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Torture, Care, and the De-Nationalized Other

In the readings for this week, we have observed what Agamben astutely notes as the separation between bare life (zoe) and political life (bios). In his chapter on biopolitics, he argues that the rights of man (located in zoe), as was enshrined by the various declarations of rights, does not necessarily encompass the rights of citizens (located in bios). As Stevenson and Ticktin show, the point of intervention for modern humanitarianism has been zoe and not bios. For example, Stevenson tracks and critiques the biopolitical mode of “anonymous care” or a “regime in which it doesn’t matter who you are, just that you stay alive” (p.7). Ticktin also makes us privy to how humanitarian assistance in France has focused on the provision of temporary residency and medical care to “apolitical,” diseased bodies of color. These texts alert us to the injurious effects minimal forms of care have on communities, families, and bodies.

However, I would like to draw our attention to a related yet different process: torture. In these situations, there is no pretense of care. The body becomes a site upon which the law, and the various exceptions enshrined within it, allow for the state to mutilate and kill bodies for the sake of national security. In the links below, you can see how torture at secret CIA facilities and Guantanamo Bay has resulted in both physical and psychological harm.

 

Miami Herald Article About Anal Surgery

Short Film about Torture

NYT Piece about long term effects of Torture

 

This is quite a different perspective of zoe than Stevenson and Ticktin offer. With the case of torture, there is a distinct process of “de-nationalization” (Agamben, p.132) that occurs in which US and non-US citizens are stripped of all their rights and made subject to extra-judicial, extractive, and inhume interrogation techniques. Torture necessitates the removal of bios and the creation of bare life. However, interesting to note in the links is that the US government does not always admit to torture or not providing adequate medical care. In many ways, torture has become the US’s “public secret.”

Here is the quote from the NYT article that I would like to serve as a springboard for discussion by Captain Shimkus, the previous commanding officer that managed the Guantanamo Bay Hospital.

“Captain Shimkus now regrets not making more inquiries. “There was a conflict,” he said, ‘between our medical duty to our patients and our duty to the mission, as soldiers.'”

In this quote we see care and torture as mutually exclusive phenomenon. I wonder though, if torture, despite its utter absence of care, can be a means to think conceptually about care. To be more specific, I am curious about whether torture is an example in which the absence of care for one body, a tortured and de-nationalized other, results in the care of another body, a national citizen. How does torture engender discourses of care, be they related to caring for the nation-state, national security, or national citizenry? Does torture’s relationship to national security show that care and compassion can be produced on the mangled bodies and psyches of a de-nationalized other? How is care not just a tactile relationship between the care giver and the cared for, but a symbolic relationship that is dependent on the violent (inclusive) exclusion of zoe from the polis?

“Have You Done What You Can?”: On Ethical Research

“朱门酒肉臭,路有冻死骨。”—— 杜甫

Roughly translated as: The wealthy and powerful have so much to eat that their food and drinks go bad. Outside their mansions, the corpses of the poor who died of hunger and cold pile up on the roadside (Du Fu, 755, Tang Dynasty).

Human suffering is no news. For thousands of years, individuals at the lower end of the socioeconomic spectrum have been unequally influenced by larger social force, be it political, economic, or institutional. All four books for this week painstakingly tease out how suffering is intricately produced at the intersection of multiple forces in which the poor and (thus) powerless are caught up, their life being crushed.

I’d like to give an example of mainland China that demonstrates how extreme suffering and tragedy are structurally produced. The case I present is the so-called AIDS village in China. The YouTube channel has a 5-min brief (and sarcastic, disrespectfully I’d say) of the tragedy. The documentary has an elaborate portray of the event. Unfortunately, I am not able to find one with English subtitles.

YouTube: https://www.youtube.com/watch?v=E4xQfGQCi9U

Documentary: http://jishi.cntv.cn/zhongguoaizibingshilu/videopage/

Long story short. Henan Province has always been one of the most impoverished areas in China. The local officials, in order to boost the economic development, encouraged the blood-selling industry, which, of course, would not be possible with the advancement of blood-drawing machines and growing demand for cheap blood in urban areas. The profit of selling blood, for rural residents, is much more than they can possibly make. As a result, it was not uncommon that the whole village would go together to sell their blood. However, private, unsanitary blood-drawing business took the opportunity for black-market blood-selling. They used the same machine without sterilizing. Consequently, so long as one person was HIV positive, the whole village would be likely infected.

