Whose body is it?

Perhaps ‘medical anthropology’ has not yet become a household term. Although anthropologists still go to Papua New Guinea, Mayotte, or the headwaters of the Amazon, many now work closer to home, on the border between Notting Hill and Ladbroke Grove, or in a venture capital company that does gene-sequencing. Nevertheless, the core themes of myth, death and reproduction draw even these new anthropologists back into the traditional fold. Medical anthropologists do birth, sickness, decay and death, just as their predecessors did in Papua New Guinea.

Strange Harvest raises all the topics of the old anthropology, but in a very new context. Harvest festivals, whether American Thanksgiving or the more modest celebration in the Church of England, are about fertility: the harvest referred to here is the harvesting, in the official euphemism, of organs from dead people. This book is about a new kind of fertility called rebirth, which allows people to celebrate their rebirthday after they have received a life-saving organ. It is a book about the soul, and how much of it gets transferred when a body part is transferred from one person to another. It is about rites, myth, and how they are evolving from week to week, right now. And, as befits ethnography, it is about a new kind of kinship, whose codes are still inchoate: the new-born kinship between a recipient and the donor’s family, especially the mother.

Lesley Sharp has paid her traditional anthropological dues, studying a village in Madagascar where mortuary rituals have a central role in communal life. Now she has turned to the practices of life and death in America, in its hospitals, in the mourning of donors’ families, and in the afterlife of the recipients. She has little to say about another class of people, the living donors of kidneys and their recipients.

First a disclaimer. I am a complete outsider, not only to medicine and to surgery, but also to the culture of organ transplants. No one close to me has been a ‘recipient’, and no one close to me has died and become a ‘donor’. This is not unusual. Each year in the UK, with a population of 60 million, there are about 750 donors, and about three thousand recipients – a single donor can serve several recipients. Hence a British reader is not very likely to be closely connected with a donor or a recipient. Of course, over the years the numbers accumulate, and you are more likely to remember an acquaintance involved in organ donation than other random encounters. I recently asked a sizeable group of older persons how many were close to donors or recipients, and several said somewhat, while one was very close. But not me.

My first exposure to the subject came in a book by another medical anthropologist, Margaret Lock, whose Twice Dead (2002) is a brilliant comparative anthropology of Japanese and North American attitudes to brain-death as the criterion of death. Hence the title: a person is ‘once dead’ when technical criteria establish that the brain has stopped, while the body is still ticking over quietly on a ventilator; ‘twice dead’ when the heart is stopped and the organs harvested.

Westerners accepted the new definition of death, barely pausing to rewrite laws and reorder practices, while in Japan a quite different sense of life, death and the body held sway. To this day nearly all organ transplants in Japan are transplants of kidneys from living donors within the extended family. Lock explains why the differences are so great, and gets us to think about our extraordinary willingness to embrace brain-death as death. Incidentally, the first organ transplants were from people whose hearts had stopped, the old-fashioned dead. And for perspective, recall that Christiaan Barnard’s first foray in transferring a heart from a cadaver to a sick man took place only 40 years ago, in 1967.

The moment the heart stops, organs begin to decay. As the technology of transplanting became quite reliable – thanks both to more knowledgable surgery and better chemical control of organ rejection – it was clear that it would be better to use living organs. Hence the push for the new kind of death, brain-death. Transplantation from heart-dead bodies was abandoned, but now, with the current shortage of organs, and with new infrastructures, heart-dead organs are being used again. Infrastructure is needed to harvest the organs as soon as possible after blood circulation stops. The family have to be persuaded that the harvesting should take place before a minute’s mourning has been allowed.

Because my knowledge of organ transplants is only book-learning, as it is for the vast majority of outsiders, I thought of organs as spare parts. The closest I have come to the spare part system was when I was supposed to be unconscious during an operation to insert a plastic lens in my eye. My surgeon was doing a marvellous job on me while simultaneously negotiating corneas on his speaker-phone. The surgeon and the local cornea administrator could have been buyer and seller haggling over carpets in a market. The surgeon wanted the best corneas for a late middle-aged patient, while the administrator thought the only pair of perfect young corneas he had in his possession should be reserved for a younger person in the care of a less influential surgeon. This tiny experience (confirmed later by the surgeon, and so not a drug-induced fantasy) made me think of organs as spare parts, some of higher quality than others. I gave no thought to what the donors’ families, or the recipients, might feel. I have learned a great deal from Lesley Sharp’s long-term study of the insiders, and, to put it crudely, their insides.

