Abstract
Although there exist high expectations and promises about what pacemakers and ICDs can do, technologies, like humans, can fail. These implants not only contribute to solving heart-rhythm problems, thus reducing the vulnerability of wired heart cyborgs, but may also introduce new vulnerabilities. Building resilience thus becomes a key concern for people living with implants and medical professionals. Understanding what it takes to become resilient cyborgs is crucial to account for the vulnerabilities of hybrid bodies, which are largely absent from the medical literature and patient information, without turning cyborgs into passive victims of their implants. However, dominant approaches to vulnerability and resilience are problematic because they often consider vulnerability and resilience as given or static characteristics of humans and technologies. Adopting and refining constructivist approaches, this second introductory chapter develops the argument that vulnerability and resilience should be considered as, respectively, constituted and achieved in a complex interplay with the materiality of bodies, technologies, and the socio-technical environment. In this book, I use this perspective to study what vulnerabilities and resiliencies emerge in the everyday life of people living and dying with pacemakers and ICDs.
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Notes
- 1.
For exemplary texts that inform patients about what they can expect from pacemakers and implantable defibrillators, see the websites of a hospital in the US. (http://stanfordhealthcare.org/medical-treatments/i/icd/procedures.html), the British Heart Foundation (https://www.bhf.org.uk/informationsupport/treatments/pacemakers), and device manufacturers in respectively Germany (www.biotronik.de) and the US (www.medtronic.com).
- 2.
In the past decade, the FDA has issued several recalls of models of major ICD brands because of fractured leads , including the St. Jude Riata leads recall in 2011 and the Medtronic Fidelis leads recall in 2007. In the latter case, this lead failure has been associated with the deaths of five people implanted with an ICD. During these recalls, all affected people were notified of the potential risk of inappropriate shocks, and physicians received instructions for reprogramming or replacing the devices (Frascone et al. 2008).
- 3.
Historically, medical devices have been put in use with little scientific evidence to support their effectivity and safety (Marcus 2016). Unlike pharmaceuticals, where regulations in the US and Europe date from the beginning of the twentieth century, pre-market regulation of medical devices was introduced by the FDA only in 1976 in response to growing concerns over the safety and effectiveness of medical devices. However, there still exists a difference between the introduction of new pharmaceuticals and medical devices. According to the WHO (2010), ‘new drugs must pass rigorous pre-marketing clinical evaluation (generally with at least two randomized clinical trials),’ while such testing ‘is usually not required for new devices,’ except for high-risk (class III) devices. The latter, which include pacemakers and ICDs, ‘require at least one well-designed and controlled clinical study to establish the safety and effectiveness of the device’ (WHO 2010). Criticism of the lack of regulations has also resulted in the establishment of organizations that register incidents with medical devices, such as the Dutch Foundation for Pacemaker Registration and the FDA Safety Information and Adverse Event Reporting program. Medical professionals as well as patients are encouraged to report incidents with device failure or negative side effects to these organizations (https://www.fda.gov/medicaldevices/resourcesforyou/consumers/default.htm). In 2020, the European Medicine Agency will introduce a new regulation which compels the large-scale testing of risk-involved medical aids in order to gain a so-called CE label. This label is given to products that comply with a compulsory set or requirements regarding safety, health, and the environment (de Vries and van de Graaf 2018, 28).
- 4.
- 5.
See Tseng et al. (2015), for a study of the extent to which sudden death can be attributed to malfunctioning ICDs and pacemakers.
- 6.
Tseng as quoted in Bouma (2018, 4).
- 7.
A Dutch survey of device failures of pacemakers reported that 20% of pacemaker implantations involve the replacement of these devices because of technical defects of the original implant (de Vries 2017): The Importance and Use of Registries for Performance and Safety Information on Medical Implants, by Laura M. de Vries. The work described in this thesis was conducted at the Department of Epidemiology, Erasmus Medical Center, Rotterdam, The Netherlands.
- 8.
