Doctors and Disease
To the Editor:
As one who is afflicted with a progressive, degenerative disease, multiple sclerosis, I anxiously read Kevin G. Barnhurst’s “Living without Health” [April] as soon as the issue arrived. Mr. Barnhurst’s is a common tale of woe, especially for those whose diseases have yet to be given a name. MS is different only because its symptoms are better known, though its etiology and treatment still elude medical science.
I was disappointed with Mr. Barnhurst’s article, however, because it did not live up to its title. I expected to read about how people with chronic diseases, with their terrible pain and accompanying disability, cope with “life without health.” But Mr. Barnhurst never really speaks to the point, an inquiry considerably more interesting and informative than the trials and tribulations of dealing with cold-hearted, questionably-competent physicians. For all his frustration and anger, I could not help wondering whether Mr. Barnhurst would have been more satisfied if they had said, “We’re sorry, but we don’t know what you have. Furthermore, we don’t have the slightest idea what to do with it, so the best thing you can do is rest or pray or both.” Or would Mr. Barnhurst, like the rest of us, have wanted, nay demanded, that they do something, almost anything? Is that not the sort of demand we make of incomplete medical science and its imperfect practitioners? If it is, then Mr. Barnhurst’s anger is inexcusable: he should have realized that medical science is barely out of its infancy and physicians are pitifully human like the rest of us.
Mr. Barnhurst never explains what sustains him in the face of his disease, except to say, “Life is its own imperative.” Here he misses the distinctive character of his own experience. It is more than just life that Mr. Barnhurst has chosen; it is an independent, productive life. He could as easily have opted not to pursue marriage, family, education, and a professional career. That would have been a story worth telling. Instead, we get the tale of symptoms and afflictions which no more interest me than mine would him. We are harangued about the limitations of the medical profession, which are more than familiar to us all, when we should have been told how life can go on when our very existence is suddenly rendered tentative. We are told scarcely anything about the support, or lack of it, which Mr. Barnhurst drew from his religion, when the choice for or against faith is certainly one of the most important for those chronically ill.
What sustains Mr. Barnhurst’s marvelous and admirable ability to keep going remains a mystery to me. I would rather that he shared it with us all. Meanwhile, I would refer him to Anthony Trollope’s Small House at Allington, where Lord De Guest is trying to buoy a downtrodden Johnny: “You know the story of the boy who would not cry though the wolf was gnawing beneath his frock. Most of us have some wolf to gnaw us somewhere; but we are generally gnawed beneath our clothes, so that the world shall not suspect. The man who goes around declaring himself to be miserable will not only be miserable but contemptible as well.”
Stephen M. Baron
Syracuse, New York
To the Editor:
One cannot read Kevin G. Barnhurst’s “Living without Health” without appreciating his physical and emotional suffering as poignantly described in his moving prose. We were disappointed, however, to note Mr. Barnhurst’s consistently illogical attacks on physicians, attacks which throughout the article seem to be unsubstantiated generalizations, non sequiturs, irrelevant, etc. A few representative examples will illustrate the problem:
Mr. Barnhurst cites La Rochefoucauld, “We have all of us sufficient fortitude to bear the misfortune of others.” The obvious implication is that physicians who have not suffered cannot appreciate their patients’ suffering. He then lists innumerable transgressions of physicians which presumably have ensued from this lack of suffering, almost as if suffering constituted a rite of passage for becoming a humane and competent physician. A physician who has had personal involvement with disease may well be able to empathize with an ill patient; however, such personal experience is simply not necessary for the development of the proper attitude of detached concern on the part of the physician. Such an attitude implies neither paralyzing sympathy nor the callous indifference which Mr. Barnhurst imputes to the unsuffering physician.
He also argues that “Most doctors share a distorted, comic view of the human body,” as evidenced by their “jokes about intimate bodily processes. . . .” But virtually all people have humor . . . about their own profession—doctors, morticians, lawyers, insurance agents, even college professors like Mr. Barnhurst. This does not mean that they lack genuine concern. For most, such humor is a release necessitated perhaps by the very sensibilities Mr. Barnhurst doubts. Disease and suffering are not funny, and humor is rarely appropriate in the physician/patient relationship, but Mr. Barnhurst . . . surely would not want a doctor without a sense of humor.
He observes further that “I didn’t know that lupus was the latest fad diagnosis. . . . I didn’t know physicians followed fads.” The implication is that diagnoses are sociologically based, though Mr. Barnhurst offers not one word of evidence for this assumption. In fact, there may be some truth in this for all professions, even scientific ones (Thomas Kuhn’s The Structure of Scientific Revolutions makes this point). . . . But in this instance, we have only Mr Barnhurst’s unsubstantiated accusation.
