Heart and Soul: The Case of the Conjoined Twins
In September, news reports from England described yet another medical tragedy, complicated once more by the additional burdens of decision-making that medical technology now imposes on us. Congenitally joined (Siamese) twins were born on Aug. 8 in Manchester, sharing one heart and one set of lungs between them. Their parents had come to England from their home in Malta seeking help for their abnormal but as yet unborn children. After the birth, doctors opined that without surgery both infant girls would eventually die. They proposed to separate the twins surgically, with one retaining the heart and lungs and the other being left to die. The parents refused, citing their Catholic faith. Their decision was supported by their local priest, as well as by Archbishop Cormac Murphy-O’Connor of Westminster, who insisted that the separation would be morally impermissible. The physicians brought the case to court, and a panel of British judges subsequently ruled that the surgery could proceed against the parents’ wishes. Although church officials decried the decision, the parents decided not to contest the court’s ruling. On Nov. 6 the 20-hour operation to separate the twins was performed. One, called Mary by the court, is now dead. The other, named Jodie, remains in critical condition following the surgery.
Besides the obvious human tragedy of the situation, it also struck me as tragic that all parties at every step of the way advised these parents with narrow reasoning and had drawn faulty conclusions. The doctors, the clergy and the courts all played a part in compounding these already tragic medical circumstances by infusing them with moral molasses.
The Medical Advice
The doctors in this case seem to have decided that surgery to separate the twins was the only medically proper course of action. This might have been sound if given as advice, but it seems a bit hasty as a conclusion. The physicians could not claim to know from experience that their prediction would be correct. It is not as if there have been thousands of such cases described in the medical literature. I also wonder a bit about the hubris with which they made their prognostic claims about the certain death of both infants without the surgery and assessed the probability of success of their surgical procedure at 80 percent. The 20-hour procedure was not as simple as cutting an umbilical cord.
Further, I wonder about the extent to which medical alternatives were explored. For instance, one might have considered a heart-lung transplant for the twin who would otherwise die, postponing surgery until a donor could be found. Published reports do not provide enough medical information to know whether this was feasible. But if it were, such an alternative would have provided a chance to attempt to save both lives, thereby solving the parents’ dilemma, which they saw as a kind of Sophie’s Choice. I also wonder if this possibility was never mentioned because Mary was thought to be retarded and perhaps on that account unworthy, in the doctors’ view, of such a costly procedure. Finally, given the facts of the case, it seems cynical that the doctors attempted to reassure the parents after the surgery by stating, Unfortunately, despite all the efforts of the medical team, Mary sadly died.
The Pastoral Advice
The parents had sought advice from their Maltese clergy, who advised them that Catholic teaching would not permit the surgery. Archbishop Murphy-O’Connor, who gave testimony in court on the parents’ behalf, stated, One cannot commit a wrong that good may come of it.
This principle is certainly a solidly true Catholic moral belief, but I do not believe it was strictly applicable in this case. It would be immoral to rip the heart out of one living infant with mental retardation in order to give it to another infant with a normal brain but no heart. It seems that this may be the way the parents and their pastoral advisors viewed the surgeryas a technological version of an Aztec sacrificial rite. But good ethics depends upon good facts, and the medical facts really do not support this interpretation.
The heart and lungs clearly belonged to one of the twins, Jodie. The other, Mary, had an aorta but no heart, and was completely dependent upon Jodie’s circulatory system through a connection at the aorta. Thus, in a way, Mary was receiving life-support from Jodie, whose heart and lungs were supplying her with oxygenated blood. How long this could have continued is uncertain. The doctors were of the opinion that the strain Mary was placing on Jodie’s heart and lungs meant that Jodie could last for only six months. After that, they believed, both would die.
How else could Catholic morality view this case? One might invoke the rule of double effect. According to this rule, it would be morally permissible to proceed with the surgery provided there was one action with two effects, one good and one bad; that the action was not intrinsically evil; that one only intended the good effect and not the bad effect; that the bad effect was not the cause of the good effect; and that there was a proportionately grave reason for proceeding.
