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Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope

Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, progn...

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Autores principales: Cortezzo, DonnaMaria E., Vawter-Lee, Marissa, Shoaib, Abdullah, Venkatesan, Charu
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10272582/
https://www.ncbi.nlm.nih.gov/pubmed/37334218
http://dx.doi.org/10.3389/fped.2023.1205543
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author Cortezzo, DonnaMaria E.
Vawter-Lee, Marissa
Shoaib, Abdullah
Venkatesan, Charu
author_facet Cortezzo, DonnaMaria E.
Vawter-Lee, Marissa
Shoaib, Abdullah
Venkatesan, Charu
author_sort Cortezzo, DonnaMaria E.
collection PubMed
description Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, prognostic uncertainty, and variability in neurodevelopmental outcomes. In the midst of uncertainty, families are challenged with preparing a care plan for their baby while simultaneously experiencing profound grief. The paradigms of perinatal palliative care can assist with the grieving process and help frame diagnostic testing and complex decision-making within the context of a family's spiritual, cultural, and social belief system. This ultimately leads to a shared decision-making process and value driven medical care. While perinatal palliative care programs have expanded, many families faced with such diagnoses never meet with a palliative care team prior to delivery. Moreover, there is significant variability in the availability of palliative care services throughout the country. Using an illustrative vignette of a patient with a prenatally diagnosed encephalocele, this review aims to provide a basic framework of perinatal palliative care for fetal neurology diagnoses that emphasizes 1) importance of clear, consistent, and transparent communication among all subspecialists and families, 2) creation of a palliative care birth plan, 3) importance of consistent care providers and longitudinal points of contact prenatally and post-delivery, 4) close communication between the prenatal and post-natal providers to allow for optimal continuity of care, and 5) recognize that information, care plans, and goals of care often evolve over time.
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spelling pubmed-102725822023-06-17 Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope Cortezzo, DonnaMaria E. Vawter-Lee, Marissa Shoaib, Abdullah Venkatesan, Charu Front Pediatr Pediatrics Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, prognostic uncertainty, and variability in neurodevelopmental outcomes. In the midst of uncertainty, families are challenged with preparing a care plan for their baby while simultaneously experiencing profound grief. The paradigms of perinatal palliative care can assist with the grieving process and help frame diagnostic testing and complex decision-making within the context of a family's spiritual, cultural, and social belief system. This ultimately leads to a shared decision-making process and value driven medical care. While perinatal palliative care programs have expanded, many families faced with such diagnoses never meet with a palliative care team prior to delivery. Moreover, there is significant variability in the availability of palliative care services throughout the country. Using an illustrative vignette of a patient with a prenatally diagnosed encephalocele, this review aims to provide a basic framework of perinatal palliative care for fetal neurology diagnoses that emphasizes 1) importance of clear, consistent, and transparent communication among all subspecialists and families, 2) creation of a palliative care birth plan, 3) importance of consistent care providers and longitudinal points of contact prenatally and post-delivery, 4) close communication between the prenatal and post-natal providers to allow for optimal continuity of care, and 5) recognize that information, care plans, and goals of care often evolve over time. Frontiers Media S.A. 2023-06-02 /pmc/articles/PMC10272582/ /pubmed/37334218 http://dx.doi.org/10.3389/fped.2023.1205543 Text en © 2023 Cortezzo, Vawter-Lee, Shoaib and Venkatesan. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) (https://creativecommons.org/licenses/by/4.0/) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Pediatrics
Cortezzo, DonnaMaria E.
Vawter-Lee, Marissa
Shoaib, Abdullah
Venkatesan, Charu
Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
title Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
title_full Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
title_fullStr Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
title_full_unstemmed Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
title_short Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
title_sort role of palliative care in fetal neurological consultations: guiding through uncertainty and hope
topic Pediatrics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10272582/
https://www.ncbi.nlm.nih.gov/pubmed/37334218
http://dx.doi.org/10.3389/fped.2023.1205543
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