Mr. Barnhurst reviles the doctors who care for him, taking their often ineffective or counterproductive treatment as evidence not only of their incompetence, but also of physicians’ general incompetence and arrogant disregard of the patient’s observations. Leaving aside the unwarranted generalizing from Mr. Barnhurst’s particular experiences, even in his own case he points out that “medical history has recorded only three hundred cases like mine.” Why then would he expect smooth diagnosis, therapy, and prognosis?
Many of Mr. Barnhurst’s points specifically regarding the quality of his care are also oversimplifications of complex issues or Catch-22 criticisms of physicians. For example, he criticizes the approach of the Health Maintenance Organization (HMO) to his illness. It is true that HMO’s are not designed to handle the most difficult cases efficiently, and he may have a point about the HMO’s natural tendency to provide cut-rate care by overloading him with “on-hand” therapy and avoiding expensive outside care. Here Mr. Barnhurst is simply expressing the public’s own ambivalent view of medical economics; that is, your medical care costs too much, but don’t hold back on tests or any medical procedures when I get sick. . . .
He says he wants the “ancient gesture of healing” rather than the specialist’s procedures. Would he also prefer the ancient results? Furthermore, he argues that “medical practitioners tend to play down or deny the pain they inflict on humans.” As a practical matter, of course, many diagnostic procedures are done under some type of sedation or analgesia; greater reduction of discomfort could be effected only at a considerable and unwarranted risk to the patient. . . . But would Mr. Barnhurst have physicians, in some perverse expression of intellectual honesty, emphasize the potential magnitude of discomfort prior to the procedure? Pain may be increased or decreased by suggestion alone.
Mr. Barnhurst’s complaints appear to reflect anger and frustration at the medical profession’s inability to eradicate disease totally or make its remedies completely palatable. This is hardly new. . . .
Mr. Barnhurst provided a moving account of courage in the face of terrible suffering and uncertainty. In view of such courage, it is disheartening that he needs to vent an unfair and illogical rage against the physicians who, with some clear exceptions, appear to be genuinely trying to help a patient with a rare disease, as well as a profession which, with all of its faults, deserves more than Mr. Barnhurst’s unsubstantiated attacks.
Richard E. Vatz
Towson State University
Kenneth A. Vatz, M.D.
To the Editor:
As a victim of hasty doctors and superficial diagnostic techniques, . . . I fully agree with Kevin G. Barnhurst that we don’t know much more about our bodies than “the terrain of our skins,” and even that we don’t know too well.
Had Mr. Barnhurst known that systemic lupus erythematosus is a disease that strikes women ten times more frequently than men, he might have sought out a different physician immediately and saved himself a lot of grief.
The best medicine for anyone is a basic knowledge of human physiology—and a healthy dose of skepticism.
New York City
To the Editor:
As a physician, I am intrigued by the technical aspects of Kevin G. Barnhurst’s illness. What is the diagnostic entity, how did the complication from aspirin arise, why the surprise at receiving oral cortisone therapy when oral cortisone derivatives have been available for years? But the technical matters, while inseparable from the problem as a whole, are overshadowed by Mr. Barnhurst’s predicament as a young man who has a chronic, debilitating disease with unusual symptoms and an unpredictable course. Such a disease doesn’t kill, it just makes the patient wish he were dead. This is not said to be facetious, but to emphasize that chronic disease, with its debility, pain, and lack of finality, either through definitive therapy or death, poses one of the most difficult problems that afflicted persons and their physicians can encounter. The reactions of Mr. Barnhurst to his illness and to the medical community are all too common, understandable, and not unreasonable. But his analysis breaks down when he implies that current medical technology necessarily separates physicians from their humane role.
It is argued that as medical technology has increased, there is less humanity and concern for the whole patient among physicians. Yet there is nothing humane about a charlatan or an incompetent physician who misses a diagnosis . . . or botches a procedure. The point of all the technological advances in medicine has been to promote better patient care and health. Conjointly, . . . entire new fields of medicine have evolved over the last twenty years. A certain amount of specialization among physicians is required so that expertise and quality of care are not compromised. The physician must keep abreast of new technology (drugs, procedures, etc.), but also meet the diagnostic demands of an ever increasing array of disease entities and clinical problems. . . .
