Twenty-six neurologists and fifteen paediatricians in Pakistan were contacted by telephone or email and asked to comment about SUDEP.

Of the neurologists interviewed, 22/26 were trained in Pakistan. Only 13/26 knew about SUDEP and only 6 had seen a case. None of the neurologists raised SUDEP in the discussion of epilepsy management in Pakistan, nor observed any other doctor raising it. Their patients never asked about it. In one case a relative of a patient whose death was classified as SUDEP had raised this issue, but that relative was living outside Pakistan in a developed country. Although most of the doctors never discussed this issue with the patients, one neurologist included SUDEP in the discussion if any patient asked about the death related to epileptic seizures. All the paediatricians interviewed trained in Pakistan. Of those interviewed 13/15 didn’t know about SUDEP. However, two paediatricians had seen a case. None of the paediatricians had discussed the issue with the patients nor had any of their patients asked the question. The doctors did not raise the issue in the discussion of epilepsy management in Pakistan and never saw any other doctor raising it.

Since March 2001, the Comprehensive Epilepsy Control Program of Pakistan (CECP) has conducted 25 free Epilepsy Camps for counseling of patients (n= >2500), 13 Epilepsy School Awareness Workshops for schoolteachers (n=529), 1 Awareness Workshop for Lady Health Workers (n=101), 10 Epilepsy CMEs with interactive sessions for family physicians (n= >500) and 1 Epilepsy CME for final-year medical students (n= >250). No one in the audience ever asked about SUDEP. It should be noted that the objectives of CECP do not include raising the SUDEP issue.

Considering cultural background in Pakistan death is an area which is not talked about (although life after death is believed and talked about). In fact if death is mentioned to a patient or a relative it may be considered as a bad omen. Hence, information on this subject has a lot of inherent problems. Moreover, the emergency health services are not well developed in this country and any discussion pertaining to an emergency may be perceived as a frightening discussion.

However, the sudden death of a patient may raise medico-legal issues therefore, it is advisable to discuss SUDEP at least with the relatives but with reassurance that it is rare and many doctors never see it.

It is concluded that in Pakistan 50% of the interviewed neurologists, most of the paediatricians, and all of their patients are not aware of SUDEP. Those doctors who know it do not raise the issue in scientific discussion. It is very difficult to discuss the issue with the patient or relatives but it should at least be discussed with the relatives.

Syed Wasim Akhtar
Jinnah Postgraduate Medical Centre, Karachi, Pakistan

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