Joint Ethico-Medical Committee
of
The Catholic Union of Great Britain
and
Guild of Catholic Doctors
Response to Law Commission Consultation Paper No 129.
Mentally Incapacitated Adults and Decision-Making:
Medical Treatment and Research.
Following our submission to the Law Commission on Consultation Paper No.119 and our letter in reply to Consultation Paper No 128, we submit our views on Consultation Paper No 129. Mentally Incapacitated Adults and Decision-Making: Medical Treatment and Research.
We are concerned, from a Christian perspective, that there must be justice, that is equitable treatment, for all humans regardless of their capacity for choice, disease or handicap, and to emphasise that all human life (including unborn life) has value. Everyone has the right to make his own decisions to the maximum of his capacity: the responsibility of the state is normally limited to making decisions for the common good.
When determining the capacity of an individual to make health decisions the presumption must be in favour of normality: any incapacity must be convincingly established. We commend the United Nations declaration on the Rights of Mentally Retarded Persons (1971) which states that the mentally retarded person has, to the maximum degree feasible, the same rights as other human beings. This was also reaffirmed in November 1992 at a congress on "Handicapped persons and society" held by the Pontifical Council for the Pastoral Care of Health Care Workers.
Assuming responsibilities is part of the fullness of life just as is enjoying its benefits. The mentally incompetent should be enabled to inform themselves as fully as possible of the morally relevant facts and moral norms and to accept responsibility insofar as they are able to do so.
Part I
We have already (our reply to Part II of Paper 119) given our support to the need for a legal mechanism for giving valid consent on behalf of adults who lack the capacity to do so. In so doing we were primarily concerned with those who had never had such capacity and were never foreseeably likely to have it. We endorse the views in Paragraph 1.4 of the present Paper: we agree that the incapacitated should not be seen or treated as second class citizens (1.7) but equally that they should not be subjected to unnecessary or unwanted treatments (1.8). We consider that it is no part of the functions of the court to allocate scarce resources (1.9). We regard nutrition and hydration as being neither medical nor even nursing treatment, but as meeting a basic human need (1.10). We note that no change in the present criminal law of homicide is presently envisaged (1.13).
Part II
We prefer the cognitive or function tests of 2.3 and 2.9, using the term mental disorder as in the Mental Health Act 1983. We fully agree that capable patients are legally entitled to refuse any treatment, even if death is the immediate consequence. (2.1) It does not follow that such a choice will be morally right or even morally neutral, nor that the patient can override, or impose legal constraints on, the ethical beliefs of the treatment provider (3.12).
It would also draw attention to the position of those of the caring professions whose ethical beliefs preclude participation in any act or omission which does not respect the principle of the sanctity of life. Conscience is an essential part of autonomy, and the conscientious rights of doctors, nurses and other staff must always be respected and fully protected in any legislation
We are deeply concerned that in the case of Airedale NHS Hospital Trust v Bland (1993, 2 WLR 361) the Law Lords, or at least a majority of them, seem to have accepted the proposition that those who have the care of patients in a condition such as the judges had described might rightly adopt a pattern of care with the intention, purpose or aim of terminating the lives or bringing about the deaths of those patients. ("the proposed conduct has the aim... of terminating the life of Anthony Bland...","the conduct... is intended to be the cause of death" (Lord Mustill at 389,397): "the whole purpose of stopping artificial feeding is to bring about the death of Anthony Bland" (Lord Browne-Wilkinson at 383): "the intention to bring about the patient's death is there" (Lord Lowry at 379): "since it will (as it is intended to do) cause his death" (Lord Goff at 375). To us, to act with such an intention, whether it be by commission or deliberate omission, is gravely wrong, just as it would be morally wrong for a competent patient to refuse treatment or care in order to end their own life. As the latter would be suicide, so the former is involuntary euthanasia.
On the other hand we would like to make it clear that we do not expect treatment to be given or accepted when it would, in itself, be disproportionately burdensome (in respect of any foreseeable benefit). We believe it to be the majority Catholic opinion, and indeed probably that of most of the medical profession, that tube feeding is basic care (and not medical treatment). Although there are some, even of our faith, who take the view that in such circumstances as those of Tony Bland tube feeding would be disproportionate (ie. seriously burdensome) and therefore not obligatory, nevertheless, the adoption of a pattern of care with the deliberate intention of ending life is contrary to Catholic teaching.
It is therefore our serious concern that, whereas a person could (however wrongly) take a course of action which would lead to his own death, no other person (whether relative, appointed representative, or interpreter of an advance directive) should have authority intentionally to choose death on behalf of another. To us this would be morally, if not legally, murder and we consider that the House of Lords judgment (in the case of Tony Bland), whether by intention or oversight, has in fact (given the terms employed in the judgment) sanctioned euthanasia.
