers and researchers. We are sharing our findings and their implications for policy and practice with specialists at training courses (such as the Oxford Advanced Pain and Symptom Management Course) as well as with national policymakers and clinicians in primary and community care.
As our research progresses, we are also creating an online evidence repository to help healthcare teams and policymakers.
Related papers, outputs and resources
Read the related paper, titled 'What happens if we do not talk about death and dying?'
View the funders page here Wellcome Early Careers Award Project (Dr Ben Bowers)
Who is involved?
- Principal Investigator: Dr Ben Bowers, University of Cambridge & Cambridgeshire and Peterborough NHS Foundation Trust
- Dr Ben Daley, University of Cambridge
- Dr Louisa Polak, University of Cambridge
- Professor Stephen Barclay, University of Cambridge
- Professor Kristian Pollock, University of Nottingham
- Professor Andrew Carson-Stevens, Cardiff University
- Joodi Mourhli, University of Cambridge
- Dr Rosanna Fennessy, University of Cambridge
- Dr Swapnil Ghotane, University of Cambridge
- Dr Sioned Gwyn, Swansea University
- Dr Isabel Hope, Cardiff University
- Dr Joy McFadzean, Cardiff University
- Dr Sarah Yardley, University College London
- Dr Dylan Pritchard, Cardiff University
- Maya Harhi, University of Cambridge
- Professor James Ward, University of Cambridge
- Professor John Clarkson, University of Cambridge
Get in contact
Email Dr Ben Bowers at bb527@cam.ac.uk.
Funded by Wellcome Trust Early Career Award [Ben Bowers]. NIHR Applied Research Collaboration Affiliated Study.
