The cost of caring for people at the end of life

What role should social care play to support someone at the end of life to die in their own home? And how can health and social care services work together to make this choice a reality?

Macmillan Cancer Support’s own research shows that, with the right support, 73 per cent of people with cancer would prefer to die at home – but only 27 per cent actually do. If people’s end of life wishes are to be respected, it is vital that we answer these two questions.

Macmillan has been campaigning for the Government to make social care free for people at the end of life. The thoughtful and groundbreaking study published today by the Nuffield Trust adds significant weight to the argument.

The report vastly improves our understanding of the cost of caring for people at the end of life and encourages a debate on what role integrated, coordinated care can play in keeping people at home in their last days.

Specifically, this new research, commissioned by the National End of Life Care Intelligence Network, suggests that better access to social care has the potential to reduce the need for someone to be admitted to hospital at the end of life.

However, there is considerable variation in the use of social care services by local authorities, meaning access to vital services remains uneven across the country and consequently many people are still dying in hospital against their wishes.

The report chimes with what I have heard from Macmillan social care professionals about how it is often help with the small things, like washing, dressing or turning someone in bed, which can make a big difference for families affected by cancer and is crucial to keeping people out of hospital at the very end of life.

This is why Macmillan – along with Help the Hospices, Marie Curie Cancer Care, the Motor Neurone Disease Association, the National Council for Palliative Care and Sue Ryder – has been campaigning for all people who are on an end of life care register to have access to free social care.

We believe this would remove a significant barrier to people getting the social care services they need and at the same time reduce the number of costly, preventable hospital admissions.

The Nuffield Trust’s work shows that the cost of caring for someone in hospital increases sharply in the final few months of life – especially for emergency care. The cost can be as much as £90,000 a person.

Social care costs, however, are more predictable and constant, and home care is on average cheaper than care in hospital.

The Nuffield Trust rightly stresses that the Government must take note of these findings, as they should temper any fears that free social care for people at the end of life would be too expensive.

We only have one chance to get care right for people at the end of life. Our ageing population and over-stretched health service means that the NHS will not be able to meet the rising costs of people being admitted to hospital unnecessarily at the end of life.

Care for people at the end of life needs to improve as a matter of urgency. Nuffield Trust are showing us it is do-able.

The Government has already said they are supportive of the principle of providing free social care at the end of life and have committed to assess its benefits as a first step.

This report adds further weight to the evidence for this policy change. As the Palliative Care Funding Review pilots begin to measure the impact of free social care for people at the very end of life we hope the Government draws on the expertise of the Nuffield Trust, Macmillan and our partner charities to ensure this work is as comprehensive as possible.

I sincerely hope that this report will help convince decision makers that removing the social care means test for people in the final weeks and months of life is viable, beneficial and common sense.

Ciarán Devane is Chief Executive at Macmillan Cancer Support. Please note that the views expressed in guest blogs on the Nuffield Trust website are the authors' own.