Deaths at home during the Covid-19 pandemic and implications for patients and services

Since the start of the Covid-19 pandemic, a third more people have died at home in England. Did those people get the care they needed at home, and was it good quality care? Patients and families often have fairly clear priorities in regard to end-of-life care: things like 24/7 access to support and medication, the coordination of care and clear communication are vital. Yet improvements in care have so far been elusive, and data on the services provided to people approaching the end of life or the quality of care they receive is limited.

This new research sheds light on the services used by people who died at home in England, both before and during the first year of the pandemic, including looking at variation between socioeconomic and ethnic groups, and by cause of death. A patient and public involvement group provided an important perspective on the findings based on their own experiences of end-of-life care.

Key findings across services are as follows:

• The pandemic exacerbated socioeconomic inequalities in service use. People from the most deprived areas who died at home used less of almost all services than people from the least deprived areas, and were prescribed fewer medications for symptom management. For general practice interactions the difference grew during the pandemic, with people from the most deprived areas having almost one whole interaction less than people from the least deprived areas.
• People from Asian ethnic backgrounds were more likely to use hospital beds in an emergency and to use general practice services before the pandemic. While general practice interactions increased for all ethnic groups during the pandemic, the increase was largest for people from white ethnic backgrounds.
• People who died at home were less likely to have planned hospital admissions during the pandemic, with 4.8% having at least one admission during the pandemic compared with 5.3% pre-pandemic. People who died from circulatory diseases also had fewer outpatient appointments during the pandemic. These differences reflect reductions in planned care across the board, as the NHS focused on responding to Covid-19, but for people approaching the end of life, the reductions were not just a matter of delaying care.
• Conversely, there was an increase in the use of Accident & Emergency (A&E) during the pandemic for people who died at home, particularly for people who died from dementia and Alzheimer’s disease. For this group, the proportion of people who had at least one A&E visit in the last month of life increased from 12% to 15% and there was also an increase in how often people went. 
• Use of general practice increased during the pandemic among people who died at home. The proportion of people with at least one general practice interaction in the last month of life rose from 64% pre-pandemic to 75% during the pandemic and the number of interactions per person also increased, from 2.5 to 3.8.
• People who died at home during the pandemic were more likely to be prescribed at least one medication for symptom management than people who died at home before the pandemic (38% vs 34%) and the number of medications prescribed per person increased from 1.3 to 1.5 between the pre-pandemic and pandemic periods. However, our patient and public involvement group highlighted that patients and families were not always clear what different medications were for, and wanted more support surrounding the use of medications, particularly when a syringe driver was needed.

Much more work needs to be done to develop measures to tell us about the quality and outcomes of end-of-life care and to understand people’s experiences. Our patient and public involvement group highlighted that an increase in the quantity of care may not reflect an increase in quality. For example more general practice contacts were remote rather than face to face during the pandemic, which could have affected the quality of care people received.

The pandemic did not cause the challenges around care for people dying at home, but the shift towards more people dying at home has intensified the impact. As the trend continues, it is becoming increasingly essential that the delivery of care at home is tracked over time. This needs to include understanding inequalities in access to care, and further work to assess the quality of provision, to ensure services are responsive to the needs of individuals, and their families and loved ones.