QUALITATIVE

Lock / HUMANHEALTH
BODY PARTS
RESEARCH / December 2002

Keynote Address: Eighth Qualitative

Health Research Conference

Human Body Parts as Therapeutic

Tools: Contradictory Discourses and
Transformed Subjectivities

Margaret Lock

O ver the past half-century, the development and refinement of the technology
of tissue and organ transplantation has enabled us to make routine use of
human bodies as therapeutic tools. Appropriation of human cadavers and body
parts for medical purposes has a long history that commenced in classical Greece.
This history is not a savory one—very often, vivisection of criminals or
marginalized people was involved. As late as the mid-19th century, in both Europe
and North America, bodies obtained for medical dissection were frequently pro-
cured through foul means, and a disproportionate number were bodies of the poor
or of minority peoples (Richardson, 1988).
It was not until the first part of the 20th century that medical knowledge
advanced sufficiently that blood could be transfused, and then, later, solid organs
were transplanted, bringing about a confusion of body boundaries and mingling of
body parts never before possible. Some rather crude experimentation with organ
transplants in the early years revealed that body parts cannot be grafted at random
and biological rules of blood and tissue typing must be adhered to faithfully. Solid
organs, more often than not, are never fully accepted by recipient bodies, so that life-
long use of immunosuppressants is necessary. Despite this difficulty, organ trans-
plants have been routinized with apparent ease and become part of the health care
systems of virtually all countries in the world able to support the necessary technol-
ogy. This suggests that the majority of health care professionals and policy makers
assume that making use of organs obtained from willing donors, whether living or
dead at the time of procurement, is a rational, worthwhile, and relatively
unproblematic endeavor.
After nearly 12 years of research on this subject, my position is very supportive
of organ transplants, aside from those occasions when excessive zeal on the part of

AUTHOR’S NOTE: This article is a revision of a keynote address delivered at the Eighth Annual Interna-
tional Qualitative Health Research Conference, Banff, Alberta, Canada, April 4-6, 2002.
QUALITATIVE HEALTH RESEARCH, Vol. 12 No. 10, December 2002 1406-1418
DOI: 10.1177/1049732302238751
© 2002 Sage Publications

1406

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 Lock / HUMAN BODY PARTS 1407

health care professionals is evident. Transplants can and do effectively ease suffer-
ing and successfully extend the lives of very many people. However, the donation
of organs is not as straightforward as some experts would have us believe. The use
of ethnographic research is indispensable in teasing out the ambiguities and doubts
that persist in connection with both the giving and receiving of organs. An appraisal
of the lived experience of individuals who are directly involved with the transplant
world, whether as patients or as caregivers, makes it abundantly clear that furnish-
ing data about numbers of organs donated, numbers of transplants carried out, and
survival rates 2 years after transplant is simply not an adequate basis on which to
judge the successes and shortcomings of this technology. The transplant enterprise
is an enormously complex process involving much more than rational calculation
and the efficient use of donated body parts.
In this article, I first want to examine an oft-repeated claim made in professional
medical literature and in the media, namely, that there is a “growing shortage” of
organs for transplant. The assumption behind this claim is that donation rates have
tended to fall off and so the public should be more willing to donate organs. How-
ever, a closer examination of the situation reveals that blunt assertions about a
growing shortage of organs mask the complexity of the circumstances.
There is no doubt that waiting lists for organs, especially kidneys, are long and
growing. However, there are several obvious reasons for this state of affairs. First,
there are fewer car accidents than was the case 20 years ago due to better automobile
safety devices. Second, trauma units are more effective than previously in prevent-
ing patients with traumatized brains from becoming brain-dead. Third, as is well
known, populations in technologically advanced societies are aging rapidly. These
changes mean that the potential donor pool has decreased considerably over the
past two decades.
On the other side of the equation, the demand for organs has increased, in large
part because the population is aging. However, the increasing numbers of end-stage
kidney and liver disease so evident today is not due solely to aging but is in large
part the result of complications associated with increasing rates of diabetes and
hepatitis C among younger people. These are diseases that are intimately associated
with poverty, alienation, and social inequality and are first and foremost public
health problems. Finding sufficient organs to deal with a burgeoning problem of
this magnitude is neither appropriate nor feasible, and a much greater investment
in improved social environments is called for.
A further factor that contributes greatly to the impression that there is an
increasing shortage of organs is that the numbers of patients deemed eligible to
become transplant recipients has increased exponentially over the past decades.
This situation is a direct consequence of decisions made by committees constituted
by the transplant world and, increasingly, of public expectations. The result is that
making transplants available for tiny infants, for individuals over 80, and for
patients with comorbidities is now taken for granted. Furthermore, second or third
transplants are routinely carried out when earlier ones fail. In other words, the
transplant world has broadened its sights and has itself created an increased “need”
for organs at a time when there are many fewer potential donors.
Given the assumption of a shortage, the ways in which cadaver donation can be
increased are frequently discussed, and the spotlight is usually turned onto families
and how they might be induced to cooperate more willingly with the donation of

