Medical Humanities Blog

what does it mean to respect the dead?

What does it mean to respect a dead body? Is it respectful to leave a corpse on a mountain top, for vultures and other scavengers to eat? Is it respectful to allow the body to decompose naturally, then retrieve the bones to place in ossuaries? To fill a body with chemicals that will encourage mold and bacteria to form on the skin, yet prevent decomposition? To cremate? Bury at sea? Carve jewelry or make bowls from skullcaps? Bury in an L-shaped grave in a simple shroud, reusing the grave over and over again? Leave displayed in glass coffins for centuries? Have the body cut into bits and pieces, distributed to new houses of worship around the world? Turn into jewels, or part of a marine reef rebuilding platform? To be left on the ground, eaten by bugs, and then examined by students?

It's a list that could go on, and it could be that you find one or more practices listed  as disrespectful to the dead - but they are all within the funerary practices of one or more religions/cultures in our world. And as a matter of fact, some of the more eyebrow raising methods of dealing with dead bodies belong to the Catholic Church. Part of this is simply a matter of length of existence, and part of it is a reflection of the beliefs of the religion. The bodies of those who are considered special, holy in some way, are often retained for display, or for parceling into relics to be housed at various churches and cathedrals around the world. Surely a body, slightly waxy and preserved through an abnormal adipose reaction, displayed in a glass coffin, is going to appear disrespectful to someone whose religion believes that a dead body should be wrapped in a simple shroud, buried in the ground and allowed to decay, with limited or no headstones marking the surface of the grave or who is in it (and with the grave being reused once that body as decayed to dirt).

So it was with some surprise that I read the Cincinnati Archbishop has canceled field trips to see the "Bodies ...the Exhibition" on the grounds that the exhibit fails to respect the human bodies involved in the display. The Rev. Mike Seger, with whom the Archbishop consulted in this decision, has said

we object to the misuse of the body in a way that doesn't respect what the body may have been. These are people who were once alive, had relationships, suffered, bore children.

To treat the human body - any body - like 'stuff' is morally offensive and grisly. It reminds me of a carnival show 100 years ago.

Now, as a confession, I have not seen "Bodies ...The Exhibition", but I have seen Von Hagens "Bodyworlds", and I loved every minute of the display. The bodies were fascinating, and to see inside, to see such an intimate detail and display of that which is normally hidden to all but surgeons, was an almost miraculous sight. The exhibit itself was full of quotes by famous philosophers questioning the meaning of the body and life itself (so naturally, I was charmed), and perhaps best of all? Being able to hold segments of a plastinated body, including thinly sliced plates of a torso. It was an awesome exhibit, in the true sense of the word - it created a sense of wonder, a sense of awe.

That said, "Bodies ...The Exhibition" has been under heavier criticism from the scientific and general community, for the fact that their bodies come almost exclusively from a single large hospital in China, and they are unclaimed bodies that the hospital receives compensation for releasing. Because of human rights violations in China, there is a valid fear that the bodies being released for plastination are not, in fact, unidentified bodies, but the bodies of criminals or the mentally ill who have been killed/allowed to die and then not returned to their families.

And if that were the basis for which the Archdiocese was making its recommendation from, that there were questions about the origins of the cadavers being used that could not be answered to the satisfaction of the Church, and as such they did not feel they could sanction what could in fact be an activity most of the world would condemn, I wouldn't think twice of it. But the very content of the statement that they are making can be broken down to show not only their disapproval of the exhibit, but can also be read to indicate that the way they, the Catholic Church, treats the dead, is always a way everyone would agree is respectful.

For a Church that has cathedrals built of bones, catacombs lined with monks bones and bodies, that dismembers bodies to create relics, that venerates parts of people dead for centuries, that displays dead bodies in glass coffins - this is a bold declaration to be making.

-Kelly Hills

 

Call for Papers: Crossing Colonial Historiographies

The Centre for Health, Medicine, and Society: Past and Present, at St. Anne's College, Oxford University, has announced a Call for Papers on Crossing Colonial Historiographies: Histories of Colonial and Indigenous Medicines in Transnational Perspective, 16-17 Sept., 2008.

