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A Death Retold

Jesica Santillan, the Bungled Transplant, and Paradoxes of Medical Citizenship

Edited by Keith Wailoo, Julie Livingston, and Peter Guarnaccia

Publication Year: 2006

In February 2003, an undocumented immigrant teen from Mexico lay dying in a prominent American hospital due to a stunning medical oversight--she had received a heart-lung transplantation of the wrong blood type. In the following weeks, Jesica Santillan's tragedy became a portal into the complexities of American medicine, prompting contentious debate about new patterns and old problems in immigration, the hidden epidemic of medical error, the lines separating transplant "haves" from "have-nots," the right to sue, and the challenges posed by "foreigners" crossing borders for medical care. This volume draws together experts in history, sociology, medical ethics, communication and immigration studies, transplant surgery, anthropology, and health law to understand the dramatic events, the major players, and the core issues at stake. Contributors view the Santillan story as a morality tale: about the conflicting values underpinning American health care; about the politics of transplant medicine; about how a nation debates deservedness, justice, and second chances; and about the global dilemmas of medical tourism and citizenship. Contributors: Charles Bosk, University of Pennsylvania Leo R. Chavez, University of California, Irvine Richard Cook, University of Chicago Thomas Diflo, New York University Medical Center Jason Eberl, Indiana University@-Purdue University Indianapolis Jed Adam Gross, Yale University Jacklyn Habib, American Association of Retired Persons Tyler R. Harrison, Purdue University Beatrix Hoffman, Northern Illinois University Nancy M. P. King, University of North Carolina at Chapel Hill Barron Lerner, Columbia University Mailman School of Public Health Susan E. Lederer, Yale University Julie Livingston, Rutgers University Eric M. Meslin, Indiana University School of Medicine and Indiana University@-Purdue University Indianapolis Susan E. Morgan, Purdue University Nancy Scheper-Hughes, University of California, Berkeley Rosamond Rhodes, Mount Sinai School of Medicine and The Graduate Center, City University of New York Carolyn Rouse, Princeton University Karen Salmon, New England School of Law Lesley Sharp, Barnard and Columbia University Mailman School of Public Health Lisa Volk Chewning, Rutgers University Keith Wailoo, Rutgers University This collection of essays provides a multidisciplinary conversation about Jesica Santillan, the undocumented immigrant teen who died after receiving a heart transplant of the wrong blood type. Contributors from the fields of history, sociology, surgery, ethics, anthropology, media, and law offer differing perspectives on common themes that give a cohesive structure to the collection. In sixteen essays, they discuss the promise and problems of high-tech medicine, tort reform and malpractice suits, distribution of scarce resources, personal and systemic errors in health care, and the impact of highly publicized media dramas. Without placing blame, the essayists seek to understand the events and issues as played out in key locales and practices: in hospitals wary of committing errors, in transplant procedures concerned with timely delivery of organs, in print and broadcast media bent on satisfying public interest in stories of life-saving medicine or medical scandal, and in the global turn toward medical tourism. In February 2003, an undocumented immigrant teen from Mexico lay dying in a prominent American hospital due to a stunning medical oversight--she had received a heart-lung transplantation of the wrong blood type. In the following weeks, Jesica Santillan's tragedy became a portal into the complexities of American medicine, prompting contentious debate about new patterns and old problems in immigration, the hidden epidemic of medical error, the lines separating transplant "haves" from "have-nots," the right to sue, and the challenges posed by "foreigners" crossing borders for medical care. This volume draws together experts in history, sociology, medical ethics, communication and immigration studies, transplant surgery, anthropology, and health law to understand the dramatic events, the major players, and the core issues at stake. In February 2003, an undocumented immigrant teen from Mexico lay dying in a prominent American hospital due to a stunning medical oversight--she had received a heart-lung transplantation of the wrong blood type. In the following weeks, Jesica Santillan's tragedy became a portal into the complexities of American medicine, prompting contentious debate about new patterns and old problems in immigration, the hidden epidemic of medical error, the lines separating transplant "haves" from "have-nots," the right to sue, and the challenges posed by "foreigners" crossing borders for medical care. This volume draws together experts in history, sociology, medical ethics, communication and immigration studies, transplant surgery, anthropology, and health law to understand the dramatic events, the major players, and the core issues at stake. Contributors view the Santillan story as a morality tale: about the conflicting values underpinning American health care; about the politics of transplant medicine; about how a nation debates deservedness, justice, and second chances; and about the global dilemmas of medical tourism and citizenship. Contributors: Charles Bosk, University of Pennsylvania Leo R. Chavez, University of California, Irvine Richard Cook, University of Chicago Thomas Diflo, New York University Medical Center Jason Eberl, Indiana University–Purdue University Indianapolis Jed Adam Gross, Yale University Jacklyn Habib, American Association of Retired Persons Tyler R. Harrison, Purdue University Beatrix Hoffman, Northern Illinois University Nancy M. P. King, University of North Carolina at Chapel Hill Barron Lerner, Columbia University Mailman School of Public Health Susan E. Lederer, Yale University Julie Livingston, Rutgers University Eric M. Meslin, Indiana University School of Medicine and Indiana University–Purdue University Indianapolis Susan E. Morgan, Purdue University Nancy Scheper-Hughes, University of California, Berkeley Rosamond Rhodes, Mount Sinai School of Medicine and The Graduate Center, City University of New York Carolyn Rouse, Princeton University Karen Salmon, New England School of Law Lesley Sharp, Barnard and Columbia University Mailman School of Public Health Lisa Volk Chewning, Rutgers University Keith Wailoo, Rutgers University

