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A Death RetoldJesica Santillan, the Bungled Transplant, and Paradoxes of Medical Citizenship$

Keith Wailoo, Julie Livingston, and Peter Guarnaccia

Print publication date: 2006

Print ISBN-13: 9780807830598

Published to North Carolina Scholarship Online: September 2014

DOI: 10.5149/9780807877524_wailoo

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Fame and Fortune

Fame and Fortune

The “Simple” Ethics of Organ Transplantation

Chapter:
(p.349) Fame and Fortune
Source:
A Death Retold
Author(s):

Nancy M. P. King

Publisher:
University of North Carolina Press
DOI:10.5149/9780807877524_wailoo.19

Abstract and Keywords

This concluding chapter situates the Santillan story in the broad context of other high-profile “mediagenic” medical cases from the conjoined Bijani twins to Terri Schiavo, presenting commentaries on the narratives generated in the media, in bioethics, and in public policy. The Bijani sisters' story, like Jesica's story, provides an example of the complexities of medical uncertainty and optimism and the moral framework of health care choices.

Keywords:   Jesica Santillan, medical cases, Bijani twins, Terri Schiavo, bioethics, public policy, medical uncertainty, health care choices

Jesica always wanted to be famous. It's just a shame she had to be famous this way.—Mack Mahoney, Santillan family benefactor, Raleigh News and Observer, 2004

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

What interests me most is their familiarity. These questions return again and again, in stories about medical advances and family tragedy, because they haven't really been answered. And the questions are familiar for another reason, too: they go hand in hand with the stories of individuals like Jesica, whom we come to know through the peculiar variety of fame exemplified in her story and examined in this volume. These stories are characterized not only by fame but also by fortune—that is, both money (organ transplantation both generates and requires a great deal of it) and luck (being on the right list in the right place at the right time with the right blood type and the right story to show that you deserve your organ and will treat it well). The familiar and recurring questions, when asked about transplantation, show us that fame and fortune, a historically simple formula for success, is deceptively simple—in reality, devilishly complicated in terms of technology, society, and ethics.

Three narratives help illuminate this complexity. First, the story of how organ transplantation has evolved from experiment to expected treatment, even while it is still a profoundly imperfect technology, represents some key aspects of how we regard scientific progress. Second, the stories that are told about patients and doctors involved in life-and-death technologies like organ transplantation seem to teach us something about what we collectively value—both by what such stories include and by what they omit. And finally, the way our storytelling unfolds, when we are presented not only with Jesica's (p.350) story but also with those of her many sisters—not only Libby Zion, Baby Fae, and Julie Rodriquez (see the Lerner and Sharp essays in this volume) but also Karen Ann Quinlan, Nancy Cruzan, Jamie Fisk, Ladan and Laleh Bijani, and, most recently, Terri Schiavo—raises questions about the relationships between individual and societal viewpoints and responsibilities. How do—or should—individual stories really matter?

Twenty-five years ago, Jamie Fislc's father took to newspapers the story of his adorable toddler daughter's incurable liver disease and Blue Cross/Blue Shield of Massachusetts' refusal to pay for her transplant.1 Amazingly, this appeal to consider liver transplantation as the standard of care for biliary atresia came fewer than twenty years after Bennie Solis, the first toddler to be given a new liver for the same disease, died during the surgery (see Sharp essay in this volume). Today, Jesica Santillan and her mother appear on television public service announcements in North Carolina promoting organ donation through a foundation called Jesica's Hope Chest.2 Jesica's death in February 2003 is not mentioned.

Organ transplantation has had a short and spectacular history as a technology. Thanks to attractive poster children from Jamie to Jesica, it has gone from expensive, uncertain, innovative, and not covered by insurance to so standard and familiar that people are no longer said to die from organ failure. Instead, they are said to die for lack of transplantable organs (see Rhodes essay in this volume). Yet organ transplantation is still expensive; it still has many of innovation's characteristics, even as it is considered routine; and it is, most definitely, an uncertain, burdensome, and medically complex “halfway technology.”3

Both because Jesica would have died if she had not received a transplant and because she died after her mismatched transplant, it is easy to forget that life after transplantation is challenging in many respects (see Cook essay in this volume).4 “In six years, I've had a stroke, a possible rejection episode, two bouts with double pneumonia, a nasty (and potentially life-threatening) cryptococcal fungal infection, and taken over $100,000 in anti-rejection drugs,” said Geov Parrish, recipient of a kidney-pancreas transplant, in 2001. Even more challenging is the other key aspect of this halfway technology—it's temporary: “[M]y six-year-old non-native organs have a finite life span,” Parrish added. As transplantation technology, immunosuppression, and after-care improve—which, through innovation, they surely will—difficult medical, societal, and ethical questions about repeat transplantation can only increase. As Parrish poignantly asks about himself, “I'm left with one of those too-simple questions: How much is the extension of a life worth?”5

