Taken before the Joint Committee on the Draft Mental Incapacity Bill on
Wednesday 8 October 2003
Carter, L (Chairman) Mrs Angela Browning
Rix, L Laura Moffatt
Memorandum submitted by the British Medical Association
Examination of Witnesses
Witnesses: DR MICHAEL WILKS, Chairman, BMA Medical Ethics Committee and DR VIVIENNE NATHANSON, Director of Professional Affairs, British Medical Association, examined.
Q243 Chairman: I would like to start by thanking you for attending and for the 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 presently observers and even though we have microphones the acoustics in this room are not good, so 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. Final point, which I make to all witnesses, which is that we are not here to devise a White Paper on mental incapacity we are here to comment on the 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 to 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.
Q260 Lord Rix: Going on to advance decisions, if they are going to appear at all in the Bill should they be on the face of the Bill and should it stipulate that they be in writing? Should it stipulate that the family have been consulted before the decisions are written down and should they be witnessed by a competent professional - somebody who knows you like your family doctor or your lawyer? Also, as a further supplementary to that, how would you deal with advance decisions which are currently being held by many lawyers up and down the country? My wife, for instance, has left advance decisions. How would you deal with those on the face of the Bill?
Dr Wilks: Quite a few questions there. I think, first of all, it is very important to distinguish between a general advance statement of wishes and the advance refusal. Common law respects and requires doctors to respect a competent refusal of treatment, and you may be aware of cases where doctors have come unstuck by not doing that. Therefore, we welcome the inclusion of advance refusals of treatment on the face of the Bill because it underpins common law requirements already. I think the situation is much more difficult when it comes to more general statements of wishes. It is very hard for us to see how one could reflect the status of a rather flexible process of documentation of expression of wishes - a generalised expression of wishes - on the face of the Bill. Secondly, because they may well reflect a person's wish to be treated by a doctor in a certain way, without sounding defensive about it, it is very difficult for a doctor to be held to give a certain treatment that has to be given at the time when the judgment is made as to what is in the patient's best clinical and other interests. So we have some difficulty with a more general statement being included on the face of the Bill. We do not think that it should be a specific requirement that the advance statement should be in writing. Therefore, if it is not in writing it may be secondary whether it should be witnessed because many of these processes and discussions will be taking place at a time when the person is already hospitalised or in long-term care under the GP or under hospital or community care. Although there may be some written statement from before, what we see is a process of information; consent is a very dynamic and fluid process in which health care professionals get some idea from the patient as they go along treating the condition as to what those wishes might be. That is in the mind of the health care professionals as well as, hopefully, the notes as well. So I think to require a restrictive statement as being the only evidence of a person's wishes and not to rely on other more generalised statements to doctors and what is put on the notes is probably not giving that patient the best opportunity to have all the balances and checks pass through their thinking. We are very concerned, obviously, that if you make an advance statement or advance refusal of treatment you do not just stick it in a drawer and forget about it; people have to know it exists and doctors have to know it exists or family have to know it exists, and we certainly are very supportive of the idea that the importance of that document should be strengthened by there being an offence to conceal or destroy it, as I think is on the face of the Bill.
Q261 Mr Burstow: I really wanted to pick up on this issue of assessment of capacity and the ideal position being one where you can have a conversation with a person when they are more capable of understanding the decision they are being invited to take. Evidence from, I think, the Audit Commission and, also, from the Alzheimer Society does give some cause for concern about diagnosis, in respect of dementia, being quite late in terms of it being reported to carers and family members and then to the individual. Do you think in any way enacting this legislation might lead to a change in practice in terms of an early diagnosis so as to facilitate that sort of discussion?
Dr Nathanson: It is difficult to know whether it will lead to earlier diagnosis. I think there are many things going on that lead to late diagnosis of dementia, including the fact that it is a devastating diagnosis because there is no effective treatment in most circumstances. It is one which doctors, in that sense, are reluctant to make because of the effect it can have on that individual and their ability to live independently - not necessarily their physical ability but just their ability in the sense that people tend to move in and say "You are no longer able to make decisions" because of the diagnosis. It is also, of course, a diagnosis of exclusion very often, so people are always for searching for things that are other causes of whatever the state is, so that hopefully some of it is treated. What the legislation will do, and one of the reasons - just picking up Michael's previous answer - why we are so enthusiastic about this, is that there will be far more discussion, we hope, within families, between individuals and their doctors and other health care workers and individuals and other people who help them in other areas of their life about "What I would want if I cannot make decisions for myself, both medical and other". I think that might have a significant impact in terms of the willingness to make this devastating diagnosis because patients will already have expressed some of the views about the things that they would want to happen to them, whether it is what happens to the family home and those sorts of things, which GPs, in particular, are very aware of being an important issue for many people in these circumstances. So I think that it might encourage it. I think it would also lead to a situation where the family felt more confident of saying "A system is in place to help us make decisions" for whoever it is who may have dementia, and I think that is to be welcomed. Again, the earlier the diagnosis is made, although there is not currently any treatment, does mean the possibility of research and the possibility of new treatments as they come along - and who knows what may happen? Sometimes we are surprised by the speed with which something comes in that can treat so-called untreatable conditions.
Q262 Stephen Hesford: Just to come back to your answer on advance directives. What struck me was when is an advance directive not an advance directive and when is it just simply a contemporary conversation that you are having with a patient? I broke my leg and went into casualty, then I went on to a ward and they asked me did I want a pin or did I want plaster? That was not going to be done immediately. So I agreed with them what I was going to do. Was that an advance directive or a contemporaneous decision? If it is a contemporaneous decision, is that not of a different quality to the issue that we are really grappling with as to what an advance directive should be properly able to do?
Dr Nathanson: I think an advance directive is clearly something which says "In the future if I cannot make a decision" in its traditional sense. A contemporaneous decision is the treatment now or in the near future. I think where we find the soft area in between is that from the conversations you have perhaps, particularly, with your GP, your GP will learn something about the things that are of importance to you, the factors that you bring into play when you make medical decisions. All of us have slightly different values in those terms. For example, I always say to my dentist when I go there "There is only one key factor, as far as I am concerned in dental decision-making, which is get me pain-free as soon as possible". That is important and he knows that. So, in that sense, that is a bit of an advance directive; if I could not make the decision he knows what is the most overriding issue for me. In the same way that is where we find not necessarily specific advance directives which have a lot of detail in them, but the discussions which take place are part of this slightly softer system of giving information to people who, if they have not made a formal advance directive, at least have some more idea of the things that matter to you. Part of that will include who it is in the family, perhaps, who makes decisions on your behalf. It is very important often for an elderly person on their own that the doctor knows which of the family members is most in touch with the way they live their life and things that are important to them. In that sense, that is where you get into this soft area, and we would move towards the advance directive having a mixture of things; there is the element of continuing discussion with the GP from time to time, with some recording of that, so that the GP has a trigger and knows there are things that matter to you which will help. It will help while you can make decisions for yourself as well but it will help the GP to know how to present things to you because they know what are the issues in your decision-making process.
Dr Wilks: We have talked about communication a couple of times, and I think that one of the areas that we see as perhaps a weakness at the moment in health care, and one which I think this Bill will help to promote an answer to, is that while, of course, incapacity is not necessarily age-related we are talking primarily about older patients. Many older patients enter hospital with a lot of difficulty about communicating what they want in the way of their general treatment to doctors. I think, to be fair, some doctors have difficulty engaging in that kind of discussion because very often they will be talking about issues in relation to decision-making that they are uncomfortable to intrude upon. So the fact that doctors will need to have more understanding about patients' wishes because of the incapacity legislation, I think, will make it more important that we, as doctors, engage in those sorts of conversations with a bit more readiness and willingness. I hope it will have a cumulative effect.
Q263 Mrs Humble: If I can just go back to your answers to Lord Rix's questions about whether or not the advance directives should be written down, if they are written down and there is a possibility of having a register and then you, the clinician, could access that register just to know that somebody had made some advance directives about their future care and then you could raise it with them - but then you went on to talk about the fact that advance statements can be part of a conversation that Stephen has been talking about. How would you then know? If that conversation had been with a GP you would not know about that.
Dr Wilks: Not necessarily.
Q264 Mrs Humble: It depends. It may well be that GPs write them down, but unless you have access to detailed records from the GP and can trawl through them, and it may go on for several months even years, you are not going to know. So if it is not written down how will you know, when somebody arrives in hospital and you are having to deal with them, that they have actually made those sorts of statements about their future treatment?
Dr Wilks: Very often in the acute situation that may not be possible. In an acute situation doctors will act in the best interests and do what is best. I think in a more long-term, chronic situation there is time to get that kind of information from the GP and, also, from any written record. Obviously the presence of their written statement is very helpful, but I think there are two different scenarios of advance statements that we need to keep in mind. The first is that even something as tight as an advance refusal of treatment must be relevant to the situation the patient is in. One of the difficulties about making an advance refusal of treatment is that you, first of all, as a patient have got to visualise the circumstances you are going to be in in which you might not wish to have treatment. Secondly, of course, medical technology might over time produce a much greater potential benefit in treating your condition than was clear at the time you made the advance statement, which is why we need to have a dynamic review and a further discussion with the patient. The other scenario would be where the advance statement simply tied the doctor's hands too much, and at the time the patient is having a more rational conversation with other family members further down the line, again, that sort of information about a balance of views needs to be brought in. That is one of the reasons why we go back to the point that a clear advance refusal of treatment is something that common law recognises and which, I think, wisely should be on the face of the Bill. It is much more difficult to see how one addresses the problem of a more general statement of wishes. While obviously doctors would wish to give that treatment which patients would wish to have, they need to consider the clinical benefits and harms at that time. So, yes, helpful to have something in writing, and we would certainly welcome that, but we would also welcome other evidence to help us build up a picture.
