Strange Harvest: Organ Transplants, Denatured Bodies, and the Transformed Self

by Lesley A. Sharp

Overview

Strange Harvest illuminates the wondrous yet disquieting medical realm of organ transplantation by drawing on the voices of those most deeply involved: transplant recipients, clinical specialists, and the surviving kin of deceased organ donors. In this rich and deeply engaging ethnographic study, anthropologist Lesley Sharp explores how these parties think about death, loss, and mourning, especially in light of medical taboos surrounding donor anonymity. As Sharp argues, new forms of embodied intimacy arise in response, and the riveting insights gleaned from her interviews, observations, and descriptions of donor memorials and other transplant events expose how patients and donor families make sense of the transfer of body parts from the dead to the living. For instance, all must grapple with complex yet contradictory clinical assertions of death as easily detectable and absolute; nevertheless, transplants are regularly celebrated as forms of rebirth, and donors as living on in others' bodies. New forms of sociality arise, too: recipients and donors' relatives may defy sanctions against communication, and through personal encounters strangers are transformed into kin. Sharp also considers current experimental research efforts to develop alternative sources for human parts, with prototypes ranging from genetically altered animals to sophisticated mechanical devices. These future trajectories generate intriguing responses among both scientists and transplant recipients as they consider how such alternatives might reshape established—yet unusual—forms of embodied intimacy.

Product Details

ISBN-13:	9780520939615
Publisher:	University of California Press
Publication date:	10/04/2006
Sold by:	Barnes & Noble
Format:	eBook
Pages:	322
File size:	2 MB

About the Author

Lesley A. Sharp is Professor of Anthropology at Barnard College and Senior Research Scientist in Sociomedical Sciences, Mailman School of Public Health, Columbia University. She is the author of The Sacrificed Generation: Youth, History, and the Colonized Mind in Madagascar (UC Press) and The Possessed and the Dispossessed: Spirits, Identity, and Power in a Madagascar Migrant Town (UC Press). Additional works focus on themes of body commodification and anthropological perspectives in bioethics.

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Strange Harvest

Organ Transplants, Denatured Bodies, and the Transformed Self

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By Lesley A. Sharp

University of California Press

Copyright © 2006

The Regents of the University of California

All right reserved.

ISBN: 0-520-24786-8

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Chapter One

We Are the Dead Men

Mind over Matter

The human body is a fascinatingly peculiar thing: its size can range from
under twenty inches at birth to an adult stature of more than six feet, and
as it matures it masters the ability to move through the world, first by rolling
over, then later, perhaps, by progressing on all fours in anticipation of a lifelong
bipedal stride. It can propel itself on a bicycle or in a wheelchair, or run
at breakneck speed. Beneath the skin one encounters a dizzying array of systems
that together enable the body to survive as well as perform astonishing
tasks. As the artful renderings of anatomist Andreas Vesalius (1973) illustrate
so vividly, the body's inner workings include the web of the nervous
system, an interlocking musculature complex, an extensive vascular network,
an elegant skeletal framework, and a sophisticated amalgamation of
internal organs that can draw oxygen from the atmosphere, pump and maintain
blood at a stable volume and temperature, and filter and expel inhaled,
ingested, and absorbed toxins.

The brain is frequently described as the nexus of control for this body
complex. This single organ drives the innerworkings in exquisitely complex
ways, enabling us to move, breathe, and sense the world around us.
Whereas the brain, as the control center, governs bodily functions, the mind
is its abstract counterpart, serving as the seat of learning, the emotional center,
and the locus of the self. The mind, understood as such, enables us to
create, preserve, and recall memories, and to form words into speech, manual
signs, and written text; it also generates dreams. We are thus simultaneously
organic creatures, cognitive beings, social persons, and private
selves, categories of existence that are all inextricably linked to this mind-brain
complex. The mind-brain is always at work, regardless of whether we
occupy conscious or slumbering states. This sophisticated complex defines
us as alive, as functioning, and, ultimately, as human beings (Damasio 1994;
1999: 3-31, 317-55; Sacks 1973, 1985).

