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Surgical Separation of Conjoined Twins: Jodie and Mary by Kathleen Minutaglio
Part One: The Ethics Involved in Surgical Separation of Conjoined Twins: Jodie and Mary
Introduction: In some cases of conjoined twins it is morally permissible to separate them in a surgical procedure but not in all cases. Each individual case must be looked at and decided upon. The overall goal, direction and ultimate outcome of care must show respect for the dignity of human life. These decisions are complicated by ethical problems involving patient privacy, the allocation of share organs and in some instances the necessity for one twin to die order to save the other. In Jodie and Mary’s case, surgical separation is morally permissible because Jodie, the stronger one, has a right to be released or separated from Mary, otherwise both would die within months.
Incidence and Development of Conjoined Twins: The incidence of conjoined twins occurs once in approximately 50,000 births. Approximately 60 per cent are stillborn. Conjoined twins are thought to be mono-zygotic, mono-chorionic twins of the same sex with identical chromosomal patterns. It is believed that the malformation occurs between the 13th and 15th days after fertilization. The inner mass of the cell is split into equal halves, each capable of forming a normal individual. In conjoined twins, complete separation of the inner cell mass within the chronic vesicle does not occur and non separated parts of the otherwise normal twins remain fused throughout development. (Hoyle, 1990a, p. 549)
Brief History: Conjoined twins were thought to be omens of the future or God’s punishment for man’s wickedness. As late as 1874, physicians who performed an autopsy referred to them as monsters. (Roffensperger, 1997a, p. 249) The most famous conjoined twins were Chang and Eng Bunker who were born in Siam in 1911. They became rich and famous in P.T. Barnum’s Circus where they were called "Siamese Twins". They lived to be 63 years old, both had married and between them had nineteen children. The earliest record of conjoined twins is that of the Biddenden maids born in 1100 in England. They said: "As we came together, we will also go together." (Raffensperger, 1997,b, p. 249) The first surgical separation was performed in the 15th century. Two sister who were joined at their heads lived until they were ten years old. One died and was separated from the other and although the operation was successful, the other twin also died. (Hayle, 1990b, p 550) Conjoined twins are classified by the most prominent site of connection, plus the Greek root pagos "that which is fixed". Such sites may include the thorax (thoracopagus, most common), abdomen (omphalopagus), pelvis (ischiopagus), sacrum (pyopagus) or skull (craniopagus). (Hoyle, 1990c, p. 549)
Jodie and Mary’s Condition: Conjoined twins Mary and Jodie are joined at their lower abdomens in a circular pelvis. Mary has an underdeveloped brain, described as "extremely primitive". She also has a heart and lungs that do not function and depends on Jodie for oxygenated blood. Mary who had been passive started opening one eye, kicking and sucking, although she couldn’t feed and may not have consciousness. Jodie, the stronger twin, is bright, alert and of normal intelligence. She supplies the circulation to Mary’s body. Jodie’s aorta sends blood across to Mary and her vena cava returns it.
Operation to Separate Twins: In an operation that was expected to take up to fifteen hours the twins would be separated at St. Mary’s Hospital in Manchester, England. The operation would start with the pelvic bones and then the spines where they were joined. Finally, the major blood vessels of the aorta and the vena cava would be divided and separated. It is at this point that Mary would be expected to die.
