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
, Heather Krieger
, Anne Wei , David Kim , Oluyinka O. Olutoye and Darrell L. Cass
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.
Acknowledgments
We wish to thank all the patients who agreed to share their personal experiences.
Funding: This study was not funded by any external public or private funds.
References
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©2016 Walter de Gruyter GmbH, Berlin/Boston
Articles in the same Issue
- Frontmatter
- Editorial
- Prematurity
- Original articles - Prematurity
- Does progesterone administration in preterm labor influence Treg cells?
- Reliability of posterior-left atrium space index measurements during 20–24 weeks of gestation in structurally normal fetuses
- Intervention versus a conservative approach in the management of TRAP sequence: a systematic review
- Music-induced prolongation of heart rate corrected QT intervals from electrocardiogram recordings of healthy preterm pregnant women
- Music devices for the fetus? An evaluation of pregnancy music belts
- Communication about maternal-fetal surgery for myelomeningocele and congenital diaphragmatic hernia: preliminary findings with implications for informed consent and shared decision-making
- Randomized control trial comparing physiologic effects in preterm infants during treatment with nasal continuous positive airway pressure (NCPAP) generated by Bubble NCPAP and Ventilator NCPAP: a pilot study
- Clinical characteristics and factors associated with term and late preterm infants that do not respond to inhaled nitric oxide (iNO)
- Adipokine, adropin and endothelin-1 levels in intrauterine growth restricted neonates and their mothers
- Predicting neonatal respiratory morbidity by lamellar body count and gestational age
- Surfactant with and without bronchoalveolar lavage in an experimental model of meconium aspiration syndrome
- Academy’s Paper
- Neonates of mothers who have had kidney or liver transplantation
- Original articles - Obstetrics
- Arterio-venous differences in cord levels of catecholamines, glucose, lactate and blood gases
- Original articles - Newborn
- Genetic low nephron number hypertension is associated with altered expression of key components of the renin-angiotensin system during nephrogenesis
- Omega-3 fatty acids modulate neonatal cytokine response to endotoxin
- Short communication
- Reference values for the single deepest vertical pocket to assess the amniotic fluid volume in the second and third trimesters of pregnancy
- Congress Calendar
- Congress Calendar
Articles in the same Issue
- Frontmatter
- Editorial
- Prematurity
- Original articles - Prematurity
- Does progesterone administration in preterm labor influence Treg cells?
- Reliability of posterior-left atrium space index measurements during 20–24 weeks of gestation in structurally normal fetuses
- Intervention versus a conservative approach in the management of TRAP sequence: a systematic review
- Music-induced prolongation of heart rate corrected QT intervals from electrocardiogram recordings of healthy preterm pregnant women
- Music devices for the fetus? An evaluation of pregnancy music belts
- Communication about maternal-fetal surgery for myelomeningocele and congenital diaphragmatic hernia: preliminary findings with implications for informed consent and shared decision-making
- Randomized control trial comparing physiologic effects in preterm infants during treatment with nasal continuous positive airway pressure (NCPAP) generated by Bubble NCPAP and Ventilator NCPAP: a pilot study
- Clinical characteristics and factors associated with term and late preterm infants that do not respond to inhaled nitric oxide (iNO)
- Adipokine, adropin and endothelin-1 levels in intrauterine growth restricted neonates and their mothers
- Predicting neonatal respiratory morbidity by lamellar body count and gestational age
- Surfactant with and without bronchoalveolar lavage in an experimental model of meconium aspiration syndrome
- Academy’s Paper
- Neonates of mothers who have had kidney or liver transplantation
- Original articles - Obstetrics
- Arterio-venous differences in cord levels of catecholamines, glucose, lactate and blood gases
- Original articles - Newborn
- Genetic low nephron number hypertension is associated with altered expression of key components of the renin-angiotensin system during nephrogenesis
- Omega-3 fatty acids modulate neonatal cytokine response to endotoxin
- Short communication
- Reference values for the single deepest vertical pocket to assess the amniotic fluid volume in the second and third trimesters of pregnancy
- Congress Calendar
- Congress Calendar