NORS

HC Deb 07 November 1977 vol 938 cc444-56

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Frank R. White.]

10.0 p.m.

Mrs. Joyce Butler (Wood Green)

I welcome the opportunity of this debate to express my admiration of the medical skill and dedication involved in transplant surgery, and in kidney transplants, in particular. There is no doubt that this procedure has brought new life and hope to many kidney sufferers. I believe that we should do everything possible to persuade people to signify that they are willing to donate their kidneys for this purpose when they die. I hope that this debate will highlight that need and that it may persuade still more people to become kidney donors. I should be grateful if my hon. Friend the Under-Secretary would indicate what is being done to encourage this.

I understand that donor cards are available in many hospitals. I am sure that many people, like me, are not certain what the exact procedure is for becoming a donor and do not know how to obtain the cards in the first place. I wonder whether it would not be useful, for example, if the cards were available in doctors' waiting rooms and clinics. There must be many other suitable places where they could be obtained. I understand that the Gloucester Community Health Council has contacted large firms in the district asking them to take supplies of kidney donor cards and that the response has been encouraging.

I feel that the Department could do more to publicise the need for more kidney donors. Perhaps my hon. Friend would comment on that. I ask him also to look into the question of making legally binding declarations concerning donation of kidneys. I understand that they are not binding at present. Many who sign the cards believe that they are. An improved response to the kidney donor transplant scheme would also reducc the pressure on kidney machine facilities. Even so, many kidney patients will continue to require treatment on such machines. Unfortunately, the provision of the machines throughout the country is uneven and nowhere are there enough to meet the need. In this connection, I understand that funds are no longer earmarked for dialysis by the Department and I ask my hon. Friend what prospect there is of returning to the previous. much more satisfactory, position.

While my main concern in this debate is with the procedure for obtaining kidney transplants, I stress that it is equally important to provide funds for adequate dialysis provision for those kidney patients who are unable to obtain, or are unsuitable for, such transplants. I realise that my hon. Friend will probably have more up-to-date figures than 1. Those I have relate to 1975 when the total need for kidney transplants in the country was estimated to be 1,500 a year, of which 540 were performed in 1975. As for hospital dialysis places, the need was for 2,650, and in 1975 620 patients were receiving such treatment. There was a need for 5,200 dialysis machines for home use and in 1975 1,300 dialysis patients were on machines at home. These figures are important because they reveal how many thousands of kidney sufferers could be saved from dying if we could increase the facilities for all kinds of support.

The removal of kidneys for transplant purposes is governed by the Human Tissue Act 1961. The guidance on that was issued in a health service circular to National Health Service authorities in June 1975. I have only recently been studying this circular, and I believe that many people would have been as surprised as I was to read that the person lawfully in possession of the body of a person dying in hospital, at least until the executors or relatives ask for the body to be handed over, is the area health authority or the board of governors. At the very least this seems an unsatisfactory situation. I hope that my hon. Friend can clarify the reason for it.

In paragraph 11, the procedure out-lined— to make such reasonable enquiries as may be practicable of the relatives before removal of parts of the body …"— is also somewhat loosely worded and unsatisfactory, as is also the wide-ranging scope of the word relatives ". It would seem only fair to medical staff and relatives of people who die in hospital to have a more clearly defined procedure for obtaining consent spelt out in the circular. But, at present, the specific consent of relatives is not necessarily for removal of parts of a deceased person's body, merely a lack of objection. This is clearly also unsatisfactory. Consent should be required.

Moreover, while the approach to relatives to allow the removal of an organ or tissue for transplant to another person must always be a delicate matter there are certain circumstances in any of which special care should be taken in the way it is done. The first of these is where the suggested donor is a child, since the death of a child is always untimely and particularly grievous. The second is where the proposed donor is on a life-support machine. Here, the problem is the decision to switch off the machine, which is invariably an agonising one for relatives. The third is where the suggested donor is a person whose complete recovery had been confidently expected by medical staff and relatives alike and then something has gone wrong.

All these circumstances together were present in a case about which I have been particularly concerned in my constituency and which is the particular reason for my concern in this matter. Perhaps I can just outline the case. A little boy, Len Coombs, aged 8, died in hospital last June of irreversible cerebral anoxia following a tonsillectomy and adenoidectomy. He was a normal, healthy child apart from his tonsil trouble, and his mother, who took him to hospital for the operation, had no reason to believe that everything would not be perfectly straightforward.

When she subsequently telephoned to ask how he was, she was told to come at once, and she had to make her own travel arrangements by bus—an awkward journey—and was very distressed because she did not know what had happened. She was informed that brain stem damage had occurred and that the ventilator was to be turned off. Next day, naturally confused about the procedure, she was asked a number of times if she would agree to her son's kidneys being removed for transplant to another child in need. Two doctors were involved in this questioning, and she was very distressed because her son was still on the ventilator and, as far as she was concerned, still alive and might yet be saved.