The story gets more difficulty to narrate. Any attempt to present a neat storyline may invite problems. Indeed, as Kleinman et al. (1997) and Farmer (2001) point out, suffering is co-produced by so many social forces that it is almost impossible to pinpoint where exactly the sources of suffering are. In the case of AIDS village, the rural residents barely had any idea about HIV/AIDS. The local officials, in order to avoid responsibility, suppress the victims’ appeal for compensation and justice. Policies, bind them to the rural areas they were born and make it difficult for them to move to urban areas where HIV treatment is relatively more available. But it wouldn’t have mattered, since they do not have insurance. Even if they did, insurance sometimes only pays half as much for a rural resident as for an urbanite. I can keep listing reasons why these people have no other option but to rot their life away by AIDS in their villages.

This story is not concealed—or politically appropriated and silenced, as Kleinman & Kleinman phrase it. Journalists, humanitarians, researchers, and government officials frequented the villages when the story was first learned. Not much can be done. The more effective inhibitors for HIV/AIDS were available only in the West, not to mention that the rural farmers couldn’t even afford the less effective ones available in China. Why otherwise would they rush to sell their blood? To borrow Kelly Ray Knight’s concept of temporality, I’d say that these farmers have a “waiting” time, one that is fairly short, considering how quickly they would die from AIDS. And they did. And then we forgot about them. Their suffering is appropriated and consumed by those of us safely away from the tragedy. I wonder if people shed more tears for Titanic than their fellow Chinese in these villages.

While I think this would be justly called ethical indifference, what should we do, as anthropologists or public health scientists, if we found ourselves in a site like this? Faced such grave social inequalities and human suffering, how can we conduct research ethically? For anthropologists (medical anthropologists in particular) as well as public health scientists, this question weighs even heavier. When we are conducting research with our co-subjects, have we done what we can? The opinion that the anthropologist should remain an observer, leaving the field as it is, in my opinion, simply does not hold water when the issue she studies is on suffering. Does one’s research have a tangible impact on the co-subjects’ life in a very real way? And by real, I mean in ways that the informants consider significant to themselves too. In other words, does their life become any better because of one’s research?

A most common response would be, the value of research can very well manifest in the effect of “calling for attention.” I agree. There is only so much one single researcher can do, and in order to bring about societal changes, much more people need to be involved and contribute to the betterment of the world we live in. However, the question remains. Have you done what you can to make your co-subject’s life better in tangible way?

Let’s revisit the famous photo discussed in the chapter by Kleinman & Kleinman (1997).

kevin-carter-vulture

For those of you who did not read Chapter One, here is a brief review: Taken in 1993, the journalist Kevin Carter captured a young child trying to make her way to the shelter. Not very far from her, a vulture was waiting to devour this soon-to-be-dead child. Carter took the picture, drove away the vulture, and left. This photo spawned controversy. While some admired the journalist’s sharp journalistic eye, some questioned his choice of taking the photo without saving the girl. A year later, Carter committed suicide.

Did Carter and his famous photo call for attention? Undoubtedly. It earned the New York Times a Pulitzer award for that. The world got to learn about the severity of the famine in Sudan and more intervention was created. But is it ethical on Carter’s side? Isn’t it just a form of appropriation of the little girl’s suffering so that the rest of the world, the wealthy ones in particular, can safely satisfy their voyeurism, secretly feel happy that it is not them dying from hunger, and perhaps even feel noble donating a meal’s worth of cash?

I cannot help but notice the similarity between this and anthropological work. We go to the field; we collect data; we come back and write ethnography. Our ethical connection with our informants, it seems, lasts only as long as a journal article or a monograph requires. After writing up, the worth of our informants’ suffering is also exhausted. Alas, prolonged engagement does not mean permanent engagement. One project does not get one tenured. For our informants, suffering may last until the end of their life. Indeed, for all the authors in these weeks’ readings, some of their informants did not even survive the ethnographic project. But for the anthropologist, for the rest of the world, their suffering has a fixed temporality, to borrow Kelly Ray Knight’s (2015) phrase. For many, their suffering, to put it in plain language, start from the first summer visit, and end with the dissertation field work.

Did Du Fu, I wonder, give food to the poor dying at the roadside? Did any of the anthropologists whose work we read manage to make however small an impact on their informants’ life? Putting bread on their table? Helping them get medical help? Anything other than watching and asking? Perhaps we should all ask ourselves, Have I done what I can? Does their life become better, in ways that they actually care?

