End Stage Liver Disease (ESLD) in the last 12 months of life - a retrospective case note review of end of life experience of patients known to a tertiary unit

Introduction Background Liver disease, a growing global public health problem, is 5th largest cause of death in the UK. Health policy primarily centres on prevention, with little focus on improving care in end stage liver disease (ESLD). Research into gaps in care provision or delivery in the last year of life is lacking. Method Method 30 ESLD patients known to a tertiary liver unit who died between April 2010 and September 2011 were purposefully sampled on diagnosis, gender, age and ethnicity. Retrospective case review extracted data on demographics, cause of ESLD, clinical symptoms, and service use in the last 12 months of life. Results Results Analysis showed a predominant diagnosis of alcoholic liver disease (33%); 67% male, 33% female, mean age 58 years. Hospital admissions were frequent for episodes of deterioration often precipitated by alcohol, infection and bleeding. Patients received intensive investigations and treatments to manage complex symptoms. Encephalopathy occurred in 70% of ALD patients, 80% received regular paracentesis. The ALD group experienced more generalised oedema; pain was the predominant symptom for the remainder. The mean length of stay was 40 days with an average of 4 admissions per patient in the last year of life. 57% were readmitted to hospital within 30 days of discharge but ALD patients were readmitted earlier. Discussion with patients about their understanding of disease and preferences for future care were limited. Communication about prognosis occurred with families, but late. 66% of patients were referred to specialist palliative care on average 3 days prior to death. 40% of patients documented as deteriorating were still receiving active treatment prior to death. 25/30 patients died in hospital, 3 at home and 2 in a hospice. Conclusion Conclusions Patients with ESLD have multiple complex symptoms requiring frequent intensive management in hospital which may act as an indicator that the end of life is approaching; however patients and their families were often unaware of the severity of the condition The illness trajectory makes it difficult to anticipate if someone is going to recover from an episode of deterioration. To explore this further, focus groups are being undertaken with health care professionals in the liver unit to understand their perspectives on needs and management in ESLD in the last year of life, to describe how care could be improved. Earlier supportive care is recommended to facilitate end of life care discussions with earlier referral to specialist palliative care for advice on symptom control