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List Making, Neurotic Behavior? La Maladie du Petit Papier

Monday, December 15, 2014 // Uncategorized

This is a perspective from last weeks The New England Journal of Medicine that was pointed out to my by a former 4th year medical student, James Saca, AMD (almost a doctor).  It was prompted by my quoting the 1985 article(my how time flies!) mentioned below.  It deals with the issue of whether list making by patients is a form of neurotic behavior.  Thank you James!

Perspective

The Disease of the Little Paper

Suzanne Koven, M.D.

N Engl J Med 2014; 371:2251-2253December 11, 2014DOI: 10.1056/NEJMp1411685

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Toward the end of his life, my father tried to engage me in conversations about our shared profession. He presided over these sessions from an armchair, his legs tucked under a blanket against the air-conditioned Florida chill to which he’d retired.

“Seen any great cases?” he’d ask. This question set my teeth on edge. Our relationship hadn’t been easy when I was young, and even well into middle age as I was then, it didn’t take much to fan the embers of my adolescent anger.

I’d explain — again — that I was a general internist, not a specialist as he had been, and derived my professional satisfaction from long and close relationships with patients and not from making obscure diagnoses.

He would give me a pitying look and shrug. Then he’d tell me some anecdote in which I heard him imply that he was more resourceful, wiser, and more devoted to and beloved by his patients than I could ever hope to be. About how, during the war, he recycled penicillin from patients’ urine and injected it into other patients. About how, during a housekeepers’ strike, he mopped floors and folded sheets and towels in the laundry room of the hospital where he was chief of staff.

The reminiscence I bristled at most, though, was about ladies — always they were “ladies” — with something he called la maladie du petit papier: the disease of the little paper. They would come to his office and withdraw from their purses tiny pieces of paper that unfolded into large sheets on which they’d written long lists of medical complaints.

“You know what I did then?” Dad asked. I did, but I let him tell me again anyway. “I’d listen to each symptom carefully, and say `yes’ or `I see’ — that’s all. And when a lady finally reached the end of her list, she would say, `Oh doctor, I feel so much better!’ The point is, all those ladies needed was someone to listen.”

After my father died, I researched some of the things he’d mentioned to me. Data collection was crucial to my mourning process. I longed for evidence of my father other than my own memory of him. I wanted — irrationally, I know — written proof that he’d existed.

An article in Time magazine, dated September 11, 1944, reported a novel extraction method whereby 30% of the penicillin injected into one patient could be reclaimed from the urine and injected into another patient. Doctors at a military hospital on Staten Island, facing a shortage of the wonder drug, were using this technique in enlisted men with gonorrhea.

An American history website featured an interview with a labor activist who had organized low-paid hospital workers to strike in New York City in the 1970s.

I found la maladie du petit papier, too. It’s defined, in an online medical dictionary (http://medical-dictionary.thefreedictionary.com/La+Maladie+du+Petit+Papier), as a condition in which “an exhaustive list of purported ailments — [is] carried around by a neurotic patient, often accompanied by extensive documentation of each bowel movement or sip of water.” The term, probably coined in the clinic of Jean-Martin Charcot at the Salpêtrière in the late 19th century, has never been complimentary. In an anti-Semitic treatise, one disciple of Charcot described a Jewish list-maker with scorn. He wrote, “In a voluminous batch of filthy scraps of papers that never leaves him, he shows us prescriptions from all the universities of Europe and signed by the most illustrious names.”1 Sir William Osler was more restrained but no less dismissive. He observed, “A patient with a written list of symptoms — neurasthenia.”2 In recent years, one doctor updated the diagnosis to “la maladie du grand print out,” a nod to the indispensability of the Internet to the modern hypochondriac.3

In a 1985 Journal article, primary care internist John F. Burnum challenged the notion that the disease of the little paper is a disease at all. He reported the results of an informal study he conducted in his own practice. Of 900 patients he saw in a 4-month period, 72 (8%) brought in lists of concerns. Burnum observed no higher incidence of mental illness and no lower incidence of physical illness in his list-making patients than in the non–list-makers. He concluded that patients who make lists aren’t neurotic, but simply “seeking clarity, order, information, and control.”4

Of course I was familiar, from my own practice, with the phenomenon of patients making lists, but I’d never known it had a name. I confess that these lists sometimes irritate me, as they do many doctors. Especially irksome is the sight of my last name without my title, scrawled at the top of a list — evidence that to my patient I am often merely another stop in a series of tedious errands guided by similar lists headed “GROCERIES” or “TO DO.” I steal an upside-down glance, in hopes that the list will be short, or at least that we’ll have covered most of the items by the time the little piece of paper makes its appearance. Each checkmark floods me with relief: “Prescriptions, you filled them. . . that mole on my thigh, you looked at it . . . we talked about that weird dizzy thing . . . .”

Why should these little pieces of paper bother me? I know that often patients, sensibly, bring lists to make the most of hard-to-schedule and ever-shorter visits with their doctors — indeed, in recent years they’ve been encouraged to do so. I’m aware of the studies that show the mere act of jotting symptoms down can ameliorate them. As a writer, I surely understand the urge to put pen to paper.

I wonder if I resent these lists because they threaten me. The “control” that Burnum thought patients reasonably sought is wrested, in part, from the doctor. When a patient pulls out that little piece of paper, I feel a shift in the exam room: the patient taking charge of the agenda, my schedule running late, the reins of the visit loosening in my hands.

I’m ashamed of my resentment, which is as unjustified as it is unbecoming. I know these lists aren’t really threats to me. They’re not about me at all. They are, like all writing, forms of self-expression. I remember the mathematician who handed me spreadsheets of his blood pressures with the mean and standard deviation calculated; the flamboyantly dressed woman who favored hot pink clothing and penned her lists in ink to match; the savvy businessman, many years ago, who clicked through his list on an early mobile device.

It turns out that my father was right: often, even when I have no explanation for the headache, upset stomach, or itch documented on the back of an envelope or punched into a smartphone, a patient feels better just having presented me with his or her recording of it. Perhaps naming our demons and saying their names aloud helps make them less frightening. Perhaps the shorthand of the list somehow abbreviates the anxiety associated with its entries.

Or maybe lists bring still deeper comfort. Concerns set in ink are made concrete, less likely to be ignored. Those little pieces of paper are declarations: I’m human, and my suffering is real. Writer Susan Sontag, a self-described compulsive list-maker, might have agreed. She once wrote that in writing lists, “I confer value, I create value, I even create — or guarantee — existence.”5

Strange that writing this, 10 years after my father’s death, makes me miss him more, yet also lessens the pain of missing him. Sometimes a lady really does just need someone to listen.

Disclosure forms provided by the author are available with the full text of this article at NEJM.org.

Source Information

From Massachusetts General Hospital and Harvard Medical School — both in Boston.

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