In short we do not accept that a best interests argument (even if used to argue that a patient could have no best interests, as was suggested of Tony Bland (your footnote 54 on p 108)) could ever be properly turned around to suggest that deliberately to end a life was in the best interests of that patient. We entirely endorse your statement at (1.8) that there is a need to protect those who cannot protect themselves from unnecessary or unwanted treatments, but even more so from the involuntary withdrawal of life sustaining measures (active euthanasia by omission).
Part III
3.2 We do not see how an advance directive could safely be written which could specify that in a particular event the patient is 'not to be given medical care, including artificial feeding, designed to keep him alive' when the writer cannot possibly foresee, at the time of writing, the circumstances which will obtain (see below 3.7, 3.13). We certainly endorse the need for special care 'to ensure that the prior refusal of consent is still properly to be regarded as applicable in the circumstances...'
3.4 We accept that the individual's right to self determination is paramount but subject to his exercising that right within the boundaries of the moral law and with due respect for the rights of others. Autonomy cannot be completely unfettered if society is to survive.
3.7 Our concern would be that the "applicable in the circumstances" criterion could only rarely, and in a minority of cases, be verifiable. This would certainly seem to us to be almost inevitably true of prior refusal of life sustaining treatment (3.8), and we therefore oppose the use of advance directives with this intention.
3.9 We find it difficult to understand Lord Goff's statement (as quoted, AELR 1993,1: 866 f: 2 WLR 316) that there is no question of a patient who declines treatment under an advance directive having committed suicide. We think Lord Goff must mean that signing an advance directive is not necessarily a request for suicide, but we would respectfully point out that the wording of at least one currently proposed advance directive appears actually to intend this. There is no obvious barrier which could prevent advance directives envisaging 'provisional' or 'conditional suicide' nor the appointment of a medical treatment attorney encompassing suicide by proxy. We would abhor any implication that a doctor should be expected to collude in assisted suicide.
3.10 We are opposed to your proposal 1. that legislation should provide for the scope and legal effect of anticipatory decisions. We agree with the British Medical Association that 'mutual respect and common accord is better achieved without legislation' (ibid, p30). Furthermore if advance directives are to have legal power then the decisions of the caring team will be constrained by a document, the relevance of which to a particular situation may be uncertain, and which may even require legal clarification. In this latter situation the paradoxical outcome may be that burdensome measures may have to be instituted or continued, until the situation has been clarified, in order to avoid the possibility of litigation. We would not normally anticipate any conflict between the expressed wishes of a patient, whether written or verbal, even in the absence of legal enforceability, and the care that doctors and nurses would wish to give. We see no reason to argue, from the practice in other countries where the medico-legal environment is quite different, to proposing legal changes in our own.
We note your comment that "following the dicta of the House of Lords in Airedale NHS Hospital Trust v Bland it appears that it may be possible to make an advance directive which is legally binding" and submit that further legalisation is therefore unnecessary. We would argue that advance directives may be indicative but should never be prescriptive.
3.13 We agree that a decision based on false assumptions would be vitiated, but we do not see how, in the case of an unconscious patient, it would be possible to show what his assumptions were at the time of his writing (see 3.19 below). We are worried that the "applicable in the circumstances" clause would in practice be ineffective or difficult to interpret. How could one ever be sure, as the BMA suggest, that the patient had been adequately informed about the currently existing situation, that their directives were not based on false assumptions or that an unannounced 'change of view' had not taken place?
The danger would seem to be that of inextricable legal tangles at a time when these are the last thing anybody wants. We do not think the escape clauses in 3.13 would cope with the problem. Medical decisions can be difficult enough without having to be wary of legal snags and pitfalls at every turn. Any mechanism to which cases might be referred would therefore have to be swift and simple. We think it appropriate to point out here that one reason why the Tony Bland case was handled as it was, with the use of antibiotics for an infection and (we understand) more than one surgical intervention, was because the local coroner apparently insisted that every possible treatment must continue to be given.
Hence we are doubtful of the validity of advance directives which must be drafted when the future events to be encompassed are inevitably unknown and unpredictable. Account should be taken of the reasonable wishes of the patient, but decisions made in advance, without foreknowledge of the conditions which may arise, cannot be determinative. In other words, advance directives can never reach the high standards of informed consent which are currently required in medical practice. Can we be sure the patient would have made this choice if he had known precisely what was going to occur? In our opinion it is not possible to devise a form of advance directive which could cover all the circumstances, and any which were widely drawn in an attempt to do so would need to be accompanied by firm evidence that the patient had given fully informed consent to each circumstance and disease envisaged.
