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本文引用的文献

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Outcomes in Hypoplastic Left Heart Syndrome.左心发育不全综合征的结果。
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2
Primary Transplantation for Congenital Heart Disease in the Neonatal Period: Long-term Outcomes.新生儿期先天性心脏病的初次移植:长期结果。
Ann Thorac Surg. 2019 Dec;108(6):1857-1864. doi: 10.1016/j.athoracsur.2019.06.022. Epub 2019 Jul 27.
3
Hypoplastic left heart syndrome: from fetus to fontan.左心发育不全综合征:从胎儿到Fontan手术
Cardiol Young. 2018 Nov;28(11):1275-1288. doi: 10.1017/S104795111800135X. Epub 2018 Sep 18.
4
The Genetic Landscape of Hypoplastic Left Heart Syndrome.左心发育不全综合征的遗传图谱
Pediatr Cardiol. 2018 Aug;39(6):1069-1081. doi: 10.1007/s00246-018-1861-4. Epub 2018 Mar 22.
5
Current Therapy for Hypoplastic Left Heart Syndrome and Related Single Ventricle Lesions.目前针对左心发育不全综合征及相关单心室病变的治疗方法。
Circulation. 2016 Oct 25;134(17):1265-1279. doi: 10.1161/CIRCULATIONAHA.116.022816.
6
Some Ethical Legal Issues in Heart Disease Surgery.心脏病手术中的一些伦理法律问题。
Acta Cardiol Sin. 2014 Nov;30(6):529-37. doi: 10.6515/acs20140929b.
7
Ethical considerations in neonatal end-of-life care.新生儿临终关怀的伦理问题。
Semin Fetal Neonatal Med. 2013 Apr;18(2):105-10. doi: 10.1016/j.siny.2012.10.011. Epub 2012 Nov 29.
8
Physician counseling, informed consent and parental decision making for infants with hypoplastic left-heart syndrome.医师咨询、知情同意和父母决策在左心发育不良综合征婴儿中的应用。
J Perinatol. 2012 Oct;32(10):748-51. doi: 10.1038/jp.2012.72. Epub 2012 Jun 7.
9
Hypoplastic left heart syndrome: current considerations and expectations.左心发育不全综合征:当前的考虑和预期。
J Am Coll Cardiol. 2012 Jan 3;59(1 Suppl):S1-42. doi: 10.1016/j.jacc.2011.09.022.
10
Informed consent, bioethical equipoise, and hypoplastic left heart syndrome.知情同意、生物伦理平衡与左心发育不全综合征
Cardiol Young. 2011 Dec;21 Suppl 2:133-40. doi: 10.1017/S1047951111001715.

社会经济弱势地区先天性左心发育不全综合征患者的护理。伦理分析。

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

机构信息

- Universidade Federal de Pernambuco, Programa de Pós-graduação em Cirurgia - Recife - PE -Brasil.

- Universidade Federal do Cariri, Faculdade de Medicina - Barbalha - CE - Brasil.

出版信息

Rev Col Bras Cir. 2023 Apr 14;50:e20233437. doi: 10.1590/0100-6991e-20233437-en. eCollection 2023.

DOI:10.1590/0100-6991e-20233437-en
PMID:37075465
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10508666/
Abstract

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.

摘要

孩子的诞生意味着希望和喜悦,尤其是对于父母和医疗团队来说。然而,当孩子出生时患有严重的畸形和预后不良,例如左心发育不全综合征时,情况就充满了极大的不确定性和情感痛苦。医疗团队的角色对于识别价值观冲突以及寻找共同决策至关重要,这些决策旨在促进孩子的最佳利益。当在胎儿期做出诊断时,有必要制定适合每个家庭背景的咨询策略。在医疗资源有限、产前护理不稳定且时间紧迫的地方,推荐的咨询会受到影响。治疗的指征需要技术能力和对伦理问题的详细分析,咨询机构临床生物伦理服务或委员会非常重要。本文旨在解决两个临床案例中的道德冲突,并进行相应的生物伦理分析,涉及到在脆弱和不确定的背景下的原则和价值观,对比了两种基于治疗可及性来确定治疗指征的情况。