Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

Examination of Witnesses (Questions 60-79)



  Q60  Stephen Hesford: To save time it was the global balance issue. For my part I could not see that you could split it up, so it is the whole thing really.

  Dr Lyons: You can split it up. Personally I would not want to work under this Bill. If this became an Act I would not want to work under it; I would have grave reservations about it.

  Q61  Stephen Hesford: As a practitioner?

  Dr Lyons: But I do like the definition of "incapacity" in the Act with the provisos that I have laid down.

  Q62  Chairman: Your colleagues agree?

  Dr Bowden: Yes, on the Act as a whole as it stands I very much prefer the Scottish version. I think there are particular issues around general authority to treat. In terms of the specific aspect of definition it does come down to the detail about how that is operated in practice.

  Q63  Lord Rix: I am coming from Mencap's point of view. We find that the title of the Bill and to a certain extent the Scottish Bill is slightly demeaning and slightly threatening. "Incapacity" indicates something whereas capacity is more positive. I notice in Canada in the equivalent Bill, which comes back to what you were saying just now, is called Substitute Decision and Advocacy Act, which is what you were saying a moment ago. I find—and I know this is Mencap's view, but it is my personal view as well—the use of the word "mental" and " incapacity" has a threatening tone to it and covers a whole belief in the Bill. You are looking always on the negative side right throughout whereas if it is a more positive title you can have a more positive and friendly view of the Bill.

  Professor McMillan: It is not clear to me there is an advantage in having the word "mental" in the title of this Act.

  Dr Lyons: I agree.

  Dr Bowden: Yes.

  Dr Lyons: Yes, and I like the "Substitute Decision Bill". It is an excellent idea.

  Q64  Huw Irranca-Davies: To return to 2(1) and the definition of "mental incapacity" your comments contrasted this aspect of the Code of Practice, and your position is that you feel quite content working what is laid down here with your provisos. In the way that legislation is drafted do you feel there is any suitable combination that would refer to Codes of Practice that could flesh out and add more detail and so on. Do you feel that this should be on the face of our Bill?

  Dr Bowden: I think one example might be in terms of the use of the term "unless all practicable steps have been taken." What in fact does that mean? For a GP who has perhaps seven minutes to see an individual, what practicable steps has that GP to take in order to make a decision about capacity? Under the Scottish Act that GP should be ensuring that he or she is communicating well with the individual, that he is taking the wishes of the individual into account, that he is consulting with relevant others including the family and other carers who may be involved with that individual. How far that actually operates in practice is unclear. Our suspicion would be that some GPs, or indeed other medical practitioners, do so very thoroughly following all of the principles of the Act. Other GPs will take the view that it is not reasonable or practicable (which is the term in the Scottish Act) for them to spend all of that time to do it. They know their patients and will say, "I have made my decision under the principles of the Act", whereas I, as someone involved in supporting that individual, would argue to the contrary, so detail about what "practicable" means in the Code of Practice would be of great benefit.

  Q65  Huw Irranca-Davies: On the face of the Bill?

  Dr Bowden: I think Codes of Practice would probably be where it would sit better.

  Dr Lyons: In all the Codes of Practice it has got a very clear step-by-step guide as to the best ways and the best environments to assess somebody's capacity—making sure we do it in an environment familiar with the person, supportive for them, comfortable for them and in a way that is best for them.

The Committee suspended for a division.

  Chairman: I am informed that we are quorate. Jill?

  Q66  Baroness Knight of Collingtree: I am going to try and roll a few questions up. I think the first one I want to ask is in what ways would the inclusion or perhaps a more explicit emphasis of these general principles in our draft Bill actually assist practitioners working with people with incapacity? We have heard a good deal which has helped us very much on this particular principle, but I thought I should give you the opportunity to answer that question. I want to go on to say could you tell us the relative merits of the concept of "benefit" and "best interests" in this particular context. Is the proposed "best interest" check-list likely to be useful to clinicians working with people with incapacity? Would it, for instance, enable a balance to be struck between supporting the autonomy of the person with incapacity and providing them with protection? Finally I would like to say I was rather alarmed to hear Dr Lyons say that if a person was not consistent then he was incapable.

  Dr Bowden: Touché.

  Q67  Baroness Knight of Collingtree: I must admit that rather alarmed me. In the sphere of what we are talking about I was particularly thinking of someone who had one of those mental illnesses which they come and if the person takes their medication they go, so that you could be inconsistent at one moment and fairly consistent the next. I was a little bit concerned about that. I am sorry to have rolled all those up but there they are.

