Medical Humanities Blog

Slow Blogging Ahead

There may be some calm blogging seas ahead, as I'll be off at a conference for the next week.  I'll try to post when possible.

Articles of Interest

Several articles of interest:

Regulatory Innovation in the Governance of Human Subjects Research: A Cautionary Tale and Some Modest Proposals

Scott Burris (Law - Temple)

Regulation & Governance, Vol. 2, No. 1, pp. 65-84, March 2008

Abstract:

Under U.S. regulations known as the Common Rule, federally-supported human-subject research must be reviewed by an Institutional Review Board (IRB). The Common Rule system looks from a distance like an innovative instantiation of prescriptions for constitutive regulation and soft law, but in practice has grown into a self-referential, unresponsive and legalistic bureaucracy. The paper reviews the criticism of the system and discusses why it fails to regulate in an efficient and effective way, pointing in particular to the poor fit between the IRB and its assigned tasks. Turning to reforms, the paper uses the heuristic of regulatory space to describe the range of actual and potential regulators with the capacity to set standard, monitor compliance and discipline violators in the realm of research. Three essential conceptual changes are set out to frame the technical regulatory reform discussion: facing up to the built-in limitations of the IRB as an oversight body; narrowing the range of risks the system is tasked to control; and disentangling the conflicting regulatory logics of behavioral standard-setting and virtue promotion. It concludes with a roster of possible changes that would make the IRB a more responsive regulator, enroll a wider range of actors in the promotion of ethical virtue, focus resources on more serious risks, and address the structural causes of researcher misconduct.

There was much I liked about this article, though I certainly did not agree with all of it.  I personally am quite sympathetic to calls for a more thorough overall of the system by which we assess the ethics of human participants research.  Though Burris obviously perceives the importance of such ethics, at times he veers close to rejecting the entire project because of his dissent with the ways in which the system has been analyzed and construcuted through traditionally dominant bioethics paradigms.

As I've noted before, dissatisfaction with traditionally prevailing modes of bioethics -- in which I enthusiastically share --  hardly diminishes the importance of Plato and Aristotle's questions as applied to research: what is the good? How shall we live?

Still, Burris's take and recommendations are original, and there is no doubt such novel thinking is needed in thinking about the regulation and ethics of research.

Thinking Historically About Public Health

Alison Bashford (Univ. Sydney - History); Carolyn Strange (Australian National University)

Abstract:

This paper argues that analysing past public health policies calls for scholarship that integrates insights not just from medical history but from a broad range of historical fields. Recent studies of historic infectious disease management make this evident: they confirm that prior practices inhere in current perceptions and policies, which, like their antecedents, unfold amidst shifting amalgams of politics, culture, law and economics. Thus, explaining public health policy of the past purely in medical or epidemiological terms ignores evidence that it was rarely, if ever, designed solely on medical grounds at the time.

From the text:

Whether or not they make explicit links to the present, historically minded studies of public health confirm that past practices inhere in current perceptions and policies, which, like their antecedents, unfold amidst shifting amalgams of politics, culture, law and economics. in addition to increasingly sophisticated medical expertise.

[ . . . ]

Thus, for example, the immediate response to SARS-infected individuals and suspects SARS "hotspots" in Asian and Canada in 2003 was fundamentally the same as the European response to cholera in 1831; surveillance, isolation, quarantine, border control.

This is a simply brilliant article, one of the best I've ever read in expressly detailing the importance of history for contemporary public health policy.  Highly recommended.

On Vaccinations

I recently had an interesting conversation with guest-blogger extraordinaire and friend Kelly Hills on the current brouhaha regarding vaccinations.  I thought I'd share some of my thoughts, as I think they implicate some concerns fairly within the domain of the medical humanities.

BLOGVERSATION: Prettier than Napoleon, and Law and Letters.

On Unnatural Causes

Look, there's nothing I can possibly say about the upcoming documentary Unnatural Causes that either I haven't already said, or that others haven't already said much better.  In many ways, the issues regarding public health policy and the social determinants of health I've been covering here on MH Blog are encapsulated neatly in the documentary.

It's a four-part series, beginning tomorrow, March 27, on PBS at 10 pm EST (I think, check local listings).  If you care at all about health and illness, it's an absolute must. 

I feel particularly fortunate because I will have the opportunity to meet some of the producers at the Intercultural Cancer Council Biennial Symposium on Minorities, the Medically Underserved & Cancer April 3-6.  I'll try to post something as a follow-up.  Any MH Blog readers who will be attending the conference are encouraged to drop by and say hello.

In any case, watch the documentary!

