End of Life Decision Making, Communication and Meaning

临终决策、沟通和意义

• 批准号: 7491742
• 负责人: SHELLEY R ADLER
• 金额: $ 15.24万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2007
• 资助国家: 美国
• 起止时间: 2007-09-01 至 2010-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7491742
• 关键词: American; Anxiety; Area; Back; Belief; Bereavement; Businesses; Cancer Burden; Caregivers; Caring; Cessation of life; Class; Clinical Trials; Collection; Color; Communication; Communities; Complementary and alternative medicine; Data; Decision Making; Depth; Development; Disseminated Malignant Neoplasm; European; Evaluation; Facility Construction Funding Category; Family Relationship; Fright; Future; Goals; Grief reaction; Healed; Health Professional; Hospitals; Human; Individual; Intervention; Interview; Life; Life Experience; Love; Low income; Malignant Neoplasms; Methods; Morbidity - disease rate; Palliative Care Nursing; Participant; Patients; Persons; Physicians; Preparation; Prospective Studies; Purpose; Qualitative Research; Randomized; Recruitment Activity; Research; Series; Skilled Nursing Facilities; System; Testing; Therapeutic Effect; United States; Woman; Writing; base; community based participatory research; design; end of life; expectation; forgiveness; healing; improved; interest; mortality; research study; tool

DESCRIPTION (provided by applicant): This two-year qualitative, anthropological, exploratory study will examine the ways in which underserved women with cancer and the diverse individuals who provide their care approach and understand end-of-life issues and decisions. The study will also test the feasibility of a narrative intervention-an "ethical will"- intended to improve the quality of the patients' end of life. Unlike conventional wills, which transfer worldly possessions, an ethical will is an enduring document that expresses an individual's values, beliefs, life lessons, hopes, love, and forgiveness in the form of a written legacy. The proposed community-based participatory research study features a series of in-depth interviews with 15 participant groups, each of which consists of five individuals: an underserved woman with metastatic cancer, as well as her main informal caregiver, hospice nurse, physician, and complementary and alternative medicine practitioner (for a total of 75 participants). The primary specific aims of the study are: 1) the collection and analysis of qualitative data on the beliefs, concerns, expectations, and goals regarding the end of life as expressed and understood by underserved women with cancer and those providing their care; 2) the collection and analysis of qualitative data on communication about end-of-life issues and decisions among underserved women with metastatic cancer and those providing their care; and 3) the development and pilot testing of an ethical will narrative intervention, which will be evaluated in a subsequent RCT. A secondary aim is to determine the feasibility of recruiting and retaining underserved women with cancer at the end of life and those who provide their care. The goal of the proposed ethical will intervention is to decrease suffering and to ease concerns and anxiety regarding death by supporting and strengthening dying women's and their surviving loved ones' sense of meaning. In the subsequent RCT, we will explore whether the examination of value systems that accompanies the creation of an ethical will has secondary benefits, including helping patients identify best care choices, enhancing patient-practitioner communication, enriching family relationships at the end of life, and functioning as a healing tool for loved ones during bereavement. The burden of cancer morbidity and mortality is disproportionately borne by low-income women, particularly women of color. The majority of end-of-life research in the United States to date, however, has focused primarily on white European American, middle class patients in hospitals or extended care facilities. Our qualitative study focuses on the cultural contexts of end-of-life issues, communication, and decision making among underserved, community-dwelling women with metastatic cancer.

描述（由申请人提供）：这项为期两年的定性、人类学、探索性研究将研究服务不足的癌症女性以及提供护理方法和理解临终问题和决定的不同个人的方式。该研究还将测试旨在提高患者临终质量的叙事干预（“道德意愿”）的可行性。与转移世俗财产的传统遗嘱不同，道德遗嘱是一份持久的文件，以书面遗产的形式表达个人的价值观、信仰、人生教训、希望、爱和宽恕。拟议的基于社区的参与性研究对 15 个参与者组进行了一系列深入访谈，每个组由 5 个人组成：一名服务不足的转移性癌症女性，以及她的主要非正式护理人员、临终关怀护士、医生以及补充和替代医学从业者（总共 75 名参与者）。该研究的主要具体目标是：1) 收集和分析服务不足的癌症女性及其护理人员对生命终结的信念、担忧、期望和目标的定性数据； 2) 收集和分析关于服务不足的转移性癌症妇女及其护理人员关于临终问题和决定的沟通的定性数据； 3）道德意志叙事干预的开发和试点测试，将在随后的随机对照试验中进行评估。第二个目标是确定招募和保留服务不足的临终癌症女性以及为她们提供护理的人员的可行性。拟议的道德意志干预的目标是通过支持和加强临终妇女及其幸存亲人的意义感来减少痛苦并缓解对死亡的担忧和焦虑。在随后的随机对照试验中，我们将探讨伴随着道德遗嘱的创建而对价值体系进行检查是否具有次要益处，包括帮助患者确定最佳护理选择、加强患者与从业者的沟通、丰富临终时的家庭关系，以及在丧亲期间作为亲人的治疗工具。癌症发病率和死亡率的负担不成比例地由低收入女性，特别是有色人种女性承担。然而，迄今为止，美国的大多数临终研究主要集中在医院或延伸护理机构中的欧洲裔美国人、中产阶级患者。我们的定性研究重点关注服务不足的社区居住的转移性癌症女性的临终问题、沟通和决策的文化背景。