This article was published in Scientific American’s former blog network and reflects the views of the author, not necessarily those of Scientific American
Today health is a commodity, disease is a product line and physicians are a sales force in the employ of a predatory enterprise. All this happened in the past 30 years in America1 and the rest of the resource advantage world seems hell bent to catch up. How did we arrive at this state of affairs? Can we retreat from it? If there is a better way, can patients demand we take that path?
Health, disease, and “the doctor” are constructions peculiar to a particular culture at a particular time. Each is supported by pronouncements, theories, claims, and recriminations. The difference today is the availability of a body of scientific information that can question, even discard, whatever in the din has been shown to be fatuous. What remains after the paring are the iterations of health, disease and “the doctor” that are defensible and sensible today. They may be only a way station in the evolution of the role of medicine in our culture, but they offer a foundation for rational health care reform today. The following are the guideposts that patients need in demanding rational reform:
Health
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What do we mean by “health”? One can enjoy “good health” or suffer “bad health”. Is “bad health” no more than the absence of “good health”? Is there a continuum between “good” and “bad health”? Health is not the absence of symptoms; all of us will suffer symptoms repeatedly, symptoms which give us pause without compromising our belief that we are basically well. Episodes of backache, headache, heartache, heartburn, “colds”, “flu” and much more are predicaments of life for which most are a match most of the time. Despite such predicaments, we remain in “good health.”
“Health” is a reflection of the degree to which we feel complete in our bodies tempered by the degree to which we perceive that sense to be threatened. These threats test our coping skills. We are no match for some, such as crushing chest pain or fractured hips. But for many of us, most of the time, the threats just give us pause. We mobilize resilience to maintain a sense of invincibility even in the face of countervailing advice. The more strident this advice, the more our resilience is tested.
People have as much a need to understand the breadth of experience encompassed by the notion of health as to understand the boundaries that indicate its absence. It follows that medicine is as duty bound to forewarn the public about the best and latest efforts to medicalize experiences of normal life as to inform the public about the utility of the best and latest efforts to treat the abnormal. There is a robust science that can promote informed decisions about health just as it can about disease. The degree to which medicine fails in this aspect of “health promotion” is the degree to which it facilitates the marketing of health as a commodity.2
Disease
The terms illness and disease are synonymous in parlance, but not always in literature. I follow the precedent set forth by Edward Huth, editor emeritus of the Annals of Internal Medicine, who defined illness as the symptoms that brought one to the doctor and disease as what one has “on the way home from the doctor’s office. Disease is something that an organ has; illness is something that a man has.”3 Hence, any challenge to our sense of invincibility remains a predicament of life unless we feel compelled to consult a physician. Then the person becomes a patient, the predicament becomes an illness, and the expectation is that the physician will identify the causal disease, smite it a mighty blow thereby converting the patient back into a person.
This paradigm is the pride of modern scientific medicine. The patient expects the physician to engage this challenge at all cost and at all risk; the physician is rewarded for the exercise even if it fails. In that event neither the physician nor the exercise is considered culpable. Rather the victim is blamed for having a disease that was either too elusive or too severe to yield to modern medical miracles.
However, no patient would embark on a diagnostic Odyssey unless they presumed that a salutary reward was likely. Medicine has a robust science that can inform this decision node. No matter how theoretically promising, technically demanding, expensive, novel, dangerous, or well marketed, would any patient accept treatment if they understood that attempts to demonstrate meaningful efficacy have come up short? Choosing to abort the cure-at-all-cost paradigm is not a failure of initiative on the part of the patient or the physician. It is the clarion calling for caring for the person who opted to be a patient. It is helping the patient reframe illness in a format that suggests a higher yield, or at least avoids iatrogenesis.4The degree to which patients are encouraged to pursue the futile and the unnecessary is the degree to which disease is turned into a product line.
The Doctor
An effective doctor-patient interaction commences with the intertwining of 3 strands of interpretation in order to arrive at mutual understanding: the context that engendered the consultation, the nature of the complaint, and the limitations of causal inferences. The interpretations are always laden with presupposition and prejudice by both parties. Until very recently, there was little about this interaction that was equitable. Earlier generations of patients were largely in awe of the rituals, ignorant of the details of the clinical process, and desirous of pronouncements. That is no longer the rule.
