3
Perspectives and Principles

In this chapter, the committee summarizes its charge and sets forth several perspectives and principles that will guide its analyses and assessments of various proposals for increasing the rate of deceased organ donation.

THE COMMITTEE’S CHARGE

The committee was directed to analyze and evaluate proposals to increase the rates of deceased organ donation in light of the “ethical, religious, and moral standards commonly found in the United States.” The term “standards” includes what is often referred to as ethical or moral principles, norms, and values. Standards may be substantive (i.e., indicating what should or should not be done) or procedural (e.g., indicating how a decision should be made and by whom it should be made or how a policy should be carried out). Even though the term “standards” is often used, other terms such as “principles,” “norms,” and “values” are also relevant. (The terms “ethical” and “moral” are used interchangeably in this report.)

To identify standards “commonly found in the United States,” the committee has examined current practices, policies, laws, opinion surveys, and cultural and religious traditions as interpreted by the spokespeople for relevant organizations and other experts (e.g., philosophers, theologians, anthropologists, and sociologists). Notwithstanding the diversity of U.S. society and the complexities of the problem that is being addressed, the committee finds a surprising degree of consensus around several fundamen-



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Organ Donation: Opportunities for Action 3 Perspectives and Principles In this chapter, the committee summarizes its charge and sets forth several perspectives and principles that will guide its analyses and assessments of various proposals for increasing the rate of deceased organ donation. THE COMMITTEE’S CHARGE The committee was directed to analyze and evaluate proposals to increase the rates of deceased organ donation in light of the “ethical, religious, and moral standards commonly found in the United States.” The term “standards” includes what is often referred to as ethical or moral principles, norms, and values. Standards may be substantive (i.e., indicating what should or should not be done) or procedural (e.g., indicating how a decision should be made and by whom it should be made or how a policy should be carried out). Even though the term “standards” is often used, other terms such as “principles,” “norms,” and “values” are also relevant. (The terms “ethical” and “moral” are used interchangeably in this report.) To identify standards “commonly found in the United States,” the committee has examined current practices, policies, laws, opinion surveys, and cultural and religious traditions as interpreted by the spokespeople for relevant organizations and other experts (e.g., philosophers, theologians, anthropologists, and sociologists). Notwithstanding the diversity of U.S. society and the complexities of the problem that is being addressed, the committee finds a surprising degree of consensus around several fundamen-

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Organ Donation: Opportunities for Action tal propositions. One can find strong disagreements, to be sure, but most of these disputes center on what a particular standard or principle may entail rather than on the existence or validity of the standard itself. Some of the principles identified below have been articulated or codified in an explicit way by legislators; public bodies, such as commissions; ethicists; theologians; and others. In other cases, however, the committee has identified a latent understanding that provides a commonly accepted foundation for existing policy and practice or a constraint on the range of acceptable solutions for improving the present system. In this sense, the task of identifying “ethical, religious, and moral standards commonly found in the United States” is inescapably interpretive. However, in the committee’s judgment, the principles identified below represent a genuine consensus and provide a solid framework for evaluating the proposals that have been laid before the committee. The committee uses these principles to distinguish, as its charge requires, “ethically acceptable” proposals from “ethically controversial” ones—and, indeed, from ethically unacceptable ones (i.e., those that would represent a clear and radical departure from the “ethical, religious, and moral standards commonly found in the United States”). The committee was also charged with further evaluating “ethically controversial” proposals by considering their possible impact on existing donation efforts (for instance, what impact would nonmonetary or monetary incentives have on altruistic donations?), on public perceptions of organ donation, on “disadvantaged or disproportionately affected groups” (including both ethnic minorities and socioeconomically disadvantaged groups), and on living donation. The committee was directed to consider and recommend any “particular alterations” that could reduce the “ethical problems” in controversial proposals. Finally, the committee is expected to evaluate different proposals in terms of their cost-effectiveness, feasibility, and practicality. PERSPECTIVES AND PRINCIPLES This section provides a brief sketch of the guiding perspectives and principles that the committee used in discharging its task. The report’s subsequent discussion of different proposals to increase the number of transplantable organs will further amplify the substantive and procedural principles summarized below (Box 3-1). Overall, the committee believes that any policies crafted to increase the rate of organ donation must be compatible with these perspectives and principles. What these principles imply and how much weight and strength they have will be clarified in the evaluation of specific proposals. For instance, it may be unclear at the outset, before the detailed analysis and assessment, what these propositions imply for a specific proposal about the use of incentives to motivate families