This exercise in describing ourselves in reference to the mind-brain may
seem truly odd; my attempt to do so certainly strikes me as such. For one,
it is shaped by an extreme form of biological reductionism; for another, it
is an exclusively secular vision, allowing no room for musings on the soul,
for instance. My intention is to underscore the ease with which we comprehend
this view of our bodies. (Whether we embrace it is another matter,
of course.) American culture is permeated by scientific reasoning, represented
quite obviously by the pervasiveness of biomedicine as a dominant
system of thought. Indeed, we frequently allow ourselves to be described in
terms derived from biology, physiology, and anatomy, permitting internists,
pulmonologists, cardiologists, and neurologists to probe and ponder us when
all is not right with our health.

As philosopher Drew Leder reminds us, it is precisely at those moments
when the body breaks down that we become painfully aware of its existence
(Leder 1990; Sacks 1998), and biomedicine provides a framework for comprehending
bodily disorder. At moments of sickness we typically ask, "What
is wrong with me?" (cf. Zola 1978), and the answers are supplied most frequently
by physicians, nurses, or other specialists who explain, "You have
a lung infection," "You've broken your leg in two places," or "You've sustained
a concussion." Thus, within medical parlance we are frequently reduced
to our functioning body parts. More important, we might accept this
model of the body unquestionably and embrace such diagnoses and their
associated treatments with gratitude.

Medical anthropologists have long argued that a pervasive weakness
within biomedicine is the insistent separation of the body and mind in clinical
discourse and treatment. Biomedicine privileges knowledge concerned
with the body's biomechanics, often to the exclusion of both the inner workings
of the self, or emotions, and the individual's place within larger social
or ecological milieus. For instance, surgery occupies a more prestigious position
in the biomedical hierarchy than does psychiatry, and psychosomatic
disorders may quickly be dismissed as patients' fantasies rather than being
read as embodied, covert forms of protest and misery (Kleinman, Das, and
Lock 1997; Sawday 1995; Scheper-Hughes 1992; A. Young 1997). Today even
psychotherapy is rapidly being displaced by approaches that favor drug therapies
designed to tackle problems in brain chemistry (Luhrmann 2000). In
contrast, within medical anthropology one encounters an established tradition
of arguing for greater mind-body harmony in medicine, with proponents
frequently drawing on cross-cultural data to illustrate how other healing
traditions reflect more holistic approaches to human suffering (Murphy
1987; Scheper-Hughes and Lock 1987).

Nevertheless, a dominant cultural logic insists on the primacy of the
mind-brain as a defining principle of our humanity. We are certain, after all,
that we most definitely are not chimps, or dolphins, or lizards. This sense of
difference not only springs from our morphological uniqueness but is driven,
too, by a widely accepted premise within American culture that our brains
are radically more sophisticated than those of all other creatures in the animal
kingdom. The success of anthropology as a social science is certainly
driven by such principles. Our uniqueness as a species is marked by our ability
to generate complex social systems, sophisticated forms of symbolic communication,
and creative technological innovations that enable us to transform
hostile environments into habitable ones. In addition, arguments
about our special abilities are phrased in evolutionary terms, and they rest
heavily on assumptions concerning the primacy of the human mind. As
René Descartes so famously asserted, cogito, ergo sum ("I think, therefore
I am"; Descartes 1999 [1637]). Within a host of other specialized fields-such
as sociolinguistics, cognitive psychology, neuroscience, and artificial
intelligence-it is possible to argue that the mind-brain complex defines
how unique we truly are.

Against such premises, organ transfer emerges as an intriguing realm of
medical practice because it insists on these forms of mind-body bracketing,
yet specialists in the field still struggle to maintain a stable boundary between
the two. Consider these sorts of contradictory circumstances. On the
one hand, the identities of organ recipients are often reduced to their transplanted
parts, so that at transplant events recipients are relegated to such
categories as "the hearts," "the lungs," or "the kidneys." Organ donors, too,
are rapidly reduced to the status of bodies or body parts because both procurement
professionals and transplant surgeons may conceive of them primarily
as repositories of reusable organs. On the other hand, cadaveric organ
donation in the United States is possible because we legally sanction
brain death as true death. The label of death is applied even though the
artificially ventilated donor-patient remains warm to the touch, appears to
breathe, and has a heart that continues to beat within its own chest. Even
more bewildering is the fact that brain dead organ donors are routinely anesthetized
at the onset of procurement surgery.

