1: Clause 1, page 1, line 22, leave out from beginning of line 22 to end of line 2 on page 2 and insert—
“(6B) The consent of the person concerned is only deemed once a person in a qualifying relationship affirms that the person concerned would not have objected to the activity.””
My Lords, I will begin by speaking to Amendment 1 and will then follow on to Amendment 3. I should point out that I am recovering from an operation—not a transplant—on my eye, and my vision is not as good as I hope it will be. In doing so, I declare an interest as a former transplant surgeon, and as someone who has a close relative currently awaiting organ donation for a far-reaching transplant operation. I also put on record my sincere thanks to the Minister in another place, who kindly met with me to discuss the issues that I will raise today.
The relationship between the patient and the doctor is very precious, but it only works because of trust. When trust breaks down, as it has in the past in relation to organ donation, the cost can be considerable. We need only think of the experience of Alder Hey to realise that, as we are really concerned about organ donation, we must tread carefully. Lest anyone should think that all is forgotten, I should tell the House that I received an email just a few days ago from an affected family.
The principal concern that those who work in the field of organ transplantation have about this legislation is its potential to damage trust between doctor and patient in a way that reduces the total pool of potential donors, for the reasons I explained in my speech at Second Reading. To recapitulate briefly, the key concern is that the introduction of deemed consent will reduce, rather than increase, the total pool of donors.
I will explain why. For anyone who is unfamiliar with the world of organ donations and assumes that only those who have signed the organ donor register can be donors, it is easy to see the huge appeal of deemed consent. If 37% of people have signed the donor register, then introducing deemed consent is clearly attractive; even if this provoked 10% of people to opt out, one would still be increasing the total pool of donors from 37% to 90%—a huge boost.
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Mindful of this and of the desire to limit the numbers of people who opt out, I propose through my Amendment 1 that we should provide potential donors with the reassurance that the opinion of their families carries more weight than the state’s opinion in the event that they clash. This should be set out both in legislation and in the code of practice. It will make it less likely that people take offence, and less likely that they withdraw and sign the opt-out register. I understand that the Government are keen to avoid divisions, and so am I, so it is not my intention—certainly today—to divide on this issue, but rather to seek reassurances from the Government on the record.
The key part of the Bill that is relevant here is new subsection (6B), introduced by Clause 1(4). At the moment it states:
“The person concerned is to be deemed, for the purposes of subsection (6)(ba), to have consented to the activity unless a person who stood in a qualifying relationship to the person concerned immediately before death provides information that would lead a reasonable person to conclude that the person concerned would not have consented”.
The key consideration here is the word “information” and what we mean by it.
My solution is to have transplant nurses, who are key to this whole problem. They are essential in dealing with the family, explaining the situation and getting it to discuss it in a sensible way. But I agree that that would be a problem.
If the Minister is able to assure me that the Government intend that the word “information” should be widely defined so that, for instance, if someone was to say, “I am convinced that my husband was unaware of the deemed consent law and would have opted out had he known; therefore, you should not take his organs”, this would count as valid information and prevent the deeming of consent. This would reassure many people with concerns about the deeming of consent.
In most cases, there would be no means of proving in a court of law that the husband was unaware, so if that is what the wife says, it should be accepted. If people knew this, they would feel less threatened—that the state was trying to supplant them and their family, and other people and their families—and be less likely to opt out. This approach is entirely consistent with what the Government propose with respect to faith communities. If a Muslim wants to be a donor and carries one of the proposed new faith-specific organ donor cards, it means that they want to donate, but subject to the views of their religion being respected. I simply seek reassurance that people will be assured that the same respect will be afforded to their families and living representatives.
