Deactivating Pacemakers and ICDs

From Ethics & Medics (November 2014) Volume 39, no. 11 Originally written for the National Catholic Bioethics Center, this paper is an attempt to answer the question "when can pacemakers and ICDs be deactivated?" in accordance with the teachings of the Catholic Church. Deactivating Pacemakers and ICDs In 2003, Katy Butler’s father Jeff was urged to undergo surgery to remedy a painful intestinal hernia. Because the doctors predicted that his slow heartbeat would make the operation needlessly dangerous, his family consented to the insertion of a pacemaker as a short-term, preventative measure.1 Two years later, the “age related degeneration,” which had caused that slow heartbeat in the first place began to attack his eyes, lungs, bladder, and bowels. In the summer of 2006 Jeff suffered a devastating brain hemorrhage after which he could no longer feed himself, read a book, use a napkin, or sustain any but the simplest of thoughts. His wife found herself taking care of him some eighty hours a week, forsaking all other aspects of her life. Without the pacemaker, Katy’s father would die within a few weeks or months. With it, he would persist for years in a perpetual state of mental and physical degeneration, becoming more and more of a financial, mental, and emotional burden on his loved ones. Soon after the brain hemorrhage, Katy’s mother begged for her daughter’s help: “Please, help me get Jeff’s pacemaker turned off.” 2 Today, more than three million people have had either a pacemaker or an implantable cardioverter defibrillator (ICDs) implanted in their chests, and six hundred thousand more join the number every year,3 with each new recipient inevitably facing one or another related ethical dilemma. For instance: may I have this device removed if I decide I don’t want it? May I deactivate it if I am approaching death? When the batteries run out, am I ethically obligated to replace them? What freedoms and duties do I have regarding these devices? To answer these questions well as catholics, we need to be sure we understand two things: (I) the functions of pacemakers and ICDs, and (II) the duties which follow upon the value of personhood. I. Pacemakers and ICDs Pacemakers are small devices placed in the chest or abdomen to help control abnormal heart rhythms. Through the use of light electrical impulses, they “prompt the heart” to beat at a pace determined beforehand by the patient’s doctor. Another device, distinct from the typical pacemaker, is the implantable cardioverter defibrillator, or ICD. An ICD functions much the same as a pacemaker but is also able to deliver powerful shocks to the heart in the event of a Katy Butler, “What Broke My Father’s Heart,” Nytimes.com, June 18, 2010, http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?_r=0 2 Ibid. 3 Mark A. Wood and Kenneth A. Ellenbogen, “Cardiac Pacemakers from the Patient’s Perspective,” Circulation 105.18 (May 7, 2002): 2136–2138, http://circ.ahajournals.org/content/105/18/2136.full. 1 drastic rise or fall in rhythm. This allows the ICD to treat unforeseeable problems like sudden cardiac arrests at the moment they occur, a unique function that has saved the lives of many. The procedure required for implantation is minor.4 No open-heart surgery is necessary, and patients can usually go home within twenty-four hours. The batteries for these devices last from five to ten years, and replacing them involves a procedure much like the original surgery but with less recovery time.5 Deactivating a pacemaker or ICD requires only a computer command from the patient’s cardiologist, which can even be done outside of the hospital.6 II. Principles and Applications As creatures crafted in the image of God, we are blessed with both intelligence and freedom, inestimably noble goods whose exercise always includes “responsible stewardship for all that we have received… including our physical health.”7 Possessing these goods, we are also commanded to love our neighbors and ourselves, from which stems the duty to protect and preserve our bodily and functional integrity and thus the prohibition of murder and suicide. This duty is not absolute, however, for we carry along with it our human mortality. Because of this, there are times when “we may reject life-prolonging procedures that are insufficiently beneficial or excessively burdensome.”8 Discerning just what circumstances fit that exemption, however, can be a difficult task. The key criterion is whether a treatment constitutes extraordinary means; that is, whether it either (I) provides no benefit, (II) is too burdensome, (III) inspires strong psychological distress, or (IV) is excessively expensive. Because of the relatively low cost, ease, and availability of these devices, implantation is often an ordinary means for people suffering from dangerous arrhythmia. However, circumstances exist in which their deactivation may be morally acceptable. There are three main situations in which the question of ethical deactivation seems to arise frequently: first, when a patient is approaching the end of life and is equipped with an ICD; second, when a patient is kept alive by a pacemaker and is undergoing intense suffering; and third, when a pacemaker-dependent patient has become a great burden to family and loved ones. Terminally ill patients outfitted with ICDs commonly request deactivation of their devices as they approach death. In such a circumstance, two elements can allow for ethical deactivation: first, the inevitability and proximity of death makes the ICD a futile treatment, “Surgery: What to Expect—Implanting a Pacemaker,” Medtronic .com, accessed July 17, 2014, http://www.medtronic.com/patients/ bradycardia/getting-a-device/pacemaker-surgery/index.htm. 5 Mayo Clinic Staff, “Tests and Procedures: Pacemakers: Results,” Mayoclinic.org, April 10, 2013, http://www.mayoclinic.org/tests procedures/pacemaker/basics/results/prc-20014279. 