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Organ Donation: Opportunities for Action 8 Incentives for Deceased Donation The committee was asked to examine the use of financial and nonfinancial incentives to increase the supply of organs from deceased donors. A financial incentive is the provision of something of material value to motivate consent for organ removal. For example, a direct payment could be made in exchange for the organ, with the price for the organ determined by the free market or set by regulatory authorities. In either case, the exchange of money for organs would constitute a purchase and sale. Alternatively, financial incentives might be used to induce donations, just as the prospect of a tax deduction is used to induce charitable contributions. Such incentives might be a cash payment usable for any purpose; a cash payment earmarked for a specific purpose, such as funeral expenses or a charitable contribution; or a material good or service, such as bereavement counseling or health insurance. The financial incentive could go to the donor before death or to the donor’s estate after death in exchange for the donor’s agreement to allow his or her organs to be recovered after death. In situations in which the donor’s family makes the decision to donate, the incentive could go to the family. Nonfinancial incentives to donate could take the form of community recognition or preferential access to donated organs. Community recognition might be a public appreciation ceremony or a medal of nominal material value provided to individuals who register as potential organ donors or to the families of deceased donors. Preferential access might be given by establishing a rule that those who have previously registered as organ donors receive organs ahead of those who have not, or it might be given by
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Organ Donation: Opportunities for Action adding extra points for being a registered donor to the priority score used to allocate organs to recipients. After a short review of the history of the current prohibition against the sale of organs, the chapter addresses direct payments for organs within free-market and regulated-market models. The chapter then examines the use of financial incentives to reward and induce donation. Finally, the chapter analyzes nonfinancial incentives, particularly preferred status on organ waiting lists, for people who record their willingness to be organ donors. HISTORY AND CONTEXT In the United States, organs from deceased individuals become available for use for transplantation through donation by express consent. In the 1960s, as it became possible to use organs from deceased individuals, it was sometimes unclear whose consent—the decedent’s, while he or she was alive, or the family’s after the person’s death—was necessary and sufficient for donation because of variability in state laws. Resolving this uncertainty, the Uniform Anatomical Gift Act (UAGA) of 1968 authorized express donation by individuals and, in the absence of the decedent’s prior choice, by the family. Although UAGA focuses on gifts or donations, it did not rule out transfer by sale; it simply did not address sales at all. According to the chair of the UAGA drafting committee, the drafters did not intend to encourage or discourage payment for organs but instead left the matter entirely up to the states (or, preferably, individual conscience). He noted: “It is possible, of course, that abuses may occur if payment could customarily be demanded, but every payment is not necessarily unethical…. Until the matter of payment becomes a problem of some dimensions, the matter should be left to the decency of intelligent human beings” (Stason, 1968, p. 927). Sales had been illegal in some states prior to the UAGA’s adoption in the late 1960s and early 1970s. However, most of those statutes banning sales were repealed when UAGA was adopted, and the legal status of organ sales or purchases for transplantation “remained uncertain” in most states, although it remained legal to buy and sell blood and sperm (Hansmann, 1989, p. 59). Little public debate about this matter occurred until the early 1980s, when organ transplantation entered a new era with the availability of much improved immunosuppressive medications and with improved outcomes after transplantation. As a result, concern about the chronic scarcity of transplantable organs increased and several congressional committees and subcommittees held a number of hearings on transplantation. These hearings addressed several topics, including a possible federal ban on organ sales. This topic became all the more urgent when a former physician in Virginia proposed to set up a brokerage firm to purchase organs, particu-
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Organ Donation: Opportunities for Action larly in developing countries, for transplantation in the United States. Expressions of outrage were widespread (Denise, 1985), and the 1984 National Organ Transplant Act (Public Law 98-507) 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 enacted bans. These legal bans did not end the discussion. The discrepancy between organ supply and need remained troubling; and even though the rates of organ donation increased, they remained disappointing, even with the adoption of measures such as required request, which assumed that there was no shortage of givers, only a shortage of askers (Caplan, 1984; Caplan and Welvang, 1989). Not surprisingly, proposals for the use of financial incentives and new nonfinancial incentives emerged with greater frequency and forcefulness. The most radical of these proposals involved legalizing the purchase and sale of organs in a free market. In fact, allowing an unregulated free market in organs is too radical a departure from current practice to be a feasible alternative. The policies under active consideration are more likely to involve the provision of limited financial incentives defined through administrative processes and provided under highly regulated conditions. Nevertheless, consideration of the case for such a market is a useful exercise. It shows that an unregulated free market is unlikely to live up to the claims that its advocates make for it, given the actual circumstances of the human organ supply and organ demand in the United States. Consideration of the case for a free market in organs also provides insights useful in the evaluation of the more limited incentive-based proposals for increasing the supply of organs available for transplantation. WHY A FREE MARKET IN ORGANS IS PROBLEMATIC Many economists begin from the position that a market is almost always the best way to allocate a scarce resource. In the standard model of a competitive market economy, markets use prices to allocate scarce resources in an automatic, decentralized fashion. In each market, the price of the good adjusts until the amount that suppliers are willing to sell at the prevailing price equals the amount that consumers are willing to pay. A higher price coaxes out more supply by making it worthwhile for producers to produce more of the good or, if the total amount of the good is fixed, by encouraging the current owners to put more of the good up for sale. On the demand side, a higher price chokes off demand, as some buyers decide that the good is not worth the new price to them. In this model, the market outcome can be considered both efficient and equitable, provided the distribution of income and assets meets a commu-
