Medical Humanities Blog

Narrative Matters

Fitzhugh Mullan, one of the editors of the Narrative Matters feature in Health Affairs, directs us to a new narrative written by geriatrician Jerry Winakur.  (For those unfamiliar with the feature, it demonstrates the significance of narrative to health policy, and many of the narratives were compiled in the recent anthology, Narrative Matters: The Power of the Personal Essay in Health Policy).  The essay is available free in the Nov. 2007 issue of Health Affairs.  Recommended.

On False Hope

I recently learned of the publication of a book entitled False Hope: Bone Marrow Transplantation for Breast Cancer.  Oxford Press published it in 2007, and it is authored by Richard A. Rettig, Peter D. Jacobson, Cynthia M. Farquar, and Wade M. Aubry.  Here is the blurb:

In the late 1980s, a promising new treatment for breast cancer emerged: high-dose chemotherapy with autologous bone marrow transplantation or HDC/ABMT. By the 1990s, it had burst upon the oncology scene and disseminated rapidly before having been carefully evaluated. By the time published studies showed that the procedure was ineffective, more than 30,000 women had received the treatment, shortening their lives and adding to their suffering. This book tells of the rise and demise of HDC/ABMT for metastatic and early stage breast cancer, and fully explores the story's implications, which go well beyond the immediate procedure, and beyond breast cancer, to how we in the United States evaluate other medical procedures, especially life-saving ones. It details how the factors that drove clinical use--patient demand, physician enthusiasm, media reporting, litigation, economic exploitation, and legislative and administrative mandates--converged to propel the procedure forward despite a lack of proven clinical effectiveness. It also analyzes the limited effect of the technology assessments and randomized clinical trials that evaluated the procedure and the ramifications of this flawed system on healthcare today. Sections of the book consider the initial conditions surrounding the emergence of the new breast cancer treatment, the drivers of clinical use, and the struggle for evidence-based medicine. A concluding section considers the significance of the story for our healthcare system.

I have both mentioned this narrative on MH Blog as well as written on it, and this book, which I have just ordered, promises to be an important contribution.  Particularly important, this narrative invalidates the oft-heard contention that terminally ill patients should be given unfettered access to such experimental protocols because they have nothing to lose.  This is a technically invalid argument.  There are legitimate arguments in favor of granting such patients access to experimental protocols -- the heart of the Abigail Alliance case -- but the notion that the patients "have nothing to lose" is not one of them.  Such patients have a very great deal to lose.  Their lives could be shortened, which would seem a particularly cruel result for a terminally ill patient who presumably values greatly the time left to them.  In addition, such patients could suffer terribly, as many who underwent HDT/ABMT did (it is a ghastly procedure with significant mortality risks).

The point is that in the discourse over whether terminally ill patients should be granted access to experimental protocols -- and who should pay for them -- attention should be given to the history of HDT/ABMT for illness sufferers with advanced breast cancer, to demonstrate the fallacy of maintaining that the illness sufferers have nothing to lose.  Whatever the arguments in favor of such access -- and there are formidable arguments among them -- this is not one of them.  Finally, the story also demonstrates the power and scope of the therapeutic misconception, which is also at the heart of the Abigail Alliance litigation.

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.

Provocative Questions

The latest issue of The Atlantic (December 2007) magazine has a provocative article by Shannon Brownlee exploring the question of whether or not there is a pressing need to train more doctors in light of some well known demographic trends. The Association of American Medical Colleges (AAMC) for some time has been concerned that there may be a glut of physicians in this country but has now abruptly reversed itself, contending "that we’ll be at least 100,000 doctors short by 2025 unless we hurry up and train more." Brownlee argues that this alarmist prediction is based on two rather weak if not untenable assumptions. Although only available online to subscribers at The Atlantic's website, you can read her critique of these assumptions here. Brownlee also has a book out related to topics broached in the article: Overtreated: Why Too Much Medicine Is Making Us Sicker and Poorer, 2007. A review of the book is here.

Another new book, this one by Roberta Bivins, looks promising: Alternative Medicine? A History, 2007. A review is here.

Call for Proposals: Society for Disability Studies 21st Annual Conference, June 18-22, 2008, NYC

The Society for Disability Studies, probably the premier academic U.S. disability studies organization, has issued a call for proposals for the 21st Annual Conference, to be held in NYC June 18-22, 2008.

The (wonderful!) theme of the conference is "Cosmopolitan? Disability Studies Crips the City."  Submission deadline is Dec. 1, 2007.  Here is an excerpt from the Call:

As Disability Studies becomes more aware of the boundaries of its own discourses, we want to explore critically the lands of its origins, the limits of its imagination, and the challenges of experiencing wider space. Bodies, ideas, and words travel across borders, negotiate restricted space and resistance, and become transformed as they journey. How do notions of disability, Disability Studies, and disability culture shift in these travels? Who participates in these travels and who is denied entrance? How is space produced, enacted, and lived in by disabled people? How are local life worlds configured in space? What is at stake in seeing ourselves as citizens of a more complex world in which multiple, simultaneous identities are engaged in transit and dialogue?