(p.351) Even though it is a resource-intensive halfway technology, organ transplantation does offer patients a reasonable likelihood of an outcome that is often significantly better than available alternatives. In light of continual technological advances, it may be exceedingly difficult to remember that there is no certainty attached to any outcome. This difficulty is not unique to transplantation but is shared by many medical technologies. Two good examples represent the most common and the rarest of technologies, respectively: Cardiopulmonary resuscitation, or CPR, and the artificial heart.

CPR is routinely depicted on television as highly effective rescue technology.6 It works—way too often on TV, of course, in comparison to real life—or it fails and death follows. What is left out of the picture is the patient whose heartbeat is restored but whose brain has been irreversibly damaged, or who cannot be weaned from the respirator after resuscitation. End-of-life decision-making in health care has for many years been plagued by the reality of what lies in between definitive failure and definitive success, even though CPR has become routine. At least some patients and families with experience as the beneficiaries of medical technology now refuse resuscitation because they fear what will happen if it doesn't work. And even those without experience rely on stories about its failure to inform their decisions. In the 1980s, people said, “Don't let me become another Karen Ann Quinlan.” In the 1990s, they instead referred to Nancy Cruzan. Today, of course, the person many of us don't want to live like is Terri Schiavo.7 It is noteworthy—but perhaps not surprising—that the invocation of these women's names condenses intricate narratives of family tragedy into simplified images of helpless and dependent young women whom technology has both saved and failed.

At the other end of the spectrum, the AbioCor totally implantable artificial heart has been tested in humans for whom no other technologies were left to try, and whose deaths were expected very soon. Patients who were “cardiac cripples” clamored to become research subjects, viewing the artificial heart experiment as their last hope. One of those subjects experienced complication after complication. After his death, his widow sued the manufacturer of the device and the academic medical center where the research was conducted. She said that she and her husband had expected that if the experiment did not work, he would simply die. They did not anticipate the possibility of a twilight existence with such a poor quality of life. She claimed that her husband was not informed of this kind of bad outcome, which he viewed as a fate worse than death.8

Medical innovation is always attended by optimism—if it weren't, it would-n't happen. Almost by definition, innovations lack a reasonable expectation of (p.352) success. Yet the innovator's intention is to benefit the patient. Newsworthy innovations generally involve very siclc, even desperately sick, patients who are regarded (and may regard themselves) as having little or nothing to lose. The novelty of the proposal and the confidence of the innovator combine to produce overoptimism about success—usually in the absence of much supporting evidence.9 And then, apparently promising innovations, piloted out of necessity and lack of information, can easily become standardized by virtue of enthusiasm and by default. Scholars like John McKinlay and Thomas Chalmers acknowledged this in their classic writings well over twenty years ago.10

One of the key issues in the transition of a medical technology from new to standard is what actually should be counted as success. In transplantation, most of the time the alternatives are pretty poor choices. That makes transplantation better than nothing, better than lousy, and better than being dead. But a lack of satisfactory alternatives, by itself, doesn't necessarily make transplantation a good technology. Instead, it ensures that transplantation, like other innovative medical technologies, will always involve the maximum tolerable amount of uncertainty (see Cook essay). It also promotes what I call “desperation creep”: an inevitable, heartfelt, disturbing, and ever-expanding argument that the only thing that is good for patients is the speedy development of new technology. Taking time to move forward carefully is, by this argument, equated with enslavement to the “insensitive” demands of science, and with causing patients unnecessary suffering by denying them the chance to gamble on the new.

Surprisingly (to me at least), this portrait of innovations is generally not regarded as problematic; instead it is sexy. The lone ranger transplant surgeon is often a cowboy hire, known—and courted—for the ability and willingness to push the envelope and capture both attention and financial support. (Note the use of “lone ranger” and “cowboy” to describe not only physicians, in the Rouse essay in this volume, but also Mack Mahoney, in the Morgan et al. essay in this volume.) This portrait is especially seductive in surgery, a practice area that has historically been largely exempted from standardized research pathways. Our fascination with surgical innovation makes it frequently both prestigious and lucrative for major medical centers. Innovative practitioners are sought after and valued as teachers, mentors, and faculty stars. They participate in the same media mechanisms their patients use to make themselves visible, desirable, worthy of public attention. To give just one example, Dr. Ben Carson, a prominent Johns Hopkins neurosurgeon who specializes in separating conjoined twins, appeared in the movie comedy Stuck on You as the surgeon separating the conjoined brothers.

