Identifying Effective Strategies to Disclose Prognosis in Patients with ARDS

描述(由申请人提供)：尽管最近在治疗方面取得了进展，但30%-40%的急性肺损伤(ALI)患者无法存活。美国关于临终关怀的30年研究表明，在重症监护病房死亡的美国人通常会在生命的最后几天接受他们不会选择的维持生命的治疗。其中一个原因是，作为代孕决策者的家庭经常不了解患者的预后有多差。这一问题对以病人为中心的临终关怀和卫生保健资源的有效利用都产生了负面影响。不幸的是，没有实证研究解决什么披露策略有效地向危重患者家属传达预后不良的消息。这项研究计划的长期目标是通过循证干预措施的开发和测试，改善具有高死亡风险或严重功能障碍的急性呼吸衰竭患者的预后决策和沟通。在拟议的研究中，我们解决了限制我们制定此类干预措施的能力的知识中的三个关键差距。目的1：确定有效地向危重患者家属传达预后信息的披露策略。目的2：确定家庭对预后的误解在多大程度上与死前长期使用维持生命治疗有关。目的3：确定在危重疾病的背景下，医生和家庭对如何传达预后的看法，以及改变医生在这方面的行为的障碍。我们将利用ARDS临床研究网络的基础设施，对175例ALI急性呼吸衰竭患者的预后进行前瞻性队列研究。我们将录制医生-家庭会议的录音，并对医生如何披露预后进行量化编码。我们将在这些会议后从医生和家属那里获得定量的预后评估，并使用多变量方法来确定有效传达预后信息的策略。我们将对30名医生和60名家庭成员进行半结构化访谈，以了解披露预后不良消息的策略。这项研究意义重大，因为它将提供有关有效和可接受的预后沟通方法的新信息，以及对预后沟通不良与更多使用维持生命治疗相关程度的估计。这项研究具有创新性，因为我们将结合定量和定性的方法，我们的团队开发的新的测量工具，以及一个多学科的研究团队来研究关于预后的沟通。这些见解将使我们能够开发有针对性的干预措施，以改善急性呼吸衰竭患者的护理。与公共卫生相关：在美国，20%的死亡发生在重症监护病房(ICU)或在此之后不久，在这种环境下，提供高科技、昂贵的护理。家庭经常被要求参与是否继续维持生命治疗的决定，但许多家庭与临床医生沟通不足，不了解患者的预后，使这些决定变得困难。拟议的研究结果将提供有关有效和可接受的战略的信息，以向危重患者的家人披露预后不良的消息。这些见解将使我们能够开发一种干预措施，以改善与急性呼吸衰竭患者预后的沟通。

DESCRIPTION (provided by applicant): Despite recent advances in treatment, 30-40% of patients with acute lung injury (ALI) do not survive. Three decades of research on end-of-life care in the United States indicates that Americans dying in intensive care units often spend their final days receiving life sustaining treatment they would not choose. One reason for this is that family who are acting as surrogate decision-makers frequently do not understand how poor a patient's prognosis is. This problem has negative effects on both patient-centered care at the end-of-life and also on effective use of health care resources. Unfortunately, no empirical studies have addressed what disclosure strategies effectively convey news of a poor prognosis to family of critically ill patients. The long-term goal of this research program is to improve decision-making and communication about prognosis for patients with acute respiratory failure at high risk of death or severe functional impairment through the development and testing of evidence-based interventions. In the proposed research, we address 3 critical gaps in knowledge that limit our ability to develop such interventions. Aim 1: to identify disclosure strategies that effectively convey prognostic information to family of critically ill patients. Aim 2: to determine the extent to which families' misperceptions about prognosis are associated with prolonged use of life-sustaining treatments before death. Aim 3: to determine physicians' and families' perceptions about how prognosis should be communicated in the setting of critical illness, and the barriers to changing physicians' behavior in this regard. We will use the infrastructure of the ARDS Clinical Research Network to conduct a prospective cohort study of communication about prognosis for 175 patients with acute respiratory failure from ALI. We will audiotape physician-family conferences and quantitatively code how physicians disclose prognosis. We will elicit quantitative prognostic estimates from physicians and families after these conferences, and use multivariate methods to identify strategies that effectively convey prognostic information. We will conduct semi-structured interviews with 30 physicians and 60 family members regarding strategies to disclose news of a poor prognosis. The research is significant because it will provide new information about effective and acceptable methods to communicate about prognosis as well as an estimate of the extent to which poor communication about prognosis is associated with more use of life-sustaining treatment. This research is innovative because we will combine quantitative and qualitative methods, new measurement tools developed by our group, and a multidisciplinary research team to study communication about prognosis. These insights will allow us to develop a targeted intervention to improve the care of patients with acute respiratory failure. PUBLIC HEALTH RELEVANCE: Twenty percent of deaths in the US occur in or shortly after a stay in an intensive care unit (ICU), a setting in which highly technological, expensive care is delivered. Families are often asked to participate in decisions about whether to continue life-sustaining treatment, but many families experience inadequate communication with clinicians and do not understand the patient's prognosis, making these decisions difficult. The results of the proposed study will provide information about effective and acceptable strategies to disclose news of a poor prognosis to family members of critically ill patients. These insights will allow us to develop an intervention to improve communication about prognosis for patients with acute respiratory failure.