Anatomy of an Illness as Perceived by the Patient Page 9
Dr. Jerome D. Frank, of the Johns Hopkins University School of Medicine, told students at the university’s graduating exercises in 1975 that any treatment of an illness that does not also minister to the human spirit is grossly deficient. He cited a 1974 British study showing that the survival rate of patients with heart disease being treated in an intensive-care unit was no higher than the survival rate of similar patients being treated at home. His interpretation was that the emotional strain of being surrounded by emergency electronic gadgets in an atmosphere of crisis offsets any theoretical technological gain.
In that same commencement talk, Dr. Frank referred to a study of 176 cases of cancer that remitted without surgery, X-rays, or chemotherapy. The question raised by these episodes was whether a powerful factor in those remissions may have been the deep belief by the patients that they were going to recover and their equally deep conviction that their doctors also believed they were going to recover.
One of the most succinct statements I have read anywhere bearing on the need of the patient to have faith in the physician was written by Dr. Robert R. Rynearson in the Journal of Clinical Psychiatry, June 1978. “Illness,” wrote Dr. Rynearson, “particularly chronic illness, may force the sufferer into a dependent relationship with the person who offers to heal him. If trust does not become an important part of this relationship, it is unlikely that healing will occur. Physicians who ignore the importance of the relationship with the sufferer are often those who possess a simpleminded philosophy about illness—that is, that illness is the enemy which he assaults with all the skill and technology at his command. And, technology being what it is today, the sufferer may succumb to the treatment.
“Physicians need to be in actual touch with patients. Increasing technology in medicine is pushing the physician away from the patient. If the physician allows machinery to be interposed between him and the patient, he will be in danger of forfeiting powerful healing influences. A thorough physical examination fosters trust—there is a laying on of hands and a listening attitude. The sufferer is being touched and understood. The physician is then allowed to collaborate with the patient in altering the delicate balance between illness and health.
“Physicians must resist the idea that technology will some day abolish disease. As long as humans feel threatened and helpless, they will seek the sanctuary that illness provides. The distinguished scientist and humanitarian, Jacob Bronowski, cautioned us in this regard: ‘We have to cure ourselves of the itch for absolute knowledge and power. We have to close the distance between the push-button order and the human act. We have to touch people.’”
Dr. Bernard Lown, professor of cardiology at the Harvard University School of Public Health, said in Modern Medicine magazine (September 30, 1978), that he believed it important for the physician to be present at the emergency room when his or her patient arrived. “Nothing is more decisive,” he said, “in determining the outcome following a heart attack than for the patient to see his own physician. You can provide reassurance and psychological support at this crucial time in the patient’s life.
“If you look at the total spectrum, 40 percent of patients who have a heart attack die. And patients are aware of this fact and perceive they may be dying.… A second important principle is the laying on of hands—a practice that is rapidly atrophying because physicians are too busy with a laying on of tools. Both presence and touch help to establish a reassuring connection with the patient. I believe that physicians must recognize this profound truth before turning to drugs—the lidocaines, the morphines, the quinidines, and the like. So when I arrive, I say to the patient: ‘Yes, you have had a heart attack, but you are going to recover.’ And I’m very dogmatic about it even though the attack may be so massive that I have great trepidations about prognosis.”
I mustn’t make it seem that medical technology does not represent a great boon in diagnosis and treatment. It is now possible, for example, to spare patients the ordeal of exploratory surgery because of a device that can enable the physician to peer directly into areas of the body that were not visible except by invasive procedures. The same device can be adapted to snip off harmful growths without having to perform deep surgery to get at them. Other machines are equally beneficial.
The problem with the new technology is that some practitioners tend to forget that these marvels can be intimidating to the patient, particularly when the last thing in the world the patient needs is another strange face or strange experience. Encounters with electronic gadgets call for careful psychological preparation, if the level of apprehension is not to be raised. All this requires time, of course. Time is the one thing that patients need most from their doctors—time to be heard, time to have things explained, time to be reassured, time to be introduced by the doctor personally to specialists or other attendants whose very existence seems to reflect something new and threatening. Yet the one thing that too many doctors find most difficult to command or manage is time. Indeed, some doctors tend to favor the new technology precisely because they don’t have time enough to allow the diagnosis to emerge from comprehensive direct personal examination, and from extended give-and-take with the patient.
Sometimes a battery of tests will be given pro forma, even though the need for them is not clear. This can be expensive for the patient. Dr. Grey Dimond, provost of the school of medicine of the University of Missouri at Kansas City, sent me the copy of a bill for medical services received by an elderly woman of his acquaintance. I quote from Dr. Dimond’s letter:
“The examining doctor had no compunction whatever in requesting $25.00 for an electrocardiogram; $20.00 for a ballistocardiogram (which is a useless procedure); $20.00 for an apexcardiogram (of no use in clinical practice); $35.00 for a vectocardiogram (totally of no recognized use in clinical medicine); $15.00 for a fluoroscopy (which he should not have been doing because of the risk to himself as well as the patient); $35.00 for a basal metabolism test (which is no longer done at teaching hospitals); and, finally, two urinalyses for $15.00 (I do not quarrel with these last two procedures simply because I do not know why they were ordered).
