Giving information for a life-threatening diagnosis. Parents' and oncologists' perceptions

Abstract

We surveyed pediatric oncologists throughout the United States and families of children with acute lymphocytic leukemia diagnosed between 1977 and 1980 at Children's Hospital National Medical Center, Washington, DC, to determine what information is perceived by both parents and physicians as essential to convey during the initial presentation of a life-threatening diagnosis. Both groups considered the following topics critical for discussion at the initial conference: diagnosis and prognosis of disease, explanation of disease process, additional tests needed to confirm and/or supplement the diagnosis, immediate therapeutic plan, and the physician's availability. Additionally, both parents and physicians, with minor variations, agreed about the order in which information about the disease should be conveyed. Although acute lymphocytic leukemia was used as a model, this study suggests guidelines that could be utilized to train residents and guide physicians in crisis-counseling techniques in the presentation to parents of a diagnosis of life-threatening illness in their child.