This post is a part of our Bioethics in the News series. For more information, click here.
By Tom Tomlinson, Ph.D.
Sarah’s Murnaghan’s sad predicament. has been much in the news the last several weeks. Sarah is a 10-year-old girl with advanced cystic fibrosis (CF) who was critically ill in an intensive care unit in Philadelphia. Seeing a double lung transplant as her only hope for survival, her desperate parents made a highly public appeal to Health and Human Services Secretary Kathleen Sebelius and members of Congress to suspend the policies of the Organ Procurement and Transplant Network (OPTN), which don’t permit children younger than 12 to be put on the waiting list for lungs from adult donors.
Expressing sympathy for Sarah and her parents, Secretary Sebelius nevertheless refused to change the rules, leading Eric Golub at The Washington Times to call her a “death panel bureaucrat.” Sarah’s parents then went to a Federal District Court judge, who issued an injunction ordering the OPTN to put Sarah on the adult list, and later another child with CF. In response, OPTN developed an interim policy on June 10, which is set to expire on July 1.
Sarah quickly received a double-lung transplant from an adult donor on June 12. As of this writing, she remains on a ventilator in the intensive care unit at Children’s Hospital in Philadelphia.
Most discussion of this case has focused on the plight of Sarah and her parents, who have been especially adept at using social networks to capture media attention on behalf of their daughter. Related worries have been expressed about having the organ distribution system driven by sympathy for individual patients who manage to capture the public’s heart.
But there is a larger problem in which Sarah’s story is embedded: how to design a fair and effective system for distributing a scarce resource that falls far short of the need. In 2011, 351 patients needing lung transplant died on the waiting list. Until we have the capacity to grow a new set of lungs from our stem cells, not everyone who needs a lung transplant to survive will receive one. In the meantime, how should we decide who goes to the front of the line?
Well, speaking of lines, how about “first come, first served”? We use this method all the time to guard against favoritism. If I want to secure tickets to a very popular play, I get in line, whether at the box office, or on the Web. Whether I get tickets or not will depend on nothing else about me—not how rich or famous or educated or influential I happen to be. Of course we know that in real life I have a better chance of getting tickets if I know the producer. But that observation just emphasizes how much we think real life falls short of the ethical ideal that “first come, first served” exemplifies.
Why not do this with lung transplants? Transplant centers put candidates on the OPTN waiting list, and when a lung becomes available, the person who’s been on the list longest gets first dibs. In fact, this is the system that was used for distributing lungs to both adults and children up to 2005. The reasons for changing it are instructive.
First, time on the waiting list may have little to do with how badly someone needs a transplant, and it turns out this is especially true for patients needing a lung transplant. Mr. Smith at #1 may be healthy enough to wait quite a little longer, while Mr. Jones at #10 will surely die within weeks without the transplant. So is it “fair” to Mr. Jones if we give the transplant to Mr. Smith? We will have considered each of them equally with respect to time on the waiting list. But we’ve not treated them equally with respect to the urgency of their need, because if we did, the transplant would go to Mr. Jones.
OK, then, urgency of need is a very compelling consideration when without the transplant the patient stands at the brink of death. So let’s make that our rule. Transplants will go to the sickest first. Mr. Jones is still on the ventilator in the ICU, and is not expected to survive to leave the hospital without a lung transplant. Mr. Smith is at home with increasing difficulty breathing due to his lung disease, and is clearly on a downhill trajectory. But he is managing to survive out of the hospital. Urgency of need dictates that Mr. Jones should get the next available lung. But because he’s already so sick, Mr. Jones is much less likely than Mr. Smith to survive the transplant procedure and leave the hospital, and if he is discharged, he is also likely to die sooner despite the transplant. So we will have treated our two candidates equally with respect to the urgency of their need, but not with respect to extending their life. We count the shorter time that Mr. Jones is given for more than the time Mr. Smith could have had.
And here’s another complication. Setting concerns for fairness to one side, we should also guard against making people worse off. That’s what happens when those who “need” a transplant are transplanted too early. The transplant procedure itself is a risky business, and life with the transplanted organ can be a precarious affair, with survival complicated by the serious and sometimes lethal side effects of immunosuppressive drugs. More than half of lung transplant patients are dead 5 years later. Many patients with slowly progressing disease will live longer if they wait longer.
Rather than picking just one of these conflicting criteria, and thereby sacrificing the other ethically important factors, a group of lung disease and transplant experts developed the Lung Allocation Score (LAS), which OPTN adopted in 2006. Supported by evidence from OPTN and other sources, they identified a number of clinical measures that predict the length of two kinds of survival: survival without transplant; and survival post-transplant. The LAS is basically the difference between these: (survival post-transplant) – (survival without transplant x 2). The higher the LAS score, the higher the priority to receive a donated lung. This calculation incorporates two ethical criteria at once. First, it gives a higher priority to those with a predicted higher net benefit. And second, because survival without transplant is subtracted twice, it also gives weight to urgency of need.
This system, which is continually being refined as more evidence is accumulated, applies to all recipients 12 years old and above. Because there aren’t very many patients younger than 12, there wasn’t a solid base of evidence on which to extend the LAS scoring to them, and so those patients were prioritized based on waiting list time. Until Sarah Murnaghan, that is, who got put on the adult list with an LAS score. We can hope she does at least as well as adults with similar scores, despite the lack of solid evidence that she will.
To end, let’s bring this back to Sarah and pediatric patients like her. Suppose that we develop the evidence to support extending LAS scoring to younger patients, who will then go on the list alongside adults with equal or higher LAS scores. The fact that she is a child will make no difference. A 5-year predicted net survival for a 10-year-old gets no more weight than a 5-year survival for a 35-year-old. Should it get more weight?
- Adler FR, Aurora P, Barker DH, et al. Lung transplantation for cystic fibrosis. Proceedings of the American Thoracic Society. 2009;6:619-633.
- Alcorn JB. Summary of actions taken at June 10, 2013, OPTN/UNOS Executive Committee Meeting. United Network for Organ Sharing. Updated June 11, 2013. Accessed June 24, 2013. http://optn.transplant.hrsa.gov/ContentDocuments/Policy_Notice_06-2013.pdf
- Associated Press. Sarah Murnaghan: Pennsylvania girl’s double-lung transplant a success, family says. ABC15.com. Updated June 12, 2013. Accessed June 24, 2013. http://www.abc15.com/dpp/news/national/sarah-murnaghan-pennsylvania-girls-double-lung-transplant-a-success-family-says.
- Egan TM, Lotloff RM. Pro/con debate: lung allocation should be based on medical urgency and not on waiting time. Chest. 2005;128(1):407-415. http://journal.publications.chestnet.org/article.aspx?articleid=1083528
- Golub E. Republican judge saves Sarah Murnaghan from death panel bureaucrats. Washington Times Communities. Updated June 5, 2013. Accessed June 24, 2013. http://communities.washingtontimes.com/neighborhood/tygrrrr-express/2013/jun/5/republican-judge-saves-sarah-murnaghan-death-panel/
- Murnaghan v US HHS v Sebelius, US District Court Eastern District of Pennsylvania, Case 2:13-cv-03083-MMB, Doc 5 (2013). Updated June 5, 2013. Accessed June 24, 2013. http://images.politico.com/global/2013/06/05/https___ecfpaeduscourtsgov_cgi-bin_show_temppl_filefile0879472214301256.html.
Tom Tomlinson, Ph.D., is the Director of the Center for Ethics and Humanities in the Life Sciences and a Professor of Philosophy at Michigan State University.
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