Anticipating uncertainty and irrevocable decisions: provider perspectives on implementing whole-genome sequencing in critically ill children with heart disease
Anticipating uncertainty and irrevocable decisions: provider perspectives on implementing whole-genome sequencing in critically ill children with heart disease
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DOI：
10.1038/gim.2018.25
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发表时间：
2018-11-01
影响因子：
8.8
通讯作者：
Cho, Mildred
中科院分区：
文献类型：
--
作者：
Char, Danton S.;Lee, Sandra Soo-Jin;Cho, Mildred
目的：为了研究全基因组测序（WGS）在儿科重症监护环境中的潜在影响，我们研究了照顾患有先天性心脏病（CHD）的重症儿童的临床医生如何预测和感知WGS对其决策过程和治疗建议的影响。方法：我们对一家高容量儿科心脏中心参与冠心病危重患儿护理的临床医生进行了半结构化的面对面和电话访谈。结果：共访谈34名临床医师。出现了三个主题：（i）WGS测试的准确性和测试验证的充分性的不确定性;（ii）使用WGS来促进限制生命的决定，如徒劳、配给和选择性产前终止;和（iii）在缺乏决策支持的情况下使用WGS的道德困扰。尽管WGS测试存在不确定性，但受访的临床医生正在使用，并预计将扩大使用，WGS结果可证明CHD重症儿童无效、撤销治疗和配给的声明。这种情况正在给提供者造成道德压力，他们必须在对WGS结果只有部分了解的情况下做出涉及WGS结果的高风险决策。需要为临床医生提供决策支持，并与家庭讨论使用WGS进行配给或停药的风险。
Purpose: To investigate the potential impacts of whole-genome sequencing (WGS) in the pediatric critical-care context, we examined how clinicians caring for critically ill children with congenital heart disease (CHD) anticipate and perceive the impact of WGS on their decision-making process and treatment recommendations.Methods: We conducted semistructured in-person and telephone interviews of clinicians involved in the care of critically ill children with CHD at a high-volume pediatric heart center. We qualitatively analyzed the transcribed interviews.Results: In total, 34 clinicians were interviewed. Three themes emerged: (i) uncertainty about the accuracy of WGS testing and adequacy of testing validation; (ii) the use of WGS to facilitate lifelimiting decisions such as futility, rationing, and selective prenatal termination; and (iii) moral distress over using WGS with a lack of decision support.Conclusion: Despite uncertainty about WGS testing, the interviewed clinicians were using, and anticipated expanding the use of, WGS results to justify declarations of futility, withdrawal of care, and rationing in critically ill children with CHD. This situation is causing moral distress in providers who have to make high-stakes decisions involving WGS results, with only partial understanding of them. Decision support for clinicians, and discussion with families of the risks of using WGS for rationing or withdrawal, is needed.