HL Deb 19 May 1995 vol 564 cc783-90

3 p.m.

Lord Finsberg

My Lords, I beg to move that this Bill be now read a second time. Before my noble friend Lord Clinton-Davis leaves us, I hope I may say that this may be a poor Bill but it is mine own. A little neglect may breed mischief … for want of a nail, the shoe was lost; for want of a shoe the horse was lost; and for want of a horse the rider was lost". But for want of a kidney, a life was lost. So might Benjamin Franklin have ended his maxim. How many lives could be saved by simple transplantation? How many people could have their sight restored by transplants? Hundreds of our fellow citizens die each year for lack of a new organ. I am informed that there are some 6,000 patients awaiting transplants to save their lives or to improve their quality of life.

Why have I introduced this Bill? I decided to leave my body, for what it is worth, for research purposes or for transplants, and to put that in my will. I only recently discovered that that express decision in my will could be frustrated by means of any member of my family or others objecting to it. My wife is in the same position. However, if she did not hold a similar view, she could say "no", or I could say "no" if she predeceased me. I find that an unacceptable state of affairs. Of course I understand the emotions of relatives when a loved one has died, but I suggest that if they try to overturn or interfere with a firmly expressed wish that has been made before death, that is showing disrespect and unkindness towards the person who has died who was fully conscious of the decision he or she wanted to take, and have taken after death.

I am afraid that, although I understand some people's deep emotions on the subject, I do not believe that they should be allowed to override the express wish of the deceased. It is therefore this one simple issue that I wish to see changed so that a donor's wishes would be paramount. The permissive expression in the 1961 Act should be changed to a mandatory one. Clause 1(4) seeks to make this wish crystal clear.

I wish to explain in a little more detail what the Bill, as drafted, seeks to do; namely, to impose an obligation on the person in charge of a body to carry out the wishes of the deceased with regard to organ donation, by amending the Human Tissue Act 1961. As I have said, this is achieved in Clause 1 by inserting the word "shall" in place of the more equivocal "may". By deleting paragraph (b) in subsection (2) and inserting a new subsection (3A) the Bill seeks to do what I have suggested, which is to stop any subsequent intervention to prevent the tissue donation. Paragraph (a) remains because it allows for a change of mind on the part of the person who is considering the donation of his own tissue.

The obligation is also subject to the provisions of subsections (5), (6), and (9) of Section 1 because they deal with the understandable possible need for an inquest by a coroner or, in Scotland, a procurator fiscal, and the exemption of someone who is charged with the care of the body only for its burial or cremation.

I know that the NHS organ donor register is doing tolerably well. Up to April some 150,000 people had joined it. However, I wonder how many of them realise, having signed and carried that small card, that it is no better than a piece of waste paper if someone objects.

The Bill has the support of my noble friend Lord Walton of Detchant, who apologises for not being present. He is abroad. He speaks with all the authority of a former chairman of the General Medical Council. The Bill also has the support of the British Medical Association. The council of the BMA, upon the recommendation of its medical ethics committee, agreed that a donor card can be considered an advance directive which cannot be vetoed by relatives. Therefore the Bill has widespread public support, and support among those in the medical profession about whom there has occasionally been doubt as to whether they all want this measure.

I hope that the Bill will receive a Second Reading and will proceed as soon as possible so that there is a chance of it passing into law this Session. I commend the Bill to the House.

Moved, That the Bill be now read a second time.—(Lord Finsberg.)

3.6 p.m.

Baroness Gardner of Parkes

My Lords, I am very pleased that my noble friend Lord Finsberg has brought the Bill before the House today because when it becomes law it could do so much to enhance the lives of those whose quality of life and often their very lives depend on receiving a transplant.

Until I discovered that the Bill was before us I did not appreciate that at the moment of your death your body no longer belongs to you and the consent of others has to be obtained to honour your wishes. The noble Lord explained that point very well.

The donation of corneal transplants seems to be less fraught, and corneas are more willingly given than any other organ. Perhaps that is because people feel that it is a less invasive procedure or because they are conscious of how important sight is to every one of us.

Let us stop and think about those hoping—longing—for an organ to be available. At the Royal Free Hospital, the NHS trust of which I am chairman, we carry out a large number of kidney and liver transplants each year. We presently have 160 patients waiting for a kidney. Last year we were able to carry out just 41 kidney transplants, one-quarter of those needed. That was due simply to the lack of donor kidneys.

