Doctoral Dissertation Improvement Grant: Sociocultural Analysis of Expectation and Decision Making by the Critically Ill

研究生肖娜·克莱本·鲍尔斯将在卡罗琳·萨金特博士的指导下，研究新技术如何在个人及其社交网络层面融入现有的社会、文化和道德准则。她将调查有资格接受姑息治疗的危重患者是如何在美国医院的生命末期形成期望和做出决定的。在生物医学机构，生物技术现在使患者能够在限制生命的情况下比以往任何时候活得更长，但也给无法治愈的患者带来焦虑和冲突，他们必须面对对积极结果的文化塑造的期望与失去希望之间的矛盾。这项研究将有助于理解患者如何通过技术创新创造的这一领域。有两个首要目标(1)检查影响患者及其网络如何使用希望和否认的构建来制定对未来的期望的特定因素；2)了解临床医生、患者及其网络之间如何协商决策权，以及当对最合适的治疗计划存在分歧时会发生什么。作为一项自然的实验，研究设计将与姑息治疗团队互动的患者与不与之互动的患者进行比较。研究人员将通过参与观察、决策分析、对患者、患者社交网络中的人和临床医生的采访来收集信息，以提供多种视角。中心研究问题包括：对住院结果的预期是如何产生的，并随着时间的推移而变化？在生命的尽头，希望和拒绝如何塑造人们的期望和决定？在整个住院过程中，希望和否认是如何演变和改变的？姑息治疗实践如何影响这些过程？这项研究将有助于社会科学理解新技术如何融入社会和文化系统。具体地说，它将进一步加深对紧急期望的形成、生物医学知识的社会结构以及技术对危重患者患病经历的影响的理论理解。这项研究还将有助于了解不同文化和种族的危重患者及其社会网络的需求，这些群体的声音往往得不到充分代表。关注从根治疗法到姑息疗法的转变，将揭示在生命结束时塑造预期和决定的因素。这些体制、社会和文化因素，特别是那些可能在提供姑息治疗方面引发道德困境的因素，将决定提供姑息治疗的护理标准和做法，并因此对公共政策产生影响。

Graduate student Shauna Claiborne Bowers, supervised by Dr. Carolyn Sargent, will undertake research on how new technologies are incorporated at the level of the individual and their social networks into extant social, cultural, and ethical codes. She will investigate how critically ill patients, who are eligible for palliative care, form expectations and make decisions at the end of life in a United States hospital. In biomedical institutions, biotechnologies now enable individuals to live longer than ever with life-limiting conditions, but also generate anxiety and conflict for patients who cannot be cured and must confront the contradiction between culturally shaped expectations for a positive outcome and the loss of hope. This research will help to understand how patients negotiate this terrain created by technological innovation.There are two overarching objectives (1) to examine the specific factors that influence how patients and their networks use constructions of hope and denial to formulate expectations for the future; and 2) to understand how decision making power is negotiated between clinicians, patients, and their networks, and what happens when there is disagreement about the most appropriate plan of treatment. As a natural experiment, the research design compares patients who interact with the palliative care team with those who do not. The researcher will collect information through participant observation, decision analyses, interviews with patients, people in patients' social networks, and clinicians, to provide multiple perspectives. Central research questions include: How do expectations for the outcome of hospitalization emerge and change over time? How do hope and denial shape expectations and decisions at the end of life? How do hope and denial evolve and change throughout hospitalization? How do palliative care practices influence these processes? The research will contribute to social scientific understanding of how new technologies become incorporated in social and cultural systems. Specifically, it will further theoretical understandings of the formation of emergent expectation, the social construction of biomedical knowledge, and the technology influenced illness experiences of critically ill individuals. This research also will contribute to understanding the needs of culturally and ethnically diverse critically ill patients and their social networks, groups whose voices are often underrepresented. Focusing on transitions from curative to palliative treatments will reveal factors that shape expectations and decisions at the end of life. These institutional, social, and cultural factors, especially those which may provoke ethical dilemmas in the delivery of palliative care, will inform standards of care and practices in delivery of palliative care and, therefore, have implications for public policy.