Joint Ethico-Medical Committee

The Catholic Union of Great Britain
and the
Guild of Catholic Doctors


Response to the Lord Chancellor's Department
Consultation Document
 Who Decides?  Making Decisions on Behalf of Mentally Incapacitated Adults


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. The Joint Ethico-Medical Committee is composed of members of both organisations.



The green Paper "Who Decides?", (hereafter W.D.) aims to clarify and improve the law concerning decision making for incompetent adults. Thank you for allowing us the opportunity to contribute to the consideration of this important document. We would like to express our appreciation of the clarity and lucidity with which it has been written. It includes many detailed proposals concerning jurisdiction in financial and health decisions.



We accept the principle that incompetent adults should make their own decisions to the fullest extent possible. Interventions should be confined as much as possible, to achieving what the person wants for themself. Safeguards against physical, sexual or psychological abuse are absolute requirements. The need to clarify the position of those with a duty of cares welcome.


Major Concerns

Our major concerns are the following:

The definition of euthanasia used in the document is seriously defective in that it fails to recognise euthanasia by omission (see below re 1.8). We endorse the view of the House of Lords Select Committee and the Government that there should be no move towards the legalisation of euthanasia.

With regard to the definition of incapacity we accept the definition in the Law Commission draft bill, but are unhappy that failure to communicate (which is taken as equivalent to incapacity) may result from the inadequacy of efforts made by the bystander to achieve it. Furthermore there seems no reliable way in which fluctuations in capacity can be allowed for. (see below at 3.3 - 3.15)

The view taken of best interests in W.D. makes them little more than the (presumed) wishes of the patient. This is inadequate and runs contrary to the centuries-old understanding of them in medical and christian practice, where they are understood, at the least, to include the preservation of life, the prevention of disability and the alleviation of pain and distress. (see below at 3.22 - 3.25)

We have very serious concerns over advance directives (see at 4.1 - 4.34), which we divide into two groups, the 'specific continuing' and the 'general conditional.' It would seem that the former are already effectively recognised in English Law but the latter are so dangerous, for reasons we outline, that they should never be made legally binding. We strongly support the view that there should be a dialogue between patients and doctors on treatment choices. Indeed we consider this to be part of a 'covenant' between the doctor and the patient which should support the relationship of trust between them.

We consider the understanding of 'basic care' in the Law Commission document to be inadequate. (see at 4.35). We do not accept that it could ever be right to withdraw treatment with the intention of causing death. (see at 5.24 sq).

We consider that the powers of attorneys or managers should be strictly limited to giving consent to treatment and management in the best interests (as understood in our definition) of the patient. It should not include any right to consent to the withdrawal of artificial nutrition and hydration, or to non-therapeutic research, nor to refuse any treatment which is medically indicated. (see at 6.17 - 6.27)

The Impact of Legislation on Children

The proposals in W.D. apply exclusively to incompetent adults. They are bound to have an effect on the law relating to children, however, who comprise the largest single group of incompetent persons in society. Nowhere in W.D. is there any acknowledgement of this. Currently, parents make proxy health care decisions that are in the child's best interests. The Courts may intervene if there is any dispute. This in fact is very uncommon. The growth of a substantial number of health care decisions made by managers appointed by the Courts and government departments would undermine the present position which is both natural and generally acceptable.

We will now address the document 'Who Decides?' in the order in which it is presented:

1. Introduction

The terminology in this sphere is rather muddled, but we note your definitions (Glossary, Annex C) of advance statements, directives and refusals and would point out that the last two of these differ from the first in that they are meant to be binding and may properly be considered 'Living Wills'.

1.7 We do not accept that the position of advance refusals is as clear in law as you claim, but will return to this later.

1.8 Euthanasia. We welcome the government's decision that there should be no move towards the legalisation of euthanasia.

However, we do not accept that the link between advance statements and euthanasia is due to a misconception. On the contrary, the idea of advance directives was first brought up in America in the l960s by the euthanasia lobby with precisely this aim in mind. Furthermore we consider that your definition of euthanasia is incomplete in that it speaks only of 'a deliberate intervention' whereas death can also be brought about by a deliberate omission. We define euthanasia as an act or omission which of itself and by intent causes death for merciful reasons.' {SCDF Instruction on euthanasia 1988}.

The distinction between advance statements and euthanasia is, therefore, by no means so clear as you claim. Any generalised advance refusal of all treatment is effectively a request for death and is, even if not to be implemented by a positive act on anyone's part, a request for euthanasia.

