The Problem: Patients with VP shunts may face challenges maintaining oversight of critical medical device settings due to inconsistent documentation practices and limited frameworks for patient input in device management decisions. When programming errors occur, patients may lack clear pathways to reverse mistakes or participate meaningfully in their care decisions—gaps that patient-centered healthcare practices could address.
Our Requests to State Medical Boards
1. Mandatory Documentation Standards
- All VP shunt setting changes must be documented in the patient's medical record with date, previous setting, new setting, and clinical rationale
- Medical offices accepting new patients with existing shunts must document complete setting history
- Patients must receive written documentation of any setting changes
2. Patient Decision Rights for Programming Errors
When an unintended setting change is discovered that deviates from the documented treatment plan, patients have the right to:
- Return to the originally planned setting, or continue with the unintended setting if clinically beneficial
- Seek second opinions and bring recommendations from other qualified physicians
Why This Matters: Many neurosurgery offices already follow excellent documentation practices. This petition addresses the minority of cases where patient rights are inadequately protected. One patient experienced an unintended setting change and was denied both consultation about the error and the ability to follow a specialist's recommended correction—illustrating an extreme absence of patient input in device programming decisions affecting her neurological health.
Sign to Support: Medical device management should integrate clinical judgment AND patient input. By signing, you support establishing basic documentation standards and patient decision rights that align neurosurgical device management with established patient-centered care standards. (extra case study)
