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July 15, 2006

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Aqui no Brasil, um jornalista me disse que não queria publicar uma crítica à corrupção na fila do STN porque isto poderia...dificultar as doações. Lá, a discussão está neste nível (tomara que doadores não tenham internet em casa, né?). Por... [Read More]

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Michael Risch

Interesting post. Did you learn anything about why the question is asked? The first thought that came to my mind was that this was an informed consent/risk management question. That is, the doctor doesn't want the donor to come back saying "Why didn't someone tell me that I only had two kidneys!" if the long odds occur. I could even see this question being asked if the person had no children. Perhaps this is no different than the other questions I'm sure is asked: "You realize that if your remaining kidney fails or is injured, you won't have a backup."

Obviously the end effect is the same, but if the reasons are risk management (as opposed to scare tactic), it might require a different policy change to affect the behavior.

Dave

This approach doesn't seem to me that different than the standard approach in the medical field of apprizing patients of the worst-case risk scenarios before administering a particular treatment. For example, most pharmaceuticals contain a laundry-list of terrible side effects without giving users any sense of the probabilities associated with them. And in the altruism context, there's an equally scary consent requirement before you donate blood to the Red Cross that probably deters many would-be blood givers.

I don't disagree with Richard's point that framing the implications of donating a kidney in dire terms is likely to suboptimally decrease altruistic donation, but neither do I think the notion of seeking to assure that consent to medical procedures is fully informed necessarily presents problems. There may, after all, be grossly underinformed people who rashly decide to donate a kidney but wouldn't (or shouldn't) if they had all the facts about attendant risks.

So what about a simple cost-and-benefit chart distributed to each would-be kidney donor. It could be phrased in neutral language (without lauding the donor's heroism or calling them a bad parent for selling out future renally-challenged kids) and include probabilities with each risk so people could assess the likelihood of each of them.

Kimball Corson

On the probability alone, I bet if you responded to the unethical question with a "What a dumb question is that?," that you and your kidney would be shown the door, and the interviewer's notes would likely contain the reference "Unsuitable. Kidney probably arrogant too." Too, kidney suitability should be more important than donor suitability, at least to me as a putative receipient. What are we guarding against here, a fraudulently induced donation claim, seeking restitution or unspecified damages and visitation rights? If a prospective donor is fully informed, agrees and signs a limited release (reserving only a malpractice claim as to extraction), should not that be the end of it? Also, who did not get the kidney or got a lesser one because of the interviewer's silly question and reaction to the answer? Isn't there an ethical issue there too? Altruism always has a tough time of it because it is relatively rare and people like to take unfair advantage of it.

Leif

"Gosh, Doc, I was gonna come in for that nephritis treatment, but my kidney thought it could handle it okay without all your witch-doctor mumbo-jumbo. Huh? Whaddaya mean three weeks?"

That's exactly the opening line I needed to read this Monday morning, Kimball.

Aaron Ziegler

A very interesting and insightful article. I donated a kidney three years ago via a non-designated (stranger recipient) program at the University of Minnesota. It was one of the most rewarding things I've ever done.

The question about not being able to donate to my children was asked. Mr. Epstein's insight: "By no stretch of the imagination could that tiny future loss be thought to approach, let alone equal, to the immediate misery that is likely to befall any needy donee who doesn’t get the organ that he or she needs right now." is very much along the lines of what I told the psychologist who interviewed me. I asked her how I could go down to the transplant floor, where patients were dying, and tell them I wanted to wait a few years (which could have been a death sentence for a potential recipient) until I was sure my kids didn't need one. I guess I passed the "audition," as I was allowed to donate.

I would, however, note that the question about organ availability to children may be more fair than Mr. Epstein notes. This is because a thoughtful donor should have already considered the possibility that this question poses. If not, then they have not given sufficient thought to their decision to donate. Someone with a notion of altruism developed to the point at which they would seriously consider donating an organ are unlikely to be deterred by the question about availability of a kidney for their children.

