Medical Humanities Blog

On Nursing and Health Care Reform

Longtime reader of MH Blog Annie has an excellent post up at her (group) blog challenging what she perceives as the tendency to discuss health care reform and policy without any mention of nursing and the role of nurses in a new health care regime.  Some excerpts:

Some of the wittiest and most insightful policy thinkers and writers have been discussing where to begin on US healthcare system reform in light of the economy and likely future.

I’ve been reading and doing my routine hair-pulling exercise of having the Google search feature looking for for any mention of nurses or nursing.  As always, the result is zero across all authors, commenters and media venues.

With almost three million registered nurses in the US providing about 95% of all reimbursed health services, how can anyone argue for healthcare system reform while ignoring the largest stakeholder and the profession which directly impacts patient outcomes? 

Indeed.

Her post is chock-a-block with links and is a must-read. 

(Navel-gazing Moment: Admittedly, we do not nearly do justice to the import and role of nursing within the medical humanities here on MH Blog, though, as a somewhat feeble defense, I will note that a great many topics of relevance to the MH receive short shrift on this blog.  Such is an opportunity cost of devoting oneself to interdisciplinary work, which is why I have always tried to note the importance of guest-bloggers to MH Blog). 

On Place as a Determinant of Health

The RWJF Commission to Build a Healthier America, which we've touched on here, recently conducted in Philadelphia a second public hearing related to the way in which place (i.e., communities, houses, neighborhoods) determines health.  A primary objective of the Commission is to explore the determinants of health beyond access to acute care, which obviously implicates the SDOH.  The press release notes:

Research shows social and economic conditions of neighborhoods are linked with a range of health conditions, including mortality, overall health status, chronic conditions, health behaviors, disability, mental health, birth outcomes, injuries and violence. Poor quality and inadequate housing also contribute to health problems such as infectious and chronic diseases, injuries and poor childhood development. In fact, where and how people live, learn, work and play has more impact on their health than medical care.

Indeed.  On the Commission website, you can download two issue briefs addressing the role of housing and neighborhood on health.  The Commission is doing some important work, both substantively and by signaling (finally!) that stakeholders interested in public health policy cannot ignore the robust evidence demonstrating that social and economic conditions are primary determinants of health.  I encourage anyone interested in these issues to make use of the Commission resources.

The next public hearing will be held in Denver in December 2008.

Health Wonk Review

Joe Paduda over at Managed Care Matters has done a yeoman's job compiling the latest Health Wonk Review.  I hesitate to quibble with his characterization of my entry, knowing the amount of work that goes into the Review, but I did want to say something further about prevention.  Paduda writes:

Daniel Goldberg's contribution provides much-needed perspective on one main component of health reform - the claims for and potential benefits of 'prevention'. It may not be all its cracked up to be.

The point I was trying to articulate is that a certain conception of prevention, one based on a social, public health model, is desperately needed if improving population health is the objective.  It is all that it is cracked up to be, and then some.  The concept of prevention resembling more closely an acute care, medical model, may be important for population health in its own right, but in my opinion is not based on evidence as compelling as the SDOH evidence base supporting the public health conception of prevention.

Thoughts?

On Conceptions of Prevention (Medical Humanities Lexicon)

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

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

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

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

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

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

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

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

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

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

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

On Causality and Mental Illness

Those of you who followed Patrick's fascinating post (and the debate that ensued in the comments) on causal models of psychiatry and mental illness might be interested in the abstract of this dissertation:

In contemporary biological approaches to psychiatry it is rarely questioned that psychiatric disorders stem from biological "dysfunctions". This assumption appears to be confirmed by the fact that biological research has been successful at uncovering diverse biological disparities between the brains of persons with mental illnesses and normal controls. However, the fact that something is different or unusual does not mean it is dysfunctional. The thesis of the dissertation is that there is little warrant for the claim that psychiatric disorders stem from biological dysfunctions. This prompts a question of definition: what does it mean to say that something--e.g., a given part of the brain or nervous system--is "functioning properly" or that it is "dysfunctional"? The dissertation argues that the theory of function appropriate for psychiatry is one that holds that the function of an entity consists in that activity that, in the past, contributed to the differential persistence or reproduction of that entity or type of entity. A consequence of this view is that just because something is not adaptive in a given environment, it is not necessarily dysfunctional. Finally, the dissertation examines two major neurobiological perspectives on schizophrenia--a neurochemical perspective and a neurodevelopmental perspective. From a neurochemical perspective, it argues that even if the dopamine system is abnormal in schizophrenia, it is not dysfunctional. It also shows that on certain neurodevelopmental hypotheses, schizophrenia could be said to stem from a biological dysfunction, but on other neurodevelopmental hypotheses, it could not. The fact that there is currently not enough information to decide which of these multiple hypotheses is correct means that there is currently little warrant for saying that schizophrenia stems from a biological dysfunction. Since this has been shown to be unwarranted through detailed analysis of some neurobiological examples, then it is reasonable to suspect that careful attention to neurobiological details associated with other mental disorders might reveal the same thing. Consequently, it should not be assumed that psychiatric disorders in general stem from biological dysfunctions on the part of the brain unless there is evidence for this conclusion other than the existence of biological abnormalities.

