When Ethics Leans on Jargon Patients Often Denied Choices
MANAGED CARE July 1999. ©1999 MediMedia USA
The language of medicine is an art. Careful and elusive, Aristotelian and poetic, it takes years to learn, lasts forever, and is known only to the privileged. It is hard to mimic without giving away one's pretension, and it is hard to shed without giving away the farm.
Ordinary words have eluded practitioners, who have put them aside in favor of the language of defensive medicine and economic concerns. Bioethicists have made the same mistakes with ethics jargon, separating physicians from patients, instead of drawing them closer. Can these mistakes be corrected?
Some doctors I know deliberately use the following phrases to diminish the likelihood of suit:
"The patient denies chest pain" can imply that the patient was accused of having chest pain. Why else would he deny it? By implication, the patient might not be reliable or honest. "The patient reports" has no judgment attached to it.
"The treadmill came back positive for ischemia" can imply that ischemia is a happy event — positive is good — to which we look forward. "The treadmill shows reduced blood flow to the heart" is clearer, and not a bit misleading.
"The patient failed chemo and radiotherapy" makes the patient responsible for whether these treatments did what they were supposed to do. Someone who fails is likely to flunk, and a flunking student is expelled, which is not too far from expired. "Chemo and radiotherapy were unsuccessful" puts the responsibility for treatment success back where it belongs.
"The physical examination was unremarkable (or unimpressive)" makes it seem like a disappointment to the careful listener. Wouldn't you, not knowing what you do about medical language, rather be impressive and remarkable?
Physicians today are concerned about keeping their jobs and regaining their autonomy. No wonder. Nearly every doctor I know thinks that managed care is the worst thing that could have happened. Never mind that 1998 median net physician income is $164,000 — at least five times that of the average wage earner, and 20 percent higher than historic norms.
The American Medical News reports that a "combination of forces" has driven down doctors annual income for only the second time in the history of the AMA's Socioeconomic Monitoring System Survey.
Those forces include: "Increased overhead. Decreased reimbursement rates. An expanded physician-labor pool. Redistributed clinical work to less-expensive practitioners."
Physicians will get little sympathy from patients who fail tests or cannot decipher the language of an invoice.
Ethics is no better than either defensive medicine or the new economics. The language of millennial medical ethics has become nearly impenetrable armor, strangely protecting itself but not much else.
If medicine is conducted as a war on disease, then bioethics, according to John Fletcher, Ph.D., of the University of Virginia, is a disarmament movement. It's a disarmament movement without a prayer, because it takes a doctoral degree in the right subfield to understand what most bioethicists say.
Bioethics doesn't recognize, says Steve Miles, M.D., of the University of Minnesota, that the real issue is that "we can't hear such a patient — not that she can't speak." Bioethics could showcase the details of patient cases as ways of understanding the humility that medicine teaches.
The language of ethics makes the commonplace rare, and the rare seem common and incredibly important. Millions of overweight people, for example, are trying to take control of something that has controlled them, and that costs employers and managed care $70 billion annually.
Similarly, millions of patients are demented or need hospice care. There are few ethicists helping with obese or demented patients, or thinking or writing about either of these medical problems — one of public health, the other of private torture.
Conversely, fewer than 5,000 patients have persistent vegetative state. There are hundreds of papers on PVS, with dozens of conferences and books devoted to it over the past quarter century. Ethicists have made whole careers out of testifying in PVS cases, speaking about them, serving on commissions to dissect them, issuing reports that matter only to other ethicists.
Laymen left out
The language of medical ethics takes reasoning about right and wrong away from the layman. To get the real answer on your difficult case — baby on life support, medicine off formulary, provider out of network — ordinary people can't just talk it through with their family, or in their church, or with neighbors or friends. They have to go to a committee — an ethics committee. Or to an appeals mechanism. Or to another institution, sometimes not even in the same building or town in which their loved one lives.
Once in a while, a phrase gives new hope. The principle of "double effect" is, according to Kathryn Montgomery Hunter, Ph.D., "logic's concession to tragedy." When you give Narcan to a full-code patient whom you sedated too much while trying to relieve his pain, and with his new breath comes new terrible pain, you wonder — where is the ethics in this?
Perhaps we shouldn't be surprised that ethicists can be found on the front pages and testifying in Congress, but seldom are actually with patients or clinicians.
Ethicists have been — along with, and in part because of, our language — largely marginalized from the clinical setting. The languages of medicine and ethics serve medicine and ethics, but not patients.