In consequence of all this we are not happy about 2 If a patient is incapacitated, and subject to the other proposals in Part III of this paper, a clearly established anticipatory decision should be as effective as the contemporaneous decision of the patient would be in the circumstances to which it is applicable.
We would find acceptable an anticipatory decision which confined itself to a general statement that disproportionate measures need not be employed.
3.14, 3.15 If anticipatory decisions were to be legalised we would prefer that no specific form be introduced. It could well be that those of a particular religious belief or ethnic background might wish to use a formula compatible with their own codes and standards. In the USA, where in some States hospitals are required to obtain advance directives from all patients on admission, Catholic (and no doubt other) groups have formulated advance directives to meet their own needs.
3.17 We agree that there should be a rebuttable presumption that a decision is not clearly established if it is made in a form which does not meet statutory requirements, but would point out that this is likely to mean that it was not a fully informed choice in the first place.
3.18 We would consider it the patient's responsibility to arrange for safe keeping of the original directive, in the same way as one is responsible for the safe-keeping of one's will. In view of what you say at 3.33 about the destruction of all copies of an advance directive, and the possibility that one or more might be overlooked and then implemented, contrary to the patient's revised wishes, we think that only one copy should be authentic, although the exhibition of a reproduction might suffice to indicate what the patient wanted, so long as it could be established that the original of it still existed unchanged. We envisage great difficulty for the treatment provider in verifying which is the latest and current version of an advance directive.
3.19 We consider that witnessing is essential and would propose that there should be two witnesses, one of whom should be a doctor. We consider that two witnesses are necessary not only to verify the signature, but to ensure that the patient had freely made a fully informed choice after understanding the implications expained by the doctor ("diagnoses, prognoses and realistic treatment options" BMA quoted at 3.20). In any subsequent uncertainty the witnesses might be expected to elucidate the patient's general intentions and wishes. We agree that the witnesses should not include the the patient's medical treatment attorney, the latter's spouse, or the patient's carer (in the terms envisaged by your Paper 128, section 2). We would hope thereby to exclude the maker's close relatives, those with an interest in the estate or those expected to provide the treatment in question.
3.21 As explained we are very unhappy that a proxy could be enabled to refuse treatment.
3.22 We do not believe that anticipatory decision making could be possible in such a way as to apply in every possible situation (see 3.13).
3.25 We agree that basic care should be excluded from the scope of an advance directive. We would envisage basic care as including warmth, ordinary nursing attention, including washing, toileting, offering nutrition and fluids by whatever means is appropriate, and 'cherishing'.
3.26 We are not happy with the use of the phrase 'artificial feeding', which might be taken to include such simple measures as spoon or cup feeding. Whereas we do not consider assisted hydration and nutrition to be appropriate in someone who is dying when it will only postpone inevitable death, nevertheless these measures (certainly at least hydration) must be employed if they would make that death more tolerable. Equally, if an individual is not dying and these measures allow living to continue, they should be employed. We refer to our comments on Part II (particularly our second and third paragraphs), and reiterate that the withholding of nutrition and hydration must never be done with the intention of causing death.
3.27 This is just the sort of situation we fear, and seems likely to arise under the terms of at least one recently proposed advance directive. Timely resuscitation could be precluded by such a document. The fact that 'safeguards' and 'a forum' are seen as necessary casts doubt on the entire validity of advance directives. If an incapacitated patient "objects" then the anticipatory decision would seem to us to be null and void.
3.28 This would seem to us to illustrate the need for a medical witness (see 3.19).
3.29 If advance directives are to be given legal status and - as we would wish in those circumstances - allowed to take any appropriate form, then it would seem a wise precaution that the judicial forum should have power to override them.
3.31 We think that a woman's right to refuse treatment should be restricted to allow for the rights of her foetus, which is also a human being. We agree with the quotation from the Scottish Law Commission (your footnote 98) and disagree with your footnote 129 which would exclude a foetus from your proposal 11.
3.32 While we understand the need for strict legal criteria for capacity to revoke, we would feel that these should be less strictly applied than those for the original signing.
3.33 See above 3.18.
3.34 Whilst it is true that there is no automatic revocation of a will after a fixed period it remains desirable for it at least to be reviewed from time to time. In view of the possible lethal outcome of an advance directive we would take the view that it should be automatically revoked after a period (perhaps 10 years) unless the maker specifically provides for it to last longer. We agree with the first sentence of 5.
