Published: 9th July 2002
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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. '
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.'
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.'
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.
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 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.