Our health services are not just about our health. They are also heavily involved in our deaths.
This year, for every 1,000 people in England, nine will die. Eight of those nine will have some hospital care during their final year of life. For four or five, a hospital bed will be their last.
Unsurprisingly, people who are near to the end of their lives are disproportionately high users of hospital services. We estimate, that approximately 15% of all emergency hospital admissions in England belong to the 1% of people in their final year of life.
We know that very many people receive excellent end-of-life care in hospital, but a troubling number do not.
In the third national survey of bereaved people (‘VOICES’), 14% of respondents whose friend or relative died in hospital rated the overall quality of end of life care to have been poor. This was roughly twice the proportion that reported poor levels of end of life care where deaths had occurred elsewhere – in care homes, in hospices or at home.
Death is a profoundly difficult time, and it is especially distressing for feelings of loss and sadness to be compounded by poor and insensitive care.
While programmes exist to help improve the end of life care that people receive in hospitals, in recent years there has also been increased attention on the part of health and care services to help people to die wherever they will be most comfortable, and at home if that is preferred. In 2009 the Dying Matters Coalition was set up to encourage and support people to talk more candidly about death, and to make plans for the end of life.
We have indeed seen the focus of end of life care slowly shifting away from hospitals. In 2012 44% of people in England died either at home or in a care home - up from 38% in 2008.
But as care moves away from hospital wards, community-based services may increasingly be expected to provide more support for those who are dying at home, or in care homes. In this context, it’s essential that we know how the wider health and care system is presently involved in caring for people in their last months of life. To accommodate changes in care patterns for people who are dying, funding may ultimately have to shift between services. But unfortunately, detailed information on the care that individuals receive at the end of life is not widely available for services outside of hospital. This is something that NHS England’s Palliative Care Funding pilots were set up to address.
With our new study, we’ve been able to fill in some of the gaps in information by making use of person-level care datasets obtained from a variety of care services.
We’ve calculated new estimates of the costs of end of life care services in hospitals, social care, general practice and district nursing. The data we used was sometimes limited, but our analyses nevertheless provide a valuable glimpse into how these services care for people at the end of their lives.
We found that hospital care was by far and away the most significant service in terms of its costs, with average costs in the last 90 days of life more than four times as large as those of local authority funded social care services - the next most costly care service. District nursing and GP consultation costs were more modest overall.
With such substantial hospital care costs at the end of life, any reduction in admissions could give us the opportunity to expand community-based services without altering the health system’s total costs. Indeed there might even be sufficient savings available to help us to redevelop more fundamentally the way we deliver care to those who are dying. This is something that we reflect on in our report with reference to Marie Curie Cancer Care’s palliative care nursing service.
It’s not always comfortable to examine the care of people at the end of life in terms of how the health and social care system pays for this care. But as we move to caring for more people in the final days of their lives outside of the traditional hospital setting, it is hugely important that we have some way to quantify and assess how this care is provided and funded. The data are limited, but our study makes a start.
Georghiou T (2014) ‘Counting the cost of end of life care’. Nuffield Trust comment, 25 September 2014. https://www.nuffieldtrust.org.uk/news-item/counting-the-cost-of-end-of-life-care