I was delighted to be able to bring a policy letter to the States proposing an opt-out organ donation scheme which was passed by the Assembly. Here is my opening speech.
Sir,
The donating of an organ is a precious gift. It can be life changing. It can be life saving. Every year Guernsey residents have their lives saved or improved drastically because someone took the effort to expressly agree to allow their organs to be donated in the event of their death. Their death has allowed others to live.
In the last 2 years, 3 Guernsey residents have become donors and 12 have received an organ transplant. Major operations.
Sadly though, the number of people requiring a transplant significantly outnumbers the donors. There are currently approximately 6,000 people on the UK organ donation register that includes Guernsey residents, with 400 dying waiting for a transplant in the last year.
There are a number of reasons for this mismatch;
- The advancement of science means that more people can benefit from a transplant than ever before;
- The circumstances that enable a donation to be made are very precise, with less than 1% of deaths meeting those criteria. This can be due to the nature of the death but also whether an individual is found to have any underlying health issues that may preclude donation;
- The fact someone has not consented to allowing their organs to be donated; and
- And, even where someone has consented, the family is not happy for their loved one’s organs to be donated.
In terms of the first 2 that relate to the practical aspects, it may be in the future that scientific advances will enable organs to be replaced without the need for human donors or further research may demonstrate certain underlying health issues are not a barrier to donation as they were once seen to be. Every year advances are made in both areas.
It is trying to increase the potential number of donors that this policy letter seeks to address and why we are proposing a soft opt-out donation scheme.
Under a soft opt-out scheme an individual, unless someone has expressly stated their wishes, either for or against, will be presumed to have consented to be a donor unless their family express their objection, it clearly causes distress to a family, or if no family can be found. Deemed consent would not apply to those under 18, not ordinarily resident in Guernsey for the last year, or those without capacity.
The use of a presumed consent system was supported by Nobel Prize Winner Richard Thaler and Cass Sunstein, who developed the concept of nudge theory. In their book called Nudge, they described an experiment undertaken by Eric Johnston and Dan Goldstein who found out how important a default position in organ donation was. Here I’m hoping I haven’t stolen Deputy de Sausmarez’s thunder!
Using an online survey the researchers asked people in different ways whether they would be willing to be donors.
In the explicit consent version particpiants were told they had just moved to a new state where the default was not to be an organ donor. In the presumed consent version the wording was identical but the default was to be a donor. In the third neutral condition, no mention of a default, they just had to choose. Under all three conditions the response was entered with one click.
The default mattered. When participants had to opt in, only 42% did. But when they had to opt out, 82% agreed to be donors. Almost as many did under the neutral condition. A real life example of this is in Germany with an opt in scheme has a 12% consent rate, the same as Guernsey, compared to Austria with an opt-out scheme which has a 99% consent rate.
And as advised in the policy letter, Wales brought in a soft opt out scheme in December 2015. The very latest news announced a fortnight ago is that Wales now has the highest consent after death rate in the UK at 80.5% against a maximum for the rest of the UK of under 67%. Guernsey’s rate is only 46.7%.
I think it is worth just mentioning what happens when a potential donor is identified. It’s important we all understand this isn’t a run of the mill situation. Remember, this is an incredibly difficult time for friends and family, knowing that their loved one will die, especially, which is the most likely scenario, it is an untimely or unexpected death. It is something I know very well and I can say the passing of the years doesn’t make it any easier either.
It is important that the professionals involved at such a horrid time are incredibly well trained and experienced. Due to the very small numbers involved in Guernsey it would not be possible to develop that expertise here. The Specialist Nurses for Organ Donation (SNOD’s) are employed directly by UK Blood and Transplant and are free to us. When we identify a potential donor we phone them and they advise if transplantation is potentially possible. If it seems likely they fly over to speak to the family. Remember, all for free. Evidence is that the best consent rates are when the first contact with the family is by a SNOD with the ITU team.
