the seen and the unseen

This year we combined the bioethics and economics final exams, and simplified it to one question. This will be a test of your mathematical skills, your reading comprehension, and your ethical intuitions. It's a bit of a trick question, so please read carefully.

First, read the following two quotes.

http://bastiat.org/en/twisatwins.html

In the department of economy, an act, a habit, an institution, a law, gives birth not only to an effect, but to a series of effects. Of these effects, the first only is immediate; it manifests itself simultaneously with its cause – it is seen. The others unfold in succession – they are not seen: it is well for us, if they are foreseen. Between a good and a bad economist this constitutes the whole difference – the one takes account of the visible effect; the other takes account both of the effects which are seen, and also of those which it is necessary to foresee. Now this difference is enormous, for it almost always happens that when the immediate consequence is favourable, the ultimate consequences are fatal,

The advantages which officials advocate are those which are seen. This blinds all eyes.

I must beg you, gentlemen, to pay some little regard to arithmetic, at least

and

http://www.politico.com/story/2013/06/sarah-murnaghan-lung-transplant-ruling-kathleen-sebelius-92299.html

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.

Now, the question:

There are 500 people who need lungs and 20 lung donors. What is the name of the person who was to have received this pair of lungs but who will now die?

Last 5 posts by Clark

Comments

  1. jdgalt says

    There are many laws and court rulings (notably, almost all laws that change the tax code) where "the seen and the unseen" would be a good object lesson.

    But I don't think this is one of them. A child simply has more potential life to lose than the adult whom she probably displaced in the queue.

    I think this class of tragedy is better addressed by campaigning to get a lot more people to sign donor cards (or even by legislating so that organ donation by dead people becomes something you have to "opt out" of, rather than one where you have to "opt in").

  2. David Schwartz says

    It is not necessarily the case that someone will die, nor is it necessarily the case that Sarah will live. The idea, at least in theory, is to unify the standards to maximize the total number of lives saved.

  3. Scott says

    Well, it seems that there is currently a rule that places children under the age of 12 at the bottom of the list. So, if that rule was not in place, where would she be on the list? Does that matter to the question?

  4. Dave says

    I'm not sure what the person's name is, but (in the spirit of mathematical acumen), I'm pretty sure they're older, and would've enjoyed these scarce lungs for fewer years.

  5. Mark says

    The name of the person who was to have received that pair of lungs is:

    The name of the person who will receive that pair of lungs.

    Sticking somebody new on the list does not change the order of the list.

    If Murmaghan survives long enough for the others on the list ahead of her to receive their lungs (or die) then she gets the lungs that would have gone to whoever is below her in the list. In other words, the risk of dying before transplant was increased for those who will be added after her, so the name is not available from the data given.

  6. Luc says

    ChrisTS: The quote is from 1850 France. The strange wording derives from the age, Frenchness, and probably a too-literal translation.

  7. vb_techie says

    The 12 year old cutoff seems to have been pretty arbitrary, since she was big enough (body wise) to accept the transplant at age 10; perhaps that would be a better way to decide on potential recipients. With that being said, I'm not sure I agree w/Dave that an older recipient would have a shorter life span. According to the Cystic Fibrosis Foundation, the 5 year survivability rate is 50% after lung transplants. Not sure what the adult survival rate would be.

  8. James Pollock says

    "Sticking somebody new on the list does not change the order of the list."

    Yes, it does. Being put on the list is not the same thing as being put on the END of the list. The list is scored (both for imminent need for a transplant and for likelihood of successful outcome) so it's possible to enter the list anywhere top to bottom, depending on why you need a transplant and other factors in your medical and personal history. That's part of why people waiting never know when (or if) a transplant will become available.

  9. Xenocles says

    The funny thing in this case is that had it not gone the plaintiff's way then the unseen effect would be the person who received the transplant, not the one who lost out (assuming that the court order has any effect either way). This is, I assume, because of what the media chooses to highlight.

  10. Mark says

    @James Pollock –

    Yeah, I just saw that she was actually placed on the top of the list. They are saying the surgery was a success. My mistake.

    I'm glad she has a better chance now. I also cannot imagine how the others on the list feel since they are now more likely to die.

    Personally, I think these decisions should be left to the doctors who have decided them since 1984. Why the Right would want to give that power to a Presidential appointee is beyond me.

  11. different Jess says

    Well I for one am glad that our current system doesn't allow wealthy industrialists from California to jump to the top of the list in e.g. Tennessee to get a liver only to die 2.5 years later.

    Oh, wait.

  12. James Pollock says

    "The 12 year old cutoff seems to have been pretty arbitrary"
    Not so much arbitrary as self-reinforcing. The reason for the rule is that there's no statistics available for success and failure of the procedure on children who receive adult lungs as transplants… meaning that adults get adult lungs, meaning that there's no science showing successful adult-donor lungs transplanted into children.
    It's not that it's contra-indicated, it's just done so infrequently (or not at all) that there's no evidence it works.
    If we had a situation where there were plenty of adult donors to support all the adults who need them, someone would start a research project to test out how effective adult-donor child-recipient lung transplants are, and the issue would get settled scientifically.

    Really, the solution remains the same: increasing the donor pool, without tipping over into Niven's version, or developing the ability to make transplant organs from scratch. If there's enough to go around, we don't have to ration the supply.

  13. Larry, Esq. says

    Reading this makes me glad I practice something simple like law instead of bioethics. Is there even a developed area of bioethics than explains how to (logically) formulate your opinion on establishing a set of priorities for recipients when we don't even know (among other things) if the adult/child transplants have a better or worse chance of hitting the "50%" mark? In the meantime, I'll just cough feebly and move hurriedly on to something inspiring, like Prenda Law.

