First published by Spectator Health in October 2018
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.
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