Living in the Hospital: The Vulnerability of Children with Chronic Critical Illness.

Q3 Medicine Journal of Clinical Ethics Pub Date : 2020-01-01
Alexandra R Ruth, Renee D Boss, Pamela K Donohue, Miriam C Shapiro, Jessica C Raisanen, Carrie M Henderson
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Abstract

The number of children with chronic critical illness (CCI) is a growing population in the United States. A defining characteristic of this population is a prolonged hospital stay. Our study assessed the proportion of pediatric patients with chronic critical illness in U.S. hospitals at a specific point in time, and identified a subset of children whose hospital stay lasted for months to years. The potential harms of a prolonged hospitalization for children with CCI, which include over treatment, infection, disruption of family life, and the intensive utilization of resources-combined with the moral distress experienced by the clinicians who care for the children, suggest the need for ethical analysis of this growing issue to identify actions that could be taken at the clinical and health systems levels to reduce the harms associated with prolonged hospital stay. In this article we present three real cases from our study that involved a very long hospital stay. We applied a framework developed by Mackenzie, Rogers, and Dodds to analyze inherent, situational, and pathogenic vulnerabilities to examine the ways that interventions intended to remedy one source of harm for the children in our cohort inadvertently created other harms. We examined the complex ways that children with protracted hospitalization are vulnerable to the choices made by their family and clinicians, as well as by healthcare systems and communities. Finally, we used this analysis to summarize actions and ethical responses to this growing patient population. Such an understanding is essential to make clinical and ethical decisions that arise for children who are at risk for a very long stay in the hospital.

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生活在医院:慢性危重症儿童的脆弱性。
在美国,患有慢性危重疾病(CCI)的儿童人数正在增长。这一人群的一个决定性特征是住院时间过长。我们的研究评估了美国医院在特定时间点患有慢性危重疾病的儿科患者的比例,并确定了住院时间长达数月至数年的儿童子集。CCI儿童长期住院治疗的潜在危害,包括过度治疗、感染、家庭生活中断和资源的密集利用,再加上照顾儿童的临床医生所经历的道德困境,表明需要对这一日益严重的问题进行伦理分析,以确定在临床和卫生系统层面可以采取的行动,以减少与长期住院有关的危害。在这篇文章中,我们从我们的研究中提出了三个涉及很长时间住院的真实案例。我们应用了Mackenzie、Rogers和Dodds开发的框架来分析固有的、情境的和致病性的脆弱性,以检查旨在弥补我们队列中儿童伤害的一个来源的干预措施在无意中造成其他伤害的方式。我们研究了长期住院的儿童容易受到其家庭和临床医生以及医疗保健系统和社区做出的选择的复杂方式。最后,我们利用这一分析来总结针对这一不断增长的患者群体的行动和伦理反应。这样的理解对于那些面临长期住院风险的儿童做出临床和伦理决定至关重要。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Journal of Clinical Ethics
Journal of Clinical Ethics Medicine-Medicine (all)
CiteScore
1.40
自引率
0.00%
发文量
31
期刊介绍: The Journal of Clinical Ethics is written for and by physicians, nurses, attorneys, clergy, ethicists, and others whose decisions directly affect patients. More than 70 percent of the articles are authored or co-authored by physicians. JCE is a double-blinded, peer-reviewed journal indexed in PubMed, Current Contents/Social & Behavioral Sciences, the Cumulative Index to Nursing & Allied Health Literature, and other indexes.
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