Organ Advertising: Desperate Patients Solicit Volunteers

Patients waiting on long lists for organ transplants have recently begun to take matters into their own hands, launching advertising campaigns to solicit organ donations. In one case, Todd Krampitz, a thirty-two-year-old liver-cancer patient, bought newspaper ads, leased billboards, and set up a tollfree

In another case, Bob Hickey needed a kidney transplant and paid $295 monthly to Matching Donors.com, a website that advertised for donors.2 Hickey received over five hundred offers, and he chose a thirty-two-year-old Tennessee man, Rob Smitty, as his donor.3 Hickey paid for Smitty's and his family's expenses to fly to Colorado, and planning for the surgery began. Given Smitty's history of drug abuse and his arrest record, the transplant surgeon, Dr. Igal Kam, became concerned that Smitty might have been motivated by an under-the-table payment, which is illegal under federal law.4 Kam postponed the operation to allow the hospital ethics committee to make a determination. The committee approved the transplantation two days later, and both men survived the procedure. Days later, Smitty was arrested for failure to pay $8,100 in child support, but anonymous benefactors posted the necessary funds for his release.5

These two cases were extensively covered in the local, national, and global media. Concerns were expressed by ethics professionals, though it appears that neither lawsuits nor formal criminal investigations were initiated. The putative success of these patients' advertisements is motivating other desperate patients to follow suit with their own advertising campaigns.6 These cases are igniting a debate about the ethics of advertising for organs and raising questions about the fairness and efficacy of the current system of organ donation.

Factual and Legislative Background

Organ transplantation has become a fairly routine medical procedure, saving or improving the lives of about 20,000 Americans per year.7 However, over 87,000 people continue to remain on the organ waiting list for months or years. Each year, 39,000 new donees join the list, and more than 6,000 die while waiting for a donor. The situation is getting worse, as both the numbers of those waiting, and the numbers of those dying while waiting, grow each year.8 Indeed, "the biggest problem facing the transplant community today is the extreme shortage of organs."9

Meanwhile, on the supply side, most organs come from cadaveric donors, and each donor can benefit as many as fifty recipients. Yet only about 14,000 people each year die in ways that allow for transplantation, and most of their organs are buried or incinerated, for lack of permission to transplant them.10

Because of this shortage, desperate patients turn to living donors, asking them to undergo surgery to donate a kidney, or a liver, lung, or pancreas segment. In 2003, there were 6,811 of these live organ donations, and almost ninety percent of these were from close relatives. There are the routine risks that come with any major, invasive surgery, but organ transplantation obviously creates additional risks. In kidney transplants alone, there have been seven donor deaths over a recent three-year period, or one for every 2255 donors.11 One commentator contrasts this risk with other routine medical procedures, stating, "the likelihood of death in living kidney donation is about 400 times higher than the risk of death from smallpox vaccination."12

The legal regime is fairly minimalistic. As one member of the Colorado hospital ethics committee explained, "there are very few laws" regulating the organ transplant system, which is "really built on a system of trust."13 In the U.S., the basic legal contours of organ donation were established by federal legislation and the Uniform Anatomical Gift Act (UAGA) of 1968, which all states adopted.

The UAGA requires that if a person records a preference for or against donating organs, those preferences must be honored upon death. section 6 of the UAGA provides that donated organs may be designated for a specific recipient. The National Conference of Commissioners on Uniform State Laws has recently opened the UAGA for revision, and the United Network for Organ Sharing (UNOS) Board has recommended changes to prohibit designations that discriminate on race, national origin, and so on.14 Recent legislative attention has also focused on transplants between HIV infected individuals. For example, Illinois has recently changed its laws to allow such transplants, thereby stopping the waste of those infected organs that would otherwise be discarded.11 Under a new Wisconsin law effective in 2004, living organ donors receive tax deductions for up to $10,000 in non-medical expenses (such as travel, lodging and lost wages) associated with giving an organ.16 Ten other states have introduced similar legislation.17