UPDATE: Well? What say you all? I loved it; thought it was terrific.  Interviewed many of the right people (Kawachi, Krieger, Williams, Christakis, Marmot, among others), made key points about chronic stress and the neuroendocrine pathway (which we've noted here), and talked at length about the social gradient of health.  There's obviously going to be many who differ on the appropriate policy prescriptions, but I thought it laid the groundwork very well.

CFP: POLITICAL THEORY AND PUBLIC HEALTH

Well,I figured I could send this to Daniel and he could post it, or I could just get off my butt and do it myself. Figuratively speaking, anyhow.

CALL FOR PAPERS

Workshops in Political Theory - Fifth Annual Conference
Manchester Metropolitan University
10-12 September 2008

PANEL: POLITICAL THEORY AND PUBLIC HEALTH

Public health is an area of health care focused on the health of groups or populations. However, such activities can be controversial for at least two reasons. First, public health action involves collective activities, often through government-sponsored interventions. This raises concerns about the legitimate scope of government action in relation to public health or the proper distribution of individual and collective responsibility for health. Second, public health often focuses on the prevention of harm or risk reduction rather than treatment. This raises important concerns about priority-setting in health and the proper distribution of scarce resources in the promotion of health across populations and, particularly, vulnerable groups within society. There has been a recent surge of interest in the discussion of these issues within the growing field of 'public health ethics'. The purpose of this workshop is to explore the many ways that political theory and political philosophy may contribute to the development of this field and thereby contribute to normatively justified public health theory and practice. The organisers invite original contributions to a host of relevant questions, including (but not restricted to):

How do (should) political theorists think about 'public' health?
What role do the values of justice, freedom, equality etc. play in public health?
What obligations do health workers and ordinary citizens have to those in need within their own communities or across the globe?
How should we understand notions of public health risks and harms, and how should we respond to them individually or collectively?
What would a democratically accountable public health practice look like?
The organisers are interested in receiving proposals that discuss central conceptual concerns in the discussion of public health as well as papers that employ a political theory perspective to address specific practical concerns.

If you would like to present a paper at this workshop, please send an abstract of 300-500 words to Angus Dawson (a.j.dawson@keele.ac.uk) or Jurgen De Wispelaere (jurgen.dewispelaere@tcd.ie) by April 30, 2008. Contributions may be invited to submit for a special issue of Public Health Ethics (http://www.oxfordjournals.org/our_journals/phe/) on political philosophy and public health to appear in 2009.

For further information, please visit the conference website: www.hlss.mmu.ac.uk/pap/events/wptCALL FOR PAPERS

-Kelly Hills (with thanks to Bonnie Steinbock for the forward)

Symposium on Pandemic Flu

Via the Professor comes word of a Symposium being organized by MH guest-blogger extraordinaire Frank Pasquale entitled "Preparing for a Pharmaceutical Response to Pandemic Influenza".  From the web site:

Seton Hall Law School’s Center for Health and Pharmaceutical Law and the Seton Hall Law Review will be hosting a symposium on October 23-24, 2008, to examine the legal, ethical, and public policy issues related to developing a pharmaceutical response to an influenza pandemic. Panels will explore issues related to the development and approval of vaccines and antiviral drugs, both before and during a pandemic; the allocation of vaccines and antiviral drugs in situations of scarcity; pricing issues; and liability and compensation for drug-related injuries. There will be a special emphasis on issues related to international equity [Well of course there will be if Frank is helping to put it together! -- Ed.]

[ . . . ]

Persons interested in participating as a panelist at the symposium should submit a CV and a 200-word abstract of their presentation to Julie Sauer, Symposium Editor, by April 15, 2008. Julie Sauer may be reached at (201) 739-7310 / sauerjul@shu.edu. Prospective panelists should indicate whether they would be interested in submitting a paper based on their presentation for publication in the Seton Hall Law Review. Contributions are welcome from scholars and practitioners in all disciplines.

We here at MH Blog particularly appreciate that last sentence! Further details are available on the Symposium web site.

On Widening Inequalities and Health

A peer remarked to me recently that MH Blog has in part started to look like "Social Determinants of Health Blog."  This was meant as observation, not criticism, but the observation is a fair one.  To be sure, the medical humanities is significantly more expansive than concerns over health disparities, public health policy, and the social determinants of health.  One of the challenges of working on an interdisciplinary blog like this is that I cannot possibly hope to cover the breadth and length of the medical humanities.  That's one reason I rely so heavily on the skills of the various contributors to this blog, to help me try to expand the reach of the posts here. 

