This project aims to understand the outcomes and experiences of people affected by death, dying, and bereavement in the UK by generating, retrieving, and synthesising evidence, and to frame this evidence in a format that compels policy-makers to take action.
This project is conducted jointly between the Wolfson Palliative Care Research Centre and colleagues at King’s College London and University of Cambridge.
Methods
This project has three workstreams, including a cross-sectional survey of bereaved relatives and carers in the UK, mapping available care and services to identify inequalities and gaps and analysis of routinely collected data.
- Workstream 1
We want to know what the quality of care and support experienced by individuals affected by death, dying and bereavement in the UK is. 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 the 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.
Outputs
Findings from the Fairer Care at Home report were included in an article written by Michael Simmons for The Spectator entitled "As the NHS shut down, the wealthy chose to die at home".
Sleeman KE, Leniz J, Davies JM, Bone AE, Pask S, Chambers RL, Kumar R, Fraser LK, Hocaoglu MB, Oluyase AO, Barclay S, Murtagh FEM & Higginson IJ (King’s College London, Cicely Saunders Institute; Hull York Medical School at the University of Hull; and University of Cambridge, UK). Better End of Life 2022. Fairer Care at Home. The Covid-19 pandemic: a stress test for palliative and end of life care. Research report. London (UK): Marie Curie. 14 July 2022.
Sleeman, K.E., Murtagh, F.E.M., Kumar, R., O’Donnell, S., Cripps, R.L., Bone, A., McAleese, J., Lovick, R., Barclay, S. & Higginson, I.J. (King’s College London, Cicely Saunders Institute; Hull York Medical School, University of Hull; and University of Cambridge, UK). Better End of Life 2021. Dying, death and bereavement during Covid-19. Research report. London (UK): Marie Curie. 2021 April.
O’Donnell, S.B., Bone, A.E., Finucane, A.M., McAleese, J., Higginson, I.J., Barclay, S., Sleeman K.E. & Murtagh, F.E.M. (2021). Changes in mortality patterns and place of death during the COVID-19 pandemic: a descriptive analysis of mortality data across four nations. Palliative medicine 35 (10), 1975-1984.