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 basic life-sustaining measures, with the aim of ending the patient's life, is euthanasia. We therefore disagree with the Law Lords in the case of Tony Bland, (Airedale NHS Hospital Trust v Bland (1993, 2 WLR 361) and consider that their decision on the withdrawal of food and fluids effectively sanctioned euthanasia. {Adopted from JMCScOf1 p5 and JMCLC229, p2}

Q2. Should a common GB-wide approach be given to the health matters covered by the Law Commission and the Scottish Law Commission? We have no strong views, but on the whole favour separate approaches.

Q3. Should the provisions recommended by the Law Commission apply only to those aged 16 and over? We accept the law commission's proposal that advance refusals should be permitted only to those over 18.


2. Background

2.5 We agree that a patient cannot demand any particular form of treatment, but we believe he/she is entitled to receive any treatment which is clinically indicated.

2.6 We strongly endorse the Government's rejection of the view that the individual's right to determine...extends to any action deliberately taken to end the patient's life, but would add 'or any omission deliberately made' after 'taken'.

Q4. Do respondents have any concerns regarding the Law Commission's recommendations in so far as the ECHR is concerned? No.

2.19 We have noted the BMA Code of Practice, but consider the various distinctions it makes concerning advance statements and refusals are, from an ethical point of view, very muddled.

2.20 We would emphasise the limited circumstances and strict conditions under which the Council of Europe Convention on Human Rights and Biomedicine allows those without capacity to consent to be involved in tissue donation and to participate in research.

3. The Key Principles

The Test of Capacity

3.3 - 3.15 and

Q5a. Is the proposed definition of incapacity appropriate, and likely to be of use to practitioners?

Q5b. If so, how do practitioners see this working in practice?

We accept the definition of incapacity in the Law Commission Draft Bill on Mental Incapacity at 2 (in 'Mental Incapacity' Law Commission (No 231) 1995) though {JMC231LC.doc} it is difficult to see how this could work satisfactorily in practice. How is it to allow for fluctuation in or degrees of capacity? One of the foreseeable difficulties is that (at draft bill 2.-(5)) 'inability to communicate' will be easy to allege and much harder to disprove. This clearly depends on the effort made 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.

3.16 A code of practice could be helpful.

Q6. How, in practice, should "all practicable steps" be defined?

Q7. When would it be reasonable to conclude that such steps had been taken?

The taking of all practicable steps must depend on the enthusiasm and/or responsibility of the individual concerned, and we do not see how it could be defined unless by a requirement to involve more than one person, independently, in the assessment. We think the phrase 'broad terms and simple language' (Draft Bill 2.-(3)) is too imprecise. It could not obviate implicit pressure from doctors, nurses, relatives or carers, for the patient to decline otherwise appropriate treatment. In spite of 3.20 (Draft Bill 2.-(4)) the best test of comprehension in practice is to observe a rational decision as outcome - ie. one that might be arrived at by a person of ordinary prudence. It is one thing to accept an apparently irrational decision in one who is otherwise normal, and another to ignore it as a diagnostic pointer in one whose mental capacity is in doubt.

Q8. How best can consistency be ensured in the determining of inability to make a decision? and

Q9. Do the Law Commission's definitions of inability to make a decision offer sufficient guidance for medical practitioners?

We doubt whether the Law Commission's proposals are much help in practice and find it hard to see how any consistency could be achieved.


Best Interests

3.22 We endorse the idea that decisions made on behalf of those without capacity should be made in their best interests.

Q10. Is the best interests approach the most appropriate for making decisions on behalf of mentally incapacitated adults?

Only if best interests are correctly understood.


However, we find the proposed list of factors to be considered in connection with best interests (3.23) to be seriously defective, consisting as it does of little more than an attempt to assess the personal feelings of the incapacitated patient. We consider that the three most important clinical best interests for any human being are the preservation of life, the prevention of disability and the alleviation of pain and distress. In addition the patient will want to take into account spiritual, psychological, and moral factors and we would emphasise the importance of external factors such as the laws of nature, the existence of God and the sanctity of life in establishing both the best interests of society and those of the individual. {JMCScOf1} We do not think that an attempt to assess 'best interests' (3.24) by way of guessing the whims and fancies of the individual could be expected to work. It would certainly seem to us necessary to take into account religious and cultural factors in seeking to establish what parameters an individual would use in establishing, for themselves, their best interests.


