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CMF and LCF response to the Lord Chancellors Department on the Consultation Paper 'Making Decisions: Helping People who have Difficulty Deciding for Themselves'

Published: 9th July 2002

Introduction

Both the Christian Medical Fellowship ('CMF') and the Lawyers' Christian Fellowship ('LCF') are interdenominational. The CMF is the largest British Association of Christian Doctors and students with over 4,500 doctors and over 900 medical students throughout the United Kingdom and Ireland as members. CMF has members in all branches of the medical profession and through the International Christian Medical and Dental Association is linked with Christian colleagues in about 60 other countries.

CMF regularly makes submissions on a range of ethical matters to Governmental and other bodies. Examples are on the CMF website at www.cmf.org.uk/ethics/submissions/.

LCF has a membership of 1,300 throughout the United Kingdom. It has members in all branches of the legal profession, including the highest levels of the judiciary. It has a number of international links. It too makes submissions on ethical issues.

Liaison between CMF and LCF is close. We make this submission jointly because we believe the same things about the issues discussed in the consultation paper. We acknowledge that we are specifically best qualified to comment on Leaflet 2 ('A guide for health care professionals') and Leaflet 4 ('A guide for legal practitioners'), but many of our comments on those documents necessarily apply also to other parts of the Consultation Paper.

Our overall response to the consultation paper

We welcome the Paper and the associated leaflets. We agree that there is a need to give guidance about how to help people who have difficulty deciding for themselves. We share the Paper's concern about the exploitation of vulnerable people. We think that the leaflets, by and large, do a good job in giving simple, accessible, practical guidance.

We start from the belief that every person, regardless of his physical or intellectual capacity or any other characteristic, has infinite worth. A corollary of that belief is that we have enormous respect for the decisions that are made by each individual. But the right of individuals to make decisions and act on them cannot, in any civilised society, be absolute. There are legally accepted and morally inevitable limits to personal autonomy. Individual decisions have to be made with regard to the welfare of other members of society. Thus a burglar's decision to burgle someone else's house is not and should not be tolerated. A good and recently topical example is the case of Diane Pretty. Mrs Pretty's Article 8 right to self-determination had to give way to the legitimate protection afforded to a big class of vulnerable individuals by s. 2(1) of the Suicide Act 1961.

We do, however, have some specific concerns, notably in the area of Advance Directives. We also comment on the Covering Statement on pp 4,5 of the Consultation Paper and on leaflets 2 and 4.

Advance Directives: general comments

Patients should have the maximum possible involvement in their healthcare. We accept that Advance Directives can sometimes help in indicating what a patient's wishes would be. But Advance Directives have certain important limitations. We mention some of these below.

1. Advance Directives assume that prognosis is a precise art: It is not Advance Directives almost always refer to prognosis. They typically refer to a medical state 'which is likely to be irreversible'.
2. Prognosis is like weather forecasting. It is often right. It is often wrong. In particular the prediction of life expectancy is frequently highly inaccurate. No experienced doctor will disagree. A requirement that prognosis is assessed by more than one doctor of course helps to reduce errors which arise from wrong assessment by an individual: it does nothing to reduce the error which is inherent in the nature of the prognostic exercise.
3. Prognosis presupposes diagnosis. However the difficulties of establishing a diagnosis in many conditions relevant to Advance Directives are well-documented. For example, only about half of the cases of Persistent Vegetative State ('PVS') are correctly diagnosed. The diagnosis and prognosis of cancer is beset by similar difficulty.

