Barriers and Strategies to Effective Serious Illness Communication for Patients with End-Stage Liver Disease in the Intensive Care Setting

Abstract

Background: Patients with end-stage liver disease (ESLD) often require Intensive Care Unit (ICU) admission during the disease trajectory, but aggressive medical treatment has not resulted in increased quality of life for patients or caregivers. Methods: This narrative review synthesizes relevant data thematically exploring the current state of serious illness communication in the ICU with identification of barriers and potential strategies to improve performance. We provide a conceptual model underscoring the importance of providing comprehensible disease and prognosis knowledge, eliciting patient values and aligning these values with available goals of care options through a series of discussions. Achieving effective serious illness communication supports the delivery of goal concordant care (care aligned with the patient's stated values) and improved quality of life. Results: General barriers to effective serious illness communication include lack of outpatient serious illness communication discussions; formalized provider training, literacy and culturally appropriate patient-directed serious illness communication tools; and unoptimized electronic health records. ESLD-specific barriers to effective serious illness communication include stigma, discussing the uncertainty of prognosis and provider discomfort with serious illness communication. Evidence-based strategies to address general barriers include using the Ask-Tell-Ask communication framework; clinician training to discuss patients’ goals and expectations; PREPARE for Your Care literacy and culturally appropriate written and online tools for patients, caregivers, and clinicians; and standardization of documentation in the electronic health record. Evidence-based strategies to address ESLD-specific barriers include practicing with empathy; using the “Best-Case, Worst Case” prognostic framework; and developing interdisciplinary solutions in the ICU. Conclusion: Improving clinician training, providing patients and caregivers easy-to-understand communication tools, standardizing EHR documentation, and improving interdisciplinary communication, including palliative care, may increase goal concordant care and quality of life for critically ill patients with ESLD.