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Shocking ending: Implanted defibrillators can bring misery to final hours

Implanted defibrillators can save lives, shocking a heart beating wildly out of sync back to a regular rhythm. But they can also make a dying patient’s last hours agonizing, delivering shock after shock to a heart that is failing.

There’s a simple solution:  Advise patients who are nearing their last months, days, or hours to turn off the implanted cardioverter-defibrillator, or ICD – or at least explain what can happen if they don’t, a new report suggests.  This course seems especially clear when a patient is on death’s door and has signed orders telling medical personnel not to use heroic measures if heart or lungs stop working.

But, doctors, as it turns out, are often reluctant  to broach the subject with their patients, says Jim Russo, a registered nurse who works at the Department of Veterans Affairs Medical Center in New York City.  Russo searched for all the studies looking at the issue and then detailed the findings in a new report in the American Journal of Nursing.

Russo started looking into the subject of ICDs at the end of life when he read a horrifying report describing the tortured death of a hospice patient who “suffered 33 shocks as he lay dying in his wife’s arms.”

Then Russo heard from an old friend who’d had a similar experience watching her father die.  “My friend got quite confused,” he explains. “She didn’t understand why he was jumping around when it looked like he was no longer breathing. His body looked like it was jumping off the bed. It was very upsetting to watch.”

When Russo looked over his own patient files, he saw no evidence that anyone had been counseled about the possible effects of having an ICD turned on at the end of life.  

With 250,000 to 300,000 ICDs implanted in patients each year, Russo realized this might be a widespread problem. The devices are life-saving for patients who are at risk of sudden cardiac arrest because  their hearts can unpredictably spin out of rhythm, beating either too fast  or in an uncoordinated way. The battery-operated devices are designed to detect these abnormal rhythms and to reset the heart by delivering a strong jolt of electricity.

Unfortunately, in the case of patients who are near death, the heart can get out of sync and trigger shocks from the ICD as it attempts to restart a normal rhythm.  Once implanted, the devices can be turned off or reprogrammed by a specialist with a computer that is designed to work with the ICD. Generally neither the specialist or the computer would be available at a hospice.

One study cited by Russo shows that even among patients with a do-not-resuscitate order, or DNR, discussions between doctors and patients about what could happen with an ICD at the end of life occurred in fewer than 45 percent of cases.

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While it might be hard to suggest a dying patient turn off an ICD, it might make sense to include this discussion at the time the device was being implanted. But another study showed that only 4 percent of doctors were routinely discussing the issue with patients before the ICD was implanted.

Other studies showed that physicians were more comfortable talking about DNRs than they were about the possible impact of a turned-on ICD at the end of life. Many indicated that they would prefer that the patient -– or the patient’s family –- bring the subject up. “One cardiologist said she feared that talking about deactivation with patients would be like ‘shutting off hope,’” Russo noted.

Even if patients and families aren’t ready to completely turn off an ICD, the device can be reprogrammed so that it works more like a pacemaker, delivering tiny jolts of electricity rather than the high-voltage shock that completely recalibrates the heart.

Ultimately, Russo hopes that by writing the paper he’ll spur more discussions. “Regardless of a provider’s comfort level with the subject, patients have a right to be informed of all treatment options, including ICD deactivation,” he concluded.