Behavioural Insights

The Cabinet Office Behavioural Insight Team recently published preliminary results of a randomised control test looking at the effect of different messages on donor registration: their report can be found here (1.2MB pdf). They found that a message stressing reciprocity had the greatest effect on increasing registrations. Interestingly, putting a picture of a group of people alongside an appeal resulted in fewer registrations that a message without a picture.

Donor Registration on Facebook

I was interviewed on Facebook's drive to increase organ donation a couple of times by a Canadian journalist (the results can be found here and here).

I've just seen this report, suggesting that there did seem to be a boost in donation rates following the Facebook initiative. I've not read the actual academic article, but I assume the authors at least attempted to show causation, rather than mere correlation.

An Economist's Perspective

Economist Tim Harford considers some of the measures to increase organ procurement and suggests the importance of asking people to give their consent. (Thanks to Chris Bertram for directing me to this, on Twitter.)

I think Harford is right to say that many people, given the opportunity, will consent, so it's a good thing to ask people's views when, for instance, they apply for driving licences. It's unclear, however, whether this is sufficient to address the organ shortage. It's interesting that one reason he offers for 'rejecting presumed' is that it will not assure relatives of their loved one's wishes. As he asks, rhetorically, "If we fill our donor registry with auto-enrolled donors, will that really persuade distraught families to support transplants?"

This is all very well, but the unspoken assumption here is that family consent should be needed, along with that of individuals. Granted, perhaps in the opt-out system he was considering, this makes sense: the family should have the option to express an objection that the deceased may have had but never registered (a 'soft opt-out'). The danger, however, is that such systems potentially allow the family to override the wishes of the deceased. There have been a number of papers (for instance, this one) arguing that, even in an opt-out system, we ought not to consult the family: that the absence of objection from the deceased should be sufficient to license donation.

The appropriate role, if any, of families and next of kin is something we intend to explore in the next RSE Workshop.

UK Donor Increase

Organ donation is in the news today. Since the Organ Donation Taskforce, which reported in 2008, there's been a significant increase in the number of registered donors and, consequently, in the number of transplants performed.

This is welcome news, but it shouldn't blind us to the fact that demand still exceeds supply, with three people dying each day in the United Kingdom because of a lack of transplant organs (figure from the BBC article, linked above). It's important to consider ways in which we might continue to do even better, including for instance an opt-out system.

It's also notable that, according to the first article, "Last year, 125 families overruled an individual's intention to donate". The UK's present system allows relatives of the deceased to override his/her expressed wishes. Whether this is justifiable or not ought, I think, to be more debated. It's an issue that we intend to examine in the next RSE workshop.

Mixed Defaults

Since organ policy is a devolved matter, the Welsh Assembly has been pushing ahead with plans to switch to an opt-out policy. It emerged recently, however, that certain body parts - including hands, limbs, and faces - will not be included.

What does this mean? As far as I can see, it means that if you die without having registered any preferences over the use of your bodily remains, then your kidneys may be used but your hand may not be used. If you object to the use of your kidney, then you need to opt out of kidney donation. But if you're happy to have your hand used, then you need to opt in to hand donation. And, if for some reason, you're happy for your hand but not your kidney to be used, you need to opt in for hand donation and opt out of kidney donation.

There's no logical or principled reason why the default shouldn't take this mixed form but it seems to me to be undesirable in practice. Firstly, many people are now going to have to register preferences if they want their bodies treated according to their wishes (though this may not be such a bad thing). But it seems to invite potential confusion over what body parts will and will not be used and under what conditions.

Traditional opt in and opt out systems have a clear default: either everything will not be used or everything may be used (respectively). It's fair enough to allow individuals a choice over which parts to opt out or in, so that they can if they wish register as a kidney donor but not a hand donor. But I don't see the point of mixed defaults, which merely complicate and confuse the status quo.

