Assignment #1

THE INTERNAL CARDIAC DEFIBRILLATOR

Anne Pollock

Internal cardiac defibrillators (ICDs) are machines lit- erally and fi guratively “close to the heart.” These devices are similar in form to pacemakers but closer in func- tion to the external paddle defi brillators made iconic by television emergency rooms. Indeed, the Web site of one of the major producers of ICDs declares each device to be an “emergency room in the chest.”1 First devel- oped in the 1980s,2 by 2001 there were an estimated 100,000 Americans with this life- altering technology.3 Implanted to monitor dangerous arrhythmias and au- tomatically shock the heart into a regular rhythm, ICDs are designed to protect those at high risk for sudden cardiac arrest. They are meant to extend life, but they also change its management and meaning.

Having a machine inside you that periodically jolts you back to life brings up questions once raised only in science fi ction and philosophical bioethics. How do the jolts of the ICD—traumatic biotechnological inter- ventions—change the lives they seek to prolong? How do they change the deaths they attempt to postpone? Death for the ICD patient does not wait silently; it is foreshadowed with every shock.

I interviewed eleven ICD recipients who lived in di- verse parts of the United States and who had a wide range of fi nancial and educational backgrounds. I also interviewed two wives of ICD recipients. Despite their

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The Internal Cardiac Defi brillator 99

diversity, their stories had much in common.4 The pa- tients fi nd it diffi cult if not impossible to communicate their experiences of the shocks and the intimations of their deaths. Unlike paddles in an emergency room, im- planted defi brillators operate with no attending medi- cal personnel. The patient is alone, isolated in fear and pain.5 Most poignantly, they have been offered a tech- nology where not choosing treatment is presented as tantamount to suicide.6

Death and Life

“I died and then. . . .” This is the peculiar grammar of stories told by people with ICDs. The internal fi ring of the ICD is painful and brings one back from death, a repeated boundary crossing that writes a new narra- tive of life and death. Making that boundary so travers- able evokes feelings of confronting the uncanny in the sense that Freud wrote about it, something utterly novel yet known of old and long familiar.7

In his discussion of the uncanny, Freud writes that the “immortal soul” was the body’s fi rst double. Doubling has its roots in the desire not to die.8 Many of those implanted with an ICD experience it as a new kind of body double, so it is not surprising that they regard it with the wonder we associate with the soul. For ex- ample, Joel, a fi fty- eight- year- old Californian, says that when he contemplates his ICD it makes him afraid, but it also brings him to a new spirituality. Joel focuses on his good fortune at having survived his heart attack. It gave his life new meaning:

I pulled out of it, and 97% of most people don’t. So how lucky is that? And you have to deal with this stuff. Why am I the chosen person, out of those hundred persons—why am I one of the two or three chosen to survive? And I feel that there’s been some—that something happened that I was cho- sen to survive. I have no idea what that means.

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100 Anne Pollock

The darker side of having a body double is that the uncanny object brings death into new focus. Linda, fi fty, a rural Southern woman, says:

My independence was gone. And yet they say that this thing gives you more independence. Because you can be assured that you won’t go into cardiac arrest and die when you take a trip and all that. My thing is, we take a trip, and I’m wondering, okay, I wonder which one of these exits is a hospi- tal. Or, you know, something like that.

Initially, Linda was concerned about having a “foreign thing” in her body. That is something that no longer bothers her. Now she says that what is distressing is “knowing this is what I have to depend on. That I can’t depend on my own body to keep me alive.” Freud helps us understand the complexity of the ICD’s promise of protection. He could have been writing about the ICD when he says of the soul as double that it shifts from being “an assurance of immortality” to “becom[ing] the uncanny harbinger of death.”9

For patients who receive an ICD after a near fatal heart attack, the device is a reminder of both the death they escape and the one they will someday have. Joel puts it this way:

Every time I look in the mirror I think, oh, you’ve got an ICD in your chest. There’s a physical mani- festation of what happened to me. It’s something that happened inside my body, but I can see it every day when I take a shower. I look in the mir- ror and I see a little lump. Yeah, I think about what happened to me every day.10

For those patients who receive the implant after diagnostic tests indicated it was appropriate, shocks serve as a reminder of the death they will not have,