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1408 QUALITATIVE HEALTH RESEARCH / December 2002

the organs of their relatives diagnosed as brain-dead. In North America, it is esti-

mated that fewer than 50% of potential organ procurements from brain-dead
patients whose donor cards are signed are actually accomplished because families
choose not to cooperate and do not give their consent (Siminoff & Chillag, 1999).
Legally, consent of the family is not required if a donor card is signed by the patient,
but in no medical settings are health care professionals prepared to wheel out brain-
dead patients for organ procurement when families object.
Although a good number of families select not to cooperate with donation of
the organs of their relatives, it is singularly inappropriate to place the blame for an
apparent shortage of organs entirely with them. Numerous surveys have been car-
ried out, particularly in the United States, to find out why people do not donate
organs. The conclusions drawn from these surveys have been very similar—that
certain minority groups do not donate as often as they might—notably African
Americans and Hispanics (Prottas, 1994). All too often, no mention is made in these
surveys of the fact that these particular groups of people and certain other minority
groups receive proportionally fewer organs than might be anticipated and that, in
all probability, this is a result of deficiencies or biases in regionally organized alloca-
tion systems. On the positive side, programs designed to educate potential donors
among minority groups about what is entailed in organ donation have met with
considerable success, indicating that the perceived deficit in donation by such
groups cannot simply be put down to a lack of generosity or of altruism, as more
than one study has concluded (Alexander & Ashwini, 1998).
The findings from surveys have led researchers to conclude that part of the
problem also lies with ICU personnel, who are reluctant to approach grieving fami-
lies or else do it ineptly (Prottas, 1994). To counter this situation, a policy of required
request has been put in place in many American states. In addition, the question of
financial incentives has repeatedly been raised over the years as a means of increas-
ing donations. The possibility that involved hospitals or transplant organizations
make a contribution to funeral expenses is currently under discussion by the Ameri-
can Medical Association. However, some people believe that such payments might
serve only to decrease donation rates, as families who wish to give altruistically
might be offended by such a system. It has been suggested by involved health care
professionals that an experiment could be carried out, probably in the state of Penn-
sylvania, to ascertain if indeed payment of funeral expenses would increase or
decrease donation rates. In the summer of 2002, this experiment was initiated.
Running through all such debates and underlying the design of the survey
research carried out to date are three assumptions. First, organs go to waste if not
donated, and every citizen should be willing to contribute to the utilitarian use of
organs in the transplant enterprise. Second, and associated with the first assump-
tion, is the idea that organs are simply mechanical entities whose worth is entirely
without symbolic or affective meaning. A further assumption is that the diagnosis
of brain death is straightforward and that the condition of brain death uncondition-
ally indicates that death has occurred. Moreover, families should be willing to inter-
rupt the grieving process for up to 24 hours while organs are procured. In the
remainder of this article, I call these three assumptions into question.

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 Lock / HUMAN BODY PARTS 1409

THE WORTH OF HUMAN ORGANS

Before the removal of organs from donors and their preparation for use as therapeu-
tic tools can come about, the necessary technology must be in place and, further-
more, human organs have to be understood as fungible. Moreover, donors must be
designated as dead prior to organ removal. I point out what seems obvious today as
a reminder that it is only over the past 40 years that we have gradually come to
accept organ procurement as commonplace; during this time, for the most part, a
utilitarian drive to maximize available organs has dominated any deeper examina-
tion of the issues involved.
In addition to assuring that death has indeed taken place, a tacit agreement
must also exist that the body will not be violated through organ removal, and, to this
end, conceptualization of organs by the medical profession as mere objects is
enabling. However, organs for transplant are, by definition, alive; although
objectified, they cannot be reduced to mere things, even in the minds of involved
physicians, and they retain, therefore, a hybrid-like status.
Mixed metaphors associated with human organs encourage confusion about
their worth. The language of medicine insists that human body parts are material
entities, devoid entirely of identity whether located in donors or in recipients. How-
ever, to promote donation, organs are animated with a life force that, it is argued,
can be gifted, and donor families are not discouraged from understanding donation
as permitting their relatives to “live on” in the bodies of recipients (Sharp, 1995).
Organ donation is very often understood as creating meaning out of a senseless,
accidental death through the use of a technologically mediated path to transcen-
dence, although the enforced anonymity of donor families ensures that no earthly
ties of solidarity between recipients and donor families are formed except on rare
occasions (Lock, 2002).
Despite the enforced cloak of anonymity associated with donors, it has been
shown on many occasions that large numbers of recipients experience a frustrated
sense of obligation about the need to repay the family of the donor for the extraordi-
nary act of benevolence that has brought them back from the brink of death (Fox &
Swazey, 1978, 1992; Sharp, 1995; Simmons, Marine, & Simmons, 1987). The “tyranny
of the gift” has been well documented in the transplant world (Fox & Swazey, 1978,
p. 1168), but it is not merely a desire to try to settle accounts that is at work when peo-
ple want to know more about the donor. It is abundantly clear that donated organs
very often represent much more than mere biological body parts; the life with which
they are animated is experienced by recipients as personified, an agency that mani-
fests itself in some surprising ways and profoundly influences subjectivity.
A conversation I had a few years ago with a heart transplant surgeon was most
revealing in this respect. This surgeon was responding to stories that have been cir-
culating for some time now about a debate taking place in several of the American
states as to whether prisoners on death row should have the option of donating their
organs for transplant before they are put to death. The argument is that prisoners
should be given the choice of making a “gift” to society just before their lives are
extinguished. Perhaps those among the prisoners who are believers will even go
straight to heaven.

