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.

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.

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?

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?


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:

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.

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.

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





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:

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:

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.

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?