(p.353) Perhaps not surprisingly, however, as they grow older and more experienced, cowboy surgeons display an interesting tendency to look back on their innovations with some dismay. Toward the end of their careers as spectacular surgical innovators, primarily in organ transplantation, both Thomas Starzl and Frannie Moore became increasingly reluctant cutters.11 Moore, in particular, questioned the ethics of early efforts at surgical innovation, most of which resulted in patients' deaths. While acknowledging that successful medical innovations depend on just such failures, and that many or most such deaths were—like Jesica's—deaths that would have been inevitable without intervention, Moore worried, and rightly so, that innovations' growing pains had nonetheless inflicted suffering on those patients (see Lederer and Sharp essays in this volume).12 He would have understood why the widow of the artificial heart recipient sued.

Even the younger cowboys sometimes question the nature and pace of medical progress—though here, too, it is only failure that pricks the conscience. The movie-struck Ben Carson was a consulting member of the surgical team that undertook the unprecedented separation of adult craniopagus conjoined twins in Singapore in July 2003. After the Bijani sisters died in surgery, he publicly criticized the way the team had planned and undertaken the procedure.

The enormous public attention focused on the Bijani sisters provides yet another example of the optimism and simplification that seem to accompany medical innovations. Ladan and Laleh Bijani, adult twins conjoined at the head, were one of only a few sets of adult conjoined twins who aggressively sought separation. Born in Iran and committed to different careers, they had consulted with surgeons all over the world and had always been told that their anatomy made the attempt too dangerous. Finally, new imaging technology convinced Dr. Keith Goh, a neurosurgeon experienced in separating conjoined infants, that the attempt was worth making. The publicity-seeking propensities of Raffles Hospital, the for-profit hospital in Singapore where he practices, may have also had an impact.13

The Bijani sisters' story soon became world news. The hospital asked for donations on their behalf; the Iranian government helped pay for the procedure; and the international surgical team donated their services. When the twins bled to death in surgery from an unanticipated kink in their shared arteriovenous anatomy, an enormous public debate erupted about the twins' determination that death was preferable to remaining conjoined. Their vivid and dramatic story was too easily reducible to dichotomies: autonomy versus beneficence; patients' choices versus doctors' responsibilities; elective versus (p.354) indicated procedures; caution versus hope; freedom versus death. Yet most dichotomies are far too simple.

The story of the Bijani twins, like Jesica's story, exemplifies the complexity of uncertainty and optimism in medicine. The intent to benefit patients, the need to believe in the possibility of success, even the rewards (both spiritual and material) of altruism can deeply imbue providers with unwarranted optimism, affecting how they themselves think about the potential harms and benefits, how they present them to patients, and thus how the decision appears to and is discussed by everyone. This was as true in Jesica's case as it was for the Bijani twins.

Because it focuses so naturally on individual patients, donors, and surgeons, organ transplantation can readily promote a fallacious moral simplicity, attending to the trees while ignoring the forest. It is quite possible that one of the most important accomplishments of such “simplifying stories” is to deflect public attention from the inherent uncertainty of medicine (even though experienced patients themselves can appreciate it, as Rouse demonstrates in this volume); from close examination of the necessary social and bureaucratic complexities of health care delivery (see Cook and Gross essays in this volume); and from the problem of evaluating medical judgment (see Lerner essay).

While we watch the trees, the forest that surrounds us, unseen, represents not only the actual complexity of medical technologies but also the historical trajectory of innovation and the moral status of resource-intensive technologies in a landscape of unmet needs: How much is the extension of a life worth? The problem of how to address both the rights and interests of individual moral actors and the priorities and needs of populations and communities in health care (see Scheper-Hughes essay in this volume) is complicated by our collective interest in captivating, newsworthy cases above all else. Jesica Santillan, Jamie Fiske, and the Bijani sisters were “identified lives,” gaining attention while others in equal need of it could not. Indeed, the history and ethics of the allocation of scarce resources like transplantable organs has always depended on the simplifications made possible by focusing on identified lives (see Wailoo and Livingston essay in this volume).14