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1410 QUALITATIVE HEALTH RESEARCH / December 2002

This surgeon was uncomfortable about the idea of organ donations made by
Death Row prisoners, not so much because he was concerned about the highly
questionable ethics (Can one make an “informed choice” in such circumstances?)
but about receiving a heart that had been taken out of the body of a murderer. He
said to me, with some embarrassment, “I wouldn’t like to have a murderer’s heart
put into my body,” then added hastily, trying to make a joke out of the situation, “I
might find myself starting to change” (Lock, 2002, p. 320).
A good number of organ recipients worry about the gender, ethnicity, skin
color, personality, and social status of their donors, and many believe that their
mode of being-in-the-world is radically changed after a transplant, thanks to the
power and vitality diffusing from the organ they have received. This situation leads
to contradictions and confusion, even among health care professionals, it seems.
Organ donation is promoted making use of the metaphor of “the gift of life,” so that
organs are indirectly attributed with a transcendent life force by many people
involved with the transplant world. Once transplanted, however, if the recipient
attributes the “life-saving” organ with animistic qualities for more than a few
weeks, then he or she is severely reprimanded, even thought of as exhibiting pathol-
ogy (Sharp, 1995).
Interviews that I carried out in 1996 with 30 transplant recipients living in
Montréal reveal that just under half are very matter-of-fact about the organs they
have received (2002).1 These people insist that after an interim period of a few
months, they ceased to be concerned about the source of the new organ encased in
their bodies and resumed their lives as best they could, unchanged in any profound
way except for a daily regime of massive doses of medication. The responses of the
remaining recipients were different: They produced emotionally charged accounts
about their donors (about whom, in reality, they knew very little), the particular
organ they had received, and often about their transformed subjectivity.
Forty-one-year-old Stefan Rivet falls into the first group. He is a kidney recipi-
ent, doing well when interviewed 5 years after the transplant. He says,

Rivet: I heard about the donor, even though I wasn’t supposed to. It was a woman
between 20 and 25. She was in a car accident. You know, don’t you, that you can’t meet
the family because the doctors think it would be too emotional? But I wrote a letter to
them, it must have been a terrible time for them, and I wanted to thank them.
Lock: Did you find it hard to write that letter?
Rivet: No, no, it wasn’t hard for me. Like saying “thank you” to someone if they do some-
thing for you, that’s just the way it was.
Lock: Did you feel at all strange because it was a woman’s kidney?
Rivet: No. At first you wonder how could a female kidney work in a man. You think
about it. But once the doctor tells you that it works exactly the same in men and
women you don’t question things any more. It doesn’t bug me. I have my kidney, and
I can live, that’s all you really worry about.
When I first woke up in hospital I was worried. Of course, I didn’t know whose kid-
ney it was then, all you know is that there’s a strange organ in there and you hope that
it works; you don’t want anything to go wrong. After a while though, you adapt and
you stop thinking about it, except that it’s really important to take the pills. I just say
now that it’s my second life.

