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、探索性研究将考察未得到充分服务的癌症妇女以及提供护理方法并了解临终问题和决定的不同个人的方式。这项研究还将测试叙事干预的可行性--一种“伦理意愿”--旨在改善患者生命末期的质量。与转移世俗财产的传统遗嘱不同，道德遗嘱是一种持久的文件，以书面遗产的形式表达个人的价值观、信仰、生活教训、希望、爱和宽恕。拟议的社区参与性研究包括对15个参与小组进行一系列深入访谈，每个小组由5个人组成：一名转移性癌症患者，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(共75名参与者)。这项研究的主要具体目标是：1)收集和分析关于未得到充分服务的癌症患者和提供其护理的妇女表达和理解的关于临终的信念、关切、期望和目标的定性数据；2)收集和分析关于未得到充分服务的转移性癌症妇女和提供其护理的妇女之间关于临终问题和决定的沟通的定性数据；以及3)开发和试点测试伦理意愿叙事干预，这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得不到充分服务的癌症临终妇女和那些为她们提供护理的妇女的可行性。拟议的伦理意志干预的目标是通过支持和加强临终妇女及其幸存的亲人的意义意识，减少痛苦，缓解对死亡的担忧和焦虑。在随后的随机对照研究中，我们将探讨伴随着道德意志的建立而进行的价值体系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，在生命结束时丰富家庭关系，以及在失去亲人期间充当治愈亲人的工具。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医院或扩展护理机构中的欧洲美国白人、中产阶级患者。我们的定性研究集中在未得到充分服务的、居住在社区的转移性癌症妇女的临终问题、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.