Organ Donation (Deemed Consent) Bill

Lord McColl of Dulwich Excerpts

2nd reading (Hansard): House of Lords
Friday 23rd November 2018 Lords Chamber

[Lord McColl of Dulwich (Con)]

I too congratulate the noble Lord, Lord Hunt, on bringing this Bill through. I should declare an interest as a former transplant surgeon. I found kidney transplantation the most exciting operation that I did in my 50 years of surgery. Kidneys would be flown in from all over the place in order to try to achieve a good match. One would connect up the vein and then the artery and to my surprise I found that some of the kidneys would start peeing on the table immediately, which was wonderful, but I noticed it was only the French kidneys that did this. I asked what it was about these French kidneys, and they said, “It’s the French wine, you know”. Well, in fact there were other factors involved.

At present, around 6,000 people are on the UK transplant waiting list, and last year over 400 people died waiting for a transplant. With so much at stake, it is not surprising that the question of how the donation system should operate is a source of strong emotion. The increased public awareness of the great benefits of donation is to be welcome, but—and there is a “but”—I have been rather taken aback by the way in which the evidence of what works, even the facts about the current law, has been manipulated and inflated by the media, in parliamentary debate and even in the consultation materials themselves. I do not think this is the way to support and maintain trust in our transplant system, nor to demonstrate commitment to evidence-based policy.

The 2011 Nuffield report, Human bodies: Donation for Medicine and Research, which has been mentioned quite frequently, strongly supported organ donation,

“where this is in accordance with the wishes of the donor”,

but it did not advocate a change in the current law to the opt-out system. Nuffield concluded that,

“such a system could be ethical, as long as a number of potentially onerous criteria were met. People need to be fully informed in order to be able to make an active choice about whether or not to donate, which implies a long term and expensive commitment to public information and education. Families need to be appropriately involved—recognising not only that they are likely to have the best knowledge of their loved one’s attitudes to organ donation, but also that they themselves, in their bereavement, have a stake in what happens to the deceased person’s body. Critically, the system must operate in a way that ensures that public trust in the donation and transplant system is not undermined, for example through perceptions that the state is intervening to ‘take’ organs against family wishes. We only have to look back two decades to the outcry caused by tissue retention in the NHS to be alert to the way in which trust can be undermined, not least by failing to take into account the complex family and personal meanings associated with the body in death”.

In considering these questions of trust, the report also assessed, in more general terms, whether such a change in the law would increase donation. As it said,

“the quick answer is that no one knows. In contrast with the claims (confidently asserted over past months) that opt-out will save ‘thousands of lives’, the Department of Health’s own Impact Assessment, published alongside the consultation document, described the evidence on the impact of opt-out on donation rates as ‘inconclusive’ … Despite all the emotional rhetoric, the jury is still out on whether changing the law in this way will make any difference at all to the numbers of organs available for transplant”.

In beginning to assess the efficacy of presuming consent, we have to confront a misunderstanding about how donation works in England today. All too often, the assumption is made that only those who have signed the organ donor register are potential donors. Given that just 37% of the population in England have signed the register, it is thought that a shift to presumed consent will increase the pool of potential donors dramatically. Even if 10% of the public opt out, one would still increase the total pool of donors from 37% of the population to 90%. The difficulty with this logic is that it fails to appreciate that, at present, it is not only those who have signed the organ donation register who can donate. As Answers to Parliamentary Questions I tabled in July demonstrate, most donations in England at the moment come from families of people who have not left instructions about what they want done with their organs. To put the same point another way, at the moment, most organs are donated by people who have not signed the register. Critically, this means that clinicians in England are not limited to a pool of the 37% of people who have signed the register—they can approach the families of 99.3% of people. The missing 0.7% relates to those who have signed the opt-out register in England, and cannot be approached.

Rather than increasing the pool of potential donors, moving to informed consent reduces it. Whenever consent is presumed, some people take offence and sign the opt-out register. In Wales, prior to the instruction of its deemed consent law in 2015, there was no opt-out register, so 100% of people were potential donors. As a consequence of introducing presumed consent, however, 180,000 people, or 6% of the population, have now opted out. It is no longer possible for clinicians to talk to families about donation, when previously they could all have been approached. The organs of those 180,000 people are simply lost to the system. Rather than increasing the pool of potential donors, the introduction of presumed consent in Wales has involved spending public money to reduce that pool from 100% to 94%.

The truth is that, regardless of what system is operated at the point of donation, the key player is the family. Not having signed the organ donor register does not prevent doctors talking to the family about donation. Presuming the consent of the donor does not enable doctors to avoid talking to the family about consent. It makes no difference whether the donor had signed the register or had his consent presumed. At the end of the day, they will be unconscious, and the key conversation must take place between the clinicians and the family. In this context, the focus of our attention should be, as many speakers have said, on the family.

We know from the detailed reports published each year by NHS Blood and Transplant that the key factors associated with high consent rates are support for families by specialist nurses, and families knowing what the deceased person wanted. Consent rates are as low as 27.5% when families are not supported by a specialist nurse. They increase to 68% when a specialist nurse is involved, and to more than 90% where families are confident of the deceased’s wishes, as the noble Lord, Lord Patel, the noble Baroness, Lady Finlay, and my noble friends Lord Lansley and Lord Ribeiro have already said.

This is consistent with the experience of Spain, which, as has been mentioned, has sustained the highest donation rate for more than 20 years. Rafael Matesanz, the leading light of the Spanish transplant system, ascribes the well-known successes of the Spanish system to its focus on efficient systems and excellent family support. He is on record as calling the opt-out system a “distraction”. Despite being classed wrongly by some as an opt-out country, Spain operates neither an opt-in nor an opt-out register, and relies entirely on family authorisation for the legal basis of donation.

The official evaluation of the Welsh law was published in November 2017, two years after it came into effect. It showed that if you compare the resident Welsh donor rate for the 21 months before the introduction of the new system with the 21 months since, far from increasing, the numbers fell slightly from 14.6 donation decisions per quarter to 13.4 donation decisions per quarter. This is less than encouraging. Admittedly things have since improved, but it will take at least five years to show any meaningful trend. In assessing that trend, it will be critical to allow for increased investment in specialist nurses in organ donation and critical care beds, which has nothing to do with presuming consent but will increase donation rates. The official evaluation concludes that longer period of time is needed to draw firmer conclusions about the impact of changing the law.

In the context of 400 people dying while waiting for a transplant, and when we do not have limitless public funds, I find the prospect of spending millions of pounds of public money on presumed consent rather concerning. Any money that we spend on presumed consent, for which we have no robust evidence of success, we cannot then spend on things that we know will increase donor donations. We should wait to see what happens in Wales and spend any additional monies on more specialist nurses in organ donation and more critical care beds. If the Government are determined to back this Bill, it will be imperative to limit the potential scale of withdrawal from donation by assuring people on the face of the Bill that their families will be properly consulted. This statutory guarantee of consultation must be genuine and not limited to simply giving the family a right to provide evidence that the family member did not want to donate, as in Wales.

Finally, I have another interest to declare. My daughter is a potential transplant recipient.