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How Ethical is Organ Transplantation?

Moving an organ from one body to another might not seem as anything more than replacing one broken part with a functional one. However, according to Professor Margrit Shildrick, the operation has far-reaching implications for how the recipients understand themselves. 

Image of Professor ShildrickProfessor Margrit Shildrick has focused in her research on human bodies at their limits. Her current interest lies in heart transplantation and questions concerning the embodied subjectivity of heart transplant recipients. She has recently been involved in a research project where she and her colleagues have interviewed people who have undergone heart transplantation.  According to her the personal experiences of persons entering the transplantation clinic differ drastically from what is expected in the medical discourse.

– What you have in transplantation is an authorized narrative and this is the narrative that the recipients and their families will meet in the clinic. It is very much a Cartesian one which emphasizes the split between the mind and the body and views the operation as a spare-part surgery having no existential implications to the recipient.

However, according to Professor Shildrick, both the donor families and the recipients tend to see the operation as something substantially different from a simple swapping of one organ for another. Whereas some donor families hope that the deceased donor will continue to live on in the donated heart, some recipients experience a change in their sense of the self. Both of these experiences do not fit to the clinical discourse. In addition, the speculations and beliefs some recipients express about their donors quite often turn out not to be true:

–  Quite interestingly, nobody’s speculations and beliefs about their donors were right in the first cohort we interviewed. People would say, “I know for sure that I got the heart from…” and then they would give a list of characteristics of this person to explain their feelings of transferred identity and they were all wrong. They were absolutely certain in their own mind that this is where the heart came from which would then explain how they were feeling and it was absolutely fascinating how wrong they were, even people who had heard the nurse talking about where the heart came from or who tried to trace it by themselves. However, we were never concerned whether it was true or not but only with why people feel like that

In Professor Shildrick collaborative project she has uncovered is a high level of distress among the recipients caused by an ontological crisis on the level of their sense of their selves. She describes how this distress may later escalate and even manifest itself on a physical level:

–  The average time people live if they get past the first year is approximately 12 years before you either die or need a new heart. But what tends to happen after few years  is a sort of ontological crisis. After about three years, when the initial euphoria of sheer survival starts to gradually wane, people start to question if it’s just a spare part. There are quite a number of cases where people who are clinically very stable will have some kind of psychological shift on how they understand it. Once such a crisis starts to happen they begin to go downhill, partly because the clinical stability relies on absolute drug compliance and people start missing their drugs.

The clinical measurements, such as Atkinson’s scale of happiness, tend to be oblivious to this emerging ontological distress since they focus more on what people are able to do, instead of taking into account what they feel. Whereas clinical studies have claimed that 80 per cent of heart transplant recipients fall on the happiness side of the scale, Professor Shildrick’s project, by listening to the personal stories of the recipients, has revealed that approximately 75 per cent of them are feeling distressed for many years after the operation.  This is something that biomedicine, having a grave concern for improving the continued recovery rate in heart transplantation, should take into account.

However, Shildrick says that the issue has deeper roots in our cultural imaginary which makes it more complex and difficult to tackle.  This imaginary affects our ideas of what a normal body should be like and what constitutes the abnormal. Therefore, what is at stake in the last instance is nothing less than our whole understanding of ourselves as embodied beings:

–  If you have a cultural imaginary that is broadly speaking based on the Cartesian view of the body, it is very difficult not to be disturbed if your body does not fit it but is inherently hybrid after transplantation.  The cultural imaginary does not deal with hybridity but sees human beings as independent sovereign subjects. This is so deeply imbued that it becomes an enormously difficult question about how you would actually make a difference instead of just fiddling around the edges. You can give people more counseling and allow their narratives to emerge in all sorts of ways but, I suspect that they will still get laughed at and they would not be taken seriously in many cases, particularly if their stories turn out not to be true.

The imaginary is also deeply rooted in the field of science as members of Professor Shildrick’s team have discovered.

– When we gave our first big paper, in a scientific conference, very few people were willing to engage with us, because we had said something out of line.  It’s a very difficult situation where you have a skeptical audience but the skeptical view is there in order to justify their work. How could you convincingly argue something that changes everything they do? It wouldn’t necessarily mean that their work would not have any justification anymore but the Cartesian justification is the main one now and that’s the problem.

What could then be the point of departure for scrutinizing the Cartesian cultural imaginary? According to Professor Shildrick, the first step is to be open to change the way how one thinks. However, considering that this imaginary is at work in serious and very much personal issues such as heart transplantation, this also poses ethical challenges to the researcher herself:

–  I do not quite know what you do to change the cultural imaginary except start from the position of trying to think otherwise about it. It’s not a program; it does not say do this and it’ll work differently. Instead, it asks can you think it differently and then, as you think it differently, could people start to understand it better on some level which is a very hard task and I’m not convinced I know how you do it. I’m very skeptical about heart transplantation and I kind of think that maybe you should just say it’s unethical. As you probably know, fully informed consent is seen as the major bedrock of any biomedical procedure, but I am not convinced that transplant recipients are fully informed.  I do not think you should let so-called consent people undergo such a major intervention into their bodies without explaining in far more detail that although the clinical prospects of recovery are very good, it may also cause profound and ongoing distress. I’m not sure about it though because everybody wants to live and that’s such a strong thing, people would say it’s working for me and you can’t just override that.

Margrit Shildrick gave a keynote lecture at the Death and Emotions symposium organized by the Helsinki Collegium for Advanced Studies in November. She is a Professor of Gender and Knowledge Production at the University of Linköping, Sweden

 

Text: Antti Sadinmaa
Photo: Outi Hakola