Friday, May 30, 2014

When Cancer Isn't Just a Word: Translating Medicine's Native Language

In referencing why he didn't make it in medical school, the author Michael Crichton wrote in his autobiography, "It's not easy to cut through a human head with a hacksaw." As a budding writer studying medicine, Crichton surely understood that the halls of Hippocrates are no place to mince words.



In truth, a medical education is a language immersion program. I'm learning to say venereal instead of sexually transmitted, papules instead of pimples, and neoplasm instead of cancer. Each word has a specific definition in medicine, and together these words constitute a new language through which to speak to clinicians clearly and professionally.



Part of medical training also involves patient encounters -- both in hospital wards and with standardized patients (people trained to act the role of a patient). I often catch myself allowing new terminology from the classroom to sneak into these interactions, creating confusion. Last week, a standardized patient presented with a chief complaint of a productive cough (my translation). I asked him how long he had been coughing up discharge, and he asked, "What do you mean discharge?" I clarified: "I apologize for the confusion. What I mean is, how long have you been seeing colored stuff come up when you cough?" That he understood.



The goal of medicine is to treat patients, most of whom don't speak the same medical language we learn in our lectures and textbooks. Patient care involves translation: translating the patient's words into medical language, communicating with health care workers and taking action on behalf of the patient, and then translating the medical findings back to the patient. Being an accurate translator is a science and an art requiring up-to-date information about diseases, patient preferences (how much they want to know), and patient knowledge (how much they understand). The standard approach to translation involves assuming patients don't want or need to know more than the minimum, and that patients understand enough to follow the prescribed course of treatment. Doctors discuss patient findings most extensively outside patient rooms, and often decide not to share the meaning of the findings in their entirety -- to protect and help the patient, or to protect and help the doctor. What they do share is just enough to let patients know they are being cared for.



The Battlefield of Clinical Practice



But what happens when these lines are blurred? When the doctor loves the patient, would give up his own life for the patient to survive the prescribed condition? In this New York Magazine article, oncologist Peter Bach examines his wife Ruth's cancer diagnosis and death. He describes how physicians respond to suffering with medical language and avoidance of honest conversations. For him, the hospital is the place "where [he] use[s] technical words that break down human suffering into its component parts." When Ruth is nearing the end of her life, both Bach and her doctor hide her prognosis. Bach writes:



"I knew that the doctors would head back into the hallway en masse, and out there they would really talk, the susurrus of their conversations drifting back into our room. They would say what I would: that treatment options were exhausted. That chemotherapy was no longer working, or, in doctor parlance, that Ruth had 'failed' chemo."





In his account, as is often the case in the linguistics of medicine, we never know what Ruth wanted to know.



What's in a word is more than just language -- there's assignment of culpability, patient personhood, a world of feeling that is often, and for critical reason, removed from the linguistics of medical speak. In "What's in a Word: The distancing function of language in medicine" (Journal of Medical Humanities, 1992), Psychiatrist Dr. David Mintz analyzes how medical language distances doctors from patients and shifts culpability. He writes about the different ways medical professionals could state chemotherapy is no longer working:



"We [as doctors] find it easier to say 'she failed on chemotherapy' than to say 'chemotherapy failed her.' This shifting of blame has the unconscious effect both of relegating our own inadequacies to the shadows and of making the patient seem less deserving of our solicitude and sorrow."





In traditional medical facilities, patients are described as cases and their diseases are treated as discrete problems to be fixed, rather than as the results of a complex interplay between biology, psychology, and sociology. With this distance from patients, doctors then have license to perform invasive and harsh procedures in the name of solving the health problem, rather than considering the most humane path in the particular patient's interest.



This creates a medical world similar to a war zone, with a corresponding vocabulary. Dr. Mintz describes these similarities in speech:



"A pathogen invades the body, penetrating its defenses. The doctor orders some scans and then antibiotics to be given to fight the infection ... The patient is considered to be passive; he or she is simply the battleground between the doctor and the disease... [This] produces a one-sided, authoritarian relationship between doctor and patient. The doctor becomes a general, issuing orders. The patient obeys. This metaphor also encourages a very active treatment, which may be proper in many cases, but should not be automatic. Technologies and treatments are weapons. In medicine, as in war, the biggest weapon becomes the best weapon, and more is better."





This description fits well with my experience in hospitals where I see patients defer to doctors during decision-making and passively await their fate to be decided; they give up their autonomy and sense of self in an attempt to be healed. Yet recent research has called this approach into question, demonstrating patients prefer to have accurate and more detailed information about their health -- and that having this information may improve health outcomes.



A Solution to the Doctor-Patient Linguistic Divide



One initiative dedicated to including patients as active participants in their health care is OpenNotes, a national initiative giving patients access to their visit notes. Patients can then comment on the notes and share them with family members, friends, and other clinicians. Research shows that with time, having open notes tends to prompt an evolution in medical practice that involves accepting feedback from patients and colleagues, and having further discussions with patients. These findings were described in the New England Journal of Medicine, along with the authors' vision for medical notes co-authored by physicians, patients, and their families. In "The Road Toward Fully Transparent Medical Records," Drs. Darer, Delbanco, Elmore and Ms. Walker write:



"Large majorities [of patients] reported having better recall and understanding of their care plans and feeling more in control of their health care. Moreover, two thirds of patients who were taking medications reported improved adherence. Doctors reported little effect on their work lives and were surprised by how few patients appeared troubled by what they read. Although the notes were not formally evaluated, the majority of doctors reported not modifying their tone or content."





The Choosing Wisely campaign similarly draws attention to the importance of well-informed clinical decision-making and gives patients access to information about the efficacy of different procedures and treatments. Medical specialists identify tests and procedures of questionable necessity and their responses are published and disseminated -- both in the medical community and to patients, sparking conversation between medical professionals and between patients and doctors about what treatment is appropriate and needed.



Currently, when doctors go on rounds they spend most of their time in discussion just outside the patient room. Educating one another about the physiology of the disease and treatment options happens within feet of the patient, but out of earshot, for the benefit of residents and interns but not patients and their families. If medicinal care continues along the path of OpenNotes and Choosing Wisely, we will soon have white boards in every patient room and rounds conducted at patient bedsides, with patient participation and a common language of collaboration.



While this collaboration may not necessarily save lives, it will create stronger, and more individualized treatment paths, preventing the "hacksaw" from entering the ER or the doctor's vocabulary. As the Hippocratic oath to which medical professionals swear states: "I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone."



Language, I've learned in my nascent medical studies, can not only harm, but also heal.



Additional Reading:






By Hippo Reads contributor Laura Christianson. Christianson is a University of Chicago Pritzker School of Medicine student whose research interests include waste reduction in the OR and free clinic value assessment. She graduated cum laude from Williams College where she majored in English Literature.



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