Social Organ Donation?

It’s all over the place that facebook is now encouraging users to report their organ donor status, along with all the other stuff in your profile. The San Jose Mercury News has even reported that it’s already increasing registrations in California. What gives?

Nurse: The upshot is that Facebook hopes that asking people to list their organ donor status on their Facebook page will create peer pressure to sign up as a registered donor. This is a potentially good strategy to get people who would be fine with organ donation, but never bothered to sign up, to do it, or at least to think and/or talk about the issue. Especially if Facebook uses their spying/linking/advertising mojo to link you to your DMV. No harm there, right? Interesting– framing organ donation as a social issue.  I can’t really see a valid argument that peer pressure will cause people who aren’t ok with donation to sign up. I don’t see this as controversial, but then again, I’m usually wrong about that kind of thing. . . 

Lawyer: I guess it just depends on whether you see it as a personal/private kind of decision, or whether the “greater good” notion of having a donor registry to begin with really makes it a public-spirited thing anyway. Is it just sort of like the “I voted” sticker that you get on election days? Like the tote bag or bumper sticker that says you gave to NPR? Or is it somehow more private because it’s about your body? I guess I agree that I have a hard time objecting, especially since as I understand it, you can leave it blank, and it never appears. 

Nurse: The interesting question was whether Facebook could ever be used as a source of information for hospitals about the patient’s wishes if they did not officially register. The article suggests that, rather, Facebook could let the family, who makes the decision if the patent didn’t register, know what the patient wanted– essentially that they would have consented. Could it ever lead to a direct use by hospitals of this information? Probably not anytime soon, but it sounds like Facebook is adding more health features to its site– maybe we are moving towards an online “personal health record” style repository of information that could, some day, be useful in that way– but honestly, I don’t see that happening yet.

Lawyer: And ew, would you want it to? I already find it sort of annoying when people use status updates to report on their various symptoms and/or dietary and exercise achievements. A platform that’s created to be social and very adept at trying to sell you things based on your personal information seems like a bad place for personal health information.

As to the consent issue, I think that’s probably right — and it probably would lead to at least some increase in donations, assuming there are a fair number of cases where the family says no because they’re not sure whether the person wanted it. But then, I like all kinds of things on facebook. You have to wonder if any of that could come into play after you’d died. (Imagine leaving a big chunk of money to a charity which, unknown to you, has dispanded before you die; what do they do with the cash? I could see using an online profile to find information about what you would’ve wanted.)

And with my cynic hat temporarily on: Surely they did this to get some good press as a socially positive company in advance of their IPO…?

Hey, are you using that kidney?

Nurse recently read a quite peculiar news story: a pair of incarcerated sisters in Mississippi were offered release from prison on the condition that the healthy one donate a kidney the one on daily dialysis.

http://www.latimes.com/news/nationworld/nation/la-na-kidney-sisters-20101231,0,5041825.story

OOPH! Um, wow. While organ donation is great, the healthy sister is willing, and all that, I call shenanigans. If, as the governor is saying, there is no reason, like threat or rehabilitation, that either sister needs to remain incarcerated, then he should let them go. Period. Fine. Ok.

If one sister wants to donate her kidney, super! Swell! These things can both happen. But. . . once you combine them, you are getting into very murky waters. I see it as very coercive, which is never an appropriate way to make a medical decision. The health risks to the donor are not zero. And if she is making a health decision weighted with “freedom vs. life in prison,” we have issues!

So let’s take it out of the equation. If the sisters are released and then one donates her kidney to the other, without any incentive, then all is well. If they are released and the healthy sister says “uh, nevermind!! j/k!!” then she wan’t really giving true consent in the first place. She was coerced. You can’t pay people for organs for just this reason.

In the future, then, can we tell any other prisoner that they can go free provided they leave a working organ at the door??

Arizona strikes again.

Lawyer says:

Since last week’s news of Arizona’s new organ transplant/medicaid rules, denying certain types of transplants for medicaid patients as a cost-saving measure, I have been thinking about what to write here.

