Intensive care for very low birthweight infants in South Africa: a survey of physician attitudes, parent counseling and resuscitation practices.

Improving outcomes have promoted utilization of intensive care for premature infants in developing countries with available fiscal and technological resources. Physician counseling and decision-making have not been characterized where economic restrictions, governmental guidelines, and physician cultural attitudes may influence decisions about the appropriateness of neonatal intensive care. A cross-sectional survey of all neonatologists and pediatricians providing neonatal care in public and private hospitals in South Africa (n=394) was carried out. Physicians returned 93 surveys (24 per cent response rate). Frequency of counseling increased with increasing gestational age (GA) but was not universally provided at any GA. Morbidity and mortality were consistently discussed and fiscal considerations frequently discussed when antenatal counseling occurred. Resuscitation thresholds were 25-26 weeks and 665-685 g, and were higher in public than in private hospitals. Decisions to limit resuscitation were based more on expected outcome than on patients' wishes or economics. At 24-25 weeks, 91 per cent of physicians would not resuscitate despite parents' wishes; 93 per cent of physicians would resuscitate 28-29-week-old infants over parents' refusal. Parents expecting premature infants are not invariably counseled. In making life-support decisions, physicians consider infants' best interests and, less frequently, financial and emotional burdens. Thresholds for resuscitation and intensive care are higher in public hospitals, and higher than in developed countries. Physicians relegate parents to a passive role in life-support decisions.

Parental perception of neonatal intensive care in public sector hospitals in South Africa.

BACKGROUND: Little is known about parental experience and decision making with regard to premature infants requiring intensive care in developing countries. We undertook this study to characterise parents' experience of physician counselling and their role in making life-support decisions for very low-birth-weight (VLBW) (birth weight < 1 501 g) infants born in South Africa's public-sector neonatal intensive care units (NICUs). METHODS: Parents of surviving VLBW infants treated in three Johannesburg-area public hospitals and attending follow-up clinics in August 2001 were interviewed regarding their experience of perinatal counselling on outcomes (pain, survival, disability), perception of actual and optimal decision making, and satisfaction with NICU communication. RESULTS: Parents of 51 infants were interviewed. Seventy-five per cent of parents reported antenatal counselling by physicians on at least one perinatal topic (severe disability, pain, death, finances or religious/moral considerations). The majority of parents (> 60%) who received counselling thought that these topics had been discussed adequately. Most parents reported that doctors had the primary decision-making role, either without consulting them (41%) or after consulting them (37%). Joint decision making was rare (14%). Parents wanted more input in life-support decisions than they reported being given. CONCLUSION: Counselling is not consistently provided in public-sector hospitals in Johannesburg. Parents of premature infants want a larger share in NICU decision making than they currently experience. Most parents were satisfied with communication later during their infant's hospitalisation. South Africa presents a unique opportunity to study the use of advanced medical technologies in a nation with marked disparities in access to care.