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The Gift of Life: Ethical issues in organ transplantationby James F. Childress, PhD, Charlottesville, VA Exactly 25 years ago, I was seduced by the emerging field of biomedical ethics, or bioethics, which explores ethical issues in the life sciences, medicine, and health care. This enticement occurred during my second year of teaching at the University of Virginia, when law and medicine faculty set up an interdisciplinary seminar on Artificial and Transplanted Organs and needed a faculty member from the humanities to round out their roster. Two questions dominated our discussion of ethics and public policy in organ transplantation: How can we increase the supply of transplantable organs? How can we distribute available organs in an effective, efficient, and just way? These two questions continue to dominate ethical and policy debates. Here I will address only the first question, while noting that the two are interconnected, since increasing the supply of organs could reduce some of the dilemmas in distribution, and the public's perception of the fairness of the allocation scheme appears to influence its willingness to donate organs. Acceptability and preferability I ask you to grant me two assumptions even though they are not uncontroversial: (1) We need to increase the supply of organs in order to save lives and/or enhance the quality of those lives, and (2) our societal efforts to increase the supply of organs should remain within certain ethical boundaries. The first assumption may be problematic for some of you, depending on your view of the overall success/failure and costs of organ transplantation. No doubt there are problems, as well as excessive media hype, but there is no single entity labeled "organ transplantation." However, let us grant, at least, that kidney transplantation should be expanded to extend lives at a reasonable quality and to save the End-Stage Renal Disease Program considerable money over time. I also believe that several other transplants pass a reasonable benefit-cost analysis, but all we need for this discussion is to assume that some cadaveric organ transplants should be performed and that we don't have enough cadaveric organs to perform all of them. The second assumption is that our efforts to increase the supply of organs should respect certain ethical boundaries or limits. The goal of increasing the supply of cadaveric organs will not justify every conceivably effective means of doing so—the ends do not always justify the means. Even if you concede that point, we will still have, I am sure, vigorous debates about where ethical boundaries or limits should be set. Assessments of actual or proposed laws and policies often appeal to general moral principles or values, such as respect for personal autonomy, non-infliction of harm, voluntarism, altruism, and communal solidarity, all of which are widely recognized in our pluralistic society. In what follows, I will appeal to such general moral norms to support judgments of ethical acceptability and ethical preferability. Both types of judgment are important. For instance, even though two or more laws or policies may be ethically acceptable, because they pass our minimal ethical screening tests, one of them may be ethically preferable because it promotes communal altruism. We still have to ask which of these policies is politically feasible. By this I don't mean only which policies can survive in the legislatures and the courts, but also which can elicit cooperation from institutions, professionals, and individuals and their families. Eliciting cooperation is very complicated because the human body is associated with various emotions, sentiments, symbols, and beliefs, and tied to various rituals and communal practices. Policies that appear to be feasible from a strictly rationalistic standpoint may turn out to be ineffective and even counterproductive because they do not adequately attend to the psychosocial significance of the human cadaver—hence, the limited success or outright failure of some of the policies implemented over the last decade. In addition to being too rationalistic, our policies are often too individualistic, formalistic, and legalistic. A case study of our system You will certainly be familiar with the following case because one of the recipients of the donated organs was famous. However, I want to present it from the standpoint of the organ source/donor, whose story is not so well known. Indeed, I have read it in only one brief account in the sports section of the Washington Post (August 4, 1995, F2). In early June 1995, a popular, athletic Texan in his twenties, who was still trying to decide what he wanted to do and to be, died unexpectedly; an aneurysm took his life. "In death," as one newspaper sports page noted, "he gave half a dozen people their futures, among them a truck driver, a farm manager, a backwoods-resort operator and an American legend named Mickey Mantle." Newspaper reporters managed to identify who had provided the organs, but, at the family's request, did not name him in the report or to the recipients. The mother explained the family's decision to donate: "Once his soul and spirit is gone, nothing is left. His body is of use to somebody else only in this way. It never even crossed my mind not to donate. To me, it's the decent thing to do. It's the thing we should do." Let's consider the act of donation in this case to answer some questions about our system of organ procurement. First, who is an "organ donor?" As obvious as this question sounds, the answer is far from obvious. By the term "donor," do we refer to the decision maker (i.e., the one who decides to donate organs), or to the cadaveric source of the organs themselves? Obviously, these two may be the same, but the decision maker may not be the source, and the source of the organs may never have been competent to make a decision about donation or may never have made a decision to donate. For instance, a dead child is the source of organs, but is not himself/herself the donor. Likewise, someone who sells an organ is not a donor, but rather a seller or vendor. I have long protested the promiscuous use of the terms "donor," "donation," and "gift" in imprecise and often misleading ways, but my protest may well be fruitless.1 My protest is important, however, because these terms refer to a certain kind of social-moral practice, which has an extremely high value as well as its own internal logic. We have to be careful not to transfer its moral aura indiscriminately and inappropriately to other social-moral practices. Other examples of problematic terms in organ transplantation include "harvesting," "salvaging," "procurement," and "retrieval" of organs, each of which has ambiguous and even controversial implications.2 Second, who was the donor in this case? From the brief report I read, it appears that the mother was the donor. The mother said, "It never even crossed my mind not to donate." Now she apparently made her decision