All I have been able to come up with is this:

Shame on you, Arizona government. This change is unacceptable. You are telling your citizens that their lives, which we can likely prolong and improve, are not worth the cost, and they can only get life-saving care if it is not on your dime. There are many things I believe a state should guarantee for all its citizens, but even if I were to strip most of them away, life-saving medical care would always be on the list. What’s worse, you’ve taken people to whom you have already promised such care and kicked them off the waiting list — unless they can raise hundreds of thousands of dollars. The life of a person with abundant resources is not worth more than the life of a working-class husband and father. Shame on you, Arizona.

How much are your eggs worth?

There’s an article on NYT today about payment to egg donors, and how we are (and aren’t) regulating it.

There’s theoretically a voluntary limit of $10K on payments (if there are extraordinary circumstances) and $5K for regular circumstances. And these limits aren’t always adhered to. Some thoughts:

Nurse: The major issue with large payments is that it can become essentialy coercive, becoming so enticing that potential donors overlook the risks and moral questions in order to receive a large payment. This issue comes up in paying research subjects, too– in either scenario, they could be seen as “preying” on poor people. It can undermine true informed consent.

Lawyer: And it calls up the issues we’ve discussed concerning organs. Sure, there are some differences — eggs aren’t serving any function in your body, etc — but in a lot of ways, they’re the same. We’ve decided as a society that you can sell your eggs or sperm, but not your kidney. That you can decide to donate your organs, but not sell them. These are all just rules we’ve made, for lots of policy reasons, including coercion and a general feeling of sanctity of life.

Nurse: Do women understand what the physical process involves? i think in some cases they may not until they have already decided to do it for the money.

Lawyer: And part of what this article is concerned about is a “bait and switch” that happens — the ad says 10K, or even 50K, and you call them up, and then they negotiate it way down.

Nurse: They get hormone shots, which can have all kinds of side effects, most merely annoying, but some serious, and they have to have eggs removed in what is essentially a surgery. We haven’t been doing this for long enough to know how safe it is in the long term.

Lawyer: And something the article doesn’t discuss is a privacy question. Pre-implantation genetic diagnosis is now both possible and increasingly common — that means looking at the DNA of the embryo before implanting it. I don’t know that this has been done much with donated eggs, but it surely could be. Are donors giving consent for the parents to look at their DNA? Now and/or in the future? If they discover something like a disease risk, can they tell the donor? Should they? Must they? Ideally all this would be discussed ahead of time but right now I can’t imagine that it is, as a general practice.

Nurse: It’s interesting that the discussion over sperm donation is less intense. Sure, it’s physically easier to donate sperm, but part of the issue seems to be the long-term reflection that you have in fact parented a child, and I don’t hear much of that with sperm donors. I wonder if the mind-trick here is that an egg seems more substantial, we have fewer of them, and even that women cannot ever unknowingly mother a child naturally, unlike men.

Lawyer: I think the physical procedure is quite relevant here. Surgery and hormone shots vs, well, you know. But you’re right, that real difference — that women can’t unknowingly parent children in the natural way — seems somehow significant.

Legally, the rules can be different for the different sexes if the variation is based on REAL DIFFERENCES, not on stereotypes — so with regulation of things intensely biological, as here (at least in terms of the medical procedure involved), we’re on good footing for different rules. Though the difference in terms of it being your child out there is. . . less clearly a “real difference.” There has been a decent amount of litigation over the differences between mothers and fathers, and laws generally allow them to be treated differently in terms of parental rights when there’s some sort of dispute. It seems, however, that the difference that justifies those decisions — that it’s pretty much impossible to deny or contest maternity — would begin to evaporate in the IVF context.

The bottom line, I think, is that we need to make sure this is properly regulated. The pricing guidelines are all voluntary, and that is fine or would be fine if they were adhered to — but what really is the appropriate price? I’m tempted to say that there should be a single level of compensation, because why should I be paid 50K for undergoing a procedure identical to another woman who only gets 5K, because I was born with qualities completely out of my control that she wasn’t?

