Lungs for Sarah Murnaghan Raise Ethical Questions

Bioethics-in-the-News-logoThis 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?

References:

tomlinsonTom 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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24 Responses to Lungs for Sarah Murnaghan Raise Ethical Questions

  1. Jim Nelson says:

    Here’s an argument for the the 10 year old. (Owing to Frances Kamm, although my use of it here will miss her nuances). If I’m 10, and miss out on a potentially life prolonging resource because it goes to someone whose need is equally urgent but who is, say 35, then the allocation system has awarded to someone who already has had more of the relevant good than I have had–that is to say, time alive– still more at my expense. That looks to me as though it is making those who are (comparatively) worse off already (having had little of the good in question), yet more badly off to the benefit of those already better off.

    • Tom says:

      First, my apologies for taking so long to respond to eveyone’s comments. I was on a week’s vacation, and when I’m on a “vacation”, I mean VACATION!
      *************************
      Sure enough, Jim. This is one way to look at it. The 35-year-old already had his chance at being 20, but the 10-year-old hasn’t. But on the other hand, some might argue that the value the 35-year-old attaches to his continued survival is of a different nature. He probably has a set of commitments and obligations to others that can’t be fulfilled if he dies, and in a related vein, he has a set of aspirations and projects he hopes to accomplish. In these ways, he may value his life very differently than the way the 10-year-old values hers. Does that make his life MORE valuable? I confess I’m not sure.

  2. dave says:

    This is just sliding down the the slippery slope associated with organ donations.
    Slippery Slope issues:
    1. Public outcry to circumvent criteria (Sarah Murnaghan)
    2. Celebrity non-candidates; Would someone without mickey mantle’s fame have gotten a liver with the same degree of disease and past medical history?
    3. Wealthy vs the Poor: On a list everybody is the same, yet wealthy individuals have the resources to get on multiple lists across the country and have the resources to get to those locations rapidly if an organ becomes available as well as the resources to “live” at multiple locations
    4. directed donor organs; happening but frowned upon.
    5. Organs for pay; happening outside of the US
    6. Organs from convicts; allegedly happening in China and Kosovo

    • Tom says:

      Dave, these are surely among the reasons that Sec. Sebelius resisted changing the rules in the face of the public pressure Sarah’s parents created. We really do need a system that makes the hard decisions about allocation of organs on the basis of transparent criteria applied impartially to all those in need.

      I confess that when Sarah received her first set of lungs so quickly, I had to wonder whether that donation occurred through application of the LAS criteria; or whether it was a directed donation, via the Facebook page, Donate a Lung to Sarah Murnaghan, at https://www.facebook.com/DonateALungToSarahMurnaghan

  3. Amy says:

    It seems comorbidities and social situation should come into play as well, although that would be quite difficult to factor in without making a completely new LAS. Is the 35 year old a smoker or does the 10 year old have parents that smoke? Is the 35 year old a mom of 3 young children, whose job provides her familly with health care insurance, thus making her potential death from not receiving the transplant a hazard to more than herself?

    • Tom says:

      Amy, to see the factors that go into the LAS, go to http://optn.transplant.hrsa.gov/resources/professionalResources.asp?index=88. Co-morbidities other than diabetes aren’t included, although it is my understanding that individual transplant centers may take these into account in deciding who to put on the waiting list. Social factors can clearly be important, especially those that affect the ability to comply with the immunosuppressive regimen. A particular challenge as young transplant recipients enter adolescence, or move away from home out from under the control of their parents.

  4. Michael says:

    I propose yet another ethical dilemma latent in this story: the ethical status of parents that are either homozygous, or heterozygous genotypes for the CFTR gene-abnormality, procreating. (This is not an ad hominem directed solely at Sarah’s parents). Please consider….

    Disregarding CF that arises from accidental gene mutation, the genome responsible for CF is a Mendellian trait. That means that there is a 50% chance of offspring becoming heterozygous carriers of the abnormality (the abnormality is further propagated into the population), and a 25% chance of offspring being homozygous carriers of the abnormality (which will result in morbidity and mortality). Said differently, parents have a 75% chance with each procreation to repeat the CFTR gene-abnormality into the population.

