Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

12.Supplementary memorandum from the Baroness Finlay of Llandaff (MIB 1208)

  I am most grateful to the committee for giving me the opportunity to address you today. I had one other point to make, which may appear trivial, but I hope may help avoid confusion.

  I commend the term "Advance Decision to Refuse Treatment". It will need to be carefully promoted as "Advance Decision" or "Advance Refusal", rather than the current misleading term in common use: "Advance Directive". The term "Advance Refusal" may avoid confusion in anyone's mind as to what the patient can and cannot decide in advance.

  It would clarify that the patient cannot "direct" something to be done to him or her that is deemed futile, in the vain attempt of prolonging life (eg intravenous chemotherapy for refractory advanced cancer; to continue ventilation when massive brain damage and no possibility of recovery of spontaneous respiration). Equally, the patient cannot demand an intervention to foreshorten life—eg injection of barbiturate and curare to cause death. I realise the Bill does not allow for the patient to demand an intervention, but the term Advance Refusal may be a safer descriptor of the document. I apologise for omitting this earlier today in response to Baroness Knight of Collingtree's question.

  I also welcome the best interest principle. It will be important that the accompanying guidance makes clear that the views of those specified in 4 (2) (d) should be consulted but that their opinion cannot override the clinician's decision to act according to their consideration of "best interest". Without this made clear, the clinician will be the puppet of conflict between for example, family members or family member and employed carer.

  In relation to the severely ill, psychiatric disease is easily missed as many of the pointers to treatable depression are similar to the symptoms and signs of, and appropriate responses to systemic disease: eg loss of appetite, loss of libido, fatigue, sleep disorder, pessimism about self and the future. States of high emotional arousal, such as a broken relationship or the parent whose child (of whatever age) is dying, can distort the ability to take decisions.

  I touched on, but may not have made clear, my concern over the code of practice guidance. There is no definitive test of competence; it is a considered clinical judgement and each test used will only give you results to the specific questions asked. Also, the very process of an assessment took is very tiring for someone who is very ill, so they may become fatigued into incompetence by the process of assessment. Any guidance should be very simple and avoid more form filling by professionals, since form-filling tends to detract from true sensitive communication. One paper that I referred to, which the BMJ published, is: Barbara Hewson. The law on managing patients who deliberately harm themselves and refuse treatment. BMJ 1999;319:905-907. Full text is available on the British Medical Journal website


  Another very useful text is the book "The Diving Bell and the Butterfly" by Bauby, which describes his experience of locked-in syndrome when he was considered to be incompetent, but actually could see, hear and think but had no movement at all to signal anything to those around. A speech therapist realised he had a single eye muscle movement to communicate with and she helped him to dictate the whole book using predictive spelling with a single eye movement. He died shortly after it was published. It is a short book and I would really recommend the committee to try to read it as it gives the patient's perspective beautifully and the dangers of communication difficulties.

  I hope this is of some help.

October 2003

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