As is true in most of medicine, the real narratives are not nearly so neat. First and foremost, establishing a diagnosis via video EEG is both difficult and costly. The seizure has to happen during the period in which the patient is hospitalized and under observation. Most patients’ seizures are not predictable enough to ensure that the period of time required would be a reasonable one. Days of hospital treatment are staggeringly expensive, as is round-the-clock monitoring. For hundreds of thousands of Americans who suffer from psychogenic seizures (a recent estimate puts the range between 135,000 and 540,000), video EEG is not a realistic option. Even those patients who do receive a definitive diagnosis are not likely to capitulate and thus heal themselves. Patients may have little or no conscious awareness that their thoughts and feelings are driving their dramatic bodily responses. Although making patients aware that their seizures are psychological in origin is an essential component of treatment, it is rarely, in and of itself, curative.
The neuropsychologist Dalma Kalogjera-Sackellares describes the complexity associated with this shift in thinking by underscoring that for most patients with psychogenic nonepileptic seizures, their seizures have long been conceptualized by them, by their family members, even by their doctors as something they have rather than something they do. Once the diagnosis of psychogenic nonepileptic seizures is made, the role of psychotherapy is to help “the patient realize, in a gradual and reasonable way, that spells are something a patient does in order to deal with something that disturbs him, [that] spells have a purpose in his life.” The goal of this reconceptualization is to shift the nonepileptic seizure from being a symptom of a disease to being a sign of distress, of difficulty coping. The ability to acknowledge and accept that shift, according to Kalogjera-Sackellares, is, “in its own right, a strong positive prognostic factor. On the other hand, patients who continue to view their spells as having nothing to do with them psychologically have a poor prognosis.” If they will not acknowledge their seizures as psychologically based, they can’t begin in earnest to discover what might be causing them.
• • •
These intersections of neurology and psychiatry are studied and treated by doctors in the specialized field of neuropsychiatry, a field that inhabits a narrow interspace at the confluence of psychiatry and neurology. Brown University neuropsychiatrist and behavioral neurologist W. Curt LaFrance Jr. is a world-renowned expert in the treatment of neurologic symptoms that arise from psychiatric illness. He specializes in the diagnosis and treatment of conversion disorders, such as nonepileptic seizures and psychogenic movement disorders, in which psychic conflicts are converted into physical symptoms.
LaFrance underscores that the risks associated with misdiagnosis and overtreatment of psychogenic nonepileptic seizures—as when doctors misdiagnose a lengthy nonepileptic seizure as status epilepticus—can be grave. “Complications of pseudostatus are iatrogenic,” he writes. Iatrogenesis, from the Greek iatro-, “physician,” and -genesis, “the origin.” This means that medical problems brought about by pseudo-status, or nonepileptic status, have nothing to do with the seizure itself but rather with the medical response to it. Iatrogenic complications, therefore, are caused by those of us whose Hippocratic edict is to first do no harm. According to LaFrance, these complications found in the medical literature include the effects and potential hazards of every single medical intervention employed. In order to stop a patient from seizing, doctors may insert catheters into major veins, which can bring about blood loss or infection. They may administer high-dose sedatives, requiring patients to be intubated if their breathing slows too significantly. Rarely, through their interventions, doctors can cause respiratory arrest. “Intubation is more common in pseudostatus rather than status epilepticus,” LaFrance writes, because psychogenic nonepileptic seizures last longer and do not respond to antiepileptic drugs.
I met Dr. LaFrance for lunch in a local bakery on an unseasonably warm November day to talk with him about my encounter with Phyllis and the mystifying nature of psychogenic nonepileptic seizures. Over sandwiches and gingerbread cake, Dr. LaFrance explained that the difficulty of distinguishing epileptic seizures from their nonepileptic counterparts is only part of the equation. The larger issue, he believes, has to do with the inherent discomfort doctors have with helplessness. In an emergency situation, how well can they sit with the fact that they cannot stop the patient from seizing? The answer is partially physician-dependent, of course, but it turns out for most of us the answer is . . . not too well.