Published by: The University of North Carolina Press

Cover

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p. 1-1

Title Page, Copyright

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pp. 2-5

Contents

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pp. v-viii

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Introduction: Chronicles of an Accidental Death

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pp. 1-16

In February 2003 Jesica Santillan, a seventeen-year-old Mexican immigrant living illegally in the United States, lay unconscious in a room at the Duke University Medical Center in Durham, North Carolina. She was dying because of a stunning medical oversight. ...

Part I. Medical Error and the American Transplant Theater

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America’s Angel or Thieving Immigrant?: Media Coverage, the Santillan Story, and Publicized Ambivalence toward Donation and Transplantation

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pp. 19-45

Organ donation has always faced a difficult battle in vying for positive media coverage. At the center of key tensions over how we tend to think about the goals of modern medicine and how we think about the human body, organ donation has often produced a profound ambivalence. ...

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Hobson’s Choices: Matching and Mismatching in Transplantation Work Processes

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pp. 46-69

The February 7, 2003, event at the Duke University Medical Center in North Carolina made clear the potential for donor-recipient mismatch during organ transplantation. This ‘‘celebrated case’’ changed the public perception of risk and hazard in health care. Like other celebrated cases, it played into a wide range of stakeholder concerns that includes U.S. immigration policies, ...

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The Transplant Surgeon’s Perspective on the Bungled Transplant

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pp. 70-81

On the evening of February 6, 2003, Dr. James Jaggers received a telephone call from Carolina Donor Services, the local organ procurement organization (opo) that services Duke University Medical Center and the surrounding area.1 Dr. Jaggers was the head of pediatric heart and heart-lung transplantation at Duke, ...

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From Libby Zion to Jesica Santillan: Many Truths

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pp. 82-96

At first glance, the Jesica Santillan case is a textbook example of how experts believe that medical errors occur. There was a human error, when no one at Duke University Medical Center checked that the donor heart and lungs matched Jesica’s blood type. But, in fact, this error actually masked a larger systems flaw, ...

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All Things Twice, First Tragedy Then Farce: Lessons from a Transplant Error

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pp. 97-116

In a recent book on capital punishment, Scott Turow reversed his long-standing support for the practice. While the reasons to oppose capital punishment are numerous, there was one in Turow’s brief that I found particularly intriguing. Celebrated cases, those that attract the public’s attention because the crimes in question stand out as particularly loathsome instances of a hanging offense, ...

Part II. Justice and Second Chances Across the Border

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The Politics of Second Chances: Waste, Futility, and the Debate over Jesica’s Second Transplant

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pp. 119-141

In the days after the surgery, Jesica Santillan’s second heart and lung transplant on February 21, 2003, became a flashpoint of controversy that helped generate a wide range of conflicting fictions, fantasies, and moral meanings. Two weeks after Jesica had received the first transplant with mismatched blood type organs, this second operation, much more than the first, ...

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Tucker’s Heart: Racial Politics and Heart Transplantation in America

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pp. 142-157

Organ transplantation, especially moving the heart from one body to another, exemplifies American investment in high-tech medicine. Although the first human heart transplant was performed in a South African, rather than American, hospital, by surgeon Christiaan Barnard, the 1967 exploit was made possible only by the training he received in transplant surgery programs in the United States. ...

