Estimates of Population-level Palliative Care Needs in the UK: Pre-Pandemic and During the Pandemic

Abstract

Abstract Background: Existing estimates of palliative care need were produced before the COVID-19 pandemic and estimates across the UK nations had methodological differences. 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: The study design was a descriptive analysis of routine data. We used a well-established, diagnosis-based methodology which produced minimal estimates of palliative care based on underlying causes of death, intermediate estimates using underlying and contributory causes of death, and maximal estimates which excluded unexpected causes of death. Additional estimates were produced which incorporated deaths involving COVID-19. These methods were applied to official mortality statistics from England, Wales, Scotland, and Northern Ireland for the years 2017 to 2021. Results: Results were similar across all nations. 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. In the pandemic years, 2020-21, the minimal estimates remained stable in terms of number of people in need but dropped significantly in terms of 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 during the pandemic. 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 estimate increased to 77% and intermediate estimates increased to 92%. Conclusions: In each of the nation of the UK, most people who die will have palliative care needs. Excluding deaths from COVID-19 from population-level estimates of palliative care need risks under-estimating true levels of need in the population, particularly for estimation methodologies that look exclusively at underlying cause mortality data. Future studies which estimate, explore trends in and project population-level palliative care need should explicitly consider how deaths from COVID-19 are factored in.