Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

Examination of Witnesses (Questions 140-150)



  Q140  Baroness Knight of Collingtree: Could I say a couple of words on that last point because I know of one organisation already which provides people with a card which they carry, like a donor card, which seems a lot less complicated than having registers and all the rest of it, which says, "In the event of my becoming unconscious and being in hospital, I want to be kept alive". Now, that has got just as much status as a donor card and I think that is important not to forget.

  Mr Goss: Absolutely.

  Q141  Baroness Knight of Collingtree: The questions I really want to ask have been prefaced in the explanatory text prior to questions, "Following the House of Lords judgment in the Bland case, medical treatment includes the provision of artificial nutrition and hydration." Now, I want to make it absolutely clear for the record that that was the BMA's decision and it is not legal at this time, but the draft Bill, if enacted, would give the Bland decision apparently a statutory basis, and this is a point which is worrying a very great many number of people, and it is also the point at which my question falls into two parts. One is not only the provision of artificial nutrition and hydration through a tube down the nose or a peg in the stomach, but also even when patients are able to take food and liquids through the normal way, that also, since the Bland judgment, has been decided is medical treatment. In other words, when we all go for a meal, we are actually having medical treatment, which I am very concerned about, I may tell you. Is it your view that that definition of medical treatment should (a) include the provision of artificial nutrition and hydration and (b) the normal intake of food?

  Mr Evers: This question is a very emotive question.

  Q142  Baroness Knight of Collingtree: It is a very important one.

  Mr Evers: It is very easily misinterpreted. The Alzheimer's Society and our counsel believe that it is very inappropriate for a person with advanced dementia to be given artificial hydration and nutrition solely for the purposes of prolonging life. The purpose should undoubtedly be about maximising the quality of life to the individual at that stage and the BMA, as you have said, have given guidelines on withholding and withdrawing treatment. We have serious, ongoing concerns about the frequency with which people in the terminal stages of dementia continue to be artificially fed and hydrated. It is important that we know that there are alternatives to that because when somebody can no longer eat or take fluids, then there are ways of one-to-one nursing, providing water, sips of water for the individual, sitting by the person and giving them basic comfort. These are real practical alternatives to the invasive approaches of tube feeding, so these are issues that we think need to be taken into account and there are options within the Bill to do that.

  Q143  Baroness Knight of Collingtree: Before you finish, Mr Evers, you said "the quality of life". Now, that is one of the big problems, is it not, because who is to decide on a person's quality of life? If a person is paralysed, one doctor may say, "Your quality of life is so bad, you may just as well die", whereas the person who actually is paralysed may not think along those lines. Is that not a difficulty in saying that you decide by the quality of life?

  Mr Evers: It is a difficulty, but we can also define quality of life. There is a lot of discussion and research into how quality of life is decided and, in addition, the opportunity for advance directives and statements whereby an individual can make provision for what they wish during those circumstances. Thirdly, where there is a close relative, that relative or partner will undoubtedly know how that individual would have wanted to be treated in those circumstances.

  Q144  Baroness Knight of Collingtree: I am so sorry, but you are not answering the question I have put. The question I have put is: would you think it right to call feeding people or giving them water medically treating them? I did put it into two separate categories, one, if it is the peg or the tube and, two, if it is the normal way of eating. I just want to know whether you think that should be described as medical treatment or not.

  Mr Evers: Medical treatment would include basic care. That is our understanding and basic care would include, as I have described, giving sips of water, giving comfort and that is what we believe should be included and the individual should have the option to have that made available to them.

  Mr Goss: It is difficult to know where to step in on this one, but I will just offer a few thoughts that I think may bear on the subject. There is a great danger of allowing the issue of artificial feeding and hydration to get blown out of all proportion and hijack the Bill. Very few people, in our experience from our helpline, letters and e-mails, actually opt for this form of refusal. In any case, if I have read the Bill correctly, attorneys will only be able to make this choice if specifically given the power to do so under clause 10, provided of course that the BMA's plea for its removal is not accepted. I stand to be corrected by Baroness Knight because I am not a lawyer, but we thought that, though we are probably misinformed, artificial feeding and hydration is treatment and it is certainly invasive treatment. It has always been recognised that we have the right to refuse treatment for any reason, for no reason or an apparently irrational reason, regardless of consequences. Now, it has been suggested that withholding artificial treatment, feeding, is euthanasia by neglect, as I think I saw the phrase in the questions. Well, we would only comment that withholding such treatment at the express request of the person involved can no more be classed as euthanasia by neglect than not amputating both legs of a patient with circulatory disease in order to preserve life.