  14. Mark says

    @different Jess –
    I assume you mean Steve Jobs? He didn't exactly jump to the top of the list. He just jumped to the shortest list because he could afford a private jet.

    It sucks, yes, but before the NOTA he could have just bought the liver outright. Presumably he would have purchased it closer to home where (judging by the length of transplant lists at the time). He would have endangered even more people than he did in Tennessee.

    I don't often praise Reagan or his Republican Senate, but the NOTA was at least an improvement over existing law.

  15. nlp says

    Well I for one am glad that our current system doesn't allow wealthy industrialists from California to jump to the top of the list in e.g. Tennessee to get a liver only to die 2.5 years later.

    Oh, wait.

    Or famous baseball players who killed their liver with drinking, spent a grand total of one day waiting for a new liver, and died of cancer two months later.

  16. a_random_guy says

    Really, nothing good can come of having judges dictate medical decisions. It doesn't even matter if this particular decision is correct; in fact, that might make matters worse, because then judges will be emboldened to intervene further in areas where they have no training or expertise.

    Many years ago, I remember a not-dissimilar situation in New Hampshire. A photogenic young girl suffered liver failure and required a transplant. Her parents had no insurance. The state said that organ transplants were not covered under the state health program for indigent people; more, that paying the transplant for this one child was too expensive, and would require reducing or eliminating many other health services for the rest of the year, likely causes (indirectly) more deaths than just one.

    This was (and is) the right position for the government to take: step back, see the big picture, and not be swayed by the fact that one particular person is young and photogenic. In any case, State budgets are not bottomless and liver transplants (at least then) were horridly expensive operations with low success rates.

    Of course, the press went mad, the politicians caved, and the state paid for the transplant.

  17. different Jess says

    …he could have just bought the liver outright.

    Good God, that would be so much better than the disaster that has gone on since then. If one wants there to be a shortage of some asset (i.e. in this case you want thousands of hopeful transplant candidates to die), one couldn't design a better method for bringing one about than making it illegal to sell that asset. If Steve Jobs had offered $500,000 for a compatible half-liver, I guarantee you it wouldn't have come from a corpse. There are millions of people who would give up drinking for a few years, and submit to elective surgery, for that amount of money.

    The real problem NOTA was designed to address, and at this it has been a signal success, is that up until that point professional ethicists, HHS busybodies, federal judges, and similar scoundrels hadn't interfered enough with the lives of transplant patients and their physicians.

  18. mud man says

    One unseen victim here is the rule of law … the "blind" scoring procedure has been overruled by an ad-hominum intervention. That isn't the what we call "justice".

  19. David says

    Whether the standards in place now should be changed is a decision that should be left to a panel of impartial medical professionals. I think it would be a disaster if the standard for being positioned on the waiting list regularly became a game of who the judge finds most sympathetic. Or, god forbid, which patient has the best lawyer.

  20. Dave B says

    I hope organ transplants are not handled like spare tires ie any will do in a cinch and time isn't important.
    I believe there are certain parameters that have to fit and you can't take any lung/liver/whatever and stuff them into whoever ranks highest on the list.
    If you are numero uno on the nationwide/statewide list but the organ will be rejected and/or it will take to long to get to you, being numero uno on the list will mean diddly-squat.

  21. Kat says

    I'd also like to add that these parents put in a great deal of effort on their child's behalf–much more than most parents do and are capable of doing. If my daughter were dying, it's probable I wouldn't be able to muster the energy/strength/panache to pull a successful campaign off; yes I would feel desperate, but dealing with illness and the medical system poses its own challenges and hurdles that are hard to overcome. An exception was made for their daughter based on the fact that they were able to generate enough interest in their daughter's case to win it.

    There are a lot of reasons listed above why allowing children to be able to be part of the list is a good idea; they have more life to live, it's basically impossible for 'bad behavior' to have worn their lungs out, etc. etc. If it's the exception that troubles you, then there's a least one reason why this was also a good idea.

  22. James Pollock says

    "There are a lot of reasons listed above why allowing children to be able to be part of the list is a good idea"
    Unless, of course, it turns out that the transplants just don't work, which we don't know because there's no research, and no way to DO the research without burning through a lot of organs which are in extremely short supply as it is.

  23. James Pollock says

    "If one wants there to be a shortage of some asset . . . one couldn't design a better method for bringing one about than making it illegal to sell that asset."

    Ahem. Tell that to the prostitutes and the drug dealers. Apparently, they don't know how scarce they are.

  24. Speed says

    And I'll tell ya, things aren't quite the same
    When I'm rushing on my run
    And I feel just like Jesus' son
    And I guess that I just don't know
    And I guess that I just don't know

    Heroin — Velvet Underground

  25. ZarroTsu says

    I hear obese people have extra large lungs. Perhaps we can exchange them in the black market for several sets of smaller lungs?

  26. says

    What few if any commenters are taking the time to appreciate is that ethics is not straightforward or intuitive. And the core of this case is an issue of Ethics.

    Recall the trolley problem:
    http://en.wikipedia.org/wiki/Trolley_problem

    …wherein it is explained that to kill one person, even to save more than one person, is wrong. Always! Why is that? Ask an ethicist instead of making pronouncements on ethics from ignorance. There is more than one single issue to be considered; it isn't ALL about the child's age, or ALL about the 'innocence' of little children (and their hopefully long futures), it is about a whole series of things that have to be balanced with each other.

    So when Spock said, "The needs of the many outweigh the needs of the few," he may have been right to say it, but not to actually ACT upon that 'idea' (except maybe that suicide is difficult to prove as being anywhere near as unethical as murder).

    And the point of this story is that a judge is interfering in medical and in ethical decisions. Judges don't arbitrate ethics, ethicists have that job.

  27. AlphaCentauri says

    It isn't automatically the case that an organ given to a 10 year old will provide more years of survival than one given to a 40 year old.