Providing for ‘Sick Enough’ Citizens

In the fourth chapter of Petryna’s Life Exposed: Biological Citizens after Chernobyl, the author reflects on how illness from radiation began to redefine social and economic expectations of workers in the Ukraine. She brings up many topics including that of the ‘sick role,’ a sociological concept from the 1950s (pg. 89).

Petryna presents the struggles that the government has had in defining what is ‘sick enough’ for social benefits, especially after the transition to an independent democracy and the subsequent economic crisis. I found this discussion very interesting, as I think it is applicable internationally even in non-disaster affected locations. Regardless of where in the world you live, governments can only support so many people in this ‘sick role’ at a time.

Take, for example, disability benefits in the United States. While the Social Security Act has a strict definition of ‘disability,’ a growing number of cases seemed to be decided at a doctor’s discretion. In this article, Joffe-Walt spoke to a Dr. Timberlake about how he decides on disability status.

“We talk about the pain and what it’s like,” he says. “I always ask them, ‘What grade did you finish?'”
What grade did you finish, of course, is not really a medical question. But Dr. Timberlake believes he needs this information in disability cases because people who have only a high school education aren’t going to be able to get a sit-down job.
Dr. Timberlake is making a judgment call that if you have a particular back problem and a college degree, you’re not disabled. Without the degree, you are.”
 
This concept of relative disability is an interesting one and can tie back into Petryna’s ethnography, as she discusses how certain jobs are rewarded more liberally for the danger of radiation exposure. Of course, that pattern seems to be the opposite of what Dr. Timberlake suggests, with the wealthier and more skilled workers receiving the most benefit. Ukraine did face a different situation with regards to corruption and bribery in requesting and receiving medical compensation. However, the issues for a country surrounding people not being able to work due to illness – or at least saying they cannot – is the same.

The example in the NPR article of Scott Birdsall is indicative of this. Scott became unemployed and, after a while of searching for a job in vain, he went on disability for heart bypass surgery that he had had done previously. While imperfectly analogous to the Petryna reading, both the NPR article and the readings show how such programs, though necessary, are large contributors to the national debt of their respective countries.

Questions to consider:

What is a solution for these strained services – stricter guidelines on who receives benefits or something else?

What point, in this regard, did you feel Petryna was trying to make? And if you feel she was trying to be neutral, how successful do you feel she was?

The Terri Schiavo Case: Desires, Interests, and Bioethics at the Threshold of Life

(Also please note there are two blog posts today, because we had to double up, so see the one below this post)

In her seminal text, ”Can the Subaltern Speak?,” Gayatri Spivak articulates the complex relationships between intellectual representations and the subjects of those intellectual representations. At the risk of oversimplifying an incredibly complex text, one of her main arguments is a delineation between the interest and desire of the subject. What is relevant from this text in relation to the question of bioethics is this difference between interest and desire and what she argues is the responsibility of the intellectual to not turn away from the complex ethical and political implications that come with the intellectual representation of people who desire against their own interests. The subaltern (by definition) cannot speak so the intellectual cannot shy away from the two forms of representation, which are political representation (the interests of the subject), and representation as in re-presenting (as in vocalizing the desires of the subject). To me, this tension between interest and desire underlies all the difficult issues the readings for this week try to address, and consequently, the authors have to work within the tension of representing their subjects and re-presenting them

Applying this to the readings for this week on bioethics, I could not help but think about the ways medicalized subjects and research subjects are effectively made subaltern (by systems of care and research, not by the authors necessarily.) In the pieces we read by Professor Mason, and Adriana Petryna we see the ways in which people become populations undergirding data and in effect anonymized to the point of amorphousness. In the piece by Kaufman (optional reading), we see how the logic of our systems of care ”to move people along” can make individuals subaltern at the end of their lives. For example, people are resuscitated by CPR back into a “threshold of aliveness”(118). There is also Mrs. Krieger who says flat out “I don’t want to live” and that she would prefer to die at home, but is effectively ignored and put into a hospice anyway.

In both and many of the other cases, perceived interests and desires come into conflict with each other. The desires of research participants in the Professor Mason’s piece and Petryna’s piece are effectively ignored and that is justified by certain kinds of public interests. When it comes to Mrs. Krieger her desire to die at home without the stress and anxiety of the various kinds of care keeping her alive, both her daughter and her doctor seem to effectively override those desires through a logic that posits her staying alive as being in her interests.

