Study into end of life care of more than 73,000 people shows 'considerable variation'

A major study tracking the ways that more than 73,000 people used publicly funded health and social care services during the last months of their lives has been published today by the Nuffield Trust.

Believed to be the largest study of its kind, the research reveals considerable variation between local areas in the care people receive at the end of life and suggests that social care may prevent the need for hospital admission.

Researchers behind the project argue that the techniques used in the analysis can help to improve understanding of where best to invest resources in health and social care, thereby helping to improve care for people in the last months of their lives.

The worry is that if funding for social care is cut back, people may have no option but to use hospital care

Dr Martin Bardsley, Director of Research, Nuffield Trust and report co-author

The report – which was commissioned by the National End of Life Care Intelligence Network – draws on information from a population of more than three million people across seven different local authority areas in England.

The health and social care records of all the people who died over a one- to three-year period were extracted, with all sensitive personal information removed so the identities of individuals could not be identified.

By using innovative methods to link different datasets, the researchers were then able to see, for individual (anonymised) people, the type of hospital services and local authority-funded social care services used in the months leading up to death. In addition, costs were attached to these services, so it was possible to estimate the overall resources linked to care in this period.

The findings, published in full in: Understanding patterns of health and social care at the end of life (Nuffield Trust, October 2012), show:

• There were significant differences in the use of social care between groups of individuals with certain long-term conditions: people with dementia, falls and stroke tended to use most social care services, while people with cancer used less (even when adjusted for age);

• There was considerable variation in the use of social care between local authorities. For example, there were twofold differences in the proportion of people using social care in any given month prior to death – even when rates were standardised for age and sex differences between areas;

• Individuals with the highest social care costs had relatively low average hospital costs – this was broadly the case irrespective of age, and suggests that use of social care may prevent the need for hospital care. This may become increasingly important if local authorities continue to restrict funding of care services to those people with the most critical needs only;

• Individuals used social care well before the last few months of their lives. While hospital costs showed a sharp increase in the final few months, social care costs rose gradually up until death. The greatest increases in social care use in the last months of life were because of increasing use of residential care homes.

The costs of social care for people at the end of life were reasonably predictable which led the authors to suggest that the economic risk to the Government of funding social care at the end of life – currently means-tested – would not be great.

Commenting on the findings, Nuffield Trust Director of Research, and report co-author Dr Martin Bardsley said:

“People are very vulnerable in the last months of their lives, and achieving appropriate and well coordinated care across health and social care is critical. Our study suggests how social care might be effectively substituting for hospital care for this group of people.

"The worry is that if funding for social care is cut back, people may have no option but to use hospital care. This may not be the best care for people who wish to be at home in their last months of life, as well as costing far more for the NHS.

"Given the short- to medium-term financial climate, this type of analysis is critical now more than ever if more value for patients is to be extracted from public funds.”

Claire Henry, Director of the National End of Life Care Programme added:

“We know that 71 per cent of people would prefer to die at home. This report highlights the need for closer integration between health and social care to make that happen. It provides crucial information to enable more to be done in terms of service provision so that more people can live and die well in their preferred place.

"In the current economic climate, intelligence about where to best direct resources is invaluable. We need to work effectively and collaboratively to deliver person-centred end of life care that meets the needs of each and every individual.”