Presumed Consent in Wales Falls Short

In 2003, Johnson and Goldstein published what would become a famous paper in Science, Do Defaults Save Lives? The paper featured a graph which showed organ donor consent rates in opt-in countries versus those in opt-out countries. The graph is striking because it seems to suggest that a simple change in the default rule can create a massive change in organ donor rates and thus save thousands of lives.

The graph, however, does NOT show organ donor rates. It shows that in opt-in countries few people explicitly opt-in and in presumed consent countries few people explicitly opt-out. But when a potential organ donor dies the families of people in opt-in countries who did not opt-in are still asked whether they would like to donate their loved one’s organs and many of them say yes. Similarly, in the presumed consent countries the families of people who did not opt-out are still typically asked whether they would like to donate their loved one’s organs and some of them say no.

The actual difference in organ donation rates between opt-in and presumed consent countries is much smaller than the differences in the graph, as Johnson and Goldstein made clear later in their paper. Nevertheless, the simple story in the graph encouraged many people to put excess weight on presumed consent as the solution to low organ donor rates.

The best estimates of presumed consent suggested that switching to presumed consent might increase organ donor rates by 25%. 25% isn’t bad! But we don’t have many examples of countries that have switched from one system to another so that estimate should be taken with a grain of salt.

The latest evidence comes form Wales which switched to presumed-consent in 2013. Unfortunately, there has been no increase in donation rates.

The most significant analysis of the new system is the Impact Evaluation Report, released by the Welsh Government in November 2017. Whilst focusing on the positives, such as increased understanding among medical staff, the report cannot escape the donation statistics, which clearly show no improvement. Covering the period from January 2010 or January 2011 to September 2017, all donation data show no change since the legislation’s introduction. The 21-month period before the Act came into effect saw 101 deceased donors, whereas the same period after showed 104; an increase, but one that can be properly attributed to expected annual fluctuation.

I still favor presumed consent or better, mandated choice, but I don’t think the binding constraints on organ donation are default rules. More important are preferences and fears about donation, the existence of a professional system using people who are trained to ask for donations, an institutional organization that can use donations when they are available (minimizing waste), and, of course, incentives.

Hat tip: Frank McCormick.

Comments

The real problem is the belief in all Abrahamic countries in the parousia, the day of the Last Judgment on Earth when the dead will resurrect. Many families do not want their dead to miss an organ if it happens.

Is this "the real problem"? How widespread are these views? Any evidence you can point to?

Christian denominations (with very few minor exceptions) support organ donation as an act of charity. I don't know much about Judaism or Islam on this issue, but from what I can find easily, it appears most leaders in those religions also support organ donation. None of these religions believe that if you are missing an organ (or your body is otherwise less than perfect when you die) that it will be a problem in the resurrection.

It may be that there are popular religious views that diverge from that of the leadership. However, that isn't obvious to me (and I haven't ever encountered such views as a Christian).

Ah. So religion is the problem.

The same thought occurred to me. On the other hand, few Christians understand that resurrection of the body occurs at the end of time; no, grandma is not in heaven with grandpa, she is waiting some where for the end of time. A priest speaking at a funeral I attended several years ago had an interesting take on this: according to him, it's not the old and ugly 90 year old body that will be resurrected, but the trim and attractive 35 year old body. Presumably with all the organs intact. So go ahead and donate your organs, it won't matter at the end of time.

I'm not a fan of mandatory anything. I would prefer informed consent to forced consent.

Why would this be the issue? Wales is not a particularly Christian place. Japan, for instance, has abysmal organ donation rate in spite of a lack of Abrahamic religion. South Korea, which is massively more Abrahamic but still east Asian and comparable development has 8 times the organ donation rate of Japan. The US rate is triple that of South Korea.

I have trouble blaming religion when the dose response is 180 degrees the other way.

Americans have high rates of donation because they are obese. Its easy to donate a stomach when there's so much of it.

Saudi Arabia is massively more Abrahamic than Japan. But I'd rather be in Tokyo eating chopped sushi than be in Mecca becoming chopped sushi.

And yet for all the backwardness of KSA, their organ donation rates are over treble those of Japan.

China, Vietnam, Thailand ... pretty much everywhere that is not Abrahamic has the lowest donation rates in the world. Even within Europe the least religious states, e.g. the Czech Republic, have lower donation rates.

"We didn't find an effect in our study based on a small sample size" is not the same as "there is no effect".

With a sample of only 101 in the "before" period, I don't think the study was sufficiently powered even to detect the expected 25% increase.

