Medical Humanities Blog

Genetic Testing, Disability, & Ethics

Elizabeth Malloy over at the HealthLawProfBlog has a link to a great post of Michael Berube's regarding some of the issues surrounding genetic testing.  Worth reading in its entirety.

The Anarcha Project

I had the privilege of taking a seminar on disability culture with Petra Kuppers, who's presently at the University of Michigan.  She e-mailed to tell me about the status of the Anarcha Project, a fascinating performance study she has worked on for some time.  She asked me to post the following information about it:

Invitation to Public Events, Anarcha Symposium, and to join the Cyber
Anarcha Project as long-distance participants

The Anarcha Project

The Olimpias Performance Research Project runs a nation-wide residency
series on African-American culture and disability culture issues,
funded by the Global Ethic Literatures Seminar at the University of
Michigan, Ann Arbor, the University of Michigan Initiative on
Disability Studies, and participating universities.

In a week’s time, the Anarcha artists, Aimee Meredith Cox, Anita
Gonzalez, Carrie Sandahl, Tiye Giraud, and Petra Kuppers, are hosting
the Anarcha Symposium, an event where artists, activists, healers and
educators assemble to share and respond to the experiences in the
Anarcha Project.

Over the past year, in residencies in Montgomery, Alabama; Ann Arbor,
Michigan; Davidson, North Carolina and Berkeley, California, we have
used performance methods to address the memory of medical
experimentation on slave women in Montgomery in the 1840s. Anarcha was
the name of one of these women. We explored how performance can offer a
space for our responses to public secrets, (women's) bodies, the
persistence of pain, racialised medical histories, health care
inequalities and survival. Hundreds of people in many workshops have
joined us to remember and make connections: touching history.

1. Public Events

In the Anarcha Symposium, April 4/5, we invite you to these public events:
Wednesday, April 4rd: 2.30, Anarcha Performative Lecture. The Anarcha
Project Artists will use performance, song, poetry and dance to share
our experiences of traveling with Anarcha. Duderstadt Video Performance
Studio, North Campus. Free and open to the public, sign language
interpretation provided.

Wednesday, April 4th,  3.30-5.30: Faculty, Staff, Student and Community
Poster Presentations: Celebrating Disability Culture
Pierpoint Commons, North Campus.

Wednesday, April 4th, 8.30, Lynn Manning: Quiet As It’s Kept. Lynn
Manning, blind African American poet and playwright, in reaction to his
older brother's near-death accident on I-5, composes an audio cassette
letter to his hospitalized sibling.  Lynn takes us on a Dickensian
journey through his experiences growing up in foster homes in the late
1960s and early '70s. Duderstadt Video Performance Studio, North
Campus. Free and open to the public, sign language interpretation
provided.

Thursday, April 5th, 8.00 Anarcha Project Sharing. During the
Symposium, we come together in three investigative strands to create
events of response: a performance, emerging from an intense Performance
Laboratory, a healing event created by healers with intercultural
expertise and by community activists who address inequality and
balance, and a manifesto that addresses how to work on the intersection
of black culture and crip culture, what needs to be done, what we need
to investigate. We will share the results of the symposium on Thursday,
April 5th, 8pm, in the Duderstadt Video Performance Studio, North
Campus. Free and open to the public, sign language interpretation
provided.

2. Cyber Anarcha

We would like to involve people beyond our immediate participants, and
we are aware of the multiple barriers to participation.

I would like to invite you to work with us as cyber participants,
thinking and writing of health, African American remembering,
disability culture remembering, racialisation, institutionalization,
touching pasts, touching bodies in time.

If you chose to join us for this residency period, send me an email. I
will send you a short and specific performance or writing exercise at
the beginning of each day for five days, starting next Monday, April
2nd, ending Friday, April 6th. You will get a ten-minute instruction
each day, and I will also send you an essay introduction to the themes
of Anarcha and to the issues that set this journey in motion, as well
as a website that creatively charts our collaboration.

You can respond in whatever way you like, to as few or as many
instructions as you want, each day, or only once, send us something you
already have, or send us something that isn't written, isn't recorded,
or otherwise made material. We will gladly receive it all.

The resident artists will each day collect what we have been sent, read
it together, and incorporate some of it into our day. We will respond
to you, too, with something we create towards the end of the week (and
with the final Anarcha Anti-Archive website we are working on).

We promise to honor your work, respect its privacy, keep it safe and
yet take risks with it and in response. Please join us! Best, Petra

I had the opportunity to hear Petra discuss the Project down in Galveston, and it really sounded quite powerful to me.

