The text of a joint letter from the Chairmen of Reform, Forward in Faith and Cost of Conscience to the Lord Chancellor, in response to the Parliamentary Green Paper on euthanasia
As Chairmen respectively of Reform, Forward in Faith and Cost of Conscience, three independent Anglican organizations representing a wide range of traditions, we are writing to express our grave concern about the green paper “Who Decides?”, believing it to be a deeply flawed document especially in its treatment of the problems of medical procedures, advance directives and best interests, and therefore likely to give rise to dangerously faulty legislation in the Mental Incapacity Bill as a result.
Our reasons for thinking so are set out in the following submission. However, by way of background we would all insist that the three organizations which we represent are deeply caring bodies who are as concerned as any others to see human suffering kept to a minimum, and wherever possible avoided altogether.
As you no doubt realise, the Church of England and her sister bodies have been pioneers in the Hospice Movement, which has resulted in the provision of hospices available for the terminally ill in this country, and has come to be the envy (and benchmark) of those in the caring professions in other parts of the world which have not progressed as far as we have. It can now be confidently claimed that 95% of people who are terminally ill need suffer no severe pain once the correct medical treatment has been administered, and this involves no sedation which might result in diminished consciousness. This is an achievement in which doctors, nurses, hospice chaplains, parish priests, and not least the relatives of the terminally ill and the patients themselves have discovered that they can co-operate in a way which hitherto has not been possible.
It must be remembered that “Mental Incapacity” in this context covers not only those whose reason is impaired, temporarily or permanently by illness, but also those who at any given moment are, or are believed to be, incapable of making their wishes known regarding the continuation or otherwise of treatment to which they would otherwise be subjected. We are therefore dealing with circumstances under which people other than the patient are to be allowed, perhaps encouraged, to make decisions on his or her behalf on the basis either of what they know of his wishes at some time in the past, or of what they suppose to be “the best interest” of the patient.
For reasons which we will now submit, we believe that the current proposals are fraught with difficulties and pitfalls such as to make them worse than the status quo.
[The following abbreviations are used in what follows: MIB= Mental Incapacity Bill; WD= Who Decides? – the Green Paper]
In WD, “advance refusals” [including refusals of potentially life-saving treatment] are specified as being a particular instance of an “advance directive”.
Advance directives have a long and largely honourable history. Every properly drawn up Will is of the nature of an advance directive, and is of incalculable benefit, as those who have the administration of an estate of a deceased person will agree. As part of, or attaching to such a will it is reasonable for a person to express wishes about his or her treatment in the case of serious illness. Yet because such directives are potentially made at a time and under circumstances remote from that in which they would become operational, they can never have the same force as, for instance, a person’s directions to his or her Executors about the disposal of property at death. They can be invaluable as guidelines in taking a hard decision whether to administer a particular treatment or not; but they can never be the last word on the matter.
WD suggests (4.4) that advance refusals have “full effect at common law”?. This is very doubtful. In the three court cases cited in support of this opinion (Tony Bland, Re:T (1992) and Re:C (1994)) none was a case of such a directive being legally recognised once the person had lost capacity. Whilst a proper “advanced directive” may have some legal weight, and may certainly help towards resolving a genuine dilemma, it is certainly not something which is binding upon a doctor in an inflexible manner..
It would, we believe, be in nobody’s best interests to make such directives or refusals of treatment legally binding. It would remove from doctors the freedom to treat their patients in their best interests, which is a trust on which all good medical practice, particularly of those unable to give contemporaneous consent, is based. Where “removal of treatment” involves the withholding of food and/or water (as in the case of Tony Bland it did) the sufferings which such withdrawal involves may become acute.
Finally, on the subject of advance directives, it has to be re-emphasised that in English law there has never to date been an instance where an advance refusal of treatment was enforced by law after its author became incapacitated. Since the actual mental state of the author at the time of making the directive, and his or her current wishes are matters which can only be guessed at, we are in danger of bringing in a procedure with, literally, lethal consequences based on what at best can only be guesswork.
We recognise that nowhere in WD is there any suggestion that its purpose is to legalise euthanasia. Indeed it insists (WD 1.8 p2) that “euthanasia is illegal” and the Government “has no plans to change the law in this respect”.
However, the WD’s definition of euthanasia as “a deliberate intervention with the express aim of ending life” (1.8) explicitly excludes those actions (or inactions) such as starving to death, withholding drugs such as insulin from a diabetic, or failing to resuscitate in the event of temporary heart-stoppage, all on the grounds that they are held not to involve such an “?intervention”.
