A Death Retold

A Death Retold: Jesica Santillan, the Bungled Transplant, and Paradoxes of Medical Citizenship

KEITH WAILOO
JULIE LIVINGSTON
PETER GUARNACCIA
Copyright Date: 2006
Pages: 392
https://www.jstor.org/stable/10.5149/9780807877524_wailoo
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  • Book Info
    A Death Retold
    Book Description:

    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 PennsylvaniaLeo R. Chavez, University of California, IrvineRichard Cook, University of ChicagoThomas Diflo, New York University Medical CenterJason Eberl, Indiana University-Purdue University IndianapolisJed Adam Gross, Yale UniversityJacklyn Habib, American Association of Retired PersonsTyler R. Harrison, Purdue UniversityBeatrix Hoffman, Northern Illinois UniversityNancy M. P. King, University of North Carolina at Chapel HillBarron Lerner, Columbia University Mailman School of Public HealthSusan E. Lederer, Yale UniversityJulie Livingston, Rutgers UniversityEric M. Meslin, Indiana University School of Medicine and Indiana University-Purdue University IndianapolisSusan E. Morgan, Purdue UniversityNancy Scheper-Hughes, University of California, BerkeleyRosamond Rhodes, Mount Sinai School of Medicine and The Graduate Center, City University of New YorkCarolyn Rouse, Princeton UniversityKaren Salmon, New England School of LawLesley Sharp, Barnard and Columbia University Mailman School of Public HealthLisa Volk Chewning, Rutgers UniversityKeith Wailoo, Rutgers University

    eISBN: 978-1-4696-0543-2
    Subjects: Health Sciences

Table of Contents

  1. Front Matter
    (pp. i-iv)
  2. Table of Contents
    (pp. v-viii)
  3. INTRODUCTION: CHRONICLES OF AN ACCIDENTAL DEATH
    (pp. 1-16)
    KEITH WAILOO, JULIE LIVINGSTON and PETER GUARNACCIA

    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. As the hospital spokesman explained publicly, Jesica’s surgical team had made a simple but tragic mistake in the hours leading up to her heart and lung transplant operation. Soon after replacing Jesica’s failing heart and lungs with healthy ones, the team discovered that the transplanted heart and lungs had come from a patient of a different blood type. The donor organs...

  4. PART I. MEDICAL ERROR AND THE AMERICAN TRANSPLANT THEATER
    • AMERICA’S ANGEL OR THIEVING IMMIGRANT?: MEDIA COVERAGE, THE SANTILLAN STORY, AND PUBLICIZED AMBIVALENCE TOWARD DONATION AND TRANSPLANTATION
      (pp. 19-45)
      SUSAN E. MORGAN, TYLER R. HARRISON, LISA VOLK CHEWNING and JACKLYN G. HABIB

      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. Historically, print journalism and television coverage has often utilized almost Frankenstein-like images of “harvesting” organs to rebuild a defective human body while, at the same time, portraying organ transplants as miracles of modern science and the sole hope for life for the many thousands of people on the waiting list. Jesica Santillan’s...

    • HOBSON’S CHOICES: MATCHING AND MISMATCHING IN TRANSPLANTATION WORK PROCESSES
      (pp. 46-69)
      RICHARD I. COOK

      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, tort reform, and the intrinsic fallibility of human performance. Like other celebrated cases, the “Duke event” was attributed to “human error” by a practitioner working at the “sharp end” of the system, in this case the pediatric cardiac surgeon. This attribution stands mainly because...

    • THE TRANSPLANT SURGEON’S PERSPECTIVE ON THE BUNGLED TRANSPLANT
      (pp. 70-81)
      THOMAS DIFLO

      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, and a donor had been identified in New England for one of the patients on the Duke heart-lung transplant list. Heart-lung transplants are rare—only 39 were done in the United States in 2004, as compared to 6,200 liver transplants and 16,000 kidney transplants.² This is partly due to the relative paucity of...

    • FROM LIBBY ZION TO JESICA SANTILLAN: MANY TRUTHS
      (pp. 82-96)
      BARRON H. LERNER

      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, which was an inadequate strategy for preventing organ mismatches. What needs correcting, according to this paradigm, is the system. “The most important problem identified through this whole sad story [of Jesica Santillan],” stated Thomas Murray, president of the Hastings Center, “is the failure to build a...

    • ALL THINGS TWICE, FIRST TRAGEDY THEN FARCE: LESSONS FROM A TRANSPLANT ERROR
      (pp. 97-116)
      CHARLES L. BOSK

      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, those cases that most cry out for a guilty verdict and punishment by the death penalty as part of a collective stampede for retributive justice, are precisely those cases where errors occur most frequently. Fueled by public outrage and extensive media...

  5. PART II. JUSTICE AND SECOND CHANCES ACROSS THE BORDER
    • THE POLITICS OF SECOND CHANCES: WASTE, FUTILITY, AND THE DEBATE OVER JESICA’S SECOND TRANSPLANT
      (pp. 119-141)
      KEITH WAILOO and JULIE LIVINGSTON

      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, marked a compelling turning point in the public discussion of the Santillan saga. As in so many transplant stories, her first operation had created enormous hope. How lucky she was to rise to the top of the list, suddenly to receive this long-awaited...