Stop and think a moment more about renal dialysis and the procedures involved. Each year renal dialysis costs the NHS per patient five times more in a hospital and two to three times more at home than the necessary and continuing care of a patient who has had a kidney transplant.

Think again. Costs are not the important feature of treatment. Receipt of a new kidney transforms the whole way of life of a patient. The quality of life is restored, and the time, strains and even the hazards of constant dialysis are no more.

The waiting list for kidney transplants has risen in a linear fashion in the past 16 years. Kidney transplants peaked in 1990 and numbers have fallen since then due to a lack of donors.

As a dentist I am aware of the great increase in maxillo-facial work since the introduction of seat belts and crash helmets. There are now fewer fatal traffic accidents, and I welcome that. There has been an increase in voluntary donors, but not an equivalent number. So it means that we need more voluntary donors. The Bill goes some way towards ensuring that those who intend their organs to be offered will have their wishes met.

I should like to see introduced in the UK, with the essential safeguards, the reverse system whereby a patient would have to opt out rather than opt in to organ donation. Relatives and loved ones are often in a highly emotional state at the moment of death. Even when death is expected, it always comes as a shock to those who suffer the loss. At such a sensitive moment, it is inappropriate that anyone should be asked to make a calm, clear, rational decision about organ donation. That would be the great merit if the Bill becomes law. I support it.

3.10 p.m.

Lord Rea

My Lords, the subject of this small but useful Bill is not a party matter. Therefore I speak from a personal viewpoint. However, I could hazard a guess that even if the Benches behind me were full, and it was Question time on a Tuesday instead of a Friday afternoon, the great majority of noble Lords on those Benches would accept the Bill and thank the noble Lord for introducing it.

As the noble Lord explained, there is a serious deficiency of organs for transplant in the UK compared with the need. The noble Lord gave the figure of 6,000 people—according to my information, the figure is 5,700; it is near enough —who suffer from conditions for which organ transplants work best, and in many cases are the only solution to their problems.

In October 1994 there were 4,976 patients waiting for kidneys, 282 for hearts, 164 for lungs and 112 for livers as well as several hundred waiting for corneal grafts. In 1993 185 people died waiting for heart, lung or liver transplants which could have given them years more useful life. Patients with kidney failure in need of transplants can be kept alive with intermittent renal dialysis, but that is a heavy burden on both the patients and the National Health Service, as the noble Baroness, Lady Gardner of Parkes, pointed out from her position as chairman of the Royal Free Hospital trust.

A successful transplant ends that expensive and tedious procedure—it is one which can give rise to a number of complications. As both the noble Lord and the noble Baroness said, there is a huge shortage of donors. People who might previously have died from a number of conditions can now be saved. In particular, the situation arises, as the noble Baroness mentioned, because there are fewer fatal accidents on the roads affecting healthy people. That is one of the effects of the seat belt legislation. From another point of view, that is wonderfully good news. It testifies to the wisdom of both Houses of Parliament in passing the compulsory seat belt legislation 10 or 12 years ago.

Sadly, 30 per cent. of relatives refuse permission regarding patients dying in intensive care units—patients who in life have not expressed a wish one way or another. In 6 per cent. of cases, the medical nursing staff do not even ask relatives, often because to do so would seem too intrusive in the very tragic and emotionally fraught circumstances of such deaths.

However, some countries operate an opt-out rule—Belgium and Austria are examples—in which the patients while living or relatives after death have to register an objection to prevent the organs of a deceased person being used where applicable. Here, and in most other countries, the opt-in principle applies before an organ of a deceased person can be used. Either that person in life or relatives after death have to give permission. That means that a number of organs are lost because even if the patient would have been willing, he was not carrying a donor card at the time of death or the relatives cannot be traced. Many in the health professions feel that the opt-out principle should be enacted in legislation in the UK. That would increase the number of organs available for transplant. I tend to think that way, but the arrangement is strongly criticised by many, including a sizeable minority of doctors. That is especially those involved in transplant surgery, because they are face to face with the fraught emotional circumstances surrounding the patient's sudden death or impending death.

