§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Clelland.]
2.33 pm§ Dr. Evan Harris (Oxford, West and Abingdon)I am grateful for the opportunity to raise the issue of organ donation and transplantation at what, considering the events of the past few weeks, is an extremely topical time. I am sure that the House is grateful also for the opportunity to debate the matter.
We must remember that, only yesterday, a 15-year-old girl, known only as M, was given a heart transplant at the Freeman hospital in Newcastle. The case reached the news because a judge gave authority for the operation to go ahead without the consent of the minor because it was felt to be in her best interests. It is not for Members to second-guess the views of a judge who is in possession of all the facts, but we recognise how difficult such cases can be for all concerned. I pay tribute to those involved, and our thoughts are with the girl. We wish her a full recovery from the operation and good progress with her transplant.
That case demonstrates how much interest the media take in these issues, which can be a force for good or for harm. We must ensure that no matter what disagreements there may be about how we approach some of the policy issues, the message that we send from the House is that organ donation is a gift of life, and the more organ donations there are, albeit in tragic circumstances, the more lives can be saved. Whether hon. Members support my view or take a different view on the nuances of the issue, we are all agreed that the maximum number of organ donations will mean saving the maximum number of lives in circumstances that are difficult both for the donor families and the families of recipients.
Just last week, there was great media interest in the case of a donation apparently made with the condition that the recipient must be white. The Government have begun an inquiry into the matter. I know that the Minister will be reluctant to comment in detail on the specific case, but some general points can be made.
It should be pointed out, as it has been in the media, that the arrival of television cameras outside the Northern general hospital might have given the impression that the hospital was somehow involved in racial discrimination. If that is the perception, it is unfair because only the contract of the transplant co-ordinator was held by the hospital. None of the clinical staff there were likely to have had anything to do with the apparent acceptance of an organ to which such a condition was attached. I believe that the organ subsequently became available in another hospital and, if used, would have been transplanted into a recipient at yet another hospital.
I put it on record that the members of staff who are unable to comment because of the inquiry—and that raises questions about the freedom of staff to speak out following the announcement of an inquiry by the Secretary of State—can be reassured that hon. Members do not accuse them of any widespread discriminatory practice.
The policy that the Secretary of State has enunciated on the case is correct. We cannot accept organs to which conditions relating to the nature of the recipient are 763 attached—not because such organs cannot be used to save life, but because that would bring the process of donation into disrepute. If that happens, there will be a negative effect on organ donation, which is the key factor. In all our debates, we must bear in mind that the aim is the donation of the maximum number of organs in appropriate circumstances without inequity or discrimination.
News of such conditions should never reach the transplanting team. Issues of conditionality should be dealt with by the retrieval team and tackled at that point. Such information would put transplant doctors who have a dying patient and a tissue-typed organ in an impossible position.
Guidelines on the retrieval of organs are needed. The Government and, indeed, the system would benefit from a general duty of non-discrimination in the national health service on the grounds not only of race but of age, sex, sexuality and disability—except, of course, where clinically justified. Liberal Democrats tabled amendments to the Health Bill to that effect. Although the Government did not accept them, we look forward to seeing how they will take forward the issue of tackling racial discrimination in the NHS.
In the short time available, I shall raise two substantive issues about how we identify organs for donation and what sort of consent scheme should be used. There are two separate but linked questions. First, there is the right of relatives to give consent, to have their consent sought, or to veto or place conditions on the donation of an organ of a loved one who is in a position to donate. That often concerns young people who have suffered sudden traumatic head injury.
Secondly, there is the question of the nature of consent for the potential donor—whether there should be an opt-in or an opt-out system. The opt-out system is often called presumed consent, and operates in many other countries in Europe. Whether there is an opt-out or an opt-in system, there is still the separate question of the role of relatives, and in tackling that question, we must recognise what a difficult time it is for relatives.
Some relatives feel bad if they are not consulted and organs are taken against their wishes, even though it was the wish of the person concerned. Other relatives, who do not give consent because of the circumstances at the time they are asked, regret it for a long time afterwards because those organs might have been used to save other people's lives. I have never been in that position, and I never want to be. It is hard for Members to place themselves in that position.
