We consider uncertainty in relation to clinical trials for terminal non-small cell lung cancer, which is an aggressive and difficult to treat form of cancer. Using grounded theory to analyse 85 clinical interactions between doctors, patients and family members, we argue that uncertainty is a major source of tension for terminally ill patients, with individuals confronting a choice between transitioning to palliative care or volunteering for an experimental/trial medication that might postpone death. Regardless of their efficacy, patients must also consider how such experimental treatments might impact their quality-of-life. We argue that clinical trials produce uncertainty through (i) discussions about the efficacy of clinical trials; (ii) the physiological consequences of clinical trial medications; and (iii) the impact clinical trials have on patient's prognostic understanding of their terminal cancer. Accordingly, while study participants encounter high prognostic certainty (i.e. they have a fatal cancer), they nonetheless experience considerable uncertainty in relation to their participation in clinical trials.
OBJECTIVES: Analyze entire oncology clinical visits and examine instances in which oncologists have to break the bad news that patients' treatments are no longer effective.
METHODS: Using conversation analysis we examine 128 audio recorded conversations between terminal cancer patients, their caregivers, and oncologists.
RESULTS: When oncologists break the bad news that a patient's treatment is no longer effective, they often use a conversational device we call an "exhausted current treatment" (ECT) statement, which avoids discussing prognosis in favor of further discussing treatment options. Analysis suggests that improving and prioritizing patient-centered care and shared decision making is possible if we first understand the social organization of clinical visits.
CONCLUSIONS: ECT statements and their movement towards discussing treatment options means that opportunities are bypassed for patients and caregivers to process or discuss scan results, and their prognostic implications.
PRACTICE IMPLICATIONS: When oncologists and patients, by fixating on treatment options, bypass opportunities to discuss the meaning of scan results, they fail to realize other goals associated with prognostic awareness. Talking about what scans mean may add minutes to that part of the clinic visit, but can create efficiencies that conserve overall time. We recommend that oncologists, after delivering scan news, ask, "Would you like discuss what this means?".