We know there is geographic inequality in people's access to and experience of care at the end of life – but we don't know why. Identifying the causes of this inequality across the UK could help us to provide better end of life care for all.
Reducing inequalities in health and care is a priority for the Office for Health Improvement and Disparities (previously Public Health England) and NHS England, through programmes such as the Core20PLUS5.
There is growing evidence of inequality in the experiences of people who are nearing the end of life. Some of these inequalities have been relatively well described, while others including those relating to ethnicity and geography have not.
We've been aware of socioeconomic inequality in end of life care since the 1990s, when studies first showed that living in a more deprived area meant people were less likely to die at home and more likely to die in hospital. But even though many subsequent studies have shown a similar association, we still understand very little about why that is the case.
Our 2022 Mind the Gaps report found that rates of emergency department attendance increased steeply in the three months before death, and after accounting for differences in age and gender, we found that some areas had more than double the rate of emergency department attendance in the last year of life than other areas.
The report also showed that people who lived in more deprived areas had more out of hours emergency department visits in their last year of life.
What could be causing this variation?
A higher rate of emergency department attendance in the last year of life could reflect poor access to community palliative and end of life care services in some areas. It could also reflect wider geographical variation in health needs and disability, influenced by the age, gender, ethnicity, and wealth of local populations among other factors.
Therefore, to understand why there is variation across areas, we need to consider how service provision and population needs vary as well.
The kind of provision that works in one area wouldn't necessarily work in another. We need to look at each area in its own context.
Services are under unprecedented pressure
This pressure will increase as population ageing leads to a growing need for palliative and end of life care.
The increasing demand for palliative and end of life care services will be felt differently in different areas of the UK. And, inequality in access to these services will vary between areas and change over time as well.
The kind of provision that works in one area wouldn't necessarily work in another. We need to look at each area in its own context.
What should we be doing to understand more about geographical variation?
Currently, we don't know whether the inequality gap in outcomes such as emergency department visits in the last months of life is narrowing or getting wider. Identifying areas with widening or narrowing inequalities, an approach used to understand unplanned hospital admissions, could help us to identify ways to reduce inequalities in palliative and end of life care and to know where to target improvements.
It's also important to understand more about inequalities within areas. For example, variation by neighbourhood, by level of area-based deprivation and by ethnicity within a wider geographical area such as a local authority or an Integrated Care Board (ICB).
Geography is an under-explored element of inequality in palliative and end of life care. But to address geographical inequality we need to apply an intersectional lens – one that considers multiple forms of disadvantage and how they contribute to inequalities between areas.
This work is funded by the Marie Curie Better End of Life Programme (MCSON-20-102) and by the NIHR Programme Grants for Applied Research (NIHR204588). This work uses data assets made available 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) and by Cicely Saunders International. This work was carried out with the support of the British Heart Foundation (BHF) Data Science Centre led by Health Data Research UK (BHF Grant no. SP/19/3/34678) and made use of de-identified data held in NHS England's Secure Data Environment service for England, accessed via the BHF Data Science Centre's CVD-COVID-UK/COVID-IMPACT consortium. This work used data provided by patients and collected by the NHS as part of their care and support. We would also like to acknowledge all data providers who make health relevant data available for research. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Katherine Sleeman 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.
