Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

Examination of Witnesses (Questions 400-419)


9 OCTOBER 2003

  Q400  Mrs Humble: Would you recommend to us that rather than have general authority we have the Scottish system where there is the three different elements, there is the legal decision-making process, the health decision-making process and there is a third element, the social care process. Are you suggesting to us that we should be filling the gap by having a separate function, a separate way of making those decisions? If so how would that work in practice? One of the advantages of having a general authority is that it is not high bound by rules and regulations and having to seek advice from another authority because we are often talking about very day-to-day decisions, decisions that need to be made straightaway and are often not in themselves hugely important or have huge consequences but are nevertheless vital to that person's day-to-day existence.

  Mr Bogle: I agree. The difficulty is that the law is rather a blunt instrument. Most of those activities are carried out currently without any intervention by the law and relatively rarely anything ends up in front of the court. In a sense although there is a lacuna and it ought to be filled one needs to be careful about using the blunt instrument of the statute to try and set up a framework for decisions that really, as you say, are day-to-day decisions that nobody is going to challenge.

  Q401  Mrs Humble: Except there are often disagreements with family members and paid carers or statutory agencies, so it may not go to court but it can go through complaint procedures and cause a lot of aggravation.

  Mr Bogle: Yes, and equally inevitably when we lawyers and judges get hold of it there will end up being rulings with wide-ranging consequences.

  Lord Habgood: I read this with some bewilderment, who sets up this authority? Who decides that B is a suitable person is to do all these things? Who checks that B does not embezzle the patient's funds? Who decides which person may do these acts?

  Q402  Chairman: It is a functional approach. If that happened you would decide that I should be the best friend on the protection order.

  Lord Habgood: Who decides?

  Q403  Chairman: I volunteered.

  Lord Habgood: If I am mentally incapacitated—which I am beginning to feel I am—how do I tell you I want you to act on my behalf and spend my money?

  Q404  Chairman: Then I have the protection of the law in this Bill.

  Lord Habgood: How do I tell you? If I cannot do it who can?

  Q405  Chairman: If are you completely incapacitated you will have a doctor or indeed a relative.

  Lord Habgood: Should it not say in the Bill how such a person is designated?

  Q406  Lord Rix: The draft Bill authorises unwise decision-making by making it clear that lack of wisdom does not mean lack of capacity. How do family carers and others reconcile the duty of care with empowering decisions that are seriously or consistently unwise. You talked about teeth: Somebody may well have rotting teeth but they expressed a wish they do not want to go and have them out. I just want to know how the Bill could cope with that.

  Mr Bogle: Going back to the point about how things are done in the Scotland, I presume you were not referring to the Adults with Incapacity (Scotland) Act you were referring to the general law in Scotland?

  Q407  Mrs Humble: I was referring to the equivalent act in Scotland. We had a presentation from Scottish lawyers out how that worked and how they did not have the general authority but they had set up different organisations to do a similar job to the one that is outlined in the general authority. Not quite, there were differences and as a non-lawyer I would not put words into the mouths of the lawyers who sat in front of us.

  Mr Bogle: There are some problems with the working of that Act in Scotland. I apprehend from reading some of the evidence that was the feeling among some of the lawyers from Scotland who gave evidence to you, and also particularly among the clinicians, non-lawyers, doctors. The problem is not so much how you protect people from unwise day-to-day decisions so much as straying into the whole area of medical decision-making. That is where it starts to get much more confusing and complicated rather than the kind of decision-making for mentally incapacitated, disabled or mentally ill persons that I suspect your Lordship is talking about. That is the area where the problems arise. If you have a power and give it to a third party or indeed if you allow a piece of paper, a legal instrument, which is what an advance decision would be if it were in writing (but of course this Bill does not require it to be in writing) then you have a situation where somebody and something can direct a person who is a medical practitioner, who is qualified in the area and is clinically able to deal with a particular patient, (it could be a psychiatrist, but it need not necessarily be), to do something that he knows is clinically negligent and yet he will be required to do it under pain of sanction. That is requiring something of a doctor that we should never really require. That is where the danger in giving this broad authority backed up through attorneys and advance directives, begins to create problems. Whilst I would agree with you and with Mrs Humble there is lacuna that needs to be filled in so filling it as widely as the Bill does we then run into an area where problems arise and doctors are then being told by the lasting attorney or advance directive that if you do not withdraw this treatment, if you do not stop the treatment, and I have the power to tell you to stop, because this Bill has given me that power, then you will be committing a serious disciplinary offence. Ten the doctor is obliged to do something that may well cause harm to the patient but which, at the end of the day, if he does not do, will result in a very severe sanction against him. That is what troubles me.

