16.Memorandum from the Medical Ethics
Alliance (MIB 183)
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.
Sections 23, 24, 25
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 considered. 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 (ie equal representation).
Section 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 in health.
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.