Putting a Name to It: Diagnosis in Contemporary Society

Introduction: What's in a Name?

Introduction What’s in a Name? “Has anyone mentioned Huntington’s disease to you?” . . . Baxter is looking at the ground. Perowne takes his silence as confirmation. “Do you want to tell me who your doctor is?” “Why would I do that?” “We could get you referred to a colleague of mine. He’s good. He could make things easier for you.” At this, Baxter turns and angles his head in his attempt to settle the taller man’s image on his fovea, that small depression on the retina where vision is most acute. There’s nothing anyone can do about a damaged saccadic system. And, generally, there’s nothing on offer at all for this condition , beyond managing the descent. But Henry sees now in Baxter’s agitated features a sudden avidity, a hunger for information, or hope. Or simply a need to talk. “What sort of thing?” “Exercises. Certain drugs.” “Exercise . . .” He snorts on the word. He is right to pick up on the fatuity , the feebleness of the idea. Perowne presses on. “What has your doctor told you?” IAN MCEWAN (2004) The power of the diagnosis is remarkable. Receiving a diagnosis is like being handed a road map in the middle of a forest. It shows the way—but not necessarily the way out. It indicates what the path ahead is going to look like, where it will lead, the difficulty of the climb, and various potential turnoffs along the way. Perhaps it identifies the destination, but not necessarily. With a diagnosis, things don’t necessarily get better, but they become clearer. The unexplained becomes explained, and management is defined. Assumptions are made about the future. The diagnostic moment is simultaneously transformative and contingent. 2 Putting a Name to It Its transformative power is captured in the extract at the beginning of this chapter. In McEwan’s story, Perowne, a neurosurgeon, makes a sidewalk diagnosis of Huntingon disease in a thug who has started beating him up. His involuntary, uncoordinated, and jerky movements are a dead giveaway. When Perowne names the disorder, his attacker is completely disarmed; the fact of his diagnosis (albeit one he already knew) refocuses the present. Suzanne Fleischmann (1999), in her poignant linguistic discussion of her own (ultimately fatal) disease, explains that “the verbal act of presenting a patient with a diagnosis is never a simple act of conveying value-neutral biomedical information. It is an act fraught with symbolism. If a person is told ‘you have cancer’ (or any life-threatening disease) these words irrevocably alter that person’s consciousness, view of the future, relationships with family and friends, and so on. Moreover, the utterance marks a boundary. It serves to divide a life into ‘before’ and ‘after,’ and this division is henceforth superimposed onto every rewrite of the individual’s life story” (p. 10). Even in less dramatic circumstances, diagnosis frames reality in significant ways. Few readers of these pages would not have one day thought, “What would I do if I found I had X?” imagining how life would look if, out of the blue, a serious diagnosis interrupted the quotidian. “Would I even want to know?” I remember the great ethical debates around la verité au malade (telling the truth to patients) when I was a young nursing student in 1980s France. Did health professionals have the right to throw people’s lives into disarray by sharing devastating diagnoses with them? Sometimes it was better not to, we were told. I worked at the Clinique Catherine de Sienne—an oncology clinic—where nursing staff were not allowed to pronounce the word cancer within earshot of patients. Its effect would be too emotionally devastating. We should leave such diagnoses in medical hands, out of respect for their transformative power.1 In contrast, when I nursed in medical oncology in the United States for several years, the truth was distributed liberally in its naked, harsh form. In a different culture, rights associated with diagnosis took a different form. With self-determination at the heart of the American dream, knowledge of one’s ailment provides the object against which to react, the starting point for self-realization. The contingency of diagnosis, on the other hand, is generally not as obvious as its transformative power. Diagnoses are presented as facts of nature, yet they hide a deeply grounded, socially negotiated genesis. As real and ob- Introduction 3 servable...