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 Lock / HUMAN BODY PARTS 1411

In contrast to recipients such as Stefan Rivet, many others undergo a rather dra-
matic transformative experience (see also Sharp, 1995). One such was Katherine
White, who first received a kidney transplant in 1982, and then, in 1994, after that
kidney failed and her own liver was also in jeopardy, she received a double trans-
plant of liver and kidney. Six months after the second surgery, she had this to say:

White: I have no idea who the donor was, all I know is that both the kidney and liver came
from one person because you can’t survive if they put organs from two different peo-
ple into you at once—your body would never be able to deal with it. I wrote a thank-
you note right away that I gave to the nurse. But they don’t like you to know who it is;
sometimes people feel that their child has been reborn in you and they want to make
close contact. That could lead to problems. I still think of it as a different person inside
me—yes I do, still. It’s not all of me, and it’s not all this person either. Actually, I might
like some contact with the donor family. . . . You know, I never liked cheese and stuff
like that, and some people think I’m joking, but all of a sudden I couldn’t stop eating
Kraft slices—that was after the first kidney. This time around, the first thing I did was
to eat chocolate. I have a craving for chocolate and now I eat some every day. It’s driv-
ing me crazy because I’m not a chocolate fanatic. So maybe this person who gave me
the liver was a chocoholic?! It’s funny like that, and some of the doctors say it’s the
drugs that do things to you. I’m certainly moody these days. You do change whether
you like it or not. I can’t say that I’m the same person I was, but in a way I think that
I’m a better person.
You know, sometimes I feel as if I’m pregnant, as if I’m giving birth to somebody. I
don’t know what it is really, but there’s another life inside of me, and I’m actually stor-
ing this life, and it makes me feel fantastic. It’s weird, I constantly think of that other
person, the donor . . . but I know a lot of people who receive organs don’t think about
the donors at all.
A while ago I saw a TV program about Russia and it seemed as though they were
actually killing children in orphanages to take out their eyes and other organs. This
disturbed me no end. I hope to God it’s not really like that. My parents and my uncles
all thought I shouldn’t have a transplant, they said you can’t be sure that the patient is
really dead. Brain-dead is not death, they said. But I know that’s not right. I had a
friend a few years back who had a bad fall off a bicycle and her husband donated her
organs. Once you’re brain-dead that’s it.
Lock: What do you think happens when people die?
White: I hope I go to heaven! I don’t believe in resurrection but I do believe in a heaven
and hell and an in-between, you know? I think there’s a person up there who knows
that I’m carrying a part of her around with me. I always think there’s somebody
watching me . . . but you know, I don’t really believe in religion . . . I really don’t. In a
way I wish I could have a pig’s liver or kidney—it would be much simpler then.

Despite the power of medical discourse working against animation of organs

by patients and the flat rejection of the possibility of any transformation in subjec-
tivity on the part of virtually all doctors, it is clear from numerous interviews carried
out independently by Leslie Sharp (1995) and me that a large number of patients in
Canada and the United States believe themselves to be “reborn” after a transplant.
These patients frequently form affiliations with other transplant recipients, but this
newfound group identity is often accompanied by a more substantial transforma-
tion; many recipients undergo a profound change in subjectivity and report that
they experience embodiment in a radically different way after a transplant.

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1412 QUALITATIVE HEALTH RESEARCH / December 2002

THE GLOBALIZATION OF SUBJECTIVITY

Not all technologically advanced countries have responded in the same way to
transplant technology. By far the majority of organs for transplant are procured
from brain-dead bodies. In Japan, a vigorous national debate has taken place for
over 30 years in which opponents to the recognition of brain death as the end of
human life have effectively blocked almost all organ transplants. Only in 1997 was it
finally agreed that the bodies of brain-dead patients could be commodified for use
in transplants. Since that time, however, there have been only 17 organ procure-
ments from brain-dead bodies (Lock, 2002). This situation has meant that for those
relatively few patients in Japan who receive transplants, “living related organ dona-
tions” is the norm, that is, organs are usually procured from living relatives. One
exception was Naka Yoshitomo, 63, a retired school principal who was the recipient
a kidney taken from a 70-year-old American brain-dead donor. The transplant took
place between 60 and 70 hours after the kidney was first procured in the United
States, having traveled halfway across the world and then languished in a cooler
while medical professionals disputed whether it should be used. Exactly one year
later, in 1996, when I interviewed him, Naka was experiencing a mild rejection of the
kidney, but since that time he has done exceptionally well.
“I’ve become ten years younger since I had the transplant,” he says, “I was on
dialysis for 13 years, every Tuesday, Thursday, and Saturday afternoons and
evenings.”
“How did you feel about having a kidney from such an old donor?”
“My wife was opposed, partly because of the cost. But my son agreed as soon as
he understood that I was keen.” (Note that Mr. Naka thinks first about the reactions
of his family and not about his own feelings.) He goes on,

I felt really lucky to go right to the top of the list of waiting people just because I hap-
pened to be the best match. I didn’t want to lose this chance—this seemed really to
be a “gift of love and health” (ai to kenkô no okurimono), finally, after all the waiting.