Arthur Kleinman’s piece on bioethics seems to argue for an open engagement with this tension between desires and interest, and for attending to the process of framing the ethical problems itself. In doing so he argues for a deliberative relativism. The limits of such an argument is that sometimes issues that seem to fit into bioethical frameworks take on political proportions much larger than the issues a bioethicist would normally address such as the case of Terri Schiavo.

http://www.nbcnews.com/health/health-news/bioethicist-tk-n333536

http://www.politico.com/magazine/story/2015/01/jeb-bush-terri-schiavo-114730

http://www.lifeandhope.com/euthanasia

I remember the non-stop coverage of this case on television when I was younger. The fundamental tension was between the husband of Terri Schiavo, a woman who was in a vegetative state for ten years, and her family. The fight to take her off the ventilator or leave her on it eventually went to the Supreme Court, Congress, and even involved President George Bush.

“He believed she would never emerge from her comatose state — as did every doctor who examined her.”

“Terri’s family bitterly disagreed. They still believe to this day that she would have wanted to live, that her husband did not have her interests at heart and that they were unfairly pushed aside in their effort to save her life.”

Both sides of this dramatic political conflict believed they had the best interests of Terri Schiavo at heart or claim they knew what she would have wanted. Terri Schiavo, however, was made subaltern by her medical condition (I mean this as a provocative analytical suggestion, but I do not mean it as a political claim). She could not speak any desires. This might seem like an odd statement considering that she was in a vegetative state, but as Kaufman might say she was still in the “threshold of aliveness” even if she was not alive in the sense of “a state of identifiable awareness or even the most minimally discernible functional or expressive ability.”

I think this is what makes bioethics so difficult. Medical science has taken us so far that we are constantly pushing the “threshold of aliveness” and can gaze further into the earliest and latest stages of life (and aliveness) than ever before. At these bio-temporal extremes, the tension between desire and interests becomes much more stark as desire becomes less and less legible, and as interests lie more and more in the hands of the people and systems around a subject.

I have a lot more that I could write or say but I would rather put some if it in some of following questions in hopes of fostering discussion.

Can we think of bioethics as the opposite of “moving things along,” that is stopping the moving in order to reflect and assess?

Does Arthur Kleinman’s prescription for bioethics leave enough room for reflection on events that become as political as Terri Schiavo’s case?
How does disability at large and more specifically the example of anticipating a child with down syndrome complicate (or not complicate) the issues at hand. What happens Kleinman’s framework when the people most affected by bioethical decisions cannot participate in the negotiation he proposes?

(Edit: missing word in sentence inserted)

Informed Consent: An ethical requirement for all, or a moral choice for some?

In addition to autonomy, which is arguably the most well-known and prized construct in North American ethical discourse, informed consent also occupies an important role in the biomedical sphere. Informed consent, which is defined by medicine as being dually rooted in a patient’s ethical right to direct what happens to her body and in a physician’s ethical duty to involve the patient in her care, is even taught as a “practical application” in many medical schools. Below, I have included two case studies, from the University of Washington School of Medicine, that describe potential clinical encounters surrounding issues of informed consent.

https://depts.washington.edu/bioethx/topics/consntc1.html

The discussions that accompany these two case studies (also accessible through the link), describe informed consent as an ideal to obtain, with an emphasis on the probability of instances in which this obtainment is simply not possible. Most definitions of informed consent include a dimension about patient competency, making the mental ability to understand and process any provided information a requirement for voluntary choice about accepting or refusing treatment. For some, including the very young and the very old, this requirement, and a presumed lack of competency, is occasionally used as a mechanism to identify a decision-making proxy so that informed consent can still be secured. Proxies are often parents of infants, adult children of the elderly, or spouses, and these individuals are believed to have the patient’s best interests at heart.

As the readings this week explored the different dimensions of ethics, morality, culture, and choice, there were a few instances in which informed consent was overlooked, either blatantly or through more subtle mechanisms. In Adriana Petryna’s piece about globalized clinical trials and variability, she discusses the 1996 case of a drug called Trovan, manufactured by Pfizer, Inc. The industry team of Pfizer, upon hearing of a bacterial meningitis outbreak, took to Nigeria to administer the Trovan drug – an administration that ultimately killed 11 children. Petryna notes that the informed consent forms from this case were backdated, essentially making them null and void. The larger question here is whether or not informed consent falls under Petryna’s argument of “variability.” Do the contextual factors, like the meningitis outbreak and Pfizer’s premise of humanitarianism, discount the importance of informed consent? Is it ever appropriate, even in these outstanding circumstances, to strip someone of their right to make a decision about their own care?

