Sustaining cyborgs: Sensing and tuning agencies of pacemakers and implantable cardioverter defibrillators

Introduction

Related to the development of human enhancement technologies such as brain implants, cochlear implants and nano-pills and chips, there has been a recent renewed interest in cyborgs, and particularly in new and emerging fusions of humans and technologies (e.g. Blume, 2010; Dalibert, 2014; Mauldin, 2014; Nordmann, 2007; Sandberg and Bostrom, 2006). These studies focus on new and emerging technologies. In this article, I argue that it is important to study ‘older’ and more familiar cyborgs as well. What happens to the hybrids who have lived among us for several decades already, bodies kept alive and active by internal devices that regulate their heart rhythm such as pacemakers and implantable cardioverter defibrillators (ICDs)? ¹ Despite the almost worldwide presence of these hybrids – perhaps some of whom are reading this article – there have been surprisingly few examinations of these heart cyborgs in Science and Technology Studies (STS) (for notable exceptions see Andersen et al., 2011; Bjorn and Markussen, 2013; Kaufman and Fjord, 2011; Kaufman et al., 2011; Leder and Krucoff, 2011; Pollock, 2008). This tendency to neglect the mundane is not restricted to heart devices but also includes internal devices such as knee and hip implants, although some work has been done on prosthetic limbs (Dalibert, 2014; Nelson, 2001; Sobchack, 2006).

Studying ‘the old’ is important because it enables us to include the embodied experience of what it means to live as a hybrid. A focus on existing, lived cyborgs shifts the attention away from the laboratory and clinical work involved in trying to create new hybrids, and how this may affect human–technology relations in speculative futures, towards the sites and actors and the work involved in sustaining hybrid bodies in the here and now. As I will show in this article, the fusion of bodies and technologies involves work that extends beyond the laboratory and the operating room. People living with pacemakers and defibrillators participate in a lifelong trajectory of specialized monitoring to check whether the devices still function properly, whether they need replacement, and to adjust the agencies of the devices and the heart. Focussing exclusively on new and emerging cyborgs runs the risk of creating and reifying an image of cyborgs as the result of the unlimited power of the life-sciences to improve human bodies by means of surgical intervention, ignoring that these interventions involve lifelong processes of monitoring hybrid bodies to maintain the fusion of humans and technologies. I therefore suggest that it is important to open the black box of the established merging of humans and internal devices, to understand what it means to keep hybrids alive. Living as cyborgs may involve conflicts between the agencies of bodies and internal devices as well as struggles between different ways of knowing hybrid bodies.

Hybrid bodies or cyborgs represent a crucial case for understanding human agency in relation to technology. A comparison of devices implanted in the body with external devices, which have been the major focus in STS studies on user–technology relations, reveals important differences in the ways in which we can interact with or control technologies (e.g. Oudshoorn and Pinch, 2003). Whereas external devices invite us to act in specific ways, internal devices delegate much less agency to their ‘users’. This difference is reflected in daily language as well: pacemaker hybrids are referred to as wearers rather than users, which suggests a rather passive relation to these technologies. But are people with pacemakers and ICDs inside their bodies really so passive? This article explores the kinds of agencies available to these heart cyborgs during the process of regular controls by technicians in hospitals. The surveillance of pacemaker and ICD hybrids includes many different actants (internal devices, software controller programs, bodies, patients and technicians) involved in tuning a complex interplay between human and material agencies. Based on observations of monitoring practices in a hospital in Amsterdam and interviews with patients and technicians, I present an analysis of the kinds of agencies that are delegated to and enacted by patients when they expose their hybrid bodies to the gaze of technicians. The article begins with a discussion of relevant studies to elaborate the conceptual approach adopted in this research and proceeds with an explanation of the case study and methods. This is followed by an analysis of the different tests performed during the control visits at the heart policlinic. I will argue that sustaining heart cyborgs involves two different ways of gazing into hybrid bodies in which the sensory experiences of heart patients play a crucial role in keeping cyborgs alive.

Rematerializing the cyborg

Pacemakers and defibrillators are intriguing technologies. Compared with most other widely used implants, such as artificial hips and knees, they can exert agency of their own accord, without direction from the bodies in which they are implanted. ² They are designed to regulate the heartbeat in order to prevent dangerously abnormal (pacemakers) or life-threatening (ICDs) heart rhythms. The programs of action inscribed in these internal devices concern the interaction directly between the heart and the device. Pacemakers and defibrillators make an excellent case for studying the interplay between the material agencies of bodies and technologies, but what about the agency of its ‘users’? Compared with external devices, people with heart-rhythm regulators inside their bodies cannot decide when, where or how to ‘use’ them. Medicines also intervene in bodily processes. But while one can decide to stop taking medicines, one cannot switch off a pacemaker or defibrillator. Heart patients are thus confronted with something radically new. They depend on health-care providers not only for having their pacemakers or defibrillators implanted in their bodies, they also depend on them to replace or remove them (the latter rarely happens), ³ and often have little influence on decisions about the implantation of these technologies. ⁴

The question of human agency is problematic in such cases. Technologies inside bodies challenge a longstanding tradition of theorizing human–technology relations in STS and philosophy of technology. Theories of mediation (Ihde, 1990; Latour, 2005) only address technologies external to the body, technologies that can be used at specific moments and places. ⁵ Both Latour (2005) and Ihde (1990) conceptualize the interactions between humans and technologies as finite and limited temporal events. Therefore, they cannot account for technologies that involve continuous interactions between human bodies and technologies (Dalibert, 2014; Lettow, 2011; Verbeek, 2008). Technologies implanted in bodies are not bounded by a temporality of use. Pacemakers and ICDs are implanted in bodies to stay there until the end of life. ⁶ Or, as Turkle (2008) phrases it, ‘becoming cyborgs is not a reversible step’ (p. 12). These permanent technologies incorporate programs of action that delegate no agency to their users in terms of how to interact with the devices themselves.

