The patient’s visit to his physician feels incomplete without an answer to that question. What is the name of the ailment that is causing me to feel this way? Do my symptoms add up to something that can be recognized with a single label? Once I have a diagnosis, what comes next? This issue of Virtual Mentor looks at how the answer to “What is it?” can affect the course of someone’s life.
To lead you to an overwhelming question….
Oh, do not ask, “What is it?”
Let us go and make our visit .
The narrator of T.S. Eliot’s The Love Song of J. Alfred Prufrock is imprisoned by others’ perceptions of him to the point that they constrain his relationships and behavior. His self-image becomes a mirror of his presumed public image, and he struggles with what he dares and dares not do. Such is the power of a few choice glances or words to shape a person’s interactions, self-concept, and future.
After the patient makes his “visit,” the physician talks, tests, and ultimately fits the pieces into a diagnosis. This label can act as validation that a patient’s condition is “real” and consistent with what other sufferers have. It can serve as a “gatekeeper,” allowing patients access to particular medical treatments, programs, or financial compensation. As explained by Valarie Blake, JD, MA, in the health law section, diagnoses of cystic fibrosis or personality disorder qualify individuals for disability insurance. Similarly, a diagnosis of autism can mean that a child is able to benefit from early intervention and special resources from his or her school. In her case commentary, Mary Lynn Dell, MD, DMin, explores the pressures placed on a physician by a parent who wants her son to be able to access those early interventions. The case, borderline Asperger disorder in a child, is far from clear-cut, but only a black-and-white diagnosis will let the child reap the benefits his school would offer.
And I have known the eyes already, known them all—
The eyes that fix you in a formulated phrase,
And when I am formulated, sprawling on a pin,
When I am pinned and wriggling on the wall,
Then how should I begin
To spit out all the butt-ends of my days and ways?
But labels come with downsides. A diagnosis can change how others view a patient and how the patient views himself. Diagnoses are not context-free, and a patient’s individuality may be overshadowed by the medical name he or she is given. Once labeled, a person’s innermost physical and mental workings become medicalized. Stigma, by self or others, is not uncommon. In her case commentary, Cynthia Geppert, MD, PhD, discusses the profound power of language, especially in diagnoses that can be harmful to the patient, and how nuances in a physician’s explanation can affect a patient’s psyche and self-image. How best to tailor our words, based on a holistic evaluation of a patient’s needs and disposition?
Is a diagnosis of a devastating disease that has no treatment worth giving at all? We are coming closer to finding possible biomarkers to aid in early detection of Alzheimer disease. Future physicians may face the dilemma of whether the pros of providing such information outweigh the cons. Matthew E. Growdon reviews an article highlighting these challenges, which are further complicated by the fact that the disease in question eventually obliterates a person’s identity.
On a grander scale, creating an entirely new set of disorders based on what used to be considered normal variation is not without consequence. Many of our authors touch upon the societal, economic, and political implications of increasing medicalization and treatment. How is the way we view disease changing, and does that change the face of particular diseases?
The result of medicalization is a double-edged sword. In the history of medicine section, David E. Smith, MD, explains how the evolution of addiction medicine as a disease specialty altered public opinion and treatment of substance abuse issues. George L. Blackburn, MD, PhD, discusses in his policy forum piece how medicalizing obesity may improve the public image of those who are obese and lead to more aggressive interventions. Elizabeth A. Kitsis, MD, MBE, explains in her op-ed that pharmaceutical involvement in the formation of diagnoses may increase awareness of a disease but may also mislead people into thinking that how they behave isn’t “normal” and can or should be “fixed.” Matt Lamkin, JD, MA, predicts in the medicine and society section that the ever-expanding number of diagnoses that portray human behavior as genetically determined will eventually cease to entitle the diagnosed to special accommodation.
In a minute there is time
For decisions and revisions which a minute will reverse.
Nothing in medicine is set in stone, which may make some diagnoses arbitrary at best and misguided at worst. Diagnostic categories are not objective reflections of the world, Barry DeCoster, PhD, argues in his article. He discusses the dangers of underappreciation of how diagnoses are created and overconfidence in their certainty. And diagnostic categories are indeed shifting. Emily A. Kuhl, PhD, David J. Kupfer, MD, and Darrel A. Regier, MD, MPH, review some of the proposed changes to the Diagnostic and Statistical Manual of Mental Disorders, as well as their rationales and possible repercussions.
And should I then presume?
And how should I begin?
The narrator’s fear of being misinterpreted is omnipresent in Eliot’s poem. He imagines himself baring all in a hypothetical scenario, and, despite his best intentions, he sees his words taken the wrong way. Such a fear is perhaps founded: self-disclosure may forever alter the nature of a relationship. Sometimes a physician, in good faith, chooses to label herself to further establish closeness in the patient-doctor relationship. James E. Sabin, MD, discusses the appropriateness of physician self-disclosure in his clinical case. What changes once the doctor reveals a personal issue to a patient struggling with a similar problem? Perhaps counterintuitively, many patients report feeling less satisfied and less reassured when their doctor shares such information. How to toe the fine line between advising based on personal experience and oversharing?
Ultimately, Eliot’s character never asks or answers his “overwhelming question.” Physicians have no such luxury. An uncertain constellation of symptoms in a patient warrants an explanation if both parties are to be satisfied. From question to answer, however, is a winding path. Which questions should a physician ask to obtain a diagnosis? Which assumptions should she make when seeking one? How should she explain the diagnosis in a way that empowers the patient? How much should she share?
How should we begin?
Eliot TS. The love song of J. Alfred Prufrock. In: The Waste Land and Other Poems. Peterborough, ON: Broadview Press; 2010.