Medical Humanities Blog

Article Review

Lots of great articles worth mentioning on SSRN, covering a wide variety of issues and approaches.  Topics addressed below the fold include:

• Tipping Points in health law & politics;
• documentary filmmaking, obesity, and health inequities;
• women's motivations for participating in basic and clinical research;
• the aftermath of the Terri Schiavo case;
• strategies for urban health policy and governance; and
• coal mine safety.

All links are full-text unless otherwise noted.

Metaphor & Illness

One of these days I'll have to send Frank Pasquale a thank you card for his endless supply of rich blog fodder.  His latest post addresses the recent study that pronounced obesity an epidemic in the sense of contagion:

The study reminded me of the troubled place of metaphor in contemporary reasoning. I recall reading many libertarians who dismissed the idea of an obesity "epidemic"--who felt this designation unduly alarmist and politically manipulative. An "epidemic" unfortunately calls to mind quarantines, panic, and an uncontrollable disease vector. But the ideas of "contagiousness" and "communicability" provide useful frames for thinking here, like Dawkin's translation of natural genetics into cultural memetics. (For the legal implications, check out Balkin or Cotter.)

A key question here is: would the "epidemic metaphor" be valid without the empirical study to back it up? I think so, because the "transmission mechanism" here appears to be a change in individuals' understanding of obesity

We've pointed out that the significance of metaphor in making meaning of illness experiences is an integral and fundamental point of inquiry in medical humanities discourse.  It's one reason narrative studies has proven so significant in thinking about health and illness, such that Rita Charon -- a physician herself -- argues that narrative thinking is quite literally therapeutic.

Of course, metaphors are so powerful that they can be used for great good or great mischief, as Sontag makes so artfully clear.  And Deborah Stone -- no mean scholar of health policy herself -- argues quite persuasively for the importance of metaphor in animating policy discourse.

The use of the metaphor of "epidemic" is heavily value-laden, of course, and carries with it a host of social, political, and social concretions.  Gard and Wright make a compelling case for this in their recent book aptly (and ironically) entitled The Obesity Epidemic.

The use of the metaphor of epidemics is highly strategic from myriad discourses -- policy, moral, cultural, etc. -- and perhaps the best demonstration of such power is Camus's The Plague, which characterized an epidemic of plague but was quite advertently used by Camus as a metaphor for Vichy occupation (another excellent example of the use of illness metaphor to make political statements in Solzhenitsyn's Cancer Ward).

Finally, given the stigma that is so pervasive in thinking about fatness, I personally exercise caution in accepting such findings at face value.  What does it really mean for obesity to be contagious? That the root causes of the condition are grounded in social practices which are more likely to be shared among intimate groups of peers and family members? This strikes me as significantly unsurprising if one thinks deeply about the social determinants of health.

So the literal results of the study hardly break new ground, IMO.  What is novel is the characterization of obesity as truly and literally contagious.  And given the history of contagion as a trope for stigmatizing behavior, and the significant stigmatization of fatness in general, I think caution is warranted in accepting such claims at face value.

BLOGVERSATION: Kate Harding's Shapely Prose.

Health Wonk Review

Readers of the MH Blog may have noticed a bit of a turn to health policy matters in recent months.  This turn reflects both some of my professional and developing scholarly interests, as I have begun to cultivate an interest particularly in public health policy and associated discourses.

With that in mind, we at MH Blog are proud to join Health Wonk Review, and to link to the latest version, hosted by Bob Laszewski over at Health Care Policy and Marketplace Review.  Shameless Plug: a post of ours made the Review.

Lots of fascinating posts worth looking at. 

FYI, we will be hosting the Health Wonk Review on August 23, 2007.

Palliative Care Conference

Just a hop, skip, and a jump from my own lair, the University of Texas M.D. Anderson Cancer Center is hosting the 11th Annual Interdisciplinary Approach to Symptom Control, Palliative and Hospice Care Conference on September 28-30, 2007.

