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Getting it right: improving end of life care for people living with liver disease

Lookup NU author(s): Dr Stuart Kendrick



Liver disease is a significant public health issue, and in 2010 it represented the fifth biggest cause of death after cancer, circulatory disease, respiratory disease and dementiaOf particular concern is that whilst the mortality for cancer, circulatory and respiratory disease is falling, deaths due to liver disease are relentlessly rising. It is therefore a significant issue for health care providers across all settings and also for commissioners of health care. The fluctuating course of liver disease makes identification and management of the end of life period challenging. Patients may benefit from both active medical management and palliative and supportive care. Integration of these processes allows active treatment of medical crises whilst preparing the patients, those close to them and the clinical team for the possibility of death. This will require a change in culture amongst some healthcare professionals and the ability to share acknowledgement that recovery is uncertain. The Department of Health’s End of Life Care Strategy described an end of life care pathway in six steps, to help provide excellent end of life care. This includes: 1. Discussions as end of life approaches – some prognostic indicators or clinical triggers for liver disease have been identified. 2. Assessment, care planning and review – there is a need to identify healthcare professionals who, with appropriate training, could discuss prognosis and future care preferences with patients who have advanced liver disease. 3. Co-ordination of care – an identified healthcare professional needs to coordinate care to minimise duplication and ensure information is shared promptly between healthcare providers. 4. High quality care in different settings – each patient will need identified contacts for palliative care advice and liver advice both in and out of hours. 5. Care in the last days of life – patients with advanced liver disease can have complex medical needs and may require frequent medical attention as death approaches, highlighting the need for care planning and review of preferred place of death as illness progresses. 6. Care after death – bereaved relatives of liver disease patients can have complex psycho-social needs both before and after the patient’s death needing support. The pathway also includes carer support, social care, spiritual care and access to end of life information as overarching considerations. This document takes the end of life care pathway as described in the End of Life Care Strategy and considers how it can be applied for patients with advanced liver disease.

Publication metadata

Author(s): Kendrick SFW, Kendrick EH

Publication type: Report

Publication status: Published

Series Title:

Year: 2013

Pages: 25

Print publication date: 01/02/2013

Source Publication Date: February 2013

Institution: NHS Liver Care and National End of Life Care Programme

Place Published: London