The politics of organ transplants

Since we last met, there’s been a number of roller coaster announcements in the story of Sarah Murnaghan, the Pennsylvania 10 year old who recently underwent a double lung transplant operation. Sarah’s mother Janet had become a regular fixture on cable news, captivating a lot of the nation as she challenged the current organ donor transplant rules and issued some controversial statements about the Director of Health and Human Services. Their wait is over… for now.

Sarah Murnaghan of Newtown Square, Pa., underwent more than six hours of surgery to receive two lobe transplants, meaning that a pair of adult lungs was cut down to fit her small size, according to a statement from her family, including parents Janet and Francis Murnaghan.

“We are thrilled to share that Sarah is out of surgery,” the statement read. “Her doctors are very pleased with both her progress during the procedure and her prognosis for recovery.”

That indicates that a giant push by Sarah’s parents, which resulted in a lawsuit and a federal court order, actually worked as they’d hoped: to allow their daughter to receive adult lungs based on the severity of her illness instead of existing rules.

The way this case has been handled all around has left me with some rather disturbing feelings. Right up front, though, I will say that I understand – even if I disagree with – the actions of Mr. and Mrs. Murnaghan. If that were my daughter I’d probably be out there looking to shoot somebody with a donor card if I thought it would save her life. But I’m not Sarah’s father and can manage to look at this from a bit more distant perspective.

The entire issue of arranging for and prioritizing donated organs is probably one of the toughest and most heart-wrenching processes in society. On average, 18 people die every day waiting for a donated organ. Each and every one of them has a unique, yet still similar story, and each is a real life on the line. At some point, decisions had to be made as to where to draw certain lines in terms of the acceptable age of donors, probabilities of survival and a variety of other factors. Perhaps the system has room for improvement, and that’s certainly worth looking at, but taking a campaign for a single individual, no matter how sympathetic, to the public airwaves and into the political arena just seems wrong. Everyone feels sorry for Sarah and wants her to do well, but should she have jumped the line in front of how many other patients because her mother was willing to launch a national campaign on network TV and try to shame a federal official into changing the rules to bolster her chances?

Doug Mataconis seemed to be thinking something along similar lines.

I am certainly not faulting Sarah’s parents for the course of action that they took. Their daughter likely would have died in the very near future if she hadn’t gotten a transplant, and seeking to have the under-12 rule repealed via the Court system was the only real option that they had available to them. Any parent in a similar situation would have done the same thing, and it’s understandable to see why. However, Courts can only deal with cases like this on an individual basis. They generally won’t consider the consequences in the future of upsetting the medical ethics apple cart by ordering that one patient be advanced up the list to those who are already on the list or the ones who don’t get as a high a position on the list as they might have otherwise. The result may be good for one person, but it’s going to work to the disadvantage of others, and it’s likely to make it that much harder to run an organ transplant system that presents painfully difficult ethical issues on a daily basis.

Watching a lot of the coverage of this story coming from medical experts, one has to wonder how “qualified” Sarah was for a spot at the front of the line. In terms of being the most gravely ill and in need of immediate care, she certainly would score highly. (The “scoring” system was developed by the United Network for Organ Sharing –UNOS). But it looks like the decisions on donors also include factors such as the probability that the donation may result in a long term benefit. On average, lung transplant recipients reportedly only have a 50% survival rate after five years if they are otherwise in excellent health. Patients with Cystic Fibrosis. such as Sarah, are apparently predisposed to develop new lung problems in the future. Further, children receiving adult lungs have to have them “trimmed” to fit their chest cavity or have only partial lobes of the donated organ implanted. Is that the most efficient use of the organ? I ask this because the rule about a minimum age for children receiving adult lungs had to have come from somewhere.

I’m sure the system never seems fair to those dealing with it and my heart goes out to them. But it’s just as unfair to the thousands of others facing similarly dire straits. What was the reaction of other parents in similar situations who were perhaps not so media savvy or were not willing to air out their case 24/7 in the cable news wars. Sarah’s family did what they felt they had to do, but I’m not sure that a public campaign to jump the line and the intervention of judges and politicians for a particularly telegenic case is the way to go.