Her mother-in-law, who was with her, emphatically refused consent. The mother herself felt that she had been unreasonably badgered for her child's kidneys while he was still alive and she was still hopeful of his recovery.

I am doubtful whether such a case should in any event be a subject for transplant at all, but if it is, there should be a more kindly and understanding handling of the situation. Not more than one doctor should be involved, and the relatives should be given help in understanding what has happened before, and quite independently of, any request for removal of organ or tissue.

I am conscious of the need for speedy removal of tissue if it is to be effective, but that should not override common humanity, and, in addition, the playing on a parent's feeling's by speaking of another child waiting for the removed kidneys to give him new life seems to be quite intolerable.

When I was informed that a new circular had been issued in August, I mistakenly supposed that fresh guidance on the matter would be included and that this debate would not therefore be necessary. Unfortunately, this was not so, and I am therefore asking my hon. Friend to look very carefully at the need to give some guidance in the humane handling of these procedures which could help doctors and reassure the public.

There are many who object to the whole idea of transplant surgery and the procedure could fall into disrepute unless there is more public information and understanding of the legal position and more delicacy of approach by the medical profession than was apparent in this case. The whole procedure is fraught with difficulty, and I appreciate that it demands a great deal of doctors. It may well be that the case that I have quoted was quite exceptional ; I certainly hope that it was. Unfortunately, I believe that some reassurance to the public is necessary when a case of this kind has occurred and has received a good deal of publicity in the Press, as this one did.

I am not so arrogant as to suppose that the few points that I have made would warrant a fresh circular being issued, but I am sure that in the couple of years since the first circular was issued many other points have arisen which require fresh guidance. I ask my hon. Friend to look at the whole subject to see whether it is time to issue a fresh circular with new guidance, particularly bearing in mind the importance of the public co-operating and the need to give them the fullest possible information and help.

10.11 p.m.

Mr. Tam Dalyell (West Lothian)

My hon. Friend the Member for Wood Green (Mrs. Butler) has done the House a service by raising this subject.

I wish to ask just one question. As the Member who has on five occasions t aised under the Ten-Minute Rule Bill procedure the subject of a contracting-out scheme and who, when my right hon. Friend the present Foreign Secretary was Minister of Health, took a delegation with Professor Roy Calne and a number of the most distinguished transplant surgeons in the country, may I ask the Department whether, since that time, there is any feeling that perhaps the occasion is a little riper than it was for a Bill dealing with contracting out?

Since the delegation that will be mentioned in my hon. Friend's notes and the various attempts at Ten-Minute Rule Bills, has anything happened in the Department to make my hon. Friend better disposed towards a Bill on contracting out, perhaps this Session? I should be guided by him whether I would attempt to bring in such a Bill for the sixth time.

10.2 p.m.

The Under-Secretary of State for Health and Social Security (Mr. Eric Deakins)

In raising the subject of obtaining kidneys for transplant this evening my hon. Friend the Member for Wood Green (Mrs. Butler) has raised a matter of consider. able importance and I am grateful for the opportunity which it gives me to say something on the subject.

The transplanting of kidneys, as my hon. Friend has emphasised, is now a well-established surgical procedure. When someone develops chronic renal failure, there are only two possible forms of treatment. One :s by dialysis and the other is by kidney transplant. In the absence of one or other of these forms of treatment the patient will die.

The two are complementary rather than competing forms of treatment in that a patient usually goes on some form of dialysis while awaiting a transplant. Indeed, some patients are unsuitable for long-term dialysis. This year we hope that about 700 transplant operations will be carried out in the United Kingdom, but there are over 1,200 patients on the waiting list and we would clearly like to double the number of transplant operations, thereby saving many lives and improving the quality of life for many others, since a successful transplant enables a patient to lead a much fuller life than does long-term renal dialysis.

The obstacle to such an expansion of the transplant programme is not a shortage of hospital facilities but a shortage of kidneys, and the Government are anxious to do what they can to increase the number of kidneys available for transplant. In a minority of cases the kidney comes from a live donor, normally a close relative with compatible tissue type, but in most cases the kidneys used are taken from patients who die in hospital.

The legislation which governs the use of parts of a deceased person's body for therapeutic purposes, including transplant, is the Human Tissue Act 1961. Save in a case where the deceased person has expressed a wish to this effect the organ may be removed only after there has been such reasonable inquiry as may be practicable into the views of the deceased and of any surviving relatives ". Guidance on the effect of the Human Tissue Act was given in a Health Services circular issued in June 1975. Health authorities were reminded earlier this year of the need to follow this guidance, and I see no reason to amend it.

