Transplanting Care: Shifting Commitments in Health and Care in the United States 9780813574455

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Transplanting Care

Critical Issues in Health and Medicine Edited by Rima D. Apple, University of Wisconsin–Madison, and Janet Golden, Rutgers University, Camden Growing criticism of the U.S. health care system is coming from consumers, politicians, the media, activists, and healthcare professionals. Critical Issues in Health and Medicine is a collection of books that explores these contemporary dilemmas from a variety of perspectives, among them political, legal, historical, sociological, and comparative, and with attention to crucial dimensions such as race, gender, ethnicity, sexuality, and culture.

For a list of titles in the series, see the last page of the book.

Transplanting Care Shifting Commitments in Health and Care in the United States Laura L. Heinemann

Rutgers University Press New Brunswick, New Jersey, and London

Library of Congress Cataloging-in-Publication Data Names: Heinemann, Laura L. Title: Transplanting care : shifting commitments in health and care in the United States / Laura L. Heinemann. Description: New Brunswick, New Jersey : Rutgers University Press, [2016] | Series: Critical issues in health and medicine | Includes bibliographical references and index. Identifiers: LCCN 2015037354| ISBN 9780813574431 (hardcover : alk. paper) | ISBN 9780813574424 (pbk. : alk. paper) | ISBN 9780813574448 (e-book (epub)) | ISBN 9780813574455 (e-book (web pdf)) Subjects: LCSH: Transplantation of organs, tissues, etc.—United States. | Transplantation of organs, tissues, etc.—United States—Psychological aspects. | Medical care—United States. | Medical rehabilitation—United States. Classification: LCC QP89 .H45 2016 | DDC 617.9/54—dc23 LC record available at http://lccn.loc.gov/2015037354 A British Cataloging-in-Publication record for this book is available from the British Library. Copyright © 2016 by Laura L. Heinemann All rights reserved No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, or by any information storage and retrieval system, without written permission from the publisher. Please contact Rutgers University Press, 106 Somerset Street, New Brunswick, NJ 08901. The only exception to this prohibition is “fair use” as defined by U.S. copyright law. Visit our website: http://rutgerspress.rutgers.edu Manufactured in the United States of America

For Chris, Oscar, and Graham

Contents

Preface ix Acknowledgments xi

Prologue 1

Introduction 8

Chapter 1

Early Navigations

21

Chapter 2

Troubled Relations and Former Lives

39

Chapter 3

Precarity and Policy

56

Chapter 4

When Patients Are Also Caregivers

77

Chapter 5

Conscripting Caregivers’ Health (Or, When Caregivers Are Patients, Too)

91

Transformations in Home Life and High-Tech Health Care

110

Chapter 7

Revealing and Reframing Kinship and Care

129



Conclusion 146

Chapter 6

Notes 155 References 165 Index 179

vii

Preface

Although I collected the data I use in this volume during a total of twenty-four nonconsecutive months of qualitative ethnographic fieldwork from 2007 to 2010, the inspiration for this endeavor took root during my master’s level social work training, which I completed as an early requirement of my graduate studies in social work and anthropology. Over the course of my yearlong internship in hospital social work on an adult inpatient physical medicine and rehab unit, I came to know the occasional transplant patient who needed intensive physical rehabilitation prior to being discharged from the hospital. Typically, these patients had experienced multiple complications and long post-transplant hospital stays. Here I first began to pay closer attention to the interactions of patients and their informal caregivers, and I wondered what their lives and relationships would be like once they left the hospital. During this time, I also “shadowed” in a liver transplant clinic. There, under the guidance of a dedicated liver transplant social worker, I had the opportunity to gain foundational insights about the myriad and complex challenges faced by transplant patients and loved ones trying to meet often competing demands. The transplant social workers on this team regularly received calls from spouses who could no longer stay at home to care for their sick loved one lest they lose their job; from impoverished families whose cars had broken down and, with no funds for repairs, were therefore unable to travel to and from their frequent clinic appointments; and from recipients who had lost insurance for one of several possible reasons and now had to choose between paying rent and buying the immunosuppressants and other medications necessary to keep their transplanted organ healthy and to prevent their immune system from attacking it. These challenges certainly were not isolated to the site of my earliest encounters with transplantation. They relate to a wider retraction of social welfare resources and a simultaneous expansion of biomedicine into everyday life. Specifically, a history of piecemeal approaches to US health policy, along with bottom-line driven cost cutting, coupled with developments in medical technologies and practices, together have shifted much of the transplant process and its accompanying responsibilities out of the hospital and into private home spaces under the care of loved ones. In my subsequent fieldwork, I focused more systematically on those caring relationships on which transplantation leans, against the political economic backdrop that so thoroughly shapes the conditions of daily living. Ultimately, these insights came to comprise the basis for this book. ix

Acknowledgments

I am deeply grateful to the patients, caregivers, and professionals who have so generously shared their insights with me; this book marks an earnest attempt to convey the richness, complexity, and significance of their lived experiences with, through, prior to, and beyond transplantation. I also write this in memory of those I met during fieldwork whose journey through life has ended. Thank you to my mentors at my MSW field placement at UMHS, particularly Diane Kobe and Daniel Reid, and fellow intern Stacy Hsu, who were instrumental in introducing me to the world of caregiving, transplant, and post-hospital daily life. Special sincere thanks go to the local sponsors at my research field site, who must remain anonymous for confidentiality; without their help, this work would never have been possible. I am also tremendously grateful to Gillian Feeley-Harnik, Marcia Inhorn, Letha Chadiha, Holly Peters-Golden, and Beth Glover Reed, for their scrupulous feedback and thoughtful, expert, collaborative guidance at every stage of my dissertation preparation, research, and writing, which formed the basis for this book. Their influence on my learning, work, and life is truly far-reaching and enduring. Thank you to Deborah Schild and Karen Staller, who also played major roles in my formation as a qualitative researcher, and to Cecilia Tomori for her camaraderie, motivating support, and candid remarks on the earliest drafts of this work in its dissertation stage. My research was funded by the National Science Foundation (BCS— Cultural Anthropology) Doctoral Dissertation Improvement Grant (Award ID: 0649678). Because I draw upon data made publicly available by the US Organ Procurement and Transplantation Network, this work was also supported in part by Health Resources and Services Administration contract 234–2005– 37011C. (The content, of course, is my responsibility alone and does not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products, or organizations imply endorsement by the US government.) I also received funding from several University of Michigan sources: the Center for the Education of Women and Cecilia Anne Stiborik Dreyfuss Scholarship; the Rackham Graduate School Regents’ Fellowship, Susan Lipschutz Award, Graduate Student Research Grant, Anthropology Block Grant, and One-Term Dissertation Fellowship; and the School of Social Work Alumni Award, Doctoral Dissertation/Thesis Grant, Henry J. Meyer Scholarship Award, and Social Work-Social Science

xi

xii Acknowledgments

Summer Funding. Creighton University’s Department of Sociology, Anthropology, and Social Work (now the Department of Cultural and Social Studies) Visiting Scholar Program also supported early analysis and writing. I offer sincere thanks to all. I have presented various iterations of portions of this book at meetings of the American Anthropological Association, the Society for Medical Anthropology, and the Society for Applied Anthropology. I particularly thank discussants Sharon Kaufman, who generously helped to push and further develop my thinking on what has become chapter 4 of this book (“When Patients Are Also Caregivers”), and Jessaca Leinaweaver, who offered thoughtful feedback and insightful remarks on what has become chapter 6 (“Transformations in Home Life and High-Tech Health Care”). Versions of these chapters appeared as journal articles in Medical Anthropology Quarterly (under the title, “For the Sake of Others: Reciprocal Webs of Obligation and the Pursuit of Transplantation as a Caring Act”) and Medicine Anthropology Theory (under the title, “Accommodating Care: Transplant Caregiving and the Melding of Healthcare with Homelife in the United States”); my thanks to the anonymous reviewers for their formative comments, and to these journals for their permission to use the articles as the basis for chapters 4 and 6, respectively. Thanks also to Frances Barg, Nicole Berry, Sherylyn Briller, Paul Brodwin, Mara Buchbinder, Jennifer Collier, Chiara Garattini, Fayana Richards, Lesley Sharp, Elisa Sobo, Margaret Souza, Amy Speier, and Maria-Keiko Yasuoka for collegial, inspiring conversations during and between conference sessions at various points along the way. I offer special thanks to my wonderful Creighton University colleagues, especially Alexander Rödlach, Barbara Dilly, Angela Batson, Roger Bergman, Raymond Bucko, Helen Stanton Chapple, Kristin Fitzgerald, Barb Harris, LaShaune Johnson, Rebecca Murray, and Dianne Travers Gustafson, all of whom offered particularly crucial advice and support at critical times throughout my book-writing endeavors; and to these and the rest of my colleagues in the Department of Cultural and Social Studies and elsewhere at Creighton for sustaining a heartening and collegial environment in which to carve out time to think and write. My students deserve special thanks, too, for their patience during those times when I had to prioritize my own work; I am deeply appreciative to Angela Eastlund, Laura Nasseri, and Danica Rush, who provided much-needed assistance that kept me afloat during especially busy intervals. I am immensely grateful to Elana Buch, Jessica Robbins-Ruszkowski, Kristin Yarris, Aaron Seaman, and Julia Kowalski for their brilliant, challenging, perceptive, astute feedback on my later writing and thinking. Their gracious and good-humored encouragement has truly kept me going. I thank Rutgers

Acknowledgments xiii

University Press, particularly Peter Mickulas for his clear guidance and steady confidence in this book; his colleagues Janet Golden and Rima Apple from the Critical Issues in Health and Medicine book series; and Marilyn Campbell and the rest of the team for so capably supporting its editing and publication. The final manuscript was improved tremendously by helpful critiques from Julie Fairman and another anonymous reviewer and with expert editing by Lisa Jerry. While I have listened closely to the information and suggestions provided by others, all errors or shortcomings are solely my own. And finally, my heartfelt thanks to my own extraordinarily supportive loved ones: my parents, Lynelle and Leonard Heinemann, for their unconditional, unwavering love and care; my siblings Brad Heinemann and Rebecca Unwin; extended family, particularly Kathryn Hall, Marshann Snyder, and the Webers—Dorothy, Norm, Corey, Andi, Reid, Katie; and dear friends (in addition to those I have already named) Susanne Unger, Aparna Ramakrishnan, Tam Perry, Ellen Block, Melissa Francis, Jason Duvall, Ann Beck Miller, Melissa Messina, Mick Messina, Denise Bash, Jason Bash, Clint Meyer, Hillary Meyer, Christine Laue, Brigid Howard, the rest of the Omaha crew, and everyone else who commiserated, fostered hope, let me cry it out, traveled cross-country to visit, provided emergency back-up childcare, stayed in touch even when I’ve been hard to reach, and in myriad other ways continued to comprise my web of care during graduate school and the “ramp up” since that time. Above all, my love and gratitude to Chris Weber, for all the times he has asked me to look up from my work and go for a walk, for cheering me on through the many ups and downs of our years together, and for hanging in there throughout this crazy ride; and our two beautiful, amazing young sons, Oscar and Graham, for truly inspiring and motivating me, for reminding me to attend to what matters most, and for keeping me grounded and relishing the everyday.

Transplanting Care

Prologue

In less than twenty-four hours, Mary’s entire world had been upended. Still in her early forties, she lost the use of two vital organs nearly overnight and of a third soon after that. Mary had been a strong, vibrant woman who loved to play softball and volleyball in her free time, which admittedly had been scarce in recent years, given that she was an integral member of a wide network of kin, friends, coworkers, and teammates. Her responsibilities were myriad: she was the mother of two teenage daughters (one in junior high and the other in high school), wife to Rob (with failing vision and back problems limiting his ability to work), and the full-time inventory manager at a local grocery store. Aside from living briefly in a Rocky Mountain state, where she met Rob after divorcing her first husband, Mary had been born and raised in the same midsized midwestern city where they now lived. A year and a half before I first spoke with them, she had said goodbye to Rob and then was wheeled into surgery to remove two large cysts that had been causing some substantial abdominal pain. Mary had been expected to resume life as usual following surgery and a moderate recovery period, but her path instead veered dramatically. Sitting together during our first interview, Mary turned toward Rob as if to pass the baton of their story: “They put me asleep, and he’ll have to tell you the rest because I was in a coma for six weeks.” Rob shifted slightly in his brown recliner chair, separated from Mary’s chair by an end table that held papers, a cordless telephone, and a four-row-byseven-column plastic pillbox—an ever-present fixture for nearly every transplant patient I met during fieldwork. Sitting among these items were also two insulated beverage holders, one of which was a large plastic jug with a straw and handle, enabling Mary to use it independently. Her hands, once key to her talents in sports, had become contracted into a clenched position—a complication that had developed during one of her many hospitalizations over the past several months. In fact, as we talked, I could readily observe that the new realities of family life in the wake of grave illness and transplant recovery were evident throughout this now-blended home-hospital space. A cane, presently inadequate to meet Mary’s ambulatory needs, sat propped up against the sofa on the far side of the room. More telling, within reach of Mary’s recliner was her walker. Along with her hands, her feet, too, had clenched into a “dropped” position, and she had been having even more trouble walking since her most recent hospitalization.

1

2

Transplanting Care

As he rocked back in his chair, Rob rested his foot on the NASCAR-themed mat in front of him and, in his slow deep voice that gave away his southern upbringing, described how he waited and waited for someone to come and explain to him why his wife still was not out of surgery. The full details did not come until much later, but it became clear that a series of medical errors during surgery had severely jeopardized Mary’s life. Although Mary hung on, her condition had become so serious that it necessitated a transfer to a different hospital where staff and equipment were better suited to treat her. This second hospital happened to be part of the health system serving as the clinical hub of my fieldwork. The initial surgical errors had caused irreversible damage to Mary’s pancreas and small intestine. While doctors at first believed they would be able to salvage enough of her small intestine to “reconnect” her gastrointestinal tract, these hopes soon diminished. Unable to digest food normally, Mary now depended for sustenance upon “TPN,” or total parenteral nutrition.1 With concomitant complications over time, her liver had ceased to function as well. Just short of nine months after an otherwise healthy Mary had said goodbye to Rob and was wheeled back for surgical removal of her cysts, she was evaluated for and placed on a transplant list for not one organ, but three organs. About four months later, they got “the call.” Mary: And we’re just getting ready to head to bed. It was ten o’clock. Rob was just doing my dressing change—he had just finished it. (Rob: I was in the middle of it.) Or you were in the middle of it, that’s right. Rob: And I had taken the gloves off because (Mary: The phone rang.) And after I knew who it was, then I gave her the phone and I took my gloves off and I grabbed an Ativan, because I knew she was going to wig out. Mary: But [our nurse coordinator] called and she said, “We have your organs.2 We have a match, and you need to get over here to the hospital. How fast can you be here?” She said, “Just take your time, but get over here as fast as safety will allow.” Rob was doing my stomach, and I was making my phone calls. I called and woke up my Mom and told my Mom about it. (Rob: And she got sick.) She got so excited that she got sick. [ . . . ] And I called everybody on our phone . . . I had thirty numbers on our phone list in the phone. I just kept calling everybody. I woke up the neighbors across the street and told them everything.

Prologue 3

FOR THAT FIRST INTERVIEW Mary, Rob, and I sat together in the living room of

their small house. Pictures of their blended family filled frames that lined the walls and were propped up among a figurine collection populating the shelves surrounding their television. Rob, too, had been married before, and while he and Mary had not had children together, Rob was a thoroughly dedicated stepfather to her two daughters. Rob also had a daughter from his previous marriage. She had died five years earlier, from complications of an illness that eventually had led to kidney failure. I later also learned that Rob’s first wife had died of cancer and that he had tended to both his wife and daughter during their illnesses and in their last days. These particularly cruel twists in his life narrative also afforded him a very intimate perspective on caregiving and loss and powerfully shaped his orientation toward caring for Mary. As he explained, however, there was a difference: he knew that death would be imminent for his first wife and daughter and that he really could not “screw up” anything. By contrast, he feared that Mary’s well-being and potential for recovery were much more in his hands. The stakes were even higher in transplantation because the aim was to eventually restore life and health. Rob feared that, as a caregiver, he could diminish those chances if he failed in his duties. The magnitude of Rob’s responsibilities, the extent to which the family was working to reconcile the clinical demands of Mary’s health status with daily life at home, and the entwining of these dimensions into the couple’s marital relationship came into focus in this first interview. At one point, our conversation continued virtually uninterrupted when a loud beeping sound suddenly emanated from the “wound-vac” machine that was removing drainage from one of Mary’s particularly stubborn wounds. Almost without comment, Rob rose from his chair and proceeded to change the battery pack and reset the device. Just minutes later, one daughter called to ask if she could go to a friend’s house after school. I often marveled aloud at how people like Mary and Rob managed to handle complicated medical regimens and to ensure that children do their homework and get to school on time, the lawn gets mowed, the laundry gets done, and meals get provided. To this end, they unwaveringly echoed the mantra I heard from many transplant patients and caregivers, “You just do what you gotta do.” It became shorthand for the reconciling of disparate realities through practical action, even as the changes in home life created new terms upon which transplant candidates, recipients, and loved ones negotiated their daily lives and relationships. Later in the interview, Mary’s eyes filled with tears as Rob explained how medical challenges had affected their lives as a couple and as a family. Together, they spoke directly to these complexities:

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Transplanting Care

Rob: It’s turned the whole family upside down. It’s changed our relationship. [ . . . ] Put it that way, I won’t say that it’s better or worse, but it’s definitely changed our relationship. (Mary: There’s no intimacy. There can’t be.) I asked her a long time ago, well before she ever had her transplant, I said, are we ever gonna get past a nurse-patient relationship again and be a husband and wife? You know, we don’t know, and it could be a long, long time before we will. And that’s something that, in a long-time situation like this is, um, I don’t think we were aware of it. I wasn’t warned about it. (Mary: I don’t think people necessarily see that coming.) And I don’t think about it a lot now [but] it does cross my mind, and when it does, it’s like, Wow, how will things be in the future? I mean, there are signs that I know of, like today I, this [ileostomy] bag is kicking my ass and I don’t know, I’ve tried everything I can, and I blew up. I’m sure she’s mad at me about it (Mary: I’m not) and I’m sorry but I just, and then I [have to convince] her to take her medicine and [I] do her [ileostomy] bag3 changes and that makes her hurt [because I have to pull the tape from her skin to change the bag]. [ . . . ] And I don’t know how this is just gonna work out. [ . . . ] I would trade places with her in a heartbeat if it would get her there. But if she does get back to one hundred percent normal, she won’t need me, and that’s a fear, regardless. Even if it is stressful, and no matter how stressful it is, it’s still good to be needed. [ . . . ] As far as our marital relationship, I don’t think [it has changed,] in my eyes. Me personally, it hasn’t really, other than the sex portion of it. Um, and all the playfulness that goes around that, the flirting that goes around that, that’s all pretty much gone now. Other than that, I don’t think it’s been a change in our relationship, the way, it hasn’t affected the way I feel about her, I still feel the same about her now as I did before. If that makes any sense . . . As patients and caregivers navigate the complex entwinements of transplantation and home life, relations can be infused with tension and contradictions. Rob wished for Mary’s full recovery and yet simultaneously expressed fear over the prospect of no longer being needed. He willingly took on the challenge of managing Mary’s ileostomy bag and the bodily waste it collects, but he also lamented the loss of sexual intimacy. This made even more significant the fact that the couple’s bedroom now served as a storage space for the myriad boxes of medical supplies Mary required for her daily care. Rob reported that their experiences with transplantation have “turned the whole family upside down,” and at the same time he insisted that their relationship had not been changed.

Prologue 5

In fact, this particular claim—that transplantation has not changed the relationship—was reiterated again and again by people I spoke with during fieldwork. This assessment marks a dedication to stability in the intimate relationships that matter most and often are most heavily tapped, even as circumstances indeed turn the whole family upside down. The claim stakes itself in normalcy, regardless of the harsh realities and sometimes extraordinary situations transplant patients and their informal caregivers encounter together, and flies in the face of competing truths, when much of transplantation entails preparing for, waiting for, and recovering from the procedure at home, where everyday life must also continue in some fashion. The stress of finances had also compounded. It took little time for Mary’s medical bills to spiral well beyond what they could ever hope to pay. She had already been contacted by her insurance company with notification that she had exceeded her annual dollar limit for coverage; soon, she also would exceed her total lifetime limit. Mary was in the process of applying for Medicaid, but her eligibility would not begin for several months. She was told that she could apply for additional benefits through Blue Cross and Blue Shield, but she and Rob could not afford the higher premiums. She explained, “Just like a car accident, if you get into too many car accidents, you pay really big for auto insurance. You’re high-risk then. Well, I’m considered high-risk because of my transplant. I had almost two hundred dollars a month and the deductible is five thousand dollars, so, yeah, what do you do?” Notably, the couple’s financial status had become precarious even before Mary’s transplant. Health problems of his own already had compromised Rob’s ability to work in full-time paid employment. Years ago, he had completed training in what he described as electronics work, which he enjoyed doing for about twelve years. But, as he put it, “I have severe glaucoma; my vision is decreasing. As my vision decreases, as the way I see it, the importance of my jobs that I’ve had have also decreased.” His declining health eventually made it necessary to give up working in electronics and cut down first to lighter-duty maintenance work at a local food-processing plant and finally to one shift a week as a cashier at the same store in which Mary had been working prior to her medical crises. It was evident as Rob described his changes in employment that he would rather be working in electronics than as a supermarket cashier, but Rob’s curtailed employment status also left him more available to be at Mary’s side through all of her struggles. Together, the couple made their way via the daily working out of what must be done, as persons beholden to one another, in a context where larger constraints bend life narratives. Mary’s was the only instance I learned of

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during fieldwork in which a medical error had led to a need for a transplant. Much more common are longer-term dealings with illness, as I will illustrate in the pages to follow. While relatively unique circumstances brought Mary and Rob to transplantation, I begin with their story because other aspects of their movement to and through transplantation resonated closely with the experiences of others. Thus, this volume grows out of the premise that, although the surgical procedures in organ transfer may be specifically situated in hospital settings, these contexts neither delimit the boundaries of sociocultural life, nor do they fully encompass life throughout transplantation. In fact, relatively little of the transplant process—more broadly defined—actually takes place in the clinic under the immediate care of clinicians. Rather, more of transplantation happens at home and among kin who are bound together by moral commitments to care for one another. These obligations, of course, are context-specific and, as I occasionally found, are not always upheld in practice. In many respects, these very breakdowns reveal just how much transplantation depends on the availability of care, which rivals transplanation’s dependence on the availability of organs. A frame that extends beyond biomedicine likewise shows how patients and loved ones so often do manage to integrate the intensely clinical with the thoroughly quotidian, making good on their moral obligations to one another, despite some of the most formidable constraints. This book follows patients and loved ones along their “journeys” to, through, and beyond transplantation,4 including especially those stretches that are rooted in daily home and family life. Transplantation carries with it no guarantees; the period leading up to it can be lengthy and riddled with twists and turns. And while the aim for patients and loved ones might be to return to “normal life” as soon as possible after surgery, post-transplant living tends to become a “new normal” under the best of circumstances and can be anything but normal for those who encounter unexpected medical, financial, or personal complications.5 Across the spectrum of experiences, transplantation entails movement along what often turns out to be a meandering (and sometimes looping) series of pathways. I find anthropologist Tim Ingold’s concept of “wayfaring,” or “life lived along lines” (2011, xii) through a meshwork of interrelatedness, to fit soundly with my observations. Those who must move in and around, back and forth between hospital and home throughout the transplant process, might well be described as “moral wayfarers”6 on often unstable terrain, for reasons that I seek to clarify throughout this volume. With the stakes no less than the prospects of life and death, patients and caregivers must learn as they go—acquiring, integrating, and carrying on knowledge and practices

Prologue 7

along paths of movement, or wayfaring (Ingold 2011, 143), working through logistical and moral challenges alike. Beyond the transfer of organs, then, this book is about the back-and-forth movement of care throughout transplantation—among persons, across purposes, and between hospitals and home life. Akin to physicians’ efforts to maintain the integrity of precious kidneys, livers, and hearts as they are carried from one body to another, so do patients and loved ones strive to keep intact their relations of kinship, care, and home life throughout the endeavor. Yet, just as grafted organs are subject to transformation through medications, immunological rejection, and changes in bodily context, so too can relations become transformed along the way.

Introduction

Popular assumptions about transplantation in the United States often hold that the path through and past the procedure, as long as the patient can be fortunate enough to be matched with an available organ or willing donor, should be relatively straightforward. Transplant advertisements and donation campaigns commonly feature images of recipients of various ages fully recovered, smiling, playing sports, hugging partners, or pushing a child on a swing. Although life goes on, the way often is not so straightforward. The tug of the ideal “normal” remains palpable for patients and loved ones like Mary and Rob, whom I introduced in the prologue, yet the perpetual ups and downs of family life are undeniably entwined around their experiences with illness, transplant, and recovery. Important elements of the couple’s story are unique, but the perspectives they shared exemplify several facets of transplantation that patients and caregivers held in common, particularly regarding the importance of contexts beyond the organ transfer itself. Rather than looking solely to those parts of the process that are most obviously within the domain of “transplant medicine,” this book leans on a broadened view that includes the long arc of intersubjective experience extending to life long before and well after transplantation and all the points in between, such as the back and forth between hospitals and homes. Hardly a straightforward progression from Point A to Point B, the transplant journey meanders. Wayfarers—returning to Tim Ingold’s (2011) concept of “wayfaring”— encounter unexpected obstacles, repeating loops, and sometimes competing, even contradictory, rules of the road as they live life along lines of movement, through “meshworks” of interdependence. And if the destination at first seems to be a successful transplant, patients and loved ones sooner or later find that success in the procedure simply marks the beginning of a new segment in a still ongoing voyage. Constraints and Precarity

Movement toward, through, and beyond transplantation is sustained by intimate relations among persons beholden to one another and tied through moral entanglements of care. Beyond organs, care—both its presence and its absence—moves, flows, and sustains; in many regards care is also transplanted along the way, traversing the domains of clinic and home alike. Moving toward

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Introduction 9

and through transplantation in the United States also entails navigating the contours of a wider cultural and political economic landscape. The topography morphs under the tectonics of widely assumed individualism and selfsufficiency, a demonization of state-organized social support and prizing of market-based approaches to social problems, and overall, the neoliberal global capitalism of today—what Jean and John Comaroff (2001) have called “millennial capitalism.” Each of these works together to undergird a form of “precarity,” in the sense described by Judith Butler (2010). “Lives are by definition precarious,” Butler notes, but precarity is a “politically induced condition” in which certain populations are “differentially exposed” to conditions of vulnerability (2010, 25–26). Precarity can carve out paths oriented toward a transplant and sets a difficult course, even well after the procedure.1 In transplantation as elsewhere, illness can work to exacerbate some of the other, already formidable constraints (Inhorn 2003)2 in daily life for patients and their loved ones, and vice-versa. Illness and structured inequalities are deeply interrelated (Farmer 2005; Marmot and Wilkinson 1999), and this interrelationship can effectively amplify risks for the kinds of health problems associated with organ failure, along with the risk of not having access to the kinds of treatments that could address these health problems. Furthermore, a very sick patient can easily lack, or lose, the financial ability to afford the myriad short- and long-term expenses associated with transplantation, many of which are not paid for by insurance. The very same illness that placed a person on a path toward “needing”3 a transplant in the first place may also leave them unable to work. Particularly in the pre–health care reform context in which I conducted the fieldwork that informs this book, losing a job in the United States could mean losing not only income—given the thin unemployment protections typically available—but also medical insurance coverage. Moreover, the kinds of preexisting conditions associated with transplantation could make securing a new insurance policy next to impossible. The state-sponsored medical and disability insurance programs that might have served as a safety net in these instances likewise regularly proved inaccessible or attached to requisites that all but guaranteed continued troubles. Thus, in some cases rather than putting recipients back on equal footing, transplantation could actually maintain or even widen social, economic, and other disparities, even as it might extend patients’ lives. As the provisions of the Patient Protection and Affordable Care Act of 2010 (alternately called the Affordable Care Act and “Obamacare”) go into full effect, some of these double-binds will be ameliorated, but, at the time of my fieldwork, such gaping holes in the US health care system significantly strained

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Transplanting Care

many participants’ everyday lives. Even with recent reforms, however, longestablished trends in private and public funding for health care, coupled with ongoing developments in biomedical technologies and practices, continue to manifest larger shifts toward “responsibilization” (Rose 2007, 4), with patients and loved ones expected to navigate labyrinths of constraints despite the paucity of state-sponsored social welfare resources available to support them in doing so.4 The fact remains that transplant patients’ kin networks can quickly find themselves reeling in the face of multiple competing demands (Levine 2004), even under the very best of circumstances. The ability to manage, in itself, can be consequential because a demonstrated availability of adequate caregiving support is generally considered a prerequisite for transplantation, and, because kin so often fills this role, a loss of family support can effectively jeopardize one’s candidacy for the procedure. In this book, I tack back and forth between micro- and macrolevel views of transplantation by following patients and loved ones as they care for one another, doing what they can to make their way through intimate obligations and a larger political economic terrain that shapes health care and home life alike. Building from this and insisting on the connections between interpersonal relations and their larger contexts, I argue ultimately for better aligning public policy with a collective obligation to care. Specifically, I suggest, the multiple snags and snares encountered by transplant patients and loved ones make a clear case for more comprehensive health and social policy that operates on what feminist care ethicist, social worker, and sociologist Cheryl Brandsen (2006) calls a “public ethic of care,” treating care—broadly conceived—as a necessarily shared responsibility. Situating This Study

In some cases, as with kidney transplantation and dialysis, a person can continue living for months, even years, without use of the affected organ, and a transplant is sought to improve the quality of one’s daily life as much as to stave off death.5 Even with new developments in other areas of medicine, however, most patients in organ failure quite certainly will die sooner rather than later without a timely transplant. Perhaps more than any other aspect of transplantation, ongoing organ shortages have received widespread public recognition and thorough documentation. The home page of the national Organ Procurement and Transplantation Network (OPTN)6 website clearly displays a running tally of these figures: as of 4:21 p.m. on November 12, 2015, for example, there were 122,697 people on transplant waiting lists in the United States. The site also makes clear that, while the waitlists steadily increase

Introduction 11

from one year to the next, the number of transplants performed annually has not increased in like fashion; from January to August 2015, 20,705 transplants were performed.7 In medical anthropology and sociology, a rich body of literature critically examines the social conditions under which tissues and organs—conceptualized as gifts, commodities, or both—move from donors to recipients. Here, a major focus has long concerned the relationship between donors, their kin, and recipients. As many describe, the tethering of recipients’ lives with those of donors’ lives and donor kin comprises a domain of bioconnectedness that is unprecedented, can be unwieldy, and is carefully managed within the confines of the transplant enterprise (e.g., Fox and Swazey 1978 [1974], 1992; Haddow 2005; Jackson 2002; Jacob 2012; Kaufman, Russ and Shim 2006; Lock 2002; Sharp 2001, 2006; Waldby 2002; Yasuoka 2015). Such new bioconnections, forged through reconfigurations even of life (and death) itself (Lock 1996, 1997, 2000, 2002) are thoroughly situated within the pervasive discourse of organ “shortages” and “scarcity.” Medical anthropologist Nancy Scheper-Hughes (2000) forcefully critiques the very idea of scarcity as underpinning a global artifice of “need” for transplantable organs.8 In the context of my own fieldwork, the “shortage” of transplantable organs was manifest in the stringent clinical screening requirements patients must meet in order to be added to waiting lists.9 The shortage became tangible in patients’ and loved ones’ efforts to meet those requirements, and then, if admitted to the waitlist, it took form in their waiting and hoping (Brown et al. 2006). Because I spent my time with candidates, recipients, and their loved ones, theirs are the perspectives I am best positioned to present. One mother of a deceased donor also helped me to approach some small comprehension, however partial, of the tremendous grief of loss, along with the intense feelings involved in meeting and getting to know the recipient of her beloved daughter’s organs. Though this book does not focus on deceased donors and donor kin, and I do not relay her narrative in these pages, the lens I employ is undoubtedly shaped by her perspectives, too. For every story of hope (see Good 2007) in transplantation, there are many more of sorrow, pain, and demise. Rather than taking aim at the procedure (or phenomenon) itself, however, I have sought to understand it within the larger milieu of the US health care system in which it is situated and in light of the long arc of quotidian lived experience among those who seek transplantation via that system.

12

Transplanting Care

Fieldwork in Hospitals and Homes

The clinical hub of my fieldwork, which I refer to under the pseudonym, “the Transplant Center” throughout this book, housed the region’s largest transplant program. (In those instances when I mean to describe the larger health system or medical campus of which the Transplant Center is part, I use the term “Health System.”) Located in what I call “Metrotown,” which is the largest metropolitan area of a state that is sometimes classified as part of the Great Plains and other times as part of the Midwest, the Transplant Center’s service area includes both urban and rural locales. Although the metropolitan area had a population of just less than 850,000 when I was conducting fieldwork, and more than a million people lived within a sixty-minute drive of the city proper, the overall population density of the region is rather low. As is common throughout the midwestern United States, Metrotown stands at a substantial geographic distance from other urban metropolitan areas of comparable or larger size. Surrounding it is a series of small towns and rural farmland. I had several opportunities to experience the transition in landscape while driving from the relatively close quarters (by midwestern standards) of the old residential neighborhoods directly surrounding the Transplant Center toward eventually sprawling suburban developments, shopping centers, and strip malls. From there, small acreages give way to expansive corn and soybean crop fields populated by the pipelines of irrigation systems, sectioned off by barbed wire fences and gravel roads, and interrupted by large cattle feedlots or hog confinements—all signs of the small family farm’s yield to large industrial agriculture and livestock operations.10 Outside the interstate corridor, every twenty to sixty miles, one slows down to the posted speed limits set by local ordinances of small towns attempting to reorient drivers from highway velocities. Patients coming to the Transplant Center from rural areas observed this transition in reverse order and often remarked that navigating Metrotown traffic was its own source of anxiety. The demographics of Metrotown and its surrounding midwestern region,11 as well as the Transplant Center’s patient population, undoubtedly have shaped the data I collected and thus inform the insights I present throughout this book. In total, I met, spent time with, and interviewed one hundred patients, loved ones, and clinical professionals. While I made efforts to achieve as diverse a sample as possible for data collection, the sum of participants in this study reflects the makeup of the patient populations to which I had access throughout fieldwork, and white, middle-class, and heterosexual participants do overall outnumber others.12 I designed neither my

Introduction 13

fieldwork nor this book, however, to focus specifically on transplant disparities by demographic categories.13 Rather, I attempt to elucidate some of the challenges, strengths, and resources that patients and loved ones across multiple social locations encounter throughout the transplant process, and I seek to place them within the larger contexts of their lived experiences in relation to others.14 Throughout these pages, then, I relay grounded perspectives from persons who enjoyed greater relative privilege as well as from persons who have long been subjected—both personally and structurally—to multiple forms of discrimination and oppression. Toward honoring the truly multitextured nature of experience, I include direct quotes and descriptive fieldnotes regarding a wide array of vantage points, foregrounding participants’ own voices (always with pseudonyms)15 or offering close paraphrasing from interview material. In addition to maintaining the classic anthropological attention to the significance of illness narratives (e.g., Good 1994; Kirmayer, Mattingly, and Garro 2000; Kleinman 1988), I took methodological inspiration from Juliet Corbin and Janice Morse (2003), and qualitative methodologists in social work (e.g., Padgett 1998) in approaching participants’ deeply personal stories. In the interest of coherence, space, and the value of ethnographic and narrative depth in a book, I foreground the cases of a relative few study participants, some in greater detail than others, selecting what I considered to be the clearest and most illustrative examples. In doing so, I sacrifice any allusions to presenting quantitatively generalizable findings; instead, I offer grounded, rich insights that represent with validity (Maxwell 2013) the lives of those persons I came to know through fieldwork. Seeking a broad perspective on caregiving throughout transplantation, I purposefully did not limit my sample to any one particular type of transplant. Out of a combination of logistical circumstances and the composition of the Transplant Center’s patient population, I spoke most often with participants in kidney transplant, followed by liver, blood-forming stem cell (or bone marrow), pancreas, and small bowel transplant. In some cases, one or more organs were grafted in the same surgical episode (e.g., a kidney and pancreas). Each type of transplant is different from the next in relevant ways, of course. Kidney transplantation generally is medically more straightforward and has a higher success rate than, say, small bowel transplant, which is a somewhat newer procedure that carries with it a greater propensity for complications. As another example, blood-forming stem cell transplantation differs in important ways from solid organ transfer. It most often is used as a part of certain cancer treatments, and the combined recovery process is generally

14

Transplanting Care

very long. It also need not entail person-to-person movement of bodily matter and can instead involve autologous transplantation. In this procedure, a patient’s own stem cells are “harvested” from the blood or marrow, preserved during a period of intensive chemotherapy or radiation therapy, and then transplanted intravenously back into the same person, where they migrate back to the bone marrow and begin again to regenerate the patient’s blood and immune system, now obliterated by the cancer treatment. This differs from allogeneic transplantation, which involves the use of a separate donor’s blood-forming stem cells. The not trivial distinctions between types of transplant are worth keeping in mind throughout the reading of this book. Nonetheless, there is enough common ground across types to be illustrative and to warrant some analysis in aggregate. For instance, each transplantation involves the use of high-tech, high-cost, intervention-intensive biomedical procedures, followed relatively soon after by outpatient recovery, usually in the private home and with care assistance from a loved one. Each, except autologous marrow cell transplants,16 also generally relies on the use of immunosuppressant drug therapies posttransplant to prevent rejection of the organ or tissue. And invariably the actual transplant itself marks just one segment of a much longer journey. Such a broad swath in sampling thus gathered a diverse array of perspectives and experiences that together revealed patterns spanning transplant types. Moreover, the commonalities across transplantation helped to shed light on its situatedness within larger sociocultural, political, and economic trends associated with biomedicine’s continued taken-for-granted emphasis on acute care.17 From this vantage point, throughout this book, I present transplantation somewhat less in terms of its uniqueness and more as a telling case study for understanding health care in the contemporary United States. Taking pains to work within the logistical realities and institutional traditions of the ebbs and flows of clinical life,18 while also following the lead of patients and loved ones, I became more attuned to and keenly interested in the back and forth transfer of transplant care between homes and hospitals, moved along by patients and kin. Participants warmly nudged me beyond what I could gather through in-depth semistructured and unstructured ethnographic interviews, by inviting me into their home and community spaces, where we talked and interacted on a less formal basis.19 Daily participant observation, then, took place in both clinical and domestic settings. I also attended reunion events organized by the Health System and Transplant Center, where participants and the clinicians with whom they had worked especially closely gathered and shared the news of late since the last time they’d seen each other weeks,

Introduction 15

months, or years earlier.20 These gatherings likewise offered opportunities to reconnect with people I had met throughout fieldwork, although I also developed lasting relationships with some, solidified through shared meals, ongoing exchanges of phone calls and holiday cards, and invitations to family events like graduations and baby showers. Methodologically, this move from clinical to home spaces afforded some key insights I outline in this book. Indeed, the primary setting for transplant caregiving increasingly is a person’s private home, with periodic outpatient trips for clinical evaluations or treatment at physicians’ clinics or dialysis centers. Pre-transplant time can be punctuated by emergency room visits and relatively brief hospitalizations for acute episodes precipitated by declining health or longer, even indefinite, stays when a patient’s condition has become so severe that the immediate future will bring either transplantation or death. Those who are too sick to remain home but do not otherwise medically qualify for inpatient care might stay in skilled nursing facilities for longer or shorter periods of time as they wait. This scenario can also become a reality for those who do not have adequate informal care support that could otherwise enable them to continue living at home as their health declines. While most of the persons I came to know lived within driving distance of the Transplant Center serving as the central hub of my research, a few transplant candidates had come from farther away. Depending on circumstances, some found themselves needing to live in temporary housing while they waited—whether in short-term rentals or hotels—so that they could get to the Transplant Center quickly enough, if and when an organ did become available. If a transplant is performed with no major complications, patients who live in close proximity often are discharged directly to their private homes after a relatively brief inpatient stay. Many kidney transplant patients, for instance, were home about one week after their surgeries. Those living farther away might go from the hospital to temporary housing in the local area until they had recovered more fully and outpatient visit requirements had eased. Depending upon their medical and financial state, the patients I met might stay in the Health System’s on-site hotel, in another local hotel, or in a local apartment where they could obtain a short-term lease. Those who could demonstrate financial need also had the option to stay at a large house, located a few blocks away from the Health System, which had been donated to the Transplant Center by a wealthy local family to help accommodate patients and their care partners. Post-transplant patients who were too sick to go home (or who unexpectedly found themselves lacking any tangible informal care support), but whose insurance would no longer pay for inpatient care, could be discharged to skilled

16

Transplanting Care

nursing facilities. This was not common in my observations, and none of the patients with whom I spoke had spent extended periods of time in nursing facilities after their transplant. Patients and loved ones move in and out of these various spaces from one turn to the next as they make their way through transplantation. In each of these contexts, unpaid caregivers regularly assumed some of the responsibilities of providing clinical care, in addition to the other dimensions of their relationship to the patient. In this and in other ways that I make clearer throughout this book, persons found themselves drawn into a blended biomedical-home sphere of obligations, often with new terms on which to negotiate their relations. Likewise, care could be transformed in both practice and significance. Thus I found transplantation, home life, kinship, and caregiving to be thoroughly interactive and mutually constitutive, and I steadily looked to their overlaps for both theoretical and analytical grounding. Webs of Care: Caregiving and Kinship

Although I do take into account the perspectives of professional clinical care providers, including social workers, nurses, dieticians, psychologists, and physicians, my primary focus is on unpaid, “informal” care. The amount of preparation and post-hospital care required by transplant candidates and recent recipients necessitates the presence of reliable support outside the clinic. In other words, as so much of transplant-related medicine is delivered on an outpatient basis, the transplant system effectively depends on unpaid care labor. This typically comes from spouses, parents, siblings, or others who fall into the most conventional categories of kinship in the United States.21 Indeed, the vast majority of all informal caregiving, beyond transplantation, is performed by people aged eighteen or older who consider themselves related to those they are caring for (National Alliance for Caregiving and AARP 2015; also Gubrium 1991).22 At the same time, due to various constraints—for example, other competing responsibilities, relational tensions within families, and the limits created by socioeconomic strains—such ties to potential social support can be (or become) thinned and unraveled. There are instances in which patients cannot or do not rely on natal, marital, or adoptive relatives to provide this level of care (see Frey et al. 2002). This, too, can present significant difficulties along the way, even as it might also animate creative expansions of relatedness, as I found at times to be the case. Nevertheless, webs of care overlap heavily with webs of kinship. I build here on some of the basic underpinnings of kinship scholarship, which rejects the idea that kin relations are limited to those created through “blood,”

Introduction 17

marriage, or formal adoption; instead, I look to power, practices, ways of knowing, and other forms of significance and substance tied to relatedness (Carsten 2000, 2004; Franklin and McKinnon 2001; Holy 1996). Kinship can be taken as a driving moral philosophy (McKinley 1981) revealing local values concerning binding obligations between persons (McKinley 2001). Under these lenses, not only might kinship carry with it the obligation to care, but in turn, the very giving and receiving of care might comprise essential components of relatedness (Borneman 1997). Backed with empirical evidence, the analytical premise that kinship and care can be cogenerative, especially in a US context where biogenetic relatedness is given so much cultural prominence, marks a continued extension of Emile Durkheim’s early and straightforward emphasis on the social (e.g., 1898) and beholden nature of kinship. I learned early on in my interactions with patients and loved ones that “care” is hardly a straightforward entity. It resists being pinned down to a single definition; it can hide and reappear, move and change throughout the transplant process. It extends toward other forms of support and mutually sustaining areas of life, comprising reciprocal webs—webs of care—in which patients and caregivers alike are enmeshed. One also need not be able-bodied to provide care,23 nor must one only be in a position of “giving care” or of “receiving care” at any given time; rather, one can engage in both simultaneously (Klaits 2009; Myaskovsky et al. 2005; Wendell 1996). As I make clear in this book, in the face of grave illness, transplantation can become the sort of thing a patient ought to do for others, even if one might actually rather not. The very pursuit of a transplant can become a caring act, borne largely out of a sense that it offers a patient’s best—perhaps only—hope for fulfilling obligations to loved ones (Heinemann 2014b). Additionally, in a historical moment when paid work cannot easily be sacrificed, a particular loved one might be considered more available to serve as a caregiver than other members of a patient’s network, if their own illness or disability already prevents their full-time employment or other occupation outside the home. Caring relations, then, are thoroughly mutable and variously defined in response to local frames,24 beholden to both sociocultural and political-economic context, even as caregiving cuts across as a primary quality of being human (Kleinman 2007, 593).25 This volume joins other recent inroads toward ethnographic examinations of care and its emergence at the intersections of interpersonal, intersubjective moral relations and larger political economies (e.g., Buch 2013, 2014, 2015; Garcia 2010; Han 2012; Livingston 2012; Yarris 2014a, b). It also engages care ethics scholarship (e.g., Fisher and Tronto 1991; Held 2006; Tronto 1993), attending to the multiple dimensions of care and its diverse attendant beliefs,

18

Transplanting Care

values, practices and intentions, encompassing both “caring about” and “caring for” (Glenn 2000). My scaffolding includes not only assistance with what health professionals call “activities of daily living” (such as feeding, bathing, walking, managing urination and bowel movements) or “instrumental activities of daily living” (such as household management, shopping, taking medications, using transportation), but also care in its more subtle forms, such as quiet attempts to shelter a loved one from fear or inconvenience or any other effort to make “daily life more bearable” (Mol 2008, 1). Connecting the Bigger Picture

Tim Ingold has described the “world we inhabit” as a relational field—not so much a network of distinct nodes but rather a “meshwork of entangled lines of life, growth and movement” (2011, 63). The “texture of the lifeworld is comprised of strands woven together”—the trails “along which life is lived” (2011, 69–70). In this light, places—home and hospital alike—are the tightly knotted paths of inhabitants whose “lines of wayfaring” simultaneously intertwine and extend beyond, just as threads extend beyond a knot (2011, 149). I find this to be a useful framework for conveying the complexity of the transplant process, where transplant hopefuls and their loved ones are fellow “wayfarers” whose entangled paths mesh with the worlds of transplant medicine and accommodate its extension into the places of their daily lives. I have organized this book’s structure to trace the kinds of journeys that persons make toward, through, and beyond transplantation, in the imbricated domains of home life and health care in the United States. Chapters 1 and 2 each explore the practices, obligations, events, and interpersonal histories that flow into an interweaving of everyday life with transplantation. More specifically, chapter 1 describes the preparations that transplant hopefuls and their caregivers must purposefully make in order to comply with pre-transplant requirements, while chapter 2 examines how the road to transplantation can in fact emerge gradually and inadvertently, out of difficult life circumstances and multiple absences of care. Both chapters emphasize that participants’ life narratives do not begin and end with the procedure, underscoring the importance of a thoroughly contextualized view. Chapter 3 centers around the intersections of US health and other social policies with the on-the-ground realities of grave illness and transplantation, and illustrates how the nation-state’s fragmented system further exacerbates suffering. In addition to making transplantation inaccessible to some, a lack of appropriate health care, coupled with an overemphasis on individual responsibility, can itself set patients on a path toward transplantation in the first place.

