Negotiating the limits of uncertainty and non-disclosure: Communication and culture in the management of pediatric cancer treatment in Barcelona (Spain)

This dissertation examines how patients, parents and doctors negotiate the limits of uncertainty and non-disclosure throughout unpredictable cancer trajectories at a hospital in Barcelona, Catalonia (Spain). Drawing on fifteen months of ethnographic fieldwork among seventeen patients, their parents and hospital staff, I focus on non-disclosure as a complex and temporally unfolding social process of communication regulation, thought to protect patients and spare them unnecessary suffering associated with uncertainty and bad news. Non-disclosure is negotiated first by parents and doctors in the patient's absence, and second, by patients, parents and doctors. I examine non-disclosure in the context of several interrelated processes, such as acquiring medical knowledge, learning to use biotechnical equipment, and trying to guess treatment's effectiveness, implicated in the management of overlapping and variable uncertainties related to diagnostic procedures, the re-adjustment of treatment schedules, and the unknown future after treatment (remission, relapse, cure or death).; An ethnographic longitudinal analysis, combining participant observation, interviews, questionnaires, and video-recordings of medical and non-medical activities, is complemented by a patient-centered microanalysis of videotaped medical interactions. Questions are the most prominent and frequent type of social action used by patients to negotiate what aspects of cancer are talked about and how. Disagreements over the limits of uncertainty and non-disclosure are observable in long negotiations of what constitutes a sufficient answer. Patients exert pressure with persistent lines of questions in order to obtain information without challenging parents' or doctors' authority. Doctors struggle to strike a balance between disclosing information and protecting patients, and parents sometimes align with doctors and sometimes align with patients.; My analysis calls into question the effectiveness of non-disclosure as a communicative strategy to contain uncertainty and bad news. Adolescent patients, in particular, frequently treat evasive responses and optimistic reassurances as insufficient answers that do not dispel their fears. Non-answers are therefore invitations to continue questioning and worrying. My analysis also contributes to a better understanding of the complex and fundamental role of communication in cancer treatment, suggesting that explicit talk should not be equated with disclosure, nor should silence be equated with non-disclosure.