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Organ Donation: Opportunities for Action BOX 3-1 Guiding Perspectives and Principles Common Stake in a Trustworthy System: Everyone in the national community has a common stake in the creation and maintenance of an effective and trustworthy system for providing timely access to transplantable organs and, if organs are scarce, in increasing the number of organs recovered and distributing them fairly. Acceptable Appeals for Organ Donation: Policies and practices designed to increase organ donation may properly appeal to a variety of motivations for donation, including altruism, community spirit, and reciprocity. Respect for Persons: Policies and practices designed to increase the rates of organ donation and the recovery of organs from deceased individuals must be compatible with four limiting conditions deeply rooted in the cultural, religious, and legal traditions of the United States: (1) respect for the moral worth and dignity of each human being; (2) respect for each individual’s right to govern the disposition of his or her body after death, including the voluntary choice of whether or not to donate organs; (3) respect for the remains of human beings, as represented in particular cultural and religious practices; and (4) respect for the wishes and feelings of the families of deceased individuals. Fairness: Policies and practices designed to increase the supply of transplantable organs need to be fair in their distribution of both benefits and burdens, with particular attention to their impact on disadvantaged groups. to donate the organs of their loved ones. In the event that these principles conflict in the evaluation of a specific proposal, a further judgment regarding which of the conflicting principles should have priority will be required. Common Stake in a Trustworthy System Everyone in the national community has a common stake in the creation and maintenance of an effective and trustworthy system for providing timely access to transplantable organs and, if organs are scarce, in increasing the number of organs recovered and distributing them fairly. The committee’s charge focuses on increasing the number of individuals and families who donate organs. It must be recognized from the outset, however, that everyone has a stake in a robust system for recovering and transplanting organs to those in need. Just as everyone has a personal stake or interest in the availability of enough doctors, nurses, and other healthcare providers, as well as drugs and medical devices, to cure or ameliorate

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Organ Donation: Opportunities for Action disease, so, too, does everyone have a common interest in ensuring the availability of enough organs to save, extend, and improve their own lives and the lives of their loved ones. The committee estimates that among the U.S. population as a whole, each person has a 1-in-7,500 chance of needing a transplantable organ in a given year and a 1-in-100 chance of needing one in a lifetime (Appendix D). If it is assumed that any given individual has meaningful emotional attachments to 20 other people, the annual probability that a person or someone whom he or she cares about will need a transplantable organ in a given year is 1 in 358 and the lifetime probability is 1 in 5 (Appendix D). The Link Between Organ Recovery and Distribution Although this statement of common interest would probably be widely affirmed, it is not easy to reach a consensus about what both effectiveness and fairness require in the context of a healthcare system marked by gross inequalities. This report largely focuses on proposals that will increase the number of donated and recovered organs, but the committee also emphasizes that those proposals will not be effective or fair—or perceived to be such—without attention to fair distribution. There is thus a close connection between efforts to increase the rates of organ donation, on the one hand, and the allocation and distribution of organs, on the other (Childress, 1987). Obviously, major increases in the rate of organ donation and in the number of available organs would reduce some of the ethical challenges and dilemmas of allocation and distribution and might bolster public confidence in the system. Less obviously, but also significantly, perceptions of unfairness in the system of allocation and distribution may have a negative impact on the rates of organ donation. In particular, people may be less willing to sign donor cards or to donate deceased family members’ organs if they believe, for instance, that celebrities have an unfair advantage in obtaining organ transplants or believe that they themselves would have little chance to obtain needed transplants because of bias or a lack of health insurance. Reciprocity Some ethicists argue that reciprocity provides the most compelling moral basis for an effective and fair system of organ donation (Ravelingien and Krom, 2006; Siegal and Bonnie, 2006). In its strong form, reciprocity implies that everyone who expects to be eligible to be a recipient if the need were to arise has a prima facie moral obligation to register to be a donor. Whether eligibility for organs, or waiting list priority, should turn on donor

