The quality of end of life care is important to patients, their friends and their relatives. About half a million people in the UK die each year, but there are major gaps in our understanding of what services are appropriate, and concerns that too often people are dying in hospital when they would rather be at home. We are carrying out a number of projects examining end of life care.
Dr Jane Collins, Marie Curie Cancer Care, discusses the impact of the Marie Curie Nursing Service
Care at the end of life is an important national priority in England, with the national strategy set out by the Department of Health in 2008 aiming to help people have the care support they need beyond the acute hospital setting.
Supporting people at the end of their lives is a complex task, often requiring a patchwork of different services. We are taking forward some key projects to help to improve understanding of the patterns of health and social care use at the end of life, and to evaluate a service that aims to allow terminally ill people to be cared for at home.
Over half of all deaths in England and Wales take place in hospital, although surveys repeatedly suggest that the majority of people would rather be cared for at home at the end of life.
The Marie Curie Nursing Service (MCNS), part of Marie Curie Cancer Care, provides end of life nursing at home to around 28,000 people annually in the UK. It aims to allow people who so choose to be able to spend their last few days at home. We were commissioned by Marie Curie to evaluate the impact of the MCNS on where people die and on their use of hospital care at the end of life.
We compared place of death, and use and costs of hospital care, for nearly 30,000 people who received MCNS care between January 2009 and November 2011, with a similar number of matched controls selected retrospectively from within England who died in the same period.
The results show that people who received MCNS care were significantly more likely to die at home than those who received ‘standard’ care. People who received MCNS care were also much less likely to use all forms of hospital care than those in the control group, and hospital care costs were significantly lower for MCNS patients compared with the matched controls.
Read the full findings in the report: The impact of the Marie Curie Nursing Service on place of death and hospital use at the end of life (Nuffield Trust, November 2012).
Despite the vast numbers of people requiring care and support at the end of their lives, there is a shortage of information about this care and major gaps in our understanding of what services are appropriate. We have been attempting to address this shortfall.
Social care and hospital use at the end of life (Nuffield Trust, December 2010), explained how we extracted and linked together anonymous health and social care records to study the care history of people who died in three primary care trust/local authority areas.
The techniques used in this analysis mark a significant step forward in information about end of life care
We were able to examine the use and estimated costs of hospital and social care services for 16,479 people at the end of their lives, and found some evidence that higher social care costs at the end of life tended to be associated with lower inpatient costs.
The techniques used in this analysis marked a significant step forward in terms of providing a better understanding of health and social care services used by people at the end of life. However, the study was limited to a very small set of areas, and so we were commissioned by the National End of Life Care Intelligence Network to conduct a larger follow-up study.
Understanding patterns of health and social care at the end of life (Nuffield Trust, October 2012) reports on what is believed to be the largest study of its kind, bringing together information from local authorities responsible for over three million people across seven local authority areas in England.
The research built a picture of how the care system dealt with over 73,000 patients during the last 12 months of their lives. The study revealed considerable variation between local areas in the care people received at the end of life and suggested that social care may prevent the need for hospital admission.
Related to this work, you can also read an article by Nuffield Trust researchers published in the spring 2012 edition of the Journal of Health Services Research and Policy, which addressed the overlap of hospital use and social care in older people in England.
A 2004 study of high performing medical centres in the US by Wennberg and colleagues found striking differences in the use of hospital services in the last six months of life between one hospital centre and another. These patterns showed, for example, an almost three-fold difference in the number of days spent in hospital between different hospital centres.
We have been working with Professor John Billings, New York University, to undertake a study of acute care at the end of life in England, looking specifically at the factors associated with variation in hospital use at the end of life.
The study exploits the anonymised electronic records of more than 1.2 million people who died during a three year period. We are testing for variation between different acute hospital providers and hospital types, by diagnostic groups, age, sex and ethnicity and by local areas of residence. The findings from this research will be published in 2013.