Technologies implanted in bodies thus do not configure the user but, as they merge with it, the body. ‘User’ is therefore not an appropriate term in cases of these human–technology relations. This does not imply that the question of human agency is no longer relevant. Understanding the agency of people living with technologies inside their bodies remains an urgent question, not only for academic reasons. Ultimately, implanted cardiac devices provide a crucial case for heart patients as well because the proper working of these devices is a matter of life and death. Of course, there may be good reasons for delegating overriding agency to the devices. Patients suffering from severe heart-rhythm problems may not be willing, or physically able, to control heart regulating devices themselves. Nevertheless, the absence of programs of action for patients still raises the question of whether people living with pacemakers or ICDs are really so passive.

How can the agency of people with technologies inside their bodies be understood? In this respect the concept of the cyborg seems to provide a useful heuristic because it highlights the merging of bodies and technologies. Donna Haraway (1985, 1991) introduced this term to refer to the blurring of boundaries between technologies and bodies, as well as other dualisms, and challenged us to rethink human ontology. ⁷ In her material-semiotic account of the interaction of bodies and technoscience, she introduced a cyborg ontology to emphasize that bodies and technologies should no longer be considered as ontologically separate but as co-producing each other. For Haraway (1991), ‘the cyborg is our ontology’ (p. 150). Although the cyborg as a concept has inspired many scholars to address human–technology relations in the past two decades, most studies conceptualize the cyborg merely as a linguistic or metaphorical entity (Sobchack, 2006). In literary and cultural studies, for example, researchers have described how bodies are depicted in science fiction and other cultural products to highlight the fusion of bodies and technologies. Whereas Haraway’s cyborg is explicitly rooted in a material-semiotic approach, the linguistic turn in many fields, including STS, has made the cyborg into a discursive entity that silences the materiality of bodies (Dalibert, 2014; Jain, 1999; Sobchack, 2006). Cyborgs have lost their materiality. Although pacemakers and other implanted technologies are frequently used as vivid examples of cyborgs, the materiality of the fusion of bodies and technologies remains unexamined. However, people living with internal devices represent distinctive human–machine hybrids in which the material agencies of bodies and technologies are inextricably entangled. Or as Pollock (2008) put it in her reflection on ICD patients: ‘there is no self that is independent of the device: patients and defibrillators are one’ (p. 12).

Inspired by recent feminist post-humanist studies on the intimate relationships between bodies and technologies (Alaimo and Hekman, 2008; Dalibert, 2014; Lettow, 2011), I suggest that it is important to rematerialize the cyborg. Technologies inside bodies bring people living with them into closer proximity with the materiality of their bodies. The agency inscribed in pacemakers and defibrillators, for example, creates proximity to the material agency of the heart, particularly its contractions. Accounting for the materiality of intimate, lived relations between bodies and technologies, which is absent from Donna Haraway’s work as well, ⁸ is therefore a crucial step to understand how people learn to live as cyborgs. However, there is another conceptual hurdle to take if we want to understand the work involved in sustaining cyborgs. Linguistic approaches to cyborgs not only neglect the material agencies of bodies and technologies, but also silence cyborgs’ voices. In this scholarship, people living with technologies inside their bodies are not given a voice to articulate what it means to live as cyborgs (Betcher, 2001: 38). ⁹ I therefore suggest that it is important to recover the cyborg’s voice. Although a materialist approach to cyborgs is very different from recovering voices, I will use these two different ways of approaching the practical experiences of heart cyborgs to understand the work involved in sustaining their hybrid bodies. In this article, I will show how heart cyborgs try to exert control over the devices by articulating, during the control visits at the heart policlinic, their experience with the entangled agencies of the devices and their bodies.

To be sure, this embodied knowledge is not restricted to the ways in which people living with internal devices think about their bodies. As Jones (2006) suggested, experiences with one’s body are not just discursive or linguistic but include sensual experiences. Most importantly, new technologies may participate in creating new sensory experiences (Dalibert, 2014; Jones, 2006). Recent STS studies also emphasize how multiple senses – that is, taste, hearing, smell and the touch – are very relevant, but often overlooked, ways of knowing (Pinch and Bijsterveld, 2012; Rice, 2010; Shapin, 2012). The embodied knowledge of people living with pacemakers or defibrillators may therefore include new sensory experiences mediated by electric pulses and shocks that countermand or take over their heartbeats. Consequently, they have access to resources that the technician who conducts the regular controls of the devices does not have: their unique experience of how it feels if one’s heartbeat is regulated by a machine. The work involved in sustaining hybrid bodies should thus be considered as a collective endeavour of technicians and patients. ¹⁰ To unravel this collective work I will investigate how these different gazes are enacted during a control visit to the heart policlinic. How and to what extent do the gazes of the technician and the patient support or depend on each other? What happens when they conflict with each other, and which gaze is prioritized when this happens? Are patients with heart regulatory devices in their bodies granted ‘the capacity to make a difference’ (Giddens, 1984) in the work involved in sustaining hybrid bodies?

