Using electronic health record data accessed via OpenSAFELY to develop indicators of end-of-life care quality

An understated disruption to health services brought about by the Covid-19 pandemic was the increase in deaths occurring outside a hospital. Since quality of end-of-life care is typically monitored through place of death and hospital activity, a new approach focused on care in community settings is needed. In this study, we aimed to test whether patient-centric measures of quality at the end of life can be derived from primary care electronic records. With the approval of NHS England, analysis was undertaken in OpenSAFELY-TPP using electronic health care records of over 970,000 patients who died between March 2019 and August 2023, covering periods before, during and after the pandemic. We developed two new measures of end-of-life care quality--specialist palliative care team contacts and advance care planning, and tracked the proportion of patients with these records, categorized by place and cause of death, along with an existing measure indicating palliative care needs. The proportion of people with a GP record of specialist palliative care was 4-5% on average, higher for those who died of cancer or died in a hospice. Advance care planning records increased from 19% to 27% (barring a decrease following the onset of the Covid-19 pandemic) driven in large part by increases for patients who died in care homes. Advance care planning and recording of palliative care needs were plausible measures to track changes in care, unlike the specialist palliative care measure where recorded use was sparse. Improved coding in primary care records would improve reliability of measures. Key messagesO_LIQuality of end-of-life care is traditionally measured by how patients use health services (for example emergency department attendances) C_LIO_LIWe used routine GP health records to track aspects of end-of-life care quality which matter to patients and discuss the impact of the covid-19 pandemic on these quality measures C_LIO_LIA new measure of advance care planning and the existing palliative care needs measure could be used to track end of life care delivered in the community C_LIO_LIThe measure of specialist palliative care was sparsely coded and unlikely to be useful unless coding and data linkage between GP and other systems improves C_LI