Skip over navigation

Journal Issue: Low Birth Weight Volume 5 Number 1 Spring 1995

Evidence-Based Ethics and the Care of Premature Infants
Jon Tyson

Practices and Policies in the United States and Canada

Some neonatologists initiate neonatal intensive care for virtually all seriously ill, malformed, or immature infants, including infants weighing less than 500 grams (1 pound, 2 ounces) at birth or delivered before 24 weeks after the mother's last menstrual period (24 weeks gestational age). Except for infants with extremely devastating congenital anomalies (for example, anencephaly), these neonatologists believe that prognosis cannot be adequately assessed at birth and that decisions made in the delivery room to forego neonatal intensive care result in unnecessary deaths and handicaps. Parents have little influence over the decision to begin neonatal intensive care, although they are involved in any decision to discontinue neonatal intensive care. However, these neonatologists are resistant to discontinuing neonatal intensive care.4 While some will agree to discontinue neonatal intensive care if the infant develops a large hemorrhage in the brain, others consider it acceptable only when death is clearly imminent.

In other centers, neonatal intensive care is used more selectively and is not initiated when the neonatologist judges that it would not be beneficial. In this situation, infants are given "comfort care"—which includes a warm environment, gentle handling, and contact with the parents as they desire—and allowed to die without administration of any painful procedures. If neonatal intensive care is initiated, the development of major complications is likely to prompt consideration of whether neonatal intensive care should be continued. Depending on the circumstances, the parents may or may not be involved in deciding to forego or initiate neonatal intensive care although they are involved in any decision to withdraw it.

In centers that use neonatal intensive care selectively, birth weight is often the primary criterion in deciding whether to initiate this care. Currently, neonatal intensive care is not routinely administered in many units to infants whose birth weight is less than 500 grams (1 pound, 2 ounces). However, for many years, the minimum birth weight at which neonatal intensive care was routinely administered was as high as 800 grams (1 pound, 11 ounces) in neonatal units in the United States. (In this article, the term "extremely premature infants" is used to refer to infants who weigh 800 grams or less—infants who, if they survive, usually are treated with a respirator for more than a month and remain in the hospital more than 100 days.5)

Gestational age may also be considered in decisions to administer or forego neonatal intensive care, particularly when gestational age is known with certainty and when treatment is planned prior to birth. Allen and colleagues have recently recommended starting neonatal intensive care for infants of 25 weeks gestational age or greater but not for infants of 22 weeks or less.6 At 23 to 24 weeks gestational age, they recommend that treatment be decided in a joint decision with the parents. These recommendations are similar to those of other U.S. and Canadian groups.7

In a recent survey of neonatologists,8 65% of respondents indicated that they would consider parental wishes in deciding whether to initiate neonatal intensive care for an infant born at 23 to 24 weeks. If an infant born at 23 weeks gestational age deteriorated despite maximal support in the neonatal intensive care unit, 55% of the neonatologists said they would involve the parents in decision-making and actively encourage a decision to discontinue the respirator for these infants. This percentage decreased to 48% if the infant had been born at 24 weeks and 32% if the infant had been born at 25 weeks. In a different survey,9 94% of respondents recommended aggressive treatment at birth for a 625-gram infant delivered at 25 weeks; however, 53% indicated they would limit treatment if the infant developed a large intracranial hemorrhage.

Unfortunately, there is little information documenting actual practice. The proportion of infants with birth weights of 800 grams or less who received neonatal intensive care within the 12 centers of the Neonatal Research Network sponsored by the National Institutes of Child Health and Human Development has been reported.

Among infants of the same birth weight, those with the most advanced gestational age are most mature, least likely to die, and thus, most likely to benefit from neonatal intensive care. Those who are small for their gestational age (have a birth weight below the 10th percentile) fare better than infants of the same birth weight who are appropriate for their gestational age (have a birth weight in the 10th through the 90th percentile for gestational age) or large for their gestational age (have a birth weight above the 90th percentile).

Neonatal intensive care was given to approximately 55% of the smallest and most immature infants (appropriate-for-gestational-age or large-for- gestational-age infants whose birth weight was 501 to 600 grams [1 pound, 2 ounces to 1 pound, 5 ounces]). Neonatal intensive care was given to more than 80% of all remaining infants (small-for-gestational-age infants with birth weights between 501 and 800 grams [1 pound, 2 ounces and 1 pound, 11 ounces] and appropriate-for-gestational-age or large-for-gestational-age infants with birth weights between 601 and 800 grams [1 pound, 5 ounces and 1 pound, 11 ounces]).5,10

However, there was considerable variation between centers. Little information about withdrawal of neonatal intensive care and the involvement of parents or ethics committees in treatment decisions is available from these or other centers.