Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

Examination of Witnesses (Questions 379-399)


9 OCTOBER 2003

  Q379  Chairman: I think you heard all the housekeeping notices that I gave at the beginning. Could you introduce yourselves, please?

  Dr Gardner: I am Gregory Gardner. I am the vice-chairman of the Medical Ethics Alliance which is a coalition of doctors representing different faith groups and Hippocratic tradition doctors. I have with me Dr Gillian Craig, who is a consultant geriatrician and an expert on issues regarding hydration of the elderly and Dr Quereschi, a consultant psychiatrist who is also an expert on suicide and the care of patients who have depression and suicidal inclinations. I am a GP and so I would be very happy to take questions on some of the general aspects of the matter.

  Archbishop Smith: My name is Peter Smith. I am the Roman Catholic Archbishop of Cardiff and chairman of the Bishops' Conference Department for Christian citizenship and responsibility. I have brought with me Dr Helen Watt who is director of the Linacre Centre for Healthcare Ethics.

  Lord Habgood: I am John Habgood. I am a retired Archbishop of York. I have a certain interest in this as I was a member of the House of Lords Select Committee on medical ethics which has I think set your agenda. I have brought with me Claire Foster who is the secretary who deals with these things for the Church of England.

  Dr Howard: I am Dr Philip Howard. I am here on behalf of the Guild of Catholic Doctors. With me is Dr Adrian Treloar, also of the Guild, and Mr James Bogle, who is a representative of the Catholic Union. I am a consultant physician with a particular interest in patients with swallowing disorders and feeding problems.

  Q380  Chairman: Best interest is a very important subject. Would the inclusion of a legal definition of best interests help clarify the legislative intent of the Draft Bill or would such a definition be unduly static and inflexible for decision-makers? How should the individual's clinical best interests be balanced against their wider interests?

  Lord Habgood: It is clear from what was said in the last session that we are in an area where nothing is certain. Therefore, it seems to me to be very stupid to define something as vague as best interests. One can have certain guidelines. For example, one can say the things which are necessary to do in order to keep a patient comfortable and produce what improvement might be possible and so on and those are the long term best interests.

  Q381  Chairman: This is central to the Bill.

  Lord Habgood: It is indeed. It is a Bill that is having to deal with imponderables.

  Archbishop Smith: Could I just add to that, I think one of the elements we would like to see—and I agree with Lord Habgood—it is going to be very difficult to get a legal definition that does not hamstring everybody. What should be included in the understanding of best interests is the health interest of the person who is incapacitated, because that is a crucial issue, we heard very much in the previous evidence from Baroness Finlay. That needs to go in there somewhere and the essential element of what are the best interests of the person concerned.

  Q382  Chairman: Under common law a doctor can meet the problem by showing that he or she is acting in the patients' best interests. Does this Bill not just add to that, it does not replace it, does it?

  Archbishop Smith: The problem is that if you have an advanced decision it seems to me that a lay person, an advocate, or whatever, can override a doctor's proper professional, clinical decision. That is a crucial difficulty we would have with the Bill as it is drafted.

  Q383  Chairman: I understand that.

  Dr Howard: Speaking as a clinician the definition of best interests must include the clinical needs of the patient. In making a medical decision we have to decide what are the circumstances, what is the diagnosis and what is the range of options available to the patient. In other words what is their clinical need? The second stage of the process is deciding what ought to be done for the patient. That is a matter of patient choice. We must not confuse what the patient needs in a clinical sense with what the patient chooses. We all know that sometimes patients do choose not to take proper medical advice. It is perfectly possible for a patient who is of sound mind not to act in his own best clinical interests. If that is true of the competent patient how much more true must it be of an attorney. They too could act contrary to the clinical best interests of the patient.

  Q384  Chairman: Would the professional be protected by this Bill if in fact that patient decided not to take the medication even though they knew it was in their best interest?

  Dr Howard: The wishes of the patient or the wishes of the attorney, as I understand it, would trump that. If the patient is competent, yes. I think the issue is if the patient is not competent.

  Dr Gardner: I would agree that the concept of best interests is open to misinterpretation and mischief. I would be very concerned that any kind of definition of best interests that feed away from clinical best interests could easily be misused. I think the legal definition by Lord Brandon about clinical best interests is a good working definition of clinical best interests, "treatment is in the best interests of the patient only if it is carried out in order to save their life or to insure improvement or prevent deterioration in their physical or mental health". We have had cases where it has been deemed in the best interests of patients to be starved or dehydrated to death. This can never be in the best interests of a patient. Leaving this clause of best interests in the Bill in a vague, ill-defined way is going to be open to abuse and misused and should be thrown out.

