Survey of physicians' approach to severe fetal anomalies

Heuser, Cara; Eller, Alexandra; Byrne, Janice L. B.

doi:10.1136/medethics-2011-100340

Cited by 49 publications

(66 citation statements)

References 17 publications

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“…A recent survey suggests obstetricians often accommodate these requests. 3 For both obstetric and perinatal decisions, the parents must work with doctors to assess the potential benefits and burdens of any interventions. They have the right to make decisions unless the doctors believe that their decisions are contrary to the child' s best interest.…”

Section: The Fetal Medicine Team's Responsementioning

confidence: 99%

Trisomy 18 and Complex Congenital Heart Disease: Seeking the Threshold Benefit

et al. 2013

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A prenatal diagnosis of ductal-dependent, complex congenital heart disease was made in a fetus with trisomy 18. The parents requested that the genetic diagnosis be excluded from all medical and surgical decision-making and that all life-prolonging therapies be made available to their infant. There was conflict among the medical team about what threshold of neonatal benefit could outweigh maternal and neonatal treatment burdens. A prenatal ethics consultation was requested.

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Section: The Fetal Medicine Team's Responsementioning

confidence: 99%

Trisomy 18 and Complex Congenital Heart Disease: Seeking the Threshold Benefit

et al. 2013

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“…The Conselho Federal de Medicina (Federal Council of Medicine) (CFM) defends the autonomy of the mother in the decision making process regarding the maintenance or interruption of pregnancy in cases of anencephaly, and demands impartiality of the doctor to not influence the mother in either direction 10 . However, medical studies reveal that doctors face difficulties in keeping neutral upon advising pregnant women 11 .…”

Section: Medical and Legal Authorization For Therapeutically Induced mentioning

confidence: 99%

“…On the other hand, the practice of "complete intervention" in favor of the fetus -which includes Cesarean section, fetal monitoring, neonatal resuscitation -, as per the mother's request, was discouraged by most obstetricians and, therefore, remains controversial. For the case of uniformly lethal anomalies, such as anencephaly, 29% did not fulfill the mother's request for complete obstetric intervention in favor of the fetus 11 .…”

Section: The Influence Of the Doctor In The Therapeutically Induced Cmentioning

confidence: 99%

“…Given the clearance for therapeutically induced childbirth in anencephaly cases without the need for legal authorization 9 , further studies are necessary to evaluate how the management of pregnancies with lethal anomalies is accomplished in practice 10 , since obstetricians have difficulties in giving non-directive counseling to the mothers 11 .…”

Section: Final Considerationsmentioning

confidence: 99%

“…Another study 11 evaluated the medical approach in face of serious fetal anomalies in the United States. It concluded that an objective evaluation of the strategies used by obstetricians is necessary for the management of pregnancy in cases of lethal anomalies such as anencephaly, considering the lack of existence of well-defined care standards for this condition.…”

Section: The Influence Of the Doctor In The Therapeutically Induced Cmentioning

confidence: 99%

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Liberação médico-jurídica da antecipação terapêutica do parto em anencefalia: implicações éticas

et al. 2016

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Anencephaly is a congenital anomaly in which the neural tube closes improperly, affecting the formation of the cranial vault and much of the brain. Therefore, in anencephaly, the hypothesis of fetal unfeasibility is considered. In cases of unfeasible extra-uterine fetal life or maternal health risk, it is possible to resort to the therapeutic induction of childbirth. This article discusses the ethical implications concerning the authorization of therapeutic induction of childbirth in case of anencephaly, such as: the physician's influence on the patient's decision making; failure to implement the methods of preventing this anomaly; legal differences between abortion and therapeutic induction of childbirth. The latter is a novelty within the legal field in Brazil, since the Penal Code criminalizes abortion, except in cases of life-threatening pregnancy or pregnancy resulting from rape. Keywords: Abortion. Anencephaly. Folic acid. Bioethics. Legislation. ResumoLiberação médico-jurídica da antecipação terapêutica do parto em anencefalia: implicações éticas Anencefalia é anomalia congênita na qual o tubo neural fecha-se incorretamente, comprometendo a formação da abóbada craniana e de grande parte do encéfalo. Por isso considera-se, em anencefalia, a hipótese de inviabilidade fetal. Em casos de vida fetal extrauterina inviável ou saúde materna em risco, há possibilidade de recorrer-se à antecipação terapêutica do parto. Este artigo aborda as implicações éticas acerca da liberação desse procedimento diante do quadro clínico ora debatido. Entre essas implicações estão: influência do mé-dico na tomada de decisão da paciente; falhas na implementação dos métodos de prevenção dessa anomalia; diferenças legais entre abortamento e antecipação terapêutica do parto em anencefalia. Palavras-chave: Aborto. Anencefalia. Ácido fólico. Bioética. Legislação. ResumenEnfoque médico y legal a la liberación de la anticipación terapéutica del parto en la anencefalia: implicaciones éticas La anencefalia es una anomalía congénita en la que el tubo neural se cierra incorrectamente, poniendo en peligro la formación de la bóveda craneal y de gran parte del cerebro. Por lo tanto, en la anencefalia se considera la posibilidad de inviabilidad fetal. Se sabe que en los casos de inviabilidad de la vida fetal extrauterina o riesgo a la salud materna, es legítimamente posible interrumpir el embarazo. Este artículo discute las implicaciones éticas relativas a la liberación de la anticipación terapéutica del parto en casos de anencefalia, tales como la influencia médica sobre la toma de decisiones del paciente; la falta de aplicación de los métodos de prevención de esta anomalía; las diferencias legales entre aborto y anticipación terapéutica del parto en anancefalia, esto como una novedad en el sistema jurídico brasileño, ya que el Código Penal penaliza el aborto salvo en caso de amenaza de la vida de la embarazada o gestación resultante de estupro.

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Using Patient-Centered Care After a Prenatal Diagnosis of Trisomy 18 or Trisomy 13

et al. 2017

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atient satisfaction with health care is an increasingly significant concern. In 2001, the Institute of Medicine introduced a comprehensive strategy to improve health care in the United States. A key aim of this proposal is patient-centered care (PCC), defined as "providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions." 1(p6) Based on a comprehensive analysis of patient focus group data, 4 core concepts (dignity and respect, information sharing, participation, and collaboration) have been established to define quality in health care delivery (Table ). 2 These concepts harmonize with the clinical ethical principles of beneficence, nonmaleficence, justice, and respect for autonomy. 3 Previous reports suggest dissatisfaction among patient families and growing debate among clinicians regarding care after trisomy 18 (T18) or trisomy 13 (T13) diagnosis. 4,5 Our objective was to use PCC concepts to develop a framework that more fully evaluates sources of dissatisfaction and debate regarding shared decision making and clinical care of infants with T18 and T13. We outline key recommendations for a balanced approach to joint decision making regarding care that has application in other areas of challenging patient treatment.

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Survey of physicians' approach to severe fetal anomalies

Cited by 49 publications

References 17 publications

Trisomy 18 and Complex Congenital Heart Disease: Seeking the Threshold Benefit

Trisomy 18 and Complex Congenital Heart Disease: Seeking the Threshold Benefit

Liberação médico-jurídica da antecipação terapêutica do parto em anencefalia: implicações éticas

Using Patient-Centered Care After a Prenatal Diagnosis of Trisomy 18 or Trisomy 13

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