Advance Directives indicate the patient's past, not present attitude

A great deal can change between the execution of an Advance Directive and the time when it becomes relevant to consider that Directive. Examples of important factors that might change are as follows:

(a) The patient has become ill

Most Advance Directives are made by healthy people contemplating serious disability or illness. It is a common experience for clinicians to observe major changes in patients' attitudes and wishes with the onset of serious illness. Life often seems more precious when it is more precarious. It is significant that most patients, when confronted with the choice between death and a seriously disabled life, choose life. In a study of 21 patients who had suffered paralysis of all four limbs and whose lives were sustained by artificial respiration only one said that she wished that she had been allowed to die. Two were undecided. The remaining 18 were satisfied that the decision to undertake artificial respiration was correct. It seems likely that many of the 18, if asked when healthy to envisage a tetraplegic life, would have chosen death.

(b) Advances in medical science and treatment

Medical science moves rapidly so that a condition that had a poor prognosis at the time an Advance Directive was made might become treatable. Pain and symptom control is now considerably better than it used to be, and increasingly sophisticated nursing care can make the lives of those with a disability much more fulfilling.

(c) Patients' views and circumstances change

Many events in life can influence one's attitude to disability. These include changing family circumstances and changes in religious or philosophical convictions.

For the above reasons every effort every effort should be made to ascertain the patient's current wishes. Often, communication, though difficult, is possible. In such cases, every effort should be made to discover what the patient really wants rather than simply relying on the Advance Directive.

Many people who draw up Advance Directives recognise the impossibility of envisaging the future with any precision, and are prepared for flexibility in its application.

In a 1992 North American study, 150 mentally competent patients on dialysis were asked how much leeway their doctors should have to override their Advance Directives concerning 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'. Thus 61% of those who had made Advance Directives thought that their best interests would or might well be best served by the Directive being ignored.

Coerced and fraudulent Advance Directives are a real risk

Some people in a position to benefit financially or otherwise from a patient's death may press patients to agree to Advance Directives which the patient might otherwise not have made. The feeling 'I don't want to be a burden to my carers' may be exploited by unscrupulous carers, potential carers or potential beneficiaries.

Advance Directives: comments on the leaflets

We think that the leaflets appear to advocate Advance Directives too strongly, in particular by: (a) failing to indicate any of the drawbacks to Advance Directives; and (b) overstating the legal effect of Advance Directives.

Failure to indicate the drawbacks of Advance Directives

This is particularly evident in Leaflet 6. The impression left is that, although Advance Directives may not have the effect of ensuring that the patient gets a specified treatment, they are free of risks and drawbacks. As our commentary at paragraph 3 above indicates, this is not the case. The case for Advance Directives is just not as simple as the leaflets imply.

Overstating the legal effect of Advance Directives

1. The leaflets say
   a) That an Advance Directive about future positive treatment is not binding; and
   b) That an Advance Directive re future refusal of treatment is binding 'so long as [it] is clear and is applicable in the particular circumstances in which treatment is proposed.'
2. Proposition (a) is correct
3. Proposition (b) is a fair summary of what the court said in Re T (Adult: Refusal of Treatment), but that formulation begs a number of questions that can only be answered by looking at the general law of consent.
4. The law is clear about the duty of a clinician to a patient under his care who is, for whatever reason, unable specifically to consent to treatment. The clinician can provide the treatment that he reasonably believes is in the best interests of that patient. Indeed there is a duty to provide such treatment. There is one exception to this rule: the clinician must not provide treatment that he knows that the patient, if competent, would not consent to. The classic example of this exception is Malette v Shulman, in which a doctor who knew that the unconscious claimant was a Jehovah's Witness and would not have consented to a blood transfusion, nevertheless carried out a life-saving blood transfusion because he believed that it was in the claimant's best interests. The 'best interests' principle was irrelevant here: the doctor had no defence to allegations of assault.
5. Re T and the other (obiter) comments about Advance Directives in Airedale NHS Trust v Bland do nothing to alter this general principle. Whether an Advance Directive exists or whether one does not, the doctor has a duty (breach of which can result in liability for damages or professional or criminal censure) to do what is in the patient's best interests, unless he knows that the patient, if able to do so, would have forbidden him to do what was in the patient's best interests.
6. All that an Advance Directive which is apparently applicable generally to the clinical circumstances does is to provide more evidence than there would otherwise be about whether or not consent for the 'best interests' treatment would have been given. No Advance Directive can ever be absolutely specific about the clinical circumstances. It will never say: 'If my blood pressure is x and my biochemistry results are y, and if an initial trial for z days with drug A has produced no objectively verifiable improvement (using parameters B, C, D, and E), and there being at the time no alternative drugs being discussed anywhere in the world literature which might work, then I ask that treatment be withdrawn, understanding that the inevitable result of such withdrawal will be my death.' In the absence of such specificity and in the absence of confirmation that nothing has happened to the patient between the making of the Directive and the time when it becomes relevant which would cause him to alter the view expressed in the Directive, it is at least arguable that it would be unlawful for the doctor to fail to apply the best interests test and treat the patient. Certainly no court or disciplinary tribunal would be likely to censure a doctor who provided life-saving treatment in this situation: this is certainly not a Malette v Shulman type case. Indeed there are few cases as blindingly simple as Malette.
7. Advance Directives about the withdrawal of the basic necessities of life (food, water, warmth) are not binding. This would be contrary to Article 3 of the ECHR. There was a conviction of parents for the omission of duty to provide food for children: R v Gibbons and Proctor (1918) 13 Cr.App.R 134.

