Taken before the Joint Committee on the Draft Mental Incapacity Bill
on Thursday 9 October 2003
Carter, L. (Chairman) Mrs Angela Browning
Knight of Collingtree, B. Jim Dowd
Witness: PROFESSOR THE BARONESS FINLAY OF LLANDAFF, a Member of the House of Lords, examined.
Q341 Chairman: Can I thank you for attending? This session is open to the public and it is being recorded for broadcasting. There will be a verbatim transcript of the evidence which will be published in the report and you will be asked to check the text of the transcript for accuracy. We would ask for that to come back within seven days. If there is a division in the House of Lords, I will have to adjourn. There should be a note of the relevant interests of Members of the Committee on the table. Members of the departmental and Bill team are present as observers. If we are not able to reach any of the questions, we are happy for you to respond in writing or make any other points which arise from the evidence. We are not here to write a White Paper on mental incapacity; we are here to report on a Draft Bill and that is the reason why the questions are structured around the structure of the Bill. Would you like to introduce yourself?
Professor the Baroness Finlay of Llandaff: I am Baroness Finlay of Llandaff. I should declare I am a past chairman of the Association of Palliative Medicine in Great Britain and Ireland and I currently hold an honorary chair at the University of Wales College of Medicine in palliative medicine. I am a consultant physician in palliative medicine to the Velindre NHS Trust.
Q342 Chairman: Does the language which you propose in the amendment which you tabled to the Patients' Protection Bill significantly differ from the comparable text of the Draft Bill which we are considering?
Professor the Baroness Finlay of Llandaff: I am most grateful to the Committee for inviting me here. I rechecked the wording of the amendment and I had thought that we had used the wording as had been proposed in the draft. I am sorry if I have missed something. I had understood that we had used it because I had understood that therefore if the wording came in and was different the previous Patients' Protection Bill would simply be referred to and that change would supersede the wording in the Protection Bill. It was for that reason that we tried to be completely compatible. The only change in the wording related to the narrow application in the Patients' Protection Bill and the wording in the Draft Mental Incapacity Bill is that the latter has broader wording in one line.
Q343 Chairman: What you appeared to do with the amendment to the Patients' Protection Bill was to lift the faults of the wording out of the draft and put them into that one?
Professor the Baroness Finlay of Llandaff: Yes, that is correct, for the very important reason of compatibility and avoiding confusion.
Q344 Baroness Fookes: You will know that under the Draft Bill capacity is regarded as decision-specific. Are you affected in any way by patients who need palliative care whose capacity may fluctuate a little or a lot? Could you tell us about that?
Professor the Baroness Finlay of Llandaff: I have been very concerned because capacity fluctuates very rapidly in patients who are extremely ill and also because it can be very difficult to judge capacity. If I can give you two specific and very common instances, one is where patients have been anxious, which is understandable because they are facing dying, and where the benzodiazepene group of drugs such as Medazepam are used to remove the churning drive of anxiety without sedating the patients so they can still function but they are relieved in part of this desperate feeling of anxiety, butterflies and churning inside. With some of those patients, you can have a conversation and they appear to understand everything that is said and have recall. The following day they have no recall whatsoever of that conversation. It may have been a few hours later in some patients. Another situation which arises is where patients' calcium levels go up and that occurs in about ten per cent of all cancer patients. They become confused. That is a gradual onset and the outset is difficult to diagnose. They may appear to be arguing rationally but when their calcium has been brought down and is treated they then are behaving differently and they have no recall of that previous conversation or the direction that they were trying to give in expressing what they wanted. Also, they may completely change their mind which is a terribly important situation for the clinician. The difficulty is in judging whether they have capacity or not because at any one point in time the conversation appears to be logical and consequential. The issue of recall is impaired. Those are the two common situations. There are lots of other situations which arise, particularly with patients on steroids where the steroids may have created a very mild steroid psychosis which can be difficult to diagnose and just presents as emotional immobility. Again, their thinking and perception are distorted.
Q345 Baroness Fookes: How do staff cope with these difficulties which you have outlined very graphically?
Professor the Baroness Finlay of Llandaff: We cope with difficulty and with a fair degree of fear and dread, trying to ensure that the patients are given choices that they can cope with but being aware that the person in front of us, as they are presenting, and the person that they might present to us tomorrow or might have presented to us yesterday is different. If this is somebody who you have not known for many weeks, months or years, it can be difficult to know which of those presentations truly represents the person as they were previously. The other difficulty is that people change anyway as they go through their lives and their illnesses. The situation in which somebody is deemed to have been quite impossible to cope with, should it arise, when it arises, they cope amazingly with and have a different perception and interpretation of. If I may illustrate that point very briefly with a clinical example, a lady I had said that the worst thing that could happen to you would be to have a spinal cord compression and be paraplegic. She dreaded that more than anything else. Sadly, as happens all too often, the single thing that people dread the most is the thing that does happen. She developed a paraplegia. She did not respond to radiotherapy. She was devastated. I was devastated, having to tell her. Some weeks later, she said she never believed that life could be so rich and that she could find so much meaning in life and being confined to a wheelchair was relatively trivial compared to the total disaster that she had contemplated from that scenario. She said she was noticing the daffodils coming up in spring which she had never noticed before. She was able to receive care from her husband which perhaps her pride would not have let her do previously.
Q346 Baroness McIntosh of Hudnall: May I take you back to the point you were making about capacity that is caused to fluctuate by medical intervention? You describe a situation where the outcome of that intervention appears to be unpredictable. That is to say, somebody who is in one case is then given certain drugs; is then in another case but that case is not predictable. What I am hearing -- and I would like you to correct me if I am wrong -- is that you cannot predict the effect of that drug sufficiently to know whether person X in receipt of those drugs does or does not lack capacity. Is that the case?
Professor the Baroness Finlay of Llandaff: In essence, I would agree with you. The difficulty is that you can say that that is a predictable side effect, but you cannot predict in a person specific way. Steroids are a classic example. You know a steroid psychosis is a risk but you cannot look at somebody and say that they are particularly at low risk, although you might be able to say, based on past experience, they are particularly at high risk.
Q347 Baroness McIntosh of Hudnall: In the case of the drugs that you were describing that you would prescribe in the case of acute anxiety, the desired effect is the relief of anxiety?
Professor the Baroness Finlay of Llandaff: Yes.
Q348 Baroness McIntosh of Hudnall: The actual effect is some loss of capacity to understand?
Professor the Baroness Finlay of Llandaff: A secondary effect.
Q349 Baroness McIntosh of Hudnall: Secondary but it does not occur in all cases or it does occur in all cases but in varying degrees?
Professor the Baroness Finlay of Llandaff: I do not think anybody has systematically, carefully assessed the degree to which capacity is impaired using a battery of tests. There was some important work done I think in Canada where patients who were thought to be competent were repeatedly tested. The more that you tested them, the greater the deficit in capacity. The problem is that if you use a blunt test or assessment and not a sensitive assessment they may appear to have capacity. That is the catch for the clinician.
Q350 Chairman: Do you know if in Canada they needed the consent of the people to take part in the research?
