Most ICD Patients Prefer Device Deactivation If Very Ill

NEW HAVEN, CT--ore than two-thirds of patients with implantable cardioverter-defibrillators (ICDs) would want their device turned off under some circumstances, such as permanently impaired memory or having an incurable disease, suggests a survey analysis published online today in JAMA Internal Medicine [1].

A surprising number of the survey's respondents had a poor grasp of their device's potential benefits or its potential downsides, note the authors, led by Dr. John A Dodson (Yale University School of Medicine, New Haven, CT).

The survey's 95 patients (70% of those invited) were at least aged 50 (mean 71) and received an ICD not equipped for resynchronization therapy at one center from 2006 to 2009. At baseline, they had been implanted with their device a mean of four years previously, and 29% had received a shock.

The survey asked patients for their views on the device's potential benefits and harms; 32.6% responded there were no benefits or they were unknown, and some cited improvement of heart function or prevention of atrial fibrillation or stroke.

"Sixty participants [63%] could not name a potential harm," the group notes, although about 15% cited anxiety or other concerns about getting shocked.

"Participants were then read a standardized script providing the best current evidence regarding benefits and burdens of ICDs. Subsequently, participants were asked whether they would want their ICD deactivated in five scenarios representing key domains of health that strongly influence treatment preferences," they write. The scenarios included being permanently bedridden, permanent memory impairment, being a "burden to family members," under prolonged mechanical ventilation, and having an "advanced incurable disease."

Of the 95 respondents, 67 (70.5%) reported wanting ICD deactivation under at least one scenario; having an advanced incurable disease was the most popular cited scenario, at 61%, and being permanently bedridden was the least frequent, at 24%.

Dodson et al and the writers of an accompanying editorial [2] observe that prior studies, in contrast to the current study, suggested that most patients do not consider advanced illness as enough cause for ICD deactivation.

"The authors hypothesize that [their contrasting findings] may have been because their protocol involved an informational script. We agree and propose that the survey went further to create a process that helped patients consider and clarify their preferences. In effect, the survey may have become a successful decision-making intervention," write the editorialists, Drs. Dan D Matlock and Larry A Allen (University of Colorado School of Medicine, Aurora).

"Many patients with ICDs are unaware that it is possible to deactivate an ICD. We know that knowledge influences decisions. Thus, by introducing the topic of deactivation at the beginning of the survey, by exploring patient knowledge surrounding the pros and cons of ICDs, by clarifying their knowledge about deactivation, and then by reading and asking for a response to a series of five specific clinical scenarios about deactivation, they may have created a situation where postsurvey respondents were in a new place philosophically regarding ICD deactivation," according to Matlock and Allen.

"Recently, updated performance measures surrounding ICD implantation state that all eligible patients should receive 'counseling' to determine if an ICD is right for them. Dodson et al give evidence that at least a portion of that counseling should include preparation for a possible time in the future when a person may wish to deactivate their ICD."

SOURCE: theHeart.org