January 1994 XV/5
SEPARATING THE LAKEBERG TWINS: ETHICAL ISSUES
Amy and Angela Lakeberg were born on June 29, 1993, at Loyola University Medical Center in Maywood, Illinois, a suburb of Chicago. Before their birth, their parents learned that the twins were joined at the chest. Upon delivery, they learned that the twins shared a heart and liver. In the opinion of the neonatal physicians at Loyola, both would soon die if they were not separated. Moreover, even a they were separated, the chance of keeping the surviving twin alive was reckoned at "less than 1 percent." The parents, after being informed by the Loyola physicians of the situation, requested to have the twins separated, in hopes one would survive. Accordingly, a surgical team from Children's Hospital in Philadelphia, which had operated on several other sets of conjoined twins in recent years, agreed to accept the case. Surgery was performed in Philadelphia in August 1993. As a result of the effort to position a functioning heart in the body of one of the twins, Amy died and Angela still survives, albeit on a respirator. After delivery, and before and after the surgery to separate the twins, a discussion was carried on in the media concerning the ethical issues arising from the Lakeberg case. In this essay, we shall consider these issues.
It seems the first ethical issue in the Lakeberg case is whether or not to perform surgery. Moreover, it seems we have to evaluate the surgery both as therapy, and as a research project. Insofar as therapy is concerned, surgery should be performed if it is judged effective and does not impose a grave burden. Surgery is effective if it will enable the patient, in this case the twins, to pursue the purpose of life. That is, will the surgery enable the twins to think, love, relate to others and to pursue the goods of life which are associated with human fulfillment? Clearly, surgery alone will not help a person strive for the purpose of life, but surgery can establish a physiological basis for this endeavor. In answering this question concerning the effectiveness of the surgery, we are faced immediately with the realization that one of the twins will die as a result of the surgery. Thus, the surgery would not be effective insofar as the non-surviving twin was concerned. Because it was foreseen that Amy would die, some people condemned the surgery because they said it would involve killing Amy in order to save Angela. It seems on the other hand, that this is a classic case of the principle of double effect. The object of the moral action is to save Angela through surgery, and in the course of performing this action, because of the position of the shared organs, an unwanted effect occurs necessarily, namely the death of Amy. From the point of view of Amy's death then, it does not seem that the surgery involves a direct killing.
Is the surgery effective from the point of view of Angela? This is difficult to answer because her prognosis is so uncertain. The neonatologists at Loyola and the surgeons in Philadelphia did not offer much more hope of success than 1%. That means a 99% chance of failure. And we have no idea of what the possibility of "success" implied. Would it be considered a successful surgery if Angela merely survived after the surgery for a few weeks or months? Would the surgery be successful if Angela were to be respirator dependent for years to come and need to remain in an institution? How would neurological deficit be reckoned insofar as success in concerned? Though it is difficult to determine the meaning of "success" insofar as the surgery is concerned, given the uncertainty of Angela's survival for any length of time, and given the debilitated condition which would probably ensue after surgery, it seems a bit optimistic to say that the surgery had a I% chance of success.
