of them entirely convincing but all illuminating new facets of what is an important and obviously complex problem. References 1. GUNTHER M: The neonate's immunity gap,
breast feeding, and cot death. Lancet 1: 441, 1975 BALDO BA, HILTON JMN: IgE antibodies to Dermatophagoides pteronyssinus (house-dust mite), Aspergillus fumigatus, and fI-lactoglobulin in sudden infant death syndrome. Br Med J 1: 357, 1975 3. MULVEY PM: Cot death survey: anaphylaxis and the house dust mite. Med J Aust 2: 1240, 1972
2. TURNER KJ,
4. HILTON JMN, TURNER KJ: Sudden death in infancy syndrome in Western Australia. Med J Aust (submitted for publication) 3. SALK L, GRELLONO BA, DIEmIcK J: Sudden infant death: normal cardiac habituation and poor autonomic control. N Engi J Med 291: 219, 1974
Europeans and the spina bifida problem The earlier enthusiasm for maximal surgical treatment of infants with spina bifida has given place in some parts of Europe to a more pessimistic evaluation of the situation. The quality of life of those rescued by the surgeons has become a cause for concern, and the social and economic fate of these children has given rise to anxiety. Recently a number of European medical journals have discussed these complex issues, usually without coming to any definite conclusion. The ideal is prevention, and advances in antenatal diagnosis of spina bifida give us reason to hope for the future. Measurement of a-fetoprotein in amniotic fluid, and even in maternal serum, has pointed the way to future testing of women at risk. An editorialist in the British Medical Journal has pointed out that although results from only about 25 a-fetoprotein assays in amniotic fluid have been reported from pregnancies resulting in a child with spina bifida, the value has always been above the highest normal value for the gestational age, usually by a substantial margin.1 High maternal serum values have also been shown to be commonly associated with spina bifida. However, screening is still in its infancy, and for some time the problem of management of children with spina bifida will remain with us. Is the policy of selective operation on these infants, as suggested in the pamphlet "Care of the Child with Spina Bifida",2 ethically justified? Should one go further and apply euthanasia, active or passive, in some of these cases? In the first of a series of essays in Medisch Contact, the journal of the Royal Netherlands Medical Association, Ijsselmuiden3 stated with conviction that at present both active and passive euthanasia are unacceptable. What must be accepted by society and the medical profession is that with modern medicine a group of persons must be kept alive under conditions that are less than optimal. The physician must save life by all the means at his disposal and leave it to society to decide what sort of a life the child will have later. A previous study by de Lange4 had revealed a state of indecision among
Dutch neurosurgeons over operation for spina bifida. Some surgeons did not operate on patients with severe degrees of abnormality; others went so far as to consult the parents and let the parents' views influence their therapy. In another contribution in the series van Zeben5 said that he would advise the parents of a child with severe spina bifida and gross neurologic abnormalities against an operation, but if they decided otherwise he would give them all the help possible. Bins-Vunderink6 pointed out that in such matters the traditional medical ethical code is useless and physicians have not yet found a new one. She sees the crux of the matter as a more intimate dialogue between physician and parents, with the fullest information given to the latter and a decision taken in common. In Britain a working party set up in Newcastle upon Tyne, with medical and nonmedical participants, has produced a report on the ethics of selective treatment of spina bifida, in which it sees the problem as a conflict between two opposing basic ethical principles.7 One is the assertion that human life is sacred; the other is that relief of suffering is also a medical obligation and such suffering includes not only that of the handicapped child but also that of the parents. "Society suffers too, if only through having to bear the cost in money, resources, and dedicated lives in order to enable such children to survive and be provided for." in the opinion of this working party the physician has no ethical obligation to treat patients for whom the likely benefits are dubious. In the present state of medical knowledge, selection for treatment is therefore justified. But no general statement can override the responsibility of the physicians concerned to make particular decisions in individual cases. The fullest consultation with other physicians and with parents is recommended. The working party pointed out that those not selected for treatment will probably not live long, and they saw no need to shorten the child's life span further. The Swedish medical profession has also been troubled by this problem, and Blomquist and Giertz8 have reported