The Human Tissue Act has a wider application than regulating the donation of kidneys. It covers the use of parts of human bodies for therapeutic purposes, medical education or research and also matters relating to post-mortem examinations, and the circular describes the effect of the Act for health authorities.

Advice is given to hospitals on how to deal with offers from people who wish their bodies or parts of their bodies to be used after death and draws attention to the difference in law between offering parts of the body under the Human Tissue Act and offering the whole body for teaching purposes under the Anatomy Acts.

It advises that if in-patients inform hospital staff that they have made such requests or if they make them in hospital, the information should be recorded in the patient's notes. Many hospitals have display posters and kidney donor cards freely available, but patients should not be pressed to complete cards whilst actually in hospital. Where the deceased person has not requested that his body or part or parts of it be used, the Act empowers the person lawfully in possession of the body to authorise the removal of any parts, for the purposes specified in the Act, subject to its provisions.

The circular also advises that where a person dies in hospital the person lawfully in charge of the body until it is claimed by executors or relatives is the area health authority or board of governors responsible for the hospital. Area health authorities are advised to designate persons to act on their behalf in authorising the removal of organs or tissue, having first satisfied themselves that the requirements of the law have been complied with.

Where the patient has left a clear indication of his wishes the position is straight forward, but where he has not done so a person lawfully in possession of the body may still authorise removal of parts of it if, having made such reason able inquiry as may be practicable, he has no reason to believe that the donor would have objected or that the surviving spouse or any surviving relative objects to the body or the specified part being so dealt with.

Specific consent is not necessary, as my hon. Friend the Member for Wood Green pointed out—merely a lack of objection. What inquiry is reasonable and practicable must depend on the facts of each particular case. However, in most instances it will be sufficient to discuss the matter with any one relative who had been in close contact with the deceased, asking his or her his own views, the views of the deceased and also whether he has any reason to believe that any other relative would be likely to object. In certain circumstances it might be necessary for such discussion to take place on the telephone.

Potential organ donors will often have spent some hours or even days in hospital, and in such cases hospitals will have sufficient opportunity to take steps to contact relatives. Where, after such reasonable inquiry as may be practicable, there is no evidence that the donor has any relatives, authority may be given under Section 1(2) in the absence of any other evidence which suggests to the contrary.

Where it is known that a potential donor has relatives but it has not been possible to contact any of them, a person giving authority for organ removal must be especially careful to ensure that the requirements of the Act with regard to the making of inquiries have been met. In a case where organs must be removed very soon after death, it is not enough to say that no inquiry is practicable. Any objections made by patients or relatives should be noted immediately in the patient's notes. The word "relatives" is not defined in the Act, but there are some circumstances in which it ought to he interpreted in the widest sense, for example to include those who, although claiming only a distant relationship, are nevertheless closely concerned with the deceased.

The circular does not, however, attempt to tell those involved how they should approach relatives, because this is essentially a matter of professional skill and judgment rather than of administrative regulation.

If kidneys are to be used for transplant they must be removed very shortly after the heart has stopped beating, preferably within half an hour. Inevitably this means that the approach to relatives must be made either before death or immediately after death and thus comes unavoidably at a time when grief and anguish are at their height. We have heard that relatives often subsequently feel glad that the kidneys have been used to save other lives and in this find some measure of consolation for the loss of a loved one.

Clearly it is of vital importance that the approach is made by an experienced person and is made as tactfully and sympathetically as possible. The medical and nursing professions are well aware of this and I do not think it would do the slightest good for my Department to issue guidance on the subject. Indeed, I think that any such move would simply produce resentment. If it produced any other result at all it would be to make the staff less willing to seek out potential kidney donors among their patients. This would be disastrous.

Mr. Dalyell

Is that not precisely the point? The decision has to be taken at a moment of maximum grief and does that not make some case for a contracting-out Bill under which decisions would be made in relatively cold blood beforehand?

Mr. Deakins

I shall come to that point in a moment because it is important and I know how strongly my hon. Friend feels about it. Although one may feel that in certain circumstances one can criticise the actions of staff, on balance we do not feel that any instruction sent centrally from the DHSS would serve a useful purpose.

Without wishing to comment on any individual case, I should be the first to admit that, as in all matters which depend on human judgment, there must sometimes be an error of judgment in the way in which relatives are approached, but that is a reflection simply of human fallibility not of callousness or of lack of official guidance. Naturally I and other Ministers feel grieved for any relative whose sufferings are needlessly added to by an inept approach on the subject of kidney donation, as I am sure would all those concerned, but I should grieve much more for the suffering of relatives of those patients who died needlessly because of a more restrictive attitude to the donation of kidneys.

