Decision Making at the End of Life: A Mixed Methods Study

描述：解决美国临终关怀的质量问题，2004年美国国立卫生研究院关于改善临终关怀的科学状态会议和2011年由国家护理研究所主办的关于心脏病科学的峰会描述了对以下研究的迫切需求：（1）超越单一疾病横断面方法，在已建立队列的纵向研究中使用混合方法检查复杂的合并症，以及（2）探讨如何以及为什么从病人和家庭的角度作出治疗决定。我们的建议代表了一个罕见的和时间有限的机会，以解决这些问题，在一个队列的1337名医生毕业生的约翰霍普金斯大学医学院的生命结束决策的研究，年龄从71岁到95岁，生活在美国各地。这项混合方法研究的目的是：（1）在15年的随访期间，评估与临终关怀和计划偏好相关的个人、健康和功能特征以及卫生服务使用情况;（2）评估临终关怀和计划偏好和偏好变化如何受到个人和专业经验的影响。以及（3）从死亡参与者的家庭成员的角度了解临终决策的经验，与预期表达的临终护理和计划的偏好以及生命最后一年实际接受的治疗有关。我们采用混合的方法，结合潜在的过渡模型（定量方法）与叙事和主题分析（定性方法）。对于目标1，我们采用了潜在的阶级过渡模型，研究与临终关怀的偏好和规划随着时间的推移，并与卫生服务的使用相关的个人特征。在目标2中，对于参与者样本，我们将进行半结构化访谈，以了解受访者对治疗目标和临终关怀计划的观点，以及15年来偏好背后的理由（例如，从拟合期望最有可能维持生命的治疗的偏好类别到期望很少的偏好类别）。对于目标3，我们将使用半结构化访谈方法，从死亡参与者的家庭成员中获得关于临终决策经历的叙述。通过允许个人通过叙述描述决策，我们了解人们如何思考和定义自己的目标，与临床医生和研究人员不同的临终关怀。混合方法的研究提供了一个前所未有的寿命的角度对临终的偏好和规划，参与者通过医疗，功能和社会过渡。我们将以一种在其他研究中不可能的方式了解老年人如何选择做出决定，以及与谁以及为什么。这项研究可以改变公众对临终关怀和规划的讨论。

DESCRIPTION: Addressing the quality of care at the end of life in the U.S., the 2004 NIH State of the Science Conference on Improving End-of-Life Care and the 2011 Summit on the Science of Compassion sponsored by the National Institute of Nursing Research describe an urgent need for studies that: (1) go beyond a single disease cross- sectional approach to use mixed methods in examining complex co-morbidities in longitudinal studies of established cohorts and (2) explore how and why treatment decisions are made from patient and family perspectives. Our proposal represents a rare and time-limited opportunity to address these issues in a study of end-of-life decision making in a cohort of 1337 physician graduates of The Johns Hopkins University School of Medicine ranging in age from 71 to 95 years and living throughout the United States. The aims of this mixed methods study are: (1) to assess personal, health, and functional characteristics and health service use associated with preferences for end-of-life care and planning over the course of a 15-year follow-up interval; (2) to assess how preferences and change in preferences for end-of-life care and planning are shaped by personal and professional experiences with end-of-life decision making; and, (3) to understand the experience of end-of-life decision making from the point of view of family members among participants who died, in relation to preferences for end-of-life care and planning expressed prospectively and to treatment actually received in the last year of life. We employ mixed methods, combining the latent transition model (quantitative methods) with narrative and thematic analyses (qualitative methods). For Aim 1, we employ the latent class transition model examining personal characteristics associated with preferences for end-of-life care and planning over time and association with health services use. In Aim 2, for a sample of participants we will carry out semi-structured interviews to elicit the respondent's point of view about goals of treatment and planning for end-of-life care, and rationale behind preferences over the course of 15 years (e.g., from fitting a category of preferences in which most potentially life-sustaining treatments are desired to one in which few are). For Aim 3, we will use semi- structured interview methods to elicit narratives from family members about experiences with end-of-life decision-making among participants who have died. By allowing individuals to describe decision making through narrative, we learn how people think about and define their own goals for end-of-life care differently than clinicians and researchers. The mixed methods study provides an unprecedented life span perspective on end-of-life preferences and planning as participants pass through medical, functional, and social transitions. We will learn in a way not possible in other studies how older adults would chose to have decisions made and with whom, and why. The study can change the public discourse on end-of-life care and planning.