  Q385  Chairman: We have had evidence from the Making Decisions Alliance who represent MIND and the Alzheimer's Society and others and they welcomed the Bill and the fact that best interests is included, does that surprise you?

  Lord Habgood: May I come at that again, it seems to me when you are faced with the difficulty of making a definition quite often you can manage to define the process. It seems to me that in these difficult cases it is very hard to expect one person, a doctor, to make a decision. The concept of team-working involving the people who have care at various levels of the person in question offers some safeguard against an individual's notion of what best interests might be.

  Q386  Chairman: Are you more concerned about the process than the principle?

  Lord Habgood: The process would then need to have a clinical team making a decision in these difficult cases about what should happen rather than a decision made by an individual on the basis of a clear definition.

  Q387  Lord Rix: Would it be possible in the current draft Bill to ensure that if a clinical decision was taken by a medical team it could override advance decisions? If that is not the case, how would you see it being made possible? In other words, say I have written that I only want to be kept comfortable and free from pain but I do not want to be kept alive artificially, could you override that?

  Dr Howard: I think the Bill would mean that you could not override it. One of the problems I think of having legally binding advance directives is that they are legal instruments. Providing at the time that it was made the patient was of sound mind, they were not under undue duress—we have already heard what the difficulty in establishing that can be—and they knew even in "broad terms not scientific language", to quote the Bill, what they were about then their wishes would be frozen in that document and the doctors would have to abide by it. One of the problems that I would have as an acute admitting physician is the issue of whether a suicide note for example would be a valid advance directive. I have looked at the clauses of the Bill and I have decided that yes it would be according to the Bill. We all know that many, many hundreds of young woman in particular, do take drug overdoses. It is a very common medical emergency. Baroness Finlay mentioned the question of Paracetamol overdose. Two years ago I had exactly the same problem, and my patient also went on for a transplant. What is the doctor to do if the patient is not incapacitated but merely distressed because of life circumstances? They may have discussed it with friends and relatives, may have written down their request in the form of a suicide note and gone on to take the overdose. We know that the majority of such patients, 19 out of 20, live but regret having taken the overdose. Any clinician will tell you, any psychiatrist will tell you that this business of taking overdoses is part of the very natural history of how distressed and depressed individuals behave. They want out. They want to get out of the situation into a different environment and there are all sorts of feelings of guilt and concern about it. I know from my clinical experience that the next day many of these patients are glad to be alive. It would be a tragedy if suicide notes were deemed valid advance directives. Why do we treat them? For the reasons I have stated. We know that their views are not fixed. Indeed this is part and parcel of the way that distressed individuals behave. They want help, they want a different environment and they want to be surrounded by people who can help them. We know that but at the time that they take the overdose on the Friday or Saturday night their intention may very well have been to kill themselves and they may have thought about that for two or three weeks or even months. I think there are dangers in having advance directives which will freeze in time individuals' so-called wishes when we know in practice that they change over time. Baroness Finlay has told us in eloquent detail how when you are ill and you actually suffer the effects of disease you adapt to your circumstances . We are all quite clear as clinicians how much individuals respond to their circumstances. The resilience of our patients is really quite extraordinary when they are actually faced with difficult situations. I think there are very great dangers in fossilising patients' wishes in legally binding advance directives.

  Q388  Mr Burstow: Can I go back to the issue of best interests, that is an issue that we need to explore in a lot more detail and put to you something that has been put to us in submissions from the British Psychological Society about best interests and needing to take into account the importance of the psycho-social aspect of a person's life. Do you agree with that contention and if you do are you putting forward an argument which is there is almost a hierarchy of best interests one works through and if you are putting forward a hierarchy where do psycho social factors come in?

  Dr Howard: Again I think there is a danger in answering that kind of question in any fixed way because we deal with a whole panoply of situations in clinical medicine. What we can do and what we must do as clinicians is to give our professional judgments as to what the clinical needs of the patient are. In deciding whether or not a patient is going to be able to withstand a particular form of treatment we must take other considerations into account such as their psychological profile. Any good physician is also going to take into account the wishes and the feelings of the relatives and the carers. There are on the one hand clinical issues that have to be decided. We have the competence to make those judgments. Often of course there is not a unitary solution to a particular medical situation. There is often a range of perfectly proper and appropriate treatments that can be offered to the patient. Any good clinician is going to present those to the carers and the family and certainly take into account the wishes of the carers, the family and even an attorney. I think that the attorney should certainly be consulted. However I think he should take the role of a statutory consultee, a patient advocate, if you like, but not make the decision on behalf of the patient.