Professor the Baroness Finlay of Llandaff: You would always need consent to undertake any research.
Q351 Chairman: In Canada? Do you know that?
Professor the Baroness Finlay of Llandaff: Yes. I apologise to your Lordships. I tried to get the reference to this before coming today and I have a colleague in liaison psychiatry tracking it but he could not get back to me before I came today.
Q352 Mrs Browning: Is there very much difference between this particular patient you have described and, say, the elderly and confused before they reach the stage where a doctor has diagnosed dementia or Alzheimer's? If you look at that group, they too have their good days and bad days. They have short term memory loss and it is difficult to know when you have a conversation on a good day whether or not they will remember it the next day. Are they not all covered by this proposed legislation and would not the consequences be the same for a wider group than the one you are mentioning?
Professor the Baroness Finlay of Llandaff: I would agree with you that it would apply to anybody with mental illness.
Q353 Mrs Browning: Medicated or not?
Professor the Baroness Finlay of Llandaff: Medicated or not. It is not the drug; it is the disorder in their physiology from their illness. You would see people with a urinary tract infection become quite confused as a result of that infection without any drugs. The difficulty in patients who are terminally ill is that time is so short. They are already so ill and therefore so vulnerable that a decision you take may make the difference between them continuing to live or their life being foreshortened in a much more dramatic way than in some of the other patients. Patients with Alzheimer's quite often are physically remarkably strong, despite the mental impairment, but these patients are physically very severely impaired and often in a very fine biochemical balance. An example would be patients in renal failure who will feel absolutely terrible and may feel very clouded. In assessing their ability to take decisions you should always veer to the side that they are competent because it is astounding, if you take care to communicate with people, how much they are able to take decisions. It is a long, slow, complex process.
Q354 Lord Rix: Would you say that all people in need of palliative care, most or some, a few, have changing capacity?
Professor the Baroness Finlay of Llandaff: No, I would not say "all" but I do not think this has been systematically researched across a population with advanced disease as their deaths are approaching. Until that is done in a really systematic way, I do not think I could confidently give the proportion. The difficulty arises for a clinician particularly where the family are in dispute perhaps amongst themselves and also in dispute with the clinicians over a patient's wishes or over their ability to take a decision. That is sadly a not uncommon occurrence. Where a family's views differ and carers' views differ, it can be very difficult to know who really understands.
Q355 Huw Irranca-Davies: In your correspondence to the Committee, you raise one particular concern in respect of fluctuating levels of competence and it is in respect of the legally binding advance directives and what impact these will have. Could you expand on that and give some examples of the difficulties you see with those?
Professor the Baroness Finlay of Llandaff: Some of the concerns are whether this was truly their wish, made completely voluntarily, free of any influence. When they wrote their document, did they have a degree of depression that had not been assessed? Were they highly emotional at the time and therefore feeling in despair? A person who feels that they are a burden to others will have a much blacker view than a person who feels confident and secure that the others around them love them. Sadly, it is only too common for patients to feel when they become ill that they are a burden, either to their families or indeed to society, through deficits in care. I am concerned that that can influence their thinking. The other problems relate to when was it written and, although it was meant to be specific to a situation, it is relatively rare to really be able to envisage how you would feel if that situation arose. In the example I gave of the spinal cord compression, that lady had written an advance directive saying that she did not want any treatment to prolong her life prior to the spinal cord compression arising. When she developed a chest infection which was life threatening, I went and discussed with her whether she did want antibiotics. Some of my colleagues thought that that discussion with her could be deemed to be burdensome and interfering because they were saying that was her advance directive and that is what we have to stick with, but when I spoke to her again she said, "I want antibiotics this time. I think the next time I will not want them." It is a feature of people who are suddenly facing the reality of their dying that they could not preconceive how they would feel at the time. That is also a situation that one sees in people who are very seriously ill.
Q356 Baroness McIntosh of Hudnall: What you are describing there is somebody who does not lack mental capacity, a patient who, within the terms that we are discussing, is able to make a choice. Had that patient been in exactly that same condition physically but with the advance directive and without capacity to have the discussion with you which she did have, you with your colleagues would have been obliged to follow her advance directive. What do you imagine you would have felt in that situation faced with that reality?
Professor the Baroness Finlay of Llandaff: When I went to renegotiate with her, she was on a lot of medication of different types. She was not medication free. There was even a question as to whether her capacity was impaired or not. In the principle of veering towards capacity being present rather than not present, for that decision to be taken, that influenced it. I would have felt quite uncomfortable because the advance directive was made in a situation and a scenario that was very different to the one that she found herself in because a lot of things had changed in the world around her. Her relationship with her husband had changed a lot through the course of her illness, so her perception of her role within that relationship was very different. She had gone from being a fiercely independent woman to being able to accept dependency far beyond the way that either she or her husband would have conceived previously. That is where I have a concern with the concept of personhood, whether the person in front of you now has changed so much from when they wrote the advance directive, because even ordinary life experiences change us.
Q357 Baroness McIntosh of Hudnall: The Bill provides for circumstances to change. It does not specifically provide for personhood to have changed. Do you believe that the language it uses does not cover that?
Professor the Baroness Finlay of Llandaff: My biggest concern is that the language does not specify voluntariness. If I am teaching about consent, one of the main principles is that it is voluntary and free of any type of coercion. I am concerned as to how you would know with an advance direction given to you that it was truly free of any coercion through emotional or social circumstances or whatever.
Q358 Chairman: Would that still apply if the advance directive had been legally witnessed by a doctor or a lawyer?
Professor the Baroness Finlay of Llandaff: With all due respect to lawyers, I am not sure that they are very good at assessing the subtlety of someone's emotional state and, with all due respect to my medical colleagues, there are remarkably few who are good at that. People in liaison psychiatry are few and far between but are probably the best trained to really be able to assess issues. The other problem is that the patient has to feel very safe in a very mutual environment to let you know if they have felt coerced. You only have to look at how difficult it is for people to admit to having been abused, even though they were aware that their life may have been threatened. If they are not in a safe environment, if they feel vulnerable, and if the person who has put some subtle pressure on them is responsible for their care, they are very vulnerable because they may make their situation worse by speaking out against a person who is a carer. A situation which struck me hard was to hear about Mr Soffra who was murdered by one of his carers, his male nurse. He was a very wealthy man and was being cared for by health care professionals in a group and a team. This was meant to be done for personal gain and it all went terribly wrong. That is an extreme example but there is a worry about very subtle pressure and coercion and personal gain.
Q359 Mrs Humble: I am a little concerned at your comments that your colleagues saw your intervention to speak to your patient as being unnecessary and inconvenient. One of the dangers therefore is that with formal advance directives and especially advance refusals for treatment, particularly if enshrined in the Bill in the way that is outlined, other doctors will assume that, because it is a legal document, they do not need to address the situation again, even though the Draft Bill does talk about change of circumstances and therefore is assuming that there will still be a fresh assessment of capacity. Each of the assessments is for an individual set of circumstances. How can you get round that? Do you think it would be vital that we have a detailed code of practice so that clinicians do make sure that they are asking that question again about a person's capacity, especially given the context of a lack of a detailed process within the Draft Bill? There is not a detailed process that an individual has to go through in order to determine capacity. As a clinician, how are you going to deal with that? How can I ensure that, if I am the one who has made an advance refusal ten years ago and I do not want it any more, I have a doctor like you looking after me rather than one who will not ask me again?
