170 CONJOINED TWINS – WHO LIVES? WHO DIES? WHO DECIDES?

Abstract

We recently cared for a set of thoracopagus conjoined twins that shared a complex 6 chamber heart and liver. This was the 10th reported case and attracted international attention on medical and ethical issues. No conjoined twin with a shared heart has survived longer than 3 months. Our infants were ventilator dependent since birth. The father was a substance abuser with a criminal record. After careful review and ethical consultation, we recommended extubation and humane care without surgical separation. Despite our pleas, the parents insisted on surgery. At 7 weeks of age, successful separation was accomplished with the sacrifice of one twin. At 7 months of age, she remains ventilator dependent with a medical bill exceeding 1.5 million dollars. Baby Doe regulations mandated treatment for the most seriously ill newborn. Is the U.S. health system geared to rescue rather than prevention? Do we continue to investigate the uninvestigated and try to achieve the unachievable? In a society which values individual freedom, do parents have the right to choose for their children regardless of costs and suffering? Can this surgery be considered an amputation? Is the sacrifice of one twin justifiable homicide? Faced with many unimmunized children as well as an expanding AIDS and aging population, could this money have been spent more wisely? In the emerging era of health care reform, who will have the ultimate decision to ration care? Exceptional cases as this will have to be scrutinized closely. The patient's welfare and physicians quest for knowledge must complement and not oppose each other.