    As it is generational trait, it seems unlikely that parents do not know their familial CFTR status. Presuming that they knew, they rolled the dice. They lost. Was intention present?

    It is peculiar then, that those consciously responsible for the Sarah’s grave prognosis and chance for an unencumbered life, damn a system that was carefully and deliberately created; only to appeal in the media to skew distributive justice in their favor. Rule utilitarianism failed…what about act utilitarianism? What about no rule at all (the major point of this article).

    Should our medicalized society demand (ask, suggest, beg) for a certain promise of primum non-nocere, and require mandatory genetic screening for these types of genetic abnormalities?

    While I certainly understand these parents’ desperation, I am left to ponder if personal choice is a consent to selfishness. The kind of self preservation that is not a virtue.

    Cheers!

    • Dolores L. Christie (Dee) says:

      “Fairness” is, of course, a slippery term. In this case–and in others–emotion trumped dispassionately-conceived criteria, including the probable outcome for a person this young. As a longtime member of various transplant selection committees in Ohio, I have seen sympathetic patients in urgent need turned down because they do not meet criteria. Likewise I have seen emotion turn the tide in favor of some. One, a young adult who had herself refused treatment earlier, was in critical condition and not able to speak for herself. Ah, we should never let the young die! This patient’s next of kin insisted that she be transplanted. The committee, hastily called for an exception, agreed. She died in the OR; and the organ, now in her body, went to waste. While exceptions can be made and criteria can and are tweaked as data improves; emotion and social status are poor criteria for patient selection. However sad this would have been, Sarah should not have been transplanted.

      • Tom says:

        Dee, your example is illuminating. Organ transplants are universally referred to as “life-saving.’ But as your example demonstrates, it’s not uncommon for them to fail, and to actually SHORTEN the life of the recipients, a tragic failure the LAS scoring system was designed to minimize. Organ transplants offer the chance of life– sometimes a very good chance– but never a guarantee.

        We need to keep that fact in mind when reading that Sarah’s transplant surgeries were a “success.” I sincerely hope they will be, but only time will tell.

    • Tom says:

      Michael–
      Of course, I don’t know whether Sarah’s parents had a family history of CF, and of the risk they were taking when Sarah was conceived. Assuming there was such a history, and that they were aware of it, then I suppose they might bear some responsibility for the consequences. But before I drew a stern conclusion about their moral failure, I’d want to know whether there were for them some competing moral considerations at work. For example, CF can be diagnosed in utero, and the affected fetus can then be aborted. But would that be an acceptable alternative for her parents if they held strong anti-abortion views? At the very least, such parents would face a morally difficult decision.

      And even if we think that her parents acted irresponsibly in bringing her into the world, the fact remains that they did. And now we are confronted with a child in a terrible situation, to whom we owe the same concern we’d owe any other child of more “responsible” parents.

  5. From Tom Tomlinson:
    I will respond to comments after July 3.

  6. Lou-Anne Beauregard, MD says:

    I have been involved in the lung donor and heart donor issue for some time. Many years ago, my son’s psychiatrist was denied a heart transplant for amyloidosis at the same center where a month later, a famous person with the same disease got a heart and liver transplant. Six months ago, a patient of mine who had been waiting for a heart-lung transplant, whose lungs were damaged in the aftermath of 9/11, got one because he was imminently dying. The assessment of each potential recipient is done painstakingly and usually according to established guidelines. Lung transplants are hard to come by. A 10 year old with a genetic disease is unlikely to have a normal life expectancy after lung transplant and in many ways, the transplant may delay the inevitable consequences of her illness. Allowing this case to be high profile puts the realities associated with organ transplant in the public eye. They have seen the screening process at work, but will also see the imperfections in transplantation and rejection. Hopefully transparency will ensure that the system is fair. Personally, I think the legal interventions created a social injustice for those as sick as that poor child and equally deserving of those lungs. Was the decision to match HER to the available lungs made as fairly as possible? We will never really know.

    • Tom says:

      Dr. Beauregard, I would also have hoped that the media attention to this case would have raised public awareness of how the organ allocation system works, and the incredibly difficult choices that system has to tackle. But I’ve seen almost nothing in the mass media that explains and justifies the system that Sarah’s parents circumvented- my reason for writing this blog.

