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There is urgent need for the law to intervene in this matter. My Bill to save patients, as I have said, was blocked. The pious hope that the previous Bill would save them has not come true. I am afraid the situation has worsened. Recently, a hospital doctor, speaking in court under oath, said that two or three patients a week were dying in his hospital alone because they were not being given food or fluids. He said, “I see it happening all the time”.
After the most recent BBC programme on this subject, which was broadcast just before last Christmas, the presenter received a huge number of follow-up calls telling of individual experiences of friends, acquaintances or relatives who had been denied food or fluids. One complaint came up time after time, and I would not be surprised if Members of the Committee had not heard it in their own spheres: a cup of tea, a glass of water or even a plate of food would deliberately be placed where a bed-bound patient could not possibly reach it and after an hour or so a nurse would come bustling in and say, “Oh, not hungry today, Mr Jones?”, and without receiving an answer would just remove it. That complaint was made dozens of times. There were nearly 140 complaints recounting experiences such as I describe. Those things worry me greatly.
Of course I understand how busy nurses are. I appreciate that feeding patients takes time and patience, but we really cannot go on like this. The person in charge must make sure that the staff feed the patient, appeal to relatives to give their help, seek volunteers—I think that many would be ready to help in this way—or allocate money for more paid help in feeding patients.
In what I believe is still, by and large, regarded as a Christian country, or at any rate a humane one, we must not stand silently by while sick people are killed by deliberate starvation. I know about elderly bed
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These amendments are framed with care. The matter is not always straightforward, and I tried to indicate that sometimes a patient may not want food for various reasons, or they may actually be harmed by it. These changes would reinstate feeding patients as the recognised norm. It would send the message that patients must be cared for properly. It will no longer be possible for medical staff, without the slightest opportunity for a friend or relative to comment or even to be told, to withhold food and drink from a patient. The seriousness of such an act will be underlined by the involvement of a responsible medical officer, as set down in the amendment, having to certify in writing why it is being done. The patient will have to be consulted. It will not be possible simply to put the notice “nil by mouth” on the patient’s record, masquerading under the guise that he or she is being given medical treatment.
I have had several instances reported to me of patients begging relatives to give them a drink or even just something to moisten their mouth but because those relatives humbly believe that the hospital must know best—and many do—they think there must be some important medical reason for the decision. They think that they are not important enough to argue against what is being done to their dear ones. I recall one woman who told me that when she finally gave in and gave her mother a damp sponge to suck, she was appalled to see that the gums and flesh inside her mother’s mouth were stuck together because her mouth was utterly dried up. A post-mortem on one old man showed that his tongue had rolled right back down his throat while he desperately searched for water.
If we fail to act, if we turn our backs and silently acquiesce with the practice of starving people to death in our hospitals, even if it only happens occasionally, real fear will spread in the minds of anyone over 65 if they learn they must go into hospital, especially if they have no friends or relatives to visit them. They are already scared; they fear MRSA or Clostridium difficile (CD), the new menace in hospitals, but this new fear will be even more terrible. Medical treatment is one thing; providing an essential for life is quite another.
The Minister may seek to deny that this amendment is appropriate here; if so, will he say where these amendments would be appropriate and whether he is happy to allow the present situation to remain? I beg to move.
4.30 pm
Baroness Masham of Ilton: In the rehab unit of a local hospital, which was also a place for very ill or dying patients, which I was visiting, I got to know a man who was very ill. One day I asked him if there
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Why should people be denied the little pleasures of life, especially in the last days of life? Why should they be starved and denied fluid? This did not even happen to Jesus Christ who was crucified on a cross. Denying food and drink to people who want it, as happened recently to a lady in the hospital in Norwich, is simply cruel and uncaring and piles on the concern of elderly patients and their relatives when they have to go into hospital.
I thank the noble Baroness, Lady Knight of Collingtree, for these humane amendments. We live in a very money-minded society. It is cheaper to kill than to keep alive. Surely, people should feel safe in hospital.