Introduction 19

Chapter 4 emphasizes that a patient’s engagement with transplant is rooted in one’s local world of multidirectional moral relations, or, reciprocal webs of care. Deeply attuned to the fact that loved ones rely on them (and often reminded by loved ones of their obligations), patients’ very pursuit of a transplant can in fact become an act of care in itself, borne out of an obligation to lessen the impact of illness, and to remain alive and available to be there, and to care for, others (Heinemann 2014b). Chapter 5 in turn demonstrates that the health of supportive persons likewise is intricately interconnected with the transplant endeavor: caregivers often are, or become, patients as well. Although it is not uncommon for illnesses to develop during one’s tenure as a caregiver, health concerns often exist well before entering into the transplant caregiver role. Almost counterintuitively, this can especially position health-compromised persons to provide informal transplant care. Furthermore, otherwise physically healthy caregivers might become patients by seeking to become living donors, a status some participants navigated via efforts to veil its accompanying distresses. Chapter 6 closely examines the ways in which recipients and loved ones incorporate transplantation into daily home life by rearranging their spaces and relationships to accommodate (Heinemann 2015) its many demands, even long after the actual procedure. As domestic and clinical domains overlap, informal care can simultaneously take the form of both clinical expertise and personal attachment. Chapter 7 then looks more directly to the ways in which social and kin relations might be creatively knit together or become undone and tattered under the weight of assumed self-sufficiency and idealized expectations concerning the nuclear family. Even as persons draw upon and prop up dominant conventional ideas about kinship and caregiving in the United States, the daily realities throughout transplantation can quite effectively erode notions that the nuclear family is an ample and ready well of care support. While individuals and families often do construct local moral responses to unmet needs, such responses are not a structured given, are not guaranteed, and do not exist for everyone. By exhuming instances where transplant hopefuls and recipients find they cannot rely on those they had assumed would be there for them, I set up my concluding arguments and applications. The final chapter of this book resituates my findings within feminist care ethics scholarship. I work to apply these insights, building on the notion that care—from high-tech biomedical care to thoroughly quotidian acts of mutuality—must be better understood as a public value, worthy of social policies that materially support it. Instead of focusing on the more sensational aspects of transplantation, I intend in these pages a deliberate examination of the practice as a window onto

20

Transplanting Care

the larger and growing interweaving of high-cost, intervention-intensive health care with quotidian realities in the United States. Such an expansive approach allows insights into some of the systemic and structural failures that can set patients on a path toward transplantation in the first place and that can leave patients, caregivers, and other loved ones vulnerable, even years after a successful transplant. By examining the articulation of transplantation with everyday life through informal caregiving relations and situated within the broader context of health care in the United States, I hope to deepen our understanding of both the theoretical and the practical implications for wayfarers on these very sorts of journeys.

Chapter 1

Early Navigations

The outpatient clinic at the Transplant Center serves as a primary interface between home and medical arenas. It is there that patients and loved ones learn more about clinical expectations, and it is there that transplant clinicians work to get a sense of how well suited a patient may be for transplant. On renal and pancreas transplant clinic mornings, patients and any accompanying family members, friends, or others typically arrive at the front desk around 8:30. From there, they are led down a series of hallways. Shortly after entering the brightly lit exam room, and often with little more time than to sling a jacket over the back of a chair and set down a purse or notebook, transplant hopefuls begin a marathon of back-to-back appointments with nurse transplant coordinators, social workers, nephrologists, psychologists, surgeons, dieticians, and financial counselors. Patients, usually remaining in their street clothes, are not asked to put on a hospital gown. Except during certain evaluations, they often sit in one of the few chairs lining the room, rather than on the examination table. By the time they arrive here on any given morning, however, they likely have donned gowns and sat on exam tables several times before in other clinical settings. Many have dealt with chronic health problems long before beginning the actual transplant process. And for all, these in-clinic consultations comprise just a portion of a long process that extends well beyond that appointment day. Inseparable from the long arc of daily lived experiences over time, lines of movement through life and illness, growth and decline in transplantation draw forth from the past, even as they finger out to imagined, hoped-for futures. If the procedure itself becomes the place gravely ill patients and loved ones intend to reach, then they arrive there via a labyrinth of uncertainties, moral tensions,

21

22

Transplanting Care

and logistical challenges, as I illustrate in this chapter. By following patients through multiple requirements—from making bodily preparations to aligning finances and insurance, ensuring sufficient care support, meeting dietary expectations, and even adjusting home itself to meet clinical needs—I trace the early navigations patients and their loved ones make in order to become “good candidates” for a transplant. Here, transplantation’s situatedness in webs of care and kin begins to come into focus. Clinical Encounters

After checking in with the nurse coordinators when I arrived at the clinic one morning, I learned of a new patient who had just arrived and was getting settled in Exam Room A. He was scheduled to begin evaluations for a kidney and pancreas transplant. Walking down the hall, I passed other rooms—some doors open a crack and others closed shut—where patients and family members sat, verifying information in their charts, and having their first appointments in a whirlwind prenoon clinic schedule. As I approached the windowless door of Room A, I knocked and was invited into the room where a middle-aged man with short black hair and a long beard was seated; he wore olive green jeans, a soccer jersey, and tennis shoes speckled with flecks of white paint. I later learned that he was originally from Central America. He sat, resting his chin on his hands, which were stacked one over the other on the handle of a brown wooden cane. Though only in his forties, he could have been mistaken for approaching retirement age. His wife, also middle-aged, white, and with blond hair piled high in a loose ponytail, was sitting next to him with her head tilted down, resting her eyes. “Mr.  Saiz?” I asked, and Mrs.  Saiz started from her doze, quickly straightening herself. The couple became visibly more relaxed as I explained that I wasn’t there to evaluate them as part of the medical team. After learning about my study, they invited me to accompany them through their morning. Preexisting Conditions

Though there was no guarantee that he would even qualify to become a transplant candidate, let alone that he would receive one, the conversations throughout the morning together covered all turns of the process as though he might. Shortly into one of his first consultations, a pharmaceutical financial counselor presented Mr. Saiz with a long list of medications highlighted in blue. These were the medications he would likely be taking by the time of discharge from the hospital following a successful transplant. Counting them up, he asked, “Twenty more?” The counselor pointed out that, with the transplant, he no



Early Navigations 23

longer would need some of his current prescriptions. She explained that this list featured the standard medications that nearly everyone takes following a kidney-pancreas transplant. Financial counselors, like other key professionals on interdisciplinary transplant teams, are charged with both screening patients and advising them on how to become and remain viable candidates through to transplantation. Certainly, insurance status itself is consequential, and lack of ability to pay for transplantation and posttransplant care can be considered an outright exclusionary factor (King et al. 2005). Beyond the cost of the procedure itself, the numerous and substantial expenses not covered by insurance can destabilize socioeconomic positioning for middle-class patients and can spell disaster for the working poor, potentially barring access altogether for those in circumstances where extra money simply is not available. Concerns about insurance and out-of-pocket costs were a nexus of distress for many during pretransplant preparations. Mr. Saiz, who once had earned the household’s main income through his work in construction and home improvement, continued, “Now comes one question, and I’m probably jumping the gun here, but I want to go back to work. Is the insurance company going to say they won’t cover the meds because it’s a preexisting condition?” In this pre–Affordable Care Act moment, the financial counselor could not answer for sure and said Mr.  Saiz would need to check with his employer. Mrs. Saiz pressed, “But if the new company has over five hundred people, they can’t do preexisting conditions, right?” Leaving it at that, the counselor continued on with instructions that his Medicare plan (part of the End-Stage Renal Disease Medicare program, which I discuss in chapter 3) would cover only the medications that he will take for the rest of his life.1 Furthermore, some of these prescriptions are for vitamins and supplements, which no insurance plan would likely cover. For meds that ­aren’t covered, the counselor went on, Mr.  Saiz could apply to medication assistance programs and would probably qualify because of his financial status. Still, she explained, they should start saving up now for two weeks’ worth of prescriptions because it takes about two weeks after transplant to get everything arranged with insurance and other assistance programs. The couple likely would see a bill for about fourteen hundred dollars for medications alone after the surgery. The pharmaceutical transplant counselor dealt only with the matter of medications, which says a great deal about the central importance and formidable costs of immunosuppressants and other posttransplant medications necessary to keep recipients and their grafted organs healthy. Later in their series of clinic appointments, however, the couple also met with the financial

24

Transplanting Care

counselor who handles all other transplant-related financial matters. She was able to answer their many questions about eligibility for Medicaid in light of their current income. Notably, though Mr.  Saiz currently received only disability benefit income, and Mrs. Saiz received disability plus a small income through a part-time job under a program for disabled persons, the counselor pointed out that their income was above the allowed amount. They would only qualify for Medicaid via a “spend-down,” in which they would be required to pay for a portion of his medical care out-of-pocket until reaching a certain threshold, and then the state would cover the remaining medical costs. Overall, it was clear from this consultation that, just as the medical team would advise Mr.  Saiz on bodily preparations for transplant, the financial counselors were there to coach him toward properly aligning his finances as well. Team members regularly pressed upon patients that they remained available to answer questions at any time. The pharmaceutical transplant counselor ended, for example, by assuring Mr. and Mrs. Saiz that she would also meet with them at the time of the transplant so they could review all of this again. Still, the amount of information exchanged during appointments could be overwhelming. At one point during the conversation about his medication requirements, I noticed that Mr.  Saiz began to look confused and worried, and his wife, likely noticing the same, turned to the counselor and said, “I do it—don’t worry—I do the medicine,” indicating to both the counselor and to her husband that she would stay on top of the medications; she would attend to any concerns. Arranging Care

In transplantation, from the beginning informal caregivers can be key to a patient’s ability to successfully navigate the process. As Mrs.  Saiz demonstrated, in addition to offering emotional support, caregivers often organize myriad logistics. Many caregivers drive patients to and from clinic visits, coordinate paperwork, prescriptions, and appointments, and are integral to the management of the large amounts of information that flow back and forth between patients and the transplant team. Caregivers help patients answer clinicians’ questions, remember which questions to ask clinicians, and help keep track of clinicians’ answers. An attentive caregiver quite literally can mean the difference between living and dying. For instance, when heart transplant hopefuls must use a mechanical heart assistance device (e.g., a left ventricular assist device, or LVAD) prior to a transplant, a primary informal caregiver must oversee the technology and monitor the patient at home, as well as provide the other forms of support that will help to keep the patient alive as they wait and



Early Navigations 25

hope for a donor heart to become available (see Casida 2005). One transplant social worker noted: [In] heart transplant, you might have a left ventricle assistive device, or you might have a device that you have to keep track of or tabs on and make sure that it doesn’t fail because if it does fail then you’re dead. [ . . . ] Sometimes the complexity is the real deal breaker and that’s what we’re running into with heart transplants with certain people because they don’t feel comfortable with learning this new-fandangled device and, “Gosh darn it if I have to learn this and do all this other stuff and if I mess up you’re dead, I don’t know if I want to take on that responsibility.”

The amount and types of care required can vary by the type of transplant and the complexity of a patient’s particular case. Kidney transplantation, for example, generally requires somewhat less intensive caregiving than does heart transplantation. But all hopefuls must be able to identify at least one person who will be there for posttransplant care. Social workers often play a pivotal role in this area by helping patients to identify potential care partners and maintain copacetic ties with them (see Beder 2006). I did meet patients who had little to no informal care support (as I explore more fully in chapter 7), but these instances were relatively rare. More common, those persons surrounding a patient worked to make caregiving arrangements that met practical needs while simultaneously upholding expectations about who should care for whom. Notably, while characteristics of organ donors, transplant candidates, and recipients are meticulously recorded by the US Organ Procurement and Transplantation Network, data about transplant caregivers are not similarly compiled.2 It has been well-documented, for example, that women caregivers generally outnumber men in the United States, with the 2015 National Alliance for Caregiving and AARP study finding that 60 percent of unpaid US caregivers are women, but comprehensive demographic data are lacking on who provides care to transplant candidates and recipients.3 In my own observations, patients often assembled informal care “teams”—comprised of various combinations of a spouse or partner, parents, adult children, siblings, other relatives, friends, and neighbors—that included both women and men. One blood-forming stem cell transplant patient who had lived alone since his wife had passed away some years earlier, for instance, had no main informal caregivers who were women. His adult son (and only child) took leave from his job to serve as his primary care partner, and a male cousin served as a temporary caregiver partway through his recovery. Certainly, though, gender alone does not determine

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transplant caregiving. (I explore gendered norms in caregiving more fully in chapter 6.) Relations of care are more deeply shaped by shared values concerning moral obligations. Participants often remarked that their care arrangements were based on a foundation of mutual certainty that “I would do anything for them and I know they’d do anything for me.” Spouses and domestic partners most commonly served as default caregivers throughout the transplant process (of the thirty-nine caregivers with whom I spoke, twenty-two were patients’ spouses). Related to this, home life can substantially affect how one fares in the process, and various circumstances could profoundly alter the types and amounts of support available from those expected caregivers. For example, a patient is in a more perilous position if their would-be caregiver drinks alcohol to inebriation on a regular basis—all the more so if the patient seeking a liver transplant has cirrhosis precipitated by long-term alcohol use. Other risks come to the fore if the patient and caregiver are in a relationship riddled with domestic violence. None of the care arrangements I directly observed fit these descriptions, but clinicians easily recalled instances that did, noting the difficulties they could portend for patients at any stage of the transplant process. Becoming a “Good Candidate”

Serving at once to screen potential recipients and to prepare patients to become good candidates for the procedure, pretransplant consultations tend to concretize the hypothetical. They anticipate transplantation but by no means guarantee it. In the course of a meticulous evaluation process, several factors are taken into account, some of which are quite beyond an individual’s control. Even so, patients quickly learn the importance placed on both ensuring that their bodies become and remain an ideal environment for a grafted organ and demonstrating that they are and will remain compliant with medical requirements. Writing from the context of a community psychiatry program, anthropologist Paul Brodwin (2010) has described patient compliance as an “assemblage” of discrete but carefully orchestrated material forms (e.g., the actual medications and tools for administering them), ideologies of biotreatment and professional hierarchies, and routine actions. Pretransplant compliance similarly entails a coming together of the material, the practical, and the ideological. Hopefuls are routinely asked to carry out a multipronged series of medical orders, which can include taking medications, losing weight, avoiding contagions, refraining from substance use, having dental work completed, undergoing surgical procedures to resolve other health issues, and for kidney candidates, faithfully maintaining a dialysis regimen. These physician-prescribed methods of bodily



Early Navigations 27

preparations are carried out within a landscape of mutually reinforcing ideals. One holds that a patient’s body can and must be made a viable host for an organ. This active shaping simultaneously becomes the means of assurance that a patient will continue to follow prescribed regimens after the transplant, to continually remain a viable host for a grafted organ. If a patient regularly misses appointments pretransplant, then they later might also regularly miss doses of immunosuppressant medication and the organ becomes lost to rejection. Thus, like most programs, those at the Transplant Center have a policy of considering a history of chronic medical noncompliance to be an exclusionary factor for transplantation. This noncompliance can be regarding medical treatments, regular failures to attend appointments, not taking prescribed medications, or consistently engaging in behaviors—against medical advice—that the transplant team feels would affect the patients’ ability posttransplant to care for themselves and their new organ. A detailed and comprehensive quantitative picture of who is denied access to transplant waiting lists, and thus to a transplant, is elusive. Information about the standardized donor allocation system for each organ type is accessible via a quick internet search, and figures describing the demographic makeup of wait-listed patients and transplant recipients are likewise publicly reported. Detailed data, however, concerning denials of admission to waiting lists are not broadly available,4 and, compared to policies governing allocation of organs to patients already on waiting lists, there is less universal regulation of the specific wait-list selection criteria and process used from one transplant program to the next (see Kovesdy and Molnar 2014). From a clinical perspective, pretransplant evaluations and requirements are intended to decrease the risks associated with the transplant surgery and recovery itself; compliance with them is considered largely a matter of patient safety. From a social perspective, though, they entail much more. The following provides some illustration of how selection criteria can shape the lived experiences of persons making their way toward transplant. (Un-)Foreseeable Futures

Although Cameron, white and from a middle-class background, had long anticipated a transplant, his complete loss of kidney function caught him quite off guard. Now in his early twenties and chipping away at coursework in a local community college program, the timing of his transplant had been a looming unknown since he was twelve years old, when Cameron was sent to a nephrologist after a routine junior high school sports physical detected excess protein in his urine. A kidney biopsy revealed that he had a form of nephropathy:

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Cameron’s immune system was attacking his kidneys. Suddenly confronting existential questions that typically exceed the maturity and worldview of a twelve-year-old, he found that, “From then on, it was no longer about being young and worrying about kid problems and kid stuff. Automatically, I was thinking about just the bigger picture. I was thinking about things completely beyond a twelve-year-old. I was worried about dying and finding love and starting a family and it just completely changed the way I thought about life.” His doctor told Cameron that eventually he would need a kidney transplant, but the timing of such a procedure could not be predicted. “They said it could be six months from now; it could be ten years or eight years, ten years from now. And we just never knew, so it was kind of play it by ear and hope for the best. Yeah, I was fortunate to live for ten years with the disease before I needed a transplant.” Months before I met him, when Cameron had begun experiencing some physical weakness, he developed a rigorous exercise regimen as a way of keeping himself healthy, and in an effort to help keep his kidneys working as long as possible. And I was starting to feel pretty good, actually. I went on vacation and when I came back I had a doctor visit. They did lab work to test, see where my kidneys were at, and that week after the doctor visit, I knew something was wrong, I couldn’t put my finger on it but I just felt like, like I was dying, actually. I felt weak and um, not sick but, I just felt like something was wrong. [It’s] hard to explain. But I got a call from the doctor and he said, “Uh, your kidneys are gone. They’re all the way gone. You gotta start dialysis tomorrow, and we gotta put the catheter in tomorrow. It’s an emergency; we can’t wait anymore.” So it was just out of the blue when that hit me, because he had always told me, “We want to avoid dialysis at all costs. We want to time it so that, you know, we want you to keep your kidneys for as long as possible. But we also want to have the transplant before you need dialysis.” So there is this kind of a balance of where they wanted it to happen. And we just, it happened too fast. We weren’t able to catch it in time. So I had to start dialysis.

From the age of twelve, Cameron had become immersed in a future-oriented biomedical narrative presuming the possibility of careful monitoring and smooth timing in the course of his renal decline. But in the end, even when kidney failure was all but certain, the failure’s exact timing escaped prediction. His experiences resonate with Ronald Maynard’s (2006, 227) observations regarding double-lung transplant among adults with cystic fibrosis: transplantation’s “linkage of personal and technological futures” is a thoroughly modern



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pursuit, rooted within notions of progress and US values of “activity, achievement, and future orientation.” Where eventual renal failure is foreseeable, as it was for Cameron, medical teams might strive to arrange for a “preemptive” kidney transplant before a patient ever has to begin dialysis. While this practice has been touted as a way to improve quality of life and long-term survival (e.g., Davis 2010), its medical advantages have more recently been called into question (see Charnow 2012). Moreover, there is evidence that preemptive transplants tend to go to those who already enjoy relative social advantage (Kasiske et al. 2002), which parallels ongoing inequities overall in transplantation, recorded from one year to the next and critically analyzed by scholars in several disciplines (e.g. Arthur 2004; Eggers 1995; Gordon 2001; Klassen et al. 2002; O’Hare, Johansen, and Rodriguez 2006; Wolfe 2003). In Cameron’s case, because he’d had so many years to, in his words, “mentally prepare” for a transplant, he felt ready when the time eventually arrived that his kidneys were no longer functioning. His mother likewise had already been evaluated by the transplant team and was set to become his living donor.5 Nevertheless, when he and his nephrologist rather abruptly learned that his kidneys were “all the way gone,” not only was a preemptive transplant impossible, but his path toward transplantation became all the more complex. Specifically, when it came to light during his pretransplant evaluation process that Cameron had a past history of using marijuana, the transplant team required that he undergo a period of counseling and regular drug testing before he could be approved for the procedure. Such mandates are common; potential candidates who have any history of substance abuse are routinely asked to demonstrate a commitment to avoid all alcohol and recreational or illicit drugs before and forever after transplant. A patient might be asked to sign a contract attesting to their agreement to abstain, or to agree to random screenings, or to attend a treatment program—or some combination of these. Cameron, however, found these requirements to be immensely frustrating, particularly because of the extra time they added to his waiting period when he had been preparing for transplantation from early adolescence: “So we’re ready, we’re ready to move on. It’s just, they want me to do the counseling now. And they need to feel comfortable that I’m going to be a good candidate for years and years after the transplant before they want to do it. [ . . . ] I understand why, so I understand the idea behind it. However, in my case, you know . . .” From the perspective of clinicians, the purpose of pretransplant requirements is not to curtail access to transplantation, but rather to ensure that patients are fully informed, consenting individuals,6 who will not only be good stewards of transplanted organs but are also as likely as possible to

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benefit from a risky procedure. One physician explained that the “Selection Conferences”—in which the transplant team as a group makes decisions about individual patients’ readiness (or not) for placement on a waiting list— could be more aptly called “Safety Conferences.” If the team decides a person is not (or not yet) a good candidate for a transplant, it usually is because in the transplant team’s collective opinion, on balance, the patient would be likely to live longer without a transplant. Cameron was emphatic that the extra hurdles were unnecessary in his case because he understood very well the importance of posttransplant abstinence from alcohol and drugs; he also knew, however, that he had no choice but to comply with the requirements set forth by the clinicians. Bodily Preparations and Complicated Ideals

Beyond the physiological, creating an ideal bodily environment for a transplant leans on social practices within multiple, interrelated contexts and sometimes competing ideals. Some stipulations are not directly related to transplantation per se, but rather grow out of a layering of health matters along the way. And when clinicians call for regimens that do not readily map onto daily realities, such directives can place transplant hopefuls in situations in which they must decide whether and how to adhere to medical orders, in the face of contradictory values that hold sway in other domains of daily life. For Cameron and many patients with renal failure, the process of actively seeking a transplant also coincided with the commencement of a dialysis regimen, which is shot through with additional complexities. For instance, persons on dialysis must follow a diet that is low in phosphorus (which can pull calcium from the bones) and, even more important, low in potassium (which affects the heartbeat and can be fatal at excessive amounts in the blood). Both of these minerals can accumulate to dangerous levels, not because of the dialysis itself but rather because the kidneys no longer remove these substances from the body, and hemodialysis does so only periodically.7 Cameron was ardent, “I have to watch my diet: [ . . . ] there are certain things, if I eat too much of, it can stop my heart instantly.” Potassium is found in foods that usually are otherwise considered to be healthful, including many fruits and vegetables. And several of the foods that are high in phosphorus likewise are popularly touted as key components of a healthy diet, including milk and cheese, dried beans, peas, nuts, and peanut butter.8 Patients—especially those with diabetes—might previously have been coached to eat the very foods they now should avoid. Furthermore, the social significance of food complicates the implementation of these guidelines in a person’s daily life.



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For example, Mr.  Saiz, who had moved to the United States from his beginnings in Central America, underscored the on-the-ground complexities of following dietary guidelines during his meeting that morning with the transplant team’s dietician. This conversation was one part of an extensive evaluation for a hoped-for kidney and pancreas transplant. This dual transplant could address both Mr.  Saiz’s end-stage-renal-disease (ESRD) and the diabetes that had long eluded control and eventually damaged his kidneys to the point of failure. Answering the dietician’s questions about his daily eating habits, he began by listing what he ate for a typical breakfast: “an egg white, a cup of decaf, toast, and a couple of pieces of turkey bacon.” He went on to describe his noon and evening meals, but then added that his diet varies when he is eating with his Central American relatives. The dietician replied, “You might have to just say, ‘I have to watch my potassium,’” and Mr. Saiz chuckled: “My family don’t believe in doctors and medicine. They believe that food doesn’t affect you in that way—they offer you remedies. They don’t have nothing to lose but to take a plane here and chew my butt! If they offer you something, you take it and say ‘Yes! I’ll try that!’” The issue was dropped at this point, and the conversation moved on. No alternatives were discussed other than to break with his family’s expectations and follow directly his dietary restrictions. Clinically, the reality that certain foods are dangerous for patients in renal failure stood on its own, decoupled from the sociocultural realities of sharing food (see Harbers, Mol, and Stollmeyer 2002), especially among kin. It fell to Mr. Saiz to figure out how to negotiate these two incommensurable perspectives. Being asked to refuse certain foods offered by family members might be considered a relatively small matter, passable even by Mr.  Saiz with a chuckle. But becoming and remaining a good candidate for transplantation, particularly kidney transplantation where dialysis often precedes a transplant, involves overall an intense relationship with the techniques and technologies of regimented biomedical interventions. Preparations can entail rather painful or lengthy treatments, ranging from cardiovascular interventions (to minimize some of the general risks associated with major surgery), to major dental work (because oral infections can become quite dangerous when taking posttransplant immunosuppressants). Moreover, if a patient whose kidneys no longer function must begin receiving regular hemodialysis treatments before a transplant can be performed, then an access point must be created under the skin, usually in the arm (although the thigh is another potential access point). This might be done via the surgical attachment of an artery to a vein (this is called a fistula), but it also can be accomplished by

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inserting a soft tube (called a graft) to link an artery on one end, to a vein on the other. In either case, this becomes the site into which two large needles will be inserted each time the patient goes for a dialysis treatment, allowing blood to flow out of the body through one needle, then pumped through a machine where the blood is cleansed of toxins and extra fluid by a dialyzer (a function which the kidneys are no longer able to perform), and then back into the body through the second needle. One patient, Emily, Mexican American and in her mid-thirties, told me about the day she learned that her kidneys no longer functioned and that she would need to begin dialysis (I relay the fuller details of Emily’s story in the following chapter). Her doctor had just delivered this news and then asked her which arm she used most. When she indicated her right, he began to explain how important her left arm now would become. Emily recalled, “And he was like, ‘Okay, from now on, this is your golden arm. You’re not going to let anything happen to it. You’re going to take good care of it now; be sure that nobody sticks anything [into it]. You can’t have your blood pressure taken on it. Nothing like that.’ And that’s when I found out that he was going to put the access there. So he said, ‘Treat this arm like gold. Don’t lay on it. Don’t do any heavy lifting with it.’” The arm at which an access is created becomes a person’s “golden arm” because there are only a few places on the body suitable for creating a regular access point for dialysis. If one site is “lost” to infection or the fistula or graft becomes damaged in any way, then another access must be created. But this medical reality, while salient, did not map easily onto the fact that Emily also had a very young daughter who still needed to be fed, kept in clean diapers, clothed, and regularly lifted and held. Her husband, mother, and brother would be available to help with these activities, but such care practices involved longanticipated aspects of motherhood that Emily had thoroughly desired and did not especially want to give up. Progression toward transplant, though, depends ultimately on following medical orders, even when compliance might run against the grain of other areas in daily life. Notably, while some might have questioned or complained, few patients or loved ones actually expressed outright rejection of the biomedicalized ideals to which they were asked to adhere.9 For example, Bernard, in his late sixties and African American, a kidney transplant hopeful (to whom I will return in chapter 7), said he was sent home from a pretransplant screening with instructions first to be treated for vascular problems. He saw this as a step already toward improving his health, “If I was still . . . waiting to be evaluated for the transplant list I’d have these problems that are still building up and



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they’re still working on me. Basically . . . I’m healthier now because of what I found through the evaluation.” Michel Foucault linked the rise and prominence of biomedicine to its resonance with already-existing sociocultural forms and discourses (1973 [1963]), pointing to some of the historical vectors (including new surveillance technologies) by which bodies and populations became disciplined, docile, and eventually self-regulating entities (1977 [1975]; 1978 [1976]). In describing his notion of “bio-power,” Foucault also referred to the use, beginning in eighteenth-century France, of “explicit calculations” and “knowledgepower” to render people more predictable and governable through focusing on matters of the body, health, and life (1978 [1976], 143–145). The willing adoption of prescribed requirements among transplant hopefuls can be likened to a form of disciplined self-monitoring in this very sense. In some clinical encounters I witnessed, it was apparent that patients felt they were being evaluated for more than their kidney functioning and blood type. They embodied a sense that what they conveyed at these appointments could be used to determine whether and when they would be admitted to a transplant waiting list. During my efforts to find time between clinical appointments to talk with participants, if a physician or other clinician came to the examination room for their evaluation, I observed that a “knock-knock” on the door often prompted patients and their care partners to sit up straighter to demonstrate a comportment of attentiveness and compliance to whomever walked into the room. Patients and care partners at times worked together in this regard. In one instance, when a clinical psychologist asked a patient if he smoked, he said that he had quit two weeks ago. His wife asked worriedly, “Is that OK or does that hurt his chances to get on the [waiting] list?” She emphasized at length her husband’s ample family support to avoid a return to smoking. The specter of agentive control can disappear and resolidify at odd intervals, though, as Cameron articulated: “Right now most of it’s out of my hands. That’s another hard thing to accept.” Patients who had been “certain” that they had done everything they needed to do and very soon would be wait-listed, might be disappointed at any time with news from a member of the transplant team (usually it was the nurse coordinator who would relay the information) that the results of a lab test necessitated follow-up testing or another procedure before they could be added to a waiting list. Even as patients are tasked with becoming and remaining good candidates for transplant, the path is full of uncertainty. Complications and decline could happen quite suddenly, without warning, and without any etiology linked to a patient’s actions or behavior. This is especially

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significant because the longer the amount of time spent waiting for transplant (whether on the official waiting list or not), the greater the odds become that a patient will experience declining health related to their organ failure. As Cameron explained, this is no small matter, even when a technology like dialysis exists to do the job of organs that no longer function. He said, I wasn’t sure if I could make it six months, the way things were going, the way I was in and out of the hospital. It’s just been a bit frightening that there are more complications, when it started with just kidney problems. And now there’s heart problems and all of my other organs are under stress from the dialysis and I feel, I just feel much worse than I used to. [ . . . ] There is just a lot of tension and danger to the dialysis. That’s kind of scary, you know? . . . I didn’t know I could die from dialysis!

Though dialysis keeps patients alive, it also comes with its own health risks and limitations. After being on hemodialysis for only a few months, for example, Cameron told me he’d already had multiple infections from the central venous catheter. This catheter, or “central line,” is inserted into to a large vein, often in a patient’s chest or neck, and leads directly to the heart. Medications can be directly administered through it, but patients might also be dialyzed through a central catheter until their fistula—meant for longer-term use—has fully healed. As an access point, it usually is meant only to be temporary. Because it is a relatively small opening for blood to flow through, the effectiveness of dialysis through a central line can be reduced (less blood circulates through the machine and therefore it is cleansed less thoroughly). And, even taking great care to ensure that the area is kept clean and dry, a patient with a central line can be vulnerable to serious infection. Cameron told me his line had been lost to infection and switched back and forth across his chest three times. Moreover, he said he’d needed to undergo heart surgery due to a blood clot that had formed following complications with the catheter. Though Emily had a fistula in her arm, it had been damaged when a dialysis technician tried but failed to insert a dialysis needle into it at the beginning of one hemodialysis session. She’d subsequently needed to go back to using her central line for dialysis. During one interview, she moved her shirt collar to the side and pointed to the tubing at her chest, telling me, Emily: My whole summer came and went and I didn’t ever get to go swimming because of this and I didn’t get to take my [toddler-aged] daughter, for that matter, to the swimming pool either because of that.



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Laura: Because you have to keep water away from it? Emily: Right, I can’t submerge, because this [pointing to the tubing] leads to my heart. So any infection could be really deadly. So you know, I have to restrict all kinds of activities that I’ve [wanted] to do this summer. The inability to take one’s daughter swimming, like needing to refuse food offered by relatives, might at first glance be a relatively small matter, but again the constraints contribute to the cumulative ripple effects for patients and kin networks. It also demonstrates that the detriments of this intense relationship with regimented biomedical interventions, even in the early steps toward transplantation, can be felt by patients most palpably through their ties with loved ones. Aligning Home and Clinic

Because most transplant candidates and recipients actually spend the majority of their pretransplant waiting time and posttransplant recovery outside the hospital setting, bodily preparations take place largely in the context of everyday home life and among kin. One outgrowth of this is that patients’ housing circumstances are taken into account during pretransplant evaluations. Housing situations deemed inadequate can preclude movement toward a transplant. Social workers could readily recount stories, for example, of foreclosure, eviction, divorce, and even escape from domestic violence suspending patients’ progress along the way. And for those whose housing situation meets evaluation criteria on a general level, the clinical requirements associated with transplantation tend to work their way into private homes by demanding that patients and loved ones modify their domiciles to more specifically accommodate these medical needs. Some find that they must rearrange their living spaces as their health and mobility declines so that bathroom, sleeping, and other needs all can be met on the same level of the house. One transplant social worker explained that heart transplant candidates in particular often must make changes to their home environment. For example, if a patient in heart failure requires the use of a left ventricular assist device, their home must be equipped with threepronged, grounded electrical outlets. “So,” the social worker explained, “we run into those issues when we’re trying to . . . get them to be a viable candidate [for heart transplant].” Across transplant types, some had to move to a different home altogether. Emily, for example, discovered that the apartment in which she and her family were living had a serious mold problem, and they promptly moved to a new apartment because of concerns that the mold would pose a

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danger to her and therefore her transplant, especially once she began taking immunosuppressant medications. Still others seeking transplant procedures that were not available near their home locations, and who lived outside of the immediate vicinity of Metrotown, had to make arrangements for where they and their caregiver(s) would stay, often for an extended period of time, through the transplant and in the early days of recovery.10 Some sought temporary solutions to the dilemma of distance. Patients might pursue one of a number of options for readying themselves to come quickly to the Transplant Center when and if a matching transplantable organ became available, with decisions turning on a confluence of the patient’s location, financial status, and personal preferences. Those living several hours away might either charter a small airplane or work with one or more airline companies to arrange in advance a guarantee that they may board the first available flight should they get “the call” from the Transplant Center. Yet another possibility could entail careful monitoring of one’s status on the transplant waiting list (to the extent possible) and then moving to a temporary residence near the Transplant Center when the likelihood increased that one might be called within the coming months. This prediction could be especially difficult to manage, though, given the actual uncertainty of the timing for when a matching organ might become available, particularly when living donation was not an option. In some cases, patients anticipating a very long waiting, treatment, or recovery time found it necessary (or at least their best option) to fully relocate to Metrotown. I Tell Them, Hey, You Know the Transplant Center Is There!

One married couple, Edward in his early seventies and Tamara in her early forties, both African American, lived in a small city about ninety minutes from the Transplant Center. Edward had lost kidney function due to polycystic kidney disease,11 and, at the time of our extended interview, Tamara was in the midst of trying to meet medical requirements to become his living kidney donor. She also handled all of the paperwork and communication with the transplant team. Her transplant-related responsibilities constituted a nearly full-time occupation as she coordinated appointments, organized documents, filled out forms, and integrated medical orders into the couple’s daily lives. This included not only filling Edward’s prescriptions and making sure he took the correct ones at the correct times but also maintaining her own diet and exercise regimen. Citing increased risks of postoperative complications associated with being overweight, the medical team had insisted that Tamara would meet medical criteria to become a living donor only after losing several pounds. Together, the couple



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expressed to me their relief that they’d had the means for Tamara to quit her job, allowing her enough time to manage all this coordination. They also had converted an entire room in the basement of their one-story house to become a workout room, where Tamara could use and store an exercise ball, resistance bands, floor mats, and weights and could work out to exercise videos. In a literal sense, they had adjusted their home space and their lifestyles for the sake of the prospective transplant. But even greater changes were soon to come, Tamara explained. They probably would be moving soon to a townhouse located in a new subdivision, more than an hour away from their current home, but just fifteen minutes away from the Transplant Center, where Edward would seek follow-up care for the indefinite future. This decision, though practical in many ways, was objectionable to Edward’s longtime friends and neighbors in the community. His social network long predated the couple’s partnership, and they assumed that Tamara herself, rather than the demands of transplantation, was the impetus for his leaving. Tamara explained, There might be someone saying, “I don’t want Edward going to Metrotown.” You know, I tell them “Hey, you know the Transplant Center is there!” And there might be some statements in there, “Well, she took him away from us.” No I did not! You know, I did what I had to do, and his input is in it also. You’re talking, uprooting someone who has been here, he’s been here longer than I have, since ’74, but I’ve only been here seventeen years, and to uproot him and move him is not because we’re trying to get away from any, you know, distractions. But it is, the need is there, we have to consider doing this.

While Tamara sensed the disapproval of others who felt she was taking Edward away from them, she herself would be forfeiting much with this move as well. For one, the new townhouse would not only be smaller and more generic than their current, custom-built home, it would also be located in a retirement community, even though Tamara was only in her forties. But even more, Tamara explained that their relocation would entail moving away from the city where her twelve-year-old son also lived. Until this move, Tamara and his father had shared physical custody. With Tamara’s move, her son would begin living with his father full-time in order to stay in his home community and not have to change schools. Tamara felt that transplantation is a commitment so great that their move was justified, an understandable conclusion in light of the fact that Edward (and Tamara, if she became his living donor) would be discharged from the

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hospital long before having fully recovered from the surgery. They also must anticipate possible emergencies if posttransplant complications should arise; in any case, they would require multiple outpatient follow-up visits, all warranting the relocation. But in the process, Tamara also would be resituating fundamental aspects of her relationship with her son, particularly their proximity and the time they would be able to spend together. They no longer would share as regularly in the physical presence of each other’s day-to-day lived experiences. While notable changes in family life would accompany any move to Metrotown, even when parents and children moved together (as I further demonstrate in chapter 7), Tamara’s relocation over an hour away from her son was a heavy sacrifice. When I asked if this will be difficult for her, Tamara acknowledged that the move would, of course, be difficult. But she then fell back on a phrase repeatedly used among those I met who were dealing with hardship: “You just do what you have to do.” This language of pragmatism indexed a common decentering of “choice” in transplantation, foregrounding instead a reckoning of obligation. This is one area where a wide view on transplantation illuminates the significance of patients’ and caregivers’ navigations, stretching well beyond the procedure itself. My focus thus far has been on patients’ attempts— often with loved ones’ support—to become transplant candidates and eventual recipients, but there are even more longstanding obligations and moral orientations that can set patients on a path toward transplant, well before their first clinical evaluation.

Chapter 2

Troubled Relations and Former Lives

Patients and loved ones come to “need” and hope for a transplant via multiple routes. For example, an acute medical episode or a traumatic event can abruptly thrust a person with few or no health problems suddenly onto this path. This was the case for Mary, whom I introduced in the prologue. Another patient needed a small bowel transplant after sustaining internal injuries in a motorcycle crash. For others, the potential to lose an organ’s capacity to function might have long loomed on the horizon, as it had for Cameron (see chapter 1). But for still others, the road toward transplantation seemed to emerge out of tragic, perilous conditions that might well have been prevented under a more just, equitable, safe, and caring social context. Throughout fieldwork, many people shared their stories with me. Across the spectrum of experiences, these rich and multifaceted illness narratives (Kleinman 1988) consistently revealed just how permeable the boundary is between clinical domains and the rest of daily life. These narratives—or “personal fables,” to borrow from moral philosopher Iris Murdoch (1998a)— powerfully illustrated that participants’ trajectories did not begin and end with their direct dealings with the world of transplant, nor could the intermingling of home life and medical care be parsed from larger historical life narratives. Personal fables, as Murdoch (1998a) observed, also offer “moral inspiration,” and in telling the fables participants opened a window into their own understandings of the good and the bad, the right and the wrong, of how they got to where they now were. In listening, I came to more deeply appreciate that patients and their loved ones were making their way in a landscape of entanglements, bent according to the magnitude, force, and complexity of

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moral relations with others over time. More specifically, participants’ narratives were often stories about relations of care. By focusing on two patients’ moral accounts of what led to their eventual path toward and through transplantation I consider early steps in the transplant process from a slightly different perspective. Underscoring these deeper personal histories, I build upon the observation that participants come to organ transfer bearing a lifetime lived in various permutations of caring-related circumstances. Beyond organs, then, transplantation operates on life experiences of care and its absence. Though I privilege here participants’ own relaying of their personal fables, which orient toward the interpersonal, I also veer toward the larger troubling and uncaring social contexts, which form the contours along which these fables unfold. Grace: There Was No Love

It had been some time since our last visit, but there finally came a day when I was able to stop by to see Grace again in her hospital room. When I first walked in the room, I saw only Kevin, seated near the privacy curtain, and thought he was there alone. We talked for a bit and before long, we turned to the topic of how Grace had been doing lately. They were now going to relist her for a second small bowel transplant because the first one, he said, had failed. As we kept talking, I heard someone speak from the far side of the room, and, as I looked past the half-drawn curtain, there was Grace, sitting in the chair by the window, illuminated by the gray-white light of the wintery day, with the hospital tray pulled over to her. She was drawing something on a piece of paper with colored pencils; when I asked if I could see what she was working on, she said, “Well, it’s not very good, it’s not my best.” But she finished a couple of strokes and set aside her pencil anyway. She slowly tipped the paper toward me to reveal an exquisite colorful drawing of a girl’s name, embellished with flowers and other vibrant details. Grace said she was drawing a card to send to her granddaughter who lived back home and trying to encourage her granddaughter to write back. The thousand-mile distance from the couple’s children and grandchildren seemed farther around the holidays. I asked if she was still having a lot of pain, and she said it wasn’t as bad as before, still a nagging, persistent, lower-level pain. Kevin told me she’d gone in for surgery over Thanksgiving; they had to open her up and do a “wash-out” (literally entailing the washing out her internal body cavity and organs) because she was full of infection, and that had helped somewhat. Now they were just planning to stay here to wait and hope for another transplant to become available. After talking for a little while longer, I began to gather up my things to get



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ready to leave. As I started walking out of the room, Kevin stopped me and said he did have a question: did I have any experience with using an online video phone? He wanted to get cameras for the kids for Christmas so they could keep in touch that way, but he wondered if I knew whether they worked very well. Although Grace and Kevin passed day after day in and around the Transplant Center, their paths, stretching from a very different place, meshed with children and grandchildren to whom they wanted to remain close. While Grace continued the “kin work” of sending cards, once described by Micaela di Leonardo (1987) as gendered labor largely performed by women, Kevin had assumed these responsibilities as well with his efforts to connect with loved ones back home by live video.1 Over the years, however, not all of their entanglements with kin had been either loving or mutually supportive. Some, as I had learned in an earlier conversation with the couple (and will recount below), had long been snarls of caustic strain and deprivation, particularly for Grace. These more fraught relations likewise had turned on cultural values linking gender with the nurturing of kin ties. As the couple wove together a vivid narrative, bit by bit they resurrected moments from a past in which Grace in fact felt no nurturance from either her mother or her father. Phenomenologist Edward Casey has argued that memory and place are intimately related, and that this relationship is realized through both lived bodily experience and through material things (1987, 205).2 Grace’s story became an act of remembering the interweaving of body and home life in the space of the domicile over time. Bringing to life Casey’s assertion that “houses hold memories” (1987, 211), her narrative powerfully returned to the place of her childhood home and her living memories within it. It also poignantly underscored the ambivalent side of kin relations (Peletz 2001) by demonstrating how ties can be both destructive and emancipatory. Her story invokes the contours of moral concerns surrounding the obligations of kinship and plays on the dilemmas that grow out of commitments left unfulfilled. Each in their early fifties, and aside from the time they had spent at the Transplant Center, both Grace, who was white, and Kevin, a self-described Cajun whose ancestors spanned several social-racial categories, had lived their entire lives residing in a US Gulf Coast state. When I met them in late 2008, they had just celebrated their thirty-fifth wedding anniversary. Foreshadowing what they were about to share with me, I learned that the position of their anniversary date on the calendar year was hardly arbitrary. Any of the thirteen children in Grace’s large Catholic family of origin who wanted to get married was required to do so on Thanksgiving, she explained, because her parents reasoned that they would be fixing a large meal anyway. A wedding feast would be

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less burdensome at this time because it simply involved preparing a bit more food than they already planned. In fact, both Grace and Kevin made it clear that there had been no tenderness shown to Grace by her parents, who prioritized work, austerity, and pragmatism above affection, especially when it came to interacting with Grace and the older siblings in her family. Grace was among this older group of children, but, in contrast to her siblings, she had been a child who spoke her mind. Though she also tried very hard to win her parents’ approval, she was often in trouble with them. Punishment, Grace recalled, was quite a corporeal matter and could include anything, even pulling hair and “throwing my head up against the brick wall.” Describing her early years, she said at first “life seemed pretty cool, except Mom kept bringing kids home.” It came to a point where the family converted even their dining room into a bedroom, and each older child was put in charge of one or more younger siblings as a designated keeper and bedmate. There was a lot a lot of pressure on me to make sure that these kids were bathed and fed, lined up after the tub, put them on the couch in their little tighty whities and their little t-shirts. And they didn’t breathe until we got ’em their dinner. And then they ate, and we would eat what would be left over, what was there, what the little ones didn’t eat. But my parents a lot of times would get up in the night and my dad would cook them steak and it would just infuriate me because I thought, we get to smell, but we don’t get to taste it. It was a strange, um, very difficult upbringing.