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Justice in Organ Allocation

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pp. 158-179

As a philosopher and medical educator, I teach a broad range of topics in medical ethics with medical students, house staff, and faculty. It is not surprising that issues related to transplantation frequently arise in my teaching because my home institution, Mount Sinai, is a major transplant center that has had its own share of controversy. ...

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Playing with Matches without Getting Burned: Public Confidence in Organ Allocation

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pp. 180-204

According to one journalist, Jesica Santillan ‘‘died after a botched heart and lung transplant that shook the nation’s confidence in the organ donation system.’’1 Even before Jesica Santillan became a household name, members of America’s transplant establishment recognized that public controversy over a range of issues could undermine confidence in the transplant enterprise. ...

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Consuming Differences: Post-Human Ethics, Global (In)justice, and the Transplant Trade in Organs

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pp. 205-234

Even as Jesica Santillan’s story played itself out in the American media, a powerful global crisis was unfolding—an international commerce in human organs. The globalization of organ and tissue markets turns the Santillan story on its head, and provides crucial insight into the ways in which other kinds of people—wealthy, first world, well-insured, ...

Part III. Citizens and Foreigners/Eligibility and Exclusion

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Sympathy and Exclusion: Access to Health Care for Undocumented Immigrants in the United States

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pp. 237-254

When the editors approached me about writing this essay, I had already been researching immigrants’ access to medical services for my book on the history of the right to health care in the United States. Initially, I expected to show how the Jesica Santillan case fits into that history. It turned out, however, that Jesica’s story does not actually fit very neatly. ...

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Eligibility for Organ Transplantation to Foreign Nationals: The Relationship between Citizenship, Justice, and Philanthropy as Policy Criteria

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pp. 255-275

The events and commentary surrounding Jesica Santillan’s access to multiple organ transplants raise profound questions about the criteria used to justify her receiving these organs, and whether her status as a citizen of another country should have had any bearing on whether she was eligible to receive the organs and the related care. ...

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Imagining the Nation, Imagining Donor Recipients: Jesica Santillan and the Public Discourse of Belonging

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pp. 276-296

Jesica Santillan’s story is simple but tragic: Jesica, seventeen years old, suffered from a birth defect that left her heart and lungs unable to function properly. Her only chance for survival was a transplant to replace the defective organs. She underwent surgery at Duke University Medical Center on February 7, 2003.1 ...

Part IV. Speaking for Jesica

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Babes and Baboons: Jesica Santillan and Experimental Pediatric Transplant Research in America

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pp. 299-328

Organ transplantation within the American context is regularly proclaimed as a miraculous medical procedure, and indeed for many patients with life-threatening illness it can offer a remarkable extension of life. Bearing the potential to save, and thus enhance or extend individual lives, the transplant miracle nevertheless depends on radical surgical interventions. ...

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Jesica Speaks?: Adolescent Consent for Transplantation and Ethical Uncertainty

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pp. 329-348

In February 2003, freelance writer Nancy Rommelmann fixated on daily news accounts of Jesica Santillan’s deteriorating health. Rommelmann had a thirteen-year-old daughter who looked strikingly like seventeen-year-old Jesica, and the resemblance had been enough to fuel a paralyzing obsession. ...

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Fame and Fortune: The ‘‘Simple’’ Ethics of Organ Transplantation

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pp. 349-360

As the essays in this volume show, the story of Jesica Santillan’s bungled transplant raises many questions about medical technology, bioethics, and American society. These questions appear in Jesica’s story as both new and yet familiar. ...

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Acknowledgments

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pp. 361-362

In mid-2004, Peter Guarnaccia, Julie Livingston, and I brought together this extraordinary group of authors (from transplant surgery and medicine, anthropology, medical sociology, history, medical ethics, philosophy, health law, and health policy) for a series of conversations about the infamous ‘‘bungled transplant’’ and its implications for health care and society. ...

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Contributors

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pp. 363-368

Charles L. Bosk is professor of sociology and graduate group chair of sociology at the University of Pennsylvania. He is author of Forgive and Remember: Managing Medical Failure (1979); All God’s Mistakes: Genetic Counseling in a Pediatric Hospital (1992), and the forthcoming What Would You Do? The Collision of Ethics and Ethnography (2006). ...

Index

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pp. 369-378


E-ISBN-13: 9781469605432
E-ISBN-10: 1469605430
Print-ISBN-13: 9780807830598
Print-ISBN-10: 0807830593

Page Count: 392
Illustrations: 7 illus.
Publication Year: 2006

Series Title: Studies in Social Medicine