Opt-Out Organ Donation in the U.K.?

by Kieran Healy on January 14, 2008

The BBC reports that a change may be in the offing in Britain’s policies on cadaveric organ donation:

Gordon Brown says he wants a national debate on whether to change the system of organ donation. He believes thousands of lives would be saved if everyone was automatically placed on the donor register. It would mean that, unless people opted out of the register or family members objected, hospitals would be allowed to use their organs for transplants. But some critics say the state should not automatically decide what happens to people’s bodies after they die. Currently there are more than 8,000 people waiting for organ transplants in the UK – a figure which rises by about 8% a year. Writing in the Sunday Telegraph newspaper, the prime minister said a system of “presumed consent” could make a huge difference. … The system already operates in several other European countries and has boosted the number of organs available for transplant.

My view is that Gordon Brown is wrong, but not for the reasons you might think.

The claim that “presumed consent” systems perform better than “informed consent” systems is not well supported empirically. If you look at cadaveric organ procurement rates in the OECD over the past 12 years or so, we find that presumed-consent systems do in fact perform better on average than informed-consent systems. The question is why they do so. Debate in this area is dominated by bioethicists, economists and lawyers. A consequence of this is that—thanks to the disciplinary interests and biases of these groups—the organizational and institutional machinery required to make something as complex as cadaveric donation happen tends to drop away in debates, and is replaced by considerations of the ethical implications of this or that policy in general (e.g., concerning consent) or arguments about the effect of this or that incentive or rule on individuals (e.g., concerning financial incentives or a legal regulation). But the organizations matter because they manage the logistics of procurement, and this is a very complex process. How a change in the law is implemented in practice, or how a rule is embedded in organizational process, can greatly affect the outcomes. This is more a question of organizational and institutional sociology.

Advocates for presumed consent say that most people support donation anyway and it is only a failure to record their wishes, or the meddling intervention of next-of-kin, which prevents that preference from being carried out after their deaths. However, it turns out that most OECD countries with a nominally presumed consent system also allow for a de facto next-of-kin veto on procurement. (The exceptions are Austria and, to a lesser degree, Belgium.) So things are not so straightforward. Nevertheless, presumed consent countries do a bit better on average. The question is, why?

Here’s a chart showing the average increase in the procurement rate for a number of presumed- and informed-consent countries between 1990 and 2002. The dots represent the difference between the average procurement rate between 1990-1994 and 1998-2002. You can see right away that while most countries (regardless their consent rule) showed modest growth between the two time periods, the increase in Spain and (especially) Italy is much larger. These changes were not brought about through changes in the law, but rather through investment in the organizational underpinnings of the procurement system. Reform of the rules governing consent is often accompanied by an overhaul and improvement of the logistical system, and it is this—not the letter of the law—that makes a difference. Cadaveric organ procurement is an intense, time-sensitive and very fluid process that requires a great deal of co-ordination and management. Countries that invest in that layer of the system do better than others, regardless of the rules about presumed and informed consent.

And, indeed, the BBC report notes—in passing!—that the Task Force recommending the switch to presumed consent laws also recommends that twice as many transplant co-ordinators be hired and that specialized 24-hour transplant teams be set up. These are the changes that will really make a difference. I think that the main effect of a change in the law, if it happens, will be as a public signal to prospective donors (and their next of kin) that the socially accepted default option on donation has shifted from “Ask permission” to “You have to object.” But I will be very surprised if medical teams in the UK feel they can disregard the wishes of next-of-kin who strenuously object to organ procurement.

An organizational perspective on the procurement system is less common than you might think. Instead, debate focuses on the ins and outs of hypotheticals about consent, the wishes of individuals, and so on. Discussion threads tend to focus on cases where particular individual cases meet abstract principles of rights or ethics. But in practice this kind of thing doesn’t happen at all without a tremendous amount of organizational work, and most of the variation we observe in cadaveric procurement rates is less a consequence of general legal frameworks and more the result of material differences in the short-run logistical work and long-run cultural effort of procurement organizations.

