Living With Prophylactic ICD Therapy and the Risk of Sudden Cardiac Death: How Patients Negotiate Solutions and Problems

Abstract

Prophylactic implantable cardioverter defibrillator (ICD) therapy treats potentially lethal cardiac arrhythmias in patients who have not previously experienced such but are at considerable risk due to underlying heart disease. Most patients are unaware of their risk of sudden cardiac death (SCD) until the ICD is introduced to them. Thus, the problem of risk of death and the solution of ICD therapy are presented simultaneously. Based on ethnographic fieldwork in Danish hospitals, this article illustrates how clinicians narrate prophylactic ICD therapy as a benign therapy preventing risk of death and providing the good life. However, risk of SCD is not the most pressing problem for the patients. The article argues that the solution of ICD therapy ignores patients’ experience of living with severe heart disease and introduces the risk of shock therapy. For patients, a good life does not equal absence of risk of death but a life without heart disease.

Keywords

medical anthropology doctor–patient communication illness and disease experiences medical technology risk adaptation,coping,enduring ethnography Northern Europe

Introduction

Today is my new birthday—the beginning of the rest of my life! I’m starting to make plans for the next twenty years,” says Kate joyfully shortly after her first implantation with an Implantable Cardioverter Defibrillator (ICD). Kate has had her ICD implanted on primary prophylactic indication. This means that she has not previously experienced any of the life-threatening ventricular arrhythmias or a cardiac arrest that the ICD is meant to prevent but is considered to be at substantial risk for them due to her heart condition. Kate and most ICD patients are not confronted with their increased risk of sudden cardiac death (SCD) until the question of primary prophylactic ICD therapy arises. Risk awareness is introduced along with the technology to remedy it. Kate does not find this paradoxical. She describes the work that the cardiologists do to help her as “absolutely fantastic” and is thrilled about her new ICD, which prevents her from “suddenly dropping dead.” The ICD makes her feel safe, she says, and she appreciates the remote monitoring box, which was installed in her bedroom shortly after implantation, as it allows clinicians to monitor her heart and the ICD and “keep an eye on” her around the clock.¹ (Field note excerpt)

This goes for all the patients I met in the clinic. Patients became anxious when confronted with their increased risk of sudden death and, moments later, expressed feelings of good fortune, relief, and gratitude when offered an implantable cardioverter defibrillator (ICD), the existence of which they were not previously aware, either. I expected patients to be upset by their sudden insight into the risk of death and the prospect of surgery, but most patients never questioned the notion of “an increased risk” or their need of an ICD. Instead, they blithely accepted the offer—which was most frequently presented as directive advice (Koch & Svendsen, 2005) or a forced choice (Pollock, 2008)—and did not consider their new risk awareness problematic in any way, or question the personal benefits of their ICD therapy or the way it was introduced. But, when I met them in their homes several months later, insecurity and anxiety about ICD technology, the therapy it provides, the disease it treats, and the risk of death were common among them. This article seeks to understand patients’ taken-for-granted attitude toward prophylactic ICD therapy in the clinic and the change in attitudes following hospital discharge by exploring the relationship between the staging of ICD therapy and risk of sudden cardiac death (SCD) in the clinic and patients’ experiences of everyday life with ICD therapy.

ICD Therapy in Denmark

ICD therapy has been a standard treatment for patients with documented ventricular arrhythmias and survivors of cardiac arrest since the mid-1980s. This is called secondary prophylaxis. Primary prophylactic ICD therapy was introduced two decades later. Based on positive results from clinical studies of the benefit of ICD therapy in the management of a variety of heart conditions, the indication was widened to include patients at risk of life-threatening ventricular arrhythmias but without a prior history of such events (Zipes et al., 2006). In accordance with the recommendation of local cardiology societies, primary prophylactic ICD therapy was adopted as a standard treatment in most Western countries in the 2000s, including Denmark (Danish Society of Cardiology, 2006), where my research takes place. Since then, the number of first-time implantations of primary prophylactic ICDs has increased rapidly, and so has the proportion of primary prophylactic compared with secondary prophylactic ICDs. In 2013, Danish electrophysiologists performed 214 new ICD implantations per million inhabitants, and 50% of them were primary prophylactic ICDs (Danish Health and Medicines Authority, 2014). This study concerns patients in primary prophylactic ICD therapy, in the following referred to as prophylactic ICD therapy. As a prophylactic therapy, an ICD is designed to treat an illness that is not necessarily present, in the sense that no one knows whether a given patient will experience life-threatening ventricular arrhythmias. The majority of ICD patients never will: According to a Canadian health technology assessment (Ho et al., 2007), the number needed to treat is 14, meaning that one SCD is prevented in every14 patients. An ICD is a potentially life-extending therapy but not a cure; it does not make the heart work better, and it does not reduce symptoms of the underlying heart disease.² As such, prophylactic ICD therapy treats the mere existence of risk (Shim, Russ, & Kaufman, 2006). Most of the time, it solely monitors. In the case of ventricular arrhythmias, it paces the rhythm back to normal, and only in the rare event of nonconvertible arrhythmias or cardiac arrest does it provide shock therapy—that is, an electrical shock to the heart.