    • TUCKER’S HEART: RACIAL POLITICS AND HEART TRANSPLANTATION IN AMERICA
      (pp. 142-157)
      SUSAN E. LEDERER

      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. By the time Jesica Santillan underwent her consecutive heart-lung transplants in 2003, American transplant programs remained a destination for individuals and their families seeking such hightech interventions.

      As in Jesica Santillan’s story, the early American experience with heart transplantation was haunted by the...

    • JUSTICE IN ORGAN ALLOCATION
      (pp. 158-179)
      ROSAMOND RHODES

      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. Nevertheless, I was somewhat surprised when the Santillan case was mentioned twice on a recent morning, first in a teaching session with residents from orthopedics and second during surgery teaching rounds. A resident in orthopedics mentioned Santillan in the context of comparing the Duke...

    • PLAYING WITH MATCHES WITHOUT GETTING BURNED: PUBLIC CONFIDENCE IN ORGAN ALLOCATION
      (pp. 180-204)
      JED ADAM GROSS

      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. These flashpoints included determining when transplant surgery was medically and morally justifiable, foreign patients’ access to donated organs, and disparities in medical care along lines of race and wealth. In the aftermath of Santillan’s death, the United Network for Organ Sharing (UNOS), the nonprofit organization that oversees...

    • CONSUMING DIFFERENCES: POST-HUMAN ETHICS, GLOBAL (IN)JUSTICE, AND THE TRANSPLANT TRADE IN ORGANS
      (pp. 205-234)
      NANCY SCHEPER-HUGHES

      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, and invoking their “right” to transplant were traveling great distances to procure organ transplants illegally in second and third world contexts. Indeed, the deeply entrenched notions of “organs scarcity” and “waste” that so clearly circumscribed the Santillan story were crucial factors shaping these new global...

  6. PART III. CITIZENS AND FOREIGNERS/ELIGIBILITY AND EXCLUSION
    • SYMPATHY AND EXCLUSION: ACCESS TO HEALTH CARE FOR UNDOCUMENTED IMMIGRANTS IN THE UNITED STATES
      (pp. 237-254)
      BEATRIX HOFFMAN

      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. First of all, the Santillan family came to the United States to seek medical care for Jesica; most undocumented immigrants avoid the health care system as much as possible, and very few migrate solely for medical reasons. Second,...

    • ELIGIBILITY FOR ORGAN TRANSPLANTATION TO FOREIGN NATIONALS: THE RELATIONSHIP BETWEEN CITIZENSHIP, JUSTICE, AND PHILANTHROPY AS POLICY CRITERIA
      (pp. 255-275)
      ERIC M. MESLIN, KAREN R. SALMON and JASON T. EBERL

      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. In the wake of September 11, with public and governmental scrutiny about one’s country of origin having intensified, these questions about citizenship, justice, and the role of the state take on new meaning.

      This essay examines the salient issues from the perspectives of moral and political philosophy,...

    • IMAGINING THE NATION, IMAGINING DONOR RECIPIENTS: JESICA SANTILLAN AND THE PUBLIC DISCOURSE OF BELONGING
      (pp. 276-296)
      LEO R. CHAVEZ

      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 Tragically, the transplanted organs were of a different blood type from Jesica’s.² Doctors quickly found new organs and transplanted those into Jesica’s body, but it was too late. Jesica’s brain had experienced too much damage. Jesica died on February 22, 2003.³

      By the time of her death, and most...

  7. PART IV. SPEAKING FOR JESICA
    • BABES AND BABOONS: JESICA SANTILLAN AND EXPERIMENTAL PEDIATRIC TRANSPLANT RESEARCH IN AMERICA
      (pp. 299-328)
      LESLEY A. SHARP

      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. In anticipation of organ replacement, anesthetized patients must enter the operating theater, where their natal hearts and lungs, for instance, are removed, their vital functions temporarily bridged by complex apparati until their surgeons can implant newly acquired parts. When transplantation is viewed in this manner, it does in fact...

    • JESICA SPEAKS?: ADOLESCENT CONSENT FOR TRANSPLANTATION AND ETHICAL UNCERTAINTY
      (pp. 329-348)
      CAROLYN ROUSE

      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-yearold Jesica, and the resemblance had been enough to fuel a paralyzing obsession. After Jesica died, Rommelmann was able to contact the Santillan’s benefactor, Mack Mahoney, and Mahoney decided that Rommelmann should be the one to write Jesica’s story. Rommelmann flew to North Carolina, was warmly greeted by Nita and Mack Mahoney, and for the next week embarked on a journey that ended with her abruptly fleeing from Mahoney’s paternalism. To Rommelmann’s horror, Mahoney...

    • FAME AND FORTUNE: THE “SIMPLE” ETHICS OF ORGAN TRANSPLANTATION
      (pp. 349-360)
      NANCY M. P. KING

      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.

      What interests me most is their familiarity. These questions return again and again, in stories about medical advances and family tragedy, because they haven’t really been answered. And the questions are familiar for another reason, too: they go hand in hand with the stories of individuals like Jesica, whom we come to know through the peculiar variety of fame exemplified in her story and...

  8. ACKNOWLEDGMENTS
    (pp. 361-362)
    Keith Wailoo
  9. CONTRIBUTORS
    (pp. 363-368)
  10. INDEX
    (pp. 369-378)
  11. Back Matter
    (pp. 379-379)