Precision, Probability, and Uncertainty: Engaging with Experimental Medicine in the Context of Terminal Cancer

• In Event: Rethinking Health Professions in the 21st Century: Innovations, Interruptions, and Regenerations

Abstract

Building on investigations of precision and uncertainty, we analyze clinical trials in the context of terminal cancer. The presentation draws on ethnographic observation of 85 doctor-patient interactions conducted at a university-affiliated cancer clinic in the United States. Although all participants have been informed they have a terminal cancer, we argue that the possibility of enrolling in clinical trails introduces considerable experiential and interactional uncertainty. Here, individuals living with cancer must navigate between transitioning to palliative care or enrolling in a clinical trial that has uncertain and unknowable outcomes. These individuals also encounter a dilemma between potentially extending the duration of their lives while facing substantial side effects (e.g., internal bleeding, seizure). In this presentation, we focus on physicians’ use probabilistic terms, qualified language, and jargon to detail the efficacy and impacts of clinical trial medications. Physicians use variance, probabilities, and epidemiological data to communicate to patients, regardless of whether they are describing the potential of medications to extend life duration or produce debilitating side effects. Despite the seemingly precise quantitative language used in these clinical encounters, individuals living with cancer are unable to discern how an experimental medication will impact their bodies until they enroll in a trial. Building on previous research on quantification and biomedicine, we further argue that the precise and quantitative language used by physicians paradoxically increases uncertainty. We discuss our findings in relation to macro theories of risk and the disjuncture between large-scale quantitative data and individual experiences.

Authors

• Michael Halpin

• Dagoberto Cortez, University of Wisconsin - Madison