In Denmark, health care is completely funded by taxes. ICD patients do not hold any financial costs. The municipality in which the patient lives pays for examinations, therapy, and hospitalization, and costs are handled solely between the municipality and the hospital.

All ICD patients in Denmark are remotely monitored: Data from the heart and the ICD are collected and stored in the ICD and transmitted to a remote database via the box in the patient’s bedroom. This allows clinicians to monitor the patients from a distance without communicating with them. ICD remote monitoring is different from most types of telecare technology, in that it does not require patients to participate after the initial installation of the box. The box does, however, communicate with the patient: It flashes and/or beeps if anything is wrong (for instance, if the data transmission does not work properly), alerting the patient to take action. Furthermore, like other types of telecare technology, ICD remote monitoring keeps patients constantly connected to and dependent on the clinic.

Analytical Framework

Several scholars have studied telecare technologies and their implications for patients—most recently, Oudshoorn (2011) and Pols (2012). They showed, among other things, how telecare delegates new tasks and identities to the patients, thereby transforming their everyday lives. Others have studied patient perspectives on living with chronic heart failure (Nordgren, Asp, & Fagerberg, 2007) and ICD therapy (Bremer, Dahlberg, & Sandman, 2009; Dickerson, 2002; Fridlund et al., 2000; Pollock, 2008), highlighting psychological implications such as fear of shocks, change of identity, and the experience of losing control. None of these scholars has concentrated on patients in prophylactic ICD therapy or remote monitoring. The question remains how prophylactic ICD therapy, combined with this particular type of telecare, shapes patients’ everyday lives. My theoretical point of departure is an understanding of patients and technology as mutually constitutive in social situations, for example, in the clinic and in patients’ everyday lives in which clinical guidelines and practices, biomedical norms, and societal values also play central roles. A technology is not a fixed entity with a predetermined purpose but is molded by its users, just as the users are shaped by the technology. This view is found in many studies of science and technology that have explored the mutual shaping of medical technologies and users (see, for example, Oudshoorn & Pinch, 2003). Within this field of research, Latour and Venn (2002) state that a technology is not a means to a specific end. Rather, it is a mediator between design intentions and multiple, unforeseen ends. They also argue that needs are created with technology. They do not preexist as problems to which a solution is subsequently sought by developing technologies. Building on this argument in their studies of the use of ICD therapy for elderly persons in the United States, Kaufman and colleagues (Kaufman, 2010, 2015; Kaufman, Mueller, Ottenberg, & Koenig, 2011) viewed the expansion of the indication for ICD therapy as a new end for the same technological means and showed how this new option for risk treatment created the need for it. Spector and Kitsuse (2001) claim that solutions create problems by framing the ways in which a problem can be understood and solved.

Applying these ideas, this article studies the introduction of prophylactic ICD therapy as a solution that creates the problem of risk of SCD for patients who were formerly unaware of their risk. The article illustrates how the problem arises with the introduction of the solution, which is subsequently legitimized and negotiated vis-à-vis its corresponding problem in the everyday lives of the patients. In the following, the solution of prophylactic ICD therapy and the problem it defines is referred to as a solution model (Jöhncke, Svendsen, & Whyte, 2004). Jöhncke et al. (2004) claim that, in processes of framing and claiming solutions and their problems, societal rationalities are expressed. An example of a dominant and accepted solution model is new screening options used to uncover the risk of genetic diseases, a solution model relying on the idea that behaving as a responsible citizen means participating in screening programs and acting according to expert recommendations (Koch & Svendsen, 2005). Analyzing prophylactic ICD therapy as a solution model allows for exploring which conceptions of risk, SCD, and the good life are at stake in the introduction of prophylactic ICD therapy and what the practical implications of the technology are for the patients. The good life refers to the kind of life one would like to live—not a perfect or ideal life, but a happy and enjoyable life. As we shall see, though, the good life has different meanings for clinicians and patients, respectively. Jöhncke et al. (2004) argue that solution models have consequences for the identity of the people they affect in the sense that they create options for certain courses of action, close other courses of action, and foster reflection. This article’s contribution to existing studies of solution models in the clinic (Kaufman et al., 2011; Koch & Svendsen, 2005) consists of following the patients out of the hospital and exploring how the clinical staging of risk and prophylactic ICD therapy shapes patients’ experiences and everyday lives. Risk is understood in constructionist terms: as being created in specific sociocultural contexts and as shaping behavior (Lupton, 1999). The analysis is twofold: First, it illuminates the processes in which the creation of a specific solution model unfolds in the clinic, pointing out how clinical experts establish a narrative about a pressing problem that can be solved with a benign therapy. Second, the unpredictable implications of the solution in patients’ everyday lives are investigated and it is discussed how the patients negotiate and challenge the solution model.

