Abstract 194 Clinical Bioethics Poster Symposium, Tuesday, 5/4

Life-sustaining intensive care is now available in many developing countries. Improvements in intensive care, morbidity and mortality statistics in developing countries must be explained to parents expecting the birth of a VLBW infant if they are to make informed decisions about resuscitation and life-support. Few data are available to evaluate the effectiveness of physician counseling and parent satisfaction with life-support decisions for VLBW infants in developing countries. Methods: We interviewed 28 parents who delivered 37 surviving VLBW infants (BW less than 1501 g) in 2 university hospitals in Taiwan in 1995-8. We asked mothers and/or fathers about their understanding of their infant's diagnoses, their perceptions of physician counseling, the decision-making process about life support, viewpoints on decision-making roles, and overall satisfaction with counseling and decision making. Interviews used a standardized tool in Chinese or English. Results: The 28 pregnancies were 24-36 wks gestation, predominantly inborn, and delivered by Cesarean (67%); 17 were singleton pregnancies. Birthweights ranged from 710-1500 gms. Of 37 surviving infants, 12 have major sequelae. After physician counseling regarding prognosis, 46% of parents expected sequelae in their infants; 76% perceived their infant's outcome better than expected. 43% of parents feared their infant would die after hospital discharge. Parents generally (61%) understood their infant's condition and prognosis. While 86% of parents reported physician counseling as helpful, nurses and doctors were cited equally as being the most helpful in counseling. Decisions about life-support were made by the mother (56%), the father (33%), or by grandparents (11%), although 81% of parents felt decisions had been made in concert with physicians. 43% of parents felt that physicians should make all life-support decisions. 82% felt that the family should consider physicians' recommendations regarding life-support, and 62% felt physicians should not take parents' wishes into consideration. 89% of parents reported overall satisfaction with counseling and decision-making. Suggested improvements in counseling practices were to increase physician counseling time (82%), nursing involvement (57%), use of simple language (71%), efforts to communicate prognosis (93%), and written information on diagnoses (93%). Conclusions: In this first study of physician-parent counseling about life-support for VLBW infants in Taiwan, parents generally felt they understood their infant's condition and prognosis and felt involved in decision making, despite sometimes deferring to the infant's grandparents and to physicians. Parents were satisfied with physician counseling and their decision-making role, despite the prevalence of major sequelae among survivors.

(Supported by UCSF Academic Senate Committee on Research & Pacific Rim Research Program, University of California)