Joint Ethico-Medical Committee
Union of Great Britain
The Guild of Catholic Doctors
The Lord Chancellor's Working Group
on the Law Commission Report No. 231
We refer to our previous comments to the Law Commission and others concerning proposals for the management of Mental Incapacity, and to the proposed Bill in the Report of the Law Commission No 231. The proposed Bill seeks to address many complex issues that have hitherto been dealt with by doctors within the context of a personal doctor-patient relationship based on mutual trust and understanding and grounded in ethical principles that have stood the test of time. Whilst it is incumbent upon the Law to define the boundaries of acceptable medical practice we do not believe it is possible safely to legislate for all the complexities and wide variety of difficulties which may be encountered. There is a risk that, since the proposed legislation cannot provide a comprehensive code in this difficult area, it might serve to create additional uncertainty and ambiguity. Indeed, we anticipate that the passage of the Bill would substantially increase, rather than decrease, the work of the Courts.
We agree with the conclusion of the House of Lords Select Committee on Medical Ethics that a rational development of the relevant common law, together with the implementation of Codes of Practice from the appropriate Royal Colleges would prevent many of the draw-backs of enshrining the practice relating to Advance Directives in legislation.
In particular we fear that patients may inadvertently and unintentionally preclude themselves from receiving proper treatment for an illness, and hence suffer more serious subsequent handicap or earlier death than should have been the case or than they would have wished. It also appears that doctors might be forced to act against sound clinical practice because of a contrary Advance Directive or the will of an Attorney with continuing powers, and even that the giving of proper nursing care might be prevented. Such conflicts between clinical judgment, best interests, and the strict implementation of an advance directive could bring doctors and nurses into conflict with the law.
Specifically the proposed Bill allows the deliberate ending of life in those who are not yet dead (at 10 (1) whether or not they have signed an advance directive), the removal of organs for donation without prior consent (ie, if there has been no prior refusal at 7(2)(b)) and involuntary (non-therapeutic) research on the mentally incapacitated (at 11).
In addressing the Law Commission proposals on Mental Incapacity we will follow the layout of the draft Bill (Law Com. No 231)
Section 2 (1) (a) & (b) We accept the definition of incapacity, though, in spite of (5), 'inability to communicate' will be easy to allege and much harder to prove. This clearly depends on the effort made (at 5) to facilitate communication, but in any event may fluctuate. The danger is that non-communication becomes a back door to defining incapacity. By choosing the right time it could be possible to arrive at almost any desired conclusion about capacity. In spite of (4), in practice the best test of comprehension is, of course, to observe a rational decision as outcome - ie. one that might be arrived at by a person of ordinary prudence.
The phrase 'broad terms and simple language' (3) is too imprecise. In any case it could not obviate implicit pressure from doctors, nurses, relatives or carers, for the patient to decline otherwise appropriate treatment.
Even if an advance directive has been properly signed and witnessed what legal mechanism is there to be to establish, in cases of doubt, when the person has become sufficiently incapacitated for the directive to come into effect? We consider that in such a situation there should be a "patient's advocate" to act on his/her behalf (as well as such bodies involved in decisions at 10 (7)).
As noted below (at 9 (6)) we are also seriously concerned that lawyers apparently find it easier to decide that an advance directive is in operation than to allow its withdrawal.
Section 3 We support the principle that anything done for, and any decision made on behalf of, a person...shall be done or made in his best interests.
However, we find the attempted definition of best interests (at 3 (2)(a-d)), which seems simply to seek to establish the patient's wishes, to be completely inadequate. We approved the draft proposals in Paper 129, but the references there (at Proposal 12 (3)) to life expectancy, health, happiness, freedom and dignity have now been omitted. Equally spiritual, psychological, moral and physical factors, which we had mentioned in our comment receive no mention, and any reference to external criteria such as the existence of God or the sanctity of human life is lacking. While we agree that the four matters presently listed should be taken into account, we regard them on their own as essentially incomplete. The three most important 'best interests' to be taken into consideration for any human being have always been the preservation of life, the prevention of disability and the alleviation of pain and distress. We endorse 3 (3) subject to our definition of best interests, but we do not consider that 'best interests' could ever be an acceptable reason for ending life. We agree (with the statement at Part V, 5.13) that 'reasonable treatment which is in a person's best interests' must always be lawful.
Section 6 We do not accept that a manager or attorney ought to have the power to override clinical judgment, nor to take any decision intended to lead to the end of the incapable person's life. (See our comments at 9 (1) third paragraph)
Section 7 (1) (b) We do not consider that a manager should be granted the power to agree to a sterilisation, nor that anyone should be entitled to permit procedures such as tissue donation or non-therapeutic experimentation, or treatments or procedures to facilitate such donation, which are not for the benefit of the incapacitated person.