Finding NEMO, Sharing Narratives

There's an old joke that the apple never falls far from the tree, with children and parents. In the case of my siblings, my parents and me, the apples didn't so much fall from the tree as were knocked into a suborbital trajectory, landing about as far from one another as possible while still maintaining a linked genome.

However, as we've grown up, my sister and I have sort of migrated towards one another. Since her graduation from Bryn Mawr in 2004, she's worked at Children's Hospital of Philadelphia, wearing various and multiple research hats, all focusing on pediatrics. (My sister is one of those amazing people who can be around sick children and still smile.) Like me, she really loves the stories that go on behind the disease. This morning, she sent me the website Cure 4 Jack, containing medical information and a blog about a child with NEMO and ectodermal displasia. And as you'll see by the front page, the child, Jack, passed away a few days ago.

Touching, sad, and at times very funny, Jack's parents Roy and Charlotte have written a blog that covers their experiences, including the medical chart (cliff notes version), multiple mis-diagnoses, more hospitals than your average medical student will see over the course of their education, and, for the last year, intimate and personal narratives about making the decision to try an experimental treatment - stem cell transplantation - in the hopes of a cure.

It's worth a read, for those of you interested in narration, or even decision-making processes parents go through for their children.

On Hours

A Book of Hours is a kind of medieval prayer book.  They are often quite beautiful, as some of the existing versions were owned by affluent persons and families, such that the pages or cover may be gilded, or inscribed with beautiful artwork and filigree.

For somewhat unfortunate reasons, I was thinking of prayer in context of moral luck when reading Carey Cuprisin's post on the difficulty of satisfying on-call requirements.  Though he is primarily focused on such requirements for ER physicians, the problem, as he touches on, goes beyond ER physicians to residents in general.

Cuprisin says:

Everyone who knows me knows that I hate call -- give me the power to change one thing in medical training and it would be this. Residents are on-duty without sleep for far many hours in a row. The threat of federal legislation a few years back led the ACGME to implement an 80-hour work week rule, but this rule is often violated, and the rule itself isn't strong enough. Believe me, you can be worked beyond physiological reason under the current 80-hour rule.

Watching my older brother go through a surgical residency convinced me of the serious deficiencies in the way residents are trained.  About six years ago, I was excited to learn that several antitrust suits had been filed against the ACGME.  These suits were all settled fairly quietly, with no large-scale change in the way the residency programs are administered by the ACGME.

Whether the ACGME is guilty of antitrust violations is a complicated inquiry, but I continue to believe that some of the problems that residents face -- including the problem of hours that Cuprisin mentions -- are connected to the specific employment features of the residency programs.  How, after all, does one become a resident? By applying through the ACGME for certain residencies, and then being matched, primarily.  How else could a medical student become a resident? Virtually no other way.  Hospitals need residents, for a variety of different reasons.  The idea here is that the ACGME is the administrative body that controls access in a bidirectional manner -- both for the medical students seeking residencies, and for the hospitals seeking residents.

Arguably, if the residency system were immediately scrapped, hospitals would have some other options for filling the needed positions.  This is not to suggest that doing so would be easy; quite the contrary, it might darn well be impossible.  But at least in theory, the hospitals have other options -- they can hire more physicians, increase their recruitment of qualified foreign physicians, utilize allied health professionals (like nurse practitioners or physician assistants) more, etc, etc.

But the medical students have only one path open to them for their required training: the ACGME's medical residency program.  This means that they have virtually no bargaining power whatsoever.  The labor market for medical students who wish to become practicing physicians is decidedly non-competitive.  It is not a free and open market.  Medical students seeking residencies cannot bargain for better pay, more enhanced benefits, or, and here is the kicker, better hours. 

I remain convinced that a systemic part of the problems in the on-call system that attends many medical residencies in the U.S. can be traced to this fundamental inequality in bargaining power that medical students have.  Indeed, unequal power dynamics have a long history in medical training, and I think it would be unwise to dismiss such influences out of hand as contributing to the problems Cuprisin writes of.

Now, this is not to suggest, in any way, that the ACGME program is violating or has ever violated antitrust law.  Antitrust law is tricky stuff.  But I do think there are some competitive imbalances facilitated by the residency system, and that these imbalances may contribute something to the problems some residents face in terms of hours.  And of course, hospitals have economic incentives that create friction against residents' obtaining higher pay and less hours.

