Published: 1st March 1998
Christian Medical Fellowship is interdenominational and has as members more than 4,500 British doctors and 1,000 British medical students who are Christians and who desire their professional and personal lives to be governed by the Christian faith as revealed in the Bible. We have members in all branches of the profession, and through the International Christian Medical and Dental Association are linked with like-minded colleagues in over 60 other countries.
We regularly make submissions on ethical matters to Governmental and other bodies and indeed commented on the Law Commission Consultation Papers which led to their 1995 Report Mental Incapacity. We are grateful for the opportunity to comment on the medical issues involved in the Lord Chancellor's Consultation Paper Who Decides? and would be willing to help further if requested.
The following concepts in our Affirmation on Christian Ethics in Medical Practice are relevant to this Submission:
We hold the Bible to be the revealed Word of God and find this helpful in giving us principles such as the above to guide decision-making in the ever more complex areas of ethics and practice.
We recognise though that these principles only guide and that for the reasons clearly set out in the Consultation Paper's Introduction, the problems associated with the care of adults with mental incapacity are difficult ones.
Overall, we wish to commend the Lord Chancellor's Department (hereafter LCD) for seeking such high standards of respect and care for these adults, whom we agree 'are some of the most vulnerable people in our society'. It is a pity that parts of the medical sections are inevitably controversial, and while we will occasionally need to express our views with some force, we would not wish this to detract from our general commendation.
Whilst also generally commending the language of the Consultation Paper, we are concerned as doctors that expressions which may appear logically and legally satisfactory do not necessarily translate well into clinical practice. As examples we would mention the expressions 'or for any other reason', and 'all practicable steps'. How in practice should professionals interpret these? (We note that the LCD often acknowledges this problem.)
We are only competent to comment at length on Chapters 4 and 5 on Advance Statements about Health Care and Independent Supervision of Medical and Research Procedures, via brief comments on The Key Principles, and to end with very brief comments on certain medical aspects in later chapters.
We agree in general with the discussion of capacity, best interests, and general authority to act reasonably. In principle these are consistent with the concepts mentioned above from CMF's Affirmation on Ethics, and we commend the LCD's desire to allow the mentally incapacitated to live as full lives as possible, making as many choices for themselves as possible, but then providing where necessary the fullest and most appropriate protection.
However, the interpretation of these concepts takes place against a changing cultural background where:
Death tends to be denied by the professions and the public.
There is a loss of trust between patients and professionals.
Arguably, society currently overvalues autonomy (rights) and undervalues responsibilities and restrictions. We would welcome any move, and some commentators have noted one, towards a return to communitarian values.
This cultural context is relevant to the critiques which now follow.
It should be clear from our Affirmation on Ethics that we want to involve our patients as much as possible in their own health care and therefore accept that advance statements can be of value in indicating patients' wishes. However, our answer to Q19. Should the Government legislate in the area of advance statements? is a firm 'No'. We hold this view because of objections of principle and because of practical problems.
The potential link with euthanasia
We entirely accept and welcome the Government's statements 'that there should be no move toward the legalisation of euthanasia' and agree that advance statements need not necessarily involve issues associated with intentional killing at all. However, many do. The fact that many of the advance statements being promoted do show suicidal ideation is clearly recognised by the LCD's attempts under the provisions for 'basic care' to prevent the enaction of this.
The message sent by giving advance statements inappropriate statute force would make it harder to prevent the eventual enshrinement of suicidal advance statements, for instance 'starve and dehydrate me to death' clauses. These would lead to changes in policy and practice, which would lead in effect to intentional killing without statutory permission.
It is not enough to trust that there would be legal safeguards in statute law to prevent this particular slippery slope, for society needs to take adequate account also of the effects on the climate of public opinion of changing law. When law is changed, three consequences follow:
What is the evidence for linking the 'advance statements' debate with euthanasia? As examples, we would cite the following:
The omission of any mention of food and fluids in this final quote is current proof that the VES wishes to see legally enshrined in advance statements 'starve and dehydrate me to death' options, from which they expect eventually to achieve acceptance of 'the lethal injection'.
Advance statements need not have anything to do with euthanasia, and statute force given to advance statements might well try hard in its wording to prevent the enshrinement of suicidal statements, but law is not passed or acted upon in a vacuum - changes of perceptions must be acknowledged, and the euthanasia lobby is not going to abandon its best hope of achieving a 'move toward the legalisation of euthanasia'. Given the other arguments below, CMF is convinced the Government must not legislate here.