Method

The article is based on ethnographic fieldwork in heart clinics that perform ICD therapy in two Danish hospitals: Aarhus University Hospital and Copenhagen University Hospital. The fieldwork included observations and informal conversations with approximately 30 clinicians and 40 patients as well as in-depth interviews with five clinicians and 12 patients. The 12 patients were interviewed in the clinic shortly after implantation and again 6 to 8 months later in their homes. Furthermore, follow-up phone calls were made 1 year after the interviews. The 12 patients who were interviewed were chosen from all patients encountered during a 3-month-period. The aim was to include both men and women of different ages with different illness trajectories. Of the 12 interviewed patients, seven were men and five were women. They were aged from 33 to 73 years. The ethnographic method (Hastrup, 2010) was chosen, as it allows for studying the specific practices in which patients’ experiences of prophylactic ICD therapy are shaped and the solution model is introduced and negotiated. Using Clarke’s situational analysis (Clarke, 2005), interview transcripts and field notes in Danish were organized into positional maps, that is, analytic tools applied to discursive material to elucidate discursive positions implicated in a given situation (see Clarke, 2005, for an example). Discursive positions are based on conceptions and experiences of the situation and are not bound to individual actors; each actor—individual or group—can occupy diverse and contradictory positions (Clarke, 2005). For instance, two opposing positions—that ICD therapy is benign and that ICD therapy causes anxiety—were found both among clinicians and patients in the material at hand. The maps illustrated a dominant narrative and several opposing narratives about prophylactic ICD therapy existing in the clinic and in patients’ everyday lives. Positional maps may also reveal missing discursive positions; positions that for some reason remain unarticulated in the situation of inquiry (Clarke, 2005). By mapping the discursive positions taken, what is not said becomes apparent. For example, if a strong discourse about the advantages of ICD therapy is found, any lack of an opposite discourse suddenly appears. In the present study, the missing positions in the positional maps drew attention to issues regarding prophylactic ICD therapy that were not verbalized by the cardiologists in the introduction of the therapy, for instance, the severity of the patients’ heart disease and the impact of shock therapy. The missing positions in the maps also highlighted patients’ ignorance of the risk of SCD and their lack of questioning their new risk awareness. These findings inspired and guided the further analysis.

All names are pseudonyms. Each of the 12 interviewed patients has signed a written declaration of informed consent. This study has been approved by the Danish Data Protection Agency. The Danish research ethical system does not require approval of qualitative interview and observation studies that do not include investigation of humans or human material.

