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

描述：针对美国临终关怀的质量问题，2004年NIH关于改善临终关怀的科学会议和由国家护理研究所赞助的2011年同情科学峰会描述了对以下研究的迫切需求：(1)超越单一疾病的横断面方法，在已建立的队列纵向研究中使用混合方法来检查复杂的并存疾病；(2)探索从患者和家庭的角度如何及为什么做出治疗决定。我们的建议是一个难得的、时间有限的机会，可以在一项关于约翰·霍普金斯大学医学院1337名医生毕业生的临终决策研究中解决这些问题，这些毕业生的年龄从71岁到95岁不等，生活在美国各地。这项混合方法研究的目的是：(1)评估个人、健康和功能特征以及在15年随访期间与临终关怀和规划偏好相关的卫生服务使用情况；(2)评估临终关怀和规划偏好和偏好的变化是如何由个人和专业的临终决策经验形成的；以及，(3)从死者家庭成员的角度了解临终决策的经历，以及与预期表达的临终护理和规划偏好以及在生命最后一年实际接受的治疗有关的情况。我们采用了混合的方法，将潜在转换模型(定量方法)与叙事和主题分析(定性方法)相结合。对于目标1，我们使用潜在的阶级转变模型来检验与生命末期护理和计划随时间的偏好相关联的个人特征以及与卫生服务使用的关联。在目标2中，我们将对参与者样本进行半结构化访谈，以得出受访者对治疗目标和临终关怀规划的观点，以及15年来偏好背后的理由(例如，从符合最有可能维持生命的治疗所需的偏好类别，到符合很少需要的偏好类别)。对于目标3，我们将使用半结构化访谈方法，从家庭成员那里获得关于已经死亡的参与者的临终决策经历的叙述。通过允许个人通过叙事描述决策过程，我们了解了人们如何思考和定义自己的临终关怀目标，这与临床医生和研究人员不同。这项混合方法研究在参与者经历医疗、功能和社会转型时，对临终偏好和规划提供了前所未有的生命跨度视角。我们将以其他研究不可能的方式了解老年人将如何选择做出决定，与谁一起做出决定，以及为什么做出决定。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.