Jodie and Mary: whose choice was it anyway?
That Gracie, the survivor of the Jodie and Mary Siamese twins, is doing well and returning home to Gozo with her parents shows that the judges' decision in this case was right. But it does not alter the fact that judges should not make these decisions.
The operation to separate the Siamese or conjoined twins Jodie and Mary took place in Manchester, England, in November 2000, after months of wrangling in the courts.
Mary died, as it was known she would. Jodie, or Gracie, survived and is now a bright 10-month-old, returning home to Gozo with her parents. The court has spoken, the doctors are satisfied, the parents were granted a full TV interview to express their views, and Gracie has the chance of a normal life.
Case closed? Hardly. The case brought into focus so many difficult and far-reaching issues in family and criminal law that the debate is likely to go on for years. One of the most important questions to emerge was one that challenged the role of the law itself: who should decide the fate of newborn children in such circumstances – their parents or the courts?
Jodie and Mary were born on 8 August 2000 at St Mary’s Hospital in Manchester, joined together at the lower abdomen. They each had their own head, arms, legs, brain, heart, lungs, kidneys and liver. The only shared organ was a bladder. There were severe ano-urogenital abnormalities and serious problems arising from the fusion of pelvic bones and the tips of their spines. Jodie seemed to have normal brain development, and her main organs were all working well. Mary had primitive brain function, her heart barely functioned, and her lungs did not function at all. She was surviving only as a result of Jodie’s heart pumping blood around her body. This effort was expected to weaken Jodie quite quickly and lead to her death, and thus that of Mary too, in about three to six months.
When the parents came to Britain seeking medical aid, doctors at St Mary’s Hospital proposed an operation to separate the twins. The operation would cause Mary’s immediate death, but Jodie was expected to have a good chance of surviving, and a reasonable chance, after further operations, of a full, healthy life with the ability to walk, control her bladder and bowels and have normal sexual function. The worst case scenario was that she might be wheelchair-bound with continence and sexual function problems.
The parents, Roman Catholics, wanted nature to take its course, that is, to allow the babies to die. They refused their consent to an operation that would give one of their children a good chance of life but would certainly kill their other child. The Central Manchester Health Area NHS Trust applied to the court for permission to operate without the parents’ consent. The High Court, and then the Court of Appeal, albeit on different grounds, declared that such an operation would be lawful.
At first sight it may seem obvious that the law should play the decisive role here. Parents have the first say in treatment where their children cannot give a valid consent themselves, but doctors have a duty to their patients as well, and of course society at large has an interest. Once born, a child is recognised as a legal person, and may be protected by the law from the harmful acts of strangers, doctors or parents. So, if a dispute arises, how else is the issue to be decided, but in court?
Some, however, would maintain that legal intervention in such an issue represented an intrusion into the private beliefs of the family, disrespected the moral autonomy of the parents, and was impelled by a trend that is as much about making parents conform to prevailing standards of behaviour as it is aimed at protecting their children.
In any event, it would appear that the public supervision of private matters of this sort is becoming more common and more intrusive, the conjoined twins case being just the latest example.
The law protects human life in different ways at different stages. The law protects the embryo from experimentation once the primitive streak has appeared or 14 days have passed, but not before. The law protects the fetus from a termination, but not during the first 24 weeks of pregnancy if medical opinion considers there to be a health risk (very broadly defined) to the mother or any of her children.
Furthermore, the law allows a mother to have a termination at any time before birth if medical opinion confirms a substantial risk of a seriously handicapped child being born. It should be noted, too, that a mother suffering from post-natal depression who kills her child in its first year will face an infanticide rather than a murder charge and be treated as if she had committed manslaughter. Beyond that, of course, the laws of assault, homicide, etc protect all legal persons, adult and child alike.
One situation that raises similar principles to the conjoined twins case is that of the pregnant woman who can seek a termination right up to term in cases where serious handicap is expected. The interests of the woman, as future parent with the extra burdens of caring for a seriously handicapped child, are simply given priority over those of the fetus – either because the fetus (handicapped or not) is not recognised as a person who can be wronged by a termination, or because a greater value is placed upon the self-determination of an adult than on the life of a seriously handicapped unborn baby.
In either case, it is not clear what the difference is between a seriously handicapped fetus a few days before birth and a seriously handicapped neonate (newborn) a few days after birth. Nor is it clear how the physical event of birth transforms a fetus into a person or confers a value on the handicapped neonate equal to that of a healthy adult human being.
However, the law confers legal personhood at birth, drawing a crucial line at this point for understandable reasons, not least the fact of separation and entry into the world. It is of course necessary to draw a line as to ‘when life begins’ at some point, and it may be necessary to apply it rigidly for the purpose of upholding its integrity. In any case, once the law recognised Jodie and Mary as legal persons who were children, there was only one decision to which the courts could come.
Under British law, if the jurisdiction of the court is invoked to protect a legal person who is a child, then the court must give ‘first and paramount consideration’ to the interests of that child. There is little flexibility; the interests of the parents must come second.
This is what happened in the case of the conjoined twins. The court declared that the twins were both legal persons entitled to the full protection of the law, and that the law required the court to act in the best interests of the children, and that it was not in the best interests of Jodie that she be allowed to die, even though that is what her parents wanted, and that Mary’s life should be brought to a premature end, even though that is not what her parents wanted. The paramountcy principle simply precluded the court from allowing the parental wishes to prevail.
