Missed Opportunities for EOL Decision-Making Discussions in ICD Recipients

Study Questions:

What is the association of patient health literacy with experiences, attitudes, and knowledge in implantable cardioverter-defibrillator (ICD) decision-making at end of life (EOL)?


A cross-sectional design was employed to examine patients’ experiences and perspectives of conversations with healthcare providers regarding ICD generator replacement and maintenance of defibrillation therapy prior to implantation. Completed data were analyzed on experiences, attitudes, and knowledge of ICD at EOL, health literacy, and anxiety and depressive symptoms from 240 patients enrolled from two university cardiac clinics in the United States and Australia.


Patients with inadequate health literacy were significantly older, more often ethnic minorities, less likely to have had ICD generator replacement, and more likely to have never discussed with their healthcare provider the potential needs for ICD generator change and withdrawal of defibrillation therapy. ICD knowledge was low in the entire sample, with 76% of patients reporting they had never discussed the implications of a future withdrawal of defibrillation therapy with their healthcare provider. Nearly 40% of the sample thought withdrawal of defibrillation therapy was equivalent to active euthanasia and that therapy could be turned off without their knowledge. Symptoms of anxiety, health literacy, and a positive history of ICD-delivered shocks were significant predictors of patient choice to receive generator replacement in the context of terminal illness. Women chose to maintain defibrillation therapy nearly two and a half times more often than men. Health literacy was the sole predictor of decreased odds for maintaining defibrillation therapy; for each one-unit increase in ICD knowledge scores, the odds of choosing to maintain defibrillation therapy decreased by 11.4% (p = 0.038).


Few patients reported having discussions with healthcare providers on EOL defibrillation therapy decisions prior to ICD implantation. Lack of a basic functional knowledge about ICDs might interfere with delivering optimal EOL care. Inadequate health literacy can be a powerful predictor of EOL choices for generator replacement and maintenance of defibrillation therapy, pointing to the potential need for advanced decision-making that addresses ICD-specific advanced directives.


Findings provide new insights on what has become known as the 6th vital sign, health literacy, and how health literacy levels can impact patient perceptions of complex care technologies, such as ICD therapy. This study highlights the importance of healthcare provider and patient discussions on ICD functions that patients must understand to make informed decisions concerning ICD therapy at EOL. As the number of ICD recipients increases and technology advances, further research is needed to better understand the impact of health literacy on patient perceptions and understanding relative to EOL decision-making.

Clinical Topics: Arrhythmias and Clinical EP, Implantable Devices, EP Basic Science, SCD/Ventricular Arrhythmias

Keywords: Health Literacy, Defibrillators, Implantable, Electric Countershock, Decision Making, Health Personnel, Depression, Anxiety, Terminal Care, Patient Preference

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