Case study and methods

Pacemakers can be described as small, battery-powered generators that give electric pulses to the heart when the heartbeat is too slow. They consist of three parts: a metal case containing a battery and electronic circuitry; one or more insulated wires, called leads, connected to the generator on the one end and the heart muscle at the other end; and electrodes on the end of each lead for monitoring the electric activity of the heart. The pacemaker is programmed in such a way that it gives electric pulses to increase the heart rate when it is slower than the programmed limit. This agency of the device is called pacing, hence the name of the device. The ICD looks very similar to a pacemaker but is designed to do the opposite. It may give very fast pulses (called over-pacing), a small electric shock (called cardioversion) or a larger one (called defibrillation) to bring the heart into a regular rhythm in the case of very fast, life-threatening heart rhythms. ¹¹ Pacemakers and defibrillators are prescribed to heart patients who suffer from serious heart-rhythm disturbances when medicines are not effective, and thus constitute a last resort treatment. They are invasive technologies, surgically implanted in patients’ bodies. During surgery, which is performed under local anaesthesia, the leads are placed first by guiding them, with the help of X-ray images, through a vein into the lower heart chamber (the ventricle). The cardiologist then connects the leads to the device and programs it. Then the pacemaker or ICD is inserted in a so-called pocket, a space that is created by the cardiologist between the muscles, usually beneath the left collarbone. Finally, the cardiologist tests the device to ensure it is working properly. Patients usually stay in the hospital overnight and go home the following day.

To understand the work involved in sustaining cyborgs, I studied the practices of gazing into hybrid bodies enacted during check-up visits of patients living with pacemakers and ICDs at the heart policlinic at the Medical Centre of the Free University in Amsterdam, the Netherlands. The policlinic employs four cardiologists, four technicians, one physician assistant and two ICD nurses. The policlinic provides various health-care services to heart patients, including implantation of pacemakers and ICDs and an extensive care trajectory before and after the surgery, including follow-up examinations. A regular control visit takes approximately 30 minutes, during which the technician runs several tests. In case of positive test results, she or he will reassure the patient that everything is okay, or re-adjust the device in case of problems encountered during the tests. At the end of the examination, the technician will give the patient the test results, which might include a request for changing medication, which the patient should give to the cardiologist at the follow-up visit.

The empirical research included observations of 10 pacemaker/ICD control visits at the heart policlinic in November 2012 and in-depth semi-structured interviews with 24 heart patients, 11 of them having pacemakers and 13 defibrillators. The patients varied in age from 24 to 86 years and included 15 men and nine women; interviews took place at patients’ homes and were conducted in the period between November 2011 and April 2013. In addition, I interviewed the two technicians I observed during the control visits, one of the cardiologists and a physician assistant of the same clinic, and a technician at another heart policlinic (the Amsterdam Medical Center) in the period between October 2012 and March 2013.

‘They can look through your skin’: exposing hybrid bodies to machines

The work of gazing into hybrid bodies takes place during a control visit in an examination room, which is situated in the heart policlinic in one of the long corridors of the fourth floor of the hospital. The light, spacious room is furnished with a recumbent examination chair positioned in front of a window with several pacemakers and ICDs on the windowsill. At a large desk in the right corner of the room are five machines, which at first sight look like regular personal computers; two large posters with pictures of pacemakers and ICDs hang on the wall. This is the workspace of the technicians. The patients’ position in the examination chair is such that they cannot look at the computer screen, except if they shift to a sitting position and turn their heads. On closer inspection, four of the five computers turn out to be so-called ‘programmers’. A programmer is a specifically designed laptop computer with a touchscreen that is used to read the information stored on the pacemakers and ICDs and to adjust the settings of the devices. It is connected to the body of the patient with a device that looks like a magnifier but without glass, put on the spot of the body where the pacemaker or ICD is implanted, usually just beneath the left collarbone muscle. The programmer is also connected to two machines: an electrocardiogram (ECG) recorder that is used when the pacemaker or ICD does not have the capacity to generate an ECG itself at the moment of the visit, and a printer to make paper records of the stored ECGs, as well as the settings, the interventions of the device and the test results (Interview, technician 1). Programmers, then, are major actants, because they enable the technician to gaze into the hybrid body of patients.