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Organ Donation: Opportunities for Action nity standard of fairness. On the demand side, price rations the good to the people who value it the most, that is, those who need it the most, where need is assessed by the people concerned rather than a regulatory body. On the supply side, the supplier is compensated for the cost of production, including a reasonable profit; and in general, resources are directed to the most productive uses. If all markets are perfectly competitive, the resulting distribution of goods is efficient; and because it is the result of voluntary trades from a fair initial distribution of income and assets, it can be argued that it is also equitable. On the basis of this model, permitting a market in organs could be an equitable and efficient way to achieve an increase in supply that would reduce the number of people on organ transplant waiting lists. However, this conclusion is dependent on the accuracy of the strong assumptions that underlie the theoretical model. When the assumptions do not hold, the normative arguments for the desirability of markets do not hold either. A market process might still be preferable to the available alternatives as an instrument for increasing the organ supply, but the case for it must be built, brick by brick, in light of the actual circumstances. Because the application of the market model raises different issues on the supply side and the demand side, the chapter will address them separately. The Supply Side of an Organ Market The market model’s assumptions about supply seem most plausible for living donors. In living donation, a mentally competent adult has an organ (or organ part) that can be supplied to the market at some risk and financial cost. When the person donates the organ or organ part, that is, supplies it at a zero market price, he or she suffers a loss as a result of the discomfort of the operation, the opportunity cost of the time involved, and the long-term health risks. The donor’s expectation of a benefit to the recipient is some compensation for this loss, which is why some organs are supplied at a zero price. Reducing the donor’s loss by making a financial payment for the organ seems fair, however, and it seems likely that more people would be willing to provide organs as a result. In an efficient market, the additional organs would come from those who require the least financial compensation for the organ and for enduring the donation process. In evaluating a policy of allowing payment for organs from living donors, two issues that are not assumed in the standard market model become important: distributional inequity and imperfect information. Many people would agree that large, unjust disparities in income and assets exist among Americans. Poor people value extra money more highly because they need it for basic necessities, so the additional organs are likely to come from the poor, a result many find morally troubling. A common economist’s
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Organ Donation: Opportunities for Action response to this concern is, “True, the distribution of income and assets is not fair. But if society cannot (or will not) do anything about it, is it fair to deprive people of an opportunity that they believe would improve their situations? Competent adults should be free to make their own decisions about the medical procedures that they will undergo and the risks that they will take.” This argument is compelling superficially, but it assumes that the organ suppliers have the information and the capacity that they need to make the decision. Information about the long-term risks of donation may not be complete, and the buyers of organs have an incentive to understate the risks. In an unregulated market, organs are likely to come from people who do not fully appreciate the risks that they are taking. Avoiding this result would require the development of complete information for potential living donors and other efforts to ensure that the decisions made by living donors are fully informed, which would require planning and substantial resources. Concerns about inadequate information arise, however, even under the gift model now in place and are discussed in Chapter 9 of this report. The living-donor case is mentioned here mainly to contrast it with the far less straightforward case of obtaining organs from deceased donors. In the latter case, the organs become available only when the person dies. There is no risk to the donor at that point, but a financial payment would not provide any direct benefit to the donor either—the benefit to the donor arises from the interest that the donor had while alive in providing for the well-being of his or her family after death. In practice, the family of the donor often makes the donation decision, and market advocates usually assume that the payment would be made to the family. Essentially, this means that the family is selling a relative’s body parts, which raises the issue of cultural norms surrounding the treatment of dead bodies. Commodification of Dead Bodies Most societies hold that it is degrading to human dignity to view dead bodies as property that can be bought and sold. As explained in Chapter 3, bodies are supposed to be treated with respect—with funeral rites and burial or cremation—and not simply discarded like worn out household furniture and certainly not sold by the relatives (or anyone else) to the highest bidder. These norms are very powerful. Illicit markets for bodies have existed throughout history; for example, in the 19th century, England had an illicit market in which bodies were dug up in the night by body snatchers and sold for dissection, arguably a socially useful purpose (Richardson, 2000). Buying and selling bodies for dissection was considered a despicable business, however, and even desperately poor people did not willingly sell their relatives’ bodies for whatever they could get.
