Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

Examination of Witnesses (Questions 243-259)


8 OCTOBER 2003

  Q243  Chairman: I would like to start by thanking you for attending and for your written evidence, which has been very helpful. The session, as you realise, is open to the public and is being recorded for broadcasting and there will be a verbatim transcript which will be published with the report, and you will have a chance to check that for accuracy and return it quickly. There should be a note of the relevant interests of the Members of the Committee on the table. The representatives of the departmental team are present as observers. Even though we have microphones the acoustics in this room are not good, so if you could speak up that would be helpful. If we are unable to reach any questions we would be happy if you would write to us on those and, also, follow up any points which were made in the evidence which you might want to expand on the final point, which I make to all witnesses, is that we are not here to devise a White Paper on mental incapacity. We are here to comment on a draft Bill and, therefore, the questions are not structured round the structure of the Bill. If you would like to introduce yourselves.

  Dr Wilks: My name is Dr Michael Wilks and I Chair the Medical Ethics Committee of the British Medical Association.

  Dr Nathanson: I am Vivienne Nathanson. I work on  the staff of the BMA where I am Director of   Professional Activities, which includes responsibility for ethics, science, education and other professional matters.

  Q244  Chairman: If I can start by saying that the draft Bill would put into statute a number of principles which are already encompassed by common law. It would also establish a number of new systems relating to substitute decision making. In your view does the draft Bill go far enough to clarify and improve the decision-making process for professionals, families and carers of those who are currently unable to make decisions for themselves?

  Dr Wilks: Thank you. Generally speaking we certainly think that it does. I think the overriding point for us as a starting point is that there is a significant vacuum in the middle at the moment in the decision-making process in health care. Obviously that is reflected in other areas of difficulty for incapacitated people in making decisions for themselves about other issues, but from the British Medical Association's perspective it is in health care decision-making that we have a particular interest. The problem is that in terms of deciding what is either of benefit of best interest in a particular case, where a patient is incapacitated it has to be done by reference to family members but, ultimately, the clinical decision is with the doctors, so there is a process of clinical assessment followed by some kind of discussion with family members as to what is in the patient's best interest in order to benefit the patient. As I said, that has been a vacuum and it is, therefore, extremely good, in our view, for patients that this kind of framework will now exist, and particularly it is good for doctors as well because we are left with a decision-making process in which there has been some uncertainty, and to have a process in which people make statements about themselves either verbally to the family and have discussions with family and, maybe, even write advance statements or advance refusals so that everybody is thinking a bit about the type of health care decisions they would like made on their behalf when they become incapacitated can only be good for the process of health care decision-making. So we do welcome and have pressed for some time for this type of legislation.

  Q245  Chairman: You mentioned the uncertainties that you have in a particular situation. What would those be?

  Dr Wilks: Obviously there are two stages in dealing with any patient with an incapacity. The first is to make a clinical assessment and arrive at a judgment as to what will be clinically in the best interests of the patient. However, medicine has moved very rapidly towards the idea that whether we talk about benefit or whether we talk about best interests, we talk about something that is from the patient's perspective. Just because a doctor thinks something is of clinical benefit does not mean that it is in the best interests of the patient from their perspective. So the difficulty is that when someone is incapacitated you simply cannot talk to that patient. You may be able to get some idea of some decisions that their level of capacity will allow them to make but in health care terms these are often very difficult decisions and the only way to reach a best interest judgment is to go through the people closest to the patient. So because this Bill also makes it clear that advance statements of general wishes and, particularly, advance refusals of treatment on the face of the Bill are things that we would like to encourage patients at least to think about, there is far more information available to the doctor at the time as to what that patient would wish as opposed to what the family or simply the doctors think the patient would wish. That is very helpful.

  Q246  Mrs Browning: I wonder, Dr Wilks, if I could just ask you to reconsider the order in which you suggested this process should follow? I think you told us "clinical assessment followed by family members". I can think of examples where actually doctors would be better informed of the clinical assessment if they consulted with family members first. Let me give you two examples: if you are dealing with somebody who has an autistic spectrum disorder they could have quite a variation in behaviour and communication problems and it would actually help a doctor making an assessment if they got a few pointers from the family or named carer first in order to know how to approach that person and how to phrase questions—what sort of behaviour to expect at the assessment. So could I ask you to consider reversing that? Finally, Chairman, on quite a different issue in terms of the possibility or ability to communicate, my own mother is in hospital at the moment, at 86 with Parkinson's, having suffered a fractured femur and just about everybody who has looked at her has assumed that because she has no upper body strength because of the Parkinson's that she cannot walk, and that is now informing the way in which they are going about rehabilitation. They clearly have not asked her, and she has not volunteered the information, but she could walk before she went into hospital with the fracture. Had they asked a member of the family before they started rehab it would actually have informed the rehabilitation process. So, again, it is a question of the order in which that process is carried out.

