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.