Professor the Baroness Finlay of Llandaff: There are two thoughts that come to mind. One is how long ago was it made and that is a huge problem because so many things may have changed in ten years. If it has been lying around at home and you have a relative who stands to gain from your death, if your life insurance policy expires in six weeks' time and they know that is in the drawer and you have not torn it up, they may run in with it and the clinician is then faced with being presented with a document that appears to be completely valid. I think I would like to see the responsibility of renegotiating an advance refusal prior to it being enforced. Advance refusals are very helpful for communicating with patients. It is terribly helpful as an idea of what patients want. My concern is that they are legally binding and then you may have to sit back and watch something happen that you just feel terribly uncomfortable with.
Q360 Mrs Humble: Would doctors feel threatened by legal action by relatives if the advance refusal was seen as being legally binding and non-negotiable?
Professor the Baroness Finlay of Llandaff: I fear that they would, yes. The scenario of somebody brought into casualty already ill and the relatives coming in waving an advance refusal in your face is a real life scenario.
Q361 Mrs Humble: Unless doctors know that they can re-examine it because of the change of circumstances?
Professor the Baroness Finlay of Llandaff: It is not only can; I am concerned that it should be in order to ensure that patients are not denied treatment that could not only be potentially life prolonging but, more importantly, could improve the quality of life in the time that is left.
Q362 Baroness Fookes: Does that lead you to suggest that there should be no legally binding directives and that they should be advisory?
Professor the Baroness Finlay of Llandaff: My personal choice would be that they were always advisory but case law seems to have taken us beyond that point already.
Q363 Lord Rix: Could you think it possible for an advance directive to be written in such a way that it would allow for last minute adjustments, if clinical methods or modern drug methods had changed or whatever? Do you think it would be possible to write that the wishes of the patient were clearly expressed but they were not absolutely legally binding to pull all the plugs?
Professor the Baroness Finlay of Llandaff: The difficulty is that you cannot foresee every circumstance that may arise. Therefore, to try and write something for every circumstance that might arise would mean such an enormously complicated document that it would become unworkable. The reality is that patients are seen in the context of busy services that are under pressure. They are not seen in the context of services that have an infinite amount of time for each individual. They also are seen in the context of services staffed by people who are often very young, particularly on the nursing side. The average age of nurses on the ward is very young, even the senior nurses. My concern is that the fear of litigation by relatives will outweigh the courage to renegotiate and stand by what the patient has said. The difficulty is that once the patient is dead they cannot come back and give evidence on your behalf. To do things like tape record conversations and so on is just terribly burdensome and skews communication terribly, is frightening and would be cruel.
Q364 Mrs Browning: What you have been telling us has opened up many areas that I had not focused on. Yesterday, when we were talking to the BMA and psychiatrists, we were talking about patients who would have fluctuating degrees of capacity because they had a particular type of illness with peaks and troughs. I asked them, "When they are more stable, would you be actively encouraging them to write out one of these advance directives? Would you be proactive?" They all unanimously said, "Yes." I am concerned about this because if you look at the population as a whole there is a huge number of people who do not make a will and for many of them it is not that they do not have anything to leave; it is that they cannot face their own mortality. They cannot deal with it. I am concerned that the trigger that would encourage people to do this would be something promoted by somebody else or would be done under what you describe as circumstances where they were very emotional because perhaps there was a constant health problem or some sudden change of circumstances. I am not sure how we are ever going to judge, in looking at what is proposed on the face of this Bill, not just the timescale of when it is written but how rational was that person? How much under pressure were they when they wrote it, because why would anyone think to write it unless they had a particular purpose for writing it because of a certain set of circumstances? That set of circumstances in itself could probably influence the motivation to do it anyway.
Professor the Baroness Finlay of Llandaff: I think you have hit on the nub of the problem. I am surprised if the BMA said they would always do it because if you look at discussions about cardiopulmonary resuscitation, which is about advance direction with patients who are very ill in hospital, it is an incredibly difficult thing to do. Within my own trust, we have been trying to develop a policy on it which is not offensive to people. However careful we have been, there have been some patients who have been absolutely terrified when we are telling them that they are about to die.
Q365 Mrs Browning: In fairness, it was the psychiatrists who were enthusiastic.
Professor the Baroness Finlay of Llandaff: The problem relates to how do you know that the thing that is brought in is really what the person wanted? How do you know it was not superseded by another one? How would you ever discover if another one had gone in the shredder? How would you know about the conditions under which it was originally made and the proof? You have to take that in the context that a patient's complaint or a relative's complaint takes such an inordinate amount of clinical time and diverts you away from the job to be done to such an extent that it is every clinician's nightmare. The most difficult complainants are usually relatives after somebody has died. I can think of an instance at the moment where a patient was adamant that no information was to be handed to the family. The family are now complaining bitterly that they did not have the information and I think will dispute that that really was the patient's wishes, even though there is good documentation in the notes. The tensions that arise between the family members and patients I do not think should be under estimated. It gets even more complicated when you have other people coming in and giving care. Things like jealousy and guilt are very powerful emotions.
Q366 Chairman: If we had the smart card with all the medical information on, this is the sort of information which could be on there to show if there was an advance directive and, in that form, it would be updated from time to time, I imagine.
Professor the Baroness Finlay of Llandaff: I am a bit of a fan of the smart card. I think it would be helpful. At least there would be a single place where it was logged. It be helpful if there was a single place where it was logged with a GP and I think it would be helpful to know that that was renegotiated. It would be helpful to know that the thing whipped out of the drawer by a relative was not valid. I would prefer to see the general practitioner as the custodian of the advance directive for a patient because they have known that patient when they were well, even if they have not known them very long because they have not had many conversations with them. They may be more reliable than a relative.
Q367 Jim Dowd: It is not smart cards but not very smart cards that cause more trouble. Are we losing sight of the point Baroness McIntosh was making on the status of the advance directive? As long as the patient has capacity it does not matter what they wrote ten years ago, five years ago or five weeks ago, because they can automatically override it, until such time as they do lose capacity. At that stage, with all the caveats and doubts that you outline about changing circumstances, surely it is the only guide you have to take you through that path? Do you fear being pursued by relatives because you did or did not carry out such a move?
Professor the Baroness Finlay of Llandaff: If the question is do I ----?
Q368 Jim Dowd: I mean the legal profession generally.
