Medical Humanities Blog

Call for Papers (New Journal): Narrative Inquiry in Bioethics: A Journal of Qualitative Research

A new journal published by JHU Press has put out its initial Call for Papers.  The journal is entitled Narrative Inquiry in Bioethics: A Journal of Qualitative Research.  All three of these descriptors are central to the medical humanities, so this looks to be an exciting and promising journal.  Here are some details on the approach and scope of the journal:

Narrative Inquiry in Bioethics (NIB) provides a forum for exploring current issues in bioethics through the publication and analysis of personal stories, qualitative and mixed-methods research articles, and case studies. Articles may address the experiences of patients and research participants, as well as health care workers and researchers. NIB is dedicated to fostering a deeper understanding of bioethical issues by engaging rich descriptions of complex human experiences. While NIB upholds appropriate standards for narrative inquiry and qualitative research, it seeks to publish articles that will appeal to a broad readership of health care providers and researchers, bioethicists, sociologists, policy makers, and others.

Thick content, indeed!

And here are the guidelines for submission.  NIB has planned three symposia to kick things off for Volume 1:

Issue 1, July 2011: Living with Conflicts of Interest in Medicine (Symposium Editor, James DuBois)

Preference given to story proposals received by October 15.

Issue 2, September 2011: Nursing Aides in Long-Term Care Facilities (Symposium Editor, Amy Haddad)

Preference given to story proposals received by October 15.

Issue 3, December 2011: Experiences of Hospitalized Psychiatric Patients (Symposium Editor, Charles Lidz)

Preference given to story proposals received by October 15.

Sounds terrific, so do consider submitting your work.

(h/t Lit&MED_ASBH listserv)  

On the Unbearable Oughtness of Health Policy (A Series)

One of the phrases I find myself using quite a bit on MH Blog and beyond is what I've referred to as "the unbearable oughtness of health policy."  This signifies the notion that allocating scarce resources to health -- which, as I have repeatedly noted here is both distinguishable from and not reducible to health care -- is always and forever a value-laden affair.  All of the descriptive analysis in the world, however critical it may be to informing moral discourse, cannot determine what is a just distribution of resources and capabilities related to health.  This is of course simply an instantiation of the naturalistic fallacy; "is" never determines "ought."

Along these lines, there is an outstanding new article on NEJM's Health Policy Forum tracking a similar line in reference to the recent brouhaha over changes in mammography screening guidelines recommended by the U.S. Preventive Services Task Force.  The article is entitled "Lessons from the Mammography Wars."  Here is an excerpt:

 In the case of any given patient, we must choose to treat or not treat, to screen or not screen. In an effort to help us make these choices, our profession is constantly trying to elucidate clear thresholds for intervention, such as the level of glycated hemoglobin or low-density lipoprotein cholesterol, age, or standard time intervals. What we often do not remember is that these thresholds — for example, an age of 40 versus 50 years or annual versus biennial routine mammography — are to some degree subjective and arbitrary. After all, scientific evidence can only help us describe the continuum of benefit versus harm. The assessment of whether the benefit is great enough to warrant the risk of harm — i.e., the decision of where the threshold for intervention should lie — is necessarily a value judgment. When either side in the mammography wars claims that the evidence suggests that women should or should not undergo routine mammography starting at the age of 40 years, they are deceiving themselves and the public about what the evidence can tell us. They are really just making different value judgments about where to set the threshold.

This is part of the reason the idea that evidence ever "speaks for itself" is nothing but a convenient fiction, although the fact that the fiction is so prominent a marker of epistemic validity is hugely significant in its own right (I have some work on the relation of this point to the history of objectivity in the West).

To their credit, the authors discuss in some detail the influence of money and conflicts of interest in the production of evidence and its interpretation:

But what if those experts are basing their recommendations on more than the interest of patients alone? In any other industry, we accept the idea as natural that those providing a service or product hold their own and their shareholders’ interests as a primary objective. Why have we failed to acknowledge that the same phenomenon occurs in health care? Although it is true that individual medical providers care deeply about their patients, the guild of health care professionals — including their specialty societies — has a primary responsibility to promote its members’ interests. Now, self-interest is not in itself a bad thing; indeed, it is a force for productivity and efficiency in a well-functioning market. But it is a fool’s dream to expect the guild of any service industry to harness its self-interest and to act according to beneficence alone — to compete on true value when the opportunity to inflate perceived value is readily available.