Prognosis: Without surgery on the conjoined twins it is estimated they would only live three to six months more. Mary is dependent on Jodie’s heart and lungs and if left unseparated will probably cause Jodie heart failure within six months. (McAllister, 2000a, p54) With surgery it is expected that Jodie would have a good quality of life and the possibility of a normal life expectancy. She might be able to go home two to three months after separation. Some reconstructive surgery will probably be need along with skin grafts. (Associate Press, 2000a, p. A6)
Parties Involved In the Case: The parents of Mary and Jodie identified only as Catholics from the Maltese island of Gozo in the Mediterranean opposed the operation for religious reasons. The moved to Manchester last May, three months before the birth because they wanted to save both twins. They told the court, "We could not possibly agree to any surgery being undertaken that will kill one of our daughters. We have faith in God, and we are quite happy for God’s will to decide what happens." (McAllister, 2000b, p54) The medical team of doctors and surgeons involved wanted to operate but would not until the legal position was made clear by the courts. Doctors felt surgery would allow Jodie to have a normal life while knowing Mary cannot survive once she is separated from Jodie’s aorta. Position of the court followed weeks of legal reviewing after Justice Johnson’s August 25th ruling allowing doctors to perform surgery. Three Appellate Court judges upheld the initial ruling allowing the surgery to take place. The court based it’s decision on an issue of self defense. The right of the stronger twin to be release from a sister who would eventually kill them both. (Associated Press, 2000b, p. 46)
Who Should Decide the Fate of Mary and Jodie? Under English law, parents wishes do not take precedence. Dr. Richard Nicholson, editor of the Bulletin of Medical Ethics in London said, "This case is really a complete conundrum. Both outcomes are right, and both are wrong. That’s why it seems right to pay more attention to the parents than the professionals, because they have to live with the consequences." (McAllister, 2000c, p54) And in an article by Susan Foley Pierce in Ethics for Nursing Practice she outlines a way of processing moral dilemmas by using a holistic process that involves not only reasoning based on scientific facts and norms but also consideration of the individual case and assessing well being of the infants. She stresses the importance of having a dialogue among all agents involved. And that decision making is done jointly with all parties being granted equal status: the competent parents’ autonomy, insight, and ultimate moral agency and the health professionals. This approach suggests that the knowledge of the right thing to do evolves from engaging in an open dialogue. Decision options are co-created by parents and health care professionals. And, that an effort must be made to see how this unique case relates to ethical theories and principles long defined as "good" and "right" actions. (Pierce, 1998a, p. 290) In order to make treatment decisions, the assessment of actual and potential pain and suffering versus actual and potential pleasure and satisfaction for the infants must be faced by both the parents and health professionals. Well-being is not static and must be revisited frequently as new treatment decisions are made. Based on a thorough assessment of actual and potential well-being, parents then have legal decision making authority regarding which course of care to pursue in the United States. This legal right was further endorsed as a moral standard by The Presidents’ Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research when they stated "parents should be the surrogates for a seriously ill newborn unless they are disqualified by decision making incapacity, an unresolvable disagreement between them, or their choice of a course of action that is clearly against the infant’s best interests." (Pierce, 1998b, p.293) When a decision is particularly difficult, team decisions, including social workers and chaplains along with the parents and health care personnel may help decide what is the best course to follow. It is the parents who have the ultimate legal right to choose a course of therapy for their child. Again, only with strong evidence of moral inadequacy (incompetence, maleficence) can that legal right be overturned. (Pierce, 1998c, p. 294) When a decision is particularly difficult, team decisions, including social workers and chaplains along with the parents and health care personnel may help decide what is the best course to follow. It is the parents who have the ultimate legal right to choose a course of therapy for their child. Again, only with strong evidence of moral inadequacy (incompetence, maleficence) can that legal right be overturned. (Pierce, 1998c, p.294)
Part Two: Is the act of separating the twins morally permissible?