No patient enters the office without having undertaken his or her own exercise in diagnosis. As a corollary, rare is the patient who is not burdened with preconceptions as to appropriate therapies. Information and misinformation of this nature abound thanks to pronouncements from all sorts of media and marketing outlets. Judgment as to health options is limited by the validity of the information describing the value of the options.
One might hope that indemnity schemes would champion cost-effectiveness. However, health insurance schemes are pummeled by realpolitik; providers and purveyors have an investment in their offerings that does not yield readily to notions of cost-effectiveness. The physician who attempts to lead patients out of this vortex by objectively considering clinical options with them is in for time-consuming buffeting by patients and peers – and seldom for applause. Some persevere but not enough to alter the clinical landscape.
As a result, pervasive medicalization hides under the rubric of “health promotion, disease prevention”. Under the banner of “medical miracles” hides a range of interventions that have failed scientific testing for meaningful efficacy. Under the banner of “access to care” hides leveraged institutions that treat people as a marketplace. Under the banner of “economy of scale” hides a burgeoning bureaucracy. As recently as a generation ago, medicine was a profession that would have found such labels as “industry”, “business” or “enterprise” anathema if anyone had the temerity to suggest such. Now such descriptors are accepted, even sought after, so that “health care” now supports stakeholders with vast equity positions. Physicians are part of a team that is expected to serve the needs of the enterprise as the overriding goal with the presumption that is so doing, “health care” is a result.
The Evidentiary Basis for Salutary Patienthood
However, the same elements that were harnessed to create today's notions of health, disease and “the doctor” can be harnessed to another that considers health its sole raison d'être. Defining disease is but an aspect. Some of the elements that are prerequisite to health are in the purview of the patient-physician relationship. No longer does an imperious pronouncement by a physician suffice nor should “common practice” prevail. Rather, the patient should occupy the driver’s seat with the physician as navigator. There are 2 prerequisites to this level of collaboration:
Trust must be established. That requires time and proclivities on the part of both patient and physician. Without trust it is impossible to decide if the pursuit of disease is a rational approach to the maintenance of health. Otherwise, when appropriate, a patient with backache cannot countenance the likelihood that the illness might better be framed as a surrogate complaint for challenges at home or work that thwart coping. Likewise, a patient with persistent fatigue or widespread pain will balk at the possibility that the symptoms are “in their mind” and merit reframing rather than pharmaceuticals.
For each option in diagnosis and intervention, the patient must be encouraged to ask, “Based on the available science, what is the best I can expect?” And then actively and with comprehension, listen to the answer. For some options, there is no informative science to hone the therapeutic relationship. For some options, the science is compelling. For many, the science may be robust but demonstrations of efficacy have proved elusive, inconsistent or marginal. Examples of the latter include interventions for occlusive atherosclerotic disease; elective procedures on backs, shoulders and knees; pharmaceutical management of cognitive impairment situational affective disorders, type 2 diabetes and essential hypertension; and many screening protocols. The therapeutic decision hinges on how the patient values the remote possibility of benefit and the probability of harm. If the patient finds the decision imponderable, the fall back no longer is “What would you do, doctor?” The 21st Century fall back is “If you were me, what would you do, doctor?” The answer hinges on the trusting nature of the therapeutic relationship.
This is not an argument for denigrating the physician or the profession of medicine. It is an argument for the physician and the medical profession to assume an enlightened and enlightening role in contemporary society, one based on collaboration as to the limits of certainty and a proclivity to negotiate options whenever those limits are exceeded. It is a call for medicine to be truly a service profession. It is a call for placing any predicament, illness, or disease in the broad context of the course of life. It is a call for people and for patients to understand these goals and make them their own.
References:
Hadler NM. Citizen patient. Reforming health care for the sake of the patient, not the system. UNC Press, 2013.
Hadler NM. Worried sick. A prescription for health in an overtreated America. UNC Press, 2012.
Huth EJ. Illness. In Cassell E, ed. The healer’s art: a new approach to the doctor-patient relationship. Lippincott, 1976.
Hadler NM. Rethinking aging. Growing old and living well in an overtreated society. UNC Press, 2011.