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Organ Donation: Opportunities for Action registration is a highly controversial question that is addressed in Chapter 8. For the present purposes, however, the pertinent point is that everyone who is asked to be a donor should at least be eligible to be a recipient, medical circumstances permitting. Twenty years ago, the federal Task Force on Organ Transplantation (1986) concluded that it is unfair and even exploitative for society to ask everyone, rich and poor alike, to donate organs if poor people in need would not have an equal opportunity to receive a transplant. All potential donors and their families should have an equal opportunity to be recipients. Unfortunately, the Task Force’s recommendation has not been heeded. Lack of insurance coverage and inability to pay for a transplantation out of pocket effectively preclude many uninsured potential recipients from receiving extrarenal transplants. Although patients in the United States with end-stage heart failure must have health insurance or other financing to receive a heart transplant, a recent study found that 23 percent of organ donors are uninsured (King et al., 2005). Only universal access to health insurance coverage for transplantation (Task Force on Organ Transplantation, 1986) can ensure a fully reciprocal system of procuring and distributing organs. The committee is tempted to say that resolving this long-standing flaw in the current system is a necessary condition for an ethically satisfactory strategy for increasing the rate of organ donation. It recognizes, however, that the underlying inequity is likely to be resolved only as part of a comprehensive reconfiguration of healthcare financing in the United States, a process of reform that, once begun, will require many years. In the meantime, it must be understood that the lack of reciprocity in the procurement and distribution of organs provides a serious and continuing impediment to increasing the rates of organ donation among poor and uninsured Americans. Implementation of any proposals to increase the rate of donation must take this deficiency into account. Trustworthiness The system for obtaining and distributing organs needs to be worthy of trust. In a system perceived as trustworthy, citizens may be more likely to donate their (or their family members’) organs. If citizens believe that the system of organ recovery and allocation is ineffective or unfair or that it fails to respect other important ethical standards, they would have little reason to support the system by donating organs. After all, when it is viewed as a component of the larger healthcare system, organ transplantation is uniquely reliant on public participation: the medical procedure (transplantation) simply cannot occur without donations of transplantable organs. Hence, public trust is utterly indispensable. Focus groups and opinion surveys regularly identify distrust or mistrust as common reasons for non-

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Organ Donation: Opportunities for Action donation, particularly among populations who view themselves as socially marginal (Nolan and Spanos, 1989; Peters et al., 1996; Siminoff and Saunders Sturm, 2000; Minniefield et al., 2001; Minniefield and Muti, 2002). In addressing various proposals to increase the rates of organ donation throughout this report (as well as in this chapter), the committee identifies several policies and practices that are important conditions for the system’s trustworthiness and, hence, a reasonable basis for the public’s trust. One of the most profound threats to the moral integrity and practical viability of the system of recovering transplantable organs and to its public support is the possibility that life-sustaining treatment might be forgone or terminated prematurely for the purpose of taking patients’ organs. Media accounts of such episodes in other countries—indeed, reports that people have been killed—have occasionally appeared. From its inception, the U.S. organ recovery system has been designed to provide strong safeguards against such an occurrence. One such safeguard is faithful adherence to the dead donor rule (i.e., the rule that organs may not be recovered from a dying person until the person has died) by requiring a declaration of death before initiating the process of organ recovery and by separating organizational responsibility for caring for the dying patient from the responsibility for organ recovery. Confusion about the implications of the dead donor rule has several sources. It is difficult for many people to grasp that there is a single definition of death but that there are two ways to determine that death has occurred, that is, by the use of neurologic criteria and by the use of circulatory criteria (Chapter 5). For example, DuBois and Schmidt (2003) conducted a telephone survey of 1,000 U.S. heads of household on attitudes toward the definition of death and organ donation. Eighty-four percent agreed that a person could be dead while breathing was mechanically maintained, but only 60 percent agreed that a person could be dead with a beating heart (as is the case with most donors declared to be dead according to neurologic criteria). Answers to the question “What do you think is meant by the term ‘brain death’?” tended to be consistent with the medical characteristics of “whole-brain” criteria (e.g., few or no signals are sent to and from the brain or the person cannot move or communicate), but only 8 percent actually stated that “the person is dead.” Forty-seven percent agreed with the false statement that “a person who is declared ‘brain dead’ by a physician is still alive according to the law.” In a telephone survey of 1,351 Ohio residents, Siminoff and colleagues (2004) found that even fewer respondents than the number in DuBois and Schmidt’s (2003) study knew that someone who is “brain dead” is legally dead (34 percent), and 28 percent believed that “brain-dead” patients can