Federal law gives broad discretion to the Secretary of Health and Human Services to design and administer the system for procuring and distributing organs, primarily requiring that it be done "equitably" according to a ranked list based on "membership criteria and medical criteria." The secretary has contracted with the UNOS to administer the system.18 UNOS maintains the waiting list, which weighs seniority (time on the list), critical need, and the quality of the physiological match for a particular donated organ. Federal law bans the sale of organs, though it allows reimbursement for reasonable expenses.19

Ethics of Advertising for Directed Donations

The ethical questions surrounding these recent cases are multitudinous. Before these cases arose, there were concerns about the MatchingDonors.com website being an internet "scam," taking money from those who need organs, while the "chance of getting a donor [through the website] is very small."20 Indeed, the UNOS ethics committee resolved that it "philosophically opposes" Matching Donors.com, stating that "it exploits vulnerable populations (i.e., donors, transplant candidates, etc.)...and subverts the equitable allocation of organs for transplantation."21 But once the site worked to make a match and it was understood to operate on a nonprofit basis, a more favorable light was cast. Reginald Washington, chairman of the ethics committee at the hospital where the Hickey transplantation was performed, concluded that, "if crafted carefully, this will allow [donors] to be matched with people who need those organs. This is another tool. If properly used, it could be a very helpful tool."22

Aside from whether the website works, a larger problem remains: should individuals be permitted to cut to the head of the long organ waiting list by using their wealth to buy an advertising campaign to find a donor that will designate him or her as the recipient?23 The problem of wealth leading to differential access to organs is merely an instantiation of a general problem of differential health care access.24

This practice also gives rise to utilitarian (or efficacy) concerns about getting organs to those who need them most, as well as fairness concerns for those who have waited patiently in line. The status quo waiting lists serve both functions fairness, recognizing first come, first served, and efficacy/utility, recognizing critical need and physiological match. In some cases (perhaps including Krampitz's), the advertising may increase the size of the pie by persuading someone to donate an organ who might not otherwise do so. In these cases, others in the waiting list would not be made any worse off. But in cases such as Hickey's, where Smitty claims that he had already decided to donate before learning about Hickey's situation, the advertising simply moves the patient up in the line, ahead of those who may have waited longer, may have more critical need, or may be a better physiological match.25 In the end, if the practice of cutting in the organ line became widespread, more people could suffer.

On the other hand, advertising empowers the patient to do something in the slow and faceless system that has failed so many. Hickey says, "I don't have any shame about saying it's advertising. If we go on a list managed by the transplant center and the government, we don't have anything we can do. We just sit there waiting for someone to die."26 Moreover, as long as all parties involved are competent adults acting voluntarily, there is a liberty interest and perhaps a First Amendment argument for allowing such advertisements.

Aside from the line-cutting problems, such live organ donor transplants between strangers raise ethical questions about the medical duty to do no harm. After all, unlike most other medical interventions, the invasive surgery necessary to donate an organ does not make the donor any better off, but subjects him to the risk of complications, even death. In order to square this with the proviso to do no harm, one might turn to the definition of "harm," from one legal philosopher, Joel Feinberg: "Only setbacks to interests that are wrongs, and wrongs that are setbacks to interests, are to count as harms in the appropriate sense."27 One might expand the notion of interests to include altruistic interests that the donor has in helping others, or one might focus on the notion of wrong, so as to say that procedures done on the basis of informed consent are prima facie not wrong. In any case, it is clear that such procedures require close scrutiny.

Systemic Questions

These multiple ethical problems are overshadowed by systemic questions. After all, advertising for live organ donations is an act of desperation, one that would be unnecessary if there were a sufficient supply of cadaveric organs in the first place. Until recently, the debate over organ transplantation has turned on three alternative systems: an organ market, routine harvesting of organs (also known as "presumed consent," or "opt-out" systems), or the status quo system of altruism.28 These create existential choices: Do we want to be the kind of society in which everything, even our bodies, is for sale? Do we want to be a society in which the government confiscates whatever it deems necessary? Or do we want to be a society that talks about altruism, but allows many people to die who could be helped?