The language of advance statements reinforces negative images of age, disability and disease and feeds patients' fears.
There are practical problems associated with our inability to know in advance what we will want when we become sick (see below), but an objection in principle to statutory force for advance statements is that it would further reinforce negative images of age, of ill health and of sick people, which are already all too prevalent in our society.
Advance statements indicate a breakdown of trust between doctors and patients.
Statute force would add to this 'vote of no confidence' and not encourage communication between the parties, either corporately or in individual clinical situations. The law should encourage the highest standard of communication between doctors and their patients, and legislating in this area would not help.
Issues of timing - when should advance statements be implemented? When should their application be discontinued?
The LCD acknowledges various difficulties about capacity not being an all-or-nothing question. There is a sliding scale. A patient can have capacity for one function but not another. Incapacity can be temporary or permanent. But where is the practical guidance in the proposed legislation? There would need to be a clearly identifiable 'trigger event'. Could all those responsible agree on this?
Issues of informed consent - how could people precisely foresee future situations?
While philosophers debate whether the person who has now become incapacitated is 'the same person' as the one who completed the advance statement, doctors and nurses caring for patients are all too aware of the difficulties patients have looking into the future. Attitudes are often dictated by experience of somebody else's suffering. This argues against inappropriate force for advance statements.
Changed minds - the healthy do not choose in the same way as the sick.
When patients with clear minds come face to face with the choice between death and a life of severe disability, most choose life. In a study of 21 patients with high tetraplegia, who survived because of temporary artificial respiration, only one said she wished she had been allowed to die. Two were undecided, but the remaining 18 said they would wish to be ventilated temporarily again should the need arise. In everyday practice, clinicians are aware that when we become unwell, our attitudes to what we want change. However, we might have completed an advance statement which we would no longer wish implemented, but cannot now 'change our minds' . . .
Difficulties of diagnosis and prognosis.
The title of a medical paper describes both these difficulties vividly: 'Patients with terminal cancer' who have neither terminal illness nor cancer. The health professions should not deceive themselves or their patients that they can always be sufficiently certain of diagnosis and prognosis to know whether following an advance statement to the letter is truly in the patient's 'best interests'. It has been said that 'medical prognosis is on a par with weather forecasting in Britain - frequently right, but often hopelessly wrong'.
Following advance statements too closely will often have adverse outcomes.
Consequent upon these uncertainties in diagnosis and prognosis, omissions of treatment (prevented by an advance statement with inappropriate force) may not lead to a 'merciful release' for the patient, but to a longer period of poor quality life with greater disability - arguably an adverse outcome for the patient, as well as for family and society in general. Geriatricians commonly face such complex situations with their patients and do not want to practise 'with one hand tied behind their back'.
The economic consequences of statute force for advance statements are unpredictable.
Even though some recent evidence from the USA suggests that patients with advance statements have shorter lengths of hospital stay and lower costs than patients without them, we believe the US culture of health care is so different that we cannot necessarily extrapolate such expectations to the UK. Indeed, we would predict many examples of the geriatric dilemmas hinted at in (5), which will have an economic cost as well as an ethical one.
But whatever the effect on the medical costs might be, we would expect there to be considerable legal costs in resolving disputes if advance statements were encouraged by statute force. We recognise that advance statements might offer health professionals some degree of protection against litigation for omitting treatments, but this is not a major problem in the UK. We predict that costs in time and money within the legal process would be greater if advance statements are given further force.
Advance statements may hinder communication rather than help it.
Where there is some possibility of communication with a patient, but it is difficult and requires effort, doctors may be tempted to rely on the document rather than try contemporaneous communication.
Risk of coerced or fraudulent advance statements.
Given that there might be significant financial or other benefits to relatives if an elderly person were to die because of having no active treatment because of an advance statement, we are not convinced that safeguards to prevent coerced or fraudulent statements could ever be sufficiently stringent.
Most patients do not want their advance statements followed too closely anyway!
In a 1992 North American study, 150 mentally competent patients receiving dialysis were asked how much leeway their doctors should have to over-ride their advance directive regarding continuation of dialysis should they develop Alzheimer's disease. 39% thought there should be 'no leeway', 30% 'a little to a lot of leeway', and 31% 'complete leeway'. As a large majority of patients recognises intuitively that it is in their best interests for their doctors to have some flexibility in implementing advance statements, why legislate?
