Uncertainty and Certain Death: The Role of Clinical Trials in Terminal Cancer Care

• In Event: 3129 - Section on Medical Sociology Refereed Roundtables (1 hour)
  In Refereed Roundtable 60min: Table 15. Home and Hospice Care

Abstract

Building on a tradition of empirical investigations of medical uncertainty, we consider how terminally-ill patients experience uncertainty in relation to experimental medications and clinical trials. While previous studies of medical uncertainty focus on issues of diagnosis, screening, and initial treatment, our paper demonstrates how uncertainty is a feature of medical encounters throughout the illness trajectory and across the life course by emphasizing the salience of uncertainty in regard to the treatment of terminal patients. This paper argues that a major source of uncertainty for terminally ill patients is found in clinical trial medications. Here, individuals confront the choice between transitioning to palliative care or volunteering for an experimental/trial medication that might stave off death. Additionally, patients also have to consider how such experimental treatments might impact their quality-of-life, regardless of whether or not they are efficacious. In this paper, we focus on individuals with terminal non-small cell lung cancer, which is an aggressive and difficult to treat form of cancer. We argue that three aspects of clinical trials create uncertainty in the care of terminally-ill patients: 1) discussions about the efficacy of clinical trials; 2) the physical consequences of clinical trials; and, 3) the impact clinical trials have on patient’s prognostic understanding. Despite encountering high prognostic certainty (i.e., they have a fatal cancer), these patients nonetheless encounter considerable uncertainty in relation to their participation in clinical trials.

Authors

• Dagoberto Cortez, University of Wisconsin-Madison

• Michael Allan Halpin, Dalhousie University