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.
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
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.