Deaths at home increased the most in the least deprived areas during the COVID-19 pandemic, new research has found.
The reports published today from the Better End of Life research programme provide the first evidence that the increase in deaths at home across the UK that occurred during the pandemic was accompanied by a widening of socioeconomic inequality. These new findings highlight the need for investment in palliative care and community services to reduce inequalities in end-of-life care, especially in more deprived areas.
Better End of Life is a collaboration between King's College London's Cicely Saunders Institute, Hull York Medical School at the University of Hull, the University of Cambridge's Primary Care Unit and Marie Curie. The programme examines evidence on the current state of dying, death and bereavement across the four nations of the UK and proposes a policy agenda aimed at helping to ensure that everyone has the best possible end-of-life experience.
This is the first comprehensive analysis of the impact of the COVID-19 pandemic on socioeconomic inequalities in place of death across the UK. The report highlights deaths at home increased during the pandemic across all socio-economic groups, but the increase was highest among those living in less deprived areas and smallest in the most deprived areas. The researchers suggest that people in the most deprived areas may not always have had the necessary resources, such as appropriate housing, social support, financial security, primary care and community services, to support death at home.
We know that many people would prefer to die at home, surrounded by loved ones and supported by community care. However, our research shows that there was a larger increase in deaths at home in less deprived areas during the COVID-19 pandemic. Everyone approaching the end of their life, regardless of socioeconomic background, should have the care and support they need, in the place of their choosing. It is imperative we learn from the weaknesses in care that have been exposed by the pandemic to improve end-of-life care for all who need it. In light of the projected increase in palliative care needs across the UK over the next 20 years, investment in primary care, community care, and palliative care services is urgently needed. – Professor Katherine Sleeman, Laing Galazka Chair in palliative care at the Cicely Saunders Institute, King's College London, and Better End of Life programme Chief Investigator
Ruth Driscoll, Associate Director for Policy and Public Affairs at the end-of-life charity Marie Curie, said: "This is a critical moment for palliative and end-of-life care. Each nation of the UK must respond to this research and wider evidence of health inequalities during the COVID-19 pandemic. Leaders must ensure that the needs of dying people in our poorest communities are prioritised in their health and care plans. Good quality end-of-life care must be urgently made available for all people in all settings, including in people's own homes."
Professor Fliss Murtagh, Professor of Palliative Care and Associate Director of the Wolfson Palliative Care Centre, Hull York Medical School, University of Hull, and co-researcher, said "Home deaths increased substantially during the pandemic, almost certainly in some part due to pressures on acute hospital services, and restrictions on hospital visiting for families. But the increase in home deaths was not the same for everyone; those in the least deprived areas saw the largest increase. It is important to understand why this occurred and ensure gaps in care are addressed, equitably for all."
Professor Stephen Barclay, Professor of Palliative Care at the University of Cambridge, GP and Honorary Consultant in Palliative Care and co-researcher, said: "This new research highlights the central role of GPs and Community Nurses in the provision of End of Life Care at home and in care homes, working alongside their colleagues in social care and specialist palliative care teams".
This research was funded by Marie Curie and carried out by an Expert Group made up of clinical academics in palliative medicine and primary care from King's College London, Hull York Medical School at the University of Hull, and the University of Cambridge, as well as other researchers with both clinical and non-clinical backgrounds.
The Group's work was shaped and informed by a Patient and Public Involvement Reference Group. It is the insights from these individuals and informal carers which lie at the centre of the research findings and policy recommendations.
Better End of Life Reports
Funding information
The Better End of Life Programme is funded by Marie Curie, grant [MCSON-20-102].
This report used data assets made available by the Office for National Statistics as part of the Data and Connectivity National Core Study, led by Health Data Research UK in partnership with the Office for National Statistics and funded by UK Research and Innovation (CovPall-Connect study, grant ref MC_PC_20029; HDRUK2020.145, Principal Investigator Professor Irene J Higginson).
This work was produced using statistical data from ONS. The use of the ONS statistical data in this work does not imply the endorsement of the ONS in relation to the interpretation or analysis of the statistical data. This work uses research datasets which may not exactly reproduce National Statistics aggregates.
This report used data assets made available by Scottish National Safe Haven as part of the Data and Connectivity National Core Study, led by Health Data Research UK in partnership with the Office for National Statistics and funded by UK Research and Innovation (CovPall-Connect study, grant ref MC_PC_20029; HDRUK2020.145, Principal Investigator Professor Irene J Higginson).
The authors would like to acknowledge the support of the eDRIS Team (Public Health Scotland) for their involvement in obtaining approvals, provisioning and linking data and the use of the secure analytical platform within the National Safe Haven.
This report used data assets made available by the Northern Ireland Honest Broker Service as part of the Data and Connectivity National Core Study, led by Health Data Research UK in partnership with the Office for National Statistics and funded by UK Research and Innovation (CovPall-Connect study, grant ref MC_PC_20029; HDRUK2020.145, Principal Investigator Professor Irene J Higginson).
The authors would like to acknowledge the help provided by the staff of the Honest Broker Service (HBS) within the Business Services Organisation Northern Ireland (BSO). The HBS is funded by the BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.
KES is the Laing Galazka Chair in palliative care at King's College London, funded by an endowment from Cicely Saunders International and the Kirby Laing Foundation. IJH is an NIHR Senior Investigator Emeritus. FEMM is a National Institute for Health Research (NIHR) Senior Investigator. IJH and SB are supported by the NIHR Applied Research Collaboration (ARC) South London (SL) and NIHR ARC East of England respectively. The views expressed in the report are those of the authors and not necessarily those of the NIHR, or the Department of Health and Social Care.