  Q408  Lord Rix: How do you protect the carer? Suppose an unwise decision was taken by a person who was deemed to have capacity but, nevertheless, an unwise decision was taken and the carer says no and stops that decision being fulfilled. What protection is there for the carer so that he or she is not taken to court by a relative who thinks that the unwise decision should have been allowed?

  Mr Bogle: My immediate response to that would be general law in relation to necessity. I imagine you are thinking of a circumstance where there is an argument over whether necessity applies.

  Q409  Lord Rix: Yes.

  Mr Bogle: That would be a matter ultimately for the court to determine of course and any doctor or carer exercising good faith as the law stands at the moment taking an action and exercising such discretion as they have in the clinical best interests of the patient so to act, as well as the general best interest. I do not think there will be any sanction against a person in the way that you envisage. There would however be such a sanction against the doctor if you put the very strong powers that are envisaged under this Bill into the hands of a person who is not clinically qualified.

  Q410  Chairman: In the examples that you give of a doctor surely if the doctor had a moral or religious belief that said that he would not do that then you are protected, they will not be told to do something which is against their moral or religious belief.

  Mr Bogle: I am glad you asked that question. I apprehend we have some members of the Muslim Doctors Federation. Yes, doctors would be obliged under this Bill as it stands. There is no "conscience" clause in the Bill. But equally one has to ask oneself, to what extent would the average doctor say I have a conscientious objection to delivering clinically negligent services to my patient? I am not sure that is necessarily a matter of value systems ,belief-systems or faith so much as simply a matter of good clinical practice. All doctors whether they be Muslims, Jews, Christians or have no faith at all are going to say surely, are they not, that they do not want to deliver a clinically negligent service.

  Q411  Baroness McIntosh of Hudnall: I am very confused by this argument for one reason, if I as a competent person decides that I am faced with the treatment which it would be clinical negligent of my medical adviser not to give me but nonetheless I decline to take it the medical adviser in that case is at no risk whatsoever of being held to account for not delivering that treatment. As I understand it, and I defer to our witness who is a lawyer, if somebody is given a power of attorney that power is given by the person who originally had the power and the donee therefore acts as if he or she were that person. I cannot see why a doctor is at any greater risk in that situation than they would be if the patient were making the decision on his or her own behalf.

  Mr Bogle: You have hit the nail on the head. The problem is that the original person making the decision has a perfect right to say, because of the principle of autonomy, I do not want this treatment but they will suffer the consequence, not the third party. In the case of exercising a power of attorney albeit appointed by the patient if the decision is clinically negligent the attorney will not suffer consequences, only the patient.

  Q412  Baroness McIntosh of Hudnall: With great respect that is not the point that is being advanced to us, what is being advanced to us is that the doctor will suffer the consequences, which is a different matter.

  Mr Bogle: The doctor will suffer the consequences for the following reasons. If the third party, the attorney, makes or requires a decision which he in good faith believes is right for the patient (and he will believe it is in the patient's best interests, or else, presumably, he would not be advancing it) and the decision is clinically negligent then the doctor is faced with a problem which is very different than if the patient himself asks. This is because a person who is not going to suffer the consequences and has no duty of care is requiring the doctor to do what is clinically negligent. In those circumstances if the doctor decides not do that he will legally be deemed to oppose the consent of the patient exercised by an attorney. Consent having been withdrawn, the doctor in giving treatment he believes clinically necessary will then not only be committing what potentially is a disciplinary offence but technically what is also a criminal assault.

  Chairman: We now move on to new decision-making mechanisms.

  Q413  Jim Dowd: Before I move to questions four and five apropos of what was said earlier about best interests and people not knowing necessarily themselves, when my mother was in the latter stages of the breast cancer, to which she eventually succumbed, she was offered chemotherapy and backed by her medical advisers at Kings College Hospital to undertake the course. She was completely sane and competent and she declined. She did that in the full knowledge of the consequences because she did not think it was worth it, are you saying that she did not do that in her best interests? Is that the submission that was made earlier? Certainly Lord Habgood mentioned it.