From a more Western perspective, there was also a brief discussion in Rapp’s chapters about what it means to make decisions based on fully informed consent (p. 130). Rapp suggests that many of her informants were lacking a full understanding of the range of conditions that amniocentesis can detect, instead defaulting to the more common and easily constructed “Down’s Syndrome” as a catch-all. Does this challenge the notion of informed consent, on the grounds that women are perhaps not entirely clear about what a “positive result” may mean, including the social impacts of raising a child with a chromosomal abnormality? Is it wrong to expect a woman to make a decision without understanding all of the dimensions, or is it enough for a woman to decide, either instinctively or through counsel, with whatever information she feels she needs to make a decision? Below, I have included a commonly used informed consent form for amniocentesis. Does the document adequately outline the necessary information for an individual to make an informed choice about her care? Does there need to be an extended conversation about the nature of the amniocentesis test accompanying this document, thus allowing for a discussion of the ever-changing concerns shaped by a patient’s present moral landscape?

http://www.enatal.com/GAConsentForms/AMNIO.pdf

Informed consent is an important and necessary component in today’s medical world, at least within the United States. But for something that seems so straightforward, in practice there emerges a substantial amount of “gray area,” related to competency, the amount of information needed to ensure fully informed consent, and the place of informed consent in more variable, non-Western contexts. In cases of ambiguity, is it better to err on the side of caution and use informed consent as a moral vehicle to acknowledge a patient’s fundamental rights, or does the process become a hindrance that stalls the delivery of needed care from an expert provider? And, finally, does the necessity of informed consent vary from person to person, and across situations, or is it a non-changing entity crucial to public health, anthropological, and ethical intervention?

http://https://s3.amazonaws.com/lowres.cartoonstock.com/medical-informed_consent-consents-surgeons-surgeries-operating_rooms-shrn2774_low.jpg

Technologically-mediated death and the embodiment of prolonged dying

This week’s readings explore the intersection of technology with healthcare.  In particular, a number of the readings broach the subject of death—what death means, how technology has impacted processes of dying, and how meanings and conceptualizations of death have changed.  I was particularly intrigued by Kaufman’s discussion of “life-prolonging” technologies like dialysis, liver transplantation, and cardiac re-synchronization therapy devices (CRT).  As she argues, the development of these technologies has created a “gray zone” of sorts between life and death.  They offer no cure, but they increase life expectancy.  In other words, they prolong the process (because death is, indeed, a process) of dying.  I thought the following video might be useful in thinking about some of the themes of this week’s readings.  Specifically, the interplay of technology and dying.  In the video, a girl named Claire Wineland candidly discusses her experience living with cystic fibrosis.  She has posted a number of videos ranging in topic from “What it’s like to be in a coma” to “Tips on interacting with a sick person.”  In this video, however, she talks about her life expectancy:

https://www.youtube.com/watch?v=mHfKs6n-mOo

As Caitlin notes, cystic fibrosis is a terminal and progressive disease.  However, “it’s not death or no death.”  Caitlin argues “it is how much you work on your own health that directly determines how long you’re gonna survive.”  Not only that, but if you don’t do the therapeutic work, “doctors are probably gonna guilt you and make you feel terrible for letting yourself die.”  Responsibility is placed firmly in the lap of the sick individual.  Death is not an acceptable choice.  If there are opportunities to avoid dying–usually presented through technological intervention–those opportunities must be taken advantage of.  As Kaufman notes:  “we must because we can” (164).  Where does this unflagging impetus towards sustaining life stem from?  Do we sustain life because we “can” or is there a deeper cultural reasoning?  A moral impetus?

Another issue this video brings up is the embodied experience of dying—something this week’s articles did not directly address.  While Sharp discusses the social process of dying, she does not attend to the lived experience of a prolonged, technologically-mediated death.  In the video, Caitlin mentions that “so much energy needs to be put into staying alive, but yet you know you’re not really going to.  Buying yourself more and more time, but it’s exhausting.”  This brings up the question, what kind of life has value?  What happens when you’re dying faster than everybody else and you know it?  Caitlin mentions:  “I’ve lived my whole life in this bubble of ‘you’re going to die soon.’”  What kind of impact does that knowledge have?  How is a prolonged death physically embodied?  Furthermore, how is a malleable life expectancy embodied?  Caitlin notes:  “Every single time that I get close to that point that I’m supposed to die there’s new technology that comes out, new medicine, new ways of treating cystic fibrosis and then presto! I live for another five years.”  What effects does this uncertainty of survival have on the individual?  Their social network?  Their physicians?

Opting out of forced longevity: the De-medicalization of American Society?

