Decision-Making Experiences of Patients with Implantable Cardioverter Defibrillators

Background: When patients are not adequately engaged in decision making, they may be at risk of decision regret. Our objective was to explore patients’ perceptions of their decision-making experiences related to implantable cardioverter defibrillators (ICDs). Methods: Cross-sectional, mailed survey of 412 patients who received an ICD without cardiac resynchronization therapy for any indication between 2006 and 2009. Patients were asked about decision participation and decision regret. Results: A total of 295 patients with ICDs responded (72% response rate). Overall, 79% reported that they were as involved in the decision as they wanted. However, 28% reported that they were not told of the option of not getting an ICD and 37% did not remember being asked if they wanted an ICD. In total, 19% reported not wanting their ICD at the time of implantation. Those who did not want the ICD were younger (<65 years; 74% vs 43%, P < 0.001), had higher decision regret (31/100 vs 11/100, P < 0.001), and reported less participation in decision making (the doctor “totally” made the decision, 9% vs 3%; P < 0.001). Conclusions: A considerable number of ICD recipients recalled not wanting their ICD at the time of implantation. While these findings may be prone to recall bias, they likely identify opportunities to improve ICD decision making.