Medical Humanities Blog

Medical Humanities Lexicon: Clinical Gaze

Today's entry in the Medical Humanities Lexicon is the "clinical gaze."  While the concept is articulated in a number of sources, it is generally most associated with Michel Foucault in his tour de force, The Birth of the Clinic: An Archaeology of Medical Perception.

Understandably, the mere mention of a 'postmodern' French intellectual has a tendency to send people running.  But Foucault, as near as I can tell, is generally taken quite seriously among humanities scholars of medicine, even if neither his ideas nor his style are without critics.  In any case, The Birth of the Clinic is extremely important in thinking about health, illness, and the culture of biomedicine from a medical humanities perspective.

Medical Humanities Lexicon: The McKeown Thesis

Today's entry in the Medical Humanities Lexicon is "the McKeown Thesis."  The McKeown Thesis is an important and contentious theme in epidemiology, public health, demography, and the history of public health.  Thomas McKeown, physician and demographic historian, put forth a fairly startling argument in several articles published during the 1950s and the 1960s: the so-called epidemiologic (or health) transition from approximately 1700-present had little to do with public health and medical interventions, but was prompted by social and economic changes.

The epidemiologic transition remains a crucial subject of inquiry for all manner of scholars and stakeholders: why exactly did mortality rates decline so precipitously during this period? The answer to this question is actually crucial, for it promises to shed some important light on why populations grow healthier -- or less healthy -- over time.  This is in turn would obviously have significant impact on thinking about our current public health policies and priorities.

There are some controversial and some relatively uncontroversial aspects of the McKeown thesis.  Relatively uncontroversial is the notion that medical care and the misleadingly named "therapeutic revolution" of the 19th century had little substantive effect on mortality rates.  In the first place, mortality rates were already in decline by the mid-19th century, and, more importantly, there were no "effective"* chemotherapeutics until the advent of the sulfa drugs during the 1930s.  Accordingly, it is extremely unlikely that improvements in medical care had a substantial effect in reducing mortality and morbidity during the period under examination, or at least did not do so until the very tail of the period.

I am continually surprised by how the impact of this aspect of the McKeown thesis seems to be dramatically understated.  The conclusion, generally conceded by most stakeholders, is that there is significant reason for doubting that improvements in medical care and technical innovation has a substantial effect on population health over time.  Thus, even as sharp a commentator as Jon Cohn feels the need to (correctly, IMO) explain why a proposal for universal health care will not unduly depress innovation, without even mentioning that the evidence for a robust link between increased innovation and population health is weak.

Indeed, given that such innovation is a substantial driver of (1) hyperinflationary health costs (estimates go as high as 40% of the increase can be attributed to new techniques); (2) socioeconomic disparities; and (3) health disparities, there is a plausible argument that acute care, research, and technical innovations may actually worsen health outcomes in the long run.  Note, this is not to suggest that innovation, research, or acute care is undesirable or should be abandoned; this is a particularly egregious false choice fallacy.  Nevertheless, the health policy scholar or medical humanist familiar with the McKeown thesis has a sound basis for questioning the relative priority of expenditures on acute care and technical innovation.

The controversial aspect of the McKeown thesis is the idea that public health interventions are also not responsible for the epidemiologic transition.  McKeown contended that the improvements in population health from 1700-1950 was due to "improvements in overall standards of living, especially diet and nutritional status, resulting from better economic conditions. His historical analysis called into question the effectiveness of some of the most basic and widely applied techniques in the public health armamentarium, including sanitary reforms, vaccination, and quarantine" (Colgrove 2002).

Interestingly, the furor over the McKeown thesis did not truly ignite until 1976, when McKeown published two books on his theory: The Modern Rise of Population, and The Role of Medicine: Dream, Mirage, or Nemesis.  This prompted a number of responses.  Two of the most critical were a 1981 book entitled The Population History of England 1541-1871, and a 1988 article by Simon Szreter in the journal Social History of Medicine.  The book, published by a distinguished group of scholars named the Cambridge Group was utterly dismissive of the McKeown thesis, charging that his argument was riddled with inaccuracies and errors.

Szreter, who remains a vocal critic of the McKeown thesis, attacked McKeown's arguments on a number of levels, arguing that the thesis suffered from a serious conceptual inaccuracy by relying on a notion of "rising standards of living" that masked a number of social conditions affected by public health reform (Colgrove 2002).  Szreter also argued that McKeown's interpretation of the data relied on a number of technical errors, and, most important, "that McKeown had allowed his a priori assumptions about the limited value of medical intervention and the need for social reform to predetermine his analytic categories, thus biasing his interpretation of evidence" (ibid).

In any case, the debate over the McKeown thesis continues to rage across public health, epidemiology, demographics, history, and health policy.  And, I submit, the discourse is crucial to examining a question that ought to be fundamental for any medical humanist: what is it that causes (good or bad) health? Why do mortality and morbidity rates rise or fall over time?   How we answer these questions ought to have a profound impact on what public health policies and priorities we set, IMO.  Finally, the discourse over the McKeown thesis also implicates work on social epidemiology and the social determinants of health, especially inasmuch as this work is primarily concerned with articulating how social conditions produce health or its lack.

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Bibliography

James Colgrove, "The McKeown Thesis: A Historical Controversy and Its Enduring Influence," American Journal of Public Health 92, no. 5 (2002): 725-729.

Simon Szreter, "Rethinking McKeown: The Relationship Between Public Health and Social Change," American Journal of Public Health 92, no. 5 (2002): 722-725.