In the 1960s, before transplantation was common, bioethics got off to a bad early start in the form of “God committees,” which doled out access to a scarce resource: kidney dialysis. An infusion of federal funding for dialysis soon solved the problem of how to choose who was “worthy” of that life-extending, but physically and psychologically demanding, halfway technology. But by that time, the components of the choice—and the way petitioners (p.355) for access sought to convince the gatekeepers of their “worthiness”—had become all too familiar in the transplant arena (see Rhodes, Gross, and Lederer essays in this volume).15

These days, the requirements that would-be organ recipients must meet include money, assertiveness, medical suitability, having a connection to primary care, compliance, social support, and the promise of a sufficiently stable future to maximize the life of the organ. Not surprisingly, these requirements translate into a psychosocial screening process that tries hard to avoid the moral pitfall of social worth determinations but still manages to seem, in practice at least, like a job interview in which the interviewers worry about whether the applicant will “fit in.”

And if “a Henry David Thoreau with bad kidneys” hasn't got much of a chance to make a good impression on the judges, and the prostitute or the playboy even less, well then, the young and the photogenic, innocent victims of life's unfairness, always seem to do fine.16 Their desperation can make us— potential donors, benefactors, surgeons, institutions, the public at large—feel generous and noble, both when we give and when we approve of what is given. Giving something to support the identified lives of transplant recipients is, apparently, far more satisfying than paying taxes, or writing a check to a charity, or improving sanitation and the public water supply, or making prenatal care and vaccinations available to all in need.

Thus, the public is becoming accustomed to the heroic stories of living donor transplantation: the North Carolina teacher who gave a kidney to her student; the New York physician who gave a kidney to her patient; the couples who give kidneys, or liver lobes, or lung lobes, to each other's spouses; the North Carolina man who donated bone marrow to both of his brothers; the wife whose donation of a kidney to her husband has saved their marriage; the friends who are organ donor and recipient; the donor and recipient who become friends. In the 1980s, when talking with an organ procurement official in Massachusetts, I was given a promotional pen stamped with the slogan, “Organ donors recycle themselves.” Today, organ procurement organizations regularly urge people to become organ and tissue donors by means of national campaigns featuring “many really moving stories from around the country.”17

Jesica's story is such a one, despite—or perhaps because of—her death. As the Raleigh News and Observer put it in February 2004: “Save for one horrible mistake a year ago Saturday, Jesica Santillan might have lived as a triumph of community support and medical science—an immigrant child doomed to die from a congenital heart defect, rescued by a heart-lung transplant.”18 That (p.356) quote alone is a perfect example of how transplantation promotes a focus on the identified life, overstates the potential benefits and understates the potential harms of a halfway technology, and creates a neatly oversimplified dichotomy of death and rescue that fails to acknowledge the complexity of the moral framework of health care choices.

Difficult decisions always involve more than the dyad of doctor and patient. Many people, institutions, and entities had stakes in Jesica's story, for a variety of reasons. Her celebrity gained her a benefactor;19 her benefactor used her celebrity to ensure that Duke University Hospital acknowledged its error in her case and reformed its procedures relating to transplantation (see Morgan et al. and Diflo essays in this volume). The “firestorm of publicity” surrounding Jesica's death may have temporarily helped sidetrack efforts to limit awards in medical malpractice lawsuits, and even to call attention to the need to prevent medical errors in hospitals.20

And at least in part because of Jesica's story—but also because of the increasing numbers of telenovelas on North Carolina television and tiendas and taquerias all across the state—medicine and medical education in North Carolina has increasingly taken account of Latino culture, customs, and language over the last five to ten years. Nonetheless, familiar and unanswered questions continue to appear in this new cross-cultural context. To give just one example, after Jesica was declared dead by neurological criteria, her family requested a second opinion about the diagnosis. It appeared from newspaper accounts that the explanation given to the family about how the determination of brain death is made, what exactly brain death is, and what it means, was poor. Determining death by neurological criteria generally requires the separate assessments of two physicians, according to specific physiological measurements, after a specified interval to ensure that the findings are not being affected by any medication. Thus, a detailed and sympathetic explanation of “brain death” might have showed the family that a second opinion had, in a way, been obtained; instead, the hospital simply refused the request.

This story is familiar because, ever since “brain death” was established as a diagnosis in the 1960s—for reasons intimately connected both with medicine's increasing technological “success” and with the need for transplantable cadaver organs21—health care providers and patients alike have had trouble envisioning it as “real” death. Indeed, it has been well demonstrated that health care providers' own confusion leads to poor explanations, careless language (“She's brain-dead but we're keeping her alive on the machines till the family can get here.”), and misunderstanding by families and (p.357) the general public.22 Death itself is a familiar question that has not been answered.

