The Relationship Between ICD Knowledge and Goals of Care in a Diverse Patient Population

Abstract

Background

Implantable cardioverter defibrillators (ICDs) can be lifesaving, but ICD shocks are also associated with worse quality of life and emotional distress for patients and their families, particularly near the end of life. Shared decision-making regarding deactivation is critical, yet it can be challenging due to limited patient understanding of their devices. Existing ICD educational materials often lack cultural and linguistic inclusivity, contributing to disparities in end-of-life care for Black and Hispanic patients.

Methods

Patients with active ICDs at a large, urban safety net hospital completed a pre-survey, then watched a 7- to 9-minute video on the functions and deactivation of ICDs. Afterward, patients were surveyed about their ICD knowledge, preferences regarding four hypothetical end-of-life scenarios, and personal experiences.

Results

Of 50 participants, 58% were non-Hispanic Black, 24% non-Hispanic White, and 18% Hispanic White. ICD knowledge improved significantly from 47.4% to 80.8% (P < 0.001). Knowledge improvement was similar for non-Hispanic Black and Hispanic White cohorts but lower for Hispanic White patients (P = 0.0001). Preferences for ICD deactivation changed for 72% of participants with hypothetical scenarios involving “being a caregiving burden” (P = 0.009) and “having no hope of recovery” (P = 0.001) showing the greatest increases in ICD deactivation preference.

Conclusions

Educational decision aids specific to a patient population can reduce disparities in ICD knowledge and promote informed decision-making, particularly in underserved populations. Improving patients’ understanding of their devices increased certainty and preference for ICD deactivation in end-of-life scenarios. Despite promising results, persistently lower knowledge in Hispanic White patients signals the need for tailored educational strategies.