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Organ Donation: Opportunities for Action Organ transplantation has provided a compelling justification for using the body parts of deceased individuals, namely, the opportunity to restore life and health to someone on the brink of death. Many people see donating a person’s organs for this purpose as a highly meritorious act that honors the sacredness of the body rather than degrades it. At the same time, however, many people regard the act of donating the organs for this purpose as being conceptually and morally distinct from the act of selling the organs (even when the organs are to be used for the same purpose). Currently, the sale of solid organs is prohibited, but the prohibition reflects preexisting and widely accepted cultural norms. In the context of these norms, and the attitudes underlying them, it is not at all clear that the supply of organs from deceased donors would actually increase if sales were made legal. It is possible that the reasons people have for not donating cannot be overcome by money, or that offering money induces some to provide organs while leading an equal or greater number of people who would have provided organs to decide not to. For example, family members may wish to avoid appearing to be profiting from a deceased relative’s body, especially if there is any chance of appearing to have participated in a treatment decision that might have hastened death. (These concerns about how allowing the buying and selling of organs would affect the attitudes and behaviors of families are explored in greater depth later in this chapter.) Barriers to a Futures Market Traditionally, the relatives of deceased individuals had the final word about whether organs would be donated, but this has been changing. Because society supports the right of individuals to control what happens to their bodies when they are alive, it is a natural extension to assume that they should also decide what happens to their bodies after death. This adds more intricacy to the application of the market model. Because money is of no use to a corpse, for financial payments to influence the donor’s decision, one must introduce a futures market or a bequest motive into the picture. A futures market is a market in which the commodity bought and sold is the right to sell organs at a future time in the event that a person dies in circumstances that permit organs to be recovered and transplanted. The person receives payment for these contingent organ sale rights while he or she is still alive. Futures markets are inherently complex. In this case, the chances of dying in the appropriate circumstances are low, death may occur far into the future, and it may not be easy to execute the right to the organ at the appropriate moment; therefore, the right to a potential organ is not worth nearly as much as an actual organ at the time of death. What if sellers want to change their minds? Can they rescind their contracts and, if so, on
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Organ Donation: Opportunities for Action what terms? Also, once the rights to an individual’s organs have been sold, the buyer (who would probably be an organ broker) has a financial interest in the seller’s death. Some people already worry about receiving suboptimal treatment at the end of life if they are registered organ donors and adding financial interests resulting from the selling of organ rights might add to those concerns. Further, it seems unlikely that there would be enough interested investors to allow a private futures market in organ rights to develop, given the long time horizon required and the uncertainty about the size of the profits. Alternatively, one can assume that people get satisfaction in life from the knowledge that their heirs will receive inheritances when they die. If this is so, a person could be allowed to spell out his or her wishes for the disposition of his or her body in advance (in a will or in a special organ donor registry) stating whether his or her body should be buried or cremated intact, donated all or in part to a specific organization for a specific purpose, or sold whole or in part with the proceeds forming part of the estate. To the extent that more people would agree to organ removal if they had this option, the supply of organs would increase. This is an empirical question, and as before, there is no certainty of a positive effect. Again, implementation would be complex. For example, a registry would be better than a will, because one cannot wait until the will is probated to determine whether the organs can be sold. The possibility of such an advance directive is discussed later in the chapter. Other Complexities It has been assumed thus far in the discussion that paying people or their families for organs would increase the supply of organs for transplantation. However, some other complexities of the organ procurement process suggest that the creation of financial incentives for organ donation may be less important for donors and their families than it is for healthcare organizations and the participating healthcare professionals. A family does not simply make the decision to donate (or to honor the decedent’s wish to donate) and then it happens automatically. First, the potential donor must be in the process of dying under the right circumstances to be eligible to donate his or her organs. Second, the medical staff must make the family aware of the possibility of organ donation. Only then does the opportunity to say yes or no to donation arise. Many people have not thought much about organ donation before the issue arises, and in any case, they are in an extremely stressful situation. How and when they are told about the opportunity for organ donation and the way in which the request is made can make a significant difference to the relatives’ response. Finally, the organs