If you’re interested in this stuff, I make this general argument at greater length (and with more data) in this paper, and also in

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01.22.08 at 5:54 pm

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1

novakant 01.15.08 at 12:51 am

Interesting post, it’s late and I have nothing to say, but would like to note that a group of renowned British thinkers have dealt with this subject at length 25 years ago (warning, only if you have a strong stomach or sick sense of humour).

2

conchis 01.15.08 at 2:06 am

Very interesting piece. Thanks for this.

With apologies for not reading the paper, I have a couple of quick questions.

(a) Why the focus on increases rather than absolute donation rates? I would have thought the latter more relevant. Is this naive for some reason?

(b) You state that “Countries that invest in that layer of the system do better than others, regardless of the rules about presumed and informed consent.” Are there any countries that have made such investments in this without also having a presumed consent system? And if not, is there a potential argument that both may be necessary to see the sorts of results that Spain and Italy have got? (The graph hints that the US might be relevant here, but you don’t mention it. So I’m not sure.)

3

Jordan DeLange 01.15.08 at 2:31 am

It seems from the paper that nearly all the countries you evaluated allow relatives to veto donation, so few countries appear to be presumed consent countries in the strong sense. Even if organizational factors play the greatest role in influencing organ procurement rates, wouldn’t you expect countries that actually implemented strong presumed consent (in practice, as well as in law) to have substantially higher organ procurement rates relative to the same level of organizational investment? Or would such a system negatively impact the organizational and logistical factors at play?

4

Glen Tomkins 01.15.08 at 3:24 am

Don’t the two go hand in hand?

It seems to me that part of getting serious about the logistics of delivering donor organs in a timely manner to, as much as possible, meet the volume of need, is getting the consent issue on a firmer footing. You obviously can’t even start procurement until you have consent. Trauma victims tend to be the best donors on technical grounds, and they cannot, almost by definition, be consulted about their wishes by the time they are the victims of fatal trauma. Relatives are often not reachable for consent in a timely manner, and even when they are, this is obviously a fraught time to distract them with any issue beyond their loss. So forcing the question for everyone well before they unexpectedly become victims of fatal trauma, is an obvious and necessary part of procuring an adequate, predictable, stream of donor organs.

Why separate the logistics from the ethics, and claim that one, and not the other, is the true cause of higher rates of procurement?

5

harry b 01.15.08 at 3:39 am

Why would you be very surprised if medical teams in the UK feel they can disregard the wishes of next-of-kin who strenuously object to organ procurement? If the rule goes through, I wouldn’t be surprised at all, because there is a pretty strong cultural norm in the UK health system of abiding by the demands/wishes of the patient themselves (except, perhaps, when there are confusing cultural issues with immigrants etc). Surely this is something that varies across countries and health systems.

6

Kieran Healy 01.15.08 at 4:01 am

Why the focus on increases rather than absolute donation rates? I would have thought the latter more relevant.

The paper looks at absolute over-time trends as well. The purpose of highlighting the Spanish and Italian cases here was to show the kind of sustained change that can happen as a consequence of structural investment or reorganization, net of any change in the law.

Are there any countries that have made such investments in this without also having a presumed consent system?

A number of OPOs in the United States have done very well — approaching consent rates that are close to the approximate level of support for donation in the general population.

Why separate the logistics from the ethics, and claim that one, and not the other, is the true cause of higher rates of procurement?

In part just as a matter of rhetoric, to redress a strong imbalance in current debate about procurement, which emphasizes very strongly a kind of idealized debate about consent, and attributes successes in other countries entirely to changes in the law governing consent rather than to the organizational changes that often go with them. E.g., “The Spanish Model” is often cited in policy debates as an ideal (and one that Italy has followed), and its high rate of procurement is attributed to its presumed consent laws. But Spain has been a presumed consent country since the 80s and it and Italy’s strong growth in procurement rates is not due to that law as such.

It’s not that I hold any particular brief for informed consent as such, btw. Neither do I think the law has no effect, as I discuss in the paper. Rather, the research is about seeing that a stylized fact about consent systems and procurement rates is not really true.

Surely this is something that varies across countries and health systems.