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Organ Donation: Opportunities for Action hear. This survey distinguished between respondents who viewed patients declared dead using neurologic criteria as “dead” (40 percent) versus “as good as dead” (43 percent). A remaining 16 percent believed that these patients are alive. Many physicians and other healthcare professionals appear to embrace concepts of death that are incompatible with the use of neurologic criteria to determine death (Ettner et al., 1988; Youngner et al., 1989), but the numbers may be falling (DuBois, 1999). Confusion or uncertainty about whether patients declared dead using neurologic criteria are really dead can affect the willingness of a family to donate the organs of a loved one (Pearson et al., 1995; Siminoff et al., 2003; DuBois and Anderson, 2006). The protocols now being used to recover organs from people declared dead by the use of circulatory criteria (Chapter 5) have raised new risks of public misunderstanding or mistrust. In this context, public concern is associated less with the meaning of being dead than with the danger that life-sustaining treatment will be prematurely withdrawn. According to DuBois and Anderson (2006), the most commonly cited reasons for doubts about procuring organs from patients meeting the circulatory criteria of death were that, because of the withdrawal of life support, “a chance for recovery might be lost” (21 percent) and “it sounds like murder or suicide” (20 percent). The fear that organs will be taken from patients who might have benefited from additional treatment can lead to decreased donation rates (DuBois and Schmidt, 2003). Some experts have suggested that public and professional confusion might be alleviated by decoupling organ donation from the definition of death (Youngner and Arnold, 1993; Truog, 1997) and allowing organs to be recovered once the patient or a legally authorized family member has decided to withdraw life-prolonging treatment, even if the patient has not yet died. The rationale for decoupling transplantation from the definition of death is straightforward: why go through the formality of waiting for the patient to meet the medical criteria of death and taking the risk that the organs will be wasted when the decisions to allow the patient to die and to permit organ recovery have already been made? Although the committee understands the moral logic of such proposals, it does not favor this approach. Abandoning the dead donor rule would constitute such a radical departure from the existing legal and ethical framework of organ transplantation that it would exacerbate public cynicism and distrust, no matter how carefully the clinical practices were monitored (DuBois, 1999; DuBois and Schmidt, 2003). The dead donor rule is one clear line that should not be crossed in efforts to increase the supply of organs. Educating the public about its meaning and significance—and that there is one definition of death accompanied by two ways of determining death—is a major ongoing task.

