ELBW INFANTS MEDICAL PITFALLS

elbw infants medical pitfalls
As the number of ELBW infants increased in the postsurfactant era, so did questions regarding ethical, economic, and legal dilemmas surrounding the care of the infants. The United States is no longer alone in confronting neonatal-perinatal medical, legal, and ethical issues.

Management of anticipated delivery of an ELBW infant and subsequent care require the clinician to make decisions "in the moment of clinical truth." Pellegrino successfully argues that morally defensible difficult decisions must be made with available information and focus on "the morally right and good thing to do in this patient." Information regarding mortality, morbidity, and prognosis changes with time. Using the best information available, the clinician should manage the situation while taking into account the family's wishes and "what is in the best interest of the patient." When resolving bioethical dilemmas facing families and clinicians, the physician must address issues of futility, extension of the dying process, respect for the dignity of life, and pain and suffering. From a legal standpoint in the United States, government regulations exist based on child abuse laws enforced by individual states.

The question of what to do in the case of extreme prematurity (<23 wk) is a difficult one. Gestational age, which typically is based on the mother's recount of her last menstrual period, can differ from the actual gestational age by as much as 2 weeks, even when the latest ultrasound technology is used. Most centers do not have minimum birth weight criteria for resuscitation, and often a "trial of life" may be discussed with the parents before the birth so that the infant can be resuscitated and evaluated for viability after birth. Discussions about treatment or withdrawal of support are often necessary when the family and medical team agree that continuation of medical treatment is not in the infant's best interest. Naturally, these circumstances raise numerous ethical, moral, and legal issues and sometimes generate more questions than answers. Bioethics consultants and multidisciplinary ethics committees discuss such issues and arrive at recommendations for clinicians and families.

A 1987 California study calculated that the average cost per first-year survivor in infants in neonatal intensive care units with birth weights less than 750 g was $273,900; for those who weighed 750-999 g, average cost was $138,800. However, the overall percentage of costs for infants who died, usually within the first 3 days of life, was small. Hospital bills continue to rise as a result of advancing technology and may rise even higher if the child needs any type of rehabilitation or follow-up care. The infant's family undergoes severe emotional and financial stress with the birth of an extremely premature infant, and they often are confused, angry, and frustrated by resulting issues. In addition, society in general is affected by these infants, some of whom are significantly cognitively or physically impaired and require lifelong public assistance.

Since no single rule has been written regarding what to do in the impending birth of an extremely premature infant, both the obstetrician and the neonatologist must talk with the parents regarding what can be expected after delivery. The role of the medical team is (1) to fully inform the parents, based on the expected gestational age and any other pertinent prenatal data, of the most recent local and national statistics describing morbidity and mortality; (2) to describe procedures that may occur after the infant is delivered; and (3) to answer any questions the parents may have regarding the infant's care. Remember that opportunities to discuss management options will be available after the infant is born, allowing better evaluation of the infant and time for the family to fully comprehend the situation.