e-mail gill@willtolive.co.uk

Gill Gerhardi   

J. Bercow MP
House of Commons
15th July 04
Dear Mr. Bercow
Thank you for your letter of the 12th July laying out your position on the Mental Capacity Bill prior to our meeting at your Aston Clinton Surgery
To answer your points in order

Problems Advanced Directives and Living Wills

Whilst Advanced Directives and Living Wills maybe a way for patients to make their wishes known and take back some of the power and responsibility for their treatment. However there are too many situations that Advanced Directives and Living Wills are supposed to deal with that they cannot hope to deal with every possibility that might arise. This means that Advanced Directives and Living Wills get written in such general terms that they are full of holes and are therefore ripe for misinterpretation and abuse  
Most people don't know what they are going to feel like if something happens to them. If they get decisions put into something like a Living Will they may well change their minds if it actually happens. That is OK if their verbal wishes are given the same weight and legality as those they wrote down in front of a Solicitor or witnesses but I fear that that might be problematic.  
According to the Mental Capacity Bill, Advanced Directives can only be used negatively to say what you don't want to happen to you. I want to say what I want to happen.    
You say that right is safeguarded in law already. According to the GMC
Withholding or withdrawing of treatment including nutrition and hydration According to the GMC Guidelines the law states that
  • An act where the doctor's primary intention is to bring about a patient's death would be unlawful.
  • Withholding or withdrawing treatment is regarded in law as an 'omission' not an 'act'.
  • In the case of patients in a permanent vegetative state (PVS), artificial nutrition and hydration constitute medical treatment and may be lawfully withdrawn in certain circumstances However, in practice, a court declaration should be obtained.
  • Final responsibility rests with the doctor to decide what treatments are clinically indicated and should be provided to the patient, subject to a competent patient's consent or, in the case of an incompetent patient, any known views of that patient prior to becoming incapacitated and taking account of the views offered by those close to the patient
These appear to back up your position that no deaths are precipitated without court sanction. Yet what appears to be happening in reality is somewhat different. The Withholding or withdrawing of treatment including nutrition and hydration is certainly not only happening after a court decision. According to the Libdems, who voted at their Spring Conference this year for medically assisted suicide and lost my vote as a result, a paper published in The Lancet said that there are 18,000 medically assisted deaths per year in the UK. Although I haven't been able to see the Lancet article and don't know how that figure was reached, the number of cases and complaints about the worst cases that reach the media suggest that that figure is probably not far from the truth. I've included some reports in your pack. Many can only be regarded as anecdotal but you only have to talk to nurses working on geriatric wards to find out how prevalent the practice is. As a disabled person Jane Campbell's article is particularly harrowing to me which is also in you pack.  
While doctors are allowed to withhold and withdraw treatment including nutrition and hydration from anyone regardless of their mental capacity, patients who are fully capable seem to be being sedated to take away that capability before `treatment' is withdrawn, any legislation condoning such practices is likely to let the whole practice escalate.  

Further Concerns

Best Interest -
  The Bill says. "Everything that is done for a person who lacks capacity must be in that person's best interests. The Bill provides a checklist of factors that decision-makers must work through in deciding what is in a person's best interests. The person themselves - their wishes and feelings - and their participation are key. Also, carers and family members gain a right to be consulted."  
  Regardless of the Bill's intentions what is in a patient's best interest will boil down to subjective value judgements of all those consulted. Doctors already use quality of life judgements to make life and death decisions for their patients on a daily basis and because many don't come across severely disabled people I suspect that early death is `prescribed' for many people with physical and mental disabilities as if they were terminally ill. Someone's quality of life or best interest cannot objectively be decided without the deciding person putting their own personal feelings about how they would feel in that situation into it.  
In the `FULL REGULATORY IMPACT ASSESSMENT' of The Mental Capacity Bill there is a breakdown of costs imposed on different sections of society by the bill but there appears to be no real understanding of.  
  a. The lack of time health professionals have in their normal working lives.    
  b. How much real time it takes to communicate effectively with people with learning or communication disabilities    
  c. The lack of real continuity of care there is in hospitals which is what people with diminished capacity need to feel relaxed and more able to cope.    
The promotion of advocacy in the Bill and the voluntary sector may help solve some of these problems in the longer term. The remit of the bill should be giving these very vulnerable people the best possible environment to use whatever capacity they have. It simply isn't doing that at present.    
I have included in your pack an article that graphically illustrate how attitudes towards disabled people mean that we are drawn into the catchment of, and are badly affected by, legislation that was not meant to be aimed at us at all.    
I am glad that you don't like the idea of anything that would legalise euthanasia. However, I'm afraid that since I sent out my `Against Assisted Dying' booklets the overwhelming evidence has forced me to accept that euthanasia is already sanctioned in the UK. I will avoid further Hospital stays like the plague.    
  Yours sincerely    
  Gill Gerhardi    

E-mail then sent on the 20th July 2004