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

临终决策：混合方法研究

基本信息

批准号：
8601364
负责人：
Joseph John Gallo
金额：
$ 46.14万
依托单位：
JOHNS HOPKINS UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2014
资助国家：
美国
起止时间：
2014-09-28 至 2018-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8601364
关键词：
Address Advance Directives Advanced Malignant Neoplasm Age Amyotrophic Lateral Sclerosis Attention Behavioral Caring Categories Characteristics Clinical Comorbidity Compassion Complex Data Decision Making Discipline of Nursing Disease Elderly Family Family Caregiver Family member Goals Health Health Services Health system Healthcare Power of Attorney Heart failure Individual Institutes Interview Knowledge Learning Life Life Cycle Stages Living Wills Longevity Longitudinal Studies Medical Medical Students Methods Modeling National Institute of Nursing Research Participant Patient Preferences Patients Pattern Physicians Physiological Psychosocial Factor Published Comment Qualitative Methods Quality of Care Research Personnel Respondent Sampling Science Shapes Spouses Structure Time United States United States National Institutes of Health Universities Vision Work cohort end of life experience follow-up improved journal article loved ones medical schools preference public health relevance shared decision making social symposium treatment planning young adult

项目摘要

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.

解决美国生命末期的护理质量，2004年NIH科学会议改善了临终关怀和2011年关于国家同情科学的峰会护理研究所描述了迫切需要：（1）超越单一疾病跨使用混合方法在检查复杂的合并症中的分段方法已建立的队列和（2）探讨如何以及为什么由患者和家人做出治疗决定观点。我们的提议代表了在研究中解决这些问题的罕见且限时的机会约翰·霍普金斯大学学院的1337名医师毕业生的临终决策医学年龄从71岁到95岁不等，整个美国生活。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与在15年的随访时间间隔期间，对临终关怀和计划的偏好；（2）评估偏好和偏好终止护理和计划的偏好如何由个人和专业经验以及临终决策；和，（3）从家庭成员的角度了解寿命终止决策的经验在死亡的参与者中，与表达的截止日期护理和计划的偏好有关前瞻性，对治疗实际上在生命的最后一年接受。我们采用混合方法，将潜在过渡模型（定量方法）与叙述和主题分析（定性方法）。对于AIM 1，我们采用潜在的班级过渡模型检查随着时间的推移，与临终关怀和计划的偏好相关的个人特征与卫生服务的关联使用。在AIM 2中，对于参与者的样本，我们将进行半结构化采访以引起受访者关于治疗和计划终止护理的目标的观点，以及在15年中，偏好背后的基本原理（例如，适合一类偏好最有可能的治疗方法是少数人的一种。对于AIM 3，我们将使用半结构化的访谈方法，以引起家庭成员的叙述有关寿命末的经历死亡的参与者之间的决策。通过允许个人描述决策通过叙述，我们了解人们如何思考和定义自己的临终关怀目标比临床医生和研究人员。混合方法研究提供了前所未有的寿命的观点参与者通过医疗，功能和社会过渡的临终偏好和计划。在其他研究中，我们将以某种方式学习老年人如何选择做出决定的方式和与谁以及原因。这项研究可以改变公众关于临终关怀和计划的论述。