Palliative care & chronic liver disease: barriers to care, health disparities & the role of health literacy.

Abstract

Cirrhosis continues to excel as one of the leading causes of death worldwide, characterized by an often tumultuous and unpredictable disease course with progressive decline accompanied by severe symptom burden, impacted quality of life (QOL), high healthcare expenditures, and caregiver burn out. This patient population often has concurrent concerns related to their underlying disease such as substance use disorders, mental health, or socioeconomic factors that may complicate their management. Palliative care (PC) and a multidisciplinary team approach can make substantial impacts through additional psychosocial support and symptom management for improved QOL. Barriers to timely PC intervention include lack of education and resources, poor health literacy, and social and health inequities. Lack of education and understanding from healthcare providers and healthcare systems as well as misunderstanding at individual, community, and societal levels are persistent problems that can perpetuate incorrect information and create confusion around PC involvement. Poor health literacy, considered a global public health concern, has become a priority in addressing chronic disease management. It is a known barrier to patient engagement in shared decision making and has been associated with poor health outcomes in PC; thus, contributing to health inequities in vulnerable and disadvantaged patient populations. Health literacy development that can lead to sustainable optimal health outcomes will require understanding the complex, multi-dimensionality of health literacy of each population with its strengths and limitations that reflect real-world settings and experiences. With this, the chronic liver disease (CLD) patient population faces unique challenges that will require a robust partnership between healthcare providers, healthcare systems, patients, local communities, stakeholders and leadership, in order to enhance our understanding of the challenges faced by these vulnerable populations and in turn address gaps and barriers to ensure comprehensive, holistic, and equitable health care models of patient-centered care.