I must say I am surprised at the extent of controversy regarding whether or not physicians should discuss SUDEP with patients and families. Fear of dying from seizures is nearly universal among patients and families. Most are reluctant to speak of it openly. Patients and families explain they don’t ask their physicians because they are afraid their worst fears might be confirmed. These fears are substantial. In our original UCLA study (Mittan 1986), we found approximately two-thirds of patients were afraid they could die with their next seizure and nearly three-fourths were afraid seizures would cause further brain damage.

For 22 years I have presented the Seizures & Epilepsy Education (S.E.E.) program. This has given me the opportunity to speak with nearly 30,000 patients and families with epilepsy in Australia, Canada, New Zealand, and the U.S. I have found patients and families are almost universally afraid of death from seizures. It makes sense – even non-convulsive seizures are frightening to people. So far when I have asked parents, all but one thought that their child was going to die when they first witnessed the child’s seizures. The one exception was an epilepsy nurse specialist whose daughter started having absence seizures.

When these inevitable patient and family fears are not discussed, they are left unchecked. These fears can, and often do, run rampant to the serious ruin of quality of life. Fear is the force behind developmentally disabling overprotection and overcontrol of the person with epilepsy. Fear is the force leaving people afraid to be alone and afraid to go out by themselves because of seizures. Fear shrinks life to the house and social contact to the immediate family for far too many.

Rather than alarming families, discussing causes of death in epilepsy gives them a more realistic appreciation of the risk – which is often much to their relief! The S.E.E. program has taught patients and families about SUDEP, status epilepticus, and fatal accidents in epilepsy, including relative risk and circumstances for each. A controlled outcome study (Helgeson et al. 1990) and a recent study by Shore et al. not yet published showed significantly reduced fear as a result – and equally important, significantly improved compliance.

During every S.E.E. program I poll the audience to find out how many have discontinued their medications on their own and have gone into status epilepticus. Consistently 10-15% will raise their hands. They protest they were ‘never warned’ of the danger. Nearly all were angry with their physician about it. In fact, they undoubtedly were warned with ‘you should never stop taking your medications!’

However, telling people what to do is rarely effective in changing behavior. It is essential to tell people why to do it. Every prescription patients receive is accompanied with some version of ‘take this exactly as directed.’ Patients hear this so often it stops being meaningful. After all, how often have they failed to take all of their antibiotics or other medication and nothing bad happened? Why should it be any different with seizure medications? However, if the patient knew they risked status and possibly death by stopping their medication – that would get their attention. But to do this, the physician has to talk about status, SUDEP, and their lethal potential.

The benefits of talking about SUDEP, status epilepticus, and other risks in epilepsy not only fulfills patients’ and families’ right to know, but can significantly contribute to reducing fear. It may save a life. Rather than threatening the emotional wellbeing of patients and families (who already live with fear of death), the discussion of SUDEP offers a therapeutic opportunity. It is a chance to significantly improve quality of life and reduce harm from seizures. The methods used in disclosing this information can strongly influence medical and psychosocial outcomes.

Written by: Robert J Mittan, Ph.D.
Seizures & Epilepsy Education (S.E.E.)

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