Medical Humanities Blog

On The Rolling Exhibition

I was fortunate to catch the story on 20/20 about Kevin Connelly, a photographer and professional athlete (Note: there is much to comment on regarding the program's portrayal of Connelly, but I want this post to be more about Connelly and less about media criticism).  Connelly, who won a silver medal in the X-Games for mono skiing, lives in Bozeman, MT.  Using his winnings, Connelly indulged his travel bug, and took approximately 36,000 photographs along the way.

Connelly's gaze is particularly important because of its vantage point, and because of what stares back into it.  Connelly was born without legs, and primarily uses a skateboard for personal locomotion.  As he maneuvers himself with his left hand, which is also used for propulsion, he maintains balance with his right hand while simultaneously snapping photographs with the camera.  The camera is in his right hand, generally.

There is an excellent literature in disability studies on the gaze, explored through critical analysis of literature as well as of visual media like art, dance, and performance studies.  What Connelly stares back into is the freakifying gaze of passers-by as they gawk at him.  In the interview, Connelly, who was articulate, forthcoming, and insightful, indicated that, on the one hand, he understands the curiousity underlying the gaze.  Yet, on the other, he was getting tired of all the unadulterated stares, and so he began taking pictures as a means of gazing back.  What stories are his interlocutors constructing? How do they make meaning of what they see before them (Connelly)?

What's more, Connelly manages to keep the gazes appropriately contextualized.  The narratives his subjects construct vary widely with culture and context.  As he notes on his web site:

1 year ago I was asked by a little boy in Christchurch, New Zealand if I had been eaten by a shark.

2 months ago I was asked by an elderly woman in Sighisoara, Romania if I had lost my legs in a car accident.

6 weeks ago I was asked by a bar patron in Helena, Montana if I still wore my dog tags from Iraq.

Everyone tries to create a story in their heads to explain the things that baffle them.

One should not lose sight of the quality of the art: Connelly is a talented photographer.  The expressions of his subjects, Connelly's use of art in a performative, empowering way, to stare back at those who stare at him, comes together in a collage of cultures, faces, and stories.

Recommended.

Post on the Place of the Medical Humanities in Medical Education

Johanna Shapiro has a wonderful post up at Literature, Arts & Medicine Blog about the place of the medical humanities in medical education:

The institution of medicine is deeply rooted in certain mechanistic, linear, positivist, objectivist, and reductive assumptions that are expressed every day in the ways physicians behave and the system as an entirety works; and which make it difficult to see the humanities as anything other than, at best, a nice but not essential, part of medical education; and at worst, pretty much a waste of time. Even if institutionalized medical education “makes room” for the humanities, it will do so on its own terms. This is not necessarily bad, but it is also not necessarily sufficient.

As they say, go read the whole thing.

Wonky Links

Abundant guest blogger Frank Pasquale has been issuing some interesting posts over at Concurring Opinions.  I am biased because Frank is kind enough to guest blog here at MH Blog, but I particularly like the way his (subjective) normative preferences are always plainly stated.  Frank and I have had several conversations across blogs and otherwise in which we have discussed the value of subjectivity, and this is further evident in the way he weaves narratives into his analysis of health policy (see this collection for further analysis).

In this regard, Frank also writes consonant with the ethos of the Renaissance and medieval humanists who stressed the importance of the subject in thinking about ethics.  Montaigne, the patron saint of MH Blog, is the paragon of this exemplum, and the reason why is contained in the subheading of this blog: C'est moi que je peins (it is myself that I paint).  Montaigne was acutely aware that his Essais were nothing if not his own subjective views on all manner of social and cultural practices.  The verb essai itself means to attempt, to assay, which is exactly what Montaigne was doing. 

So, whether one agrees with Frank's policy positions (and I freely admit to agreeing with many of them, though often for slightly different reasons), his perspectives are always worth engaging.  We are subjective creatures, and my dissertation on pain will evaluate the merits of limning the Self with the veneer of a constructed and dubious notion of objectivity.

