Your patient is an 18-year-old man with an eight-year history of symptomatic localization-related epilepsy. He has a few generalized tonic-clonic seizures per month, and he's erratic about both taking his medication and following up with you in clinic. He continues to drive, despite your admonitions not to — and he was just admitted to orthopedics for the third time this year, this time for a tibia-fibula fracture. The story couldn't be more different for another patient — a 16-year-old who has two nocturnal seizures annually and is compliant with her medications. She tells you she would like to be able to drive, but she doesn't want to break the law. What should you do about each of these patients?
Neurologists often encounter these scenarios. Approximately 700,000 of the 180 million American drivers have epilepsy. Based on recent surveys of patients with epilepsy, approximately 25 percent report having been in a motor vehicle accident due to seizure, according to a 2008 paper in Epilepsy & Behavior.
At first glance, it might seem obvious that to protect the patient and to protect society, an epileptic shouldn't drive. So why is this issue so challenging? For one, patients understandably are reluctant to give up the social and financial independence that driving affords — and physicians are reluctant to challenge a patient's autonomy when it comes to decision-making. The appeal to the ethical principle of respect for autonomy is a strong one. However, there are a number of other ethical and legal principles that must be considered, including the appeal to consequences and the fiduciary obligation of the physician to protect the patient's well-being.
CONFLICTING ETHICAL APPEALS
The principle of respect for autonomy supports the right of an individual with capacity to “hold views, to make choices, and to take actions based on personal values and beliefs.” These actions include refusing a physician's recommendations. Autonomy is not only a prominent consideration in American medical ethics, but is also often the primary one. Not surprisingly, physicians feel it is a challenge to preempt their patients' autonomy, despite recognizing the potentially severe consequences of failing to do so.
While generally the person most affected by a decision is considered first, an uncontrolled epileptic driving presents a unique situation. A seizure will likely not only affect the patient; but could also pose a danger and injury to others as well.
Adding to the ethical challenges is the fiduciary obligation from physician to patient, best described in terms of beneficence (doing what is in the best interest of the patient) and nonmaleficence (avoiding management resulting in an outcome of net clinical harm). On the one hand, it is in the best interest of the patient to be prevented from having a seizure while driving. On the other, the physician may believe that part of avoiding unacceptable harm is preventing the patient from getting into trouble with the law. Given the conflict between ethical principles, maybe the law can provide some guidance?
LEGAL-EASE (OR ANYTHING BUT)
Unfortunately, there is no legal consensus. Some states have strict seizure-free requirements (ranging from three to twelve months) for licensing, while others allow for more flexible restrictions with accommodations after review by a medical advisory board. New Jersey, California, Nevada, Delaware, Oregon, and Pennsylvania mandate physician reporting; others permit reporting but do not require it. While 32 of 51 jurisdictions provide doctors with some immunity with regards to their driving recommendations, in Arkansas and Georgia a physician could be sued for reporting an uncontrolled epileptic driver. The report is considered a violation of patient-physician privilege. In Michigan and Montana, on the other hand, a physician could be sued for failing to report a driver believed to be sound if the patient causes an accident.
There is a reason why not all states require physician reporting. Patients with seizures are more likely to withhold information from their doctor in states where it is mandatory. A 2003 survey in California showed nearly 10 percent of epilepsy patients concealed information from their doctors. This number jumped to 50 percent among patients who had had a previous license suspension. When presented with hypotheticals, four times as many patients said they would conceal information under mandatory reporting than optional. Further, there is no evidence that mandatory reporting reduces the risk of car accidents. In fact, a 2011 Canadian study published in Neurology showed no significant difference in motor vehicle accident risk between epileptics and non-epileptics after adjusting for comorbidities. This finding supports those who feel the current legal restrictions are too strict.
RESOLVING THE CONFLICT
The appeal to autonomy supports allowing epileptic patients to do as they see fit. The appeal to consequences suggests uncontrolled epileptics should not drive. The appeal to the special obligations of beneficence and nonmaleficence is ambiguous. The ethical conflict remains and the law provides no consensus, even if there is some protection for physician reporters in most states. So, how should the cases above be resolved? To determine the most ethically justified courses of action, it may be necessary to look outside the doctor-patient relationship and consider those other people who share the roadways.
