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When should you deactivate implanted cardiac devices?
Look to patient autonomy standards
Are internal defibrillators and pacemakers biofixtures, like artificial hearts, that should not be deactivated when a patient is dying? Or are they like any other external device — for example, supplemental oxygen — that are protective of life but employed at the discretion of the user?
A survey of hospices in the Denver area shows that the issue of deactivating defibrillators and pacemakers arises often, and physicians vary widely in how comfortable they are with deactivating the devices. Doctors perceive a lack of adequate information, the survey reports.
James Kirkpatrick, MD, an echocardiologist at the Hospital of the University of Pennsylvania and an associate of the Center for Bioethics at Penn, says there is a lack of national guidelines that would help physicians — and patients — make decisions about implanted devices when the end of life approaches.
"On a national level, there hasn't been enough discussion about this," says Kirkpatrick. "The traditional agencies [American College of Cardiology, American Heart Association, Heart Rhythm Society, etc.] haven't come forward and addressed this issue. But many practitioners are very uncomfortable with turning them off."
But many patients themselves are anxious for their doctors to agree to turn off the devices when they are actively dying, so as not to artificially prolong their lives. This creates a dilemma for their physicians.
And more and more physicians are going to find themselves facing this question, as the number of patients with implantable devices skyrockets. Kirkpatrick says current data indicate that 3 million patients qualify for implantable devices, and 400,000 more come into qualification each year.
"So we're talking about a huge population, and before, there hadn't been much discussion about what to do with them at death," he points out. "Now we have all these patients [with devices] who get sick from cardiac disease or who are just getting older and getting other diseases that are going to be terminal, so we need more discussion on what to do with them."
Discuss devices early with patients
The survey of hospices in Denver, published in 20051, indicates that while the question of whether to deactivate internal cardiac devices arises often and there is clinical and ethical support for deactivating them, the decision to do so is accompanied by "high feelings and inadequate information."
The author of the study, Jennifer Ballantine, MA, writes that if a competent patient perceives that the device is interfering with a peaceful death and prolonging suffering, keeping the device going may constitute an "intolerable burden." Relieving that burden, she adds, could be ample justification to deactivate the device.
Ballantine asserts that while the literature is "scant" on the subject of withdrawing or deactivating low-burden support technologies, such as defibrillators and pacemakers, there is no suggestion in the published papers that deactivating the devices might legally or ethically constitute physician-assisted suicide or euthanasia, even in patients completely dependent on the devices.
What needs to happen, Ballantine proposes, is that physicians and patients need to talk about implanted devices upon admission to hospice, or in other discussions about any end-of-life issues, particularly when the topic of extraordinary measures arises.
"Decisions made in advance can provide clear guidance for family and care team members," writes Ballantine.
Nathan Goldstein, MD, an assistant professor at Brookdale Department of Geriatrics and Adult Development, Mount Sinai Medical Center, NY, asked about physician-patient discussions regarding deactivating defibrillators at Yale-New Haven (CT) Hospital in 2004, and found that the issue came up in only 27 out of 100 terminally ill patients (all of whom had defibrillators) at the hospital — sometimes, not until after the devices had delivered shocks that were painful to the patients, distressing to family members who witnessed them, or both. Among patients who had DNRs, the discussion still only took place 45% of the time.2
Part of the problem, Kirkpatrick says, is that electrophysiologists "are not trained to think about end-of-life care and hospice, and hospice physicians are not trained to think about the intricacies of defibrillator management."
"Cardiologists are somewhere in the middle," he adds.
One way to get clinicians thinking along the same lines, he says, would be to establish end-of-life and ethics education initiatives for electrophysiologists and cardiologists, and for primary care and hospice physicians on defibrillator management at the end of life.
Talking with patients about the benefits and drawbacks of disabling internal devices at the end of life not only allows the physician to fully inform the patient, but also may shed light on the patient's reasons for wanting the device disabled.
"You have to look at why someone would be interested in turning it off," says Kirkpatrick. "In the traditional sense, most people who make that decision have a terminal illness and don't want to continue life unnecessarily. So [for them] it makes sense to turn it off, because they're thinking that if they die from an abnormal heart rhythm, that is not such a bad way to die."
Avoid unnecessary suffering
While most patients who undergo CPR or a shock from an implanted defibrillator are unconscious when it happens, sometimes patients are awake and aware of the shock, which they describe as being like a kick in the chest by a horse.
"Undergoing CPR and defibrillation is traumatic, and getting shocked multiple times while in hospice [as the heart rhythm falters] can be extremely distressing and painful," Kirkpatrick says. "So there is an ethical issue involved — to relieve suffering. And when people have multiple conditions, they can be predisposed to unnecessary suffering."
The action of a pacemaker, however, is less disturbing to the end-of-life scenario in most cases, Kirkpatrick adds.
"If you continue pacing, in most cases that won't forestall death, because by the time a patient gets to the end of life, there's a metabolic milieu that will probably prevent the pacemaker from capturing [the rhythm]," he explains. "So I wouldn't necessarily turn [a pacemaker] off in most cases, and that seems to be the consensus."
Until national guidelines evolve, Ballantine suggests using accepted ethics guidelines for discontinuing life-sustaining treatment when discussing deactivation of devices in competent patients. These guiding points include:
Should devices be recycled?
Reuse of internal defibrillators and pacemakers in humans is currently illegal in the United States (though pacemaker reuse in animals, usually dogs and horses, is common). But Kirkpatrick is among physician-ethicists who think the subject is ripe for discussion.
"After death, we found in surveying morticians in the Chicago area, most devices get thrown away if they are removed," he relates. "If they are still in the body, they get buried." (Implanted devices are removed before cremation.)
"We found that morticians really don't know what they are supposed to do with them. The device companies want them back, and the reason for that is they can do bench testing on the pulse generation to determine the error rate."
The official position of the Heart Rhythm Society is that the devices should be returned, but Kirkpatrick says pacemakers are finding new use via transplants in other countries.
"A missionary doctor can take them overseas and transplant them into patients who otherwise wouldn't get them," he explains. "Defibrillators probably are less useful, but pacemakers can be very important [to such patients]. When you consider someone in South America with Chagas disease [parasitic disease that can lead to cardiomyopathy, altered heart rhythm, and cardiac arrest], who is a laborer who can't work and support his family, a pacemaker would not only be lifesaving for the patient, but for the family as well."
There are still questions, though, about how to sterilize used devices adequately, as well as the reliability of recycled pacemakers and how to follow up with patients who don't have ready access to care.
1. Ballentine JM. Pacemaker and defibrillator deactivation in competent hospice patients: An ethical consideration. Am J Hosp Palliat Care 2005; 22;14.
2. Goldstein NE, Lampert R, Bradley E, et al. Management of implantable cardioverter defibrillators in end-of-life care. Ann Intern Med 2004; 141:835-838.