New York’s experiment with opt-out organ donation

Earlier this year, we posted about people selling their organs. Now we want to talk about people donating their organs. Or more specifically, the state assuming you want to donate your organs unless you’ve let them know otherwise. NYT’s always-thought provoking Room for Debate blog has a piece on a proposed New York law that does two things: (1) Makes it so that family members can no longer override someone’s clear wishes to donate his organs and (2) Assumes everyone wishes to be an organ donor unless they specifically opt out.

Nurse: Just some background and disclosures: I don’t know how the process for organ donation works in New York, but in AZ, any death in hospital gets called in to the donor network– even if we think there’s no way they’re a candidate– and they decide whether to pursue it. The rest I am not really involved in (unless someone who’s brain dead is kept alive in order to preserve organs– but that’s a story for another day. It’s amazing how much goes into it.)

It seems like the first part of NY’s law, which ends the right of family to question/revoke a patient’s own designation as an organ donor, is pretty straightforward, no? I don’t see any real problem with that.

Lawyer: Agreed. I guess the argument against it is that if you’re dead, you can’t possibly care anymore, but your family members might — but seeing as we, as a society, allow people to leave wills, and generally honor them when possible, that provision seems pretty unproblematic to me, too.

Nurse: In terms of the opt-out versus opt-in– i’m usually an opt-in kind of girl. I want to have to check the box that says “please send me special offers” or “you can share my information.” But it seems like the calculus is changed by the fact that organ donation deals with a “greater good” in a way that marketing doesn’t. Is it wrong to assume that each person will make a contribution to saving lives when they themselves are dead? I’d say no, as long as there’s a reliable mechanism to opt out.

Lawyer: I’d tend to agree — we will always have default rules, and it isn’t clear to me that one way is inherently more of a default than the other. We have lots of other regulations about what happens to bodies after death (like where you can’t put them, for instance) — and there are systems for what happens to them if there are no other wishes — tough to say that one particular outcome should be the default for some reason other than a policy judgment.

Nurse: I have always thought, and several of the “panelists” in the NYT article point out, that most people are willing to be organ donors, but they don’t have their lisence with them when they die, their family doesn’t know and is too distraught to really consider it, they didn’t understand the process, or they never felt like checking the box or filling out the form or whatever it took. So we lose some potential donors this way. It also seems like opt-out would make it seem like a more serious choice. People might consider it. If you have to say “no, I will not donate my organs” you are making a deliberate decision in a way that you are not when you don’t check a box or sign a form that says you will. It will kind of tip the indifferent people towards offering something for the greater good.

Lawyer: That’s probably true, but I’m not sure that makes the choice more significant one way or the other. If it’s important to you, then checking the box feels important if the box says “Yes, I will be a donor,” and not checking it feels important if you feel strongly about that. I don’t see how it’s actually different, except that people who are on the fence might not bother to check a box specifically opting out of something if they don’t really care — in which case it wasn’t significant anyway.

Nurse: Of course, in this way, there will no doubt be people who do not want to donate whose organs get used. The same obstacles, like them not having their lisence with them or the family disagreeing, will apply to this opposite scenario. But is error on the side of taking more organs better than error on the side of wasting them? I’d say yes, but then again, I’d want my organs donated. YOU HEAR THAT INTERNET? NURSE IS AN ORGAN DONOR.

Lawyer: Oh, this is really the heart of it, isn’t it? LAWYER IS AN ORGAN DONOR TOO. But not everyone is. I guess I’d have to find some people who object and speak to them to understand the origin of the objection. Is it religious/spiritual? Certainly in some cases it is, in which case I think we should take that very seriously. If it’s more of a sense of ownership or privacy, well, I’d defer somewhat less to that — but I still find it worrisome. Probably more worrisome than “wasting” organs that the person would’ve wanted to donate (because there was no guarantee they could’ve been a donor anyway — depending on manner of death, matches, etc.) In other words, it seems to me thaty ou have an absolute right to NOT be a donor, but no corresponding right to BE a donor.