  Dr Watt: I think the Act was talking about the fact that best interests had to be given due weight. It is not that you always have to do what is in someone's clinical best interest, moreover sometimes the treatment would actually be burdensome. All we are asking is that clinical best interests be basically acknowledged so that when someone is trying to make somebody die by denying them treatment that that should be a criminal offence, and that they give them due weight. We are not saying that clinical best interests is negligible.

  Q414  Jim Dowd: I do not share that. I am convinced, because we discussed it at the time, that she made that decision in her own best interests. You are trying to say there is another best interest that should have applied in making that decision.

  Dr Watt: None of us are saying that decisions about something like chemotherapy, which is not suicidally motivated, made by a competent person should not hold. It is a different scenario if the patient is suicidally motivated and if they are refusing something in advance without being given the opportunity of being given information on that treatment which a competent person had and if they are refusing basic help, if they are refusing advanced pain relief and feeding, even by a tube, we would see that as different from refusing something with full medical knowledge and without a suicidal intervention.

  Dr Treloar: I think it is undoubtedly the case that in the best interests of your mother in her judgment meant that she should not have treatment. There is no question that it is clinically right or in the clinical best interest at time you withhold treatment like that, I do not think any of us have a problem with that. If I might give you a slightly different example of a gentlemen I looked after three years ago with severe dementia, he was very distressed, very agitated, very confused, dreadfully incapacitated and one would imagine, although he did not know this, that had he written an advance directive he would have said "I only want treatment to alleviate my mental condition and my distress", indeed that is what his son said to us. He said, "no medical treatment, treatment of a mental health nature to alleviate my father's distress, that is what I want". The point about good clinical care is that in that circumstance the reason he was like that was because he had a heart rhythm disturbance. I had to go back and talk to the son, who we gave, in effect, powers of attorney, to say, "we want to treat this person with cardiac medicine, simple oral medicine". Interestingly he was just flying out of the United Kingdom, he was going through passport control so if I had rung him fifteen minutes later he would have been on a plane and I could not have spoken to then. In this case where it was clear we had been giving good medical clinical care which led to the improvement and the alleviation of that person's symptoms which could not have been achieved otherwise. In best interests there really should be consideration of what is good care and what will help. The second and third are when we get into these complicated decisions, when we get into things like advance directives of course it is terribly helpful, as Baroness Finlay said, if draft directives give you guidance and it be can helpful. If they prevented me from treating that person as I think under current legislation they would the effect of that would not have been a problem for me but it would have been that the patient who would have suffered. I come across a lot of examples in my work with severely demented people in the later stages of dementia where those kind of things occur. Happily we negotiated with the son and explained it to him and he said, "of course, please, go ahead". I would have to say that in our work with attorneys, particularly under the enduring powers of attorney which we currently have you know, as we do, that ten to fifteen per cent of those are subject to fraud. I can tell you as a clinician it is extraordinary difficult to get that sorted out when a decision-maker is not acting in the interests of a person, it is very difficult, you can sometimes manage it if they turnout to be bankrupt, beyond that it is very, very difficult. I think therefore with these decision making mechanisms we need very good safeguards and we need the ability to negotiate. As has been said repeatedly this afternoon, I know, advance directives which are absolutely binding would be disastrous for patients; we need to be able to negotiate around them.

  Chairman: We have a problem of time because we should finish at 6 o'clock or soon after. What I would suggest is that Questions 4 to 7 deal with decision making and I think you could answer those in writing, because I am anxious to have your views on Questions 8 to 12 which are about advance decisions to refuse treatment which I know you wish to talk to us about.

  Q415  Baroness McIntosh of Hudnall: There are two questions relating to advance decisions which I would like to ask. Firstly, whether advance refusals if they are built into statute, in your view, risk the welfare of patients, and I think you have already given us some indication of your views about that. If so, can you suggest how the draft Bill might be amended to avoid this? Can you also tell us whether you believe advance directives should be given in writing?

  Lord Habgood: I see the Bill talks about advance decisions, whereas most of the members of the Committee have talked about advance directions which indeed was the phrase used by the original House of Lords Committee. I think it is a better phrase because "decisions" seems to imply, "This is the last stage of the process. You make your decision and that is it." A directive is a piece of advice given in circumstances which no doubt are quite different from those when it actually comes into effect, and that forms general advice as part of that material which the clinical team uses to make its decisions about the suitability of treatment. That seems to be the proper function of a directive. If it was made legally binding, it would take away from the clinical team the power of final decision and almost certainly result in patient harm. It seems to me important also that the advance directive should be in writing. It need not necessarily be in a very strict legal form, it is simply an expression of a wish.