The arguments listed above are not necessarily definitive arguments against advance statements, but we believe they are arguments against the Government legislating in this area. We are convinced that inappropriately binding advance statements will not work well in practice, and that however careful statute law was to prevent the enaction of suicidally worded advance statements, there remains a back door to euthanasia to be considered.
At the very least, we strongly endorse the statement (4.7) that
'the Government recognises there might be some merit in postponing further policy development in this area, until there has been more of an opportunity to consider the impact of case law and the Code of Practice'.
For the sake of completeness, and because of reassurance that comments on the details of the Law Commission's work will not be prejudicial to our fundamental objection to the Government legislating, we will now give brief answers to the questions in Chapter 4.
Q19. Should the Government legislate in the area of advance statements?
No - see above
Q20. What should be the objective of legislation on advance statements?
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?
Probably not, but the answer would surely depend on the details of the advance refusals? The very question illustrates the problem of giving inappropriate force to patient refusals.
Q22. Is this an appropriate definition of an advance refusal?
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 drew attention above to the danger of coerced or even fraudulent advance statements, and the question of the depth of understanding of the person completing the statement is also of great significance.
Ideally, completion of an advance statement would involve a lengthy period of discussion between the patient and a health professional with appropriate knowledge (probably a doctor), who preferably knows the patient well (probably their GP) and where there is mutual trust. But what are the resource implications of this? Who pays? The patient? - in which case some will not be able to afford the luxury. The State? When there will always be constraint upon health care resources, is this a priority? Who is liable in the event of later legal dispute? What would be the role of the defence societies?
Do the debatable benefits of advance statements justify these resource implications?
Q24. Should advance refusals apply to all cases?
The question is ambiguous. In theory, and for those who favour them, it would seem obvious that unless the advance statement applies to any situation specified, there is no point having one. However, in practice, the examples the LCD quotes indicate a genuine problem. We suggest therefore that overall the answer should be 'No'.
Q25. If general advance statements over-rule the decision-making of someone granted general authority, in what circumstances (if any) should there be an exception to this rule?
This is another good illustration of inevitable conflict. At the very least, nobody granted general authority and no health professional should be forced by a piece of paper of debatable current significance to act against their conscience, so we would see need for a legal mechanism to resolve conflict. There would be major resource implications here.
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?
Q27a. Should a woman need to refer specifically to pregnancy in order for an advance refusal to apply during pregnancy?
Yes. The health professional facing a pregnant woman is responsible for two patients - the woman and her unborn child. Consideration must always be given to the latter.
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?
Presumably it is 'the risk of death' of the mother that is referred to. But if the mother dies, so does her baby. Depending on gestation/viability, we would be greatly concerned if an incapacitated woman and her baby were both to die because of a piece of paper completed when the woman could not necessarily foresee the situation that had arisen. We would stress again that, ethically, there are two patients here who deserve protection, whatever the current legal status of the unborn child.
Q28. Would these recommendations provide an appropriate balance between protecting health care providers, and protecting patients?
Q29. In what form or forms should an advance statement be recorded in order to be valid?
As a minimum, something must always be in writing. We accept that the verbally expressed wishes of a dying patient as part of an ongoing dialogue during palliative care might constitute a valid advance statement, but they should be recorded in casenotes, ideally with a witness co-signing. The greater the 'distance' between the making of an advance statement and its likely implementation, the greater should be the degree of proof. We are not sure there could ever be adequate safeguards against misunderstanding and abuse.
Q30. Should an advance refusal be able to refuse 'basic care'?
Q31. How should 'basic care' be defined?
Apart from the ethical obligation to treat the patient with the care appropriate to all living human beings simply because they are human and alive, there are obligations to other patients, to attending health professionals and to family and voluntary carers.
Further to our extensive comments above about the problem of suicidal advance statements and euthanasia, we make the point again that some advance refusals do not set out to refuse treatment, which should be allowed, they set out to refuse life, which should not be allowed.
We agree that 'basic care' must include bodily cleanliness and alleviation of severe pain, and welcome the LCD's attempt to prevent suicidal advance refusals with the concept of 'direct oral nutrition and hydration'. We acknowledge that within our membership (and see our comments below on the withdrawal of tube feeding in cases of PVS) there would be a range of opinion about the appropriate delivery of food and fluids.