As the family grew, the spatial use of the house, the things within it,3 the daily and weekly bodily and sensory rhythms of feeding, bathing, and housekeeping, and the roles and relations of family members all became increasingly distorted. As the parameters of daily family life changed, Grace and her older siblings began to eat last, allowed only what was left after others had had their fill. Eventually, she was allowed to smell but not taste the steak her dad would surreptitiously cook at night instead of during regular meal times, when hungry older siblings might have vied for a share. Later in life, Grace developed severe ulcers, and, in a particularly cruel twist of her life narrative, in one of several surgical attempts to address the ulcers and related health complications Grace’s stomach was removed; then she was unable to eat altogether. By Kevin’s count, she’d had fourteen abdominal surgeries by the late 1990s. Still, pointing to the past, and particularly citing abuses by Grace’s parents, both Grace and Kevin shared a unified perspective on the origins of Grace’s illness and transplant: Grace’s childhood home



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environment over time became toxic to her health. Playing a major role were her parents, particularly a mother who broke gendered codes of nurturance (Ginsburg 1998 [1989]) by offering no love and leaning on the older children to fulfill the duties of housework and childrearing.4 Kevin: Basically, in a nutshell, her mom was not a mom. She was a queen bee. And she ran the hive, and everybody catered to her, including dad. And everybody was at her beck and call. I can speak this because I’ve been in the family long enough and I know all the particulars. And it just worked out that way, just the way the family were brought up. Everybody was raised that way. Three generations, they had three generations of kids. They had the oldest ones, they had the middle ones, and they had the babies. When we got married, Grace’s bedmate was an eighteen-month-old boy. Grace was having to raise that child. When we left home, it was the next sister in line to take care of him. [ . . . ] And there was abuse on their side, but it was child abuse. They were abusing the children. Grace: Just mental, you know, “You can’t do it right,” slap you around, that you’d go to jail for, now. Grace continued, “Basically, I was raised with a lot of stress. And ulcers. And it’s impacted my whole life.” Kevin agreed, “That was the main cause. She had ulcers that just couldn’t heal.” At this point, the couple noted that medications were available at the time that could have ameliorated Grace’s ulcers, but, she explained, “My insurance wouldn’t pay for it, and we couldn’t afford it.” “They were experimental at the time,” Kevin added. Grace went on, And had I had that, I probably wouldn’t have lost my stomach to the ulcers. They would have been able to heal. But the main ulcer wouldn’t heal, and I kept bleeding out and they’d find me different places, you know, passed out. And I know my body really well, and I knew something was going on. But when I’d have loss of blood, I couldn’t tell, because I was dizzy all the time and tired anyway, so I didn’t know if that was a sign or if it would pass. And people would find me and bring me to the hospital.

It is relevant that around the time Grace became increasingly ill, Kevin lost his job when a larger corporation bought the one he had been working for and downsized their labor force. Money, at the time, already was tight. Grace

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and Kevin briefly mentioned the failures of insurance and a health system that blocked access to drugs that might have made a difference, but this did not loom large in their story. Although they present her persistent ulcers as the direct cause of her needing a transplant, from their perspective the lifelong strain of bad relations was the overarching problem. Kevin continued, drawing connections between Grace’s upbringing and its translation into her life as an adult: And it was too much put on a young person, the responsibilities that the parents should have been responsible for, not a child raising a child. And Grace being A-typical, wanting to please everybody, stuff like that. That’s where all of these ulcers come in. That, in a nutshell, is her character, and she wanting to please everybody and this and that. And with A-typical personality, just going and going. Throughout her life. She was always, if it wasn’t our kids, it was another child or something like that, always a mothering figure. Good and bad, you know, good and bad, to worry about everything. And she did worry about everything.

Moral philosopher Charles Taylor offers a helpful framework for further understanding the couple’s insistence on the interpersonal origins of Grace’s illness. Insisting that we develop our moral orientations as persons in relation to others over time (e.g., from childhood through adulthood), Taylor notes, So I can only learn what anger, love, anxiety, the aspiration to wholeness, etc. are through my and others’ experiences of these being objects for us, in some common space. [ . . . ] I am a self only in relation to certain interlocutors: in one way in relation to those conversation partners who were essential to my achieving self-definition; in another in relation to those who are now crucial to my continuing grasp of language of selfunderstanding—and, of course, these classes may overlap. (1989, 35–36)

There is an “essential link,” Taylor argues, between identity (knowing who you are) and an orientation in “moral space,” where “questions arise about what it good or bad, what is worth doing and what not, what has meaning and importance for you and what is trivial and secondary” (1989, 28). It is important that this orientation in moral space is shaped as an artifact of history, both interpersonal and macrosocial. In his remarks Kevin ascribed to Grace her personal ownership of these traits, yet he also linked them to the environment of her upbringing by expressing an underlying ambivalence about Grace’s own ways of practicing kinship. Grace, as “a mothering figure,” had much to offer her own family of procreation. Almost as a purposeful counter to her own upbringing, Grace was very



Troubled Relations and Former Lives 45

loving toward her children and grandchildren. Grace’s “A-typical personality” (i.e., “Type A” personality) and tendency to worry, however, were also problematic. The couple described together some examples of how these two sides became manifest in daily life: Grace built a successful wedding photography business, which provided much-needed income for the family. Yet she also often took it upon herself to maintain and carry an “emergency bag” of supplies so that she had everything from safety pins and tissues to an extra bouquet and rings on hand to cover up the inevitable wedding-day omissions and mishaps. She sewed by hand beautiful and elaborate outfits for her children, only to rip out the seams and start all over if she detected a flaw in her craftsmanship. The couple’s moral orientation to Grace’s illness narrative also grew out of divisions along lines of social race, ethnicity, and language in the context of the US South. Grace’s parents had expressed their disappointment in her choice of Kevin as a partner and husband. Kevin noted, “This was in the early ’70’s. I was a drummer [in a band]. I spoke my own mind, I was free-spirited and I was not going to be controlled and I wasn’t told what to do and I had my own mind.” Kevin’s family could speak French, and French was spoken in his home. In Grace’s parents’ view, this placed his family in a lower social stratum. Moreover, Grace said, Kevin’s mother “was Spanish,” and “[she] could probably pass for African American. And they [my parents] found out what she looked like and immediately started calling him ‘mulot’ which means ‘half black,’ and all those things were just really hard to swallow. You try to keep your pride and your dignity and respect for your parents and not to rock the boat, but it wasn’t getting any better.” Grace’s parents exerted even more pressure on the young couple when they had their first child, a daughter, who had a food allergy that caused her to lose weight in her early months. In another caustic twist, Grace’s parents, who themselves had withheld nurturance not only of emotion but also of food when she was a child, accused Grace of not nurturing her own infant. “My family thought that we were starving her and so they tried to take her away from us. And so one stormy night, he [Kevin] came home and I was in my fetal position on the floor in the dark holding my baby, saying ‘You gotta get me outta here. I’m having a nervous breakdown.’ Just too much stress.” The couple moved away to another city in the same state, where they made their lives and had only minimal contact with Grace’s parents for several years. In fact, not until Grace’s condition became so severe that her small bowel no longer functioned did her parents finally come forward and make an effort to reconcile, albeit in their own way and far too late. Kevin described the gist of a monumental conversation Grace’s parents had with him during one of her hospitalizations: “They were very sorry, were

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very thankful that I’d stayed with her and taken care of her, that they were wrong about me. But it took them too many years to realize it.” Contrary to her parents’ assumptions, informed by racism and the idea that a man could be expected to leave his wife under these circumstances, Kevin worked to secure a job where he could take leave as needed, enabling him to care for her through the depths of her illness. Grace then added that, after her parents apologized to Kevin during this conversation at the local hospital, when she had been admitted to the transplant waiting list, her parents came to their house to visit. This time, they acknowledged their realization that he had not been able to work steadily for some time. Grace said, “They finally realized, if he was with me, he was not working. So they came and gave us some money so that when we took the phone call [that a transplantable small bowel had become available] we had some money. And that day they gave us a thousand dollars. And that was the first time in their life they ever said that they loved me.” At this point in our conversation, Grace had to pause for a moment as the emotions welled up. Grace: But it was too late. Kevin (continuing for her): Yep, it was just too late. They were not emotional type people. They didn’t show their love or anything like that. It was too disciplined of an atmosphere at the house, with no love shown or anything. Grace: They didn’t know how. Kevin: Yeah, they weren’t taught how. [ . . . ] Grace: They wouldn’t talk about it. They would laugh about it: they were fourteen and fifteen when they got married. It took them almost two months to consummate their marriage and they were just very young, and they had no idea, you know, of what parenting or whatever . . . The first time in Grace’s life that her parents verbally expressed their love to her, they accompanied the moment by giving the couple a sum of money. How might this coupling of love and resources cast new light on the parentdaughter relationship from Grace’s childhood?5 It went without comment that Grace’s childhood hunger and mistreatment might have been situated in a context of scarcity, not only in love, but also in resources. The money, though of some practical help in the logistical preparations for Grace’s hoped-for transplant, was not important only in itself. Much more to Grace and Kevin, this gesture signified a tentative and still-nascent caring realization of the tremendous challenges the couple had been tackling. While her parents’ expression of love



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was indeed an affecting, unprecedented moment in Grace’s life and a source of deep emotionality for her, it could not erase interpersonal history. The gesture came too late to undo what she and Kevin felt was the true underlying cause of Grace’s physical condition. Both Grace and Kevin insisted, though, that they had forgiven her parents. Both of them pointed to generational differences as an exculpating circumstance, and this was the route by which they removed some personalized blame from the picture and linked Grace’s suffering to her parents’ own historical narrative, which included marriage at a very young age and a lack of guidance about how to parent (or, more important, how to love). Even when love is not sustained in practice, the couple’s forgiveness demonstrates tenacity in the ideal that love and kinship ought to go together. In Grace and Kevin’s moral narrative, this fragile connection between love and relatedness is key to the total breakdown and then tenuous reconstruction of “the good” (see Murdoch 1998b). Grace and Kevin qualify their story by pointing out that Grace’s parents were not inherently bad persons and that their dispositions were not born out of conscious choices (Murdoch 1998a) to be a certain way. Kevin said, “I forgave them a long time ago because they were just, I don’t know the proper word, they just missed the mark on trying to raise their kids better. That lifestyle was unknown to me. The queen bee was the queen bee and that’s how it was until she passed two years ago. She died while Grace was here, in January of ’06.” Grace’s suffering thus was situated within a set of overlapping, interlinked spheres of context and interpersonal narrative. Grace was not simply a transplant recipient (and now again, a transplant hopeful), but a moral wayfarer who had come into being thoroughly in relation to others. Transplantation plays a relevant role, but it is not in every way the leading figure. It becomes both a consequence of relations gone awry and a source of redemption, recast as a catalyst for reconciliation and increased (if still partial) mutual understanding. In the personal fable told by Kevin and Grace, her dealings with transplantation emerged out of the moral obligations—and their failures—of kinship, care, and nurturance and became a means by which persons could practice shared values about what kin ought to do and who kin ought to be in relation to one another. Emily: My Daughter Saved My Life

Patients and loved ones in other ways made clear that transplantation is interwoven with personal moral historical narratives—lines of wayfaring—that extend well into the past and come together in the present meshwork of daily life. Emily (introduced in chapter 1) shared her story with me in a way that

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likewise poignantly demonstrated the significance of relations with others, whom Annemarie Mol (2008, 59) has described as one’s “hidden company” in clinical encounters, as putting one on a path to and through transplantation. At the time we first became acquainted, Emily had not yet been placed on a waiting list for a kidney and pancreas transplant. Upon her request, we met for our initial extended conversation at a café, where she and I sat and talked while her mother entertained Emily’s young daughter at another booth. Emily had both a commonsense eloquence and a straightforward frankness about her, and she began her story quite simply, “I actually got my kidney failure due to complications when I was pregnant with my baby.” And yet, as her narrative unfolded (like many, Emily described events in nonchronological order), she outlined a series of details that created a complex picture. In truth, several threads of her life story came together to eventually lead to her current path, and she proceeded to attribute her decline to factors beyond the pregnancy. Among these, she blamed herself, for not seeking medical help earlier, for tolerating too much—indeed for being a person who habitually used to tolerate too much. Not long after returning to work following a year-long maternity leave, Emily became very ill: I was just constantly throwing up. I couldn’t keep food down. And I was just, more than usual, exhausted. Like literally, I couldn’t even, as much as I wanted to, spend time with my daughter and when I would get off work I would just literally pass out. I just didn’t have the energy anymore and I knew something was wrong. I was just like, maybe it will pass, maybe it will pass, until one day at work, I just could not stop [vomiting] and [could not] keep anything down, not even fluids. So they sent me home. My mom was worried about it; she took me to the doctor and the doctor and a nurse looked at me. And they knew that there was something wrong because they were like, how long has she been like this? And I told them, for about a month now. And they were like, why didn’t you come in before that? And this is my problem: I’m so tolerant of things like that, that I don’t want to be the crybaby, the one that goes crying every time something happens. And so I just take it and I take it until . . . I know now; now I don’t do that anymore because I know that had I gone to the doctor earlier or something like that maybe it wouldn’t have gotten to that point. I don’t know, but I still have that thinking in my head, you know that I shouldn’t let that kind of stuff affect me that way.



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She outlined the several different tests she underwent, hearing from the nephrologist that her kidney function had decreased to the point where they needed to begin preparing for dialysis and the process of putting a fistula in Emily’s arm (see chapter 1). Her condition then declined so quickly that she had to return to the hospital before her fistula had fully healed. A central line was placed in her chest, and she began dialysis immediately. But, then, Emily began to fill in the back-story, the more encompassing details of her “personal fable,” which placed the more immediate story of coming to transplant in a much broader context. By the time she came to need dialysis and a transplant, Emily said, she already had begun to make “some really drastic changes” in her life regarding her health. These changes were prompted by an episode three years earlier, when she, in her words, “had a very rude awakening.” I got really sick, and I had a pneumonia to where my lungs collapsed. They had to put chest tubes in me and I was in a coma for a month. When I woke up from that coma and I realized what day it was, [ . . . ] I realized what had happened [and] I started crying and I started seeing what life is and I said, “I can’t do this!” And after I saw all of the people that it affected and how I affected them, I felt terrible about it, you know? Because I hurt my mother and my brother and me. . . . And the doctors, they told my mom that “She is not going to live.” And after I heard all of this and they were telling me what I looked like in the state that I was in, and not to mention all of the unpleasant things that I heard that went on while I was in the coma, I realized I never ever, ever want to do that again to myself or to anybody else that I love. [ . . . ] It was really difficult for me because I had to go to rehab to walk again. I had to learn how to swallow, because they had intubated me. It was just a long process, and I couldn’t believe that I did that to myself. So I separated myself from that scene. And then before I knew it, you know, things started going okay.

Years before this episode, at age eighteen, she had been diagnosed with Type 2 diabetes and was prescribed oral medication to control her blood sugars. But Emily saw almost no improvement in her symptoms, and within a year she was hospitalized with her first episode of ketoacidosis. As an inpatient, she came under the care of an endocrinologist, who recognized that she had been misdiagnosed. “You should have been insulin-dependent to begin with,” she recalled him telling her, “you’re not a Type 2 diabetic, you’re a Type 1 diabetic,” and probably had been long before turning eighteen. She said to him, “That would explain a lot of things.” From the time she was little, she was always thirsty and would

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often “pass out” unexpectedly. “Everyone would laugh about it and say, ‘There goes Emily, she’s asleep again!’” But Emily hardly factored this misdiagnosis into her more general path to transplant and pointed instead to her own personal lifestyle, and the people she had been spending her time with: Before that I led a very fast, you know, I was a little party girl, always getting into things that I shouldn’t be getting into and doing stuff that I shouldn’t have been doing. And I never, in fact, I didn’t care about my diabetes. I never took care of myself. I didn’t care about anything. I was just very nonchalant about what all the people who were close to me would think. You know like illicit drugs and stuff like that, I would just take it. I didn’t care. My thinking back then was: I wanted to experience the huge whatever was out there.

In a later interview, I also learned that the scene from which Emily eventually separated herself had included ties to a former boyfriend who had been verbally, emotionally, and physically abusive to her. Before later meeting the man who would eventually become her husband, Emily had been in this violent relationship for seven years, during which she had endured beating, strangling, and other forms of brutality, including repeated threats that her partner was contemplating a murder-suicide. Initially, this boyfriend ended the relationship with Emily, but when she tried to move on he began breaking into her apartment, terrorizing both her and anyone she might be dating at the time. Emily found that she could not extract herself from her entanglement with just one person; to disentangle her path from his, she had to withdraw her myriad points of connection with his entire web of relations. She explained, The thing that finally severed us for good was, I ended up cutting my ties with the people that he also knew. That was a problem every time. I would tell the people that we had in common my new number or where I was living and stuff. Well he would get it out of them, because he also happened to be a source of whatever it is that they needed. [ . . . ] And then also I had a long heart-to-heart with his mom and I told her [ . . . ], “You know, I loved him for seven years. I tried and tried my best to make this work, but he’s too violent. Not only physically but verbally. He is constantly getting into trouble and I don’t have the strength to take care of him and get him out of trouble every time it happens, because I didn’t give birth to him.” I said, “You need to talk to him and you need to tell him to stay away.” And after that heart-to-heart with his mom, she finally came over and got him. And I never heard from him again.



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Emily included meeting and marrying the man who was now her husband as a positive life change she had already made by the time she fell so gravely ill. Despite these new directions, and after being married only a short while, her hospitalization for pneumonia began to clarify the magnitude of her health problems. Following a long recovery, Emily eventually went back to work, kept her blood sugars under better control, and, much to her surprise and delight, became pregnant. Because she and her husband had taken no measures to prevent pregnancy for the [by then] two years they had been together without conceiving, she had “just assumed something was wrong” and that she could not conceive. She considered the discovery of her pregnancy a defining moment in her life. Though she had been “taking better care of herself” already, up until this moment, she had felt that there was still a chance she could be persuaded to return to her old lifestyle. “That completely changed. It went out completely, once I found out I was pregnant. When I found I was pregnant, I just severed everything absolutely to where I had no contact with the people that do certain stuff like that.” At her second ultrasound appointment, she and her husband learned that they would be having a girl. “And then, from that point on everything that I did, I was very particular about what I ate, how I was taking care of myself, and I was doing everything that I was supposed to.” But only a few weeks later, it became apparent that Emily’s kidneys, already taxed by previous years of poorly controlled glucose levels, were not faring well during the pregnancy. She was hospitalized at twenty-nine weeks gestation when she began to retain large amounts of fluid in her body, including her lungs. Not long after, Emily was given an injection that would hasten the development of her daughter’s lungs in utero, and at thirty-one weeks gestation Emily’s daughter was born: “She weighed two pounds. I still remember her little cry and then the doctor saying, ‘She’s biting me!’ And I was all, ‘That’s my girl!’ Yeah, I was very excited.” But another series of medical complications emerged. While her premature daughter remained in the neonatal intensive care unit (NICU), Emily was discharged to home, still rather bloated from the water she had retained during her pregnancy. Contrary to her doctors’ expectations, though, even after three and a half weeks, she was not shedding the excess fluid. One day, Emily began to have difficulty breathing. “After I had gotten home from there [the NICU], I was sitting at home by myself. And all of a sudden, I started feeling the shortness of breath. I mean, it was crazy and I’m just sitting here not doing anything. Why am I running out of breath? And then all of a sudden, I told my husband, I go, ‘There, something’s not right!’ [ . . . ] And so he was concerned about it too, so he took me to the emergency room.” The day before, Emily had been in for

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a check-up visit and follow-up chest x-rays, and by the time she came to the emergency room, the results from the previous visit had come in. The x-rays indicated that Emily’s lungs “were completely flooded with fluid,” and the specialist ordered immediate aggressive treatment with diuretics. Emily laughed as she told me that she lost thirty pounds and went down six clothing sizes in one night as the fluid left her body as urine. This part of her story prompted Emily to describe body ideals that also were factors previously figuring prominently in her reluctance to control her blood sugar. One of the reasons why I did not take care of my diabetes was because I was afraid of gaining weight and I knew that me taking my medications, and you know being a good diabetic was one of the reasons why I would go back to like, I wasn’t majorly overweight, but  .  .  . like when I got sick [with pneumonia], I weighed ninety-eight pounds. And that’s how I liked it. I liked being that small. . . . Everyone was like, “Emily, you don’t look healthy.” But I didn’t see that. Honestly, what I saw was a big overweight person, which is why I never wanted to take my medicine, you know, to take care of myself because, I didn’t want to see that overweight person. I wanted to be that skinny person that I had seen.

Overall, Emily credits the birth of her daughter as the moral tipping point in her life’s path: “I also think a lot of it had to do with the fact that the stuff that I was doing before had an effect on me; I mean, it was just a really bad life that I was living before. And so my daughter, honestly, I think she saved my life. Even though it put stress on my kidneys. She saved me and I am doing so much better now.” Layered Etiologies and Multiple “Beginnings”

Where do the beginnings of Emily’s movement toward transplantation lie? Her kidneys, already damaged by diabetes, might have been further strained by her pregnancy, but this same pregnancy gave Emily her daughter and reinforced the distance she had put between her current path and her former life. It facilitated a more permanent release from the destructive relations that could pull her back down. Emily gives credit to her daughter for the fact that she is “doing so much better now,” but she takes personal responsibility for her past blunders: she made bad choices, she partied too much, she purposefully didn’t take her medication because she wanted to be skinny. She didn’t take care of herself. She didn’t care. In these and other respects, she assumed personal moral culpability for her state of health—her pneumonia and coma were devastating because of what it did to her loved ones.



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And yet, given the time and space to further describe her personal fable, we can begin to see Emily’s organ failure as an embodiment of forces beyond her individual agency. One crucial factor was that she long had lacked access to appropriate treatment. Although she had exhibited symptoms from the time she was a child, her diabetes had gone undetected. Then, she had been misdiagnosed with Type 2 diabetes, and her blood sugars remained uncontrolled, wreaking continued havoc on her kidneys. Further adding to her barriers to appropriate care was a milieu of social complexities in her daily life. Emily was trapped in an abusive relationship for seven years, held hostage not only by her boyfriend, but by the entire web of relations into which her path had become woven. Her home life with him was permeated with violence, danger, and fear; even after he moved out, he might invade at any moment. It also was evident that Emily was in a relation of obligation with his mother; leaving her boyfriend also had necessarily involved others in his immediate family. Though she eventually did receive an accurate diagnosis of Type 1 diabetes, ideals about body shape and size, which also are powerfully gendered, posed another barrier. With great consequence, they informed Emily’s interpretation of her physical image when her blood sugar was controlled, versus when it was not. Emily’s eventual route to transplant was comprised of myriad, long interwoven threads. There are parallels to be found between Emily and Grace. Taken together, their narratives insist upon an understanding of patients as whole persons, each with a past that has everything to do with his or her current medical status, yet these pasts also encompass much more than immediate dealings with transplantation. Both narratives move between the layers of medical explanations (Emily’s diabetes and pregnancy and Grace’s ulcers) and personal responsibility (Emily’s prior lifestyle and Grace’s “type-A” personality and character). Like many patients and loved ones I met, however, when given the opportunity, they both described the “need” for a transplant as arising in the historical narrative context of relations with others that are troubled by an absence of care where it should be abundant. Grace’s parents and childhood homelife, rather than providing love and sustenance, instead provided tremendous stress and deprivation. Emily’s former boyfriend and social scene, rather than offering affirmation and supportive friendship, instead brought angst, peril, and ruin. Likewise, in both instances, caring relations made possible a passage out of toxic pasts, while also facilitating a move toward transplantation. Grace left her home when she married Kevin, and Kevin remained a caring partner through all of her dealings with and through illness and transplantation. Conversely, Emily changed directions from her then-calamitous path, out of care for her

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loved ones who had been devastated by her hospitalization and near-death from pneumonia. Out of care for her daughter, Emily reinforced her commitment to improved health and kinship obligations continued to animate Emily’s pursuit of a transplant. Together, “personal fables” outline in bold some of the ways in which interpersonal care relations intertwine with bodily states in ways that lead persons to eventually “become” transplant patients, via paths that are alternately characterized by tragedy and redemption. They further underscore that relations, with all of their upshots in the area of health, are constituted in the moral dimensions of social life. Returning specifically to Grace’s lived historical narrative, by cooking steak at night for the younger siblings but keeping this food from the older siblings, Grace’s father voided well-trodden moral expectations in the United States that parents serve as loving providers to their children, without exception. But one wonders, too, at the structural conditions that might have shaped the overall lack of food to be had in Grace’s family. It is especially notable, given that Grace’s grave condition also likely involved an unaddressed Helicobacter pylori (or H. pylori) infection of her gastrointestinal tract which, as mounting evidence suggests, is associated with childhood poverty (Khalifa, Sharaf, and Aziz 2010; Malcolm et al. 2004) and malnourishment. The precarious financial status that almost certainly would have loomed large over a working-class family of thirteen children did not factor greatly into the personal fable Grace and Kevin shared with me. Furthermore, she and Kevin made only passing mention that their financial instability as a married couple, along with their poor health insurance coverage, prevented them from being able to access the drugs that could have offered medical healing to Grace. Overall, they linked Grace’s small bowel transplant more directly to her kin relationships and early family and home life; they attributed it to stomach ulcers caused by a lifetime of too much stress. Iris Murdoch points to “the importance of parables and stories as moral guides” (1998a, 90), noting, “Certain parables or stories undoubtedly owe their power to the fact that they incarnate a moral truth which is paradoxical, infinitely suggestive and open to continual reinterpretations” (Murdoch 1998a, 91). Together, Grace’s and Emily’s narratives served as “moral etiologies”— explanations involving failures to uphold the expected and culturally “given” associations between kinship, love, and care. They shed light on assumed associations between health and individual self-care. The magnitude of the very real personal and interpersonal suffering endured by Grace and Emily cannot be overstated, and I in no way intend to diminish their emic perspectives on the paths that brought them to where they were when I asked them to reflect



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on these matters. Yet, as moral tales open to reinterpretation, I suggest that the personal and interpersonal dimensions of Grace’s, Emily’s, and others’ stories also are powerfully shaped by larger structural inequalities. Furthermore, while social injustices can shape access to transplantation, often making the difference between having or lacking the resources to actually comply with the pre-transplant requirements (described in chapter 1), social injustices can likewise set persons on an initial path toward needing a transplant. This, too, is a moral issue, even if my interlocutors rarely articulated it as such.

Chapter 3

Precarity and Policy

Zoe was in her mid-forties, white, and a single mother of four children, three of whom currently lived with her in a small town a few hours away from the Transplant Center. She spoke proudly of all of them, from her oldest son, who was about to enter the navy, down to her youngest, her only daughter, who was in second grade. “My friends keep telling me guys like me,” she said, “but I don’t care; my kids are my main focus.” Large tattoos covered her arms. She was at once earnest and tough as nails. Quick to befriend, Zoe was also unafraid to call things exactly the way she saw them. She was unabashedly candid about the troubles she had encountered in life, yet she was protective of the details. She had received a liver transplant the previous spring but had been called back to Metrotown for some follow-up testing. The results of recent lab work, performed routinely now at her small hometown clinic and sent to the Transplant Center, prompted the transplant team to arrange to see her in person for a more thorough assessment that would span at least two days. During this stay I met and spoke with her. Zoe told me that she didn’t really have a job and that her main source of income was through SSI (Supplemental Security Income), a federal program for persons with little or no other earnings and who are aged sixty-five and older, blind, or disabled. But, she said, “It’s not enough to live on, not at all,” so she supplements her income informally, adding, “[I do] stuff that I get a little money out of.” She had earned her GED in the nineties and had worked mostly in food services, but she was forced to quit her job when she was diagnosed with hepatitis C. It is worth noting that her employer had not provided health insurance, and, by the time she was diagnosed, she was already very ill. Her

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health care costs now are largely covered through the state’s Medicaid program, “Otherwise I’d never be able to make it. I don’t know how I’ll ever get a real job that takes taxes and stuff because nobody’s gonna insure me, you know?” At the time of my fieldwork, before passage of the Affordable Care Act (ACA) and when preexisting conditions clauses in health insurance policies still regularly made it all but impossible to find private health insurance following a transplant, Zoe’s current Medicaid coverage was a lifeline that she was not free to let go, even if she’d wanted to. And obtaining this coverage in the first place was a hard-won achievement. In their 2006 work, Poor Families in America’s Health Care Crisis, Ronald Angel, Laura Lein, and Jane Henrici emphasize “the impact of instability . . . on all aspects of poor families’ lives,” along with “the role of poor health and the lack of health care coverage in exacerbating that instability” (2006, 26–27). Across the economic spectrum, policy greatly affects the lives of transplant patients and those closest to them, but it can have a particular propensity to reflect and reinforce structural inequalities (see Singer and Castro 2004) for persons living at the margins. Under a characteristically disjointed system (Clancy and Danis 2000), US health care is financed through a combination of public (federal, state, and county government) and private (both individual and employer-based) insurance. Such piecemeal organization not only leaves many people vulnerable to falling through its cracks but it can also make it impossible for families to fulfill their obligations to one another (Wilson 2006, 237); and the disjointed nature powerfully shapes the conditions in which personal fables unfold. Even moral etiologies like Grace’s and Emily’s in chapter 2—those deeply interpersonal causal explanations for illness—can be traced to shortcomings in a US social safety net where childhood hunger remains unchecked and lack of access to appropriate medical care and medication often leaves chronic conditions unaddressed. The complex details of Zoe’s narrative demonstrate the profound influence of US social policy on patients’ movement toward and through transplantation. Simply put, Zoe’s need for a transplant was a preventable outgrowth of a tattered safety net (see Angel, Lein, and Henrici 2006) that throws up barriers for those who need a safety net most. Recent reforms brought by the ACA address some of the most egregious barriers Zoe encountered, but the remaining disjointed nature of our system allows many more gaps to fill. One possible reading of Zoe’s story holds her individually responsible for needing a transplant and morally culpable for making poor lifestyle choices. But a closer tracing of her path along the policy frameworks she was navigating sheds light on the larger political-ideological underpinnings of her trajectory,

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which stretch well beyond her personal control. This discrepancy is obvious when contrasted with my story of a second patient, Hank, whose experience and level of support were vastly different than Zoe’s. The juxtaposition of these two cases allows insights into the caveats of a larger moral landscape where local personal responsibility is assumed for both adversity and fortune. This landscape contributes to ongoing shifts in responsibility for health-related care to private individuals, in homes, and with only feeble structural support. Gotta Do Something to Pay Them Bills

Zoe’s home is a second-floor apartment, where space is far from ample; even one of the larger closets must serve as a bedroom. She had been married before but is no longer in touch with her former husband, with whom she’d had her youngest three children. She describes him as a physically abusive drug addict: “He’s festering away someplace. . . . I wish he’d get better, but we ­haven’t seen him since 2003.” His drug of choice was methamphetamine; he already was using meth frequently when she met him, and their relationship was rooted largely in what became a shared drug habit. She told me she ended up using meth for over a decade, too. While her three younger children do continue to live with her, she “got in a bind” some years ago and relinquished custody of her oldest son to his father—a former lover-turned-friend—rather than allow the state to take custody of him. She did not elaborate on the circumstances, but I took this as an indicator of just how profoundly the abuse by her husband, drug use, and living in poverty had all combined to imperil her children’s—and her own—well-being. Her oldest son now lives twelve miles away; they talk on the phone, and she sees him regularly. Zoe greatly values her relationship with his father, who in fact took care of all four children when she had her transplant. “If I wouldn’t have made it,” she said, grateful, “he would have kept them.” When I asked if this had been a possibility, Zoe nodded, “It was real close.” She described how ill she had become while waiting and hoping for a transplant, pointing to the MELD (Model for End Stage Liver Disease) scoring system as playing a role. This key component of liver allocation policy in the United States takes into account a range of physiological variables based on lab values: bilirubin measures the liver’s ability to excrete bile; INR (international normalized ratio) measures the liver’s ability to make some of the factors involved in blood-clotting; and creatinine indicates kidney functioning, which can be compromised with loss of liver function.1 A numerical value, calculated using these measures, becomes the gauge of how urgently a patient needs a liver transplant in order to survive. Under this system, transplantable livers go to matching



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candidates on the local, regional, or nationwide waiting lists who are, by these indicators, closest to death and thus considered in greatest need compared to all others on the list.2 Zoe felt it didn’t make sense that they let people get so sick, “but,” she allowed, “I guess there ­aren’t enough parts.” As she went on to share her experiences with illness and her transplant, Zoe in fact highlighted a much larger network of policies and structures that, in her direct experience, made no sense. While she could come around to the rationale behind the MELD system, there was no justifying the irrationalities of the loosely and irregularly woven social safety net she was required to navigate to this point. Zoe stood out among participants in how explicitly she pointed to systemic failings as placing her on a path toward organ failure and transplantation. She noted, “I think [this state] could have put my transplant off for a while. If I had gotten treatment [for my hepatitis C] when I first needed it, I wouldn’t have had to be approved for SSI [ . . . ], and maybe wouldn’t have needed the transplant for a long time.” Still, like many with whom I spoke, Zoe also readily located etiologies at more individual levels. During her years of methamphetamine use, she said, a friend had hepatitis C, and the two of them sometimes were careless with their needles while injecting meth together. She said she also had been a “heavy drinker” for some years and pointed to the combination of these as the likely reasons why she contracted hepatitis C and developed cirrhosis. Eventually, with the help of her oldest son’s father, she stopped using methamphetamine and cut ties to an entire social network that had kept her entangled with drug use for so many years. He took in Zoe and her younger three children when she left her husband. By this time, she already had been able to tell that her health was declining, yet she could not seek regular medical care because she lacked insurance and could not pay for care out of pocket. When she finally did see a doctor, she was given a diagnosis, but not much else. Even basic information about her treatment options was made inaccessible: I went to a doctor in [a nearby, larger town] because I was tired all time. He said, “Well you have Hep C,” and did a biopsy and found cirrhosis too. So I knew I was sick and that I had to stop working food service because that’s what he told me, but nobody told me, “Oh, well, we can treat you.” Nobody told me that until I got past the point of being able to be treated. So there’s not enough information out there, or they’re not giving it out to enough people. The information’s there but if nobody’s ever told you, it doesn’t do any good. [ . . . ] So I got to the point where there was no hope of treating it.

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With the diagnosis, Zoe was told (erroneously) that she could no longer work at her job in food services because of her hepatitis C,3 not for her own well-being, but to ensure that she wouldn’t spread the virus to patrons. Although given information about her health in the interest of protecting others, she was not adequately informed of her own treatment options. When she tried to seek help through an emaciated system of publicly sponsored programs, at every turn Zoe encountered major obstacles, stacked as an incommensurable combination of work requirements and the accumulating effects of untreated illness, along with other policy-created scarcities. She was further stymied by misunderstandings and poor interactions with social service caseworkers, who were situated as the occupational frontline of a massively underresourced and piecemeal safety net. She emphasized, “I knew I was sick for several years  .  .  . but I couldn’t get [this state] to [cover my health care]. When I filed for SSI in [this state], they said, ‘Oh, you don’t really need that.’” Zoe was expected to work. Health care in the United States is treated not as a right, but as a privilege to be accessed through employment. Retirement health benefits through the federal Medicare program, for example, can only be claimed if one has accrued enough earnings-based Social Security work credits through employers who participate and pay into the Social Security program (or, if selfemployed, consistently paid into the program yourself).4 Outside of reaching retirement age, select criteria likewise can qualify one for Medicare if one has met the work requirements. For example, having End-Stage Renal Disease (ESRD) can automatically qualify a person for coverage under the Medicare ESRD program.5 Because Zoe was not experiencing ESRD, she could not access Medicare coverage via that route.6 Those with other forms of disability, however, might also qualify for coverage. For example, an uninsured individual whose health condition prevents them from working and who has met the work requirements may be granted Medicare coverage under the federal Social Security Disability (SSD) program. The SSD (or SSDI) program also generally provides monthly cash income. The criteria for this, however, are stringent, and as a point of access the program is heavily managed by certain gatekeepers, including physicians. The application process is long and onerous, requiring among other documentation a doctor’s written opinion about a patient’s inability to work. And there are no guaranteed outcomes; an application can be denied for hosts of reasons, sometimes even for simple typographical errors. If a person is granted disability status, then they generally must recertify this status on a regular basis, which requires more paperwork and entails ongoing risk of losing



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coverage. Furthermore, as Zoe found, gatekeepers do not readily acknowledge that an illness prevents one from working. Rather than work through SSD, Zoe tried to seek support through Supplemental Security Income (SSI), which is a means-tested federal program for persons aged sixty-five and older or who are blind or disabled; in most cases SSI is also linked to Medicaid eligibility at the state level. If one qualifies for SSI, one generally also meets the requirements for Medicaid. The state in which Zoe lived was among those that do link determinations of eligibility for Medicaid with the federal Social Security Administration’s eligibility criteria for SSI, but it also requires that persons file a separate application for each program; here, too, at many points the process can break down. Simply put, Zoe’s work and health limitations were turned into obstacles, rather than entry points, for accessing public assistance. She explained her experiences in greater detail, further highlighting the shortcomings of a fractured system: Zoe: I still got stuck with social services people saying you’ve got to be on unemployment first [before you can be eligible for other benefits]. And I’m like, “You don’t get it—when I go to work, I wear myself out, then I get too tired, then I get sick and then I lose the job. Why are you making me be on unemployment first? I don’t understand it.” And they go, “Hep C doesn’t stop you from going to work.” And I go, “Well, ok, whatever. I guess you know what you’re talking about more than I do.” I’m just sick and tired, you know? [ . . . ] I could see things swirling because [of] the job thing. It was like a circle. I used to go out and cut firewood out of farmers’ treelines and stuff, and I’d tell the farmer, “I’ll clean that up for you if you let me keep the wood and sell it.” Laura: So you would chop the firewood? Zoe: Yeah, I knew how to run a chainsaw. Laura: Even when you were sick? Zoe: Yeah, you gotta do something to pay them bills.7 Zoe had been told that securing unemployment benefits was a prerequisite to other claims to public support, and here Zoe’s experiences powerfully critique the linking of coercive work-based welfare policies with access to health care for Americans living in poverty (Angel, Lein, and Henrici 2006, 26–27). Zoe actually was quite willing to work and went to great lengths to provide for not only herself but also her children, even chopping wood out of local farmers’ tree lines to sell for cash when she could. She also in fact had secured other jobs

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for brief periods here and there, but she would become exhausted, miss shifts, and then be let go. Zoe’s health-related work limitations, left unrecognized by the state, stymied her access both to unemployment and to the other forms of assistance tethered to it, including assistance with health insurance. Specifically, in order to receive unemployment, Zoe had to maintain her willingness—aside from her ability to do so—to work at least four days a week, and this willingness had to be regularly reaffirmed through documented attempts to find paid formal employment. Without recognizing her health decline as a legitimate barrier to working, Zoe’s job losses were prone to interpretation as either a “voluntary quit” or a “discharge for ordinary misconduct” (in this case, failure to work as scheduled), both of which were official disqualifiers for unemployment. Furthermore, the state’s law forbids collection on “back-to-back” unemployment claims. Even if Zoe had readily secured unemployment benefits from the beginning, if she found work and stopped claiming unemployment benefits, and then subsequently lost that job (a likely scenario given the effects of her illness), she could only requalify for unemployment under a specific set of conditions: That recent work must have been with an employer who paid into the unemployment insurance program, and she must have yielded earnings of at least six times the amount of the previous weekly unemployment benefit amount since the time her prior unemployment claim had become effective. In addition, the work opportunities available in her small rural community were limited. Zoe eventually was asked to enroll in a state-sponsored work program. Refusing to enroll in the program would be considered a “refusal of work” and would thus disqualify her for unemployment payments. This state program had one more caveat: when it established that there were no more opportunities for paid formal work in her town, she was required to start traveling at regular intervals to the next town to look for jobs. Exhausted and indignant at what she saw as the wastefulness of such a regimen, and in light of what she was asked to do in the program, Zoe began to resist participation. They said, “Oh, we gotta cut you off because da-da-da-da,” and I say, “Because I don’t want to hop in a cab and go to [a larger town several miles away], make you guys dead head two ways, pay for daycare and sit in this stupid little office and get a job over there that I’m gonna have to get toted to?” This is like sixty miles they’re talking about every day and I’m going, “This is ridiculous!” Because there was nothing around my area and they said, “We’ll take you to [the other town] and you can sit there and go make applications in [the other town].” Yeah, sixty miles away! And I’ve got no car at this time because my car had blown up.



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Zoe eventually was able to trade the body of her broken-down vehicle for a car that did run. Cut off from any consistent source of income and still unable to secure medical insurance, she decided to pack up her car and her children and move to a state in the Northwest. A friend who had grown up there had decided to return home, and, when Zoe learned that there she would have access to better resources for herself and her children, she decided to follow: And I took [that car] out to [the state in the Northwest]. Took my younger three kids and Freddie the poodle. Anything we could fit into that ’85 Grand Am went with us, and we lived in a tent for a while. BLM [the federal Bureau of Land Management] has campgrounds all over there for free; [there were] food pantries we could go to all the time. [ . . . ] The kids loved it out at the campground—hey we’re camping! I didn’t really think of myself as homeless; we had shelter, we could access food, we had rivers . . .

Although the move meant a period of living without stable, permanent housing, this move to the Northwest proved to bring several positive changes for both Zoe and her children. The greater availability of state-subsidized resources made an enormous difference. Within ninety days she secured SSI and obtained regular access to health care through the state’s Medicaid program. At the local Health Services office, she began to be evaluated for a liver transplant. And her limited work capacities were finally acknowledged: “Like I said, it took going to [the Northwest state] for them to [cover my medical care], and the doctor [there] said, ‘You’re working in a hotel? You’re not supposed to be around chemicals! You can make beds if you can handle it.’” She also was made aware of a program for divorced parents. With this newfound support, she officially ended her marriage to the man who had long been abusive and remained a lingering potential undertow. About a year later, her father’s death prompted her to move back to her home state. “So I packed the kids up and drove back in another car, with a hitch put on it; I got that car from an impound lot for $300—it was a good car—and pulled a U-Haul trailer back home.” More important, having now qualified for SSI, she was able to maintain health care coverage through Medicaid. This health care access enabled her to continue the transplant evaluation process at the Transplant Center, where she was eventually admitted to the liver waiting list. Her three-and-a-half months of waiting, however, were both scary and difficult. She tried to maintain a home life for her children. At a minimum, she told me, she expected herself to be able to cook for them, having worked so long in food services. But her health continued to decline, and she began to

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experience new complications related to her liver failure. As toxins accumulated in her body, she developed encephalopathy, which, as she put it, “makes you looney.”8 She explained, “I went to my neighbor’s apartment, thinking I was at my own place, and they said, ‘Do you know where you’re at?’ And I said, ‘Yeah I’m at home. What are you doing here?’” The neighbors called 911, which brought both the police and an ambulance ride to the hospital. Once her condition stabilized, she could no longer remain an inpatient. She did have kin nearby, but none at the time could or would provide the level of care she needed. Thus, instead of moving to her own home or that of a loved one, Zoe was discharged from the hospital to a nursing home in a nearby town. She hated this arrangement, she told me; for one, she felt the facility’s conditions were unsanitary, and within days she’d acquired a bacterial infection. Moreover, being in this nursing home meant that she was separated from her children, who were staying with her oldest son’s father eighteen miles away. She said, “I was in [the nursing home] about ten days before they brought me back here to [my hometown] hospital, and then I had to come to [Metrotown] and had to spend three weeks here for them to undo everything that was done to me there.” At the end of this second hospitalization, she successfully lobbied to be discharged to her own home, rather than back to the nursing facility. In the meantime, with the previous intervention of emergency responders, the child welfare division of the state’s social services department had also been notified. A case worker had visited Zoe’s home and determined that its condition was unfit for her children. After learning this, her mother and brother (who had not until then regularly been a reliable source of help) rallied to clean the apartment in an effort to present a better case for allowing Zoe’s continued physical custody of her children. She recalls with contempt the unfolding of events and the ironies of being provided home health care without any other means of support to make conditions more livable for herself or her children: And then I came to the team meeting. The county attorney declined to press charges [for invading my neighbor’s property] because it was a medical issue, and CPS said the house wasn’t livable. But by that time, it was, because my Mom had come over. I think it was kind of chicken shit of them because they knew I’d already been in the hospital [before] and they weren’t willing [at that time] to set me up with some help. It was a medical issue and they were bringing home health over and having them check on me [but] I sure could have used somebody like a housekeeper



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or provider kind of person. And then after my transplant, they dinked around so long [to arrange for domestic help] that I got somebody signed up to do it. And they took so long to do that, they decided, “Well you don’t need any help now.”

