Communication about maternal-fetal surgery for myelomeningocele and congenital diaphragmatic hernia: preliminary findings with implications for informed consent and shared decision-making.

OBJECTIVE

To examine the style and content of consultations for maternal-fetal surgery and draw conclusions about best practices for informed consent and shared decision-making.

STUDY

DESIGN

Qualitative study of 15 h-long consultations with women diagnosed with fetal myelomeningocele (MMC, n=11) or congenital diaphragmatic hernia (CDH, n=4) who were potential candidates for maternal-fetal surgery at a large children's hospital in the Southwestern US.

RESULTS

Major findings were that physicians tended to discuss the risks of fetal prognosis qualitatively more often than quantitatively (70% compared to 30%) and when mortality was a risk the "positive" (percentage survival) frame was always given rather than the morality frame. On average, families only talked 15% of the time and 45% of all their questions were about diagnostic or surgical procedure clarification.

CONCLUSION

Efforts should be made to minimize qualitative presentation of risk, which can be vague and confusing to patients. Both survival and mortality frames should be used to avoid biased decision-making. Communication and decision support tools that facilitate more shared decision-making between families and physicians are needed.