Anencephaly; the maternal experience of continuing with the pregnancy. Incompatible with life but not with love

O’Connell, Orla; Meaney, Sarah; O’Donoghue, Keelin

doi:10.1016/j.midw.2018.12.016

Cited by 22 publications

(66 citation statements)

References 57 publications

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“…Historically, many articles initially concentrated on candidates for perinatal palliative care. Thus, “lethal anomalies,” “congenital abnormalities” and “life-limiting fetal diagnoses” were the most commonly used keywords, and some articles even extended to certain diseases, such as trisomy 13, trisomy 18 and anencephaly ( 26 , 27 ). While there is a general consensus on lethal prenatal diagnoses, with advances in fetal and neonatal medicine, we must be wary of referring to some diseases as “lethal.” Future research on the treatment and prognosis of certain “lethal” diseases may provide more information that can help families make decisions.…”

Section: Discussionmentioning

confidence: 99%

Bibliometric Analysis of Global Research on Perinatal Palliative Care

et al. 2022

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ObjectivesThe aim of this study was to perform a bibliometric analysis of publications related to perinatal palliative care to identify scientific output and research trends at a global level.MethodsThe Web of Science Core Collection database was searched to retrieve publications focusing on perinatal palliative care published between 2001 and 2020. All retrieved publications were identified by title and abstract for their relevance to perinatal palliative care. These eligible publications were extracted from the following data: title, abstract, year, keywords, author, organization, journal and cited literature. VOSviewer software was used to conduct bibliographic coupling, coauthorship, and cooccurrence analyses and to detect publication trends in perinatal palliative care research.ResultsA total of 114 publications concerning perinatal palliative care were included. The annual number of publications has increased dramatically in recent years. The United States has made the largest contribution to this field with the majority of publications (68, 59.6%) and citations (1,091, 70.5%) and with close collaborations with researchers in Canada, Portugal and Australia. Wool C and her institution, York College of Pennsylvania, are the respectively, most prolific author and institution in this field, publishing 18 papers (15.8%). Journal of Palliative Medicine is the leading and main journal in this field. According to the cooccurrence network analysis, five main research topics were identified: the candidates for PPC, service models and forms, framework components, parental perspectives and satisfaction, and challenges and needs of health care providers.ConclusionThe findings of this bibliometric study illustrate the current state and global trends of perinatal palliative care for the past two decades, which will help researchers determine areas of research focus and explore new directions for future research in this field.

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Section: Discussionmentioning

confidence: 99%

Bibliometric Analysis of Global Research on Perinatal Palliative Care

et al. 2022

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“…Revista Latinoamericana de Bioética ■ Vol. 22 (1) En una revisión retrospectiva de casos (42 casos) con diagnóstico prenatal de anencefalia que dieron a luz después de las 24 semanas de gestación, durante el período comprendido entre 1990 y 2016 en un hospital de Qatar, Al-Obaidly et al (23) encontraron que la inducción del parto se realizó en el 55% (23/42) de ellos. Asimismo, se documentaron 40% (17/42) de nacimientos vivos, de los cuales la tasa de partos vaginales fue del 69% (29/42), y la tasa global de cesáreas fue del 31% (13/42).…”

Section: Discussionunclassified

Interrupción terapéutica del embarazo en casos de fetos anencefálicos y la objeción de conciencia

Mora

Ospina‐Henao²

2022

Rev. latinoam. bioet

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Si bien la interrupción terapéutica del embarazo en los casos de fetos anencefálicos ha sido ampliamente discutida, y se han llegado a conclusiones éticas que la justifican (si no existe contraindicación médica y se obtiene el consentimiento informado de la mujer), es importante reevaluar el tema. Por ello, se deben contrastar los principios bioéticos con sentencias judiciales de fenómenos jurídicos que están surgiendo en el mundo, y que pueden provocar cambios en los derechos sexuales y reproductivos. No obstante, esto no debe implicar un cambio en los argumentos bioéticos. Asimismo, debido al resurgimiento a nivel global de un conservadurismo moral, que propone un planteamiento en torno a la objeción de conciencia, se torna imperativo analizar desde la perspectiva bioética si la misma puede ser invocada en casos de interrupción terapéutica del embarazo. Para ello, se deberían ponderar los principios bioéticos y utilizar una bioética laica, pluralista y basada en ética de mínimos, la cual busque la dignidad de las personas que enfrentan una gestación de fetos anencefálicos. En ese sentido, la objeción de conciencia no debería utilizarse como instrumento para negar la atención a estas personas.

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“…When parents choose to continue a pregnancy with a life-limiting diagnosis, they have the unique experience of simultaneously grieving the future for which they have hoped, embracing the milestones of the pregnancy, and planning for how they wish to spend the time they will have with their baby. Many will experience a loss of identity and a sense of isolation (39). Parents often seek the support of their medical providers who have familiarity with what is initially foreign and often overwhelming to them (66).…”

Section: Role Of Perinatal Palliative Care-supported Advance Care Plamentioning

confidence: 99%

“…Additionally terms such as “lethal,” when used for life-limiting conditions, can convey a sense of finality to families, can leave them feeling hopeless, and may alter the decisions made for the remainder of the pregnancy and afterwards ( 36 ). Families have shared experiences of hearing insensitive or rushed remarks that cause lasting trauma ( 8 , 37 – 39 ). For example, phrases such as “incompatible with life” were found to be insensitive and unhelpful by parents ( 40 ).…”

Section: Parental Decision-making Experience With a Prenatally Identimentioning

confidence: 99%

Perinatal Palliative Care Birth Planning as Advance Care Planning

2020

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Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a baby that has yet to be born. With the support of the care team, families can begin to grieve, plan, and make meaningful memories during the duration of the pregnancy, the birth of their baby, and life of the child. Creating a palliative care birth plan, which expands beyond the traditional concept for delivery planning to include prenatal, perinatal, and neonatal care has become an important method for parents to process the diagnosis, for parents to document their wishes, and for members of the care team to communicate with the goal of supporting and enhancing the experience of the family. This articles reviews recent and relevant literature on the importance of birth planning and the role of perinatal palliative care when a life-limiting fetal diagnosis is made. Recent Findings: The process of birth planning is an important component of perinatal palliative care. Through this process, families can express their fears, values, hopes, and wishes. It also offers an opportunity for providers to communicate these wishes for the remainder of the pregnancy, the delivery, birth, and time afterwards. This has been demonstrated to decrease maternal stress and promote family centered care. Summary: Perinatal birth planning is an important component of perinatal palliative care when a fetus has a life-limiting diagnosis. The process of birth planning can be supportive and therapeutic as well as an important communication tool. With multiple practices and designs of perinatal palliative care programs, there are no standard tools even though important components have been identified. Ultimately, the strategies outlined here can be used as advance care planning tools.

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Anencephaly; the maternal experience of continuing with the pregnancy. Incompatible with life but not with love

Cited by 22 publications

References 57 publications

Bibliometric Analysis of Global Research on Perinatal Palliative Care

Bibliometric Analysis of Global Research on Perinatal Palliative Care

Interrupción terapéutica del embarazo en casos de fetos anencefálicos y la objeción de conciencia

Perinatal Palliative Care Birth Planning as Advance Care Planning

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