Nurse: I think one legitimate danger of opt-out is that people need to truly understand what the law is and that they have a right to opt out. There needs to be outreach, and it needs to reach people who are not english-language speakers and who are illiterate.  We need to be willing and able to protect individual rights even as we undertake a measure that is in service of the “greater good. “. Now we’ve talked in previous posts about whether you own your body, your organs, and your DNA, so I won’t open that can of worms, but. . . we have individual rights, let’s just go with that.

Lawyer: And I’m really not sure if/how we could accomplish that outreach to a level that would be effective. What could we possibly tie it to? How could we reach everyone who would need to opt out? Driver’s licenses simply won’t do in that context. Would it only be for people over 18? It could be tied, for men, to the selective service — but we can’t tie it to, say, kindergarden registration, or social security cards, because you can’t make that choice when you’re an infant or a 5-year-old. I’m not sure it’s insurmountable, and I’m also not sure it isn’t.

Nurse: One of the panelists, Kieran Healy from Duke, makes what amounts to a ridiculous argument that this law will rekindle fears that surgeons are standing over sick people with hack saws, waiting to harvest their organs, and that they might just take them even if you’re not truly gone. Um. . . won’t those people just sign the opt-out if they are truly so concerned? As Arthur Caplan from Penn (woot woot) points out, most people do want to be donors.  Healy also makes no suggestions. Maybe he’s against organ donation all together?

Lawyer: And what’s the source of the idea that doctors have more interest in one patient than in another? What interest does the doctor personally have in harvesting organs, unless the patient is his own kid? I agree. Opt out if that’s your nightmare.

Nurse: Don’t even get me started on Mary Ann Baily from Hastings, who seems to be arguing that organ donation is stupid and never works anyway. She goes into how there are so few suitable donors that this whole hoopla is kind of dumb– to which I have to say, sorry, but. . . doesn’t the small number of suitable donors make it MORE important to capture as many of them as we can? And let’s not just talk about the big-deal hearts and lungs and kidneys– We need corneas, too!

Lawyer: AND, transplantation will never improve if we don’t get to keep doing it. The more we do it, the better we can get at it. I mean, right? Nurse? I don’t really know. I’m just going on intuition here.

Nurse: But she, like Healy, is stuck on the notion that this system will create a culture of fear. People will avoid driving so that they don’t get into car accidents and wind up as organ donors because they didn’t read the form properly! Her suggestions? Well,  sure, we can do more to get consent in the current method, we can try to increase people who opt in (we tried that, no?) or here’s my favorite: let’s just develop better technologies to support people with organ failure so that they don’t need a transplant! Wow! I wish I thought of that! Thanks, Mary Ann Baily!

Lawyer: Ayeayeayeayeaye. ::glares north, in the direction of Hastings:: — I’m not sure that even merits a response.

Bottom line? I’m not sure whether I support this or not — but mostly on logistical grounds.

Nurse: I support it. Sure, it’s not perfect, but I think it has the potential to create more good than harm, and the harm is mostly avoidable as long as the person involved cares enough to check the right box. The agruments writen in the article were so much stronger on the pro side that i almost felt sorry for the cons. ALMOST.

Selling a kidney? Read this!

Nurse: Beyond the stuff of urban legends, there really is a black market for organs– kidneys, especially, since a living donor can give one up and essentially have no ill effects. To be simplistic, the black market thrives because there are more people with kidney failure than there are willing– or cadaverous– donors. Iran has a program that allows the government– and the recipient, through a 3rd party– to pay the donor a “modest sum”. This brought up all kinds of stuff for both of us!

