Barriers to shared decisions in the most serious of cancers: a qualitative study of patients with pancreatic cancer treated in the UK

Background Less than 20% of patients with pancreatic cancer present with localized, potentially curable tumours. Even when potentially curative surgery is possible, mortality is high. Only 20-25% of patients who have had resected ductal adenocarcinoma of the pancreatic head survive 5 years. Other treatments include chemotherapy, radiotherapy and palliative care. Aim To explore patients' perceptions of barriers to shared decision making in a condition in which shared decision making might be difficult. Method Thematic analysis of narrative interviews with 32 people diagnosed with pancreatic cancer in the UK; interviews with a social scientist, usually in people's homes. Results We found that barriers to shared decisions include the idea that investigations are conducted to determine whether the patient qualifies for surgery, rather than to establish whether surgery is an option to consider; a sense of being pressured to accept treatment, a sense that in a life-threatening situation, there are no 'real options'; and the confusion that can be caused when clinical opinions differ. Conclusion We need to ask how patients can be expected to engage in an informed, shared decision if they are made to feel that they are one of the 'winners' if they qualify for surgery. When each treatment decision might have serious consequences for a patient's remaining months, we suggest that there is a particularly strong imperative to make sure that the patient is not subject to other people's assumptions about what is best for them and that patients are offered the opportunity to share in decisions.