Missed opportunities! End of life decision making and discussions in implantable cardioverter defibrillator recipients

Background: Recent guidelines highlight the need for clinician-patient discussions regarding end-of-life (EOL) choices prior to implantable cardioverter defibrillator (ICD) implantation. Health literacy could affect the quality and quantity of such discussions. Objective: Our objective was to determine the association of health literacy with experiences, attitudes, and knowledge of the ICD at EOL. Methods: In this cross-sectional study, we used validated instruments to measure health literacy and patient experiences, attitudes, and knowledge of the ICD at EOL. Results: Of the 240 ICD recipients, 76% of participants reported never having discussed the implications of a future withdrawal of defibrillation therapy with their healthcare provider. Increased odds of choosing to maintain defibrillation therapy were associated with female gender and lower ICD knowledge. Conclusions: From patients’ perspectives, EOL discussions with providers were minimal. Most patients hold misperceptions about ICD function that could interfere with optimal EOL care, particularly for those with inadequate health literacy.