Simon Szreter, "The Importance of Social Intervention in Britain's Mortality Decline c. 1850-1914: A Reinterpretation of the Role of Public Health," Social History of Medicine 1 (1988): 1-38.

T. McKeown and R.G. Brown, "Medical Evidence Related to English Population Changes During the Eighteenth Century," Population Studies 9 (1955): 119-141.

T. McKeown and R.G. Record, "Reasons for the Decline in Mortality in England and Wales During the Nineteenth Century," Population Studies 16 (1962): 94-122.

Thomas McKeown, The Modern Rise of Population (New York: Academic Press, 1976).

Thomas McKeown, The Role of Medicine: Dream, Mirage, or Nemesis? (London: Nuffield Provincial Hospitals Trust, 1976).

E.A. Wrigley and R. Schofield, The Population History of England 1541-1871: A Reconstruction (Cambridge, UK: Cambridge University Press, 1981).

See also the Bibliography appended to the Lexicon entry on the Social Determinants of Health.

Medical Humanities Lexicon: Therapeutic Misconception

Today's long overdue entry in the Medical Humanities Lexicon is "therapeutic misconception."  This is a topic of particular interest of mine for a variety of reasons.  The phrase was, as far as I can tell, first used in 1982 by Paul Appelbaum et al., who along with Charles Lidz, has published some of the most important empirical studies of the phenomenon.  The therapeutic misconception refers to the general conflation of research with therapy.

Why are they distinct in some important senses? Why should they not be conflated?

Toward an Understanding of TCM, Part II

One thing I was surprised to learn in my amateur exploration of TCM is that it is not, in fact, traditional Chinese medicine. Perhaps we’re already a bit jaded when it comes to such nomenclature: the World Series in baseball is not truly global, and most of us have heard of the Peacekeeper Missile (now retired), collateral damage and pacification programs (these being instances of euphemisms as doublespeak).

In many not insignificant respects, TCM is decidedly modern, a selective appropriation of specific medical modalities mined from what is better termed Classical Chinese medicine (CCM). What was christened in the second half of the twentieth century as “TCM” involves the ideological legitimation (see below for the motley motivating interests) and selective use of classical Chinese diagnostic techniques and therapeutic regimens by the People’s Republic of China (PRC) under Mao Zedong (or Mao Tse-Tung for the older among us) in the late 1950s and early 1960s.

Medical Humanities Lexicon: Social Determinants of Health

Today's entry in the Lexicon is "Social Determinants of Health."  Perhaps the most basic way to introduce this topic is simply to ask, what causes health, or the lack thereof?

There are many possible answers to this question.  Perhaps, in the classical spirit, we might attempt to come out this question by assessing the negative -- what causes poor health? One obvious answer is "microorganisms" or other infectious agents.  Another, obviously topical response might be "poor access to care."  Smoking has long been linked to poor health, as has poor nutrition, substance abuse, and so on and so forth.

These answers all seem plausible, but a significant body of research suggests that they are rather inadequate to account for poor health, at least in the aggregate.  Why?

The short answer is that they are too far down the causal chain.  While it is accurate to say that substance abuse causes poor health, addressing the argument itself seems to require assessing why exactly some people, indeed, some societies, show dramatic levels of substance abuse.    Here, we finally come to the idea that social structures -- history, politics, culture -- exert at the highest level a profound influence on health.  It is analysis of these social structures that best explains prevalence patterns of substance abuse.  For example, can it truly be coincidence that indigenous populations on opposite sides of the globe display unbelievably high prevalence of substance abuse? Both Native Americans and Aborigines, victims of horrifying structural violence, to use Paul Farmer's term, have such prevalence.

Similarly, the insights of social epidemiologists like Marmot in the U.K., and Kawachi and Kennedy in the U.S., show that a relative socioeconomic gradient correlates robustly with health.  In English, this means simply that the higher your socioeconomic standard, the more healthy you are likely to be.  Because the gradient is relative, it means not just that the rich are healthier than the poor, but the really rich are healthier than the slightly less well-off, who in turn are healthier than the slightly less well-off, etc, etc.

Daniels, Kawachi, and Kennedy posit some causal pathways for the correlation, in particular noting that countries with significant investments in education for the population from a young age strongly predicts health.  In addition, they note that income inequality tends to undermine social cohesion, which in turn results in much lower political and civic participation, which tends to reinforce entrenched inequities.

There are further demonstrations that social factors are the most powerful determinants of health.  Some might object to the analysis thus far by arguing that drugs are incredibly important determinants of health.  To be sure, biologics and devices have an important role to play in care.  The assessment required here is one of relative priority -- what are the primary causal factors of population health? And on this question, there is significant reason to doubt that drugs and devices exert a prominent, widespread effect.

For example, we know quite well that chemotherapeutics had little to do with the dramatic health transition (assessed by reduction of mortality) between 1800 and 1940.  The reasons for the epidemiologic shift remain hotly disputed, but it is relatively clear that drugs were a negligible factor.  Moreover, a relatively reliable vaccine for smallpox was common knowledge since the late 18th century; yet this knowledge did not prevent significant smallpox epidemics throughout the 19th century.  We have extremely effective treatments for malaria; yet approximately 1 million people, most of them children, die from the illness every year in Africa.

Amartya Sen showed over 25 years ago that contrary to popular belief (then and now), physical conditions apparently did not cause famine.  His analysis definitively demonstrated that in regions with virtually identical climates and geographical factors (such as drought, flood, etc.), some regions prospered while others suffered greatly.  The difference, he identified, was the social and political structures, and in particular the government structures.  There was no lack of humanitarian aid and food in these regions; in some of them, human agency prevented them from reaching those who most needed it.

