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围产期姑息治疗服务:为患有严重胎儿疾病的脆弱婴儿制定综合关怀方案。

Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions.

机构信息

Perinatal Palliative (PeriPal) Care, KK Women's and Children's Hospital, Singapore, Singapore.

Academic Clinical Programme, Duke-NUS Medical School, Singapore.

出版信息

J Palliat Care. 2022 Oct;37(4):471-475. doi: 10.1177/08258597211046735. Epub 2021 Oct 12.

DOI:10.1177/08258597211046735
PMID:34636715
Abstract

Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. To develop a service providing individually tailored holistic care during pregnancy, birth, postnatal and bereavement period. Following a baseline survey of neonatologists and discussions with key stakeholders we launched the Perinatal Palliative service at the KK Women's and Children's hospital, Singapore in January 2017. The multidisciplinary team, led by a Palliative care specialist comprised of Obstetricians, Neonatologists, nurses and medical social workers. The Birth defect clinic referred parents with antenatally diagnosed 'Lethal' fetal conditions. The team checked the understanding and the decision making process of parents and initiated and finalized advance care plans. The service also embraced deserving postnatal referrals upon request. A total of 41 cases were seen from January 2017 to December 2019. Of these, 26/41(63%) were referred antenatally and had completed advance care plans. 18/41 (44%) died during or shortly after birth and 10/41(24%) continue to survive and are supported by the community palliative team. During this time a workflow was formulated and modified based on parent and team feedback. Awareness of the service has increased over the years and a clear workflow has been formulated. Advance care plans are prepared and documented before birth so as to enable service teams on board to provide well timed pertinent care. Feedbacks from parents about this service were positive.

摘要

围产期姑息治疗为预期和新父母提供全面和整体的护理,这些父母在胎儿被诊断出患有生命有限的疾病后选择继续妊娠并照顾他们的新生儿。目的是在怀孕、分娩、产后和丧亲期间提供个性化的整体护理服务。在对新生儿科医生进行基线调查并与主要利益相关者进行讨论后,我们于 2017 年 1 月在新加坡 KK 妇女儿童医院推出了围产期姑息治疗服务。多学科团队由一名姑息治疗专家领导,成员包括产科医生、新生儿科医生、护士和医务社工。出生缺陷诊所将产前诊断为“致命”胎儿疾病的父母转介过来。团队检查了父母的理解和决策过程,并启动和完成了预先护理计划。该服务还根据需要接受产后转诊。自 2017 年 1 月至 2019 年 12 月,共接诊了 41 例病例。其中,26/41(63%)是产前转介的,并且已经完成了预先护理计划。18/41(44%)在分娩期间或分娩后不久死亡,10/41(24%)继续存活,并得到社区姑息治疗团队的支持。在此期间,根据家长和团队的反馈,制定并修改了工作流程。多年来,人们对该服务的认识有所提高,并且已经制定了明确的工作流程。预先护理计划在分娩前制定并记录,以便为服务团队提供及时的相关护理。家长对这项服务的反馈是积极的。

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[Perinatal palliative care performed in obstetrics and neonatology wards and hospices for children - own experience].[在产科、新生儿病房及儿童临终关怀机构开展围产期姑息治疗——自身经验]
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Referrals to a perinatal specialist palliative care consult service in Ireland, 2012-2015.爱尔兰 2012-2015 年向围产期专科姑息治疗咨询服务转诊的情况。
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Development and results of perinatal palliative care program: a retrospective cohort study.围产期姑息治疗项目的开展与结果:一项回顾性队列研究。
Eur J Pediatr. 2025 Jun 9;184(7):404. doi: 10.1007/s00431-025-06210-9.
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Ethical issues in perinatal communication.围产期沟通中的伦理问题。
Eur J Pediatr. 2024 Dec 26;184(1):106. doi: 10.1007/s00431-024-05928-2.
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Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years.专科围产期舒缓治疗:对儿童舒缓治疗服务 14 年来的产前转介进行回顾性分析。
BMC Palliat Care. 2023 Nov 10;22(1):177. doi: 10.1186/s12904-023-01302-5.
4
Perinatal palliative care: focus on comfort.围产期姑息治疗:关注舒适护理。
Front Pediatr. 2023 Sep 26;11:1258285. doi: 10.3389/fped.2023.1258285. eCollection 2023.
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Components of Perinatal Palliative Care: An Integrative Review.围产期姑息治疗的组成部分:一项综合综述。
Children (Basel). 2023 Mar 1;10(3):482. doi: 10.3390/children10030482.
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Hopes expressed in birth plans by women diagnosed with fetal anomalies: a qualitative study in Japan.在日本,对被诊断出胎儿畸形的女性进行的出生计划中表达的希望:一项定性研究。
BMC Pregnancy Childbirth. 2022 Oct 23;22(1):788. doi: 10.1186/s12884-022-05115-x.