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Summary

Adults :: End of life :: Summary

End-of-life care helps people with advanced, progressive, incurable illness and the elderly live as well as possible until they die. It includes care provided in the last year of life, e.g. pain management and control of other symptoms, as well as provision of social, psychological, spiritual and practical support for patients and their carers. 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. Care can be provided in all settings (home, residential and nursing care homes, acute hospital, community hospitals, hospices, prisons and any other institutions).[1][2]

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.[2] In 2016, there were 2,142 deaths in Medway, of which 47.6% (1020) occurred in hospital, 24.7% (529) at home and 10.4% (222) in care homes. The national strategy highlights the opportunities for health and social care systems to work 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; and appropriate advice and support for carers at every stage.


Key issues and gaps


• In 2015/16, only 554 people in Medway were on the General Practice palliative care register, implying poor identification of patients with end-of-life care. Identification is known to be worse in non-cancer patients.
• The 'My Wishes' register is an important secure record of how patients wish to be cared for as they approach the end of their life, but it is not being used consistently.
• 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, nearly half of the deaths (48%) occur in hospital.
• There is no existing mechanism for identifying the needs, wishes and preferences for end-of-life care for people with learning disabilities and dementia.
• In Medway, it is estimated that the number of people aged 85 or above will rise by 17% from 2015 to 2020.The projected increase of the ageing population in Medway points to the future needs in developing skills in the community if admissions, in particular emergency admissions, are to be avoided.
• Patients and carers that come under the specialist palliative care service receive pre-bereavement but other end-of-life care patients do not receive this service.
• There is a lack of training and support for staff to ensure good end-of-life care is provided in all residential and care homes.
• There is a lack of information and data to inform decisions regarding the end-of-life care needs specific to black and minority ethnic groups, including spiritual and cultural needs.
• Coordination of care and communication between existing end-of-life care providers is inadequate and needs to be addressed.


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.
• Medway CCG needs to encourage the GP/primary care team to work closely with other professionals in hospitals, hospices and specialist teams to help to provide the highest standard of care possible for patients and their families.
• Given the generally ageing population and the likely increase over time in percentage of people over the age of 75 from a Black, Asian and minority ethnic (BAME) background, it is recommended that Medway CCG looks at their demographic projections and works accordingly with their clinicians, community groups and SPCS to develop, fund and evaluate appropriate, cost-effective services.
• A gap has been identified in pre-bereavement in Medway. Commissioners should consider the provision of the service through a suitable provider or developing alternative models for providing this service.
• 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 End-of-Life 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 end-of-life 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 end-of-life 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;