Here is an excerpt from the conference website:

The field of history of medicine during the age of empire has expanded considerably in the last two decades. Engagement with different kinds of colonialism and with varied indigenous socio-political cultures has led to a wide range of approaches to colonial medicine and indigenous modes of healing. The increasingly distinct historiographic traditions of colonial and indigenous medicines emerging in the various regions formerly ruled by different colonial powers have developed quite independently from each other. This has reinforced a geo-cultural divide and a regrettable lack of conceptual interaction between those working on North/East/West/South Africa, South Asia, South East Asia, Austral-Pacific and the Americas respectively. Moreover, conceptual and methodological debate between scholars specialising on British, Spanish, Portuguese, French, Italian, Dutch and German colonial contexts in different regions rarely occurs, as journals tend to focus on specific European traditions and researchers at medical history conferences find themselves usually streamed into separate groups and panels (e.g. Asian or South African, Chinese or South Asian etc).

300-word abstracts are dune June 1, 2008.  Further details are available on the website.

Beyond the Sieve of Biomedicine: Towards a Cross-Cultural Understanding of Chinese Medicine

Guest blogger extraordinaire Patrick S. O'Donnell has produced an incredible, scholarly cross-cultural analysis of Chinese medicine, and is kind enough to permit it to be posted here on MH Blog.  The paper is exhaustively researched, meticulously argued, and synthesizes a number of different ideas related to multiculturalism, cultural relativism, philosophy of medicine, ethics, and care.

I cannot recommend it highly enough.  You may download the paper here: Download beyond_the_sieve_of_biomedicine_2.doc .

Fellowship on Social Determinants on Health

The University of British Columbia Department of Sociology invites applications for a postdoctoral fellowship in the social determinants of health, effective on or before July 1, 2008.  Here is part of the job description:

UBC, a world leader in health research and arguably the birthplace of the population health movement, has strong programs in health sociology, epidemiology, health promotion, health services and policy research, health psychology and health economics. The Department of Sociology has created a specialty in the Social Determinants of Health field, with a special focus on applying theoretically sophisticated and methodologically diverse approaches to researching and understanding health inequalities. The initial appointment is for one year, potentially renewable for an additional year or two, with a salary of $55,000 per year. A Ph.D. and evidence of research experience in the social determinants of health field are required. Applicants should normally be within three years of being awarded the Ph.D. at the time of taking up the position. The successful candidate will be expected to further develop her/his own research agenda while also collaborating with faculty members in the Department who conduct health determinants research.

Priority will be given to applications received before February 29, 2008.  Further details are available on the website.

Health Wonk Review

Vince Kuraitis over at e-Care Management hosts the latest Health Wonk Review.  Our post on Preventable Death, a topic near and dear to my heart, made the Review.  Check it out!

More on Research Ethics & Conflicts of Interest

Lots of good blogversation on issues of research ethics and conflicts of interest. 

First, there is the release of the results from the ENHANCE trial, which did not show that ezetimibe (brand name: Vytorin) was effective in preventing heart attacks.

There is good background from Health Care Renewal Blog here, and further discussion and linkage here.

Howard Brody has some perspectives worth reading here and here.  Ed Silverman notes that Merck & Schlering-Plough have decided to suspend DTC TV ads for Vytorin.

Second, the revelation that a number of studies with negative findings regarding the efficacy of SSRIs has received substantial analysis on the Clinical Psychology and Psychiatry Blog.

Bernard Carroll provides detailed discussion of the ethics involved in promoting atypical antipsychotics like risperidone, and Dr. Brody and ClinPsyc also weigh in.

Third, OIG has released a new report (PDF) entitled National Institutes of Health: Conflicts of Interest in Extramural Research.  The results are difficult to stomach, though working on COIs in research and practice tends to inure one to surprise on these matters.  The upshot of the report is that reporting -- let alone management and action -- of conflicts of interest in NIH-sponsored extramural research is inadequate.  Among OIG's findings:

NIH could not provide an accurate count of the financial conflict-of-interest reports that it received from grantees during fiscal years 2004 through 2006.

NIH is not aware of the types of financial conflicts of interest that exist within grantee institutions because details are not required to be reported and most conflict-of-interest reports do not state the nature of the conflict.

Many Institutes' primary method of oversight is reliance on grantee institutions' assurances that financial conflict-of-interest regulations are followed.

Hardly reassuring, eh? OIG recommended (1) increased oversight of grantee institutions; (2) requiring that grantee institutions disclose the details of the reported financial COIs; and (3) requiring Institutes to forward all COI reports to the Office of Extramural Research.

