End of life care - Public Accounts Committee Contents

Conclusions and recommendations

1.  Most people express a preference to die at home but 60% die in an acute hospital, even when there is no clinical need for them to be there. People should have the right to die in the place of their choice. The End of Life Care Programme team should work with Primary Care Trusts and Strategic Health Authorities to develop the means to share information on patient preferences. In line with the Department's strategy, Trusts should agree plans with their Strategic Health Authorities for increasing the availability of community services, such as 24 hour district nursing, and access to advice and medication out of hours to help reduce the number of unnecessary hospital admissions. People in care homes should have equal access to these services.

2.  People who die in hospital are not always afforded the end of life care they deserve, including effective pain management and being treated with dignity and respect. Because someone is approaching the end of life it should not mean we abandon concern for their quality of life; end of life care should seek to sustain peoples' quality of life as a priority. Primary Care Trusts should seek assurance from the hospitals they commission services from that their staff have received sufficient education and training in end of life care. NHS hospitals that care for people who are approaching the end of their life, should employ a specialist palliative care team and promote the use of the Liverpool Care Pathway across relevant hospital wards.

3.  Lack of co-ordination between health and social care services mean that peoples' preferences for care are not always communicated effectively. People nearing the end of their life should be allocated a single health or social care professional contact to improve the co-ordination of care between services and providers. Primary Care Trusts should require providers to develop care plans for all those who wish to have one. The Department's planned survey of bereaved relatives should also include consideration of how a patient's care is co-ordinated across settings and between providers.

4.  There is a lack of education and training in basic end of life care. Improving the skills of health and social care staff should be a priority. In particular, the Department should work with the relevant professional bodies to put in place appropriate training. Primary Care Trusts and local authorities should commission hospices and voluntary groups to provide education for community and care home staff by, for example, building on the work already being undertaken by Marie Curie and St Christopher's Hospice. The new Care Quality Commission should provide assurance about the skills level of staff in health and social care organisations, as part of the new registration, inspection and monitoring regime.

5.  Primary Care Trusts have limited understanding of the local demand for and the cost-effectiveness of their commissioning of end of life care services. Trusts should use the commissioning guidance provided by the End of Life Care Programme and benchmarking information provided by the National Audit Office, to assist them in allocating resources more effectively. Trusts should also consider whether work similar to that done in Sheffield for the National Audit Office would improve their understanding of demand and supply and accordingly their commissioning of end of life care services.

6.  There is a risk that the additional £286 million committed to improving end of life care will not be used as intended. The Department should require Primary Care Trusts to account for how the additional funding is spent. Such information should be used to provide feedback to Trusts to allow them to benchmark their performance in improving service quality.

7.  There has been limited formal evaluation of the patient benefits associated with approaches intended to improve end of life care such as the Gold Standards Framework. The Department should commission clinical evaluations to determine whether use of such approaches results directly in higher quality care. The planned survey of bereaved relatives may be appropriate in the evaluation of the Liverpool Care Pathway and aspects of the Gold Standards Framework and Preferred Priorities for Care. Other approaches need to be developed to evaluate the experience of the increasing number of elderly people who live alone.

8.  Some 70% of independent hospices have only one year contracts with the NHS and for 97% the funding they receive does not cover fully the costs of the NHS services they provide. Primary Care Trusts should put in place three year rolling contracts to enable hospices to better plan their use of resources and develop their services. These contracts should cover the costs of the NHS services provided, including relevant overheads. Hospices should be commissioned to provide wider support, for example, training of care home staff and the provision of outreach services to improve the quality of care for more people in the last year of life.

9.  More people could be supported to die in their homes or in a care home if there was a more responsive system for providing the equipment and support services needed. The Department should review how requests for equipment and other assistance that support people to remain in their homes are handled, and identify ways of improving the speed and flexibility of the provision of such services. Primary Care Trusts should check that residents in care homes are provided with the same access to GPs and other health professionals as they would have if they were living in their own homes.

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Prepared 14 May 2009