Yes, it is — I wrote this quite quickly and would now probably prefer to say that if this law was passed without any logistical reform (including training for procurement co-ordinators), you won’t see much in the way of an increase in donation rates. The law could specify presumed consent but a botched implementation might still lead to no improvement or an actual decline. But I’m not claiming special knowledge about the UK medical system and its attitudes to consent tout court here.

7

derrida derider 01.15.08 at 4:36 am

How a change in the law is implemented in practice, or how a rule is embedded in organizational process, can greatly affect the outcomes.

A point that is valid across a very wide range of social policy, one experienced policy analysts and administrators know by chastening experience, and one that is often neglected by academic social scientists.

Having said that, I agree with Glen – presumed consent and organisational improvements are complements, not substitutes. Doing both together is the best way get a decent boost in donation rates.

I also think that more widespread donation may itself have a “tipping point” effect through cultural change. Objections from next of kin will then become rarer, and such objections will in any case be less respected.

8

Jon H 01.15.08 at 4:47 am

It might be interesting to have data on organs which were donated but only after permission-seeking caused a sufficient delay that the organ became unusable before it could be transplanted.

9

john b 01.15.08 at 10:21 am

“Why would you be very surprised if medical teams in the UK feel they can disregard the wishes of next-of-kin who strenuously object to organ procurement?”

I can’t speak for Kieran, but I’d be rather surprised by this because Brown has stated that under any new system, medical teams would remain bound by the wishes of the dead person’s next of kin…

10

GreatZamfir 01.15.08 at 10:40 am

Kieran, can you tell us how these countries compare on an absolute (per capita) basis? Especially Spain and Italy, whose growth rates could just as well be the result of low donations in the early period as of high amounts of donations now.

Also, you graphs suggest that several countries, suc as the Netherlands, Australia and Sweden have seen a serious decline in organ donations. Are there common explanations for this?

All in all a very interesting piece, thank you

11

Ginger Yellow 01.15.08 at 11:45 am

I’ve often wondered what the effect would be if you scrapped next of kin consent but didn’t switch to presumed consent. I find it outrageous that my own wishes to donate can be countermanded by my family, even though I don’t expect them to do so.

12

Tim Worstall 01.15.08 at 12:34 pm

Would be interesting if we actually looked at a country which has solved the kidney shortage entirely. Sure, this doesn’t work with hearts etc, but it does with kidneys.
Iran. No shortage of kidneys and a (highly regulated) market, with State compensation to those who make a live donation.
Worth a thought perhaps?

13

Nick 01.15.08 at 1:55 pm

To what extent is the increase in organ procurement in Italy, a reaction to the donation of Nicholas Green’s organs in 1994? The internet seems to think that event alone had a very dramatic effect on Italians’ attitudes towards organ donation.

14

Kieran Healy 01.15.08 at 3:09 pm

Kieran, can you tell us how these countries compare on an absolute (per capita) basis? Especially Spain and Italy, whose growth rates could just as well be the result of low donations in the early period as of high amounts of donations now.

Sure, You can see the time series here. Informed consent countries are on the top row; presumed consent countries on the bottom. They’re arranged within each row from lowest on average to highest. You can see that Spain has always been at the high end (and growing) while Italy started off near the very bottom and grew rapidly to end up in the middle of the distribution.

15

Kieran Healy 01.15.08 at 3:13 pm

To what extent is the increase in organ procurement in Italy, a reaction to the donation of Nicholas Green’s organs in 1994?

I have data on provincial rates of donation in Italy for 1998-2004 and over that period there has been a lot of growth, though it has been unevenly distributed across northern, central and southern regions. The south has pretty low rates and not much growth.

16

Matthew Kuzma 01.15.08 at 6:46 pm

I would also like to point out that this statement is totally ludicrous:

But some critics say the state should not automatically decide what happens to people’s bodies after they die.

The decision about whether or not to donate needs to happen fairly prompty or it is rendered irrelevant by natural decay processes, so assuming non-consent is in fact “automatically decid[ing] what happens to people’s bodies after they die.”

The decision to do nothing is still a decision.

