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Implanted Defibrillator Patients Prefer Device Off if Very Ill: Survey
Date:1/29/2013

d a script to the participants that listed the benefits and burdens of ICDs according to current research. In the final portion of the survey, they asked whether participants would want their ICD deactivated in five different scenarios: if they were permanently unable to get out of bed; if they had permanent memory problems; if they were a burden to family members; if they required prolonged mechanical ventilation; or if they were suffering from an advanced incurable disease.

The survey takers responded using a scale of one ("definitely no") to five ("definitely yes"). Sixty-seven (71 percent) of the 95 participants wanted ICD deactivation in one or more of the scenarios, the study authors reported in their letter. Sixty-one percent wanted deactivation if they were suffering with an advanced incurable disease, and 24 percent wanted deactivation if they were to become permanently unable to get out of bed.

Dodson said their findings might be different from previous study results for several reasons.

"Generally those studies focused on younger patients with advanced heart failure. Younger patients tend to want more done," he said. The previous surveys might also "not get at their understanding of what an ICD does," he added.

"Our survey explained the purpose of their device. A sizable number of participants did not have a good understanding of the benefits or potential burdens of their ICD," Dodson said.

One heart expert called the new study "eye-opening."

"It really caught my eye how little some of these patients understand about these devices," said Dr. Dan Bensimhon, director of the Advanced Heart Failure Program at Cone Health in Greensboro, N.C. "We really have to do a better job making sure people understand what they are getting. That said, our quality of care in heart failure is, in part, measured by what percentage of our patients get these devices."

It also surprised Bensimhon that only 24 p
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