In any case, there is a great deal more that could be said about this, and, in point of fact, multiple books and articles have been written on the subject.  One immediate implication for U.S. culture is that the strident emphasis on individual responsibility for health may be somewhat misplaced.  This is not to suggest that such responsibility has no role in health, but simply that social structures may exert a significantly larger causal effect on health.

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Bibliography

Amartya Sen, An Essay on Entitlement and Deprivation (New York: Oxford University Press, 1981).

Norman Daniels, Bruce Kennedy, & Ichiro Kawachi, Is Inequality Bad for Our Health? (Boston: Beacon Press, 2000).

Social Determinants of Health, eds. Michael Marmot, Richard G. Wilkinson, 2d ed. (New York: Oxford University Press, 2005).

Paul Farmer, Pathologies of Power (Berkeley, CA: University of California Press, 2004).

The Social Medicine Reader, Vol II, eds. Gail E. Henderson et al., 2d. ed (Durham, NC: Duke University Press, 2005).

Medical Humanities Lexicon: Stigma

Today's entry in the Medical Humanities Lexicon is "Stigma."  I think stigma is a particularly important term for the medical humanities, relevant to various disciplines including narrative studies, disability studies, history of medicine and public health, health policy, bioethics, etc, etc.  While I have touched on the subject in several posts, I have not devoted an entry purely to "stigma," and the significance of the term for the medical humanities warrants such treatment.

What is stigma? The seminal analysis comes from sociologist Erving Goffman, who characterizes stigmatization as a social process consisting of two component parts: first, a marking out of a class of persons as different, and second, an establishment of deviance with the class.  That is to say, there is always a negative assessment with any kind of stigma, a notion of deviance and unacceptability.  This second aspect is particularly important because there is no inherent conceptual reason why difference must imply deviance.  It is entirely possible to accept differences in characteristics or preferences without thereby attaching negative assessments to those differences.  For example, I can accept that John prefers strawberry ice cream and Jane prefers chocolate ice cream without viewing that difference negatively.

However, assessments of deviance are not possible unless the particular subjects deemed to be deviant can be conceptually marked out and separated from the observer.  Thus the first element of stigma is a prerequisite for its occurrence, even while the second element (deviance) is what distinguishes stigma from classifications that strike many as mild if oversimplified heuristics.

Why is stigma particularly relevant to the medical humanities? There are many reasons.  First, as Drew Leder points out, the very experience of illness is exilic in nature; it frequently, if not always marks out the illness sufferer as different, from both the perspective of the sufferer and from caregivers and strangers, as well.  In a very real sense, then, the illness experience itself often if not always fulfills the first element of stigma because it marks out the illness sufferer in some meaningful ways.  This is not to suggest that the illness experience is necessarily solipsizing, because illness sufferers often band together to form communities.  But the point is that the need to do so is often fueled by a sense of alienation from forms of life that had previously felt wholly comfortable to the illness sufferer.

Second, and related, social responses to disease are, lamentably, all-too-frequently stigmatizing in nature.  The most obvious example of this is the AIDS epidemic, but such stigmatization so frequently accompanies infectious disease in particular, at least in Western history, that the narrative would become boring were it not so tragic.  From the massacres of Jews during the Black Death to the nativist movements of the 19th century (which often accused Irish immigrants of spreading cholera and typhoid fever, culminating in the incarceration of Mary Mallon) to the attitudes towards Andrew Speaker, the association is pervasive.

Why is stigma so intimately connected with illness and disability? There are many plausible answers to this question, but the one I find most compelling posits that we mark out illness sufferers as different out of a kind of existential fright.  Disease is threatening to us, as it reminds us of our own mortality (it should be easy to see why infectious disease is even more threatening).  This is partly why so many dislike or feel uncomfortable around hospitals, IMO, because it is associated so strongly for so many with disease and death.  We instinctively withdraw or recoil from illness sufferers out of this kind of existential fear.

This, so far as it goes, explains difference but not deviance.  Why is it so common, not just to mark out illness sufferers as different, but to mark them as deviant? In a prior Lexicon post on "theodicy" (relevant here), I proffered one of my favorite quotes from Nietzsche, which I deem of assistance in answering this question:

“[t]he meaninglessness of suffering, not suffering itself, was the curse that lay over mankind so far . . . .”

What marking the illness sufferer as deviant accomplishes is meaning-making.  Believing that disease and death are random and arbitrary strikes many as nihilistic and meaningless.  How can there be justice in a world where cherished persons are made to suffer and die for no reason whatsoever? As Harold Kushner puts it, why DO bad things happen to good people?

The need to find some kind of meaning in the face of illness, suffering, and death is inescapable, I think, for the vast majority of people.  One of the oldest and most effective meaning-making tropes, IMO, is to link the illness with desert.  This person is ill because of their conduct -- because they smoked, because they were intemperant, because they lived to close to power lines, because they ate too many hamburgers, because they engaged in promiscuous behavior, because they did not exercise enough, ad infinitum.

By seeing illness as a function of desert, meaning is found in the process of suffering.  Suffering and illness are not random and arbitrary; they can be traced to specific events and choices in people's lives.  The implication, of course, is that if "I" live my life correctly -- if I don't smoke, drink too much, live near power lines, eat too many hamburgers, engage in promiscuity, or avoid exercise, I can prevent disease and death.  Under this analysis, stigmatizing is a kind of social adaptation, a way of assuaging our existential fear in the face of disease and death.

