Double Arm Transplant for Iraq Veteran

I recently posted on the UK's first hand transplant. That's a worthy story in itself, but one American Iraq veteran and quadruple amputee recently received a double arm transplant. Medical advances really can be life-changing, as well as life-saving. As ever though, there are serious questions about who gets to benefit given resource scarcity. These distributive questions are primarily moral questions, as are certain questions about how resources (such as the supply of donor organs) can be increased. (Since I first saw this, the story has been picked up by the BBC here.)

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).

CFP: Panel at ALSP 2013 conference

Further to the general Call For Papers, I am organising a panel on Organ Donation and Transplantation Policy at the 2013 ALSP conference, which takes place on 24th and 25th June at the University of Stirling.

Interested parties working on related topics – such as medical consent, family vetoes, nudges and incentives, etc applied to organ donation – are invited to submit abstracts to the conference in the usual manner, indicating (in the abstract and not simply in the email) that they wish to be considered for this panel. (Submissions in other areas are, of course, still welcome; the panel will only run during parallel sessions.)

This panel forms part of a project supported by a workshops grant from the Royal Society of Edinburgh. Thanks to this grant, a limited number of panel members will be offered a subsidy towards the usual costs of registration and accommodation at the conference. This subsidy will be no more than 50% of those costs (possibly less) and does not include travel. No one will be expected to register before costs and details of any subsidy are confirmed; those who we cannot subsidise are still welcome to attend at their own expense (and to present, if their abstract is accepted).

Proposals for papers or panels in other areas falling under the conference theme are still welcome; please see the original call (linked above) or website.

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.

Hand Transplants

I'm not sure if this is technically an organ transplant - it's certainly not one of the cases that one usually thinks of - but Mark Cahill recently received the UK's first hand transplant.

The BBC article includes a useful history of organ transplants (cornea 1905; kidney 1954; heart 1967; hand 1998). It does, however, make the slightly odd claim that "Hand transplants raise more ethical questions than other transplants, such as the heart, as they improve the quality of life rather than saving a life".

This is puzzling because, while many transplants do save (i.e. prolong) lives, many simply improve the quality of the recipient's life, for instance a kidney transplant spares someone having to undergo dialysis. In this recent example (which I already linked to here) a donor is said to help four people but, as Norfolk coroner William Armstrong is quoted as saying in the article, "One life has been saved and the quality of three other lives have been immeasurably enhanced". Mr Savory's heart saved the life of someone who might otherwise have died, but his lungs and kidneys 'merely' improved the quality of life of three people not it seems in immediate risk of death. This still seems a very worthwhile achievement and not to raise particular ethical questions.

One feature of hand transplants - like face transplants but unlike internal organs such as kidneys - is their visibility, as illustrated by the case of Clint Hallam, who received the world's first hand transplant (pictured at the end of the BBC article). In his case it seems that while he hasn't physically rejected the transplant, he has psychologically: he feels that the hand isn't really part of him. This is a particular danger, it seems, for external transplants and something that may raise distinctive ethical questions.

A Sad, But Positive, Story

One person's death can help many others, as this example of a Norfolk man whose heart, lungs, and kidneys were donated, saving one life and improving the quality of three others. It's good to see positive coverage of the benefits of organ donation - hopefully it will encourage more people to register as donors.

Manipulating Waiting Lists

There's controversy in Germany over allegations that waiting lists for liver transplants were manipulated by doctors falsely listing patients as dialysis cases.

As noted in the BBC article "Competition between transplant centres may be to blame, experts say. There is a worldwide shortage of organ donors - a factor that may have exacerbated competition". Unfortunately there's a danger that negative publicity surrounding donation and transplants may put some people off registering as donors. This is a more serious problem where stories concern things like taking organs without proper consent, but even knowing organs won't necessarily go to the neediest cases may discourage altruistic donors. This, of course, creates a Catch-22 situation, since it's the shortage of organs that leads to nefarious practices in the first place.

My interests are primarily in the acquisition of organs, but it's important to remember that this may be linked with the distribution of said organs in practice, though of course analytically distinct.