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

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

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

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

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

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

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

    Yesterday, a federal judge intervened:

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

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

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

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

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

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

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

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

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

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

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

    @aaronecarroll

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    • The emotional issue is that the 12 year old girl is an identified person, while the person she bumps from the list and condemns to die is an unknown faceless individual. Major cognitive bias problem.

      Your post is spot on.

      • The child is 10 years old, not 12. Apparently, the medical issue is whether or not a child will benefit from a transplant of adult lungs into her body. With no definitive answer, the medical community must choose to use any donor lungs available in the patient most likely to benefit. The issue is medical, not political, and while my heart goes out to the parents, in more broad ranging terms moving this issue into the political realm is a mistake. The next step would be choosing donors depending on who has the most political and economic clout.

        • A correction to my 11:20 post: The next step would be choosing RECIPIENTS depending on who has the most political and economic clout.

          • And of course the best time to be making these kind of decisions is when you’re under a lot of emotional and political pressure.

    • But of course they’re screaming about it because it’s another chance to ignite th “death panel” rhetoric bomb. The case is being cast in right wing world as government refusing to let the girl have the transplant. Saint Sarah was right!

    • From doing a little research the average life expectancy for someone with CF after transplant is 4.5-5.5 years. The range is one day to 15 years; however, I believe most were older so it would be interesting to see what if any underlying conditions she may have. Given the advancements in CF treatment it is a wonder to me why a 12 y/o needs a transplant so soon?

    • The same people who are arguing she should be saved are many of the same people who profess worry about costs. According to the CFF: “In 2009, the median predicted age of survival was in the mid-30s. The median predicted age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2009.”

      This raises the question relative to SHOULD we spend all this money to save CF patient- all of whom will die prematurely? One can’t scream about costs and then argue to spend millions of dollars to save doomed people.

      For the record, I support any and all funding to help people. We have the money to do so; we just allocate it poorly:

      In the United States, wealth is highly concentrated in a relatively few hands. As of 2010, the top 1% of households (the upper class) owned 35.4% of all privately held wealth, and the next 19% (the managerial, professional, and small business stratum) had 53.5%, which means that just 20% of the people owned a remarkable 89%, leaving only 11% of the wealth for the bottom 80% (wage and salary workers). In terms of financial wealth (total net worth minus the value of one’s home), the top 1% of households had an even greater share: 42.1%. Table 2 and Figure 1 present further details, drawn from the careful work of economist Edward N. Wolff at New York University (2012).- DOMNHOFF, UC- Santa Cruz

    • “The reason that kids under 12 aren’t on the list is that there’s little known about how adult lungs will work in kids.”

      It occurs to me that little can be known about how adult lungs will work in kids unless the policy governing the list allows for sufficient number of such transplants to be attempted,

    • Thank you for commenting on this, Aaron. Your perspective is thoughtful and balanced, as always.

    • This was a very nice, thoughtful post, and I wish more commenters on policy in general (organ donation policy in particular) were this thoughtful. I will, however, disagree with what seems to be a main thrust of your argument: “if this girl gets a set of lungs from an adult, someone else won’t.” The way the quoted passage describes the parents’ petition, the policy change would put those under 12 at the Bottom of the list to receive an adult lung transplant. Thus, if this girl received the lung, by virtue of her being at the bottom, everyone else on the list above her would have been deemed to be a bad match for the lung (this is my understanding of the organ matching system from talking to my mom’s kidney transplant doctors; please correct me if I’m wrong). Thus, anyone under 12 would not be taking an organ from anyone over 12.

      I can see a wrinkle to my objection to your statement: “if this little girl gets a set of lungs from an adult, then someone else won’t.” If no one is a good match, I am not sure whether the matching algorithm goes back through the transplant list and allots the organ to the least bad match. If so, then putting more people on list may take away an organ from another. Though, again, I don’t think that is the way the matching system works.

    • This is what the current policy says:

      from: http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_9.pdf

      policy 3.7.11

      Lungs from adult donors will first be offered to candidates age 12 and older, and then to candidates 0 – 11 years old.

      Lungs from adult donors will be allocated locally first, then to candidates in Zone A, then to candidates in Zone B, then to candidates in Zone C, then to candidates in Zone D and finally to candidates in Zone E.

      In each of those six geographic areas, candidates will be grouped so that candidates who have an ABO blood type that is identical to that of the donor are ranked according to applicable allocation priority; the lungs will be allocated in descending order to candidates in that ABO identical type.

      If the lungs are not allocated to candidates in that ABO identical type, they will be allocated in descending order according to applicable allocation priority to the remaining candidates in that geographic area who have a blood type that is compatible (but not identical) with that of the donor.

      In summary, the allocation sequence for adult donor lungs is as follows:

      1. Local ABO identical candidates age 12 and older according to Lung Allocation Score in descending order;
      2. Local ABO compatible candidates age 12 and older according to Lung Allocation Score in descending order;
      3. Local ABO identical Priority 1 candidates 0 – 11 years old according to length of waiting time;
      4. Local ABO compatible Priority 1 candidates 0 – 11 years old according to length of waiting time;
      5. Local ABO identical Priority 2 candidates 0 – 11 years old according to length of waiting time;
      6. Local ABO compatible Priority 2 candidates 0 – 11 years old according to length of waiting time;
      7. ABO identical candidates age 12 and older in Zone A according to Lung Allocation Score in descending order;
      8. ABO compatible candidates age 12 and older in Zone A according to Lung Allocation Score in descending order;
      9. ABO identical Priority 1 candidates 0 – 11 years old in Zone A according to length of waiting time;
      10. ABO compatible Priority 1 candidates 0 – 11 years old in Zone A according to length of waiting time;
      11. ABO identical Priority 2 candidates 0 – 11 years old in Zone A according to length of waiting time;
      12. ABO compatible Priority 2 candidates 0 – 11 years old in Zone A according to length of waiting time;
      and so on until rule 36.