The Human Tissue Act gives priority to the wishes of the deceased, and where these are made known in advance the burden on relatives is much reduced. It was for this reason, as well as to encourage the growth of positive attitudes towards kidney donation, that the kidney donor cards were introduced. My Department is constantly seeking new outlets for these cards and recently, in cooperation with Department of Transport, we arranged for them to be sent out with first provisional driving licences. By carrying such a card we can all make it clear that we wish our kidneys to be used for transplant should the occasion arise and by discussing it with the family prepare them for the possibility and thus relieve them of strain. 1 urge everyone to consider seriously whether they should carry such a card.

During the five years since the kidney donor card scheme was introduced, some i 1 million cards have been supplied. In order to make them more readily available, stocks of cards are now available at all offices of the Department of Health and Social Security and we shall shortly be sending out cards to all chemists shops. I take careful note of the suggestion that has been made about general practitioners' waiting-rooms and of the call for more publicity.

It has sometimes been suggested that the law relating to the removal of organs for transplant should be changed. There are those, on one hand, who would like to see it require i he positive agreement of the next of kin in every case, while on the other hand there are those who would like to see a so-called opting-out system whereby organs required for transplant could be removed on the death of a patient unless he had before death expressed a positive wish for this not to happen.

I am not satisfied that a change in the law would necessarily be helpful. Certainly I would not agree with a change that was intended to enable the reluctance of the next of kin to overrule the expressed wish of the deceased in favour of his kidneys being used. This could work only to reduce the number of kidneys available, and I see no offsetting gain. I think that my hon. Friend the Member for Wood Green would agree and support my view, because she has asked that the signature on the card should be made legally binding.

My hon. Friend the Member for West Lothian made a point about the opting-out system. The opting-out system, which I understand has recently become law in France, has its attractions, but there are also pitfalls since, unless great care was exercised in ascertaining whether the deceased had objected, mistakes would be made. I do not think that it would resolve the problem of approaching relatives, since although it would be legal to remove organs without approaching them, I cannot believe that many doctors would be prepared to do this without a word first to the relatives.

Mr. Dalyell

Every time such a Bill has been put forward, we have emphasised that two doctors should have to certify clinical death. I do not doubt the hard work done by the Department in issuing the cards, but they have not produced very many kidneys and there is a chronic shortage of them.

Mr. Deakins

As most of the 11 million cards have gone to people who are hale and hearty, and bearing in mind the average age of the population, it will obviously be a considerable time before many of the kidneys become available for transplant. The fact that we are running hard just to stay in the same place should not make us doubt that, as a result of the wide extension of the kidney donor card scheme, there will be many more donors in future. I do not say there will be many more next year, but I shall be surprised if there is not a substantial increase within a decade.

I do not believe that the law is the main obstacle to improving the number of transplants. However the law is altered, we shall still depend on doctors and nurses identifying potential donors among the patients under their care and on their skill in the right and sympathetic approach to relatives.

Mr. Dalyell

Is not the basic trouble with the donor card scheme the fact that none of us believes that accidents will happen to us? We believe that accidents happen only to other people and we do not take care to carry our donor cards with us—perhaps because we have changed suits or moved papers from one coat to another. I have just looked in my wallet and discovered that I do not have my card with me.

Anyone of us could be involved in an accident tonight. The problems with the cards apply especially to young people for whose kidneys there is the greatest need. A card scheme, however efficiently operated, cannot produce the necessary number of kidneys.

I first became interested in this matter 14 years ago because of a constituency case. It is awful to think of the number of good organs that are incinerated when they would be given by relatives or by the dead people themselves if they thought they could help others posthumously. All this time, we see the poor souls on dialysis or experiencing great suffering while working lives that could be of great value to the community wither away.

As there is a continuing massive shortage of kidneys, and in the light of the facts presented by Elizabeth Ward and others, may I ask the Department to consider bringing forward an opting-out Bill? Many hon. Members would like to bring forward such a Bill, but there is not much point if the Department is set against it.

I know that the Minister is a man of good will. Will he discuss the matter with the doctors in his Department and consult those who take a different view and let us know his decision before 8th December, which is the closing date for the submission of Ten-Minute Bills?

Mr. Deakins

I know how strongly my hon. Friend feels on this matter and I think that I can respond sympathetically to his request. I should not want him to waste the opportunity of a Ten-Minute Bill if the Department will be unsympathetic. He may have another purpose in mind for a Bill.

We have an open mind on the idea of such a Bill, but we should need a much better idea of the experience in France, and we must have regard for the considerations that I have already put forward. Basically, we have to depend very much on the widespread use of donor cards even if people do not always carry them. The more people who carry them, the more chances there are of increasing the number of donors and the number of people who can be helped.

The Question having been proposed at Ten 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 half-past Ten o'clock.