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The Internal Cardiac Defi brillator 101

a sudden death. A forty- two- year- old worker from the Rust Belt, Stan received his ICD when he passed out while running. Now he considers that the death he almost had would have been an “easy death.” “Like blacking out on the road, dying like that would be noth- ing. There would be no pain whatsoever. . . . To black out that way and die would be the way everyone would want to go, almost.” The ICD spared him that “easy death” and in the future would wake him up after a similar heart incident. In our conversation, Stan refers to an article on ICDs that we had both read in the New

York Times Magazine.11 Something in the article struck him: “Somebody mentioned in the article [that] it takes away the way you’re going to die.” Stan feels that the ICD has allowed him to make a trade- off. He gets, and is grateful for, the extra time: “I don’t want to die tomor- row.” But he has lost the easy death. His greatest fear is that he will receive multiple shocks from his ICD and then die.

Indeed, on one occasion, Stan did receive multiple shocks. He was swimming and felt a “funny feeling” in his chest that made him stop. “And all of a sudden, wham, I got shocked—damn, I gotta get out of the pool.” Just as Stan was getting out of the water, he was shocked again. He tried to explain to the lifeguard what was going on. He gave her his medical necklace and pulled the card out of his wallet that told her who to call. Then he was shocked a third time.

After the incident in the pool Stan asked his doc- tor how many times the ICD would shock him before it “would stop trying.” His doctor told him “about nine times.” Stan struggles to articulate why he fi nds that number high:

It will stop, reanalyze, go off, right, within about ten, fi fteen seconds of each other, probably. Or maybe I don’t know what the span is between shocks, I forget, when I come out of the pool. It

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102 Anne Pollock

might have been twenty seconds, thirty seconds, maybe. Yeah, it will go off nine, even if it doesn’t cure it, it’ll keep going off. . . . I mean, it’s like, if you’re going to die, you’re going to die. If you get shocked nine times, I don’t know if, [sigh]. Yeah, it’s supposed to correct it, but we’ll see. Like, sooner or later, everybody has to end—know what I’m saying? I mean when I get way, way, way older, or whatever . . . and my number’s up, I don’t know if I’m going to get shocked nine times before I die, or some, I don’t know. Or if I’m going to get shocked at all, if your heart stops, depends on how you die I guess.

It is a new thing to know the way that one will not die. I met Samuel, forty, in a café in one of the small cities that lie on Boston’s periphery. He had received his implant only a few months before. He was a large man at 300 pounds and wore a grey sweat suit. Sam- uel’s wife, Sarah, accompanied him. She pointed out the strangeness of understanding that “you’ll never die of the fatal arrhythmia you’ve been diagnosed with.” She asked, “How many people with a diagnosis can say that, that they’ll never die of their diagnosis?”

The ICD preserves life, but can provoke a new agony of life painfully extended. The body becomes the machine’s object, and that machine gains the power not only to save life but to terrorize it. In this, it again evokes Freud on the double: “The ‘double’ has become a thing of terror, just as, after the collapse of religion, the gods turned into demons.”12 The ICD offers the fantasy that death is avoidable. It turns each patient into an exemplar of the uncanny, where death is always close but never determined. Freud suggests:

Biology has not yet been able to decide whether death is the inevitable fate of every living being or whether it is only a regular but perhaps avoidable event in life. It is true that the statement “All men

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The Internal Cardiac Defi brillator 103

are mortal” is paraded in text- books of logic as an example of a general proposition; but no human being really grasps it, and our unconscious has as little use for it now as it ever had for the idea of its own mortality.13

With an awareness of their forestalled deaths, ICD pa- tients develop magical thinking not only to ward off death, as do many of us, but to ward off the shocks themselves. Although the shocks are painful, patients say that what makes them almost unbearable is that they happen without any notice and with no discern- able pattern. Stan describes the shocks as “aversion therapy” in the spirit of the movie Clockwork Orange.

