October 2024

NEUROSCIENCES

HOW TO TALK TO YOUR PATIENTS ABOUT SUDDEN UNEXPECTED DEATH IN EPILEPSY

​In observance of Epilepsy Awareness Month, Northwestern Medicine Comprehensive Epilepsy Center and Danny Did Foundation have partnered to highlight the critical role you play in managing patients with epilepsy and reducing the risk of sudden unexpected death in epilepsy (SUDEP), the most common epilepsy-related cause of death.
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By initiating healthy conversations with your patients about SUDEP and helping them implement prevention strategies, you can make a significant impact on reducing the risk of SUDEP in your patients.
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Key points to cover when discussing SUDEP with your patients
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Integrate SUDEP risk disclosure into the broader discussion of epilepsy risks. Emphasize that while the risk is low for most people, understanding risk factors and prevention strategies is the best way to reduce your risk.
 
Risk factors
Identify where your patient falls on the risk spectrum.
  • Patients who experience recurring tonic-clonic seizures are at high risk.
  • Patients who have experienced tonic-clonic seizures during sleep are at even higher risk.
  • Patients with these behaviors are at increased risk of seizure and SUDEP:
    • Missing doses of medication
    • Drinking alcohol
    • Facing elevated stress
    • Not getting enough sleep
    • Seizure while unattended

Prevention strategies
Identify concrete prevention strategies that can reduce your patients’ risk.
Patients should:
  • Adhere to the treatment plan.
  • Optimize medical management to stop convulsive seizures.
  • Consider surgical options to control seizures and to reduce risk of SUDEP.
  • Make proper nutrition, diet and lifestyle choices.
  • Have regular medical visits — ideally with an epilepsy specialist — if convulsive seizures are not completely controlled.
  • Monitor for seizures, especially during sleep. Seizure alerting devices:
    • Offer an added layer of support by triggering intervention during a seizure.
    • Track seizure events, which provides data that can be used by a clinician to optimize a treatment plan.

​Why discuss SUDEP with your patients?
  • Multiple professional societies, including the American Epilepsy Society and American Academy of Neurology, recommend that clinicians provide SUDEP counseling to patients and their caregivers.
  • Studies show that:
    • Nearly 100% of people with epilepsy and their caregivers want SUDEP communication from their physician
    • Counseling about SUDEP leads to positive behavior changes and does not increase caregiver anxiety

Other resources for physicians  
Access SUDEP Resources
Stephan Schuele, MD, MPH, Chief of Epilepsy and Neurophysiology and Professor of Neurology and Physical Medicine and Rehabilitation at Northwestern Medicine.

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Northwestern Medicine welcomes the opportunity to partner with you in caring for your patients. ​

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