Given this evidence of complexity in Jesica's story—and even some acknowledgment of that complexity as a means of beginning to effect change-perhaps it could be argued that, contrary to my thesis, looking hard enough at individual trees can lead us back into sight of the forest. I wish it were so. Though it can be a powerful spotlight, the artificially simplified “stakeholder” perspective on morally freighted cases and issues seems to serve principally to maintain a problematic overoptimism: things could have gone right, lives would have been saved, all can really be perfect.

Yes, compelling cases with “mediagenic” patients like Jesica do indeed command public attention. But that attention is often largely in the form of advocacy and punditry. Compelling cases are just as lousy as lawsuits as a means of designing anything that is lasting or of substance—safe automobiles, ethical codes for physicians,23 or, in this case, morally sound public policy that addresses health care costs and needs. Instead, compelling cases usually place the public and policymakers squarely on the pendulum that seems constantly to swing between promoting and curbing medical technology.24 The pendulum view sees technology as either perfect or perfectible: fix the trees and the forest will go away.

Bioethics scholars—myself included—are always hoping that working in the trees is going to get us a better view of the forest. But bioethics scholars are like everyone else: we generally find it easier and more congenial to contemplate a tree. Remember that bioethics has been struggling for some time now to address complicated, unwieldy, and long-unanswered organizational and policy questions about health and social justice. And we haven't (or at least I haven't) yet figured out how to “unsimplify” a discussion that has already gone public—how to move beyond advocacy and punditry to generate public interest and policy progress in system-level considerations, like access and cost in health care.

This is hard stuff, but as a society we defer the discussion at our peril. Indeed, not only are these questions not going away, they are increasingly globalized. Medical tourism, and attendant concerns about medical citizenship as described throughout this volume, now complicate health care allocation decisions worldwide, forcing us into international discourse about global health as surely as do air travel-fueled fears of pandemics. In the United States, we continue to notice patients who travel here for health care and are viewed as consuming scarce resources, like the undocumented immigrants receiving or awaiting donated organs, or as jumping the queue, like the (p.358) transplant recipient whose Saudi-funded operation recently caused controversy in California.25 But the Bijani sisters were medical tourists, too. These days, patients from all over the world move all over the world seeking scarce and costly treatments that are still cheaper or more available than what they can get at home. Others, like the Bijani twins, travel in search of medical innovation. Still others travel to enroll in clinical research.26 Seeking global discourse on matters such as these may—like transplantation itself—appear a luxury in the face of enormous worldwide disparities in basic health care and health.27 But Jesica's story, if it teaches us anything, shows us that nothing about health care can truly be isolated from the forest of familiar questions we have not yet navigated successfully. Every society on earth addresses these familiar questions about death and life; we need to start learning from one another's stories.

Finding a different focus on what matters in health care and in life-developing the capacity to get beyond our dependence on identified lives to fire our moral imagination and activate our sense of moral obligation-should ultimately lead to changes in individual and public decision-making about the development, promulgation, and use of resource-intensive halfway technologies like transplantation. Uncertainty and tragedy are inescapable, in health care and in life. Instead of pretending to escape uncertainty and tragedy, we have to face them. Unless we acknowledge that our task is not perfection, we may keep trying too hard to solve the wrong health care problems.

Can we ever get to that discussion by talking about Jesica? We've seen that identified lives like Jesica's are usually shaped and flattened into the simple coin of public discourse. But identified lives can also be seen as rich, detailed stories, with narrators who have points of view, minor characters with stories of their own, and intricately woven threads leading outward and upward to other stories and to unanswered questions. All humans trade stories, and trade in stories. So perhaps we could, with a little extra effort, fashion Jesica's story into a narrative that leads us, by new paths, to some new answers.

You, the reader, have by this time perused the essays in this volume, all of which tell different versions of Jesica's story. What should we do with her story now? You tell me.

Notes:

(1) . Clark C. Havighurst and, “Liver Transplantation in Massachusetts: Public Policymaking as Morality Play,” Indiana Law Review 19 (1986): 955–87.

(2) . Melissa Draper, “Jesica's Mom Has New TV Role,” Raleigh News and Observer, January 2, 2004, N6.

(3) . Lewis Thomas, Late Night Thoughts on Listening to Mahler's Ninth Symphony (New York: Viking Press, 1983).

