JOINT ETHICO-MEDICAL COMMITTEE
of
THE CATHOLIC UNION OF GREAT BRITAIN
and the
Guild of Catholic Doctors
Submission to the Lord advocate in reply to the Scottish Law Commission paper No. 151. - Report on Incapable Adults.
The Joint Ethico-Medical Committee is composed of members drawn from the two parent bodies, the Catholic Union of Great Britain and the Guild of Catholic Doctors.
The Catholic Union is an organisation of the Catholic Laity which is not affiliated to the hierarchy and which represents the Catholic viewpoint, where relevant, in Parliamentary and legislative matters. The Guild of Catholic Doctors represents Catholic Medical Practitioners of the United Kingdom.
We refer to our previous comments to the Scottish Law Commission and others concerning proposals for the management of Mental Incapacity, and to the proposed Bill in the Report of the Scottish Law Commission No 151. 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. While the Law must seek to define the boundaries of acceptable medical practice we do not believe it is possible safely to legislate for every conceivable problem and difficulty which might occur. Consequently there is a risk of creating additional uncertainty and ambiguity, and we fear that the passage of such a Bill may 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 Statements in legislation.
Our particular concerns are over Advance Statements (which were not mentioned in your earlier consultation paper 94), deliberate ending of life in those not yet dead (at 41) and some aspects of involuntary (non-therapeutic) research (at 39).
In addressing your proposals on Incapable Adults we will, in the main, follow the layout of the draft Incapable Adults (Scotland) Bill.
3.23 We remain deeply concerned at the prospect of providers of services or facilities, such as the proprietors of private residential or nursing homes, having direct access to the money of the granter. There would be a very serious 'possibility of abuse and concentration of power in such appointments.' As we said in our previous submission 'it would seem to us to be quite wrong, and display a flagrant conflict of interests, if service providers...(ie Proprietors and Staff of private hospitals and registered nursing homes or residential homes) should have any direct access to the funds of patients under their care, unless under the most stringent supervision of an independent body. We do not feel that the safeguards intended in your proposals are adequate.
37.-(1) We are concerned that the definition of incapacity in this section ('who in the opinion of [the] person [responsible] is incapable of making or is incapable of communicating a decision about the medical treatment...') is too imprecise and left to one person's uncorroborated opinion. Non-communication is an easy 'back door' to making the diagnosis of incapacity. Furthermore, since incapacity may vary with time, it is possible by choosing the right time to arrive at almost any desired conclusion. This is of most serious import with respect to advance statements (q.v.) since there is no legal mechanism to establish, in cases of doubt, when the person has become sufficiently incapacitated for the 'statement' to come into effect. We consider that in this situation, at least, there should always be a "patient's advocate" to act on his/her behalf and to challenge, if necessary, the opinion of the 'responsible person'.
37.-(2) (b) We consider it inappropriate to place 'nutrition and hydration by artificial means' in the same category as 'ventilation'. The withdrawal of ventilatory support would normally only be envisaged if the patient were capable of breathing on their own or had already been shown to be brain-stem dead. Withdrawal of assisted nutrition and hydration is intended to be carried out when they are still alive, but are incapable adequately of feeding themselves. We dispute the view that assisted nutrition and hydration (eg by naso-gastric tube) is medical treatment and would suggest that it is normal patient care. Since these means, and even gastrostomy, are used simply to facilitate and expedite feeding and swallowing we believe they are predominantly a nursing activity.
37.-(4)(c) We agree with the necessity to obtain a consent from the Sheriff for non-therapeutic sterilisation.
37.-(5)(b) We note at 5.26 (recommendation 61) that an independent medical practitioner is specified. As abortion already requires the certificate of two doctors, but is in effect available on demand, the requirement for a 'second opinion' 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 also note that the rights of the foetus receive no recognition.
38. We do not accept that a guardian or welfare attorney ought to have the power to take any decision intended to lead to the end of the incapable person's life, nor to override clinical judgment, and we therefore agree with your proposals in this section to cope with such a situation. (5.39 & 6.130)
39. Non-therapeutic research, where any benefits are remote, unless of a purely observational nature should not be permitted on those who have never had the capacity to consent. In those who have had capacity we consider the consent of the nearest relative, after full explanation, should be considered valid, and would agree with your proposals. We would propose the introduction into the Bill of a specific requirement that the proposed research cannot be effectively achieved with persons who are capable of giving consent (as in your recommendation 75 (c)), and at (g) we would change the phrase 'express unwillingness' to 'has not previously expressed and/or does not indicate unwillingness to participate in the research'.
40. Advance statements are our major concern, and we regret that the opportunity to offer our views on them was not available at an earlier stage.
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 5.41), 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 (at least in England). 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 justifying such refusals 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. In addition, with respect to the demands of advance statements 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.
40.-(6) (a) & (b) We support your proposals here and at 5.52, 5.53 (69) and 5.54 (70) in the patient's and the public interest
40.-(7)(b) We are concerned that the requirements in the Bill, simply to disallow refusal of 'measures to maintain adequate standards of hygiene and... to relieve serious pain' 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 offer oral fluids and to continue existing ordinary measures such as insulin for a diabetic or tube feeding in one unable adequately to swallow.
We would assert, therefore, that advance statements 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 and 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.
Furthermore, in an emergency situation it should never be possible to invoke an advance statement in order to withhold treatment on the grounds that such refusal is in the patient's best interests. This is not so much because the patient 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 statements 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 statements in statute law are serious, and in particular the possibility in the Bill (40.-(2)(a)) of oral advance statements. The requirements proposed are less strict than those of a Will, in spite of the fact that here the expected outcome is death. In addition, 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. Although such incapacity may be temporary and fluctuating, once an advance refusal is signed it is in practice 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
Because the effects of an advance refusal are so much more serious than a Will, for such a document ever to be legally enforceable we consider that it would have to 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 requirements for a revocation should, however, 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.
In sum the salient dangers of advance statements would be (1) difficulties and ambiguities in drafting and interpretation (2) difficulty in defining incapacity and incompetence and the danger of '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.
Organ Donation. We expressed the opinion that transplantation of non-regenerative tissue should not be permitted and are pleased to note that you have not thought fit to permit it.
41. We cannot accept that the withdrawal of ordinary, simple or routine medical treatments, can be justified simply because they are considered by a bystander 'not to be of benefit to the adult' especially in conjunction with the statement at (4) that the prolongation of life is 'not necessarily of benefit to him'. We do not consider that life must be maintained at all costs and in all circumstances, but we consider that the deliberate withdrawal of simple life-sustaining measures, with the aim of ending the patient's life, is tantamount to murder (or suicide).
It seems that this section is intended to cover such situations as the persistent vegetative state and we note with concern that 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 that there is 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. If the patient is not dying no-one is entitled to decide that it is in their best interests to be dead.
If situations should arise where simple life-supporting measures may be 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 gives far too great a power to the doctor to be allowed to discontinue life-supporting measures even after consultation with colleagues (2). This is quite different from discontinuing artificial respiration or artificial cardiac 'support' in someone who is already brain-stem dead. Equally we do not think that a Court should be able to delegate its authority by appointing a guardian.
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.
Signed by:
President of the Catholic Union of Great Britain
Master of the Guild of Catholic Doctors
Chairman of the Joint Ethico-Medical Committee
References:
- 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.