This research will undertake a sociological investigation into current practices of repairing the function and replacement of the human heart.
The aim of the project revolves around the idea of creating narratives or biographies of the implanted heart from three case studies working initially on two conceptual levels: the ‘technological transitions’ from working valve implants to devices to whole organ replacement and the biological transitions between animal and mechanical and human implants. These biographies will be stories of ethics too – values embedded in and constructed through these developments and implicated in patient experience. The biographies constructed can therefore make the links from patient experience to technological developments to the broader societal/institutional contexts of such developments.
1) to conduct a sociological study of the experiences and everyday ethics of individuals whose hearts have been augmented or replaced with animal or mechanical implants.
2) an exploration of factors that affect developments in artificial whole organ replacement (which will include economic, political, social, scientific, cultural, ethical and technological analysis).
Organ replacement and repair is a highly significant area for sociological and ethical exploration as more of us continue to live longer; estimates suggest that 30% of babies born today will live to 100 years (Christensen K, Doblhammer G, Rau R, & Vaupel J W., 2009). Statistics from the British Heart Foundation, suggest that “over one and a half million people currently living in the UK have had a heart attack, and over two million people have angina and/or heart failure” (Scarborough, Wickramasinghe, Bhatnagar P., & Rayner, 2011). The demand for heart repair and replacement will therefore continue to rise whilst the availability of sources from humans remain limited.
The Human Heart
It is little wonder that medical and scientific practice has focussed on the repair and replacement of the heart given its status as the ‘pump’ or ‘engine’ of the human body and this is why ‘Animal, Mechanical and Me’ focuses upon the implanted heart. Culturally the heart is resonant with symbolism and everyday discourse is replete with examples of the heart being tied to emotion and personhood.
Studying the heart therefore allows us to consider the intersection between medical science, embodiment, and identity as well as providing social scientific data that enriches further ethical discussion. For example, comparing the decisions taken around animal/mechanical heart valve replacement, the usage of ICDs as well as increasing reliance on Total Artificial Hearts can help unearth some of our deepest held beliefs about:
- what is it that is human about the human form and
- what effects (if any) replacing body parts has for ideas of human identity.
In some way, if our body parts represent who we are then how do changes or additions to the interiors of the body then alter our sense of self? That is, if the use of different animal / mechanical implants is progressive and science and technology gives the capability to use animal or mechanical organs, what can we learn from recipients, their families and those who seek to develop or implant the technology? Are there lessons that we can take more broadly from the specifics of the current situation around pinpointing the ethical limits to what is acceptable in the future; for example the existence of an ethical ‘slippery replacement slope’? If we completely rebuild the body through replacement is it still the same person, in the same way that if we replace the blade and handle of an axe is it the same axe?
Research questions that address the twin objectives of material replacement and technological development therefore include:
RQ 1: Porcine or mechanical implants:
How are decisions reached whether or not to implant an animal tissue or mechanical valve? What are the lived experience of their consequences for subjectivity and the ethics of survival/longevity following terminal heart disease (therefore answering Objective 1).
RQ2: Implantable cardioverter-defibrillators (ICD)
What effects do permanent ‘intrusive’ implants that emit electric shocks to the heart of individuals have on the quality of life? For example, how does it affect their relationships with others? (again, addressing Objective 1).
RQ3: Temporary Total Artificial Hearts (TAH)
These may become the answer to a full heart replacement. What are the views of those involved or interested in the (re)development and construction of the future of the technology? (relating to Objective 2).
RQ4: Ethical Considerations
How can an understanding of the context of current animal/mechanical repair enrich ethical discussions about what should be replaced in the human body, to what extent, with what material and for what reasons? (and also addressing Objective 2).
I will reflect on these questions informed by the voices of those 1) who have been implanted, 2) those who develop, regulate, and implant the technology and other interested groups, and 3) those who eventually may be affected by replacement technology of the heart.
The project will provide narratives or ‘biographies’ of the heart linking two different transitions: the biological of animal, human and machine and the technological from implants to devices to organs.