812 CMA JOURNAL/NOVEMBER 8, 1975/VOL. 113
the views expressed at a symposium arranged by the national medical association. This report, like others, can only give broad guidelines to selection, but the participants insisted that the decision to treat or not must be a medical one, taken in consultation. The parents should be included in discussions and their psychological and social circumstances taken into account. Most of the participants thought the parents had a right to veto treatment. For untreated patients they saw no reason to shorten life. In all this, of course, the most important person involved, the child, cannot be consulted. It is instructive to read an article by an intelligent woman who herself has a moderate degree of residual handicap from spina bifida: Boothman,9 of the University of Glasgow, has written her observations on the management of spina bifida, pointing out that society could do a lot more than it does to improve the quality of life for these children. She would like to see more survivors placed in ordinary schools in spite of the problems involved. "Why not give the community the opportunity to prove their willingness and ability to help their less able members?" Success in overcoming handicaps is not a matter for the individual but for all who come in contact with him or her. Maybe part of our medical dilemma is due to our knowledge that too many "normal" members of the community are unwilling to do just that. References 1. Antenatal diagnosis of spina bifida (E). Br Med J 1: 414, 1975 2. Care of the Child with Spina Bijida, London, Dept of Health and Social Security, 1973 3. IJSSELMUIDEN TJJ: De behandeling van pasgeborenen met spina bifida aperta (I). Ben revalidatieve benadering. Med Contact 30: i29, 1975 4. DE LANGE SA: Ben enqu.te over de behandeiing van pasgeborenen met spina bifida aperta. Med Contact 29: 887 1974 5. VAN ZEBEN W: De behandeling van pasgeborenen met spina bifida aperta (II). Artspatient-ouders. Med Contact 30: 153, 1975 6. BINS-VUNDERiNK N: De behandeling van pasgeborenen met spina bifida aperta (Iii). Patientenrecht en medische plicht. Ibid, p 179 7. Ethics of selective treatment of spins bifida. Report by a working-party. Lancet 1: 85, 1975 8. BLoMQuIsT C, Gnorrz G: Etiska aspekter pa behandling av barn med ryggmisrgsbrack. Lakartidningen 71: 5283, 1974 9. BOOTHMAN R: Some observations on the management of the child with a spins bifida. Br Med J 1: 145, 1975
breast feeding, and cot death. Lancet 1: 441, 1975 BALDO BA, HILTON JMN: IgE antibodies to Dermatophagoides pteronyssinus (house-dust mite), Aspergillus fumigatus, and fI-lactoglobulin in sudden infant death syndrome. Br Med J 1: 357, 1975 3. MULVEY PM: Cot death survey: anaphylaxis and the house dust mite. Med J Aust 2: 1240, 1972
2. TURNER KJ,
4. HILTON JMN, TURNER KJ: Sudden death in infancy syndrome in Western Australia. Med J Aust (submitted for publication) 3. SALK L, GRELLONO BA, DIEmIcK J: Sudden infant death: normal cardiac habituation and poor autonomic control. N Engi J Med 291: 219, 1974
Europeans and the spina bifida problem The earlier enthusiasm for maximal surgical treatment of infants with spina bifida has given place in some parts of Europe to a more pessimistic evaluation of the situation. The quality of life of those rescued by the surgeons has become a cause for concern, and the social and economic fate of these children has given rise to anxiety. Recently a number of European medical journals have discussed these complex issues, usually without coming to any definite conclusion. The ideal is prevention, and advances in antenatal diagnosis of spina bifida give us reason to hope for the future. Measurement of a-fetoprotein in amniotic fluid, and even in maternal serum, has pointed the way to future testing of women at risk. An editorialist in the British Medical Journal has pointed out that although results from only about 25 a-fetoprotein assays in amniotic fluid have been reported from pregnancies resulting in a child with spina bifida, the value has always been above the highest normal value for the gestational age, usually by a substantial margin.1 High maternal serum values have also been shown to be commonly associated with spina bifida. However, screening is still in its infancy, and for some time the problem of management of children with spina bifida will remain with us. Is the policy of selective operation on these infants, as suggested in the pamphlet "Care of the Child with Spina Bifida",2 ethically justified? Should one go further and apply euthanasia, active or passive, in some of these cases? In the first of a series of essays in Medisch Contact, the journal of the Royal Netherlands Medical Association, Ijsselmuiden3 stated with conviction that at present both active and passive euthanasia are unacceptable. What must be accepted by society and the medical profession is that with modern medicine a group of persons must be kept alive under conditions that are less than optimal. The physician must save life by all the means at his disposal and leave it to society to decide what sort of a life the child will have later. A previous study by de Lange4 had revealed a state of indecision among
