The Chaotic, Political, Ethically Murky Case of the 10-Year-Old Girl Who Needed a New Pair of Lungs

Health and medicine explained.
June 19 2013 4:08 PM

How to Fix the Organ Transplant Shortage

The chaotic, ethically murky case of a 10-year-old girl in need of lungs.

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On Monday, June 10, the executive committee of the OPTN ordered a yearlong review of wait-list guidelines for children in need of lungs. The network declined to suspend the age rule altogether—the physician experts tasked with reviewing the under-12 policy decided that there was no scientific evidence to justify a wholesale emergency change. But in the interim, it established a mechanism for doctors to request case-by-case exceptions for the roughly 30 other children younger than 12 who need lungs.

It was a happy ending for Sarah. Thanks to the judge’s ruling, the girl got a set of adult lungs about 18 months after being placed on the pediatric waiting list.

Sarah’s case is a classic illustration of the “rule of rescue.” Ethicist A.R. Jonsen coined the term to denote the imperative people feel to rescue identifiable individuals facing avoidable death. People may expend heroic efforts that either put others at risk or pose costs to society that could be more efficiently spent to prevent abstract deaths in the larger population. But the “baby in the well” is saved.

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It was Jessica McClure, an 18-month-old girl who fell into a well in Midland, Texas, in 1987, who brought the rule of rescue intro millions of American living rooms. After 58 tense hours, emergency workers hoisted Jessica from the well; today she is a thriving mother of two. But Jessica’s case differed from Sarah’s: There was only one baby in a well. Saving her did not mean that another Jessica, in a well down the block, was left to suffocate.

And so we arrive at the most wrenching question of all: Did anyone die so that Sarah could live? When those adult lungs became available for the little girl, did another person, say a 21-year-old woman with cystic fibrosis, lose her claim on life?  

That's an agonizing question to pose. Yet it's precisely the situation that our current transplant system, based on voluntary donation alone, forces everyone—patients, families, their doctors, politicians, and the HHS secretary—to confront.

When matters of fairness in health care come to the fore, the media reflexively turn to bioethicists. Daniel Wikler, a medical ethics expert at Harvard, took a dim view of special pleading. “If the distribution of organs becomes subject to the success of individual publicity campaigns, with organs going to those who hire the best PR firms and lawyers, who on the waiting list would remain confident that their priority would be decided on the merits?” David Magnus, a bioethicist at Stanford University, stressed how important it is for people who donate to have “faith in the system and that we have a fair system that also does a good job of marshaling and stewarding this incredibly scarce resource.”

Instead of settling for priority ratings and faith in a system that really does try to strike a utilitarian balance, the only real solution lies in increasing the organ supply. Nowhere in the modern medical universe, save for the world of transplantation, does the scarcity of the treatment dictate who will receive it.

In the end, the media attention that swirled around Sarah Murnaghan was eye-catching and effective—the rule of rescue was imposed. But her desperate need for an organ was not an exception. Her drama plays out every day as 18 people who can no longer survive the wait for precious kidneys, livers, hearts, and lungs succumb to the organ shortage.

Even if the rules for allocating lungs are permanently revised by the OPTN next year, the numbers of donated lungs will not likely change, and other unheralded “Sarahs” will perish needlessly.