Background National work identifies that people with liver disease are less likely to receive palliative care, more likely to die in hospital, less likely to be satisfied with co-ordination of care (Kendrick, 2013) and more likely to be young, deprived and socially isolated (Public Health England – Liver disease profiles). Locally palliative care and hepatology services were struggling to connect.
Aims To audit local hospice and hospital outcomes for people with liver disease against the 2013 NHS report ‘Getting it right: improving end of life care for liver disease’ (Kendrick, 2013).
Methods Review of notes of people with a primary diagnosis of liver disease referred to the local hospice services or hospital palliative care team, 2015–2017.
Results 16 hospice and 50 hospital referrals made.
Age: Hospice: 41–83 years, mean 62.5. Hospital: 39–80 years, mean 54.
63% of hospice referrals came from the hospital palliative care team; none from hepatologists. 40% of hospital PCT referrals came from nurses; 20% from hepatologists.
Reasons: Multiple for each service. Symptom control was most frequently cited: 81% vs. 60% respectively.
Prognostic indicators: 44% of hospice referrals included no indicators. No hospital referrals included indicators.
Mean duration of care: 39 days under hospice services, four days under the hospital PCT.
Outcomes Hospice referrals: 16 deaths; 5 (31%) in hospital (though four were never discharged). Hospital referrals: 8/10 (80%) with alcoholic liver disease vs 8/19 (42%) other diagnosis died in hospital. 36 hospital patients achieved advance care planning.
Conclusions Our audit identified high symptom burden, low hepatology input and late referrals to specialist palliative care. It has helped us to understand each others caseloads/roles, the burden of the disease for patients and the need to collaborate for advance care planning. We will now be using/sharing prognostic indicators (Gold Standards Framework) for and at referral, and are working together for a dedicated advanced disease hepatology clinic or CNS service.
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