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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

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Veröffentlicht/Copyright: 14. April 2015
Journal of Perinatal Medicine
Aus der Zeitschrift Journal of Perinatal Medicine Band 44 Heft 6

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.

Keywords: Ethics; fetal surgery; shared decision-making
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.

References

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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

Artikel in diesem Heft

  1. Frontmatter
  2. Editorial
  3. Prematurity
  4. Original articles - Prematurity
  5. Does progesterone administration in preterm labor influence Treg cells?
  6. Reliability of posterior-left atrium space index measurements during 20–24 weeks of gestation in structurally normal fetuses
  7. Intervention versus a conservative approach in the management of TRAP sequence: a systematic review
  8. Music-induced prolongation of heart rate corrected QT intervals from electrocardiogram recordings of healthy preterm pregnant women
  9. Music devices for the fetus? An evaluation of pregnancy music belts
  10. Communication about maternal-fetal surgery for myelomeningocele and congenital diaphragmatic hernia: preliminary findings with implications for informed consent and shared decision-making
  11. 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
  12. Clinical characteristics and factors associated with term and late preterm infants that do not respond to inhaled nitric oxide (iNO)
  13. Adipokine, adropin and endothelin-1 levels in intrauterine growth restricted neonates and their mothers
  14. Predicting neonatal respiratory morbidity by lamellar body count and gestational age
  15. Surfactant with and without bronchoalveolar lavage in an experimental model of meconium aspiration syndrome
  16. Academy’s Paper
  17. Neonates of mothers who have had kidney or liver transplantation
  18. Original articles - Obstetrics
  19. Arterio-venous differences in cord levels of catecholamines, glucose, lactate and blood gases
  20. Original articles - Newborn
  21. Genetic low nephron number hypertension is associated with altered expression of key components of the renin-angiotensin system during nephrogenesis
  22. Omega-3 fatty acids modulate neonatal cytokine response to endotoxin
  23. Short communication
  24. Reference values for the single deepest vertical pocket to assess the amniotic fluid volume in the second and third trimesters of pregnancy
  25. Congress Calendar
  26. Congress Calendar
https://doi.org/10.1515/jpm-2015-0039
Schlagwörter für diesen Artikel
Ethics; fetal surgery; shared decision-making

Artikel in diesem Heft

  1. Frontmatter
  2. Editorial
  3. Prematurity
  4. Original articles - Prematurity
  5. Does progesterone administration in preterm labor influence Treg cells?
  6. Reliability of posterior-left atrium space index measurements during 20–24 weeks of gestation in structurally normal fetuses
  7. Intervention versus a conservative approach in the management of TRAP sequence: a systematic review
  8. Music-induced prolongation of heart rate corrected QT intervals from electrocardiogram recordings of healthy preterm pregnant women
  9. Music devices for the fetus? An evaluation of pregnancy music belts
  10. Communication about maternal-fetal surgery for myelomeningocele and congenital diaphragmatic hernia: preliminary findings with implications for informed consent and shared decision-making
  11. 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
  12. Clinical characteristics and factors associated with term and late preterm infants that do not respond to inhaled nitric oxide (iNO)
  13. Adipokine, adropin and endothelin-1 levels in intrauterine growth restricted neonates and their mothers
  14. Predicting neonatal respiratory morbidity by lamellar body count and gestational age
  15. Surfactant with and without bronchoalveolar lavage in an experimental model of meconium aspiration syndrome
  16. Academy’s Paper
  17. Neonates of mothers who have had kidney or liver transplantation
  18. Original articles - Obstetrics
  19. Arterio-venous differences in cord levels of catecholamines, glucose, lactate and blood gases
  20. Original articles - Newborn
  21. Genetic low nephron number hypertension is associated with altered expression of key components of the renin-angiotensin system during nephrogenesis
  22. Omega-3 fatty acids modulate neonatal cytokine response to endotoxin
  23. Short communication
  24. Reference values for the single deepest vertical pocket to assess the amniotic fluid volume in the second and third trimesters of pregnancy
  25. Congress Calendar
  26. Congress Calendar
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