Implantable cardioverter-defibrillator recipient attitudes towards device deactivation: how much do patients want to know?

BACKGROUND: Patients receiving implantable cardioverter-defibrillators (ICDs) often have severely impaired left ventricular function and a poor prognosis. Having an ICD in situ effectively denies them the possibility of a quick, arrhythmic death. It is still unclear if and when the end of life and device deactivation should be discussed with patients and how much patients want to know prior to ICD implantation.
METHODS: Patients with an active ICD for chronic heart failure were interviewed regarding their attitude toward the ICD, their recollection of the consent procedure, and how they felt the end of life should be discussed with ICD patients (n = 54). Patients who had received ICD therapies (n = 25) were reviewed as a subgroup with extended questions regarding attitudes toward device deactivation.
RESULTS: Fifty-four patients were recruited. Most patients were not aware that the ICD could be deactivated. The vast majority of patients (84%) wanted to be involved in the deactivation decision; 40% felt this discussion should be prior to ICD implantation but others felt the discussion should only occur if the patient was terminally ill (16%) or in the last few days of life (5%).
CONCLUSION: Patients with ICDs are routinely counseled about the benefits of ICDs, but options for device deactivation are not well understood by patients. Most patients would like to be involved in deactivation decisions and we feel this should be discussed well in advance. ©2011, The Authors. Journal compilation ©2011 Wiley Periodicals, Inc.