Dear Ms Graham
I am writing to you as an Old Age Psychiatrist working
in a district clinical setting to express my concerns about some
aspects of the legislation now being proposed. I shall be brief
and try to make discreet points. Firstly however I should say
that the principle that people with incapacity should be able
to make decisions and express wishes about their future care is
very welcome and absolutely right
I am concerned however that the proposed legislation
on advance refusal is misconstrued I feel it is discriminatory
to allow people to make advance refusals while denying them, as
the proposed legislation does, the opportunity to make requests
about treatments they may wish in the future. Why should we not
allow someone to ask that if they develop dementia they do wish
to be given appropriate drugs and care, and why should they not
consent in advance to treatments, such as surgery (or even ECT)
if they know about them and they would work for them?).
2 As it stands the proposal to make advance refusals
statutorily enforceable is likely to have grave effects on some
of my patients. Very many of my patients accept and benefit from
care which they may not have anticipated when they were well.
It is the nature of being ill that one ends up in circumstances
that are not anticipated. The choices people make when sick often
change substantially from those they made when well. In the obstetric
field, birth plans have been widely used, but are routinely discarded
in the heat of the labour ward. If they were legally enforceable
they would most certainly cause death and disability in newborn
children. Similarly advance refusals will cause unintended harm
to some older people with incapacity.
It therefore seems to me that legislating to make
advance refusal statutory rather than strongly advisory risks
the welfare of patients. If they are to be included in legislation
then advance requests should also be allowed. I would ask you
to consider changing the wording of the clause on advance refusals
to "is or is not" and changing the title to advance
3 An enormous amount of the care I provide is
given to people without capacity. If we have to fill in forms
for each and every treatment, or consult attorneys who may not
be close, we will be unable to do the amount of work we do now
in the time available. There is already a grave shortage of Old
Age Psychiatrists. In Scotland, the incapacity legislation has
made dental treatment, and flu jabs more difficult for those with
incapacity and it was found necessary to make the incapacity arrangements
"permissive" (something which can be used if felt needed)
rather than obligatory (to be used for all procedures). I would
strongly urge that you do this in this Bill too. If you do not,
then older people will be denied treatments and will suffer as
a result. It is therefore very important, under Section 6(1) that
you ensure that the majority of care can still be provided under
4 In the 'best interests' definition, there is
no component which talks about "Good Clinical Care".
Surely what is good medicine and what will work and help is a
key consideration in what is in a patients best interests, surely
"Good clinical care" should be added in here.
clauses about testing the validity of advance refusals also need
strengthening. Perhaps amendments such as
1(b) add "clearly "to read "clearly
applicable to the treatment"
4(c) add "clearly" to read "clearly
understood or anticipated"
It is also very important that if doctors or others
have "reasonable grounds to doubt" then they should
not be bound by the directive.
The reason for these suggestions is, simply, that
in my clinical experience, if these strengthened safeguards are
not included in legislation, then patients will suffer and go
untreated as a result. A good example would be a stoke patient
who wrote a directive declining stroke rehabilitation, or a patient
with a urine infection who wrote a directive declining treatments
other than pain killers. The out turn of these statements will
often not be death, but prolonged and enhanced suffering which
could be easily averted. These statements need to be advisory
therefore. Relatives, nurses and doctors should not be made to
stand back and watch patients suffer as a result of a directive
which was not made with proper understanding of the situation
in which the patients find themselves.
6 The powers of attorneys also need very good
safeguards. We know that I O0/a
of all financial attorneys commit fraud at
present and we as clinicians find this very, very hard to sort
out. With the current enduring powers of attorney, bankruptcy
automatically disqualifies an attorney. We need clear statements
in the legislation that where an attorney does not appear to be
acting in the best interests of a patient, then he or she be displaced
quickly and easily. Otherwise attorneys who do not have the best
interests of their appointees at heart, will quickly be able to
ensure neglect, under-treatment etc. and we as clinicians will
find it almost impossible to sort this out.
I am concerned about the powers of advance refusals. They should
not be allowed to require the stopping of relatively simple treatments
(such as anti-convulsants or diabetic medication). Otherwise,
patients will again end up dying in desperate circumstances. Perhaps
an extra clause could be added to section 10(4) to this effect.
I do hope these thought are helpful. I am very happy
to discuss them further with the committee if they so wish.
Dr Adrian Treloar, MRCP, MIRCGP, MlRCPsych
Consultant and Senior lecturer in Old Age Psychiatry
Oxleas NHS Trust and Guy's Kings and St Thomas Medical