Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence


Examination of Witnesses (Questions 200-219)

MR STEVE BROACH, MS CAROLINE CLIPSON, MR RICHARD KRAMER, MS HAZEL MORGAN AND MS SUSANNAH SEYMAN

17 SEPTEMBER 2003

  Q200  Stephen Hesford: May I just continue on that. Could you foresee a circumstance where a person had a reasonable belief that something should be done that they did not objectively believe or hold the view that they reasonably believed? What are the circumstances in which they would not themselves objectively hold that view?

  Mr Broach: We are dealing with a client group who are born with conditions that will impair capacity in adult life, and carers of people who are born with a learning disability or with autism will have been with that person all the way through their childhood and into their adulthood and I think that many of those carers will not consider the possibility where, at 18, suddenly that person will be able to make decisions for themselves and therefore they believe it is completely reasonable to say, "I have cared for this person throughout their life and therefore I will continue to do so and I will continue to make decisions on their behalf." We would challenge that. We would not accept that.

  Q201  Stephen Hesford: If that were taken to its logical conclusion, that would not necessarily be a reasonable belief.

  Mr Broach: Yes, indeed, the reasonableness of it would certainly be challenged, but we are asking for that problem to be omitted from the Bill.

  Q202  Stephen Hesford: In law, the phrase "reasonable belief", which is used a lot, is in fact an objective test.

  Mr Broach: And, as was described by our colleagues yesterday, our concern is how the Bill will be used in practice in that carers may see themselves as being people such as, "I am a reasonable person and I believe that what I am doing is perfectly acceptable."

  Q203  Stephen Hesford: This is actually quite a tough test for a carer to undertake.

  Mr Broach: Our position is that we would prefer a slightly tougher one.

  Chairman: We will now move on to court of protection.

  Q204  Lord Pearson of Rannoch: Do you feel that there are sufficient checks and balances on the face of the Bill in relation to the powers of court-appointed deputies?

  Q205  Lord Pearson of Rannoch: Will the court of protection be sufficiently accessible to those with mental incapacity?

  Mr Broach: I will take the deputies question first, if I may. Our colleagues yesterday outlined that the Bill was in accordance with the court of protection's duty to investigate conflicts of interest when deputies are appointed. For example, if a care home manager was already the deputy for five of his residents and a sixth application was made, we would want the court of protection to investigate whether that was appropriate. We also want to see a clear link to the protection of vulnerable adults registers being established and Criminal Records Bureau checks. We have said very clearly in our written evidence that we do not think that deputies should be able to give authorisation for the withdrawal of artificial food and hydration, unlike our position on lasting powers of attorney because there the attorney is at least given that authority by the person when they have capacity. Those are the points that were made yesterday, but I would like to make some additional points. Firstly, our experiences we have seen so far in Scotland suggested that families are being encouraged perhaps to apply for wider powers than they need because it is seen to be more convenient for deputies to be appointed across a very wide set of grounds. The Bill itself precludes that at 16(4) but we want to make sure it is very clear in guidance that the deputies should only be appointed with the narrowest possible remit and indeed for the shortest possible time, if that is appropriate for the person. An area that was not touched on yesterday at all was appointeeship and, with the Bill creating deputies to deal with a person's finances, we then have potentially the double situation where appointees exist governed by a completely separate set of regulations to those who are managing a person's affairs as a deputy. So, we think that appointees should be brought in to the scope of this Bill. Our final concern around deputies is that the borderline between the general authority and the occasion when you would apply to become a deputy is very unclear at the moment because, with the general authority being so broad, we do not really see many situations where a family or carer would feel the need to apply to become a deputy. That is a problem which is again a reason why the general authority needs to be more circumscribed.

  Chairman: We will now move to withdrawal of treatment. I am sure you will not be surprised to learn that we have received an enormous amount of evidence and submissions and letters on the whole subject of withdrawal of treatment, past directives and past orders etc.