For some of us, 'direct oral nutrition and hydration' (which we take to mean by mouth, aid being limited to holding a feeding cup to the mouth) would suffice. Others would sometimes see tube feeding as an appropriate part of basic care.
'Direct oral nutrition and hydration' is the minimum which we would all agree must form part of 'basic care'.
Q32. Should a person who has made an appropriate advance refusal be administered direct oral nutrition and hydration against their objections (force fed)?
We believe the political 'hunger-strike' situation is different from the usual clinical one. The hunger-striker has made a clear previous ideological commitment to starving himself to death.
But further, we find the question confusing. As the advance refusal is (presumably) only being implemented because capacity has been lost, we are not sure of the ethical and legal basis of 'objections'? However, from a practical point of view, and in the non-hunger-strike clinical situation, we would think that force feeding would be inappropriate because of risk to the patient and of distress to the staff. In reality, the nurses would leave the food and drink beside the bed, or return later with something more appetising . . .
Q33. Would the courts be the most appropriate forum for deciding on the validity or applicability of an advance statement?
Q34. Should there be a specific offence of concealing or destroying a written advance refusal of treatment with intent to deceive?
We are not qualified to comment on the provisions of the existing criminal law. In the extremely unlikely event of concealment or destruction with intent to deceive we agree that there should be an appropriate legal penalty. There should also be penalties for deception, coercion and fraud where production of advance statements is concerned.
We will be briefer here. We are guided again by the principles set out in our Affirmation on Ethics and especially by the recognition that mentally incapacitated adults are particularly vulnerable examples of 'the helpless, the handicapped' and may therefore deserve extra protection in cases of doubt.
Q35. Should an attorney be able to consent to medical procedures which would otherwise require the approval of the court?
No. It is asking too much of some of the people likely to be appointed attorneys, and does not provide a sufficient check on the doctor.
Q36. Should an attorney ever be able to refuse treatment?
No. The attorney may be too emotionally involved, or the issues may be too complicated for them to assess them adequately. The patient deserves wider protection.
Q37a. Should the court be asked to rule on all proposed sterilisations for contraceptive purposes?
Yes. There is an important ethical principle here, and worrying recent precedents from France and Sweden.
Q37b. Should the court be asked to rule on all proposed sterilisations to relieve the existing detrimental effects of menstruation?
Yes. 'Relieving the existing detrimental effects of menstruation' could all too easily become a euphemism for eugenic sterilisation.
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. This would be an appropriate situation for a second doctor's certificate, where the criterion should be that sterilisation was foreseeable but not intended.
Q38. Should the donation of any organs be excluded from this general rule?
Q39a. Should it ever be necessary to consider an incapacitated person as a donor of regenerative tissue?
No. The principle of informed consent is too important. People should never be used as a means to an end.
Q39b. If so, should there be procedural safeguards similar to those which exist for non-regenerative tissue or bone marrow?
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 (37) above.
No. Although it is a discussion entirely separate from that of this Consultation Paper, Christian Medical Fellowship believes that the requirement of the 1967 Abortion Act that two doctors 'in good faith' certify the legality of an abortion according to defined criteria is not being met in the vast majority of cases. We are doubtful therefore of the merits of a second opinion as being an adequate safeguard when the pregnant woman has no capacity. We believe the court should rule in this situation.
iii. medical treatment for mental disorder?
Q41. The Government would welcome views on other procedures which should be added to the list proposed by the Law Commission.
Treatment of local or systemic disease that might foreseeably but not intentionally render the patient permanently infertile (see 37c).
Q42. Should the discontinuation of artificial nutrition and hydration be lawful for defined patients if certain statutory criteria are met?
There is not unanimity amongst CMF members. Some support the ethics of the withdrawal of food and fluid from the late Tony Bland, taking the BMA line that it was futile treatment in someone who was effectively dead already; others saw the tubefeeding as ordinary and effective care and its withdrawal as the intentional killing by omission of a patient who was not dying in any previously understood sense of the word.
We all agree that the decision altered previous understandings in British law about homicide, and were glad that the Courts stated that their decision applied to that case only, and that future similar cases must come to court.
We are interested that since Tony Bland died in March 1993, only ten or so cases have come before the court. Several thousand patients must have entered PVS in that interval, and many will have left it by natural death, yet only in a tiny percentage of cases has the court been approached. This may reflect deep-rooted intuitions held by families and health professionals.