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Organ Donation: Opportunities for Action Transparency The complex arrangements needed to stimulate and maintain a growing supply of transplantable organs amount to a delicate social system. Any perturbation in the system (arising, for example, from removing organs over the family’s objection, a premature declaration of death, or an apparently discriminatory allocation practice) can have a marked and immediate impact on the willingness to donate and therefore on the supply of organs. It follows that a successful system of organ recovery, whether from deceased donors or live donors, requires continuous and unstinting efforts to promote and nurture public understanding, which is a necessary condition for trustworthiness and, therefore, for public trust. Acceptable Appeals for Organ Donation Policies and practices designed to increase organ donation may properly appeal to a variety of motivations for donation, including altruism, community spirit, and reciprocity. People donate organs for a variety of reasons. Individual and familial decisions about organ donation are often grounded in altruism, a spirit of community or solidarity, reciprocity (the recognition that everyone is a potential recipient as well as a potential donor), a desire to gain some meaning out of a tragedy (e.g., a parental decision to donate a deceased child’s organs), or some combination of these and other motivations. Cultural and religious traditions differ in the predominance of one of these values or another. The committee believes that these motivations are all morally acceptable and compatible and that a system of organ recovery and distribution may properly appeal to all of them.1 Confusion has marred much of the discussion of altruism in relation to donation of organs from deceased donors (deceased organ donation), perhaps because of an assumption that a donation or gift system (under state versions of the Uniform Anatomical Gift Act) is necessarily grounded in altruism. However, the ordinary experience of gift-giving among families or friends should be sufficient to dispel that notion—the motives of gift givers are often quite complex and may reflect a combination of generosity, perceived obligation, and a desire to be regarded with favor. Nevertheless, altruism—a motivation for action that is concerned only about others’ welfare—is sometimes viewed as the predominant and only acceptable motivation for donation in the current system. It is important to dispel this confusion between “donation” and “altruism” because it inhibits successful resolution of ethical disputes regarding 1 The only motivation that is not currently acceptable is the prospect of financial benefit. Principles bearing on financial motivation are discussed in Chapter 8.

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Organ Donation: Opportunities for Action the permissibility of various approaches for increasing the donation rate. For example, one commentator has stated that “[t]he voluntary decision to donate must be based on altruistic motives; otherwise, it is not permitted” (Prottas, 1994, p. 50). This line of thinking is based on the assumption that altruism and financial gain are the only possible motivations for authorizing recovery of an organ and that, because our system has ruled out financial motivation, a gift of an organ must be based on altruism. This proposition, if it were true, would preclude the use of any sort of incentive, or appeal to self-interest, such as giving people who have recorded their intention to donate preferred status as recipients. It also implies that organ procurement organizations should be ascertaining families’ motivations for donation, a task that they do not currently undertake as long as financial compensation does not appear to be involved. Another analyst insists that “[o]rgan procurement activities in the United States are based on altruism. Out of their compassion for others, people agree to donate the organs of a deceased relative” (Evans, 1993, p. 3113). In fact, however, it is not really known, and it may not be possible to determine, what actually motivates people to donate organs. It seems likely, though, that people may have all sorts of reasons for donating organs. Altruism, including feelings of compassion for people in need, is clearly an important motivation for many donors. Other motives, however, as noted, may include a strong sense of communal solidarity; a sense of obligation, perhaps based on reciprocity (e.g., the Golden Rule); a desire to find redemptive meaning in a tragic set of circumstances; or a desire for praise, honor, and the like. Policies and practices aimed at increasing the rates of donation may properly appeal to all of these motivations. By overemphasizing altruism, however, the system of organ recovery has often neglected other powerful motivating reasons that could connect and align the individual’s and family’s interests more closely with the interests of potential recipients of donated organs. Instead, it has tended to view these interests as totally separate. As a result, organ donation has been praised as a highly disinterested, sacrificial, and heroic act that may appear to be out of the ordinary person’s reach because it is so demanding. The act of donation is voluntary, in the sense that others cannot claim it as a right. This does not mean, however, that altruism is the only possible or acceptable motivation or that donation policies should appeal only to altruism. Respect for Persons Policies and practices designed to increase the rates of organ donation and the recovery of organs from deceased individuals must be compatible with four limiting conditions deeply rooted in the cultural, religious, and legal traditions of the United States: (1) respect for the moral worth and