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Organ Donation: Opportunities for Action must be removed, the recipients must be identified, and the organs must be transported to their final destinations. These are complex tasks that must be carried out under extreme time pressure. Many factors—including the structure of financial incentives to the healthcare workers and organizations that carry out these organ transplant-related activities—influence the way in which the process of notification, request, removal, and conveyance to a recipient occurs. If this process is the problem, the introduction of financial payments for organs may simply raise the cost of the transplantation process without having any effect on the number of organs recovered. The efforts and successes of the Organ Donation Breakthrough Collaboratives of the Health Resources and Services Administration suggest that the process is part of the problem and, indeed, is perhaps most of it (Chapter 4). The collaboratives have demonstrated that the application of quality improvement methods to the steps in this process can significantly increase the percentage of potential organ donations that are converted into actual donations. There is also potential to increase the organ supply through medical practice changes that make more decedents medically eligible to be organ donors (see the discussion in Chapter 5 on donation after circulatory determination of death), that is, to give more people the opportunity to consent. The Demand Side of an Organ Market The demand side of an organ market is also complicated. The simple market model assumes that those who benefit from the use of the good pay for the good, and this is an important element in the normative theory in favor of markets. In the case of organs, advocates for payments for organs from deceased donors generally do not expect the recipients to make the payments. Most people believe that health care is a special kind of commodity that should not be allocated strictly according to an ability to pay because of the unusual importance of health care to the well-being of all people and the uneven distribution of illness among the population. The distribution of health care, especially life-saving health care, should be determined separately from the distribution of other goods and in accord with special ethical principles. This is a major departure from the standard market model and means that even if a fair distribution of income and assets could be arranged, letting health care be determined by voluntary market trades would not yield equitable outcomes, even under the highly unrealistic assumption of the existence of a perfectly competitive market. In the United States, the result of this societal value judgment is a complex array of private and public policies that are implicitly or explicitly intended to provide people with care that they would not receive if all health care were distributed through unregulated private markets. Unfortu-
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Organ Donation: Opportunities for Action nately, there is no general, transparent consensus on the nature and extent of healthcare services that people should be able to receive without regard to the ability to pay and how the cost of that care should be distributed across the population. The unfortunate result is a financing system that distributes both care and cost arbitrarily in a manner that meets no rational standard of efficiency or equity. The U.S. healthcare system does not guarantee access to life-saving treatments such as organ transplantations, and the ability to pay does play a role in the distribution of this important good. Few people pay directly for organ transplantation, which is expensive even without payment for the organs. People in need of organs rely on public or private insurance to pay the cost of acquiring the organs and transplanting them, and a transplant is not received unless insurance coverage or access to charity care is available (the so-called green screen). Given this system of healthcare financing (or any system that might replace it), what would the demand side of a market for organs look like? Presumably, most of the actual buyers would be the healthcare organizations that perform transplantations. They would compete with one another for the available organs, the price would settle down at the market-clearing price, and the cost of organs would become part of the total charge to a third-party payer for an organ transplant. This market would inevitably be very complex. So far the chapter has referred to “the price” of an organ, but an actual market would have multiple prices for organs because organs are highly differentiated products. For example, hearts differ from kidneys and kidneys differ from one another along many medically significant dimensions. Organ recipients also differ from one another, and matching an organ with the right recipient is important in achieving the benefits of transplantation. This means that the kidney market or the heart market would actually be a whole set of interconnected markets for goods that are close substitutes for each other (e.g., kidneys or hearts from people of different ages, with different blood types, or different human leukocyte antigen factors). The price of a kidney would therefore actually be a price structure for all the different kinds of kidneys. This price structure would result from the interaction of the array of kidneys available with the variety of patients in need of a kidney at any point in time and the trade-offs among kidney characteristics that are medically possible for transplantation into various patients. Of course, the original suppliers and the end users of the organs do not have the medical knowledge to make sophisticated sales and purchase decisions, and even if they did, they are hardly in the best physical condition to apply their knowledge at the time of donation or transplantation. Like the rest of the healthcare market, this market would be characterized by complicated agency relationships (situations in which decisions are made by an
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Organ Donation: Opportunities for Action expert on someone else’s behalf). The various potential agents here would include the transplant recipient’s physician, the organ donor’s physician, the healthcare organizations in which the organ recovery and the transplantation occur, a specialized organ “broker” such as the United Network for Organ Sharing (UNOS), the private and public third-party payers that pay for the transplantation-related care, and so on. Real-world markets in which differentiated products are sold under circumstances of imperfect information and intricate agency relationships do exist, and such markets can be superior to other methods of allocation. In the case of organs, however, it is interesting to note that a nonmarket process for allocating organs to recipients and managing waiting lists has been in place since the beginning of the transplantation era. The Organ Procurement and Transplantation Network system grew up in response to a perceived need to manage the organ allocation process within the transplantation community, although it has come to have substantial government involvement. There is ongoing pressure to adjust the process to make it more efficient and equitable, with