Much more threatening to the supply of non-designated donors is lack of information. I initially became interested after reading an article in USA Today about 4 years ago. Though I knew the possibility existed, I had to make many calls before I was able to even find out how to begin exploring the process of donation. I was turned away from several organizations, who had not even heard of non-designated donation. It was only through a great deal of persistence that I was able to find a resource (the University of Minnesota Transplant Center) that was able to help me.

The Law Fairy

Professor Epstein, I think you're leaping a bit too far in your criticism of the question. While it's a fair criticism, I fail to see how it is a "cruel and dangerous practice." Surely as an expert in law and economics you realize there may be more to the picture than we see?

Dave noted that this does not seem so terribly different from other risk-management approaches, and I'm inclined to believe him. While this one packs more of an emotional wallop than, say, a side effect of nausea for a certain drug, the bottom line is that patients still need to be informed of all the possible risks, because if they aren't, they have an arguable claim that they have been "duped" into donating an organ.

Think about how it may play out if this specific risk wasn't cited to the patient: Ms. Smith, a single mother with no living relatives, donates her kidney to John Doe, only to learn two years later that her son, Johnny, has a rare (and previously undetected) condition for which the only treatment is a kidney transplant. Although Ms. Smith is placed higher on the list for recipients, Johnny never donated a kidney, so he doesn't get this benefit (changing the benefit to be transferable to family members might help alleviate this particular problem). Ms. Smith sues the doctor and hospital (and whoever else she can) who took her kidney, and her attorney, a persuasive and brilliant litigator, argues convincingly that she was not informed and therefore did not give informed consent. However, the jury is comprised of fundamentalist Mormons who believe having children out of wedlock is sinful, and they return a verdict against her within ten minutes.

Other potential donors hear about this and are immediately dissuaded from donating. Who knows what other risks they might not have thought of? Now we're even *more* desperately in need of donations, and everyone is afraid to donate because they no longer trust doctors and hospitals to give them the whole truth about the risks of organ donation.

Obviously this is an extreme example -- but when you're talking about something this important you have to consider the extremes. Isn't it preferable that a handful of people are spooked out of donating because of the question, rather than a situation where thousands are spooked out of donating because it was never asked?

Further, as a minor point, caring for one's children is altruistic, rather than egoistic, as your post suggests.

Kimball Corson

A considered reaction to the question could come out exactly where the "what a dumb question is that?" reaction does, or worse. For example, a woman considering donation, decides not to on the wild outside chance her children might need it. The children never need it. The woman ages and then her kidneys start to fail. She goes on dialysis and alas she too needs a new kidney. The person who long ago needed her kidney died for want of a kidney, and now it is her turn to die because they are still asking that dumb question and scared away or shooed off her putative doner.

The Law Fairy

Kimball, the problem with your example is that it assumes that the woman "owes" it to someone else to donate her kidney. It characterizes her death as some kind of retribution for caring about her own child rather than some unnamed, amorphous stranger (what a horrible person!) It's an *extremely* troubling assumption that anyone can *owe* anyone else a part of his or her body. At the very least this seems to cut pretty clearly against Roe v. Wade, no?

Kimball Corson

Law Fairy,
I don’t think my woman considering donation “owes” her kidney to anyone. She just heard about a neighbor doing it and thought she would look into donating hers too (the “old kidney bandwagon effect”). She gets to do what she wants with her kidney and so does not “owe” it per se to anyone. She just decides to keep it around in case one of her kids needs it. Her death is not so much retribution for loving her child, as most of us do, as it is the happenstance of facts and the consequence of the dumb question working over time to scare off donors (pun intended). I am unsure of the parallel to Roe v. Wade, but I certainly see a parallel of sorts to abortion generally. This is all just another form of kidney stew.