Professor the Baroness Finlay of Llandaff: I am aware that it is a major distractor from the business of clinical care and wears people down. I have seen clinical colleagues who have been on the point of resigning, who have become profoundly depressed as a result of a complaint. I do not think the devastating impact of a complaint or a lawyer's letter on the clinical services should be under estimated. As I was saying previously, assessing capacity is very difficult and it can be relatively easy and dangerous to assume that somebody does not have capacity for that decision and not give them the opportunity for a lucid interval or give them the opportunity to communicate. You rightly refer to the problems of communication. A patient who has tremendous difficulty communicating may be able perfectly well to make a sound decision but unless people have to take the time to struggle with them, to establish that communication, they will be judged by everyone looking at them to lack capacity. If you take patients with motor neurone disease, who are dependent on a light writer to communicate, when they can no longer operate their light writer, they have all their faculties. They can hear and understand and process. It would be very easy to deem them to not have capacity for decision. It may well be that they do not want any further treatment and they have that specified, or it may be that they have changed their mind and they would like to have, for instance, a gastrostomy done which previously they had declined or vice versa. I am concerned that the difficulties in communicating with people the subtleties involved are very hard to judge in law. Whilst it rightly says that you must assume capacity, I can see the scenario where people are labelled as not having capacity when they would have capacity for that specific decision if somebody took the trouble to spend time carefully renegotiating with them their advance directive, given the scenario now.
Q369 Jim Dowd: The presumption is that the advance directive is done in full knowledge when they have capacity, rather like wills. The first words of most wills are "I, being of sound mind". The presumption is that this is entered into by somebody fully understanding the consequences, without duress or coercion.
Professor the Baroness Finlay of Llandaff: What I was saying previously was however much you make it out for a situation that you think will arise the situation that does arise is usually slightly different to the one that you had envisaged at the time of making it.
Q370 Jim Dowd: You know that at the time of making it. You must if you can state it now.
Professor the Baroness Finlay of Llandaff: With due respect, I am amazed how often people think they will react one way when something happens to them and how very different their reactions are.
Q371 Jim Dowd: People are not the best judges of their own interests?
Professor the Baroness Finlay of Llandaff: I am not saying that; I think they are not the best judges of their future state of mind and reaction to situations.
Q372 Chairman: Would the Bill make these very complex decisions which you are describing better or worse?
Professor the Baroness Finlay of Llandaff: If you want an overall, global judgment, I would say something has to be done. Therefore, a lot of what is written down here is impressively good, if I can put a value judgment on it. I am not wanting to throw it out but my main concerns relate to the voluntariness of the principle. The wording did not come up here and I was looking for it.
Q373 Baroness Knight of Collingtree: I think we all ought to place on record our gratitude that at last we have someone before us, giving us evidence, who is actually at the coal face, dealing constantly with patients, day after day, and not merely the head of a trade union representing doctors because the difference in the evidence has been quite striking. I, for one, am most grateful to you for coming. Whether you have been able to go right through the Draft Bill I do not know but in your judgment if it became law what do you think would be the most significant positive and negative consequences for medical practitioners like yourself working all the time with terminally ill patients?
Professor the Baroness Finlay of Llandaff: Thank you. The positive is that there is some clear guidance formally written down in one place rather than a whole collection of different papers and different people's interpretation from different sources. We all know there are slightly conflicting words in the guidance that is currently out there. The best interest principle in here is very helpful because it would allow you to intervene more than people do at the moment. If I may go back to the confused hypoglycaemic who is very disruptive on the ward and worried about their safety, they just need a little sedation to tide them over. They will accept having hydration because they are so thirsty without their calcium but they refuse anything else. They refuse to have anything by injection. At the moment, you cannot give them a small dose of something like Haloperidol which they could take orally because you would be giving them a drug without their consent to it; but working in their best interest they would be much safer if they would calm down a little because by calming them down you may be able to negotiate the next step with them better and that would be in their best interests. That best interest principle is helpful. You also asked me about negatives. My biggest concern relates to relatives who are in dispute, who are pushing for interventions which may be futile or harmful or are pushing for interventions to be withheld. The patient is extremely vulnerable, being under emotional pressure and duress. I think there is also an issue for patients when they are facing their own dying. This goes back to the advance directives. They are very often worried about how their family will remember them. They do not want their family to have bad memories of them. Reconciliation within the family or the people they love and perhaps have been trying to reach out to emotionally for many years, where there has been a rift in the family previously, puts a very large emotional burden on people. That works against anything being renegotiated for mothers, particularly in relation to their children. They may be hesitant to renegotiate a situation which seems to go against what they have previously said to the family.
Q374 Baroness Knight of Collingtree: In the light of something Lady Finlay said, I may have been given the wrong information here. The words were that ultimately the doctor has the right to make the final decision -- that is to say, about the care and the drugs for the patient -- in the best interest of the patient. When you were answering me, you mentioned that you sometimes had a situation where you would like to give a patient a certain drug and could not. That did not seem to sit rightly with the information I had. I wondered whether I was wrong and whether it is true that the doctor has the right to make the final decision.
Professor the Baroness Finlay of Llandaff: There is a fine line always between saying that this refusal is clear and competent and saying that this refusal is in part clouded and in part incompetent and in part competent. If the patient is unconscious, it is easy. If the patient is flagrantly confused, it is easy. If they have an advance directive saying that in the event of them becoming confused they will not want any treatment, it becomes very difficult because if they stated that if they were confused and they are confused you know that you can do something to calm that confusion down. You know that you can treat it; you know that you can reverse it but you are faced with a document which is deemed to be legally binding which says, "If I was confused I would not want to be treated." Most lay people and most patients are terrified rightly of becoming confused and losing their dignity. Very few people are aware that a lot of causes of confusion are reversible.
Q375 Mrs Humble: This is a philosophical question. One of the things that has come out in all the evidence that we have been hearing and all the submissions we have had as a Committee is the fact that many people's value systems and beliefs do vary. How can we in this Draft Bill marry up respecting a person's wishes on the one hand and respecting life on the other?
Professor the Baroness Finlay of Llandaff: Some people do not want to live. They commit suicide. They take an overdose. The difficulty is that when they have a little bit of time sometimes they change their minds. I can illustrate this with a clinical example of a patient who took a massive overdose of Paracetamol. They did not want to come to hospital but were persuaded to. They flatly refused any intervention or any treatment. Two psychiatrists who are colleagues of mine spent a lot of time negotiating with him for several days and explained absolutely everything that might happen to him in graphic detail and he was adamant he wanted no treatment. They warned him of every scenario, including coughing up blood as he started to haemorrhage to death. When he started vomiting blood, he changed his mind and requested treatment. He ended up being transferred to King's for a liver transplant. That illustrates the difficulty of patients' belief systems and what they really think they feel and what they do when they are facing the final buffers and the very end of their life. The difficulty too is where you have other belief systems and structures that come in. At the end of the day, I would return to a statement I have made on the floor of the House that the law has to veer towards protecting life and has to work to preserve life but life that has quality. Therefore, you also have to preserve life and respect death when it is coming, but I worry that there is a tendency to almost be too accepting of death as an inevitable outcome with some diseases and some processes where, although it is inevitable, a little bit more time might be very valuable. Without an onus to renegotiate always and to relook at a situation clinically as it arises, it is very, very easy to accept perceptions and value judgments that were previously made. I do not know how you can enshrine that in law and I worry about the law trying to cover all eventualities in society because I do not believe it ever can. It just simply has to work to protect the most vulnerable and the majority.