to donate on the basis of a felt obligation ("the decent thing to do") because the organs were no longer valuable to son or to her—they were now valuable only in their use for others. Thus, the donation appears to have been her decision. At least from the case report, it appears that she was the donor, and her son only the source or provider of the organs. We have no indication that he had signed a donor card or had otherwise indicated that he wanted to donate his organs. Let's suppose, however, that the mother could have rightly claimed that donation is what her son wanted. If he had expressly told her that he wanted to donate his organs, even though he didn't sign a donor card, then he was the donor as well as the source, and his mother merely conveyed or expressed his wishes. She was simply the recorder of his prior donation. In the absence of any prior oral or written indication of his preferences, his mother could still have argued, not implausibly in this case, that he would have wanted his organs donated. After all, just a week before his death he was at a nearby lake when a man who was trying to swim to an island started to sink, and, as a former lifeguard, he swam out a long distance and pulled the man safely to shore. His mother could have constructed his willingness to donate on the basis of the way he lived, for example, by taking his heroic act a week before as indicative of his moral character and of his desire to save others, even at some risk to himself. Third, how does this case fit with contemporary law and practice? In view of the laws and practices that have evolved in the U.S., we should not be surprised that the mother was the actual donor of her dead son's organs. The law establishes who has dispositional authority over the cadaver (and its parts) and within what limits. In theory it could recognize various rights holders and assign them various rights (and responsibilities). The rights holder could be, for example, the individual while alive, the family after an individual's death, or the community at large. The rights held could include rights to use, to destroy, to transfer by any means, to transfer by gift but not by sale, to sell, and so on. Such rights could thus be limited or full, parallel to rights in property. Regarding rights and the cadaver What exactly is our legal structure of rights regarding the cadaver? As organ transplantation emerged in the 1960s as a legitimate medical option, mainly for patients with end-stage renal disease, our laws were marked by inconsistencies regarding rights holders, whether the individual while alive or the family after the individual's death. Transplantation really could not proceed or succeed without consistency and even uniformity in laws governing the transfer of organs. As a result, the Uniform Anatomical Gift Act (UAGA) was formulated and then rapidly adopted by all 50 states and the District of Columbia.3 That law established a "gift" or "donation" framework for the transfer of organs. Within that framework, competent individuals have the right to determine what will be done with their organs after their deaths. In the absence of a valid expression of the decedent's prior wishes, the family legally can decide whether to donate his or her organs. The famfly's right to decide is a default mechanism. As a matter of social practice, in contrast to the law, the default mechanism has itself become primary—individuals rarely sign donor cards, organ procurement teams rarely find them. Some organ procurement organizations (OPOs) report never having obtained an organ on the basis of a signed donor card. OPOs and others virtually always consult the family if available, and, in cases of conflict, which occasionally arise, between the decedent's expressed wish to donate and the family's opposition, OPOs yield to the family for misguided legal reasons and understandable ethical reasons. The common fear of legal liability is misguided because the UAGA provides blanket immunity from civil and criminal liability for good faith actions on the basis of signed donor cards. The ethical reasons include concerns not to increase the family's personal trauma by neglecting or overriding its wishes in tragic circumstances, and not to jeopardize organ procurement through creating an image of professional "vultures" taking organs over the protests of a grieving family. In the U.S., then, the transfer of solid organs occurs by express donation by an individual and/or family. (Express donation laws also operate in such countries as Australia, Canada, Denmark, Holland, Japan, Sweden, Turkey, the United Kingdom, and most of Central and South America.) While the law in the U.S. is primarily individualistic, practice is primarily social, with the individual viewed as part of a small community, the family. One ethical and practical problem is bringing the two together for educational and other purposes. Why don't individuals donate by signing donor cards? According to several opinion surveys, fewer than 50 percent of American adults are very or somewhat likely to donate their organs after their deaths (Gallup Organization, 1983, 1985, 1987), and even fewer actually sign donor cards or other documents of gift. Perhaps this figure shouldn't be too surprising since only about 20 percent of the decedents leave a will. The specific reasons for failure to sign donor cards include lack of thought about donation and reluctance to face the prospect of death. Other significant reasons reflect distrust, or limited trust, in the system: Many people worry that if they sign a donor card, physicians might act prematurely to obtain their organs before they are really dead or might even hasten their deaths to gain their organs. In contrast to current figures, in 1968, around the time of the first heart transplant, 70 percent indicated a willingness to donate. Why the shift? The 1970s brought increasingly adversarial relations between the public and medical and health care professionals, as witnessed by the dramatic increase in malpractice suits. Suspicion has replaced trust. In addition, the stated willingness to become organ donors is even lower among minority groups, who perceive themselves to be on the margins of the system and to have even less reason to trust it.4 Inquiry and choice Supporters of organ transplantation have proposed ways to encourage voluntarism or altruism on the part of individuals while alive. One policy is "routine inquiry" directed at individuals in various settings. Concerns have arisen about whether it is appropriate (as well as effective) to inquire in certain settings. To many it appears both inappropriate and counterproductive to ask routinely of patients entering the hospital for an appendectomy, for example, whether they have signed a donor card, as recommended in the amended UAGA (1987) and enacted by some states. However, few people have major objections to routine inquiry in other contexts, such as obtaining a driver's license. Another proposal is "mandated choice" by which