The Law Fairy

Well, my point was that much of what I'm hearing here seems to think it is somehow "wrong" to decide not to donate your kidney because someone you know and love may someday need it. Much of what I'm sensing in the thrust of this conversation is that there is something bad about *not* giving up a kidney, even if this bad is not the non-giver's fault, but an intervenor's. I posit that you cannot think that it is wrong to remind people that they may not want to donate their kidneys, without some notion that the decision should not rest one hundred percent with the individual. This is the whole problem with discussions of organ donation -- I can't help but sense an agenda to get people to mutilate their own bodies to help someone else. I say mutilate, not because I have a problem with organ donation in general, but because it is important to remember that when someone donates an organ, she agrees to have her body DISMEMBERED for the benefit, sometimes, of a complete stranger. If she chooses to do this, she is an amazing and courageous person, and deserving of some of the highest accolades society can give her. But to suggest, even for a second, even only by implication, that there is something "wrong" about a decision not to have her internal organs chopped up for the benefit of some amorphous, nameless person, deeply troubles me.

The reference to Roe v. Wade was because it establishes inalienable rights over one's own body (specifically for women, since women have had to struggle longer and harder for the same rights of bodily integrity as men... but that's a different conversation). It's the same thing -- telling someone "you should donate an organ" seems to me along the lines of telling them "you should carry this child to term." There's no "should" about it -- unless it's your body, butt the hell out.

Kimball Corson

Law Fairy writes: “Well, my point was that much of what I'm hearing here seems to think it is somehow "wrong" to decide not to donate your kidney because someone you know and love may someday need it.”

I respond: True, especially if someone needs it now and the donor was willing to donate before being spooked. Viewed from the vantage point of social welfare, it is wrong. If giving is not discouraged, there will be more kidneys available for all including any of the woman’s children when that time comes. We should not rain on the kidney parade.

Law Fairy: “Much of what I'm sensing in the thrust of this conversation is that there is something bad about *not* giving up a kidney, even if this bad is not the non-giver's fault, but an intervenor's.”

I respond: It is bad if it is the fault of the intervenor. If someone needs a kidney at time A and if someone wants to donate at time A, we should not interfere with the latter’s decision to donate and induce them not to. It deprives someone of a kidney that is badly needed.

Law Fairy: “I posit that you cannot think that it is wrong to remind people that they may not want to donate their kidneys, without some notion that the decision should not rest one hundred percent with the individual.”

I respond: But it is wrong. The sole decision should rest with the individual and to interfere and scare them, questioning implicitly their love for their own children, with a hyper remote improbably all buried in a question is irresponsible and not in anyone’s interest, not even the kids (a) if they never need a new kidney (the probability) or (b) can get another because they are readily available in the absence of “scare tactics” by intervenors.

Law Fairy: “This is the whole problem with discussions of organ donation -- I can't help but sense an agenda to get people to mutilate their own bodies to help someone else. I say mutilate, not because I have a problem with organ donation in general, but because it is important to remember that when someone donates an organ, she agrees to have her body DISMEMBERED for the benefit, sometimes, of a complete stranger. If she chooses to do this, she is an amazing and courageous person, and deserving of some of the highest accolades society can give her.”

I respond: I agree. There should not be an agenda either way. It is multination. It is dismemberment. (But remember, you cannot take it with you when you go and if it is not timely extracted, it just goes with you and then dies too.) When a man donates, he is indeed noble and courageous and deserving of some of the highest accolades society can give him. But it should be his informed decision to make and he should be encouraged to research the process and think about it, but not told what he is to think, which is what the dumb question does.

Law Fairy: “But to suggest, even for a second, even only by implication, that there is something "wrong" about a decision not to have her internal organs chopped up for the benefit of some amorphous, nameless person, deeply troubles me.”

I respond: We agree. If after researching the matter to his own satisfaction, he decides not to donate his kidney, then that is his business and no one should trying to change his mind by asking, say, for an example, if he realizes his decision might mean someone could die because they don’t get his kidney. He (and especially she) should not be told what to think, only that they should think and think it through on their own and make an informed decision.

Law Fairy: “The reference to Roe v. Wade was because it establishes inalienable rights over one's own body (specifically for women, since women have had to struggle longer and harder for the same rights of bodily integrity as men... but that's a different conversation). It's the same thing -- telling someone "you should donate an organ" seems to me along the lines of telling them "you should carry this child to term." There's no "should" about it -- unless it's your body, butt the hell out.

