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

描述(由申请人提供)：关于改善ICU中临终关怀(EOL)护理的迫切需要，有强烈的国家共识。尽管几十年来对针对特定因素的干预措施进行了研究和测试，但人们仍然担心长期使用无效的治疗方法，导致患者和家属遭受痛苦，以及临床医生的精神痛苦。慢性危重病患者(CCI)的情况具有复杂的急慢性疾病界面和不确定的预后，这对临床医生和家庭代理人提出了特别的挑战，试图评估治疗效果并确定适当的标准和时间以过渡到侧重于缓解和EOL措施。虽然研究影响决策的因素的工作越来越多，但照顾CCI患者的家庭和临床医生面临的挑战在某种程度上抵制了重大改进。先前存在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、对可能结果的预期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著的进展。以前的研究使用假设情景或回顾报告，集中在有限数量的组件或参与者上。相反，我们将跟踪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性和EOL干预的过渡或缺乏过渡的因素。拟议的调查将改变目前的研究范式，第一次应用复杂性科学的原理来研究影响实际实践中的转变的因素是如何相互作用的。 这将使我们能够发现随着时间的推移而发生的变化，并解释各种因素之间的关系，例如家庭代孕的宗教信仰、患者特征以及临床医生用来触发目标变化的显著线索。这将产生对CCI护理过渡现象的更准确理解，以及为干预和指导量身定做的方法制定新的目标。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过渡到EOL护理的程度，以及直接通过结果预期(MD、家庭)和治疗效果评估来预测；(2)检查通过特征(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)检查医生结果预期(生存、功能状态、与健康相关的生活质量[HRQOL])由医生特征、患者特征和临床触发因素预测的程度；(4)检查家庭结果预期(生存、功能状态、HRQOL)在多大程度上受到医生结果预期、家庭特征和患者特征的预测。 公共卫生相关性：对长期入住ICU患者的家属来说，有关护理目标的决策尤其具有挑战性。我们缺乏对家庭和临床医生如何确定何时从不惜一切代价生存的目标转向强调舒适和为死亡做好准备的治疗计划的充分理解。这项研究将首次在真实的ICU环境中全面研究决定这些决定如何做出的多种相互作用的因素。

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.