Medical Humanities Lexicon: Clinical Gaze

Today's entry in the Medical Humanities Lexicon is the "clinical gaze."  While the concept is articulated in a number of sources, it is generally most associated with Michel Foucault in his tour de force, The Birth of the Clinic: An Archaeology of Medical Perception.

Understandably, the mere mention of a 'postmodern' French intellectual has a tendency to send people running.  But Foucault, as near as I can tell, is generally taken quite seriously among humanities scholars of medicine, even if neither his ideas nor his style are without critics.  In any case, The Birth of the Clinic is extremely important in thinking about health, illness, and the culture of biomedicine from a medical humanities perspective.

Seeing Sideways: Stepping into Anorexia

For those of you who have read The Secret Life of Lobsters, the word umwelt will be a familiar one. It's a biological term (German, of course - all the great descriptive words are, aren't they?) introduced by Jakob von Uexküll that literally means the surrounding world, or environment, and practically means the sensory experience that gives an organism its subjective experience of the universe. To put it in terms that the philosophers in the room might understand, it's the biological take of Nagel's phenomenal, subjective question of "what is it like to be a bat?"

In The Secret Life of Lobsters, umwelt is brought up when discussing how it is a lobster sees in the water - specifically, the fact that a lobster actually sees scent. (It's a fascinating book, and I highly recommend it - especially to those of you who enjoy books on food and food origins). Where I didn't expect to see umwelt so immediately was on MSNBC; yet after finishing the book and watching football, I turned to do my nightly crawl of news and found just that.

This narrative on MSNBC is titled "Anorexia nearly killed my wife", subtitled "To better understand a loved one's illness, Tom Cramer stopped eating, too". And that's precisely what the story is - a narrative of a husband's perception of his wife as she developed anorexia, his reaction to her not eating (a very typical attempt to bribe and pressure her into eating), and then finally, his decision to mimic her behaviour and severely limit his calories. He did this out of desperation, as an effort to understand just what being anorexic was like, to understand the hold it could have on his wife - something, anything, that could allow him the small break he needed into her psyche so that he could help her, and help their family.

It's a small but fascinating glimpse into umwelt, as he himself moves from what we would consider ordered to disordered thinking, from being hungry and fatigued to feeling challenged and buoyed by his control and the lack of eating. Although he stopped his experiment after a week, it was enough time with another perspective, a different subjective experience, umwelt, that he has been able to support his wife on her journey towards wellness since.

An example of why an ability to shift umwelt is necessary becomes clear in the recent UCSF missteps over MRSA USA300, the new strain of community acquired staff that had been widely reported as a new gay disease - not necessarily because of malicious intent on the part of the media (although the sensationalism is hard to deny), but because in their effort to be precisely clear to fellow researchers who would be peer reviewing their work, the UCSF scientists used language that has precise meaning within the public health community, but has a much broader meaning to the general public. When the media read the report, what they say, the meaning they interpreted, was clear - and utterly incorrect, because their umwelt was wrong, and although they were both using English to communicate, they weren't using the same specialized form of the language.

Many years ago, in my former life in the computer industry, there was a very small group of people who had a highly valued and rare skill. They were able to interact with both the computer programmers and the lay person, shifting their language to be appropriate to who they were talking to. They could talk tech with the best of them, and then turn around and translate that tech-speak into something the general public could easily understand. (And anyone who has ever tried to follow a stereo installation manual or computer guide knows how valuable someone who speaks both languages is.) In Marvelous Possessions, Stephen Greenblatt calls these people the Go-Betweens, who can navigate and translate across multiple worlds.

We tend to see and think of ourselves as all the same, and discount the fact that even within our human sameness, the range of subjective experience is so vast, so different, that at times we need to step out of our own way of thinking and try to see the world in a new light. At my alma mater, we called this parallel thinking, in biology it's umwelt - and it strikes me that the medical humanities, especially those of us working in applied, clinical or bioethics, would do well to either adopt the term or come up with our own for it, as it seems to me something that is at the very heart of what it is we do.