Q11. Is the proposed guidance for deciding what is in a person's best interests appropriate?

In particular:

i. how should the decision-maker deal with differences of opinion between those who are to be consulted?

ii. will the medical profession be subject to accusations of negligence if they fail to make proper enquiries to identify or locate all interested parties?

iii. can we always expect relatives and carers to put the interests of the person without capacity entirely before their own, especially if their own welfare or that of another relative or close friend is at stake?

iv. should the guidance take into account religious or cultural factors in establishing a person's best interests? If so how could this be done?

We do not find the proposed guidance to be adequate.

The decision maker (by whom we presume you mean, in most cases, the doctor) must, in the end, make up his own mind, taking into account all the factors and opinions which may be offered. The medical profession may well be subject to accusations of negligence, but the best interests of the subject do not depend on the best interests of others, and such 'interested parties' can only offer an opinion as to what the subject might have chosen for themselves, which is but a minor part of the assessment of best interests. There is a serious danger that relatives and carers may want to put their own interests first, and the decision maker must be aware of this and discount it. We would not regard it as appropriate for a relative or carer, or even a proxy or attorney, to have an overriding say in defining best interests. Religious and cultural factors 'colour' one's view of life and are therefore extremely important in understanding how a person would interpret for themselves their 'best interests'.


General Authority to act reasonably

Q12. Is the Law Commission definition of the general authority satisfactory? If not, how should it be amended? We believe it is satisfactory.

Q13a. Are additional safeguards required to ensure the "necessaries" rule does not lead to abuses?

Q13b. If so, what additional safeguards might be incorporated?

We can only suggest that the carer or person acting should have to maintain proper accounts, with receipts for all disbursements, but we realise that this might be difficult for some and it is not clear to whom they would be ultimately accountable.

Q14. How would a release of payments scheme work in practice? In particular:

i. will sufficient institutions and individuals be willing to participate in the scheme to make it workable?

ii. will there need to be an obligation on companies to check that the information provided is valid?

iii. will doctors fully understand the financial implications of the medical certificate they are preparing?

iv. will there be a need for appropriate witnessing or authorising of the medical certificate to prevent fraud?

v. is the proposed limit of �2000 per year realistic and practical? If not, what should be the limit?

Doctors will, of course, be aware of the significance of the medical certificate only if they are appropriately informed. It is not clear what sort of witnessing or authorisation is in mind, but there is no necessity for a doctor's signature to be witnessed in order to establish its validity. An appropriately worded form might include a statement by the doctor that he/she had recently (within, say, 2 weeks) examined the patient in order to form his opinion. However, if witnessing or authorisation were required the whole process would become more time consuming and costly.

Q15. Should direct payments to third parties be restricted to "necessaries" only? Probably yes.

Q16. ...

i. is it desirable to have a common scheme for Scotland and England and Wales? For this purpose we think it is. {see Q2}

ii. we like the idea of a public guardian.

Q17. Should the interests of a child continue to take precedence over those of the person without capacity in relation to a child's property?

Insofar as it is already the child's property the answer is yes. Where the incapable adult also has an interest in the property there is no reason to see why this principle should be universally applicable in all circumstances.


Q18. What type of guidance might be helpful to carers?

General guidance, particularly of a positive kind, concerning carers' duties and rights could be useful. This would presumably have to be in writing, perhaps in the form of a short leaflet, and made available through DSS and local Social Work departments.


4. Advance Statements about Health Care

Medical treatment may be declined for good reasons. There is no duty to accept treatment that is futile (ie. cannot achieve its therapeutic purpose) or excessively burdensome in its consequences. These consequences may be physical, psychological, social or economic. Consideration of the futility or burdensomeness focuses on the value or bearability of the treatment. Refusals based on these considerations are to be distinguished from generalised refusals of treatment which view one's own life, either now or in the future, as 'futile' or 'unbearable'. Refusals of the latter type, which seek primarily to put an end to one's life are, in effect, suicidal.