The need to keep Advance Directives updated

It follows from some of our objections to Advance Directives that if they are to provide useful information about a patient's current view then: a) They need to be updated regularly to take account of a patient's changing views and circumstances; and b) The updating needs to take into account changes in medicine and nursing.

The position of clinicians who object to the withdrawal of treatment

1. The leaflets say in a number of places (eg Leaflet 2: p. 33): 'So long as the advance refusal of treatment is clear and is applicable in the particular circumstances in which treatment is proposed, health care professionals are bound by that earlier decision, even if they or the patient's relatives or carers disagree with it....' (Our emphasis).
2. If an Advance Directive is binding or a current declaration re withdrawal of treatment is competently made, then it is of course true that to continue to give such treatment will constitute an assault: see, for example, the decision of Butler-Sloss P in the Miss B case. However the same case of Miss B made it clear that individual clinicians were not obliged to participate in the withdrawal: it was the responsibility of the NHS Trust to arrange for the patient's wishes to be complied with. This distinction is important and the leaflets need to make it clear.

The leaflets' reference to the Voluntary Euthanasia Society (4.6.1).

We find this extraordinary. Reference to the Voluntary Euthanasia Society should be removed from the Consultation Paper. Its inclusion inevitably gives the impression of endorsement of a campaigning organisation whose objective is diametrically opposed to the policy of the GMC and BMA.

The Covering Statement

This is at pp.4-5 of the Consultation Paper. It states, inter alia: 'Every adult has the right to make their own decisions and must be assumed to have capacity to do so unless it is proved otherwise.'

This oversimplifies the law. That was made clear in Pretty v UK, where the European Court of Human Rights considered that s. 2(1) of the Suicide Act 1961 may have infringed Dianne Pretty's right to self-determination under Article 8(1) of the ECHR. The Court said that such an infringement was justifiable under Article 8(2) because s. 2(1) protected a vulnerable class of individuals. A more accurate statement of the law, post Pretty v UK, would therefore be: 'Every adult has a right to personal autonomy. That right, in any democratic society, is necessarily qualified by: a) other people's rights of personal autonomy; and b) the need for laws to protect the population generally. Such laws may restrict individuals' rights. '

Leaflet 2: A Guide for Healthcare Professionals

'How capacity is assessed': p.30

1. The first four bullet pointed questions are nothing to do with the assessment of capacity: they are to do with how much information to convey and how to make the most of the capacity which the person has.
2. One of the questions the leaflet suggests should be asked is: 'Does the person have all the information or a sufficient amount of information needed to make this decision?'
3. This formulation begs the question: What is 'a sufficient amount of information'? A better formulation would be: 'Does the person have all the information relevant to the decision in question?'