Dutch neurosurgeons over operation for spina bifida. Some surgeons did not operate on patients with severe degrees of abnormality; others went so far as to consult the parents and let the parents' views influence their therapy. In another contribution in the series van Zeben5 said that he would advise the parents of a child with severe spina bifida and gross neurologic abnormalities against an operation, but if they decided otherwise he would give them all the help possible. Bins-Vunderink6 pointed out that in such matters the traditional medical ethical code is useless and physicians have not yet found a new one. She sees the crux of the matter as a more intimate dialogue between physician and parents, with the fullest information given to the latter and a decision taken in common. In Britain a working party set up in Newcastle upon Tyne, with medical and nonmedical participants, has produced a report on the ethics of selective treatment of spina bifida, in which it sees the problem as a conflict between two opposing basic ethical principles.7 One is the assertion that human life is sacred; the other is that relief of suffering is also a medical obligation and such suffering includes not only that of the handicapped child but also that of the parents. "Society suffers too, if only through having to bear the cost in money, resources, and dedicated lives in order to enable such children to survive and be provided for." in the opinion of this working party the physician has no ethical obligation to treat patients for whom the likely benefits are dubious. In the present state of medical knowledge, selection for treatment is therefore justified. But no general statement can override the responsibility of the physicians concerned to make particular decisions in individual cases. The fullest consultation with other physicians and with parents is recommended. The working party pointed out that those not selected for treatment will probably not live long, and they saw no need to shorten the child's life span further. The Swedish medical profession has also been troubled by this problem, and Blomquist and Giertz8 have reported
812 CMA JOURNAL/NOVEMBER 8, 1975/VOL. 113
the views expressed at a symposium arranged by the national medical association. This report, like others, can only give broad guidelines to selection, but the participants insisted that the decision to treat or not must be a medical one, taken in consultation. The parents should be included in discussions and their psychological and social circumstances taken into account. Most of the participants thought the parents had a right to veto treatment. For untreated patients they saw no reason to shorten life. In all this, of course, the most important person involved, the child, cannot be consulted. It is instructive to read an article by an intelligent woman who herself has a moderate degree of residual handicap from spina bifida: Boothman,9 of the University of Glasgow, has written her observations on the management of spina bifida, pointing out that society could do a lot more than it does to improve the quality of life for these children. She would like to see more survivors placed in ordinary schools in spite of the problems involved. "Why not give the community the opportunity to prove their willingness and ability to help their less able members?" Success in overcoming handicaps is not a matter for the individual but for all who come in contact with him or her. Maybe part of our medical dilemma is due to our knowledge that too many "normal" members of the community are unwilling to do just that. References 1. Antenatal diagnosis of spina bifida (E). Br Med J 1: 414, 1975 2. Care of the Child with Spina Bijida, London, Dept of Health and Social Security, 1973 3. IJSSELMUIDEN TJJ: De behandeling van pasgeborenen met spina bifida aperta (I). Ben revalidatieve benadering. Med Contact 30: i29, 1975 4. DE LANGE SA: Ben enqu.te over de behandeiing van pasgeborenen met spina bifida aperta. Med Contact 29: 887 1974 5. VAN ZEBEN W: De behandeling van pasgeborenen met spina bifida aperta (II). Artspatient-ouders. Med Contact 30: 153, 1975 6. BINS-VUNDERiNK N: De behandeling van pasgeborenen met spina bifida aperta (Iii). Patientenrecht en medische plicht. Ibid, p 179 7. Ethics of selective treatment of spins bifida. Report by a working-party. Lancet 1: 85, 1975 8. BLoMQuIsT C, Gnorrz G: Etiska aspekter pa behandling av barn med ryggmisrgsbrack. Lakartidningen 71: 5283, 1974 9. BOOTHMAN R: Some observations on the management of the child with a spins bifida. Br Med J 1: 145, 1975