The control visits I observed all followed more or less the same procedure. First, the technician welcomes the patient and his/her companion (most patients take a close relative or a partner with them) and invites him/her to sit down in the examination chair. Following the technician’s inquiry about how they are doing since the last visit, patients give a short, or sometimes more lengthy, summary of their health condition, problems with their heart rhythm or the pacemaker/ICD or complaints about medications. During the examinations I observed, patients’ stories varied from reports that ‘they felt miserable because of severe atrium fibrillation but had not experienced any shocks’ (Control visit 2); complaints about pressure on the chest (Control visit 4) or that the medicines did not work (Control visit 8); to questions about whether it is allowed to drive a car and play billiards (Control visit 5), whether the pacemaker is always active (Control visit 3), whether the wires are broken (Control visit 2), and whether it is ‘normal’ that the ICD wanders through the body (Control visit 5); and remarks that the ICD remains ‘a terrifying device’ (Control visit 7). Patients are thus invited to share their embodied experience of their hybrid bodies. Anxiety about the device and what happens to them during the examination is a major concern for many patients, particularly when they visit the technician for the first test. During these visits, they enter an unknown territory in which they are faced with the hybridity of their bodies. Or, to quote from an interview I conducted with a female patient (age 86 years),

Then they told me that it should be examined twice a year, I thought this is very creepy. I asked whether it should be drawn out each time. I did not understand it initially. But it is nothing, you even don’t have to undress yourself. (Interview, pacemaker patient 7)

Patients learn that the devices do not have to be removed during the examination but that the technician can ‘look through your skin’, as another patient told me (Interview, pacemaker patient 5). Looking through the skin is an apt metaphor to capture what happens in the examination room. Because technicians have no direct access to the devices in the patients’ bodies, they rely on several technology-mediated readings of the hybrid body and its constituting parts. The programmer described above enables them to run several tests, including reading the ECGs stored on the device, checking the lifetime of the battery and the quality of the leads, and adjusting the agencies of the devices to the agencies of heart. In the following sections I focus on each of these tests to understand how the technology-mediated gaze of the technician is entangled with patients’ own ways of gazing into their bodies.

‘Where do the beeps come from?’ – listening to hybrid bodies

The first test the technician conducts is to check the lifetime of the battery, which is shown on the screen of the programmer under the acronym EOL (end of life). The lifetime of the battery of most current pacemakers and ICDs is six to seven years and the newest generation eight to 10 years, depending on frequency of use. When it is empty, it cannot be charged from the outside; patients have to undergo surgery again to get a new heart device (Interview, technician 3). Controlling the lifetime of the battery is crucial because heart devices simply fail to work when the battery is weak or empty. Although batteries that are almost empty shift to an energy-saving mode, this makes the heart devices less effective. In such cases, patients with pacemakers will notice that the agency of the device is no longer attuned appropriately to the agency of the heart, because they experience heart palpitations or a missed heartbeat (Interview, technician 1, 2012). In this respect, EOL is a rather ambivalent acronym because it may also refer to the risks of an untimely death, at least when it concerns an ICD. If the battery is low, the ICD does not have enough power to give a shock, or it will take longer before it becomes active, because of a longer charge time. During one of my observations, the technician told a male patient (age 49 years) about what can happen in the case of an almost empty battery. Digesting this information, the patient joked ‘then it will give half a shock’ (Control visit 2). As I noticed in other observations as well, humour plays an important role in dealing with the unknown and sometimes frightening or unpleasant experiences of living with ICDs and pacemakers. In this way, both patients and technicians often try to reduce the weight of what actually happens or may happen to patients’ hybrid bodies. In this case, the technician reacted to the joke by saying, ‘Yes, it will give half a shock. At least there is someone who is an expert in these matters’ (Control visit 2). Another example of these attempts to create a playful atmosphere is a technician’s answer to a patient’s remark that the battery can be replaced easily:

Well, I would say that if you could buy a battery at the Hema [a Dutch retailer] then we should do it. But the battery is fixed in the ICD so you will receive a completely new ICD. (Technician during control visit 5)

The technician then explains the whole procedure of the surgery. Because the patient worried a lot about the surgery (the first implantation took 5 hours instead of the usual 1½ hours), the technician decided to put the battery in a more energy-saving mode that will extend its lifetime, thus postponing the surgery for a year (Control visit 5). When technicians notice that the battery will be empty soon, they tell patients to return to the hospital for an extra control visit within a few months.

However, the responsibility to detect empty batteries is not only delegated to technicians. Patients who received an ICD with a telemonitoring function are expected to monitor the lifetime of the battery as well. When the battery is almost empty, the ICD will give three series of beeps at a pre-set time, usually at eight or nine o’clock in the morning, which introduces very specific problems for patients, as illustrated by the following dialogue (Control visit 4):

During the interviews, I learned that hearing the beeps was experienced as very difficult by many patients. Most patients did not notice the beeps immediately because they thought the sound was caused by someone or something else: a cell phone of someone nearby (Interview, ICD patients 8 and 13) or an ambulance passing the home (Interview, ICD patient 10; Control visit 8). Because of the difficulty of hearing the alarm signals of the ICD, the Dutch journal for ICD patients, STIN, launched a call to collect patients’ experiences, which triggered many reactions (Mol, 2013). One patient recalled how he went to the hospital because he thought that the beeps came from his ICD, but when he arrived there the beeps had stopped. The hospital staff asked his wife to go back home to check whether the beeps were still there. There she discovered that a smoke detector’s empty battery was causing the beeps. Another patient described that she did not pay attention to the three soft beeps she heard while cleaning the bathroom. A few weeks later she heard the beeps again, and her husband told her that the sounds came from her body. When she visited the hospital the next day, they told her that she should have come immediately when she had heard the beeps the first time. She became very indignant and told them that she had never heard the sound before – so how could she know it came from her defibrillator? She had to stay at the hospital, where they replaced the ICD the same evening. Another patient could not hear the beeps because it was very noisy around his house at the time his ICD alarm was set. He convinced his technician to reprogram the alarm signals to a more quiet moment in the morning. Other patients invented creative methods of coping. One of them switched off all electronic devices in his home, including all clocks, to make sure that he could detect whether beeps were being caused by his ICD or by another device (Mol, 2013). To recognize the beeps, a patient I interviewed copied them from a web site and stored them on his computer at home (Interview, ICD patient 10).