The Clinical Staging of Prophylactic ICD Therapy as a Solution

During my fieldwork, I attended approximately 25 clinical encounters in which clinicians presented the option of prophylactic ICD therapy to patients for the first time. This introduction was almost identical even though performed by many different clinicians: The clinician—usually a cardiologist—initially highlights the increased risk of SCD caused by ventricular arrhythmias, a potential consequence of the patient’s underlying heart condition. Until then, this risk has not been pointed out to the patients. On the contrary, many times, I hear cardiologists tell heart failure patients that “the pharmaceutical therapy can keep you alive for the next 20 years,” implying that the heart will slowly wear out and eventually give up. Consequently, patients are often surprised and shocked to learn that their heart may, in fact, give out at any time. “Once I learned about [the risk], I could hardly wait to get [the implantation] done, and I didn’t understand why I had to wait so long,” says Robert. In many cases, the disease is newly diagnosed and causes few symptoms. This means that the patient does not feel sick and must be made aware of the severity of the disease to understand the necessity of ICD therapy: “When you have decreased muscle power in the heart, you have a more severe disease than most people think,” a cardiologist explains to a patient. Articulating the risk of life-threatening ventricular arrhythmias or SCD, which “strikes like a bolt in the blue,” the cardiologist seeks to convince the patient of the relevance of prophylactic ICD therapy. He continues, “the good news is we have a cure. It’s a special type of pacemaker called an ICD that can prevent people who have good lives from suddenly disappearing.” According to him, “many ICD patients have a very good life,” and ICD therapy is presented as a means to allow the patients to continue their “good life” for as long as the heart otherwise lasts. The ICD is described as “a lifesaver,” “a safety net,” “the best life insurance in the world,” “a personal defibrillator” with reference to the external defibrillators installed in many public spaces in Denmark, “a personal heart ambulance,” “a guard dog,” or “an Anja Andersen,” referring to a Danish handball player who received shock therapy from her ICD on national TV. The vocabulary used by clinicians to describe the ICD contains promises of safety. Embedded in the solution of prophylactic ICD technology is a conception of what constitutes the good life, namely, a long life in safety from the risk of SCD. In the clinical narrative, risk of SCD is verbalized as a threat to the good life and ICD therapy as the means to reach the ideal of longevity and safety. The heart is understood as a muscle, the function of which can be controlled, and death as a condition that can be prevented or “a symptom to be treated” (Kaufman, 2015; Kaufman et al., 2011).

ICD implantation is presented as a small, harmless procedure performed in a cheerful atmosphere. “Usually, it’s quite nice,” says a cardiologist. “Is there anything problematic in getting a pacemaker?” he asks rhetorically and replies: “No. It is a small operation; it includes cutting and various organs can be punctured, but we do not consider it a big thing.” Cardiologists do tell patients about potential side effects and complications but usually only mention two such possible events and trivialize their severity and frequency. The cardiologist who tells John about ICD therapy puts it this way:

There’s one possible side effect, namely, unintended shocks. An unintended shock is not an accident. It’s caused by an event that the ICD misinterprets . . . Under normal circumstances, you won’t feel it; you’ll be unconscious when it happens . . . What you expose yourself to is the risk of a shock that is harmless but painful and that, afterwards, can be prevented from happening again.

Hence, shocks are described as harmless and preventable by means of reprogramming the ICD, and the pain is downplayed, using patient testimonials—for instance, with a story about a patient who insisted on finishing the badminton game he was playing when he received his first shock. The cardiologist continues, “the only complication that we don’t like is infection. It happens to one out of 200 [patients].” The implications of living with an ICD are described using presumptions about patients’ experiences: “One week from now, you’ll have forgotten everything about your ICD. Most people who have an ICD don’t think about it except for when they go in for follow-ups.” The ideal outcome of ICD therapy, according to the cardiologists, is an active, unrestricted life with a safety net. “That’s how we want it to be. The only thing you’re not allowed to do is to place a magnet on top of your ICD.³ Apart from that, you can have a perfectly normal life.” Cardiologists do stress that an ICD will not necessarily provide positive effects for the patient:

We think that out of 100 patients, 7 will benefit from the therapy, but we’re not sure . . . so, some patients will get the ICD without ever needing it. On the other hand, some will need it badly.

However, because disadvantages are minimized, the patient apparently has little to lose. “Who can refuse 20 years more?” a cardiologist puts it. Accordingly, none of the patients in this study even considered refusing the offer. In face-to-face interactions with clinicians, none of the patients challenge or even question their newly discovered risk of death or their need of an ICD. Questions are rare and any resistance is not displayed. The patients seem to quietly accept what is being presented as indisputable truth. Only in our subsequent talks, it becomes apparent that their understanding of heart disease and ICD therapy differs from the understanding expressed by clinicians in the described encounters.

In the process of confronting patients with their severe disease and their considerable risk of SCD and, simultaneously, by using a vocabulary of hope and safety, which introduces a solution in the form of a benign therapy entailing promises of the good life, the clinical narrative becomes a moral narrative: The solution of prophylactic ICD therapy appears not only attractive but also as the only rational and morally acceptable choice: Accepting the therapy becomes the right thing to do, and the good patient willingly does so. Moreover, certain actions are impeded (Koch & Svendsen, 2005), because the offer of prophylactic ICD therapy becomes almost impossible to decline.

