Why is everyone so sure they’re right about transplant ethics?

Many of you have written and asked me to comment on this story:

The parents of 10-year-old Sarah Murnaghan have asked a federal judge to order HHS Secretary Kathleen Sebelius to change organ donation rules so that the dying child has a better chance of receiving new lungs, The Philadelphia Inquirer reports.

The heart-wrenching case is receiving a great deal of national attention and some lawmakers have called on Sebelius to intervene. But the HHS secretary says she can’t pick and choose who can receive a transplant, who can have another chance at life and who cannot. She is seeking a review of the national policy on donated lung allocation, but it won’t occur in time to help this child, who has cystic fibrosis.

Lawyers for the Murnaghan family said the transplant policy discriminates against children under 12, who are lower on the priority list to receive adult lungs.

HHS declined to comment to the Inquirer on the lawsuit because it is a “legal matter.”

Transplant policy in the U.S. is made and administered by the Organ Procurement and Transplantation Network working with the United Network for Organ Sharing under contract with HHS. It’s inherently difficult because there aren’t enough organs for everyone who needs them, and people do die waiting.

Yesterday, a federal judge intervened:

A federal judge on Wednesday ordered HHS Secretary Kathleen Sebelius to allow 10-year-old Sarah Murnaghan to be moved to the adult lung transplant list, giving her a better chance of receiving a potentially life-saving transplant.

The quick and unusual ruling, made after a hastily scheduled emergency hearing, follows a campaign by the family and some members of Congress to pressure the Obama administration to change a federal policy that puts children under age 12 at the bottom of the list of those who can receive donated adult lungs.

There’s a reason I’ve been silent about this. It’s because I have no idea what the right thing to do is. If I were this little girl’s parent, mind you, I’d be fighting tooth and nail for her to get new lungs. I’d do exactly what these parents are doing. If I was one of this little girl’s doctors, I’d be doing exactly what they are doing as well.

It’s pretty much everyone else that’s baffling me.

Here’s the thing. There are many people waiting for lungs in Pennsylvania now, and few will get them. With so few lungs available, it’s important to come up with a fair, unbiased system that maximizes the potential to make good use of them while also not favoring anyone unfairly over anyone else. There is just no way that it ends well for everyone. When a lung becomes available, someone is going to get it, and others will not. That means one person gets a chance to live, and the rest likely die. It’s tragic, no matter how the decision is made.

The reason that kids under 12 aren’t on the list is that there’s little known about how adult lungs will work in kids. If a kids’ set of lungs became available (again – tragedy in and of itself), then they’d transplant them. But that is even more rare than a pair of adult lungs becoming available (again – good thing). So an adult, or an adolescent, is prioritized, and kids under 12 have to wait for a pediatric donor.

Is this fair? Is this right? I don’t know. I know that dedicated, compassionate, ethical people set the policy. They’re in UNOS, and they’re not politicians. I know this eats at them every day.

All of the people screaming right now about this make my stomach hurt. They’re all so sure they know what’s right, even though they never heard about any of this before a few days ago. They don’t know the specifics of the case, and they don’t know all of the variables. One of them – and almost no one is saying this – is that if this little girl gets a set of lungs from an adult, then someone else won’t. That someone else may be 14 years old. I don’t know. Do you?

If that 14 year old has a much better shot at surviving, then is this the “right” thing to do? Will you tell the 14 year old and her parents, with the same certitude and vehemence that you’re showing now, that you think it’s right they she doesn’t get a transplant?

I don’t know if the policy is right. I don’t know if it should be changed. I think that qualified, dedicated, and non-biased people should look into that. If it’s wrong, I hope they fix it.

But I have to tell you, I’m more comfortable with the parents, doctors, and UNOS figuring this out than letting the politicians and political activists do it. I’m more comfortable when government doesn’t get involved in individual decisions about care. Used to be, that was a conservative point of view. Because – and you have to own this – whether or not Sebelius chose to put the girl on the list or not, someone is almost positively not going to get a set of lungs. She’d be the death panel if she acted at all. I sympathize with her apparent reluctance not to get involved. I think it shows a lot more humility than everyone who just knows what the right thing to do is.


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