Withholding and withdrawing life sustaining treatment in neonatal intensive care: issues for the 1990s.

The transition from fetus to newborn is accompanied by dramatic physiological changes in the infant and by equally profound changes in emotional and moral attitudes, as well as changes in legal status among parents, caregivers, and society. The fetus becomes a baby, adults cross the border to parenthood, and medical responsibility shifts from the obstetrician to the paediatrician. These radical changes create challenges even when the baby is healthy. But when the baby is critically ill, and decisions need to be taken quickly, the medical complexities amplify the moral, legal, and psychological concerns. During the 1 970s, ethical deliberations about appropriate personal and societal responses to critically ill newborns led to widespread agreementl 2 (though not complete consensus3 4) that decisions should primarily reflect the interests of the infant. Interests of parents, other family members, or society at large were secondary. Infants' interests might best be served by continuing or foregoing treatment. If the decision was made to forego treatment there was no legal or moral difference between withholding and withdrawing treatment.5 Consensus on these issues helped secure medical treatment for newborns with disabling conditions, such as Down's syndrome or meningomyelocele. The 1980s brought a more restrictive view of ethical options which would have prohibited discontinuation of treatment unless infants were either comatose or the treatment considered 'futile' or 'inhumane'.6 These proposals were controversial, partly because concepts such as futility or inhumanity were vague and difficult to put into practice, and also because they went against the intuitions of parents and medical professionals.7 In the United States attempts by the Reagan administration to enforce these ethical guidelines created an atmosphere of distrust and fear.8 Careful study and comparison of different approaches to end of life care for neonates became difficult. At the same time advances in neonatology tended to magnify the dilemmas, especially with respect to extremely low birthweight infants, and created a new set of issues for which guidelines from the 1970s were difficult to apply.9 10 Furthermore, changes in societal attitudes and public policies regarding treatment decisions for dying adults created an increasing disparity in the way these decisions were handled for patients of different ages." While adults were gaining a 'right to die' that included the right to forego fluid and nutrition, the parents of neonates were losing the right to forego all but the most inefficacious treatments.