Anticipatory Corpse, The: Medicine, Power, and the Care of the Dying (Notre Dame Studies in Medical Ethics and Bioethics) [1 ed.] 0268022275, 9780268022273

Citation preview

J e f f r e y p. B i s h o p

meDicine, power, AnD The cAre of The Dying

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T h e A n T i c i pAT o r y c o r p s e

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noTre DAme sTuDies in meDicAl eThics David Solomon, series editor

The purpose of the Notre Dame Studies in Medical Ethics series, sponsored by the Notre Dame Center for Ethics and Culture, is to publish works that specifically address contemporary issues in the field of medicine. The aim is to foster a systematic and rational discussion of medical ethical problems grounded in Catholic intellectual tradition and moral vision.

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J e f f r e y p. B i s h o p

meDicine, power, AnD The cAre of The Dying

universiTy of noTre DAme press noTre DAme, inDiAnA

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University of Notre Dame Press Notre Dame, Indiana 46556 www.undpress.nd.edu All Rights Reserved

Copyright © 2011 by University of Notre Dame Press

Published in the United States of America

Library of Congress Cataloging-in-Publication Data Bishop, Jeffrey Paul. The anticipatory corpse : medicine, power, and the care of the dying / Jeffrey P. Bishop. p. ; cm. — (Notre Dame studies in medical ethics) Includes bibliographical references and index. ISBN-13: 978-0-268-02227-3 (pbk. : alk. paper) ISBN-10: 0-268-02227-5 (pbk. : alk. paper)

ISBN-13: 978-0-268-15807-1 (web pdf) I. Title. II. Series: Notre Dame studies in medical ethics. [DNLM: 1. Ethics, Clinical —United States. 2. Terminal Care— ethics — United States. 3. Attitude to Death — United States. 4. Thanatology — United States. WB 60] LC-classification not assigned 174.2 — dc23 2011025673 ∞ The paper in this book meets the guidelines for permanence and durability of the Committee on Production Guidelines for Book Longevity of the Council on Library Resources.

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For Nancy Quid enim est quod volo dicere, domine, nisi quia nescio unde venerim huc, in istam dico vitam mortalem an mortem vitalem? Nescio. [ What have I to say to thee God save that I know not where I came from when I came into the lifein-death; or should I call it death-in-life? I do not know.] — St. Augustine of Hippo

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Watermelon Ed Madden

Summers on the family farm, watermelons mark off the days with sweet irregularity, a coda to the lush heat of the afternoon, left bobbing in the cold swirl of the rice field’s well pool, or frosting green in the icebox— the flower fallen in on itself, the node on the vine grown thick and round, grown heavy with the gravity of sweetness. This summer like any other — insects fizzing under lights at evening, and the crickets silent at midday. We are the nephews, we don’t have to speak or cry, or watch the preacher. We only have to grasp the rail that flanks the coffin, lift it, gently, carry it, slowly, from the front of the church

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to the hearse humming outside. The funeral has been well planned — the hymns she chose last spring, the shovels Uncle Henry has waiting in a pickup near the grave. What is not planned is the watermelon. The watermelon Henry wants, retrieved from the nearby shop, and the pale blue cooler of cokes — my brother and I return to the shed blazers and the vivid wilt of silk dresses, return, our arms full of grace: the chunks of pink sugar, the sweet juice, wet seeds and rinds like green jewels on the cemetery lawn.

Used with the author’s permission

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Contents

Acknowledgments

xi

Prelude

1

chApTer 1.

Birthing the Clinic

28

chApTer 2.

Maturing the Clinic

61

Transition One

89

chApTer 3.

The Machinations of Life

96

chApTer 4.

Embracing Death

119

chApTer 5.

Commissioning Death: From Living Cadavers to Dead Brains

141

The Exact Location of Death: From Brain to Sovereign

168

chApTer 6.

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The Sovereign Subject and Death

197

Transition Two

223

chApTer 8.

The Discursive Turn

227

chApTer 9.

The Palliating Gaze

253

Recapitulation

279

Anticipating Life

285

Notes

314

Bibliography

366

Index

393

chApTer 7.

chApTer 10.

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Acknowledgments

Hard questions are best engaged among friends. It is the task of philosophy to engage hard questions. Indeed, the ancients believed that the only way to engage hard questions, that is to say, the only way to do philosophy, is to engage the questions among friends. What follows is offered in friendship to medicine. Yet some of the things that I say could easily sound malicious, as offered by an enemy. They are not. I am a practicing physician who must say these things, but they are said in friendship. So I hope what follows will be read in the spirit of friendship, as if we were enjoying good food and wine in the comfort of a home. Medicine is best learned in community and among friends. One spends hours with one’s teachers, getting to know them, learning from them, and learning to care for them, even as one cares for patients. As early as the Hippocratic writings and even in the Oath itself, respect for one’s teachers achieves very high billing. One spends hours with patients who are suffering. One learns from them, whether student or teacher, for every patient is particular, so particular that no two will be exactly alike. One never ceases to be a student learning medicine at the feet of masters or at the feet of patients. Jean Wilson, one of the editors of the fourteenth edition of Harrison’s Textbook of Medicine and one of my professors, signed my copy of the Textbook. He wrote: “From one student of medicine to another.” Jean is, of course, a consummate scientist, •

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a leading figure in endocrinology for several decades now. He taught me a lot, and he would be horrified to know that what I learned most from him was not the science of medicine. I hope he would be relieved to hear that what I learned best was the art. A student is dependent upon his or her teachers more for their skill than for their knowledge. One has to learn to listen and look, but not to gaze too long. One has to learn how to talk to people, what to say, when to say it. Mostly you have to learn to listen to people; to stand or sit when appropriate. Mostly one has to learn to be with people, especially in the moments of discomfort that one must inflict with penetrating instruments or gazes. One learns best by watching others, the masters, practicing these skills. We are always students, all of us, every time we walk into a patient’s room. I cannot begin to list all of my patients, or even all of my professors in medicine. Yet I would be remiss not to give a special thank-you to Jean Wilson and Daniel Foster. These men are key figures in the field of medical science, but they are giants as men of care. If I retain 15 percent of what they have taught me, then I am in good stead for the rest of my life. A Hippocratic aphorism is apropos here: “Life is short, art is long, opportunity fleeting, experiment dangerous, judgment difficult.” It is as fitting for philosophy as it is for medicine. Philosophy, like medicine, begins in community, one that butts up against questions that are seemingly insoluble. It began for me in an emergency room in 1994. I asked my patient what she did, and she said she was a professor of literature at the University of Dallas. We hit it off immediately, and the next thing I knew I was enrolling for night courses there. Her name was Louise Cowan, and I am not the only student whose life has been transformed by her. There are many other teachers that I must thank at the university: Robert Wood, Lance Simmons, Fr. David Balas, Mark Lowery, and John Norris. Of course, the conversations with one’s dissertation director are indispensable. The kindness and willingness of Philipp Rosemann to assist me went well beyond that of a teacher. The quality of this project was substantially improved by his mentorship, and I am the better for his friendship. Our conversations began over beer, or margaritas, or wine, or over meals at some of Oakcliff’s finest restaurants. Philipp opened a world to me that has transformed how I think about medicine and poli-

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tics, and indeed life. His is a philosophical life; he is devoted to the life of the mind, and any life of the mind is also a life of concrete living. I also know that he engages those who are downtrodden, those put at the margins of society, in ways that only saints do. His goodness goes unnoticed by many. My thinking about everything from poverty to academic life has been influenced by Philipp. Philosophy is surely best done with friends such as Philipp. Occasionally one happens upon someone whom one would have never known except for grace. I have never worked with him; I was never his student. We have no reason to have met each other, except by grace and the common heritage and ethnicity that we share, that of being Texan. At a meeting of the American Society for Bioethics and Humanities in 1998, I was standing alone, not knowing anyone, when the booming voice of H. Tristram Engelhardt startled me. “Sir,” he said, “you look like you could use a drink.” All philosophical friendships should begin thus; indeed all friendships should begin thus. Tris has nurtured my career, concerned himself with my soul, and obsessed over my health, requiring numerous publications, conversion to the Orthodox faith, and plenty of gin and tonic for the prevention of scurvy and malaria and for the improvement of my constitution. All friendships, perhaps even all philosophical friendships, should begin thus. I must also thank my colleagues at the University of Texas Southwestern Medical School, especially James Wagner and Gary Reed, for allowing me to teach ethics at the medical school. I extend a hearty thanks to John Sadler, Frederick Grinell, and Tom Mayo, whose friendship and encouragement kept me from losing heart. I also thank my colleagues in Britain, John Bligh, Sam Regan de Bere, Lynn Monrouxe, Charlotte Rees, and Tracy Collett, for allowing me to bounce ideas round with them. I am especially thankful to Professor Alan Bleakley for our discussions about contemporary philosophy and for his insights into Foucault. I have never met a colleague so broadly read and so genuinely engaging. One friendship in Britain stands out among all others. The hours I spent in a cottage near Carnbargus in Cornwall, in the beautiful Cornish countryside, with Professor Anthony Pinching will stick with me forever. I also had the good fortune to work at the fine institution that is Vanderbilt University, in the Center for Biomedical Ethics and Society.

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My colleagues there gave me ample opportunity for discussion and critique. I thank Ellen Wright Clayton and Larry Churchill for their mentorship. I thank Elizabeth Heitman and Mark Bliton for the breadth of their knowledge and for stopping to chat in the halls; and Kyle Brothers for his enthusiasm for learning, allowing me to think out loud through many of the problems that I encountered along the way. I extend special thanks to Joseph Fanning, Jill Fisher, and Joshua Perry for reading various sections of this work and providing gentle scrutiny of the thinking that animates it. I am especially grateful to a group of graduate students who read a version of this as part of a class, despite the professor insisting that they need not humor their professor. Kyle Brothers was the instigator of a class called Alternative Bioethics, in which this work was read alongside others. I am thankful to Rachelle Barina, Trevor Bibler, Andrea Sawyer, and Matthew Westbrook. I am especially thankful to Devan Stahl, who also participated in the class and offered both scholarly feedback and editorial comment. I also wish to thank my new colleagues in the Albert Gnaegi Center for Health Care Ethics at Saint Louis University. While the majority of this book was written before my arrival, I am thankful to Griffin Trotter, Dan Bustillos, Stephanie Solomon, and James DuBois for their encouragement to get the book finished. My wife is fond of saying, “There are not great writers; only great re-writers.” The editors at the University of Notre Dame Press have reminded me of that, especially Rebecca DeBoer, who has helped me to clean this book up and make it presentable for public consumption. I also want to thank Chuck van Hof for seeing something in the book from very early on. Scholarly communities are diverse in their gifts and talents, and it takes many to produce books. These people have been the community of scholars, teachers, and professionals who have most influenced my life in some instances, and shaped this book in others. Yet there are more important communities. My mother and father, Diane and Roger Bishop, instilled in me a firm belief in right and wrong. My sister and brother-in-law, Christa and Jay Otto, remind me constantly of my humble roots in the farm; but at least it was a farm in Texas. My brothers were sources of encouragement by simply asking with pride, periodically, what I was writing. Thanks to Nathan and Matthew Bishop, each of whom married well above themselves to two beau-

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tiful Latina women, Angela and Catherine, who have enriched our family. Friendship among family is a better form of friendship. I conclude with gratitude for the gift of my daughters. For Madeleine, Isabel, and Lydia, there are not words to explain how love of others can transform the one who loves. Finally to my wife, Cyndy, who has put up with my life in medical school, then in residency, then in graduate school, then with a move to England, then to Nashville, Tennessee, and most recently to Saint Louis, Missouri. She has shown me a philosophy and theology of love in action. Nothing that I have ever written or will write will say more about love and friendship than she grants to me daily. She is the sine qua non of my life. Her friendship and love transforms all that I do, all that I am.

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Prelude

One Sunday morning several years ago, Nancy met me after the early service at church.1 She walked up to me with the urgency of a determined woman. She said, “Jeff, I am yellow, and I need you to be my doctor.” I turned my eyes from engagement with Nancy to look carefully with the clinician’s gaze into her eyes. There it was: the ugly color of death — greenish yellow— looking straight back at me. I tried to contain my horror. Painless jaundice means one thing to a doctor — pancreatic adenocarcinoma, a cancer with few treatments and no cures. She noted that she was on a medication that could cause drug-induced hepatitis. With unrealistic hope, I focused on this medication as the probable culprit, reframing what she had read on the Internet about what being yellow means, telling her that the medication is possibly doing something to her liver. I told her not to take the medication that day and to meet me at the clinic first thing in the morning. She arrived at 8 a.m. on Monday morning. I sent her immediately for blood work and fit her into my schedule. I then took a more thorough history, and after an examination, reassured her that nothing bad showed up on exam. After all, nothing really jumped out at me except for the painless jaundice; but then, I knew what this meant. I ordered an abdominal sonogram, and fortunately, the radiology department could perform the scan that morning. After I sent her to radiology, I pulled •    1

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her lab results up; they showed a clear pattern of biliary obstruction. Something was blocking the main bile duct, preventing her body from clearing the bile, which resulted in her jaundice. The cause would most likely be a tumor of the pancreas. Then, the page from radiology came around noon, giving me the definitive news that I had not wanted to hear. I did not need to have specialized training in reading sonograms to see it. The tumor in the head of the pancreas was clearly visible. Thus began a long dance with death. Nancy and her husband had adopted a newborn daughter when Nancy was 41 years of age and her husband, Tom, was 57. That fateful Sunday morning, Nancy was 49 and Tom was 65; their daughter was eight years old. We did have a few occasions for hope. What I thought was a pancreatic adenocarcinoma (a virtual death sentence) was in fact a neuroendocrine cancer of the pancreas (cause for a modicum of hope). On CT scans and other radiological studies for neuroendocrine tumors, the tumor appeared to be contained in the head of the pancreas. Nancy underwent a surgery called a Whipple procedure, which is a large, extensive surgery usually taking about fourteen hours. Fortunately, she was a runner and had the physiology of a 25-year-old. She flew through the surgery. After surgery, Nancy felt great, and she and her family believed, and her doctors hoped, that the tumor had been resected completely. Everything had gone according to plan; we were all very hopeful, and it appeared that the tumor was removed with her pancreas. That optimism all came to an end with a three-month follow-up CT scan. The scan showed that the tumor had returned, and with a vengeance. There were flecks of tumor all over her liver — some very large ones, some rather small ones. It had already metastasized to her liver despite tests to the contrary before her surgery. I knew then, along with my surgical and oncological colleagues, that death was inevitable. We began to search for different therapies. At that time, I told her that there might come a time in which I would tell her that there were no other options and that she was going to die no matter what medicine had to offer. She was able to hear my warning, but she quickly made me promise only to speak of it again if she was actively dying and nothing could be done. We agreed never to talk of it, unless— in her mind, until in mine — that time came. Nancy would not remember that con-

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versation. She wanted to remain positive; she had to live in order to raise her daughter. Nancy’s eight-year-old daughter became the focus of Nancy’s approaching death. The motivation to stay alive for her daughter drove Nancy to pursue therapies that were to have little benefit. The will to live in order to see her daughter graduate from college, or perhaps just high school, drove her to pursue treatments that none of her regular doctors thought would work. Given her husband’s age, Nancy feared that if she died, no one would be around to raise their daughter. Nancy died at the age of 51, two days after her daughter left elementary school. Pursuing these treatments meant time away from her daughter — time that could have been spent preparing her daughter for the inevitable. Yet death and its denial also gave Nancy a kind of purpose. Death threatened to take it all away, yet death also put the whole of her life into perspective, allowing her to understand fully how precious her daughter was to her and how desperately she wanted to be alive in order to raise her daughter. Death threatened Nancy’s life; it threatened the very things that she valued. And yet in the denial of her death she was able to find her purpose and to give her life meaning. The passing away of things, the fluidity and flux of life, brought into focus the value and importance not only of life, but also of a myriad of other factors and people in her life. Yet can medicine conceive of death with such paradoxes? Medical science sees its role as providing therapeutic choices in the face of threats to life. On the one hand, medicine can attempt to manipulate, to “fix” the failing biology. On the other hand, medicine can attempt to “fix” the psychological wound, the sense of what is lost in death. Yet these are not horns of a dilemma. Contemporary medicine deploys both “fixes” simultaneously. For a patient like Nancy, the technological “fix” was deployed to control the mechanism of her failing body after the tumor began to wreak its havoc. When oncologists and surgeons told her that no therapies were indicated now that her liver was chock-full of cancer, she underwent “experimental” radiation treatments at another academic institution in a distant city. However, she was not allowed to enroll in randomized controlled clinical trials (experiments) because the trials were designed for those in the last six months of their lives, for palliation.

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Nancy liked the fact that she had more than six months but did not understand why a treatment that might help those in the extremity of life would not enroll her. At the same time, Nancy would not have wanted to be in a randomized trial; she wanted the experimental drug, not the placebo or the “usual” treatment.2 Thus, she pleaded with these doctors to give her the experimental drugs, even if she was not enrolled in an experiment, in a clinical trial. The theory behind the radiation treatment seemed sound. The doctors would attach a radioactive isotope to a peptide (a short protein) that the tumor takes up in great quantity in order to deliver high doses of radiation directly to the metastasized tumors. A similar approach is used to treat certain forms of thyroid cancer. However, while the treatment seemed theoretically feasible, there were absolutely no data to support its use. The doctors gave these drugs to Nancy, yet there was no sign of improvement after a course of treatment with the experimental drugs. When this failed, Nancy opted for forms of treatment directed at diminishing the blood supply to the tumors through interventional radiology. Radiologists would inject the blood vessels feeding these tumors with high doses of caustic materials to clot the blood vessel and thus starve the tumor of its blood supply. Even though this therapy can be directed only at the larger tumors, Nancy’s hope was to obliterate the smaller tumors as they got bigger — a hope not informed by medical science. About twelve months into this ordeal, I could tell that Nancy knew subconsciously that we were in the mode of slowing down her death, though she persisted publicly in believing in cures. When these tumors were not destroyed and when the smaller ones got larger, she insisted on believing that the interventional radiologist could inject the arteries feeding these tumors, keeping her alive indefinitely, hopefully long enough to see her daughter through high school. When the tumors grew too large despite interventional therapy, she began to have obstruction of the larger bile ducts both outside and inside her liver. She underwent more treatments, with stents being placed to keep the larger bile ducts open. Things got worse, and she even underwent treatments to drain the blocked bile, with tubes going from outside her body through her skin and directly into the bile ducts, in

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hopes of reducing her symptoms. Then she got ascending cholangitis (an infection deep in the bile ducts of her liver), despite these treatments. She also went into an altered mental state called hepatic encephalopathy. The toxins normally cleared by the liver and emptied into bile build up, causing mental confusion. Nancy received antibiotics and had the bile tubes replaced in order to treat the infection and to clear her confusion. At the same time as it deploys all of these technologies, medicine treats patients like Nancy for their psychological grief. In other words, we can “fix” her psychologically by guiding her from denial to acceptance.3 We were able to provide good psychological support for her, as well as good social support through home health nursing. Nancy had wanted to be so positive that she would not entertain the possibility that our technological interventions would fail. After her third bout of ascending cholangitis and hepatic encephalopathy, and while she was lucid, I reminded her of the conversation, that there might come a time when I would tell her that death was inevitable. She did not remember that conversation about stopping aggressive therapeutic medicine, but subconsciously she must have, because she resigned herself to the idea of home hospice care without much of a fight. That is when full psychological, social, and spiritual support came into relief for her. Nancy found the whole ordeal of psychosocial counseling extremely patronizing. She did not like people probing deeply into her psychological life, her life with her daughter, her life with her husband. She did not like the sense that everyone, including me, knew that she was going to die and that people kept pointing this out to her, even if only implicitly. She was a remarkably intelligent and educated woman. She would have known of Kübler-Ross; she knew that she would fall into a phase of grief known as denial. She did not like the fact that counselors were trying to move her along to acceptance. Even if this goal is not the stated goal of psychological counseling, it is the implicit one. After all, people who are dying are so much easier to face if they have accepted the fact that death is at hand. But acceptance meant she would not be able to raise her daughter; acceptance meant failure to reach this goal. She found the psychosocial support demeaning and patronizing, all along, but especially when she moved to hospice care. A chaplain for the home hospice company came by her house. Nancy found this demeaning and

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outrageous because she was a faithful Christian and her own priest had been involved the whole time. This chaplain knew nothing of her, of her spiritual beliefs. She needed her priest, not the generic chaplain — the person who can minister to all faiths, and as such, the person of no faith.4 So the holistic care that was provided all along, even the holistic care that was provided in hospice care, could not assist Nancy, for her goal was elsewhere: living to raise her daughter. Thus, death would threaten to take her away from her daughter; death would focus her on staying alive for her daughter. Death would take away all that was important to her, yet all that was important to her came into relief because death was on the immediate horizon. Can medicine with its “fixes” envision death as both destructive of meaning and conducive to it? Can medicine with its “fixes” really manage patients in a way that does not do violence to those things held most sacredly, values that come most clearly into relief in and through the clarity provided by the threat of death? Can a kinder, gentler medicine — a sensitive, caring, biopsychosocial medicine, even a spiritualized medicine (or is it a medicalized spirituality?) — act as a counterweight to the coldness of technological cures? Does the mere presence of a biopsychosocial medicine bring back the humanity that is lost when technologies are deployed? If we believe that such a medicine — call it a biopsychosociospiritual medicine — is possible, why is it that so often patients find themselves faced with a medicine striving to give them life, only to find it a demeaning experience in their deaths? When medicine shifted to a biopsychosocial model from the biomedical model, the thought was that by not only introducing the biological features of life into medicine, but also by allowing the disciplines of psychology and sociology to contribute to medical care, one could more adequately address the whole person. Yet the question still remains: is the kinder, gentler medicine really kinder and gentler? Or is it a mask or a cloak for the cold ground of technological mastery of the living and dying body? Or is it a pall, a death shroud, covering over death, making it more palatable through palliation? Is the biopsychosocial medicine thereby more patronizing than ever, because it promises humanity but cannot deliver without making the patient an object of disciplinary power? Are the dying not more expertly controlled with the

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psychologist, the social worker, the chaplain evaluating with their various tools of assessment, deploying their disciplinary expertises? No doubt, psychologists who provide care for patients with cancer will think that somehow I failed as Nancy’s doctor, or that the psychological support was not as good as it could have been, or that something else could have been done to support Nancy. Social workers will no doubt think that Nancy’s support mechanism was not strong enough, despite the presence of her husband, mother, father, sister, brother-inlaw, and numerous friends from her church. No doubt, palliative care experts will think that something more could have been done to assist Nancy to move from denial to acceptance. No doubt, chaplains will think that the pastoral care provided by her priest was not enough, or that he was not skilled in dealing with people who are dying. I say “no doubt” because I have heard all of these comments from colleagues either specifically about Nancy’s care, or about others like Nancy who will “not go gentle into that good night.”5 I have even had these thoughts myself. After all, there is a strong belief in the efficiency and effectiveness — the two great metaphysical and moral principles of modernity — of medical interventions. Whether those interventions are technological or biopsychosocial, the belief is that they will work if carried out with proper technique. Shouldn’t we be able to manage such patients better? Are we not getting better at managing death? And why, when it is managed, perhaps even when managed well, is the whole process so dehumanizing? Or is it that death itself cannot be controlled, cannot be managed?

cult u r e  o f  l i fe  v e r s u s  cult ure o f Deat h

The ambiguous understanding of death that affects the lives of particular people, like Nancy, is also manifest at the level of society. Medicine is about preserving life, or making life a little easier, yet the coldness of medicine in its mechanical (technological) and disciplinary (psychosociospiritual) aspects results in a life that is often perceived to be worse than death. And when a life being lived is somehow perceived to be worse than death, there is the inevitable question about how death can be managed, either through the deployment of biopsychosociospiritual

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medicine in the dress of palliative care, or through doctor-assisted suicide. This book is an attempt to explore how our social understandings of death come to structure medicine, and how medicine comes to construct for us our care of the dying. Scholars have examined how hospitals shape the end of life,6 but the thesis of this book is that our medical notions about death — notions informed by medicine’s philosophy — have shaped the way medicine cares for patients, and the way patients perceive their dying. In short, medicine’s epistemology and metaphysics can be seen in the way medicine cares for the dying. Not only do the practices surrounding death betray the social structure of medicine, but these practices and these social structures — deployed for the purposes of caring for the dying — betray something deeply held within the psyche of the Western world. In what follows, I shall claim that there is a return of the repression of death, which can be seen in the care of the dying, for death is at the center of medicine, at its core, and even at its cor (heart in Latin). In part, it is the care offered — or not offered — to the dying that has caused so many people, such as Wesley J. Smith and Pope John Paul II, to recoil from certain medical practices.7 In a 1993 visit to the United States, the pope called for the faithful to usher in a culture of life.8 The call to action has been framed in oppositional, almost apocalyptic terms in John Paul’s encyclical letter Evangelium Vitae — the Gospel of Life.9 After all, it ends with a reflection on the book of Revelation. John Paul reads the image of the Blessed Virgin in the Apocalypse of John as the image of the mother of life. She is the mother of life in travail, in labor for humanity. She opposes the forces of the beast of tribulation, which represents the forces of death. While the encyclical’s theological framework is much broader than the apocalyptic and oppositional framing of life and death, John Paul’s call to action and his remedy for the culture of death is cultural agon (a´ γιoν, Greek),10 the cultural struggle to usher in a culture of life. The pope alludes to a much richer theology at play beneath and beyond the agonal,11 oppositional struggle. After all, the death of Jesus, the God-man, is the central salvific act, and his resurrection is not just the reversal of death and return to life — opposing life to death — but the transformation of life and death themselves. But in the encyclical the pontiff never makes fully explicit the theological paradoxes and mysteries of life and death. As such, we are presented

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with the oppositional struggle between the culture of life and the culture of death. Likewise, in Wesley Smith’s Culture of Death, the relationship of life and death is wholly oppositional. Smith claims that his book is meant to be a wake-up call to civilized society in order to draw attention to what has happened to medicine while we, as a culture, were sleeping. Like the moral, political, and cultural framing of John Paul’s letter, Smith’s work sees life merely as the opposite of death, and death as the opposite of life. For Smith, the struggle of life and death is out of balance, with those called to protect life — particularly, practitioners of health care, but also the law and the political structures of government — sidling too close to death. Smith sees the issue mainly in the shift from life as sacred to the idea that a certain quality of life is sacred; and that means that other lives with different, or lesser qualities, are dispensable. In addition, Smith understands the struggle between the culture of life and the culture of death as oppositional in another way. He depicts a contemporary medicine that has lost its cultural heritage, in that it has lost its historical roots in the older, Hippocratic practice of medicine. On this view, our culture and the culture of medicine have shifted while we weren’t looking. Society is in decay, for Smith. Of course, this view of the loss of an older, Hippocratic form of medicine has made itself known every few generations throughout the history of Western medicine. As pointed out by Dale C. Smith, whenever medicine feels under threat, a romantic longing for the old Hippocratic medicine rises up.12 This longing for the good life in the past does not in itself mean that Wesley Smith’s version of the story is wrong. However, it is indeed odd to think that there has been real continuity between Hippocrates and the medicine of today. Medicine has forgotten the originary good at its core, or so the story goes, according to Smith. Yet, oddly enough, the oath itself prohibits the Hippocratic physician from treating with surgery, and if not the oath itself, certainly the Hippocratic writings advise the physician to leave, indeed to abandon, the patient when his services cannot help. Moreover, there is little evidence that doctors have taken the oath throughout the majority of time in the history of Western medicine.13 Thus, it seems to me that the underlying cause for Smith’s fears, as well as John Paul’s, lies elsewhere. Smith never fully gets at the heart

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of the problem but merely documents what many perceive to be troubling. Yet this concern is no right-wing, conservative conspiracy theory, as it is often declared to be by those of a different political persuasion from that of John Paul or Wesley Smith. In fact, disability-rights scholars have been saying something very similar for years.14 Their resounding cry, which is also the name of the movement’s largest activist group, is “Not dead yet!”15 And their tactics are meant to be disruptive and to challenge the normalizing gaze of medicine and bioethics.16 Many have pointed out that new technologies, such as pre-implantation genetic testing and prenatal screening, have resulted in the termination of pregnancies merely for the reason that the fetus is likely to be disabled.17 The whole reason that these tests exist is to prevent people who cannot hear, or who will be disabled, or with a myriad of other conditions, from being born.18 Such policies of screening are structurally discriminatory, according to disability-rights scholars.19 Other scholars have pointed out that films such as Million Dollar Baby and Mar Adentro implicitly promote euthanasia for the disabled.20 The critiques emerging out of the disability-rights community are the most challenging to the heart of Western medicine, even more so than those articulated by the pontiff or by Smith, for they go to the heart of the power of medicine to name and then create the normal, and to obliterate its other.21 These scholars and activists are asking: why do we look to the body as the source of disability? All of our bodies are ‘broken’ in various ways,22 after all, but society has made it easy for some bodies to flourish, while oppressing other bodies and indeed destroying them through fetal abortion, legalized killing, or medically assisted death.23 Their point is that once society has made it easy to get around in a wheelchair, people who use wheelchairs will be seen in no different light from those who wear eyeglasses.24 Yet these voices are never fully heard or understood by medicine.25 Disability is truly medicine’s other. The apprehension perceived by the disability community, the late pontiff, and Smith was made clear with the publication of Sharon Kaufman’s And a Time to Die. Kaufman’s thorough ethnographic description of how the hospital shapes death seems to confirm the suspicions of those who fear that medicine has come too close to death. Kaufman documents the final pathways of patients who are dying. With novel

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insight, she uncovers the way in which Medicare, Medicaid, and private insurance funding structure the way people are cared for. Patients who are admitted to the hospital with acute problems and decide that they want to allow “nature to take its course” can be admitted for palliative care, and the financing of that care will be paid for. However, if a person is admitted with the very same set of problems but chooses an aggressive course of care and pursues this course of care for a number of days or weeks, and then decides to stop the antibiotics or fluids because of the extraordinary nature of these relative to the life she is living, it becomes very difficult to pay for it. Once the patient stabilizes in the hospital, “she can’t die here.”26 Thus, doctors, nurses, social workers, or case managers are compelled to begin to convince patients either to be aggressive so that the patient can be moved along through the social apparatus of the hospital, or to switch care to nontherapeutic care so that she can be moved home or to a nursing home for hospice/ palliative care. According to Kaufman, and I am in agreement with her, this desire to move patients along sets up the problematic of modern society described by Giorgio Agamben. The politics of life, or biopolitics, creates a no-man’s land between life and death, where the distinction between the two comes down to a decision. Kaufman names Agamben’s no-man’s land the gray zone of indistinction. As I have noted elsewhere, those in this zone have bare life and therefore deserve the protections normally afforded to the living, but they have no chance at the good life.27 The only thing that allows us to abandon a person’s life is the decision by her own sovereign will to abandon herself from the protections normally afforded the living. Death must be chosen, as Kaufman demonstrates in her empirical descriptions of the social apparatus of the dying, and it must be timed. Further feeding the suspicions that medicine has sidled too close to death is this aspect of timing death. Kaufman notes that doctors, while terrible at prognosticating death,28 usually are able to accurately predict when someone is actively dying. Anyone who has worked in hospitals as a doctor, nurse, case manager, or social worker will recognize Kaufman’s description.29 Doctors, nurses, case managers, and social workers all know when the time for death has come. At that time, there is a family meeting in which families are eased (or not) into the

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reality of the imminent death of the patient. Kaufman describes one of these in great detail, bringing into sharp relief all the ambiguities about death and decision, and the time of death in the space of the bureaucratic apparatus. She points to the ambiguities of the need to make decisions quickly and seemingly on the spur of the moment, and the necessary waiting between moments of decision, all structured by the social/bureaucratic apparatus of the hospital. Kaufman describes two pathways to death. The first is the heroic measures pathway, in which the patient receives virtually every kind of medical intervention, from feeding tubes to ventilators to fluids to antibiotics, right up to within a few days of dying, when suddenly the mode of care changes. On the second pathway, the patient hits a revolving door. The patient is admitted and treated with a short hospital stay but never returns to his previous level of functioning. The patient goes home or to a nursing home, only to become sick again, requiring re-admission. This time the hospital stay is a bit longer, a little more difficult. The patient is again discharged, and the whole cycle is repeated again, each time the hospital stay becoming longer, the interval out of the hospital becoming shorter, until finally the patient, or the family, decides — after much prodding by the health-care team — to allow the patient to die. As a medical doctor, and as someone who has acted in the capacity of the ethics consultant for a large university hospital, I have participated in many of these family meetings. Family have believed all along that the medical interventions to which they have agreed are working. Some families see successes where doctors and nurses do not. The family participates in decision after decision, all framed, as noted by Kaufman, by the social apparatus of the hospital and its warped sense of time and space. And the patient’s family reads this sudden change — although to the health-care team it is not sudden — when the doctors start to give very negative descriptions. Terms such as “quality of life” and “dignity” are bandied about. Notions such as “letting nature take its course” or “letting God decide” are used by the health-care team. Meanwhile, as Kaufman admirably describes, the patient’s family becomes more and more bewildered. In my own experience, coming into these situations as the ethics consultant, the family begins to think the patient’s health-care team is trying to usher him along to a quick death, or to “move things along,” as Kaufman puts it. It is no wonder, as Kaufman notes, that

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families become confused about the finer distinctions between killing and letting die, or suicide and homicide; as we shall see, it is a confusion to which ethicists and doctors continue to add and in which they participate.

s us p i c i o n s  c on fi r m e D

Kaufman’s account captures precisely the fears articulated by John Paul, Wesley Smith, and the disability-rights activists. In my opinion, they, along with other scholars, have picked up on something that should not be dismissed quickly. Their clarion calls should cause alarm — calls that perhaps have been too easily dismissed by the rest of society. There is indeed something rather odd about the fact that those who study human life in depth in its biological, social, and psychological aspects should become the ones who come very close to the zone of indistinction, when decisions about life and death are confused and the social apparatus of medicine comes to look as if it is promoting death. Even if society and modern medicine decide that active physician-assisted death is an acceptable practice, it is ironic that for much of its recent history, the motivation for modern medicine was just the opposite — to keep people alive. Was that motivation somehow wrong-headed? There is something unsettling about the power of medicine when it brings its expertise to implementing the norm, or normality, when medicine deploys an entire social apparatus to make people normal. Yet the oddness is perhaps even more acute when doctors take away a life that is perceived to be abnormal, or when it is perceived to have abnormal amounts of suffering, or when the patient’s predicament is outside the norm of human comforts. It is more than problematic for many practitioners of medicine when medicine engages in actions that, if placed in any other social context, would be appalling to us. What kind of political space has medicine carved out for itself? Kaufman notes the temporal aspect as well as the spatial, by drawing attention to the movement of the patient either to the pathway of heroic measures or the revolving door pathway. It is surely true that if the actions carried out within the political space of medicine were carried out in any other context, they would be beyond the pale.

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The big moral questions about medicine and life and death are obvious. I propose to look more closely at other factors. Take the experience of an acquaintance of mine who was on a lung transplant list. She needed someone to die in order that she might live. Waiting (hoping?) for someone to die, so that she might live — perhaps even several people to live other than herself — was a surreal experience for her, fraught with guilt and hope. Or, take as an example Margaret Lock’s description of her experience as she watched a certain patient being prepped for surgery. Like any other person about to go into surgery, he is on the breathing machine; he is asleep, or at least appears so; but he is really dead.30 His (its?) organs are to be removed. Sure, the person had been pronounced dead, legally speaking, but his beating heart and pink kidneys and fleshy liver do not betray a dead person. Or take as an example the rite of passage of most medical students in Western countries. Is it not odd that their first patient is dead, literally patient beneath the dissecting knife? And to make it odder still, the first dead body that many medical students have ever seen is the cadaver, that anonymous person who has no social or psychological life, no family, no context. This patient is dead, and thus truly patient to the manipulations of medical knowledge. This dead body is the object from which medical students will learn in order to be of service to others whom they hope to keep alive. Oddly, the dead body does not appear anything like the living body; death obscures life after all, yet it is death that is first observed. So the medical study of life originates with a decontextualized dead body; the body of the dead cadaver represents the bodies of the living. There are other oddities that have become routine in the care of the dying. For example, there is a certain arrogance in medicine when it presumes to know the proper social or psychological response to the threat of death. There are actually diagnostic categories with criteria for normal and abnormal bereavement reactions in the Diagnositic and Statistical Manual of Mental Disorders.31 What is an appropriate grief reaction when someone is faced with death? What is a normal period of grief, and what is an abnormal grief? These are the sorts of questions that medicine and psychiatry attempt to answer empirically, or expertly. Once the questions are answered, the whole of the discipline’s power —

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disciplinary power, in Foucault’s sense of the phrase — can be brought to bear on the person who is grieving. Our culture is more than willing to accept these medical practices that are subtly laden with power that in other contexts would be unsettling — when practitioners of medicine open dead bodies, or remove live organs from legally dead people, or define normal grief reactions. Why? Because they are done with good intention and in a proper social and political context. Is the alarm felt by John Paul, or Smith, or disability scholars and activists not merely due to the fact that life and death are opposed in an agonal cultural struggle? Or is it that at the heart of medicine, in the soul of medicine, there is a paradoxical relationship between life and death? After all, in a way, does medicine not need death as its motivator and as the ground on which its knowledge base stands? Is death not needed to educate, to transplant, and to research? I shall argue that, contrary to Kaufman, it is not time and waiting that shape death, but space. The “pathways” that she describes go nowhere. They are abstract spaces created by International Classification of Disease tables and Medicare reimbursement tables. Kaufman notes how these features shape time, but it is precisely the abstract political space of tables used to codify disease — but interestingly not death — that distorts time; for one cannot die naturally, but only from disease according to the tables. The pathways described by Kaufman are not pathways so much as they are well-bounded spaces in which movement and therefore time are caught in the immanent chain of mechanized events — both social and bodily events —finally ending in stasis of the dead body. Thus, it is the spatialization of time32 that distorts our dying. It is in the dead body that the flux of time can be captured in the space of the body, and medicine and medical technology are built upon this truth. The denial of death that so many have noted is only one facet of the thesis of this book; another facet to which I shall draw attention is that it is death that is at the repressed core of medicine, and indeed much of contemporary society. It is death, after all, that motivates medicine, as Daniel Callahan points out.33 Yet medicine is no simple and explicit quest for immortality, even if, structurally and politically, it seems to be on such a quest.34 The original discussion about quality of life was primarily about when

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medical interventions went too far.35 Yet the perception today is that quality of life has become the sole focus of medicine.36 Yet if medicine is about quality of life, why are so many people so afraid to die and why do they demand technological cures over quality? Why are our intensive care units filled with those who have no hope of return to a meaningful life? Why does Smith claim that once medicine became focused on the quality of life, it ushered in the “culture of death”?37 At one level, practitioners of medicine have no doubt realized that their striving after life — an implicit and structural quest for immortality, even if not fully acknowledged as such by medicine — led them down the path to sustaining patients in states of life that were worse than death. Against the sentiment of a John Paul II or a Wesley J. Smith, isn’t a contemporary medicine that focuses on quality of life an acknowledgement by the medical establishment that the implicit quest for immortality is wrongheaded? Should medicine not acknowledge its finitude by acknowledging that human life is finite? Surely, with medicine increasingly acknowledging its finitude, we can move away from the quest for immortality. So why is it that the new emphasis in medicine that has shifted away from the idea of prolonging life at all costs — relinquishing the implicit drive for immortality — is perceived by many as the primary sign that we live in a “culture of death”? Is it not also true that the “culture of life” as envisioned by technological medicine is in fact a culture of death, in that the technological imperative is a kind of quest for immortality? Are those who accuse today’s medicine of being a culture of death now demanding that medicine embrace the quest for immortality? Are these not the very people who hope for life eternal in a life beyond the grave? And for those who would embrace death, due to a poor quality of life, is it not equally odd to think that death might be the proper means to achieve a quality of life, in ending it, or that the quality of a life might be so bad that the quality of death might be its counterpoint? In what sense can death be said to be better than a certain quality of life? And if we, as a culture of medicine and more broadly as a society, are so bent on improving the quality of life, why is it that patients still find themselves in intensive care units enduring lives worse than death, just as they did in the 1970s?

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The great paradox in all of this, and the subject of this book, is that death serves as the cultural and political motivator for medicine. Indeed, one could claim that medicine —Western medicine, at least — is founded in a dream as old as humanity itself: to defer death. For death and the disease that is its harbinger are the most brutal reminders of the radical finitude of human existence. Death is the end of all meaning in and of (this) life. And because of this, humanity dreams the dream of eternal life, health, and youth — a dream that, as Plato points out, some of us attempt to realize by immortalizing ourselves in works of art or literature, others of us by erecting buildings that carry our names, and most of us by procreating in order to perpetuate our kind.38 Let us say, then, that the dream of eternal life in the face of death is what animates all civilization, all creation of meaning. If this claim is correct, then medicine is one part of the enterprise of human civilization, an enterprise that keeps aiming at eternity precisely because of the sting of death. From this point of view, death is not only destructive of meaning but — paradoxically — foundational to meaning as well. I will show that what modern medicine fails to recognize is that death not only represents the ever-receding frontier of medical progress, but also sits at the epistemological heart of medical science itself. For Nancy, death threatened all that she knew as valuable and important, and at the same time, death also brought directly into focus the value and importance of living. Modern medicine, I submit, has failed to respond to this dialectics of life and death in an adequate manner, and its response leads to lives worse than death in the technological manipulation of the dying. In viewing death exclusively as the destruction of meaning, medicine has aimed to do more than alleviate suffering: without realizing it, medicine hides death with technology and dissolves death in discourses. In short, medicine seeks to remove death’s sting from the human community. Yet, like comedic heroes of literary tales, medicine comes along to stop suffering, to help, to bring a little relief, only to make things worse by begetting more and more dehumanization through its technological and psychosocial fixes. On the one hand, the knowledge begotten by anatomy and physiology was motivated by the desire to stave off death and to relieve suffering; the practices of the 1960s in keeping people alive with technological

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interventions yet without hope of meaningful living were an extreme expression of this motivation. On the other hand, the contemporary palliative care movement is a response of medicine to the suffering begotten by extreme care offered to those who are dying. Yet in medicine’s drive to alleviate the suffering caused by an over-technologized medicine, palliative care comes to attempt the control of death through discourses, demeaning the very idea that death might mean something, might frame the value of one’s life. Dead anatomy begets physiology; physiology begets technology; technology — the replacing of a dead organ by a dead machine — begets a life worse than death. An over-technologized medicine begets a biopsychosocial medicine; a biopsychosocial medicine begets a biopsychosociospiritual medicine; a biopsychosociospiritual medicine begets holistic, palliative care medicine; but the holistic care of the dying comes to look totalizing, indeed, totalitarian. The word palliate comes to English from the Latin word pallia¯re, which means “to mask or cloak, to mitigate.”39 Thus, today death is managed or controlled or cloaked through biomedical intervention, as well as a wide array of social, psychological, and even spiritual discourses. Do these practices prevent patients, their loved ones, their doctors, and even society at large from confronting death in its fundamental significance for human life? Is the drive to cloak death in technology and to master it in discourse merely covering the fact that death sits at the heart of medicine? And finally, is medicine not about the power of life and death? Thus, is medicine not also a form of politics? Medicine needs death. For in its various techniques, from autopsy and dissection to organ transplantation, modern medicine “needs” death in order to create its own realm of theory and practice, but this death is a different kind of death from the one that allows someone to create existential or personal meaning. As noted by Kaufman in her anthropological descriptions, by Foucault and Agamben in their philosophical treatises, and by medical practitioners every day in Western societies, the zone of indeterminacy, the no-man’s land between life and death, grows increasingly wider, and necessitates the decision of the one with the proper sovereignty to decide whether to live or die. Death is the radical other for Western society in general and medicine in particular, and as such it is our god. “Choose you this day whom ye will serve!”

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Conscious choice is the central aspect of being human for those of us living in the West, and it is the deciding feature of the good death. In this book, I shall attempt to unpack medical notions about death, notions that are embedded in contemporary medical practices and result from the coincidence of medicine’s metaphysical, epistemological, and even political commitments.

of  G oo D s  a n D p r a c t i c e s

Medicine is a good in Western society. Those of us who are engaged in the practices of the good of medicine — especially in light of the status that medicine has achieved — think of ourselves as practicing a good that is virtually unqualified. So, when critiques come, we, the practitioners of medicine, tend to have one of two responses: either outright dismissal of the criticism or a quick attempt to resolve the problem. What follows in this book is another critique of medicine, particularly in its mode of caring for the dying. By “the dying,” I mean those who are in the ICU and in palliative care. I have no doubt that there will be those who will dismiss my critique outright. As for the second group, those who hear the critique and accept it as, at least in part, accurate, they will no doubt attempt a quick remedy, one that fixes the problems that affect a broken medicine. Those remedies will range from a call for better scientific data in order to know better how to care for the dying, to a call for a good dose of humanism in order to solve the problem. The former will emphasize the science of medicine; the latter will emphasize the art of medicine. The former will say that medicine needs better science in order to become, once again, humane; the latter will call for a therapeutic course of humanistic education, a humanities pill to fix what ails us. Yet it seems to me that we have been attempting both fixes for so long that we do not even know where the problem lies. It is virtually impossible to think about how to solve any problem in medicine without our thinking becoming almost immediately mechanical and instrumental. We already live inside a way of thinking that prevents us from thinking differently; not that thinking differently is impossible, it is just difficult. If we are to prevent all practices in medicine from becoming thoughtless doing, we must once again turn to

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how we think about what it is that we do. In order to achieve this, however, we must, paradoxically perhaps, realize that all thinking is also a kind of doing. The strict line between theoria and praxis, so prominent in the West, and the strict division between subject and object are, in a way, false ones, but they continue to flourish in our practices. These lines (theory vs. practice, subject vs. object) sit at the very heart of the West, if we are to believe thinkers such as Nietzsche and Heidegger;40 or perhaps these lines are just an aberration of late Western Scholasticism, or are lines drawn at the Enlightenment.41 If we accept Foucault’s position — which does not preclude accepting any one of these possible readings on the history of Western thought — we know that there are various kinds of practices implicit in all theoretical endeavors, and at the same time there are implicit theoretical stances in all that we do. Thus, we must think, once again, about what it is that we do by examining critically what we do. Medicine as a discipline is mostly concerned with doing and with the effects it brings about in the world. Medicine concerns itself with how to pragmatically produce or cause those effects in the world. Or, as Carl Elliott points out, medicine collapses into an unthinking pragmatism,42 an inane “practice in order to be practical.”43 Medicine is a practice ordered toward and by its own practicality. Medical information is justified as medical knowledge if one can do something with it in the world. Medicine’s metaphysical stance, then, is a metaphysics of material and efficient causation, concerned with the empirical realm of matter, effects, and the rational working out of their causes for the purposes of finding ways to control the material of bodies; that is to say, medicine’s metaphysics of causation is one of material and efficient causation at the expense of final causes or purposes. Among Aristotle’s four causes, early modern science — including medical science — historically repudiated or, at the very least, minimized formal and final causation and elevated material and efficient causation. Efficient causality reigns supreme in all technological thinking, such that even matter comes to be thought of not so much as a cause, but as the stuff that stands in reserve of power, awaiting knowledge to mold it into what we desire it to be.44 On this view, matter — the body— has no integrity, except that it is driven by an automaticity and can be bent to our desires. At least since Bacon, it has been understood that knowledge is power gained to relieve

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the human condition.45 That is to say, true knowledge can do things with the world. The purpose of knowing — the end of knowing — is to bring about desired effects in a world of immanent cause and effect. Medicine gives no thought to its metaphysics; it might even deny having one. And it gives no thought to its practices, because medicine is about doing and not about thinking. For Western medicine, and perhaps for all of scientific and technological thinking, the important problem in the medical world is how to manipulate the body or the psyche in order to get the effects that we desire. Bodies have no purpose or meaning in themselves, except insofar as we direct those bodies according to our desires. In this sense Eric Krakauer has said that medicine is the standard-bearer of Western metaphysics.46 The world — the body— stands before us as a manipulable object, and all thinking about the world or the body becomes instrumental doing; thus, to do good we must manipulate the world and show our effects toward some measureable outcome. In this book, I shall claim that the practices surrounding the care of the dying in our time are built upon this metaphysics of efficient causation, and that this metaphysics became possible precisely because medicine’s epistemology became grounded on the dead body, understood as an ideal-type. After all, life is in flux, and it is difficult to make truth claims about matter in motion, about bodies in flux. Thus, life is no foundation upon which to build a true science of medicine. The processes of living prevent the possibility of true knowledge about the body. Moreover, in the dead body, in the stasis of death, one can find a firm ground on which to make truth claims. Taking the dead body as epistemologically normative has metaphysical and ethical import, for in doing so, one highlights certain notions of causation over others and deploys practices that shape, direct, and enforce what we call care. The dead body, as the normative body, begets practices that efficiently manipulate bodies and psyches toward the “good” death. I shall also argue that these practices of the care of the dying hide and mask their power and their force, even while they deploy that power and those forces. These forces both are possible and are deployed because of the implicit metaphysics already held by medicine; that is to say, medicine’s epistemology already holds the world and bodies to be objects that are primarily measureable, even before the measuring. The

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dead body is the measure of medicine, creating the sense that life is primarily matter ordered to efficiently move within space, both within the space of the body itself but also within the space of the body politic. The dead body as the normative body in medicine creates the conditions for the possibility of the deployment of a metaphysics of efficient causation, a metaphysics of power and control of bodies and psyches. In short, the practices of care of the dying — both ICU care and palliative care — betray the cold ground of their origins. I shall have to beg the reader’s patience, first as I accumulate evidence for this claim, and second because it is no small thing to entertain the idea that our practices, which are designed to stave off death or to ensure a good death, have dark origins and deploy subtle (and not so subtle) forms of violence. It is no easy thing to turn to medicine’s practices, which all along have been motivated by care and concern, and to acknowledge that the very structures of care and concern created to care for the dying (whether the person is in the ICU or the hospice) cloak death and, in so doing, betray a kind of coldness toward the dying. It will no doubt be hard for us to accept that our practices continue to repeat these violences — even in palliative care — precisely because there is something rotten at the heart of medicine. It is in this sense that medicine has become thoughtless: medicine is primarily about pragmatic doing and efficient control, ordered to utilitarian maximization and its own practicality. In short, medicine’s philosophies of life and death, its technologies of life, and its psychologies of death are founded first in an epistemological move to find a stable place to build its knowledge, namely, the dead body, and second in its deployment of a metaphysics of efficient causation for the mastery of living and dying bodies and psyches. Medicine embraced the metaphysics of the modern natural sciences.47 Thus, with the rise of modern medicine, death is pulled out of communal contexts with various mythological, narrative, and liturgical meanings in order to become the ground of medical knowledge, and out of that ground, medicine is able to construct its knowledge. Modern medicine is continually struggling to master death, only to have death return with a vengeance. Death is thus shrouded in technology, hidden in discourse, and finally cloaked in palliative care. And in its return, medicine tries more exhaustively to name it, to shape it, to control its

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uncontrollable features, only for it to flit away. In this sense, death is medicine’s other, an other at its very heart. To make the claim that medicine has become a social apparatus for the control of the dying, I shall first have to lay down some philosophical groundwork and declare my own methodological commitments, because, after all, there is no view from nowhere. I take up a thesis articulated by Foucault, which I expand. The thesis, which I have already touched on above, is that in medicine the dead body is the epistemologically normative body, and medicine’s metaphysics is one dominated by efficient causation — the animation of dead matter. While I stand in the Foucauldian tradition of inquiry (if such a thing can be claimed), I do so with significant differences. So, I am not merely naming my sources or giving an account of my use of Foucault. Moreover, it should be noted that Foucault is a master diagnostician, but he is less helpful with therapy. However, Foucault’s insight into the role of space and time, now understood as political space and historical time, in medicine and other disciplines is potent for understanding why contemporary medicine is the way that it is.

s t r u c t u r i n G  t h e  a r G um e nt

My first two chapters are primarily genealogical, that is, they critically examine the development of a medical philosophy of death. The first chapter is necessarily philosophical for several reasons. First, I disclose my philosophical and methodological stances, and I begin to unpack the philosophy that animates medicine. I take two notes from Michel Foucault: one is methodological, the other is a thesis. Foucault’s method is genealogical, a kind of historical project examining historical development in order to explain how we got to where we are. Foucault also calls his method archaeological in that he takes a good look around a particular historical moment in order to explain how different aspects of particular histories — of particular times — have different origins but work together to create the present. My method of engagement is both genealogical and archaeological; it deals with medicine’s history (time) and its politics (space). I explore political space and historical time, asking medicine how its practices came to be such that they betray its

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coldness in the face of death. I pick up a thesis that Foucault articulates in Birth of the Clinic, namely, that within the space of the dead body, the flux of matter in motion is frozen; time stands still. I show how this understanding of the dead body becomes an ideal-type, a representation laid over the living body. In chapter 2, I explore how the medical clinic matured. It seems clear that the science conducted especially within the laboratory, rather than the clinic, becomes the major site of innovation for medicine starting from the middle of the nineteenth century. Foucault notes that there is a tension in the clinic between those anatomists who would find scientific certainty in the dead body and those more clinically minded doctors who would see more certainty for medicine in the science of statistics. Given my thesis that the dead body is epistemologically normative for medicine, one might counter that this nonliving body is not what physiology studies, because physiology is about the living body. I explore the rise of physiology and statistical medicine and show the way in which they depend on an understanding of life as nonliving matter in motion. I also argue that the political space created by statistical theory gave medicine a platform to participate in the governance of the body politic. After all, as Foucault would claim, the task of good health is first a task of good government. I also explore how science must penetrate the body in order to know how to manipulate body and psyche, for their own good, no doubt, but also for the good of the body politic. In chapter 3, I become more archaeological, in looking carefully at what contemporary medicine has at its disposal for the care of the dying. I trace the movement of the physiological laboratory back into the clinic/hospital, and of physiological science, which understands life as the series of functions that resist death, into the ICUs. Medicine intervenes on the prior cause, forcing dying matter to stay alive, and in so doing it too often demeans the patient’s understanding of the meaning and the purpose of life. Life is the series of functions, and as long as the matter is in motion, there is life. We are left with the perception that patients in the ICU are living lives worse than death. In chapter 4, I explore medicine’s remedy to the problem of sustained mechanical life without hope of a good life. Because medicine understands life as function without purpose, then all that must be done

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to remedy the problem is to stop doctors from forcing technology on the dying; doctors must take their dictates from decisions made by patients. Surely, this reversal of power is good, but it does not get at the heart of the question of medical violence. Rather than explore the meaning and purpose of life, medicine’s response is to create the patient as the master of her own body. She must decide whether to embrace or to reject technology. Rather than addressing the very human questions of meaning and purpose, medicine simply changes who is in charge, who has the sovereignty to control life and death efficiently and effectively. This decision creates the space where euthanasia becomes a decision for the one in charge of his own subjectivity. Yet ensconcing physicianassisted death in the law only frames the decision for death as the most rational decision to be made by the sovereign. It is the individual’s ownmost decision, but only because it has been framed in that way by the social apparatus of medicine and law combined. Chapters 5 through 7 deal with the question of brain death. Once the technologies of life are able to keep the dying alive, medicine is faced with a question of what to do with those who cannot come off the machines but whose physiology continues to be healthy. This attitude toward life as mechanical function also opens the possibility that life could be sustained indefinitely if the machine of the body could be sustained. Dead organs can be replaced by living organs. In chapter 5, I trace how the idea of brain death is constructed. In chapter 6, I trace how the drive to transplant organs leads to a series of conundrums and absurdities in practice, where the living bodies of the dead become the source of life for the dying bodies of the living. I also trace how brain death is increasingly being questioned as the definition of death, such that some are calling for the abandonment of the dead donor rule, thereby opening a space where death is embraced for the good of the body politic in need of organs. In chapter 7, through the exploration of the cases of Terri Schiavo and Eluana Englaro, I explore how the abandonment of the dead donor rule moves life and death into the realm of decision. For political conservatives, bare life is deserving of the protections of the law even if the good life is not possible. For political liberals, the only lives deserving of protection are lives that can decide about the possibility of the good

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life. Abandoning life, either in physician-assisted death or in abandoning the lives of those in persistent vegetative states, becomes a decision framed in terms of politics. In chapter 8, I explore the biopsychosocial model of care, the rise of Elizabeth Kübler-Ross, and the introduction of psychological and sociological discourses into medical practice. This movement begins with a shift from the biomedical model of medicine to a biopsychosocial model. In this new model, medicine can be more sensitive to a person’s psychological and social contexts. Through the use of statistics, medicine creates assessments that give a scientific character to both psychology and sociology. Total care — of body, psyche, and social relations — can be managed because now they have achieved the status of science. Biopsychosocial medicine reaches its fruition in biopsychsociospiritual medicine, where spirituality is allowed back in, but now as assessed and measured. Each area — the biological, the psychological, the sociological, and the spiritual — has an expert, and each expert creates tools of assessment. These assessments are the means by which the expert creates and defines his area of expertise. In short, these experts deploy total(izing) care. In chapter 9, I trace the beginning of the modern hospice movement in the love and concern offered by a nurse and social worker, Cicely Saunders. I show how it mutated into palliative care, which claims to be “more than ‘tender loving care,’ a high level of sympathy, and time and inclination to sit by the bedside holding a patient’s hand.”48 Palliative care must achieve the level of a science, with instruments of assessment, in order to be true care. Palliative care extends the reach of the expert into the crevices of the patient’s psyche, into the fissures of his social relations, into the caverns of his religious life. It extends beyond the grave into the familial space left empty by the patient’s death. Medicine becomes at best totalizing, at worst totalitarian. In my final chapter, “Anticipating Life,” I turn to explore, haltingly, how medicine might be transformed. I approach, phenomenologically, the nature of suffering and the ways in which life can be understood only as flux, not as death. Life is in flux; it is by definition a suffering, an undergoing of change. What if, instead of elevating efficient and material causation in life, medicine understood that embodied life is also the embodiment of formal and final causes? What if, instead of seeing

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only the loss of function in those who are suffering and dying, it also could see that human beings are losing meaning and purpose? What if, instead of highlighting function, it paid attention to purpose? What if, instead of thinking of life as the series of functions that resist death, medicine searches for its origins in the call of the suffering other? What if that call could only be heard and understood, not through a myriad of exhaustive social, psychological, and spiritual assessments, but from within a community of others? If medicine’s practitioners will but think back to their reception of a primordial call, will they not find that it was the call of a suffering other, a friend, a mother, a father, a sister, or brother, who called on them for assistance? Were they not called to be physicians by a suffering other? Would medicine deploy its technologies so readily or carelessly if it understood life as embodied purpose? Would its science and its practices look different? What if medicine took seriously its origins in community? What if medicine understood that life is inherently communal, with forms and purposes and not just material function? Would its understanding of life and death, or better, living and dying, be different? For medicine to be other than it is, we must understand why it has become the way it is. My claim is that medicine has pulled the dead body out of community, stripped it of its communal significance, and found the ground of its knowledge in the dead, decontextualized, and ahistorical body. I shall argue that medicine has lost its way in the care of the dying — from ICU care to palliative care — because of how it understands death in the body.

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Chapter

1

Birthing the Clinic

As with any project that begins by taking up a thesis of Michel Foucault, one must first discuss Foucault himself. That is, I must give some account of how I understand Foucault’s work, particularly his work on medicine, psychiatry, and the social sciences. Yet placing Foucault is no small task. Foucault has occupied a questionable position as both historian1 and philosopher.2 Historians often reject him as a historian but are willing to entertain him as a philosopher; and philosophers often reject him as a philosopher but entertain his work as a historian. He has been considered a political philosopher,3 a theologian — or at least engaged in tasks that have engaged theologians4— and an enemy of hope.5 I embrace him as both a philosopher of history — where history becomes a philosophical category of analysis — and as a historian of philosophy— where philosophy is an endeavor to understand what animates very particular practices in very particular places at very particular times. Yet Foucault refused the manacle of historian of great ideas,6 and instead of writing histories of great ideas, he wrote the histories of the others of those great ideas. He wrote histories of thought about problems.7 He took for himself the moniker of historian of thought, or historian of problematizations.8 Hubert Dreyfus and Paul Rabinow present Foucault as both historical and philosophical; they think of Foucault as offering an interpreta28

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tive analytics. Foucault is analytic in the Kantian sense when he searches out the conditions for the possibility of unreason in History of Madness, of medicine in The Birth of the Clinic, and of life, language, and labor in The Order of Things; but he also searches out the sources and legitimate uses of our various types of knowledge.9 His work is interpretative in that it seeks a pragmatic reading of the coherence of our practices — practices in which our knowledge is instantiated.10 Gary Gutting, on the other hand, does not wish to look for easy ways to make Foucault’s work cohere. For instance, Gutting separates Foucault’s works into three distinct eras: (1) archaeology of discourse (including History of Madness, The Birth of the Clinic, The Order of Things, and The Archaeology of Knowledge); (2) genealogy of power relations (including Discipline and Punish and the first volume of The History of Sexuality); and (3) the problematization of ethics (including the second and third volumes of The History of Sexuality, namely, The Use of Pleasure and The Care of the Self ).11 Thus, it is difficult to embrace his methodology or take up a thesis from Foucault without first placing his work in some sort of context. In this chapter, I shall first give a brief interpretation of Foucault’s project, fully acknowledging that many interpreters of his various works would reject the possibility of a single Foucauldian project. However, Foucault is essential to my methodology as well as to the thesis of this volume. I shall attempt to give an account of how Foucault gained some of his insights, particularly on medicine, psychiatry, and the social sciences. I shall argue that Foucault describes the shifting ground for the conditions of possibility for medical practice. I shall further argue that these shifts are grounded in a shift in metaphysics. After briefly interpreting his Birth of the Clinic, I shall focus on one of Foucault’s insights, namely, that the dead body is epistemologically normative in medicine.

At  P l Ay  i n  K A n ti A n  Fi e l d s

According to the pseudonymous Maurice Florence, “If Foucault is indeed perfectly at home in the philosophical tradition, it is within the critical tradition of Kant, and his undertaking could be called A Critical History of Thought.”12 If we take Foucault at his word — for Foucault

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wrote this about himself as Maurice Florence — then we shall have to say that insofar as he is a philosopher, Foucault is Kantian. Kant articulated the a priori conditions for the possibility of knowledge, and Foucault is interested in understanding the a priori conditions of knowledge, particularly the knowledge generated by the human sciences, medicine, and psychiatry. Kant seeks those features of knowledge that exist prior to our experience of whatever occupies our attention. Those a priori features are the pure forms of intuition — space and time. As noted by Beatrice Han in her excellent treatment in Foucault’s Critical Project, Foucault needed to settle a problem presented by Kant, namely, the exact moment when the transcendental theme — the a priori of space and time — came to coincide with Kant’s study of anthropology. The concepts of subjects and objects, and space and time, have occupied much of Foucault’s work. Foucault’s secondary doctoral thesis of 1961, which was not published during his lifetime, was a commentary on Kant’s Anthropology from a Practical Point of View.13 This thesis was central in forming Foucault’s later questions, for this is precisely the point, early in Foucault’s studies, when he began to seek a relationship between Kant’s anthropology and Kant’s three Critiques of reason and judgment. In his Critiques Kant attempts to articulate the transcendental conditions for the possibility of knowledge, but in Kant’s Anthropology, Foucault argues, there is an ambivalence between the transcendental constituting subject and the already constituted object. Han states: “The object of the Anthropology would therefore be neither the ‘subject in itself’ of the Second Critique, nor the ‘pure I’ as studied in the first, but an ‘object-I’— also ‘subject’— in other words, man in his paradoxical identity as determined and determining.”14 This idea of the constituted subject and the constituting subject — the “empirico-transcendental doublet”— was more clearly articulated by Foucault in The Order of Things.15 So, from early in his career, Foucault was at play in the terrain mapped out by Kant. He was addressing the “crises” or “problematizations” created by Kant, problematizations that manifest themselves in the practices of psychiatry, medicine, and other of the social sciences. These problems will come more fully into relief in this work. In Foucault’s Introduction to Kant’s Anthropology, we even begin to see some of the problems associated with genealogical studies. He notes

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that Kant’s Anthropology developed over a thirty-year period and bemoans the fact that no earlier versions of the manuscript, as it developed, are available.16 We can see the outlines of Foucault’s method when he states, “it is impossible to make a clear distinction between the genetic perspective and the structural method in analysis of [Kant’s Anthropology].”17 In other words, in this very early work Foucault concerns himself not only with the subject that becomes its own object of investigation, creating the Kantian problematic, but also with his own method of discovering the conditions of possibility for this problem to emerge as a problem. Here, we see in a very cursory form the outlines of the intersections of Foucault’s genealogical (genetic perspective) and archaeological (structural method) studies. Foucault has a project that plays itself out within a Kantian tradition, precisely because he is concerned with subjects and objects, with what constitutes certain kinds of objects and subjects, and with the conditions of possibility for our present situation. Han notes that if Foucault has a project, there needs to be an organizing question. That question is: How is it possible to have true knowledge, and what are the necessary conditions of that knowledge?18 This question animates Foucault’s work and is an essentially Kantian one. Furthermore, Foucault attempts to solve the problem of subjectivity while avoiding the transcendental reduction. So the organizing question is about the conditions of possibility for true knowledge; but to address that question, Foucault keeps butting up against questions about subjects, objects, and their constitution, but now not in terms of the pure forms of intuition — space and time — and categories of knowledge, but in terms of historical time and political space and the types of knowledges that are instantiated in our practices. In an interview, Foucault comments on his interest in the history of thought, which is distinct from the history of ideas (by which he means the analysis of systems of representation), and which is also distinct from the history of mentalities (by which he means the analysis of attitudes and types of action).19 A history of thought is, instead, a history of “what allows one to step back from this way of acting or reacting, to present it to oneself as an object of thought and question it as to its meaning, its conditions, and its goals.”20 The step back is the critical step, a step back to get a good look at a problem and why the problem presents itself in these ways.

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In the same interview, Foucault specifically refers to his previous works from all the different periods.21 He notes that in the History of Madness, he is documenting problems presented to what would become psychiatry. William Tuke and Philippe Pinel, he states, solve what appears to be the same problem in different ways. He observes that in Discipline and Punish he is examining eighteenth-century penal practices and how a whole group of solutions emerged to solve the difficulties encountered in the creation of prisons and penal systems in the second half of that century.22 He even cites his later work in the history of sexuality, in which he documents the different solutions proposed by different Hellenistic schools of thought on traditional sexuality.23 Thus, in retrospect, Foucault sees a critical coherency in his project. In other words, Foucault’s works, in his own view, present a kind of history of the present, in which he identifies a problem in our own time — for example, madness, penal practices, or sexuality — and asks how we got to this point. Our present problems are a consequence of how the problems were addressed in the past, which, in turn, depended upon how these problems were perceived as problems to begin with. Thus, the work of the history of thought is to discover that at the center of the different solutions to problems is “the general form of problematization that has made them [these particular solutions] possible.”24 In order to identify issues faced by the present, we must first take a good look around at how the problems present themselves, based on the solutions documented in history. The solutions to problems emerge in particular historical and political circumstances and are instantiated in practices. That is to say, our various types of knowledge and our practices result from particular histories and particular political spaces.

t im e  A n d s PA C e

We can see, therefore, that Foucault understands “man”— his term in The Order of Things — as not just some sort of object awaiting discovery by scientists. The study of madness or life or language — or, for my project, death — is shaped not only by history but also by the coincidence of factors in the surrounding space, each having their own historical development. Certainly, there are continuities in history, but there are

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also discontinuities. Moreover, the coincidence of continuities and discontinuities forms the conditions for the possibility for the truth claims, whether made by scientists or by doctors or by social scientists. Foucault is looking at the powers of constitution and at what is constituted. He is concerned with objects and subjects, and with the a priori conditions necessary for knowledge. He is concerned with marking out a zone of freedom, all the while attempting to historicize Kant’s transcendentals. He is also concerned with space and time, now political space and historical time, especially in Birth of the Clinic. Edward Casey and Charles Scott both draw attention to the importance of space in Foucault’s Birth of the Clinic, and indeed, I would argue, in the whole of his work.25 For Heidegger, time is not just the tick-tick-tick of the clock but the historically constituted running toward death; similarly, for Foucault, space is never merely three noncontextual dimensions. The philosophies of time and space of both Heidegger and Foucault are linked back to Kant’s pure forms of intuition: space and time.26 As Kant notes in the Critique of Pure Reason, “This schematism of our understanding with regard to appearances and their mere form is a hidden art in the depths of the human soul, whose true operations we can divine from nature and lay unveiled before our eyes only with difficulty.”27 Moreover, “The schemata are therefore nothing but a priori time-determinations in accordance with rules, and these concern, according to the categories, the time-series, the content of time, the order of time, and finally the sum total of time in regard to all possible objects.”28 Time is the form of intuition that determines the imagination — the “depths of the human soul.”29 Out of this form of the intuition — namely, time — Kant holds that the time-series, the order of time, and other objective measures of time are possible, and that time is the form of intuition of the interior life of the mind, the “depths of the soul.”30 This point about the centrality of the schematism and the “depths of the human soul” is specifically noted by Heidegger in Being and Time — it leads to a question and problem from which Kant shrinks, according to Heidegger.31 “As pure intuition, time is that which furnishes an aspect prior to all experience,” as Heidegger argues against Kant’s doctrine of time.32 Time, he maintains, is operative for all categorizations of ordinary and scientific time and for the appearance of all objects, but

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not as pure intuition, not as the pure form. Time, for Heidegger, is not univocal. There are a myriad of times that structure our ways of experiencing those things that appear for us. One’s time in history is a kind of time into which one is thrown and which structures the kinds of projects in which one engages. Heidegger claims that time can be experienced but not represented, while death can be represented to oneself in the death of the other, but not experienced in itself. Thus, death, as the end of one’s time, also structures one’s experience, allowing certain kinds of objects or things or projects to come into relief. Hence, all forms of objective marking of time rest on the existential running into the future, toward death, toward the end of time. Death-time structures our experiences, the objects that emerge for us, and the projects in which we are engaged. Thus, like Kant with his “schemata” of the understanding, Heidegger grants a priority to time over subjects, objects, and space, even while time takes on a very different kind of meaning for Heidegger than it had for Kant. Foucault takes space as an organizing principle, especially in his analysis of the rise of modern medicine; and, like Heidegger in his examination of time, Foucault is not exploring space as a pure form of the intuition; space is not an abstract a priori. Contrary to Kant and Heidegger, Foucault holds that in medicine, as well as in other Enlightenment projects, space has priority over time. By this, I mean that he notices the priority of space over time in the various disciplines — from psychology to medicine to other human sciences — especially as demonstrated in the elaborate tables created for the encyclopedic classification of disease33 and in the biological classification schemes in which living organisms are classified by genus and species.34 Thus, what something is depends on how it is classified within the space of the table. Space is about organizing, about placing living beings into classificatory tables — precisely the purpose, for example, of the Diagnostic and Statistical Manual of Mental Disorders for modern psychiatry.35 This person is a depressive, that person is a schizophrenic, and another person is a homosexual — each term ascribing something essential, some ontological characteristic that defines that person, qua diagnostic category. Space — the space of the table — thus organizes knowledge and provides a kind of power over those things or people who fall within some category in the table. As documented in Birth of the Clinic, there are other

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spaces in medicine, too, including the political space of society and of the clinic and the space of the interior of the patient’s body.

s o lv i n g  K A n t ’s  Pr o B l e m s

Foucault’s History of Madness is a description of the way in which “madness” fell under the control of psychiatry. Yet it is not primarily an examination of the birth of the discipline of psychiatry, but rather takes this topic as an occasion to reflect on the notion of reason and its other, unreason. It attempts to capture the fluid movement of an unreasonable object — madness, or the person suffering madness — in terms of a reasonable subject whose position of power stands in relation to the power of medicine and the state. Reason and unreason are defined one against the other. But reason, that Nietzschean mask for the will to power, has the power to define its object. Reason, with its fixed power, comes to fix the fluidity of unreason, to define it as an object. Thus, History of Madness is a work on reason and power as the conditions of possibility for a new object — unreasonableness/madness/mental illness — to appear on the scene. It examines the interplay of the Apollonian and the Dionysian elements in the post-Enlightenment landscape, its purpose being to show how objects are produced by a supposedly static reason, with the quintessential object being the other of reason, namely, unreason. Birth of the Clinic is an examination of the birth of the discipline of medicine. Yet it is also an examination of the discontinuities of history,36 where ideas and practices with different histories are joined together. It is an occasion to see, once again, the excess that language betrays and begets but oddly also delimits.37 It is the occasion to see how medical practice missed the idea that the gap between signifiers and the signified creates the need to endlessly comment upon commentary,38 and how medical practice conceived signs as speaking their truth without remainder or excess — no interpretation being necessary.39 In another sense, it is also a reflection on the task of the historian and on the intractability of writing and interpreting. Foucault’s projects are broad and at the same time very specific. His work operates on many different levels, and as such his works are philosophical. He shows how the

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subject — the doctor — is produced in a field of political circumstances, and how the good citizen becomes the healthy citizen in Republican France of the eighteenth century. The Order of Things is Foucault’s foray into the human sciences, in which he examines life, labor, and language — biology, economics, and linguistics. Here, he looks at the oddities of man who becomes his own object, that is to say, when the empirical subject becomes the object to the transcendental subject. This problem of the empirico-transcendental doublet self, the subject-self that comes to know itself as object — in other words, the self that is both constituting and constituted — is not solved by Foucault except in the idea of some sort of mystical disappearance of man-the-subject, which will be erased “like a face drawn in the sand at the edge of the sea.”40 The Archaeology of Knowledge is an attempt to find a new way into the problematics of subjects and objects, of the historical and political constitution of subjects and objects. In this work on methodology, Foucault expounds on an insight gained in Birth of the Clinic, namely, that one does not have to conduct deep genealogical studies in order to see how perspectives change. Where the genealogist digs deeply into the past — into time — looking for hidden continuities, the archaeologist takes a good look around in a very narrow time-period. The genealogist looks for continuities; the archaeologist sees discontinuities. The genealogist sees how old things shape new things. The archaeologist sees how new things appear on the scene because of the immediate conditions in that very narrow time-period. The genealogist is more concerned with time; the archaeologist is more concerned with space. New objects emerge not only because they are begotten by the past, but also because of the space within which they emerge and grow. Discipline and Punish returns to man as the subject, but now not the self-constituting subject. Foucault examines the prisoner, that being who is subjected to the forces of surveillance, and the conformity in the bodies of prisoners to the will of those in power that is produced by surveillance. Discipline and Punish, then, is about the production of subjects in the sense of the subjected. Foucault notes that prisons and judges embrace a therapeutic model of incarceration, in which bodies and minds are normalized and reconstituted so that they can return to society. The power inevitably becomes internalized by those subjected

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to the categories created by those in power. Foucault further studies how those in power are informed by the psychological and sociological disciplines. While power no longer manifests itself in the direct subjugation of the body — as in the graphic depiction of the drawing and quartering of a prisoner at the beginning of Discipline and Punish — those in power still control bodies through more subtle means. Thus, Discipline and Punish serves as the “historical background to various studies of power of normalization and the formation of knowledge in modern society.”41 Power and knowledge go hand in hand. Foucault’s interest in the relation between power/knowledge is born here. Through the internalization and habituation of dispersed power/knowledge, the subject is created. Certainly there are oppressive forces at work that subjugate the body of the criminal, himself a creation of society, but Foucault also begins to recognize that power/knowledge is not only oppressive but at the same time opens up new possibilities, new vitalities, and new freedoms. Like Kant, whose ethics attempts to carve out a space for human freedom in the face of determinative heteronymous forces, Foucault is trying to find a place for human freedom in a world of historical and political determinism. He attempts to find a little freedom for the self somewhere between the determining and determined subject. As pointed out by Jon Simons, power in Foucault’s later works does not so much mean oppression as it means that which forms the conditions for the possibilities that shape our forms of life. We oscillate between the unbearable heaviness of being constituted by those powers that would rigidly oppress us and the unbearable lightness of being if those powers are insufficiently structured.42 As noted by Han, Foucault is trying to find freedom without an appeal to the transcendental.43 In the later Foucault, however, we find that the self either accepts or resists the power structures into which she is thrown, and it is this self-creating that defines authentic subjectivity for Foucault. It is here, between the lightness and heaviness of being, that Foucault tries to carve out spaces of freedom for self-creation, the freedom of becoming. Yet those spaces can only be carved out from the forces that shape and mold the uses of the body and the psyche. That is to say, those forces, those powers, are not merely social or political powers instantiated in the state, but are also the powers that shape the forms of life itself,

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such as medicine, psychiatry, and other human sciences. These disciplinary powers are powers of expertise, that is, powers of knowledge. Thus, in part, Foucault’s point is that knowledge is not discovered so much as it is created. The powerful forces of politics are not merely placed in the hands of the sovereign; they also exist in those forces that both restrain and sustain our forms of life. In this sense, Foucault begins to talk about a biopolitics. Foucault, then, is solving certain problems and incoherencies of Kantianism, particularly involving supposedly stable objects, such as madness (History of Madness); notions of the subject, such as the doctor (The Birth of the Clinic); and the subject that becomes its own object, such as the empirico-transcendetal doublet (The Order of Things). Like Kant, he is searching for the conditions of possibility for the kinds of practices that are central to the modern world. These conditions of possibility are no longer the forms of the intuition — space and time — but are the conditions of historical time and political space that produce both subjects and objects. In Birth of the Clinic, Foucault addresses the political space in which patient (object) and doctor (subject) encounter one another and the ways in which different spaces shape both the doctor and what the doctor sees.

F or m s A n d n At u r e s  i n  B i rt h o f t h e Clin iC

Birth of the Clinic is Foucault’s first work to explore the ways in which medicine’s objects of inquiry shifted, due to a shift in the political space in which subject and object encountered one another. The coming together of different spaces created the clinic. Each of the spaces described in Birth of the Clinic has a separate genealogy, and each arrives on the scene to constitute the clinic during a relatively brief period in French history, from about 1760 to 1830.44 Birth of the Clinic is an archaeology because it takes this short period in time, when ideas with different histories came together in the political space of the French Revolution and its aftermath, and cuts transversely through that period to see how the little space of the clinic came into existence. Foucault observes that between the publication of François Boissier de Sauvages’ Nosologie of 1761 and Philippe Pinel’s Nosographie

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of 1798, medicine took disease as its primary object.45 That is not to say that the practitioners of medicine failed to take the patient into account, but rather to say that they took disease to be the object proper to medicine. Foucault refers to this philosophy of medicine as the medicine of forms, or the medicine of essences. Here, “form” should be understood in a philosophical sense, but not in a strictly Platonic sense. Form, by this time, had come to mean part of the formal arrangement of disease. In other words, the formal arrangement — that is, the table of diseases — would allow the practitioner to compare the symptoms to the table of diseases and name the particular disease of the particular patient. However, this formal arrangement came to be reified; it was thought of as the unmasking of a supra-real truth hidden within the chaos of reality.46 The disease’s form came to be thought of as existing outside of the patient’s body. It was at play in the patient’s body, but the patient’s body itself, his age, the set of circumstances within which he lived, and the constitution of his body were mere accidents, in the philosophical sense, to the formal essence of the disease.47 Foucault claims that these forms existed in the conceptual space — the formal arrangement — of medical knowledge. They were defined independently of the body. For example, inflammation in the lung and inflammation of the knee were considered much closer together than their sheer distance in physical or anatomical space would imply. Pneumonitis and arthritis were considered very close to one another because they share the same form, the same conceptual space in the table of inflammatory diseases. The form of similarity uncovered the rational order of the disease.48 The formal body of a disease mapped rather easily onto the surface of the body of the patient.49 Medical practice, then, was a practice of mapping the form of disease onto the body’s surface. Thus, Foucault claims that the three-dimensional space of the body was not of primary importance to this kind of medicine; rather, time was central to this understanding of disease, because the disease made itself known through a serial revelation of surface manifestations.50 Foucault also notes that on this philosophy of medicine, “the order of disease is simply a ‘carbon copy’ of the world of life.”51 Thus, just as a botanist might have said that a particular tree is of a certain genus because it has a certain root, branch, and leaf structure, so the medical doctor would have said that certain classes of diseases were of similar

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types because they shared a similar set of surface symptoms and signs, even though anatomically they were not related. On this version of medicine, diseases occupied a place in nature, just as trees exist in nature, and thus, diseases should be diagnosed and treated within their particular natural habitats. Hence they were best diagnosed and treated — in this formal medicine — within the natural space of man, namely, the family. Contrary to the way in which medicine is practiced today, people thought that hospital medicine disrupted the possibility of diagnosis and resulted in the failure of treatment, precisely because the patient and his disease were not in their natural place.52 In short, the primary space of disease, on Foucault’s interpretation, was the same supra-real space of the formal arrangement of knowledge. Disease is set up according to what Catherine Pickstock calls an epistemological circuit, in that “knowledge is based entirely on objects, whose ‘being’ does not exceed the extent to which they are known.”53 The actual disease in the world was defined by the place it held in the formal arrangement of diseases and did not exceed the extent to which it was known. The truth of disease existed in the formal representation mapped onto the actual body. In addition to this formal space of medicine, there was a secondary space, according to Foucault, though still not the three-dimensional space of the body.54 The space of disease and the space of the real body slip away from one another. What starts out as inflammation of the knee might move to become inflammation of the lung.55 “What communicates the essential ‘body’ of the disease to the real body of the patient are not, therefore, the points of localization, nor the effects of duration, but, rather, the quality.”56 So, there was the primary formal space of all forms of inflammation, but there was a secondary space where body and form meet. Still, this secondary space is not yet the space of a body. Instead, for example, “the brains of maniacs are light, dry, and friable because mania is a lively, hot, explosive disease.”57 The form of the disease — mania — meets the body in a qualitative space; the brain is light, dry, and friable because the form of mania is lively, hot, and explosive. Thus, in the medicine of forms, the connecting space of body and disease consists of the analogous qualities. Tertiary spatialization occurred in the social space within which the disease manifests itself. While today we might say that the table of forms

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was socially constructed, in the latter part of the eighteenth century, the tables represented supra-real realities. Just as diseases made themselves known in their manifest qualities in the body, so diseases made themselves known in various social bodies according to their natures.58 Certain diseases by their formal nature never made themselves known in certain areas of the world or seasons of the year. Diseases, too, had specific times and places. As already noted, hospitals were considered artificial spaces. Thus, the patient was better kept with the family for diagnosis, treatment, and cure because the social space of the home was the natural place of disease and healing. In fact, disease led to poverty if the patient was not cared for by family members, whose care was free and who might take over the work of the patient. The tertiary space of the medicine of forms was the natural and social space of human beings. This tertiary space opened up the possibility of state intervention — especially after the French Revolution — to mandate good medicine, to shape man’s natural habitat, and to ensure that disease was placed within its proper natural and social space for diagnosis and treatment. Thus, Foucault claims, a new medicine became possible, one where the social dimension became all-important, and where good politics led to good health, or put differently, where the good citizen was a healthy citizen.59 In essence, there was an ever so slight shift in the medicine of forms, which allowed for this tertiary space; and it was this tertiary space that took on new importance at the time of the Revolution. With tertiary spatialization, the concerns of medicine began to shift away from the body of the disease — the proper object of formal medicine — toward the realm of the body politic. Foucault notes that during the mid-1700s, both place and time begin to be described or referenced in terms of a disease. There is “Marseilles 1721” or “Rouen 1769,” for example, referring to illnesses affecting multiple people in these cities in the same year.60 With tertiary spatialization, disease becomes understood in terms of epidemics.61 Space and time — for example, Rouen and 1769— come to constitute the conditions for the possibility of the disease to appear. This shift in focus gave rise to a very nascent concept of public health, a health that the state could manage and promote. So, Foucault claims, the most politically important space for the emergence of the clinic shifted from the abstract space of the forms of disease — disease essences — to the political space of society.

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re v o l u t i o n s  A n d  C o ns t i t u ti o ns  i n m ediC in e

In the latter part of the eighteenth century, this medicine of tertiary space — a medicine focused on epidemics — began to oppose itself to the medicine of forms. When, in 1776, the French government created the Société Royale de Médecine for the study of epidemics, the medicine of forms remained embedded in the faculties of medicine. In time, the Société increased in power and placed the faculties of medicine under its watchful eye.62 The resulting conflict between the Société and the faculties resulted in the Société gaining jurisdiction over everything from the disposal of corpses to healthy housing.63 The Société also logged detailed descriptions of every epidemic, and these served as a new repository of knowledge. In addition, the Société came to regulate not only the faculties but the practice of medicine throughout France. Thus, with the Société we see the beginnings of public health in France and the rise of statistical medicine — what Pierre Charles Alexandre Louis would call the numerical method64 — and this shift changed what counted as medical knowledge. In Foucault’s words, The locus in which knowledge is formed is no longer the pathological garden where God distributed the species, but a generalized medical consciousness, diffused in space and time, open and mobile, linked to each individual existence, as well as the collective life of the nation, ever alert to the endless domain in which illness betrays, in its various aspects, its great, solid form.65 Thus, the space of the state came to constitute the ground of medical knowledge, the proper domain of medical research, and eventually the control of both disease and health; that is to say, medical dominion came to coincide with space of the state. At the same time, according to Foucault, a belief arose that good government could create the social conditions proper to man, thus rendering disease rare. This reached its fruition in the French Revolution. “The first task of the doctor is therefore political: the struggle against disease must begin with a war against bad government.”66 Yet this political move, of regarding the bodies of men as part of a larger body politic, focused greater attention on the particular bodies of particular

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men. The doctor became, in this context, the “priest of the body.”67 It would fall to the doctors “to punctuate work with festivals, to exalt calm emotions, to watch over what was read in books and seen in theatres, to see that marriages were made not out of self-interest or because of a passing infatuation, but were based on the only lasting condition of happiness, namely, their benefit to the state.”68 Thus, medicine would shift from being about forms and diseases to being about the health of bodies and of the body politic. The constitution of the body politic refers both to the constitution of the polis and to the constitution of the body of an individual. Foucault later pointed out that this tertiary spatialization also took place outside France. In Britain a similar shift occurred, particularly with the rise of Francis Galton’s statistical medicine in the latter part of the nineteenth century, and culminated in the National Health Service.69 The modern idea of evidence-based medicine is an attempt to obtain statistically well-grounded reasons for acting, but it still remains, not a medicine of individuals (despite its claims), but a medicine of populations dispersed in space. Foucault eventually named these forces at work in society “biopolitics,” in which life itself is ruled and conditioned, not only in the sense of a power that oppresses by naming and normalizing life, but also in the sense of creating the possibility of new vitalities and new freedoms for citizens.70 The move to a political medicine did not happen overnight, nor was the change complete. It can be traced through Louis’s idea of médecine d’observation to today’s evidence-based medicine.71 The medicine of forms remained in the faculties of universities and was thought of as theoretical medicine; this medicine was belittled by the Société Royale de Médecine as so much metaphysical speculation. It persisted — in a new way — in the physiological medicine of Claude Bernard and others who attempted to work out theories of law-governed physiology. The tension remained between the theoretical stance taken by the universities and the practical realm of the politically aware practitioners of medicine.72 Still, according to Foucault, what these two different formulations of disease share is a gaze that medicine directs toward the body of the individual patient, and also a larger social gaze measuring the health of the body politic. Where the older medicine of forms gazes upon the surface of the body of the patient in order to read and interpret the form

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or essence of the disease beneath the surface, the newer social medicine gazes upon the body politic, identifying not only the disease but the political and social conditions — that is to say, the “natural” conditions — of its possibility.

t he  s h i F ti n g  s PA C e s  oF  m e di Ci ne

Given the tension between the older medicine of forms and the newer medicine of epidemics, it was increasingly difficult for those trained in each camp to claim supremacy. This allowed for an even newer type of medicine to appear — the medicine of the clinic. Foucault notes that this newer medicine had to construct a history for itself; it had to make itself appear ancient in order for the patient’s bedside to become the legitimate organizing space of medicine. It fabricated a history in which the ancient medicine of Hippocrates took place at the bedside and not in the space of forms or even the space of the polis.73 The purpose of creating this story was to displace both the medicine of forms and the medicine of political space and time. Thus, in the lore of the clinic, the bedside had always been the stable space for a medical knowledge that was universal and unchanging. The space of the bedside, that is to say, the clinic, became the stable, unchanging constant — medicine’s a priori — in the interaction of the doctor and patient. “In the non-variable of the clinic, medicine . . . had bound truth and time together.”74 In the space of the clinic, the theories of medicine that varied from historical epoch to historical epoch no longer mattered. At the bedside, no theory of forms would occlude the pure gaze of the doctor. The entire story went something like this: The new and liberated medicine was more like that of the ancient Greeks than like medieval medicine; for medieval medicine played itself out in the darkness created by theoretical, metaphysical, and scholastic systems.75 Ancient medicine knew the truths about the patient’s bedside, as the place where true knowledge about disease could be uncovered. Medicine went wrong, so the story ran, when medicine began to participate in the great metaphysical schemes of forms, essences, telei, and other notions of speculative philosophy. These schemes and systems, after all, were infected by the metaphysical darkness of medieval Europe.76

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Foucault documents several attempts across Europe from the eighteenth century through the early nineteenth century in which medicine was gradually reorganized on the new model of the clinic. Of particular importance was the way in which medical apprenticeship changed. In the older medicine, a student would study at a university under the faculty of medicine and learn the medicine of forms and its theories. Then the student would apprentice with a single practitioner for a number of years. With the rise of the clinic, Foucault claims, medical training became more focused on an experience in which teaching and patient care went together, hand in glove. With the shift from the medicine of forms to the medicine of the clinic, the space at the patient’s bedside was the joining together of seeing and knowing (le voir et le savoir) and their relationship to saying.77 One is protected from error if one “sees” in the space of the patient’s bedside, not only because the clinic was free from metaphysical speculation, but also because one would see the disease with a master.78 The clinic was the space where master and pupil together encountered the patient and together unmasked disease with language.79 “A way of teaching and saying became a way of learning and seeing.”80 The new medicine of the clinic was not immune from the politics of the day. During the French Revolution, Foucault claims, several features of the medical and political spheres lined up in such a way as to create fertile soil for the growth of the clinic. Aligned with a fear of metaphysics was the belief that disease is best left in its natural habitat of the home and not taken to the artificial, disease-worsening spaces of hospitals. Hospitals, as part of the church’s system of providing care of body and soul to the poor, to orphans, to strangers, to travelers, and to the sick, became objects of suspicion to revolutionary zealots, who regarded them as the remnant of the old, antidemocratic political establishment. As such, the hospitals were shut down and the hospital foundations were nationalized, turning out the poor and sick into the streets. Moreover, with the increased numbers of wounded soldiers and now with empty hospitals, hospital buildings became the locus of treatment of soldiers.81 This move would prove disastrous, as the situation worsened when disease did not improve in its “natural” habitat. This destabilized situation allowed for the clinic to fill the vacuum left in medical care.