  Q389  Mr Burstow: An uncharitable interpretation of some of the material we have before us that has been submitted by Dr Howard would be that ultimately the proposition that you are putting to us is that we should trust the clinician. Is that a fair summary of the position you are putting forward?

  Dr Howard: I think one has to trust the physician because the physician is going to deal with the patient, but there must be checks and balances. We have professional standards which are recognisable. We have limits beyond which our treatment can be regarded as ineffective or even negligent. What I am saying is that in medical decision-making it is not just a question of the clinical situation it also involves other issues of a non-clinical nature which a good clinician will also take into account. As a clinician one has to define what the clinical needs are first and foremost. There must also be a standard of care below which he should not fall. He must always provide basic care to the patient.

  Archbishop Smith: Could I go back to this best interests matter, I think that my difficulty is that the Bill seems to describe best interests in purely subjective terms and it seems to equate best interests with autonomy. I do not think that is a proper way of doing it. We can all act freely but not always in our own best interests. Someone can go and drink gallons of scotch or whatever their favourite is and say "I am exercising my autonomy" but I do not think any reasonable person, certainly not a doctor, would say that you are acting in your best interests. I think while it is difficult to define legally what you mean by best interests there must be some element in that which brings into the equation the whole question of the person's interest in good health. We know older people very often refuse treatment initially because they are upset, and that came out from Baroness Finlay and again from Dr Howard. There is a classic case in the Old Testament of Elijah, who was being pursued by Jezebel and we got totally fed up, he was weary and went out and sat under a tree and said to the Lord, "take me, that is it, I am finished". He was expressing his wishes and feelings very clearly but the good Lord sent him angels and two good meals and off he trundled into the wilderness and restored himself, so to speak. I think it is a very crucial element but when you try to look at what do we mean by best interests and not to equate it simply to the fact that I can choose whatever I want.

  Lord Habgood: One factor has been left out so far is whether the incapacity is permanent or temporary. It does seem to me that unless there is a clear distinction, insofar as one can make a clear distinction here, we forget that we are dealing with two quite different moral situations. Where you have a case of permanent incapacity then somebody has got to make the decision and presumably this has to be the clinician or the clinical team. Where you are dealing with what is believed to be temporary incapacity then it seems to me that the question of best interests resolves itself into the question of how can we restore sufficient capacity so that the person can make decisions about their own life? It seems to me very odd that Clause 1(2) of the draft Bill says, "it does not matter whether the impairment or disturbance is permanent or temporary". To have that rubric right at the beginning of the Bill presumably categorising all of the rest of it seems to me to spell confusion from the very start. At the very least I would like to see that clause taken out and then specification in other parts of the Bill as to whether the difference between permanent and temporary incapacity makes a difference.

  Q390  Chairman: The Bill is based on a functional approach of the capacity at the time the decision has to be taken, it does not matter whether the impairment is temporary because it is at that point in time.

  Lord Habgood: It does, if you take Clause 23 (1)(b) which actually uses the phrase "at that time he lacks capacity". Supposing somebody who is temporary incapacitated has left an advance directive saying that they do not want treatment, and supposing that person might well recover and be able to make decisions for themselves, according to the Bill the advance directive could be brought into operation during what might turn out to be a temporary phase.

  Q391  Baroness McIntosh of Hudnall: May I just ask Lord Habgood whether he might consider it could be differently interpreted, that somebody who temporarily lacks capacity as a result of illness or injury and may recover may be in need of treatment and it may indeed be proper to give that person treatment in order to restore capacity. On the whole it is unlikely that anybody is going to use an advance directive to direct people not to recover them from temporary incapacity. I understand the philosophical point that you are making but I wonder whether in terms of the real implications of the Bill and how it would be implemented such a situation would ever be likely to arise?

  Lord Habgood: It could arise if we had Clause 24(5) in operation, where somebody can specify that they would refuse a certain type of treatment that might be in their case lifesaving.

