The art of caring for the sick necessarily employs both subjective and objective ways of knowing, and transcends merely assembling information and doling out treatment, which may not work or even be chosen properly until an appropriate setting and a healing relationship are created for them.
As much as whatever we do to them, those afflicted with pain, suffering, and disability seek trusting relationships with friends, loved ones, and professionals, to help them make sense of what is happening to them, to construct a working mythology of their ailment, to discover and navigate a safe passage through it, and to envision a life beyond it, if possible.
But we always need to keep asking ourselves how well physicians accomplish these purposes, and how faithfully our words and actions on their behalf reflect what our patients actually feel and are bothered by. Like my allopathic colleagues, I take “illness” to refer to what people actually complain of, encompassing both the particular symptoms and the general malaise that prompt them to seek or avoid our help; and I also agree that these felt complaints can’t comprehend the full extent of their condition. So to try to understand the whole of the ailment, we must first decide how we know that someone is truly sick.
This is by no means a silly or rhetorical question, for if we stipulate that being sick is solely or primarily a sensation or subjective awareness of feeling ill in some way, then we ignore the obvious possibility that the patient, the doctor, or both could be mistaken, that they might either fail to notice a serious problem that hasn’t reached its full extent, or simply suspect or fear an illness that doesn’t materialize, as with our hypochondriacal patients who keep imagining the worst, even when no further evidence turns up.
If we suppose, on the other hand, that an adequate definition must rest on purely objective evidence, we are even more likely to fall into the opposite error, by singling out an abnormal but harmless variant, say, which the patient has lived with happily for years or even decades, and might never be bothered by in the future.
The obvious solution would be to postulate that illness should include both elements, an inner awareness of feeling unwell coupled with some manifest interference with normal functioning that could be witnessed by other observers, or even attested to by some microscopic or chemical deviation beyond what the senses can detect.
But modern medicine has consistently favored the objective vocabulary of “disease” as a more efficient and manageable substitute for the necessarily imprecise, subjective, and personal manifestations of illness as much as possible. Reducing illness to disease enables modern physicians to sidestep the metaphysical question of whether or not a person is really ill in favor of the practical task of organizing the myriad forms and manifestations of abnormality, dysfunction, and suffering into a taxonomy that assists both diagnosis and treatment.
After several notable attempts in ancient times, such as Greco-Roman theories of the four humors, the tripartite Hindu or Ayurvedic system, the Five-Element disciplines of China, Japan, and Tibet, and the innumerably diverse oral traditions of tribal and folk medicine, many of them still in use, the concept of disease in contemporary Western medicine is both distinctly modern and radically different from all of these.
The diagnostic process whereby living patients are assigned to abstract pathological categories deliberately ignores or downplays how they subjectively feel and even objectively function according to their own personal criteria, in favor of such associated cell and organ morphologies and statistical averages as permit objective comparison with others sharing the same pathology.
From that translation, it follows that crucial life decisions, such as whether to undergo surgery, radiation, or drug therapy, are regularly made on the basis of X-ray shadows, chemical abnormalities, and what biopsied cells look like under a microscope, despite the inconsistent correlation between many test results and how well or badly any given patient feels or functions, either then or later.
Having already dispensed with the “vital force” or unitary life principle of ages past, the modern paradigm prefers the limited but more precise unity of separate “disease processes,” such as cancer, hypertension, and tuberculosis, which can be defined solely on the basis of objective, measurable abnormalities — cancer cells, high blood pressure, and TB bacilli — and thus diagnosed and studied in the abstract, as concatenated sequences of physicochemical causes and effects, quite independently of the patients who happen to exhibit them.
Such pathological “entities” can then be used to group and ultimately explain the clinical signs and symptoms, insofar as the diagnostic abnormalities would naturally tend to produce them, like headache and neurological deficits in the case of brain tumors, heart disease and stroke for hypertension, or cough and hemoptysis for TB.
This elegant sleight-of-hand is still widely celebrated in the weekly or monthly ritual of “Grand Rounds,” formerly known as the Clinical-Pathological Conference, or CPC, wherein the medical history, physical examination, and laboratory tests of a particular patient are reviewed and discussed by the Attending Physician(s) to explain how the clinical diagnosis was arrived at, and then confirmed or refuted by the pathologist, who climaxes a series of anatomic and microscopic views of the surgical or autopsy specimen with the long-awaited announcement of what the patient really had.