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The idea of the clinic as the new space for treatment and education gained political ground when the care of the sick had to be reorganized, following the nationalization of hospital foundations. New laws for medical education were proposed and passed, which stipulated that students should “read little, see much, do much.”82 Education, which had been removed from the auspices of the university faculties, and patient care, which had been taken away from the old organization of the hospitals, now coincided in the clinic. Here, the poor would be cared for, students educated, and well-trained doctors would be plenteous. Yet, Foucault asks, is this new constitution of medicine really better? Has it truly made the experience of the patient better? He asks: “to look in order to know, to show in order to teach, is not this a tacit form of violence, all the more abusive for its silence, upon a sick body that demands to be comforted, not displayed? Can pain be a spectacle?”83 In the older medicine, persons had been subjected to the ravages of disease. Now, persons were subjected to a new medical gaze, which, Foucault argues, is an act of violence against the bodies of patients. Foucault’s claim is that medicine’s “advances” consisted not so much in becoming enlightened through science, as in becoming more enlightened in ways of subjecting the bodies of the sick within the space of the clinic. It was not so much that medicine found new objects, new diseases, and new mechanisms of physiology, but that the space of disease had changed, altering the experience of the observer. Put differently, subject and object per se did not change, but the space in which the subject and object were engaged had changed, and the engagement was mediated differently through the gaze.84 Thus, the apriority of space — the political space of the clinic — changed the experience of the observer and the observer’s experience of the observed. That difference was the birth of a new kind of medicine. The medical gaze was the gaze standing in the new space, institutionalized and made powerful along the lines of a more liberal government — thus, better medicine built upon better government. The clinic was a diffuse space because any tutor or any pupil could enter that space and the same thing would come into focus for whoever stood in the position of the subject. If the same patient were placed in another clinic on the other side of France, and with a different student and a different master, the same disease would come into relief for them. All physicians would deploy the same gaze.

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t he  i m P o rtAn C e  o F  h i s t ory  An d ti me

Chapter 6 of Foucault’s Birth of the Clinic is a rather Heideggerian chapter in its focus on language and time.85 Foucault claims that early in the eighteenth century, under the old medicine of forms, the two different notions of symptom and sign were distinguished temporally. The symptom was closest to the essence of the disease and would make itself known at first without a sign. Then, in time, the sign of the disease would emerge. Because the sign was temporally later, it was thought to be the prognostic of what would happen, of the patient’s future. This understanding of symptom and sign changed somewhat in the newer medicine of the clinic, a change that persists even today. We refer to the symptom as largely subjective, as reflected in the patient’s attempts to put into words the course of the illness. The symptom is shrouded and hidden in subjectivity. The sign is purer, in contemporary medicine; it is what is observed by the physician, by the trained eye. The sign indicates the disease because it is objective and true. The sign is fixed in the body, and it has an origin, the place where it is seen and begins. It is read in its truth by the knowledgeable practitioner and captured in an exhaustive clinical description. Thus, in the newer medicine of the clinic, there would be less uncertainty in interpretation, for there was no remainder, no excess that escaped the language of the clinic. The subjectivity of symptom gave way to the more certain revelation of the sign, observed and described exhaustively by the clinician. Foucault claims that according to the ideology of the clinic, the language of the clinic allowed the truth of the sign to communicate the truth of the disease. The clinic came to operate clearly on the relationship of the signifier to the signified, but in a way dissimilar to that of other languages, where there is always a remainder, an excess of meaning that must be interpreted. In linguistic studies, any language, written or spoken, requires interpretation. Yet in the language of the clinic, description is supposed to capture more fully the real disease, and no interpretation is required. The language of the clinic sees deeply into the essence of the disease and says what it sees. Everything is present — both in space and time — to the gaze of master and pupil, working together, and is made transparent by the shared language of the clinic. “The doctor’s discursive, reflective perception

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and the philosopher’s discursive reflexion on perception come together in a figure of exact superposition, since the world is for them the analogue of language.”86 The world is the analogue of language. The physician now sees revealed in language both the origin of the disease and its ends, its prognosis. With the shared and exhaustive language of the clinic, master and pupil clearly see the future, the terminus of disease, even to the end of life. The language of the clinic makes manifest the disease. Space and time became much closer together in the descriptive language of the clinic. Foucault states, The prolix discourses of systems must be interrupted: “All theory is always silent or vanishes at the patient’s bedside”; and the suggestions of the imagination — which anticipate what one perceives, find illusory relations, and give voice to what is inaccessible to the sense — must be reduced: “How rare is the accomplished observer who knows how to await, in the silence of the imagination, in the calm of the mind, and before forming his judgment, the relation of a sense actually being exercised!”87 Observation allows for a descriptive language to emerge. But the language is a language already possessed by the master, and this language coaxes the disease into relief and truly manifests disease. Thus, the belief of those practicing in the new clinic is that no theory intervenes; the essence of the disease is captured in the seeing and saying of master and pupil. Students must give careful attention to detail and to describing completely what is seen. A picture in words thus emerges, entirely faithful to the appearance that the object makes in the clinic.88 The space of the clinic is the neutral space that allows one to see the truth of the disease. It is the view from nowhere.89 Thus, there was born in the clinic a new hope for both practice and knowledge. “One now sees the visible only because one knows the language; things are offered to him who has penetrated the closed world of words.”90 Those initiated into the language of the clinic, without being present at a diagnosis and through only hearing the clinical description, can “see without seeing.”91 For the new clinical medicine, Foucault concludes, “all that is visible is expressible, and that it is wholly visible

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because it is wholly expressible.”92 Thus, with the language that sees and the gaze that speaks, Foucault claims, a more sure and firm ground was laid for new knowledge. Quoting Jean Baptiste Bouillaud, he states, “The medical clinic may be regarded either as a science or as a way of teaching medicine.”93 Seeing the diseased body and saying what one sees establish a sure foundation for a scientific medicine. This belief that the visible could be truly spoken in medicine and that the truly spoken could reveal the true disease to the initiated was part of the epistemological mythology of the new medicine. Medicine wedded itself to nominalism in that, first, it criticized the substantial reality of abstract general being, or essences, and second, it believed that the being of disease is of a linguistic type.94 The new medicine of the clinic operated along the lines that observations are to diseases as letters are to sentences.95 The master-clinician merely reads what is already there on the surface of the body, along with the pupils, who, in learning to read in the same way, learn to cast the gaze for themselves.

A nA ly si s  An d s PA C e

It would take about forty years of development of the clinic, as Foucault points out, before the study of anatomy would be embraced. As strange as it sounds to us, Foucault claims that the resistance to pathological anatomy did not come from the church or from a social and moral prohibition against dissection of the dead body in the late eighteenth and early nineteenth centuries. In fact, resistance to dissection came from medicine itself, and indeed from the newly formed clinic. In the mid to late eighteenth century, pathological anatomy and the clinic were opposed to one another. Anatomic dissection had been accepted; Giovanni Battista Morgagni published his work on anatomy in 1760 but was operating in the tradition of Antonio Maria Valsalva from earlier in the eighteenth century.96 Dissecting rooms existed at Vienna, Pavia, and at the Hôtel-Dieu in Paris from about 1754.97 Yet these existed in the hospitals, and thus were held in suspicion by the new clinical medicine. Marie François Xavier Bichat (1771– 1802) claimed to be saving anatomy from being lost to history.98 In other words, because the study of anatomy took place in hospitals and was embraced by the faculties

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of medicine, the clinic held it in suspicion. Bichat was attempting to “save” anatomy due to its having been ostracized by the clinic. Foucault notes that before pathological anatomy and the clinic could come together, the clinic had to shift from the mythology of visibility and expressibility— the joining together of seeing and knowing and the conjunction of accurate and true description in the clinic — to the probing question and the analytic stance. The master clinician originally had been characterized as a passive reader scanning the surface of the body. Yet with the rise of chemistry, something altogether more analytic and questioning became a central feature of the clinic. This deployed gaze “was not content to observe” passively that which stood before it, but instead it was a calculating gaze, sizing up its object.99 Chemistry, after all, is about analysis of the substance of what appears. It seeks something deeper. As already noted, the rise of the clinic brought a convergence of science and teaching. Now, in a further development of the clinic, the science of the clinician was not merely that of passive observation. Foucault claims that, with the analytic stance, the gaze moved from passive reading to active penetration. The clinician was not merely seeing and describing what stands before him, but also questioning it, in a kind of probing of the depths of disease and the body. This questioning and probing stance opened up the possibility of the penetrating gaze — one that peers into the depths of the body. This idea of the penetrating analysis was central to my own medical education, as a kind of questioning congruent with scientific methodology. One listens to the patient’s story and gathers together the subjective symptoms as described by the patient. One questions by probing more deeply into the patient’s depiction of his symptoms, into the crevices of his body, his psyche, and his social life. The practitioner then formulates a hypothesis as to what the disease might be. Then an examination is performed that has certain statistical specificities and sensitivities, with certain positive and negative predictive values depending on disease incidence in the population. One either confirms the hypothesis or refutes it; if refuted, another hypothesis is formed. Then one performs other kinds of tests — blood work, radiographs, CT scans — all designed to penetrate more deeply into the body, either confirming or refuting the hypothesis. Thus, the story goes, the clinician is a scientist

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engaged in the scientific methodology of generating and testing hypotheses. Such an understanding of medicine is how Abraham Flexner depicts the method of medicine; Flexner identifies a similarity in the method of clinical medicine and in the method of scientific investigation.100 For the early nineteenth century, though, this idea of the penetrating gaze was new, and it probed a different and new space — the spaces deep within the body. The penetrating questioning would come to transform anatomic investigation. Thus, a new kind of pathological anatomy was born. Foucault claims, moreover, that the rise of autopsy was made possible through a rewriting of history. The doctors of the early nineteenth century needed to see themselves as seeking a prohibited knowledge and as exposing the inadequacy of the old ways of thinking for the needs of the new society. The physician had to view himself as part of the “anatomical church militant and suffering.”101 As the story goes, doctors had to sneak into cemeteries and dig up corpses in order to evade the religious and moral prohibitions against dissecting corpses and thus bring new knowledge to medicine. However, laws already existed in most of early-nineteenth-century Europe that allowed for dissection for purposes of knowledge and teaching, and the church was not opposed to dissection at this time. There was no need to rob graves. Yet the greatest physicians of the new medicine could be found sneaking around grave sites, digging up the dead for dissection.102 The dead body became the fetish of medicine; the desired object was knowledge, and the dead body came to stand for that knowledge. Death, too, was entitled to the clear light of reason. The knowledge of life had to be aligned with the “white visibility of the dead.”103 Foucault points out that his reader might be tempted to think that subject and object, doctor and patient, had been brought close to one another in the clinic and that this coming together resulted in a great leap forward in medical knowledge.104 Yet this interpretation, while partly accurate, covers over much that is important to the shift in the ground of medicine. This shift bears jointly on the object and the place of the subject, on the linguistic grid that brings the object into relief for the subject, and on the analysis applied by the subject to the object: “What is modified in giving place to anatomo-clinical medicine is not, therefore, the mere surface of contact between the knowing subject

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and the known object; it is the more general arrangement of knowledge that determines the reciprocal positions and the connexion between the one who must know and that which is to be known.”105 Thus, we are not talking about the mere coming together of the subject and its object. Instead, the conceptual arrangement of knowledge determines both the subject and the object, allowing the subject to see and say something different than had been seen or said before. We see, once again, Pickstock’s epistemological circuit, where medical knowledge is “based entirely on objects, whose ‘being’ does not exceed the extent to which they are known.” Anatomic medicine changed the way in which space was conceived: it turned itself to a new kind of penetration, where doctors were no longer dealing with the mere space of the clinic at the bedside. Now, the subject with his analyzing gaze can penetrate deeply into the space of the patient’s body, just as the anatomist can. What is the relationship between the temporal symptoms (this happened, then that happened, then that . . .) and the spatial aspects of tissue? Now the clinic — with its concern for a patient showing herself to a field of gazers who see and speak in order to know — turned the gaze more deeply. Foucault claims that several anatomists, from Morgagni to Bichat, Bouillaud, François Joseph Victor Broussais (discussed below), and Petit, began to understand the seat — the spatial location — of disease as central to its past and its future. In short, with pathological anatomy, one could anchor disease firmly within the body. By localizing the space of origin in the body, one could also localize the time of origin in the body. With regard to disease, space and time coincide within the body. As Foucault argues, [T]o localize was to fix only a spatial and temporal starting point. For Morgagni, the seat was the point of insertion in the organism of the chain of causalities; it was identified with its ultimate link. For Bichat and his successors, the notion of seat is freed from the causal problematic (and in this respect they are the heirs of the clinicians); it is directed towards the future of the disease rather than to its past; the seat is the point from which the pathological organization radiates. Not the final cause, but the original site. It is in this sense that the fixation onto a corpse of a segment of immobile space

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may resolve the problems presented by the temporal developments of a disease.106 In a sense, Foucault is claiming that Bichat had misunderstood Morgagni; he read Morgagni’s concept of “seat” not in terms of disease essences with formal and final causalities, but merely as the origin of the efficient cause of the disease. For the clinic, symptoms and signs point to their origin in space and time — the locus — and from this seat, one can know the future of the disease. Foucault claims that the new alignment of anatomy and the clinic allowed for a new way of conceiving time and disease: The possibility of opening up corpses immediately, thus reducing to a minimum the latency period between death and the autopsy, made it possible for the last stage of pathological time and the first stage of cadaveric time almost to coincide. . . . Death is now no more than the vertical, absolutely thin line that joins in dividing them, the series of symptoms and the series of lesions.107 The series of symptoms discerned in the clinic concerns time; the series of lesions discerned in pathological anatomy concerns space. Death occupies no space; death sits outside time. Death is medicine’s transcendental. And still death is immanent, for it is also the final point of disease time. Death is both the end of life and the end of disease — in the sense of a terminus, the final effect in the series of causes and effects. And it is from the heights of death itself that both life and disease can be analyzed. Death is now “endowed with that great power of elucidation that dominates and reveals both the space of the organism and the time of disease.”108 Death — as the end of life and the end of disease — becomes the pivotal point of analysis for both life and disease. Thus, death is the “unsupersedable model, prescribed by nature.”109 The living eye of the clinician has shifted, Foucault claims, to become a fixed gaze — a dead gaze — against the horizon of a dead body. Death is integrated into “a technical and conceptual totality,”110 an epistemological circuit. Whereas earlier, death had been conceived as that which played behind the

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doctor’s back, hidden by the processes and flux of life and disease, now the medical gaze can pivot on itself and demand “of death an account of life and disease.”111 The flux of life, the movement of bodies in space and time, finds in the stability of death the ground of medical knowledge. Death is the end of flux, the end of time, localized in the space of the body. Yet, Foucault claims, just as the processes and flux of life were known against the stable ground of death, so the processes of disease began to be understood against the same background. But interestingly, the principles of disease began to look very much like the principles of life.112 With the reorientation of life, disease, and death, the relationships change. “It is not because he falls ill that man dies; fundamentally, it is because he may die that man may fall ill.”113 It is because matter tends to stasis that life becomes a wonder and that disease becomes possible. Degeneration occurs both due to the temporal dimension of life and to the spatial dimension of disease; longevity leads to degeneration over time, with little in the way of spatial lesion, and too much degeneration localized in the space of the body leads to rapid death.114 Something else occurred as a result of this new shift of the clinic to an anatomo-clinical model of medicine. As already indicated, in the older medicine, signs and symptoms were related to one another; but in the clinic, where disease is questioned, symptoms became primarily the subjective experience of the patient, and the clinician’s gaze read the signs as more true than the subjective experience. Now, by bringing anatomy into the clinic, disease can be more fully questioned. Not only are signs read, but signs become the speaking of the disease from deep within the body. Whispered pectoriloquy and egophony115 are signs spoken by the disease and literally heard by the clinician from the depths of the body. In addition, touch takes on greater significance. Diseased organs give up their secrets through the knowing touch of the doctor. Thus, with sight, hearing, and touching, the hidden disease is triangulated and brought to the surface; it is made more fully known. Whereas early in the clinic, diseases were merely read, now they are questioned. The clinic became increasingly focused on the techniques used to solicit the truth of disease from within the body. The techniques of the clinic allowed the doctors “to project upon the living body a whole net-

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work of anatomo-pathological mappings: to draw the dotted outline of the future autopsy.”116 Thus the techniques of the clinic elicited what could only have been known definitively through dissection of the body.117 The analytic technique acts in the same manner as the autopsy. Both reveal disease; the violence of the penetrating gaze is an analogue to the violence of opening the corpse. This new normative object, the dead body, comes to represent the patient’s living body, claims Foucault. The patient, who was the absolute subject of the disease, has now become the object against which both the gaze and the analytic probing of the doctor are directed. In the absence of the definitive knowledge afforded by the autopsy (this seeing for oneself ) in the domain of sight, one can at least catch a glimpse of disease deep within the body through eliciting signs, soliciting sounds, and palpating with a penetrating touch. Thus, the gaze is a hearing and touching gaze, a listening and tactile gaze: “[E]ar and hand are merely temporary, substitute organs until such time as death brings to truth the luminous presence of the visible; it is a question of mapping in life, that is, in night, in order to indicate how things would be in the white brightness of death.”118 Death and sight are the ground of knowledge in the clinic. Life is night; life, in its flux, is darkness. Death is the halting of time within the space of the body; the stable seeing of the clinician is the opposite pole of death. The doctor’s horizon is death, against which life and disease play themselves out; death’s subject — the one who subjects the body-object, the patient-object — is the doctor, and no particular doctor, any doctor. The dead body and the dead gaze encounter each other in the clinic. On the one pole, what is achieved, then, is a diffuse subject. It does not matter who is gazing; all doctors gaze and question with the same technique. On the other pole is the horizon of death, the dead body, with autopsy lines drawn over that body on which the doctor gazes. The history of medicine, as Foucault describes it, is thus a history of shifting spaces. The abstract space of forms gives way to the political space of epidemics. The political space of the Revolution produces a revolutionary medicine, which in turn gives way to the clinical space. And the clinical space of disease brings into its own fold the

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anatomic space of the body. By shifting space away from the communal space and into the body, we gain knowledge of the individual. Foucault comments that knowledge of particulars — what Aristotle says is an impossibility —finally has been achieved.119 Moreover, space and time coincide in death; time stops in this particular space of this particular body. The dead body thus acts as the epistemological foundation of knowledge because it is the stable ground against which the flux of life and disease can be known. The stable space of the dead body allows medicine to perfect its language, a language that is diffused throughout the clinic. The questioning of a universal technique acts for the clinician like the stable ground of death, and the death of the individual creates the possibility of knowledge of the individual. “Death left its old tragic heaven and became the lyrical core of man: his invisible truth, his visible secret.”120

A rC h Ae ol o g y  oF  th e  C l i ni C

It has been assumed, and to a certain extent many people continue to assume, that medicine has been practiced in an unbroken chain from Hippocrates to around 1830. Even today, many think that medicine still has unbroken ties to Hippocrates; others think that the ties have been broken, but we simply need to restore them — to mend the cloth that is modern Western medicine. However, the medicine of the 1760s and that of 1830s were radically different and in most ways incompatible. In fact, the four medicines discussed in this chapter — the medicine of abstract, formal space, the medicine of political space, the medicine of clinical space, and the medicine of anatomic space of the body — vied for pride of place starting in the early nineteenth century. A new synthesis would have to be forged. What is especially fascinating in this history was the disdain that the anatomists had for the essentialist medicine of the faculties; and yet, even among the anatomists, many still thought that the lesion found in the body was not the disease but merely the seat where disease planted itself in the space of the body.121 The lesion exists, on this account, as an effect of a prior disease cause. So the anatomists, who were very suspicious of the older medicine of forms, could not escape a kind

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of medicine of forms, where the disease essence was the formal cause of the lesion in the body. The anatomists claimed in frustration that the disease — the prior cause of the lesion — withdraws from the anatomist’s methodology.122 One thinker in early-nineteenth-century medical history was able to pull these loose strands together — the medicine of disease forms, the medicine of the clinic, and the medicine of anatomo-pathology. Broussais (1772 – 1838) reclaimed something from the older medicine of forms, but in a nonessentialist way. He brought back the concept of inflammation, which had been virtually abandoned by clinical and anatomical medicine as part of the medicine of forms. The idea was that inflammation of the lung and inflammation of the knee — inflammation in two noncontiguous body parts — assumed a prior disease essence standing behind both; this theory of disease had fallen aside with the shift to anatomic pathology. Broussais was able to do away with the formalist medicine once and for all, but through an appeal to this older formalist idea of inflammation. By focusing on inflammation, which the anatomists and the clinic had set aside, he was able to claim that both fever and localization were connected functionally. Thus, rather than appealing to some abstract general being of disease that transcends the anatomy as the formal cause of anatomic disruption, Broussais argued that the anatomic function is disrupted by an immanent cause — an efficient cause — that irritates because it has irritating properties. Broussais made possible a medicine where inciting agents — not essences — were the prior causes of disease, allowing him to discard the notion of an ever-elusive first or formal cause of disease, an idea that Claude Bernard would later inherit from Broussais. These agents could produce disease in an immanent and efficient fashion, both from inside and from outside the body, and thus disrupt physiology. For us, these external disruptive agents of disease manifest themselves as toxins, bacteria, viruses, fungi, and other environmental insults. For us, the internal disruptive agents of disease are processes such as decay of structure that affect mechanisms of bodily function, for example, heart disease, or cancer, or the activation of tumor promoter genes, or the failure of tumor suppresser genes. Broussais’ medicine would need to be refined in the crucible of medical science, but he pointed the way toward a medicine that we practice even today.

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Foucault’s point is this: one medicine did not beget another medicine in a triumphalist history where reason and science prevail, as historians of continuity might claim. Nor do we find a medicine that was simply continuous between Hippocrates and the Enlightenment, with a onethousand-year disruption caused by the excesses of medieval speculative metaphysics. Instead, we find a medicine with a myriad of threads, each with its own history, which were woven together in the uneasy relationship of the clinic. Thus, the organization of medicine shifted to the clinical space, where patient, master, and pupil come together, where death acts as the stable ground against which life and disease can be known, and where the patient is no longer a subject, “subject” to the disease. Now the patient is an object that is subjected to medical analysis, to the sovereignty of a new science. Medicine is poised to become what Foucault calls the queen of the human sciences. And the violence of this medicine begins in the mutation that is modern medicine.

Co nt i n u i t y  A n d di sC on t i n ui ty

Foucault argues for two main theses that are important to my thesis in this book. First, medicine changed by virtue of shifting its space from the formal space of tables to the political space of public health, then to the clinical space where science and practice come together, and finally to a medicine dependent upon the dead body as that which can be mapped onto the living body. Yet these different medicines do not occupy discrete spaces per se. Just as transitions in time are not immediate, abrupt, and clear, similarly, transitions in space are often blurred and depend upon what the doctor wants to do. For instance, contemporary medicine retains something of the formal medicine of tables in a log such as that of the Diagnostic and Statistical Manual of Mental Disorders, which I have already mentioned. Moreover, physiological medicine — matter in motion — retains a view of the body similar to that of the medicine of forms, except that it does not seek abstract forms in the sense of Platonic forms, but instead seeks abstract laws by which physiology operates. In addition, medicine continues to deploy the probabilistic medicine of public health in its evidence-

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based medicine. Furthermore, medicine retains its dependency upon autopsy in that what could not be known before death can be known after death. Finally, medicine continues to be learned in the space of the patient’s bedside, where, I, as professor of medicine, teach students to speak and describe what is seen in order to capture what is pathognomonic of the disease. These different versions of medicine continued to battle for pride of place throughout the nineteenth century and into the twentieth and indeed are operative today. In the next chapter, I shall describe part of that struggle and argue that the medical school itself is the space within which each of these medicines are held together, despite their almost incompatible stances. Second, and Foucault’s most important point — and a point most problematic for my thesis — is the idea that the dead body becomes the normative body and death becomes the fundamental ground of medical knowledge. Even in the early nineteenth century, the time described by Foucault, medicine began to turn away from anatomy to physiology, from the dead body to the living body. Linda Emanuel makes the philosophical point that just as life is the state of flux of a body, so death is the state of flux of a body, now the flux of decay.123 The transition between life and death is a transition from the flux of life to the flux of decay. Still, death remains the point around which life flips to decay. Foucault claims that for medicine, death became an absolutely thin line — standing outside space and time, literally other than our immanent series of causes and effects. Death became a line that both joins and separates living-time and dead-time. Death became the “concrete a priori of medical experience.”124 Death, then, became an ideal-type lurking in the minds of doctors. After all, the first patient of most doctors in the West is a dead patient. This ideal-type is laid over all living bodies in flux that the doctor will later encounter. Medicine, then, according to Foucault, embraces an epistemology of death such that the dead body is the normative body, and thereby also embraces a nominalism, where the dead body can be mapped over the living reality of the body so that truth claims about living bodies can be made. The diseased and living body as object of the doctor’s gaze is a being that does not exceed the extent to which it is known, and it is best known at autopsy. In a way, the dead body becomes the measure of all other bodies, living or diseased.

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As I have described earlier in this chapter, Foucault claims that the result of this kind of nominalism in medicine is also a shift in metaphysics: medicine precludes formal and final causation from its understanding of the body and elevates material and efficient causation. The great accomplishment of this epistemology of death is that the resulting metaphysics of efficient causation allows mastery over the living body as machine, as dead matter in motion, which I describe in detail in the next chapter. In addition, this medical nominalism allows not only for an exhaustive description of the body in motion but also for an exhaustive description of the body politic. For example, as discussed in the next chapter, the role of Stastik in Germany was to describe in words the state of the king’s dominion; the role of political arithmetic — an earlier term for statistics — was to describe in numbers the state of the body politic. Nominalism, similarly, became triumphant in medicine.

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Chapter

2

Maturing the Clinic

The development of medicine, in terms of Michel Foucault’s analysis, is not a continuous process, moving progressively forward. Different strands of medicine originating from different schools of thought coexisted in the late eighteenth and early nineteenth century, often loosely woven together: (1) the formal or essentialist medicine; (2) a kind of politicized medicine, in which the management of the health of the body politic became a central focus of government; (3) the medicine of the clinic, which was primarily a medical educational movement, in which teaching and medical science went hand in hand, joined at the bedside of the patient; and (4) anatomo-pathology, where dissection of the dead body became the ground for medical knowledge. I have proposed, in addition, that the questions addressed in medicine in the early part of the nineteenth century are shaped by a certain understanding of death as an ideal-type, and I will argue that this epistemological stance continues to shape certain practices in medicine today. Some will find this idea problematic, and I will turn to the medicine of the nineteenth century to make the case. The institution of medicine adheres to a history of its own progress, and medicine tends to perpetuate a certain naïve understanding of its progress. Namely, we are moving to more and better knowledge, and we will be able to deploy new technologies to assist in bettering the •    61

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human condition. Such a narrative is never really written down, but it permeates medical practice. This narrative has also entered the contemporary psyche. The average layperson who consumes medicine today might think that there is one kind of medicine, represented by the visible institutions of medicine (doctors, clinics, hospitals, nurses, science, the National Institutes of Health), called “traditional” medicine — as opposed to alternative or complementary medicine. “Traditional” medicine is scientific. Today’s narrative of progress would have us believe that in the nineteenth century there were two kinds of medicine: first, the medicine of midwives, charlatans, snake oil salesmen, and barber surgeons; and second, the medicine of academically trained doctors initiated in scientific understanding for the betterment of the human race. The story goes that through a series of scientific — and political — triumphs,1 medicine kept getting better and better. The story goes that science paved the way for progressively more efficient and effective medicine. For us today, an alternate story is also propagated, namely, that a scientifically reductionist and dualist medicine has crowded out a more holistic medicine, which is not dualist or reductionist.2 This “holistic” medicine, it is claimed, is older and more congruent with the natural order. To reduce its power, “traditional” medicine has called the more holistic medicine “alternative medicine.” To attain power, the newer holistic medicine has called itself “complementary medicine.” There is yet a third story, namely, that the so-called monolith consisting of traditional or institutional or regular medicine is not so monolithic, that in fact there are multiple medicines and multiple ways of seeing the body, even within scientific or traditional medicine.3 For example, a single patient may go to the radiologist, who applies his techniques to her. He sees her body as shades of gray and echoes of soundwaves on flat screens. That same patient may go to the cardiologist, who sees her body as a series of circulatory vessels and as a series of physiological calculations. That same patient may go to the surgeon for an operation; the surgeon sees the body as a well-demarcated field of glistening tissues within the intimate space of a cavernous torso. If there are multiple kinds of doctors applying multiple techniques to the body, then what appears to the surgeon, the cardiologist, and the radiologist

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are different bodies. There are multiple medical experiences of the body; phenomenologically speaking, different bodies emerge because different factors shape what appears for the different clinicians.4 This latter view seems true at one level. The cardiologist’s experience of the body is radically different from that of the surgeon or the radiologist. There is a certain discontinuity in that different techniques — different skills, different modes of thinking, and different ways of seeing — come to shape what the doctor perceives, such that the surgeon sees a different body from, say, the one seen by the radiologist. However, this argument seems exaggerated, because these various medical subspecialties are able to converse with one another despite the apparent discontinuity of their different techniques, skills, and backgrounds. A conversation is possible among them, whereas a practitioner of Santeria, for example, cannot converse with the radiologist at all. Although each practitioner — cardiologist, radiologist, or surgeon — of traditional medicine may experience the body of the same patient differently, there remains a certain coherency among the cardiologist’s, the surgeon’s, and the radiologist’s accounts of the body. There is no real discontinuity between these three subspecialties of institutional Western medicine. I do not find, as does Katharine Young,5 discontinuity among the subspecialist disciplines, but rather a remarkable continuity and coherence among those who practice regular medicine today. So what maintains that coherency? To a very large extent, it is the fact that doctors are all trained in the modern medical school, which has standards for medical education imposed for quality purposes by the American Academy of Medical Colleges. Historically, that coherence had to be politically negotiated.6 The partisans of nineteenth-century American medicine were not members of an established guild of what would become traditional medicine, but instead were an unregulated set of practitioners who trained in the apprenticeship style of education. The fight was not between cardiologists and radiologists, or between surgeons and cardiologists, but between those trained in schools and those trained in apprenticeships, at least in the United States and Canada.7 In France, however, as Foucault noted, the connection of several strands of medicine was prompted by political factors and ideas influenced by the French Revolution. As pointed out in the last chapter,

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different kinds of medicine in France came together to create what in the early 1800s was an uneasy relationship held together by the clinic, where patient, master, and pupil came together, and where the disease could be exhausted in seeing and saying, in gaze and in speech, without remainder. Foucault ends his own story in about 1830, when the tension between the anatomists and the clinical medical practitioners was at its height, and when notions from the older medicine of forms, such as essential fevers, began to creep back into the fold of regular medicine.8 According to Foucault, this late reintroduction of ideas from the older medicine of forms (with a difference, no doubt) ushered in the possibility of a better understanding of physiological function. Yet tensions were not eased between the formalists and the clinicians. There have always been those who call medicine an art, as there are today,9 but there are periodic calls for the art to be made more certain, that is to say, more scientific.10 New battle lines were drawn between those who would make medicine a science through experimental medicine and physiology and those who would do so through an appeal to a statistical method (the médecine d’observation).11 This tension between these two strands of medicine continues to manifest itself today in the tension between the basic sciences and the so-called clinical sciences. On the one hand, the anatomists and the physiologists located the space of control in the inner space of the body; on the other hand, for those who identified medicine as a statistical enterprise — a medicine of statistics, a medicine that found disease in Rouen in 1769 — the locus of control was in the space of the body politic. For its part, physiology begins in anatomy, and vivisection — opening the living body — perpetuates the use of the dead body in medicine; opening the living body is no different from opening the dead body, as Claude Bernard claims.12 An apparent problem for the larger thesis of this book — namely, my claim that the dead body is epistemologically normative and that death animates contemporary medical practices — is the fact that physiology is primarily about the living body. In the first main part of this chapter, I shall argue otherwise, namely, that the dead body is the ground upon which physiological principles stand. Moreover, I shall also claim that ideas about motion in physics are operative, such that, again, formal and final causation are separated from material and

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efficient causation, a move that, in a way, deadens medical philosophy. Thus, a dualistic philosophy develops in medicine where an animating principle — a vitalistic principle — efficiently causes matter to move in the way that it does. Only the addition of something else — the deus ex machina— could force matter to move. In the second main part of this chapter, I analyze the rise of statistics in medicine. Statistics begins in political arithmetic concerned with matters of state and moves into matters of psyche, society, and other biological ideologies, such as eugenics and sociobiology. Statistics remains central to the care of the dying in the biopsychosociospiritual medicine practiced by palliative care. “The old power of death that symbolized sovereign power was now carefully supplanted by the administration of bodies and the calculated management of life,”13 and, I might add, of death. In the third main part of this chapter, I shall demonstrate how these different strands are held together in the tension of today’s medical school.

M e di c i n e  a s  ph y s i o l og i ca l F u nct io n From death to Vitalism

In a thoroughgoing historical and conceptual analysis of the philosophy of motion, Simon Oliver examines shifts in our understanding of motion following the publication of Newton’s Principia Mathematica.14 A brief explication of Oliver’s work is warranted here, to advance my own argument. The shift began centuries prior to Isaac Newton; Oliver traces the philosophy of motion through Plato, Aristotle, Avicenna, Robert Grosseteste, Roger Bacon, and Thomas Aquinas. We think of motion today as movement through space, or locomotion. For Aristotle, motion is not limited to the realm of physics and of local movement through space. Motion, for Aristotle, is the passage from “potency to act.”15 Where today we think of “act” or “action” as a kind of doing of something, Aristotle thought of “act” as a state of being, where being itself is in motion. A rock, as rock, can be said to be in the act of being a rock. Thus, Aristotle’s understanding of motion had metaphysical import; to move from potency to act is to move from a potentiality, through becoming, to being actualized. “Such motion,” Oliver claims,

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“is explained not in terms of mechanistic chance and necessity, but rather in terms of teleology and the order of formal and final causes which render the cosmos intelligible.”16 For Aristotle, then, there is a hierarchy of the sciences, and motion is relevant at every level. “The sciences are productive, practical or theoretical according to whether their goal consists in the making of artifacts, the human performance of actions or the attainment of principles.”17 Thus, Aristotle could speak of motion at the level of physics, at the level of the poetical and rhetorical sciences, at the level of politics and ethics, and finally, at the level of the theoretical sciences (natural philosophy, mathematics, and metaphysics).18 As early as the great Persian philosopher Ibn Sina (Avicenna), according to Oliver, a kind of dualism develops, consisting in the separation of physics from metaphysics.19 This dualism trickled down through history to shape the thinking of Bacon and found its most robust articulation in the work of Isaac Newton. On Newton’s account, motion is solely movement through efficient causation. With Newton we find not only a decisive break with the Aristotelian understanding of motion as relevant to many spheres of being and doing, but also a break with Aristotelian metaphysics. Newtonian physics is concerned not with motion per se but with the forces that cause a body to move or to resist movement.20 That is, the study of motion became the study of forces and the study of prior efficient causes in the immanent series of causes and effects. Both physics and physiology became concerned primarily with efficient causation. Foucault claims that for Broussais, as described in chapter 1, the movement of the functioning organ — physiology — plays itself out against the representation of the dead spatial relations of anatomopathology. Still, for Broussais, something of formal medicine remained as part of the anatomo-clinical method, namely, the idea of function, although without an appeal to metaphysical forms in either the Platonic or the Aristotelian sense. In addition, the great physiologist Bichat embraced a single idea taken from the medicine of forms, namely, the idea of vitalism, of a ghostly life force that would move the machine of the body. Foucault hints that Bichat’s notion of this life force — itself nonmaterial, yet also an efficient cause acting on matter — was built on a scientific methodology dependent on the death of the animal. In fact, in

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Bichat’s Physiological Researches on Life and Death, it is clear that his notions about vitalism — about life — are informed by his researches on death.21 Bichat opens his study with a very concise and revealing statement: “Life consists in the sum of the functions by which death is resisted.”22 Life is the sum of functions of organic matter in motion. Function is distinguished from purpose. Bichat describes two types of motion that animate organic life, that is, life in the organs: sensible motion and organic contractility. Sensible motion is a motion of inorganic materials. Thus, sensible motion is locomotion of material objects following the laws of physics. Organic contractility is the motion of expansion and contraction that one might see in muscle. These two combined to allow the organs and the organism to move in space. In contrast to these two types of motion in the life of organs and organic function, moreover, Bichat claims another kind of motion for life itself, for the life of the whole organism. This motion is the motion of the animating principle; it is the motion that makes the life of the organism as a whole possible, in what amounts to a theory of vitalistic dualism. So, Bichat claimed, on the one hand, there is the motion of organs, which operate on the laws of physics and the laws of organic contractility; on the other, there is the motion of life itself.23 For our purposes, the most important aspect of Bichat’s physiology is that the laws of sensible motion and of organic contractility are parallel to the laws of physics.24 For Bichat, the motion of organs and organisms is not unlike the motion of other nonliving materials in the universe, in which the prior efficient cause forces the motion of material. Nonliving matter moves through efficient causes that force the next effect in the immanent series of causes and effect. Bichat consequently thought that he had to appeal to vitalism and a deus ex machina to name that which makes something alive per se. Most important, the second part of Bichat’s book — the part with his researches on death — illustrate the central relationship between death and knowledge, for it is in the study of death that we can understand not only the physical motion of organs but the motion initiated by the vital force. Bichat describes in detail his scientific investigations on animals, focusing on the three vital organs: heart, lungs, and brain. In a series of experiments, he systematically kills or disrupts an animal

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organ and observes its effects, first on other organs and then on the animal’s life. So, for example, he stops the heart and observes the effect on the brain. He again stops the heart of other animal subjects and observes the effects on their lungs, and again stops the heart of other animal subjects and observes the effects on the other organs. Finally, he stops the heart on another set of animal subjects, observing the effect on the animal life itself. He repeats the experiments by disrupting different vital organs and observing the effects sequentially. For example, he disrupts the function of the animals’ lungs and observes the effects on hearts, then on brains, then on other organs, and finally on the life of the organism as a whole. Finally, he repeats the series of experiments, this time by destroying neurological function (either in the brain or in the nerves), observing the animal’s lungs, repeating it with observation of the effects on their hearts, and again observing the effects on other organs and finally on animal life itself.25 One has to forcibly cause death in order to observe how the other motions — sensible, contractile, and vital — cause motion, that is to say, cause life in the animal. Bichat’s methodology is careful and his approach highly systematic. Moreover, one cannot deny the importance of death in gaining knowledge; nor can we ignore the violence perpetrated in these experiments. Just as for the anatomist, the dead body reveals the secrets of life to the physiologist. In the killing of the body, in the death of the body, the truth about life is made manifest. After all, “[l]ife consists in the sum of the functions by which death is resisted.” Physiological knowledge of life, like anatomic knowledge, is derived from death. From Vital Force to efficient Force

Some physiologists read Bichat as too ethereal in his vitalism. Bernard, the preeminent physiologist of nineteenth-century medicine, grounded physiology in function, like his predecessor Broussais, but he did so in a much more robust fashion than Broussais, while also avoiding Bichat’s vitalism. It is worthwhile to examine Bernard’s understanding of scientific method here, since it reveals his understanding of metaphysics — that is, of causes — and its relationship to function. An extended quote from his classic book, An Introduction to the Study of Experimental Medicine, is illustrative.

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We must acknowledge as an experimental axiom that in living beings as well as in inorganic bodies the necessary conditions of every phenomenon are absolutely determined. That is to say, in other terms, that when once the conditions of a phenomenon are known and fulfilled, the phenomenon must always and necessarily be reproduced at the will of the experimenter. Negation of this proposition would be nothing less than negation of science itself. Indeed, as science is simply the determinate and the determinable, we must perforce accept as an axiom that, in identical conditions, all phenomena are identical and that, as soon as conditions are no longer the same, the phenomena of inorganic bodies as well as in those of living beings and the influence of life, whatever view of it we take, can nowise alter it. As we have said, what we call vital force is a first cause analogous to all other first causes, in this sense, that it is utterly unknown. It matters little whether or not we admit that this force differs essentially from the forces presiding over manifestation of the phenomena of inorganic bodies, the vital phenomena which it governs must still be determinable; for the force would otherwise be blind and lawless, and that is impossible. The conclusion is that the phenomena of life have their special law because there is rigorous determinism in the various circumstances constituting conditions necessary to their existence or to their manifestations; and that is the same thing. Now in the phenomena of living bodies as in those of inorganic bodies, it is only through experimentation, as I have already often repeated, that we can attain knowledge of the conditions which govern these phenomena and so enable us to master them.26 First, I will draw attention to the relationship of method to metaphysics illustrated here. Bernard articulates a philosophy of determinism, which he uses almost interchangeably with rigorous empirical science. Second, I will explore the idea of a lack of difference between organic and inorganic, which means that there is no real difference between life and death, as Bernard explicitly notes. For Bernard, like many scientists of his time, an essential feature of discerning causation in the world — that is to say, of determining a law of nature — is that the phenomenon must be reproducible. Only

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reproducible features of the world can claim to be objects of true knowledge, true science. The task of knowing is difficult, because the human mind jumps to conclusions very quickly, indeed too quickly, when observing phenomena: This tendency [to jump to conclusions in interpretation of natural phenomena] is spontaneous; a preconceived idea always has been and always will be the first flight of an investigating mind. But the object of the experimental method is to transform this a priori conception, based on an intuition or a vague feeling about the nature of things, into an a posteriori interpretation founded on the experimental study of phenomena.27 The mind begins in speculation, but that speculation must be tempered, not only by pausing and reflecting on what one has seen, but by manipulating and controlling certain features of the phenomena and then drawing conclusions as to the immediate prior cause. “All human knowledge is limited to working back from observed effects to their cause.”28 Yet the human mind tends to exceed its limits in its claims to knowledge. According to Bernard, this lack of discipline resulted in the dogmatism and flights of fancy of medieval scholasticism.29 The undisciplined speculative tendencies of the mind lead us to seek “the why of things.” “Why” questions, however, are not proper to the mind. Instead, if men will pay attention to their experiences, they would soon understand that they “cannot get beyond the how” of things, the immediate prior cause. In medicine, it is “absurd to concern one’s self with the question ‘why.’ ”30 Rather than speculation on “why” things work, science treats questions about “how” things work. It is the feature of answering “how” questions, the questions of mechanism and efficient causation, that is the proper focus of reason and the human mind. For the experimental scientist, what one perceives initially is the regularity of perceived phenomena of living beings. Since we know that there are causes and effects in regular living phenomena, we can learn how these phenomena work using causal reasoning. “We know, moreover, that what we call determinism of a phenomenon means nothing else than the determining cause or immediate cause determining the

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appearance of phenomena. Thus, we necessarily obtain the conditions in which the phenomena exist, and on which the experiment must act to make the phenomena vary.”31 The determining conditions (the immediately prior causes) and the determined phenomena (the effects that follow) are therefore the proper material for the scientific method. Getting at the laws of nature is the proper activity of experimentation and, indeed, the reasonable and proper activity of the human mind. The activity of scientific investigation gives us greater power over nature: [B]y a marvellous compensation, science, in humbling our pride, proportionately increases our power. . . . Though we do not know the essence of phenomena, we can produce and prevent their appearance, because we can regulate their physico-chemical conditions. . . .We know absolutely nothing of the essence even of life; but we shall nevertheless regulate vital phenomena as soon as we know enough of their necessary conditions.32 Here, we find exactly the shift in metaphysics to which I have drawn attention. “Why” questions, questions of purpose and final causation, emerge out of an overly speculative mind, a mind not focused by science on immediate prior causes. “Why” questions are out of order for the experimentalist. Physiology is not about purpose but about function. Bernard thus nips in the bud questions about essentialism and vitalism. Moreover, the purpose of knowledge is power over the phenomena. This is the typical framing of inquiry in scientific medicine: figure out the causes, and then manage the causes to bring about the effects one desires. To this end, physiologists “must carry their investigations into the minutest parts of the organism where life has its seat.”33 Like the anatomist, who seeks the truth of disease in the remote, unknown spaces of the body, the physiologist chases life into the ever receding space of the body; life, qua vital force, is where we have not yet looked, begetting the idea of a “life of the gaps,” akin to the idea of a “God of the gaps”— God, or life, forever recedes into the gaps in our scientific knowledge. It is important to note that Bernard thought of vitalist philosophy as a kind of stopgap. He states that his predecessors (such as Bichat) and his

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contemporaries differentiated three types of properties in living beings: “physical properties, chemical properties and vital properties.”34 Yet the term “vital properties” is merely provisional because we “call properties vital which we have not yet been able to reduce to physico-chemical terms; but in that we shall doubtless succeed some day.”35 Vital properties are just those properties that have not yet been understood in terms of science and efficient causation. In order to avoid vitalism, Bernard embraces a kind of complexity theory. He explains the difference between inorganic and organic bodies as consisting “merely in the greater complexity of phenomena, making experimental analysis and determination of the conditions incomparably harder.”36 That complexity is best addressed by attending to the order of the sciences, which build on one another. This help from other sciences is so powerful that, without it, the development of the science of vital phenomena would be impossible. Previous knowledge of the physico-chemical sciences is therefore decidedly not, as is often said, an accessory to biology, but on the contrary, is essential to it and fundamental. That is why I think it proper to call the physico-chemical sciences allied sciences, and not sciences accessory to physiology. We shall see that anatomy is also a science allied to physiology, just as physiology itself, which requires the help of anatomy and of all the physico-chemical sciences, is the science most closely allied to medicine and forms its true scientific foundation.37 Just as biology is best understood in terms of chemistry and physics, the medical sciences are best understood in terms of physics, chemistry, and anatomy, and the highest science is physiology. “To solve the problem of life, physiologists therefore call to their aid all the sciences — anatomy, physics, chemistry, which are all allies serving as indispensable tools for investigation.”38 Physiology is the queen of the sciences of life, which through a hierarchy of sciences is able to delineate the hierarchy of beings, from base matter to those living beings free in their environment. The order of the sciences follows the order of being, from nonliving, dead matter39 to matter in motion, that is to say, to life.

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From Vivisection to Mechanical physiology

By following the order of the sciences, we “broaden our power over nature,”40 over the “animal machine.”41 Here, human power and human knowledge work as one. “Physiologists, indeed, have only to take apart the living machine and, with the help of tools and processes borrowed from physics and chemistry, to study and measure the various vital phenomena whose law they seek to discover.”42 The search for the laws of physiology, of life, is really no different from the search for the laws of inorganic bodies in motion. Bernard argues that “[w]e must therefore . . . stop differentiating the phenomena of living bodies from those of inorganic bodies, by a distinction based on our own ability to know the nature of the former and our inability to know that of the latter.”43 The mind can know either living or nonliving beings, for they are in a way the same. However, it is still necessary to establish physiology as a legitimate science and describe by what method physiology proceeds: We have succeeded in discovering the laws of inorganic matter only by penetrating into inanimate bodies and machines; similarly we shall succeed in learning the laws of properties of living matter only by displacing living organs in order to get into their inner environment. After dissecting cadavers, then, we must necessarily dissect living beings, to uncover the inner or hidden parts of the organisms and see them work; to this sort of operation we give the name vivisection, and without this mode of investigation, neither physiology nor scientific medicine is possible; to learn how man and animals live, we cannot avoid seeing great numbers of them die, because the mechanisms of life can be unveiled and proved only by knowledge of the mechanisms of death.44 Both man and animal must be opened, and the secrets of motion of the nonliving, dead matter within the body will become visible to the scientific mind. In claiming that vivisection, including human vivisection, is important to the advancement of physiology, Bernard must have realized that he would be called on to justify his claim. He states:

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The prejudices clinging to respect for corpses long halted the progress of anatomy. In the same way, vivisection in all ages has met with prejudices and detractors. We cannot aspire to destroy all prejudice in the world; neither shall we allow ourselves here to answer the arguments of detractors of vivisection; since they thereby deny experimental medicine, i.e., scientific medicine.45 In short, one is unscientific if one does not support vivisection, and that in itself precludes his giving reasons of justification. After all, “[v]ivisection is only anatomical dissection of the living.”46 Despite this response, Bernard also develops a justification of vivisection by an appeal to history. He notes that animal vivisection has a noble history. The great Galen “can be considered its founder.”47 Vivisection passes down from one great man to another, through Graaf, Harvey, Aselli, Pecquet, Haller, to Magendie — Bernard’s teacher — and “entered physiology and medicine once for all, as an habitual or indispensable method of study.”48 Medicine can no longer survive, let alone advance, without it. Opening the living body will reveal the secrets of life; “[m]en have felt this truth in all ages,”49 such that vivisection has been allowed on criminals. The kings of Persia, Attalus III, the Ptolemies, and the “Grand Duke of Tuscany”50 allowed human vivisection in certain circumstances. Bernard even attributes to Celsus the view that “[i]t is not cruel . . . to inflict on a few criminals, sufferings which may benefit multitudes of innocent people throughout all centuries.”51 Yet Bernard seems ambivalent on the issue of human vivisection. On the one hand, he describes the practice by appealing to political rulers who had permitted vivisection on criminals. On the other hand, he also builds a moral case against it, even against the use of it on criminals. Do medical men have the right to do vivisection on humans? Bernard answers, yes, as long as it is for the good of the person who is opened. He notes that it is common practice among physicians and surgeons to carry out experiments on people, but only if there are gaps in knowledge and the medical scientists believe the experiment is for the good of the person.52 However, Bernard is outright opposed to vivisection on humans if a direct benefit to the person is not the motivation for the “experiment.” Even those condemned to death are not to be experimented upon, because “Christian morals” prohibit “doing ill to one’s

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neighbor.”53 However, criminals can be given various concoctions and medicines before execution, and they can be examined anatomically immediately after decapitation to study the effects anatomically.54 As for animal vivisection, however, Bernard believes that experimental medicine not only has the right but has it “wholly and absolutely.”55 It is important to note Bernard’s use of the language of rights in post-Revolutionary France, emerging out of the utilitarian claim that “the science of living beings can be established only through experiment, and we can save living beings from death only by sacrificing others.”56 The primary justification for vivisection, it seems, is the imperative of science, and that imperative is grounded in the men of science, who cannot afford the luxury of the squeamishness of society. Bernard asks rhetorically, “[S]hould we let ourselves be moved by the sensitive cries of people of fashion or by the objections of men unfamiliar with scientific ideas?”57 In arguing that vivisection is not intrinsically immoral, he states that a “cowardly assassin, a hero, and a warrior each plunges a dagger into the breast of his fellow.”58 Yet each action is not immediately judged immoral, because each may be motivated by different ideas. “A surgeon, a physiologist, and Nero give themselves up alike in the mutilation of living beings,” but what differentiates them are the ideas that motivate the actions. “A physiologist is not a man of fashion, he is a man of science, absorbed by the scientific idea which he pursues: he no longer hears the cry of animals, he no longer sees the blood that flows, he sees only his idea and perceives only organisms concealing problems which he intends to solve.”59 Science moves single-mindedly, without regard for sentient life. “[A] man of science should attend only to the opinion of men of science who understand him, and should derive rules of conduct only from his own conscience,”60 even if he must dabble in death in opposition to communally defined prohibitions. The goals of science are too high and good to allow detractors. The goals of science are mastery of the body and control of the living machine, as Bernard so often calls it. It is for the good of humankind that death must be approached, and indeed, it is for the good of humankind that death must be induced for the sake of knowledge. Knowledge of life emerges from our knowledge of death; knowledge of both normal and pathological physiology is born out of the death of humans and animals.61

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For these reasons, Bernard can claim about living machines, that is to say, living bodies, that “the words life, death, health, disease have no objective reality.”62 The function of the living being is the motion of nonliving matter, that is, dead matter, which is doing what it does in very complex situations. Any claim of objective reality for life or death is a form of metaphysical speculation; it is an overextension of the mind, where the mind ought not to go. The human mind can only establish the mechanism of immediate prior causes and their effects, and not seek for first causes. First causes are the sole purview of speculative metaphysics; the failure to understand this is where the Scholastics went wrong, according to Bernard. The historian Sebastian Normandin holds that Bernard is a physical vitalist,63 but his vitalism is no vitalism at all, because in explaining phenomena, Bernard will always turn to prior efficient causes; the notion of formal causes, the “why” of speculative metaphysics, always flits away to the gaps. It is therefore unnecessary to scientific explanation. Following Simon Oliver’s account, it seems that vitalism as an explanatory concept became necessary when the dualistic separation between physics and metaphysics took hold, that is, when motion was put in the realm of physics and not metaphysics, and when efficient causes were separated from formal and final causes. Bichat’s vitalism allowed for a modicum of formal causation and possibly even for final causation to be considered in physics and in the locomotion of matter. However, in stopping locomotion, in causing death, one can create more robust scientific explanations of life. In physiology, questions of life and death have no meaning,64 because all along we have been dealing with the very complex motion of nonliving (dead) matter. Thus, for Bernard, vitalism becomes superfluous. Life is a set of complex causal forces at work, compelling matter to complex motion. This philosophy of life as motion is even seen today in a popular textbook of physiology: “the human being is actually an automaton, and the fact that we are sensing, feeling, and knowledgeable beings is part of this automatic sequence of life.”65 These sequential forces — cause and effect — are at work in the milieu intérieur, the interior space of material bodies in complex motion. Bernard wrote of himself, “I think I was the first to urge the belief that animals have really two environments: a milieu extérieur in which

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the organism is situation, and a milieu intérieur in which the tissue elements live.”66 The metaphor of internal and external space, of borders and boundaries, is apropos. The interior must be violated in order for life to be known. “Living machines are therefore created and construed in such a way that, in perfecting themselves, they become freer and freer in the general cosmic environment.”67 The interior space governed according to the laws of physics creates the possibility of freedom in the exterior space of the body politic. Yet within another strand of medicine a very different idea dominated, which claimed that it, not physiology, was the ground of a truly scientific medicine. On this account, scientific medicine should be governed according to a different set of forces and a different kind of mechanism, the mécanique sociale.

t he  r i s e  o F  stati s t i c al  M edici ne  Médecine d’Observation

The other strand of medicine that claims to be “scientific,” and which can be traced (as noted in the previous chapter) back to Pierre Charles Alexandre Louis’s call for a médecine d’observation, is evidence-based medicine (EBM), which focuses on statistics, probabilities, and populations of patients rather than individual patients.68 According to Jan Vandenbroucke and Alvan Feinstein, the use of statistics in medicine was marginalized to the realms of public health until the twentieth century,69 although, oddly enough, Alfredo Morabia appeals to the nineteenthcentury Bernard as an early proponent of EBM.70 Proponents of EBM, such as Morabia, Vandenbroucke, and Feinstein, as well as members of the Evidence-Based Medicine Working Group, regard themselves as bringing science into the practice of medicine, where “practice” too often has been identified with an “art of medicine.”71 Contrary to Morabia’s claims, Bernard was clearly suspicious of statistical medicine, because to him it was too conjectural.72 Like any good physician confronted by a patient, in the absence of clear causal knowledge, Bernard would have appealed to probability and statistics, as Morabia argues.73 Yet phrases such as “ordinarily, more often, generally” or “nine times out of ten” should not be used, according to Bernard,

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unless they are empirical expressions; for these statements do not promote medicine as a science, and they suggest that the laws of physiology are not so law-like74 and therefore are not useful.75 Knowing that two of five patients die during surgery does not help one to know if the next patient to undergo surgery will be in the group that dies or the group that recovers.76 Statistics, at the time of Bernard’s writing, was referred to as the law of large numbers, or the law of averages, or the law of error.77 Bernard could not understand how there could possibly be a law of error in science,78 for all hearts operate on the same laws of physiology, not on statistical laws. Laws are determinate.79 Morabia’s thesis aside, the clear source of the use of the statistics in clinical practice, or as he calls it, the numerical method, was Louis. His most important work, Researches on the Effects of Bloodletting in Some Inflammatory Disease and on the Influence of Tartarized Antimony and Vesication in Pneumonitis, begins by describing numerical observations of patients with various inflammatory processes and argues from these that bloodletting was not as effective as it had been claimed to be.80 J. Rosser Matthews notes that Louis chose to examine bloodletting precisely because he wanted to challenge the new physiological doctrines of Broussais, who had only recently argued for continuing the practice of bloodletting on the basis that it was compatible with the new physiological teaching.81 “By placing emphasis on quantitative thinking at the level of the social group rather than on qualitative understanding at the level of the individual patient, Louis was attempting to appeal to the authority of number to justify clinical judgment.”82 Louis and his followers held that they, not the physiologists, were the true proponents of a scientific medicine.83 Thus, by challenging the practice of bloodletting, Louis was justifying the use of statistics and claiming the mantle of science for his version of medicine.84 Louis held that, by virtue of enumerating, medicine could become a science, but a science of actual observation and not a science of theory, dogma, or determinism;85 in other words, physiology, including Bernard’s physiological determinism, was too theoretical and dogmatic and smelled of medieval speculative philosophy. Louis was at war, moreover, not only with the physiologists but also with other mathematical statisticians, such as Adolphe Quetelet. He particularly wanted to avoid

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certain theoretical mathematical absurdities, such as Quetelet’s idea of l’homme moyen, the “average man.” As a clinician, Louis objected to notions such as the ideal-type of the average man, for what exactly is an average man?86 After Louis’s death, médecine d’observation lost its most articulate and ardent supporter, and the drive to apply statistics to clinical medicine waned, though it did not disappear. After all, in the absence of hard science, doctors inevitably fall back on conjecture, probability, and statistical ways of analysis. Louis’s influence on James Jackson, of Massachusetts General Hospital, was felt in the United States as early as 1835,87 and Austin Flint, another American physician, was a proponent of Louis’s numerical method throughout his career, spanning most of the nineteenth century.88 Furthermore, the rise of clinical trials gained momentum in the early part of the twentieth century. However, statistics applied directly to clinical decision making at the bedside — that is to say, the application of statistical methods to making particular decisions about patients — did not attain widespread use in American medical schools or clinical settings until after the publication by the EvidenceBased Medicine Working Group in 1992 of a ground-breaking essay in the Journal of the American Medical Association.89 Although the numerical method did not capture the nineteenth-century imagination for clinical medical practice in the way that physiology did, statistics found its true home in the late nineteenth and early twentieth century within epidemiology and public health. As noted by Foucault, the health of the public, the health of the body politic, became the focus of government, not merely because the public’s health is important, but because the battle for good health was also a battle of good government.90 In addition, the numerical method captured the interest of social and psychological scientists. The emphasis shifted away from application at the bedside and toward the statistical measurement of both individual and group behavior. Statistical methods became essential components for governmental concern, not only with health, public health, psychology, and sociology, but also for our understanding of such matters as intelligence, mental disorders, and genetics. The use of numerical methodologies found justification in many such projects. The emphasis was on the body politic, where diseases of body and psyche could be controlled at the level of populations and political policy.

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It is therefore imperative that we assess the effects of statistical thinking on our understanding of medicine and of spaces of control of the dying. After all, a kinder and gentler medicine would eventually turn to both psychology and the social sciences in the idea of a biopsychosocial medicine. Social scientific investigation, then, has a role to play, both as the universal category against which the individual is measured and as an apparatus utilized to deliver new forms of care. Yet it also had a role to play in shaping our understanding of living and dying well. As noted by John Milbank, the history of the secular state has been about the “ ‘bodily’ mediation between the unlimited sovereignty of the State and the self-will of the individual.”91 The space of the body politic is the space of a different kind of efficient control. political arithmetic, statists, and the disciplines

Numerical statistics as a field exploded in the late Victorian period in Britain, but our trust in numerical assessments clearly predates the 1900s.92 Theodore Porter, Sarah Igo, Alain Desrosières, and John Milbank, among others, have shown in their historical and conceptual analyses that the rise of the social or human sciences means the creation of social or psychological objects in a complicated dialogue between theory and practice, ideas and numbers, and scientific and political structures.93 It is the relationship of the scientific to the political that most interests me, and the political move of the human sciences that consists of claiming that there is nothing political in their scientific descriptions, whether these involve words or numbers.94 Theodore Porter notes that the term Statistik was first used by Gottfried Achenwall in 1749.95 Yet in Germany it had little to do with numbers; instead, Statistik, according to Desrosières, expresses a synthetic, comprehensive will to understand some human community (a state, a region and later on a town or profession) seen as a whole, endowed with a particular power, and describable only through the combined expression of numerous features: Climate, natural resources, economic organization, population, laws, customs, and political systems.96

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Thus, Statistik is no less a description of the state than were the descriptions of early epidemiologists, noted by Foucault, who classified disease according to a city and a year.97 In short, German statistics, as well as its French counterpart, was primarily a descriptive endeavor to provide a comprehensive picture of the dominion, that is, of the state of health of the body politic, to its ruler. Statistics was originally a literary picture, a prosaic description of the state. In Britain, however, the discipline of describing the state numerically predated the German Statistik by about a hundred years. The English statisticians John Graunt and William Petty began enumerating births and deaths in the realm. Their work came to the attention of Charles II when they suggested that the expenses of the state might be curtailed and that an estimation of wealth for taxation might be used to increase revenue.98 They called their work “political arithmetic.” Like Hobbes, who advocated a politics that was as certain as geometry,99 the political arithmeticians attempted to minimize error in prediction in those areas of political and economic life that lacked the certainty of geometry. Since rates of death would allow relatively accurate prediction of numbers of people who would die in any given period of time, the practice of enumerating and estimating the number of deaths was taken up by insurance companies, allowing them to estimate roughly how much and how often they would have to pay out claims in any given year.100 Over time, political arithmetic became an essential part of a centralizing bureaucracy,101 and by the early 1820s the discipline of political arithmetic took on the German name, Statistik. These early statisticians were called “statists” until the latter part of the nineteenth century because their work was descriptive of matters of state.102 As noted briefly above, the statistical norm came to be viewed — by Quetelet particularly— as an ideal-type and, in terms of human function, as the “average man.” For Quetelet, what would later come to be called the normal distribution with variability around the mean was a graphical representation of an ideal-type, with variability around this type. Variability was referred to as error.103 In fact, the normal distribution was originally called the Law of Errors, with the errors representing those who deviated from the ideal-type of the norm. Quetelet focused most of his work around social behavior, although, as noted

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above, he thought his methods had application in medicine. Individuals might show deviation from the norm; still, Quetelet was more interested in the laws that governed the norm. While Quetelet’s contemporaries would claim that deviation from the norm demonstrated the existence of individual freedom, Quetelet instead regarded variance as temporary and believed that, over time, the social laws would triumph over the so-called free-will behavior of a few.104 Social mechanics (mécanique sociale) and social physics (physique sociale) were regarded as the correlates to mécanique céleste, the laws governing celestial bodies.105 For Quetelet, the laws of social mechanics were related to the divine laws put in place by God. Lawfulness in statistical social science was “tantamount to godliness.”106 Thus, that which is named as the “social” is a variable object made up of individual objects, operating on principles independent of the wills of those individual objects. On Quetelet’s understanding, the mécanique sociale was headed progressively toward a glorious telos — an immanent telos— in which human society would be governed by social laws independent of individual wills. The force behind it was a social moral force.107 It is for this reason that Louis distanced himself from Quetelet; Louis wanted medicine to be a science of observation, not a social moral discipline.108 This idea of social law gradually shifted in relation to medical and biological thinking. For the nineteenth-century English historian Henry Thomas Buckle, the laws were no longer expressions of divine will but a kind of social determinism, not unlike Bernard’s physiological determinism. For Buckle, social determinism was an independent force, quite different from divine providence; it was a kind of social providence. Moreover, Buckle thought statistics and social law would allow for prediction in history.109 Thus, the territory marked out by statistics, the space of numerical and graphical tables, would provide the stable space from which the flux of time and history could be known. For Buckle, as for Quetelet, individual variation could have little impact on the social forces at work. Buckle’s thought shaped that of Herbert Spencer, whose evolutionary sociology further removed the notion of a divine providence and placed determinism more deeply into the natural. Spencer held that the death of the many in natural selection was redeemed in the law of averages, and would “purify society from those who are,

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in some respect or other, essentially faulty.”110 Those who deviate from the mean, from the norm, are faulty unto death. On the European continent, Émile Durkheim saw the invisible and determining hand of social law at work in the phenomenon of suicide, as described in his famous study. Although moral sentiment might, over a short period of time, reduce suicide rates, this reduction would disrupt the normal social forces, leading to a ripple effect in which, at some future time, more suicides would result, returning the numbers back to the normal rate of suicide.111 Prediction as to rates of suicide, along with rates of illness and death, was useful in calculating insurance claims and payouts. Thus, actuarial science was central to the development of statistical methods. The numerical method also developed as sophisticated statistical methods were applied to new domains, such as psychology and other human sciences.112 When statistics as a robust science took off in Victorian England, its success was intimately related to the work of Sir Francis Galton. A major pioneer in modern statistics if not its father, Galton was also the single most ardent supporter of eugenics; he held the first chair in eugenics in a British university. His eugenic philosophy was inextricably linked to the work of his cousin, Charles Darwin. Of course, Darwin’s work is philosophically linked to the rise of naturalism in Europe — natural selection being the most obvious instance of Darwinian naturalism. An idea current in Darwin’s day was that nature was a transcendent force, occupying a godlike position and directing evolution. Thus, the term “selection” designated the agency of this “nature.” Those that are killed cannot reproduce. Darwinian thought was also linked to the violence of the state of nature as articulated by Hobbes. The process of natural selection is nature’s means of ridding the world of less than adequate living beings. Life is short and brutish, and nature selects those who are fit to survive. In addition to Darwinian naturalism, Galton’s work was informed by the Romanticism of the early Victorian period with its link to middleclass egalitarianism, which is opposed to the elitism of tradition and nobility.113 Galton was not so much concerned with the “normal” as with variation. He was also more interested in heredity than in any sort of social mechanics or social laws. He read the biological as more important than the social; biology was the origin both of social relations and

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human character, in Galton’s thinking.114 These biological views combined with Galton’s social egalitarianism in his theories of heredity. For Galton, heredity was determinative of human features, such as intelligence, but hereditary intelligence could also be guided, leading to the belief, common in his day, that control could be exerted over “natural” selection for the breeding of a heartier stock. Thus, a good government might coax the “natural” and biological along through policies that promoted the efficient achievement of survival by individuals and societies who would be better fitted for social functioning. Good government might proactively assist nature, and government might be able to reconstruct society according to statistical and therefore scientific principles.115 The powers of the bureaucratic state could be deployed to efficiently minimize state costs, while at the same time maximizing the breeding of the better classes and inhibiting the breeding of lesser classes.116 This legacy of breeding of better classes would spill over into the American psyche and was manifest in the famous 1927 Supreme Court case of Buck v. Bell, upholding compulsory sterilization of the “unfit.”117 Galton also believed that his statistical science would uncover certain subconscious behaviors of individuals. He can be considered the father of modern statistical psychology, and his statistical methods shaped the burgeoning discipline of psychology. He held that mental processes could be “dragged into light, recorded and treated statistically, and . . . the obscurity that attends the initial steps of our thoughts can thus be pierced and dissipated.”118 He was a central figure in arguing for ordinal measurement and ranking of desirable human features, even if some could not be measured outright, and this drive for ordinal measurement became apparent in social and psychological surveys.119 Galton was convinced of the benefit of biometrics in defining differences in race and intellect, among other things, and, in the Anglo-American tradition, the application to intellect sealed the relationship of psychology, sociology, and statistics.120 Faith in the power of statistically controlled surveys and other studies has given rise to such things as IQ tests, the Texas Revised Inventory of Grief, and RCOPE, a tool for evaluating religion as a coping mechanism (I examine the latter two in chapter 8). In Europe the traditions of inquiry into both psychology and sociology were guided less by British empiricism and more by the rational-

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ist and other philosophical tendencies of the continent.121 European critiques of Comtean positivism took seriously the contribution of the observer to the observed, of the determining to the determined. Not surprisingly, the antipositivist stance took on a Kantian and then a neoKantian form and developed in parallel with other philosophical schools of thought in the mid-nineteenth to early twentieth century. Thus, we see the influences of Durkheim, Franz Brentano, Wilhelm Dilthey, Max Weber, and Edmund Husserl, to name a few, on the social sciences.122 Above all, in our brief survey of the rise of statistics, we find an emphasis on defining things — bodies or psyches — for the purposes of control. These bodies and psyches are defined with respect to a social norm, which is taken to be a universal norm, against which the individual is both measured and, as measured, is also shaped. Whether the methods be narratively or numerically descriptive, various new entities are defined, operationalized, and measured for purposes of helping “nature” along for the good of the body politic. Thus, it is clear that the social dimension under the guidance of statisticians and statistics acts as an efficient cause in human living and dying, for the betterment of society. When the head of the king is lopped off, power moves into various social institutions. In the social sciences and medicine, then, power is dispersed away from the government and moved into extragovernmental structures of governance. It is placed in the hands of the doctor, the psychologist, the social worker, or (most recently) the spiritual experts, who provide care to bodies and souls in “social contexts.” Thus, the governance of the body and soul becomes more subtle because it is less overt; it is almost unrecognizable as power because it has been internalized. It resides in the hands of the helping professions, those whose disciplines care for people, both body and soul. Or, as Foucault might say, these professions exert disciplinary power; they discipline the body and soul as a prior cause in the chain of cause and effect.

t he  p o l i ti c a l  s pa c e  o F M edica l sc ho ols

It is clear from the thrust of my arguments above that there is a tension between the explanatory science of physiology and the evidence-based, probabilistic science of the numerical method. This tension persists

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today and is controlled by the power of the clinic as it is constituted in the medical school. The explanatory science of physiology was able to win the day for use at the bedside of all patients, but by allowing statistical and probabilistic thinking to reign over other areas in which the medical institution might wish to have sway. Physiology gave lawlike information for individual diagnoses, whereas the use of statistics changed medical practice at the level of the institution. The use of the less exact social sciences also gave power over aspects of the political body through the pursuit of public health and psychological and social assessments. A structure of governance was needed to manage the tension between these two distinct kinds of medicine, and that structure today is the medical school. There can be little doubt that Bernard’s influence, both in physiological research and in methods of experimental medicine, extended well into the twentieth century. His mechanistic view of physiology became the foundation for mechanical replacement of organs. Statistics had influence as well. The notion of bringing clinical epidemiology to bear in treating an individual patient took off with evidence-based medicine. The tension between the basic sciences, such as physiology, and the statistical sciences, as used in psychology, sociology, and finally in EBM, was managed and mediated by the institution of the medical school. This mediation can be seen in the reforms that took place following the publication in 1910 of Abraham Flexner’s report to the Carnegie Foundation, entitled Medical Education in the United States and Canada.123 Flexner notes in his report that medical education in the United States and Canada had undergone several stages. He draws conclusions similar to those of Foucault in examining the development of medicine in France. Most practitioners in the early part of the nineteenth century were trained in apprenticeships. This training moved to a series of poorly thought-out schools, according to Flexner. These schools taught dogmas and not the laboratory (read: experimental) medicine of anatomy, physiology, pathology, and therapeutics. In response to these defects, Flexner calls for a marriage of science with apprenticeship.124 “The apprentice saw disease; the didactic pupil heard and read about it; now once more the medical student returns to the patient, whom in the main he left when he parted with his preceptor.”125

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Flexner ranks the sciences in a manner similar to that of Bernard. The medical sciences proper are “anatomy, physiology, pathology, and pharmacology,” and these are dependent on biology, chemistry, and physics. Thus, students should study biology, chemistry, and physics in the university and study the medical sciences in the medical school.126 Flexner ushered in what he calls the third era of medicine with his call for reforms in medical education. The third era understands that “medicine is part and parcel of modern science.” The body follows “general laws.” “The normal course of bodily activity is a matter of observation and experience; the best methods of combating interference must be learned in much the same way.” Thus, the scientific way of knowing must move into the medical school, and it must become the clinical way of knowing. Again, not unlike Bernard, Flexner observes that “[g]ratuitous speculation is at every stage foreign to the scientific attitude of mind.”127 Yet, like Louis, Flexner notes that “[m]odern medicine deals, then, like empiricism, not only with certainties, but also with probabilities, surmises, theories.” It strives for certainty, but modern medicine knows “where certainties stop and risks begin. Now it acts confidently, because it has facts; again cautiously, because it merely surmises; then tentatively, because it hardly more than hopes.”128 As Flexner argues, The empiric and the scientist both theorize, but logically to very different ends. The theories of the empiric set up some unverifiable existence back of and independent of facts — a vital essence, for example; the scientific theory is in the facts — summing them up economically and suggesting practical measures by whose outcome it stands or falls. Scientific medicine, therefore, has its eyes open; it takes its risks consciously; it does not cure defects of knowledge by partisan heat; it is free of dogmatism and open-armed to demonstration from whatever quarter.129 Thus, scientific medicine (physiology and the basic sciences) and clinical medicine (probabilistic science) are to be linked in the new medical school. Flexner points out that the clinical method is very much like the scientific method: One must hypothesize, gather data, and refine the hypothesis until one arrives at the fact of the disease.130 Thus, even clinical medicine has the spirit and methodology of science.

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Foucault maintained that in France of the early nineteenth century, the clinic was the political space where the medicine of forms, public health, and anatomic pathology were held together in spite of their differences. Flexner in the early twentieth century urged that the medical school should be the space where physiology and observation are held together. Moreover, On the pedagogic side, modern medicine, like all scientific teaching, is characterized by activity. The student no longer merely watches, listens, memorizes; he does. His own activities in the laboratory and in the clinic are the main factors in his instruction and discipline. An education in medicine nowadays involves both learning and learning how; the student cannot effectively know, unless he knows how.131 According to Flexner, the tying together of the academic scientific side of medicine — which may be prone to dogmatism — and the clinical apprenticeship of observation — which is prone to unthinking empiricism — are done in the unique space of the medical school. The clinic, now in its guise as the medical school, is still that political space where warring parties are held together, where patient, master, and pupil meet together, where the disease is seen and said, where language and gaze exhaust the disease, and where certainty is possible. There is no remainder. The French mantra of “read little, see much, do much” becomes the medical educational mantra of “see one, do one, teach one.”

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Transition One

I have argued that the medical school, where master, student, and patient encounter one another, is constituted by political agreements. Here, warring notions of science and practice are wedded together, and differences in ideas, however well or poorly thought-out, are minimized. Medicine’s pragmatic attitude has become thoughtless, in a way, because the two main branches of modern medicine discussed in the last chapter — physiological and statistical — have hobbled together practices that are aimed at their own practicality.1 They are alike in that both deploy a metaphysics of control, of efficient causation, where efficiency is their highest value; efficiency is aimed, for good reason, first at the management of bodies and psyches and, second, at the management of the body politic. Several features of Claude Bernard’s work in the nineteenth century are interesting in this regard. He casts the boundary between the interior and the exterior of the living organism, which is no doubt a biological feature, in political terms, in terms of freedom and in terms of an inside and an outside with well-developed borders. He describes disease processes and therapeutic remedies in martial terms: organisms invade the body; we declare war on cancer. The more secure the border between the interior and the exterior, the freer the organism, as Bernard

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explicitly declares. This border protects the life of the organism and creates the conditions of possibility for freedom. The experimenter, however, must penetrate that border and invade deeply the interior space of the organism. The purpose of the physiologist is not to find life; seeking life, I maintain, would require the search for forms and first causes, which are not approachable by the human mind. The border is penetrated to cause death, to manipulate matter, and thereby to think of life in terms of proximate efficient causes, of the forced movement of material reality. Knowing, then — scientific knowing — is an act of power. In order to know its object, the subject — the scientist, the one who knows — must invade the animal and open it to her knowing. She must stop the brain from functioning and observe the effects on the body. The animal must be taken apart and sacrificed.2 Its flesh must be tattooed, stained, irradiated, or covered over with various dyes or fluorescent chemicals so that its truth can be seen by the subject, the observer. Of course, the whole purpose of these experiments in physiology is the understanding of the complicated motion of animal matter, that is, “life.” The goal is to understand that which resists death, at the cost of causing death. The experiments are based on a utilitarian calculus aimed at an immanent effect, namely, a betterfunctioning life. Yet the condition for the possibility of this knowledge requires the placing of the living being under the control of the observer, thereby threatening the life of the living being. In physiological research, the animal’s physiology must be manipulated to keep it from dying so that observations of its motions can be observed. Even if directly killing the animal is not part of the scientific protocol, the animals are often killed, sacrificed at the end of the experiment. Death is the result, the terminus, of the experiment, even if not its telos. Death is the acceptable byproduct of knowing, justified by a utilitarian calculus. The scientist has to stick electrical probes into the animal body in order to measure conduction along nerves. She has to cannulate its heart in order to measure filling pressures, muscular stretch, and cardiac output, before she can produce the Frank-Starling curve; and she does this in order to say how all hearts behave. She has to violate, to coerce, to categorize, and even to kill the animal in order to know what she desires to know. The object of investigation — the living being — must become what it is not

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in order for it to be known. The animal is subjected to the manipulations of the knower, all justified for the good of bodies in the body politic. With the rise of physiology, it requires very little imagination to realize that a dead, nonfunctioning organ can be replaced by another dead, nonliving machine. A mechanical heart can replace the dead heart of a patient. A mechanical lung can resume respiration and ventilation for the dead lung. A mechanical kidney can take over the regulation of the mineral electrolytes and the disposal of toxic chemical metabolites. A nonliving machine replaces a nonliving organ. The harvesting — or, the now preferred term, the procurement — of organs from the newly brain dead or those who are dying allows failing parts to be replaced. Thus, medicine, insofar as it seeks to be scientific, studies animal function by stopping it. The function of the body-machine is lifted out of the messiness of human purpose and meaning; meaning and purpose become part of the cultural attribution placed on the mechanism. Meaning and purpose are post hoc additions to the mechanism. On this model of medicine, the doctor-patient relationship is not unlike a subject-object relationship. As Foucault pointed out, the person suffering disease is the absolute subject of his disease, in the sense that he is subjected to his disease. He is also patient, in the sense of being a passive sufferer, under the ravages of his disease. Yet in the clinic he becomes the object of analysis and inquiry. He is passive not only to his disease but to his savior, the doctor; the doctor’s agency — the subject pole in the subject-object relationship — masters the status of the patient’s body — the object pole. The patient is questioned by the doctor in much the same way that the corpse is questioned by the anatomist, or in much the same way that the functioning body is questioned by the physiologist. As Foucault realized, in the clinical examination, it is as if autopsy lines are mapped onto the body; the dead body becomes the epistemologically normative body, and medicine’s probing and penetrating gaze breaks through the border, rendering the patient, who had been the subject of his disease, an object. The doctor-patient is already constituted prior to the engagement as a subject-object. The person must become what he is not so that he can be known; that is to say, the person becomes likened to a dead being before the probing knowledge of the sovereign doctor.

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The patient as object is subjected to medical categories. As far back as Aristotle, knowledge is thought to be of the general, not of the particular. Knowledge is what is generally true. The individuality of the object must fade away so that I can know what is true about all objects within a class of objects, not just this particular object in front of me. In short, truth is what can be said to be the same for all objects within a particular class. The idiosyncrasies of a particular object are lost, are put aside, and are put to death, so that the object can be truly known. Particularity dies to universality. On the medico-scientific view, objects that have been categorized are exhausted, without remainder.3 Knowing, then, is a violent act; it is intimately tied to power and, as such, is a political act. Knowledge is the power to subject one’s object to one’s categories, and it is the power to control, to bring about the effects one desires in the world. Lest we think that the social or psychological sciences are more humane, let us remember that they also attempt to say what generally is the case for societies or psyches. Our clinical knowledge is always that of a subject who encounters its object. Even when we attempt to view our objects adequately, they are still subjected to the categories of the biological, psychological, or sociological disciplines. The so-called human sciences such as sociology or psychology apply their discipline to the patient; one might say that they also “discipline” their objects. What could be more damning than to be pronounced depressed, as distinct from suffering depression, when one refuses to be categorized as such? Or to be labeled as having a narcissistic personality disorder, or to be named a pedophile or a sociopath, by the psychologist or psychiatrist? One can be declared defective when one no longer adheres to the approved functions of society, because if one has a different telos, one disrupts the smooth functioning of the social machine, the state. Psychologists or social workers merely have to find in the idiosyncratic behaviors of their object a pattern of recognition. They merely have to fit the particular behaviors into categories of behaviors in order to name this patient as defective psychologically or socially. They thereby can claim that they know a particular person, by reference to the general category, and can deploy that knowledge for the good of the particular patient; or is it deployed for the good of the body politic? One merely has to flip through the pages of past editions of the American Psychi-

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atric Association’s Diagnostic and Statistical Manual of Mental Disorders to find behaviors, such as homosexual activity, labeled as medically defective, or even to name one as a homosexual — a new object of knowledge, as Foucault calls it.4 Although homosexual behavior has now been declared nondefective, this very point illustrates the political dimension of the social and psychological sciences. The defining of normal behaviors, the categorizing of behaviors according to normative (norm meaning “law-like”) psychological or social science, is no less violent an act than the definition of abnormal behaviors. The psychologist or social worker has to probe deeply to capture one’s deepest memories or the hidden truths of the psyche. If a patient resists the probing, he is defined as being in denial about his depression or psychological traumas; and his resistance and denial are more evidence of his psychological ill health. “He must be hiding something from himself.” The health professional’s role is to help him to find it. Even if there are standardized criteria for naming some set of behaviors as disordered or diseased, some subject must pronounce that this particular and idiosyncratic object is of such a kind, and then this particular object’s place in society, in the polis, is changed forever. The old particular and idiosyncratic person is put to death and a new defective object is born. Eccentric aunt Betty becomes a manic-depressive. The law of errors, with its standard deviation from the mean — that is to say, the average man — becomes operative in society. Particularity dies to universality; the individual dies to the social. It is here, then, that medicine is a social practice. Bodily function, biological function, is ordered toward social function. I shall explore this idea in greater detail. For now, suffice it to say that one is diseased insofar as one’s social function is disrupted. Sometimes it is the biological function of one’s organs that disrupts social function; sometimes it is the psychological features of one’s life that disrupt social function. Beginning in the 1970s, when the medicial establishment acknowledged that humans are not mere concatenations of biologically functioning parts, the clinic also embraced biopsychosocial, or biopsychosociospiritual, types of medicine. Here too, medicine embraced efficient causality. Medicine, as a social practice, accepts the metaphysics of modern natural sciences5 and becomes the “standard bearer of western metaphysics.”6 As noted by Eric Krakauer, it is medicine’s nature to be prescriptive,7

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to seek to control the machine of the body or the function of the psyche, which always flourishes in a particular social setting. It is here that we see the predominant ethic of medicine — a utilitarian calculus, a numerical method — where the social good is the greatest happiness for the greatest number of living beings within the polis. The justification for opening and killing the living animal and the justification for psychologizing and medicalizing unhappiness or other behaviors are the same. We believe we can bring about good effects. A utilitarian ethics has only to look at the final sum of all effects, and if that sum is net positive, the net effect is deemed good. Or, as Alasdair MacIntyre has shown, we do not have to mourn what is lost under the modern moral calculus.8 Medical science’s metaphysics of efficient causation fits hand in glove with the ethics of utilitarianism. We should simply celebrate the net positive result. Therefore, we justify the violence of knowing because we believe that we can relieve the human estate of its frailties. The subject forces its object into its categories in order to assist it; yet in the process the person becomes patient, that is, literally passive to the one who possesses the power of knowledge. The patient, the object of medical devotion, is subjected to medical thinking for its own good. Without realizing it, medical thinking kills the particularities, the idiosyncrasies, the oddities of its object; since these do not fall into recognized patterns, they are lost in the great universalizing calculus. And it is all done for the good of the patient — for her own good. Sometimes we cannot recognize things about ourselves. We so inhabit our dogmas (or shall I say, our dogmas so inhabit us?) that to question our beliefs — those things that our time and our society have taught us to be true and good, and indeed beautiful — threatens who we are. We cannot see who or what we have become, because what we have become does not appear for us, does not make itself known, even while what we have become makes known all things that appear as objects of inquiry for us. This conundrum involves more than our inability to conceive the world differently. It is in part a Kantian point, namely, that we bring to bear something that contributes to those objects that appear as objects to us. It is in part the problem that the phenomenological tradition of philosophy attempts to overcome in the belief that by bracketing our theoretical perspectives, we can attend to the experience with-

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out the subject interfering with the phenomenon as it appears for us, and thus without making it into an object. We are left with a series of questions: Is it possible to conceive of a nonviolent form of knowledge and, therefore, of a nonviolent form of medicine? Or, is violence a basic feature of reality? In other words, can the physician heal without transgression?9 In considering these questions, I turn to the ways in which our medical knowledge shapes our care of the dying, first in the intensive care unit, where dead machines replace dead organs, then in the area of organ transplantation, and finally in palliative care. Medicine is a good, but of course it is not an unqualified good. I am not calling for the end of scientific medicine and of the technological or discursive practices that it has begotten. I am merely claiming that there are aspects to our practices, such as the political nature of science and the violence of knowledge, which we minimize, mitigate, and cloak. I am questioning medicine, perhaps in the same way that doctors question the bodies and psyches of persons suffering disease. It is no doubt uncomfortable for those of us who practice medicine to turn to ourselves, questioning our motivations and what lurks hidden beneath our practices. I am merely asking us to take seriously the idea that what we do is complicit with death and deploys a violence sanctioned by virtue of the politics we have created.