  7. Michael says:

    Mirabile dictum.
    So now, whose duty is it to create a national discussion (eg educational campaign, for example) regarding the mechanisms in place and how those mechanisms guide healthcare professionals to a decision?
    I am concerned, after reading the emotional and sentimental pleadings of “everyday-people” who have commented on a wide variety of blog-spaces and coffee-shops alike, that there is a HUGE need to elucidate the facts of transplant priority to the broad public audience. It seems that there is a misunderstanding, or no understanding at all.
    Amongst scholars, we can debate these cases; but unless we can operationalize and explain it to the public at large; transplant physicians, and institutions will continue to bear the emotional and sharp-tongued brunt of misplaced outrage.
    The true loss in this case are three-fold. A single judge muddied the waters of a system that works pretty good, considering that it exists in scarcity, as two other potential recipients and their families sit by waiting and waiting, their opportunity lost.
    I argue for a staunch adherence to rule-utilitarianism.

  8. Julie says:

    I agree that transparency is essential and that if rules and policies are going to be changed to accommodate new situations and the people who are trying to survive, we need to think about these problems before tilting the scales of justice for one person. There have been several cases of unfair organ transplantation practices locally and in the national news, and many of these cases involve changing existing institutional policies and ignoring the OPO guidelines often without sound reasoning or a critical look at “fairness” and how it is understood (or should be understood).

    To make matters worse, some of the more media hungry “experts”, who defend such practices, often make unsupported claims and thoughtless comments that can contribute to public outcry. I find this to be particularly problematic.

    The lesson we should learn from this case is to work to improve the organ procurement system, and how we evaluate our practices and corresponding guidelines, while critically examining what is or is not fair (and to whom). We cannot simply sit idle and wait for these individual, complex situations to arise that call for immediate action, and give us little time for thoughtful deliberation.

    • Tom says:

      Julie, I agree we need to do a better job of helping the public understand how the organ procurement and allocation system works, and to appreciate the incredible ethical and medical challenges it has to meet. To their credit, UNOS and OPTN are incredibly transparent, providing ready access to procurement and allocation policies and data on their web sites. They’ve perhaps been too content to operate in the background, well out of the public eye. Perhaps the glare of media attention this case has created will lead them to develop a more active media campaign.

  9. dave says:

    The organ donation system is unfortunately unrepairable short of a total cease and desist on transplants until the system can be rebooted. It has become a self perpetuating beast that has a lot more worse to get until it gets better. How soon until convicts are evaluated as potential organ donors? In fact, we are all enabling the system by organ donor signoffs on our driver’s licenses and legistation to make it a reverse sign off i.e. one signs to refuse organ donation instead of the other way around.

  10. Marybeth Pompei says:

    Whether it is a federal judge or the HHS Secretary, the problem is the same: the immorality of some person with arbitrary power deciding life or death. This is not new. Throughout history allocation of scarce resources that meant life or death for many were the purview of kings, popes, dictators, and now democracy. The Renaissance and the resulting political and industrial revolutions clearly settled the matter by demonstrating that the opportunities for survival were hugely maximized by a free market for those life-giving resources. Isn’t it time we seriously considered this for organ allocation?

    The least controversial approach would be cadaver organs. Since there is no harm to the donor, and the both the donor’s family and the organ recipient’s benefit immensely from a market exchange, and all parties improve their survivability at the very least. I would argue that the current system, causing the deaths of hundreds of thousands of patients annually due to lack of an organ transplant, is what is immoral.

    • Tom says:

      I guess I’d never thought of a democratic political system to be one that exercised arbitrary power in the manner of a king or dictator. But leaving that aside, I see no reason to think that an organ market would be fairer than the allocation system we have now. Would it be an unregulated, free market? Then organs go to the highest bidders– not necessarily to those in the most urgent need, or those whose lives would be extended the most. I fail to see how that would be fair; and further, will point out that the history of unregulated free markets is not notable for the fairness of its results.