  Q145  Baroness Knight of Collingtree: That I fully understand, if anyone does not wish to be fed in that way, but I am still wanting an answer to the question because it is also the case that withholding food and liquid when anyone can take it normally is classified as medical treatment. Do you think that is correct or not?

  Mr Goss: I can only speak directly for Patient Concern. We think that what one might term "normal feeding" is not medical treatment, but artificial feeding is medical treatment on the grounds that it is invasive and we have in fact in our organisation, sadly, either individuals themselves or more usually their nearest and dearest who have said that the individual has told us that if they had known what was involved with invasive, artificial treatment, they would have declined it.

  Ms Willmington: My understanding of basic care is that it is about making sure that that person is comfortable and that everybody should always have access to basic care, so they should always be made comfortable and they should always have what we are talking about in terms of moistening of the lips and sips of water if that is appropriate, so our definition of basic care is anything that I would in my non-medical way term as good, palliative care really and that is about quality of care.

  Mr Goss: Can I just add one further thought on the concept of basic care. It may be for consideration that this ought to be defined in the Bill and if that were the case, we would suggest that it has three elements. It consists of feeding those people who are able to accept food and liquids in the normal manner rather than by invasive treatment, it would include basic hygiene because, after all, that is in the individual's best interests, for the benefit of staff and other patients, and, lastly, pain relief. There is a difference of opinion on the question of pain relief. Some people take the view that it is an integral part of palliative care and, therefore, should not be optional. On the other hand, we find people who take the view that they would rather remain conscious as far as possible and, therefore, do not necessarily want full pain care. Lastly, one has to remark that there are some people who believe in the redemptive power of suffering.

  Q146  Baroness Knight of Collingtree: I do not think we are so much concerned about that. There are two other points and both of them, oddly enough, touch on something which has been said previously this afternoon. First of all, do you think that the provision of basic care, and I am grateful for Ms Willmington's description of that, such as food and liquid, should that be excluded from the scope of an advance refusal or even perhaps the powers of attorney to refuse treatment?

  Mr Goss: It looks like I have been put on the spot again! We would take the view at Patient Concern that basic care should cover normal feeding, ie, without any technical things involved and you should not be allowed to refuse that per se, but when it comes to invasive treatment, well, you should have the right on that the same as anything else.

  Ms Willmington: My understanding is that we made a clear distinction between medical treatment and basic care and that medical treatment is something that you can refuse, but everybody should have access to basic care.

  Q147  Mr Burstow: I just wanted to pick up on a thread from a previous question, if I may, which was the point that Mr Goss was making about an anxiety that he and possibly others might have that this question of artificial feeding and hydration and so on could somehow hijack the Bill. One of the things that I understand the Making Decisions Alliance was established to do was to enter into dialogue with other organisations that might have such concerns. I would be very interested to hear how successful that dialogue has been and how many other organisations have responded to that.

  Mr Goss: I have been invited to a meeting of these groups tomorrow and I will make a point of attending to hear their views.

  Ms Willmington: I think the other point is that the joint chairs of the Making Decisions Alliance will actually be present at tomorrow's session, so they are probably in a slightly better position to answer that one.

  Q148  Baroness Knight of Collingtree: So we watch this space! Finally, could I ask you this: in what circumstances might starving a patient to death through the withdrawal of artificial nutrition and hydration be in that person's best interests?

  Mr Goss: The answer is, I think, that it is only in the best interests of a patient who has clearly and specifically opted for this rather than enduring a long, drawn out, living death. In effect, it is the least worst option or, alternatively, if the patient has given the choice to their clinician because they do not want to make it themselves, that is what the clinician decides is in the best interests of the patient.