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Organ Donation: Opportunities for Action dignity of each human being; (2) respect for each individual’s right to govern the disposition of his or her body after death, including the voluntary choice of whether or not to donate organs; (3) respect for the remains of human beings, as represented in particular cultural and religious practices; and (4) respect for the wishes and feelings of the families of deceased individuals. Respect for Human Dignity The policies and practices related to organ donation and recovery must respect the dignity of each human being whose body is being used as a source of organs. The major concern here is that the deceased person not be regarded simply as a “thing” being used instrumentally for the benefit of others. Instead, the person’s body represents a unique person who, while alive, chose to donate his or her organs so that others might live or in whose name and memory the family has chosen to make such a donation. This overarching concept of respecting human dignity encompasses several more specific principles: it entails respect for the wishes of living individuals, including their interest in having their wishes respected after they have died, and respect for their bodily remains. Each of these principles is elaborated on further below. It is likely that the often expressed objections to the commodification of human body parts, characterized by the objectification of the organs and their pricing for sale, are rooted in concerns that the dignity of individual people would be violated by the routine commercial disposition of organs from dead bodies. Although they are difficult to articulate, concerns about the degradation of human dignity may explain the revulsion and repugnance that some experience at the prospect of the buying and selling of transplantable organs (Kass, 1992). The proponents of a market for transplantable solid organs emphasize that other human biological products, particularly sperm and eggs, are being directly sold and that there is an extensive industry involved in processing, marketing, and selling human tissue and bone products. In response, those who are troubled by the commodification of dead bodies (or of the solid organs of living persons) insist that the sale of these organs would cross an important moral boundary and could erode the moral fabric of the community. The committee addresses the issues surrounding payment for organs and other types of financial incentives for donation in Chapter 8. For the moment, it is sufficient to note that whatever policies are adopted must be designed in a way that avoids the degradation of human dignity.

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Organ Donation: Opportunities for Action Respect for Decedents’ Wishes Although practices regarding the disposition of bodies after death differ from society to society, the well-established tradition in the United States and most other Western societies is to respect the living individual’s wishes regarding the disposition of his or her remains. This tradition is evident in the practice of specifying, often in one’s will or last testament, the conditions and mode of burial, cremation, or other method of disposing of one’s remains. Although a family’s failure to honor the decedent’s wishes may not give rise to legal liability, families virtually always feel a moral obligation to do so. Such exercises of “precedent autonomy” have a strong moral force, even after death. The decedent’s authority to govern the disposition of his or her body is not absolute, however, because the state has the authority to take control over the body to prevent the spread of disease or to conduct an autopsy, notwithstanding any directions of the deceased to the contrary. In light of these well-established principles and traditions, it is not surprising that a living person may also direct or forbid the postmortem donation of his or her organs for transplantation. As will be further explained in Chapter 6, state legislatures have codified the legal prerogative of a living person to make binding decisions regarding organ donation. This deep respect for autonomy precludes the taking of organs when the living person forbade it and authorizes the taking of organs when the living person consented to donation, even if the family objects. Healthcare organizations or others in actual possession of the body are directed to follow the decedent’s wishes and are punishable by legal sanctions in many states if they do not do so. The prospect of legal sanctions brings precedent autonomy in organ donation into alignment with the law and practice governing the disposition of property after death in accordance with the deceased person’s will. Legal recognition of the living person’s prerogatives in making binding decisions regarding organ donation after death is also well aligned with the widespread recognition of the binding force of advance directives in health care, under which a legally competent adult may prescribe end-of-life healthcare decisions in the event that he or she has permanently lost decisional capacity. As discussed in Chapter 4, the committee regards deceased organ donation to be an integral part of end-of-life care. In this respect, the moral reach of the living person’s prerogative to govern the disposition of his or her body after death extends not only to the possibility of making a donation decision but also to the possibility of designating a surrogate decision maker, even though this particular implication has been overlooked so far by most legislatures.