Religious Views: Archbishop Karmic Murphy-O’Connor, head of the Roman Catholic Church in England and Wales, has said separating the twins would be "morally impermissible" because Mary had done "nothing which could justify killing her." In a submission to the appeals court, he wrote, "Respect for the natural authority of parents requires that the courts override the rights of parents only when there is clear evidence that they are acting contrary to what is strictly owing to their children. In this case the parents have simply adopted the only position they felt was consistent with their consciences and their love for both children." (MacLeod, 2000a, www.) Most other British churches have had little to say on the case, calling it a private matter. David Goldberg, senior rabbi at London’s Liberal Jewish Synagogue, says the appeals court judgement took "scant account of what constitutes personality, feelings or the spiritual essence of a human life." And, a spokesman for the East London Mosque said, "The general view of Islam is that life and death are in the hands of the Almighty alone." (MacLeod, 2000b, www.) Taking the religious points of view into consideration and struggling with the issue of whether the surgery would intentionally be the killing of Mary, in this particular case, the surgery should be permitted to take place. There aren’t any shared organs that would have to be taken away from Mary and given to Jodie, as in other cases of conjoined twins. The surgeon’s aim is to detach Mary in an effort to save Jodie. A passive by product of the surgery would be Mary’s death. Mary’s future would only worsen as low levels of oxygen further destroyed her brain. And, the strain on Jodie could cause both of them to die. In other cases of conjoined twins in the United States rabbis and Roman Catholics have decided in favor of operations to separate the twins. Despite traditional theology, Catholics have not opposed separation in specific instances. (Raffensperger, 1997c, p 251) An extensive study of the ethical considerations in the separation of conjoined twins was undertaken by a committee of 14 Protestant, Catholic and Jewish theologians. They agreed that surgery should be carried out prior to the development of separate personalities. They were also concerned about the quality of life of the twins and urged separation to protect the twins from ridicule and social isolation. (Raffensperger, 1997d, p. 251) Double-effect analysis, long a staple of Catholic medical ethics, is a framework for determining the distinction between direct and unacceptable versus acceptable killing. According to this framework an act of killing is indirect and morally acceptable only if it meets all four of the following conditions: 1) the act itself, considered independent of its effects, must be morally good or neutral, 2) only the good effect or effects of the act can be intended directly, 3) the bad effect of the act cannot be the means for achieving the good effect, and 4) the good effect or effects must outweigh the bad effect or effects. (Daugherty 1995a, p. 11) The separation of Mary and Jodie can be justified within the double-effect framework. The first condition, is the act itself morally neutral, was met. The surgery to separate the twins only involved separating the pelvic bones and two blood vessels, the aorta and vena cava. The twins didn’t share a major organ, like the heart, where the allocation of it would have to be decided. The second condition was met by intending only the good effect of preserving Jodie’s life. There was no direct intent to end Mary’s life. Mary’s death was not contained directly in the act itself, as it would have been had they shared one heart. Thirdly, the bad effect of the act wasn’t the means for achieving the good effect. Mary’s death was a by-product of their separation, not a necessary condition for saving Jodie’s life. Finally, the fourth condition required that the good effects must outweigh the bad. Clearly they do in the case of Jodie and Mary. The good effects of allowing Jodie a chance of a near normal life and the parents one healthy child outweighs the loss of both infants if left joined. Also, with each surgical procedure knowledge will be gained to help future infants survive other surgical procedures.
Moral theories and principles applied to Mary and Jodie’s case: The underlying moral agreement suggests that it is better to try and save one life than to passively allow two deaths to occur. The ethical situation of saving one twin rather than letting both die is less ambiguous when objective medical criteria indicate that one of the twins has a better chance of survival which is the case with Mary and Jodie. From the standpoint of human rights both twins have a right to life. And, in the case of Mary and Jodie, Mary’s life isn’t being directly denied her. The condition of her own health when separated from Jodie doesn’t allow her to survive. In the court ruling over Jodie and Mary, the ethical issue came down to an issue of self-defense - the right of the stronger twin to be released from a sister who would eventually kill them both. Lord Justice Alan Ward said in the ruling, "The sad fact is that Mary lives on borrowed time, all of it borrowed from her sister. She is incapable of independent existence." (Associated Press, 2000c, p. A6) The Utilitarian viewpoint would support the decision to surgically separate Jodie and Mary in their situation. The consequences of not operating would result in both infants only living a few more months whereas, separating them would give Jodie a chance at a normal life expectancy. The parents would also be rewarded with a healthy child instead of the loss of both babies. Deontologists would support the separation of Mary and Jodie because no direct harm would be meant towards Mary in the procedure. Doctors have a duty to try and save the life of one baby if not possible to save both. However, they wouldn’t support the separation of all conjoined twins. In some surgical procedures directly killing one twin to save the other is a direct action as in the case of twins with a shared heart. Virtue based ethics would also support the decision to separate Mary and Jodie. The motives of all parties involved appear to be trying to do the best thing in a difficult situation. The doctors have a moral duty to try and save one infant.
Conclusion: The issue of surgically separating conjoined twins can be a simple decision in one case to a very difficult decision in another case based on the physical problems the twins have. Again, each situation has to be looked at carefully and individually. It is important to share the decision making process with the parents and health care professionals involved. In Jodie and Mary’s case it is morally and ethically permissible to surgically separate them in order to allow Jodie to grow and develop. And, to allow her parents the opportunity of having a healthy child.
References
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