The American Medical Association established in the Declaration of Professional Responsibilities that first and foremost physicians must “respect human life and the dignity of every individual.” The declaration adds that we are to “protect the privacy and confidentiality of those for whom we care and breach that confidence only when keeping it would seriously threaten their health and safety or that of others.” A driver with uncontrolled epilepsy clearly fits into the latter category; given our duty to society, physicians have permission to intervene, attempting to prevent harm to the patient and to others.
In 1992, the AAN, Epilepsy Foundation, and American Epilepsy Society released a consensus statement consistent with the above data and analysis. They stated while mandatory reporting is inappropriate, reporting with immunity is appropriate if the physician believes patient poses risk and has not self-reported. Physicians, they added, should enjoy immunity regardless of whether they report as long as their decision is in good faith. The state's driving administration should be the final arbiter of eligibility. In 2007, the AAN updated its position statement, adding that no road test should be required for seizure patients based on that etiology alone. Further, better tools should be evaluated to determine driver fitness, and additional transportation resources should be developed for those who can no longer drive. A seizure-free interval of at least three months is recommended.
RECOGNIZING AND RANKING RISK
Although there is an ethical duty to report a patient if the physician's well-supported clinical judgment is that the patient will pose preventable, serious danger on the road, there is still uncertainty when it comes to determining whether that danger is present. Evidence shows seizure-free intervals of at least six–twelve months, few non-seizure-related accidents, and continuing antiepileptic drug titration are associated with reduced risk, according to a 2012 report in Epilepsy & Behavior. Prospective studies are still being done assessing the predictive value of simulated tests and road safety of epileptic patients. Anticipating which patients are likely to drive despite possible risks may be as important as predicting which patients will be safe. A 2012 study of Brazilian seizure patients in Epilepsy & Behavior found that male gender, low education level, and later age-of-onset are associated with increased risk of motor vehicle accidents.
BACK TO THE CASES
What should you do about your first patient, the 18-year-old who has not heeded your warning not to drive? He is clearly a danger given his poorly controlled epilepsy; there is a morally compelling reason to report him. In contrast, your second patient is medication-compliant and has a well-established pattern of rare, strictly nocturnal seizures. If the state allows it, she would be an ideal candidate for an accommodation by the medical advisory board. In both cases, it is important to be aware of specific state law on reporting and accommodations.
Dr. Kass is associate professor of neurology and medical ethics, and director of the neurology residency program, at Baylor College of Medicine in Houston, TX. Ms. Wax is a medical student at Baylor College of Medicine.
FOR FURTHER READING:
• American Medical Association Declaration of Professional Responsibility: Medicine's Social Contract with Humanity 2001: http://bit.ly/R70SOe
• Bicalho MAH, et al. Socio-demographic and clinical characteristics of Brazilian patients with epilepsy who drive and their association with traffic accidents. Epilepsy Behav
• Classen S, et al. Evidence-based review on epilepsy and driving. Epilepsy Behav
• Crizzle AM, et al. Associations between clinical tests and simulated driving performance in persons with epilepsy. Epilepsy Behav
• Drazkowsi JF, et al. Frequency of physician counseling and attitudes toward driving motor vehicles in people with epilepsy: Comparing a mandatory-reporting with a voluntary-reporting state. Epilepsy Behav
• Elliott JO, Long L. Perceived risk, resources, and perceptions concerning driving and epilepsy: a patient perspective. Epilepsy Behav
• Kwon C, et al. Motor vehicle accidents, suicides, and assaults in epilepsy. Neurology 2011; 76(9):801–806.
• McLachlan RS, Starreveld E, Lee MA. Impact of mandatory physician reporting on accident risk in epilepsy. Epilepsia
• Thomas RH, et al. Awake seizures after pure sleep-related epilepsy: a systematic review and implications for driving law. J Neurol Neurosurg Psychiatry
• Winston GP, Jaiser SR. Western driving regulations for unprovoked first seizures and epilepsy. Seizure