“The psychiatrists are sometimes better at this than their neurology or emergency-medicine colleagues,” he began. “You know, we neurologists can inject you with medicine to bust a clot and reverse the effects of an oncoming stroke. A person can come into the ER with new-onset weakness or paralysis, and we restore full function with these powerful drugs. Emergency docs are used to performing that same kind of heroic intervention,” he said. I nodded. Of course this was true. My friends who are doctors in the ER often see my patients before I do. They empty a woman’s stomach from her overdose and cleanse her liver from the toxins she ingested. They intubate her if she has taken enough pills or poison to stop breathing; they resuscitate her if her heart has stopped. They suture knife wounds, desperate and deep, that my patients have sliced into their arteries, then give their bodies back the pints of blood that they have lost. They find the lodged bullet from the self-inflicted gunshot that somehow missed its mark.
“So,” LaFrance continued, “in the case of a nonepileptic seizure, it’s incredibly hard for some doctors to sit with a patient and watch her suffering, when there is ‘nothing to be done.’” Don’t just do something, I think, stand there. “We have this epilepsy algorithm, right? And on the side of seizures, we have a very specific set of steps to follow. We try this, and then we do that, and if that doesn’t stop the seizure, we keep going down the line trying different interventions.” I nodded, thinking of the rectal sedatives I had administered to Phyllis when her convulsions weren’t abating. “On the other side of the algorithm, for nonepileptic seizures there is nothing to do. You wait it out. It’s tough. The doctors watching a patient in status are between a rock and a hard place. They wonder, ‘If the seizure persists, could it cause damage?’” He paused. “So what we see sometimes, as a result, are some patients with nonepileptic seizures who are intubated, paralyzed, put into medical comas because the doctor had to do something—she had to stop that seizure.”
LaFrance and others have written extensively about the costs of this iatrogenic harm, which, it turns out, is not at all uncommon. A 2003 paper in the Journal of Neurology reported that 27 percent of patients with unrelenting psychogenic nonepileptic seizures had been admitted to the intensive-care unit because doctors had mistakenly treated them for status epilepticus.
LaFrance summarized the issue by getting to the core of how medical students and doctors are taught to approach healing. “I can stop your seizure,” he said, “but can I be there—really be with you—as you are suffering?”
To describe this being with patients as they suffer, LaFrance employed a verb frequently used in a biblical context: “to abide.” As in “abide with” or “abide by.” It is a powerful term that embodies diligence and, importantly, inaction. Its definitions, dating back to 1120, read like a recitation of devotion, a mantra of fidelity: “to remain with, to hold to, remain true to. To endure, stand firm or sure. To wait till the end of, hear through. To await defiantly. To face. To encounter, withstand or sustain. To suffer, to bear, to undergo.” It is not, I suspect, a word that most people are inclined to associate with their modern-day medical care.
LaFrance believes that abiding with is central to the care and treatment of his complicated patients. “They come to me,” he explained, “and they say, ‘Doc, everyone told me you’re the one who’s going to cure me,’ and I say to them, ‘Well, they told you wrong, because I can’t do that. But I can walk with you in this journey
, and we can work together to understand what’s going on that’s causing you these problems that you’ve been having.’”
I realized, listening to Dr. LaFrance, that I had expected him to fill me in on cutting-edge treatments emerging in neuropsychiatry or to share with me some of his legendarily sharp diagnostic skills. I had thought he might direct me toward some new body of evidence from which his clinical success had come. Instead he had asked me to think about how well we as doctors can cope with the suffering of others and about how and why we distance ourselves from others’ pain.
As we talked, I was struck by the tenuous position that Dr. LaFrance occupies in a patient’s treatment. Oftentimes he must deliver the news to patients that their seizures are in fact psychological, not neurological, in origin. I told him that I imagine people must, in response, feel angry, misunderstood, or ashamed.
“You have to help them understand,” LaFrance replied. And as he explained, I realized that by “them” he meant both the population of patients suffering from nonepileptic seizures and the clinicians involved in their care.
