Parental Responsibility and the Infant Bioethics Committee

Baby Boy G was delivered prematurely at thirty-four weeks' gestation by cesarean section. He weighed four pounds (1800 grams) at birth and required a ventilator during his first five days of life due to immature lungs. At that time, he developed abdominal distention; X-rays revealed necrotizing enterocolitis, an inflammation of the bowel usually found in more seriously ill premature infants. On the following day, there was X-ray evidence of necrotic ("dead") bowel with signs of perforation. Emergency surgery was performed to remove a small portion of dead bowel and to place an ileostomy (the small bowel is exteriorized to bypass the operated area). The child did well postoperatively for three days when necrotic material was noted coming from the healing incision. When Baby G was returned to the operating room, the surgeon discovered that the entire intestine from stomach to rectum was dead. Certain there was no hope for the child, he elected to close die abdomen and not remove the necrotic material. He suggested that the baby be removed from respiratory assistance and allowed to die. Baby G's parents understood the serious nature of the illness and accepted that the child would likely die, but they did not wish the ventilator removed. The doctor stopped antibiotic treatment, and maintained simple intravenous hydration. Two weeks later, the child was still alive and no longer required the ventilator. He was taken back to the operating room in the hope that some viable bowel would be found, but reexploration confirmed that Baby G had no functional bowel and that there was no hope that he would ever take nutrition by mouth. Again it was predicted that the child would die due to the dead bowel. One week after this third surgical procedure, an Infant Bioethics Committee meeting was called to address the question whether Baby G's family should be offered the option of placement of a large, central intravenous line for total parenteral intravenous nutrition (TPN) for the child. Virtually all pediatric surgical literature recommends that TPN not be given to an infant who will never develop the capability of sustaining oral nutrition. This conclusion has been reached because of the natural history of the central intravenous catheters required to provide TPN. These lines become infected or nonfunctional on a regular basis and must be removed or replaced frequently. Most infants who have had such therapy over a long period of time have died within eighteen to twenty-four months due to infection or starvation when all available sites for placement of new catheters have been exhausted. Consequently, surgeons generally believe that it is in such children's best interests to die early in the neonatal period rather than suffer repeated hospitalizations until they ultimately die one to two years later. After considerable interdisciplinary reflection and discussion, our Infant Bioethics Committee developed several principles on which to base our recommendations,* a principle of parental responsibility for decision-making among them. Morally parents bear the principal decision-making responsibility for their infant. Thus they should serve as the child's surrogates-unless they choose a course of action that is clearly against the infant's best interests. Would it be clearly against Baby G's best interests to provide an intravenous line for nutrition; Would prolonging his life, even if he would be certain to develop multiple complications and die within a relatively short period of time, be so burdensome to Baby G that family choice in the matter should be precluded? Ethics committee members were unanimous in believing that the family should be offered the option of intravenous line placement, even though they also agreed that it was morally acceptable for the family to refuse iL In fact, many committee members were hopeful that the family would allow the child to die now, rather than inflict the potential for future pain and suffering on him. …