The beeping sounds thus introduce new sensory experiences: bodies with ICDs can produce machine-like beeps. Patients have to learn to listen, in this case literally, to their hybrid bodies. Detecting the alarm signals is not an easy task, because they need to be distinguished from the beeps of many other electronic devices in our increasingly densely populated technical soundscape. Patients’ stories illustrate that they used different techniques to learn to live with their beeping bodies. As Pols (2014) has argued, patients’ knowledge can be understood as a specific episteme, as a ‘practical knowing in action’ (p. 75). In the case of the beeps of the ICD, this practical form of knowledge was not only used to find individual solutions. One heart patient who collected the experiences of other Dutch heart patients used this information to ask ICD manufacturers to improve the audibility of the alarm signals (Mol, 2013). ¹³ An ICD User group that runs an active weblog included two recordings of the sounds to help other patients to detect the beeps. The information on this weblog indicates that listening to ICD alarm sounds is even more complicated than patients told me, because the ICD discussed at this weblog produces two different kinds of beeps. ¹⁴ For the first, discussed already above, patients have to contact the hospital; for the other one they have to take another action. When the ICD gives a steady tone at one fixed pitch the ICD has detected a magnetic field, which means that the shock function of the ICD is turned off. When patients leave the field, the sound will stop and the ICD is turned on again.

Learning to listen to and discriminate between the various beeps of the ICD is thus very important. Or, as one of the bloggers at the ICD User group summarized it, ‘that little beep could be telling you something’. ¹⁵ The sounds are not just a feedback signal of electronic devices that happen to be inside bodies. For heart patients they create an awareness of the existence and vulnerability of their hybrid bodies that can cease to function if one does not detect the beeps in time and take the appropriate action. Moreover, their new, beeping bodies may introduce an unwanted exposure to the outside world as well. As I described for other telemonitoring technologies, beeps of these devices transgress the boundaries between the public and the private because people nearby may hear the sound and wonder where it comes from (Oudshoorn, 2011). The very fact that the beeps are coming from inside a person’s body reveals the pervasive nature of hybrid bodies whose exposure is beyond the control of the cyborg.

Reflecting on these practices of monitoring the lifetime of batteries, I conclude that there are two different ways of gazing into hybrid bodies. Whereas the technician relies on data produced by the programmer, patients use their newly acquired auditory skills. These gazes do not compete, but instead supplement one another. However, the patient’s gaze is crucial in case the batteries drain faster than expected. Patients are thus far from passive in sustaining cyborgs, but participate in sustaining a part of the cyborg heart that is crucial for keeping hybrid bodies alive.

‘Don’t be frightened, I will take over your heartbeat’: intervening in the agency of the heart

New technologies, new bodily sensations: this is definitely the case for ICDs. In addition to introducing new auditory experiences, the ICD also leads to new ways of sensing the activity of the heart. During one of the tests used for examining the leads, the technician investigates how much current is required for over-pacing. During this so-called threshold test, the technician gives electric pulses via the programmer to stimulate the ventricle of the heart, thus accelerating the patients’ own heart rhythm. The technician will continue to do so until the heart reacts by missing a beat (Interview, technician 1, 2012). What actually happens during this test is that the technician takes over the control of the patient’s heart rhythm by intervening in the agency of the heart. Patients can feel this intervention because it disturbs the normal contraction of the heart and the blood circulation. By pacing the ventricle to a faster rhythm than the atrium, the two parts of the heart will work against each other and pump the blood in competing directions. Patients can feel this as heart palpitations or a missing heartbeat. Although the test often lasts just one minute, it may take longer if the technician is inexperienced or unsure about the test results (Interview, technician 1).

During the observations and the interviews, I learned that many patients did not like this ‘hacking’ of their heart (Interviews, ICD patients 5, 10, 11, 13). One of them complained, ‘I don’t like these tests. Imagine if they would switch it off’ (Control visit 5). Patients become even more alarmed if technicians do not warn them when they begin the test: ‘What are you doing to me? You should not make such a mess’ (Control visit 5). A female patient, age 43 years, told me about her experiences when technicians conducted this test in the hospital ¹⁶ after the implantation:

You are used to it that your heart beats by itself and now they can steer it, that’s so strange … I told them I had a strange feeling, it was tic, tic, tic, I said what is this? It bothers me, what are you doing? They said, oh can you feel this, you seem to be very sensitive. I told them that I did not care about being more sensitive than others and that I suffered from it. They can steer my heartbeat while I cannot do anything against it. They could keep doing this permanently, you know. I trust them in a way but it is just very strange … Well, you can see what emotions it triggers, this is what bothers me most [she cried when she recalled this memory]. (Interview, ICD patient 13)

For some patients, the very idea that a technician can take over the control of their heartbeats is a frightening experience. One patient therefore always asks the technicians who do this test during the control visits to warn her beforehand. To be better prepared for these regular controls and to reduce her anxiety for this test, she even decided to participate in an ICD research project that involved provoking heart-rhythm disturbances by pulsing the heart, just to get used to the idea that someone else was in control over her heartbeat, ‘to make the feeling my own’ (Interview, ICD patient 13). Although there may be different policies in different hospitals, the technicians I interviewed are very much aware that the threshold test can be very disturbing for patients; sometimes patients even panic and have to be calmed down (Interviews, technicians 1, 3; Control visit 1). To make this test less disturbing, the technicians I interviewed usually conduct a more ‘patient-friendly’ test. Only when they cannot properly observe the reaction of the heart to the pulses will they fall back on the standard test (Control visit 1).

