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20 Nov 2008 : Column 153WH—continued
“The systematic review of research evidence commissioned by the Taskforce revealed an apparent correlation between high donation rates and opt out systems in countries around the world.”
That was the least it could say, because that is what the study showed. The systematic review could have shown something else, and it if had shown, or suggested, that the system did not work, it would have made that clear. It continued:
“However, the reviewers found that presumed consent alone does not explain the variation in organ donation rates between the different countries”—
that is a statement of the obvious—
“Many other factors affect donation rates.”
That, too, is a statement of the obvious. However, it is not a rebuttal of the main finding, but it reads as if it is. We know that all sorts of factors are involved, but the systematic review suggests that opt-out works.
Paragraph 1.9 of the report—and the hon. Member for Birmingham, Edgbaston raised this—says that
“some intensive care staff in particular fear that a move to an opt out system would make critical care more difficult and could lead to some intensive care practitioners themselves opting out of participation in donation programmes.”
Some people may have said that, but I do not think that there is a shred of hard evidence that doctors would stop doing their job on the basis of their personal views. Plenty of intensivists think that giving relatives the chance to veto a donor card or registration is outrageous, but nevertheless they go along with their duty as a doctor. I cannot believe that doctors would stop doing their job. No one is suggesting that under the soft system of opt-out, relatives would not be approached if there was an unregistered opt-out. I am surprised that that was thought to be such an important assertion that it was included in the summary report without the opposite view that some intensivists are less enthusiastic about the system that they operate at the moment.
“The working group considering clinical implications also heard powerful evidence”—
I emphasise those words, as the systematic review was not called powerful evidence—
“from recipients of organs who stressed their need to know that organs had been freely given by donors and their families, and from donor families who often find great comfort in being an active part of the decision to donate.”
I pay tribute to the families who have given permission, and I have the utmost respect for patients who have received an organ: I wish them well. During my clinical years, I worked to improve their welfare, and I have devoted a considerable amount of parliamentary time to that, too. However, if we ask someone who has successfully received an organ under the current system whether they believe that that system works, and they say yes, that is not surprising. Canvassing an unbiased sample of people for their opinion would make any conclusions truly powerful, but that would mean asking the relatives of people who did not receive an organ and who died as a result. Obviously, one cannot ask dead people what they think about the fact that they died for want of an organ that a donor would want them to have—the donor’s relatives, however, refused to give consent—because, I would argue, we have an opt-in system, and not an opt-out system, so the organs were lost because they were buried or cremated. However, it does not appear from the summary report that the relatives of such people were sought out. I allege that those people are the losers—and they would claim the same—under the current system, because we do not have the increased donation rate that the systematic review suggested might result from opt-out. I do not understand why the taskforce did not do that, unless it sought to gather evidence solely to back a certain opinion.
The taskforce asked relatives who had said yes what they thought about having a chance to do so. They naturally said that they valued that opportunity, and the fact that at the time of their bereavement they could make a decision to give life to someone else. That can be comforting—I do not deny that ,and there is research evidence to suggest that that is the truth. However, I cannot find any evidence in the summary report to suggest that people who said no were approached. We know that 40 per cent. of relatives consistently say no despite the fact that—as the hon. Member for Birmingham, Edgbaston and others have said—only 10 to 15 per cent. of people would want their relatives to say no. I do not believe that every time that 40 per cent. see a newspaper, television or soap opera storyline about the fact that the lives of three people per patient can be saved and transformed by an organ donation, they do not regret saying no for understandable reasons at a time of grief. Were those people sought out and asked whether the current system left them in a bad position? I cannot find evidence from the summary report that they were. Will the Minister reflect on whether that was done and, if it was not, whether the report and evidence base is appropriately balanced?
Paragraph 1.12 of the report states:
“We heard support from members of the public and patients’ groups for the principle of informed consent”.
The ethics committee clearly specifies that it is not informed consent. Unfortunately, in chapter 1 of the report, the taskforce does not point out that that is the wrong question to ask people. I support informed consent when it is appropriate, but I do not support relatives guessing what authorisation they should give at the cost of other people’s lives.
Paragraph 1.13 of the report refers to faith leaders:
“some faith leaders we spoke to warned of the potential for provoking anti-donation feelings and even active anti-donation campaigning.”
