Heart devices can be turned off near end of life

It is legal and ethical to honor patient requests to deactivate implanted cardiac devices, and physicians should take the initiative in talking with terminally ill patients and their families about turning off the devices, according to a new expert panel consensus statement released in May.

Implantable cardioverter-defibrillators, or ICDs, can impose a particularly heavy burden on terminally ill patients, continuing to send electrical shocks as the patient dies.

"His defibrillator kept going off," one family member of a dying patient told the authors of a study in the Dec. 7, 2004, Annals of Internal Medicine. "It went off 12 times in one night."

The phenomenon of an active ICD sending shocks in dying patients is not rare, said Rachel J. Lampert, MD, lead author of the consensus statement by the Heart Rhythm Society. The group represents more than 5,100 physicians specializing in cardiac pacing and cardiac electrophysiology.

"We know from data from our own institution that for about 20% of patients with ICDs the defibrillators go off in the days or weeks or hours before they die," said Dr. Lampert, associate professor of medicine at the Yale University School of Medicine in Connecticut. "ICD shocks save countless lives, and that's a wonderful thing, but when people are dying, the shocks are painful. The shocks aren't going to save them from cancer."

Nearly three-fifths of hospices reported patients getting shocked by their ICDs within the past year, said a March 2 Annals of Internal Medicine study. Only 10% of the 414 hospices surveyed had policies on deactivating ICDs, and 58% of the terminally ill patients who received shocks did not have their devices turned off.

The Heart Rhythm Society panel, which included representatives from the American College of Cardiology, the American Geriatrics Society, the American Academy of Hospice and Palliative Medicine, and the American Heart Assn., set out to address the problem by clarifying the legal and ethical status of deactivating cardiac devices. The consensus statement also advises physicians on how to communicate with patients and families about whether to turn off a device.

There are no court cases dealing directly with deactivating heart devices, but the legal and ethical principle that patients and their surrogates have the right to refuse care is solidly grounded, said panel member George J. Annas.

"The closest and most controversial cases are the feeding tube cases. When you take out the feeding tube, you know the patient is going to die," said Annas, chair of the Dept. of Health Law, Bioethics & Human Rights at Boston University School of Public Health. "Every court has looked at these cases and said, 'It's medical technology.' You can refuse a ventilator, you can refuse a feeding tube, you can refuse anything."

Patients have the right to refuse care, said Richard A. Zellner, a retired lawyer who served as the panel's patient representative. He had five implanted heart devices over 14 years before getting a heart transplant in 2006.

"The patient has a right to say, 'I don't want any more treatment,' " said Zellner, an adjunct lecturer in the Case Western Reserve University Dept. of Bioethics in Ohio. "When the patient says, 'I've had enough,' that's enough."

Assisted suicide?

The consensus on deactivating cardiac devices is not universal, however, as Zellner discovered personally. He said he had trouble getting doctors caring for his mother to turn off her pacemaker, which she had implanted at the age of 99.

At 101, she fell into an unresponsive "state of nonbeing," Zellner said. His mother was pacemaker-dependent, meaning that if the pacing function of her device was turned off, she would likely die quickly.

"I could not find the electrophysiologist who implanted the device," Zellner said. She eventually died 18 months later, in 2004.

The consensus statement does not distinguish between ICDs and pacemakers, saying that just as a patient has a right to refuse to have a device implanted, the patient also has a right to have the device turned off, even if that results in death. Such an act does not constitute physician-assisted suicide, the panel concluded.

"It is, literally, the difference between refusing treatment -- which patients have an absolute right to do regardless of what the consequences are -- and asking the physician to do something like a lethal injection," Annas said. "There is the question of causation -- what causes the death? It's the underlying disease, not a gun or a knife. And what's the intent? The doctor's wish is not to kill the patient, but to stop that treatment."

Many physicians are uneasy about turning off pacemakers. More than one in five Heart Rhythm Society members refused a terminally ill patient's request to deactivate a pacemaker, said a May 2008 study in Pacing and Clinical Electrophysiology.

"It may seem too much like physician-assisted suicide," said G. Neal Kay, MD, a panel member and director of clinical cardiac electrophysiology at the University of Alabama at Birmingham Hospital. "Not that that's what it is, but it could certainly make one feel uncomfortable that you're crossing that line."

The consensus statement recognizes that some physicians may believe it is wrong to deactivate pacemakers in pacemaker-dependent patients and says they should refer the patient to another doctor if so.

Doctors should start the discussion about potential deactivation early, Dr. Kay said.

"When the decision is made to implant a device, the physician owes it to the patient to at least discuss what the circumstances are when one might consider deactivating the device in the future," he said.