The Goal of the Conference, according to the website:

Caring for the cancer patient in the advanced stage of illness is particu­larly challenging to the healthcare team. It requires attending to the many dimensions of care including medical, psychosocial, ethical and spiritual needs. This is the eleventh year of the conference. It continues to be important to provide educational updates in the field of palliative and hospice care - which includes pain, other symptom management and end-of-life issues. We believe this conference will provide participants with practical information with which to better care for patients with advanced cancer and other illnesses and their families.

Perhaps of particular interest to the medical humanist, the Conference features a Poetry Submission:

In commemoration of World Hospice & Palliative Care Day, we are accepting poetry submissions to raise awareness about hospice & palliative care. Submitted poems will be displayed at the conference.

Please e-mail your submissions to Veronica Kathukya at vmkathuky@mdanderson.org no later than September 14, 2007 if you would like to participate in this commemorative gesture. If you have any questions please contact Veronica at 713-745-4125.

Further details can be found on the website. 

Survey on Medical Error

We've covered the topic of medical error on this blog before, as I happen to believe it is a particularly important subject of inquiry for the medical humanist.  Though medical error has important legal implications, its significance goes far beyond tort law.  One of my favorite works in the field is Marianne Paget's 1988 book, Unity of Mistakes: A Phenomenological Interpretation of Medical Work.  I've mentioned this book before, but there are two aspects of the work that make it particularly powerful and important:

First, Paget's background as a sociologist gives her a different and perspicacious lens for examining the phenomenon of error, and, more so, helps her avoid the all-too-common mistake of focusing solely on the patients (more on this in a moment); and

Second, Paget's life embodies her work, quite literally, as she died in 1989 of a cancer that was repeatedly missed by a number of physicians (medical error).

Much work on medical error locates the patient as the sufferer, and there is no doubt a victim of medical error is indeed a sufferer.  But Paget is attuned to the ways in which the physicians suffer as well.  This is not to compare the physician's suffering to the patient's, in any way, shape, or form, but simply to note that the virtuous physician who commits medical error is extremely likely to suffer, in a real and excruciating sense.  Those who would deny the awesome power of guilt should go back and read their Kafka.  (Sidebar: Kafka's work is also important in understanding narratives of illness for a variety of reasons, and I should disclose I absolutely adore his work).

Paget notes that the culture of biomedicine is not accepting of error.  Despite the fact that clinical practice is a highly uncertain enterprise, and despite the fact that errors are bound to occur, Paget writes that the prevailing attitude she observed was that errors were unacceptable.  This had the effect of isolating the erring physician from his/her peers, and thereby cut the physician off from the community of professionals in the best position to understand why and how the error occurred.  A path to empathy and healing for the physician was completely closed off by this attitude, and Paget saw how devastating this professional alienation could be.

Worse, the only way errors were addressed in Paget's field work was via M&M rounds, which are notorious for their lack of empathy, and which all too often turn into a forum for retrospective criticism and even ridicule.  This only exacerbated the problems of the cultural denial of error that Paget perceived.

Writing in 1988, well before the seminal IOM report on error, I think Paget was well ahead of her time.  On this note, the August edition of the Joint Commission Journal on Quality and Patient Safety features a fascinating article on the emotional impact of medical errors on practicing physicians.

Among its findings: physicians reported a number of symptoms of stress and anguish about medical error, including anxiety about future errors, loss of confidence, sleeping difficulties, reduced job satisfaction, and harm to their reputations.  Moreover, the survey shows that biomedical culture has not come as far as one might like since Paget's observations, as only 10% of the 3171 subjects felt that health care organizations adequately supported them in coping with stress related to medical error.  82% of the subjects reported that they were "somewhat or very interested" in counseling.

In the increased focus on medical error, it is important not to forget that the errors arise out of practices, which are by definition intersubjective.  While no one can or should compare the suffering of patients who have experienced medical error with that of physicians who err, a properly medically humanist lens suggests that the physicians' suffering ought not be disregarded.

