The Myth of Informed Consent in Rectal Cancer Surgery: What Do Patients Retain?

BACKGROUND: Previous research in colorectal cancer has focused on survival, recurrence, and functional outcomes. Few have assessed the decisional needs of patients or the information patients are retaining from the informed consent process. OBJECTIVES: The aims of this study were to describe the decisional needs of adult patients with rectal cancer when deciding on the surgical treatment of their disease and to identify gaps in patients' recollection of the informed consent discussion. DESIGN: Face-to-face interviews were conducted with the use of a questionnaire based on the validated Ottawa Decision Support Framework Needs Assessment. SETTING: This study was performed at a university-based academic Cancer Assessment Center, in Ottawa, Ontario, Canada. PATIENTS: Adult patients with rectal cancer treated with low anterior resection or abdominoperineal resection were included. MAIN OUTCOME MEASURES: The primary outcomes measured were patients' knowledge and understanding of decision and their decisional needs. RESULTS: Thirty patients were interviewed between November 2009 and July 2010. Eighty percent were male, with a median age of 65. None of the patients perceived having a choice of surgical options. When questioned about the main outcomes of rectal cancer surgery, 47% could not recall a preoperative discussion of risks to bowel function, 47% could not recall a preoperative discussion of risks to sexual function, and 57% could not recall a preoperative discussion of risks to urinary function. Patients would like information regarding functional outcomes, body image, and the immediate postoperative period. A minority of patients desire information regarding cure rate, need for a second surgery, or the ability of surgery to treat their symptoms. Patients would like information that is portable and trusted by their health care team that they can review at their own time. LIMITATIONS: To avoid introducing decisional conflict before surgery, patients were interviewed at the first postoperative visit. Preoperative informed consent discussions were not standardized. CONCLUSION: Despite a comprehensive educational oncology pathway, patients retain little of the informed consent discussion. This study highlights the dichotomy between the outcomes that surgeons and patients value most. The results of this study will guide future efforts to improve informed consent.