  Q416  Baroness McIntosh of Hudnall: Since the language of the Bill currently does refer to advance decisions, can I take it then that you would recommend the language of the Bill be changed to refer to "directive", which would in your view have the effect of removing the absolute quality of that statement made in advance?

  Lord Habgood: I would prefer directive because a directive is simply an instruction, it is not a final decision.

  Dr Howard: I would agree with that. I think they should be advisory rather than mandatory and I do not think we should freeze somebody's views in time. I have given the example of the suicide note which would be a very common problem. In reaching a decision, very often with regard to difficult decisions, it is a process over time rather than an event. Yet hered we are almost treating a decision by a patient as something which is absolutely fixed. It is only fixed if the patient dies, they have the treatment or they become incapacitated. Very often patients will decide but will wish to discuss decisions and may even change their views many times over. In ordinary clinical practice, if for example you are going into hospital for a hip replacement, the surgeon is going to be very keen to make sure your consent is up-to-date. There is an argument to discuss the operation with the patient in out-patients. But that may be months beforehand, so always get contemporaneous consent.

  Q417  Baroness McIntosh of Hudnall: But in people who lack capacity, by definition, that is not going to be possible.

  Dr Howard: No, but the decision could be made months or even years in advance. I had a patient who, curiously enough, I had known before, who had made an advance decision unbeknown to me. it was actually stuck in his notes to the effect that if he became incapacitated and confused and was suffering from a terminal illness he would not want to be treated. I treated him, not knowing he had made that. His wife said I should not have treated him. It was clear he had quite advanced lung cancer but when I had treated him I asked him, "Did I do the right thing?" He said yes. What was curious in that case was when I came to talk to him about his lung cancer, it was quite clear both from what he said and from what his wife said, he had not really faced up to the possibility of his developing a malignant disease at all. In other words, he was just like any other patient. That decision was made—and his wife made an advance decision as well not to be treated under similar circumstances—I think as a result of a television programme when both of them were fit and well. They both decided hypothetically—in practice it was hypothetical—this is what they would want. But when it actually came to facing up to the reality of having lung cancer, he and his wife were just as anybody else. They had not really thought about the actual implications. They had not understood what it would mean to have a terminal illness.

  Dr Craig: Can I give two examples very quickly?

  Q418  Mr Burstow: Can I ask my question and then it might be usefully illustrated by the examples about to be given. It is really to try and understand the nature of the concern and whether or not in fact on reading of the draft Bill the concern is being answered. In Clause 24(4) it lists (a) through (c) a series of circumstances in which the advance decision is not applicable. My reading of that, and I am not a lawyer, would suggest in almost all circumstances unless the person has had the ability to act as a time machine and go to the future and take detailed notes of every aspect of the circumstances surrounding their loss of capacity and the condition they are in, that an advance statement is not likely to be valid or, if not, entirely valid, and therefore is a material factor in the decision making process which would not be binding in that situation. I wonder if the witnesses we have here have looked at this and why, having considered it, you still come with the views you have been putting to us so far about this particular drafting of the Bill?

  Dr Howard: Because they can be expressed in very broad terms and they may appear to be rather specific. For example, if I can give you another case, I think it was an American one. A gentleman stated that in the event of his becoming incapacitated and suffering a cardiac arrest, he would not want CPR (cardiopulmonary resuscitation). He had an inguinal hernia repair under general anaesthetic, he suffered a cardiac arrest. Question: should he be resuscitated?

  Q419  Mr Burstow: Then (4)(c) under Clause 24 says, "An advance decision is not applicable to the treatment in question if circumstances exist which were not anticipated by P at the time of the advance decision and which would have affected his decision had he anticipated them." Surely that scenario is directly addressed by that drafting?

  Dr Howard: No, because it was a very broad one. He was incapacitated by virtue of being under anaesthetic and he had suffered a cardiac arrest. We, of course, in this country would resuscitate him immediately. But there is always a risk that he may suffer anoxic brain damage and therefore he was not resuscitated.

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