What I was told about SUDEP was that I should really try not to worry about it. The terms in which they discussed it with me were "Now I know you're going to read about all kinds of scary things online, and I want you to try not to be too worried. They are extremely rare."
In fact, yes, I did read all kinds of scary things, mostly things under the heading "SUDEP" Which, in short, is the tendency for people who have epilepsy to suddenly drop dead for no apparent reason. Boy, that is scary indeed. Also, it is just one of those things. But there are statistics that indicate circumstances under which SUDEP may be more likely or less likely, syndromes that produce more or fewer incidences of SUDEP, demographics which are most prone to SUDEP (young adult males), calling an infant death SUDEP vs. calling it SIDS, in short lots of useful information can be found to help you focus your dead panic when you read that your kid might drop dead, not from a seizure, but, essentially, for nothing. That empowering ability to focus your terror is pretty important for a parent.
This article, is a blood-boiling account of a physician withholding information about SUDEP from a patient's family. As a parent, I thought it sickening, and I can't imagine how this exchange must have affected the parents of the young man who died.
In summary, the doctor elected not to educate the parents of this young adult male, or even to educate the patient himself (remember--he is the textbook candidate!) about SUDEP, perhaps because it was hard for him to talk about. Maybe because the parents would be, essentially, powerless to do anything with this knowledge--though how true that is might be debated. Maybe he thought them overbearing, or approaching the limits of their capacity to deal with their son's condition.
When the bereaved parents confronted the doctor with the obvious question, "Why had we (his doctors) not told them or their son that this could occur?" This doctor answered them with another question, one that--in my dreams--would have precipitated the loss of several of his teeth.
"Would he have lived any differently if he had known?" "If we told every patient about this possibility, some might not dare to live independently, or might be burdened with anxiety..."
Jesus. Who knows why a neurologist would maintain such a gutless and patronizing position?
To me, the obvious reply is "Well, how the hell would you know what people are capable of doing with important information, if you consistently withhold it from them? Who died and made you God, anyhow?" There are certainly known and, to a degree, controllable risk factors surrounding SUDEP(poor seizure control for one--can anyone imagine a young adult male, having just left the nest, being a little "noncompliant" about meds to control seizures? Especially if they have unpleasant side effects or interact unfavorably with some other chemical he might want to use?). While it may be true that SUDEP isn't entirely predictable, it seems reckless to just leave it out of the discussion. If this person were blind, would you fail to educate him about his increased risk of getting hit by a moving car, out of fear that he might elect not to walk on busy streets alone? Would your reason be that the behavior of motorists is unknowable and uncontrollable, so the increased risk cannot be mitigated?
The article ends with a piteous "To this day, I do not know if my answer was appropriate."
Oh, cry me a river. Your practice with regard to this patient was insufficient to prepare the patient and family for the possibility of his sudden death. That's the real pity.