In asking this question, I should stress that I am not asking the Minister to say that no doctor would ever take organs if the family was unhappy. I am of course aware that most doctors would be reluctant to do such a thing. I am asking specifically what the Government intend that the law should mean. I want to establish whether the Government intend that a doctor should, from a purely legal perspective, be able to transplant organs even if the family members provide information, based on what they believe their relative would have wanted, which suggests that consent should not be deemed. If the Minister can confirm that the Government’s intention is that “information” should be widely defined—so that if someone were to say, “I am convinced my husband was unaware of the deemed consent law and would have opted out had he known”, this would count as valid information and prevent the deeming of consent—I will withdraw my amendment.
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That leads me to my second major concern: such money would be far better spent making changes for which there is robust evidence of success. Although the evidence on the efficacy of deemed consent is profoundly contested—as I said, we know that more than 180,000 potential donors have withdrawn from donation in Wales—the evidence on specialist nurses in organ donation is clear. As NHS Blood and Transplant has shown, where specialist nurses are available to speak to the deceased’s family, the family either donate or authorise donation in 68% of cases. Where specialist nurses are absent, the figure is just 27%. That is a huge and incontrovertible difference. I am also mindful that the organ donation and transplant activity report for 2017-18 demonstrated that specialist nurses in organ donation did not approach potential donors in about 10% of cases of potential donation. Finding the money to address this shortfall would constitute a much more responsible, evidence-based way to spend scarce resources efficiently.
Mindful of those considerations, my conclusion is that the people of England should be afforded the same reassurance in our legislation that there will be ongoing funding to make people aware that if they do nothing, they are agreeing to donate. However, I do not think that it makes sense to try to raise the kind of money that would be required to credibly—
I return to my basic question and ask whether the Minister can confirm—[Interruption.] I am speaking to two amendments; 15 minutes each makes 30 minutes. Can the Minister confirm that the Government intend to define widely the word “information” in proposed new subsection (6B), introduced by Clause 1(4), so that if someone said, “I am convinced that my husband was unaware of the deemed consent law and would have opted out had he known, so you should not take the organs”, this would be regarded as meeting the definition of “information” in the Bill? If the answer is yes, I will happily withdraw the amendment and I will not die in a ditch for my second amendment, but it is entirely reasonable to suggest that the people of England deserve the same statutory assurances on advertising as the people of Wales. I beg to move.
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But this is not how organ donation works. At the moment, anyone in England can be an organ donor apart from the 0.7% who have signed an opt-out register. Crucially, you do not need to have signed the organ donor register to be a donor. In fact, as I set out at Second Reading, most organs donated in England in the past five years came from donors who had not signed the organ donor register or the opt-out register. The key to their donation was their family, who made the donation decision for them. Rather than increasing the total pool of donors, the introduction of presumed consent actually threatens to reduce the total pool of potential donors from 99.3% to something more like 90%—a small but not insignificant minority opt-out.
In Wales, over 180,000 people, all of whom were previously potential donors, have now withdrawn from donation. This equates to 6% of the population. All of those potential organs are now lost to the system. If we are to press ahead with this legislation, the imperative must be to do everything we can to minimise the number of people who take offence and withdraw from donation. That objective is at the heart of everything I have to say, and is particularly central to both of my amendments —Amendments 1 and 3. Rising to the challenge of limiting the number of people who opt out necessitates that we seek to understand why the introduction of deemed consent, and specifically the way in which it relates to the role of the family, provokes a significant level of withdrawal from donation, as mentioned a moment ago.
The principal reason why some people take offence is that they perceive deemed or presumed consent as a mechanism in law whereby the state can claim their organs without securing what they would regard as proper consent, and on this basis suggest that the state better represents the views of the deceased than his or her family. Mindful of this, it is important that we do not pass legislation that gives the impression that the state and its laws can better vouch for what the deceased would have wanted, rather than his or her family.