When we accept brain death criteria, as defined within a clinical framework,
it is because we recognize that what matters is whether the mind, not
the body, has ceased to function. In other words, we care greatly whether
the essence of the individual person is no longer there, and thus the body's
significance in defining the self slips away. A comatose patient, while assisted
by "life support," might thus be described as a broken mind-brain inhabiting
a dormant body. In contrast, a brain dead individual (and, thus, an
organ donor) is a mindless and dead-yet artificially maintained and thus
temporarily functioning-body. The conundrum posed by brain death criteria
problematizes certain assumptions about our selfhood, our humanity,
and our social worth as (non)sentient human beings. It also uncovers subtle
forms of medical unease over what we are certain of, versus what we can
never truly know, about human death. Particularly troubling for all concerned
parties are questions about the timing and detection of death, questions
that quickly degenerate into existential quandaries. This is most
clearly marked by the tension created between brain death and cardiac death
as markers of true or absolute death. Are organ donors dead once they cease
to be sentient beings, or does everyone secretly believe that true death occurs
only when the body itself expires?

Such questions arise because of a flawed logic that insists on death as an
either-or category of (non)existence. As we shall see, a range of involved
parties understands death in more creative and flexible ways, although opinions
remain muted, because to voice them publicly and openly is regarded
as a dangerously transgressive act. Alternative visions defy a dominant ideological
premise of organ transfer, where death occurs at a precise moment
in time, coinciding with the legal declaration of the cessation of brain function
at, say, Tuesday, March 9, at 5:06 p.m. If one embraces organ transfer
as a social good, then one should accept, unquestionably, that brain death is
a marker of true or absolute death. Nevertheless, subsequent cardiac death,
or the death of the body, creeps in as contradictory evidence for nearly all
concerned parties.

In response to these troublesome contradictions, Margaret Lock (2002),
in her comprehensive study of brain death in North America and Japan, has
described organ donors as a category of the "twice dead" (cf. Savulescu 2002;
Shrader 1986). As she illustrates, this model of the double death, so to speak,
is pervasive in transplant contexts: first declared brain dead, the organ donor
later experiences biological death when his or her organs are removed during
procurement surgery. As Lock demonstrates, historicized cross-cultural
comparison proves especially helpful for underscoring that this is a Euro-
American biomedical construction (or struggle). In contrast, in Japan, proponents
of brain death criteria (and, thus, transplantation) have encountered
especially hostile resistance from the lay public precisely because of the widespread
understanding that the body houses an individual's spirit or essence,
and to remove body parts (particularly the heart) threatens a spirit by trapping
it in a dangerously liminal state between life and death (Lock 1995: 7).
Unlike in the United States, where key legislation supporting organ transfer
spans the 1960s to the 1980s, Japan's Organ Transplantation Law took
effect only in 1997. In an effort to recognize a plurality of voices, this law
(inspired by the "conscience clause" of New Jersey's Declaration of Death
Act) allows self-designated donors to "choose between brain death and traditional
death by writing their preference on their donor cards" (Morioka
2001). In essence, Japanese citizens can designate what form of death they
consider legitimate. The Japanese public nevertheless remains skeptical of
brain death and critical of transplantation in general (Lock 2002), which frustrates
Japanese transplant surgeons, a few of whom may have received some
training in American medical or research institutions.

In contrast, within North America (and, more particularly, the United
States), brain death criteria overcame legal hurdles much earlier because of
a more widespread acceptance of mind-body dualism, which stresses that
the self resides in the mind. As Lock and Christina Honde (1990) illustrate,
the arenas that circumscribe ethical debates over medical practices expose
important cross-cultural differences. Whereas in the United States ethical
discussions that shape transplant policy have involved overwhelmingly
those working within the clinical realm, national health decisions in Japan
are regularly subjected to heated debate in the larger public sphere.

In the United States, official medicolegal rhetoric precludes the possibility
that one can die twice. As a result, challenges are quickly silenced, a phenomenon
that is especially pronounced in the realm of organ transfer. Nevertheless,
anthropologists have long known that normative assumptions are
regularly accompanied by unconventional thoughts and actions. Anthropologists
know, too, that cross-culturally there are many ways to die. As
data from a range of societies attest, death is not understood universally as
the moment when a person permanently loses consciousness, or has no pulse,
or when a body turns cold and gray. Instead, death encompasses a range of
other possibilities far less biologically deterministic in their outlook. Separating
definitions of death per se from what are often extraordinarily complicated
ritualized forms of mourning may be difficult (Bloch and Parry
1982; Metcalf and Huntington 1991). The cross-cultural perspective reveals
the limitations of the clinical assertion that the threshold between life and
death is clearly marked by the measurable cessation of brain or bodily functions.
Rather, anthropologically speaking, death should be viewed more
broadly as a social process that allows for the possibility that a person may
gradually slip away.