Q376 Mrs Humble: One of the issues is not the case where you can renegotiate because that person would still have the capacity to deal with that. It would be the case of somebody who had, for example, made an advance directive to refuse treatment and appointed somebody with lasting power of attorney to deal with that. That individual is in the hospital, is incapable of making a decision but you as a clinician would be required to carry out those final wishes because you did not have somebody to renegotiate with. The person with the lasting power of attorney would be carrying out those last wishes.
Professor the Baroness Finlay of Llandaff: I see that as a huge clinical dilemma and also because drugs do not have single, targeted effects. For instance, if somebody has a chest infection and is distressed and coughing up horrible, thick sputum, by giving them antibiotics they may be much more comfortable. You might make no difference to the overall course of the disease, but it may be that it turns out to be a life prolonging action. If it was a life prolonging action, you would have been acting counter to an advance directive. If it was making them more comfortable, you would not have done. I do not think you can always foresee ahead the results of an intervention that you make. That is truly the dilemma that one is faced with. You take a decision at one point in time on the balance of probabilities of the outcome but the unexpected can occur and you would have known it was a possibility but it was perhaps very low on the list of possibilities.
Q377 Chairman: From what you have said, I think you may have some sympathy for the Members of the Committee having to report on all this and trying to draw conclusions. Thank you very much indeed. It has been a very helpful session.
Professor the Baroness Finlay of Llandaff: Thank you. Perhaps the Committee will have sympathy for hospice doctors.
Q378 Chairman: If you wish to write to us on anything else, please do so.
Professor the Baroness Finlay of Llandaff: There was a very good paper in the BMJ a while ago and I will print that out and bring that to you.
Witnesses: ARCHBISHOP PETER SMITH, the Catholic Bishops' Conference of England and Wales; DR HELEN WATT, the Linacre Centre for Healthcare Ethics; DR PHILIP HOWARD and DR ADRIAN TRELOAR, the Guild of Catholic Doctors; DR GREGORY GARDNER, DR GILLIAN CRAIG, Consultant Geriatrician and DR JAFER QUERESCHI, the Medical Ethics Alliance; LORD HABGOOD, a Member of the House of Lords, MRS CLAIRE FOSTER, the Church of England Archbishops' Council, and MR JAMES BOGLE, Lawyer, The Catholic Union, examined.
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 Tom 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 problems and eating disorders.
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. If you are making a medical decision we have to decide what are the circumstances, what is the diagnosis, 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 patients need in a clinical sense with what the patients choose. 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: How do you ensure that if a clinical decision was taken by a medical team that they could override advance decisions, would that be possible in the current Bill? If that is not how would you see it being made possible? In other words, I have said 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, young adults, 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 that 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, may have discussed it with friends and relatives, may have written down their request in the form of a suicide note and goes 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 that. 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 a situation. 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 canopy 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. 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, their ability to withstand the treatment and 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 the clinical issues that have to be decided for which 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 and 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 but I think he should take the role of a statutory consultee, a patient advocate, if you like, but not take on the role of actually making 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 but what I am saying is that in medical decision-making it is not just a question of the clinical situation it is also other issues of a non-clinical nature which a good clinician will also take into account. As a clinician he has to define what the clinical needs are first and foremost. There must also be a limit below which he should not go and 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: But if you take Clause 23 (1)(b) which actually uses that 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 then here is somebody who might well recover and be able to make decisions for themselves who would have that advance directive brought into operation during a temporary phase, that is what the Bill says.
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 such subjects relating to mental capacity. This was an issue that arose when the matter was discussed 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 Commission 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 the attorneys 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 super added 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. Is this intended to give me any 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 advanced 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 - goes too far. 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 to 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 will 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 I have to query to what extent you can alienate a patient's autonomy to a third party, I will come on to that. In order to achieve that you have to widen out the general authority. If you restrict the scope of these proxy consultee to being consultees or patient advocates who must be consulted on any sanctions against the health care work but do not make decisions, 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 to extend. In the circumstance that you did not have to in my submission you would still be protected but you would not have taken the 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 addressed and also other problems, for example those adumbrated by someone who has given evidence to this Committee who had the care of a evidence mentally ill patient, 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 they feel they have been left out. That is a very area different scenario to the one that is painted here. The feeling is that deputies under this Bill, the power of the appointment deputies will exercised by the court to appoint parents with mentally disabled or mentally handicapped children or adults as well whereas the scope of Bill, if we look at the Scottish text, would appear that they are going to appoint social workers into those sort of circumstances, which may or may not be rather but I would suggest it 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 advocated 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 when 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 comparable 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. The scenario you adumbrated is sufficiently protected under existing laws. The proposition 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 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 a statutory consultee and patient advocate and to use the system of attorneys is going 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 sitting at the end of the bed is a person with the power of attorney who was can order them to withdraw treatment attempt even though it could be clinically negligible 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 power or the power can 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 is. 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, how that will impact on their practice and the delivery of the health service to patients and individuals in this country. It is taking a sledgehammer to crack a nut, the 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 payments of severe sanction to withdraw treatments that they know should be given.
Q400 Mrs Humble: Would you recommend to us that rather than have general authority we have the Scottish system where there is the three different elements, there is the legal decision-making process, the health decision-making process and there is a third element, the social care process. Are you suggesting to us that we should be filling the gap by having a separate function, a separate way of making those decisions? If so how would that work in practice? One of the advantages of having a general authority is that it is not high bound by rules and regulations and having to seek advice from another authority because we are often talking about very day-to-day decisions, decisions that need to be made straightaway and are often not in themselves hugely important or have huge consequences but are nevertheless vital to that person's day-to-day existence.
Mr Bogle: I agree. The difficulty is that the law is rather a blunt instrument. Most of those activities are carried out currently without any intervention by the law and relatively rarely anything ends up in front of the court. In a sense although there is a lacuna and it ought to be filled one needs to be careful about using the blunt instrument of the statute to try and set up a framework for decisions that really, as you say, are day-to-day decisions that nobody is going to challenge.
Q401 Mrs Humble: Except there are often disagreements with family members and paid carers or statutory agencies, so it may not go to court but it can go through complaint procedures and cause a lot of aggravation.
Mr Bogle: Inevitably we lawyers and judges get a hold of it and there will end up being rulings.
Lord Habgood: I read this with some bewilderment, who sets up this authority? Who decides that B is a suitable person is to do all these things? Who checks that B does not embezzle the patient's funds? Who decides which person may do these acts?
Q402 Chairman: It is a functional approach. If that happened you decide that I should be the best friend on the postal order.
Lord Habgood: Who decides?
Q403 Chairman: I volunteered.
Lord Habgood: If I am mentally incapacitated - which I am beginning to feel I am - how do I tell you I want you to act on my behalf and spend my money?
Q404 Chairman: Then I have the protection of this law in this Bill.
Lord Habgood: How do I tell you? If I cannot do it who can?
Q405 Chairman: If are you completely incapacitated you will have a doctor or indeed a relative.
Lord Habgood: Should it not say in the Bill how such a person is designated?
