"I think some people just want to hold on to life at all costs," he said. "I think people equate it with giving up. For somebody who has fought with heart failure for a long time, after all these years, it's symbolic."
Dr. James Tulsky, chief of Duke Center for Palliative Care at Duke University, said that while ICDs have "tremendous" value for many patients, when someone reaches the end of life, goals for care may not match with the goal of having an ICD.
"If someone's dying from heart failure -- the inability to pump enough blood -- if they're dying that way, they are going to die anyway and the ICD will basically continue to shock the heart. It's clearly an undesired outcome and traumatic for the patient and everyone on the scene," Tulsky said.
Deactivating the defibrillator is a simple matter, said study author Dodson. A wand is held up to the device and programs it off. He said there is no surgery involved and no risk.
The research results carry important messages for patients, physicians and the health care system, he added.
"We need to make sure we're addressing ICD deactivation with patients, and determining the right time for addressing it. I'm not sure of the answer -- in the clinic, or once the patient is in the hospital? And what is the optimal way to counsel people on this? It should be investigated further," Dodson said.
The challenge, Bensimhon said, is that the current health care climate does not allow enough time for the discussions that ICD patients and doctors need to have about end-of-life care.
"These things are really complicated. To sit down in someone's room and explain to them takes a long time," he said. "Today, for example, I saw about 25 patients in clinic. You have 15 minutes with each. To explain to someone why they want their defibrillator turned off, that takes an hour."
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