individuals would have to indicate, perhaps when they obtain a driver's license or file income tax forms, if they want to donate and their choice would be entered into a national registry.5 But, according to the survey data about why people do not sign donor cards, many individuals, if forced to choose, would check "no," because they are afraid of being on record as donors of organs, not because they oppose their family's donation of their organs after their deaths. However, their "no" would then preclude familial donation. Hence, it is likely that a policy of mandated choice would thus reduce rather than increase the number of acts of donation. I have long made this claim but there is now some empirical evidence to support it. In Texas, mandated choice has resulted in a refusal rate of 80 percent.6 And those refusals block possible familial decisions to donate. It is likely that similar blocks occur in Virginia, where applicants for new or renewed drivers' licenses are asked whether they are organ donors, and they are given the options of "yes," "no," and "undecided." The choice is then imprinted on the license itself. Perhaps the category of "undecided" will be selected often enough to keep open familial options. Both routine inquiry and mandated choice arguably concentrate too much on the donor card. They confuse the requirement of respect for individual autonomy, a legitimate requirement of both morality and law regarding the transfer of organs, with the promotion of personal autonomy and even with a particular exercise of autonomous choice. Proponents of mandated choice fail to appreciate that individuals may choose to let others decide after their deaths what will happen to their organs. This waiver of the right to choose for themselves may itself be an autonomous choice. Extending this point, another possible policy is to allow individuals to designate surrogate decision makers who can express their values after death.7 Individuals may be more willing to designate a decision maker whom they trust than to sign a document of gift that might put them at risk at the hands of strangers in large, impersonal, bureaucratic institutions that appear eager to gain organs. This proposal has a parallel in advance directives regarding life-sustaining treatment in case of incompetence. Why don't families donate the organs of dead relatives? In the U.S., as in most other countries, the family is the primary donor of cadaveric organs. Opinion surveys indicate that individuals are more willing to donate the organs of family members, particularly if they know the decedent's wishes, than they are to donate their own organs by signing donor cards (Gallup Organization, 1983, 1985, 1987, 1993). The main bottleneck in obtaining cadaveric organs thus appeared to be the failure of health care professionals to ask families about donation when a relative died. The problem was construed as a shortage of askers rather than a shortage of familial givers. In this context, Arthur Caplan proposed "required request" directed at the decedent's next of kin.8 This policy has now been enacted in the U.S. by most state legislatures, mandated in federal legislation for all institutions receiving Medicare or Medicaid funds, and required by the Joint Commission on Accreditation of Healthcare Organizations.9 Despite required request, which once appeared to be so promising, the number of acts of donation of solid organs each year remained relatively constant for several years, at 4,300 to 4,850, with most increases occurring as a result of changes in the criteria of donor eligibility (e.g., accepting donations from older persons whose organs would not have been used earlier). However, the overall donor pool has shrunk for various reasons, including the decline in automobile-related deaths and the spread of the human immunodeficiency virus (HIV). In this context, "slow increases in the number of donors, or having the number of donors hold steady ... suggest that the present level of donation may be higher than it would be without the laws."10 Required request policies may also have had positive, indirect effects in making requests for donation more routine in hospitals. Nevertheless, many have wondered whether the reluctance of physicians and other health care professionals to make such requests accounts for the modest direct effects. According to an important recent study, even if health care professionals remain reluctant to ask, they generally do ask. In close to 90 percent of the cases in which the decedent could possibly provide transplantable organs, some member of the health care team asked for permission to use the decedent's organs. However, only 46.5 percent of the families asked agreed to donate organs (and only 34.5% agreed to donate tissue). This study did not address the question of whether professional reluctance, perhaps even on the moral grounds that they do not want to burden the grieving family, may persist in when and how professionals ask the family.6 One proposal to overcome professional reluctance is "routine referral," or "required referral," which would require that institutions and health care professionals routinely notify a trained procurement team in circumstances in which cadaveric organs and tissues might be available.11 Presumably such a trained team could be more effective while at the same time assisting the family in its grieving. Other methods of obtaining organs Possible methods of transferring cadaveric organs and tissues include: (1) express donation by the individual while alive or by the next of kin after his death; (2) presumed donation, with consent to donation presumed of the individual while alive and/or of the next of kin; (3) routine removal or salvaging (with the possibility of opting out); (4) expropriation or conscription (perhaps with the possibility of conscientious refusal); (5) abandonment or failure to claim bodies and parts; and (6) sales. Having now considered the first method, I will try to show that, for solid organs, all of these other possible modes of transfer suffer from one or more of the following defects: They are ethically inferior, ethically unacceptable, or politically infeasible. Sometimes proposed policies are ineffective or counterproductive and are thus problematic on both ethical and feasibility grounds. All of these methods of transfer play some role in access to living or cadaveric organs, tissues, and fluids. For example, in the U.S., express donation is virtually the only method of transferring solid organs, while presumed donation or routine removal is used for corneas in several states. Sales remain prevalent in the transfer of semen for artificial insemination, and abandonment has been a common mode of transfer of tissues for purposes of research. While expropriation or conscription is rare and more controversial, it appears in legally required autopsies and tests for the use of illicit drugs. Presumed donation or routine removal. Laws authorizing presumed donation or routine removal (frequently called