HC Deb 26 April 1971 vol 816 cc194-206

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

11.40 p.m.

Mr. Greville Janner (Leicester, North-West)

I am pleased to have the opportunity to draw the attention of the House to the need for an inquiry into the care of terminal patients. The only absolute certainty for us all is that we shall each one day become a terminal patient. We all hope that it will be later rather than sooner, and carefully thrust our heads into the nearest pile of sand and try to think as little as possible about it. The result has been an extravagant and deplorable lack of information concerning the care of dying people.

I have asked a series of questions of Ministers and I have received a series of answers saying that no information is available. For example, it is not known how many people live alone at the time of their death. It is not known how many terminal patients are refused admission to hospital or are discharged when dying. It is not known how much it costs to keep a terminal patient. It is not known how many coroners' inquests are held on people living alone at the time of death. It is not known how long the delays are between people dying and being found because neighbours happen to notice that the milk has not been taken in. It is not known how many terminal patients die alone when suffering from incontinence or double incontinence. It is not known what the needs are, and, therefore, we do not provide for those needs.

Why should there not be any information? It is partially because this is not a subject that makes any of us very happy to talk about partially because those who die have no union to fight for them—or, if they have, it is not in this world. It is partially because they have no votes; when the next election comes, the only certainty is that those who die in the meantime will not be around to cast their votes. It is partially because relatives—and I have letters from dozens of relatives all over the country—do not want, before the death of the patient, to be made more miserable by his plight being brought to public attention, and after the relative is dead all they want is to try to forget a little and live their own lives in peace. It is not a problem for the wealthy, because if people are wealthy they can buy comfort and nursing, and pass their last days in decency and dignity. Even many middle-income people are unwilling to raise the roof over this problem.

Why have an inquiry? It is because without it we cannot assess the need. We would not plan a bus route without knowing how many people lived along it or would use the buses, yet we plan a service for half a million people who die each year without anyone having the slightest idea of the circumstances of their deaths, except that we know that just over half of them manage to die in a hospital.

I must make it quite plain that I am not pressing for hospital accommodation to be available for all dying persons. It is important that as many people as possible should be enabled to die in the comfort and familiar surroundings of their own homes, provided that they can be coped with by their relatives or can look after themselves and can die in dignity.

Why, then, should the Government carry out this investigation? The answer is that the hospital boards are not equipped to do so, nor are the local authorities. They do not have the finances, and there are also certain demarcation difficulties. But the Government have overall control and could take such steps as are appropriate to deal with the situation.

A little information came to me a short time ago by courtesy of the medical officer of health for Leicester, and I am happy to pay tribute to him and to his staff. The information is that in one month in Leicester of 79 who died known to the home nursing service no fewer than 46 were incontinent and 21 doubly incontinent. Eleven received the night nursing service, 11 were with their relatives, and 12 of these unfortunate people were living alone. One can hardly imagine a worse ending to life than to die incontinent, alone, with no one to look after one other than those most devoted ladies of the nursing service, who are overworked and unable to pay the number of visits that they would like or to spend the time that they would wish with their patients.

I was able to raise this matter in the Press, on television and on radio, and I have had hundreds of letters from all over the country, most saying, in effect: "Please don't quote us. It is just that we should like you to know that we are grateful that at last this matter is being raised. Something must be done about it."

This is the tip of one of the most unhappy icebergs that one could imagine. Not surprisingly, these individuals want no publicity. Their complaints arise under two main headings. The first is a lack of physical facilities. Some old people cannot afford to warm their homes. They want small houses, and no one builds little homes for old people. Many live in large houses. Some have homes without inside lavatories. In many cases there is lack of sufficient medical or nursing care. Some hospitals do not admit them when they are dying. Others discharge them home to die. Some hospitals have insufficient space or nurses to cope. I blame not the hospitals but the system which allows this to happen in an otherwise civilised country.

What is being done? The hospitals do their best, but it is not enough. The problem of old people is generally at the bottom of the pile if there are not enough beds. One must have enough for the people whom one can help to live and whom one can cure; it is the old who must go home to die. Once one is over 60, and especially over 65, unless one is an "interesting case" one may have the very greatest difficulty in finding a hospital which is prepared to care for one and let one die in decent comfort.

The domiciliary services do a marvellous job. I went round with the nursing service in Leicester and saw the unhappy cases that they cared for and heard of those whom they have managed to make happy in difficult and sometimes squalid circumstances. All praise to the professional workers. I am not attacking them for a moment. They do valient work with the minimum of resources in most cases. Many home helps are angels. They make it possible for people to live in their own homes. Many also work at weekends and do a tremendous job for which they are poorly paid. Many work amongst the incontinent and the dying in circumstances of great inconvenience. We should be very grateful to them.

