16 thoughts on “Spreadin’ Love 562”

  1. “A hospital refuses to do a kidney transplant on a girl, because she is cognitively impaired. Shame.”
    I think this ties in to previous discussions of hospital ethics between me and Ragtime. There always is an ethical system in play for major medical care, and a purely secular one (like the utilitarianism on display here) is just as likely to dissatisfy patients as is a religious ethical system.

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  3. I believe Amy is over-reading the “ethical system” here.
    First: This story has all of the hallmarks of not getting the entire story. Parents who were overwhelmed by the decision to not let their daughter have a transplant latching on to one point, and a hospital that cannot respond to the HIPAA. Of course, you can never know for sure, but this looks like a prime target for “get more facts before you jump to a conclusion.”
    Second: This is not a situation such at a Catholic Hospital, where the policy is “we will not abort ectopic pregnancies.” CHOP’s policy is non-discrimination. If this particular doctor violated the policy, then that is wrong, and there should be correction, but this is not a situation where CHOP has a policy stating “We do not give kidney transplants to mentally retarded children.”
    Third: Parents (and spouses and children) make very bad decisions for family members with terminal conditions who cannot make their own medical decisions. They disproportionately choose heroic measures that cost tens of thousands of dollars toe extend life over improving quality of life, and turn the last six weeks of life into six more months of torture to a person who does not know what is happening to them.
    I remember reading Aleskander Hemon’s “The Aquarium” in the New Yorker last June (well, it was probably September because I am behind in my New Yorkers) about his 9-month old daughter with brain cancer. It was written from the parent’s perspective. “We tried this and it didn’t work, and then we tried this and it didn’t work, and then another surgery, and the chemo . . .” The point was supposed to be “look how much we love our daughter and still she died.” All I could think was, “I’m reading about extreme child abuse.”

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  4. I also agree that I do not feel that I have enough information to weigh in on the specific case here. I read the parent’s letter, which isn’t very clear about the medical decision making; I know that transplant decision making is complicated; I did find a med student talking about issues, including the possibility that immunosuppressive drugs might contraindicated with certain types of brain seizures (or with medications taken to control them) as a potential confounding factor (though, we don’t know the details in this medical decision making).
    In counter point to Ragtime’s concern that caretakers take extreme (and potentially life-quality reducing) measures for people under their care who cannot make their own decisions, in fact it’s clear that people make those own decisions for themselves, to, when they are competent to make their own decisions. I don’t think there’s any evidence that parents take more extreme measures for their children than, say, they take for themselves when making end-of-life decisions. People are willing to put up with a lot in order to feel that they are doing something and to have a hope of survival (and, they drastically mis-estimate their own odds of survival).

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  5. Clearly the mother did not present the whole story. I had a relative who was on a transplant triage team at a hospital (He once described his role as “being the one who decides who lives and who dies.”) and so I can see where there is another side.
    That is, the top criterion in transplant triage is whether the person will be able to maintain the organ going forward. If this doctor and the other members of the team (as these decisions are never made in isolation) determined that there would be a low probability that this girl would be able to take the required medications (either because she couldn’t tolerate them or because she was less likely to maintain the schedule) then they very well might refuse to perform the transplant.

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  6. In counter point to Ragtime’s concern that caretakers take extreme . . . it’s clear that people make those own decisions for themselves
    I agree, but don’t see that necessarily as a counterpoint. If I want to destroy my quality of life, to hold out the hope of a prolonged life, then that’s fine. (Well, not really, because of wasting a lot of money, but put that aside.)
    A three year old or a nine month old doesn’t understand “I feel fine today, but I only have six months to live” and she doesn’t understand “I feel like crap today, but it’s going to extend my lifespan for 6 months to 18 months.”
    The child does not have a “hope of survival” if she doesn’t understand what is going on. For her, it is just torture, with all of the countervailing benefits of “hope” and “doing something” going to the parents.

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  8. I suspect there’s no media story because there’s no story. CHOP does not have a policy against transplants for patients with cognitive disabilities (or differences). As Ragtime points out, CHOP can’t explain its decision making process here, because it is prohibited by privacy considerations (including federal laws). There could be an article about the process of transplant decisions in general, but I suspect that would show that many factors go into the decision making process, including touchy ones. I do think CHOP should talk about the case publicly, if the family is willing to wave their privacy rights (and not retreat into “no comments”).
    Although I see your point that very young children may have nothing to gain from painful extended treatment, I see no alternative to having their guardians, caretakers, and family make the decisions about them. As we’ve mentioned in other contexts, though parents do make bad decisions for their children all the time, there’s very little evidence that anyone else can make better decisions.
    Doctors are in a tough spot, though, in both their right and obligation to refuse (or to provide) interventions.

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  9. Although I see your point that very young children may have nothing to gain from painful extended treatment, I see no alternative to having their guardians, caretakers, and family make the decisions about them.
    It’s very sad and emotionally fraught with kids, of course, but you see this all of the time with children who “don’t want to let dad go” or men who aren’t ready to be a widower after the not-quite-fatal heart attack or stroke. Dad is 80 years old, has not retained consciousness for a week, or has only retained consciousness briefly, in a confused state. He is on a ventilator, and can stay on the ventilator for months, but there is no chance at all of reasonable recovery ever. (Or, to placate those still on the delusional Terri Schiavo bandwagon, a 0.1% chance of recovery, ever.)
    What you should do is say, “Look, I’ve been doing this for years, and there’s no realistic hope of any improvement here, and you’re really just prolonging dad’s pain. But hey, if you’re not ready to let go yet, you can keep the ventilator going on your nickel. Just pay $3,000 per day, in advance, and we’ll keep dad pumping.”
    For the CHOP story here, it looks like there’s two possibilities — either we are getting the whole story from the one side we are hearing, in which case the doctor should apologize and get on with the surgery, per CHOP’s policies, or else there’s a big piece missing, the girl is really a bad candidate for transplant, in which case the doctor should say, “We’ll operate. All you need to do is show up with the donor kidney and pay in advance for the surgery, and we’ll do the rest.”

