Over 15 years I have lost many patients to SUDEP. In the old days of long waiting lists people would sometimes die whilst waiting for scans or inpatient monitoring prior to surgery. But SUDEP occurs in many situations. There were patients I had seen perhaps only once after a single seizure and there were patients I hadn’t seen for a long time, who had been, as far as I knew, quite well. On average, 6-10 patients of mine have died from this every year.

It is difficult to describe the feeling that you have as a neurologist taking care of someone when this happens. First, you are conscious of what an awful event it is for those closely involved, but there is no doubt that you feel a lot of guilt and responsibility. This is particularly the case if the person had persistent seizures no matter what treatment was tried. It might even be harder though when the person had seemed well controlled. Sometimes SUDEP occurred where I had given strong warnings that it was possible yet people hadn’t complied with medications or lifestyle advice. However, because it has sometimes happened ‘out of the blue’ in patients who had been taking good care of things, I am less convinced that it does a lot of good to make patients feel responsible for this. Bereavement is even more difficult for a family to deal with when they think that if they had pushed their spouse or child a little harder to behave that bit better it would have saved them. I’m not sure this is true.

I try to contact all the families after hearing of such a death. Once I would hear from the Coroner first but fortunately this is less common now because of greater awareness of SUDEP. Police or ambulance paramedics often ring me from the scene and I have even spoken to families at that time but it is a harrowing experience and not one where I think I provided much benefit.

Because of the way these deaths have occurred, I have become less dogmatic in explaining to people that they are really in control of preventing this. Good seizure control is an important element but there is so much we don’t know about this condition that it is very hard to provide specific advice. Certainly, I alert people to the possibility of SUDEP and I generally try to bring it up at the time of first diagnosis. I explain that not treating asthma or diabetes can have serious consequences and the same applies to epilepsy. Most people can grasp that. Put in these terms people react to this information very well. It is much harder for people who have lived with epilepsy for a very long time and not heard of SUDEP, to suddenly be confronted with it. That is a difficult situation and one that generates a lot of anger. Nevertheless, it is critical for people to understand that this is a possible complication of epilepsy while keeping in mind that it is still a relatively rare occurrence. Once again, the comparison with asthma is a good one. People who have very well controlled asthma can have attacks that are fatal, even those who take good care of their condition.

I don’t think SUDEP has changed the way I manage seizures. The aim is always to try and get complete control of convulsions and that remains the case. One of the limiting aspects of epilepsy is the fact that it is so random. Seizures can’t be predicted and it is this unpredictability, which causes most of the disability. SUDEP is much the same. It is an unpredictable development which, whilst relatively rare, can occur at any time in the course of illness and sometimes even in those whose seizures appear to be very well controlled. This causes much anxiety; the combination of an unpredictable event with such devastating consequences. I think that speaking with families who have lived through this is one of the hardest things I’ve ever done. The tragedy of the situation is compounded in that we know so little about it and so little research is undertaken.

Written by: Mark Cook
Victorian Epilepsy Centre, St Vincent’s Hospital
Melbourne, Australia

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