My wife was a transplant technician for a number of years and obtained consent before obtaining tissue. The family ultimately decides. The checkbox on your Drivers License has no authoritative value, though it can be used to remind your family of what your wishes are.

In the US it is state dependent. In GA the checkbox IS authoritative and can be used to override family wishes. In practice if the family is vehemently opposed it does not occur.

'and, of course, incentives'

Cash incentives, to be more plain about it.

Absolutely. The hospital and all the medical professionals performing the transplants are paid extremely well while the donor's family gets nothing. And I'm pretty certain that, on average, the donors and their families are a LOT less wealthy than the medical pros (and probably poorer than the recipients as well). If payments were allowed, no only would a lot more people on transplant lists get organs, but it would be move toward economic fairness besides.

When the family member has died, it could probably be structured as "help with the funeral arrangements" to reduce the repugnance a bit. (The problem then if the program is universal is ensuring that it doesn't all just go to funeral directors raising prices.)

Cash incentives for the poor to sell organs to the rich, in case that was not clear.

After all, just because a highway like Rt 66 was built using tax money is no reason that the wealthy cannot pay a higher toll to speed themselves to their destination, as the time of the wealthy is per apparent definition more valuable than the time of an average taxpayer.

The same applies to body parts, if one wishes to believe that a healthy kidney is just wasted in the body of an 18 year old poor person who really needs the cash.

"Cash incentives for the poor to sell organs to the rich, in case that was not clear."

No. Cash incentives for families of deceased donors to sell organs to medical providers/insurance companies just as we use cash incentives to induce surgeons to sell their services to the same.

It is actually worse than this in terms of the argument that we can't "sell" organs. Yes, the major organs (heart, lungs, kidneys, liver, pancreas) are given to the donor networks for distribution gratis but when you say "OK" to organ donation, you are also agreeing to "tissue" donation. These tissues (corneas, skin, bone, fascia, sometimes blood vessels) are sold to private companies for processing and resold for huge mark-ups back to the hospitals. If Lifecell (the company who processes tissue for Alloderm acellular dermis) can make money on my skin they sure as hell can pay my family for it. Therefore I am not an organ donor on my DL (which is authoritative in GA) but my family knows that I want to donate solid organs but no tissues unless they can be reimbursed (which they can't).

Not too early to revisit what we mean today when we say or write "saving lives".

Lives are NEVER saved: "miracle science" interventions only extend life and extend it only briefly.

(Once the 300th anniversary of the publication of Swift's Gulliver's Travels arrives, we can begin appreciating anew the advances of medical science over the period that still leave us facing the dread existential circumstance of aged Struldbrugs, should our lives have been "saved".)

Institutional science--not even its disciplines devoted to biology and medicine--has never "saved lives" considering its steadfast commitments to demonstrating the numerous ways our technologies and sciences are lethal and ready to kill human beings as readily as any other pathogen on this planet.

What we know (or think we know) is that only information and a complex stew of mass-energy-momentum-density are "saved" (conserved). Using the term for anything else is subject to the same (silly) objection. Even those two 'things' are conserved only during the time since the big bang (or technically, the Creation Event, since the Big Bang followed that) and until the (unknown) End of the Universe (the big freeze/the big rip).

This is a dumb straw man argument.

If you prevent death from occurring at a particular time, you have saved a life in the plain English meaning of those words. Nothing about the phrase "save lives" must imply stopping people from ever experiencing death, and it's obvious that this is not the intended meaning of the phrase (in a medical context, anyway).

No, this is no "dumb straw man argument": instead, it only suggests that not even medical scientists want to concede the limits of their glorious and "miraculous" sciences, since they refuse to conform their linguistic usage to the standards of their own glorious and "miraculous" science.

Science continues to use language to cheat in terms of public discourse, and academics themselves are pleased to assist whenever possible.

No, the language doesn't mean what you are claiming it means.

Your reply does suggest that entire volumes dedicated to "the academic captivity of the American mind" remain to be written and published.

No, he's right, your arguments are bizarre both in wording and in point.

"Lives are NEVER saved"

As Edward Burke and Will point out, that's a pedantic and dumb argument. You might as well tell hockey or soccer goalkeepers that

"Goals are NEVER saved"

Because eventually the offense will score, if not in that game then in the next one.

Saves by keepers/goalies are real, as are lives saved. Temporary sure, but real.

Then I suppose murder isn't really such a big deal, since it merely hastens the inevitable.