    As they say, getting an organ transplant is a life-altering experience. The people that got there through bad behavior often become model citizens. The children who got there through no fault of anyone become teenagers whose rebellious phase consists of refusing to take their medications, causing them to go into rejection. Adults who have families can be extremely motivated to survive until their children are grown; teenagers, not so much.

    It's pretty hard to predict how any individual will behave in the future. I don't even know what I'll be like myself 5 years from now.

  28. Steve Florman says

    Sticking somebody new on the list does not change the order of the list.

    No? Next time you're in line for those hot concert tickets and someone cuts in front of you, I hope you'll remember that.

    There are a number of possible ways to allocate scarce resources (first-come first-served, years to utilize, etc.) and they can all be debated and all have their advocates, but one of the points in this whole issue is that the choices have consequences. In this particular allocation issue, the consequences are almost certainly going to be fatal to someone. Who decides who lives and who dies?

  29. says

    Clark, what we do not know is whether anyone else on the list was a potential match. Organs do not just go to anyone; there needs to be a likelihood of match to reduce the risk of rejection (although she will now be on immunosuppressives for the rest of her life). Further, had the lungs gone to someone else, there is the potential that person a) might not have survived the surgery; or b) might have rejected the lungs. Being put on the list did not put her automatically at the top. It is also well possible she was the only potential match on the list–had she not gotten the lungs, they might have gone to no one.
    The technical answer to your question, of course, is "the donor".

  30. Dave B says

    I guess hormonal changes through puberty can influence a transplants viability too.

    Little Lisa gets a new lung at the age of 8 and takes her meds as her parents tell her. Later some growth spurt sets in which isn't quite supported.
    Now Little Lisa isn't so small anymore, raging hormones and full-on puberty. While the body tries to settle in for adulthood, the body is changing, the metabolism wonky (growth hormones and all) and rebelliousness.
    For whatever reason the transplant can start to fail.

    In contrast a 30year old won't metamorphize for some more years and radical behaviour changes aren't so common if they want to live for some more years.

    So in some ways you could see it as a big potential, LL has her full life ahead of her and so many years, or a risk, going through puberty is challenging for the transplant and the transplantee.

  31. James Pollock says

    "it is explained that to kill one person, even to save more than one person, is wrong. Always!"
    No, it isn't, for a couple of reasons:
    1) Ethics are not absolute
    2) In some formulations, it is not ethically wrong to kill
    3) It is not possible to have perfect knowledge.

  32. C. S. P. Schofield says

    All possible systems will decide that one will live and another will die. That is inescapable. All such decisions will be arguable, and no system will perfectly equitable …. unless you believe that we can get the Archangels to take over the process, and I think their time is spoken for.

    In the past I had considerable difficulty with the 'open market' solution put forward by Libertarians (I've been reading about this on Reason's website), but in this day and age of crowd-sourcing, it is a system that might at least be equally unfair to everybody.

    Leaving the decision to doctors sound fine, until you realize that there are countries (Sweden being an example) where decisions about euthanasia and eugenics have been left to doctors, and where there are more or less permanent, episodic scandals about euthanasia and eugenics.

    I can imagine a situation in which a national bureau headed by Presidential appointment would be the best solution. I can also imagine a great many more situations in which it would be the worst of all probably choices.

    The simply is no good solution to this mess. There is always going to be heartbreak, and perceived unfairness, and acrimony.

  33. KRM says

    What is the name of the person who was to have received this pair of lungs but who will now die?

    Well, it used to be "Lucky," like the rest of us.
    Now it's "Doomed," also like the rest of us.
    If there's a lesson here, it's that luck runs out, eventually.
    It's a beautiful day. Think I'll go outside.

  34. says

    @Tim:

    Recall the trolley problem:

    …wherein it is explained that to kill one person, even to save more than one person, is wrong. Always!

    The Trolley problem does not explain an answer, it merely poses the question and investigates people's ethical intuitions.

    Different people can, and do, have different answers to the Trolley problem.

  35. DeeplyRooted says

    I would want to know whether the publicity surrounding this case has caused one single more person to flag himself or herself as an organ donor, thus increasing the donor pool by one. If so, then it's mathematically a wash, is it not?

    (Of course, that's assuming that donor lungs are fungible – that any pair of lungs can go to anyone on the list. As several previous posters have pointed out, that's not at all the case in real life. In the final analysis, we simply don't know enough. But simplified ethical situations are certainly fun to argue about!)

  36. perlhaqr says

    What is the name of the person who was to have received this pair of lungs but who will now die?

    Sarah Murnaghan!

    She has CF. She's going to die even with the transplant.

    ——

    To be fair, there's a lot of merit to the claim that "12 is an arbitrary number" for something like this. It doesn't really make a lot of sense from a medical standpoint to have a separate "pediatric waiting list" and "adult waiting list". It should just be (IMO) a matter of matching the available organs with the most suitable recipients. (Based on location, tissue compatibility, prognosis, etc.)

  37. MosesZD says

    Ah, the trolley problem. Problem is there are two versions. One where you act on another individual (pushing him in front of the trolley to stop it) and one where you act on an object (a switch).

    When people act on the object, they select (with a very high rate) to divert the trolley to one death. BUT, when they have to push the fat man in front of the trolley… They (with a very high rate) let the five die.

  38. BT says

    Look, I feel for the girl. I do. My best friends' sister needed a liver transplant, and DID die without one. My own very young sister just had a heart transplant. But the fact is that most children DO NOT QUALIFY for those adult parts because they are too large to appropriately function in the body, and are at a higher risk of failing because of it. If they fail in the kid, they can't just be taken out again and put in someone new. You'd lose the kid, the organs, and the person those organs were supposed to go to, all because you're feeling sad and sentimental. Good job, bro.