Q265 Laura Moffatt: I wonder if we could just pursue this point - it is quite a difficult area - of advance decisions. The BMA have already stated that they would find it very difficult if a patient their doctor was caring for refused basic care - that they would find that extremely difficult to adhere to. Certainly as a nurse of 25 years in the NHS it is something that is absolutely a bar to me (?). That would be about making sure that somebody is clean and comfortable, with a moist mouth. There may be some difference of opinion over being pain-free. What circumstances, firstly, could you see where that would be appropriate and why do you believe that for basic care, if there is a refusal, it should not be taken any notice of?
Dr Wilks: In terms of not taking any notice of an advance refusal of treatment, going back to what I said a little bit earlier, the doctors need to be absolutely clear that it is valid. Does it refer to the situation the patient visualised? If there is any doubt about that the doctor has an obligation to at least review that and say "Well, here is a situation the patient did not envisage". It is either going to be some kind of change in treatment because the advance refusal is quite old and things have moved on, or it could be that a completely unanticipated medical emergency has arisen which is highly treatable, and the doctor can say that is a good idea. Obviously, we do not want to support the idea of competent statements of refusal of treatment and then undermine that by saying "Well, we will not take any notice of it". It would have to be an exceptional circumstance in which we genuinely felt that the person had not anticipated that precise situation. As far as basic care is concerned, we are talking here about basic care; we are talking about the offer of fluids, warmth, comfort, pain relief. I think if we are talking about rights of patients, we are, to some extent, talking about the rights of health care professionals, and they need to be able to treat that kind of level of need. If that refusal in advance has been made to those who care, we think that it would be very, very difficult for doctors to respect that, partly for other health reasons in terms of other people and partly because doctors and nurses simply cannot leave somebody without those basic functions. We would regard that as an unacceptable binding of doctors' freedom to act in someone's best interests, while entirely accepting that refusals of treatment, even to the extent of lack of support of treatment, are covered by common law and should be protected.
Q266 Laura Moffatt: So you are very clear you would like to see stated in the Bill that basic care should never be able to be refused?
Dr Wilks: We think yes, in advance.
Dr Nathanson: In advance.
Q267 Chairman: If it were in the Bill this would require some kind of definition of basic care.
Dr Wilks: We can refer you to a number of definitions. The definition of basic care in the document we produced on advance statements about medical treatments is quite helpful, as also is the one on the withdrawing and withholding of life support treatment.
Q268 Mrs Browning: On that point about the definition that would be there, and I can understand why you want to see it, have you thought through what might be the outcome if you as doctors faced legal challenges either from, say, the relatives in terms of what was done at the time and in respect of the difference between, say, basic care and some other form of interventional treatment? Presumably it is on a scale; it is not either or. Also, whether you would be open to, for example, lobby groups taking test cases through courts in order to define that for the particular group that they represent?
Dr Wilks: Yes, I agree that there could be some fuzziness around the edges but we would hope that in the vast majority of cases it would be quite clear that a doctor or nurse or health care professional acting in that way of providing basic care would be doing so for the immediate comfort of that patient and not to in any way alter the course of disease.
Q269 Jim Dowd: Notwithstanding the heated dispute between basic care and treatment, Stephen mentioned earlier the provision in Clause 3, the presumption against a lack of capacity. Are you hedging towards inclusion somewhere in the Bill of a parallel presumption against lack of treatment?
Dr Wilks: I do not quite follow the point.
Q270 Jim Dowd: The presumption in Clause 3 is that unless it is demonstrable that people have incapacity you assume they do not. Therefore, in the circumstances particularly that you describe as unforeseen or perhaps unforeseeable circumstances that people might find themselves in, notwithstanding the existence of an advance directive or instruction, should the presumption be that they should be?
Dr Wilks: No.
Dr Nathanson: We believe it is absolutely imperative that there is no assumption or presumption that people should or would say yes to treatment or no to treatment, that it should be absolutely open to an individual, beyond basic care, to make those decisions for themselves with the support, help and advice and all the other things that the health care professional and, indeed, the family, friends and others are around to provide, but that there should be no assumption or presumption of accepting treatment.
Q271 Jim Dowd: Even if they were comatose, for example?
Dr Nathanson: That depends upon the circumstances in the sense that when somebody presents at the hospital, for example, with nothing known in advance, as an emergency, then we make the assumption that you will do what you can to help that individual, particularly if there is not time to consider what their wishes would have been. But that as soon as possible you then find out what their wishes are, if they are known, or would have been, and that gets factored into the longer term, which is actually quite short-term in terms of decision making. You do not wait when somebody collapses and stops breathing to find out whether they want to be resuscitated; you do that at the time unless in advance, if they are already on a hospital ward and they stop breathing, in which case you do know what their wishes are and those wishes can be respected in those circumstances.
Q272 Jim Dowd: So the actual presumption is towards treatment, is it not?
Dr Nathanson: In an emergency when nothing is known, yes.
Dr Wilks: That, of course, in some cases has a strong evidence-based dimension to it. You may well be faced with a situation where somebody says "There are circumstances in which I do not wish to be treated" but we do know, for instance, that if somebody has a cerebral vascular episode, a stroke, the better the acute treatment is as quickly as possible the better the chances of a good outcome. So I think it is a requirement for a doctor to act in the patient's best interests by providing treatment at that stage.
Q273 Baroness McIntosh of Hudnall: I think the term "best interests" has come up again and again and again in this discussion, as inevitably it will. It is an interestingly volatile idea, best interests. It is in this Bill, it is not in the Scottish Bill; the Scottish Act talks about these issues in another way. Could you tell us whether you think that it would be in the interests of making a better Bill for "best interests" to be defined more narrowly or more precisely than it currently is, and specifically, can you also talk to us a bit about how clinical best interests are to be balanced against best interests taken to be in a wider sense? I noted in your written evidence that you did mention the fact that you felt that best interests could be taken to include a wider set of interests than just the patient's own immediate clinical interests. The other question we wanted to ask was whether the Bill would benefit from a statement of principle similar to that which is incorporated in the Scottish Act being on the face of the Bill?
Dr Wilks: Yes, I think I have alluded to this point already. I think we would, because experience in Scotland has suggested that it is helpful and certainly does not create any circumstances in which the clauses that follow the statement of principle in any way are restricted or curtailed. So, yes, we would like to see that. We would also like to see a definition of "best interests" if one can be found, because you quite rightly said it is a complex area. We do not have a particular view as to the benefits of having either benefit or best interests as your terminology, but there are some differences. What is clinically and generally beneficial to somebody is perhaps a little bit clearer than entering into a competitive thing about which best interest is best. I do not think that is a huge issue. What I do think is that we need to be absolutely clear, as the BMA has consistently said, that the doctors role is two-fold: a clinical, best interest assessment must be made of what would be the best treatment; what would be the advantage of treating or not treating, and you can make that assessment in not narrow but very defined terms of physiological outcome but you may well not be acting in the patient's overall best interests in that that is exactly not what the patient wants you to do. It is also quite possible to achieve greater clinical benefit in terms of measurements of blood levels of things and regard yourself as doing an extremely good clinical job and not noticing that the patient is suffering terribly from their condition even though you may manage to maintain the blood sugar. A good physiological outcome is by no means not the only goal of good medical treatment. We define best interests first of all in much wider terms and secondly we define it in terms of what the patient himself or herself would regard as a benefit or best interest to him or her, not what the doctor thinks. That is where we have this vacuum, which I have already alluded to, where the opinion, the view of witnesses and close family members is helpful to the doctor in making a decision. What the draft legislation does now is to codify that to somebody who has a responsibility to look after those best interests.
Q274 Baroness McIntosh of Hudnall: Can I follow that up? One particular aspect that slightly concerns me is that you appear to be suggesting, certainly in your written evidence, and you have alluded to it elsewhere today, that there might be circumstances in which that which was not in the interest of the patient but it might be in that patient's wider interest if that particular intervention was going to be of benefit to his or her family that that might be construed as being in that patient's best interest. I am sorry that is a very complicated sentence but it is a rather thought. I am concerned about the possibility that that is moving the idea of best interest slightly away from the patient's own interest and towards the interest of others with reference to the patient rather than directly in that patient's best interest.
Dr Wilks: I think that depends how widely you cast the definition. This is an issue that needs to be addressed and thought through and not ignored because the best interests of someone who has a genetically linked disease which has been diagnosed which cannot be treated therefore a genetic test which would be of no benefit clinically or otherwise to them but it might nevertheless be to the benefit of them as a family member in helping to diagnose the possibility of medical diseases in their immediate family and intervene on those and possibly treat them or alleviate their progress. I think there are circumstances where genetic testing is a good example. The test about the test is that it causes minimal harm to the patient but then benefits somebody else is not something that we should prevent the opportunity to do.