The absence of technologies implanted in bodies in recent STS studies of vulnerability is rather remarkable. Although the thought-provoking book Vulnerability in Technological Cultures (Hommels et al. 2014) tries to cover the many facets of vulnerability and presents very interesting reflections and rich empirical accounts of the multiple kinds of vulnerabilities related to the techno-scientific character of modern societies, including the fragility of large socio-technical systems, objects, organizations, ecosystems, and people, it only addresses technologies external to bodies.
- 9.
Although there are many different disciplinary approaches to resilience, the perspectives developed in psychology are most useful to take into account because they address the ways in which people, rather than ecosystems or infrastructure, learn to build resilience. See Carpenter et al. (2001) and Manyena (2006) for a critical review of the different disciplinary approaches.
- 10.
Although there are disagreements about the field from which the term originates (ecology or Physics or psychology), most of the literature suggests that ‘resilience’ evolved in psychology and psychiatry in the 1930s (Waller 2001). One of the pioneers in psychology is the American psychologist Emmy Werner, who studied how children from poor families in Hawaii were able to cope with the detrimental situations of their family, in which parents were often alcoholic or mentally ill. The children who did not exhibit destructive behaviours were called ‘resilient’ (Werner 1989). Resilience studies in psychology were not restricted to developmental psychology but also included the field of traumatology that focused on adults (Graber et al. 2015, 7).
- 11.
- 12.
See Brad Evans and Julian Reid, who have criticized current discourses on resilience as putting ‘the onus of disaster response on individuals rather than publicly coordinated efforts’ (Evans and Reid 2014, 10).
- 13.
See Graber et al. (2015) for an overview of this extension of resilience studies.
- 14.
See for example Manyena (2006).
- 15.
The empirical data for this book are derived from a variety of sources. Chapter 3 is based on observations of 10 pacemaker/ICD control visits at the heart policlinic at the Medical Centre of the Free University in Amsterdam, the Netherlands, in November 2012. In addition, I conducted 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 and included 15 men and 9 women. In addition to differences in gender and age, the interviewees also varied in terms of education, ranging from lower to middle and higher education, as well as job stratification. Most of them were recruited with the assistance of a physician who practices in a small city in the northwestern part of the Netherlands, who gave me access to his patients who had received a pacemaker or defibrillator in the (recent) past. The interviews took place at patients’ homes and were conducted in the period between November 2011 and April 2013. Moreover, I interviewed the two technicians I observed during the control visits, a cardiologist and a physician assistant of the same clinic, and a technician at another heart policlinic (the Amsterdam Medical Center) in the period from October 2012 to March 2013. In Chap. 4, I used the same sources as in Chap. 3. To extend my data collection to a broader population than the Netherlands, I analysed accounts of people living with defibrillators as posted on the website of the US-based Support Community of the Sudden Cardiac Arrest Association, one of the few active digital fora devoted to defibrillators, with over a quarter of a million listed users, covering the messages posted between September 2007 and 31 March 2014 (accessed on 3 April 2014 and 6 April 2016; www.inspire.com/groups/sudden-cardiac-arrest-association/discussions/). In terms of research ethics, it is important to note that I have cited only the patients’ posts on the ‘shared with the public’ part of this website. Both in-depth semi-structured interviews and accounts of people living with internal heart devices on websites of online communities are important sources for studying the vulnerabilities and resiliencies of people living with pacemakers and ICDs because they give access to their own accounts of their everyday life practices and experiences of living with pacemakers and defibrillators. Online communities constitute a very rich source because they give access to the ways in which people exchange experiences with these internal heart devices among themselves. Unfortunately, I could not address potential differences in vulnerabilities and resiliencies among different ethnic groups. The participants in the interviews were all White, and the people participating in the discussions at the SCA online community did not mention their ethnic backgrounds or refer to any ethnic differences. Chapter 5 is based on the same sources used in the previous two chapters. In addition, I analysed the instructions given by Dutch ICD patient organization (STIN) and the American