Q406 Lord Rix: The draft Bill authorises one wise decision-making by making it clear that lack of wisdom does not mean lack of capacity. How do family carers and others reconcile the duty of care with empowering decisions that are seriously or consistently unwise. You talked about teeth, somebody may well have rotting teeth but they expressed a wish they do not want to go and have them out. I just want to know how the Bill could cope with that.
Mr Bogle: Going back to the point about how things are done in the Scotland, I presume you were not referring to the Adults with Incapacity (Scotland) Act you were referring to the general act in Scotland.
Q407 Mrs Humble: I was referring to the equivalent act in Scotland. We had a presentation from Scottish lawyers out how that worked and how they did not have the general authority but they had set up different organisations to do a similar job to the one that is outlined in the general authority. Not quite, there were differences and as a non-lawyer I would not put words into the mouths of the lawyers who sat in front of us.
Mr Bogle: There are some problems with the act which is working in Scotland. I apprehend from reading some of the evidence that was the feeling of some of the lawyers from Scotland who gave evidence, particularly clinicians, non-lawyers, doctor. The problem is not so much how you protect from unwise decisions so much as going into the area of medical decision-making, that is where it starts to get much more confusing and complicated rather than decision-making for mentally incapacitated, disabled or mentally ill that I suspect your Lordships are talking about. That is the area where the problems arise. If have you a power and give it to a third party or indeed if you allow a piece of paper, a legal instrument, which is what an advance decision would be if it were in writing but of course this Bill does not require it to be in writing, then you have a situation where somebody and something can direct a person who is a medical practitioner, who is qualified in the area, is able to deal with a particular patient, it could be a psychiatrist, it need not necessarily be, to do something that he knows is clinically negligent and requires him to do it under this sanction. That is requiring something of a doctor that we should never really require. That is where the danger in giving this broad authority backed up with the authority backed up through advance directives which begins to create problems. Whilst I would agree with you and with Mrs Humble there is lacuna that needs to be filled in so filling it we then run into an area where these problems arise and doctor are being told if you do not withdraw this treatment, if you do not stop the then I have the power to tell you to do that, because this Bill has given me that power, then you will be committing a serious disciplinary offence and the doctor is obliged to do something that may well cause harm to the patient but at the end of the day if he does not do it he has a very severe sanction against him. That is what troubles me.
Q408 Lord Rix: How do you protect the carer? Suppose an unwise decision was taken by a person who was deemed to have capacity, an unwise decision was taken and the carer says no and stops that decision being fulfilled, what protection is there for the carer that he or she is not taken to court by a relative who thinks that the unwise decision should not be followed.
Mr Bogle: My immediate response to that would be general law in relation to necessity. I imagine you are thinking of a circumstance where there is an argument over whether necessity applies.
Q409 Lord Rix: Yes.
Mr Bogle: That would be a matter ultimately for the court to determine of course and any doctor or carer exercising good faith as the law stands at the moment taking an action and exercising such discretion as they have in the best interests of the patient would be protected by the general law in the clinical interest of this as well as the general interest. I do not think there will be any sanction against a person in the way that you envisage. At the moment there would however be such a sanction against the doctor if you put the very strong powers that would be given under this Bill into the hands of a person who is not clinically qualified.
Q410 Chairman: In the examples that you give of a doctor surely if the doctor had a moral or religious belief that said that he would not do that then you are protected, they will not be told to do something.
Mr Bogle: I am glad you asked that question. I apprehend we have some members of the Muslim Doctors Federation. Yes they would be obliged under this Bill as it stands. There is no contra clause here. One has to ask oneself, to what extent would the average doctor say I have a conscientious objective to delivering clinically negligible services to my patient. I am not sure that is necessarily a matter of value system beliefs or a system or faith it is simply a matter of good clinical practice. All doctors whether they be Muslims, Jews, Christians or have no faith at all are going to say surely, are they not, that I do not want to deliver clinically negligence.
Q411 Baroness McIntosh of Hudnall: I am very confused by this argument for one reason, if I as a competent person decides that I am faced with the treatment which it would be clinical negligent of my medical adviser not to give me but nonetheless I decline to take it the medical adviser in that case is at no risk whatsoever of being held to account for not delivering that treatment. As I understand it, and I defer to our witness who is a lawyer, if somebody is given a power of attorney that power is given by the person who originally had the power and that person therefore acts as if he or she were that person. I cannot see why a doctor is at any greater risk in that situation than they would be in the original act, ie the person empowered by being the person were making the decision.
Mr Bogle: You have hit the nail on the head. The problem is that the original person making the decision has a perfect right to say, because of the principle of autonomy, I do not want this treatment but they will suffer the consequence, not the third party. In the case of exercising a power of attorney or being appointed by the patient the attorney if the decision is clinically negligent will not suffer consequences, only the patient.
Q412 Baroness McIntosh of Hudnall: With great respect that is not the point that is being advanced to us, what is being advanced to us is that the doctor will suffer the consequences, which is a different matter.
Mr Bogle: The doctor will suffer the consequences for these reasons, if the third party, the attorney, makes or requires a decision which he in good faith will believe is right for the patient and he will believe it is in the patient's best interests they would not be advancing this. If a decision is clinically negligible the doctor is faced with a problem which is very different than if the patient asks because if a person who is not going to suffer the consequences is requiring them to do this in those circumstances if the doctor does not do that he will then need the consent of the patient exercised by an attorney. Having been withdrawn the doctor in giving treatment will then not only be committing what potentially is a disciplinary offence but technically it is a criminal assault.
Chairman: We now move on to new decision-making mechanisms.
Q413 Jim Dowd: Before I move to questions four and five apropos of what was said earlier about best interests and people not knowing necessarily themselves, when my mother was in the latter stages of the breast cancer, to which she eventually succumbed, she was offered chemotherapy and backed by her medical advisers at Kings College Hospital to undertake the course. She was completely sane and competent and she declined. She did that in the full knowledge of the consequences because she did not think it was worth it, are you saying that she did not do that in her best interests? Is that the submission that was made earlier? Certainly Lord Habgood mentioned it.
Dr Watt: I think the Act was talking about the fact that best interests had to be given due weight. It is not that you always have to do what is in someone's clinical best interest, moreover sometimes the treatment would actually be burdensome. All we are asking is that clinical best interests be basically acknowledged so that when someone is trying to make somebody die by denying them treatment that that should be a criminal offence, and that they give them due weight. We are not saying that clinical best interests is negligible.
Q414 Jim Dowd: I do not share that. I am convinced, because we discussed it at the time, that she made that decision in her own best interests. You are trying to say there is another best interest that should have applied in making that decision.
Dr Watt: None of us are saying that decisions about something like chemotherapy, which is not suicidally motivated, made by a competent person should not hold. It is a different scenario if the patient is suicidally motivated and if they are refusing something in advance without being given the opportunity of being given information on that treatment which a competent person had and if they are refusing basic help, if they are refusing advanced pain relief and feeding, even by a tube, we would see that as different from refusing something with full medical knowledge and without a suicidal intervention.