Zoe eventually regained custody of her three younger children, and with the transplant she has rebuilt the stamina necessary to manage the household. Finances, however, continue to be a major concern. The SSI program remains her source of income, and it perennially falls short of covering the combined expenses of her children’s daily needs and her own medical requirements. She explained the calculus of her situation: for her post-transplant regimen, she currently has to take twelve drugs daily, for which her monthly copay expense is twenty-five dollars. By itself, she acknowledged, twenty-five dollars may not seem an overwhelming cost, but it takes on new meaning when placed in the context of her larger circumstances: Twenty-five dollars could make a little bit of difference on something, I don’t know, like half a tank of gas for my car or a pair of shoes for my kids. So it adds up, you figure three hundred dollars a year on co-pays. As long as I’m drawing a dollar of SSI, I can be on Medicaid. (Laura: And that’s what would drop off if your income went up?) Right, I could make sixty-five dollars—this is messed up, this is really messed up—I could make sixty-five dollars before they start taking, for every two dollars I would make, they would take one dollar of it away. [ . . . ] If seventy-five cents could drop you off [of public assistance], it’s just too cut and dry. Right, that seventy-five cents over might be just because you got an extra fifteen minutes this week [at a job] that you won’t get the rest of the time. [ . . . ] It makes no sense. There is no way you can raise kids on $637, plus their $364, because their dad doesn’t pay child support. He’s ordered that he owes me for a couple of years now. That’s why I was out cutting firewood; that’s why I do the things I do.

At another point in our interview, I asked Zoe about the transportation service that she had used to get to the Transplant Center for her appointment. As she described the arrangements, further ironies surfaced: Yeah, my car won’t go out of town because my car is a piece of crap, and that’s another thing. [This state], if you’re on an employment program, they will fix your car unless it costs more than the value of it to fix. And then if you work someplace for thirty days, like thirty hours a week, then they will put $2,000 toward a car for you. But on a medical issue, they’re

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willing to pay that transport. I tell you what, the transport costs five hundred dollars every time they send me on it, right? Ok, put five hundred dollars into my car, and don’t be buying the transport next time! And they will not help you get a car and get your car repaired if you’re not in an employment program. But they’ll pay five hundred dollars for that damn [medical] transport.

This last irony—that the state would pay for medical transport services but would not apply like funds toward a reliable car that Zoe could drive herself, unless she was in an employment program—brings full circle the absurdities she has encountered. Policy Paradigms

Zoe’s story situates transplantation within a larger policy paradigm in the United States that entwines work-centric, neoliberal approaches to desperate situations on the one hand, with an orientation toward intensive, acute, downstream care in US biomedicine on the other hand. This entwinement creates conditions where home health services are forthcoming, but basic housekeeping support is not. Moreover, rather than preventative interventions or even appropriate care upon her diagnosis of hepatitis C, Zoe was unable to access health services until her condition was beyond treatable and when only a transplant could save her life (see Chapple 2010).9 Moreover, as an articulate critical analyst of her own personal fable, Zoe opens a wider window onto her liver failure as a “politically induced condition” (to borrow from Butler 2010, 25). She argues that her need for a transplant could have been delayed; indeed, with better conditions it might have been prevented altogether. It may have been a shared needle that actually introduced hepatitis C into Zoe’s body, but the nexus of her etiology sits at the intersection of Zoe’s local world and a shredded social safety net. Her need for a liver transplant precipitated from her lack of insurance and inability to seek medical care when she first began to feel ill, and her need materialized out of a providers’ failure to present appropriate treatment options at the time of diagnosis. The transplantation solution grew under a host of obstacles held in place where access to health care is tethered to employment, even when illness makes it difficult to work. Furthermore, Zoe’s path toward transplantation followed the contours of rural poverty and limited opportunities. Her addiction to meth was compounded and prolonged by her relationship with an abusive husband, who likewise was addicted. With almost no resources available to someone in Zoe’s position, the fact that she was able to stop using meth and eventually leave



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her husband could justifiably be considered a rather unlikely and odds-defying outcome. Thus, her story underscores the folly of a piecemeal system sectioned off by state,10 by program, and by policy. It reveals the effects of myopic understandings of vulnerability and misguided notions of how health and social policy should connect. Rather than working in concert in ways that sustain public well-being, as we see with Zoe’s experiences, health and social policy structures can insidiously overlap in ways that effectively coerce, obstruct, and penalize. Not only is such a milieu uncaring at a macrolevel, but also at the micro-interpersonal level the milieu renders the ability of individuals to care for one another much more difficult, sometimes even impossible. At the time of our conversation, these conditions all but ensured that such unnavigable contradictions would continue to ripple out beyond Zoe. Even with a transplant, she and her children remained in an extremely precarious position, in which they together would remain comparatively more exposed to vulnerability for years to come (Butler 2010, 25–26). Though she received supplemental income, it was not nearly enough to provide for the needs of the household. Fulltime employment might have brought a higher wage, but if she lost eligibility for her supplemental income, she legitimately feared that her eligibility for Medicaid could soon follow.11 As a single mother with only a GED diploma, it is unlikely that Zoe would find a job in her rural area that would offer affordable employer-provided health benefits. Moreover, under the US system of health insurance as it stood at the time of our interview, with preexisting conditions restrictions and lifetime benefits limits, Zoe had good reason to assume that her medical history and current needs left her all but uninsurable in the private market for health coverage. In light of her present circumstances, though, borne out of a deeply flawed and fragmented social safety net, Zoe honored her obligations toward her dependents as best she could, chopping and selling firewood here and doing other things that “get her a little money” there. The ACA: A New Direction or the Status Quo?

On Monday, March 22, 2010, the radio alarm clock began the day with a flurry of news stories about passage of a bill in two subsequent votes by the US House of Representatives. With the enactment of health care reform under the 2010 Patient Protection and Affordable Care Act, several important changes began to unfold. The act extended health care coverage to millions of uninsured persons in the United States through a variety of avenues. Individuals were now required to carry health insurance or pay progressive fines, but they were

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offered a range of options and support for securing that coverage. First, they could continue to access coverage through employers. The act required businesses with more than fifty employees to offer health insurance or face fines of $2,000 per full-time worker in excess of thirty employees, and tax incentives encouraged more small businesses to offer health insurance plans. Next, Medicaid covered a greater portion of persons through an expansion in states that opted to fully participate in the provisions of the new law. Specifically, a larger segment of the population would qualify for Medicaid, including persons earning up to 138 percent of the federal poverty guidelines (in 2015, this figure was $27,724 for a family of three).12 Finally, individuals who did not have health insurance through other avenues were required to purchase coverage privately or face financial penalties that increased each year of noncompliance. To offset this last requirement (known as the “individual mandate”), the soon-to-becreated Health Insurance Exchanges offered lower-cost plans, and tax credits went to those making incomes above the new Medicaid thresholds but below 400 percent of the federal poverty level. Most important, the act lifted some of the most reprehensible barriers to accessing health care coverage. Especially significant for patients like Zoe, with the passage of the ACA, insurance companies could no longer deny coverage for preexisting conditions; they could no longer drop persons from their insurance rolls when they became sick or impose lifetime caps on coverage amounts; they also could no longer charge higher premiums based on health status, gender, or other factors. (In fact, higher premiums could be charged only based on geography, family size, or tobacco use, and the ratio of highest to lowest premiums on providers’ different plans could not exceed three-to-one).13 Even as the law disappointed hopes for a universal, single-payer system, the loudest opponents of the legislation—both prior to its passage and since— predicted that the Affordable Care Act (dubbed “Obamacare”) would trigger grave consequences for both individuals and the nation as a whole. Apocalyptic predictions of “death panels” and an utter systemwide collapse characterized the discourse of opposition from the beginnings of this recent national conversation on health care reform, notably ramping up with shout-downs by enraged crowd members (often affiliated with the Tea Party movement) during congressional town hall meetings in the summer prior to its passing. Indeed, the law’s implementation has not been seamless. For example, the HealthCare.gov website proved unnavigable for many who tried to sign up for insurance during the 2014 Open Enrollment period. By that time, multiple challenges to the ACA had already been mounted, most frequently in the Republican-controlled US House of Representatives but perhaps most substantially



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in the Supreme Court.14 In 2012 the Supreme Court upheld the mandate for individuals to obtain health care coverage but cut enforcement of the Medicaid expansion, which therefore allowed individual states to decide whether to participate in this provision of the law. In June 2015 the Supreme Court upheld the ACA against its latest challenge and ruled that the federal government indeed could legally provide tax subsidies to help lower- and middle-income citizens purchase health insurance through Health Insurance Exchanges in states that opted to allow the federal government—rather than the state itself—to run the state’s Exchange (see, for example, Liptak 2015). Even without these obstacles, the ACA falls short of offering universal access to health care by its continued partial approach to policy that leaves several gaps unfilled. For example, since the ACA had been designed to cover those with low incomes through an expanded Medicaid program, it does not offer financial assistance for non-Medicaid-based coverage to those in poverty. Thus, states that do not expand Medicaid create a “coverage gap” for lowincome persons who hover above the state’s traditional Medicaid eligibility threshold but below the limit where tax credit subsidies would be available for insurance through the private marketplace.15 As of June 2015, only thirty states including the District of Columbia had adopted the Medicaid Expansion under the ACA, which left twenty-one states where individuals like Zoe might still struggle to obtain coverage.16 The hegemony of the status quo more generally in US health care is a product of ongoing historical factors (Stevens, Rosenberg, and Burns 2006), including entrenched inequalities. Scholars have highlighted, for example, the longstanding role of racism and racial politics as key explanatory elements in the persistent lack of national health insurance in the United States (Boychuck 2008). Beatrix Hoffman (2006) describes “the historical ambivalence and contradictions of US attitudes and policy toward immigrants,” together with “the continuing irrationality of the US health care system, in which spectacular technology and expensive medical miracles flourish alongside the denial of basic health coverage and services to millions” (Hoffman 2006, 249). Hoffman was writing specifically about the issues raised in the case of Jesica Santillan, a seventeen-year-old undocumented immigrant from Mexico who, as a result of a medical error, was given a heart-lung transplant with organs of the wrong blood type. This ambivalence likewise is instantiated more broadly in the Affordable Care Act, which explicitly does not extend coverage to the population of undocumented migrants living and working in the United States. This categorical exclusion is interlaced further with ongoing racism, evidenced during President Barack Obama’s September 2009 address to a joint

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session of Congress, in which he outlined his then-proposals regarding health care reform. The president made a point of stating that his proposal would not extend insurance coverage to those who were in the country illegally, and Representative Joe Wilson from South Carolina shouted back, “You lie!” The national conversation following this incident revolved around whether the president’s claim was indeed truthful, with some discussion of whether Wilson’s outburst represented racist disrespect for a Black president. All but absent were any stated concerns for the implications of health policy that specifically and explicitly brushes aside the needs of a disadvantaged population. Still other scholars highlight evidence that those at the top of professional hierarchies in health care (particularly physicians) and others who historically have been well-served by a private and profit-friendly health system have repeatedly and effectively resisted efforts toward comprehensive national health care coverage (see Lotto 1998; Posner, Gild, and Winans 1995; Quadagno 2005). Even under the Affordable Care Act, heavy reliance on for-profit, private health insurance continues and accompanies a continued failure to fully recognize the role of other factors, beyond health care, in more broadly shaping wellbeing. Nevertheless, the passage of the ACA did mark a step toward addressing some of the most egregious abuses endemic in the system as it stood in 2010. And according to the Gallup-Healthways Well-Being Index-Survey, the uninsured rate among US adults had dropped from its peak of 18 percent in 2013, to 11.6 percent by the third quarter of 2015.17 Transplant as an Example

For its part, transplantation becomes a ready case study in debates concerning the financing of high-tech, high-cost medical interventions (Kaufman 2009, cf. Schuck 1989). During fieldwork, for example, Arizona made national news when it ended state Medicaid coverage for certain transplant procedures (Lacey 2010a, b). The full costs of transplantation are impossible to meet on an out-ofpocket basis for all but the very wealthiest individuals. Under the Affordable Care Act, many will receive better and more consistent care earlier in their course of illness, and transplantation might be avoided altogether. Under the new law, for example, Zoe likely would have received an earlier diagnosis and effective treatment for her hepatitis C, and a transplant could thus have been delayed or even made unnecessary. For those who do come to lose function of a transplantable organ, the new law also will likely improve access to transplant medicine (Axelrod, Millman, and Abecassis 2010a). This is significant in part because an inability to pay for the transplant and post-transplant maintenance therapies can be considered an excluding factor for persons who otherwise



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would qualify for the procedure, which effectively bars access for uninsured persons. Additionally, changes to Medicare Part D prescription drug coverage under the ACA likewise improve matters for transplant patients, who must take myriad and expensive medications long-term. New provisions have been designed to close the Medicare “donut hole,” which previously required beneficiaries to pay 100 percent of their annual prescription costs once their total costs had reached a certain amount and until their total reached an upper limit in costs, known as the “catastrophic coverage limit.” The coverage gap and its out-ofpocket expense to beneficiaries varied from one year to the next, but in 2008 the gap was projected to grow to over $6,000 by 2016.18 Under the new regulations, by 2020 Medicare will pay 75 percent of covered drug expenses from the time beneficiaries meet their deductible until they reach the out-of-pocket maximum, and will require manufacturers to discount by half the costs of brandname prescriptions while beneficiaries are in the coverage gap (see Axelrod, Millman, and Abecassis 2010b). While significant in themselves, the costs of transplantation tend to receive closest scrutiny within larger discourses about the role of the state in an increasingly neoliberal political landscape. Opponents of the Affordable Care Act in fact periodically point to organ transplantation as an area of medicine that could become less available under the new law; they assert, for example, that the Independent Payment Advisory Board (IPAB), charged with containing Medicare costs, would ration payment for organ transplants on a case-bycase basis.19 Aside from the fact that the IPAB has not actually been launched (see Oberlander and Morrison 2013), restrictions on transplantation under new insurance plans that have coalesced under the ACA tend in fact to be holdovers from pre-“Obamacare” insurance practices (see Bryan 2013).20 Politicians from the political right also vociferously critique the regulatory complexity of the new law. During my pre-ACA fieldwork, however, participants’ direct experience spoke to how extremely complex, confusing, and difficult it already was to successfully navigate all the regulations, caveats, and bureaucracy-laden pathways of the fragmented system. In transplantation and elsewhere, health coverage was widely subject to forces over which persons actually had little control, and “holding it together” could require intensive amounts of careful, concentrated attention to managing several moving parts. Zoe’s story certainly illustrates this. Even among those who did enjoy some form of health coverage at the time of my fieldwork, limited by either time or expertise on insurance and billing matters, oversights by patients or loved ones could prove costly.

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Insurance Is Very Confusing, and They Don’t Give You a Lot of Help

Hank, white and now in his sixties, had been born and raised on a farm in the Midwest. After marriage, he and his wife made their home in a small town not far from where he grew up; there they had raised their three children, two of whom also now live in the same town and one just a short distance away. Together they owned and operated a small garbage and yard waste service. His wife now drives the truck full time; his son performs repairs; and Hank fills in where he can and as his health allows. Hank, a current liver recipient, was now in end-stage renal disease as well. When we spoke, he was planning heart surgery in the near future in an effort to try to become medically eligible to rejoin the kidney waiting list. His daughter and main caregiver was Eliza, also white, in her mid-thirties, and an office manager who commuted to Metrotown for work. Together they described their ongoing dealings with insurance and other financial aspects of Hank’s medical care. At the time of our conversation, Hank was still making payments on his medical bills from his first transplant. His private insurance helped to pay for it, but the costs of the transplant and related medical care had exceeded his $250,000 policy limit (Hank said, “it took all that, plus”), and he still owed thousands. Eliza noted, “Now . . . he’s [recently] been able to get onto Medicare for disability. And we just recently, we wish we would have known this sooner— a lot of times it’s our own fault because we didn’t research things but a lot of times it’s, insurance is very confusing and they don’t give you a lot of help unless you actually go to somebody that specializes in it—but we just found out that the [Medicare] Part D does cover some of his medicine. So he has been able to get onto that.” Hank added, “Blue Cross Blue Shield just signed me up for a supplementary policy that will help Medicare, that whatever they [Medicare] don’t pay, they’re [the Blue Cross Blue Shield Supplemental Policy] supposed to pick up. It’s kind of expensive, but it’s gonna be less than what heart surgery and transplant will be. So we got hooked up with that [ . . . ] just in time to maybe do [cover] some of this.” At the time of fieldwork, while Hank, Eliza, and many others with whom I spoke might have bemoaned their dealings with insurance matters, persons usually considered it primarily their own personal responsibility to properly navigate the system. Eliza was not alone in attributing mistakes that were made (in their case, not realizing sooner that they could have had coverage for some of Hank’s costs through Medicare Part D) to a failure on their part to sufficiently do their research or ask the right questions. Zoe’s insights and thoughtful comments about the larger structural obstacles she faced were actually quite



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exceptional among the participants in this study, and even her critical stance was tempered by assumptions of personal responsibility. Such emphasis on personal, rather than macrosocial causal explanations for hardship are common in the United States, especially so in the midwestern context of these findings. This emphasis stands in contrast, for instance, to the perspectives of poor Egyptian dialysis patients documented by Sherine Hamdy, who writes that “the ways in which people make sense of illness are inevitably political moves that either ignore or speak to power” (2008, 563). Pointing to the “political etiologies” of illness, Hamdy’s interlocutors drew connections between their own individual struggles and larger social injustices created in the wake of the failed Egyptian state. More typical among those with whom I spoke, the onus was much more local. Local Responses and Unmet Needs

We must understand the continued state of health care and health policy in the United States within the context of other values on which the status quo leans. Transplantation, again serving as a telling case example, has intersected directly with federal health policy (Kaufman 2009) and its formation since the 1960s, when End-Stage Renal Disease came to qualify persons for automatic coverage under Medicare.21 Aside from retirement and disability, renal failure is the only specific condition that has this status. Some argue that efforts to secure federal ESRD coverage decades ago were augmented by a widespread sense, enacted at local levels, that ability to pay for ESRD-related medical care should not be a precondition for access to it (Plante 2000; Schreiner 2000). In communities across the United States, “people had bake and candy sales, collected coupons (Kool cigarettes, Betty Crocker), ran marathons, played bridge, hit golf balls, competed in cook-offs: all to one end, to support someone in need of dialysis” (Schreiner 2000, paragraph 13). Similar fundraisers in fact continue today, but, instead of benefiting dialysis patients, they support transplant hopefuls and recipients. Throughout fieldwork, local newspapers and television affiliates announced and reported on events hosted across the region to raise funds for persons struggling to meet the costs associated with transplantation. Consistent with the past, the focus of such fundraisers remains on immediate needs and last-resort interventions, rather than on the upstream factors out of which organ failure precipitates. Rather than serving as local catalysts for larger national health care policy changes, today’s efforts remain primarily an ad hoc patchwork that addresses only partially—and unequally—the persistent shortcomings of our current system.

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Moral ambivalences around both the receiving and the giving of support in the form of money seem to underpin these limits. This came at least partially into view as I sat and talked further with Hank and Eliza at Hank’s kitchen table. With Hank coming to tears, they described a fundraiser that Hank’s friends had organized on his behalf about a year after his liver transplant, through which they gave Hank ten thousand dollars: Eliza: They did a big barbeque pork dinner thing at the park. And they had a bunch of businesses and individuals donate items, and they had raffles. And they had homemade quilts and homemade knives that this guy makes, that he carved out of deer antlers, and just all kinds of stuff that people donated. And the dealership that my dad worked at for years donated a car. They really put together a nice benefit. Hank: Quite a deal. People from small towns pretty much hang together. They come out and open their billfolds and just dug in. Eliza: I think it means a lot more when you know that person and you know the money’s actually going to that person. Like I always feel guilty because I hear all these stories even in Metrotown, and yet you don’t know if you can trust that the money is truly going to that family. But when you know that there’s something going on and it’s here and you know the people that are doing it, you know that the money is getting back to that family. It was clear that accepting this help was in many ways difficult for Hank, who had long been a proud pillar of his community. Others likewise alluded to how hard it can be to accept so much help from others. There is very little that a candidate or recipient can do to feel that they are appropriately or adequately reciprocating the outpouring of social, emotional, and material support that can often accompany transplantation. This can be especially so when patients receive this support from persons with whom one shares ties too close to be sanitized by distance or anonymity, yet too loose to be considered kinship; this was undoubtedly the case for participants like Hank from small towns or those who had worked in particularly supportive employment environments. From another perspective, I suggest that Eliza’s remarks, though certainly well-meaning and intended to support the implicit urban-rural comparison her father was making, point more critically to a larger moral landscape that props up charity at the expense of more equitable and sustainable collective approaches to human vulnerability. Eliza links one’s willingness to open one’s wallet for a person needing help to the degree to which potential financial



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donors actually know the person and his or her family and can be assured that any money given will go directly to the person in need. In this particular historical moment, personal acquaintance with a patient or family bestows upon them a moral status that makes those in a position to give more sensitive to their obligation to do so. Outright strangers, however, are not accorded this same status. This sentiment illustrates what Cheryl Brandsen has identified as an obstacle to truly addressing large-scale social problems and an outright danger to poor communities. Such well-intentioned activities risk becoming “a myopic sort of community caring, where those communities already advantaged by resources of time and finances are able to care for their own but unable or unwilling to extend their resources to those distant from themselves” (Brandsen 2006, 208; see chapter 7). On Zoe’s Shoulders

Formal regulations concerning the production and maintenance of health, therefore, intersect powerfully with local values that frame connectedness primarily in private interpersonal terms. The holes in social policy revealed by Zoe’s story can also be taken as hidden and structured assumptions about the capacity for kin or other loved ones to help hold life together for a person who has fallen ill. Assumptions concerning who should care for whom do not always map neatly onto daily realities and constraints. As Clara Han (2011) demonstrates through her ethnographic work in Chile, there are significant lived tensions between care and precariousness. In the United States, the same emaciated institutional patchwork of social policy that slopes toward transplant likewise creates a need for unpaid caregiving in private domestic settings with little publicly funded assistance (see chapters 5 and 6). For Zoe, as illness, transplant, and post-transplant needs compelled her to draw upon a wider network of support, kinship obligations only partially held up. This came to light when I asked who she did and did not feel comfortable approaching for help. Zoe went to her oldest son’s father to ask for his help with her children, and he agreed without reservation or stipulation. Her mother came with her to the hospital when it was time for her transplant and stayed with her during her ten days as an inpatient and six weeks in the Transplant Center hotel as an outpatient. Zoe emphasized that their time together substantially restored the ties between them that had been damaged during her time of heavy methamphetamine use. She also approached her brother and his wife for help, mostly to be additional care support for her children. Zoe remarked, “I just thought my brother would help me because he was my brother.” Much to her disappointment, though, these requests for help have been denied. “The other day, I called

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her [my brother’s wife] because my son was getting out of school and needing a ride to the clinic so he can get his allergy shots. And it was pouring rain, and of course I’m halfway in-between my ‘part time job’ of coming up here to the auction block [to the Transplant Center], and. . . . my son ended up walking home in the rain with no allergy shots. I don’t go to my brother’s house [anymore] because I don’t want to cause drama for him.” I did not have an opportunity to meet others in Zoe’s life, but through our conversations it became apparent that she was not in fact enmeshed within an extensive well of unconditional help. She pieced together support from a number of persons, including her mother, brother, eldest son’s father, and others, but they did not form a seamless web of care for her. She did not disclose whether she felt this was the case because her relations had become frayed by years of drug abuse, or because those closest to her simply were too constrained in other ways themselves to fully help, or perhaps for other reasons. Zoe, however, did specify that she herself had long been the person in her kin and social network to whom people usually turned when they needed help. She explained: “It was great that people would help out, but it was really, really, really hard to ask them because I’m the go-to. I’m the fixer. I’m the one people go to with, ‘Man, I don’t know what I’m gonna do.’ And then I had to turn around and say the same thing. I was always the one who pulled it out of my butt, you know, and fixed it for everybody else.” Against this backdrop, we see that patients, too, act as caregivers to their loved ones, often entering into transplant with deeply felt obligations to others and turning to transplant only as a means to continue honoring those obligations.

Chapter 4

When Patients Are Also Caregivers

When I had opened the clinical exam room door to introduce myself to Mr. and Mrs. Saiz (a scenario I described in chapter 1), I had startled Mrs. Saiz from a slight doze. Almost immediately, she began to explain, half apologetically and half sleepily, “I had to take Benadryl because I had an allergic reaction last night, and it’s really knocked me out.” Mr. Saiz added, “My wife started swelling up after she ate an egg roll, and we had to spend most of the night in the emergency room, so we’re both a little tired.” Mr. Saiz later added, “I want to have a transplant so that I can go back to work. My wife has a lot of problems, and I take care of her, and she takes care of me, but I don’t want her to have to work so hard. That’s why it’s so important that I get better. This is our last and best hope.” Although Mr. and Mrs. Saiz were at the Transplant Center so that he could begin clinical evaluations for the hoped-for kidney and pancreas transplant, each literally had been both a patient and a caregiver within a twenty-four-hour period. As I observed their interactions with clinicians who were both gathering and disseminating information throughout the morning, it was clear that the couple had perfected a delicate dance familiar to many participants. At certain points, Mr. Saiz took the lead in answering clinicians’ questions and asking them his own, while at other times his wife stepped in and led the couple’s side of the high-stakes conversation. This dance had become quite familiar because, for them, the designation of who gives care and who receives care at any given moment was entirely dependent upon the immediate context. From this couple and from others, I learned that even very ill persons still expressed and practiced care toward others, sometimes by the very act of seeking transplantation.

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Orienting toward Care

It is worth mentioning that this view of patients as caregivers by and large was not explicitly widespread among those whom I met through fieldwork. At the Transplant Center, no patient’s prelisting evaluation was complete until they could identify one or more persons in their life who would be there to support them through the process, and the people with whom I spent my time were quite used to being categorized and referred to as either a patient or a caregiver (“care partner” was the official term in use)—not both at once. For example, when I first met Janet, a kidney transplant patient who was white, in her late fifties, and divorced with her adult son living at home, she planned to go directly from her outpatient transplant clinic appointment to an inpatient unit of the hospital. There she would visit her mother, a woman in her early nineties with early signs of dementia who had recently fallen. Some weeks later, in a rather literal demonstration of simultaneously being a patient and a caregiver, Janet received her kidney transplant at the same time that she was in the very process of having her mother move in with her, too. I once described some of my findings to her, citing her relationship with her mother as an example, and Janet replied, “I don’t really see what I do for my mother as ‘caregiving.’” She likened the arrangement more to being roommates because her mother still helped out with household chores like laundry and light cleaning. Though I pointed out all of the types of assistance that she provided daily—including help with bathing, providing meals, offering companionship, coordinating medical appointments, and providing transportation—the fact that her mother was not yet completely dependent left Janet unconvinced of her own caregiving status. Care thus can have a tendency to remain hidden in its many diverse forms (see Olesen 1989) and might not be recognized as “caregiving,” even by those who are providing the care. More broadly, feminist care ethicists Berenice Fisher and Joan Tronto assert that care can entail any type of activity we perform in order to “maintain, contain, and repair our ‘world’ so that we can live in it as well as possible,” with our “world” consisting of all the interwoven threads of a “complex, life-sustaining web” (1991, 40, also cited in Tronto 1993, 103). Patients entered into the transplant process as caregivers to others, in search of a way to repair a world torn by illness. In some cases, transplantation was sought to overcome struggles with failing health and to retain or regain a capacity to take care of others, especially children, grandchildren, aging parents, or a spouse. In other cases, transplantation presented itself as a way to decrease the burden one’s illness had created for others. Overall, though, patients’ understandings of their obligations to others could orient them toward their treatment options in particular ways.



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The moral orientations guiding persons toward (or away from) transplantation emerge out of historically situated sociopolitical beliefs, values, and practices (e.g., Hamdy 2012). Sharon Kaufman and colleagues have observed a “perceived impossibility” among patients “of saying no—even in late life— to life-extending interventions” (2006, 82; also see Kaufman 2015). In talking with patients and loved ones I likewise observed that the pursuit of a transplant might not rightly be considered a “choice” that people make once they’ve weighed the facts; rather, it becomes the right thing to do in the local moral context of life lived in relation with others (also see Kleinman 1988, 1999, 2006; Murdoch 1998a). Indeed, it was the rare patient who boiled down the pursuit of transplant to a desire to live at any cost. Rather than uncritically accepting this biotechnological solution to their serious health problems, many actually regarded it with significant doubts, fears, and overall ambivalence (also see Wiebe 2004).1 Sometimes, patients pressed onward only at the insistent urging of others. Loved ones rely on transplant patients, and most transplant patients were deeply sensitive to this so that the very pursuit of a transplant could become an act of care in itself. Not Being Able to Function as a Mom or a Wife

Betsy, a nurse practitioner in her late thirties, white, the mother of a son and two daughters, and married to her husband for fourteen years, described her experiences in a manner which highlighted the limits of self-determination in transplantation. She had undergone a pancreatic islet cell transplant. In this procedure, islets (the cells that produce insulin) are removed from the pancreas of a deceased organ donor using specialized enzymes (sometimes the pancreases of two donors are required in order to harvest enough cells) and then transplanted via a catheter into the liver of the recipient through the liver’s portal vein,2 and the islets then begin to make insulin in the recipient. Betsy had additional perspective because she recently had joined a clinical team at the Transplant Center where she worked directly with transplant candidates and recipients. At the time of our interview, she had about two weeks left of her recent medical leave from work. She had taken this leave in order to recover from her now second post-transplant surgery that she had needed to undergo to correct complications following the transplant itself. Backing up a bit, Betsy recounted how she came to need a transplant. During her second pregnancy, she developed pancreatitis. Her condition became progressively worse over the following years until she became so severely ill that she was unable to eat anything at all and had to get her nutrition via total parenteral nutrition (TPN).3 Though a life-saving treatment, this can also precipitate complications

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over the long term, including liver damage, so it is not desirable as a permanent solution. Describing the time when the option of transplantation first came up, Betsy’s comments highlighted the way in which informed “choice” about whether to pursue transplantation is dissolved by the larger moral issues of being able to fulfill one’s caregiving roles. It is clear that, in hindsight, Betsy is of two minds about the procedure. But she also insists that, at the time just before the transplant, the immediacy of her dire condition and the enormity of the stakes involved trumped all. Ostensible choice gives way to the intense hope that is embraced by those who see transplant as their only chance for being able to “function,” as Betsy puts it, in relation to one’s kin in ways that answer to the moral authority of convention. Here the conventions involve several main issues: being a mother who can show love to her children in particular ways (Hochschild 1983; Yarris 2014a, b); being a wife who, in concert with her husband, has divvied up the household’s labor along gendered lines; and being an employee who is reliable and consistent. Betsy explained, I can’t honestly say looking back right now that I would do it again. But at the time I didn’t have a choice because I was in the hospital and strung out on narcotics [for the pain], and not being able to function as a mom or a wife, or to work, and so at the time it was like, “Yes, do it because anything’s better than this.” Looking back now, I say that [I wouldn’t do it again] now, forgetting how sick I was. [ . . . ] You know I thought I’d have the surgery and get those islet cells and wake up and everything would be fine and [it didn’t go that way]. So it was frustrating to go through it all and not feel any better. [ . . . ] And I think for a lot of people who get a transplant, because you’re so sick beforehand, and they tell you all this stuff, but you’re selectively listening to what you’re actually hearing. They certainly told me all the things that could happen and that could go wrong, and they all did [go wrong].

I asked Betsy to elaborate on “not being able to function as a mom or a wife.” She continued: until her husband recently took a new job which afforded him “nine-to-five” workdays, he had been in the auto sales business for several years, which required him to work long days and odd hours. Although Betsy’s husband adeptly and without hesitation took on new roles during her illness, their former gendered division of labor and kin responsibilities had felt more comfortable. As she put it, it was “usually not that way; our relationship is the other way around.” She was used to (and preferred) taking care of most of the everyday management of their middle-class home life and child-rearing duties. Betsy juxtaposes her ability “to function as a mom or a wife, or to work”—to her, an admirable status—with being “in the hospital and strung out



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on narcotics”—a deplorable state in her universe. This contrast points further to the moral status of the particular ways she felt a mother or wife ought to act, function, and care for her loved ones. She recalled, It had come to a point where I was either in bed or on the couch on TPN twenty-four hours a day and missing, not school stuff like conferences and stuff, but like going to eat lunch with them [the kids], and even just getting up to do reading [with them] at night because I was so exhausted. So they were reading to themselves, and those kinds of things that I had been doing, I completely lost out on those things that you totally take for granted until you can’t do them anymore. I mean going to the park, taking them to the zoo, and stuff like that.

Betsy’s concern had been that her illness prevented her from being able to participate not so much in the official duties of parenthood—for example, going to parent-teacher conferences—but in the small daily, taken-for-granted caring acts like reading to her children at night, which for her defined motherhood and family life. This notion of what everyday life is supposed to look like and the hope that transplant can offer toward gaining (or regaining) normalcy were also cited by others as compelling reasons to pursue transplant. So That I Can Be Here a Lot Longer for Her

At 5:25 on a cool Saturday morning in late September, I watched a raccoon climb out of the parking lot dumpster and disappear into the thinning bushes nearby. Just a minute later, Emily (see chapters 1 and 3) emerged from her apartment building and shuffled over to my car idling beneath a glaring street lamp that daylight wouldn’t subdue for nearly another two hours. She had welcomed me to accompany her to dialysis this morning, and when we arrived at the dialysis center we walked through one set of automatic sliding doors and then waited for someone to “buzz” us in before we could walk through the next set of sliding doors. From there I followed Emily over to one side of a room where she enacted a well-rehearsed ritual of bodily practices. She stepped onto a scale and then used other machines to take her own temperature and blood pressure, which she self-recorded on a form that she later handed to the dialysis technician once she sat down at the station that had been assigned to her for this particular day and time. No less than three hours ticked by before Emily was disconnected from the dialysis machine. At that point, she waited another few minutes while a white plastic clamp was fastened to her arm to apply steady pressure where the large needle had been inserted and taped into place so that blood would not start

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to flow out. Once the site had adequately clotted, the clamp removed, and the “all-clear” given, Emily got back up out of the chair and weighed herself again, the method to check how much fluid the machine was able to remove from her body during dialysis. When we stepped back out of the windowless dialysis center, blinking at the now bright and cloudless sky, it felt like we’d just passed through a time warp, and I drove her directly back home so that she could rest for the remainder of the day. This was Emily’s routine three times per week. It not only kept her alive and in good enough health as she waited for a transplant, but her faithful attendance at these appointments also signaled to the transplant team that Emily was compliant with her regimen, consistent, reliable, and a good candidate for the procedure. And yet, exhausted from dialysis, she was unable to do as much as she would have liked with her young two-year-old daughter on that warm autumn Saturday afternoon, and she relied on her mother and brother to care for the little girl while Emily slept. Normally, the same mother or brother drove her to and from her appointments; not so long ago, her husband had joined the military for the much-needed health insurance and income (Emily had not yet been approved for long-term disability status), and he currently was stationed overseas. She and her daughter now lived with her family of origin, and though Emily was well aware of the effort they put into keeping her as healthy as possible while she waited for a kidney and pancreas transplant, her greatest motivation and hopes centered on her daughter whom Emily credits with saving her life. Now she saw transplantation as the only way to save them both from a world of doctors, dialysis, hospital stays, and an uncertain future. The following two excerpts are from one of a number of interviews and less formal conversations I had with Emily. This particular interview had taken place before the morning when I accompanied her to dialysis. At this point in the conversation, Emily described how her low blood sugar episodes had become both more frequent and more frightening for everyone involved. One recent incident had happened during a visit from her maternal grandmother and her nine-yearold goddaughter, who lived out of town. Emily clearly indicated that her greatest concern was for her daughter, but her description of the episode vividly illustrates the tangle of relations within which she was making her way. This meshwork takes the stakes involved from being a “simple” matter of life and death to being a matter of right and wrong. She was embarrassed that her relatives had to witness the effects of her blood sugar suddenly dropping, and her mother’s comments are part concern and part admonishment. Transplantation, in this context, becomes a means to break free from a morally compromised position. Continuing on this current “one-way” road, in any case, is out of the question:



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Emily: Unfortunately, [my grandmother and goddaughter] had to sit through one of my episodes. I don’t have the awareness that my blood sugar is dropping, but when it happens, not only does it happen quickly, but then I get stubborn about it. And I keep telling everybody, “You’re the ones that are crazy. I’m fine. I’m normal,” and the entire time I’m like falling asleep. [ . . . ]. My mom, this is how she looks at it, she’s like, “Emily, you are going to go on a trip and you’re never going to come back; that trip is a one-way trip to not coming back, because if you go into that coma, there’s a good chance you don’t come out of it.” And my not having awareness . . . is pretty scary to my daughter. It kills me to see what it does to her and how it really affects her because, it’s like she distances herself from me, she doesn’t want to be near me. She just wants to be cuddled by my mom, and then it takes her from a few hours to almost a day or two before she warms up to me again because she’s just so scared of what it was that just happened. Laura: So what does happen? Emily: They have to call the paramedics to get me out of it, because sometimes I won’t even wake up. And so the paramedics will come give me a shot of something to get me out of it. They ask me if I want to go to the emergency room. Usually I say no and then, other than that, I just sit here and have to look at everyone’s face of disappointment and being upset and scared, because it’s scary. I mean, I’m not living it on their side, so I’m not seeing what they’re seeing. But it’s also scary on my end. I just really feel for my daughter. I hate what it does to her. That’s why I’m just so anxious to get on this transplant list. I want to get this over and done with. Emily quite certainly had been told by members of the transplant team that, even if she did receive a transplant, it was possible that recovery from the surgery could take quite some time and could be disrupted by complications. This information is included in all prelisting evaluations as part of the extensive verbal and written informed consent process. Emily’s expectation, however, is that, once she gets admitted to the transplant list, she would soon be able to “get this over and done with.” Such imaginings of immediate results must be considered in light of her understanding of the urgency of the matter. She laments that her daughter has witnessed too much, is burdened by worry far beyond what a toddler ought to carry, is plagued by nightmares, often asks if Emily is okay, and has become highly sensitive to Emily’s blood sugar levels. Illness is an interpersonal, interrelational experience, with

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effects that go well beyond the individual to permeate kin groups at multigenerational levels. Emily’s comments reveal how thoroughly enmeshed are the lived values of kinship and care with the moral processes of working out what is to be done about illness. For Emily a transplant represents the hope not simply of a return to health for her own sake, but rather the hope of removing the trauma and suffering that her illness inflicts on those she loves and who love her back. At another point, Emily told me about her dietary regimen, medications, dialysis, and other tests and procedures—including major and painful dental work— that she had undergone in an effort to be put on the transplant waiting list. It has been difficult, she explained, but she does it because she wants to “be there” for her daughter. Transplantation for Emily, then, offers more than a promise of a longer life; it offers a way for her young daughter to continue to have a mother. “Being there” means something beyond mere existence. Instead, it carries with it a moral status that entails prescriptions for how a mother should be there for her young child: Emily: I want her to have a normal mommy, [ . . . ] a mom that can run and play with her, that can do things that I can’t do with her all the time right now. Right now, pretty much all I can do is, I can give her a lot of love and affection, but she needs a lot of physical play time and sometimes I just don’t have the strength to do it. And that really hurts me to know that I can’t do that for her. [. . . . ] I just want her to have a normal . . . I don’t want her life to be surrounded by hospitals all the time. [ . . . ] She’s too little to be worried. She should be carefree and playing and everything, you know? Laura: Have you told her that you are going to try to get a transplant? Emily: I told her; she knows why I am going to the doctor. She knows that mommy is trying to get better and that the doctors are trying to fix mommy, so that I can be here a lot longer for her. Because that’s my main goal in life now is to raise my daughter and to watch her graduate, get married, and have her first child. That’s what I want. I want to be able to see all that. I’m hoping that this will be the thing that I need to do all that. I know that they said that with a pancreas transplant, that would take the diabetes away. So that’s why I’m praying to get both [a kidney and a pancreas]. [ . . . ] Granted, I know that I’m going to be on medication for the rest of my life, because my body is going to try to fight the foreign . . . parts that are not, that they’re not used to, but . . . I don’t care about that. I’ll do it . . . because she’s so important to me.



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Emily focuses on her longing to bring her own mothering capabilities more in line with what she calls being a “normal mom,” who is able to do the sorts of things a mother should do with and for her daughter. While her brother and mother willingly and capably fill in where Emily cannot, she rejects this as an acceptable long-term scenario. Uncles and grandmothers, in this local moral context, are technically capable of performing parenting duties, but they cannot provide the moral equivalent of “mothering.” She acknowledges that the transplant will come with new challenges, but they are eclipsed by Emily’s great hope that the transplant will “fix” her and allow not only her but also her daughter to be freed from the confines, complications, and implications of kidney failure and unmanageable diabetes. To not opt for a transplant would be to fall short of fulfilling her responsibilities as a mother. A “Restraint” to “Centrifugal Tendencies”

Patients thus push onward toward transplant out of a sense that the procedure will enable them to better fulfill their duties and roles as caregivers to others. These obligations of care can include active practical action, but they can also mean providing shelter from worries, fears, and other detriments of serious illness. The feelings of being out of line with obligations toward others as a result of ill health can speak to broader social and cultural understandings about the moral expectations for mothers, fathers, husbands, wives, grandmothers, uncles, and so on. Indeed, there can be a deep reverence for the sorts of the kinship obligations cited by Emily, Betsy, and Mr. Saiz. In many respects this concept of familial responsibility runs counter to the much-touted American values of individualism and liberty and their main offshoots in the Western biomedical world—informed and uncompelled consent. Even if the patient has entertained reservations, it was not within the moral rights of any one of them to eschew the procedure, given their positions in relation to others. This scenario, but one among untold others found in all corners of social life, places transplantation in the larger context even beyond the immediate and more obvious domains of biomedicine and demonstrates the “moral authority” with which it has been invested (Durkheim 1995 [1912], 209). Transplantation offers new applications for Durkheim’s early insights about the primacy of the social: “because we fulfill this or that domestic or social function we are caught up in a network of obligations from which we have no right to disengage ourselves” (1984 [1893], 173). Not only do obligations in social life exceed matters of individual choice, he argued, but obligations also provide something to which we tend to adhere “irrespective of any utilitarian calculation of helpful or harmful results” (Durkheim 1995 [1912], 209). Durkheim explains further:

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“So the rest of society weighs upon us as a restraint to our centrifugal tendencies and we for our part share in this weight upon others for the purpose of neutralizing theirs. We ourselves undergo the pressure we help to exert upon others” (Durkheim 1951 [1897], 319). As moral wayfarers, patients and those around them make their way to and through transplantation within the tug and pull they exert on each other. This is not to say that there is no agency, no room for resistance, and no leeway for people to move against the grain. Certainly not all people with the kinds of health problems that transplantation is able to address always pursue the procedure (see, e.g., Gordon 2001), and it is worth remembering that it remains out of reach for many. But I also encountered instances in which people pursued transplantation, even though they may not wholeheartedly have wanted to do so. Kinship carries with it both obligations and rights. I met persons during fieldwork who probably would not have sought a transplant if it had not been for others laying claim to the rights associated with kinship and reminding patients of their obligations. The following sketches provide an ethnographic picture by underscoring the notions that the moral obligations of kinship are shared and reciprocal and are continuously worked out and reinforced in relation to those surrounding potential transplant candidates as well. Although my initial vignettes included persons who did not give real consideration to paths other than a transplant, I also encountered instances in which patients initially resisted transplantation until they were challenged, even reproached, by loved ones for stepping out of bounds regarding not only what was expected of them, but also what was needed of them. I Really Didn’t Think I Needed It, But Everyone Convinced Me I Did

I first met Blaine, white and in his mid-thirties, while he was an inpatient on the solid organ transplant unit. He was coming to the end of the relatively short portion of his post-pancreas transplant recovery that would take place in a hospital setting. Seated in the chair next to his bed, he extended his hand to me, and I shook it—not sure how hard I should squeeze because there was a white bandage at the back of it. At nearly that same moment, a young woman who was Blaine’s nurse came in and handed to him one of the small plastic cups full of pills that punctuate daily life as an inpatient. He suddenly seemed less fragile as he expertly tipped them back and swallowed them all at once with a few sips from the straw of his oversized plastic water jug, bearing the hospital name and logo, a standard issue to all inpatients. Upon becoming an outpatient in the next couple of days, these tiny pill cups were quickly replaced by a large pill organizer tray, present in most transplant patients’ private living spaces.4



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Although he currently lived in a small city in a sparsely populated area of the state, Blaine spent the remainder of his recovery time in the house in which he had grown up, located in an even smaller town, under the care of his mother. He was recovering there because his wife of ten years struggled with an ongoing addiction to prescription drugs; he and his parents feared that she might begin stealing and taking the medications he would need for pain after the surgery. In a later phone conversation, Blaine told me about the encouragement he had felt from his family to go ahead with the transplant, even though in his words, “I probably wouldn’t have went through the surgery [without] my mom pushing me because I just didn’t really think I needed it a whole lot, but everyone kind of convinced me I did, so.” One major reason for Blaine’s hesitation was his concern that he would be unable to make the payments for his modular home and pay his other bills if he had to miss much work while recovering. Although he had worked in the sheet metal department for a local construction company, he now relied on Medicaid and Medicare for his health insurance. Blaine explained that his insurance providers “don’t cover everything all the time.” He doubted, for example, that his home health care expenses would be paid for. On top of the financial hardships, Blaine had been concerned about whether the surgery would even succeed and have the intended effect of alleviating his wildly fluctuating diabetic blood sugars. He told me he had become diabetic at age nine as a rare complication of chickenpox, and, like many who are considered potential candidates for a pancreas transplant, Blaine’s blood sugars were not well controlled by even the most careful monitoring and treatment. His low blood sugar episodes were comparable to Emily’s, which I described. As Blaine explained, his family “really pushed . . . for it [the transplant] because they hated the low blood sugars. They really had to take care of me a lot because I was having a lot of [them]. [ . . . ] I’d pass out sometimes and they’d have to call the EMTs. . . . I wasn’t interested in it [getting a transplant] at all really and my mom and my dad kind of persuaded me to go through with it.” Blaine had adopted his wife’s daughter, now in her early teens, when she was three years old. He had helped to raise her from the time she was six months old and currently was her primary caregiver, as his wife’s drug use hindered her own ability to parent. Thus, in spite of his initial hesitation, between his need to remain healthy for his daughter who relied on him for her daily needs and the pressure from other family members who felt that the low blood sugar episodes were becoming too difficult for them to handle, Blaine’s movement toward and through transplant was inseparable from his obligations to kin. In the local moral world (to borrow Kleinman’s phrase) of his immediate and surrounding circumstances, pursuing a procedure that came with notable

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risks, even with no guarantee of a successful outcome, was the responsible and caring action to take. Taking the discussion yet one step further, I met one patient who minced no words: she told me that if it had been up to her she would have given in to her illness rather than undergo the agony of continued medical treatment. Her loved ones, however, laid claim to her obligations to them by the very fact that she was a wife, a mother, a sister, and soon to be a grandmother. The moral obligations these positions carry with them effectively restrained her “centrifugal tendencies,” in the Durkheimian sense. They served as a counterweight to her individual wishes and firmly nudged her back in line with her duty to family. Your Family Needs You!