the usual difficulties in defining exactly what efficiency and equity mean in such a complicated context. There is also recognition that financial and other incentives should be aligned with ultimate goals, but little enthusiasm for relying completely on an unregulated market process exists. In summary, in a hypothesized market for organs, the good to be sold is highly differentiated and must be matched to the final user in many ways. The process of making an organ available requires skilled labor and technology. The good is highly perishable, and recovery and transfer to the final user must be accomplished under extreme time pressure. The good has unique cultural significance that would powerfully influence the response of suppliers to market incentives, even in the absence of the existing legal constraints on their behavior. Imperfect information issues are significant, and the end user is not in a position to act as an informed buyer. The need for information, skilled labor and technology, and third-party payment means that the market transactions involve complex agency relationships. With all of these departures from the standard assumptions of the market model, organ transplantation occurs in a world of imperfect markets when it comes to evaluating efficiency. A perfectly functioning market and a fair distribution of income and assets would not likely produce equity in the current healthcare system. As a society, it is not clear what an equitable distribution of health care and its cost would look like, but it is generally agreed that the distribution of organ transplants should not be totally determined by the ability to pay. Given all of these factors, the committee doubts that it would even be possible to have a well-functioning free market in organs from deceased donors. If such a market existed, there is no certainty that it would produce
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Organ Donation: Opportunities for Action a greater supply of organs. Moreover, a free market in organs would deviate substantially from prevailing norms in the United States regarding the nature of health care and the fair distribution of organs for transplantation, norms that have been developed within various communities of stakeholders and that are now well entrenched. REGULATED COMMERCE IN ORGANS The proposals that warrant more serious consideration involve cash payments for organs—or other financial incentives for organ donation—determined within a regulatory framework. They focus on obtaining organs while leaving organ distribution and allocation to other mechanisms, either current or newly devised. For concreteness, the committee considered the prototypical proposal to be one in which organs are purchased from the families of deceased individuals within a regulated system. It is assumed that the proposal specifies that either (1) the family makes the decision to provide the organs or (2) the individual makes an advance decision, with the family deciding only if the decedent’s wishes are unknown. In either case, if the decision is made to provide the organs, the donor’s family would be paid a specified price for one or more of the deceased person’s organs (assume $2,500 for a kidney). In theory, the regulatory framework could be established by the government, a private nonprofit organization, or some combination thereof. To be stable, however, the framework would have to have government sanction, and the details of its structure would therefore be perceived to be an expression of social values. The committee’s evaluation of this proposal proceeds in three steps. (1) Should organs be bought and sold? Here the commodification problem is addressed. (2) If it is assumed that the selling of organs is not categorically objectionable on moral grounds, would payment for organs actually increase the supply? (3) If it is assumed that paying for organs would increase the supply, is doing so at this time the most cost-effective policy option? Should Organs Be Bought and Sold? The first question that arises is whether society should allow organs to be sold at all, even when the price is regulated and the organs are to be used to save lives. As indicated in the previous section, the existing approach—in which organs are gifts rather than items for sale—rests in part on a widely shared supposition that solid organs of deceased individuals should not be bought and sold. This tradition is expressed in the ban on the exchange of organs for valuable consideration in the National Organ Transplant Act. The basis for this traditional view is explored to consider the possibility
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Organ Donation: Opportunities for Action Furthermore, if a payment does not increase the organ supply in the pilot study, it could be argued that the circumstances of the pilot study were at fault, that the payment should have been a little higher, and so on. Finally, conducting the pilot study might make it difficult to retreat to the original position of prohibition of the provision of financial incentives for organ donation, even if the study did not yield positive results. In short, the committee believes that a pilot study of the effect of financial incentives should be undertaken only if other, less controversial strategies of increasing organ donation have been tried and proven unsuccessful and if, as a result, policy makers have become inclined to implement such a strategy. The pilot project would then be understood to be a carefully designed, initial step in the implementation of a new policy rather than as an experiment. Under the present circumstances, the committee sees little value in undertaking such an experiment. PAYMENTS AS A TOKEN OF GRATITUDE The committee’s charge was to consider ways of increasing the rates of organ donation in the United States. Therefore, the provision of anything of material worth in the context of donation has been considered primarily through the lens of its potential impact on the rates of donation. However, a funeral benefit, for example, might be presented exclusively as a token of gratitude rather than an incentive to donate (which is precisely how ASTS framed a proposed funeral benefit in 2002). Alternately, a funeral benefit might be understood as a form of good stewardship or proper treatment of the deceased body that was made available to the transplantation community before the funeral services. This view suggests that, through the act of donation, the transplantation community acquires an interest in the proper burial or cremation of the deceased body; the interest may not be as strong as the immediate family’s but nonetheless sufficient enough to contribute to funeral expenses. Although the committee acknowledges that these motives for covering a funeral expense are both legitimate and morally distinguishable from the motive of increasing organ donation rates, the committee rejected the proposal to provide funeral benefits, even if it is justified and explained on these grounds. First, because such benefits are of material value, it is feared that the public would not distinguish them from payments for donation or for the organs themselves. This could then contribute to perceptions of duplicity or deception. Second, because the benefits involve material value, there is no way to prevent them from functioning, in economic terms, as financial incentives; and thus, they potentially raise the same concerns as financial incentives including the risk of diminishing the meaning of dona-