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Chapter

3

The Machinations of Life

Death in contemporary Western society is no longer an affair embedded in shared social contexts, from which it derives its significance. There are few cultural practices that prepare contemporary Westerners for death in the way they were prepared in earlier Western society, as Philippe Ariès has demonstrated.1 According to Daniel Callahan, our society does not know how to respond to a person who approaches death or a family experiencing the loss of a loved one.2 The problematic place of death in contemporary culture is due in no small part to the fact that we have become increasingly medicalized.3 And in typical modern Western fashion, death — like religion — is normally not a social matter but a private one. I have begun to trace how medicine contributes to the shifting place of death in society. Foucault points out in Birth of the Clinic that medical men robbed graves in order to save cadavers from putrefaction and to scientifically study the body frozen in death.4 Yet death as stasis is a very thin moment — a fleeting moment — in the history of a living body. Death is represented as an ideal-type, even for the physiologists who resisted the ideal-type of “the average man.” Vivisection, as noted by Bernard, is no different from opening cadavers.5 For Bichat, by stopping the movement of matter in the living animal, one brings “life” more clearly into focus. It did not matter that this ideal-type of the dead body was a 96

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figment of medicine’s imagination or that death, as thus conceived, was not a static reality on which to build scientific knowledge. As with all forms of nominalism, one establishes one’s ground in defining it. The dead body provided the ideal definition because in the dead body, matter has stopped its motion. One can map the features of the dead body over the living body for the purposes of knowing and controlling the living body, independently of cultural understandings of death. Moreover, since formal and final causation are nothing more than post hoc additions to the animal machine, life, as such, cannot have an intrinsic telos but only a terminus. Life begins and ends in nonliving matter. There is a paradox in all of this: the idea of life as locomotion of nonliving matter makes death nearly impossible because the failing motion of the material of the body can be replaced by more effective machines. On the metaphysics of contemporary medicine, the body is a perpetual motion machine, potentially living forever, as long as its parts are replaced. I have claimed that medicine’s epistemology of death and its metaphysics of efficient causation result in an ideology of life as a series of causes and effects, without purpose or final cause, that plays itself out in death. In this chapter, I show how this ideology of life creates the technologies of physiological functioning that culminate in the intensive care unit (ICU). These developments also have unintended consequences. People become caught in the dream that medicine can sustain mechanical life indefinitely. A metaphysics of efficient causation and an epistemology of stasis always result in a kind of violence, for one merely has to exert a greater force over the dying body in order to keep its matter in motion. The cold ground of medical knowledge — the dead body — and the cold efficiency of the body as machine return with a vengeance in the lives of patients sustained on the machines of the ICU. The automatic function of the machine resists death.6

T e c h n i qu e s  a n d  Te c h n oL o gi es  of s us Ta i ning  Life

Abraham Flexner’s influential 1910 report on medical education both prescribed and articulated the argument for intimately linking medicine with the laboratory. It is no accident that Flexner’s report emphasized

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laboratory medicine. This emphasis was in the air; Simon Flexner, Abraham’s brother, was the chief scientific officer of the recently established Rockefeller Institute for Medical Research.7 The triumph of mechanical medicine was nearly complete by the 1960s. The scientist in his lab coat had moved out of the laboratory and directly into the hospital. He carried with him the perspectives of the laboratory and a slightly different gaze. As noted earlier, Bichat stated that the clinic and science are wedded together: the scientific perspective was that of the clinical perspective. Several features of this marriage will become pertinent to the care of the dying. By the mid-1950s and 1960s, moreover, all overt philosophical discussion had faded from the pages of scientific research. The physiological work of both Bernard and Bichat in the nineteenth century, in comparison, is peppered with philosophical discussions about the nature of experiment and observations, the place of theory, the relationship of reasoning to both theory and observation, and notions about what constitutes human reasoning. In addition, the very objects of their investigation — organs, organ systems, life, death, and the material of human bodies — were all thought about in philosophical terms, even though Bernard excludes life and death as meaningful concepts.8 The fading of philosophy from scientific studies does not, of course, mean that these works are not animated by philosophical assumptions and metaphysical underpinnings, but instead means that scientific method and the objects of scientific investigation no longer need any justification by philosophy. Take the following quotation from a 1950s study on artificial ventilation as an example: From the physiologic point of view, the problem of manual artificial respiration presented 4 principal phases: 1) The ventilator effectiveness of the manual techniques in relation to the range of attribute of the thorax and lungs, in health and in disease; 2) the effectiveness of a given amount of ventilation in accomplishing gas exchange; 3) the optimal timing of the component fractions of each sequence of motions; and 4) the circulatory effects of the different procedures. In concurrent and integrated studies by 4 groups of investigators, these phases were given various amounts of attention.9

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A single quotation cannot prove the point, but throughout the article there is no philosophical speculation about what counts as life, nor is there any discussion about theory or human reasoning. There is also little discussion about the accuracy of instruments of measurement. Philosophical questions about life and death give way to measurement of mechanical life. I have chosen, first, to explore in some depth clinical and physiological research on two vital functions as they relate to the rise of cardiopulmonary resuscitation (CPR). I shall also explore the clinical implications of the ICU, because it is the space where heroic measures are carried out to sustain physiological functions of people who are dying. It should be noted that when I say “dying,” I mean it as a descriptive term. Often, today, we do not say that someone is dying unless we mean that medicine has given up on that person — an interesting phenomenon in its own right. The ICU has become so natural to our way of thinking that we do not say that someone is dying as long as we choose to intervene with technology in the hope that dying is potentially reversible, even if statistically that is unlikely. However, I am using the term “dying” to mean anyone whose physiological status cannot support life and who, without the intervention of intensive care, would die. In this sense, someone with sepsis syndrome, a potentially reversible process, is dying and would die, if not for the intervention of medicine. Thus, ICU care is a care of the dying with a hope of reversing the process. CPR is directed to the most acute failure of physiological functioning, namely, cardiac and pulmonary functioning. Cardiopulmonary arrest is, after all, the final common pathway to all deaths. Both cardiac and pulmonary functions are necessary to life and are two of the three organs of life studied by Bichat in his research on life and death. Moreover, CPR is the approach taken by physiological medicine to those who are acutely dying. The experiments described below were central in the development of CPR both in the hospital and outside of it. The first experiments that I explore were designed to intervene in respiratory failure. H. Schwerma and his co-authors set up experiments to find the best mode of assisting respiration/ventilation following respiratory arrest.10 In a previous study, these authors had shown that “the least variable and most propitious time to start resuscitation [on dogs whose airways had been mechanically obstructed by the researcher]

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was on the manifestation of the first gasp or evidence of terminal air hunger.”11 They set up two new experiments — one preliminary and one major experiment. Their previous study had not utilized a robust “end point”— the point at which resuscitation of the dogs was to begin after airway obstruction.12 The preliminary experiment was intended to define a more robust “end point” of “terminal air hunger.” In order to find some observable difference in the various modes of ventilation, a systematic way of timing the initiation of resuscitative measures was essential. The dogs must manifest a point at which they were as close to “death” as possible but not so close as to prevent successful resuscitation. The preliminary experiment, then, was necessary to make the main experiment more robust. The first attempt to define the new “end point” used twelve dogs, as described below: In a group of experiments on 12 dogs pentobarbital anesthesia was used, and the femoral artery cannulated for a blood pressure record, a pneumograph attached to the chest, and the trachea cannulated so that it could be obstructed precisely by the insertion of a stopper at the end of inspiration. The time of disappearance of heart sounds was recorded by auscultation with a stethoscope. When all the changes on the kymograms were analyzed, the time of their occurrence was so varied that a reliable ‘end-point’ could not have been arrived at without using some 50 animals.13 The detail of the description is focused on the overlay of measurement, moments of recognition of the presence of “death,” and the numbers of dogs needed to assure the power of the experiment. As implied by the last sentence, the experiment did not establish a new “end point,” and the data on the twelve animals are not presented for reader scrutiny. Thus, the researchers set out to repeat the preliminary experiment. They believed that it was the pentobarbital, a general anesthetic, that had been the confounding factor, making the experiment on the dogs unrevealing. “Accordingly, local anesthesia (1 percent procaine) was used in all subsequent experiments”;14 the protocol was shifted, despite the fact that the Council for the Defense of Medical Research had conceded the importance of anesthesia in animal experimentation in the

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early twentieth century.15 Thus, in nineteen dogs, the researchers repeated the preliminary experiment, this time with only local anesthesia. The researchers note that after the dog’s airway was obstructed, “[c]onsciousness was lost quite promptly”— but no actual time to unconsciousness was recorded —“and time to loss of corneal reflex was 1.75 minutes on average.”16 Apnea began at 129 seconds after airway obstruction, and post-apneic gasping began at 181 seconds, on average. Respiratory arrest began at 229 seconds and cardiac arrest began at 260 seconds, on the average.17 This experiment was designed to describe several key moments along the way to the death of the dogs. This successful preliminary experiment allowed the authors to define a good “end point” at which to begin their resuscitation measures. The “end point” in previous experiments had been focused on the “first terminal gasp,” at which time resuscitation was to begin. However, because in the preliminary experiment it was “less troublesome to observe the blood pressure,”18 the authors decided to use a mean blood pressure of 42 mm Hg (the average blood pressure at which the first terminal gasp began in the preliminary experiment) as the new “end point” to begin resuscitation. There is no indication as to what the experimenters meant by “less troublesome.” None of the nineteen dogs were resuscitated. In the next phase of this study— the major part of the experiment — the airways of 103 dogs were obstructed. When the dogs’ blood pressure reached 42 mm Hg, the obstruction was removed and resuscitation began.19 The results of resuscitation using various techniques were as follows: A total of 103 dogs were divided into five groups. In a control group of 22 dogs, the tracheal obstruction was removed and no other treatment was given; 32 per cent survived. Manual artificial respiration in air was given to a second group of 20 dogs; 35 per cent survived. Mechanical artificial respiration was given to the next three groups but air was the gas used in one group, 100 per cent oxygen was used in the next and 7 per cent carbogen in the last. The percentage of animals surviving was 75, 71, and 85 per cent respectively.

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The difference between 32 and 35 per cent survival on the one hand and 75, 71, and 85 per cent on the other is statistically significant. The value of 85 per cent survival, using 7 per cent carbogen, is not significantly greater than 75 or 71 per cent, since it could readily occur by chance.20 There is no indication as to what survival meant in this experiment. Were the dogs neurologically intact, or were there neurological sequelae? No indication is given. The conclusions are that mechanical ventilation, even with room air, is much more successful than nonmechanical, manual ventilation.21 The experiments settled the question about the best means to artificially ventilate patients who had suffered respiratory arrest. Mechanical success trumps the question of what their survival might mean, for example, whether there were other effects including neurological damage. These experiments could not be done on living human beings for ethical reasons. Researchers also understood that the applicability to humans of such animal experiments was being questioned. Thus, in another set of experiments, a different group of researchers used alternative subjects including “recently deceased, warm corpses, prior to the onset of rigor mortis.”22 This might be as close as experimenters can get to the target population of patients, namely, those who are dying after cardiopulmonary arrest. Archer Gordon and several coauthors “arranged with the hospital to provide prompt notice to the researchers of a preterminal patient. All cases of known preterminal pulmonary pathology were excluded. Otherwise the warm corpses represented a random sampling of the adult male and female deaths at the hospital.”23 In other words, doctors and nurses would notify the researchers of patients who were on the verge of death so that the researchers could be present to carry out the experiment. The researchers were called for “200 cases, but the data for only 109 are submitted” for analysis in the article. The other cases were “eliminated for various reasons, such as too rapid onset of rigor mortis, tuberculosis, arthritis, deformities and occlusion of the tracho-bronchial tree.”24 The point of this experiment was to establish the best means of manual ventilation with or without mechanically assisted ventilation devices. The data collected on the warm corpses was primarily about airflow rates, tidal volumes, and

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minute ventilation.25 The point was not successful resuscitation but the mechanical effectiveness of the interventions. Gordon and other researchers also performed a series of similar experiments on living human subjects, who were anesthetized and paralyzed.26 They published a comprehensive set of experiments that showed the efficiency and efficacy of the manual methods of artificial respiration. These experiments included studies of airflow patterns and minute ventilation during manual respiration of paralyzed patients,27 the effects of artificial manual respiration on circulation,28 the amount of energy expended by those doing the artificial manual respiration,29 and the ease with which nonexpert staff could learn the various modes of manual respiration.30 Again, the central questions revolved around the efficiency and effectiveness of the various techniques and technologies of artificial respiration, as well as the efficiency and effectiveness of the techniques on energy expenditure of the operators, and whether the techniques could move beyond the laboratory. In the 1950s, standards for informed consent and refusal in research were only beginning to be established. Nonetheless, it is odd that Gordon and his co-authors provide no information on the dangers of their experiments or on how patients were recruited. Yet these experiments were very dangerous; patients were paralyzed and intubated in the course of trying different ventilation techniques. The procedures also required invasive circulatory monitoring. The idea that experimentation, including vivisection for Bernard, should be done only on subjects who might benefit from the experiment was the minimal standard in the nineteenth century. Yet these twentieth-century experimenters did not raise a single question about benefit in their publications. Although this was not vivisection per se — the patients were not opened, after all — the experiments required dangerous and highly complicated techniques and procedures, which were clearly not for the benefit of the patient. The experiments on resuscitation had used “survival” of the dog subjects to decide on the success of the intervention, and the warm corpse and paralyzed subject experiments used the relative efficacy of air flow as the means to judge the best among several techniques of ventilation. The experiments on cardiac massage and defibrillation used as end points31 the electrical signal in the heart or relative blood pressures

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during cardiac massage.32 Whereas in the artificial respiration experiments described above, survival is not defined, in the cardiac experiments survival is not the end point at all.33 In each cardiac study, researchers induced cardiac fibrillation on dogs for various amounts of time. Their purpose was to evaluate whether applying Direct Current (DC) electrical shock to the chest wall of each dog was as successful at restarting a normal heartbeat as applying the DC shock directly to each dog’s heart muscle.34 A question was whether a normal heart rhythm could be reinitiated with a DC shock after thirty to forty-five seconds of fibrillation, or after one minute or longer.35 Another end point for these experiments was whether closed chest cardiac massage, that is, external chest compressions, could generate blood pressures high enough to sustain perfusion.36 The dogs were never fully resuscitated; once normal rhythm was restored, several more arrhythmias were induced and further shocks applied to the dogs. Again, the survival of the dogs was never discussed. There was a concerted effort to move rapidly from the dog lab to the patient’s bedside. In a 1960 paper, William Kouwenhoven, James Jude, and G. Knickerbocker briefly describe a set of experiments on “more than 100 dogs.”37 Again, a preliminary experiment, described in minimal detail, is followed by the researchers’ main experiment. In the preliminary study, a “safe and effective method of ‘massaging the heart’ without thoracotomy was developed. Adequate circulation for periods as long as 30 minutes was easily maintained with the dog in ventricular fibrillation. A closed-chest defibrillating shock would result in the immediate return of normal sinus rhythm in such animals.”38 Normally, one would think that “adequate circulation” means circulation sufficient to perfuse and oxygenate the brain, such that the dog survives without neurological damage. However, “adequate circulation” is not defined; it appears to mean that a blood pressure was high enough to be detected by the mechanical devices designed to capture blood pressure. This conclusion is not mere speculation, for these authors include the ECG tracings and blood pressure tracings for only a single dog. No data are given about how the more than 99 other dogs responded in this preliminary experiment. In fact, the actual data discussed are so minimal that it is difficult to judge the methods, the results, and the discussion of the preliminary experiment.

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The major experiment and longest part of the article is devoted to studying the ways in which circulatory support and DC electrical shocks actually work in human subjects. The main thrust of the preliminary experiment on the dogs seems to be that the use of DC shocks and chest compressions was safe for the dogs and therefore could be used safely on humans. The same scientists who had run the experiments on the dogs carried out the main experiment in the hospital. It was conducted over ten months on twenty patients. There is no indication as to how these twenty patients came to be enrolled. These researchers had marvelous success rates: “All 20 patients were resuscitated and, at the time of writing, 14 of them are alive without central nervous system damage and without undergoing thoracotomy.”39 All twenty survived the resuscitation effort — again no indication of what that meant for them — but at the time of writing, fourteen remained alive. No further information is given. The authors then explore five cases in more detail. Of these five, four were patients whose cardiopulmonary arrest was due to the use of anesthesia (peri-operatively); the arrest of the fifth was due to an acute myocardial infarction. These two mechanisms of cardiopulmonary arrest are now known to have the greatest success rates for CPR and DC cardioversion. In other words, these authors must have selectively combed through the subjects before choosing to use them as part of the experimental protocol, and they certainly appear to have selectively combed through the data set to find five patients with exceptional outcomes to justify their claims of success. However, these hospital end points, these end points used as indicators of experimental success, were different from those of the preliminary experiment. An exhaustive exploration of the history of the developments of technology in medicine is beyond the scope of my project. It is clear, however, that modes of technological development centered around vital bodily functions were central research topics in the 1950s and onward. Death-inducing procedures were initiated in nonhuman animals, and attempts were made, not necessarily to reverse the dying process, but to examine the use of various techniques and technologies in supporting physiological functions. In addition, humans were placed in very dangerous situations where death was mimicked through paralysis, similar to people who had stopped breathing due to disease. Certainly, researchers do not much concern themselves with legitimating their

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experiments philosophically; justification is assumed ethically, legally, and epistemologically, simply because the researchers have accurately detailed the mechanical features of the functions of ventilation and circulation and the success of artificial and mechanical means of sustaining bodily functions. Once material and efficient causation takes precedence, one only has to show effects that are consistent with mechanical function in order to show success. The spaces of the laboratory and the hospital merge, and laboratory experiments move seamlessly to hospital experiments.

T e ch n i qu e s  a n d  Th e  s pa c es  o f La bo raTo ry   a n d c L i n i c

Foucault, as discussed earlier, shows that medical perception shifted when it stepped into the space of the clinic, such that wherever pupil, master, and patient were gathered together, science and practice were closely linked. In like manner, wherever the physician-scientists went, the space of the laboratory went with them. The relationship between the clinic and laboratory becomes centrally important. The transgressions of the experiments described above are clear. As soon as vivisection began in earnest in the nineteenth century, people began to question it, particularly in Britain.40 Both the Royal Society for the Prevention of Cruelty to Animals and the American Society for the Prevention of Cruelty to Animals worked diligently for strict regulation of experimentation using animals.41 These animal-protection crusaders succeeded in varying degrees. All over Europe, normal protections afforded to animals were negotiated such that experimentation on animals could continue, basically unchecked.42 As proclaimed by Bernard, only scientists could judge other scientists; the squeamishness of society should not get in the way of noble research. In the United States in the early years of the twentieth century, a concerted effort to keep scientists in charge of policing animal research was made by several key figures in American medicine, including Walter B. Cannon, William Keen, Simon Flexner, and Harvey Cushing. They created the Council for the Defense of Medical Research, whose purpose was to monitor the activity of anti-vivisectionist groups and to counter

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their claims.43 Cannon called on laboratory scientists to police themselves and, in fact, went so far as to articulate a code of conduct for the treatment of animals.44 Thus, scientists worked aggressively to preserve the laboratory as an exceptional space where the hand of governmental regulation would not reach them. To achieve the goods of modern science, as understood by medical researchers, the space of the laboratory had to be separated from the space of society. The animal laboratory thus became a political space where the normal legal or ethical protections afforded to animals were suspended.45 In other words, it became a space of legal and ethical exception. Oddly enough, it is the regulation of the laboratory space — both through legislation and through self-policing — that creates it as an exceptional space. The same holds true for research conducted in the hospital. The politically and ethically exceptional space of the laboratory simply moved into the hospital and was extended to human patients. Hospital researchers, by virtue of the kind of science done within the bounds of the laboratory, are also exempted from the normal bans of cruelty to animals, including the normal bans that would not allow one to risk the life of a human patient in simulating death. Thus, the very conditions for the possibility of this research are owed to the politically exceptional space consisting of the laboratory populated by scientists; and like the clinic, wherever these researchers go, the research laboratory comes with them. While today’s scientists are no doubt more careful than their predecessors and are now scrutinized more rigorously, from both ethical and scientific perspectives, it is also clear that with greater scrutiny and regulation, the exceptional space of the laboratory and of hospital research becomes even more a politically defined space. Yet it is not only the political nature of the space populated by scientists that has changed. Something philosophically important is also at work. Today’s scientific methods might be more or less adequate to the scientific object and the scientific question to be answered. Today’s medical scientists, however, do not philosophically question what they do: they do not, for instance, question how method is related to the human mind, nor do they carry on discussions about the adequacy of the mind to the method, the method to the object investigated, or the object to the way that the object is known. All questions of correlation and causation are limited to efficient causation or skirted altogether. All their

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work is predicated on a philosophy of material reduction and efficient causation. Indeed, the very language of description itself is mechanical, as illustrated above. Thus, the mechanism of study relates to the mechanism of a world that is related to the mechanism of scientific description. The metaphysics of efficient causation — that is to say, the metaphysics of immanent causation — has triumphed in medical science. This triumph has resulted in an unquestioning view in which the machines of life — bodies — and the machines and techniques designed to support physiological function — technology — operate on the same principle. Success is judged in terms of mechanical success, when experimental measurements reach the same measurements of the control group (if there was one). These mechanical measurements are known through a mechanical methodological technique, in accord with scientific method. And the result for society is that important judgments, which have been politically constituted in the laboratory space, are now made because such cause-and-effect thinking has become the sine qua non of all medical research. Mechanical thinking has been elevated to the arbiter of all knowing. People who are dying look like broken machines; if we replace the broken or dead bits with other machines, then human life — now defined as human function — will have been restored. One could, without too much dissension, claim that the restoration of function looked like human life to the medical scientific mindset of the 1960s because human life had been reduced to matter in motion operating on laws of cause and effect. The various techniques and technologies developed in the exceptional spaces of laboratory and clinic were evaluated for efficacious and efficient deployment. There is another feature of these spaces to which I again draw attention. My discussion above of certain research publications on key experiments that would lead to various technologies and techniques designed to support physiological functioning is admittedly limited, but it is safe to say that the use of philosophical language is, for the most part, omitted. Or perhaps better, the philosophical dimensions are never made explicit. The various authors are not concerned with questions of philosophy of science, of first causes, or formal or final causes. They are not concerned with notions of life or death. They are not concerned with the relationship of “dogmatics” to “empirics,” or theory to observation. They move very quickly from animal experimentation to pa-

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tients in the hospital. Furthermore, it is unclear in the CPR/DC electric shock experiments whether they understand their intervention as research or as patient care. The two appear as one. These experiments do not speculate on the notions of science or human reason. Instead, they engage in a very dry descriptive process — a description that itself is almost mechanical; the goals of efficiency and effectiveness are presumed in all aspects of these experiments, and their “end points” are immanent to the framework of the experiment itself. In short, the whole research process has become reductive in a very mundane sense. Scientific method is assumed and not questioned as the best, if not the only, means of knowing. The adequacy of the method to the objects researched is, for the most part, accepted uncritically. Laboratory research and patient research are distinguished, yet treated as very close to one another. Conclusions are moved very quickly from the animal laboratory to the hospital laboratory, skirting questions of both ethical and scientific legitimacy. Results are combed through and designed to highlight the positive “end points,” such as the return of a certain heart rhythm in a dog, without a single mention of whether the dog survived, or, if it survived, what that survival looked like. However, what primarily concerns my investigation is not the fact that data may have been selectively chosen and presented; standards of research are relative to their historical circumstance. Nor is it my primary concern that philosophical reflection is absent, or that methodologies are not sufficiently robust. Rather, my point is that because physiological investigation moved away from notions of purpose (final causation) to notions of function (efficient causation), one only needs to show the return of cardiac function, or adequate ventilation, or respiration, in order to claim that one’s techniques are effective. One only has to show an “adequate” blood pressure, or the most effective means of airflow, to demonstrate success in the experiment. Thus, the questions put by these experiments either do not concern life or death, in the sense of human flourishing and meaningful survival and their opposites, or they substantially redefine these terms as efficient physiological function. The question put by these experiments is mere vital function, mere cardiac or pulmonary function; that is to say, mere biology or bare life. The return of these functions, however minimally supportive of meaningful life, is hailed as a great success. Furthermore, these kinds

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of successes, grounded in function, animate those who establish the intensive care unit and its methods of care for the dying. As we have seen, Bichat claimed that “[l]ife consists in the sum of the functions by which death is resisted”; for Bernard, “the words life, death, health, disease have no objective reality.” For these experimenters and others, life has become mechanical function, and it has no other significance within the space of the laboratory. Life has only a terminus, defined as the absence of function.

T he  s pa c e  o f  M e c h an i c aL  L i fe

Contemporary medicine is a medicine of technological innovation, where the machine of the body is supported by other machines, such as ventilators, cardiac defibrillators, artificial hearts, the organs of other people, or pharmaceuticals.46 The ability to sustain physiological function through electrical and mechanical engineering techniques led to the development of mechanical ventilation and the mechanical heart. Even modern pharmacology operates on a mechanical understanding. We do not need to rehearse here the rise of these technologies. It requires little imagination to go from the mechanical medicine of the physiological laboratory to the space of the ICU, where physiological function can be maintained without thinking about the purpose of this maintenance. Daniel Callahan has made the insightful observation that while no scientist will proclaim that she is on a quest for immortality, that quest is the case de facto.47 The quest for immortality has lost its otherworldly sense. It is a different quest from the one pursued by religion, for it is no longer a search for a life after death, but rather an attempt to maintain material life and function indefinitely. Although (in the United States) the National Institutes of Health (NIH) provide the main financial support for this quest for immortality, and the scientific laboratory holds the intellectual capital for this quest, it is the ICU that has created the illusion of individual immortality. Robert Zussman states that the ICU “is not a technology. It is a place.”48 True enough; the ICU is not a therapy or intervention. It is not a particular artifact or tool, and it does not itself support a vital

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body function. It is the place where all bodily functions can be monitored.49 It is a space of surveillance. As Zussman notes, the NIH defined the minimum technological capabilities of intensive care in 1983. Yet the minimum is exhaustive: A. Cardiopulmonary resuscitation; B. Airway management, including endotracheal intubation and assisted ventilation; C. Oxygen delivery system and qualified respiratory therapists or registered nurses to deliver oxygen therapy; D. Continual electrocardiograph monitoring; E. Emergency temporary cardiac pacing; F. Access to rapid and comprehensive laboratory services including but not limited to arterial blood gas analysis, electrolyte determinations, hemograms, measurement of cardiac enzymes, renal function studies, microbiological studies, fluoroscopy, and other radiologic studies; G. Access to nutritional support services to advise on both enteral and parenteral nutritional techniques; H. Titrated therapeutic interventions with infusion pumps; I. Based on determination of ICU patient composition, technological capability must be available to support therapeutic interventions that are commonly accepted medical practice. For example, an ICU that manages shock syndromes needs hemodynamic monitoring capability techniques to allow for the rational diagnostic categorization and subsequent therapy of patients with shock syndromes; J. Portable life-support equipment for use in patient transport, both within the hospital and for transfer.50 Note that the ICU does not focus on any particular disease, ailment, or syndrome; it is potentially the space for any patient with failing physiology caused by any disease. The ICU is primarily defined by the technologies within its borders. It is the space where technologies designed to support physiological function can be efficiently accessed. The ICU began as a place of close monitoring carried out by nurses.51 Or, rather, as noted by John Kinney and Henrik Bendixen, intensive care was originally more like “intensive surveillance.”52 Some writers have

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traced certain aspects of intensive care back to Florence Nightingale, for whom the focus was on nursing care and less on technological intervention.53 The status of such care was different in her time. By the early 1930s, doctors and researchers began to publish articles about their experiences in keeping critically ill patients in the recovery room — the first ICUs — following operations.54 These articles generally spent less time on survival rates of the postoperative patients than on the kinds of technology that were deployed.55 They also attempted to settle turf battles over the types of doctors that should be allowed to care for patients in the ICU, and required the renegotiation of various doctors’ relationships to the patient.56 In addition, numerous articles were published on the design and management of the ICU itself.57 So, the ICU is not a technology but the place where technologies are deployed. It is a well-demarcated space, set apart from the rest of the hospital or other institutions as a place where exceptional illness and failing physiological function meet comprehensive nursing care, ample surveillance, and extraordinary technology. It is a space bounded by an already technologically mediated stance58 toward physiological functioning, and it is designed with the imperative to intervene in a failing physiology. In other words, we might say, borrowing from Heidegger, that technology in the ICU does not merely consist of the instruments and machines but defines the stance already taken toward the body of the dying by the ICU.59 The ICU is a place for those who are dying. Not only are specially trained nurses, doctors, and respiratory therapists allowed to provide care to patients and to make decisions, but family involvement is limited in that family members are precluded from bedside vigils, except for certain periods of the day. The ICU is a socially constructed space in which various machines are deployed to assist the physiological functions of those who are dying. As noted by Sharon Kaufman,60 it is designed to move patients along in highly impersonal ways, at best back to the regular hospital room, where the patient’s health will be restored, or at worst to intermediate-level care facilities, where, depending on the patient’s level of functioning, families are persuaded to allow their loved ones to die. This description in no way denies that in the vast majority of cases, doctors and nurses attempt to offer kindness and humane touches to the highly machine-driven interventions of the ICU.

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Nonetheless, the ICU is a space where, despite the best efforts of the caregivers to humanize it, patients and families continue to come away feeling abused. The technological stance cannot but dominate. As noted by one of Zussman’s subjects, a young doctor, “In the unit [ICU], it is a little bit of a science project. . . . That’s basically what people are reduced to. It’s blood pressure, temperature, respirations, and the cardiograms.”61 In a way, the patient vanishes in every sense except as an object of technological monitoring and mechanical intervention. Zussman states, “Intensive care, in particular, is organized around a notion that medicine at its best — at its most heroic, its purest — is about physiology and physiology alone.”62 To quote another of Zussman’s subjects, “All we care about in the unit is to make sure somebody is alive,”63 where “alive” refers to physiologically adequate matter in motion. Zussman concludes that “if, in other settings, as medicine’s critics complain, the patient is reduced to a disease, intensive care physicians may focus on a particular physiological process in which even the underlying disease is forgotten.”64 Patient life is reduced to physiological function. Thus, both disease and patient disappear in the space of the ICU for the sake of mere vital function. Something else is also lost in the ICU; something else is hidden in this exceptional space. The technologies meant to support life also themselves hide death in replacing the functions of dead and dying organs. The coldness of the machines betrays the coldness of death, and the lives in the ICUs become distorted by the emphasis on efficient mechanism. Patients in the ICU often end up living lives perceived to be worse than death, with no hope of returning to a state of human thriving.65 In the ICU, it is exceedingly difficult to turn off the machines that are sustaining physiological function, because the ICU is designed to deploy just those technologies — to keep life going, where life is defined as nonliving matter in motion.

s o c i a L  ap pa r aTu s e s  an d  so ver ei gn  s u bj ecTs

The ICU, then, is a kind of social apparatus. Foucault defines a social apparatus as “a thoroughly heterogeneous ensemble consisting of discourses, institutions, architectural forms, regulatory decisions, laws,

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administrative measures, scientific statements, philosophical, moral and philanthropic propositions — in short, the said as much as the unsaid.”66 It is an entire system of apparently unrelated domains, each with some general expertise applied to a segment of the population. Foucault is also concerned with the heterogeneity of this ensemble and with both the discursive and nondiscursive negotiations that constitute the relationship among the heterogeneous forces.67 He calls the relationships of these forces a “formation,” “which has as its major function at a given historical moment that of responding to an urgent need.”68 The various forces in the ensemble enter “into resonance or contradiction” with others, forcing the renegotiation of their relationships.69 Each domain conditions and shapes the others; yet the highest value is the efficient functioning of the apparatus, and it is this that shapes the relationships. More important, the various forces that shape the social apparatus not only have histories but also create the social space within which different effects — both intended and unintended — come into being. No doctor or nurse intends for the person who is the patient to disappear in every sense except as material to be manipulated. The intensity of the drive to maintain function is an unintended consequence of the social and technological apparatus designed to sustain function and to treat grave illnesses. But at the same time, the ICU is not meant to sustain function indefinitely. It is also designed to efficiently move patients through its system. So, although the ICU is the space that effectively sustains physiological function, it does so in a certain state of meaninglessness. The meaningless space of the ICU can be tolerated by a patient or a family for short periods of time, but it is difficult to tolerate for long periods. This social apparatus is constituted by the research that has informed its technologies and the metaphysical assumptions that undergird the science behind these technologies. Moreover, the robustness of the scientific claims is bolstered by the social status of the researchers. As I have noted, much deliberation and negotiation went into shaping not only the technologies of the ICU but also its place within the fabric of the hospital and among the relationships of the professionals who live within its boundaries. The efficient running of the ICU depends on its architectural and organizational features. In addition, social workers and unit managers facilitate the movement of work and

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the flow of patients through the apparatus of the ICU. These different forces come to limit the kinds of decisions that can be made, and thus propel the patient or her family toward certain kinds of decision.70 Callahan characterizes the ICU in terms of its results rather than its structure. He argues that the ICU results in a technological brinksmanship. “[M]edical technology is pushed too far,”71 crossing a line, which results in harm to individuals. He defines brinksmanship as the effort to get “as close to that line as possible before the cessation or abatement of treatment.”72 Thus, with medical technology we work aggressively to maintain physiological function, and then abruptly we “just as boldly . . . halt life-extending treatment.”73 Callahan concludes that this strategy “assumes an ability to manage technology and its consequences with a delicacy and precision that medicine simply does not possess,”74 and, I would argue, can never possess. Callahan’s assessment has a certain kind of autonomous agency in mind: an individual will that first embraces an all-out technological assault on the dying body in order to save it, and an equally strong individual will that can push back against the all-out technological assault on a body that is as good as dead. I am arguing that this autonomous individual agency is only partly able to counter the unintended effects of the ICU, because the ICU is governed, not by individual human agency, but by the agency of a social apparatus with a long philosophical history. As noted by Kaufman, no one questions the ICU apparatus until the patient stops moving through this socially constituted space. What drives patients toward technological intervention is not the paternalism of doctors, per se. Other domains of the apparatus, such as public policies, hospital policies, and health laws, also capture patients in other structures, in which certain options are framed as the most logical ones. During the 1950s, 1960s, and 1970s, the clearest answer for the care of the gravely ill and dying seemed to be the ICU apparatus. In other words, the social apparatus of the ICU frames the questions of life and death in such a way that one either embraces or rejects various technologies in the ICU. The social apparatus helps to shape the array of possible choices and decisions to be made. What I have claimed is that Callahan’s “technological brinksmanship” is already structured within the social apparatus of the ICU, which is informed by the metaphysics of contemporary medicine.

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Callahan makes a similar point, but with a slightly different emphasis: There is, in fact, a kind of inverse correlation between the language of meaning and moral substance — the content of choice — and an emphasis on the right to make a choice. As death has been drained of social meaning, the right to control the conditions of dying has been all the more strongly asserted. The demand for control, the unwillingness to accept death as it might present itself if untouched, is not only strong, it has become a passion for many. The only evil greater than one’s personal death is increasingly taken to be the loss of control of death.75 One of Callahan’s theses is that life becomes less meaningful once one moves from robust notions of meaning and purpose to the merely procedural emphasis of making choices and decisions. I am arguing that the social apparatus associated with the ICU limits decisions to the efficient procedural ethic. Moreover, as I will argue in more detail in chapter 4, the choice against ICU care and even the choice of euthanasia are both merely the binary opposites of the ICU technology itself. According to Callahan, through the ideology of choice one can assert control over something that is ultimately uncontrollable, namely, one’s dying. I am not saying that the ICU should not be utilized in order to keep people alive. I am arguing that in keeping people alive, it determines the options, most of which are disconnected from a meaningful structure. In other words, it is not merely the doctor’s will against the patient’s will that frames decisions; the social apparatus of the ICU has a directive force of its own. The ideology of choice — whether for life or death — creates the illusion of control. The only way to counter the imperative of the machine, it appears, is to overlay it with a different story, the story of the liberal, autonomous self — that is to say, a sovereign in command of herself and her body — who asserts her power over those machines of the ICU. Decisions and choices become the basis of the relationship between a doctor and the one dying, rather than the relationship being the condition for the possibility of decision.76 A refusal of care (read as refusal of technological life) is the antidote for the technological imperative. Its inverse

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is the insistence of a patient or family member on continuing technological support (an insistence on the technological imperative), even if it has little or no chance of success. Therefore, technological medicine appears to be rather arbitrary; it is subject to the directive, whether serious or whimsical, of the autonomous agent. Under the auspices of an autonomous decision, the story goes, the self establishes order on the meaningless state of physiological functioning, even without establishing meaning. Purpose or final causation is added back into the social apparatus of the ICU as something that the autonomous agent invests in the mere objects and facts of bodily function.77 Sometimes this story is characterized in terms of liberalism, sometimes in terms of humanism. The story goes that we invest the machine of the body — a brute fact of mere matter in motion — with meaning and significance. In claiming this, however, medicine also perpetuates the primacy of material and efficient causation; matter in motion can be invested with meaning by the human agent only after the fact. Thus, the patient’s attribution of meaning to the mere material of life becomes a thin veil covering over the brute facts of efficient causation. As noted by E. A. Burtt in 1925, the metaphysics of the modern physical sciences — which, I have argued, is the metaphysics of contemporary medicine — has pushed human notions of purpose and meaning to the side. Humankind with all of her “purposes, feelings, and secondary qualities was shoved apart as an unimportant spectator and semireal effect”78 of the great mechanical drama. The patient has become a manipulable object of an agentless social apparatus. On this version, we are bit players in a grand machine; we are determined scraps of the universe, shaped within the space of control created by, among other things, the ICU. There is no agency but the immanent movement of a purposeless mechanism. Thus, humanism intervenes by allowing a person to invest meaning into the machine. Liberalism — a form of humanism — assumes a sovereign agent that can push back against medical paternalism; it assumes an autonomous master that can push back against an agentless social apparatus. Both humanism and liberalism assume a self that exists independent of social influence, which can exert efficient mastery over mechanism. Even Callahan longs for a kind of self-management that would preserve us from getting caught up in the endless life of physiological function, or

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rather, an endless death of physiological function. The most effective agent to push back against the tide of the social apparatus is the one who consciously claims his own autonomy. The self becomes its ownmost authority in rejecting a life worse than death, either by embracing its own death through the rejection of technological life or by taking its own life. On this story, one becomes a sovereign subject of one’s death; both life and death become one’s possession, to either embrace or reject as one sees fit. As Foucault observes, the sovereign evidences “his power over life only in the death that he [is] capable of requiring” of his subject.79

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chapter

4

Embracing Death

No practitioner of medicine wants to turn a person into an object, an object that he subjects to technological manipulation in the ICU. Yet the pragmatism of medicine focuses on ways to manipulate the physiological body. Medical scientists of the 1950s and 1960s focused their research not on life in a meaningful sense but on life defined by the measures of physiological function. The power of technology renders the practitioner forgetful of meaning and purpose. For medicine, then, the important question becomes, Who holds the power over physiological functioning? This question is an “ethical” question. The debate in medicine has not been about philosophically exploring ways in which life as such might be meaningful; instead, its focus has been on who can invest meaning back into, and who should exert power over, the meaningless mechanism, and on how to carry it out. Several medical professionals have attempted to respond to the meaninglessness of technology deployed in the ICU specifically, and at the end of a life, generally. Take, as an example, surgeon Sherwin Nuland’s eloquent How We Die.1 Nuland, with mild disdain, declares that “[p]oets, essayists, chroniclers, wags and wise men write often about death, but have rarely seen it.”2 After all, philosophical or poetic musings on death are fruitless, because poets and philosophers do nothing; that is to say, they do not intervene in the realm of efficient causes. •    119

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Doctors — those pragmatists who have seen death and stepped in to stop it, or at least to delay it, or to make it easier — know death and can do something about it. Thus, Nuland narrates how we die. Armed with these metaphysical commitments, Nuland eloquently demystifies death, trying to bring into relief the only thing that is hidden to the medical mind, namely, the mechanism of our death, the “how” in How We Die. His objective is to make mundane that which is not part of our contemporary consciousness — the mechanism by which we will die. Against the musings of poets and philosophers, if we know how we die, then we can assert some sort of mastery over our death. The ICU has become our “high tech hope,”3 for it asserts a mastery over the failing mechanism, even if it merely hides death by replacing one mechanical function with another. Yet, as I have argued, it is precisely because medicine has thought of death and therefore life in purely mechanical terms that medical structures result in endless mechanical life in the ICU. For Nuland, the answer to death’s enigma is an intellectual apprehension of efficient causation — how, but never why, we die, which is also the mere inverse of how, but never why, we live. After all, in a world where formal and final causes are not engaged, there can be no satisfactory answer to the “why” question. In other words, Nuland’s task is to shape the ways in which I, as my own sovereign, imagine the ways that “I,” the subject of that sovereignty, will die by bringing into relief how I will die. Nuland’s expertise and authority as a doctor are grounded in the fact that he has manipulated the matter of the body, and his directive is to turn that manipulation back over to the patient — all for the good of the patient, no doubt. Nuland acknowledges that we may not be able to control the mechanism, but his response to the excesses of technological life is that we might be able to psychologically appropriate the failing mechanism by demystifying how we die. Daniel Callahan’s response, articulated in the last chapter, is skepticism about self-appropriation and the ability of the self to be in a position to reject technology, which must always be rejected at the right moment. Both Nuland and Callahan seem to cast the question in terms of control of the body, life, technology, and death, even if it is only by psychologically reducing fear (Nuland) and, if possible, by rejecting technology when the time is right (Callahan). Thus,

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both Nuland’s and Callahan’s responses are aimed at efficient control of how we die, even while they reject the efficient control of the ICU. I have already explored the ICU in the last chapter. ICU care perpetuates the idea that some sovereign — a paternalistic doctor, for example — stands outside the machine of the body and the machines of the ICU, directing those functions that maintain life, even if this is a life without meaning or purpose. A response of contemporary society, then, has been to remove that power from the doctor and to place it into the hands of the patient. The patient then becomes that oxymoron of liberalism: a sovereign subject, the sovereign who subjects his body and psyche to his own sovereignty.4 In this chapter, I explore how embracing or rejecting technology becomes “ethical” decision making and physician-assisted death becomes the purview of “ethics.” I argue that such decision is part of the metaphysics of efficient causation. Thus, I explore the drive to efficiently control medical death, first in the rejection of technology and second in the emphasis on physician-assisted death, which itself is efficiently controlled through the mechanism of the law. In the process, I shall also describe why we, in our time, no longer understand the distinction between killing a patient and allowing a patient to die.

t he  r e t u r n  of  t h e  W i l l

Robert Veatch noted in 1976 that medicine had shifted its focus away from the alleviation of disease and toward a focus on life and death, as part of a “biological revolution.”5 What Veatch calls biological revolution, I have been calling physiological and technological medicine. Veatch does not indicate when that revolution began, but he clearly sees its effects in the mid-1970s. He states: Efforts like these [attempts to control diseases through technology] make it appear that we are engaged in a struggle against death itself. Death, as never before, is looked upon as an evil, and we are mobilizing technology in an all-out war against it. If not death itself, at least certain types of deaths are beginning to be seen as

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conquerable. We are being forced to ask the question. “Is death moral in a technological age?”6 I have claimed that the rise of these technologies is due to an understanding of physiology — and therefore, life — as matter in motion. I have claimed that the dead body is at the epistemological core of contemporary medicine, paradoxically perpetuating the ideologies and technologies of life, and giving us the illusion that medicine is in a struggle against the notion of “death itself.” What is most important for my discussion and what makes death a moral question, on Veatch’s construal, is that death appears to be optional in a world where life is understood as mere function, as mere matter in motion, implying that efficient control can be applied by some agent to guide that motion. What makes death “moral” is that it becomes tied to human decision — human decision on whether or not to intervene in a failing physiological function. In the 1960s and 1970s, the question put before doctors was whether they could turn off the machines supporting patients’ lives. Veatch is claiming that, in the minds of medical practitioners, death became moral for the first time because we achieved the power to control it. For Veatch, then, death just is; it is the bald fact of matter in motion playing itself out. Deciding to intervene in the physiological mechanism amounts to investing the mechanism with moral significance,7 since one “ought” to keep the animal machine functioning and not allow death. The “ought” in Veatch’s is/ought distinction is a moral “ought,” making death a moral question and tying it to human decision. Veatch also implies that the inverse of ought — ought not — is the other side of the same “moral” coin. Moral activity is giving reasons for a choice for what ought or ought not be done. Veatch also seems to have in mind an older way of thinking about death. In the Western intellectual tradition, death is not morally but ontically evil. In the traditional formulation, the death of a person from a disease is always an evil, but a person’s death is only morally evil if human action causes the death of the person.8 Veatch, however, is less concerned with human action than with human choice; and it is the metaphysics of efficient causation that makes power central to understanding death in moral terms. According to Veatch, “This new poten-

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tial for controlling life means there is a new potential for controlling death. This technological power makes many deaths either tragic accidents or . . . intolerable outrages. Responsibility must now be borne for deaths that could have been prevented.”9 In other words, because of the technology that can sustain the efficient functioning of the body even if there is no hope of the patient getting off the machines, it therefore appears to doctors that they are complicit with death in turning off the machines of life. Doctors appear to themselves to be causing death in choosing to forgo or to stop treatment, meaning that their choice is a moral choice. Veatch’s solution is to shift the agency of decision making from doctor to patient. The moral question, then, is which agent efficiently maintains life through ICU care or efficiently causes death by its removal. Morality, on this view, is primarily about efficient causation through decision. Pope Pius XII addressed questions of a similar nature in the late 1950s, when he was asked to speak to a group of intensive care doctors who had posed questions about what sort of patient interventions they were morally required to continue.10 The doctors were concerned that they would be morally culpable for the deaths of patients on ventilators in ICUs if they removed the patients from the machines. The medical community seemed to believe that the technologies of life always had to be deployed. Pius XII concluded that this life-at-all-costs mentality is not Christian and that technologically maintaining life at all costs is not morally required. People do not need “permission to die.”11 For Pius, death is evil — ontically evil — and life is good — ontically good; because life is good, one ought usually to assist in the preservation of life. Yet for Pius, the goodness of life is only possible insofar as it is directed to the summum bonum, to a telos. As stated by Pius XII and later by John Paul II,12 life is a relative and intermediate good, not the highest good. Veatch’s analysis differs significantly. What seems implicit for Pius is explicit in Veatch’s position: the transition to technological medicine has led to excessive uses of technology, especially when life outside the ICU cannot be restored or reordered to some higher good. For Pius, life is a good because it has a telos that is already a part of the biological and social structure. That is, life is ordered to a final cause, which informs

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and orders biological or social functioning. In contrast, for Veatch, life and death are invested with moral significance only through the reasons we give for a choice. A person giving reasons for a choice might attribute final causes to the biological and technological machinery, but these final causes are post hoc additions attributed to matter, and the person who attributes significance to the matter is the efficient cause of continuing or discontinuing physiological function through her decision. The physiological understanding of life, informed by the material and efficient metaphysics of medicine, leads to the life-at-all-costs mentality, which has animated so much of medicine from the 1950s onward. Thus, mechanical intervention becomes obligatory in physiological medicine, for natural biological function is mechanical function. The mentality of life-at-all-costs, of life equivalent to material motion, begins in the guild of physicians, where the failing “animal machine” comes to be understood as replaceable by other kinds of machines.13 Oddly, the drive to keep people mechanically alive begins as doctor-driven, but in recent years it has been picked up by religious groups who claim that life ought to be sustained at all costs.14 (I return to this topic in chapter 7.) These groups have inherited from medicine the idea that life is morally required in whatever form life takes, with or without the assistance of machines and technology. When a metaphysics of medicine casts life in terms of efficient causation and matter in motion, such a medicine focuses itself on the forces behind material motion. Because these forces are not directed at some telos, they become violent forces, since maintaining matter in motion requires a constant deployment of prior causes and forces. Thus, patients and their families began to feel that they were subjected to medical interventions and to medical and mechanical forces that were unwanted and indeed dehumanizing, precisely because they lacked a telos. Veatch, among many others,15 casts the question in terms of choice and decision, or in terms of who has the power — the greater force — to deploy those forces or to push back against them. Thus, patient power is pitted against medical power. Scientific medicine felt compelled to deploy its powerful technologies to master the dying body and maintain life; patients (and their families) felt themselves (or their loved ones) to be patronized and dehumanized in these settings. Yet the response of handing over the power to the patient focuses merely

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on the issue of who should have efficient control over this technology and the body. There are several repercussions when the power of decision is transferred from doctor to patient, with its emphasis on decision and control. The Do Not Resuscitate (DNR) order has come to be seen as a triumph of patient choice over doctor paternalism.16 Patients who reject technological life, for a myriad of reasons, ought to be able to efficiently control the use of the technology. The inverse holds as well. Patients who desire technological life, even without hope of getting out of the ICU, ought to be the decision makers,17 efficiently controlling their own matter in motion. An increasing number of people claim that if a patient wants an intervention, such as CPR, he should receive it even if the doctors do not think that the intervention will work.18 In other words, by changing the agent who has the power to decide — a change from doctor to patient — we merely have addressed the question of who controls matter in motion. By placing the emphasis on power, agency, and sovereignty, the doctor and the health-care system become part of the apparatus of efficient control that consists of either embracing technology or rejecting it. In this social apparatus, doctors become cogs that turn the wheels of embracing or rejecting physiological functioning. Most recently, this sentiment has resulted in ideas that doctors cannot refuse to act even if the doctor finds the decision morally objectionable.19 On a view such as this, doctors do not engage in moral deliberation at all, because morality is merely choice, and the doctor does not choose. Veatch’s characterization of death as a bald, ontic fact without moral significance comes clearly to the fore here. Whether the intervention will bring about the desired effect is irrelevant if the prior force of a decision demands that it be attempted. On the one hand, in asserting her sovereignty over her body by rejecting technology, the patient reclaims a modicum of efficient control. On the other hand, because formal and final causation are invested in the functioning body after the fact, the dualism of will (power) and matter comes more fully into relief. The agent, as the sovereign, becomes the efficient cause of life or death. Like all sovereigns, this sovereign asserts authority over his subject and evidences his “power over life only through the death he [is] capable of requiring”20 by rejecting technology, or the life he is capable of sustaining by embracing it. Choice is efficient causation.

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a  co n f l at i o n o f  c a u s e s

Traditionally, all versions of assistance in someone’s suicide are illegal, tantamount to murder. In some jurisdictions, suicide itself is illegal.21 Yet when a patient asks a doctor not to intervene in her disease process due to some grave burden of disease or treatment, the patient is not thought to be committing suicide, nor is the doctor thought to be participating in murder. Pius XII did not regard the removal of the burdens of technology as problematic if the highest good, one’s telos, is unachievable. In such situations, the absence of or withholding of treatment is neither suicide for the patient nor murder for the doctor. On the other side of the coin, traditionally, if the patient intends to act to take his own life, the patient is morally culpable for his own death; similarly, if the doctor’s intentions are to kill the patient and if he acts in causing the death of the patient, even at the patient’s request, then that act is immoral and possibly an act of murder. Actions intended to take the life of the patient are qualitatively different from turning off machines or from never initiating treatment. The traditional distinction between killing a patient and allowing a patient to die revolves around the difference in the understanding of causation. On the traditional understanding, the entire metaphysical causal structure of a human action makes an act a moral act. On a different, contemporary understanding, however, the sheer presence of human decision is what makes an act a moral act. Several authors have argued that there is no distinction between allowing a patient to die and taking the life of the patient, either by prescribing medications that the patient takes, or by the doctor administering the medication himself.22 These authors have argued that an action normally allowed under the rule of double effect — giving doses of pain killers high enough to control pain, but inadvertently (unintentionally) causing death in so doing — is an act of physician-assisted death, sometimes called Voluntary Active Euthanasia (VAE). These authors make the claim that doctors’ intentions are often cloudy and that, in giving high doses of morphine for the purpose of controlling pain, the doctor knows that death may result. If this is true, they claim, the doctor is no less intending and therefore causing death than if the doc-

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tor had given the patient a poison to induce death. Their logic is that physician-assisted death ought to be allowed because (1) in removing the patient from a life-sustaining machine, (2) in giving the patient pain medication that is intended to relieve pain but will also hasten the patient’s death, or (3) in writing a prescription for a cocktail of medications that the patient, who intends to die, can administer to herself, or (4) in administering an intravenous bolus of potassium chloride, the physician intends and therefore participates in causing death. The problem with this logic is that it confuses intention, as traditionally understood, with making a decision that stands in a causal chain that may lead to the patient’s death, precisely because the authors are thinking of action strictly in terms of efficient causation. As a point of contrast, consider a contemporary defense of the traditional distinction between killing the patient and allowing the patient to die. Daniel Sulmasy notes that this distinction is not one that depends wholly on the physician’s intentions.23 Rather, the entirety of the human act contributes to the moral character of the action and to its moral assessment. Thus, traditional morality does not focus on mere choice or decision, nor does it solely focus on intentions or means or ends in its assessment of the action. On the traditional formulation of the distinction between killing a patient and allowing a patient to die, moral assessment of the doctor’s action requires examination of the action as a whole. Sulmasy also argues that all acts of killing under the traditional formulation are prohibited with very few exceptions, and that some acts of allowing to die are prohibited, while others are not.24 He admirably draws the distinction between desire, intention, and belief, which will be useful in my analysis: “I can . . . intend to do what I do not desire (for example, going to see my patients when I am tired and would rather not). I can desire to do what I do not intend (for example, I may desire to eat a high cholesterol diet but never form an intention to act that way lest my patients think me a hypocrite).”25 Moreover, one can imagine paralysis in acting if one believes that two actions are equally efficacious; after all, would a doctor have formed an intention of choosing one action over another, if both were in fact equally efficacious and he was ambivalent about choosing one over the other?26 Intention requires “something over and above belief. It requires commitment.”27

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While intention is important in the moral assessment of an action, it is only one aspect of the assessment. For an act of killing, the moral assessment is relatively easy to make. In the act of allowing someone to die, the moral assessment requires more work. According to the definitions and the logic of the traditional view, classifying an act as Killing* does not explain why the act is morally wrong. It only tells one that the act is morally wrong. The reason defenders of the traditional view hold that Killing* is morally wrong depends on a complex evaluation of the act, the outcome, the circumstances, and the intention.28 Thus, one can say that killing is morally wrong in most circumstances, but to understand why it is wrong, other features must be taken into consideration. In examining whether allowing someone to die is morally wrong, one must examine intention, the rationale of the action, as well as the material and efficient means of bringing the intention into effect, as well as the desired ends. In other words, the moral assessment of an action is not merely focused on the intention as the power behind the act (in the contemporary vernacular, “a choice”), but is focused on every aspect of human work that goes into an action, including judgments made about the circumstances and the effects of an action, as well as the purpose of the action. In short, one must adopt a holistic metaphysics of causation.29 Much of the confusion in the literature on the distinction between killing and allowing to die traces its origins back to this point, namely, when those who articulate an ethics of choice start to analyze traditional formulations of moral action.30 Some commentators, such as Timothy Quill and Howard Brody,31 question the importance of physician intention in human action and point out that intentions are often ambiguous. Yet it seems that they understand “intention” in a way different from the traditional understanding. For instance, Quill claims that a physician might write a prescription for medication sufficient to take the life of a patient but does not really intend that the patient take the medication. Quill argues that patients often do not utilize the medications to take their lives; they simply want to have the power to take their own lives even if they never do so.32 Thus, by his action of writing the pre-

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scriptions, the doctor may intend to re-empower a patient, by giving the patient ownership and choice over his life. Quill appears to think that if a doctor has qualms in writing prescriptions for the cocktail necessary for the patient to kill herself, he can claim that he did not intend to cause his patient’s death, because he did not decide to cause the death. The patient did.33 The traditional understanding of “intention” is very different from the understanding here. Decision (“intention” as understood in the contemporary sense) focuses on who is authorized to efficiently cause death; intention in the traditional sense takes formal and final causation into consideration, but even intention is only part of the overall assessment of the moral acceptability of an action.34 Because they have hung the moral assessment of the action on choice as the initial cause in the series of causes and effects, Veatch, Brody, and Quill, as well as many others, understand death as a moral question. As I noted, from the 1950s to 1970s especially, doctors seemed to believe that perpetuating life with the machinery of technology was morally required because life was merely matter forced into motion by prior causes. On Veatch’s interpretation, allowing a patient to die, therefore, became a moral question because one needed reasons to stop the therapy. Physicians were the agents who perpetuated life in the ICU. By changing the agent to the patient, the patient’s decision became the efficient cause of stopping treatment, or, if she chose to continue it, she became the efficient cause of continuing it. She became the agent or sovereign decision maker. This shifting in agency from doctor to patient places the doctor in a subservient relationship; the doctor thereby is precluded from refusing to assist the patient. He becomes a lesser cog in the wheel of efficient causation, the patient being the more powerful force causing her own death. Whether the patient chooses death by refusing ICU care, or chooses life by insisting on the use of technology, she is the force — the prior cause — behind the removal or deployment of technology. The inverse is also true; she may decide that death itself — caused by her own decision — ought to arrive now rather than later, deploying means to cause her death. The doctor now becomes the efficient cause of death in removing the patient from machines of life or in actively bringing about death.35 Quill, among many others,36 understands both the action to remove the patient from the machine and the action to

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write a prescription or to give a lethal dose of potassium chloride to be the same kind of action, because they originate in the prior cause of sovereign decision and end in the same effect, the death of the patient. The doctor is a mere efficient cause, a cog in the wheel of action, ending in the patient’s death.

f rom  e ff i c i e n t  D e ath  to  ef fi cien t s o cia l ap pa rat u s

In an older morality, one can distinguish between letting someone die, which can be a morally acceptable practice, and physician-assisted death, which can never be morally acceptable.37 As stated, these practices historically have been distinguished on the bases of traditional philosophical understandings of causation and moral assessment. In this regard, the question that forms the title of an essay by Franklin Miller, Howard Brody, and Timothy Quill is very telling and illustrates my claims about the hegemony of efficiency and effectiveness in the care of the dying: “Can physician-assisted suicide be regulated effectively?”38 Efficiency and effectiveness can be assured by the doctor and by the law. Miller and his co-authors shift the emphasis to the regulative function of the physician, who can efficiently assure proper authorization of death-inducing activity. The key regulative function of the physician is to ensure effective responses to a patient’s decision. The patient’s explicit request for death must be judged by the physician to be a free, autonomous request for death. In short, the physician — or a physician — will serve as the procedural regulator of the social apparatus of taking a patient’s life.39 The physician examines and regulates physician-assisted suicide by interrogating the patient’s motives and desires, ensuring autonomy in a sea of heteronymous factors. The physician acts as an efficient cause in checking the patient’s autonomy. The authors conclude that with the proper social apparatus in place, physicians can efficiently manage the checking of a patient’s autonomy. Efficiency extends not only to the doctor’s regulative role in assessing patient decisions for their rationality, but also to the killing action itself. In another essay, Quill and others provide a list of six approaches to patients who opt for noncurative therapy, that is, who decide to die.40 Four of these practices have traditionally fallen within accepted medi-

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cal practice, and two fall outside accepted practice. I briefly discuss the six practices to illustrate my point. 1.

Standard pain management: The patient receives quality pain management, including care that may shorten his life, but for which the physician has not traditionally been thought culpable. This employs the rule of double effect. 2. Forgoing life-sustaining therapy: The patient may choose not to undergo major curative interventions should he find them cumbersome. Physician involvement is necessary insofar as the physician must cease and desist. Time to death depends on the aggressiveness of the disease. 3. Voluntary Stopping of Eating and Drinking (VSED): The patient, of his own accord, chooses to stop eating and drinking. No physician involvement is really needed. This requires tremendous will power on the part of the patient, and thus it is clear that the patient chooses this method of his own accord. Time to death is anywhere from one to three weeks, and the lengthiness of time to death makes this option less than optimal because the patient’s clarity of cognition may “raise questions about whether the action remains voluntary.”41 Quill and others see this practice as potentially problematic, on the one hand because the doctor might undermine the patient’s resolve not to eat or drink by continually offering him food and drink; on the other hand, if the palliative care team does not continue to offer food or water to the patient, the physician cannot continue to ensure that the choice is autonomous. Moreover, the physician is not present (assuming the patient is at home) to continue the regulative function, and thus “palliation of symptoms may be inadequate, the decision to forgo eating and drinking may not be informed, and cases of treatable depression may be missed.”42 While I agree that many of these issues are important, the point remains that in Quill’s assessment, the physician must be present to assure the efficiency of the process of dying. 4. Terminal Sedation (TS): A continuous infusion of a medication, usually a benzodiazepine, is given in such quantities as to induce complete sedation. The goal is to increase the infusion until such time as the patient appears to be comfortable. Quill and others suggest

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that with TS, medical practitioners are in a better position to ensure that the patient’s decision is voluntary, given that the regulative aspects of most medical practices are extensive; this ensures that the patient is repeatedly questioned about her desire to continue with this intervention.43 5. Physician-Assisted Suicide (PAS): In this practice the physician writes a prescription for a large dose of barbiturates; the patient decides when or if to take them. These medications induce deep sleep and finally suppress respirations, resulting in death. The patient is the main actor here, as the physician plays a more passive role (though Quill and others state that the physician plays an indirect role — a confusion of traditional moral terminology).44 In addition to violating some traditional medical mores, this practice is “not always effective,” as stated by Quill and others, and potentially messy, as it may induce vomiting. Without the physician present, the patient’s family may lose heart or become frightened, taking the patient to the emergency room, where he may be resuscitated and receive unwanted therapeutic interventions. 6. Voluntary Active Euthanasia (VAE): Here, the physician takes a much more active role than in the first five approaches. After receiving a strong sedating agent, the patient receives a lethal dose of medication, usually a paralytic agent, possibly followed by a bolus of potassium chloride to stop the heart. “VAE has the advantages of being quick and effective.”45 Physicians again can ensure the voluntary nature of the act right up to the time of death, thus fulfilling the regulative function for the social apparatus. The most remarkable aspect of this list of practices is that the distinctions of traditional morality have vanished. There is no mention of intention or the moral integrity of the physician. There is little mention of patient intention, and then only in terms of decision and choice. The physician’s role is to ascertain that the patient’s agency, her sovereignty, is intact. The actions are only assessed in terms of the final effect — death — and the efficient means to achieve it. The moral distinctions between these six actions are removed precisely because Quill and others accept a metaphysics of efficient causation, where a dualism is set up between the decision (the will to power) and matter. On this schema,

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these practices are part of a continuum of comprehensive care caused by the prior patient decision and directed to the same final effect, death.46 The main concern of Quill, Miller, and their co-authors47 is the efficiency and effectiveness with which this continuum of care can be implemented, including both the efficiency of the social apparatus and the efficiency of the process of death-inducing activity. The effectiveness of death-inducing activity takes center stage. Doctors practice within a social setting, and they must be allowed to offer these options to patients through the mechanism of the legal system. Martha Minow, in her eloquent and astute analysis of the 1997 U.S. Supreme Court decision on euthanasia, asked an all-important question about causes and effects, a question that often gets missed in political discussions generally and the discussion on euthanasia specifically.48 As with all questions, the posing of the question itself defines the question and delimits the possible answers. Minow notes that though the question before the court in part dealt with physician-assisted death, it also dealt with the legal question of due process under the law, as guaranteed by the Fourteenth Amendment of the U.S. Constitution. This amendment in part states that no state shall “deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.”49 The plaintiffs had argued in lower courts that they were not receiving due process or equal protection under the law.50 The plaintiffs’ argument went something like this. There are two people with cancer. Patient A gets pneumonia. At first Patient A chooses antibiotics, but her condition deteriorates. She is placed on a breathing machine. While on the machine, Patient A decides that she does not want to live with the indignity and pain of cancer, so she asks the physician to remove the breathing tube and make her comfortable. The physician complies. The patient dies comfortably from her pneumonia. Patient B also has cancer. Patient B does not develop pneumonia. Patient B also decides she really does not want to live with the indignity and pain of cancer, so she asks her physician to write her a prescription for a cocktail of medications that will result in her death. The doctor is prohibited from doing so by law in most states. Patient B cannot have the assistance of her physician in helping her to die in the way that Patient A can. Patient B claims that she is being treated differently by the laws of the state.

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The Supreme Court ruled that Patient B does not have a constitutionally guaranteed right to assistance in her suicide/death; but on the other hand, the Supreme Court also indicated that should a state legislature grant the right to assistance with suicide, it may not rule it as unconstitutional. Thus, there is no right to physician-caused death under the Constitution, but a state might be able to grant that right and not violate the Constitution. This case demonstrates that the plaintiffs and their attorneys no longer understand the difference between allowing a patient to die and acting to assist the patient in her death. Minow’s essay also plumbs the depths of the questions that the court decided to entertain. Some justices saw the question put before them in terms of human liberty. Others saw it as a question of which governmental organization gets to decide whether there is a liberty to take one’s life — the U.S. Congress, the justices of the various courts, the state legislatures? Still another question entertained by the court was as follows: Is there a rational basis for the distinction between withdrawal of life-sustaining treatment and participation in suicide? Another was the familiar framing device used in medical ethics: the “Who decides?” question — the question of sovereignty and power. Minow’s analysis catches the justices vying with one another, clashing over how to frame the issue through questions, not just for this case but for future cases. Minow’s question was altogether different from the questions put before the Supreme Court, or perhaps better, altogether different from the questions used to frame the court’s opinion. Rather, the all-important question for Minow with regard to physician-assisted death is, Which lie do we countenance? On the one hand, should we countenance the lie that physician-assisted death does not occur? This lie effectively means that government — politicians, bureaucrats, policemen, prosecutors, and magistrates — already looks the other way in many instances of physician-assisted death. On the other hand, should political forces — forces that decide so many of the questions that frame our lives — countenance the lie that government can prevent physician-assisted death from becoming involuntary euthanasia, through efficient control of the processes of terminating a patient’s life? This question was similar to that of Miller and others in asking whether euthanasia can be effectively controlled.51

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Minow’s implied answer is very different. One cannot expect that a law prohibiting physician-assisted death (in the form of murder laws) will be effective at curbing it; but neither can one expect that legislation enacted to protect from prosecution those physicians who prescribe death-inducing medications will also protect vulnerable patients from physicians or from family members who are eager to help patients die. Given the choice between two lies, the next question is: Which of these two lies better protects patients from the medical tendency toward mastery of patients’ lives — a tendency toward which modern medicine has historically been prone? Robert Burt claims that when we attempt to deal with death in a rational manner, we end up exceeding the limits of reason because finally death cannot be mastered, even by reason.52 In the process of attempting to master death through rational discourse, we end up violating something different, or betraying other things held sacred. Death, despite all of medicine’s inclinations to the contrary, cannot be mastered technologically, discursively, psychologically, sociologically, or spiritually. When we do attempt to do so, Burt argues, it returns to haunt us. Take, for example, the inclination to master death technologically. With the rise of technology, we were able to prolong life mechanically. The use of technology makes rational sense. But then we found ourselves with patients sustained on balloon pumps and breathing machines, without hope of getting them off the machines, and we concluded that they were living lives worse than death. Death returned with a vengeance. We should treat death as the mystery that it is, Burt claims, rather than rationally attempt to categorize and master it. Death is an aporia; it defies all of our capacity to know and to intellectually or mechanically master it. Death is an insoluble perplexity. The lie that physician-assisted death does not occur is one with which we have been living for some time. This lie leaves open the possibility for judicious police investigators or prosecutors to turn a blind eye in those cases in which they judge that the circumstances, intentions, and means justify the physician’s action, and it allows discernment about those instances where prosecution is warranted. Investigators and prosecutors can exercise compassion as well. Should prosecutors doubt that they are in a position to make such judgments based on the

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evidence, then the courts deal with the question of whether a particular action is justified. This is in fact how it happens now, and it seems to me that the current system leaves enough ambiguity in place to allow judicious people in authority to navigate these waters. Even to draw attention to this lie makes many of us — modern, enlightened people bent on control — uncomfortable because our every inclination is to master life and death within the law. We live under the myth of efficient control, and to acknowledge that in life (and death) there are certain things best left uncontrolled makes us very uncomfortable. The other lie, to which Minow draws our attention, is that physicianassisted death can be controlled, and that in controlling it, nothing really changes in the practice of medicine. First, at a very naïve level, this lie suggests that involuntary euthanasia — the “nasty” version of euthanasia because it does not have proper authorization under the watchful eye of the doctor — somehow can be prevented. Take the British case of Harold Shipman as an example. Between 1977 and 1998, Shipman killed at least fifteen people in the course of his medical practice, most of them with terminal conditions. Dame Janet Smith’s report found that Shipman’s first victim, Eva Lyons, had terminal cancer. Dame Janet held that her death was a case of involuntary euthanasia.53 But her insight begs the question of whether laws protecting physician-assisted death would prevent involuntary active euthanasia. Shipman’s actions were those of a man who already stood outside the boundaries of the law and outside the boundaries of acceptable professional behavior. They were criminal, not professional, actions. He would not have sought to end the lives of his patients while staying within the boundaries of a law permitting physician-assisted death. If any of Shipman’s actions to kill were motivated out of compassion or care, then we have to ask ourselves a question that proponents of physician-assisted death simply dismiss and Minow rightly asks. Does the act of taking a life change the person who does it? At first, Shipman could have been motivated by a sense of compassion for the dying. A law set up to protect the vulnerable from involuntary euthanasia would not have stopped the likes of Shipman, who increasingly became more cavalier in his killing activity. It would be exceedingly difficult to make the claim that a law designed to control physician-assisted death would have led any sooner to Shipman’s capture, or the prevention of his actions.

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Thus, we must examine closely the purpose of any law that would legally permit PAS/VAE. It is to protect physicians from prosecution for murder or to protect them from liability for the death of the patient. These reasons were in part the motivation for the two cases brought before the U.S. Supreme Court in 1996. The plaintiffs had already died in both instances, but the cases were carried forward by the physicians involved so as to get definitive guidance from the courts on whether a person has a constitutional right to a physician’s assistance in dying. Moreover, the Oregon Death with Dignity act, which legally permits PAS, explicitly states that a participating physician has immunity from civil or criminal liability, or from professional disciplinary sanctions, because she has participated in PAS as laid out by the law.54 The Oregon statute sanctioning physician-assisted death deals for the most part with the procedure by which the patient’s primary physician, the consulting physician, and possible psychological or psychiatric counselors are to ensure that the patient is voluntarily requesting PAS. The request must be made in writing, and the written request must be witnessed by two people.55 The onus is on the primary physician to determine both that the patient is terminally ill and that the patient is acting in a voluntary and rational fashion. The law states: The attending physician shall: (a) Make the initial determination of whether a patient has a terminal disease, is capable, and has made the request voluntarily; (b) Request that the patient demonstrate Oregon residency pursuant to ORS 127.860; (c) To ensure that the patient is making an informed decision, inform the patient of: (A) His or her medical diagnosis; (B) His or her prognosis; (C) The potential risks associated with taking the medication to be prescribed; (D) The probable result of taking the medication to be prescribed; and (E) The feasible alternatives, including, but not limited to, comfort care, hospice care and pain control; (d) Refer the patient to a consulting physician for medical confirmation of the diagnosis, and for a determination that the patient is capable and acting voluntarily;

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(e) Refer the patient for counseling if appropriate pursuant to ORS 127.825; (f ) Recommend that the patient notify next of kin; (g) Counsel the patient about the importance of having another person present when the patient takes the medication prescribed pursuant to ORS 127.800 to 127.897 and of not taking the medication in a public place; (h) Inform the patient that he or she has an opportunity to rescind the request at any time and in any manner, and offer the patient an opportunity to rescind at the end of the 15 day waiting period pursuant to ORS 127.840; (i) Verify, immediately prior to writing the prescription for medication under ORS 127.800 to 127.897, that the patient is making an informed decision; (j) Fulfill the medical record documentation requirements of ORS 127.855; (k) Ensure that all appropriate steps are carried out in accordance with ORS 127.800 to 127.897 prior to writing a prescription for medication to enable a qualified patient to end his or her life in a humane and dignified manner; and (l)(A) Dispense medications directly, including ancillary medications intended to facilitate the desired effect to minimize the patient’s discomfort, provided the attending physician is registered as a dispensing physician with the Board of Medical Examiners, has a current Drug Enforcement Administration certificate and complies with any applicable administrative rule; or (B) With the patient’s written consent: (i) Contact a pharmacist and inform the pharmacist of the prescription; and (ii) Deliver the written prescription personally or by mail to the pharmacist, who will dispense the medications to either the patient, the attending physician or an expressly identified agent of the patient. (2) Notwithstanding any other provision of law, the attending physician may sign the patient’s death certificate.56 Thus, by ensconcing PAS in law in order to ensure that the patient’s decision is informed (and at the same time protect physicians), the

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legal procedure assists medicine in operationalizing death, by putting in place systems of efficient control. As noted above, the physician will manage procedural efficiency because physicians are the ones to define the capacity of a patient to make a decision about death. They also understand the physiological mechanisms of life and therefore the efficient and effective means of causing death. The law and medicine — doctors, consultants, psychiatrists, counselors, and pharmacists — thus combine to create an effective social apparatus, where death is the terminus. The law empowers medical personnel, primarily medical doctors, to ensure that the choice is genuine. And this brings us back to the idea that a properly authorized decision is what makes this kind of death morally acceptable. Minow eloquently warns of the subtle seductiveness of legalized PAS. Her warning is apropos. The lie that patients and doctors can be protected under law depends on the very idea that some line would remain between abuse and nonabuse in a regime permitting assisted suicide. The lie is the denial that such a regime reaches beyond vulnerable patients to all patients, dying or not; to all family members, self-serving or not; and to all physicians, those who endorse suicide assistance and those who do not. The option of medical assistance in dying would alter the menu for all involved. It would turn the continuations of living into a question, open for debate, doubt, and persuasion.57 Minow’s point is not merely a slippery slope argument, but an argument that this option reframes all options. In other words, a right to have a physician assist one in suicide makes staying alive a daily choice.58 Ensconcing death in law, then, does not merely allow a single patient at the end of her life to have a death that is well-controlled, efficiently monitored, and effectively executed. The option to assist in suicide will result in subtle changes that will exist subliminally, literally beneath a threshold of recognition of all concerned — patient, family, doctor — and not just those who might be engaged in dying, caring for a dying loved one, or carrying out the death-inducing activity. Living itself becomes an open question because all has been radically reframed; and the apparatus of control gives the illusion that all is well.

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Minow’s point fits my own thesis about the dominance of efficient causation in our way of thinking. The law efficiently ensures that the patient gets to decide who chooses to cause his own death. Just as, according to Quill, PAS and VAE are modes of physician-assisted death that ensure the efficiency and effectiveness of death, the law itself comes to assure efficiency and effectiveness of death. Even while it requires that other options, such as pain control or hospice care, should be discussed with the patient, the law nevertheless frames death as the patient’s clearest option. Consider the fact that as many as four professionals — the patient’s doctor, a second physician, a counselor or psychiatrist, and the pharmacist — have all been following the law. If they all affirm the patient’s decision, then it must be the correct decision. In other words, I want to suggest that the social apparatus confirms Callahan’s concern that the self is not in a position to know when to say, enough is enough. A law such as the Oregon statute assumes that death can be rationally chosen. The social apparatus confirms for the patient that his choice is rational and that his decision is a morally good one. Death becomes the most rational of choices because, in the efficiency of the social apparatus, death — the final effect of all causes and effects — is the focal point of the picture. Death, which had been hidden deep in the body, hidden by technological medicine, rears its head once again, this time in the machine of the social apparatus. Rather than being subjected to the sovereignty of doctors, patients are told that they are their own sovereigns capable of subjecting themselves to their own deaths, first by rejecting the machinery of medicine and, more recently, by embracing either Jack Kevorkian’s death machine — the thanatron, as he calls it — or the social machinery of legally sanctioned PAS. Thus, the issue is framed as a choice between a life without meaning in the ICU (or a meaningless life of suffering) and a death chosen and owned by the patient, who has been reassured by the social apparatus that her death is autonomously chosen and is therefore moral. The sovereign decision is therefore not really a decision welling up deep from within the self, but is instead molded and shaped by a medico-legal social apparatus. Death, and by extension, life that resists death, are fully ensconced in this apparatus. In the next chapters, I explore the repercussions of these ideas of sovereign mastery over death and its relationship to policy and law.

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chapter

5

Commissioning Death From Living Cadavers to Dead Brains

The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research published its findings in 1981 on the topic of brain death. The document, titled Defining Death,1 was the culmination of a long discussion beginning in the mid-1960s with the advent of cadaveric renal transplantation and ending with the commission’s recommendation of the Uniform Determination of Death Act. This act was accepted by every state in the Union in some version or another, either as a statute or in common law.2 I call the document a culmination not because it ended discussion about the question of brain death, but because it gave the semblance of finality on the question by virtue of ensconcing a definition of death in the law. The front cover of the commission’s report is illuminating. At first glance, the eye is pulled to a couple of bags — in the original, red on a blue background — hanging from an IV pole. These bags appear to be blood — the life blood. One’s eye is also pulled to a machine in the background, perhaps a ventilator, which is also red and, like the blood, sustains life. Two male figures in white — the doctors — appear to be leaning over a hospital bed. A female figure, a nurse, wearing an older-style, flowing nurse’s uniform, is standing at the foot of the bed. Or, is she •    141

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wearing a nun’s habit? On closer inspection, however, the hospital bed is not a bed at all; it is a coffin. The two doctor-figures leaning over a coffin might be priests administering the sacrament of the last rites. No one is visible in the bed/coffin; we see only the shell of the coffin. And the IV pole might also represent a cross. For the commission, the triad of lungs, heart, and brain on which Bichat focused translated into the functions of respiration, circulation, and control as mediated by the brain stem. The commission set out to

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avoid “arcane philosophical discourses,”3 and thus, it deliberately paid less attention to the higher brain, the space of personhood, than to the physiological characteristics of death. Its final report stated that the life blood and the ventilator are not what make one alive, but instead, it is the automatic function of the body made possible by the brain stem. I argue in this chapter that through a series of social machinations, death has moved more fully into the space of the brain. For the commission, this amounted to introducing a metaphysics of efficient causation in a document that supposedly avoided “arcane philosophical discourses” and whose main recommendation moved quickly into the law. I also explore the ways in which death, particularly brain death, has become part of the social imagination. Like Robert Zussman’s image of a patient who slips silently into the depths of the technological apparatus in the ICU4— and thus no longer appears as a human being but as a technological object — similarly, the newly defined brain-dead patient slips into the morass of technology, into a hospital bed, and into a hospital coffin.

Be f o r e  B r a i n  De at h

According to Julius Korein, as well as many others, technology itself creates the conditions for the redefinition of death as brain death: “Virtually all organisms (organ systems) are replaceable in man, with one exception, and that is the brain. The heart can be replaced by a pump, the kidneys by an appropriate dialysis unit, endocrine glands by hormonal replacement therapy, and so on.”5 Insofar as various bits of the mechanical body are replaceable by machines or other techniques, they are not central to defining either life or death. In a sense, then, death of the body is not possible because it has always been a lifeless mechanism replaceable by another mechanism. Our technology can maintain physiological functioning through mechanical control of the organ systems. If the only set of functions that cannot be replaced are housed in the brain, as Korein wrote in 1978, then brain death necessarily is death and ought to be the ground of the definition of death. Technology, then, necessitates the redefinition of death by proving what we have already known physiologically, that life is matter in mechanical motion.6

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Of course, the way in which technology changes medical thinking about death was noticed earlier. P. Mollaret and M. Goulon, in 1959, described a new category of living being, le coma dépassé—“the beyond coma.”7 In this new category of life, the heart continues to beat, blood continues to circulate, and respiration is maintained by the ventilator machine. It would take several years before medicine distinguished between the several brain states — simple coma, vegetative state, and whole-brain death — that in all probability made up le coma dépassé. Nevertheless, Mollaret and Goulon’s description was of something akin to brain death, of a life completely sustained mechanically. Yet it was not the fact that Mollaret and Goulon defined a new form of life that was monumental, but the fact that, in time, their definition would become synonymous with death. While whole-brain death has become “natural” to our contemporary thinking, this was not always the case. The term “brain death” does not appear in print until 1968, with the publication of a report by a Harvard committee titled “A Definition of Irreversible Coma: Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.”8 Brain death, as a concept, emerged slowly on the scene. Discussions of the way people have died following severe neurological injury date back to the latter part of the nineteenth century. Latenineteenth- and early-twentieth-century physician-scientists observed that after severe brain injury, the respiratory system failed prior to the cardiovascular system.9 Still, in no sense did these physiologists believe that their patients or animal subjects were dead, let alone brain dead. Thus, as noted by Mita Giacomini and Margaret Lock, brain death was not a concept that was entertained until after organ transplantation became more developed in the 1960s, when the new technologies of transplantation necessitated a new definition of death.10 Before new technologies complicated the question, death was reasonably simple to define, even though the practice of declaring death was itself rather more complicated.11 The cessation of all spontaneous cardiac function and of breathing defined death. However, historically speaking, the fear of being buried alive was real because the practice of identifying those who met that definition was less than perfect.12 Cessation of breathing is relatively easy to discern, but cessation of cardiac function is somewhat more difficult to recognize. Cessation of brain

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function, however, requires the ability to discern subtle distinctions not readily recognized by the general population. Martin Pernick connects the historical fear of being buried alive to the fear that one might have one’s organs removed before one is dead; and he claims that it was this fear that prompted the drive to redefine death. The redefinition of death was an attempt by doctors to reassure a wary public that doctors would never remove organs while a patient was alive. Pernick interprets the movement to redefine death not as primarily driven by the new technologies created to keep people alive, but as a slow progression of changes in the meaning of death that preceded the 1960s, dating back to the mid-1700s.13 As a prelude to the redefinition, Pernick highlights discoveries from the early twentieth century that would lead to abstract philosophical questions, for example, the “successful” experiments in the 1940s and 1950s in which dog and ape heads were transplanted to the bodies of other dogs and apes by both Soviet and American scientists.14 Life, defined as physiological function, could be sustained within both the heads and bodies of decapitated dogs and apes. Pernick also draws attention to the way in which Soviet-Marxist materialism fits nicely with such a materialist definition of life and death.15 So, Pernick argues, scientific discoveries, particularly those in physiology, prepared the ground, first for technological innovation and second for the drive to systematize a physiological definition of death. While at one level Pernick is correct in emphasizing the effects of strictly physiological insights, there can be little doubt that transplantation technology also captured the imagination of Western societies and was proclaimed by those who pushed for a redefinition of death as a great leap forward.16 But what was feared by society, and what the machines made possible, is that certainty about death was not well demarcated. The patient on the machine was neither in a hospital bed, and thus alive, nor in the coffin, and thus dead. The front cover of the report by the presidential commission illustrates Giorgio Agamben’s point about the in-between of life and death that is made possible by technological manipulation of physiology;17 physiology animates and inspires the tools of medicine, which makes possible transplantation by opening a possible source for donors, and at the same time creates a new category of death. The in-between space is the space occupied by those who are alive, yet cut off from the relational

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world and thus dead to that world. They appear to be living because the life blood circulates and the machine sustains them. They appear to be breathing, but there is no possibility that they can relate to the world around them; they have been sealed inside a medical coffin. Are the people in coma dépassé, the space beyond coma, in a hospital bed or in a coffin? They are patient, literally passive, to the technology that sustains circulation and ventilation. The patient in le coma dépassé is a living machine, as she has always been, a machine whose function resists death. She is both a dead machine and a living cadaver. The presidential commission tells us that she is already in the coffin, because she needs the life blood and the machine to make her “alive,” a machine that takes over the functions lost when the whole brain, including the brain stem, has died. She is a living machine, whose parts can be used by those whose organs are dying.

f rom  L i v i n g  c a Dav e r s  to  Dea D Do n o rs

The redefinition of death is a very complicated story. According to Giacomini and Lock, the new definition of death as whole-brain death is a cultural development due substantially to the new possibility of transplantation. I find their thesis compelling. Calixto Machado and others disagree with Giacomini and Lock, claiming that transplantation had little to do with the redefinition of death and that neurological features alone were the driving force behind the articulation of criteria for brain death.18 Machado and his co-authors defend the idea that the redefinition of death was not corrupted by conflicts of interest, namely, that the pressure for transplantation was not an issue or a primary factor. In fact, they attempt to articulate a history of transplantation that is parallel but unrelated to a history of the redefinition of death. They attempt — unconvincingly, in my view — to show that these histories are separable from one another and only inadvertently crossed paths in 1963 and again in 1968. On their account, a transplant surgeon in 1963, Guy Alexandre, adopted “BD (brain death) diagnostic criteria similar to those from the Harvard Committee and applied those criteria in performing the first organ transplant from a brain-dead donor.”19 The kidneys of a donor-

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patient were removed after the patient had sustained severe brain injury; for the first time, organs were removed prior to the cessation of the patient’s heartbeat and thus prior to the patient’s death, for at the time, all definitions of death required cardiorespiratory failure.20 The second unrelated and fortuitous intersection of these independent histories — again according to Machado — took place when the Harvard brain death criteria were publicly articulated. This argument may be superficially defensible, but the in-depth evidence contradicts it. The term “brain death,” in particular, was not used in 1963. Alexandre believed that he was defining death, but he formulated the idea as death itself, not as brain death. Moreover, he articulated several criteria for death, which include non-neurological ones. It should also be noted that although Alexandre described these criteria at a conference in 1966,21 as discussed below, he did not write about these criteria himself or publish his data. Before the presidential commission report in 1968, the term “brain death” was not in use. Other terms, such as “coma dépassé,” “irreversible coma,” and simply “death,” were used, but not “brain death.”22 There can be little doubt that, prior to the mid-1960s, medical practitioners in great numbers began to notice that patients with cardiovascular function but minimal brain function were being sustained by the technologies of the ICU. Moreover, there is little doubt that the physiological understanding of heart failure or kidney failure or liver failure resulted in the idea that heart or kidney or liver function could, in theory, be replaced by artificial organs, as well as by donor organs. Indeed, a technological optimism, pervasive at the time, held that organ transplantation would be a provisional measure until the day when machines would be sufficiently sophisticated to take over vital functions.23 And while kidney dialysis and transplantation had some success, all attempts at mechanical heart replacement had failed in animals and could not be trusted in humans in the early to mid-1960s. The first extensive conversation with respect to a redefinition of death took place in 1966 at a conference of the Ciba Foundation, with the title “Ethics in Medical Progress: With Special Reference to Transplantation.”24 The main topic of discussion was redefining death in order to improve transplantation success. Even here, however, the term “brain death” was never used. The first successful human-to-human

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kidney transplant had taken place in 1954, and the first unrelated donor transplants became possible once immune suppressants were available to prevent organ rejection. As noted, the first “dead” donor transplants were carried out in 1963 by Alexandre, who attended the 1966 conference, although not as an invited presenter. According to the conference proceedings, Alexandre articulated five criteria that he and his colleagues “consider as death when we have a potential donor with severe craniocerebral injuries.”25 He provided neither the theoretical ground on which he and his colleagues arrived at these criteria nor the empirical evidence supporting these criteria. He described nine patients with head injuries, all of whom were supported with a ventilator machine, and whose hearts continued to function. Alexandre states: Five criteria were always met in these nine cases: 1) complete bilateral mydriasis; 2) complete absence of reflexes, both natural and in response to profound pain; 3) complete absence of spontaneous respiration, five minutes after mechanical respiration has been stopped; 4) falling blood pressure, necessitating increasing amounts of vasopressive drugs (either adrenaline or Neo-synephrine [phenylephrine hydrochloride]); 5) a flat EEG. All five conditions must be met before the removal of a kidney can be considered.26 These criteria were not presented as diagnostic criteria for “brain death.” Nor were they established as empirically valid. Rather, they were the criteria that allowed the patient’s kidneys to be removed. In addition, Alexandre noted that these patients had been in the hospital for some time and that they had shown no signs of improvement.27 However, no exact length of time was given. Alexandre’s nine patients may have met criteria for whole-brain death — criteria that would be articulated in 1968 — although wholebrain death was not a diagnostic category either in 1963 or in 1966, when the Ciba Foundation conference was held. Alexandre states, “In our nine cases we switched off the respirator immediately after the kidneys were removed. The heart beats of all the patients ceased within two or three minutes. In my opinion it is irrelevant whether a heartlung preparation goes on for two days or even for weeks: it is still a heart-lung preparation and for us it is still a dead person.”28 Contrary

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to Machado’s interpretation, Alexandre cannot be thinking of his criteria as whole-brain death criteria if he thinks that the patients — here referred to as “heart-lung preparations”— could have lasted for days or weeks after removal of the ventilator. Patients with whole-brain death necessarily die within minutes to hours, not days to weeks, after the ventilator is turned off. Given the context of the discussion and the context in which Alexandre brings up his series of nine patients as “potential cadaver donors,” the only reasonable interpretation is that he designed these criteria solely for the purposes of using the organs of these patients — these “heart-lung preparations.” These cases also highlight the difficulty that Alexandre and others had in talking about their patients. The participants in the Ciba Foundation conference were not quite sure how to refer to patients with beating hearts but with minimal signs of neurological function. They were referred to in traditional terms, such as “patients,” but also as “potential donors.” They were referred to by the quality of their state, for example, as being in an irreversible coma. Some participants referred to them as dead. Alexandre at least attempted a systematic definition so as not to “cheat potential cadaver donors.”29 These “potential cadaver donors” were also referred to as “living cadavers,”30 a designation to which a few participants objected since it makes the donor sound as though she is living, not to mention that cadavera in Latin literally means “corpse” or “dead body.” Adding “living” to cadaver sounds contradictory and hearkens back to notions of vivisection. Yet the oddest of all designations for patients kept alive on machines was “heart-lung preparations.”31 No one would contest that these patients were quite possibly in irreversible states and near to death. The doctors were struggling to find the right language. Yet most of their language seems to minimize the idea that these patients are fully human and therefore deserving of full protection under the law.32 Thus, we see an attempt to medicalize the patients in such states by reference to the laboratory. “Living cadaver” fits with traditional language used for the corpse studied in the anatomy laboratory, where these surgeons and physicians and the vast majority of all doctors learned their anatomy. In addition, by the mid 1960s, all medical students had studied physiology in the dog-lab, where living dogs were prepared for the study of particular systems by

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having their hearts and lungs isolated for systematic investigation or experimentation — a heart-lung preparation.33 Once again, the names and values of the anatomy and physiology laboratory creep into the clinical arena. Hard scientific views and utilitarian pragmatism were not the only driving forces in the move to redefine death. The spirit of technological advancement was also part of the mix. Joseph Murray, a transplant surgeon, who would later sit on the Harvard Ad Hoc Committee, tied transplantation to space exploration. He remarked that space travel to distant planets may necessitate extra organs, to allow people to survive in the harsh conditions of space.34 While he did not explain how he planned to acquire transplantable organs for space travel, during the committee’s discussion it became very clear that cadaveric donors would be the major source. In more realistic moments, Murray optimistically claimed that all technological disciplines, taken together, can better define the biological identity of humanity. The study of transplantation biology collects a diverse tribe, or possibly a galaxy, of scientific disciplines. The pathologist, the microbiologist, biochemist, geneticist, zoologist, internist, physiologist, surgeon, pharmacologist, radiologist, virologist, and veterinarian all have a notable interest in this search for the essentials of one’s own biological identity. Advances in any of these disciplines will influence the entire field, and only the most unimaginative would freeze our thinking within today’s body of knowledge.35 This substantial technological optimism and sense of technological progressivism make clear what death was: it needed to be a precise thing or a precise state of being in order for it to be defined and declared. Death will be recognizable to the discerning physician both through technology and technique. Only the precision of science or the precision of its practitioners can diagnose death. Thus, we see as a natural development the push to use another new technology built around another physiological understanding — the electroencephalogram (EEG), which measures the functional electrical activity of the brain.36 Even Alexandre used EEG criteria as a part of his determination for who

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might qualify as “potential organ donors.”37 The EEG allows the doctor to look more clearly and more deeply into the brain and was thought to be an essential part of the array of diagnostic criteria needed to pronounce a patient dead, thus allowing the removal of organs for transplantation purposes.38 S. D. Rosoff and R. S. Schwab, for instance, presented data that were “designed to protect the physician and electroencephalographer from encountering medico-legal problems.”39 With the aid of neurophysiological technologies, these neurophysiologists thought that they could provide a definitive means of proving death. A certain spirit of progress and advancement was in the air, an optimism regarding the tools of science that sat at the core of redefining death even prior to the first cadaveric heart transplant. Many doctors had the sense that, like the electrocardiogram (ECG), which could diagnose cardiac death, the EEG would diagnose death of the “human heart-lung preparation,”40 not unlike Alexandre’s views. Thus, technology and physiological understandings of life and death generally framed all of the possibilities, from transplantation to brain death. Some doctors at the Ciba Foundation conference, such as Roger Platt and David Daub, wanted to avoid robust medical and legal definitions of death.41 Platt argued that the opinions of the conference participants were ahead of the rest of society at the time of the conference, and that “it may be dangerous to get the legal situation too carefully tied up at this stage. It might be better to go on doing what we are doing according to our own consciences and hope to keep out of the hands of the law for at least another five years.”42 A rigid definition, Daube suggests, might do more harm than good by acknowledging what everyone seems to understand: that human death is not instantaneous.43 In other words, there were those who understood that death is not the absolutely thin and definable line between life and decay that the anatomists had claimed it to be. The proponents of transplantation, however, needed death to be what it had always been since the end of the eighteenth century, a precise moment definable in space. Prudence dictates a robust definition of death so as to be in a better position to ensure transplantation success. If death is thought of as the end of a long process, in which the body gradually disintegrates after neurological injury, the possibility of

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doing transplants is threatened. Organs are more likely to survive after transplantation if they have been perfused up to the last possible moment before their removal from the donor.44 By an appeal to the language of physiology and technology, it becomes easier to find a way to measure features of patients nearing cardiovascular death, so as surgically to remove organs before frank cardiovascular collapse. The scientist must first define and then operationalize what she wants to define in order to know when she comes across an instance of a defined quality. In finding tests for death, which she is trying to define, she further refines the definition. The proponents of transplantation are clearly importing the terms and techniques of the laboratory into the clinical arena, with little interpretive work. As I noted in chapter 3, it is common practice for physiological data from the animal lab to move quickly into clinical practice and medical research. There should be little surprise that the terms “living cadaver” and “heart-lung preparation” are imported directly from the anatomy and physiology laboratory, respectively, into the clinical arena, for the purposes of progress in transplantation. The importation of such language is a real and understandable phenomenon, for, like the space of the ICU, where the person disappears into the objectifying technology, the patient dying from a neurological injury slips beneath the physiological criteria and becomes a new kind of object. These patients are no different from the animals upon which vivisection had been carried out. They become “heart-lung preparations,” “living cadavers.” They are not in a hospital bed but the laboratory; they are not in a hospital bed but a coffin.

co ns t r u c t i n g  D e a D B r a i n s

In her book Twice Dead, a tour de force, Margaret Lock examines in detail the development of the medical idea of brain death as a cultural production. By providing an alternative cultural perspective — namely, that of Japan, where brain death is not a concept in use — Lock highlights the way that science and technology may frame our ethical and legal understandings of brain death, and forces us to question our own understanding of science and technology, as well as our claims to biological truth. How is it, she asks, that a country as technologically ad-

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vanced as Japan can have such a different perspective on brain death, compared to that in the United States and many other countries? Her answer is that understandings of biological death are culturally produced, even if we are all dealing with something very real, the dead body. It is important to note that cadaveric heart transplantation did not begin in earnest in Japan until the 1990s. It seems that in the West, transplant surgeons, above all others, needed death to arrive a little earlier than cardiorespiratory failure. There can be little doubt that transplant surgeons were directly involved in pronouncing potential donors officially dead for the purposes not merely of renal transplantation but also of heart transplantation.45 Despite the fact that renal transplant surgeons had been taking organs from those in le coma dépassé, Christiaan Barnard, the first Western surgeon to succeed in a human heart transplantation in 1967, made sure that the media knew that Denise Ann Darvall’s heart had come to a complete standstill before it was removed from her body and placed in the body of Louis Washkansky.46 Even though Alexandre had been taking organs from “dead” patients for several years and the Ciba Foundation conference was already grappling with what it meant to remove organs from patients in coma dépassé, Barnard was politically astute; he realized that the heart occupied a unique cultural space, requiring special attention to society’s perceptions. Both Lock and Giacomini describe the central role of the media in presenting heart transplantation to the public. Media sources gave conflicting reports about how the decision was made to remove Darvall’s heart and also kidneys for transplantation.47 According to Lock, the media both fueled the fires of technological optimism and, at the same time, threw into relief social concerns about what counts as death and the process by which medicine defines death. As Lock also documents, Barnard conducted, for his own benefit, the media circus that surrounded his first two heart transplant operations. He made himself available for interviews and was the subject of several articles in popular news magazines.48 He postponed the second transplantation operation until after his return to South Africa from New York, where he appeared on the CBS television news program Face the Nation. Before departing for the United States for his CBS interview, Barnard jokingly instructed Philip Blaiberg (the second patient

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to receive a donor heart) not to die while he was away.49 Even Blaiberg himself was part of the media blitz, by participating in a photo shoot showing him “swimming” several months after surgery. Lock documents that the photo shoot was orchestrated; Blaiberg was so debilitated that he could not get himself into or out of the water, let alone “swim.”50 The news media seemed to both support and undermine early heart transplantation, but we can be certain, in agreement with Pernick, that the redefinition of death as whole-brain death in 1968 was a key event in repairing any damage that heart transplantation surgery might have inflicted on the reputation of the medical profession.51 The successful media blitz around the use of organs from the deceased prompted two important and nearly simultaneous events in the history of the braindeath debate: first, Christiaan Barnard’s Cape Town conference in July 1968, and second, the publication in August 1968 of the recommendations of the Ad Hoc Committee of Harvard Medical School. Barnard’s conference was on cardiac transplantation, and a portion of the proceedings was devoted to the topic “Selection and Preparation of the Donor.”52 The Harvard committee was a result of Henry K. Beecher’s petition to the dean of Harvard Medical School, within one month of the first heart transplant surgery, to create a committee to consider the use of patients in irreversible coma as potential donors. The section devoted to “Selection and Preparation of the Donor” took up about a quarter of the time of Barnard’s conference, which was dominated by cardiac surgeons. Renal transplant surgeons were also present, as were a few neurologists and neurosurgeons. No neurologists were listed as major participants, although one, Dr. de Villiers, presented a few thoughts. It is interesting that the neurologists or neurosurgeons53 did not attempt to enumerate neurological criteria as a means of determining when organs could be removed, even though cardiac transplant surgeons were seeking these criteria. One transplant surgeon, C.W. Lillehei, referenced a presentation at the American Neurological Association that was an autopsy study of patients who had suffered cerebral injury.54 However, the results, as presented by Lillehei, were not engaged with scientifically or critically. Another transplant surgeon, Dr. Zerbini, enumerated the following criteria that would allow a patient to become a donor: (1) total absence of reflexes;55 (2) bilateral paralytic

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mydriasis; (3) absence of spontaneous respiration; and (4) isoelectric encephalographic tracings in every lead, not changed by sensitive, sensorial and chemical stimulation.56 Whereas some of Alexandre’s criteria were not neurological, all of Zerbini’s were. Denton Cooley, a transplant surgeon from the United States, apparently resisted rigid criteria. Barnard, with some frustration, stated to Cooley, “But Denton, we can’t get away from the fact that we have to decide when we are going to stop treating a donor.”57 Note that the patient is already presumed to be a donor in this statement, even though the question is whether or how to define criteria that would allow the patient to become a donor. Cooley, on the other hand, did not even want to use the words “dead” or “alive”: “I think we should avoid the words ‘alive’ and ‘dead’ as synonymous with brain function or cardiac function. ‘Alive’ and ‘dead’ are such nebulous and vague terms, so illdefined that they will never be defined, since no one understands either the meaning of ‘life’ or ‘death.’ ”58 Furthermore, Cooley stated, “In my opinion the clinician can become too pre-occupied with the rights of the dead, namely the donor, at the expense of the recipient. We should not jeopardize the possible survival of the recipient while we are waiting around to make a decision whether the cadaver, as you call it, is dead or not.”59 Once again, the status of donor and recipient seems confused. As a result, the surgeons fall back on the language of the laboratory. Oddly, they often referred to a living patient as a “cadaver.” Patients who were thought to be potential donors were referred to as donors, even if they ultimately were not used as donors, and recipients were referred to as recipients, even if they died before ever getting the heart transplant.60 Barnard asked his neurosurgeon, Dr. A. P. Rose-Innes, when a person might be considered a donor. Rose-Innes replied, “I do not believe we can share this responsibility [of defining death] even with relatives. We may not ask consent of the relatives; it is entirely a technical medical decision, nor should we be circumscribed in this decision by legal authority.”61 Clearly, several transplant surgeons did not want the power of diagnosing life and death to be taken away from them, including such major figures in the history of cardiac transplantation as Adrian Kantrowitz, Barnard, Cooley, and Lillelei.62 Their argument was that it

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has always been the purview of all physicians, by virtue of their expertise, to know when the moment of death has arrived. It is a matter of “trust and honesty”63 that transplant surgeons should be allowed to decide about potential donors. Only a few surgeons and the neurologistparticipants recognized a need to separate the decision about the neurologically injured patient (the “potential donor”) from the purview of the transplant surgeons. The same would be true for the Harvard Ad Hoc Committee. Harvard’s Ad Hoc Committee had finished its work by the time of Barnard’s conference, and its findings were published a month later. Giacomini has shown, through extensive archival research on the unpublished papers of Henry K. Beecher, the committee chair, that transplantation played an important role in motivating the committee’s redefinition of death. The public, as Giacomini notes, had little interest in comatose or neurologically injured patients prior to the drive to redefine death. It is important to remember that the distinctions made today between a coma, a persistent vegetative state, and brain death are not distinctions that existed in the 1960s. These distinctions emerged over the ensuing years. In a survey of newspaper publications between the 1930s and the mid-1960s, Giacomini observes that patients in coma were not represented as ethical dilemmas.64 Instead, “the comatose were imbued with a fictional liveliness in these accounts, which focused more upon the patients’ progress, health, and growth than upon disability or dismal prognosis. . . . Patients were never portrayed as virtually “dead,” or even questionably alive.”65 Thus, Giacomini suggests, patients in deep coma were never portrayed in these articles as costly, time-consuming burdens. Caring for these unfortunate people in coma dépassé was part of routine care, even if there was a strong impetus from the medical community (transplant surgeons) to redefine death in order to avoid the emotional or financial stress on the patients’ families. I do not deny that these patients caused family stress and financial strain — no doubt they did, and they still do. The point is that these stresses and strains did not become important enough to enter medical literature or news items until transplantation of organs became possible. Familial and financial strain then became one more consideration that added weight to the idea of changing the definition of death, even though this did not appear to be a major public concern.