Heart Association about navigating airports and the use of electric and electronic appliances at work and at home. The section on hacking included in this chapter is based on an analysis of a collection of articles on the security problems of pacemakers and ICDs published by security researchers, hackers, and the U.S. Food and Drug Administration that appeared in the period between 2008 and 2018. Finally, I observed a patient education meeting at the VU hospital in the period between October 2012 and March 2013. Including health-care professionals’ accounts of the challenges people living with pacemakers and defibrillators confront in everyday day life is important because they are involved in informing patients and assisting them in coping with these problems. The use of these multiple sources enabled me to collect a wide variety of accounts of everyday life practices. Adopting a grounded-theory approach in which themes emerge from the data, I conducted an inductive, line-by-line coding of statements in the collected data about the interactions in four different spaces (the home, the workplace, digital spaces, and public spaces, particularly the airport). This data file was subsequently analysed using the conceptual framework of misfits emerging in material environments and relational aspects of embodying implants. Chapter 6 is based on the same sources as Chap. 5. To extend my data collection to include the accounts of women in particular, I analysed accounts of everyday lives posted on the websites of two additional online communities initiated by Americans living with pacemakers or ICDs: Wired4Life , a Facebook community run and used by women with pacemakers, defibrillators, and replacement valves (February 2015–October 2016) and Pacemaker Club Online, an online community founded and operated by people living with pacemakers and defibrillators for other patients and their loved ones (2009–2014). I also analysed relevant scientific articles that reported specific surgical procedures for the implantation of pacemakers and ICDs in women. Chapter 7 is largely based on the personal accounts of 3 of the 24 Dutch patients I interviewed for my research: two women aged 24 and 43, and a 79-year old man who had been implanted with an ICD for different physical reasons. This limited number of interviews enabled me to give a detailed, contextual account of the different, partly age-related ways in which people learn to cope with vulnerabilities and try to overcome the anxieties involved in living with ICDs. The study presented in Chap. 8 included expert consensus statements on the management of cardiovascular implantable electronic devices in end-of-life (EOL) care developed by the American Heart Rhythm Society (Lampert et al. 2010) and the European Heart Rhythm Association (Padeletti et al. 2010), as well as the Dutch guideline for ICDs and pacemakers at the end of life (Anonymous 2013). Because there may be discrepancies between the formal guidelines and actual practices of dying, I compared these guidelines with the ways in which the families of people having pacemakers envision and experience the dying process and deaths of their fathers or mothers. This part of my research is based on a detailed analysis of in-depth interviews with the families of three persons implanted with pacemakers, which took place in 2013 and 2014: the daughter (58) of a 92-year-old woman who wondered how her life would end because of her pacemaker; the son (63) of a 96-year old man who asked the physician to turn off his father’s pacemaker shortly before his death; and a daughter (54) who witnessed the death of her 62-year-old mother, who died when the pacemaker was still operative. Chapter 9 is based on several sources. First, I have analysed guidelines developed by funeral homes, crematories, and medical professional organizations in the US, the UK, and the Netherlands for the removal of pacemakers and defibrillators from bodies of deceased people, published in the period from 2002 to 2017. To investigate the creation of niches for reuse in the Global South , I have investigated publications about pacemaker reuse in international medical journals (1998–2018), articles by cardiologists involved in the US-based project My Heart Your Heart that aims to make previously used pacemakers available to people in low- and middle-income countries, and news media coverage of this initiative. Finally, I conducted an interview via e-mail (on 7 July 2018) with one of the American cardiologists who initiated My Heart Your Heart .
- 16.
Those who receive an ICD with a telemonitoring function are expected to visit the heart policlinic only once a year (Interview cardiologist 2012).
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Oudshoorn, N. (2020). On Vulnerable Bodies, Transformative Technologies, and Resilient Cyborgs. In: Resilient Cyborgs. Health, Technology and Society. Palgrave Macmillan, Singapore. https://doi.org/10.1007/978-981-15-2529-2_2
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