Bartlett Virginia L, Finder Stuart G
Center for Healthcare Ethics, Cedars-Sinai Medical Center, Los Angeles, CA USA.
Asian Bioeth Rev. 2018 Mar 14;10(1):21-36. doi: 10.1007/s41649-018-0045-0. eCollection 2018 Mar.
Since the concept of the living wills emerged nearly 50 years ago, there have been practical challenges in translating the concept of an advance directive (AD) into documents that are clinically useful across various healthcare settings and among different patient populations and cultures. Especially, challenging has been the reliance in most ADs on pre-selected "choices" about specific interventions which either revolve around broad themes (e.g., "prolong life / do not prolong life") or whether or not to utilize particular interventions (e.g., CPR, mechanical ventilation), both of which about most laypersons know little and, more importantly, lacking context, prove to be of limited meaningfulness. Moreover, whether by foundational frame, decade-long misunderstanding in medicine and bioethics, or different societal customs, these ADs present decision-making responsibility for initiating, continuing, or withdrawing medical interventions as a patient responsibility-creating a burden for which most patients are unprepared-and hence reducing healthcare providers' responsibility to mere technical application or customer service. At our institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients (articulating their goals, values, and preferences) and physicians (using medical expertise to reach patient goals) for enabling appropriate plans of care. This includes re-structuring our AD form to more accurately represent patient's values physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters to them as well as what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue-or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity.
自从生前预嘱的概念近50年前出现以来，在将预先医疗指示（AD）的概念转化为在各种医疗环境以及不同患者群体和文化中都具有临床实用性的文件方面一直存在实际挑战。特别是，大多数预先医疗指示依赖于围绕特定干预措施的预先选定的“选择”，这些选择要么围绕宽泛的主题（例如，“延长生命/不延长生命”），要么涉及是否使用特定干预措施（例如，心肺复苏、机械通气），而大多数外行人对这两者知之甚少，更重要的是，缺乏背景信息，这些选择的意义有限。此外，无论是由于基本框架、医学和生物伦理学长达十年的误解，还是不同的社会习俗，这些预先医疗指示将启动、继续或停止医疗干预的决策责任视为患者的责任，给大多数患者带来了他们未做好准备的负担，从而将医疗服务提供者的责任降低为仅仅是技术应用或客户服务。在我们机构，大量努力集中于接受患者（阐明他们的目标、价值观和偏好）和医生（利用医学专业知识实现患者目标）独特且互补的责任，以促成适当的护理计划。这包括重新构建我们的预先医疗指示表格，以更准确地体现患者的价值观，医生负责确定适当的护理。预先医疗指示不是指定干预措施，而是让患者负责指定对他们重要的事情以及他们在功能、互动和可接受负担水平方面重视的东西，从而为临床医生提供明确的目标以供追求——或者当现有医疗干预措施无法实现目标时，承认并允许合理转向可能实现的目标，包括在临终情况下，专注于尊重和尊严的护理。