However, from the outset, I freely admitted that this blog will undoubtedly reflect my own interests and pursuits, even though it is not, per se, a personal blog.  This is itself a humanist precept, of course, as we've noted here before.  Moreover, work on health disparities, health policy, and the social determinants of health touches on the medical humanities in important ways.  I think of it as evoking Plato's fundamental question: how shall we live? What kind of society do we want to practice being? I hope the answer to this question is in part, "a society that consciously works to ameliorate human suffering."

Of course, the translation of that general principle into local, particular action is obviously fraught, but this, too, is a quintessentially humanist concept.  In short, I think the medical humanities have much to offer for the socially minded health policy commentator (and what other kind could there be?!?), and that is reflected in this blog.

With that said, the N.Y. Times ran an article on the widening health inequalities in the U.S., continuing the recent spate of coverage on the SDOH.  Excerpts:

WASHINGTON — New government research has found “large and growing” disparities in life expectancy for richer and poorer Americans, paralleling the growth of income inequality in the last two decades.

Life expectancy for the nation as a whole has increased, the researchers said, but affluent people have experienced greater gains, and this, in turn, has caused a widening gap.

[ . . . ]

Some health economists contend that the disparities between rich and poor inevitably widen as doctors make gains in treating the major causes of death.

Nancy Krieger, a professor at the Harvard School of Public Health, rejected that idea. Professor Krieger investigated changes in the rate of premature mortality (dying before the age of 65) and infant death from 1960 to 2002. She found that inequities shrank from 1966 to 1980, but then widened.

“The recent trend of growing disparities in health status is not inevitable,” she said. “From 1966 to 1980, socioeconomic disparities declined in tandem with a decline in mortality rates.”

This is significant for a variety of ethical and policy reasons, not least of which is the burgeoning evidence that population health is itself connected in significant ways to overall socioeconomic inequalities.  The idea is that one of the most promising means to improving population health is by reducing inequalities (and there are many ways of doing so that do not expressly rely on wealth redistribution).

As they say, go read the whole thing.

When You Just Want to be Treated Like a Dog

In July of 2006, our beloved family dog Toby was put to sleep. Toby was a purebred cocker spaniel, and an amazing 19 years old. Over the years his hearing had mostly gone, and he'd developed cataracts in his eyes. His final year of life he developed arthritis, and walking was often painful for him. But we carried him up and down the stairs, gave him medications and painkillers, and could tell that the pain wasn't too bad; he still played, he still begged for attention and food, still stuck by my mother's side like he was glued there.

But in the spring of 2006, he developed a weeping sore behind his eye, and it abscessed, eating away the eye until there was just a bloody orb. The vets did their best to treat it, and my family paid the vet bills without thinking. At the time, my mother had just finished her best-chance round of chemo, and the very idea of having to make the decision to put Toby to sleep was one we wouldn't even discuss. "We don't believe in death" seems to be the motto of our house.

But when push came to shove, and it was clear that Toby's eye was gone and the infection raged on, when he stopped eating, stopped getting up, stopping trying to play, couldn't do much more than hobble carefully over to lay next to Mom for comfort, it was clear what it was time to do. It was hell, the sort of thing you don't want to do, but also the responsibility we take on when we have, and love, pets. Sometimes, it's time to allow them a quiet and pain-free death in the arms of those they love.

So that's what my father did, and it was a rough day. We lost Toby, we learned Mom's cancer was back. We had to start talking, then and more seriously, about how to treat Mom if and when her cancer progressed.

One of the first things I said to many people, when we found out Mom had stage four lung cancer, was that I was so very glad that my parents lived in Oregon. As a practicing Catholic, I didn't expect Mom to exercise the Oregon Death with Dignity Act, but that the option was there - I couldn't imagine having her hooked up to machines, existing in an in between state of life and death, fighting to die. That, if death was not swift in coming, if the pain became too much, if she could reconcile it with her own beliefs, there was a quiet and simple death available - it was mercy on the most emotional and basic level.

This is not, of course, the same as taking the family pet in to be put to sleep. That's active euthanasia - and given the lack of ability for Toby to take medications to end his own life, is understandable. But the fact that we have the option, at least in Oregon, for terminally ill patients to decide what and when is enough, when their quality of life is such that they would rather end it without further pain for themselves or others, and that we have not only the option but almost a social agreement that we it is the ultimate in compassion to put our animals to sleep when they are in pain, the story of Chantal Sebire is so sad, and so telling of how our priorities have become so out of line with our compassion.