(5) . Geov Parrish, “Defending My Life,” Seattle Weekly, May 31, 2001, 17–23, reprinted in The Social Medicine Reader, 2nd ed., vol. 2, Health Policy, Markets, and Medicine, ed. J. Oberlander et al. (Durham: Duke University Press, 2005), 119–27.

(6) . S. J. Diem, J. D. Lantos, and J. A. Tulsky, “Cardiopulmonary Resuscitation on Television—Miracles and Misinformation,” New England Journal of Medicine 334 (1996): 1578–82.

(7) . Maria Newman, “Schiavo Dies Nearly Two Weeks after Removal of Feeding Tube,” New York Times, March 31, 2005.

(8) . Stacey Burling, “Life, but at What Cost?” Philadelphia Inquirer, September 29, 2002; Stacey Burling, “Mechanical-Heart Patient Comes to Regret His Life-Saving Choice,” Philadelphia Inquirer, July 14, 2002; Stacey Burling, “Widow Sues Artificial-Heart Maker” Philadelphia Inquirer, October 17, 2002.

(9) . Atul Gawande, “Desperate Measures,” New Yorker, May 5, 2003, 70–81; Nancy M.P. King, “Experimental Treatment: Oxymoron or Aspiration?” Hastings Center Report 25 (4) (1995): 6–15.

(10) . and Gail E. Henderson, “Treatments of Last Resort: Informed Consent and the Diffusion of New Technology,” Mercer Law Review 42 (1991): 1007; Nancy M. P. King, “The Line between Clinical Innovation and Human Experimentation,” Seton Hall Law Review 32 (2002): 573–82.

(11) . Gawande, “Desperate Measures.”

(12) . Francis D. Moore, “The Desperate Case: CARE (Costs, Applicability, Research, Ethics),” Journal of the American Medical Association 261 (1989): 1483–84.

(13) . Nancy M. P. King, “The Stories We Tell Ourselves,” Hastings Center Report 33 (5) (2003): 49.

(14) . Guido Calabresi and Phillip Bobbitt, Tragic Choices (New York: W. W. Norton, 1987); D. A. Redelmeier and A. Teversky, “Discrepancy between Medical Decisions for Individual Patients and for Groups,” New England Journal of Medicine 322 (1990): 1162–64.

(15) . George Annas, “The Prostitute, the Playboy, and the Poet: Rationing Schemes for Organ Transplantation,” reprinted in Oberlander et al., eds., Health Policy, Markets, and Medicine, 150–57.

(16) . Annas, “Prostitute,” 2005, quoting Sanders and Dukeminier (“a Henry David Thoreau with bad kidneys”); the reference to prostitutes and playboys is from ibid.

(17) . Draper, “Jesica's Mom Has New TV Role.”

(18) . Sarah Avery and Michael Easterbrook, “A Year of Grief, Changes,” Raleigh News and Observer, February 8, 2004, A1.

(19) . Nancy Rommelmann, “In Jesica's Name,” Independent Weekly, May 19, 2004 (p.360) (reprinted from “Grief's Gravity,” Los Angeles Weekly, February 20–26, 2004, http://www.laweekly.com/features/1973/griefs-gravity/.

(20) . Tom Clavin, “How Can You Protect Yourself?” Parade magazine, May 23, 2004, 4–7.

(21) . A. M. Capron and L. R. Kass, “A Statutory Definition of the Standards for Determining Human Death: An Appraisal and a Proposal,” University of Pennsylvania Law Review 121 (1972): 870.

(22) . S. J. Youngner, R. M. Arnold, and R. Shapiro, eds., The Definition of Death: Contemporary Controversies (Baltimore: Johns Hopkins University Press, 1999); G. Greenberg, “As Good As Dead,” New Yorker, August 13, 2001, 36–41.

(23) . Barber v. Superior Court, 195 Cal. Rptr. 484 (CA Ct. App. 1983).

(24) . A. Mastroianni and J. Kahn, “Swinging on the Pendulum,” Hastings Center Report 31 (3) (2001): 21.

(25) . On undocumented immigrants receiving or awaiting donated organs, see Mark Bixler, “Illegal, Uninsured, but Alive,” Atlanta Journal-Constitution, April 25, 2004; on the Saudi-funded operation and the controversy in California, see Charles Ornstein, “Hospital Halts Organ Program,” Los Angeles Times, September 27, 2005.

(27) . Paul Farmer, Infections and Inequalities: The Modern Plagues (Berkeley: University of California Press, 1999).