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Organ Donation: Opportunities for Action tion for families, crowding out of other motivations, or polarizing the community. The committee hastens to emphasize that societal expressions of gratitude toward deceased organ donors (e.g., a donor medal of honor) are appropriate, but tangible gifts should not have such significant material value that they would provide a monetary incentive for donation. NONFINANCIAL INCENTIVES: PREFERENTIAL ACCESS TO DONATED ORGANS The two forms of nonfinancial incentives generally proposed are community recognition and preferential access to donated organs. Community recognition might take the form of a public appreciation ceremony or the awarding of a medal of nominal material value to people who register as potential organ donors or to the families of deceased donors. There is general agreement that the decision to donate deserves gratitude and community recognition, but it is also agreed that the impact of recognition programs on organ donation rates would be small (Arnold et al., 2002). The committee regards public expressions of gratitude less as incentives than as mechanisms of persuasion and as opportunities for raising the visibility of organ donation, capturing public attention, and communicating pertinent messages and information (Chapter 6). This section therefore focuses on preferential access proposals. Proposals to give people who have registered as organ donors preferential access to available organs conform to either of two models. Pure reciprocity models restrict the pool of organ recipients to those who are willing to donate their own organs (and, in some cases, to those not only willing but also eligible to donate their organs). Preferred allocation models do not restrict the pool of eligible recipients to people who have recorded their willingness to donate but add extra points for being a registered donor to the priority score used in allocating organs to recipients (just as UNOS’s current system awards priority points for medical urgency, the length of time on the waiting list for an organ, and the level of organ match). Such programs would be most effective with government sponsorship; however, because they are currently neither funded nor prohibited by U.S. law, implementation has occurred only in the private sector, for example, through the LifeSharers program, in which members use advance directives to direct donation to other members (LifeSharers, 2005). This section presents the arguments for and against these approaches, with attention to their impact on organ donation rates and their broader implications for the transplantation system, the healthcare system, and society. The two models are addressed together because the arguments
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Organ Donation: Opportunities for Action supporting and opposing them are similar. They are referred to collectively as either reciprocity-driven approaches or preferred-access approaches. Arguments for Preferred-Access Approaches To evaluate these proposals, it is necessary to imagine that the U.S. Congress had embraced a national program changing the legal structure of the organ transplantation system. Under a pure reciprocity model, the only people legally eligible to receive transplanted organs would be those who have recorded a willingness to donate pursuant to whatever procedures are specified. Under a preferred-status approach, regulatory authorities would be directed to conduct the necessary rulemaking to give allocation points to people on the waiting list who have registered to be donors in a qualifying manner. A pure reciprocity model would reduce the gap between the number of organs available and the number of people on the waiting list in two ways. It would shrink the waiting list by excluding individuals unwilling to donate organs, and it could potentially increase the supply of organs by providing a self-serving motive (potential eligibility for a transplant, if needed) to register as a donor to supplement the altruistic motive (Jarvis, 1995). What would happen to donor registration rates if such a plan were adopted? One article estimates that half of the people unwilling to donate their own organs are willing to receive an organ, so the number of people excluded might not be negligible (Kolber, 2003). However, if the policy were really in effect, it seems reasonable to assume that most people would register if they were aware of and understood the policy. In any case, these are critical assumptions that surveys have not addressed. The point is that it is simply not known whether the people who currently decline organ donation would become organ donors if a reciprocity-based legal structure was in place, accompanied by an aggressive public education program and full implementation. LifeSharers had roughly 3,300 members in 2005 and is thus far too small to provide useful data on the impact on donation rates of a public policy based solely on reciprocity. Moreover, testimonials on the LifeSharers website reveal that some of the members were already organ donors before joining LifeSharers and joined to implement a quid pro quo concept of justice, to increase their personal chances for obtaining an organ, or to reduce the size of the waiting list. Aside from the aim of increasing the rate of organ donation, those who favor a reciprocity model often emphasize that such a model would promote justice in organ allocation. Given the shortage of organs, any allocation system must give preference to some potential recipients over others. Although medical need is a reasonable criterion to determine whether one is a potential recipient, it is not the sole criterion even under present policies.
