So much political folly could be avoided if we focused on outcomes rather than intentions. The passing of legislation in the Commons last week to introduce presumed consent for organ donation will probably not result in disaster but the law is likely to be a flop and the campaign for its introduction should concern anybody who hopes for evidence in policy-making.
The idea is simple. Hundreds of people die every year for want of an organ donor. If the government switches from the current system, in which have to people opt in to the organ donor register, to a system in which people have to opt out, there will be more organ donors, more organs donated and more lives saved.
This being the case, the only challenge for politicians is to persuade or overwhelm those who have an ethical or religious objection to doctors harvesting their organs without permission. I respect the views of such people but I do not share them. The idea of the state implicitly owning my corpse makes me feel slightly uncomfortable, but people dying needlessly because of beliefs which are essentially irrational is worse. Proponents of presumed consent rightly argue that there is no coercion because it is easy to opt out.
If you have no moral objections to presumed consent, the only question is whether it works. And that is where it falls down.
When Wales introduced an opt-out system in 2015, Health Minister Mark Drakeford called it a ‘ground-breaking step which will save lives’. The First Minister Carwyn Jones described it as ‘law making in Wales at its best’. It was left to the Bishop of Swansea and Brecon to be the ghost at the feast, warning that ‘in the deeming of consent, there is always the risk that that idea of gift might vanish.’
The results are now in. An evaluation published by the Welsh government last year found that the data ‘does not show any consistent change in deceased organ donations in Wales’ and that there has been ‘no rise in average quarterly donor levels’. These findings were reported by the BBC and the failure of presumed consent in Wales has been widely discussed in the medical media. Despite this, MPs have pushed through the legislation in England with the ludicrous assertion that it will save hundreds, or even thousands, of lives each year.
The reality is that not a single life will be saved if the outcomes seen in Wales are replicated in England and it is quite conceivable that lives will be lost. How can this be when so many more people are opted in? It’s because, as the Bishop of Swansea and Brecon feared, the gift has been vanishing.
Many people believe that the current system requires explicit consent. It does not. If you die without an organ donation card in your pocket, your next of kin can give consent on your behalf. It is wise to put yourself on the register and explain your wishes to your family, but it is not essential. If you haven’t registered, your next of kin can give permission. If you have registered, they have no legal right to veto.
If you do not want your organs to be given to somebody else, you can put your name on a separate register. Very few people do this at the moment – except in Wales. In 2016/17, there were 27,559 people in England who had explicitly opted out of the system, a mere 0.05 per cent of the population. In Wales the figure was 175,000, or 5.6 per cent. These are people who have been taken out of the system for good. Their decision cannot be overruled by the next of kin.
Presumed consent has therefore led to there being fewer potential organ donors and we should not be surprised that it has not led to more organs being donated.
Although counter-intuitive at first glance, this outcome seems perfectly logical once it is explained. The Welsh government can be forgiven for experimenting with the idea in 2015. It is not inconceivable that it could have worked. But now that we have the results from a near-perfect natural experiment, it is inexcusable for English MPs and a national newspaper to make grandstanding claims about the new legislation saving hundreds of lives. What is the point of evidence if it is disregarded in favour of good intentions?
It is far from impossible that presumed consent in England will lead to fewer organs being donated, but even if the Welsh experience is emulated and it merely has no impact either way, the policy is not cost-free. A significant minority will be very unhappy about the law being introduced and a good deal of money will have to be spent informing the public about it.
If we want to increase the number of donors, there are better options. Given the importance of the next of kin under the current system, efforts should be focused on asking the crucial question delicately and sensitively at this most difficult of times. As Katherine Wright of the Nuffield Centre on Bioethetics points out, using specialist nurses to handle the situation appropriately greatly increases the likelihood of the family giving consent. It is this, not presumed consent, that has helped Spain achieve such a high rate of donation.
More controversially, we could repeal the ban on people selling their organs while they are alive. A few countries provide some form of financial incentive for live organ donors and this seems to work. Less controversially, we could make organ donor cards more accessible to the public. In the 1980s, I recall them being a common sight on shop counters. What happened to them?
None of these solutions will give MPs the warm feeling of righteousness that they experienced last week but, unlike presumed consent, they might actually do some good.