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The letter of invitation sent by the dean of Harvard Medical School to the various committee members spelled out their task as follows: “Dr Beecher’s presentation [on the ethical problems created by the hopelessly unconscious patient] re-emphasized to me the necessity of giving further consideration to the problem of brain death. With its pioneering interest in organ transplantation, I believe the faculty of Harvard Medical School is better equipped to elucidate this area than any other single group.”66 If organ transplantation was to succeed, death would have to be located in time as a specific moment instead of as a process, and in a particular place, which in this case was the space of the brain. The published report begins with this paragraph: Our primary purpose is to define irreversible coma as a new criterion for death. There are two reasons why there is a need for a definition: (1) Improvements in resuscitative and supportive measures have led to increased efforts to save those who are desperately injured. Sometimes these efforts have only partial success so that the result is an individual whose heart continues to beat but whose brain is irreversibly damaged. The burden is great on patients who suffer permanent loss of intellect, on their families, on the hospitals, and on those in need of hospital beds already occupied by these comatose patients. (2) Obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation.67 First, note that the committee members couched their work in terms of the desperate situation of those who are irreversibly comatose: the economic costs, the burden on families and loved ones, and the burden on available hospital beds. Yet they do not appeal to public concern about these problems, which seems to have been low, based on Giacomini’s study. Second, they imply that it is the obsolete definition of death that has led to controversy, and not overzealous technological aspiration concomitant with attempts to gain organs for transplantation. Giacomini argues that the committee was primarily guided by certain answers, not by the questions. An early draft of a report, circulated among the committee members, is indicative of the questions and answers that drove their work.

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1.

Under what circumstances, if ever, shall extraordinary means of support be terminated, with death to follow? (Answer: When the criteria of irreversible coma described above have been fulfilled.) 2. From the earliest times the moment of death has been recognized as the time the heart beat ceased. Is there adequate evidence now that the “moment of death” should be advanced to coincide with irreversible coma while the heart continues to beat? (Answer: Yes.) 3. When, if ever, and under what circumstances is it right to use for transplantation the tissues and organs of a hopelessly unconscious patient? (Answer: When the criteria of irreversible coma described above have been fulfilled.) 4. Can society afford to discard the tissues and organs of the hopelessly unconscious patient when they could be used to restore the otherwise hopelessly ill but still salvageable individual? (Answer: No.)68

These questions and their answers are designed to build an airtight case for a definition of death that promotes organ donation and transplantation. This is clear, as Giacomini admirably describes, from the internal correspondence between the members of the committee and from the way that language and even the title of the committee’s paper were negotiated both to capture the irreversibility of coma and to frame that irreversibility as death itself, coining for the first time the term “brain death.” Arguments among the committee members are also revealing. The same draft required two tests for apnea, separated by three days, prompting one transplant surgeon to respond, “Does this mean we must wait 72 hours” in order to pronounce the death of the potential donor?69 The committee settled on 24 hours as sufficient, but it offered no scientific data to support a 24-hour waiting period as equivalent to a 72-hour period. The committee was aware that its report had to be palatable to the public. In a letter to Beecher, the dean of the Harvard Medical School commented on the phrasing of a statement in the penultimate draft of the report as follows: “The connotation of this statement is unfortunate, for it suggests that you wish to redefine death in order to make organs more readily available to persons requiring transplants. Immediately the reader thinks how this principle might be abused. . . .

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Would it not be better to state the problem, and indicate that obsolete criteria for definition of death can lead to controversy in obtaining organs for transplantation?”70 The final document would need to be refined and unassailable if they were to achieve their goals. The following statement from an early draft of the report would never do for the final version: “The question before this committee cannot be simply to define brain death. This would not advance the cause of organ transplantation.”71 Giacomini draws attention to another important difference between the early drafts and the final report published in the Journal of the American Medical Association. The committee had worked in relative isolation. Their report cited only one source reference, and that was Pius XII’s statement from 1957 that the Catholic Church was not in the business of defining death.72 They drew on no other literature for support, empirical or theoretical. Joseph Murray, who was on the Ad Hoc Committee, was also a key participant in the CIBA Foundation conference in 1966, but there was no appeal to its proceedings. Giacomini concludes that the work of this committee was done in haste. On her account, the reason for the rush to publish a report was to support those at Harvard (including Joseph Murray) who were transplant surgeons; or, if we believe Martin Pernick, the rush to publish was to nip in the bud public concerns that anyone might have his or her organs harvested — or be buried — while still alive. Thus, brain death was defined by fiat, and death was redefined for the purpose of either placating a public increasingly fearful of transplantation of organs from those who might have lived (Pernick) or of gaining more potential donors (Giacomini). Either way, we see a very robust relationship between technology and society. Brain death is as much a social construction as a biological reality. At one level, Pernick is correct: the powerful institution of medicine was concerned about public reaction. This point was made abundantly clear at Barnard’s conference by a certain Dr. Grondin, who stated that a decision had to be made if transplantation was to proceed: “The public is worried about one thing and that is that we are going to use donors who could be restored. This is the main preoccupation of the public, of the lawyers, and of the theologians. We have to find a definition, we

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have to establish some boundaries, otherwise the public will always be very critical about human heart transplants.”73 It appears that transplant surgery, and indeed those in power in that medical establishment that is the Harvard Medical School, perceived the need to restore public confidence in the institution of medicine as stewards of technological progress. Yet it is also clear that everyone, from the Ad Hoc Committee to Barnard himself, was eager either to hold on to the power of defining life and death or to shape the way the law would define death. The problem existed primarily in the ambiguity and confusion about who was alive and therefore deserving of the normal protections afforded to the living under the law, and who, by virtue of neurological deficit or injury, counted as being in an irreversible state of death and no longer deserved protection under the law. One could no longer depend upon one’s senses to distinguish between life and death; instead, one needed the technical expertise and social status of the physician, as well as the tools of technology that would allow one to peer deeply into the body — particularly the brain — and to recognize death, once and for all. This task of identifying death in the brain would require the backing of the law.

of  D e a D B r a i n s a n D  a r c a n e p hi Lo s o p hy

After the Barnard conference and the Harvard committee report in 1968, it would take another thirteen years before brain death was defined robustly and finally ensconced within the law, through the work of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research and the publication of its 1981 report, Defining Death. By the time the President’s Commission began to meet, transplantation had slipped into the background as the prime motivator for a redefinition of death, though it remained implicit in the deliberations. This time there were no transplant surgeons participating in the work. The words “transplant,” “transplantation,” and “transplanting” appear twenty-five times in the eighty-four-page body of the commission’s 1981 report, but they do not explicitly motivate the conversation. Instead of transplantation, the commission focused primarily on the vagueness of the in-between state of le coma dépassé and

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the need for trust in the health care system; they sought clarity in order to ensconce a uniform definition of death in the law. A legal definition, the commission stated, had become necessary: Traditionally, great deference has been paid to medical expertise in the making of diagnoses of death. As long as the standards employed by the profession were stable and basically congruent with opinion in the community at large, there was little reason for public scrutiny. The law simply reflected the common opinion about death and largely let the physicians — once their techniques and skills had risen to the necessary level of reliability — formulate and apply the tests to measure vital human functions. Yet the movement toward ever more sophisticated medical science, which produced treatments that interfered with the efficacy of the accepted tests, led medicine to new tests that were less comprehensible to the public. This made clear that a choice about the “definition” of death was at issue, a choice that ought to involve people beyond the biomedical community.74 The commission also stated that “if death were entirely a medical matter, the process of ‘redefinition’ might have been left in the hands of the health professions.”75 Thus, by not leaving the matter in the hands of the physicians and surgeons, the commission suggested that somehow, through its deliberations, it had established a widely acceptable and less medically driven motivation to redefine death. The transplant surgeons Cooley, Barnard, Lillehei, and Kantrowitz, as discussed above, wanted to leave the definition and diagnosis of death in the hands of any doctor, and Platt and Daube wanted to leave it in medical hands for as long as possible. Indeed, it is odd even to think that an alternative institution in society might have the power vested in it to define death, especially given the power of medicine in Western society today; the power of defining life and death since the rise of modern medicine has been the purview of the medical profession. So, the task of the commission was to give voice to people “beyond the biomedical community”76 and to bring society into greater participation in the redefinition of death. The task of defining death was given to the commission as a democratic and bureaucratic exercise.

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The commission understood its role in very narrow terms. In its report, it quoted extensively from a 1972 essay by Alexander Capron and Leon Kass on the topic of what a statute that determines death should do.77 Capron and Kass argued that any such statute could approach the question of definition on several different levels: defining (1) the basic concept or idea of death; (2) the general physiological standards for death; (3) operational criteria for death; or (4) specific tests or procedures for determining death.78 Like Capron and Kass, the commission stated that it chose neither to define the concept of death (level 1), because that would “lead down arcane philosophical paths,”79 nor to develop the operational criteria or the specific tests for defining death (levels 3 and 4), because medical bodies are best left to define operational criteria and because specific tests will evolve over time.80 The commission’s conclusion was that its role was primarily to define the general physiological standards for death. Two rather odd points emerge from the way the commission understood its primary role. First, general physiological principles of death are matters of general physiology, which makes them a medical matter (not a task for those “beyond the biomedical community”).81 Yet the committee, at the same time, claimed that redefining death was not “entirely a medical matter.”82 Thus, the commission’s role seemed to be one of intermediary between the medical/physiological community and a suspicious society. In fact, the commission admitted that its role was, at least in part, an attempt to shape culture by redefining death: Present attention to the “definition” of death is part of a process of development in social attitudes and legal rules stimulated by the unfolding of biomedical knowledge. In the nineteenth century increasing knowledge and practical skill made the public confident that death could be diagnosed reliably using cardiopulmonary criteria. The question now is whether, when medical intervention may be responsible for a patient’s respiration and circulation, there are other equally reliable ways to diagnose death.83 In this statement, the commission reassured citizens that medicine, with the backing of the law, had always been a driving force in societal understandings of life and death by virtue of its expertise in such mat-

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ters. As noted above, Platt and Daube wanted definitions of death and practices connected with taking organs to stay out of the hands of the law and to remain within the hands of practitioners; now, practitioners needed the law to more fully bolster the claims of medicine. The commission’s report implies that medicine’s knowledge and practitioners’ skills are always advancing and that medicine’s mode of operation is self-correcting, thus affirming that medicine is capable of monitoring itself and its own progress in defining death. The second odd feature of the commission’s self-understanding is that a nonmedical body, by definition, is better suited to defining death at its basic social and philosophical level (level 1) than to defining general physiological principles of death (level 2), operational criteria for death (level 3), or which specific tests ought to be employed (level 4). The commission is prima facie better suited to dealing with social and philosophical questions than a group of physicians. Yet the commission members worked very hard at avoiding philosophical questions, which would require discussion of deeply held commitments. The commission, in addressing social aspects of medical questions, did so in the typical mode of medical ethics, by deploying midlevel principles. For some ethicists, this is a good way to discern and deal with issues of morality;84 for others, these midlevel principles already deploy too much, and an even more minimal ethic is required in a secular society, especially in the absence of a rich shared ethics.85 As with much of medical ethics, conversations requiring deep philosophical discussion rarely take place, precisely because they depend on speculative metaphysical insights and beliefs, including religious metaphysical insights and beliefs.86 As a result, the dominant, public discourses on medical ethics settle for midlevel discussion. The commission chose whole-brain death as the definition of death because it was one adopted by medical experts, who can assess general physiological function. The brain has a dual role in defining humanness. First, it is the seat of personhood. Second, it is the seat of physiological control in that the brain stem is necessary to physiological functioning. The higher brain makes possible “the psychological functions which make consciousness, thought, and feeling possible. These latter functions are located primarily but not exclusively in the cerebrum, especially the neocortex.”87 The commission considered but rejected other

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options, including higher brain death and loss of personhood or personal identity. Thus, they chose whole-brain death because both physiological and psychological brain functions are captured under this definition. Moreover, general physiological definitions helped them avoid philosophical ones. The odd thing is that higher brain death — cerebral death — is also potentially easily described by a physiological definition, as opposed to loss of personhood, which involves philosophical definition.88 The two are very close together, however; thus, defining death as higher cerebral death would tie the commission to metaphysical speculation about the nature of personhood, something the members wanted to avoid. The other function of the brain, this time at the level of the brain stem, is that of physiological integration. Life is an automatic function of the “animal machine,” as Claude Bernard and Arthur Guyton might have stated.89 The commission noted: One characteristic of living things which is absent in the dead is the body’s capacity to organize and regulate itself. In animals, the neural apparatus is the dominant locus of these functions. In higher animals and man, regulation of both maintenance of the internal environment (homeostasis) and interaction with the external environment occurs primarily within the cranium.90 By focusing on the integrating activity of the brain stem, the commission seemed to be arguing for a kind of holism as the central feature of organic animal life of the human. This holism, however, takes on a physiological rather than a philosophical character; the commission focused on the whole brain because it is “neither revivable, nor replaceable.”91 The position of the commission is thus a dualism, where higher cortical function is the “location” of the person and the brain stem is the location of a physiological holism, or vitalism, as H. Tristram Engelhardt has called it.92 The whole brain then becomes the physiological location of the more philosophical and ethereal mysteries of the human being — personhood and an integrating holism. At best, then, the personhood/holistic philosophy of the commission was an emergent feature of physiological materialism; at worst, it was a kind of physiological reductionism. The main point, however, is that the physiological

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definition of whole-brain death cannot help but deploy a philosophical framework of human being, and it seems clear that the commission embraced the whole-brain definition to avoid committing themselves to one “arcane philosophical” definition over another. With the wholebrain definition of death, the commission embraced both systemic physiological function and psychological function, avoiding philosophical commitment, in the members’ own estimation. The commission briefly entertained other notions of death. It explored several formulations that did not rely wholly or at all on brain criteria, “such as those which hold death to occur when the soul leaves the body or which equate life with the flow of air and blood through the body.”93 The former is a philosophical/religious definition, the latter a physiological one. “Nevertheless, without resolving all the conceptual issues it raised, the commission determined that all the formulations, except perhaps the last, were consistent with the public policy recommendations of its final report,”94 namely, that whole-brain death amounts to death. In other words, the commission seemed to claim that formulations of death that did not explicitly refer to the brain actually do so without realizing it, for life all along is and has been the automatic functioning of the machine; and the brain stem is integral to this functioning. Thus, the commission seemed to think that by embracing the brain stem, it avoided metaphysics by avoiding the personhood question. Nevertheless, its members deployed a metaphysics of holism, as I have called it, or of vitalism, as Engelhardt has called it. It should also be noted that the cessation of flow of blood and of the movement of air were entertained as criteria for a diagnosis of death, and that up until the mid-1960s these criteria were the “traditional”95 criteria for death. But oddly enough, the cessation of blood flow and airflow is listed in the report among the more ethereal definitions of death, along with the philosophical/religious definition, “when the soul leaves the body.”96 Despite placing breathing and blood flow in the same category as notions of souls, the commission in a sense preserved the traditional definition of death — the cessation of the flow of blood and the movement of air. After all, when breathing and blood flow fail, death of the whole brain is the result. In other words, death itself is in the brain. “But breathing and heartbeat are not life itself. They are simply used as signs — as one window for viewing a deeper and more complex reality:

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a triangle of interrelated systems with the brain at its apex.”97 Thus, there are three ways of defining death at the level of general physiological principles, that is to say, at level 2: irreversible cessation of breathing; irreversible cessation of circulation; and whole-brain death. All three are physiological principles that must be intact for there to be life. Yet since “breathing and heartbeat are not life itself,”98 it stands to reason that the commission considered the apex of the physiological triangle — namely, the brain — to be the space where life and, in its absence, death reside. The exercise of the President’s Commission was to bolster public support for medical definitions of death and to put the force of law behind those definitions. Since medicine knows life — a series of physiological functions that resist death — its practitioners should be the ones who are vested with the power of defining death. The commission attempted to reassure the public that doctors are able to diagnose death reliably and that a philosophical/religious definition is not being forced upon them; instead, a merely physiological definition is being articulated. In other words, the commission claimed to merely “define” death at level 2 — the general physiological level — and in fact rejected other nonphysiological definitions. Yet it surreptitiously embraced another conceptual definition (level 1 definition), namely, the “permanent cessation of the integrated functioning of the organism as a whole.”99 In other words, the commission claimed that it was not engaged in philosophy when it chose the physiological definition (whole-brain death), yet thereby subtly ushered in a philosophical definition. For, as Guyton and Hall’s textbook of physiology states, “the human being is actually an automaton, and the fact that we are sensing, feeling, and knowledgeable beings is part of this automatic sequence of life.”100 The regulatory function of the whole brain is life. By the time the commission recommended redefining death as whole-brain death, “life” had long been associated with the physiological definition of all functions that resist death. Yet, as I have argued, that physiological definition has philosophical and metaphysical import. Life itself has come to mean the efficient and mechanical control of matter at very complex levels. The fact that vitalism is no longer a viable philosophical definition of life is irrelevant; nor does it matter that the concept of a soul is no longer possible for a secular medicine.

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In crowding out any metaphysics of final and formal causation, the commission believed that medicine no longer participates in a metaphysics. I have argued, in contrast, that a metaphysics of efficient causation has taken its place. The brain stem regulates efficiently the machine of lung and heart and all the other subservient systems. All lower systems serve the cause of life, the brain. This metaphysics allows for easy incorporation into the law. In conjunction with the National Conference of Commissioners on Uniform State Laws, the President’s Commission was able to promote the Uniform Determination of Death Act, in which death is defined as either the irreversible cessation of cardiac and respiratory functions — which subsequently results in death of the entire brain — or the death of the entire brain, the apex of the physiological triangle, which is real death. Following Agamben, then, we can say that life and law have become indistinguishable: the laws of physiological function are wedded to the law of the state.101 But it is not merely the law but also the social apparatus of contemporary biomedicine that animates and sustains the forms of life that we value. The President’s Commission may have merely portrayed itself as making value-neutral claims about life and death, but it was also a public spectacle intended to reestablish public confidence in the institution of medicine.

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Chapter

6

The Exact Location of Death From Brain to Sovereign

The 1981 President’s Commission settled on two ways of diagnosing death: irreversible cessation of function of heart and lungs, or irreversible cessation of whole-brain function.1 The term “irreversible” is central to both, a point that I shall discuss later. With the support of a consensus-driven process, it is not surprising that every state in the United States adopted some version of these definitions. The Uniform Determination of Death Act (UDDA) is thus the law of the land, and the idea of death as whole-brain death seems more definitive than ever.2 Yet it has been vigorously questioned almost from the moment that it was articulated in 1968,3 and in recent years has come under radical attack.4 In December 2008 the President’s Council on Bioethics, acting in a role similar to that of the 1981 President’s Commission, published another statement on the question of brain death.5 The cover letter written by the chair of the committee, Edmund Pellegrino, to President George W. Bush stated that the report is an “inquiry that was occasioned by another forthcoming Council report on ethical questions in organ transplantation. The two reports are linked ethically.”6 The council clearly agreed that brain death and transplantation were linked in a 168 •

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problematic way, and it worked to untangle them. It seemed to echo a point made by D. Alan Shewmon: “ ‘Brain death as death’ began as a utilitarian legislative decree and has remained a conclusion in search of a justification ever since.”7 Or, as I have claimed, brain death is a means to efficiently promote transplantation and is part of the larger social apparatus of medicine. The President’s Council produced a much more philosophically sophisticated treatment of the question of whole-brain death — or total brain failure, as the council’s statement calls it — than that of the 1981 commission. Whereas the commission failed to engage in philosophical questions, allowing its philosophical assumptions to lie hidden between the lines of its statements, the council in great humility acknowledged the enormous difficulty of defining, operationalizing, and diagnosing death, and held that some philosophical work is necessary before attempting these tasks. An important change is that the council dispenses with the language of brain death or whole-brain death because, as it maintained, these terms have led to confusion, especially now that they have moved into the vernacular. For instance, consider the following from a 2005 New York Times article: “Late last month, New York’s major newspapers reported that a 13-year-old boy had ‘died’ after he was taken off ‘life support.’ That assertion reflected a fundamental misunderstanding of death as defined by the laws of all 50 states. In fact, the boy had died more than a week earlier — from a severe brain infection.”8 What was the boy’s status before being removed from the machines and after he had been declared “dead,” while his heart was still beating? Was he dead when his brain was dead, or was he alive while in the ICU? Or take a quote from political opinion editorialist Marc Cooper in the Los Angeles Times. Oddly enough, the article is on the Taxpayer Tea Parties: “And then, a few years back, there was that chilling, televised midnight seance from the floor of the U.S. Congress aimed at reviving the longbrain-dead Terri Schiavo.”9 Cooper’s statement demonstrates not only how deeply political the question of life and death is — a point to which I shall return in chapter 7— but how deeply confusing brain death, as a concept, can be. Terri Schiavo was by no means brain dead under any legal definition. The council, in order to avoid confusion, chose a more physiologically descriptive term, that of “total brain failure.”10

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The council also sought to separate questions of transplantation from the definition of death as “total brain failure,” even though the relationship between the two animated the work of the council. Despite the fact that there are a myriad of other reasons for defining death as brain death,11 I have argued that the principal motivation in a society that accepts a metaphysics of efficient causation has been to secure organs for transplantation. In fact, part of the reason that the council addressed the question of brain death again was that there are those who would redefine death again, primarily to increase the number of available organs. These drives to change definitions of death to something other than whole-brain death take two forms: “(1) loosening the standard for determining death, or (2) abandoning what is known as the ‘dead donor rule’— the requirement that an individual be ‘really dead’ in order to be a heart-beating donor of vital organs.”12 The council made it clear that the definition of death must be kept separate from the drive to increase the number of organs for transplantation. On this reading, death is only partly socially constructed, but is founded in a biological reality; death is “a real phenomenon.”13 The diagnosis of death must be made before transplantation can be considered, or for patients to be buried, cremated, and so on. The council’s point was directed at those who would abandon the dead donor rule, such as Franklin Miller, Robert Truog, and Dan Brock.14 More is at stake here, however, than finding better definitions of what we mean by human death. Before considering the philosophical aspects of the latest drives to redefine death, I shall explore a few of the practices surrounding the care of those who are dying, those who might qualify as donors. The transplantation movement, in order to replace dead organs, turns to the dead as a source of life. Thus, death itself is central to the transplantation enterprise. The “gift of life”— the rallying cry of the transplantation community — depends on death in order for this gift to be given. Medicine needs death. The rhetoric of life conceals what is at the root of transplantation, namely, death. Life is given, not in the sense of the Greek term phusis (nature), but in the sense of mechanical physics, of physiology. Death is equally the gift of life. That which transplantation medicine needs results in a contradiction or, at best, a paradox: a dead donor, whose body is living.15

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What we see in the practices of transplantation is a return of the repressed, as is evident in the absurdities, incompatibilities, and aporias that emerge in declaring brain death. These absurdities are the direct result of the drive to master death by deploying efficient mechanisms to maximize the necessary resources: body parts suitable for transplantation. Subtle violences emerge from these practices, but the violences are hidden because they are couched in the language of the greater good. Even the dead donor rule never gets past the task of locating death somewhere in the body, once again precluding the possibility of robustly engaging the significance of death for living and for dying. The claim that death can be found within the body, within the brain, leads directly to the aporias and paradoxes involved in organ procurement practices, prompting some thinkers to call for the abandonment of the dead donor rule and creating the possibility of a living donor, who dies in donating.

s T r u c T u r i n g  E f f i c i E nT  a n D Eff EcTivE Do naTi o n

I shall briefly describe the structural relationship between the hospital and the Organ Procurement Organization (OPO), for it is this relationship that results in many of the practices at the end of the life of a patient who is to become a donor. Each hospital contracts with an OPO. As of January 2011, there were 101 accredited OPOs across the United States,16 which are mostly geographically defined entities, but are increasingly becoming structured by contractual agreement rather than geographical location.17 The relationship between the OPO and the hospital is governed by a business agreement. The OPO and the hospital also negotiate how best to follow the guidelines set up by the Centers for Medicare and Medicaid Services (CMS) and the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO).18 The hospitalOPO agreement contains policies and procedures that allow for determination of death and procedures that govern how, when, and who should approach the family to request organ donation. Procedures and policies are articulated so that the OPO is contacted when a potentially braindead patient is admitted to the hospital.

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For instance, when should a hospital contact the OPO? The U.S. Department of Health and Human Services Advisory Committee on Organ Transplantation recommends that the hospital contact the OPO early for any acutely brain-injured patient, well before the patient is pronounced dead. The OPO should be contacted if any patient with brain injury meets any one of the following five criteria: (1) if the patient also requires mechanical ventilation, (2) if the patient also is in an ICU or Emergency Department, (3) if the patient has a Glasgow Comas Score of 5 or less, (4) if the physicians are considering a diagnosis of brain death, or (5) if the physician has ordered that life-sustaining therapies be withdrawn, pursuant to the family’s wishes.19 Moreover, many hospitalOPO agreements also require that these patients be kept alive if any of these requirements are met. What is most remarkable about these criteria is that the patient is still alive when the OPO is called. But the patient must be dead before donation can occur. If the patient is nearing death by whole-brain death criteria, the patient cannot be allowed to die, even if the family insists that the patient would not want to be kept alive on machines, and even if the patient turns out to be dead under the UDDA. In other words, even if the patient is dead under the law, she must be kept alive so that the OPO can make a determination about the patient’s potential as a quality donor and approach the family about donation. The hospital-OPO agreement precludes the possibility of removing the ventilator machine at the request of the family until the OPO has decided whether the patient would be a good candidate as a donor. In other words, a good donor is one whose organs can sustain life, now understood physiologically, but not life under the UDDA. Other policies preclude the patient’s doctor from telling the patient’s family that the patient is nearing death; she is also not allowed to mention to the family that she intends to do tests for brain death until after the OPO has made an assessment about the suitability of the patient as a donor. Only after the patient is deemed to be a donor candidate are the patient’s doctors allowed to tell the family they are going to do a brain-death test.20 After brain death is declared, the patient’s doctor and an OPO representative approach the patient’s surrogate about donating the patient’s organs. The decision to declare brain death remains, on paper, separate from and not motivated by the desire to procure the patient’s organs. Nevertheless, if the structure of the proce-

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dures and policies is such that the OPO must be called prior to defining death, then clearly there is a disruption in the procedural separation between diagnosing/declaring death and deciding about organ donation: the decision about whether the patient is a good donor occurs before the patient is even diagnosed or declared dead. Moreover, the agreements created between the hospital and the OPO are governed by CMS and JCAHO, and these entities require the hospital and OPO to create a quality-control procedure, which on paper keeps the OPO and hospital from violating dead-donor rules, but which is also instituted to maximize the number of organ donors and organs donated.21 An incentive structure is put in place with a series of rewards and penalties. If hospitals receive too many “red marks,” they could lose their accreditation not only for transplantation but for all services. Hospitals can be penalized with a “red mark” in the grading system if the “wrong” person, such as the patient’s doctor or nurse, mentions the possibility of donation without the OPO representative being present. This system of rewards and penalties is meant to promote more successful requests for donation and to curb “ineffective requests.” The doctor or nurse employed by the hospital is not an “effective requestor”; in other words, the doctor or nurse has not undergone training in effective requesting in the way that the OPO representative has.22 In addition, doctors, in consultation with OPO representatives, often make decisions about procedures such as arterial lines and central venous catheterization and pulmonary arterial pressure monitoring, as well as decisions about medications, such as pressors. These procedures are done not to benefit the patient but to facilitate the determination of the quality of the organs and to ensure that the organs are adequately perfused. For instance, pressors are medications that drive up blood pressure. These are administered to keep the patient’s, that is, the potential donor’s, blood pressure above 90. One colleague recounted to me that an OPO representative dictated to him that he must place a central venous catheter in a patient who was not yet declared dead under the UDDA, and that he must begin prescribing pressors for this patient. The patient’s systolic blood pressure was between 87 and 89. The patient was completely stable, producing urine — a sign of adequate blood pressure — and showed no physiological detriment at these blood pressures. Yet because the patient’s pressure

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was below 90 and because the patient might be declared brain dead, the doctor was ordered by the OPO representative to do the procedures and to begin the medication. In fact, if the patient were not a candidate for a diagnosis of brain death, this patient would not have received the medication or the central venous catheter. Although it is likely that the catheterization and the medication resulted in no harm to the patient and did not contribute to the subsequent diagnosis of brain death, the procedures and policies of the hospital-OPO agreement, under the governance of CMS/JCAHO, required that the patient be treated as a donor. The procedure was done, and the medication started for the sake of the patient’s organs and not for the sake of the patient himself. As other examples would show, the bodies of patients are often manipulated to improve success in transplant rather than to benefit the patient, who has not yet been declared brain dead. Indeed, it appears that the law itself — especially with the Uniform Anatomical Gift Act (UAGA) of 2006 — occasionally leans away from the care of the dying and toward the preservation of the organs of the patient-soon-to-bedonor.23 Apologists for OPOs will no doubt claim that my anecdotal description is not part of their routine, and that if such an incident did occur, they would not sanction it. However, the structure of the agreement between hospitals and OPOs, with the sanction of CMS/JCAHO, makes these situations not only possible but indeed probable. The drive for efficiency and effectiveness in preserving organs received further backing in 2003. At that time, the Division of Transplantation of the Healthcare Systems Bureau, which is an agency of the U.S. Department of Health and Human Services, Health Resources and Services Administration, began working in partnership with the Institute for Healthcare Improvement, an independent private organization, with Quality Reality Checks, Inc., and with teams of OPOs and their hospital and transplant-center partners from across the country to increase the number of donors and number of donor organs transplanted per donor. The initiative was called the Organ Donation Breakthrough Collaboratives, and it produced a series of collaborative efforts called the Transplant Growth and Management Collaborative (TGMC), which implemented management-style changes in order to increase both the number of donors and the number of organs procured and used from a single donor.24 The initiative strove to implement a program whereby

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the OPO received “notification of every in-hospital death,” “assessment of each death for donation eligibility” by an OPO representative, and “consultation with families of eligible donors by trained professionals.”25 The TGMC also states, as part of its goals, that any failure to bring to the patient’s or the surrogate’s attention the possibility of organ donation denies dying patients and grieving families the “opportunity to give the gift of life” and results in the “potential death of patients on the waiting list.”26 CMS/JCAHO, which accredits all hospitals in the United States, recently implemented a directive to hospitals requiring that they contact their OPO for every death, so that all deaths might result at least in tissue donation, such as skin or corneas.27 Most important among the management changes, OPOs were especially encouraged to increase Donation after Cardiac Death (DCD), sometimes referred to as Non-Heart-Beating Donation. CMS/JCAHO also requires all hospitals to establish criteria for DCD procedures. Patients and families in the ICU who have decided to begin withdrawing treatment that is deemed too burdensome to the patient are contacted by OPO effective requestors, who are specially trained in securing organ donation from families in such situations. The Collaborative Change Packages produced by the TGMC seek to ensure “unrelenting focus on change, improvement, and results,” “rapid, early referral and linkage” to the recipient pool, and “aggressive pursuit of every donation opportunity.”28 The TGMC set out to create “a culture of accountability for high yield (eight organs every time),” “effective relationships and rapid response network responsibility for donor management, organ recovery, and placement,” and “accountability for aggressive clinical care of the potential donor, the donor, and all organs.”29 The change package also lists strategies to “leverage” changes, including “advocating organ donation,” “involving senior leadership to get results,” creating programs to help staff to “master effective requesting,” “efficiently plan[ning] and manag[ing] the donor case process,” and reflecting “current practices of our high performing teams.”30 Once permission for donation is obtained, the patient receives treatment, possibly for his or her own benefit, but primarily for the benefit of maintaining transplantability of his or her organs. Organs are treated, not necessarily patients. We see, then, an increase in relationships between government agencies (the U.S. Department of Health and Human Services and CMS),

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the hospital-accrediting body (JCAHO), business organizations (OPOs), and hospitals, which are themselves business organizations. But more important, we see an increase in the efficiency of the relationships among the parties designed to maximize donors and maximize organs from a single donor. This apparatus becomes a biopolitical regime, in which the norm for our dying becomes tied to donation. Every death is considered that of a potential donor, even if only skin and corneas are procured. This new norm is propagated through a series of procedures and policies, with feedback loops for quality improvement. Not only must donors die efficiently, they must be managed so that more donors are available along with more organs per donor. Everything pushes in the direction of more transplants, all done for the good of social functioning. All deaths must serve the greater good. Yet the drive to efficiency betrays the cold ground upon which such practices are founded, and the problematic of needing a dead donor, and a living body, emerges.

rE v E r s i ng  T h E  i r r E v E r si b LE, a nD oT h Er ab su rDiTi Es

One merely has to attend to a patient who has been declared brain dead by whole-brain criteria in order to realize the oddity and absurdity of a notion such as whole-brain death in the care of these unfortunate people, whether the patient will become a donor or not. Even if all protocols and procedures are followed, the practice of organ procurement leads to oddities in practice and, in fact, to absurdities. Margaret Lock, an anthropologist, gives a particularly poignant description of the procuring of organs in her book Twice Dead. The process has become routinized. Lock describes a scene in an operating room (OR) where a patient, recently pronounced legally dead, lies draped from head to toe, sustained by ventilator and medications, fully present as an object, yet hidden beneath drapes and technology. The OR is a place of intense activity; three nurses prepare the instruments, swabs, drapes and other accoutrements; a transplant coordinator is on the telephone; one orderly departs after delivering the “patient,” while another prepares containers for the organs; a senior surgeon stands at the foot of the operating table. He chats

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with his two residents, both women, until the nurses are ready to clothe all three of them in sterile gowns. Two anaesthesiologists confer among the monitors clustered at the head of the table. No one gives more than a brief glance at the body, connected to numerous tubes and lines extending to a battery of monitors, the diaphragm rising and falling to the rhythm of the artificial ventilator.31 The procurement coordinator, formerly a nurse, tells Lock how much she loves her work, “despite the inconvenient hours.”32 Lying hidden before the eyes of the surgeons, nurses, transplant coordinators, and support staff is the patient, who both is dead and is being kept alive. The only caveat to full enjoyment of the work of this coordinator, or surgeon or nurse, for that matter, is the “inconvenient hours,” rather than the oddity of dissecting the living body of someone deceased. The “patient” is hidden beneath drapes, but also hidden beneath the euphemisms of “donating life” and all of the platitudes surrounding campaign drives to increase organ donation. The surgeons deftly and expertly work to expose the patient/donor’s internal organs. In Lock’s example, The senior surgeon leaves the donor to the care of his residents and carries the liver to a bowl filled with ice and perfusion liquid at the side of the room. Here he conducts further, minute dissection of the blood vessels. This painstaking work is designed to ensure success several hours later, when he will be suturing the blood vessels to corresponding vessels in the recipient. The gall bladder, intimately associated with the liver, is delicately separated, black bile flowing out when it is deliberately punctured. The liver is then placed carefully into a large plastic bag with ice and liquid and placed in cold storage until it is transplanted into the recipient, a few hours later, by the same surgical team. . . . The residents meanwhile turn their attention to the kidneys. Here they systematically expose and isolate the blood vessels and the ureter, first on one side and then the other, while the senior surgeon rejoins them at intervals and praises their progress. The kidneys are removed as a pair, then separated and made ready for donation in the waiting bowls; this will be the end of their partnership,

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for they will go to two different recipients. Right and left kidneys, carefully distinguished, in turn will shortly be placed in plastic bags, put into containers, and handed over at the door of the OR to a driver who will transport them to other hospitals. . . . At this point, the delicate and technical part of their work just about complete, people relax and start to talk — all except the senior surgeon, who remains apart, meticulously preparing the kidneys for donation. Watching the delicacy with which the surgeon handles the kidneys and the way an arriving surgeon goes straight over to admire these newly procured, mulberry coloured organs glistening with health, I am reminded that throughout this entire process it has been the organs, and not the donor, on which everyone has been concentrating. The donor is merely a container that must be handled with care.33 The patient/donor not only disappears but is merely a necessary “container” to support the life of the organs, organs which autonomously contribute to life. At the same time, the body is like a coffin in which these living organs will be buried unless saved from their fate of decay by the surgeon. The in-between of life and death lies hidden in plain view once the patient is pronounced dead and her organs are removed. Other oddities emerge in the practice of pronouncing brain death in those whose families refuse donation, or those patients whose organs are deemed unsuitable for donation. Is the patient dead when she is pronounced dead? Or is she dead when the machines are turned off and her heart stops beating? Her heart will continue to beat for a few minutes to a few hours — depending on the patient’s age — after the machines are turned off. Would it be acceptable to send her to the morgue while her heart still beats after the machines are turned off? Or would one send her to the crematorium, or bury her, because after all, she is dead? Although her heart would likely stop before cremation or burial, the question is haunting, nonetheless. For newborn infant-donors, the heart often continues for several hours after brain death has been declared and machines are turned off. Is it legitimate to give a bolus of potassium chloride to stop the heart once the machines are turned off, which would “kill” the patient? But can she be killed if she is already dead? Finally, it is common practice for doctors to await the arrival of family members of a brain-dead patient so that they have the chance of saying

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goodbye before the doctors turn off the machines, and they may even wait for a couple of days. Is this patient dead or alive, while awaiting family? Is the patient dead when pronounced dead, or two days later after the family has arrived and the machines are finally turned off? Transplantation of vital organs is not permitted unless the patient is dead, either by brain-dead criteria or by cardiorespiratory criteria. Most transplantations take place under brain-death criteria, but clearly, patients declared dead based on cardiorespiratory criteria can also become eligible for donation. The supply of organs from brain-dead donors was limited throughout the 1980s, resulting in the University of Pittsburgh’s development of the practice called Donation after Cardiac Death (DCD),34 referred to above, which relies on the cardiorespiratory definition of death. Yet this practice, too, results in absurdities. Once the decision to forgo burdensome, lifesaving treatment is made in the case of a patient who is not brain dead, and once the patient’s heart has stopped and she is pronounced dead, her organs can be procured for transplantation under DCD guidelines.35 Procedures are in place under DCD to ensure that a discussion regarding organ donation does not occur until after the patient or surrogate has decided to forgo the lifesaving treatment.36 Problems have arisen, however, with the proliferation of various protocols and statutes governing DCD in relation to the Uniform Anatomical Gift Act of 2006. Ana Iltis, Michael Rie, and Anji Wall have observed that the UAGA removes significant decisional authority from the patient or the patient’s surrogate and places that authority within the hands of OPOs. For instance, once the patient or surrogate has agreed to a donation after cardiorespiratory failure, the OPO has the authority to trump some measures that might provide comfort to the patient at the end of life, if these measures are deemed to interfere with donation.37 Moreover, patients or surrogates who agree to DCD often do not realize that they will die in the OR, sometimes away from their loved ones. Patients must be placed in the OR to ensure adequate monitoring and prompt removal of organs after death is declared. Sometimes hospitals allow two or three family members to be present in the OR as their loved one dies. However, as soon as the patient’s heart stops and the patient is pronounced dead, they are promptly escorted from the OR, because the surgeons must begin surgery immediately after death, within about five

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minutes. In some instances this period is as short as seventy-five seconds. The usual lingering of the family around the body of a deceased loved one is not possible in DCD, and thus, neither are the usual rituals practiced after the death. Definitions of irreversibility have been manipulated. For instance, Mark Boucek and his co-authors describe a clinical trial in which three heart transplants were conducted following DCD protocols.38 Three infants were declared dead under the irreversible failure of cardiorespiratory function clause of the UDDA. The research protocol necessitated that each infant-donor’s heart stop beating. Each infant-donor then had his or her heart removed, and the heart was placed in the body of another infant. The first infant-donor’s heart was removed three minutes after the patient was pronounced dead. The other two infant-donors’ hearts were removed seventy-five seconds after they were pronounced dead. Until this study, the length of time from the moment the heart stops to the opening of the patient’s body had ranged between two minutes and five minutes. The authors of the study note that the new protocol — of reducing the wait period to seventy-five seconds — was followed at the “recommendation of the ethics committee.”39 The surgeons were able to restart all three donor hearts in the recipients’ bodies. In what sense, then, were the cardiac deaths irreversible (a question asked by Robert Veatch in his commentary on this study)?40 The authors of the study preferred a narrower definition of irreversibility; they argued that the infant-donors’ hearts could not “autoresuscitate,” and thus their condition was considered to be irreversible.41 This study set off a series of commentaries that examine DCD, and raises questions about brain-death as well.

D E a D  Do n o r s  an D L i v i n g  b oDi Es

It should be clear by now that the two definitions of death, brain death (applied to donors and nondonors alike) and cardiorespiratory failure, give rise to practices that are at best inconsistent and at worst absurd. In them we find a marriage of the physiological and the social, or, harking back to nineteenth-century medicine, a union of Bernard’s physiological mechanics and Louis’s social mechanics.42 Lest organ trans-

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plantation become little more than human vivisection, a legitimate authority — the law — must define who is dead. The process of keeping component parts alive requires the management of the organism that has died, where death is the final, irreversible outcome — the final effect in a series of causes and effects. Even in whole-brain death, the organism is not considered as a whole, as an end in itself, but as a set of component organs existing for the good of other organisms. The entire apparatus is founded on the business agreements and policies created to satisfy the running of the hospital. The law and the social apparatus of medical practice structure and dictate what counts as dead. The commonsense observations of the “brain dead” do not unequivocally lead to the conclusion that the patient is dead, however. Doctors and the social establishment of medicine claim special expertise in death and in fact will declare that commonsense observations are wrong.43 I, as a doctor, have made this point to families myself. Yet the structures that both create and sustain our understandings of expertise, as noted above, and that define death lead to practices where the “dead” are kept “alive,” but the “life” of the “dead” is made possible only through the deployment of mechanical “life” support. Of course, these absurdities could be construed as a failure to use our own terms consistently, or as a failure in clarity. Yet even the 1981 President’s Commission attempted to manage these absurdities through political consensus and the law. The practices founded on their report betray their absurdity, because the practices are an effort to capture a fictional, abstract, ideal-type of death as a moment frozen in the body or brains of human beings. The practices that surround transplantation create medical assumptions, values, and beliefs that are fundamentally incommensurable with the assumptions, values, and beliefs of families who are faced with a dying loved one. For instance, the statement “Your husband is dead; we are keeping his organs alive, and we would like you to consider donating his organs for transplantation” make sense within the transplantation community and the larger social apparatus of medicine generally. Yet to the wife, the absurdity of that statement comes into relief after she observes her loved one, who is alive. Moreover, if the patient is actually dead, why does the OPO keep the organs alive? The wife’s judgment is informed by the social practices and conceptual resources available to

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her. “Why would you take his organs? He not only appears to be alive, he is alive.” Such a statement meets all of the standards of the conceptual resources that some families are likely to bring to bear on the situation. So at one level we lack a set of conceptual resources common to both the family and the transplantation community. But the problem is not merely a lack of conceptual resources on the part of the family, lack of communication, or lack of clarity in the use of language. One might claim that better conceptual resources and clearer and more precise language could completely solve the problems to which I am drawing attention. Certainly, to call someone dead could mean, for those in the transplant community, no more and no less than that this patient meets the criteria for brain death and therefore can be considered dead, thus authorizing the uses of her body for transplantation. This claim makes sense inside the web of beliefs of the transplantation community, even though it proves confusing to other groups trained in discourses of medicine, for instance, cell biologists; for them, the cells of the heart or the cells within the digestive tract are still alive, even though the brain is dead. So, one could claim that a more precise language is needed. In a way, the President’s Council, in abandoning the terms “brain death” and “whole-brain death,” was trying to be clearer in its use of the term “total brain failure.” The problematic to which I wish to draw attention is not one of translating concepts or negotiating meanings. It is the problem of the in-between time, a liminal time, in which the goods and norms, both for families and even for the transplantation community, are shifting. I am arguing that several of the goods internal to medicine, and goods negotiated between medicine and other institutions, such as business and health-care delivery agreements, become incompatible with one another when one is engaged in transplantation, and in particular when one is engaged in pronouncing brain death. Denton Cooley’s statement, quoted in the last chapter, sums up the incompatibility of certain basic goods: “the clinician can become too pre-occupied with the rights of the dead, namely the donor. . . . We should not jeopardize the possible survival of the recipient while we are waiting around to make a decision whether the cadaver . . . is dead or not.”44 This shows not merely a conflict of interest but two fundamentally incompatible goods. Even trying to solve the “conflict of interest” problem only superficially en-

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gages the problem and indeed hides the deeper problem. On the one hand, it is a good thing for the doctor to commit to her dying patient to the very end of his life, devoting herself only to the goods possible in dying; it is a good thing to commit to the patient and look out for his good until his entire body is dead, even if he might indeed be or end up brain dead. Medicine, as an institution, seems to hold this kind of commitment — a commitment born of a time when meaning could be found in dying, independent of transplantation. On the other hand, it is also a good thing that a doctor should shift her focus when one possibility is lost and turn toward the other goods that might be achieved, whether those goods be procuring organs, providing support to the family, or assuring proper respect and reverence for the mortal remains of the deceased. Thus, the problematic is metaphysical. A mechanical medicine creates a more subtle form of dualism than any Christian dualism of body and soul, which in turn creates the possibility of this dilemma. For it is the dualism of machine and person, according to which person is found in the neocortex, or in the series of functions of the neocortex, that permits one to say, “The mortal remains are not important, because the person is gone; let us use these remains for some other good.” It is here that we come across the fundamental aporia presented to us by all formulations of death, namely, the claim that what was a good in itself — in this instance, the life of the person — is no longer present. Naming an absence — the absence of the person, which is so essential that it can be named a good in itself — always produces this insoluble difficulty, especially when that absence permits a new way of being toward the body. Death — the absence of life, or the absence of person — permits us to act differently toward the body, and this absence creates absurdity in language, uncanniness in practices, incommensurability in both language and practices, and incompatibility of goods. It is extremely telling that the practices surrounding the care of the dying require efficient and effective management through the social apparatus of transplantation medicine. When formal causes of life and final causes for living are precluded from discourse, one always falls back on the brute force of efficient causation. The efficiency and effectiveness paradigms result in a series of practices that hide the living body beneath sterile drapes and euphemistic language. The legally “dead”

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are kept “alive” independent of their organism, but it is their organs that are kept “alive” despite the “death” of this person. They are kept “alive” for the benefit of another organism, under the watchful stewardship of the social apparatus. Patients die to become donors; donors do not die, but they give the gift of life, where life is understood solely as the immanent continuance of mechanical life. Doctors maintain the mechanical life of organs in order to maintain the mechanical life of the recipient, whose organs are dying. The drive to garner more organs through more effective and efficient procurement hides what is required for the life of the recipient, and that is the death of the donor. The living are parasitic upon the dead. The logic of efficient donation, which strives for the maximization of donors and organs, cannot be resisted under a metaphysics of efficient causation. In the framing of the transplantation community, there is only one way for the death of the loved one to have meaning, and that requires “patients and their families [to have] the opportunity to donate organs.”45 In the absence of a robust telos in medicine, life has no purpose or value in being lost; it can achieve value only insofar as it is given in death to another being who can continue the mechanical function of its own organism. The good of life — including the life of the dying — as its own end is not a possibility.

Qu E s T i o n i n g  Th E  DE a D  b r a i n

A recognition of the absurdities of our current practices animates the most recent flurry of articles questioning brain death. In part, these practices have pushed to the forefront once again the question supposedly settled with the President’s Commission of 1981 and the passage of the UDDA shortly thereafter. As discussed above, in 2008 the President’s Council on Bioethics revisited the question of brain death and the drive either to loosen the standards by which we define death or to abandon the dead-donor rule altogether.46 Whereas the President’s Commission essentially ushered in a philosophical vitalism, while claiming philosophical neutrality, the President’s Council embraced a philosophical stance, acknowledged it as such, and then carefully and clearly reengaged the question. Their prescient change in language from “whole-

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brain death” to “total brain failure” only helps to clarify the problematic rather than to solve it. Still, their careful definition is important in that it helps to bring the aporia into starker relief. The council noted in its 2008 white paper, “Controversies in the Determination of Death,” that use of the term “whole-brain death” “implies that there is more than one kind of death.”47 Brain death also implies that what we are talking about is the death of the cells and tissues of the brain, when in reality we are concerned primarily with the individual and not her brain. Death is not a diagnosis but a “real phenomenon.”48 Here, the council was in agreement with proponents of wholebrain death, such as James Bernat, who claimed that death was a purely biological phenomenon.49 The council stated that “[a]lthough the choice of an appropriate term is important, it is more crucial to maintain a distinction between naming the medical diagnosis of a condition and declaring an individual dead on the basis of that medical diagnosis.”50 In other words, death is a state, condition, or phenomenon of an individual who was once alive, and a set of diagnostic criteria might be articulated that would show the absence of certain physiological signs, which in turn might suggest that the individual is dead. Thus, the council opted for the term “total brain failure”51 to designate the absence of brain function, but left open the possibility that even this may not count as the death of the individual. The council then concisely and admirably gave an overview of the physiology of the organism as a whole, explained in detail the physiological features of the dying human being, and summarized the various ways in which a diagnosis of total brain failure might be possible. It even reviewed the disputes about whether definitive diagnoses and prognoses are possible.52 Its most important accomplishment, however, is not its clarity of language or physiological description, but the philosophical work that animates the two mutually exclusive conclusions to which the council came. The council points us to the question that all along was a philosophical question, but which the 1981 commission skirted for the sake of midlevel physiological principles and consensus. To its question, “Is the human being with total brain failure dead?”53 the council offers two potential answers. The first answer (or, as I will call it, Position One) “rejects the widely accepted consensus that the current neurological standard is an ethically valid one for determining

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death,”54 on the grounds that there is no compelling biological reason to believe that total brain failure is equated to the death of the individual.55 Oddly enough, the proponents of Position One focus on the lack of a biological reason for equating total brain-failure to death of the individual human being, pointing to the work of neurologist D. Alan Shewmon.56 Yet the proponents of Position One do not share with us the way in which a biological reason can answer a philosophical question. The second position (Position Two) accepts the consensus that a human being is dead when total brain failure is diagnosed.57 Yet Position Two recognizes the need for clarification and takes the recent challenges to “whole-brain death” as “opportunities to strengthen the philosophical rationale for the neurological standard.”58 Position Two finds no compelling reason to change the definition, with the exception of acknowledging that “whole-brain death” leads to confusion and that “total brain failure” provides much needed clarity. In addition, Position Two occasions an opportunity to “develop a better rationale for continuing to use the neurological standard to determine whether a human being has died.”59 In order to explain why “total brain failure,” properly diagnosed, can serve as sufficient grounds to conclude that the human being in question is dead, the proponents of Position Two develop a philosophy of neediness. “All organisms have a needy mode of being.”60 The organism has need of oxygen and nutrients and has the ability to satisfy those needs by engaging the world and reaching out into its environment.61 Position Two continues: The work of the organism, expressed in its commerce with the surrounding world, depends on three fundamental capacities: 1. Openness to the world, that is, receptivity to stimuli and signals from the surrounding environment. 2. The ability to act upon the world to obtain selectively what it needs. 3. The basic felt need that drives the organism to act as it must, to obtain what it needs and what its openness reveals to be available.62 However, the “vital work”63 of the organism as a whole is compromised in total brain failure. Thus, the totality of total brain failure is central to Position Two. While self-consciousness and felt awareness are important

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to the life of a human being, it is insufficient to say that the absence of consciousness/awareness is equivalent to the death of the human being. Even a patient in the persistent vegetative state (PVS) “tracks light with his or her eyes, recoils in response to pain, swallows liquid placed in the mouth, or goes to sleep and wakes up,” and “such behaviors — although they may not indicate self-consciousness — testify to the organism’s essential, vital openness to its surrounding world.”64 Even in PVS, the neediness of the organism is apparent, independent of self-awareness. Self-preservation in the form of the automatic function of breathing and circulation demonstrates that total brain failure is necessary if we are to say that the individual is dead.65 Shewmon, in his analysis of the President’s Council report, notes several failures of Position Two. First, the wholeness articulated by Position Two is never defined and seems to privilege “need” understood solely from the perspective of breathing and consciousness. Why does the council not hold that the fundamental vital work of the organism as a whole includes such things as self-development, internal homeostasis, orderly cell turnover, or teleological repair?66 After all, does not a patient with total brain failure, supported by a ventilator, continue to fight infection, secrete hormones, repair broken skin or bones, and grow hair and nails? Second, Position Two conflates the “physical necessity for staying alive (in the wild) with the logical necessity for being alive (ontologically).”67 The cessation of the ability to meet physical needs in order to stay alive may lead to death but is not death per se. Shewmon comments, “The white paper blurs these critical distinctions, forsaking logical rigor.”68 Suppose, Shewmon argues in a brief exercise in logic, that A is equivalent to awareness and B is equivalent to breathing. The absence of the two together represents total brain failure: absence of awareness represents death of the neocortex, and absence of breathing represents death of the brain stem. “The logical counterpart of ‘either A or B suffices to prove life’ is ‘lack of both A and B is necessary to prove death.’ ”69 But what the holders of Position Two actually assert is that “lack of both A and B is both necessary and sufficient to prove death.”70 Yet the holders of Position Two, Shewmon claims, have not demonstrated that absence of A (awareness) and B (breathing) are sufficient to conclude that the human being who meets these conditions is in fact dead. Conditions for death must be both necessary and sufficient.

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A more salient critical point, in my estimation, is that both Position One and Position Two are attempting to get at the “real phenomenon” of death. Taking death as a real phenomenon seems to mean that death is a real state of the being of an organism that was once alive. The phenomenal aspects of death are the manifestations — the signs — of this real state of the being. The two positions seem to agree on the concept of death — death of the organism as a whole — and on the real state of affairs of a once living being. What the two positions disagree on, then, are the criteria by which one can be certain that the state of affairs of the being in question corresponds to the concept. It appears that the two positions do not disagree on the necessary criteria that warrant the claim that this being is dead; they disagree on the sufficiency of the criteria that would warrant an affirmation of correspondence between the concept of death and the actual state of affairs. Engelhardt points out that what we are left with is a series of tests designed to elicit signs for which we want the false positive rate to approach zero,71 but also with a positive predictive value of 100 percent. The problem is that no test has a false positive rate of zero and a positive predictive value of 100 percent. So if we come to the judgment that the state of affairs of this body corresponds to the concept of death, this judgment will always have some degree of faith that motivates the judgment. No absolute certainty is possible. Making the situation more complicated is that both positions are seeking a thin line in time and in space between the processes of life and the processes of decay. What signs might indicate death as the state of affairs? Putrefaction, smell, and distortion in appearance come to mind. Yet these signs do not serve the ends and purposes for which we normally would like to say “this human being is dead,” whether those ends and purposes be to name an heir, to execute the will, to bury the body, or to transplant organs. Thus, given that we have purposes that require earlier detection of the state of affairs, namely, death, we turn to the absence of the signs of life, and to determining when the manifestations of life are not present. Tests that elicit signs of life indicate the presence of a state of affairs that corresponds to the concept of life. Tests designed to elicit the signs of life are used to diagnose death. The claim is that absence of the signs of life is indicative of the state of affairs that corresponds to our concept of death, leading us to another insoluble difficulty.

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I have claimed in other parts of this book that this has all along been the problem. Once we have moved to a concept of life built upon death as the known ground of our truth-claims in anatomy, and once we understand the motion of matter in physiology to be the series of immanent causes and effects, we are left with Bichat’s statement, “Life consists in the sum of the functions by which death is resisted”;72 Bernard’s conclusion that life and death have no meaning in physiology;73 Cooley’s statement that life and death are too vague to hang our practices on;74 and Guyton and Hall’s statement that “the human being is actually an automaton, and the fact that we are a sensing, feeling, and knowledgeable being is part of this automatic sequence of life.”75 Here we encounter the aporia in the practices of pronouncing total brain failure as the absence of signs of life. All such practices fail to demonstrate the fundamental significance of death for the living or for the dying. In other words, the philosophical argument is really about when the concept of death corresponds to a reality of death and what the necessary and sufficient criteria are by which we can say that the correspondence between the concept and reality is adequate to pronounce the arrival of death. But any correspondence notion of truth, especially where correspondence is between the concept of death and the absence of certain phenomenal manifestations of life, requires some leap between concept and reality. It is at the brink of this aporia that our practices conflict, clarity no longer clarifies, and language breaks down. Here at this brink, the language and practices of procurement become eerie, uncanny, and disturbing. Rather than pausing before the aporia and questioning our practices, we seek a better way to secure them. Try as it might to untangle the definition of death from justifications of transplantation, the President’s Council failed.

a ba n D o ni n g  T h E  DE a D  b r ai n

Shewmon is not merely a critic of Position Two of the President’s Council report. He is one of several intellectual leaders of the move to dethrone the definition of death as whole-brain death. He does so, however, for reasons that are very different from those of most critics. In contrast to members of the 1981 President’s Commission or James Bernat,

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for instance, Shewmon maintains that the brain does not integrate bodily functions so much as modulate those functions. With respect to the body, vitality and unity are constitutive of the whole, rather than the work of the brain. As Shewmon argues, the parts are not merely a set of entities in their own right that happen to be coordinated by some other entity external to the set; rather, they are only conceptually, not ontologically distinct, each existing not “in itself” but only virtually, as a component of a higherlevel entity. Each part both contributes to and is subordinated to the transcendent unity, and the equality of (the) ontological level of “part-hood” (as opposed to “entity” or “substance”) is not contravened by the evident multiplicity of ways of contributing to the higher unity.76 Shewmon’s point is that the brain, while clearly essential to some important features of life, is still subordinate to the unity of the whole. Shewmon’s holism is similar to a vitalism. Integration is nonlocalizable in the body.77 Oddly enough, his holism is more robustly biological than that of Bernat, who argues for brain death from what he calls a biophilosophical point of view, where death is primarily a biological phenomenon.78 Shewmon’s position tends toward a mysterious unity of integration, which is constitutive of physiological unity. The whole is greater than the sum of its parts. Considered as a position to be taken by society, Shewmon’s holistic vitalism is untenable for many practical reasons. One is the fact that metaphysical consensus in our society cannot be reached, and another is that his vitalism would preclude society from engaging in transplantation. For purposes of transplantation, it is of paramount importance to define death. For those who have held and continue to hold this position, the brain is the one place to look for certainty of death. For these thinkers, the task is to be clear about the definition of death, to translate that definition for the layperson, to openly delineate “the choice of a criterion of death that shows that the definition has been fulfilled,” and to ensure “the selection of tests that indicate with perfect validity that the criterion is satisfied.”79 Yet what philosophically animates the definition that is confirmed by the tests — tests which have some sort

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of validity — is never explained, except by a desire to transplant. Moreover, all nominal definitions find operational criteria that allow further revisions of criteria and refinement of the definition. The logic is almost entirely circular. The more important question is what philosophically animates the definition to begin with, a question that cannot achieve clarity because it begs metaphysical questions and answers. Bernat has spent much of his career trying to articulate a holism in which the whole brain acts as the integrating locus of control.80 He argues that his version of holism — treating the organism as a whole — is a functional holism: a series of biological subsystems are directed toward the maintenance of the highest of the systems, namely, the critical system, the brain as a whole. In a way, this holism fits with a physiological holism. It includes a teleological — or better, a “teleonomic”— ordering of systems. But it is a spatializing and localizing holism, where unity is housed in a part, namely, the brain; for, as Bernat claims, the brain as a whole is the locale of the integrating principle of cognitive and physiological life, and therefore it is best suited for a definition of death. Curiously, Stephen Napier, a Roman Catholic bioethicist, accepts this secular definition of death, while not necessarily accepting the metaphysical assumptions that animate it.81 Napier falls into the holism camp, but siding with Bernat against Shewmon. He also locates death in the whole brain. Bernat attempts to ground his version of brain death in biology; Napier attempts to ground his version of brain death in the idea of the absence of the rational soul, which acts to integrate the organism as a whole, as the principle of organization. Like Bernat, Napier’s approach has a teleological dimension, but his, of course, is a teleology of transcendence. For Napier, following a classical and Christian understanding of soul, the soul is the principle of organization. In this sense, Napier’s position is congruent with Bernat’s principle of integration. For both, the brain is the locus of control of holistic physiology and the seat of the organizing principle of the whole. Against positions such as those of Napier and Bernat, Robert Veatch agrees with Shewmon that the definition of death as brain death is untenable, but his critique is very different from Shewmon’s. Veatch calls any view that insists on the presidential commission’s definitions of death (especially a view such as Shewmon’s or even Bernat’s) a “strange animalistic view,”82 in which bare biological life is deemed most valuable.

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Yet what we humans find most important and valuable is not bare, animalistic life. Veatch’s concern is that mere biological life has no significance for us if the mental or biological capacity of determining value is destroyed. Thus, Veatch concludes, the biological capacity of the higher brain is more important than brain-stem or whole-brain functioning and should be the locus for the determination of death. He also claims that the 1981 commission adopted a position at odds with the JudeoChristian tradition83 (which Veatch himself embraces) because brainstem life — the ability to gag, to use Veatch’s colorful description — is merely an animalistic view of the human being.84 Thus, Veatch formulates his position in terms of failure of the higher brain (the neocortex). Veatch’s political libertarianism, however, requires that “[p]eople should be permitted to examine their own religious and philosophical traditions and adopt the positions that are most plausible to them.”85 He therefore argues that a conscience clause should be adopted with respect to decisions about death to avoid violating religious or philosophical traditions other than the Judeo-Christian tradition.86 Veatch’s argument is not very far from that made by Michael B. Green and Daniel Wikler.87 They argue that brain death can be thought of as death, but that we think of it as death because we mean that the person is dead. In other words, because we are concerned with the death of persons, not brains, we can say that brain death, now meaning higherbrain death, is the death of the person. On Green and Wikler’s account, the question about death, then, is a metaphysical question — the death of the person — and the “purely ‘biological’ question is how this state can be clinically identified.”88 On this account, the definition of the death of a person and the definition of higher-brain death are necessarily close. For Veatch, the emphasis is on the biological features of the higher brain. For Green and Wikler, death of the whole brain is problematic not for biological reasons but for ontological reasons. After all, we are concerned with the death of a person when we say that Jones has died. One more aspect of the arguments described above is important for my analysis. Both Green and Wikler’s position and Veatch’s position bring into relief the crucial assumption that the locale of death is in the brain. For Veatch, that means that the mind-body unity has been disrupted.89 For Green and Wikler, “the most likely account of personal identity serves to show that after brain death the person who entered the

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hospital has literally ceased to exist.”90 Death, then, can be seen when the higher brain, or more accurately, the neocortex, is dead. Thus, death is found in the space of the brain. A more accurate definition might be that death occurs when the neocortex ceases to function — when neocortical failure occurs. But then this definition becomes more abstract, in suggesting that persons are persons in the functioning of the neocortex. The space of person is not in the brain so much as in the functions of the neocortex. For when the neocortex ceases to function, whatever life is present “could not be ours,” according to Green and Wikler.91 In a way, then, persons occupy the space of the neocortex, or more abstractly, persons occupy the intangible space of neocortical function. Death can be found by looking to the space of the neocortex or by looking to the failure in functionality of that part of the brain.92 The important point about determining death is in the functioning of the neocortex; if it is functioning, the person is present, and if it is not, death is present. Like Position Two of the President’s Council, we fail to escape the problem of finding a test that measures up to a metaphysical definition of death, on which the positions of Green and Wikler or of Veatch are founded. The three positions I have discussed — death understood as cessation of cardiorespiratory function (Shewmon’s death of the organism as a whole), death understood as whole-brain death (Bernat and Napier), and death understood as the death of the person (Veatch, Green, and Wikler) — correspond to three important bounded zones as described by Linda Emanuel.93 Emanuel argues, in a novel approach to the issue, that the current definitions of death assume that death is a state. But, she claims, death cannot be a state. “Once life is lost the individual is not and therefore cannot be in any state.”94 Here, Emanuel partly misunderstands those who make the claim that death is a real phenomenon, or a state. Although a person, or individual — Emanuel’s preferred term — cannot be in a state of death, a body certainly can be said to be in a state of death. A body can be in a state of death or of living. But Emanuel’s other main point here, with which I agree, is that life is in flux, and as life dwindles down, one is still in the state of life. But just as life can be the state of flux of a body, so death can be the state of flux of a body, where death is understood as the flux of decay. Thus, there is no bright line between life and death, or between states of life and states of death of bodies.

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Emanuel’s central point, however, is this: because dying is a state in which life dwindles, and because there is no discernible line between life and death, and because our moral commitments to the living and dying are founded on metaphysical understandings related to life and death, we should speak of bounded zones of death. The lowest end of the bounded zone, Emanuel argues, would be cardiorespiratory death, where bodies with cardiorespiratory cessation would be considered dead. The upper bounded zone would be those for whom higher brain function has ceased, that is to say, those in a permanent vegetative state. Different people, by appeal to their own metaphysical and moral commitments, would be in a position to deploy their understanding of life and death, and act toward the bodies of their loved ones according to those commitments. In other words, those who believe that cardiorespiratory cessation is death can continue to care for their loved ones right up until that moment. Those who believe that whole-brain death is death can choose to stop caring for their loved ones and allow transplantation or allow them to be buried. Those who believe that their loved one in a permanent vegetative state is dead can likewise choose to donate his organs. Defining death in this way would move the focus of attention away from the body and into the community, in that various communities can respond to these various conditions in a manner that agrees with their commitments. Another formulation that obviates the need for commitment to a robust metaphysical position is that of Franklin Miller and Robert Truog, and, most recently, Dan Brock.95 They propose abandoning the dead donor rule altogether, and in effect, they accept the cardiorespiratory standard for defining death. They advocate a medicine that eschews notions of metaphysics and notions of teleology. Their position is not so different from that of Emanuel, who accepts the dead donor rule and advocates choices made by decision makers at any of the three levels, or bounded zones, of what counts as death. For Miller, Truog, and Brock, the choice is essential but takes shape at an altogether different level. How does one engage in transplantation? Their answer is by placing the emphasis not on a decision about death, but on a decision about what is morally required of us — about the altruistic choice to give a gift to other lives.

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On Miller, Truog, and Brock’s view, transplantation becomes a form of justified killing. It is justified because it has been authorized by the person making the choice: he or she is the proper sovereign, who by choice can remove the body of the living from the protections of the law. The oddities of pronouncing brain death disappear, because the braindead patient on a ventilator is recognized not as dead but as clearly alive. The organ procurement surgeon is engaging in justified killing, just like the physician who assists in legally sanctioned physician-assisted death. There is no need to wait for death, and thus DCD procedures are moot. Similarly, patients with PVS are not dead but are potentially candidates for transplantation. Rather than finding death occupying the same space as the person — that is to say, the space of the neocortex, or the functioning of the neocortex— Miller, Truog, and Brock have only a decision standing between life and death, or rather, between life and donation. In each formulation of death described above, there is no way to account for what is lost in death; what is lost does not submit to measurement or accountancy. Thus, life is demeaned in the dying of people under the watchful eye of governmental, regulatory, or economic structures of hospital-OPO agreements. Under the medical drive to measure and control, there is no time to pause with the dying before the gravity of living and dying. There is no calculus — not even one proclaiming donation as the gift of life — that can account for what is lost in the rush to donation, in the seventy-five seconds between death and donation. All matter plays itself out toward stasis, and all mechanism ends at its terminus, death. Any attempt to measure or control the process of dying inevitably demeans it. For physiological medicine, it is not so much a question of life and death that is important, as noted by Bichat and Bernard, or Cooley and Guyton. Instead, life or death hinges on the question of consent, choice, and decision. From 1968 to the present, the important question was, where is death — in the brain or in the body? As such, the dead body, and then the dead brain, became the normative body and the normative condition for defining life and death. Death, like the person, could be found in the neocortex, or in its functioning. Yet on Emanuel’s position, as well as Miller, Truog, and Brock’s, the person is found in the capacity to decide, in the possibility of decision. We now see a shift

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from death and personhood found in the space of the brain to death and personhood found in the abstract space of sovereign decision. Who gets to abandon those who are living to death? Who gets to set them outside the protections of the law? On Miller, Truog, and Brock’s argument, we do not have to wait for death to arrive in the body or the brain, and therefore more patients can become candidates for donation; more patients will have the “opportunity to donate organs.”96 All that is left is the creation of proper mechanisms to assure that the proper authority is making the decision. Decision is what distinguishes life and death. The sovereign, as of old, decides who deserves the normal protections of life and liberty afforded by the law within the bounded zone of the city.