There is no evidence—most faiths support organ donation—that any faith would overturn its principles and say from the pulpit that because saving lives is now the default position everyone should opt out. The report does not suggest that faith leaders said such a thing; it is just a remark. In fact, we know from campaigns against animal research that having an active campaign provides the opportunity to put the merits of the issue—it raises the profile of the cause and is educative.
Finally, in my critique of the report, I want to draw attention to a bias. The report states that the taskforce is concerned—and I recognise this concern—that, under an opt-out system, some people may not want to donate, but would be too apathetic or disorganised to opt out. I do not think that the taskforce means that in a judgmental way, but those are the terms that it uses. Such people might suffer a loss of autonomy if their organs were used because they had not registered an opt-out or informed their families—under a soft system the families would be asked if there was an unregistered opt-out—of their decision. There would be a risk of a loss of autonomy, and if there were a small number of such people, that would be a negative thing. I accept that.
That is not the only question. There is no mention in the summary report of a second loss of autonomy which is even greater and costs lives. The first loss of autonomy that I mentioned saves lives: on the one hand, there is a loss of autonomy but, on the other, lives are saved. I would like to put on the record the fact that that may well be a price worth paying under an opt-out system. What about the people who, like me, under the current system, value the opportunity for our organs to be used after death and do not like the fact that someone could be asked, “What do you think?” In addition, what about the all people who, unlike me, are too apathetic or disorganised to get themselves on the organ donor register—I exclude the hon. Member for Eddisbury from that, because he has brandished his donor card—but who would want their organs to be used? Up to 40 per cent. of people—not just a handful—would find, looking down on us, that their organs were not used. That is a loss of autonomy far greater than the one feared under the opt-out system, and it costs lives. That is not mentioned in the summary report.
I cannot understand why the report does not take a balanced view of all three of the issues I have mentioned. I feel strongly about this issue, because so many people die while waiting for organs that one expects the taskforce in the summary report at least—the matter may be mentioned in the annexes—to ensure that its sample and consideration is not biased. I do not think that any of the individuals on the taskforce were biased, but I think that there was a loss of overview on those points. As I have not had a chance to talk to the taskforce, if it writes to me and says that I am wrong on some of those points, I would put it on the record, that I would regret that I misrepresented the matter.
We have heard that the Government’s plan is to wait and see if their existing proposals work, and I wish them well. Despite the drawbacks of the report, it is difficult for me to argue while on drug classification and other things, the Government should take the advice of their expert advisers, they should not heed the advice of their expert advisers in this case. However, as I have said, I caveat that with some questions about their methods. It is understandable that the Government are
going to wait and see. I cannot speak for other organisations and I do not necessarily speak for my party, but, personally, I accept that we will now have to wait for an opportunity to debate the matter again and have a free vote on it.
I wish the Government well in their efforts, but, sadly, I do not think that we can be optimistic about getting the 50 per cent. increase in donor rates. Some 10 years ago, I introduced a private Member’s Bill on the matter and was told, “There are a number of things happening, so just wait and see. We’re going to do our best.” The Government did do their best, but there has been no change. After the Human Tissue Act 2004, we were told, “Just wait and see; a significant improvement will occur by these means.” So far, that significant improvement has not been made, although there have been improvements in some areas.
The National Kidney Federation and the all-party kidney group produced a transplant manifesto, which the Government welcomed. Short of opt-out, the manifesto requested a number of things that are being implemented as, indeed, are the recommendations from the taskforce’s first report. I am not confident that even if those proposals were implemented, they would significantly increase the number of organs available. The limiting factor is not capacity in the system at the moment; it is the relative refusal rate of 40 per cent. No matter how many organ donor retrieval teams there are or how many transplant surgeons there are, there will not be an increase in cadaveric organs while there is a relative refusal rate of 40 per cent.
