Decision-Making after Ultrasound Diagnosis of Fetal Abnormality

Bijma, Hilmar H.; Heide, Agnes van der; Wildschut, H. I. J.

doi:10.1016/s0968-8080(08)31372-x

Cited by 59 publications

(24 citation statements)

References 41 publications

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“…Literature on end-of-life practices prior to stillbirth distinguishes between non-aggressive obstetric management and TOP [ 9 , 10 , 23 ]. Non-aggressive obstetric management (or abstinence from treatment) is the denial of interventions which are needed to sustain the life of the foetus because of a poor foetal prognosis [ 8 – 10 ].…”

Section: Methodsmentioning

confidence: 99%

“…In neonates, these include non-treatment decisions such as withholding or withdrawing life-sustaining treatment, intensification of alleviation of pain and/or other symptoms with a potential life-shortening effect and intentionally ending life with lethal drugs [ 7 ]. Additionally, prenatal diagnostic techniques (genetic techniques, prenatal imaging techniques) have evolved considerably, leading to an increasing number of congenital malformations being diagnosed prenatally instead of after birth [ 8 , 9 ]. Some decisions such as abstinence from treatment [ 8 – 10 ] or termination of pregnancy (TOP) [ 8 , 9 ] can be made during gestation in cases of the detection of serious abnormalities [ 11 – 13 ].…”

Section: Introductionmentioning

confidence: 99%

“…Additionally, prenatal diagnostic techniques (genetic techniques, prenatal imaging techniques) have evolved considerably, leading to an increasing number of congenital malformations being diagnosed prenatally instead of after birth [ 8 , 9 ]. Some decisions such as abstinence from treatment [ 8 – 10 ] or termination of pregnancy (TOP) [ 8 , 9 ] can be made during gestation in cases of the detection of serious abnormalities [ 11 – 13 ]. For stillbirths from 22 weeks of gestation and onwards – which is considered as the definition of a viable foetus by the WHO – TOPs are considered late terminations.…”

Section: Introductionmentioning

confidence: 99%

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A post-mortem population survey on foetal-infantile end-of-life decisions: a research protocol

et al. 2018

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BackgroundThe death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period (> 22 weeks of gestation – 1 year) including both neonates and stillborns, are non-existent. However, important information is missed when decisions made before birth are overlooked. Our study protocol addresses this knowledge gap.MethodsFirst, a new and encompassing framework was constructed to conceptualise ELDs in the foetal-infantile period. Next, a population mortality follow-back survey in Flanders (Belgium) was set up with physicians who certified all death certificates of stillbirths from 22 weeks of gestation onwards, and infants under the age of a year. Two largely similar questionnaires (stillbirths and neonates) were developed, pilot tested and validated, both including questions on ELDs and their preceding decision-making processes. Each death requires a postal questionnaire to be sent to the certifying physician. Anonymity of the child, parents and physician is ensured by a rigorous mailing procedure involving a lawyer as intermediary between death certificate authorities, physicians and researchers. Approval by medical societies, ethics and privacy commissions has been obtained.DiscussionThis research protocol is the first to study ELDs over the entire foetal-infantile period on a population level. Based on representative samples of deaths and stillbirths and applying a trustworthy anonymity procedure, the research protocol can be used in other countries, irrespective of legal frameworks around perinatal end-of-life decision-making.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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A post-mortem population survey on foetal-infantile end-of-life decisions: a research protocol

et al. 2018

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“…Com relação ao sofrimento psicológico de se gestar uma criança com anencefalia, a literatura indica que ele existirá independente da decisão em se manter ou não a gravidez a termo [73][74][75] . Já quanto aos efeitos da decisão em si, de se interromper uma gestação por anomalias fetais, por qualquer que seja, dependerão de, além das características próprias da gestante e de sua situação familiar, de seus valores culturais e religiosos [76][77][78] .…”

Section: Sofrimento Psicológico Materno E Familiar: Risco Ou Perigo Dunclassified

Pedidos para interrupção de gestação de anencéfalos: jurisprudência no estado de São Paulo

Motta

Piacsek

Mollica³

et al. 2013

Saúde, Ét. Just.