This testing of the leads not only introduces new experiences for patients but also does so for technicians:

I have worked here for four years already and I am still amazed that this can be done … If you examine patients I will always tell them: ‘don’t be frightened, I will take over your heartbeat’, and when you think about it, it is very peculiar that this can be done all together … You take over the electric stimuli of the heart and the whole hemodynamics [blood circulation]. (Interview, technician 3)

Or, as one of the other technicians told me,

You may switch off something accidently or forget to switch it on again, or you may push the wrong button. Once it happened to me that a patient fainted when I lowered the voltage during the threshold test. Patients who don’t have heart rhythms themselves anymore may even die if the pacemaker is switched off. (Interview, technician 1)

To avoid mistakes, this technician developed the habit of speaking aloud, mentioning everything she did during the tests, to make sure not to forget anything. This talking aloud serves another important function as well: patients are kept informed about what is happening during the examination. Reflecting on what happens during the examination of the leads, I conclude that gazing into the hybrid body is not restricted to just looking. By taking over the patients’ heartbeat, technicians intervene actively in the hybrid heart. This intervention introduces new ways of sensing the activity of the heart, particularly the contractions of the different parts of the heart, which can be taken over by the technicians and his/her programmer. This ‘hacking’ of the heart makes the patient’s heartbeat completely dependent on the intervening gaze of the technician and illustrates the precarious nature of the work involved in sustaining cyborgs. Compared to the examination of the battery, this part of the control visit does not include any collaborative work. The testing of the leads is solely in the hands of the technician. Patients are expected to submit their bodies to this test, although assertive patients may ask for a more ‘patient-friendly’ test or develop techniques to learn to cope with these new bodily sensations.

‘I am so tired’: tuning conflicting agencies

Compared with ICDs, pacemakers introduce very different experiences and challenges for patients and technicians. As Lucie Dalibert (2014) has described for spinal cord stimulation, ‘bodies don’t incorporate technologies effortlessly and without any resistance’ (p. 14). In the case of pacemakers, bodies might resist because of an inappropriate tuning of the device to the heart rhythm required by specific movements. Active bodily movements require a faster heart rhythm in order to pump oxygen-rich blood to the muscles. The pacemaker should be adjusted in such a way that it supports and does not constrain patients’ actions. Usually, the fine-tuning of the conflicting agencies of the pacemaker and patients might take 2 months, but patients with an active lifestyle, usually people under 60 years, tend to visit the technician more frequently and over a longer period of time. Particular patients who are active in sports face serious problems if they want to continue the sort of life they lived before (Interviews, technicians 1 and 3). When this happens, technicians and patients engage in an effort to find the optimal fit between the agency of the pacemaker and the patient. The following dialogue during one of the control visits I observed illustrates nicely what this process entails:

As this dialogue shows, patients’ embodied knowledge of their hybrid body plays a key role in the process of fine-tuning. Most importantly, an inappropriate adjustment of the pacemaker may lead to feelings of tiredness, one of the ‘biggest complaints’ of pacemaker patients (Interviews, technicians 1 and 3). During the interviews, many patients told me that they were very tired in the first month following the implantation of the pacemaker. They often felt weary or exhausted, particularly during efforts such as fitness and other sports, working in the garden, or taking long walks, but also during less strenuous activities in the home such as walking upstairs (Interviews, pacemaker patients, 1, 2, 5, 6, 7, 9, 11). Or as one of these patients explained,

In the information leaflet they explained that you could do almost everything again after the operation. Well, I was very disappointed about it, I could not walk long distances, I could not bike. I could feel the pacing of my heart ventricle, I also had complaints walking up and down the stairs. They told me to do it more slowly. But I am not like that and I cannot change my character anymore, I am very lively and do things very rapidly. The pacemaker cannot keep up with me. I am faster than the pacemaker. (Interview, pacemaker patient 2, 2011)

Patients may not only feel tired but also experience feelings of agitation and pressure (Interviews, pacemaker patients 1, 3, 5, 8, 9). Based on patients’ complaints, technicians will try to adjust the devices in ways to benefit patients most. According to one of the technicians, this is the most fascinating, but also difficult, part of their job:

The most fascinating part is to adjust a device in such a way that the patient derives benefit from it. Do you play sudokus? It is like a puzzle, if you do it all well it fits in, but if you make an error then it does not fit in anymore. It is always nice to see if you can adjust the device in such a way that the patient benefits and that it balances all together. It is never the same. For each patient it is different. (Interview, technician 1)