I represented a founder (a physician) of an organ transplant company. I never got used to the term "harvest", but that's what they did, harvest organs. Maybe we are looking at this all wrong, that the more important donations would be by those who aren't healthy so the living can study the dead for clues as to why. But nobody wants a diseased body. Grave robbers, perhaps, but not those who make fortunes transplanting organs "harvested" from the otherwise healthy deceased. Do we learn more from those died young, or those who died old? Do we learn more from economic failure, or economic success?

It's very hard to explain this to lefties like Alex, but your body does not belong to the State. The State does not get to seize it upon death by default.

The usual and predictable "but but but I promise everything will become better" pleas do not change that.

It's hard to explain this to...whatever you are, but economists think in terms of efficiency. I'm quite sure Alex understands the binding constraints of law and liberty.

To an economist, taking good organs to the grave is a horrendous waste. Of course, it would also be efficient to render the remains and sell them as food.

Morality, law, and custom shouldn't stop economists from conducting positive analysis. At the very least, we learn how much we are losing. This informs policy. It also informs personal decisions.

You're still wrong because something something lefties something something triggered

The ends justify the means, right? I must be old fashioned since I see such presumption as a moral and ethical evil. Same with presumptive 401(k)`s. Logically, shouldn't any and all irrational choice be subject to the same rationality? Shouldn't big government tell us which car to buy, or the best color to paint our homes? Erosion of personal rights, personal freedoms, personal dignity, personal choice. We should be calling our government Mama.

The libertarian argument against presumptive defaults sounds a bit thin and shrill tome. It's underlying premise appears to be "I'm being oppressed because I'm too lazy to check the other option on the form".

I do think this can be abusive, though. I don't think it's right to 'default' people in to things that have no context to their day to day life. For example, if you take a new job there's all sorts of decisions to make about 401K's, health care, and other options. On the other hand if you've kept the same cell phone plan for years I don't think it's right for the company to 'default upgrade' you out of the blue

The problem I have with the government doing the defaulting is that it feeds an unfortunate paranoia among psychiatric patients - that medical care will result in them being euthanized for nefarious purposes (organ donations being a common part of the psychosis). Explaining organ donation to competent individuals is hard enough now. Explaining it to minimally functional patients (i.e. ones that are just barely to maintain competency) with words like "presumed", "mandatory" and the like in the mix is far worse than saying "whatever you want".

Even among the non-psychotic patient population, it is common enough for people to have screwy beliefs about organ donation that I would need to see some real positive evidence of QALY gain to want to risk a large minority of patients refusing medical care out of fear of having their organs harvested through misunderstanding.

As always, policies will have their biggest impact not on highly competent individuals but on those least competent. Without evidence of a substantial gain from "opt-out"; primum non nocere.

My impression is that the 'opt in default' comes with issuing drivers' licenses...at least in the US. I've never seen the question asked of people who check into hospitals.

It is not asked of them, but I routinely have psychotic patients who come in for various reasons (e.g. GSW, substance intoxication, severe gastroenteritis) when they the EMTs do not think they are competent enough to refuse treatment. They believe that I intend to kill them and harvest their organs.

Thus they refuse treatment. However, their competency to exercise medical discernment is rarely obvious. This either requires a full competency evaluation which they may or may not pass (the latter option being reasonably expensive and paperwork intensive) or I get to bargain (e.g. no CT scan to make sure the GSW is clean, but just let me clean it and bandage it ... and yes I will do it without pain killers so you do not lose consciousness).

Making it "mandatory" is only going to feed this psychosis. This means that more of the marginally competent individuals are going to be more resistant to treatment. Most of the time this won't kill them and the net expenses to the system will only be in the millions. But if all these schemes do not, you know actually deliver more organs - why the hell bother?

I do not think we should make life harder for the most vulnerable members of society just to make wealthy people happier that we have a more "rational" system. If it actually has evidence of QALY gain then we can talk, but with results like provided from Wales, primum non nocere.

Do they have this obsession outside of the medical setting? If so it seems even just asking them to opt in may feed it leaving society unable to do anything to actively encourage donation.. A person suffering a mental break who refuses treatment may or may not be in danger of their life but we know the lack of donations does cause deaths.

Depends on what you mean. Psychosis very often gets worse with organic injury. They may have some delusions, but are more functional most of the time ... but when they spike a fever, drop/raise BP, or undergo some other change their psychosis worsens. One particularly common and bad mechanism is that some of them are medicated (by prescribed meds or recreational drugs) that help them maintain functionality; they develop gastroenteritis and they either vomit their meds up or have them pass too quickly through the intestines to get proper absorption. This can result in moderately well controlled pyschosis becoming uncontrolled.