Earl Howe: I rise briefly to support my noble friend who spoke extremely powerfully on an issue which it is not difficult to regard as highly emotive. I congratulate her on having championed it in the way that she has. It is hard to escape the view that there is a very real problem in many of our hospitals of the kind she has described, much as some may not want to confront the fact. We should all rightly be most concerned about it. I was appalled by the incidents which she described. Her amendments make it quite clear that food and drink should never in any circumstances be classified as medical treatment. I agree with that. In fact, up to this point, or rather up to the point when my noble friend raised the matter at Second Reading, I had always taken it that food and drink could not possibly be counted as medical treatment. By food and drink, I mean ordinary food and drink such as normal healthy individuals might consume by mouth. I do not want to put my noble friend to undue trouble but it would be helpful, if she has the information to hand, if she could tell the Committee a little more about the ruling by the GMC that has given rise to the need to make the distinction she is drawing.
I seek to be helpful to my noble friend but it is my belief that the Mental Capacity Act is not yet fully in force. Will the Minister confirm that? I very much hope that he will acknowledge the seriousness of the issues which my noble friend has raised in her amendments and that something tangible and positive can be done to address them.
Lady Saltoun of Abernethy: The situation which the noble Baroness, Lady Knight, described seems to me to amount to nothing short of manslaughter. Have any legal actions been brought against any hospitals by the relatives of people to whom this has happened? I very much hope that the Government will take this amendment very seriously, and that if they cannot accept it as it stands, they will bring in one of their own; otherwise, I should be very happy to follow the noble Baroness into the Division Lobby. I hope that all Members of the Committee will take this very seriously. After all, let us remember that a great many
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Lord Patten: I spoke during the proceedings on the Mental Capacity Bill when it was before your Lordships’ House. I have attended each of the Committee days, waiting for the opportunity to give my strong support to my noble friend Lady Knight. I do so as someone who is in no sense an expert although my record on feeling strongly about these issues is as long as your Lordships’ arms combined.
I will not repeat what my noble friend has said, except that she is absolutely right. There must be a profound respect for life, especially at a time when human life is at its most vulnerable—perhaps involving mental and physical health problems at the same time, which we must take into account. It must surely follow that any patient should receive adequate food and drink, subject to the provisos of my noble friend’s amendments. She may, of course, be considering amending her own amendments in due course, in the matter of anorexia and other issues, to make the amendments that she is moving acceptable to the Committee. Perhaps the Minister will help us on that.
I say all that by way of introduction—I have only two points that I wish to make. First, I wish to stress the importance of the very new United Nations Convention on the Rights of Persons with Disabilities. This was accepted by the United Nations General Assembly only on 13 December 2006. Article 25 of the convention specifically concerns health. Paragraph (f) of that adopted convention forbids:
“Discriminatory denial of health care, or health services, or food and fluids, on the basis of disability”.
By its own definition, this of course includes mental disability or cognitive disabilities of any sort. I hope that I am right in presuming that the United Kingdom will be, if it is not already, a state party to this very important convention.
Before we return to this issue later in the Bill, perhaps the Minister would very kindly do three things, either in his wind-up, or in a letter—it might be more convenient for him place a copy of the letter to me in the Library of the House. First, will he confirm that we either are, or intend to become, a state party to this extremely important convention? Secondly, will he give us a timetable—or at least an outline timetable—for the adoption of this convention? Thirdly, will he explain to me and noble Lords how he, his ministry and NHS professionals will abide by this very recent convention, which has not perhaps received the attention it deserved in the media because of the Christmas period between then and now?
