Background
The pattern of death in the UK has changed dramatically in the past 100 years. At the end of the 19th century 85 per cent of people died at home, the majority from acute infections. Today 58 per cent of the 500,000 deaths each year occur in hospital, mainly from chronic long-term conditions. Long-term projections by Gomes and Higginson1 suggest that if current trends continue unchecked, fewer than one in 10 people will die at home by 2030 while deaths in institutions will rise by over 20 per cent.
Significantly, while many people with cancer are now dying at home or in a hospice the vast majority of those with long-term conditions, such as heart disease or pulmonary disease, end their days in an acute hospital.
End-of-life care – that is, holistic care for those approaching the end of their life – has tended in the past to be seen as the an area for the voluntary sector, especially the hospice and palliative care movements.
However, that is beginning to change. Increasingly, end-of-life care is seen as the remit of many different generalist health and social care providers and not simply specialist palliative care professionals. That in turn highlights the importance of having a co-ordinated system involving a wide range of providers, care planners and commissioners across the entire health care system.
The NHS Cancer Plan in 2000 unveiled plans to help patients with advanced cancer to be cared for at home for as long as possible and to die there if they wished. The Department of Health’s Building on the Best strategy paper in 2003 set out to extend this choice to all those approaching the end of their life, not just those with cancer.
This was backed by a £12 million Department of Health investment, leading to the creation of the National End of Life Care (EoLC) Programme in 2004 with the specific objectives of improving the quality of care for all and enabling more patients to live and die in the place of their choice.
The EoLC Programme has encouraged a holistic approach to end-of-life care, working across organisational boundaries and in partnership with the individual and their family from the point when the person is identified as dying and in need of supportive care, all the way through to bereavement after the death. This is especially important in end-of-life care where so many different services may be needed and the absence of the right service at the right time can mean people end up in hospital when they don’t wish to.
Three particular tools, or models of care, which were used exclusively in cancer – the Gold Standards Framework, the Liverpool Care Pathway and the Preferred Priorities for Care – are now being adapted for a range of conditions and are employed increasingly widely. Using these tools has the potential to provide more co-ordinated care for patients who are nearing the end of life, giving all providers access to a shared care plan that has been discussed and agreed with patients and carers.
1Gomes B, Higginson IJ. Where people die (1974-2030). Past trends, future projections and implications for care. Palliative Medicine 2008; 22: 33-41.
