The rules of organ transplant vs. a dying little girl

Was U.S. Health and Human Services Secretary Kathleen Sebelius being rigid and cruel when she refused an exception to the rules so a 10-year-old girl could receive a lung transplant from an adult? The girl, Sarah Murnaghan, was placed on the adult transplant list — she also remains a priority patient on the pediatric transplant list — after a judge ordered the change to be made.

As much as transplants save lives that half a decade ago couldn’t be saved, the world of transplants is also a heartbreaking one, and one that often seems heartless to outsiders. There are never enough organs for all the need, so doctors and medical ethicists lay down rules intended to do the most good with what’s available. People who engage in risky health behaviors such as smoking might be disqualified. And in the case of lung transplants, patients 12 and younger are considered ineligible for adult organs because the transplants are less likely to work for them.

It’s practically inconceivable that society wouldn’t surge forward with all its might to try to save a little girl suffering from cystic fibrosis. But it’s also worth noting that should Sarah receive a lifesaving lung, that also means someone else isn’t receiving one — a high school student, perhaps, or the parent of young children. It’s not that we save an extra life; we save one life over another.

Perhaps the rules need to be reviewed. After all, not all children of a certain age are at the same developmental level, and some might have better chances than others. Is Sarah necessarily so different from a 12-year-old? But we also shouldn’t be encouraging lawsuits by every patient who feels that he or she is the exception to the rules. And it is extremely problematic for judges or agency chiefs to suddenly overrule policies that were set in place based on science and long, difficult conversations among doctors and ethicists.

So I think Sebelius acted appropriately and ethically. Had she said yes to Sarah, a thousand other petitions would have landed on her desk and the entire system would be up for grabs. Even with her place on the adult transplant list, Sarah will have to wait her turn for a suitable donor lung. Until more people sign up as organ donors, what we have left is a system that saves lives but also, too often, dashes hopes.

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