In any case, this is an extremely crude sketch both of stigma in general, and of why such stigma seems so lamentably common in the face of disease and health care.  But the consequences of such stigma are nothing short of devastating, both on an individual and a social level.  The key for the medical humanist, then, is both to recognize stigma where it occurs, to formulate some understandings or at least some opinion about why any given instance of stigmatization is taking place, and then, IMO, to take remedial measures.  What such remedial measures might consist of is, unfortunately, a post for another day.

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Bibliography

Sontag, Susan.  Illness as Metaphor and AIDS and its Metaphors.  New York: Picador Press, 1989.

Nietzsche, Friedrich.  On the Geneology of Morals.  Translated by Walter Kauffman & RJ Hollingdale.  New York: Random House, 1989.

Leder, Drew.  "Illness and Exile: Sophocles' Philoctetes" Literature and Medicine Vol. 9 (1990): 1-11.

Goffman, Erving.  Stigma: Notes on the Management of Spoiled Identity.  New York: Simon & Schuster, 1963.

The Disability Studies Reader, ed. Lennard J. Davis.  New York: Routledge, 1997.

Alonza, A.A., and Reynolds, N.R., "Stigma, HIV and AIDS: An Exploration and Elaboration of a Stigma Trajectory," Social Science & Medicine Vol. 41, no. 3 (1995): 303-15.    

Medical Humanities Lexicon: Substituted Judgment

Today's entry in the Lexicon is "substituted judgment."  The phrase refers to one of the integral standards according to which surrogate decisions for incapacitated patients are judged.  The movement for advance directives legislation most closely tracked the seminal Quinlan decision of 1976, in which the Supreme Court of New Jersey ruled that Joseph Quinlan, Karen Ann Quinlan's guardian, had the right to refuse life-sustaining treatment ("LST") on her behalf.  In the fourteen years between Quinlan and the U.S. Supreme Court's decision of Cruzan, nearly every state enacted some kind of living will or advance directive statute.

Cruzan is often referred to as a "right to die" case, but in point of fact, such terminology is misleading.  The U.S. Supreme Court has never identified a constitutional right to die.  The state of Missouri had already provided that duly identified surrogates could refuse LST on behalf of the patient if they could show by clear and convincing evidence that the patient would not have wanted LST under the circumstances.  The Supreme Court merely held in Cruzan that Missouri's statutory mechanism was constitutional -- i.e., that states could permit surrogates to seek withdrawal of LST on behalf of patients and that states could regulate the procedures for doing so.  The Court did not hold that the state was required under the Constitution to enact such permissions.

Of course, it is important to note that when the term "substituted judgment" is mentioned, the issue of surrogacy is necessarily implicated.  There is simply no fighting issue if an adult, capacitated patient refuses or seeks withdrawal of LST.  Though a constitutional right to die remains unsettled, the notion that an adult, competent patient retains a broad right to refuse virtually any intervention is beyond dispute in all but the most extreme cases.

The issue obviously becomes more difficult when the patient is unable to communicate his/her wishes, and surrogates must speak for them.  A surrogate may be elected by the patient in the form of an advance directive instrument (often termed durable or medical power of attorney), or, may be appointed according to a statutorily-defined hierarchy.  Virtually every state advance directives act contains a hierarchy for selecting surrogates if the patient has made no prior election.  Spouses typically appear first on the list, usually followed by adult children of the patient and surviving parents.

The notion of surrogates speaking for the patient is important for a variety of reasons.  First, the notion of voice is absolutely crucial to medical humanities scholarship in general.  The art of rhetoric is itself committed to the importance of knowing one's audience, of specifically tailoring one's voice to suit a particular communicative task.  For decades, pain scholars have emphasized how persistent, unrelenting pain robs a person of his/her voice.  Narrative studies focus on disentangling the particular voice of the author and the speaker (not the same!), and pathographies emphasize the voice of the illness sufferer.  Critical views of the history of medicine and public health also study the voices, both within history itself and in a meta sense, in terms of those who are compiling the history.  Feminist, race, and disability scholars often attempt to bring previously marginalized voices into the center of public discourse, and theorists sympathetic to Marxism focus on the voices amplified and suppressed by the forces of capitalism and labor.

Second, the entire point of surrogates in these contexts, and of advance directives legislation, is to empower the patient's voice even when it cannot be heard.  As the Supreme Court memorialized it in Cruzan, the ideal for the surrogate is to capture the decision that would result if the patient suddenly experienced a brief interval of capacity and could tell us their treatment preferences prior to slipping back into incapacity.  Contrary to popular belief, then, the well-known best interests standard is not the preferred standard for assessing surrogate decision-making, for the reason that the law generally protects a person's right to make medical decisions that seem contrary to their own best interests.  Even if the care team, the institution, and, the patient's family all think Treatment X is in the patient's best interests, the adult capacitated patient retains the legal (and, so we think, ethical) authority to refuse Treatment X.

This means that surrogate authority is circumscribed by the patient's known preferences, or, if unknown, the best assessment of what the patient would have wanted based on the patient's values, lifestyle, etc.  The surrogate is supposed to substitute the assessment of the patient's judgment for the surrogate's own judgment; hence the name "substituted judgment."  If there is reason to believe that a particular surrogate treatment decision is contrary to the judgment the patient would have arrived, then honoring such a decision is, if not legally, at least ethically problematic.  (Note: This is not to ignore or deny the practical problems that might obtain any effort to differ with a surrogate decision in a difficult end-of-life scenario, but is meant simply to identify some ethical problems that may appear in some such situations).

