People from the most deprived areas of England who die at home are left with less NHS care, such as 50% fewer outpatient appointments, in the final months of their lives compared to those dying in the most affluent areas, new analysis reveals.
The number of people dying at home in England rose by a third during the pandemic, from 117,000 per year on average to 156,000, making it more important than ever that people have access to the right care outside of hospital at the end of life. However, this new research shows how the pandemic exacerbated stark differences in service use between different neighbourhoods for things like planned treatment and medication for those dying at home. But even as numbers dying at home rose sharply, a higher proportion overall had an interaction with their GP practice at the end of life.
The research, published by the Nuffield Trust, provides the most detailed analysis of end-of-life care before and during the pandemic in England to date. Using data from NHS England, the research tracks 24 million people across hospital data, GP records and death certificates. It looked at which services were used and received in the last three months of life by people who died between June and February in the year before Covid-19 emerged, and by those who died between June 2020 and February 2021 as the pandemic raged.
Key findings include:
- Disparities in care based on levels of deprivation in different places are a longstanding problem for people who die at home. They persisted or worsened during the pandemic. People who died at home in the most deprived areas received 2.2 interactions with their GP on average before the pandemic, compared to 2.7 interactions for people from the most affluent areas. This gap widened to 3.3 interactions compared to 4.2 during Covid-19. There was also a large gap in the number of outpatient appointments, and this too grew during the pandemic.
- On average people in the most deprived areas were prescribed 50% fewer medications to manage their pain and symptoms compared to people in the most affluent areas, and this gap remained stable during the pandemic.
- 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. However, the patient representatives we worked with warned that a lot of time could be spent trying to access services and more contacts may not equate to higher quality of care.
- 38% of people who died at home during the pandemic were prescribed at least one medication to help manage their symptoms, compared to 34% before the pandemic. This increase is probably a sign that people’s needs were being met, although our patient representatives warned communication about what medications did and how to use them could be lacking.
- We also found ethnic inequalities in access to care. The increase in medications prescribed was larger among White people, and people of Mixed ethnicity received less medication during the pandemic.
- The proportion of people who died at home receiving planned hospital care fell during the pandemic, from 5.3% to 4.8%. This reflects wider trends to deprioritise and delay planned treatment, but for those at the end of their lives delay would often have meant never getting help.
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. Local integrated care boards must use data from a range of health and care services to address the longstanding inequalities we found, and ensure services are in place for people to die at home as well as possible.
Commenting on the research, Nuffield Trust Deputy Director of Research Sarah Scobie said:
“It is deeply unfair for people to experience disparities in care access and quality at the end of life, a time when all people deserve support and dignity. Without proper care, people will be living their final days in pain and discomfort, and poor care has long term impacts on families and those left behind.
“Our findings highlight the significant health needs of people approaching the end of life, as well as evidence of unmet need, and inequalities in access to care. We are continuing to see much higher numbers of people dying at home than before the pandemic, raising important questions about whether community services are able to cope. It is essential that both access to and the quality of that care continue to be monitored to understand the ongoing implications for individuals, and their families and loved ones.”