Financial Incentives for Organ Donation

A Report of the Payment Subcommittee of the Ethics Committee (June 1993)

Introduction

The concept that financial incentives be offered as a potential solution to the ongoing organ donor shortage has been previously considered and debated among experts in the fields of transplantation, ethics, law, and economics (1) . The background for this proposal remains the ever-growing need for increased organ acquisition and the undeniable fact that the current system, despite 30 years of experience based on altruistic donation, has yet to meet this need. Historically, the current system of organ donation based on altruism evolved during the 1960's and 1970's when issues such as the definition of brain death, the use of donor cards, and public attitudes toward donation were only just evolving. Based on the Uniform Anatomical Gift Act and the National Organ Transplant Act of 1984, the buying and selling of organs has been specifically prohibited (2). In the late 1980s required request legislation was adopted, but has yet to demonstrate a significant effect in the rate of organ donation.

Few could argue that the number of cadaveric organs procured by the current system has failed to meet the demands that exist today. Whether this failure is due to deficiencies of knowledge and interest of the medical profession, public distrust, fear and ignorance of a system which is poorly understood, or, to a certain degree, inefficiencies in organ procurement organizations, the fact remains that the list of potential recipients continues to grow at a rate approaching 20 percent per year while the number of donors has risen by only half that percentage over the same period. Actually, an argument has been made that the supply of traditional donors is lower due to decreased rates of accidental deaths and concerns about transmissible disease such as AIDS and hepatitis, and that any recent gains in organ donation have come in the form of "non-traditional" donors, specifically those over the age of 55 (1) .

With approximately 31,000 potential recipients on the UNOS waiting list and only about one-third of the 10,000 to 12,000 potential cadaveric donors per year donating organs, the risk of death while waiting for transplantation becomes ever more significant. Since most cadaveric donors involve "vital 'organs" (heart, liver, lung, heart/lung), there is a significant mortality rate (8.5-15.2 percent in 1992) for those waiting for these organs. Overall, UNOS statistics for 1992 report that 2,567 patients died while on the waiting list for solid organ transplantation -- i.e., seven patients per day.

Proposals to increase organ donation include presumed consent, preferred status, and financial incentives, all of which merit further discussion. The intent of this White Paper is to focus on the financial incentives proposal -- the rationale, possibilities, arguments for and against, and the potential ethical dilemmas of this approach to increase cadaveric organ procurement.

Definition of Financial Incentives

A definition of terms is necessary prior to a discussion of the concept of financial incentives for organ donation. First, financial incentives, as discussed here, do not mean additional monies spent for public or professional education or recognition and counseling of organ donor families. Because the concept of financial incentives fundamentally changes the process of organ procurement, it has been argued that the term "donor" is no longer applicable and would need to be replaced by a term such as 'vendor." The term "rewarded gifting" has been suggested and has been justly criticized as an oxymoron by those opposed to financial incentives and a despicable euphemism by those who promote this concept. Of greatest practical significance is the distinction between "incentive" and "payment" since a system of financial incentives may indeed be a viable option if, as interpreted by law, "incentives" do not amount to "purchases" and "donors" are therefore not transformed into 'vendors."

For purposes of distinction, financial incentives will be considered as any material gain or valuable consideration obtained by those directly consenting to the process of organ procurement, whether it be the organ donor himself (in advance of his demise), the donor's estate, or the donor's family.

The form that a financial incentive may take must also be defined. Direct payment of a lump sum to the decedent's family or estate as advocated by Peters and others is the simplest straightforward form of payment; however, for the same reason, the most easily criticized form of financial incentive (3). A set reimbursement for funeral expenses has been suggested as a "softer," less direct means of reimbursement but, in practical terms, amounts to much of the same thing.

Finally, a form of "donor insurance" or "futures market" in organs, whereby an individual agrees in advance to donation, with payment to his beneficiaries or his estate taking place only after donation, has been suggested (1). This more innovative and perhaps radical proposal would allow individuals to "opt in" to the donation process while still living and their families or estate be compensated at such time as they actually become donors. As noted by Cohen (1) , this system respects the autonomy of the individual and avoids negative action to preclude donation ("opting out"), as well as the difficult process of discussing donation at the time of one's death. However, like the system of "market based procurement" proposed by Barnett et al. (4) (with procurement firms actually recruiting donors and acting as organ brokers based simply on supply and demand), purely "economic approaches" to organ donation may start "the ultimate slide down the slippery slope" -- i.e., the human body literally becoming a commodity to be bought, sold and bartered for in a manner similar to any other good or service.

