News and Comment

End of life care – something needs to change

Wednesday 16 July 2014


As the population ages, the question of how we as a society care for people at the end of their lives is becoming ever more pressing. It is widely recognised that current systems for providing care for people at the end of life are not up to scratch. Only 7% of the population want to die in a hospital, with 66% saying they would prefer to die at home; yet in 2010 about 60% of deaths were in hospitals.[1] This is putting a huge strain on individuals and their loved ones, as well as on the healthcare system.

What is preventing people from dying in their own homes if that is their choice? One major factor can be the lack of social care support for everyday needs such as washing, feeding, and emotional support. Social care currently falls within the remit of local authorities and is subject to means testing – which means that many people at the end of their lives are required to pay if they want to have their social care needs met at home. Social care support can, however, also be obtained for free through the NHS Continuing Healthcare route. But this system is widely regarded as too difficult and slow to access. When it comes to providing care for the dying, we only have one chance to get it right – but too often we do not.

The calls to correct this situation have become louder in recent years, with a number of reports and reviews, such as the 2010 Dilnot Commission[2] and the 2011 Palliative Care Funding Review,[3] urging for change. It is in this context that a coalition of six charities has come together to campaign for universal, free social care at the end of life, to enable people to die in the place of their choosing. The coalition brings together Macmillan Cancer Support, Help the Hospices, the National Council for Palliative Care, Motor Neurone Disease Association, Sue Ryder and Marie Curie Cancer Care.

Our research

As part of their campaign the coalition commissioned OPM to conduct research on how free social care at the end of life could work in practice. Earlier this month OPM’s Dr Chih Hoong Sin presented our research at the All-Party Parliamentary Group on Hospice and Palliative Care, highlighting key findings from our recently published report, ‘How could free social care at end of life work in practice’.

We looked at a number of existing models of end of life care where social care is free, to learn what was effective about these and how they might be replicated elsewhere. We reviewed existing literature, examined 12 different services including two in-depth case studies, and spoke to a number of practitioners, to try to work out how free social care at end of life can work in practice.

We found that a range of different localities and services are working to make free social care at the end of life a reality. However, this provision is by no means consistent nor universally available. Our key recommendations for how to change this so that everyone has access to free end of life care were:

  • Improving what is already available, such as NHS Continuing Healthcare Fast Track funding. National guidance already exists but all too often this is not being followed locally; relevant measures need to be put in place to overcome the ‘implementation gap’;
  • Encouraging innovation and new models such as the successful STARS Care programme in Liverpool, which provides a tailored, specialist care service for people at end of life;
  • Ensuring commissioning of end of life care is more consistent across the country and prioritises holistic, person-centred care; whilst allowing for adaptation and innovation at the local level;
  • Focusing on quality to make sure that everyone has access to the same good standard of care – and robustly monitoring this;
  • Supporting strong partnerships between commissioners, services, professionals, providers, patients, carers and families, to embed a collaborative approach centred on the dying person.

There was consensus at the APPG event on 2nd July that the case for free social care at end of life has been definitively made; as Imelda Redmond from Marie Curie put it, “the moral argument has been won.” It is now a case of thinking about how, which our research set out to do. A key remaining question is where funding for free social care at end of life can be found; a significant step has been made in a recent Macmillan report which suggests that the NHS could actually save money by supporting people to die in their own homes rather than in expensive hospital beds.

In the end of life care arena there is much action afoot – with changes in the Care Act, and the Palliative Care Funding Review pilots. But more still needs to happen. And it won’t be a moment too soon, in the face of our ageing society, ongoing patchy provision, and the real challenges of soon ‘unsustainable’ local authority care budgets highlighted in this month’s ADASS report.

These challenges are pressing, and we urgently need a better system for care at the end of life. The campaign for free social care at end of life is thus bound to gather momentum in the months ahead. And, with all three of the main parties expressing support for this policy, can we hope that it will soon be a matter of when, and not how, free social care at end of life will become a reality for everyone?

[1]Leadbeater, C. and Garber, J. (2010). Dying for Change. Demos. p.20.
[2] Dilnot,  A. (2011). ‘Findings of the Commission on Funding of Care and Support’. Slideshow. The King’s Fund website.
[3] Hughes-Hallett T, Craft A, Davies D (2011). Funding the right care and support for everyone. Report of the Independent Palliative Care Funding Review. London: Department of Health.