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Summary

Adults :: End of life :: Summary

End of Life care is care that helps people with advanced, progressive, incurable illness and the elderly live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement.

It includes:[1][2]
• All adults with advanced, progressive, incurable illness (such as heart failure, advanced cancer, dementia, chronic pulmonary disease, stroke, chronic neurological conditions e.g. multiple sclerosis, motor neurone disease)
• Care provided in the last year of life (pain management and control of other symptoms)
• Provision of social, psychological, spiritual and practical support for patients and their carers
• Care provided in all settings (home, residential and nursing care homes, acute hospital, community hospitals, hospices, prisons and any other institutions)

People approaching end of life, often have complex needs, requiring support from different agencies in various locations. The National End of Life Care Strategy indicates that the majority of people would prefer to die at home. The strategy highlights the opportunities for health and social care systems working together to provide coordinated care and support, opportunity for patients to discuss their personal needs, choice of where to be cared for and to die, appropriate advice and support for carers at every stage. In 2010, there were over 2000 deaths in Medway, about 52% of these occurred in hospital, 23% at home and 37% in their usual place of residence. The national target is that by 2015, 60% of deaths will occur in people's usual place of residence.

Key issues and gaps


• The main barrier to the delivery of good quality end of life care is because people are not identified early enough to provide this care as they are approaching end of life.
• The majority of people in England would prefer to die at home, however lack of timely access to appropriate community services prevents more people dying in their place of choice. In Medway, over half of the deaths (52%) occur in hospital.
• In 2010/11, 421 people were on the General Practice Palliative Care register, implying poor identification of patients with end of life care needs especially non cancer patients.
• Lack of training and support for staff to ensure good end of life care is provided in all residential and care homes.
• There is no existing mechanism for identifying the needs, wishes and preferences for end of life care for people with dementia.
• The projected increase of the ageing population in Medway points to the future needs in developing skills in the community if admissions, especially emergency admissions, are to be avoided.
• Lack of information and data to inform decisions regarding the end of life care needs specific to BME groups, including spiritual and cultural needs.
• Co-ordination of care and communication between existing End of Life Care providers is inadequate.

Recommendations for Commissioning


• Encourage the use of the Gold Standard Framework's (GSF) Prognostic Indicator Guidance in primary care to ensure early identification of people approaching the end stages of their disease.
• Continued commitment is needed to provide high quality care to enable people in Medway to die in the place of their choice.
• Ensure workforce development (training and education) around the core competencies as outlined in the EOL Strategy: Assessment of needs and preferences, communication, advanced care planning and symptom management.
• Encourage joint working and shared resources across all providers, with an identified lead provider coordinating all services that support the EOL pathway.
• Support the development of a single point of access to services to improve the coordination of end of life services.
• Voluntary sector organisations should be involved appropriately, especially around issues relating to culture and religion.
• Disseminate information on integrated health and social care EOL teams to the public, to ensure timely access to continue care funding.
• Develop a shared IT system to facilitate a more streamlined service through data sharing.


References

[1]   The National Council for Palliative Care. Palliative Care Explained
[2]   Department of Health. National End of Life Strategy - promoting high quality care for all adults at the end of life 2008; Department of Health.