      Does that mean I think there’s no role for markets in organ procurement? That’s a more difficult question. There’s an ongoing debate whether it’s possible to create a modified market or other monetary incentive system that 1) actually leads to more organ donation; 2) does not exploit the poor and vulnerable in the process; and 3) does not obstruct the medically appropriate and fair distribution of organs to those in need.

      • Marybeth Pompei says:

        About 180 years ago, Alexis de Tocqueville witnessed arbitrary power being exercised in the United States and warned at that time that the greatest threat to the United States was the tyranny of the majority, a term he is credited with coining. In 1835, Tocqueville wrote in his book, Democracy of America, “When I see that the right and the means of absolute command are conferred on a people or upon a king, upon an aristocracy or a democracy, a monarchy or a republic, I recognize the germ of tyranny…” Our Founding Fathers created a republic with a strong constitution to limit the power of the majority in which the rights to life, liberty and the pursuit of happiness are not submitted to a vote. However these limits have obviously eroded over the years, placing all of us at risk.

        Applying your (or any number of people’s) view of fairness to someone else’s life or resources, does not strike me as fair at all, or moral. What happened to the Golden Rule – do unto others as you would have others do unto you? When everyone has the same rights, the matter is moral, which is what the free market brings to all of us. A free market does not mean unregulated, only that everyone has an equal opportunity to buy or sell a product or service at an agreed upon price. Regulations governing fraud, misinformation, untended harm to non-participants, etc., all need to be subject to rational rules.

        The highest bidder, as crass as it may sound to many, is the only way that a market can work its magic to increase survival for all. For those who would “like” or “need” an organ and cannot bid high enough, the path is to ask sympathetic people to contribute voluntarily. Crowdfunding is very effective, and has been used for centuries by friends, neighbors and well-wishers to contribute to a worthy cause. Sarah’s parents seemed to be very adept at this type of outreach, and I suspect would not have had any problem attracting funds to bid for available lungs. Why is this method not far more preferable than a judge or bureaucrat making an allocation decision based on their personal view of fairness, personal benefit, or political consequences?
        Medically appropriate? How is substituting a physician for the judge or bureaucrat an improvement? Buyer and seller (family of the recently deceased) have expert advice available on the medical aspects of the organ transaction and are perfectly capable of using this advice. Adding a medical “God Squad” is not an improvement.

  11. dave says:

    We spend too many resources on organ allocation and not enough on regenerative research medicine research which will eventually replace organ donation and make us regret these days of begging and harvesting.

    • Marybeth Pompei says:

      As evidenced from a review of the recent literature on the subject of technologies for organ replacement, Tom, the novel technologies are not expected to be available, if at all, until sometime in the distant future. Xenotransplantation is promising, but currently mired in rejection issues. With the number of patients requiring organs increasing exponentially, without a market based system, rationing of healthcare by political influence is not far removed, and with it come the inherent ethical issues that cannot be solved.

      • Tom says:

        I think you’re responding to Dave’s post, not mine I have no information about how much we’re spending on regenerative medicine.

  12. Michael says:

    We perturb economic theory, when the item for barter is not just an organ, but the “gift of life.” I guess we don’t know how to do that. However, we should beg philosophers to study economics…before their introduction to Kant, Mills, and Rawls. I wish to point out that Economics scholars also believe that their systems are not only defined, but are also well rationalized and fair. Are there separate universal rules? Or, as Ruth Jamison states….”is there is a separate god for children?”

    Here is what Art Caplan said in a recent talk: the wealthy will always get the organ they want, get over it…spend your energy elsewhere… That is economic fairness as MP explains it, above.

    Scarcity is a definition. That definition explains boundary conditions. If those boundary conditions did not exist, then there would be no scarcity. Fairness is not a descriptor in the definition of scarcity. Ethics must become more trans-disciplined in what it accepts as “truth.”

    What we feel in our hearts is different than any reality our desires might create…on the day Sarah was transplanted the first time, there were 1701 people on the lung waiting list. Please do not argue the definition of fair with me….Solomon’s judgment: should we have cut the lungs into 1701 pieces…of course not…they go to the surgical-candidate-immunological-economic described new owner. Determined by the experts in those fields…not some law judge and his “white-horse” definition of equipoise.

    Economics 101. Surgery 101. Immunology 101.

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