What is known about the care and support provided for an ageing population with lived experience of chronic viral hepatitis as they near end‐of‐life: A scoping review

Ageing with a chronic hepatitis B (HBV) or hepatitis C (HCV) infection is an emerging public health priority. For people living with chronic viral hepatitis, their disease progression into old age is both underpinned by their existing blood borne virus and the potential emergence of other infectious and non‐infectious conditions. These twinned pathways bring additional challenges to the care and support for people as they near end of life. This scoping review sought to examine what is known about the experiences of the end‐of‐life phase of an increasing population ageing with HBV and HCV in studies conducted in high‐income settings and published in peer reviewed literature (2010–2021). In interpreting this literature, we found that challenges in determining the end‐of life phase for people with lived experience of HBV or HCV are exacerbated by the conflation of aetiologies into a singular diagnosis of end‐stage liver disease. Studies overwhelmingly reported the clinical aspects of end‐of‐life care (i.e. prognosis assessment and symptom management) with less attention paid to educative aspects (i.e. advance care directives and surrogate decision makers, discussion of treatment options and determining goals of care). Psychosocial interventions (i.e. quality of life beyond symptom management, including emotional/spiritual support and family and bereavement support) received limited attention in the literature, though there was some recognition that psychosocial interventions should be part of end‐of‐life care provision. Given the focus on the prominent disease presentation of liver cirrhosis and/or end‐stage liver disease, the social and cultural dimensions of these infections have received less attention in the literature on end‐of‐life in the context of chronic viral hepatitis.