Dr Treloar: I think it is undoubtedly the case that in the best interests of your mother in her judgment meant that she should not have treatment. There is no question that it is clinically right or in the clinical best interest at time you withhold treatment like that, I do not think any of us have a problem with that. If I might give you a slightly different example of a gentlemen I looked after three years ago with severe dementia, he was very distressed, very agitated, very confused, dreadfully incapacitated and one would imagine, although he did not know this, that had he written an advance directive he would have said "I only want treatment to alleviate my mental condition and my distress", indeed that is what his son said to us. He said, "no medical treatment, treatment of a mental health nature to alleviate my father's distress, that is what I want". The point about good clinical care is that in that circumstance the reason he was like that was because he had a heart rhythm disturbance. I had to go back and talk to the son, who we gave the powers of attorney, to say, "we want to treat this person with cardiac medicine, simple oral medicine". Interestingly he was just flying out of the United Kingdom, he was going through passport control so if I had rung him fifteen minutes later he would have been on a plane and I could not have spoken to then. In this case where it was clear we had been giving good medical clinical care which led to the improvement and the alleviation of that person's symptoms which could not have been achieved otherwise. In best interests there really should be consideration of what is good care and what will help. The second and third are when we get into these complicated decisions, when we get into things like advance directives of course it is terribly helpful, as Baroness Finlay said, if draft directives give you guidance and it be can helpful. If they prevented me from treating that person as I think under current legislation they would the effect of that would not have been a problem for me but it would have been that the patient who would have suffered. I come across a lot of examples in my work with severely demented people in the later stages of dementia where those kind of things occur. Happily we negotiated with the son and explained it to him and he said, "of course, please, go ahead". I would have to say that in our work with attorneys, particularly under the enduring powers of attorney which we currently have you know, as we do, that ten to fifteen per cent of those are subject to fraud. I can tell you as a clinician it is extraordinary difficult to get that sorted out when a decision-maker is not acting in the interests of a person, it is very difficult, you can sometimes manage it if they turnout to be bankrupt, beyond that it is very, very difficult. I think therefore with these decision making mechanisms we need very good safeguards and we need the ability to negotiate. As has been said repeatedly this afternoon, I know, advance directives which are absolutely binding would be disastrous for patients; we need to be able to negotiate around them.
Chairman: We have a problem of time because we should finish at 6 o'clock or soon after. What I would suggest is that Questions 4 to 7 deal with decision making and I think you could answer those in writing, because I am anxious to have your views on Questions 8 to 12 which are about advance decisions to refuse treatment which I know you wish to talk to us about.
Q415 Baroness McIntosh of Hudnall: There are two questions relating to advance decisions which I would like to ask. Firstly, whether advance refusals if they are built into statute, in your view, risk the welfare of patients, and I think you have already given us some indication of your views about that. If so, can you suggest how the draft Bill might be amended to avoid this? Can you also tell us whether you believe advance directives should be given in writing?
Lord Habgood: I see the Bill talks about advance decisions, whereas most of the members of the Committee have talked about advance directions which indeed was the phrase used by the original House of Lords Committee. I think it is a better phrase because "decisions" seems to imply, "This is the last stage of the process. You make your decision and that is it." A directive is a piece of advice given in circumstances which no doubt are quite different from those when it actually comes into effect, and that forms general advice as part of that material which the clinical team uses to make its decisions about the suitability of treatment. That seems to be the proper function of a directive. If it was made legally binding, it would take away from the clinical team the power of final decision and almost certainly result in patient harm. It seems to me important also that the advance directive should be in writing. It need not necessarily be in a very strict legal form, it is simply an expression of a wish.
Q416 Baroness McIntosh of Hudnall: Since the language of the Bill currently does refer to advance decisions, can I take it then that you would recommend the language of the Bill be changed to refer to "directive", which would in your view have the effect of removing the absolute quality of that statement made in advance?
Lord Habgood: I would prefer directive because a directive is simply an instruction, it is not a final decision.
Dr Howard: I would agree with that. I think they should be advisory rather than mandatory and I do not think we should freeze somebody's views in time. I have given the example of the suicide note which would be a very common problem. In reaching a decision, very often with regard to difficult decisions, it is a process over time rather than an event, and we are almost treating a decision by a patient as something which is absolutely fixed. It is only fixed if the patient dies, they have the treatment or they become incapacitated. Very often patients will decide and wish to discuss decisions and may even change their views many times over. In ordinary clinical practice, if you for example are going into hospital for a hip replacement, the surgeon is going to be very keen to make sure your consent is up-to-date. There is an argument to say, "Discuss it with the patient in out-patients" but that may be months before, so always get contemporaneous consent.
Q417 Baroness McIntosh of Hudnall: But in people who lack capacity, by definition, that is not going to be possible.
Dr Howard: No, but the decision could be made months or even years in advance. I had a patient who, curiously enough, I had known before, who had made an advance decision unbeknown to me and was actually stuck in his notes to the effect that if he became incapacitated and confused and was suffering from a terminal illness he would not want to be treated. I treated him, not knowing he had made that. His wife said I should not have treated him. It was clear he had quite advanced lung cancer but when I had treated him I asked him, "Did I do the right thing?" He said yes. What was curious in that case was when I came to talk to him about his lung cancer, it was quite clear both from what he said and from what his wife said, he had not really faced up to the possibility of his developing a malignant disease at all. In other words, he was just like any other patient. That decision was made - and his wife made an advance decision as well not to be treated under similar circumstances - I think as a result of a television programme when both of them were fit and well and they both decided hypothetically - in practice it was hypothetical - this is what they would want. But when it actually came to facing up to the reality of having lung cancer, he and his wife were just as anybody else and they had not really thought about the actual implications, they had not understood what it would mean to have a terminal illness.
Dr Craig: Can I give two examples very quickly?
Q418 Mr Burstow: Can I ask my question and then it might be usefully illustrated by the examples about to be given. It is really to try and understand the nature of the concern and whether or not in fact on reading of the draft Bill the concern is being answered. In Clause 24(4) it lists (a) through (c) a series of circumstances in which the advance decision is not applicable. My reading of that, and I am not a lawyer, would suggest in almost all circumstances unless the person has had the ability to act as a time machine and go to the future and take detailed notes of every aspect of the circumstances surrounding their loss of capacity and the condition they are in, that an advance statement is not likely to be valid or, if not, entirely valid, and therefore is a material factor in the decision making process which would not be binding in that situation. I wonder if the witnesses we have here have looked at this and why, having considered it, you still come with the views you have been putting to us so far about this particular drafting of the Bill?
Dr Howard: Because they can be expressed in very broad terms and they may appear to be rather specific. For example, if I can give you another case, I think it was an American one, the gentleman was asked in the event of his becoming incapacitated and suffering a cardiac arrest, would he want CPR. He had an inguinal hernia repair under general anaesthetic, he suffered a cardiac arrest, question: should he be resuscitated?
Q419 Mr Burstow: Then (4)(c) under Clause 24 says, "An advance decision is not applicable to the treatment in question if circumstances exist which were not anticipated by P at the time of the advance decision and which would have affected his decision had he anticipated them." Surely that scenario is directly addressed by that drafting?