The ulterior purpose of these exercises is to uphold the final authority of the disease process as the most accurate version of the patient’s underlying condition, whatever the clinical signs and symptoms, and thus in every respect superior to them in explanatory value.
Typically, the train of reasoning proceeds “backwards,” from the signs and symptoms of the patient to the pathognomonic features of the known disease process, which lead us to the anatomical structures or biochemical pathways that would have to be rendered dysfunctional in order to produce them, in much the same way that a plumber or auto mechanic deduces the offending meter, valve, or pipe from the faulty performance, and then locates it in a closed system of human manufacture.
An indispensable tool of clinical practice, assigning illnesses to abstract disease categories succeeds brilliantly in the diagnosis of acute illnesses and injuries, like heart attack, stroke, pneumonia, yellow fever, stomach ulcer, appendicitis, fracture, muscle strain, and so forth, by identifying, confirming, and in large part explaining the illnesses and discomforts that patients are actually living through.
Because they tend to exhibit a consistent natural history across the whole range of various possible reactions to them, these pathological “entities” also yield an approximate standard or average against which variations in severity, duration, clinical course, prognosis, and outcome can all be assessed and even predicted with considerable accuracy.
This ever-growing body of clinical experience may then be offered to the patient as a model of the healing work that remains to be done, as well as what to expect in the aftermath. Further proof of the relevance and accuracy of these diagnostic categories lies in the remarkably high degree of congruence between the clinical and the pathological data, as recapitulated in the Grand Rounds or CPC ritual just described.
Somewhat the same is true of subacute and intermittent conditions, such as rheumatic fever, pleurisy, nephritis, migraine, sciatica, asthma, malaria, and the like, even if chronic traces of these illnesses remain behind afterwards, since both their defining characteristics and the patient’s overriding concerns still refer back to the acute episode or flareup, in which subjective and objective elements again coincide quite closely, and thus invite deeper levels of understanding.
In other words, they too may fairly be called “diseases” in the modern sense, precisely because they are also illnesses, such that the patient’s signs and symptoms can be comprehended and at least in part explained as pathological mechanisms, which have in turn been elucidated by observation and experiment.
In relatively well-defined diseases of this kind, the patient’s lived experience of illness remains distinct from the pathological knowledge that was acquired in order to explain it, and continues to exist side by side with it, such that the “disease” perspective, which applies equally to all patients with the same diagnosis, and the “illness” perspective, which seeks out those features which are peculiar to and characteristic of each individual, tend to complement and enrich each other, to achieve the optimal “fit,” as beautifully described by Kathryn Montgomery Hunter:
The physician’s task is to make sense of the patient’s story in the generally accepted terms and concepts of the scientific world. Yet the two narratives, the physician’s account and the patient’s story out of which it was made, continue to exist side by side.
Although the patient’s story is contained in and explicated by the physician’s, it has not been replaced by it. Nor are the two narratives simple translations of each other. They are incommensurable: neither can be comprehended in or simply reduced to the other’s terms.
The medical interpretation of the patient’s story bears great power for healing. As the location of the malady in the social universe, a diagnosis relieves suffering in itself, as well as in the guidance it provides for therapeutic action. Like all power, it must be exercised with care.
Diagnosing without Illness.
In both diagnosis and treatment, successful practitioners learn how to use both of these perspectives idiomatically and synergistically in each case. But the “disease” model becomes misleading, and indeed potentially harmful, when the patient is asymptomatic and comes in for a routine “checkup” to detect traces or precursors of disease at an early stage, typically by means of laboratory abnormalities that are as yet imperceptible to the patient but statistically linked to overt diseases in the future.
A classic example of the latter is “essential” hypertension, an abnormally high blood-pressure reading without organ pathology to account for it, a purely statistical abnormality based on readings above a predetermined normal range and studies linking them with higher rates of stroke, heart attack, and cardiac failure years and even decades later.
Just as modern diseases are said to differ from health only in degree, newer studies keep placing that threshold lower and lower, to the point where a 2008 editorial in the New England Journal of Medicine came perilously close to recommending a lifetime of drug treatment for blood pressures of 115/75 or above, a level previously thought optimal, which would implicate more than half of the entire adult population.
Such vague, uncertain, long-term diagnostic categories, which lack precise definition, extend far into the future, and are related to illness purely statistically, yet are widely accepted by doctors and patients alike as grounds for long-term drug therapy, exemplify what some clinicians and philosophers have called the “nocebo” effect, the tendency of merely bestowing such a diagnosis to sicken and harm patients, by imprinting the fear and expectation of developing a serious illness in the future, and by providing a compelling rationale for treatment with powerful and dangerous drugs for decades, if not permanently.
