Exploring how spokespersons understand and experience surrogate decision-making

摘要：探索代言人如何理解和体验代理决策 提前护理计划的重要性得到了广泛的赞赏。我们从目前的研究中学到了什么 (#5R01NR012757)然而，ACP干预被证明对患者有效，而临床医生不是 对患有严重、晚期疾病的患者的发言人也是如此，尤其是似乎没有减少 代言人因代孕决策而苦恼。我们还发现，代言人经常构思代孕 决策不同于临床医生/研究人员。这一新发现很重要，因为要评估ACP 帮助确保患者的意愿得到尊重，或准备代言人代表患者，或减少决策 在遇到困难时，我们首先必须能够准确地确定是否以及何时做出了代孕决定。所以，如果(作为我们的 数据表明)发言人对代孕决策的概念化和报告通常不同于临床医生和 研究人员，必须充分了解这些差异，然后才能设计有效的ACP干预措施 发言人。 这项为期3年的研究将利用一个难得的机会来研究一大批 处于代理决策阵痛中的发言人。具体来说，我们将继续关注150名发言人( 已在我们的父母R01补助金中登记的患者)。使用融合的混合- 方法研究设计我们将：1)在发言人做出(或报告他们做出) 代孕决策并进行人种学分析；2)测量他们在代孕决策中的苦恼，如 以及他们的个体决策风格和人格特质的量化问卷；3)转型 将定性主题分成类别，并将它们与量化数据(人格特质、决策风格和主观因素)联系起来 压力)使用联合显示器；以及4)将这些发现与来自父R01的数据相结合。在此基础上，我们将发展 建议调整非加太干预措施，以更好地满足发言人的情感和其他需求。 拟议的研究利用了一个难得的和对时间敏感的机会，获得了高度概括的 了解严重、晚期疾病患者代言人对非物质文化遗产的需求。具体地说， 发言人已经参加了家长R01研究(两次考察访问之间的流失率仅为6%)； 在研究期间将发生的预期替代决策将生成广泛的定性数据，这些数据可以 与新的和现有的数据相集成；混合方法方法将揭示新的见解 通过独立检查定性和定量的发现而获得的。这项研究还将确定心理 与更好的结果相关的因素(特别是较少的痛苦)，这将使我们的跨学科团队能够 生成针对发言人情感需求的定制非加太干预措施的建议。已被占用 总之，拟议的研究有可能通过帮助研究人员和临床医生极大地提高ACP的疗效 创建和实施量身定做的非加太干预措施，以更好地符合发言人的需求-他们被称为 有权代表重病患者，并在患者无法做出生死攸关的医疗决定时。

Abstract for: Exploring How Spokespersons Understand and Experience Surrogate Decision Making The importance of advance care planning is widely appreciated. What we have learned from our current study (#5R01NR012757), however, is that ACP interventions demonstrated to be effective with patients and clinicians do not work as well for spokespersons of patients with serious, advanced illness, and in particular do not appear to decrease spokesperson distress from surrogate decision-making. We also discovered that spokespersons often conceive of surrogate decision-making differently than clinicians/researchers. This new discovery is important because to evaluate whether ACP helps ensure a patient's wishes are respected, or prepares a spokesperson to represent a patient, or decreases decisional distress, we must first be able to accurately identify whether and when a surrogate decision has been made. So, if (as our data suggest) spokespersons often conceptualize and report surrogate decision-making differently than clinicians and researchers, such differences must be well understood before we can design ACP interventions that are effective for spokespersons. This 3-year study will capitalize on a rare opportunity to study the actual experiences of a large cohort of spokespersons in the throes of surrogate decision-making. Specifically, we will continue to follow 150 spokespersons (of patients with serious, advanced illness) who are already enrolled in our parent R01grant. Using a convergent mixed- methods study design we will: 1) interview spokespersons soon after they have made (or report that they made) a surrogate decision and perform an ethnographic analysis; 2) measure their distress from surrogate decision-making, as well as their individual decision-making styles and personality traits using quantitative questionnaires; 3) transform qualitative themes into categories and relate them to the quantitative data (personality trait, decision styles and subjective stress) using a joint display; and 4) integrate these findings with data from the parent R01. From this, we will develop recommendations for tailoring ACP interventions to better meet emotional and other needs of spokespersons. The proposed study takes advantage of a rare and time-sensitive opportunity to acquire highly generalizable knowledge about the ACP needs of spokespersons for patients with serious, advanced illness. Specifically, the spokespersons are already enrolled in the parent R01 study (with an attrition rate of just 6% between study visits); the expected surrogate decisions that will occur during the study period will generate extensive qualitative data that can be integrated with both new and existing data; and the mixed-methods approach will reveal new insights that would not be gained by examining the qualitative and quantitative findings independently. The study will also identify psychological factors that are associated with better outcomes (notably, less distress), which will allow our interdisciplinary team to generate recommendations for tailoring ACP interventions that address emotional needs of spokespersons. Taken together, the proposed study has the potential to greatly improve the efficacy of ACP by helping researchers and clinicians create and implement tailored ACP interventions that are better aligned with the needs of spokespersons –who are called upon to represent severely ill patients and make life-or-death medical decisions when the patients cannot.