6 Nathan Goldstein et al., “Management of Implantable Cardioverter- Defibrillators in Hospice: A Nationwide Survey,” Annals of Internal Medicine 152.5 (March 2010): 296–299, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2832227/. 7 Germain Kopaczynski, “Totality and Integrity,” in Catholic Health Care Ethics: A Manual for Practitioners, ed. Edward J. Furton, Peter J. Cataldo, and Albert S. Moraczewski, 2nd ed. (Philadelphia: National Catholic Bioethics Center, 2009), 13. 8 US Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Care Services, 5th ed. (Washington, DC: USCCB, 2009), n. 29. 4 thereby removing the hope of benefit necessary for ordinary means; and second, the intense pain that the ICD is sure to cause in the patient as the heartbeat slows might go beyond her capacity to bear it, and that treatment would therefore count as an exception to her regular duty. While a pacemaker does not threaten the same level of pain as an ICD, it too may cease to offer any hope of benefit, and if so, may also be deactivated according to the patient’s wish. If a patient is pacemaker-dependent and is undergoing intense suffering from a problem other than that which the device is intended to remedy, the question calls for more careful consideration. The distinction between ordinary and extraordinary does not take into account the entirety of a patient’s medical situation; it can only concern the relationship between a specific problem, its corresponding treatment, and that treatment’s effects. We may be tempted to conflate these with other details of the patient’s condition. If for example the patient is suffering from perpetual migraines and is kept alive by an ICD, it might be claimed that the device is an extraordinary means because of her severe pain. But this reasoning would be erroneous because it sees the device as the source of pain when it is in fact causally unrelated. Unless the pain comes either from the treatment itself or from the underlying pathology’s perseverance through that treatment, treatment remains in the category of the ordinary. If, however, her pain does derive from one of those sources, the device may be deactivated without constituting suicide or euthanasia. Like other treatments, pacemakers and ICDs can play a part in turning patients into great financial or emotional burdens on friends and family, especially if the patient is pacemakerdependent in a persistent vegetative state. In this case, it may be tempting to count this burden as a type of great expense and therefore consider the device an extraordinary means. But again, it must be remembered that that distinction holds only in the relationship between a specific problem, its treatment, and that treatment’s effects. Presumably in these cases, as with Katy’s father, it is not truly the pacemaker or the ICD that places a great burden on the family but rather the underlying pathology, which these devices are not intended to remedy. Therefore, the burden fails to warrant deactivation—that is, it fails under these criteria. If somehow the pacemaker itself were too great an expense for the family, deactivation might be permissible. Or, if other treatments were involved and one of them fit the category of extraordinary means, it too could be abandoned. What cannot be allowed, however, is the direct killing of a patient through removal of ordinary treatment inspired either by unhappiness on the part of a third party or the judgment that the patient’s life is no longer worth living. Many other situations give rise to the question of deactivation, though none are as common as those addressed above. For example, a small number of patients have reported that they could feel their devices beating in their chests and were in great discomfort because of it. In such cases, a device could be turned off if the patient decided that the psychological distress truly went beyond their ability to reasonably bear it. There is also the question of whether the procedure needed for replacement of a depleted device counts as an ordinary or extraordinary means. As with all cases, independent judgment regarding the distinction must be made on the part of the patient and those involved with full awareness of the surrounding medical and financial context. But again, because of the relative accessibility of replacements, the procedure will likely be ordinary in most cases. Still, some situations could make it extraordinary; if, for example, the patient is extremely poor or approaching the end of life. III. A Final Reminder What must be kept in mind throughout all these questions and applications is that judgments must center on a patient’s treatment rather than either subjective estimations of life’s value or the desire to keep living. The positing of such value is not the work of human beings, after all, and the preserving of life is not a mere whim but is rather a God-given duty through which we are called to celebrate, contemplate, and worship the Divine Love.