Although divided on the ethics, CMF does not advocate any lower level of legal proof than at present.
Q43. Is 'patients who have no prospect of recovery who are either unconscious or in a permanent vegetative state' a suitable definition?
Suitable for what? Presumably for the legality of the discontinuation of artificial nutrition and hydration? Our views on the ethics of that issue are set out above (42).
We do not believe this is an adequate definition, but believe it weights diagnostic and prognostic ability too highly. There have been well publicised cases of astonishing recoveries from coma, and worrying reports of misdiagnosis. Can we be sufficiently sure that there is 'no prospect of recovery' to allow ethically decisions that have the intention of ending life?
It may be right in these thankfully rare cases to give the patient the benefit of the doubt.
Q44a. Should the court retain the exclusive right to make decisions on the withdrawal of artificial nutrition or hydration?
Yes. See (42)
Q44b. Should a person acting under a power of attorney be able to make such decisions?
Q44c. Could these decisions appropriately be made by the second opinion procedure?
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?
Q46. In considering the continuance or withdrawal from PVS patients of artificial nutrition and hydration, should regard be given to the best interests guidance?
There would be a range of views within CMF about whether PVS patients have best interests, and if so, how they are to be regarded. The reality of the condition is that the usual philosophical criteria do not apply, and we do not see how this question can meaningfully be answered.
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?
No. Informed consent is too important. People should not be used as a means to an end.
Q48. Should research procedures not intended to benefit the patient be allowed?
In general, no. However, we recognise that there might be some rare situations where non-therapeutic research could be ethical but we would want the most careful safeguards if it were ever to be considered.
Q49. Are the safeguards proposed by the Council of Europe adequate to ensure that any scheme would not be open to abuse?
No. We think expressions like 'the risks . . . are not disproportionate to the potential benefits' and 'the person concerned does not object' are too vague for clinical practice.
Q50. What, if any, additional safeguards would be required?
In paediatric practice there are guidelines and of course a guardian is consulted. We would suggest some independent legal opinion in addition to the ethics committees involved.
Q51. What benefits would a Mental Incapacity Research Committee provide over and above that provided by Local and Multi-Centre Research Ethics Committees?
We are generally opposed to non-therapeutic research on the mentally incapacitated. If therapeutic research is proposed, we see no need for another specific committee.
Brief comments on the health care aspects of later chapters.
We would want to see workable systems that demonstrated justice for the mentally incapacitated, and are both attracted by the simplicity of the concept of attorneys yet recognise with the House of Lords Select Committee on Medical Ethics special problems. In principle, we think proxies are safer than pieces of paper signed years earlier, but in practice proxies are known from the USA not to work well and there would have to be many safeguards.
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?
It should be considered. However, decisions by attorneys on health care should apply to more minor matters.
Q53. What safeguards would be needed to ensure these recommendations would work in practice?
There should be the best possible ongoing communication between the patient, the attorney and the relevant health professionals.
Q54. What safeguards would be needed to ensure that such a recommendation would work in practice?
Good practice should involve discussion with the attorney whenever possible, but the health care decisions for which the attorney could be responsible should be limited by statute, so that the most major ones required the approval of the court and some less major ones the second medical opinion procedure.
Q78. Should a court-appointed manager have the power to refuse consent to particular forms of health care?
Q79. Should a manager be able to consent to non-therapeutic research procedures?
Only exceptionally. We have already indicated (see 48) that non-therapeutic research should not generally be considered for the mentally incapacitated. In the possible rare exceptions, we would advocate careful safeguards and a high level of independent legal opinion.
Q80. is there a need for a new provision for compulsory admission to hospital?
We urge the Government not to legislate in the area of advance statements, and recommend great caution regarding treatment of and research on the mentally incapacitated.
Philippa Taylor (CMF Head of Public Policy) 020 7234 9664
Steven Fouch (CMF Head of Communications) 020 7234 9668
Alistair Thompson on 07970 162 225
Christian Medical Fellowship (CMF) was founded in 1949 and is an interdenominational organisation with over 4,000 British doctor members in all branches of medicine. A registered charity, it is linked to about 65 similar bodies in other countries throughout the world.
CMF exists to unite Christian doctors to pursue the highest ethical standards in Christian and professional life and to increase faith in Christ and acceptance of his ethical teaching.