Since the start of the Covid-19 pandemic, a third more people have died at home in England, raising significant questions about whether people can access the care they need at home and the quality of that care. While the priorities of patients and families in regard to end-of-life care are well understood – including 24/7 access to support and medication, the coordination of care and clear communication – improvements in care have been elusive. Limited data are published about the services provided to people approaching the end of life or the quality of care they receive, particularly for those who die at home. This research sheds new light on the services that people who died at home in England used, both before and during the first year of the pandemic. It uses data covering a population of 24 million people linking GP clinical records, hospital data and death registrations. The analysis provides insights into service use in the last months of life, and how this changed after the start of the pandemic. It also looks at variation between socioeconomic and ethnic groups, and by cause of death. Our patient and public involvement group, which included people who were receiving end-of-life care as well as family members, provided an important perspective on the findings, based on their own experiences of care. Our findings highlight the significant health needs of people approaching the end of life, as well as evidence of unmet need, both before and during the pandemic. The proportion of people recognised as having palliative care needs – a critical foundation for providing quality end-of-life care – increased slightly during the pandemic, but around 60% of people who died either before or during the pandemic did not have palliative care needs recorded in their GP record in their last year of life. We found that, for most services, similar or greater volumes of care per person were provided during the pandemic compared with the pre-pandemic period, but with the increased number of people dying at home, there was a shift towards more care being delivered in the community. This has significant implications for resources and capacity across community services and primary care.
Original content: Health Data Research Innovation Gateway
