A collection of postings on a range of issues is available on our website (www.mjacksongroup.ca). This month’s post is again from Ken Pope’s listserv, where he kindly provides daily summaries of current articles in the field. His post is as follows:
JAMA: Neurology includes an article: ““It’s All in Your Head”—Medicine’s Silent Epidemic.”
The author is Matthew J. Burke, MD, FRCPC, of the Division of Cognitive Neurology, Department of Neurology, Harvard Medical School, & Department of Psychiatry, Hurvitz Brain Sciences Program, University of Toronto.
Here are some excerpts:
It’s all in your head” is a phrase sometimes said by physicians to patients presenting with symptoms unexplained by medical disease.
As a neurologist specializing in neuropsychiatry, nothing bothers me more than overhearing medical colleagues proclaim this one-liner at the bedside or snicker about these patients during rounds.
Unbeknownst to them, I also hear my patients’ version of being on the other end of this phrase and find myself constantly trying to repair the damage that these words can cause. Whether physicians like to admit it or not, medically unexplained symptoms encompass a vast terrain of clinical practice. In neurology, these symptoms fall under functional neurological disorder, but every specialty has their own variants and favored terminologies (eg, chronic fatigue syndrome, fibromyalgia).
The inadequate management of this segment of medicine represents a silent epidemic that is slowly eroding patient-physician relationships, perpetuating unnecessary disability, and straining health care resources.
The irony of “it’s all in your head” is that although this phrase is often used inappropriately and dismissively, it is technically correct. The problem does indeed lie within the head. More specifically, it lies within the brain and its complex networks that we are just beginning to understand. Over the past 10 years, neuroimaging research studies have consistently identified brain abnormalities in patients with medically unexplained symptoms—yes, biologically based changes in the activity and connections of brain regions, such as the amygdala, prefrontal cortex, temporal-parietal junction, and other structures.1
These brain circuit abnormalities provide physiological explanations for once mysterious links between regions implicated in emotional processing and the generation of “physical” symptoms (eg, pain, fatigue, weakness). Jean-Martin Charcot, MD, a famous 19th century French neurologist and early pioneer of this field, reportedly insisted that a “functional lesion” would be found when microscopes were sufficiently powerful.2 Well, our microscopes are getting better, and we are now starting to see evidence of the predicted functional or software disruptions in the brain. We still do not fully understand what causes these software problems; however, recent research suggests a multifactorial etiology, including genetic predisposition, environmental risk factors (eg, childhood adverse events), and psychological stressors.3
Despite the growing scientific literature, there has been minimal shift in physician attitudes toward these patients. Physicians seem quite comfortable with the idea of structural brain lesions causing psychological symptoms, such as a frontal lobe stroke causing depression or a temporal lobe tumor causing delusions. However, the reverse causality of psychological factors (borne of the same substrates—neurotransmitters, neurons, and synaptic connections) leading to neurological or systemic symptoms is often hastily dismissed and remains highly stigmatized. Thus, many physicians either simply ignore these kinds of symptoms or wrongfully assume that patients are malingering.
Based on such attitudes, a typical physician-patient interaction may proceed as follows: (1) the physician provides a rundown of normal investigations, (2) the patient is told they have no known medical diagnoses, (3) a brief awkward exchange occurs, and (4) little further explanation, guidance, resources, or facilitation of an appropriate referral process is given. Even if the infamous phrase is not explicitly stated, this sequence leaves the patient to infer for themselves that it must be all in their head.
Unfortunately, they do not perceive this as, “I have a real dysfunction of networks in my brain,” but instead understandably conclude that, “they think I’m crazy” or “faking it.”4 Sometimes, patients may hear the distant utterance of, “Maybe you should see a psychiatrist,” as they exit the office door, but in this context, such advice is rarely productive.
Many of these patients can be so offended by this encounter that they quickly seek multiple second opinions and subsequent rounds of pricey and unnecessary investigations. Depending on the jurisdiction and medical record system, the original physician may be completely unaware of these additional rounds of care. Mounting negative and invalidating clinical interactions can become a source of distress and cause medical trauma. At this point, patients often either fall through the cracks or stumble on a fringe medical specialist or alternative medicine practitioner who may offer the “physical” diagnosis they’ve been yearning for. This could include a growing list of unsubstantiated metabolic deficiencies, infectious disorders, or autoimmune hypersensitivities. Anecdotally, the most common current example seems to be the diagnosis of chronic Lyme disease by unvalidated assays.5 Let me be clear that many of these practitioners are well intentioned and can offer holistic approaches that medicine could learn a lot from. However, there appears to be a subset that take advantage of these patients’ desire for a “physical” diagnosis and exploit their vulnerabilities.
For the patient, receiving such a concrete, “organic” diagnosis often quells mounting anxiety, which in itself could be partially therapeutic. However, now wedded to their given diagnosis with no knowledge of their actual software problem, patients do not see a need to address underlying factors that may be contributing to their disorder nor do they receive the multidisciplinary care that they may so badly need.
The saddest part of this epidemic is that if addressed early, these symptoms may be reversible; however, with delays to proper diagnosis and management, prognosis worsens considerably.6
I see firsthand the high patient volumes and health care resource utilization that currently escape record keeping. I raise these concerns to my colleagues, who wholeheartedly agree, but the conversation ends there and the silence continues. I am hopeful that new research technologies, such as natural language processing, could identify these patients in medical records despite the lack of adequate billing code data and that improved records systems will better track these patients through different health care pathways.
To address the epidemic itself, we desperately need more clinicians and researchers dedicated to interrogating the complex interfaces of mind, brain, and health. Currently, there are small pockets in different specialties, but these are not nearly commensurate with the volume and impact of these disorders.
Second, and arguably more importantly, we need to fundamentally change the culture within the medical community to eliminate the negative connotations associated with these disorders. This change requires buy-in from hospital and health care leadership and a supportive infrastructure.
These patients have complex conditions and require additional upfront consultation time, resources, and collaborative care. To prevent the cycles described previously, physicians need to be incentivized to take the time necessary to optimize the initial patient encounter.
This includes delivering and explaining the diagnosis in a transparent and supportive context,9 providing patient-friendly resources (eg, https://www.neurosymptoms.org/), and referring appropriately for interdisciplinary management (eg, physical therapy, occupational therapy, psychotherapy). New educational and training initiatives across medical and allied health professions will be critical for enabling a successful transition.
Here’s a link: Ken Pope: Medicine’s Silent Epidemic
Pope & Vasquez:
“For all those that have to fight for the respect that everyone else is given without question.”
―Nora K. Jemisin, Psychologist & Science-Fiction Author; 1st African-American to Win a Hugo Award for Best Novel