In any case, Frank has several excellent posts, concluding with his most recent post, which references epicycles and market-based health care.  Frank, anyone familiar with Kuhn's The Copernican Revolution would be quite aware of the significance of the metaphor (a personal favorite of mine and an elegant demonstration of the inferential power of Occam's Razor).

On Insurance and Health

We have noted on this blog the relatively weak evidence for the proposition that lack of insurance coverage and access to care has a pronounced effect on health.  For understandable reasons, many assume that a strong relationship exists between the two variables, but the evidence for this assumption is lacking.  What's more, given the Whitehall studies, there is good evidence that pronounced differences in health outcomes persist even when the population in question enjoys coverage to basic care. 

I have argued that the case for increasing access is therefore on sounder footing if made on ethical grounds than on policy grounds that doing so will substantially improve population health.  In addition, I continue to believe that we would do well to direct some of the energy and focus we spend on the access debate to agitating for a reallocation of health care dollars to public health and primary prevention, both of which are on much firmer empirical footing in terms of their likely effects on improving population health.

All of this is context for a study released yesterday in CA: A Cancer Journal of Clinicians (an American Cancer Society journal) entitled Association of Insurance with Cancer Care Utilization and Outcomes.  The study produced statistically significant survival differences based on insurance.  According to the ACS press release, the study found that

About 89% of privately insured white women with breast cancer survived at least 5 years, compared to 76% of white women with Medicaid or no insurance. Among African-American women, 81% of breast cancer patients with private insurance survived 5 years, compared to 65% of those on Medicaid and 63% of those without insurance. A similar pattern emerged in colorectal cancer. Among white patients with private insurance, 66% survived 5 years, compared to 50% of those with no insurance and 46% of those on Medicaid. Among African Americans, 60% with private insurance survived 5 years compared to 41% of the uninsured and Medicaid patients.

This study suggests, of course, that lack of coverage is relevant to health outcomes as to cancer.  Several points are worth noting here: first, given that all manner of primary prevention interventions are in fact contingent on coverage, one should be careful about drawing conclusions from this study as to the overall effect of acute care on population health.  The study notes this, of course, reporting that the uninsured subjects had significantly lower access to cancer prevention programs and education, as well as lower access to early detection and screening programs.

Second, only about 4% of U.S. cancer patients are uninsured.  Accordingly, it is fair to wonder whether, even if insurance status is strongly linked with cancer outcomes, increasing access will have a large impact across the entire cancer population, let alone the U.S. population.  Third, finding a significant positive correlation between insurance status and health outcomes should not be taken as proof that insurance status is a primary factor.  The evidence has generally been lacking that it is a significant factor at all, and this study does not evaluate the relative contribution insurance status makes to outcomes as compared with other factors (i.e., health literacy, relative socioeconomic disparities, early child development, etc.)

None of these cautions detract from the study, which seems to me to have been thorough and well-done, and which certainly provides evidence that there may be a stronger link between insurance and health outcomes than prior work has demonstrated.

The Library of Medicine's Online Collection

Disability studies blogger extraordinaire Penny Richards brings word that the National Library of Medicine has an extensive online collection.  She has a fascinating post on how technical innovations are often developed "first for disability-related applications and only later translated to wider use."

Though I'll hopefully have more substantive commentary on some of the images for a future Imaging the Medical Humanities post, but given my interest in pain, I pulled these images (below the fold) that may be of interest.

Webcast on Link Between Disparities and Social Determinants of Health

Those of you who have been interested in our focus on prevention, public health, and the social determinants of health might consider checking out Kaiser Health's HealthCast on Reducing Health Disparities Faster: Addressing Social Determinants of Health.

Kaiser's HealthCasts are generally indispensable, and are available via web video feed, podcast, and in transcript form.  This one was particularly good, IMO.

On HDT/ABMT for Patients with Advanced Breast Cancer: The Final Word?