(h/t H-SCI-MED-TECH listserv)

The debate between Patrick and myself referenced below quickly morphed, in my view, to a discussion about disease causality, which is really the crux of the matter, in my view.  What does it mean to say that biological factors cause illness? More to the point, what are biological factors? Can these factors be separated from social, cultural, and environmental factors? One of the most important insights of Lewontin's work is what he terms the ideology of biology, the idea that biological entities exist in a metaphysical sense apart from the social and cultural worlds we inhabit.  Lewontin argues that this view is ideological in the sense that it is poorly supported by our understanding of what biology (i.e., life) actually consists of.

Nancy Krieger makes a similar point in her work on the effects of racism on health (that biological "causes" of illness are irreducibly social, that we bear the imprints of our social lives in our embodies selves).  This material is briefly addressed at the beginning of Unnatural Causes, and should also go some length to explaining why I am partial to a phenomenological account of illness in general, but mental illness in particular.

For those who doubt the significance of this issue, just take a look at this recent NY Times article, and Philip Dawdy's analysis at Furious Seasons.  The Times article is just disastrous for a variety of reasons related to this discussion on causality, some of which Dawdy notes.  This emphasis on discrete biological entities as causes for mental illness is, IMO, part of a larger (post-Enlightenment) focus of scientific and medical culture on these discrete causes, which really took off during the bacteriological revoultion, and has recently transferred to discourse on genes.  For those interested in exploring this issue more, I heartily recommend Sylvia Tesh's work.

The key is that there is a great deal at stake in the causal attributions we make as to disease and illness.  These attributions also have a profound effect on all manner of social and cultural issues, including disparities, stigma, and justice.  The latter is easily demonstrated by the longstanding tradition of blaming immigrants and foreigners for causing outbreaks of infectious disease.  How -- and to whom -- we attribute illness and disease says a very great deal about the social and cultural fabric of any given society.  No wonder some medical anthropologists argue that by studying the meaning of disease in any given culture, we can learn virtually anything that matters to the particular culture in question.

Thoughts?

On Measurement

One theme I find myself repeatedly returning to in thinking about the medical humanities is the idea that many phenomena and experiences that have great meaning are simply not susceptible to (quantifiable) measurement.  The history of quantification in the West is, of course, deeply intertwined with the history of objectivity, and both are highly relevant to my own (dissertation) work on pain.  As many have observed, phenomena that are not reducible to discrete, measurable units are frequently degraded in Western discourse, and particularly in scientific and biomedical discourse.  In short, if it can't be measured, calibrated, or counted, it is often deemed to be of comparatively little merit.

Even the most basic efforts to think about what it might be like for a human being to experience illness should suffice to show that certainly not all that is meaningful to humans about health, illness, and suffering can be measured and counted.  Yet, there is excellent evidence that such subjective phenomena and experiences are readily discounted or denigrated in scientific and biomedical culture.  I was struck by this again in reading the following editorial, which was jointly authored and signed by multiple editors of various history of science, medicine, and technology journals (and related interdisciplinary efforts, like science studies, social history, etc.).  I repost it here in full:

Journals under Threat: A Joint Response from History of Science, Technology and Medicine Editors

We live in an age of metrics. All around us, things are being standardized, quantified, measured. Scholars concerned with the work of science and technology must regard this as a fascinating and crucial practical, cultural and intellectual phenomenon.  Analysis of the roots and meaning of metrics and metrology has been a preoccupation of much of the best work in our field for the past quarter century at least. As practitioners of the interconnected disciplines that make up the field of science studies  we understand how significant, contingent and uncertain can be the process of rendering nature and society in grades, classes and numbers.