Of course, there are myriad problems both with the "substituted judgment" standard and with advance directives in general, some of which have been mentioned on this blog.  I will save a discussion of these problems for a future post, but for those who are interested in some of these problems here, I recommend the Gill article and the Dresser article contained in the short bibliography below.

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Bibliography

In re Quinlan, 355 A.2d 647 (N.J. 1976).

Cruzan v. Director, Missouri Dep't of Health, 497 U.S. 261 (1990).

Kathy L. Cerminara and Alan Meisel, The Right to Die: The Law of End-of-Life Decision Making, 3d ed. (New York: Aspen Publishers, 2004).

D.I. Shalowitz, E Garrett-Mayer, and D. Wendler, "The Accuracy of Surrogate Decision-Makers: A Systemic Review," Archives of Internal Medicine 166, no. 5 (2006): 493-497.

Louise Harmon, Falling Off the Vine: Legal Fictions and the Doctrine of Substituted Judgment, 100 Yale L.J. 1 (1990).

Carol Gill, "Depolarizing and Complicating the Ethics of Treatment Decision Making in Brain Injury: A Disability Rights Response to Nelson and Frader," Journal of Clinical Ethics 15 (2004): 277.

Rebecca Dresser, Precommitment: A Misguided Strategy for Securing Death with Dignity, 81 Tex. L. Rev. 1823 (2003).

Medical Humanities Lexicon: Social Construction of Disease

Today's entry in the Lexicon is the social construction of disease.  Readers familiar with the Lexicon entries on medicalization and the social model of disability will find much overlapping conceptual terrain.

What is disease? What is a disease? One might surmise that these are easy questions.  Take cholera, to use an important disease in the history of public health.  What is the disease of cholera? An obvious answer is "the vibrio cholerae bacillus."  But vibrio is the name of the bacterium that causes the disease of cholera.  The premise that vibrio is a necessary condition for cholera does not necessarily imply that the disease of cholera itself literally is the condition.  To argue this would be to challenge the notion of causal sequelae itself, to conflate what we ordinarily conceive of as the relation of cause (vibrio) and effect (cholera).  The fact that some who carry vibrio bacteria do not develop symptoms of cholera is further proof of the existence of some kind of meaningful distinction between the microorganismal agent and the phenomenon of disease itself.

Well, if cholera is not simply vibrio, then what is the disease of cholera? Perhaps it is the symptoms of cholera.  Is the notorious rice-water diarrhea caused by toxins produced by vibrio bacteria the disease of cholera? But to argue this is to make the classic mistake of conflating property with definition (those able readers already doubting the essentialist notion of a "definition" of disease needs be patient -- I'm getting there).  That is, to say that water has the property of wetness is assuredly not to say that water is defined by wetness.  The symptoms or properties of cholera are not equivalent to the definition of cholera.  Even if we are (rightly) suspicious of the notion of a definition of the disease of cholera, it certainly doesn't seem valid to treat the properties of the disease as their definition.

This is a blog post, not an essay, so I will unfortunately suspend the thought experiment right there.  Hopefully, even this most cursory of examinations should demonstrate that defining disease is much more difficult than might appear at first blush.  More specifically, one can already see significant problems with defining disease solely in terms of biology.  Even a superficial look shows that disease is experienced by people, and people are social creatures, enmeshed in a variety of social constructs and contexts -- family, culture, spirituality, occupation, and so on and so forth.  Even if we could define disease solely in terms of its biology, it seems indisputable that we experience disease as social beings.  And even if there is an essential definition of disease, the phenomenon of disease cannot reasonably be said to be purely biological.  Disease, in other words, is a social phenomenon.  It is, in part, socially constructed. 

Numerous theorists -- chiefly but not exclusively social scientists (historians, anthropologists, sociologists, psychologists, etc) have begun to take as a point of departure that disease is in part socially constructed.  This does not necessarily imply that disease is not real.  Many commentators (Rosenberg, Latour, Kuhn, depending on how he is interpreted) argue both that the phenomenon of disease is socially constructed and that it is nevertheless real, and there are facts.  (These are, naturally, not uncontroverted claims, but I do not think these claims are logically inconsistent, at least).  The basic argument itself is simply that how individuals and communities experience a disease is affected by their weltanschauung, how they frame and view the world.

Rosenberg's Cholera Years is a classic demonstration of this, and Johnson's more recent contribution (the Ghost Map) makes a similar point in different ways.  Briefly, prior to the germ theory, the prevailing Western conception of disease and etiology was based on the miasmatic theory, which linked disease to filth.  Given the changing demographics, particularly in the U.S., throughout the middle and late decades of the 19th century, it is unsurprising that many of the immigrant communities were closely linked with the disease.  It did not help that the conditions of the Industrial Revolution engendered dangerous, dirty occupational activity, nor that many immigrants were poor and did live in difficult, sometimes squalid conditions.

The miasmatic theory was engaged, in a dialectical sense, with different and varied social contexts, ideas, and conditions.  The age-old connection between sin and suffering is another highly significant social influence in the constellation of cholera in the 19th century.

A more recent, and perhaps familiar example of the social construction of disease is AIDS.  Even our name of the disease demonstrates the fallacy of biological reductionism (because HIV is to AIDS as vibrio is to cholera).  Whatever one's political outlook, it is difficult to deny that it took considerable time for AIDS research to receive significant funding.  Though correlation is not causation, more than a few have noted that the period of comparatively lower funding corresponds (at least chronologically) with the period when AIDS was conceived of primarily as a disease of gay men and drug abusers.

