Medical Humanities Blog

On the Very Idea of a Tight Connection Between Genetics & Population Health

One of the underlying themes I return to frequently on Medical Humanities Blog is whether genetics at the present has a pronounced effect on population health.  This empirical question is important to a normative inquiry that I am most interested in, regarding the priority to which we should order goals as they relate to health.  If we posit, for example, that compressing certain health inequities is a normative goal, the empirical question of which policies and practices we are most justified in believing will satisfy the criterion turns out to be critically important.  This follows partly from Deborah Stone's observation that policy is inevitably contested space, and there are always opportunity and switching costs that must be expended on meeting any policy objective, even if there is no outright opposition to the putative objective.  One obvious example of an empirical proposition which has important consequences for a prioritarian assessment of how best to allocate scarce resources to population health objectives is Sir Geoffrey Rose's prevention paradox, which Peter Allebeck nicely explains here:

The key messages of Geoffrey Rose may be summarized as follows: the distribution of risk levels for major determinants of disease follows a continuum in which the high-risk persons are at the extreme end. A large number of persons with moderately increased risk levels contribute more cases than a small number with extreme risk levels. Thus, interventions targeting the general population, aiming at shifting the risk curve to the left, are more effective than interventions targeting high-risk groups. This latter is called the prevention paradox, since it is not the individuals with moderately elevated risk that have the greatest benefit from such interventions.

The paradox consists of the fact that the least advantaged here -- the groups who tend to be at highest levels of risk -- seems to command normative priority, and yet Rose's analysis suggests that doing so will have a lesser impact on population health than interventions targeted at the general population (and hence the population of less than highest-risk).  So there is an argument from a population health perspective for directing more resources to the general population than the most high-risk, who tend to be those populations suffering from the most deprivation. 

This is not to be mistaken for the naturalistic fallacy.  What we ought to do certainly does not follow from descriptive claims, even powerful ones like those developed by the likes of Geoffrey Rose and, e.g., Michael Marmot.  The metaethical point here is simply that the "is" informs (but never determines) the "ought," which ought to be entirely uncontroversial, in my mind.  (Humanists like Montaigne certainly thought so!). 

My argument, based in part on arguments made by Richard Lewontin, and Claudia Chaufan (and also influenced strongly by Evelyn Fox Keller's framework for thinking about genes and metaphors), is that the best evidence suggests that the scientific practice of genetics in its current state has only a weak connection with population health.  The argument is even sounder when applied to populations in the developed world, who have even less chance to benefit in the reasonably foreseeable future from developments in the genetic sciences.

None of this supports an argument that we ought not study genetics.  But if there is reason to believe that the praxis of genetic science has only an attenuated connection to population health, one which is in the reasonably foreseeable future not likely to compress health inequities or affect the structural foundations of health, the pressing normative question becomes why is such significant social and economic capital being devoted to the praxis of genetic science? (I assume without argument that my empirical claim here, that we spend comparatively significant amounts of money on genetics in comparison to, say, capital expended on ameliorating the social determinants of health.  If able readers dispute this assumption, they are welcome to respond in the comments).

All of this is a buildup to an interesting article authored by Nicholas Wade in the New York Times entitled A Decade Later, Genetic Map Yields Few New Cures.  Wade writes 

Ten years after President Bill Clinton announced that the first draft of the human genome was complete, medicine has yet to see any large part of the promised benefits.

A nice, direct lede.  The entire article is worth reading in full, and I won't excerpt it much here save to note that it is reasonably well-written, and is quite relevant to the arguments discussed above.  I was perhaps most struck by the quote from Harold Varmus, who is both a Nobel laureate and a former director of the NIH:

"Genomics is a way to do science, not medicine."

This is an intriguing distinction, and seems salient to the empirical question identified above as most interesting to me: the connection, in the reasonably foreseeable future between genetic research and population health (the irreducibly speculative nature of the claims of a powerful connection at some time t in the future is epistemically shaky, and the shakiness is itself an important criterion for evaluating the weight of the claim).

Thoughts?

On Conceptions of Prevention (Medical Humanities Lexicon)

Several of the listserves I participate in have linked to Gilbert Welch's article in the NY Times asserting that prevention is not a cure-all.  Countering both presidential candidates' assertions that "preventive medicine" is needed to improve population health, Welch argues that this is a myth:

The term “preventive medicine” no longer means what it used to: keeping people well by promoting healthy habits, like exercising, eating a balanced diet and not smoking. To their credit, both candidates ardently support that approach.

But the medical model for prevention has become less about health promotion and more about early diagnosis. Both candidates appear to have bought into it: Mr. Obama encourages annual checkups and screening, Mr. McCain early testing and screening.

It boils down to encouraging the well to have themselves tested to make sure they are not sick. And that approach doesn’t save money; it costs money.

Readers of this blog may or may not be surprised to hear that I agree with Welch.  But this hardly undermines the case for prevention, because the kind of prevention I have been urging repeatedly on this blog is not "preventive medicine."  I explained my argument on the Spirit of 1848 listserv, which I repost here:

"I am somewhat partial to the argument that Barbara Starfield et al., among others, have raised regarding the transmogrification of prevention from its public health roots to a more acute care model, in the sense of "preventive medicine." Of course, there is nothing wrong with preventive medicine as far as it goes, but the SDOH evidence base makes quite clear that the merits of the prevention addressed therein revolve around a different concept of prevention, one that emphasizes social policy extremely early in the lifespan, and even well before the lifespan (i.e., prenatal care, housing for putative parents, etc).

One of the problems with the political discussion on prevention is that it almost exclusively focuses on the newer, more acute care model. This does not really effectively tie into the robust evidence on SDOH in context of the public health, social model of prevention that has much older roots and
is based on more compelling evidence, in my view. Thus Starfield et al. argue that we need a concept of prevention based on population health rather than the focus on the individual risk factors that dominate preventive medicine today.

In addition, the political discourse on prevention irritates me insofar as it spends virtually all of its time discussing cost, and very little discussing the SDOH evidence base demonstrating that, due to the prevention paradox, public health prevention may not save money, but we have every reason
to believe it will dramatically improve population health, ameliorate disparities, etc."

Thus, the call for prevention is entirely evidence-based, and desperately needed, but only if we haven't already assumed that prevention is a function of the acute care medical model.  The kind of prevention that, based on the evidence, we have every reason to believe is desperately needed, is a model rooted in public health and social policy, not one premised on screening.

(Because this post assesses conceptions of prevention relevant to the medical humanities, I'm going to file it as a Medical Humanities Lexicon entry.  I will try to update this post with some additional sources in the near future).

UPDATE 10.16.08: Those who chanced upon this post via Health Wonk Review might be interested in reading a brief response to Joe Paduda's assessment of this post.

Medical Humanities Lexicon: Fact-Value Problem

Sadly, it has been quite awhile since we produced an installment of the Lexicon.  There are myriad reasons for this, but I do admit to a failure of imagination in some sense.  Please, noble readers, do not hesitate to suggest suitable topics for consideration in a future Lexicon!

Today's entry is the fact-value problem, which is perhaps more a genuine philosophical problem than a object of inquiry within the medical humanities.  Yet it is difficult for me to imagine that any serious student or scholar of the medical humanities could be unaware of the implications of the fact-value problem in thinking about medicine, health, and illness.

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).