Sound Medicine editorial
March 1, 2003
[return to Sound Medicine home]

Organ transplantation and medical ethics
Eric M. Meslin, PhD,
Director, Indiana University Center for Bioethics

Recently, Jesica Santillan, a 17-year old girl from Guzman, Mexico, whose parents reportedly smuggled her into the U.S. in order to receive medical care, died at the Duke University Medical Center. Her death brought to a close a tragic story involving the mistaken initial transplant of incompatible organs, a miraculous 11th hour second transplant, followed by news that her brain had been irreparably damaged. The family, desperate to save their daughter's life, has been dealt the blow of raised hope only to see it tragically dashed.

The Santillan story raises important questions, not only about the ethical and policy issues in organ transplantation in this country, but about brain death, end-of-life decision making, medical errors, informed consent and communication.

The most immediate questions stem from the transplantation errors. How is it that the system did not work in this case though it has worked so well for so many people? Only a thorough review of procedures will reveal the error, which no doubt was human in origin. At the same time, we need to put into perspective whether this almost unprecedented error means that the entire system is flawed. Recent research by the Institute of Medicine and other groups has tried to quantify the number of deaths from medical mistakes. But some social policy questions are not resolved by appeal to data alone: how do we prevent medical mistakes that lead to these types of tragedies? How many medical errors are socially acceptable or unavoidable?

Organ procurement and transplantation inevitably raise concerns about the fair distribution of scarce resources. The Santillan case reminds us about how crucial the matching decisions must be, including how recipients are chosen. Some have questioned whether Ms. Santillan, a non-citizen, should have been given priority before U.S. citizens, even though the United Organ Sharing Network (UNOS) does not discriminate against illegal aliens. In the past, U.S. medical centers have been called to task for giving priority to foreign nationals who make the highest bid for rare organs. UNOS has adopted rules limiting each transplant center in the U.S. to performing no more than 5 percent of its procedures on non-citizens each year. At this time, the medical community has accepted these limits. (PDF document)

Jesica's citizenship should not, however, distract us from the more profound question that has always lain at the heart of organ procurement and transplantation policy: what are the criteria for getting on the transplant list and receiving an organ? What principle of justice, of fairness, ought to apply? Should the sickest be given priority over those who would benefit most? Should those waiting longest, or those who have made a social contribution receive priority? Understandably, sickest first remains the principal criterion for allocating organs. But should Ms. Santillan have received a second heart-lung transplant when three other patients who had a greater chance for survival might have benefited from life saving organs?

The ethical issues related to Jesica's transplant are not the end of her story. Once it became clear that she had suffered brain damage, her parents and caregivers faced decisions that thousands encounter every day in this country. How tragic for her family, after witnessing the trauma of the transplant errors to have make an informed decision about whether and when to allow Jesica to be declared brain dead. Discussions about whether to terminate treatment would have focused on whether she lacked brain function only in the neocortex (higher brain) or whether her whole brain (including the brain stem) had ceased to function. Given that Jesica was not competent to decide, and did not have an advance directive, the decision was properly in the hands of her parents.

How this case will effect decisions by those debating whether to sign organ donor cards is uncertain. It would be unfortunate indeed if Jesica's death did not result in a comprehensive review of the procedures, ethical criteria and incentives for transplantation in this country to ensure that this type of error will never happen again; but it would be even more unfortunate if the legacy of Jesica's death indirectly led to the deaths of others waiting for transplants because fewer people chose to donate.

Eric M. Meslin, Ph.D
Director, Indiana University Center for Bioethics