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

  • Jennifer S. Blumenthal-Barby EMAIL logo , Heather Krieger , Anne Wei , David Kim , Oluyinka O. Olutoye and Darrell L. Cass
Published/Copyright: April 14, 2015

Abstract

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.


Corresponding author: Jennifer S. Blumenthal-Barby, PhD, MA, Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, MS: BCM 420, Houston, TX, 77030, USA, Tel.: +1-713-798-7985, Fax: +1-713-798-3785, E-mail:

Acknowledgments

We wish to thank all the patients who agreed to share their personal experiences.

  1. Funding: This study was not funded by any external public or private funds.

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The authors stated that there are no conflicts of interest regarding the publication of this article.


Received: 2015-1-23
Accepted: 2015-3-15
Published Online: 2015-4-14
Published in Print: 2016-8-1

©2016 Walter de Gruyter GmbH, Berlin/Boston

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