Where Medicine Fails

Carolyn L. Wiener, Anselm L. Srauss

• Publisher: Routledge
• Year: 2018
• ISBN:
  9781351299220
• Edition: 5
• Topic: Médecine
• Subtopic: Déontologie en médecine

This fifth edition of Where Medicine Fails, like previous editions, argues for a broader definition of society's responsibilities to the ill than is commonly perceived to be the case. The authors examine the moral and economic implications of medical technology, especially in regard to fetal tissue transplant, cancer survival, childbirth, and dying, and provide a thoughtful assessment of the issues and challenges facing American hospitals. Seventeen chapters are new to this edition. The aim of this volume is to encourage serious examination of the current structure of health services and of the complicated facets of health care reform.

Part I

Economics vs. Moral Issues

Chronic Illness

Anselm L. Strauss

Smallpox, diphtheria, polio, measles—conquered through immunization. Tuberculosis, leprosy, plague, yellow fever, malaria—defeated or checked by sanitation, improved living conditions, and effective treatment.

In the old days, people who died from diseases contracted them quickly, reached crisis shortly thereafter, and either died or pulled through. Modem medical researchers have changed this dramatic pattern by taming many once-devastating ailments. Improved conditions of living, along with effective medical skills and technology, have altered the nature of illness in scientifically advanced societies. While patients suffering from communicable diseases once filled most hospitals, treatment centers now serve mainly those afflicted with chronic ailments.

Many who would have died soon after contracting a disease now live and endure their affliction. Today most illnesses are chronic diseases— slow-acting, long-term killers that can be treated but not cured. A 1964 survey by the Department of Health, Education, and Welfare indicates that about 40 percent of all Americans suffer from one or more chronic diseases; one out of every four so afflicted have lost some days at work because of disabling symptoms.

A large and growing body of medical literature presents detailed discussions of etiology, symptomatology, treatments, and regimens. This outpouring of information, however, generally ignores a basic aspect of chronic illness—how to deal with such ailments in terms that are social—not simply medical. How can patients and professionals cope with health-related problems of family disruption, marital stress, role destruction and adjustment, stigmatization, and even loss of body mobility?

Each chronic condition brings with it multiple problems of living. Among the most pressing are preventing and managing medical crises (that go even to death), managing regimens, controlling symptoms, organizing one’s time efficiently, preventing or living with social isolation, adjusting to changes in the disease trajectory, and normalizing interaction and life, despite the disease. To handle those problems, people develop basic strategies which call for an organization of effort (including that of kinsmen, neighbors, and health professionals). To establish and maintain this organization requires certain resources (financial, medical, familial, and so forth), as well as interactional and social skills in order to make the necessary arrangements.

Medicine and the health professionals are very much included in this scheme but are neither at the scheme’s focal point nor even constitute its primary elements. What is primary is simply the question of living: the difference between chronic sufferers and “normal people” merely being that the former must live with their diseases, their symptoms and often with their regimens. Medicine may contribute, but it is secondary to “carrying on.”

Coping with Crises

Some chronic diseases carry a constant threat of grave medical crises. Diabetics may fall into insulin coma and die; epileptics can go into convulsions (which of themselves are not lethal) and be killed in a fall or a traffic accident. In order to prevent crises, minimize their effects, get the critically ill person into the hands of a physician or a hospital staff—and if need be actually save him—the person himself and possibly his kinsmen must be organized and prepared to handle all contingencies.

Relevant to the question of crises is how far they can go (to, or short of, death), how fast they appear, the clarity of advance warning signals to laymen or even to health professionals, the probability of recurrence, the predictability of their appearance, the complexity of the saving operations, and the speed and completeness of recovery from them.

The ability to read signs that portend a crisis is the first important step in managing chronic illness. Thus, diabetics or the parents of diabetic children learn how to recognize the signs of oncoming sugar shortage or insulin shock and what to do in case of actual crisis. Likewise, epileptics and sickle cell disease sufferers, if they are fortunate enough to have warning signs before their crises, learn to prepare themselves: if they are in public they get themselves to a place of safety and sit or lie down. Diabetics may carry instructions with them and may also carry those materials, like sugar or candy or insulin, which counteract the crisis; and epileptics may stuff handkerchiefs between their teeth just before convulsions.