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Organ Donation: Opportunities for Action Proponents of reciprocity-driven proposals argue that fairness justifies preferential treatment of those who are willing to donate their organs (Kolber, 2003; Sackner-Bernstein and Godin, 2004; Steinberg, 2004; Veatch, 2004; Nadel and Nadel, 2005). “Free riders,” that is, those who are willing to receive an organ but who are unwilling to donate their organs even after death, would either be excluded from the system (as in a pure reciprocity model) or given reduced priority (as in a preferred-status model). The argument is that willingness to donate one’s organs—in contrast to other personal characteristics, such as race or “social worth”—is a morally relevant difference and justifies preferential access to donated organs (Jarvis, 1995). In addition, advocates argue that a reciprocity-driven model would promote a strong sense of community. Creating a reciprocity-driven model of organ donation and allocation might also enhance the perception that citizens are all mutually dependent members of a community with rights that depend upon a willingness to meet the duties that people have to each other (Steinberg, 2004). Finally, some claim that reciprocity models would achieve the goal of reducing the waiting list for organ transplantation without some of the ethical drawbacks that many find in financial incentives, for example, the commodification of the body or the risk of exploiting the poor (Nadel and Nadel, 2005). Although preferred-status models embrace the idea that a willingness to donate should carry moral weight in organ allocation, they are less radical than pure reciprocity models because they do not entirely exclude anyone from the system, treating willingness to donate as just one criterion for awarding allocation points. By the same token, however, the claim that implementing this approach would increase donation is correspondingly weaker. There is no direct evidence that giving registered donors preferred status would in fact increase the rates of organ donation. In the committee’s judgment, the argument for this approach seems to rest more on its signaling effect (emphasizing the importance of reciprocity) than on its incentive effect. Arguments Against Preferential Access The committee does not favor either of these models, largely because of insuperable practical problems in implementing them fairly. Even if it is assumed that an organ recovery and allocation system is properly grounded in reciprocity and that the adoption of either of the proposed approaches would increase the rates of organ donation, the committee is deeply concerned that they would not be fairly and carefully implemented and, as a result, that the adoption of either model would accentuate existing social inequalities and would disadvantage those who are uninformed about organ donation: most likely, poor people, recent immigrants, and the least-
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Organ Donation: Opportunities for Action educated individuals in society. To the extent that these models require individuals to be adequately informed about the option of donation and to have the opportunity to make their wishes known, they erect another potential barrier to health care, particularly among individuals who lack adequate access to the healthcare system (Siminoff and Leonard, 1999; Wigmore and Forsythe, 2004). It is worth noting that many people who believe that reciprocal obligation is an important moral underpinning of a system of organ donation nonetheless oppose proposals to replace the existing legal structure of allocation with one that either limits eligibility for transplantation to patients who have agreed to be donors or gives them legal priority in allocation (see, for example, Siegal and Bonnie, 2006). The Information Problem All proponents of preferred-access models concede that many people unregistered as donors—for example, children and adults who lack a decisional capacity—would nonetheless be entitled to equal access as potential recipients. Preferential access would be denied only to legally competent adults who had an opportunity to register and failed to do so. However, fair implementation of such a model would require aggressive public education so that everyone would be on an equal footing in deciding whether to register as a donor. People would need to be informed about the nature of organ donation and how to choose donation. A nationwide donor registry would need to be established and would need to rely unambiguously upon first-person (donor) consent. Without extensive education and a nationwide donor registry that is easily accessible to all citizens, a preferred-status system runs the risk of unfairly excluding people who have not been educated about donation or who lack easy access to donor registration (e.g., because they do not or cannot hold a driver’s license, which currently provides the most common opportunity to express donation wishes). The Adverse Selection Problem Any type of preferential access system based on a recorded willingness to donate presents what insurance experts call “adverse selection”; that is, that people who are most at risk for needing an organ will be disproportionately likely to sign up to be a donor. Should people be permitted to gain preferential access by agreeing to become donors only after they have discovered that they are likely to need an organ? If not, how should this rule be enforced? What about those who are not ill but who know that they are in a high-risk group? If people are permitted to register as potential donors after they already know that they are at higher risk of needing an organ, should they receive fewer allocation points than other people on the list
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Organ Donation: Opportunities for Action who registered before knowing that they were at higher risk? Should people with less desirable or extended-criteria organs receive a lower priority? In the committee’s view, there is really no way to substantially reduce the adverse selection problem without requiring everyone who signs up to be a donor to turn over their medical records and take a medical examination at the time of registration. Any significant degree of adverse selection erodes one of the strong moral arguments for reciprocity-driven approaches: the emphasis on a mutuality of interest and the effort to prevent free riding. The Unfair Allocation Problem Any type of preferential access based on donor registration introduces a criterion for organ allocation that is not related to medical need. Major institutional stakeholders such as UNOS and the American Medical Association have avoided the use of non-need-based criteria (Sanchez, 2003); for example, criteria that would give lower priority to patients with alcoholic cirrhosis, patients without dependents, or older patients. Although some factors unrelated to need, such as geography, are taken into account, the preeminent considerations relate to medical need and the predicted outcome. To the extent that reciprocity-based allocation embraces the idea that