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End of Life Decisions: Defibrillators and Pacemakers
“His defibrillator kept going off... It went off 12 times in one night... He went in and they looked at it... they said they adjusted it and they sent him back home. The next day we had to take him back because it was happening again. It kept going off and going off and it wouldn’t stop going off.”
Implanted defibrillators are devices that deliver a potentially life-saving shock to a heart that is beating too fast or erratically. But such shocks can be painful and this may conflict with a terminally ill person's wish to minimize end of life pain. In one study, 20% of patients with an implanted defibrillator received painful shocks in the last weeks of their lives. Until now, there have been no guidelines on how to deal with implanted heart devices as the end of life draws near.
On May 14, a multidisciplinary committee, acting in collaboration with the American Heart Association, the American Academy of Hospice and Palliative Medicine and several other organizations, released a consensus statement outlining guidelines on the management of implanted heart devices in patients nearing the end of life.
The 15 member committee included an ethicist, nurse, lawyer, psychiatrist and a patient, as well as several doctors.
One goal of the statement was to balance two sometimes competing concerns: the need to give patients control over if and when an implanted heart device should be deactivated; and the need to not require medical personnel to take part in a procedure they may personally find ethically unacceptable. The statement recommends above all that patients with implanted heart devices be encouraged to make advance directives about them.
While living wills and advance directives often explicitly state a patient's wishes about resuscitation and the use of ventilators and tube-feeding, they rarely mention implanted heart devices. Very few patients with such devices ever discuss their deactivation with their doctor or even know that such deactivation is possible.
Legal precedent and current ethical consensus both agree that patients (or their surrogates) have the right to refuse or withdraw any life-sustaining treatment, if they choose to do so. Deactivating an implanted defibrillator is essentially no different than refusing to allow such a device to be implanted in the first place. It is not euthanasia or physician assisted suicide; deactivating the device does not cause death.
There is some disagreement over whether deactivation of a pacemaker is ethically permissible. Unlike defibrillators, which deliver occasional shocks, pacemakers may be continuously active in some patients and death may soon follow deactivation in such patients. This fact causes some to feel that deactivation is ethically unacceptable. Others see no difference between pacemaker deactivation and withdrawal of mechanical ventilation, another continuous treatment whose withdrawal is recognized as legally and ethically permissible. The consensus statement finds pacemaker deactivation to be ethically acceptable and permissible for patients who desire to withdraw the therapy.
While implanted devices are essentially no different from any other life-sustaining treatment, deactivating them does present certain technical difficulties.
Deactivating a defibrillator does not require surgery. It can be done by reprogramming the defibrillator, using an external, handheld device. But different devices are required for different makes and models of defibrillator. Patients at home, in hospices or in smaller hospitals may not have access to individuals with the proper equipment or expertise needed for deactivation. This requires, at minimum, consultation with trained personnel elsewhere. In emergencies, continuous application of a magnet can deactivate certain defibrillator models.
It is unlikely that there will ever be universal agreement on what constitutes acceptable and ethical behavior on the many different end of life issues. The consensus statement is an attempt at outlining a process for end of life decisions on implanted heart devices that is broadly acceptable and is guided by the patient's wishes.
The consensus statement was issued at the Heart Rhythm Association's 2010 annual meeting and is available at the Association's website. It will also be published in the July 2010 issue of HeartRhythm.
June 3, 2010
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