In November, when I was reading this book, I came across a letter in the Toronto Star written in response to a bland editorial against presumed consent for organ donation. Presumed consent is the norm on the continent of Europe: unless you have explicitly forbidden the harvest of your organs, you are presumed to have allowed it. But in the individualistic Anglo world – the UK, the US, Canada, Australia – family members must be involved in the consent process, even if the individual had formally consented when alive, which most people have not. The letter was from an anguished mother who had watched her four-year-old die, and who, with her husband, had authorised the reuse of any viable body part. She ended her letter angrily:

I resist anyway the idea that we are all a collection of usable parts, and that someone unknown to us can decide how to take us apart and redistribute us. It’s a mechanistic rather than a humanistic view . . . It is not like putting a new element in an old stove.

Sharp has a lot to say about this sensibility. Strange Harvest is almost entirely American in scope: every ethnographer of old had her own territory, and Sharp’s is the United States. America is in any case of interest to the rest of the world, not only because more organs are transplanted there than in any other country, but because American mores are quite contagious. Moreover, the dominance of money-driven medicine ensures that more innovative and expensive techniques are pioneered there than elsewhere. Sharp assures us that although the sale of body parts is forbidden, organ transplantation is just about the most lucrative branch of medicine in the US, for the surgeons, their staff and the hospitals themselves.

A footnote is called for here, because, in another sense, Spain is the transplant centre of the world. It now has far more donors per citizen than any other country: about 34 per million as compared to 12 in the UK, and 22 in the US. For a while, Spain had more organs than it could use, while waiting times stretched over all too many years in the rest of the world. It is often said that presumed consent explains the difference – whenever the shortage of organs is publicly debated in the English-speaking world, switching from informed consent to presumed consent is the solution that tends to be favoured. But that is a completely mistaken view. First, the United States is at least as strict about informed consent as the UK, but has almost twice as many donors per head. Second, Greece has presumed consent and only half as many donors per head as the UK. Third, in Spain, presumed consent is the rule, not the practice. Families are almost always consulted in Spain and other European countries. Presumed consent is not, then, the base of Spanish success. What is?

The reasons are many, but the key is infrastructure. It’s true that there is far more social acceptance of the procedure in Spain than in other countries, thanks partly to propaganda appeals to national pride, and not just to altruism. There is also the more than tacit support of the Catholic Church. But what really matters is the efficient organ procurement system at the local level, with every significant hospital in the country directly involved. The system is integrated across every region, and local organ procurement organisations are rewarded on a per organ basis – no other country has dared to emulate that. Spain continues to innovate, and was the first to resume using organs from ‘non-heart-beating’ donors. (Like ‘donor’, ‘recipient’ and ‘procurement’, that is a standard label.) It’s a practice that depends on public acceptance, a lot of organisation and fine judgment, because you need to get the surgeons there just as the patient’s heart is about to stop – a grisly aspect of the necessary infrastructure. Procurement officers are a fact of life in Spain. How many people have ever heard of an organ procurement organisation, which Sharp abbreviates in her book as an OPO? The great Spanish film-maker Pedro Almodóvar has directed the only major movie with organ donation as a central theme, and with a procurement officer at the heart of the plot: All about My Mother (1999). The Flower of My Secret (1995) opens with two rather inept procurers practising, in front of a coach and camcorder, how to talk to the mother of a boy just killed in a motorcycle accident.

We get the sensational stories in the media. The first partial face graft and the corresponding problems about the way it affects the identity of the patient. Or November’s simultaneous serial kidney transplant epic at Johns Hopkins. That’s five people, V, W, X, Y, Z, who are locked into dialysis and very ill. Serial donation? Perhaps one should say cyclic. V comes with friend or family member v who is willing to donate a kidney. She is not compatible with V, but is compatible with W, whose friend w’s kidney won’t fit W but goes to X, whose friend x’s kidney . . . In this case Z had no friend z compatible with V to complete the cycle, but an ‘altruistic’ donor stepped in to provide V’s new kidney. The human interest here is that Mrs Altruist had recently experienced two disasters: a husband dead from a brain haemorrhage and a daughter dead from an overdose. Mrs A may have taken the altruism route to restore some sense and meaning to her life. That is a story fit for Sharp’s book, even if she does not do living donors.

