'One also needs a bit of trust in the doctor ... ': a qualitative interview study with pancreatic cancer patients about their perceptions and views on information and treatment decision-making

Abstract

Background: Information about diagnosis, treatment options and prognosis has been emphasized as a key to empower cancer patients to make treatment decisions reflecting their values. However, surveys indicate that patients' preferences regarding information and treatment decision-making differ. In this qualitative interview study, we explored pancreatic cancer patients' perceptions and preferences on information and treatment decision-making.

Patients and methods: Qualitative in-depth interviews with patients with pancreatic cancer. Purposive sampling and qualitative analysis were carried out.

Results: We identified two stages of information and treatment decision-making. Patients initially emphasize trust in their physician and indicate rather limited interest in details about surgical and medical treatment. In the latter stage of disease, patients perceive themselves more active regarding information seeking and treatment decision-making. All patients discuss their poor prognosis. Reflecting on their own situation, all patients interviewed pointed out that hope was an important driver to undergo further treatment also in advanced stages of the disease. Interviewees unanimously emphasized the difficulty of anticipating the time at which stopping cancer treatment would be the right decision.

Conclusions: The findings can serve as starting point for reflection on professional decision-making in pancreatic cancer and larger representative surveys on ethical issues in treatment decision-making in pancreatic cancer.

Keywords: end of life; informed consent; medical ethics; pancreatic cancer; treatment decision-making.