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  11. The article to which Lisa V linked really vindicates Amy P. It seems that the hospital has made a totally defensible ethical judgment. Unfortunately, (i) there isn’t any neutral and objective set of ethical principles to guide these judgements and (ii) when a hospital’s ethics operate to the detriment of particular individuals, those individuals aren’t happier because they are told “it’s a considered bioethical judgment endorsed by the experts on the committee” rather than “it’s the will of God as determined by the bishops.”
    I personally would add that just because people have graduate degrees in bioethics doesn’t mean that their judgments are more reliable than those of, say, evangelical pastors or even Catholic bishops, but that’s just my own anti-pointyhead prejudice and distaste for elite institutions.

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  12. Ragtime said:
    “First: This story has all of the hallmarks of not getting the entire story. Parents who were overwhelmed by the decision to not let their daughter have a transplant latching on to one point, and a hospital that cannot respond to the HIPAA.”
    For instance, if she also needed an additional organ that her family would be unable to provide.
    (I see that Lisa V’s link to a Lisa Belkin piece says that the little girl’s condition often involves heart problems. Belkin screws up in her post because she isn’t taking enough account of the fact that the family is providing the kidney.)
    “Second: This is not a situation such at a Catholic Hospital, where the policy is “we will not abort ectopic pregnancies.””
    Ragtime, that is not Catholic teaching. Here’s a link:
    http://www.catholiceducation.org/articles/medical_ethics/me0140.htm
    If you’re going to talk about this stuff, please familiarize yourself with your opposition’s actual position.
    Jay said:
    “If this doctor and the other members of the team (as these decisions are never made in isolation) determined that there would be a low probability that this girl would be able to take the required medications (either because she couldn’t tolerate them or because she was less likely to maintain the schedule).”
    “Less likely to maintain the schedule” may in fact be closely related to her lower cognitive functioning. They may not believe that with her level of mental functioning, that she will stay on track with her medication in adolescence and adulthood.
    y81 said:
    “I personally would add that just because people have graduate degrees in bioethics doesn’t mean that their judgments are more reliable than those of, say, evangelical pastors or even Catholic bishops, but that’s just my own anti-pointyhead prejudice and distaste for elite institutions.”
    It is far too often the case (but perfectly natural) that bioethicists are guns for hire. If you were a hired bioethicist for a company that does embryonic stem cell research or human cloning work and you pointed out that that was unethical, how long would you last?

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  13. Here’s another important issue that we haven’t discussed: according to Belkin, Wolf-Hirschhorn syndrome leads to death by at least early adulthood. Also, there’s something in the original post about a need for a repeat transplant in 12 years (not sure if that’s true just in this case or generally with kidney transplants).
    There may have been discomfort on the part of the ethics team with regard to putting the live donor (or a series of them) through the danger of the transplant process for a child who is going to have a relatively short life in any case, plus (less justifiable) discomfort with the idea of “wasting” a kidney (even a live donor kidney) on somebody with a short expected life. Her perceived low quality of life might have been just icing on the cake.
    Of course, if the kidney only lasts 12 years, if she uses it for 12 years and nobody else would have gotten it, there’s no waste.

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  14. On the other hand, the fact that CHOP backed down leads me to suspect that either:
    1) They are guilty as charged.
    2) Their ethics people had a beautifully worked up report on why they shouldn’t do the transplant, but then the doctor who met with the family flubbed his lines.
    In any case, there should have been something detailed and in writing to hand to the family, because in a highly charged atmosphere such as this, it’s a mistake to communicate detailed information orally. Of course that leaves a paper trail, but if your decision is well-reasoned and fair, that shouldn’t bother you. (In general, I think medical folks rely way too much on oral communication.)

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  15. Ragtime, that is not Catholic teaching.
    If you’re going to talk about this stuff, please familiarize yourself with your opposition’s actual position.
    Yes, I get it. You are only permitted to abort the ectopic pregnancy if you agree to simultaneously engage in unnecessary surgery on a woman who doesn’t need it, to unnecessarily endanger the pregnant woman, and unnecessarily lower her chances of getting pregnant later.
    Because pushing a man in front of a runaway car is unethical killing, but pointing the runaway car at the man, and then not pushing him out of the way, is ethically unproblematic “letting die.”
    The article to which Lisa V linked really vindicates Amy P.
    Right. The hospital not permitting the transplant proved Amy was right, and then the hospital changing its mind and permitting the transplant also proves that Amy is right. When the CHOP building comes to life, starts high stepping, and begins singing “Hello My Baby” like Mortimer J. Frog in the Warner Brothers cartoon, I look forward to reading how that fact confirms the correctness of the Conservative position on kidney transplants.
    The moral is either (a) there is no moral here — a hospital corrected his mistake, which happens all of the time; or else (b) thank goodness this wasn’t a religious hospital, so that immoral decisions can get reversed, and not have to be defended as “doctrine.”

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  16. The linked article indicates that the hospital was engaged in bioethical reasoning, rather than, as some commentators suggested, a purely medical decision (i.e., the procedure won’t work on a patient with this condition). People objected, because “bioethical reasoning” is no more objective or universally accepted or intuitively obvious than religious doctrine. That vindicates Amy P.’s original comment.

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