The court held that it if it acted in the best interests of Mary (allowed her to live out her natural span of about six months) then Jodie would also die after about six months, and that if it acted in the best interests of Jodie (allowed the operation, and a chance for Jodie of a normal life) then Mary would die immediately. If it could not act in the best interests of both then it had to act in the best interests of at least one, and so it chose the lesser evil – lesser because Jodie would benefit more from the performance of the operation than Mary would from its non-performance. It further found (although the reasons given by the three judges differ considerably) that the consequent intentional killing of Mary during the operation would be lawful.
There is a limited analogy between the position of these parents and that of the pregnant woman actively seeking a very late termination of the pregnancy on account of the risk of a seriously handicapped child – even though the parents of the twins, as devout Catholics, of course never entertained the idea of an abortion themselves. In both cases the parents are prepared to sanction the death of their severely handicapped babies, one by termination, the other by refusing consent to an operation that could save one of the twins. One difference, however, is that the respect and mercy shown by the law to the pregnant mother is not available to the twins’ parents because their children have actually been born. Of course human beings who are born must have the protection of the law, although whether that protection has to be both full and immediate is less clear, as indeed the law on infanticide indirectly indicates.
The analogy is limited, especially because in the case of the conjoined twins the parents did not see themselves as sanctioning the death of Jodie by withholding consent from the operation, they saw themselves as refusing to sanction the death of Mary. They saw operating as actively killing one of their children in order to save the other. This they were not prepared to do, and they were also very worried at how they would cope financially and personally with a seriously disabled child (which they feared Jodie might be), especially in their relatively impoverished homeland.
In 1997 the Court of Appeal had reversed a High Court order that a transplant operation take place on a child a few weeks old against the mother’s wishes. Medical opinion was that the child would die within two and a half years without transplantation surgery, and the prospects of a successful transplant were good and in the patient’s best interests. In determining the best interests of the child the court gave special weight to the strong and reasoned parental objections – based on risk of failure, knowledge of pain and suffering involved, and the effect on the mother’s future care of the child were she made to bring him up against her wishes. This case was mentioned by the court in the conjoined twins case but not followed.
In a sense that is understandable. The law has to fix its lines somewhere, and the courts cannot afford to show much flexibility in matters of life and death without undermining the certainty of the law and the safety that bestows. We insist that the law protect the lives of human beings with special firmness and care. The strict formulations of the law can serve to restrain both errant individuals and also institutions such as government, the police or the national health service which might be tempted to adopt practices that hold life cheap. Both parents and hospitals are subject to the law.
Nevertheless, the law can be a blunt instrument. It is quite handy to have such an instrument to hand, but foolish to make use of it at every opportunity. Many people feel that this was the mistake the hospital made in this case. The parents were faced with the gross abnormalities of their conjoined children, the prospect of the certain early death of one and the survival of the other with a risk that she be seriously handicapped. Worse still, the survival of that child depended upon their agreeing to an operation that would cause the immediate death of the other.
On any account this was a deeply personal and private matter. Only the parents themselves would have to live with the consequences of their decision. It was a terrible situation, but their statement to the court, understandably anguished as it was, does not in fact show that they found it difficult to arrive at a decision. Their religious beliefs were strong, and their concerns about their own situation clearly articulated. They were certain that nature should be allowed to take its course.
The striking feature of the case is that the hospital authorities insisted on invoking the law. They were not prepared to let the parents have their way, but sought to impose their own view as to what should happen to the children. Their action bespeaks a boldness among healthcare professionals about the propriety of interfering in the private lives of their patients, and a readiness to resort to law rather than to accommodate the judgment of others.
In the court of appeal, Lord Justice Ward said that the hospital authorities were entitled to seek the Court’s ruling. He went out of his way, however, not to endorse the view that the hospital authorities were under a duty to refer the matter to the court, and he also said, ‘Other medical teams may well have accepted the parent’s decision. Had St Mary’s done so, there could not have been the slightest criticism of them for letting nature take its course in accordance with the parent’s wishes’. Later in his judgement, however, he said ‘if this court were to give permission for the operation to take place, then a legal duty would be imposed on the doctors to treat their patient in her best interests, ie, to operate upon her’.
It is an interesting position: it would have been lawful for the doctors to have accepted the parents’ decision and let the twins die; the doctors were entitled, but not bound, to seek a court ruling; having done so they were bound in law to accept the court’s decision – which was contrary to that of the parents.
He seems to be saying in effect that not everything has to be referred to the court, even those matters of life and death that the court would be constrained to decide differently. Something of the same diffidence about the role of the court is also evident in his opening comment on this topic:
‘There has been some public concern as to why the court is involved at all. We do not ask for work but we have a duty to decide what parties with a proper interest ask us to decide.’
Of course the judiciary protest too much as they extend their remit. They are however well placed to see the limits of the law and the limits of judicial activism. There are many problems that are best left to people to sort out among themselves, and the people most concerned with those problems should be trusted to sort them out and their judgement respected. It has come to something when it is the judges who are hinting that this is so.
John Fitzpatrick is director of the Kent Law Clinic, the coauthor of Criminal Justice and the Human Rights Act 1998, Jordans, 2nd edition 2001 (buy this book from Amazon (UK) or Amazon (USA)), and a contributor to Morals of Legitimacy: Between Agent and System, Berghahn Books, 2001 (buy this book from Amazon (UK) or Amazon (USA))
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