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
lifeeg 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
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.