    It's a shit lot to have to decide this stuff. You have to deny your feelings about 'so-and-so' is a good person, or they're too young to die, or it's really unfair that this happened to them. You can only really consider availability of organs, who's the most sick, and who has the best chance of coming out alive.

    We were lucky that my sister was an exception; even though she would have died in a few months without a new heart, and she was just* over the age threshold, she was 5'6" already; her body was compatible with an adult heart. This girl may not have been ready for adult organs. Even at 12, she may have only qualified for the lungs of another juvenile. Those are in even shorter supply. There is no way those parents could have known how well or badly the other people on that list were doing- that would violate HIPAA guidelines for patient privacy. So they started a heartstrings campaign to get her kids the lungs, even though it may do her more damage than good, and she may die anyways from it… while ruining someone else's chances at life.

  39. perlhaqr says

    Re: The Trolley Problem

    When the problem is stated with the person making the decision being the driver or pilot of the runaway trolley / crashing airplane, the ethical decision actually becomes easy. The pilot is already responsible for the vehicle, so once he becomes aware of the problem, it is his responsibility to attempt to minimize the harm done by his vehicle.

  40. perlhaqr says

    MosesZD: I think the difference there is due to the "track" nature of a trolley. In the "pick a direction" scenario, it is certain that either the one OR the five will die, and there's no other options.

    In the "push someone" scenario, the pushed man is effectively uninvolved (not already being in a trolley path). In that scenario, the obviously ethical solution is to throw yourself in front of the trolley. (Or let the five die.)

  41. Dan Weber says

    If she *just* got put at the end of a new waiting list, I don't see the problem.

    In that case, she would get the lung instead of it being thrown out.

    . . . but is that really the counter-factual? If she was on the child's list, and they tried to match the putative lung against everyone on the adult list and no one matched, would they really just say "eh, toss it in the compost bin"?

    Or would they have started at the top of the children's list and looked down that? So it's some other child she's displacing?

    I simply don't have the facts to come to a good conclusion here. And I thank this thread for making me aware of the facts I don't know.

  42. BT says

    Also, some people are apparently unaware of how the transplant lists work. Let me clarify:

    My sister, for the longest time, was at the top of the list. Then one day, her doctor thought she might* be sick (she wasn't, and I proved it to him; he's just shit at his job). The hospital went to pull her ENTIRELY off the list. You CANNOT be sick and get a transplant. At all. Not a cold, not the flu, not anything, at all, or they remove you. You can get back on the list, but it's a mark against you. As it was, she stayed on the list.

    Then, we discovered that she was not always at the top of the list. Even though she was the sickest patient at that hospital, and the sickest in most of the state, her status constantly fluctuated EVEN for available compatible hearts. Because of her size, she qualified for adult organs, and with a common blood type and generally good compatibility, there were a few out there. But she didn't get them. Why?

    There were other people on the list who may have been MORE compatible than her, or more sick, or even LESS sick but more likely to come through surgery and rejection periods. My sister, on the other hand, woke up during routine surgeries because she's immune to most anesthetics, is allergic to most painkillers, and the stress from the pain might cause the new heart to fail.

    That is how the list works. It isn't a list of outright 'who is the youngest', 'who is the sickest', etc. It's a combination of ever-changing factors: did that otherwise terminal person who is compatible with this available organ get the flu recently? Is the organ the right size, blood type, tissue match, etc? Is this person developing allergies or bad reactions to the drugs they need? Are they committed to living? Because if the docs suspect that a kid is depressed, guess what- no organ. Because the organ is the easy part. The aftercare is what fucks you up. All of these things in combination determine who gets what organs, and you'd better be ready to go head-to-head with people who give substandard care in hospitals to fight for good information on those charts. I can't tell you how many times my sister was nearly denied and even nearly killed because of incompetency of the medical staff… and hers was said to be one of the best hospitals in the STATE.

    I do argue that this kid should have had a competent, medically-literate advocate watching over her like we had to. Our mother had no idea that the docs were messing up so badly. We're damn lucky. But throwing out a petition to demand someone's organs without even knowing whether or not they're compatible, or if she even really qualifies beyond "but she's my little girl!" is not an effective way to address this problem.

  43. Xenocles says

    @Tim-

    Ethics is hardly an exact science. As others have said here, the Trolley Problem has no solution; it is a vehicle for exploring a murky topic. Most people I've seen who label themselves ethicists are just opinionated people equipped with philosophical jargon to back themselves up. As human beings we are all practitioners of applied ethics by default; I have no reason to give the pronouncements of a self-styled ethics expert any more weight than I would to the advice of a cleric from a different creed.

  44. Richard says

    Now, the question:

    There are 500 people who need lungs and 20 lung donors. What is the name of the person who was to have received this pair of lungs but who will now die?

    I find this question in conflict with your premise: that is, that there will be unintended, unforeseen, indirect consequences to this act.

    I would say that taking lungs from someone further down the list and providing them to this 10-year-old is a direct, foreseen consequence of this judge's ruling (assuming, of course, that lungs become available that are HLA compatible with both the girl and another donor on the list).

    This is the question I thought you would ask:
    "How many people will die as an indirect result of the judiciary deciding it has the power to overrule policies set by medical experts?"

    I find that a far more interesting question – this ruling sets a precedent that, at the very least, anyone who would be on the list except for the age restriction, can sue to be placed on the list.

    I have no idea what the answer to that question is, but I'll think on it some more.

    As to your question, from the Politico story, the answer is probably "nobody." From the story: "Without new lungs, she’d probably die within weeks."

    The girl has weeks to live without a transplant, and the chances of a transplant in that time seems slim. So the answer seems to be: she'll probably die anyway, without getting the transplant, and the list will be exactly what it would have been had she never been on it.

