End of life care - Public Accounts Committee Contents

1  The current place and quality of end of life care

1. End of life care services aim to support those with advanced, progressive, incurable illness to live as well as possible until they die. In England, approximately half a million people die each year, almost two-thirds of whom are aged over 75 years. Around three quarters of deaths are 'predictable' and follow a period of chronic illness, such as cancer or heart disease, where people may need access to end of life care.[2]

2. The majority of people (between 56% and 74%) express a preference to be cared for and die in their own home, which for some will be a care home, and to avoid dying in an acute hospital.[3] The proportion of people expressing a preference to die at home has, however, been shown to change as death approaches. This can be because they require more extensive support, such as that provided by a hospice, and do not wish to be a burden to their family, or because they do not wish to die alone. Many people are admitted to hospital for emergency treatment of symptom management and, for some, hospital is their preferred place of care. Some people, however, remain on a medical or surgical ward when they no longer have a clinical need to be there. For those whose preference is not to return home or for whom home care is no longer feasible, an alternative is intermediate care, provided for example by a community hospital. Research evidence shows that people are generally very satisfied with the end of life care they receive in community hospitals.[4]

3. In 2006, only 35% of people died at home or in a care home and 58% of deaths occurred in an acute hospital, ranging from 46% to 77% across Primary Care Trusts.[5] Place of death varies by age, with care home death rates highest for those over 85.[6] There is also considerable variation by condition, with cancer patients more likely to die at home or in a hospice (Figure 1). The Department for Health (the Department) attributes this largely to the fact that specialist palliative care services and the modern hospice movement, started by Dame Cicely Saunders 40 years ago, has traditionally focused on cancer. More recently, however, there has been an increase in the proportion of patients accessing specialist palliative care services who have other conditions, such as renal diseases.[7]

4. Although the Department consulted a range of different representative groups to establish the impact of cultural factors on preferences for end of life care during the development its end of life care strategy, it found relatively few such cultural differences in people's preferences as they approach death. There are, however, considerable differences in how people or their relatives expect to be cared for immediately thereafter and the Department acknowledged the importance of observing these differences and meeting the needs of patients and their families.[8]

Figure 1: Place of death varies by condition

Source: National Audit Office analysis of 2006 Mortality Statistics for England

5. As people approach the end of their life, they often require a complex mix of health and social care services.[9] Co-ordination between health and social care services in relation to the planning, delivery and monitoring of end of life care is, however, generally poor and people approaching the end of their life often encounter problems, particularly when they are being transferred between health and social care providers. For example, residential homes, especially those without qualified nursing staff, often feel ill-equipped to care for people as they near the final stages of life and end up sending them to hospital or refuse to take residents back after a hospital admission, for example, if the patient is no longer weight-bearing.[10]

6. Current processes for securing home care in the community lack efficiency and flexibility, and there can be delays and difficulties in obtaining and completing the necessary forms at a time when people may have only days or weeks to live.[11] A lack of care planning and prompt access to services in the community can lead to some people approaching the end of their life being unnecessarily admitted to an acute hospital or to delays to the discharge of people who have no medical need to remain in hospital.[12] Information on patient preferences is also not always captured or shared effectively between the different agencies involved in delivering care.[13] The Department acknowledged that end of life care requires good organisation and strategic planning, and for Primary Care Trusts and local authorities and also the voluntary sector to work together in partnership, but that in many cases this has not been happening.[14]

7. Work carried out by the Healthcare Commission has identified that those people who die in acute hospitals are not always afforded the dignity and respect they deserve. Common issues include poor support for basic comfort; a lack of privacy for the patient and their family; poor communication by staff; and staff recognising too late that somebody is at the end of their life. Focus groups carried out for the National Audit Office identified examples where the standard of hospital care was below what had been expected, causing unnecessary stress for people approaching the end of their life and for those caring for them.[15]

8. The Department acknowledged the need to improve the standard of acute hospital care for people at the end of their life, but emphasised that it is possible for those who want, or have a medical need, to be in hospital at the end of their life to have a good death.[16] It is seeking to improve the standard of acute hospital care for people at the end of their life by continuing to encourage uptake of the Liverpool Care Pathway tool.[17] It is also promoting the development of specialist palliative care teams, and taking forward work to redevelop the hospital environment and improve patient privacy.[18]

9. The Department welcomed the findings of a review of patient records in Sheffield carried out for the National Audit Office, which explored the potential for changes in care pathways for people at the end of life and the alternatives to patients dying in hospital.[19] The review found that the proportion of deaths in acute hospital could have been reduced from 50% to 31%, with a corresponding increase in deaths in other settings (Figure 2). It also found that the proportion of residents dying in care homes could have been increased from 61% to 80% if more support and advice had been provided to those homes.[20]

10. Reducing unnecessary use of acute hospitals by people at the end of their life could make additional resources available for expenditure on end of life care. At least 40% of people who died in an acute hospital in the Sheffield in October 2007 did not have medical needs which required them to be admitted. These patients used 1,500 bed days, costing approximately £375,000, with nearly a quarter of them having been in hospital for over a month. Over the course of a full year, this could make around £4.5 million available for investment in community services.[21]

11. Economic modelling work by the National Audit Office estimates that, nationally, the cost of caring for cancer patients (who account for 27% of all deaths) in the 12 months prior to death was £1.8 billion and that a 10% reduction in the number of emergency admissions and a reduction of the average length of stay per admission of three days, would release £104 million for redistribution to other end of life care services.[22]

Figure 2: Potential to increase the number of people who die outside of acute hospital

Source: Analysis by the Balance of Care Group on behalf of the National Audit Office

12. Work carried out by Marie Curie through its Delivering Choice Programme demonstrates that reductions of this kind are possible if appropriate community services for end of life care are put in place. For example, in Lincolnshire, the Programme helped avoid 500 admissions in a year, it showed that investment in community services can decrease the number of hospital deaths and reduce the number of admissions to hospital per patient as they approach the end of their life.[23] The Delivering Choice Programme is one of a number of examples of the modern hospice movement and the voluntary sector working with NHS and social care services to improve services in the community for people approaching the end of their life.[24]

2   C&AG's Report, para 1.1 Back

3   Qq 4, 8, 40; C&AG's Report, para 2.3 Back

4   Qq 4, 8, 37-40; C&AG's Report, para 2.3 Back

5   Q 4; C&AG's Report, paras 2.3-2.4; Figure 3 Back

6   C&AG's Report, para 2.2 Back

7   Q 11 Back

8   Qq 61, 76 Back

9   Q 63 Back

10   Qq 40, 65; C&AG's Report, para 18 Back

11   Qq 69-71 Back

12   Qq 4, 105-106 Back

13   C&AG's Report, para 9 Back

14   Qq 23, 65 Back

15   Q 10; C&AG's Report, paras 12, 2.8 Back

16   Qq 4, 38 Back

17   The Liverpool Care Pathway is one of three tools recommended by the National Institute of Clinical Excellence to improve delivery of end of life care. The other two tools are the Gold Standard Framework and the Preferred Priorities of Care. Back

18   Q 10 Back

19   Qq 8-9; C&AG's Report; Appendix 2 Back

20   Q 40; C&AG's Report, paras 3.12-3.13; Figures 14-15 Back

21   Qq 8-9; C&AG's Report, para 3.14 Back

22   Qq 5, 107; C&AG's Report, paras 3.23-3.27; Appendix 3; Figures 24-25 Back

23   Qq 4, 107-109; C&AG's Report, Appendix 6; Example 5 Back

24   Qq 4, 65 Back

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