109.Memorandum from Patient Concern (MIB
Patient Concern welcomes the provisions of the
Mental Incapacity Bill. It will reassure patients that they can
retain a measure of autonomy when they are at their most vulnerable
and help prevent unwelcome decisions made in their "best
interests" by medical staff with no knowledge of their choices,
values and priorities.
In our response we shall limit ourselves to
commenting on the priorities that will affect the majority of
the population, namely people who may wish to anticipate the risk
of losing their mental capacity. Other organisations have more
expertise in the area of mental illness and disability from birth.
Lasting powers of attorney (LPAs)
This is an essential provision in a supposedly
patient-centred service. The current system, where it is "good
practice" for medical staff to discuss treatment options
with close family, works poorly. We have many complaints about
resuscitation or life support decisions taken without consultation.
Even where those matters are discussed, the decision rests with
doctors. As doctors are, quite rightly, dedicated to saving life,
this may result in life-prolonging measures that cause extra suffering,
which the patient would not have sanctioned.
There are also frequently situations where family
members disagree, in which case doctors will normally pursue the
life-prolonging course. The LPA provisions will enable us to appoint
a trusted person who knows and understands our views on treatment.
Opponents of this legislation state that attorneys
with control over financial and welfare matters will have a vested
interest in treatment withdrawal for the unfortunate patient.
This may be a legitimate worry in the case of a single attorney.
We assume that clause 3(b) means that, in the case of two or more
attorneys being appointed, decisions on life-sustaining measures
could be limited to someone with no say in the patient's financial
affairs. It might be helpful to clarify this point in the legislation.
Clause 4(c). We read this as meaning
that the provisions of a valid advance statement would take precedence
over the authority vested in an LPA and we fully support this.
However, other organisations have read this as meaning the exact
opposite, so clarification is necessary. No attorney should be
able to override a properly made advance directive.
In order for attorneys to fulfil their obligations
in the field of health and welfare, it is essential for them to
be able to consult medical records or case conference notes. We
currently receive many complaints that staff worry so much about
the rules on confidentiality that carers are denied information
they may need to look after a patient. It would be helpful if
the rights of an attorney to consult all relevant information
were enshrined in the Bill.
Clause 30 outlines codes of practice
that the Lord Chancellor must prepare, most of them for use "after
the event". We consider that it is equally urgent to make
provision for information to be prepared for access by those considering
appointing a LPA. Those taking this step must be aware of the
serious implications. Patient Concern would see dissemination
of such information as one of its prime tasks, but this could
not replace an official avenue of advice.
Legislation on advance statements is long overdue
and simply catches up with the position of such statements in
common law. Common law is not sufficient in this instance, as
unconscious or terminally ill patients are in no position to pursue
their rights through the courts.
Though the good practice guidelines issued by
the BMA, GMC etc all state that valid advance statements must
be observed, a great deal of confusion still exists among medical
professionals. When we speak at conferences, we find that some
doctors still insist that they are not legal and can be ignored.
We also have examples where hospital staff have refused to accept
an advance statement, even when backed up by the wishes of the
family, and have insisted on prolonging the death of elderly people
against the wishes they have expressed in advance. Therefore it
is a matter of urgency that their status is clarified.
It seems a necessary and logical follow-up to
this embodiment in statute that an advance statement made in written
or recorded form should be lodged with a central body, preferably
the Court of Protection. It would then be a simple matter to check
if such a statement is in existence when, for instance, a patient
is admitted to hospital in a coma following a road accident. At
the moment there is no obligation on hospitals to check or record
the existence of an advance statement, let alone any national
guideline on what should happen to such a document once produced.
This may be a matter for the Department of Health to rectify but,
in the meantime, it is all too easy for an advance statement to
be overlooked. Providing the machinery to register a document
or tape recording does not imply that an oral statement is not
valid and this can be made clear. It merely provides a necessary
safeguard against any person being able to claim ignorance of
an advance statement.
The Bill refers only to advance statements refusing
treatment. It should also acknowledge that such a document can
be used to state that the patient wishes any reasonable measures
to be taken to preserve and prolong life. We understand that doctors
cannot be required to provide any treatment they consider inappropriate,
but this is covered by the phrase "reasonable measures".
The formal recognition of this type of statement would help to
allay fears, often voiced by the disabled, that they will be subject
to assumptions made about the quality of their life by the able-bodied.
It will also mean that the advance statement will direct any decisions
made by an attorney who might, at the crucial moment, be subject
to outside influences.
Clause 24 (4c) causes us great concern. It is
probably impossible to judge what a person might, or might not,
have anticipated when making an advance statement. It is certainly
impossible to judge whether or not this would have affected the
decision. The vague wording of this clause makes it far too easy
for those who have their own reasons for opposing advance statements
(and there are many such people, including doctors) to argue that
the statement is not valid. One of the freedoms we must have,
when taking an advance decision, is the freedom to take a risk.
Many of those making advance statements would prefer to take the
risk that they might die a little sooner than absolutely necessary,
rather than risk the unwanted interventions of invasive surgery
If the thinking behind the clause is that a
completely new and successful treatment might have been developed
between the making of the advance statement and its implementation,
then we suggest that this exception to its observance should be
stated in terms. Though this possibility is always quoted among
the reasons for opposing advance statements, such a happening
is highly unlikely outside fiction. Under the current wording,
minor variations in established treatment that doctors may believe
"worth a try", could well be used to thwart the well-considered
intention of the person drawing up an advance statement. That
is surely the opposite of the Bill's objective.
Opposition to the Bill
Opposition from so-called "pro-life"
groups is likely to be carefully orchestrated and vigorous. Following
"Who Decides", thousands of protest letters were engineered
and may well have been the cause of delaying this necessary legislation
for so long. Alert put out its web site "Stop the Kill Bill"
before any bill had been drawn up. Such groups are well organised,
passionate and usually succeed in punching beyond their weight.
Opposition seems rooted in the religious belief
that life is sacred and must be preserved at all costs. Underlying
this is a conviction that refusal of treatment is tantamount to
suicide and therefore a sin. No one would wish to interfere with
anyone adhering to their own beliefs, but they cannot be allowed
to inflict them on the rest of us. It is our basic right to refuse
treatment and this right must be protected, even if we are unable
to speak up for ourselves at the crucial moment.
The pro-life literature concerning the Bill
concentrates on withdrawing and withholding nutrition and hydration.
It asserts that this will become commonplace and will turn caregivers
into murderers. However, as things stand, it is considered ethical
for doctors to take this course if they consider that no quality
of life remains. Therefore it can hardly be considered less ethical
if it is the advance choice of the patient concerned. It is not
essential for an advance statementor authority given to
an attorneyto include this provision and it is quite likely
that only a minority will do so.