4.4 We accept that a refusal of a particular, clearly specified, treatment or procedure by a fully informed person of sound mind will "survive any supervening incapacity" but it is not true that the status of advance directives (or refusals) have been tested at law. What appears, for the most part, to have elicited judicial approval in the cases cited has been 'once and for all' or 'now and forever' refusals of clearly specified procedures (eg blood transfusion or amputation of a limb) made by people who were capable at the time. We accept that such a total and continuing refusal of a treatment, whether the refusal is morally right or wrong in itself, must be respected. (re T [1992] 4 AllER 649 their p 23, and re C [1994] 1 WLR 290 their p 28)

The important distinction to be made is between such clear cut decisions and those being proposed in some circles which seek to refuse all, or a wide range of, treaments or procedures in the event of the occurrence of certain posible circumstances at some time in the future. Such a choice cannot be truly 'fully informed' because of the impossibility of foreseeing all the possible circumstances and the changes in medical management which may take place before they come into operation. From an ethical point of view this is not the refusal of a treatment as being unacceptable in itself but in effect a request for life to be ended in certain situations. (and see below Qq 19,20)

4.5 It follows that we consider that such generalised and conditional advance refusals would be requests for euthanasia (by omission, otherwise sometimes called 'passive euthanasia').

4.6 We agree with the House of Lords Select Committee that "it could well be impossible to give advance statements in general greater legal force without depriving patients of the benefit of the doctor's professional expertise and of new treatments and procedures which have become available since the directive was signed". Once an advance directive is written and comes into effect it overrides any residual autonomy which the patient may have retained. We do not agree with the BMA Code of Practice on advance statements which totally fails to distinguish between the two types of refusal, namely the 'specific continuing' and the 'generalised conditional' types outlined above and below.

Q19. Should the Government legislate in the area of advance statements?

Q20. What should be the objective of legislation on advance statements?

No, we do not consider that the Government should legislate in this field.

With regard to advance refusals we distinguish, as above, 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 there is a general acceptance of Jehovah's Witnesses' refusal of blood transfusions.

A general refusal of treatment(s), or a demand for their withdrawal, particularly simple non-burdensome 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 nor in the public interest for a person deliberately to end their own life. It is, and should rightly remain, also illegal to aid and abet a suicide.

If you are correct (as at 4.4) that the specific advance refusals are already to be respected at law, there is no need for legislation to confirm them, and we consider that the dangers of the general/conditional type are so serious that they should never be more than indicative.

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 with resulting avoidable deterioration in the condition of a patient who survives, (5) the exclusion of new methods of treatment, (6) problems of conscience for and (7) the demoralisation of, doctors, nurses and other members of the health care team by rigid legal imposition of written requirements which are clearly clinically wrong and which (with the patient now incompetent) no-one can rescind.

It is our opinion that advance statements, except where strictly specific, may be advisory but not mandatory. 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.

We note that the Medical Defence Union (Consent to Treatment, 1996) say "They (doctors) should also consider the possibility that the patient may have changed his mind since signing the directive and take any evidence of this into account." (p 10)

4.11 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.

Advance Refusals of Treatment

4.14 We agree with 4.14 but we would emphasise that it would be ethically wrong to expect a doctor to end a patient's life by omitting treatment which he conscientiously considers, in his professional judgment, to be appropriate and indicated (see also at 2.5). We endorse 4.15 so long as it also covers this. We note 4.16 and 4.17 and that 'best interests' can sometimes override an advance directive. We consider they ought always to do so. It has to be said, however, that the burden on the doctor (at 4.17) in assessing the legal situation might pose such insuperable difficulties of interpretation as to lead to 'giving up' and taking the easy way out.

Q21. Would the safeguards be sufficient to ensure that advance statements did not unintentionally prevent the use of medical procedures developed since the drafting of the statement? No - we do not think this could be completely avoided.

Q22. Is this an appropriate definition of an advance refusal? We note the Law Commission definition and would feel that the words 'immediately and' should be inserted after 'to have effect' since this would apply to the specific continuing 'now and forever' refusals which we consider the only acceptable type.

Q23. How best could safeguards be put in place to ensure advance statements are the result of a choice that is informed, considered, and free from undue influence?

We do not see how this could be guaranteed, and as we have said at Q7 believe that patients would often be likely to feel under some sort of pressure from doctors nurses, relatives and carers.

Q24. Should advance refusals apply in all cases? We consider it unacceptable that advance refusals should be allowed to refuse ordinary means of treatment as well, of course, as basic care (see below). We do not consider that ordinary treatments should be refused or withheld where the patient is not dying. The question of PVS raises a number of problems of diagnosis and management, not least about methods of feeding, but whilst a person in that state might properly refuse futile or burdensome treatment your phrase 'would not wish to be kept alive in a persistent vegetative state' implies that they might seek to have their life brought to an end other than by the natural course of events.

