Patients’ perception of implantable cardioverter defibrillator deactivation at the end of life

BACKGROUND: Individualised care at the end of life requires professional understanding of the patient's perception of implantable cardioverter defibrillator deactivation. AIM: The aim was to evaluate the evidence on patients' perception of implantable cardioverter defibrillator deactivation at end of life. DESIGN: Systematic narrative review of empirical studies was published during 2008-2014. DATA SOURCES: Data were collected from six databases, citations from relevant articles and expert recommendations. RESULTS: In all, 18 studies included with collective population of n = 5810. Concept mapping highlighted three themes: (1) Diverse preferences regarding discussion and deactivation. Deactivation was rarely discussed pre-implantation, with some studies demonstrating patients' reluctance to discuss implantable cardioverter defibrillator deactivation at any stage. Two studies found the majority of patients valued such discussions. Diversity was reflected in patients' willingness to deactivate, ranging from 12% (n = 9) in Irish cohort to 79% (n = 195) in Dutch study. (2) Ethical and legal considerations were predominant in Canadian and American literature as patients wanted to contribute but felt the decision should be a doctor's responsibility. Advance directives were uncommon in Europe, and where they existed the implantable cardioverter defibrillator was not mentioned. (3) 'Living in the now' was evident as despite deteriorating symptoms many patients maintained a positive outlook and anticipated surviving more than 10 years. Several studies asserted living longer was more important than quality of life. CONCLUSION: Patients regard the implantable cardioverter defibrillator as a complex and solely beneficial device, with little insight regarding its potential impact on a peaceful death. This review confirms the need for professionals to discuss with patients and families implantable cardioverter defibrillator functionality and deactivation at appropriate opportunities.