I respond: That is exactly what I am saying. Don’t ask leading questions of the putative donor that implicitly tell them what they should think. Tell them to inform themselves to their satisfaction and make their own decision and whatever they decide is fine. (I also agree with your parenthetical.) On the abortion issue, however, should the husband or significant other, as the father have any say in the decision of the woman? After all, it took the two of them to tango and the genes of both are at issue, at least partially (the baby’s)?

The Law Fairy

lol -- sorry, Kimball, I am not touching your abortion question with a 40-foot pole. I wasn't bringing it up to bring abortion into the debate; just noting the similarity of telling someone "you should donate" to telling them "you should carry the kid." That was the sole purpose. If you (not meaning you specifically, Kimball, just a general "you" to anyone reading) think Roe v. Wade was a bad decision, then go ahead and use the anti-Roe argument to support Epstein's position (or don't, if, like me, you disagree with him). But I'm going to save my views on Roe and its offspring (no pun intended) for another day.

Anyway, I see your point about the intervenor trying to change the person's mind, but I don't see how this is any different from ensuring that the assumption of risk and waiver of rights is informed and voluntary. Particularly when I see posts like Epstein's, I'm reminded of the pressure in society to be listed on the organ donors list. I am not, not because I think I am particularly selfish (though feel free to disagree) or because I'm worried about my non-existent children or because I have moral qualms with the organ donation issue (although Epstein's post, in typical economic libertarian form, completely ignores some of the valid moral philosophies opposed to organ transplants). I'm not a donor simply because it increases my marginal risk of premature death. I don't have the statistics on hand, but I have seen statistics that suggest that doctors and hospitals may invest less effort in saving a person's life if he or she is on the organ donor's list. I like life. I probably shouldn't like it as much as I do, but what can I say, I'm young and I'd like to live a while longer. So maybe that makes me a selfish bastard -- but it is hardly Epstein's place to say so.

Which I guess kind of brings me to the crux of why this issue raises my hackles: Epstein seems to me to be questioning a *moral* system by pretending to stand on the outside, as a completely rational observer with an obvious calculus. He comes down too heavy-handed on one side of what is, at its core, a *moral* issue. Epstein is free, like any of us, to engage in two-bit moral philosophizing. But what disturbs me is when he, in the footsteps of many other law and economics experts, tries to cloak the inherently moral aspect of it in social optimality language. Whether or not people should be reminded of every possible risk of donation is at least in large part a MORAL question. So if Professor Epstein is going to sit in condemnation of those who value informed choice, even at the chance that lives may be lost as a result, then he had better come up with a MORAL reason to do so.

Kimball Corson

Law fairy writes: “lol -- sorry, Kimball, I am not touching your abortion question with a 40-foot pole. I wasn't bringing it up to bring abortion into the debate; just noting the similarity of telling someone "you should donate" to telling them "you should carry the kid." That was the sole purpose.

I respond: Chiickeeen.

Law Fairy goes on: “If you (not meaning you specifically, Kimball, just a general "you" to anyone reading) think Roe v. Wade was a bad decision, then go ahead and use the anti-Roe argument to support Epstein's position (or don't, if, like me, you disagree with him). But I'm going to save my views on Roe and its offspring (no pun intended) for another day.”

I respond: Chiickeeen. Actually, I like both Roe v Wade and Epstein’s position here. Roe brings to mind the Catholic shouts and slurs directed against young women entering abortion clinics and the devils who run them, and Epstein’s post addresses the same kind of coercion in a very much milder form and under the guise of giving information for valid consent.

Law Fairy: “Anyway, I see your point about the intervenor trying to change the person's mind, but I don't see how this is any different from ensuring that the assumption of risk and waiver of rights is informed and voluntary.”

