pp. 146-148 in Intractable Neurological Disorders, Human Genome Research and Society. Proceedings of the Third International Bioethics Seminar in Fukui, 19-21 November, 1993.

Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.

Copyright 1994, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Legal aspects of treatment for disabled newborn babies

Noboru Ienaga
Institute of Medical Humanities, Kitasato University, Kanagawa 228, JAPAN

1. Introduction

In Japan there seems to have been no legal suit cases on withdrawal of medical treatment for handicapped newborn babies. Does this mean that the law grants an absolute discretion to parents or the attending doctor (or them jointly),or that this problem has been overlooked by law enforcement agencies?

I guess that even in Japan more than a few doctors have been involved with this difficult issue in their ordinary practice. Should we be content with matters as they are? If not, is it better for legal agencies to supervise this practice, and for the court to intervene in the parent-doctor relationship and indicate legal limits to their discretion? Or should we look for a third way?

I will briefly consider how this issue has been dealt with in English court cases. In England, there have been several cases on this issue reported. These are: Re B (1981), Dr Arthur (1981), Re C (1989), and Re J (1990).

2. English court cases on the withdrawal of treatment for a handicapped baby

a) Baby B case (Re B, 1981). B was a newborn child suffering from Down's syndrome having intestinal blockage which would have been fatal unless treated. It was probable that if the operation was carried out, her life expectancy would be 20-30 years. After explanation of the operation her parents, being certain that it would be in the interests of the child to allow her to die rather than to live physically and mentally handicapped, refused to consent to the operation. But the doctor contacted the local authority who made the baby a ward of court and asked the court to authorise the operation. Though the court authorised this the attending surgeon who respected the wishes of the parents declined to carry it out, and so the local authority went back to the courts.

The High Court respecting the parents wishes rejected the petition, but the Court of Appeal overturned this. Lord Justice Templeman decided, "...the parents took the view that it would be the kindest decision in the interests of the child ... while great weight ought to be given to the views of the parents they are not the views which must necessarily prevail. ... Fortunately or unfortunately, in this particular case the decision no longer lies with the parents or with the doctors, but lies with the court. ... the duty of the court is to decide whether it is in the interests of the child ... (which is to decide) whether the life of this child is demonstrably going to be so awful that in effect the child must be condemned to die, or whether the life of this child is still so imponderable that it would be wrong for her to be condemned to die. There may be cases ... where the life of the child is so bound to be full of pain and suffering that the court might be driven to a different conclusion, but in the present case the choice which lies before the court is this: whether to allow an operation to take place which may result in the child living for 20 or 30 years as a Mongoloid, or whether to terminate the life of a Mongoloid child because she also has an intestinal complaint. Faced with that choice I have no doubt that it is the duty of this court to decide that the child must live".

In accordance with this decision the operation was performed, but against expectations the child only survived five years. No one could be found to adopt her although the Lords had suggested the chance of adoption was one of the reasons to reject the parent's wishes, and though newspapers reported that there were some offers to be temporary foster parents.

b) Dr Arthur case (1981). A baby suffering from Down's syndrome was born. By the time Dr Arthur, a consultant pediatrician, had examined the baby it had been fiercely rejected by its parents. The mother, particularly felt the baby would be a strain on her family and her daughter, and was not anxious to keep him. She discharged herself soon and did not see the baby again. Dr Arthur wrote on the case notes that the parents did not wish the baby to survive and directed that only nursing care be performed. He also prescribed 5mg of dihydrocodeine for him not less than every four hours at the discretion of the nurse.

Three days after birth the baby died, and Dr Arthur signed a medical certificate stating the immediate cause of death to be bronco-pneumonia with Down's syndrome as the antecedent cause. But a member of the staff of the hospital communicated anonymously with LIFE, an anti-abortion organisation, which had Dr Arthur indicted for murder. After a postmortem examination Dr Arthur was charged and sent for trial.

At the trial all the medical witnesses testified that Dr Arthur's conduct was in accordance with their medical practice. The judge directed the jury to decide whether Dr Arthur's conduct was only to set conditions where the child could die peacefully or was a positive act which was likely to kill the child. In the end the jury handed down a not guilty verdict.

c) Baby C case (In Re C, 1989). C was born prematurely, and was found to be affected with unusually serious hydrocephalus. There was not only a blockage of cerebral spinal fluid within the brain, but as a result the brain structure itself was poorly formed. Although she was 16 weeks old at the time of trial, she was the size of a 4 week old child, except for her head. She could only lay and cried as if irritated. She did not appear to see, nor to hear. She held her limbs in a stiff flexed position, and had generalised spascity of all her limbs. The only social response she made was irritable crying when handled. She was receiving the sedative chloral without which she cried as if in pain.

