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End-of-life care snapshot shows progress

The most comprehensive assessment of end-of-life care in primary care ever conducted in England shows tangible advances, but also finds areas for considerable improvement.

The End of Life Care in Primary Care 2009 National Snapshot, commissioned by the NHS National End of Life Care Programme and facilitated by Omega, the National Association for End of Life Care, demonstrates the services and support available to people approaching the end of life.

It also provides a review of the progress of general practice in implementing the Department of Health's End of Life Care Strategy, helping doctors understand how best to meet the wishes of the dying and their families.

502 GP practices from nine of the 10 Strategic Health Authorities took part in the research programme. Practices used an online version of an improvement tool called After Death Analysis (ADA) to provide anonymous information about all deaths in February and March 2009. Records were provided for 4487 people, accounting for about half of all deaths in the 15 participating primary care trusts (PCTs) areas in that period.

The snapshot provides a baseline commissioners can use when making decisions about future service provision to enable the medical profession to meet the needs of the dying. Many people say that they want to live their final days in their own homes, rather than in hospital.

Results from the audit will inform decisions about planning future services. This will enable more people to remain at home until the very end of their lives. The snapshot will be used to develop further improvements and better access to care at both local and national levels.
Thirty per cent of practices said they had already implemented changes as a result of taking part in the snapshot. A number of other practices have acknowledged that the process of the audit has helped them tighten their focus on end of life care.

The research shows that real progress has been made in terms of using end of life tools - 60% of patients on the palliative care register who died at home had their care co-ordinated using a care pathway and 74% of patients on the palliative care register had a key worker. 

Claire Henry, director of the National End of Life Care Programme, said: "This is a very valuable piece of work that shows us there are positive changes happening at a local level. This should act as a catalyst for further improvements in end of life care and we would encourage all PCTs to use an audit tool like ADA."

The research shows key areas for improvement including the need to increase early identification of patients in the last year or so of life, especially patients with diagnoses other than cancer. Practices felt that about half of all deaths were not predictable yet the National Audit Office report published in 2008 suggested that less than 10% were completely unexpected. Just over a quarter, 27%, of patients were on the palliative care register, 75% of whom had a cancer diagnosis.

Making more patients and their families aware of advance care planning is another area for improvement. Only 43% of patients had their wishes and preferences recorded. Advance care planning has only been introduced widely in the last few years so this represents a big step forward.

Each participating PCT has received a report including a wide range of improvement tips for best practice and options for improvement at practice and PCT levels. The Department of Health recommends that all practices and PCTs have an action plan to improve care at the end of life. 
Gold Standards Framework: End-of-Life Care Programme

Your comments (terms and conditions apply):

"End-of-life care should mean exactly what it is intended for regardless of the patient's diagnosis. However there is clearly a deficit in the care/support for patients not presenting with a cancer diagnosis. Identification/communication and coordination of services is needed and this is an area that community nurses/district nurses could become involve in but they will need the skills/knowledge to drive this forward" - Lilette Denton, London