People who have implanted heart devices rarely have advance directives indicating whether they want them deactivated near the end of life, according to a new study. So the decision often has to be made by loved ones.

So-called cardiovascular implantable electronic devices (CIEDs) are used to treat arrhythmias, conditions in which the heart beats too fast, too slow or in an irregular pattern.

Pacemakers are the most basic type of CIED. They use electrical pulses to keep the heart beating regularly.

Implantable cardioverter defibrillators (ICDs) function as pacemakers, too. But they are also able to deliver Electrical shocks to the heart whenever a dangerous rhythm is detected.

Hundreds of thousands of Americans have an implanted device that keeps their heart beating properly, even when they are extremely ill and at the end of life.

Some doctors feel these devices prolong life unnaturally. And ICDs send shocks to the heart in the final days, which is uncomfortable for patients and frightening for loved ones.

“Because of the increasing prevalence of patients with these devices, we were encountering an increasing number of patients approaching the end of life (e.g., due to cancer) requesting that the device be ‘turned off’ so that the device doesn’t interfere with a peaceful or natural death from unhelpful and uncomfortable ICD shocks,” Dr. Paul Mueller told Reuters Health in an email.

Mueller, the study’s senior author, is chair of the Division of General Internal Medicine at the Mayo Clinic in Rochester, Minnesota.

He and his colleagues examined the medical records of 150 patients who had CIEDs deactivated between 2008 and 2012. They didn’t contact any of the patients or their families.

The patients were in their late 70s, on average, when their devices were turned off. All but one had a poor or terminal prognosis.

At the time the study was completed, 146 of the patients had died. Almost half of deaths were due to heart problems. Other causes included neurological disease, cancer, organ failure and lung disease.

Sixty-four patients had palliative medicine consultations, and 44 of those included a discussion about managing CIEDs.

Although 57 percent of the patients had advance directives in their medical records, only one mentioned possible deactivation of a heart device.

Ultimately, 51 percent of requests to turn off CIEDs were made by surrogate decision makers instead of patients, according to findings published in JAMA Internal Medicine.

Mueller believes people should have advance directives that address deactivation in case they can’t express their desires themselves when they are very sick.

“Otherwise, such decisions must be made by the patient’s surrogate, who may not know what the patient would have wanted, which is often the case,” he said. “This situation can be burdensome for surrogates and having an advance directive available can lift/ease this burden of decision-making.”

Patients with CIEDs can be in charge of the decision to deactivate the device by talking with doctors, family and caregivers, and by including the decision in an advance directive.

“People who have an ICD need to know that they are empowered,” Dr. Daniel Matlock told Reuters Health in an email.

Matlock is with the Division of General Internal Medicine at the University of Colorado School of Medicine in Aurora. He co-wrote a commentary published with the study.

“While the ICD is a life-saving therapy, it is absolutely their right to have it turned off if and when they get to a point in life where the life-saving benefits of the therapy are no longer consistent with their goals,” Matlock said.

Mueller also recommended those patients have a palliative medicine consultation.

“As our population ages and cardiac devices grow ever more common, the quality of these conversations will vastly improve the quality of our patients’ lives - and of their deaths,” write Dr. Sunita Puri and Katy Butler, an independent journalist, in an additional linked commentary.

Puri is with the Hospice and Palliative Medicine program at the Stanford University School of Medicine in Palo Alto, California.

SOURCES: JAMA Internal Medicine, online November 25, 2013.

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