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）：关于改善ICU生命终结（EOL）护理的迫切需求，有很强的国家共识。尽管进行了数十年的研究和针对特定元素的干预措施的测试，但仍为长期使用无效的疗法，导致患者和家庭遭受痛苦，就像临床医生的道德困扰一样。慢性病患者（CCI）的状况，具有急性智力疾病的复杂界面和不确定的预后，对临床医生和家庭代理人提出了特殊的挑战。虽然越来越多的工作检查影响决策的因素，但照顾CCI患者的家庭和临床医生面临的挑战对重大改善有所抵抗。现有的临床医生和家庭特征和哲学（宗教，文化，个人），患者状况的实际临床轨迹，对可能结果的期望以及对治疗有效性的评估都与决策模式有关。但是，重大干预试验未能显示出显着的收益。 先前的研究使用假设的情况或回顾性报告集中在有限数量的组件或参与者上。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影响过渡的决策系统以及因治疗疗法的过渡到CCI的姑息治疗和EOL干预的过渡。拟议的调查将改变当前的研究范式，成为第一个应用原理o复杂性科学在研究影响实际实践中过渡的因素如何相互作用时的原理的人。 这将使我们能够随着时间的流逝来检测变化，并说明各种因素之间的关系，例如家庭代理人的宗教信仰，患者特征和临床医生使用的显着线索，以触发目标的变化。这将对CCI护理中过渡现象以及干预的新目标和针对量身定制方法的指导产生更准确的理解。主要目的是：（1）检查通过特征（患者，临床医生，家庭）和临床触发者间接预测向EOL护理的过渡，以及直接通过结果预期（MD，家庭）和治疗效率评估； （2）检查特征（患者，临床医生），结果期望（MD，家庭）和临床触发器的特征（患者，临床医生）预测治疗有效性的程度； （3）检查医师预期的预期（生存状况，与健康相关的生活质量[HRQOL]）在多大程度上由医师特征，患者特征和临床触发者预测； （4）检查家庭结果期望（生存，功能状况，HRQOL）在多大程度上由医师结果期望，家庭特征和患者特征预测。 公共卫生相关性：关于护理目标的决策对于长期ICU患者的家庭成员特别具有挑战性。我们对家庭和临床医生如何确定何时将不惜一切代价的生存目标转变为强调舒适和为死亡做准备的治疗计划的全面了解。这项研究将是第一个在实际的ICU环境中全面研究决定这些决策方式的多个相互作用因素。