  Q206  Baroness Knight of Collingtree: Up until now, we have been dealing with people in whom you are interested when they are well and in normal life environment. Can we move on to the question of when they are ill. As my Lord Chairman says, we have had an enormous number, almost an unprecedented number in my experience, of letters expressing concern on this matter. Do you agree that the definition of "medical treatment" should include the provision of artificial nutrition and hydration? The nutrition and hydration is not the artificial part, it is conveying the nutrition and hydration. Do you see that that should be medical treatment or not?

  Mr Kramer: We are going to repeat very much what was said yesterday in terms of, is artificial nutrition and hydration medical treatment or not? The view that was expressed yesterday and indeed we are giving today is that it is medical treatment and that you make a distinction between that and basic care. We also acknowledge that decisions on withdrawing artificial nutrition and hydration raise very difficult ethical personal issues and there are points of views and I know that the Committee have received huge representations. So, decisions on withdrawing artificial nutrition and hydration in cases where somebody lacks capacity are decisions that need to be taken very, very carefully and that, in circumstances where there is a complete inability for someone to have any physical or emotional experience at all in terms of their function of the brain where there is no activity in the cortex, so that their brain is not functioning in terms of understanding and interacting with their environment, and where there is no prospect of recovery at all, then the safeguard is needed in terms of withdrawing artificial nutrition and hydration. I think the point that has been made by the Scottish Law Society and by the MDA yesterday is the concern over this issue having undue prominence in the discussions on this Bill when this Bill is about principally supporting people to make decisions. In any event, I think it will strengthen the right of carers to be involved in medical decision making, strengthen the right of the individual to do so and make sure that health professionals are more accountable for the decisions which they are making, which I think is in the interests of all parties because health professionals not only expect their decisions to be reviewed but they also want to have greater certainty in terms of the decisions they do make.

  Q207  Baroness Knight of Collingtree: That is very clear except for one point that you raised. I was a little surprised that you feel that the decision as to whether or not a person wished to live was a rather minor decision. I would have thought it was a major decision.

  Mr Kramer: I do not think I have said that. I accept that these decisions are very, very serious. We are dealing with decisions on withdrawal of artificial nutrition and hydration. I think that they are very, very serious decisions and that they need very serious decision making, but they are seen by the MDA as a medical decision.

  Q208  Baroness Knight of Collingtree: Yes and that was the question I asked you. Now I would like to ask whether you think that it should be classified as medical treatment when a patient is able to take food or water in a normal way. Should the ordinary business of eating be called medical treatment?

  Mr Broach: I think we would refer you back to the answer that was given yesterday.

  Q209  Baroness Knight of Collingtree: I am very interested in what was said yesterday but I am more interested at the moment in what you say.

  Mr Broach: Our position is that basic care, which includes provision of food and fluids by normal means if you like, should not be covered by advance directives and by lasting powers of attorney—that was the position that was given yesterday—and that therefore that they do not constitute medical treatment.

  Q210  Baroness Knight of Collingtree: Do you think that the provision of basic care such as foods and fluid be excluded from the scope of an advance refusal or from the powers of attorneys or deputies to refuse treatment?

  Mr Broach: Yes.

  Q211  Baroness Knight of Collingtree: Finally, I would like to ask you this and this is a very important question indeed. In what circumstance might you consider that starving a patient to death through the withdrawal of artificial nutrition and hydration would be in that patient's best interests?

  Mr Kramer: I think I have set out the criteria in terms of when the decision of withdrawing artificial nutrition and hydration would be taken in the best interests where there is complete inability to have any physical emotional experience whether in the present time or in the future because there is no activity in the cerebral cortex and there is no prospect of recovery. Subject to that, the health professional will have to make that decision and seek second opinion for making the decision.

  Q212  Baroness Knight of Collingtree: You will be aware that there are now in production by some groups cards like donor cards which state perfectly clearly that the patient, if unconscious, still wishes to be given facility to live insofar as he or she can. Would you allow credence to be accepted on a donor card like that?

  Mr Broach: Yes and I think that is a very helpful point to make because we are answering today for people who were born with incapacity and who cannot plan for their future incapacity. If you have capacity and you wish to make a positive advance statement of that sort, much as you are able to make an advance refusal, then you should be able to do so and we think that the Bill should include advance statements such as request for treatment, which is the point that we were making earlier.