  45. M says

    @vb_techie
    The adult survival is about 50% after five years for a lung transplant. Those numbers may be for patients who are alive a year after transplant. So the people sayin this girl now has a chance at a normal life. Rather than dieing unpleasantly at 10 years old now gets to do so at 15. Not that that invalidates the exercise.

  46. Conster says

    @M
    You seem to misunderstand how survival rates work. A 50% survival rate after 5 years doesn't mean she'll die at 15, it means she has a 50% chance to still be alive 5 years from now, and a 50% chance of dying somewhere before then.

  47. says

    This is reminiscent of a case in the UK some 10-12 years ago. A child had brain cancer. She'd already had surgery to remove it, but it returned.

    The local council, responsible for paying the medical bills of those living within its borders, declined to pay for her second operation. Doctors said that it was likely fruitless surgery.

    The father aggressively sought media attention and got it. Lots of public howls about the 'rationing of health care', which it exactly was.

    A private benefactor came up with the money for the surgery, but the girl died within days following it. Medical facts don't always coincide with popular wishes.

  48. WOZ says

    Who did Sarah replace on the "list"? It wasn't my daughter. Because my daughter isn't "sick enough" with Cystic Fibrosis to be on the list. Within the next 2 years that will be the case and hopefully they won't say she's too old. She's 39 and holding. I am wonderfully happy that Sarah got the donated lungs. What we need are more donors so that potential recipients aren't forced to to play the lottery.

  49. DRJlaw says

    Sarah Murnaghan!

    She has CF. She's going to die even with the transplant.

    She's going to die in the sense that any lung transplant patient will die from complications or otherwise, but to my understanding not specifically due to CF. A lung transplant cannot 'cure' CF because all the rest of the body has the gene, but the new lungs do not have the gene and will not somehow incorporate the gene in the future. I haven't read anything to suggest that a lung transplant is less likely to succeed in a CF patient than any other transplantee (e.g., lung cancer patient), but will defer to anyone with actual knowledge.

    ——

    To be fair, there's a lot of merit to the claim that "12 is an arbitrary number" for something like this. It doesn't really make a lot of sense from a medical standpoint to have a separate "pediatric waiting list" and "adult waiting list". It should just be (IMO) a matter of matching the available organs with the most suitable recipients. (Based on location, tissue compatibility, prognosis, etc.)

    This is why the counterargument makes me so angry. People act as if the judge placed her at the top of the adult list. No – the judge removed what he determined to be an arbitrary, age-based exclusion. Her condition placed her near the top of the list based on the same scoring mechanism those over 12 would go through. I've read in a couple of reports that her doctors even factored in the likelihood that her size and any modifications to the lungs would reduce the likelihood of success. If that was true, then her score was a medically-based assessment of need and likelihood of success, not some random judge sticking his uninformed foot in it.

    Nobody on the list has a ethical claim to the status quo. If the ordering of the list would change because a factor was deemed to be irrational or arbitrary (age as opposed to, for example, thoracic cavity size), what is the ethical basis for retaining that factor?

    Ethics is not solely about the result. It is about the how. Here the how appears to have been somewhat flawed.

  50. princessartemis says

    @Dan Weber, from what I've read, children on the pediatric list have no access to the adult list. They are not even considered for any adult lung that comes down the line. So, it appears that with the lists separate, if a lung came down which was a horrible match for every adult on the list, it might very well not be used, because the pediatric list is for child donor lungs only.

    I don't know enough about this particular case to know if there is someone or many someones with the wherewithal to make an exception to the 12 year-old cut off without being ordered to by a judge. Would it have made a difference to the question Clark posed if the exception was made by, for example, triage doctors, rather than a judge? The lists would still change. Someone on the list would still get bumped down. Or would it have been posed at all if the decision was made by doctors who are in the business of triage?

  51. James Pollock says

    "The girl has weeks to live without a transplant, and the chances of a transplant in that time seems slim."

    A more exact examination of the odds reveals that she's currently recovering from her transplant operation.

  52. J says

    It's quite funny how many people seem to think a judge overruled a medical decision. The 12 year cutline is a law is it not? Who makes laws? Politicians, not doctors. Politicians arbitrarily decided that people under the age of 12 do not go onto the list of adults, even if they could support the organ. A judge now ruled that this girl under the age of 12 should go onto that list. This means the judge put the decision back into the doctors hands, not that he took the decision from the doctors hands. He did not rule that she gets an organ, he ruled that she has to become one of the people considered for an organ. Doctors would have considered her in the first place if some law hadn't prohibited them from doing so. And if she was unfit for an organ, she still wouldn't get one.

    Is this unfair to the people already on the list? Not any more or less than the whole concept is: the people with greatest need and chances of survival get the organ. If she doesn't have great need and chances of survival, she won't get an organ someone else needs more. This only stops someone who needs it less than her from getting it, which by the concept of the list, he shouldn't. How can so many interpret this as injustice or wrong? What's wrong is to tell doctors they don't get to decide what organs they are allowed to put in children under 12 years, even if they have better chances of survival and more dire need.

  53. PLW says

    I would be willing to bet at least 100 new people added their names in the donor registry in response to all press that this story has gotten. How many people does that save?

  54. James Pollock says

    "I would be willing to bet at least 100 new people added their names in the donor registry in response to all press that this story has gotten. How many people does that save"
    None, if the next of kin don't ALSO follow through when the time comes.

  55. PLW says

    Obviously putting your name on the list doesn't guarantee saving a life. You have to die in the right circumstances, with a matching candidate on the list, and your family has to follow through. I'm talking about probabilities. Isn't that all we have? There is no guarantee that the lung that apparently saved this little girl would have actually saved anyone else. They could have died in surgery.

  56. Mark says

    @J – No. The 12 year cut line is not a law.

    It was created by the Organ Procurement and Transplant Network under the direction of the United Network for Organ Sharing.

