End-of-life care

• The previous government's first NHS End of Life Care Strategy, launched in July 2008, covered ‘all adults with advanced progressive illnesses and care in all settings’. The 10-year strategy was backed by an extra £268 million. The principal aims are to improve the quality of care for those approaching the end of their life and to give them greater choice about where they die. The NHS End of Life Care Strategy acknowledged that NHS and social care services in England are not currently meeting the needs of many people approaching the end of their life. According to the Healthcare Commission more than half the complaints about hospital care between July 2004 and 2006 related to end-of-life treatment. There is also often poor co-ordination between the different services involved in delivering treatment.
• Many people are not dying where they would choose. An NHS Confederation survey suggests 56 per cent of terminally ill people would prefer to die at home. But only 18 per cent achieve this, with 58 per cent dying in hospitals, 17 per cent  in care homes and 4 per cent in hospices.
•  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.
• Gomes and Higginson’s projections also show that although annual numbers of deaths fell by 8% from 1974 to 2003, they are expected to rise by 17% from 2012 to 2030. People will die increasingly at older ages, with the percentage of deaths among those aged 85 and expected to rise from 32% in 2003 to 44% in 2030 .
• The costs of caring for people at the end of their lives runs into billions of pounds. Care for the 27 per cent who die from cancer is around £1.8 billion in the last year of their life, averaging out at £14,236 per patient. However, according to the National Audit Office, spending by PCTs on palliative care varies widely, from £154 to more than £1,600 per patient.
• End-of-life care was one of the ‘key areas’ assessed by Lord Darzi’s NHS Next Stage Review. His final report in June 2008 recommended that people who were dying should be allowed to choose where they spent their remaining time and questioned whether hospital was the best place for those who were terminally ill.
• The main ways in which this will be achieved are through improved community services, rapid response nursing teams, developing specialist palliative outreach services, introducing quality standards against which PCTs and providers’ performance can be measured, and giving a more central role to carers. There will be a new focus on improving the skills of the vast number of generalist staff who are involved in end-of-life care but have little formal training.
• The strategy suggests that making services more effective could produce big savings in unnecessary hospital admissions and bed stays. An NAO study in one hospital suggested 40 per cent of those who died on the ward did not need to be in hospital. It calculated that small cuts in admissions and length of bed stays could make £104 million a year available for end-of-life care.
• Quality markers for end-of-life care have also been produced and will be supported by the development of end-of-life care outcome measures. An Information Guide for Commissioning End of Life Care is also available.
• Evidence from the Marie Curie Delivering Choice Programme suggests that this programme has achieved significant success in giving people greater choice about where they are cared for and die and has cut emergency admissions and hospital stays. Meanwhile the number of staff using models of care specifically designed for end-of-life care has risen sharply. They are now used by 75 per cent of GP practices and hospices and 85 per cent of acute hospitals. 

    ¹Gomes B, Higginson IJ. Where people die (1974-2030). Past trends, future projections and implications for care. Palliative Medicine 2008; 22: 33-41.