In the event, once the operation was completed, it took only 5 days before the kidney
started to function well. In the United States, this kidney would have been thrown
out as defective because of its age and the protracted time outside a human body.
One morning shortly after the operation, Naka was completely taken aback
when he noticed in the street below the sounds of one of the oppressively noisy
military-like vehicles used by the extreme right wing in Japan to stir up nationalistic
sentiment. As it crawled back and forth outside the hospital, he gradually became
aware of the message being screamed into the loudspeakers: “Bad doctors have
taken part in a cover-up. Importation of defective kidneys.” On and on they droned,
strident and abusive. Lying in his hospital bed, shocked, Naka was plagued by seri-
ous doubts and began to believe that in his haste to get a transplant, he had done
something wrong. He had been told that the chances of success for the transplant
were about 80%, but he started to wonder who he should believe. Time has proved
the judgment of the doctors correct—but they do indeed take risks in transplanting
aged kidneys into desperate Japanese patients.
Naka and others of his compatriots who have received transplants, as well as
transplant surgeons, have been labeled unpatriotic by a few of their bellicose

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 Lock / HUMAN BODY PARTS 1413

countrymen who have strong nationalistic sentiments. Both the recognition of brain
death as the end of human life and the carrying out of organ transplants making use
of brain-dead donors, whether the donor is Japanese or foreign, have caused hostile
reactions from the extreme Right as “unnatural” acts in which Japan should not par-
ticipate. After his first shock, Naka had no trouble ignoring the hostility targeted at
him and his surgeon. He reported to me that now he lives daily with thoughts about
his donor:

Naka: Hopefully I will understand how he felt one day. We must change our ideas in
Japan [and be more generous about donation], and that is why I wrote a book about
my experience.
Lock: Did you write a letter to the donor’s family?
Naka: Oh yes! I was happy to send that letter. I sent a copy of my book to UNOS (the
United States United Network of Organ Sharing) as well. Now I’m working hard on
cultural exchange between my hometown and our sister town in America. I go to
America all the time arranging visits and events. I can’t think of a better way to thank
that family for what they did for me.

Naka firmly believes that as a result of the transplant he is able to transcend the
boundaries of his former self and has become a citizen of a global community that
fosters international cooperation of all kinds.
Although Naka is highly cognizant of the generosity of his donor, this is by no
means always the case. Because of the anonymity that has been imposed on donors,
many of whom receive nothing more than a brief note of thanks from an organ pro-
curement agency, their altruism has gone virtually unmarked by many recipients
and even by some transplant teams. On the contrary, a sense of entitlement to “spare
parts” is evident among a good number of people involved with the transplant
enterprise.
Ethnographic research has contributed to a growing understanding that public
recognition of the indispensable part played by donors in the transplant enterprise
is crucial. With increasing frequency, donors’ families and organ recipients are
brought together, usually at public gatherings at which donors as a group are
memorialized. These encounters are not designed for the purpose of bringing
donor families together with the recipients of the organs of their relatives but rather
to create a community in which both donors and recipients participate. As a result of
such gatherings, family members who have already facilitated a donation may well
be motivated to encourage other people in their circle of acquaintances to comply
with organ donation should a relative of theirs become brain-dead.
To date, because donor families have been pushed into obscurity by a system
that requires anonymity, there has been little incentive for them to encourage other
people to do what they did; on the contrary, some families retain doubts that can lin-
ger for years as to whether they did the right thing in agreeing to donation. Only
when donor families are permitted to encounter firsthand the transformation that
transplants can have on the lives of so many people will such doubts be dissipated,
although even then they may continue for some people. Similarly, the misplaced
idea that a few people appear to have, that organ donation is simply a matter of sign-
ing an organ donation card, will be dispelled as donor families are increasingly
brought into the public domain. Signing a card is, indeed, rather easy, but it is, in the

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1414 QUALITATIVE HEALTH RESEARCH / December 2002

end, the families of donors who, in a state of intense shock, must agree to suppress
their own overwhelming feelings of loss and disbelief and permit the procurement
of organs.