If the clergy consulted did analyze this case according to the rule of double effect, what might have given them pause is the difficulty of saying that there are really two effects following from the proposed action. In a very visceral sense, the separation of the two aortas simply is the killing of Mary as well as an attempt to save Jodie. Since death is normally defined as being pulseless and breathless, the good and bad effects in this case would be inseparable. Once Mary is no longer connected to Jodie, she automatically satisfies the definition of being dead. So under the rule of double effect, it still looks like an Aztec ritual.
But is this the proper rule to apply? I believe the case better fits other moral rules that have equally important standing in Catholic teaching. For centuries the church has taught that one need not use extraordinary means of treatment. In a real sense, examining the case from Mary’s point of view, Jodie is Mary’s life-supportnot just her ventilator, but her heart and circulation as well. The church teaches that Mary, and those who speak for her, have no moral obligation to continue heroic measures to keep Mary alive. The effort to do so imposes profound burdens on Mary, and profound burdens on Jodie as well. And the long-term benefits, according to the doctors, are negligible. Both are likely to die unless the separation takes place. Surely, this can be considered an extraordinary means of life support, and it would be morally permissible to discontinue this support.
Alternatively, one could examine the case from Jodie’s point of view. Catholic moralists would not demand that Jodie sacrifice herself in order to keep her sister alive for a few more months. Suppose you have fallen off the side of a cliff and are holding onto my arm. I am trying to keep you from falling to your death, but I begin to feel myself slipping and realize that both of us will die if I do not let go. Does the church forbid me to let go? Certainly not. Letting go would be a morally wrenching decision. Perhaps a hero would keep holding on, hoping that someone might come to our rescue before we both plunged to our deaths. But letting go under such circumstances would not be morally wrong. Jodie could let go of Mary without committing sin.
The Legal Decision
Supposing, however, that the parents had been given full and complete medical information and full and complete Catholic moral advice and had formed their consciences and had decided that they still would not change their mindsthat they still preferred to let nature take its course rather than make this painful choice. How should a just and tolerant society respond to their decision?
Courts in the United States have generally decided that parents cannot martyr their children for the sake of the religious beliefs the parents hold. Thus, an infected infant of parents who are Christian Scientists will be given antibiotics over the objections of the parents, and a hemorrhaging infant of parents who are Jehovah’s Witnesses will receive a blood transfusion over the objections of the parents. Further, the so-called Baby Jane Doe regulations now in place in the United States require that simple surgical procedures not be withheld from infants because of conditions such as mental retardation.
It would seem very hard, however, to conclude that in refusing to consent to an unprecedented and heroic operation that would benefit one child while leaving the other to die, the parents were guilty of child abuse. What they refused was not just a minor injection or a simple surgical procedure. They refused a major and complicated operation that posed significant risks even to Jodie. The whole procedure could be considered, in one sense, an extraordinary means of care that should be judged morally optional. In addition, since the retarded twin was doomed to die as a result of the surgery, it seems unreasonable to consider the refusal of that procedure to be an act of discrimination toward vulnerable children. It does not seem that the parents’ refusal ought to be construed as a completely irrational, outlandish, total imposition of the parents’ idiosyncratic religious views upon their children.
Yet this, in effect, is what the British court ruled. They took away the rights of the parents to make this decision and imposed upon them a fairly strict utilitarian calculus. I find this a dangerous precedent. The rights of the parents’ religious conscience have now been sacrificed upon the altar of medical science and social utilitarianism. Now, in Great Britain at least, not only must children be treated over their parents’ objections when the means are well within the bounds of what the average person would consider ordinary, but even when plenty of rational people might consider the means extraordinary. This case is far too ambiguous and open to far too many interpretations for the state to impose a solution over the objections of parents.
Care for the Future
Thus, as I see it, this case was consistently mishandled. It was riddled with bad moral advice and bad decision-making. It was plagued by medical arrogance, narrow pastoral advice and judicial bullying. The surgery has now taken place. Mary is dead, and Jodie is clinging to life. We are left to pray for the twins. And we can also pray for the parents. In odd ways, they too have become victims in this tragedy.
It is a truism that truth is often stranger than fiction. I could not have made up a more bizarre case to put on my medical students’ final exam in medical ethics or to contribute to an anthology. I sincerely hope that those who teach medical ethics can help our students learn to handle difficult cases like this one far more carefully in the future.