Just such preventive screening has long since become the main focus and rationale of the customary “annual physical,” which is essentially a fishing expedition in which physicians are trained and expected to conduct a thorough, head-to-toe search for the slightest traces, hints, and harbingers of diagnosable pathology, both present and future. Such early detection is still highly regarded as the leading edge of the medical enterprise, despite major theoretical and practical dilemmas at the heart of it.
One common and essentially insoluble problem is subjective bias, which complicates the interpretation of many such tests. One retrospective study of mammograms in women previously biopsied and diagnosed with breast cancer revealed large variations in the blinded readings of board-certified radiologists and their recommendations for further workup that were sufficient to cast serious doubt on the efficacy of the procedure as a tool for detecting breast cancer and its precursors.
For 150 women already diagnosed with cancer, the radiologists’ positive readings ranged from 74% to 96% of the total, a discrepancy of nearly one-fourth, depending on the radiologist, while for 123 women who did not develop cancer, their negative readings ranged from 11% to 65%.
No less prevalent, important, and difficult to prevent are theoretical errors inherent in the concept of the test, like the significant possibility that what it measures is a normal variant, either harmless, irrelevant, or misleading as a predictor of serious illness.
The same widely felt urgency about early detection of breast cancer again provides a striking example, based on the traditional breast exam and the identification of “fibrocystic disease” as a pre-cancerous lesion meriting biopsy and close surveillance.
This rationale was finally discredited by Susan Love, the esteemed breast surgeon, who demonstrated that the abnormality is only a nodularity under hormonal control, found mostly in healthy women, and not a risk for breast cancer.
Even more to the point, the actual risk factor she did find was a previous breast biopsy, regardless of why it was done or what it showed, simply by magnifying both the patients’ and their doctors’ already considerable fears, thus prejudicing their subsequent readings and adding to the already large total of false-positive diagnoses in women who were not ill and might never have become so if the biopsy hadn’t been performed in the first place.
A similar conundrum overshadows the debate about prostate cancer, which is defined by microscopic changes that almost all adult males will eventually develop if they live long enough, and that in the vast majority of cases will produce no symptoms, no functional impairment, and has no clinical significance whatsoever.
It is nevertheless a major problem for the imagination, because some men will become seriously ill and die from it, because almost everyone dreads suffering and death, and because nobody knows or can know who will fall ill, who will recover, who will live, and who will die. Resolving these intractable dilemmas is the worthy mission of the Prostate-Specific Antigen or PSA test, which measures a glycoprotein in seminal fluid that is secreted by the prostate, spills over into the blood to some extent, and is used to detect prostate cancer at its earliest and presumably most curable stage.
The PSA level rises substantially with age, after ejaculation, with benign prostatic hypertrophy and prostatitis, and tends to fall in parallel with low testosterone levels, as well as varying significantly from day to day in normal life.
According to the Harvard Medical School Guide to Men’s Health, blood levels of 0-4 ng. per ml. are generally read as normal, levels of 4-10 ng. as “borderline,” and those above 10 ng. as unambiguously abnormal.
But these seemingly precise thresholds have likewise been shown to be arbitrary and inexact, with no clear or fixed boundary between levels that are clinically unimportant and those that accompany or predict serious illness, as well as including the inevitable percentage of false positives and false negatives.
As with mammograms, breast biopsies, blood pressure, cholesterol, and many other such tests, the net effect of regular preventive screening for specific diseases is often simply more and more hypochondriacal versions of the same basic dilemma that we started with.
Always in the name of greater precision, the PSA clearly measures something relevant to prostate function, yet in the end leaves us dangling on nothing more reliable than a risky wager on the outcome for you and me. Once again, our genuine fear, doubt, and uncertainty are prodded and bullied into more and more tests and procedures by our own obsessive need and ambition to diagnose as many diseases and abnormalities as possible, as far in advance of actual illness as possible, and regardless of the significant probability that they will never materialize or become actual health problems at all.
