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We need to talk about Geoffrey Robinson’s Organ Donor (Deemed Consent) Bill

I am all in favour of organ donation. So you may think I’d be in favour of the Private Member’s Bill introduced by Geoffrey Robinson, the Labour MP for Coventry North West. Well, actually, no. I’m not. But I am very grateful to the MP for introducing the Bill, which will have its Second Reading debate today, because it gives us an opportunity to talk about it.

But first, in a nutshell, Mr Robinson’s Bill is a simple, short and to-the-point piece of law which would amend the Section 3 of the Human Tissue Act 2004. If the Bill becomes law, a patient who meets the criteria for organ donation will have deemed to have consented, unless they had taken steps to opt-out. The steps to opt-out are simple and do not involve the creation of a register, it merely requires “a person who stood in a qualifying relationship to the person concerned” providing information to the medics “that would lead a reasonable person to conclude that the person concerned would not have consented.”

What is there to object to?

My concern with the Bill is that the evidence from Wales, where deemed consent was introduced in December 2015, is that the number of organ donors fell. Now, it is early days, as this paper by Andreas Albertsen, of the Department of Political Science at Aarhus University, and published by the British Medical Journal, explains, but this is something that must be observed for longer and considered before we take similar steps elsewhere in the UK.

The Bill itself would change little to the dynamics of consent as a patient approaches death. Specialist transplant nurses, supported by doctors, would still approach families and next of kin to talk about organ donation. The transplant will not go ahead if the family or next of kin object, because this objection could be considered to be information “that would lead a reasonable person to conclude that the person concerned would not have consented.”

And so, even though I’m not convinced Geoffrey Robinson’s Bill is the answer to the problem of the shortage of organs, I am very grateful to him for introducing the Bill, because it gives us a chance to talk about it. And talk about it is what we need to do.

For some people, what I am going to suggest will be very difficult. But it needs to be said:

Take a look at your loved ones: your wife or husband, your parents, your children; and imagine, for a moment that they are close to the end of their life.

Now ask yourself a question. If you were asked about organ donation, would you say yes?

I was a little mischievous in that question: I didn’t indicate in the scenario whether your loved one was the patient being kept alive by breathing machines whose organs might be suitable for translation; or whether your loved one was the patient fighting to stay alive until a suitable organ becomes available.

Last January, my wife had a stroke – it was described by the doctor as a “catastrophic bleed to the brain”. As the ambulance drove her to the hospital I knew it was very serious. I declined the invitation to ride in the ambulance. I told them that I would go by car so that I could bring her back. But, deep down, I knew that I wouldn’t. I drove slowly to the hospital because I didn’t want to hear the news that I thought was inevitable.

Jill was 51-years-old and, until the stroke hit – a subarachnoid haemorrhage – there was no indication that she was close to death. After the stroke hit, she remained unconscious until she died, two days later. There was no opportunity at that point to talk to her about organ donation. But I knew without any doubt that Jill would want to donate her organs. And so did her twin sister, who had travelled to join me at the hospital for Jill’s final days.

We knew that this was what Jill would want so much, that we raised it with the medics before they had the opportunity to raise it with us. We knew, because both of us had had conversations with Jilly about it. The twins first spoke about it when they were teenagers. Jilly and I spoke about it whenever organ donation issues were in the news or in television programmes.

Talking about it is the most useful thing that can happen with Geoffrey Robinson’s Bill. Whether it becomes law or not, nothing will change unless people talk about it and understand the way their loved one feels.

It isn’t as daunting as it may sound. You don’t need to hold some sort of formal meeting and keep notes or fill out forms. You don’t even need to ask your loved one: “Do you want to donate your organs when you die?” You can tell them that you want to donate yours. You can ask them what they think about the proposed new law. You can do it while you’re watching the television. You can do while you are doing the washing up. You can do it while you’re having a pint. You can do it when you go to bed in the morning. The key thing is to do it. And to do it before it is too late to do it.

Why is this important?

It is important because people are dying while waiting for a transplant; and the available “pool” of potential organs is very small. To be an organ donor, a person has to die in a hospital intensive care unit after teams of people in different hospitals have been brought together.

So it is important that those whose deaths can bring lives to others are used in that way.

So talk. Tell your loved ones what your views are. And ask them what their views are.

There is no need to be superstitious: talking about death will not hasten death. But it could bring life.

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