Reports on Pain Policy

The Pain & Policy Studies Group at the University of Wisconsin, the U.S.'s leading shop for pain policy, has just released (July 18) the fourth editions (2007) of their indispensable Achieving Balance Reports.  For those who have never reviewed these Reports before, there are two Reports: one, an Evaluation Guide of Federal and State Pain Policy, is a 720-page document meticulously detailing each state (and the federal) government's policies and the specific ways in which they either promote the principle of balance in pain policy, or impede it.

The second report is a Progress Report Card, listing whether individual governments have made progress in achieving balance, and if so, how progress was made.

The reports are supported by grants from the American Cancer Society, the Susan G. Komen For the Cure Foundation, and via agreement with the Lance Armstrong Foundation.  They can be downloaded for free in .PDF format from the website, though hard copies are unavailable of both the third (2006) and the fourth (2007) editions.

The press release accompanying the fourth edition can be found here (.PDF).  As mentioned above, these reports are simply indispensable for anyone remotely interested in pain policy.

Conference on Maternal Health and Well-Being

The Association for Research on Mothering at York University (Toronto) is hosting its 11th Annual Conference October 18-20, 2007, the theme of which is Maternal Health and Well-Being (physical, psychological, social, economic, sexual, political, and spiritual issues).  A second call for papers has been announced, and the deadline is August 1, 2007.

From the website:

We welcome submissions from scholars, students, activists, health care professionals and other health workers, artists, mothers and others who work or research in this area. Cross-cultural, historical and comparative work is encouraged. We encourage a variety of types of submissions including academic papers from all disciplines, workshops, creative submissions, performances, storytelling, visual arts and other alternative formats.

Topics can include (but are not limited to):

maternal health promotion and education; globalization and maternal health; maternal health activism; reproductive justice; public policy and maternal health; the environment and maternal health issues; mothers and healthy living; maternal health and challenges within Indigenous communities; mothers with disabilities; mothers with illnesses; HIV/AIDS; breast cancer; mental health issues; postpartum depression; disease prevention; psychiatry; psychology; medicine; pregnancy; childbirth; breastfeeding; young mothers; mothers and aging; work and family balance; maternal nutrition; disordered eating; mothering children with disabilities; violence against mothers and children; sexual abuse, healing through the arts; addictions and recovery; raising healthy children; politics of reproduction; abortion; sterilization; maternal sexuality; maternal health promotion and education; LBGT maternal health issues; menstruation; menopause; mothers and the health professions; representations/web_images of mothers and health/well-being issues.

Further information is available on the website.

Medical Humanities Bookworm: Survival of the Sickest

Today's Medical Humanities Bookworm reviews Survival of the Sickest by Dr. Sharon Moalem with Jonathan Prince.

Moalem has a Ph.D in human physiology with a focus on neurogenetics and human evolution, and is currently finishing medical school at Mount Sinai College of Medicine in New York City.

Oversimplified, Moalem's thesis is that many diseases, especially chronic ones, may continue to exist in the gene pool because they supplied our ancestors with evolutionary advantages.  This is unremarkable.  It has been known for quite some time, for example, that sickle cell trait confers resistance to malaria, which is one reason why persons of African descent are virtually the exclusive carriers of sickle cell trait.

But Moalem goes much further, and argues that many diseases that had not been understood in the context of reproductive fitness actually did confer an evolutionary advantage, such as hemochromatosis, plague, and juvenile diabetes.  Much of the book is devoted to explanation of how these diseases did confer such advantages. 

Moalem goes further, however, in drawing on the circular geometry of systems biology (the feedback loop model being one of the most common and useful metaphors), and reasons that it is important not to overlook the ways in which human activities have prompted evolutionary changes, as well.  Extreme virulence tends not to confer evolutionary advantages on microbes simply because the human host may die too quickly, before the microorganisms have a chance to secure a new host.  This is one reason why microbes that have some of the longest histories of human infection have evolved to exist in relative stability with the human host.