When signs aren’t properly read, are read too slowly or are interpreted as meaning something else, then people die or come close to dying. This may happen the first time a cardiac patient experiences severe chest pains and doesn’t yet know their cause or treatment. (After the first sequence the patient may put his doctor’s name close to the telephone for emergency use.) Even physicians may misread signs and so precipitate a crisis—even death. If an unconscious sickle cell anemia sufferer is brought bleeding to a hospital he may die if the natural immediate effort is made to stop his bleeding. Patients who carry instructions with them can sometimes avoid difficulties. Whenever an unconscious individual is brought into the emergency room of the nearest hospital, the physicians there understandably may treat him for the wrong disease. Inexperienced patients who are on kidney dialysis machinery may not realize that their machinery is working incorrectly and that their bodies are nearing crisis. The complexity of the human body can cause even experienced persons to misread important signs.

Any breakdown or disruption of the crisis-preventing or crisis-coping organization can be disastrous. Family strain can lead to the abandonment of or lessening control over regimens, and temporary absence of “protective agents” or of “control agents” (such as mothers of diabetic children who are prone to eat too much candy) can also be traumatic. A divorce or separation that leaves an assisting agent (a mother helping her cystic fibrosis child with absolutely necessary exercises) alone, unrelieved with her task, can gradually or quickly lead to a crisis. (One divorced couple arranged matters so that the father relieved the mother on weekends and some evenings.) Even an agent’s illness can lead to the relaxation of regimens or the elimination of activities that might otherwise prevent crisis.

There is also a post-crisis period, in relation to the organization of effort. Some failure of organization right in the hospital can be seen when the staff begins to pull away from a cardiac patient, recently saved from a heart attack, but now judged “less critical” than other patients. Back home, of course, some patients require plenty of family organization to prevent additional attacks. What is not so evident is that the patient and his family may read signs of improvement where few exist, or that contingencies may arise which render faulty the organization for crisis prevention and crisis management. Relevant variables here are the length and rapidity of recovery—since both of these may vary for different disease conditions.

During an extended period of crisis the family may need to make special arrangements about their time (for visiting the hospital, for nursing the patient at home) and their living space (having the bed downstairs rather than upstairs, living near the hospital during the peak of the crisis). They may have to juggle the family’s finances or spell each other in nursing the patient during his crisis. Even the patient himself—in trying to get better rather than giving up—may have to contribute to the necessary organization of effort to bring the family through the crisis period.

Unless the physician is absolutely helpless in the face of a given chronic disease, he will suggest or command some kind of regimen. Adhering to regimens, though, is a very complex matter, for regimens can sometimes set problems so difficult that they may present more hardships than the symptoms themselves.

Patients do not adhere to regimens automatically. Those who accept and maintain a regimen must have abiding trust in the physician, evidence that the requirements work without producing distressing or frightening side effects (or that the side effects are outweighed by symptom relief or fear of the disease itself), and the guarantee that important daily activities, either of the patient or of people around him, can continue relatively uninterrupted.

In addition to the time it takes and the discomfort it causes, an important property of a given regimen is whether it is visible to other people, and what visibility may mean to the patient. If the regimen means that a stigmatized disease can be suspected or discovered, the person is unlikely to carry it out in public. (Tuberculosis patients sometimes have this problem.) If the visible regimen is no more than slightly embarrassing or is fully explainable, then its visibility is much less likely to prevent its maintenance in public or private.

Another property is also important: if the regimen appears to work for the patient, then that may convince him that he should continue with it. But continuance is problematic, not only because the other properties noted above may counteract his best intentions or his good sense, but because once a regimen has brought symptom relief, the patient may forego the routine—no matter what the physician says. This is exactly what happens when tuberculosis patients see their symptoms disappear, and figure that now they can cut out—partially or totally—their uncomfortable regimen.

The very properties of the regimen, then, constitute contributing conditions for adhering, relaxing, or even rejecting the prescribed activities. Thus, if the patient simply denies that he has the disease (as with tuberculosis, where many patients experience no symptoms), he may not cany out his regimen. Instructions for a treatment routine may leave him confused or baffled: cardiac patients told to “rest” or “find their own limits” can be frustrated because they don’t really know what “sufficient rest” means.

