Joint Committee on the Draft Mental Incapacity Bill Written Evidence

93.Memorandum from Marie Columb (MIB 198)

  1.  As a registered nurse in a stroke unit I am involved with decisions to treat or whether prolonging life is too burdensome, regularly. It is very obvious that as a patient becomes more dependent their personal wishes become more intense and then blurred as they see themselves as being a burden on their loved ones. I have seen relatives swayed by the patient themselves or by other relatives into believing they want to be left to die and putting great pressure on doctors who believe there is a very sustainable life to be treated here. Quite apart from the fact that these relatives usually have no idea what is involved when you allow a patient to die from neglect when they are not dying I feel as a nurse I am morally bound to protect and sustain life. We live in a society prepared to do anything to get what they want, a society who is used to thinking of disabled people as being less than human or as second class citizens. I have seen patients in my care refusing all treatment, unable to face life disabled and going through an agonising death despite all our efforts. A death from starvation and following a "not too serious" stroke but their choice has been respected and their wishes upheld. There was no need for an advanced directive.

  2.  ln our hospital the view is that diet and fluids are a basic human right and are not treatment be it by ANH (Artificial nutrition and hydration) or ordinary nutrition and hydration.

  I feel that Florence Nightingale was correct. Her motto was simply "Do no harm".

  3.  Often a decision to treat can be complex and one informed conscience can differ from another as we have seen on the news as pathologist experts have come to such differing conclusions even under oath in court on many occasions. It is now generally agreed that the decisions made from the collective conscience of "the team" (of doctors, nurses, physiotherapists, occupational therapists and social workers) is medically and ethically correct and bound to be less subject to the unreasonable pressure a relative or indeed the patient themselves may feel.

  4.  Consultants are always looking for simple ways to be able to come to the right decision in all cases (without damaging the traditional paternal role they have held in the past. Unfortunately many patients or their relatives have lost the trust they used to have in doctors. This bill would further damage that trust.

  5.  The public seem to feel they must make their Advance Directive now while they are healthy because it will be expected of them to make these huge decisions about their treatment when they are at their most vulnerable. When they are probably still feeling very traumatised and are certain to be the least informed about what is ahead of them or will be available and the type of life they will need to adapt to. When in fact this is not true and the treatment of these people would be severely hampered if the doctors were prevented from treating them because of a legally binding Advanced Directive that was written many years before.

  6.  It is common knowledge that your views change from day to day and when you are actually in a life and death situation your views change dramatically from what they may have been when you first wrote the directive. Our aim is to always inform our patients as much as possible about their stroke with videos, tapes and leaflets when they come in first. Having seen the information you can see the change in their attitude and the realisation that there is so much more they don't know. They realise they need to rely on the professionals and they relax and are prepared to wait and see what real damage is left after 6-8 weeks. Each stroke is different. Legally binding advanced directives would only inhibit their care.

August 2003

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