routine salvaging) have been adopted for corneas in several states in the U.S. and for organs and tissues in several countries, including Austria, Belgium, Finland, France, Norway, Portugal, and Singapore. These laws authorize the removal of organs or tissues, usually without familial notification, in the absence of the decedent's prior and/or the family's current explicit dissent. They thus involve "opting out" rather than "opting in"—that is, individuals and, in principle, their relatives must take affirmative action to stop the process of donation or removal rather than to initiate it. How should we interpret and evaluate such laws? Presumed donation and routine removal are often considered interchangeable, but in fact their moral bases are quite different. A policy of presumed donation assumes that the individual (and/or the family) owns and thus has dispositional authority over cadaveric organs and that the decedent's prior failure (or the family's current failure) to dissent constitutes consent. By contrast, routine removal presupposes that the society has a right of access to cadaveric organs and tissues because it owns them or because individuals and families have an enforceable social duty to provide them. Such a communitarian approach to organ removal may allow opting out for various reasons, such as conscientious objection.12 In order to identify the operative moral basis of laws that authorize removal without express consent, it is necessary to look beyond society's rhetoric to determine what occurs in practice. If the policy is really presumed donation, then society should undertake vigorous efforts to ensure public understanding and voluntariness. If, however, the policy is routine removal, public understanding and voluntariness are superfluous, even though they may be sought for practical reasons. The main objections to routine removal rest on what William May calls the "principle of extraterritoriality," which holds that even the deceased individual is not reducible to the needs of the social order.13 Many people concede that presumed donation is ethically acceptable in principle but raise questions about its practice. For instance, ethically acceptable presumed donation, based on understanding and voluntariness, may actually be less cost-effective than enhanced and redirected educational efforts for express donation. Furthermore, many view express donation as ethically preferable to presumed donation because it manifests and supports active altruism.14 Objections to the presuppositions of routine removal may in part explain why the rhetoric of presumed donation is so widespread. And uneasiness about society's dispositional authority over cadavers, or about the meaning of an individual's (or family's) failure to dissent, may account for the fact that actual practices of organ procurement are similar in most countries, despite their different legal frameworks.15 For example, in most countries with so-called presumed consent, professionals regularly ask the family or follow the family's known wishes, just as they do in countries with express donation. Among European countries with presumed donation or routine removal, only Austria, with its long tradition of authorizing autopsies on all persons without requesting permission, does not in practice notify the next of kin.16 Neither presumed donation nor routine removal appears to be politically feasible in many social contexts, including our own. In light of widespread public opposition in the U.S. to the removal of organs on the basis of presumed consent, such a policy would probably reduce rather than increase the number of donated organs (as has happened under mandated choice). The attitudes of distrust that now obstruct express donations would probably lead individuals to remove themselves from the list of presumed donors and thereby preclude familial decisions to donate. However, supporters of presumed donation note that several states already have laws that authorize the removal of corneas, without consent, by medical examiners or coroners who examine bodies following accidents or homicides. These laws have survived constitutional challenges in some states, even when they do not require notification of or consent from the next of kin. Furthermore, they have been effective. For example, after Georgia adopted presumed donation, cornea transplants increased from 25 in 1978 to over 1,000 in 1984.3 Such laws may survive without major vocal opposition because of different views about different body parts (corneas versus solid organs) or because the public is largely unaware of these laws. If the last reason holds, then presumed donation is, I believe, ethically invalid because of a lack of 'understanding on the part of the putative "donors," whose silence is construed as passive consent to donation. Under such circumstances, the policy touted as presumed donation is actually closer to routine salvaging or perhaps even to expropriation with a right to refuse, perhaps on conscientious grounds. Conscription or expropriation. Public health considerations often justify autopsies to determine the cause of death, even against the conscientious objections of adherents of religious groups. Strong communitarian views extend such arguments to justify conscription or expropriation of cadaveric organs.17 Some ethicists contend that the good of persons needing transplantable organs and the good of the community can justify the removal of organs even against the will of the decedent and the next of kin, because the cadaver lacks autonomy and cannot be harmed. Respect for the beliefs of the decedent while alive, and his sociocultural practices regarding burial, does not outweigh significant therapeutic benefits to recipients of organ transplants.18 I strongly agree with the critics of organ conscription who appeal to the "principle of extra-territoriality," and contend that individuals may be wronged (by having their will thwarted after their deaths) without being harmed, and note that sociocultural practices of disposing of bodies remain very important for various communities. Furthermore, in a liberal society, respect for autonomous choices made prior to death should not be overridden if there are acceptable and effective alternatives. Abandonment. Another possible mode of transfer of organs and tissues is abandonment, that is, a failure to claim bodies and their parts. For example, following some medical procedures patients simply abandon their excised organs, tissues, blood, urine, and the like, which may under some conditions be used by researchers. This mode of transfer of body parts has been widely debated in the case of living sources: for instance, the famous Moore case in California in which researchers developed a profitable cell line, named "Mo," from a spleen removed during Mr. Moore's treatment for hairy cell leukemia. It also appears to characterize statutes that authorize the removal and use of organs and tissues from unclaimed bodies. In principle, this mode of acquisition of cadaveric