Ms. Sebire had esthesioneuroblastoma, a terminal cancer that spawned multiple tumours in her face/sinuses. Bone tumours - disfiguring, emotionally difficult, and by all accounts, the worst sort of pain you can experience. She fought this terminal illness for nearly eight years, knowing it was a losing battle, and she finally had enough - she asked the French courts for help in dying, so that she could do it easily, well, without pain, without error.

The French courts said no. She appealed to the French president, who suggested that perhaps she get another opinion from other doctors. The French popular press rallied behind her, and many people began questioning Roman Catholic France's stance on assisted suicide - that they would be happy to place her in an artificial coma and let her then die over a period of weeks, without artificial nutrition and hydration, (a horrible option for her children and extended family) might not actually be as kind an option, or as moral, than letting her die a quick and conscious death.

Ultimately, the French courts didn't stop Ms. Sebire's death. They just prevented a guarantee of a peaceful and good death.

In at least one state, we've acknowledged that the terminally ill should have the right to decide when to die. And we have long acknowledged that it is our responsibility to ease the pain and suffering of our animals, to the point of ending their lives if that's what it takes. And yet, we still cannot extend that same compassion towards those who are dying in pain.

Normally, we consider treating someone like an animal to be derogatory, cruel. Yet in this case, it seems like it could have been the kindest thing to do.

-Kelly Hills

Call for Proposals: Cancer Stories

The Medical Humanities Program at IUPUI has announced a Call for Proposals entitled "Cancer Stories:  The Impact of Narrative on a Modern Malady."  The call is related to a Medical Humanities Symposium.  Here are some excerpts from the web site:

"Cancer Stories" is a two-day symposium organized around the premise that narratives about cancer have influenced the way in which cancer is experienced in America. Prose, poetry, performance, and the visual arts constitute the range of narratives the symposium will explore.  We include both the production and reception of cancer stories by physicians, nurses, patients, artists, and advocates to explore how the cultural meaning of cancer has shaped the human and institutional response to it.

[ . . . ]

"Cancer Stories" is a free symposium that will take place 6-8 November 2008, as one of a series of events surrounding the dedication of the Indiana University Melvin and Bren Simon Cancer Center (IUSCC) on the campus of the Indiana University School of Medicine and Indiana University-Purdue University-Indianapolis.  Following the symposium, plenary and workshop presenters will gather for a working session devoted to framing an edited volume of manuscripts relating to their presentations.  Accommodation for participants is available in University Place Hotel, adjacent to symposium venues.

Further details are available on the symposium web site.

(h/t DV)

On Disparities, Social Determinants, and Early Childhood Development

We've covered these issues before, but as part of their theme issue on disparities and SDOH, Health Affairs Blog has been running a series of columns on the subject.

Thomas Miller has a particularly insightful column today, touching on many points and issues we've noted and advocated for here on this blog.  Here's an excerpt:

When the primary measures for health disparities concern relative access to given quantities, and qualities, of health care services, they overlook the more complex total mix of possible inputs that combine to produce health outcomes. To some extent, increased emphasis on various “upstream” determinants of longer-term mortality and morbidity — such as socioeconomic status, education, neighborhood/geography, social interaction, culture, and family — can help move our disparities remedies beyond the confines of the medical services tool kit.

Indeed, this is in part why it is inadvisable to reduce matters of public health policy and what I call the ontology of public health -- what is it that makes populations healthy or ill? -- to data-driven health services research and health economics.  This is not to disparage the latter; they are both imperative for a variety of reasons, and any health policy discussion that omits such data is ill-informed, to say the least.  What I am disparaging is the tendency to reduce health policy to such modalities, in no small part because they typically do not address the normative questions implied by the larger ontological questions.

More from Miller's column:

Yet even on this front, the temptation is to see the problem too narrowly, as one of improving the “health” rather than improving the overall “life” of any given group or larger population. After all, the benefits of growing up, and living, in environments of economic opportunity, stable family structure, safe streets, effective schools, supportive friends, and, yes, even abundant fresh fruit and vegetables extend well beyond adding another year or so of average life expectancy or delayed chronic condition onset. Recommending the obvious is preferable to ignoring it, but this raises the question of what should be done in more prioritized ways for the most disadvantaged groups and individuals with the least tractable conditions and problems.

Indeed.  As important as prevention is, for example, true attention to the ways in which social and economic conditions largely determine health requires we go far beyond the kinds of screening that is generally deemed to be paradigmatic for prevention.  Here, the proper concern is prevention writ large, prevention going all the way back to early childhood, and quite possible even further, to prenatal care.

Miller offers several different recommendations, all of which are well-worth considering.  As they say, go read the whole thing.