I have had long discussions on that issue with John Evans, founder of the British Organ Donor Society, who meets and is in contact with hundreds of donor families. He feels strongly that relatives of a deceased person who is a potential donor have clear rights, and I respect his position absolutely. However, I think that there is a question whether the law in this area is clear. The British Medical Association has long had a policy of questioning whether it is appropriate for the wishes of the owner of the organs, as it were—the person whose organs are in question—to be overruled by relatives.
Last week, in part of the motion that was passed at the conference in Belfast, which I was pleased to propose in my capacity as a BMA member, the BMA reaffirmed that it questioned the ethics of allowing relatives to veto expressed consent, in this case under the current system, although we recognise that that rarely happens.
764 The law is unclear. The Human Tissue Act 1961 states that
the person lawfully in possession ofthe body of a potential donor may, if there is an indication that they wish to donate before they are in a position to do so, authorise the removal of those organs for donation. However, in case law it has never been clear who is "lawfully in possession" of the body. It was assumed at the time to be the hospital authorities, and the authority, Clare Dyer, says in her book that she believes that the framing of the rest of the 1961 Act—especially section 1(7), which allows the hospital authorities to delegate certain responsibilities—makes that clear, but custom and practice have led the profession to approach relatives as though they were in possession of the body.Sooner or later, that confusion will have to be cleared up; otherwise, there may be repeats of some of the difficult situations that occur, where conditions may be attached or where there may be a disagreement among relatives about whether the pre-mortal views of the donor should be respected.
However, I do not believe that the relatives' veto is the key issue, because in cases where there is pre-mortal expressed consent, such as the carrying of a donor card, relatives very rarely refuse. The difficulties of the retrieval team when a distraught set of relatives opposes their actions do not make it worth the candle to pursue organ retrieval. We must remember that the integrity of the whole system is paramount.
Nevertheless, there is a problem. Although we know that very many people would be willing to donate their organs—75 per cent. of the general public express a willingness to donate—only about 17 or 18 per cent. of them carry cards. Therefore, there are many people who could donate whose views are not known, the majority of whom are likely to be in favour of donation. Those people's relatives are asked to second-guess the views of their loved one at a very difficult time, when they are distraught and soon to be bereaved. In those circumstances, donation is refused in about 35 per cent. of cases, although there are regional variations in that, and there may be good practice that could be extended in approaching relatives in such circumstances.
Presumed consent—whereby people are given an adequate opportunity to opt out of donation—may well be a way around that problem. But that opportunity to opt out must be adequate, otherwise faith will be lost in the system. If there is a presumption of consent, the 35 per cent. of refusals may dwindle to the mere handful that occur when there is expressed consent.
The BMA recently changed its position—indeed, it did so last week, in the motion that I proposed—to support lobbying the Government at least to consider a change in practice in this respect. Such a change can be undertaken only if two conditions are fulfilled. It must be felt, on review of all the evidence, that it would make a difference to retrieval rates. I do not believe that it is worth our debating this at length, and debating it again every time an organisation changes its views, if the evidence from other parts of Europe and the likely evidence from this country is that it will not increase the number of available organs.
765 There is clear evidence that the matter needs to be examined. Professor Ian Kennedy's paper in The Lancet was quite clear. He wrote:
A change in the law"—to a system of presumed consent—thus achieves the dual effect of increasing the supply of organs and lessening the distress of relatives. Those who have moral objections to it must produce convincing evidence that the harm that would follow such a change would outweigh these clear benefits.Those benefits are more organs available for transplantation and fewer deaths among those who are awaiting transplants.Recent figures show that the number of people dying while on waiting lists for heart, liver, lung and other organs has increased from 200 in 1997 to 218 in 1998. That does not include those people who never reach the waiting list because it is felt, given the supply of organs, that they are not the best candidates. It does not include those people waiting for kidney donations who die on the waiting list. The number who do so is more difficult to ascertain but it is felt that it is at least 1,000 each year. A large number of people on dialysis are waiting for a transplant that could save or transform their lives.
