在危及生命的疾病中提供信息:全面的框架
Liesbeth M van Vliet1, Jonathan Koffman2, Eve Namisango3
1Health and Medical Psychology, Leiden University Faculty of Social and Behavioural Sciences, Leiden, The Netherlands l.m.van.vliet@fsw.leidenuniv.nl.
BMJ supportive & palliative care
|May 2, 2025
概括
在危及生命的疾病中,患者对信息披露的偏好各不相同. 这项研究为临床医生提供了一个框架和指导,以导航患者不披露的愿望,促进公平的终身护理.
科学领域:
- 医学伦理 医学伦理
- 患者沟通 患者沟通
- 全球卫生平等全球卫生平等
背景情况:
- 开放的信息共享有利于危急疾病患者和家属.
- 患者对信息披露的偏好各不相同,有些人不太希望完全透明.
- 目前的临床指南缺乏管理患者非披露偏好的具体策略.
研究的目的:
- 为临床医生制定一个概念框架和实际指导.
- 解决患者信息偏好的范围,特别是当不希望完全披露信息时.
- 支持临床医生在危及生命的疾病中导航复杂的沟通场景.
主要方法:
- 召开了多学科专家利益相关者会议.
- 涉及来自不同学科和全球地区的20名专家利益相关者.
- 利用定性结果为框架开发提供信息.
主要成果:
- 开发了一个概念框架,强调信息价值受到临床医生和患者/家庭的解释的影响.
- 确定了伦理和社会文化紧张局势,例如自主权冲突,影响信息价值和患者赋权.
- 为临床医生生成实用指南,包括培养联系和保持开放态度.
结论:
- 开发的框架对临床实践,研究和政策都有影响.
- 该框架作为减少全球终身护理信息不平等的基础.
- 建议对框架进行进一步的改进和测试.
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