Our Current Organ Procurement System

In the United States, explicit consent is required before organs may be removed and used for transplantation. The Uniform Anatomical Gift Act, which has been passed in some form in all states and the District of Columbia, provides the legal framework for this process [5-7]. This statue gives all competent adults legal authority to decide for themselves whether or not they wish to become organ donors after their deaths. Unfortunately, relatively few people take advantage of this law and record their wishes about posthumous organ donation [8, 9]. Furthermore, even when such directives are available, organ procurement organizations still ask the family of the deceased for consent, despite the clear stipulation of the Uniform Anatomical Gift Act that the decedent's wishes must be honored [5-7, 10]. In effect, the law is simply ignored, and the question of organ donation after death is almost always left for the family to decide.

The need to obtain family consent is a major barrier to organ procurement [1, 8, 11-14]. Because most organ donors are young people who die unexpectedly, the family is often devastated and in shock. Under these circumstances, clear thinking may be impossible. The need to consider organ donation at such a terrible time places additional stress on the family. Furthermore, family members are often unaware of their loved one's wishes, which makes the question of donation even more difficult for them to answer [9, 13, 15, 16]. The need to ask for permission is also stressful for hospital personnel who fear aggravating the family's pain. Considering this mixture of grief, confusion, and anxiety, it is not surprising that more than 50% of families say no [4]. Indeed, despite suggested techniques designed to increase the number of families who say yes, such as delaying the request for organ donation until after the notification of death [17, 18], a recent study concluded that "the major impediment to procurement was the low rate of family consent" [4].

Toward Greater Individual Control through Mandated Choice

The high rate of family refusal contrasts sharply with public opinion polls that show widespread support for organ donation [9, 15]. This suggests that if the stress accompanying the decision-making process could be avoided, the rate of consent would increase. This goal could be accomplished by eliminating the need for families to consider donation at the emotionally charged time of a relative's death. Instead, adults could decide for themselves at their leisure whether or not they wish to become organ donors upon their deaths. By further ensuring that each person's wishes would be known and honored, favorable public sentiment toward organ donation should translate into increased rates of organ procurement.

This proposal to transfer control away from the family and back to the individual is consistent with the intent of the Uniform Anatomical Gift Act, which states that the wishes of the individual are paramount [5-7]. Furthermore, the Council on Ethical and Judicial Affairs of the American Medical Association recently concluded that "the individual's interest in controlling the disposition of his or her own body and property after death suggests that it is ethically preferable for the individual, rather than the family, to decide to donate organs" [14]. Similar views have been expressed by many philosophers and ethicists [19-23], and several surveys suggest that most of the public agrees [13, 24-26].

How can such an individualistic approach be achieved? Mandated choice has been proposed as an alternative method for obtaining consent, which is designed to accomplish precisely this [1, 5, 8, 10, 13, 14, 22, 27-30]. Under mandated choice, all competent adults would be required to decide and record whether or not they wish to become organ donors upon their deaths. This could be accomplished by asking about organ donation on driver's license applications, tax returns, or official state identification cards. The application or tax return would not be accepted until the question of donation was answered. A change of mind could easily be communicated with a written directive at any time. However, a person's decision would be binding and could not be overridden by the family unless that person had made a provision granting his or her family veto power.

There are several advantages to this approach [1, 8, 13, 14, 22, 27-30]. First, by eliminating the need to obtain family approval, the added stress now experienced by many families and health care workers when confronting the question of organ donation would be removed, and the family consent barrier would fall; in fact, many families might be comforted to know that their relatives' wishes were clear and would be honored. Second, mandated choice would take advantage of favorable public attitudes because all competent adults would decide about organ donation for themselves in a relaxed setting, where thinking is likely to be clear. Third, because all adults would be forced to consider this issue, mandated choice might be the most effective method for increasing public awareness of the great value of organ donation, and this might further stimulate participation. Fourth, mandated choice would eliminate occasional delays resulting from the need to obtain family consent that can jeopardize the quality of organs. Finally, mandated choice would preserve altruism and voluntarism, which are the philosophical foundations of our current system for obtaining consent. Indeed, mandated choice would promote autonomy because, more than any other system, it would ensure that a person's wishes would be honored, whatever they may be.

Making good decisions about complicated issues requires careful consideration; therefore, the question of organ donation should not be sprung upon people at motor vehicle bureaus. This issue should be considered in a setting that provides ample opportunity for reflection and discussion with family and friends, and these deliberations should take place before a decision is made. Therefore, regardless of how preferences are recorded under mandated choice, all adults should be informed long before their decisions are recorded that they will have to decide about organ donation for themselves and why. This information should be coupled with ongoing educational programs that outline the great value of organ donation and dispel fears that inhibit participation [15, 18, 27]. Mandated choice is designed to complement these vital programs, not to replace them.

