Our research examines current palliative and end of life care practices in community and primary care, and we are developing innovative ways to improve service delivery across health and social care. We focus particularly on investigating better ways of working to deliver effective and timely care for people dying at home, including improving end-of-life symptom control.
Projects in this area include:
Using injectable end-of-life symptom control medications at home: understanding human and system factors through inclusive design
Researchers: Dr Ben Bowers, Dr Rosanna Fennessy, Dr Sioned Gwyn (Swansea University), Prof. Andrew Carson-Stevens (Cardiff University), Prof. Kristian Pollock (University of Nottingham), Prof. John Clarkson (Department of Engineering, University of Cambridge), Prof. Stephen Barclay.
Funder: Wellcome Trust Early Career Award [Ben Bowers]. NIHR ARC Affiliated Study https://wellcome.org/grant-funding/people-and-projects/grants-awarded/using-injectable-end-life-symptom-control
This interdisciplinary project seeks to understand the human and system factors involved in the safe, effective and timely use of injectable end-of-life symptom control medications for adults dying at home. We are advancing an inclusive design research methodology and identify with stakeholders where and how systems for using injectable medications can be improved.
Methods: Drawing on engineering, patient safety and social science disciplines, we will use innovative systems-driven inclusive design methods to examine the human and system factors involved in the use of injectable end-of-life medications; where and how this complex adaptive system can be improved will be investigated through three sequential 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.
Analysis (Stage 1) and fieldwork (Stage 2) are currently underway.
Mapping patient and carer experiences with injectable anticipatory medications: Identifying opportunities for improvement.
Researchers: Dr Rosanna Fennessy, Artemis Paterson, Dr James Ward (Department of Engineering), Prof. John Clarkson (Department of Engineering), Dr Ben Bowers
Funder: Wellcome Trust Early Career Award [Ben Bowers]
This innovative project uses journey mapping techniques from systems engineering to explore experiences of navigating the prescribing and use of anticipatory injectable medications. These medications are used by health professionals in the community to control distressing end of life symptoms such as pain and breathlessness. Using data from 23 interviews we are mapping where experiences of patients and carers differed from the intended pathway of these medications, highlighting areas for improvement.
The research is currently being written up for publication.
Stakeholder needs concerning injectable end-of-life symptom control medication
Researchers: Binu Perera and Dr Ben Bowers
Funder: Wellcome Trust Early Career Award [Ben Bowers]
Injectable medications, including opioids and sedatives, are frequently prescribed weeks or months in advance of anticipated need for patients with terminal conditions and stored in the home. Critically, we do not adequately understand different stakeholders’ needs and priorities regarding this practice.
The proposed study will explore and compare different stakeholders' needs and priorities in systems in prescribing and using injectable medications in the community. We are using a simple and effective engineering design technique called a stakeholder needs assessment, completed via an online survey. 440 members of the public and health and social care practitioners have recently taken part.
The research is currently in the analysis stage.
General Practitioners’ perspectives on their current and future role in palliative and end of life care: a UK–wide qualitative study
Researchers: tbc, Dr Allison Bentley, Dr Sarah Mitchell (University of Leeds), Prof. Stephen Barclay and Dr Ben Bowers.
Funder: NIHR Applied Research Collaboration East of England
General Practitioners (GPs), along with community nurses and wider palliative care teams provide most of the clinical care for patients who die in the community. Demand for care is increasing as more people die at home, but consensus over GPs’ roles and responsibilities in end-of-life care is absent. The research aims to gain new knowledge and in-depth understanding of the future role of GPs in palliative and end of life care to best inform whole-system service design and workforce development. We are purposively sampling and interviewing up to 25 GPs from across the UK.
Fieldwork is currently underway.
Community nurses’ experiences of their new and extended roles in end-of-life care
Researchers: Dr Ben Bowers, Dr Louisa Polak, Dr Simon Etkind, Prof. Kristian Pollock (University of Nottingham), Dr Simon Etkind, Prof. Alison Leary (London South Bank University), Prof. Stephen Barclay.
Funder: General Nursing Council Trust
This multi-methods research study explores community nurses’ views and experiences of their new and extended roles in palliative and end-of-life care since the Covid-19 pandemic. An online survey of 51 UK-based community nurses was followed by focus group interviews with 35 survey participants in 2023.
The research is currently being written up for publication.
End of life prescribing in Parkinson’s disease and Lewy body dementia: a systematic review and narrative synthesis
Researchers: Dr Allison Bentley, Dr Caroline Barry (University of East Anglia), Isla Kuhn, Dr Ben Bowers and Prof. Stephen Barclay.
Funder: NIHR Applied Research Collaboration East of England
Parkinson’s disease is a complex neurological condition commonly affecting older people. Prescribing for Parkinson’s conditions can be particularly challenging at end of life. This is because some antiemetics commonly prescribed at the end of life are contraindicated in Parkinsons disease and Lewy body dementia. The systematic review objective is to explore the current extent and type of evidence in relation to end-of-life symptom control prescribing practices around nausea and vomiting for people with Parkinson’s disease and Lewy body dementia. We will synthesise the published evidence and identify where further research is needed.
PROSPERO details: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=560692
The review is currently underway.
Relevant papers
Bowers B, Pollock K, Barclay S. Administration of end-of-life drugs by family caregivers during covid-19 pandemic. British Medical Journal 2020; 369: m1615 https://www.bmj.com/content/369/bmj.m1615
Bowers B, Pollock K, Wilkerson I, Massou E, Brimicombe J, Barclay S. Administering injectable medications prescribed in the anticipation of the end of life in the community: A mixed-methods observational study. International Journal of Nursing Studies 2024. Available Online First
Bowers B, Antunes BCP, Etkind S, Hopkins S, Winterburn I, Kuhn I, Pollock K, Barclay S. Anticipatory prescribing in community end-of-life care: systematic review and narrative synthesis of the evidence since 2017. BMJ Supportive & Palliative Care 2023. Online First: 26 May 2023
Bowers B, Pollock K, Barclay S. Simultaneously reassuring and unsettling: a longitudinal qualitative study of community anticipatory medication prescribing for older patients. Age and Ageing 2022. 51(12): afac293. Online First: 8 December
Bowers B, Pollock K, Barclay S. Unwelcome memento mori or best clinical practice? Community end-of-life anticipatory medication prescribing practice: a mixed methods observational study. Palliative Medicine 2022; 36(1): 95-104