Other, more nuanced perspectives on prophylactic ICD therapy coexist in the clinic. The day before John’s implantation, a cardiologist tries to make sure that John knows what lies ahead of him by elaborating on possible side effects and complications: “Once you proceed, you have to accept that it may not help you, and that there’s a risk of potential complications. Also, some people have emotional reactions—mostly, younger people who are not sick to begin with.” Awareness of potential emotional reactions and complications are also expressed in the national recommendations for the use of ICD therapy (Danish Society of Cardiology, 2006) and the guidelines for nursing ICD patients. Reactions to be expected, according to the guidelines, are “shock,” “crisis,” “feelings of dropping into a black hole,” and “feelings of doubt and powerlessness” as well as “delayed grief reactions” in both patients and relatives (my translation). After Robert’s implantation, a nurse prepares him for emotional reactions:

If you should happen to become anxious about receiving a shock—some people do when they return to their home; they worry about “what if”—then don’t feel weird about it. Contact your GP and get an appointment with a psychologist or call us so we can talk about it.

However, these downsides of prophylactic ICD therapy are not mentioned when the therapy is introduced to the patients.

Remote monitoring is usually presented as an advantage for patients, sparing them many in-clinic visits and ensuring more frequent monitoring and, hence, better patient management. During Kate’s first follow-up visit a month after implantation, a technician tells her that “you’ll get a box to take home, so you won’t have to come to the clinic for another two years. That way, every morning, we can see what I can see now [on the monitor screen].” Thus, remote monitoring is presented as a solution to the problem of patients having to attend half-yearly follow-up visits, which was the case before remote monitoring was introduced. The remote monitoring box is handed to the patient not as an offer, but as a given part of ICD therapy. The patients react with silent acceptance; they simply take the box when it is handed to them. Only very seldom, someone refuses to bring the box home, a technician says.

Clinicians’ belief in the solution model⁴ causes some issues in the introduction to prophylactic ICD therapy to become unimportant or redundant. First of all, risk of death is strikingly absent. Death lies at the center of concepts such as “lifesaver” and “life insurance” and their use implies that death is dogging the patient’s footsteps. Yet, the risk of death is not articulated. The use of expressions containing the word “life” means that risk of death comes to constitute only a minor element in the introduction to the solution model, while promises of the good life are fore fronted. However, even if patients are prevented from dying from a cardiac arrest, the neglect of a discussion about death ignores the fact that these patients are seriously ill and makes the future of ICD patients appear disproportionally bright—almost as if death is avoidable (Pollock, 2008) and life can be extended eternally if only the risk of SCD is treated (Shim et al., 2006). A related issue that is trivialized in the clinical narrative is the severity of the underlying disease that led to the offer of ICD therapy. The problem of severe heart disease is only verbalized in a passing remark even though, ironically, prophylactic ICD therapy extends life with heart failure (Kaufman et al., 2011). The good life provided by ICD therapy is emphasized despite the fact that the ICD makes neither the heart work better nor disease symptoms disappear, and the problem of the risk of SCD seems to appear as the only problem. A third issue barely articulated in the introduction is the physical and mental impact of shock therapy, although numerous studies document that shock therapy hurts and creates anxiety (see, for example, Dickerson, 2002, and Pollock, 2008). A final issue that is one-sidedly described is remote monitoring. It is presented as an advantage for patients that enables instant monitoring and solves the problem of semiannual in-clinic visits, whereas other problems, such as feelings of incoherence, deactivation, and disconnection from the clinic, that have been shown elsewhere (Grew & Svendsen, 2017) are not mentioned. Tellingly, the interviews showed that precisely these four aspects of ICD therapy—the risk of death, the severity of the underlying heart disease, the risk of shock therapy, and disadvantages of remote monitoring—come to loom large in the everyday lives of patients.

The Solution of Prophylactic ICD Therapy in Everyday Life

Generally, the interviewed patients were optimistic, grateful persons whose life was exactly as it used to be, who never thought about their ICD or their illness, and who did not experience any problems either physically or mentally. In describing their new ICD as a “life insurance,” patients adopted the vocabulary of the clinicians and added expressions such as “bonus,” “little helper,” and “new best friend” to it. “I feel like I’ve won the lottery; I’ve been promised another twenty years,” said Kate. Other patients told me their ICD has added new meaning to their life. The promises they had been given infused their stories with hope. They hoped they would no longer be tired or out of breath and would be able to do the things they used to do: “I just hope to be able to go bicycle riding as I used to. I haven’t done that since I got ill,” Kristin said, and she continued, “I can’t wait to get my life back!” Brigitte joyfully said, “I believe I’ll be allowed to celebrate our 50th wedding anniversary!” Patients, thus, reproduce clinicians’ expectations of a benign therapy that provides the good life and seek to satisfy expectations regarding the behavior of the good patient when they not only willingly but also gratefully accept ICD therapy. The induction of hope is a colonization of the future (Giddens, 1991) that minimizes negative experiences and facilitates others: Conceptions of the good life provided by ICD therapy take center stage, while the risk that the technology “treats” does not appear in these patients’ experiences. However, in addition to narratives of hope and gratitude reflecting patients’ acceptance of the solution model, diverse and conflicting patient narratives emerged. In the following, three patient cases serve to illustrate points that were found to prevail generally in the interviews.