One example of this is bacteria in the gut, and an even more extreme example of this may be mitochondria, which are descendants of ancient bacteria that evolved to become a crucial part of human cell biology.  Moalem cites some of the ideas of biologist Paul Ewald to argue that we should consider entirely new strategies of understanding disease, and that measures designed to prompt evolutionary changes in dangerous microbes may potentially be more effective than current forms of treatment.  Unfortunately at least in the case of bacteria, our most common and effective means of treatment promotes increased virulence by way of drug-resistance.  Ewald, and Moalem, suggests that perhaps we can harness this relationship in our favor.

All in all, I liked the book, though I did have several reservations.  The first is the "evolutionaziation" of social phenomena, which might be analgous to medicalization.  That is to say, it is axiomatic in the medical humanities that illness is experienced socially, and that seeing such experiences solely via the clinical gaze is reductionist and transforms the provider into a technician who merely treats the disease, as opposed to healing the patient.  There is a similar danger, IMO, in seeing illness solely in the context of evolutionary advantage.  This is not deny the significance of evolution in our understanding of pathology and disease, but simply to suggest that there may be a tendency to grant far too much explanatory power to evolutionary theory.  The extension of such theory into domains in which other modalities may reveal much more of human and ethical significance is the very definition of scientism.

This is not to accuse Moalem and Prince of outright scientism, especially because Moalem's personal story of how he became interested in these problems -- in light of his grandfather's illness -- is heartfelt and touching.  Moalem and Prince understand the significance of the intersubjective and social elements of illness, but I would have preferred much more focus on these issues than on evolutionary paradigms.  But, I am a medical humanist in-training, so I suppose such a response from me would hardly be unexpected.

If I am wary of the tendency to seek to explain so much of health and illness in context of evolutionary theory, I am frequently dismayed by the ways in which genes are portrayed.  Contrary to what many believe, genes themselves explain little of human health and illness, because genes exist only in a nonlinear dynamical system in which countless attractors and influences (including other genes) work in integrated and complex ways to produce overall system behavior.

In short, as Evelyn Fox Keller reminds, gene action is far more interesting than genes themselves, because what we should like to know, IMO, is how genes work to produce actual effects.  And this is an infinitely more complicated question than deciphering genetic information in and of itself, which is partly why the Human Genome Project, as important as it clearly is, has not yet revolutionized human existence.

I did enjoy the book, and Moalem's perspective is certainly intriguing.

Call for Papers: 5th Conference on Medical Anthropology at Home

The 5th Conference on Medical Anthropology at Home is scheduled for May 8th-11th, 2008, at Aarhus University in Denmark.  The Conference has issued a call for papers with abstracts due September 1, 2007:

We would like to point to medical anthropology’s growing engagement and cooperation with local medical institutions and medical research units as not only isolated approaches to research of health and illness, but as one leg of a triangle of interconnected social and scientific processes with certain consequences. The triangle consists of medical anthropology, the health care system and the client society. This triangle is made up by three powerful but also interdependent actors that influence each other and presumably exhibit a shift of balances compared with former years of medical anthropological research.

We would like to invite papers for MAAH 2008 that address the above mentioned triangle of medical anthropology interacting with health system and client. As more specific subthemes within the triangle we have chosen 1) chronic illness, 2) multiple medical realities and 3) medical anthropology as a science undergoing changes. Papers addressing the overall topic or one of the subthemes are all welcome.

250-word abstracts should be emailed to mbris@as.aaa.dk.  Further details are available on the website.

Disability Blog Carnival # 16

As usual, I'm painfully late on these things, but Disability Blog Carnival # 16 is up at Retired Waif, with an ironic theme of "The Disabled -- We're Just Like You!" Lots of great links there, and a particularly wonderful sculpture.