Decision influences and aftermath: parents, stillbirth and autopsy

Abstract

BACKGROUND: Stillbirth, among the most distressing experiences an adult may face, is also a time when parents must decide whether an autopsy or other post-mortem examinations will be performed on their infant. Autopsies can reveal information that might help explain stillbirth, yet little is known about how people make this difficult decision. OBJECTIVES: This study examines the influences on decisions about autopsy after stillbirth among Australian parents. DESIGN: The study involved secondary analysis of transcripts of three focus groups using qualitative content analysis. PARTICIPANTS AND SETTING: Seventeen parents of 14 stillborn babies participated in consultations around the revision of a perinatal mortality audit guideline. RESULTS: Parents shared the decision making. Four decision drivers were identified: parents' preparedness or readiness to make decisions; parental responsibility; concern for possible consequences of an autopsy and the role of health professionals. Each decision driver involved reasons both for and against autopsy. Two decision aftermath were also present: some parents who agreed to an autopsy were dissatisfied with the way the autopsy results were given to them and some parents who did not have an autopsy for their infant expressed some form of regret or uncertainty about the choice they made. CONCLUSIONS: To make decisions about autopsy after stillbirth, parents need factual information about autopsy procedures, recognition that there might be fear of blame, an environment of trust, and health services and professionals prepared and skilled for difficult conversations.