  Dr Wilks: Yes. Let us deal with the last point first, Mrs Browning. One of the things that we are very concerned about and support very, very strongly—and one of the concepts of the Bill—is this presumption that people can make decisions for themselves; somebody has to demonstrate that they cannot before they are regarded as lacking the capacity. It is also, as a subset of that, very important to recognise that people can make some decisions about some things, depending on their level of capacity, and not necessarily about other serious matters. So we are very keen that doctors and health care professionals should find ways to communicate with people to get their wishes out on the table so that we actually know the pathogenologies they have. Often that process of communication can be quite complex because the problems of the medical condition may make it difficult to for them to speak. We have technology and all sorts of ways of doing that. On your first point, I did not sort of put a hierarchy of decision making as absolute. Many, many patients in these situations will be dealt with in a continuity of care scenario where doctors know them very well, nurses know well and the GP and family know them very well. However, where some kind of new medical problem arises in someone with a level of incapacity it makes it difficult for them to make decisions for themselves. The first job of the doctor is to be a doctor and make a clinical judgment as to what might be best, but that is only a first step; it is the wishes of the patient, as far as they can be ascertained, that decides what will then happen.

  Dr Nathanson: If I can just add to that, we would always say, on the education side, and it is very strongly made, that the process of coming to that diagnosis is a process of talking to the patient and anyone else who has information which helps you about what the patient perceives to be the problem, because that is where you should be starting. There is no point in a doctor making a diagnosis of something, however interesting it is, if it is actually irrelevant to what the patient presented with and what the patient believes they need treatment for. That is the first thing that you are trying to work out. Sometimes the two things relate, but not always.

  Chairman: I would like to move on to an area where we would appreciate your advice, which is in the area of medical research, which is not in the Bill.

  Q247  Jim Dowd: The Scottish equivalent, the Scottish Act, does contain specific reference to research. This draft, at the moment, does not. Who has got that right?

  Dr Nathanson: I think this is an extremely difficult one, but we would see it as almost denying patients the possibility of a real benefit if they do not have the possibility of participating in research. That then has to be extremely carefully constructed in a way that ensures that there is no possibility that individuals can be victimised or experimented on or exploited in any way, but providing one tries to build a structure to avoid that, and I think it is possible to make such a structure, then I think there are real benefits. There are simple benefits in research. The very process of being the subject of research often brings extra attention, so somebody who, perhaps, is in a long-stay facility may get considerable extra attention and sometimes the very fact of that attention can either make a medical difference or just make a social difference to that individual. Of course, there are the key issues that if you are going to look at some of the conditions that lead to people being incapacitated, the question is whether you will be able to really make leaps forward if you are not able to involve people with those medical conditions in the research. So we would believe that it should be in the Bill and we would encourage you to look at that.

  Q248  Jim Dowd: I noticed you nodding enthusiastically.

  Dr Wilks: Yes, absolutely.

  Q249  Jim Dowd: How do you guard against possible exploitation or abuse of people with things such as Alzheimer's?

  Dr Nathanson: I think you have to build up a process. We would see the process as probably being based upon research ethics committees looking at protocols, fully understanding (I think our research ethics committee process is getting better in the UK) that one part of their remit is to make sure that individuals who cannot necessarily talk for themselves or express their concerns—that it is their benefit and it is protecting them from exploitation that is being looked at. That is a key element of looking at a research protocol. Clearly, that also would mean that, for example, one would expect there to be limits on the kinds of potential risk for the procedures that you might put people through. One can foresee, for example, trying new medication—where there has been considerable research already on that medication—trying new treatment methodologies of different sorts, physical therapies of different sorts and so on, may well be things that can be tried because there is a reasonable body of knowledge of the effect on people without that condition and because the risk to the individual is properly limited. Those are the kinds of things which medical ethics committees would allow. We believe very strongly that research ethics committees should have this and the right to review to make sure, as research is going on, that they are able to go and say "Well, is it carried out according to the remit that was in the protocol?"

  Q250  Baroness McIntosh of Hudnall: Can I ask a supplementary in relation to that particular issue? What happens now? How is research that relates to the treatment of individuals who suffer from incapacity conducted now? In what way would you expect the research environment to improve if the legislation that is being contemplated now included research specifically?