In practice, this fine-tuning of the agency of the pacemaker of the individual patient is a process of trial-and-error. Technicians will select one of the available modes, ranging from normal to moderately aggressive to very aggressive. These terms refer to the time required before the pacemaker reacts to an increase in the frequency of the heartbeat caused by the patient’s activities. After changing the adjustments, technicians invite patients to learn how this adjustment works for them during the next couple of weeks and, if it does not improve their condition, to come back for another control visit. This practice shows the precarious nature of fine-tuning the agencies of the pacemaker and the patient, of finding the optimal balance between conflicting agencies. If technicians select the ‘normal’ mode it may constrain patients’ activities too much; if they choose the aggressive mode it may induce feelings of agitation because the pacemaker increases the heart frequency unnecessarily during relaxation (Interview, pacemaker patient 1; Control visit 10). Although patients’ embodied experience with the pacemaker is a crucial resource for fine-tuning, technicians are only inclined to change the adjustment of the pacemaker if patients are very assertive in articulating their complaints. Sometimes, patients may ask for a specific re-adjustment of the pacemaker, but technicians will only take their suggestions into account if they know them very well, because of a trajectory of fine-tuning the pacemaker:

By that time they know that a specific medicine requires a less aggressive mode of adjustment and another medicine a more aggressive one. Within restrictions we listen to patients, but they cannot demand that we switch it to a faster or slower mode. But if I don’t know them I tell them: you don’t know my job and I don’t know yours so let’s keep things separated. (Interview, technician 1)

This quote illustrates the point that patients not only have to have some understanding of which complaints can be related to the pacemaker but also need skills to monitor changes in their bodies related to medicines, and then to articulate this embodied knowledge. In addition, technicians prefer patients to engage in pacemaker control at a single hospital; when technicians do not know a patient very well, as happens with referrals from other hospitals, they are not inclined to re-adjust the device, or do so only after consulting the cardiologist.

Who can make a difference?

Patients thus need to be assertive and to show that they know what they are talking about, in order to be allowed to play an active role in re-adjusting the pacemaker. Some patients I interviewed were very well informed about what pacemakers and medicines do to their bodies. From the moment they were diagnosed as being in need of a pacemaker, they began to search for information, to be prepared for the operation. As has been described for other patients as well (Henwood et al., 2003), they searched for information on the internet, studied the information leaflets of the hospital, or talked with relatives or friends who have pacemakers. However, they used other techniques as well. Some patients built their own expertise by measuring their pulse to assess the impact of medicines on their heartbeat, or by examining their heart rhythm early in the morning before getting up (Interviews, pacemaker patients 2, 6). Other patients kept a diary about the periods in which the pacemaker constrained their actions or when they experienced heart-rhythm disturbances (Interviews, pacemaker patients, 1, 3, 5; Control visit 3; Interview, technician 1). These diaries are used in processes of fine-tuning and to create continuity between patients’ embodied knowledge and the interpretation of ECGs. During control visits, technicians and patients devote considerable time to interpreting ECGs stored on the device, to learn about past heart-rhythm disturbances. The ECG data stored on the pacemaker gives exact dates and moments of all rhythm disturbances, and this can be compared with patients’ notes or memories about what they were doing at specific moments and what they felt.

Patients who use these techniques, almost half of the patients I interviewed, are expert patients (Epstein, 1996). They actively engage in appropriating scientific-medical and technical knowledge and terminology to understand and talk about how the pacemaker intervenes in their heart rhythm. One of them, who used to work at a technical university, used his knowledge to negotiate a specific re-adjustment of his pacemaker:

A pacemaker also has a function to intervene in atrial fibrillation. I did not like the adjustment because my heartbeat increased enormously during running. I became aware of this because I was agitated and by measuring my pulse. I discussed this with the technician and told him my interpretation: that very complex physical and chemical/biological processes occur in the heart. What the pacemaker does to suppress this is very primitive, so to speak … In my case, the pacemaker rushed my heartbeat, so this function has been switched off. (Interview, pacemaker patient 11)

Expert patients’ active engagement is not only a resource in negotiating re-adjustments of the pacemaker. It also enables them to regain control over their life (‘I don’t feel a victim, then’), or to reduce anxiety:

A pacemaker is a very scary thing. What should it do? What will it do? I have solved this problem by informing myself about it very well. In this way the anxiety you experience in the beginning diminishes. Maybe you might become more scared if you inform yourself, but in my case the anxiety disappeared. (Interview, pacemaker patient 11)

Although some patients have the knowledge and skills to be actively involved in gazing into their hybrid bodies, not every patient is willing or able to do so. Limited education, anxiety about the control visit or a timid attitude towards medical professionals (more frequently experienced by the elderly, who constitute a major part of this patient population) constrain the possibilities of raising their voice. To be sure, this does not imply that all patients would necessarily become more active during the control visit if they had the required resources. Some patients do not want to engage in any conversations with the technician, whether because they wish to trust the pacemaker and the technician or because their pacemaker works very well (Interviews, pacemaker patients 4 and 10).

