Talking to Your Patients & Their Families About SUDEP
Speaking with your patients about the risk of SUDEP is a difficult but necessary conversation. Disclosing information about SUDEP and its risk factors is critical for preventing deaths due to epilepsy and other seizure disorders. Learning about SUDEP has also been shown to increase patients’ medication compliance. In addition, we recommend that healthcare providers encourage their patients’ caregivers to take seizure first aid courses as well as CPR and/or Basic Life Support Training.
Most patients with epilepsy and their caregivers have reported a desire to receive disclosure about SUDEP from their healthcare providers. Multiple national organizations including the American Epilepsy Society and the American Academy of Neurology recommend that healthcare providers speak to patients and their caregivers about the risk of SUDEP. Physicians at Duke University and The Danny Did Foundation created the SPIKES framework to guide healthcare providers’ disclosure conversations with patients.
SPIKES Framework:
SETTING:
Ensure the conversation takes place in a private, comfortable space, preferably in person or via a video telehealth appointment.
PERCEPTION:
Ask open-ended questions to determine your patient and/or caregivers’ knowledge of SUDEP.
INVITATION:
If your patient is young, ask their parents/caregivers if they would like to include them in the conversation. Ask your patients and their caregivers what they would like to know about SUDEP.
KNOWLEDGE:
Use plain language to share information about SUDEP in a clear way that is easy for anyone to understand.
EMPATHY:
Make space for patients and caregivers to share their concerns and emotions that arise during the conversation. Provide additional resources that can support patients and caregivers process their feelings after the initial conversation.
SUMMARIZE:
Provide a clear summary of the information you have disclosed, and ask your patient and caregivers if they can repeat back the key points of the conversation.
This framework utilizes the teach-back method and motivational interviewing techniques to encourage an open dialogue between patients and providers and to ensure patients and their caregivers fully understand the information being disclosed. Additional information about how to effectively speak to your patients about SUDEP can be found on PreventingEpilepsyDeaths.org.
Research Supporting SUDEP Disclosure to Patients:
Annals of the Childhood Neurology Society: “Communication about sudden unexpected death in epilepsy: Understanding the caregiver perspective”
Applied Clinical Informatics: “Improving Patient-Centered Communication about Sudden Unexpected Death in Epilepsy through Computerized Clinical Decision”
The Journal of Pediatric Pharmacology & Therapeutics: “Sudden Unexpected Death in Epilepsy (SUDEP): A Review of Risk Factors and Possible Interventions in Children”
Epilepsy & Behavior: “Qualitative insights into the feelings, knowledge, and impact of SUDEP: A narrative synthesis”
Epilepsy & Behavior: "SUDEP: what do parents want to know?”
Epilepsy & Behavior: “Medication adherence, anxiety and depression, and safety of epileptic patients following receiving information about sudden unexpected deaths in epilepsy: A quasi-experimental study with before/after design”
The information on this website is not medical advice. Please talk to your doctor about any health concerns you or a loved one may be experiencing.