ICD patients are under a machine surveillance that evokes historian Michel Foucault’s description of the Panopticon as a prison with a guard at its center, making it possible for the prison guard to see the pris- oners at all times. Indeed, the prisoners always feel under the guard’s gaze, whether he is actually there or not.14 The regime of control for an ICD patient is even more comprehensive than that for such prison- ers. Foucault’s prisoner needs to internalize the gaze of the guard. The ICD patient’s surveillance does not need to be internalized; it begins by being within. Fou- cault’s prisoner knows what constitutes transgression. The ICD patient does not know what actions will trig- ger a shock. Desperate to take some step, any step, to avert shocks, patients do things they have no reason to believe will protect them. Stan, for example, altered his beloved exercise routine (“I don’t go all out like I used to”) even though his ICD had never gone off while he was exercising.

Similarly, John, a seventy- two- year- old retired engineer from Montreal, tries to calm his excitable na- ture although the ICD has never fi red while he has been agitated. His effort to control his destiny is all the more desperate since he is trying to placate a fallible machine. He has been repeatedly shocked by a faulty ICD:

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104 Anne Pollock

I would be sitting quietly, and this may sound rather facetious, but anywhere from sitting, read- ing the newspaper, and all of a sudden this thing would go, bang, and I’d kick over the coffee table and say what the hell happened to me, to I’d be sit- ting on the john, and, bang—boy, I tell ya—a few of those and that would induce constipation. . . . [he laughed] So this occurred during July ’94, it oc- curred all the various, various times—in fact I had two fi rings in one day. And when that happens, it can almost put you right over the hill. I think the body is tuned to react to electrical discharges, and it can become very frightening, disheartening, dis- couraging, what the hell’s happening. And nobody could tell me.

John is in a situation where a course of rational ac- tion eludes him. He wants to avoid pain: “It’s one of these things that after you’ve had a few of them you do your damnedest to avoid them.” But the machine is faulty and can fi re for no reason. He ends up feeling dehumanized, like an animal: “Like cattle with an elec- tric fence around their fi eld. After they brush against it a few times, they stay away.” Yet from John’s point of view, the cattle have an advantage over him: he doesn’t know how to stay away from the fence. He wants to know the contours of the fence. All he has is second- guessing and magical thinking.

Before and After

The decision to receive an ICD does not fi t easily into medicine’s standard categories of informed consent. ICD patients are most likely to talk about their “deci- sion” to get an ICD as no decision at all. When they consider how their doctors framed the decision, it re- calls how social theorist Slavoj Žižek describes a forced choice. Žižek’s examples of forced choice include the

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The Internal Cardiac Defi brillator 105

demands made by the United States on other countries when the United States supports elections only after an unacceptable group has fallen in popularity or has otherwise been removed from the ballot, thus granting others “the freedom to make a choice on condition that one makes the right choice.”15 Forced choice is an im- perative masquerading as a choice.

Doctors present the ICD as the right choice. My in- formants say that their doctors present implantation in the context of an imminent threat of death. John says he chose the “obvious” when his doctor said: “Okay, you can die or you can have this thing.” Since receiv- ing his ICD, John has become less sure that his heart attack was necessarily explained by a heart defect. The life- threatening experience that led to the ICD occurred after a particularly stressful week, and he is convinced that all but one of the ICD “fi rings” (his word) that he has experienced were due to mechanical defects in the defi brillator. Moreover, John is not happy that the defi - brillator was presented to him as wholly benign: “They said it won’t do any harm. Obviously the guy who said that has never had one of these things fi re.”

John’s choice was made without understanding what was at stake. Like other informants, he insists that it was impossible to imagine what life with an ICD would be like. The most resentful patients say that their physicians never acknowledged that the machine comes with a cost.

Linda was offered her ICD after a potentially fatal heart attack. She had been experiencing symptoms that her doctors ignored. Finally, on the day she was put on a heart monitor she went into ventricular fi brillation. She says that either this was a coincidence or “God talking.” When Linda had her medical crisis, the doc- tors presented the choice: this machine or your life. She told me: “When the doctors look at you, and they say, ‘Well, you know, if you didn’t have this you’d be dead,’ it’s like ‘okay, thank you.’ ” But no one ever told her

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106 Anne Pollock

what the experience of having her life repeatedly saved by a machine would be like. She has been shocked by her ICD over eighty times. She talks about it being a good thing that “they have it.” The impersonal syntax is telling. Linda believes the ICD has saved her life, but the pain and uncertainty in her life make her unable to de- scribe the good it does in personal language. It is good that “they” have it—that it exists in the world. When it comes to her own case, however, Linda is not so sure.