  Dr Nathanson: I think research in these circumstances will be carried out in very much the way that we would perceive that it should be under the new legislation but with the caveat that I think there are grave doubts as to whether in fact it is legitimate always to carry out that research. There is quite a lot of limitation on research that is carried out on people who are incapacitated because people are unclear whether anyone can give consent to their involvement in research, but nevertheless a small amount of research does get carried out with very careful review by research ethics committees. What I think this would give is clarity about the fact that somebody can give agreement to research on incapacitated people. It would give the ability for people to say "This is the research we want to do" to be clear about what the rules were, what the limits were around it, and I think it would actually stimulate research in an area of medicine which is probably significantly under-invested in research terms, considering the numbers of people who are in some of the groups who are incapacitated and who may not get, therefore, all the benefits.

  Q251  Baroness McIntosh of Hudnall: Are you saying, just to be clear, that some part of that problem of under-investment relates to people's insecurity about whether the research is legitimate in the first place?

  Dr Nathanson: Absolutely.

  Q252  Jim Dowd: Is the current structure of ethics committees strong enough, given the fact that this is essentially professionals deciding what is good for the rest of us, to secure the difference between seeking research and information which might be of great benefit to others further down the line and protecting the interests of the individual as a patient who still needs treatment and has not necessarily agreed to be researched upon?

  Dr Nathanson: Over the last 20 years there has been a very significant and increasing investment in recruiting people to research ethics committee and training. I think what is very encouraging is that most of those are not just doctors, nurses and health care professionals; they involve members of the local community. I think many of them started off with hospital chaplaincy, for example, coming on board and other local members of public. That is a very important element because, in a sense, it gives all of us confidence that it is not just a desire to discover new science, it is actually about trying to weigh up and balance the benefits to individuals. I think, as well, having met a number of these people and having spent quite a lot of time talking to them about research ethics frameworks and guidelines, such as the declaration of Helsinki, there is really a pretty substantial body of knowledge out there that the requirement that they fulfil is to have at the centre of their considerations the safety of the individuals taking part in the research; that they are meant to be and encouraged to be critical in all the right senses—critical in nit-picking at times if necessary—but also to have a mixture of both broad overview of how research fits in with the way in which patients are treated within hospital and their movement within the medical and other allied services but, also, how it fits into the way in which we, as the public, in a different sense, see the role of research. I am very encouraged by the sort of people I meet who are on research ethics committees and their huge commitment to actually serving the public good and helping researchers to shape the research in such a way that it not only gets the medical side right but it does that in a context of keeping the right protections for individual patients and actually gets the answers that we all need, as the public and the health service.

  Q253  Jim Dowd: You speak, almost, of organic development, responsiveness and sensitivity of ethics committees. That would be very difficult to write into legislation, would it not? You would need to just rely on your good intentions.

  Dr Nathanson: Yes, but there is now a research governance framework which I think is sufficiently robust to be reflected in legislation, and we do have a national framework—we have CORAC in England and Wales and the equivalent in Scotland—which is pretty robust and pretty well described in ways that means that you could write them into legislation.

  Q254  Jim Dowd: Finally, is there a need for a formal substitute decision-making procedure whenever an incapacitated person needs to be involved in research?

  Dr Nathanson: I think that the research ethics committees at their best would act as the substitute decision-maker on behalf of the individual patient. The difficulty with saying that otherwise it has to be some separate system is that I think you then start to, in fact, in a sense, almost diminish the ability to look at something protecting the individual patient, because looking at research is quite a complex business of balancing benefits and risks. So I think the research ethics committees are the best substitute decision-makers on behalf of the individual patient. Also, of course, you should also write into your protocols that anyone who has ever said "Under no circumstances would I take part in any research"—of course you would always honour that.

  Q255  Jim Dowd: So your answer is, essentially, no, if we get the rest of it right that would not be necessary.

  Dr Nathanson: Yes.

  Q256  Mrs Humble: The issue that actually underpins the whole of the legislation is the assessment of capacity. As I am sure you are aware, the draft Bill does not actually make any specific reference to the processes of assessment, so my question to you is should the Bill specify how or by whom an assessment of capacity should be made, especially in respect of individuals who do not consent to be assessed? Should this be on the face of the Bill itself or should it be left to the Code of Practice?

