Estimates of population-level palliative care needs in the UK: A descriptive analysis of mortality data before and during the COVID-19 pandemic

Abstract

Background: Existing estimates of palliative care need in the UK were produced before the COVID-19 pandemic. We aim to produce updated, population-level estimates of palliative care need for each of the four UK nations and explore how these changed during the COVID-19 pandemic.

Methods: We conducted a descriptive analysis of routine data. We used a well-established, diagnosis-based methodology which produced minimal estimates of palliative care need based on underlying causes of death, intermediate estimates based on underlying and contributory causes of death; and maximal estimates based on excluding unexpected causes of death. Additional estimates incorporated deaths involving COVID-19. All methods were applied to official mortality statistics from England, Wales, Scotland, and Northern Ireland for the years 2017 to 2021.

Results: From 2017-19 for the UK in total, palliative care need was estimated at ~74% (minimal), ~90% (intermediate) and ~96% (maximal) of total deaths, which was broadly consistent with previous studies. Results were similar across all nations. In the pandemic years, 2020-21, the minimal estimates remained stable in terms of the number of people in need but dropped significantly in terms of the proportion of deaths associated with palliative care need (to ~66%) due to the overall increase in mortality and large number of deaths from COVID-19. The intermediate (~90%) and maximal (~96%) estimates showed an increase in the number of people in need but remained stable in proportion of deaths. When deaths involving COVID-19 were treated as deaths associated with palliative needs, the minimal estimates increased to ~77% and intermediate estimates increased to ~92%.

Conclusions: In each of the UK’s nations, most people who die will have palliative care needs. Excluding deaths from COVID-19 in population-level estimates of palliative care need risks under-estimating true levels of need. Future studies which estimate population-level palliative care need should explicitly consider how they factor in deaths from COVID-19.

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DOI

https://doi.org/10.1186/s12904-024-01574-5

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https://www.research.ed.ac.uk/en/publications/6d112dd0-a77e-4f48-9840-8072046c557f