C became a ward of court, and the court ordered that she should receive such treatment, including surgery, as considered medically appropriate to her condition. Following this order the doctors operated on her and inserted a shunt only to relieve pressure off her brain. The local authority asked the court what further treatment should be given in addition to this, in the best interests of C if she suffered from some infection or illness. At the trial one of the foremost pediatricians recommended the following: "I do not believe that there is any treatment which will alter the ultimate prognosis, which appears to be hopeless. ... In the event of her acquiring a serious infection, I do not think that it would be correct to give her antibiotics, to set up intravenous infusions or nasal-gastric feeding regimes. Such action would be prolonging a life which has no future. However, the opinions of the local nurses and care givers should be taken into account, for they know her well. ... Thus if they believed that she was in pain or would suffer less by a particular course of action, it would be correct to consider that course of action".

Lord Donaldson M.R., based on this recommendation, decided as follows: This case could be distinguished from the Baby B case. "There was a difference of medical opinion on whether it was in B's best interests to operate. But in this case there are no such opinions. C is dying, and there is no medical or surgical treatment which can alter this fact." Then, he ordered that the baby be treated according to the recommendations of the above pediatrician.

d) Baby J case (In Re J, 1990). J was a premature baby, born after 27 weeks gestation, weighing 1100 grams at birth. He was not breathing so was placed on a ventilator and given antibiotics. He suffered very severe brain damage due to shortage of oxygen around the time of birth. He suffered paralysis of the arms and legs. He appeared to be blind and deaf, and was unlikely to be able to speak. But unfortunately he was likely to feel pain to the same extent as a normal baby.

He suffered recurring apnoea (cessation of respiration). When he was about 5 months old the court was asked what was to be done if J suffered another collapse. The public prosecutor submitted that a court was never justified in withholding consent to treatment which could enable a child to survive a life threatening condition, whatever the pain or other side effects inherent in the treatment and whatever the quality of life which it would experience thereafter. Lord Donaldson rejected such an absolutist approach and said, "...The doctors owe a child a duty to care for it in accordance with good medical practice recognised as appropriate by a competent body of professional opinion. ...(What) doctors and courts have to decided is whether, in the best interests of a child patient, a particular decision as to medical treatment should be taken, which as a side effect will render death more or less likely. ... (And Re B seems to accept) that there is a balancing exercise to be performed in assessing the course to be adopted in the best interests of the child. ... There is very strong presumption in favour of a course of action which will favour life, but ... account has to be taken of the pain and suffering and quality of life which the child will experience if life is prolonged. Account has also to be taken of the pain and suffering involved in the proposed treatment itself. (Perhaps he was indicating the invasive and hazardous nature of reventilation. But also he declared that) in the event of the child stopping breathing the provisional decision to abstain from mechanical ventilation could and should be revised, if this seems appropriate to the doctors caring for him in the then prevailing clinical situation."

3. Reflections

From reflecting on these few cases, we can not yet assert what principles have been established in English Law. But we may point out some trends.

a) We can see that there exists a very strong presumption in favour of action which will prolong life in the case of a handicapped newborn baby. But Re J rejected an "absolutist approach" (or "sanctity of Life" approach), which insists that no life-sustaining treatment should be withheld.

b) On the other hand, Re J criticized Re B in which it was said that "where the life of the child is demonstrably so awful that in effect it must be condemned to die". Re J declared that neither parents nor court has a "right to condemn to die", and it did not explicitly authorise withholding the treatment for C although she was "hopeless" and "dying".

c) Re B said that although great weight ought to be given to the wishes of the parents, the final decision lay with the court. But Re C and Re J seem to leave it to good medical practice or the discretion of the doctor's clinical judgement.

d) At Dr Arthur's trial medical witnesses testified that his conduct was in accordance with general medical practice. Though they seemed to depend on the BMA's Handbook of Medical Ethics, it only mentions that in the case of "severely malformed infants" the parents must decide. Ultimately, I wonder if in fact a Down's syndrome baby can be included in this.

According to some opinion surveys 90% of consultant paediatricians answered they would generally treat a Down's syndrome baby even if the parents had refused. On the other hand some 90% of the public did not consider a doctor who did not treat under these conditions to be guilty of murder. Thereafter no cases related to Down's syndrome babies have been reported. I wonder what current practice actually is. By the way after this the parent's right to decide has been deleted from the BMA Handbook. Dr Arthur's case arose through a third party's intervention, and so poses questions of the pro's and con's of this as well.

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