JOINT ETHICO-MEDICAL COMMITTEE
The Catholic Union of Great Britain
Response to the Scottish Office
Managing the Finances and Welfare
of Incapable Adults
Paragraph numbers refer to those in the original consultation document
2.41 We regret that the Government rejects the overriding principle of best interests (though they refer to it at several places in the document (eg Question 30)). More seriously the Scottish Law Commission (SLC 151 at 2.59) also rejected it in the context of medical treatment. Elsewhere we have suggested that the three most important 'best interests' for any human being are the the preservation of life, the prevention of disability and the alleviation of pain and distress. Spiritual, psychological, moral and physical factors are also involved and we have emphasised the importance of external factors such as the existence of God, the laws of nature and the sanctity of life in establishing both the best interests of society and those of the individual. The concept of 'Benefit to Adult' (SLC 151 at 2.51) would seem to differ only in name.
3. This committee has not had time to address the new questions in this chapter, but on Question 8 I believe it would be their view that provision should be made for the regaining of capacity.
5. It still seems very surprising that those who are to provide care are also to be allowed to have charge of a client's money. Commenting earlier on SLC 151 at 3.23 (& Part 4) we said '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 [resident]. There would be a very serious 'possibility of abuse and concentration of power in such appointments,'...'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 remain concerned that the proposed safeguards are inadequate.
I believe our answer to both Questions 15 and 16 would be 'yes', and that (Q 15) there should be a check on fitness before any such registration.
6. When we commented on SLC 151 at this point we expressed concern that at 37 -(1) in the draft Incapable Adults (Scotland) Bill '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'.'
In addition at 37.-(2) (b) of the draft Bill, which expands on Recommendation 58 (2) we considered 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 [, was irretrievably in the process of dying] 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 (in the presence of a naso-gastric or gastrostomy tube) is medical treatment and would suggest that it is basic patient care. Although insertion of such tubes may raise the issue of consent, since these routes are used simply to facilitate and expedite feeding and swallowing we believe their use is predominantly a nursing activity.
Question 26 I think we misunderstood the implication of the previous proposals for prior authorisation by the Sheriff Court and in view of 'the importance to the individual of the question' would support leaving such matter with the Court of Session.
Recommendation 61 and Question 28 Our opposition to the termination of pregnancy will be known, but in this section we are concerned at the lack of clarity in the reference to an independent medical practitioner. We previously said '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 [now blue] 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 interests and rights of the unborn receive no recognition.
Recommendations 66 & 67 (Questions 35 & 36). We do not accept that a guardian or welfare attorney should 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 situations.
Recommendations 68 - 74 The terminology in this area is complex, but we will attempt to address some of the current usages. 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 in SLC 151 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.'
In short, we assert that advance statements may be indicative but never prescriptive. We do not believe that a patient's best interests can safely be served by a general and all-embracing 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.
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 would, to us, be suicide or murder and quite unacceptable. The distinction lies between refusing treatment because it is is burdensome in itself (and possibly also futile) and refusing treatment because of the opinion that life is not worth living or (with an advance directive, worse still) because it is thought (well in advance when the situation cannot possibly be foreseen) that it will not be worth living. We do not think it right, therefore, 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. It is, and should rightly remain, illegal to aid and abet a suicide.
Euthanasia is an act or omission which of itself intentionally ends life. We consider that no general advance refusal of treatments should require a doctor to act or to omit an act contrary to his or her clinical judgment or to the law.
Recommendation 71. We are concerned that the requirements in the draft Bill (at 40-(7)(b)), 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.
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. Autonomy is subject to the law of God. 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. If advance directives are allowed to override clinical judgement then the doctors' expertise will become redundant and the medical and nursing professions demoralised.
Questions 37, 38, 43 The effects of an advance refusal are so much more serious than those of a Will that if such a document were ever to be legally enforceable 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. We accept that revocations of advance directives should be oral, but suggest these be made in the presence of at least 2 people.
Question 41 We would support all the LC recommendations, particularly at 69 & 70. We suggest the addition of 'or the offering of oral food and fluid' to 71 and the removal of any 'age' limit for the foetus in 73.