Even if some would judge the surgery to be potentially effective for Angela, it must also be evaluated insofar as the burden it imposes is concerned. The burden of any medical therapy must be considered from the point of view of the patient, and also from the point of view of the family and society. When we consider the burden from the point of view of Angela, we consider not only the burden of the surgery, but also the burden that will be imposed upon her in the future as a result of the surgery. In regard to the surgery itself, a doesn't seem to have imposed an excessive burden upon Angela. But did the surgery impose an excessive burden insofar as Angela's future life is concerned? This is difficult to decide because of the vagueness of the prognosis and the uncertainty of her function and survival. Even if the surgery allows Angela to survive, will it be a beneficial survival, or a burdensome survival? At the time of the surgery, no one could say. But how many ventures would a prudent person pursue, if the hope for success were less than 1%? Can the burden be deemed excessive insofar as !he parents are concerned? Reitha and Ken seemed willing to assume the burden associated with caring for Angela. Hence it would be difficult to assert excessive burden insofar as the parents are concerned. Insofar as society is concerned, the main objection to the surgery concerned the money that would be spent upon the care of the twins in the tertiary care facilities in Maywood and Philadelphia. The statement was often made, "Couldn't that money be put to better use; for example, by devoting it to pre-natal care?" The fact is, that if the money were not devoted to the care of the twins, it would not be devoted to pre-natal care. Our society has a very convoluted method of funding health care for catastrophic cases like the Lakebergs. Funding of health care results from an amalgam of public, private, and charitable sources, which are unpredictable, but which often provide the necessary funds. While this does not seem to be the optimal method of funding health care, nonetheless, it is the method that exists in our society at present. Thus, it doesn't seem that physicians and hospital administrators who cared for the Lakeberg twins can be faulted for a misuse of resources once they decided to perform the surgery. The surgeon in Philadelphia seems to be justified in saying: "if someone is going to ration health care because of money, it is not going to be us." In the future, society may wish to address the economic implications of catastrophic treatment in a more reasonable manner, but at present, surgeons do not have the responsibility of allocating funds for catastrophic cases.
If the surgery were deemed ineffective or excessively burdensome as a medical procedure, could it be justified as a research project? Research, in the strict sense of the term, does not aim at healing or curing, but rather at acquiring new knowledge for the good of humanity. Of course, research is often combined with therapy, and then the overall project does have a healing or curing purpose. But in the strict sense, research seeks to gain knowledge that will benefit people in the future. One can accept serious risk of harm for oneself and thus volunteer for research projects in the strict sense of the term. But the ethical validity of proxy consent does not allow one person to put another person at risk of serious harm unless there is hope of therapeutic benefit. When the ethical issues of the Lakeberg case were discussed, some expressed the thought that the surgery was justified because it might provide knowledge for the future. But the risk to the twins was too great, especially to Amy, to justify the surgery under the title of research. The history of research upon humans, from Auschwitz to Tuskeegee, is replete with examples of both subjects and researchers being dehumanized as a result of research without informed consent.
Finally, who has the ethical right and responsibility to make decisions concerning the medical care of the Lakeberg twins? The first response to this question might be "the parents" because the children are not able to offer consent for themselves. However, this response is a bit shortsighted because when making any type of reasonable decision parents will require medical information from the physicians involved in the case. Thus, informed consent, especially in the case of infants, is a collaborative decision. The physicians must make a decision whether or not the surgery would seem to be effective and offer this information to the parents. Insofar as ethical medicine is concerned, the physicians have the right and often the obligation to declare that a particular therapy is futile, and that they do not offer that particular therapy as an option. Unfortunately, in the United States at this time, physicians seldom make a declaration that a particular therapy is futile if the parents of proxies of incapacitated patients vehemently request such therapy. The mentality of the physicians in the Lakeberg case was evidenced by a surgeon in Philadelphia who stated that the main reason for performing the surgery was the Lakeberg's wishes. "We take the position that the parents have the right to choose for their children." This is true, in most cases, but not if the surgery is ineffective in the minds of the surgeons. A more collaborative decision might have yielded a different decision in the Lakeberg case.
The most disconcerting aspect of the Lakeberg case is the realization that ethical decisions often must be made with incomplete and insufficient information. When this happens, there is no moral mandate to pursue the course of action which might prolong life, especially if there is only insignificant hope of success. As Daniel Callahan remarks: "The yoking of sanctity of life and the technological imperative has led to the common conclusion that, when in doubt, we should treat." But the ethical reality is that actions need not be performed if the hope of success is very remote. Hence, there is no ethical mandate to do whatever is possible, rather there is a mandate to do what is reasonable. With this in mind, not because millions of dollars were expended, it seems the decisions made to separate the Lakeberg twins may be called into question.
Kevin O'Rourke, OP
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