    The members of UNOS/OPTN who make donor/transplant rules (again, not laws) are made up of procurement organizations, doctors, scientist, donors, and transplant recipients.

    The judge did, beyond any doubt, overturn a medical decision.

  57. MZ says

    @Mark

    Well, UNOS was formed by an Act of Congress in 1984 (http://www.law.cornell.edu/uscode/text/42/274) and, since the same of organs is illegal, is basically the only group that gets to make such decisions in the US. Interestingly, that Act specifically requires UNOS to work to increase transplants for children.

    Certainly, the group is governed by doctors and scientists, as it should be, but I would say that a major rule enacted by a private organization created by Congress, supervised by the Secretary of HHS, and granted a legal monopoly over a life-critical service is, for all intents and purposes, a de facto law.

    Not everything organizes itself so neatly into "medical decisions" and "political decisions," as debates over, say, abortion and stem cell research make clear.

  58. Ann says

    This girl has CF. Does a new lung "cure" CF? It's a genetic disorder, so I'm guessing the answer is no–the disease will continue and ultimately damage the new lung. I may be wrong, of course, as transplants can have helpful chimeric effects (like graft-versus-tumor). The point is, if her CF isn't cured, then a new lung is just buying her time, not (probably) a full life. Last time I checked, the oldest person with CF was about 40. Most CF patients die by their mid-20s or so. And this girl's sick enough to require a new lung in childhood to boot, so…what exactly is her future here?

  59. Tim! says

    @MosesZD, perlhaqr: It seems to me that the most significant difference between the switch scenario and the fat man scenario is the probability of effectiveness. Throwing the switch is highly likely to divert the trolley. Putting even a 500lb obstacle in front of a 15,000lb trolley is unlikely to do much of anything except murder the obstacle. And good luck moving the 500lb man! Introducing a previously "uninvolved" actor has very little to do with the decision to my mind.

  60. Michael K. says

    The idea, at least in theory, is to unify the standards to maximize the total number of lives saved.

    Actually, it seems that the idea may be to maximize the total amount of life saved, not the number of lives. Saving an otherwise healthy 12-year-old gets you more ROI than saving a diabetic 60-year-old, for example.

  61. Geoff says

    @perlhaqr, Tim!: It seems to me that you're trying to Kobayashi Maru the whole thing, "solving" the problem in a convenient way, whilst altogether missing the point. For the purposes of the problem, using the fat man to stop the Trolley is guaranteed to save the lives of the 5 aboard the trolley. Arguing over the probability of the fat man stopping the trolley, or suggesting a 3rd solution (throwing yourself in front of the train), is just a dodge.

  62. DRJlaw says

    @Mark,

    The judge did, beyond any doubt, overturn a medical decision.

    Nothing about the term "medical decision" insulates that decision the potential to be arbitrary or capricious.

    "CBS News spoke to a leading specialist who said these rules may be out of date and that there is no medical reason why a child cannot receive an adult lung if it is the right blood type and size, CBS News medical correspondent Dr. Jon LaPook reported Wednesday."

    -Medical evaluation of a medical decision [albeit secondhand, rather than quoting a named specialist].

  63. Mark says

    @MZ
    I was responding to J's comment that the organ transplant rules are, in fact, laws created by politicians which is not the case.

    The point is that the rules governing transplant are based on medical, scientific, and donor decided criteria. Those criteria are overseen by doctors, scientists, donors, and recipients. They are then implement by doctors and patients together. The judge, in this case, overturned the doctors, scientists, donors, and recipients who have created the current set of rules.

    The only government actor or politician that may easily be seen in this case is the judge who overturned those doctors, scientists, donors, and recipients who made the rules.

    As a registered organ donor, this infuriates me. A judge has decided that they know the best use for a donated organ. Instead of giving the organ to the recipient current medical knowledge states is the best candidate, they have rolled the dice on an unknown. I hope the judge got lucky and guessed correctly, I really do.

  64. Vicki says

    It may not matter what the next of kin say. As of a couple of years ago, a person's decision to volunteer as an organ donor stands unless s/he retracts it, whether or not the next of kin agree, or can be identified and reached in time. (I suspect part of why that was changed was to deal with "we would have said okay, if you'd been able to reach us." And with the would-be donor who wasn't sure which second or third cousin is their next of kin, and didn't leave the contact information for any of them somewhere obvious.)

  65. Mark says

    @DRJlaw

    Agreed.

    I just think a medical decision is more likely to be correct on a medical matter than a court order is.

    "CBS News spoke to a leading specialist who said these rules may be out of date and that there is no medical reason why a child cannot receive an adult lung if it is the right blood type and size, CBS News medical correspondent Dr. Jon LaPook reported Wednesday."

    But that is not really the issue is it? There is no medical reason why a smoker who has promised to commit suicide in two days cannot receive an adult lung either. The problem comes about on the outcomes for the candidates after transplant. My fictional depressed smoker is definitely a bad candidate as their outcome is poor compared to most recipients. Sarah Murnaghan *might* have a good outcome relative to the person who will no longer receive a lung before dying, she might not.

    Even if she does, it will be a long time before we can possibly know if adult lung transplants to children *generally* result in outcomes as good or better than adult lung transplants to adults.

  66. George William Herbert says

    Two comments.

    One, it was not purely a medical decision, as the framework in which the decision process operates was created Congress and populated by medical, ethics, and patient representatives. It's already inherently multifaceted and political (in the sense of being managed by a politically decided structure, not in the sense of partisan). If Congress had to get involved, then the Courts would seem not unreasonable as another aspect (though there are other areas such as treaty ratification and senatorial advice and consent on various appointments that the Courts would seem to have less influence over).