In her book, Ordinary Medicine, Sharon Kaufman contends that the increasingly complicated means by which modern medicine achieves its goals to alleviate symptoms, prevent diseases, and increase life expectance have fundamentally transformed how end-of-life experiences are anticipated and handled. Advanced medical technologies not only made more diseases into chronic conditions, which, in turn, prompts the demand to create more high-tech treatments, but they also start to redefine the ways patients and their family members envision healthcare options. The denial of medical treatment in preference for improved life quality is perceived more and more as a problematic, if not an unethical choice.

On the other hand, The New York Times published an article this summer stating that the rates of major age-related chronic illnesses, such as cancer, dementia, and heart disease are, in fact, on the decline, especially in developed nations such as the U.S. and European countries.

http://www.nytimes.com/2016/07/10/upshot/a-medical-mystery-of-the-best-kind-major-diseases-are-in-decline.html?_r=0

For instance, although still a leading killer, deaths caused by heart diseases (HD) such as stroke, or sudden cardiac arrest, have decreased for more than 30 percent from 2000 to 2012. Whereas physicians and medical scientists speculated that factors such as better prevention programs, healthier lifestyles, and higher quality medical treatment might contribute to the declining rates of major chronic diseases, these reasons, even all taken together, could not fully account for what is currently happening. Interestingly, this New York Times article also points out that, even though HD-related mortality rates have been on the decline for nearly more than half a century, lately, medical researchers have noticed that the rate of this decline appears to be decelerating.

How do we reconcile this apparent disparity between Kaufman’s ethnographic observations, through which she claims that the development and expansion of biotechnology has rendered more old-age related diseases chronic, and the New York Times column that depicts a conflicting social reality? One could argue that the medical report cited by the New York Times, which was originally published in a medical journal JAMA Cardiology, examines only the mortality rate due to heart diseases, while paying scant attention to the living conditions of those who choose to prolong or sustain their lives by accepting intrusive medical interventions, such as the implantation of cardiac defibrillator.

http://cardiology.jamanetwork.com/article.aspx?articleid=2530559

Even so, Kaufman’s thesis on the medicalization of old age still seems somewhat inadequate in elucidating, for example, why there has been a slow down in the decline of HD mortality rate since 2010.

As we have already touched on during our last class discussion, maybe an incipient sociological/anthropological phenomenon is taking place in American society today, where informed patients and their family members have become exceedingly disenchanted with biomedical procedures and pharmaceutical products. If this is the case, instead of studying the medicalization of American society, perhaps we should begin to study the de-medicalization of American society? Further, is the distinction between medicalization and de-medicalization a new manifestation of global inequalities, where individuals from less developed countries have just begun to fetishize biotechnologies, compared to the privileged, who have already decided to opt out of forced longevity for the pleasure of living.

*For an example, see the story why Lenard Cohen decided to pick up smoking on his 80th birthday

http://www.nytimes.com/2014/09/21/opinion/sunday/too-young-to-die-too-old-to-worry.html

 

 

 

 

A New Model of Care: How Should the Medical System Focus on Patients?

In the last decade, many players in the medical community—including health care providers, insurers, and policy makers—have moved towards a model of “patient-centered care”. A 2012 article in Health Affairs provides a good description of the ideas surrounding patient-centered care in various clinical specialties:

http://healthaffairs.org/blog/2012/01/24/patient-centered-care-what-it-means-and-how-to-get-there/

While the model was designed to save money while improving patient care (as most healthcare initiatives are designed to do), the patient-centered care model employs a focus on improving the doctor-patient relationship through better communication and increased empathy; physicians who practice patient-centered care employ tools that continually question “patients to assess their needs and the effectiveness of the care they are receiving.” Not only does this model produce better health outcomes, but patients often report reduced symptoms and a higher degree of overall satisfaction.

This kind of relationship is detailed by Danielle Ofri in her 2013 book “What Doctor’s Feel”, described below:

http://www.nytimes.com/video/science/100000002281755/the-doctor-patient-relationship.html

In chapters 14 and 15 of “The Illness Narratives”, Kleinman presents “a practical methodology in the care of the chronically ill… captured by the words empathetic listening, translation, and interpretation… meant to counterbalance, not replace, the standard biomedical approach to the treatment of disease processes.” While Kleinman’s ethnographies were written decades before the concept of patient-centered care became mainstream, his ideas are clearly in line with this model of care. While these ideas are promising and appealing (and working well in many healthcare facilities), the reality of many healthcare systems is that it is incredibly challenging to balance this kind of care within the time constraints that most physicians face. Where should the line between completeness and efficiency be drawn in the doctor-patient interaction? How much of this burden should be placed on the physician, and what parts of this model might best be relegated to other clinicians (like nurses or physician’s assistants)?

