End-of-life care and support for an ageing cohort of people with lived experience of chronic viral hepatitis
A blog post written by Kerryn Drysdale
Ageing and approaching end-of-life is a difficult time for most people, but when we think about the additional challenges that people face when living with or affected by chronic blood borne viruses, such as hepatitis and HIV, those difficulties can be exacerbated exponentially. Throw in a lack of general awareness within the aged care sector together with substantial social stigma around these infections, then we have a situation where these people’s unique needs may not be met as they approach end-of-life. Researchers at the Centre for Social Research in Health received funding from the Department of Health to explore and assess the growing age and consequent health and social service needs of older people living with chronic hepatitis B, chronic hepatitis C or HIV among priority populations in Australia.
Recent developments in direct-acting antivirals offer a high likelihood of a cure from hepatitis C, and biomedical advancements in antiretrovirals have meant that HIV is no longer a death sentence for those diagnosed and who commence treatment. While there is no cure for hepatitis B, ongoing monitoring and treatment, when required, can reduce the risk of liver disease. We already know that for older people living with chronic hepatitis B, chronic hepatitis C or HIV, disease progression is underpinned by their existing virus along with the emergence of other infectious and non-infectious conditions that could bring additional challenges. At the same time, behavioural, social and structural factors also impede equity in health outcomes, including stigma around these infections and the practices associated with them that may increase the risk of transmission. The complex relationship between bio-physical, behavioural, lifestyle, social, and structural factors reinforce the need for a multifaceted approach incorporating care, treatment and support of people living with these infectious conditions. So, when faced with an ageing population who have experience of these blood borne viruses, how do we effectively manage their progression into the late stages of life?
While there is burgeoning literature on people living with HIV and their aged care needs, there is very little on viral hepatitis. Our first task was to conduct a scoping review of the available literature to synthesise the main findings and locate the gaps in knowledge so as to better understand these needs. [1] What we found may not be surprising to those who work in the palliative care space, but our findings do point to a lack of comprehensive wrap-around care specific to hepatitis. We found that overwhelmingly, end-stage liver disease was used as proxy for hepatitis related aetiologies and so clinical management focussed on that disease, while the other valuable components of palliative care, such as educative aspects (i.e. making decisions and taking actions for setting up advance care directives and appointing surrogate decision makers, discussing treatment options and determining goals of care) and psychosocial interventions (i.e. quality of life beyond symptom management, including emotional/spiritual support, and family and bereavement support) received limited attention. Thus, the social and cultural dimensions of these infections have received less attention in the literature on end-of-life. What constitutes ‘end of life’ in the context of ageing for these populations is equally difficult to determine. Generally, end-of-life determinations and palliative care clinical referrals are based on disease progressions that have definitive markers (e.g. a quick or a prolonged, but overall consistent, decline of physical function and quality of life where treatment options are no longer life sustaining). Hepatitis B and hepatitis C viral infections may indeed confound this determination, given the curative potential of treatment and/or liver transplant.
So, what can we do better? To start, stigma and discrimination are key factors in patient experiences as they near end-of-life, which present significant concerns around health equity. Indeed, the number of proxies to describe identities and lifestyles associated with hepatitis (injecting drug use, sex between men and so on) should be a cause of concern for policy makers and clinicians alike. Second, there are opportunities to consider not only the relationship between palliative care and oncology, but other relationships between disciplines and specialities because of the intersecting multimorbidity that may be present. Finally, person-centred care could benefit from a consideration of the unique experiences of people with lived experience of viral hepatitis where ageing and dying lies on a continuum, rather than a single transition point.
References
- Drysdale K, Rance J, Cama E, Treloar C, Mao L. 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. Health Soc Care Community. 2022 Oct 19. doi: 10.1111/hsc.14066. Epub ahead of print. PMID: 36259240.
Read more here:
Dr Kerryn Drysdale
Research Fellow
Centre for Social Research in Health, UNSW Sydney
(on behalf of co-investigators Associate Professor Limin Mao, Dr Jake Rance, Ms Elena Cama and Professor Carla Treloar)