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.
If we’re going to presume people are organ donors unless they opt out, we should also give people a reason to NOT opt out. Donated organs should be allocated first to those who haven’t opted out. People who opt out of organ donation should go to the back of the transplant waiting list. The United Network for Organ Sharing, which manages the national organ allocation system, has the power to make this simple policy change. No legislative action is required.
Americans who want to donate their organs to other registered organ donors don’t have to wait for UNOS to act. They can join LifeSharers, a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at http://www.LifeSharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.
Giving organs first to organ donors will save more lives by convincing more people to register as organ donors. It will also make the organ allocation system fairer. People who aren’t willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.
David J. Undis
Executive Director
LifeSharers
Thanks for posting, David! That’s good information.
I’m curious — are people who are transplant recipients generally even eligible to be organ donors? (In other words, I’m wondering if someone who has a disease that necessitates a transplant would be at all likely to actually be an organ donor, if registered as one.)
I’m assuming any system of registration would allow people to change their status as donor or not, so what’s to stop someone from registering as a donor once they realize they need a transplant, assuming (possibly quite accurately) that they will not actually be a donor?
I’m also curious to hear others’ responses to what might be considered coercive tactics. I’m not sure I think its coercive — it has a nice kind of symmetry to it — but I’m also not sure that peoples’ only reasons for wishing not to be donors is that they don’t approve of transplants in general.
Thank you again for your contribution!
-Laywer
Lawyer:
Many transplant recipients can donate their organs.
There’s nothing to stop someone from registering as an organ donor once they realize they need a transplant. LifeSharers aren’t eligible for preferred access to the organs of other members until they’ve been a member for 180 days. This is an incentive to join before you need a transplant.
There’s nothing coercive about LifeSharers. Everyone’s welcome to join but nobody is forced to join. It’s simple – I’ll give you preferred access to my organs if you’ll do the same for me.
Just about everyone would accept a transplant if they needed one to live. But only about half of us have agreed to donate your organs when we die. Whatever your reason for not donating is, if you’re willing to accept a transplant you should be willing to donate.
Thanks,
Dave Undis
LifeSharers
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?
I am not against organ donation. Feel free to read any of what I’ve written on this topic. And my argument is not ridiculous. What I said was, look at the data. Presumed consent does not mean what people in the U.S. think it means. Comparative research shows that, in practice, presumed-consent countries (a) do not perform all that much better than informed-consent countries; and (b) with literally one or two exceptions in the OECD (Austria, and to a lesser degree Belgium), presumed consent laws do not in practice remove the next-of-kin’s ability to veto donation. That means the slightly higher rates of donation seen in presumed consent countries cannot be due to the exclusion of the next-of-kin, because they aren’t excluded. As best we can tell they are the result of more investment and better training within the procurement system.
That leaves us with the question of what a strong presumed-consent law would accomplish in the United States. If such a law really, truly removed the next-of-kin from the process, it is not unreasonable to think that you’d get a very strong backlash against donation. This is so for two reasons. First, it’s a historical fact that, in assembling a viable transplant system in the ’70s and ’80s, transplant advocates had to do a lot of work to allay public fears that transplantation would lead to some kind of ghoulish body-snatching. These worries were addressed by putting together a common public understanding of donation as a scared kind of gift — that is, as something that had to be given, not something that could simply be taken. That’s the American public’s understanding of donation now. Given that, legally asserting the presumption of consent out of the blue is likely to make a lot of people very worried or very angry. You can see this directly in many of the nearly 200 comments on the Times’ blog. If the goal is to maximize the donation rate, it’s not enough to say that these people are mistaken. Fears don’t have to be well-founded to make the donation rate go down, they just have to be widespread.
Second, it’s not enough to say “Um. . . won’t those people just sign the opt-out if they are truly so concerned?” or “Opt-out if that’s your nightmare”. Why? Because the point at issue is that, when a person dies, the family or next-of-kin assert a very strong moral (and perhaps legal) right to the body. (This is why, to reiterate, most presumed consent countries allow a kin veto.) The people to worry about are not those who opt-out in advance. The problem is with the living next-of-kin of potential donors when the deceased did not opt-out in advance. Those families will feel as a matter of right that they should decide what happens to the body of their parent, spouse, or child. Under strong presumed consent a procurement coordinator can say to them, “Sorry, the law says we can take the organs regardless of what you think”. What do you think is going to happen then?
You might believe that, as a matter of ethics, law, public policy, or medical need, that the next of kin really should not have a say. That’s fine. You might believe these people are deluded or misguided in their beliefs about the treatment of bodies after death. Maybe so. You might think that, in the long run, people will eventually come around to the view that everyone should just be a donor. Perhaps they will. What I’m saying is that you cannot just wish away the social facts as they stand, and those include the fears that people have about donation and the moral rights families claim to the body. The upshot is that introducing a strong presumed-consent law in the United States is just asking for trouble. This isn’t Austria. We’re in a country where there is a great deal of suspicion of government intervention in private matters, where there are great structural inequities in health care provision, and where there is already a comparatively high-performing donation system grounded in hard-won public acceptance of the idea that organ donation is a unique “gift of life”, not a resource to be harvested. In that kind of context, it is not a “ridiculous argument” to say that the blowback on a strong presumed consent law could be enormously negative.
I agree with you that this is a really tough question — and you’re right, the family veto is certainly a more compelling thing in a presumed consent system, where the family is basically overriding silence, not someone’s clearly stated wishes.
For me anyway, the reason why it matters to me is that I think you have more of a right to decide what happens to your own body after you die than your family does. That’s a moral/ethical thing. This is especially important in situations where the family was not close or did not agree about such things.
I don’t disagree with your concerns — I just think that for me, the balance tips the other way. And in my ideal opt-out system, a lot of people would opt out. So if it is, as you suggest, a widespread “nightmare” that people have, those people should all opt out. What I think we are both really hoping is that the people who don’t really object but also aren’t proactive can be donors through an opt-out system.
Thanks for commenting — it’s good to get more voices on the blog!
-Lawyer
A few things. . .
first, I see problems with the next of kin overriding a patient’s wishes. Often the wishes of the patient fall second to the emotional strain that the family is under, or the family disagrees with the patient, or they feel sad and can’t process what they really want to choose. i see this first-hand in my job ALL the TIME. whether it’s opt-in or opt-out,though, the problem remains. for me, patients who feel strongly must opt out. i see how this is uncomfortable, but it’s really a seperate question for me from whether or not we use presumed consent.
and it terms of the fear issue. . . the majority of people do in fact want to be organ donors, and many are not on the registry. the NYT discussion cited some of those studies. i think that some good PR and an educated public is crucial, but I don’t think we should let fear of blowback stop good progressive policy. of course there will be vocal opponents, but we should not be cowed by a few loudmouths who can’t or won’t think progressively. just as we’ve been able to make donation palatable over time, we’ll be able to make this sytem work as people see that there are not, in fact, surgeons with hack saws stealing your organs.
-Nurse
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Wow, the militant Nurse totally creeps me out. And I am a doctor. (and an organ donor, AND I have a child with neprhotic syndrome). I’m sorry, we don’t override the family, and we don’t body snatch. I agree with M Healy.