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

• 批准号: 8255223
• 负责人: Barbara Daly
• 金额: $ 39.82万
• 依托单位: CASE WESTERN RESERVE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-09-27 至 2013-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8255223
• 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

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. PUBLIC HEALTH RELEVANCE: Decision making about goals of care is particularly challenging for family members of long-stay ICU patients. We lack a full understanding of how families and clinicians determine when it is time to shift from a goal of survival at all costs to treatment plan that emphasizes comfort and preparation for death. This study will be the first to comprehensively study, in the real ICU environment, the multiple interacting factors that determine how these decisions are made.

描述（由申请人提供）：对于迫切需要改善ICU临终关怀（EOL）的交付，有强烈的全国共识。尽管针对特定因素的干预措施进行了数十年的研究和试验，但人们仍然担心长期使用无效疗法会给病人和家属带来痛苦，也会给临床医生带来道德上的困扰。慢性危重患者（CCI）的情况，与急慢性疾病和不确定的预后复杂的接口，提出了特别的挑战，临床医生和家庭代理人试图评估治疗效果，并确定适当的标准和时间过渡到重点姑息和EOL措施。虽然研究影响决策因素的工作越来越多，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善。已有的临床医生和家庭特征和哲学（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著的效果。以前的研究主要集中在有限数量的组成部分或参与者，使用假设的场景或回顾性报告。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从以治疗为导向的治疗转向姑息治疗和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过渡的因素如何相互作用的研究。