“I send this bill along to you, realizing that one such doctor’s billing proves nothing. I have watched this steadily happen, however, in American medicine, and you and I both know that the public is now highly vocal and greatly concerned over the disappearing attentiveness of the physician and the increasing mechanization of medical care.… When the physician placed himself on a fee schedule wherein he could justify his livelihood only by ‘doing something,’ he inevitably began shutting down the essence of a physician’s purpose: the human contact.
“At the same time, he automatically placed himself at the disposal of a computer appraisal, and equally, permitted surgical procedures and mechanistic medicine to have premium positions on the fee-for-service scale. There has been no corresponding dollar return for the time spent in taking a detailed history and doing a slow and purposeful physical examination, and above all making the patient understand what has been done, why it was done, and what is the appropriate health care program.”
The basic issue is not the usefulness of the new technology. It is the philosophical frame in which the new technology is brought into play and how it is used.
Perhaps the most serious consequence of the new technology is that it is pushing the doctor’s little black bag out of style and, possibly, out of existence. Indeed, one of the reasons why so many doctors decline to make house calls is not just that out-of-office functions are too time-consuming, but that they no longer feel comfortable practicing out of a little black bag. They have allowed their skills to be harnessed to computers and exotic electronic diagnostic equipment.
Hundreds of letters from doctors about the NEJM article reflected the view that no medication they could give their patients was as potent as the state of mind that a patient brings to his or her own illness. In this sense, they said, the most valuable service a physician can provide to a patient is helping him to ma
ximize his own recuperative and healing potentialities.
In my NEJM article I had allowed for the possibility that I might have been all wrong about the efficacy of ascorbic acid, and that I could have been the beneficiary of a self-administered placebo.
Dr. Bernard Ecanow and Dr. Bernard Gold, of the University of Illinois at the Medical Center, wrote to say that it was serious error for me to believe that the improvement in my condition after the systematic use of ascorbates was merely a placebo effect. They had done extensive research on the subject, and enclosed papers showing that ascorbate has a dispersal effect on clusters of red blood cells (RBCs). The reason my sedimentation rate had dropped after each intravenous dose of ascorbate, they said, was because it “produced dispersal of aggregated RBCs through its water structure breaking (hydrophobic bond-breaking) effect, breaking up the structural water macromolecular matrix so that the RBCs are no longer held together by it.”
I interpreted this explanation to mean that ascorbate was useful in restoring the chemical balances in the blood, or what Walter Cannon termed homeostasis.
Additional supporting data on the improvement in my condition after taking ascorbic acid came from the Lederle Research Laboratories. Drs. Arnold Oronsky and Suresh Kewar reported on research in their laboratories showing that ascorbic acid is essential for the proper functioning of prolylhydroxylase, which in turn is essential for the synthesis of collagen. The significance of ascorbate in the treatment of collagen diseases such as arthritis, therefore, seems compelling.
Earlier in this chapter, I referred to the work of Irwin Stone. With the exception of Albert Szent-Gyorgyi, Stone probably has probed more deeply into the phenomenon of ascorbic acid than any other medical researcher in the country.
Stone has attempted to account for the fact that the human species is unable to manufacture or store ascorbic acid, a vital ingredient in the immunological system installed by nature in all members of the animal kingdom except man and several other mammals.
Fascinated by this fact, Stone pursued his study of the subject both anthropologically and biochemically. He developed the theory that a genetic defect took place very early in the course of evolution: human beings lost their ability to make ascorbic acid and have had to depend on food containing the substance that plays so large a part in the immunological system. In areas where citrus fruits and certain vegetables were readily available, the regular diet compensated for the natural deficiency. In northern climes, however, the absence of citrus fruits resulted not just in scurvy but in increased susceptibility to a wide range of illnesses, minor and major.
Irwin Stone emphasizes that ascorbic acid, strictly speaking, is not a vitamin but a liver metabolite. Its primary reputation as a vitamin, however, has made it heir to the negative feelings of doctors because of the public’s tendency to be attracted to miracle vitamin cures. Stone is hopeful that the medical profession will make a distinction between ascorbic acid and other vitamins not because he undervalues the need for adequate intake of vitamins but because the therapeutic properties of ascorbic acid play such a vital role in the healing process. With respect not just to poor diet but to an environment becoming increasingly burdened with air and water pollution, congestion, noise, and stress, the antitoxic role of ascorbic acid cannot be overestimated.