Indeed! The entire article is highly recommended.

Thoughts?

(h/t Health News Review Blog)   

On Principlism and Thin Content

Marvin J.H. Lee has a new article out in the September issue of the Journal of Medical Ethics entitled The problem of ‘thick in status, thin in content’ in Beauchamp and Childress' principlism.  Here is the Abstract:

For many, Thomas Beauchamp and James Childress have elaborated moral reasoning by using the four principles whereby all substantive problems of medical ethics (and of ethics more generally) can be properly analysed and cogent philosophical solutions for the problems can be found. It seems that their ‘principlism’ gets updated, with better features being added during the course of the six editions of Principles of Biomedical Ethics. Nonetheless, Beauchamp and Childress seem to have been losing their way when it comes to the common-morality justification, which is the epistemological (and perhaps metaphysical) backbone of their method, and this is shown more vividly in their most recent (2009) edition of Principles of Biomedical Ethics. The author points out what he calls the problem of ‘thick in status, thin in content’ in principlism. The problem exists because principlism cannot adequately explain how the prescriptive sense of common morality it supports is consistent with the existence of what Beauchamp and Childress call the ‘legitimate moral diversity in the world’. Because of this problem, first, the practical end that principlism allegedly accomplishes (ie, providing practical moral guidelines in a relatively ‘thick’ content, based on common morality) is frustrated, and, second, principlism makes itself the method of common morality de jure and of moral pluralism de facto.

Quite.  Readers of MH Blog may note similar sentiments to those expressed in this abstract in various posts.

The article is recommended.

On CVD, the Prevention Paradox, and Inequities

Simon Capewell and Hilary Graham have an important new article out in PLoS Medicine (full-text open access) entitled Will Cardiovascular Disease Prevention Widen Health Inequalities?

Here are the summary points:

• The primary prevention of cardiovascular disease (CVD) is dependent on the effective reduction of the major risk factors for CVD, particularly tobacco control and a healthier diet.
• The high-risk approach to prevent CVD typically involves population screening. Those exceeding a risk threshold are then given lifestyle advice and/or tablets to reduce blood cholesterol and blood pressure.
• Evidence suggests this high-risk approach typically widens socioeconomic inequalities. Such inequalities have been reported in screening, healthy diet advice, smoking cessation, statin and anti-hypertensive prescribing, and adherence.
• The alternative approach is population-wide CVD prevention. For example, legislating for smoke-free public spaces, banning dietary transfats, or halving daily dietary salt intake. Such strategies are generally effective and cost-saving; there is also increasing evidence that they can reduce health inequalities.
• We conclude that screening and treating high-risk individuals represents a relatively ineffective CVD prevention approach that typically widens social inequalities

This is a critical article.  It addresses one of the thorniest problems in public health ethics, Sir Geoffrey Rose's prevention paradox.  Namely, while many (most?) ethical frameworks would suggest health interventions be directed to the most disadvantaged, population health will be maximized by a directing interventions to the larger low-risk population.  In addition, targeting interventions at high-risk groups may widen inequities.

Big problems, obviously.  Because I have some work I am preparing for submission on these issues, I won't comment much more here.  But the article is highly recommended and the issue itself could barely be of greater significance to public health ethics and policy, in my view.

Thoughts? 

On the History of Intellectual Disability (and Paul Longmore)

Disability historian Paul Longmore, who died on August 9, penned this erudite review of Alison Carey's new history of intellectual disability in the U.S., entitled On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth-Century America.

Here is an excerpt from the review:

[Carey's] argument is rich and complex, too complicated to be summarized simply.  She shows that in every era ideas about intellectual disability and the experience of people with intellectual disabilities have challenged, conflicted with, or operated in tension with formulations of citizenship and rights.  Indeed, people with intellectual disabilities have typically been viewed as deficient for full citizenship, often as the opposite of the ideal citizen, and as not only unworthy of citizenship but also dangerous to the well-being of the community and nation.  Yet at the same time, American ideas about intellectual disability have never been permanently fixed. 
Instead, in each era they have been contested, and they have changed from one era to the next.  Despite professional attempts to define intellectual disability with scientific precision, the lived experience of people identified as having those disabilities has varied enormously depending on the historical moments in which they found themselves.  Because of those variations, at no time have Americans reached a consensus about the place of people with intellectual disabilities in society and the extent to which they could or should exercise rights.  Nondisabled opinion has ranged from demanding their total exclusion to accepting their full equality. 