Losing the Ability to Provide for Oneself

“Having a heart disease is not like having a bad knee. If the heart stops, you die!” says Brian, 33. He was diagnosed with severe heart failure 5 months prior to his implantation. Both, the severity of his disease and the prospect of ICD implantation, were shocking, as he “thought it usually struck elderly people.” It has huge consequences for his self-understanding, particularly because the disease has forced him to leave the labor market. “I can’t stay at home. I’ve never done it before, so it’s tough having to,” he says. Regarding the possibility of reeducation, he says, “I honestly don’t know what else I could do. If I can’t do some sort of physical work, then I don’t know what to do, because I’m not the kind of person who can learn something from a textbook.” He is anxious about the financial consequences of his retirement, such as the risk of having to leave his flat. He expected to get better after implantation because his ICD is combined with a pacemaker; but, 8 months later, symptoms still inhibit him from engaging in many of his favorite activities such as fixing cars and bicycle riding. He hoped to avoid hospitalization but has already been hospitalized several times since the implantation. Nevertheless, he has made a conscious decision not to think too much about his disease and the risk of shocks “because otherwise I’ll go crazy,” he says.

Tenna, 50, has also been forced to leave the labor market due to heart failure and the overwhelming exhaustion that follows. Her heart disease, which was diagnosed only 6 weeks before she was introduced to the option of prophylactic ICD therapy, is a shock, and the implications for her self-understanding are severe: She used to be an independent, hard-working woman who “could manage 10 tasks at a time,” and now she has to start a new life as a weak heart patient on retirement pension, insecure about her ability to provide for herself and dependent on an ICD, which she associates with much older and sicker patients. Shortly before her implantation, she neither looks nor feels severely ill, and she has difficulties believing that she really needs an ICD. During her first follow-up visit, she tells the nurse,

I’m going to have an acceptance problem! I’m not going to become one of those patients who are totally unaffected, because I’m 20 years younger, and my level of activity is completely different from theirs! I find it very strange that I have to have something inside my body controlling my heart, and I can’t accept that I need it at all!

She asks about the prospects of her heart disease abating and having the ICD removed. Seven months after implantation, the ICD still bothers her: Sleeping on her left side is impossible, and so is wearing a seat belt in her car. She used to exercise frequently but has become insecure about how much physical activity her heart can manage. For Tenna, the ICD comes to stand as a symbol of the disease, a manifestation of her risk of death and the severity of the disease. In everyday life, pain and the visible presence of the device in the chest are constant reminders of illness. “There’s a minor pain near my collarbone. It’s not unbearable, but it reminds me of the ICD. I’m sick of thinking about it; it makes me sick to my stomach,” she says. Due to the bulge on the skin on her chest, she refrains from wearing the feminine clothes she used to. Brian reveals similar experiences: “Every time I look in the mirror, it reminds me that I’m sick,” he says.

The statements by Brian and Tenna suggest that they experience the ICD both as an assurance of immortality and as a reminder of their mortality, a harbinger of death (Pollock, 2008). Yet, their risk of death appears less important to them than the inability to provide for themselves. To get at the difficulties Brian and Tenna have living with ICD therapy, Jackson’s (1998) understanding that events caused by external forces may be experienced as a loss of control, makes sense because it seems that to them, sudden heart disease means losing control of their lives. Brian’s decision not to think about his disease is a way of regaining balance between controllable and uncontrollable events, between self and other (Jackson, 1998). He tries to accept the solution of prophylactic ICD therapy even though its promise of the good life remains unredeemed. Tenna, by contrast, challenges the solution model. When she asks about the prospects of having the ICD removed, she seeks control in a situation in which her death has been brought to her attention, and her vulnerability has been revealed. Hence, for Brian and Tenna, the underlying heart disease and the risk of death and disability that the disease implies have major impact on their self-understanding and their everyday lives.