  Dr Craig: I would like to support what Archbishop Habgood is saying about the dangers of people who have fluctuating capacity who might have written an advanced directive. There was a very shocking article in the British Medical Journal last year entitled "When Doctors Might Kill Their Patients". One of the contributors—who was a member the Medical Ethics Committee, and I would like to say I have forgotten his name—showed an example of an elderly man who was beginning to lose his hearing and beginning to lose his vision and he came into hospital confused. The implication was that here is a situation where if you do not think that it is worth living under those circumstances the doctor might take it into his head not to treat that elderly man, with the result that he dies. I think that scenario could be repeated many times over in our hospitals who are under pressure, with bed blockers and some doctors who are not sympathetic to elderly, frail and disabled people. We live in a society that is very intolerant of disability, very intolerant of disability, and we must protect these people.

  Chairman: We should move on to general authority.

  Q392  Baroness Fookes: The general authority is pretty wide as it stands in relation to medical interventions, do you think the general authority should be restricted to the particular categories of medical intervention?

  Dr Gardner: I think it should be restricted to professionals acting within their own field of expertise. I do not think that it is appropriate for non-clinicians to be making effectively clinical decisions, it is not appropriate for proxy decision-makers to be making decisions about what is in the best medical interests and to be able to override medical decisions in that way. That is very, very dangerous.

  Q393  Baroness Fookes: Is that the view of all of you?

  Mr Bogle: Can I say I am a barrister practising in this area of medical law specialising in subjects relating to mental capacity. This was an issue that arose when the matter was debated by the Scottish Parliament in their equivalent Bill, Adults with Mental Incapacity (Scotland) Act. In Scotland the law is slightly different because there was some confusion or doubt about what general authority there was. In my view here in England it is much less unclear, to put it in its positive form, it is clear. I am not quite sure if it is necessary to redefine the general authority. I note in the evidence given before the Committee by the Scottish Law Society they were concerned about the wideness of this particular section. In Section 6(1) it says, "it is lawful for any person to do an act when providing care for another person", it is not restricted to medical practitioners, it seems intended to include those who are running nursing homes, and so on. More particularly it is a pathway, I would suggest, as the widening out of best interests under section four is a pathway to extend best interests beyond clinical best interests to non-clinical quality of life criteria so that the framework of advance decisions and lasting attorneys can be made to work. In our submission lasting attorneys and advance decision, which we will come on to shortly, go too far in that they require this broad general authority and they require non-clinical criteria to be superadded to the existing clinical criteria.

  Q394  Chairman: Is this to protect the situation? At the moment I am serving on a protection order as a best friend, I help somebody with dementia. I have no legal protection at all and I am taking decisions on her care. The Bill is intended to give me legal protection by statute because at the moment I have to rely on the common law.

  Mr Bogle: Indeed but it goes too far in so doing. In the same way we would say advance decisions and more particularly lasting attorneys and deputies—bear in mind that deputies will be appointed by a court not by the patient and are likely, as in the case of the Scottish Bill, to be a chief social worker and not a relative or a friend as in your situation. What, in our submission, would be better and would answer not only the queries that have been raised by the change in the law but would probably meet the agreement of most of the people who have been consulted is to have a framework of statutory consultees and/or patient advocates—a term which is now used quite often—rather than a very precisely defined term of attorney, and we will come to that in due course, because an attorney stands in the shoes of a person from whom they have that power of attorney. That is I would submit and suggest, not quite what is desired in these circumstances. What is desired is somebody who will be consulted and if they are not consulted there should be sanctions. To go beyond that you then have to have this very wide general authority.

  Q395  Chairman: How would I be protected in the future under this Bill which I am not at the moment?

  Mr Bogle: The problem is not the protection of yourself because you may or may not be protected under this Bill.

  Q396  Chairman: I am, under 6(1).

  Mr Bogle: You are taking a sledgehammer to crack a nut. You can be provided with protection in the circumstances that you are without having to broaden out the general authority or the best interests criteria to the extent that has been done in the current draft of the Bill. The reason that has been done is because if you are going to have an attorney making a decision standing in the shoes of a patient (and I have to query to what extent you can alienate a patient's autonomy to a third party, but I will come on to that) then in order to achieve that you have to widen out the general authority. If you restrict the scope of these proxies being consultees or patient advocates who must be consulted (on pain of sanctions against the health care workers failing to do so) but do not actually make the decisions (and bear in mind they could make clinically negligible decisions for which they would not then be responsible) then you would not have to widen out the general authority so far. In the circumstance that you adumbrate in my submission you would still be protected but you would not have taken a sledgehammer to crack the nut.