I see a lot of people on the worst days of their lives - people they love may have been shot to death, they be deathly ill, etc. This means that their psychoses are often much stronger than on other days. Right now if they start going on about euthanasia and organ harvesting I just tell them that the former is illegal in this state and the latter is completely optional. I know a doc who likes to use a form indicating burial or cremation instructions so they can sign a "legally binding document" that prevents organ harvesting.

Also, remember that the homeless and the mentally ill, often the same persons, are the single most likely source of a new epidemic. When they refuse care with fun GI bugs, they may well spread it to a bus, subway car ... or every other patient in the ED. If they refuse treatment with inadequate antibiotic administration (e.g. they get freaked and leave AMA with only half a dose of Vanc in them), fester, and then come back medically incompetent when I can complete the Vanc ... well we just risked the lives of grandmothers, nurses, and babies.

I am willing to accept the harm to these patients and those exposed to them for sufficient progress on organ donation rates. But if you can't show me more organs, why the hell are we doing this?

I don't know how so many people misunderstood the "mandatory choice" thing so badly.

I am amazed more people don't. The world is full of people who try to hold up gun stores with baseball bats, who try to sell heroine to uniformed police officers, and who think they can cure AIDS by sleeping with a virgin ... and those are not even the psychotic ones.

The truth is America has never been more segregated by intellect than it is today. If you are above average at understanding things, the bottom 10% of the population will literally never cross your path unless you actively go looking for them (e.g. you become a public defender or a physician).

Add in copious amounts of mind altering substances and I assure you there are many, many such people.

Exactly just like the silly people who insist they are being oppressed because they are too lazy to check a few boxes and get a driver's license before they vote. I'm glad to have you aboard the voter integrity movement. And here I thought you'd be a hypocrite about it.

Why does a voter have integrity because they got a drivers license? Also your thinking is backwards. Voters who lack integrity still get the vote just as free speech applies to idiots as well as geniuses.

The vote has integrity (no matter what the vote is) because it's been identified to be from a legitimate source.

I have no problem applying the standard you would apply to gun control to voter legitimacy control Show me a proposal that passes a cost benefit test and I'll go for it. Since the President's own commission couldn't find a single illegitimate vote I think you have a bit of a high bar.

Nobody who refuses to put themselves on the organ transplant list today should be entitled to go on the organ recipient list should they need a transplant in the future.

The system should be opt-out and if you really don't like the idea of organ donation you should be allowed to take yourself out of the system.

As it stands now, thousands of people are dying every years because most people don't even consider the possibility of helping others with a post-mortem donation.

The real problem is the fear that your doctor will bump you off sooner if he knows that your organs will be donated to someone else. Who is not tempted by the wonderful gratification of cost-free generosity?

This proves only that people are lazy in the face of bureaucracy. This laziness is reinforced by the fact that the default choice is not actually binding.

Aside from laziness, another oft-observed effect is people's unwillingness to face death choices. As a financial advisor I have a difficult time getting many clients to write wills and powers of attorney, form trusts, and sign DNRs. And wealthy clients of financial advisors are MORE likely to do these things than the general population.

An interesting study would look at actual donation rates given the ability to sell one's organs upon death. (Cue Monty Python jokes)

Can we get presumed consent around sexual consent laws too?

You mean "can we retain it," right? The current status in most jurisdiction is presumed consent under most conditions unless someone says no. Affirmative consent is being push some places, though it has some downsides.

If woman is drunk, man gets charged with rape if courts think she wasn't capable of giving consent. Grossly unfair because it's not cut and dry.

How about "presumed consent" for taking someone's food? Like, you're allowed to eat off someone's plate in a restaurant if they don't put up a "not a food donor" sign; just help yourself to their fries until they tell you to stop! Look at all these studies I did about how it improves the rate of food-sharing with bums and tweekers!

Or we could just avoid the games and make organ usage a legally saleable right.

What a ridiculous straw man. Nobody is talking about taking organs away from healthy, living people.

We're only talking about donating organs from brain dead people or accident victims. Your analogy is absurd.

JWatts is right. My wife's a transplant surgeon and says that in reality, family trumps consent forms. So if you want to be a donor, make that clear to your family.

One more Nudge ^TM that turns out to be B.S.

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