I respond: Exactly and you and I have danced around this point before regarding stocks for petty thieves. It is a very interesting point. Consider a social order of all highly educated and smart individuals. My “stocks” door notice with entrance into the store should easily create informed consent and a full and knowing waiver of all rights without more (assuming no language barrier). On the other hand, in a social order of 15% highly educated and smart people and the rest functional illiterates, such notice clearly won’t do. Consent must be fully informed and waiver must be knowingly made of all rights fully understood and those elements need to be establishable factually. The first problem is what should be the rule of law here and for whom. The second is who gets to do the informing because invariably the informer is implicitly biased, down to order of presentation and implicit personal positions. Now we are arguably in the territory of Epstein’s example here. The illiterate cannot go out and research and read all the pros and cons from different sources, as I suggest, by definition. In the process of spoon feeding to get to informed consent and knowing waiver, bias creep in, down to body language, etc. and emphases are implicit, both perhaps unconsciously, but both easily and especially picked up on by the illiterate. What to do? It is a problem. (I once won a case by showing the defendant company used similar defensive language in its own form contracts and necessarily understood what it meant and so could not play dumb now.) I have no quick answer, except to say the same rule of law for everyone does not make sense here and no one ought to have to listen to the loaded "consent" presentation.

Law Fairy: “Particularly when I see posts like Epstein's, I'm reminded of the pressure in society to be listed on the organ donors list. I am not, not because I think I am particularly selfish (though feel free to disagree) or because I'm worried about my non-existent children or because I have moral qualms with the organ donation issue (although Epstein's post, in typical economic libertarian form, completely ignores some of the valid moral philosophies opposed to organ transplants). I'm not a donor simply because it increases my marginal risk of premature death. I don't have the statistics on hand, but I have seen statistics that suggest that doctors and hospitals may invest less effort in saving a person's life if he or she is on the organ donor's list.”

I respond: Your concern is legitimate. You shouldn’t have to feel pressure to donate when you don’t want to. You should not even have to have a good excuse, as you do, for not donating. An “I don’t know why. I just don’t want to” should be good enough to take you off the hook. End of story.

Law Fairy: “I like life. I probably shouldn't like it as much as I do, but what can I say, I'm young and I'd like to live a while longer. So maybe that makes me a selfish bastard -- but it is hardly Epstein's place to say so.”

I respond: It does not make you a selfish bastard. It make you very Nietzschian.

Law Fairy: “Which I guess kind of brings me to the crux of why this issue raises my hackles: Epstein seems to me to be questioning a *moral* system by pretending to stand on the outside, as a completely rational observer with an obvious calculus. He comes down too heavy-handed on one side of what is, at its core, a *moral* issue. Epstein is free, like any of us, to engage in two-bit moral philosophizing. But what disturbs me is when he, in the footsteps of many other law and economics experts, tries to cloak the inherently moral aspect of it in social optimality language. Whether or not people should be reminded of every possible risk of donation is at least in large part a MORAL question. So if Professor Epstein is going to sit in condemnation of those who value informed choice, even at the chance that lives may be lost as a result, then he had better come up with a MORAL reason to do so.

I respond: That’s a mouth full, so here's another. I think Epstein just spotted a loaded question with its answer built into its implications and called attention to it, without more, or at least much more. His target is neutrality. That is fair enough. Had the question or comment been oppositely but similarly loaded, Epstein would have challenged that too, I believe. For example, “Now you should not feel you have to donate your kidney. It is perfectly OK not to, but you do need to understand how important this general issue is for the parents of the children needing kidneys and the difficulty they have of sleeping at night.” All choice has moral implications. Those not philosophically trained don’t always realize that. Those with such training may also choose not to realize that. That lack of realization leads naturally enough to social optimizing with inherent trade-offs that have roiled philosophers since Socrates, at least. Ayer and the logical positivists go so far as to say there is no moral, only preference grunts. In short, the problems of what is moral and what is not bother philosophers too or more, and if they can’t give us a single position, we economists get to run free with our social optimizing language, at least until they straighten out their own house and coherently tell us what is moral and what is not and why. For the here and now, neutrality should be the target.

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