3.39 The difficulty over assessing the patient's best interests is that the observer is always liable to work from what he would see as his own best interests in the circumstances. We note and support the definition of best interests by Lord Brandon (quoted by you at 3.46), and we note Lord Keith's comments on the same case (ibid). We also note that the BMA use Lord Brandon's definition modified by the need for it to be in accordance with a responsible body of medical opinion (Interim Guidelines for the Medical Profession: Medical Treatment and Incapable Adults, 1990)(see below 3.49 & 3.50). However, all this lacks any reference to external criteria such as the existence of God or the sanctity of human life and depends entirely on the untrammelled autonomy of the individual and subjective guestimates of what he or she might be feeling.
3.49 With respect to the assessment of best interests in Re J (A minor)(Wardship: Medical Treatment) ([1990] 3 All E R 936 f/g) Lord Donaldson M.R. also quoted with approval (apart from the phrase about imposing death) the formulation of Judge McKenzie 'It is not appropriate for an external decision maker to apply his standards of what constitutes a liveable life and exercise the right to impose death if that standard is not met in his estimation. The decision can only be made in the context of the disabled person viewing the worthwhileness or otherwise of his life in its own context as a disabled person - and in that context he would not compare his life with a person enjoying normal advantages. He would know nothing of a normal person's life having never experienced it.' The latter would not apply in the case of an adult who had become handicapped, but the assertion remains true, namely that no one can assess the quality of life of another, the more especially in this sort of situation. We would however, accept the formulation of your proposal 12. In deciding whether a proposed medical treatment is in the best interests of an incapacitated person, consideration should be given to:
(1) the ascertainable past and present wishes and feelings (considered in the light of his or her understanding at the time) of the incapacitated person;
(2) whether there is an alternative to the proposed treatment, and in particular whether there is an alternative which is more conservative or which is less intrusive or restrictive;
(3) the factors which the incapacitated person might be expected to consider if able to do so, including the likely effect of the treatment on the person's life expectancy, health, happiness, freedom and dignity.
We would reiterate our comment ( in our reply to Paper 119, page 3: Part II,para 5) (Catholic Medical Quarterly Nov. 1991, p18) that any substituted judgement must ultimately be limited, unless there is a clearly expressed prior decision by the patient in this or an exactly parallel matter, by the spiritual, psychological, moral and physical best interests of the patient.
3.50 We are concerned that any attempt to identify the 'unique reactions to the world' of an individual may be highly subjective and reflect only the prejudices, even the fantasies, of the interpreter. Any such interpretation must be firmly based in realism and common sense.
3.61 We see the danger of relatives 'making up' a patient's alleged choice as an example of the problems discussed in 3.50.
3.67 We are concerned by the proposal here and at 17 that any suitable person could be appointed to act as "nearest relative" albeit only for consultation. We believe this could be wide open to abuse and consider that any person appointed (by whom?) must be of the same background, both culturally and religiously, as the patient.
3.72 We consider your sentence 'however if the patient is actively objecting to the proposed treatment the statutory authority would be subject to a requirement to obtain independent confirmation that the patient is incapacitated' is incomplete and that the words 'in respect to the validity of their objection' ought to be added: that is to say that they must be shown to be too incapacitated to object validly to the particular treatment in question. The consent in footnote 196 would be actual and not implied.
Part IV
We agree with proposal 1. There should be a judicial forum with statutory jurisdiction:
(1) to make orders approving or disapproving the medical treatment of incapacitated patients; and
(2) to make decisions as to the patient's capacity or the scope or validity of the patient's own decisions.
Tribunals, such as the judicial forum envisaged below, or those appointed by them, who decide the capacity of persons to make decisions on their own behalf, should not be the same as those who give effect to them. They must operate within established guidelines and their judgment on incapacity should be subject to appeal. We strongly recommend independent advocacy for the incompetent person before such bodies. Legal aid, or other public means, must enable such advocacy to be effective so that their interests can be properly represented. We would wish to see advocates who truly reflect the cultural and religious background of the incompetent person accepted by the courts or tribunals. The decisions of such bodies should also be subject to appeal or review where independent advocacy can establish, as in the case of abortion, that a decision is at variance with the person's known religious or moral background. In a decision which could result in the shortening of life, a suitable time scale should enable all appeals to be heard at the level of the High Court of Justice, reflecting the gravity of these matters both to society and to the person concerned.
4.14 We are very anxious that no order of a court or forum should be able to override a doctor's clinical judgment, as you clearly state in this paragraph. We would therefore express our misgivings over the proposed power of a forum to take the care of a patient out of the hands of a doctor when there is a dispute over the ethics of a particular course of action.