Several authors have expressed concern that requiring people to decide about organ donation is coercive [4, 31]. However, as Katz [28] has pointed out, "since the gain to the public ... is likely to be substantial ... we as a society can legitimately decide to tolerate the negligible intrusion on an individual's privacy presented ... ." In addition, mandated choice is not coercive with regard to the choices a person makes, and it ensures that those choices will be honored [13, 14]. This assurance also suggests that the fear that mandated choice would generate public resentment and an actual decline in the rate of consent is unlikely to occur. Two recent studies support this conclusion. Among a random sample of 1000 adults in the United States, 65% said they would support mandated choice [8]. In a subsequent national survey, a nearly identical number (63%) said they would sign up to donate their organs under this plan; furthermore, of the 30% who had previously decided to donate, 95% said they would still do so under mandated choice [13]. These and other studies [9] also refute the claim that a widespread fear of being declared dead too soon would greatly inhibit participation [4].

Role of the Family

Mandated choice has been criticized as being insensitive to families [31, 32]. In fact, it is kinder to families than is our present system because it eliminates the need for devastated families to confront the emotionally wrenching issue of organ donation during their most trying moments [1, 8, 13, 14, 29, 33]. The concern that most families would not tolerate being excluded from the final consent process is not well substantiated. As previously noted, surveys have shown that most of the public believes that the individual, rather than the family, is best suited to decide about organ donation and that when advance directives exist, families should not be able to override the wishes of their loved ones [8, 13, 24-26, 29]. These data indicate that most people in the United States believe that with regard to posthumous organ donation, individual autonomy should be respected. Therefore, once family members and medical personnel realize that the best way to protect autonomy, including their own, is to know and honor a person's wishes, they would probably be willing to accept advance directives as binding. It is hoped that self-determination about organ donation would eventually become accepted as routine, just as mandated autopsy is in deaths in which foul play is suspected.

Although mandated choice would give ultimate control regarding organ donation to the individual, this does not mean that the family is unimportant. Family discussions about this sensitive issue have always been of great value, and they always will be. Such discussions may provide useful insights that can help people explore their own feelings as they try to decide whether or not to donate. These exchanges also serve to inform family members of each other's wishes. This knowledge may avoid the distress that might otherwise occur if organs were taken from recently deceased persons who had previously agreed to donate but had not notified their families of their wishes. Furthermore, although most people in the United States seem to believe that adults should decide about organ donation for themselves, a significant minority believe that their families are better suited for this task. Under mandated choice, these people could include a provision granting their families veto power [33]. However, even in these cases, a personal decision should still be made and recorded because this information would be very helpful to families trying to decide. Finally, all families should be informed of any plans for organ retrieval, treated with the utmost respect and sensitivity, and offered as much support as they need to help them deal with the enormous trauma caused by the unexpected loss of a loved one.

Potential Effect on Public Commitment to Organ Donation

Because the purpose of mandated choice is not only to protect individual autonomy but also to increase public commitment to organ donation, it is important to estimate the potential impact that implementing this system would have on the rate of consent before an actual trial is undertaken. As noted above, in a recent Gallup poll of 1002 randomly selected adults in the United States [13], 63% said they would sign up to donate their organs if mandated choice became law. Furthermore, because devoting thought to organ donation correlates with a positive response [13], and because mandated choice forces everyone to consider this issue, this system may actually encourage the 13% who were undecided to say yes. If so, under mandated choice, as much as 75% of the U.S. adult population would become committed potential organ donors.

Conclusions

Our current organ procurement system is inadequate. The need to obtain family consent is at least in part to blame and results in a daily loss of potentially life-saving organs. To rectify this tragic situation, we need to redirect our focus away from the family and back to the individual, the one who is usually best suited to decide the disposition of his or her own body after death. Mandated choice appears to be an acceptable method for achieving this goal and was recently endorsed by the Presumed Consent Subcommittee of the United Network for Organ Sharing [27] and the Council on Ethical and Judicial Affairs of the American Medical Association [14]. Of course, whether or not mandated choice would actually increase public commitment to organ donation remains to be seen. There have been no actual trials of this proposal (Cate F. Personal communication), and the problems with public opinion polls are well known. However, the results of these polls are encouraging enough to recommend that a pilot study of mandated choice be undertaken as soon as possible. With so many lives at stake, we cannot afford to simply continue our current inefficient approach to organ procurement. It is time to try something new.