There is growing recognition that people with advanced liver disease (ALD) have limited access to palliative care, despite a high symptom, psychological and social burden. Many have little opportunity to do end-of-life planning and some are referred to palliative care services as late as two days before death
Early hospice referral for patients with ALD and their carers seems at best a national aspiration rather than standard best practice.
St Luke’s Hospice Basildon, has devised an innovative and unique pathway alongside the acute liver services of Basildon Hospital. This allows patients and their carers with ALD, to have timely access to a range of hospice services and interventions whilst still receiving input and interventions from the acute liver services. Allowing a parallel planning approach to advanced liver disease.
This project has run a successful pilot and attracted significant national interest both in palliative care and hepatology forums. This has resulted in a significant award from The Health Foundation to St Luke’s Hospice to develop the work.
This collaborative and multi-disciplinary working between St Luke’s Hospice and Basildon liver team seems so far unparalleled on a national level, despite calls to meet this challenging and complex area of need.
The current study is now at its mid-point and early data show that patients and their carers with ALD have complex and unmet needs. Early emergent themes and data are showing the potential for the model to improve quality of life and compliance; to enable more patients to be considered for transplantation and improved and more cost effective paracentesis services when managed by St Luke’s Hospice.
The project is due for completion in February 2017 and highlights an innovative approach by St Luke’s for patients and their carers with non-malignant disease.
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