Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Pediatrics. 2018 Nov;142(Suppl 3):S133-S141. doi: 10.1542/peds.2018-0516C.
We describe a model of parental (or more broadly, surrogate) decision-making that includes 5 aspects of decision-making that other models simplify or omit. First, we describe problem structuring recognizing that parents often face multiple potential problems or decisions with multiple potential solutions, rather than a single problem, and the initial challenge is deciding which of the problems to focus on. Second, we discuss sense-making recognizing that difficult decisions are not made in isolation but are often part of a confusing, labyrinthian situation in which disoriented parents must make a series of decisions over time in hopes of getting closer to 1 or more goals. Third, we describe path dependency recognizing that decisions influence what and how decisions are made later. Fourth, we discuss personal sense of duty recognizing that parents and other surrogate decision-makers have central personal roles, self-identities, and relationships with the patient, culminating in a personal sense of duty, such as what they perceive they should do to be in their own judgment a "good parent," which substantially affects their decision-making. Fifth, we describe self-judgments recognizing that parents experience distress when they judge themselves as falling short of their duties or if they think others are judging them for falling short. Clinical practice, medical ethics, and research regarding decision support can all benefit by acknowledging and addressing these key aspects of medical decision-making.
我们描述了一种父母(或更广泛地说,代理人)决策模型,其中包括其他模型简化或省略的 5 个决策方面。首先,我们描述问题结构,认识到父母通常面临多个潜在问题或多个潜在解决方案的决策,而不是单一问题,并且最初的挑战是决定关注哪些问题。其次,我们讨论意义构建,认识到困难的决策不是孤立做出的,而是经常是在一个混乱的、迷宫般的情况下的一部分,在这种情况下,迷失方向的父母必须随着时间的推移做出一系列决策,希望能够更接近 1 个或多个目标。第三,我们描述路径依赖,认识到决策会影响以后的决策内容和方式。第四,我们讨论个人责任感,认识到父母和其他代理人决策者具有核心的个人角色、自我认同以及与患者的关系,最终形成个人责任感,例如他们认为自己应该做些什么来在自己的判断中成为“好父母”,这会极大地影响他们的决策。第五,我们描述自我判断,认识到父母在自我判断未能履行职责时会感到痛苦,或者如果他们认为别人因为自己未能履行职责而评判自己时也会感到痛苦。临床实践、医学伦理和决策支持研究都可以通过承认和解决这些医疗决策的关键方面受益。