Response to Royal College of Paediatrics and Child Health
Document
'Withholding or Withdrawing Lifesaving Treatment
in Children: A Framework for Practice'
September 1997
Introduction
As doctors within the Catholic moral tradition we welcome the serious approach that this document makes to some of the most difficult decisions which arise in clinical practice. We regret that no formal Catholic input was available as we think it might have been helpful.
Background Considerations (Chapter 2)
We welcome the statement 'Granted the commanding presumptions in favour of life, the Health Care Team has a duty of care with the primary intention of sustaining life and restoring their patients to health. Whether or not the child can be restored to health there is an absolute duty to comfort and cherish the child and to prevent pain and suffering.'
Regarding the legal obligation, we agree the situation is inconsistent as a result of the Bland Judgment, but this inconsistency could have been avoided by correctly distinguishing between basic care and medical treatment. The report of the House of Lord's Select Committee on Medical Ethics considered that decisions on withdrawal of food and fluid would not have arisen if discontinuation of antibiotics had been agreed by Tony Bland's family and the health care team at an earlier singe. (Report of the Select Committee on Medical Ethics. HMSO - 31.1.94, p52, s.257). We return to this point later.
The law on homicide cannot be determined by reference to a settled body of medical opinion; the procedure known as the Bolam Test. It has been challenged in both the British and Australian Jurisdictions; it is only used in connection with medical negligence in Civil Law. Thus we do not agree with the suggestion that 'decisions concerning withholding or withdrawing treatment in the best intentions of the child would probably need to fulfil the Bolam Test. (2.3.1.2).
We do not agree that there is 'no significant difference between withdrawal (stopping) and 'withholding treatments given the same clinical objective'. (2.3.2.1).
We do not agree that a patient who is stable and not deteriorating, can have treatment withdrawn for the same reasons as not initiating it. In particular, we would not agree that a patient paralysed for ventilation, can have ventilation withdrawn whilst the paralysis is still present. (2.4.3). This would be certain to cause death directly and is virtually indistinguishable from the method used in euthanasia deaths, namely paralysis of breathing.
On the subject of euthanasia we warmly welcome the statement that the 'Ethics Advisory Committee of the Royal College of Paediatricians and Child Health is unanimously against euthanasia.' (2.4.3). The statement would have been strengthened, however, by the definition of euthanasia. A definition from a Catholic source, which has now gained wide acceptance, is that 'euthanasia is an act or omission which by itself and by intentions causes death for merciful reasons.'
We welcome the statement 'Where withdrawal of ventilatory support does not lead to death ..... the lives of unexpected survivors, even when badly disabled, should be respected and they should be cared for appropriately.' (2.4.3) We agree that unexpected survival is not a criticism of the decision to withdraw treatment. It also introduces a candid and realistic admission not often seen in medical documents.
Regarding children's competence to make treatment decisions, (2.6) we accept the principle that children who are aware of the relevant facts and can weight then should have their decisions respected, but consider this is fraught with difficulties. In practise some of these difficulties arise from the way in which children are often swayed by the immediate consequences of treatment such as the need for vene-punctures; or their judgment may be affected by the illness itself. For example, we would have reservations about children suffering from anorexia making treatment decisions because of the psychopathology of their attitude to food.
In the sections on impairment, disability and handicap (2.7) we are concerned at the inconsistency bordering on contradiction between the statements at 2.7.1. that 'many people with severe handicaps describe a life of high quality and say they are happy to be living' and 'disabled children and adults may not view residual disability as negatively as some able bodied people do, provided adequate support is available' and that at 2.7.3 'It is possible to envisage a level of disability that doctors believe to be intolerable, i.e. no reasonable person would want to live with it and yet an individual sufferer may attach value to their existence'.
For children who cannot and may never be in a position to indicate their wish to live, the danger of an arbitrary standard of so called 'quality of life' being imposed by an able bodied professional is very great. Legislators and courts may be unduly influenced by a body of medical opinion which may not even represent tho best medical practise.
The value of continuing life is a moral question and human dignity, properly understood, is not lost by dependence, disability, deformity or degenerative disease. All human life retains moral worth and is of inestimable value.
The Process or Decision Making
In the discussion of decision making (Chapter 3) there is no recognition that a conscientious objection from a member of the Health Care Team may arise. We consider this is most likely to arise when a decision to cease assisted nutrition is made. We would particularly deplore any situation arising in paediatrics where persons are actively discriminated against in training, or in appointments. Conscientious objection is most difficult for junior doctors or members of the nursing team.
The discussion on the withdrawal of assisted nutrition and fluids in patients with the persistent vegetative state (3.1.3) seems to show no recognition whatsoever of problems relating to thirst. It has been recently pointed out that a substantial body of medical and scientific evidence describe the thirst centre as being situated in the hypothalamus and that without specific evidence of hypothalamic damage one may not assume adipsia. (Thirst in relation to withdrawal of hydration - McCullagh P., Catholic Medical Quarterly, Feb. 96, vol XLVI, No.3, (269) p.5-12). But we are aware that PVS, a difficult diagnosis in adults, is even more problematic in children.
Regarding the situations in the summary where the withholding of curative medical treatment might be considered :-
- The Brain Dead Child - when the accepted criteria have been applied, we agree that the withdrawal of medical treatment is appropriate.
- The Permanent Vegetative State - although we agree that medical treatment may he withheld or even withdrawn if it is futile or burdensome, we consider that fluids and nutrition are a part of basic care.
- The 'No-Chance' Situation - where medical treatment simply delays death with no significant alleviation of suffering. We agree that medical treatment in this situation is inappropriate.
- The 'No-Purpose' Situation - where the child may survive the treatment but with physical or mental impairment. We do not accept a. judgement that life would not then be worth living. We do not see how this can be judged by another and we note that most disabled, even severely disabled, persons can experience contentment and tranquility once their basic needs are met. We are afraid that this group of children will be arbitrarily and subjectively judged by able bodied persons and there is a danger that the value of their lives will not be recognised.. We do not consider that their lack of capability for '....... taking part in decisions regarding treatment or its withdrawal' should be determinative in any way.
- The 'Unbearable' Situation - where the child or family feel that in a situation of progressive and irreversible illness further treatment is more than can be borne, we agree that treatment considered excessively burdensome may be withdrawn.
CONCLUSION
- The document provides a framework for decision making about the withdrawal or withholding of life saving treatment in sick children. In our view a contribution from the Catholic tradition would have been of assistance especially in providing a definition of euthanasia.
- There are some inconsistencies over the burden of disability which we believe leaves document open to a wider intention than the authors intended. The juxtaposition of references to medical treatment and nutrition are likely to lead to the view, mistaken as we see it, that continuation of nutrition and fluids are an option dependent on medical judgement. We hold that to nourish a fellow human being in a manner appropriate to their condition is a human duty.
- There are too many unanswered questions about the persistent vegetative state to justify the firm conclusions given in the guidelines.
- In addition there is a failure to recognise that members of the medical team may very properly hold conscientious objections to certain courses of action. This must not become a reason for excluding them from this important area of medicine. Indeed their commitment and values most particularly enable them to work with these difficult children who can be happy and fulfilled when correctly cared for.
November 1998
Signed by:
The Lord Craigmyle, President, Catholic Union of Great Britain
Mr Patrick Coyle F.R.C.S., K.C.S.G, Master, Guild of Catholic Doctors
Dr A. P. Cole F.R.C.P., D.C.H., Chairman, Joint Ethico-Medical Committee