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

描述：为了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会议和2011年由美国国家护理研究所主办的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合并症；(2)探索如何以及为什么从患者和家庭的角度做出治疗决定。我们的建议提供了一个难得的、时间有限的机会来解决这些问题，我们研究了1337名约翰霍普金斯大学医学院的医生毕业生，他们的年龄从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)在15年的随访期间评估个人、健康和功能特征以及与临终关怀和计划偏好相关的卫生服务使用；(2)评估临终关怀和规划的偏好和偏好变化如何受到临终决策的个人和专业经验的影响；(3)从死亡参与者的家庭成员的角度了解临终决策的经历，以及他们对临终关怀和计划的偏好和生命最后一年实际接受的治疗之间的关系。我们采用混合方法，将潜在过渡模型（定量方法）与叙事和主题分析（定性方法）相结合。在目标1中，我们采用潜在类别转换模型，研究与临终关怀和计划偏好相关的个人特征，以及与卫生服务使用的关联。在目标2中，对于参与者样本，我们将进行半结构化访谈，以引出受访者关于治疗目标和临终关怀计划的观点，以及在15年的过程中偏好背后的理由（例如，从适合最可能维持生命的治疗的偏好类别到很少的偏好类别）。在目标3中，我们将使用半结构化的访谈方法，从家庭成员那里获得关于死亡参与者临终决策经历的叙述。通过允许个人通过叙述来描述决策，我们了解到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。混合方法的研究提供了一个前所未有的生命周期的观点，临终的偏好和计划，因为参与者通过医疗，功能和社会转变。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，与谁一起做出决定，以及为什么。该研究可以改变公众对临终关怀和计划的讨论。

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.