Neither the Welsh legislation nor the accompanying code of practice states that if the family objects because it does not believe that the deceased chose deemed consent, consent will not be deemed. In this context, these documents assert that the state effectively knows better than the family and, mindful that legal consent has been given, the door remains open for organs to be taken from people who the family believes did not choose to have their consent deemed, and who have signed neither the organ donor register nor the opt-out register. Happily, no doctor has availed themselves of this legal opportunity to transplant organs in the face of family opposition, but there is no statutory guarantee that this will not happen in the future. This is rather risky. It would take only one overzealous doctor to decide to take the organs of someone whose consent has been deemed, against the protestations of the family, for trust in the donation system to break down. It could put back the cause of donation many years.
I turn now to Amendment 3, which places a statutory obligation on the Secretary of State to make people in England aware of how deemed consent works, including through an annual advertising campaign. Quite apart from making all existing adults aware, we must remember that every year, about 760,000 people turn 18 years of age in the UK, and all those in England will need to be written to. Then we must be aware of all the people coming into England each year from other jurisdictions. Crucially, the awareness-raising and advertising provision set out in my amendment is made in the existing Welsh legislation but is missing from the Bill. My motivation in moving the amendment is exactly the same as for Amendment 1: I want us to do everything we can to limit the number of people who opt out of donation as a result of the introduction of presumed consent, for all the reasons I have already set out.
The organs of the 182,519 people who have opted out in Wales in response to the deeming of consent are completely lost from the donor system. No one had opted out previously. If Wales loses this number in a context where there is statutory assurance about advertising, thereby making it more likely that a person whose consent has been deemed really has made a donation decision, how much greater will the risk be in England if we do not provide that same assurance? We must do everything possible to limit the number who opt out in England. In order to have a credible system of deemed consent, one has to put in place the requisite infrastructure to make it reasonable to claim that anyone who has signed neither the opt-out nor the opt-in register has made a deliberate, conscious decision to become an organ donor by having their consent deemed.
This depends, critically, on a huge advertising campaign so that it is credible to suggest that the entire adult population will have seen the relevant adverts and taken on board that if they want to donate, they can give effect to that decision by doing nothing, and that if they do not want to donate they must sign the opt-out register. If one does not have a very large advertising campaign, members of the public will work out that the chances are that a significant number of individuals whose consent will be deemed will not actually make a conscious donation decision; they will have simply done nothing, not appreciating that in this context, the absence of an action is considered a decision and authorisation for organ donation. If members of the public who recognise that the law has changed suspect that the state is underinvesting in advertising and therefore cannot credibly suggest that everyone whose consent has been deemed will have decided to have it deemed, they are much more likely to feel that the state is trying to take organs without proper consent. In this context, it is more likely that people will feel like opting out. It is thus critical to reassure the public that there will be a major and ongoing advertising campaign.
On the basis of the current Bill, we are rather vulnerable on this point. In the first instance, unlike the Welsh legislation, it provides no assurance that there will be proper and ongoing investment in advertising by making it a statutory obligation which cannot be changed without an Act of Parliament. If, however, the Government accept my amendment, they will give the people of England the same assurance that has been given to the people of Wales, and that there will be a serious and ongoing advertising campaign about how presumed consent works. This will give credibility to the claim that everyone who has done nothing in respect of organ donation has made a deliberate and conscious donation decision. As a consequence, there would be less scope for people to feel offended and opt out.
In the second instance, this weakness is reflected in the fact that the advertising budget is £18 million over four years. I have two major concerns about this. First, when one allows for the fact that the adult population of England in 2017 was recorded as 43,752,473, that works out at just 41p per person over four years, or 10p per person per year. I am not convinced that this tiny sum treats people’s consent with appropriate respect. It does not allow us to conclude that everyone who has not opted out has made a deliberate and conscious decision to opt in. Others are bound to think the same, and this risks significant withdrawal from donation, because there is a greater chance that people will think the system unfair and want no part of it. In this context, one option would be significantly to increase the proposed level of advertising, making people aware that if they do not opt out, they will be treated as if they had consented to donate. To secure a credible arrangement, however, would require a lot more money over a sustained period. In contemplating that, we have to ask whether it is worth it.