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Organ Donation: Opportunities for Action Respect for Human Remains Another condition that must be satisfied by policies or practices designed to increase organ donation is respect for human remains. People in most cultures have deep feelings about the proper treatment of a dead body, and these feelings are often linked to beliefs about the continued spiritual existence of the person who has just died. Failure to show proper respect for the body can be offensive and disturbing to anyone who might observe it and can be profoundly painful to the deceased person’s family whether they observe it or not. Concerns about the desecration of a human corpse are reflected in criminal prohibitions against such behavior and in the possible liability of the perpetrators for inflicting emotional distress on living family members (Dobbs et al., 1984). Organ recovery practices must be scrupulously sensitive to these concerns, because the failure to do so could undermine public support. Respect for Families The families of deceased individuals play an important role in the system of organ recovery in the United States, and their wishes and feelings deserve respect. They have a legal obligation to bury or otherwise dispose of the body, and they have a legal right to possess the body for this purpose (see, e.g., Newman v. Sathyavaglswaran2). The right to take possession of the body and determine its disposition has been characterized as a “quasi-property interest.” However, as already noted, the interests of families in governing the disposition of a loved one’s remains and in making a decision about organ donation are subordinate to the “surviving interest” of a deceased donor who has expressed a desire regarding donation. Nonetheless, because many potential donors fail to express their wishes regarding donation, families are often the default decision makers about donation. Because families are often the best source of information regarding the values and wishes of a dying or a deceased person, their expressions of the deceased person’s preferences should be respected when those preferences are otherwise unknown. In addition, the deceased person may have designated a family member to make the decision. As mentioned above, families also often have strong emotional attachments to the body of the deceased, sometimes grounded in spiritual or religious beliefs. These deep attachments ought to be respected whenever it is possible to do so without sacrificing weightier considerations. For these reasons, policies and practices designed 2 287 F.3d 786 (9th Cir, 2002).

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Organ Donation: Opportunities for Action to increase the rates of organ donation must be careful to involve the family in appropriate ways, even when the deceased person has directed donation. Fairness Policies and practices designed to increase the supply of transplantable organs need to be fair in their distribution of both benefits and burdens, with particular attention to their impacts on disadvantaged groups. The principle of fairness—a subset of justice—has already been invoked in this chapter in the formulation of “a common stake in a trustworthy system.” One aspect of that common stake focuses on the fair distribution of organs when the supply is not sufficient to meet everyone’s needs. In addition, a version appeared in the discussion of reciprocity, which under ideal circumstances would involve a willingness to donate along with a willingness to receive organs. Furthermore, as already noted, the committee was charged to consider the effects of various proposals to increase the supply of transplantable organs on “disadvantaged or disproportionately affected groups” (including both ethnic minorities and socioeconomically disadvantaged groups). All these considerations presuppose some conception of fairness, a norm that is widespread, even if it is subject to widely different interpretations, in U.S. society. At a minimum, fairness requires that similarly situated people be treated according to the same standards. Judgments of fairness and unfairness include, as the examples presented above suggest, attention to the distribution of burdens, inconveniences, costs, and harms, as well as to the distribution of benefits, such as organs for transplantation. In evaluating different proposals to increase the numbers of available organs, the committee attends to debates about their fairness. For instance, some critics of opt-out policies contend that they would unfairly burden conscientious objectors or socially disadvantaged individuals by requiring them to take the initiative not to become organ donors. By contrast, some proponents of these policies argue that it is only fair for the majority to effectuate its will through such a policy. The committee examines the merits of these arguments, as well as possible ways to tweak such policies to eliminate unfair burdens, in Chapter 7. Similar debates about fairness arise in discussions of proposals to institute a free or regulated market or to use financial incentives within a donation framework (Chapter 8). They also arise in consideration of nonfinancial incentives in the form of preferential access to organ transplants, if they become needed. In controversies about both financial and nonfinancial incentives, a central, even if sometimes submerged, question is who will benefit and who will be burdened by such policies and whether the rules and resultant distributional patterns are fair.