But the change in the consent system will not improve donations per se. What we need and hope change will do, is lead to people talking about what they would or would not like to happen to them should such an unlikely circumstance arise with their family. Or better still, to register their preference, either for or against.
So, should this policy letter be approved, there will be significant publicity leading up to the introduction of legislation and we will ensure there is increased awareness in the future. Indeed, this is an area where we can pool resources with Jersey in particular, who have already been helpful in this area and I thank them for their support. This isn’t about a lot of publicity up front and forget about it.
And raising awareness doesn’t just mean broad media campaigns but through places like doctors’ surgeries, hospital, schools and community hubs. In others words, and in support of the Partnerhsip of Purpose, by Making Every Contact Count.
There will always be the conspiracy theorists and those who have a natural tendency to distrust the state that will rage against these proposals but this is not the State taking control of our organs. This is about changing lives and saving lives. This is about us as fellow human beings doing what we can for each other.
Presumed consent leads to a greater opportunity for donation.
Now I do hold an organ donation card, but I haven’t always done so. I always wanted to but, you know, just didn’t get round to it. I actually felt guilty that I hadn’t, but hey other things were going on. Work, kids, stuff. Ironically as for most of us LIFE just gets in the way of donating in DEATH.
I am not bothered what happens to my body when I am dead and happy for any of my organs to be donated, although I doubt whether my liver would pass muster after the last few years. However, eventually I did register for three reasons, the first was how could I not in my position leading a Committee that has a duty to protect promote and enhance the health and wellbeing of the people of the Bailiwick knowing what a difference the donation of an organ makes? What a poor example I would be giving if I did not?
The second was having been thrown from my bike in a head on collision with a car which I was lucky to walk away from just a few years ago and thirdly, and probably what made me sit up and really think, was when someone asked me, if you were dying and needed a transplant, would you take it? I knew my answer.
That is why I support a deemed consent system and why I ask members to please support this policy letter and help save lives.
The below is what I said in summing up.
Sir,
Just like to pick up on comments regarding family wishes. Really it would be impossible to ignore family at such a very difficult time. David Shaw writing in the journal of Intensive Care stated that even in an opt-in situation the family can cause an objection of around 10%. However, that does include the fact they provide information about a donor that makes it unviable. But the last thing anyone would want to do is make their distress worse. What is important, as I said when I opened debate, is that there are Specialist Nurses who talk with the family. Evidence shows that where you have such a professional consent rates are higher than when you don’t.
Those against presumed consent argue that this is undemocratic. Of course, we could spend hours debating this point. However, it is also the case that there is a presumption in both opt out and opt in system. In either case a proportion will be wronged by having their autonomy violated. It is also the case that those opposed to organ donation are more likely to opt-out under a system of presumed consent than someone who wished to opt-in Aunder an explicit consent system. Those objecting the most are more likely to have strong moral or religious objections of which they are very much aware and are unlikely to neglect to opt-out. In this regard, we need to determine whether the moral mistake that saves other lives is preferable to an equivalent mistakes that in addition costs lives. What we need is for organ donation to be seen as the norm and that we allow the sick to be left to suffer through a desire not to harm the potential autonomous will of the dead.
WE have heard views for families not having a voice and others that do. Perhaps like baby bear’s porridge it means we have got it just right. It is important to avoid further distress to the family at an already difficult time but is also, we need to avoid any negative reputational issues associated with transplantation services which may result in people generally losing faith in the systems and choosing to opt out.
Sir, members today have had a brief insight into the world we inhabit in Health and Social Care. Issues of life and death are an everyday part of what we have to deal with. We know that we can’t please everyone all the time and that difficult decisions have to be made. More on that in a couple of weeks’ time. However, today we have an opportunity to improve people’s lives and save people’s lives. Not just HSC but the whole of the community. Ultimately it is of course, working together that we will create a more sustainable healthcare system and improve the outcomes of the people of the Bailiwick.
I therefore ask all Members to support this policy letter.