We now confront a situation in which our own research work is being subjected to putatively precise accountancy by arbitrary and unaccountable agencies. Some may already be aware of the proposed European Reference Index for the Humanities  (ERIH), an initiative originating with the European Science Foundation. The ERIH is an attempt to grade journals in the humanities - including "history and philosophy of science". The initiative proposes a league table of academic journals, with premier, second and third divisions. According to the European Science Foundation, ERIH "aims initially to identify, and gain more visibility for, top-quality European Humanities research published in academic journals in, potentially, all European languages". It is hoped "that ERIH will form the backbone of a fully-fledged research information system for the Humanities". What is meant, however, is that ERIH will provide funding bodies and other agencies in Europe and elsewhere with an allegedly  exact measure of research quality. In short, if research is published in a premier league journal it will be recognized as first rate; if it appears somewhere in the lower divisions, it will be rated(and not funded) accordingly.

This initiative is entirely defective in conception and
execution. Consider the major issues of accountability and transparency.  The process of producing the graded list of  journals in science studies was overseen by a committee of four (the membership is currently listed at http://www.esf.org/research-areas/humanities/research-infrastructures-including-erih/erih-governance-and-panels/erih-expert-panels.html). This committee cannot be considered representative. It was not selected in consultation with any of the various disciplinary organizations that currently represent our field such as the European Association for the History of Medicine and Health,  the Society for the Social History of Medicine, the British Society for the History of Science, the History of Science Society, the Philosophy of Science Association, the Society for the History of Technology or the Society for Social Studies of Science. Journal editors were only belatedly informed of the process and its relevant criteria or asked to provide any information regarding their publications. No indication was given of the means through which the list was compiled; nor how it might be  maintained in the future.  The ERIH depends on a fundamental misunderstanding of conduct and publication of  research in our field, and in the humanities in general. Journals' quality cannot be separated from their contents and their review processes. Great research may be published anywhere and in any language.

Truly ground-breaking work may be more likely to appear from marginal, dissident or unexpected sources, rather than from a well-established and entrenched mainstream journal. Our journals are various, heterogeneous and distinct. Some are aimed at a broad, general and international readership, others are more specialized in their content and implied audience. Their scope and readership say nothing about the quality of their intellectual content. The ERIH, on  the other hand, confuses internationality with quality in a way that is particularly prejudicial to specialist and non-English language journals. In a recent report, the British Academy, with judicious understatement, concludes that "the European Reference Index for the Humanities as presently conceived does not represent a reliable way in which metrics of peer-reviewed publications can be constructed" (Peer Review: the Challenges for the Humanities and Social Sciences, September  2007: http://www.britac.ac.uk/reports/peer-review).

Such exercises as ERIH can become self- fulfilling prophecies. If such measures as ERIH are adopted as metrics by funding and other agencies, then many in our field will conclude that they have little choice other than to limit their publications to journals in the premier division. We will sustain fewer journals, much less diversity and impoverish our discipline. Along with many others in our field, this Journal has concluded that we want no part of this dangerous and misguided exercise.

This joint Editorial is being published in journals across the fields of history of science and science studies as an expression of  our collective dissent and our refusal to allow our field to be managed and appraised in this fashion. We have asked the compilers of the ERIH to remove our journals' titles from their lists.

Hanne Andersen (Centaurus)

Roger Ariew & Moti Feingold (Perspectives on Science)

A. K. Bag (Indian Journal of History of Science)

June Barrow-Green & Benno van Dalen (Historia mathematica)

Keith Benson (History and Philosophy of the Life Sciences)

Marco Beretta (Nuncius)

Michel Blay (Revue d'Histoire des Sciences)

Cornelius Borck (Berichte zur Wissenschaftsgeschichte)

Geof Bowker and Susan Leigh Star (Science, Technology and Human Values)

Massimo Bucciantini & Michele Camerota (Galilaeana: Journal of Galilean Studies)

Jed Buchwald and Jeremy Gray (Archive for History of Exacft Sciences)

Vincenzo Cappelletti & Guido Cimino (Physis)

Roger Cline (International Journal for the History of Engineering & Technology)

Stephen Clucas & Stephen Gaukroger (Intellectual History Review)

Hal Cook & Anne Hardy (Medical History)

Leo Corry, Alexandre Métraux & Jürgen Renn (Science in Context)

D.Diecks & J.Uffink (Studies in History and Philosophy of Modern
Physics)

Brian Dolan & Bill Luckin (Social History of Medicine)

Hilmar Duerbeck & Wayne Orchiston (Journal of Astronomical History & Heritage)

Moritz Epple, Mikael Hård, Hans-Jörg Rheinberger & Volker Roelcke (NTM: Zeitschrift für Geschichte der Wissenschaften, Technik und Medizin)

Steven French (Metascience)

Willem Hackmann (Bulletin of the Scientific Instrument Society)