This is a wonderful review, which manages both to educate this reader on some important aspects of 20th century American disability history, as well as offer some key methodological points regarding how to "do" mature and responsible history.  The review also successfully contextualizes the richness and promise of the book. 

The review is certainly recommended, and I'll let you know about the book just as soon as my book budget is replenished.

(h/t H-DISABILITY)  

On Victorian Disability

Speaking of disability history, the Victorian Review has a theme issue out on disability history.  There look to be a number of excellent articles.  Here is the TOC:

Forum: Victorian Prostheses

Genie Babb
The Prosthetic Body

Gregory Brophy
The Sphygmograph

Fiona Coll
The Victorian Automaton as Imaginary Prosthetic

Nadja Durbach
Baby Incubators and the Prosthetic Womb

Anna Henchman
The Telescope

Tamara Ketabgian
Calculating Divinity: Babbage’s Engine, Spiritual Intelligence, and the Senses

Ivan Kreilkamp
Anthroprosthesis, or Prosthetic Dogs

Don Randall
The Imperial Boy as Prosthesis
 
Articles

GUEST EDITORS: CHRISTOPHER KEEP AND JENNIFER ESMAIL

Esmail & Keep
Victorian Disability: Introduction

Martha Stoddard Holmes
“Happy and Yet Pitying Tears”: Deafness and Affective Disjuncture in Dickens’s “Doctor Marigold”

Neil Pemberton
Deafness and Holiness: Home Missions, Deaf Congregations, and Natural Language 1860–1890

Vanessa Warne
“To invest a cripple with peculiar interest”: Artificial Legs and Upper-Class Amputees at Mid-Century

Tamara S. Wagner
Home Work: The Ambiguous Valorization of “Affliction” in Charlotte Yonge’s The Pillars of the House

Karen Bourrier
“The Spirit of a Man and the Limbs of a Cripple”: Sentimentality, Disability, and Masculinity in Charlotte Yonge’s The Heir of Redclyffe

Eitan Bar-Yosef
The “Deaf Traveller,” the “Blind Traveller,” and Constructions of Disability in Nineteenth-Century Travel Writing
 
Reviews

Stefan Berger
Robert J. C. Young, The Idea of English Ethnicity

Gordon Bigelow
Julia M. Wright, Ireland, India, and Nationalism in Nineteenth-Century Irish Literature

Julie Codell
Lara Kriegel, Grand Designs: Labor, Empire, and the Museum in Victorian Culture

June Sturrock

Antonia Losano, The Woman Painter in Victorian Literature

Joy Dixon
Joanna Dean, Religious Experience and the New Woman: The Life of Lily Dougall

Vicki Macknight
Dinah Birch, Our Victorian Education

Lana Dalley
Krista Lysack, Come Buy, Come Buy: Shopping and the Culture of Consumption in Victorian Women’s Writing

_______________________

(h/t H-DISABILITY)

I apologize for the slow blogging of late.  I have been engaged in the process of settling in.  The rate of blogging should pick up in the near future.

On Job, Stigmatization, and Chronic Pain

Daniel S. Goldberg (East Carolina University) (yes, that's me) has a new article out in Perspectives in Biology & Medicine entitled, Job and the Stigmatization of Chronic Pain.  Here is the Abstract:

Many ethical and policy analyses of the devastating undertreatment of chronic pain leave unaddressed the role played by stigma, even though the notion that such stigma exists is well documented. This article examines the social and cultural roots of the stigma of chronic pain in American society. I document the long history of illness stigma in Western societies as a way of illustrating the power of this meaning-making construct, and I use the Book of Job as a framework for understanding the deep link between sin and suffering in the context of illness and chronic pain in the United States. Unfortunately, while illness stigma can be ameliorated, there is little evidence of such progress in the undertreatment and stigmatization of chronic pain sufferers, and I explain some of the reasons why the best evidence does not demonstrate much improvement. I conclude by sketching some recommendations for diminishing the stigmatization of the chronic pain sufferer, and warn that the focus on altering the opioid regulatory regime is unlikely to have the desired impact in reducing the suffering of millions of Americans.