There is a lot at stake and the first test is whether a change to presumed consent, if done in an appropriate way that does not scare or worry the public, can result in an increase in the number of organs that are available for transplants. I believe that the evidence is that it can be done.
The recent consensus statement from the Council of Europe takes up this point and the view is that it is a question that should be examined in each individual country. The statement reads:
Presumed consent laws, when fully accepted, seem to benefit donation … It is advisable to ascertain the opinion of the public and health professionals about presumed or informed consent of organ donation before considering legal changes that might be potentially detrimental.I understand that view. The evidence from Europe is mixed. However, there was a change in the Belgian system in 1986, and a large increase in the number of available organs thereafter. That applied only to the centres which switched to the new system, although those that did not were subject to the same levels of car accidents and of national publicity. It is clear from the evidence that supply increased in Belgium.If there is evidence that the number of organs that could be used and the number of lives saved would be increased, I think that the Government should explore the matter. However, I accept what the Government have said in the past and may say again. They have said that it would not be worth changing the law until there was near universal support for such a change from the key people involved. It would not have been worth my bringing the proposal to the Government had the BMA, for example, stuck to its previous line and not voted overwhelmingly in support of change. I recognise that the Royal College of Nursing is not at present convinced of the need for change. The public would need appropriate education so that such a scheme became acceptable.
At the same time, there is a change in the view of patient-recipient groups. The National Kidney Federation voted by 7:1 in Blackpool only last weekend to press the 766 Government at least to review the situation publicly and openly so that we can achieve consensus and consider a move to presumed consent. It must be recognised, however, that the surgeons may not share that view. The view of the recipient side has to be kept at arm's length in these considerations because there are vested interests for recipient patients and their surgeons.
I ask the Minister whether he will at least consider exploring this country's data once again and build on the research and review that has been carried out by the Council of Europe. I ask him to consider, for example, whether the Belgian system could be usefully transferred to the United Kingdom to increase retrieval rates. If that view came from a consensus group, he might consider consulting wider groups, including the public, to ascertain whether a change in the system would be considered acceptable and would not have counterproductive effects that we do not want. People are dying while waiting. I hope that the Government will give urgent consideration to these matters.
§ The Parliamentary Under-Secretary of State for Health (Mr. John Hutton)I congratulate the hon. Member for Oxford, West and Abingdon (Dr. Harris) on raising the subject of the debate this afternoon, and on the general tenor of his remarks. He raised a number of issues of general policy on organ donation, and I shall come to those in a moment, but he referred at the beginning of his remarks to two particular cases. It may be helpful if I start by dealing with those.
The hon. Gentleman mentioned the case of a young girl who recently underwent a heart transplant operation against her declared wishes. It is not usually appropriate for a Minister to comment on particular cases in detail, as I am sure the hon. Gentleman understands, but under the existing law, the refusal of treatment by a young person may be overridden by parental consent or by the courts. The court will always give considerable weight to the child's views, but the paramount consideration must be the best interest of the child. I am sure that the hon. Gentleman would accept that in the case that he mentioned, the issue was not so much the donated organ as the child's ability to consent or not. That issue was resolved by the court in its decision.
The hon. Gentleman also referred to the recent case involving a kidney donated at Northern general hospital, Sheffield, which was highlighted in the press. The relatives of the deceased stipulated that they did not want the organ to go to anyone who was not white. The Government's view is that organs should not be accepted with conditions attached. As far as the Government are concerned, donated organs and tissues are a national resource available to anyone who needs them, regardless of race, religion, age or other circumstances.
We would expect that policy to be explained to potential donors or their relatives. Organs and tissue should not be accepted unless they are freely donated without any conditions attached. The NHS organ donor register, as the hon. Gentleman no doubt knows, specifically excludes any donor who wishes to attach conditions to his donation in terms of potential recipients. The only restriction allowed is on the organs or tissue that can be retrieved.
The hon. Gentleman mentioned his concerns about racism. The NHS is not exempt from the provisions of the Race Relations Act 1976. Racism and racial 767 discrimination have no part in a modern and dependable NHS or in modern social services. Ever since the Government took office, we have made clear our determination to tackle racism and racial discrimination whenever it occurs. That means investigating and acknowledging problems where they occur, and taking tough action to remedy matters.