THE AMBIGUITY OF LIVING CADAVERS

I want to turn now to another aspect of organ donation that is routinely overlooked:
attitudes toward the dead and dying. Surveys in Sweden, Japan, and the state of
Oregon about people’s attitudes toward newly dead bodies show what surely we
all should know intuitively, that many people, up to 50% surveyed, feel uncomfort-
able about the thought of desecration or tampering with the newly dead (Lock,
2002; Sanner, 1994). Many people, when questioned, report that they believe that the
suffering of brain-dead individuals will be aggravated through organ removal.
When it is recalled that virtually all brain-dead patients have undergone untimely
and premature deaths and that relatives are in an appalling state of shock, it is not
surprising that many families cannot agree in good conscience to donate.
By far the majority of human organs for transplant are procured from brain-
dead donors. For this to come about, recognition of a new form of death located in
the brain was made legal in North America and in many European countries just
over two decades ago. In Japan, in contrast, the recognition of brain death as the end
of human life has been the major bioethical problem in that country for over 30
years, involving extensive public debate. The condition of brain death was legally
recognized in Japan as human death only 5 years ago, and then under very specific,
circumscribed conditions. Brain-dead patients who do not wish to donate organs
retain the rights associated with other patients and are treated in Japan as though
living. The ventilator is not disconnected after the diagnosis is made and “treat-
ment” continues. Only those few people who have signed a card agreeing to
become donors, a card that the family must also sign ahead of time, can be counted
as dead. Once organs are procured from these individuals, the ventilator can then be
turned off legally.
Although essentially the same technologies, basic scientific knowledge, and
clinical expertise are available in North America and Japan, transition from an
embodied living patient to a living cadaver from which organs can be procured is
remarkably different in these two locations. In one, a brain-dead patient is unequiv-
ocally recognized as dead, whereas in the other, such a patient is alive but can be
counted as dead if advanced directives so indicate and the family so wishes.
There is unanimous agreement among physicians working in intensive care
units in Japan and North America that the clinical criteria for whole-brain death are
infallible—if the tests are performed correctly. It is also agreed that whole-brain
death, properly diagnosed, is an irreversible state from which no one has ever
recovered. At the same time, a unanimous sentiment exists that the organs and cells
of the body remain alive thanks to the artificial brain stem supplied by the ventila-
tor. Indeed, if organs are to be transplanted, then they must be kept alive and func-
tioning—as close to “normal” as is possible. Intensivists are aware that infants have
been delivered from brain-dead bodies. It is not possible to disregard the fact that
the brain-dead are warm and usually retain a good color and that digestion, metab-
olism, and excretion continue, and some intensivists know that the hair and nails
continue to grow. Furthermore, clusters of cells in the brain often remain active after

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 Lock / HUMAN BODY PARTS 1415

brain death has been declared, and endocrine and other types of physiological
activity continue for some time. For by far the majority of North American
intensivists, although biological death has clearly not occurred, a diagnosis of brain
death indicates that the patient has entered into a second, irreversible, state, in that
the “person” and/or “spirit” is no longer present in the body.
The body has assumed a hybrid status—that of a dead-person-in-a-living-body,
about which confusion is evident. However, rather than dwell on ambiguities or
engage in extended discussion over conceptual ideas about death, most clinical
practitioners are, not surprisingly, interested first and foremost in accuracy and cer-
tainty. To convey their position that an irreversible biological condition has set in, in
addition to explaining about tests and examinations to families, they emphasize
that the “person” is no longer present, even though the appearance of the entity
lying in front of them gives little visual support to this argument (Lock, 2002).
When interviewed, intensivists in North America stated that they say things to
families at the bedside such as “The things that make her her are not there any more”
or “He’s not going to recover. Death is inevitable.” One doctor, who, in common
with many of his colleagues, chooses not to say directly that the patient is dead,
because for him, personally, this is not the case, tells the family firmly that the
patient is “brain-dead” and that there is “absolutely no doubt but that things will get
worse.” Another physician pointed out that it is difficult to assess what is best to say
to the family, because in most cases one does not know whether they have religious
beliefs:

I believe that a “humanistic” death happens at the same time as brain death. If I did-
n’t believe this, then I couldn’t take care of these patients and permit them to become
organ donors. For me the child has gone to heaven or wherever, and I’m dealing
with an organism, respectfully, of course, but that child’s soul, or whatever you
want to call it, is no longer there. I don’t know, of course, whether the family believes
in souls or not, although sometimes I can make a good guess. So I simply have to say
that “Johnny” is no longer here.

One of the intensivists thinks of the brain-dead body as a vessel and tells the family
that what is left of their relative is only an empty container and that the “person has
gone.” For a doctor born in Latin America, the “essence” of the patient has gone, and
this is what he tells the family. All the intensivists except one agreed that the depar-
ture of the person is evident because of the diagnosis of an irreversible loss of brain
function, thus establishing a permanent lack of consciousness, no awareness, and
no sensation of pain. In other words, a sensate, suffering individual has ceased to
exist because his or her mind no longer functions. When mind is finished, so, too, is
subjectivity.
It is essential that the doctor take control “a bit,” argued one interviewee when
discussing brain death. Families, she insisted, often find it difficult to accept that
there is no chance of a reversal, and this is where the doctor cannot afford to appear
diffident or to equivocate. On the other hand, one intensivist said, “You can’t go
back to the family and say that their relative is brain-dead, you’ve got to say that
they are dead—you could be arrested for messing up on this.” He recalled that dur-
ing his training, he had described a patient as “basically dead” to his supervisor,
who had responded abruptly by insisting: “He’s dead. That’s what you mean, basi-
cally.” The task for intensivists, then, is to convince the family that, even though

