Some states allow organ procurement from unrepresented decedents. The authors of a recent paper examined some ethical concerns with this controversial but common practice.1
“The issue arose in the context of our work in clinical ethics,” says Joseph A. Raho, PhD, the paper’s lead author and a clinical ethicist at UCLA Health.
The ethical question is whether the organs of unrepresented decedents should be procured for transplantation. “We have no way of knowing what that individual would have wanted regarding organ donation,” Raho observes.
A decision not to retrieve organs means those potential organs will be lost. People who would have benefited from the organ could die as a result. “On the other hand, if the decedent did not leave any wishes regarding donation, and no surrogate with knowledge of the decedent’s values is available to decide, perhaps the organs should not be taken,” Raho offers.
Vigorous debate on both sides of this issue led Raho and colleagues to perform a literature search to see what had been published on the topic. Finding nothing, they decided to write their own paper. “Our hope is that it will initiate sustained collaborative reflection among scholars, policymakers, the public, and, ultimately, clinicians,” Raho says.
Currently, U.S. transplantation policy is based on the donation model. Researchers were surprised to learn the practice of organ retrieval from the unrepresented is legally permissible in 45 states. This meant that the default policy for the unrepresented was in fact “routine retrieval,” unless there were prior evidence that the decedent did not want to donate. “The ethical implications are significant,” Raho notes.
Procuring organs from unrepresented patients without express consent “poses significant ethical concerns, not the least of which is the specter of exploitation for hegemonic gain,” says Leslie M. Whetstine, PhD, professor of philosophy at Walsh University and a bioethicist at Aultman Hospital in Canton, OH.
“Saving a life is such an important ethical concern, and decedents have the potential to save multiple lives through organ recovery,” says Richard J. Howard, MD, PhD, former chief of the division of transplantation and emeritus professor of surgery at the University of Florida. Thus, he suggests every effort should be made to recover all possible organs for transplantation. If a dead person has no obvious next of kin who could authorize organ recovery, Howard outlines the next steps:
- Clinicians spend at least 24 hours searching for such an individual. “We then ask a friend, if there is one, what she thought the individual might have wanted,” Howard explains.
- Clinicians go to a judge, provide this information, and ask for the court’s permission to recover organs. “They almost never deny it,” Howard notes.
- The medical examiner also must be notified. “But in Florida, there have been no denials in at least five years,” Howard reports.
- Donor registries are searched to determine if the decedent already registered. “In Florida, that is sufficient to recover organs,” Howard adds.
Despite the existence of this well-traveled path, there are some ethical issues that come into play:
• The practice raises major issues of justice. If current transplantation policy is based on the donation model, the question is why unrepresented decedents are treated differently. “Unrepresented patients are inherently vulnerable. They come disproportionately from marginalized backgrounds,” Raho says.
Examples include the homeless, the mentally ill, substance abusers, and those estranged from their families. “Is it fair to use unrepresented decedents as sources of organs, when many of them would have been excluded from receiving a transplant, had they needed one, for various reasons?” Raho asks.
People may well be denied transplants for lack of social support, substance dependence, or mental health conditions, or even lack of sufficient means to ensure they will be able to afford post-transplant immunosuppressive medications. “If patients will not be able to care for the organ sufficiently to maximize the opportunity for a successful transplant, then the risk of organ loss is high,” Howard notes.
Two patients are affected adversely: the one who received the transplant but was not able to care for it, and the patient who might have received the organ. “It is frequently a difficult issue of where to draw the line, so to speak,” Howard says. “Every transplant program has its own guidelines.”
• It raises questions about whether a “presumed consent” donation model would be more ethical. “Organ donation is a clear public good. Many adults indicate that they would want to donate,” Raho says. While the vast majority of U.S. adults support organ donation (93%), only about half (54%) are registered donors, according to the results of a recent study.2 If the presumption is that unrepresented decedents would have wanted to donate, perhaps there is a need to rethink the “donation model” in favor of a “presumed consent” model for the entire population, Raho offers. “This is a consideration that merits further discussion.”
Another recent study demonstrated the projected effect of moving toward a presumed consent model.3 This model has been implemented in several countries to address the organ shortage. “An opt-out system that applies to everyone, while not without challenges, offers a far more equitable approach to the matter,” Whetstine says.
- Raho JA, Brown-Saltzman K, Korenman SG, et al. Ethics of organ procurement from the unrepresented patient population. J Med Ethics 2019;45:751-754.
- Glazier A, Mone T. Success of opt-in organ donation policy in the United States. JAMA 2019; Aug 8. doi: 10.1001/jama.2019.9187. [Epub ahead of print].
- DeRoos LJ, Marrero WJ, Tapper EB, et al. Estimated association between organ availability and presumed consent in solid organ transplant. JAMA Netw Open 2019;2:e1912431.