Judges should let twins' parents decide

Conjoined twins, the correct name for Siamese twins, are rare, occurring once in every 50,000 to 100,000 births. The term Siamese twins was applied first to two brothers, Eng and Chang Bunker, born in Siam (now Thailand) in 1811. They became part of the Barnum and Bailey Circus in the United States and both married English sisters. They lived for 63 years.

The first successful operation to separate conjoined twins did not occur until 1912, although attempts had been made as early as 1689 in Switzerland. The operation is risky, complicated and lengthy, involving a large team of surgeons, anaesthetists and physicians.

Interestingly, views on this dilemma are impossible to predict: they do not fall along the conventional pro-life/pro-choice divide, or along religious or secular lines. It is clear that the parents, doctors and judges involved in the case of the Siamese twins, Jodie and Mary, are faced with a dilemma that is of enormous proportions and are treating it with due gravity and reflection.

The judges seem to be genuinely moved by the magnitude of responsibility that has been heaped upon them. The issues of concern are moral, legal and psychological.

The facts are stark: the babies, just a month old, are joined at the lower abdomen and share a heart and lungs. One twin, Mary, is weak while her sister, Jodie, is stronger. Both will die if not separated, since the heart will only be able to sustain both for a limited period.

Jodie, if she survives the operation to separate them, may be mentally handicapped but probably will not be physically handicapped. Mary will not survive separation since it is her sister who has the heart and lungs.

The parents do not want any intervention and have requested the Court of Appeal to overturn a court decision last week that gave the go-ahead for surgery. After hearing evidence this week, the appeal court adjourned its deliberations until next week.

Two ethical views prevail. The parents, on the one hand, contend that they love both children, that they see attempts at separation as active killing of the weak one and want nature to take its course, wherever that may lead.

It also could be argued, although so far it has not been definitively stated, that the separation operation is in itself an extraordinary intervention and that there is a legitimate argument against extraordinary means to preserve life. This could be argued even if both twins could potentially survive a separation. The parents thus have an honourable and ethical basis for their decision. The counter-argument, and one which the court supported last week, is that the parents' wishes should be over-ruled and the life of Jodie preserved by surgical intervention, even though this would definitely result in the death of Mary. It is accepted this is the only chance of survival which Jodie will have, since both will definitely die without treatment in three to six months.

The nub of this "double effect" argument is that the only chance of survival either has is to separate them, even though the death of one can be foreseen. This is identical to the arguments that allow for indirect but not direct abortion.

This approach itself may raise legal problems since "foreseeability" could be argued to be tantamount to culpability. For example, if a person throws an incendiary device with the sole intention of damaging property but somebody is accidentally killed, the fact that this could have been foreseen makes this manslaughter rather than the lesser crime of criminal damage to property.

However, it could be argued that if this rule of law were applied to all interventions designed to help the suffering, then doctors would be severely restricted in their daily practice. For example, the prescription increasing doses of pain-relieving medication to the terminally ill might in some cases lead to charges of murder if the doses that bring about such relief also lead to death, as the unintended effect (another example of double effect).

Similar problems could arise for doctors carrying out dangerous but necessary operations such as transplants, or for those who prescribe drugs that are necessary but with potentially serious side-effects. Again, the question of intention becomes paramount, morally and probably legally also, and since the mens rea to commit murder is absent, such a charge would hopefully not succeed.

One of the judges raised the legal status of Mary when he inquired: "The difficulty is, what is this creature in the eyes of the law?" Can she be considered to be alive under law? Some commentators say she is not, since she has no heart or lungs but shares them with another.

This, of course, reflects a narrow view of what constitutes life and seems to be suggesting it resides in the heart. The heart as the centre of life is a very potent notion, one that has spilled over into literature and poetry. However, the language of poetry does not rest easily with scientific understanding and beliefs deriving from emotion and linguistics, no matter how romantically appealing, have no business in this debate.

JUDGE Ward, one of the judges sitting on the case, raised the legal difficulty posed by this question (of whether she can be judged to be living) when he said: "The moment the knife goes into that united body it touches the body of unhappy little Mary. It is at that second an assault (if she is judged to be living)."

It is here, in trying to decide what constitutes life, that their lordships are on dangerous ethical ground and potentially pushing out the boundaries. They will, no doubt, argue they are only concerned with the legalities of the matter but would do well to accept the medical view of the function of the brain stem in maintaining life rather than attempting to derive insights from literature.

It is worrying that in reporting this case reference has constantly been made to the parents as coming from "a remote part of Eastern Europe" and to their Catholicism.

The basis for referral of this rare case by the hospital in Manchester, where the twins were born, to the courts for adjudication is unknown. It is to be hoped there is no inherent assumption that the parents are incapable of making a considered and ethical decision because of their ethnic origin or their religious beliefs.

In recent years we have seen the courts in Britain make decisions about the termination of nutrition to those in persistent vegetative states, about withholding antibiotics from mentally handicapped children against parental wishes, and a number of other life and death issues.

It seems doctors are abrogating responsibility for many difficult decisions and no longer have confidence in the ethical principles that have underpinned medical practice since its foundation.

Science has pushed out the frontiers of medicine and the courts are, unfairly, expected to make legal decisions about matters that are essentially ethical. In an ideal world the two would be synonymous but regrettably, that is not the case as there are, and have been, many practices that are morally indefensible but perfectly legal, such as capital punishment.

As well as posing legal and ethical questions, this case raises serious emotional issues. The fact of seeing photographs of the twins adds to the poignancy and the difficulty of the case. Therein also perhaps lies at least some protection for Mary and Jodie, since they can be seen for who and what they are - human, babies and siblings to each other and part of a family by whom they are both loved equally.

In making their decision, the judges may consider the effect the enforced death of Mary will have, on her sister and on her parents. The language of "rights" is familiar to all of us and is very useful in most situations. But it is essentially individualistic, focusing on the needs of a single person or group of persons.

Perhaps a richer, more holistic perspective is needed, in this instance, one which focuses on the hurt and agony to the family that Mary's death will occasion, the suffering that the parents will feel every time they look at Jodie and think of her sister.

Since there is no morally superior answer as to what should happen these babies, the judges should consider their parents and allow them the privilege of loving their children as they choose, not as the courts say they should.

Patricia Casey is professor of psychiatry at University College, Dublin, and consultant psychiatrist at the Mater Hospital, Dublin; from 1994 to 1999, she was a member of the Ethics Committee of the Irish Medical Council.