17

leederick 01.15.08 at 8:58 pm

Is there a weird semantic thing going on when people talk about an opt-out system of organ donation? Is it really a donation if someone takes something from you without you having expressed an opinion on the topic? I’m not commenting on the merits of the scheme, just the language.

I thought the post was excellent by the way.

18

Matthew Kuzma 01.15.08 at 9:11 pm

Okay, I just thought of something. I appreciate your statistical analysis, and maybe you address this in the paper, but is it possible that the effects of consent laws interact nonlinearly with investments in infrastructure?

Specifically, I’m thinking that if you improve logistical capabilities you ensure that a greater number of potential donor organs actually find recipients before they spoil, but changing the consent law makes a great many more organs available for transplant. If your logistical structure is already operating at near-capacity, increasing the number of available donor organs won’t do much to improve transplant rates, but if a country were in a situation where nearly 100% of donor organs were reaching recipients, increasing the supply of organs would actually have a significant effect, especially if they increase investment in the logistical side of things so it can expand.

So it’s actually an issue of determining where the bottleneck is. Fact or crap?

19

nick s 01.15.08 at 10:30 pm

(The graph hints that the US might be relevant here, but you don’t mention it. So I’m not sure.)

I suspect it’s because many states now combine the process with one’s application for a driver’s license. (It’s generally indicated on the license whether you’ve consented.)

Having someone at the DMV ask you whether you’d like to be a donor is different from the British practice — at least, when I did it [mumble] years ago — of picking up a donor card from a tray at the post office counter. It’s also a non-medical setting, which may prompt a different response rate from a medical setting. That’s to say, when the DMV official asks, you may well think of the consequences of being in a car accident, whereas being asked at the doctor’s surgery might lead you to believe that you’re being sized up as a bag of organs.

20

Ben Hippen 01.16.08 at 12:16 pm

Thanks, Kieran, for the post.

Tim #12, and other interested parties:

I’ve written an essay, forthcoming from the Cato Institute, on the Iranian system of organ procurement. I’ll also be speaking at Cato on Feb 21, alongside a critic or two, on the same subject.

The short version: Iran has permitted the sale of kidneys between nationals (only) from living vendors (rather than ‘donors’) since 1987, and the waiting list for kidneys was eliminated in 1997. Long-term recipient outcomes (i.e. 10+ years) for recipients of purchased kidneys is comparable to outcomes from recipients of conventionally donated kidneys, and outcomes for both are favorably comparable to recipient outcomes in the U.S. This is of interest, because reports of outcomes for both vendors and recipients who participate in grey-market, cross-border organ trafficking are horrendous.

One salient problem with the Iranian system is that long-term outcomes for vendors are simply not known, and vendors tend to disproportionately come from the impoverished classes. The majority of organ vendors fall below the Iranian poverty line of < U.S. $5 a month.

The long version is better. I’d be pleased to provide a copy (once published) offline to anyone interested.

21

Daniel Goldberg 01.16.08 at 9:07 pm

22

Mikhail 01.18.08 at 1:02 am

Great post and an important issue.

However, I’m afraid of how it’ll actually be executed if approved…

The problem is – UK does not exactly have a good record when it comes to dealing with sensitive data. Either storing it or using it. :) Just look at all the recent cock ups with DVLA, Home Office and NHS losing anywhere from tens to hundreds of thousands of records. Or the Home Office having illegal immigrants working security! (You’d think they’d be able to check that…)

So, what if the presumed consent approach is instituted but misused? Shouldn’t that result in criminal proceedings against medical teams for using organs when they shouldn’t have? Which of course would not happen since apparently no amount of misdoing can lead to prosecution in the UK. :) Recent examples would be the cash for honours case and the Northern Rock bank debacle – the managements must so be sued over that, but they said they are sorry and just got a slap on the wrist. But I’m digressing. The current system of informed consent works to protect both the dead person and the medical staff – you have to definitely establish the consent. If you don’t have to do that anymore, that opens up room for mistakes. And who is going to deal/pay for that?

23

Patricia 01.19.08 at 10:21 pm

Hello Mr. Healy,

NIce and interesting post. I am working on this matter and I would be pleased if you could tell me any data source about organ donor per country in the internet. Thank you very much.

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