  Dr Lyons: Can I take that last point firstly. I said that was in relation to a very specific instance given where somebody makes the decision and then given the same information says, "No, I do not want that at all." If that is done within a very short space of time you have doubts about that person's capacity. Somebody's capacity may fluctuate, somebody may be incapable for a short time. That is a very important point to make—the capacity can either be temporary or permanent. There may be instances where you have to temporarily intervene to help somebody when they are incapable for a short period of time until they regain capacity, and then they are capable.

  Q68  Baroness Knight of Collingtree: So there can be a time limit on incapacity?

  Dr Lyons: Absolutely, absolutely, yes. It is not an all and nothing, it is not start and then continue. You only intervene using the Scottish Act for example for as long as that person is incapable and when that person retains capacity the Act no longer applies to them.

  Q69  Baroness Knight of Collingtree: Do you think that would also apply to our draft Bill?

  Dr Lyons: It might be worth making it a little bit clearer in the draft Bill that the capacity can either be temporary or permanent. Not having the Scottish Act in front of me I cannot remember but I think the Scottish Act says that; the Codes of Practice definitely do. If I come back to the other question you rolled up and particularly if I compare the best interests test within the draft Bill with the five principles in the Scottish Act, the very first thing the Scottish Act says is that there shall be no intervention in the affairs of an adult with incapacity unless that intervention will benefit the adult. That is the very first thing the Act says and that really sets the tone for the whole Act. I do not see that tone in this Bill.

  Q70  Baroness Knight of Collingtree: The trouble with that is that people's opinion of what is beneficial for a certain person can vary greatly.

  Dr Lyons: And I would argue that the benefit has to be evidence based. You have to be able to say at the outset, "Is what I am going to do likely to be of benefit to this person?" What is the evidence for that? I say that particularly with regard to medical treatment because that is my forte. If I can give you an example of that. One of the concerns that you will hear in this Committee is the use of sedative medication in people with dementia in nursing homes. What benefit is that having for that person? One might come along and judge it is in their best interests to be sedated, but where is the evidence base for the benefit of that intervention? And in Scotland that is what you would have to test it against, and that is why I like the idea of "benefit", which I think is a more defined concept than "best interests", which I do not think is defined even in this.

  Q71  Baroness Knight of Collingtree: But might it not be? Certainly there have been instances of this where some doctors have felt it was in a person's best interest to end their life.

  Dr Lyons: I do not think any doctor in this country thinks it is the best interests of somebody to take active steps to end their life, no. We will probably go on to talk about issues to do with advance statements and withdrawing and withholding treatment. I want to say one thing on what Mr Ward said, for every one Tony Bland case, for every one Law Hospital case, there are hundreds of thousands of people with advanced cancer, with advanced dementia, with advanced stroke disease and we have to make decisions on whether or not to intervene day in day out. The Law Hospital case and the Tony Bland case were high profile, but those are not cases that should dominate our thinking in this area.

  Q72  Chairman: Almost all the cases you have just mentioned would have capacity. Is it right that if you have got advanced cancer you still have capacity.

  Dr Lyons: No, in advanced cancer you may have brain secondaries, you may have lost capacity, if you have advanced dementia you may very well have lost capacity.

  Dr Bowden: A person with a learning disability and cancer.

  Q73  Lord Rix: There is a question here which flows on from that. To what extent can scrutiny by research ethics committees provide the necessary safeguards to protect people from exploitation for the purposes of research? I personally do not like the word "research" at all because I think, like "mental incapacity", it has a certain threat behind it, so I would rather they found some other word, like "treatment".

  Dr Lyons: May I outline first of all what the Scottish Act says about research and my colleagues may like to come in, as I am not a researcher by trade. The Scottish Act does permit research involving people with incapacity under certain restrictions. It must be research into the care, treatment, causes, et cetera, of the incapacity itself. It must be research that cannot be performed in people who are capable. It says in the Act that the research must be likely to be of real and direct benefit to the adult. We all know that if what we were going to do was going to be of real and direct benefit, we would be doing it, we would not be researching it. That is not what research is about. The Act has to say that because of the general principle in the Scottish Act about benefit. Then it gives you a clause which says if it is not going to benefit the adult it must be likely, through greater understanding of the condition, to provide real and direct benefit to others who suffer incapacity. It is then up to the research ethics committee to decide what that link might be. Then it must involve no or minimal foreseeable risk or discomfort and must have a consent from a proxy with authority to give consent, or failing that the nearest relative, and that has caused some difficulty in undertaking research where there may not be a nearest relative or where the research may be into actions involving the nearest relative, perhaps even allegations of potential abuse where the nearest relative is not the appropriate person to get consent from. That has been highlighted as an issue for the Scottish Act. Maybe colleagues with research backgrounds might like to add to that.