Patients position themselves differently when it comes to building trust and articulating their embodied knowledge. At the extreme end of the spectrum, there are patients who cannot express themselves, even if they want to or attempt to do so, for example people with cognitive impairment or suffering from dementia. During my observations of the control visits, I witnessed one of them: a man, age 42 years, with Down’s Syndrome. This patient, accompanied by his mother, could not express himself verbally, so he depended on his mother, who acted as his spokesperson. During the tests, the posture of his head suggested that he was listening carefully to the conversation between the technician and his mother and he tried to look at the screen but he could not see anything because of his recumbent position in the examination chair. He mentioned at one point that he did not feel well. After the technician completed the tests, the patient gave a deep sigh, put his arm around his mother’s shoulder, and thanked the technician. During the visit, the conversation between his mother and the technician developed as follows:

This dialogue shows that control visits do not always result in a mutually shared assessment of the pacemaker. In this case, the gazes of the technician, who acts as spokesperson of the measurements, and the mother, who articulates the bodily experiences of her son, contradict each other. Although the technician and the mother try to create continuity, they fail to achieve it. In the end, the technician prioritizes the test results over the patient’s embodied knowledge and delegates the problems to a health-care professional. Adjusting the agencies of the pacemaker to patients’ activities involves a close collaboration between technicians and patients, in which the latter’s embodied knowledge is an important resource. However, patients can only make a difference if they are assertive and can articulate their embodied knowledge verbally.

Conclusion

Reflecting on the two different approaches I used to understand the work involved in sustaining cyborgs, the article shows how they come together in interesting ways. The attempt to rematerialize the cyborg makes visible how internal devices bring the people living with them into close proximity with the materiality of their hybrid bodies, by creating new bodily sensations. I have described how pacemakers and ICDs participate in materializing specific types of bodies, for example, bodies that can only be active and survive because of the electrical pulses generated by these devices. In this process, people living with pacemakers and ICDs become more intimate with the hybrid materiality of their bodies by sensing the technology-mediated working of their hearts. For people living with ICDs, this involves new auditory experiences to detect the beeping sounds of the batteries of the defibrillator and new ways of sensing the entangled agencies of the device and their heart contractions. For people living with pacemakers, the internal devices not only introduce new sensory experiences but also transform familiar bodily sensations, particularly fatigue. Although these patients may have experienced tiredness before, it gets a new meaning: it becomes a signal that their bodies can no longer do what they used to do pre-implantation. As Grosz (1994) has described for other bodies, hybrid bodies are not inert. In the case of pacemakers, the body reacts to the electrical pulses of the device. When patients are active and their pacemakers have not been appropriately adjusted, hybrid bodies may protest, which patients experience as tiredness. In contrast to many heroic stories of cyborgs, my research thus shows the vulnerability of hybrid bodies: sometimes hearts become dependent on machines as, ultimately, does life itself. As Bjorn and Markussen (2013) have described, this dependency involves not only individuals and their implants but also the infrastructure on which they depend, including technical networks, standards, local care regimes and national health insurance regulations (Kaufman et al., 2011). Clearly, heart cyborgs, like other cyborgs, cannot be viewed merely as discursive entities but should be considered as material realities.

Understanding the materiality of the intimate, lived relations between bodies and technologies is not enough, though, to appreciate the work involved in sustaining cyborgs. My choice to include the cyborg person’s voice enabled me to show how heart cyborgs articulate their embodied experiences with the entangled material agencies of their devices and their bodies during the control visits. In this respect, the approach of recovering cyborgs’ voices largely overlaps with the approach of rematerializing cyborgs, because they both reveal the embodied knowledge of people living with internal devices. As Pols (2014) has argued for patient knowledge in general, this knowledge is a practical knowledge ‘that does not sit inside textbooks or in heads. It is part of practices, devices, and situations’ (p. 83). Keeping diaries of heart-rhythm disturbances, measuring heartbeats, listening to beeps early in the morning, slowly walking stairs, all contribute to gaining knowledge of what it entails to keep hybrid bodies alive.

Including cyborgs’ voices in this account enables an understanding of how and why some people are able to exert control over the working of the devices. Not everybody is able to make a difference in sustaining their hybrid bodies. Expert patients are much better positioned to participate in the management of their hybrid bodies. The techniques I described enable them to overcome anxieties, to express preferences for a particular test, to participate in interpreting ECGs, to negotiate a re-adjustment of the pacemaker, and to ask for a re-programming of the alarm signals of the ICD or an improved audibility of its beeping sounds. Patients who are not able to raise their voices to express their embodied knowledge cannot, or are not allowed to, take part in these interpretations and negotiations. In this respect, we should be modest in emphasizing the importance of first-hand sensory experiences in how science and technology work. The case of the patient with Down’s Syndrome indicates that gestures are not accepted as credible articulations of embodied knowledge.

As I argued in the introduction, technologies inside bodies present a complex case in understanding human agency. The ‘users’ of these technologies seem to be passive because they cannot exert any direct control on the working of the device. However, people with implanted devices are far from passive. To the contrary, they can and do act to sustain their hybrid bodies. For STS research on user–technology relations, the message is thus that internal devices also involve the agencies of their ‘users’ and that it is important to take them into account to understand human–technology relations. For cyborg theory, my research shows that the merging of bodies and technologies is not a single event. Sustaining cyborgs is a lifelong collaborative effort in which technicians and patients participate to create viable hybrid bodies. These observations are relevant not only for existing cyborgs, because future cyborgs will need to be maintained, and the agencies of their components will have to be tuned to each other in order to do so. Paying attention to these issues will help us to anticipate and assess how new and emerging enhancement technologies may affect and redefine human agencies.