Making Decisions About Implantable Cardioverter-Defibrillators from Implantation to End of Life: An Integrative Review of Patients’ Perspectives

Implantable cardioverter-defibrillators (ICDs) are used for patients at risk of sudden cardiac death. Patients considering ICD therapy are faced with several preference-sensitive decisions. Our aim was to explore patients’ ICD decision-making experiences from the decision to implant to the consideration of deactivation at end of life. We conducted an integrative review using Whittemore and Knafl’s five steps. MEDLINE, CINAHL, PubMed, PsycINFO, and the Cochrane library were searched from 2000 to 2013. Eligible studies focused on the patient response regarding ICD decision-making. Key themes were identified and used as a framework to discuss findings through the chronological course of decisions faced by these patients. Of 354 potential citations, 25 articles were included. The trajectory of key decision points was whether or not to initiate ICD therapy, replace the battery, and deactivate at end of life. Three common themes from patients’ perspectives were the influence of the patient–practitioner consultation on knowledge uptake, patients’ decision-making preference, and their desire to live. Patients faced with ICD-related decisions often misunderstood the functionality of their ICD, or overestimated its benefit. They also expressed mixed preferences for the desire to be involved in decisions. The decisions around ICDs are particularly difficult for patients given the life and death trade off. Clinicians involved in the care of these patients could better support them by verifying their understanding and eliciting their preferences. Using a shared decision-making approach has the potential to achieve improved patient outcomes.