Caring and communicating. Observations on 19 Baby Doe patients

Under authority of Section 504 of the Rehabilitation Act of 1973, and stimulated by the well-publicized birth of a child with Down syndrome and esophageal atresia in 1982, the US Department of Health and Human Services (HHS) has actively responded to reports of alleged discriminatory failure to care for handicapped infants. Investigators and consultants from the (HHS) Office for Civil Rights have visited hospitals and interviewed various persons. Observations made and unofficial conclusions drawn by one participant in 19 such investigations relate not only to the care provided to these children but also to elements of communication with family, hospital staff, and others. Misunderstandings, faulty interpretations, and unrealistic expectations have resulted in bitter feelings, confusion, and frank hostility. These observations reveal an immediate need for reexamination of interpersonal communications in the context of caring for these children.