Sometimes, elements of the political economy (itself an obviously social phenomenon) can even affect the existence of disease.  Consider the recent discourse of whether to eradicate the remaining stocks of smallpox virus.  Concerns of bioterror and weaponized smallpox provided a strong incentive for humans to refrain from "eradicating" disease.  If disease is in part socially constructed, it would seem to be advisable to analyze what it would mean to eradicate a disease.

However, there is heated debate over how far the proposition that the phenomenon of disease is in part socially constructed extends.  It would seem to require a kind of radical skepticism* to deny that microorganisms play a causal role in infectious disease.  As mentioned above, many notable commentators are realists about disease, i.e., they are committed to a belief about the biological influences on disease (and to the validity of truth conditions to notions of biological facts).  To argue that disease is socially constructed is not equivalent to saying that disease is nothing but socially constructed.

The contours of disease are hardly settled, but the discourse itself is important for the medical humanist, IMO.

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Bibliography:

Rosenberg, Charles E.  The Cholera Years.  Chicago: University of Chicago Press, 1987.  First Published in 1962.

Rosenberg, Charles E.  Explaining Epidemics and Other Studies in the History of Medicine.  Cambridge: Cambridge University Press, 1992.

Latour, Bruno.  The Pasteurization of France.  Translated by Alan Sheridan and John Law.  Cambridge, MA: Harvard University Press, 1988.

Grmek, Mirko.  History of AIDS: Emergence and Origin of a Modern Pandemic.  Translated by Russell C. Maulitz and Jacalyn Duffin.  Princeton: Princeton University Press, 1990.

Leavitt, Judith Walzer.  Typhoid Mary: Captive to the Public's Health.  Boston: Beacon Press, 1996.

Duffin, Jaclyn.  Lovers and Livers: Disease Concepts in History.  Toronto: University of Toronto Press, 2005.

Johnson, Steven.  The Ghost Map.  New York: Riverhead Books, 2006. 

Medical Humanities Lexicon: Theodicy

Today's entry in the Medical Humanities Lexicon is "theodicy."

I believe in the sun even when it is not shining.

I believe in love even when feeling it not.

I believe in God even when he was silent.

This refrain was inscribed on the wall of a cellar in Cologne, Germany where Jews hid from the Nazis.  It was found by Allied troops in 1945.  Aside from its stark beauty, it neatly encapsulates the problem of theodicy, which is roughly defined as the question of how God can be perceived as good, right, or just, given the existence of suffering and evil in the world.

The problem arises as a dilemma in the technical sense.  Given the phenomena of evil, there are apparently two possibilities: either God is incapable of preventing the evil in question, or God is capable of preventing that evil but chooses not to do so.  The first option seems unsatisfying because it denies omnipotence to God, which is deeply problematic at least for many who ascribe Judeo-Christian beliefs.  The second option is arguably worse because it problematizes the notion of a just, benevolent God; how could such a God choose to permit such evil to occur? How could God be silent in the face of such suffering?

The problem of theodicy, which is sometimes referred to as the ontological problem of evil, is at least as old in Judeo-Christian traditions as the Book of Job itself, which is a marvelous albeit deeply troubling work.  To provide a basic narrative, Job is a righteous person who has generally enjoyed good health and prosperity.  Suddenly, and for no apparent reason, a number of horrific calamities befall him.  He loses all of his money, his children die one by one, he becomes afflicted with a number of gruesome illnesses, etc.  He naturally begins to wonder why his life has taken such a sharp turn, especially given that he has generally lived a life of piety.  This last point is important, for it is no answer to Job's problems to assert that his current misfortunes are his just desert, for there is no suggestion anywhere in the text that Job has perpetrated any works that would merit such punishment.

Job's problem, of course, is the problem of theodicy: the innocent suffer.  How can God justify it? How can God be both all-powerful and benevolent if the innocent suffer? The remainder of the text consists generally of a dialogue between Job and his peers, who assert the point I have already suggested is unpersuasive: Job's misfortunes must be linked to his own sins.  The idea that suffering is linked to personal sin is pervasive, especially in Judeo-Christian morality, and, in On the Geneology of Morals, Nietzsche provides the most eloquent explanation for why this idea maintains such currency: “[t]he meaninglessness of suffering, not suffering itself, was the curse that lay over mankind so far . . . .” (162) The sin-suffering narrative is so powerful precisely because it engenders meaning in the face of suffering, which may be more tolerable than the idea that suffering is entirely arbitrary:

suffering was interpreted; the tremendous void seemed to have been filled; the door was closed to any kind of suicidal nihilism . . . it placed all suffering in the perspective of guilt.  But all this notwithstanding -- man was saved thereby, he possessed a meaning; he was henceforth no longer like a leaf in the wind.

Ibid.

Job, however, rejects this narrative.  He insists that he is blameless, though his peers repeatedly return to the sin-suffering link both to explain Job's misfortunes and to preserve the notions of an omnipotent benevolent God.  In chapter 21 of the Book, Job moves to preseve the notion of a just God at the expense of the notion of an omnipotent God.  He argues not that God rules the world unjustly, but that he does not "rule" it all.  In a conception that presages the Deist ethos, the world just runs on without divine control.