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chapter

7

The Sovereign Subject and Death

Thus far I have claimed that, on the one hand, various attempts to redefine death — whether in the 1980s or in recent years — turn to physiological ideas to either define death or to define criteria by which one could claim that an individual has died, although several of these partisans still appeal to a metaphysical holism or vitalism. On the other hand, I described another group that finds all physiological definitions problematic and instead emphasizes choice and consent, thus moving away from finding a locus of death in the body, or in the brain, and allowing choice to enter into the defining of death. Linda Emanuel, for example, would allow families to determine whether a family member is dead by making their own choice of physiological criteria, based on their (presumably) shared metaphysical and moral commitments.1 If the family believes in a kind of vitalism, then it can decide that the patient is not dead until there is cardiorespiratory death. If another family believes that there is no hope for a return of the “person,” then that family can decide that a patient in a persistent vegetative state (PVS), for example, is dead. Franklin Miller, Robert Truog, and Dan Brock suggest that surrogate decision makers, such as the patient’s families, be allowed to decide whether their loved one should be allowed to die, or rather justifiably killed, in order for them to “give the gift of life” in supplying organs for transplantation; for Truog, killing and allowing to •    197

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die are the same kind of action.2 Miller and Truog justify their position by claiming that we already participate in killing patients when we remove them from ventilators, and any plain-sense interpretation of wholebrain death donation and donation after cardiac death is really justified killing, because death really is cardiorespiratory failure.3 A comment by Daniel Callahan seems apropos here: “The only evil greater than one’s personal death is increasingly taken to be the loss of control of that death.”4 Where Callahan understands this control in terms of the ability to psychologically appropriate one’s death by rejecting technology, here, the control of one’s death in choosing death is similar to that of a patient who chooses physician-assisted death, or suicide. Miller and Truog embrace assisted death as justified killing, a form of taking ownership for one’s death.5 Callahan points out that we suffer under the illusion that one can know when to say “enough is enough” for one’s self;6 but now, in many forms of justified killing, we are dependent on others to say when enough is enough. In choosing to give the gift of life, death is about decision, whether one chooses one’s death or someone else chooses one’s death when one cannot choose for oneself. The Harvard Ad Hoc Committee in 1968 called for a change in the definition of death for two reasons: to alleviate the burdens on patients, families, hospitals, and society in caring for the irreversibly braindamaged, and to diminish controversy in organ transplantation.7 In a 1997 essay, Truog reframed the question of death in the following way: These two issues [reasons given by the Ad Hoc Committee] can be subdivided into at least four distinct questions: 1) When is it permissible to withdraw life support from patients with irreversible neurological damage for the benefit of the patient? 2) When is it permissible to withdraw life support from patients with irreversible neurological damage for the benefit of society, where the benefit is either in the form of economic savings or to make an ICU bed available for someone with a better prognosis? 3) When is it permissible to remove organs from a patient for transplantation? 4) When is a patient ready to be cremated or buried?8 Whereas for the Ad Hoc Committee, the proclamation of death was the only permissible way to alleviate economic and family suffering and to

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increase organ donation, Truog parses the question differently: death does not even appear in his analysis. Death is buried in decision — in the possibility of choice. Truog thus opens up a space between life and death, and this is the space of decision. What are the conditions for the possibility of this kind of freedom of choice and consent? The assumption is that the “self can . . . understand technology well enough to know when and how in the course of dying to find medically the just-right moment to halt it.”9 Not only can the self know when to reject technology, it can know when to embrace its own dying. Yet for Truog, it is not a choice of the self for the self; when there is no self to choose for the self, we encounter a political and legal dilemma. Truog’s position is tied up with questions that have animated philosophical liberalism but are now turned on their heads. In liberalism the question was what forms of life are deserving of liberty. For Truog, the question is what form of liberty is required such that an individual can either abandon itself from, or be abandoned from, the protections normally afforded to the living by the law. And if liberty is not possible, life is not in need of protection. Foucault observes that “[f ]or a long time, one of the characteristic privileges of sovereign power was the right to decide life and death.”10 As quoted earlier, the sovereign “evidenced his power over life only through the death he was capable of requiring.”11 In contemporary liberalism, the sovereign is the self; and the self is this sovereign’s only subject. The self is both sovereign and subject of that sovereign. Truog and those who share his views place the emphasis on choosing when it is legitimate to manipulate one’s living body for the benefit of itself, or for the benefit of another living body, or for the benefit of the many in a situation of scarce resources. The hard part of the argument is finding the sovereign, especially in conditions where patients have sustained higher brain injury and are comatose. Thus, Truog shifts the focus from a question about the metaphysics of life and death to a question about politics; or perhaps better, metaphysics has become politics and the power to effect change, since the question is now one of finding someone authorized to choose. This space of choice, the space constituted by liberalism, then, results in political battles. These are not battles carried out on the unstable ground of metaphysics; rather, the battles are

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conducted and the decisions are made in the stable space created by liberalism, the secular state. The point that there is a relationship between the political and the medical is not controversial. What is controversial is the claim that follows from this, namely, that contemporary medicine always has been about the task of defining life. That is to say, medicine has been about defining what kind of life can be set apart from the protections afforded in the polis. Truog merely brings out questions already present at the heart of liberalism: Who can be abandoned, not by virtue of death, but by virtue of decision, from the protections afforded by law? What people can be justifiably killed because the sovereign has set them outside the law? The ground of decision is not the metaphysics of persistent vegetative states, or brain death, or personhood. Instead, the ground and origin of these metaphysical discourses is the political decision that is first made. No condition brings this state of affairs into relief more clearly than PVS, where sovereignty is in question and where decisions about life and death must be made. Indeed, no spectacles demonstrate more clearly the way in which life and liberty and law — that is to say, death and choice and politics — have become intertwined, than those surrounding Theresa (Terri) Schiavo in the United States and Eluana Englaro in Italy. Truog’s position, while helping to create an orderly means to efficiently promote the life of the living, actively promotes the death of the dying. In order to explicate the rise of politics over metaphysics, or rather, the transmutaton of metaphysics into politics, we must explore some political philosophy in its relationship to medicine.

t he  p o l i ti c s  of  l i fe  i t s e l f

Eluana Englaro died on February 9, 2009. Years before, her doctors had diagnosed her as being in a persistent vegetative state (PVS) and concluded that, because the condition was irreversible, she was in a permanent vegetative state. It should be noted that “persistent vegetative state” is a diagnosis but that “permanent vegetative state” is a prognostic descriptor. On several occasions, Englaro’s father requested that his daughter be allowed to die by removing her feeding tube. Truog would call this justified killing. In 1999 and 2005, court cases were held to

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determine if Englaro’s feeding tube could be stopped at the request of the patient’s father. On July 9, 2008, the Milan Court of Appeal allowed her feeding tube to be removed. The Italian Parliament intervened, claiming that the Milan Court of Appeal’s decision was changing Italian law; the case was thus moved to the highest court in Italy. The Vatican also mobilized, aligning itself with the center-right government, and prominent officials within the Roman Catholic Church argued that Englaro should be kept alive. Englaro’s father was granted permission to remove the feeding tube by the highest court. However, a decree was issued by the Italian prime minister on February 6, 2009, that would have forced feeding to resume for Englaro. Italy’s president refused to sign the decree, and Englaro subsequently died, seventeen years after sustaining her brain injury in a car accident. The withdrawal of Englaro’s artificial nutrition and hydration resulted in extensive legal and political activity at every level of Italian government.12 The same is true of Terri Schiavo; no such case in the United States has triggered more political and legal activity. All three branches of government at both the state and federal level became involved.13 Terri Schiavo collapsed on February 25, 1990, perhaps from a potassium imbalance, and experienced severe hypoxia with resultant anoxic brain injury. She was in a coma for several months and then emerged with a sleep-wake cycle, and with no evidence of awareness of herself or her environment. She was treated aggressively at first, but over the ensuing months and years of her life, she showed no improvement. Four months after her injury, her husband was made her legal guardian without objection from Schiavo’s parents. She was unable to swallow without risk of aspiration, and a percutaneous endoscopic gastrostomy (PEG) tube was placed in her stomach so that she could receive nourishment. By the end of 1990, Schiavo was diagnosed as being in PVS, which had not been thoroughly defined at the time. PVS is not easy to diagnose. It requires that one take into consideration multiple factors such as age, mechanism of injury, and length of time without recovery. In a Multi-Society Task Force study of cases of patients who met the definition of PVS, patients with nontraumatic brain injury who showed no signs of recovery at three months had only a 1 percent chance of good recovery or moderate disability.14 If the condition persisted beyond six months, there was no chance, statistically

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speaking, of good recovery or moderate disability. While both Englaro’s and Schiavo’s injuries predated these guidelines, physicians were able to confirm that both were in PVS and to confirm that, given the length of time they were in the state, their likelihood of recovery was virtually nonexistent. Another piece of information not available at the time of either Englaro’s or Schiavo’s original injury was that no patient has ever recovered from PVS after fifteen years in that state. Schiavo died slightly more than fifteen years after the original injury, and Englaro died shortly after seventeen years. Schiavo’s husband, Michael Schiavo, and her parents, Mr. and Mrs. Schindler, worked well together in the early years after her injury. However, by the mid-1990s, Michael Schiavo began to have doubts about continuing to feed his wife through the PEG tube. The relationship between Michael Schiavo and the Schindlers became strained when Michael Schiavo decided to withdraw the PEG tube and the feeds. Since no consensus could be reached among family members, he petitioned the guardianship court of Florida to function as a proxy decision maker for his wife, in order for an independent person to determine if lifeprolonging medical measures should be discontinued.15 Rather than settling the question of Terri Schiavo’s life within the boundaries of the home, the political apparatus of the courts was brought in to settle the question of sovereign decision. In 2000, a trial was held to determine what Terri Schiavo would have wanted to be done and to determine the extent of her brain injury. Both Michael Schiavo and the Schindlers presented witnesses to support their respective positions. The first question was to settle on Terri Schiavo’s diagnosis and ability to make her own decision. On this question, Judge George Greer found that she met the statutory definition of PVS and that she was in no position to answer for herself. Since Michael Schiavo had given up the right to make decisions on behalf of his wife, the second question was whether Terri Schiavo had made statements to friends or family about what her wishes might be if she found herself in just such a state. The judge heard testimony from three witnesses who had participated in prior conversations with Terri about this question. Based on this testimony, the judge determined that there was clear and convincing evidence that Terri Schiavo would not have wanted

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to be maintained on a feeding tube if she were ever neurologically devastated.16 The judge ordered that her feeding tube be discontinued. However, the case did not end in 2000 when the judge made this decision. Instead, Terri’s parents appealed and through the appeals process presented several statements from doctors who claimed that Terri was not in PVS. In 2002, another trial was held in which two doctors retained by the Schindlers and two doctors retained by Michael Schiavo, in addition to a court-appointed doctor, gave testimony. The two doctors retained by Mr. Schiavo and the court-appointed doctor all agreed that indeed Terri Schiavo was in PVS. The judge again ordered the PEG tube to be removed. However, in October 2003, six days after the judge made his decision, Terri Schiavo’s feedings were resumed after the Florida state legislature passed a law giving Florida governor Jeb Bush the power to reinstate Terri Schiavo’s feeding tube. Michael Schiavo appealed this decision to the Florida Supreme Court, which ruled in September 2004 that the Florida legislature’s decision to authorize the governor to replace the tube was unconstitutional. The PEG tube was scheduled to be removed in March 2005. This order was carried out, despite multiple attempts by the administration of President George W. Bush and the U.S. Congress to have the PEG tube reinstated. Terri Schiavo died on March 31, 2005. Both Schiavo and Englaro came to occupy a line that demarcates the inside of the polis —where they would deserve the protections of the law — from the outside of the polis — where they would not receive the protections normally afforded by the law. Social liberals and social conservatives fight about this line of inclusion and exclusion and about who has the authority — the sovereignty — to abandon a human being by placing her beyond those protections. Bare life is fully politicized, whether one accepts that bare life deserves protections or does not. David Brooks, an editorialist for the New York Times, makes the claim that social conservatives tend to seek to protect bare life.17 Brooks’s point hints at something important in American society: social conservatives will promote governmental intervention in cases such as Schiavo’s. For instance, an article in the New York Times quotes the president of the Family Research Council, Tony Perkins, commenting on the court decisions on the Schiavo case: “It is a tragic, unfortunate but avoidable event

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that should awaken Americans to the problem of the courts. It is no longer theoretical. It is life or death.”18 In the same article, Dr. James C. Dobson, from Focus on the Family, an evangelical Christian group, states that judges who would not halt the removal of Schiavo’s PEG tube were “guilty not only of judicial malfeasance — but of the coldblooded, cold-hearted extermination of an innocent human life.”19 Both of these statements link the power of life and death with the power of the courts, the power of sovereign decision. Social conservatives, then, politicize bare life, the mere life of each body within the body politic. In modern conservative politics, bare life has in effect become the good life. What matters most is that bare life is the foundation for the good life. The impulse that conservatives have in protecting bare life, then, is no different from the impulse held by the first social contractarians, namely, the protection of those without political status from those with the power to define life and death, or life unworthy of life. Thus, whether Brooks realizes it or not, life and death have fluid rather than static borders, and these boundaries are political — biopolitical — and not clearly metaphysical boundaries. Brooks further claims that whereas social conservatives are interested in bare life, social liberals tend to focus on quality of life and notions of the good life. In other words, for social liberals, the good life becomes the foundational justification for possession of bare life. That is, social liberals tend to focus on liberty — the freedom to choose. On the one hand, for social liberals, there is a potentially large gap between the good life and mere life, for there are many kinds of life that would be worse than death because there is no liberty to pursue the good life. On the other hand, the result is that social liberals politicize the type of life that deserves protections under the law. If one can choose, if one can be one’s own authority, one’s own sovereign, then one’s life deserves the protections afforded under the law. If one cannot choose, the protections afforded those with bare life come into question. Thus, the absolutely thin line that the social conservatives see between bare life and the good life becomes, in one sense, a large gap for social liberals because there are many kinds of life that might be worse than death, kinds of life that we may not wish to experience. But in another sense, the gap for social liberals is as thin as it is for social conservatives. The oxymoron for social liberals is that the only forms of life deserving

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of the protections of the political life are those that can already enjoy the good life — that is to say, those who can and do choose life — within the boundaries of the polis.

of  l i n e s  a n D  l i fe ,  a n D s overeign t y

In two prominent essays, one published in the Annals of Internal Medicine and the other in the New England Journal of Medicine, preeminent figures in bioethics and medical law have examined Schiavo’s case. Joshua Perry, Larry Churchill, and Howard Kirshner provide an excellent explication of PVS, an analysis of the legal aspects of the case, and an argument from ethics founded on the principle of autonomy and self-determination, as the ethical and legal bedrock of Western traditions of law and morality.20 George Annas provides an incisive, rational, and strongly argued position on medical law in relation to the powers of government.21 Each of these analyses is cogent, logical, and entirely consistent with legal and ethical precedent in contemporary Western societies generally, and the United States specifically. Especially noteworthy is that in each, the clarion call is for determination of the self; in Western politics the sovereign is sovereign over one subject, himself — a sovereign subject. It is because Terri Schiavo and Eluana Englaro cannot be their own sovereigns — precisely because they cannot be rational agents who can choose — that a no-man’s-land between life and liberty opens up for them. There is no sovereign who can set Schiavo or Englaro apart from the normal protections of the constituted law. Or, to again recall Foucault’s words, the sovereign, if truly sovereign, must be able to demonstrate his “power over life . . . through the death he [is] capable of requiring.” To illustrate the opening of the no-man’s-land, I draw attention to a point made in Judge Greer’s decision in Schiavo’s original case in 2000. Remarkably, Schiavo’s medical condition had not worsened at the time of her husband’s decision to begin court proceedings to have her PEG tube removed. There was no new issue that would have put her at risk of death. The time necessary for a firm diagnosis of PVS had elapsed years before. The new criteria for said diagnosis had been published in 1994, four years after Schiavo’s initial injury and about six

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years before the first court proceedings.22 Nothing new was at issue but the power to decide life and death. In essence, then, the judge was ruling that at least since 1994, Schiavo had been in this state between life and death, not able to live the good life, able only to live a bare life. In taking this decision, the judge did something else. Terri Schiavo had a bare life that could be sustained only with the assistance of machines and the love and care of her family and nursing staff. For social conservatives, this means that she deserved the protections of political life. Yet she did not possess the good life, as many, and perhaps most social liberals, would define it. What was at stake was the decision of life and death. Nothing had changed medically to call her life into question, even in the passage of time between 1994 and 2000, when the first decision was reached. Nothing had changed scientifically, and, more important for our discussion, nothing had changed in terms of her higher brain. Her neocortex was dead all along. In essence, the judge was saying that all along, Terri Schiavo had been in a state between a bare life that is not yet dead, and the good life that is already dead for her. She was in a no-man’s-land, suspended between life and death. The decision excludes Schiavo from bare life because she does not have the possibility of the good life. The boundaries of what constitutes bare life become a matter of law and legal decision; bare life becomes indistinguishable from the decision; biological life becomes indistinguishable from legal decision.23 For social liberals, the only form of life deserving the protections afforded to bare life is the form of life that already has possession of the good life. Thus, bare life is equally politicized in the socially liberal construction as it is in the socially conservative construction. For social liberals, the important question is, Has the proper sovereign made the decision of life and death? What is most ironic about the social liberal move to define, not life, but the quality of a life, is that this is also what the social contractarians were attempting to do by creating the conditions for the possibility of the good life. Thus, the decision between bare life and the good life is precisely what links life and death together. For the social conservatives, bare life is deserving of the good life; for social liberals, the possibility of the good life is deserving of bare life. Both are engaged in deciding what constitutes the good life

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and what constitutes the life that is unworthy of life. Decision is, in a way, the line between life and the good life, or between death and the life unworthy of life. Thus, social conservative attempts to politicize bare life are already linked to social liberal attempts to make the good life the constitutive condition for the protections afforded to bare life.

t e c h n o l o g y,  p o l i t i c s,  a n D t he cat ho lic c hur ch

In 2007, shortly after Terri Schiavo’s death and shortly before Eluana Englaro’s death, the Congregation for the Doctrine of the Faith (CDF) of the Roman Catholic Church responded to a question on the moral obligation to care for patients in a vegetative state, as put to them by the U.S. Conference of Bishops: “Is the administration of food and water (whether by natural or artificial means) to a patient in a ‘vegetative state’ morally obligatory except when they cannot be assimilated by the patient’s body or cannot be administered to the patient without causing significant physical discomfort?”24 The CDF replied: Yes. The administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life. It is therefore obligatory to the extent to which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient. In this way suffering and death by starvation and dehydration are prevented.25 The key phrase in this response is that artificial means should “accomplish its proper finality, which is the hydration and nourishment of the patient.” The phrase “proper finality” has its origin in John Paul II’s address to the International Congress of Life-Sustaining Treatments and Vegetative State in 2004. The pontiff stated: I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its

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use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering.26 Note that artificial means (such as feeding tubes) are called natural means because they deliver food and water, which we need by nature. In chapter 4, I claimed that the life-at-all-cost mentality originates in physiological medicine and not in Christian belief per se, a claim supported by Veatch and by Callahan. But the subtle power of medical technology has moved into the deliberations of the Catholic Church, such that what is a medical intervention is now thought natural to life. The technological becomes natural to human life, if we mean by life the mechanical functioning of the machine of the body. Oddly enough, the Church, which teaches that the proper finality for humankind is its spiritual end,27 seems now to be saying that the proper finality of food and water is the hydration and nourishment of physiological sustenance, whether or not it is ordered to humankind’s spiritual end. If we were unable to feed a person in PVS through artificial tubes placed directly into his small intestine, but could feed him intravenously, it seems that the Church would also proclaim this means a natural means. Moreover, the same sort of statement could be made about the ventilator. The ventilator is an artificial means of delivering oxygen and removing carbon dioxide and could be considered a natural means because it is ordered to oxygen’s proper finality; the delivery of oxygen and removal of carbon dioxide are as necessary for physiological sustenance as fluid and nutrition. Yet Pius XII, when asked questions about the prolongation of life with modern technology, stated that life itself is “subordinated to spiritual ends,”28 a position also supported by John Paul II.29 Life — physiological life — is a relative good and not an ultimate good. In fact, Pius XII specifically stated that a ventilator can be considered an extraordinary means. While oxygenation can be an ordinary measure, it can be considered extraordinary if not ordered to the spiritual end; “normally one is held to use only ordinary means — according to persons, places, times, and culture — that is to say, means that do not involve any

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grave burden for oneself or another.”30 The entirety of a human action, as described in chapter 4, must be considered in order to assess its morality. The use of a ventilator as a technological means of maintaining life can be considered extraordinary if it proves burdensome to the patient, as Pius’s statement clearly implies. Thus, means are judged for their proportionality to their ends. Kevin Wildes offers a detailed explanation of the tradition and history of what counts as ordinary and extraordinary means — proportionate and disproportionate means, respectively — especially in cases where hope of living without the burden of technology is not possible. If physiological life is not ordered to humankind’s spiritual end, then the means of sustaining life is not required. If the means is judged to be overly burdensome to the patient, even if it might prolong life, it is not required. If the means does not promote the spiritual end, then the means is disproportionate and not required of the faithful, even while it might be permitted.31 Wildes also observes that quality-of-life judgments have been central to decisions to forgo treatment in traditional Catholic teaching on ordinary and extraordinary means, from its earliest full articulation by Juan de Lugo in the fifteenth century to its application for conserving life by Daniel Cronin in 1958. As Wildes points out, however, several statements articulated by conferences of U.S. bishops in the early 1990s have used “quality of life” arguments as foils for the Roman Catholic position.32 Here, the bishops construed medical knowledge and moral teaching as objectively grounded and opposed them to “quality of life” arguments, which, they claim, lead to subjective judgments lacking in appropriate respect for life. Wildes argues that from the beginning, the distinction between ordinary and extraordinary means has included and accepted the assessment of quality of life. Moreover, Wildes also claims that the Church sometimes takes quality-of-life judgments to be opposed to its pro-life position. But just because those with a political bias against Christian views on moral issues often rely on “quality of life” language, he argues, this does not mean that quality of life language is unimportant in Catholic moral deliberation: “If we fail to understand the importance of quality of life judgments, we run the risk of misunderstanding that distinction and the important moral commitments it implies — all in the interest of winning a political battle.”33

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It is clear that the political battle to which Wildes refers is a battle against euthanasia, or physician-assisted suicide, or physician-assisted death. John Paul II explicitly links the withholding of fluids and nutrition to patients in PVS to euthanasia.34 The Texas bishops’ statement of 1990 on artificial nutrition and hydration for patients in PVS upheld the traditional teaching on proportionate and disproportionate means, namely, that artificial means of delivering food and water are extraordinary and may be removed. The Oregon and Washington bishops’ statement of 1991 was more restrictive and was developed specifically in response to the efforts of the Oregon Hemlock Society to legalize euthanasia in 1990. The bishops of Oregon and Washington tended to favor pursuing technological means of delivering nutrition and hydration.35 By the time of the statement of the Pennsylvania bishops in 1992, however, Jack Kevorkian —“Dr. Death”— had received worldwide media attention for killing patients who had made decisions to die at his hand. The more restrictive position taken by the Pennsylvania bishops in 1992 reads essentially like the 2007 statement of the CDF, mentioned above. The Pennsylvania bishops hold that the use of tubes inserted through the nose and into the stomach, or those inserted directly through the skin of the abdomen and into the stomach and duodenum, and presumably those that feed directly into the veins of the patient, cannot be a burden, because patients without a functioning neocortex or higher brain cannot experience burdens.36 It is true that patients with PVS cannot experience the pain or suffering that might be associated with the technological means of supplying food and fluids, and it is true that by sustaining their lives one is not forcing a burdensome existence upon them. However, it is also true that the brain centers required for perception of pain and suffering are the very brain centers that are required for the conscious worship of God, or the ability to respond to God’s grace and to a family’s loving care. That is to say, if they cannot experience suffering, they also cannot experience or achieve their spiritual end in this life. In a way, then, even in the Catholic Church, bare life has become more fully politicized in that it becomes the fulcrum for leverage against other morally questionable actions, such as euthanasia and abortion. Indeed, once the bare-life-at-all-costs mentality moves from physiological medicine into the Church, technological means are naturalized, in

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part because the Church has subtly shifted its metaphysics to the metaphysics of efficient causation and thus subordinated final causation to mechanism. The Church’s historic tradition of distinguishing between killing and allowing to die, and its historic tradition of distinguishing between ordinary and extraordinary — that is, proportionate and disproportionate — means is sacrificed for political ends. These historic teachings depend on traditionally held understandings of causation and on a proportional analysis of the various elements of causation ordered toward the proper finality of humankind’s spiritual end. Instead, it appears that the Church has abandoned its theological anthropology for the political ontology of the dominant secularity. In Christian theology, zoe¯, bare life, belongs to the sphere of oikos, the home, where life has its origins in the union of man and woman animated by love and divine mystery. Thus, the members of the home must judge the means to achieve proximate ends, which are further ordered to the spiritual ends. Those judgments necessarily entail deciding whether the spiritual ends can be met in this life, as well as assessing the burden that those means might have on the rest of the oikos. On the social liberal side, when one can no longer will one’s self to become what one will through medical instrumentation, one is already dead. On the social conservative side, bare life — the power of being alive itself — achieves its own immanent mechanical end, its proper chemical finality, and one cannot be allowed to die. The Catholic Church, with its recent teaching on artificial nutrition and hydration, naturalizes artifice in a way that it has not done in the past, precisely because it has joined medicine’s metaphysics of efficient causation to the immanent end of bare life. In so doing, it seems to have accepted no spiritual ends as “proper finality.” Insofar as the official Church teaching has claimed that technological means are natural means to achieve the proper finality of food and water, bare life has become an idol, worshipped for its own sake rather than ordered to its proper finality, its spiritual end. Where bare life had belonged to the sphere of the home, where love both constituted and provided for material life, it has now become the leverage point on which the battles of liberalism are carried out. The fight is about the politics of life itself;37 it is about biopolitics. In the absence of its theological moorings, the Church cannot but participate in secular power politics.

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Oi k Os a n D  PO l i s

Zoe¯ once belonged to the domain of the home; bios politikos belonged to the domain of the polis. Some will claim that even the home is political through and through, in that the will of the heads of families, their interests, and their modes of power are central to the ordering of family. Moreover, the state seems to be what sanctions a family as a family, especially with regard to tax law and the ways that consent laws are written. It is not by virtue of being a spouse or a parent that one gains the power to decide on behalf of one’s spouse or child, but by virtue of the fact that the state has enumerated those who have the power to decide as proxies. On this line of thinking, even the love of parents for children is a strategy of power, requiring the state to govern it. The state conceives of families as individuals whose interests it must arbitrate.38 We are doomed to the problem not only of the will of the one against the many, but of each individual with a set of interests that must be balanced against all other individuals with their sets of interests. The situation is as John Milbank describes it: the single universal is not life or liberty but warfare (of one against another); political alliances (social contracts) are created and the greater power of the state arbitrates by wielding its greater power against those who deviate from the dominant forms of power.39 We have moved from a metaphysics of Being, where Being and beings were the dominant themes in metaphysics (or ontotheology, as Heidegger calls it), to a metaphysics of power and a competition between the will of the many and the will of the one. Michel Foucault coined the term “biopolitics” in 1974 at a conference on social medicine to demonstrate the way in which medicine participates in the governance of bodies. He continued his thinking on biopolitics in lectures delivered a few years later at the Collège de France.40 In the lectures, as well as in other writings,41 Foucault articulates a notion of power inconsistent with that of his earlier works (History of Madness and Birth of the Clinic), where power is primarily a restraining and oppressing force. As discussed in chapter 1, his later use of the notion of power in biopolitics takes on the character of sustenance offered by the polis through structures that enable populations to achieve new freedoms and vitalities, in short, to achieve the good life.42 Through a medicine linked to and governed by the state, the po-

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litical apparatus comes to wield power over life, but now it is an enabling power rather than a merely repressive power. It creates the conditions for new capacities, which then can be chosen by the autonomous self. Thus, for example, therapy to treat the human body and enhancement of the physical body are conflated, because nature and artifice are conflated. All that is left is to decide who can shape the material, that is, who is the sovereign of the body. Power operates for Foucault in the way that Being operates for Heidegger. Power is both restrictive and productive. We find that the self either accepts or resists the power structures into which he is thrown, and it is this self-creating that defines freedom and ethics for Foucault.43 In liberalism, the sovereign decision defines genuine subjectivity, and in accepting or rejecting the power regimes of truth, one becomes the sovereign over one’s own subject. Thus, despite his best efforts, even Foucault succumbs to the oxymoron at the heart of the myth of Western politics, the notion of a “sovereign subject”— that which is both subject and object of politics. Foucault attempts to get out of this predicament by allowing for aesthetical and ethical self-creation, placing the sovereign subject’s choice at the heart of the issue.44 For this reason Beatrice Han claims that Foucault is caught between the historical and the transcendental.45 We are all, in a sense, constituted by those relationships and historical and political circumstances that come to shape us, and we are left only with a sovereign decision — to acquiesce or to transgress. Foucault, according to Giorgio Agamben, never takes up the question of the origin of the repressive and the productive powers; or, to put the question differently, how is the modern state capable, on the one hand, of both protecting life, creating new possibilities, and new vitalities, and, on the other, of authorizing the camp — Guantánamo, or Auschwitz — where bare life is possible but no hope of the good life?46 Both Foucault and Agamben47 understand that in modernity, zoe¯, or bare life, becomes inscribed within the bios politikos. Both are aware of the distinction made in Greek thought between zoe¯ and bios, where bios is always a qualified life — bios theoretikos (contemplative life), bios apolaustikos (life of pleasure), and bios politikos (political life). Bios is always the qualified life, added onto zoe¯. Zoe¯ is bare life, the life we have merely by virtue of being alive. Bios politikos is the good life available

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only within the polis, within the city. In classical politics, zoe¯ belongs to the realm of oikos, or home, and not the realm of the polis, or city. Zoe¯, or bare life, or “sacred life,” could not have been understood by the Greeks as zoe¯ politike.48 This distinction is difficult for us moderns to sustain or understand. We, and indeed the Enlightenment thinkers, have focused on the political rights that we have by virtue of bare life, by virtue of merely being alive. The sphere of the polis reaches into the sphere of oikos. Thus, life for us becomes inscribed within the political. Agamben draws our attention to a more primordial distinction than zoe¯/bios, and that is the distinction between inclusion and exclusion. In analyzing the aporia of Western politics, he focuses on the exclusion/inclusion distinction, which he calls the “state of exception.”49 To exclude, by definition, means there is a line that separates those included and excluded. But the inverse is also true: to include means that a new outside, a new exclusion is created. The line that separates the outside from the inside also joins the outside to the inside. The line that both divides and links life and liberty is perhaps clearest in the work of Thomas Hobbes, and demonstrates the way that sovereign decision relates to constituted power. In Hobbes’ Leviathan, the power under discussion is the power of life and death. In the state of nature, violence and nature are equated; we humans can be and often are unceremoniously killed. In the state of nature, “the life of man” is “solitary, poore, nasty, brutish, and short.”50 The sovereign normally precludes the indiscriminate taking of life by retaining for himself a prerogative from the state of nature, namely, the power to kill. The requirement for protection under the contract with the monarch is that humans surrender their lives, their bare lives, to the monarch as the condition for the possibility of the good life within the polis.51 The power is concentrated in the hands of one person, who constitutes, or carves out of nature, the possibility of law and the polis and thus of bios politikos, or the political life, or the good life. Still, in Hobbes there is no sense that the individual has the choice whether to contract with the monarch. Neither the state of nature nor the choice for law and polis are made by the individual. Instead, the monarch, as sovereign, in excepting himself from the law — the law that precludes the taking of life — creates the conditions for the possibility of the law. The state of excep-

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tion is preserved for the sovereign, who still lives in the state of nature, and who thus retains the power to kill without being subject to the law. Agamben points out, rightly, I think, that there is a sense in which violence and law are one and the same, distinguished by an absolutely thin line — the state of exception — drawn by the very person of the sovereign. The sovereign embodies in himself both the law and its exception. The state of nature necessarily survives in the person of the monarch who has the power to kill. The state of nature is therefore not external to the state of law, for both are preserved in the sovereign.52 As Agamben points out, however, it is not the free renunciation of one’s life and free will to the monarch, but the power of life and death in the person of the monarch that creates the conditions of possibility for one to have limited freedoms within the polis to achieve the good life. This power of the sovereign is the constituting power to create the constituted law. And when a subject is abandoned from the constituted law, the person abandoned becomes set apart and is placed in the state of nature, where he can be allowed to die or be killed. We moderns tend to cast our lot with John Locke. The Lockean social contract holds between each individual and every other individual,53 but this does not mean that the state of exception, the state of sovereign decision, is not already implicit in it. In Locke, there is more of the sense of trust between individuals than in Hobbes because humankind in the natural state, for Locke, is good. Thus, it is the agreement between individuals that creates the polis and receives the emphasis. Locke makes each individual his own sovereign. In a way, then, the law itself becomes the sovereign, but that sovereignty is quickly delegated to the individual. Individual rights are dependent on a contract between individuals. Rights derive from that agreement. Thus, the battle between social liberals, with their emphasis on positive rights (as in John Rawls), and social conservatives, with their emphasis on negative rights (as in Robert Nozick), originates in Locke.54 Both groups are interested in the constituted power but forget the violence of constituting power. Hobbes places greatest emphasis on the violence of constituting power — the power to kill, which is retained by the sovereign. PostLockean political philosophy places greatest emphasis on the constituted

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power — the power of the constituted law. Moreover, in Locke, the sovereign herself also changes, from the one with constituting power to create the conditions for the possibility of the good life, to the law itself as already constituted in the rights of all humans to bare life. But the constituted power hides the violence of constituting power. Or, to put it in Foucauldian terms, power is diffused along lines that make up the relationships of one individual to another individual (for whom positive rights of one individual can be claimed against the bodies of another), of power structures to the individual (who can be restrained if she opposes the general will of the body politic), and of a constituted individual to herself (for whom her body becomes limiting to the appetites of her individual will).55 The myth of our culture proclaims autonomy and the individual as sovereign, all the while hiding the fact that we are constituted not as sovereign subjects but as subjects of the social and political power structures that shape our lives. Our cultural and communal myth, the story we tell ourselves about ourselves, is the myth of the individual. If we are to believe Foucault, power is not constituted by the individual, but the individual is constituted by the power of the polis.56 The Kantian a priori forms of intuition — space and time — and the free-floating subject become, for Foucault and Agamben, the a priori of historical time and political space, where the freedom of the subject — indeed, the biological life of the subject — is always in question under modern politics. With respect to medicine, Foucault tells the story as follows: the state began to restrain and repress the urges of the uncontrolled psyche and body through medicine.57 However, his analysis moves very quickly away from the notion of juridical power to that of capillary power, or from restraining power to a more subtle form of enabling power. This move to the sustenance provided by medicine as central to promotion of health can be found in his writings as early as Birth of the Clinic, where it falls to medicine to promote ways of life for “their benefit to the state.”58 In the modern state, medicine participates in the creation of new freedoms and vitalities, new ways of thriving biologically; but it also is complicit, by constitution, in the violences of the modern state. In this sense, sovereign power can place the subject outside the law, where normal prohibitions are suspended. Agamben states that the most notorious place where life, bare life, was fully politicized was the camps

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of Nazi Germany, where lebensunwertes Leben, life unworthy of life, was completely politically inscribed and could be used for whatever purpose deemed appropriate by the German polis. It is with modern biopolitics that the violence of constituting power becomes hidden beneath the language that conflates bare life and the good life. I am claiming that the uses of sovereign power conflate bare life and the good life in the language of sovereign decision, as articulated by Truog and Miller, and even Emanuel and Veatch.59 In short, rather than finding a sovereign who efficiently controls life, we find the modern state bent on the control of the life of the body politic, enabling its members to take their own lives through the social apparatus of biopolitical medicine and assuring them that it is rational to do so, or to do so for the sake of giving the gift of life. The impetus of our social contractarian heritage was to define the field of rights, those aspects of life we possess simply by virtue of living, by virtue of mere human life. However, that bare life itself became a possession. The polis subjects the individual sovereign, who internalizes the contradiction at the heart of our inherited social contract, simply by politicizing bare life in this way. Bare life becomes indistinguishable from boundaries articulated by the polis in law. Bare life comes to center around a decision about death. Agamben states: The novelty of modern biopolitics lies in the fact that the biological given is as such immediately political, and the political is as such immediately the biological given. . . . The life that, with the declarations of rights, became the ground of sovereignty now becomes the subject-object of state politics (which therefore appears more and more in the form of “police”). But only a state essentially founded on the very life of the nation could identify its own principal vocation as the formation and care of the “body of the people.”60 The dream of modern politics was to define the rights of all, which are possessed by virtue of bare life — those rights to life that are granted by the constituted power. What we have forgotten is that the inherent violence of the constituting power of decision remains latent in the constituted power and rears its ugly head in the totalizing ideological regimes of modernity.

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Terri Schiavo and Eluana Englaro could be unceremoniously allowed to die or, if we accept Truog’s view, could be justifiably killed, because they are set apart from the protections normally afforded to those living in the polis. As Foucault states, “For millennia, man remained what he was for Aristotle: a living animal with the additional capacity for a political existence; modern man is an animal whose politics place his existence as a living being in question,”61 a question open to decision and choice by a sovereign. On the one hand, by virtue of bare life, one deserves the protections of liberty; on the other, by virtue of political life — liberty, the freedom of choice — one deserves the protections of life. In the absence of life, one can be abandoned from the protections of liberty; in the absence of liberty — the absence of choice — one can be abandoned from the protections of life. In our history, it was not so long ago that death was defined within communal boundaries and with communal practices.62 The shift toward death as something occurring in the body and then in the brain took years to manifest itself in actual clinical practices and was at least precipitated by, if not wholly made possible by, the rise of organ transplantation.63 That shift proclaimed — against all communal sensitivity— that what appears to be alive is really dead. It begets the incompatibilities, absurdities, paradoxes, and aporias of our practices concerning the dying. The choice to move death back into the community, where community is now understood to be the polis constituted as liberalism, places life and death back into the hands of the sovereign, who is his own subject to be abandoned from the protections of the laws. The problem is that the decision cannot be made at the level of oikos, or family, because the sphere of the polis increasingly reaches into the home: all questions about zoe¯ become questions about bios politikos. As I noted in the previous chapter, the laws governing physicianassisted death are written to frame the decision in such a way that the most rational choice is the choice for death. The laws grant the illusion that the choice is a sovereign decision. Something similar is at work in the case of Teri Schiavo. The power of the polis reaches into the sphere of oikos, or home. We have lived so long within modern biopolitics that we can no longer conceive of oikos as anything but political. We no longer have the resources necessary to understand how to make deci-

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sions within the sphere of oikos. Michael Schiavo petitioned the Florida courts to take over the decision making, rather than keeping it within the home. Why? A speculative and judgmental answer is that he and his home lacked the resources to make that kind of decision. Thus he appealed to the state. The Schindlers also could only appeal (tragically and pathetically) to court after court, because they too did not have the resources of oikos. On a more robust notion of oikonomia (decisions of home), perhaps Michael Schiavo, possibly informed by Terri Schiavo’s notions about the good life, would have come to exactly the same decision, but without the appeal to the crass power of the state. Perhaps Michael Schiavo and the Schindlers would have come to a mutually agreeable decision without the ugly spectacle. The problem is the immediate appeal to the state, which cannot treat life in any other terms than bios politikos. The very idea that Michael Schiavo would, or had to, abandon the decision to the polis by virtue of petitioning the guardianship court of Florida, the very idea that there is a guardianship court, precludes alternative ways of thinking about zoe¯, except in terms of bios politikos or zoe¯ politike. The resources of oikos are already lost to us, for the polis reaches right down to bare life.

t ra g i c  c o n cl u s i on s

Several physician-researchers have argued that those in PVS could be used for experimentation.64 The flurry of letters and response articles prompted by this suggestion focused not on the status of the person in PVS but on the kinds of consent mechanisms and legal apparatuses that must be in place to allow such experimentation, or what kind of safety precautions must be taken to ensure that the proper authority, the proper sovereign, makes the decision.65 Once Terri Schiavo and Eluana Englaro have been set outside the normal protections of the law, there is no logic to prevent us from experimenting on them or from harvesting their organs. They can be set outside the law for the good of the body politic, and it is only logical to proceed on this basis. Once they are outside the law, there is no logic to prevent us from allowing them to die, or killing them, or treating them as material for experimentation. There is

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no logic that will prevent the creation of new euphemisms about how best society — to give the gift of life to the body politic — can use those living bodies. With cases such as those of Schiavo and Englaro, the politicization of bare life is clearest. On the one hand, the social conservatives and the Church wished to keep them alive because they had bare life; on the other, the social liberals wished to allow them to die because they could not have the good life. For both sides, bare life and the good life are conflated. And the possible actions — whether keeping Schiavo and Englaro alive, allowing them to die, killing them, allowing them to become material for medical experimentation, or harvesting their organs — will occur, not because we were not vigilant, but because inherent in drawing a line between bare life and the good life is the creation of the political space that is a no-man’s-land, where a person is neither dead nor alive, and also both dead and alive; we only await a sovereign decision. What, then, are we to do? The entire process of deciding about Schiavo or Englaro — and the power of making such decisions, as constituted by law and social norms — elides the violence of constituting power, of inclusion and exclusion, of naming something as part of the norm or part of the exception. Through an appeal to the law, both the right and the left seem to believe they have brought the protections of the law into effect. Through an appeal to the constituted power of the law, what rears its ugly face is the violence of constituting power, of the sovereign decision of life and death. Alasdair MacIntyre has pointed out that on modern understandings of moral choices, we have lost the category of moral tragedy. PostEnlightenment Western thinking has attempted to categorize true or objective accounts of the ethical landscape. For post-Kantians, that means that once we have a universal imperative, the morally correct course of action becomes clear; “ought” implies “can” and “should.”66 Or, in a broadly utilitarian society, once we have a utilitarian calculus, we have a “science of morals” with a correct answer at the end of the equation. In such modern versions of morality and politics, there is but one correct answer, and all others are wrong. Both social conservatives and social liberals, by inscribing the lives of those without sovereignty completely within the law, do not have to mourn the contingency of their decision or acknowledge the tragedy of deciding at all. One is either

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included in the polis (and permitted the protections afforded by the law) or excluded from the protections of the polis. Our claims about what constitutes personhood or consciousness or brain death are post hoc justifications of the paradox at the heart of Western politics. The logic of social conservatives goes something like this. “We protected Terri Schiavo’s bare life! We have done a good thing!” Once bare life is politicized and totally inscribed within the law, we do not have to mourn the fact that Terri Schiavo has only a bare life, and that the life of oikos that she and Michael Schiavo envisioned for themselves is not possible. She is kept alive with tubes and machines without the hope of ever achieving what she had hoped for her life. We do not have to mourn the fact that the accoutrements necessary to sustain her bare life are constant reminders of what has been lost, namely, the life that could have been. She has bare life, and we have protected her rights. We have done the good thing here. The decision does not permit the acknowledgment of what is lost in a decision of life and death. The decision to afford her the protections of the polis leads to the tragic conclusion of Terri Schiavo being kept alive, in a state of bare life on the machines of life. The same logic holds for social liberals. Once we have abandoned Schiavo from the protections of the law, we can allow her to die, or indeed kill her, for the two have become the same under the metaphysics of efficient causation. We do not have to mourn the love the Schindlers have for their daughter, as demonstrated in their vigilant care. We do not have to mourn the fact that the good of caring for a family member through adversity — a good way of being family, a good of oikos — is no longer possible. We did the legally correct, ethically good thing. We maintained her sovereignty, by proxy. A good has taken place; now the survivors can all rest. The decision to exclude Schiavo and Englaro from the normal protections of the polis leads to the tragic conclusion that they can be allowed to die, without regard to what is lost, because what is lost cannot be valued in biopolitics. This logic results in other kinds of tragedy; for if they can be allowed to die by virtue of the power of the polis, they can have their organs procured for the benefit of the polis, or experimentation done upon their bodies for the good of society. The political claims made by medicine, by those who would promote the good of

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the polis against the bodies of those with bare life, will lead to framing the questions in such a way that the good of the polis becomes unassailable. Who can be against progress? The life of the living bodies within the body politic will be promoted by advancing the death of those without the good life, thus promoting the death of those who are dying. The polis is directed against oikos; bios politikos is directed against zoe¯. Liberalism reaches beyond the polis and into the oikos, where Truog and others who emphasize choice wish to locate the decision about how to dispose of the bodies of those who can, through a decision, be abandoned from the protections of the law. Thus, in the spectacles surrounding Schiavo and Englaro we see the political contest at the heart of liberalism, playing itself out over the bodies of those who have lost their sovereignty. They had become set apart, sacred to liberalism and the biopolitics that manages the life of the body politic. They have become ritually abandoned to the myth of the individual who is his or her own sovereign. Social liberals need such spectacles in order to reinforce their position that life is decision; social conservatives need them to affirm the political rights of bare life, it seems because they secretly suspect that nothing transcends the immanent life of mechanical physiological functioning. Those who carry the diagnosis of PVS illustrate the fluid boundaries of life and death. Their lives and deaths illustrate for us the violence of sovereign decision, the violence of constituting power, latent in constituted power. Their lives and deaths illustrate for us that life has become indistinguishable from decision and that we live within a biopolitics. Their lives and deaths illustrate that our beliefs in brain death and our beliefs in notions of personhood are little more than post hoc justifications for decisions that were already taken by the biopolitics of contemporary liberalism and its creation, modern medicine, which is built upon a metaphysics of sovereign decision. The sovereign decision maker is he who has the power to effect change, to cause death; in short, this biopolitics is grounded in a metaphysics of efficiency.

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Transition Two

In this book I have taken as my starting point Michel Foucault’s thesis that at the heart of medicine is a dead body. This dead body begins as an epistemological ground for medicine, but it also has metaphysical import. Time is frozen in the space of this body. Never mind that, in reality, the body begins to decay after death, or rather, it begins to decay to some degree even while the dying person is alive. The static dead body became for medicine an ideal-type, a representation that could be mapped onto living bodies; all movement in the living body is seen through this lens. Whereas Foucault only hints at further developments of this idea, I have argued, further, that Aristotle’s metaphysics of causation was abandoned in medicine, or rather was modified, in that formal and final causes were deemphasized and efficient and material causes were elevated. The body, like the rest of the world, became mere matter operating according to efficient causation: function, not purpose, became the unifying moment of analysis. The nineteenth-century physiologists believed that they were studying life because they were studying animation, whereas the anatomists were merely studying the dead body. However, the physiologists themselves caused death in order to understand life. Thus, we find Bichat asserting that “[l]ife consists in the sum of the functions by which death is resisted,” death being the more mechanically likely condition and •    223

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life being an accident of motion. Bernard could claim, as he opened up the living animal — whose blood and cries must be ignored for the sake of understanding life — that he had peered deeply and penetrated profoundly into animal life. At the core of that life, Bernard — that Newton of physiology — found that there was no real difference between life or death in physiology. Physiology, then is about dead matter, or, equivalently, about purposeless matter in motion. Life is nonliving matter forced to move until it becomes, again, inert, nonliving matter. The impetus for movement is the brute force of the prior cause. For the scientific mindset of the physiologists, life must lose its purpose and its meaning so that its truth can be known. The result is the violence perpetrated on the living bodies of animals that must be caused to die and the violence of the prior cause forcing an effect into being; these are central features in the constitution of medical knowledge. Bichat finds that in destroying function — in the death of the heart, or brain, or lungs — we can reconstruct what we mean by life, given that life is the sum of all functions resisting death. Intervene with death and destruction, and we can see how life behaves materially and efficiently. Bernard can claim that, in physiology, life and death have no meaning. The values of the laboratory translate directly into the clinic, where life is still understood as the motion of dead matter, which is playing itself out toward a terminus, a final resting position. And the norm of matter in motion produces life in the ICU. Living cadavers and heart-lung preparations thrive in the ICU. The mechanical function of a failing body is replaceable by the mechanical function of machine or by the mechanical function of living organs taken from the dead. Beginning in the 1950s, physiologists and doctors began to be able to keep patients alive on machines. The animal machine could be forced to stay alive through the machines of technology. Physiological life, because it had no purpose, became its own good, ordered to nothing else. A life with function in the ICU but without purpose, however, can only be sustained for so long before that life becomes intolerable, indeed, worse than death. Rather than urging patients to revolt and to demand that medicine think about final causes and purposes of human living, liberalism proclaimed — in response to the coldness of life and death in the ICU — that the patient was her own sovereign over a mechanical medicine.

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tr a n s i t i o n   tw o

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Sovereign decision became the efficient cause of stopping or starting the technologies of medicine. For the dying, since death is the final effect of refusing technology, it makes sense that a sovereign decision for death would require a doctor’s assistance in causing that death. After all, decision is the prior cause in both refusing technology and committing suicide. The doctor thus becomes an intermediate efficient cause; the doctor herself lacks a purpose other than to bring desired effects into being. As part of the drive to maintain physiological function, the dead, through their organs, became the source of life for others. Yet before living organs can become the source of life, the donor, who is also the patient, would have to be dead. Thus, a new debate is born. Does the person/soul cause life? Does the neocortex cause the person? These problems can be solved only through the assertion of decision as central and essential to human being. And this leads to the spectacle of biopolitics in the political machinations surrounding the lives of those in PVS. Authors such as Emanuel, Miller, and Truog recognize — more clearly than the 1981 President’s Commission or the subsequent Council on Bioethics — that rather than fighting about metaphysical notions of life and death, or about the location of the soul or person, or about what counts as living or dead, we must return to the first principle of liberalism, where sovereign decision asserts itself in proclaiming new norms for living and dying. The sovereign, who of old could place those with bare life outside the protections of the city, can now be set outside the city; or rather, a body with bare life can be set outside the city, once she can no longer be her own sovereign. What Emanuel, Miller, and Truog fail to see — indeed, cannot see since zoe¯/bios and oikos/polis for them are one and the same — is that the crass power of the polis is not an answer to a medicine informed by a metaphysics of efficient causation. What they do see, especially Miller and Truog, is that bare life, mere life, can be put to good use for the good of the polis. The life of the living polis must be promoted in all ways, even in the promotion of the death of the dying. The physics of medicine, or rather, physiology, won the day in the mid-nineteenth century and shaped medicine for decades to come, running its course, revealing its absurdities, and deploying its violences in the care of the dying. As a result of the successes of this kind of medical

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science, the science of mécanique sociale, namely, the medicine of the numerical method (the médicine d’observation), was marginalized. Yet it did not completely disappear. It found its way into sociology and psychology as well as public health. It appeared occasionally in medicine proper by demonstrating, among other things, that bleeding was not efficacious in treating people and that sterile technique resulted in fewer infections. What the numerical method lacked in discerning robust causation, it made up for in finding correlation and broad applicability. Still, because the numerical method had been marginalized, the true fruits of the human sciences went without recognition by mechanical medicine until the mid-1970s. The sciences of sociology and psychology were the inheritors of the numerical method. By the mid-twentieth century, their fruits were readily visible, and these sciences could be viewed as a potent corrective to a medicine bent on biological functionalism. The two modes of science, loosely held together in the medical school, began to influence one another. Foucault’s insight was that different strands of history can come together in the same political space to produce new practices, new modes of being, and new modes of living and dying. Physiological/ technological medicine would become allied with the sciences of psychology and sociology, with their very different methods, modes of assessment, and kinds of intervention.

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chapter

8

The Discursive Turn

Practitioners of medicine and psychiatry began to notice the crassness of functional biological/physiological medicine in the late 1960s and early 1970s. With the appearance in 1963 of such works as Jessica Mitford’s The American Way of Death, on the funeral industry,1 American society began to think more about death. Just as the funeral industry hides death from public view, so has medicine. Elisabeth Kübler-Ross’s 1969 book On Death and Dying demonstrated just how far medicine had contributed to this hiding of death.2 Medicine could not speak of death. Doctors would not mention the word, for fear that the psychological blow to patients would be detrimental to their physical ability to fight their disease; or perhaps, in a spirit of technological optimism, doctors were unwilling to admit to patients that they could not maintain their biological function indefinitely. A loss of hope in the technological is inconsistent with the life-at-allcosts mentality that had animated medicine into the 1970s and still drives it. In a way, due to a number of factors in American culture, death had become a taboo subject, comparable to the topic of sex in Victorian times. Death also became a major industry: medicine rose to the challenge of keeping people alive, just as the funeral industry rose to the challenge of making the dead look as if they were alive — merely sleeping. Moreover, after the publication of Kübler-Ross’s book, a cottage •    227

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industry of thanatology was born. Thus, on the one hand, death was hidden away and became that about which one could not speak, and, on the other hand, death became the very thing about which we must speak, according to the thanatologists.3 Several other books on death and medicine or death and psychology were influential in the late 1960s and early 1970s, including Avery Weisman’s On Dying and Denying, Ernest Becker’s The Denial of Death, and the volume Death and the College Student.4 There had also been attempts to treat death through social-scientific methods before KüblerRoss’s ground-breaking study.5 In 1968, for example, Avery Weisman and Robert Kastenbaum had published The Psychological Autopsy, in which they reported the findings of in-depth interviews of eighty elderly patients in the “pre-terminal phase.”6 Their intent was to bring together the medical, the social, and the psychological. They assumed that, as with the body in an anatomical autopsy, the psyche could be examined in the preterminal phase as a means of capturing the truth about death and dying, as well as about living. The attempt to master death through medical technological control had failed; but our attempts to control the uncertainty of dying were only beginning, now through ideas other than that of sovereign choice. If death cannot be mastered through the use of technology, perhaps it can be mastered psychologically and sociologically through expert discourses of psychologists and social scientists. This attempt at discursive mastery, however, is not separable from other trends in medicine. Medicine must turn away from mere biology and look at the psychological and sociological factors and at the spiritual dimension of living and dying. Thus, we see the deployment of the statistical sciences — particularly in psychology and social work — and the expansion of techniques of assessment to capture every dimension of human thriving. A biopsychosociospiritual medicine is born — a medicine that addresses all features of human thriving. It sets out to nominally define, to operationally assess, and to statistically measure the wholeness of human living; it is a medicine devoted to holistic care, or perhaps better, a medicine devoted to total care. Biopsychosociospiritual medicine measures all things and is the measure of all things. Before I turn to the analysis of palliative care — the care of the dying — I will explore the political terrain of a biopsychosociospiritual medicine.

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cri si s  a n D a D ju st m e n t  i n  meDic in e

In his now classic The Order of Things, Foucault makes a broad-stroke claim, as he is wont to do, that the human sciences hold dominion over “man,” and that medicine acts in a similar way.7 He notes that medicine, along with the human sciences of man, have as their domain the various activities of human thriving. In a way, then, medicine acts as the the queen of the human sciences, in that it attempts to order the various domains of human thriving by deciding which of the sciences are important to human thriving generally, as well as to that of particular patients. As I have discussed earlier, Foucault later thought of this relationship between the individual and the social in terms of a biopolitics — the “politics of life itself,” as one commentator has called it8— where the body and psyche of the individual are shaped by the historical and political circumstances of the society into which he is born. In retrospect, Foucault’s work seems prophetic. Shortly after the publication of The Order of Things, we find medicine rethinking itself in George Engel’s influential 1977 essay, “The Need for a New Medical Model.”9 This essay, published about eight years after Kübler-Ross’s On Death and Dying, is an articulate crystallization of much of the spirit of the time. It would come to shape all of medicine, not merely the medical care of the dying. For these reasons, I shall begin by examining Engel’s work before turning to an analysis of On Death and Dying. In his classic redefinition of medicine, Engel argues that the current biomedical model that focuses on diseases and bodies is no longer adequate “for the scientific tasks and social responsibilities of either medicine or psychiatry.”10 Thus, there is both a scientific and a political impetus to change the model of medicine. Both psychiatry and medicine are in crisis. Psychiatry’s crisis is apparent in that psychiatrists are not certain whether “the categories of human distress” that they treat are “properly considered ‘disease.’ ”11 Medicine’s crisis, on the other hand, lies in the fact that many doctors are calling on medicine to deal with the organic diseases and “to not get lost in the psychosociological underbrush.”12 This biomedical model has resulted in a crisis, Engel argues, because it is a dogmatic biological reductionism — a biologism — resulting in the exclusion of nonphysical disorders from medicine.13 Biomedicine, Engel

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claims, fails to recognize that it is as much a cultural model, with its own historical development, as the folk cures of tribal mankind. Healing practices emerge out of social contexts where communities respond to various physical and psychological threats.14 Like other cultural models of disease and healing, Western biomedicine, too, is a social response created to deal with these threats. Thus, according to Engel, the biomedical model of medicine — a reductionistic or dualistic model — has reached its limits. The biomedical model no longer serves the needs of Western societies. According to Engel, there are a couple of possible responses to this crisis. The first comes from those, such as Thomas Szasz, who argue that mental illness is a myth15 because it does not conform to the usual pattern for defining disease as that which has definitive, observable, and therefore real lesions in the brain.16 As part of this response, only those disorders that are both classified as psychiatric disorders and have neurological correlates qualify as diseases. Under Szasz’s model, these psychiatric disorders would actually be neurological diseases and should be cared for by neurologists. On the other hand, those disorders without clear neurological correlates would be classified as “problems of living” and should be treated through reeducation by behavioral psychotherapists, whose body of knowledge would emerge from behavioral scientists. Finding Szasz unpalatable, and with the failures of the biomedical model clearly evident, Engel puts forward as the second response a model for medicine that he calls the biopsychosocial model. Engel’s important insight is that the reductionist model of disease is too narrow. It must be broadened in order to adequately capture the human experience of disease and to treat it efficiently and effectively. Engel hopes to create a kinder and gentler medicine, one that does not ignore the psychological and social components of disease.17 As Engel notes, the doctor must first decide if the patient is well or sick, and “if sick, why sick and in what ways sick,” and then define a program to treat illness or to restore or maintain health. Of essential importance is that the “boundaries between health and disease, between well and sick are far from clear and never will be clear, for they are diffused in cultural, social, and psychological considerations.”18

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Engel makes several key points to justify his proposed biopsychosocial model. These points demonstrate how comprehensive his model strives to be. First, symptoms are always filtered through cultural and social descriptions, which come to shape and give substance and meaning to the experience of disease. Second, the patient’s experience of his body derives from bodily experiences in early life, “resulting in a significant degree of ambiguity in the language patients use to report symptoms.”19 This, in turn, affects how the clinician analyzes and interprets the symptoms, and necessitates “scientifically rational approach[es] to behavioral and psychosocial data.”20 It thus necessitates robust human sciences. Third, there are higher degrees of ill health among those populations who are “exposed to incongruity between the demands of the social system in which they are living and working and the culture they bring with them.”21 Fourth, biomedical factors alone do not determine the time when a person accepts the role or status of “patient” and seeks medical attention. Fifth, psychological and social variables help to structure and determine the length of time the person remains in the role of patient, even after the biochemical abnormality is treated. Last, Engel points out that the relationship between patient and physician can “powerfully influence therapeutic outcome”;22 something mysterious happens in the communion of doctor-patient. The biopsychosocial model of medicine allows, indeed obligates, the doctor to oversee all aspects of the disease, or the complete illness experience. According to Engel, The doctor’s task is to account for the dysphoria and the dysfunction which lead individuals to seek medical help, adopt the sick role, and accept the status of patienthood. He must weight the relative contributions of social and psychological as well as biological factors implicated in the patient’s dysphoria and dysfunction as well as in his decision to accept or not accept patienthood and with it the responsibility to cooperate in his own health care.23 In short, the biopsychosocial model does not accept the mere biological factor as the “real” disease, separable from the mode of its presentation to the awareness of the patient or those around her.

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The model of biomedicine itself emerged out of the social milieu of the late modern West. Engel states: To provide a basis for understanding the determinants of disease and arriving at rational treatments and patterns of health care, a medical model must also take into account the patient, the social context in which he lives, and the complementary system devised by society to deal with the disruptive effects of illness, that is, the physician’s role and the health care system. This requires a biopsychosocial model.24 Two points of his critique come into relief. First, a myriad of phenomena might disrupt a person’s social functioning and thus might prompt him to seek medical attention. These phenomena might be as mundane as a sore back that prevents a person from working, or as disconcerting as a person’s hearing voices, which distresses him or those around him. The second point is that various social models emerge to help the person to return to normal social functioning. Biomedicine was the social model created in the West to achieve this task, but by the mid-1970s it was one that denied its social foundations and its social functions, according to Engel. For example, a person might very well have a biological disorder; yet he might not acknowledge it as an illness, but merely accept it as a problem of living. People do this all the time with chronic pain that they live with for weeks or years before deciding to see a doctor. Back pain might mean to a person that he is working too hard at his construction job and needs more rest.25 The person therefore may never seek medical attention. Thus, the biopsychosocial model provides an explanatory framework for the doctor; it helps him to understand why some people do not seek medical attention. Likewise, the biopsychosocial model provides a framework of analysis that can be applied to those who seek medical attention for problems that do not have biological explanations. To return to our example of back pain, there may be a biological cause, such as prostate cancer, or there may be a social problem, such as dissatisfaction with a job. There might even be a psychological problem, such as the recent loss of a friend

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from cancer whose presenting symptom was back pain. Or there could be a psychosomatic problem, in which a psychological trauma manifests itself in the body as back pain. Therefore, the biopsychosocial model provides a comprehensive framework for the doctor, allowing him to get to the bottom of the problem in order to find strategies to restore the person to his social functioning. In short, Engel claims that the biopsychosocial model provides a better framework than the biomedical model for explaining a myriad of phenomena that present themselves to doctors. Engel’s claims rest on the notion that medicine exists in a larger social milieu. A single individual functions within a social framework. His identity is tied to that framework, and he comes to value his own personal purposes and meanings that are congruent with the social framework, even though they may be more or less congruent with various components of the framework. Disease comes to threaten that person’s place within that social framework. Disease might deform either his appearance or his goals, and in either case, the person and the society around him experience distress.26 So, according to Engel, the biomedical model — like other folk models — is a social response to these perceived threats to function, where function is understood to be functioning within the larger social framework.27 Since medicine is a social practice emerging out of a social milieu, it therefore must take into consideration the social as well as psychological aspects of disease. Therefore, Engel advocates a more functional medicine, not merely in terms of biological function but also in terms of a myriad of social functions. He is arguing that the kind of medicine that takes disease, or even the body, as its proper object misses out on the psychology of meaningfulness in life, as well as the social context within which meaning takes shape. Central to Engel’s construal of the situation are the notions of proper social function and of proper individual function within the larger social framework. Medicine is part of the process of defining the good life and thus defining what gets in the way of that good life. So what counts as a disease or disorder is socially defined, and if medicine is to remain relevant to a social context, it must create itself in a way that includes the psychological and social dimensions of people’s lives — community, meaning, and purpose. It must extend itself beyond the biological space of disease.

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Taking grief as his example, Engel states: [T]he physician’s basic professional knowledge and skills must span the social, psychological and biological for his decisions and actions on the patient’s behalf involve all three. Is the patient suffering normal grief or melancholia? Are the fatigue and weakness of the woman who recently lost her husband conversion symptoms, psychophysiological reactions, manifestations of a somatic disorder, or a combination of these? The patient soliciting the aid of a physician must have confidence that the M.D. degree has indeed rendered that physician competent to make such differentiations.28 The new paradigm, then, serves as the tool by which medicine penetrates into the broader life of the patient. He is not merely a body; he is a body with a psyche and a body within a social framework. Under the new biopsychosocial model of medicine, the whole of human being can be engaged. Engel does not repudiate Western science; he merely opposes the reductive nature of Western medicine. Rather than arguing that science itself is reductive, Engel lays the blame at the feet of a medical science that has been infected by a Christian dualism. The purported mind/ body dualism of Christianity defines the body as a mechanism separate from the mind or soul, resulting, he argues, in a science that places too much emphasis on the physical body and too little on the psyche or on society. While it is questionable whether Engel understands the Christian theology of the body or the history of mind/body dualism, it is clear that, for him, medicine has not yet taken into account the psychological and social sciences. He regards physio-mechanical reductionism as the crucial problem, and the correct response for medicine as a psychological and social scientific emphasis, together with a functional understanding of society. On Engel’s assessment, medicine had not yet learned from the human sciences of psychology and sociology, which equally deserve the noble title of “science.” For these sciences to be utilized by the clinician, Engel argues, new forms of assessment and diagnosis will have to be developed. In a sense, then, Engels’s argument is a case for the use of the statistical sciences to capture the psychological, social, and spiritual features of human living.

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a  G r i e f D e s c r i b e D

One cannot possibly begin to estimate the extent to which Kübler-Ross’s On Death and Dying changed modern medical practice. As noted above, several works in the psychiatric and social scientific literature had addressed aspects of death and dying before the publication of her 1969 study. Weisman already had several publications naming many of the features that Kübler-Ross would report.29 Engel himself had published on grief in 1961.30 What is amazing, given its influence, is the lack of scientific rigor of Kübler-Ross’s study, even though, throughout her life, she persisted in claiming the mantle of science.31 On Death and Dying has the feel of science but not its exactitude. For instance, Kübler-Ross carefully describes the setting of her studies and her methodology — a standard practice in a science publication.32 Her laboratory was a seminar designed to capture patients’ experiences of dying and terminal disease as described in their own words. She taped the patients’ conversations, transcribed them, and revisited the transcripts with the other members of her seminar. In her patient interviews, Kübler-Ross admirably asked open-ended questions with minimal interruptions. The book reproduces several of these taped conversations in their entirety, primarily without editing. The interviews were conducted by Kübler-Ross and an unnamed chaplain, her partner in the scientific study. The first interviews were attended by four theology students, but within a few years the number of attendees peaked at more than fifty people: doctors and nurses at all levels of training, medical and nursing students, social workers, divinity students, chaplains, and psychologists. During the interviews, the seminar audience was not visible to the patient and the interviewers, who sat behind a two-way mirror. These features all gave an air of a scientific endeavor. While we may not wish to fault Kübler-Ross in general for a lack of rigor — many of the techniques that would be applied today to similar in-depth interviews had only just been articulated — a very interesting set of problems comes into relief in the book. Kübler-Ross delineates five stages that people go through when faced with their death: denial, anger, bargaining, depression, and acceptance. These famous five stages of grief, however, are not supported by the case examples that accompany the descriptions of each stage. For example, the case

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used as an instance of anger is of a nun in her forties who has had a long and protracted illness from cancer. Surprisingly, the nun does not appear to be angry at all in the interview. She seems remarkably well adjusted. In fact, the nurses and doctors who had been taking care of Sister I. were the ones who had labeled her as “angry.” Thus, the diagnosis of “anger” does not emerge out of the interviews but was a label placed on the patient by the hospital staff. Moreover, the long excerpt from Sister I.’s interview is the only case description that appears in the chapter on anger. The same is true for the chapter devoted to depression. The patient whose interview is quoted does not seem depressed. Certainly, he is sad about his circumstances and wishes that his wife would better understand what is important to him now, but based on the text of the transcript, the diagnosis of depression seems extreme. And the chapter devoted to bargaining consists of only three pages and offers no transcribed conversations as examples of a patient bargaining with God or the doctors for more time. Kübler-Ross, in short, does not show how her depiction of the five stages emerged out of the material experiences articulated by the patients themselves. In fact, it appears to me that her extended examples could all be classed as examples of people in the acceptance stage. They appear to be well-adjusted, misunderstood individuals — misunderstood by the health-care staff and/or their families. Each extended example for each stage also depicts a “success-story,” in which the patient is finally “heard” by Kübler-Ross and her colleagues. In the process of listening, Kübler-Ross and her colleagues are then in a better position to act as intermediaries between the patient and those who find the patient “difficult.” In other words, the five stages of the dying process — which are also the five stages of grief — do not emerge out of the interviews themselves but appear to have been designations placed on patients by other caregivers: doctors, nurses, social workers, or Kübler-Ross and the chaplain. There is another way to tell the story about the five stages, not as a story of patients’ experience of mortality but as a story of institutional efficiency. The five stages appear to be primarily concerned with the functioning of the hospital, especially when something gets in the way of the processes for moving a patient through the system. For instance, patients who slow down treatment plans because they doubt that they

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have the disease and thus do not rush to treatment might find the label of “denial” placed upon them. Or, if a patient recognizes that she is dying and pursues fruitless interventions, thereby wasting precious time and money, she is in “denial.” Patients who alienate the very people who care the most about them, including family and health-care personnel, become very difficult to care for. Both family and health-care personnel will often avoid these patients and may label them as being in the “anger” stage of grief. When a patient says something to the effect of “let me try this other treatment, and then I will be much happier to try the treatment that you want for me,” the patient can come across as manipulative to health-care personnel and is labeled as in the “bargaining” stage. Patients who are rightly sad about their condition, such that their gloominess sucks the energy out of health-care personnel, can be labeled as “depressed.” It is only the patients who have found acceptance who are the real gems; they offer insight not only on their own living and dying but also on the lives of health-care personnel. These patients are labeled as in the “acceptance” stage of grief. Acceptance of their disease allows for better treatment plans, and acceptance of their deaths does not result in excessive treatments. Acceptance comes to mean not only acceptance of death but a path to further psychological growth.33 KüblerRoss does not offer examples of those who will not “go gentle into that good night,” those raging “against the dying of the light.”34 In other words, the five stages are about the social functioning of the health-care institution. Kübler-Ross must show how she helps in that functioning by naming, for the benefit of the institution, a process of movement toward acceptance. I am not denying that there are patients who bargain or who are in denial about their disease. Nor am I claiming that there are no patients who have accepted their disease and their own dying. I am claiming, however, that these are categories of social functioning of the healthcare machine, which is bent on efficient control. While Kübler-Ross has many insights into the state of the care of the dying, and while she admirably attempts to avoid moralizing, it is also clear in her work that all patients should reach acceptance before their dying. There are many poignant and beautiful stories in On Death and Dying. The role of the helping professions is to assist people to the final end of acceptance, to better manage the patient, and to promote coping.35 In one essay

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in Death: The Final Stage of Growth (a collection of essays edited by Kübler-Ross), a researcher wants scientific research that will best enable chaplains and psychiatrists to determine when and where to intervene to assist the patient along the path of acceptance.36 If we know more, through more rigorous scientific research, we can better manage the patient. Kübler-Ross popularized the scientific description of psychological reactions to death and thereby gave the illusion of mastery over death. As a product of a member of the medical establishment, her work was central to the movement of medicine from the pursuit of technological mastery of death to the pursuit of psychological mastery of death — to owning death, to accepting it. She succeeded where other, more scientifically, psychiatrically, and psychologically rigorous accounts that had appeared before hers could not have succeeded. However, it is also clear that she gave the five stages of dying/grief a scientific veneer, with the result that the five stages could be heard and accepted by those who would master death technologically. Kübler-Ross offered them a different mode of control, this time through discursive practices. Of course, discursive practices must be directed at something, such as denial or anger, and there must be some goal toward which they are directed, such as acceptance. Moreover, those who utilize these discursive practices must also help define their interventions and their successes, and must define the powerful realms of their disciplines. In other words, better scientific assessments would be needed.

a  Gri e f a s s e ss e D

Kübler-Ross gave substantial credence to the idea that social scientific investigation could help medicine do a better job in caring for the dying. Engel provided a robust and broadly social scientific model for the new medicine. Both were leaders in the discursive turn in medicine, which extends medicine’s reach beyond the merely biological to all aspects of life itself. Around the time of their writings, we find an explosion of new techniques to assess scientifically everything from grief to spirituality. Today, for example, a company called Psychological Assessment Resources lists 428 different products that assess everything from parent-

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ing to cognitive function to intelligence to whether someone would be a good law enforcement officer.37 There are forty-nine different assessment tools in its Behavior/Health section. Moreover, these tools, which are for the most part psychological inventories, are only the ones sold by this particular company. There is a wealth of other such companies and assessment tools. These tools are designed to give specific knowledge about particular people as they relate statistically to large numbers of people. For my purposes, I look closely at two areas of assessment: bereavement/grief and spirituality. Since the boundary between “normal” bereavement and “pathological” bereavement is not always clear, there is a need to assess grief per se, so that empirically grounded distinctions between “normal” and “pathological” bereavement can be made.38 Usually, grief is considered a “normal” response to some loss, especially the death of a loved one but also losses such as that of a limb or the ability to walk.39 The simplicity of the assessment tool serves the two most important values of biopsychosocial medicine, namely, efficiency and effectiveness. The researchers who developed the Texas Revised Inventory of Grief, for example, note that their tool is clinical and therefore useful in practice.40 It achieves this status because it identifies “deviant grief reactions” and measures “changes over time.”41 Thus, the tool allows for numerical certainty and the graphic representation of a patient’s improvement or decline. It quantifies “past as well as present experiences”42 and thus is dynamic. The Texas Revised Inventory of Grief has four sections. The first captures demographic information so that the respondent can be placed into various categories. For example, if the respondent is Catholic, his particular answers can be compared to those of other Catholics, which serve as a social norm for all Catholics. If he is older, his particular answers can be compared to those of others in his age group. The fourth section attempts to identify factors that might have prohibited the respondent from returning to “normal” social functioning, and factors that might contribute to the fact that the grief is “pathological” or complicated. Normal grief, therefore, is defined against the background of specific groups, and it is normal insofar as the respondent has returned to normal functioning. The questions in the fourth section might indicate why the person has “complicated” as opposed to “normal” grief

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and thus indicate to therapists where and how they should intervene in the “complicated” grief reaction in order to “normalize” the grief. For example, if the grieving person did not attend the funeral of his deceased loved one, the therapist might be able to explore the reason why and arrange for him to visit the grave of the deceased as a mode of therapy. The second section deals with statements about experiences that one had at the time of the loss. The third section deals with present feelings about the loss. Given this inventory of statements, the bereaved is asked to rate them along a Likert scale as Completely True, Mostly True, True and False, Mostly False, and Completely False. A quick inspection of the statements in the inventory reveals a very generic survey of questions. The respondent to this inventory is never asked to articulate specific content as it relates to the loss of his loved one, nor to mention specific content involving ritual or the patient’s beliefs about guilt, mourning, or even grief itself. Yet as anyone can attest, the specific content of grief is of central importance to the bereaved. Moreover, the statements about present feelings are designed to distinguish between complicated and uncomplicated grief. The “normal” amount of time that should be devoted to grief is about two months, according to the Diagnostic and Statistical Manual of Mental Disorders.43 This is specifically contrary to many religious traditions, for which the ritual mourning period is one year. Statements such as “Even now it’s painful to recall memories of the person who died” and “I am preoccupied with thoughts (often think) about the person who died” are designed to distinguish between “normal” and “pathological” grief. Thus, the position of the American Psychiatric Association and the Texas Revised Inventory of Grief is that social functioning should return to “normal” within two months; in other words, the feelings of loss should not get in the way of social functioning after two months. If the grief persists beyond this time period and “thoughts” about the loved one continue to intrude upon one’s work or social life, then section four of the assessment might give the therapist an idea of where to intervene clinically. The Texas Revised Inventory of Grief, therefore, allows the clinician to efficiently assess and assist the pathologically bereaved to return to social functioning. But social functioning is itself also about efficiency. For instance, if the bereaved person suffers from complicated grief after two months, it might be because he feels guilty that he did not care for

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his deceased spouse or did not grieve properly. This complicated grief keeps him from doing his job appropriately and thus distresses him. After all, if the person cannot work because he keeps thinking about the loss of his wife, it is distressing to him and to others around him, such as his boss. Thus, the goal is to return him, as efficiently as possible, to a performance of his regular routines of life and living. The Inventory is able to do so in an efficient manner because, as a simple “paper and pencil” assessment, it is itself efficient and easy to administer. It provides a glimpse into the places where grief might have gone astray, and as such, it might even give the therapist an indication about the kinds of therapeutic interventions that will restore the grief-stricken respondent to normal and efficient functioning within society. This tool even lends itself to further research strategies.44 It thus defines the research trajectory and delimits the knowledge that will become part of the expertise of the health-care practitioner. It helps to diagnose the patient and to define both the realm of expertise and who counts as an expert.

re l i G i ou s  c op i n G  

Another mode of helping someone cope with death, dying, loss, or illness is through religion. There are many conceptual models that emphasize different aspects of the spiritual, depending on the disciplines of those who do the research, the context in which the research is carried out, and the purposes of the researchers. Peter Hill and Ralph Hood, for example, have documented 125 different measures of spirituality and religiosity.45 There are measures that focus on attitudes toward religion, concepts of God, faith development (analogous to psychological development), religious commitment, and religious coping.46 There are even secular measures for spirituality that include both existential well-being and religious well-being.47 In addition, hospital chaplains, nurses, and others concerned with the spiritual well-being of patients in medical settings have developed assessment tools for different purposes. For instance, Steven Ivy, a hospital chaplain, created a model of spiritual assessment that relies heavily on James Fowler’s Stages of Faith.48 Fowler is heavily dependent on Lawrence Kohlberg’s stages of moral development; Kohlberg, in turn, is dependent on Jean Piaget’s

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theory of cognitive development.49 Thus, at least for Ivy, spirituality is conceived along the terms of developmental psychological functioning. The unit of analysis is development, and the setting for which Ivy applies the assessment is the hospital. Another model, developed by Elisabeth McSherry,50 was touted as the means to modernize the clinical science of chaplaincy in the era of Diagnostic Related Groups (DRGs), which were created for the purpose of defining and controlling costs in health care.51 McSherry calls for a better science of chaplaincy. In other words, by showing that she is assessing her patients, the chaplain can demonstrate her value to the institution because she can show that she is improving care with an instrument that defines the patient’s problem, allowing her to intervene and to demonstrate that improvement. There are far too many forms of spiritual assessment and measures of religiosity to list or analyze here. For the sake of illustration, I shall look carefully at two assessment tools. I choose the first because its designers include leading figures in the religion and health movement. I choose the second because its creator, George Fitchett, exhibits one of the most thoughtful and nonreductionistic approaches in this area, yet still fails to escape its pitfalls. Kenneth Pargament, Harold Koenig, and Lisa Perez created an instrument they call the RCOPE. They conceptualize religion and spirituality as a coping mechanism. They operationalize this conception in the development of an inventory of questions devised as indicators of religiosity. The RCOPE is a measure “of religious coping,” and all such measures “should be grounded theoretically in a functional view of religion and the roles it plays in coping.”52 The reason for the functional view of religion is to harness it for the purposes of clinical intervention and better research. “Thinking functionally [with the RCOPE] should lead to stronger predictions of outcomes, easier interpretation of significant and non-significant results, and advances in our understanding of the ways religion expresses itself in critical life situations.”53 To define the function of religion, Pargament, Koenig, and Perez turn to figures such as Clifford Geertz, Eric Fromm, Sigmund Freud, and Émile Durkheim, who are central to the disciplines of anthropology, sociology, and psychology (but not theology) and who take religion as one of the objects of their disciplinary trade.

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For the RCOPE — the inventory of religious functioning — Pargament, Koenig, and Perez defined five functions of religion: meaning, control, comfort, intimacy, and life transformation. Each function is given three to six subscales, and each subscale has five items. Of these functions, only two — comfort and intimacy — open onto the idea of God, or rather, open onto the idea of something transcending the individual. It is important to keep in mind that psychology is primarily about the individual, and that psychologists concern themselves with the self and the relation of the self to itself and to society; and that sociology is primarily concerned with society, with the larger body of people and its relationship to the individual. In other words, in terms of functioning, one does not necessarily have to deal with genuine claims about the relationship of the individual and society to the Other writ large, that is to say, to a God. Society and its functioning serve as that which not only constitutes but transcends the individual. Thus, for Pargament, Koenig, and Perez, one can use the idea of God as a placeholder for the social, which “transcends” the individual.54 Yet “[r]eligion has its darker side.”55 While most of their measures of religion and religious coping focus on the “positive” side of religion, Pargament, Koenig, and Perez are also willing to entertain the negative side of religion in “the spirit of comprehensiveness and scientific openness.”56 The use of notions such as God and the demonic is primarily dualistic. However, God and the demonic are not the poles of the dualism; rather, the poles are “positive” coping, which promotes better social functioning, and “negative” coping, which gets in the way of social functioning. For example, one of the social functions of religion, according to the RCOPE, is the creation of meaning. Under the heading of meaning are several subscales: “Benevolent Religious Reappraisal,” “Punishing God Reappraisal,” “Demonic Reappraisal,” and “Reappraisal of God’s Power.” Each subscale has five items. For example, under the subscale “Punishing God Reappraisal,” the five items that respondents rate using a four-point Likert scale are as follows: “Wondered what I did for God to punish me”; “Decided that God was punishing me for my sins”; “Felt punished by God for my lack of devotion”; “Wondered if God allowed this event to happen to me because of my sins”; and “Wondered whether God was punishing me because of my lack of faith.”

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One can easily see that the inventory is designed to uncover those who believe that God is punishing them, and it takes for granted that this belief gets in the way of the return to normal social function. The unit of analysis of religiosity as devised by RCOPE is social functioning of the individual within society. Thus, characterizations of religion by psychology and sociology — as the disciplines devoted to analysis of the individual and society, respectively — come to define the good life. The good life is what promotes harmonious human function within the social setting. It is not defined in terms of robust, overtly theological categories, such as the worship of God, the sinfulness of humankind, or the need for forgiveness for our sins. The reason for this, of course, is that not all individual psyches within a social group have robust theological categories. So general or generic categories are used, ones that can be applied to more than one subgroup within a society. The goal and the social function of medicine and its subdiscipline of clinical psychology are to create assessments that can be applied universally, to all. Whether “Jew or Greek,” as Scripture says, we are all one under psychological or sociological assessments. The RCOPE inventory assesses religion as conceived by Pargament, Koenig, and Perez: religion as primarily concerned with promoting social cohesion and the place of the individual within that larger social order. Moreover, the analysis does not require an actual God to exist; even if God is a figment of the imagination of an individual, the figment can either promote social functioning or get in its way. The RCOPE, then, is primarily concerned with the promotion of medical, psychological, and sociological intervention to assist patients in becoming or remaining functional within their society.

s p ir it ua l  a s s e ss m e n t

While the use of religion in tools such as RCOPE might be functional and has little to do with actual, believing people, surely this is not the case in the area of chaplaincy. Yet attempts to assess spirituality, if not religion, are also common here. For my second example, I have chosen a model of spiritual assessment that is not completely subservient to

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the disciplines of psychology and sociology. Its principal creator, Fitchett, who is a hospital chaplain and researcher, is in my estimation one of the more thoughtful proponents of spiritual assessment. He does not opt for paper and pencil assessments. Instead, he chooses to remain true to the centrality of narrative in the history of pastoral care and within religious and robustly theological traditions. For Fitchett, interpretive humility and pastoral judgment are central features of spiritual assessment; his model is thus user-dependent and not readily applicable to everyone, and in that sense it is an inefficient tool for the health-care system. In spite of these features, Fitchett and his colleagues decided against the use of substantive models that are dependent on overtly religious themes, such as Paul Pruyser’s model of assessment, which is dependent on Protestant theology, and McSherry’s model, whose questions are written from a Christian perspective. As noted by Fitchett, functional models are more readily applicable than substantive ones to society in general and to diverse populations.57 Fitchett also explicitly chose a “whole person” model, in line with the rise of the biopsychosocial model of health care. In Fitchett’s model, which he calls the “7 x 7 model,” seven holistic dimensions are evaluated. They are holistic in that, taken together, they exhaustively cover (supposedly) all areas of human living. The seven dimensions are the medical; the psychological; family systems; the psychosocial; the ethnic and cultural; the societal; and finally, the spiritual.58 Each dimension is assigned its own expert. The doctor covers the medical dimension; psychiatrists and psychologists cover the psychological and family systems dimensions; and the social worker covers the psychosocial and the societal dimensions. Each of these persons is supposed to be an expert in the ethnic and cultural dimension, and the hospital chaplain is the expert in the spiritual dimension. Fitchett divides the spiritual dimension into seven subcategories: beliefs and meaning; vocation and consequences; experience and emotion; courage and growth; ritual and practice; community; and authority and guidance.59 In his explanation of each of these subcategories, he appeals only once to the concept of the divine, in the subcategory of experience and emotion.60 The purpose of spiritual assessment is to leave

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no aspect of human existence unaddressed,61 but also to be broadly applicable to a diverse society. The final purpose of this spiritual assessment model is to serve as the self-reflexive grounding of the discipline of spiritual caregivers. The mastery of the methods of spiritual assessment is the touchstone of a professional, expert identity, for it allows the pastoral care provider to reflexively examine the successes and failures of his own practice.62 Fitchett found this feature to be very important in the 1980s, when chaplaincy in hospitals was under threat with the rising costs of health care.63 Even today, hospital chaplains must show their value to the health-care system. There are numerous calls for chaplains to assess their activity and to prove that they do something important for the hospital. In other words, by creating themselves as experts, chaplains are able to show that they promote the social functioning of the healthcare system, and tools of assessment are part of promoting that professional identity. Risking further inefficiency, Fitchett’s model consists in a series of open-ended questions in each of the seven spiritual dimensions. Thus, the 7 x 7 model of assessment does not attempt to numerically capture the religious or spiritual dimension; yet its descriptive nature allows for functional control at two different levels. First, it is devised to comprehensively address all socially functional aspects of human thriving insofar as health issues challenge social functioning. Second, the spiritual assessment becomes the means by which the chaplain can show her value to the medical establishment. Pressures to prove one’s value to the system should be placed in the broad context of the thesis, as described by Alasdair MacIntyre, that the two greatest values of postEnlightenment thinking are efficiency and effectiveness.64 Effectiveness is defined by the domain of the social; efficiency is what does the job quickly and cheaply. The biopsychosocial model, now defined more comprehensively as the biopsychosociospiritual model of medicine, has always been about controlling social function and about medicine’s role in promoting the effective functioning of the body politic. The great high priest who promotes social function within biopsychosociospiritual medicine is the doctor, and his chief altar boy is the generic chaplain,65 who has taken on the values of the institutions of health care within the larger sociopolitics of Western society.

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s o c i a l  p o we r ,  so c i al  K no w leDGe

In chapter 2, I described the relationship of Pierre Charles Alexandre Louis’s médecine d’observation to physiology and the way in which mathematical constructions of medicine developed in relation to political arithmetic and Statistik— the numerical and the narrative practice of describing matters of state. I also discussed the way in which statistics were used socially by medicine in the rise of eugenics; the relationship of the English empirical tradition to the rise of modern statistical psychology; and the ways that statistical psychology has been taken up for the purposes of better understanding the polis. Similarly, in the tools for the assessment of grief and of religiosity/spirituality, we find the different dimensions of Statistik and political arithmetic, namely, narrative and numerical description. The pendulum in mathematics and in its application in statistics has always swung between numerical realism, with its quasi-mystical understanding of number and its relation to things, and an extreme nominalism, where numbers are superficially laid over phenomena as a kind of language, or lens, with no real or causal relation between things and numbers.66 In statistics, and particularly in its use in medicine, we tend toward the latter extreme nominalism; statistics, most think, makes no causal claims about relations in the series of observed phenomena. At best, we can only make statements about correlations between two or more phenomena. Yet our trust in number remains at an all-time high in medicine; give something a number, and it appears to be real. This is especially true in evidence-based medicine and in the drive to assess everything from grief to spirituality. For all of our protestations against finding causal relations through statistics — although, as Nancy Cartwright has shown, it is impossible to set up a statistical analysis without making some sort of deep structural or metaphysical conjecture about matter, motion, time, change, cause, or even explanation67— we trust those numbers implicitly when it comes to making decisions. In fact, we do not make changes to practice, whether social or medical, unless we have numbers — or data, as they are called — to back up our decisions. Statistics gives us an accurate picture of the state of the world. Numbers give us a sense of political neutrality over and above description.

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Numbers are factual and applicable across multiple different instances. Or so the story goes. Numbers allow for the person administering a test to claim that the test is applicable universally because it is repeatable across a large number of people. It is democratic in this way, and because the numbers can apply to all equally, they must be politically neutral. Therefore, numbers give an appearance of neutrality to the one doing the measuring. Numbers give an account of the world and do not change the world, or so the political story goes. My biases, political or otherwise, do not contribute to spiritual assessment inventories. “Trust me; I am the neutral social scientist.” Donald Polkinghorne, a psychologist and philosopher of the human sciences, argues that on a “postpositivist” conception of science, Science is not seen as an activity of following methodological recipes that yield acceptable results. Science becomes the creative search to understand better, and it uses whatever approaches are responsive to the particular questions and subject matters addressed. Those methods are acceptable which produce results that convince the community that the new understanding is deeper, fuller, and more useful than the previous understanding. Such an understanding of methodology means that it is not enough to know the recipe for carrying out a research design. It also means that methods that were discarded because they did not produce certain knowledge need to be reexamined for their usefulness in improving our present understanding of the human realm.68 In most of Western scientific practice, the endeavor of practitioners of science — the “on-the-ground” researchers — is to answer carefully circumscribed questions designed to better assist the individual to function within society, or to assist society to better achieve some end. Psychology, sociology, and anthropology — to name three sciences with the most influence on medicine — are still engaging in creating “truths” of human existence all directed at the promotion of social functioning. One only has to turn to a standard text of social and psychological research to see a relationship between the creation of new knowledge, the ends of society, and the use of statistics. The first step in research in the human sciences is to create a definition of what it is that one wishes

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to know. Practitioners of the human sciences realize that social and psychological objects are not “real” in the way that a rock is real.69 Thus, research in the human sciences relies heavily on definition — nominal definitions, given that their objects are not palpably real. Grief, for instance, is a cultural construction, which, in order to be studied, must be accurately defined; the same holds for religiosity, for spirituality, and even for coping. Yet definition is not enough. The conceptual definition must also define a set of indicators that will allow the researcher to recognize and register the concept of grief, or spirituality, or coping, as something that is empirically observable. The scientist thus creates an operational definition, one that allows the concept of, say, “grief” or “religious coping” to be seen in operation. “Conceptualization is the refinement and specification of abstract concepts, and operationalization is the development of specific research procedures (operations) that will result in empirical observations representing those concepts in the real world.”70 Moreover, the two processes of conceptualization and operationalization are circular. They form a continuous “loop,” in which the conceptual name and definition are refined in the process of operationalization, which leads to better conceptualization and operationalization.71 The carrying out of the scientific study, in which people or communities are empirically tested, also results in the refinement of concept and operation. The reflexive nature of this process is sometimes referred to as the conceptual funnel, in which a more and more refined definition is produced, until it finally becomes a standard definition, as with “intelligence” in the IQ test. Those who create inventory tests are always hopeful that their measure attains the status of defining for all time something such as “intelligence” or “religious coping” or “grief ” or “spirituality.” They want their test to become the gold standard. The idiosyncrasies of the human experience of grief, for example, are removed in order to employ a concept that can be shown to be robust, repeatable, generalizable, and broadly applicable at the level of empirical measurement in a population. In a sense, the idiosyncrasies and particularities of “grief” or “spirituality” disappear; in a sense, they must die. The particular experiences of particular people about particular losses are of little importance to such inventories. The “thing” examined in a study is the product of the researcher, the subject, and not

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of the particular person, the object, under study. Because of the circular procedure of conceptualization, definition, and operationalization, followed by testing and refinement of concept and definition, researchers can claim that thay have contributed very little to the “thing” being measured; rather, the process results, finally, in an objective product that applies to everyone. “What” this product is, is what the researcher has constructed the test to find. Of course, in the processes of conceptualization, operationalization, and testing, one cannot at all be sure that what one thinks one is measuring corresponds to a reality independent of the process of conceptualization and operationalization. Researchers, however, will respond that this objection is irrelevant, because the goal is not a truthclaim but a claim to functionality and utility, to pragmatism. Such an appeal to functionality, however, already betrays a bias of social scientific researchers, namely, their assumption that there is a functioning thing out there called the “social”— the mécanique sociale, as I articulated in chapter 2. It is this larger concept of social function that serves as the normative standard by which to judge the process of conceptualization and operationalization, and by which to judge the successes of psychology, sociology, spirituality, and medicine. In this sense, the social sciences are wedded to a functional nominalism — a nominalism that is always bounded by the larger process of social scientific inquiry itself. This points to another oddity with respect to the process of conceptualization and operationalization: the study as a whole is less about what the participants in the community or society are actually doing, or what they believe, than about the original reason the human scientists are asking their question. In other words, as long as the concept is shifting with operation, and the operation is shifting in line with conceptual definition, and both are still achieving that goal for the sake of which the question is being asked, then it does not matter what in particular is lost by any patient; those features are dead, but the knowledge gained is still useful. Put differently, the social scientific research on the uses of religion in health care does not need the content-rich understanding of God as three persons in one, or God as experienced in the Holy Eucharist, or God as encountered in obedience, or God as encountered in suffering or compassion, to actually see how the religion works socially. One can still see how “God” operates in the social functioning of psy-

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chology or religion. The specific content of the experience of grief or of spiritual need is as important in its differences between believers in the same (or no) religion as it is in the difference between the adherents of a specific religion and no religion at all. Regardless of whether one has metaphysical commitments or eschews them, what makes knowledge important is what can be done with it. The telos need not be a grandiose human telos, such as the vision of God. The telos can be mundane and functional, and that is what directs research. That for the sake of which something is done must merely stand at the bar of social function, whether this means psychological functioning, or some goal defined by the medical community, or other social goals. The human sciences, in short, are inextricably related to the polis, to the political dimension. We know that knowledge is power — the power to relieve the human estate. Yet we have not taken seriously Foucault’s point that power includes the power to define new knowledge and to create new functions that are better fitted to the function of a person within a functioning society — a body within the polis. In the social sciences, power is dispersed away from the government and moved into extragovernmental structures of governance. It is placed in the hands of the doctor, the psychologist, the social worker, or the spiritual experts who provide for the care of bodies and souls. Thus, the governance of the body and soul becomes more subtle; it is almost unrecognizable as power because it has been internalized. This power resides in the hands of those helping professions, those whose disciplines are to help care for people, body and soul. Or, as Foucault might say, these professions exert disciplinary power; they discipline the body and soul. Biopsychosociospiritual medicine is a politics, not in the sense of governmental control through duly constituted means of defining, executing, and interpreting law, but in the defining (through conceptualization and operationalization), in the executing (through the deployment of various inventories of assessment and interventions), and in the judging (through reflexive assessment) of the lives of patients. Biopsychosociospiritual medicine is comprehensive. It is holistic, covering the whole of human thriving. It is about total care, and in this sense it is totalizing. In the processes from conceptualization to intervention, not

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only do we achieve total patient care, but each discipline — medicine, psychology, social work, and chaplaincy — also defines its expertise, constituting itself in its own processes. There is a final area, however, that medicine must still master. Engel showed to medicine how it must come into line with social functioning. Kübler-Ross pointed to inefficiency in the care of the dying. Those who “do not go gentle into that good night” are detrimental to social functioning. Once it has been armed with new assessments of grief and the spiritual, and with the expert discourses of the helping disciplines, medicine is ready to expand its dominion over the dying, to discipline both the bodies and psyches of the dying, and, indeed, to extend itself beyond the grave in the psychological care offered to family and friends after the deceased is gone. This purportedly new care — a comprehensive, total care — is found in today’s concept of palliative care.

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chapter

9

The Palliating Gaze

Like Elisabeth Kübler-Ross, Dame Cicely Saunders, the founder of the modern hospice movement, addressed questions about the way medicine treated those for whom no curative therapy was possible. Whereas Kübler-Ross employed a psychological and psychiatric lens, Saunders addressed the plight of the dying primarily in terms of medical interventions for pain control. Her motivation, however, was not a purely medical interest. Early in her career, Saunders had trained as a nurse and later as a social worker. In the late 1940s, while carrying out her duties as a social worker, she began to work with David Tasma, who was dying. She grew attached to her client and was appalled that the medical community had essentially abandoned him. After his death, Saunders, who believed that her vocation to assist the dying was a calling from God, attended medical school and became a physician. While at St. Joseph’s Hospice in London, she pioneered many treatments for the gravely ill, including the scheduled dosing of pain relievers, and these won her both local and national fame in Britain.1 However, it seems clear that the most important thing that she did for Tasma was to offer him friendship and companionship through his dying.2 Saunders was convinced that in his dying, Tasma felt not only physical pain but suffered deeply from a different kind of pain: emotional, psychological, social, and even spiritual pain. From her early days as a •    253

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nurse, she felt that medicine had abandoned those for whom no cure was possible and did not even deal well with the physical pain of the patient. In dying, the patient, she would later hypothesize, experiences not only physical pain but “total pain.”3 By “total pain” she meant a complex of physical, emotional, social and spiritual elements. The whole experience for a patient includes anxiety, depression, and fear; concern for the family who will become bereaved; and often a need to find some meaning in the situation, some deeper reality in which to trust. This became the major emphasis of much lecturing and writing on subjects such as the nature and management of terminal pain and the family as the unit of care.4 In coining the phrase “total pain,” Saunders displayed insights that predated Engel’s biopsychosocial model of medicine. “Total pain” is the pain that is unmasked in dying. In order to respond to “total pain,” therefore, total care was required. “Total care” is offered as a remedy for the abandonment of patients whose physiology cannot be fixed. This notion of total care, as J. Andrew Billings has noted, became the concept of palliative care.5 Although Saunders’s main contribution to our time has been in reclaiming care for patients who cannot be cured by physiological medicine, she has also contributed to physiological medicine by clarifying the medical understanding of pain, promoting the use of narcotic pain medication, and addressing the fears that patients might become addicted. With Saunders’s work, then, medicine and physiology began a shift that would take twenty-five to thirty years to complete, in which pain became thought of not merely as a symptom or sign of disease but as itself a treatable condition. Pain can be treated with medication (or surgery, for that matter), and as such, pain is a kind of physiological disorder that could be controlled. Saunders both strengthened modern medicine’s control of physical pain through a better physiological understanding of the treatment of pain, and also broadened medicine by introducing a multidimensional mode of engaging the dying. She called medicine to account for its treatment of the dying, in describing a kind of care that addressed “total pain”— biological, psychological, social, or spiritual pain. Therefore, in a way, her approach was ahead of its

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time in that it treated the body and psyche in their social and spiritual contexts. By acting on the care and concern she had for her patients, first as a nurse and then as a social worker, Saunders defined a problem that the practitioners of medicine had been missing; at the same time, as a doctor, she gave medical answers to pain and suffering, further bringing into relief for doctors what they had missed in treating those whose physiology was failing. However, within a few decades, as I will argue, her philosophy of “total pain” addressed by “total care” mutated into the control of death through a biopsychosociospiritual medicine and through the exercise of the disciplinary power of the social sciences. I demonstrate that shift in this chapter. The medical practitioner, through the institutionalization of palliative care, can now reach beyond the grave to the family, those loved by the deceased, to control their grief. Treating “total pain” with “total care” can become totalizing.

Be f o r e  pa l l i ati v e  c a r e

After medical school, Saunders’s first job was as a research fellow in the pharmacology of pain control at St. Mary’s Paddington. As part of her research project, she worked closely with the dying — who were not only her patients but also her research subjects — at St. Joseph’s Hospice. St. Joseph’s Hospice was founded in 1905 by the Irish Sisters of Charity and was animated by a traditional understanding of Christian charity and hospitality; of its hundred fifty beds, forty or fifty were devoted to the care of terminal patients and the rest to the poor, frail, elderly, or those with long-term chronic medical problems for whom there were no social services.6 Hospice at St. Joseph was a way of life, but it was not primarily about the care of the dying. The nuns devoted themselves to the commandments of Matthew 25. Indeed, the word hospice — like hospital — has its roots in the chief monastic virtue of hospitality, the receiving of anyone who might be in need. It also referred to the hospitum, which was an area of medieval monasteries devoted to caring for the sick, but also the poor and the traveler.7 Thus, St. Joseph’s Hospice understood itself as extending the compassion offered by Christ to the “least of these,” and in offering it, believed it was

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offering compassion to Christ himself. Christ is the chief consoler of the outcast; Christ is also the recipient of charity. St. Joseph’s Hospice, then, was a contemporary version of the medieval monastic hospitum. In medieval European society, cura corporis, the care of the body, belonged to the doctor, and cura animae, the care of the soul, belonged to the Church or the priest. In monastic houses, these two functions were not separated from one another; they necessarily were taken together.8 The dichotomy of body and soul was not part of the reality of medieval monasteries, for in offering refuge in material deprivation, one also ministered to the soul. Cura was a much broader concept than mere cure; indeed, it was care. Of course, notions of care predate medieval society. Care in its various forms is one of the most basic activities of humankind. It originates in the home, in the family, and in a community of people, and it existed long before there was ever a specialty called health care, nursing care, or palliative care. Foucault observes that prior to the latter part of the eighteenth century, care was offered not by specialized practitioners but by families, who might consult a healer of some sort. The hospitum, then, was not thought of in the same way as we think of a hospital. In addition to offering hospitality and care to the poor, the traveler, and the homeless, the hospitum was a place of refuge for those who were ill and had no family. Over time, as Diego Gracia points out, the main mode of human relations moved from the extended family to the nuclear family due to the pressures of city-dwelling and industrialization, and it became increasingly difficult for families to offer care to a family member who fell ill. Thus, care became more specialized.9 In France, through a series of developments in politics and in medical thinking, the clinic was born, as Foucault traces, and the responsibility for care came under the purview of the state. The new way of medical seeing and the practice of opening the body gave rise to a new kind of medicine. Thus, in medicine, what doctors do — namely, cure — becomes gradually disentangled and cordoned off from the kind of care that was offered in medieval religious communities and in more modern places such as St. Joseph’s Hospice. Care and cure are separated by medicine. Our words care and cure come from the Latin verb curo. Our concept of cure took centuries to develop, and it became something offered

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to those with a disease. It developed in the manner that I have described in earlier chapters with the rise of science. The two concepts of care and cure each emerge over time as a separate concept grounded in separate sets of practices. Cura corporis meant the manipulation of the mechanisms of the body, and became the cure of the body. Cure, in time, came to mean the reversal of a disease process and became associated with the intensification of care — now understood as cure, or therapy— and with the rise of intensive care units, or intensive therapy units, as they are called in Britain.10 Care, in contrast, came to mean a compassionate response to those whose bodies or psyches were in need.11 In the new, curative medicine, care was offered not by doctors but by nurses.12 When cure was not possible, doctors did not know how to treat patients. Saunders’s diagnosis of medicine was accurate. Care could still be found in the practices of nurses and of religious communities, but not among medical practitioners. Thus, it is more accurate to say that Dame Cicely Saunders gave birth to the modern hospice movement and brought into relief the kind of “total care” that would be necessary to take care of the dying. She longed to bring the hospitum to the clinic, which was not an easy task or one with immediate results. The mutation of Saunders’s idea of total care into palliative care would parallel the acceptance of hospice by the larger medical community— insofar as hospice has been accepted. The concept of palliation, like that of hospitum and cura, has a long history in medicine, dating back to the seventeenth century.13 However, until the middle of the twentieth century, palliation did not carry the same meaning as what Saunders meant by “total care.” Indeed, the Latin verb pallio means to disguise or to cloak. Pallium, the corresponding noun, means a cover or a cloak. It is related etymologically to the English word pall, as in “pallbearer.” A pall became a death shroud, a cloak. Thus, palliation was understood as a means to cover over symptoms without recourse to their origins in physiology, and palliative medicine was understood as a medicine that focused on the minimizing of symptoms. Yet it also became the medical specialty to cover over the symptoms of death, even while doing so physiologically. Saunders clearly meant something different by the original phrase “total care”; she did not embrace the term palliative or this characterization of hospice care until later in her life.