To implement any form of financial incentive or even initiate a pilot program in this area, the current legal ban on "payment for organs" would have to be rescinded. Such a reversal of public policy could be interpreted as either poor judgment at the time these laws were originally considered or inconsistency in our philosophy as to the question of financial considerations for "donors." Ultimately, the risk of reversing the current legal ban on payment could result in the abuses (brokering of organs for profit, rich advantaged over poor, etc.) that currently occur in some developing countries and have thus far been avoided in the United States because of the legal limitations of our system.

Surveys of Public Attitudes

Whichever form financial incentives take, this White Paper, like the one that preceded it from the Subcommittee on Incentives for Donation of the UNOS Ethics Committee in 1991, will presume that such incentives are ethically justifiable only if found preferable to the other feasible options to increase donations: more efficiency in the current system, presumed consent, and preferred status. Since 1991, more information has been obtained regarding public attitudes toward such proposals, including the issue of financial incentives. The UNOS Ad Hoc Donations Committee White Paper on Alternative Methods (5) and the jointly sponsored UNOS/National Kidney Foundation survey(6) have provided interesting and controversial information regarding public opinion in this area. While these "opinion polls" have been criticized for their accuracy, polling sample, and true representation of prospective donors' attitudes, the information gained cannot and should not be totally discounted.

Both studies show that approximately one-half of those surveyed are in favor of some form of compensation (UNOS/NKF study 48 percent, UNOS Ad Hoc Donations Committee 52 percent). These attitudes tend to be age-dependent in that 65 to 68 percent of those under 35 years of age are in favor of some form of financial incentive and that this attitude decreases with age, with only 31 to 35 percent of individuals older than 55 favoring compensation. Generally, these studies also were in agreement regarding the effects of gender (males more positive toward financial incentives than females), income (positive response to financial incentives being inversely related to income level), and some geographic and regional variation.

It is also important to review public opinion regarding the response to the various proposals that have thus far been suggested as financial incentives. The UNOS Ad Hoc Donation's Committee poll found that those surveyed preferred either a set amount as reimbursement toward funeral expenses or payment to a charity of the donor's choice to be the preferred options. It should be emphasized that given the limited sample size and the fact that these polls did not specifically involve individuals who had previously participated in the donation process, these data may not reflect a true picture of the potential acceptance of financial incentives for donation. However, such information cannot be ignored, especially when groups such as the Ethics Committee of the American Society of Transplant Surgeons have also called for "well defined pilot programs" to study this question.

Arguments Favoring Financial Incentives

Arguments in favor of financial incentives for organ donation are founded in the hope that such a system would increase the supply of organs and thereby secure the basic ethical concern of saving lives that may otherwise be lost due to the lack of this resource. The fact that the current altruistic system of donation has been in place for 30 years without modification or change despite the different organs available (heart, liver, lung, pancreas) and the increased transplant activity today, has been cited as justification to consider a new approach. Specifically, because our current organ procurement system is based on financial gain for all concerned (physicians, surgeons, coordinators, social workers, hospitals, etc.), the altruistic "gift" upon which so many recipients depend has been described as unfair and insensitive to donor families and the source of basic distrust of the system by the public (3) . It has been argued that the donor and the family are the only participants not directly benefiting from the process and therefore, some form of compensation is the right thing to do, even if the number of donors and cadaveric organs does not appreciably increase.

Further, within the current climate of health care reform, financial incentives have become a part of medicine (Drs, preferred providers, etc.) and it might be reasonably assumed will become a greater part of health care delivery in the future. Under such an evolving system, a single fixed payment incentive for organ donation could potentially be interpreted as a message to prospective donors and their families that this process does not involve a unique moral decision, but only what is assumed as a societal obligation and expected of everyone who participates in the system.

Questions regarding the source of such financial incentives, and the potential increase in costs if such a system were implemented, have been answered by Alexander and others who propose that if 500 additional donors and therefore 1,000 additional cadaveric kidneys were gained, the potential savings to the medical care system would be over $30 million, many times the initial incentive outlay (1,3). Such savings, it could be assumed, could then be best applied to increase public and professional education regarding the need for organ donation and the process involved.

