Presumed Consent and Organ Donation

by on May 4, 2010 at 7:31 am in Economics, Law, Medicine, Religion | Permalink

A New York assemblyman wants NY to adopt a presumed consent law for organ donation. 

The legislation, introduced by Assemblyman Richard Brodsky, a Westchester Democrat, is in two parts: the first step would end the right of the next of kin to challenge the decisions of their dead or dying relatives to donate their organs.

In a second measure, which is far more contentious, people would have to indicate in official documents – their driver’s licenses, most commonly – that they specifically don’t want to donate organs. If the box is not checked, it is presumed the person wants to donate.

The first thing to note about this proposal is that contrary to what Brodsky suggests, the problem isn't families who refuse to follow the wishes of the potential donor–as a rule, families who know, follow.  The problem is that families often don't know what their loves ones would have wanted because many people don't sign their organ donor cards.  

In fact, the way presumed consent actually works is not by overriding the wishes of the family it's by making the wishes of the potential donor more clearly known to her family.  In most presumed consent countries the family still has the ultimate say in practice because what doctor is going to want to go against the wishes of the family in a time of grief?  Instead, presumed consent increases the probability that families say yes by changing their background information from my loved one didn't opt-in to my loved one didn't opt-out. 

So under presumed consent we get more families saying yes–but not all–and there are other constraints such as the number of people who die in a way that makes their organs available for transplant and the availability of transplant surgeons and facilities to do the operation and so forth.

In a roundtable on this issue with Sally Satel, Art Kaplan and others, Kieran Hiely notes:

Spain’s success is due to effective management of the transplant
system, not a simple legal rule. Similarly, Italy’s donation rate grew
rapidly in the 1990s thanks to investment in its system, not because of
its long-standing presumed consent law. Some countries, notably
Austria, do have “true” presumed consent, with no kin veto. But they do
not outperform countries like the U.S. by any great margin.

I'm actually a bit more positive than Kieran, the best evidence is that presumed consent raises donation rates by perhaps 20-30%.  Not bad, but not enough to eliminate the shortage.  To do that, as Satel notes in her contribution to the roundtable it will take live donation.

Kieran also writes:

It’s also worth remembering that, since the 1970s, the U.S.
“transplant community” has worked hard to allay public concerns that
surgeons might be too eager to harvest organs, or that the state might
play too calculating a role in deciding what happens to the bodies of
potential donors.

The latter point is especially important in the United States.  Brazil, for example, switched to presumed consent and then switched back to opt-in when people became fearful and outraged and donation rates fell.  It's not hard to imagine similar blowback in the United States.

It's also worth remembering that considered as a whole the U.S. system is the best in the world.  Spain does have a very high rate of deceased donation, but it does poorly on live donation.  Iran leads the world on live donation because it compensates donors but due to religious feelings about the sacredness of the body Iran, like other Muslim countries, does poorly on deceased donation.  The US does well on both deceased and live donation and in total leads the world.

We can do better but we do need to tread carefully.

OrganDonationRatesWorld

Tomasz Wegrzanowski May 4, 2010 at 8:09 am

The politics moves so slowly that we’ll be able to make organs from stem cells long before they figure out how to fix organ donation mess.

Michael Thomas May 4, 2010 at 8:24 am

The thing that surprised me about this is that presumed consent is nullified by the doctors at least or the hospital’s fear of litigation.

The assumption is that there is some liability unless the family is asked. Spain has non-doctor specialists that “counsel” the family.

I think this recognizes something that must be a regular or common feature of humanity, we assume the next of kin is the best person to make decisions over the body of the deceased.

I don’t really have much stake in what happens to my body after death. I am pretty sure that I don’t want to be embalmed it is a nasty chemical process for an imaginary benefit. I would hate to think the last thing that my existence was responsible for is to pollute the soil where I was left. I think this is far worse than someone getting my organs. It is all framing the question right? I wonder why more people don’t think in terms of cremation vs. organ donation. In cremation you are in an unrecognizable form. In organ donation, some portion of you lives on much longer.