My second point is to raise, in the context of this amendment, the growing fears among some, to which my noble friend Lady Knight has already alluded in graphic terms in her admirable and very disturbing speech—I hope and suspect that they are generally unfounded—that there might be a risk of those with mental and physical problems, unwillingly or unwittingly being starved and/or dehydrated to death
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Some professional observers working in the service have, since Christmas, represented to me that to them the principle of saving life in the NHS is sometimes—not often—being subordinated to subjective judgments on the questions of so-called quality of life. That quality of life is all too often measured by what seems to me and to those professionals to be the wrong standards; that is, that of the mentally and physically fit and able, rather than people in their own terms.
I hope that that is generally wrong, but there is a bit of evidence for it. There is even more evidence that people are fearful, and that therefore it does become a reality, which I suspect the Minister and his colleagues will have to deal with. I see a growing paradox in the fact that for many years now, people were very glad to carry organ donor cards in order to give; yet now I am told that there is a growing grassroots movement, in which some people are being given, and wish to carry, what I can only term in shorthand “self-protection cards”. Should they go into hospital, they will attest through that card that they do not wish to be dehydrated and/or not fed. I have not seen these cards, but I am told that there is a growing movement to promote them around the United Kingdom. My noble friend Lady Knight, with her acuity and speed, has handed me one. It is orange, and therefore it is an all-party card. I will read to the Chamber from it. I never used to get this service in another place from my noble friend. I thought that I was her Parliamentary Private Secretary this afternoon, not the other way around. The human rights care card states:
“I direct any person who has care of me at any time to uphold and protect my right to life as guaranteed by Article 2 of the European Convention. Under no circumstances do I want food or fluid (howsoever delivered) to be withdrawn for the purpose—or a purpose—of hastening my death”.
I have no present intention of dying, but I hope my noble friend will get me one of these cards, which is now hastening its way back to her.
Perhaps the Minister has had the time to reflect on whether those cards have any force in law. Are they legally binding statements? If my present intention not to enter hospital turned out no longer to be true, and I had one of these cards and I was in hospital, is it a legally binding document? I wonder whether the Minister might be kind enough, having reflected on this issue, to draft a letter to me that can be placed in the House of Lords Library, giving a clear indication of whether the Government approve or disapprove of such cards. Perhaps the Government intend to introduce in parallel with the organ donor card a card such as the one that my noble friend Lady Knight has just drawn to the attention of the Chamber. I look forward very much to his reply in whichever form it comes, either orally this afternoon or by letter, or letters, later on.
It is the first time that the noble Lord and I have debated in any place since he and I were rookie councillors in the old City of Oxford council
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Lord Patten: New Tory. That was a Freudian slip, encouraged by the noble Lord, Lord Carlile. How things have changed.
Baroness Finlay of Llandaff: I rise briefly to comment on the amendments. The noble Baroness, Lady Knight of Collingtree, has done vulnerable patients in this country a major service. She has highlighted the dangers and disasters that occur when there is bad nursing care and bad basic care. She has highlighted the mixed messages that have come from medicine and have created fear among the public. She has also alluded to her presumption that the Minister will say that the amendments fall outside the scope of the Bill. Indeed, I expect that he probably will come back to her with that answer, but that should not dent her campaign to speak up for the vulnerable.
I will try to clarify briefly some aspects for the Chamber. I declare an interest as I am on the BMA ethics committee. It has been said that feeding is a medical treatment. That is a very sloppy use of language. Artificial feeding is a treatment intervention, and we have to be very clear about that. Every patient has a right to have food and fluid. If they cannot swallow, and that is the problem, one has to look at the least burdensome way to maintain their hydration and nutrition.