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1416 QUALITATIVE HEALTH RESEARCH / December 2002

their relative appears to be sleeping, he or she is, in fact, no longer essentially alive;
what remains is an organism or vessel that has suffered a mortal blow.
It is clear that intensivists have few second thoughts about reversibility, but it is
also evident that many of them, nevertheless, harbor some doubts about the condi-
tion of a recently declared brain-dead patient, and it is often those with the longest
experience who exhibit the most misgivings. An intensivist with over 15 years of
experience said that he often lies in bed at night after sending a brain-dead body for
organ procurement and asks himself, “Was that patient really dead? It is irrevers-
ible—I know that, and the clinical tests are infallible. My rational mind is sure, but
some nagging, irrational doubt seeps in.” This doctor and the majority of other
intensivists interviewed take some consolation from their belief that to remain in a
severely vegetative state is much worse than to be dead. If a mistake has been made,
and a patient is diagnosed prematurely or treated as though brain-dead when this is
not the case, then it is assumed that either the patient would have become brain-
dead shortly thereafter or permanent unconsciousness would have been their lot.
But doubts continue to fester in some people.
An intensivist, who came to North America from India as an immigrant when a
child, stated that, for him, a brain-dead body is

an in-between thing. It’s neither a cadaver nor a person, but then again, there is still
somebody’s precious child in front of me. The child is legally brain-dead, has no
awareness or connection with the world around him, but he’s still a child, deserving
of respect. I’ve done my tests, but there’s still a child there.

When asked by families, as he often is, if the patient has any consciousness or feels
pain, this intensivist has no difficulty in reassuring them that their child is dead and
is no longer suffering. He noted that it is especially hard for relatives when they take
the hand of their child and, sometimes, the hand seems to respond and grasp back.
This reflex response was noted by several of the intensivists and nurses as very dis-
concerting, especially when one is trying to convince families that the patient is no
longer alive.
One doctor professed to a belief in a spirit or soul that takes leave of the body at
death. For her, if brain damage is involved, this happens when the patient’s brain is
irreversibly damaged, at the moment of trauma or shortly thereafter. Another
intensivist insisted at first, as did many of the individuals interviewed, that he had
no difficulty with the idea of brain death: “It seems pretty straightforward to me. Do
the tests, allow a certain amount of time; a flat EEG and you’re dead.” Then, 10 min-
utes later, he said, “I guess I equate the death of a person with the death of the spirit
because I don’t really know about anything else, like a hereafter. I’m not sure any-
way if a hereafter makes a difference or not.” When asked what he meant by the
word “spirit,” this intensivist replied,

I guess one would have to take it as meaning that part of a person which is different,
sort of not in the physical realm. Outside the physical realm. It’s not just the brain, or
the mind, but something more than that. I don’t really know. But anyway, a brain-
dead patient, someone’s loved one, won’t ever be the person they used to know.
Sure their nails can grow and their hair can grow, but that’s not the essence.

A senior doctor, struggling to express his feelings, imbued the physical body
with a will: “The body wants to die, you can sense that when it becomes difficult to

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 Lock / HUMAN BODY PARTS 1417

