Abstract and Introduction
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 non-malignant 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.
There was a 400% increase in liver disease mortality in the UK between 1970 and 2010, with an ongoing rise in the last decade despite public health interventions.[1,2] Patients with end-stage liver disease report significant physical, psychological and social burdens, comparable to or even exceeding those of other advanced diseases.[3–5] Concerns have been raised about the quality of end-of-life care for patients with non-malignant liver disease. A national study of over 13 000 patients in England 2013–2015 reported a mean of 35 inpatient hospital days, 3.3 emergency admissions, and total cost of £21 113 per patient in the last year of life. 75% of deaths occurred in hospital, of which 97% occurred during unplanned hospital admissions. Large US-based population studies of patients during terminal hospitalisation for end-stage liver disease or decompensated cirrhosis report that 80% are admitted to ICU, with 56% experiencing mechanical ventilation, 16% haemodialysis initiation and 23% endoscopy.[7,8] Patients have limited and variable access to specialist palliative care (SPC), with North American population studies reporting rates from 4.5% to 30.3%.[7–11] When patients are referred to SPC, this largely occurs in the last days/weeks of life with less opportunity for support.[11,12] Smaller retrospective studies have highlighted low rates of do-not-attempt cardiopulmonary resuscitation and advance care planning documentation.[13,14] Patients report poor information-sharing about how their disease may progress, symptom management, quality of life and available support services.[4,15–17] Although liver healthcare professionals recognise these needs, they lack confidence and skills discussing them with patients.[17,18]
It is unclear how end-of-life care for patients with non-malignant liver disease compares with those with malignant liver disease, who have similar clinical features, such as decompensated liver failure, and are likely to interact with similar healthcare professionals and services. Furthermore, there is uncertainty as to how this care compares with that of patients with other non-malignant diseases, which share a similar less predictable disease trajectory than for those with malignant disease. The National Survey of Bereaved People (VOICES, Views of Informal Carers – Evaluation of Services) was a nationally representative cross-sectional survey conducted in England annually 2011–2015. It was commissioned by the Department of Health in 2011 and 2012, and NHS England from 2013, and administered by the Office of National Statistics. Its purpose was to inform and support national policy surrounding end-of-life care.[21,22] It previously reported that carers of decedents where liver disease was mentioned were less likely to rate the overall quality of end-of-life care as outstanding, in comparison to those with other diseases. However, the potential reasons for this are unclear without further analysis. 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 factors associated with the quality of end-of-life care for those with non-malignant liver disease.
Liver International. 2023;43(2):308-316. © 2023 Blackwell Publishing