The Risk of Shock Therapy

Robert, 55, is waiting for his implantation in the hospital. He is quite disturbed about the risk of “dangerous rhythms” that can lead to death, he tells me, and can hardly wait to have the implantation done. “It’s my understanding that it’ll help me, so I don’t have to be afraid it will happen—because I do get afraid,” he says. At home after the implantation the ICD in his chest appears to occupy his thoughts constantly. He is happy to have the ICD, which keeps him from worrying about “dangerous rhythms”; but, as the interview proceeds, it becomes clear that the ICD makes him worry about other things—for instance, whether high outside temperatures can harm the ICD. “I could imagine that it could get really hot if I was lying in the sun and fell asleep,” he says. He also says that he is afraid of working with electrical units. These remarks reflect an uncertainty about how the technology works and whether it will work in the critical moment. For Robert, the technology itself poses a risk: It may interact with its surroundings in ways that are beyond his control, putting him at risk. Robert, too, is retired due to his heart disease, which challenges his self-understanding but does not cause financial concerns. Instead, he worries about the risk of shock therapy. “I sometimes get a little anxious if I climb the stairs too fast, and then I take a break,” he says. This anxiety keeps him from engaging in physical activities such as bicycle riding, lawn-mowing, and other garden work, which he used to love.

In Robert’s experience, the risk of death is highly relevant. He accepts the risk of “dangerous rhythms,” even though other risks emerge with prophylactic ICD therapy. The risk that threatens the good life is no longer the risk of “dangerous rhythms” but of being treated for such arrhythmias with shock therapy. Here, risk is understood as a threat that can be fought, and this makes patients negotiate or challenge the solution that poses the threat. In these cases, risk of death has been transformed into other risks. Thus, what is perceived as a risk is situation specific and shapes patients’ behavior. Robert negotiates the solution model to make it fit together with his everyday life: He refrains from engaging in activities that he used to love. Heart disease poses a threat to the good life, and the ICD does not solve this problem; rather, it brings with it the risk of shock therapy.

Remote Monitoring and (In)Security

With regard to remote monitoring, Brian is happy to be watched over and does not feel kept under surveillance in a negative sense. “It’s a huge advantage for me. It means that [the clinicians] check if there’s anything to see every day. It’s security, and they call me if anything’s wrong.” However, he does not think that fewer visits to the clinic are an advantage. He appreciates his weekly visits to the local heart failure clinic and would not want to miss this face-to-face communication with the clinicians. “They have to be careful not to make it too impersonal and machine-like. It’s dangerous if things just run via machines,” he says. Tenna’s experiences are similar: Talking about the benefits of remote monitoring, she emphasizes its potential to facilitate the work of the clinicians but not its time-saving potential for herself, because she does not consider semiannual visits in the clinic problematic. Brian and Tenna accept the box in the bedroom as part of their treatment. “As long as it just stands there, that’s fine with me,” says Tenna. Showing me the box during our interview, she takes the opportunity to ask about its function: “How far does it actually reach? Can I place it under the bed? The light is so bright it bothers me when I go to sleep,” she says. Robert, too, is insecure about the function of the box. Less frequent communication with the clinic makes him wonder whether it works properly in transmitting his data to the clinic. “If I gave [the ICD] a knock, I could check if the box recorded it and gave notice to the clinic,” he says. Even though the light bothers him, he keeps the box within sight. “I like to see that it works. If I placed it under the bed, I wouldn’t be able to see it, and I’d probably worry about that.” Furthermore, the lack of communication in the period between in-clinic follow-ups creates insecurity about his treatment: “I’d like to be told once in a while that everything is working properly. Instead, I have to believe that no news is good news.”

Remote monitoring is presented as the solution to an ostensible problem for the patients, but neither Brian nor Tenna acknowledge the problem of frequent clinical visits that remote monitoring solves; and, for Robert, remote monitoring introduces insecurity about his treatment. Yet, by accepting the box in their bedroom, they fulfill expectations of the good patient, who willingly and gratefully accepts solutions from experts. They do not consider less frequent contact with the clinic to be an advantage. Rather, the lack of patient involvement distances them more from the clinic. Robert’s insecurity about the function of the ICD suggests that he experiences the ICD as an alien presence that does not solely serve and support his body but is also part of a network from which he is excluded. His relationship with the box is similar, and Brian and Tenna express corresponding experiences: The ICD and the box are regarded as parts of an exclusive network that primarily serves the clinicians in ways that are not fully grasped by the patients. Yet, they do feel watched over and, therefore, safe with remote monitoring. Thus, remote monitoring is not exclusively an advantage. It counterbalances anxiety by linking patients more tightly to the clinic but simultaneously distances them from the clinic, thereby adding to an experience of incoherence, deactivation, and disconnection (Grew & Svendsen, 2017).

