Patients' illness narratives—From being healthy to living with incurable cancer: Encounters with doctors through the disease trajectory

Abstract

Background: Narrative medicine emphasizes how stories can increase the understanding of patients' experiences and give important insights into how patients interpret and strive to make meaning in the situation they find themselves in. Aim: The aim of this study was to gain insight into the illness narratives of cancer patients, from the day they suspected that something was wrong until living with incurable cancer. Methods and results: Six men and seven women, aged 47 to 79 years, diagnosed with metastatic cancer and undergoing chemotherapy with life-prolonging intent in an oncology outpatient clinic, were asked to tell their illness stories as freely as possible, without guiding questions. Stories were tape recorded, transcribed, and analyzed by a thematic narrative analysis. Encounters with doctors through the disease trajectory were highlighted by all narrators. Several informants described poor communication and consequences in the form of “doctors delay” and substandard psychosocial care. Continuity in follow-up and the physician's ability or inability to break bad news and adapt information to the patient's wishes and preferences were particularly emphasized. Conclusion: A key finding was the importance of the doctor's role throughout the whole trajectory. A good doctor-patient relationship was characterized by continuity of care in follow-up, and trust acquired over time, based on the physician's thorough medical knowledge combined with sensitive communication and empathy.