    Two, it's not a 1:1 substitution for another person. We have a pool of say 200 patients that is increased to 201 patients. It's not a straight list, because particular organs must meet medical criteria for specific patients (blood and tissue types, size, etc). It's entirely possible that no person will die as a result of this, that the next most eligible person for those particular donor lungs isn't unhealthy enough to die before receiving another organ donation, and the next compatible person behind him healthy enough to last… Alternately, the next compatible person died the day after the girl got those particular lungs. We cannot really know (though some doctors might).

    The question is posed in a "organ donations are fungible" sense, which I believe is not medically true. It's also not clear it's ethically or legally true, though cases can be made.

    I believe that the many doctors now pointing out that the old rules were somewhat arbitrary (age limits rather than size) and not well supported by medical fact calls into question the ethical and legal basis for the question as posed as well.

    This is a good question to be asking. But more complicated than the reducto level used here.

  67. That Anonymous Coward says

    Would an interesting follow up question be:
    Of those people jumping up and down demanding change for this little girl, how many actually filled out organ donor paperwork themselves?

    While the system might be right or wrong, I am not in a position to judge. I don't have all of the information needed to make an informed decision. Does the system need an overhaul, I don't know. I am not aware of how often they revisit the guidelines used.

    What I am aware of is the tendency of people to scream their outrage over something, but do nothing to change it.
    Picture an orange peel on the ground next to a trash can.
    Now picture all of the people standing around talking about how whoever did that should be punished, and how horrible they are.
    Now ponder how long until you see 1 person actually pick the peel up and throw it out.
    The problem has a clear solution, but rare is the person who just moves into the solution.

  68. Mark says

    Just to add two pieces of information for clarity.

    1) The transplant which Sarah Murnaghan received – according to her doctors – had to be resized to fit inside her.
    2) Children under 12 were on the list before this ruling. Before the ruling, being under 12 meant you were automatically moved behind any recipient over 12 on the wait list, not that you were ineligible.

    Not trying to make any particular point with this, just saw a few comments where there was uncertainty about those two facts.

  69. Dustin says

    It's unfortunate to see a lot of smart people play games with this situation.

    She's been moved up and will probably get those lungs at some point, instead of someone else. That's just the way it's going to be, whether she's 1st or 21st, and whether this victim is on the list now or not.

    Some defend this because they say this is a better way to do the list, but the fact remains that an emotional and media driven appeal from people with more wherewithal was able to petition the government to get their kid moved higher on the list. We are not equals before the law, and most of us would not be able to get this kind of accomodation.

    This is, in short, a death panel.

  70. James Pollock says

    "She's been moved up and will probably get those lungs at some point, instead of someone else."
    She already got those lungs.

    "the fact remains that an emotional and media driven appeal from people with more wherewithal was able to petition the government to get their kid moved higher on the list."
    Another way of looking at this is that they were able to petition the government to let their child be on the list in the place she should have been in the first place.

    "most of us would not be able to get this kind of accomodation."
    Count your blessings. Most of us don't need it.

  71. perlhaqr says

    Geoff: It seems to me that you're trying to Kobayashi Maru the whole thing, "solving" the problem in a convenient way, whilst altogether missing the point. [S]uggesting a 3rd solution (throwing yourself in front of the train), is just a dodge.

    I hardly think suggesting throwing myself in front of a trolley counts as "convenient". I claimed it was ethical. If I am going to decide to kill someone to save five others, the only person I have the definitive right to kill is myself.

  72. Mike B says

    At the end of the day , there aren't enough organs for everyone who needs one, and it's further complicated by matching of donors.

    I don't know if the current system is practical or just. I have no idea if the medical concerns around children not receiving adult lungs are valid or not, but what is clear here is that the method in which this happened was wholly unacceptable. Instead of either adhering to a system established to be as equitable as possible under very unfair circumstances, or changing a flawed system for a better one based on new evidence, a single exception was made based on nothing but an emotional appeal through the privilege of the media.

    This is close to why I'm not an organ donor myself. My family has very clear instructions on what to do in the event of my actual death, but no pre-filled paperwork, no little heart on my driver's license, nothing to give a doctor or a panel of people I've never met license to play games with my life on the basis that I'm not worth every last effort because parts of me might be useful to someone being characterized as an "adorable little girl" or a "loving father/mother/brother etc."

  73. Brandon says

    I have a better question. Why don't we allow people to be compensated for organ donations, or the promise of future organ donations, and increase the supply of available organs?

  74. mcinsand says

    @jdgalt and others,

    As someone that lost a family member due to a shortage of donated organs, I feel the need to speak out on the subject, most especially since this is also a community of those that understand the law. As we were losing my father, several officials spoke to us about the importance of talking with our family members and telling others to speak with their family members. What they told us was also that donor cards and drivers license checkboxes are legally empty, even if they feel like productive steps. As it was explained, in the US, our bodies become property of our families, and disposition is then their decision to make no matter what wishes we expressed verbally or written in life. Furthermore, making organ cards or checkboxes legally binding still would not solve the critical issue of timing, although they explained that such a legal change would have to reach very deeply into our legal foundations. The time between a person’s passing and finding such a card easily be too long for the organs to remain viable. So, if you want to help others after you go, talk with your family, talk with your family, and then talk some more, just to be sure that they understand what you want to happen.

  75. Sami says

    @Brandon: Because organlegging.

    @OP: Subquestion: What proportion of adult recipients of lung transplants require the procedure as a result of self-inflicted damage (e.g. smoking)?

    Present the moral argument for such cases to be treated with limited resources that could be otherwise supplied to patients who are not responsible for their own illness.