There are myriad other factors contributing to this problem, of course, not least of which is the culture of medical training, one in which both attendings and residents participate, as Cuprisin notes:

The most fascinating thing to me about the whole thing is the seeming complicity of the residents. Panda Bear describes it thusly: "their thinking is cluttered with duckspeak from the medical establishment which not only hides the reality of the situation but sets the conditions of any potential debate to preclude anything but the party orthodoxy." Even if you don't agree that the residents are brainwashed, it's clear that they aren't the ones pushing for a more rational and physiologically sound schedule.

Finally, I'd like to suggest that the stakes of this discourse are quite high.  The more we learn about medical error, the more we discover that such errors occur with alarming frequency and higher-than-suspected severity.  There are numerous articles assessing the correlation between lack of sleep, fatigue, and medical errors, the majority of which unsurprisingly find a statistically significant positive correlation.  A 2004 report of the National Institute for Occupational Safety and Health found that medical errors were decreased when work schedules for interns were limited.  However, as Cuprisin suggests, restricting the hours is an important step, yet if unaccompanied by an assessment of the cultural practices that animate the grueling schedule, may not work the needed changes.  He concludes: "we should be asking: what kind of evidence must we have before we take action to solve the problem?"       

UPDATE: More dialogue from Cuprisin here.  I'm not going to excerpt anything, but he makes a number of excellent points with which I agree.  Go read the whole thing.

Insurance, Justice, and Access to Care

There's a sentiment that I often hear regarding the private health insurance market.  A given insurer will act in such a way that results in a denial of coverage (or a decision not to insure a putative subscriber).  Of course, such behavior is entirely predictable for anyone who knows anything about insurance given that insurers have significant incentives to limit losses and payouts wherever possible.  Naturally, the mere fact that as rational maximizers of utility, insurers will seek to limit their exposure whenever and wherever possible as market conditions allow does not thereby imply that any particular limitation is ethical or reflects a just allocation of resources.

The sentiment often criticizes the insurer's decision as unjust insofar as it creates substantial barriers to care for the party affected.  There are myriad examples of this phenomenon.  I have surveyed the story of HDT/ABMT on this blog, and this is one example.  Women with advanced breast cancer sued their HMOS for denying coverage for HDT/ABMT on the grounds that it was experimental.  Given that the procedure is expensive, this denial created a significant barrier to that care. 

Yet, there is always something that has bothered me about the argument that the private insurers' attempts to limit the care they must cover reflect an unjust allocation of resources.  Namely, where did the idea ever come from that the private health insurance market is the means to creating access to care? The history of the rise of MCOs and HMOs easily puts the lie to this notion.  The best article I have read on this recently is Allen Buchanan's Rationing Without Justice, But Not Unjustly, 23 J. Health Politics, Policy, and Law 617 (1998).  Buchanan argues that many of the common criticisms directed at private insurers are erroneous insofar as they seem to presume that private insurers ought to facilitate access to care.  In point of fact, this is not why MCOs and HMOs profligated proliferated, and there is little reason to foist such a duty on private insurers when as for-profit corporations, duties of social justice do not seem to be their primary raison d'etre.  Note that this doesn't mean such corporations have no social responsibilities; it only means that their primary responsibility is not to allocate scarce health care resources according to the requirements of social justice.  The MCOs were never intended to mediate the problems of justice and health care.

Of course, this argument cuts both ways.  On the one hand, it suggests that many of the most common criticisms of the private insurance market are questionable.  On the other hand, where private corporations are not fairly tasked with the duty to allocate scarce health care resources justly, it also suggests that relying on private resources to maximize justice is also questionable.  This is partly what Buchanan argues in his contention that the common, misguided criticisms of MCOs obscure the larger issue: that as a society, the U.S. has not committed to answering the fundamental questions about justice and the allocation of scarce health care resources.  As a society, we have not devised any system that is expressly intended to allocate health care justly.  Unsurprisingly, then, the 'system' we do have does a markedly poor job of meeting what many perceive as the demands of justice.

Thoughts?

UPDATE: Frank Pasquale over at Concurring Opinions touches on insurance and access to care from a personal narrative.  As the Professor might say, "highly recommended."

Conference on Jewish Ritual, Reality, and Response at the End of Life

Duke University's Institute on Care at the End of Life is sponsoring the 2nd Magnified and Sanctified Conference: Jewish Ritual and Response At the End of Life.

The conference features Rabbi Elliott Dorff as keynote speaker, and aims to "explore Jewish traditions and practices around illness, death and grieving -- and learn to translate that understanding into better end-of-life care."  Rav Dorff is an important scholar on Judaic studies of illness and medicine, as well as Jewish medical ethics, and the conference sounds fascinating and worthwhile.

The one-day conference will take place on May 31, 2007.

