The law on medical negligence in the UK relies heavily on the Bolam test whereby a doctor is not negligent (i.e. does not breach the legal standard of care) where their practice is supported by a reasonable body of similar professionals. The test has been applied to the provision of information to patients as well as in diagnosis and treatment. Further, following the Bolitho case, any practice must also be justifiable on a logical basis and doctors must have considered the risks and benefits of competing options. Logical justification of any medical practice must reflect any advances in medical knowledge rather than a residual adherence to out–of-date ideas. Thus, the Court may test the medical evidence offered by parties in litigation in order to reach its own conclusions. It may consider not only the magnitude of risk, but also the seriousness of the consequences, the ease by which the risk might be avoided, the resource implications of such avoidance, and the risk of alternative interventions.

Regarding SUDEP, while a small number of medical practitioners appear to oppose the provision of any information on risk, there is a sizeable body of practitioners who believe the contrary. Whether that small number who oppose the provision of information can now be regarded as a reasonable body of opinion is debateable and would be a matter of evidence before the court in a damages claim for medical negligence. The court would be entitled to consider the available knowledge base on SUDEP and in particular on the nature of risk. In the UK, the finding of the National Sentinel Clinical Audit of Epilepsy-Related Death (Hanna 2002) that SUDEP is causally related to continuing seizures (of a variety of types) may constitute strong evidence that SUDEP is potentially preventable insofar as continuing seizures are often amenable to intervention. In addition, there is an extant literature on possible risk categories, precautions and interventions, which also suggests the possibility of precautions and interventions to avoid SUDEP. The court would also consider the potential seriousness of the consequences of not informing a patient of risk which, in the case of SUDEP, is likely to be an influential factor.

In addition, any failure by doctors to provide information on the risks of epilepsy death may be incompatible with human rights protections. Existing rights to life and to family life protections, as well as prohibitions on degrading treatment (such as treatment without informed consent), are likely to impact on any assessment of the appropriateness of medical practice. Such a failure is clearly incompatible with existing clinical guidelines on the management of epilepsy such as the NICE guidelines in England and Wales (2004) and the SIGN guidelines in Scotland (2003), both of which categorise information on SUDEP as an essential element of information provision. The increasing number and importance of clinical guidelines assist the Court in assessing what amounts to a reasonable standard of care.

Given that there has been only one judicial determination in the UK relating to SUDEP, it is prudent to consider the approach taken by the court in that case to the issue of information provision. The determination issued by Sheriff Taylor in 2002 in the Fatal Accident Inquiry into the death of 17 year old Colette Findlay provides clear guidance for doctors on this matter (Taylor 2002). The court accepted evidence that SUDEP was a real risk for individuals whose seizures were not fully controlled. The determination acknowledged that precautions can be taken to minimise this risk. These precautions include controlling the seizures, altering sleeping arrangements, and using alarms. Providing such information was viewed as a reasonable precaution to prevent death. Consequently, Sheriff Taylor determined that in the vast majority of cases patients and/or their families should be told about the risk of SUDEP.

Given this determination, doctors would be well advised in almost every circumstance to advise patients and their families about risk and give information on possible precautions. Indeed, it is arguable that the case for providing information on risk has been strengthened since this court heard its evidence by the findings of the National Sentinel Clinical Audit of Epilepsy-Related Deaths (Hanna 2002).

It is worth stressing the distinction between legal and medical definitions of proof – civil courts will assess evidence on a balance of probabilities rather than scientific certainty. The court will assess whether on a balance of probabilities there was a departure from the standard of reasonable care and whether a death would have been avoided. In the absence of information on risk, individuals and their families lose the chance to take potentially preventative measures. As Sheriff Taylor (2002) noted:

“The risks of sudden death in epilepsy should have been explained to them. There should have been a discussion as to how Colette’s condition might be managed. Issues such as apnoea alarms to detect any cessation of breathing, sleeping in the company of another adult and other similar measures should have been discussed. I accept that there are pros and cons about taking such measures, but there ought to have been an informed discussion. If such measures were not to be taken, then it should have been a deliberate, conscious decision as opposed to a decision by default”.

It is sometimes argued that a doctor’s duty of care requires open and frank discussion of SUDEP with patients who seek information. However, to rely on patients seeking information on risk is an illogical (if commonly held) position – it requires that patients know about risk in order to raise the issue. While some individuals wish to know very little information about risk, they should be offered information and its decline recorded, albeit that opportunity must be provided to revisit the issue where their wishes change. Additional speculation on this matter might look to the potential liability for harm to carers who suffer the shock and trauma of losing a loved one to SUDEP.

In any event, the strongest argument for the provision of information on the risk of SUDEP may well be a moral one in terms of rights to information or one based on good medical practice in empowering patients to deal with risk. Doctors should, however, be mindful of the real possibility of legal liability.

Robert Carr,
Solicitor-Advocate at Anderson Strathern and a Law Society of Scotland
Accredited Specialist in Medical Negligence and Personal Injury Litigation

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