Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: TUESDAY, August 10, 1993 TAG: 9308100139
SECTION: EXTRA PAGE: 6 EDITION: METRO
SOURCE: Victor Cohn By The Washington Post
DATELINE: LENGTH: Long
Last month, Lewis decided to get out on a basketball floor and died.
Disagreements like this are not unusual in medicine. Patients often say, "One doctor told me this, another told me that. Why don't they know what they're doing? Why can't they get together?"
As Jerome Kassirer, the doctor who edits the New England Journal of Medicine, said in a July 1 editorial: "Although physicians are accustomed to two or more doctors having different opinions . . . the public often has great difficulty making sense of them."
We certainly do.
Kassirer's editorial was inspired by Lewis's April collapse, when a set of doctors diagnosed cardiomyopathy, a serious disease of the heart muscle, but other doctors believed it to be a far less serious fainting spell: neurocardiogenic syncope.
Lewis may not have decided whether or not to play pro ball again, but he obviously wanted to believe the more optimistic diagnosis. The medical argument went on for days, however, prompting a writer for Time magazine to say, "Never since Edgar Allan Poe has there been a telltale heart that produced more drama and mystery."
The drama ended, and then public questioning began.
What we the public often fail to understand is that doctors constantly navigate through a sea of mystery. Patients tend to think ailments fall into neat categories, obvious to any sharp diagnostician. It's not true. A diagnosis is often not "a single ironclad entity" - Kassirer's words - but rather a group of possibilities and "a moving target" to be modified by any new information.
Even the most sophisticated medical tests yield some "false positives" and "false negatives" or conflict, one with the other.
In some cases, uncertainty forever remains. After all possible tests, after a carefully chosen treatment, even after an autopsy to find the real cause of a trouble, doctors often continue to ask, "What was wrong? Did we do the right things?" and they aren't sure of the answers, not for lack of expertise but for lack of firm knowledge.
For lack of good studies, doctors often simply don't know if one treatment is better than another, or better than none. This means there is no "accepted" treatment for many conditions. One doctor may advise heart surgery; another will say, "We can help you with drugs." One says, "Stay off that ankle;" another, "Start walking."
An editorial in the Mayo Clinic Proceedings said: "When patients with acute chest pain are assessed in the emergency department, even the most experienced physicians become reacquainted with that sense of uncertainty that they first encountered as medical students . . . Determining which patients should be admitted to the hospital . . . is difficult because no single piece of clinical data . . . can be relied on to diagnose or exclude" heart attack.
There is no treatment that always works. Another Mayo editorial said: "Unexpected adversity" - in other words, a bad result - "will remain the natural consequence of uncertainty . . . Our major responsibility is to set tolerance limits for harm and to ensure that patients are informed participants in clinical decision making."
Glen Geelhoed, a George Washington University surgeon, has stated, "The surgeon is not the primary decision-maker but serves in the role of patient-educator . . . The patient is the one in control, since the decision affects the patient most directly."
How can we, the bewildered patients, deal with medical uncertainty?
n Ask questions. Ask doctors, "How sure are you of this? Are there other possibilities, other choices? What are their possible benefits or dangers? What do you think I should do?"
n Talk to more than one doctor and try to decide, Which should I trust? Which makes more sense? Or ask them to talk to each other, and see if they can agree on a decision or recommendation. Talk, if you can, to nurses or other knowledgeable health workers. Talk to friends or others who have had some similar condition to learn what they did, and how it worked out.
n Read. Almost every library has several medical reference works and books about many conditions. Almost every disease has its own society and publications. (For some National Institutes of Health publications, phone 301-496-2537 or 496-1768 between 9 a.m. and 3 p.m. Mondays to Fridays.)
n Think. Sometimes, there is no "right course" for everyone. Try to decide: What's important to me? Can I live with what I've got, or do I want to take a chance on a treatment that sometimes works, occasionally doesn't and just might do some harm?
And sometimes we must ask ourselves: Do I really have any choice? Must I go ahead if I want a chance at continued life or better health?
by CNB