Ethics of judicial intervention in transplant decisions
In a highly publicized case of a 10-year-old child with cystic fibrosis, a federal judge ordered that both the girl and an 11-year old boy with cystic fibrosis be allowed to compete on an equal basis with adults for lungs from adult donors.
Shortly afterward, the executive committee of the Organ Procurement and Transplant Network (OPTN) declined to pursue an emergency change to give the same advantage to all children in need of lungs. Instead, the committee voted to approve a modification to the lung allocation policy, granting pediatric patients the ability to request an exception and be considered in the adult pool.
Stuart C. Sweet, MD, PHD, medical director of the Pediatric Lung Transplant Program at Washington University School of Medicine in St. Louis, MO, says these two important ethical questions arose from this scenario: Is the policy wrong, and if so, should it be changed so that anybody who wants to do what this child asked to do, could? Should the decision-making be taken out of the court’s hands and put in the hands of medical professionals?
The OPTN executive committee decided there were not enough data to show that there is a clear impact to the pediatric population to warrant making a change to the policy. They also decided that the decision-making about whether any given case that challenged the policy should come to the OPTN and be heard by a review board, and not be left for the courts to decide.
"The Court accepted that compromise, and vacated the injunctions once both children had their appeals under the new policy heard and approved by the lung review board. The temporary restraining orders were allowed to expire," Sweet says.
Ethical principle of allocation
Reviewing the fairness of an organ allocation policy through the experience of any individual transplant candidate’s case could lead to an unbalanced emphasis of justice concerns at the expense of utility considerations, says Alexandra K. Glazier, Esq., vice president and general counsel at the New England Organ Bank in Waltham, MA.
This is because utility as an ethical principle of allocation requires system-wide measurement, says Glazier, and the analysis of utility is especially critical in a system faced with a significant organ shortage. "Any child awaiting lung transplantation can request an exception if medically appropriate," she says. The 10-year-old in the reported case was granted an exception and subsequently transplanted twice. It has been reported that both sets of lungs were from adult donors.
Sweet says one reason it’s ethically questionable for the courts to get involved in an individual case is because not every child waiting for a lung transplant has access to resources such as representation by an attorney.
In addition, changing the entire lung allocation policy through an urgently convened review would have confounded the careful construction of allocation policy developed through a publically transparent and deliberative process, argues Glazier.
"The circumvention of organ allocation through judicial appeals creates the opportunity for cases that are emotionally appealing, such as rescuing children, and may undermine the main ethical directive of an equitable allocation system to maximize the public good and achieve justice," says Glazier.
System placed at risk
The message that lawsuits are a mechanism for more favorable organ allocation runs the risk of disrupting a stable system based on public trust. "To overturn a carefully crafted policy based on information that was primarily provided by the plaintiff is problematic," says Sweet. "For the court to do that, when only hearing one side of the equation, places the whole system at risk."
There was no vehicle for medical professionals to hear the case, adds Sweet, and there wasn’t a compelling argument that the population of children in that age group was being placed at risk to warrant wholesale changes to the policy. Since the OPTN had not envisioned this particular scenario coming up when the policy was developed, there was no existing process for a review board to hear the case.
The discussion about pediatric access to lungs has not included consideration of how often transplantable pediatric lungs are rejected by transplant surgeons, notes Glazier, perhaps due to regulatory pressures related to transplant program outcome measures.
"In making this decision, the lungs provided to the child would be taken away from an adult who might not survive to receive the next offer," says Sweet. "It is not a trivial decision for the court to make."
- Alexandra K. Glazier, Esq., Vice President/General Counsel, New England Organ Bank, Waltham, MA. Phone: (617) 244-8000. E-mail: Alexandra_Glazier@neob.org.
- Stuart C. Sweet, MD, PHD, Medical Director, Pediatric Lung Transplant Program, Department of Pediatrics, Washington University School of Medicine, St. Louis, MO. Phone: (314) 454-4131. E-mail: Sweet@kids.wustl.edu.