Abstract 11135: Missed Opportunities! End-Of-Life Discussions and Implantable Cardioverter Defibrillator Recipients

Abstract

Introduction: Guidelines for device based therapy of cardiac rhythm abnormalities were updated by the ACC/AHA/HRS in 2008 to include discussions beginning at the time of implantation with implantable cardioverter defibrillator (ICD) recipients regarding end-of-life (EOL) choices and withdrawal of defibrillation therapy. The level of adherence to this guideline from the patients’ perspective is unknown. Methods: The purpose of this study was to determine (1) ICD patients’ perspectives about discussions held with their providers focused on EOL choices regarding the withdrawal of defibrillation therapy and (2) ICD recipients’ level of knowledge regarding ICD function at EOL. ICD recipients from outpatient cardiology clinics associated with an academic health center, a community hospital, or a suburban hospital located in Central Kentucky completed the EOL-ICD questionnaire. The EOL-ICD measures three domains: experiences of EOL issues, attitudes about EOL discussions and actions, and knowledge of the ICD in relation to EOL issues. This instrument is valid and reliable in the ICD population. Results: Of the 115 ICD recipients (mean age = 63 yrs., 22% non-white, 24% non-partnered, with a mean educational level = 13.6 yrs., a mean duration of therapy = 5yrs., and 34% reporting one or more ICD shocks) 71% reported that they have never had discussions with their health care provider regarding what withdrawal of defibrillation therapy implies. A total of 44% believed that turning off the ICD shocks was the same as active euthanasia and that to disable defibrillation therapy required surgical intervention; 43% believed that once defibrillation was disabled it could not be enabled again; and 24% of recipients believed that the heart would stop beating due to the withdrawal of defibrillation therapy. Conclusion: Adherence to the guidelines regarding EOL discussions with ICD recipients was minimal from the patients' perspective. Despite national and international guideline recommendations to discuss EOL issues with ICD recipients beginning at implant, most patients report not having these discussions and many hold alarming misperceptions that could interfere with optimal EOL care.