New York, this city of immigrants, is the staging ground for the 2008 SDS conference. Thus, many cherished American ideas are up for grabs: melting pots and assimilation, the energy of new beginnings, the emergence of undergrounds and renaissances, beliefs in rugged individualism and transnational capitalism, mechanisms of control and security, and architectures of access. As we imagine disability and disability studies in this iconic location, we ask, What are our Ellis Islands, our Statues of Liberty, our Grand Central Stations, our Stonewalls? Where are our Christopher Streets, our Broadways, our Greenwich Villages?

More helpful details and context are available on the website, including accessibility instructions for submitters.   

Conference: The Healing Power of Ancient Literature

The Parker Institute is sponsoring a symposium on The Healing Power of Ancient Literature June 19-20, 2008 in Reno, NV.  The Announcement reads:

The symposium's premise is that literature, especially ancient literature, possesses a profound power to heal our souls, a power that is especially needed today when the rapidity of change and the force of world events combine to make peace of mind an ever more distant and seemingly unreachable goal.  Featuring nationally-renowned scholars, the symposium will explore the wisdom literature of Egypt, the Mesopotamian Epic of Gilgamesh, the poetry of Homer, the Meditations of Marcus Aurelius, and the Biblical book of Ecclesiastes as sources of enlightenment and inspiration.

For further information, contact Dr. Lois Parker (loisp@unr.edu).

Blogrolling

I was pleased to see the unveiling of the Neuroethics Society Blog, run by Emily Murphy, whom I have had the pleasure of meeting (and arguing with!).

The blog has a neat format -- members of the Neuroethics Society are invited to compose posts and send them to Emily for posting.

Recommended!

On the Genetics of Jewishness

Guest-blogging over at PrawfsBlawg, Howard Wasserman asks for reactions to the AEI-sponsored book forum on Jon Entine's new book, Abraham's Children: Race, Identity, and the DNA of the Chosen People:

The gist of it is that Jews are a distinct race with distinct DNA developed over 5768 years of culturally urged inbreeding. And that unique DNA is linked to Jewish intelligence--Entine cites statistics that the average IQ for Ashkenazi Jews is 107-115, and 122 for verbal IQ, while the human average is 100.

I thought I'd re-post here my comments:

Because eugenics is a dirty word, people often forget that Galton's usage of the term was entirely positive, such that the notion of a eugenic characteristic redounding to a race could be profoundly positive.

However, as many scholars have noted, the genetic and biological reification of race is deeply problematic. Even though "race" is a scientifically incoherent concept (because in-group variation is greater than between-group variation), much of the biomedical literature and discussion focuses on concepts of genetic linkage, which at least some scholars find troubling (see, e.g., Braun, 2002; Roberts, 2003; Kahn, 2005).

The minute we start Othering persons by virtue of their genes, we set the stage for significant mischief. The history of disability policy in the 20th century alone easily shows this, and the linkage of Jewish identity to genes should be enough to give any serious student of the history of science and research ethics the horribles, frankly. (Which doesn't mean per se that it is inaccurate -- though I absolutely think it is -- but does mean that one ought to think very, very carefully, in an ethically and historically informed manner, about the implications of constructing a notion of identity based on genes).

Not to mention which, the entire concept of "genetic causation" is deeply flawed in public discourse, by scientists and laymen alike, as scholars like Keller and Lewontin in particular have demonstrated time and again. Genes don't cause anything per se; rather, their expression is the product of the behavior of a nonlinear dynamical system, with an untold number of variables and causal factors all interacting in iterative, interrelated fashion. This is in part why the study of epigenetics is a much more interesting field of inquiry than the study of genetics -- the genetic information itself doesn't really matter, because the expression of that information virtually never (with rare monogenic conditions like Huntington's chorea being exceptions) proceeds in a linear, self-determining manner. Kind of Wittgensteinian -- the rule never by itself determines correct applications.

Much more interesting, as Keller notes, is gene action -- how do genes act? And there are a great many social factors implicated in genetic causation that often go completely unmentioned in thinking about notions of genes and identity.

Moreover, what does it mean to be "genetically superior?" Surely not more intelligent, because Cosma Shalizi's excellent post of a few weeks back shows just how weak the argument for g is at this point. The notion that some heretofore mythical g, if found, could be used as a basis to differentiate a "race" is scientifically flawed, and ignores the important notion that race is a socially constructed yet nevertheless "real" category. If Jews were to be more intelligent, the notion of that being "caused" by genes simply does not make any sense, and relies on a linear, reductionist, deeply flawed model of genetic causation. A plethora of environmental and social determinants are a sine qua non for any kind of expressed intelligence.

