J Epilepsy 1993;6:185-188 © 1993 Butterworth-Heinemann
Ethical Dilemmas in Epilepsy and Driving Judy Ozuna
In states that do not have mandatory physician reporting of seizures, clinicians face the ethical dilemma of whether or not to breach confidentiality of poorly controlled patients who continue to drive. In making this deliberation, one should consider both the probability and magnitude of harm posed by continued driving of an individual patient. When probability and harm are low or when probability is high but harm is low, there is generally no moral obligation to breach confidentiality, and it would be wrong to do so. The most difficult situation is when probability of harm is low but magnitude of harm is high. Judgments to breach confidentiality in these situations should also include assessment of risks and benefits to the patient and to society by taking such action. Ultimately, each patient must be judged individually. Key Words: Epilepsy--Driving--Ethics--Confidentiality.
Previous papers have discussed the legal issues of driving and epilepsy, particularly the pros and cons of physician reporting of patients' seizures to a state's licensing agency (1-3). This paper will address moral dilemmas of clinician reporting in states that do not have mandatory physician reporting. Washington is one of these states. The author has deliberated often about whether breaching patient confidentiality is ever morally justifiable. Six states (California, Delaware, Nevada, New Jersey, Oregon, and Pennsylvania) currently have mandatory physician reporting (1), which means that the physician must report a patient's seizure to the state agency (usually the health department, which then relays the information to the licensing department). These states have established legal immunity from liability for breach of confidentiality. However, this approach is not necessarily ethical. Besides, the overall benefit of mandatory reporting is questionable,
Received March 1, 1993; accepted March 4, 1993. From the Department of Neurology, Veterans Administration Medical Center, and Department of Physiological Nursing, University of Washington, Seattle, WA, U.S.A. Address correspondence and reprint requests to J. Ozuna at Neurology 127, VA Medical Center, 1660 South Columbian Way, Seattle, WA 98108, U.S.A.
owing to reports of potential for breakdown of the physician-patient relationship and decreased reporting of seizures by the patient to the physician (1-3). Critics of mandatory physician reporting claim that it leads to both noncompliance with driving restrictions and compromised medical treatment of seizures because of inaccurate patient reporting of seizures. On the other hand, states that require patient reporting of seizures also have problems. In a study by Salinsky et al. (2), 44% of patients would not report seizures to the state under patient reporting laws. This could mean that patients with active seizures would be driving and posing a health risk to themselves and the public. From a legal perspective, c o m m o n law, case law, and tort doctrine support the principle that in situations that constitute substantial foreseeable public risk or danger, physicians are obligated to report people with seizures (1). The key element here, of course, is what constitutes a foreseeable public risk. This is a moral, as well as a legal issue, which will be explained below. In presenting the moral arguments about clinician reporting of seizures in states that do not have mandatory reporting, this author chooses the utilitarian theory as the ethical framework. Utilitarianism holds that the moral rightness of actions is determined by I EPILEPSY, VOL. 6, NO. 3, 11993 !85
J. OZUNA their consequences. In oversimplified terms, this can be stated as "the ends justify the means" and "we ought to promote the greatest good for the greatest number" (4). In contrast, a deontological framework would hold that the moral rightness of an action is determined by whether it follows an appropriate moral rule, regardless of the consequences, for instance, "one should always tell the truth" or "confidentiality should be upheld in all cases." Some ethical principles that are useful in presenting these arguments are described below. Autonomy mandates respect, in attitude and action, of an individual's right to hold a view, make decisions, and take actions based on personal values and beliefs. This principle imposes on the clinician the duties of disclosure, seeking consent, maintaining confidentiality, and protecting the patient's privacy (4). The last two, confidentiality and privacy, are principles that are in conflict with the clinician's duty to prevent potential harm in the case of driving with epilepsy. This duty is related to the second ethical principle of beneficence/nonmaleficence, which is to do good and avoid harm or remove harmful conditions. This principle often goes hand in hand with paternalism, which is the principle of interfering with a person's action if that interference protects the person against his or her extremely and unreasonably risky actions, i.e., driving a car in the presence of poorly controlled seizures. While autonomy addresses the individual, beneficence may address either an individual (the patient) or the community at large. Hence, for the clinician, there may be competing duties of respecting patient autonomy versus protecting the patient and the public in general from harm. Justice is the principle of treating everyone fairly and equally. In terms of reporting seizures, justice applies to both the individual clinician's biases toward, or against, certain types of patients and society's obligations to various groups, such as people with seizures. Ethicists hold that a rule of confidentialityis a prima facie obligation, and anyone who makes an exception bears the burden of proving that some other moral obligation outweighs the obligation of confidentiality in the circumstances (4). The challenge for a clinician of a patient with epilepsy is to make the best moral judgment as to whether or not to breach the patient's confidentiality for the sake of a "greater good." This good can be viewed as protecting the patient from harm as well as protecting the community at large. In general, the clinicians' duty to a particular patient is stronger than his or her duty to less defined groups. Before considering breaching confidentiality,how186 J EPILEPSY, VOL. 6, NO. 3, 1993