(2) (c) We consider it inappropriate for the Secretary of State to have the power to add other treatments and procedures to the list of those permitted under court order by statutory instrument.
Section 8 (3)(c) As abortion already requires the certificate of two doctors, but is in effect available on demand, the requirement for a certificate from an independent medical practitioner is an inadequate safeguard. If a third opinion is intended, then this must be specified, since otherwise the second opinion could also be one of the two opinions on the 'green form', approving the need for the operation under the terms of the Abortion Act 1967, but not adequately addressing the specific need for consent on behalf of the incapable person. We note that the rights of the foetus receive no recognition.
(3)(d) We do not consider that the certificate from an independent medical practitioner is sufficient safeguard for any sort of sterilisation 'for relieving existing detrimental effects of menstruation': there is a danger this will be adduced as the purpose in cases where the real aim is to control fertility.
Section 9 (1) We consider the advance expression of views and preferences, or what Lord McColl called an 'advance declaration', could be helpful to doctors and other carers. We equally accept that an advance decision in favour of a particular treatment (etc.) should not be binding (as at Part V, 5.6), nor require a doctor to carry out a positive act which is illegal or contrary to his or her clinical judgment. However, we fear that if advance refusals which override a doctor's clinical judgment are accepted, then the right to insist on positive measures may swiftly follow, i.e. what we might call 'advance demands.'
With regard to advance refusals we would distinguish between specific and more general refusals of treatment. The right to refuse a specific treatment before it has been begun because the treatment itself is unacceptable, though possibly foolish and foreseeably fatal, we would respect even if we did not agree with it. On this basis we would accept the Jehovah's Witnesses' refusal of blood transfusions.
A general refusal of treatment(s), or a demand for their withdrawal, particularly simple treatments already begun, (eg. insulin from a diabetic or tube feeding from someone unable to swallow) with the intention, purpose or aim of ending life (and not because such measures were in themselves inappropriately burdensome) would, to us, be suicide or murder and quite unacceptable. We do not think it right that anticipatory decisions requiring the withdrawal of a particular treatment (etc.) should be made binding in law because we do not consider it morally right for a person deliberately to end their own life, albeit legally permissible. It is, and should rightly remain, illegal to aid and abet a suicide. Life can be ended by omission or withdrawal of ordinary measures to treat illness or to support life, just as by a positive action. This is euthanasia just as clearly as a positive act. We consider that no general advance refusal of treatments should require a doctor to act or to omit an act contrary to the law or to his or her clinical judgment.
The argument from autonomy is false because no society can survive if its members exercise absolute autonomy. Society has an overriding interest in the preservation of the lives and the good health of its citizens. For us also autonomy is subject to the law of God. With respect to the demands of advance directives the principle of self-determination applies to the doctor or nurse, just as to the patient: the one cannot override the other, and neither the patient nor society can require the doctor or nurse to carry out an evil act or to omit an action which the 'duty of care' demands.
We would assert, therefore, that advance directives may be indicative but should never be prescriptive. We do not believe that a patient's best interests can safely be served by a general or conditional decision taken years in advance, which can limit treatment and override clinical judgment at a time of grave illness and in circumstances which could not have been foreseen when the decision was made. Adequate counselling for such a decision is impossible, and no such decision could ever reach the standard currently expected for fully informed consent.
In an emergency situation no advance directive ought to be able to refuse treatment in the patient's best interests. This is not so much because they might die but rather because they might survive in a more impaired condition than would otherwise have been the case, or treatment for an otherwise remediable condition might inadvertently be excluded. For example, if a period of a year may be required prudently to diagnose PVS (Persistent Vegetative State), advance directives could preclude the possibility of excluding other diagnoses. We do not consider that any doctor should ever be held liable for giving treatment which he considers to be in the patient's best interests.
Practical difficulties with the present proposals to enshrine advance directives in statute law are serious. The requirements proposed are less strict than those of a Will, in spite of the fact that here the expected outcome is death. The difficulty in defining capacity and competence, both medically and legally, can easily lead to a denial of the patient's right to withdraw an advance refusal. Such incapacity may be temporary and fluctuating: once an advance refusal is signed in practice it is almost impossible to revoke it. In a recent case in Florida1 a woman who had had a stroke, and whose attorney said she had refused tube feeding in advance, was apparently not given food and fluid by mouth, for which she was pleading, on the grounds that she was not competent to make a decision concerning the risk of aspiration nor to revoke her advance directive. Other mishaps have also been reported, in one case preventing surgery to relieve painful obstruction in a case of terminal cancer2 and in another simple cardiac resuscitation for someone who collapsed after a straightforward orthopaedic procedure.3
Hence the salient dangers of advance directives would be (1) difficulties and ambiguities in drafting and interpretation (2) difficulty in defining incapacity and incompetence and the 'declaration' of incapacity when in fact confusion is only temporary (3) difficulty in withdrawing an advance directive once it has been brought into effect (4) the unintended exclusion of treatment of remediable conditions (5) the exclusion of new methods of treatment and (6) the demoralisation of doctors and nurses by rigid legal imposition of written requirements which are clearly clinically wrong and which (with the patient now incompetent) no-one can rescind.