We've previously covered the story of high-dose chemotherapy + autologous bone marrow transplantation ("HDT/ABMT") being used experimentally on patients with advanced breast cancer, and have argued that the narrative is relevant both to the therapeutic misconception and to the ongoing Abigail Alliance litigation, which is currently pending on writ of certiorari at the U.S. Supreme Court.

Todd Ackerman, the fine medical journalist for the Houston Chronicle, reports today on the results of a systematic review of the efficacy -- or lack thereof -- of HDT/ABMT for patients with advanced breast cancer.  Excerpts:

In releasing their report on a review of existing studies, the researchers said women who received high-dose chemotherapy, followed by transplants from their own bone marrow, fared no better than patients on other therapies.

"This shows more is not necessarily better," said Donald Berry, head of quantitative studies at the University of Texas M.D. Anderson Cancer Center and the review's lead investigator. "We're still in the dark ages at recognizing who benefits from which treatment, but we've seemed to reach a plateau delivering chemotherapy."

Berry's quote there is particularly important, as it underscores the uncertainty in the efficacy and benefits of different treatments for breast cancer, which, as Jay Katz documents, is all too often suppressed or diminished, rather than disclosed.

Ackerman continues:

The analysis, presented at the 30th annual San Antonio Breast Cancer Symposium, appears to be the final confirmation that the once cutting-edge therapy shouldn't be an option for women whose breast cancer has spread to their lymph nodes.

The therapy fell out of favor after four randomized studies presented in 1999 showed no benefit, and a fifth that did show a benefit was revealed in 2000 to have been falsified.

Actually, HDT/ABMT was never evidence-based therapy at all, but was an experimental protocol that was hoped to be therapeutic for advanced breast cancer patients (HDT/ABMT is evidence-based therapy for other cancers, particularly certain leukemias, which underscores the importance of understanding that "cancer" is really about 150 different diseases).  The fact that it was never "therapy" at all is itself an apt example of the power and scope of the therapeutic misconception.

Berry said he was surprised that the review did not show even a subset of patients who benefited from the therapy.

Perhaps this review will constitute the final word on this sad story, in which dozens, if not hundreds of women suffered -- the procedure itself has horrifying side effects -- and may have even died prematurely due to the statistically significant mortality risks from the procedure.  The story also reminds, as many commentators have noted, that terminally ill patients can be conceived of as a vulnerable population insofar as the power of hope is enough to prompt many such patients to undertake virtually any experimental protocol that provides even the tiniest glimmer of such hope.

Health Wonk Review

The last HWR of 2007 is up at David Harlow's tastefully decorated HealthBlawg.  We made the Review, so go check it out.

On Fatness and Health

Here at MH Blog we've posted some skeptical perspectives on food science and obesity policy.  From a medical humanities perspective, there seems a very great deal of stigma and notions of deviance wrapped up into the talk of the "obesity epidemic," the word "epidemic" being a rich marker of cultural and social significance.  What's more, attitudes towards the connection between fatness and disease generally do not acknowledge the tremendous uncertainty involving metabolism, weight, and health, as Gard and Wright so ably demonstrate.

The idea, of course, is not that morbid obesity is good for one's health, but (1) that the attitude of certainty and self-evidence typically displayed when discussing weight and health belies the rather significant uncertainty in food science and metabolism; and (2) the stigma attached to fatness -- witness recent studies pointing to its contagiousness and its epidemic status -- promote an untoward focus on lifestyle and behavior as the cause of much chronic disease.  Of course, it is undeniable that weight is in some significant sense connected to many chronic diseases, but a narrow focus on individual behavior obscures the larger social structures that mold and shape individual choices.  It is true that smoking causes lung disease; but it is also true that smoking adheres to a robust social gradient, with members of lower socioeconomic classes smoking at much higher rates.  Unsurprisingly, the same populations report higher incidences of obesity, diabetes, and cardiovascular disease.