God eventually appears, but one of the most fascinating puzzles of the entire Book is that God never answers the problem of theodicy.  Rather, God points out the immense chasm separating human and divine knowledge, and implies that he is uniquely concerned with the plight of humanity.  But he never provides a resolution to the dilemma.  Interestingly, Job is utterly satisfied with this response.  Some exegetes have interpreted this climax as signfying Job's relief at the presence of God.  God is no longer silent, to return to our original quotation.  His presence alone soothes Job, even if he supplies no answer to the problem that has been causing Job such anguish.

The paradox here is rather profound.  While Job may be soothed by being close to God, he could not be farther from divine understanding, as God himself reminds Job.  Many Jewish thinkers have attempted to resolve this paradox in one of two principal ways: (1) tracking Job's reaction, some commentators, most notably Maimonides have accepted the epistemic gap between human and divine comprehension, but have argued that suffering may be transcended through closer relation to the divine presence itself; or (2) some commentators, especially 20th century thinkers, have adopted Job's earlier tack, and begun to reject the notion of an omnipotent deity.

Maimonides, roughly contemporary of Aquinas, was arguably just as enamored with the concept of right reason as was the latter.  He suggested that through our intellect we could transcend our material existence and the suffering that accompanied it and move closer to God.  Though I admit to finding the transcendentalist response deeply unsatisfying, one arguably redeeming feature of the Maimonidean version is that it places the onus on humans to work out the problem of theodicy.  According to Maimonides, we cannot expect God to solve this problem for us.  It is humans who must grapple with it.  This response to me sounds remarkably familiar to one of my favorite essays ever, one which holds great personal significance for me, Camus' Myth of Sisyphus.  It is Sisyphus who choose his own fate by pushing the boulder up the hill.  Il faut imaginer Sisyphe heureux.

While transcendentalism maintained a powerful hold in Judeo-Christian thought for centuries following Maimonides, it became increasingly difficult to stomach after the Shoah.  Richard Rubenstein argues that "[t]he fact of Auschwitz rules out such ideas forever" (Leaman 187).  Moreover, the notion of a God who is utterly detached from the suffering of his children is deeply problematic for a tradition built upon the negation of that notion.  Harold Kushner, in his well-known account of his attempts to make meaning of the death of his son, escapes the theodic dilemma by rejecting God's omnipotence.  He observes that he can worship a benevolent but not all-powerful God, but that he cannot worship an omnipotent being who allows the innocent to suffer so.  Elie Wiesel adopts an entirely pragmatic approach: to abandon God would be to grant success to the hopes of the Nazis in seeking to exterminate a Jewish way of living and thinking.  Thus, belief in God is a pragmatic course, though he does not offer any resolution to the problem of theodicy itself.

Finally, Leibniz proposed that this world, even with its significant evils, is the best of all possible worlds.  Under this analysis, all actual evils are essential ingredients in the divine plan in which this world remains the best of all possible worlds.  To omit these evils would wreck the entire design itself.  Numerous commentators have criticized this proposal on many different grounds, the most obvious of which is that it seems to rely on a brazenly consequentialist ethic.

It should take no great exercise of moral imagination to see the connection of the problem of theodicy to the medical humanities.  The question of how an omnipotent, benevolent God can permit the innocent to suffer remains a profound problem for many, both for providers and health care professionals, and for patients and caregivers (each of whom may well take on both kinds of roles in their lives on multiple occasions).  Of course, the problem of theodicy is no problem at all for atheists, and there are certainly non-Western belief systems which are untroubled by the problem because the relevant deity or deities is not deemed omnipotent to begin with.

Nevertheless, I submit it is safe to suggest that there are many participants in medical practice for whom the problem of theodicy is profound and agonizing.  Even outside of a Western religious paradigm, Eric Cassell, one of the chief authorities on suffering, states that "[t]ranscendence is probably the most powerful way in which one is restored to wholeness after an injury to personhood" (45).

And even for those untroubled by the problem of theodicy, the sin-suffering narrative has demonstable clinical effects.  Some patients, for example, do not request adequate pain management because they feel that the pain is their just desert for the sins they have committed.  Through their suffering, they hope to expiate their sins.  Susan Sontag's Illness as Metaphor highlights some of the ways in which the suffering of cancer patients is linked to sin.  Saul Brody's seminal work on the history of leprosy shows an even closer link between illness, suffering, and sin.  Arguably, part of the impetus for such a narrative is that it resolves the problem of theodicy.  If suffering is linked to merit, or lack thereof, the notion of an omnipotent, benevolent God is left untroubled.

Thoughts?

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Bibliography

Mitchell, Stephen, trans. The Book of Job.  New York: HarperPerennial Press, 1987.

The Cambridge Dictionary of Philosophy, 2d ed., s.v., "Theodicy."

Leaman, Oliver.  Evil and Suffering in Jewish Philosophy.  Cambridge: Cambridge University Press, 1997.

Freeman, David L., Abrams, Judith Z., eds.  Illness and Health in the Jewish Tradition.  Philadelphia: The Jewish Publication Society, 1999.

Kinzbrunner, Barry.  "Jewish Medical Ethics and End-of-Life Care."  Journal of Palliative Medicine 7, no. 4 (2004): 567.

Barilan, Y. Michael.  "Revisiting the Problem of Jewish Bioethics: The Case of Terminal Care." Journal of the Kennedy Institute of Ethics 13, no. 2 (2003): 147.

Cassell, Eric J.  The Nature of Suffering and the Goals of Medicine.  Oxford: Oxford University Press, 1991.

Kushner, Harold.  When Bad Things Happen to Good People.  New York: Avon Press, 1981.