In Spain, they do both. They have an opt-out system, and then they layer on all the other things we are planning to implement. I hope I am wrong and that layering on these things without an opt-out system will bring down the relative refusal rate because there will be transplant co-ordinators who will do it better. However, I think intensivists are doing a good job already. The prospective donor audit has shown the 40 per cent. threshold to be stubborn—a little bit of progress has been made—because the question is different. Under an opt-out system, people would say to relatives, “From the register, there’s no reason to believe that your loved one did not want to save lives with their organs. Do you know of any unregistered opt-out, otherwise we plan to save lives with these organs?” Under the current system, people have to say to relatives who are at the height of their grief, “Can we have permission to take organs from this body? We don’t know what they would have wanted.” Relatives naturally go with the status quo. Studies show that relatives cite views such as, “Surely he’s suffered enough. We don’t really want the body interfered with.” That is entirely understandable. However, it is cruel to put the question to relatives in those terms. Those who speak to the relatives do not want to put pressure on them or put them under duress by mentioning that there are other grieving relatives who are watching someone who needs that organ die. I understand that view, but while we have these systems, we will have a problem. Elizabeth Ward, who invented the kidney donor card, has long supported an opt-out, even though it would sideline her creation. We ought to bear that in mind.
I mentioned another concern in an intervention: strangely enough, getting more people on the organ donor register, has not made any difference in the past. One would think that if relatives were told that their loved one is on
the organ donor register, it would have an impact. However, it does not seem to have done so, unless it has maintained the donation rate, which would otherwise drop. Although I hope that people will sign the organ donor register and discuss it with their families, I remain concerned that that will not resolve the problem. People have asked me whether the 15 million names on the register are really 15 million different people. What is the quality of that data? Efforts have been made to “clean” the data, and perhaps that will show a drop in numbers if it truly works. However, I cannot believe that a quarter of the relevant population is on the register. Relatives hardly ever refuse to give consent when they know of a registration or a donor card, but yet the number is still 40 per cent. It just does not add up, and I have never understood why that is the case.
In conclusion, I welcome the debate, but I regret the fact that so few hon. Members have attended it—there are all sorts of priorities on their time at this point in the year. However, at least we have had the debate, and I am grateful to the Minister for the way in which she introduced it. I have enormous respect for the way in which the Prime Minister and the former chief medical officer were prepared to say that, on the basis of the evidence, their previously held view was not the right one. We should have more of that in politics and we should not criticise as a U-turn something that we have called for. I am grateful for the way in which the hon. Member for Eddisbury put his side of the argument. I know that he takes a different view, but I hope that he will agree that when this returns to the House, it must be given a free vote. This is not something that can be easily included in party manifestos to justify a Whip, nor is it something that will persuade those of us with strong views either way to obey a party position.
4.1 pm
Dawn Primarolo: I would like to respond to the points raised and I thank hon. Members for their measured and thoughtful contributions to what we all find a challenging and finely balanced debate. I start by reminding colleagues that the number of possible donors each year is between 2,000 to 3,000 people. That number is getting smaller because, thankfully, we continue to see a reduction in deaths from accidents—especially road accidents—and strokes. Increasingly, there is better care for patients with major brain injuries.
We have looked at various issues addressed by the taskforce. The hon. Member for Oxford, West and Abingdon (Dr. Harris) asked about balance and posed the question of what should come first—opt-out and then reforms, reforms and then opt-out, or a combination of both. It is worth noting that Spain had an opt-out system for 10 years from 1979 without any significant effect on the rate of donations. Significant changes in Spanish donation rates occurred only after the introduction of infrastructural and other changes in 1989—changes on which the taskforce based its recommendations in the first report.
I will come to the question about the point of the kidney card, the donor card and the register, but first I want to comment on that figure of 40 per cent. for families who refuse consent, which was also mentioned by the hon. Member for Oxford, West and Abingdon.
When families are aware that their relative wanted to be a donor and had registered on the system, 90 per cent. agree with donation. That takes us back to the point made by my hon. Friend the Member for Birmingham, Edgbaston (Ms Stuart) about the importance of focusing on the bereaved families and trying to be understanding of them.
I tried to clarify this issue during the debate. Yes, there was the old donor card, but as hon. Members have mentioned, under the Human Tissue Act 2004 that requires lawful consent. Where that lawful consent exists—the hon. Member for Oxford, West and Abingdon referred to a figure of 40 per cent.—there can be an override, not in law but in practice. Because the support of the family is needed to get the appropriate medical and social history, in practice, clinicians will not proceed. That is not a matter of law; they will not proceed in the face of strong family opposition. Therefore, it is not as simple as stating the case one way or the other. Like other hon. Members in the Chamber, I have held various donor cards. I am on the register and, should a tragic event ever occur, I have taken the precaution of making my wishes absolutely clear—as has my husband, who is also registered—and those wishes are to be adhered to.