Upon learning that she would need to have a port placed in her skull to deliver chemotherapy directly to a brain tumor and that she would need to have a stem cell transplant as part of her cancer treatment, Annette, a devout Catholic in her later fifties and white, turned to her husband and said, “Call our son home from Iraq; I just can’t go through with this.” With the transplant, Annette had been told, her odds of surviving increased from 10 or 20 percent to about 50 percent. Well-prepared for dying and death, she took comfort in her faith-guided certainty that it would bring passage to Heaven (see Heinemann 2011, 224–226). Just four years earlier, she had been diagnosed with—and had beaten—breast cancer. Nevertheless, as Annette recounted, her friend, her husband, and her sisters all worked to convince her that she had to attempt the chemotherapy and transplant because she was needed here, in this life. Her sister, Lynn, summed it up well during a long and poignant conversation at her kitchen table: I felt it was really important that we rally around her and pull her through this because she really had no desire to do it. And that upset me more than anything, that she just wanted to let this be the end, “I’m done.” And even when she was in the hospital and I was up there with her, one day she said to me when she was really in the depths of it, she said “I just want, just tell them to just let me go. I want to be done.” And I said, “But you’re not done and if I have to drag you through this I’m going to drag you through this! Your family needs you!” Her daughter had just had a baby and was living at home. There were a lot of things going on and I said, “Annette, you just cannot leave them hanging. She needs you a lot right now.” And we had that conversation more than once when I was up there with her.



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No one, of course, would have physically forced Annette to undergo this course of treatment, but it nevertheless was the compulsory path to take as a mother, as a wife, and as a sister. While Annette was ready to accept her own death, her family members were not. Despite Annette’s wishes or desires, her family, Lynn pointed out, needed her—Annette was obligated to live, or at least to try to do so. Additional examples abound. I met adult children who were caring for aging parents who were unable to live independently. Fiancés insisted that they wanted to be well enough to follow through on their wedding plans. Husbands were caring for wives with dementia and other health problems. One grandfather expressed his sincere hope to be able to live long enough to teach his grandson what it means to be a farmer. Transplant patients are by no means a homogeneous group, but with very few exceptions there was notable congruence in the awareness among patients that others were counting on them (even if patients did not always consider what they provided to be “care”), which seemed to cut across diverse social locations. Patients took this to heart even as they grappled with the challenges and problems that can come at any turn along the way. Moral Imperatives

Patients are important—often enough key—members of complex and reciprocal webs of care and obligation. Overall, when faced with the problem of incapacitating illness, patients who otherwise are unable to fulfill their caring roles and expectations instead come to express and practice their care by turning to the particular solutions offered by biotechnologically intensive medicine, despite the formidable risks and challenges. In many respects, transplant medicine runs in the current of a larger “technological imperative” in biomedicine (Koenig 1988; also Kaufman 2015; cf. Sharp 2014). In their research on living kidney donation and transplantation for older persons in the United States, Sharon Kaufman, Ann Russ, and Janet Shim argued that, as new biomedical technologies like transplantation have become more commonplace, the very nature of caregiving and love has changed so that expressions of care, affection, and value are now tied to clinical acts (2006, 82–83). Parallels are found beyond transplantation as well, in less intensive medical domains. Annemarie Mol, for instance, points out that the development of injectable manufactured insulin has changed the moral landscape such that opting not to take insulin if one is diabetic becomes tantamount to suicide (2008, 78). Even if they personally are reluctant to press onward through transplantation, patients’ kin and loved ones can be quick to enforce the social moral codes

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that hold them equally responsible as caregivers. As Emily helps to make clear, already deeply held notions of, for example, what a “normal mommy” should do (or be) for her young child can also compel a mother to pursue a transplant. In other words, moral obligations, such as those that inhere at the intersections of kinship and care, can augment the “moral authority” (recalling Durkheim’s insights) and the “pull” of biomedical approaches like transplantation. Although the particulars of individual case examples can differ, the product of patients enacting their values surrounding kinship and caring obligation in the context of interpersonal (and collective) processes is that transplantation becomes the right and caring thing to do. The procedure, then, can be more holistically understood as both a social phenomenon and an exchange propelled at least in part by efforts to do what is “good” (in a thoroughly local context), indeed to do what must be done for the sake of others (Heinemann 2014b). Care, thus, is transplanted, too. This becomes especially evident when we see that transplant candidates and recipients are neither uncritical passive consumers of biomedicine nor purely self-interested persons who seek simply to live at any cost; rather, they are simultaneously caregivers with significant moral obligations, which they can fulfill only by remaining alive and (more) well for the foreseeable future. In other words, transplantation offers one way to repair this world of relations (to return to Fisher and Tronto’s observations), to spare it from further devastation by illness, so that patients and loved ones can live in it as well as possible.

Chapter 5

Conscripting Caregivers’ Health (Or, When Caregivers Are Patients, Too)

With his comment (see chapter 4), “my wife has a lot of health problems, and I take care of her and she takes care of me,” Mr.  Saiz spoke to the interconnections between the health of supportive persons and the larger transplant endeavor. During their appointment, it was evident that both partners saw the transplant as a path for him toward paid employment and his restored ability to support his wife as he once had. For the time being, though, Mrs. Saiz, set to play a major role in ushering her husband through the process, actively drew upon her own extensive encounters with illness and her many years of navigating complex, piecemeal health and disability systems. In effect, her own health status—and her ample experience as a patient—situated her as a caregiver. As we saw in chapter 1, she actively assured the pharmaceutical financial counselor that she was the one who managed his prescriptions; Mr. Saiz’s confusion about them should not be a concern. She also was able to have a sophisticated and well-informed conversation with the transplant financial counselor. Keen to understand how financial standing and insurance status might relate to Mr. Saiz’s transplant, Mrs. Saiz asked for very detailed information. During their later consultation with the nurse coordinator, Mrs. Saiz began to ask about the logistics of living donation. She wondered, for example, could she herself be evaluated as a possible living donor? This vignette points to observations concerning the ways in which the health and well-being of persons in a candidate or recipient’s network of kin, friends, neighbors, coworkers, and others—who together comprise extended webs of care—are likewise implicated in the transplant process. While transplant teams attend to the health of recipients, the process and the system of

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which transplant is a part can also powerfully draw upon the health of persons closest to those recipients. Caregivers—both those who help with daily care and those who care about transplant candidates—can be patients as well. I examine this notion from two vantage points: The first highlights scenarios in which the persons caring for a transplant recipient become situated as caregivers mainly because of their dealings with matters of their own health. The second vantage point examines living organ donation. Initially, I did not expect to encounter overlaps in caregiving and living organ donation, but such scenarios did come to light during fieldwork. From both angles, loved ones’ health is drawn upon to buoy gravely ill individuals to and through transplantation. Moral negotiations intersect with political economy as caregivers’ health status is conscripted in these ways. Decline in Health, Decline in Employment, Positioned to Care?

To be clear, even as I highlight caregivers’ patienthood in this chapter, I do not intend to overmedicalize caregiving. My exploration here, of how loved one’s own health struggles can situate them as caregivers in transplantation, offers a different approach than prior examinations of caregivers’ health in transplant. These literatures often examine caregiving in terms of its burdens and largely focus on how carers’ mental and physical well-being and quality of life can be affected by having been a transplant caregiver (e.g., Burker et al. 2005; Canning et al. 1996; Dew et al. 2004; Siston et al. 2001;Wicks et al. 1998).1 While caregiving indeed can be burdensome, I also met candidates, recipients, and loved ones alike who explicitly described what they saw as the mutually beneficial dimensions of care. For an example, I return to Annette (see chapter 4), who had been comfortable with the idea of dying rather than undergoing cancer treatment and a stem cell transplant but was firmly told by family members that this was not an option. While loved ones were counting on Annette, she also enjoyed an exceptional level of support from a close-knit network of kin, friends, neighbors, and members of her church. Her husband had been a major source of support as well. But, she said, since he also worked full time (and needed to keep doing so), he would have had to take unpaid time off from his job either to take her to her many medical appointments or to stay with her in the daytime during her hospitalizations. Instead of her spouse, one of her sisters, Roberta, came forward as a primary caregiver, largely because her own health status had recently left her unable to work in full-time paid employment. Roberta had multiple sclerosis and had just taken disability retirement from the county’s Primary Health Care Department, shortly before Annette had learned of her diagnosis.



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In the job from which she had retired, Roberta had worked in medical billing at the county health level and thus had extensive knowledge and expertise to offer Annette in dealing with the complicated tangle of her medical bills. Roberta’s willing assistance in managing Medicare, private health insurance, physicians’ bills, hospital bills, and medication costs alleviated a great deal of stress and worry about the financial aspects of Annette’s treatment. But just as important, Roberta no longer reported daily to a place of employment. Although her own physical limitations prevented her from being able to climb the several steps up to Annette’s house (and thus she could not offer help in Annette’s home), Roberta could still drive. With her now relatively open and flexible schedule, Roberta was able to take Annette to all of her outpatient appointments. And when it came time for Annette to be hospitalized for the aggressive chemotherapy and actual transplant, Roberta was able to spend every day with her sister, which was crucial in covering workdays when other loved ones were not available. Annette told me that the two of them, already very close, became even closer throughout their experiences together; Roberta had become well attuned to her sister’s needs. Though neither made it explicit that this connectedness emerged out of a sense of shared experience with illness or debility, Annette said, “I was always more comfortable with Roberta there. It just worked. She knew when I was really fearful or tired.” Later Roberta explained: “and of course she thanked us a thousand times, but . . . it was good, it was good for all of us.” In fact, considering the care she received from her family members to be a reciprocal engagement among team members, Annette noted, “I did a focus panel at the Transplant Center about transplant and treatment. They asked everyone around the table if they felt cancer had been a burden to their family. I said, ‘No, it brought us closer together.’ Like my sister taking me to treatment; that was her investment in getting me well. They are investing in returning me to health. I don’t consider that as a burden. [ . . . ] I was the only one of ten people who said I don’t feel I’m a burden.” Roberta made it clear that she and Annette have helped each other out as each has needed the other’s assistance and support through the different health problems each of them has encountered over the years. Sometime after Annette had recovered from her transplant, Roberta broke her hip and needed extensive physical rehabilitation care in order to regain her mobility. This time, Annette drove Roberta to doctor’s visits, therapy appointments, and trips to the store. When I asked how Annette’s cancer and transplant affected her daily life, Roberta likewise spoke to the mutual nature of their support, identifying it as transformative (cf. Sharp 1995) in a reciprocal sense: “What this stem cell

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[transplant] has done, it’s taken Annette. . . . It’s just completely changed her life. Well, then that to me changes my life, too.” The picture, however, can involve much more ambivalence than that conveyed by Annette and Roberta. Recall Rob, for instance, who was the main caregiver to his wife, Mary, before, during, and after her liver, pancreas, and small bowel transplant (see prologue). He was available to care for Mary nearly around the clock, in no small part because his severe glaucoma and other health issues had left him unable to work full-time. Providing this care meshed comfortably with his moral kinship obligations to support his wife and with notions linking personhood and belonging to productive labor.2 “It feels good to be needed,” Rob emphasized. In addition to suffering from the very health conditions that had positioned him to be able to care for his wife and considering both heads of household were now unable to work in full-time paid employment, paying bills—including medical bills—had become all but impossible. Loved ones slip back and forth between patienthood and caregiving, maintaining footholds in each position as members of reciprocal webs of care. But a web’s ability to remain intact and supportive throughout the tugs and tensions of this slippage and to meet moral obligations is powerfully shaped by political economic conditions. In a system characteristically beholden to profit-driven interests, informal caregivers are more accurately understood not simply as providing care but also as producing health (Olesen 1989, 5). When those already suffering from health concerns of their own can be structurally oriented to become unpaid producers of health in this sense, there are grounds for further critical attention. These matters intersect directly with US health policy, most recently in the wake of ongoing political battles that run alongside yet also extend beyond the Affordable Care Act (ACA). For example, certain provisions built into the ACA when it originally passed would have organized more dedicated material support for home-based care. Specifically, under the Community Living Assistance Services and Supports national insurance program (referred to as the “CLASS Act”), individuals would have had the voluntary option to purchase insurance that they could use if they became disabled and required longterm care and support (Henry J. Kaiser Family Foundation “Focus on Health Reform” series). This program would have paid out to its beneficiaries a cash benefit that could be used to purchase nonmedical services and supports that they could use for either institutional care, such as in a nursing home, or homebased, community living, including “home health care, adult day care, assistive technology, home modifications, personal assistance services, respite care, accessible transportation, and homemaker services” (Henry J. Kaiser Family



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Foundation “Focus on Health Reform” 2010a). This portion of the ACA, however, still beholden to market-based approaches to health care, was abandoned when a Health and Human Services analysis could not confirm the program’s financial viability (Harris and Pear 2011). Later, CLASS Act was formally repealed as part of the “Fiscal Cliff” deal made in Congress at the beginning of 2013. For persons living at or near poverty levels, another state-based program remains, through Medicaid, as a potential source of support for homebased community care. The program, known as the “Community First Choice Option,” makes nonmedical services and spending available to individuals making incomes up to 300  percent of Supplemental Security Income guidelines, which amounted to $2,022 per month in 2010 (Henry J. Kaiser Family Foundation “Focus on Health Reform” 2010b). As of July 2015, however, only four states—California, Maryland, Montana, and Oregon—were participating in that program.3 And Then They Can Take Care of Each Other

Such failures in policy simultaneously reemphasize the undervaluing of informal care work and the requirement that middle- and working-class patients and those close to them continue to bear responsibility for covering a bulk of care in home settings (also see Glenn 2010).4 In some cases, this can take particularly imperiling form. One transplant recipient in particular offered partial glimpses into these realities. I first met William, in his late forties and African American, in the solid organ outpatient clinic, where he was just beginning the evaluation process for what would become his third kidney transplant. He’d had the first at age seventeen and the second in his early thirties, both from deceased donors (an important detail I consider later in this chapter). In another interview in his home, he described how he’d been conscripted to serve as a caregiver to his ill mother shortly after receiving his second kidney transplant, even though he was actually in need of care himself: My mother at the time had a nervous breakdown and was in hospital at the same time I had my kidney transplant. And so one of my aunts decided, “You know what we should do? We should have William move in with his mother and then they can take care of each other.” Well my mother has had a breakdown and she’s done electroshock therapy and she has no memory, and so it means I’m going to be taking care of her. They didn’t want to take care of her. There were a couple of people in my life who said this was not a good idea, like my aunt’s husband, my

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doctor, and my mother’s doctor, but my aunts [ . . . ] decided that’s what I would do and so I moved in with my mother . . . and went from having a transplant to taking care of her. Unfortunately for me and my body; I just didn’t take very good care of myself. I wasn’t even aware of that. I was more focused on my mother: when she has her meals, when she needs to go to the doctor.

William, who was living alone at the time, had been called upon to care for his mother, not only in spite of, but essentially because of, his own health status. Even though he and his mother had both kin and friends in the area, others would not—or could not—knit together a sounder web of care for each of them. To consider only its burdensome aspects would offer an overly narrow view of caregiving; indeed, it might fail altogether to capture accurately the experiences of some (also see Casida 2005; Schultz and Sherwood 2008). Many caregivers quite willingly served in this capacity, and some, like Roberta, pointed explicitly to the life-affirming and mutually sustaining effects of their efforts. The fact remains, however, that persons who already are disabled by illness might in effect disproportionately bear the weight of responsibility for “producing health” in US health care as it is currently structured. In transplantation, caregivers also take their place alongside organ donors, who likewise share this status. Situated Donations

After a long morning of back-to-back appointments with members of the kidneypancreas transplant team, Mr. and Mrs. Saiz invited me to join them for lunch in the Transplant Center hospital cafeteria. We fanned out to the different food stations to make our selections and then back to the checkout lanes, which were busy during this noon rush. By the time I sat down at their table, Mrs. Saiz was talking on her cell phone. In a slightly lowered voice, Mr. Saiz told me that his wife wanted to call their son right away to let him know that the financial counselor had said any living donor’s medical costs would be covered under Mr. Saiz’s Medicare insurance. Serving now as both an information hub and an advocate for her husband, Mrs. Saiz, thinking that others might be more willing to be tested for compatibility if they knew they wouldn’t have to shoulder the full medical costs themselves, hoped to spread the news quickly to the rest of their family. The movement of organs between persons has received important critical scrutiny by medical anthropologists, who have shown that coercive outgrowths of global capitalism, including networks of debt (Cohen 1999), fuel transnational circulations and outright commercial trafficking of organs



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(Scheper-Hughes 2002a, b; although cf. Jacob 2012). In these markets, where human bodies and parts become thoroughly commodified, both the personhood and needs of those from whom organs are removed are obscured and subsumed by the personhood and needs of recipients. Lesley Sharp (2000, 2001, 2006) has likewise observed this among deceased organ donors in the United States. I met neither kidney sellers nor brokers in my fieldwork and spoke with few kin of deceased donors, so my data and analyses differ markedly from that of these important critical perspectives, but I do examine here how living persons might become positioned to provide organs or tissues in the contexts I observed. Specifically, potential donors seemed to emerge with greater ease out of webs of care that already enjoyed strong ties and fewer constraints. Thus, networks might be inclined toward or away from living donation, but only in a sense quite different from that found in global organ trafficking. Contrary to my initial assumptions going into the field, primary informal caregivers occasionally do also in fact become living donors to their loved ones in those types of transplantation where living donation is possible. Spouses, so often “default” caregivers, might be the first in line to be tested for donor-recipient compatibility. Despite her many health concerns, even Mrs. Saiz inquired about the possibility of her becoming a living kidney donor to her husband. Other likely caregivers might also seek to become donors: for example, adult children might donate to either parents or grandparents (e.g., Kaufman, Russ, and Shim 2006), uncles to nieces, and siblings to siblings. In stem cell transplantation, outside of autologous transplantation (in which a patient’s own cells are collected, preserved, and then later transplanted back into the same person), stem cells are donated by another living person. Though the national bone marrow registry can be turned to, a patient’s biogenetic siblings, if they share both a mother and father, each offer a 25  percent chance of matching a patient’s human leukocyte antigen (HLA) tissue type—the inherited protein biomarker found on a person’s cells. Finding a living donor among one’s own network is not a prerequisite to transplantation, stem cell or otherwise. But candidates, particularly in kidney transplantation, are told early on in the process that those who receive organs from living donors not only tend to have a shorter wait until transplant but also might have better outcomes than those who receive a kidney from a deceased donor (see Axelrod et al. 2010). As part of the initial evaluation process, patients are routinely asked whether they have someone in their life who might be willing to consider living donation. In light of the stakes involved, patients find they must contemplate not only whether they wish to pursue this

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as a possible avenue toward a transplant but also how they might negotiate this morally ambiguous path. Care in the Asking and Offering

Focusing on what they called the “ethical field of kidney transplant,” Sharon Kaufman, Ann Russ, and Janet Shim observed among recipients a broad spectrum of opinion concerning the asking and accepting or the obligation not to ask or to accept organs from potential living donors (2006, 87). I likewise found diverse opinions among the participants with whom I spoke; asking and receiving and also giving could occupy charged and morally ambiguous positions. This was not always the case. For example, I spoke with one family in which a father had donated to his adult son. As I sat with them in the parents’ home, where they had been convalescing since the surgery, both father and son expressed sound comfort with the transplant and they joked about how they appreciated being able to recover together and be taken care of by their wives. The mother explained that there had been a long history of kidney disease on her side of the family and they all were just grateful that transplantation was available to them today, when past relatives had simply died from renal failure. The stakes were shared throughout this kin group, and a father giving a kidney to his son was treated as a comparatively morally uncomplicated solution. Another patient, with whom I spoke in between his clinic appointments, said quite freely that he had been asking friends and relatives alike to consider donating, although this seemed to be less common. In some cases, as with Mrs. Saiz, a spouse or care partner would put out the word on the patient’s behalf. On the other side of the spectrum, however, a different potential recipient said he would never consider accepting a living donation, even if someone had offered and no matter who that someone might be. A number of those seeking a transplant felt strongly that they would only consider living donation if someone freely and willingly approached them with the offer. They never could ask other people to put themselves through major surgery: How could one ask a healthy person with everything to lose, and with obligatory relations of his or her own, to sign up for such risks? And yet, throughout the process and discussion, it was palpable that a transplant hopeful’s own life dangled at the other end of that potential giving thread. Underlying this working out of the moral-ethical parameters for asking and accepting, are webs of care that variously make living donation a more- or a less-viable possibility.



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Sad and Grateful at the Same Time

Hank (see chapter 3), who had lived in the same small town community for years, had developed many close connections. As his daughter Eliza says, the town has around four thousand residents, and her dad probably knows 90 percent of them. In the early nineties, Hank received a liver transplant after a degenerative disease destroyed the organ. Almost seventeen years later, he was now being evaluated for a kidney transplant. Eliza explained that, at their initial consultation, they were asked to watch a video that explained the kidney transplant process, including the clinical methods for determining donor-recipient compatibility. She also learned that her father has blood type O, which differs from her own. Because his blood type is so common, there are more people on his waiting list than those for other blood types, which would increase his wait time for a cadaveric kidney. She added with a hopeful note that the doctor said that their difference in blood types would not necessarily exclude her as a potential living donor because they now look at an array of biomarkers, and she had not even been tested for compatibility. Nevertheless, despite Eliza’s wishes, she likely would not be as strong a candidate to donate directly as someone with her father’s blood type.5 Word of Hank’s hoped-for transplant had already circulated through the community, and friends had begun offering to be tested for compatibility. Grappling with how to traverse the moral landscape before them, Eliza stands in wonderment at the capacity for generosity beyond their immediate family: We’ve had a couple of friends that have already mentioned that they are O positive and that they would be willing to get tested. And you know, we don’t know. We’re not sure how we feel about that yet. But I guess the way I felt about it, I was just unbelievably, it just kind of almost made me sad and grateful at the same time that somebody would even offer, that’s not even an immediate blood relative. I just, to me that’s amazing, that a friend of your fa- you know, and I think it kind of speaks highly of my dad.

Hank added, I would never ask anybody to do that. I couldn’t. But I found it pretty remarkable that somebody would say, “Well hell, I’d give you a kidney.” (Laura: This might be a dumb question, but why wouldn’t you ask?) Well, I just wouldn’t want anybody to  .  .  . I think if I had to ask they would kind of feel like, “Well geez, I guess I probably should. I know the guy, I’ve known him all my life and all this . . .” and I don’t want people to think that, I guess.

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I asked Eliza whether she felt like she might be in a position to ask people, on her father’s behalf. Pointing to instances in which people asked about her father’s health, she described her initial reaction to the outpouring of support: Initially I sort of felt guilty when they would offer because I was like, Gosh, I hope they don’t think that I’m saying this because I want them to be like, “Hey you should donate because I might not be able to!” . . . But then I thought, I shouldn’t feel guilty because surely they wouldn’t offer if they didn’t want to. And again it doesn’t necessarily mean that just because they’re offering that they would be able to. And I just started thinking how wonderful it was that we had such great friends that would even offer. But I think that if it were me and I were having to be in that situation, I think I kind of understand how Dad would feel. Because I think initially you’re scared, but yet you also, you don’t ever want to impose on somebody else, and you know that that person [the potential living donor] is going to have to go through a surgery and my thought on that is, it’s completely an elective surgery. It’s not like you have to have this or you’re gonna die. You’re just doing it and there are risks involved, I mean no matter what, anytime you have a surgery, anytime you go under anesthesia. I don’t think there would be very many people that would feel comfortable saying “Hey! I really need your kidney. Could you get tested?” It’s sort of a selfish act almost, I think, because you sort of feel like, it’s sort of like you’re saying, “My life is more important than yours.”

And, she added, “If something were to happen to that person then it would be hard for you to deal with.” Eliza outlined the moral complexity of what living organ donation demands: electing to assume the risks of major surgery for donors, a careful dance around gratitude and guilt for recipients, and an implicit weighing of one life against another, all in the context of webs of relations that connect and extend beyond each. Arriving at this multidimensional perspective by way of their previous dealings with transplantation, she pointed out that they had thought deeply about organ donation ever since her father received a liver from a deceased donor, an organ that had given Hank nearly seventeen years of life that he might not otherwise have had. Furthermore, Eliza noted that her dad’s receiving the transplant affected every single person in his family, as well as his friends and every person that he knew; at the same time, the transplant also affected every single person in his deceased donor’s family. For that reason—in a sense, this deep understanding of the ripple effect



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of living and dying—she thinks it would be hard to ask someone outright to give an organ. Between the friends who have come forth and with Eliza as a potential back-up candidate despite having a different blood type, Hank effectively is in the fortunate position of not having to ask. She directly ties her father’s friends’ willingness to donate to his propensity to “give you the shirt off his back.” Just because of the way I see him with his friends, and he’s the kind of person that would do pretty much anything for everybody. He’d give you the shirt off his back. And to have somebody do something like that for you I think is just a testament that, again, you’ve lived your life right. Because if somebody’s willing to do something like that for you, you’ve obviously done something or treated somebody in a certain way or they wouldn’t even offer, because that’s a pretty big sacrifice to do for somebody.

In the absence of widely established common convention surrounding living donation, Eliza turned to a somewhat more well-worn path of attributing this ready cadre of caring friends who would offer up their healthy bodies as living donors to her father’s long having lived his life “right” and with generosity toward others. Hank’s web of care was strong and extensive, comprised of harmonious bonds with close kin and reinforced even at its outer reaches by years of living in goodhearted relations with others in the same small community. Yet, certainly not all transplant candidates who could benefit from a living donation are able to pursue this as an option, owing to circumstances far afield from the moral fiber of their individual personality. In reality, not everyone is surrounded by a cohort of ready donors, and these differences can follow the contours of structured inequalities. Maybe Some Families Have That; I Just Don’t Have That in My Family

William, for example, described a vastly different experience than Hank’s. Unmarried and without children, William had been born and raised in Metrotown. A steady girlfriend and several friends at work, where he primarily drove a shuttle bus, did offer encouragement but not prospective living donation. William explained, I don’t have anybody that I . . . my family has never said anything about that, and I’ve never asked them. [ . . . ] Maybe some families have that. I just don’t have that in my family. [. . . ] So once again, I have to kind

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of look at my life and say, Ok, if it’s a matter of life or death, where am I at? Is there somebody that’s gonna step forward? And if there’s not, then what do I do? I have to step up. I would love it if there was. But I don’t foresee that. And because I’ve had two transplants before, my family just thinks that “Oh, well, if the kidney’s not there, you know, he’ll get another one.” I don’t think they know the history and how long they last and the benefits [of a living donor].

William has a half-sister who is six years older, but she struggles with drug addiction, and the two of them ­haven’t spoken since their mother died some years ago; they have never been emotionally close. His father lives in the US Southeast, and they too have an unsteady relationship, though they do talk occasionally. He has one aunt to whom he is close. While he has a large extended family on both his mother’s and father’s sides, many of whom live in the area and are aware of William’s health issues and transplants, he does not have a supportive relationship with most of them. If he received a third transplant, that kidney, like the first two, would have to come from a deceased donor. William accepts this as simply the way things are and spoke several times about how fortunate he feels to even have been given two transplants in his life; a third would be, as he put it, “the sprinkles on the icing of the cake,” far beyond anything he ever had expected. William acknowledges a difference between those in his kin and close social network and the stories he’s heard of people coming forward in other transplant candidates’ lives, “You hear these stories about people who do these incredibly generous acts for people, but I don’t know if I know anybody like that.” Like both William and Hank, others who commented about a presence or absence of potential living donors often pointed to characteristics of their kinship and social networks. One domain, however, that largely went unevaluated in an explicit way had to do with larger constraining factors, including social inequalities and longstanding histories involving privilege and oppression, themselves powerful shapers of health. Having good enough health and specific forms of stability in one’s life to be able to prepare for, undergo, and recover from the donation procedure are just two important dimensions. Donors must also have the ability to pay substantial out-of-pocket expenses. Although a transplant recipient’s insurance typically covers the medical costs associated with living donation and recovery, the nonmedical costs such as time away from work, added childcare expenses, and travel costs like transportation and outpatient housing must generally be paid for privately. Orientations toward (or away from) living donation, then, are shaped by degrees of entanglement within multiple and interactive arenas of constraint (Inhorn 2003).



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That is, one’s chances that a family member, friend, or neighbor might be willing to donate can be patterned by individuals’ and communities’ past and present experiences of multiplicative inequalities (Mullings 1997) and structural violence (Farmer 2005). For example, researchers have documented less willingness in the United States among African Americans than whites to become organ donors (Boulware et al. 2002a, b; Mocan and Tekin 2007), owing at least in part to mistrust in a health care system in which Black patients historically have experienced mistreatment. Parallels are found in comparative contexts as well. For example, Rhonda Shaw (2010) argues that the greater reluctance among Maori than non-Maori citizens in New Zealand to donate organs must be considered “in the context of inequalities, the long-term effects of colonization on Maori health outcomes and disaffection toward a culturally unsafe health care system” (2010, 143). Thus, having a plethora of living donors at the ready reflects not simply one’s closeness of personal connections to others (though this often was the focus of participants’ explanations), but rather various levels of capacity within larger networks and communities for this very demanding form of “giving.” And How You Repay Them, I Don’t Know

The medical risks, social constraints, and political-economic liabilities associated with living donation add to its morally ambiguous status, which places recipients in the uncomfortable position of not knowing quite what an appropriate form of reciprocation might look like (Fox and Swazey 1978 [1974]). As our conversation turned to the matter of how living donation might play out interpersonally, I asked Hank and Eliza whether they thought their relationship with a person who donated would be changed: Hank: Well, I think it would make that bond of friendship much tighter, knowing that they gave you the gift of life. That’s a pretty precious gift. So yeah, I’m sure it would give you a different . . . Eliza: I don’t think you could ever look at that person the same again. Hank: And how you repay them, I don’t know how. Eliza: And I don’t think you’d ever, you would always know that they did that for you. It would just be so special. Hank and Eliza were not alone in considering the impossibility of reciprocating an organ donation and predicting that it would surely change donors’ and recipients’ relationships in some way. Among the six living donors with whom

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I spoke, I observed a tendency to downplay their act, an effortful circumvention of what Renée Fox and Judith Swazey have famously described as the “tyrannous” aspects of a donated organ (1978 [1974], 383); the donors preferred instead to emphasize their hopes and expectations to return to their own “normal life” as soon as possible after the procedure. Obscuring Living Donors’ Patient Experiences

Clinicians and protocol together assemble layered protections for potential living donors. In addition to physiological screenings, transplant team members take quite seriously their responsibility to screen for any sign that a donor might be proceeding against their wishes. A nurse coordinator who works with living kidney donors described how she and other members of the team can help those who change their mind, for any reason, excuse themselves from moving forward, in a manner that saves face for both donor and recipient. The specific reasons for excluding someone as a living donor are not shared with potential recipients. This leaves always available the option to say that a potential donor has been excluded because they were found not to “fit criteria” (even if the only criteria they no longer fit is willingness to be a donor). But even this panoply of protections for donors cannot completely smooth the moral ground of living donation, and in the end donors and recipients find ad hoc ways to navigate the sticking points of this very particular giving relationship. I observed instances in which living donors in fact actively worked to protect the recipient from feeling that their needs have placed a burden on the donor. One means for accomplishing this was to avoid disclosing the full details of their experiences as a “patient” to recipients. This too, I suggest, is a form of care. I Didn’t Want Her to Know I Was Worried

One clear example of this was offered by Robin, white and in her mid-thirties, who donated blood-forming stem cells for her sister, Jane. Jane and her family had just moved from a northern state to a suburb of Metrotown in order to be closer to the Transplant Center where she would be receiving her treatment. Robin lived in a small, middle-class suburban community in the southeastern United States with her husband, two five-year old daughters, and a teenaged stepson, but she had traveled to Metrotown and the Transplant Center to become Jane’s living donor. I met and spoke with her on a very cold January afternoon. Robin was sitting in a large reclining chair, in a room filled with machines and monitors mostly the same shade of beige as the surrounding walls. Filtering through the space were the beeps and blips of the equipment, mingling with the sound of daytime television, filling screens mounted on the walls of



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the room. She had just made the actual stem-cell donation. Earlier, she had received the last injection in a five-day series of filgrastim, a medication that increased the blood-forming stem cell development in the marrow of her bones, causing the cells to “spill out” into her blood. Twelve units of her blood were taken out of one arm and circulated through an apheresis machine, which collected the stem cells and returned the remaining blood back into Robin via a catheter in her other arm. Now, with the “harvest” complete, the catheters had been removed, and she was resting. Robin’s stem cells would then be stored until they were transplanted into her sister after an intensive round of chemotherapy would have destroyed Jane’s own blood-producing stem cells. Robin’s stem cells would be given to Jane through a central line, and, after two to three weeks, they would make their way into Jane’s bone marrow and begin producing new, healthy blood cells. Another sibling, a brother, had also been tested for compatibility but was not as close a match as Robin. Robin explained that she of course was more than willing to donate this necessary component of her sister’s life-saving leukemia treatment. Although the procedure had not required surgery or general anesthesia, it also had not been a painless, straightforward, or effortless process. Even on the day I met with her, Robin needed to take a break twice from our interview because she was overcome with nausea (I offered each time to end the interview, but she preferred to continue). Logistically, it had been stressful for Robin and her husband to arrange her travel to the Midwest and coverage of daily responsibilities back home, like school pick-up and drop-off for their children—routines Robin normally performed. She worked part-time and had a more predictable schedule than her husband, who was in law enforcement and worked irregular hours. He had decided to take leave from work during the time she would be away from home, but never before had he run the household for such an extended period. Robin explained that she tried not to convey her worries to Jane. There were a lot of stresses on my part but I didn’t want to let Jane know that I was stressed, because she had her own stress going on. I didn’t want her to know that I was worried about how I was gonna get my plane ticket or who was gonna care for my kids because she was fighting cancer. So I didn’t want her to worry about me, so I didn’t want to tell her. So whenever I talked to her [on the phone], I tried to just be positive and like I had it all under control. And then I would vent to other people.

She vented, for example, to her husband and to her mother. But previously, Jane would have been a main confidante. The two of them had long been close, usually talking on the phone three times weekly. They shared much in common;

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both worked for nonprofits, and their oldest children were of similar age. Robin noted that they tended to refrain from talking too much about Jane’s cancer or Robin’s donation; instead, they focused on the quotidian aspects of their lives, even though it could be difficult for each to avoid the subject, which lately was becoming the everyday. And so, to not talk about the normal stuff that was stressing me was hard. And to try not to talk about her cancer was hard. Because she was used to talking to me about the small stuff and she didn’t want to talk to me about the big stuff. Because that was her one relief, was just to talk about which kid broke their cell phone. Or who took a test and got a C. So that stuff helped her maintain normalcy. So we purposely didn’t talk much about the stressful stuff.

These efforts to “maintain normalcy” become a crucial component of preserving ties to the more familiar ground of the way things were before living donation and transplant entered their lives. Robin also expressed a strong desire to not allow the transplant process to change anything about their relationship together, describing her discomfort with creating any sense of indebtedness for Jane. Robin tried to avoid being portrayed as a hero. I think you probably downplay what you’re going through because I don’t want the praise for it, I don’t want the big “thank you’s” for it, I don’t want her to feel obligated to me for it. So I’ve kind of downplayed with her my role in it. She’ll come in and introduce me as the donor or whatever and I try not to make a big deal about it just because I don’t want her to always think she owes me something, or that I’m any more special than me as the sister before, you know?

At the same time, during the actual donation process, Robin had experienced, in her words, “nearly every symptom they listed on the page,” of potential side effects and risks associated with being a stem cell donor. This included a good deal of physical pain, particularly pain in her bones, induced by the medication she was given to stimulate stem cell production. Moreover, on top of the physiological risks and side effects, it had been much more emotionally difficult to be away from her home, children, and husband than Robin had anticipated. Yet out of care and concern for Jane and Jane’s family, in an effort that pivots on wider values working against shared ownership in pain (see Das 1995, 195), Robin continued to try to shelter them from the knowledge that she was suffering. But her efforts were complicated by the fact that Robin was staying with Jane and her family.



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And you know when you feel bad, it’s hard enough when you’re sick being at home, but I’m away from my family and my environment, staying at somebody else’s house, away from my husband and kids and I’m trying to hide that I’m in pain. So I would retreat to my niece’s room and they would think I was just going to bed early. And I had to call my husband and say, “Look I’m in really bad pain, but I can’t tell anybody because I don’t want them to worry about me.” Because I’m doing this for her; I’m doing this regardless of how bad I feel. [ . . . ] I think everybody underestimated the homesickness of it, what it would be like to be in pain and homesick at the same time.[ . . . ] I ­haven’t really shared that with anyone because I don’t think they’ll . . . there really is no way to understand how it felt, how it was, going through pain and sickness like today and being homesick.

Being away from the familiarity of her own home space and geographically disconnected from her husband and children added to both the physical and the emotional pain of Robin’s experience. Living donors like Robin, insistent on maintaining “normalcy” in the face of upheaval, also actively resist the interweaving of suffering into their relationships. Toward this end, she employed the built environment of the house, sharing only partial disclosures of her anguish in hushed phone conversations with her husband behind her niece’s closed bedroom door. This marked a strategic effort to in fact decouple the donation from her connection to her sister. Even beyond the donation itself, her determination in this regard was an expression of maintaining care and love for Jane. The physical act of walling-off a risky moral terrain also reveals assumptions that the moral landscape of living donation is one where suffering is ameliorated, not produced. This notion might be formalized in clinical protocols, but it is instantiated in more everyday contexts. Nevertheless, even though relations between donors and recipients are carefully managed, information and affect can permeate these boundaries. When I later asked Jane to tell me about her and her sister’s relationship as they’ve gone through the transplant process together, I learned that Jane indeed knew of Robin’s struggles. Despite Robin’s best efforts to hide them, their mother had shared everything. Jane explained: Yeah, we’re definitely closer. I consider her to be my lifesaver. I think she feels the same way. She would do anything for me [voice wavers] and this is the, she’s got two five-year-olds at home. So for her to, you know, say “Yes, I’ll be your donor.” But the reality of it is, she is away from her family for ten days. She’s got to arrange for child care, her husband . . .

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works shifts. So who is going to take the kids? When is he going to get them to school? She’s homesick, you know? She didn’t realize that she’d be going through pain with the Neupogen shots and all of that on top of it. And she won’t complain; she complained to my mom and my mom told me [small laugh], but you know she won’t say anything to me. I think that she knows what she’s going through is minimal compared to what I’m going through.

Knowledge and experience can flow via circuitous routes in a web of care. The sisters’ mother, beholden to both daughters, reconnected the lines of communication Robin had tried to buffer. When Robin learned of this breach of confidentiality, their mother again conveyed Robin’s reaction to Jane, who told me, “My sister was like, ‘How dare you?! You weren’t supposed to tell her! That’s why I didn’t tell her!’” But even with this, shared information about Robin’s experiences was only exchanged with their mother’s mediation. I Don’t Want It to Inhibit the Normalcy of Life

At the time of Robin’s stay with Jane’s family, she anticipated the long-run prospects of daily life and relationships upon her own return home. I hope I can go home and go back to normal. I don’t want this praise for this. I don’t want people to say “Oh what a good thing you’re doing for your sister.” I would have done it for a stranger, you know? First of all, how could you say no if you were a match for a stranger, never mind your own family member? So I guess other people kind of put you up on a pedestal, “Oh what a wonderful thing you’re doing.” And again, I don’t want that. I just, it’s extraordinary for me and it’s extraordinary for her, but I don’t want it to inhibit the normalcy of life. Because it wasn’t about what I did. It’s just something that had to be done. [ . . . ] You just keep thinking, it’s short term, and then you’ll be back home, back to normal life. You’ll feel better and it’s for a good cause. And I’m looking at the bag of blood, thinking, “Ok, that’s my sister’s cure. That’s what I came to do.”

Robin, like others I met during fieldwork, grappled with dual competing paradigms: transplantation is an “extraordinary” experience that changes everything, and yet transplantation will not (or rather, must not) alter one’s relationships with others. Toward reconciling these notions, she worked to diffuse any added obligation for her sister by downplaying the donation as a gift to Jane in particular, instead insisting that it was just something that “had to



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be done,” even if it had been a stranger who was in need. In doing so, she normalized the act, insisting on its conformity with more general conventions of generosity, tangible as the bag of blood hanging next to her.

AS I HAVE TRIED to show in chapters 4 and 5, persons straddling the domains of

“patient” and “caregiver” rely upon and care for each other in ways that signal a deep resonance of transplantation within interpersonal webs of kinship, reciprocal care, and mutual moral obligation. As those surrounding transplant hopefuls are drawn forward, whether to provide care or to provide organs or cells, they and their transplant-receiving loved ones must find ways to work out the local terms and meanings of their relations in the context of moving together through this particular means of addressing illness. Our understanding of this moral landscape must also take into account troubled political economic contexts. In the United States, a profit-driven framework for health care tends toward life-saving high-tech procedures like transplantation over prioritizing life-sustaining, quality health care that is accessible to all. This same framework requires the time, labor, and corporeal service of caring loved ones, without sufficient material support for such responsibilities. Many everyday caregivers suffer from illnesses of their own, which might in turn structurally orient them to provide unpaid care. As we saw with William, this can compound in especially insidious ways. It also is possible under these conditions that persons might lack coverage for their own health concerns, even as they assume the unpaid responsibilities of caring for another. Similarly, living donation is regularly covered by insurance, even as basic medical care often is not. And as William again reminds us, even with this coverage, not every person is part of a kin network where living organ donation is either feasible or realistic.

