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

谈到美国临终关怀的质量，2004年美国国立卫生研究院科学会议 改善临终关怀与2011年国家慈悲科学峰会 护理研究所描述了对以下研究的迫切需要：(1)超越单一疾病的交叉- 在纵向研究中使用混合方法检查复杂合并症的分段方法 建立队列和(2)探索患者和家属如何以及为什么做出治疗决定 透视。我们的建议是一个难得的、有时间限制的机会，可以在一项关于 约翰霍普金斯大学医学院1337名医科毕业生的临终决策 年龄从71岁到95岁不等的医学，生活在美国各地。 这项混合方法研究的目的是： (1)评估与以下各项相关的个人、健康和功能特征以及健康服务使用 对15年随访期间的临终关怀和规划的偏好； (2)评估如何形成对临终关怀和规划的偏好和偏好的变化 与临终决策有关的个人和专业经验；以及 (3)从家庭成员的角度了解临终决策的经历 在死亡的参与者中，关于临终关怀和规划的偏好表示 预期和在生命的最后一年实际接受的治疗。 我们采用了混合的方法，将潜在的转变模型(量化方法)与叙事和 专题分析(定性方法)。对于目标1，我们使用了潜在的类转移模型检验 与随时间推移对临终关怀和规划的偏好相关的个人特征 与卫生服务使用有关。在目标2中，我们将对参与者样本进行半结构化 访谈以了解被调查者对治疗目标和临终关怀规划的看法，以及 15年来偏好背后的基本原理(例如，从符合以下类别的偏好 最有可能维持生命的治疗是少数人所希望的)。对于目标3，我们将使用Semi- 结构化访谈方法，从家庭成员那里获得关于临终经历的叙述 在已经死亡的参与者中进行决策。通过允许个人描述决策制定 通过叙事，我们了解到人们如何以不同的方式思考和定义自己的临终关怀目标 而不是临床医生和研究人员。这项混合方法研究提供了前所未有的生命周期视角 在参与者经历医疗、功能和社会转型时的临终偏好和规划。 我们将以在其他研究中不可能的方式了解老年人将如何选择做出决定和 和谁，为什么。这项研究可以改变公众对临终关怀和规划的讨论。

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.