From the Medical Ethics Alliance
Ms Francene Graham,
House of Commons,
London SW1P 3JA
Re: The Draft Mental Incapacity Bill.
Dear Ms. Graham,
The Medical Ethics Alliance is a Hippocratic and World Faiths
coalition of medical bodies and individual doctors. We welcome
the opportunity to comment on this draft Bill. We have been involved
with some of these issues for a number of years having
previously made submissions to the Lord Chancellor's Department.
1 We welcome the Bill's provisions to protect the financial
and welfare needs of people who have lost, or never enjoyed the
competence to be able to manage their affairs. We will not be
addressing these areas.
2 We note that the Bill applies only to adults
or those over 16 years. This is appropriate as proxy decision
making for the protection of children is already provided for
by other legislation such as The Children Act.
3 We recognise that there can be problems over decision
making in health. We welcome the intention of the Bill to
maximising the patient's ability to make their own decisions and
exercise their competence fully.
4 Under present law health decisions can already
be made on the basis of necessity or the patients best interests
and there is a considerable body of case law on this.
5 The Bill proposes a number of relatively untried
and untested proposals which may have unintended consequences.
In Scotland, where the Incapacitated Adults (Scotland) Act has
been in force, it has given rise to other problems.
Health attorneys may disagree with doctors or cannot be located
when needed. The replacement of the best interests principle has
not always worked to the patient's advantage.
6 The bill does not define the 'best interests' of
a patient but merely suggests in section 4 that this could be
something as subjective as a 'belief' held under a lasting power
of attorney. This is not good enough and is frankly dangerous.
It vests a large amount of power with the donee but does not provide
sufficient safeguards for the incompetent patient. Its potential
for abuse in cases where health outcomes interlock with financial
considerations is all too obvious.
We do not think that the "wishes and feelings"
of patients alone should be taken into account. Values should
also be included. It is probable that religious beliefs amongst
those who regularly subscribe to a World Faith are likely to be
part of their thinking. An example of this can be seen from the
"Advance Christian Declaration for the Management of Serious
Diseases" appended to this submission. It will be noted that
it is more that an advance refusal of treatment. We think
that such a document should be recognised and respected. As doctors
we believe that our colleagues would welcome such expressions.
Objective criteria of the best interests of a patient exclude
the possibility that it could be in that person's best interests
to have his or her life deliberately ended by an action or omission
intended to end the life. To do so would be a denial of the inherent
worth of the incapacitated patient. In the area of healthcare,
`best interests' covers the restoration and maintenance of health,
or of whatever degree of well-being can be achieved; the prolongation
of life, and the control of symptoms when cure cannot be achieved.
7(a) This draft Bill would introduce some new powers into Statute
Law such as advance directives. Some countries have found it necessary
to put advance directives into a legally proscribed form. This
helps in interpretation and avoids the danger of sweeping generalisations
like "I am not to receive any life sustaining treatment if
I suffer ...pre senile dementia " (Voluntary Euthanasia Society).
An advance directive, in our view should be at least as informed
as ordinary consent to treatment. That written long ago and without
informed knowledge could not come up even to the normal standard
required of written consent to treatment. There will be problems
of interpretation. Even testamentary wills are often disputed;
one reason being the possibility that a person was acting under
duress. This could apply to advance directives also. Being made
in the past do they reflect the patients current views? They
may well lead to delay, dispute and prevent good medical
treatment being given. Since the controversial Bland judgement,
tube feeding has been called "medical treatment" and
therefore can be withdrawn or withheld. This bill if enacted would
give force to advance decisions, including decisions to refuse
"treatment" including food and fluids. This would therefore
lead to the possibility of euthanasia by omission with statutory
approval. It is not good enough to narrowly define euthanasia
as 'an active intervention to end life' the favoured definition
of the Department of Health.
(b) The Bill does not meet the common situation of
attempted suicide. A verbal or written statement may be discovered,
possibly made at a time when the mind of the patient was disturbed.
How should accident and emergency staff or ambulance staff
respond when the patient has left a verbal or written instruction not
to be treated? Non-treatment may result in suffering
or an unpleasant death or adversely affect survivors resulting
in permanent brain damage. Despite this problem being raised in
a number of submissions to the Law Commission and Lord Chancellors
Department and earlier parliamentary submissions, there is nothing
in this Bill indicating that these everyday problems have been
We would like to see a specific clause dealing with suicide, and
which is compatible with The Suicide Act and which takes
into account the recent judgement of HMG v Pretty 2001.
(c) Medical advances that may be unknown to the patient may be
excluded by an advance directive. There can also be unforeseen
consequences from refusing treatment, for example an elderly
person who refused "all operations", and who subsequently
lost their competence. If they fractured a hip it would result
in them becoming bedridden and possibly dying from infected bedsores,
as in times past. Legislators rightly seeking to advance patient
autonomy, need to be aware that a position which permits of no
derogation could lead to suffering of the sort
no reasonable person would have knowingly chosen for
themselves. Indeed in the worse case scenario it could
result in them being reduced to that very state that they
most wanted to avoid.
(d) One of the greatest causes of anguish is unrelieved thirst.
Unfortunately since the case of Airedale NHS Trust v Anthony Bland
1992 declared it to be lawful to remove the feeding tube
from an insentient patient, there have been numerous such removals
from the sentient and even the non dying to their great distress
and the understandable concern of their relatives. We are aware
of self-help groups who have built up dossiers of hundreds of
such cases. It seems to us that the incorporation of Baroness
Knight's Patient's Protection Bill into the Bill would
avoid this danger.
8 Where sustenance is concerned, we argue that for those
who are sentient and cannot swallow, there should be a presumption
in favour of life. This presumption would yield only if medically
assisted feeding was incapable of achieving its purpose, or was
disproportionate or excessively burdensome in itself. We do not
consider that it is possible or desirable to attempt to place
a value on another's life such as to judge it not worth living.
We are very aware that persons, even those with multiply disabilities,
can have a happy life if their needs are met. Proof of this
can be seen in numerous chronic care settings, hospices and
the day to day life of the disabled in society.
9 Disagreements over health decisions will inevitably arise
either from the family or medical team. We would like to
see an automatic right of publicly funded and timely appeal to
a court of protection. We are not persuaded that the Bill as drafted
provides for that, bearing in mind the imbalance between families
and public authorities where in accordance with Article 6 of
The Human Rights Act there is a requirement for equality of arms
(i.e. equal representation).
Sec 1, 30;
10 The absence of a definition of competence in the Bill
itself is a serious deficiency. There is much case law on
this already and the Bill will also need to be consistent
with other measures and laws concerning competence. Without a
definition in the Bill it is not possible to judge the effects
of the Bill. The absence of such a definition could result in
powers being taken which are beyond those intended by Parliament.
In connection with this we do welcome the recognition in the Bill
that competence may be both lost and recovered as a result in fluctuations
Above all we wish to see a safe Bill and
if the ethical and clinical problems mentioned above,
cannot be resolved we would urge legislators not to enact that
part of the Bill where existing case law is sufficient.
Dr Anthony Cole,
JP FRCPE FRCPCH,
Medical Ethics Alliance.
106a Battenhall Rd
WR5 2BT Tel/fax: 01905 352967