Sensational tales notwithstanding, the day-to-day work of organ procurement is mundane and unrelenting. Somebody is on hand in properly equipped hospitals to monitor those who are near death, to meet with their kin, to talk softly but effectively about donation. And to catch the quick deaths in the emergency ward. The motorcycle is the procurement officer’s best friend, for young men ride dangerously and enter Emergency half-dead with mangled heads, but hearts and lungs in perfect shape. US procurement officers have the rich additional resource of deaths from gunshot wounds. Procurement is not Sharp’s target, however. She presents the procurers as essential but rather faceless, chatting up distraught relatives with soothing clichés about the gift of life, but having no contact with the cadavers after they have been donated.

How dead is brain-dead? Few of us think about the flesh and blood on the ventilator, the chest going up and down in regular breaths, the heart pumping the blood around and keeping many of the organs working and thus reusable. What seems to have disturbed Sharp most was the fact that brain-dead donors are anaesthetised before the organs are extracted. Brain-dead, and hence incapable of feeling pain: why do they need anaesthesia? There appears to be a serious amount of denial here. When Sharp first started asking that question, three organ procurement staff, two neurologists and two internists told her that she was misinformed; another physician told her to ask an anaesthetist, since he did not want to talk about it.

When she did get answers, they were various. Anaesthetists can monitor and control blood pressure by the use of various drugs; these can relax muscles so that operating is easier, and also help to prevent the abdomen collapsing at a critical moment. So the anaesthetist’s drugs make the cadaver more tractable. But, Sharp reveals, there is a lot more going on. A brain-dead body will move in a lifelike way when nerves are pinched or cut. The body, warm and looking healthy enough where it has not been injured, may seem to shrug or kick or even signal. This is very disturbing to some of the staff attending the operation. These effects are reduced almost to nothing when the cadaver is anaesthetised. And some of the people involved reflect, perhaps, that if, despite all the tests, the person is not quite dead, then at least he will be spared pain in the moments before the heart stops. All this despite the official conviction that brain-death implies no possibility of feeling pain – ‘pain is a cortical phenomenon.’

Sharp turns to the UK, which is apparently the only place where the anaesthetising of cadavers has been debated in public by experts. A letter from an anaesthetist to the Journal of the Royal Society of Medicine in 1999 pulls no punches. ‘The greatest misconception is that the donor will be dead in any ordinary sense of the word. Most people equate death with [the heart having stopped], not the warm, pink, pulsating, breathing (albeit by machine), reactive state that we call brainstem death.’ The debate continued through the following year in Anaesthesia, where there were heated remarks about ‘the transplant lobby’.

There is evidently a lot of disquiet, even if everyone – and certainly Sharp herself – agrees that organ transplantation is an invaluable way to grant life. And it is life of quality, for many who would otherwise die having lived lives of no quality in the time remaining to them. For the patients who can carry on, bound to a dialysis machine, say, a kidney transplant is immensely cost effective (at present almost 2 per cent of the NHS budget goes on dialysis for about 0.05 per cent of the British population).

I had always thought of brain-death as being unequivocal, for I am one of those who locates the soul in the loving (or hating) conscious being. I had accepted the metaphor of a person first passing into a vegetative state – although on the ventilator the human is nearer to being a machine than a vegetable. I had never thought of what it might be like to see the tranquil body of someone close to me ‘breathing’, yet declared dead. I expect Sharp will get some nasty knocks from those who fear that she is undermining the official dogma, that brain-death is death, and nothing more.

It is not just dogma but rhetoric. Sharp has been to many transplant conferences. At some point recipients will stand up and testify to the life they have gained. The declarations are ritualised, recalling a revival meeting, or, more directly, a meeting of Alcoholics Anonymous. Sharp points to the differences. The alcoholic is an addict, while the recipient never thinks of himself that way, even though (Sharp wryly observes) he has to stay on a cocktail of powerful medication for the rest of his life. The alcoholic has only his own sins to thank for his former misery, while the recipient is not responsible for his ailing heart. But both, for totally different reasons, are survivors: once an alcoholic, always so, once a recipient, always so. In both cases there is an evangelical-style gratitude for being a survivor. There is no surprise in this. Twelve-step programmes and their descendants are part of the American way of life.