Q25. If in general advance statements overrule the decision-making of someone granted general authority, in what circumstances (if any) should there be an exception to this rule? We consider that the best interests of the patient should overrule any generalised (conditional) advance statement. This would allow doctors, nurses or anyone with general authority to take into account any recent developments in medical treatment. If this were not to be the case there is a serious risk that the patient would survive the incident but in a much worse state of handicap than need have been the case.

Q26. Should an advance refusal only apply when the life of the patient is in danger if the refusal has specifically acknowledged the risk of death? This would be a wise precaution, but no refusal should be made without adequate counselling and an explanation of the risks involved.

Q27a. Should a woman need to refer specifically to pregnancy in order for an advance refusal to apply during pregnancy?

Q27b. Should advance refusals concerning treatment in childbirth only apply when the life of the patient is in danger if the refusal has specifically acknowledged the risk of death?

We do not consider that the mother should have the right to refuse any treatment during pregnancy if so doing might put the life of the foetus at risk.

Q28. Would these recommendations [of the Law Commission concerning liability] provide an apppropriate balance between protecting health care providers, and protecting patients? We believe they would.

Q29. In what form or forms should an advance statement be recorded in order to be valid? We see no need to specify a particular form for an advance statement, though we consider that only those which specifically refuse a particular treatment or procedure should have any legal force.

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.

4.33 Ongoing dialogue is much to be preferred, whenever possible, to inflexible legal documents.


Q30. Should an advance refusal be able to refuse "basic care"? No.

Q31. How should basic care be defined?

Q32. Should a person who has made an appropriate advance refusal be administered direct oral nutrition and hydration against their objections (force fed)?

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.

4.35 We are concerned that the requirements in the Law Commission draft Bill (at 9-(7) & (8)) to disallow refusal of basic care, defines it merely as 'to maintain bodily cleanliness and to alleviate severe pain and the provision of direct oral nutrition and hydration', which falls 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. {JMCScOf1 p3}

(4.37) We find it hard to understand the reference to oral force feeding which is a technical impossibility. Feeding by naso-gastric or gastrostomy tube, which involve initial procedures which would ordinarily require consent, is likely to have been started in an emergency situation in the expectation of recovery. Once such a tube is in place the administration of food and fluid is a simple nursing procedure and should be continued unless or until the route of administration fails and needs to be reinstated.

(4.36) 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. The argument justifying 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.

We believe that where a doctor cannot, for conscientious reasons, accept an advance directive (refusal) the patient (or those who act on his/her behalf) should be advised of their right to seek another doctor. Problems of conscience are most likely to arise over questions of food and fluid.


Resort to the Courts

4.38 We accept the Law Commission's guidance here.

However, even if an advance directive has been properly signed and witnessed we believe there needs to be a legal mechanism to establish, in cases of doubt, whether or 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. We are also seriously concerned that, in spite of an initial 'presumption of competence', lawyers apparently find it easier to decide that an advance directive is in operation than to allow its withdrawal if there is any sign of recovery ('presumption of continuance').

Q33. Would the courts be the most appropriate forum for deciding on the validity or applicability of an advance statement? Yes.

Q34. Should there be a specific offence of concealing or destroying a written advance refusal of treatment with intent to deceive? We have no strong views on this.


5. Independent Supervision of Medical and Research Procedures

Q35. Should an attorney be able to consent to medical procedures which would otherwise require the approval of the court? We understand the doubts of the Government and our own experience makes us quite decided that no attorney should be able to consent to medical treatment which would otherwise require the approval of the court.

Q36. Should an attorney ever be able to refuse treatment? No, for the same reasons.

Q37a. Should the court be asked to rule on all proposed sterilisations for contraceptive purposes? Yes.

Q37b. Should the court be asked to rule on all proposed sterilisations to relieve the existing detrimental effects of menstruation? (and 5.18) Yes. We do not consider that the certificate from an independent medical practitioner would be 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. {JMC231LC}

Q37c. Should the court be asked to rule on all treatment for diseases where the treatment will, or is reasonably likely to, render the person permanently infertile? No.

Q38. Should the donation of any organs be excluded from this general rule? (5.11 - that any treatment or procedure to facilitate donation of non-regenerative tissue or bone marrow should require court authorisation). No, the court must decide.