There are ways of proceeding but it is not a straightforward issue. From international evidence, we know that two crucial things are needed for delivering consent. As well as making the donor’s intentions known, we must have a fully trained professional work force to ask the relatives for consent, and we must ensure that the family have as much time as they require. The taskforce made those recommendations and both are being delivered on. That is crucial.
Dr. Evan Harris: Will the Minister give way?
Dawn Primarolo: I will deal with the next point and then I will be happy to give way to the hon. Gentleman. He raised a question regarding presumed consent or opt-out, and informed consent. I agree that opt-out is a better term, and that is what we should concentrate on. He went on to say that doctors would not themselves opt out; well actually, they do, because they are not happy with aspects of the current law. That is not because it is not clear enough, but because of the other support that is required. Those factors are all closely interwoven.
In response to the taskforce, the Government have looked at all the arrangements and the points that were identified regarding what needs to be done in the system, and I will return to those briefly. We must ensure that we get people on the register and provide the sort of work and interaction that is necessary in the hospitals—particularly regarding relatives—to follow that through.
The hon. Gentleman raised an interesting point about asking those families who had said no whether they felt the same retrospectively, particularly after being informed about what might have happened had they given consent. That is a terrible thing—before I became a Member of the House I researched this subject, and I remember thinking that it was such a difficult thing to do. The hon. Gentleman knows that the subject is extremely difficult, and is probably aware that Dr. Maggie—
Dawn Primarolo: Thank you. Dr. Maggie Spue has published some limited information on that. He will be pleased to hear that she will be joining the Department of Health research group to undertake further research in that area.
Towards the end of his remarks, the hon. Gentleman said that we would never achieve anything without opt-out. To paraphrase, he said that “The Government are pursuing a policy of wait and see.” That is not true. The Government are pursuing a policy of making the changes now, as rapidly as possible, with the finance—I will come on to answer the questions asked by the hon. Member for Eddisbury (Mr. O’Brien) about what that is—and of keeping progress under review, because of the important points that the hon. Member for Oxford, West and Abingdon made about the people who die without an organ being donated. We are not closing off any option. This is a very difficult situation. What comes first? Actually, it is not a question of what comes first. Intensive work is needed, particularly in hospitals with clinicians and families.
Dr. Harris: When I said, “Wait and see”, I did not mean, “Wait, do nothing and see.” I said to do all these things and then have a watching brief, as the Minister has said. We are at one on that. I did not criticise it. May I take her back to the relative refusal rate and the register? Could she help me with the mathematics of this? We know that only 10 per cent. of relatives refuse when someone is on the organ donor register, but otherwise a total of 40 per cent. refuse. How is it that the relative refusal rate was 40 per cent. when 5 million were on the register and it is still overall 40 per cent. when 15 million are on the register? Surely, for those 15 million, the 10 per cent. figure should operate, which should bring the average down. I cannot understand how that works and why the increased registrations are not leading to a significantly reduced overall relative refusal rate.
Dawn Primarolo: I can say to the hon. Gentleman that the situation is improving and I am happy to write to him to give him an explanation with regard to the figures that he is using, the timeframe, 1992 and the arrangements in that respect. We are seeing progress, but let us be clear; let us not understate the challenge that we face. In particular, the public debate needs to continue on why people should be on the register and why they should make it clear that they are on the register. There needs to be greater understanding generally of the importance of that for individuals and their families, should they find themselves in this position.
The taskforce set out clear recommendations. I thought that I had covered them, but I am happy to repeat them briefly for the record. The hon. Member for Eddisbury wanted to know exactly what we had done. There were clear recommendations, first, on identifying all potential donors and increasing the number on the register; secondly, on how to develop stronger local systems to optimise donations from both living and deceased patients; and thirdly, on how we can strengthen the organ retrieval arrangements throughout the country to ensure that we maximise every possible opportunity.
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