(5) Because the effects of an advance refusal are so much more serious than a Will, for such a document ever to be legally enforceable it should be properly signed and witnessed at least to the same standard of proof as a Will. One, at least, of the witnesses should be required to certify to the capacity of the testator at the time of signing. The criteria here presented are unsatisfactory and, even if legally acceptable, do not resolve the question of validity. (Part V, 5.22 'Statutory provisions cannot resolve the problems and questions which may arise in relation to the validity and applicability of advance refusals.') The requirement for a revocation (6) should be less stringent than that for putting it in place. Oral advance directives, as opposed to contemporaneous decisions, given the circumstances in which they might be made and the risk of misrepresentation, should only be acceptable as a general indication of the patient's wishes, and not legally binding.
(7) (a) & (8) We consider the definition of 'basic care' to be minimalist and inadequate. The requirements in the Bill fall well below the standards of medical and nursing care at present expected in our hospitals, hospices and nursing homes. 'Basic care' ought to include a requirement to continue existing ordinary measures such as insulin for a diabetic or tube feeding in one unable adequately to swallow. We consider that a court ought to have the right to override a valid and applicable anticipatory decision in the exercise of its "best interests" jurisdiction (against Part V, 5.36).
Section 10 (1) We note with concern that this section does not follow the recognised guidelines for brain stem death, and lays down no criteria for length of unconsciousness or for establishing no prospect of recovery. The people considered here are not dead: this is euthanasia 'by omission'. It is generally accepted that a period of at least 1 year is required to establish a diagnosis of persistent vegetative state, but this section appears to rule out the proper management of potentially recoverable cases and permit their premature demise. The need for donor organs or a general shortage of resources could well lead to unseemly haste to discontinue treatment, and it could be foreseen that one doctor's clinical judgment (that a patient might yet recover) could be overridden by another who was more concerned with resource management or seeking donor organs. We specifically repudiate, in relation to an acute case, the statement at Part VI, 6.20 'In an acute case, it may well be obvious that it is in the best interests of the patient for sustenance to be withdrawn, so that he or she does not recover consciousness to live in temporary pain and distress and then die shortly thereafter of severe and incurable injuries or illness.' If the patient is not dying no-one is entitled to decide that it is in their best interests to be dead.
(2) If situations should arise where life supporting measures are deemed too burdensome for the patient and their discontinuance is to be permitted by law, we consider that the authority of the court should be necessary in every case. In our view it puts far too grave a burden on the attorney and his conscience to have to give such consent and we consider that the certificate from an independent medical practitioner would trivialise such life and death decisions and presupposes a medical practitioner whose interests do not necessarily coincide with the best interests of the patient. We oppose allowing the Secretary of State to have or delegate such responsibility, or being able (4) to authorise non-therapeutic interventions, which should never be a matter for a politician, let alone his delegate. Equally we do not think that a Court should be able to delegate its authority to an appointed manager.
(4) We oppose any treatment of an unconscious or moribund person in any way where the treatment is based, not on his or her best interests, but on those of others. We would, therefore, exclude ventilation, etc. to preserve organs for possible transplant unless the patient is already dead and proper consent has been given. As it stands this section would appear to allow the possibility of live donor organ transplants without the consent of the donor.
Section 11 (1) Non therapeutic research where any benefits are remote, unless of a purely observational nature, should not be permitted on those below the statutory age of consent. In those who have had capacity, where the research carries negligible risk, is into a condition from which the subject suffers, and criteria 3 (a) (b) and (c) are fulfilled, we consider the consent of the nearest relative, after full explanation, should be considered valid provided there is no known present or prior objection by the subject.
(1)(a) Such research should only be permissible on those known to have the disease, not merely those who 'may be affected'.
22nd July 1995
President of the Catholic Union of Great Britain
Master of the Guild of Catholic Doctors
Chairman of the Joint Ethico-Medical Committee
- In the Circuit Court of the First Judicial Circuit in and for Okaloosa County, Florida (95-4-PSA), and Northwest Florida Daily News, 23 and 24 March 1995.
- Rosner, F. Living Wills [Letter] Lancet 1994; 343: 1041.
- Smith, W.J. in The Wall Street Journal, 4th May, 1994.