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In its present version, hospitality in the form of the hospitum, or, as it was called in the early twentieth century, “the hospice,” is pulled from its roots and traditions, where it had been offered to all people on their journeys — both literal and figurative ones. It became a merely medical idea. In the contemporary scene, the hospitality of hospice becomes a more humane response to those who cannot be cured, because it offers something that ought to be offered to the dying — those who cannot be sustained by technologized physiological medicine, indeed, those who have been harmed by cure in the absence of care. For the care of the dying — dying patients, whether on the curative or palliative tracks — the doctor now has at her disposal different modes of control — biological, psychological, sociological, or spiritual. This is a far cry from what Saunders had in mind. Care at the end of life is no longer the care offered by family, nurses, nuns, or their counterparts; it is deployed, for the patient’s own good, by experts. Cura corporis and cura animae become the venue of professionals, who are bent on mastering death and finitude and fear and grief.

D e fi n i n G  pa l l i at i v e  c a r e

The use of the term “palliative care” seemed to change in 1973, when Balfour Mount opened the first palliative care unit at the Royal Victoria Hospital in Montreal.14 Initially, he had wanted to call the unit a hospice, but in French the term “hospice” was already used to denote a nursing home for the poor and destitute, along the medieval lines of hospitality.15 Unlike the hospice, which originated outside the medical establishment and then gradually moved toward it, palliative care began in the hospital in much the same way as the ICU.16 The palliative unit was meant to be the counterpart of the intensive care (cure) or intensive therapy unit. The intensity of activity in palliative care centers around the control of symptoms, first as a strictly medical endeavor, and then as a multidisciplinary endeavor. The Oxford Textbook of Palliative Medicine distinguishes between palliative care and palliative medicine, the latter of which is the work carried out solely by doctors, and the former the work of a multidisciplinary “team of doctors, nurses, therapists, social workers, clergy, and

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volunteers.”17 In 1990, the World Health Organization defined palliative care thus: Palliative Care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social, and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with anticancer treatment.18 Clearly, Saunders’s definition of “total care” is operative in this definition, rather than the mere control of symptoms, which had been the focus of palliative medicine. In addition, the palliative care model of medicine is deemed appropriate early in the illness rather than late. Billings has argued that the World Health Organization’s definition of palliative care as “active total care” is unhelpful — after all, medical practitioners of curative medicine do not think of themselves as offering inactive or partial care.19 This objection is in part a political move; Billings’s motivation is to define palliative care for medicine as a whole, especially in opposition to medicine as it had been conducted. He prefers “comprehensive care” to “palliative care,” especially since the former term already has a history in the health services literature;20 as such, it is more likely to be accepted by medical practitioners, and, he argues, it maintains medical practice within the context of efficiency, effectiveness, and economy — the primary goals of health services research. He also wants to include in his definition of palliative (or comprehensive) care certain other attributes of palliative care, such as “interdisciplinary,” “coordinated,” “integrated,” “humanistic,” and “accessible.”21 He entertains but rejects as inadequate a brief definition from the original edition of the Oxford Textbook of Palliative Medicine, where palliative medicine is the “study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus is on the quality of life.”22 Neither the WHO definition nor the definition of the Oxford Textbook, Billings argues, accurately captures the professional aspects of palliative care.23 In other words, for him, the field is not merely defined

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by what it does; it must also be defined by the experts who do it. Billings ultimately defines palliative care medicine as [c]omprehensive care, provided by an interdisciplinary team, for patients and families living with a life-threatening or terminal illness, particularly where care is focused on alleviating suffering and promoting quality of life. . . . Major concerns are pain and symptom management, information sharing and advance care planning, psychosocial and spiritual support, and coordination of care, including arranging for excellent services in the community.24 Thus, the palliative-care physician is a specialist. She is holistic in that she offers “total care,” covering all aspects of the patient’s life, and using assessments and interventions for the promotion of patient wellbeing. Like other physicians, the palliative-care specialist has expertise and exercises judgment in the management of pain and emotional, psychological, social, and spiritual distress. In 2001 a group of experts in palliative care from around the United States met in order to standardize palliative care, with the goal of improving the quality of care. This group initiated the National Consensus Project for Quality Palliative Care (NCP), which in 2004 published the first edition of the Clinical Practice Guidelines for Quality Palliative Care. The NCP Guidelines offered a “national definition of palliative care,” with an overall goal of achieving “quality by systematic evaluation of care, criteria for outcome data, and the development of validated instruments.”25 The NCP definition is extensive and begins by explaining the goal: The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.

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The NCP definition continues with the following: Palliative care is operationalized through effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care with consideration of patient/family needs, preferences, values, beliefs, and culture. Evaluation and treatment should be comprehensive and patient-centered with a focus on the central role of the family unit in decision making. Palliative care affirms life by supporting the patient and family’s goals for the future, including their hopes for cure or life-prolongation, as well as their hopes for peace and dignity throughout the course of illness, the dying process, and death. Palliative care aims to guide and assist the patient and family in making decisions that enable them to work toward their goals during whatever time they have remaining. Comprehensive palliative care services often require the expertise of various providers to adequately assess and treat the complex needs of seriously ill patients and their families. Leadership, collaboration, coordination, and communication are key elements for effective integration of these disciplines and services.26 The definition expands these ideas and weaves together the notion of professional expertise and the function and goal of that expertise; in particular, it emphasizes physician leadership in coordinating the expertise of various disciplines and services. In Billings’s definition and in the NCP definition of palliative care, as well as in recent editions of the Oxford Textbook of Palliative Medicine, we see something very important happening. First, the definition of “palliative care” becomes increasingly related to those who practice it. Second, palliative care becomes something that can be offered at any time, not only when the patient is dying, and even when treatments are curative. Palliative care is “total care” or “comprehensive care”; it is allencompassing. If palliative care becomes ubiquitous, however, it loses its force; consequently, a distinction is made between nonspecialist palliative care and specialist palliative care in both the NCP Guidelines 27 and in the Oxford Textbook. When should palliative care begin in the course of an illness? According to the Oxford Textbook,

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The answer is that non-specialist palliative care, that is to say palliative care provided by the patient’s general practitioner or family physician employing the principles of palliative care, starts at the time of diagnosis and continues until death, whatever the underlying pathology. Every person has the right to expect relief from suffering, whatever its nature, whether or not its cause can be eradicated. Every person has a right to expect their doctors to be concerned with the quality of their life.28 In contrast, Unlike non-specialist palliative care which is appropriate from the day of diagnosis, specialist palliative care is usually only needed when the problems of the patient are either so numerous, so severe, so difficult to relieve, or so unusual that a team with expert and specialist skills needs to be called in. A key member of such a team will be a palliative medicine specialist.29 The authors further note that “[b]ecause palliative care is holistic care — equally concerned with physical, psychosocial, and spiritual aspects of each patient — all care should be holistic.”30 This statement is self-referencing and the logic questionable. A main point, however, appears to be that although nonspecialist palliative care should be practiced by every doctor, specialist palliative care for complex patients is still necessary, and such care is intimately related to the disciplinary training of the doctor. Palliative care is not limited to the body, psyche, familial/social relations, or the spirituality of the patient, nor is it limited to patients with rapidly progressing diseases with high mortality rates, such as many cancers. Specialists in palliative medicine have called for palliative care in other chronic diseases that are life-limiting but are perceived to be relatively slow in progression, such as congestive heart failure, chronic obstructive pulmonary disease, and chronic renal failure.31 Palliative care has set its sights beyond mere disease boundaries. Since life-shortening diseases know no boundaries, palliative care knows no boundaries. “Few things can be more important in the world than that palliative care

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becomes available worldwide as a matter of greatest urgency.”32 Palliative care must fight for its patients in the political arena.33 If palliative care is to fight for its patients, it must have well-defined parameters and must employ the best tools that evidence-based medicine has at its disposal, drawing on epidemiological and statistical medicine to bolster its claims. The use of mortality statistics to establish need for palliative care assumes that the causes of death likely to be indicative of such need can be identified in these statistics, and that the data are accurate. . . . Outside of cancer, the use of mortality statistics is more problematic. . . . In addition, there is growing evidence that people with severe heart failure have palliative care needs. When they die, however, their deaths will usually be attributed to the underlying cause of the heart failure, rather than to the heart failure per se. Mortality statistics will be of little use in establishing the need for palliative care amongst these patients.34 The palliative-care specialist must become a scientist and must parse the world precisely in order to show the ubiquitous need for more palliative care. Moreover, palliative care must be something more than love and companionship, as was offered by Dame Cicely Saunders. Palliative care must abide by the rules of regular medicine. The Oxford Textbook of Palliative Medicine states: [T]here is more to palliative medicine than “tender loving care,” a high level of sympathy, and time and inclination to sit by the bedside holding a patient’s hand. Palliative medicine has a large and growing knowledge base. It calls for heightened skills in communicating (including listening) and an educated understanding of the training and skills of colleagues in other disciplines and professions.35 In short, it is not enough to sit with someone holding her hand as she dies; that does not require the prowess of medical science. Palliative care is not what Saunders offered to David Tasma. Palliative care is

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specialized care, something that family and friends cannot offer the dying. Even Saunders could not offer it, if all that she had to offer Tasma were the skills of the nurse and the social worker.

D om i n i o n

In the absence of physiological medicine, one must turn to médicine d’observation, or evidence-based medicine, and to mécanique sociale, or the assessment of social functioning of palliative care, in order to achieve scientific robustness. As discussed in chapter 8, the modus operandi of the social sciences follows a familiar pattern: conceptualization, definition, operationalization, and testing, where a concept is refined and redefined in a circular self-correcting, or self-fulfilling, process. As I have shown, the modes of assessment come to shape not only the practice of the discipline but the disciplinary expertise itself. I have already laid out several definitions of palliative care, and in each definition, the consistent feature is the totality of care offered by palliative-care specialists to meet the totality of pain experienced by the dying. Models of suffering animate models of palliative responses to suffering. One set of authorities defines suffering as an “aversive experience characterized by the perception of personal distress that is generated by adverse factors that undermine quality of life.”36 Nathan Cherny offers a triangular model of suffering. His model accounts for the interdependency of the patient, the doctor, and the family/social relations by showing the way that each of these — each point of the triangle — can increase the distress of the others. They cannot escape each other. Patient distress is encountered by the family and by the health-care professional, and both become distressed by the patient’s distress. The familial and professional distress might be perceived by the patient, such that the patient becomes more distressed. Thus, this triangular model of suffering is dynamic. “[T]he suffering of each of these three groups is inextricably interrelated such that the perceived distress of any one of these three groups may amplify the distress of others.”37 Suffering, however, can be difficult to discern, especially suffering that does not make itself easily known in easily identified signs and symptoms. The physician must look more deeply if she is to find suf-

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fering. Thus, Cherny defines it as distress, which in turn is operationalized such that modes of assessment can be developed to identify and measure it. Under the category of patient distress, numerous areas lend themselves to operationalization and assessment: (1) physical symptoms, such as pain, fatigue, weakness, dyspnea, delirium, nausea, and vomiting; (2) psychological symptoms, such as adjustment disorders, depression, anxiety, and various types of problems that might lead to these disorders, such as distressing physical symptoms, disability, unresolved previous experiences of loss or separation, feelings of frustration, strained personal relationships, controlling personality trait, and difficulties in adapting; (3) existential distress, including hopelessness, meaninglessness, disappointment, remorse, death anxiety, and disruption of personal identity; and (4) family/social distress, such as distress among family, friends, and health-care providers.38 Under factors that might contribute to family distress, Cherny lists the following: (1) psychosocial factors, such as emotional strain, physical demand, uncertainty, fear that the patient may die, alteration in roles and lifestyles, financial concerns, ways to comfort the patient, perceived inadequacy of care services, existential concerns, sexuality, and nonconvergent needs among family members; (2) grief factors, such as anticipatory grief and deterioration in the patient’s condition that challenges ongoing denial; (3) caregiver burden factors, such as strains put on physical, emotional, and psychological resources of the family, as well as conflicts among caregivers; and (4) financial distress, caused not only by the loss of income from the patient but by the cost burdens of professional caregiving and by the potential job loss of a familial caregiver.39 Among health-care providers, distress can be brought on by a myriad of factors: (1) constant exposure to suffering, loss, and grief, high work pressure, frequent life and death decisions, high consumer expectations, interstaff conflict, and severe patient dependency, debilitation, and disfigurement; and (2) causes of stress that differ for different kinds of professionals, such that physician distress is different from nursing distress, and both are different from chaplain distress.40 Cherny’s point is that no area of patient, family, or health-care professional life should go unmonitored. He states that the alleviation of suffering “is predicated upon careful case assessment, identification of

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care needs, formulation of a multidisciplinary therapeutic intervention to address those needs, and the provision of ongoing monitoring,” together with a desire to change the care plan as the needs change.41 Thus, proponents of palliative care advocate a myriad of assessment tools. Total care requires total assessment: for causes of stress, for particular family needs, for particular patient needs, and for potential health-care professional needs, thus minimizing distress within the triangle and thereby reducing the suffering of the patient, the family, and the healthcare professionals. The model itself reduces distress by identifying the possibilities and means of intervention. The NCP Guidelines, which attempts to systematize and standardize the multiple facets of patient and family care, distinguishes eight general domains of palliative care, as follows: the structure and processes of care; physical aspects of care; psychosocial and psychiatric aspects of care; social aspects of care; spiritual, religious, and existential aspects of care; cultural aspects of care; care of the imminently dying patient; and ethical and legal aspects of care.42 The eight domains are intended to assure quality palliative care and to serve as a roadmap for the future of palliative care. The goal of the Guidelines was to promote standards for quality in palliative care programs, and, in the absence of programs, quality care for those in need of palliative care services. To achieve legitimacy, the NCP sought and received support from the National Quality Forum (NQF) and the Joint Commission on the Accreditation of Health Care Organizations (JCAHCO). As noted in chapter 6, JCAHCO accredits hospitals, and the NQF is a private, nonprofit membership organization that was created to develop and implement national strategies for health-care quality improvement. NQF endorsed the NCP’s eight domains and created thirty-eight preferred practices “upon which to develop measures for palliative care” and “to promote recognition, [and] stable reimbursement structures.”43 Because NQF is a national leader in health-care quality improvement, according to the NCP Guidelines, “it offers palliative care both legitimacy and recognition within a broad healthcare focus, policymakers, and payers.” Moreover, since the federal government accepts such standards in order to provide schemes for “reimbursement, regulation, and accreditation, the significance of this endorsement cannot be overstated.”44 The NCP

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touts NQF’s work to create “rigorous, quantifiable quality indicators,”45 and does so without any hint of the incongruity in creating qualitative indicators that are quantifiable. Assessments beget instruments for intervention, which naturally themselves must be assessed, and thus assessments proliferate. As Cherny argues, An appreciation of the full diversity of factors that may contribute to suffering underscores the need for a methodical approach to the assessment of each individual case. The objectives of the assessment are to identify current problems that are a source of distress to each of the parties, to assess their care needs, and to evaluate the adequacy of the available resources. This evaluation must incorporate: medical variables in the patient, family, and available community medical system; psychological variables in the patient, family, and psychosocial community supports; and social and financial variables in the patient and family. Since both the patient and the family are part of the unit of care, assessment requires discussion with both. The clinician must maintain a clinical posture that affirms relief of suffering as the central goal of therapy, and which encourages open and effective communication about perceived problems.46 The patient’s, the family’s, and the health-care team’s biological, cognitive, social, economic, emotional, and spiritual life are all proper objects of assessment. These assessments, its supporters claim, will assist expert care providers to better understand the “inner functioning of the family, rather than just the outer dimensions of a patient’s life,”47 and presumably also better understand the palliative care professional’s inner functioning. The “outer dimensions” are the surface manifestations of cognitive, biological, social, emotional, and spiritual maladaptation, where the experts in the respective fields define “maladaptation.” These assessments must penetrate the surface phenomena to the functioning of the family and of the caregivers — medical and nonmedical alike — so that these, too, can be controlled through the discourses of experts.

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Finally, and of central importance, the assessments are a vehicle to improve the functioning of the discipline of palliative care itself. Not only will they penetrate the functioning of the patient, the family, and the health-care professional, but they will also help the field of palliative medicine to function efficiently and effectively— the two moral imperatives of contemporary institutional society.48 Take as an example a fairly routine study by Ruth Powazki and Declan Walsh. The study set out to psychologically and socially assess palliative care patients and their family caregivers. Powazki and Walsh’s final conclusion was that there are frequent last minute changes in discharge plans due to the patient’s changing physical and cognitive status, as there is inadequate social support (not enough help in the home) or the caregiver [a family member or friend] has functional limits (physically, cognitively or emotionally). This group of patients often required time-consuming interventions by team members.49 In this type of situation, they argue, assessments aid in the functioning of palliative medicine, first, by extending physical, cognitive, or emotional assessment to the patient’s nonexpert caregivers, not only to the patient. Second, the assessments help palliative medicine carry out its mission of efficiency in the use of time, efficiency in allocation of economic resources, and effectiveness of outcome. The assessment is the reflexive turning of palliative care onto itself, the speaking of itself to itself, a discourse on the discourse, as it seeks to maintain its own status in social functioning, in the mécanique sociale.

Ga z in G  o n  t h e  sp i r i t

While the efficient functioning of the palliative care team is important to the care of the dying, the goal is patient care, and more rigorous assessments of spiritual functioning are essential to that goal. In its list of domains the NCP, significantly, placed under the watchful eye of the physician the “spiritual” as well as the “religious, and existential” care of both patient and family. In the previous chapter, I discussed medi-

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cine’s attempts to master the spiritual dimension in order to improve the social functioning of medicine and of patients within society. Given that the hospitality of the hospitum, as well as of the modern hospice movement, was born out of the religious roots of Western civilization, it is no surprise that very early in the hospice/palliative care movement, spiritual care was of central importance.50 Yet Dame Cicely Saunders’s use of prayer and companionship was substantially different from the dominion of spiritual, religious, and existential care as articulated by the NCP. I now turn to examine closely the idea of spiritual assessment with regard to palliative care. There are too many models and ways of thinking about, defining, assessing, and intervening in spirituality in the current literature on palliative care to attempt to list them, let alone cover each in detail. I focus on three models of spiritual palliative care: briefly, on the positions of Tony Walters and of Allan Kellehear, and, at more length, on the model articulated by an NCP group called the Improvement in the Quality of Spiritual Care Consensus Group.51 My purpose is to indicate the proliferation of spiritual assessment models and the absurdity of such assessments. Before assessments of spirituality can be devised, a definition of spirituality must be articulated. Tony Walters suggests that there are three ways of thinking about the relationship of spirituality to palliative care.52 The first way is the idea from which a religious hospice grows, that is, the idea of a spiritual vocation; this, however, cannot be extended beyond the specific hospice with its religious commitments and practices.53 The second way is one that accepts that certain people are religious/spiritual and others are not, and holds that those who are religious/spiritual can seek guidance through chaplaincy care; the problem with this way is that it may fail to give total care to patients; the care of the spiritual dimension is added ad hoc, as opposed to being integrated with all other care.54 The third way accepts that, by definition of being human, all people are spiritual creatures, in that they seek meaning. This way acknowledges that spiritual beings might be spiritual in different ways; its limitation is that it universalizes what for most people, even nonreligious people, is very particular.55 Walters concludes that it is difficult to see how any of these three models differs

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from standard psychological care; indeed, he claims that Saunders herself seems to fall back on Victor Frankl’s psychological model.56 Allan Kellehear, who is in partial agreement with Walters’s discussion, argues that spirituality is highly complex and that a single, dictionary-style definition is impossible — which is certainly true. In general, he seems to endorse Walters’s third model, but he wants to broaden its definition of spirituality. Kellehear offers a functional definition, which focuses on the needs and dependency of the patient and the patient’s need to transcend his needs: Spiritual needs are complex needs. Some of these may indeed be really social needs. Others are psychological needs overlaid or underpinned by religious desire. Some other forms of human desire are openly about a need to connect with the sacred, the supernatural or divine. All of these are dimensions of spiritual need but they are not all of the same kind.57 Kellehear’s solution is to break spirituality into three groups of needs: (1) situational needs, including needs for purpose, hope, meaning and affirmation, mutuality, connectedness, and social presence; (2) moral and biographical needs, including need for peace and reconciliation, reunion with others, prayer, moral and social analysis, forgiveness, and closure; and (3) religious needs, including need for religious reconciliation, divine forgiveness and support, religious rites/sacraments, visits by clergy, religious literature, discussion about God, eschatology, or eternal life and hope. Kellehear’s model, then, is highly functional in relation to palliative care. It allows for individual needs of each patient to emerge within each area; not every patient will need each item in each realm of need. It also allows for patients who are not at all religious and therefore do not experience need in a religious sense, but who still have situational and/or moral/biographical needs to be met in palliative care. “The different aspects of spirituality are not in competition with one another but rather evolving aspects of the human need to transcend, to go beyond the immediacy of suffering and to find meaning in that experience.”58 Out of this framework, one can devise a set of assessments that uncover the specific patient needs, and by understanding the spiri-

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tual needs of patients, the palliative care specialist can set out to meet those needs in the best way possible. Moreover, Walters’s theoretical framework allows for continuing research. These theoretical needs provide a platform from which “to operationalize and test hypotheses or to generate exploratory qualitative studies.”59 A common hypothesis, for example, is that “spiritual pain” or spiritual need can exacerbate physical pain.60 Kellehear believes his model allows for the identification of the various aspects of spiritual care that are “responsible for compounding physical pain and how these may or may not relate to social and psychological issues.”61 Furthermore, Kellehear believes that by using his model, armed with empirical data, we may once and for all be able to determine how or whether spiritual needs are different from social needs or psychological needs.62 A final practical implication of Kellehear’s model is that it allows us to understand who can provide different levels and kinds of spiritual care. Kellehear states that nurses, psychologists, and social workers might be the best persons to provide certain forms of care. For instance, nurses might be best in providing for the needs of the patient with regard to affirmation, connectedness, and social presence. A psychologist might be better suited to assisting with a patient’s reconciliation and reunion with estranged family and friends. A member of the clergy might be the only person who can celebrate the sacraments for the patient.63 Kellehear’s model allows for the optimal social functioning of the palliative care team in affirming each member in its assessment of spiritual needs and in the efficacious and effective meeting of those needs. Kellehear’s model foreshadows my third example: the model of the Improvement in Quality of Spiritual Care Consensus Group, which produced an inclusive and comprehensive document addressing the fifth domain in the NCP Guidelines, that of the spiritual, religious and existential aspects of palliative care.64 Spirituality is the single word that defines both religious and existential aspects of care. In the group’s published report, Christina Puchalski and the co-authors define spirituality as “the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.”65 They accept Hans Jonas’s definition of life as essentially relationship and the concept of the human person as being-in-relationship.

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On this anthropology, “[d]isease is a disturbance in right relationships.” Therefore, “[h]umans are intrinsically spiritual since all persons are in relationship with themselves, others, nature, and the significant or sacred.”66 The writers of the report call for the implementation of spiritual care through research in the following seven areas: spiritual care models, spiritual assessment, spiritual treatment/care plans, interprofessional team, training/certification, personal and professional development, and quality improvement. For my purposes, I focus briefly on their discussion of the first three areas. In the first area, that of spiritual care models, the writers conclude that because an essential component of humanity is deeply based in relationship, and because relationship is spirituality, “spiritual care models should be integral to any compassionate and patient-centered health care system model of care.”67 As such, they conclude that spiritual distress ought to be treated with the same intensity and urgency with which physical pain is treated. Like pain, which oddly has come to be considered a vital sign (the only vital sign that the doctor strives to stamp out),68 “spirituality should be considered a patient vital sign”69 and should be routinely assessed in much the way that blood pressure, heart rate, respiratory rate, body temperature, and pain are assessed. Puchalski and co-authors argue that every palliative care team must have a chaplain, one that has trained in a Clinical Pastoral Education training program and is board-certified.70 A patient’s pastor can be involved at the request of the chaplain. Concerning the second area, that of spiritual assessment, the “[f]ailure to assess spiritual needs may potentially neglect an important patient need; it also fails to consider patients as whole persons.”71 Spiritual screening or triage of patients is a simple way to identify those in need of immediate spiritual care.72 Specialized training will be necessary in order to conduct a full spiritual history on the patient.73 The goals of a spiritual history, according to the report, are as follows: • •

Invite the patient to share spiritual and religious beliefs, and to define what spirituality is for them and their spiritual goals Learn about the patient’s beliefs and values

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Assess for spiritual distress (meaninglessness, hopelessness) as well as for sources of strength (hope, meaning and purpose) Provide an opportunity for compassionate care Empower the patient to find inner resources of healing and acceptance Identify patients’ spiritual and religious beliefs that might affect health-care decision-making Identify spiritual practices that might be helpful in the treatment or care plan Identify patients who need referral to a board-certified chaplain or other equivalently prepared care provider.74

Once a spiritual history has been taken, one may identify spiritual needs or spiritual distress that should be addressed by a more thorough assessment conducted by a board-certified chaplain, who will use a “screening tool” that is “simple and time-efficient.”75 This tool will also allow for the assessment of the success or failure of spiritual treatment plans,76 reinforcing the idea that the chaplain has expert skill in deploying spiritual treatment interventions. This leads to the third area, the application of a spiritual treatment/ care plan. While I am certain that no board-certified chaplain would ever prohibit the visit of a patient’s clergyperson,77 nevertheless, in the report, the board-certified chaplain is the person designated to enlist the patient’s own clergyperson. Moreover, it falls to the clinician to determine how the spiritual plan of care works in conjunction with the overall care plan.78 The doctor remains the captain of the team. As a member of the interprofessional team, “a board-certified chaplain, as the expert in spiritual care, provides the input and guidance as to the diagnosis and treatment plan with respect to spirituality.”79 Treatment plans can include: •

• •

Referral to chaplains, spiritual directors, pastoral counselors, and other spiritual-care professionals including clergy or faith community healers for spiritual counseling. Development of spiritual goals Meaning-oriented therapy

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• • •

Mind-body interventions Rituals, spiritual practices Contemplative interventions80

And, as in all medical treatment plans, “[t]reatment algorithms can be useful adjuncts to determine appropriate intervention.”81 Two more items formulated under spiritual treatment and care plans are of special interest for my purposes because they demonstrate the ever-expanding realm of palliative care, which now reaches beyond the grave: •

•

Spiritual care must extend to bereavement care. Palliative care programs should institute processes to ensure that systematic bereavement support is provided. Referral to bereavement counselors or services should be available as appropriate for loved ones and families after the death of the patient. Structured bereavement assessment tools should be used to identify needs for support and those at greatest risk for complicated grief. Health care professionals should establish procedures for contact with family or loved ones following the death of a patient. This may include sending condolences, attending funerals, holding memorial services, or other rituals to offer support to and connection with the family.82

Once palliative care reaches beyond the grave to the patient’s family, it also becomes its role to hold memorial services and other rituals. At one point in Christian history, the funeral mass was supposed to prepare the soul of the departed for life eternal, but not so in palliative care’s philosophical anthropology and ersatz liturgy. Its purpose is to console the living; for medicine, religion — once again — can only have a social functional role. With the assessment of spiritual care and the deployment of spiritual therapy, religion becomes the handmaiden of medicine. We encounter a total transformation of the idea of hospitality. Whereas the care of the dying, the ill, and the poor was once a handmaiden to the theological virtue of hospitality, now spirituality becomes the professionalized domain of a totalizing medicine. Death is medicine’s dominion.

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t he  G a z e  t h at c l o ak s

The totality of the new “total care,” however, in reaching beyond the grave, cloaks and indeed demeans the very thing that palliative care and hospice care are designed to address. Researchers at Aachen University and the University of Cologne, in a systematic review of German and English medical literature that contained definitions for palliative care and palliative medicine, found twenty-six articles in the German literature and thirty-seven articles in the English literature that defined palliative care.83 The definitions were diverse: some were functional, some structural, some directed at the target care group; some were task-related and others more philosophical or theoretical. However, the most interesting finding of this survey was that the words death and dying, Tod and sterben, were rarely present in the definitions or the expansions of definitions. In fact, the words “death” and “dying” ranked only twentythird and sixteenth in frequency of use in the English definitions, and “Tod” and “sterben” ranked seventeenth and eighteenth in frequency of use in the German definitions. As palliative care expands its dominion and the depth and breadth of its knowledge, even here, death and dying are hidden.84 This conclusion is in part similar to that of Fiona Randall and R. S. Downie in their book The Philosophy of Palliative Care.85 Randall and Downie criticize palliative care by showing several problems: (1) with its definition; (2) with its notions of quality of life that animate those definitions; (3) with definitions and understandings of concepts such as autonomy and dignity;86 and (4) with attempts to assess quality of life and the various domains of quality of life. As with my analysis, Randall and Downie are puzzled by the emphasis on familial treatment and on the constant drive to assess and treat spiritual pain, in whatever expert way it is defined. They are quite willing for patients, after their autonomous decision making has been promoted, to seek spiritual guidance from whomever they like; however, this is not part of the care traditionally delivered by medical doctors. Randall and Downie counsel us to abandon the goal of controlling the patient’s psychological, social, and spiritual problems, and to allow professions such as psychology and social work to enter into professional-patient relationships, but not under the control of the medical doctor.

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Their answer to the problem, however, is rather odd. They criticize medicine for an excessive adherence to the Hippocratic tradition; yet all the while, they emphasize the doctor-patient relationship as central and argue that the traditional medical ethical view is sufficient.87 They note that Hippocratic medicine — to which, I have claimed, contemporary medicine fabricates a historical relationship — has emphasized cure and control of disease, but they understand Hippocratic medicine, as applied to palliative care, as focused on “technique with the outward trappings of objectivity.”88 Instead, Randall and Downie are arguing for a kind of “hands off ” palliative care, where the usual professional-patient, as opposed to professional-family, relationship is operative. They emphasize “ordinary human interaction, sensitive explanations and advice based on professional knowledge and experience, and friendly professional interest.”89 Claiming that they are following a different Greek tradition of medicine, one that predates that of Hippocrates, Randall and Downie call their model of care the Asclepian model of holistic care.90 Asclepian medicine, they write, relied heavily on harmless snakes that would heal the patient with their serpentine gaze. They argue that the supplicants at an Asclepian temple were not there for a cure but rather for Asclepian miracles, which were worked to assist supplicants in “emotional acceptance and spiritual renewal.”91 Asclepian attention — the healer’s hypnotic gaze — is opposed to Hippocratic observation.92 Randall and Downie do not offer sources for their understanding of the cult of Asclepius;93 their description of the Asclepian temple seems to be an attempt to add legitimacy to their critique of totalizing care,94 not unlike the periodic appeals to the Hippocratic Oath when the ideals of medicine come under fire.95 In any case, however, our analyses of palliative care are in agreement; they, too, find that the enterprise of palliative care results in the strict management of death and in the control and domination of the patient. I have claimed that palliative care cloaks the dying in assessments and interventions created by expert discourses in biology, psychology, sociology, and spirituality. These discourses are the nominal discourses of experts, whose expertise defines, deploys, maintains, refines, and corrects their discourses according to the needs of the mécanique sociale, under the control of palliative care.

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These discourses of expert care create the very thing that they purport only to promote, namely, a “good death.” A good death is one that is managed in all its facets by those whose expertise defines a good death. Holistic and comprehensive care, achieved by virtue of the deployment of expertise in all facets of human life — biological, psychological, social, spiritual, and reaching beyond the grave into the lives of the family — becomes totalizing care, indeed, totalitarian care. We find, then, at the final frontier of human life — that is to say, at the death of a human life — the fulfillment of what Foucault means by biopolitics. Total care is not only oppressive; it also creates new forms of living and dying, new ways of living and dying well. It constructs what is possible for the patient in her living and dying. It does so by biologically controlling pain, by efficiently managing suffering and the experience of finitude, and by creating discourses of psychological, social, and spiritual mastery. These discourses, as I have shown, require establishing the norm, the rule, the mean, l’homme moyen; they require the “average death,” against which the individual can be judged and controlled. Thus, palliative care actively drives itself forward to ensure that its wares — its assessments, interventions, and discourses — are political rights. Once again, we discover the centrality of social function when it comes to the care of the dying. Society must be brought round to these needs of the dying, namely, the needs described by the assessments of a scientific palliative care. This explains Timothy Quill’s statement that in fact, the activity and activism of Dr. Jack Kevorkian were necessary, socially speaking, to bring society around to recognizing the plight and suffering of the dying.96 Once society knows that the dying are suffering, society will want better palliative care to control dying, either through effective management of death or in death-inducing action. For Quill — touted by Constance Putnam as more like a Marcus Welby than a Jack Kevorkian97— care at the end of life is part of a continuum designed to ease the patient into his death. Many in the palliative care and hospice communities understand palliative care to be an important corrective to the suffering of patients at the hand of a cold and overly technologized medicine, from ICU care to chemotherapy to repeated hospitalization. As Putnam observes, many in the palliative care and hospice communities also believe that palliative care is the corrective to the drive for active euthanasia and medical assistance in death.

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However, the choice, according to Quill and Putnam, is not between hemlock or hospice; it is a choice between comprehensive care or inadequate care at the end of life. Heroic compassion — the name that Putnam gives for compassion at the end of life — requires hemlock and hospice if it is to be a truly comprehensive and total care. A hospice run by principles of palliative care will provide the expertise to psychologically, socially, and spiritually cause comfort in the dying, and should these fail, one always has hemlock to cause death. Death becomes the means to cause comfort. Under a metaphysics of efficient causation, it is inevitable that palliative care will become, under the governance of the state, the place where death is caused, as the final effect in an immanent series of cause and effect. As I noted in chapter 4, the continuum of care described by Quill and others and by Miller and Truog and Brock no longer distinguishes between killing and allowing to die.98 It follows — from their arguments for the nondistinction between killing and allowing to die — that palliative care causes death. As Laurence Tribe has said about Quill, “He is a good representative of what ought to happen, because death is not his subspecialty but an integrated part of his practice. He treats someone as a whole person, not an anticipatory corpse.”99 Tribe’s statement about Quill seems apropos of all of medicine’s care offered to the dying; death is an integrated part of medical care. Yet, contrary to Tribe’s statement about Quill, I have claimed that medicine cannot help but see the body as an anticipatory corpse, precisely because its metaphysics is one that can recognize only cause and effect. It can recognize only nonliving matter playing itself out toward the final effect — the terminus — of all bodies; that is to say, the nonliving body plays itself out toward death.

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Recapitulation

Medicine’s epistemology and its metaphysics, I have argued, shape the way we think of and care for the dying. Whether medicine’s epistemology structures its metaphysics or its metaphysics informs its epistemology is irrelevant. Metaphysics and epistemology often go hand in hand. I have traced the way in which each affects the care of the dying, from ICU care to palliative care. The dead body became the epistemologically normative body, and thus medicine participated (and still participates) in the killing of numerous living beings in order to know how to care for the living. Can this violence merely be dissolved in a moral calculus that justifies some good effect? Do medicine’s violences not call medical practices, as unqualified goods, into question? Medicine’s metaphysics of efficient causation focused on relationships of matter in motion. For Aristotle, motion was integral to productive activity, practical activity, and theoretical activity. Movement could be thought of analogically in terms of aesthetics, ethics, or metaphysics. But Newtonian physics turned to a philosophy of forces, where the prior cause forces the next effect or series of effects into being; it became the model for medicine, giving birth to a physiology of function, not purpose. There is no formal cause, merely brute force; there is no final cause, merely the post hoc addition of a political or individual will. For •    279

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medicine proper, a telos is replaced with a terminus, and the corpse is always anticipated. At the end of life, if the only thing keeping the body alive is the prior decision to intervene in a failing mechanism, there is no longer any sense of the integrity of the living body. Medicine gave birth to the life-at-all-costs mentality; as long as matter can be sustained in motion, it must be forced to stay in motion, if only by machines that administer fluid and nutrition or keep blood oxygenated and circulating. As in animal life, so in social life; the mécanique celeste that informed physiology gave birth to mécanique sociale; or perhaps better, the mécanique sociale was born of the same parentage as mechanical physiology. The idea that life was the business of government came to fruition in public health medicine, in the rise of statistical psychology and sociology, and in the eugenics movement, which is latent in the contemporary genetics of medicine.1 Political arithmetic in medicine is alive and well, health and healing are not the concern of families but of polis and societas, and the power of the state orders our notions of sovereignty and decision, for the good of the body politic. At each stage of medicine’s development, its repressed core returns to haunt the lives of those who are subjected to medicine’s techniques of control and mastery. Where purposes are marginalized, there can be only the violence of the immediate prior cause, the impetus that forces the next effect. Rather than rethinking its metaphysics, medicine reaffirms it simply by shifting from exalting the doctor’s control to exalting the patient’s control. Medicine opened a space in which the sovereign patient could embrace death in rejecting the technologies of the ICU. In emphasizing the right of sovereign decision, one’s life and death becomes one’s own-most decision. One either embraces death in rejecting technology or embraces a life worse than death in embracing technology and forcing life on matter that cannot sustain it of itself. Because there is no robust conception of the formal cause of the living body, there is no real integrity to the life of the body, except insofar as it is forced in sovereign decision. On this logic, a death is a good death only if it is chosen. The logic of sovereign decision, therefore, extends to acts that cause death. On a metaphysics of efficient causation, the sovereign decision is the efficient cause ordered to its terminus, death. The act of rejecting technology is a choice between death and a meaningless life in the ICU, and similarly,

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the act of embracing doctor-assisted death is couched as a choice between death and a meaningless life of pain. Both are considered decisions for the same kind of action: a decision maker is acting toward his own death. Yet the inverse is also true; the decision to embrace technological life in the ICU and the decision to embrace a natural death, both of which may be drawn out for weeks, are considered the same sort of act because, again, both choices are made by the sovereign decision maker and both end in death after a drawn-out, meaningless life. With our focus on efficient causation, we have constructed a scenario where the choice is between an efficient death and a meaningless life, still ending in death. Sovereign decision is the prior cause in both refusing technology and in suicide; death is the final effect in both refusing technology and in suicide. The doctor, compelled to assist the sovereign patient, cannot claim a conscientious objection because final causes are absent or barred from her thinking and doing. In terms of prior cause, it is irrelevant whether the sovereign removes something causing life or injects something causing death, because both actions end in the same effect and have the same origin. Jack Kevorkian’s death machine as an efficient means of killing is merely the logical extension of this kind of metaphysics. Moreover, since sovereignty is paramount, the polis creates social and legal conditions that both determine that the sovereign decision is the patient’s own-most decision and ensure that her death is brought about as effectively and efficiently as possible. The social apparatus of the law creates the conditions for medicine and the doctor to ensure a well-ordered and closely observed death, a good death. The legal apparatus that legitimates the death of the sovereign also affirms for her that this decision really is her own-most. It is what she most desires, for the doctors have repeatedly affirmed that it is her decision. Yet the social apparatus of the law also betrays the cold ground of death in that, now, life is something that must be chosen, over and over again. Once medically assisted death becomes an option in medicine, the option changes the nature of all decisions in medicine. Soon one will have to justify why, in the face of impending mortality, one has not yet chosen death, or better, why one has not yet chosen to donate one’s organs to those whose lives could be more productive to the body politic. After all, all

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deaths are now medically assisted by virtue of the fact that technology must be rejected in order for one to die. By giving one’s organs away, would this not allow a telos, a purpose, even if only an immanent telos, to one’s living and dying? The logic of the machine of the body cannot resist the logic of the machine of society; one must find more replacement parts for those who can remain productive for the body politic. And if one chooses death, whether by medical assistance or by removing the technologies of life, should one not choose life at the same time, by donating life to the dying? Should society not create efficient mechanisms to ensure that life remains, on the surface, the goal of all of medicine? That is exactly what has happened in recent drives to increase the number of available organs. Policy makers deploy the principles of business management, set organ procurement goals, and put into play various interventions to achieve those goals. Surely everyone wants to be a donor; surely everyone can find meaning and purpose in donating, certainly more meaning and purpose than if we let the organs die in the coffin of the body. But in the deployment of these initiatives to increase donation, the absurdities of donation become increasingly stark. Irreversible cardiac death is not irreversible under the guidelines of Donation after Cardiac Death, because the heart is started again, in the body of another person. Dead donors are living bodies, living cadavers. Those who are alive but whose bodies are dying are parasitic upon the living bodies of the dead. The patient declared legally dead could even be cremated, legally speaking, while his heart was still beating. Given that the capacity to make a sovereign decision is what legitimates the power of the sovereign to choose life or death, those who lack the capacity are placed in a politically thin space. For social conservatives, bare life is deserving of the good life; for social liberals, the possibility of the good life is the condition for deserving bare life. The body in this political space has bare life, but the good life is already dead for the patient. As such, the bodies of PVS patients are at risk of becoming objects of research and organ procurement. The body is, after all, a machine, and the PVS patient lacks the sovereign will to do anything with her body; should some good for the body politic not be sought instead of keeping her alive? Why should that body not be abandoned to the interests of the polis, rather than to the ravages of death?

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Palliative medicine offers itself as the kinder and gentler response to the dying, by emphasizing care over sovereignty. It appears, at first, that in palliative care the caregivers offer themselves as companions to the dying. But for the sake of appearing scientific, as we have seen, palliative medicine deploys tools of assessment to refine not only its care of the patient and family but also to justify its own functioning. It becomes a set of expert discourses intended to prove its own value in the care of the dying. It cloaks death in its own definitions and assessments and interventions. It attempts to subordinate the other subdisciplines and expert discourses in psychology, sociology, social work, epidemiology, economics, and spiritual care. In short, palliative care is biopsychosociospiritual medicine, which extends and penetrates ever more deeply into the patient’s life and the life of her family. The biopsychosociospiritual model and palliative care depend on the assessment tools of the respective experts, which are devised to promote the efficiency and effectiveness of the model.2 These instruments of assessment extend the gaze of the expert into the crevices of the patient’s psyche, his social relations, and his religious life. The gaze even extends beyond the grave into the space left empty by his death. If there is no hope for a final cause in medicine, then every form of transcendence is a transgression. For the sake of compassion, medicine thinks it has to offer care by doing something. It thinks that it must deploy assessments and interventions. Medicine cannot not do something; it cannot simply do what priests and rabbis or friends and family do, because in terms of a metaphysics of efficient causation, priests, rabbis, friends, and family cannot be shown to have done something. As a science, palliative medicine must measure and show that it, too, is doing something and manipulating something. And by showing its effects, palliative medicine can claim the mantle of science and can claim payment for what it does. In order to be accepted in the medical school, palliative medicine must exert scientific prowess. It is hardly surprising that palliative medicine puts the patient, family, and the system of care for that patient under constant surveillance; by doing so, it can prove that it is doing something, controlling something, like the rest of scientific medicine. It is not surprising that palliative medicine has found that the patient’s family is often in need of a respite; palliative care therefore creates the means for the family

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to take time away from the patient.3 Likewise, it is not surprising that palliative medicine has found that family dynamics might lead to distress for the patient,4 and therefore the patient might need some respite from the family.5 It has shown that religion might also cause the patient distress, indeed, that the patient’s religious beliefs may even get in the way of “total care.”6 What is most interesting, but not at all surprising, is that no assessment has been created in which researchers have shown that what the patient and family most need is a respite from the healthcare professionals. A good death can only be known as good if it can be assessed by those who know death, who have measured it, and who have seen it deep within the dead body — and within the living body. Medicine cannot let the dying be.

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chapter

10

Anticipating Life

I want to believe that no doctor, nurse, psychologist, social worker, or chaplain enters the field of health care to exercise mastery over other people, to become part of a totalizing biopolitical regime, or to totalize the bodies of the dying. On their application forms to colleges and other schools, prospective students state that they are choosing the field of medicine, or nursing, or psychology, or social work, or the ministry to help people. Their desire to help is born out of an authentic response to suffering and death. They often include personal narratives of caring for their loved ones, of being with someone who is dying, or of experiencing the pain and suffering of another. Some such experience is usually articulated as the student’s motivation. My point up to now is that the social apparatus of medicine molds and shapes, indeed, subjects students to the normative stance of a biopolitical regime, in which the health of the body politic becomes the object of medicine’s inquiry and its domain of management. Death’s dominion becomes medicine’s dominion. My reader may have tired of critique by now; yet I hesitate to be constructive. My hesitation is not because constructive work is harder than deconstruction, although that is surely true. Diagnosis is easy; therapy is difficult. To “prescribe” solutions, as Eric Krakauer suggests,1 is to repeat the errors of the dominant metaphysics of medicine: to deploy other regimes as correctives to the regimes that currently ail •    285

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medicine. In other words, the problem is not merely at the interface of system and patient but built into the very way that medicine is currently structured. If the therapy is directed only at this interface, I am as likely to harm as to help. I am fearful, as a practicing physician, of what I might deploy and of what I might compel doctors, and nurses, and psychologists, and social workers, and chaplains to do to patients in the name of doing something good for the dying. Any new prescription, I fear, would deploy new “standards of care” to which I might subject the dying. The remedy cannot be prescribed in the way that George Engel or Elisabeth Kübler-Ross did, as a sort of booster-shot against what ails medicine.2 Nor can it be the mere re-narration or the demystification of dying, as advocated in Sherwin Nuland’s How We Die; nor, as I discuss in this chapter, the re-investing of meaning as described by Eric Cassell or Rita Charon.3 I have argued instead for a different kind of diagnosis, one that does not merely accept the good things of medicine as unqualifiedly good. I can only begin to sketch and explore the places and traditions from which new answers to medicine’s besetting questions might emerge — for we must begin to talk about places and traditions, as opposed to space and time or even political space and historical time. Places are particular, and traditions are alive. To those for whom my diagnosis of the besetting sins of medicine has been unpalatable, it is likely that my therapy — which is no therapy at all — will be unappealing as well. I can only gesture toward a different place, constituted differently from political space; I can only hint at different traditions, thriving even in our time, where healing bodies and even the dying ones might find respite. Beatrice Han, as discussed earlier, observes that Foucault tried to steer a course between the historical and the transcendental in order to describe, or rather to carve out, a place for human freedom. She claims that Foucault fails because he does not sufficiently understand phenomenology. Han seems to think that a better phenomenology — one, she believes, that must avoid the “theological turn”4— might offer a way forward that Foucault could not find.5 Thus, in what follows, I shall begin in phenomenology. Our greatest strengths are often our greatest weaknesses. I begin where most doctors begin, in desire — a desire to touch the lives of

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those suffering. Or is it a desire to be touched by something that transcends the self? In this sense, doctors, nurses, social workers, psychologists, and chaplains are no different than those who created the first hospitum and hospices for the suffering. We need to pause and to engage in the practice of thinking about the beginning of compassion, response, and responsibility. Medicine’s hope might exist in desire for the other.

t he  s u b j e ct  an d  ob j e c t of  Medi ci ne

Martin Heidegger’s distinction between the being of things ready-tohand (Zuhandenheit) in the world and the being of things presentat-hand (Vorhandenheit)6 seems particularly important when talking of subjects and objects in medicine. What medicine apparently fails to understand is exactly what Heidegger takes as self-evident, namely, that “subject and object are not the same as Da-sein and world.”7 By Dasein, Heidegger meant the particular human being as she experiences the world, literally (as he calls it) being-there-in-the-world. Things are never just bald facts for Dasein, but are always already there as part of meaningful relationships among other things. Thus, Dasein is never mere subject, and things are never mere objects. Things become conspicuous to Dasein as mere objects — objectively present — when they have become unhandy, that is, when they cannot operate in their meaning structure, when they are broken.8 They light up in a way that highlights not only the tool that has become unhandy, but the entire web of handy relations to which the tool belonged. Kay Toombs, in her book The Meaning of Illness, describes illness in a similar way.9 We do not so much experience our body as a thing present to us, that is, as an object for reflection; rather, we pre-reflectively reach for the cup of coffee or the newspaper, in order to drink or to read. And in drinking or reading, we are not so much aware of our mouth or our eyes as we are aware of the warm, bitter liquid, or the significance of the author’s words, or the need of the caffeine in the warm, pleasant liquid to stimulate the mind to be a better reader or to write a book. Toombs, following Jean-Paul Sartre and Maurice Merlau-Ponty, speaks not of handiness — Heidegger’s Zuhandenheit— but of the embodiment

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of intentions; intentionality is always already embodied.10 As Toombs states, the body is the locus of intention and the schema of orientation in the world.11 The body is the means of engaging the world, not as some disembodied subject but as a primordial relation to the world, and for organizing one’s projects. In this sense, the body is that which intends, and thus we do not possess a body so much as we are bodies engaged in practical projects.12 All projects have histories — a given past set of experiences — which are instantiated in the present moment, moving toward some given telos. The body is literally molded and shaped by its experiences. Joel Shuman in his book The Body of Compassion describes his grandfather, whose embodiment gave rise to Shuman’s own embodied projects, as follows: He was one of my first real heroes, a tall man with strong, able hands, a man whose whole life seemed to be deeply inscribed on the contours of his body. Forever clad in khaki work clothes and an old cap pushed back on his balding head, he always had the appearance of being ready to work. He was a farmer and a woodsman and a master carpenter who taught me to hunt and fish and most importantly to work, to be with wild and domestic animals, and to make useful and sometimes beautiful things with my hands; to this day I cannot pick up a hammer or a plane or smell freshly sawed lumber without thinking of him.13 The lived and living experiences of his life had become part of the sinews of Shuman’s grandfather’s body. His body was bent and shaped by those experiences; it was inseparable from them. Similarly, Shuman’s love and admiration for his grandfather literally lodged themselves into Shuman’s very senses, into his own way of being (for example, his behavior with wild and domestic animals), and into his sense of “useful and beautiful things.”14 What is true of Shuman and Shuman’s grandfather is true for the clinician. The master clinician, by virtue of her embodied learning, which is a part of the history of her own body, is able to tap out the liver margin and to discern the resounding tonal differences in the percussed notes, allowing her to distinguish between liver and lung and bowel;

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she learns to know by the texture, firmness, and softness of that which she seeks, namely, the liver. The moment of diagnostic insight, when it all comes together, is unforgettable to her, when she touches, taps, listens, even smells, and then knows, without literally seeing and in a nonscientific way, what must lurk beneath the surface. Her know-how is itself embodied. The clinician embodies these capacities and potencies; they are embodied in the clinician. They are directed toward the good of finding the liver and also the good of a future healing. The being of this physician’s know-how is embodied. We are bodies in that the body is bound up with our intentions and capacities and potencies, with particular histories and telei; that is also to say, our projects and our purposes are embodied, in the same way that Shuman’s grandfather embodied what he had lived on a mountain in West Virginia. Formal and final causes are embodied, even as that embodiment is shaped by meaning and significance outside the body and directed to purposes outside the body. Toombs — herself a sufferer from multiple sclerosis — admirably unpacks for her readers the way in which the diseased body leads to one’s alienation from the hand that does not move or the eyes that do not see, and makes them mere objects even for oneself. Thus, the body, in its inability to carry out projects, is perceived as a tool for one’s projects, because in the unhandiness of diseased hand or eyes, the objectivity of the hand or eye emerges. This kind of experience of alienation from one’s body, of course, can occur; but it does not refute my claim that formal, final, material, and efficient causes are deeply bound together in the material of the body. And hence, my use of Heidegger’s example of tools and handiness/unhandiness is already misplaced, because the body is not a tool. Just as Shuman was born into the history of his grandfather’s embodiment, the body is itself already born into ways of being and is already engaged in projects that have histories, histories much longer than the bodies born into them. These bodies, which are in relationship with others in contexts and are directed at some telos, already carry concretions of meanings. Thus, the particularity of the body lies not merely in its materiality but in a materiality that is already shaped and molded by particular histories and forms of being into which the body is thrown, with particular capacities and potencies, directed at particular projects, for particular purposes. These histories and particularities of place are

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folded into the now and here of the body. Formal causation and final causation are embodied in particular ways. Thus, in medicine, the bracketing of formal and final causation and the elevation of material and efficient causation (that is, functionality) necessarily does violence to the particularity of embodied capacities, potencies, projects, and purposes of bodies. In this sense, medicine does violence to the being of particular bodies, not only in its focus on the prior causes of matter forced to act in locomotive action, but in setting aside meaning and purpose and in carrying out the generalization necessary for all modes of scientific knowing. When it fails, the body appears to be a broken tool, despite the fact that the body carries in its sinews, its history, and its capacities and potencies the directedness toward some particular project for some purpose. Hands and eyes come into relief as unhandy, precisely because of the pre-reflective handiness of the body, or, more accurately, because of the embodied histories, capacities, potencies, projects, and purposes. Therefore, the loss of the function of the eye or hand is more than the loss of the function proper to the eye or hand; it is at the same time the loss of histories, of capacities and potencies, and of projects and purposes that have been habituated by the lived experience of that body — a body that molds itself in relation to things and people. These histories, capacities, and so forth are gathered in the body. They are literally insinuated into the body’s members, (re)membered not only in the body’s limbs or consciousness but in the organism as a whole. The body is conscious of the “out there”; awareness is “ecstatic,” that is, standing outside the body in its senses and sense experience; it is ecstatically and pre-reflectively with things and others and purposes; it is out there imaginatively in its past and imaginatively in its future, right now, here in its present. Much of the intention of the body escapes consciousness, yet the body is the sine qua non of human being; and it is particularly “storied.” These histories, capacities, potencies, projects, and purposes are typically preconscious, but are recalled to consciousness when we lose certain bodily abilities, bringing into stark relief what is lost.15 Thus, a doctor’s loss of the ability to feel with her hand or to move her hand is also, at the same time, the loss of her projects and purposes in healing. The illness of Shuman’s grandfather slowed him in his ability to carry out the work of the farm, but more importantly, it threatened

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his being as a farmer and mountain man. Toombs’s daily life became a difficult and overwhelming project as she moved through an airport or the halls of her university. Our telei are embodied, but they reach outside the body to embody projects and purposes in the world, whether these are large, long-range projects or matters of daily living. In a way then, we do not attend to the body, but our projects are embodied; in other words, the body is the given of projects and purposes, until it can no longer participate in these projects and purposes. Heidegger observes, furthermore, that even the emergence of the objective presence of the tool — or, in our case, the hand or eye that is now perceived as a mere object/tool in its dysfunction — is still tied up with a web of relations,16 not merely in relation to its function but also in relation to embodied experiences, capacities, potencies, projects, and purposes. This hand has a particular history of a particular body directed at various projects to achieve other, nonbodily goods. Our bodies do not readily become objects for us until we lose the ability to do what it is that we hope to do, that is, when the project and purposes are no longer possible. The world becomes strange when even the smallest of projects — drinking coffee or reading a work of philosophy — becomes impossible. When the body becomes conspicuous and therefore becomes perceived as an object, it distresses the one whose project has, in a manner of speaking, become disembodied, or, put differently, whose project is dying. The project is only possible as embodied. In addition, when the body becomes conspicuous, we experience profound disorientation. Time is perceived differently, in that the minutes turn to hours when there is pain, or when the tying of one’s shoes requires 45 minutes instead of 45 seconds.17 A sandwich sitting next to the bed becomes as distant as a café along the Tiber River.18 In the dying body, one’s history can appear differently, in that parts of that history appear frivolous. Time spent watching television or concerning oneself with the beauty of one’s body becomes wasted time, which could have been spent writing a book, playing with one’s children, or dancing in the rain. As the body fails, one’s future is called into question, in that what a person has been driven to do — and this drive is a part of the stream of her history — becomes impossible. Even the natural goodness of being alive — a different kind of project with a different kind of telos — is mourned as lost. Therefore spatial and temporal disorientation occur,

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or rather, a distortion of place and of past, present, and future. It is not a disorientation of abstract space and time, at least not at first; instead, it is a disorientation of a particular embodiment, formed in particular places and with historical directedness, such that both place and history are essential to the being of this particular body. For our purposes, then, it is more important to talk about living and dying than about life and death, for it is the body that is dying and, along with it, its history, capacities, potencies, projects, and purposes; these are being lost. In terms of the embodied living of a particular person, the body is indistinguishable from these features, and the person’s projects only become distinguishable and separated from the body insofar as that body is failing or dying. Finally, a person’s embodied projects are themselves ordered according to what has been given in her embodied history. Telei are ordered such that bodies themselves are the good without which nothing, including any particular telos that transcends the body, is possible.19 At the time of a grave illness, one tragically recognizes that one’s projects now have a lesser priority; one reorders priorities such that life, which had been an intermediary good for the possibility of the projects, now becomes the central priority. Certainly, the experience of being alive itself is a good, but it is a good that is ordered and prioritized to other goods. Now, for the one whose life is threatened, even life itself appears as object. For when mere functional life becomes a priority, one is further alienated, not only from the body but also from the entire history and purpose of her embodied projects. One is alienated from life itself, because embodied life has always been ordered and molded by its particular history for its particular projects. If health and living had been directed to things perceived as lesser goods, then one mourns not only what is lost for the future but also one’s particularly embodied past, which molded one’s desires for what now appear as lesser goods. Thus, in the failing of function in the body, other things are dying, because one’s projects have become the function of the body, which at the same time is losing its capacities and potencies, its past, present, and future, and its projects and purposes. Finally, when one becomes gravely ill, one may not at first know what is being lost, or may not even have time to ponder what the illness means for one’s history, purposes, and projects. Worse still, when

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one’s consciousness is distorted by the illness, the whole world seems uncanny, not merely the body or the body’s projects and purposes, even if only in the moment prior to unconsciousness. In losing one’s consciousness, our being-in-the-world is also being lost. In dying, the body is alienated from the sweetness of being-in-the-world. Such is the finitude of human being, which is always embodied. In health, then, we forget the embodied gift that health is. In disease and illness, we remember the gift that health was. In disease and illness, we hope for what health might be able to achieve in embodied life. Moreover, the health that is forgotten in health and remembered and hoped for in disease is particularly embodied, for health — wholeness — is always tied to particularly inhabited projects and purposes and ways of being-in-the-world. So, at one level, in disease one becomes disembodied, alienated from being embodied; or perhaps better, one becomes differently embodied, for even the distress of the perceived disembodied state — the alienation from the body and life — is embodied. One’s purposes and projects are literally trapped in the diseased body. Embodied health, which had been gift, and as given is taken for granted and forgotten, comes most fully into relief when it is slipping away. Or rather, for most of us and much of the time, it is only made present when it is slipping away. For those differently embodied, those whom we often call disabled, their bodies experience differently and are differently oriented, differently storied, differently experienced; and the world is differently experienced, differently ordered. Thus, it is possible to say that because embodied capacities are different, the ones we call disabled are actually whole. If their bodies have lost previous capacities, then they might experience such loss as a loss of their body. But if their embodied projects and purposes have shifted according to the newly embodied potency, they may experience no loss at all. And it is entirely possible that if the ones whom we call disabled never had a particular capacity, they do not experience a loss at all. They will have known no other way of being embodied in the world than the way in which they are embodied in the world.20 There are, then, as many ways of being healthy and whole as there are ways of being embodied. Health is the condition of the integrated whole: the world with a body with particular histories, projects, and so

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forth. In this sense, our projects and purposes are alive in potency, not merely in the function of the hand or the eye. Formal and final causation are particularly embodied, and they participate in being alive in a human being. Human life cannot be reduced to functionality, to material and efficient causation, without doing violence to the other features of being-in-the-world. In illness, what is being lost, then, is not mere function but orientations, capacities, potencies, histories, projects, and purposes. In illness, what is being lost is not merely the ability to cause materially and efficiently, but also the ability to be caused formally — the ways in which one has been caused formally — and to cause finally. In failing bodies, then, there is always suffering, an undergoing of what is being lost. Thus, when one’s body becomes an object for oneself and one’s projects and purposes become disembodied, one begins to seek out doctors, who objectify the body in a manner very different from the way in which the hand or eye has become an object to the one whose body is failing.21 Both doctor and patient hope that there will be an easy fix, a way to restore function; this is the calling of medicine. When function is restored, it matters little to the patient that her doctor has not understood her particularly embodied histories, projects, or purposes. The patient is simply thankful that the gift of health has returned. If the illness is more serious, as with the illness described by Art Frank in his book At the Will of the Body,22 then one’s embodied history has been changed, or one’s projects might have to shift, or the very purpose of one’s being might alter, and in retrospect it might even be seen as a good. This is not to claim that experiencing such losses is ever good, but to claim that, as embodied, there will be change, and that such loss is a “dangerous opportunity.”23 Because more than function is embodied, when medicine fails in restoring function, medicine can be experienced as cold. This occurs not because medicine failed or because it failed in a mechanical way, but because medicine does not know how to properly mourn the loss of capacities, potencies, histories, projects, and purposes. Mourning is always particular. The coldness of medicine is because in not restoring function, or even in restoring it, medicine has not understood that something other than function is being lost or returned. This something is embodied ontologically and is deeper than functionality. Thus, in the

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care of the dying, whether by ICU care or palliative care, medicine perpetually comes up short, for it cannot restore function and it cannot understand the loss of embodied capacities, potencies, histories, projects, and purposes. Here, then, the doctor risks more danger for her patient and heightens for the patient what is being lost.

s uf f e r i n g  a n d L os s  o f e M bo died h oLi sM

Eric Cassell describes the distress that emerges in loss of bodily function as the loss of personal integrity. This loss of personal integrity he calls suffering.24 In contrast to my claim that suffering is the embodied distress at the loss of the wholeness of being-in-the-world, Cassell, who castigates the West for its mind/body dualism,25 claims in an oddly dualistic move that “bodies do not suffer, persons suffer.”26 Although he might be horrified at such a charge, a subtle dualism also lurks in his sentiment that “[e]very person has a body.”27 For Cassell, there are many ways in which persons can suffer, based on his topology of personhood. Persons have pasts, they have life experience as the origin of personal meaning, and they have families and cultural backgrounds. A person plays roles and has relationships with others. A person has a relationship with himself, and he is a political being. Persons do things and are often unaware of what happens and why it happens to them. They have behaviors, bodies, and secret lives. They have futures, and they have a transcendent dimension.28 Losses in any one of these “parts” of personhood result in suffering, according to Cassell. I do not disagree with Cassell at this level. Cassell’s scientific understanding of the world may explain why he embraces a subtle epistemological dualism, despite an explicit rejection of dualism. According to him, If the mind-body dichotomy underlies the assigning of the body to medicine, and person is not in that category, then the only remaining place for person is in the category of mind. Where the mind is problematic (not identifiable in objective terms), its very reality diminishes for science, and so too does that of person. The concept of person then becomes identified with mind, the spiritual, and the

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subjective for lack of an alternative place in medicine’s objective categories. Therefore, as long as the mind-body dichotomy is accepted, suffering is either subjective and thus not truly “real”— not within medicine’s domain — or identified exclusively with bodily pain.29 By identifying suffering with bodily pain, Cassel observes, one depersonalizes the patient. A division of the human condition into two categories, the body and everything that is not the body, “has given medicine too narrow a notion of its calling.”30 Cassell’s remedy is for us to recognize that the person is not the body. But if medicine’s calling is too narrow in its scientific treatment of the body, then how should medicine respond to suffering? Cassell’s answer is by not treating the person like a body but finding other ways to answer suffering, carefully attuned to the patient’s psychological, social, and even spiritual ways of making sense. The physician’s calling is to treat the patient biopsychosociospiritually— to treat scientifically the psyche, the social, and the spiritual. Yet herein lies the problem. As I argued in chapter 8, when the human sciences try to get at things that do not exist as material objects, they conceptualize, operationalize, test, and redefine in an epistemological circuit; the “thing,” or in Cassell’s words, the “part,” has to be defined, operationalized, measured, and assessed in order to be addressed. Thus, the “thing” called the mind or the spirit becomes a nominal object that is the sum of its measures — a “thing” that is narratively or numerically described. In short, medicine’s mode of response to suffering is another scientific response: define the nonobjective “thing” as a nominal object, then operationalize the definition, then continue refinement of the definition by testing until the definition is unassailable. It seems that, on Cassell’s account, if suffering is to be medicine’s domain, medicine will first divide the suffering body from its “spiritual” or nonobjective parts (as Cassell calls them), and further separate the social from the psychological and the spiritual dimensions. Then it seems that this divided body and psyche is reintegrated, post hoc. Cassell also suggests another kind of therapy. The melioration of suffering can come about by “[a]ssigning meaning to the injurious condition,” which can often reduce or even resolve “the suffering associated with it (the loss).”31 A person, who is distinct from her body, in that

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she has a body,32 can assign meaning to the loss, including loss of function. Thus, she becomes a narrative being, and in re-narrating her story, she reconstitutes her personhood. As Rita Charon holds, “[s]ickness and healing are, in part, narrative acts.”33 We should narrate the suffering into meaning, as eloquently done by Sherwin Nuland, and somehow we are to believe that this investment of meaning prevents biologism, or biological reduction, by adding something to the mechanism of the body. There are two problems here. The first is naming the real, scientific part of a human being — the material part, the biology — as his or her real part, and naming the rest of it as the personal part (which is itself, according to Cassell, made up of parts, here understood as metaphorical parts). On this construal, the assigning of meaning to failing matter is little more than a nonmaterial overlay, mapped onto functioning bodies. The narrative becomes a fiction that is told to cover over (or to dangle from) the real mechanism. The narrative is a shroud concealing the reality of the functional materiality. This is not an uncommon position; it is also held by some neuro-philosophers, such as Paul Churchland.34 As far as the scientific/mechanical (neuro-biological) account goes, the narrative meaning assigned to the losses of the body deals with the fictions, or rather lies, that we tell ourselves; or, painting it in a more positive light, the narrative meaning deals with the mythical truths that we tell ourselves about the miserable condition of the real mechanism doomed to play itself out in death. I have claimed that Nuland’s account of How We Die is just such an eloquent overlay, an eloquent re-narration of the failing body35 and the “facts and objects”36 of the failing mechanism of life. The second problem is that “meaning” is kept separate from the body. Stories are not embedded deeply into the sinews of the body, indistinguishable from it, but are interpretive overlays, representations. The “facts and objects” of medicine are invested with narratively produced meaning.37 This more subtle dualism, which I am certain Cassell did not intend, is a dualism of mechanism versus meaning. Thus, Cassell’s otherwise laudable attempt to move medicine to a more holistic understanding of people and suffering perpetuates the metaphysics (and epistemology) already at the heart of medicine. Meaning and purpose are post hoc additions to the biological machine and lack an integrated

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significance. The body per se has no significance except in what is ascribed to it. The scientific body is never a fiction; transcendence through re-narration is always a fiction. Thus, Cassell’s and Charon’s holism turn out to involve a dualism, where bodies are bodies and persons are persons, and where mechanism and meaning are distinct. I am claiming, in contrast, that meaning is not added post hoc but is always already part of a body, which is molded by meaning and purpose and shaped by communal practices. In suffering, the body is shifting in the way that one is embodied. To suffer is to undergo change in one’s way of being embodied, in one’s embodied intentionality. To suffer is to undergo loss of capacity, potency, history, project, or purpose, all of which are integral to this particular embodied being. To suffer is an embodied mourning of what is passing away, or what has passed away long ago, or what will pass away. One can suffer what was lost in the past; one can suffer what has been lost as a possible future, or what is lost now. And one can suffer not merely what material functionality has been, is, or will be lost, but what particular embodied projects and purposes have been, are being, or will be lost. One can suffer the loss of possibility; one can suffer the loss of purpose. But the suffering, the undergoing of the loss, itself is embodied in the now of this body, whose embodied intentions are directed to what is being lost. In this sense, matter is not distinct from form or from telos. A person seeks medical attention precisely because, as I noted above, he perceives his projects as disembodied once the body becomes a failing machine. The call of those who suffer emerges in the loss of function, but it is also a loss of the purpose transcending the function. Medicine, however, has already excluded from its view the possibility of the particularly embodied histories and particularly embodied projects of the patient, in order to gain power over the failing mechanism. The gaze of medicine has eliminated from consideration the form and telos of any particular body— and for that matter, all particular bodies. Medicine, in its dualism, distinguishes between embodied project and functionality, and between human purpose and the body’s physiological functionality, for the sake of preserving that functionality; and all of this is done for the good of the patient. At one level, that is medicine’s calling. The dogma of medicine emerges out of this moment of failing function, of dying, when human being itself is being lost. This dogma is de-

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rived from a pale and pathetic functional remnant of the embodied purpose of the particular body. Thus, in the focus on functionality, medicine does not, and perhaps cannot, ask itself the question: Will this mechanical function and intervention return this body to its purposes, projects, potencies, or capacities? It does not ask itself, Can this body re-orient or change its purpose — here understood as not merely goals but goods — in light of a new bodily reality? And in the forgoing chapters, I have claimed that these failings are because the metaphysics of medicine thinks of body and physiology in functional terms, and so it necessarily does violence to bodies. The technologies of medicine are geared not to purpose and goods but to functionality; the assessments and discourses of medicine are geared not toward individual purpose or meaning but toward some notion of social function and/or the good death that has been captured, or created, in assessments designed for better social functioning. As such, medicine becomes forgetful of the living and embodied telos of this particular body that has called to it for help. It becomes forgetful of being embodied. As Cassell notes, medicine thereby causes suffering.38 Robert Truog recounts a story of a child who had been neurologically devastated following major surgery. After it was clear that the child would not recover, the family was counseled not to pursue aggressive treatment options in the event that the child experienced cardiac or respiratory arrest. The family had also been counseled, and expertly so (as Truog is quick to point out), that palliative treatment would be the best option.39 They did not agree. The child subsequently sustained cardiac arrest, and a full resuscitation protocol was begun, which failed. Truog admirably describes the toll that such futile CPR protocols have on nursing and medical personnel, and the tensions that doctors face when making decisions about what ought to be done in such cases. However, Truog makes one statement that strikingly suggests the position that medicine has with regard to the body: “[W]hat surprised me most was when the father gently opened his son’s shirt, revealing all the puncture wounds and bruises from our failed attempts to place a subclavian catheter. He looked up at me and said, ‘I want to thank you. I can see from this that you really tried; you didn’t just give up and let him die.’”40 It is as if the boy’s body carried no significance in and of itself. Rather, it was merely an object invested with meaning and purpose negotiated

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by the living, by those who can claim some sort of right to map meaning and purpose over the body. In setting aside meaning and purpose and focusing on mere functionality, the doctor already presumes that disconnecting the body from meaning is a possibility. It is here that medicine’s metaphysics fails, because it does not participate in the values or metaphysical stances of the patient or the patient’s family and community. And because the doctor must constantly look to his patients for what meaning the body has, he cannot help but pretend to share the patient’s values as part of a mechanism to grant meaning to the body. I agree with Cassell’s assertion that the loss of personal integrity resulting from loss of bodily function resists taxonomic classification; but I would modify it to say that the loss of embodied integrity resists taxonomic classification, and that medicine, qua science, can only classify taxonomically by breaking human being into parts, into nominal definitions. The entirety of this book affirms Cassell’s position on this point. However, I resist the idea that our bodies are distinct from the meaning and purposes of persons, for meaning and purpose are fully embodied. They are embodied realities. In treating as inconsequential the formal or final causes of human being, medicine can never be holistic. Insofar as medicine continues to operate on the metaphysics of material and efficient causation, it will necessarily fail to adequately comprehend human living and human dying; that is to say, modern medicine will always fail human being. And no amount of post hoc reinvestment of meaning into mechanism can save it.

be in g -t h e r e - Wi t h  a n d  t h e c aLL o f th e oth er

Suffering elicits responses in a myriad of ways, including ways other than mere functional intervention. Responding to the loss of functionality is the calling of the physician. She cannot do otherwise and still be physician. The response of the medical apparatus is a response of efficient control, which is not a bad response, but which may be an inadequate one, especially in the care of the dying. However, it is the response prior to the response qua doctor that in some mysterious manner makes the suffering of the dying bearable and calls the doctor into being. Thus,

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it is this prior call for response and the response that preexists the medical response to which I draw attention. On the one hand, we have the one who is suffering, and on the other, we have the one who perceives the suffering. Since we are speaking about the response of medicine, I shall refer to the sufferer as “the other,” and I shall refer to the perceiver of the suffering as the perceiver. What applies to the perceiver applies to the doctor as both doctor and as human being. However, here I am interested in a response different from the response of the doctor, for it is a response qua human being that first calls the perceiver into being a doctor, or a nurse, for that matter. Although there may be many motives for becoming a doctor, in what follows, I will assume that most doctors are moved by the suffering of another. Medical school applications, as I indicated at the start of this chapter, often tell stories about individuals who have touched the lives of potential students and frequently concern the suffering of someone close to the student.41 So, prior to the study of medicine, the suffering other calls for response from the potential student; and the suffering that she perceived moves her to respond. Before becoming or considering becoming a doctor, she perceives the suffering of the other and, in a different phenomenological sense, suffers in the perceiving. Thus, the perceiver sees suffering and is called out of her own projects and purposes for the good of the other. She recognizes the need of the suffering other, and she is called into being a caregiver, perhaps even called into becoming a doctor by and for this particular suffering other. The perceiver of the other’s suffering is called to change, to become what she is not, a call that she may not wish to receive. Therefore, the call of the other is not always a call that is willingly heard. The perceiver may wish, for example, to remain a child. When her father is losing embodied integrity, she is called out of being a child who is dependent upon her father and called into being someone upon whom the father depends. The independent father becomes dependent upon the dependent daughter, who finds that she is called to independence for the good of her father.42 In the suffering of the other, one is called into becoming — and thus into being — what the other needs. Both the other and the perceiver undergo a transformation of being. They both suffer. Though each suffers differently, and each undergoes a different kind of transformation, each suffers the loss of the way things were.

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The non-doctor, then, is called into being a doctor by someone whose suffering changed who the non-doctor would be. Thus, in most cases, the love of an other, a desire for the good of a suffering other, began that initial transformation into becoming doctor. It is from such experiences, or for some such reason, that most people find their calling into medicine. The call of the other, a call that calls the non-doctor into becoming doctor, is already there prior to the doctor studying medicine; and at some level, such a calling is necessary for her to be doctor. In this way, the primordial gift of the embodied call of the other constitutes the receiver more profoundly and deeply than the doctor’s training and education.43 In the call, the receiver is called to respond. Response to suffering can come in many forms. Indeed, there are as many ways of responding to suffering as there are persons who suffer and persons who respond to suffering. For a medical doctor, the response is conditioned by the training that the doctor has received. She must have the training, tools, and techniques by which to respond to the particular other that suffers. And by virtue of being formed in a Western medicine committed to a metaphysics of efficient and material causation, she responds by first seeing the loss of function and responding to that functional loss. This is a response for the good of the patient. Yet the many successes of medicine at the level of physiology tend to lull the doctor into complacency, such that she sees all problems as problems of function and materiality, missing the problems of form and purpose. Too frequently, the doctor — the embodiment of all the medical apparatuses for seeing, knowing, and doing qua doctor — is forgetful of the more primordial call that called her into becoming a doctor in the first place. As Krakauer suggests, we doctors write prescriptions for areas of embodied living, which are always shaped by particular histories, in particular places, for particular purposes. While the prescriptions of medicine can solve problems of functionality, the fact remains that, unless function is completely returned, these prescriptions are unable to respond to the losses of capacities, histories, and so forth. Thus, as I have already noted, when function is not fully returned, the coldness of medicine stands out. The problem is that the doctor’s training and education get in the way of perceiving suffering beyond function, for the doctor has been seduced by the efficient and effective manipulation of bodies

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and psyches as the most important response to suffering. She has become anesthetized to embodied suffering, literally without the sense of a suffering deeper than functional loss of material objects.44 This repeated way of prescribing is the besetting sin of medicine. Medicine’s greatest strength is in responding to failing bodies in their functionality; its greatest weakness is that in responding at the level of functionality without attention to full embodiment, medicine will necessarily always demean embodied living because it is forgetful that meaning and purpose are part of the embodied function of this particular body. Moreover, in repeatedly responding with techniques and discourses created by the disciplines of the human sciences, medicine also prescribes interventions for areas such as interpersonal relationships, or religious or spiritual beliefs, which are intimately related to meaning and purpose and to embodied being. The doctor must therefore be wise enough to distinguish when doing something functional is necessary, when it is harmful and can only heighten suffering, and when she is simply called to be there with the suffering other, or when she is called to get out of the way of more important people, such as family, friends, priests, or rabbis. The doctor must learn to be there with the suffering other when she intervenes in a bodily function, and even when she cannot intervene at all. Moreover, the primordial call that called the doctor into being is not only a call to do something but also, at the same time, a call to be there with the one suffering. On the part of the other, the call to “do something” is primary, and the being-there-with is perhaps secondary; on the part of the one who hears the call, the first response is to be there with, and the second is to figure out what must be done. Yet the call and response must be a whole, rather than being parsed into doing and being, or a doing in excess of the being-there-with. The call (or demand) of the other to “do something” might actually lead to the diminishing of the other’s embodied living, if by doing something, the other’s form and purpose are diminished. Similarly, the response of being-there-withthe-suffering-other without “doing something” can lead to more suffering; but a response that “does” something without also being-therewith only perpetuates and alienates the other from his embodied state. And if the response is always merely a response of doing something, especially for problems that can only be addressed in being-there-with,

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suffering is further heightened. When suffering, we might ask for the wrong thing; in responding, we might do the wrong thing. In doing, one must always give oneself; one must always be there with the other. A giving of the self is not a functional intervention to efficiently bring a new effect into being. This giving of oneself to suffering is possible both when one can effect some sort of mechanical and functional intervention, and when one cannot. The response of being-there-with-the-suffering-other can come in listening, not for the purpose of diagnosis and intervention, but in being moved by the suffering of the other. In listening, the doctor herself is changed. Response can come in the form of silence, by sitting there quietly waiting for the other to call for something, which is always a calling into being, even when the call is a call to being-silent-with. Response to suffering may come in the form of speaking with; yet the ability to speak authentically to deep suffering is possible only because one has felt deeply the suffering of the other and of many others. And response may come in the form of no response at all, in the recognition that the doctor cannot be what the other calls her to be. The response may be one of calling on others with skills — as opposed to techniques — that the doctor may not possess. Finally, there are as many ways of responding to suffering as there are ways of suffering, for suffering is itself particularly embodied, as are responses. In short, the response to suffering is a suffering-with-theother and undergoing-with-the-other. However, what is called for in undergoing the loss with the other is always a recognition that one’s own undergoing, one’s suffering with the other, is undergone and suffered differently from the suffering of the other; it is arrogant to assume that one has suffered the same, when the other’s capacities, potencies, projects, and purposes are particular to him.45 Both the other and the one who perceives and receives are changed. Altruism, so prominently called for in our time, is simply not possible. The response is not an altruistic response, in which the responder receives nothing, for she has already received the call to being-there-with, a call that constitutes her purpose for being. The call changes the perceiver, even if she cannot respond. The call changes the receiver, if it is gladly received. However painful, if the call is received, it is gift. In both call and response, the perceiver is transformed and is given something even if it cannot be fully understood.

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Even if not received, she is still changed. Nonetheless, being-there-withthe-suffering-other changes the way that each is embodied. Whether the doctor is capable of intervening with technology or not, it is the response of suffering-there-with-the-other that soothes — because it can rarely alleviate — the suffering of the other.

t he  p r i or i ty  of  b e i n g - t h e re- Wi th -o t hers  a nd  s u f f e r i n g - th e r e - W i th

The claim that we cannot know the suffering of the other, although true in one sense, is an excessive claim of radical individualism and the solace of those too afraid to enter into the suffering of an other. Yet to assume that one can respond to the suffering of any other is arrogant. Heidegger, in a section of Being and Time devoted to the question “Who is the being of being-in-the-world?” draws our attention — in a rather unsatisfactory manner — to the others who are in the world with Dasein. Yet for Heidegger, being-with-others, Mitda-sein, first comes to the intention of Dasein, not by virtue of the others, but by virtue of the things that are ready-to-hand, that is, already ready for use in projects. “The boat anchored at the shore refers in its being-in-itself to an acquaintance who undertakes his voyages with it, but as a ‘boat-strangeto-us,’ it also points to others.”46 Others have prepared things that appear for us, by virtue of which we come to know others.47 As Dreyfus points out, Heidegger is always concerned with the being of things that appear for Dasein in the phenomenological reduction;48 for Levinas, Heidegger is also primarily concerned with the being of Dasein, hinting at the selfishness of Dasein. Dasein is concerned with things and with itself. Heidegger was not concerned with others. So far, I have only hinted at others who are already there prior to the call of the other; we find that in both the call and the response, others have always already been there. We find that the other who calls and the receiver of the call have already been constituted by being-therewith-others. I have suggested that, with careful attention, we might find that the primordial response is, first of all, the gift of being-there-with and suffering-there-with the other. We find that what is given primordially is the gift of the self, prior to any intervention. While that response

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may not have alleviated the functional problem, it could very well sooth the suffering and at the same time move the perceiver into becoming what the other needs. As I have observed, very few people go into medicine or nursing to dominate the being of others. For most, some primordial call constitutes the receiver prior to any functional response.49 The call of the other originates without force and moves without force the would-be doctor or nurse to response.50 Furthermore, just as the perceiver is moved in a manner different from efficient causation, similarly, the balm that is suffering-with-the-other is different than medicine’s causing and forcing suffering to cease. The perceiver of suffering perceives the loss and is moved to fill the loss, but in a manner that may or may not alleviate the functional loss. To be moved by the call of an other is a different kind of motion than that forced by a social apparatus that compels us to intervene upon the material of the body or body politic. How does a response that does not alleviate functional loss avoid becoming a violation, an arrogant condescension that suffering must be endured? The response has to be conditioned by right relationship. Prior to the suffering call of an other to the one that perceives the suffering, there is already a being-there-with-others. Being-with-others is already there prior to the call of the other who moves me to become what I need to be for her. Put into Heideggerian terms in a non-Heideggerian way, prior to Dasein is Mitda-sein; being-in-the-world is always already a being-there-with-others-in-the-world. Those who suffer and those who perceive suffering are always already among others. The care and concern of the others shape each embodied being prior to any call. Therefore, the suffering other calls according to the norms of others, and the perceiver can understand the call rightly and respond rightly to the call because of the primordial being-there-with-others; by virtue of the others who are already there, Thou and I are already in relationship. Prior to the call of the other, the one who perceives that call has already received the gift of care from others who met his needs in his dependency. By virtue of dependency upon being-with-others in community, one has already received responses to one’s own needy call, and by virtue of the community, one can learn how properly to offer care because care has already been received.

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The idea that medicine needs assessments because there is no community is already a sickness unto death of medicine. One learns from community, not from assessments, to perceive rightly the needs of the suffering other. In the community, one learns to respond rightly to the call of the other, not with interventions designed to control. That a mode of suffering-with-the-other as a response can be wrong only highlights our dependency. Thus, before one can respond to some unknown or strange other, one must learn from being-with-others in a community into which that stranger has been born, formed, and molded, and which orders her purposes according to those of the community of others. Only then can one judge one’s responses, that is, judge whether calls have been rightly understood and rightly answered. The other that calls, then, is dependent upon the one who perceives, receives, and responds to the call. And the perceiver is dependent on the priority of being-withothers in a community that forms him to perceive, receive, and respond rightly to the call.51 In living traditions, the community shares a common story of origin and directedness toward some telos.52 They have their origin in oikos, the home, and usually are animated by desire and love, by the task of care, and by the task of meeting embodied needs. Communities are bounded by desire for the good of the other rather than by forces that animate social and political apparatuses. Some will object to my characterization of oikos and community as moved by desire, love, and care, by claiming that a community can just as easily be driven by force and political power. This criticism, however, only proves my point that beingwith-others is primordial and dependent upon right relationship; for we quickly judge that force has no place in oikos. Right relationship is essential for calling and responding rightly. In assuming a shared understanding of origin and purposes, as MacIntyre argues, one can work out, through practical reasoning, how to act and to move from the way things are to the way things ought to be. Thus, even the practical reasoning of communities is ordered by particular understandings of form and purpose, of significance and telos. Yet what should we make of the moral stranger if we put the emphasis on the right relationship of the community of others? Medicine believes that it can respond with technologies and techniques to the

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stranger without violation. Medicine, in its own belief-system, has no moral strangers. Whether Jewish or Christian or Muslim or Hindu or agnostic, we are all one under medicine’s assessments and operationalized definitions. At the same time, medicine turns us all into moral strangers, for everyone is always treated as outside of community. Through its techniques. medicine dilutes difference into the sameness of the assessments, thereby reconstituting the other not as a particularly embodied being but as an individual radically estranged from others, who can only become whole once medicine intervenes. The communal bonds of being-with-others are not the political and social apparatuses to which I have drawn attention. Communal bonds share a common unity without imposing uniformity. In living traditional communities, moral strangers are engaged with hesitancy, but this is not necessarily a hesitancy of fear. Rather, it is one of respect, as if one were entertaining angels unawares, or the Divine One, or the God-man himself. Such is the case in both Christianity and Judaism, despite their great differences. That communities fail is simply evidence that they must practice at rightly hearing the call of the other, understanding the differences of the other, and rightly responding. If the other — even the moral stranger — is particularly embodied, and if the one who responds is particularly embodied, then there will be calls for particular responses and ways of being-there-with. Each “other” is embodied according to the histories, capacities, projects, and purposes into which they have been initiated by a community. Thus, it is possible that each hesitates — the sufferer in his call, the perceiver in her response — not out of fear of each other but out of respect for each other. To perceive rightly, to receive rightly, and to respond rightly to the call of a moral stranger therefore requires practice, not assessments. On the one hand, practice — practical reasoning — involves hoping and believing that, in time, each person can understand the other. In utter constrast, assessments map onto the relationship what the assessors have defined, operationalized, and tested. Prior to the suffering of the other or the response to the suffering other is the being-with-others, but the call and response must be rightly heard, received, and answered. Therefore, prior to being-there-with-the-other — Levinas’s I-Thou — is being there within communal bonds, in right relationship so that one

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may hear the call and respond to it rightly, even with a hesitating respect for the stranger.

co n c L ud i n g  h e si ta n t Ly

I have attempted, with some hesitation, to approach phenomenologically the question of a response to what ails contemporary medicine. I maintain that the relationship to the dead body, the scientific body, which is the foundation of medical knowledge, results in the alienation that patients often feel, whether they are on the curative, management, or palliative tracks. Even within medicine in its kinder and gentler mode, that of biopsychosociospiritual medicine, one finds experts deploying assessments in order to determine the precise spiritual category, social situation, or psychological state into which to place the patient. They can thereby deploy their expertise and powers for the benefit of the patient. In its biologically, psychologically, socially, and spiritually informed — that is to say, scientifically informed — practices, medicine believes that it has dissolved difference. Yet we remain moral strangers precisely because that which we share — mere functionality— cannot be mere functionality. The efficient causes of life in the body are part and parcel of the efficient causes of life in the body politic. Total care becomes totalizing care, where the other is measured according to what biopsychosociospiritual experts have claimed to be true, and where the patient has interventions deployed upon her, disciplining her according to disciplinary expertise. We are moral strangers precisely because we believe that in sharing functionality as our common ground, we have overcome the particularity of place and traditions; and it is this that alienates us from one another. The problem is that in focusing on efficient and material causes, medicine alienates the bodies of patients from their capacities, histories, projects, and purposes, which are molded in communities. In other words, bodies have an integrity prior to and independent of the post hoc investment of meaning and value that is added onto living and dying. For centuries now, Westerners have attempted to rid themselves of metaphysics. Yet in “ridding” ourselves of metaphysics, we actually

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only succeeded in ridding ourselves of a metaphysics of meaningful formal and final causes, according to which bodies have meanings and purposes from the start. I have claimed that our attempt to“rid” our sciences and practices of metaphysics has led to a kind of metaphysics of efficient causes, forces, and power. These forces are deployed over and over again, not only upon the material of the body but upon the material of the body politic, both in our technology and our disciplinary techniques. I have claimed that medicine participates in causing life and death, where life is understood as matter in motion and death is understood as stasis. Has not medicine in the twentieth century been about power, about efficiently causing life and death? A medicine with claims to universal techniques of assessment in physiology, psychology, social situations, and spirituality cannot address the rich particularities of patients in given communities, with their shared traditions, beliefs, and practices about living and dying. In eliminating the particulars in order to be everything to everyone, medicine enacts a very subtle violence that rears its head periodically and sometimes in extreme ways. Our drive to intervene in the efficient mechanism of life is an attempt to alleviate suffering, suggesting that medicine participates in the way we think life ought to be, that is to say, in life’s final cause. It has just overstepped its limited metaphysics. In short, we must — following MacIntyre — take dependency seriously. We must hesitate before the strangeness of the other before acting, and we must not pretend that we belong to communities of shared metaphysics. I have only gestured to a remedy, or rather a long course of therapy. It begins in the phenomenon of the call of the suffering other and in the always already being-there-with-suffering-others in our dependency. The therapy that I envision, however, is not a cure-all. It cannot be that, because life is in flux; life is change, it is always an undergoing physiologically, as well as in the many other ways of being together. To be alive is to suffer; such is the human predicament. That we think that we ought not to suffer in life is merely indicative of the fact that we share some understanding of what human life is and what it ought to be. This does not mean that human life should be the same for everyone under a disciplinary scheme in which medicine both originates and participates. Medicine is about the body; politics is about the bodies of the polis.