Once an ICD has been implanted, my informants feel that asking to have it removed means choosing their death. Samuel says: “You’d be committing suicide if you have what I have or what other people have and you take the boxes out.” In Samuel’s formulation, reject- ing technology is identical to suicide. When sociologist Emile Durkheim wrote his classic work on suicide in 1897, he saw suicide as a discrete category. In contrast, the decision to remove an ICD can be an element in a set of choices for a better life.

Barry, a fi fty- year- old information technology pro- fessional from the suburban East Coast, had an ICD implanted after a heart attack. Then, through online research, he learned that he was not an appropriate candidate for an ICD. The doctors had made a mistake. At fi rst this knowledge made him nervous about his ICD misfi ring, but in the seven years he has lived with his ICD it has never gone off. His fi rst ICD ran out of battery power in 1999 and Barry considered not replacing it. But he decided that although the ICD should not have been implanted, now he wanted it. For him, it had come to represent what he calls “insurance.” His reasoning: even if it wasn’t put in for the right reasons, he is getting older (age fi fty when he and I spoke) and since it was not shocking him, why not leave it in?16

Barry told me that his cardiologist likes it when Barry attends ICD support groups. The cardiologist said that Barry provided a “positive example.” On the sur- face, it is absurd for a doctor to choose Barry as a role

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The Internal Cardiac Defi brillator 107

model. Barry does not need his ICD. He has never been shocked. His life is radically different from those pa- tients who presumably need the support groups most (those who are shocked often or who have a poor prog- nosis for survival). What we see here is the physician’s denial of the toll taken by implantation. The physician cannot see that his often- shocked patients cannot be optimally supported by one who has never had the ex- perience. Yet considering this case can help the rest of us think through what ICDs may come to mean for many more of us: technological insurance that is hard to turn down.

When Barry agreed to have his ICD battery re- placed, he did so because taking it out felt like a tiny step toward suicide. Barry accepts that he and the ma- chine are now one; he has a cyborg identity. Samuel has a similar thought in this dialogue with his wife that I witnessed shortly after he received his ICD:

Samuel: I’ve got something inside me that I know, forever, has changed my life. Sarah: I don’t think there’s even that option. You cannot be the old you. Samuel: I don’t think I ever would return to the old person. Sarah: It’s like me before and after kids. They call it a transition, it’s not, it’s a metamorphosis. Samuel: You can’t get rid of kids either.

In general, ICD patients were glad to speak with me about their experience, but they stressed that they had been through something that was in its essence, incom- municable. Stan said:

Nobody can understand what the feeling’s like, to get these, it’s kind of like getting electrocuted from the inside. Imagine that. When it drops you to your knees, you know you’re getting hit pretty

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108 Anne Pollock

hard . . . with electricity. And they [the doctors] can’t understand that, and I would like to whack them with this so they would understand what is going on here. They’re good at what they do, they’re good at putting these things in probably, and they know they’re saving lives, but they don’t really un- derstand completely what’s going on with it. And I think they have a certain mindset [toward] the people that they’re giving it to, yeah, there’s going to be problems but that’s just the way it is.

Literary theorist Elaine Scarry has argued that pain creates gaps in communication.17 In its inexpress- ibility, pain tests the limits of language. The isolation of a person in pain is a central fact of ICD patients’ ex- istence. They want to talk to their doctors about their pain to develop physicians’ empathy, but know that they cannot communicate what the shocks feel like. My informants were convinced that their physicians did not understand how their lives were affected by the shocks. As Samuel put it, “They [the doctors] think of you as a conduction defect.”18 His suggestion for the doctors: “I’d like to get those bastards and just shock them with 800 volts just to let them have an idea what it feels like.”

Although the shock that patients call “the zap” and doctors refer to as “therapy” is not easily spoken about, it is what prospective patients and their families most want to know about.19 The most frequently asked question on a Web site by and for ICD patients is “What does a shock feel like?” The Web site’s answer tries to be honest while remaining upbeat. It asserts the necessity of having the ICD by comparing it to death.

