The medical potential for cadaveric solid organ donation exists in less than 2% of hospital-based deaths in the United States [4]. Most persons in the transplantation community are painfully aware that even the recovery of every usable organ could not keep pace with the ever-increasing demand. The supply of cadaveric organs has actually increased substantially over time; from 1988 to 1993, the number of cadaveric donors increased from 4083 to 4844, a 19% increase. However, in the same period, the number of waiting-list registrants increased from 16 026 to 33 496, an increase of 109% [5].

Strategies to change the number of potential organs currently include efforts to expand the definition of eligible donors, identify nonhuman sources of organs, and even divide single organs among multiple recipients. Difficult as these new technological solutions to the shortage may be to achieve, many find it more frustrating that a very "low-tech" barrier to organ availability remains unsolved. Despite legislation mandating donation requests (so-called Required Request laws), recent evidence indicates that fully half of potential donations are refused by next of kin when requested in hospital settings [4]. Should we feel that the glass is half full because many families do donate or that the glass is half empty, as many in the transplantation community believe? Is family refusal an unnecessary barrier to cadaveric organ procurement?

The potential to eliminate the family's role in donation is the focus of efforts such as mandated choice for organ donation [6]. Using a system of universal registration, advocates of mandated choice propose to record the wishes of as many persons as possible about donation of their own organs and to retrieve this information in the event of death with donation potential.

Proponents of such efforts put forth two concepts that require examination: 1) Increasing the number of organs procured is currently an important societal need in the United States and 2) forcing persons to declare their wishes about organ donation before death would result in the procurement of more organs by providing previously unknown evidence of donation choices at time of death with which to either persuade or override the wishes of next of kin.

Social Mandate To Increase Donation

In most discussions of the organ shortage, the mandate to increase donation is taken for granted. However, it is not as uniformly accepted in the United States as many in the transplantation community assume. Over the past several years, transplantation has become more common and yet, if anything, more controversial, as a treatment of end-stage organ failure. As potential recipients increase in number and are recruited from older or sicker populations, ethical issues such as cost–benefit and equity of access remain unresolved.

Even among those who believe that the social benefits of transplantation justify the costs, a wide range of cultural and religious beliefs about brain death, whole-body burial, and end-of-life decision making remain. For many families, these beliefs are not part of formal religion; they may be articulated only when the families experience the unusual series of events that compose a donation situation and realize they cannot consent to organ procurement.

Many technical aspects of solid organ procurement have a strong effect on the family and structure of the end of life. The emotional effect of these events differs for each family, and these differences should be fully respected.

Neurologically devastated patients who are potential donors must be given a series of rigorous tests until full brain death has been established. Deterioration to full brain death sometimes takes as long as 48 hours after the family has been told that the patient is devastatingly ill (the only exceptions to full brain death occur in the protocols for non-heart-beating donation). Some families that express initial interest in organ donation cannot endure this wait and request that their relative be extubated before final determination of brain death, thereby making donation impossible. Other families, often the parents of young children, cannot bear to lose the opportunity to hold their child as support is withdrawn and heartbeat and respirations stop, and find that they cannot allow their child to be taken for procurement surgery.

Yet some proponents of cadaveric donation have used tones of zealousness when expressing their commitment to increasing donation. The decision to donate has been described as "generosity" [6] and the "preservation of life" [7], and nondonating families are described as "those who would deny life to another" [8] by choosing "objection and decay" [7], a result of "invalid" or "mistaken beliefs" [9].

Such language sets the stage for the mistrust that many feel about the current transplantation and donation process. For example, to the many persons whose beliefs are not compatible with organ donation for whatever reason, hearing their decision to choose whole-body burial described as "life-saving organs continuously being lost" [10] can be extremely upsetting. To families experiencing the devastating loss of a spouse or child, especially under the shocking and often violent situations typical of brain injury and death, the ability to even hear about a total stranger's need for organ transplantation is, in our opinion, a truly amazing act of altruism.

It is true that for some families, the decision to donate brings a degree of comfort by giving them the power to create a positive medical outcome (albeit for a stranger) in a situation in which they are otherwise helpless. But if families lose their role in the decision, would this positive feeling still occur?

Proponents of mandated choice, however, take the position that persons waiting for transplantation could be the rightful owners of all potential donors' organs "by eliminating the need to obtain family approval" [10]. Although it is claimed that eliminating the family's need to make a decision "leads to kinder treatment than our present system" [10], promotion of mandated choice is clearly based on recipient—not donor—needs, and discussions of hospital staff and donor family issues have been limited.

Mandated Choice Will Increase Donation

The second and major argument is that a more uniform system of mandated choice will basically remove families from any decision-making role, thereby increasing the number of organs donated. This argument is based on the assumption that families do not know their relatives' true views on donation. However, flaws in this argument must be addressed.

First, despite legislation such as the Uniform Anatomical Gift Act, family acceptance of the procurement process has remained vital to a successful system of altruistic organ donation, even when the patient's wishes on donation are known [11, 12]. This is consistent with the substantial amount of research in the area of end-of-life decision making. This research has shown that communication and consensus between caregivers and the family are critical, even in situations in which advance directives exist. Information about patient preference is most persuasive when decisions are being made about treatment of the patient before death, such as pain management and use of life-saving interventions. It is not uniformly accepted by caregivers that the patient's choice should predominate over the family's wishes once the patient has died. Therefore, overriding family wishes may not reduce stress on caregivers but actually aggravate it.

