Physician counseling, informed consent and parental decision making for infants with hypoplastic left-heart syndrome

Jc, Paris; Mp, Moore; Schreiber,

doi:10.1038/jp.2012.72

Cited by 13 publications

(4 citation statements)

References 26 publications

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“…For example, when counseling a pregnant person and partner about fetal hypoplastic left heart disease, some may choose to counsel about rare—but significant—long-term complications such as plastic bronchitis and protein-losing enteropathy, where other fetal cardiologists leave these complications as vague possibilities or do not mention them at all. A physician may be biased based on his or her own experience, data show that uniformity in counseling is lacking, and there is variation in how much information to discuss [ 44 , 66 ]. However, recent evidence does suggest that most parents prefer to have more information that may provide guidance for the future [ 36 , 67 , 68 ].…”

Section: Discussionmentioning

confidence: 99%

Ethical Considerations in Fetal Cardiology

Samples,

Gandhi,

Woo

et al. 2024

JCDD

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Fetal cardiology has evolved over the last 40 years and changed the timing of diagnosis and counseling of congenital heart disease, decision-making, planning for treatment at birth, and predicting future surgery from the postnatal to the prenatal period. Ethical issues in fetal cardiology transect multiple aspects of biomedical ethics including improvement in prenatal detection and diagnostic capabilities, access to equitable comprehensive care that preserves a pregnant person’s right to make decisions, access to all reproductive options, informed consent, complexity in shared decision-making, and appropriate use of fetal cardiac interventions. This paper first reviews the literature and then provides an ethical analysis of accurate and timely diagnosis, equitable delivery of care, prenatal counseling and shared decision-making, and innovation through in utero intervention.

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Section: Discussionmentioning

confidence: 99%

Ethical Considerations in Fetal Cardiology

Samples,

Gandhi,

Woo

et al. 2024

JCDD

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“…With this data, parents should be referred for counseling with a specialized team, who have the duty to inform them about treatment alternatives, risks, and benefits, as well as likely scenarios if the child remains untreated. This informative process needs to be gradual and progressive, with empathy and with the necessary support for the pregnant woman and her family, and should be carried out impartially, avoiding following recommendations that the doctor or team believe to be “the most reasonable treatment option”, or the one that is usually practiced in that service 5 , 25 .…”

Section: Bioethical Discussionmentioning

confidence: 99%

The care of the patients with hipoplastic left heart syndrome in places of social and economic vulneability. An ethical analysis

ROCHA

FONSECA

Silva

2023

Rev. Col. Bras. Cir.

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The birth of a child means hope and joy, particularly for the parents and the healthcare team. When this child is born with a severe malformation and a poor prognosis, as in the case of hypoplastic left heart syndrome, the scenario is one of great uncertainty and emotional suffering. The role of the health team becomes fundamental for the identification of conflicts of values and for the search for shared decisions that promote the best benefit to the child. When the diagnosis is made during fetal life, it is necessary to develop counseling strategies appropriate to the context of each family. In places with limited care resources, precarious prenatal care and short temporal conditions, the recommended counseling is compromised. Indication of treatment requires technical competence and a detailed analysis of ethical issues, and consultation with institutional clinical bioethics services or commissions is important. The article proposes to address the moral conflicts of two clinical cases and the respective bioethical analysis that involves principles and values in contexts of vulnerability and uncertainty, contrasting two situations where the indication of treatment was based on accessibility to treatment.

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“…Com esses dados, os pais devem ser encaminhados para aconselhamento com equipe especializada, que têm o dever de informá-los sobre as alternativas de tratamento, os riscos e os benefícios, além de cenários prováveis se a criança permanecer não tratada. Esse processo informativo precisa ser gradual e progressivo, com empatia e com o suporte necessário para a gestante e para a família, devendo ser realizado de forma imparcial, evitando seguir recomendações que o médico ou equipe acreditam ser "a opção mais razoável de tratamento", ou àquela que costumeiramente é praticada naquele serviço 5,25 .…”

Section: Aconselhamento Aos Paisunclassified

O cuidado de pacientes com síndrome do coração esquerdo hipoplásico em localidades de vulnerabilidade social e econômica. Uma análise bioética

ROCHA

FONSECA

Silva

2023

Rev. Col. Bras. Cir.

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RESUMO O nascimento de uma criança significa esperança e alegria, particularmente para os pais e para a equipe de saúde. Quando essa criança nasce com uma malformação grave e de prognóstico reservado, como acontece na SHCE, o cenário é de grande incerteza e sofrimento emocional. O papel da equipe de saúde torna-se fundamental para a identificação de conflitos de valores e para a busca de decisões compartilhadas que promovam o melhor benefício à criança. Quando o diagnóstico é feito em vida fetal, é necessário a elaboração de estratégias de aconselhamento adequadas ao contexto de cada família. Em locais com recursos assistenciais limitados, acompanhamento prénatal precário e condição temporal curta, o aconselhamento preconizado fica comprometido. A indicação do tratamento requer competência técnica e uma análise pormenorizada de questões éticas, sendo importante a consultoria aos serviços ou comissões de bioética clínica institucional. O artigo propõe a abordar os conflitos morais de dois casos clínicos e a respectiva análise bioética que envolve princípios e valores em contextos de vulnerabilidade e incertezas, contrapondo duas situações onde a indicação do tratamento baseou-se na acessibilidade ao tratamento.

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Physician counseling, informed consent and parental decision making for infants with hypoplastic left-heart syndrome

Cited by 13 publications

References 26 publications

Ethical Considerations in Fetal Cardiology

Ethical Considerations in Fetal Cardiology

The care of the patients with hipoplastic left heart syndrome in places of social and economic vulneability. An ethical analysis

O cuidado de pacientes com síndrome do coração esquerdo hipoplásico em localidades de vulnerabilidade social e econômica. Uma análise bioética

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