That’s a tough one. Like a sneeze, everyone’s re- action is different. Some people describe it like being kicked by a mule, others hit by a two- by- four, still others describe the rush of electricity

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The Internal Cardiac Defi brillator 109

through their body to the ground. Some people black out and may collapse before “therapy” is administered. Others are conscious for the whole thing. The lucky ones feel a little tingle. Suffi ce it to say that it’s not the most pleasant experience that you will encounter during your life. However, it sure beats the alternative!

All of my informants spoke about Dick Cheney. Cheney has an ICD but claims never to have been shocked. Some of my informants wonder if, on the con- trary, he has been shocked and this explains what has become of him. They say that they recognize the fear and pain in his eyes, a certain look. Others believe his claims not to have experienced a shock and say that this is why he is able to continue working. They em- phasize how much support and help he gets, trying to understand how an experience that is so debilitating for them could be shared by someone with such power and responsibility.

Some pundits have allowed themselves to imagine that it was in fact Cheney’s ICD that turned him from the man who urged caution when he worked for the fi rst President Bush to the man who promoted apocalyptic and rash policies under G. W. Bush. This point of view is captured by Maureen Dowd, who writes: “Some vet- erans of Bush I are so puzzled that they even look for a biological explanation, wondering if his two- year- old defi brillator might have made him more Hobbesian.”20

References to Cheney portray a diffuse anxiety. Does his status on the boundary between life and death make him a threat to the living? What could this have to do with escalating global war? Internet sites and comic strips make half- jokes that Cheney is already dead, an undead malevolent cyborg. This would make him the epitome of Freud’s uncanny and a channel for anxiety about a cyborg self.

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110 Anne Pollock

Cyborgs

In the mid- 1960s, cybernetician Norbert Wiener de- scribed the problem that doctors would face should it become technologically possible to prolong life indefi - nitely. Wiener cautioned that with the decline of quiet euthanasia, such as letting the too- frail die of pneumo- nia, doctors would engage in active euthanasia because families would not be able to bear their loved ones’ suf- fering and societies would not be able to tolerate the cost of indefi nite yet degraded life. In the new order, the doctor would become more god- like than before. Wiener wrote: “What if every patient comes to regard every doc- tor not only as his savior but his ultimate executioner? Can the doctor survive this power of good and evil that will be thrust upon him? Can mankind survive this new order of things?”21

Wiener’s predictions have not come to pass, but they are wrong in an interesting way. Wiener imagined doctors making the life and death choices. But ICD pa- tients illustrate a different scenario in which the choices are being left to each of us. ICD patients are harbingers of the time when we all will be asked to accept or refuse imperfect medical technologies, and accept the role of being our own “saviors and executioners.”22

Stan explicitly weighed the question of whether life is worth living in the pain and fear that accompanies his ICD. Stan was not actively considering removing his device, but leaves the possibility open: “Somewhere along the line you gotta weigh ‘what is the pain worth?’ I don’t know how many people out there got them, how they’re dealing with it, but I bet you they’re thinking similar thoughts.”

What model of the cyborg, then, is provided by people with ICDs? Donna Haraway defi nes the cyborg as a “hybrid of machine and organism, a creature of social reality as well as a creature of fi ction.”23 Some cyborgs seem triumphal (such as the pioneers of wear-

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The Internal Cardiac Defi brillator 111

able computing), but people with internal defi brillators are cyborgs who show the strain. In this, they may be emblematic of the cyborg future in an increasingly geri- atric North America. They do not have models to explain their pain or think about their isolation. They turn to their doctors, and their doctors are mute on what mat- ters; they turn to articles in newspapers that offer more hype than help; they turn to online support groups for the simplest recommendations on how to live. Their ex- perience reminds us that the machines we put in our bodies are as imperfect as our bodies themselves.

Anne Pollock completed her PhD in the History and Social Studies of Science and Technology at MIT in the spring of 2007. After a postdoctoral year in the Department of Anthropology at Rice University Department of Anthropology, she became Assistant Professor at Georgia Tech in the Department of Literature, Communication and Culture, contributing to that department’s program in Science, Technology and Culture.

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