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：
9098465
负责人：
Joseph John Gallo
金额：
$ 53.65万
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/9098465
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 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 Thinking Time United States United States National Institutes of Health Universities Vision Work cohort end of life experience follow-up health service use improved journal article loved ones medical schools preference shared decision making social symposium treatment planning young adult

项目摘要

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.

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是从耐心和家庭的角度制成的。我们的建议代表了一个罕见且限时的机会，可以在研究临终决策的研究中解决这些问题，这是约翰·霍普金斯大学医学院的1337名医师毕业生，年龄从71至95岁，生活在整个美国。这项混合方法研究的目的是：（1）评估与在15年的随访间隔内评估与截止日期护理和计划的偏好相关的个人，健康和功能特征和健康服务的使用；（2）评估如何通过个人和专业经验来制定生命终止和计划的偏好和偏好方式；（3）从死亡的参与者中的家庭成员的角度了解寿命终止决策的经验，与前瞻性表达的截止日期护理和计划的偏好有关，以及在生命的最后一年所接受的治疗。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。对于AIM 1，我们采用了潜在的班级过渡模型，研究了与临终关怀和计划的偏好相关的个人特征，并随着时间的推移以及与健康服务的使用相关。在AIM 2中，对于参与者的样本，我们将进行半结构化的访谈，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年内偏爱的偏好背后的理由（例如，通过适合一类偏好，在这种偏好中，最重要的是生命的治疗是对少数人所需的一种偏好。对于AIM 3，我们将使用半结构化的访谈方法来引起家庭成员的叙述，以了解死亡的参与者的临终决策经历。通过允许个人通过叙事来描述决策，我们了解人们如何思考和定义与临床医生和研究人员不同的生活终止护理目标。混合方法研究为参与者通过医疗，功能和社会过渡提供了对生命终止偏好和计划的前所未有的寿命。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以及与谁以及原因。这项研究可以改变公众关于临终关怀和计划的论述。