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

Wailoo, Keith; Livingston, Julie; Guarnaccia, Peter

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 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 University Jacklyn 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 UniversityThis 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 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 University Jacklyn 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

A Death Retold

Cover

Title Page, Copyright

Contents

Introduction: Chronicles of an Accidental Death

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

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

The Transplant Surgeon’s Perspective on the Bungled Transplant

From Libby Zion to Jesica Santillan: Many Truths

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

Part II. Justice and Second Chances Across the Border

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

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

Justice in Organ Allocation

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

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

Part III. Citizens and Foreigners/Eligibility and Exclusion

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

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

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

Part IV. Speaking for Jesica

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

Jesica Speaks?: Adolescent Consent for Transplantation and Ethical Uncertainty

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

Acknowledgments

Contributors

Index

Research Areas

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