Chapter 6

Transformations in Home Life and High-Tech Health Care

Even as care resonates with claims to its universal qualities in the human experience (Kleinman 2007, 593), caregiving and its particular political-economic contexts in the United States have undergone important transformations over time. This chapter begins by locating transplant-related caregiving within these broader shifts as a way of understanding how it has come to intersect with home life so substantially for those moving to, through, and beyond organ and tissue transfer. In many respects, while it seems at one pass to be a thoroughly new phenomenon, transplant-related care in the home also signifies a sort of coming full circle in a larger historical and political-economic trajectory, where health care in the United States has veered steadily toward a profit-driven orientation. Somewhat ironically, given the earlier parts of the story that I outline, the recent degree to which health care has become a corporatized, for-profit enterprise (Caplan 1989) is effectively pushing much health care back into the lay, unpaid domestic realm. In transplantation, this transfer of care—between hospitals and homes, and between professionals and loved ones—comes into noticeable relief. By examining some of the material and socio-moral implications of this transfer, we can more fully understand the broader significance of such shifts. The Home-Hospital-Home Shift

Notably, until well into the twentieth century, women kin and neighbors largely provided in- home health-related care in the United States (Abel 2000). Although this role was not uniformly shared by women across social class and race, through their experiences of giving care, women also developed a

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level of recognized expertise and authority regarding matters of health, life, and death. Many women not only considered themselves but were also considered by others to be skilled healers and practitioners. At the turn of the century, however, and on into the twentieth, lay women caregivers’ autonomy began to erode precipitously. New developments in germ theory in the biological and medical sciences and technological developments, like the use of forceps and other mechanical medical tools (Davis-Floyd 2003 [1992]; Martin 2001 [1987]), increasingly drew medical care out of the hands of women practicing in homes and toward professional physicians eventually practicing in hospitals and clinics (Abel 2000). Ongoing growth in biomedical power and professional authority, particularly among physicians, hospital administrators, and pharmacists, and overall intensifications of what Michel Foucault (1973 [1963]) has famously called “the medical gaze” came to largely eclipse health care in the domestic, lay realm (Caplan 1989). These changes augmented the rise of a nascent professional health care industry. Further nudging came with the newfound US prosperity after World War II and the country’s emergence as a major military and economic world power. New scientific developments came to be recognized as a national asset worthy of continued public investment, and the medical workforce, for example, increased dramatically from 1.2 million in 1950 to 3.9 million in 1970 (Starr 1984, 335–336). There was a “tilt toward technology” in both attitude and policy, and, beginning in 1946, the Hospital Survey and Construction Act made funding for the construction of new hospitals more readily available (Starr 1984, 348). During this period, too, employer-provided insurance came to be offered as a fringe benefit, which expanded medical coverage to more workingclass families (1984, 373) Within decades still other shifts, following these trends, eventually began to reroute medical care back into the domestic realm, at least partially. This reversal again grew out of political-historical fluctuations. Medicare (the federal entitlement program for the elderly, disabled, and end-stage-renal disease patients, regardless of income and provided that work requirements have been met) and Medicaid (the federal-state partnership program for persons with low or no income) have been key players in the hospital-to-home shift (Cartier 2003). These two major arms of publically financed health insurance in the United States have been the subjects of angst over state-supported medical care, almost since their creation with passage of the Social Security Amendments of 1965. When first conceived, few cost controls were built into the Medicare program. Fee-for-service payments to providers, in which physicians are paid according to what and how many billable services they provide, along with

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a system that reimbursed hospitals on the basis of their costs, offered little incentive to control expenses. Therefore, throughout the industry, if more services were provided, supplies used, tests run, and therapies administered, then greater reimbursement payments and more money followed (Starr 1984, 384–385). Costs had already been increasing prior to 1965, but until that time, costly health care was considered a problem to be handled by individuals and families. Under Medicare and Medicaid, the state assumed a higher share of the burden. Additional reforms soon precipitated from an increasingly conservative political climate set on curtailing public spending and privileging market approaches to social issues; this milieu offered fertile ground for subsequent movements toward both reprivatizing and redomesticating health care (Starr 1984, 417). By the early 1970s, industry anxieties rose over squeezed profits, rising employer contributions to health benefit plans, and increased labor force wage demands (perhaps at least partly owing to workers’ own rising out-of-pocket expenditures for medical care) (Caplan 1989, 1145). The 1980s then saw implementation in hospitals of the “diagnosis-related group” (DRG) classification system in 1983 and the Medicare “prospective payment system” (PPS) in 1984. Considered a hospital management tool for controlling costs, the DRG approach divided diagnosable illnesses into categories, to which standardized lengths of hospital stay were assigned. Through DRGs, then, hospitals came to be reimbursed according to the “standard” length of stay associated with a patient’s primary diagnosis. Coupled with this, under the PPS, Medicare paid hospitals a flat rate per case, regardless of the actual full cost of a patient’s hospitalization. Notably, outpatient services were not held to the same PPS payment restrictions on inpatient services. Carolyn Cartier summarizes, “Three general problems of the DRGs—under-treatment, avoidance of patients whose DRGs do not account for their illness, and the availability of care in other institutional settings, especially nursing homes—all coalesce to move patients out of hospitals more quickly. [ . . . ] The PPS incentives, which shorten the length of stay, can force a shift of subacute care services from hospitals to nursing facilities and the home” (2003, 2296). In the wake of these developments, then, hospital lengths of stay decreased, and in response home health care agencies, medical equipment dealers, and clinics and urgent care centers all grew to meet the new needs of patients (Cartier 2003, 2295–2296). The rise of managed care approaches in the following decade further hastened what Emily Abel calls “dehospitalization” by placing additional pressure on hospitals and providers to reduce costs and shift responsibilities to unpaid caregivers. The legacy of these 1990s health industry changes is that “patients



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arrive home sicker as well as quicker, increasing the intensity of services family members must deliver” (Abel 2000, 257; also see Glenn 2010). But dehospitalization has not actually marked a mirror reversal of earlier changes. For instance, dehospitalization can take place right in the hospital. Costcutting contributes to chronic understaffing in many inpatient settings, and family members regularly perform caregiving responsibilities right in the hospital to make up the difference (Jones and Egan 2000, 77). Another recent trend in the highly competitive hospital care market is renovation of hospital rooms to feel more homelike. One indicator of this, belying its interconnectedness with recent waves of corporatization in health care, is the ubiquitous advertising of homelike birthing suites in television, billboard, radio, and print advertisements.1 The health system of which the Transplant Center is a part, along with others in Metrotown, likewise participates in this “homing” trend; many times I passed billboards announcing to expecting parents the availability of these sorts of amenities. At the time I conducted my fieldwork, the Transplant Center employed a model in the treatment of some of its transplant recipients (most often those receiving blood-forming stem cell transplants) where patients and their care partners stayed together during the most intensive post-transplant period in an inpatient setting intended to more closely resemble a private, furnished apartment suite than a conventional hospital room. In stem cell transplantation, this period regularly spanned more than three months. Unpaid care partners who assume responsibility for close post-transplant monitoring effectively reduce the demand for paid clinical labor. And reflecting a climate of shortened hospital stays, these types of spaces are promoted in part for the idea that they more closely resemble the settings where the majority of post-transplant recovery will take place and thus can ease the transition from hospital to actual home (Greico et al. 1990; McLane et al. 2003; Schmidt-Pokorny et al. 2003). Here and elsewhere, a great many resources have been put toward bringing “the home” (or at least certain elements of the home) into the hospital, but, across diverse types of solid organ and stem cell transplantation, patients and caregivers alike spoke about their eagerness to leave the Transplant Center and return to their own homes with their favorite chairs, their own beds, their own kitchens, and their own or their partner’s cooking. Redomesticating Health Care

The complex environment of the domestic home in many ways contrasts sharply with hospital spaces. Physical factors such as the size, layout, condition, cleanliness, and climate of a home; emotional aspects accompanying

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patients’ assumptions that being home should entail a return to normalcy; and other dimensions like stability or instability, the presence or absence of substance abuse, addictions, mental illness, abuse, violence or neglect, and the financial status of a household – all can shape home-based care in powerful ways (Guberman et al. 2005, 266–268). I observed persons adeptly and expertly handling tasks in their homes that medical professionals would otherwise perform in clinical settings. Support from a member of the Transplant Team was always available via telephone, but the physical separation of homes and hospitals could also leave very ill patients and their caregivers vulnerable to sudden crises like bleeding, infections, or respiratory problems. According to Emily Abel, “Nineteenth-century women struggled to retain jurisdiction over skilled medical care, but caregivers today complain about being entrusted with responsibilities that far exceed their capabilities” (2000, 258). At home, unlike in the hospital, professional support is not necessarily available at the push of a call button (Guberman et al. 2005). Moreover, the domestication of subacute care comes at a time when there is rather little structural support for households that already are struggling in the wake of market deregulation, increased privatization, the gutting of public sector services, and the “flexible organization of production, hiring, and management systems” (Cartier 2003, 2292; also see Glenn 2010, and Martin 1994). Furthermore, and at least in part due to a rapidly fluctuating labor market, kin often reside at great geographical distance from one another. Indeed, many participants’ parents, siblings, and adult children lived far away (see discussion in chapter 7). In spite of and along with these contemporary constraints, the present return of care to the home occurs through the blending of home life on the one hand and high-tech health care on the other. Complicated and expensive medical technologies now accompany patients to their homes upon discharge, requiring patients and family caregivers to quickly learn skills and tasks that otherwise had been performed by nursing staff in hospitals. Under what Christine Milligan (2003) has called “the spatial manifestation of care,” as patients’ health care needs increase, rooms in home spaces are transformed by increasingly ubiquitous medical equipment and practices (also see Williams 2002). Boxes, Boxes, Boxes!

Well before a patient receives an organ, even before being admitted to a waiting list, medical equipment and practices can utterly rework the dwelling spaces of persons experiencing organ failure. Bernard, in his late sixties, and Arlene, in her early seventies, both African American, made this clear. They described



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the extent to which Bernard’s pre-transplant dialysis regimen had usurped their home spaces and altered daily life for the retired middle-class couple, who much preferred a full social calendar and active engagement with their children and grandchildren. Instead of going to a hemodialysis clinic several times a week, Bernard used a home automated peritoneal dialysis system. By day, he held in his abdominal cavity a solution of salts and glucose. His peritoneal membrane tissue served as the agent by which wastes and extra fluid continuously filtered into the solution. Each night, before going to sleep, he connected via a surgically placed catheter to a cycler machine that exchanged the waste-filled fluid with clean. The next morning, he would disconnect, leaving fresh dialysate in his abdomen until it was time to restart the process again before bed the following night.2 Bernard had to be connected to the machine for ten hours per exchange, noting, “If I don’t hook up by a certain time, then it’s going to carry me over in the morning and I’m gonna be late getting up.” Thus, Arlene added, when entertaining friends or family, “We have to kick everyone out early enough to where he’s not connecting at twelve midnight or two in the morning.” The bedroom where Bernard performed his exchanges had become offlimits to anyone but him and his wife, because the space must be kept as sterile as possible. With the catheter providing a direct line to his abdominal cavity, he was at heightened risk of developing dangerous infections. Anyone present, including Bernard, when the catheter was exposed had to wear a mask, and, as Arlene noted, “We’re always wiping stuff down with a bleach solution as we were told.” Bernard in fact did develop peritonitis, an infection of his peritoneal membrane, once after his catheter had touched his own t-shirt during preparations for a fluid exchange. Arlene used the word “horrifying” to describe the fact that such a seemingly innocuous, accidental infraction of sanitary protocols could bring such dire consequences, and the experience reinforced the couple’s careful management of Bernard’s exposure even to close family members: “So you can see how you’ve got to keep people away, and everybody coughing and sneezing, it’s like, ‘Back off, don’t get too close to him.’ So with some of the grandchildren we always tell them, ‘If you’ve got the sniffles, don’t go near Grandpa!’” The couple also had to refigure the use and meaning of their home because they now must devote considerable amounts of space to storing the many boxes of dialysate Bernard has to use each week for his exchanges. Arlene explained the significance of this: I don’t know if you’re familiar with the amount of solution that goes with the home dialysis, but every month we get about thirty-five boxes

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and so I always say [to the delivery person] “Leave them there.” But then we have to bring the boxes and put them, you know, it’s just a daily thing and it hogs up. . . . Almost every room in the house is just dedicated to some sort of medical something. . . . When they bring the solution in they have to, see we’re on the second and third level. They have to use an automatic dolly because they have to bring them up and then sometimes it’s raining and the dolly is dripping oil. I just feel like it would be a blessing to not have to live with these boxes and to have our carpet look like it’s clean again. And see, this is a three-year thing; it’s been about three years he’s been on it. It can kind of get to you. [ . . . ] And of course the delivery people, they’re very nice people, but as I say, boxes, boxes, boxes! It’s a little problem but it becomes big after a while.

Home dialysis patients and caregivers held in common the changed uses and meanings of their home spaces, in terms of needing to be home or another suitable place at certain times for exchanges, needing to keep potential sources of infection at a distance, and finding ways to store the necessary supplies. Another married couple, Donna and Frederick, she in her early sixties and he in his early seventies and both white, described how they tried to strategically repurpose the bulk of Donna’s provisions: When a new shipment came, Frederick regularly stacked the boxes of solution carefully to the left and the right of their toilet. That way Donna, weakened by renal failure, could use them for support while sitting down and getting up off the commode. Bedroom spaces, too, which in recent decades have come to symbolize an ideal of leisure and “escape” in the United States (Arnold et al. 2012), might be given over to necessary medical regimens, such that these spaces could no longer offer respite. Arlene, for instance, felt that her husband’s safety and health in many ways hinged on her own attentiveness to the dialysis machine, even during regular sleeping hours: It might be because I’m a light sleeper and the machine is not silent. Well, Bernard is closer to the machine than I am and he can sleep through anything. And I’ll hear the machine going and then I’m lying there listening, and it kind of makes it hard because it’s interfering with my sleep. And what can I say? It’s not anything he’s doing. And if I go to another room to sleep, he’ll never hear the machine when there’s a problem. Because it’s a very sophisticated machine and if something’s not quite right it gives a signal. Well I’ve laid there sometimes listening to him not waking up and wondering, “When is he gonna hear this machine?” [ . . . ] I guess eventually it would work itself out, but that worries me.



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“So the whole process is just very draining,” she added. Akin to a demanding houseguest who has overstayed a welcome yet cannot be asked to leave, the machine’s presence overlaps with other longstanding aspects of the couple’s day-to-day living. This demanded certain accommodations (Heinemann 2015), including Arlene’s sleepless vigilance as an embodiment of Bernard’s care needs (Buch 2013),3 that were becoming taxing over time. Arlene was certain that Bernard would understand if she removed herself periodically from her watch, in order to get some much-needed sleep, but this detachment does not present itself as a real option, with the stakes involving no less than Bernard’s health and safety. In reconciling medical care with life-as-usual, home spaces are repurposed and redefined; a home’s inhabitants likewise assume altered ways of going about their day-to-day activities in relation to each other. Bernard and Arlene expressed their willingness to put up with such challenges, inconveniences, and risks, under the expectation that they would only be temporary, if necessary, steps along a path toward transplantation. But transplantation’s promised offerings of rejuvenation and normalcy do not always come to quick or full fruition (also see Mishel and Murdaugh 1987). Bringing Home the Hospital

Upon returning home, daily life—crystallized in things like car keys, kitchen tables, and steps up to a bedroom—can become juxtaposed against still more home medical supplies and ongoing curtailed mobility. If they hadn’t already done so during the pre-transplant phase, then soon after transplant home spaces can take on characteristics of a clinical space, as seemingly every piece of furniture, porcelain figurine, and framed family picture is matched one-for-one by bags of tubing and syringes, boxes and bottles of medication, sterile bandage packs, and durable medical equipment. Home from the hospital only a few days now, after a readmission for a persistent infection related to the liver transplant he received more than four months ago, Marvin still moved about with some difficulty. His wife had already returned to working during the day. Marvin told me ahead of time that he could not easily answer the door to their split-entry home, so after ringing the doorbell I paused only to listen for a “Come on in” and then climbed the stairs to their living room. Greeting me there, Marvin, white and in his late fifties, looked older and frailer than his actual age. He was seated in a cushioned recliner chair surrounded by an IV pole and several five-gallon-sized white plastic bags that quite literally were filled to overflowing with medical supplies: tubing, syringes, wound dressing materials, medication vials, and

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pills. A walker was stationed beside his chair, and he used it for necessary trips to the bathroom or kitchen. I sat down on the couch across from him, noticing a large thick black photo album on the bottom level of the coffee table in front of me. As we talked, Marvin told nostalgic stories of growing up in a nearby neighborhood, of driving trucks for a local steel distributor for more than thirty years, and of the ties he still maintains with former coworkers, even after he had to retire for medical reasons. He described his experiences with polycystic kidney disease, his earlier kidney transplant, and now his more recent liver transplant. At one point, Marvin paused to invite me to open the photo album on the table and to flip through to find the pictures taken during surgery, upon his request, of one of his diseased kidneys once it had been removed from his body. In fact, it hardly looked like a kidney at all, resembling more an oversized loaf-shaped mass comprised of pink and red globulous tissue. I was struck by how concretely these photos captured the intensely medical domain of surgery, yet shared album space with pictures of family gatherings and fishing trips. They were among several analogous examples. On the dining room table behind Marvin was a row of sleepy floral bouquets, green plants in foil-wrapped pots, and half-mast shiny Mylar “Get Well Soon” balloons slowly swooping and swaying in the ceiling-fan’s breeze. This materialized expression of well-wishes from family and friends created a backdrop framing this area of the house as though a number of the basic elements of Marvin’s hospital room had been packed up and taken home with him on his day of discharge. With a home care company supplying the remainder of the medical equipment, it all blended with the furnishings and arrangement of his living room to emplace the melding of hospital with home. Even though Marvin was home with not one but five tubes in his body at the moment—tubes to administer IV antibiotics, to draw blood from, to drain infection—and had been in and out of the hospital numerous times in the past months, he much preferred these arrangements to the alternative of hospitalbased care. When I asked what a typical day was like for him, he spoke to the situatedness of the rhythms of his daily medical practices within his home context: I get up at six, do my IV treatment—that’s two bags at a half hour each, so there’s an hour right there, so that’s around seven [o’clock] or a little after. I fix a little breakfast [ . . . ] I clean up after myself so when my wife comes home she doesn’t need to have a big mess sitting in the kitchen [ . . . ] I take a shower. Usually get on the computer and make sure the



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checkbook is balanced; go outside to get some fresh air. [ . . . ] Right now, I feel like I don’t have mobility; I do, but the tubes feel like they’re poking me if I bend over too much, but I try to do things around the house. [ . . . ] Some days I sit around the house, or my sister might call to go do something. [ . . . ] After lunch I watch TV; by two I need to be back on the IV machine. [ . . . ] So for two-and-a-half to three hours in the afternoon, all I’m doing is sitting here as if I’m in the hospital, but I’m not in the hospital. And I’d rather be doing it here than in a hospital bed. Home health care sets it up and shows me how to use it; then they come back and draw my blood and make sure I have the supplies I need. This is my area. The chair’s comfortable, and I just sit here sometimes. My last treatment’s at ten at night; I’m half tired and dead anyway for the day and so I’ll plug it in, fall asleep, hear “beep beep beep” and I’m done and it wakes me up.

In transplantation, refinements in medical equipment, surgical procedures, and drug therapies, have made feasible the very idea that recovery could take place largely outside the hospital setting, with guidance from home care professionals but otherwise largely under the care of lay persons (Eilers et al. 2005; Glazer 1990; Guberman et al. 2005). The complexity of Marvin’s routine is not, however, necessarily unique to transplantation. Some iteration of this routine would be familiar to a wide swath of persons recovering from intensive biomedical procedures or struggling with ongoing illness. Likewise, a primary informal caregiver must often maintain paid employment outside the home, such that lay caregivers regularly must juggle competing demands in both paid and unpaid responsibilities. Shifting Intersections of Gender and Care

Very often women negotiate these competing demands. Caregiving continues to be associated with “women’s work,” even as vastly greater proportions of women now work outside the home. Indeed, statistics kept by entities such as the National Alliance for Caregiving and AARP document from one year to the next that women caregivers consistently outnumber men. While such figures are not compiled specifically for transplant caregiving, researchers have noted the social expectations surrounding women who care for transplant patients. Canning and colleagues (1996), for instance, observe in their US-based study among heart transplant patients and family caregivers that “caregiving is a role that is both expected of and more likely to be adopted by women in our culture” (1996, 606).

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Although Marvin did receive disability benefits, his wife continued to work full-time for the necessary additional income and for her own health insurance. She went to work by five o’clock each morning and tried to be home by threethirty. Marvin did what he could so that his needs added as little as possible to her load, trying to make sure, for example, that she did not come home to a mess. He also performed most of his own medical cares. His wife helped with dressing changes when she was home, but his brother and sister-in-law, who lived a block away, most regularly helped with wound care in one area of his body that Marvin himself could not easily reach. In fact, beyond this small example of Marvin’s own efforts to care for himself and his brother’s added assistance, in my observations it was not uncommon for men, too, to be conscripted into lay caregiving roles. This especially was the case when women were transplant candidates or recipients, and they had men in their lives who were spouses or lovers—transplant caregivers often by default. Those instances in which men served as dedicated caregivers, sometimes even to the surprise of patients, substantively interrogated assumptions about who provides care and how caring roles and relations come to be reckoned in the domestic sphere. Jane, for example (introduced in chapter 5), had not anticipated that her husband would so readily embrace this position: Jane: A definite change is with my husband. He is not the caregiver in the sense that he just comes to appointments. He wants to flush the [IV] line. He gives me Neupogen shots, and everything, he wants to do everything that the nurses are doing as much as he can, so that’s been different. Laura: And has that surprised you in any way? Jane: A little bit because he’s usually kind of squeamish, but he sat through watching the bone marrow biopsy the last time I was in the hospital and had one. And I was surprised at that, but he just wanted to be there to hold my hand. And I’m like, “I don’t need you to hold my hand,” and “I’ve been to these,” and I’m very independent. And he’s a little more, you know, wants to be there to help so I let him. I mean, I’m happy to let him do the line4 and fix the vancomycin5 I have to have at home and he sets it all up [in the portable machine that we put the tubing and medicine through] and stuff like that. And it’s kind of surprising, but . . . he’s happy to do that. In fact, he’ll say, “Do you need some help?” and I’ll say “no.” And he’s right there and he’s doing it anyway, so yeah that’s been really nice. [ . . . ] Granted, sometimes it’s tough. He has a lot to pick up when I’m in the hospital, or, [he asks] “How come you’re taking another nap?” And he’s not a



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big reader, so he’s not read a lot about what caregivers go through, so it’s just kind of been, well, learning as we go, adapting as we need to. Instances in which men were caregivers are not simply gender role reversals, nor are women passively acquiescing to men’s assumption of care. As we see with Jane, the shift involves a relational negotiation among agentive subjects who alternately uphold and disassemble gendered assumptions. Men capably provided care with attentive, emotionally attuned empathy, along with practical consideration of logistical matters and the clinical bodily needs of their loved ones. Some also articulated that, by taking their caregiving responsibilities seriously, they were traversing the borderlands of gendered norms. For instance, Rob spoke explicitly about his position in relation to the traditionally gendered nature of caregiving. He noted with some disdain that other men, particularly those in Mary’s family, seemed to look down on him for taking on these duties so willingly and completely: [There’s] a lot of testosterone. For some reason, men just . . . I have a difficult time. [ . . . ] I just am not going to play their little contest. “Oh I’ve got a story that’s better than your story.” Or, “I can do this better than you can do that.” I don’t, I don’t play that game. [It] is a lot of just testosterone. [ . . . ] It’s not manly to do that [caregiving], and I’m sure they feel that way because of what I’m doing, [but] you do it. You’ve got to do it.

Describing their concept of “emergent masculinities” medical anthropologists Marcia Inhorn and Emily Wentzell observe that “manly selfhood is not a thing or a constant; rather it is an act that is ever in progress” and that “men must act as men in different ways from moment to moment and in different contexts” (2011, 803). These notions offer a useful framework for understanding some of the intersections of gender with caregiving. As health care moves into domestic contexts that differ markedly from their nineteenth-century counterparts, men, as well as women, do gender and care in ways that merge with and sometimes collide with received wisdom about what men and women are like and what men and women do, particularly in the home. Stereotyped manliness, compared and assessed by Mary’s kin group, was but one among many ways of being that Rob felt he must navigate as a caregiver to his wife. His caregiving might stand in tension with conventional masculinities that hold caregiving as an unmanly practice. But as we saw in the prologue, even more difficult to negotiate was his concern for Mary’s recovery and well-being, cast against a sense that this was the trade-off for the marital intimacy they once

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had enjoyed. Their bond remained strong but had become engrained in the care Rob could provide, rather than in terms of playfulness or sexuality. Yet Rob had also found comfort in this new role; he celebrated Mary’s progress, noting her increased mobility, even as he expressed worry that as her health improved she would rely on him less and less. Rob’s caregiving was situated within a context of hegemonic masculinities (Connell 1995), but to him of greater consequence were the stakes involved in his wife’s recovery and his evolving position in relation to her throughout the process. Personal, Professional

Shifts toward home-based high-tech biomedicine are facilitated partly through the training, by clinicians, of lay persons to develop the knowledge and skills necessary to do the job. Marvin performed many of his own transplant-related clinical tasks. However, while patients often did assume these responsibilities, in most cases, especially when home medical care needs were particularly intense, one or more loved ones generally performed them or at least provided close assistance or monitoring. Without the support of his wife, brother, and sister-in-law, Marvin quipped, his medical team “wouldn’t hesitate to tell you ‘Well, you’re going into a home.’” These concerns were recounted often by participants, who generally did prefer home-based care over clinic and hospitalbased care and decidedly over longer-term care in a nursing home.6 In lieu of institution-provided care, loved ones become at once part personal and part professional, part family member and part health care worker. One notable example was Betsy’s mention that, in the earliest days of her postpancreatic islet cell transplant recovery at home, every member of her family, including her three school-aged children, had to learn vital aspects of her care needs: “When we first did the transplant, I was on very tight blood sugar control, hoping that would help them [the islet cells] heal and not stress it too much. It had a tendency to drop my sugar really, really low. So we taught our kids how to test mom’s blood sugar, how to use the glucometer, and made sure they knew how to call 911. I get really slurred speech [when my blood glucose level drops] and they can tell.” Betsy’s home had become a site of high-tech health care, where clinical and domestic place and practice converged, and family members became trained clinicians, merging the glucometer and her children’s knowledge and use of it. This new, hybrid domain for the day-to-day enactment of social relations could understandably be troubling for Betsy, her husband, and her children. Others whom I met likewise offered evidence that the performance of clinical cares in the home by loved ones could infuse relationships with complex and



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sometimes contrasting sentiments that must still conform to the moral bonds of relatedness and commitment. They Don’t Care if She’s Hurting. I Do.

Rob and Mary, for example, wondered whether they ever would transition again from nurse and patient back to husband and wife (see prologue). During one conversation, I asked them about the various people who have helped with Mary’s clinical needs. Rob and others in Mary’s network of lay care providers— even Mary herself—came to be quite knowledgeable and capable in their ability to perform procedures like ileostomy bag changes and wound care so that they themselves were positioned to effectively troubleshoot equipment problems and even train others. This knowledge and capability notably developed out of a very sensitive, personal, and attached form of caregiving. Mary began, Everyone had to be trained by the nurse, except [my friend] wasn’t trained—Rob trained [her]. But my sister and my mom were both trained how to do it. And they all helped [her] and I knew how to do [  .  .  .  ] it because I was sitting and watching them every day, so I could walk somebody through it. You know, actually, that’s what I have to do is my ostomy bag when I go in the hospital, because the nurses don’t know so I have to walk them through it.

Rob added, When she went through for her transplant—her ostomy is located in a tough place—they were changing it out every two to three hours. (Mary: It was bad.) I said, if you need me in here to do this, I can. She would lay there and just cry. There was a certain amount of, I guess you would call it detached professionalism, that they don’t care if she’s hurting. I do. (Mary: Well, it’s just a matter of taking time. They would just rip the bag off where Rob would use his one finger, and then go another finger, and another finger, and another finger.) . . . Not just that, but it’s a matter of like—we’re having some tough times right now with the bag. It’s just driving me up a tree, and I can’t get the bag on and I know it’s because she’s getting better, her flexibility is getting better [ . . . ]. The more flexible she gets, the harder it is to keep it tight. And I’m racking my brains trying to figure it out, and I’m so frustrated with myself because right now I’m only getting the bag to last a day. And I just can’t stand it. It’s like it’s kicking my ass, and I don’t like it. I just can’t, I’m not smart enough to figure it out. I work on it, I try something different. I lay in

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bed and I think about it, but I do care if it’s hurting and I do care how long the bag lasts. And like I said, I’m not doubting the nurses. I never, I’ve always just called it a detached professionalism. You’re pretty much trained to do that. And that’s good to some extent, but it’s also not, to some extent. (Laura: because it takes a little extra time?) [Rob nodding] And they don’t have that extra time.

Mary continued, When I was on [the transplant inpatient unit], one of the nurses, I just fell in love with her and [ . . . ] while she was doing the bag changes, the bag changes would take four or five, sometimes six hours, I mean, they were long. (Rob: And then they would leak and they would have to turn around and start all over.) Peel it off and start back all over. They literally, literally got a Ziploc bag and cut it up and put it over my stomach. And that one would last a day. They were in there every day, pulling tape off my stomach every day. They finally had to put me on a Fentanyl sucker. I was on Dilaudid, I was on Vicodin, a little Fentanyl sucker, and [turning to Rob] what else was I on for pain? I was on three or four different kinds of medicine and none of it would take the pain, or even touch that. And now when they put the tape on me it makes little red marks. You can touch my stomach and it leaves little red marks because it is so sensitive now, because of what they’ve done, what they were doing, a bag change almost every day there.

Rob’s dedication of patient effort, careful consideration, and creative innovation, literally lying awake at night to strategize about how to overcome the practical challenges of ostomy bag changes and alleviate some of his wife’s suffering, stands in contrast to what he calls the “detached professionalism” of nursing staff. Mary did remember one nurse, who would take the time to “sit and talk a lot” and who devoted more time to bag changes, but this was an exception to the norm they encountered during their hospital stay. The differences in Mary’s various experiences with care resonate with Annemarie Mol’s (2008) distinctions between a “logic of care” and a “logic of choice.” In a logic of choice, patients are consumers and health care is a transaction; in a logic of care, care is “an open-ended process” of interaction, in which persons “try, adjust, try again” (2008, 22). If patients are more likely to experience a logic of care when that care is provided by loved ones or only exceptional professional staff, then it is under conditions shaped by larger systemic orientations toward a logic of choice and its corollaries in domains where professional health care



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is practiced. The couple’s experiences are thoroughly situated within the overarching context of US health care, where professional efficiency responds to cost-conscious industry standards in nurse-to-patient ratios. Furthermore, moral obligations in care are not confined only to unpaid care among kin, neighbors, and friends; they also hold sway in paid care as well, as Elana Buch (2013) demonstrates. After a great deal of trial, error, and “tinkering” (Mol, Moser, and Pols 2010) with Mary’s ostomy changes, in fact paid professionals eventually were able to find at least a slightly more workable solution, through the use of a less biomedically conventional, more low-tech material that notably could be found in most US homes—the resealable plastic storage bag. This observation offers an important reminder that a greater involvement of informal caregivers does not entail a purely one-way movement of biomedical care, expertise, and technology out from the hospital and professional clinical domain into the home and informal caregiver domain (Jones and Egan 2000). Rather, of course, the domains remain interactive and movement between them, multidirectional. Rob and Mary found themselves knowing better how to perform some of Mary’s cares than did clinicians, and they were ready to take their own “home-grown” brand of health care with them into the hospital. At the time of this particular interview, whenever she was hospitalized Mary still had to walk clinical professionals through the particular ostomy bag change process that had been worked out. Earlier, Rob at one point had asked nurses if they “need me in here to do this” during Mary’s painful ostomy bag changes. His expertise was rooted in a very time-intensive, personalized, and attached form of care that has been cultivated in the home, where persons often with great effort try to bring together the moral obligations of kinship—to love, to care, to “be there” for one another—with clinical demands. Out of this, care in the domestic realm emerges as a “borderland practice,” taking shape as “creative and unstable activities” that are reinvented in ongoing ways in homes and communities (Mattingly, Grøn, and Meinert 2011, 352). Creating Sanctuary in Lingering Peril

Over time, recipients regain their strength and need less active assistance from loved ones. Once-ubiquitous medical equipment and supplies eventually fade from the home’s interior landscape. Yet, while clinical demands generally do recede, in reality they never fully disappear, and in a very real sense transplantrelated care becomes engrafted onto home life. Post-transplant living equates to living with and managing a chronic illness. In particular, most recipients can expect to take not only immunosuppressant drugs but also other medications to augment the immunosuppressants’ effectiveness, and still more prescriptions

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to address their side effects, along with any additional health problems a patient might have. Even as recipients and loved ones celebrated all that transplantation has given them, temporal distance from the procedure did not lead to entirely carefree living. The Panic Will Never Leave

Barry, white and in his sixties, had received a heart transplant fourteen years ago. Before sitting down for our first interview, he and his wife, Angela, who identifies herself as Mexican American, ushered me through their lamp-lit living room and over to a wooden dining room table. There were none of the pieces of medical equipment or get-well-soon cards and balloons delineating their home as a conspicuous “hospitalized” space. Even Barry’s pill organizer had been tucked out of sight. The couple, however, together continued to use their home spaces in particular ways to accommodate Barry’s ongoing medical care needs. The immunosuppressant medications Barry takes to prevent his body from rejecting his transplanted heart make him highly vulnerable to even common contagions. The ordinary cold might be an uncomfortable inconvenience to most, but it put Barry at risk of serious health complications. Angela talked about the level of vigilance she felt must always be kept: The panic will never leave. And I mean, we are fourteen years out. It doesn’t leave! It doesn’t leave you! You know, and when he gets a cold, I panic. Is he going to be okay? [ . . . ] And anybody that knows us, knows you do not come over to our house if you have any, the sniffles, sneezes, and we’ve had people have to call and say, “I really apologize, I cannot come over because I have a cold.” And I understand, I say, “Bless you! Thank you for not coming!” Because it’s just too dangerous for him.

Angela, including herself among those who might expose Barry to these dangers, emphasizes, “You have to take care of yourself. I know they tell you a thousand times, but you really have to take care of yourself, because if you get sick, how can you help them?” Taking care of oneself as a transplant caregiver has a double valence for Angela because, in addition to paid employment, she is active outside the home in other ways, including leading their church’s children’s choir. She finds these practices offer periodic refuge from her position as a vigilant sentinel for Barry’s health concerns, even fourteen years after his transplant. Although this is one way of taking care of herself, Angela also notes that her activities outside the home expose her to sources of contagion, particularly children with “all of their little runny noses.” Her efforts to maintain her own well-being through stress-relieving activities simultaneously made it



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difficult to avoid occasionally becoming sick (and contagious). Angela’s needs in this sense could become pitted against Barry’s. When I asked what happens if she does “catch” something, Angela emphasized, “You have to stay away from each other! You literally do because you know, I’m fearful that I’ll give him something.” Anthropologists have looked to houses across cultural domains for insights into the moral dimensions of daily life, kinship, and care among diverse groups; they argue that houses, as malleable structures, are capable of revealing at once the harmony, the tensions, and the changes in social relations that are enacted within them (Bourdieu [1972] 1977; Carsten 1995a, b; Carsten and Hugh-Jones 1995; Gillespie 2000; Lévi-Strauss 1982). During my visit with Barry and Angela, I came to learn that the couple made practicable Angela’s need to seek respite from caregiving duties, by maintaining a perpetually separable house which simultaneously served as a health haven for Barry. Barry explained, “Right now we’ve got one extra bedroom. We’ve got the bedroom upstairs and then my room, my whole TV room is in the basement, and you’ll notice we don’t have a TV up here. We’ve got a big screen down in the media room downstairs.” The couple had arranged the spaces within their home to serve as a backup quarantining system. During times when Angela might be contagious, each lives in a separate area, with Angela in the extra bedroom and Barry sleeping on the couch in their media room, what has come to be “his” room, downstairs in the basement. Fixing and eating his own meals there, too, Barry could safely wait out Angela’s’ communicable state. In the imagination, creation, and maintenance of physical delineations, the house became a tool for reconciling care needs. Angela could balance her role as wife, caregiver, and watchful guard against threats to Barry’s post-transplant health, with her own needs outside of these capacities. Their home simultaneously served as a private haven and afforded its residents the power to exclude (Milligan 2003, 461). It enabled the couple to accommodate the risks to Barry’s health posed by their household’s necessary connection to the outside world and by the need for day-today activities to carry on, even in the face of ongoing overlaps in medicine and home life. Transformations, Constraints, and Concerns

The political economies in US health policy and a profit-driven health care industry continue to shape the practice of biomedicine, such that it now takes place in the context of everyday home life, where life also carries on with cooking, sleeping, spending time together, attending school, or working in paid

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employment. With little individual choice but to accommodate this transfer of care,7 patients and those close to them rearrange spaces, lives, and relationships to continue making their way through transplant, but not all aspects of the hospital can be packed up and resettled on the day of discharge. Patients and their care partners usually are eager to return home. Once there, home health nurses and nursing assistants do regularly visit, and patients and their caregivers are free to call their transplant nurse coordinators with questions or concerns. All the same, the responsibilities of transplant-related home care can and do place ongoing formidable demands and constraints on people and relationships. Weaknesses in the safety net of this system are especially pronounced for those who start with fewer resources as well as for those who do not have family or other loved ones on whom they can rely for round-the-clock care.

Chapter 7

Revealing and Reframing Kinship and Care

Because of the magnitude of health considerations that must be handled outside the clinic, an absence of concrete support can in fact be considered a contraindication for transplant. If it comes to light during a prelisting evaluation that a patient may not have sufficient caregiving support, then members of the transplant team—particularly social workers—often try to help foster and strengthen caring ties, rather than rejecting the patient outright as a possible transplant candidate. The team might help by either encouraging patients to think more broadly about their potential caring resources or facilitating difficult conversations with family members around issues of care. In most cases, patients and loved ones can stitch together care support in creative ways. But even with the best efforts, some might still encounter lacunae in caregiving that simply cannot be well-patched. This is a particularly precarious position to be in, and the complete lack of a dedicated caregiver can seriously jeopardize the entire endeavor. One transplant social worker described the following circumstances: I’ve had a few other people that live in a vast city like Metrotown, and they have nobody. [ . . . ] They have a friend at work, [or] they have a child at home, but that’s about it. They don’t, you know, don’t socialize, they don’t surround themselves with others. They just kind of go to work and do their thing, and they have to have a heart transplant and they don’t have anybody, or their child isn’t able to do that because they don’t have the resources to provide that level of care.

These observations bring into relief a wider milieu that assumes individuallevel responsibility, even for social connectedness, and provoke further

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interrogation of what undergirds the social production of care in the United States today, in transplant or otherwise, and how that might translate into a deep reservoir of support for some and a paucity for others. Examining the ways in which bonds of kinship and care—both their overlaps and their disconnections—can be revealed and reframed in the transplant process allows a wider context in which to discuss transplantation. As patients and loved ones encounter cracks and fissures in the imagined ideals concerning these bonds, they press onward often by creatively rearranging kinship and care (and gender as well) while drawing on wider webs of relations, including clinicians, friends, coworkers, and neighbors. Webs of care that extend outward, to be sure, can offer a wider array of possibilities for tending to the clinical demands of transplantation while simultaneously accounting for realities of life outside the clinic. These improvised reworkings can turn heavily on issues of geographical distance and fraught family relations. But more deeply, I argue, they also are forged under a presumed self-sufficiency and boundedness of an idealized nuclear family, coupled with a largely eviscerated welfare state. Furthermore, reworked relationships are situated within an overall restructuring of US health care to increasingly lean on unpaid care outside clinical settings and are entwined with larger problematic structures that determine access to highly specialized medicine. In these contexts, when particular forms of caregiving become necessary for survival, contemporary permutations of disconnectedness—including both the urban anonymity described by the social worker above and the rural isolation I describe through a later case example—can quite directly become a hazard to one’s health. By looking to these matters, I open a window onto important considerations for developing public policy that takes care as a collectively shared concern. Troubled Ideals and Expanded Relations

Many patients were faced with dilemmas created when vast geographical distances separate one’s home from the Transplant Center. This was the case for Jane, whom I’d first met in a treatment clinic room where bone marrow and stem cell transplant patients typically go for therapies associated with their regimens. She was there on this particular day to get an infusion of medication, and had not yet received the store of blood-forming stem cells donated by her sister, Robin (see chapter 5). Jane was white, in her forties, married, and a mother of three children: one just out of high school, one just beginning high school, and one in elementary school. She had worked primarily in the nonprofit sector, in arts education, but her husband had a long military career that



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provided their main source of income. As we sat and talked in the treatment room, she described their family’s dealings with the fact that there had been several hours travel distance between the Transplant Center and her family’s home two states away. Because of the distance, a daily commute was impossible, and they needed to find a more durable long-term arrangement for the intensive chemotherapy, stem cell transplant, and post-transplant monitoring in the weeks and months to follow. Jane explained: We just moved down here [a few weeks ago]. [  .  .  .  ] Moves are difficult anyway. You don’t want to leave your friends, the kids don’t want to leave their friends. Fortunately, the military packed us. So we had that to not worry about, although we had to sell a house. We had to find a place here to buy on top of that. There was a six-week separation when I was here in the hospital and my family was in [the northern US state where we had been living]. And meanwhile we’re trying to figure out how we’re going to move down here. Once I got back to [the town where we had been living], I was there for a couple of weeks with the chemo treatment and then in the hospital for a week and then back down here. So the move was a challenge, but we just took it one day at a time. What else can you do? And you know, we’re here. We still have boxes to unpack and that’s just an ongoing process. And on top of being sick, having the kids worrying about their mom, moving, trying to get my husband’s orders down here, it was a big, big challenge. But you just do it.

During Jane’s earlier six weeks of treatment, their two sons had stayed in their prior home town with a family who had two boys the same age. The four boys were friends, the families had shared carpooling duties, and the father in the host family had been one son’s wrestling coach. Their daughter stayed with Jane’s boss, who was “like a second mother to her,” Jane said, adding with a small laugh, “. . . and her husband is very strict and my daughter is afraid of him. So I figured that would be a good [arrangement].” Jane said she was in awe of the help they’d received from others: “It’s just been amazing, where on one level, one day you’re just friends to carpool and the boys play together. Or they’re on the same baseball team. The next thing you know, they’re taking them in for weeks at a time, shuttling them around wherever they need to go. It’s just an overwhelming . . .” Still, their daughter in particular had struggled during their time apart. Jane explained: After the six weeks I was here and she was there it was really tough on

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her, I think, emotionally. And I couldn’t see five months of that, never mind she is . . . still a teenager, who likes to go out and do whatever. And we had a couple of instances during the six-week time that she really, well, she got grounded. And it’s hard to ground your kids while you’re here and [they’re] with somebody. Even though you know you trust that adult completely, it’s still not ideal.

Out of their arrangements, the need arose for Jane, her husband, and their children’s host families to find ways to coparent through both support and discipline. Although Jane had decided to ground their daughter during her first six-week round of treatments, the host family had to enforce the grounding. Though necessary, such arrangements did not fit easily within dominant middle-class values that hold nuclear families independently responsible for child rearing. In addition to being class-based, these tenets intersect powerfully with social race, too, as ethnographers have observed since Carol Stack’s classic 1974 work, All Our Kin. To Jane, the situation was not tenable for the long term, and it prompted a different approach to the next leg of the journey, when she needed to return to the Transplant Center for more chemotherapy and a stemcell transplant. Jane and her husband decided that it again would be best for their sons to remain behind until they could finish the school year. This time, however, they decided their daughter should finish her senior year requirements early so that she could graduate and move with them to the Metrotown area. Jane noted, “It took some time convincing her, one, that we didn’t think that she could handle it emotionally, and [two,] we needed her here with us. So that’s the way it panned out, and so that will be a great help to have her here.” This approach, emerging out of a multicontoured terrain, bridged the gulf between current realities and normative assumptions concerning the American nuclear family as both the locus of parenting and the locus of informal caregiving. Jane and her husband’s new plans, in fact, addressed multiple dilemmas. Their logic played out, for one, in a context of limited family leave for working spouses. Jane’s husband took some leave from work, but the lack of close social connections in their new community made it difficult to find ready sources of backup support. Old enough to drive and help with household tasks, but young enough by middle-class standards to forgo paid employment, their oldest child was socially positioned to fill in. Their effort to parent a teenager in the midst of upheaval could simultaneously more fully incorporate their daughter as a source of extra help during Jane’s treatment and recovery. A not-yet-fully-adult child could remain with her parents, even as her parents needed to devote most energies to a mother’s health. Although this creative social repositioning of



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kinship and care helped to address some problems, it troubled other normative renderings. For instance, instead of finishing her senior year with her friends and enacting culturally scripted forms of teenaged rebellion against parents holding on to their last vestiges of child-rearing, Jane’s daughter instead unceremoniously finished high school early and helped care for her mother. The fact that her daughter needed convincing to execute this plan highlights this as a less-than-ideal situation, especially for her daughter. With Jane’s example, we see that nuclear families, even those with sufficient means and overall amicable bonds, cannot always accommodate the spectrum of shifts in care needs at every point in ways that fully adhere to prescribed ideals. Beyond distance from the Transplant Center, other tensions and breakdowns likewise can prompt a turning toward more extended webs of care, in moves that resonate loosely with Angela Garcia’s observations that “forms of care emerge, not in spite of, but through experiences of loss [and] marginality” (2010, 194, emphasis in the original). Recall Blaine, for example, who had become the sole primary caregiver for his adopted daughter while her birth mother—and Blaine’s wife—continued to struggle with drug addiction. He was certain that his wife would be unable to reliably care for their daughter when the time came for Blaine to have a transplant. Thus, for the duration of his surgery, hospitalization, and outpatient recovery at his parents’ home several hours away, Blaine decided to place their daughter under the care of a friend and that friend’s wife, who also had an eight-year-old and an infant of their own. Blaine trusted fully that his daughter was under the best care arrangements possible, and this was repeatedly confirmed in his nightly phone conversations with her. When I asked how he had selected the person with whom their daughter would stay, Blaine replied, “I just chose them because they seemed the most reliable and like the people that would get her to school on time and everything for me. And they help her out with her homework and you know, they are just really good people and good parents.” Such acts of care for Blaine’s daughter—reliably getting her to school on time, helping her with homework, and overall being good parents and good people—likewise were acts of care toward Blaine. And through it all, he told me, he has come to consider this friend to be a brother to him. These feelings of closeness—even relatedness—to the person caring for his daughter, warrant earnest consideration. Kinship scholars have long insisted on the flexible nature of relatedness (Holy 1996). Rayna Rapp (1987), for example, argued that kinship should be understood as a product of innovation in the face of contestations and transitions. Persons who willingly and successfully stand

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in for kin during times of crisis might indeed become kinlike. These observations, too, index the limits of the bounded nuclear family ideal. New relations indeed can come to light when care is not assumed to be the sole responsibility of close kin; however, innovative arrangements that work against powerful ideals can go hand-in-hand with ambivalence and disappointment that the circumstances are not otherwise (e.g., Yarris 2014a, b). Blaine had decided to make the arrangements for his daughter prior to sharing these plans with his wife. He knew that it would be difficult for her to accept: “We just talked about it after I placed her [our daughter] there and then she kind of could see my point of why I didn’t want her to stay with her because she might relapse or something.” Although Blaine felt she ultimately could see his reasoning, motherhood remains a potent moral category in dominant forms of US kinship systems. Just as it was not ideal for Jane’s teenaged daughter to have to care for her mother, it also was not ideal for a mother to have her child cared for by someone else (cf. Stack 1974). Beyond their immediate interpersonal circumstances, Blaine’s wife’s limited ability to care for their daughter thus stood outside of expectations that women—particularly mothers in this instance—are and ought to be reliable and nurturing caregivers (Ginsburg 1998 [1989]; Glenn 2000; Kohn and McKechnie 1999). Caring Masculinities

In transplantation as elsewhere, essentialist paradigms linking women and care do not fully depict the texture of lived realities (see Kramer and Thompson 2002). While women in the United States, including those employed outside the home, still do commonly assume unpaid domestic caregiving responsibilities in what Arlie Hochschild called “the second shift” (2003 [1989]; also see Gerstel and Gallagher 2001), men in the United States are now far more likely than in recent pasts to do the same. As transplant caregivers, men could both reflect and refract received wisdoms about how care should be practiced, and about who ought to do the caring. In addition to Rob (see chapter 6), another caregiver in particular—Jacob—helped me to understand this. On the day I met Jacob, he had already settled in for an extended stay on the solid organ transplant inpatient unit. Two days before, he had made the forty-five-minute trip to the Transplant Center from the small rural midwestern town where he lived. Jacob had arrived not as a patient, but rather as a caregiver to his long-time on-again-off-again girlfriend. She had received a liver transplant two years ago after her liver ceased to function following years of heavy alcohol use. She was back in the hospital now, he said, because “she had fallen off the wagon.”



