Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

Examination of Witness (Questions 360-378)


9 OCTOBER 2003

  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? Do you think it would be possible to write so that the wishes of the patient were clearly expressed but they were not absolutely legally binding when it comes to pulling all the plugs—thus ending life?

  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, thinking 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 a 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 would 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 hypercalcaemic 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 from their raised calcium level 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. He did not want to come to hospital but was persuaded to. He 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.

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