The five-days-per-week meals-on-wheels service is run 50 per cent. by volunteers. At least some old people receive a meal and a visit. But some of them do not receive that for five days per week but perhaps only on two or three days. Some old people who are dying alone, ill people who cannot prepare a meal, cannot eat the food brought to them because, perhaps, they have carcinoma of the throat and cannot swallow propertly. These people need suitable food, but there is no one to cook for them. No one knows how many there are. I congratulate and praise those who run the meals-on-wheels service. I thank God for them. But they cannot cover the ground.

There is a criticism of relatives who send the old and dying off to hospital, but there is not the praise that there should be for the hundreds of thousands who are making the utmost sacrifices to keep their loved ones at home and look after them in the most distressing possible circumstances. I have seen some of these people in homes in Leicester. They are wonderfully courageous, nursing their husbands, wives or children, patients who in many cases should certainly be in hospital because the relative cannot cope with the circumstances; but hospital beds are not available. Whether it is a question of the relative's incontinence, of the difficulty of feeding him, or of the delirium which should not be seen by children, it makes life unfair and difficult for far too many people.

Hospitals will no doubt be built. I am sure that the Minister will say that more resources are to be allocated, but that is a long-term matter. Domiciliary care is available now if we could only get the nurses, train them and keep them and if only there were not a wastage of about 40 per cent. of entrants to the nursing service because, apart from poor pay, the service is in many other respects unattractive. If there were the nurses and if there were available the means of caring for dying people in their own homes, we could do much better than we do and without the need for such enormous resources as is sometimes thought.

I have asked the Government if they will promote such an inquiry. In one Written Answer the Minister told me about certain inquiries that are proceeding and about one report in particular which is awaited. With over half a million people dying every year, and in view of the fantastic and disgraceful absence of information, these inquiries, however admirable they may be, are not enough. What is needed is a full-scale and thorough inquiry conducted by the Government. I am not blaming the situation of the dying on those who are presently working in this field. I do not blame the Government. I blame all Administrations and all of us who have connived at sweeping this matter under the carpet for so long.

The matter of the dying occasionally comes to the surface in a dramatic form. Recently the Press quoted the cases of two old people dying alone in the London Borough of Barnet. The coroner said this of one of them: Maybe it is an indictment of all the social services in this country that a woman of 81, living alone, should be allowed to continue to live and to die in such conditions. It is extraordinary that, with the health authority's statutory power to help people—even against their own will—the powers were not used in this case. A social worker wrote to me saying this: Last week I was asked by a local resident to see if I could help with an old man who was ill. Within five minutes of the request I was at the man's home—a small cottage without hot water, bath or indoor toilet and only a small unguarded electric fire for heating. The man had not been upstairs for years because it was too cold. When I called at the house the old man was on the outside toilet in the yard on a bitterly cold day. After some ten minutes of waiting I decided I had better investigate and I found that the man was too ill to get himself off the toilet seat. After helping him back into the house and trying to make him comfortable I telephoned to a doctor who had seen the man that morning. She said that she had thought that maybe she should have tried to get him into hospital that day, but she would try to do so now. During the next ten minutes the man died. I can quote this case because it was reported in the Press.

The most famous and most unhappy case of all was that of Lillian Board who went abroad for her treatment because she found none at home which was sufficiently satisfying, and eventually a team of doctors went out to the clinic in Germany. I quote what the doctors said on their return: The fact that so many patients go to the Ringberg Clinic to find something they fail to find at home is really more a reflection on the medical service they leave than a credit to Dr. Issels' particular treatment. I quote from a Press article: Athlete Lillian Board's father put it even more bluntly: 'Dr. Issels takes on the cases that other people have regarded as hopeless and gives them a new chance. In this country they are sent home to die.' This is a terrible indictment of our civilisation.

I finally quote from a compassionate article by Dr. Hertzel Creditor which appeared in the journal called Pulse last week, considering the subject of the dying patient. He ended in this way: It is not enough that the dialogue on death should be emotive, or hesitantly clinical or psychiatric. If, at last, its importance has achieved the notice of the doctor, then concerted observation and investigation is desirable. Is it too much to ask that the Medical Research Council institute an inquiry—there is no shortage of material!—in which observations on death are controlled and precise, and the deductions statistically significant. I ask whether it is too much that the Government, with all their resources, should conduct a full-scale inquiry into the clinical side of this terrible problem, into the agonising, inhumane, social side of the old, lonely and ill person, living his last days alone, often in squalor, in no way his own fault. I ask that this inquiry be held so that steps can then be taken in the light of full information to remedy this unhappy and agonising situation.

11.56 p.m.

The Under-Secretary of State for Health and Social Security (Mr. Michael Alison)

The subject of terminal care which the hon. and learned Member for Leicester, North-West (Mr. Greville Janner) has raised this evening is so far-reaching and so intertwined with every aspect of the provision of the National Health Service and the personal and social services that in a brief debate such as this I can hardly do justice to the range of factors which are bound up with the subject.