In this moral impasse, recent attention has focused on proposals to create a "preferential" system i.e., one that links organ procurement with organ distribution, so that those who are willing cadaveric organ donors receive preferential access to the organ pool if they someday needed one.29 Thus people would have a reason, as a matter of prudence, to sign up as organ donors. The flip side of this coin is that under such a system, those who do not choose to be organ donors are discriminated against when it comes time to distribute organs.

Such a preferential system seems fair on its face - after all in a time of shortage, why should people be permitted to free-ride on the organ system, taking organs but refusing to give them? Indeed, as long as there are more organ takers than givers, it is not surprising that there is a shortage.

On the other hand, preferential systems give rise to questions of both efficacy and ethics. The chance of any one person needing an organ is remote, and people have lots of other things to do besides planning for such contingencies. Even if it were in their interests, many would likely still never get around to signing up, and thus the donor pool might not grow significantly. Further, is it fair to discriminate against people who have simply never considered being an organ donor? It is one thing to discriminate against those who have consciously decided to be free-riders, but such dire consequences should not be imposed on those who have simply never considered it.

Some states, including Texas and Virginia, have experimented with mandated choice systems where all persons are required to decide whether to donate an organ when they apply for a license at the Department of Motor Vehicles (DMV).30 Even if a preferential system were imposed under such a mandatory choice regime, it would still be ethically problematic. After all, in a preferential organ system, saying no is tantamount to the refusal of a life-saving treatment. In analogous situations, where a patient is considering forgoing chemotherapy for example, the patient might deliberate for weeks over the decision, searching his or her soul, vividly experiencing the tradeoffs of pain and standard of living, consulting doctors, chaplains, and family members. Such a robust process of informed refusal is a stark contrast to making a medical decision on the spot standing in line at the DMV, years in advance, anticipating a remote hypothetical situation, without counsel.

In a parallel question, it may be worthwhile to consider why we do not require all persons to decide at the DMV whether to be resuscitated in hypothetical future emergencies. Because resuscitation is in the typical person's interests, we instead have an opt-out policy of resuscitating everyone, unless there is explicit notice of a contrary decision.31

Several European states have implemented opt-out organ systems, with mixed success, but the ethics of such systems are questionable since, unlike resuscitation, there is no reason to presume that the typical person would consent as a matter of prudence.32 Yet in a.preferential organ system, being included would be in the typical person's interests (as it would improve his or her chances of someday getting a needed organ). Thus, could an optout, preferential organ system be efficacious and fair?33 Under such an opt-out preferential system, the few who wanted to remove themselves could do so through robust informed refusal processes, without imposing on the majority who are tacitly content to both give and receive.

For any organ system to succeed, doctors must actually remove organs when appropriate in these tragic and sometimes chaotic emergency situations at the end of life.34 For those individuals who did not opt-out, a hybrid system's preferential basis may help persuade surgeons and next-of-kin to proceed with organ removal, since the deceased person received preferential protection throughout his or her life, and now has a patent obligation to reciprocate. Indeed, aside from these structural changes, study ought to be done on the rhetorical framing of the organ decision as one of altruism versus one of reciprocal cooperation.35 People may be more willing to give if it was a matter of reciprocal duty - i.e., repaying a debt, rather than one of anonymous charity.

Conclusion

Organ advertising is the tip of the ethical iceberg of organ transplantation. While giving rise to its own problems of fairness and utility, it also requires us to ask why there is such a large organ shortage, and why so many usable organs are buried or incinerated. Indeed, the giving and receiving of organs begs even larger questions about who we are and what we owe to each other.