First and foremost, LaFrance explained, clinicians must appreciate that patients with psychogenic nonepileptic seizures are not consciously trying to trick people. Their seizures are classified as a somatoform disorder, or a disease in which psychological symptoms manifest themselves physically.
On the other hand is a category of symptoms classified as malingering. “Malingering is mendacity. It’s lying,” he said bluntly. And he is right. In this category are prisoners who intentionally feign paralysis in order to be transferred out of prison and into a medical hospital or drug addicts who claim to be in extreme pain in multiple emergency rooms in order to acquire prescriptions for opiates. These are the patients who pretend not to know which hand holds the coin in Dr. Charles Scott’s coin-in-the-hand test. Malingerers make up fewer than 5 percent of the patients who seek treatment for somatoform symptoms. True somatoform disorders, in contrast, are not conscious and so do not fall into the category of deceit.
Nonetheless, just as I felt that Phyllis had fooled me, clinicians often feel duped by psychogenic nonepileptic seizures and other somatoform symptoms. This leads doctors and nurses to regard the somatoform illnesses as not real. Hence, for example, the historic classification of psychogenic nonepileptic seizures, catatonia, and other somatoform illnesses as hysteria. Hence the problematic and still-widespread nomenclature of pseudoseizures instead of psychogenic nonepileptic seizures. Pseudo-, from the Greek meaning “false or falsely; to deceive or cheat.” By the twentieth century, the prefix had come to designate whatever noun that followed it as pretended, counterfeit, spurious, a sham.
In From Paralysis to Fatigue, Edward Shorter reiterates the diagnostic point that unlike in malingering, there is nothing intentionally deceptive or false about somatoform disorders. “From the patient’s viewpoint,” Shorter writes, “psychosomatic problems qualify as genuine diseases. There is nothing imaginary or simulated about the patient’s perception of his or her illness. Although the symptom may be psychogenic, the pain or the grinding fatigue is very real. The patient cannot abolish the symptoms by [simply] obeying the . . . injunction to [do so], for what he or she experiences is caused by the action of the unconscious mind, over which he or she by definition has no rational control.”
The fact remains, however, that patients who are told that the origins of their seizures are psychological rather than neurological may also wind up hearing this proclamation with the same implications of sham and deceit. LaFrance said he attempts to circumvent that outcome in the way he shares the diagnosis with patients. “I focus on the fact that this is good news,” he explained. “I tell them, ‘You don’t have epilepsy. It’s bad news to have abnormal brain-cell firing causing epilepsy. You don’t want to have a tumor or something else that is anatomically wrong with your brain. So a diagnosis of psychogenic nonepileptic seizures should be reassuring. This is not some rare, never-before-seen collection of weird symptoms and spells. This is a clinical entity that is well understood and treatable. This is something that we can work on and fix.”
As Dr. LaFrance spoke, I was reminded of the psychologist Stanley Standal, who argued that for therapy to work in any meaningful way the therapist must hold his patient in unconditional positive regard. Not unlike the parental or spousal ideal of unconditional love, a refusal to judge makes the therapeutic relationship a safe one in which very deep, often primitive conflicts may be revealed. Dr. LaFrance offers just this kind of space by not judging his patients. The hope that Dr. LaFrance and his patients share is that, through their work together, the patients’ psychic conflicts—which have become so severe as to take shape in seizures or paralysis—can emerge to be dissected and made plain.
Therapists and doctors are human, of course. And thus this nonjudgmental stance is neither effortless to employ nor consistently offered. Patients may unwittingly play into our own discomforts, our own insecurities.
As my lunch with Dr. LaFrance drew to a close, I told him the story of Phyllis: the blue buzzer, her violent seizure, my confusion as to how best to proceed.
“What were you feeling in the moment?” he asked me.
I paused to consider the question, then answered. “Fear,” I said.
“Fear of what?” he asked.