Who's Who: Petrarch

Today's entry in Who's Who in the Medical Humanities is Francesco Petrarch, often referred to as the father of humanism.  Biographical details come from the Catholic Encyclopedia.

Petrarch was born in 1304 in Arezzo, Italy.  His father Petracco was a clerk at one of the courts of justice in Florence, but was banished in 1302 along with the other White Guelphs.  Petrarch was raised mostly at Pisa and Avignon, and, like so many of the humanists, trained in the law at Montpellier and more prominently at Bologna.  He found the practice of law tiresome, however, and after his father's death in 1323, returned to Avignon and took minor orders, where it is said that he met the love of his life, the lady Laura.

By 1330, Petrarch commenced a period of wandering, which he documented in his initimable epistolary form.  He increasingly sought out "lost" ancient texts, many of which he translated, and earned enough fame that he was publicly crowned as poet and historian of Rome in 1341.  He also befriended Boccaccio, and their narratives regarding the Black Death are among the most illuminating of the ethos of the time.  Says Petrarch in a letter to his brother who was the lone survivor of 35 in his monastery at Monrieux,

My brother! My brother! My brother! A new beginning to a letter, though used by Marcus Tullius [Cicero] fourteen hundred years ago. Alas! my beloved brother, what shall I say? How shall I begin? Whither shall I turn? On all sides is sorrow; everywhere is fear. I would, my brother, that I had never been born, or, at least, had died before these times. How will posterity believe that there has been a time when without the lightnings of heaven or the fires of earth, without wars or other visible slaughter, not this or that part of the earth, but well-nigh the whole globe, has remained without inhabitants. When has any such thing been even heard or seen; in what annals has it ever been read that houses were left vacant, cities deserted, the country neglected, the fields too small for the dead and a fearful and universal solitude over the whole earth?... Oh happy people of the future, who have not known these miseries and perchance will class our testimony with the fables. We have, indeed, deserved these [punishments] and even greater; but our forefathers also have deserved them, and may our posterity not also merit the same...

Though, as ever, something pains me in attempting to say anything meaningful about such a humanist in the truncated form of a blog post, part of what makes Petrarch so significant for the modern-day humanist is contained in this excerpt: the reference to Cicero.  I have tried to explain in this series of posts that a crucial part of the studia humanitatis was the focus on classical sources.  Though some have described this as a rediscovery of antiquity, Bouwsma wryly remarks in his edifying pamphlet The Culture of Renaissance Humanism that this can hardly be correct insofar as the ancient sources never really disappeared from view.

The enduring and extant trope (advanced most influentially by Burckhardt) of seeing the Middle Ages as a benighted time that gave way to the flowering of culture in the Renaissance is simply unsustainable for countless reasons, among them that quite profound "flowerings" occurred during the Carolingian and the Twelfth Century Renaissances (The fact that these movements are described as "Renaissances" underscores the point).

Nevertheless, it certainly seems accurate to suggest that something remarkable was going on with the late medieval and Renaissance humanists, and it is equally accurate to identify an important role for Petrarch in that process.  Part of what Petrarch sought in his search for the edification of the ancients was guidance in the cultivation of virtu in the individual.  Context is important here; and while a late humanist like Montaigne was more removed from the influence of high Scholasticism on learning and culture, an early humanist like Petrarch was educated and lived while that influence was, if not at its apex, certainly remained pervasive.  The Scholastic emphasis on logic and form encouraged use and reflection upon abstractions that were of little relevance to the late medieval who lived outside the traditional centers of learning (monasteries and universities).

Petrarch turned to the ancient sources, then, at least in part with an eye to receiving instruction on how to cultivate virtue in daily life, on how to bring the educational project to life in life itself, to return to Plato's basic and resonant question: how should I live? It must be remembered that the studia humanitatis was first and foremost an educational program, with the goal, at least for Petrarch, of using the seven liberal arts in the instruction of excellence and virtue.  Where current academic instruction, at least at the postsecondary stage, is criticized as being removed from people's daily lives and practices, Petrarch's mission is a powerful reminder of the expansive possibilities that the humanities can facilitate.

Moreover, while it is serious overstatement, IMO, to argue that the Western concept of the self was born through the humanities, it seems accurate to contend that Petrarch and many of the other humanists emphasized the significance of education on the self, of the importance of arete for the individual.  In a time where the pervading ethos was one of order and stability, where individualist pretensions to social mobility and improvement would be met with disbelief, if not outright suspicion and hostility, the importance of emphasizing the possibility of "self-improvement" through humanist education may be more apparent.

