Somebody walks into a doctor’s office, and then there is questioning, tests are ordered, and a diagnosis is established; a treatment plan is set in place and upon following medical recommendations, the patient’s condition improves. That is a common, albeit ideal, course of events. In healthcare, however, there are times when there is not an easy path to recovery, and several back and forth clinical visits to a plethora of medical specialists follow for consultation. Nevertheless, the patient’s condition does not appear to be improving…
Even though some diagnoses may get quite close, overall they keep missing the bull’s eye: an accurate enough diagnosis to induce patient improvement upon adequate treatment. The effort is great, but the results are not. What is going on in a case as such? What is going to be then the patient’s prognosis?
Although the former narrative could easily be a plot for a horror science-fiction novel it is actually the beginning of a medical journey that in 2009 brought the New York journalist Susannah Cahalan to the brink of madness. Once recovered from her particular nightmare she was encouraged to write an article about it for the New York Post, the paper for which she had always been working. Moreover, after the article, came a book Brain of Fire: My Month of Madness; a well written, and painfully researched, a New York Times bestseller where she fully develops her struggle to find medical answers to her symptoms.
The book title bears the term “madness”, which the Oxford English Dictionary defines as Insanity; mental illness or impairment, esp. of a severe kind; (later esp.) psychosis; an instance of this. (…)
Did she become unexpectedly mad, without any apparent cause? Her main symptoms, experienced amid several other minor ones, were seizures and encephalitis, and altogether they contributed to more than a few diagnoses:
- Delusional parasitosis
- Bipolar disorder
- Capgras syndrome
- Postictal psychosis (PIP)
- Dissociative identity disorder (DID)
- Schizo-affective disorder
Therefore, she underwent treatment with numerous medications including Geodon® (ziprasidone), an antipsychotic medication, Keppra® (levetiracetam), an anti-epileptic or anticonvulsant drug, and Haldol® (haloperidol), another antipsychotic drug used to treat schizophrenia. However, none of them appeared to help. The reason was that none of those diagnoses was accurate enough. It was for that that the treating team suggested a brain biopsy, the results of which were conducive to a definitive diagnosis of compromised NMDA (N-methyl-D-aspartate) receptors (NMDA receptors are vital to learning, memory, and behavior, and they are a main staple of our brain chemistry. If these are incapacitated, mind and body fail – Cahalan) and to a treatment with intravenous immunoglobulins (IVIG).
It is difficult, if not almost impossible, to figure out what went wrong with Susannah’s case until the right diagnosis was established. Nevertheless, due to the nature and her illness, we can speculate with three different possibilities:
- The disease, anti-NMDA-receptor encephalitis, begins with normal flu-like symptoms that derive to psychiatric issues (anxiety, insomnia, fear, grandiose delusions, hyperreligiosity, mania, paranoia) prompting most patients to seek mental health professionals. Moreover, if they experience seizures they also tend to seek help in a neurology clinic.
- The disease, newly described, was still unknown to most of her treating doctors. [Recently described following the case of four young women who had developed prominent psychiatric symptoms and encephalitis. All had tumors called teratomas in their ovaries; teratomas (tumors, especially of the gonads, characteristically formed of numerous distinct tissues and believed usually to arise from germ cells or their precursors – OED) that were lacking in Cahalan’s case.]
- The quite feasible danger [on the medical team’s side] of fixing the history according the hypothesis based on symptoms and appearance (assessment) – Skeff.
Now, just imagine that Ms. Cahalan belonged to a limited English speaking family, and in need of an interpreter. As an interpreter, you are facing a situation involving a very sick young patient with a grim prognosis, and lacking a diagnosis. What are the challenges we might face as interpreters?
In a case like that, we are allegedly interacting more with family members than with the patient herself. A family with a very sick member without a proper diagnosis, and therefore, appropriate treatment, is prone to be extremely distressed. And although in every consent form they may sign it is reiterated that medicine is not an exact science, and promises or guarantees cannot be made, the concept is very unpalatable, ostensibly unable be digest.
As interpreters, we also have to keep in mind, as Cahalan conveniently reminds us using the example of her own progenitors that not everybody reacts the same way in front of adversity. Her father, to move forward, had to leave the past behind, while her mother was in denial, she rewrote the narrative of her daughter’s disease.
Hanging in there is the fear of not asking the right question; thus, upsetting the provider and, consequently, not receiving the best care – Skeff. A fear that is usually, as you may have noticed, is more exacerbated among people who do not speak fluent enough English and are prone to feel discriminated, even without apparent reason and unbeknownst to the provider.
If on top of that the patient is getting tired of visiting providers, as it happened to Cahalan: (…) they seemed to be silently encouraging one another to “check out that crazy girl” … the situation can become almost unbearable. It is a feeling that may easily be experienced, and virtually unavoidable, in teaching hospitals such as those of the University of Michigan of Health System.
Be this an attempt, not to provide you with any answers to the abovementioned episodes, but a humble go to encourage discussion among fellow interpreters, especially amid those ones interpreting for the same language and associated cultural background.
- Cahalan, Susannah 2012. Brain on Fire: My Month of Madness. Free Press, New York. xii, 268 pp
- Kelley M. Skeff, 2016. Reassessing the Patient’s History [University of Michigan Internal Medicine Grand Rounds]
- Oliver, Vicky. Puzzled monkeys: (http://vickioliver.blogspot.com/2012/04/puzzled.html – retrieved 10/05/2016)
- Oxford English Dictionary Online (oed.com)
- Rhys, Keith. Missed target: (http://keithrhys.com/ – retrieved 10/10/2016)