Norwegian University of Science and Technology, Norway.
St. Olav's University Hospital, Norway; Norwegian University of Science and Technology, Norway.
Nurs Ethics. 2020 Aug;27(5):1282-1296. doi: 10.1177/0969733019871691. Epub 2019 Sep 10.
Neonatologists, legal experts and ethicists extensively discuss the ethical challenges of decision-making when a child is born at the limit of viability. The voices of parents are less heard in this discussion. In Norway, parents are actively shielded from the burden of decision-making responsibility. In an era of increasing patient autonomy, is this position still defendable?
In this article, we discuss the role of parents in neonatal decision-making, based on the following research question:
We conducted eight interviews with 12 parents, 4 individuals and 4 couples, all having experienced prenatal counselling at the limit of viability. The interviews took place at different university locations in Norway in the years 2014-2018.
All study participants gave their written informed consent. The Regional Committee for Medical Research Ethics approved the study.
We identified six main themes in parents' responses to the research question. Parents (1) experienced an emotional turmoil confronted with birth at the border of viability, (2) emphasized the importance of being involved in decision-making, (3) described and reflected on the need to balance the parental instinct of saving, (4) were concerned about the dilemmas involved in protecting the family, (5) were worried about the burden of overwhelming responsibility and (6) called for guideline relief.
The perceived parental instinct of saving the life of their child makes it hard for parents to step away from a call for 'everything to be done'. Involvement of an interprofessional periviability team drawing on the experiences and viewpoints of nurses and neonatologists in decision-making is needed to protect both infants and parents against undue parental push for treatment and enable parents to make good decisions regarding their child.
新生儿科医生、法律专家和伦理学家广泛讨论了当孩子在可存活极限出生时的决策所面临的伦理挑战。在这场讨论中，父母的声音较少被听到。在挪威，父母积极地被免除决策责任的负担。在患者自主权日益增强的时代，这种立场还能站得住脚吗？
在本文中，我们基于以下研究问题，讨论了父母在新生儿决策中的作用：
我们对 12 名父母进行了 8 次访谈，其中包括 4 名个体和 4 对夫妇，他们都曾在可存活极限进行过产前咨询。访谈于 2014 年至 2018 年在挪威的不同大学地点进行。
所有研究参与者均书面同意参加。区域医学研究伦理委员会批准了该研究。
我们从父母对研究问题的回答中确定了六个主要主题。父母（1）在面对极早产儿出生的问题时经历了情感上的困扰，（2）强调了参与决策的重要性，（3）描述和反思了平衡父母拯救本能的必要性，（4）关注保护家庭所涉及的困境，（5）担心承担压倒性责任的负担，（6）呼吁减轻指南的负担。
父母拯救孩子生命的感知本能使得他们难以放弃“尽一切努力”的呼吁。需要一个跨专业的围产团队参与决策，该团队可以借鉴护士和新生儿科医生的经验和观点，以保护婴儿和父母免受过度的父母治疗压力，并使父母能够就其孩子做出明智的决策。