  76. AlphaCentauri says

    @Sami, organs aren't distributed according to how deserving people are based on their past behavior. But since receiving an organ often means the recipient's own semi-functional organ is removed to create room for the transplant, the recipient must be totally committed to following an expensive and time-consuming regimen of medications, doctor visits, and tests. People on the waiting list have to show they can be compliant by remaining off drugs/alcohol, getting tests frequently to determine their position on the waiting list, taking medications to keep them alive while waiting, etc. People with self-destructive habits often self-select themselves off the waiting list, too, because they just aren't willing to comply with instructions. It becomes a medical decision rather than an ethical one — removing lungs, hearts, or livers from people who won't take anti-rejection medicine will kill them sooner than their disease.

  77. alexa-blue says

    FWIW Jesica Santillan getting a second transplant was a way worse use of resources, for those people who think this is a preview of the way ACA is going to politicize all medical decisions (hey, it might, but the transplant list has been weird forever).

  78. Geoff says

    My apologies to the rest of the thread for refusing to let this go…

    @perlhaqr: My point remains that you are providing the ethical solution to a problem other than the one presented. If the formulation of the Trolley Problem were "There is a Trolley, yourself, and a fat man, and your choices are: A. Do nothing, 5 people on the Trolley die! B. Throw the fat man in front of the trolley, killing him, and saving the Trolley passengers! or C. Throw yourself in front of the train, killing yourself, and saving the Trolley passengers!" then your solution is, I agree, the ethical one. But that is not the formulation of the Trolley problem, and as such, your answer is convenient in the sense that it sidesteps the core issue.

    Put another way, under the formulation of the fat man variant Trolley problem, throwing yourself in front of the train simply ups the kill-count to 6. How is that an ethical solution?

  79. SarahW says

    Unseen UNSEENS might include an increased rate of donation, due to publicity, that encourages others to dontate. Perhaps it SAVES the next guy with a better match, or many more in need will have a chance at a successful transplant.

  80. Nate says

    @perhaqr and Geoff: I think your discussion perfectly illustrates two points: 1) Ethics is effing complicated.
    2) When doing thought experiments such as these are we confined by what the instructions tell us we CAN do or by what the instructions tell us we CAN'T do? A problem to illustrate this concept is a team building activity where the team must fit all members onto a phone book. The instructions are literally "figure out how to arrange yourselves such that everyone can stand on the phone book". One option is to get on each others shoulders so that you aren't touching the ground and stand on it. One option is for everyone to have a toe on the phone book, thus be "standing" on it. One option is to tear out pages so everyone is standing on the "phone book". No one said the phone book had to be intact. No one said that "standing" on it meant not touching the ground. But no one said you could do these things either. So are all the options ok?

  81. BT says

    @Vicki

    That might be true in your state, but in mine, my survivors have the say over what happens to my body, not me. Even though I already have funerary paperwork filled out stating what to do with my body afterwards, if I choose organ donation or to donate my cadaver to science, my family can disregard that and do whatever they want. ONLY if I have a will and other documents on file with the court are they forced to deal with my body in the way I desire.

    To everyone else:

    Even if I filled out a donor card, without health insurance to vet the organs, they likely wouldn't try to take them. I have few medical records, thanks to poverty and a country that doesn't give a shit about it's citizens. They can only take clean organs in perfect health, and they have to be able to verify that in a lot of hospitals within an hour of death or so. It's very expensive to remove organs and store them properly. They don't have a few days to run diagnostics and do biopsies. If my heart looks good on the outside, and has a critical point of failure internally, and that gets implanted into someone, both the hospital and patient are fucked.

    Even if I did, I wouldn't rely on a donor card exclusively. See my first point about the families deciding what to do in death. What would be a better idea is to get an easily-visible medical tattoo, with birth date, blood type, allergies, and whether or not you're an organ donor. They take off your shirt first thing at the hospital, and they'll see it. A bracelet can fall off, be forgotten, etc. but a tattoo doesn't go away.

  82. Xenocles says

    @Nate-

    In a real situation, of course, all possible actions could be chosen – with the results you might expect from the situation, too. perlhaqr might be a good substitute for the fat guy, but I know I'm not.

    If you're in a conversation with the person presenting the thought experiment, it's reasonable to ask questions like "What if I push a car onto the track instead?" and get answers like "In this situation, there are no cars close enough for you to move in time." Then again, the purpose of these experiments is to provide an illustrative backdrop for an artificial dilemma, so it really works best if you just play along and give a good explanation for your choice.

  83. AlphaCentauri says

    How about I volunteer to throw myself on the tracks and invite the fat guy to join me?

  84. James Pollock says

    I find that ethical dilemmas can be solved by applying "The Ones Who Walk Away From Omelas".

  85. different Jess says

    Brandon, yours is indeed the better question, but don't expect an answer here. All the self-appointed "ethicists" on this forum are too distracted with baroque justifications for the status quo and fevered movie-plot fantasies to concern themselves with either ethical principles or obvious solutions to what they claim is a problem.

  86. Eric Henson says

    The real question should be–will the number of years lived by (Sarah+[the-adult-who-would-have-otherwise-received-the-lungs) be greater or less than the number of years lived if Sarah had not been moved to the adult list?

    I mean, the goal of the transplant list is to maximize the potential years of life across the population (at least, I think that's the root reason behind all the criteria). So whatever decision maximizes the years of life, is the correct one. If the adult who would have otherwise received the lungs was 70, and therefore had an expected life expectancy of 2 years, and Sarah has a life expectancy of 70 years, then it makes sense to give the lungs to Sarah.

    On the other hand, if Sarah, due to other factors, has a life expectancy of only 20 years, and the other recipient was 30 years old and had a life expectancy of an additional 300 years if they received the lungs before Sarah, then it makes more sense to give the lungs to the adult, as that decision nets the human race an additional 10 years of life.

  87. Steven H. says

    To toss another bit of data into this particular mess, I see in the news that the young lady has just received her SECOND set of lungs, after the first transplant didn't work out.