organs and tissues could be ethically acceptable, but it will not significantly increase the supply of organs or tissue for transplantation. Furthermore, strict rules are needed to ensure that the body is actually unclaimed. Sales. In our society, any time there is a disparity between supply and demand, the market appears to offer a feasible solution. Why not for organs? While setting a legal framework for donation in the late 1960s, the original UAGA did not prohibit the sale of organs because the Commissioners on Uniform State Laws did not want to establish an absolute barrier to sales. They apparently believed that this matter could be handled by local medical communities.14 Hence, for many years the sale of organs and tissues was arguably not illegal in most of the U.S. In 1983 there were several hearings on organ transplantation before congressional committees and subcommittees. In April 1983, in hearings on organ transplants before then-Congressman Albert Gore's Subcommittee on Investigations and Oversight of the House Committee on Science and Technology, I proposed in passing that Congress might consider prohibiting the sale of organs for transplantation. Congressman Gore interjected: "Dr. Childress, you recommended a legal prohibition on the sale of organs and body parts. You don't think that there is a sufficient record of such practices to warrant legislative action at this time, do you?" I responded: "I have no evidence to suggest that there is. I think in a way this would be a preemptive action to avoid some problems down the road, in part because of the increased publicity about the need for organs." While indicating that he and his colleagues would consider such a ban, Congressman Gore stressed that they were "becoming increasingly skeptical of preemptive laws."" Within a matter of months, as reflected in several subsequent hearings and in public statements, Congressman Gore, along with several of his colleagues, had changed his mind, not because of arguments offered by ethicists and others who testified, but because of a proposal by an ex-physician in Virginia to set up a brokerage firm to purchase organs, particularly in the third world, for transplantation in the U.S. Outrage was instantaneous and widespread. As a result, the 1984 National Organ Transplant Act (NOTA) made it illegal "for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce." Several states also prohibited the sale of organs. It is not illegal in the U.S. to sell blood, sperm, and ova. No country is reported to allow the sale of cadaveric organs, even though stories circulate about sales in some countries. What happened between 1968 when the UAGA was promulgated, without a prohibition of the sale of organs, and 1984 when NOTA and several states prohibited the sale of organs? When organ transplantation really started to gain momentum in the early 1980s, particularly as a result of improvements in immunosuppressive medication, the problems of scarcity became more troubling, the growth potential more obvious, and the limitations of the system of voluntary, altruistic donations more evident and troubling. The legal prohibition of sales in 1984 did not silence the discussion, and numerous proposals have emerged since then to institute some sort of market in organs, at least on the side of procurement if not on the side of distribution. These proposals have in part reflected the 1980s' style of competition, markets, and deregulation. They have also reflected concern about stagnation in organ procurement, since organ donation had been expected to increase substantially as a result of laws and policies of required request directed at decedents' families. However, to take just one example, kidney transplantation experienced substantial increases for five consecutive years from 1981 to 1986 (increases of 475, 754, 856, 1,027, and 1,280), but then it declined slightly in 1987 and has been somewhat stagnant, with occasional bursts of growth. A significant increase in kidney transplants in 1990 resulted mainly from changes in the criteria of eligible donors, rather than from improved rates of donation from previously eligible donors. And the small increase in kidney transplants in 1991 resulted from additional donations from living donors. Further increases follow similar patterns.20 Two main arguments support the transfer of organs and tissues by sales. One is based on the principle of respect for autonomous choices, the other on the principle of utility or maximization of human welfare. The first argument, a libertarian argument, holds that autonomous agents should have the liberty to dispose of their body parts in whatever ways they choose, whether by donation or sales.21 The second argument, a utilitarian argument, holds that society should accept transfers of cadaveric body parts by sales as the most effective and efficient way to increase the supply of organs that can save human lives. The main objections to the libertarian argument for sales rest on several moral claims: (1) There are the risks to living vendors or to others whose parts may be transferred by vendors after being killed or allowed to die; (2) there are concerns about the vendors' lack of voluntariness, especially if they are poor, economically vulnerable, and subject to exploitation; and (3) buying and selling organs involves commodification, that is, treating human body parts as commodities, and thus depersonalizes and degrades vendors and the society.22,23 According to defenders of organ sales, societal regulation rather than prohibition could reduce risks and establish voluntariness, and, they believe, commodification is a vague and speculative concern. However, opponents contend that societal regulation itself, even if successful on the first two points, legitimates commodification and thus violates fundamental societal values. The main rejoinders to the utilitarian argument hold that there are other effective, ethically acceptable (and even ethically preferable) ways to increase the supply of organs. Shifting to sales, they contend, would be costly, would probably drive out many donations, and could have serious negative effects through promoting commodification. In addition, critics question whether sales would actually increase the supply of organs. Proponents of markets stress that potential donors now fail to act because of inertia, inconvenience, mild doubts, and distaste in thinking about the transfer of their (or a relative's) cadaveric body parts, and that compensation will overcome these grounds of resistance.24 It is unclear whether fundamental attitudes of distrust will yield so easily to monetary incentives. Fears of being declared dead prematurely or having one's death hastened in order to provide organs for others can be expected to pose problems for a futures market. Encouraging gifts and donations Winston Churchill once said that democracy was the worst form of government ever created except for all others ever proposed or tried. The same can be said of express organ donation (by individuals while alive and/or families after relatives' deaths) in comparison with all other proposed methods. But can we make express donation more effective without transgressing ethical boundaries and limits? I have already offered some positive and negative recommendations, for instance, opposing mandated choice directed at individuals, and supporting the possible designation of a surrogate decision maker as well as routine or required referral (rather than merely required request). Reconceiving public education. We need to reconceive public (and professional) education, which has been too rationalistic, individualistic, formalistic, and legalistic. Some of the major deficiencies of most public education for organ donation flow from a misconception of the implications of respect for personal autonomy in organ donation. The moral and legal principle of respect for personal autonomy entails that if the individual, while alive, decides that he does not want to donate, and does not want his organs donated by others, that decision should be respected (just as the decision to donate should be respected). However, this foundational principle does not entail further that individual autonomy should be promoted by getting people to sign donor cards. Rather than taking the individualistic approach of trying to get more individuals to sign donor cards, public education should be more social and even communitarian, while still recognizing and stressing that respect for individual autonomy is fundamental and remains a trump card. This "liberal communitarian" approach would target individuals as members of smaller communities (often but not always families). It would educate individuals about the importance of indicating their wishes about donation to their family members as well as imagining themselves in the position of deciding for others who are deceased. Not only will effective educational programs have to address individuals as members of families, rather than merely as potential signers of donor cards, they will also have to address both individual and familial attitudes of fear and distrust, which appear to pose obstacles to express donation. Clarifying brain death. Certainly, education of the public (as well as health care professionals) about brain death is one crucial step. Education regarding brain death needs to underline that there are simply different ways to determine when the same state or condition of death has been reached. This is an area of education that is cognitive as well as attitudinal. A feasible policy for obtaining organs and tissues from cadavers also presupposes a clear, compelling, and workable boundary between life and death. The development of the criteria of brain death in the late 1960s was essential to the expansion of organ transplantation because of the need to obtain viable organs from heartbeating cadavers, whose cardiopulmonary function is maintained by machines. However, problems have emerged. First, uncertainties about brain death figures prominently in many of the stated reasons for individual and familial reluctance to donate organs. But these uncertainties are also evident in comments by many health care professionals. For instance, the attending physician in one famous case of organ donation noted that the patient was "brain dead and there isn't much chance he will recover." Second, we must not overlook the possibility that vigorous societal and professional efforts to alter the criteria of death may be partly responsible for the public's distrust. Warnings appeared in the late 1960s and early 1970s that updating the criteria of death in order to gain access to additional organs could lead to a backlash. Ramsey contended that there is a parallel between the necessity on the practical level of differentiating professional roles in declaring death and transplanting organs (so that the physician involved in the transplant should not determine whether the potential source of organs is dead) and the necessity on the intellectual level of differentiating reasons for updating the criteria for determining death.14 Criteria of death should be updated, he insisted, as part of the care of dying patients, not as part of the effort to increase the pool of potential organ donors. Changing the criteria of brain death, or even creating an exception to brain death, to accommodate, for example, the anencephalic newborn may further threaten a fragile system.19,25 Third, some institutions in the 1990s have attempted to enlarge the donor pool by again including non-heart beating cadavers declared dead by cardiopulmonary standards, often following patients' decisions to decline further lifesustaining treatment. One concern is that such efforts will create a conflict of interest among professionals who have to manage the dying process in order to maximize the likelihood of viable transplantable organs without violating rules against killing patients or directly hastening their deaths.26 Addressing complex psychosocial factors in organ donation and procurement. I have noted here, in a general way, the prominence of various complex psychosocial factors in individual and familial decisions, as well as in health care professionals' involvement in procurement. The discussion of brain death and of attitudes of trust and distrust also identifies some of these factors. Successful organ procurement must attend to the complex array of emotions, sentiments, symbols, and beliefs along with various rituals and practices associated with the dead human body. Only narrowly and excessively rationalistic approaches deny their importance and their role in organ procurement and donation. Organizing giving. We have too often thought of organ donation as a question of the relation between the broader society/state and the individual and/or his/her family. We have, in the process, too often neglected the role of religious and other intermediate communities. Yet these intermediate communities play a tremendously important role in the way we organize and live out our lives. In a nice phrase, William May referred to religious communities-his point is not limited to those communities-as possible sources of "organized giving." This phrase suggests both (a) what is given (organs) and (b) how the giving is structured: by the beliefs, symbols, rituals, and practices of particular communities. Some seem to think of religion as a barrier, when in fact it is more often a source of perspectives or frameworks within which organ donation can be viewed as obligatory or praiseworthy. We don't know the donor's framework in the Mickey Mantle case, but she viewed organ donation as obligatory, not merely praiseworthy. For her it was "the decent thing to do." Official religion rarely stands in the way of organ donation, and some religious objections, for example, in Orthodox Judaism, center largely on problems with brain death. For the most part, particularly in Catholicism, Protestantism, and Judaism, there is a convergence or overlap, establishing cadaveric