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Who should decide if Sarah will get lungs? Not politicians or bureaucrats, bioethicist says

A 10-year-old girl, Sarah Murnaghan, is dying of cystic fibrosis at the Children’s Hospital of Philadelphia. The disease is stealing her ability to breathe. Her only hope for life is to get a lung transplant. Yet the national system for distributing lungs, a system authorized by Congress, the United Network for Organ Sharing, has the little girl at the end of the waiting list line.

The reason is her age. Children under 12 are last to be considered for lungs from adult donors. Young children are first in line for lungs donated by kids. But, there are almost no child lung donors. What, if anything, can or should be done to help Sarah?

Sarah’s family has launched a media campaign to get her equal consideration with adults in need of lung transplants. That campaign is having a lot of impact. Tuesday, members of Congress grilled a rather hapless looking Secretary of Health and Human Services, Katherine Sebelius, about why she was not intervening to save Sarah’s life. Rep. Tom Price, R-Ga., told Sebelius that it would “simply take your signature” to help Sarah. Rep. Lou Barletta, R-Pa., demanded she suspend the lung transplant allocation rules until they can be revisited. "I'm begging you," he said.

Is this the way to go? Have Sebelius step in and suspend the rules which would mean Sarah might go to the top rather than the bottom of the list? No. That is not the right way to go.

Washington D.C. is a terrible place to make life and death medical decisions. None of the Congressmen trying to help Sarah know all the facts. Nor does Sebelius. All they see are media stories and press releases from a very desperate family trying to save their dying daughter.

The reason kids get lower priority for lungs is that adult lungs rarely fit so you have to use only a part of one. Using only a lobe from an adult cadaver donor negatively impacts the chance of survival. And different medical problems such as cystic fibrosis create different odds for success depending on age.

The drugs used to keep a lung transplant working create special challenges in children as opposed to adults. Infections are a big problem with transplants and lung transplants to anyone with cystic fibrosis including Sarah are at the high end of risk. In fact, a third of all those who get a lung are dead after three years. None of which means that Sarah should not get a shot at a lung. All of which mean that no politicians or bureaucrat should make the call.

So what should be done?

  • Sebelius has ordered a review of transplant policy, with a particular emphasis on increasing available organs for children. But she should also order a committee of experts in transplantation to quickly review Sarah’s case specifically to see if there is any reason to shift her listing.
  • We should all sign our donor cards to be sure that more organs are available.Some consideration ought to be given to revisiting the lung distribution rules to see if young age really does hurt the chances for success -- and if that's sufficient to keep kids far down the wait list.
  • The option of having someone donate a lobe of their lung to Sarah needs to be aggressively explored.

The urge to do something to help Sarah is understandable and even commendable. But, the rules that exist for saving lives are not random — they are meant to increase the odds of saving the most lives with a very scarce supply of organs.

Children deserve a long, hard look in distributing scarce life-saving resources. That said, when a lot of lives hang in the balance and the facts determining who is most likely to live are complicated, Washington is the last place to turn for answers about who should live when not all can live.

Arthur Caplan, Ph.D., is the head of the Division of Medical Ethics at NYU Langone Medical Center.

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