Indeed, mandated choice, if it introduces additional conflict into the already emotionally stressful arena of trauma, brain death acceptance, and organ recovery and allocation, could simply turn public opinion further against transplantation. The unfortunate reality of cadaveric organ donation is that it is the family, not the deceased patient, who comes home from the hospital; talks to their friends, neighbors, and community about their experience at the hospital; and shapes public opinion about organ donation among those they know. Can the transplantation community afford to go against the wishes of a family for its own apparent gain, even if it is legally entitled to?

A second problem in this area is that there is no evidence that lack of knowledge about patient wishes is a primary cause of family refusal, or that information retrieved from a national database would convince a family that they were carrying out their relative's wishes if they were previously unaware of such information. Studies of families who refuse to donate have been limited; we are currently studying 400 families approached for donation. Among families refusing to donate, we have not found that a substantial number refuse solely because they could not verify the deceased person's wishes. Often, in fact, they have no question that their relative's views and values match their own. Regret about not donating appears to be no more frequent than regret about donating.

Arguments for mandated choice assume that the rates of consent for organ donation would be higher among persons when they register than among their family members at the time of death. For example, Spital [13] cites a survey in which 63% of respondents reported that they would donate under mandated choice and compares this to an actual family consent rate of only 50% in another study [4]. However, this is a modest difference, given what we know in behavioral research about the weak link between expressed intentions and actual behavior. Siminoff and colleagues [4] note that this link is likely to be especially weak when "surveys ask respondents to speculate on behavior for which they have no experiential basis." Few of us have lost a member of our family in a situation of brain death; it is fairly safe to say that few of us could accurately predict our behavior in such a situation.

It is more logical to believe that if forced to make a choice, many persons who refuse to donate a relative's organ would also register as a nondonor. Children, who currently supply 27% of donated organs [5], would presumably not register their choices; therefore, as in the current system, their parents' wishes would prevail. Nonregistrants, like nondonors, would tend to be from "hard-to-reach" segments of the population such as lower socioeconomic groups, minorities, and non-English-speaking persons.

The proponents of mandated choice do not even begin to discuss the legal and administrative burden this system would create. The United States has no uniformly successful system of centralized registration of persons, those we do attempt as a society, such as the census, are done for reasons far less controversial than organ donation and still do not achieve anywhere near 100% compliance. Yet it is naively assumed that the United States will, through legislation, fund and create a system in which a hospital emergency department in the middle of the night would be able to identify a patient and retrieve donor status information from a nationally centralized information source. The costs and complexity of such a system would be enormous and must be weighed against the potential social benefit.

There is, in fact, limited information that can be used to test the efficacy of mandated choice. In 18 states, departments of motor vehicles retain data indicating a donation choice of persons registered to drive. In several states, this information is routinely available in situations of organ request [14]. To date, most Organ Procurement Organization personnel use this information to promote donation; that is, it is offered by procurement staff to potential donor families when the family is undecided and the driver is registered as a donor. Under mandated choice, would information on a driver's registration as a nondonor also be honored?

In Virginia and Texas, a partial system of "mandated choice" currently exists: Licensed drivers are required to register their donation decision. In Virginia, three options are available: donor, nondonor, and undecided. However, anecdotal information from organ procurement personnel indicates a paradoxical moral dilemma associated with this system that did not exist when a pro-donor decision was recorded voluntarily. Knowing that this information may exist, Organ Procurement Organization personnel feel that they must retrieve it, make the family aware of it, and honor a recorded nondonor status whether or not the family has already consented to donation.

In the first 6 months of the program, approximately 1 000 000 Virginia drivers were asked to declare a donor preference. Forty-five percent registered as nondonors, 24% were undecided, and only 31% registered as donors (data supplied by the Virginia Department of Motor Vehicles). These data support the hypothesis that many persons who are not opposed to donation still want to leave their family the "right to refusal" and are therefore unwilling to commit to a binding pro-donation decision beforehand. This information also matches what Organ Procurement Organization personnel tell us: Forced choice before death leaves the family with no options for considering the donation in light of the circumstances of death and perhaps agreeing to donate.

Could information such as that obtained through mandated choice be used to override family wishes to a greater extent than we currently do with situations in which we have a donor preference, such as organ donor cards or drivers licenses? Could we use this information to persuade families to change their choices? Or is the best system, as many have suggested, a system of public education supporting family decision and discussion in which families are made aware of donation decisions and reach consensus on them through discussion before critical illness and death?

Discussion of organ donation should certainly be encouraged within families, and persons should be allowed to record a full range of legally binding medical decisions, including the desire to donate organs, in case of devastating injury. The imperative to do this should be to improve the quality of death, for the benefit of both the patient and the family. Forcing people to commit to a specific, isolated end-of-life decision is coercive and shortsighted. It will not win any new converts to organ donation, and it may alienate those who are neutral.

What proponents of mandated choice fail to acknowledge is that under current required request laws, we already mandate that a choice be made about organ donation at death. This is the point at which families have the most information about how the decision will be made a reality. We also offer those who are ready the opportunity to make a choice earlier, through voluntary registration. However, a substantial proportion of our society expresses reluctance to commit to organ donation, both during their own lives and at the time of a relative's death, when the final decision must be made. If the answer to a donation request is no, perhaps we should find out why, rather than mandating more requests.

We do not believe that mandated choice shows a clear promise of radically changing the organ shortage, certainly not enough to justify its moral, societal, and financial costs. Thus, the recommendation to "redirect our focus away from the family and back to the individual" [11] hardly seems persuasive. We remain convinced that understanding the causes of family refusal of cadaveric donation requests offers more legitimate ways to increase donation rates than does ignoring families at their moment of devastating loss.

Dr. Klassen: University of Maryland School of Medicine, 22 South Greene Street, Room N3W143, Baltimore, MD 21201.