Jacob M. Appel, M.D., J.D.
Since Thomas Starzl performed the first successful hepatic transplant in 1967, these transplants have become the intervention of last resort for a wide range of patients whose liver failure would previously have led to certain deaths. Since 1988, when the United Network for Organ Sharing (UNOS) began reporting data, more than 157,000 liver transplants have been performed. Unfortunately, the present rate of approximately 7,800 transplants per year cannot keep up with medical need and a substantial portion of the almost 17,000 patients on the waiting list in the United States will die before an organ becomes available. Some nations have experimented successfully with radical reforms to allocation including “soft opt-out” (Spain) and “hard opt-out” (Austria) systems—both approaches presuming consent, but the former allowing the potential donor’s family to opt out on behalf of their deceased loved one. At present, the political will for similar changes appears limited in the U.S., so a shortage is likely to continue for the foreseeable future.
One of the key principles of the American cadaveric donation system is equity. An organ donation system that favors patients based on wealth or influence, for example, both offends our society’s notions of justice and threatens to reduce the rate of donation. When baseball legend Mickey Mantle received a transplanted liver in 1995, perceptions that he received favorable treatment led to a public outcry. Within any particular geographic region, two factors are generally used to determine who receives livers: 1) medical suitability and 2) a threshold capability to steward the organ. The former calculus proves relatively formulaic—a combination of ABO blood type, body size and MELD (Model for End-Stage Liver Disease) score calculated from common laboratory values. Exceptions are made for certain diseases such as hepatopulmonary syndrome and familial amyloidosis. The goal is to route livers to the sickest patients first.
The psychosocial assessment of potential liver recipients is far less objective. A team of mental health and social work professionals generally assesses the patient’s personal skills and social assets to ensure an ability and willingness to comply with necessary follow-up care. Patients generally require at least one relative or close friend to help manage care, as well as a clear commitment to following a post-transplantation treatment regimen and to avoiding contraindicated behaviors (such as drinking alcohol). It is important to emphasize that this psychosocial recommendation serves as a floor, not a ranking system, and that perceived “social worth” does not play a role in assessment. Only the ability to maintain the organ effectively matters. Of note, efforts to consider social contribution in the allocation of scarce healthcare resources, most notably the actions of the so-called “God Committee” at Seattle’s Swedish Hospital in 1962 in allocating limited dialysis slots, have generally led an intense backlash.
In theory, every potential recipient receives a psychosocial assessment and an equal chance to prove himself fit to care for a liver. In practice, the existing system contains a loophole that favors well-off and well-connected patients. If a patient is denied transplant for psychosocial reasons at one transplant center, that patient can seek reevaluation at a second center and then at a third—in essence, seeking the most lenient evaluator. Upper middle-class patients can afford to travel from hospital to hospital in pursuit of the lowest common denominator. Indigent patients cannot. Often those clinging to the lower rungs of the socioeconomic latter do not even realize that reassessment at a second center is an option.
The solution to this inequity is surprisingly simple. Allow patients to be evaluated for psychosocial fitness at only one transplant center. If a patient finds a way to improve his case—such as recruiting a primary caregiver or maintaining sobriety—that patient should present his enhanced arguments to the same team that evaluated him initially. No formal regulation is required. Transplant centers need only to refuse reevaluations for patients who have been declined elsewhere and instead refer them back to their original assessors. Otherwise, individual physicians end up advocating for the specific patient standing before them at the expense of the integrity of the overall system. The result is that two lives are lost rather than one: Both that of the recipient who cannot care effectively for the organ that he receives because as a result of too lenient assessment and the “invisible victim” who could have survived with that same organ, but who was never given a opportunity to do so.