Altruistic Donation

The UK's first altruistic liver transplant (that is, one from a live donor to a stranger) was performed last month. The unusual thing about the liver is that one can donate a liver lobe and then one's liver can re-grow so, unlike donating a kidney, one may be no worse off in the long term. In the short term, however, the donor may suffer as a result of the operation, which in this case took four hours and left a 6" scar, as well as the risk of infection and/or psychological problems. This pieces also highlights the risk of death: approximately 0.5%.

Given these costs, it's unsurprising that Dr Aluvihare - transplant specialist at King's College Hospital - is quoted as saying "I personally have some reservations about altruistic donations. I believe if we did everything we can to improve the supply of donations after death we wouldn't have a need for this type of donation". So the case for favouring posthumous donation isn't simply that people's organs are of little use to them after they die, but also that the costs of removing those organs are much lower.

Defeasible Refusals of Consent

It's a widely accepted view in medical ethics that doctors should not do anything to patients without their informed consent. (There are some exceptions, of course, for patients unable to consent, e.g. minors or the unconscious.) A patient's consent is not binding, because they cannot force a doctor to treat them, but their non-consent is, in the sense that if they refuse a treatment the doctor is not permitted to administer it.

Yesterday I was completing a reference form for a former student hoping to go to graduate study when I read this: "Please tick here if you do not consent for us to disclose the information provided in this reference, to the applicant. If requested by the individual to release this information, we will take your consent preference into account when considering all of the circumstances and deciding if it is appropriate."

It struck me as interesting that, in this case, an explicit refusal of consent was taken as something to be considered, but not as binding. Of course, what's at stake in the two cases (medical treatment and privacy) is different. Some universities do allow applicants to waive any right to see their references, but the referee's wish not to have their comments disclosed to the candidate is (in almost all circumstances) less important than someone's wish not to be operated on.

In the case of organ donation, someone's organs can (under current UK law/practice) be used without their consent, since their next of kin can make the decision after their death. Families rarely go against the recorded wishes of the deceased, where these are known, but since many people do not make their preferences known, it's inevitable that some will have their organs used though they would not have wanted this.

This is one reason why those who do not wish their organs to be used might support a switch to an opt-out donor system: though it imposes upon them the burden of registering their wishes, it allows them to record their objection (which arguably should then be binding, whatever the views of their next-of-kin).

Why Don't People Register as Donors?

So far this blog has mainly focused on current news items, but I thought this piece from 2005 was interesting enough to deserve comment. Thanks to Christopher Hourigan for bringing it to my attention, in a piece in the British Journal of General Practice, October 2005.

Though surveys usually show a majority of people are in favour of organ donation, actual registration rates are much lower. (Of course, actual donation rates are lower still - people often don't die in ways that facilitate the use of their organs.) Why is this? Of course, there are many reasons, and one shouldn't discount the possibility that people who say they are in favour of donation in surveys aren't really so, at least in their own case. But it's worth investigating people's reasons.

According to the survey reported by the BBC, just over 50% of those who hadn't registered as donors hadn't thought about the issue. While this needn't license using their organs anyway, it does suggest that they didn't have serious objections to the practice. Most of this people, if they had thought about the issue, and were typical of those who had, probably would choose to register. So, one obstacle to donor registration appears to be apathy or, perhaps more accurately, an understandable squeamishness in thinking about death. Drives to increase donor registration should encourage people to think and talk about these issues.

Perhaps even more interesting is that 30% of respondents said they 'hadn't got round to it'. These people want to donate their organs and, it seems, their wishes would be respected by an opt-out scheme.

Only 10% report an objection to the use of their organs. Interestingly, many of these objections appeared to be based on false beliefs or misconceptions. This doesn't mean that the objection can simply be ignored, but it does suggest that these people might change their views - and consent to organ donation - if they were properly informed.

Looking at the reasons why people do and do not register as donors can help inform registration policy. Stirling psychologist Ronan O'Carroll has been doing some interesting work in this area, some of which I hope to report on in a later post. I'd be interested in more recent studies like that discussed here, if anyone has any.