Introduction Liver disease is a growing global public health problem and the 5thlargest cause of death in the UK. Health policy for this patient group primarily centres on prevention, paying minimal attention to improving end of life care for those affected.
Aims To follow patients with cirrhosis in the last year of life, plotting healthcare use and identifying barriers to good end of life care.
Method Retrospective review of purposively selected case notes (30 cirrhotic patients) referred to a tertiary London liver unit. Pathways of care were modelled, by combining clinical data and service utilisation information extracted from medical notes, and qualitative focus groups/interviews with 14 liver health professionals, about barriers to good end of life care.
Results During the last 12 months of life medical crises often precipitated unplanned emergency admissions to hospital. Patients experienced high symptom burden and were repeatedly treated intensively to aid recovery. Although clinicians recognised that limited treatments and services exist to address patients’ problems, many continued to treat patients actively.
Opportunities to initiate palliative care were documented but not always acted upon. Discussions were rarely held with patients about their future wishes; care planning conversations occurred late in the patient trajectory and were more likely to occur with the patient’s family. Specialist palliative care referral occurred within the last few days of life.
Conclusion Clinicians have difficulties identifying when to initiate end of life care for patients with cirrhosis, when prognosis is uncertain and active treatment may afford a degree of short term recovery. Earlier integration of palliative care would facilitate care planning discussions and better inform patients and families of the choices available, in the knowledge they may be entering the dying phase.
Disclosure of interest None Declared.
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