When lifesaving treatment in children is not the answerBMJ 1997; 315 doi: https://doi.org/10.1136/bmj.315.7118.1246 (Published 15 November 1997) Cite this as: BMJ 1997;315:1246
A set of guidelines that reflect clinical and emotional reality
- Jonathan Gillis, Heada
Axioms in philosophy are not axioms till they are proved upon our pulses.—John Keats
Last month the Royal College of Paediatrics and Child Health produced guidelines on the withholding or withdrawing of lifesaving treatment in children.1 Such documents face the potential problem that in their attempt to achieve consensus the recommendations can become so vague as to say nothing. Any guidelines will find it difficult to achieve credibility in the face of the drama of a critically ill child, a drama in which the uneasy actors—parents; children; and nursing, medical, and allied health staff—so often find themselves painfully entrapped.2 When I first read the royal college's report I thought it a brave and dignified document which nevertheless stayed polite and superficial. But, with each rereading, I realised that in fact it is a remarkable report which does indeed make the leap to the bedside. It achieves sense and clarity without losing any connection with the emotions being played out in the theatre in which I and many others work.
The report's greatest contribution is in delineating “five situations where withholding or withdrawal of curative medical treatment might be considered”: the brain dead child, the permanent vegetative state, the no chance situation, the no purpose situation, and the unbearable situation.3 The report is refreshingly and remarkably child centered, although it acknowledges the key position that parents hold. Although the general thrust of the report is similar to that of many others on this subject, such as that of the American Academy of Pediatrics,4 the child orientation suffusing it gives it a subtly different and very acceptable emphasis.
Nevertheless, there are points to comment on. Firstly, the report perpetuates the view that, ethically, withdrawing and withholding therapy are equivalent. Theoretically this is no doubt correct, but, as the report itself confirms, that is not how it feels to either parents or staff. When most people who are actually dealing with these problems think that there is a difference between the two forms of medical action there is a strong case for revisiting the issue. Valid principles sometimes grow out of shared perceptions at the bedside.
Secondly, while the report acknowledges that withdrawing life saving treatment is not the same as withdrawing care, it nevertheless portrays palliative care as the soft option. This perpetuates the feeling that anything other than aggressive intensive care is second best. The practice of intensive care centres around the excitement of the moment, the rapid response, the spectacular success or the noble failure. Such a discourse by its nature cannot help equating withdrawal of treatment with no treatment. While the authors have been careful to address this with the addition of the words “life sustaining,” the word “withdrawal” is the dominant message. Withdrawal is the active, decisive step against passive second class alternatives. But the actual choice here should be about “managing the transition from one style of care to another” and “moving from a tactical approach (focusing on each intervention) to a strategic approach (aiming at defined goals)”.5 The ability to make such a choice may not be within the training of staff, who will then oscillate between continuing aggressive treatment and withdrawing abruptly rather than changing treatment direction.
Palliative therapy is not negative. It is overwhelmingly positive in the best traditions of medicine and nursing. It aims to provide as good a quality of life as possible, with the duration of that life becoming the second order consideration, but still important as long as the quality is maintained. Paradoxically, paediatric intensive care is sometimes the best place to start and continue palliative care. It is often the only place where team management comes together with the will and ability to look at the whole picture and apply immediate and aggressive solutions. In addition, withdrawal of life saving therapy is not an all or none phenomenon, but rather a strategy by which to test different treatments. This, although alluded to in the report, needs more emphasis to those who will have to put this into practice.
Thirdly, despite the complex issues involved, the report confirms that “it is usual in the individual case for there to be complete agreement of all concerned.” Sometimes, however, there is dissent when parents demand treatment that is considered futile by the healthcare team. Our own unit in Sydney has found this a particularly difficult problem. The report discusses this briefly and agrees that “there is no obligation to give treatment which is futile and burdensome.” Their solution to the problem of dissent is time, counselling, and then the courts (with no real support for the idea of ethics committees). This is a rather glib response to an extreme scenario where trust between staff and parents has broken down. It is not clear whether the authors consider that the courts would support the withdrawal of treatment in the face of parental opposition. Interestingly, the American recommendations are more wary of judicial review. Surely the ultimate solution must not lie in conflict at the bedside but in a policy discussion at government level about resource use: what society is prepared to provide and how far this can be influenced by unrestrained individual demand.
These are minor criticisms. This is an important document, which will grow in importance. I commend it for its dignity, its lucidity, and its sense of clinical and emotional reality.