The question is simply the most efficient property rights system (presuming that we are only interested in increasing body tissue available for living people).

Jens Fiederer May 4, 2010 at 8:55 am

I really DON’T like the current system here in NY state. I’d like to be an organ donor when I die, and went to sign the back of my drivers license – actually, now that I look at it, I DID sign it, two years ago…but right underneath my signature are two lines marked “Witness”, both of which are still blank. It’s VERY awkward to grab somebody at work and ask them to witness.

Are my wishes as indicated valid without the witnesses? I have no idea.

Andrew May 4, 2010 at 9:04 am

I mean that if you think it is just about the wishes of the deceased you are mistaken and if you build your policy around tricking or finagling or strong-arming the family you are going to pay for it.

Michael Thomas May 4, 2010 at 9:08 am

Don’t worry about the witnesses on the back of the driver’s licence. The only function of an organ donor card is to let your family know that you want to donate organs. I regularly tell my family that I don’t want to be embalmed (against the probability that it will happen anyway), they just listen to the request an go on with their normal day. It doesn’t make it awkward.

Your family will make the decision, if the hospital asks, they will ask the next of kin if you are an organ donor. The nice heart on the driver’s licence is just a way to infer intent from the deceased.

Alex Tabarrok May 4, 2010 at 9:13 am

Yes, Brazil switched back to opt-in. Typo corrected, thanks Dan.

William May 4, 2010 at 10:00 am

“An online experiment independently demonstrated that people tend to follow the default rule. Americans were asked to assume they had just moved into a new state where the default was to be an organ donor and were given the choice to confirm or change this status. Another group was asked the same question, but the status quo was not to be a donor; a third group was required to make a choice without a default. Even in this hypothetical situation, in which sticking with the default took exactly as much effort as departing from it, the default made a difference. When people had to opt out, more than 80 percent were happy with their status as donors – a slightly higher proportion than arose with the no-default vote. Yet when people had to opt in, only half as many said they would change their status to become donors.”

Gerd Gigerenzer, Gut Feelings.

Do not underestimate the effect that framing a question or choice can have.

US May 4, 2010 at 10:11 am

Most people here probably already know this, but in case there are some who don’t: It is not unproblematic to just add the two variables in the graph in order to get a measure of ‘total donations’, something one might be tempted to do when looking at the graph. Transplant organs from live donors on average last a lot longer than organs from people who are deceased.

Kieran May 4, 2010 at 10:24 am

The default-choice “nudge” stuff is fine as far as it goes — it will raise the number of people who express a willingness to be donor. But the logistics and management of procurement are very much more important to the actual donation rate than the abstract expression of intent at some point in the past. In nearly all nominally presumed-consent countries, higher donation rates are not a direct consequence of physicians being empowered to say to bereaved families “tough luck, you have no say”. Nevertheless, some American and British advocates of presumed consent continue to mistakenly believe that presumed consent countries owe their success to the elimination of the family from the process. “Presumed consent countries” do perform a little better on average, but that is because having a Presumed Consent law is correlated with better and more effective investment in the infrastructure and management of organ procurement, not because doctors have a law that lets them ignore family objections. (This confounding is often present from the get-go, as with the recent UK proposal to introduce presumed consent — it was announced together with a proposal to simultaneously expand funding for procurement teams and their training, etc.) The most likely benefit of presumed consent legislation per se is long-term one, as a signal about the social norms surrounding donation. Implementing a straightforward presumed-consent law (with no kin veto) in the U.S. would be a policy disaster, I think, and prompt a big backlash. America is not Austria.

Bill May 4, 2010 at 10:40 am

Kieran,

Israel just enacted a presumed consent law (w/opt out) which provides that if you consent to your organs being donated, you and your family move up in the line for transplants. Do you think there would be an American backlash to this rule?

Bill May 4, 2010 at 10:54 am

Kieran,

Here is some further information on Israel and links:

http://nudges.org/tag/organ-donation/

Andrew May 4, 2010 at 11:18 am

Again, why are organs the only barter-only good.

My Federal Reserve Notes state: “This Note is Legal Tender for ALL Debts, Public and Private.”

