title: '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.
  
  
  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.
authors.affiliation: Institute for Medical Ethics and History of Medicine, NRW Junior Research Group Medical Ethics at the End of Life: Norm and Empiricism, Ruhr-University Bochum, Bochum, Germany. jan.schildmann@rub.de
authors.forename: J
authors.initials: J
authors.lastname: Schildmann
authors.forename: P
authors.initials: P
authors.lastname: Ritter
authors.forename: S
authors.initials: S
authors.lastname: Salloch
authors.forename: W
authors.initials: W
authors.lastname: Uhl
authors.forename: J
authors.initials: J
authors.lastname: Vollmann
mesh_terms: D000328:Adult; D000368:Aged; D003657:Decision Making; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007258:Informed Consent; D008297:Male; D008875:Middle Aged; D010190:Pancreatic Neoplasms / Q000628:therapy*; D010358:Patient Participation; D057240:Patient Preference; D017060:Patient Satisfaction; D010817:Physician-Patient Relations; D011379:Prognosis; D011795:Surveys and Questionnaires; D035502:Trust
keywords: end of life; informed consent; medical ethics; pancreatic cancer; treatment decision-making