There is much more to the rhetoric than that. Sharp writes of the ‘greening’ of organ transplantation. The symbols, the logos, are trees growing, butterflies transforming. The grafting of esteemed apple varieties onto the rootstock of strong apple trees with poorer fruit is played up. Groves are planted with saplings in memory of donors, saplings that shall turn into mighty oaks. All is ecological, and therefore, it is suggested, all is natural. And you, the family of the donor, are giving the gift of life. Donors’ kin and lovers get to feel good, and the recipient gets to live.

That isn’t the end of it. ‘Those who donate are usually young, healthy people who have died suddenly and unexpectedly,’ the mother of the four-year-old donor wrote in her letter to the Toronto Star. ‘The tragedy of their deaths gets overlooked in the way the debate is framed by those . . . who seem to think we are all mechanical collections of interchangeable body parts.’ She continues by saying, ‘we had two days to get used to the idea that he was dying, and to trust the hospital staff who told us so. [And to be sure that] the time of death is not being advanced because other people are waiting for the usable parts.’

Ideal donors are indeed young and healthy, victims usually of a cruel accident, or sometimes of an atypical disease. So the family has to cope with the meaningless. Procurement officers work on this, trying to build up the sense that the death will acquire meaning, if the organs enable others to live. But if it has meaning, would it not be even more meaningful to know the recipient? Or recipients? As many as ten people can benefit from one donor. The little four-year-old provided heart valves and corneas to several different individuals, while a motorcycle donor can provide heart, lungs and all the rest of his organs plus tissue transplants. And in addition to the cyclical transplants among living donors and recipients I mentioned earlier, there are what Sharp calls dominoes. A man has a healthy heart but diseased lungs; he receives a total heart and lung transplant, while his own heart is transplanted into someone else.

In the beginning, the policy governing organ donation was modelled on adoption policy. In the past, parents who adopted were never told about the birth mother, for fear that the child would later try to find her. Likewise, a recipient and the donor’s family were never told about each other for fear of contact. But recipients feel that something new has come into them, and donor kin, having participated in saving a life, want to know the bearer of part of the person they love. This is especially true of the heart and lungs, the symbols of the soul. In the US the rule forbidding donor-recipient contact is breaking down. More and more recipients are finding out who the donor was. Some just scan the obituaries for the day before their own rebirth and make a good guess. And the donors are out looking for recipients, breaking down institutional barriers. Today in the US there are Transplant Games analogous to the Wheelchair Games, the Gay Games, the Olympic Games. The first were held in Los Angeles, with competitions in innumerable categories designed so that most recipients could compete. Donor families were invited, but kept strictly separate from recipients. All that has changed: there is now open mingling and searching.

All this makes new kinship relations possible. Again, the comparison with adoption is strong. In the new world where adoptees can look for and find their birth parents, kinship is simply a matter of being discovered. But in the world of organ transplants, technology has created new kin. Many recipients feel a strong relationship with the family of their donor. The bond is especially strong with the mother. Strange family relations are created when Mr B, a man of 60, gets the heart of motorcyclist C, a youth of 17, whose mother, Mrs D, is 40. Mr B comes to regard Mrs D as a new mother who has participated in his rebirth. She calls him son, even if she is 20 years younger than he is. Mr B also feels that he bears some of the soul of young C, not just his energy but also some of C’s quirks and fascinations. Sharp evidently feels that this may not be the best way to resolve the emotional complications of transplants. Fifteen years ago, the anthropologist Paul Rabinow introduced the concept of ‘biosociality’ to describe the bonds of community grounded in new biotechnologies. Sharp suggests we may be witnessing something more like biosentimentality. At any rate it is a field day for ethnographers, even down to the ghost stories – recipients claim to have been visited by the donor whose organ they carry.

Thanks to its own success, organ transfer is in crisis: there are not enough donors. In the UK, four hundred people are said to die each year for lack of organs; many more wait endlessly, in states ranging from ill-health to agony. Hence the dubious trade in which a rich person goes to poor countries to buy a kidney from a very poor man whose aftercare is horrendous and whose life after donation will be one of illness. Hence the use of body parts from executed criminals. These are both facts of contemporary life. The first is shameful; the second case is more complicated. I am totally opposed to the execution of human beings, but I can’t see the harm in reusing their body parts. Then there are the horror stories of unwanted prisoners deliberately executed for organ harvesting. Is that a globalisation myth? There is fair but not conclusive evidence that such things do happen, although not often. At any rate, with our ageing populations, we will want more and more donors, and even if we surpass Spanish standards of integrated excellence they will not be enough.