Dr Howard: No, because it was a very broad one. He was incapacitated by virtue of being under anaesthetic and he had suffered a cardiac arrest. We, of course, in this country would resuscitate him immediately but there is always a risk that he may suffer anoxic brain damage and therefore he was not resuscitated.
Q420 Mr Burstow: The point I am making is that we are talking about the precise drafting of the legislation, not the situation which arises out of the common law we currently have. The drafting I have just read to you surely provides a situation which was not anticipated and as a consequence this directive in that situation would not have been one which would have been binding.
Dr Craig: Could I come in on this one? Reading Clause 24 I was filled with horror because section (2) provides chaos and muddle. I really do not see how the Government can possibly argue that advance directives should be legally binding when there are so many situations which undermine their validity. In an emergency situation in casualty or an acute medical ward when a junior doctor is called to a crisis situation, he cannot decide whether Patient A's advance directive is valid or not in all these various scenarios. It is just totally impractical. May I also point to the experience in America which shows that in fact legally binding advance directives do shorten life, they can be a death warrant, they can cause patients to die unnecessarily early. There was a paper I read a few years ago which showed that patients who had signed advance directives died earlier than those who had not. The Federal Government said, "Great, these are working", because their aim was to cut health care costs. The patients who had signed advance directives were dying of things like (inaudible) after successful hip operations, they were dying of coronaries because they were not resuscitated, and all this sort of thing. They are really dangerous. One final point, an example of when advance directives are dangerous and should be overridden: a consultant physician had a coronary and he survived initially and he told his junior doctor he was not to be resuscitated. He then had a cardiac arrest and he was resuscitated and this happened four times. That man is now enjoying a happy retirement and he is thankful that the junior doctor did override his wishes and he said to a colleague, "Do you know, that was the only occasion that young man ever gainsaid my wishes."
Q421 Baroness Knight of Collingtree: I wanted particularly to ask a question of Archbishop Smith, if I may. It deals with the Catholic Bishops' Conference Statement which has been presented to us. It actually started with the suggestion by the BMA, which has no force of law behind it at all, that giving food and drink is treatment. The Conference stated, "Existing case law already permits patients in a persistent vegetative state to have 'treatment' .... withheld with the aim of causing death." That is actually not true because, as I understand it, the Law Lords who made this decision made it perfectly clear it was not to be used as a ground rule, that it could be done to patients although in fact now we have scores and scores of cases on record where this is being done to patients. The Conference said, "The law has been left, in the words of one Law Lord, in a 'morally and intellectually misshapen state', and he was one of the Law Lords who was dealing with that particular Bland case. Then you go on to say, "The Draft Bill does nothing to reverse this unfortunate situation." Would you like to comment on this please?
Archbishop Smith: There is a difficulty with the Bland case, and I am not going to give all the details of it because it is complex. In the old days, if I can put it like that, medical people generally would talk about basic care, in other words, feeding, hydrating, washing and so on. What the Bland case appeared to do was to include that basic care as treatment and there was a confusion there, I think with respect to the Law Lords, because it is perfectly legitimate for me as person who is capable mentally and so on to refuse treatment which others may decide would be in my best interests, but if I decide, "This is too burdensome for me", it is perfectly morally and ethically acceptable to say, "That is my choice, even though I know as a consequence my life will be shortened." The unethical part, we would say, is, "If I choose to do that with the specific intention of shortening my life." Does that help?
Q422 Baroness Knight of Collingtree: Yes, except I was more interested in those patients who do not wish to die and are in fact dying through this particular ruling. That is what I was trying to ask you, whether you think the draft Bill does address that point which, to me, seems grossly wrong?
Archbishop Smith: No, I do not think it does. This is one of our difficulties. I do not think it is clear enough in the Bill. There ought to be some cautionary element to say, "Even where somebody has got a lasting power of attorney or general authority, that person cannot act with the consequence of producing or leading that person to death." In other words, there must be some restriction on what can be permitted and what cannot.
Lord Habgood: This was a subject of great discussion on the Select Committee ten years ago, and I think I was in a minority of one in saying that refusal of hydration and nutrition should not be regarded as equivalent to refusal of treatment; it was not a form of treatment, it was about basic care. In the Bland case, it was less undesirable because Bland had no cerebral cortex, no consciousness, and this was a quick way to let him die. If the refusal of food and drink takes place in somebody who is conscious, then it seems to me you are in a different ballgame altogether. To starve to death is not consistent with basic care, as I see it.
Lord Rix: I agree.
Baroness Knight of Collingtree: Thank you.
Q423 Mr Burstow: We have partly picked up on the other point I wanted to ask, which was this concern about how you deal with fluctuating capacity which was very much part of the Church of England's submission, and I think it has been picked up by other submissions as well. It would be useful to hear from any of the witnesses of any specific thoughts and suggestions they have about how to improve the Bill to ensure there are safeguards in respect of that.
Lord Habgood: Can I go back to the point I was making at the beginning, namely much depends upon prognosis and whether the incapacity is judged to be permanent or temporary. It seems to me that particular provisions of the Bill need to be written with that dichotomy in mind. If you have permanent incapacity, it seems to me it is permissible to take action through the various mechanisms proposed here. If you have temporary incapacity, it seems to me the aim must be to try to restore as much capacity as possible in order somebody can make decisions for themselves.
Dr Howard: It is very difficult because you are considering fluctuating capacity, and I think a number of us have said also "fluctuating decisions" even if you are capacitated. A lot of the problems with this would not arise if the issue of capacity did not trigger off the full effects of advance decision making and proxy decision making in a way which is going to bind the doctor. If advance decisions were indicative, as I think they ought to be, and if proxy decision makers were consultees, patient advocates, rather than people who were in the driving seat making the decisions, I think a lot of these problems would lessen.
Q424 Mr Burstow: You have made your views on that very, very clear today. I wonder if there were any other safeguards over and above those which you particularly want to be sure the Committee was mindful of in framing its report and recommendations in due course?
Dr Howard: I agree with Lord Habgood, in that in clinical situations what we always try to do is enhance the patient's capacity and that may well mean treating the medical conditions which are pre-disposing to it, such as chest infections and so on.
Q425 Chairman: If an advocate is acting for somebody who is completely incapacitated and advises the decision, is that so different from an attorney in the same position?
Dr Howard: The attorney would actually be making the medical decision, the advocate or the consultee would be involved in the decision making process. I think as a matter of good practice now, and I think it ought to be placed on a statutory basis, the attorney should be a statutory consultee, somebody who was there under statute law and ought to be consulted.
Chairman: The questions we have not reached you have actually answered because we have slightly wandered occasionally from the actual subject we were on. The only things we have not reached are the new decision making mechanisms, Questions 4 and 5, and you might like to write to us on them. I think we have your views now on basic care. If there is anything on lasting power of attorney, please write to us as well. We have reached the time to finish, thank you very much indeed, it has been a long afternoon. We have found it very, very helpful. With Baroness Finlay first and then yourselves, we have found it a very helpful afternoon. Thank you very much.