Q275 Baroness McIntosh of Hudnall: It seems to me this does link very closely to the research issue.
Dr Wilks: I think it is an important area that needs to be explored rather than ignored.
Chairman: I am anxious to get your view before we finish on general authority.
Q276 Baroness Knight of Collingtree: In fact my question follows on very well on what has just been said because I want to ask you about your concerns which you expressed on Clause 10(4)(b). When you finished your comments about the lasting power of attorney you said, "the BMA considers that treatment should only be provided where it is likely to provide a net benefit to the patient". It seems to me that that is very straightforward, that is what you believe, but it does not quite tie in with what you said about best interest, and that worries me. Can you define for this Committee what you mean by "net benefit", is it getting better or is it staying alive or is it avoiding suffering? What is it?
Dr Wilks: You make two judgments on that. As I have already said the assessment of a patient's clinical situation may lead you as a doctor to feel there are certain treatments that are appropriate or not appropriate or there may be no treatment that is appropriate and the treatment might be withdrawn. A fundamental principle of good medical practice is that if a treatment is no longer providing benefit to a patient, and therefore by definition they will be causing harm, then the doctor has an obligation at the very least to consider whether it should be withheld or withdrawn. That is a very clinical type of assessment. As I said before the best interests of that particular patient can only be judged in the light of how they would feel about circumstances in which they might or might not wish to have treatment or might refuse treatment or have treatment withdrawn. We are very concerned. As I have said there is absolutely clear guidance, both our guidance and more importantly in the General Medical Council's guidance, there is a process of consultation and consensus taken with families even though it is the doctor that makes the clinical decision under the current rules, it is absolutely essential. What we are welcoming here is the opportunity for a third party who knows the patient well and acts within authority, probably an LPA, who can make decisions about treatment and can make decisions to refuse treatment. We believe that the overall guidance that both we and the GMC have produced about the withholding or withdrawing of life supporting treatment places a very, very strong requirement on doctors to behave in a way that is legal and ethical and compassionate. That is one of the reasons that we feel that a requirement for a patient to specify in particular that an LPA can only apply to the removal of life supporting treatment, it specifies that. We think it is unnecessary because of the large framework of very detailed guidance that we have. A final point on that is that we feel in the vacuum that that lack of authority might produce we are concerned that doctors may continue to treat simply because they do not have any directions not to and that treatment continuing in the circumstances where to continue treatment is futile would not be in the interests of the patient either. In brief what we feel is that people are competent to make decisions about all aspects of their health care, including views about life support treatment and they should be entitled to do so as long as at the time they understood exactly the implications of their decision.
Q277 Baroness Knight of Collingtree: I shall have to read those very lengthy remarks with extreme care before I judge whether my question has been answered or not. I did not understand one thing you said, you said that if no benefit was being experienced then there was obvious harm. I do not agree with that at all. I think a lot of people who are concerned about this Bill would also find it difficult to agree with you because having no benefit may be very sad but it does not mean that it is doing you harm exactly. I wonder whether it is possible that either yourself or Dr Nathanson might have read an account in the paper yesterday of an elderly widow who against her will, against that of her family was in fact being starved to death in hospital. The grandson is reported to say, "basically they wanted to end her life. The longer they refused to treat her the worse it is for her. It seems to me they feel the best thing would be for her to be allowed to die and I do not think that is right". Being a young man who knows how to deal with matters he went to get a High Court judgment and the High Court judgment was that the hospital really must continue to feed that lady. Whether you think that is right, it is reprehensible or not I still come back to this question of net benefit because I read with some horror ultimately the doctor has the right to make the final decision. If doctors are making that sort of decision how can it be in the net benefit of the patient?
Dr Wilks: You ask about that case, I do not know the details of it but what I do know leads me to think you are absolutely right in saying it is correct that the case should be reviewed and further consensus should take place, I agree with you on that. I do think it is important to set out a fundamental principle, when we talk about the withdrawing and withholding of any treatment, obviously particularly in the case of life-supporting treatment where it is likely or in some cases certain that the withdrawal of treatment will result in or be followed by the death of a patient that that is not the doctor's intention. When I talk about benefit I am talking about a situation where the doctor is saying initially, I do not think that clinically this treatment, whatever it is, is of benefit to the patient, there may be more harm and distress in the treatment being given rather than it being not given. However, that is the first step towards a judgment as to whether it is the patient's view as to whether that would be in their best interests. It gets us back to the point that the more people who give us information about their wishes when they are component the easier it is to make these judgments when they lack competence and capacity. The absolute central point about a decision that a doctor makes to withdraw any treatment is that the intention is to longer give treatment that has no clinical benefit, it is not with the intention of terminating life. Any doctor who makes a decision that someone's life in common parlance has no value and should be terminated and ends treatment with the intention of terminating life is acting illegally and unethically.
Q278 Baroness Knight of Collingtree: It is a matter of very grave concern not only to me but to a large number of people if your real view is that if there is no discernible benefit to a patient then the patient is in a harmful situation. I think that is something which worries a lot of people.
Dr Nathanson: It is not that we are saying if there is no benefit it is harm, we are saying if there is no benefit you look to see if there is harm. Almost every treatment has both benefits and harms and it is the balance between the two that is crucial, that is what we mean by net benefit, you are looking for a treatment which has more benefits than harm. If there is no benefit then you need to look at what the harm is and if that harm is significant that is when you start to raise the question: is this a treatment that should be continued? No benefit and harm usually means it is a bad treatment. That does not mean no treatment it means look for alternatives. I think that is the first message. The second thing is we do not know anything about this case but the one thing which seems to me is absolutely clear from looking very quickly is that there was not enough communication, not enough time given and not enough discussion. That is the whole process. One of the things we kept talking about today is the importance of communication, spending time, because that is part of the benefit. Part of the benefit is what matters to this individual.
Q279 Chairman: This is a specific case, it is much more the general rule that we are looking for.
Dr Nathanson: The general rule is that is why you have to find out as much as you can about what the patient wants from as much as you know about that patient, including talking to his or her family because they know so much about them. That helps you to build up the picture so you can then discuss with the family the different ways of achieving the benefits and minimising the harm.
Chairman: I am anxious to get your views on the general authority.
Q280 Mr Burstow: It follows on from this. Given the current state of the law in respect of withholding the withdrawal of treatment materially speaking will this Bill make the process of making those decisions simpler in terms of enabling a decision to be made more quickly or will it make it more difficult for decisions of this sort to be made from the point of view of the clinician?
Dr Nathanson: I do not believe this will affect those decisions at all. The decisions that will be affected, which is much welcomed, is that it will be the patient's view on treatment decisions and treatment choices. I think that is much more welcome. We get some elements of that now through those patients who have completed advanced directives but this will enlarge that process. In that sense decisions that are made will be on a better legal basis but more importantly than that all decisions that are made about choices between treatments will be based on what the patient wants.
Q281 Mrs Browning: On the face of the Bill there appears to be no limitations placed on the types of decisions made by carers under the general authority and it is relegated to the Code of Practice. You have expressed some concerns about that, I wonder if you would like to give us some examples as to why you think this may come into conflict with your own areas of authority in terms of the doctor taking decisions for the patient?
Dr Wilks: I think at the moment partly because there is a certain fuzziness between those different powers and responsibility under general authority because one potentially comes into conflict with another. It is something that the Bill needs to be a little more clear about the limits and the specifics of the different types of authority otherwise I think doctors may feel they are not absolutely sure to what extent their general authority allows the doctor to do things in the patient's best interests that they commonly normally do without any restriction now. That is a very important principle. On the second point to your question, the difficulty of resolving disputes about what the doctor might feel either was best or had authority to do and the existence of any other evidence, such as an LPA, such as an advanced decision is something that needs to be subjected to some kind of resolution process because at the moment we have a situation where that might go straight to court. In most cases if you go to court to reach a medical decision it is usually a sign of the failure of the process. I think we need to see more, if I may say so, in the codes about how these disputes are resolved and a bit more distinction between the types of authority.
Chairman: The only areas we have not covered are dispute resolutions and resource, would you be kind enough to write to us on those issues and any other remarks you wish to make. It has been a very, very helpful session.
Memoranda submitted by the British Psychological Society and the Royal College of Psychiatrists
Examination of Witnesses
Witnesses: PROFESSOR GLYNIS MURPHY, Professor of Clinical Psychology in Learning Disabilities, DR KAREN EHLERT, Honorary Secretary of the Division of Clinical Psychology,
DR PETER KINDERMAN, Reader of Clinical Psychology at the University of Liverpool, DR CATHERINE DOOLEY, Consultant in Clinical Psychology, DR CAMILLA HERBERT, Clinical Psychologist specialising in neuro rehabilitation, British Psychological Society and DR TONY ZIGMOND, Consultant in General Adult Psychiatry at Leeds Mental Health Trust, Royal College of Psychiatrists, examined.
Q282 Chairman: Thank you all for attending. I think you heard the announcement I made to the previous witnesses, would you be kind enough to introduce yourselves briefly.
Professor Murphy: I am Professor Glynis Murphy, Professor of Clinical Psychology and Learning Disability at the Tizard Centre.
Dr Ehlert: I am Karen Ehlert, I am from the British Psychological Society and I am the Honorary Secretary of the Division of Clinical Psychology.