Case Study 1: Animal versus Mechanical Tissue:
To some extent we already accept spare part technology, for example, mechanical, porcine and bovine tissue have been commonly used to successfully replace failing aortic heart valves since the early sixties. Mechanical heart valves are likely to last a person’s lifetime, however, due to an increased risk of blood clotting (as well as cellular damage) recipients need to take blood thinning medication which carries with it other risks. Porcine replacements last approximately 10 to 15 years; less in younger recipients although the reasons for the shorter life span of the valves in this cohort are not well understood.
Not enough is known about how the choice of treatment is made between using animal or mechanical valves and the decision does not appear to be entirely clinically based, for example, noises that mechanical valve implants emit might irritate and annoy the recipient (A., Blome-Eberwein, Mrowinski, Hofmeister, & Hetzer, 1996). An early study with recipients who were implanted with pig heart valves showed some concern about the transference of animal qualities (Lundin, 1999; Lundin, 2002; Lundin & Widner, 2000). Quantitative research found the Swedish public more willing to accept an artificial organ (63%) with animal organs (40%) least favoured (Sanner, 1998, 2001a; Sanner, 2001b; Sanner, 2003, 2006).
Hence, Animal, Mechanical and Me can contribute directly to the little that is known of decision-making in the area of animal/mechanical implants and it can also generate wider explanations for public reactions to whole animal or mechanical replacement. Focus group studies in the UK found that the public reactions to xenotransplantation was of a ‘yuk factor’ variety a term in bioethics used to refer to a ‘morality-based disgust’; sociologically it may be more about the importance of naturalness (Brown & Michael, 2001, 2004; Douglas, 1966; Michael, 1996; Michael & Brown, 2005). Then, is ‘yuk’ about the ‘animal in us’ that challenges the natural order in a way that the mechanical does not? Or does any type of implant ultimately challenge the norm of natural:
The contemporary need for naturalness can be better understood as a response to the fact that technology makes reality more and more makeable and, consequently, more contingent. Advancing technology changes everything that is, into our object of choice…[I]f human nature itself becomes makeable, it can no longer naively be laid down as the norm (Swierstra, Van Est, & Boenink, 2009).
Case Study 2: ICDs
I will also draw upon the experiences of those who have an Implantable cardio-vector defibrillator (ICD) permanently fitted. This is a mechanical device used to treat an irregular heartbeat. It is a more ‘active’ implant when compared to valve replacement as it has the ability to emit electric shocks in patients who are at risk from death caused by an irregular heart beat.
Such devices are used as a permanent intervention and are viewed as a successful, even underused, therapy (Burns JL, Serber ER, Keim S, & SF., 2005). A qualitative exploration (from data from 200 phone interviews of people with ICDs) of perceptions, experience and decision-making of ICD patients discusses patients’ perceptions of their decision-making, categorised as ‘physical, psychological, social reasons driving agency in the decision, or no agency regarding the decision’; as well as the shape of a ‘trust relationship’ with the doctor informing the decision.
The authors cite the ‘desire to save their life (integrity of the self)’ as a significant factor in decision-making (see also Gal, et al (2011b) for quantitative results, which found a correlation between shock administered and perceived benefits of the implant). Yet others have found ICDs to cause a variety of issues for their recipients including anxiety, depression and avoidance of physical or sexual contact as well as effecting family relationships (Ahmad M., Bloomstein L., Roelke M., Bernstein A.D., & Parsonnet V., 2000; Dunbar S.B., Warner C.D., & Purcell J.A., 1993; Heller, Ormont, Lidagoster, Sciacca, & Steinberg, 1998; Luderitz B., Jung W., Deister A., & M., 1994); it is not known what causes the anxiety in patients and therefore this is a knowledge gap that this project will directly address. Further patients’ experiences of having an ICD implanted can also inform future developments relating to full mechanical heart replacement.
Case Study 3: Total Artificial Hearts
Full heart replacement does exist but is used only as temporary measure or a ‘bridge’ until a human heart for transplantation is found. Further investigation into the TAH’s past will help reconstruct the technological transitions involved in the development of the implantable heart complimenting and updating an earlier ethnographic account of, for example, the Jarvick 7 (Fox RC & Swazey JP., 1992).