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Jacob, in his fifties and white, already had begun to make plans for his friend to come and live with him, even though they were no longer romantically involved and he had been dating other women. He anticipated that some of the logistics could prove challenging. For example, she would need help with her multiple medications. He would need to get her to and from her appointments, even though he himself had lost his driver’s license after accumulating too many DUIs (citations for “Driving Under the Influence”) on his record. He worried about her risk of falling, and he would need to help her improve her nutritional intake because “she mostly eats frozen food, if anything.” He would also have to work to keep her from drinking. Likening alcoholism to a prison and certain that his friend would be fearful of what life outside those walls would look like, Jacob nevertheless was determined: “She’s gonna buck and wanna get out,” he was sure. This situation, however, had marked her most direct admission that she needed help, and he felt that he needed to be there for her. Indeed, Jacob explained, he was about the only person in her life on whom she could rely. This lies deeper than everyone thinks. Her mom and sister live [on the West Coast]—her sister lives with her mom. I called them the last time she was sick. She’s been [living here] for twenty-two years, and I’ve known her for about eighteen years, maybe twenty years. They’ve never come out to visit her. The doctor asked me, “What do you think is really wrong with her?” I said, “Well, you are the doctor!” She’s an alone person and got depressed. And the more you get depressed, the more you get depressed.

Vexed by the doctor’s inability to see it, Jacob zooms in on some of the fractures and fissures at the intersections of illness, kinship, gender, and care. In his assessment, the root problem is his friend’s hurt over a mother and a sister’s longtime failure to care not only for her but also seemingly about her. Without their love and support, Jacob’s friend was “an alone person.” I was struck by this designation in light of the fact that Jacob himself had been a part of her life for two decades. Indeed, when I asked Jacob if he considered his friend to be a family member, Jacob seemed almost indignant at the question. “Yes, she’s a family member—I wouldn’t be doing this if she wasn’t family.” This generative claim to kinship in the context of care sits alongside Jacob’s certainty that his friend’s broken ties to her mother and sister make her “an alone person.” But it also resonates with anthropological findings in other US contexts where conventions of relatedness can be reworked even as they are employed. Through ethnographic fieldwork based in San Francisco, Kath Weston (1991)

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for example found that gay and lesbian men and women alternately critiqued and upheld heteronormative ideologies about biogenetically based kinship by redefining “family” as those people you can rely on, who offer both emotional and material support, who share a past, and whose ties are unconditional and resilient, even in the face of conflict. While Jacob considered his friend “family,” he also was keenly aware of the discordance between their arrangements and larger expectations about who should care for whom. He pointed to a moral etiology to his friend’s illness; like Grace from chapter 2, Jacob felt his friend’s post-transplant return to drinking was a recent precipitate of a long-time crisis of motherly care. Feminist medical anthropologists Marcia Inhorn and Emily Wentzell (2011), citing Matthew Gutmann (2007), argue that the longstanding exclusion of men from studies of gender can have the effect of leaving received notions of stereotyped and essentialized forms of masculinity unchallenged. Clearly, much more intentional research on caregiving by and among men is needed (Kramer 2002, Thompson 2002). But my own observations serve as preliminary, additional indications of a productive, even if still tentative, reckoning between masculinity and caregiving, such that caring can no longer be assumed the exclusive duty or domain of women. As we talked, Jacob wondered aloud whether it might be awkward when he needed to help his former girlfriend bathe or shower, especially given that he had been dating other women. But as he inventoried the preparations he would try to make over the next few days in order to care for her once she left the hospital, it was evident that he was readying himself to align his daily life with her needs. Jacob anticipated that there would be conflict in their future together. When I asked him how he thought he might handle the difficult times, he said he would just try to talk some sense into her and not get angry, turning to a brand of masculinity that rejects violence in conflict, prescribing how to avoid a brawl while still saving face: “If I get in a fight with someone, all it proves is whether they’re a better fighter than me, and I get bloody and the problem is still there.” Pivotal Roles and Absences

The pivotal role played by caring loved ones is perhaps highlighted most powerfully when they are unexpectedly absent or vanish altogether. If a patient has identified a care partner, but the transplant team is unconvinced of the level of commitment, then the team might require the care partner to formally and explicitly agree, even in writing,1 to uphold their caregiving responsibilities toward the patient. Nevertheless, arrangements can still fall through, sometimes even at the last minute and in spite of promises made to help a



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person through their transplant process. For example, Marguerite, a white woman in her mid-fifties, recounted to me the fact that she suddenly was left with no one who was willing or able to provide ongoing informal care for her during the stem cell transplant she had received as part of her cancer treatment some years ago. Neither of her parents was living, and her only sibling was a brother to whom she was not particularly close and who, in any case, lived far away. Marguerite was certain that he would not have agreed to come and stay with her or even regularly look in on her during her treatment and recovery. She had lived in the Metrotown area for most of her life and enjoyed kindly support among a few close neighbors, but she felt that she could rely on them only occasionally and not extensively. Prior to the transplant, Marguerite had made arrangements with a friend who had agreed to become her care partner, which would have involved especially close monitoring and assistance, particularly during the immediate post-transplant period. Marguerite felt that the expectations had been made clear from the start, but in the last few days leading up to her scheduled treatment, when she tried to finalize their plans, the friend backed out of the arrangement, concerned that after all she might not be able to do this. A hospital social worker came forward to fill this caregiving role to the extent that she could, which offered some amelioration. Because of staffing, workload, and professional training that all insist on necessary limits and boundaries, the social worker could, however, only provide a certain amount of assistance. She certainly could not remain by Marguerite’s side at all hours, let alone provide ongoing home-based care. Nevertheless, given this promise of extra effort on the part of the social worker, Marguerite proceeded toward transplant. Both separately told me that they had developed a close relationship through the experience and remained in touch over the years. But, without a close personal advocate who could help to troubleshoot complications or provide ongoing support and encouragement at all hours, Marguerite recalled feeling fearful, neglected, and alone at several turns throughout and following her long hospitalization. In many ways, Marguerite told me, she suffered most greatly through both the difficult emotions and the medical complications that arose during the inpatient phase of her treatment. Compare this to the experience of Annette (see chapters 4 and 5), another stem cell transplant patient, whose family members organized themselves to provide around-the-clock care even while Annette was still an inpatient. When I asked Annette’s sister, Roberta, how much time she had spent in the hospital with Annette, Roberta assuredly replied, “Every day,” adding, “We didn’t want her [to be] alone, ever.” Roberta arrived daily at eight o’clock in the

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morning and stayed all day while Annette’s husband was at work. He returned to the hospital between three and five o’clock in the afternoon and stayed until another of Annette’s sisters, Lynn, arrived. Lynn slept on a cot in Annette’s room every night, dressed each morning and got ready to go from the hospital to the elementary school where she worked as a teacher’s assistant, leaving only after Annette’s husband came at six-thirty or seven. On days when he arrived earlier than that, Lynn might have time to drive home from the hospital to shower and change her clothes before work. Annette’s husband then stayed until Roberta’s morning arrival, and the routine began again. Annette, in turn, had very positive things to say about her time in the hospital, the staff, and the experience overall. She felt her needs were met, her fears soothed, and her travails kept to a minimum. Much of the credit for this goes to the continual presence of her family caregivers, who were immediately available to offer comfort and assistance and could call for a staff member whenever needed. Rather than framing Marguerite’s suffering and Annette’s contentment simply in terms of their relative individual absence versus profusion and quality of kin relationships, these comparative examples starkly reveal the caveats of a systemic reliance upon unpaid informal caregiving. Such a system can, in fact, exacerbate suffering for those who simply do not have such resources at the ready. When It’s Hard to Find Somebody Who Cares

Clinical personnel often go above and beyond, doing what they can to work with patients who lack care support from family or friends. I realized this more clearly during a conversation with a nurse, Cate, in her mid-twenties and white, who worked with both adult and pediatric blood and marrow stem cell transplant patients. In addition to social workers, I learned, nurses likewise encounter instances where their professional lives entwine with those of patients and loved ones (also see Buch 2013; Fitzgerald 2008). Cate described areas of both overlap and disconnect between relatedness and webs of care: I’ve heard from patients and families—especially family members after a loved one died—that they feel that the hospital was a second home to them or that the nurses or staff were like a second family to them. It’s because of the long time that they’ve spent in the hospital; it just takes so long sometimes, that they’ll spend months in the hospital. Especially if the city they live in is far away, they’re totally uprooted from the support system they usually have and so they don’t have it here and so we try to . . . I mean it’s not like we can do everything and be there for them



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all the time or anything but whenever we can, as a staff we try to support them and get to know them as a person so that if we can help them in some way, either just letting them vent a little occasionally or whatever it takes.

Cate could recall instances in which she developed especially close relationships with patients or family members, but even the most compassionate clinicians are beholden to the limits posed by heavy patient loads and full daily clinical schedules. As Cate notes, they cannot fully stand in for loved ones. Furthermore, bound by laws regarding medical decision making, next-of-kin, and confidentiality of medical information, the official bounds of their engagement are ever-present. Cate described some of the more difficult instances she had encountered in which bonds of kinship—systemically positioned as the assumed locus of care—were stretched by distance or tattered by alienation. Recalling cases in which she and her colleagues waded with their patients as well as they could through crises involving care, Cate explained: I remember one patient in particular who seemed to have no one. He’d kind of alienated himself from his family, whether it was his fault or not, but he just had no one. Never had visitors, never had family, and he lived in Metrotown. It’s not like he was from some far-away place. And I think it was a situation where his daughter would have been legally his next of kin, [but] she was far away and we always had to do consents over the phone and stuff like that when he wasn’t able to give his own consent. And in that type of situation, you just do the best you can. And you deal with calling, even though they’re not really there and you try to explain what’s going on and they have to blindly consent and trust that the health care team is doing what’s needed for the situation, so that’s hard.

Cate discussed other situations where a patient’s next-of-kin might legally be their eldest son or daughter, but the youngest sibling happens to be the family member who is always present, offers the most in-person care, has the most health knowledge, and understands most fully their loved one’s health status. In the opinions of Cate and her professional colleagues, that person would be the best to give consent, but their professional opinions do not always mirror family dynamics. It’s the older person who is in California who is still holding on to that next-of-kin status, who wants to be the one making the decision even though they have no idea what is best for their family member. They’re

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so far away from their situation. So in a situation like that, we can’t do a whole lot. We can encourage them to think about making that person who’s closest to the situation next of kin, but if it’s going to cause a huge family rift, there’s not much you can do about it and you just try to inform everybody like that older child that, “This is what’s best; why don’t you talk to your younger brother about it ’cause this is what we recommend.” But you can’t force them to make a decision.

The quality and closeness of caring relations are not shaped solely by family dynamics or individual personalities. Rather, care relations interact with the constraints built into the very contexts in which one lives and seeks care. Furthermore, while crises in caregiving can emerge in formal clinical settings, they can emerge outside the clinic as well. In the more hidden spaces of the private domestic sphere, however, clinicians are not readily available to augment support when it is lacking. Home care nurses and other professionals of course regularly are deployed for clinical visits in the home. But patients who live alone, especially, can experience long stretches of profound seclusion even in the depths of grave illness. At an Organ Transplant Reunion, I met one liver recipient, in his fifties and white, whose experiences represent some of the disquieting gaps that can be present in one’s overall web-of-care and how that can make for a bleak path through transplantation. In a conversation prompted by his hearing about my research, he described to me how he had become very ill while waiting and hoping for a transplant. He was divorced, lived alone, and his sister who lived some miles away was his primary caregiver. He had needed to leave his job because of his illness, which was especially difficult for him, he explained, because he was a “people person” who thrived most readily in the company of others. He eventually became so ill that he was unable to leave the house by himself yet was not sick enough to be hospitalized. Meanwhile, winter had set in, and the weather began to consistently prevent his sister from being able to make daily visits, let alone to take him on the outings he so tremendously craved. He described the immense feelings of isolation that he endured all that long winter. Although he managed to survive that period and had done well with his transplant, he said he wouldn’t wish that kind of loneliness upon anyone. My new acquaintance commented on neither his divorce nor its timing (whether it took place long before or during his illness) or its possible relationship to his health. The most salient overarching message in his description was not that his suffering indexed a failure of persons or even of personal



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relationships but rather that it was the product of an entire ecological context. His story further exhumes the implicit public expectations that sociality is an individual’s responsibility and that kin almost exclusively are responsible for subacute care. Isolation is all but a “given” in this milieu, when one becomes too ill to work or leave one’s house, during an especially brutal winter, in a context where both physical and social distance separate neighbors and kin. This story also sheds light on the consequences of what Joan Tronto (2006) has called “privatized caring,” where assumptions that care is a private, rather than public, concern give rise to these very sorts of gaps. Impromptu Resolutions

Gaps in care do bring to light tattered family bonds, but I contend that they also reveal the precarious standing of a system that relies so heavily on the capacity of families to provide care, on patients who lack kin care to find alternate means, and on clinicians with increasingly limited professional time and resources to shore up the fractures. Under such conditions, privations that grow within the interstices might be met only through ad hoc responses—sometimes by fellow patients who likewise were ill. The difference between thriving and suffering could hinge on chance encounters and other happenstances far beyond patients’ individual control. Services are especially liable to fall short of meeting patients’ needs when professional resources are scaled back in the interest of profit margins. The following example illustrates how one woman, an elderly Spanish-speaking patient, fared under a system where maximizing profits and cutting costs have become implicit core values. Although she had Medicare insurance coverage, she still faced immense barriers to receiving even basic medical care, let alone access to transplant services. I learned of this woman’s story via Gabriella, one of this study’s participants, who came to know her because they both attended the same dialysis center. Acknowledging the second-hand nature of this account, I relay it here as an extended interview excerpt, using Gabriella’s own words. She began, It just so happened that the lady that was sitting next to me, I knew she was Hispanic from the get-go, [though I’d] never heard her talk. . . . And it just occurred to me one day, . . One of the nurses came in, and she was trying to tell her something. And I [said], “Do you want me to translate for you?” And they [said], “You speak Spanish?” and I was like, “Yeah.” And [the woman] was like, “Oh my goodness, you speak Spanish?” and I’m like, “Yep, I do.” You know, I told her my whole history, where

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my family is from, stuff like that, and she was really happy. And . . . I thought I had a bad case of kidney failure and stuff like that. But she really is not well-off at all, because on top of the barrier of the language, no one ever told her, [ . . . ] not one time, that she had the choice of asking for a transplant, instead of having to go through this for the rest of her life. She didn’t know that. She’s like, “No one ever mentioned that to me. No one tells me these things. My son can only read so much in English and translate to me in English, but other than that . . .” [And] the technicians, they don’t do what she asks, like she’s been trying for the longest time to tell them that “when you tape me back up”— because they have to put gauze on you to stop the bleeding, because they put that heparin in you so that you don’t clog while . . . the blood is cleaning out [ . . . ] So if you don’t put the pressure on there the way that you’re supposed to and tape it up . . . you’re going to bleed everywhere. And so, when they do it to her, because she’s also an elderly lady and her skin is a little bit more delicate, when they tape her up with that paper tape and she pulls it off, not only does she have a hard time trying to pull it off, but it also pulls off her skin. So in order for that not to occur, it’s easier for her if . . . they fold up the end [of the tape] and add a little so that she can [slowly pull it off] inch by inch. So I started telling the technician, “She wants for you to fold the end, if you could please fold the ends for her.” And [now] she can say “Hey look, this lady’s hurting me!” Now I can tell the lady, “Hey, you’re hurting her now. You’re doing something not right.” And so they call on the head nurse to come over and help out and stuff. And you sometimes need it, because . . . those technicians, you don’t go to school for that, that’s on-the-jobsite training. [ . . . ] And she doesn’t have any help . . . getting around either. [I feel] so bad because I don’t have a car of my own and I would be like, “I would help you to your appointments,” because she can’t even go to her appointments. And that is the saddest part of it all because she’s got really bad glaucoma. . . . Like the transportation, she gets free transportation [but] all they do is drop her off at the door. And see, the thing is that she’s blind and she doesn’t know how to speak English. So for her to go in there and ask what, how do I get to this person? You know, there’s no way for her to communicate with anyone. And it’s like she’s not seeing the right people. . . . The only nephrologist that she sees is, I think they come like once a month to come talk to you there at the dialysis center and other than that, that’s it. And the



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nephrologist doesn’t talk to her because he doesn’t speak Spanish. And there’s no translator there on site. Well except for me, I’m the only one that’s been translating for her. [ . . . ] She lives with her son and he barely makes like $300 a paycheck and then, what she saves for Medicare is just, you know they’re struggling and it’s like a really sad. . . . After I told her about [the option to try for a transplant], I said you should apply for that. So he [her son] finally got the social worker to go over there and fill out the application. She just needs to fill out some of the questions and then she needs to give the paperwork to her doctor and the doctor needs to fill out the rest. There’s a social worker there at the dialysis center. She’s there, from Monday through Friday, and if you need any questions or need any help, she’s there to help out, but like I said, she [the elderly woman] didn’t know [about the social worker]. No one communicates with her, no one tells her anything. I knew there was another person here that spoke Spanish, but they never set them together, which I never understood either. So it’s like, “Well you guys should just keep her here next to me. And if you have any questions or if she has any questions I can let you know  .  .  . but it just doesn’t seem right that she can’t communicate with you guys.” And they get frustrated because she’s trying to, you know, she’s trying to signal to them what she wants. And they won’t listen, you know? Plus, she’s such a grandma, she is like my, it could be like me saying no to my grandmother and I would never do that. I would help my grandmother to the end.

The dialysis center Gabriella and this woman attend is part of a large for-profit franchise network that prioritizes keeping costs low and increasing financial gains. The scenarios Gabriella describes highlight some of the ways in which patient care consequently is compromised: centers are run primarily by minimally trained, poorly compensated, overstretched technicians; the availability of skilled nursing and social work staff has been stripped to a bare minimum; and translation services are not reliably offered on-site. The result is a very bleak and uncaring form of medical care, where requests for even the smallest considerations—like folding the end of the tape over for less painful removal later—go unnoticed. These constraints further overlap with a context of barriers and challenges beyond the dialysis center, too. Notably, the woman Gabriella has befriended cannot attend all of her appointments, for example, to address her glaucoma.

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Her son works full-time and is not generally available to help in this capacity; the household subsists on poverty wages, and she relies on the free transportation service, which only drops her off in front of the clinic without an escort to the doctor’s office, despite her blindness. She cannot ask passersby for directions because of language barriers. And even when she does see her health care providers, she is not presented the full range of treatment options, including transplant. There is a social worker on-site at the dialysis center, but she essentially had no access to the social worker’s services. This case illustrates a reprehensible breakdown in the delivery of medical care, even when a patient does have insurance coverage. While Gabriella’s presence promises to markedly improve her friend’s life, she can only offer limited assistance. Even this partial support came about only because of their fortuitous assignment to dialysis machines that happened to stand side-by-side. It is notable that Gabriella, likening her dedication to her dialysis neighbor as something she would do for a grandmother, relocates her caregiving within the familiar bounds of kinship obligations. This, like the examples of Jane and Blaine from earlier in the chapter, demonstrates that the circumstances of transplantation—as a path that demands much from wayfarers—can bring persons together in ways that likewise held potential for the creation of new relationships and the recasting of already existing ones. But Gabriella’s remark that she would help her grandmother (and by extension, her friend) to the end, said almost in passing, also points to a larger instantiation of powerful assumptions that kin rightfully fill in the gaps left by an ongoing compression and receding of professional caregiving. The taken-for-granted holds that patients will be cared for by kin or other relations of comparable significance, who will be able to dedicate the time and resources needed to provide such care—without pay or other material support—and that it will be largely up to patients to arrange for care from certain categories of persons. All these expectations resonate with moral values concerning the obligations of kin, but they also expose vulnerabilities in the context of a health care system that relies so heavily on a presumed availability of private individual connections, in a historical moment that otherwise often is not conducive to a ready reservoir of care. And what of those instances where obligations and expectations are not upheld? In the case of Jacob, we saw an example of tremendous innovation and creative kinship practices, aimed at providing care for his friend. Here, where kin obligations are left unmet, gendered forms of caregiving can in turn become productively reworked. But with Marguerite, we find that even as persons do find creative and innovative ways



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to address some of the dilemmas presented by a more tattered web of relations, pieced-together webs of care do not always hold. Each of these realities belie the mythical qualities of the idea that American families are self-sufficient, bounded, independent units. The realities also expose the precarious reliance of current health care models in the United States upon this ideal, which clearly does not always mesh well with real life. We find this, even as participants simultaneously rely on and uphold dominant kinship ideologies about what certain categories of kin ought to do or be in relation to one another. When lay care support is inadequate, patients often suffer. Pre-transplant evaluations and protocols account for this by mandating the presence of nonhospital caregivers. This accounting, however, can have a two-pronged effect: first, inadequately supported patients might be steered away from transplantation, which is problematic in its own right because this translates into unequal access for those already disadvantaged; and second, those patients who do receive transplants are left vulnerable to fraying piecedtogether webs of care, forged in this particular neoliberal moment in US health care and history.

Conclusion

I conducted the fieldwork on which this book is based during a time of vast shifts and new developments in medicine, biotechnologies, and their deep infusion throughout social life. Organ and tissue transplantation, indeed, is widely held as an icon of these areas of rapid change, both in popular imaginings and in scholarly critique. Yet, even as it is set apart as a peculiar area of medicine, akin to the material of science fiction, fueled in ongoing ways by futuristic imaginings (see Sharp 2006, 2014), transplantation simultaneously is interwoven with the thoroughly quotidian everydayness of social life. As I have shown throughout these pages, patients’ and caregivers’ movements to and through transplant are animated by interpersonal moral leanings within myriad and complex relationships. These relations comprise interwoven webs that extend ever outward through bonds of sociality, obligation, and care, which are sometimes upheld and other times not. The relations also are thoroughly situated within a larger political economic milieu that structures home life and health care alike. From this vantage point, transplantation can be considered a case study, in a sense, that lends itself to introducing broader insights about how we handle infirmity in the United States and to offering lessons on how we might better do so. She Was Surrounded by Family

It had been some time since I had last seen Grace and Kevin, and I decided to call one day in the early spring to get back in touch with them. Kevin answered the phone with his signature genial voice and seemed glad to catch up, but he did not wait long to say, “Well, you know Grace passed in January.” This was the first I’d heard, and I was deeply sorry to learn of it. They had relisted Grace for another small bowel transplant because her first had stopped functioning, and Grace did get the second transplant. Without a stomach—it had been removed some time ago—the team had to leave some of the previous bowel in so that they’d have something to attach the subsequent one, but, Kevin explained, the drain line was not able to suction enough. “She had a leak,” he said; eventually infection spread throughout Grace’s body, and she became septic. Kevin had been able to get the family up to the Transplant Center from their homes in the South. Grace’s dad, her older sister to whom she was closest, the children, and the grandchildren all arrived in time to see her before

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she died. She was surrounded by family and was alert, he said. She told them all that God called her name, and a few breaths later she passed. It was a good death, he added, a beautiful death, and when he goes he hopes his death can be as good as hers. Kevin told me he knows that he’ll be able to join her again someday. And he said that it was good to know that she’s not suffering and that they’re not waiting and wondering anymore. But, he admitted, it’s been difficult for him because she was his main focus for the last ten years of his life, and he’s felt a little lost without her. Kevin went back home and “hung out” for about a month, but then he went back to work at the beginning of February. He was going to take a longer time off, but it was winter there, and it just got to be too hard for him to be home alone all day. The weather was dreary, and it was difficult to get out so he went back to work and that’s been going well; he’s doing pretty well. The mornings and days are good, he said, and the only time it gets hard for him is in the evenings, when he comes home to an empty house. Doing What Must Be Done

That Kevin would feel lost without Grace is understandable on every level. His path had been joined with hers for decades as her husband and life partner, and, as her primary caregiver, he had long been entangled with the intensity of her dealings with illness and transplant. Recalling Grace’s fuller narrative (see chapter 2), I also was struck by the significance of her dying while surrounded by family, most particularly her father, who played such a central role in Grace and Kevin’s understanding of how she came to transplantation in the first place. Grace’s death, made “good” by the presence of caring relations, also represented the long culmination of several breakdowns in care, beginning in her childhood. But family life, its underpinnings and its outgrowths, do not occur in a vacuum. The breaches of care that nudged Grace over time toward transplantation are traceable also to the macropublic level. Her story, when examined with the others I have relayed, makes a compelling case for rooting public policy more firmly in the understanding that care is not merely a private matter. I take up these threads by engaging the work of feminist care ethicists, in dialogue with the findings I have described throughout these pages, to offer a view toward a reoriented collective path that would make movement through acute, complex care less treacherous, while simultaneously making it a less likely destination altogether. Despite being required to shoulder the risks of providing a bulk of transplantrelated cares, the majority of patients and loved ones incorporated them into their daily lives with little or no protest and tried their best to accommodate

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the new arrangements as more or less part of the regular order of things. Indeed, it was difficult for those I met during fieldwork to see things as playing out in any other way. Nearly every time I remarked on the challenges they seemed to be facing, participants were quick to verbalize a sentiment of “you do what you’ve got to do” and “you just take it as it comes.” In some ways, the world of biomedicine pivots on an analogous sentiment, doing what seemingly must be done when a patient will die without a transplant. For decades, and with little protest, our medical system has been working to incorporate transplantation as part of the order of things. Although it can extend the lives of recipients, this intensive, high-cost intervention could in fact be made unnecessary for many by employing a more “upstream” approach to well-being. For instance, one can imagine a different journey for Grace. As I recount in chapter 2, she likely would not have needed a transplant if paltry insurance coverage and their financial difficulties—compounded no doubt by Kevin’s layoff from a corporation undergoing “downsizing”—had not blocked her access to the medications that could have treated her ulcers. And she might not have had ulcers to treat, had she not experienced chronic hunger in childhood. Had her family of origin lived in a context where access to the basic necessities of life was treated as a given human right, there might have been less stress—both interpersonally and physiologically—for everyone. A shift in focus like this, I suggest, reframes the language of pragmatism that permeates transplantation and offers key insights for rethinking “what must be done.” Care as a Collective Concern

The challenges of serious illness that reverberate throughout kin networks and extended webs of relations, are not just simply personal or family matters. They represent entanglements with larger constraints, augmented by neoliberal policies that both presume the self-sufficiency and boundedness of individuals and families and are embedded in the current organization of medicine and care. The wreckage within these snarls underscores the need to work toward a stronger “safety net” (see Hall and Rosenbaum 2012) that more seamlessly weaves together health care policies with other social policies and services. One strand must include guaranteed universal access to comprehensive health care, with an emphasis on high-quality primary care and health insurance coverage that is not dependent upon employment status or income. This strand must also be interwoven with reliable transportation, language interpretation services, and complete, accurate information about one’s health status and treatment options (see Gabriella’s description in chapter 7 and Zoe’s story in chapter 3). All of these connections, too, can make the difference between healing and decline.

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Likewise, the basic building blocks of health and well-being—uninterrupted access to high-quality nutrition and safe housing, high-quality child care, education and training, and empathic, competent social and instrumental support that is sustained in part through paid family leave—must comprise anchoring threads in a policy fabric that supports everyone. A more holistic approach to health care is needed, and such an approach must exceed current paradigms, to take care—broadly conceived—as a central and collective concern that thoroughly permeates all of human life. Berenice Fisher and Joan Tronto (1991) have outlined four interconnected phases in care, which together pivot on the needs of others. These include the attentive recognition of needs (“caring about”), the assuming of responsibility to respond to needs (“taking care of”), the concrete and competent meeting of needs (“caregiving”), and responsiveness to show whether needs are indeed met (“care receiving”). Drawing on this work, Cheryl Brandsen (2006) argues that a “public ethic of care” could be wholly transformative as both a moral value and a political idea. Transcending conservative family values ideologies, local volunteerism, and other individuated and privatized (Tronto 2006) forms of care, Brandsen argues that the policies and programs emerging from a public ethic of care would meet four benchmarks in particular: First, policy and program development would begin with “a public discussion of needs,” grounded directly in the experienced perspectives of both caregivers and care-receivers (2006, 209). Second, recognizing the crucial importance of context, policies and programs would be flexible and responsive to variations in terms of both needs and what constitutes appropriate responses to those needs. Third, policies and programs would take seriously the interdependence of persons, honoring interdependence both within and outside the domain of care and recognizing that policies can powerfully shape relationships. And finally, these policies and programs would be “firmly grounded in a liberal, democratic, pluralistic society and be connected to a theory of justice,” where there is widespread “recognition that all of us need care at various points in our lives” and serious consideration of how current inequalities in care can be addressed. (Brandsen 2006, 209–210). A reorienting of policies and programs toward care as a collective concern would not only create and bolster relevant forms of support for transplant patients and those who care for them, but it would also operate at a broader level to address the constraints that shape paths to, through, and beyond transplantation. Such a shift could more effectively steer policy decision making toward both better meeting the needs of all persons dealing with serious, long-term illness and diminishing preventable suffering. Movement in this

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direction, overall, would be a move toward aligning political economies and interpersonal relations with care as an orienting domain of a public morality— one that is guided by a deep awareness that mutual dependence undergirds human social life. This has long comprised a fundamental tenet of social science (see Durkheim 1984 [1893], 331) and represents an area ripe for earnest collaboration with policy makers and clinicians. Reworking Paradigms

Social scientists, for example, can work closely with professionals in health care settings to rework clinical paradigms. Social workers, in particular, remain a largely undervalued but crucial ally. As outlined in the National Association of Social Worker’s (NASW’s) Code of Ethics, the core values of the profession (service, social justice, dignity and worth of the person, importance of human relationships, integrity, and competence) (National Association of Social Workers 2008) all in principle orient social workers toward an expanded conceptualization of families, kinship, and care. As members of interdisciplinary medical teams, social workers conduct psychosocial evaluations of potential transplant candidates, carry out interventions designed to help prepare patients for transplant, and remain available to recipients and those close to them for long posttransplant periods (Suszycki 1988; Zilberfein et al. 2001). I observed social workers steadfastly collaborating with patients to ensure that family and support networks remain intact, that health care and prescription medication coverage go uninterrupted despite employment disruptions for patients and those close to them, and that the rest of the medical team have a clear and accurate picture of the challenges and strengths surrounding patients in their everyday lives (also see Beder 2006; Dhooper 1994; Geva and Weinman 1995). But these actions, to the extent that they intervene primarily at the microlevel, can be prone to accommodating, rather than truly addressing, the underlying structural constraints that materialize as unmet requirements and outright crises. Furthermore, transplant clinicians, including medical social workers, generally are restricted to designing interventions that are intended (at least officially) for the benefit of the individual patient. And the focus overwhelmingly is on needs that relate to medical care while resources available for nonmedical needs are comparatively limited.1 In the context of caregiving relations, these shortcomings were pointed out to me, for example, by participants like Rob and Mary, who expressed that they had not felt adequately prepared for some of the ways in which their relationships would be strained in the process. They also were made clear by Zoe, who continued to struggle to provide for her children even as she was readily offered free transportation to and from her

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clinical appointments in the months following her transplant. Those surrounding transplant patients must not merely—or even primarily—be understood as potential caregivers (Peterson 1985), but rather as persons who likewise could be in need of multiple types of substantive support (Siston et al. 2001, 1186– 1187). Moreover, in those instances in which a patient is unable to identify a caregiver, it is important to recognize the possibility that the patient himself or herself is typically the main care provider to others in his or her life. Upon exploring the extent to which patients are the keystone members of their kin or other social network, under a holistic, web of relations-oriented approach, practitioners could think more creatively about the types of services and interventions that might most effectively serve both the patient and his or her networks and ultimately promote more effective care for all parties. To be clear, however, the immediate obstacles come not so much at the level of individual practitioners but at the level of institutional constraints, particularly in time, medical billing and insurance reimbursement practices, and professional hierarchies. Yet one can imagine new clinical care models in which social workers (and other professionals like nurses, financial counselors, dieticians, and clinical psychologists who work in similar capacities) are given the staffing, funding, and other resources to offer true, tangible social support to not only patients but also those with whom patients are involved in reciprocal networks of care and obligation. To be fully effective, they must also be afforded the means to devote a more substantial portion of their professional efforts toward macrolevel practice efforts in the areas of policy formation and community-level action that would serve to ameliorate the “upstream” determinants of the pressing dilemmas patients and their loved ones face. In effect, this would mark a close and productive alignment of social science, clinical, and community public health efforts. Such care models must be accompanied by increased funding and support through policies likewise guided by a public ethic of care. Rather than looking for ways to thin already inadequate budgets for programs meant to ensure access to basic necessities like food and nutrition, education, housing, addiction counseling, safe living situations, and primary medical care, policy makers must prioritize these areas with increased funding and investment. And with full understanding that these foundational building blocks are at least as important to health as the most advanced high-tech acute medical care, the gaps between health and social policy (see the full discussion in chapter 3) must be addressed as problems in themselves. Zoe’s case makes clear that this correlation must be prioritized at a national, rather than state, level: a northwestern state in essence funded her medical care and social assistance needs,

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which had in fact grown in severity while she waded through repeated denials of assistance in her home midwestern state. If guided by a public ethic of care, policy making would no longer either take a piecemeal approach or pivot on eligibility requirements so grossly out of step with the real-life circumstances of persons living in oppressive conditions. A more comprehensive approach would likewise shore up existing gaps for those who do come to need intensive “downstream” interventions. For example, while the ESRD Medicare program automatically covers those whose kidneys no longer function, its coverage is exceedingly narrow in scope. Even as patients with ESRD regularly are steered toward transplantation, the program’s coverage ends after thirty-six months following transplant. Among those who cannot otherwise afford ongoing medical care and the required expensive immunosuppressant medications, there is a serious risk of losing the transplant to rejection. These and other policy caveats must be removed, with comprehensive coverage forthcoming for any illness, including of course any type of organ failure, but also the conditions that lead up to such grave states. New avenues for coverage, including the marketplace insurance plans established under the Affordable Care Act, offer some hope. If inequities in transplantation (along with other areas of acute, complex care) are to be leveled, however, such plans must more explicitly include these procedures and all of their accompanying medical requirements. They also must include life-time coverage for post-transplant immunosuppressants and the full panoply of other necessary long-term medications. Such measures would in effect remove some barriers that can exclude potential candidates for transplant. In other words, no longer would proxies for class or socioeconomic standing—such as one’s demonstrated ability to arrange payment for post-transplant medications—factor into one’s candidacy for transplant. And in post-transplant care, solidifying lifetime access to immunosuppressants and follow-up medical care, for example, would remove wholly preventable risks to patients. It also would free up for other purposes the tremendous amounts of time, concern, and other resources that patients, caregivers, and clinicians alike regularly pour into patching gaps in medication and other insurance coverage. It would remove very real threats to other areas of daily life, too, where patients’ health expenses can compete directly with a household’s ability to sustain all of its members’ basic needs. Anthropologists and other social scientists similarly oriented can play a substantial role in these areas. As professionals trained to meticulously document the real-life stories of persons in all of their complexity of context and sociality, ethnographers in particular possess a unique capacity to shed light on

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the injustices, inconsistencies, and inequalities of the current health care system in meaningful and accessible ways (Sargent 2009). A more expansive dissemination of this information can be accomplished by publishing in not only academic media (Gorin 2009) but also magazines, newspapers, online blogs, and other forums that reach wider audiences. We also can more broadly share our insights by speaking not only at conferences targeted at colleagues but also in community settings and events, on radio and television, and through podcasts and online video, where we can contribute directly to the ongoing conversations and debates among the general public. And of course, in our classrooms we must continue to pass along to our students the tools to become more critically engaged observers and participants in their worlds. Widespread knowledge of the health care dilemmas we describe should be achieved by not only representing the voices of those we come to know through our research but also by likewise helping to empower patients and others to influence more directly the discourses on US health and social policy (Chadiha et al. 2004; Gutiérrez et al. 2005; Hoffman et al. 2011). This is in close keeping with a public ethic of care that insists on public discussions of needs that are firmly grounded in the perspectives of caregivers and care-receivers. Along these same lines, we can direct greater effort toward reframing the moral issues in health policy debates. The current emphasis on high-tech medicine, as I argue, is rooted at least in part by microlevel moral negotiations in which persons beholden to one another do what they can to carry out their obligations. And in the context of my fieldwork, the most reliable caregiving scenarios indeed seemed to be ones in which lay care providers both cared for and about the transplant patient and had the capacity to perform this care. But this capacity is deeply interconnected with the primary policy structure within which patients and caregivers were operating. We would do well to promote greater access, for example, to health care overall as a compelling and overarching moral issue. When the public conversation remains fixed only on individual rights, it can easily deteriorate into disinformation and anxieties that health care coverage for those who lack it can only come with a decrease in the amount and quality of coverage enjoyed by those who currently have it. This very sort of rhetoric permeated the congressional Town Hall meetings held across the United States during the summer of 2009, out of which emerged vehement but largely misinformed, headline-capturing protests against proposed health care reforms. Conversely, a reorientation of the dialogue toward a frank recognition of our collective and interdependent care needs across the lifespan (again in keeping with a public ethic of care) could offer a promising counternarrative. Moreover, by more clearly outlining the basic underpinnings

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of well-being and their interconnections with illness, the conversation’s direction could move more effectively beyond the confines of health care altogether. Much could be realized by bringing the moral issues concerning health, illness, and care into closer resonance with a broader spectrum of daily lives. Medical anthropologists, social workers, and others whose domains of inquiry and practice include illness and suffering understand that sociocultural values, practices, expectations, processes, institutions, policies, and other conventions play profound roles in producing what Bourgois and Schonberg have referred to as “the human cost of the American neoliberal model” (2009, 320). As I have tried to demonstrate here, everyday moralities concerning kinship and other obligations, as they are lived in the context of home life, articulate with biomedicine in ways that have significant consequences for how health care is both experienced and practiced. While high-tech biomedicine can offer nearmiraculous forms of healing, if it precipitates from and perpetuates social suffering (Kleinman, Das, and Lock 1997) in its own right and is not universally accessible, then it is crucial to explore, identify, and advocate for alternative paths. The capacity to move toward care for all thus leans on sustained interdisciplinary collaboration and concerted, thoughtful integration of empirical research and theoretical insights. It also hinges on continued efforts to work toward changes in health and social policies, programs, and practices, via action that is informed by grounded perspectives and provoked by the injustices revealed through critical inquiry from multiple angles.

Notes

Prologue 1 Patients who receive total parenteral nutrition (TPN) receive all of their daily nutritional requirements via a concentrated solution that is given intravenously, rather than through the gastrointestinal tract. 2 The notion that these organs, coming from a brain-dead donor, would already be Mary’s is worth further analysis and is taken up in various ways by previous critical examinations of organ transplantation in medical anthropology and sociology, but this discussion is beyond the scope of this book’s primary foci. 3 Small bowel transplant recipients typically are given a surgically created opening in the abdomen where the lower small intestine is routed to the surface of the body. There, waste passes into a plastic ostomy bag, which must be changed regularly. This allows time for ongoing monitoring of the transplanted bowel before it is later reconnected to the large bowel in a “take-down” surgical procedure. 4 Also see Shellmer, Brosig, and Wray (2014); and Lefkowitz, Fowler, and Wray (2014). My use of this phrase differs from the concept of “the patient journey,” used more regularly in nursing and allied health literature and often referring to a patient pathway modeling technique (see Crepaz and Curry 2013, for example) employed at the management level to understand how patients move through health care systems, with the aim of improving health care service delivery. Though I hope that this book, likewise, can inform the improvement of health care in the United States, I intend a more context-rich perspective than a primarily reductionist “patient journey” modeling approach. 5 In many respects, transplantation can also be considered analogous to a rite of passage, in the sense described by early anthropologist Arnold van Gennep (1960 [1909]). Indeed, the proximity of transplantation to death and the tendency for many to liken it to birth (or rebirth) can closely tether it to this category. Patients and loved ones, however, enter into the process not so much intending to transition to a new social status but rather hoping to return to a previous one, a sort of prior but ever-elusive normalcy—that is, everyday life without grave and incapacitating illness. 6 Rayna Rapp (2000, 209) developed the concept of “moral pioneering” to describe the experiences of women who undergo amniocentesis and then must make decisions about their pregnancies based on the results of prenatal testing. While this can certainly offer a useful framing for some dimensions of transplantation, for the purposes of this book, I find the concept of “wayfaring” to apply more directly as I focus less on persons’ decision making around the technology and more on their movements toward and beyond it.

Introduction 1 See, for example, Crowley-Matoka (2005); Frazier, Davis-Ali, and Dahl (1995); Jones and Egan (2000); Perry et al. (1998); Raiz (1997); and Raiz, Davies, and Ferguson (2003).

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2 Medical anthropologist Marcia Inhorn, writing from the context of infertility and the uptake of in vitro fertilization in Egypt, described what she called “arenas of constraint,” including “various structural, social-cultural, ideological, and practical obstacles and apprehensions” (Inhorn 2003, 16) encountered by infertile couples who might otherwise turn to reproductive technologies. This concept also applies in transplantation, which likewise is layered with restrictions. 3 I do refer to “needing a transplant” at various points throughout this book, to reflect the local values at work in my field settings. It should be noted, though, that the notion that a person could “need” a transplant has been critically examined by medical anthropologists and others who underscore its many social, cultural, political, economic, and historical underpinnings. Recently, for example, Sharon Kaufman shows how private industry in health care research and development, new technologies and therapies, insurance payment policies, and the local ethical fields in which patients and family members negotiate health care together create a “vocabulary that conflates ‘being medically eligible for’ and ‘needing’ a liver transplant” or other life-extending intervention (2015, 9). 4 See also Levine (1999) and Cartier (2003). 5 See Joralemon and Fujinaga (1997) and Monroe and Raiz (2005) for important critiques of the post-transplant “quality of life” concept. 6 The Organ Procurement and Transplantation Network was established through the 1984 National Organ Transplant Act, to develop policy for organ allocation and maintain a national registry to match donor organs with potential recipients. It is administered by a private not-for-profit contractor, the United Network for Organ Sharing (UNOS). (See http://optn.transplant.hrsa.gov/governance/about-the-optn/ history-nota/.) 7 See http://optn.transplant.hrsa.gov/. 8 Anthropologists and others have observed and critiqued the objectification, fetishization in the Marxian sense (Marx 1978 [1867]), and commodification of donors’ bodies and body parts (e.g., Hogle 1996; Lock 2002, 194; Murray 1996; Sharp 1995, 2000, 2001, 2006), including the outright sale of organs in a global, coercive, and mostly underground market in which impoverished people supply their own organs to wealthy patients (Cohen 1999, 2002; Hamdy 2012; Sanal 2004; Scheper-Hughes 2002a, b). My ethnographic research only included persons involved in the legal transplant enterprise and who, to my knowledge, were operating thoroughly within the official standard protocols of the transplant program. The living donors I did meet during fieldwork also were tied to patients as kin and caregivers. 9 Waiting list and organ distribution policies and procedures differ by type of organ or tissue, as well as from one cultural context to another, with policies reflecting local beliefs and values (e.g., Browning and Thomas 2001; Jacob 2012; Marshall 1992; Schmidt and Han Lim 2004; Ubel and Loewenstein 1996). 10 As surrounding rural areas continue to lose family farms and other small business, with the accompanying changes in employment opportunities, many small towns have noticed an outmigration of their populations to more urban areas like Metrotown. At the same time, several communities have been kept alive or even undergone revitalization as a result of a more recent influx of Latino, Spanishspeaking workers who have responded to increased demands for low-wage labor in industrial agriculture and meat-packing and other similar industries. As in many areas in the United States, tensions have risen in some locales as white residents have not uniformly welcomed their newer neighbors, even as these demographic



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changes have spelled the repopulation and economic redemption of rural communities that otherwise were on the decline. In Metrotown, African Americans comprise the largest minority population, with numbers steadily increasing among Latino, Spanish-speaking residents. Growing refugee communities from South and Southeast Asia, and from North, Central, and East Africa also add to the city’s diversity. Though it boasts a consistently low unemployment rate, its social geography, like so many US cities, remains notably segregated and with concomitant persistent social inequalities by social race and ethnicity (“Metrotown’s” Minority Economic Development Council). See Fredriksen (1999) for insights specifically about family caregiving among lesbians and gay men. Transplantation as a whole is plagued by disparities by demographic groups. In 2014, the overall percentage of adult male transplant recipients (for all organs) was 63.5, compared to 36.5 among females. Waiting list demographics fairly closely resembles this, with percentages of adult women candidates for all organs (39.4) slightly higher than recipients (the remaining 60.6 percent of candidates were men). Greater disparities emerge by social race and ethnicity. The largest percentages of adult transplant recipients are white (59.1), followed by African American (20.3), Hispanic/Latino (13.8), and Asian (5.3), American Indian/Alaska Native (0.8), and Pacific Islander (0.3). There also are notable differences between recipients and those on transplant waiting lists (and large disparities remain); compared to recipients, the percentage of adult waiting-list patients who are white is smaller (42.2) and the percentages who are African American are larger (30.2), followed by 18.8 Hispanic/Latino, 7.3 Asian, 1.0 American Indian/Alaska Native, and 0.5 Pacific Islander. (See http://optn. transplant.hrsa.gov, accessed July 18, 2015.) While I can say that the transplant professionals I met and spoke with showed tremendous personal dedication to serving their patients, research points to the role of larger persistent structural inequalities and discrimination in ongoing transplant disparities (e.g., Arthur 2004; Gordon 2001; Klassen et al. 2002; Wolfe 2003), with several highlighting the need for more targeted examinations of demographic disparities in transplantation (see Arthur 2004; Eggers 1995; Gordon 2001; Klassen et al. 2002; O’Hare, Johansen, and Rodriguez 2006; Wolfe 2003, 2006). Although I do routinely identify participants’ social race, gender, age, class, and other positioning axes, it must be kept in mind that these do not exist as isolated static categories; rather, these identifiers intersect with, interact with, and are multiplicative in relation to the others (Mullings 1997; also see Lewis 1995). All names in this volume are pseudonyms. To maintain further anonymity while also providing ethnographic detail, I have altered or obscured descriptive characteristics of participants in a manner that also aims to keep intact an accurate view of context. All original data that informs this volume were obtained through research approved by both my home university’s Institutional Review Board and that of the Health System University (a pseudonym), as well as the Health System University’s Nursing Review Committee, and the Health System University’s Scientific Review Committee. I also was required to complete the extensive formal credentialing process required of all employees at the Health System; while I was never actually employed by the Health System, this did offer the institutional assurance necessary to be allowed to conduct research at this field site. All participants shared their insights with me after giving both verbal and written informed consent.

