Patient autonomy in advanced cancer. A video-based qualitative study of clinical communication in routine hospital visits

Abstract

This thesis contributes to the discussion about how to enhance patient autonomy in the case of advanced cancer posing an existential threat to all aspects of being. The aim was to explore 1) what existential concerns patients with advanced cancer disclose during routine hospital visits and how they communicate such concerns, 2) how physicians respond to patients’ existential concerns, and 3) how next-of-kin accompanying the patient contribute to the information exchange. We employed a qualitative research design, studying video-recorded routine outpatient hospital visits involving patients with advanced cancer, using analytic principles from “microanalysis of clinical interaction”. Most patients disclosed existential concerns during the consultation. However, existential concerns were hesitant, subtle, and indirect, typically hidden in biomedical terms. The physicians habitually responded to these concerns by keeping the agenda around biomedical aspects, resulting in that the existential issues remained unaddressed. In most consultations, the patient was accompanied by a next-of-kin, whom the physicians mostly related to as a “supporter on the sidelines” rather than addressing the couple as a team. When claiming the floor, next-of-kin contributed to securing information that would otherwise have been missing. Next-of-kin provided personal and contextual information that can help the physician when aiming to tailor information and care to the individual patient. The thesis points to a potential existential neglect in the physician and in the medical culture. It argues that a narrow focus on patient choice and decision-making may be inadequate, as it does not consider that persons are vulnerable, dependent, and relational. Insights from this thesis can inform the discussion about how physicians can play a role in attending to existential concerns and restoring autonomy in collaboration with the patient, next-of-kin, and the interdisciplinary team.