Q39a. Should it ever be necessary to consider an incapacitated person as a donor of regenerative tissue? We consider that this should almost never be necessary, but it is possible that a situation could arise where someone on whom the incapable person was dependent might need such tissue and the consequent survival of this person could be in the incapable person's best interests. {See JMCNufB4 ?}

Q39b. If so, should there be safeguards similar to those which exist for non-regenerative tissue or bone marrow? Yes.


Treatments requiring a second doctor's certificate

5.19 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. The second signatory under the current 'green [now blue] form' procedure does not have to have seen the patient. 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 regret that the interests and rights of the unborn receive no recognition.

Q40. Do the proposals for a second medical opinion provide a sufficient safeguard in relation to:

i. sterilisation to relieve the existing detrimental effects of menstruation; No (see 37b)

ii. abortion; No (see 5.19) or

iii. Medical treatment for mental disorder? No.


Departing from the Best Interests Criteria

5.24 We agree with the Law Commission that the problem arises over the withdrawal of treatment rather than in commencing it, and we disagree with the House of Lords Select Committee who thought there was no difference between discontinuing a treatment and not starting one. We consider that life, itself, is a best interest which cannot be ignored.

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), nor that food and fluid was 'against his/her best interests'.

As explained above (top of section 4) we consider that a treatment can be discontinued or withheld if it is in itself burdensome to the patient, whether or not it is also futile. Equally, there is no requirement to give or receive a treatment which will be 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. {both paras from JMCSCOf1}

5.25 It is regrettable that the definition (see Q 43) makes no reference to the use of recognised criteria for the diagnosis of PVS or irrecoverability, in particular the length of time needed to achieve any reliability in such cases.

Our understanding of persistent vegetative state is gradually changing and this needs to be properly reflected by the evidence being given in open court. For example, there is now scientific evidence that those in PVS can experience thirst or have other 'islands of consciousness' elicited by 'provocative testing'. Misdiagnoses have been not infrequent and there have been several cases, diagnosed as PVS, who have subsequently been reported to have recovered.

Q42. Should the discontinuation of artificial nutrition and hydration be lawful for defined patients if certain criteria are met? No. 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. In such a situation we consider assisted feeding to be part of basic care.

Q43. Is "patients who have no prospect of recovery who are either unconscious or in a permanent vegetative state" a suitable definition? No, we consider this inadequate without reference to appropriate diagnostic requirements. (see 5.25)

5.26 We do not consider that a conditional advance refusal, which involves refusal of ordinary care, could ethically be made, nor that such a refusal should be countenanced at law. We have commented on the fear of 'force feeding' above at 4.37.

5.27 We are strongly opposed to any suggestion that such a serious step could ever be taken under a 'second opinion' procedure, or that (5.28) an attorney should be allowed to authorise it.

Q44a. Should the court retain the exclusive right to make decisions on the withdrawal of artificial nutrition or hydration; Yes or;

Q44b. Should a person acting under a power of attorney be able to take such decisions? No or

Q44c. Could these decisions appropriately be made by the second opinion procedure? No

We also consider that all such decisions should be made by court in open session (see 9.29, 9.30).

Q45 If either of the alternatives to the court retaining exclusive rights is considered appropriate, are any additional safeguards necessary in order to protect the patient? We do not consider any alternative to be appropriate.

Q46. In considering the continuance or withdrawal from PVS patients of artificial nutrition and hydration, should regard be given to the best interests guidance? Yes. We have commented on this at 5.24.

Q47. Are there any circumstances in which it is ethical and reasonable to apply to patients unable to give consent medical procedures of benefit to others?

We are doubtful if there are any such circumstances. Benefit to others is not an adequate reason for medical procedures to be applied to persons not able to give consent.

5.33 We are opposed to the inclusion of those unable to consent in genetic screening and consider that informed consent is a sine qua non of any screening, and especially of any research, because the possible ramifications in society may be widespread. It is possible that in a family situation the consent of the incapable person might be 'presumed', though equally there could be a clash of interests, or a possibility, even if remote, of some benefit to themselves which might justify their inclusion. (and see below at 5.35-5.39).

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 in the Draft Bill (LC 231, at 10.-(4)) would appear to allow the possibility of live donor organ transplants without the consent of the donor. {JMC231LC p5}


Research Procedures not intended to benefit the participant.

