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Locked-In Syndrome and Ethics Committee Deliberation

In “Permanently Locked-In Syndrome in the Neurologically Impaired Neonate,” Robert J. Echenberg provides a moving account of how an ethics committee can provide guidance in a difficult and disturbing clinical situation. Ethics committees are becoming the dominant model for dealing with these types of cases, and much has been written about their advantages and strengths. As ethics advisory committees become more widely used, however, we must also recognize their deficiencies, both in substance and process. From the substantive perspective, this case may illustrate some of the difficulties inherent in the ethics consultation process. The author states: “It was understood that the parents had a legal right to choose withdrawal of life support.” This begs the question, since the legal right assumed is predicated upon agreement (by the courts, ultimately) that the parents are truly acting in the child’s best interest. If the recommendation of the ethics committee had been to continue aggressive treatment, and if the case had gone to court, the outcome would not have been certain. (Consider how this case might be interpreted under the so-called Baby Doe regulations, which define the “withholding of medically indicated treatment” from newborns as child abuse. 1 ) The purpose of the ethics committee was, therefore, much more than just to “orchestrate” the baby’s death; the committee had a serious responsibility to evaluate the reasonableness of the parents’ request. The most pressing question for both the parents and caregivers in this case was to determine what was in this baby’s best interest. Most of the literature concerning best interest in noncompetent individuals concerns patients with severe cognitive impairments. This baby presumably had normal cognition, and if it were possible to sustain her physically, she would have had the potential for normal cognitive development. Ethics committees generally reflect our cultural bias toward the primacy of rationality and emotions in conferring quality on our lives.