Organ transplantation has developed its very own prime directive: the generation of a greater supply of transplantable organs. The reason for this may be the only simple part of an increasingly complex equation because the laudable goal, an adequate supply of organs retrieved in timely fashion and transplanted into critically ill patients, has remained far from reality.
The United Network for Organ Sharing (UNOS) is a non-profit organization established by Congress in 1984 that seeks to encourage organ donation and distribute available organs equitably. Currently, an average of seventeen people die each day following a futile wait for organs on the UNOS waiting list. There are just not enough organs to go around. In 2001, 6400 people in need of a transplant died before an organ became available. In the case of single organs such as livers, there is at least a ten-percent mortality rate among those awaiting a transplant—an estimate that is most certainly too low.[1] Unfortunately, end-stage liver disease does not permit the luxury of time. During the 1990s, approximately 13,000 people were added to the waiting list for livers, while only 1549 livers were donated. Statistics for other organ waiting lists are equally grim. It is clear that the supply side presents the "rub" for organ transplantation. The proposed answers to the question of how to obtain more viable organs, appropriately called "scarce non-renewable resources," include several innovations that deserve significant reflection.[2]
Redefining donor eligibility has been one response to the organ supply crisis. Since the "gold standard" for single organ donation has been "brain dead" donors, this time-honored definition of death has been regarded as an impediment to obtaining an adequate supply of transplantable organs. In order to qualify for brain death, a person must have lost all brain function irreversibly while retaining heart, lung, and liver viability. Such a prospective donor usually presents after trauma, such as gunshot wound or vehicular accident. The recent movie Blood Work portrays the limited availability of such donors. If precious time is lost at the scene, a prospective donor's organs may no longer be viable by the time he arrives at the hospital. As a result, new definitions of death have been posited. So-called asystolic donors (formerly termed "non-heart beating donors") do not qualify for brain death criteria, but rather are declared dead when their heart stops beating. In some protocols, if a person goes a mere two minutes without a heartbeat, he may be deemed a candidate for organ donation. Interestingly, this new definition of death has been gerrymandered solely for prospective donors and not for other dying persons. It should be that death and dying, much like dusk and dawn, should be regarded as clearly separate for all persons—whether they are candidates for organ donation or not. The dead donor rule—which holds that an organ donor must be declared to be irreversibly and unequivocally dead (and not merely dying)—has served transplantation well and should be universally retained. Asystolic protocols break that rule since asystolic persons are not dead.
Payment for organs has been proposed despite the recognition that paid donors are often among the exploited poor. In India, 96% of paid donors donated their organs in order to pay debts (JAMA 2002; 288:1589–1593). The average payment for a kidney was a mere $1070, and the middleman brokering the deal received substantially more than this. Average paid donor family income actually decreased after organ donation, with 86% of the donors reporting a decline in their health.
Another questionable supply-side solution is called the living adult liver donation. Presently, organ donations from the living outnumber those from the dead. Unfortunately, however, living individuals who donate part of their liver to adults die at a rate exceeding live kidney donors (1% vs. .03%, respectively). Some donors in this context have required liver transplants themselves due to liver failure incurred as a result of the donation. Although this model has increased the supply of livers, at what cost has this end been accomplished?
The most recent proposal to increase the supply of transplantable organs has been termed a "preferred" organ bank such as LifeSharers (www.lifesharers.com). The premise is simple: upon joining LifeSharers, a member promises that when she dies, her organs will be offered first to a member of LifeSharers, and then secondly to UNOS if no one in LifeSharers can use the organ. This is called "directed" donation and is perfectly legal since no money changes hands. According to the LifeSharers web site, their reason for existing is because "when organs do become available, about 80% of them go to somebody who hasn't agreed to donate their own organs when they die. That's not fair. By joining LifeSharers you help make sure that you'll get treated fairly if you ever need an organ."[3]
David J. Undis, Executive Director of LifeSharers, has already responded to a number of initial criticisms of his program. To those who worry that LifeSharers will "create a preferred class of organ recipients leaving needy people to die," he insists that they are worried about the "wrong thing." He explains that needy people who might die are likely to be helped, not hurt (provided that they join the program). He contends that if enough people join LifeSharers, the mutual pact will generate more transplantable organs. However, one problem is that if brain death is the sole criterion utilized for donor eligibility, Mr. Undis's expectations may be unreasonable. Given that the cessation of all brain function without heart, kidney, and liver damage is a rare occurrence, LifeSharers would need at least 17,500 members to achieve a 50% chance that one member per year would become an organ donor.[4] However, after 8 months of LifeSharers activity, only 361 people have registered. It would be unacceptable to improve these numbers by adding asystolic or other potentially harmful live donor protocols to the "preferred" mix. Such a change—which would constitute a disregard for the dignity of donors—lies at the heart of the problem. If a dying LifeSharers member sincerely believed that the use of asystolic criteria were unethical but such a definition of death was legal, would he still be obligated to donate his organs? Such possible ramifications have not yet been discussed by preferred organ banks with adequate precision.
In arguing that his system improves upon the present reality that 80% of contemporary organ transplant recipients have not agreed to donate their organs upon their death, Mr. Undis is hoping to apply a type of "Golden Rule" to organ donation—"be willing to be an organ donor if you want other people to be an organ donor for you (should you ever need it)."[5] LifeSharers is certainly creating a higher moral standard in the field or organ donation, but it will likely have the unintended effect of (at least occasionally) causing a member of LifeSharers to leapfrog over another more needy UNOS person. This effect, while not desirable, is ethically acceptable if the system improves the overall number of organs available and ultimately saves more lives as Mr. Undis hopes.
While I have concerns over preferred organ networks, I would like to commend Mr. Undis on many levels. While he is responding to the supply-side crisis of organ donation in a way that in my estimation might not be completely practical, he is earnestly trying to achieve equity in organ supply and distribution. A necessary improvement to such networks is a clear rejection of potential use of asystolic criteria in death. This, at the least, should be affirmed.
Isn't it about time that we reconsider the fundamental question here? Should we be simply searching for any method of generating more organs, or, rather, seeking a solution that protects the dignity of donor and recipient equally? Many of the recent modifications to the "dead donor rule," to adult liver donation, and to the consideration of payment for organs are simply addressing the wrong question. It should come as no surprise, then, that as a contingent they are coming up with the wrong answer. As more and more venues seeking to increase the supply of organs are suggested and piloted, society must not lose sight of the profound ethical ramifications. The dignity of the living and dying remains at stake and must be factored into the equation.
References
[1] For example, patients who have become too ill to receive a transplant are removed from the waiting list and are not counted in the mortality statistics, though their deaths are likely due to the fact that they did not receive a life-saving organ before their condition grew irreversibly grave. The average waiting time for a liver transplant has recently ballooned to 514 days!
[2] Due to the current experimental nature of xenotransplantation (cross-species organ transplantation), this option is not discussed here.
[3] http://cbhd.org/resources/aps/rutecki-comment1.htm.
[4] http://lifesharers.com/whyjoin.htm, accessed February 10, 2003.
[5] B. McMenamin, Organ Pact, http://www.forbes.com/forbes/2002/1028/062a.html; article date October 28, 2002.