Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

Examination of Witness (Questions 341-359)


9 OCTOBER 2003

  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 relating to the narrow application in the Patients' Protection Bill from 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 Bill 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 benzodiazepine group of drugs such as Midazolam 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 which somebody 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 it. 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 her 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 or 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 10 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.

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