Finally, if one of the principal concerns of health care experiences in the U.S. is that they can be dehumanizing and impersonal, taking instruction from Petrarch in terms of medical education may be worthwhile.  Understanding that education can -- should? -- be used in the cultivation of individual virtue, and in making such a project accessible and meaningful in one's daily practices seems at least worthwhile and arguably a great deal more than that.

Ad fontes!

Generic & Brand-Drug Agreements to Delay Market Entry

Jayne Juvan has several interesting posts (can't find permalinks) relating to the possibility of legislation prohibiting negotiations between brand-drug and generic manufacturers that have the objective of delaying the latter's entry into a given therapeutic market. 

Consumer group advocates have argued that the current system favors both generic and brand name companies while detrimentally impacting consumers who are forced to front the high cost of brand named drugs while the delay is in effect.  Others, such as Bill Tauzin, a former Republican congressman from Louisiana, believe that such deals are actually pro-consumer.  In the Bloomberg article, Tauzin is quoted as saying that the payments "can benefit consumers'' by ending costly patent litigation that can cause longer delays in marketing generic drugs and can exhaust the litigants' "valuable resources." 

I know some, but not a great deal, about antitrust, but there is a fairly extensive argument in the literature suggesting that antitrust law ought to be viewed contextually, at least in part according to the enforcement priorities of the particular administration charged with applying the laws. 

*Shameless Plug*: I've written about this precisely in the context of the types of deals Juvan is noting.  In the paper, I examine how the post 9/11 context influenced such deals particularly with respect to Cipro (which regularly made national headlines as a frontline treatment for anthrax bioterror attacks).  Details on exactly how such deals delay market entry is also covered, as is the intersection between the innovation incentives of the patent system and the anticompetitive ideals of the antitrust laws (all examined in social context). 

I ultimately conclude that such agreements are anticompetitive.  Thoughts?

UPDATE: Thanks to Jayne for the kind words.

New Paper on Placebo and Therapeutic Deception

Via the Professor comes a link to a new paper by Adam Kolber on placebo and the therapeutic deception (to be distinguished, one would suppose, from the therapeutic misconception).  Here's the abstract:

Few medical treatments help as many people as cheaply and as safely as mere sugar pills. To use such placebos most effectively, however, doctors must deceive patients as to the nature of their treatment. While placebo deception is surprisingly common, its legality has rarely been tested. In November 2006, the American Medical Association (“AMA”) adopted a new ethics provision categorically prohibiting doctors from using placebos deceptively. In so doing, the AMA shifted the legal landscape, making it almost certain that courts will decide that placebo deception violates informed consent requirements.

I argue that the AMA's new policy is overbroad, insensitive to patient preferences, and likely to have unforeseen consequences. Rather, deceptive placebos should be treated as scarce medical resources - used sparingly but not categorically prohibited. While deception is often exploitative, therapeutic deception benefits the deceived and should not be prohibited by broad-brushed regulation.

I have not read the article yet, so I'll refrain from commenting on it until then, so to be continued . . .

Cadbury

By far the most challenging aspect of this blog thus far has been keeping my own personal pursuits, character, and interest relatively separate from the tenor of the posts and the blog itself.  While subjectivity is very important to me, such that I recognize that my own personal voice is absolutely expressed by and in the posts I author, I have nevertheless endeavored to make this as much a blog about the medical humanities as possible (as opposed to more of a live journal type format).  Privacy considerations for my peers and colleagues contributed to this approach.

But, as ever, the personal and the public spheres remain so deeply enmeshed.  This is arguably something most humanists, at least those who perceive(d) the importance of practices and intersubjectivity, would likely find none too controversial. 

Yesterday I arrived home to find our beloved middle dog Cadbury, aged 7 years, dead in the kennel he shares with his older brother Basil the Maltese (11).  Cadbury was diagnosed with a lethal cancer, a hemangiosarcoma (blood vessel cancer) over two months ago.  This cancer is aggressive, invasive, and incurable.  Most dogs die from hemangiosarcoma within 3 months of diagnosis.

Death, illness, some of the subjects that merit discourse on this blog, are thus enmeshed in my personal life.  In any case, without meaning to intellectualize Cadbury's death, I did remark to my wife today how much thinking about animals informs our discussions of humans, health, and illness.  Below the fold is a picture of Cadbury. 

Et via vix tandem voci laxata dolore est.

"And at length and with difficulty is a passage opened by grief for words." 

--Aeneid, xi. 151

(as quoted in Montaigne, Of sorrow, Charles Cotton trans.)

UPDATE:  More discussion here (not related specifically to Cadbury!)