Patients and kinsmen inevitably enter into negotiations with each other, and sometimes with the physician, over relaxing or otherwise changing (substituting one drug for another, one activity for another) the regimen. They are negotiating not only over such matters as the elimination of discomfort and side effects, but also the possibility of making the management of ordinary life easier or even possible. Physicians, of course, recognize much of this bargaining, but they may not realize just how high the stakes can be for the patient and his family. If a doctor ignores those factors, his patients may go shopping for another physician or, at the least, he may quietly alter his regimen or substitute part of it with something recommended by an amateur—pharmacist, friend, or relative.

Symptom Management

The control of symptoms is obviously linked with adherence to effective regimens. Like adherence to regimen, symptom control is not merely a matter of medical management. Most of the time, the patient is far from medical facilities, so he and his family must rely upon their own judgment, wisdom, and ingenuity in controlling symptoms—quite aside from faithfully following the prescribed regimens. Some physicians— probably not many—recognize that need for judgment.

Whatever the sophisticated technical references may be, the person who has symptoms will be concerned primarily with whether he hurts, faints, trembles visibly, has had his mobility or his speech impaired, or is evidencing some kind of disfigurement. How much they interfere with his life and social relationships depends on whether they are permanent or temporary, predictable or unpredictable, publicly visible or invisible; also on their degree (as of pain), their meaning to bystanders (as of disfigurement), the nature of the regimen called for to control the symptom; and of course on the kinds of life-style and social relations which the sufferer has been accustomed to.

Even minor, occasional symptoms may lead to some changing of habits, and major symptoms may call for the redesigning or reshaping of important aspects of a patient’s life-style. Thus, someone who begins to suffer from minor back pains is likely to learn to avoid certain kinds of chairs and even discover to his dismay that a favorite sitting position is precisely the one he must forego. Major adjustments could include moving to a one-story house, buying clothes that cloak disfigurement, getting the boss to assign jobs that require less strength, using crutches or other aides to mobility. In one case a mailman suffering from colitis lived “on a leash,” having arranged never to be very far from that necessary toilet. Emphysema patients learn to have “puffing stations” where they can recoup from lack of breath while looking like they have stopped normally.

Ideas for redesigning activities may come from others, too. A community nurse taught an emphysema patient how to rest while doing household chores; a sister taught a patient afflicted with brittle bones (because of a destructive drug) how to get up from the toilet, minus a back brace, without breaking bones in her back. Another woman figured out how her cardiac-arthritic grandfather could continue his beloved walks on his farm, by placing wooden stumps at short distances so that he could rest as he reached each one. Unfortunately, kinsmen and health professionals can function in just the opposite fashion: for instance, a woman with multiple sclerosis had carefully arranged her one-room apartment so that every object she needed was literally within arm’s reach; but the public health nurse who visited her regarded the place as in a terrible shambles and proceeded to tidy things up herself.

Perhaps inventiveness, just as much as finances or material resources, is what makes the difference between reaching and not reaching some relatively satisfying redesign of life. The cancer patient with lessened energy who can ingeniously juggle her friends’ visits and telephone calls can maintain a relatively unimpaired social life. Arthritic farm women who can get neighbors to bring in groceries can live on their farms during the summer although they must move to town for the winter months. One multiple sclerosis patient who is a student not only has rearranged her apartment but persuaded various people to help her manage despite her increasingly restricted mobility. A veritable army of people have come to her aid: the university architect redesigned certain of the public toilets for her wheelchair and also put in some ramps; the handymen around the university help her up and down stairs, by appointment; they also have rebuilt her cupboards so that she can reach them from her wheelchair; and so on.

Lack of imagination about useful redesigning makes symptom control harder. This lack of imaginative forethought can be seen in many homes for the elderly where stiff-jointed or low-energy people must struggle to rise from sitting positions on low sofas and chairs, or must painstakingly pick their way along highly polished corridors—minus handrails.