I must not make it appear that ascorbic acid can be taken indiscriminately and in limitless doses. Under certain circumstances, it can cause irritation to the digestive system. Such irritation, continued regularly over a long period, may be harmful and even dangerous. Ascorbic acid, especially in potent concentrations, should not be taken between meals. It is most effective when combined with bioflavinoids. It has a tendency to absorb vitamin B, therefore requires B complex supplementation. It also tends to chelate minerals out of the body. These characteristics can be highly valuable as a method of treating lead-poisoning or as an antidote to lead in the environment. But minerals other than lead are also chelated from the blood as the result of large doses of ascorbic acid.
One can understand the apprehensions of the medical profession about the notion that vitamins are the answer to any illness. Yet it is also true that some doctors have fostered the equally erroneous idea that the average supermarket shopping basket is insurance against any nutritional deficiency. Considering the preservatives, coloring agents, additives, and sugar overload in many processed foods, it is relevant to refer once again to the pronouncement of the White House Conference on Food, Nutrition, and Health, in 1969; namely, that one of the great failures in the education of medical students is the absence of adequate instruction in nutrition.
In any event, it was encouraging to me, in going through the mail from doctors, to see the growing evidence of a balanced attitude about nutrition in general and ascorbic acid in particular. The negative views held by many doctors only a few years ago are now being replaced by a willingness to examine new findings and to apply them in proper proportion.
It is also encouraging to know that the medical profession is giving increased emphasis to immunology and to the natural drive of the human body to heal itself. Considerable mystery still surrounds this process. As indicated in an earlier chapter, one of the interesting clues now being pursued is the function of ascorbic acid in serving both the immunological and healing processes. In this connection, it is worth calling attention to the current practice of many British hospitals of administering intravenous doses of ascorbic acid instead of antibiotics as a routine postoperative procedure in guarding against infection.
A number of doctors felt that my emphasis on the positive emotions was in accord with an important new trend in medicine. They said it was scientifically correct for me to state in the NEJM article that, just as the negative emotions produce negative chemical changes in the body, so the positive emotions are connected to positive chemical changes. My attention was called to papers by Dr. O. Carl Simonton on emotional stress as a cause of cancer, and by Dr. J. B. Imboden and Dr. A. Canter showing that moods of depression impair the body’s immunological functions.
A dozen or more telephone calls came from physicians who shared the article with patients whose will to live was not very robust. The physicians asked if I would telephone their patients and attempt to encourage them. This I tried to do to the best of my ability. One case in particular is perhaps worth mentioning. A physician told me about his patient, a young lady of twenty-three, who was gradually losing the use of her legs because of a collagen-related illness. She lived with her family in Atlanta. One of the psychological problems was that the entire family was becoming unhinged by worry and despair. Hospital care was out of the question because the insurance benefits had long since run out.
Her presence at home, her doctor told me, produced an atmosphere of apprehension and tension. The fact of her progressive paralysis was translated into the visible anguish of all concerned. It was essential, therefore, that some way be found to keep the entire family from disintegrating. The doctor believed that a positive change in the daughter’s own feelings about herself was essential to any change for the better—not just in her own condition but in the collective health of the entire family. He had given her my article and she had responded so affirmatively that he felt a direct expression of interest from me would be useful. I telephoned the young lady, whom I shall call Carole. She spoke slowly but cogently as she described her difficulty, after two years, in believing that the paralysis would not become progressively worse until she would become totally disabled. Her doctor was trying to persuade her not to give up hope. He had told her that her medication and her exercises would work much better if she had goals in life and put her will to live fully to work.
I asked whether she thought this made good sense.
“It sounds fine in theory,” she said, “but I don’t think my doctor has ever been very ill himself, seriously ill, that is. He doesn’t know how long a day can be, how difficult it is to have goals when nothing happens, how your mind turns on all the things that you
aren’t supposed to think about, like how you aren’t getting any better and how week after week passes without any progress. You would understand it because you were there yourself. Weren’t you terribly discouraged?”
I said I was, especially at the start when I expected my doctor to fix my body as though it were an automobile engine that needed mechanical repair, like cleaning out the carburetor, or reconnecting the fuel pump. But then I realized that a human being is not a machine—and only a human being has a built-in mechanism for repairing itself, for ministering to its own needs, and for comprehending what is happening to it. The regenerative and restorative force in human beings is at the core of human uniqueness. Sometimes this force is blocked or underdeveloped. One of the most important things a doctor can do for a patient is to assess the capacity of each individual to put that force fully to work. Carole’s doctor was giving her important advice when he told her that his treatment would work best when combined with the natural drive of the body to right itself.
I was also fortunate, I said, in having a doctor who believed that my own will to live would actually set the stage for progress; he encouraged me in everything I did for myself.
Carole said she was curious about the laughter. Was it really as important in my recovery as the article had indicated?