Death and Dying: Understanding the Data

by Dr Phil McCarvill Head of Policy

A new report from Marie Curie  Death and Dying: Understanding the Data shows that there are big differences in access, experiences and outcomes for people who are terminally ill across  England. End of life care in England is currently provided by hospitals, hospices, nursing and care homes, general practitioners, nursing services, families, carers and volunteers.  This diversity is important as it means that we can meet the different needs and wants of people in the last year of life.  However, it also means that people using different services, in different parts of the country can have very different experiences. Over the last twelve months we have learnt a lot about the care we provide for terminally ill and dying people.  Marie Curie Cancer Care’s new report pulls together much of the data which has recently been published and is available via the Marie Curie End of Life Care Atlas - an online tool for commissioners.  Taken together with The Voices Survey of the Bereaved, the Nuffield Trust’s reports on social care at the end of life and the independent evaluation of the Marie Curie Nursing Service, Death and Dying gives us a much clearer understanding of the needs and experiences of terminally ill people and their families.  The report is another piece in the ever growing end of life knowledge jigsaw. The data presented is not new, what is new is analysis which shows how we can use this knowledge base to improve the quality of care for the terminally ill and dying people across all settings and all parts of England.  It is hoped that the report and the Marie Curie End of Life Care Atlas will help Clinical Commissioning Groups determine how their area and different services compare, to address unmet needs and improve care for all, regardless of locality or provider. The report paints a complex picture of end of life care, but one of the key messages to emerge is that many people of the people who die in hospital have no medical need to be there, do not want to be there and ultimately experience poorer care if they end up there.  Publication of the Francis report into Mid Staffordshire NHS Foundation Trust has heightened the national focus on the quality of hospital care in England. This does not mean that we are calling for a mass clearance of hospital wards, but rather for a well planned, system-wide programme to shift the focus and ultimately resources away from acute hospitals in order to provide greater support for people in care homes, hospices and their own homes. Historically commissioners and policy makers have shied away from moving resources from acute hospitals to community based care (whether hospices, residential care homes or people’s own homes) because of the lack of an evidence base for such a move.  What we have learnt over the last twelve months should provide the basis for just such a shift. Our ageing society and on-going constraints on public spending provide a further stimulus for major such changes now, whilst the NHS reforms mean that now may well be the optimum time to trigger such a move.  Major reconfiguration and re-prioritisation provides an ideal opportunity to rebalance services. And strengthen the local focus on care for terminally ill and dying people.  This shift will help ensure the long term viability of the health and social care system, whilst giving people more of what they actually want. For the updates on our Policy & Public Affairs work, recently published research reports and reactions to key policy developments follow us on Twitter @MarieCuriePA