Dr Kinderman: I am Dr Peter Kinderman reader of Clinical Psychology at the University of Liverpool. I Chair the British Psychological Society's Working Group on Mental Health Law Reform.
Dr Dooley: I am Dr Catherine Dooley, I am a Consultant Clinician Psychologist working with older people in South London. I am also the Clinical Convener for the BPS Group developing professional guidelines on the assessment of capacity for psychologists.
Dr Zigmond: I am Tony Zigmond, a consultant psychiatrist in Leeds. All my patients are currently detained under the Mental Health Act. I am the Mental Health Law Reform lead for the Royal College of Psychiatrists.
Dr Herbert: I am Camilla Herbert, I am Chair of the Division for Neuropsychology in the British Psychological Society and I work in brain injury rehabilitation.
Q283 Chairman: If I can start, as you know the draft Bill will put into the statute a number of principles that are already in the common law but it also establishes a new system relating substitute decision making, in your view does the draft Bill go far enough to improve the decision-making process for professionals, families and carers and those who are unable to make decisions for themselves? Does the draft Bill place an emphasis on the need to facilitate the making of a communication by people with incapacity?
Dr Kinderman: Broadly, yes. Like everyone else we welcome the Bill. We think in its basic structure it is very good. We obviously have some concerns, you have had some written submissions about some of the concerns we have. With respect to making and communicating decisions one of the things that we generally believe is there are quite a few codes of practice round, especially the British Medical Association's code of practice drawn up with the Law Society which if the Bill makes reference to a code of practice which enshrined those principles then broadly the Bill would meet many of the requirements that we have.
Q284 Chairman: Are you saying that the principle should be a code of practice?
Dr Kinderman: You asked me in the second question about the draft Bill placing emphasis on the need to facilitate communication and in that respect the guidelines drawn up by the British Medical Association and the Law Society are very good and if reference to that is made in the Bill then yes the Bill has many of the attributes we would want in it.
Professor Murphy: We would also like to see a statement of principle at the beginning of the Bill, much like in the Scottish Act: "All decisions made on behalf of an adult with impaired capacity should benefit the adult and take account of the adult's wishes if these can be ascertained, take account of the views of relevant others... restrict the adult's freedom as little as possible... and encourage the adult to use existing skills or develop new skills", and that would include communication skills.
Q285 Chairman: You do not see any conflict of the principles on the face of the Bill and the functional approach that is in the rest of the Bill?
Dr Ehlert: Not at all.
Q286 Chairman: You do not see any conflict?
Professor Murphy: I do not believe those principles will conflict.
Dr Zigmond: One of the advantages and disadvantages of putting things in statute is that it improves clarity but of course it makes the boundaries much more certain. There are certain areas where it seems to us that there may be some difficulties, and if I can very briefly mention three: One would be patients who wander, not particularly trying to get somewhere but they wander. What happens if the nurse keeps directing them? As you know at the moment there are many examples where doors have two handles or some other system which in some ways does restrict a person's movement. The way that it is expressed at moment it is unclear as to how that would be dealt with. A second would be bathing, somebody who just pushes everybody away all of the time, what does one do about that basic care? Is that prevented by this Bill with the wording it has now or is it not? A final example relates to an area of difficulty which is where one is treating people for a physical disorder but they suffer from incapacity. Supposing one has a patient with mild heart failure or who needs antibiotics and they are just pushing people away where would the authority be or would it not be and can one then revert to common law to give that treatment? It is those sort of areas where there are some concerns.
Chairman: What I would like to do now, as we did with the previous witnesses, is to bring up the questions on research. I think you yourselves and the previous witnesses are particularly expert in this area.
Q287 Jim Dowd: My powers of observation would indicate most of you were sitting in the back rows when I asked the questions earlier so I will not go through them in the same detail. What provision should we have in this Bill regarding the involvement of incapacitated adults in research?
Dr Zigmond: I think from the point of view of psychiatrists we take a slightly different view from that which I heard the British Medical Association express. We put a lot of faith in ethics committees, we suspect they need considerably more guidance, which we would want in a code of practice. We have some difficulty with the overall notion that there should never be substitute decision-making. Ethics committees may well decide that a piece of research is very proper and yet I as an individual may say that I want no part in it. I think there probably ought to be a distinction between those types of research, and clearly the research is essential, where there is the ability for substitute decision-making compared to that where there is not. If I can give you an example, if one is doing research over a long period of time perhaps relating to a particular form of learning disability then there should be no difficulty in terms of time anyway in having somebody authorised who would be looking at it from the point of view of the incapacitated individual, even having got an okay, as it were, from a research ethics committee, and I will come back to that. If one was doing research on investigating different treatments within the first hour of admission for people who suffered a head injury one could not then do that research because there would be no mechanism for doing that. We thought about how to bring these together, and I am grateful to one of my colleagues here, one option would be, again it would be in the guidance for the research committee, they would have to consider whether or not as part of the protocol for research there was a requirement for substitute decision-making and the code would give guidance as to how they would come to that decision.
Dr Kinderman: To follow up on that, the answer to the first question is, yes, the Bill should give consideration to the role of research and how people give consent for research. Like Tony we do have some concerns about the idea of having blanket decision making available for everybody. The third point which Tony alluded to is one of the mechanisms possibly should be we generally like the role of local research ethics committees and we think they are quite strong and quite powerful bodies that do legitimately constrain research. The way that the legislation could possibly work would be to give guidance to ethics committees on how they offer approval or guide development of the protocols put before them rather than legislate for specific research and take specific actions.
Q288 Chairman: Would they then need to refer to the code?
Dr Kinderman: Yes.
Q289 Chairman: You would do that. There would be some sort of provision in the Bill and some sort of code.
Dr Kinderman: If the Bill were to a refer to the need to follow proper procedures in obtaining consent for research and is to refer to the idea that local research ethics committees can give due consideration to the role of the work set up by the Incapacity Act that would defer the responsibility to the ethics committee not to the researcher. I cannot speak for Tony but I regard local research ethics committees as well constituted, potent bodies.
Q290 Jim Dowd: You covered nearly all of the ground in the series of questions which I had. Research can benefit the individual although in a general sense it is looking further down the track to help others, are you satisfied that we can sufficiently safeguard the individual, let me use the case of those with Alzheimer's, from being exploited in the pursuit of research which is not connected with any research itself of the kind?
Dr Kinderman: My initial response to that is I think local research ethics committees do a good job of protecting research participants against exploitation. At the moment the whole purpose of this Bill is to plug a gap in legislature and I think the structures allows local research ethics committees to address that issue, specifically with respect to incapacity and give people the power they need. Most of my salaried work is doing research on people who have questions of capacity under the Mental Health Act and I think local research ethics committees do a very good job balancing the risks and benefits for those individuals because there is good laws behind them.
Q291 Baroness McIntosh of Hudnall: Can I ask you the same question I asked your British Medical Association colleagues which is about the state of research at the moment and in what way, including provisions for research within the confines of this Bill, it will create opportunities or improvements that you do not currently see available? What are the inhibitions to research being carried out now? Dr Kinderman you said you were engaged in research, you were already plugged into your local research ethics committee, you have presumably presented them with opportunities to consider issues of the kind that would be helpful if this issue were in the Bill, what is going to get better?
Dr Zigmond: I think many research ethics committees quite properly are very perturbed about this area. I think they are more reluctant to give approval than they would do if there was a clear framework within which they could operate. In fact one of the reasons why I came down to the decision that in many circumstances a research ethics committee should require a substitute decision-maker is again because of the confidence that it would give them that this was being done where the balance between what should be extremely minimal risks for the individual who is not able to consent and the potential benefits either for that patient or at least for those with similar conditions is clear. It is really a feeling that this would enable research ethics committee to be more willing to grant permission because of the safeguards. At the moment people are just not sure whether they can or not.
Professor Murphy: Perhaps I can add to that, I know a number of research projects that have been posed in London which were turned down because of the nervousness of ethics committees, especially where it was a sensitive topic such as sexuality. I myself had a great deal of difficultly getting projects through ethics committee that related to providing treatment for men with learning disabilities who committed sex offences. It seemed to me blindingly obvious that somebody should have tried some kind of framework. I think the ethics committee were opposed partly because they were sex offenders and partly because they were men with learning disabilities. They were a bit unclear about exactly how procedures for consent should take place and whether they were sufficient, and so on. I think this will make it all much clearer.
Q292 Stephen Hesford: I want to focus on Clause 27, if I may. Clause 27 in a way works forward and works backward. It works forward in the sense of how does the Mental Health Act relate to this Bill and it works backward in the sense of how does this Bill relate to the mental health legislation. It is that forward and backward relationship that I want to explore. Is there an overlap? Should there be an overlap between this Bill and either the Act or any new form of mental health legislation? If there should be an overlap what should that overlap be? Does Clause 27 adequately express the relationship?
Dr Zigmond: First of all there is bound to be an overlap because within the definition of mental disorder both in the code and the Mental Health Act and the proposed Mental Health Bill almost any common conditions that lead to incapacity are included.
Q293 Chairman: When you say the Mental Health Bill, do you mean the draft Bill?