Bosse Holmqvist (Lychnos)

Paul Farber (Journal of the History of  Biology)

Mary Fissell & Randall Packard (Bulletin of the History of Medicine)

Robert Fox (Notes & Records of the Royal Society)

Jim Good (History of the Human Sciences)

Michael Hoskin (Journal for the History of Astronomy)

Ian Inkster (History of Technology)

Marina Frasca Spada (Studies in History and Philosophy of Science)

Nick Jardine (Studies in History and Philosophy of Biological and Biomedical Sciences)

Trevor Levere (Annals of Science)

Bernard Lightman (Isis)

Christoph Lüthy (Early Science and Medicine)

Michael Lynch (Social Studies of Science)

Stephen McCluskey & Clive Ruggles (Archaeostronomy: the Journal of Astronomy in Culture)

Peter Morris (Ambix)

E. Charles Nelson (Archives of Natural History)

Ian Nicholson (Journal of the History of the Behavioural Sciences

Iwan Rhys Morus (History of Science)

John Rigden & Roger H Stuewer (Physics in Perspective)

Simon Schaffer (British Journal for the History of Science)

Paul Unschuld (Sudhoffs Archiv)

Peter Weingart (Minerva)

Stefan Zamecki (Kwartalnik Historii Nauki i Techniki)

(h/t H-SCI-MED-TECH listserv)

UPDATE 10.10.08: The Chronicle of Higher Education reports, and includes this interesting quote from "Michael J. Worton, vice provost of University College in London and a professor of French literature, who serves on the project's steering committee:"

"People may not like the results," Mr. Worton said. "They may not like the process. But the process is going to go ahead, because there is so much commitment in Europe to its going ahead."

I leave the able readers of MH Blog to form their own opinions.

On Values & Disability

At Crooked Timber, Michael Bérubé has a typically interesting post regarding his experience at this fascinating conference on ethics & cognitive disability.  The post is long, but is well worth the read, as are the comments.  He notes several exchanges he had with scholars voicing well-known -- and often controversial -- positions on disability, including Martha Nussbaum, Peter Singer, and Jeff McMahan.  Some excerpts:

And on Friday and Saturday, I finally came face-to-face with people (namely, Singer and Jeff McMahan) who believe that (to put it clumsily) cognitive capacity is a valid metric of moral status, so that (in McMahan’s example) if we agree that it is more consequential to kill a human being than to kill a squirrel, and if we don’t believe in stuff like “the soul” or “the divine spark” or “the ineffably human,” it follows that it is less wrong, all other things being equal, to kill someone with severe cognitive impairments than to kill you or me.

As I have tried to document here on MH Blog, moral arguments have serious policy implications; so whatever the merits of such arguments (and the extent of those merits is obviously important), that does not exhaust the social, cultural, and political reasons why so many disability scholars and activists are so concerned with the making of such arguments.  The point here is not that such arguments ought not be made; I am something of a free speech militant, so I heartily reject that idea.  Rather, the point is that such arguments, whatever their merits, are historically and conceptually linked, whatever the best intentions of their proponents, to a series of troubling policies and circumstances that have profoundly impacted the lived experiences of disabled persons.  All the more reason to tread carefully and responsibly -- which involves hearing the views and perspectives of those marginalized communities directly implicated by such arguments -- in voicing them.

The medical humanities are, if nothing else, about rhetoric, and one of the key ideas as to rhetoric is that res and verba are not equivalent, but, perhaps paradoxically, virtuous scholarship and practice is only possible by thinking carefully about the use of language to virtuous ends.

Bérubé continues:

After Jeff McMahan’s talk, in which he’d calmly pointed out that no one had yet offered a cogent, rational argument for why people with severe and profound cognitive impairments, who (allegedly) cannot make complex plans or have meaningful goals or understand themselves as selves should be considered to have the same moral status as other humans, I got up and said this:

Jeff, I think the reason you haven’t yet heard a cogent argument against your position is that you won’t accept a pragmatist argument as cogent.  But let me give it a try.  I’m not going to rely on concepts like ‘intrinsic human worth,’ but I can try to learn a little from history.  And let’s imagine that we might have learned—very slowly, very gradually, because as a species we’re really not very bright about such things—that every attempt to banish some humans from the category of rights-bearing beings, every attempt to lop off some members of the human family, has had vicious and catastrophic results.  So let’s say that we’ve learned to err on the side of caution, and include every human born, just to avoid these past catastrophes.  And then let’s say that you and Peter come along and say, “wait, that’s too exclusive—you shouldn’t be thinking only about our species, you should be thinking about sentience, and the capacity for suffering, among animals as well.”  And we say, “hmmm, interesting.  Brand new rationales!  OK, we’ll think about them.”  Because for a pragmatist, that’s really good enough.  But for you, it isn’t, and I really don’t know why.