ever, ethicists say one must try other, less egregious means to achieve benefit and avoid harm. This would include encouraging the patient to report his seizures directly to the licensing department, or at least, and especially, not to drive. Clinicians realize that regardless of having a suspended license, some patients [917% in one study (2)] will continue to drive. Clinicians should implore patients to use their own good judgment about driving when their safety to drive is unclear. This includes patients who cannot adequately describe their seizures or who are unaware of what they do during a seizure. Many say they just continue driving if they have a partial seizure and that they obey traffic signals and rules of the road, even though they may pass the correct exit or turnoff. It is difficult to make decisions about driver safety because most of the clincian's information is based on what the patients tells him or her. Most of the therapeutic and advisory decisions made by clinicians are based on how much they belive in what their patients tell them. Sometimes, if the clinician believes a patient is not using good judgment about driving, recounting a true story about the grave consequences of having a seizure while driving may convince him or her to stop driving. The following story is true. A hospital employee was riding her bicycle along a street in a suburb one Sunday. While her husband was riding a short distance ahead of her, she was hit from behind by a car driven by a man who was having a seizure. She was dragged 200 feet, crushing her pelvis and almost completely severing her right hand, in addition to causing several cuts and abrasions. She spent the next several months recovering. The man later said that his seizures were never completely controlled, but that he decided only to drive on Sundays, when traffic was usually light. Unfortunately for the employee, she decided to ride her bike on Sunday for the same reason. Sometimes these morally acceptable tactics do not work, and one must decide if breaching confidentiality, in this case, informing the authorities of a patient's seizures, is morally justifiable. Beauchamp and Childress (4) suggest that one consider both the probability and the magnitude of the potential harm when deciding whether or not to breach confidentiality. As one's assessment of the situation approaches both high magnitude and high probability of harm, the weight of the obligation to breach confidentiality increases. Likewise, if there is a low probability of a minor harm, there is generally no moral obligation to breach confidentiality, and it would be wrong to do so. If there is a high probability of minor harm, there is generally no moral obligation
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to breach confidentiality, and it may be wrong to do so, particularly when the breach may produce other harms. The most difficult situation is when the probability of harm is low, but the magnitude of the harm is high. This would be represented by the case of the employee on the bicycle or of a patient known to the author who drove into a telephone pole during a seizure, totalling the car and causing a fractured arm in his wife who was a passenger. The clinician must make his or her best judgment about probability and magnitude of harm. Beauchamp and Childress say this judgment must also include risk-benefit assessments. Among the risks of breaching confidentiality are the loss of trust by the patient in the provider, the potential reluctance to report seizures, and the consequent compromised medical therapy. Another risk is the loss of independence for the patient. More serious risks would be loss of job due to lack of transportation and inability to obtain groceries and run errands. On the other hand, availability and use of public transportation or help from family or friends would lessen these risks. The potential benefits to be gained by reporting affect both the patient, including his family, and the public in that injury or death and property damage to the involved motor vehicles would be avoided. This assumes, of course, that the state revokes the driver's license, and the patient honors the revocation by not driving. Another challenge for the clinician is to determine the likelihood of a motor vehicle accident with a given type of seizure. Generalized tonic-clonic seizures pose obvious consequences. Partial seizures are the most troublesome. In most cases, one must rely on witnesses' reports or what the patient describes. At best, these descriptions are unreliable, and at worst they are unlikely to provide the clinician with sufficient information to make a reasonable decision about safety to drive. However, information about the presence and duration of an aura, seizure frequency, and frequency and location of driving, and whether the patient has ever had a seizure while driving might help the clinician make a decision. In addition, factors that influence seizure frequency, such as sleep deprivation, intercurrent illness, and medication noncompliance must be rectified before making a decision based on seizure frequency. Spudis et al. (5) have proposed what they consider are individualized guidelines for determining an epileptic patient's fitness to drive. The guidelines are based on seizure type, etiology (which in their view closely relates to prognosis), and number of attacks in the prior 2 years.