Dr Zigmond: The draft Bill to come. The draft Mental Health Bill rather than the first Bill. The first thing is many patients could be subject to both. The second thing is that as I understand Clause 27 (I think I did not understand it to start with it let me add) I think it is only referring to those people who are currently detained under the Mental Health Act, it is not talking about those treatments which are covered by the Mental Health Act or patients who are not detained under the Mental Health Act. My reason for saying that is that first of all it says in Clause 27 if the giving of treatment to a patient is regulated unless they are detained under the Mental Health Act it is not regulated by part four. The second reason for saying that is that part four of the Mental Health Act includes not only those treatments which people commonly talk about with concern such as ECT and medication but also includes nursing care, habilitation and rehabilitation. If it is not referring to only those detained in any nursing care, anybody who requires it for incapacity would have to come under the Mental Health Act, that is clearly nonsense. The problem then is for many people there may be almost a choice as to which act to use. Let me give you an example of some of the difficulties we think that may present. In this Mental Incapacity Bill there is regulation and authority given both for advance statements and lasting power of attorney. If you ended up under the auspices of this Bill then those would be on it. If you ended up under the auspices of the current Mental Health Act or the draft Mental Health Bill they would not be on it. That seems to us to put professionals in a very difficult position and to be frankly a nonsense in relation to patient care. I think the second bit that is important in relation to this is the protections that are built into the Mental Health Act which are not built into this. There is a later question about Bournewood, I do not know whether you wish me to go into that now.
Q294 Chairman: If you would.
Dr Zigmond: Bournewood related to the admission of a patient to hospital but also to his treatment. To separate the two is in fact very difficult, admission includes treatment and related to specific treatments. The Mental Health Act it seems to me gives three particular protections, it protects people because they have a right of appeal, it protects people because a system for second opinions, statutory second opinions where the doctor is not choosing which doctor to go to give a second opinion, and in some circumstances it is not only a medical second opinion. Thirdly in terms of the inspectorate in the form of the Mental Health Act Commission. This Incapacity Bill certainly puts in if not a right of appeal then a system for dispute, which I will call a right of appeal. It puts in some inspectorates but there are questions about how far that goes. It has no system for second opinions. Patients who for example are in a nursing home and require treatment, medication for their mental disorder would continue to get it. According to this Incapacity Bill if patients continue to be compliant they could be given the ECT without the use of the Mental Health Act or any of the protections which Lord Stein said were missing. If one looks at the draft Mental Health Bill, the new proposed Bill chapter five in there addresses some of these issues only for patients in hospital, not for patients either in nursing homes or in the community. There continues to be very big omissions in our view.
Q295 Stephen Hesford: Dr Kinderman wanted to say something.
Dr Kinderman: You mentioned forwards and backwards in terms of the relationship between the two bills. There are specifics and generalities. Tony has talked about one of the specifics, which are that weaknesses need to be tidied up. There is also an issue that both the Royal College of Psychiatrists and the British Psychological Society have about relationships between the two, which is that although they deal with areas of mental health overlapping and they both deal with proxy policy decision-making there are many quasi medical decisions made on behalf of patients who cannot make decisions for themselves and we both have concerns about that on the grounds that one of the things we like about this Bill is it essentially validate people's decisions made when capable. It says that the junction between allowing somebody to make a decision for themselves and stepping into to making a decision for them is based on incapacity. We are concerned on basis of the Mental Health Bill it is effectively the same issues, so in the feed forward and the feedback between the two bills there is a disparity in approach taken in the two bills. On balance although the specifics of this Bill need to be looked at the approach of validating the consensual wishes of somebody who is incapable of making decisions needs to be looked at.
Q296 Stephen Hesford: As I recall it the two bills in Scotland do a similar job, they both contain the same set of principles so they are not necessarily parallel but separate. Are you saying that something ought to be done either to this Bill or outside this Committee something to the draft Mental Health bill, and if so what is it, to make the relationship more symbiotic from a practitioner's point of view?
Dr Kinderman: There are three elements to that, the first answer is yes. The second answer is in part it does relate to the Mental Health Bill but in part it relates to the statements of principle, which are certainly ones that we at the Psychological Society believe. We believe that the law should rule that if people are able to make decisions for themselves unimpaired by mental illness in the case of the Mental Health Act or unimpaired by mental incapacity of the sort of conditions we are talking about for the Mental Incapacity Act they should be allowed to do that and there is symbiosis between the two bills. One of the differences between the Bills is that this Bill is welcome. If people really are unable to make decisions for themselves somebody has to make the decision for them and we will clarify the law on that point. One of the difficulties of the Mental Health Bill and one that concerns us and the Royal College of Psychiatrists is that it takes a different approach to the question of whether the law can intervene in people's lives.
Q297 Stephen Hesford: In terms of Clause 27 what would you do, if anything, because I have not heard anything, that would address any of the issues that we have been speaking about?
Dr Zigmond: Let us try and be specific in relation to the general authority. One of the questions that you have asked is, what should be excluded? What should not be covered by the general authority? That is for discussion. If I can give you some examples, in order to build in the Bournewood type protections one would warrant in relation to treatment for mental disorder there were mirrored protections, there were similar protections to those in the Mental Health Act. One would not want to set up a completely separate system so again if I may just paint a simple picture for you, if you have a patient who is requiring medication for mental disorder, after an equivalent length of time under the Mental Health Act there should be a second opinion. How could one do it? One could have a second opinion process under the current Act or whatever comes under the new Act, you could have that accessed by two acts rather than one and that would keep duplication to a minimum, training to a minimum and bureaucracy to a minimum. That is one thing, there are others. We think that there are questions as to what invasion of medical treatment should come under the general authority. If there are considerations there then one of the things one could do is have a second opinion, have a range of medical professionals and adults. Again to give an obvious example if it is thought that somebody needs a lot of teeth removed is it right that it goes under general authority or should one at that point have a requirement that somebody else skilled in that work would be brought in independently to confirm the clinical advantage of this? It is building on this. That would not of itself mean that in terms of Bournewood it would address those gaps. We think we would go further because it would bring in other branches of medicine and stop some of the discrimination between psychiatry and other medical professions.
Q298 Mrs Humble: I want to clarify if could there be a harmonious situation that Stephen was talking about between any mental health legislation and this legislation. On that issue of compulsion that you referred to, which does seem to be a very distinctive part of mental health legislation and at variance to everything that is in this draft Bill. I just wonder if there is any way that we can overcome that?
Dr Zigmond: One of the difficulties is the notion of compulsion. It can certainly be argued that if somebody truly lacks capacity are they refusing anything, are you compelling them any more if they can no more refuse than they can consent. As I say this is one of the difficulties. For example in some very ordinary situations can you compel somebody not to go into the road, you can because that would be immediately dangerous, but it is less than that. This Bill presents those difficulties. There are those of us who believe that a Mental Health Act, (believe very strongly I have to say) should not be forcing anything, any intervention on people who are able to make decisions for themselves. That is a route that they have gone down in Scotland and we would very much like to see the basis of that. We would go further and say in an ideal world - I was advised not to say this but as you have asked the question I will - we think there should be two bills but not these two. We would have an Incapacity Bill very much based on this but with the protection that I just hinted at which would cover all people who lack capacity for whatever reason and then it is true that that would not cover certain groups of people who have committed offences but we would have a separate Mental Disorder Offenders Bill, we would have two but not these two.
Q299 Mrs Humble: Would you also recognise the fact that within this draft Bill it is recognised that sometimes people who will be making decisions whilst they are capable for a future time when they will lack capacity which you as clinicians may not agree with, the family may not agree with, carers may not agree with but those decisions will hold, whereas when you are dealing with your patients who are confined under the Mental Health Act you are making decisions on their behalf and they may well be expressing opinions that they are totally opposed to what you are doing to them. I have real difficulty trying to come up with a situation where we can harmonise those two.
Dr Zigmond: I think it could be harmonised. Leaving that to one side can I say that I would not want this to detract from building in the protections that I talked about. .
Dr Kinderman: Tony and I very much see eye to eye on this. Is it possible to come up with a situation where we look out at the world and see nothing but fluffy bunny rabbits? No, there is always going to be difficulty out there. A big question is, like Tony says, is the issue about two bills but not these two bills. There are a number of options. There are a couple of things that are important, there could be better harmony between the two bills, both Tony and I are making some percentage of our evidence today about the relationship with the Mental Health Bill. The way this current Incapacity Bill is structured has the safeguards that Tony mentions but the basic principle, and this is one of the reasons why we would like the principles to be on the face of the Bill, the principle of people who are able to make decisions for themselves should have those decisions respected is one that we welcome. Introducing that into UK law would only go some way towards harmonising the issue. The reason why I see people who are treated compulsorily under the Mental Health Act and the reason why Tony treats people under the Mental Health Act is because they are not able to make valid decisions about their health care, their health care is perturbed and disturbed by their mental disorder. It is not dissimilar to the reasoning behind the Mental Incapacity Act because you are not making valid and consensual decisions so decisions are perturbed by the mental disorder and therefore it is in the realm of the incapacity legislation in general to say that a proxy decision has to be taken about the validity of the health care. It is also the case that many of the people retained under the Mental Health Act I have seen for research purposes are perfectly able to refuse participation in research and I have to by law accept that refusal, I cannot say because they are mentally ill they have no rights under law.