  Dr Wilks: I think, on balance, it is best that it should be in the Code of Practice. You may be aware of guidelines issued by the British Medical Association and the Royal Society on the assessment of capacity. We have a second edition of that due for publication in March next year. Were you to find that a useful guide to the actual process I think that we would welcome reference to that in the Code of Practice. I think that would be a better thing to do than put it on the face of the Bill. On the specific point about the refusal to be assessed, obviously that creates a dilemma. The guidance does go into that and makes it clear that it is possible in the absence of consent to make some kind of assessment of capacity, although obviously that is not as complete as if you had the co-operation of the patient. It may be adequate to make some judgment about someone's level of capacity and to move on to make some decision about how that should be managed. The problem is that in the absence of consent you cannot really document and pass on information except under exceptional circumstances. So we do deal with that, but I think that it is possible sensitively, in most patients' cases, even in the initial presence of refusal, to work through that and to get an assessment done.

  Q257  Mrs Humble: Could you clarify for the benefit of the Committee who in your Code of Practice does this assessment? Is it a clinical Code of Practice? Is it doctors who do the assessment? As I am sure you are aware, there has been some discussion about whether lawyers should be involved and whether it should be a legal assessment or a medical assessment.

  Dr Wilks: Obviously our terms of reference are relevant to health care and the capacity to give consent to health care, but we have written this guidance jointly with the Law Society and there will be many circumstances where lawyers will take a view on the capacity of people to make decisions about their financial affairs or their housing affairs but not necessarily relating to medical treatment and may not require a medical type of assessment in order for other professionals dealing with people's affairs to feel they need that medical input, but we would obviously say that where important health care decisions need to be made you have to go through a very careful medical assessment because there are so many different types of mental incapacity which fluctuate and vary and, as I said, they will vary according to the level of decision-making that is being required.

  Dr Nathanson: Just to reinforce that, in a sense what we are really saying is that the person who should be assessing is the person who understands what the decision is that has to be made, because they understand the complexity of the decision. So, as Michael said, if it is about financial affairs or legal affairs it seems that it would not be a doctor, who may have no understanding of the complexity of that decision. So it is somebody who can understand what that decision means for that individual, again, based upon the fact that we should always assume that people are capable until proven otherwise, as it were.

  Q258  Stephen Hesford: Dr Wilks, earlier you stressed the primacy of the idea of a presumption against total incapacity. At the moment that is in Clause 3. Would you like to see that primacy put, say, in Clause 1 or somewhere stated more obviously?

  Dr Wilks: I think that what we would certainly like to be stressed is that primacy. There has been some question about whether there should be some sort of statement of principle at the beginning of the Bill or not, and certainly we think the Scottish legislation benefits from having that statement of principle. We have not encountered any difficulty with our colleagues in Scotland with the fact that that creates any kind of block or in any way restrains the clauses that follow the statement of principle. Yes, I do think that the presumption that somebody is capable of making decisions until you can prove otherwise is so important because, as Mrs Browning asked earlier, so many people around someone with incapacity make assumptions that incapacity equals total incapacity. We want to stress the point that many people can make a lot of decisions about themselves without any help from doctors and relatives, and that should be respected.

  Q259  Chairman: Can you envisage a situation where somebody has the capacity to reach a decision but it is a fluctuating capacity, such as in dementia, and when you come to implement that decision they have a complete reversal of that decision and say "We do not want to do this, it is all wrong"? What do you do in that circumstance?

  Dr Wilks: I think the answer would be in two parts, Chairman. The first is to have more information from that person when they have capacity and when they are competent to express general opinions. That is why although there may be difficulties around advance statements, whether general or specific, in terms of refusal, they are to be welcomed as expressions of wishes by people who have thought it through, and talked to their families at times when they have full capacity about how they would wish to be treated or, perhaps, not treated when they lose their capacity. Obviously at the time when someone has got a fluctuating capacity that will depend very much on the clinical reason for that and how treatable that was, and building up the experience of how that person was expressing their wishes at times when they were rather more lucid. Obviously, people with fluctuating capacity may have to recognise as having some times when they cannot make a proper assessment for their own best interests and that at those times proxy decision making will be made on their behalf.

  Dr Nathanson: Just to add to that, the fact is that in medical decision-making patients with what you might call full capacity change their minds from time to time and it is one of the things that we have to recognise. Perhaps the key thing for the clinician then is to try and talk through with the patient what it is that is making them express what is obviously concern—if you are not certain whether you want a particular treatment or not—and to try and get to the bottom of what it is: what the patient's fears and expectations and hopes are. It is exactly the same with somebody with fluctuating capacity, although you have got that extra dimension; it is to really find  out what is underneath that because the complication of a fluctuating capacity is you may not be sure at which point in the decision cycle somebody is capable of making a decision. So it is very important that doctors are aware of the need to avoid only agreeing with a patient's decision when it agrees with what the doctor would like the patient to say.

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