Addressing When Patients Decline Colorectal Cancer Screening

©️ 2024 Kaiser Foundation Health Plan, Inc.

Early in the colorectal cancer screening work of the Academic Innovations Collaborative with 28 Harvard-affiliated primary care sites, several of the care teams had questions about how to handle when individuals decline this screening. There was a fair amount of concern about the documentation requirements, especially whether one must document that risk of death was discussed with the patient as part of informed consent for declining colorectal cancer screening. Based on those concerns and in concert with guidance from CRICO^[1] (the largest medical professional liability carrier in Massachusetts), we established the following recommendations.

Addressing When Patients Decline Colorectal Cancer Screening

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• Recognize patients’ right to decline screening and avoid any blaming.
• Standardize how your organization handles and documents when patients decline.
• Define what constitutes a “true decline” (e.g., checking a box, saying “no” to a colonoscopy, having a conversation with a clinician, confirming with the patient after colorectal cancer education, refusing fecal occult blood testing).
• Ensure patients have adequate information to make an informed decision both before and after declining.
• Design the process to ensure an emphasis on principles and practices of shared decision-making.
• Expire declines every year to reopen discussions and to add the patient back to the population due for screening.
• Offer alternative screening options to colonoscopy (e.g., sigmoidoscopy, stool testing).
• Loop in risk management staff to (1) determine if there are existing standards and protocols, and (2) submit policies, procedures, and protocols to risk management for review and approval.
• Base actions and documentation on level of concern. If there is a higher level of concern (i.e., symptoms), there is more burden to document concerns, thought processes, tracking, patient commitments to care, etc.
  • For example, the documentation for someone at average risk who is due for colorectal cancer screening and declines will be very different than for a person at higher risk. Document the nature of the conversations that took place: “You’re over 50 and are due for screening” document offered, patient declined and informed consent. Compare that to: “I’m very concerned about symptoms/the possibility of cancer along with your reluctance to have this test.”
  • If a patient is at higher risk, document that higher risk factors were discussed with the patient. Document why this is important and why it is recommended.
• Consider how to make the process tailored to overcome individual barriers (e.g., “too busy”); keep checking in with patients (e.g., every six months); and document all reminders.
• Asymptomatic and at average risk or low-risk patients may not need a registered or certified letter, but recommendations and what the patient does and does not agree to do still need to be documented. If the patient says, “I’ll schedule” and then does not, the clinician or care team still has some burden to pursue and track the patient.