Q300 Mrs Browning: Can I bring you back to the Bournewood case, some of the problems that occurred there were that carers who did have capacity and who were able to speak for that individual were rejected by the professionals and had they had more input earlier we would not have needed what was described as medication and then after a period of time a second opinion. I can see the strength of having the opportunity for an independent medical opinion so long as when you are dealing with people with autistic spectrum disorders the person giving them the second opinion actually has a specialism in the subject. This is the real problem that we have, we are talking about conditions like ASDs, which come under the remit of psychiatric services and inpatient treatment but there is a paucity of psychiatrists in this country who are actually able to deal with a combination of either autistic behaviour, which is not a psychiatric condition but is what a lot of us would regard as fairly normal autistic behaviour however challenging and those people with an ASD who do have an overlying psychiatric condition. How do you see this draft Bill specifically helping cases such as the Bournewood case?
Dr Zigmond: I agree with everything you say. The only thing I would add is there is a shortage of psychiatrists in this country not just in that particular area.
Q301 Mrs Browning: Good plug.
Dr Zigmond: I agree entirely. One of the things that we try to do when I served on the relevant bit of the Mental Health Act Commission which addressed issues not only of those where there could be expertise in particular areas and the importance of trying to match people with expertise but also looking at race and gender because we also thought that was important. They are important but whilst we have the shortages that we have it is very difficult to ensure that the highest standards we wish for are always met. I agree with everything you say.
Q302 Mrs Browning: Are the resources and lack of trained psychiatrists going to have as much an impact on this legislation as they are having under the general mental health services and the Mental Health Act?
Dr Zigmond: Except that much of this legislation of course is not relating to psychiatric care.
Q303 Mrs Browning: I realise that.
Dr Zigmond: But where it does, yes, it will.
Q304 Baroness Knight of Collingtree: I ask this question as much to get it on the record as to ask your opinion of it. It is my understanding that many mental patients' conditions, particularly those with psychiatric worries, vary greatly according to whether they take their medication or whether they do not take their medication. In other words, there are times when they are perfectly logical if they have taken their medication and times when they are not. Could we cover this point? Am I right or wrong on this? How do you deal with it?
Dr Zigmond: You are right. I am not quite sure what it is you are asking. As a statement you are right, that many patients with many disorders are well if they take their medication and poorly if they do not.
Q305 Baroness Knight of Collingtree: But we are dealing with psychiatric patients and mental patients.
Dr Zigmond: They would be no different from somebody with epilepsy or diabetes. It is really rather stigmatising I think to pick out one particular group because it applies to most people who have chronic conditions which require medication. If they do not take the medication, they will be poorly. Some of those will have their decision-making ability markedly damaged - an obvious example is diabetes - if they do not take their medication. One needs to be careful about singling out one group.
Q306 Baroness Knight of Collingtree: This is the Mental Incapacity Bill and so that is why I am talking about that particular group. I do not mean to stigmatise them.
Dr Kinderman: One of the issues which follows from that is that occasionally you are presented with somebody who makes a decision and you, as a clinician, have to follow that through, and then they make a different decision and you have to follow that through. There is a logical position which I think has to be incorporated in the legislation which is that the decision might actually be suddenly changed to one which deals with that fluctuation of capacity. You have to have a plan of care as a clinician for an individual whose capacity fluctuates and that is a subtly different way of conceptualising their clinical problem. "Do I let this person walk down the street today and do I let this person walk down the street tomorrow?" You have to make a clinical decision as a clinician about what to do in both circumstances, and the decision as a whole has to cope with the fluctuation as a whole.
Q307 Baroness Knight of Collingtree: Thank you, Dr Kinderman, that was what I wanted to bring out. Does the Bill actually cover that variation that you have to deal with in the general rules?
Dr Kinderman: Yes, broadly. One of the issues it relates to is the issue of general authority. If the Bill were worded in such a way that preventing somebody from wandering were covered by general authority but their capacity as to whether it is dangerous to walk the streets or not was to fluctuate, what you would actually have to do is make a decision about whether a wider clinical decision was necessary on how to deal with their wandering and fluctuating capacity, and that would be the issue at question. One of the things which hopefully we will come on to in a minute is that might be a decision which is covered by general authority, or restrictions on that person's liberty might be such that you would need to do something a little more unusual and you would need more authority to deal with that.
Q308 Lord Rix: If you take it further and look at people who have a limited mental capacity permanently, not a fluctuating one, would you think it possible, and how would you make it possible, for them to make advance decisions, say, to refuse treatment? Do you think this could be written into the Bill?
Dr Kinderman: Yes, absolutely it can be written into the Bill, and I think the Bill as it stands ---
Q309 Lord Rix: You think it is adequate?
Dr Kinderman: I think it needs to be followed up with a robust code of practice but the general principle, does this individual at this time in consultation with this responsible clinician understand the issues and the way they have been laid out, whether or not they have made a decision, the Bill allows for that and that is good.
Lord Rix: Good.
Q310 Mr Burstow: General authority, which we have been talking about for some while. I have a couple of questions but, just to make sure I understand the discussions so far around the two different Bills, can I ask this? You have described the two parallel systems of proxy decision making effectively, who decides which set of proxy decision making actually applies?
Dr Kinderman: There is not a Mental Incapacity Act at the moment.
Q311 Mr Burstow: Assume there is, who would then decide?
Dr Zigmond: I think that is one of the difficulties which we will be faced with. There are certain areas where it would be clear, an obvious one being that both the current Mental Health Act and the proposed one do not have to provide any lack of capacity. So if people have incapacity and for some reason you have to go down the road of compulsion, then it will be the Mental Health Act.
Q312 Mr Burstow: But it is unclear?
Dr Zigmond: For an incapacitated patient it would be very difficult. At the moment of course with the current Bill they need to be in hospital, and that may make a difference, whereas if we had a Mental Health Act which does not require admission to hospital, does not require in-patient status, it would become even more difficult. But, as I say, one of our fears is that it could lead to some of the provisions in this Bill being overridden.
Q313 Mr Burstow: I wanted to get that out because it is something we have to deal with. Can I ask on the question of general authority, the evidence from the British Psychological Society in a way puts forward the argument there is a need for a further element, another category, of proxy decision making, the idea that where you get to a certain intensity of activity or treatment or whatever that would then require registration with the public guardian. But that still leaves a whole host of issues which might fall within the general authority. Do you feel the general authority is a defendable idea which should stay in the Bill and how can we draw the boundaries on it once we exclude a whole range of things which should be referred down the registration path?
Dr Herbert: I think we have a general consensus that there is a huge amount of decision making which could usefully come under general authority which at present is happening anyway but has no clear framework. So many day to day care decisions are happening without a clear legal status and general authority would allow a vast chunk of those decisions to be made, whether in the best interests or that restriction would happen, but there is a threshold beyond which the seriousness of the decision and the nature of the decision would step in and say, "We just cannot work on best interests, we have to stand back and look at this." What we are saying is that that is not a one-off decision which is suitable for all cases, but sometimes it becomes a very straightforward, "Okay, we need to log the fact it has moved to a different level" and you do not need to do much more in terms of assessment because it is clear what the issues are. However, there are some small number of complex cases where you need a more detailed assessment and those are the things which are not specified in the Bill and probably should be in the code of practice but you need something which takes you through those levels in a systematic way.
Q314 Mr Burstow: What would be the test you would be applying which would enable you to make that judgment which should be in those codes of practice to ensure everyone adopts a similar approach?
Dr Dooley: I think there are a number of factors within that. I do not think we can specify the facts but a code of practice will be quite important to operationalise those. You have the severity of the decision; you have the person requesting the withdrawal of life-maintaining health care and matters like that. You also have the complexity of the situation, and I practice with older people where you may have disputes with carers, where a family member wants one thing and another member another and so on, so there is an area of complexity there. There are certain decisions which by necessity are high profile, and you have mentioned the one in the papers recently where in a sense to protect the people involved you need a formal decision making process and a monitoring of that.
Dr Zigmond: There are some areas where one would go towards registration but for many one would still want to have some system of notification. One of the difficulties it seems to us is that if there is no notification to a central body, how can anybody know these people exist and are being subject to something, so therefore any inspectorate just goes by the wayside. So we need notification. Secondly, when we met with the BPS and discussed this we decided there were some things which would need very clear thought when going into the codes of practice and it became clear through the discussion that one sees things from different sides depending on what one is used to practising. For example, one of the things on the BPS list at the top is severe life-saving treatment. That may be okay if it can be done in the cold light of day but if somebody comes unconscious into casualty, you would not want to have to go through a system of registration before the doctors could intervene.
Dr Ehlert: The other issue is that at the moment it is either/or, it is general authority or going to the courts. I think going to the courts can be very daunting for some people and apart from that it is also very costly, I would imagine. Earlier in the discussion there was reference to a continuum of factors and I think therefore there needs to be some sort of plan.
Q315 Mr Burstow: That is helpful. I does seem to me, Chairman, that is what this is suggesting, there is always another tier of proxy decision making being suggested. Can I come on to another question regarding general authority again? Several witnesses have talked about the issue of the use of restraint in certain circumstances, or have alluded to restraint being used or suggested there might be circumstances in which restraint might be appropriate for a person who lacks capacity. Is there not a certain situation where the use of the general authority could become a defence in the courts for what many would regard as an inappropriate use of restraint?
Dr Zigmond: Yes.
Q316 Mr Burstow: My final question is on the question of abuse more generally. Does there need to be a specific duty, and, if so, is it on the local authority or some other agency, to investigate allegations of abuse and also to be in a position, picking up on a point already made, to be aware there are people who are potentially being covered by this general authority?
Dr Zigmond: We think the important issue is expertise and availability. In Scotland it comes under the Mental Welfare Commission. Whether it should be a separate body or whether it should come under an expanded Mental Health Act, whether it should come under an expanded CHI system, whether it should be the local authority, we simply feel we should comment on it. The important bit is the expertise and availability.
Q317 Mr Burstow: Are you aware that local authorities already have a responsibility under "No Secrets Guidance" to develop adult protection?
Dr Zigmond: Yes.
Q318 Mr Burstow: Would not a statutory duty help reinforce that framework?
Dr Herbert: We have discussed that, and local authorities do already investigate individual cases. We feel that is not sufficiently robust as it stands at present and what you have is a case-by-case case law build-up in local areas. What we are arguing for is that there should be more national recognition of these issues so you do not have to start each time discussing issues of capacity. At present they operate in a vacuum. The other point on your question of general authority, what happens if there is a question of abuse, and what we are arguing for is as soon as there is a question mark about general authority and you are raising that challenge, that is when you start to say there should be an assessing of performance of some kind, which then opens up the opportunity for anybody who has a conflict with it which has not been solved by normal clinical case discussions, to have a way of taking it forward which is not immediately going to court but assessing it in a more balanced way and trying to take it forward in that way.
Dr Kinderman: You mentioned restraint, but wandering is a better example. At the moment because there is not a system of formal registration of these sorts of decisions with somebody like a public guardian, we do not know how many clinicians regard it as part of the normal clinical practice to restrict people's activity and their wandering behaviour. One of the benefits of a formal system of registering that is you know that and you may well find that people are waiting until it is an impacting decision on somebody's life before they actually decide they need to invoke the law. By having a system of registering these decisions, you would be monitoring it over the years and could find out how to respond.
Chairman: Before we move on to advance decisions, I want to be clear about the assessment of capacity.
Q319 Mrs Humble: Can I ask you the same question I asked our earlier witnesses which is vital because it underpins the whole Bill, which is that process of assessment of capacity. Who should do it? How should it be done? Especially with regard to those people who do not consent to being assessed. Do you think it should be on the face of the Bill or should it be in regulations?
Dr Kinderman: We think on balance it should probably be in the regulations. One of the reasons for that is that it is actually very complex. It is the duty of every doctor and probably every psychologist to have some awareness as they are treating people of that patient's capacity to understand the decisions. That is just a general duty. It is also the case that the vast bulk of the decisions we are talking about which are covered by the Incapacity Act generally will be done under some general authority, it is a standard part of care. The decision as to whether you have to make for yourself as a clinician a formal assessment of the person's capacity, decide they have capacity and decide to act under general authority, decide to make a formal assessment of capacity as part of their normal clinical practice, register the patient as an incapacitated patient and move on and treat them, whether you call in another professional or a more senior colleague, there is a gradation to these things and it should be part of the normal clinical practice of professionals to do that regularly. So the guidance is you should always have a view of capacity, you should assess it within your own competence and call in specialist help to assess the more difficult areas when the decisions are more severe.
Q320 Mrs Humble: Is it satisfactory to have it done in that fairly vague way, of somebody reaching judgment through conversations with their patients, or should there be specific steps laid down, if not on the face of the Bill then in a code of practice, that you ought to be ticking off? If the individual is not co-operating, how can they go through that check list?
Dr Kinderman: I am sorry if you misunderstood. Yes, there should certainly be very clear guidelines about how it should happen and that should be regulated on the face of the Bill. There are two obvious things to say. The first is about the registration of people as competent authorities in this matter. One of the things the British Psychological Society would welcome would be some brief mention of approving certain people as registered practitioners, in the same way as is done under the Mental Health Act, when people are Section 12-approved because they have a specific competence in that area. That is one thing, are you or are you not capable of making these sort of decisions? The other thing is having guidelines laid down in a code of practice, which is referred to in the Bill, but which is flexible and hierarchical. We would certainly welcome strong guidelines but it is a hierarchical thing. You do not behave and then assess capacity and behaviour differently, you are always assessing capacity and always using clinical judgments to decide on this.
Professor Murphy: I would like to endorse that and say that for many situations assessing capacity is not that difficult and with a set of guided questions a general practitioner could certainly do it without any difficulty and a lawyer could certainly do it without any difficulty in lots of cases. We are only proposing it should go to a psychologist with expertise in that area where it is a very complicated decision and where you might need more advanced knowledge.
Q321 Mrs Humble: So you would expect different professionals to be making decisions on the particular issue on which the competence is being assessed? So, for example, a lawyer could make a decision if you are talking about somebody's competence to make a financial decision. They may be competent to make certain decisions but not necessarily the particular decision that has arisen, so are you saying it would only be in very complex cases it would go to somebody who would be registered on your list? Who would decide that that individual is a complex case and it should go that step further?
Professor Murphy: To answer the first part of your question, yes, that is what we are saying. I think it would be very easy to set out a framework that lawyers could use and GPs could use although it would have training requirements.
Dr Dooley: In some respects something similar is happening at the moment because if you take an elderly person in a medical setting in an in-patient ward who is behaving irrationally and perhaps not consenting to treatment, the first question would be, why is that happening? They might call in a psychiatrist to do an assessment about their capacity, that psychiatrist might then call in a speech and language therapist if that person has a communications difficulty, they might call in a clinical psychologist if they had reasonable memory difficulties. So in a way this is a mirror of that. It is a cyclical system. As we develop our specialist assessment we can then feed back to the more generic services the different aspects which allow us to assess it and that will inform their practice.
Dr Zigmond: Can I take it further in two respects? I agree with everything that has been said. If one looks at the current Mental Health Act, Section 57, that clearly gives to non-medical people who are members of the Mental Health Commission from any discipline, including lay people, the duty to assess whether in certain circumstances patients have capacity and are consenting in relation to surgery for a mental disorder. I do not think we should go down the route of saying that any particular group of people do not have skills in that area because with further training and within a regulatory framework we could include a wide variety of people. The second thing is, these are supposed to be situation-specific decisions relating to capacity. Let me give you an example. Suppose I was asked as a psychiatrist to assess if somebody was capable of making a decision as to whether they should have a lobectomy (?), I would not have a clue. I do not know what is involved, how could I assess what the patient understood about what was necessary, about the pros and cons, about the adverse effects, the benefits and so on. So it would have to be, in those circumstances, a surgeon who knew what he was going to do, or she was going to do, who knew the sorts of information which the patient would require to make a decision and then be able to assess whether or not the patient was able to understand. It may be the patient could not do that by himself or herself and it would require two people or more. So the notion that somehow you can have an individual or a class of individual who can assess capacity I think is wrong. It is much more specific, just as whether the patient has a lapsed capacity is specific, so the people who would be involved in making that assessment at that time for that individual relating to that issue would have to be specific.
Q322 Mrs Humble: Accepting all of that, how does that lead into your earlier statement about having a registered group to deal with the more difficult cases?
Dr Kinderman: That was exactly what I was going to say. Here is an example, if my colleague over there were to arrest me and charge me with an offence, he would ask me if I understood the charges he was putting to me, and he would be making some sort of judgment within the bounds of his competence about my capacity. You would expect him to do that and that would be okay. If he had some doubts, he could call Tony to assess my capacity. What we are saying for the purposes of this registration, what you should be doing as health care professionals is work within the bounds of your competence, judge patients' capacity, if you think they are incapacitated about a particular issue then you would operate under general authority. If you thought they were incapacitated and the issue was of a nature to warrant registration, there should be some people who are listed with the Court of Public Protection, or whatever it is, who have specific competence to rule on the more difficult issues. In the same way that the police officer can work out whether I appear to understand what they are charging me with, if I do not appear to understand, they should call in the police liaison person to assess me properly because that is the person capable of doing it. He assesses capacity, if he cannot, he calls on a colleague who does it in a more sophisticated fashion.
Mrs Humble: That is very helpful.
Q323 Chairman: It would be interesting to watch the process of a psychiatrist assessing a psychologist!
Dr Zigmond: There are limits!
Q324 Lord Rix: I come back to advance decisions. Should the Bill stipulate that advance decisions to refuse treatment should be made in writing after full consultation, of course with the family? Would you consider it desirable for such decisions to be witnessed by a competent professional known to you, such as your GP or your lawyer if you have one? If I can add a second part to that question which I was unable to ask your predecessors here, the BMA, if you have advance refusals already down and witnessed and fully documented, does this lessen your statements of wishes about, say, where you are going to be living in your extreme old age or the sort of health care which you will receive? Does the advance decision to refuse treatment always take precedence over an advance statement of wishes?
Dr Ehlert: It is a very complex question but I will try to answer it in parts. First of all, I think it is about looking at evidence, and certainly if you have not got something in writing how do you actually prove evidence that advance decision making has been made. I would say, yes, evidence in writing needs to be made or, for example, if the person cannot write things down to have some sort of evidence in writing. Should it be witnessed by a doctor or lawyer, the issue is that some people may not want to go to a doctor or a lawyer and therefore perhaps one should consider having two witnesses who were not professionals.