  Mr Foster: I cannot speak from the Mind perspective, it is in an entirely personal capacity, but my father was in intensive care and was artificially ventilated for some weeks and was artificially fed. There was a point when he was rallying but there was a point at which his systems began breaking down completely, at which point I do not think the family, who loved him very much, wanted him to return. There was a point at which we felt, "This cannot be right. We are artificially prolonging his life when there is no prospect of his recovery". I think that is a relevant factor. That was the situation but it was very difficult because it was put by the medics on that occasion, we were asked for our views but we could not possibly give a view whether it was in his best interests or not. The doctor very helpfully said, "I should really make the decision, I just wanted to know what you thought based on your knowledge of him. You are quite right, he would not have wanted to be kept alive like that." I do not know if that helps.

  Chairman: Thank you. There is an important point on the Human Rights Act.

  Q149  Jim Dowd: Yes, the Human Rights Act, Article 2, Schedule 1. Committee members have received various views on this. To some degree with most lawyers you pay your money and take your choice, but it depends who you pay, and never ask the question until you know the answer. The Joint Committee has said this is compatible, we have had other submissions it is not. What is your view on the compatibility of the provisions in the Bill?

  Mr Goss: My understanding, and I am not a lawyer and I say that again, is that the Human Rights Act is concerned with right to life which is not about specifying an individual obligation to life. The obligation to life is essentially assumed by some religious faiths which we are all at liberty to accept or reject. We feel in the end the law should not allow a minority set of such views to prevail over the majority and be enforced on them. I am sorry if that is provocative but we are, as my good friend said, into emotional territory here.

  Mr Foster: May I approach this from a slightly different angle, again a lawyer's angle. I am pleased to say all advice of mine is free of charge.

  Q150  Jim Dowd: In which case it may be worth what we pay for it!

  Mr Foster: We discussed this before coming before this Committee. I think the problem is arising because Article 2 of the European Convention, which is as you say in Schedule 1 of the Act, talks about right to life, there is nothing to say you have an obligation to keep yourself alive whether you like it or not. The problem comes because in the Human Rights Act itself there is a duty placed upon public authorities to uphold and enforce the Convention rights. I can only speak again from a personal point of view, I would say there is no incompatibility between the draft Bill and the European Convention, the reason being that the duty upon a public authority is to uphold a person's right to life. If an individual said, "I actually do not wish to be kept alive in these circumstances"—and Mind hears from a lot of people who say, "I cannot tolerate this any more, I have been through this, they have pulled me back and back and frankly I am fed up with it"—at that point I think the individual is saying, "I do not wish to uphold my right to life". Then, of course, there is an issue about how much reliance we put upon that and what their state of mind was when they said those things, which of course must be looked at. But ultimately I would say that has let the public authority off the hook from their duty to keep the person alive when they have made it clear they do not wish to be. That is the best I can do.

  Jim Dowd: I am very grateful for that. I am fairly certain we have not heard the last of that.

  Chairman: We did have a question about education, Question 18. If you would like to write to us on that, that would be helpful. We have touched on the question of advocacy but if there is anything else you would like to say about it, that would be helpful too.

  Baroness Barker: Can I ask, when you answer that question, there is just one particular question I would like you to address, and it is whether the advocacy services established for the purposes of this Bill need to be separate from other advocacy services. A number of us around this table have dealt with a variety of different Bills in which the issue of advocacy has come up. It is really whether it is possible to have a multiple advocacy service. If you could address that, that would be helpful.

  Mrs Humble: I was going to raise that and ask you a series of questions on advocacy as President of Blackpool Advocacy. Much of the funding for advocacy services now is short-term funding to develop specific services. Where is the money going to come from? Should there be national funding for a national service? Should it be national funding given to the local councils to develop local services responsive to their needs? Should it be ring-fenced funding and therefore on-going funding? Then of course there is the issue about the quality of the service, monitoring it and also letting people know about the service and what it means. This is picking up in a way on Jim Dowd's point, because simply using the word "advocate", a lot of people think "lawyer", and it is not a lawyer, so a lot of people do not understand what advocacy services do. How best could people out there who could benefit from the services know they are out there. If you could address those issues, that would be helpful.

  Chairman: Another extremely important question is Question 21. We would like your views in writing on what you think the effects would be if your proposals are not implemented.

  Mr Burstow: Allied to that, it would be useful if you could give us as part of the response to Question 21 some indication as to what the minimum requirement would be, ie what your sense of priorities would be amongst the things you have put forward to us for any additional resources which might be available.

  Chairman: Thank you very much indeed. It has been very helpful, a most stimulating session, and we have some more to come, as you know.

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