some patients merit a transplant (rather than need a transplant) more than others because they are willing to contribute their organs, these models would effect a significant change in the existing criteria for organ allocation. If society is going to step onto that slippery slope (Gillon, 1995), it is not clear why a willingness to contribute organs should be paramount. Why should not other contributions to society be taken into account? Some of the people most in need of an organ will be people who have never been medically eligible to donate, so their willingness to donate would be an empty gesture. What should be done in such cases? Is it fair to exclude people who could never have been donors, that is, those who were free riders from birth or adulthood? Not surprisingly, reciprocity-driven proposals typically grant equal access to potential recipients who are medically ineligible to be donors, recognizing that the reciprocity principle requires some qualification. What, then, about people who have a strong emotional or religious concern about donating their own organs? Should religious objection to donation preclude equal access to organs when they are needed? What if the religious objector had made other major contributions to society? The reciprocity argument also fails to take into account the lack of trust that some people from historically disadvantaged groups have in the healthcare system. A person who has inadequate access to health care and fears that organ donor status might increase his or her chances of receiving suboptimal treatment in a life-threatening health situation may be reluctant to be an organ donor, even though he or she would like to receive an organ
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Organ Donation: Opportunities for Action if he or she needed one. It is understandable why UNOS would strongly prefer to anchor allocation in medical criteria. CONCLUSIONS AND RECOMMENDATIONS In evaluating the various arguments for and against incentives and in arriving at recommendations, the committee has drawn on the assumptions and principles summarized in Chapter 3. The committee’s reasoning, summarized below, serves both to explain and to limit the reach of its recommendations. First, given the committee’s charge, the primary goal of any new incentive policies should be to increase the rates of organ donation rather than to serve other goals (for example, to enhance autonomy, express gratitude, improve the lot of the poor, or provide fair reimbursement). Other principles and values must come into play in delineating the ethical constraints on the use of incentives for donation, but they should not be decisive factors in the adoption of an incentives policy. Second, as noted above, hard data on the impact of incentives are lacking, although individuals on both sides of the debate have provided some a priori and some empirical data. Accordingly, recommendations might need to be revisited should better data become available. Third, obtaining reliable data to address these issues may be difficult. Although some have proposed an experimental approach to the use of incentives, others have expressed concerns about this approach. On the one hand, if financial incentives are ethically unacceptable in principle, then pilot testing should not be encouraged to determine whether they would actually increase the organ supply. On the other hand, if the concern is primarily consequentialist, then one is also concerned that pilot studies may set in motion a societal process that is difficult to reverse even after the pilot study itself is abandoned. For example, if people begin to view their organs as valuable commodities that should be purchased, then altruistic donation may be difficult to reinvigorate. As explained in Chapter 3, the committee believes that caution is warranted under these circumstances. Fourth, in weighing arguments for and against incentives, the committee did not require either side to carry the burden of proof. Rather, it is noted that both sides of the debate have argued that the other side should shoulder the burden of proof: proponents because they would deviate from the status quo; opponents because they oppose policies that allegedly would save lives (Radcliffe-Richards et al., 1998). Fifth, the committee’s deliberations have been influenced by the recent success of donation initiatives that do not rely upon donor incentives. The Organ Donation Breakthrough Collaboratives have demonstrated that the application of quality improvement methods to this process can signifi-
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Organ Donation: Opportunities for Action cantly increase the percentage of potential organ donations that are converted into actual donations (Chapter 4). Putting financial resources into this kind of improvement activity might well be a more cost-effective approach to increasing the organ supply than introducing financial incentives for donation and would avoid the controversial cultural issues that surround paying for human bodies. The collaboratives provide data suggesting that adopting best practices in the process of organ recovery and allocation could increase conversion rates from 50 percent to at least 60 percent; some institutions have achieved close to or greater than 75 percent conversion rates by following best practices models. Additionally, by implementing and expanding donation after circulatory determination of death protocols, it may be possible to greatly increase the number of available organs without the use of controversial incentives. Finally, much remains to be done to remove disparities in the provision of health care and to build trust in the medical community. Although incentives might serve to increase donation rates, the committee believes that the actual need for incentives can be determined only after equal access to the transplantation system by all groups in the population is ensured and by building the trust of those groups in the medical community. Moreover, the premature provision of incentives could be viewed as a sign of disrespect and as an effort to manipulate donation in the face of perceived injustices. Recommendation 8.1 Financial Incentives. The use of financial incentives to increase the supply of transplantable organs from deceased individuals should not be promoted at this time. (The term “financial incentives” refers to direct cash payments as well as contributions toward funeral expenses or to a charity of choice.) Recommendation 8.2 Preferential Access. Individuals who have recorded a willingness to donate their organs after their death should not be given preferential status as potential recipients of organs. This recommendation does not imply opposition to the assignment to living donors of additional points for the allocation of organs should they subsequently need a transplant. REFERENCES Altshuler JS, Evanisko MJ. 1992. Financial incentives for organ donation: The perspectives of healthcare professionals. Journal of the American Medical Association 267(15):2037–2038.
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Representative terms from entire chapter: