Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

Examination of Witnesses (Questions 260-279)


8 OCTOBER 2003

  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 must be consulted before the decisions are written down and should they be witnessed by a competent professional—somebody who knows you, such as your family doctor or your lawyer? Also, as a supplementary to that, how would you deal with advance decisions—living wills—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 something which was not in the direct interest of the patient, but might be in that patient's wider interest, for instance, an intervention was going to be of benefit to his or her family, might be construed as being in the patient's own best interest. I am sorry that is a very complicated sentence but it is a rather complication thought. I am concerned about the possibility that you are moving the idea of best interest slightly away from the patient's own interest and towards the interest of others connected to the patient rather.

  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.

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