5.35 - 5.39. We prefer the views expressed in the Council of Europe Convention on Human Rights and Biomedicine to those of the Law Commission. We are concerned that non-therapuetic research could open the door to abuse.

5.37 The phrase 'the risks which may be incurred by that person are not disproportionate to the potential benefits of that research' is taken from Section 16 of the Convention referring to all forms of research. In the present context, where there are no expected benefits for the participant, this phrase appears meaningless.

The quotation (5.38 - from Section 17) 'the research entails only minimal risk and minimal burden for the individual concerned' might seem to allow some such studies, but you have omitted a phrase which occurs in our version (at 17.1.ii) 'the results of the research have the potential to produce direct benefit to his or her health.'

Q48. Should research procedures not intended to benefit the patient be allowed?


Q49. Are the safeguards proposed by the Council of Europe adequate to ensure that any scheme would not be open to abuse? and

Q50. What, if any, additional safeguards would be required?

In consequence of what we have said above we would expect research to be limited to those who (i) are actually suffering from the condition in question and (ii) may expect some potential benefit from the research, however remote.


Mental Incapacity Research Committee

5.42 We like the recommendation that there should be a separate individualised and independent check on whether an individual should be brought into a research project, but we do not see how a Mental Incapacity Research Committee would assist in achieving this.

What benefits would a Mental Incapacity Research Committee provide over and above that provided by Local and Multi-Centre Research Ethics Committee? None.


6. Continuing Powers of Attorney

Q52. Should the Government legislate to create a power of attorney so that the attorney is able to make decisions on health care and personal welfare matters? Our answer to this will depend on the powers the attorney is to be given. If the attorney is only able to give consent to treatments and management in the best interests of the patient (donor) this would be acceptable, but we would not accept a situation whereby they could make unfettered and unaccountable life and death decisions.

6.17 Specifically we do not consider an attorney should have the powers listed here, namely to consent to the discontinuation of artificial nutrition and hydration, procedures for the benefit of others and non-therapeutic research. We endorse the proposals for limiting the attorney's powers under 6.19 - 6.21, and 6.23.

6.24, 6.25. In our view the best interests of the patient must override any delegated power which the attorney may have been given. In particular we do not think they should have the power to refuse any treatment which is medically indicated.

6.26 We do not agree that a court should be able to delegate powers of refusing artificial nutrition and hydration, procedures for the benefit of others or non-therapeutic research to an attorney.

Q53, 54 What safeguards would be needed to ensure that [these] such a recommendation[s] would work in practice? We do not believe that they [it] should, nor that any safeguards would be adequate to protect the donor.

6.27 We agree that 'best interests' should cover this.

Q55. Should a person between the ages of 16 and 18 be permitted to be a donor?

Q56. Would such a recommendation be workable in practice? (That the donee might be an office holder).

Q57. What provision should be made for people who have reading difficulties or whose first language is not English?

We have no strong views on these three issues.


Q58. Should a CPA be able to grant general authority, or should specific matters be listed on the form?

For the most part we see no need for specific matters to be listed except in relation to health care and medical matters. Powers in these fields should, we suggest, be clearly specified, and limited as we have said above.


Q59. Should there be a system for certification of CPAs by a solicitor and/or a medical practioner?

We think this would not be necessary.



We have no expertise in these matters but think the Public Trust Office sounds an appropriate body. For its functions to be merely administrative seems inadequate.


7. Decision-Making by the Court

A Unified Jurisdiction

Q69 Should there be a single court jurisdiction, able to deal with all areas of decision-making (financial, welfare, and health care)?

Q70. Does the current Court of Protection offer the most appropriate base for such a jurisdiction?

We support both these proposals.

Role of the Court

Q72a. Should any decision making forum have the power to declare:

i. whether or not a person has capacity; or

ii. whether or not an advance statement is valid; or

iii. whether or not authority (such as CPA) should be delegated?

Q72b. If so how should such a declaration cater for the needs of those with fluctuating conditions, such as manic depression, where the person concerned may have unpredictable periods of complete lucidity when substitute decision-making is not required?

We think the answer to 72a is yes, and to 72b is that orders should be time-limited, though the limit might be varied by the court according to the case, that the person should have ready recourse to the court if they regained capacity, and that each major decision should require a separate decision by the court.

Q73. Should the court be able to appoint a manager?

Q74. If so, what should be the scope of a manager's responsibility?

Q75. What criteria should be used to decide who should be a manager?