As readers of MH Blog likely know, the undertreatment of pain in the U.S. is the subject of my dissertation, and is a topic I have been working on for almost a decade now.  This particular essay engages a topic that I could only touch on briefly in my dissertation, namely, chronic pain and stigma.  Stigma, of course, is a crucial theme for the medical humanities.

Interested readers wishing a electronic copy are welcome to contact me privately.

On Borderlands and the Medical Humanities

Harold J. Cook, prior Director of the Wellcome Trust Centre for the History of Medicine (UCL), and author of the indescribably wonderful book Matters of Exchange, has a fascinating article in the current issue of Medical Humanities.  The article is entitled Borderlands: a historian's perspective on medical humanities in the US and the UK.  There is no abstract, but here is an excerpt:

Medical Humanities has developed as an important pedagogical ideal, although it is not a research field, at least not yet. Anyone with clinical, administrative, or personal responsibilities for other people is well aware of a duty of care requiring judgement. Judgement is an attribute applying as much to values as to knowledge, an ability to take appropriate decisions attuned to circumstances of person, context and moment. What one knows and has experienced provides a necessary foundation for deciding a course of action. And when patterns repeat themselves again and again, judgements can become routine. But because judgement is in the end about what best course of action to follow on particular occasions for particular people, general rules and universal truths can ever only be important helps, never giving determinative answers about how to act. Put another way, judgement is not about drawing conclusions but deciding what to do. The duty of care requires the practitioner to decide not what is true but what is best, and with the views of those under care taken into consideration, too . . . The complexities and ambiguities of the human condition, then, inform medicine profoundly, and exploring them often goes by the term ‘medical humanities’.

Given that the subject is aimed at forming good judgement rather than informing the content of any particular field of knowledge, the medical humanities can have no unified research programme . . .

Cook's work is immensely important to both the history of medicine and the medical humanities, and this is a fascinating, succint piece on the history of the medical humanities in the U.S. and the U.K., and the possibilities and pitfalls of the field of inquiry (and I hope I say this, gentle readers not simply because Cook spends a paragraph discussing IMH, where I trained!).  But I admit that there are some points I might want to respectfully dispute.  For example, I am not sure I understand why it is that because of its focus on the formation of good judgment -- a characterization with which I agree -- the medical humanities can have no unified research programme.  

I do believe that the medical humanities, like the studia humanitatis itself, demands more of its practitioners than the accumulation of knowledge for its own sake -- whether this is a worthy objective or not -- but I do not see why research from an interdisciplinary perspective on the formation of good judgment is not possible or even unlikely.  But perhaps I am simply misinterpreting . . .

In any case, the article is, like anything Cook writes, well-worth reading in its entirety, and then, immediately, worth reading again.

On Global Justice and the Social Determinants of Health

Sridhar Venkatapuram has authored an article in the summer 2010 of Ethics & International Affairs (vol. 24, no. 2) entitled Global Justice and the Social Determinants of Health.  The ethical implications of research on the SDOH is at the core of my research agenda and remains, IMO, undertheorized (or so I shall argue in forthcoming presentations and papers).  In any case, the article is available full-text and is highly recommended.   

(h/t Equidad listserv)

On Three Dogmas of Bioethics and A Treatment

Angus Dawson (Keele University), one of the co-editors of the excellent journal Public Health Ethics, has a provocative and fascinating article in a recent theme issue of Bioethics devoted to the "future of bioethics."  The article is entitled The Future of Bioethics: Three Dogmas and a Cup of Hemlock.  Here is the Abstract:

In this paper I argue that bioethics is in crisis and that it will not have a future unless it begins to embrace a more Socratic approach to its leading assumptions. The absence of a critical and sceptical spirit has resulted in little more than a dominant ideology. I focus on three key issues. First, that too often bioethics collapses into medical ethics. Second, that medical ethics itself is beset by a lack of self-reflection that I characterize here as a commitment to three dogmas. Third, I offer a more positive perspective by suggesting how bioethics may benefit from looking towards public health ethics as a new source of inspiration and direction.

Highly recommended.  As readers of MH Blog are likely aware, I share many of Dawson's concerns regarding dominant discourse in Western bioethics.  I also share Dawson's interest and focus on public health ethics, although I have some reservations on the latter, particularly because the overlap between what seems to me to be the most pressing matters of population health (e.g., the social determinants of health, chronic, non-communicable disease, health inequities) and public health practice are not nearly as extensive as I would hope.

Thoughts?