Hope, truth, and preparing for death: perspectives of surrogate decision makers.
Hope, truth, and preparing for death: perspectives of surrogate decision makers.
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DOI：
10.7326/0003-4819-149-12-200812160-00005
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发表时间：
2008-12-16
影响因子：
39.2
通讯作者：
White DB
中科院分区：
文献类型：
--
作者：
Apatira L;Boyd EA;Malvar G;Evans LR;Luce JM;Lo B;White DB
尽管许多医生担心公开讨论预后不良会导致患者和家属失去希望，但代理“决策者”对这个话题的看法在很大程度上是未知的。了解代理决策者在讨论预后时对平衡希望和说出真相的态度。前瞻性、混合方法队列研究。加州大学弗朗西斯科分校医学中心重症监护室4个，位于加州弗朗西斯科。179名高死亡风险的无行为能力患者的替代决策者。在患者接受机械通气的第5天，与代理人进行一对一的半结构化访谈。不断比较的方法被用来归纳发展一个框架来描述参与者的反应。验证方法包括多学科分析和成员检查。总体而言，93%（179人中的166人）的代理人认为避免讨论预后是保持希望的不可接受的方式。主要的解释性主题是，及时讨论预后是必不可少的，让家庭成员的情感和后勤准备的可能性，病人的死亡。出现的其他主题包括代理人相信准确理解患者的预后可以让他们更好地支持患者和彼此，对虚假希望的道德厌恶，医生有义务讨论预后的看法，以及一些代理人主要向医生寻求真相并在其他地方寻求希望的概念。一些代理人（179人中的6人）认为医生应该保留预后信息，因为他们认为讨论死亡可能会对家庭造成情感伤害，或者可能对患者的健康产生负面影响。作者没有纵向评估早期披露预后是否预示着更少的不良丧亲结局。大多数重症患者的代理人不认为隐瞒预后信息是保持希望的可接受方式，主要是因为及时讨论预后有助于家属开始在情感上、存在上和实际上为患者死亡的可能性做好准备。
Although many physicians worry that openly discussing a poor prognosis will cause patients and families to lose hope, surrogate “decision makers’ perspectives on this topic are largely unknown. To determine surrogate decision makers’ attitudes toward balancing hope and telling the truth when discussing prognosis. Prospective, mixed-methods cohort study. 4 intensive care units at the University of California, San Francisco, Medical Center, San Francisco, California. 179 surrogate decision makers for incapacitated patients at high risk for death. One-on-one, semistructured interviews with surrogates were conducted on the patients’ 5th day of receiving mechanical ventilation. Constant comparative methods were used to inductively develop a framework to describe participants’ responses. Validation methods included multidisciplinary analysis and member checking. Overall, 93% (166 of 179) of surrogates felt that avoiding discussions about prognosis is an unacceptable way to maintain hope. The main explanatory theme was that timely discussion of prognosis is essential to allow family members to prepare emotionally and logistically for the possibility of a patient’s death. Other themes that emerged included surrogates’ belief that an accurate understanding of a patient’s prognosis allows them to better support the patient and each other, a moral aversion to the idea of false hope, the perception that physicians have an obligation to discuss prognosis, and the notion that some surrogates look to physicians primarily for truth and seek hope elsewhere. A few surrogates (6 of 179) felt that physicians should withhold prognostic information because of a belief that discussing death could be emotionally damaging to the family or could negatively affect the patient’s health. The authors did not longitudinally assess whether early disclosure about prognosis predicts fewer adverse bereavement outcomes. Most surrogates of critically ill patients do not view withholding prognostic information as an acceptable way to maintain hope, largely because timely discussions about prognosis help families begin to prepare emotionally, existentially, and practically for the possibility that a patient will die.
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