Discussion

This ethnographic study of patients receiving prophylactic ICD therapy in two Danish hospitals found that clinicians create a narrative containing a problem of a significant risk of SCD and a solution in the form of a benign therapy that provides the good life. In this process, ICD therapy becomes a solution that the good patient gratefully accepts. In the clinical narrative, risk is overshadowed by promises of longevity and safety. In everyday life, however, things turn out to be more complex. ICD technology is not neutral but shapes patient lifeworlds in unexpected and undesirable ways. By following patients outside the hospital, the diverse experiences of ICD patients are illuminated: Pursuing and practicing “the good patient” implies that patients continuously negotiate and challenge the solution model of prophylactic ICD therapy. Before prophylactic ICD therapy was introduced, these patients did not recognize they were at risk of SCD. Pharmaceutical treatment of heart failure can keep patients alive for many years; thus, a slow death from a worn-out heart is what they expected. With prophylactic ICD therapy, a sudden death is introduced as an actual risk that can be treated, a problem that can be solved with the solution at hand, and this understanding of risk as an unquestionable fact makes patients gladly choose ICD therapy. Nevertheless, the problem of the existence of risk (Shim et al., 2006) that prophylactic ICD therapy is designed to solve is not eliminated from patients’ lives; instead, the ICD and the risk of death are omnipresent. They are shocked by the severity of the disease and its consequences for everyday life. They struggle to incorporate the solution into their embodied reality, but physical limitations—particularly, loss of the ability to work—create a sense of losing control of one’s life. When the promise of the good life remains unredeemed, anxiety arises, and patients’ self-understanding is challenged. Moreover, patients’ understanding of the heart as a vital organ and their experiences of the existential aspects of possible death and disability conflict with the clinical understanding of the heart as a controllable muscle and death as preventable. Patients’ experiences of shock therapy and heart disease as threats to their self-understanding and the good life contrast with the clinical conception of the good life as safety from risk of death.

Prophylactic ICD therapy builds on a range of understandings (Jöhncke et al., 2004; Koch & Svendsen, 2005)—namely, understandings of risk as a problem to be solved, the heart as a controllable muscle, and death as preventable as well as an understanding that the good life equals safety, longevity, and absence of risk. The analysis revealed how the solution model emphasizes one solution and one problem only, whereas other issues—the risk of death, the underlying heart disease, the impact of shock therapy, and disadvantages of remote monitoring—are minimized in the clinic. These aspects of prophylactic ICD therapy are lived out every day by the patients. The solution of prophylactic ICD therapy ignores the experience of living with heart failure and introduces new problems to the everyday lives of patients such as the risk of shock therapy and disability. For the patients in this study, the good life does not equal a life without risk of SCD but, rather, a life without severe heart disease and without fear of shocks. The article shows that clinical interactions emphasize prophylactic ICD therapy as an option for driving into the world in a Roll Royce, conquering death. Nevertheless, the experiences of the patients in this study are far from this image. Analyzing prophylactic ICD therapy as a solution model, the article has illustrated how decision makers—when predefining solutions and corresponding problems—trivialize problems that come to loom large in the lives of the patients. By paying attention to the diverse implications of ICD therapy and heart disease for patients’ everyday life—in particular risk of death, feelings of loss of control, loss of the ability to provide for oneself, shock therapy, and remote monitoring—the clinicians could prepare patients better for what is imminent when they leave the hospital with their new ICD.

The article is based on an ethnographic study that explores a limited number of patient cases in depth. The analysis cannot—and does not aim to—reveal definitive truths applicable to a certain proportion of all prophylactic ICD patients. Also, the material is not sufficiently large to compare the experiences of women and men, young patients, and old patients or patients with different work statuses. What can be seen in the material at hand is this: Experiences of loss of control are more common among those of the 12 patients who are in the labor market by the time they become sick than among the patients who have already left the labor market; insecurity about remote monitoring is more common among older patients; and, the implications of the underlying heart disease are more difficult to accept for younger and recently diagnosed patients among the 12 interviewees. Further research aimed at mapping the prevalence of the experiences described in the general population of ICD patients would be relevant, just as a larger material would allow for interesting comparisons of the experiences of, for instance, patients who are in the labor market with those who are not, or women in the childbearing age with older women.

Footnotes

Declaration of Conflicting Interests

The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Danish Agency for Science, Technology and Innovation and Medtronic Danmark A/S.

Notes

Author Biography

Julie Christina Grew obtained her PhD from Centre for Medical Science and Technology Studies at the University of Copenhagen. Her research focuses on medical and telecare technology, patient-technology-society relations, and chronic patient care, particularly how patients, healthcare professionals, and technology mutually shape each other in clinical practice and patients’ lives.

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