  Q213  Baroness Knight of Collingtree: I can only say that I am grateful for that reply but the question of best interests is not quite the same as was covered in the first point. As regards the question of a person being starved to death or dying from lack of liquid, it is very difficult to imagine any circumstances when dying of thirst could be actually in the best interests of the patient concerned.

  Mr Kramer: Inevitably on these issues because there are huge ethical, moral and personal interests, one's personal perspective does come into play and I think that is why people have different views. In terms of technological development, it is possible to prolong someone's life indefinitely through artificial nutrition and hydration, even where there is no prospect of recovery and even where there is no activity in the brain. That is why decisions on withdrawal of artificial nutrition and hydration are important and that is why there need to be important safeguards, but there is a concern about artificially prolonging someone's life, prolonging someone's life in an artificial way, and not allowing people to die naturally. That is my personal perspective. I know that Hazel will want to give another personal perspective, but I think it is important to listen to different views.

  Ms Morgan: The issue of safeguards is of enormous importance. We are talking about people who are very, very vulnerable, incapacitated and possibly unable to make decisions. My perspective comes from a personal one because my son actually received nutrition and hydration through peg-feeding in the final months of his life, he having been born with learning disabilities and having had severe strokes. So, I am speaking personally here. It is of the utmost importance that people with learning disabilities and people who find themselves in this situation have sufficient safeguards in order that their lives are not put at risk, and I do have a very serious concern about this for obvious reasons. I also would like to make the point that there are quite a lot of people with severe and profound learning disabilities who live with peg-feeding and I think there is a danger that we are thinking about dying rather than about living and I do think that this is also an important issue. My son was able to live for another 11 months with this feeding, it was not withdrawn, and we enjoyed life together during those months. So, I think there are some enormously important issues and that safeguards have to be very, very, very, very tough.

  Mr Broach: Just to bring us back to try and give the whole MDA perspective because obviously you heard the group yesterday and us today. The key answer to the question, "When would it be in the person's best interests to have the nutrition and hydration withdrawn?" is, "When they have expressly wished it to be so when they had capacity." So, that is an absolute position of the Making Decisions Alliance. In terms of our group, the issue is far more complicated because people are unlikely to be able to make those decisions for themselves. However, having said that, there will be many people within our groups who can express their wishes or feelings in advance statements and perhaps potentially even in advance directives and I think it is really important that we do not lose sight of the need for positive advance statements on medical but also on other issues because I think they are a very valuable way of recording a person's wishes and feelings.

  Q214  Chairman: I am a little puzzled about the distinction that has been made between the artificial provision of nutrition and hydration and the natural provision. Is the answer in the answer which your colleague gave of activity in the brain? Clearly, if you are able to take food and to eat naturally, there will be activity in the brain presumably. Whereas, if you are being artificially fed . . . What is the logic behind the distinction between the artificial provision and the natural provision?

  Mr Kramer: As a non-doctor, I will try and answer that question. My understanding is—and, please, do correct me if I am wrong—that somebody can receive artificial nutrition and hydration for a short period of time. They may go into hospital for problems with their stomach and they need artificial nutrition and hydration for a short period of time and that may actually benefit the individual. Artificial nutrition and hydration is not just provided in those end-of-life situations where somebody cannot function in terms of their brain and there is no prospect of recovery. It can be used as an intervention at earlier stages.

  Q215  Chairman: I have someone in my family with motor neurone disease who was fed and drank artificially for something like a year but his brain was still active.

  Mr Kramer: My personal experience is of somebody who was receiving artificial nutrition and hydration but chose—he had the capacity to do so—not to do so. He could have gone home and he would not have died immediately but his health would have badly deteriorated. He took a decision—it was his decision—that he felt that his quality of life and his meaning in life would have been better if he did not continue to receive that artificial nutrition and hydration. From my limited experience—and this is again from very much a personal perspective—it is not death that is a fear for people but the process of dying and the difficult experience through that.

  Baroness Knight of Collingtree: Could I clear up one matter very quickly because it was brought up twice yesterday and has been brought up today. The House of Lords accepted last Friday in giving a third reading to a Bill that said any person who asked not to receive artificial nutrition and hydration should not have to do it. So, can we move that point out of any future discussion because that is agreed on every side.

