Very often, how a message is given is more important than the content of the message itself. How many times have you been upset with someone, not for what they said, but how they said it? The same is true when talking about SUDEP. How it is discussed often has a greater impact on the result than hearing of SUDEP itself.

Let’s say a man falls off a ferry into the ocean. His life is at risk. He knows it and the ferry captain knows it. If the ferry captain shouts to the man ‘Swim or you might drown!’ the man is likely to become alarmed and thrash more violently out of fear he might die.

If instead the captain said, ‘This happens sometimes. I’m going to tell you what you can do to keep yourself afloat. You don’t need to drown when you can do things to prevent it. First, take off your shoes, jacket, and heavy clothing because those will weigh you down. Next, lie on your back and try to float on the water. Fighting against the water will only tire you out. I have stopped the boat. Just paddle gently to it. Take your time. That way you will reach the boat without spending yourself and getting into trouble.’

Telling persons with epilepsy and their family members about SUDEP is similar to the wise ferry captain coaching the passenger. The captain does not avoid discussing death – the risk is obvious to everyone. What the captain does is reassuring and useful. He focuses his message upon providing the passenger with the practical skills the passenger needs to have the best opportunity to preserve his life.

We have advantage over the captain regarding SUDEP. The crisis has not occurred yet, so the conversation can (and must) begin with specific positive steps persons with epilepsy and their families can take to improve their overall outcomes. These would include explaining how medications work, their behavior in the bloodstream, therapeutic ranges, and the challenges to be faced in maintaining proper blood levels day in and day out. These include talking about first aid, about how lifestyle habits can improve the chance of seizure control, and the importance of identifying and avoiding seizure triggers. These include the unambiguous goal of good seizure control, with a clear plan for further diagnostic workups and/or treatment changes if current efforts are not successful. These include educating the person about medication side-effects and how to recognise toxicity so these can be reported – and especially so these do not cause poor compliance.

Once patients and families possess the knowledge and skills they need to help protect life, then the physician is in the ideal position to introduce SUDEP as constructive therapy. SUDEP provides the physician with a compelling opportunity to illustrate why proper medical self-management skills are so valuable to the person and family. While these skills are designed to prevent seizures, they also afford important protections against more rare and serious complications in epilepsy, including SUDEP and status. The take home message, ‘Practising these skills daily can reduce your risk of harm from epilepsy. That puts your future in your control.’

So what does this mean for real world medical practices? First, patient and families can handle the discussion of SUDEP and other epilepsy risks when presented properly. Second, the discussion of SUDEP must be preceded by a boatload of patient and family education that provides the knowledge and practical skills needed. This understanding allows them to cope medically and psychologically with the knowledge of SUDEP. Third, knowing epilepsy carries risk is what cements patient and family skills into daily practice and insures better therapeutic outcomes. Finally, the time required to teach every family is not practical for the physician. Specially trained support personnel, such as nurses, health educators, and epilepsy association staff are the key to providing this care. Add them to your practice.

Written By: Robert J Mittan, Ph.D.
Seizures & Epilepsy Education (S.E.E.)
Catalina Rofloc Mittan, Former Executive Director,
Los Angeles County Epilepsy Society

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.