This chapter is about treating people who are sick. The book is concerned with people who have epilepsy, or who appear to have epilepsy, but these remarks also have broader applications in medicine. They do not concern the details of medical, psychological, or surgical treatments of epilepsy. They pose questions and suggest some attitudes about treating people based on the fact that all treatment takes place in some sort of psychological climate and that the better that climate is, the better everybody will feel. Nor is this entirely a plea for “evidence-based medicine”¹¹ because it is sometimes the evidence that, on reflection, has changed since it was raised.²⁴

The general aim is to encourage careful consideration of a range of sense data that are available to therapists for monitoring their therapies. For example, it almost seems to follow necessarily that convulsions (epileptic seizures) should be treated by anticonvulsants or antiepileptic drugs (as they are rather quaintly called). A glimpse at practice tends to confirm this. The logic is similar to the treatment of infections by antibiotics and of depression by antidepressants. That logic, however, soon breaks down. We find we are obliged to consider the duration, scale, type, and origin of the illness and the age, size, resources, and situation of the patient^5,11,25 and any basis the convulsions have in nameable disease. Even then, seizures may continue, and other problems persist. In making a diagnosis for a sick person, naming the illness is not enough. “Diagnosis” requires a larger consideration. It derives from a root word meaning to perceive, to distinguish, to discern, to have knowledge. Diagnosis requires us to know about the sick person. What disease might underlie this illness? What is the situation, the predicament, of this person?²³ Who is this sick person, what life is the patient leading, and what is the patient’s agenda, here and now, with me, today?^3,13

The idea that a sick person with an illness creates a social problem that connects back to the medical problem is usually seen only in the sociological literature.^7,16 The examination of the treatment of epilepsy from such a perspective can be illuminating. There is nothing trivial or metaphorical about epilepsy.²² Seizures, convulsions, fits, and bad turns all have metaphorical meanings, however, as well as meanings in the language of everyday life, most of them negative. To be diagnosed and treated for epilepsy is something of an ordeal in itself.

Making a diagnosis is an essential prerequisite to being able to help a sick person, but “the diagnosis” is an abstraction. The reality is the treatment that follows, whether reassurance, regimen, manipulation, medication, or surgery. Diagnosis, the knowledge and revelation of the problems that are agreed to exist, may not have been arrived at easily for the patient with epilepsy. The patient may have been pleading the case for his or her sickness to be recognized for a long time before a diagnosis was finally awarded. There could be anger at previous failure and time wasted. That could explain a negative or guarded attitude even toward the team that eventually made the diagnosis. On the other hand, even if the physicians exercised their utmost skill, patience, and technology to achieve the diagnosis, it might not be what the patient wanted because it demands ownership of the sickness with all its perils and stigmata or contradicts the patient’s firmly held view of it. “Please doctor,” the father of one patient pleaded, “take away this diagnosis, it will ruin my son’s life.” Thus, subsequent treatment might be resisted. Sometimes a diagnosis of epilepsy is ascribed on scant evidence, inadequate information, faulty logic, or with casual indifference. Thus, an illness is foisted on a patient. Occasionally the diagnosis and treatment for epilepsy might suit the patient in some ways, so the patient cleaves to it, and subsequently even a great authority might not succeed in changing the patient’s view even though it is wrong and irrational.

These different ways of coming to the diagnosis affect the attitudes of patients and caregivers to the treatment. Treatment confirms the reality of the patient’s diagnosis, whether accurate or wanted or not. Some examples of these processes can be given: The infantile spasms were brief and few and not distinctly described, but they were eventually seen by the physician, captured on electroencephalogram (EEG), and investigated to show the tuberous sclerosis of which the previously entirely healthy father proves to be the carrier. He now bears a “responsibility” for his son’s condition. The onset of the brief nocturnal disturbances in this young woman was soon diagnosed as epilepsy, but this precluded her from driving and ruined the career that depended on that. The onset of focal motor seizures with some subjective feelings was treated successfully for several years with medication before breakthrough seizures led to investigations that revealed the cerebral tumor. In each case there is a negative side to the “good news” of achieving a diagnosis. Diagnosis and treatments, on one hand, bring relief and hope of cure, but, on the other hand, they convey the reality of what exists, confirm the worst fears, or require the sick person to submit to the ordeal of treatment, which may be a significant burden. At times, the procedures providing the relief of the sickness or the prospect of relief prove to be so hazardous to the patient that the patient feels the need to undermine them. That would be one reason for a therapist to feel frustrated by a patient.

Much of the process of medicine is unseen by practitioners, who take for granted the bizarre environment in which they
work, which can be terrifying to patients. Diagnosis is achieved through a series of rituals. Some are verbal, such as asking a whole series of unlikely questions (called taking a history); others require apparatus, sometimes of gargantuan dimensions, for which purification and special clothing are required (called routine investigations). The modest EEG by which “they took the electricity from my head, doctor” is nowadays lodged in a bank of computers, TV screens, analog devices, and so on. In such a situation the patient must perform appropriately in order to “qualify” for a diagnosis. Days and days of anxious waiting might be required to capture even a single seizure.²⁶ Failure to achieve the wanted diagnosis leads to the limbo of unknowing and disqualifies the patient from treatments available to those who do qualify. That is, for them, another kind of failure. An escape with dignity has to be incorporated in our programs of investigation, which are, to patients, not so much diagnostic as a determination of whether they qualify for a treatment.

The ordeal of being passaged through our medical temples, at times without a priestly guide, reaches its zenith in neurosurgical treatment. Consider the special rooms, the ritual shaving of the head, the masks and gowns, the apparatus, the lying-in in recovery. What we require of patients generally is that they endure situations that are awesome, interventions that are perilous, and ministrations that are distasteful. The fact that they are tolerated with surprising equanimity for the most part allows us to overlook their impact. The unspoken bargain for the patient is that it is all done in the hope of benefit. It is about a bargain. Sometimes it is not a very good bargain.