      In this context,
      (1) my earlier question is answered – this scheme allows for children to receive adult lungs, having a higher priority in their own geographic zone than adults of another zone.

      (2) I guess with the Federal Judge’s ruling, Sarah Murnaghan now gets treated like an adult in her zone. If so, she does not pre-empt adults or children in other zones. She pre-empts other children in her zone. Can you confirm this interpretation?

      The net practical effect of the ruling I think depends crucially on the numbers in the waiting list and the number of donors.

      Note on the zones: (described in 3.7.2)

      Five zones will be delineated by concentric circles of 500, 1,000, and 1,500 and 2,500 nautical mile radii with the donor hospital at the center. Zone A will extend to all transplant centers which are within 500 miles from the donor hospital but which are not in the local area of the donor hospital. Zone B will extend to all transplant centers that are at least 500 miles from the donor hospital but not more than 1,000 miles from the donor hospital. Zone C will extend to all transplant centers that are at least 1,000 miles from the donor hospital but not more than 1,500 miles from the donor hospital. Zone D will extend to all transplant centers that are located beyond 1,500 miles from the donor hospital, but not more than 2,500 miles from the donor hospital. Zone E will extend to all transplant centers that are located beyond 2,500 miles from the donor hospital.

    • “But I have to tell you, I’m more comfortable with the parents, doctors, and UNOS figuring this out than letting the politicians and political activists do it.”

      Surely politicians have already figured this out by contracting with UNOS and its partners. I’d be surprised if even the most ardent free marketeer would put organ transplants on the ‘free market’ (or maybe I wouldn’t be surprised…).

    • Judge Rules In Favor of Sarah Murnaghan
      And Javier Acosta
      No one can blame Sarah or Javier’s parents for doing all they can to save their child’s life. They both are dying of cystic fibrosis and doctors tell the family they have only weeks left.
      The tragedy is that this is happening to every family who has a loved one on the organ transplant waiting list. There are not enough organs being donated to go around – not by a long shot. At year end 2012 there were 117,034 patients on the waiting list yet there were only 28,052 transplants coming from 14,013 donors.
      Since OPTN was started in 1984 and UNOS in 1986, policies have been developed by many people in the transplant world, such as doctors, surgeons, nurses, hospital administrators, social workers, psychiatrists, patients, transplant recipients, financial advisors, lawyers, religious leaders, and members of the public. UNOS Policies start in one of the 21 committees (each organ has its own committee). A proposed policy is sent to the 11 regions of UNOS where each is discussed and voted on by members. The public is encouraged to attend and let their concerns be known. Once the 11 region results are collected, the committee proposing a new policy is told of the results of the votes and concerns, if any. Eventually, the policy is sent to the UNOS Board of Directors for their consideration and vote. This is a very extensive and involved process to make sure everyone has a say and all aspects are debated.
      Judicial and political maneuvering and involvement upsets the delicate balance of justice in organ transplant. Each policy tries to balance, as best it can, utility (getting the most out of a scare resource) and justice (fairness in allocation). Now politics has invaded this established policy making process. U.S. District Judge Michael Baylson has twice now changed the lung allocation policy to satisfy the public outcry and lobbying efforts. It is easy to understand Health and Human Services Secretary Kathleen Sabelius hesitancy to over ride such carefully deliberated policies. Does anyone really want her to make individual life and death decisions for an unknown patient? She says medical experts should make those decisions. I couldn’t agree more.

      Allocation policies are based on many factors: blood type, antigen mismatch, body size, sickest or longest on the list (depends on the organ), how sensitized the patient is (antibodies that will attack the new organ), and geographic distance from the donor to the recipient (time counts). UNOS allocation policies are blind to race, color, creed, gender, ethnic origin, economic status, social criteria, educational level, marital status, sexual orientation, employment status or social worth. The only criteria considered are medical. This should be the case with Sarah.

      The reason for separating young people in categories of under and over 12 years has a great deal to do with their body size. Over 12 years of age, youngsters have a growth spurt and their organs become significantly larger that those under 12 years of age. Will a lung from an older person even fit into a 10 year old? If it was made to fit (very difficult), would it work? These and other considerations are what make up the decision making process for UNOS policies. In 2012 ten children under age 11 were transplanted with new lungs while twenty children were donors.

      Do we really want politicians and the courts making medical decision for the transplant hospitals and surgeons? I think if this is allowed to continue this will put the whole transplant system on a very slippery slope into chaos. Do we want politicians intruding into a medical decision? Do we want judges changing medical policies to satisfy a public outcry? Or do we want well thought our decisions based on medical criteria? I certainly don’t want politicians and judges involved.

    • “I don’t know if the policy is right. I don’t know if it should be changed.”

      Aaron, console yourself for there is an adage in law that states: “Hard cases make bad law”.

    • What was the judges reasoning for his order?