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Cultural concepts of brain death and transplants
Medical technology has advanced in leaps and bounds over the past few decades. Perhaps no procedure is more wondrous, or inherently spooky, than that of removing an organ from one body and putting it into another.
PHOTO: Owen Egan
Yet with this ability to perform transplants, a moment of death needs to be recognized formally in order to legitimately remove organs from a body. Irreversible damage to the brain, coupled with the inability to breathe unaided, became known as brain death.
But how comfortable are we with declaring the death of someone who has colour in their cheeks and is still warm?
In Twice Dead: Organ Transplants and the Reinvention of Death, medical anthropologist Margaret Lock looks into organ transplantation and the concept of brain death in Japan and North America. Although roughly 50% of both Americans and Japanese are willing to donate their organs, how brain death has been approached in each country varies greatly.
When Lock, who holds appointments in the Departments of Anthropology and Social Studies of Medicine, was working in Japan on menopause and female ageing, she noticed issues about brain death were coming up in the media all the time, from newspapers and magazines to children's comic books.
"Here was something that was bothering people in Japan without bothering us in North America. This brain death problem was proving to be the biggest bioethical problem in contemporary Japan."
Lock wondered "what is it about Japanese culture that might account for all this concern about death and brain death?" Before long she realized she also had to ask why North Americans didn't show the same concern, why there was no public discussion.
"What is it about our so-called culture that allows these things to be moved through quite fast, when something like abortion does cause trouble. It's not as if there's not public concern about bioethical issues, but it varies from one place to another."
The reasons for the public stance in North America are complicated. One is that an ad hoc committee of physicians from Harvard Medical School was swift to define brain death, and this "was accompanied by quite a vigorous campaign in which the worth of organ donation was highlighted."
The promotion of this "gift of life" glossed over the sad fact that for an organ to be donated, someone had to die, and the recipient would have a life-long dependence on immunosuppressant drugs with harsh side effects. We tend to trust what our doctors tell us.
Also, "the American Bar Association immediately supported the position of the doctors. In other words there was a tacit understanding from the outset that the law would be not opposed to this change."
In the few law cases in which doctors were charged with murder (for allegedly removing organs from someone not yet dead), none were found guilty. As well, "the Pope had made it clear, very early on, that diagnosing death, recognizing death was a medical matter and not a religious matter."
But Japan had quite a different story, although there was very little religious opposition to organ donation. "On many occasions Buddhists have said that the saving of lives, and giving and being generous are very positive things.
"But the first heart transplant in Japan was a big problem," Lock says. This was in 1968, and after the brief accolades and talk of medical triumph, it was discovered that the doctor had needlessly endangered the life of the recipient (who later died) and lied about details of the procedure.
This confirmed an already strong distrust towards the medical establishment. It wasn't until 1999, after the Organ Transplant Law of 1997, that another heart transplant took place.
Also, the Japanese bar association was opposed to the concept of brain death from the outset, "partly to do with rivalry with the medical profession, but partly to do with rather conservative beliefs, concerns about tampering with the body."
Culturally, Japan is very concerned with reciprocity and was never comfortable with notions of charity and the rhetoric of "the gift of life."
"If you're giving something that is as symbolically valuable as a human organ, then surely there must be some anticipation of some sort of reciprocity. So to just give anonymously is breaking through a strong cultural tradition." Donating to strangers would also cause feelings of disquiet.
Another big difference, Lock says, is that in Canada and America "everything around you is working towards you deciding in favour [of donating]. And everything in Japan is working towards making you not do it if there's any hesitation."
In Japan, death is a socially determined event, a process, not a moment. In the intensive care unit "families are left with complete control about deciding when the ventilator will be turned off."
Lock admits this was "the hardest research that I've done in my many years." Although much of the reading was "pretty heavy stuff," it was talking to families of organ donors that Lock found toughest.
"Part of what was harrowing was not so much the horror of what had happened to people where there had been terrible traffic accidents, or something like that, but the fact that there's no resolution.
"I would find myself flip-flopping between feeling really sympathetic for people who are dying because they can't get an organ and yet we have this technology. I would feel really upset and unhappy talking to them, and I could feel their desperation.
"But then I would go to the ICU, or talk to families who chose to donate, or more disturbingly, those who chose not to donate and had to rethink through whether they felt they had done the right thing or not."
These decisions are made under enormous pressure, and often a loved one has died under horrific circumstances. Family members are asked to permit this body to be cut up and retrieved from.
"I have every sympathy for people who decide they cannot do this. As I say very clearly in the book, I still don't know what I would do if my children were young and I had to make that decision. I don't think people can think through ahead of time very clearly what they would do in that situation."
Lock is the lone anthropologist on the International Forum for Transplant Ethics and is involved with social, cultural and legal issues to do with Genome Canada. These discussions are often left to bioethicists, lawyers and philosophers -- what role can social scientists play?
Anthropologists, through ethnographic research, collect responses from those whose lives have been directly confronted with these issues. "We're dealing with everyday life. We're dealing with the impact of these technologies on families and individuals. We are the only discipline that really does that systematically.
"Sociologists, and bioethicists do survey research, and that provides another kind of information about what people believe, what their attitudes are, what their values are, but the anthropologist is doing more of the qualitative approach.
"Very often what that shows is that being on the front line of many of these technologies is very different from what the people in power are telling us what the experience is like." Social scientists can "look at the way in which scientific knowledge is actually produced and put into practice. Scientists obviously understand what they are doing, but they are part of the system.
"What we need above all is to recognize that new technologies often can bring major advances and be very helpful in many many ways. But that there is always the other side of the story as well."