Medical information and decision-making in palliative cancer: a qualitative study of patients’ perceptions, needs, and preferences regarding physician communication

Abstract

Patients with advanced cancer are frequently confronted with complex treatment decisions in the context of high emotional burden and potential limited prognostic benefit. Physician communication and the provision of medical information are therefore central to informed decision-making in the palliative treatment setting. However, little is known about how patients themselves perceive physician communication during oncological informed consent consultations and which needs and preferences they articulate regarding provision of information and decision-making. The aim of this study was to explore patients’ perceptions of physician communication and to identify their needs and preferences in the context of palliative cancer treatment. This qualitative study was embedded within a multicenter interventional project in Germany. Semi-structured interviews were conducted with patients diagnosed with stage IV esophageal cancer, stage IV (non-) small cell lung cancer, or Barcelona Clinic Liver Cancer (BCLC) stage C hepatocellular carcinoma who were undergoing systemic therapy. Interviews were conducted either in the outpatient clinic or by telephone, audio-recorded with participants’ consent, and transcribed verbatim. Data were analyzed using qualitative content analysis according to Kuckartz, combining deductive and inductive category development. Coding was performed using MAXQDA. Analysis identified three central themes. First, communication quality shaped patients’ understanding and coping: patients valued direct, empathic, and transparent communication, but comprehension was often limited by emotional burden, medical terminology, and cognitive overload. Second, treatment decisions were often perceived as predetermined: shared decision-making was limited, and many patients relied on trust-based delegation rather than active decisional control. Third, communication needs were individualized and dynamic: patients differed in their desired information depth and emphasized the need for repeated conversations, plain language, involvement of relatives, and psychosocial support. Communication in palliative oncology should be conceptualized as an adaptive and ongoing process rather than a single informational event. Patients’ informational needs and preferences for participation vary considerably and are shaped by emotional readiness, prior knowledge, and coping strategies. They should therefore be proactively explored prior to diagnosis and treatment discussions. The study was registered at the German Clinical Trial Register (DRKS00029632).