Hundreds of thousands of people die in hospital each year when they could die where they want to, at home, according to a new report published by Demos today. A growing dependence on hospitals to care for the dying only increases distress for terminally ill people and their families as well as taking up valuable NHS resources. An estimated 20 per cent of hospital beds are currently taken up with end of life care.
Of the half a million people who die in Britain each year, 60 per cent die in hospital, even though only eight per cent would choose to die in a hospital. Two thirds of people (60 per cent) would prefer to die at home, surrounded by family, friends and cherished possessions. Yet as the baby boomers reach the end of their lives, the number of people dying will hit 590,000 in 2030 when just 1 in 10 people will die at home.
Two in five (40 per cent) people who die in hospital do not have curable conditions and most people will be ill for 6 years before they die. The Demos report recommends better end of life planning and improved, more personalised care for both those who are dying and their families with the creation of an alternative system focused on enabling more people to die at home or with support in the community.
The report Dying for Change estimates that an investment of £500m a year, about 2.5 per cent of NHS spending on end of life care, would fund the backbone for community services that would allow 50 per cent of people to die at or close to home. This investment would more than pay for itself in a decade through fewer and shorter hospital admissions. Currently an estimated £20bn of NHS services is spent on end of life care, rising to around £25bn in 2030.
£500m of investment would fund:
· Creating new places for people to die close to home and with their families. These could be in the form of community hospitals, ultra-local home hospices and shared housing schemes with expert nursing support.
· Strengthening family care capacity by introducing a Compassionate Care Benefit or Care Leave entitlement, to provide financial support for people looking after a dying relative.
· Creating a trained volunteer support network modelled on Kerala’s (India) Neighbourhood Network for Palliative Care. A UK-wide system of one volunteer for every 2.5 patients would cost £74m to coordinate and provide 40,000 hours of support.
· Setting up a dedicated 24/7 nursing support service at a cost of £33m to help people cope with medical crises, especially overnight and at weekends.
· Establishing an end of life telephone help line that would build on the UK pilot of phone lines to support carers.
· Setting up a national ‘hospice at home’ service to go to people dying at home. A hospice at home service supporting 90,000 people each year would cost £150m.
· Providing people with a dedicated relationship, such as Age UK’s End of Life Advisors who work with clients over a prolonged period to help them navigate their final years or months.
· Spreading the use of personal budgets to end of life care so that people and their families have scope to commission the kinds of care they want.
Demos calls for a ‘Big Society’ response to a dying population, in which civic, mutual and self-help solutions play a much greater role. Government support to get these networks off the ground will be crucial in forming a caring and cost-effective response to the unprecedented number of the deaths the UK will deal with in the future.
Further recommendations for a ‘Big Society approach’ to death include:
· Encourage ways for people to talk more about death so that individuals can express what they want at the end of their lives and government, society and professionals can improve services.
· The UK should draw on the models of federated schools to link hospices to groups of care homes so that hospice skills and values migrate to care homes.
· Services should be commissioned by End of Life Trusts in an integrated way that brings together public, private and voluntary providers within a community.
Charles Leadbeater, co-author of the report said:
“It’s not just that we’re living longer; part of this means that people are dying over a longer period losing first their memory and then their physical capacities in stages. As things stand we spend very large sums on services, especially in hospitals and care homes, which do not allow people to die in the way they would want.
“This is a critical test of the Big Society. People want Big Society style solutions: they want to die at home or in the community rather than in institutions. But they also do not want to be a burden on their families. If we put in the right kind of supports for people to cope at home, many tens of thousands of people could have a chance of achieving what they want at the end of life; to be close to their family and friends, to find a sense of meaning in death. If the Government is serious about the Big Society it should invest in a network to properly support people at home, not assume that more people will voluntarily take on that burden.”
David Praill, chief executive of Help the Hospices, the national charity which supported the independent report, commented:
“We hope and believe that this report will help to stimulate more public debate around dying and what needs to be done to prepare society for future needs. It is very gratifying to see that the authors’ findings are so in tune with hospices’ own approach, namely: care tailored to the needs of the individual and in the place of their choosing. This is the bedrock of good end of life care, and it so often requires a collaborative approach between organisations and service providers. 70 per cent of hospice care takes place in people’s homes and a growing number of hospices – already over two thirds – provide support to care homes to ensure residents get the palliative care they need.
“The report’s proposals give a lot of food for thought, and I believe that hospices will have a lot to contribute to and gain from the ensuing discussions and their outcomes.”
Notes to editors
Half a million people die each year, with 290,000 (58 per cent) of these deaths occurring in hospital. A YouGov poll for Demos found that two thirds of people would prefer to die at home, meaning that 191,400 people die in hospital each year when they would rather die at home.
Dying for a Change by Charles Leadbeater and Jake Garber is by published by Demos on Sunday 14 Novemeber 2010. The report can be downloaded for free from www.demos.co.uk
The research included desk-based research, fieldwork observation, interviews, five focus groups, a YouGov poll of 2,127 individuals and economic analysis.
Charles Leadbeater and Jake Garber are available for comment and interview. Case studies are available.
Beatrice Karol Burks, Head of Press
020 7367 6325 or 07929 474938
Demos is a think tank focused on power and politics. Our unique approach challenges the traditional ‘ivory tower’ model of policymaking by giving a voice to people and communities and involving them closely in our research.
About Help the Hospices
Help the Hospices is the leading charity supporting hospice care throughout the UK. In particular we support our 213 hospice members in their vital work on the front line of caring for people who face the end of life.
The majority of hospice care is provided by our members – local charities rooted in the communities they serve. Hospices provide a wide range of care for people living with life-limiting and terminal illness and their families. Most care is provided in people’s own homes, but people also visit hospices for day therapy and stay as in-patients.
Health services are funded separately by the devolved government in each UK nation. In England the government contributes an average of 32% of running costs for adult hospices (predominantly through primary care trusts) and about 15% for children’s hospices – the rest has to be found by charitable fundraising (note: based on latest figures available). About 100,000 volunteers work in UK hospices, and hospices could not do the work they do without them.