SUDEP is essentially an unavoidable complication of epilepsy. It is not experienced as a consequence of something which the doctor has, or has not, done. A recent audit of a single clinic’s experience of SUDEP identified the most susceptible individuals as young males with focal epilepsy treated with polypharmacy (Beran et al. 2004). In this particular study there was no relationship between SUDEP and left or right handedness, use of alcohol nor deterioration of epilepsy at the time of death. Despite these findings the very next case of SUDEP, encountered within this practice, was that of a healthy young female with primary generalised seizures treated with monotherapy.

The reason for the above background information is to reinforce the notion that there cannot be a material risk, which is the doctor’s unequivocal responsibility to divulge within the common law legal system. The Australian case of Rogers v Whitaker cast in stone the doctor’s responsibility to discuss material risks with patients so as to protect them with the capacity of informed consent to propose treatments. It follows that the doctor cannot be considered negligent for failure to discuss SUDEP with a patient who has not asked questions relevant to it, as there are no material risks involved.

What is also apparent from the above discussion of a single practice audit is that the definition of propensity to SUDEP is not an absolute domain. While the audit reinforced the popular conception of what constitutes the higher risk population, the very next case defied all these accepted standards. To have advised this young lady that she was not at risk of SUDEP may have been deemed both irresponsible and potentially negligent in the light of her subsequent demise.

Should a patient ask pertinent questions, relevant to SUDEP, then the situation is quite different. The doctor is the accepted expert and thus, if asked questions, has both a duty of care and an ethical responsibility, to provide truthful answers to the best of his/her ability. If incapable of providing adequate answers, the doctor has a responsibility to either refer the patient to a better informed specialist or to an appropriate source of information.

Where the patient has not asked any questions regarding SUDEP, and there is no material obligation to discuss issues pertinent to SUDEP, then there emerges a question of the patient’s unassailable right not to be advised about it. To discuss a condition for which there is no definable remedy, and where such discussion may evoke fear and impair quality of life for both the patient and his/her relatives, there may be raised questions of negligence. As the doctor cannot adequately protect against SUDEP, it is argued that the doctor has no obligation to discuss the condition, unless such explanation is sought by the patient. To discuss it without consent from the patient, may significantly destroy quality of life and may be grounds for litigation against that doctor.

The material discussed thus far has not been subjected to the adversarial debate within the courts. It merely reflects conjecture up until such time as the opinions expressed have been tested by the judiciary. The purpose of this discussion is to air the competing views within the legal debate rather than to provide absolute answers.

The final issue, when considering legal questions relating to SUDEP, focuses upon the doctor’s obvious duty of care to all patients under his/her management. The doctor has an obligation to provide optimal care to patients and to ensure that he/she is capable of offering a standard of care expected from similarly qualified professionals. The level of what constitutes such care was based upon the standards provided by a body of doctors, considered to be the peers of the doctor in question, as was determined by the Bolam Principle. This meant that the doctor could base his/her behaviour on that expected from similarly qualified colleagues.

This standard of care was questioned subsequent to Rogers v Whitaker and it was held that it was the role of the courts to define what constituted an acceptable standard of care.

With an explosion of litigation and the perilous state of one of the medical defence organisations (medical indemnity insurer) there was a concerted effort to revisit tort law and to reinstate the concept of the Bolam Principle. Again this will require court decision to fully define what the current state of practice is, but what is apparent is that doctors will have to practice defensive medicine and will need to respect the duty of care owed to their patients. In other words, one cannot divorce legal considerations of SUDEP from the broader issues of legal expectation in the treatment of epilepsy as a whole.

Roy G Beran
Professor, School of Medicine, Griffith University
Director,Strategic Health Evaluators
Neurologist, Liverpool Hospital, Australia

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