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Children as Patients: Fairness in Organ TransplantationBy Ryan Holmes
The recent court case seeking to make 10-year-old cystic fibrosis sufferer Sarah Murnaghan eligible to receive a donation of adult lungs highlights some of the challenges in developing good policy for the distribution of one of the scarcest resources in health care—organs for transplantation. These policy challenges include the criteria for getting on the recipient list, the separate treatment of children, the way data is used to create and support the criteria, and the role that government and the courts play in making these decisions.
Most of the debate in this case focused on the fairness of the eligibility criteria and whether a particular rule - that patients under the age of 12 and under have lower priority for adult organs than adults and adolescents – was discriminatory. But another important consideration, the ethics of the process itself, did not get the attention it deserves.
The Murnaghan family filed suit against the Secretary of Health and Human Services, Kathleen Sibelius, as though she ought to determine Sarah's fate. But it is not the role of secretary - nor of John Roberts, the president of the United Network for Organ Sharing (UNOS), the independent organization that oversees the procurement, matching and transplant system - to intervene in individual cases. It is not their role to permit one patient or another to move up on the list. Rather, they are charged with ensuring that the system is consistent and fair. UNOS must constantly re-evaluate the process so that it reflects the most recent medical data on patient outcomes. But to request officials, particularly political officials, to interfere in a particular case, subverts the process and the intention of fairness.
The court system can play a role in organ allocation, but it must be a limited one. In the case of Sarah Murnaghan, there was evidence that a sweeping rule might be unfair in her particular situation. However, the courts are ill-equipped to determine whether such rules are inappropriate generally, and even whether they are inappropriate in a certain case. Judges are not medical experts, and do not have the time to weigh all of the medical data. In this case, the judge only had time to hear about the fairness of the "Under 12 Rule" from one expert, despite the varying opinions on the rule among other experts.
Part of what U.S. District court Judge Michael Baylson had to consider was whether to allow UNOS the time to address the general policy issue or whether to grant a Temporary Restraining Order, which would prevent the "Under 12 Rule" from being used in Sarah's particular case. In order to temporarily protect Sarah while the UNOS executive group met to evaluate the rule, Judge Baylson did issue the order. By doing so, the court succeeded in protecting Sarah, but it also infringed upon the authority of UNOS.
The impact of the court intervention and public scrutiny has become even more evident in the past few days. Shortly after she received a donor pair of lungs, the donor lungs failed, necessitating a second transplant. Though the Murnaghan's or their supporters did not bring it to the media's attention again, UNOS did meet to review her case again, per their new review policy. While UNOS could have reconsidered her status, they again allowed Sarah to bypass the "Under 12 Rule". It is not clear that UNOS was swayed by the specter of court appeals, but it seems hard to conclude that their decision to allow Sarah to continue to be listed as an adult was a considered and independent one.
It is important that individuals not be subjected to arbitrary and unfair rules, particularly if it means that they must pay with their lives. But it is also important to allow experts to wade through the relevant information in order to create policies that are fair for all.
Organ allocation is a zero sum situation; deciding to give an organ to one person means someone else will not receive one. The reality is that tens of thousands of patients die waiting for an organ. Because the need is so great and the resources so scarce, we must be careful in how we distribute organs.
While Sarah's case resulted in her receiving a successful lung transplant, making policy decisions based upon a single emergent and publicized case sets a perilous precedent and highlights our need to be vigilant with our policies. The scarcity of organs means we must set policies that are fair and just, well informed and thoughtfully considered. If we allow our sympathy for a particular patient to drive decisions, we risk losing the very fairness we strive to preserve and risk harming as many patients as we help.
Ryan Holmes is the assistant director of health care ethics at the Markkula Center for Applied Ethics at Santa Clara University.