Haward Marlyse F, Janvier Annie, Lorenz John M, Fischhoff Baruch
a Children's Hospital at Montefiore, Albert Einstein College of Medicine.
b Department of Pediatrics and Clinical Ethics , Université de Montréal, Division of Neonatology, Hôpital Sainte-Justine, Bureau de L'éthique Clinique, Université de Montréal, and Centre de Recherche, Hôpital Sainte-Justine.
AJOB Empir Bioeth. 2017 Oct-Dec;8(4):243-252. doi: 10.1080/23294515.2017.1394399. Epub 2017 Oct 19.
It is not known how neonatologists address the affective and cognitive loads on parents deciding whether to resuscitate infants born extremely preterm. This study explores expert neonatologists' views on these decision-making processes and their own roles in counseling parents.
Semistructured interviews asked internationally recognized experts to share their perspectives on perinatal consultations. Their responses were subjected to thematic analysis.
Eighteen of 22 invited experts participated. Approximately equal numbers reported employing a physician-driven approach, a parent-driven approach, and a combined approach during these consultations. Those who followed a physician-driven approach typically focused on conveying standard information about adverse outcomes. Those who followed a parent-driven approach typically focused on addressing parents' information requests, guiding their decision making, and providing affective support. Nearly all experts, in each group, endorsed addressing the child's quality of life, in terms of functionality, when discussing long-term outcomes. Although many believed that families adjusted to life with a disabled child, few discussed the topic during prenatal consultations. Most, in each group, reported trying to alleviate future "decisional regret" for parents whose premature infants subsequently became disabled. None spoke to parents about possible decisional regret after deciding to forgo resuscitation.
Expert neonatologists are deeply concerned that parents understand the decision facing them. However, they differ on what information they offer and how they balance parents' need for cognitive and affective support. They expressed more concern about parents' decisional regret should their child survive resuscitation, but have severe disability, than about decisional regret after foregoing resuscitation.
尚不清楚新生儿科医生如何应对决定是否对极早产儿进行复苏的父母所承受的情感和认知负担。本研究探讨了专家级新生儿科医生对这些决策过程的看法以及他们在为父母提供咨询时所扮演的角色。
通过半结构化访谈，邀请国际知名专家分享他们对围产期咨询的看法。对他们的回答进行了主题分析。
22名受邀专家中有18名参与。在这些咨询中，报告采用医生主导方法、家长主导方法和综合方法的人数大致相等。采用医生主导方法的人通常专注于传达有关不良后果的标准信息。采用家长主导方法的人通常专注于满足家长的信息需求、指导他们的决策并提供情感支持。几乎所有各组的专家在讨论长期结果时都认可从功能方面考虑孩子的生活质量。尽管许多人认为家庭能够适应有残疾孩子的生活，但很少有人在产前咨询中讨论这个话题。每组中的大多数人报告说，他们试图减轻那些早产儿后来致残的父母未来的“决策遗憾”。没有人跟父母谈及决定放弃复苏后可能产生的决策遗憾。
专家级新生儿科医生深切关注父母理解他们所面临的决策。然而，他们在提供何种信息以及如何平衡父母对认知和情感支持的需求方面存在差异。对于孩子复苏成功但有严重残疾时父母的决策遗憾，他们表达了更多关注，而非放弃复苏后的决策遗憾。