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<p>Em 2012, foi aprovada a legalização do término de gestações de fetos anencéfalos no Brasil pelo Supremo Tribunal Federal (STF). Contudo, os tribunais brasileiros já vinham se posicionando neste sentido por vários anos, com destaque a atuação dos tribunais paulistas. O objetivo deste trabalho foi buscar o posicionamento e as justificativas que serviram de apoio às decisões referentes à interrupção das gestações de anencéfalos e observar na literatura dados referentes aos aspectos médico-legais envolvidos nas decisões. Em São Paulo, foram encontrados 30 acórdãos relacionados ao tema interrupção de gestação de anencéfalos, 9 favoráveis, 6 contrários ao aborto e 15 que não tratavam diretamente o tema. Quando autorizado, o aborto foi realizado tendo como fundamentação jurídica: a) analogia com o aborto terapêutico ou com o sentimental; b) o direito à vida, à saúde, à intimidade, à dignidade e autonomia da gestante; c) a inexigibilidade de conduta diversa da gestante; e d) a equiparação do feto anencéfalo ao morto cerebral. Já os negados, consideraram a primazia do direito à vida do nascituro e a ilegalidade da conduta. Do ponto de vista legal, além dos artigos referentes ao aborto encontrados no Código Penal, foram citados os direitos fundamentais encontrados na Constituição Federal (1988), a Lei no 9.434/97, Lei no 8.069/90, a Declaração Universal dos Direitos Humanos (1948), Declaração Universal dos Direitos da Criança (1959), as resoluções do Conselho Federal de Medicina - CFM nos 1.480/97 e 1.752/04, o Pacto de São José (Decreto no 678/92), e a Arguição de Descumprimento de Preceito Fundamental - ADPF no 54 (2008).</p>

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“…There are studies that relate to women’s experiences of prenatal diagnosis of major fetal malformation [ 6 , 11 , 20 , 21 ], followed by decision of termination [ 11 , 20 , 22 – 24 ]. In the published literature we were unable to find research that focused specifically on women’s reactions to suspected HN.…”

Section: Introductionmentioning

confidence: 99%

When fetal hydronephrosis is suspected antenatally—a qualitative study

Oscarsson

Gottvall

Swahnberg

2015

BMC Pregnancy Childbirth

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BackgroundThe information about fetal malformation findings during the ultrasound examination often comes unexpectedly, and the women and their partners may not necessarily receive any conclusive statement on the prognosis. A finding such as fetal hydronephrosis range from being a soft markers or mild anomaly, to a serious condition associated with neonatal morbidity and mortality. The aim of this study was to explore women’s reactions to the discovery of fetal hydronephrosis in the context of uncertainty regarding the prognosis.MethodsTen women were interviewed and the interviews were conducted six to twelve months after the women gave birth. They had experience of suspected fetal hydronephrosis in gestational week 18–20. The interviews were recorded, transcribed verbatim and analysed using constant comparative analysis.ResultsThe core category, ‘Going through crisis by knowing that you are doing the right thing’ illustrates the meaning of women’s reactions and feelings. It illuminates the four categories: ‘When the unexpected happens’– on the one hand, women had positive views that the suspicious malformation could be discovered; however, on the other hand, women questioned the screening. ‘To live in suspense during pregnancy’ – the suspicious malformation caused anxiety and was a stressful situation. ‘Difficulties in understanding information’ – the women thought they had limited knowledge and had difficulties in understanding the information. ‘Suppress feelings and hope for the best’ – the women tried to postpone the problem and thought they should deal with it after delivery.ConclusionsWomen are worried irrespective of suspicious or severe malformations, and in need of information and counselling tailored to their individual needs. Other sources of support could be: written information, links to reliable sources on the Internet and possibilities for ongoing follow-ups.

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Decision-Making after Ultrasound Diagnosis of Fetal Abnormality

Cited by 59 publications

References 41 publications

A post-mortem population survey on foetal-infantile end-of-life decisions: a research protocol

A post-mortem population survey on foetal-infantile end-of-life decisions: a research protocol

Pedidos para interrupção de gestação de anencéfalos: jurisprudência no estado de São Paulo

When fetal hydronephrosis is suspected antenatally—a qualitative study

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