Livingston’s Chapter on “The Moral Intimacies of Care” in Improvising Medicine describes many of the same issues, but in a medical system where nurses often provide the primary care-giving. While the emotional component of care-giving is potentially more important in an oncology setting than it is in acute care settings, the discussion of empathy, morals, hope, and faith is certainly pertinent to many other specialties, especially primary care. If we could create an ideal patient-centered care model, what would the role each member of the care giving team be?

Many medical schools, including Brown’s Warren Alpert Medical School, are encouraging this kind of empathy training during their medical training. Last year, an art exhibit called “Beyond the Diagnosis” was featured at the school and encouraged the humanization of patients.

http://www.browndailyherald.com/2015/02/20/med-school-exhibit-takes-people-first-approach/

Compared to Good’s description of the dehumanization of the medicalized body in “How Medicine Constructs Its Objects”, how could this kind of training improve the type of care that new physicians provide to their patients? Can medical schools teach the appropriate balance of empathy and clinical detachment ‘necessary’ for effective care and treatment?

The potentiality and challenges of understanding illness through cultural interpretation

As medical anthropologists, we have an important stake in reforming and moralizing health care practices when the opportunity arises. What do we accomplish by aspiring to this lofty goal? We are privileged in a sense to do this work because our methodological approaches allow us to collect knowledge about the various healing practices that exist simultaneously (biomedicine and traditional healing), we can concern ourselves with documenting strengths and weaknesses of systems of “caring”, and we have access to analyzing the historical processes and myths that propagate culturally specific illness narratives. Lock’s definition of local biologies in “The turn of life – Unstable meanings” (1995) got me thinking about the ways in which people of various cultures understand their relationship to illness and the larger implications of socially stigmatize or legitimize that experience. To start off this discussion, I reflected on folk healing or folk medicine, which typically anchors illnesses through cultural interpretation.

https://www.youtube.com/watch?v=EoV3D49Qm94;http://www.ebay.com/itm/AGAINST-THE-EVIL-EYE-CANDLE-KIT-QUITAR-EL-MAL-DE-OJO-WITH-FREE-U-S-SHIPPING-/272275510629

Traditional healing takes on many forms. The first video shows a curandero conducting a limpiada or spiritual cleansing ceremony. The curandero/a proceeds to smack herbs deep onto the body. Not shown on the video, but afterwards, he will proceed to rub a raw unbroken egg, which is thought to absorb energy, up and down the skin to determine the potential ailment and provide a diagnosis. Most of the time, their explanation is that a person has mal de ojo (evil eye), which is caused when someone looks at you maliciously or with jealousy. This negative energy, physically manifests itself into stress, migraines, insomnia, etc.

From the comments, there are various questions about the authenticity of this activity. You can buy a kit and become trained in this form of activity in just a few weeks (see link to product if you are interested); but suspending disbelief for a minute, how would an anthropologist go about interpreting and analyzing this phenomenon? What assumptions are we making about the culture that engages in these practices? What implications (if any) exist for the individual body, for the social body, and political body when people have carved out a space to justify such an explanation? Is it useful to utilize our research as a means of disseminating knowledge about folk medicine (or other findings) where biomedicine (or an alternate form) already exists and works?

http://www.nytimes.com/2012/09/15/us/life-went-on-around-her-redefining-care-by-bridging-a-divide.html?_r=0
This article introduces the story of Lia Lee, daughter of Hmong refugees suffering from “quag dab peg” or epilepsy. Observe the tension between Lia’s parents and the rest of the world as each party tries to make sure Lia is cared for adequately. Oths (1999) describes mythological concerns about the shortcomings of research investigating culturally specific illness. In particular, she does not see the individual as a good unit of analysis. What become the appropriate scale to look at a culture specific illness? Despite being an ethnography of one person, the “Spirit Catches You and You Fall” (1997) does a tremendous job at looking at the family’s interpretation of caring for their severely epileptic child, the Hmong and American assessments of Lia’s condition, the social implications that followed because of the collision of these two cultures. How is disease, illness, and healing changing in the wake of migration and globalization?

http://brainblogger.com/2014/09/03/is-anorexia-a-modern-culture-bound-disorder/
When thinking about culturally specific illnesses, I came across anorexia nervosa and bulimia as examples of modern culturally bound disorders specific to industrial nations. This had me reflect on my own understanding of what I look for when thinking about the universality of particular experiences. Maybe it is naïve to think that eating disorders and body issues are a shared experience across the world, but I realized I thought of it this way until I read Lock’s work on aging and menopause which illuminated me to think that phenomenon that is familiar to me, may be perceived, experienced, and spoken about differently for various reasons by someone else. If I am conducting fieldwork, I need to be especially conscientious of this and read between the lines, attempt to utilize cultural relativism as a framework, otherwise I will not be adequately acknowledging or describing the realities that I attempt to capture.

