Background Liver disease was the 2nd most common cause of death in working age adults in 2018 with deaths increasing four-fold in the last 4 decades. Patients with advanced disease are often unaware of their prognosis and report significant unaddressed symptoms. Over 70% of deaths occur in hospital but it is unclear how avoidable admissions are and whether this reflects patients‘ preferences. We aimed to compare bereaved carers’ perceptions of the quality of end of life care for patients with non-malignant liver disease (NMLD), malignant liver disease (MLD) and other non-malignant diseases (ONMD).
Methods We conducted an analysis of individual-level data from the VOICES National Bereavement Survey. This dataset included 110,311 completed surveys from bereaved carers, related to a stratified random sample of 246,763 deaths registered in England 2011–2015. We compared demographics, access to specialist palliative care (SPC), place of death and overall quality of care.
Results NMLD and MLD patients had greater levels of deprivation than ONMD patients. More patients with NMLD received home and hospice SPC compared with ONMD, but less than for MLD (11% vs. 7% vs. 55% respectively). A higher proportion of NMLD patients die in hospital than ONMD and MLD patients (74% vs. 53% vs. 38% respectively), despite their carers reporting 89% had expressed a preference to die at home. Comparing with ONMD and MLD, carers of NMLD patients were less likely to rate the overall quality of care in the last 3 months of life as outstanding or excellent.
Conclusions It is concerning that carers report the quality of end of life care for patients with non-malignant liver disease to be worse than with other diseases. Further research should focus on achieving integration of hepatology and community services, including SPC, to prevent unwanted hospital admissions and better facilitate care and death at home.
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