The noble Lord referred to the computerised list of donors which was initiated in October last year to supplant the donor card scheme. Sadly the scheme has not been as productive as it might have been. Perhaps the noble Baroness has figures to show how it has improved on the scheme. It is early days yet and it has only been operational for about six months.

The noble Lord's Bill deals with a small group of donors who have indicated willingness to donate organs on their early demise, should it happen, but whose relatives object. The noble Lord did not give an estimate of the numbers, but in principle it seems quite wrong, as he said, for the deceased person's wishes to be overturned. It would be both an affront to that person and a negation of the interests of society as a whole.

Some patients in intensive care units are brain dead, but they can be kept alive by artificial ventilation for days or even years. I can understand how some relatives might object to a patient being kept artificially alive until the right moment for the removal of an organ. But in such cases, if the patient had previously wanted their organs used after death, I feel that the relatives' concerns should not prevent the use of that organ going ahead.

This small Bill is a useful measure which will be of assistance in a small way but perhaps it will point others in a direction which will further improve the supply of organs for transplant. I thoroughly support it and hope that the noble Baroness will give it her approval so that we may give it a speedy passage through the House.

3.18 p.m.

The Parliamentary Under-Secretary of State, Department of Health (Baroness Cumberlege)

My Lords, I very much welcome the commitment of my noble friend Lord Finsberg to the increase of organs for donation. As he is a former distinguished Minister in the Department of Health, it is perhaps not surprising but nevertheless encouraging that he has not forgotten the challenges which face the department and indeed the NHS as a whole. One of those challenges is to ensure that there are a sufficient number of donated organs so that very sick people in need of treatment can receive it. In my view, there is no nobler bequest a person can make when they leave this world than the gift of life to a fellow human being.

I welcome too the opportunity to explain the Government's position. The Government are entirely sympathetic to the aim of the Bill, which is to ensure that after people die their organs are donated in accordance with their wishes. Nor is there disagreement about the nature of the problem which has prompted my noble friend to introduce the Bill—the shortage of donor organs for transplantation. This shortage is a matter of great concern to the Government. We have introduced a series of measures to deal with it, including the computerised NHS organ donor register which we launched last October.

Thanks to advances in medical science and the skill and dedication of surgeons, around 1,600 people receive kidney transplants; more than 300, heart transplants; and more than 500, liver transplants each year. There are more people alive in the UK with transplanted kidneys—11,000 —than in any other European country.

However, as my noble friend Lord Finsberg and the noble Lord, Lord Rea, mentioned there are currently more than 5,000 people waiting for organs—4,000 of them waiting for kidneys. This is due not to lack of money or clinical expertise but to a shortage of donor organs. Vastly improved road accident figures and improvements in neurology have resulted in the pool of potential donors shrinking. Usually, only people who have died from sudden brain injury are suitable. This has led many people to seek ways of increasing the number of donors.

The underlying philosophy of the Human Tissue Act 1961 is that body donation should be a positive, voluntary choice, an act of altruism, the "gift of life" freely given. The Act provides that organs may be taken if the person who has died requested it unless there is reason to believe the request was subsequently withdrawn. The Act goes on to provide that organs may be taken even if that person did not request it unless there is reason to believe either that that person objected or that their relatives object.

A number of people view these provisions, particularly the provision for relatives to object, as restrictive. Indeed, a recent survey showed that about a quarter of usable organs are lost because the family object, although it is almost unknown for them to do so if they know that the dead relative wished to donate. My noble friend, quite reasonably, is looking for ways to overcome that problem.

I am aware that some people support a "presumed consent" or "opt-out" system under which anyone's organs may be taken unless they have registered their objection. This is seen by others as a drastic step, and the Government have consistently opposed it. This is because it is contrary to the philosophy of altruism, is not supported by a majority of the population, and because there is no clear evidence from countries where it is practised that it results in more transplants.

The noble Lord, Lord Rea, asked about the figures for relatives who refuse donation. Last year we carried out a MORI survey which indicated that the numbers refusing are falling. The figure is now 26 per cent. The survey gave a range of valid reasons. We do not believe that opt-out would significantly reduce that figure.