4.18 We would suggest this matter could be left to the discretion of the judicial forum.
4.20 Whilst we agree that a treatment provider should need only to obtain the proxy's consent we wonder whether the proxy should not have an obligation to consult with the 'nearest relative'. This could mean that proposal 11 might need amendment:
If a medical treatment proxy has been appointed, a person proposing to provide treatment which is within the scope of the proxy's authority should be under a duty to obtain the proxy's consent, or the approval of the judicial forum, before that treatment is given. There should be no duty to consult the incapacitated person's "nearest relative" in relation to treatments within the authority of the proxy. We would suggest the addition of the words 'but the proxy should, so far as possible, consult the "nearest relative" '.
Proposal 17. We believe that this should encompass all forms of assisted feeding.
Part V
We consider that the power of an attorney must always be limited by the best interests of the patient, as well as by obvious ethical and legal constraints, and in particular we do not accept the right of one person deliberately to end the life of another, particularly on the basis of conjecture as to what the patient might have wanted.
Proposal 14. Again, we consider that this should encompass all forms of assisted feeding.
5.7 We strongly believe that refusal of life saving treatment and consent to involvement in medical research should not be within the attorney's power unless specifically granted.
5.15 We consider it inappropriate for anyone who has a criminal record or who has a known record of detention under the provisions of the Mental Health Act to be allowed to act as a medical treatment attorney. We are concerned that no one with a prospect of financial gain should be allowed to act, but realise that this may be impossible without excluding the close relatives who might often be chosen by the donor and who, for this reason, we would not wish to exclude.
5.16 As already expressed we are opposed to the substituted judgment principle, and prefer that of best interests.
5.17 We believe that a medical treatment attorney should make his decisions on medical grounds, uninfluenced by financial considersations.
Part VI
As we expressed in our reply to Consultation Paper No 119 (Part I, our paragraph 2) we consider abortion always to be wrong, and we are equally opposed to non-therapeutic sterilisation.
We strongly support proposal 2. Sterilisation operations, for the purpose of contraception or menstrual management, should be included in the special category.
6.10 We strongly urge that abortion, involving as it does two people (mother and foetus) should be included in the special category. The conditions of the 1967 Act which, as is recognised, effectively allow abortion on demand, are certainly not calculated to establish whether the operation is in the best interests of a patient who is unable to make her own decision, but are more likely to address the convenience of those who are looking after her. The best interests of the foetus are completely excluded in the conditions.
6.11, 6.12 One difficulty with withholding or withdrawal of artificial feeding is to be sure at what stage it can be reliably established that there is no hope of improvement (see reference at 6.25). There is a strong body of medical opinion which disagrees with the BMA that feeding/gastrostomy tubes are medical treatment (see our comments at 3.26). We would respectfully point out that the BMA Ethics committee paper (your ref 34) was a discussion paper, and not a definitive statement. In consequence we would certainly support 4. The withdrawal of nutrition or hydration necessary for continuation of the patient's life should be included in the special category, but would propose the insertion of the words 'whether administered by natural, assisted or artificial means' after 'patient's life' and before 'should'.
6.14 As we stated in our reply to Consultation Paper 119 (CMQ May 1992, p17), we do not believe that any non-therapeutic research should ever be permitted on an incapable adult.
6.22 Notwithstanding our objection to any form of abortion we consider that the rights of any foetus should be taken into account when making decisions about abortion.
6.25 Additional criteria should include a delay of at least one year, together with a declaration by two qualified medical practitioners that there is no realistic prospect of further improvement in this case. (See Andrews,K. Recovery of patients after four months or more in the persistent vegetative state. British Medical Journal 1993; 306: 1597)
6.26 Provided treatment, even of an experimental nature, is anticipated to provide a benefit to the individual concerned, we have no objection to its use. This is therapeutic research.
6.29/6.30 As with the Scottish Law Commission's proposal 26 (CMQ May 1992, p31), although we object to any non-therapeutic research on an incapable subject, if such research is going to be permitted we would accept the guidelines at 5 as providing effective control, subject to the following comments;
an insubstantial risk (b) would be one which was no greater than that entailed in routine medical investigations, such as taking blood samples or straight X-rays.
it is not clear to whom the explanation (e) must be given
6.34 and proposal 7. Although we read that this refers to a properly constituted local ethics committee, we feel that the proposal on page 114 is, as it stands, too vague.
July 1993
Signed by:-
President of the Catholic Union of Great Britain
Master of the Guild of Catholic Doctors
Chairman of the Joint Ethico-Medical Committee