Physicians and the communication of bad news : parent experiences of being informed of their child's cleft lip and/or palate

Physicians often are called on to deliver "bad news" in the form of a diagnosis with unhappy implications. Few guidelines exist for practitioners who wish to meet patient and family expectations for clear and caring communication. To develop recommendations for physicians, this study was undertaken to document how biologic parents of children born with a specific, non-life-threatening birth defect perceive the encounter with a physician during which they were informed of their children's diagnosis. The study also examines parental preferences for how this communication might best be managed and compares those with parent reports of their actual experiences. Biologic parents of children born with cleft lip and/or palate (n = 100) were studied with a self-administered questionnaire about the diagnostic encounter in which they rated theoretically derived dimensions of physician communication. Their experiences, as well as their preferences for communication in a hypothetical case, were compared through the use of ratings and open-ended qualitative narratives. Parents learned the diagnosis at birth (90%) from a physician (96%). Many report positive experiences, but there are significant differences between what parents experienced and what they desire in the informative interview. Parents wanted more opportunity to talk and to show their feelings and wanted the physician to try harder to make them feel better. As compared with their experiences, parents indicated a desire to have more information and more of a discussion about the possibility of mental retardation. They wanted the physician to show more caring and confidence, and wanted more referral to other parents, than they had experienced. Dimensions of physician behavior were more positively perceived by parents who were informed by a physician whom they felt they knew well. It is possible for physicians to effectively deliver bad news, such as the diagnosis of a birth defect, to parents. This study suggests specific communicative and educational approaches that are likely to improve parental satisfaction with such physician communications.