A torrent of responses ran through my mind: That I was missing something. That I should have been doing something differently. That Phyllis would decompensate as a result of my inaction and be in real, lasting danger. That the staff would see that I had mishandled an emergency and consider me an incompetent doctor. I told him these fears, or most of them.
“So her seizure became about you, huh?” LaFrance asked me gently, grinning. I can stop your seizure, but can I really be with you as you are suffering? Phyllis’s seizure made me doubt my own capacity as a doctor, and my defensive reaction to that discomfort—and also that of the eye-rolling nurses—was to resent her, as if there were some malicious intent driving her to trick or mislead us. Sham, falsehood, deceit.
Dalma Kalogjera-Sackellares describes this perceived deception between doctor and patient in a mind-blowing but logical dynamic she calls the double impostor scenario. In this scenario, Kalogjera-Sackellares asserts, the patient responds to the news that his seizure or other somatoform disorder is “not quite genuine” by feeling that he himself, as a patient, is therefore “not a genuine patient.” Consequently the patient comes to feel “like an impostor and his task, psychologically, at this point, will be to prove that he is not an impostor.” Proving that he is not an impostor may mean subconsciously causing his symptoms to escalate or developing new symptoms. It could mean calling into question the doctor’s findings, intelligence, or credentials.
The double impostor scenario becomes even more wildly interesting as it begins to affect the patient’s doctor, in whom, Kalogjera-Sackellares writes, “a parallel psychological process is likely to occur.”
The doctor must face the “sometimes very dramatic physical manifestations” of the patient’s disorder, without the anchor of an identifiable physical illness. The doctor, Kalogjera-Sackellares writes, must first “rule out a possible CNS (central nervous system) disorder. Even after this has been ruled out by an extensive evaluation, there may remain a lingering doubt that something was missed, or worse, that a CNS disorder can never really be ruled out in the future . . . with complete confidence. Thus, [the doctor faces] a situation which promises no real closure and which carries with it a threat of failure. Not being able to discover the underlying CNS pathology can make the neurologist feel like an impostor also, because the ability to perform that specific task is the unique contribution of his profession to medical science and is also one of the key aspects of his professional self-definition.” Hence the two impostors.
The patient, Kalogjera-Sackellares asserts, fears that the doctor will expose that he is not a true patient. The doctor fears he is not c
orrectly assessing the patient’s symptoms and that he will miss something neurological, which will expose that he is not a competent doctor. Kalogjera-Sackellares warns that this dynamic sets the doctor up not only for fear but also for shame. Shame is a more difficult feeling to manage psychologically than fear, so in defense, Kalogjera-Sackellares argues, clinicians transform their shame into anger. And they direct that anger toward their patients, as I did when Phyllis stopped seizing, opened her eyes, and asked me for ginger ale.
It seems obvious to say it, but what Kalogjera-Sackellares is getting at is this: It is hard to be empathetic and helpful to a patient if you see her as a threat to your credibility.
• • •
The risk of the double impostor scenario, or at the very least the risk that patients with somatoform disorders may be treated with mistrust and resentment, is a real and unfair one. And yet the historical treatment of these disorders—known collectively throughout previous centuries as hysteria—was far more grievous. Depending on the doctor and the era, hysteric patients were likely to be shown off, titillated, or terrorized.
The origins of the word “hysteria”—from the Greek for “womb”—squarely designate the illness as an exclusively female one. The seventeenth-century British physiologist William Harvey—who famously dissected the bodies of his own sister and father en route to discovering how blood was pumped through the body via the circulatory system—shared the widely held belief in the power of the uterus to wander about the body, wreaking both physical and psychological havoc. “For the uterus is the most important organ,” he wrote, “and brings the whole body to sympathize with it. When the uterus either rises up or falls down, or is in any way put out of place or is seized with spasm—how dreadful, then, are the mental aberrations, the delirium, the melancholy, the paroxysms of frenzy, as if the affected person were under the dominion of spells, and all arising from unnatural states of the uterus.”
Falling Into the Fire: A Psychiatrist's Encounters with the Mind in Crisis Page 19