  Q397  Baroness Fookes: I am far from clear on this, there are a whole range of medical interventions from the very minor to the very major are you suggesting that somebody who acts under general authority should not be permitted to allow a tooth to be taken out which is hurting the person who does not have capacity, or some other very minor intervention as opposed to something of very major significant like a heart transplant. I am not clear where you think the line should be drawn.

  Mr Bogle: In my submission the line is drawn adequately by the current law save that there must be or needs to be certain improvements to address the kind of problems that Lord Chairman has adumbrated and also other problems, for example those adumbrated by someone who has given evidence to this Committee who had the care of a mentally ill patient. I think particularly parents who are not consulted adequately who are overridden by carers in a way that carers do not necessarily intend but because the parent have been insufficiently empowered and feel they have been left out. That is a very area different scenario to the one that I have pointed to. The feeling is that deputies under this Bill—and the power of the appointment deputies will exercised by the court—will be parents with mentally disabled or mentally handicapped children or adults under their care. Whereas the scope of Bill, particularly if we look at the Scottish experience, would appear to indicate that they are more likely to appoint social workers in those sort of circumstances, which may or may not be common, rather than parents or relatives. I would suggest this may be rather common in some circumstances. That is a very different scenario from one that those parents envisage. Again you are using a sledgehammer to crack a nut. You have under the existing law in the scenario you adumbrated, sufficient power, empowerment and protection so that the patients that you are concerned about will receive the treatment that they require because the doctor is required, whilst they are incapacitated under the existing law to treat that patient in their clinical best interest until, if it ever happens, they return to capacity. When they return to capacity they then have the general common law right that every patient has to refuse treatment for a good reason or for any reason. When they are incapacitated as the current law stands they must be treated in their best interests. In the scenario you adumbrated there is sufficient protection under existing laws. The position that has not been provided for is the one that the Lord Chairman points to and some organisations point to, that is where they have a mentally disabled or a mentally ill person in their care and they are not medically qualified—they are a relative or a parent—and they would like to feel they have more participation in the decision-making process. In my submission that could be done adequately with a system of statutory consultees and patient advocates. To use the system of attorneys is to go too far, it is going to give them the power to require treatments to be withdrawn by doctors. You then put doctors in an invidious position They go into their wards and there, perhaps, sitting at the end of the bed is a person with power of attorney who can order them to withdraw treatment even though it could be clinically negligent to do. That is why I say this is taking sledgehammer to crack a nut.

  Chairman: We have your submission but we only received it today, we have not had a chance to read it.

  Q398  Mrs Humble: All of your answers have been concentrating on a medical model and references to the individual concerned in this Bill as being patients. The point surely is that there will be many circumstances where they are not patients and we are not talking about the medical model. The general authority applies to people who are making decisions on behalf of those who are deemed to lack capacity in settings other than a medical setting. For example I am not even talk about nursing homes, there are many people with very profound learning disabilities and indeed physical disabilities who are in their own homes, in the community, often in a supportive setting with carers going into look after them. The points that have been made to us about the general authority is that it is necessary to broaden it out to include all of those people because they are the people who are making day-to-day decisions, not to do with operations or tooth extraction but to do with basis decisions about the personal circumstances of that individual, about their social care needs, and also financial needs. Surely the general authority should be there to cover those very, very large numbers of individuals who are providing that support and making decisions for people who lack capacity to do it themselves?

  Mr Bogle: At the risk of hogging the evidence, under the Enduring Powers of Attorney Act 1985 you already have the possibility for power to be given to somebody to act on behalf of the incapacitated person to make financial decisions.

  Q399  Mrs Humble: Not social care decisions.

  Mr Bogle: That is right. That is where the lacuna is. That is where the gap needs to be filled is. But this goes very much further than that and moves into the whole area of medical attorneys and medical proxy decision-makers rather than the situation you outline where I agree there is a lacuna and where very usefully there could be some change in the law to give a little bit more authority to those who currently act on behalf of a mentally incapacitated person other than making medical decisions. This goes very much further than that. My concern is, and I suspect some of the medical practitioners here are concerned about this too, is how that will impact on clinical practice and the delivery of health care services to patients and individuals in this country. It is taking a sledgehammer to crack a nut, as I have said. There needs to be a filling in of the gap, if you like, the lacuna without having to go to this extent. The whole ambit should be drawn in so that we do not end up with the unintended consequence that doctors are being obliged on pain of severe sanction to withdraw treatments that they know for clinical reasons should be given to their patients.

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