'Fluctuating capacity': p.31, 'Consent to treatment': p.33, 'Refusing treatment in advance': pp.33-34, and 'Best interests': p.34

1. All our comments about Advance Directives apply here.
2. The comments about 'best interests' not being confined to 'best medical interests' accurately set out the law in Re S, but, particularly in the light of the Miss B case, need to emphasise: a) the need not to substitute one's own views about values, relationships, quality of life issues etc for the patient's own; and b) the need to be cautious about accepting the statements of relatives, carers etc which pertain to the issue of medical treatment.
3. The need to preserve patient confidentiality is mentioned, but no guidance is given about how to resolve the competing demands: a) of preserving confidentiality; and b) of obtaining sufficient information to enable the clinician to act in the patient's best interests/according to the patient's presumed wishes. Such guidance is needed.
4. The notion of implied consent to disclosure of information is the key to resolving these competing demands. This approach is legitimised by the decision of the Court of Appeal in R v Department of Health ex p Source Informatics, which makes the conscience of individual data holders the touchstone by which the legality of disclosure is judged. It is therefore correct to say that a clinician, in his efforts to ascertain what the best interests of a patient are, or what that patient would have wanted had he been competent, is entitled to disclose such information about a patient's medical condition and treatment as: a) he conscientiously and reasonably believes the patient would have consented to disclose; and b) which it is necessary to disclose to such persons as: a) he conscientiously and reasonably believes the patient would have consented to the information being disclosed to; and b) to whom such disclosure is necessary for the purposes of ascertaining the patient's best interests/what the patient's intentions would have been if competent. We acknowledge that this form of words is rather laborious, but the law is not simple, and rather complex guidance is better than no guidance at all.

'Recovering capacity': p.37

We suggest that the final paragraph of this section should be slightly rewritten as follows: '.....a person with dementia who is prescribed anti-dementia medication may appear to regain (and in fact regain) full mental capacity. This recovery may only be temporary.'

Leaflet 4: A Guide for Legal Practitioners

Most of the comments we have made above apply equally to parts of leaflet 4.

We have only one further comment. The leaflet states: 'Ultimately, lawyers must act on their client's instructions or cease to act on their client's behalf.'

Since the leaflet deals primarily with the problem of clients who cannot give valid instructions we think that it is important to amend this. We suggest: 'Ultimately, lawyers must act on their client's instructions, or otherwise legally on their client's behalf if the client cannot give instructions, or cease to act on the client's behalf.'

Summary of the issues for consultation

Most of our views have been expressed above, but in response to the specific questions raised:

Question 1: Yes. Leaflets 2 and 4 would be useful to healthcare professionals and legal professionals respectively.

Question 2: Yes. As discussed above, we think that there needs to be more discussion of the limitations of Advance Directives, and the potential advantage of a proxy decision maker.

Question 3: Yes. It is well and clearly written.

Question 4: Yes. The layout makes the information accessible and easily understood.

Question 5: Generally yes. The reference to the Voluntary Euthanasia Society is a glaring exception.

Question 6: Getting information to healthcare and legal professionals is generally effective through the well-known professional organisations and publications.

For further information:

Steven Fouch (CMF Head of Communications) 020 7234 9668

Media Enquiries:

Alistair Thompson on 07970 162 225

About CMF:

Christian Medical Fellowship (CMF) was founded in 1949 and is an interdenominational organisation with over 5,000 doctors, 900medical and nursing students and 300 nurses and midwives as members in all branches of medicine, nursing and midwifery. A registered charity, it is linked to over 100 similar bodies in other countries throughout the world.

CMF exists to unite Christian healthcare professionals to pursue the highest ethical standards in Christian and professional life and to increase faith in Christ and acceptance of his ethical teaching.