End of Life Decision Making, Communication and Meaning

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和提供护理方法的不同个体的方式，并了解临终问题和决定。这项研究还将测试一种叙事干预的可行性——一种“道德遗嘱”——旨在提高病人临终前的生活质量。与传统的遗嘱不同，道德遗嘱是一种持久的文件，它以书面遗产的形式表达了个人的价值观、信仰、人生教训、希望、爱和宽恕。拟议的以社区为基础的参与性研究的特点是对15个参与者组进行了一系列深入访谈，每个参与者组由5个人组成：一名患有转移性癌症的未得到充分服务的妇女，以及她的主要非正式照顾者、临终关怀护士、医生和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的是：1)收集和分析有关癌症妇女及其护理人员表达和理解的关于生命终结的信念、担忧、期望和目标的定性数据；2)收集和分析治疗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留住服务不足的晚期癌症妇女以及为她们提供护理的人的可行性。拟议的道德意志干预的目标是通过支持和加强垂死的妇女及其幸存的亲人的意义感，减少痛苦，减轻对死亡的关切和焦虑。在随后的随机对照试验中，我们将探讨伴随伦理遗嘱创建的价值体系的检查是否有次要的好处，包括帮助患者确定最佳护理选择，加强患者与医生的沟通，丰富生命结束时的家庭关系，以及在亲人丧亲期间作为治疗工具的功能。癌症发病率和死亡率的负担不成比例地由低收入妇女，特别是有色人种妇女承担。然而，到目前为止，美国的大多数临终研究主要集中在欧洲裔美国白人、医院或延长护理机构的中产阶级患者身上。我们的定性研究集中在服务不足的社区妇女转移性癌症患者的临终问题、沟通和决策的文化背景。

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.