Nevertheless, the hon. and learned Gentleman has done us all a service by drawing attention to the subject and I am glad to have the opportunity of answering some of the points he has raised both in his speech tonight and by a long series of Parliamentary Questions, to which he referred, which he has tabled over the last few weeks.

I am, especially, particularly grateful to the hon. and learned Member for his courtesy in giving me some advance information about the particular matters he intended to raise and some of the questions he would put. I will try in this reply to concentrate on these matters in particular.

There is a general point I should like to make first of all about terminal care and the way in which it is provided in our social services. A definition might be helpful. One might say that terminal care refers to the management of patients in whom the advent of death is felt to be certain and not too far off, and for whom medical effort has turned away from therapy and has become concentrated on the relief of symptoms and the support of both patient and family. These services are rendered to patients not by specialist staff or, in the main, in specialist units, but, at one time or another, by all those who provide health services—by the general practitioners, by the various agents of the local health authority—and the hon. and learned Gentleman specified some in his constituency—by hospital specialists in many specialties and by nurses and other staff who work with them.

Although the point may seem an obvious one, it is as well to remember that this is the context in which we are discussing the subject tonight. Some of the questions which the hon. and learned Member has raised, particularly those about the collection of statistics, must be answered in the knowledge of the situation as it is; that is to say, in the knowledge that patients about whom we are speaking are patients who are treated by the same people and normally in the same places as the whole range of other patients. Indeed, for many of them the borderline between active therapy and terminal care neither can be nor, indeed, in the interests of all concerned, should be, at all clearly defined.

The hon. and learned Member has mentioned Dr. Issels, and, whatever may be said about the treatment which he provides in his clinic, one thing is clear and that is his refusal to admit defeat. In the eyes of his patients and their relatives, this is perhaps his greatest strength. The hon. and learned Member quoted something about the doctor. Translated into the language of the subject which we are discussing this evening, he perhaps hardly believes at all in the application of terminal care, and there are surely patients for whom it would be very wrong to take any other view even if the spark of hope on which the physician or surgeon is basing his efforts is a very tiny one. This has a bearing on the way in which information can be collected, and I shall return to the point in a moment.

There are many things which the hon. and learned Member has mentioned this evening with which I agree entirely, or at least in a large measure. I do not think that there is anything between us in the importance we attach to the question of terminal care in general. It is an essential part of a civilised community that we should give those for whom the end of life is approaching all the support of which society is capable, so that they can end their days in good and skilled hands and can be sure that, as far as medical care can achieve it, they are kept in what comfort and in what freedom from pain we can manage to provide for them.

The hon. and learned Member has mentioned some specific inquiries which he has made, and has drawn attention to things which he considers to be shortcomings and to a number of individual and particular cases. I hope that he will accept that, here again, there is nothing between us and that my right hon. Friend and I and our Department are as keen as he is, and, indeed, have always done our best, to follow up information about cases where services have apparently fallen short or the standard at which we should be aiming has not been reached, and have taken what steps we can to correct matters where correction is needed. If the hon. and learned Member, who has referred to some of the large sheaf of letters which he has had, wishes me to follow up any case, I assure him that I will be happy to do so if he would like to specify it to me.

I find myself in agreement with the hon. and learned Member also on the question of research, but there is some qualification to the agreement that I register here with him. Research is surely needed, but I think that the content of some of his Parliamentary Questions over the last few weeks suggests a misunderstanding of the kind of statistical information which it is possible and useful to collect. I have already touched on the point briefly a few moments ago.

I do not think that it would be right, quite apart from the question whether it is possible, to attempt to collect statistics of "terminal patients" as such, whether in hospital or in connection with their admission or discharge. I find myself very much in opposition to the whole idea of labelling patients in this sort of way for record-keeping or statistical purposes, and I would not wish to lead the hon. and learned Member to believe that this is something on which we should be prepared to meet him. But this does not mean that I dispute the need for more information on the matter of terminal care.

As my right hon. Friend told the hon. and learned Member in a Parliamentary Answer on 6th April, my Department is supporting specific, although local, research schemes, and I think that, for the present, this is the right way to proceed. We need the experience of individual inquiries, carried out within a manageable compass, first, to give us information about a situation about which we do not know enough and, secondly, to teach us where and how we might in future carry out wider and more extensive inquiries. I think that this is a much better way of proceeding than to try to launch the national inquiry to which the hon. and learned Member has referred. Indeed, as I hope to show, some of the information which would be most useful can be obtained only in the course of limited local inquiries, because to make the same investigation on a national scale would set a task so big as to be prohibitive.