The following questions may guide the clinician in determining whether or not to breach confidentiality. Did the patient ever have a seizure while driving? If the answer is no, and the clinician trusts the patient and believes the probability of having a seizure is slight, then the probability and magnitude of harm is low and breaching confidentiality by reporting the patient to the state would not be justified. However, if the patient ar~swers yes, further questioning is in order. Did the patient have a warning? If so, did the warning allow enough time for the patient to pull off the road or get to a safe place? If these are answered yes, the probability and magnitude of harm is low and breaching confidentiality would not be justified. However, if the patient says that he or she has had a motor vehicle accident because of a seizure, the probability that a seizure while driving may occur again is higher, as is the magnitude of harm. The clinician would be justified in reporting this patient to the state. However, one should consider precipitating factors such as loss of sleep, noncompliance, and intercurrent illness and rectify these problems before breaching the confidentiality rule. These and other issues were addressed formally by representatives of the American Academy of Neurology, the American Epilepsy Society, and the Epilepsy Foundation of America, who, in 1991, developed consensus criteria for licensing persons with epilepsy to drive (6). These recommendations can help the clinician in his or her deliberations. Highlights of these recommendatons follow. 1. The seizure-free interval should be 3 months; however, modifiers, both favorable (e.g., simple partial seizures, presence of a consistent and prolonged aura, seizures precipitated by correctable causes) and unfavorable (e.g., noncompliance, previous bad driving record, frequent seizures), could alter the interval. 2. Clinicians should not be required to report their patients, but they should advise their patients about medical risks, legal requirements, and the physician's own recommendations about driving. 3. Clinicians must have immunity for choosing not to report a patient to the licensing department, if in their best judgment there is no indication to do so. In addition, the clinician should have immunity for reporting or re-reporting patients who have loss of consciousness or bodily control. The author's institution has a recommendation that achieves a reasonable compromise between the opposing ethical principles of patient autonomy (maintaining confidentiality) and paternalism based on beneficence/nonmaleflcence. The'clinician who suspects a patient with epilepsy is unsafe to drive informs j F_.PILF_~SY,VOL. 6, NO. 3, 1993
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the medical records department, who then sends a letter to the state's department of licensing. The letter states that the person should be re-evaluated for a driver's license. This recommendation allows the provider to identify "at-risk" drivers without breaching confidentiality of the patient's medical information. Concern about driving safety in people with epilepsy has been present since the automobile became a widely used source of transportation (7). Unfortunately, we still do not have adequate means to determine who is and w h o is not safe to drive. Clinicians must use their best medical judgment to make these determinations. They then must consider the aspects of their state's driving laws and legal consequences of their judgments. If they practice in one of the 44 states that do not require clinician reporting of seizures, they must also consider the moral issue of breaching or maintaining the confidentiality of patients with uncontrolled seizures who continue to drive.
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References 1. Krumholz A, Fisher RS, Lesser RP, Hauser WA. Driving and epilepsy, a review and reappraisal. JAMA 1991; 265:622-6. 2. Salinsky MC, Wegener K, Sinnema F. Epilepsy, driving laws, and patient disclosure to physicians. Epilepsia 1992;33:469-72. 3. Andermann F, Remillard GM, Zifkin BG, Trottier AG, Drouin P. Epilepsy and driving. Can J Neurol Sci 1988; 15:371-7. 4. Beauchamp TL, Childress JF. Principles of biomedical ethics. New York: Oxford University Press, 1989. 5. Spudis EV, Penry JK, Gibson P. Driving impairment caused by episodic brain dysfunction, restrictions for epilepsy and syncope. Arch Neurol 1986;43:558-64. 6. American Academy of Neurology, American Epilepsy Society, Epilepsy Foundation of America. Driverlicensingandepilepsy. Landover, MD: Epilepsy Foundation of America, 1992. 7. Siegel AM. Driving and epilepsy. Conn Med 1988;52: 70-1.