organ donation as an ideal, praiseworthy action, if not morally mandatory. Interpreting and evaluating acts of donation. Consider the mother's comment regarding her act of donation in the Mickey Mantle case. She felt that she had an obligation. The reporters covering the case underlined the "sacrifice" of organ donors and praised their "heroic" actions. Others have called such cadaveric organ donations "extraordinary." Clearly there are two frameworks of moral discourse used for the mother's act of donation: morality of aspiration and morality of duty; ideal and right; good and right. These are not totally separate; the lines between them are not always clear, and we move back and forth between them. The mother, the actual donor, used the language of obligation, of duty, of right; the television reporter used the language of aspiration, supererogation, ideals, and good actions. These two frameworks of moral discourse produce different descriptions of and responses to the failure to donate. Within the morality of aspiration or supererogation, the failure to donate does not produce guilt. (It might produce shame if an agent has committed himself to living up to certain ideals.) By contrast, within the morality of duty or obligation, the failure to donate does produce guilt, and others may be indignant and complain. Both are part of our social-moral practices regarding organ donation, but we need to think through very carefully how we can and should use them in the society at large as well as in particular communities (for instance, religious communities). It is at least partially correct to say that one perspective is internal, not only to individual but also to family, as in the case of the donor mother—and perhaps to a small community—and the other is external, the perspective that observers and spectators must take, as in the case of the reporter, legislators, courts, and the society at large. Providing additional incentives to motivate donation. The following question has emerged in recent years: Could financial and other tangible incentives strengthen the system of express donation through "rewarded gifting" without crossing the line into sales? Thomas Peters has proposed a pilot program to test the effects of providing a one-time death benefit of $1,000 for recoverable donations.27 Critics contend that rewarded gifting differs very little from direct sales. However, a modified approach might be effective in providing financial incentives and yet preserving the meaning of the act of donation: As a regularized expression of gratitude for acts of donation of organs and tissues, the society could cover the decedent's funeral expenses up to a certain level. In this way, the community would recognize with gratitude the decedent's and the family's act of donation and would also pay respect to the donor/source of the organs and tissues by sharing in the disposition of the final remains, following the removal of donated parts.28 Any particular proposal for rewarded gifting requires careful scrutiny, in part because organ donation is a highly sensitive activity, marked by complex beliefs, symbols, attitudes, and sentiments, as well as by ethical and political pitfalls. Allocating and distributing organs fairly as well as effectively. The last point builds on the important moral connections between organ procurement and organ distribution. To increase the donation of cadaveric organs, we need to ensure that our allocation and distribution policies are fair, and assure the public that they are in fact fair. Who owns donated organs? I am somewhat embarrassed in retrospect that it took me several months on the federal Task Force on Organ Transplantation to grasp that much of the debate about selection criteria was in reality a debate about who owned—or who had dispositional authority over—donated organs. It was in part a debate about power and authority. At that time, in the mid-1980s, according to Jeffrey Prottas, organs donated for transplantation belonged to the surgeons who removed them.29 But then,.in its most important philosophical move, the federal task force held that donated organs belong to the community, as public resources, whose effective transfer is in the hands of transplant teams, which hold the organs as trustees and stewards on behalf of the community. However, as Prottas notes, the task force's new conception both fundamentally changed matters and yet left them the same. On the one hand, professional dominance remains. On the other hand, it is now more circumscribed and publicly accountable. With organ allocation and distribution now in the public domain, in part because transplant professionals sought governmental assistance, there are now more players, particularly public players, and the rules of the game are now different. "Alternative allocation systems are now defended in public debate," as Prottas notes, "and equity (fairness, justice) as well as efficiency (medical utility, etc.) must be considered and defined. Physicians dominate the debate, through knowledge as well as power, but they must justify their actions now as trustees of the public. The organs are no longer theirs." Public participation occurs in several ways, through discussions in the media, through the UNOS board and various committees, through local and regional boards, and so forth. The points I have just made apply to the allocation and distribution of organs to patients on waiting lists. The next stage of the discussion, which was raised by the Mickey Mantle case, is setting some public criteria for admission to waiting lists. This is now the big problem area, marked by too much mystery and perhaps even too much professional discretion. At least it's debatable, and the debate is now beginning in UNOS in an effort, for instance, to reduce clinicians' efforts to game the system by putting patients on lists early. Another problem emerges at the point of admission to waiting lists, and that is the relevance of ability to pay. In a 1993 Gallup poll, respondents were asked to agree or disagree with the following statement: "Given equal need, a poor person has as good a chance as a rich person of getting an organ transplant." Fifty-eight percent disagreed or strongly disagreed, and eight percent indicated that they didn't know. Even when we appeared to be headed toward health care The federal task force, on which I served as vice-chair, argued for eliminating ability to pay as a criterion, in part because of the distinctiveness of organ transplantation, which depends on public donations. According to the Task Force, it is unfair, even exploitative, to ask rich and poor alike to donate organs if only the rich have any effective chance of receiving organ transplants in cases of medical need. Ethically and politically, it is going to be difficult to request organs from the public, when so many could never receive an extrarenal (in contrast to a renal) transplant. Over 37 million citizens are without health insurance at any one time, an additional 10 to 12 million lack