My own view is that fluids and food should be uncoupled. There are many instances where people cannot drink or keep their fluid intake up, which can be critical in some days, but it is not so critical if they cannot eat for some days. It takes much longer for nutritional deficit to come in. However, severe dehydration can result in renal failure very quickly. The artificial means are at issue, which is, basically, whether you put a tube directly into the stomach. In thin people that is quite an easy procedure, but in obese people that can be very difficult. If not possible for some reason, you might end up with intravenous nutrition. That is very complicated and, therefore, a treatment procedure. It is more complicated than much chemotherapy, which is used in cancer care, and must be classified as a treatment. Intravenous nutrition is very expensive and has many potential adverse effects, including the risk of septicaemia. You can make patients desperately ill, or kill them, if you get the mixture you are giving them wrong, either in its composition or the rate at which you give it. We can go right from the simplest, but the most important, feeding and drinking, right through to parenteral nutrition, which is sometimes needed. There will be many hundreds of patients in this country today who will be on parenteral nutrition and whose life will be maintained by it.
It is also correct that there are patients who come in and cannot swallow. That swallowing assessment is usually made by a speech therapist. We live in a
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When the Minister responds to this amendment, will he be able to promise the Committee and all the vulnerable patients in this country that inspection standards will look carefully and rigorously at fluid and food for people who are vulnerable? My profession may not love me for saying that he might also want to ask the medical profession to be very clear in its definition of what a treatment is and of what falls under good standard nursing care, which should be the right of every patient. Clarification about advance statements will also be helpful. They will come in and will be important for every decision made for a patient who cannot make a decision for themselves, because those statements will inform that decision-making. They will need to be taken into account as the decisions are formulated.
In a debate such as this, we very much miss Lord Carter, who worked so hard on the Mental Capacity Bill and on mental health. He, perhaps more than anyone, had knowledge and an ability to assimilate all the bits of information built up over so many years of experience. I am sure that the Minister will do admirably in his summing up and in his response to this very important amendment—important because of the principle laid out.
Lord Carlile of Berriew: My long-standing and considerable affection for the noble Baroness, Lady Knight, is equalled by my admiration for her ability to touch sometimes upon real and important issues. She has done exactly that today, and I am sure that I speak for everyone on these Benches when I say that we support the purpose and spirit of her amendment. This Chamber is full of lawyers and other experts, such as doctors, who tend towards the theoretical. The noble Baroness tends to avoid the theoretical by
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What the noble Baroness has said has been evidence-based in every instance. The law is experienced in cases in which people refuse to take food, because hospitals have, from time to time, brought actions in the High Court to ensure that they are safe in their decision to compel patients to take food. The best-known case is that of Ian Brady, who was refusing to take food, and Ashworth Hospital was authorised to force feed him as part of his therapy. But we do not have anything like the same experience of actions in which a hospital is pursued for its failure to give food to a patient, because it is usually too late. As the noble Lord, Lord Patten, reminded us in another powerful speech, there are already international obligations to provide food to patients; the new United Nations convention to which he referred is the latest, but we have heard also about Article 2, one of the most fundamental provisions of the European Convention on Human Rights. There is a right to be fed and there is a right to expect those treating a person in hospital to feed that person.
Those of us who have elderly relatives—in my case, I am happy to say, an extremely feisty, determined and independent mother in her 90s—know that determined elderly people like her, who value their independence, still live alone and look after themselves, are afraid of what will happen to them if they go into hospital. When they are in their own homes, they feel very independent and are very capable. But sometimes, when an elderly person of a similar age has been taken to a hospital due to an episode of illness, they can appear to be completely disoriented and they feel utterly disempowered. The noble Baroness’s amendment would ensure that we could say to very elderly people, “You don’t need to be afraid to go into hospital, because you have some rights”. Those rights would be there, not only under theoretical international obligations, but written down, either in statutory form or in codes of practice.
I would like to hear the Minister say that the Government recognise that there is a problem, that from time to time some very bad cases appear, as described by the noble Baroness, and that it would be right, somewhere in the framework—whether in the Act or in codes of practice—to ensure that it is made clear to clinicians at all levels that potentially vulnerable patients cannot be left to starve and that they have the right to food and/or liquid—bearing in mind the problems expertly aired by the noble Baroness, Lady Finlay. I hope that the Minister will support at least some of the principles behind the amendment.
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