Everyone affected by dying, death and bereavement deserves the best possible experience. Sadly, many people experience poor care and support in the last stages of life and in bereavement. Although care inequalities for people affected by death, dying and bereavement are common, these are rarely policy priorities.Our project aims to understand the experiences of people affected by death, dying and bereavement in the UK today. We will do this by gathering new evidence and identifying and summarising existing data.
We will frame the findings in a way that compels policy makers to take action.
Three workstreams carried out in parallel, over three years:
- Workstream 1: We want to know what is the quality of care and support experienced by individuals affected by death, dying and bereavement in the UK? We will generate new data through a large survey of bereaved relatives and carers. We want to understand patients’ symptoms and concerns in the last weeks of life, including pain, breathlessness, and anxiety. We will also explore carers’ grief intensity.
- Workstream 2: We want to know what care and services are available, and which are most effective? We will map availability of care and services to identify gaps and inequalities. We will review and summarise evidence to identify the most effective ways to deliver services.
- Workstream 3: We will measure the quality of death, dying and bereavement care, using metrics developed nationally, to understand the quality of care for populations, and understand differences between regions.
Communication of results
A public and policy engagement programme will run alongside the research. We will organise workshops with members of the public to gauge public opinion and explore priorities; round-table discussions with senior decision makers to engage with the research and explore policy priorities; media and public engagement activities to raise societal awareness and spark a national conversation; evidence summaries and data specific to UK regions to promote local and national policy engagement.
The three workstreams (WS) will run in parallel.
The project is underpinned by the theoretical framework of Donabedian, using the three-component approach to evaluate quality of care:
- Outcomes - what is the quality of care for individuals/families? (WS1, WS3)
- Processes - how is care is provided and received? (WS1, WS2, WS3)
- Structures - what care is available (but not necessarily accessed)? (WS2, WS3)
- Workstream 1. Post-bereavement (mortality follow-back) survey of bereaved carers
- Workstream 2. Mapping of care and services
- Workstream 3. Identification, synthesis and analysis of metrics
Peer review publications and briefings for policy makers
Who is involved?
- Katherine Sleeman, KCL London
- Irene Higginson, KCL London
- Rashmi Kumar, KCL London
- Stephen Barclay, University of Cambridge
- Fliss Murtagh, Hull York Medical School
- Leniz J, Davies J, Bone A, Hocaoglu M, Verne J, Barclay S, Murtagh F, Fraser L, Higginson I, Sleeman K (2023). “Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: an analysis of mortality data across four nations”. Palliative Medicine; in press
- Chambers R, Pask S, Higginson I, Barclay S, Murtagh F, Sleeman K (2022). “Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis”. AMRC Open Research; 4 :19 doi.org/10.12688/amrcopenres.13079.1
- O’Donnell S, Bone A, Finucaine A, McAleese J, Higginson I, Barclay S, Sleeman K, Murtagh F (August 2021) “Changes in mortality patterns and place of death during the COVID-19 pandemic: A retrospective analysis of mortality data” Palliative Medicine; 35(10): 1975 – 1984 doi:10.1177/02692163211040981
Stephen Barclay, University of Cambridge