insurance some time during the year, and many are underinsured (or with benefits packages that exclude some expensive transplants). And yet they are aware of the Mantles, Caseys, Hagmans' Crosbys, and other wealthy celebrities who are able to get on waiting lists and who sometimes seem to receive a transplant very, very quickly. Conclusion Debates can be expected to continue about effective ways to obtain more cadaveric organs and tissues for transplantation, particularly in view of the long waiting lists for transplants and the limited increases in the acts of donation. Religious beliefs, symbols, and practices, along with various other psychosocial forces, are important for determining the ethical acceptability and ethical preferability, as well as the feasibility, of different laws, policies, and practices to obtain organs and tissues for transplantation. Some of the policy reforms in the U.S. in the 1980s may have been ineffective and perhaps even counterproductive because of inadequate sensitivity to such psychosocial factors. It is crucial that policymakers consider the whole range of relevant factors in order to ensure the effectiveness and minimize the negative consequences of organ procurement policies. The system of express donation remains our best ethical hope, but even with the changes I have proposed it may not produce as many organs as it could (certainly, we need alternatives to human organs). Not every problem has a solution, much less an ethically acceptable solution. Addendum This edited version of the 1995 Ethics and Philosophy Lecture, presented at the College's Clinical Congress in New Orleans, LA, draws on some of the author's prior writings. These include: (1) "Organ and tissue procurement: Ethical and legal issues regarding cadavers." In: Reich WT (ed): Encyclopedia of Bioethics (2nd ed.). New York, NY: MacMillan/Free Press, 1995. (2) "Obtaining the gift of life: Ethical issues in the procurement of organs for transplantation." In: Hodges LW (ed): Social Responsibility: Business, Journalism, Law, Medicine. Lexington, VA: Washington and Lee University, 1995. (3) Andre Hellegers Memorial Lecture, Kennedy Institute of Ethics at Georgetown University, September 8, 1995. References 1. Childress JF: Ethical criteria for procuring and distributing organs for transplantation. In: Blumstein J, Sloan F (eds): Organ Transplantation Policy: Issues and Prospects. Durham, NC: Duke University Press, 1989, pp. 87-113. 2. Youngner SJ: Psychological impediments to procurement. Trans Proc, 24:2159-2161, 1992. 3. National Conference of Commissioners on Uniform State Laws: Uniform Anatomical Gift Act. Chicago, IL: National Conference of Commissioners on Uniform State Laws, 1968, 1987. 4. Callender CO: Organ/tissue donation in African Americans: A national strategem, and Chapa J: Hispanics and organ donation: Prospects, obstacles and recommendations. In: U.S. Department of Health and Human Services, Public Health Service, Background Papers: The Surgeon General's Workshop on Increasing Organ Donation. Washington, DC: U.S. Government Printing Office, 1992, pp. 145-162; 163-180. 5. Veatch RM: Death, Dying, and the Biological Revolution (2nd ed). New Haven, CT: Yale University Press, 1989. 6. Siminoff L, et al: Public policy governing organ and tissue procurement in the United States. Ann Int Med, 123:10-17, 1995. 7. Areen J: A scarcity of organs. J Legal Ed, 38:555-565, 1988. 8. Caplan A: Ethical and policy issues in the procurement of cadaver organs for transplantation. N Engl J Med, 314:981-983, 1984. 9. Virnig BA, Caplan AL: Required request: What difference has it made? Trans Proc, 24:2155-2158, 1992. 10. Ibid, p. 2156. 11. Prottas JM, Batten HL: The willingness to give: The public and the supply of transplantable organs. J Hlth Politics Policy Law, 16:121-134,1991. 12. Nelson JL: The Rights and Responsibilities of Potential Organ Donors: A Communitarian Approach. Washington, DC: The Communitarian Network, 1992. 13. May WF: Attitudes toward the newly dead. Hastings Ctr Stud, 1:3-13; 1973. 14. Ramsey P: The Patient as Person. New Haven, CT: Yale University Press, 1970. 15. Prottas J: Organ procurement in Europe and the United States. Milbank Mem Fund Quarterly/Hlth Soc, 63:94-126; 1985. 16. Land W, Cohen B: Postmortem and living organ donation in Europe: Transplant laws and activities. Trans Proc, 24:2165-2167, 1992. 17. Silver T: The case for a post-mortem organ draft and a proposed model organ act. Boston Univ Law Rev, 68:681-728, 1988. 18. Jonsen AR: Transplantation of fetal tissue: An ethicist's viewpoint. Clin Res, 36:215-219, 1988. 19. U.S. Congress, House of Representatives, Committee on Science and Technology, Subcommittee on Investigations and Oversight: Hearings on Organ Transplants, 98th Congress, 1st Sess., April 13, 14, 27, 1983. Washington, DC: U.S. Government Printing Office, p. 373. 20. United Network for Organ Sharing, the National Organ Procurement and Transplantation Network: Annual Report of the U.S. Scientific Registry for Transplant Recipients and the Organ Procurement and Transplantation Network-Transplant Data: 1988-1993. Richmond, VA: UNOS, and Bethesda, MD: The Division of Organ Transplantation, Bureau of Health Resources Development, Health Resources and Services Administration, U.S. Department of Health and Human Services, 1994. 21. Cohen LR: Increasing the supply of transplant organs: The virtues of a futures market. George Washington Univ Law Rev, 58:1-51, 1989. 22. Murray T: On the human body as property: The meaning of embodiment, markets, and the meaning of strangers. J Law Reform, 20:Summer, 1987. 23. May WF: Religious justifications for donating body parts. Hastings Ctr Rep, 15: February, 1985. 24. Hansmann H: The economics and ethics of markets for human organs. In: Blumstein J, Sloan F (eds): Organ Transplantation Policy: Issues and Prospects. Durham, NC: Duke University Press, 1989, pp. 57-85. 25. Capron A: Anencephalic donors: Separate the dead from the dying. Hastings Ctr Rep, 17:5-9; 1987. 26. Arnold RM, Younger RM, Youngner SJ (eds): Special issue: Ethical, psychosocial, and public policy implications of procuring organs from non-heartbeating cadavers. Kennedy Inst Ethics J, 3:103278; 1993. 27. Peters TG: Life or death: The issue of payment in cadaveric organ donation. JAMA, 265:1302-1304; 1991. 28. Childress JF: The body as property: Some philosophical reflections. Trans Proc: 24:2143-2148, 1992. 29. Prottas J: The Most Useful Gift: Altruism and the Public Policy of Organ Transplants. San Francisco, CA: Jossey-Bass Publishers, 1994. 30. Welch HG, Larson EB: Dealing with limited resources: The Oregon decision to curtail funding for organ transplantation. N Engl J Med, 319:171173; 1988. Dr. Childress is Kyle Professor of Religious Studies, professor of medical education, and co-director, Virginia Health Policy Center, University of Virginia, Charlottesville, VA. Bulletin of the American College of Surgeons
Ethics and Philosophy Lectures
by the American College of Surgeons, Chicago, IL 60611-3211 |