How do we get more organs? First, by relaxing standards. Donors deemed to be at risk for such transmissible diseases as hepatitis used to be excluded. No donor over 70 was considered. Today, in the US, if the recipient is willing to accept the risk, such donors are accepted; better risk being sick than dead. Second, by allowing donations from non-heart-beating donors – a practice now spreading from Spain to other countries. Third, through the use of new technologies. Research is currently being conducted into the use of electromechanical organs, and organs from other species.

These new technologies are the subject of Sharp’s closing analysis. Should we aim at making cyborgs: humans with, say, implanted electromechanical pumps called artificial hearts? Or should we focus on hybrids: humans with, say, hearts transplanted from pigs? Pigs are considered more promising as donors than simians: proximity on the evolutionary tree is less important than structural and functional parallels, so long as the rejection problems can be solved. Engineering design comes first; biochemistry resolves the side effects. Sharp reports that, for this reason, expert opinion is quite strongly in favour of hybrids over cyborgs. Better to use an organ where most of the design problems have been worked out in the course of mammalian evolution, than to play God or Darwin and try to do it ourselves by imitating the real thing.

Lay Americans feel differently. They are confused by the very thought of transplanted animal parts, and fear that they will become animal themselves. Many are more offended at the thought of a pig’s heart than a chimpanzee’s, pigs being considered unclean, if not filthy. Most prefer the thought of a machine implant: clean, cool, completely reliable – the customary wish of the lay American for the technological fix. African-Americans are apparently more opposed to animal parts than Euro-Americans, but they aren’t too happy about becoming cyborgs either. Artificial hips, knees and even ankles are now commonplace among middle-class middle-aged active Americans. Pacemakers are routine. Cochlear implants for the hearing impaired really help, even if their use is contested by the deaf community. But when we get to hearts, people become concerned.

I do not know to what extent Sharp’s discovery that people don’t want to be hybrids is skewed by her American sample. A majority of Americans rejects evolutionary theory in all its forms and guises; other mammals, therefore, are regarded as totally other. It is possible that a sample of Canadians – a population that is largely indifferent to the evolution controversy – would have somewhat different views. Perhaps not: Sharp notes that at least among the students she used as subjects, attitudes to hybrids did not correlate with degrees of commitment to fundamentalist Protestant doctrine. She may be tapping into a deeper human concern, about the heart as the centre of our emotions and the eye as the soul’s window on the world.

Strange Harvest does not consider the stem cell option, perhaps because it is taboo in many quarters in the US. Many scientists elsewhere, including the UK and Canada, will find Sharp’s alternatives too limited. They are dubious about cyborgs and hybrids, for technical reasons, and hold out greater hope for the use of stem cells to generate and regenerate organs. But the whole field has been transformed since Christiaan Barnard’s first heart transplant, and we should recognise that we have no clear idea about what will happen next.

These are fundamental issues, touching on the way in which different peoples conceive their relationship to nature, to people, to machines and to God. One may argue that attitudes to questions arising from the new technology of organ transplantation will clarify such differences. But maybe we should just say that we haven’t yet negotiated our relationship to the new biotechnology. We need the keen eye of the ethnographer to point out that transplant technology, whose practitioners think of themselves as relying on proven knowledge, experimental hypothesis and mastery of techniques, is in fact embedded in its own ideology. Transplantation, Sharp writes, ‘rests on a paradoxical set of ideological or moral premises that guide medical conduct, professional outreach efforts, and dominant lay understandings of death, the body and gift giving’. She lists seven premises taken for granted in the transplant world, from master surgeon to donor’s weeping sister or brother. True, they are taken for granted, but there is a tension between them that produces what she calls paradoxes: transplant engineering is a medical miracle; body parts must never be commodified; reusable organs are precious; brain-death criteria are needed to generate transplantable parts; the scarcity of available human organs needs radical solutions; merging different human bodies is a natural progression as we learn how to do it better and better; even as organ transplantation becomes an industry requiring corporate management, dying patients still require absolute compassion and trust. There are many things in Sharp’s book to make you feel uneasy, but if you ask of yourself the questions she asks of the communities she has studied, you may find out a good deal about yourself that you did not know before.