确立严重和复杂儿科疾病的照护目标。
Establishing Goals of Care in Serious and Complex Pediatric Illness.
机构信息
Department of Pediatrics, Center for Bioethics and Medical Humanities, University of Mississippi Medical Center, 2500 North State Street, Jackson, MS 39216, USA.
Department of Pediatrics, Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics, 200 North Wolfe Street, Suite 2019, Baltimore, MD 21287, USA.
出版信息
Pediatr Clin North Am. 2024 Feb;71(1):71-82. doi: 10.1016/j.pcl.2023.08.008. Epub 2023 Sep 19.
An increasing number of children are living for months and years with serious/complex illness characterized by long-term prognostic uncertainty, intensive interactions with medical systems, functional limitations, and often home medical technologies that shape the child's and family's quality of life. These families face many medical decision points that require intentional and iterative discussions about goals of care. Threats to cohesive goals of care include prognostic uncertainty, diffusion of medical responsibility, individual family context, and blended goals of care. This article offers strategies for addressing each of these challenges.
越来越多的儿童患有长期预后不确定、与医疗系统频繁互动、存在功能障碍且通常需要家庭医疗技术的严重/复杂疾病，这些疾病会影响儿童及其家庭的生活质量。这些家庭面临许多医疗决策点，需要对护理目标进行有针对性和反复的讨论。影响护理目标一致性的因素包括预后不确定、医疗责任扩散、个体家庭背景和混合护理目标。本文提供了应对这些挑战的策略。
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