Health

Opt-out organ donation is not a solution and as someone who will need a transplant, I don’t want it to be law


(Picture: Ella Byworth for Metro.co.uk)

Of the 5,000 plus people currently active on the UK transplant waiting list, I’d hazard that the majority will welcome the news that opt-out organ donation is set to be in force by 2020.

Having spent just under five years waiting for a kidney myself, I understand why this kind of legislative change seems important: it offers hope to people with organ failure in a situation that often feels hopeless.

I was – am – one of the lucky ones. I fell ill with kidney failure as a child and have had two transplants. The first kidney came from my mum; my second kidney came from a deceased donor, when I was 27.

All transplanted organs have a shelf life, however. Deceased donor kidneys have an average life span of 12 years, so I will almost certainly need a new kidney within the next decade.

I am also, I imagine, in the minority – a transplant patient who does not want opt-out organ donation to become law.

This is because there is no conclusive evidence that it actually raises rates of transplants. We should probably consider this before we spend a vast amount of time and money bringing it into force.

The best we can say is that opt-out organ donation might increase transplants rates, in some places. Sweden, Luxembourg and Bulgaria all signed up for opt-out and have some of the lowest rates of organ donation.

But then there’s Spain, a country that has seemingly had success with opt-out. There is one, small caveat: it didn’t work for the first six years and when it did, it wasn’t because organ donation had become mandatory.

Opt out creates division at the heart of an issue that can affect anyone, and hence affects us all, and requires a unified response.

Experts agree that for opt-out donation to have an impact, it must be established in tandem with an overhaul of the infrastructure around organ donation.

Transplant rates in Spain only escalated in the mid-80s, which just happened to be when the multiple, regional transplant networks were unified nationally, more specially trained transplant coordinators were brought in and more intensive care beds were made available.

Both Mr Keith Rigg, a consultant transplant surgeon at Nottingham NHS Trust, and Claire Williment, head of transplant development at NHS Blood and Transplant, have called for infrastructure changes, and while health minister Jackie Doyle-Price reiterated the need, I have yet to see tangible plans with the current legislative offering.

There is ‘no magic formula’, said Williment; Rigg agreed that it is ‘unlikely that opt-out legislation will deliver the necessary improvements in organ donation and transplantation rates alone’.

This is before we explore whether the beleaguered NHS can sustain the structural overhaul required to give opt-out a chance.

Under the law as it currently stands, we are all donors. Even people who have never heard of donation can save lives if their next of kin opts to have their organs donated.

Introducing an opt-out scheme will see people actively excluding themselves, creating division at the heart of an issue that can affect anyone, and hence affects everyone, and therefore requires a unified response.

In Wales, one in 20 adults opted out when the scheme came into force in 2015, reducing the pool of available organs by 5%.

Furthermore, the opt-in scheme works.

Let me be absolutely clear: the system is far from perfect. In 2016, 457 people died while waiting for an organ.

I knew some of them. I might end up being one of them. Absolutely, change is needed if we are going to save lives.

But the number of overall donors in the UK has increased over the last 10 years, and in Nottinghamshire, the number of people signing up to donate has increased by 27% over five years, from 2012 to 2017 – all without opt-out.

I am testament to a system that works, as is Max Johnson, the courageous young boy who campaigned for the law change, and received a heart under the opt-in system.

It is a tragedy that people die while waiting for an organ but it is worth remembering that there is no cure for organ failure and transplant is a treatment, not a magic panacea.

Would our limited resources not be better utilised looking for remedy, rather than respite?

I would also argue that we have an opt-out system already. I call it the ‘Tell Your Friends And Family You Don’t Want To Donate’ system – admittedly the title could be snappier.

The British Medical Journal (BMJ) has noted relatives’ refusal to consent as one of, if not the, major factors for depressed transplant rates.

I cannot imagine the agony of having to consider organ donation mere hours after a loved one has died; I understand the argument that an opt-out system has the potential to negate relative refusal and ease suffering.

Yet the solution to this seems to be greater awareness, more openness around the topic, more readily available education so that people are already informed should the worst happen. We must do more to debunk myths and relieve anxieties.

The same BMJ report reveals that high intensity, positive publicity campaigns can reduce relatives’ refusal by a quarter (they say ‘only’ a quarter – I think that’s quite a lot) and that ‘if changed presumption is not associated with a reduction in relatives’ refusal, the gain could be slight or even negative.’ A case for more education if ever I heard one.

As I write, nobody is mandated to donate but we are all free not to.

I believe the right to autonomy over our bodies to be a natural law.

I do not believe that our government, that any government, has the right to predetermine the fate of our organs. With a ‘hard’ opt-out, the government has claim to our organs from the moment we are conceived.

(There is a Brexit-sounding ‘soft’ opt-out option, in which next of kin has power of veto, just as they already do).

As a society, we have ratified a woman’s right to have an abortion; is the fate of our internal organs so different? If we have sovereignty over our bodies in life, it follows that we should have it in death, and that right should be entrenched.

I wish that no one had to suffer organ failure; if I could make it so that everyone on the waiting list could be instantly cured, trust me, I would.

I empathise wholly and deeply with anyone for whom opt-out brings hope. Similarly, I recognise it must be agony to be asked about organ donation mere hours after the death of someone you love.

But I cannot and will not get behind a system that is unproven, arguably unnecessary and morally problematic – and as someone who will likely need another transplant in the next 10 years, I have no more claim to your organs than our politicians.

If you would like to donate, sign the register here (it really does take two minutes, I’ve signed up to donate everything) and, crucially, make your wishes known.

People are dying because there is a lack of organs and I’d like to think we would all choose to save a life if we could.

But organ donation must be a choice, because life must be a gift given freely.

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