Liu Winnie L, Zhang Lidan, Djamasbi Soussan, Tulu Bengisu, Muehlschlegel Susanne
Johns Hopkins University School of Medicine, Baltimore, MD, USA.
The Business School, Worcester Polytechnic Institute, Worcester, MA, USA.
Neurotherapeutics. 2025 Jan;22(1):e00503. doi: 10.1016/j.neurot.2024.e00503. Epub 2024 Dec 6.
In the neurological intensive care unit (neuroICU), patients with severe acute brain injury (SABI) are rendered unable to make their own healthcare decisions. The responsibility of making life-or-death decisions, such as goals of care, is carried by surrogate decision-makers, usually families. In addition to the burden of decision-making, the emotional burden on families is further compounded by prognostication uncertainty, time-pressure for decision-making, and difficulties in understanding and interpreting the patient's values and preferences, ultimately resulting in potential clinician-family communication breakdown. Despite these challenges, there is currently no guidance on how to best approach these difficult decisions. Shared decision-making (SDM) has emerged as the recommended approach to improve clinician-family communication, empowering surrogates to take an active role in decision-making by providing a structured framework for information exchange, deliberation, and treatment decisions. Decision aids (DAs) facilitate SDM by offering balanced, accessible, unbiased information and helping surrogates decide according to patients' values. This review highlights the potential advantage of digital over paper-based DAs, including improved accessibility, interactivity, and personalization, and the integration of emerging technologies to enhance DA effectiveness. Additionally, we review the current digital DAs developed for the neuroICU setting.
在神经重症监护病房（neuroICU）中，严重急性脑损伤（SABI）患者无法自行做出医疗决策。诸如医疗目标等生死决策的责任由替代决策者承担，通常是患者家属。除了决策负担外，家属的情感负担还因预后不确定性、决策时间压力以及理解和解读患者价值观与偏好的困难而进一步加重，最终可能导致临床医生与家属之间的沟通破裂。尽管存在这些挑战，但目前对于如何最好地处理这些艰难决策尚无指导意见。共享决策（SDM）已成为改善临床医生与家属沟通的推荐方法，通过提供信息交流、审议和治疗决策的结构化框架，使替代决策者能够在决策中发挥积极作用。决策辅助工具（DAs）通过提供平衡、易懂、无偏见的信息并帮助替代决策者根据患者价值观进行决策，促进了共享决策。本综述强调了数字决策辅助工具相对于纸质决策辅助工具的潜在优势，包括更高的可及性、交互性和个性化，以及新兴技术的整合以提高决策辅助工具的有效性。此外，我们还综述了目前为神经重症监护病房环境开发的数字决策辅助工具。
