Joint Committee on the Draft Mental Incapacity Bill Memoranda

From the Medical Ethics Alliance

Ms Francene Graham,

Scrutiny Unit,

Room G10,

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.

Sec. 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.

Sec. 40;
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 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.

Dr Anthony Cole,
Medical Ethics Alliance.
Reply to
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