Nietzsche, Friedrich.  On the Geneology of Morals.  Translated by Walter Kauffman & RJ Hollingdale.  New York: Random House, 1989.

Kapeli, Silvia.  "Between Suffering and Redemption: Religious Motives in Jewish and Christian Cancer Patients' Coping."  Scandinavian Journal of Caring Sciences 14, no. 2 (2000): 85.

Gunderman, Richard B.  "Medicine and the Question of Suffering."  Second Opinion 14, no. 1 (1990): 16.

Rahula, Walpola.  What the Buddha Taught.  New York: Grove Press, 1974.

Sontag, Susan.  Illness as Metaphor and AIDS and its Metaphors.  New York: Picador Press, 1989.

Brody, Saul.  The Disease of the Soul: Leprosy in Medieval Literature.  Ithaca, NY: Cornell University Press, 1974.   

Hegelian Dialectic

Today's entry in the Lexicon is "Hegelian dialectic."  Perhaps I am mistaken about this, but it seems to me like Hegel is somewhat less fashionable these days than he might have once been (perhaps this is because phenomenology is somewhat less dominant in Western philosophy than it was fifty years ago).  Regardless, I think his notion of dialectic is extremely important to any kind of basic understanding of history, and I also think it coheres very nicely with some scholars' insistence on historicizing culture and discourse (Taylor and Toulmin immediately leap to mind, see below).

What is the Hegelian dialectic? As I understand it, it describes a certain model of history, a way of thinking about cultural, intellectual, economic, and social history.  It can be described quite succintly.  In any given society, there are sets of ideas, conditions, and values that enjoy a kind of establishment; they are more or less accepted.  This is called the "thesis."  Eventually, these accepted ideas, conditions, and values are challenged by an opposing set of ideas, conditions, and values, called the "antithesis."  From the clash of these forces and influences, an amalgam is formed, called the "synthesis."  Thus, the Hegelian dialectic is "thesis" + "antithesis" yields "synthesis."

It is crucial to note that the dialectic (being a dialectic) is iterative.  The process continues to repeat itself, with new syntheses eventually concreting and becoming established theses.  In addition, one need not oversimplify -- at any one time, there can be (and likely are) multiple theses interacting with multiple antithesis which informs and constructs multiple syntheses.  Part of the reason the Hegelian dialectic is important is its dynamism, IMO. 

Finally, a caveat: Hegel linked his model of history to his belief in the inevitable progress of man, that through iterations of the dialectic humanity would continue to reach higher achievements.  I think it is important to observe that the significance of his dialectic is not contingent on the merits of the belief in the inevitable progress of man.  That is, it is entirely possible to see the dialectic as a useful prism for perceiving all manner of aspects about history without maintaining that iterations of the dialectic will necessarily lead to human or social progress.

Why should the Hegelian dialectic matter to the medical humanist? For one, it implies a point articulated by many contemporary scholars, that intellectual movements and traditions must be historicized -- they must be understood in context of the ideas and conditions out of which they arose (and, pace Hegel, against which such ideas and conditions were opposed or were used to challenge).  In his classic essay "Two Theories of Modernity," Taylor warns against viewing cultural and intellectual conceptual schemes as acultural and ahistorical.  A peculiarly modern consciousness was not simply an inevitable result of progress and natural science -- it must be seen in light of the particular ideas and material conditions out of which it arose.  It must be contextualized and historicized.

Contextualizing and historicizing modernity is Toulmin's project in Cosmopolis, as he explains some of the material conditions of the 17th century that resulted in thinkers like Montaigne and Erasmus on the one hand, and Descartes, Galileo, and Bacon on the other, adopting wildly divergent ways of conceiving the world.

The point, as I see it, is that understanding the modern intellectual tradition in the West seems to require an understanding of past theses, antitheses, and syntheses that inform and construct that tradition.  Thus contextualized, some important pieces of the intellectual and cultural histories of modernity fall into place.  The metaphor I like to use to describe this phenomenon is that of flour and eggs in finished cake -- you may not see them, but they surely construct the perceptible product.  They are in every bite, and understanding the cake isn't really possible without understanding the dynamic interactions by which the flour and eggs are baked into the cake.

Thus, understanding the physician-patient relationship requires an understanding of the dialectical roots of the relationship -- where it come from, how it evolved, etc. -- in other words, an understanding of some of the theses, antitheses, and syntheses that inform and construct the current tradition(s).  Understanding, to use Shai Lavi's recent book, current attitudes and practices towards euthanasia and dying in the U.S. requires analysis or at least cognizance of some of the dialectical attitudes and practices out of which our current practices and attitudes arise.  It is no accident, then, that Lavi begins his analysis of modern attitudes in the 19th century.  To understand the Hegelian dialectic is, IMO, to understand the importance of contextualizing and historicizing practices.

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Bibliography

Charles Taylor, "Two Theories of Modernity," 25, no. 2, Hastings Center Report (1995): 24-33.

Stephen Toulmin, Cosmopolis: The Hidden Agenda of Modernity (New York: University of Chicago Press, 1990).

J.M.E. McTaggart, Studies in the Hegelian Dialectic (1896).

Charles Taylor, Hegel (Cambridge: Cambridge University Press, 1977).

Charles Taylor, Hegel and Modern Society (Cambridge: Cambridge University Press, 1979).

Hans-Georg Gadamer, Hegel's Dialectic: Five Hermeneutical Studies, trans. P. Christopher Smith, (New Haven: Yale University Press, 1982).

The Hegel Society of America.