Q325 Lord Rix: Indeed.
Dr Ehlert: The other issue is that perhaps one should also consider that if one were to incorporate having two witnesses who were not professionals, then you would have to look at ensuring these people would not be benefiting by the person's death.
Q326 Lord Rix: Of course.
Dr Ehlert: The other issue is of course cost. As soon as you start getting professionals involved there is a high cost. The other issue is that perhaps one should consider within a code of practice having a model living will or advance decision directive in order to set standards. Of course one could thereby take into account advances in medical treatment, actually ensuring that the person is able to renege on their original decision if necessary depending on the issue at stake in defining incapacity.
Q327 Lord Rix: What about advance statements of wishes? Are they lessened by the advance decision making?
Dr Zigmond: Could I come back to that? Could I first of all add that one of the interesting issues here is that Clause 24 is very detailed and the circumstances in which advance statements will not apply are very complex. We do not think it should have to go to a professional, it is expensive and why should you, but of course it is a bit like a will, the risks of getting it wrong and therefore your wishes not being followed are greater perhaps if you have not taken advice. I think that is as far as one could go. On the second point, clearly if there is any statement that is current made by a capacitous individual, it should override a previous statement by the capacitous individual. So while they are able to make it, then I think it is very important. If I could give an example, it might illustrate some thoughts on this. I was at one of the conferences recently and a remarkable gentleman with Alzheimer's Disease was talking about this and said he had all his life hated to have a bath. He assured us he was very clean but he liked to shower and he wanted his wife to be able to convey that at such time as he was no longer able to. It occurred to me that at that stage it may be he would prefer a bath, he does not know what he would want then. I suspect he would have to be really quite severely damaged before he was unable to make that decision at that time, and the thought of him trying to climb in a bath and someone pulling him out saying, "No, your wife says you are not to have a bath", seems a little harsh. So I think the issue is one of constantly deciding for this issue, the seriousness of this issue, is that person still able to make a decision and, if they are, then that is what must count.
Q328 Lord Rix: I have drafted something fairly recently based on a living will, which seemed to be fairly wide in its implications but actually really specific. You refer to "life-threatening physical illnesses from which there is no reasonable expectation of my recovery or of severe and permanent impairment of all my intellectual faculties together with a physical need for live-saving treatment" and then you go on to say what you want to do. I would have thought that was not being unreasonable. You are not saying to somebody, "Kill me, please, automatically", you are saying, "When those conditions are reached I request all treatment necessary to maintain comfort and dignity and relieve pain even if this is likely to shorten my life ..." and obviously I am thinking of morphine,"... and to refuse treatment aimed at prolonging or artificially sustaining my life." Would you not think that was reasonable?
Dr Zigmond: I think it is excellent. In order to be slightly devil's advocate though, supposing you have a condition which is a terminal condition and something happens which causes you pain and the only way I can treat that is not by shortening your life but by extending it.
Q329 Lord Rix: Like putting me on chemotherapy?
Dr Zigmond: In order to deal with the pain, not in order to extend your life. Would your wording cover that?
Q330 Lord Rix: I am not sure it would.
Dr Zigmond: I merely give that example to show just how difficult it is to be precise.
Q331 Lord Rix: Indeed.
Dr Zigmond: The principle, absolutely.
Chairman: As we have not got the wording in front of us, we should perhaps move on.
Q332 Mrs Browning: For those people who have a known condition which results in fluctuating capacity throughout their life, would you as professionals feel that during those times when they clearly have capacity you would feel it incumbent upon you to encourage them to take those advance decisions? Would you be pro-active in doing that?
Dr Zigmond: Yes.
Dr Kinderman: Yes.
Dr Dooley: Yes.
Dr Ehlert: One of the pointers in relation to the evidence is about registration. At the moment it would be quite difficult to actually find out whether anybody has made a living will or advance directive in relation to their health care, so therefore one should consider some sort of registration process which is accessible in order to find out whether those decisions have been made.
Q333 Baroness Knight of Collingtree: Really this is crossing Ts and dotting Is and following on something which Dr Zigmond and Dr Kinderman said. Do you think it would be good if the draft Bill actually put a specific duty on doctors and other professionals to ensure that an advance decision to refuse treatment is not leading to unintended harm and some kind of mechanism whereby unintentionally harmful decisions could be avoided or set aside?
Dr Herbert: That is covered by Clause 24, is it not?
Dr Kinderman: We had a discussion about this when we saw the question and we came to the conclusion that that is covered by the issue of what constitutes the invalid decision, Clause 24. I have not got it in front of me but it says something along the lines that if that decision was made on advice but there was something which was not foreseen by the person, and if it is unintended it was not foreseen. We thought it was probably covered by Clause 24.
Dr Zigmond: Could I add, please do not ever put on me a requirement to ensure anything. You can ask me to try and ensure, or do my best to ensure, but how I can ever ensure for certain anything, I do not know.
Q334 Baroness Knight of Collingtree: I was not so much asking you to ensure - and how I would ever ask a psychologist to ensure anything, I do not know - I was merely hoping possibly the Bill might be able to.
Dr Kinderman: Just to clarify, Clause 24 refers to circumstances which were not anticipated, and if you are talking about "unintended" that would seem to cover that.
Q335 Baroness Fookes: Basic care: do you believe that the Bill should exclude basic care from its procedures and its mechanisms or not?
Dr Herbert: No, the strength of the Bill is that it does include them under general authority because those are the sort of things which we are saying are left out.
Baroness Fookes: So you are all agreed.
Q336 Baroness McIntosh of Hudnall: This is about the duties of people in possession of lasting power of attorney. Is it your view that there are sufficient safeguards in this Bill to ensure people carried out their responsibilities effectively? Specifically, do you think that the Bill will be improved by the list of, as it were, specific provisions of duty of care being placed on people who have lasting power of attorney and a list appended of what that implies?
Dr Kinderman: In the absence of anybody else saying yes, the answer is yes.
Q337 Baroness McIntosh of Hudnall: Commendably brief.
Dr Kinderman: One of the benefits of strengthening it - and this includes cost because there is a secretariat involved - and having these things, including registration of patients as being incapacitated with the public guardian, is you have staff to do research on that and they can look to see how many of them are there, what they have written, how many would be invalid if you were to look at them as a lawyer, and you can only start to do that if you move down that path.
Q338 Baroness McIntosh of Hudnall: Can I reframe the question because I want to make sure I have understood your answer and that indeed you understood my question. It has been put to us that the Bill is deficient in that it does not specifically impose a duty of care on those who have lasting power of attorney granted to them. Do you think the Bill would be improved by that duty of care being made explicit and binding?
Dr Ehlert: Basically some sort of mechanism to ensure further safeguards potentially needs to be incorporated in a code of practice. For example, actually ensuring that anyone with lasting power of attorney is looking after the welfare of the person concerned like in terms of financial aspects. For example, one could look at having some sort of audit on an annual basis of the accounts, otherwise anyone could end up doing anything. On the other hand, there are at the moment quite significant restrictions in relation to power of attorney where the person has to go to court to give out gifts and things like that which the person might have normally done anyway, so therefore one could look to see whether the person has got, for example, a will which could be drawn on in order to look at issues of disputing gifts and things like that. I do not know if that makes any sense.
Dr Zigmond: Could I give an example of a difficulty? You have an elderly person who is suffering from a degree of dementia, which is sufficient to lose capacity in relation to where he or she should live. They are in hospital and the time has come for discharge. They have spent their whole life talking about - and they have not made an advance statement - the importance to them of staying in their home with all necessary support but the problem is they do fall over. One of the children, who is extremely caring and extremely fond of them, says, "They would be safer in a nursing home, so we want this person in a nursing home." You know the patient actually wanted to go home and you think as the doctor with the necessary support they could be maintained there. That is not an uncommon scenario and it is a very difficult one. They have given the authority to their child, quite rightly, that is what they wanted to do, and I think that anything that reminds the person with lasting power of attorney of the fact they have duties to consider that list, including the discernible wishes of the patient, would be very helpful. I do not know if that answers your question.
Q339 Mrs Browning: Could I add another twist to that which is familiar to many of us, and that is the elderly person who in their 60s and early 70s says, "If anything happens to me, don't worry about putting me in a home", but when they get to their 80s and they are falling over, they say, "No, no, no, I'm not going in there!" That is also a very difficult situation and yet they have expressly, when they certainly had capacity, expressed a different view.
Dr Zigmond: Yes.
Dr Herbert: There is a need for us all to change our minds sometimes.
Q340 Chairman: But they have the capacity at that time to say no.
Dr Herbert: I think we have to be quite clear that lasting power of attorney does not have to give you total rights over that individual, it might give you rights to make decisions in certain areas and that might be one of the safeguards you ought to have.
Chairman: I think we have reached the point now where we have been going for 22 hours but there are two areas we have not reached, and those are lessons from other jurisdictions, excluding Scotland which we have spoken about, if you have any views on that, do write to us, and also if you would write to us about resources. Can I thank you all for an extremely helpful session. If there are any other points you wish to make about things which should have been asked or things you would like to expand on, we would be glad to receive them. Thank you very much indeed.