Reflections on communication of disease prognosis and life expectancy by patients with colorectal cancer undergoing palliative care: a qualitative study

OBJECTIVES: Patients with colorectal cancer undergoing palliative treatment receive extensive treatment-related information throughout their disease trajectory. We aimed to explore the experiences of patients with incurable colorectal cancer while in palliative care and their reflections on the information provided by physicians and nurses. Our main focus was the patients’ thoughts about how information about disease status and life expectancy was communicated, from the first time that they were informed about the incurable nature of their disease through to postsurgery palliative treatment. SETTINGS: Patients with colorectal cancer receiving palliative chemotherapy. RESEARCH DESIGN: We used a qualitative approach, and the data were analysed by qualitative content analysis. PARTICIPANTS: 20 patients (34–75 years of age) were included in the study; 12 received first-line chemotherapy and 8 received second-line chemotherapy. Eleven patients were treated by oncologists, and nine were treated by junior physicians. RESULTS: Data-driven empirical analysis identified three themes: (1) inadequate information during the initial phase of the disease trajectory; (2) hope and information further into the disease trajectory and (3) personal, professional and organisational factors that influenced information and communication throughout the disease trajectory. CONCLUSION: The participants’ experience of being told for the first time that they had an incurable disease was perceived as inadequate, while postsurgery palliative chemotherapy, physicians and nurses offered hope. The participants preferred customised information about their treatment and likely future prospects and physicians and nurses who took a holistic and compassionate approach focusing on their lifeworld. To be a sensitive, holistic and compassionate physician or nurse requires knowledge and confidence. To achieve this requires training and guidance at universities and in hospitals.