We accept that a court would be able to appoint a manager, but consider the scope should be limited to areas specified by the court in each particular case, with a corresponding limitation as to time (as in 7.14). We note in footnote 2 (to 7.12) (and at 7.48), and agree, that a manager's remit would be similar to but more restricted than that of an attorney, on whose powers we have already commented with respect to medical matters at Qq 44a,b, 52, & 6.17,24,25,& 26. In particular we do not accept that a manager should have power to make decisions on health care and personal welfare matters (see below Qq 76 - 80). It is also important that the patient should have ready recourse to the court if s/he regained capacity. We have no views on Q75.

Q76. Are there any circumstances in which the discretion of the court in these areas should be limited? The court should have no power to delegate life and death decisions to others (and see 7.18).

Personal Welfare

Q77. Should explicit provision be made for the court to make other orders in addition to residence and contact orders? We have no strong views on this.


Health Care

Q78. Should a court-appointed manager have the power to refuse consent to a particular form of treatment? No. This envisages a situation where the doctor has suggested or advised a particular treatment and the manager disagress. Only the court should decide.

7.27 We endorse the view that a manager should have no power to refuse basic care and have put forward our views on the limitations which should apply to advance refusals.

Q79. Should a manager be able to consent to non-therapeutic research procedures? No. We do not consider that a manager should have authority to decide in such matters. If managers were to make such decisions regarding medical research it would lay the Government open to the charge that it had breached the Helsinki Convention. This holds that "in research on man, the interests of the subject take precedence over the interests of science or society". This also conforms to the Catholic principle that all decisions should be centred on the person and their interests.

Q80. Is there a need for a new provision for compulsory admission to hospital? We see no need for a new procedure.


Managers appointed by the Court

7.45 We hold (Q79) that managers should not have power to consent to non-therapeutic procedures precisely because they are not in the patient's best interests, so a 'best interests check list' is meaningless. There is a danger that such decisions might be influenced by considerations of finance or the policies of government departments.

Q81. Is there a need for time limited appointments in the majority of cases or [do] the disadvantages of this in terms of expense and possible incovenience outweigh any likely advantages?

In the majority of cases probably not, but the position of the minority with fluctuating capacity must be allowed for. Perhaps appointments could be for 5 years in the first instance and then made permanent at review if there has been no sign of change in the patient's condition.

QQ 82-86. We have no expertise in these matters.


Management of Residents Funds by Care Establishments.

Q87a. Should there be a general assumption that care home managers should not be appointed as managers of an incapable adult's financial affairs? Yes.

Q87b. Are there circumstances in which, despite the conflict of interest, a care home manager might be the most suitable person? This cannot be completely excluded.

Q88. If care home managers are to be allowed to carry out this role, what approval and monitoring systems should there be? We would accept those suggested in 7.65.


8. Public Law Protection for People at Risk

Q90. Is the proposed definition of harm appropriate? Yes.

Apart from this we have no specific comments on this section.


9. The Judicial Forum

Q103. How could any new forum ensure the best use of appropriate ethical and medical advice? We are not sure how this could best be achieved in practice, but are concerned lest a limited panel of regular advisers, proferring routine advice, might become the norm.

Privacy of proceedings

We agree with the President of the Family Division in the case re G quoted (9.29), that there is a legitimate interest in issues raised in applications for declarations that the withdrawal of treatment may be lawful, and that such cases should be heard in open court. We deplore the order which was made in the case re C quoted (9.30) preventing proper consideration of the case outside the court. We recognise that there may be cases where anonymity has to be maintained , but these should be the exception. Generally, where the decisions are effectively matters of life and death, the process is clearly of such importance that it must be open to the public.



We believe that W.D. goes beyond what is necessary in seeking to tidy up various aspects of the law concerning mentally incapacitated adults, particularly in the field of health care. In particular where it seeks to enhance patient autonomy (by advance refusals) it actually undermines it, since the written word or the power of another (attorney or manager) will supervene over any residual autonomy of the patient.

The proposals on health decisions concern some of the most sensitive and personal areas of all decision making. There has been insufficient consideration and public debate at the present time for legislation in these areas.

We conclude that, where health is concerned, it would be better to continue with the present law and good practice guidelines than to proceed too quickly to flawed legislation.


March 1998

Signed by:-
President of the Catholic Union of Great Britain

Master of the Guild of Catholic Doctors

Chairman of the Joint Ethico-Medical Committee