Attitudes of parents and health care professionals toward active treatment of extremely premature infants

Abstract

Objectives: To compare the attitudes of neonatologists, neonatal nurses, the parents of extremely low birth weight (ELBW) children, and the parents of normal birth weight children toward saving infants of borderline viability and who should be involved in the decision-making process and to compare physicians' and nurses' estimates of the proportion of infants who are born at various gestational ages with regard to survival, morbidity, and treatment.

Methods: A questionnaire was given to 169 parents of ELBW children and 123 parents of term children, who were part of a longitudinal study of the outcome of ELBW infants. A similar questionnaire was completed by 98 Canadian neonatologists and 99 neonatal nurses.

Results: Physicians tended to be more optimistic than nurses regarding the probability of survival and freedom from serious disabilities and would recommend to parents life-saving interventions for their child at earlier gestational ages. A significant majority of parents believed that attempts should be made to save all infants, irrespective of condition or weight at birth, compared with only 6% of health professionals who endorsed this. In contrast to parents, health professionals believed that economic costs to society should be a factor in deciding whether to save an ELBW infant. However, health professionals did not believe that the economic status of the parents should be a factor, although the stress of raising an infant with disabilities should be. Most respondents believed that the parents and physicians should make the final decision but that other bodies, such as ethics committees or the courts, should not.

Conclusion: Health care professionals must recognize that their attitudes toward saving ELBW infants differ from those of parents. Parents, whether of term or extremely premature children, are more in favor of intervening to save the infant irrespective of its weight or condition at birth than are professionals. It therefore is imperative that there be joint decision making, combining the knowledge of the physician with the wishes of the parents.