[ . . .]

So here’s the problem, dear readers—if you’re still my dear readers after all this time.  Some people think, when they come up with their moral schemata, that they’ve reached bedrock—that they’ve finally found the solid principles on which a properly moral philosophy should rest.  They’re uncomfortable with the idea that we’re working on intuition—or sorting among competing and contradictory moral intuitions.

To this I would simply say that we certainly need not face a false choice between moral principlism and moral intuitionism.  There are those, like myself, quite sympathetic to the critique of moral principlism but who maintain nevertheless that ethics need not be reduced to mere intuitions.  (Short take on intuitionism: our intutions are important markers of right-making and wrong-making features, but utterly fail as criteria of right and wrong.  This matters only if we think we need such criteria, of course).

This gets into much of the current discussion regarding the merits of moral principlism, which is a key (and to my mind, important) debate that people interested in moral philosophy and applied ethics are currently having.  Personally, I find moral principlism lacking for a variety of reasons, but I think there is much more to the moral life than our intuitions about right and wrong.

In any case, go read the whole thing, and the comments are worth examining as well.

On the Blogosphere

Several new or recently formed blogs have come to my attention here, and I just wanted to mention them briefly.

The BMJ journal Medical Humanities has maintained an excellent blog for some time, though I have been remiss in not linking to them until now.

The BMJ journal Journal of Medical Ethics has similarly added a blog (h/t Global Bioethics Blog).

Last, Adam Kolber over at the Neuroethics & Law Blog brings word of the Law & Biosciences Blog (out of Stanford), which touches on many issues relevant to neuroethics & the medical humanities.

All three are recommended.

On Genius

The MacArthur Foundation has announced the recipients of its so-called "genius grants."  Among the winners is Nancy Siraisi, an historian of medicine who works primarily on medicine and rhetoric in medieval and Renaissance periods.  Given the obvious interest on MH Blog in unpacking the relevance of medieval and Renaissance humanism for thinking about contemporary issues in health and illness, I am well-acquainted with her work; in fact, I will be relying on it in preparing my dissertation.

I particularly like Siriasi's work on what history and rhetoric meant to Renaissance healers, because some of the most important themes of the humanists relate to their own historical consciousness and the use of rhetoric in the service of virtue.

For those interested, here is a Google Scholar search for her publications.  Her work on Vesalius, arguably the most important medical humanist in the last five hundred years, is particularly relevant for students of the medical humanities.

Congratulations to Dr. Siraisi.

(h/t Kathy G.)

On Equity & the SDOH

Stuart Rennie over at the always-fascinating Global Bioethics Blog notes some problems with the recently released Final Report of the WHO Commission on Social Determinants of Health:

That there are vast differences globally in infant and maternal mortality or life-expectancy has growing empirical support. And this situation is intuitively unjust. But it is hard to articulate precisely what makes it unjust, and what 'doing justice' might mean. The title of the WHO report would indicate that justice would be served by narrowing the differences, but the nature of this goal is unclear. Raising (say) the life-expectancy of Zimbabweans and lowering that of Swedes and Danes? That seems unfair to the latter. Raising all life-expectancies to that of Japan (82 years)? That would be a more positive way of doing justice, but the idea of doing so 'in a generation' seems wildly optimistic.

Though I'm less dubious than Rennie that it is difficult to articulate a conception of justice that captures the ethical and policy import of the Report, Rennie's point that equity is undertheorized in the Report is more concerning, IMO:

I have only looked over the report briefly so far, but as far as I can see, there is no ethical discussion about the meaning of 'equity' as a goal or ideal (the word 'ethics' or 'bioethics' only appear a couple of times). The concept is used throughout, but not defined or submitted to any serious analysis.

I also am only wading through the Report now, and as important as it is, I agree that the value of equity is seriously undertheorized.  Given that Amartya Sen is one of the commissioners, I am more than a little disappointed at this.  Readers of this blog know full well how important I deem the evidence on SDOH; but positive description of the effects of socioeconomic disparities are insufficient without an extensive normative analysis of how that evidence is to be incorporated into ethical public health policy.  Failure to do so runs the risk of the naturalistic fallacy, which, as I've noted on this blog, is all too common a flaw in discourse on public health policy. 

As Rennie puts it, "if you don't know where you want to go, it is hard to know where your analyses and interventions are supposed to be taking you."