Heuser and colleagues' survey of obstetricians provides a valuable insight into the current management of severe fetal anomalies in the United States. Their survey reveals two striking features - that counselling for these anomalies is far from neutral, and that there is significant variability between clinicians in their approach to management. In this commentary I outline the reasons to be concerned about both of these. Directiveness in counselling arguably represents a form of paternalism, and the evident variability in practice is (...) likely the result of physician personal values. However, Heuser's survey may, by shining a light on practice, provide an important step towards a more consistent approach. (shrink)

Trisomy 13 and 18 are rare chromosomal abnormalities associated with high morbidity and mortality. Improved survival rates and increased prevalence of aggressive medical intervention have resulted in families and physicians holding different perspectives regarding the appropriate management of children with T 13/18. Families were invited for open-ended interviews regarding their experiences with the medical care of a child with T 13/18 over the past 5 years. Seven of 33 invited families were surveyed; those who had spent more than 40 days (...) in the hospital were most likely to accept the invitation. Grounded theory technique was used to analyze the interviews. This method elicited four key themes regarding family perspectives on children with T 13/18: they are unique and significant, they transform the lives of others, their families can feel overwhelmed and powerless in the medical setting, their families are motivated to “carry the torch” and tell their story. Families also emphasized ways in which Internet support groups can provide both positive and negative perspectives. The ensuing discussion explores the difficulties of parents and physicians in forecasting the impact that T 13/18 will have on families and emphasizes a narrative approach to elicit a map of the things that matter to them. The paper concludes that while over-reliance on dire prognostic data can alienate families, examining the voice, character and plot of patient stories can be a powerful way for physicians to foster shared decision-making with families. (shrink)