Mapping the Complexity of End of Life Transitions in Chronically Critically Ill

绘制慢性危重病患者临终过渡的复杂性

基本信息

批准号：
8339892
负责人：
Barbara Daly
金额：
$ 40.63万
依托单位：
CASE WESTERN RESERVE UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2011
资助国家：
美国
起止时间：
2011-09-27 至 2014-07-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8339892
关键词：
Accounting Acute Caring Cessation of life Characteristics Chronic Clinical Communication Complex Conflict (Psychology)Consensus Critical Illness Decision Making Distress Effectiveness Elements Environment Equation Evaluation Family Family Characteristics Family member Goals Health Personnel Hospital Mortality Human Intervention Intervention Trial Investigation Maps Measures Mechanical ventilation Modeling Morals Nature Outcome Participant Patients Pattern Physicians Population Preparation Process Quality of life Religious Belief Religious Philosophies Reporting Research Resistance Risk Science System Testing Time Translations Treatment Effectiveness Ursidae Family Work care systems cost design end of life expectation functional status health related quality of life improved insight model design novel strategies outcome forecast palliation palliative treatment planning

项目摘要

DESCRIPTION (provided by applicant): There is strong national consensus about the pressing need to improve the delivery of end of life (EOL) care in the ICU. Despite decades of study and tests of interventions targeting specific elements, there continue to be concerns about prolonged use of ineffective therapies, resulting in suffering of both patients and families, as wel as moral distress of clinicians. The situation of chronically critically ill patients (CCI), with te complex interface of acute-on-chronic conditions and uncertain prognoses, presents particular challenges to clinicians and family surrogates in attempting to assess treatment effectiveness and identify the appropriate criteria and time for transitioning to a focus on palliation and EOL measures. While there is a growing body of work examining factors that influence decision making, the challenges faced by families and clinicians caring for CCI patients have been somewhat resistant to major improvements. Pre-existing clinician and family characteristics and philosophies (religious, cultural, personal), actual clinical trajectory of patient condition, expectations of likely outcomes, and evaluation of the effectiveness of treatment have all been shown to be relevant to decision making patterns. However, major intervention trials have failed to demonstrate significant gains. Previous studies have focused on a limited number of components or participants, using hypothetical scenarios or retrospective reports. In contrast, we will follow the natural trajectory of illness and decision making, which will allow us to examine the decision making system and factors influencing transitions or the lack of transitions from cure-oriented therapies to palliative and EOL interventions in the CCI. The proposed investigation will shift the current research paradigm in being the first to apply the principles o complexity science in examining how factors that influence transitions in actual practice interact. This will allow us to detect changes over time, and to account for relationships among various elements, such as religious beliefs of family surrogates, patient characteristics, and salient clue used by clinicians to trigger changes in goals. This will yield both a more accurate understanding of the phenomenon of transitions in the care of CCI, as well as new targets for intervention and guidance for tailored approaches. The primary aims are: (1) Examine the extent to which transitions to EOL care are predicted indirectly by characteristics (patient, clinician, family) and clinical triggers, and directly by outcome expectations (MD, family) and evaluation of treatment effectiveness; (2) Examine the extent to which evaluation of treatment effectiveness is predicted by characteristics (patient, clinician), outcome expectations (MD, family), and clinical triggers; (3) Examine the extent to which physician outcome expectations (survival, functional status, health related quality of life [HRQOL]) are predicted by physician characteristics, patient characteristics, and clinical triggers; (4) Examine the extent to which family outcome expectations (survival, functional status, HRQOL) are predicted by physician outcome expectations, family characteristics, and patient characteristics.

描述（由申请人提供）：对于改善 ICU 临终 (EOL) 护理服务的迫切需要，全国达成了强烈共识。尽管针对特定因素的干预措施进行了数十年的研究和测试，但人们仍然担心长期使用无效的疗法，导致患者和家庭的痛苦，以及临床医生的道德困境。慢性危重症患者 (CCI) 的情况，慢性病急性发作的复杂界面和不确定的预后，对临床医生和家庭代理人在试图评估治疗效果并确定适当的标准和过渡时间时提出了特殊的挑战。重点关注姑息治疗和 EOL 措施。尽管越来越多的工作正在研究影响决策的因素，但照顾 CCI 患者的家庭和临床医生所面临的挑战在一定程度上阻碍了重大改进。已有的临床医生和家庭特征以及哲学（宗教、文化、个人）、患者病情的实际临床轨迹、对可能结果的期望以及对治疗有效性的评估都已被证明与决策模式相关。然而，主要的干预试验未能显示出显着的效果。以前的研究使用假设情景或回顾性报告，重点关注有限数量的组成部分或参与者。相比之下，我们将遵循疾病和决策的自然轨迹，这将使我们能够检查决策系统和影响 CCI 中从以治愈为导向的治疗到姑息治疗和 EOL 干预的过渡或缺乏过渡的因素。拟议的调查将改变当前的研究范式，成为第一个应用复杂性科学原理来研究影响实际实践中转变的因素如何相互作用的研究范式。这将使我们能够检测随着时间的推移发生的变化，并解释各种因素之间的关系，例如家庭代理人的宗教信仰、患者特征以及临床医生用来触发目标变化的显着线索。这将使人们更准确地了解 CCI 护理中的转变现象，并为干预措施和定制方法提供新的指导。主要目标是：（1）检查通过特征（患者、临床医生、家庭）和临床触发因素间接预测向 EOL 护理过渡的程度，以及通过结果预期（医学博士、家庭）和治疗效果评估直接预测的程度； (2) 检查根据特征（患者、临床医生）、结果预期（MD、家庭）和临床触发因素预测治疗效果评估的程度； (3) 检查医生特征、患者特征和临床触发因素预测医生结果预期（生存、功能状态、健康相关生活质量 [HRQOL]）的程度； (4) 检查医生结果预期、家庭特征和患者特征对家庭结果预期（生存、功能状态、HRQOL）的预测程度。