If you’re an avid viewer of cable news, you’ve likely heard the story of Sarah Murnaghan several times over the past few weeks. Murnaghan is a 10-year-old girl from Pennsylvania who was, until today, dying while waiting for a lung transplant due to cystic fibrosis. The girl’s family has been able to do what few other families with dying loved ones are able to: generate enough publicity to potentially save the life of their daughter. Yesterday Murnaghan underwent surgery to receive a lung transplant that she has been waiting for for the past year and a half.
The outcome is heartwarming: Who doesn’t want to see a young girl get a new lease on life? The story, however, raises some serious questions about ethics and best practices in a field that is already fraught with tension over life-and-death decisions.
Organ transplant list rules are complicated, and vary by the type of organ. Generally, every organ transplant system in the country operates as independently as possible, with a panel of doctors assigning each patient a score based on a number of factors, which then determines their ranking on the list. Because the list of those in need of transplants is far longer than the list of potential organs, impartial panels of doctors blindly determine a patient’s position on the list, which can change depending on if their condition changes. Because of the biological differences between pediatric and adult patients, there are different criteria for each group for lung donation nationwide.
There are fewer pediatric organs available. However, every pediatric lung is first offered to a pediatric patient before it is offered to an adult. Adult patients are given a “lung allocation score,” which was developed by the United Network for Organ Sharing (UNOS), whose board decided the criteria used to determine a patient’s position on the lung transplant list. There have been far fewer pediatric lung transplants than adults, therefore the UNOS has assigned different criteria for patients under the age of 12 waiting for a lung transplant as they await further data to accurately determine how to assign a more precise score to children. Computers randomly sort patients, and while pediatric patients’ rank may be disadvantaged on the list according to their score, which is less precise than that of adults, the UNOS favors pediatric patients in other ways in addition to offering pediatric patients first priority for pediatric lungs, such as assigning a priority blind to a patient’s prognosis, a criteria which is factored into the scores of adult patients. Pediatric patients under the age of 12 also have a much wider geographic area from which they can be offered lungs, as compared to adolescent and adult patients, another advantage which is only offered to pediatric patients who may otherwise be disadvantaged.
Murnaghan was one of several children waiting for a lung at the Children’s Hospital of Philadelphia alone (there are over 75,000 active individuals waiting for an organ nationwide). As her condition deteriorated, the family contacted Health and Human Service Secretary Kathleen Sebelius and asked for the rules regarding pediatric organ transplants to be waived for their daughter, which Sebelius declined to do. This week the family was able to force Sebelius to allow their daughter to be considered an adult by approaching a federal judge who ruled that the criteria used separating pediatric and adult patients “discriminates against children and serves no purpose, is arbitrary, capricious and an abuse of discretion.” Because of this federal judge’s ruling, the UNOS was forced to create a false record for Murnaghan, a second computer file which listed her as an adult, thereby artificially raising her “lung allocation score” ensuring a higher placement on the transplant list, which ended up securing her a set of lungs today.
While patients, both pediatric and adult, can petition a blind panel of doctors for an exception to their “lung allocation score,” asking for it to be raised based on extenuating circumstances, this workaround that was forced by the federal ruling on the UNOS is highly irregular and would never normally have been implemented, according to a press liaison I spoke with there yesterday. There are avenues built into the system meant to provide recourse for families who would like to see their loved one placed higher on the list. However, blatantly manipulating the computer system in this manner has never before been offered to a patient. Now that it has, the UNOS has been forced to quickly and without due consideration change the way scores are assigned to pediatric patients so that Murnaghan is not unfairly advantaged. While there isn’t necessarily enough data to accomplish this fairly or accurately, the system has now been totally altered not by a panel of experts, but instead by a federal judge. The UNOS is now forced to quickly implement new criteria for ranking pediatric patients in the coming weeks, despite a lack of necessary data and time to do so effectively.
Many opponents of the Obama administration have called Sebelius a “one-woman death panel,” cheering the federal judge’s ruling that forced Murnaghan be considered an adult. Sebelius expressed her apprehension interfering with the organ donation process, and according to Fox News:
Sebelius said that such decisions should be made by medical experts and noted that there were three other children at Children’s Hospital alone in the same condition.
This is a sentiment that isn’t often uttered on this blog, but in this instance, Sebelius was correct in deciding not to intervene in this case, and in any other case regarding organ donation.
There are few things in this world more tragic than a young person’s death. One cannot help but feel the utmost sympathy for families like the Murnaghans as they watch, helplessly, as their child suffers. There, are, however, rules in place regarding organ donation and transplantation which were made in order to make the process as successful and fair as humanly possible, especially given the heart-wrenching decisions that organ donation panels are faced with every day. These rules were decided on by panels of unbiased experts who tried, to the best of their limited ability, to make organs available fairly to those who need and would benefit from them most.
Should Murnaghan, a pediatric patient with an illness that, even after transplant, can still significantly lower life expectancy, be artificially raised on the list, thereby bumping another patient a slot lower? Who is the patient that would have received the organ yesterday? A mother or father of young children? Perhaps a college student or a retiree supporting their grandchildren? It’s impossible to know, as a feature of the organ transplant lists is their anonymity: patients are assigned numbers in order to decrease the likelihood that one life would be prioritized over another. While the Murnaghan case is tragic, it’s best to keep in mind that wariness of judicial activism is strong in the conservative movement for a reason. By circumventing the rules that thousands of other families abide by, this federal judge has introduced the very real possibility that the carefully crafted rules regarding organ allocation in this country will now be decided not by trained medical professionals operating under a strict series of guidelines, but instead by judges who have no involvement in the complicated medical and ethical field of organ donation. If federal courts are soon deluged by desperate families seeking exceptions to organ transplant rules, this ruling will, and should be, viewed as what it is: a well-intentioned but misguided opening of Pandora’s Box.