Thus, to simply point to behaviorial preferences such as smoking is a thin inquiry if not connected to an awareness and an analysis of the social determinants of behavior.  I mention all of this as context for the news of a new study appearing in JAMA reporting that fitness level was a strong predictor of mortality, while obesity had little influence.  The study cohort was comprised of adults aged 60 and older, and demonstrates what fat activists have been arguing for years: fatness is relevant to health, but less so than fitness.  From a policy persective, then, much greater resources and attention should be devoted to exercise promotion, and much less devoted to obesity policy and BMI measurement, especially insofar as the latter is deeply stigmatizing.

Thoughts?

More on the Therapeutic Misconception

We've previously covered the therapeutic misconception (TM).  In an important article released in the latest PLoS Medicine, a group of distinguished scholars reported on their efforts to frame a useful definition of the therapeutic misconception.

The article was produced out of a workshop attended by some of the most influential theorists on the therapeutic misconception.  They report discordance in the literature regarding the proper definiton of the TM, and that such disagreement was reflected in the workshop itself.  To wit:

We considered whether the following question could be part of an instrument designed to measure TM:

“The purpose of the study is:

• (1) Only to help patients enrolled in the study, or
• (2) Both to help patients enrolled in the study and patients in the future, or
• (3) Only to help patients in the future”

There was consensus that answer (1) is incorrect and reflects misunderstanding of the purpose of research studies, but there was disagreement about whether the correct answer was (2) or (3). Those who argued that (3) is the only correct response believe that the purpose of a trial is to further science and help future patients, not to help the patients enrolled in the study. According to this argument, the purpose of an experimental intervention is not to provide treatment (i.e., clinical trials are not treatment). The presence of concomitant clinical care and the potential for benefit associated with trial participation should not be confused with the fundamentally scientific goals of clinical trials.

In contrast, advocates of (2) as the correct response believe that helping patients enrolled in a study can be a legitimate additional study purpose. This may be because research and clinical care procedures and activities overlap, or because administration of an experimental agent is seen both as a means to learn about its safety and efficacy and as an appropriate therapeutic option. This conceptual debate reveals the difficulty of applying general assessments to trials that employ very different study designs.

The latter response is unpersuasive to me.  The idea is certainly not that individual subjects never benefit from participating in clinical trials.  A generic participation benefit stemming from such participation, for example, is well-known.  From a medical humanities perspective, such a benefit is entirely unsurprising, as humans are social creatures and often make meaning in the face of illness by participating in all manner of practices (i.e., counseling, helping others, etc.).  However, it does not follow from this that the macro-level purpose of the study is to benefit the individual patient.  Not every patient who participates does enjoy the participation benefit, of course, nor is the primary objective of the vast majority of clinical trials to produce individual benefits for the subject.

That some subjects may in fact benefit is a fortunate byproduct of the clinical research process, but it would strain the premise, IMO, to conclude therefrom that a primary, macro-level objective of a study is to provide direct benefit for the individual patient connected to the particular intervention being evaluated.

In any case, the authors produce a definition of the TM that contains five components relating to (1) the scientific purpose (to produce generalizable knowledge); (2) the study procedures (that are often not necessary or even connected to clinical care); (3) the uncertainty of the risk-benefit ratio for experimental interventions; (4) the need for strict adherence to protocol (even where, e.g., CPGs might allow more flexible treatment protocols); and (5) the clinician is an investigator in context of the trial.

While I think these components are well-founded and go a significant way in illuminating some of the key features of the TM, I am too much a devotee of later Wittgenstein to feel comfortable with straining for definitions.  The effort to shed some light on conceptually cloudy aspects of the TM is surely well-advised, but I think the search for definitions of inherently ambiguous and malleable concepts is, as Wittgenstein warned, an attempt to open doors that are painted onto walls.

I concur that the notion of the TM is ambiguous, but nevertheless feel quite strongly that its constellation of meanings is decipherable to be germane to our practices.  As Wittgenstein argued, the fact that there is no logical connection between a rule and its definition hardly implies that our practices are not sensible.  IMO, we can make much of the concept of the TM in practice even without an unambiguous definition.  Indeed, I happen to think we can generate a very great deal more use out of the concept than we currently do.