Organ Donation in England is changing. Accountability for health policy leaders is important, especially when politicians score headlines for healthcare interventions without an evidence-base. If you can stomach the relatively partisan angle in this post originally written for the Progress group within the Labour Party, then read on to hear why I think introducing opt-out in Wales was innovative leadership, but the plan to introduce it in England is not:
This month the government announced that it aims to introduce ‘presumed consent’ for organ donation (or ‘opt out’) in England by 2020. Although it is relatively low-cost and popular, it cannot deliver the substantial change that patients desperately need.
The present law in England might be described as ‘opt-in’ but that’s not the whole story.
Although ostensibly stipulating that a person’s organs cannot be transplanted after their death without explicit consent, the present system allows family members to inform doctors that the deceased wanted their organs to be donated. This means you don’t need to be on the organ donor register to end up donating.
More controversially, the code of practice for the Human Tissue Authority provides for the family to prevent donation if they object or believe that the deceased did not in fact want to donate, even if they were on the register. This is in place partly because of the ease of signing up to the register. You register as an organ donor when you get a Boots Advantage Card, and the register was even promoted to Tinder users. Just because somebody is registered, it doesn’t necessarily mean their heart is in it.
Under an opt-out system everybody is assumed to be willing to donate unless they explicitly say otherwise. However, there are two different approaches to this. Under a ‘hard’ opt-out regime, organs from anybody who has not formally opted out can be used for transplantation, even if the family believe it to be against the deceased’s wishes. Donations increased by up to 25 per cent when this policy was introduced in Austria and Singapore, alongside other changes to the organ donor system.
The policy planned for England, the so called ‘soft’ opt-out, was introduced in Wales in 2015.
If the family call into question the wishes of the deceased, then any possible donation can be cancelled. In practice this is not far removed from the present policy in England where those left behind hold great sway and their wishes and beliefs are respected by transplant teams.
Under the ‘soft’ opt-out regime of presumed consent, the hope is that fewer families will prevent donations, resulting in more donations. What we have seen in Wales since 2015 is that there was not a significant increase in donations: over the 21 months prior to the policy there were 101 and in the 21 months after the introduction of the policy there were 104. That is not a statistically significant difference. However, this is not to say there were not other encouraging signs and there is certainly evidence to show the public is positive about the change.
In 2015 Welsh Labour boldly introduced opt-out, doing exactly what a Labour government should do – test out progressive solutions to the problems we face. [Sorry about this.] The Welsh government persuaded the public that by working together Wales could look after its most vulnerable.
Without trying this policy out, Welsh Labour could not have known that it would only have a marginal effect on organ donations.
It was a good example of devolution allowing the nations of the United Kingdom to function as ‘laboratories of democracy’. The resourceful Welsh assembly experimented with this policy and uncovered its limitations. What Labour needs to do now is develop a new approach to organ donation in line with our values; one that compassionately brings the family along in the donation process.
It’s not the first time Theresa May’s Tories have adopted a Labour policy, but in this case the evidence has shown that the policy does not go far enough. One less eye-catching but more effective way to improve transplantation is to invest in transplant nurse specialists. Another is to encourage doctor’s surgeries to discuss organ donation.
There are patients on waiting lists up and down the country in the horrible position of wondering if somebody will die today and let them live. Meanwhile there are families saying goodbye to their loved ones, unsure whether donation is what they would have wanted. All of them deserve a government that will innovate, lead, and take the difficult decisions to protect everybody involved.