The hon. and learned Member has asked me specifically what is the investigation to which I referred in my Parliamentary Answer the other day. The facts are that the Department has sponsored a scheme for research under the direction of Dr. Ann Cartwright, of the Institute for Social Studies in Medical Care. It is concerned with the care of the dying, both at home and in hospital. Information has been sought by a series of structured interviews with persons closely connected with a deceased person, supplemented by general information from doctors, local authority domiciliary workers and administrators. It is a massive piece of research work.

Results are being obtained from inquiries about nearly 800 deaths in 12 areas of England and Wales and represent a great deal of highly complex information. It is now being analysed, and a report is expected to be published next year. The sort of questions which the project seeks to answer are how, and by whom, and at what social, financial, and emotional cost, are the relevant needs of terminal patients being met; what is the extent of unmet need; why is it unmet; is it through failure to ask for help, through shortage of services, or through inadequate organisation. The hon. and learned Member will surely agree that such a study as this will provide much of the basic information we need, although, as I have said, necessarily on a local rather than a national scale.

I should also mention the research carried out at St. Christopher's Hospice in London, where a number of studies are in train, again supported by my Department. One study here is largely clinical and is concerned with the problem of controlling pain in terminal cases while at the same time preserving the personality and dignity of the patients. Another study is in the development of domiciliary services from the hospice to help general practitioners. This could be said to be a study of the ways in which close cooperation between hospital and home can be achieved. A further study is concerned with the attitude of bereaved families and with ways of helping them. I understand that other studies are under way or proposed at other centres but I hope that I have said enough to show to the House the sort of inquiries which are already in progress and which will give us the sort of information upon which future plans might well be based.

Let me now turn to the question to which the hon. and learned Member devoted a good deal of his speech; namely, the question of the way in which we could so develop and build up our services as to improve the quality of the terminal care which is given to patients

Although a number of the Parliamentary Questions which the hon. and learned Member has put down over the weeks suggested that he might advocate the far more general admission of terminal patients to hospital, I am glad to know from what he said tonight that this is not the line he has pursued. From the information available to me I feel sure that it would have been entirely wrong to follow it. Dr. Cicely Saunders, who is an authority on this matter, has said that when the illness has a foreseeable end, most families wish to look after their relatives at home if it is at all possible. In so far as the hon. and learned Member has concentrated his remarks on the need to improve local authority services so as to work towards this end, I am in entire sympathy with his aims. He will know, of course, that we have done a great deal to foster the development of these services.

Unfortunately, competing pressures of other urgent needs on the limited resources in manpower and money available to local authorities prevent them from providing as full a service as they would wish for the care of patients in this category. A number of local authorities already provide a night nursing service in order to give comprehensive care to those acutely ill in their own homes and for those requiring terminal care. A night sitter-up service is also available in some areas to provide respite for the families themselves, who can thus be assured of some relief during the night hours.

Provision by local health authorities of the services needed for persons in the community including those requiring terminal care has grown steadily in recent years. For example, the number of persons aged 65 and over visited by health visitors in England and Wales has in-increased from 276,000 in 1964 to 376,000 in 1969, an increase of 37 per cent. in five years. Similarly, the numbers over 65 visited in their homes by district nurses has risen by just over 30 per cent. in the same period—438,000 in 1964 to 562,000 in 1969. The number of cases in which home help was given for persons aged 65 and over increased from 283,000 in 1964 to 376,000 in 1969; that is, an increase of 33 per cent. in five years.

I would say in passing how much I appreciated the reference the hon. and learned Gentleman made to the extremely valuable and rewarding help which is given by home helps. Of particular interest here is the fact that well over 80 per cent. of all home help now provided is concentrated on the elderly. These, of course, in the nature of the case, include a large number of terminal patients.

During this period, the numbers of health visitors, home nurses and home helps employed by local health authorities increased by about 12 per cent.; and the expansion of these domiciliary services has been matched by an increase in the valuable contribution by voluntary and ancillary help. Perhaps I may be allowed to emphasise the remarks the hon. and learned Gentleman made about the enormous contribution by voluntary bodies. His appreciation of them I warmly share with him. I am, of course, very conscious of the need for further development of the community services, and the hon. and learned Member may be interested to know that the Secretary of State wrote personally to the civic heads of all local health and social service authorities on 1st April seeking their help in the maintenance and strengthening of the local health services.

As I have already indicated, these services have been impressively developed in recent years and a concentrated effort by all concerned, including central and local government, is needed to ensure that standards of provision in the community services are maintained.

For their part the Government have increased the financial allocations made within the overall public expenditure budget for England and Wales for 1971/72 and 1972/73 specifically for the maintenance and development of community health and social services.

The Question having been proposed after Ten o'clock on Monday evening, and the debate having continued for half an hour, Mr. SPEAKER adjourned the House without Question put, pursuant to the Standing Order.

Adjourned at ten minutes past Twelve o'clock.