Lawyer: Hmm. The part about the recipients paying the donors was more immediately troubling to me. Access question — who gets the kidneys? Definitely legal issues here — in terms of ownership rights. Comes up in property law — in what way do you own your body/organs?
Nurse: I’d be inclined to say you own your body/organs more than anything else in the world– more than your shirt, more than your house. They are absolutely yours.
Lawyer: We can certainly conceive of different kinds of ownership — ownership that allows you to exclude others (you can’t just TAKE my kidney) or that allows you to give it away, or destroy it after its removal, but NOT sell it. These different sorts of rights can be separated from each other. At the minimum, we could say that you don’t own your body at all — all you have is a right to protect it against unauthorized invasion. So you can’t sell it or rent it out (prostitution, for example), and you can’t even control what happens to your body after you die (though in our society, you can) — see what I’m saying? Different types of legal rights we could or could not grant. Related question about who owns tissue excised from your body during non-elective surgery. (One case I studied involves the spleen removed from a patient with a rare form of leukemia being used for research and subsequent profit without his consent — and the court, though divided, allowing it, and granting him ZERO rights to any of the profits.)
Nurse: Is it ever ethical to pay living organ donors for their organs, as is done in this case (Iran)? There are of course lots of protections in place for the donors, including who can evaluate their suitability. Also, it’s a pretty small payment– but likely enough to be essentially coercive to someone who is hard up. in the article, doctors say they believe donors act out of altruism, but why then include a financial component at all? i can see including care for free, but why cash?
Lawyer: This might be part of the problem, too. . . people who are desperate might actually “under-price” this sort of thing. I’d venture to guess that in a real competitive market for this sort of thing, the value of all the pain and future uncertainty of giving up a kidney would be a lot more than $1200. But I agree — why cash at all? If it’s altruism, pay for their care, pay for some monitoring after the procedure, maybe even pay them for their time — but not for their organs.
Nurse: Normal consent procedures certainly won’t cut it, if you ask me– people frequently sign without understanding, knowing that the procedure is in their best interest. in this case, it’s in someone else’s interest, not their own. that changes the calculus drastically. to truly accept the risk, the donor must have a fairly sophisticated understanding.
Lawyer: How would you accomplish a “super-consent”? Is there such a thing already in place for other types of situations? Research?
Nurse: Research is the closest case I can think of, and research consents are far more extensive than a basic procedure consent. They can be pages and pages and pages, whereas a regular consent form that we’d use in the hospital is one page, with a minimal amount of information written in.
To what extent can the government intervene? it’s illegal to sell your organs, no? why? would a regulated system circumvent the concerns at all?
Lawyer: The government can intervene in that they can make it illegal to sell your organs — basically, if a doctor removes your kidney, you have no claim to payment. Of course, there can be all sorts of other “payment” that doesn’t leave a paper trail… bag of hundred dollar bills, etc. (cf. gestational surrogacy — can’t actually pay someone to do this for you. But you can over-pay them for nutrition during gestation, etc.)
Nurse: People CAN sell plasma and eggs, and both of these donation procedures carry some risk. not as much as nephrectomy, but still.
Lawyer: Is it just about the risk of the procedure itself, or also about possible compromised future health? (I mean, you definitely don’t need all your plasma or eggs, but don’t you need both your kidneys? Need as in, there’s a reason we have 2? Is the second one really just a backup? What are the increased risks of living with a single kidney? Will the health care system have to bear the cost of this risk, especially for the aforementioned patients who are indigent?)
Nurse: You really only need one. The risk of living with one is that you’re screwed if your one kidney fails. Otherwise people can live with a single kidney and have no adverse affects.
Lawyer: A further curiosity: are there really any other organs where we could see this come up? Most of the things we desperately need, we don’t have two of (e.g. liver). So, nurse, is this just, always and forever, about kidneys?
Nurse:  Well. . . for now it is. It is possible to transplant part of a liver from a living donor. I believe it’s somewhat riskier, but in general it’s fairly successful. And like our earlier discussion, things like blood, plasma,and  eggs are certainly part of the discussion.
Lawyer: I am also curious about alternatives. I know there has been work on artificial hearts — what about kidneys? (I mean, obviously, short of lifetime dialysis.)
Nurse: Well, dialysis IS really an artificial kidney.  And as of now, it’s the only other way to do it. And if we wanted to open up a can of worms about cost, both financially and in terms of quality of life, that would be a good one!