Although an opt-out scheme is not the intention of the Bill, its effect would be similar. It would require any person who had died to be made available for organ donation save where there was reason to suppose that that person had objected. Preventing relatives from objecting may look perfectly reasonable but would be difficult to achieve in practice. The medical profession generally takes the view that it has a responsibility for the welfare of those grieving for their loved one. That is why its members invariably consult the family if they are minded to take organs and will not proceed if there are objections. They are unlikely to cease doing so even if the law is changed.

Can your Lordships imagine a doctor trying to take organs against the wishes of the distraught parents of a young person killed in a road accident or a pregnant woman whose husband has just been killed? I am sure your Lordships can imagine the damage that might result both to the family and the organ donor scheme. I understand that this has happened in some European countries.

Doctors also attach great importance to being able to talk to relatives about any factors in a potential donor's life which might make them unsuitable for donation—for example risk of HIV infection. All organs are tested for disease, but with HIV there is a "window period" when the virus is present but may not be detected. Discussion with the family reduces the chances of such infection being unwittingly passed on.

The Government are fully committed to organ donation, and increasing the supply of organs for transplantation is a priority. They share the desire to reduce, and if possible eliminate, objections to donation. We are approaching this problem with a wide range of provisions. We know relatives rarely object if they are aware their loved one wished to donate, so our publicity campaigns, including TV and other media, encourage people to record their donor wishes and inform their families of their wishes.

We agree with my noble friend Lady Gardner that kidney transplant should be the treatment of choice for end stage renal failure, and cost is not the factor holding us back. It is very important to encourage more donors. That is the direction of this range of measures.

As my noble friend Lord Finsberg and the noble Lord, Lord Rea, told the House, people can now record those wishes on the NHS organ donor register at Bristol, which we launched last October. The noble Lord, Lord Rea, asked about the progress of that scheme. Already nearly a million people have applied to join. Because it is computerised, hospitals can obtain details of potential donors instantly and then discuss the donations sensitively with the relatives. On that point, we are encouraging the training of hospital staff in the most effective ways of approaching families.

My noble friend Lord Finsberg was very concerned that those who register may not realise that their views can be overridden. That is why the leaflet about the register that we distribute encourages donors to discuss the issue with their very close relatives.

We have also introduced a reimbursement scheme for hospitals whose intensive care units look after potential donors, and have established organ retrieval teams to ensure that all donated organs are retrieved. As your Lordships may know, throughout the world the numbers of organ donors are falling. But in the United Kingdom the number of organs per donor is now increasing and of course it is possible for more than a dozen people to benefit from one generous person's gift of life.

In conclusion, I am most grateful for the interest shown in this vitally important subject. I am grateful to my noble friend for seeking to increase the supply of donor organs. That desire is shared by the Government. However, as I explained, a law forbidding objections by relatives will not stop doctors consulting or observing their wishes and it would permanently damage the scheme. We believe that with encouragement more and more people will become committed donors and will ensure that their families know their wishes. The Government will therefore continue to promote organ donation through publicity and education and will encourage people to join the NHS organ donor register and discuss their donation wishes with their families.

Finally, I should like to pay a tribute to all those courageous relatives who, in the midst of trauma and tragedy, have been prepared to look beyond their personal anguish and sorrow and give the chance of life to another. That is truly an act of altruism—the gift of life.

Lord Finsberg

My Lords, I am grateful to those who participated in the debate: my noble friend Lady Gardner and the noble Lord, Lord Rea. I, too, have views on opt-out but did not consider it right to put such a provision in the Bill.

I do not believe that talking to many relatives would disclose much about HIV. The sadness of HIV is kept very much inside the feelings of the individual. I do not think that it would help. I should have thought that the view now of the ethical committee of the BMA would have changed the point of view of the overwhelming majority of the medical profession.

With regard to the issue of grieving relatives perhaps I may tell the House that it had been agreed that when my first dear wife died her organs would be donated; but because she was so riddled with cancer there was no possibility of that. However, I am bound to say that I should not have put my feelings above her wishes. Anyone who tries to say that he or she would do so is, I think, being very insincere and very unfair.

I am grateful for the general interest and support. I hope that the Bill will be given a Second Reading and will proceed. I hope also that the less than enthusiastic point made by my noble friend the Minister may, by discussion, possibly be changed in time for the Bill to become law. I commend the Bill to the House.

On Question, Bill read a second time and committed to a Committee of the Whole House.

House adjourned at twenty-nine minutes past three o'clock.