Quality of end-of-life care with non-malignant liver disease: Analysis of the VOICES National Survey of Bereaved People.

Abstract

Patients with liver disease struggle to access palliative care. We aimed to compare carers' perceptions of end-of-life care for decedents with non-malignant liver disease, malignant liver disease and other non-malignant diseases, and to identify associated factors in non-malignant liver disease. A retrospective analysis of individual-level data from the National Survey of Bereaved People 2011-2015. More decedents with non-malignant liver disease died in hospital than other diseases (76.9% vs. 40.9% vs. 50.2%, p< .001), despite 89% wishing to die at home. Fewer decedents received home/hospice specialist palliative care compared with those with malignant liver disease (10.0% vs. 54.6%, p< .001). Carers of decedents with non-malignant liver disease were less likely to rate overall end-of-life care quality as outstanding/excellent (29.3% vs. 43.9% vs. 42.3%, p< .001). For this group, poorer care was associated with younger (65-74 vs. 18-64 years, OR [odds ratio] 1.39, p= .01), more socially deprived decedents (OR .78, p= .02), and better care with greater social support (OR 1.82, p< .001) and community specialist palliative care involvement (OR 1.80, p< .001). There was no association between outstanding/excellent rating and underlying cause of non-malignant liver disease (alcohol-related vs. non-alcohol-related, p= .92) or place of death (hospital vs. non-hospital, p= .476). End-of-life care could be improved by integrating hepatology and community services, particularly specialist palliative care, and advance care planning to facilitate care and death (where desired) at home. However, death in hospital may be appropriate for those with non-malignant liver disease.