The fact that Ashkenazi Jews "carry" genetic differences does not imply that we can identify Ashkenazi Jews by virtue of the Tay-Sachs or BRCA mutations, because plenty of Ashkenazi Jews carry neither, and plenty of non-Ashkenazi Jews carry either (the Japanese feature higher rates of Tay-Sachs carriers, for example).

My overarching feeling, then, is that the entire terms of the discussion relied on a notion of genetic causation that is likely to confuse, at the very least. In addition, I think stakeholders would be well advised to weigh carefully the ethical and historical implications of constructing group identity -- particularly Jewish identity -- on the basis of so-called "genetic" differences.

On the American Health Care 'Nonsystem'

Ezra Klein has a solid analysis of the latest Commonwealth Fund report on American health care.  He misses what are a few paramount problems, IMO, such as the misallocation of resources to public health and preventive medicine, but the whole post is generally worth reading.

Excerpt:

How good is American health care? The developed world is full of alternative models, fully functioning structures that can be viewed as little experiments, the outcomes of which should inform our policies. If our system outperforms its competitors, than we should amplify what sets us apart and pushes us ahead. If we under-perform, we should take a hard look at whether our model really is superior. And luckily, we have the data.

Recommended.

Articles Notice: Global Health Law & Medicating Kids

Available at SSRN is Jennifer Prah Rugher's article, "Normative Foundations of Global Health Law," which Larry Solum honored as "Download of the Week" at his Legal Theory Blog. Although she is far more sceptical--or reticent--than I would like about the role of international law (i.e., 'global health law') here, she does a fine job of articulating possible normative principles, i.e., the moral foundations, "for global health law as guidance on critical health issues." Please see: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1024781 

Secondly, in what I consider my hometown newspaper, "the Times," no, not that one, but the Los Angeles Times, there is a very important article on the psychiatric profession's increasing penchant for diagnosing and treating putative mental illness in children (now it's my turn to be sceptical!). Here's a provocative excerpt from the beginning of the article, but by all means read the entire piece courtesy of http://www.latimes.com/features/health/la-he-psychkids5nov05,1,2120472.story?coll=la-headlines-health

KATIE'S middle child "has always had a lot going on in her head," says her mother. And much of it has been a mystery to Katie, who has coped with her daughter's escalating tantrums, combative behavior, bouts of fearfulness and just-plain-oddity since the 11-year-old was a toddler.

A month ago, Katie, a 38-year-old L.A.-area mother of three, brought the child to a psychiatrist. The child's behavior and performance in school were exemplary, but an ill-tempered outburst had gotten the preteen kicked out of a Girl Scout troop she had joined at age 5. The girl was confused and heartbroken over her ejection.

The daughter came away from the appointment with a diagnosis of bipolar disorder. Katie, who asked that her full name be withheld to protect her daughter's privacy, came away with a list of 10 powerful psychiatric medicines and a momentous decision to make. Some combination of these mood-stabilizing, anticonvulsive and antipsychotic drugs, Katie was told, would probably control her daughter's problematic behaviors, referred to by her psychiatrist as symptoms of a disease.

Now it's Katie who has the racing thoughts and the alternating bouts of fear, anxiety, relief and anger. As she ponders whether her daughter's strange behavior really amounts to mental illness -- and whether medication is the answer -- she says, "I feel like I'm flying blind."

And she's not reassured by the suspicion that the psychiatric profession is as confused about diagnosing and treating mental illness in children as she is.

All these psychiatric labels and pills may keep many kids on track and even save lives, Katie says. But both seem to be dispensed with little certainty as to what they mean and how they work -- and even less debate over their long-term consequences for children.

In 2005, the latest year for which statistics are available, at least 2.2 million American children over the age of 4 were being treated for serious difficulties with emotion, concentration, behavior or ability to get along with others. It's a figure mental-health professionals say has exploded in the last decade and a half, along with sales of a wide range of psychiatric medications for use by children.

A welter of studies has shown that kids are being diagnosed at younger ages, with a wider range of disorders and with more severe disorders than ever before. And in growing numbers, they are being medicated with drugs whose safety, effectiveness and long-range effects on children have not been demonstrated by extensive research.

A study published in September found that the diagnosis among children of bipolar disorder, a mental illness long thought not to exist in kids, grew 40-fold over the last decade. The prescribing to kids of antipsychotic drugs typically used to treat the symptoms of bipolar illness have soared as well, despite continuing concerns over side effects such as weight gain, metabolic changes that can lead to diabetes, and tremors.

Psychiatrists admit they haven't drawn clear lines between problem behaviors and mental illness, especially in kids, and they are debating future fixes. But until those fixes are made, parents -- with their kids' futures on the line -- are left with little to guide them when a child is tagged with a psychiatric label.

And be sure to check this additional link with the article on how "changes in psychiatry's 'bible' altered children's care": http://www.latimes.com/features/health/la-he-psychside5nov05,1,940818.story?coll=la-headlines-health

Have a good week everybody.