Background: African-American adults are more likely than white adults to desire the continuation of life-sustaining medical treatment (LSMT) at the end of life. No studies have examined racial differences in parental end-of-life decisions for neonates.
Objective: To collect preliminary data to determine whether differences exist in the choices made by parents of African-American and white infants when a physician has recommended withholding or withdrawing LSMT from their infant to develop hypotheses for future work.
Design/methods: A retrospective chart review of African-American and white infants who died in an urban neonatal intensive care unit (NICU) over a two-year period. Charts were abstracted for demographics, cause of death, and documentation of meetings where the physician recommended withholding or withdrawing LSMT.
Results: Thirty-eight infant charts met study criteria (58% African-American, 42% white). Documentation of physician recommendations to limit LSMT was present in 61% of charts. Approached families of white infants agreed to limit LSMT 80% of the time compared to 62% of the families of African-American infants.
Conclusions: In this pilot study, parents of African-American and white infants appeared to make different end-of-life choices for their children. A larger study is needed to confirm these findings and further explore contributing factors such as mistrust, religiosity, and perceived discrimination.