However, the limits of scientific medicine need to be recognized. Obviously, there are many diseases for which no therapy exists. But in addition . . . the success of any established therapy canot be guaranteed. The appropriate antibiotic for an otherwise fatal infectious disease does not always prevent mortality. Finally, many people have symptoms which, simply, cannot be explained. Most often, these symptoms do not portend a serious illness.
But again, there is no guarantee. So a humane physician must be technically competent, recognize his limits, and, to complete the definition, he must care about his patients. Such a physician will accept the responsibility for the medical care of his patients whether delivered personally or by consultants. He will treat his patients with respect, address their fears, and educate them in the setting of scientific medicine. Are such physicians rare? I do not think so, but there is nothing newsworthy about them. Their patients rarely complain.
That such a physician was not found at a Health Maintenance Organization or at the Veterans’ Administration does not surprise me. Medical positions in these organizations tend to be filled by people who are attracted by a forty-hour work week, a fixed salary, and no interruptions during their off-hours. In this setting, the usual doctor-patient relationship has gone awry. The patient has little or no choice of physician and the reputation, stature, and income of the physicians in these organizations are not determined by patient preferences. So I am not surprised, but I am dismayed, that pain induced by procedures was minimized and reported symptoms were denigrated. I am also curious about the age of Mr. Barnhurst’s physicians. Apparently, the archaic, authoritarian mode of medical practice is not extinct.
What could a competent and caring physician do for Mr. Barnhurst? Unfortunately, nothing definitive. But he could help alleviate the pain.
Martin Caplan, M.D.
Kevin G. Barnhurst writes:
Notable in the letters from Stephen M. Baron and Richard and Kenneth Vatz are two points: first, with considerable venom, both letters accuse me of venting frustration, anger, and rage against the medical profession—Mr. Baron calls it “inexcusable,” the Vatzes call it “unfair and illogical”—and, second, both letters suggest that I am angry because I, in the Vatzes’ phrase, “expect smooth diagnosis, therapy, and prognosis” (Mr. Baron asks whether I “would have been more satisfied if they had said, ‘We’re sorry, but we don’t know what you have’”).
Because my essay was personal, rather than scientific or scholarly, I suppose I should have expected my critics to take a personal tack. And my response must be personal as well: I do not now feel, nor have I ever felt, anything approaching rage toward the medical profession. When I first became sick I was saddened and frightened, not angry. Since then I have become skeptical, the approach Ellen Leitner rightly proposes.
If there is anger in my essay, it is aimed at a society that blindly refuses to accept its limitations. If I had not been taught to expect health or prompt healing from doctors, I would not have “wanted, nay demanded, that they do something, almost anything,” as Mr. Baron suggests. My essay recounts how I learned what Mr. Baron says I “should have realized”: that medical science has its limits, that doctors have their limits, and that my life has its limits. The title, “Living without Health,” was meant to suggest that conclusion, not to introduce do-it-yourself hints.
To the charge that I have missed “the distinctive character” of my experience—that I “could as easily have opted not to pursue marriage, family, education, and a professional career”—I can say only that I have lived the one life I could, being myself and not Stephen Baron. My point was not that my experience was unique. I believe it is common, and I do not subscribe to the notion that the truth of our physical decline and mortality should be hidden behind the pretense of good health, as do Mr. Baron and the fictional De Guest.
In response to the other points made by the Vatzes, I offer the following. First, their inference from La Rochefoucauld that one must first suffer to appreciate suffering strikes me as silly, like saying one must first die to appreciate dying. Second, my point was not that physicians have humor but that their humor is demeaning. Third, I criticized the HMO because it pretended to do more than what it could reasonably do, not because I wanted my case to be above the sensible economic limitations of medicine. Fourth, my argument is that I was mistaken to expect the ancient gesture of healing—that we would all be better off to give up our mistaken expectations of physicians.
On this last point, Martin Caplan’s letter offers a much more subtle and reasonable analysis. Still I must disagree. His definition of the humane physician and his mention of “the usual doctor-patient relationship” are both references to the collection of beliefs I call the health ethic. Like the rest of society, physicians today may have been inculcated with this mistaken ethic, but the processes by which they are selected for and trained into the profession have almost no relation to humane values.
As Dr. Caplan argues, the “explosion of knowledge” has made specialization imperative. The advance of technology has also weakened the claim of a special humane role for medicine. If doctors are humane, it is because they are humans, not because they are doctors.
My experience is that, except in the debased meaning of the term, patients and doctors do not have a relationship. Madison Avenue and popular psychology may want me to have “a relationship” with my attorney, my broker, and my insurance agent, but although I depend on doctors constantly, the only one with whom I have a relationship happens to be a member of my family.