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

Abstract

Background and Aims: Patients with liver disease struggle to access palliative care.We aimed to compare carers' perceptions of end-of-life care for decedents with nonmalignant liver disease, malignant liver disease and other non-malignant diseases, and to identify associated factors in non-malignant liver disease. Methods: A retrospective analysis of individual-level data from the National Survey of Bereaved People 2011-2015.Results: 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).Conclusions: 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.

The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesis

“…Similarly, in Chivinge et al's 27 service improvement project, a nurse‐led paracentesis service improved patient satisfaction and reduced complaints and waiting times. The perspectives of carers supporting people with advanced liver disease are also important to understanding care experiences and facilitating person‐centred palliative care 52 . Experiences are improved when there is a collaboration between hepatology, community services, and specialist palliative care, and there is advanced care planning 32,35,52 .…”

“…The perspectives of carers supporting people with advanced liver disease are also important to understanding care experiences and facilitating person-centred palliative care. 52 Experiences are improved when there is a collaboration between hepatology, community services, and specialist palliative care, and there is advanced care planning. 32,35,52 Researchers of other specialisms have also advocated person-centred care as a means of empowering people with longterm health conditions.…”

“…52 Experiences are improved when there is a collaboration between hepatology, community services, and specialist palliative care, and there is advanced care planning. 32,35,52 Researchers of other specialisms have also advocated person-centred care as a means of empowering people with longterm health conditions. For example, a Finnish study with people who have type 2 diabetes found that person-centred care was associated with higher empowerment levels.…”

Embedding Public Involvement in a PhD Research Project With People Affected by Advanced Liver Disease

“…Access to palliative (supportive) and end‐of‐life care for people with advanced liver disease is variable, with inequalities apparent [8]. There has been little focus on the experiences of care received by people with advanced liver disease and it has been recommended that more research is needed to explore the perspectives of people receiving care [9].…”