METHODS Seventy disease-free rectal cancer patients and 60 (surgical, radiation, medical) oncologists were interviewed. Role preferences in deciding about pre-operative radiotherapy in rectal cancer treatment were assessed using the Control Preferences Scale. Views on the role cancer patients should play in treatment-related decision-making in general were assessed using a set of closed questions. Participants were invited to explain their answers, which were written down. Two coders categorized the responses.

RESULTS Except for 8 (11%) patients, all participants preferred patients and clinicians to share in the radiotherapy decision. A majority of patients (96%) and clinicians (95%) believed cancer patients should be involved in decision-making, explaining it mostly in terms of information sharing, and patient autonomy and responsibility. Remarkably, 23% of patients nominated solely the need for information as reason. A majority of patients (79%) and clinicians (69%) judged that clinicians should try involving reluctant patients. Those opposed, referred to respecting patients' attitude. Most patients (74%) and clinicians (82%) thought that clinicians cannot always weigh pros and cons of treatments for individual patients. Reasons referred about equally to individual patient differences, insufficient patient-clinician acquaintance, and clinicians' subjective stance. Patients (88%) and clinicians (87%) were more outspoken regarding clinicians' inability to weigh quality versus length of life for patients, even though this being an illustration of the former pros and cons.

CONCLUSIONS Almost one in four patients considered ‘being informed' as ‘participating', which is in striking contrast to common definitions of shared decision-making. They seemed to think of clinicians as knowing the ‘right' thing to do. Most clinicians, however, doubted clinicians' ability to estimate pros and cons of treatments for patients. This contrasts to the current guideline-driven and oncologist-based decision-making for this patient group.