Joint Committee on the Draft Mental Incapacity Bill Written Evidence

139.Supplementary memorandum from Mr Roger Goss, Patient Concern (MIB 1195)

  I attach the two proposed amendments to the Bill we were invited to submit by the Chairman of the Joint Scrutiny Committee during our oral evidence on 16 September.

  I mentioned during my evidence that the BMA want the requirement to explicitly give LPAs power to make end of life decisions removed. (Clause 10) They argue that the absence of such a power would mean clinicians going on giving treatment when of no benefit. Clinicians would have to assume they should carry on rather than stop.

  We oppose this suggestion for two reasons:

    —  We believe the real reason for their objection is the natural and usual desire of the BMA to protect clinicians freedom of judgement to do as they consider fit, unhampered by patients explicit instructions.

    —  Because of the gravity of deciding to grant end of life decisions to someone you trust to act in accordance with your beliefs, values and priorities, we consider granting it explicitly a sensible safeguard against a poorly written and ambiguous LPA.

September 2003


Specific amendments for improving the Draft Bill suggested by Patient Concern (founder member of the Making Decisions Alliance)

Tuesday, 16 September 2003

  These suggested amendments reflect the reactions of patient concern's special advisory board to the draft bill and my 10 years' experience dealing with issues around advance refusals of treatment.


  Please give serious consideration to removing sub-clause 4 c of clause 24. However well-intentioned this safeguard, it threatens the enforceability of all advance refusals on the basis of pure speculation. We appreciate the desire to protect people from missing out on new successful treatments.

  If that is this safeguard's objective, please say so "in terms". If this is still considered insufficient protection from missing out on some brilliant new intervention, then consider making it a legal requirement for an advance refusal to have been made, or updated, within the last x years of becoming applicable.

  Please keep in mind two realities. Firstly, as we have discovered from the many calls to our helpline, e-mails, and letters, some clinicians understandably find it difficult to accept a "thanks but no thanks". The BMA acknowledges this problem in their guidance on advance statements.

  Secondly, the ultimate purpose of this legislation includes facilitating the right to make an advance refusal for any, no or an apparently irrational reason. It is also about protecting our right to risk making our own mistakes, rather than promoting paternalism, however well intended.


  Please give serious consideration to including a proforma advance statement in a schedule to the bill.

  Nine out of 10 people are unfamiliar with this common law right. Many healthcare professionals are unclear on the legal enforceability of valid refusals of treatment. Some lawyers have only the vaguest notion of their legal status.

  Including a proforma in the bill, rather than leaving it to codes of practice or guidance, such as produced by Patient Concern, would perform an invaluable educational role. It would act as a visual aid to helping people to envisage the form a statement can take. It could also suggest a structure that incorporates useful safeguards such as two independent witnesses. These could certify that they are not aware of undue pressure on its author to make a statement and that they have no interest in its implementation.

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