  Professor McMillan: I agree with what you say. The other category that I would mention is of course acute cases which may be presenting at accident and emergency where of course you cannot get consent, but where we do want to improve care and treatment. We want to understand about symptom persistence and psychological issues in these cases. At the present time it is quite difficult to do research in that category of case, although I note there is a comment in the draft Bill about the case.

  Dr Bowden: One further point on it. The Scottish Act as it stands, however, can act as a disincentive to local research which may be small pilot projects that would lead to a more established research programme because of the fact that that then has to go to the national ethics committee for approval. It can discourage the low level of research and we need to be careful about that.

  Q74  Laura Moffatt: Gentlemen, I need to return to the issue of benefit. You heard the question that I asked previous witnesses but of course I cannot ask that because you have not got withdrawal of treatment as part of the Scottish Act so therefore my question is going to change. Firstly, as practitioners are you glad about that? Are you glad that you do not have to include that decision-making as part of the Act? Secondly, I was so pleased to hear you say, Dr Lyons, that you should not really concentrate on the high profile cases because as a nurse for 25 years I know very many more decisions are having to be made that are not high profile and it is going on from day-to-day and it is quite difficult. Could you first of all tell me if there are any advantages to decoupling that issue? When you see the weight of evidence that has come to the Committee on that particular subject then I am beginning to see it too, to be honest.

  Dr Lyons: I absolutely understand the anxieties people have about this whole question of withdrawing or withholding life saving treatment. I have a couple of things to say about that. First of all, can I be clear with the Committee that in the eyes of the Ethical Department of the British Medical Association there is no difference legally and ethically between withdrawing treatment and withholding treatment in the first place. I know it might look different and it feels different when you are doing it, but the end result in either case is the person is going to die.

  Q75  Laura Moffatt: Is that a benefit though?

  Dr Lyons: Mr Ward said—and I completely agree with him—is it the intervention you have to decide on, not the non-intervention, okay, so if I am in a situation where a person has lost the ability to eat and drink and lost the ability to swallow, has an advanced illness, an advanced degree of dementia, I have to make a decision as to whether it is going to benefit that person to intervene. That is the decision I have to make. I do not decide is it going to benefit them if I do not intervene, I say is it going to benefit them if I intervene. That is the test. That is where it goes back to the evidence because the evidence base in the population that I deal with is that if you do try and intervene a) it does not benefit and b) using an artificial feeding apparatus causes distress to the person, it is uncomfortable for them, and does not prolong that person's life. That is the evidence and that is what I mean by evidence of benefit.

  Q76  Laura Moffatt: I hear absolutely what you say but you have almost persuaded me that "best interest" is the best wording here then.

  Dr Lyons: I disagree. I think the evidence-based test of benefit is the best way to look at it.

  Professor McMillan: Could I just raise a little bit of a flag for the high profile cases not because they are high profile but because the category of case that we are talking about here. In the Law Hospital case and Tony Bland case we are talking about people with severe physical incapacity and in those cases extremely severe mental incapacity. I would like to emphasise some of the points Mr Ward made. There is an important issue in terms of having robust assessment where there is any doubt whatsoever that the person is unable to communicate and where essentially you may have somebody who is locked in but who has been adequately assessed, and it may be felt that the decision is that feeding intervention should be withdrawn. I want to raise a little flag for those cases where there is a communication difficulty and serious physical handicap.

  Q77  Baroness Fookes: I cannot myself see the difference between "best interest" and "benefit" taken at face value. Is the problem for you that "benefit" is a more modern term in relation to the legislation and "best interest" carries, what shall we say, a history, it carries baggage?

  Professor McMillan: Can I make a comment here. I liked Mr Ward's hierarchy where he had best interest at the bottom because the other steps you go through are evidence based and I think that is the crucial element. You are looking at evidence and by the time you get to best interest you are more concerned with opinion.

  Q78  Baroness Fookes: But why should you not look at evidence or tie it in with best interest?

  Professor McMillan: It may be an issue to do with semantics which I think somebody raised earlier on, but with benefit you are looking at something which you assume is going to improve the lot of the person and there is specific evidence for that.

  Q79  Baroness McIntosh of Hudnall: Can I just pin this one down because this is a really tricky bit of ethical unpacking that we are doing here. I think, Dr Lyons, you said earlier on that there would be no doctor in this country—and I am not quoting you but this is what I heard—who would see being dead as a benefit or dying as a benefit.

  Dr Lyons: I think you are misquoting me.

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