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I have proposed that this long course of therapy is already begun in every particular call and in every particular response. Embodied life is not merely one efficient cause after another, or one force acting upon another; it is not Guyton’s automaton, Bernard’s animal machine, or Bichat’s functions that resist death. I have suggested that form and purpose are always already embodied. Meaning and purpose in anyone’s life have already insinuated themselves into the sinews of the body. The neurosciences offer growing evidence that social and environmental factors shape the brain.53 Neuroplasticity suggests that bodies are molded by the milieu within which they are found. I am claiming that the content of what shapes bodies is more important than the fact of the efficient shaping of the material of those bodies. Therefore, loss of function is always also a loss of capacities, histories, projects, and purposes that begin outside the body and are directed outside the body. What is suffered in the body is a loss that reaches further back and further ahead of the materiality. What is lost exceeds the body precisely because bodies exceed themselves. What if we began to listen more deeply to the body for the loss that exceeds the body? What if we took seriously the idea that the body is excess? I have hinted that this listening is not a listening with the acumen of one bent on intervening with scientific prowess, but a listening with the humility of those who first offer themselves to suffer-therewith-the-other. The bodies of those suffering-there-with-the-other suffer differently than the other. They are also transformed, and differently so. I have suggested that this offering of the self is not merely a salve, a balm for suffering and dying, but is necessary before intervening. Careful attunement to the call of the suffering other might move the soul of medicine toward purposes that exceed the management of bodies. I cannot fully address here the questions that emerge from this hesitant response. How is the excess suffering of the other transformed into a gift for the one who responds? I have not fully explored how suffering calls one into becoming one who cares. Nor have I fully explored — indeed, I have only tentatively suggested — the ways in which local communities of robust metaphysical commitments are necessary to the discernment of what counts as a call from a suffering other, of how one might rightly receive that call, and of what a proper response to a call might look like. To do so, one would have to be immersed in and to

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believe in the metaphysical commitments of a particular community at a given time and place. I have only hinted at the idea that prior to the call is a community that has already given prior gifts, such that the one who is to hear and answer the call of the suffering other is already capable of doing so. I have only begun to think about the exchange of such gifts, that is, about how part of the response occurs out of indebtedness to the community for what has been given. Can we avoid the collapse into a crass transaction, if one is indebted? Can what is given ever be repaid? Is the response not already a response of one who cannot repay? Response, then, is not in kind; it is not a mechanistic transaction. Instead, response is asymmetric; it is not a repeatable response. Response is a response with difference. Is the gift, then, not already the excess of grace? Furthermore, I have not sufficiently pondered the question of what a science that is derivative from the messiness of very particular calls born in very particular losses might look like. How might medical knowledge be different if it were constituted by a more complete metaphysics with a more diverse, and yet more robust, understanding of human flourishing in its particularity? I have not explored how a more fully developed understanding of causation, where already meaningful formal and final causation are integrated into material function, might inform our notions of life. Although the dead body is epistemologically normative for contemporary medicine, making life and death into binary states of matter upon which we may or may not force life, could we not conceive of the flux and difference of life as normative, without a static foundation? Could we conceive life differently than Marie Bichat and Claude Bernard, for whom life and our knowledge of it are derivative from static material forced into motion? In what ways might life be thought differently, indeed, thought as gift even in suffering? Might it not be that the gift that is the prior community transforms suffering, and thus transforms life — even in its suffering — into gift? With a more careful attunement to fully embodied life, could medicine strike a more humble pose toward the body if it understood that technology often distorts the being of the patient and replaces function without replacing purpose? Do bodies not have an integral value quite apart from the values that those with the power to interpret impose upon it? Does a body, with its meanings and purposes, not exceed the

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categories into which the doctor might put it? Would medicine then be more respectful of the living and dying body, if it took form and purpose as already always embodied? These questions stop being scientific and push the limits of philosophy into areas more ethereal than much of contemporary science and philosophy can go. In other words, these questions open into an arena of uncertainty, where meaning cannot be limited to what is true and transferable to all other bodies. The content of meaning is the truth. It might be that we can learn once again from the places at the margins of contemporary life, at the margins in the spaces created by liberalism and biopolitics. It might be that we can learn once again not from history— a static past — but from living traditions. It just might be that the practices of religious communities marginalized in modernity and laughed at as unscientific are the source of a humane medicine. Perhaps there, in living traditions informed by a different understanding of space and time, where location and story provide meaningful contexts to offer once again hospitality to the dying as both cura coporis and cura animae, we will find a unity of material, function, form, and purpose. This phenomenological exploration has opened up questions that cannot be answered by phenomenology or even philosophy generally. We have now moved away from phenomenology to questions that bear on thinking and doing, which are questions properly of holy men and women, of saints — call them the true theologians — who offer themselves to the living and the dying. Avoiding a theological turn here becomes hazardous. Steven Toulmin has suggested that medical ethics saved philosophy from the brink of obscurity.54 Might it not be that only theology can save medicine?

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Notes Prelude 1. I recount this story with the permission of Nancy’s husband. I realize that when writing a narrative, one leaves out or puts in details to make the point, as Tod Chambers suggests happens in all case histories. See Tod Chambers, The Fiction of Bioethics: Cases as Literary Texts (New York: Routledge, 1999). 2. I say “usual” because there were no standard treatments for this particular tumor at the stage it was found and the aggressiveness with which it manifested itself. 3. See Elisabeth Kübler-Ross, On Death and Dying (New York: Scribner, 2003). Originally published in 1968. See also Elisabeth Kübler-Ross, Death: The Final Stage of Growth (Englewood Cliffs, NJ: Prentice Hall, 1975). The five stages of grief are denial, anger, bargaining, depression, and acceptance. It should be noted that few counselors today think patients should be guided from denial through the various stages to the final stage of acceptance. Yet of all the five stages, only acceptance has a positive connotation. 4. See the special issues of Christian Bioethics devoted to generic chaplaincy: H. Tristram Engelhardt, ed., Christian Bioethics 4(3):231– 322 (1998), and Corinna Delkeskamp-Hayes, ed., Christian Bioethics 9(1):3–137 (2003). See also Jeffrey P. Bishop, Philipp W. Rosemann, and Frederick W. Schmidt, “Fides Ancilla Medicinae: On the Ersatz Liturgy of Death in Biopsychosociospiritual Medicine,” Heythrop Journal 49(1):20 – 43 (2008). 5. Dylan Thomas, “Do not go gentle into that good night,” in The Poems of Dylan Thomas (New York: New Directions, 1952). 314 •

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6. See, for example, Sharon R. Kaufman, And a Time to Die: How American Hospitals Shape the End of Life (Chicago: University of Chicago Press, 2005). 7. Wesley J. Smith, Culture of Death: The Assault on Medical Ethics in America (San Francisco: Encounter Books, 2001); John Paul II, Evangelium Vitae: On the Value and Inviolability of Human Life (Washington, DC: U.S. Catholic Conference, 1995). 8. Peter Steinfels, “The Pope in America; Blending Kindness with Sternness,” New York Times, August 16, 1993, A12. 9. David Hollenbach has specifically noted the agonal picture painted in apocalyptic terms in Evangelium Vitae. See his “The Gospel of Life and the Culture of Death: A Response to John Conley,” in Choosing Life: A Dialogue on Evangelium Vitae, ed. Kevin Wm. Wildes and Alan C. Mitchell (Washington, DC: Georgetown University Press, 1997), 37– 45. 10. The original Greek meaning was of a public gathering for games, not unlike the Olympic games. 11. The term “agonal” in medicine is usually understood as the struggle to breathe in the waning moments of life. Originally, it was understood as just that, a struggle to stay alive. However, it is generally understood today in a much different way, as characteristic of agony, as in painful suffering. 12. Dale C. Smith, “The Hippocratic Oath and Modern Medicine,” Journal of the History of Medicine and Allied Sciences 51(4):484– 500 (1996). 13. Ibid. 14. See Tom Shakespeare, Disability Rights and Wrongs (London: Routledge, 2006). See also Colin Barnes, Disabled People in Britain and Discrimination (London: Hurst and Co., 1991); and Michael Oliver, Understanding Disability: From Theory to Practice (New York: St. Martin’s Press, 1996). 15. Not Dead Yet! is an activist group founded in 1996, after Jack Kevorkian was acquitted of murder charges because of his assistance in the death of two women who, the group believes, suffered from nonterminal disabilities. http://notdeadyetnewscommentary.blogspot.com/ (accessed February 12, 2008). 16. For instance, the American Society for Bioethics and Humanities meeting was delayed in starting due to a sit-in protest in Albany, New York, in summer 2006. 17. See Stephen D. Edwards, “Prevention of Disability on the Grounds of Suffering,” Journal of Medical Ethics 27:380– 382 (2001). See also Solveig Magnus Reindal, “Disability, Gene Therapy, and Eugenics — A Challenge to John Harris,” Journal of Medical Ethics 26:89– 94 (2000). 18. See Wendy J. Gagen and Jeffrey P. Bishop, “Ethics, Justification, and the Prevention of Spina Bifida,” Journal of Medical Ethics 33(9):501– 507 (2007).

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19. See Edwards, “Prevention of Disability”; and Reindal, “Disability, Gene Therapy, and Eugenics.” 20. See Jay Dolmage and William DeGenaro, eds., “Responding to ‘Million Dollar Baby,’ ” Disability Studies Quarterly 25(3) (2005). http://www .dsq-sds.org/article/view/590/767 (accessed February 3, 2011). See also Terri Mauro, “Is ‘Million Dollar Baby’ Dangerous?” http://specialchildren .about.com/od/inthecommunity/i/milliondollar.htm (accessed March 3, 2008). 21. See Jeffrey P. Bishop, “The Broken Body and the Disabled Body: Reflections on Disability and the Objects of Medicine,” in Theology, Disability, and the New Genetics: Why Science Needs the Church, ed. John Swinton and Brian Brock (London: T & T Clark, 2007), 214 – 233. 22. Ibid., 231. 23. See Gagen and Bishop, “Ethics, Justification”; and Bishop, “Broken Body.” 24. Christopher Newell, “What’s Wrong with You? Disability and Genes as Ethics,” in Theology, Disability, and the New Genetics: Why Science Needs the Church, ed. John Swinton and Brian Brock (London: T & T Clark, 2007), 44 – 56. 25. See Ron Amundson and Shari Tresky, “On a Bioethical Challenge to Disability Rights,” Journal of Medicine and Philosophy 32(6):619– 633 (2007). 26. Kaufman, And a Time to Die, 135. 27. See Jeffrey P. Bishop, “Biopolitics, Terri Schiavo, and the Sovereign Subject of Death,” Journal of Medicine and Philosophy 33(6):338– 357 (2008). 28. Kaufman, And a Time to Die. See also Nicholas A. Christakis, Death Foretold: Prophecy and Prognosis in Medical Care (Chicago: University of Chicago Press, 1999). 29. Kaufman, And a Time to Die, 207– 235. 30. Margaret Lock, Twice Dead: Organ Transplants and the Reinvention of Death (Berkeley: University of California Press, 2001), 17– 22. 31. Diagnostics and Statistical Manual of Mental Disorders, 4th ed. (Washington, DC: American Psychiatric Association, 1994), 684 – 685. 32. For an excellent articulation of the spatialization of time, see Catherine Pickstock, After Writing: The Liturgical Consummation of Philosophy (Oxford: Blackwell Publishers, 1998). 33. Daniel Callahan, The Troubled Dream of Life: In Search of a Peaceful Death (Washington, DC: Georgetown University Press, 2000). 34. Ibid., 73. Callahan points out that there is no disease that causes death that the NIH is not actively researching. 35. See Richard J. McCormick, “To Save or Let Die: The Dilemma of Modern Medicine,” Journal of the American Medical Association 229:172 –177 (1974). See also Richard J. McCormick, “The Quality of Life, the Sanctity of Life,” The Hastings Center Report 8(1):30 – 36 (1978); and

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J. Garner, “Palliative Care: It’s the Quality of Life Remaining that Matters,” Canadian Medical Association Journal 115(2):179 –180 (1976). 36. Smith, Culture of Death. 37. Ibid. 38. Plato, Symposium, in Plato: Complete Works, ed. John M. Cooper and D. S. Hutchinson, trans. Alexander Nehamas and Paul Woodruff (Indianapolis: Hackett Publishing Co., 1997), 489 – 492/206e – 208e. 39. See “palliate,” Oxford English Dictionary, 2nd ed., 1989. OED Online, Oxford University Press, 17 August 2009. http://dictionary.oed.com/ cgi/entry/50169794. 40. See Friedrich Nietzsche, The Birth of Tragedy, in The Birth of Tragedy and Other Writings, ed. Raymond Geuss and Ronald Speirs (Cambridge: Cambridge University Press, 1999). Originally published in 1871 as Die Geburt der Tragödie. See Martin Heidegger, Being and Time, trans. Joan Stambaugh (New York: State University of New York Press, 1996), 67– 71. Originally published in 1927 as Sein und Zeit. 41. With respect to Scholasticism, see John Milbank, Being Reconciled: Ontology and Pardon (London: Routledge, 2003); see also Pickstock, After Writing (1998). With respect to the Enlightenment, see Alasdair MacIntyre, After Virtue, 2nd ed. (Notre Dame, IN: University of Notre Dame Press, 1984). See also MacIntyre’s Three Rival Versions of Moral Enquiry: Encyclopedia, Genealogy, and Tradition (Notre Dame, IN: University of Notre Dame Press, 1990). 42. See Carl Elliott, A Philosophical Disease: Bioethics, Culture, and Identity (New York: Routledge, 1999), xxii. 43. John Milbank, “The Transcendality of the Gift: A Summary,” in The Future of Love: Essays in Political Theology (Eugene, OR: Cascade Books, 2009), 354. 44. See Martin Heidegger, The Question Concerning Technology, trans. William Lovitt (New York: Harper Torchbooks, 1977). Originally published in 1954 in Vorträge und Aufsätze by Günther Neske (Pfullingen). 45. Francis Bacon, The New Organon, ed. Lisa Jardine and Michael Silverthorne (Cambridge: Cambridge University Press, 2000), 60, 221/Book I, aphorism LXXIII, Book II, Aphorism, LII. Originally published in 1620 as Novum Organum. 46. Eric Krakauer, “Prescriptions: Autonomy, Humanism, and the Purpose of Health Technology,” Theoretical Medicine and Bioethics 19:522– 545 (1998), 535. 47. See E. A. Burtt, The Metaphysical Foundations of Modern Physical Science (Amherst, NY: Humanity Books, 1999). 48. Derek Doyle, Geoffrey Hanks, N. MacDonald, “Introduction,” in Oxford Textbook of Palliative Medicine, 3rd ed., ed. Derek Doyle, Geoffrey Hanks, and N. MacDonald (Oxford: Oxford University Press, 2004), 4.

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Chapter 1. Birthing the Clinic 1. Alan Megill, “The Reception of Foucault by Historians,” Journal of the History of Ideas 48(1):117– 141 (1987). See also Georges S. Rousseau, “Whose Enlightenment? Not Man’s: The Case of Michel Foucault,” Eighteenth Century Studies 6:283 – 286 (1972 – 73). 2. See, for example, Raymond Tallis, Enemies of Hope: A Critique of Contemporary Pessimism (London: Palgrave Macmillan, 1999). See also the essays in Michel Foucault, Philosopher, ed. and trans. Timothy J. Armstrong (New York: Routledge, 1989). 3. See Jon Simons, Foucault and the Political (London: Routledge, 1995). 4. See J. Joyce Schuld, Foucault and Augustine: Reconsidering Love and Power (Notre Dame, IN: University of Notre Dame Press, 2003). 5. See Tallis, Enemies of Hope. 6. Gary Gutting, “Michel Foucault: A User’s Manual,” in The Cambridge Companion to Foucault (Cambridge: Cambridge University Press, 1994), 2. 7. See Michel Foucault, The History of Sexuality, vol. 1, trans. Robert Hurley (New York: Random House Vintage Books, 1978). Originally published in 1976 as La volente de savoir by Éditions Gallimard. See also Michel Foucault, “Polemics, Politics, Problematizations: An Interview with Michel Foucault,” in Foucault Reader, ed. Paul Rabinow (New York: Pantheon Books, 1984), 381– 390. 8. Foucault, “Polemics, Politics, Problematizations.” These are the sorts of distinctions that Foucault makes in the endless interviews published after his death, distinctions that drove contemporaries of Foucault — and for that matter, scholars today — mad. Yet even those who find Foucault maddening cannot dispute his influence or the complexity of his work. 9. I refer to the following editions of Foucault in this and the next paragraph: Michel Foucault, History of Madness, ed. Jean Khalfa, trans. Jonathan Murphy (London: Routledge, 2006). Originally published in 1961 as Folie et déraison: Histoire de la folie à l’âge classique. Madness and Civilization is an abridged translation of this larger work. Foucault, The Birth of the Clinic: An Archaeology of Medical Perception, trans. A. M. Sheridan Smith (New York: Vintage Books, 1991). Originally published in 1963 as Naissance de la clinique by Presses Universitaires de France. Foucault, The Order of Things: An Archaeology of the Human Sciences (New York: Random House, 1994). Originally published in 1966 as Les mots et les choses by Éditions Gallimard. Foucault, The Archaeology of Knowledge and The Discourse on Language, trans. A. M. Sheridan Smith (London: Tavistock Books, 1972). Originally published in 1969 as L’Archéologie du savoir by Éditions Gallimard. Foucault, Discipline and Punish: The Birth of the Prison, trans. Alan

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Sheridan (New York: Random House Vintage Books, 1995). Originally published in 1975 as Surveiller et punir: Naissance de la prison by Éditions Gallimard. Foucault, The History of Sexuality, vol. 2, The Use of Pleasure, trans. Robert Hurley (New York: Vintage Books, 1990). Originally published in 1984 as L’Usage des plaisirs by Éditions Gallimard. And, Foucault, The History of Sexuality, vol. 3, The Care of the Self, trans. Robert Hurley (New York: Vintage Books, 1988). Originally published in 1984 as Le souci de soi by Éditions Gallimard. 10. See Hubert L. Dreyfus and Paul Rabinow, Michel Foucault: Beyond Structuralism and Hermeneutics (Chicago: University of Chicago Press, 1983). See also Beatrice Han, Foucault’s Critical Project: Between the Transcendental and the Historical, trans. Edward Pile (Stanford, CA: Stanford University Press, 2002). 11. Gutting, “Michel Foucault,” 2. 12. Maurice Florence, “Michel Foucault,” trans. Catherine Porter, in The Cambridge Companion to Foucault, ed. Gary Gutting (Cambridge: Cambridge University Press, 1994), 314 – 319. Foucault himself wrote this pseudonymously authored piece. 13. See Michel Foucault, Introduction to Kant’s Anthropology, ed. Roberto Nigro, trans. Roberto Nigro and Kate Briggs (Los Angeles: Semiotext, 2008); French edition published in 2008 by Libraire Philosophique J. Vrin. In France at the time of Foucault’s doctorate, students were required to write two doctoral theses. This was the so-called complementary or secondary thesis; the primary thesis was Folie et déraison (History of Madness). 14. Han, Foucault’s Critical Project, 20. 15. Foucault, Order of Things, 303 – 343. 16. Foucault, Introduction to Kant’s Anthropology, 17– 23. 17. Ibid., 22 – 23. 18. Han, Foucault’s Critical Project, 2. 19. See Foucault, “Polemics, Politics, Problematizations,” 388. 20. Ibid. 21. Ibid. 22. Ibid., 389. 23. Ibid. 24. Ibid. 25. Edward S. Casey, “The Place of Space in The Birth of the Clinic,” Journal of Medicine and Philosophy 12:351– 356 (1987); Charles E. Scott, “The Power of Medicine, the Power of Ethics,” Journal of Medicine and Philosophy 12:335 – 350 (1987). 26. I note that Hubert L. Dreyfus identifies other similarities between Heidegger and Foucault, especially with respect to Foucault’s usage of “biopower” and Heidegger’s usage of “technology.” See Dreyfus’s “On the Ordering of Things: Being and Power in Heidegger and Foucault,” in

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Michel Foucault, Philosopher, essays translated from the French and German by Timothy J. Armstrong (New York: Routledge, 1992), 80– 94. See also Jeffrey P. Bishop, “Foucauldian Diagnostics: Space, Time, and the Metaphysics of Medicine,” Journal of Medicine and Philosophy 34(4):328– 349 (2009). 27. Immanuel Kant, Critique of Pure Reason, trans. and ed. Paul Guyer and Allen W. Wood (Cambridge: Cambridge University Press, 1998), 273, A141/B180 –181. 28. Ibid., 275, A145/B184 –185. 29. Ibid., 273, A141/B180 –181. 30. Ibid. 31. Heidegger, Being and Time, 20 – 21. 32. Martin Heidegger, Kant and the Problem of Metaphysics, trans. James S. Churchill (Bloomington: Indiana University Press, 1962), 108. Originally published in 1929 as Kant und das Problem der Metaphysik. 33. See Foucault, Birth of the Clinic, 3 – 21. 34. See Foucault, The Order of Things, 250 – 302. 35. See the Diagnostic and Statistical Manual of Mental Disorders. See also John Z. Sadler, Values in Psychiatric Diagnosis (Oxford: Oxford University Press, 2005). 36. Foucault, Birth of the Clinic, xvii – xviii. 37. Ibid., xvi – xvii. 38. Ibid. 39. Ibid., xvii, 88 –106. 40. See Foucault’s enigmatic conclusion to The Order of Things, 387. 41. Foucault, Discipline and Punish, 308. 42. Simons, Foucault and the Political, 3 – 12. Simons borrows Kundera’s felicitous phrase “the unbearable lightness of being” to show that if the structures that bound us are too oppressive, we succumb to the heaviness of oppression. But likewise, if we free ourselves totally, we suffer from the lightness of life without direction or purpose or meaning. 43. Han, Foucault’s Critical Project, 174 –196. 44. Foucault, Birth of the Clinic, x. 45. Ibid., 4. 46. Pickstock, After Writing, 53. 47. Foucault, Birth of the Clinic, 5 – 6. 48. Ibid. 49. Ibid., 6 – 7. 50. Ibid., 5. 51. Ibid., 7. 52. Ibid., 7– 9. 53. Pickstock, After Writing, 63. 54. Foucault, Birth of the Clinic, 10. 55. Ibid.

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56. Ibid., 12. 57. Ibid., 13. 58. Ibid., 16. 59. Ibid., 16 – 20. Today, we hold something similar, namely, that with good politics, we will have fewer diseases because we will have medicine deployed more democratically. Good politics leads to good health; good health leads to a better body politic. 60. Ibid., 23. 61. Etymologically, “epidemic” is Greek, epi + demos, a condition above the people. 62. Foucault, Birth of the Clinic, 27. 63. Ibid., 25. 64. Pierre Charles Alexandre Louis, Researches on the Effects of Bloodletting in Some Inflammatory Disease and on the Influence of Tartarized Antimony and Vesication in Pneumonitis, trans. C. G. Putnam (Boston: Hilliard, Gray, and Co., 1836). Originally published in 1835 as Recherches sur les effets de la saignée dans quelques maladies inflammatoires, et sur l’action de l’émétique et des vésicatoires dans la pneumonie. See chapter 2 for more detail on Louis. 65. Foucault, Birth of the Clinic, 31. 66. Ibid., 33. 67. Ibid., 32. 68. Ibid., 34. 69. See Michel Foucault, “La crisis de la medicina o la crisis de la antimedicina,” Educación médica y salud 10(2):152 –170 (1976). 70. See Jeffrey P. Bishop and Fabrice Jotterand, “Bioethics as Biopolitics,” Journal of Medicine and Philosophy 31(3):205 – 212 (2006). I shall return to the theme of the relationship between politics and medicine later as I explore further Foucault’s notion of biopolitics. 71. See Louis, Researches (1836); Alfredo Morabia, “PCA Louis and the Birth of Clinical Epidemiology,” Journal of Clinical Epidemiology 49(12):1327–1333 (1996); Jan P. Vanbroucke, “Evidence-Based Medicine and ‘Médecine d’Observation,’ ” Journal of Clinical Epidemiology 49(12):1335 – 1338 (1996); and Alvan R. Feinstein, “Two Centuries of Conflict-Collaboration between Medicine and Mathematics,” Journal of Clinical Epidemiology 49(12):1339 –1343 (1996). 72. Foucault, Birth of the Clinic, 38 – 52. See also Bishop, Rosemann, and Schmidt, “Fides Ancilla Medicinae”; and Bishop, “Biopolitics, Terri Schiavo, and the Sovereign Subject of Death.” 73. Dale C. Smith claims that every few decades medicine engages a crisis and that at these points medicine has to enlist an ancient source to claim for its own renewal. See his “The Hippocratic Oath and Modern Medicine.” 74. Foucault, Birth of the Clinic, 55.

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75. Ibid., 54 – 57. 76. Ibid., 56. 77. Ibid., 55. 78. Ibid. 79. Ibid., 62. 80. Ibid., 64. Italics in original. 81. Ibid., 66. 82. Ibid., 70. Here Foucault is quoting Antoine Francois de Fourcroy, Rapport à la convention au nom des Comités de salut public et d’instruction publique, 7 Frimaire Year III, 3. 83. Foucault, Birth of the Clinic, 84. 84. Ibid., 90. 85. See ibid. 86. Ibid., 96. Italics in original. 87. Ibid., 107. Foucault is here quoting Jean-Nicolas Corvisar, preface to the French translation of Auenbrugger, Nouvelle méthode pour reconnaître les maladies internes de la poitrine (Paris, 1808), vii – viii. 88. Foucault, Birth of the Clinic, 113. 89. I use this phrase in a way different from Thomas Nagel, The View from Nowhere (Oxford: Oxford University Press, 1986). Nagel, of course, uses this idea to suggest the uncanny ability that humans have to achieve perspectives not bounded by their own perspective, as bounded by their sense perception or theoretical position. We can abstract from our limited view and take on another, as if we stood nowhere. I use it here to mean that while we have the ability to abstract from the particularities of our limited perception or ability to think, we nonetheless do not have a view from nowhere. 90. Foucault, Birth of the Clinic, (1991), 115. 91. Ibid., 115. 92. Ibid. Italics in original. 93. Ibid. Foucault is quoting Bouillaud’s Philosophie médicale (Paris, 1831), 244. 94. Foucault, Birth of the Clinic, 118 –119. 95. Ibid., 118. Foucault cites François Double, Séméiologie générale, 1:79. 96. Foucault, Birth of the Clinic, 126. 97. Ibid., 125. 98. Ibid., 126. 99. Ibid., 89. 100. Abraham Flexner, Medical Education in the United States and Canada (Washington, DC: Science and Health Publications, 1910), 55. 101. Foucault, Birth of the Clinic, 126. 102. Ibid. 103. Ibid.

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104. Ibid., 136 –137. 105. Ibid. 106. Ibid., 140. Italics in original. 107. Ibid., 141. 108. Ibid., 144. 109. Ibid. 110. Ibid., 146. 111. Ibid. 112. Ibid., 149 –154. 113. Ibid., 155. 114. Ibid., 158. 115. These are tests to distinguish diseased from healthy organs, today with the use of a stethoscope. In whispered pectoriloquy, the patient is asked to whisper “99” as the physician listens to the chest. When the physician listens over the diseased portion of the lung, the words “99” are no longer heard as a whisper but reverberate loudly. Egophony is a similar technique, in which the patient is asked to repeat the letter “e” as the physician listens to the lung. Again, when the physician listens over the diseased portion of the lung, the “e” sound changes to an “a” sound. In this sense, the disease speaks. 116. Foucault, Birth of the Clinic, 162. 117. Ibid., 159 –162. 118. Ibid., 165. 119. Ibid., 170. The reference to Aristotle is from Metaphysics, in Aristotle: Complete Works, edited by Jonathan Barnes and translated by W. D. Ross (Princeton, NJ: Princeton University Press, 1984), 1584/1003a14. Here Aristotle states, “for the knowledge of anything is universal.” 120. Foucault, Birth of the Clinic, 172. 121. Ibid., 174 –175. 122. Ibid. 123. See Linda K. Emanuel, “Reexamining Death: The Asymptotic Model and a Bounded Zone Definition,” Hastings Center Report 25(4):27– 35 (1995). 124. Foucault, Birth of the Clinic, 141. Chapter 2. Maturing the Clinic 1. See Jeffrey Berlant, Profession and Monopoly: A Study of Medicine in the United States and Great Britain (Berkeley: University of California Press, 1975). 2. See Larry Trivieri, The American Holistic Medical Association Guide to Holistic Health: Healing Therapies for Optimal Wellness (New York: Warner Books, 2001). See also William Collinge, The American Holistic Health Association Complete Guide to Alternative Medicine (New

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York: John Wiley and Sons, 1997); Andrew Weil, Natural Health, Natural Medicine: The Complete Guide to Wellness and Self-Care for Optimum Health (New York: Houghton Mifflin, 2004); and John Diamond, Holism and Beyond: The Essence of Holistic Medicine (Bloomingdale, IL: Enhancement Books, 2001). 3. See Katharine Young, Presence in the Flesh: The Body in Medicine (Cambridge, MA: Harvard University Press, 1997). 4. Ibid. 5. Ibid. 6. Berlant, Profession and Monopoly. 7. Flexner, Medical Education, 3 –19. 8. Essential fevers were fevers where no prior cause could be found. This diagnosis was used into the twentieth century, and even in my own medical training toward the end of the twentieth century, several older professors of mine would speak of essential fevers. There is, however, one diagnosis that continues to use the term “essential,” and that is essential hypertension. As noted in chapter 1, the distinction between essential disorders and others was whether an anatomic lesion existed or a physiological causal mechanism. 9. See Kathryn Montgomery, How Doctors Think: Clinical Judgment and the Practice of Medicine (New York: Oxford University Press, 2006). 10. See J. Rosser Matthews, Quantification and the Quest for Medical Certainty (Princeton, NJ: Princeton University Press, 1996). See also EvidenceBased Medicine Working Group, “Evidence-Based Medicine: A New Approach to Teaching the Practice of Medicine,” JAMA 268:2420– 2425 (1992). 11. See Vandenbroucke, “Evidence-Based Medicine and Médicine d’Observation.” 12. Claude Bernard, An Introduction to the Study of Experimental Medicine, trans. Henry Copley Greene (New York: Dover Publications, 1957), 99. 13. Foucault, The History of Sexuality, 1:139 –140. 14. Simon Oliver, Philosophy, God, and Motion (London: Routledge, 2005). 15. Ibid., 49. 16. Ibid., 50. 17. Ibid., 51. 18. Ibid., 51– 52. 19. Ibid., 154. 20. Ibid., 168 –169. 21. Marie François Xavier Bichat, Physiological Researches on Life and Death, trans. F. Gold, Physiological Psychology Series (Significant Contributions to the History of Psychology), ed. Daniel N. Robinson (Washington, DC: University Publications of America, 1978). A reprint of the 1827 translation published by Richardson and Lord, Boston. Originally published

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as Recherches physiologiques sur la vie et la mort. See also Geoffrey Sutton, “Physical and Chemical Path to Vitalism,” Bulletin of the History of Medicine 54:53 – 71 (1984). Bichat’s book supplies elaborate descriptions of his experiments, including vivisection and the killing of various organs in the bodies of dogs and frogs, and of how the disruption in one organ led to the demise of other organs, including descriptions of placing stopcocks in blood vessels and in trachea of animals and turning them such that the flow of blood or air (respectively) is halted. 22. Bichat, Physiological Researches, 9 –10. 23. Sutton, “Physical and Chemical Path,” 69 – 71. 24. Ibid., 71. 25. For these series of experiments, see Bichat, Physiological Researches, 176– 334. 26. Bernard, Introduction, 67– 68. 27. Ibid., 27. 28. Ibid., 33. 29. Ibid., 48 – 52. 30. Ibid., 80. 31. Ibid., 87. 32. Ibid., 82. 33. Ibid., 113. 34. Ibid., 93. 35. Ibid., 93. 36. Ibid., 87. 37. Ibid., 95. 38. Ibid., 111. 39. See Paul Bert, “Claude Bernard,” in Bernard, Introduction, xiii – xix. “Thanks to him, the scientific method, respect for whose laws leads to certainty in the sciences of dead matter, assumed equal authority in the sciences of living matter” (xiv). That is because Bernard saw no difference in the living and nonliving (dead) material. 40. Bernard, Introduction, 82. 41. Ibid., 88. 42. Ibid., 94. 43. Ibid., 81– 82. 44. Ibid., 99. 45. Ibid., 101. 46. Ibid., 104. 47. Ibid., 100 –101. 48. Ibid., 100. 49. Ibid., 100. 50. Bernard does not clarify which Grand Duke he refers to, but most likely it is Cosimo I de’ Medici.

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51. Ibid., 100. 52. Ibid., 101. 53. Ibid., 102. 54. Ibid., 101–102. 55. Ibid., 102. 56. Ibid., 102. 57. Ibid., 102 –103. 58. Ibid., 103. 59. Ibid., 103. 60. Ibid., 103. 61. On normal physiology, see ibid., 105 – 112; on pathological physiology, 112 – 115. 62. Ibid., 67. 63. Sebastian Normandin, “Claude Bernard and An Introduction to the Study of Experimental Medicine: ‘Physical Vitalism,’ Dialectic, and Epistemology,” Journal of the History of Medicine and Allied Sciences 62(4):495 – 528 (2007). 64. Bernard, Introduction, 67. 65. Arthur C. Guyton and John E. Hall, Textbook of Medical Physiology, 11th ed. (New York: W. B. Saunders, 2006), 3. 66. See I. Bernard Cohen, “Foreword,” in Bernard, Introduction. Cohen quotes from a translation by John F. Fulton, Selected Readings in the History of Physiology (Springfield, IL: Charles C. Thomas, 1930), 308. 67. Bernard, Introduction, 79. 68. See Vandenbroucke, “Evidence-Based Medicine and Médicine d’Observation”; Morabia, “PCA Louis and the Birth of Clinical Epidemiology”; Evidence-Based Medicine Working Group, “Evidence-Based Medicine.” 69. Vandenbroucke, “Evidence-Based Medicine and Médicine d’Observation”; Feinstein, “Two Centuries of Conflict-Collaboration.” 70. Alfredo Morabia, “Claude Bernard Was a Nineteenth-Century Proponent of Medicine Based on Evidence,” Journal of Clinical Epidemiology 59(11):1150 – 1154 (2006). Morabia’s claim that Bernard was a proponent of EBM may betray the need of EBM for the support of basic scientists such as Bernard, whose standing as a scientist was unassailable in the history of medicine. 71. Ibid., 1153. 72. “Claude Bernard on Medical Statistics” (Editorial), British Medical Journal 2:638 – 639 (1865). See also Matthews, Quantification. 73. Oddly, Morabia counts the negative and the positive things that Bernard has to say about statistics, as part of the argument that Bernard is not as opposed to statistics as he has often been made out to be. 74. Bernard, Introduction, 70.

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75. Ibid., 137. 76. Ibid., 134 –135. 77. Feinstein, “Two Centuries of Conflict-Collaboration,” 1340 –1341; see also Michael Cowles, Statistics in Psychology: An Historical Perspective, 2nd ed. (Mahwah, NJ: Lawrence Erlbaum Associates Publishers, 2001), 49 – 50. 78. Bernard, Introduction, 136. 79. For a very good analysis of the history of determinism in the eighteenth and nineteenth centuries, see Ian Hacking, “Nineteenth Century Cracks in the Concept of Determinism,” Journal of the History of Ideas 44:455 – 475(1983). 80. Louis, Researches, 1– 55. 81. Matthews, Quantification, 18 –19. 82. Ibid., 21. 83. Ibid., 18 –19. 84. Louis, Researches, 56. 85. Matthews, Quantification, 20. 86. See Samuel Gorovitz and Alasdair MacIntyre, “Toward a Theory of Medical Fallibility,” Hastings Center Report 5(6):13 – 23 (1975). 87. In fact, James Jackson commissioned the English translation of Louis’s Recherches shortly after its publication in 1835. See Louis, Researches. See also Feinstein, “Two Centuries of Conflict-Collaboration,” 1340, and Flexner, Medical Education, 9. 88. Matthews, Quantification, 64. 89. Evidence-Based Medicine Working Group, “Evidence-Based Medicine,” 1240. 90. Foucault, Birth of the Clinic, 33. 91. John Milbank, Theology and Social Theory: Beyond Secular Reason, 2nd ed. (London: Wiley-Blackwell, 2006), 103. 92. Parts of this section appear in Jeffrey P. Bishop, “Biopsycho sociospiritual Medicine and Other Political Schemes,” Christian Bioethics 15(3):254 – 276 (2009). 93. See Theodore M. Porter, The Rise of Statistical Thinking, 1820 –1900 (Princeton, NJ: Princeton University Press, 1986), and his Trust in Numbers: The Pursuit of Objectivity in Science and Public Life (Princeton, NJ: Princeton University Press, 1995); Sarah Igo, The Averaged American: Surveys, Citizens, and the Making of a Mass Public (Cambridge, MA: Harvard University Press, 2007); Alain Desrosières, The Politics of Large Numbers: The History of Statistical Reasoning, trans. Camille Naish (Cambridge, MA: Harvard University Press, 1998), originally published in 1993 as La politique des grands nombres: Histoire de la raison statistique by Éditions la Découverte; and Milbank, Theology and Social Theory.

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94. Explicit examples of this will become clear in chapter 8, when I examine the various inventories created to measure grief and religious coping with some sort of numerical score. And, as I will argue, it is no less clear even for Elisabeth Kübler-Ross, whose On Death and Dying describes the state of the care of the dying, and for George Fitchett, whose Spiritual Assessment in Pastoral Care: A Guide to Selected Resources (Decatur, GA: Journal of Pastoral Care Publications, 1993) seeks a descriptive spiritual assessment. Both are statistical in their use of numerical methods, as well as in an older sense described by Theodore Porter. 95. Porter, Trust in Numbers, 23. 96. Desrosières, Politics of Large Numbers, 19. Italics are in the original. 97. Foucault, Birth of the Clinic, 23. 98. Cowles, Statistics in Psychology, 49 – 50. 99. See Thomas Hobbes, Leviathan, ed. Richard Tuck (Cambridge: Cambridge University Press, 1996). Originally published in 1651. 100. See Cowles, Statistics in Psychology, and Porter, Rise of Statistical Thinking. 101. See Porter, Rise of Statistical Thinking, 25. 102. Ibid., 23 – 39. 103. Ibid., 52 – 53; Cowles, Statistics in Psychology, 18. 104. This distinction between social laws and free will is noted in nineteenth-century criminology as well. See David G. Horn, “The Norm Which Is Not One: Reading the Female Body in Lombroso’s Anthropology,” in Deviant Bodies: Critical Perspectives on Difference in Science and Popular Culture, ed. Jennifer Terry and Jacqueline Urla (Bloomington: Indiana University Press, 1995), 109 –128. 105. Porter, Rise of Statistical Thinking, 47. 106. Ibid., 48. 107. Ibid., 56. 108. Matthews, Statistics in Psychology, 29. 109. Porter, Rise of Statistical Thinking, 60 – 70. 110. Herbert Spencer, Social Statics, Abridged and Revised (Edinburgh: Williams and Norgate, 1892), 203. 111. Émile Durkheim, Suicide: A Sociological Study, trans. John A. Spaulding and George Simpson (Glencoe, IL: Freepress, 1951). 112. Cowles, Statistics in Psychology, 50 – 51. 113. See especially Donald A. MacKenzie, Statistics in Britain 1865 –1930 (Edinburgh: Edinburgh University Press, 1981). 114. Porter, Rise of Statistical Thinking, 130. 115. Ibid., 133. 116. Cowles, Statistics in Psychology. See also MacKenzie, Statistics in Britain.

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117. Buck v. Bell 274 US 200 (1927). 118. Porter, Rise of Statistical Thinking, 133. For the primary source, see Francis Galton, Inquiries into Human Faculty and Its Development (London: Macmillan, 1883), 154. 119. Porter, Rise of Statistical Thinking, 143. 120. Cowles, Statistics in Psychology. 121. See especially Donald Polkinghorne, Methodology for the Human Sciences: Systems of Inquiry (Albany: State University of New York Press, 1983). 122. Ibid., 16 – 57. 123. Flexner, Medical Education. 124. Ibid., 3 –19. 125. Ibid., 21. 126. Ibid., 25. 127. Ibid., 53. 128. Ibid. 129. Ibid. By “empiric,” Flexner means the person who observes systematically, akin to the practitioner of contemporary EBM or Louis’s médicine d’observation. By “scientist,” Flexner means a person who does experimental physiology and medicine. 130. Ibid., 55. 131. Ibid., 53.

Transition One 1. See Milbank, “Transcendality of the Gift,” 354. 2. In fact, the term used by researchers for animals that are to be killed is “sacrifice.” 3. See Richard A. Lee, Jr., Science, the Singular, and the Question of Theology (New York: Palgrave, 2002). Lee refers to the “disappearance of the singular before its rational ground” (3) and notes that “objects do not go into their concepts without remainder” (118). 4. Foucault, History of Sexuality, 1:101. 5. See especially Burtt, Metaphysical Foundations of Modern Physical Science (Amherst, NY: Humanity Books, 1999). By “modern” I mean the natural sciences as they began to emerge out of early modern philosophies. 6. Krakauer, “Prescriptions,” 535. 7. Ibid. 8. MacIntyre, After Virtue, 224. 9. I am thankful to Philipp W. Rosemann for the insights of these questions.

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Chapter 3. The Machinations of Life 1. See Philippe Ariès, The Hour of Our Death, trans. Helen Weaver (New York: Alfred A. Knopf, 1981). See also his Western Attitudes toward Death, trans. Patricia M. Ranum (Baltimore: Johns Hopkins University Press, 1974). 2. See Callahan, The Troubled Dream of Life, 11– 21. 3. Ibid.; see also Bishop, Rosemann, and Schmidt, “Fides Ancilla Medicinae.” 4. Foucault, Birth of the Clinic, 124 –148. 5. Bernard, Introduction, 104. 6. See Guyton and Hall, Textbook of Medical Physiology, 3; Bichat, Physiological Researches, 9 –10. 7. See Anita Guerrini, Experimenting with Humans and Animals: From Galen to Animal Rights (Baltimore: Johns Hopkins University Press, 2003), 114 –124. 8. See Bernard, Introduction, and chap. 2 in this volume. 9. J. L. Whittenberger, W. T. Affeldt, W. T. Goodale, and S. J. Sarnoff, “Mechanics of Breathing in Relation to Manual Methods of Artificial Respiration,” Journal of Applied Physiology 4(6):476 (1951). 10. Respiration tends to refer to both functions of the lung — oxygenation and removal of carbon dioxide. Ventilation usually refers to the exchange of carbon dioxide. 11. H. Schwerma, A. C. Ivy, W. L. Burkhardt, and A. F. Thometz, “Resuscitation from Obstructive Asphyxia,” American Journal of Physiology 156(2):145 (1949). 12. Note that these authors use the term “end-point” differently from its current usage. 13. Schwerma et al., “Resuscitation,” 145. 14. Ibid., 146. 15. See Susan E. Lederer, “The Controversy over Animal Experimentation in America, 1880 –1914,” in Vivisection in Historical Perspective, ed. Nicolaas A. Rupke (London: Croom Helm, 1987), 236 – 258. Lederer notes that this group was created by powerful researchers at major medical schools to weaken the critique of medical research by animal protection groups. 16. Schwerma et al., “Resuscitation,” 146. 17. Ibid. 18. Ibid. 19. Ibid. 20. Ibid., 147. 21. Manual ventilation refers to attempts to ventilate the subject of the experiment by manipulation of the dog’s body without the assistance of machines.

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22. Archer S. Gordon, D. C. Fainer, and A. C. Ivy, “Artificial Respiration: A New Method and a Comparative Study of Different Methods in Adults,” JAMA 144(17):1455 (1950). 23. Ibid., 1457. 24. Ibid. 25. Ibid. 26. See Max S. Sadove, Archer S. Gordon, John T. Nelson, and A. C. Ivy, “Barbiturate-Curare-Induced Apnea for Artificial Respiration Studies on Normal Adults, I,” Journal of Applied Physiology 4(6):403 – 407 (1950). 27. See Archer S. Gordon, John E. Affeldt, Max S. Sadove, Frank Raymon, James L. Whittenberger, and A. C. Ivy, “Air-Flow Patterns and Pulmonary Ventilation during Manual Artificial Respiration on Apneic Normal Adults, II,” Journal of Applied Physiology 4(6):408 – 420 (1950). 28. See Archer S. Gordon, Oldrich Prec, Harold Wedell, Max S. Sadove, Frank Raymon, John T. Nelson, and A. C. Ivy, “Circulatory Studies during Artificial Respiration on Apneic Normal Adults, III,” Journal of Applied Physiology 4(6):421– 438 (1950). 29. See Archer S. Gordon, Frank Raymon, Max S. Sadove, Harold Wedell, and A. C. Ivy, “Energy Expenditure of Operators during Manual Artificial Respiration, IV,” Journal of Applied Physiology 4(6):439 – 446 (1950). 30. See Archer S. Gordon, Shirley Star, Fred Meier, Creighton Hale, and A. C. Ivy, “Pedagogical and Performance Factors of Manual Artificial Respiration with Naval Personnel, V,” Journal of Applied Physiology 4(6):447– 457 (1950). 31. These means of evaluating the success of the intervention are usually termed end points. As noted above, the experiments of Schwerma et al. had a rather idiosyncratic use of this term. Here, by “end point” I mean the point at which success or failure of the experiment is defined at the end of the entire experiment. 32. William B. Kouwenhoven and William R. Milnor, “Treatment of Ventricular Fibrillation Using a Capacitor Discharge,” Journal of Applied Physiology 7(3):253 – 257 (1954). See also William R. Milnor, G. Guy Knickerbocker, and William B. Kouwenhoven, “Cardiac Responses to Transthoracic Capacitor Discharges in the Dog,” Circulation Research 6:60 – 65 (1958); William B. Kouwenhoven, James R. Jude, and G. Guy Knickerbocker, “Closed-Chest Cardiac Massage,” JAMA 173(10):1064 – 1067 (1960); and James R. Jude, William B. Kouwenhoven, and G. Guy Knickerbocker, “Cardiac Arrest: Report of Application of External Cardiac Massage on 118 Patients,” JAMA 178(11):1063 – 1070 (1961). 33. See especially Kouwenhoven and Milnor, “Treatment of Ventricular Fibrillation”; Milnor, Knickerbocker, and Kouwenhoven, “Cardiac Responses”; and Kouwenhoven, Jude, and Knickerbocker, “Closed-Chest Cardiac Massage.”

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34. Kouwenhoven and Milnor, “Treatment of Ventricular Fibrillation.” 35. Ibid., 253. 36. Kouwenhoven, Jude, and Knickerbocker, “Closed-Chest Cardiac Massage.” 37. Ibid., 1064. 38. Ibid. “Thoracotomy” means “opening the chest.” Direct cardiac massage and directly shocking the heart muscle with DC electricity were thought to be better than closed chest compressions of the heart and shocks applied to the external chest wall. 39. Ibid., 1066. 40. See the essays in Richard D. French, ed., Anti-vivisection and Medical Science in Victorian Society (Princeton, NJ: Princeton University Press, 1975), and in Vivisection in Historical Perspective, ed. Nicolaas A. Rupke (London: Croom Helm, 1987). 41. See the essays in French, Anti-vivisection; see also Lederer, “Controversy.” 42. See Paul Elliott, “Vivisection and the Emergence of Experimental Physiology in Nineteenth-Century France,” in Vivisection in Historical Perspective, ed. Rupke, 48 – 77. In the same volume, see also Diana Manuel, “Marshall Hall (1790 – 1857): Vivisection and the Development of Experimental Physiology,” 78 –104; Patrizia Guarnieri, “Moritz Schiff (1823 – 96): Experimental Physiology and Noble Sentiment in Florence,” 105 – 120; Ulrich Trohler and Andreas-Holger Maehle, “Anti-vivisection in NineteenthCentury Germany and Switzerland: Motives and Methods,” 149 –187; Nicolaas Rupke, “Pro-vivisection in England in the Early 1880s: Arguments and Motives,” 188 – 213; and Lennart Bromader, “The Vivisection Debate in Sweden in the 1880s,” 214 – 235. See also Lederer, “Controversy.” 43. See especially Lederer, “Controversy.” 44. See William B. Cannon, Medical Control of Vivisection (Chicago: American Medical Association, 1910). 45. See especially Michael Lynch, “Sacrifice and the Transformation of the Animal Body into a Scientific Object: Laboratory Culture and Ritual Practice in the Neurosciences,” Social Studies of Science 18:265– 289 (1988). See also Kristin Asdal, “Subjected to Parliament: The Laboratory of Experimental Medicine and the Animal Body,” Social Studies of Science 38(6):899 – 917 (2008). 46. See, for example, R. M. Kenedi, J. M. Courtney, J. D. S. Gaylor, and T. Gilchrist, eds., Artificial Organs (London: University Park Press, 1977). 47. Callahan, Troubled Dream, 73 – 74. 48. Robert Zussman, Intensive Care: Medical Ethics and the Medical Profession (Chicago: University of Chicago Press, 1992), 19. 49. Ibid., 19 – 20.

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50. Ibid. Zussman takes this list from National Institutes of Health, Consensus Development Conference Summary 4:7 (1983). 51. See Mark Hilberman, “The Evolution of Intensive Care Units,” Critical Care Medicine 4(3):159 – 163 (1975). See also Henrik H. Bendixen and John M. Kinney, “History of Intensive Care,” in Manual of Surgical Intensive Care, ed. John M. Kinney, Henrik H. Bendixen, and Samuel R. Powers (Philadelphia: W. B. Saunders, 1977), 3. 52. See John M. Kinney and Henrik H. Bendixen, “Administration and Operating Procedures,” in Manual of Surgical Intensive Care, ed. Kinney, Bendixen, and Powers, 41. See also Joseph M. St. Ville, “Physiological Monitoring of Cardiac and Critically Ill Surgical Patients,” Surgical Clinics of North America 47(1):37– 47 (1967); L. A. Boeré, “Monitoring in Surgery and Medicine,” Acta Anaesthesiologica Scandinavica Supplement 25:135 –143 (1966); and J. C. Sibley, “Operation and Equipment of the I.C.U.,” Applied Therapeutics 9(4):356 – 361 (1967). 53. See Hilberman, “Evolution”; see also Bendixen and Kinney, “History.” 54. See R. I. Mason, Preoperative and Postoperative Care (Philadelphia: W. B. Saunders, 1937), 108. See also A. M. Harvey, “Neurosurgical Genius: Walter Edward Dandy,” Johns Hopkins Medical Journal 135:358 – 368 (1974); and Hilberman, “Evolution.” 55. See J.W. Barr, “Medical Technology as Applied in Circulatory Shock,” American Journal of Medical Technology 33(1):21– 27 (1967). See also R. M. Hardaway, P. M. James, R.W. Anderson, C. E. Bredenberg, and R. L. West, “Intensive Study and Treatment of Shock in Man,” JAMA 199(11):779 – 790 (1967); Sibley, “Operation,” 356; Kinney and Bendixen, “History”; and St. Ville, “Physiological Monitoring.” 56. See F. R. Edwards, J. C. Richardson, and P. M. Ashworth, “Experience with an Intensive-Care Ward,” Lancet 1(7390):855 – 857 (1965). See also John M. Kendall, “The ICU and the Internist,” Applied Therapeutics 9(4):345 – 347 (1967); J. Thompson, “The ICU and the Nurse,” Applied Therapeutics 9(4):353 – 355 (1967); W. I. Hay, “The ICU and the General Practitioner,” Applied Therapeutics 9(3):351– 352 (1967); A. P. Muir, “The ICU and the Medical Staff,” Applied Therapeutics 9(3):341– 343 (1967); G. R. MacFarlane, “The I.C.U. and the Surgeon,” Applied Therapeutics 9(4):348 – 350 (1967); and A. R. Hunter, “Intensive Care as a Specialty,” Lancet 1(7500):1151–1153 (1967). 57. See Per Erik Wiklund, “Design of a Recovery Room and Intensive Care Unit,” Anesthesiology 26(3):667– 674 (1965); and D.V. Bates, “Organization of Intensive Care Units: Results in Cases of Respiratory Failure,” Anesthesiology 25(2):199 – 202 (1964). See also “Intensive Therapy and Care” (editorial); Stanley Mason, “The Scope and Organization of an Intensive Therapy Unit in a London Hospital,” Acta Anaesthesiologica Scandinavica

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Supplement 23:117–122 (1966); Eliot Corday and David Littaurer, “Guidelines for the Design and Operation of a Coronary Care Unit,” Hospitals 40(3):77– 80 (1966); John M. Kinney, “The Intensive-Care Unit,” Hospital Topics 45(4):89– 99 (1967); E. Jones, “The Organization and Administration of Intensive Patient Care,” Postgraduate Medical Journal 43(498):339 – 347 (1967); and J. S. Robinson, “The Design and Function of an Intensive Care Unit,” British Journal of Anaesthesiology 38(2):132 –142 (1966). 58. By “technological stance,” I follow Heidegger’s meaning in his Question Concerning Technology. 59. See Heidegger, Question Concerning Technology. 60. See Kaufman, And a Time to Die. 61. Zussman, Intensive Care, 32. 62. Ibid., 36. 63. Ibid., 37. 64. Ibid. 65. See Callahan, Troubled Dream. 66. See Michel Foucault, “The Confession of the Flesh,” in Power/ Knowledge: Selected Interviews & Other Writings 1972 – 1977, ed. Colin Gordon (New York: Pantheon Books, 1977), 194. 67. Ibid., 194 –195. 68. Ibid., 195. 69. Ibid. 70. See Kaufman, And a Time to Die. 71. Callahan, Troubled Dream, 41. 72. Ibid. 73. Ibid. 74. Ibid. 75. Ibid., 16 –17. 76. I am thankful to my colleague Elizabeth Heitman for her insights on this idea and for our discussions. 77. See Jeffrey P. Bishop, “Rejecting Medical Humanism,” Journal of Medical Humanities 29(1):15 – 25 (2008). 78. Burtt, Metaphysical Foundations of Modern Physical Science, 104. 79. Foucault, History of Sexuality, 1:136.

Chapter 4. Embracing Death 1. Sherwin B. Nuland, How We Die: Reflections on Life’s Final Chapter (New York: Vintage Books, 1995). 2. Ibid., 8. 3. Ibid., 254. Nuland himself does not subscribe to this common view.

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4. See Bishop, “Biopolitics, Terri Schiavo, and the Sovereign Subject of Death.” See also Giorgio Agamben, Homo Sacer: Sovereign Power and Bare Life, trans. Daniel Heller-Roazen (Stanford, CA : Stanford University Press, 1998). Originally published in 1995 as Homo sacer: Il potere sovrano e la nuda vita by G. Einaudi editore s.p.a. 5. Robert Veatch, Death, Dying, and the Biological Revolution: Our Last Quest for Responsibility (New Haven, CT: Yale University Press, 1976). 6. Ibid., 3. 7. See Veatch, Death, Dying, 77–163. 8. See Louis Janssens, “Ontic Evil and Moral Evil,” in Readings in Moral Theology: Moral Norms in the Catholic Tradition, vol. 1, ed. Charles Curran and Richard A. McCormick (New York: Paulist Press, 1979), 40 – 93. Originally published in 1972 in Louvain Studies 4. 9. Veatch, Death, Dying, 5. 10. Pius XII, “The Prolongation of Life,” in Death, Dying, and Life, ed. Dennis J. Horan and David Mall (Washington, DC: University Publications of America, 1977), 281– 287. Statement given at an International Congress of Anesthesiologists in 1957. 11. Veatch, Death, Dying, 5; see also Eric J. Cassell, “Permission to Die,” Bioscience 23:475 – 478 (1973). 12. John Paul II, Evangelium Vitae, 4/no. 2. 13. Veatch, Death, Dying, 168 –169; see also Callahan, Troubled Dream of Life. 14. Callahan, Troubled Dream, 178–179. Here I am specifically thinking of recent statements by the Catholic Church’s Congregation for the Doctrine of the Faith in which artificial nutrition and hydration are required, whereas they seem to have been thought extraordinary care in recent history. See Congregation for the Doctrine of the Faith, “Responses to Certain Questions of the United States Conference of Catholic Bishops Concerning Artificial Nutrition and Hydration,” Vatican Press Office Bulletin, September 14, 2007. 15. See Albert R. Jonsen’s historical analysis in The Birth of Bioethics (New York: Oxford University Press, 1998), 331– 338. On the importance of paternalism and its rejection, see Gerald Dworkin, “Paternalism,” The Monist 56:64 – 89 (1972); see also Bernard Gert and Charles M. Culver, “Paternalistic Behavior,” Philosophy and Public Affairs 6:45 – 57 (1976). On the centrality of choice as it relates to technology, see Veatch, Death, Dying; see also Stanley Reiser, Medicine and the Reign of Technology (Cambridge: Cambridge University Press, 1978). See also Joseph Fletcher, Morals and Medicine (Boston: Beacon Press, 1954), especially the preface to the 1960 reprint, where he emphasizes the pressures on morality that technology exerts.

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16. L. J. Blackhall, “Must We Always Use CPR?” New England Journal of Medicine 317(20):1281–1285 (1987). 17. See Elliott Spitzer’s opinion on whether New York statute requires physicians to deploy CPR even when there is no hope of its working. Spitzer, New York Attorney General Opinion No. 2003-F1, 2003. 18. For a critique of this sentiment, see Jeffrey P. Bishop, Kyle Brothers, Joshua E. Perry, and Ayesha Ahmad, “Reviving the Conversation around CPR/DNR,” American Journal of Bioethics 10(1):61– 67 (2010). 19. Julie D. Cantor, “Conscientious Objection Gone Awry — Restoring Selfless Professionalism in Medicine,” New England Journal of Medicine 360(15):1484 –1485 (2009). 20. See Foucault, History of Sexuality, 1:136. 21. Parts of this section have been published in a substantially different form. See Jeffrey P. Bishop, “Euthanasia, Efficiency, and the Historical Distinction between Killing a Patient and Allowing a Patient to Die,” Journal of Medical Ethics 32:220 – 224 (2006). 22. See Howard Brody, “Causing, Intending, and Assisting Death,” Journal of Clinical Ethics 4:112–117 (1993), and Timothy Quill, “The Ambiguity of Clinical Intentions,” New England Journal of Medicine 329:1039 –1040 (1993). See also the arguments for the plaintiffs in the Supreme Court cases Vacco v. Quill 521 U.S. 793 (1997) and Washington v. Glucksberg 521 U.S. 702 (1997). 23. Daniel P. Sulmasy, “Killing and Allowing to Die: Another Look,” Journal of Law, Medicine, and Ethics 26(1):56 – 57 (1998). 24. Ibid., 58. 25. Ibid., 59. 26. Ibid. 27. Ibid. Sulmasy here cites M. Bratman, Intention, Plans, and Practical Reason (Cambridge, MA: Harvard University Press, 1987), 4 – 5, 110. 28. Sulmasy, “Killing and Allowing to Die,” 60. Sulmasy uses the designation “Killing*” as a means of distinguishing the traditional definition of killing from other, more recent uses of the term “killing.” 29. In an older, premodern understanding of causes, Thomas Aquinas held that human action (not choice), properly understood, was identical with the domain of moral actions. (See Ralph McInerny, Aquinas on Human Action: A Theory of Practice [Washington, DC: Catholic University Press, 1992], 3.) Intention is an act of the human will and is the final cause of an action; we intend that for the sake of which the action is to be taken, namely, the good desired. Yet in terms of the causation of an action, intending something is not sufficient for the action to take place. Thomas held that the intellect must also be engaged to bring the desired end into being. One judges proportionately the myriad of possible means that could achieve the end and weighs the likelihood of success of the possible means, as well as the

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proportionality of the means to achieving the end. Thus, the will intends the final cause, the good. Yet the will is directed not merely toward the terminus but also toward the way in which the act participates in a telos outside of the immanent effect desired. The intellect weighs and rationally inquires as to the possible material and efficient means to bring the intended good into being as a real state of affairs in the world. (See Thomas Aquinas, Summa Theologica, Ia– IIae, trans. Fathers of the English Dominican Province [Westminster, MD: Christian Classics, 1949], 628 – 629/question 9, article 1.) The material cause is the material means engaged to bring about the action, and the efficient cause is the instrumental means to achieve the end in the world. 30. See Quill, “Ambiguity.” See also Brody, “Causing, Intending”; Timothy E. Quill, Bernard Lo, and Daniel W. Brock, “Palliative Options of Last Resort: Comparison of Voluntarily Stopping Eating and Drinking, Terminal Sedation, Physician-Assisted Suicide, and Voluntary Active Euthanasia,” JAMA 278(23):2099 – 2104 (1997); and A. Alpers and Bernard Lo, “Does It Make Clinical Sense to Equate Terminally Ill Patients Who Require LifeSustaining Interventions with Those Who Do Not?” JAMA 277:1705 –1708 (1997). 31. Quill, “Ambiguity”; Brody, “Causing, Intending.” 32. Quill, “Ambiguity.” 33. Daniel P. Sulmasy and Edmund P. Pellegrino (“The Rule of Double Effect: Clearing Up the Double Talk,” Archives of Internal Medicine 159:545 – 550 [1999]) offer a very good analysis of this rendering of intention as articulated by Quill. They point out that one’s intentions cannot be to alleviate the patient’s anxiety by giving him a lethal cocktail to kill himself. That would be like treating the anxiety of a patient who is angry enough to kill his boss by giving him the means to kill the boss, thinking that this action will calm him down. However, my point is that Sulmasy and Pellegrino are using the word “intention” in the more robust traditional sense, but Quill is using it in the contemporary sense of choice/decision. 34. I think that my insight that the metaphysics of medicine informs the thinness of decision in contemporary formulations can be applied more broadly. For instance, Alan Donagan (“Moral Absolutism and the Double Effect Exception: Reflections on Joseph Boyle’s ‘Who is Entitled to Double Effect?’ ” Journal of Medicine and Philosophy 16:495 – 509 [1991]) proposes that we ask ourselves if “by some fluke or miracle, the action does not have the effect you foresee . . . whether you then consider your plan carried out and your purpose accomplished” (496). If a physician writes a prescription for a cocktail that will kill the patient, and the patient takes the medicines in order to kill herself and the patient fails, would the physician’s intentions have been met? If he answers no, then he intended her death. His analysis assumes a more fully fleshed-out metaphysics of causation than Quill and Brody can conceive.

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35. This point is one made by Franklin G. Miller and Robert D. Truog for other purposes. See their “Re-thinking the Ethics of Vital Organ Donation,” Hastings Center Report 38(6):38 – 46 (2008). 36. See Robert D. Truog, “Is It Time to Abandon Brain Death?” Hastings Center Report 27(1):29 – 37 (1997). See also Miller and Truog, “Rethinking the Ethics”; Robert D. Truog and Franklin G. Miller, “The Dead Donor Rule and Organ Transplantation,” New England Journal of Medicine 359(7):674– 675 (2008); and Franklin G. Miller, Robert D. Truog, and Dan W. Brock, “The Dead Donor Rule: Can It Withstand Critical Scrutiny?” Journal of Medicine and Philosophy 35(3):299 – 312 (2010). 37. Parts of this section have been published in substantially different form. See Jeffrey P. Bishop, “Framing Euthanasia,” Journal of Medical Ethics 32:225 – 228 (2006). 38. Franklin G. Miller, Howard Brody, and Timothy E. Quill, “Can Physician-Assisted Suicide Be Regulated Effectively?” Journal of Law, Medicine, and Ethics 24(3):225 – 232 (1996). 39. See, for example, Ore. Rev. Stat. §§ 127.800 – 897 (2009). This law proceduralizes physician-assisted suicide. It allows physicians, after following its procedures, to prescribe medication cocktails that the patient takes on her own. It does not allow physicians to administer the medications by giving them intravenously, or what Quill calls Voluntary Active Euthanasia. 40. Quill, Lo, and Brock, “Palliative Options,” 2100. 41. Ibid. 42. Ibid. 43. Ibid. 44. Ibid. See especially Albert di Ianni, “The Direct/Indirect Distinction in Morals,” in Moral Norms and Catholic Tradition: Readings in Moral Theology, vol. 1, ed. Charles E. Curran and Richard A. McCormick (New York: Paulist Press, 1979), 215– 243. 45. Quill, Lo, and Brock, “Palliative Options,” 2100. 46. Ibid. See also Miller, Brody, and Quill, “Can Physician-Assisted Suicide Be Regulated”; and Timothy E. Quill, Lee B. Coombs, and S. Nunn, for the University of Pennsylvania Center for Bioethics Assisted Suicide Consensus Panel, “Palliative Treatments of Last Resort: Choosing the Least Harmful Alternative,” Annals of Internal Medicine 132(6):488 – 493 (2000). 47. Miller, Brody, and Quill, “Can Physician-Assisted Suicide Be Regulated.” 48. Martha Minow, “Which Question? Which Lie? Reflections on the Physician-Assisted Suicide Cases,” Supreme Court Review 1997, ed. Dennis J. Hutchinson, David A. Strauss, and Geoffrey R. Stone (Chicago: University of Chicago Press, 1998), 1– 30. 49. U.S. Constitution, amend. 14, sec. 1.

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50. Washington v. Glucksberg (1997); Vacco v. Quill (1997). 51. Miller, Brody, and Quill, “Can Physician-Assisted Suicide Be Regulated.” 52. Robert Burt, Death Is That Man Taking Names: Intersections of American Medicine, Law, and Culture (Berkeley: University of California Press, 2002). 53. Dame Janet Smith, The Shipman Inquiry: Report 1, Section 10.14, July 2002. http://news.bbc.co.uk/1/shared/bsp/hi/pdfs/27_01_05_shipman_ firstreport.pdf (accessed January 23, 2009). 54. See Ore. Rev. Stat. § 127.885 s. 4.01.1. 55. See Ore. Rev. Stat. § 127.810 s. 2.02. 56. See Ore. Rev. Stat. § 127.815 s. 3.01. 57. Minow, “Which Question?” 22. 58. Ibid., 22 – 23.

Chapter 5. Commissioning Death 1. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Defining Death: Medical, Legal, and Ethical Issues in the Determination of Death (Washington, DC: U.S. Government Printing Office, 1981). 2. Some states had already enacted statutory laws similar to the Uniform Determination of Death Act, and some states effectively did the same through common law judgments in cases brought before state judiciaries. 3. President’s Commission, Defining Death, 56. 4. See chapter 3 above; see also Zussman, Intensive Care. 5. Julius Korein, “The Problem of Brain Death,” Annals of the New York Academy of Sciences 315:19 – 38 (1978), 26. See James L. Bernat, Charles M. Culver, and Bernard Gert, “On the Definition and Criterion of Death,” Annals of Internal Medicine 94(3):389– 94 (1981). See also James L. Bernat, Charles M. Culver, and Bernard Gert, “Defining Death in Theory and Practice,” Hastings Center Report 12(1):5 – 9 (1982); James L. Bernat, “How Much of the Brain Must Die in Brain Death?” Journal of Clinical Ethics 3(1):21– 26 (1992); James L. Bernat, “A Defense of the Whole-Brain Concept of Death,” Hastings Center Report 28(2):14 – 23 (1998); and James L. Bernat, “The Biophilosophical Basis of Whole-Brain Death,” Social Philosophy & Policy 19:324 – 342 (2002). 6. David Lamb offers a more philosophically robust version than Korein. See his Death, Brain Death, and Ethics (London: Croom Helm, 1985). 7. P. Mollaret and M. Goulon, “Le coma dépassé,” Revue neurologique (Paris) 101:3 –15 (1959).

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8. Ad Hoc Committee of the Harvard Medical School, “A Definition of Irreversible Coma: Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death,” JAMA 205(6):85 – 88 (1968). 9. See, for example, W. H. Jalland, “Cerebral Abscess Secondary to Ear Disease; Trephining; Death,” Lancet 139:527 (1892). See also W. MacEwen, Symptoms of Abscess of Brain: Pyogenic Infective Diseases of the Brain and Spinal Cord (Glasgow: J Maclehose & Sons, 1893); V. Horsley, “On the Mode of Death in Cerebral Compression and Its Prevention,” Quarterly Medical Journal 2:306– 309 (1894); D. Duckworth, “Some Cases of Cerebral Disease in Which the Function of Respiration Entirely Ceases for Some Hours before That of the Circulation,” Edinburgh Medical Journal 3:145 –152 (1898); and H. Cushing, “Some Experimental and Clinical Observations Concerning States of Increased Intracranial Tension,” American Journal of Medical Science 124:375 – 400 (1902). 10. See Mita Giacomini, “A Change of Heart and a Change of Mind? Technology and the Redefinition of Death in 1968,” Social Science & Medicine 44(10):1465 –1482 (1997); and Lock, Twice Dead. 11. See Martin Pernick, “Back from the Grave: Recurring Controversies over Defining and Diagnosing Death in History,” in Death: Beyond WholeBrain Criteria, ed. Richard M. Zaner (Boston: Kluwer Academic Publishers, 1988), 17– 74. 12. See Martin Pernick, “Brain Death in Cultural Context: The Reconstruction of Death, 1967–1981,” in The Definition of Death: Contemporary Controversies, ed. Stuart J. Youngner, Robert M. Arnold, and Renie Schapiro (Baltimore: Johns Hopkins University Press, 1999), 3 – 33. 13. Ibid., 3. 14. Ibid., 5. See especially Robert J. White, Maurice Albin, and M. S. Locke, “Brain Transplantation: Prolonged Survival of Brain after CarotidJugular Interposition,” Science 5:779 – 781 (1965). 15. Pernick, “Brain Death in Cultural Context,” 6. 16. See especially J. E. Murray, “Organ Transplantation: The Practical Possibilities,” in Law and Ethics of Transplantation: A CIBA Foundation Blueprint, ed. Gordon Wolstenholme and Maeve O’Connor (London: J&A Churchill, 1966), 54 – 77. (This book was first published under the title Ethics in Medical Progress: With Special Reference to Transplantation.) 17. Agamben, Homo Sacer, 160 –165. 18. See Calixto Machado, Julius Kerein, Yazmina Ferrer, Liana Portela, Maria de la C. Garcia, and Jose M. Manero, “The Concept of Brain Death Did Not Evolve to Benefit Organ Transplants,” Journal of Medical Ethics 33(4):197– 200 (2007). These authors do not deal with the differing claims of Giacomini and Lock.

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19. Machado et al., “Concept of Brain Death,” 198. Of course, the Harvard committee’s criteria would emerge five years later. 20. J. P. Merrill, J. E. Murray, F. J. Takacs, E. B. Harger, R. E. Wilson, and G. J. Dammin, “Successful Transplantation of Kidney from a Human Cadaver,” JAMA 185:347– 353 (1963). 21. Alexandre’s comments are presented as part of a discussion of a paper delivered after Joseph Murray’s presentation; see Murray, “Organ Transplantation,” 68 – 69. In my investigation, I found no evidence that the data presented by Alexandre were ever published. See Joseph Murray, “Organ Transplantation: The Practical Possibilities,” in Law and Ethics of Transplantation, ed. Wolstenholme and O’Connor, 68 – 69. 22. Giacomini, “Change of Heart.” 23. Ibid. 24. See Law and Ethics of Transplantation, ed. Wolstenholme and O’Connor. 25. See Alexandre’s comments, Murray, “Organ Transplantation,” 69. 26. Ibid. 27. Ibid., 70. 28. See Alexandre’s comments after Sir Robert Platt’s presentation, in Robert Platt, “Ethical Problems in Medical Procedures,” in Law and Ethics of Transplantation, ed. Wolstenholme and O’Connor, 156. 29. See Alexandre’s comments, Murray, “Organ Transplantation,” 68. 30. See, for example, Starzl’s comments, Platt, “Ethical Problems,” 155. 31. See Alexandre’s comments, Platt, “Ethical Problems,” 156. See also R. S. Schwab, F. Potts, and A. Bonazzi, “EEG as an Aid in Determining Death in the Presence of Cardiac Activity (Ethical, Legal and Medical Aspects),” Electroencephalography and Clinical Neurophysiology 15:147–148 (1963); Revillard’s comment, Murray, “Organ Transplantation,” 70; and Hannibal Hamlin, “Life or Death by EEG,” JAMA 190(2):113 (1964). 32. Many of the speakers at the Ciba Foundation conference discussed the ways in which doctors could get around laws created to protect cadavers, indicating the strength of the belief that these patients were not alive. 33. See, for example, R. Minelli and L. Martinazzi Angiolini, “Myo cardial Glycogen in the Heart-Lung Preparation (Rat) During Severe Haemodynamic Work,” Pflügers Archive European Journal of Physiology 289(3):168 –173 (1966). 34. Murray, “Organ Transplantation,” 65. 35. Ibid., 55. 36. Schwab, Potts, and Bonazzi, “EEG.” 37. See Alexandre’s comments, Murray, “Organ Transplantation,” 69. 38. Ibid. See also F. D. Moore, Give and Take: The Development of Tissue Transplantation (Philadelphia: W. B. Saunders, 1964).

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39. S. D. Rosoff and R. S. Schwab, “The EEG in Establishing Brain Death: A 10-Year Report with Criteria and Legal Safeguards in the 50 States,” Electroenchephalography and Clinical Neurophysiology 24(3):284 (1968). 40. Schwab, Potts, and Bonazzi, “EEG,” 147. 41. See Roger Platt’s comments in “General Discussion,” in Law and Ethics of Transplantation, ed. Wolstenholme and O’Connor, 155; and David Daube, “Transplantation: Acceptability of Procedures and the Required Legal Sanctions,” in Law and Ethics of Transplantation, ed. Wolstenholme and O’Connor, 190. 42. Platt, in “General Discussion,” 155. 43. Daube, “Transplantation,” 190. 44. See discussion, Murray, “Organ Transplantation.” 45. Lock, Twice Dead, 86 – 88, 130 –135. 46. See “Surgery: The Ultimate Operation,” Time Magazine, December 15, 1967. http://www.time.com/time/magazine/article/0,9171,8376061,00.html (accessed January 30, 2009). 47. Giacomini, “Change of Heart”; see also Lock, Twice Dead. 48. See “Surgery: The Ultimate Operation.” 49. See Jay Katz’s transcription of Philip Blaiberg’s Looking at My Heart (New York: Stein and Day, 1968), in The Silent World of Doctor and Patient (New York: Free Press, 1984), 131–139. 50. Lock, Twice Dead, 85. 51. Pernick, “Brain Death in Cultural Context,” 3 – 33. 52. See Hillel A. Shapiro, ed., Experience with Human Heart Transplantation: Proceedings of the Cape Town Symposium, 13–16 July 1968 (Durban: Butterworths, 1969). Hereafter referred to as Shapiro, Experience. 53. The only participants in Barnard’s conference who were identified in any detail were the transplant surgeons. Two, de Villiers and Rose-Innes, were presented as either neurologists or neurosurgeons. 54. See Lillehei’s comments in Shapiro, Experience, 46. I have been unable to locate either a transcription of the study cited by Lillehei or an article where the data were published. 55. It is assumed that Zerbini means brain stem reflexes. 56. See Zerbini’s comments in Shapiro, Experience, 50. 57. See Barnard’s comments in Shapiro, Experience, 46. 58. See Cooley’s comments in Shapiro, Experience, 41. 59. Ibid. 60. See, for example, Dr. Mowbray’s comments in Shapiro, Experience, 49, where the language of patient and donor becomes confused. See also Ross’s comments about a patient kept alive with cardiac resuscitation, where the patient is thought of as donor, 61; and Kantrowitz’s statement, 62, referring to a “recipient” who had died prior to receiving a heart transplant.

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61. See Rose-Innes’s comment in Shapiro, Experience, 40. Lock mistakenly attributes this quote to de Villiers; see Lock, Twice Dead, 87. 62. See Kantrowitz’s comment in Shapiro, Experience, 49 – 50. 63. See Kantrowitz’s comment in Shapiro, Experience, 49. 64. Giacomini, “Change of Heart,” 1472. 65. Ibid. 66. Quoted in ibid., 1474. 67. Ad Hoc Committee, “Definition of Irreversible Coma.” 68. Giacomini, “Change of Heart,” 1475, quoting from a manuscript titled “Definition of Irreversible Coma” (including draft criteria, committee discussion, and related material) and dated April 11, 1968, in the Beecher manuscripts. 69. Ibid., 1475 – 1476, quoting from document dated April 11, 1968, Beecher manuscripts. 70. Ibid., 1475, quoting from document dated April 11, 1968, Beecher manuscripts. 71. Ibid., 1474, quoting from document dated April 11, 1968, Beecher manuscripts. 72. Pius XII, “Prolongation of Life,” 281– 287. 73. See Kantrowitz’s comment in Shapiro, Experience, 48. 74. President’s Commission, Defining Death, 46. Italics are in the original. 75. Ibid., 6. 76. Ibid., 46. 77. Alexander Morgan Capron and Leon R. Kass, “A Statutory Definition of the Standards for Determining Human Death: An Appraisal and a Proposal,” University of Pennsylvania Law Review 121(1):87– 118 (1972). See President’s Commission, Defining Death, 55 – 56, quoting Capron and Kass, “Statutory Definition,” 101–102. 78. Capron and Kass, “Statutory Definition,” 102. 79. President’s Commission, Defining Death, 56. 80. Ibid. 81. Ibid., 46. 82. Ibid., 6. 83. Ibid., 18. Oddly enough, Pernick claims that in the nineteenth century the public was fearful of being buried alive, but the commission tells us that the public trusted in the scientific development of medicine and its ability to diagnose death. 84. See Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 4th ed. (New York: Oxford University Press, 1994). 85. See H. Tristram Engelhardt, The Foundations of Bioethics, 2nd ed. (New York: Oxford University Press, 1996); and H. Tristram Engelhardt, Foundations of Christian Bioethics (Amsterdam: Swets and Zeitlinger, 2000).

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86. See John H. Evans, Playing God? Human Genetic Engineering and the Rationalization of Public Bioethical Debate (Chicago: University of Chicago Press, 2002). 87. President’s Commission, Defining Death, 38. 88. Ibid., 5 – 6. 89. See Guyton and Hall, Textbook of Medical Physiology, 11th ed. 90. President’s Commission, Defining Death, 32. 91. Ibid. 92. H. Tristram Engelhardt, “Reexamining the Definition of Death,” in Death: Beyond Whole-Brain Criteria, ed. Zaner, 93 – 94. Engelhardt calls the notion of integration, which I have called “holism,” the vitalist position, and calls the personhood position the personalist position. 93. President’s Commission, Defining Death, 6. 94. Ibid. 95. Ibid., 3. 96. Ibid., 6. 97. Ibid., 33. 98. Ibid. 99. Ibid., 55; see also Capron and Kass, “Statutory Definition,” 101. 100. Guyton and Hall, Textbook of Medical Physiology, 3. 101. Agamben, Homo Sacer, 11. Chapter 6. The Exact Location of Death 1. President’s Commission, Defining Death, 73. 2. See Bernat, Culver, and Gert, “On the Definition and Criterion of Death.” See also Bernat, Culver, and Gert, “Defining Death in Theory and Practice”; Bernat, “How Much of the Brain Must Die in Brain Death?”; Bernat, “A Defense of the Whole-Brain Concept of Death”; Bernat, “The Biophilosophical Basis of Whole-Brain Death”; and Korein, “The Problem of Brain Death.” 3. See Hans Jonas, “Against the Stream,” in Philosophical Essays: From Ancient Creed to Technological Man (Englewood Cliffs, NJ: PrenticeHall, 1974), 132 –140. See also Paul A. Byre, S. O’Reilly, and P. Quay, “Brain Death: An Opposing Viewpoint,” JAMA 242:1985 –1990 (1979). For a view arguing for neocortical function as the condition for death, see Joseph Fletcher, “Indicators of Humanhood: A Tentative Profile of Man,” Hastings Center Report 2(5):1– 4 (1972). See also his further development of his notion of humanhood, “Four Indicators of Humanhood — the Enquiry Matures,” Hastings Center Report 4(6):4 – 7 (1974). 4. See Robert M. Veatch, “The Impending Collapse of the WholeBrain Definition of Death,” Hastings Center Report 23(4):18 – 24 (1993). See also Truog, “Is It Time to Abandon Brain Death?”; D. Alan Shewmon,

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“Recovery from ‘Brain Death’: A Neurologist’s Apologia,” Linacre Quarterly 64(1):30 – 96 (1997); Shewmon, “ ‘Brain Stem Death,’ ‘Brain Death,’ and Death: A Critical Re-Evaluation of the Purported Evidence,” Issues in Law and Medicine 14(2):125 – 145 (1998); Shewmon, “Chronic ‘Brain Death’: Meta-Analysis and Conceptual Consequences,” Neurology 51(6):1538 –1545 (1998); and Shewmon, “The Brain and Somatic Integration: Insights into the Standard Biological Rationale for Equating ‘Brain Death’ with Death,” Journal of Medicine and Philosophy 26(5):457– 478 (2001). 5. President’s Council on Bioethics, Controversies in the Determination of Death: A White Paper by the President’s Council on Bioethics (Washington, DC: U.S. Government Printing Office, 2008). 6. Ibid., ix. 7. D. Alan Shewmon, “Brain Death: Can It Be Resuscitated?” Hastings Center Report 39(2):18 – 24 (2009). 8. Gary Kalcut and Nancy Neveloff Dubler, “The Line between Life and Death,” New York Times, May 10, 2005. http://www.nytimes.com/2005/ 05/10/opinion/10kalkut.html?ex=1152244800&en=04acc9a757e88c16&ei= 5070 (accessed July 5, 2006). 9. Marc Cooper, “Anti-Obama Taxpayer Tea Parties Steeped in Insanity,” Los Angeles Times, April 15, 2009. http://www.latimes.com/news/ opinion/commentary/la-oe-cooper15-2009apr15,0,3158535.story (accessed April 21, 2009). I shall return in chapter 7 to Persistent (or Permanent) Vegetive State, from which Terri Schiavo and Eluana Englaro suffered. 10. President’s Council, Controversies in the Determination of Death, 12, 19. See also Shewmon, “Brain Death,” 19. 11. For example, see Engelhardt, “Reexamining the Definition of Death.” See also George Khushf, “A Matter of Respect: A Defense of the Dead Donor Rule and of a ‘Whole-Brain’ Criterion for Determination of Death,” Journal of Medicine and Philosophy 35(3):330– 364 (2010). Khushf argues very compellingly that there are other reasons for robust definitions, that these earlier motivations for whole-brain death were motivated out of a sense of respect, and that this sense of respect requires whole-brain death or total brain failure. 12. President’s Council, Controversies in the Determination of Death, 11. 13. Ibid., 17. 14. See Miller and Truog, “Re-thinking the Ethics”; Truog and Miller, “Dead Donor Rule and Organ Transplantation”; and Miller, Truog, and Brock, “Dead Donor Rule: Scrutiny?” 15. See Miller and Truog, “Re-thinking the Ethics,” 39; Miller and Truog cite an article by Gary Greenberg, “As Good as Dead,” New Yorker, August 13, 2001, 36. 16. See Association of Organ Procurement Organizations, on accredited OPOs. http://www.aopo.org/click-state-find-opo-a6 (accessed January 29, 2011).

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17. Organ Procurement Organizations are independent companies that contract with various hospitals for the purposes of procuring organs. The OPO for most hospitals in Nashville, Tennessee, for example, is called Tennessee Donor Services; other procurement organizations have names such as LifeGift, LifeLink, LifeNet, LifePoint, Lifebank, and LifeShare. Each OPO contracts with hospitals in its geographic area but may cover noncontiguous areas. For instance, Tennessee Donor Services serves middle and east Tennessee but not west Tennessee, and also covers parts of Kentucky. 18. CMS decides what is paid by Medicare and Medicaid for various services, and every hospital in the country is accredited according to the guidelines articulated by JCAHO. 19. See U.S. Department of Health and Human Services, “Advisory Committee on Organ Transplantation Recommendations 29 – 35.” http:// www.organdonor.gov/acotRecs29-35.asp (accessed February 15, 2011). 20. Very little published information is available on these practices. The Institute of Medicine surveyed practices of OPOs in 1997. See Institute of Medicine, John T. Potts, and Roger Herdman, Non-Heart-Beating Organ Transplantation: Medical and Ethics Issues in Procurement (Washington, DC: National Academic Press, 1997). 21. I explore this claim in more detail below. See U.S. Department of Health and Human Services, “Transplant Growth and Management Collaborative Overview,” http://www.healthcarecommunities.org /SearchResult .aspx?searchtext=ODTB C%20change%20package (accessed February 3, 2011). These documents demonstrate the initiative to increase donation. 22. For an article on strategies to increase success in requesting organ donation, see L. A. Siminoff, H. M. Marshall, L. Dumenci, G. Bowen, A. Swaminathan, and N. Gordon, “Communicating Effectively about Donation: An Educational Intervention to Increase Consent to Donation,” Progress in Transplantation 19(1):35 – 43 (2009). 23. See Ana S. Iltis, Michael A. Rie, and Anji Wall, “Organ Donation, Patient’s Rights, and Medical Responsibilities at the End of Life,” Critical Care Medicine 37(1):310 – 315 (2009). 24. See U.S. Department of Health and Human Services, “Transplant Growth and Management Collaborative Overview.” 25. Ibid. 26. Ibid. 27. See Joint Commission on Accreditation of Healthcare Organization, “Clarification: Notification to Organ Procurement Organizations,” Joint Commission Perspectives 29(3):5 (2009). 28. See U.S. Department of Health and Human Services, “Organ Donation and Transplantation Breakthrough Collaborative Core” (ODTB C). http://www.healthcarecommunities.org /SearchResult.aspx?searchtext= ODTB C%20change%20package (accessed February 3, 2011). Follow links

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to ODTB C Change Package. See also Organ Transplantation Breakthrough Collaborative Best Practices Evaluation (Washington, DC: Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, 2005). 29. Ibid. 30. Ibid. 31. Lock, Twice Dead, 18. 32. Ibid., 19. 33. Ibid., 21. In this instance, the donor’s liver was to be transplanted into a patient at the same hospital. This is not always the case. Organs are often transferred between hospitals for use in other patients. 34. See “University of Pittsburgh Medical Center Policy and Procedure Manual: Management of Terminally Ill Patients Who May Become Organ Donors after Death,” Kennedy Institute of Ethics Journal 3(2):A1– A15 (1993). 35. Ibid., A1– A2. 36. Ibid., A2 – A3. 37. See Iltis, Rie, and Wall, “Organ Donation.” 38. Mark M. Boucek, Christine Mashburn, Susan M. Dunn, Rebecca Frizell, Leah Edwards, Biagio Pietra, and David Campbell, “Pediatric Heart Transplantation after Declaration of Cardiocirculatory Death,” New England Journal of Medicine 359(7):709 – 714 (2008). A clinical trial is essentially an experiment meant to answer the question of which of two or more interventions are more effective forms of treatment. 39. Ibid., 711, 713. 40. Robert M. Veatch, “Donating Hearts after Cardiac Death — Reversing the Irreversible,” New England Journal of Medicine 359(7):672 – 673 (2008). 41. Boucek et al., “Pediatric Heart Transplantation,” 713. 42. See chapter 2 above. 43. Indeed, this is a point that many doctors and philosophers have made. 44. See Cooley’s comments in Shapiro, ed., Experience with Human Heart Transplantation, 41. 45. See Truog and Miller, “Dead Donor Rule and Organ Transplantation,” 675. See also U.S. Department of Health and Human Services, “Transplant Growth and Management Collaborative Overview.” 46. President’s Council, Controversies in the Determination of Death, 11. 47. Ibid., 17. 48. Ibid., 17–18. 49. Bernat, “How Much of the Brain Must Die?”; see also Bernat, “Defense of the Whole-Brain Concept” and “Biophilosophical Basis.” 50. President’s Council, Controversies in the Determination of Death, 19.

