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

Background: Guidelines for device-based therapy of cardiac rhythm abnormalities were updated in 2008 including discussions prior to implantation with implantable cardioverter defibrillator (ICD) recipients regarding end-of-life (EOL) choices. Objectives: To explore patients’ knowledge of the function of the ICD at EOL. Methods: ICD recipients from Central Kentucky and Melbourne, Australia completed the Experiences, Attitudes, and Knowledge of EOL. Results: Of the 240 ICD recipients, 76% reported that they have never had discussions with their health care provider regarding the withdrawal of defibrillation therapy. A total of 38% believed that turning off the ICD shocks was the same as active euthanasia and that disabling defibrillation therapy required surgical intervention; 37% believed that once defibrillation was disabled, it could not be enabled again. Conclusions: Adherence to guidelines regarding EOL discussions with ICD recipients was minimal from the patients' perspective. Most patients may hold alarming misperceptions that could interfere with optimal EOL care.