Should we ‘still’ only have two genders? The current state of the gender binary in America.

Gender Binary: https://www.youtube.com/watch?v=fd-iOCnbi2o&feature=youtu.be

Gender Dysphoria: https://www.youtube.com/watch?v=9N12fV9gOhs&feature=youtu.be

 

Stop Asking Me When I’m Going to Really Transition http://www.mtv.com/news/2428003/genderqueer-transition-trans-awareness/

 

In thinking about this week’s readings, I’m using the provocative question that Anne Fausto-Sterling asks at the beginning of chapter four of her book, Sexing the Body, to think about contemporary understandings of gender, sex and sexuality in the mainstream American media. Extrapolating an idea from Fausto-Sterling’s book, that scientific understandings, research and medical practices for biological sex are shaped by social understandings of sex and gender, how might current representations and changing ideas about the binary gender system in the U.S. led to shifts in the way that we research sex and gender today?

 

For discussion, I am providing examples from the work of one genderqueer, gender non-binary, gender nonconforming activist, to think about how the growing acceptance, and simultaneous attempts at regulation of diverse sexualities and gender expressions, are embodied and challenged in daily life. How do people who are non-binary reside within a binary system?

The first video is simply an explanation of the gender binary, doing so by comparing binary computer systems with the notion of binary people. The idea that people are not computers, they do not fit into a Manichaean model where they have to be one thing or another is an interesting question to consider as anthropologists. How do we capture the messiness of gender and gender identities in our work, especially when doing gendered studies on groups of people who identify primarily as men or women? Do we need to create separate categories for additional genders, or should we move to recognize fluidity of gender within the accepted binaries?

Also, it tangentially brings up another point that I find interesting in Fausto-Sterling’s book, which is the role of technology, specifically increasingly accurate medical technologies for identifying the binary sex of a fetus, or for “correcting” the sex of a child to become one of the two “normal,” accepted genders. How can we think about the continuously evolving role of technology in shaping our contemporary views on sex and gender? How much does technology shape our contemporary understanding of gender identity?

The second video about gender dysphoria is a provocative comment on how understandings of gender vary, even among cisgender people. It specifically addresses how not inhabiting the “ideal” body type in our culture or having gendered behaviors that do not fit the masculine or feminine understandings of gender can cause body dysphoria in a wide variety of people. How can we use this idea of gender dysphoria as a more general phenomenon in American society, to consider elective procedures like plastic surgery, as a phenomenon of gender dysphoria? How does this reflect the ways that people think about their bodies, (such as in Scheper-Hughes’ discussion of body image 16-18), as both and a representation of their individual self, and as a social or symbolic representation of their gender identity?

Finally, I have included the last article about the process of transitioning, and the perception by others of a person who is gender non-binary and therefore has not “fully” transitioned into a binary recognizable gender or male or female. This discomfort/prejudice with people who are not quite male or not quite female is pervasive, and Fausto-Sterling addresses this as both a historical and contemporary concern, highlighting the dangers of inhabiting the space between male and female genders (110-1). The idea that people who are transgender are just transsexual people who have not yet transitioned yet to be fully male or female reflects the current state of the gender binary in America, and comes with social, physical, and legal risks of being “discovered” as not fitting within the gender binary.

As an example, consider this video The Daily Show made on Trans Panic and the legal and social persecution of trans people in the U.S.: https://www.youtube.com/watch?v=PIvCh3EQv1Q . The targeting of trans people by the legal system essence criminalizes “being transgender.” Just inhabiting a transgender body, can be construed as criminal. How do we understand the physical and social violence inscribed on the bodies of people who cannot be easily categorized into our gender binary system?

Finally I will include some questions for further thought:

How does the gender binary function as a means of social inequality in the U.S.?

Is it possible to change social perceptions of transgender people without changing from a binary gender classification system?

How might the legal targeting of trans people, especially considering the incarceration rate, be detrimental to social perceptions and ultimately bias research on trans issues?

Can biological studies of transsexual or transgender bodies be useful for trans activism in the U.S.?