Johns Hopkins Bloomberg School of Public Health in Baltimore, MD USA.
Johns Hopkins Berman Institute of Bioethics and Division of Neonatal-Perinatal Medicine, Division of Neonatology, Johns Hopkins School of Medicine, Baltimore, MD USA.
J Clin Ethics. 2020 Winter;31(4):340-352.
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.
患有慢性危重病（CCI）的儿童人数在美国不断增加。这一人群的一个显著特点是住院时间延长。我们的研究评估了美国某一时间点慢性危重病儿科患者的比例，并确定了一部分住院时间为数月至数年的儿童。患有 CCI 的儿童长时间住院可能带来诸多危害，包括过度治疗、感染、家庭生活中断以及资源的密集利用——再加上照顾这些孩子的临床医生所经历的道德困境，这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哪些行动来减少与长时间住院相关的危害。在本文中，我们呈现了来自我们研究的三个真实案例，这些案例都涉及非常长的住院时间。我们应用了 Mackenzie、Rogers 和 Dodds 制定的框架来分析固有、情境和发病脆弱性，以研究旨在纠正我们研究队列中儿童某一来源伤害的干预措施如何无意中造成其他伤害。我们仔细研究了长时间住院的儿童如何容易受到其家庭和临床医生、医疗保健系统和社区选择的影响。最后，我们使用这种分析来总结针对这一不断增加的患者群体的行动和伦理反应。这种理解对于为那些有长时间住院风险的儿童做出临床和伦理决策至关重要。