  Q216  Mr Bercow: I think I am clear about Mr Kramer's answer to Baroness Knight, but I would like to do more than think, I would like to be certain, so let us establish this for the avoidance of doubt. If someone gives advance notification that he or she definitely wishes to have his or her life prolonged by artificial hydration or if someone gives no indication either way, he or she, as far as you are concerned, should receive absolute protection. Certainly that would be my instinctive view, am I clear that that is yours?

  Mr Kramer: That is a good question. If the advance directive is not clear and does not mention artificial nutrition and hydration, then the decision will be best interest and involvement of the individual or those close to him. The harder point to your question is this, if it is specifically mentioned in an advance directive and whether it has to be followed in all circumstances. I think—and this is my personal view—that it would be possible for a doctor to review that decision where the alternative is artificially prolonging one's life when there is no prospect of recovery in the terms I have suggested.

  Q217  Mr Bercow: I must say that, having felt momentarily uplifted by your previous replies, I am really very anxious now. That is not your fault but it seems to me that we are in danger of moving away from the primacy of the ethical principle towards the triumph of administrative convenience and, dare I say it, even considerations of the money men at the Treasury. That is what worries me about this. What I am getting, Mr Kramer, is that, first of all, advance notification you fear . . . Perhaps I should not use that evaluative term. Point one, advance notification you suggest will not be an absolute protection. Point two, since you referred to considerations of family members, can I put it to you that the person who is the most vulnerable of all is a person who might well have given advance notification but who has no close family relatives and whose earlier judgment is likely to play very much second fiddle to the current view of a particular doctor.

  Mr Kramer: Yes. If it is in someone's advance directive, it will have to be taken into account. What I am saying is not that a doctor will see the decision to say, "I want artificial nutrition and hydration in any event" and the health professional says, "I am going to go back on that" because that cannot be done, but there needs to be a time of review of that decision and, if those safeguards are met where there is no prospect of recovery and there is no activity in the brain, then I think that, in those circumstances, it would be permissible to say that the right to artificial nutrition and hydration on an indefinite basis is not absolute.

  Q218  Mr Bercow: You would be content with that?

  Mr Kramer: This is again my personal view so, please, do correct me. I would not want you to think otherwise. The power at consideration is to give respect to that individual's views and, if that is reflected in advance, that should be reflected in practice. However, there has to be a decision in terms of what is in that best interests and whether it is in the best interests of a person to keep someone artificially alive in circumstances that I have suggested where there is no prospect of recovery etc. I think these things are very difficult and do need to be resolved in a proper way in terms of a second opinion and maybe a decision of the court of protection, but I would not be uncomfortable in saying that there should be a right to keep people alive indefinitely when there is no prospect of recovery and there is no activity in the brain.

  Mr Broach: I think we need to clarify what the Bill says because the Bill at the moment only provides for advance refusal to the treatment which are absolute statements unless they are undermined—

  Q219  Chairman: We are coming on to that.

  Mr Broach: We would argue that there does need to be provision for positive advance statements on the face of the Bill, but the defence is that you cannot select treatment, you can only consent to treatment that is offered to you. That is the argument that has been put to me as to why advance statements cannot have the same level of authority in the Bill as advance refusals have, and that is a legal point which I do not have the answer to but that is the argument that has been made.

  Ms Morgan: The MDA has said it is generally applied. It is so difficult to get a common view because it is such an emotive and difficult issue. For people who are judged to lack capacity, there is a real, real danger here that decisions are going to be made and it comes back to the best interests point and to think very much of the best interests of that person/individual in that situation. Where there is no hope of recovery is a very broad phrase. There can be limited recovery and sometimes there can be recovery so that the artificial nutrition and hydration is not necessary. Sometimes, people with profound learning disabilities who receive artificial hydration and nutrition can live for many years.

  Mr Kramer: Yes, but we need to be very specific in terms of the safeguards. I take your point. You are not bound to detect a difference of opinion.

  Ms Morgan: No, but I just wanted to clarify it.


 
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