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Organ Donation: Opportunities for Action As these examples suggest, there is often no clear and easy way to resolve these debates about fairness. Nevertheless, any examination of the different proposals requires attention to the way that they provide benefits and impose burdens, particularly who gains and who loses in the process. CRITERIA FOR EVALUATING PROPOSED CHANGES The difference between a strictly technical and an ethical examination of ways to increase rates of organ donation is that an ethical approach must set the problem within the larger context of individual and social well-being. The committee considered the impact of various proposed policies not only on donation rates but also on many other policy-relevant variables, such as public and professional attitudes about the meaning of the body, the scope of individual freedom, and a sense of community. One act of organ donation by a deceased donor can significantly increase the length and improve the quality of life of several individuals. In addition, within both secular and religious frameworks, saving a life is deemed one of the greatest positive duties in the moral life. Nevertheless, it is important to ask what constraints should be recognized in the pursuit of the goal of increasing rates of organ donation. Some proposals under consideration may be unacceptable—even though they might increase the supply of recovered organs—because they are fundamentally incompatible with one or more of the necessary conditions specified above, such as trustworthiness (e.g., abandoning the dead donor rule) and respect for donor autonomy (e.g., the routine removal of organs from deceased individuals without consent). These proposals can be ruled out right away. For other proposals, the first question to be asked is whether they would probably increase the number of transplantable organs over the long run as well as the short run. Estimating the effects of a new policy or program on the organ supply is a difficult challenge, because the outcome depends heavily on the ways in which the proposed change would affect the attitudes and perceptions of potential donors and their families. A mistaken prediction could be disastrous because it could actually reduce the rate of donation rather than increase it as anticipated. Furthermore, certain alterations in policy and undesirable changes in attitudes and perceptions may be very difficult, if not impossible, to reverse. Accordingly, a cautious perspective is imperative both in predicting the effects of proposed changes and in implementing any new policies and programs. Even though the current system is far from perfect, policy makers need to be sure that changes will not make matters worse. Finally, all proposals need to be cost-effective, as well as feasible and practical.

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Organ Donation: Opportunities for Action In any case, assuming that a particular change can be reasonably expected to increase the rate of donation, it must be asked whether the proposal is problematic or controversial in light of the other important principles and values at stake, such as fairness, respect for the autonomy of individuals in governing the disposition of their bodies, and respect for legitimate interests of families. If conflicts arise, it must then be asked whether the proposed policies and practices can be reframed to minimize or eliminate the conflicts and associated concerns. This is the approach that the committee has taken in this report. Several questions may guide the justification of policy decisions when values and principles conflict (Childress et al., 2002): Will the proposed policy be effective in achieving the intended good? If it is effective in achieving the intended good, is the good significant enough to justify infringing upon other values? Is it necessary to infringe upon other values? If it is necessary to infringe upon other values, has the infringement been minimized as far as possible? Clearly, none of these questions can be answered with a simple yes or no. Each requires the exercise of judgment. Some require controversial value judgments; others require predictions, even when the data may be scant. In the following chapters, the committee wrestles with these questions as they pertain to a series of specific proposals to increase the rates of organ donation. Some proposed changes pose irreconcilable conflicts between weighty contending values. These are the “ethically controversial” proposals to which the charge to the committee refers. In these cases, the committee has struggled to evaluate and balance the competing concerns. Not everyone will agree with the committee’s collective judgment, but the fact that the committee was able to reach a consensus is a promising indication of the prospects for achieving a wider public consensus on the plan outlined in the report. REFERENCES Childress JF. 1987. Some moral connections between organ procurement and organ distribution. Journal of Contemporary Health Law and Policy 3:85–110. Childress JF, Faden RR, Gaare RD, Gostin LO, Kahn J, Bonnie RJ, Kass NE, Mastroianni AC, Moreno JD, Nieburg P. 2002. Public health ethics: Mapping the terrain. Journal of Law, Medicine and Ethics 30(2):170–178. Dobbs DB, Keeton RE, Prosser WL, Keeton WP, Owen DG, eds. 1984. Prosser and Keeton’s Handbook on Torts, 5th ed. Thomson West.

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