Right Wing-Nut May 4, 2010 at 11:33 am

There is no general requirement in the US (or the several States) to embalm. My request (and it IS a request) is to be put in a cardboard box within 24 hours of death & stuck in the ground.

I remain very VERY concerned about end-of-life care as it relates to organ donation. This is a much bigger potential problem in developed countries because of the expense of the technology we have developed to sustain life there.

I also note the opposition to receiving donations among nurses who work in the field. I remain strongly skeptical that organ transplants are a net good.

I’m open to being convinced about live kidney donations. I remain very concerned about perverse effects, especially the empire effect.

John Faben May 4, 2010 at 11:52 am

Am I reading that chart right? Somewhere between 20 and 25% of Americans donate a kidney at some point during their life? at some point in the nine years from 2000-2008? Or does ‘rate’ mean something different to that?

(I can’t figure out what ‘mean rates per million pop.’ is supposed to mean).

Andrew May 4, 2010 at 11:55 am

(some people have binary minds)

Rahul May 4, 2010 at 12:12 pm

I feel the plot doesn’t have the best choice of axes variables. It would make more sense to report “organ donations per million deaths” rather than “prgan donations per million population”.

The current metric penalizes the nations with a larger young population. I wonder if the plot would look different if we normalized for that factor.

Any idea where the original data is from? Could be a fun hour of re-plotting…

Chris W. May 4, 2010 at 1:57 pm

The discussions so far miss a very simple point: if there is the surgical and pharmaceutical capacity for the health system to perform and maintain a transplant, and if there is a waiting list for cadaver-only (heart, etc.) organs, every viable organ for which donation is denied represents an additional death.

Opt-out, presumed consent donation assumes, quite reasonably, that few people will wish to become a murderer (perhaps multiple murderer) upon their death. Those that do have that wish are accomodated.

Systems where an organ donor’s card must be filled out, and where the donor’s wishes can be over-ruled, are in this perspective obscene (not to mention inefficient).

Bill May 4, 2010 at 4:49 pm

If they don’t ask your consent,

And you can’t sell,

Then the motto is:

Don’t Ask

Don’t Sell.

Burma Shave.

Yancey Ward May 4, 2010 at 6:03 pm

Opir,

True, then we only have to worry about foreclosure on replacement organs. Someone should make a movie on this theme.

Dextrology May 5, 2010 at 3:20 am

Hey, Dan Ariely talks about the same thing in this video
http://www.youtube.com/watch?v=9X68dm92HVI

Caroline May 12, 2010 at 6:10 pm

@Yancey Ward – it’s been done.

http://en.wikipedia.org/wiki/Repo!_The_Genetic_Opera

Anni Nominous June 4, 2010 at 12:25 am

The law in every country today forbids selling organs, whether from living or dead people. (There are a few isolated exceptions, including blood and blood plasma.) The bizarre principle seems to be that everybody is allowed to benefit from the donation except the person who makes the sacrifice. The patient benefits, the doctor benefits, the hospital benefits. But if the donor benefits, that is somehow considered unethical.

In my opinion this is both bad ethics and bad policy. Ethically, someone who donates an organ, or agrees to make one available after his death, certainly deserves recompense. From a policy point of view, there is generally a shortage of organ donors, and providing recompense would increase the supply and save innumerable lives.

I don’t agree with the ban, I feel it only creates underground channels. People will do what is most important to them…if proper channels aren’t available they will be made in some form or another.You cant stop necessity. There are also monetary forms of compensation that don’t break any laws, you just have to be smarter than Uncle Sam. I’m a healthy, athletic 35 yr old white male willing to give for compensation. I exercise, don’t drink or smoke and have no family history of any illness or disease. I’m type O-. I live in Denver. 05/03/2010 scojennn@gmail. com

liuhan July 12, 2010 at 10:22 pm

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AnnaDorota55 February 3, 2011 at 3:40 pm

This is a sensitive subject for most of the families. Donating organs is not as easy as choosing to donate car parts, for example. Maybe a campaign to become more conscious would be effective.

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