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THIS IS A TEST!!!

GP talking to a senior woman in the surgery

Better End of Life

LEAD RESEARCHERS

Fliss Murtagh

Professor Fliss Murtagh

Professor in Palliative Care

TIME FRAME

2021 - 2023

FUNDED BY

Marie Curie

COLLABORATORS

King's College London UCL

About this project

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

Publications

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".

Better End of Life 2021: Living conditions and cultural needs towards the end of life: Patient and public reflections on census data for people who died in England and Wales (2021)

Fairer Care at Home: The COVID-19 pandemic: a stress test for palliative and end of life care in England (2022)

Fairer Care at Home: The COVID-19 pandemic: a stress test for palliative and end of life care in Wales (2022)

Fairer Care at Home: The COVID-19 pandemic: a stress test for palliative and end of life care in Scotland (2022)

Fairer Care at Home: The COVID-19 pandemic: a stress test for palliative and end of life care in Northern Ireland (2022)

Better End of Life 2022: Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers (2022) 

Better End of Life 2024: Time to care: Findings from a nationally representative survey of experiences at the end of life in England and Wales (2024)

Living conditions and cultural needs towards the end of life: Patient and public reflections on census data for people who died in England and Wales. (Publication year is unclear, but workshops held between September and October 2023)

Emergency department visits by ambulance for people in the last 12 months of life by Integrated Care Board, for deaths in England in 2019 and 2020. (2022) - Based on the data presented in the 2022 report but for England ICBs and presents 'Rate per 1,000 deaths' for 2019 and 2020, whilst main report focuses on 2020.

Papers

Okamoto I, Pask S, Johansson T, Chambers R, Mohamed A, McFarlane PG, Higginson I, Sleeman KE, Murtagh F, Barclay S. (2025) Challenges to timely access to out-of-hours end-of-life medications: A UK qualitative study. Br J Gen Pract.

Davies JM, Chua KC, Maddocks M, Murtagh FEM & Sleeman KE (2025) Social determinants of where people die: A study of moderators and mediators using linked UK Census and mortality data. SSM Pop Health, 30:101784. - This relates to the report 'Living conditions and cultural needs towards the end of life' but has a different grant number (MC-21-816) to the Better End of Life Programme (MCSON-20-102).

Davies JM, Leniz J, Chua K-C, Williamson L, Bajwah S, Bolton T, Bone AE, Hocaoglu M, Verne J, Fraser LK, Barclay S, Murtagh FEM, Higginson IJ & Sleeman K (2024) Association between ethnicity and emergency department visits in the last three months of life in England: a retrospective population-based study using electronic health records. BMJ Public Health, 2(2):e001121.

Johansson T, Chambers RL, Curtis T, Pask S, Greenley S, Brittain M, Bone AE, Laidlaw L, Okamoto I, Barclay S, Higginson IJ, Murtagh FEM, & Sleeman, KE (2024) The effectiveness of out-of-hours palliative care telephone advice lines: A rapid systematic review. Palliat Med, 38(6), 625-643.

Pask S, Omoruyi A, Mohamed A, Chambers RL, McFarlane PG, Johansson T, Kumar R, Woodhead A, Okamoto I, Barclay S, Higginson IJ, Sleeman KE, & Murtagh, FEM (2024) Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework. Palliative Medicine, 38(5), 555-571.

Chambers RL, Pask S, Higginson IJ, Barclay S, Murtagh FEM & Sleeman KE (2022) Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis. AMRC Open Research, 4(19), 19.

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.

Sleeman KE, Cripps RL, Murtagh FEM, Oluyase AO, Hocaoglu MB, Maddocks M, Walshe C, Preston N, Dunleavy L, Bradshaw A, Bajwah S, Higginson IJ & Fraser LK (2021) Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall). Journal of Palliative Medicine, 25(3).

O’Donnell SB, Bone AE, Finucane AM, McAleese J, Higginson IJ, Barclay S, Sleeman KE & Murtagh FEM (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.

Contact us

We welcome enquiries about our research, or if you are interested in collaborating, visiting or postgraduate study with us.

WolfsonPallCare@hyms.ac.uk

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