Ultimately, those promoting financial incentives for organ donation conclude that their motives are ethical because they are based on concern for patients and saving lives and not solely on abstract theories and issues without concrete answers. Universally, they call ' for pilot programs to be instituted to evaluate the potential effects of financial incentives for organ donation rather than rejecting this proposal based on yet unproved theoretical disadvantages (1,3,6).

Arguments Opposing Financial Incentives

Despite these proposals for pilot studies, compelling arguments against financial incentives for organ donation have been eloquently made since this concept was last considered by the UNOS Ethics Committee. Practical questions as to the source and amount of compensation, when during the process it would be offered, and how the system would be administered are raised first.

Moreover, those against financial incentives base their objections primarily on the argument that the current altruistic system has not failed as much as it has not been fully promoted. To support this position, it has been suggested that donation rates could decrease under such a system due to a backlash and losses from the current donor pool based on pure altruistic giving. Actually, it could be argued, this altruism extends beyond the donor and the donor family to include many others (neurosurgeons, neurologists, emergency room and intensive care nurses, etc.) who participate in the donation process without added compensation. In fact, anecdotal reports from organ donor families indicate that such incentives would be interpreted as "repayment" and would have changed their response to request for donation due to a perceived or real element of coercion.

Opponents of financial incentives point out that there would be potentially decreased emotional gain for the donor family, decreased respect for life and the sanctity of the human body, and a loss of the personal link that currently exists in the donation process. Great concern has also been expressed regarding a potential rich versus poor phenomena and the fact that financial need should not be linked in a coercive way to giving consent for organ procurement. Ironically, such incentives directed primarily at the black community would undoubtedly recall for many the past experience of "commerce in bodies" that is unfortunately a part of our country's history.

Beyond theoretical concerns, those opposed to financial incentives for organ donation predict the potential loss of control of this process to government bureaucracies and "organ brokers" with tremendous increase in administrative requirements and therefore cost. Such money would be better spent on more education for the public and the medical communities regarding the need for organ donation via the current system and the benefit to society as a whole through this process (1,7).

Beyond the fact that proposed incentives may actually prove to be disincentives to potential donors, it has been argued that financial gain by the donor family does not address the problem that many potential donor families are never asked. This failure by the medical community to participate in the donation process would not be addressed by incentives directed at the potential donor alone. Finally, not unlike the criticisms directed at the results of recent public opinion polls, those against financial incentives point out that field tests of such proposals would not measure all the possible effects and yet risk losing the best parts of the current system.

Recommendations

Perhaps more today than in 1991, the question as to whether financial incentives are ethically preferable to other available options to increase organ donation presents an extremely difficult question. Clearly, the current system could still be improved in the ways suggested by the previous White Paper (7). The opinion then was that emphasis be placed on education and training of procurement specialists, the public and the medical profession. Further, it was recommended that research be done to determine answers for still currently relevant question, as to why some families are not asked to donate and, when they are asked, why donations do not occur more often. Greater efforts to recognize donors and their families, remove financial disincentives, and specifically educate minority communities are also still important.

The question as to which option to increase organ donation is ethically preferable results in radically divergent viewpoints based largely on anecdotal evidence and personal belief. Even though public surveys and polls do not always accurately reflect true behavior, accurate information regarding the response of the public, and therefore the ultimate effect on organ donation, is needed. Until supportive data become available through polls that are universally accepted as accurate and representative, the feasibility and effect of financial incentives for organ donation remain questionable. Ultimately, only if and when financial incentives for organ donation are widely accepted as different from the purchasing of organs, can this alternative be proposed as preferable to the current system of altruistic organ donation.

References

1. Transplantation and Immunology Letter, Vol. VIII, No. 1, March 1992.
2. National Organ Transplant Act, Pub L No. 98-507, 3 USC g 301.
3. Peters TG: Life or death: The issue of payment in cadaveric organ donation. Journal of the American Medical Association, 265(10):1302-1305, 1991.
4. Barnett AH, Blair RC, Kaserman DL: Improving organ donation: Compensation versus markets. Inquiry, 29:372-378 (Fall 1992, published by Blue Cross and Blue Shield Association).
5. UNOS Ad Hoc Donations Committee White Paper: Alternative Methods, 1991.
6. Organ Donation Study: Executive Summary of a National Survey. National Kidney Foundation, United Network for Organ Sharing, Southeastern Institute of Research, Inc., December 1992.
7. Are financial incentives for obtaining organs ethically justifiable? Subcommittee of Incentives for Donation, UNOS Ethics Committee, May 1991.