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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. However, they believed that since it was unclear what would be in Baby G's best interests the family should make the decision.

The committee's recommendation included a clear statement that if the family wished the initial intravenous catheter to be placed, they should be informed that each time that a complication occurred in the future, they would again have the opportunity to judge the relative benefits and burdens of continued treatment and new interventions. The committee did not assess the child's developmental capability in making its recommendation, but focused solely on the benefit of the proposed intervention as it related to the potential for increased suffering and the inevitable death of the child.

Baby G's parents opted for a central intravenous line for nutrition. Once placed, the line developed all of the expected problems and had to be replaced seven times over the seventeen-month life of the child. The infant was able to be home for about half of his life, and even traveled with the family to Disney World with his intravenous pump attached throughout the trip. The baby showed some physical and mental development during the first year of life, but was never able to do much more than recognize his parents and play simple "peek-a-boo" games with his caregivers. Baby G ultimately died of an infection while undergoing intensive treatment. To the end, his parents wanted him to receive antibiotics, even when they were aware that there were no additional sites for placement of the central intravenous line.

Baby G's parents report that they are pleased he was with them for seventeen months and that his suffering was far outweighed by the pleasure they perceived he experienced and the pleasure they had in caring for him.

I believe the goal of an infant bioethics committee is to assure that medical, psychological, and ethical information and insights are before those responsible for the care and decisionmaking in the neonatal unit. With the neonate as the focus, the best interests standard ought to be applied. When what is clearly in the best interests of the infant cannot be determined, the procedural approach that maximizes parental involvement ought to be pursued. As a check and balance on the system, the infant bioethics committee can assure that all the necessary facts have been generated and that the appropriate process has taken place. The committee will never be able to assure the optimal outcome, but only that the process of decisionmaking has included thoughtful deliberation.

When should an ethics committee recommend not offering a known treatment to a family or withholding a treatment from an infant over the objection of the parents? If treatment is futile in that it will offer no potential benefit to the infant and will only impose pain and suffering on die child, then to offer it is clearly against his or her best interests. I believe that this sort of intervention should not be offered to a family and, if requested, should not be provided.

Physicians and nurses, in fulfilling their obligations to infants, must refrain from imposing burdens on these vulnerable patients for no potential benefit. However, when benefit is possible, even though slim, or when what would be in the best interests of the child is unclear, it is mandatory to offer such treatments to families and to aid them in a careful analysis of their choices.
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Author:Fleischman, Alan R.
Publication:The Hastings Center Report
Date:Mar 1, 1990
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