As the hon. Gentleman knows, an investigation has been set up to discover what went wrong in that incident, and to recommend any further action that may be necessary to ensure that such an incident never happens again. My right hon. Friend the Secretary of State has made it clear that if legislation is needed to keep racism out of organ donations, the Government will introduce it.
In his wide-ranging remarks, the hon. Gentleman covered substantial policy issues relating to organ donation. From his own experience, he is aware that transplantation is usually the best and most cost-effective treatment for organ failure. We know that each year in the UK, about 2,500 organs are transplanted, but there are more than 5,000 people on the transplant waiting list. However, there is a world shortage of organs, so the problem is not unique to the UK.
Paradoxically, the success of other policies has exacerbated the problem. The main source of organs is from people who have died from sudden brain injury, such as a stroke or as a result of a road accident. The UK now has one of the lowest rates of road traffic deaths in Europe and that, together with advances in neurosciences, has resulted in a reduction in deaths from intra-cranial haemorrhage by about two thirds since 1970.
In answering the hon. Gentleman's points, I shall explain first how the current organ donation system works, in terms of the legislation and in practice. The legal position is quite clear. Under the Human Tissue Act 1961, if a person has recorded his wish to donate his organs, those organs may be taken when that person dies. If an individual's wishes are known, the hospital can authorise removal of the organs. The 1961 Act does not require the relatives or any other person to be consulted in those circumstances.
If the person did not record his wishes, the organs may still be taken if it has been established that the deceased, or his surviving relatives, do not object to that. There are a number of ways in which people can make their wishes known. They can carry a donor card, put their name on a computerised register or, most importantly, make sure that their relatives know their wishes. Ideally, each individual should make his or her wishes known in one or more of those ways.
In the United Kingdom, doctors will ask relatives if they may use the organs whether or not the individual had a donor card or was on the register. There are sound practical reasons for that. It is important to ask the family detailed questions about any aspects of the donor's health or life style that would make him or her an unsuitable donor. Those might include questions about sexual behaviour and any history of drug taking. Transplant co-ordinators say that, having put such difficult questions to extremely distressed relatives, it is often very difficult to ignore their wishes if they object to the donation.
Ignoring people's wishes provokes strong responses in families and, in turn, can damage short and long-term donation rates. For example, in France, which has opt-out legislation, a public outcry was followed by an alarming 768 drop in donations when a couple discovered that their son's eyes had been removed against their express wishes. That incident, which received widespread coverage in the media, was followed by a 20 per cent. drop in organ donation and a 30 per cent. drop in corneal donation. It took three or four years for the donation rate to recover. To reassure the public, the law in France was amended to require that relatives be approached when the wishes of the donor are not clear.
The hon. Gentleman argued that the current system allows the family to overrule the wishes of the donor and implied that many organs that could be donated are lost because of that. That is not the case and refusal is almost unknown when relatives know that their loved one wished to donate. I understand that there are refusals in less than 1 per cent. of cases.
§ Dr. HarrisI should put it on record that I made it clear that overruling is extremely rare when express pre-mortal consent has been given, and I certainly accept the Minister's figure of 1 per cent. or less.
§ Mr. HuttonI am sorry if I have caricatured the hon. Gentleman's argument. I did not intend to do so, but I thought that he was implying that requiring relatives to state their position on the donation somehow places an unnecessary burden on the present system. My point to him is that it is not a burden and refusal rates are less than 1 per cent. in those cases in which the deceased person has made his or her wishes known.
Potential donations are much more likely to be lost when families do not know the wishes of the deceased relative. For the reasons I have outlined, families must be consulted. Potential donors are usually those who have died unexpected, traumatic and sometimes untimely deaths. Some families find solace in the thought that their relative's organs will give life to others. I must emphasise that the majority of families—three out of four—agree to donation. If a minority find the idea abhorrent, do we really feel that the hospital should add to their distress by insisting on removing the organs? I am sure that the hon. Gentleman would not want to go that far.