In sum, as we see it the salient dangers of advance statements would be (1) difficulties and ambiguities in drafting and interpretation, (2) difficulties in defining incapacity and incompetence and the danger of 'declaration' of incapacity when in fact confusion is only temporary, (3) difficulties in withdrawing an advance directive once it has been brought into effect, (4) the unintended exclusion of treatment of remediable conditions and avoidable deterioration in the condition of a patient who survives, (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.
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.
Question 44 We consider the distinction between therapeutic and non-therapeutic research to be essential. (Question 45) As it would appear that the distinction between medical practice and medical research (quoted in SLC 151 at 5.63) is virtually the same, there should be no need for further definition. (Question 46) Therapeutic research is 'justified' on a risk/benefit balance, and the 'minimal foreseeable risk' applies only to non-therapeutic research.
In the case of incompetent persons, therapeutic research may be undertaken, with consent from such persons as may be able to give it on their behalf, provided there is a reasonable prospect or likelihood of benefit to the subject (ie. is in their best interests).
Non-therapeutic research (in which any benefits are non existent or remote), unless anonymised or of a purely observational nature, should not be permitted on those below the statutory age of consent, or those who have never had capacity. In those who previously have had capacity, where the research cannot be effectively achieved without the participation of persons who are or may be without capacity to consent (but who at the same time do not show, nor are known to have shown, any present or prior objection), carries negligible risk, is desirable in order to provide knowledge of the causes or treatment of, or of the care of persons affected by, mental disability, and is into a condition from which the subject suffers (and not merely 'may suffer'), we consider that the consent of the nearest relative, after full explanation, may be considered valid. We do not consider it sufficient justification for such research that it is merely 'not against the best interests' of the subject.
Question 47 A national ethics committee could be of help to the local research ethics committees in carrying out more detailed analysis of proposed research projects. The currently proposed regional ethics committees in England are intended to offer guidance to, but not to override, the local research ethics committees in making their decisions. We suggest that a national ethics committee should have a relationship of this sort with LRECs.
Question 51 We agree that 'does not appear unwilling' (in 75 (f)) should be replaced by 'has not previously expressed and does not indicate unwillingness to participate in the research' or a similar phrase.
Withholding or withdrawing medical treatment.
My committee would have to disagree with both the Law Lords in the case of Tony Bland, and the Inner House of the Court of Session (Law Hospital NHS Trust v Lord Advocate) on the withdrawal of food and fluids. We do not consider that life must be maintained at all costs and in all circumstances, but we do consider that the deliberate withdrawal of simple life-sustaining measures, with the aim of ending the patient's life, is euthanasia.
Recommendation 76 (& 77) We cannot accept that the withdrawal of ordinary, simple or routine medical treatments can be justified simply because they are considered by a bystander as 'unlikely to benefit the patient' nor that it is ever possible to say that 'J truly had no interest in being kept alive' (Law Hospital NHS Trust v Lord Advocate: Current Law June Digest 1996, p 245).
As explained above, in relation to advance directives, we would consider that a treatment could be discontinued or withheld if it is in itself burdensome to the patient, whether or not it is also futile. We do not consider that assisted feeding (once an appropriate tube is in place) is medical treatment but, as it merely involves pouring food and fluids down a tube, basic nursing care. Furthermore, in our view, to withdraw feeding with the deliberate purpose, aim or intention (words used in the Bland judgment) of ending life is incompatible with your stated opposition to euthanasia (6.28).
Question 52 In our earlier comments on LC 151 we noted with concern that that this section did not follow the recognised guidelines for brain stem death, and laid down no criteria for length of unawareness or for establishing that there was no prospect of recovery in cases of PVS. As you point out (6.44 (g) & footnote), it is now considered that a period of at least 6 months or 1 year (depending on aetiology) is required to establish a diagnosis of persistent vegetative state. This section (in LC 151) appeared to rule out the proper management of potentially recoverable cases and permit their premature demise. The danger remains that 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. The people considered here are not dead: this is euthanasia 'by omission'. We do not consider that the courts should be left to develop the procedure established by the Law Hospital case to cover other situations.
Questions 53, 54 In situations which 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 such measures even after consultation with colleagues. 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 believe that all such cases should be referred to court, where they should be heard in open session, and are concerned that the courts should have access to competent sources of medical and ethical advice.
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.
31st May 1997
Chairman, Joint Ethico-Medical Committee