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16 In these cases, since a patient’s own cells are used, antirejection therapies are not necessary. 17 Looking to organ transplantation and other life-extending therapies for increasingly older persons, Sharon Kaufman (2015) examines “the hidden chain of connections among science, politics, industry, and insurance as well as the ethos that supports that chain,” which drives what comes to be considered “ordinary medicine,” or, the taken-for-granted in US health care today (2015, 8). 18 While I initially assumed that medical social workers would play the most prominent role in helping me to meet patients and their care partners, the Transplant Center’s institutional structure lent itself to working closely with nursing staff, particularly the clinical nurse coordinators. The permission of the head physician was necessary for establishing a presence in any one of the transplant programs, but these nurses tended to be best positioned to help with recruiting patients. 19 Following any field experience, I recorded fieldnotes about every detail I could recall, including observations of social interactions, the physical setting, time of day, weather and season of the year, initial impressions, and preliminary analyses, as well as my own more subjective thoughts and emotions. Depending upon the circumstances, I wrote notes by hand, keyed them into a laptop computer, or spoke into an audio-recorder for later transcription. 20 These included events designed to honor and raise awareness about organ and tissue donors, as well as Organ Transplant Reunions in 2008, 2009, and 2012. At these occasions, hosted by members of the solid organ transplant teams, adult and pediatric solid organ transplant recipients, donors, and donor families gathered to eat together, hear speakers, attend educational sessions, participate in children’s carnivals, and pose for group pictures. 21 This fits with the “hierarchical-compensatory model” of care, proposed by Cantor (1979), in light of her finding that elder inner-city residents of New York City tended to turn first to family members, then to friends and neighbors, when they needed informal care assistance or support. 22 Estimates from 2015 held that 13.9 percent of US adults provide unpaid care to adult friends or relatives (another 2.7  percent cares for both adults and children). The vast majority of caregivers (85 percent) care for a relative, while 15 percent care for someone outside the family (“Caregiving in the US” Executive Summary, National Alliance for Caregiving and AARP 2015). 23 Susan Wendell (1996), drawing from a feminist perspective on disability, emphasizes that care and interdependence in relationships can simultaneously be reciprocal and unequal—with one person giving more care or having more responsibility than another—yet still involve moral obligations on both sides (1996, 150). 24 Also see Burack-Weiss (1995). 25 Critical of western biomedical training for disabling the capacity for medical students and other clinical professionals to give humane care, Kleinman calls caregiving “a practice of acknowledgement, empathic imagination, witnessing, responsibility, solidarity, and the most concrete forms of assistance” (2009, paragraph 1).

1. Early Navigations 1 Currently, unless a person also qualifies for Medicare because of age or disability, ESRD Medicare coverage will end thirty-six months following a successful transplant.



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2 A small amount of research (e.g., Casida 2005; Mishel and Murdaugh 1987; Peterson 1985) focuses on women transplant caregivers, lending some insights into gender and caregiving, particularly regarding the challenges women caregivers encounter. 3 Among the participants in my own nonrandom, nonrepresentative, qualitative study, I can report that twenty-four (61.5%) of the thirty-nine informal caregivers were women; among the men, eight were spouses or unmarried partners of patients (spouses, regardless of gender, seemed to be the “default” caregivers; of thirty-nine caregivers, twenty-two were spouses). There were also, however, patient-caregiver dyads in which I interviewed the patient but not the caregiver, and in at least two such instances the care partners were men. 4 The OPTN maintains data on reasons for removal from transplant waiting lists, but the categories are kept quite general. Next to having been given a transplant and a candidate’s death, “other” unspecified reasons comprise the next largest percentage (9.1%) of reasons for removal from waiting lists for all organs to date. (See http://optn.transplant.hrsa.gov/converge/latestData/rptData.asp, accessed July 23, 2015.) 5 Note that Nancy Scheper-Hughes has roundly critiqued the language and meaning of “living donation”; she suggests, for example, that it should be considered “sacrificial violence” (2007). Even as I critically examine the local moral and political economic underpinnings of the practice, particularly in chapter 5, for clarity I have opted to use the term “living donation” throughout this book. 6 The notion of “informed consent” deserves its own sustained analysis, but that is beyond the scope of this volume. 7 Because peritoneal dialysis filters the blood at a more constant rate, persons who use this treatment might have slightly relaxed restrictions. 8 See, for example, “Eat Right to Feel Right on Hemodialysis,” at http://kidney .niddk.nih.gov/Kudiseases/pubs/eatright/index.htm. 9 This surely is in part because I worked with persons who had received referrals and decided to pursue a transplant. However, not everyone on dialysis takes this route, and scholars have pointed to a number of factors at work in a patient’s remaining on dialysis rather than seeking transplantation (e.g., Arthur 2004; Gordon 2001; Klassen et al. 2002; Wiebe 2004; Wolfe 2003). 10 Patients often come to the Transplant Center from other parts of the state, the region, and the nation. For more in-depth analysis of cross-border travel for specialized medical care, see Inhorn 2003; Inhorn and Patrizio 2009; Song 2010; and Whittaker and Speier 2010; and for transplant in particular, Scheper-Hughes 2002b. 11 Polycystic kidney disease (PKD) is an inherited genetic condition that can cause numerous large cysts to grow in the kidneys, which changes their structure and hinders their function (see National Kidney and Urologic Diseases Information Clearinghouse [NKUDIC]: A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health 2011 “Polycystic Kidney Disease” Electronic document, at http://kidney.niddk.nih.gov/kudiseases/pubs/ polycystic/). Many of the persons I met in this study needed a kidney transplant because they were in renal failure brought on by PKD.

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2. Troubled Relations and Former Lives 1 As Cecilia Tomori (2009) shows us in her examination of breastfeeding in the United States, men’s kin work can be substantive in other domains once considered exclusively women’s. 2 In his work, Edward Casey takes inspiration from phenomenologist Merleau-Ponty. 3 Just as the body is central to experience and memory, so too can things constitute place by their very presence (Casey 1987, 205); Grace’s story poignantly shows how these domains can be so thoroughly linked together. 4 See, too, for example, Hochschild (1983) on the significance of “parental love” and “emotion work” in daily family life. 5 See Boris and Salazar Parreñas (2010), Yarris (2012); also cf. Zelizer (1985).

3. Precarity and Policy 1 See “Talking About Transplantation: Questions & Answers for Transplant Candidates about MELD and PELD” at http://www.unos.org/docs/MELD_PELD.pdf. 2 Organ allocation policy is continuously under review and subject to revision; see, for example, the concept paper, “Redesigning Liver Distribution to Reduce Variation in Access to Liver Transplantation” at http://optn.transplant.hrsa.gov/ContentDocuments/Liver_Concepts_2014.pdf for recent reconsideration of how geography ought to influence allocation. 3 The US Centers for Disease Control and Prevention (CDC) in fact makes no recommendation that a person infected with hepatitis C should be excluded from any particular types of work because they have hepatitis C. See http://www.cdc.gov/ hepatitis/hcv/cfaq.htm#cFAQ81. 4 The 2015 “How You Earn Credits” document published by the Social Security Administration states in its opening paragraph, “In 2015, you receive one credit for each $1,220 of earnings, up to the maximum of four credits per year” (see http:// www.ssa.gov/pubs/EN-05–10072.pdf). 5 Upon first being signed into law in 1965, Medicare did not yet include an ESRD component. According to Fox and Swazey (1978 [1974]), ESRD, including its corollary medical care in the form of dialysis and eventually renal transplant, gained this special status as a result of several factors, including successful lobbying campaigns, the visibility and growing number of dialysis patients, the relative success of kidney transplantation, and a desire among federal policy makers to demonstrate support for new life-saving technologies. 6 There are barriers, though, even for those who do have ESRD coverage: If a patient already has private insurance, the private insurer must be the primary payer for a thirty-month “Coordination Period.” At the time I was collecting data, there was a one-time, three-month waiting period to become Medicare-eligible for dialysis therapy, during which a patient was expected to pay for the costs of their treatment through private insurance, a Medigap (Medicare Supplement Insurance) policy, a state Medicaid program, Veterans Affairs, or out of pocket, depending upon a patient’s individual circumstances. Other state health and kidney programs also sometimes offer some assistance. This waiting period is waived if a patient agrees to participate in a home dialysis training program and do home-based dialysis regularly for the first four months. (US Department of Health & Human Services, Centers for Medicare & Medicaid Services, “Medicare Coverage of Kidney Dialysis and Kidney Transplant Services”). There is no waiting period, however, to be eligible



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under Medicare for transplant therapy, with coverage extending to the last day of the thirty-sixth month after a transplant surgery (and this coverage would be extended in case of the need for a subsequent transplant or if the patient needed to go back on dialysis) (Ehlers 2002, 286). 7 See Heinemann 2014a. 8 Hepatic encephalopathy is brought on when toxins that would normally be removed by the liver, accumulate in the body and cause a loss in brain function. (See “Hepatic Encephalopathy” at www.nlm.nih.gov/medlineplus/ency/article/000302.htm.) 9 In her description of death and dying in US hospitals, nurse and anthropologist Helen Chapple (2010) identifies and describes what she calls an “ideology of rescue” that permeates US biomedicine. 10 Such a fractured system can have the effect of pitting one state’s interests against another’s; for example, the northwestern state to which Zoe temporarily moved, in essence, bore the costs arising out of neglectful and punitive policies in her home midwestern state. 11 Under certain circumstances (in particular, one’s disabling condition must persist), Medicaid eligibility can remain intact even after new employment-based earnings make one no longer eligible for SSI (see http://www.socialsecurity.gov/ssi/spotlights/spot-medicaid.htm). Generally, however, coverage becomes notably less certain in these cases. 12 See http://aspe.hhs.gov/2015-poverty-guidelines. 13 See http://docs.house.gov/energycommerce/TIMELINE.pdf. 14 For a clear summary of the Supreme Court’s decision, see the July 2012 Focus on Health Reform policy brief, “A Guide to the Supreme Court’s Affordable Care Act Decision,” by the Kaiser Family Foundation, accessible online at http://kaiserfamilyfoundation.files.wordpress.com/2013/01/8332.pdf. 15 See http://kff.org/health-reform/issue-brief/the-coverage-gap-uninsured-poor-adults -in-states-that-do-not-expand-medicaid-an-update/. 16 See http://kff.org/health-reform/state-indicator/state-activity-around-expandingmedicaid-under-the-affordable-care-act/, accessed July 3, 2015. 17 See http://www.gallup.com/poll/186047/uninsured-rate-third-quarter.aspx, accessed November 21, 2015. 18 See https://kaiserfamilyfoundation.files.wordpress.com/2013/01/7834.pdf. 19 Discussed, for example, in the June  13, 2013, “Media Matters” blog by Remington Shepard, at http://mediamatters.org/blog/2013/06/13/fox-news-politicizes -girls-lung-transplant-to-a/194453. 20 For example, Oregon’s implementation of the Affordable Care Act was set to impose two-year waiting periods on covering transplants for patients who had lacked insurance coverage prior to joining the state’s plan. This waiting period, however, was part of the pre-ACA plan from 2012, on which the state’s plan was modeled (Bryan 2013). 21 Also see Schreiner (2000) and Plante (2000) for detailed insights into this history.

4. When Patients Are Also Caregivers The bulk of this chapter appears as an article in the journal Medical Anthropology Quarterly, as “For the Sake of Others: Reciprocal Webs of Obligation and the Pursuit of Transplantation as a Caring Act,” Medical Anthropology Quarterly 28 (1) (2014): 66–84. The same article was initially released online as “For the Sake of Others: Reciprocal

162

Notes to Pages 79–110

Webs of Obligation and the Pursuit of Transplantation as a Caring Act,” 8 November 2013 (DOI 10.1111.maq.12060). I am deeply grateful to the journal for permission to use it in this volume. 1 While, as I argued in chapter 1, there was very little overt critique of the biomedicalized ideals to which prospective transplant candidates are asked to adhere, I nevertheless observed ambivalence about pursuing transplantation in the first place. 2 See “Pancreatic Islet Cell Transplantation,” NDIC, http://diabetes.niddk.nih.gov/ dm/pubs/pancreaticislet. 3 Patients who receive total parenteral nutrition (TPN) receive all of their daily nutritional requirements via a concentrated solution that is given intravenously, rather than through the gastrointestinal tract. 4 The pill organizer tray’s individual lidded compartments, seven columns across and four rows down, help patients and loved ones to keep track of complicated medication regimens that can span into morning, noon, evening, and bedtime doses for each day of the week.

5. Conscripting Caregivers’ Health

(Or, When Caregivers Are Patients, Too)

1 This mirrors similar frames in examining caregiving outside of transplantation (e.g., Pinquart and Sörensen 2003, 2006, 2007; Schultz et al. 1995; Vitaliano et al. 2003). 2 Also see Glenn 2010 for analysis of these connections in relation to care work. 3 See http://www.medicaid.gov/medicaid-chip-program-information/by-topics/longterm-services-and-supports/home-and-community-based-services/community-firstchoice-1915-k.html, accessed July 7, 2015. 4 I thank Kristin Yarris for her help in forming this summative thought. 5 At the time of my fieldwork, the Transplant Center also was participating in a nationwide initiative in renal transplant known as “paired donor exchange” or “donor swapping,” designed to augment living donation and increase patients’ opportunities to receive a kidney. A transplant candidate may have someone in his or her life willing to donate a kidney but who is not a compatible “match.” When a second, also incompatible donor-recipient pair is found, and when Donor 1 is a match for Patient 2 and Donor 2 is a match for Patient 1, the two pairs can “swap” kidneys so that both patients can receive a transplant from a living donor. As with cadaveric donation, this is meant to be an anonymous exchange, where actual donor-recipient pairs do not learn each other’s identities. Only one of the kidney recipients I came to know, Janet, had actually participated in a paired donor exchange. Her cousin became a living donor to another patient, and in turn, Janet received a kidney from that patient’s incompatible donor.

6. Transformations in Home Life and High-Tech Health Care The bulk of this chapter appears as an article in the journal Medicine Anthropology Theory, as “Accommodating Care: Transplant Caregiving and the Melding of Health Care with Homelife in the United States,” Medicine Anthropology Theory 2 (1) (2015): 32–56. The article can be found online at http://www.medanthrotheory.org/read/4878/ accommodating-care. I am deeply grateful to the journal for permission to use it in this volume.



Notes to Pages 113–150

163

1 Exley and Allen (2007) point to a comparable development in the United Kingdom in home-birthing and palliative care suites. 2 See http://www.kidney.org/atoz/content/dialysisinfo.cfm. 3 See Buch (2013) for a fruitful analysis of “embodied care practices” among paid home care workers for elderly clients in Chicago. 4 Intravenous lines need to be periodically cleaned and flushed with sterile solution, for example, to ensure that the full dose of an IV drug is administered, and to prevent infection, clotting, etc. 5 Vancomycin is an antibiotic. 6 See Hurley et al. (2015) for a discussion of a parallel domain, the hinging of homebased hospice care on the level of family caregiver involvement. 7 See Glenn (2010) for further discussion of the coercive dimensions of care and care work.

7. Revealing and Reframing Kinship and Care 1 Some transplant programs have made publicly available the contract that patients and/or caregivers must sign to formalize their commitment to have a reliable caregiving arrangement in place at the time of transplant. At the time of this writing, such contracts could be found, for example, at http://www.pugetsound.va.gov/ docs/MTUCaregiverContract.pdf and at http://www.dukehealth.org/repository/ dukehealth/2013/07/08/14/55/21/7230/20130513%20ALO%20Before%20Transplant%20Book%201_nho%20%283%29%20-%20interim%20use.pdf.

Conclusion 1 One resource that is available is the transplant support group hosted by the Transplant Center and its clinical social work staff. Patients and their loved ones are widely invited to attend these sessions; the onus, however, remains on individuals, and one’s ability to attend can be limited by structural and logistical factors such as access to transportation, availability of time, and the particular relevance of this form of help.

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Index

AARP, 25, 119 Abel, Emily, 112, 114 ACA. See Affordable Care Act adult day care, 94 Affordable Care Act (ACA), 9, 23, 71; home-­ based care, 94–­95; individual mandate, 68, 69; marketplace plans, 152; policies, 67–­70; preexisting condition clauses, 57; requirements, 67–­68, 161n20. See also health insurance African Americans and organ donations, 103; study participants, 157n14 agentive control, 33 alcoholism, 26, 59, 134–­135, 136 allogeneic transplant, 14 Angel, Ronald, 57 Angela (Barry’s wife), 126 Annette (stem cell transplant patient), 88–­ 89, 92–­94, 137–­138 arena of constraint, 156n2 Arizona, 70 Arlene (Bernard’s wife), 114–­117 assistive technology, 94 autologous transplant, 14, 97, 158n16 Barry (heart transplant patient), 126 Bernard (kidney transplant patient), 32–­33, 114–­117 Betsy (pancreatic islet cell transplant patient), 79–­81, 85, 122 bilirubin measure, 58 biomedical technologies/practices, 89; developments, 10, 111, 114, 122; rise of, 33 “bio-­power,” 33 Blaine (pancreas transplant patient), 86, 133, 144 blood-­forming stem cell transplant, 13–­14, 104, 113. See also bone marrow transplant blood type, 99 Blue Cross and Blue Shield, 5, 72 bone marrow transplant, 13, 14, 130; autolo-

gous, 14; biopsy, 120; marrow development, 105; national registry, 97. See also blood-­forming stem cell transplant Bourgois, Philippe, 154 brain tumor, 88 Brandsen, Cheryl, 10, 75, 149 breast cancer, 88 Brodwin, Paul, 26 Buch, Elana, 125 Butler, Judith, 9 cadaveric donor, 162n5. See also donor kin (deceased) Cameron (kidney transplant patient), 27–­30, 33–­34, 39 cancer treatment, 13, 93, 137 Canning, Robert D., 119 Cantor, Marjorie H., 158n21 cardiovascular intervention, 31 care: arranging care, 24–­26, 136, 163n1; blended sphere of obligation, 16, 85 (see also kinship and caring); collective concern, 148–­150; cultural landscape, 9; described, 8–­10, 17, 78, 89; disparities and inequalities, 3, 9, 101–­103, 127; gaps, 141, 145; giving/receiving, 17; hidden aspects, 48; informal, 16, 24; logic of, 124; magnitude of responsibilities of, 3; models, 151; moral dimension (see obligation); personal accountability, 47–­52, 53, 126–­127, 129; personal vs. professional, 122–­125; political economies of (see politics); politics of (see politics); privatized, 114, 141, 149; public ethic of, 10, 149, 152, 153; relations of (see kinship and caring); self-­care, 54, 57–­58; structured inequalities, 9; unpaid, 16, 25, 75, 130, 138, 158n22; webs of, 16–­18, 130 (see also kinship and caring) care partner. See caregiver, transplant patient as caregiver: availability, 17; demographic

179

180 Index

caregiver (continued) data, 25; employment, 36–­37; navigating transplant process, 24; prospect of not being needed, 4; support for, 151. See also care; gender; kinship and caring caregiver as patient, 77; ability to take care of others, 95–­96; asking and offering care, 98–­104; donors’ patient experiences, 97, 104–­109; family, availability of, 101–­103; health and ability status of, 91–­95; situated donations, 96–­97 caregiver, transplant patient as, 76, 77–­90, 151 caregiving, described, 17–­18, 78, 89, 158n25. See also care; home life; kinship and caring Cartier, Carolyn, 112 Casey, Edward, 41 Cate (nurse), 138–­139 Catholicism, 41, 88 CDC. See Centers for Disease Control and Prevention Centers for Disease Control and Prevention (CDC), 160n3 “centrifugal tendencies,” 88 Chapple, Helen, 161n9 chemotherapy, 14, 88, 93, 131. See also cancer treatment chickenpox, 87 child abuse, 41–­44, 53, 114 childhood hunger. See malnutrition Chile, 75 choice, logic, 124, 128 cirrhosis, 26, 59 CLASS Act. See Community Living Assistance Services and Supports clinical psychologist, 151 coma, 83 Comaroff, Jean, 9 Comaroff, John, 9 Community First Choice Option, 95 Community Living Assistance Services and Supports (CLASS Act), 94–­95 compliance. See transplant, pre-­ constraints of transplant process, 8–­10 contagion, sources of. See sanitary protocols Corbin, Juliet, 13

creatinine, 58 culture: biomedical trends, 14, 33; caregiving, 17; daily life dimensions, 127; food-­ sharing realities, 31, 35; values linking gender with kin ties, 41 cystic fibrosis, 28 daily living. See home life Davidson, Suzanne, 119 death panel, 68 “dehospitalization,” 112–­113 dental work, 31, 84 depression, 135 Dew, Mary Amanda, 119 diabetes, 30, 31, 49–­50, 52, 53, 84, 87, 89 diagnosis-­related group (DRG), 112 dialysis, 28–­29, 30–­32, 34, 49, 73, 81–­82, 115, 142–­144, 159n7, 160nn5, 6 diet, 30–­31 dietician, 21, 151 di Leonardo, Micaela, 41 disability insurance, 9, 24, 82, 120 divorce, 35, 63 domestic violence, 26, 35, 50, 53, 63, 66–­67, 114 Donna (renal failure patient), 116 donor (living): asking/offering organ, 98; augmenting, 162n5; characteristics, 25, 103–­104; insurance coverage, 109; kin, 29, 156n8; language of, 159n5; logistics of, 91; maintaining normalcy, 104–­109; medical costs, 96, 102; medical requirements, 36; moral complexity, 99; needs of, 97; patient experiences, 104–­109; physical and emotional pain, 104–­109; prospective, 101, 102; protections, 104; race and, 103; risks, 103, 106; social inequalities, 101–­103 donor kin (deceased), 11, 97, 99, 102 donor–­recipient compatibility, 97, 99 donor swapping, 162n5 downsizing, employer, 148 DRG. See diagnosis-­related group Driving Under the Influence (DUI), 135 drug addiction, 19, 58, 66–­67, 75–­76, 87, 102, 114, 133 DUI. See Driving Under the Influence Durkheim, Emile, 17, 85–­86, 88

Index 181

economic disparities, 9, 16, 17, 57, 110 Edward (kidney transplant patient), 36–­38 Egypt, 73 Eliza (Hank’s daughter), 72, 74, 98–­101, 103–­104 emergent masculinities, concept of, 121 Emily (kidney transplant patient), 32, 34–­ 35–­36, 47–­55, 57, 81–­85, 87, 90 emotion work, 160n4 employment: “discharge for ordinary misconduct,” 62; disruptions, 150; inability to work, 56, 59–­62, 66, 91, 160n3; health insurance tie-­in, 9, 44, 66, 67, 82, 111, 120; layoff, 148; leave from, 87, 102, 105, 132; productive labor, 94; retirement, 118; “voluntary quit,” 62; work program, 62, 65 encephalopathy, 64, 161n End-­Stage Renal Disease (ESRD), 31, 58–­59, 60, 72, 73 End-­Stage Renal Disease (ESRD) program. See Medicare ESRD. See End-­Stage Renal Disease ethnicity, 12, 45, 157nn11, 13. See also culture eviction (housing), 35 family: availability of, 101–­103; changes in, 36–­38; child rearing, 132; conservative values, 149; dynamics, 140; geographical distance, 130–­132; new realities of, 1, 3, 8; nuclear, 130, 132–­134; parenting, 132; redefining, 135–­136; responsibility, 85; tensions, 16, 130, 133, 141. See also home life; kinship and caring family leave, 132, 149 filgrastim, 105 finances: childhood poverty and, 54; job loss and, 43–­44, 148; stress of, 5, 58–­66, 87, 93, 114; transplantation expenses, 9, 72, 91 financial counselor, 21, 23–­24, 151; pharmaceutical, 22–­23, 24, 91 “Fiscal Cliff” deal, US Congress, 95 Fisher, Berenice, 78, 149 fistula, 31, 32, 34, 49 food, social significance, 30–­31, 35 foreclosure (housing), 35

Foucault, Michel, 33, 111 Fox, Renée, 104, 160n5 France, 33 Frederick (Donna’s husband), 116 fundraising activity, 73–­74 Gabriella (study participant), 141–­144 Gallup-­Healthways Well-­Being Index-­ Survey, 70 Garcia, Angela, 133 gay men, 136 gender: body shape/size, 53; caregiver, 25–­26, 130, 144; codes of nurturance, 43; female caregivers, 25, 110–­111, 119, 134, 159n2; male caregivers, 25–­26, 120–­122, 134–­136; shifting intersections of gender and care, 119–­127, 135; stereotypes, 121, 136; study participants, 157n14 gendered labor, 41, 80, 119. See also kin work germ theory, 111 Glenn, Evelyn Nakano, 162n2 (chap. 5), 163n7 global capitalism, 96 glucometer, 122 “golden arm,” 32 Grace (small bowel transplant patient), 40–­ 47, 53–­55, 57, 136, 146–­149 graft, 32 Gutmann, Matthew, 136 Hamdy, Sherine, 73 Han, Clara, 75 Hank (liver transplant patient), 58, 72, 74, 99–­101, 102, 103–­104 HealthCare.gov website, 68 health care system: access to, 53, 63; biomedical trends, 14; comprehensive policy, 10; cost-­cutting approaches, 112–­113, 125, 141, 143; costs, 57, 111; dilemmas, 153; disparities, 57, 60; failings, 59–­60, 61, 66, 73, 141, 144; gatekeepers, 60–­61; holes in, 9–­10, 44; holistic approach, 149; inequalities, 69, 71, 102, 152–­153; irrationality, 69; managed care approach, 112; mistrust in, 103; models, 145; overarching context, 125; piecemeal, 67, 152; policy, 56–­76, 148; profit-­driven interests, 94, 109, 110,

182 Index

health care system (continued) 127–­128, 141; quality primary care, 148; redomesticating, 113–­114; reliance on unpaid care, 130, 138; reprivatizing, 112; universal access, 68, 69, 148 health insurance: access to, 57, 66, 70, 82; annual dollar limit for coverage, 5; “catastrophic coverage limit,” 71; co-­pay, 65; cost of premiums, 5, 68; coverage, 54, 57, 148; “coverage gap,” 69, 71, 87; employment tie-­in, 9, 44, 56, 60, 66, 111, 120, 148; experimental procedures, 43; fee-­for-­service payments, 111; lifetime benefit limits, 5, 67, 68, 152; navigating complex system, 72–­73, 93, 144; Open Enrollment period, 68; out-­of-­pocket costs, 23, 59, 71, 102; policy limit, 72; and preexisting conditions, 9, 56–­76; reimbursement practices, 151; retirement and, 60; securing, 63; state-­sponsored, 9; transplantation expenses, 9, 23, 91; transplantation restrictions, 71; uninsured, 60, 67, 70, 71. See also Affordable Care Act Health Insurance Exchange, 68, 69. See also Affordable Care Act Health System (fieldwork site), 12, 14; on-­ site hotel, 15–­16 heart transplant, 24, 25, 119 heart-­lung transplant, 69 Helicobacter pylori (H. pylori), 54 hemodialysis treatment, 31, 34, 115. See also dialysis Henrici, Jane, 57 hepatic encephalopathy, 161n8 hepatitis C, 56, 59–­60, 61, 160n3 heparin, 142 hierarchical-­compensatory model, 158n21 HLA. See human leukocyte antigen Hochschild, Arlie, 134 Hoffman, Beatrix, 69 home: aligning with clinic, 35–­36, 39; creating sanctuary, 125–­126; home–­hospital–­ home shift, 110–­119; home–­hospital blended space, 1, 16, 117–­119; modifications, 94; research fieldwork, 12–­16; site of high-­tech health care, 122–­123. See also sanitary protocols

home health care, 64–­66, 94, 95, 110, 119; nurse, 140 homelessness, 63 home life: blended sphere of obligation, 16, 26, 85; constraints on, 9; daily living activities, 18, 81, 105, 126–­127; gender and care, 119–­127; maintaining, 63–­65, 104–­109, 113–­114; medical regimens and daily life, 3; quality of daily life, 10; transformations, 110–­128. See also family homemaker services, 94 hospital accommodations, 113 Hospital Survey and Construction Act, 111 human leukocyte antigen (HLA), 97 ileostomy bag, 4, 123 immunosuppressant medications, 31, 36, 125–­126, 152 Independent Payment Advisory Board (IPAB), 71 individual, value of, 85 “informed consent,” 159n6 Ingold, Tim, 6, 8, 18 Inhorn, Marcia, 121, 136, 156n2 INR. See international normalized ratio insulin, 79, 89 insurance. See health insurance international normalized ratio (INR), 58 intravenous (IV) line, 120, 163n4 IPAB. See Independent Payment Advisory Board isolation, feelings of, 140–­141 Jacob (girlfriend’s caregiver), 134–­136, 144 Janet (kidney transplant patient), 78, 104–­ 109, 120–­121, 130–­133, 134, 144, 162n5 job loss, 43 Kaufman, Sharon, 79, 89, 98, 156n3, 158n17 ketoacidosis, 49 Kevin (Grace’s husband), 40–­47, 54, 146–­149 kidney: donation, 89, 162n5; failure, 3, 27, 30, 36, 98, 118, 152 kidney and pancreas transplant, 31, 48, 77, 82, 84. See also kidney transplant; pancreas transplant; renal transplant kidney transplant, 27–­29, 160n5; amount of care, 25; “ethical field of,” 98; living/de-

Index 183

ceased donor, 97, 104; pre-­treatment, 22, 31; study participants, 13, 15, 36, 39, 78, 95, 96, 118. See also renal transplant kinship and caring: blended sphere of obligation, 16, 85; burdensome aspects, 96; capacity, 75; categories of, 16; components of relatedness, 17; constraints, 30–­35; demonstration of support, 10; described, 16–­17; emotional aspects, 113–­114; feelings of closeness/relatedness, 133, 135; gender, 80; in hospital, 113; intersections, 90, 135; lack of, 96, 138–­141; lived value, 84; nature of, 17; next-­of-­kin status, 139–­ 140; non-­family, 134–­138; obligation (see obligation); practicing, 44–­45; quality of caring relations, 140; relations of, 25–­26, 39–­55, 58, 64; revealing and reframing, 129–­145; rights, 86; shaping of, 3; shared ownership of pain, 106–­107; webs of care, 16–­18, 76, 91–­109, 158n21. See also care; family; gender; home life kin work, 40–­41, 160n Kleinman, Arthur, 158n25 language, 45, 141–­144, 148 left ventricular assist device (LVAD), 24–­25, 35 Lein, Laura, 57 lesbian women, 136 leukemia treatment, 105 liberty, value of, 85 liver failure, 64, 80 liver transplant, 134, 140; allocation policy, 58; impact of caregiver characteristics, 26; study participants, 13, 56, 63, 66, 72, 94, 99, 118 love, parental, 40–­47, 53, 54, 136, 160n4 lung transplant, double, 28 LVAD. See left ventricular assist device Lynn (Annette’s sister), 88–­89, 138 malnutrition, 54, 57, 148 Maori citizens (New Zealand), 103 Marguerite (stem cell transplant patient), 137, 144 marijuana use, 29 marital relationship, challenges, 3–­5, 121, 150

Marvin (kidney/liver transplant patient), 117–­119, 122 Marx, Karl, 156n8 Mary (small bowel transplant patient), 1–­7, 8, 39, 94, 121–­125, 150 Maynard, Ronald, 28 Medicaid: applying for, 5; coverage, 57, 111; eligibility, 61, 67, 112, 161n11; expansion, 68, 69; reliance on, 87; spend-­down, 24; state program, 63, 65, 70, 95 medical insurance. See health insurance Medicare: coverage, 112, 141, 143, 160n6; disability, 72; “donut hole,” 71; End-­Stage Renal Disease program, 23, 60, 73, 152, 158n1, 160nn5, 6; managing, 93; Part D prescription drug coverage, 71, 72; reliance on, 87; retirement health benefit, 60 medication: amount of, 22–­23, 65, 162n4; assistance program, 23; costs, 71, 152; high-­ tech, 153; insurance and access to, 44, 54, 70–­71; pill organizer tray, 86–­87, 162n4 Medigap, 160n6 MELD. See Model for End-­Stage Liver Disease memory and place, 41 methamphetamine, 58, 59, 66–­67, 75 Metrotown (fieldwork site), 12–­16, 156n10; demographics, 12, 157n13; hospitals and “homing” trend, 113; proximity to, 56; relocation to, 36, 37–­38, 104, 131, 132 migrants, undocumented, 69–­70 military benefits, 82 millennial capitalism, 9 Milligan, Christine, 114 Model for End Stage Liver Disease (MELD), 58–­59 Mol, Annemarie, 48, 89, 124 moral authority, 85 moral obligation. See obligation moral pioneering, 155n6 moral space, 44 moral wayfarer. See wayfaring Morse, Janice, 13 motherhood, 32, 35, 47–­52, 79–­85, 90, 134 Murdoch, Iris, 39, 54 multiple sclerosis, 92 National Alliance for Caregiving, 25, 119

184 Index

National Association of Social Workers (NASW), Code of Ethics, 150 National Organ Transplant Act, 156n6 nephrologist, 21, 29, 49, 142–­143 nephropathy, 27–­28 Neupogen, 108 New Zealand, 103 nurse transplant coordinator, 21, 33, 91, 104, 128, 158n18

poverty, 54, 57, 58, 61, 66, 68, 69, 95, 144 PPS. See prospective payment system precarity, 8–­10, 56–­76 pregnancy, 48, 51, 52, 53 “privatized caring,” 141 professionalism, detached, 124 prospective payment system (PPS), 112 psychologist, 21 quality-­of-­life concept, 156n5

Obama, Barack, 69 Obamacare. See Affordable Care Act obligation: expectations, 91–­109; kinship, 6, 16–­18, 41, 75, 76, 84, 85–­90, 91–­109, 125, 144, 146; moral, 26, 41, 44–­45, 47, 92, 94, 98, 104, 109, 125, 144, 158n23; reciprocal, 77–­90, 91–­109 OPTN. See Organ Procurement and Transplantation Network Oregon, 161n20 organ allocation policy, 58–­59, 156n6 Organ Procurement and Transplantation Network (OPTN), 156n6, 159n4; donor characteristics, 25; organ shortage statistics, 10–­11 organ shortage, 10; social conditions, 11; statistics, 10–­11, 157n13; trafficking, 96, 97, 156n8 organ (solid) transplant, 13, 113, 158n20. See also specific organ ostomy, 123–­125 paired donor exchange, 162n5 pancreas transplant, 13, 21, 22, 84, 86, 94 pancreatic islet cell transplant, 79, 122 pancreatitis, 79 Patient Protection and Affordable Care Act. See Affordable Care Act peritonitis, 115–­116, 159n5 peritoneal dialysis, 115, 159n7 “personal fables,” 39, 54 personhood, 94, 97 pill organizer tray, 86–­87, 162n4 place and memory, 41 politics, 56–­76; biomedical trends, 14; caregiving, 17, 110, 146; economies of care, 9; racial, 69 polycystic kidney disease, 36, 118, 159n11

race: caregiving and, 110; family and, 132; inequalities, 157nn11, 13; moral orientations, 45; and organ donation, 103; study participants, 12, 157n14 racism, 46, 69–­70, 156n10 radiation therapy, 14. See also cancer treatment Rapp, Rayna, 133, 155n6 relatedness, nature of, 133, 135 religion, 41 renal failure, 28–­29, 30, 116 renal transplant, 21, 160n5, 162n5. See also kidney transplant Republican party, 68 “rescue, ideology of,” 66, 161n9 research study: caregiver demographics, 25–­26, 159n2; fieldwork, 12–­16; geographic location, 12; methodology, 14–­15, 158n19; participants, 12–­13, 15, 157n14; terms defined, 12 respite care, 94, 127 Rob (Mary’s husband), 1–­7, 8, 94, 121–­125, 134, 150 Roberta (Annette’s sister), 92–­94, 96, 137–­ 138 Robin (Jane’s sister), 104–­109, 130 rural community, 62, 66, 74–­75 Russ, Ann, 89, 98 “sacrificial violence” of living donation, 159n5 Saiz, Mr. (kidney and pancreas transplant patient), 22–­24, 31, 77, 85, 91, 96 Saiz, Mrs., 22–­24, 77, 85, 91, 96, 98 San Francisco, California, 135–­136 sanitary protocols, 115–­116, 126–­127 Santillan, Jesica, 69

Index 185

Scheper-­Hughes, Nancy, 11, 159n5 Schonberg, Jeff, 154 Sharp, Lesley, 97 Shaw, Rhonda, 103 Shim, Janet, 89, 98 skilled nursing, 15–­16, 143 small bowel transplant, 13, 39, 40, 54, 94, 146 social class: biomedical trends, 14, 33; caregiving, 17, 101–­103, 110; health care coverage disparities, 57, 145, 152, 157n13; limits created by, 16; moral orientations, 45; preemptive transplant, 29; study participants, 12, 157n14; transplant costs, 23; transplantation inequalities, 29, 157nn11, 13 social network, 37, 54, 59, 76, 102, 122, 127, 129–­130, 132, 141, 146 social policy, 9, 10, 11, 57, 148–­149, 151 Social Security: Amendments, 111; Disability (SSD; SSDI) program, 60–­61; work credits, 60 social welfare, state-­sponsored resources, 10 social work/social workers, 13, 21, 25, 35, 129, 137, 138, 143, 144, 150, 151 South Carolina, 70 spouse. See family; home life; kinship and caring SSD. See Social Security, Disability program SSDI. See Social Security, Disability program SSI. See Supplemental Security Income Stack, Carol, 132 stem cell transplant, 13, 88, 93–­94, 97, 105, 106, 113, 130, 131, 137 substance abuse. See alcoholism; drug addiction Supplemental Security Income (SSI), 56, 59, 60, 61, 63, 65, 67, 95, 161n11 surgeon, 21 Swazey, Judith, 104, 160n5 Tamara (Edward’s wife), 36–­38 Taylor, Charles, 44 Tea Party movement, 68 “technological imperative,” 89 Tomori, Cecilia, 160n1 total parenteral nutrition (TPN), 2, 79, 81,

155n1, 162n3 TPN. See total parenteral nutrition translation services. See language transplant: as act of care, 79; assumptions, 8; “choice,” 79–­80, 142, 143; complications, 83; constraints and precarity, 8–­10; costs, 23, 70, 71, 73; donor/kin/recipient relationship, 11, 156n8; information dissemination, 59–­60; medical errors, 2, 6, 69; “need” for, 53, 156n3; organ failure, 9, 152; policy, 56–­76; preemptive, 29, 57, 66, 70; procedure, 8; recipient demographics, 27; rejection, 152; reunion, 14–­15; service, 65–­66; social injustice and, 54–­55, 56–­76, 152; statistics, 10–­ 11; team, 56, 64, 91–­92, 104, 129, 136; treatment options, 143–­145, 148; types of transplantation, 13–­14 (see also specific type of transplantation). See also transplant, post-­; transplant, pre-­; transplant process Transplant Center (fieldwork site), 12–­16; extended stay accommodations, 36, 37, 75, 134; focus panel, 93; home–­medical arena interface, 21; “homing” trend, 113; institutional structure, 158n18; Organ Transplant Reunions, 14–­15, 140, 158n20; patient population, 12–­13; pre-­transplant process, 27, 63, 77, 78, 79; proximity to, 56, 104, 131, 133; support group, 163n1; travel to, 65 transplant medicine, 8 transplant, post-­: amount of care, 25; costs, 23; immunosuppressants, 31, 152; living, 6, 125–­126; monitoring, 131, 136; quality of life, 156n5; shortened hospital stay, 113 transplant, pre-­, 15, 21–­22, 36–­38; aligning home and clinic, 35–­36; arranging care, 24–­26; bodily preparations, 30–­35; compliance, 26–­27, 82; complicated ideals, 30–­35; dialysis regime, 115; exclusionary factor, 27; “good candidate,” 22, 25, 26–­27, 31, 33, 152; in-­clinic consultation, 21, 22–­27; preexisting conditions, 22–­24; requirements, 26–­30; screening, 11, 26, 77, 78, 145; Selection Conferences, 30; waiting period, 160n6, 161n20 transplant process, 6, 8, 155n5; complexity,

186 Index

transplant process (continued) 18; impact on relationships, 106; precarity and policy, 55–­76; as right and caring procedure, 90. See also transplant, post-­; transplant, pre-­ transplantation. See transplant transportation services: accessible, 94, 119; accommodations, 93; costs, 102, 142, 144, 150; reliable, 148; to Transplant Center, 15, 163n Tronto, Joan, 78, 141, 149 Type 1 diabetes, 49, 53 Type 2 diabetes, 49, 53 Type A personality, 44–­45, 53 ulcer, 40–­47, 53, 148 unemployment benefits, 61–­62; “back-­to-­ back” claims, 62 United Network for Organ Sharing (UNOS), 156n6 UNOS. See United Network for Organ Sharing urban community, 74–­75 U.S. Department of Health and Human Services, 95

U.S. Supreme Court, 69 vancomycin, 120, 163n4 violence. See child abuse; domestic violence waiting list, 11, 27, 30, 72, 99, 156n9, 157n13 “wash-­out,” 40 wayfaring: concept of, 6–­7, 8, 155n6; lines of, 18, 47; moral wayfarer, 6, 47, 86, 144 weight gain, 52 welfare policies, 61–­62 Wendell, Susan, 158n23 Wentzell, Emily, 121, 136 Weston, Kath, 135–­136 William (kidney transplant patient), 95–­96, 101–­103, 109 Wilson, Joe, 70 women as caregivers. See gender wound care, 3, 120, 123 Yarris, Kristin, 162n4 Zoe (liver transplant patient), 56–­76, 150, 151–­152

About the Author

Laura L. Heinemann  is an associate professor of medical anthropology in the Department of Cultural and Social Studies at Creighton University, where she teaches and conducts research related to her central interests in caregiving, kinship, and high-tech medical care in the home.

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Available titles in the Critical Issues in Health and Medicine series: Emily K. Abel, Suffering in the Land of Sunshine: A Los Angeles Illness Narrative Emily K. Abel, Tuberculosis and the Politics of Exclusion: A History of Public Health and Migration to Los Angeles Marilyn Aguirre-Molina, Luisa N. Borrell, and William Vega, eds. Health Issues in Latino Males: A Social and Structural Approach Anne-Emanuelle Birn and Theodore M. Brown, eds., Comrades in Health: U.S. Health Internationalists, Abroad and at Home Susan M. Chambré, Fighting for Our Lives: New York’s AIDS Community and the Politics of Disease James Colgrove, Gerald Markowitz, and David Rosner, eds., The Contested Boundaries of American Public Health Cynthia A. Connolly, Saving Sickly Children: The Tuberculosis Preventorium in American Life, 1909–1970 Tasha N. Dubriwny, The Vulnerable Empowered Woman: Feminism, Postfeminism, and Women’s Health Edward J. Eckenfels, Doctors Serving People: Restoring Humanism to Medicine through Student Community Service Julie Fairman, Making Room in the Clinic: Nurse Practitioners and the Evolution of Modern Health Care Jill A. Fisher, Medical Research for Hire: The Political Economy of Pharmaceutical Clinical Trials Alyshia Gálvez, Patient Citizens, Immigrant Mothers: Mexican Women, Public Prenatal Care and the Birth Weight Paradox Gerald N. Grob and Howard H. Goldman, The Dilemma of Federal Mental Health Policy: Radical Reform or Incremental Change? Gerald N. Grob and Allan V. Horwitz, Diagnosis, Therapy, and Evidence: Conundrums in Modern American Medicine Rachel Grob, Testing Baby: The Transformation of Newborn Screening, Parenting, and Policymaking Mark A. Hall and Sara Rosenbaum, eds., The Health Care “Safety Net” in a PostReform World Laura L. Heinemann, Transplanting Care: Shifting Commitments in Health and Care in the United States Laura D. Hirshbein, American Melancholy: Constructions of Depression in the Twentieth Century

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