keep the blood pressure stable and so on.” This intensivist, although he accepts that
brain death is the end of meaningful life, revealed considerable irresolution in going
on to talk about the procurement of organs: “We don’t want this patient to expire
before we can harvest the organs, so it’s important to keep them stable and alive,
and that’s why we keep up the same treatment after brain death.” Yet another inter-
viewee acknowledged that “real” death happens when the heart stops: “The patient
dies two deaths.” For these physicians, an organ donor is by definition biologically
alive or, at least, “partially” biologically alive when sent to the operating room for
organ retrieval, because there can be no argument about the liveliness of the princi-
pal body organs, aside from the brain. But the patient has no subjectivity.
Clearly, the ambiguities and contradictions that the psychiatrist Youngner and
colleagues (1985) detected over a decade ago are still present, more than 30 years
after the invention of brain-death. Given this uncertainty, it is not so surprising that
when I suggested that more public education in connection with brain death might
be a good thing, one doctor recoiled at the idea. In his opinion, education should
take place at the bedside only when it is needed and not be open to distortion and
ever more confusion in a public forum, as has been the case, to some extent, in Japan.
Perhaps most revealing of occasional doubts in connection with the status of a
brain-dead individual is that among the 32 doctors interviewed, only 6 had signed
their donor cards or left other forms of advanced directives, and 1 other was unsure
as to whether he had done so. When I pressed for reasons as to why people appeared
hesitant, I was not given any very convincing answers. Doctors said that their fami-
lies would know what to do, that they just did not feel quite right about donation, or,
alternatively, that they supposed they should get it sorted out.
Use of the concept of brain death is currently being subjected to a new round of
debate, and several influential dissenters have emerged in North America who
insist that a massive duping of the public has, in effect, been perpetrated by making
brain death equivalent to the end of human life (Lock, 2002).
In Japan, where the debate about brain death has continued nonstop for 30
years, only 17 procurements have been made from brain-dead bodies. It has proved
very difficult to overcome the profound hesitation that many Japanese, including
many doctors, feel about cutting up entities that they believe are not quite dead. It is
also clear from interviews with medical professionals and among the Japanese pub-
lic that subjectivity is by no means always located in the mind. Many people believe
that a life force circulates throughout the body and that while this remains, that per-
son cannot be counted as dead. Even more important is that a dying person remains
at the center of the family and it is the family and not physicians who decide when
the situation is hopeless and that the ventilator should be turned off—this usually
takes place 3 or 4 days after brain death has been declared, by which time it is usu-
ally much too late to procure organs in good condition.
In conclusion, use of open-ended, semistructured interviews and of observa-
tions in ICUs and elsewhere proved indispensable in carrying out this research.
Without paying serious attention to the stories and concerns that most people can-
not reveal during formal interviews or in questionnaires, the ambiguities and con-
tradictions associated with organ donation and transplants could not be brought to
light. Furthermore, I want to emphasize that it is important to take into consider-
ation the accounts and concerns not only of patients, families, or clients, but also of
medical experts. Very often, health care professionals outwardly conform to the
normalization of extraordinary procedures, whether they are decisions about when

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1418 QUALITATIVE HEALTH RESEARCH / December 2002

life might be terminated, about organ procurement, or about care of extremely pre-
mature infants. Only by carrying out ethnographic research does it becomes appar-
ent that outward appearances can be deceptive.
Ever since the early days of organ transplants, intensivists and transplant sur-
geons have had remarkably little to do with one another. The physician attending
the first patient to become a heart donor in South Africa had to drive Christiaan
Barnard out of the emergency room because Barnard wanted to take over before the
emergency medicine doctor was satisfied the patient was brain-dead, Given that
organ procurement and organ transplants are so utterly dependent on the hard
work, expertise, and good will of intensivists, the time is long overdue for some
mending of fences. Just as donor families and recipients are finally being brought
together, it is important that intensivists and transplant surgeons also begin to com-
municate regularly with each other. Perhaps then claims about a growing shortage
of organs might not be portrayed so starkly as due to the lack of generosity on the
part of the public and to incompetent intensivists who fail to persuade families to
comply with donation.

NOTE

1. All names given to interviewees are fictitious.

REFERENCES

Alexander, G. C., & Ashwini, S. (1998). Barriers to cadaveric renal transplantation among Blacks, women
and the poor. Journal of the American Medical Association, 280(13), 1148-1152.
Fox, R., & Swazey, J. P. (1978). The courage to fail: A social view of organ transplants and dialysis. Chicago: Uni-
versity of Chicago Press.
Fox, R., & Swazey, J. P. (1992). Spare parts: Organ replacement in American society. Oxford, UK: Oxford Uni-
versity Press.
Lock, M. (2002). Twice dead: Organ transplants and the reinvention of death. Berkeley: University of Califor-
nia Press.
Prottas, J. (1994). The most useful gift: Altruism and the public policy of organ transplants. San Francisco:
Jossey-Bass.
Richardson, R. (1988). Death, dissection, and the destitute. London: Routledge.
Richardson, R., & Hurwitz, B. (1995). Donors’ attitudes towards body donation for dissection. The Lancet,
346, 277-279.
Sanner, M. (1994). A comparison of public attitudes toward autopsy, organ donation, and anatomic dis-
section. JAMA, 271, 284-288.
Sharp, L. A. (1995). Organ transplantation as a transformative experience: Anthropological insights into
the restructuring of the self. Medical Anthropology Quarterly, 9(3), 357-389.
Siminof, L. A., & Chillag, K. (1998). The fallacy of the “gift of life.” Hastings Center Report, 29, 34-41.
Simmons, R. G., Marine, S. K., & Simmons, R. L. (1987). Gift of life: The effect of organ transplantation on indi-
vidual, family, and societal dynamics. New Brunswick, NJ: Transaction Books.
Youngner, S., Allan, M., Bartlett, E., Cascorbi, H., Han, T., Jackson, D., et al. (1985). Psychological and
ethical implications of organ retrieval. New England Journal of Medicine, 313, 321-324.

Margaret Lock, Ph.D., is the Marjorie Bronfman Professor of Social Studies in Medicine in the depart-
ments of Social Studies of Medicine and Anthropology at McGill University, Montreal, Canada.

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