We find this argument totally specious. It is perfectly clear that (legally or morally) one may be equally culpable for failing to fulfil a duty, as for undertaking an action, if the intention in each case is identical. Many moral situations in life demand a correct positive intervention, and failure to provide it would be held to be as deeply culpable as any corresponding morally wrong intervention. For instance, not to attempt to restrain a person in one’s care with known suicidal tendencies from throwing themselves in front of a train, least of all because they were supposed to want to die, would be as culpable as assisting them to do so.
The restriction of the term “euthanasia” only to “positive actions”? is wholly unsustainable.
Hitherto the term “best interests”? as in the term “in the patient’s best interests” has been widely understood as comprehending such things as preserving life, maintaining or restoring health, minimising sufferings and at the same time attempting to maximise the patient’s autonomy and capacity to be involved in decisions and matters regarding their mobility, their family and their religious beliefs. Best practice involves, for instance, hospital chaplains taking extraordinary care to provide such ministrations in accordance with the traditions to which the patient has been accustomed.
WD in 3.23 proposes radical redefinition of the term “best interests” to exclude almost all considerations except those based on “autonomy” such as a patient’s ability to be involved in decisions affecting himself. But this desideratum already exists and is widely understood. The novelty is the removal of all the other desiderata mentioned above precisely at the point when the patient ceases to exercise that autonomy, or finds difficulty in doing so. It is therefore restricting the one thing which it is professing to promote.
In line with the MIB, WD does not recommend allowing patients to refuse “basic care”, for example cleanliness or hygiene. Basic care does not, however cover the matter of tube-feeding (indeed it excludes it from this heading). This means that whilst it may be illegal under the Bill to accede to the request by the patient not to provide food and water, it would be unlawful not to cease tube-feeding, whose consequences, death by starvation or dehydration would be precisely the same.
It needs to be stated that some refusals of basic care (by a patient) are unacceptable either because they are suicidal or because of the effect they would have on others. The patient who refused to be given proper cleansing, however little they desired it or cared about it one way or another, should not have their request granted because of the impact on health-care personnel, family or other patients. Likewise those who from a suicidal motive sought to compel doctors to connive in their deaths would be disregarding the moral difficulty in which they would place them.
Legitimate declining / withholding
It should be stressed that we do not hold the ‘vitalist’ position (that all possible treatment should be given in all circumstances to all patients). We recognise that in many circumstances patients decline treatment and doctors withhold it for legitimate reasons. Among these may be, for example, that the treatment in question is futile (this may be considered to be the case when an elderly patient contracts repeated infections in the terminal stages of an illness), or that the burdens involved outweigh the potential benefits. This may apply to patients who are able to decline treatment themselves, or to patients who lack capacity, for whom an often difficult clinical decision must be made in each case. Legally binding advance refusals would not resolve the difficulties however, but augment them with even more intractable ethical, moral and legal complications.
There again, we recognise that on the principle of double-effect, treatment may be given which hastens death, provided that death is not the aim, or any part of the aim, of those involved.
Finally, we believe that this Bill, which has no doubt the laudable intention of relieving suffering and granting people what are seen to be their “rights”? suffers from precisely the misunderstanding that many of those who pursue their “rights”? on behalf of themselves or others so often labour under.
Two clarifications are needed in order to set the record straight:
1) “Rights” and “Duties” are inseparable.
Any legislation which is based solely on the concept of giving people their rights, and which either ignores the rights of others or the corresponding duties which are entailed, is bound in the end to lead to injustice. We are well aware of the disastrous effect that the granting of “the right to die” in Holland has had, both on the public mind and on the medical profession. Old people are now afraid to go to their doctors; it has become increasingly difficult, if not impossible, to become employed as a doctor unless one is prepared to kill, from time to time, certain of one’s patients; the incidence of unlawful euthanasia is reliably estimated to exceed three-fold the number of legal endings-of-life.
Whilst we fully recognize that it nowhere advocates euthanasia, and indeed specifically states that it will continue to be illegal, the Bill will nevertheless, in some situations, legalise omissions designed and intended to bring about the death of a vulnerable person, which would currently be unlawful. We have to remember that those who campaigned most vociferously for the Dutch laws insisted that they would apply only to cases of unbearable pain, perhaps at the most a dozen or so every year; the figures for legal euthanasia last year amounted to more than four thousand!
2) Inalienable Rights
The Universal Declaration of Human Rights recognises that there are certain rights which may not be resigned or taken away however much an individual might wish, or see it to his advantage to do so. One of these is the Right to Life. To allow some of the provisions of the MIB, as WD suggests, to enter law would be to breach one of the fundamental liberties upon which our civilisation is based.
We hope that we have made our objections to the present recommendations for medical decision-making in WD, together with the reasons we have given, sufficiently clear for them to be carry due weight with those in whose hands the revision of this deeply-flawed piece of legislation, the MIB, rests.
+ John Broadhurst,
Chairman, Forward in Faith.
Chairman, Cost of Conscience.