The reshaping of activities pertains also to the crucial issue of “interaction.” A variety of judicious or clever maneuvers can keep one’s symptoms as unobtrusive as possible. Sometimes the tactics are very simple: a college teacher with bronchitis, whose peak load of coughing up sputum is in the morning, arranges his teaching schedule so that he can stay at home, or at least in his office, until after lunchtime. Another person who tends continually to have a runny allergic nose always carries tissue in her hand when in public. Another with a tendency to cough carries cough drops with him—especially important when he attends concerts. An epileptic may have to persuade acquaintances that his epileptic fits are not communicable! Emphysema sufferers learn to sit down or lean against buildings in such a fashion that they are not mistaken for drunks or loiterers.

Agents of various kinds can also be useful—wives who scout out the terrain at a public meeting to find the least obtrusive spot, and then pass on the information to their husbands in wheelchairs or on crutches. Spouses may have prearranged signals to warn each other when a chronic symptom (for example, runny nose) starts appearing. In a more dramatic instance a couple was attending a party when the husband noticed his wife’s temporarily slurred speech—a sign of her tiredness and pain from cancer. Since they did not want to have their friends know of her illness, he acted quickly to divert the others’ attention and soon afterward manufactured an excuse so that they could leave the party.

When visible symptoms cannot easily be disguised, misleading explanations may be offered—fainting, for instance, is explained away by someone “in the know” as a temporary weakness due to flu or to some other reasonable cause. When a symptom cannot be minimized, then a wife may attempt to prepare others for the distressing sight or sound of her husband’s affliction. The sufferer himself may do this, as when a cancer patient who had lost much weight warned friends, over the phone, that when they visited they would find her not looking like herself at all. Each friend who visits is very likely, in turn, to warn other friends what to expect.

Various chronic diseases lead to such disruption that they call for some temporal re-ordering. One all-too-familiar problem is too much time. It may only be temporary, as with persons who are waiting out a post-crisis period, but, for the disabled elderly or victims of multiple sclerosis, it may be a permanent condition. Among the consequences are boredom, decreased social skills, family strains, negative impact on identity, and even physical deterioration.

Just as common is not enough time. Not only is time sopped up by regimens and by symptom control, but those who assist the patient may expend many hours on their particular tasks. Not to be totally engulfed, they in turn may need to get assistants (baby-sitters, housecleaners, cooks) or redistribute the family workload. Occasionally the regimens require so much time, or crises come so frequently (some sickle cell anemia sufferers have been hospitalized up to 100 times), that life simply gets organized around those events; there is not enough time for much of anything else. Even just handling one’s symptoms or the consequences of having symptoms may require so much time that life is taken up mainly with handling them. Thus, a very serious dermatological condition forced one woman to spend hour after hour salving her skin; otherwise she would have suffered unbearably. Unfortunately, the people who suffer cannot leave their bodies. Kinsmen and other assisting agents, however, may abandon their charges out of desperation for what the temporal engulf- ment is doing to their own lives. Abandonment, here, may mean shifting the burdens to a nursing home or other custodial institution, such as a state mental institution.

The term “dying trajectory” means the course of dying as defined by various participants in it. Analogously, one can also think of the course of the chronic disease (downward in most instances). Like the dying trajectory, that course can be conceived as having two properties. First, it takes place over time; it has duration. Specific trajectories can vary greatly in duration. Some start earlier, some end later. Second, a trajectory has shape. It may plunge straight down; it may move slowly but steadily downward; it may vacillate slowly, moving slightly up and down before diving downward radically; it may move slowly down at first, then hit a long plateau, then plunge abruptly even to death. Neither the duration nor shape of a dying trajectory is a purely objective physiological property. Both are perceived properties; their dimensions depend on when the perceiver initially defines someone as diseased and on his expectations of how the disease course will proceed. (We can add further that dying trajectory consists merely of the last phases of some chronic disease trajectories.) Each type of disease (multiple sclerosis, diabetes, and so forth) or subtype (different kinds of arthritis) may have a range of variation in trajectory, but they certainly tend to be patterned in accordance with duration and shape.

It would be much too simplistic to assert that specific trajectories determine what happens to a sense of identity; but certainly they do contribute, and quite possibly in patterned ways. Identity responses to a severe heart attack may be varied, but awaren...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Introduction to the Fifth Edition
• Part I. Economics vs. Moral Issues
• Part II. Compound Fracture: The American Hospital
• Part III. Health Policy and Reform
• Contributors