This is, however, a dangerous assertion within the realm of organ transfer
because it ultimately destabilizes a key component of transplant ideology.
In official contexts-ranging from clinical to forensic-great care is
taken to identify the exact moment when death occurs. More specifically in
reference to organ donors, a shift to considering death as a gradual process
would inevitably generate questions about how a donor died and, potentially,
who might be responsible. Such questions would expose hospital, procurement,
and transplant staff to relentless lawsuits driven by accusations
that these professionals orchestrate the deaths of vulnerable patients under
the guise of ICU care in anticipation of the subsequent surgical removal of
vital organs.

Such accusations in fact shaped the first legislative initiatives generated
as protective measures in response to early instances in which transplant
surgeons faced criminal charges for murdering donors for their organs
(Starzl 1992: 148). I regard as absurdly simplistic the assertion that organ
procurement is a medically sanctioned form of murder. As an anthropologist,
I am nevertheless intrigued by the paradoxes that arise in response to
this particular form of hospital death. Among the most striking developments
is the manner in which transplant ideology most certainly shapes
sanctioned, public sentiments and actions. Thus, I have learned to listen carefully
to what people express privately as their personal perceptions, and how
these may at times coincide with, and at others challenge, medicolegal rhetoric
specifically about brain death. What if, instead of insisting that death
can (or must) be linked to a specific, timed event, we allow it to occur incrementally,
its progress marked by discrete episodes detectible sometimes by
clinical tests, and at others through heartfelt sentiments of love and loss?
As I will show, if we indeed pay close attention to this seepage of covert sentiments,
beliefs, and turns of phrase, we discover a wondrous counter-reality
to the official rhetoric and public face of organ transfer in America.

A MOST PECULIAR DEATH

A Brief History of Donation

Brain death is a truly peculiar category of human experience because its mere
definition dictates that professional and lay parties alike must embrace medical
criteria that contradict commonsense understandings of the evidence of
life. Brain death was first supported by medical specialists who, by the 1960s,
were increasingly confronted with the conundrum of dying patients who
were nevertheless sustained artificially on respirators. Such specialists' recommendations
later shaped federal policy and state-by-state legislative initiatives
that render the practice of acquiring organs from patients diagnosed
as "brain dead" both legally and socially acceptable. A relatively unchallenged
opinion voiced within medical circles today is that brain death criteria
were most certainly developed to produce a supply of transplantable
organs (see, for instance, Cowan et al. 1987; Fox and Swazey 1978, 1992;
Lock 2002; Starzl 1992; P. Young and Matta 2000).

(Continues...)

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Excerpted from Strange Harvest
by Lesley A. Sharp
Copyright © 2006 by The Regents of the University of California.
Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

List of Illustrations
Acknowledgments

INTRODUCTION: STRANGE HARVEST
The Ideological Underpinnings of Organ Transfer
Studying Transplantation in American Contexts

1. WE ARE THE DEAD MEN: MIND OVER MATTER
A Most Peculiar Death
Reconstructing Donor Histories
Body Economies

2. MEMORY WORK: PUBLIC AND PRIVATE REPRESENTATIONS OF SUFFERING, LOSS, AND REDEMPTION
Recipient Suffering and Renewal
Honoring the Dead in Safe, Public Places
The Private Lives of Donor Kin

3. PUBLIC ENCOUNTERS AS SUBVERSIVE ACTS
Bureaucratic Constraints on Social Desire
The Ties That Bind
Claiming the Donor Body

4. HUMAN HYBRIDITY: SCIENTIFIC LONGING AND THE DANGERS OF DIFFERENCE
Dangerous Miracles
Professional Desires to Cultivate Nature
Denatured Bodies and Transformed Selves
Nature’s Body

EPILOGUE

Notes
Glossary
References
Index