-Kelly Hills

 

On Presumed Consent

Regarding the announcement that the U.K. may alter its organ donation system to provide for an opt-out approach, Kieran Healy offers a fascinating meta-critique of the paradigm that tends to dominate analysis of consent for organ donation:

If you look at cadaveric organ procurement rates in the OECD over the past 12 years or so, we find that presumed-consent systems do in fact perform better on average than informed-consent systems. The question is why they do so. Debate in this area is dominated by bioethicists, economists and lawyers. A consequence of this is that—thanks to the disciplinary interests and biases of these groups—the organizational and institutional machinery required to make something as complex as cadaveric donation happen tends to drop away in debates, and is replaced by considerations of the ethical implications of this or that policy in general (e.g., concerning consent) or arguments about the effect of this or that incentive or rule on individuals (e.g., concerning financial incentives or a legal regulation). But the organizations matter because they manage the logistics of procurement, and this is a very complex process. How a change in the law is implemented in practice, or how a rule is embedded in organizational process, can greatly affect the outcomes. This is more a question of organizational and institutional sociology.

I am not sure this is "more a question of organizational and institutional sociology" than of law, regulation, and ethics, but coming from a MH perspective, I absolutely agree with Kieran that using the tools and expertise of organizational sociology can shed some important light on why and how policies are executed and implemented.  I'm reminded here of Latour's thesis in the Pasteurization of Medicine, which is, to grossly oversimplify, that Pasteur gets all of the credit for his discoveries but that his discoveries could never have been promulgated, socialized, and implemented without an extensive social network of actors and stakeholders.

Kieran continues:

Reform of the rules governing consent is often accompanied by an overhaul and improvement of the logistical system, and it is this—not the letter of the law—that makes a difference. Cadaveric organ procurement is an intense, time-sensitive and very fluid process that requires a great deal of co-ordination and management. Countries that invest in that layer of the system do better than others, regardless of the rules about presumed and informed consent.

As someone favorably disposed to critiques of the abstracting and atomizing tendencies in many dominant approaches to bioethics, this seems to make a lot of sense to me.

Finally, I should note that Kieran states in the comments that

Why separate the logistics from the ethics, and claim that one, and not the other, is the true cause of higher rates of procurement?

In part just as a matter of rhetoric, to redress a strong imbalance in current debate about procurement, which emphasizes very strongly a kind of idealized debate about consent, and attributes successes in other countries entirely to changes in the law governing consent rather than to the organizational changes that often go with them.

The issue, then, is not that legal rules and ethical analyses are irrelevant, but that much greater attention should be directed to the organizations that administer organ retrieval and donation.  Finally, I would add that it is certainly possible to view issues relating to ethics in clinical practice and biomedical/scientific research as deeply important, while at the same time espousing dubiety at the dominant tradition of principlism in bioethics.  It is important, IMO, to conceptually separate the critique many have lodged against traditional bioethics from a critique of the importance of Plato's question as applied to medicine and research.

Querying how we should live or what is the good in medicine and research remains as important as ever it did, IMO.  On the other hand, Kieran's post nicely demonstrates just how crucial it is for those interested in thinking about the Platonic questions to expand the scope of inquiry beyond the confines of any one discipline.  This, of course, is also an argument in favor of taking an interdisciplinary approach to studying ethics in medicine and research, which is also a theme of this blog.

Thoughts?   

On the Geneticization of Health Disparities

The Center for American Progress has released an outstanding report on the Geneticization of Health Disparities, available here.  There's no abstract, though the executive summary appears on the linked to web page.  Here is the conclusion of the summary, with which I could not agree more:

Problems arise when race as a social reality and race as a scientific “fact” are conflated in medical research. These efforts to geneticize or racialize disease have several dangerous implications:

• They may skew research by placing individuals on a short list of socially constructed, government-defined racial categories, thereby increasing the risk of perpetuating health disparities.
• They may compromise the health of people of color by eliminating from medical consideration the social determinants of health problems.
• They may contribute to the reemergence of scientific racism through an emphasis on linking genes to disease and race.

The dangers implicit in all three of these efforts to racialize disease require health professionals to come to grips with the reasons for health disparities due to race as a social reality and the misconceptions about health disparities due to race as a scientific myth.

This paper will briefly detail some of the health disparities experienced by people of color in the United States before turning to the emergence of race-based medicine and the threat it poses to effective health care. The paper will then examine the evolution of racial categories in the United States, and how current research finds that race is not genetically real. The paper will detail how known social determinants, such as residential segregation and other inequities, have continued to marginalize the status of people of color in the health care system and perpetuate health disparities. In
closing, the paper will address the dangerous implications associated with an overemphasis on the role of race and genes on health disparities.

If you have any interest in these issues, the paper is an important read.