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51. Ibid. 52. Ibid., 21– 47. 53. Ibid., 49. 54. Ibid. 55. Ibid., 52 – 58. 56. Ibid.; see especially Shewmon, “Chronic ‘Brain Death,’ ” “Recovery from ‘Brain Death,’ ” and “Brain and Somatic Integration.” 57. President’s Council, Controversies in the Determination of Death, 49. 58. Ibid. 59. Ibid., 59. 60. Ibid., 60. 61. Ibid., 61. 62. Ibid., 60 – 61. 63. Ibid., 61. 64. Ibid. 65. Ibid., 62 – 64. 66. Shewmon, “Brain Death,” 20. 67. Ibid. Emphases and parentheticals in original. 68. Ibid., 21. 69. Ibid. Here A is equivalent to awareness, and B is equivalent to breathing. The absence of these two suggests that both the neocortex and the brainstem are dead. 70. Ibid. 71. Engelhardt, “Reexamining the Definition of Death.” 72. Bichat, Physiological Researches, 9 –10. 73. Bernard, Introduction, 67. 74. See Cooley’s comments in Shapiro, ed., Experience with Human Heart Transplantation, 41. 75. Guyton and Hall, Textbook of Medical Physiology, 11th ed., 3. 76. Shewmon, “Brain and Somatic Integration,” 472. 77. Ibid., 472 – 473. 78. Bernat, “How Much of the Brain Must Die?”; see also Bernat, “Defense of the Whole-Brain Concept” and “Biophilosophical Basis.” 79. Bernat, Culver, and Gert, “On the Definition and Criterion of Death,” 389. 80. Bernat, “Biophilosophical Basis.” This is Bernat’s most philosophically robust attempt to ground his position of over thirty years. 81. Stephen Napier, “Brain Death: A Morally Legitimate Criteria for Determining Death?” Linacre Quarterly 76(1):68 – 81 (2009). 82. Robert M. Veatch, “Whole-Brain, Neocortical, and Higher Brain Related Concepts,” in Death: Beyond Whole-Brain Criteria, ed. Richard M. Zaner (Boston: Kluwer Academic Publishers, 1988), 182. Veatch’s essay predates Shewmon’s articulation of his position. However, it is clear that Veatch

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is thinking of a holism like Bernat’s, as well as one like Shewmon’s, when he uses the phrase “strange animalist view.” 83. This presumes there is a tradition called the Judeo-Christian tradition. Alasdair MacIntyre calls the Judeo-Christian tradition an “unfortunate fiction.” See Whose Justice? Which Rationality? (Notre Dame, IN: University of Notre Dame Press, 1988), 11. 84. Veatch, “Whole-Brain, Neocortical, and Higher Brain Related Concepts,” 183. See also Richard M. Zaner, “Brains and Persons: A Critique of Veatch’s View,” in Death: Beyond Whole-Brain Criteria, ed. Zaner, 188 –189. Here Zaner provides a thorough analysis of Veatch’s problematic conclusions. 85. Veatch, “Whole-Brain, Neocortical, and Higher Brain Related Concepts,” 183. 86. Veatch, “Impending Collapse,” 22. 87. Michael B. Green and Daniel Wikler, “Brain Death and Personal Identity,” Philosophy and Public Affairs 9(2):105 –133 (1980). 88. Ibid., 132. 89. Veatch takes mind-body unity to mean the Judeo-Christian understanding of human being. 90. Green and Wikler, “Brain Death and Personal Identity,” 132. 91. Ibid. 92. Ibid. 93. Emanuel, “Reexamining Death.” 94. Ibid., 27. 95. See especially Miller and Truog, “Re-thinking the Ethics”; see also Truog and Miller, “Dead Donor Rule and Organ Transplantation,” and Miller, Truog, and Brock, “Dead Donor Rule: Scrutiny?” 96. Truog and Miller, “Dead Donor Rule and Organ Transplantation,” 675. Chapter 7. The Sovereign Subject and Death 1. See Emanuel, “Reexamining Death.” 2. Miller, Truog, and Brock, “Dead Donor Rule: Scrutiny?”; Truog, “Is It Time to Abandon Brain Death?” 3. Miller and Truog, “Re-thinking the Ethics”; Truog and Miller, “Dead Donor Rule and Organ Transplantation.” 4. Callahan, Troubled Dream, 37. 5. Miller and Truog, “Re-thinking the Ethics.” 6. See chapter 4 above; Callahan, Troubled Dream, 17. 7. Ad Hoc Committee of the Harvard Medical School, “Definition of Irreversible Coma.” 8. Truog, “Is It Time to Abandon Brain Death?” 33. 9. Callahan, Troubled Dream, 37.

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10. See Foucault, History of Sexuality, 1:135. 11. Ibid., 1:136. 12. This summary is a compilation of several news wire accounts including the following: “Italy Man Wins Life Support Plea,” BB C News, November 13, 2008; “Vatican Cardinal Pleads for Life of Italian ‘Terri Schiavo,’ ” Catholic News Agency, November 11, 2008; Rachel Donadio, “Death Ends Coma Case That Set Off Furor in Italy,” New York Times, February 9, 2009; Michael Day, “Italy Faces Constitutional Crisis over Coma Woman,” Guardian, February 8, 2009; Richard Owen, “Top Italian Court Clears Way for Death of Eluana Englaro,” Times Online, November 13, 2008. 13. See Joshua E. Perry, Larry R. Churchill, and Howard Kirshner, “The Terry Schiavo Case: Legal, Ethical, and Medical Perspectives,” Annals of Internal Medicine 143:744 (2005); see also George J. Annas, “ ‘Culture of Life’ Politics at the Bedside: The Case of Terri Schiavo,” New England Journal of Medicine 352(6):1710 (2005). 14. Multi-Society Task Force on PVS, “Medical Aspects of the Persistent Vegetative State (1),” New England Journal of Medicine 330:1499 –1508 (1994); Multi-Society Task Force on PVS, “Medical Aspects of the Persistent Vegetative State (2),” New England Journal of Medicine 330:1572 –1579 (1994). The Multi-Society Task Force was made up of members from the American Academy of Neurology, the Child Neurology Society, the American Neurological Association, the American Association of Neurological Surgeons, and the American Academy of Pediatrics. 15. Schindler v. Schiavo, 79 So 2d 551, 557 (Fla Dist Ct App 2001). 16. Schiavo, 90-2908GD-003 (Fla Cir Ct, Pinellas Co, February 11, 2000). 17. David Brooks, “Morality and Reality,” New York Times, March 26, 2005, A13. I use the terms “social conservative” and “social liberal” because these are the ones most often used to characterize the partisans; I am fully aware that they also caricature each side. 18. Carl Hulse and David D. Kirkpatrick, “Even Death Does Not Quiet Harsh Political Fight,” New York Times, April 1, 2005. http://www.nytimes .com/2005/04/01/politics/01pols.html?ex=1152244800&en=fdc7ed8e9ca8 54ac&ei=5070 (accessed July 5, 2006). 19 Ibid. 20. Perry, Churchill, and Kirschner, “Terri Schiavo Case,” 744. 21. Annas, “ ‘Culture of Life’ Politics,” 1710. 22. Multi-Society Task Force on PVS, “Medical Aspects (1),” and “Medical Aspects (2).” 23. Agamben, Homo Sacer, 187. 24. See Congregation for the Doctrine of the Faith, “Responses to Certain Questions of the United States Conference of Catholic Bishops Concerning Artificial Nutrition and Hydration.”

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25. Ibid. 26. John Paul II, “To the Participants in the International Congress on ‘Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas,’ ” March 20, 2004, para 4. http://www.vatican.va/holy_ father /john_paul_ii /speeches /2004/march /documents / hf_jp-ii_spe_ 20040320_congress-fiamc_en.html (accessed April 30, 2009). Emphasis in the original. 27. See Pius XII, “Prolongation of Life,” 284. 28. Ibid. 29. John Paul II, Evangelium Vitae, 4/no. 2. 30. Pius XII, “Prolongation of Life,” 284. 31. Kevin W. Wildes, “Ordinary and Extraordinary Means and the Quality of Life,” Theological Studies 57:500 – 512 (1996). 32. See Texas Bishops, “On Withdrawing Artificial Nutrition and Hydration,” Origins 20:53 – 55 (1990). See also Oregon and Washington Bishops, “Living and Dying Well,” Origins 21(22):345 – 352 (1991); Pennsylvania Bishops, “Nutrition and Hydration: Moral Considerations,” Origins 21(34):541– 553 (1992). 33. Wildes, “Ordinary and Extraordinary Means,” 500. 34. John Paul II, “To the Participants,” para. 4 – 5. 35. The Oregon Hemlock Society supported what would later become the Oregon Death with Dignity Act. The Oregon and Washington bishops’ conference produced their statement and explicitly linked it to the discussion of euthanasia; Oregon and Washington Bishops, “Living and Dying Well.” 36. Pennsylvania Bishops, “Nutrition and Hydration,” 549 – 550. 37. This phrase is the title of a book by Nicholas Rose; see his The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century (Princeton, NJ: Princeton University Press, 2007). 38. See H. Tristram Engelhardt, Jr., “Beyond the Best Interests of Children: Four Views of the Family and of Foundational Disagreements Regarding Pediatric Decision Making,” Journal of Medicine and Philosophy 35(5):499– 517 (2010). See also Stephen A. Erickson, “The Wrong of Rights: The Moral Authority of the Family,” Journal of Medicine and Philosophy 35(5):600 – 616 (2010). 39. See Milbank, Theology and Social Theory, 281– 282. 40. See Foucault, “La crisis de la medicina o la crisis de la antimedicina”; and The Birth of Biopolitics: Lectures at the Collège de France, 1978–1979, trans. Graham Burcell, ed. Michel Senellart (New York: Palgrave Macmillan, 2008). Originally published in 2004 as Naissance de la biopoilitique: Cours au collège de France (1978–1979), ed. F. Ewald, A. Fontana, and M. Senellart, by Seuil. 41. See Michel Foucault, “Two Lectures,” in Power/Knowledge: Selected Interviews & Other Writings, 1972 –1977, ed. C. Gordon (New York:

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Pantheon Books, 1980), 78 – 108; see also Michel Foucault, “The Political Technology of Individuals,” in Technologies of the Self, ed. L. H. Martin, H. Gutman, and P. H. Hutton (Amherst: University of Massachusetts Press, 1988), 145 –162. 42. Foucault, “Political Technology of Individuals.” 43. Foucault, “Political Technology of Individuals.” See also Han, Foucault’s Critical Project. 44. Foucault, “Political Technology of Individuals.” 45. See Han, Foucault’s Critical Project. Han claims that Foucault never escapes this predicament because he was a poor phenomenologist, a point I will discuss in my final chapter. 46. Agambem, Homo Sacer, 3. 47. Ibid. 48. Ibid., 1. 49. Giorgio Agamben, State of Exception, trans. Kevin Atell (Chicago: University of Chicago Press, 2005). Originally published in 2002 as Stato di eccezione by Bollati Boringhieri editore s.r.l., Turin. 50. Hobbes, Leviathan, 89. For a rendering of the ways in which Hobbes’ political nominalism can be understood as a form of Christian heresy, see Milbank, Theology and Social Theory, 9 – 47. 51. For Hobbes, the surrendering of life to the monarch is a philosophical surrender, not an actual historical event. 52. Agamben, Homo Sacer, 35. 53. See John Locke, Two Treatises of Government, ed. Peter Laslett (Cambridge: Cambridge University Press, 1988). Originally published in 1698. 54. See John Rawls, A Theory of Justice, rev. ed. (Cambridge, MA: Harvard University Press, 1999); Robert Nozick, Anarchy, State and Utopia (Oxford: Blackwell Publishers, 1974). 55. See Gerald P. McKenney, To Relieve the Human Condition: Bioethics, Technology, and the Body (Albany: State University of New York Press, 1997). 56. Foucault, “Two Lectures,” 98. 57. See Foucault, History of Madness and Birth of the Clinic. 58. Foucault, Birth of the Clinic, 34. 59. See Truog, “Is It Time to Abandon Brain Death?”; Truog and Miller, “Dead Donor Rule and Organ Transplantation”; Miller and Truog, “Rethinking the Ethics”; Emanuel, “Reexamining Death”; Veatch, Death, Dying; and Veatch, “Whole-Brain, Neocortical, and Higher Brain Related Concepts.” 60. Agamben, Homo Sacer, 148; italics and parenthetical statements in original. 61. Foucault, History of Sexuality, 1:143. 62. See Lock, Twice Dead; see also Bishop, Rosemann, and Schmidt, “Fides Ancilla Medicinae.”

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•    353

63. Lock, Twice Dead. 64. A. Ravelingien, F. Mortier, E. Mortier, I. Kerremans, and J. Braeckman, “Proceeding with Clinical Trials of Animal to Human Organ Transplantation: A Way Out of the Dilemma,” Journal of Medical Ethics 30:92– 98 (2004). 65. See R. Sparrow, “Right of the Living Dead? Consent to Experimental Surgery in the Event of Cortical Death,” Journal of Medical Ethics 32:601– 605 (2006); S. Curry, “Living Patients in a Permanent Vegetative State as Legitimate Research Subjects,” Journal of Medical Ethics 32:606 – 607 (2006); H. Draper, “Research and Patients in a Permanent Vegetative State,” Journal of Medical Ethics 32:607 (2006); J. Thompson, “Relatives of the Living Dead,” Journal of Medical Ethics 32:607– 608 (2006); N. Levy, “Respecting Rights . . . to Death,” Journal of Medical Ethics 32:608 – 609 (2006); and A. Ravelingien, F. Mortier, E. Mortier, I. Kerremans, and J. Braeckman, “Author’s Reply: A Body at Will,” Journal of Medical Ethics 32:609 – 611 (2006). 66. MacIntyre, After Virtue, 2nd ed., 224. Chapter 8. The Discursive Turn 1. See Jessica Mitford, The American Way of Death (New York: Simon and Schuster, 1963). 2. See Kübler-Ross, On Death and Dying. 3. Foucault makes a similar point about sex in History of Sexuality, 1:3 –13. 4. See Avery D. Weisman, On Dying and Denying: A Psychiatric Study of Terminality (New York: Behavioral Publications, 1972); Ernest Becker, The Denial of Death (New York: The Free Press, 1973); and Edwin S. Shneidman, ed., Death and the College Student (New York: Behavioral Publications, 1972). 5. Oddly enough, Weisman mentions Kübler-Ross only once in his On Dying and Denying (109), and Becker in Denial of Death does not mention her at all. Was she excluded from the polite company of good social scientists? 6. See Avery D. Weisman and Robert Kastenbaum, The Psychological Autopsy (New York: Behavioral Publications, 1968). 7. As I noted in chapter 1; see Foucault, The Order of Things, 365. 8. See Rose, The Politics of Life Itself. 9. George L. Engel, “The Need for a New Medical Model: A Challenge for Biomedicine,” Science 196(4286):129 –136 (1977). 10. Ibid., 129. 11. Ibid. 12. Ibid. Engel is here quoting from a Rockefeller Foundation seminar in 1976. 13. Ibid., 130.

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14. Ibid. 15. See Thomas S. Szasz, The Myth of Mental Illness: Foundations of a Theory of Personal Conduct (New York: Harper and Row, 1974). 16. See also Foucault’s discussion of organic versus functional disorders in Birth of the Clinic, 147. See especially chapter 10, “A Crisis in Fevers,” in which Foucault documents the history of differentiation of organic versus functional disorders. Despite the fact that the distinction is very old and questionable, a tradition in medicine continues to define certain disorders as organic, such as Inflammatory Bowel Disease, and certain disorders as functional, such as Irritable Bowel Syndrome. 17. Engel, “New Medical Model,” 131. 18. Ibid., 132. 19. Ibid. 20. Ibid. 21. Ibid., referring to an article published by J. Cassel, American Journal of Public Health 54:1482 (1964). 22. Ibid. 23. Ibid., 133. 24. Ibid., 132. 25. See Jeffrey P. Bishop, “Creating Narratives in the Clinical Encounter,” Medical Humanities Review 14(1):10 – 23 (2000). 26. Engel, “New Medical Model,” 130. 27. Ibid. 28. Ibid., 133. 29. See Weisman and Kastenbaum, Psychological Autopsy. See also C. K. Aldrich, “The Dying Patient’s Grief,” JAMA 184:324 – 331 (1963); J. Zinker and S. Fink, “The Possibility for Psychological Growth in a Dying Person,” American Journal of Psychiatry 181:1099–1102 (1962); M. A. Lieberman, “Observations on Death and Dying,” Gerontologist 6:70 – 72 (1966); I. E. Alexander and A. M. Adlerstein, “Studies in the Psychology of Death,” in Perspectives in Personality Research, ed. H. P. David and J. C. Brenglemann (New York: Springer, 1960), 65– 92; E. H. Ackerknecht, “Death and the History of Medicine,” Bulletin of the History of Medicine 42:19– 23 (1968); E. M. Pattison, “The Experience of Dying,” American Journal of Psychotherapy 21(1):106–115 (1965); and A. D. Weisman and T. P. Hackett, “Predilection to Death,” Psychosomatic Medicine 23:232– 255 (1961). 30. See George L. Engel, “Is Grief a Disease? A Challenge for Medical Research,” Psychosomatic Medicine 23:18 – 22 (1961). 31. See Ron Rosenbaum, “Dead Like Her: How Elisabeth Kübler-Ross Went around the Bend,” in Slate.com. September 23, 2004. http://www.slate .com/id/2107069/ (accessed June 22, 2008). 32. Kübler-Ross, On Death and Dying, 35. 33. See Kübler-Ross, ed., Death: The Final Stage of Growth.

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34. See Dylan Thomas, “Do not go gentle into that good night.” 35. Kübler-Ross uses the terms “manage” and “management” several times in On Death and Dying; “coping” is the preferred term in Death: The Final Stage of Growth. 36. See especially Raymond G. Carey, “Living until Death: A Program of Service and Research for the Terminally Ill,” in Death: The Final Stage of Growth, ed. Kübler-Ross, 75 – 86. 37. See Psychological Assessment Resources, Inc. http://www3.parinc .com/ (accessed June 22, 2008). 38. See the essays in Sidney Zisook, ed., Biopsychosocial Aspects of Bereavement (Washington, DC: American Psychiatric Press, 1987). 39. See especially Sidney Zisook, “Introduction,” in Biopsychosocial Aspects of Bereavement, ed. Zisook, xi – xii. 40. See Thomas Faschingbauer, Sidney Zisook, and Richard DeVaul, “The Texas Revised Inventory of Grief,” in Biopsychosocial Aspects of Bereavement, ed. Zisook, 123. 41. Ibid. 42. Ibid. 43. See Diagnostic and Statistical Manual of Mental Disorders, 4th ed., 684. 44. Faschingbauer, Zisook, and DeVaul, “Texas Revised Inventory,” 123; see also Engel, “New Medical Model,” 135. 45. See Peter C. Hill and Ralph W. Hood, Jr., eds., Measures of Religiosity (Birmingham, AL: Religious Education Press, 1999). 46. For a focus on attitudes toward religion, see L. J. Francis and M. T. Stubbs, “Measuring Attitudes towards Christianity: from Childhood to Adult,” Personality and Individual Differences 8:741– 743 (1987). For a focus on concepts of God, see P. Benson and B. Spilka, “God Image: A Function of Self-Esteem and Locus Control,” Journal for the Scientific Study of Religion 12:297– 310 (1973). For faith development, see James W. Fowler, Stages of Faith: The Psychology of Human Development (New York: Harper Collins, 1995); see also M. Barnes, D. Doyle, and B. Johnson, “The Formulation of a Fowler Scale: An Empirical Assessment among Catholics,” Review of Religious Research 30(4):412 – 420 (1989). For religious commitment, see W. C. Roof and R. P. Perkins, “On Conceptualizing Salience in Religious Commitment,” Journal of the Scientific Study of Religion 14:111–128 (1975). For religious coping, see Kenneth I. Pargament, The Psychology of Religion and Coping (New York: Guilford Press, 1997); see also Kenneth I. Pargament, Harold G. Koenig, and Lisa M. Perez, “The Many Methods of Religious Coping: Development and Initial Validation of the RCOPE,” Journal of Clinical Psychology 56(4):519– 543 (2000). 47. See R. F. Paloutzian and C.W. Ellison, “Loneliness, Spiritual WellBeing and Quality of Life,” in Loneliness: A Sourcebook of Current Theory,

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Research, and Therapy, ed. L. A. Peplau and D. Perman (New York: Wiley Interscience, 1982), 224 – 237. See also C.W. Ellison, “Spiritual Well-Being: Conceptualization and Measurement,” Journal of Psychology and Theology 11(4):330 – 340 (1983). 48. Fowler, Stages of Faith. 49. See Lawrence Kohlberg, The Philosophy of Moral Development: Moral Stages and the Idea of Justice (New York: Harper and Row, 1981); Jean Piaget, The Construction of Reality in the Child (New York: Basic Books, 1954). 50. See Elisabeth McSherry, “Modernization of the Clinical Science of Chaplaincy,” Care Giver 4(1):1–13 (1987). 51. See Fitchett, Spiritual Assessment in Pastoral Care, 16. 52. Pargament, Koenig, and Perez, “Many Methods of Religious Coping,” 520. 53. Ibid., 521. 54. For an excellent and thorough evaluation of the mediation between individuals and the universal, see Milbank, Theology and Social Theory. 55. Pargament, Koenig, and Perez, “Many Methods of Religious Coping,” 524. 56. Ibid. 57. George Fitchett, Assessing Spiritual Needs: A Guide for Caregivers (Minneapolis: Augsburg Fortress, 1993), 40. 58. Ibid., 42. 59. Ibid. 60. Ibid., 47– 48. 61. Ibid., 20. 62. Ibid., 132. 63. Fitchett, Spiritual Assessment in Pastoral Care, 16. 64. See MacIntyre, After Virtue, 2d ed., 23 – 35, 62 – 78. 65. See especially H. Tristram Engelhardt, “Generic Chaplaincy: Providing Spiritual Care in a Post-Christian Age,” Christian Bioethics 4:231– 238 (1998). 66. See Porter, Trust in Numbers. See also Porter, The Rise of Statistical Thinking, 1820 –1900, and Desrosières, Politics of Large Numbers. 67. See Nancy Cartwright, Nature’s Capacities and Their Measurement (New York: Oxford University Press, 1989). 68. Polkinghorne, Methodology for the Human Sciences, 3. 69. See Earl Babbie, The Practice of Social Research, 10th ed. (Belmont, CA: Wadsworth/Thomason, 2004), 119. 70. Ibid., 132. 71. Ibid., 131. See also the inset article by Patricia Fisher, “The Importance of Variable Names,” in Babbie, The Practice of Social Research, 130–131.

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Notes to Pages 253–259

•    357

Chapter 9. The Palliating Gaze 1. Shirley du Boulay, Cicely Saunders: The Founder of the Modern Hospice Movement (London: Hodder and Stoughton, 1984), 69. 2. Ibid., 54 – 59. 3. See David Clark, “Cradled to the Grave? Terminal Care in the United Kingdom, 1948 –1967,” Mortality 4(3):225 – 247 (1999). 4. Dame Cicely Saunders, “A Personal Therapeutic Journey,” British Medical Journal 313:1600 (1996). 5. See J. Andrew Billings, “What Is Palliative Care?” Journal of Palliative Medicine 1(1):73 – 81 (1998). 6. Ibid., 69. 7. See Bishop, Rosemann, and Schmidt, “Fides Ancilla Medicinae,” citing Kay Peter Jankrift, Krankheit und Heilkunde in Mittelalter (Darmstadt: Wissenschaftliche Buchgesellschaft, 2003), 21– 40. For further background, see Nancy C. Siraisi, Medieval and Early Renaissance Medicine: An Introduction to Knowledge and Practice (Chicago: University of Chicago Press, 1990). See also Constance E. Putnam, Hospice or Hemlock? Search for Heroic Compassion (Westport, CT: Praeger, 2002). 8. Bishop, Rosemann, and Schmidt, “Fides Ancilla Medicinae,” 23. 9. See Diego Gracia, “Palliative Care and the Historical Background,” in The Ethics of Palliative Care: European Perspectives, ed. Henk ten Have and David Clark (Buckingham, UK: Open University Press, 2002), 22. 10. Ibid., 30; see also Putnam, Hospice or Hemlock? 11. Gracia, “Palliative Care.” 12. A recent qualitative study of young doctors in their residency by Joshua Perry, Joseph Fanning, Jeffrey P. Bishop, and Larry Churchill found that the residents gave more compassionate care to those who are dying than to those patients on the curative track; however, once patients move to palliative care, marking a final recognition that cure was impossible, the residents believed that compassionate care is best delivered by palliative care. 13. See Gracia, “Palliative Care,” citing David Clark and Jane Seymour, Reflections on Palliative Care (Buckingham, UK: Open University Press, 1999), 22. 14. See Janice Hamilton, “Dr. Balfour Mount and the Cruel Irony of Our Care for the Dying,” Canadian Medical Association Journal 153(3):334– 336 (1995); see also Gracia, “Palliative Care,” 30. 15. See T. Pastrana, S. Junger, C. Ostgate, F. Elsner, and L. Radbruch, “A Matter of Definition — Key Elements Identified in a Discourse Analysis of Definitions of Palliative Care,” Palliative Medicine 22:222 – 232 (2008). 16. Gracia, “Palliative Care,” 30. 17. Ibid., 31.

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18. World Health Organization, Cancer Pain Relief and Palliative Care (Geneva: WHO, 1990), 11. 19. See Billings, “What Is Palliative Care?” 20. Ibid., 74. 21. Ibid. 22. Doyle, Hanks, and MacDonald, “Introduction,” 3. 23. Billings, “What Is Palliative Care?” 74. 24. Ibid., 80. 25. National Consensus Project for Quality Palliative Care, Clinical Practice Guidelines for Quality Palliative Care, 2nd ed. (Pittsburgh, PA: National Consensus Project for Quality Palliative Care, 2009), 2. 26. Ibid., 6, quoting from the original 2004 document produced by the group. 27. Ibid., 7– 8. 28. Doyle, Hanks, and MacDonald, “Introduction,” 2. Italics are in the original. 29. Ibid. Italics are in the original. 30. Ibid. 31. D. J. A. Janssen, M. A. Spruit, E. F. M. Wouters, and J. M. G. A. Schols, “Daily Symptom Burden in End-Stage Chronic Organ Failure: A Systematic Review,” Palliative Medicine 22:938 – 948 (2008). 32. Doyle, Hanks, MacDonald, “Introduction,” 3. 33. Ibid. 34. Irene J. Higginson and Julia M. Addington-Hall, “The Epidemiology of Death and Symptoms,” in Oxford Textbook of Palliative Medicine, ed. Doyle, Hanks, and MacDonald, 15. 35. Doyle, Hanks, and MacDonald, “Introduction,” 4. 36. Nathan I. Cherny, “The Problem of Suffering,” in Oxford Textbook of Palliative Medicine, ed. Doyle, Hanks, and MacDonald, 7. Here Cherny cites Cherny, N. Coyle, and Kathleen M. Foley, “Suffering in the Advanced Cancer Patient: A Definition and Taxonomy,” Journal of Palliative Care 10(2):57– 70 (1994). Eric Cassell holds that human suffering defies attempts at taxonomy; see his classic text, The Nature of Suffering and the Goals of Medicine (New York: Oxford University Press, 1991). 37. Cherny, “Problem of Suffering,” 7. 38. Ibid., 8. Existential distress seems to stand in for spiritual distress here. 39. Ibid., 8 – 9. 40. Ibid., 9 –10. 41. Ibid., 10. 42. NCP, Clinical Practice Guidelines, 4. 43. Ibid., 3. 44. Ibid.

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Notes to Pages 267–271

•    359

45. Ibid., 4. 46. Cherny, “Problem of Suffering,” 10. 47. Ruth D. Powazki and Declan Walsh, “Acute Care Palliative Medicine: Psychosocial Assessment of Patients and Primary Caregivers,” Palliative Medicine 13:373 (1999). In the following discussion, I picked this article by Powazki and Walsh to demonstrate that surveillance of team functioning is fairly routine. Their study, which looks at psychosocial aspects of acute palliative care patients and caregivers, reinforces the efficient functioning of the palliative care team. To my knowledge, there are no philosophical evaluations of assessments that seek to understand the role of assessing in any aspect of medicine. In other words, the assessment is so valuable as a tool to medicine that it is assumed by all to be standard in medicine, as reflected in this study. 48. MacIntyre, After Virtue, 2nd ed., 26 – 27. 49. Powazki and Walsh, “Acute Care,” 373. 50. International Working Group on Death, Dying, and Bereavement, “Assumptions and Principles of Spiritual Care,” Death Studies 14:75 – 81 (1990). 51. Christina M. Puchalski, Betty Ferrell, Rose Virani, Shirley OtisGreen, Pamela Baird, Janet Bull, Harvey Chochinov, George Handzo, Holly Nelson-Becker, Maryjo Prince-Paul, Karen Pugliese, and Daniel Sulmasy, “Improving the Quality of Spiritual Care as a Dimension of Palliative Care: Consensus Conference Recommendations,” Journal of Palliative Medicine 12(10): 885 – 904 (2009). 52. See Tony Walters, “The Ideology and Organization of Spiritual Care: Three Approaches,” Palliative Medicine 11(1):21– 30 (1997). 53. Ibid., 22 – 24. 54. Ibid., 24 – 25. 55. Ibid., 25 – 26. 56. Ibid., 26 – 30. 57. Allan Kellehear, “Spirituality and Palliative Care: A Model of Needs,” Palliative Medicine 14:154 (2000). 58. Ibid., 153. 59. Ibid. 60. See L. H. Heyse-Moore, “On Spiritual Pain in the Dying,” Mortality 1:297– 315 (1996). See also M.W. Hay, “Principles in Building Spiritual Assessment Tools,” American Journal of Hospice Care, September / October:25 – 31 (1989), and Balfour Mount, “Whole Person Care: Beyond Psychosocial and Physical Needs,” American Journal of Hospice and Palliative Care, January/February:28 – 37 (1993). For similar sentiments about the relationship of “negative” spiritual coping to medicine, see Pargament, Koenig, and Perez, “Many Methods of Religious Coping.” 61. Kellehear, “Spirituality and Palliative Care,” 154.

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62. Ibid. 63. Ibid. 64. Puchalski et al., “Improving the Quality of Spiritual Care.” 65. Ibid., 887. It is interesting that the word sacred, here used as a noun, is parallel to the adjective significant. 66. Ibid., 890. 67. Ibid., 891. 68. M. McCaffery and C. L. Pasero, “Pain Ratings: The Fifth Vital Sign,” American Journal of Nursing 97(2):15 –16 (1997). 69. Puchalski et al., “Improving the Quality of Spiritual Care,” 891. 70. Clinical Pastoral Education (CPE) is required for pastors who work in a hospital. Puchalski et al. are noting that a hospice chaplain must be trained in CPE and must be certified by a board of examiners for chaplains. 71. Puchalski et al., “Improving the Quality of Spiritual Care,” 891. 72. Ibid. 73. Ibid., 893. 74. Ibid. 75. Ibid. 76. Ibid., 893 – 895, 899 – 900. 77. Engelhardt, “Generic Chaplaincy,” and personal communication. Engelhardt describes the situation of an Orthodox Christian who was dying. The hospital chaplain did not call an Orthodox priest for the patient in need of Holy Communion at the time of his death, insisting that she could minister to the family’s needs. 78. Puchalski et al., “Improving the Quality of Spiritual Care,” 895. 79. Ibid., 894. 80. Ibid., 895 – 896. 81. Ibid., 897. 82. Ibid. 83. See Pastrana et al., “Matter of Definition.” 84. See P. Cacchione, “What’s Another Word for Euphemism?” American Journal of Hospice and Palliative Care 17:6 – 7 (2000). 85. Fiona Randall and R. S. Downie, The Philosophy of Palliative Care: Critique and Reconstruction (Oxford: Oxford University Press, 2006). 86. Ibid. For problems (1) – (3), see, respectively, 3 – 23, 25 – 51, and 53 – 74. 87. This criticism is the same as that articulated by Simon Woods, Death’s Dominion: Ethics at the End of Life (Maidenhead, UK: Open University Press, 2007). 88. Randall and Downie, Philosophy of Palliative Care, 201. 89. Ibid., 179. 90. Ibid., 201– 209. 91. Ibid., 201.

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92. Ibid., 202 – 203. Randall and Downie seem to be using “gaze” in a very different sense than Foucault’s, but they do not acknowledge the difference. 93. I am thankful to Trevor Bibler for pointing out that Randall and Downie do not appeal to any historical literature, primary or secondary, to make their case. Bibler’s research into Asclepian temple worship and healing practices, moreover, found no ancient reference to the use of the serpentine gaze. There are ancient references to snakes whose tongues lick the wounds of the supplicants and thereby heal patients; healing in the Asclepian temple was not merely spiritual healing — for instance, emotional acceptance and spiritual renewal, as Randall and Downie claim — but could also be an outright cure. 94. I note that Randall and Downie do not use the term “totalizing.” 95. See chapter 2 in this volume; see also Dale C. Smith, “Hippocratic Oath and Modern Medicine.” 96. See Putnam, Hospice or Hemlock? 111–112; see also Timothy Quill and Betty Rollin, “Dr. Kevorkian Runs Wild,” New York Times, August 29, 1996, A25. 97. Putnam, Hospice or Hemlock? 135. 98. See Quill, Lo, and Brock, “Palliative Options”; and Miller and Truog, “Re-thinking the Ethics,” 40 – 41. 99. See Jane Gross, “Quiet Doctor Finds a Mission in Assisted Suicide Court Case,” New York Times, January 2, 1997, B1, quoting Laurence Tribe.

Recapitulation 1. See Ladelle McWhorter, “Governmentality, Biopower, and the Debate over Genetic Enhancement,” Journal of Medicine and Philosophy 34(4):409 – 437 (2009). 2. See Peter J. Franks, Chris Salisbury, N. Bosanquet, E. K. Wilkinson, M. Lorentzon, S. Kite, A. Naysmith, and I. J. Higginson, “The Level of Need for Palliative Care: A Systematic Review of the Literature,” Palliative Medicine 14:94 (2000). 3. See, for example, P. J. Ryan, V. Howell, and E. J. Hardy, “Lung Cancer, Caring for the Caregivers: A Qualitative Study of Providing Pro-Active Social Support Targeted to the Carers of Patients with Lung Cancer,” Palliative Medicine 22(3):233 – 238 (2008). 4. See especially V. M. Wilkins, T. E. Quill, and D. A. King, “Assessing Families in Palliative Care: A Pilot Study of the Checklist of Family Relational Abilities,” Journal of Palliative Medicine 12(6):517– 519 (2009). See also L. Holst, M. Lundgren, L. Olsen, and T. Ishoy, “Dire Deadlines: Coping with Dysfunctional Family Dynamics in an End-of-Life Setting,” International Journal of Palliative Nursing 15(1):34 – 41 (2009).

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362 •    N o t e s   t o   P a g e s   2 8 4 – 2 8 8

5. C. Kennett and M. Payne, “Understanding Why Palliative Care Patients ‘Like Day Care’ and ‘Getting Out,’ ” Journal of Palliative Care 21(4):292 – 298 (2005). 6. See, for example, G. G. Ano and E. B. Vasconcelles, “Religious Coping and Psychological Adjustment to Stress: A Meta-analysis,” Journal of Clinical Psychology 61(4):461– 480 (2005). See also K. I. Pargament, H. G. Koenig, N. Tarakeshwar, and J. Hahn, “Religious Struggle as a Predictor of Mortality among Medically Ill Elderly Patients: A Two-Year Longitudinal Study,” Archives of Internal Medicine 161(15):1881–1885 (2001); and N. Tarakeshwar, L. C. Vanderwerker, E. Paulk, M. J. Pearce, S.V. Kasl, and H. G. Prigerson, “Religious Coping Is Associated with the Quality of Life of Patients with Advanced Cancer,” Journal of Palliative Medicine 9(3):646– 657 (2006).

Chapter 10. Anticipating Life 1. See Krakauer, “Prescriptions.” 2. See Engel, “Need for a New Medical Model”; Kübler-Ross, On Death and Dying. 3. Nuland, How We Die; Cassell, Nature of Suffering. For Rita Charon, see her “Narrative Medicine: Form, Function, and Ethics,” Annals of Internal Medicine; 134(1):83– 87 (2001), and “Narrative Medicine: A Model for Empathy, Reflection, Profession, and Trust,” JAMA 286(15):1897–1902 (2001). 4. See Dominique Janicaud, ed., Phenomenology and the “Theological Turn”: The French Debate (New York: Fordham University Press, 2001). 5. See the conclusion to Han, Foucault’s Critical Project. 6. Heidegger, Being and Time, 68 – 70. 7. Ibid., 56. For Heidegger, Da-sein, being there, is his term for human being. Of special interest here is Heidegger’s conclusion in a footnote that even in his rejection of the similarity (if not identity) between subject and Dasein, on the one hand, and object and world, on the other hand, he has already committed a fatal flaw. This is also the fatal flaw committed by medicine. 8. Ibid., 68 – 70. 9. S. Kay Toombs, The Meaning of Illness: A Phenomenological Account of the Different Perspectives of Physician and Patient (Dordrecht: Kluwer Academic Publishers, 1993). 10. Intention here should be taken to mean both the act of attending to things and the act of meaning to do something. 11. See also S. Kay Toombs, “Reflections on Bodily Change: The Lived Experience of Disability,” in Handbook of Phenomenology and Medicine, ed. S. Kay Toombs (Dordrecht: Kluwer Academic Publishers, 2001), 248. 12. Toombs, Meaning of Illness, 34, 51, 57; “Reflections on Bodily Change,” 248.

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13. Joel James Shuman, The Body of Compassion: Ethics, Medicine, and the Church (Boulder, CO: Westview Press, 1999), 1– 2. 14. Ibid., 1. 15. After all, the brain/body dualism is only the material progeny of the mind/body dualism. 16. Heidegger, Being and Time, 67– 71. 17. Toombs, Meaning of Illness, 15. 18. Ibid., 62 – 70. See also Toombs, “Reflections on Bodily Change,” 149. 19. The resurrection of the body is a central doctrine of ancient and contemporary orthodox Christian doctrine. 20. It is presumptuous of me to so slightly hint at the being-in-theworld of those that we, in medicine, have called disabled. As many scholars of disability have noted, medicine has always focused on function, which in many instances cannot be restored or (if a capacity has never been present) possessed. We, in medicine, have attempted to force these bodies into capacities that they do not or have never possessed, only to harm these bodies, well-intentioned although we are. 21. The purpose of Toombs’s book, Meaning of Illness, is to show the way in which the body is an object differently for those who experience illness, compared to the doctor’s way of objectifying it. 22. See Arthur W. Frank, At the Will of the Body: Reflections on Illness (Boston: Houghton Mifflin, 1991). 23. Ibid., 1– 7. 24. Cassell, Nature of Suffering, 30 – 47. 25. Ibid., 33. 26. Ibid., vii. 27. Ibid., 42, my emphasis. 28. Ibid., 38 – 43. 29. Ibid., 34. 30. Ibid. 31. Ibid., 45. 32. Ibid., 42. 33. Charon, “Narrative Medicine: Form, Function, and Ethics,” 83. 34. See Paul Churchland, The Engine of Reason, The Seat of the Soul: A Philosophical Journey into the Brain (Cambridge, MA: MIT Press, 1995). 35. See chapter 4 for my account of Nuland, How We Die. 36. Charon, “Narrative Medicine: Model for Empathy,” 1898. 37. Ibid. 38. Cassell, Nature of Suffering, 30. 39. Robert D. Truog, “Is It Always Wrong to Perform Futile CPR?” New England Journal of Medicine 362(6):478 (2010). 40. Ibid., 478.

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364 •    N o t e s   t o   P a g e s   3 0 1 – 3 0 5

41. I do not naïvely assume that in all cases, students are purely motivated by care and concern, but some sense of a calling seems to animate the choice of medicine as a profession. 42. See Alasdair MacIntyre, Dependent Rational Animals: Why Human Beings Need the Virtues (Chicago: Open Court Press, 1999). MacIntyre asks and begins to answer a question that has repeatedly been resisted in philosophy: What if we took seriously the fact of dependency as primordial condition for the possibility of independent practical reasoning? 43. I am, of course, dependent on the philosophy of Emmanuel Levinas. See Emmanuel Levinas, Totality and Infinity: An Essay in Exteriority, trans. Alphonso Lingis (Pittsburgh: Duquesne University Press, 1969). Originally published as Totalite et Infini by M. Nijhoff in 1961. See also the following works by Levinas: Ethics and Infinity: Conversations with Philippe Nemo, trans. Richard Cohen (Pittsburgh: Duquesne University Press, 1985), originally published as Ethique et infini by Librairie Arthème Fayard et Radio France in 1982; Otherwise than Being, or Beyond Essence, trans. Alphonso Lingis (Pittsburgh: Duquesne University Press, 1998), originally published as Autrement qu’être by M. Nijhoff in 1974; “Dying for . . .,” in Entre nous: Thinking-of-the-Other, trans. Michael B. Smith and Barbara Harshaw (New York: Columbia University Press, 1998), 207– 218, a speech delivered in 1987 at the Collège International de Philosophie in Paris and originally published in Heidegger: Questions ouvertes, ed. E. Escoubas (Paris: Éditions Osiris, 1988); and “The I and the Totality,” in Entre nous: Thinking-of-the-Other, trans. Smith and Harshaw, 13 – 38, originally published in Revue de metaphysique et de morale 59(4):353– 373 (1954). 44. See Alan Bleakley, Robert Marshall, and Rainer Brömer, “Toward an Aesthetic Medicine: Developing a Core Medical Humanities Undergraduate Curriculum,” Journal of Medical Humanities 27(4):197– 213 (2006). The English spelling of “anaesthetic” gives a better sense of the meaning of the word, an + aesthetic, without sense. 45. This point about how the perceiver of suffering precludes altruism is also made by Milbank, Being Reconciled, 138 –161. 46. Heidegger, Being and Time, 111. 47. Put differently for my purposes, others appear in need of a doctor or medicine because medicine is already there with its accoutrement, technologies, and discourses. For instance, the drug sildenafil citrate was created to treat pulmonary hypertension but found to have a rather interesting side effect, in that it caused erection in men. The makers of sildenafil citrate decided to market it as Viagra® for a new disorder. Men are no longer thought to be aging and impotent but now have a new disorder, erectile dysfunction, because now there is a treatment. What was normal senescence in men becomes an object of medical concern, by virtue of the fact that medicine is there with its technologies. The concern for suffering the loss of an impor-

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tant part of human thriving only becomes a concern when a functional response is possible. Similar stories could be told for psychological and psychiatric disorders, such as Attention Deficit Hyperactivity Disorder. The medical apparatus creates new beings, or new disorders or diseases, for which the medication or product or treatment can be used. In a sense, I am claiming that palliative care was created to care for the dying, and it had to create the dying as a separate class of people for whom such care could be given. The being of medicine points to the others who need medicine. 48. Dreyfus, “On the Ordering of Things,” 81– 82. 49. I am of course dependent on Jean-Luc Marion, Being Given: Toward a Phenomenology of Givenness (Stanford, CA: Stanford University Press, 2002), for this insight. 50. This call is not dissimilar to the call as described by Levinas, but even in Levinas’s articulation of it, we see the radical isolation of an other qua individual from the one who receives the call. Heidegger’s intentionality is an intention that moves from Dasein to things and then to others. Levinas’s intentionality is an intention that moves from the other, who calls me into being, to me. Marion calls this reversal of intentionality Levinas’s greatest philosophical achievement. See Jean-Luc Marion, Being Given, 266 – 269. In the primordial call, the other actually calls the doctor out of his categorizing stupor. For Levinas, this call is a call to justice, and it is a religious call that binds — religare — one to the other, but without the totalization inherent in medicine. 51. For an excellent account of how dependency necessitates communities of practice and virtues that allow one to judge rightly how to act, see MacIntyre, Dependent Rational Animals, 81– 98, 119 –128, and 129 –146. 52. See MacIntyre, Dependent Rational Animals; see also MacIntyre’s After Virtue, 2nd ed., 204 – 225. 53. See Avshalom Caspi et al., “Role of Genotype in the Cycle of Violence in Maltreated Children,” Science 297(5582):851– 854 (2002). See especially the elegant study of Naomi Sadeh et al., “Serotonin Transporter Gene Associations with Psychopathic Traits in Youth Vary as a Function of Socioeconomic Resources,” Journal of Abnormal Psychology 119(3):604– 609 (2010). See also Georg Northoff, “Humans, Brains, and Their Environment: Marriage between Neuroscience and Anthropology?” Neuron 65:748 – 751 (2010); and R. M. Sapolsky, “The Influence of Social Hierarchy on Primate Health,” Science 308(5722):648– 652 (2005). 54. Stephen Toulmin, “How Medicine Saved the Life of Ethics,” Perspectives in Biology and Medicine 25(4):736 – 750 (1982).

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abortion, 10 Achenwall, Gottfried, 80 Agamben, Giorgio, 11, 18, 145, 167, 213 –17 the agonal, concept of, 8, 15, 315n11 Alexandre, Guy, 146 – 51, 153, 155, 341n21 allowing to die and killing, distinguishing, 121, 126 – 30, 211, 278 American Academy of Medical Colleges, 63 American Society for the Prevention of Cruelty to Animals, 106 The American Way of Death (Mitford), 227 analytical approach to medicine, 49 – 56. See also assessment anatomy, medical study of, 14, 49 – 56 And A Time to Die (Kaufman), 10 –13

animal experimentation CPR research involving, 99 –102, 103 – 4 cross-transplantation of dog and ape heads, 145 regulation of, 100 –101, 106 – 7 terminology for organ transplant donors and, 149 – 50 vivisection, 64, 73 – 77, 90 – 91, 96, 103, 106, 224 Annas, George J., 205 Anthropology from a Practical Point of View (Kant), 30 – 31 anticipatory corpse, medical view of body as. See epistemological normativity of dead body in medicine; medical care of the dying The Archaeology of Knowledge (Foucault), 29, 36 Ariès, Philippe, 96 Aristotle, 56, 92, 218, 279, 323n119 kinds of causation, 20, 65 – 66, 223 •    393

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394 •    I n d e x

Asclepian medicine, 276, 361n93 assessment analytical approach to medicine, 49 – 56 community and, 307 concept of, 264, 359n47 of religion and spirituality, 241– 46, 268 – 74 of suffering/distress, 264 – 68 Attention Deficit Hyperactivity Disorder, 365n47 At the Will of the Body (Frank), 294 Augustine of Hippo, v autonomy or sovereignty. See sovereign decision “average man,” concept of, 79, 81, 277 Avicenna (Ibn Sina), 65, 66 Bacon, Francis, 20 Bacon, Roger, 65, 66 Barnard, Christiaan, 153 – 56, 159 – 61 Becker, Ernest, 228, 353n5 bedside or clinic, medicine in space of, 44 – 46, 106 Beecher, Henry K., 154, 156, 157, 158 Being and Time (Heidegger), 33, 305 being-there-with-the-sufferingother, 300 – 305, 306, 307, 310, 311 Bendixen, Henrik, 111 Bernard, Claude Broussais and, 57 determinism of, 69 – 71, 82 Flexner compared, 87 forms, persistence of medicine of, 43 on interior and exterior space of living organism, 76 – 77, 89 – 90

living and nonliving material, no distinction in, 72, 189, 195, 312, 325n39 mechanistic view of life, 73, 76, 110, 164, 311 philosophical aspect of thought of, 98 physiology of, 68 – 73, 86, 180, 224 statistical medicine and, 77, 78 on vivisection, 64, 73 – 77, 96, 103, 106, 224 Bernat, James, 185, 189 – 91, 193, 349n82 Bert, Paul, 325n39 Bibler, Trevor, 361n93 Bichat, Marie François Xavier on anatomical study, 49 – 50, 52 – 53, 96 cardiac, neurological, and pulmonary function studied by, 99, 142 life defined by death for, 67, 68, 110, 189, 195, 223, 224, 311, 312 philosophical aspect of thought of, 98 Physiological Researches on Life and Death, 67, 324n21 vitalism of, 66 – 68, 71, 76 Billings, J. Andrew, 254, 259, 261 biomedical model, 3 – 4, 6, 17–18, 26, 229 – 30, 232 biopolitics, concept of, 43, 211, 212 –19, 229, 286 biopsychosociospiritual model, 26, 227– 52 biomedical model, crisis of, 229 – 30, 232 conceptualization and operationalization of knowledge in, 248 – 52

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Engel’s biopsychosocial model, 229 – 34, 238 experience versus theory of, 3, 6, 18 hospice movement anticipating, 254 – 55 Kübler-Ross’s On Death and Dying and, 227, 229, 235 – 38 medical measurement and normativization of grief, 14 –15, 84, 238 – 41, 328n94 palliative care and, 254, 255, 283 paradoxical relationship between life and death and, 18 patronizing and disempowering aspects of, 5 – 7 as politics, 251– 52 power issues regarding, 6 – 7, 238 religious coping and spiritual assessments, 241– 46 statistical medicine and, 65, 234, 247– 49 Birth of the Clinic (Foucault), 24, 29, 33, 34 – 36, 38 – 41, 47, 96, 216 Blaiberg, Philip, 153 – 54 bloodletting, 78 body, experience of, 287– 95 The Body of Compassion (Shuman), 288 Boissier de Sauvages, François, 38 Bouillaud, Jean Baptiste, 49, 52 bounded zones of death, 193 – 94 brain death challenges to concept of, 189 – 96 change in language of, 169, 182, 184 – 85 as cultural concept, 152 – 52 defining death as, 25, 141, 143, 144, 164 – 65 EEG and, 150 – 51

•    395

Harvard brain death criteria, 144, 146 – 47, 154, 156 – 57, 159 – 60, 198 organ transplantation and, 146 – 52, 153 – 56, 168 – 71, 172 origins of concept of, 144, 147 President’s Commission report (1981) on, 141– 43, 145, 160 – 67, 168, 181, 184, 185, 189, 225 President’s Council on Bioethics (2008) report on, 168 – 70, 182, 184 – 89, 193, 225 Brentano, Franz, 85 Brock, Dan, 170, 194 – 97, 278 Brody, Howard, 128, 129, 130 Brooks, David, 203 – 4 Broussais, François Joseph Victor, 52, 57, 66, 68, 78 Buckle, Henry Thomas, 82 Buck v. Bell (1927), 84 burial alive, fear of, 144 – 45, 343n83 Burt, Robert, 135 Burtt, E. A., 117 Bush, George W., 168, 203 Bush, Jeb, 203 Callahan, Daniel, 15, 96, 110, 115 –16, 117, 120 – 21, 140, 198, 208 Cannon, Walter B., 106 – 7 cardiopulmonary resuscitation (CPR), research on, 99 –106, 109 cardiorespiratory criteria for defining death, 179 – 80, 193, 194, 197 care of the dying. See medical care of the dying The Care of the Self (Foucault), 29 Cartwright, Nancy, 247 Casey, Edward S., 33

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Cassell, Eric, 286, 295 – 300 Catholic Church. See Roman Catholic Church on dying causation. See also metaphysics of efficient causation alienation felt by patients and, 309 embodiment of, 290, 294 epistemological normativity of dead body in medicine and, 90, 223 “ethics” of dying and, 123 – 25, 140 Foucault on, 57, 60 four causes, premodern understandings of, 20, 65 – 66, 223, 336n29 historical development of medicine and, 69 – 71, 76 intention and, 127– 29, 132, 336n29, 337nn33 – 34 killing and allowing to die, distinguishing, 130, 211 philosophical aspect of medicine, abandonment of, 97, 107– 9, 120 physiology and, 69 – 71, 90 CDF (Congregation for the Doctrine of the Faith), 207, 335n14 Celsus, 74 Centers for Medicare and Medicaid Services (CMS), 171, 173, 174, 175 central venous catheterization, 173 – 74 chaplains and chaplaincies in biopsychosociospiritual model, 5 – 7, 235, 236, 238, 241– 42, 244 – 46, 252 intentions of, 285 – 87 palliative care and, 265, 269, 272 – 73 Charles II (king of England), 81

Charon, Rita, 286, 297– 98 Cherny, Nathan, 264 – 65, 267 choice/decision. See sovereign decision Christian theology, medicine, and dying, 6, 74 – 75, 123, 183, 191– 92, 204, 208, 209, 211, 234, 245, 255, 274, 308, 363n19. See also JudeoChristian tradition; Roman Catholic Church on dying Churchill, Larry, 205, 357n12 Churchland, Paul, 297 Ciba Foundation conference (1966), 147, 148, 149, 151, 153, 341n32 Clinical Practice Guidelines for Quality Palliative Care (NCP), 260 – 61, 267, 271 clinic or bedside, medicine in space of, 44 – 46, 106 closed chest cardiac massage, 104– 5 CMS (Centers for Medicare and Medicaid Services), 171, 173, 174, 175 coherence in modern medicine, origins of, 62 – 65 comatose patients coma dépassé, 144, 146, 147, 153, 156, 160 donors and recipients, language of, 155 as “living cadavers,” 149 – 50, 152, 155 organ transplantation and portrayal of, 156 – 57 PVS (persistent vegetative state), 187, 194, 195, 197, 200 – 203, 205, 207, 208, 210, 219 – 22, 282 community of others, right relationship of, 305 – 9, 311–12 Comte, Auguste, 85

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conceptualization and operationalization of knowledge, 248 – 52, 264 Congregation for the Doctrine of the Faith (CDF), 207, 335n14 conservative view of bare life and sovereign decision, 199 – 200, 203 – 7, 211, 212, 220 – 22 Cooley, Denton, 155, 161, 182, 189, 195 Cooper, Marc, 169 Corvisar, Jean-Nicolas, 322n87 Council for the Defense of Medical Research, 100, 106 – 7 CPR (cardiopulmonary resuscitation), research on, 99 –106, 109 Critiques (Kant), 30, 33 Cronin, Daniel, 209 cultural project, definition of death as, 152 – 52, 162 culture of life/culture of death critiques, 7–13, 16 cura, medieval notions of, 255 – 58 Cushing, Harvey, 106 Darvall, Denise Ann, 153 Darwin, Charles, and Darwinism, 83 Dasein, 287, 305, 306, 362n7, 365n50 Daub, David, 151, 161, 163 DC (direct current) electrical shock, 104 – 5, 109, 332n38 DCD (Donation after Cardiac Death), 175, 179 – 80, 282 death. See also brain death; defining death; epistemological normativity of dead body in medicine medicalization of, in contemporary culture, 96 – 97 as taboo subject, 227– 28 vitalism, relationship to, 65 – 68

•    397

Death and the College Student, 228 Death: The Final Stage of Growth (Kübler-Ross), 238 decision/choice. See sovereign decision defining death, 25 – 26, 141– 57. See also brain death bounded zones of death, 193 – 94 cardiorespiratory criteria for, 179 – 80, 193, 194, 197 as cultural project, 152 – 52, 162 Harvard brain death criteria, 144, 146 – 47, 154, 156 – 57, 159 – 60, 198 organ transplantation and, 146 – 52, 153 – 60 in patients declared dead while on life support, 169, 178 – 79 person, as death of, 192 – 93 President’s Commission report (1981) on, 141– 43, 145, 160 – 67, 168, 181, 184, 185, 189, 225 President’s Council on Bioethics (2008) report on, 168 – 70, 182, 184 – 89, 193, 225 public perception and exercise of, 153 – 54, 158 – 60, 166 – 67 as real, 185 robust definition, advantages and disadvantages of, 151– 52 sovereign decision, location of personhood in, 195 – 96, 225 technological advances leading to changes in, 143 – 46 UDDA, 141, 167, 168, 172, 180, 339n2 The Denial of Death (Becker), 228 Department of Health and Human Services, U.S., 172, 174, 175 dependency, 264, 301, 306 – 7, 310, 364n42, 365n51

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Desrosières, Alain, 80 determinism, 69 – 71, 82 de Villiers, Dr., 154, 342n53, 343n61 Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association), 14, 34, 58, 93, 240 Diagnostic Related Groups (DRGs), 242 Dilthey, Wilhelm, 85 direct current (DC) electrical shock, 104 – 5, 109, 332n38 disability and disability-rights community, 10, 13, 15, 293, 315n15, 363n20 Discipline and Punish (Foucault), 29, 32, 36 – 37 distress. See suffering/distress Division of Transplantation of the Healthcare Systems Bureau, 174 DNR (Do Not Resuscitate) orders, 124 Dobson, James C., 204 Donagan, Alan, 337n34 Donation after Cardiac Death (DCD), 175, 179 – 80, 282 donation of organs. See organ transplantation Do Not Resuscitate (DNR) orders, 124 double effect, rule of, 126 – 27, 131 Downie, R. S., 275 – 76, 361n93 Dreyfus, Hubert L., 28, 305, 319n26 dualisms, 66 – 67, 125, 132, 164, 183, 234, 243, 295 – 98 Durkheim, Émile, 83, 85, 242 dying, as term, 99 the dying, care of. See medical care of the dying

EBM (evidence-based medicine), 77, 86, 264, 326n70, 329n129 education, medical, 85 – 88 EEG (electroencephalogram) and brain death, 150 – 51 efficiency and effectiveness, medical hegemony of, 7, 103, 109, 130, 133, 140, 174, 183, 239, 268, 283 efficient causation. See causation; metaphysics of efficient causation egophony, 54, 323n115 electroencephalogram (EEG) and brain death, 150 – 51 Elliott, Carl, 20 Emanuel, Linda, 59, 193 – 94, 195, 197, 217, 225 embodiment experience of, 287– 95 particularity of, 308 suffering/distress as loss of embodied holism, 295 – 300 end. See purpose Engel, George L., 229 – 35, 238, 252, 254, 286 Engelhart, H. Tristram, 164, 165, 188, 344n92 Englaro, Eluana, 25, 200 – 207, 218, 219 – 22 Enlightenment, 20, 34, 35, 39, 41, 42, 45, 58, 63, 214, 220, 246 epidemics, disease understood in terms of, 41, 42, 44, 81 epistemological normativity of dead body in medicine, 279 alienation felt by patients originating in, 309 causation in medicine and, 90, 223 Foucault on, 23 – 24, 28 – 29, 51, 53 – 56, 59 – 60, 91, 223 palliative care and, 278

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society, effect on place of death in, 96 – 97 vivisection and, 64, 73 – 77, 90 – 91 erectile dysfunction, 364n47 essentialist medicine, 56 – 57, 64, 324n8 “ethics” of dying, 24 – 25, 119 – 40 efficient causation and, 123 – 25, 140 evil, death viewed as, 122 – 23 human decision/choice, death viewed as matter of, 121– 25, 336n29 intention and, 127– 29, 132, 336n29, 337nn33 – 34 killing and allowing to die, distinguishing, 121, 126 – 30, 211, 278 loss, failure of modern moral calculus to account for, 3, 94, 195, 220 – 22 midlevel principles, use of, 163 physician-assisted death, 121, 126 – 30, 133 – 37, 140 power issues in, 122, 124 – 25, 135, 136 rational manner, inability to deal with death in, 135 social apparatus of, 130 – 40 sovereign decision and, 116 –18, 121, 125, 132 – 33, 140, 224 – 25 Thomas Aquinas on moral choice and, 336n29 typology of noncurative practices, 130 – 32 eugenics, 65, 83, 247, 280 euthanasia, 10, 25, 116, 133, 134, 136, 210, 277, 351n35 Evangelium Vitae, 8, 315n9 evidence-based medicine (EBM), 77, 86, 264, 326n70, 329n129

•    399

Evidence-Based Medicine Working Group, 77, 79 evil, death viewed as, 122 – 23 family of dying patient definition of death left up to, 197 meetings with, 11–13 organ transplant donation and, 172 – 73, 178 – 79, 179 – 82 suffering/distress of, palliative care’s assessment of, 264, 265, 283 – 84 Fanning, Joseph, 357n12 Feinstein, Alvan, 77 Fitchett, George, 242, 245 – 46, 328n94 five stages of grief/dying, 5, 235 – 38, 314n3 Flexner, Abraham, 51, 86 – 88, 97– 98, 329n129 Flexner, Simon, 98, 106 Flint, Austin, 79 Florence, Maurice, 29 – 30 Focus on the Family, 204 food and water, withholding of. See also sovereign decision Englaro and Schiavo cases, 25, 169, 200 – 207 Roman Catholic Church on, 207–11 VSED (Voluntary Stopping of Eating and Drinking), 131 forms in medicine, 38 – 41, 42, 43, 44, 56 – 57, 58 Foucault, Michel, 23 – 24, 28 – 60. See also specific works on anatomical study and analytical approach to medicine, 14, 49 – 56, 96 on biopolitics, 43, 212 –13, 229 on Broussais, 66 on care of the sick, 256

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Foucault, Michel (cont.) on clinical gaze, 43 – 44, 46, 47, 49 – 55, 59, 64 clinic or bedside, on medicine in space of, 44 – 46, 106 on epistemological normativity of dead body in medicine, 23 – 24, 28 – 29, 51, 53 – 56, 59 – 60, 91, 223 Flexner compared, 86 forms in medicine, tertiary space of, 38 – 41 Heidegger and, 33 – 34, 47, 319n26 as historian and philosopher, 28 – 29 Kant and, 29 – 35, 37, 38 on language of clinic, 47– 49 on organic versus functional disorders, 354n16 phenomenology, understanding of, 30 – 31, 286 political space, on medicine introduced into, 41, 42 – 44 on power issues, 15, 35, 36 – 37, 85, 199, 212 –13, 216 social apparatus defined by, 113 –14 on space and time, 30, 31, 32 – 35, 38 – 41, 52 – 53, 58 – 59 on synthesis of medical theories, 56 – 58, 64 – 65, 226 on theory and practice, 20 on zone of indeterminacy between life and death, 18 Foucault’s Critical Project (Han), 30 Fourcroy, Antoine Francois de, 322n82 Fourteenth Amendment, 133 Fowler, James, 241 Frank, Art, 294 Frankl, Victor, 270

Frank-Starling curve, 90 French Revolution, 39, 41, 42, 45, 63 Freud, Sigmund, 242 Fromm, Eric, 242 functional versus organic disorders, 354n16 Galen, 74 Galton, Francis, 43, 83 – 84 gaze, medical anatomy, study of, 49 – 55, 91 assessment instruments extending, 283 disability-rights activists challenging, 10 Foucault on clinical gaze, 43 – 44, 46, 47, 49 – 55, 59, 64 historical development of medicine and, 88 palliative care and, 276, 361nn92 – 93 particularity of bodies, elimination of, 298 philosophical aspect of medicine, abandonment of, 98 Geertz, Clifford, 242 Giacomini, Mita, 144, 146, 153, 156 – 59 Glasgow Comas Score, 172 “good death,” concept of, 19, 21, 22, 277, 280, 281, 284, 299 Gordon, Archer, 102 – 3 Goulon, M., 144 Gracia, Diego, 256 Graunt, John, 81 Green, Michael B., 192 – 93 Greer, George, 202, 205 – 6 grief five stages of, 5, 235 – 38, 314n3 medical measurement and normativization of, 14 –15, 84, 238 – 41, 328n94

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operationalization and conceptualization of, 249 religious coping and spiritual assessments, 241– 46 Grondin, Dr., 159 – 60 Grosseteste, Robert, 65 Gutting, Gary, 29 Guyton, Arthur, 164, 166, 189, 195, 311 Han, Beatrice, 30 – 31, 37, 213, 286 handiness, Heidegger on, 287, 289 Harvard brain death criteria, 144, 146 – 47, 154, 156 – 57, 159 – 60, 198 health, embodied state of, 293 – 94 Health and Human Services, U.S. Department of, 172, 174, 175 Heidegger, Martin, 20, 33 – 34, 47, 112, 212, 287, 291, 305 – 6, 319n26, 362n7 Hill, Peter, 241 Hippocratic practice of medicine, 9, 44, 56, 58, 276 historical development of medicine, 24, 32 anatomical study and analytical approach, 14, 49 – 56 Asclepian medicine, 276, 361n93 clinic or bedside, medicine in space of, 44 – 46, 106 epidemics, disease understood in terms of, 41, 42, 44, 81 forms in medicine, 38 – 41, 42, 43, 44, 56 – 57, 58 Hippocratic practice, 9, 44, 56, 58, 276 hospitum and cura, medieval notions of, 255 – 58 ICU, 112

•    401

language of clinic, development of, 47– 49 mechanical view of bodies, 73, 76 – 77 medical schools, 85 – 88 philosophical aspect of medicine, abandonment of, 97– 99 physiology, 68 – 77, 85 – 86, 89 – 91, 223 – 24 political space, medicine introduced into, 41, 42 – 44, 46 progressive and regressive senses of, 61– 62 statistical medicine, 42, 43, 77– 85, 226, 280 synthesis of medical theories, 56 – 58, 62 – 65, 85 – 88, 226 vitalism, 65 – 68, 71– 72, 76 vivisection, 64, 73 – 77, 90 – 91, 96, 103, 106 History of Madness (Foucault), 29, 35, 38 The History of Sexuality (Foucault), 29 Hobbes, Thomas, 81, 83, 214, 215, 352nn50 – 51 holism, 164 – 65, 190 – 91, 197, 295 – 300, 344n92, 348n82 homosexuality, regarded as medical defect, 93 Hood, Ralph, 241 hospice movement, 26, 253 – 58, 269 How We Die (Nuland), 119 – 21, 286, 297 human experimentation CPR research involving, 102 – 3, 105 on PVS patients, 219 – 20 humanistic assertion of autonomous self. See sovereign decision Husserl, Edmund, 85

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Ibn Sina (Avicenna), 65, 66 ICUs (intensive care units), 24, 110 –18, 120, 121, 224 Igo, Sarah, 80 immortality, quest for, 16 –17, 110 Improvement in the Quality of Spiritual Care Consensus Group, 269, 271 inflammation, medical understanding of, 39, 40, 57, 78 Inflammatory Bowel Disease, 354n16 Institute for Healthcare Improvement, 174 intensive care units (ICUs), 24, 110 –18, 120, 121, 224 intentions embodiment of, 287– 88 “ethics” of dying and, 127– 29, 132, 336n29, 337nn33 – 34 of health-care professionals regarding care of the dying, 285, 286 – 87, 300 – 305, 306, 364n41 International Congress of LifeSustaining Treatments and Vegetative State, 207 Internet, medical information on, 1 Introduction to Kant’s Anthropology (Foucault), 30 – 31 An Introduction to the Study of Experimental Medicine (Bernard), 68 – 69 Irritable Bowel Syndrome, 354n16 I-Thou relationships, 306, 308 Ivy, Stephen, 241– 42 Jackson, James, 79, 327n87 jaundice, painless, 1 John Paul II (pope), 8 –10, 15, 16, 207– 8, 210

Joint Commission on the Accreditation of Healthcare Organizations (JCAHO), 171, 173, 174, 175, 176, 266 Jonas, Hans, 271 Jude, James, 104 Judeo-Christian tradition, 192, 308, 349n83, 349n89 justified killing, organ transplantation/removal from life support viewed as, 195, 197– 98 Kant, Immanuel, 29 – 35, 37, 38, 85, 94, 161, 216, 220 Kantrowitz, Adrian, 155 – 56, 342n60 Kass, Leon R., 162 Kastenbaum, Robert, 228 Kaufman, Sharon, 10 –13, 15, 18, 112, 115 Keen, William, 106 Kellehear, Allan, 269, 270 – 72 Kevorkian, Jack, 140, 210, 277, 281, 315n15 Khushf, George, 345n11 killing allowing to die distinguished, 121, 126 – 30, 211, 278 justified killing, organ transplantation/removal from life support viewed as, 195, 197– 98 Kinney, John M., 111 Kirshner, Howard, 205 Knickerbocker, G., 104 knowledge anatomy, development of study of, 51 in clinical medicine, 44, 48 – 49 conceptualization and operationalization of, 248 – 52, 264

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death as source of, 14 –15, 21, 22, 27, 54 – 56, 59, 67– 68 formal arrangement of, 39 – 40, 42, 52 Foucault on, 29 – 33, 37 justification of violence of, 20 – 21, 94 – 95 objectification of patient and, 92 power and, 37, 38, 71, 90 – 91, 251 purpose and, 251 speculation, dangers of, 70, 71, 78 vivisection, justification of, 75 Koenig, Harold, 242, 243, 244 Kohlberg, Lawrence, 241– 42 Korein, Julius, 143 Kouwenhoven, William, 104 Krakauer, Eric, 21, 93, 285, 302 Kübler-Ross, Elizabeth, 5, 26, 227– 29, 235 – 38, 252, 253, 286, 328n94, 353n5, 355n35 Kundera, Milan, 320n42 Lederer, Susan E., 330n15 Lee, Richard A., Jr., 329n3 Leviathan (Hobbes), 214 Levinas, Emmanuel, 305, 308, 364n43, 365n50 liberal, autonomous self. See sovereign decision liberal view of bare life and sovereign decision, 199 – 200, 203 – 7, 211, 212, 220 – 22 life-at-all-costs mentality, 123 – 24, 208, 210, 227, 280 Lillehei, C.W., 154, 161 living and nonliving material, lack of distinction between, 72, 97, 189, 195, 325n39 “living cadavers,” 149 – 50, 152, 155 Lock, Margaret, 14, 144, 146, 152 – 54, 176 – 78

•    403

Locke, John, 215 –16 loss, failure of modern moral calculus to account for, 3, 94, 195, 220 – 22, 294 – 95, 311 loss of embodied holism, suffering/distress as, 295 – 300 Louis, Pierre Charles Alexandre, 42, 43, 77– 79, 82, 87, 180, 247 Lugo, Juan de, 209 Lyons, Eva, 136 Machado, Calixto, 146 – 47, 149 MacIntyre, Alasdair, 94, 220, 246, 307, 310, 349n83, 364n42 Madden, Ed, vi – vii Mar Adentro (film), 10 Matthews, J. Rosser, 78 McSherry, Elisabeth, 242, 245 The Meaning of Illness (Toombs), 287, 363n21 mécanique sociale, 77, 82, 226, 250, 264, 268, 276, 280 mechanical view of bodies and life abandonment of philosophical aspect of medicine and, 97, 108 –10, 113, 116 –17 defining death and, 146, 164 embodied life versus, 311 “ethics” of dying and, 124 in historical development of medicine, 73, 76 medical care of the dying, 1– 27, 285 – 313 being-there-with-the-sufferingother, 300 – 305, 306, 307, 310, 311 biopsychosociospiritual model, 6, 18, 26, 65, 227– 52. See also biopsychosociospiritual model community of others, right relationship of, 305 – 9, 311–12 critical versus constructive approach to, 285 – 87

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medical care of the dying (cont.) culture of life/culture of death critiques of, 7–13, 16 death and dead body, medicine shaped by, 7– 8, 21– 23 defining death, 25 – 26, 141– 57. See also defining death embodiment, experience of, 287– 95 epistemological normativity of dead body and. See epistemological normativity of dead body in medicine “ethics” of, 24 – 25, 119 – 40. See also “ethics” of dying Foucault and, 23 – 24, 28 – 60. See also Foucault, Michel goods and practices, relationship between, 19 – 23 historical development of, 24, 61– 88. See also historical development of medicine intentions of health-care professionals regarding, 285, 286 – 87, 300 – 305, 306, 364n41 methodology of studying, 23 – 27 Nancy, case study of, 1– 7, 17 organ transplantation and, 25, 168 – 96. See also organ transplantation palliative care, 26, 253 – 78. See also palliative care paradoxical relationship between life and death in, 13 –19 philosophical aspect of medicine and, 24, 96 –118. See also philosophical aspect of medicine, abandonment of power issues in. See power issues purpose of life and. See purpose

space and time in. See space and time subject and object in, 91– 94, 287– 95 suffering/distress and. See suffering/distress Medical Education in the United States and Canada (Flexner), 86, 97– 98 medicalization of death in contemporary culture, 96 – 97 medical need and availability of functional response, 364n47 medical schools, 85 – 88 médicine d’observation. See statistical medicine Merlau-Ponty, Maurice, 287 metaphysics, medical abandonment of. See philosophical aspect of medicine, abandonment of metaphysics of efficient causation. See also causation; defining death; “ethics” of dying; motion, understanding of; power issues; purpose; sovereign decision; vitalism in Catholic Church teaching, 211 in medicine, 20 – 23, 89, 93 – 94, 107– 8, 117, 132, 166 – 67, 300, 310 and palliative care, 278 and utilitarianism, 94 violence of, 97, 124, 290, 294, 299 midlevel principles, medical ethicists’ use of, 163 Milbank, John, 80, 212 Miller, Franklin G., 130, 133, 134, 170, 194 – 98, 217, 225, 278 Million Dollar Baby (film), 10 Minow, Martha, 133 – 36, 139 – 40 Mitda-sein, 287, 305, 306 Mitford, Jessica, 227

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Mollaret, P., 144 Morabia, Alfredo, 77– 78, 326n70, 326n73 moral issue, death as. See “ethics” of dying Morgagni, Giovanni Battista, 49, 52 – 53 motion, understanding of, 65 – 67, 76, 122, 279 – 80 multiple medicines, concept of, 62 – 63 Murray, Joseph, 150, 159 Nagel, Thomas, 322n89 Napier, Stephen, 191, 193 narrative, as shroud, 297 National Conference of Commissioners on Uniform State Laws, 167 National Consensus Project for Quality Palliative Care (NCP), 260 – 61, 267, 268, 269, 271 National Health Service in Britain, 43 National Institutes of Health (NIH), U.S., 62, 110, 111 National Quality Forum (NQF), 266 – 67 natural selection, concept of, 82 – 84 NCP (National Consensus Project for Quality Palliative Care), 260 – 61, 267, 268, 269, 271 “The Need for a New Medical Model” (Engel), 229 – 34 neuroendocrine cancer of the pancreas, 2 Newton, Isaac, and Newtonian physics, 65 – 66, 224, 279 Nietzsche, Friedrich, 20, 35 Nightingale, Florence, 112 NIH (National Institutes of Health), U.S., 62, 110, 111

•    405

nominalism, 49, 59 – 60, 97, 247, 250, 352n50 Non-Heart-Beating Donation (Donation after Cardiac Death or DCD), 175, 179 – 80, 282 Normandin, Sebastian, 76 normativity of dead body, epistemological. See epistemological normativity of dead body in medicine Nosographie (Pinel), 38 – 39 Nosologie (François Boissier de Sauvages), 38 Nozick, Robert, 215 NQF (National Quality Forum), 266 – 67 Nuland, Sherwin, 119 – 21, 286, 297 numerical method. See statistical medicine object and subject in medicine, 91– 94, 287– 95 Oliver, Simon, 65 – 66, 76 On Death and Dying (KüblerRoss), 227, 229, 235 – 38, 355n35 On Dying and Denying (Weisman), 228 operationalization and conceptualization of knowledge, 248 – 52, 264 OPOs (Organ Procurement Organizations), 171– 76, 346n17 The Order of Things (Foucault), 29, 30, 36, 38, 229 Oregon Death with Dignity Act, 137– 40, 338n39, 351n35 Oregon Hemlock Society, 210, 351n35 Organ Donation Breakthrough Collaboratives, 174

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organic versus functional disorders, 354n16 Organ Procurement Organizations (OPOs), 171– 76, 346n17 organ transplantation, 25, 168 – 96 autonomous or sovereign self and, 195 – 96 brain death and, 146 – 52, 153 – 56, 168 – 71, 172 challenges to concept of brain death and, 189 – 96 comatose patients, portrayal of, 156 – 57 DCD, 175, 179 – 80, 282 defining death and, 146 – 52, 153 – 60 dog and ape heads, crosstransplantation of, 145 donors and recipients, language of, 155 institutional structures supporting, 171– 76 as justified killing, 195, 197– 98 medical treatment of potential donor and, 172 – 74 metaphysical problematic of, 180 – 84 physiology and ability to conceive of, 91 President’s Council on Bioethics (2008) report and, 168 – 70, 182, 184 – 89, 193, 225 process of harvesting organs, 176 – 78 purpose and, 184, 282 sovereign decision, location of personhood in, 195 – 96, 225 UAGA, 174, 179 Oxford Textbook of Palliative Medicine, 258, 259, 261– 63 painless jaundice, 1 pain management, 131, 253– 55, 277

palliative care, 26, 253 – 78 as biopsychosociospiritual, 254, 255, 283 development of concept of, 258 – 64 hospice movement and, 26, 253 – 58, 269 as response to technological treatment of dying, 18 as social science, 264, 283 spiritual care and assessment as part of, 268 – 74, 284 suffering/distress, assessment of, 264 – 68 total care, concept of, 254 – 55, 257, 259, 264, 266, 275, 309 totalitarian aspects of, 18, 255, 274, 275 – 78, 283 – 84 pancreatic adenocarcinoma, 1, 2 Pargament, Kenneth, 242, 243, 244 PAS (physician-assisted suicide). See physician-assisted death PEG (percutaneous endoscopic gastrostomy) tube, 201, 203, 204, 205 Pellegrino, Edmund, 168 pentobarbital, 100 percutaneous endoscopic gastrostomy (PEG) tube, 201, 203, 204, 205 Perez, Lisa, 242, 243, 244 Perkins, Tony, 203 – 4 permanent vegetative state, 200 Pernick, Martin, 145, 154, 159, 343n83 Perry, Joshua, 205, 357n12 persistent vegetative state (PVS), 187, 194, 195, 197, 200 – 203, 205, 207, 208, 210, 219 – 22, 282 person, death defined as death of, 192 – 93 Petty, William, 81

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philosophical aspect of medicine, abandonment of, 24, 96 –118 consequences of, 309 –10 CPR, research on, 99 –106 historical process of, 97– 99 ICUs and, 24, 110 –18 mechanical view of bodies and life replacing, 97, 108 –10, 113, 116 –17 medicalization of death in contemporary culture, 96 – 97 reductive nature of research process and, 106 –10 The Philosophy of Palliative Care (Randall and Downie), 275 – 76 physician-assisted death death-focused nature of medicine and, 13 “ethics” of dying and, 121, 126 – 30, 133 – 37, 140 Oregon Death with Dignity Act, 137– 40, 338n39, 351n35 organ transplantation and, 195 palliative care and, 277– 78 sovereign decision and, 26, 198, 210 Supreme Court, U.S., on, 133 – 34, 137, 336n22 Physiological Researches on Life and Death (Bichat), 67, 324n21 physiology, 68 – 77, 85 – 86, 89 – 91, 223 – 24 Piaget, Jean, 241– 42 Pickstock, Catherine, 40, 52 Pinel, Philippe, 32, 38 – 39 Pius XII (pope), 123, 126, 159, 208 Plato and Platonism, 17, 39, 58, 65, 66 Platt, Roger, 151, 161, 163 “political arithmetic,” statistics viewed as, 81, 247, 280

•    407

political nature of sovereign decision, 199 – 200, 203 – 7, 211, 212, 220 – 22 political space, medicine in, 41, 42 – 44, 46, 85 – 88, 107, 199 – 200 politics, biopsychosociospiritual model as, 251– 52 Polkinghorne, Donald, 248 Porter, Theodore, 80, 328n94 positivism and antipositivism, 85 postpositivist conception of science, 248 potassium chloride, 127, 130, 132, 178 Powazki, Ruth, 268, 359n47 power issues in biopsychosociospiritual model, 6 – 7, 238 “ethics” of dying and, 122, 124 – 25, 135, 136 Foucault on, 15, 35, 36 – 37, 85, 199, 212 –13, 216 grief reactions, normativization of, 14 –15 knowledge and power, relationship between, 37, 38, 71, 90 – 91, 251 metaphysics of medicine, arising from, 21– 23 normal, medical power to identify, 10 palliative care, totalitarian aspects of, 18, 255, 274, 275 – 78 paradoxical relationship between life and death and, 15 in social sciences and psychology, 251 sovereign decision and, 212 –19 sovereign power to make decisions. See sovereign decision statistical medicine and, 85

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President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1981), 141– 43, 145, 160 – 67, 168, 181, 184, 185, 189, 225 President’s Council on Bioethics (2008), 168 – 70, 182, 184 – 89, 193, 225 pressors, 173 Principia Mathematica (Newton), 65 procaine, 100 Pruyser, Paul, 245 Psychological Assessment Resources, 238 – 39 The Psychological Autopsy (Weisman and Kastenbaum), 228 psychology. See social sciences and psychology public health, 41, 42, 88 Puchalski, Christina, 271– 72 pulmonary arterial pressure monitoring, 173 purpose community of others, right relationship of, 305 – 9 death providing focus on, 3, 6 embodiment of, 291 “ethics” of dying and, 123 – 24, 126 knowledge and, 251 organ donation, metaphysical problematic of, 184, 282 procedural ethic and, 116 PVS patients, Roman Catholic Church on treatment of, 211 reductive nature of research with loss of focus on, 109 refocusing of medicine on, 17 Putnam, Constance, 277– 78

PVS (persistent vegetative state), 187, 194, 195, 197, 200 – 203, 205, 207, 208, 210, 219 – 22, 282 quality of life culture of life/culture of death critiques of, 9, 12 paradoxical relationship between life and death and, 15 –16 political nature of decisions about, 203 – 7 Roman Catholic Church on, 209 suffering/distress, palliative care’s assessment of, 264 Quality Reality Checks, Inc., 174 Quetelet, Adolphe, 78 – 79, 81– 82 Quill, Timothy, 128 – 33, 140, 277– 78 Rabinow, Paul, 28 Randall, Fiona, 275 – 76, 361n93 randomized controlled clinical trials, 3 – 4 Rawls, John, 215 RCOPE, 84, 242 – 44 reality of death, 185 recipients and donors, language of, 155 religion and spirituality assessments of, 241– 46, 268 – 74, 284 social sciences and, 250 – 51 Researches on the Effects of Bloodletting in Some Inflammatory Disease . . . (Louis), 78 right relationship of community of others, 305 – 9, 311–12 rights, concept of, 75 Rockefeller Institute for Medical Research, 98

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Index

Roman Catholic Church on dying CDF, 207, 335n14 Englaro case and, 201 Evangelium Vitae, 8, 315n9 John Paul II, 8 –10, 15, 16, 207– 8, 210 Pius XII, 123, 126, 159, 208 PVS patients, treatment of, 207–11 Rose-Innes, A. P., 155, 342n53, 343n61 Rosoff, S. D., 151 Royal Society for the Prevention of Cruelty to Animals (Britain), 106 Sartre, Jean-Paul, 287 Saunders, Dame Cicely, 26, 253– 55, 257– 59, 263– 64, 269, 270 Schiavo, Michael, 201– 3, 219 Schiavo, Terri, 25, 169, 201– 7, 218 – 22 Schindlers (parents of Terri Schiavo), 201– 3, 219, 221 scholasticism, 20, 44, 70, 76 Schwab, R. S., 151 Schwerma, H., 99 Scott, Charles E., 33 “7 x 7 model,” 245 – 46 Shewmon, D. Alan, 169, 186 – 87, 189 – 91, 193, 348nn82 – 83 Shipman, Harold, 136 Shuman, Joel James, 288 – 89, 290 – 91 sign and symptom, 47– 48, 54 sildenafil citrate, 364n47 Simon, Jon, 37, 320n42 Smith, Dale C., 9, 321n73 Smith, Dame Janet, 136 Smith, Wesley J., 8 –10, 13, 15, 16 social apparatus of “ethics” of dying, 130 – 40 ICU as, 113 –18

•    409

social liberals’ and conservatives’ views of bare life and sovereign decision, 199 – 200, 203 – 7, 211, 212, 220 – 22 social mechanics (mécanique sociale), 77, 82, 226, 250, 264, 268, 276, 280 social sciences and psychology. See also biopsychosociospiritual model bodily and biological function defined in terms of social function, 93 – 94 influence of statistics on, 82 – 85, 226 objectification of patient in, 92 – 93 operationalization and conceptualization of knowledge in, 248 – 52, 264 palliative care as part of, 264, 283 power in, 251 statistical medicine in, 79 – 80, 226, 280 Société Royale de Médecine, France, 42, 43 society, place of death in, 96 – 97 sovereign decision, 25 – 26, 197– 222 biopolitics of, 212 –19 Englaro and Schiavo cases, 25, 169, 200 – 207, 218 – 22 in “ethics” of dying, 116 –18, 121, 125, 132 – 33, 140, 224 – 25 human decision/choice, death viewed as matter of, 121– 25, 197– 200, 280 – 82, 336n29 location of personhood in, 195 – 96, 225 persons unable to choose for themselves, 198, 199, 205 political nature of, 199 – 200, 203 – 7, 211, 212, 220 – 22

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410 •    I n d e x

sovereign decision (cont.) power issues and, 212 –19 PVS patients and, 187, 194, 195, 197, 200 – 203, 205, 207, 208, 210, 219 – 22, 282 Roman Catholic Church on, 207–11 wishes of person prior to accident or illness, consideration of, 202 – 3 space and time anatomical study and localization of disease in body, 52 – 53 clinic or bedside, medicine in space of, 44 – 46 embodiment and, 291– 92 Foucault on, 30, 31, 32 – 35, 38 – 41, 52 – 53, 58 – 59 ICU as space, 110 –13 interior and exterior space, Bernard’s concept of, 76 – 77, 89 – 90 in language of clinic, 48 in medical care of the dying, 13, 15, 23 – 24 political space, medicine in, 41, 42 – 44, 46, 85 – 88, 107, 199 – 200 speculative philosophy, 70, 71, 78 Spencer, Herbert, 82 spirituality and religion assessments of, 241– 46, 268 – 74, 284 social sciences and, 250 – 51 Stages of Faith (Fowler), 241 state, death as, 193 statistical medicine biopsychosociospiritual model and, 65, 234, 247– 49 historical development of medicine and, 42, 43, 77– 85, 226, 280

palliative care and, 264 in social sciences and psychology, 79 – 80, 226, 280 sterilization, eugenic, 84 St. Joseph’s Hospice, London, 253, 255 – 56 subject and object in medicine, 91– 94, 287– 95 suffering/distress being-there-with-the-sufferingother, 300 – 305, 306, 307, 310, 311 as loss of embodied holism, 295 – 300 palliative care’s assessment of, 264 – 68 suicide. See also physician-assisted death Durkheim’s study of, 83 sovereign decision as prior cause of, 281 Sulmasy, Daniel, 127 Supreme Court, U.S., decisions of, 84, 133 – 34, 137, 336n22 symptom and sign, 47– 48, 54 Szasz, Thomas, 230 taboo subject, death as, 227– 28 Tasma, David, 253 – 54, 263 – 64 telos. See purpose terminal sedation (TS), 131– 32 Texas Revised Inventory of Grief, 84, 239 – 41 TGMC (Transplant Growth and Management Collaborative), 174 – 75 Thomas Aquinas, 65, 336n29 thoracotomy, 104, 105, 332n38 time. See space and time Toombs, Kay, 287– 89, 291, 363n21 total brain failure, 169, 182, 185. See also brain death

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total care, concept of, 254 – 55, 257, 259, 264, 266, 275, 309 totalitarian aspects of palliative care, 18, 255, 274, 275 – 78, 283 – 84 total pain, concept of, 254 – 55 Toulmin, Steven, 313 transplantation of organs. See organ transplantation Transplant Growth and Management Collaborative (TGMC), 174 – 75 Tribe, Laurence, 278 Truog, Robert, 170, 194 – 200, 217, 218, 222, 225, 278, 299 TS (terminal sedation), 131– 32 Tuke, William, 32 Twice Dead (Lock), 152, 176 – 78 Uniform Anatomical Gift Act (UAGA), 174, 179 Uniform Determination of Death Act (UDDA), 141, 167, 168, 172, 180, 339n2 The Use of Pleasure (Foucault), 29 utilitarianism, 75, 90, 94, 150, 169, 220 Vacco v. Quill (1997), 133 – 34, 137, 336n22 VAE (Voluntary Active Euthanasia), 126, 132, 137, 140, 338n39 Valsalva, Antonio Maria, 49

•    411

Vandenbroucke, Jan, 77 Veatch, Robert, 121– 25, 129, 180, 191– 93, 208, 217, 348n82, 349n89 Viagra®, 364n47 view from nowhere, concept of, 23, 48, 322n89 vitalism, 65 – 68, 71– 72, 76 vivisection, 64, 73 – 77, 90 – 91, 96, 103, 106, 224 Voluntary Active Euthanasia (VAE), 126, 132, 137, 140, 338n39 Voluntary Stopping of Eating and Drinking (VSED), 131 Walsh, Declan, 268, 359n47 Walters, Tony, 269 – 70, 271 Washington v. Glucksberg (1997), 133 – 34, 137, 336n22 Washkansky, Louis, 153 Weber, Max, 85 Weisman, Avery, 228, 235, 353n5 Whipple procedure, 2 whispered pectoriloquy, 54, 323n115 whole-brain death. See brain death Wikler, Daniel, 192 – 93 Wildes, Kevin, 209 –10 World Health Organization, 259 Young, Katharine, 63 Zerbini, Dr., 154 – 55 Zussman, Robert, 110 –11, 113, 143

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Jeffrey P. Bishop is Tenet Endowed Chair in Health Care Ethics and director of the Albert Gnaegi Center for Health Care Ethics at Saint Louis University.

“With extraordinary philosophical sophistication as well as knowledge of modern medicine, Bishop argues that the body that shapes the work of modern medicine is a dead body. He defends this claim decisively and with urgency. I know of no book that is at once more challenging and informative than The Anticipatory Corpse. To say this book is the most important one written in the philosophy of medicine in the last twenty-five years would not do it justice. This book is destined to change the way we think and, hopefully, practice medicine.” —Stanley Hauerwas, Duke Divinity School “Jeffrey Bishop carefully builds a detailed, scholarly case that medicine is shaped by its attitudes toward death. Clinicians, ethicists, medical educators, policy makers, and administrators need to understand the fraught relationship between clinical practices and death, and The Anticipatory Corpse is an essential text. Bishop’s use of the writings of Michel Foucault is especially provocative and significant. This book is the closest we have to a genealogy of death.” —Arthur W. Frank, University of Calgary “Jeffrey Bishop’s book constitutes a public ethical bombshell. For the first time, certain common mainline medical practices are thoroughly exposed to view as questionable, because grounded in the normativity of the dead body. And Bishop unerringly explains why they are the consequence of a secular nonrecognition of the reality of life and a liberal ethics of mere rights and utility, which fails to value personhood. I would imagine that many readers horrified by the former exposure will then listen sympathetically to the latter exposition.” —John Milbank, University of Nottingham “Jeffrey Bishop has produced a masterful study of how the living body has been placed within medicine’s metaphysics of efficient causality and within its commitment to a totalizing control of life and death, which control has only been strengthened by medicine’s taking on the mantle of a biopsychosociospiritual model. This volume’s treatment of medicine’s care of the dying will surely be recognized as a cardinal text in the philosophy of medicine.” —H. Tristram Engelhardt, Jr., Rice University, Baylor College of Medicine

JEF F R EY P. BISHOP is Tenet Endowed Chair in Health Care Ethics and director of the Albert Gnaegi Center for Health Care Ethics at Saint Louis University.

University of Notre Dame Press Notre Dame, Indiana 46556 undpress.nd.edu

J e f f r e y P. B i s h o P

the anticipatory corpse Medicine, Power, and the care of the dying