This already knotty problem is then magnified still further by the opposite experience that screening for subclinical abnormalities can sometimes be lifesaving, by preventing or at least postponing a death that would surely have occurred if it hadn’t been done. Just such a patient came to see me a few years ago, a single mom in her late thirties with two young children who had been my patient for several years, and arrived quite distraught, and sobbing uncontrollably, after a routine Pap smear had found a large number of what her gynecologist described as “highly abnormal and suspicious cells,” for which he recommended a radical hysterectomy even though and indeed precisely because she felt entirely well, had no other complaints or symptoms, and ultrasound, colposcopy, and endometrial biopsy had all failed to detect a localized tumor mass to account for them.
Consulting another gynecologist for a second opinion at my request, she learned that the original Pap smear actually read “adenocarcinoma, type undetermined,” which explained why immediate action was called for, and why the first doctor had lied that she didn’t have cancer, had urgently insisted on the surgery as a 100% effective way of preventing the near-certainty of it in the future, and had thus promised her more than he could reliably deliver to persuade her to accept the best that he or anyone else he knew of could possibly offer.
Under these circumstances, everyone concerned, her two specialists, the patient herself, and even I, in spite of everything I’ve just been saying, accepted the provisional truth of this report as signifying a very high probability of imminent, life-threatening illness, and agreed on the urgency for some kind of active and timely intervention to try to save her life, or at least to buy her as much time as possible.
By that calculus, neither she nor I had the slightest doubt that her diagnosis was accurate, useful, and indeed indispensably valuable to her, however grim and terrible the news it brought, and however disfiguring if not worse the action it called for would almost certainly be.
From abnormality into disease.
Beyond simply broadening and redefining abnormalities like hypertension, high cholesterol, and the like in accordance with the drug industry’s commercial priorities, even normal physiological processes have become fair game for such exploitation, as new abnormalities are identified, new drugs developed to correct them, and new “diseases” created after the fact as an appropriate marketing strategy to justify them.
A classic example is the exploitation of menopause, beginning innocuously with the short-term use of estrogens to relieve hot flashes and other symptoms, but soon progressing to X-ray detection of osteoporosis and “osteopenia,” and ultimately to prescribing estrogenic hormones routinely and long-term to millions of women, in order to prevent hip and spinal fractures, cardiovascular disease, dementia, and other ailments of middle and later life.
The unprecedented scale of this sales pitch and the new diagnosis invoked to justify it, goaded Dr. Love into writing another eloquent dissent, “Sometimes Mother Nature Knows Best,” in which she denounced Big Pharma’s redefinition of menopause as a disease requiring treatment, and its commodification of the female life cycle itself as a legitimate target: The pharmaceutical industry and the medical profession have discovered a new disease: menopause, or estrogen-deficiency disease.
Women with hysterectomies may want to take hormones until the natural age of menopause, while others have hot flashes and insomnia that warrant treatment. No one argues that short-term use is dangerous, but the push is on to use these drugs long-term, as “disease prevention.”
ACOG recommends that every post-menopausal woman should be on hormones for life unless she has a compelling reason not to be. Menopause is no disease, but a normal part of life. A woman’s ovaries don’t shut down: they continue to produce hormones well into her 80’s.
The medical profession has recently redefined osteoporosis, which once meant only fractures in the thin bones of old women, but now is defined as low bone density. Women are encouraged to get bone density tests just like mammograms and Pap smears. The result is healthy 50-year-old women being diagnosed with osteoporosis, even though on average they don’t have hip fractures until they’re 79.
Someone once said, if you’re healthy, you haven’t had enough tests. We need accurate information, lest vested interests sell us a bill of goods. Dr. Love’s words went unheeded for years, until the explosion of breast cancer finally made long-term hormone-replacement therapy unfashionable. By then the industry had already produced and marketed a whole new generation of even more potent and dangerous drugs, the biphosphonates, which they claimed would prevent fractures by increasing the bone density, manipulating the critical and still poorly-understood mechanism of bone formation, and calcium and phosphorus metabolism in particular, which influence and therefore potentially threaten the structural integrity of the body as a whole.
The unregulated, unrestrained proliferation of these profitable diagnostic possibilities led Bernard Lown, the noted cardiologist and humanitarian, to question the unqualified need for early diagnosis and the endless multiplication of druggable diseases that results from it: Medicine has expanded into almost all facets of human existence, including conditions that do not cause symptoms
or impair life, but indicate potential illness in the future, such as high blood pressure, blood sugar, cholesterol, osteoporosis, colon polyps, heart murmurs, carotid artery narrowing, memory loss, and sun exposure: the list is constantly expanding. Everyone is tied to the medical establishment from birth, resulting in being preoccupied with survival, rather than the challenge of creative living.