Additionally, opt-out as it is run in many European countries does not exclude consulting families. In most countries, whether they have an opt-in or an opt-out system, hospitals will not take organs if the family of the deceased person objects. The consulting of relatives is, therefore, not a distinction between opt-out and opt-in systems of organ donation. I have to say to the hon. Gentleman that I am not convinced that introducing an opt-out system would solve the organ shortage in this country. Far from it; the most important factor in any donation system is public confidence, to which he referred repeatedly. All organ donor schemes depend on public support, whether they operate within an opt-in or an opt-out system. As he rightly said, there is no consensus on that issue among the public or the professions.
A survey undertaken in May on behalf of my Department asked which of those two systems people would prefer to have in the United Kingdom. It found that 50 per cent. were in favour of the current system, but only 28 per cent. were in favour of an opt-out system. There is a 22 per cent. net preference for the current system. 769 The rest of the sample—22 per cent.—expressed no preference at all. That is clear evidence that currently there simply is not public support for an opt-out system.
§ Dr. HarrisIrecognise those figures, and I have seen the poll. Given that bald question, that is the public's position at the moment, but if it were shown that such a change in the system could increase the number of organs donated—that is the key question—and therefore save lives, and if the question were restated in those terms, supported by a professional consensus, the figures might change. Had transplantation not been allowed 30 or 40 years ago only on the basis of a public opinion poll, a million or so lives might not have been saved worldwide through transplantations. Those figures should therefore be treated as a basis, not as an end.
§ Mr. HuttonIshall return to that point in a second.
Professional support is also crucial. Although the British Medical Association voted recently in favour of opt-out, the transplant field is clearly divided over the issue. Those who are most intimately involved in transplantation from day to day—those, for example, who ask the bereaved families, such as the members of the United Kingdom Transplant Co-ordinators Association and the Intensive Care Society—remain opposed to an opt-out scheme.
People in the field say that it makes little measurable difference what legal system is in place. Opt-out would not, in practice, make a difference to how families are approached about organ donation. It would not mean that organs would simply be removed without the knowledge of relatives. It would not mean that, where donors had not registered an opt-out, their organs would simply be automatically removed without talking to their relatives. The incident in France illustrates why a system that operated in that way would be unpalatable to the British public.
I agree that retrieval rates are affected by a range of issues and approaches. The fact that the legal position is not the crucial factor in high donation rates is illustrated 770 well by those countries that have introduced opt-out legislation. Different cultural attitudes to the disposal of bodies, greater provision of intensive care beds, more aggressive procurement policies, the number of transplant co-ordinators and road death rates all play an important part. Therefore, opt-out alone is not a solution to organ shortages.
In Austria, it was only when doctors were employed as full-time transplant co-ordinators to organise procurement at peripheral intensive care units that the donation rate increased substantially. It rose from 17 per million population when the scheme was introduced in 1986 to 37.4 per million population in 1990. In Belgium, the donation rates increased dramatically when opt-out legislation was put in place, but, prior to that, there had been virtually no donation system. It is also worth noting that both Belgium and Austria have at least double the road deaths that we have in the UK. In 1996, for example, Austria had 12.7 road deaths per 100,000 population, while the United Kingdom had 6.4.
The Spanish have one of the highest donation rates in Europe. It is widely accepted that that is because of the success of their transplant procurement system. That system has been adopted with equal success by several other countries. Finally, Italy, which has opt-out legislation, has a lower donation rate than the UK. In 1997, Italy had 20.7 kidney transplants per million population compared with 25.6 in the UK.
The numbers who register as not wanting to donate in opt-out systems are not insignificant. In the Netherlands, where an opt-out system was recently introduced, 9.3 per cent. of the population registered that they did not wish to donate. There will always be a proportion of the population, whatever system of organ donation is in place, who do not wish to donate their organs.
The aims of the Government's current campaign to maximise the number of organs available for transplantation—
§ The motion having been made after half-past Two o'clock, and the debate having continued for half an hour, MR. DEPUTY SPEAKER adjourned the House without Question put, pursuant to the Standing Order.
§ Adjourned at three minutes past Three o'clock.