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Come check out my new encyclopedia article, End of Life Choices (pp. 594-605), in the award-winning:

 

9780080970868

Winners of the 40th Annual PROSE Awards were announced at the annual Professional and Scholarly Publishing (PSP) Conference in Washington, DC on Friday. PROSE honors the best in professional and scholarly publishing, as judged by peer publishers, librarians, academics and medical professionals.

Competition was “fierce” this year, according to AAP, with the competition attracting a record 551 entries of books, reference works, journals and electronic products in more than 54 categories.

Elsevier received eight first-place awards, including the Award for Excellence in Reference Works for the International Encyclopedia of the Social and Behavioral Sciences edited by Dr. James D. Wright

Award for Excellence in Reference Works:

International Encyclopedia of the Social and Behavioral Sciences

Editor-in-Chief, Dr. James D. Wright

This 26 Volume, second edition offers a source of social and behavioral science reference material that is broader and deeper than any other. Undergraduates, graduate students and researchers will gain a solid understanding in the interdisciplinary social and behavioral sciences. The new edition is the ideal starting point to research and studies as entries are thorough and complete with references enabling users to push their research forward.

This second edition provides a full update to the original text published in 2001 and includes over 3,900 articles from over 7,000 international and authoritative contributors. It covers rapidly evolving subjects, including psychology, neurology, evolution, artificial intelligence, and human/computer interaction.

“…represents a grand…gesture of accomplishment, fulfilling the encyclopedic 20th-century ideal of an all-encompassing corpus of work. Summing Up: Recommended.”–CHOICE, International Encyclopedia of the Social & Behavioral Sciences, Second Edition

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Science vs. Blacks

 

The Immortal Life of Henrietta Lacks traces the story of a modern medical miracle. However, this account is not merely medical or technological as it has been largely understood. Rebecca Skloot delves far into the unseen foundation of this medical miracle, a woman named Henrietta Lacks. Skloot explores Henrietta’s background and life, her family, her medical history, and finally her death. Through this exploration, one theme arises continually: the conflict between of blacks and medicine.

Considering the atmosphere between doctors and patients in the mid-20th century, Skloot writes,

“This was a time when ‘benevolent deception’ was a common practice…Doctor’s knew best, and most patients didn’t question that. Especially black patients in public wards. This was 1951 in Baltimore, segregation was law, and it was understood that black people didn’t question white’s people’s professional judgment. Many black patients were just glad to be getting treatment, since discrimination in hospitals was widespread” (63).

 

With extenuating factors stemming from the history of slavery, segregation, and discrimination in the United States, it is no surprise that that relationships between mostly white doctors and their black patients were (and largely, still are) relationships fraught with conflict, tension, and hostility.

There is a wide variety of mistreatments that have created a rift between the medical and African-American communities. These mistreatments range from the mildly paternalistic attitudes where doctors practice essentially medically harmless yet ethically questionable behavior to extremely health-compromising behaviors.

The history of relations between blacks and medicine has created mistrust on the part of many within the African-American community. This mistrust is caused by factors such as disparate treatment among amid races, a patronizing attitude among medical professionals, and the many horrifying unethical experiments that have harmed thousands of black Americans.

One of the most cited of these experiments is the Tuskegee syphilis experiment. In this study, researchers let African-American men with syphilis die painfully and slowly die, even though they had penicillin that could cure them. Although this study is horrific and certainly unethical, there are a number of other abuses of African-Americans in medicine. Hopefully, with time there can be a healing between the medical profession and blacks in America.

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To Defy and Deny

Attempts to defy and deny death are part of our heritage.  Through many outlets we hear of possibilities to end aging, sickening, dying.  Cosmetic and medical developments attempt to thrust up an iron bar, staving off the oncoming approach of eminent death.  While techniques and procedures may distract death for a certain amount of time, the knowledge of its lurking presence always remains.  In a society that Philippe Aries (1974) describes as viewing death as shameful and forbidden, attempting to defy death is in fact conforming to the culturally proscribed notion of denying death.

The sense of shameful and forbidden death can be seen in various places.  In “The Masque of the Red Death”, Edgar Allen Poe describes a personified death, stalking the land.  During a plague Prince Prospero barricades himself and his courtiers into a castellated abbey free of death.  During a colorful masquerade ball, a

The Masque of The Red Death

figure appears.  This solemn, dark presence squelches the revelry of the court. Its blood-flecked countenance, once recognized, inspires a whisper, “a buzz, or murmur, expressive of disapprobation and surprise — then, finally, of terror, of horror, and of disgust.”  The prince accuses death of blasphemous mockery, but is struck down after attempting to flee.  The courtiers meet the same bloody fate.  “And Darkness and Decay and the Red Death held illimitable dominion over all.”

Here we see a description of an attempt to purge a place of death, to create a social space that is untouched by the vile manifestation of death.  This defiance of death backfires, creating a restricted location for death to stalk his victims.  Edgar Allen Poe’s works are popular for a reason; of course, he utilizes expert stylistic measures and writing devices, but he also understands and exploits the human condition.  Death is feared and despised.  Attempting to defy it is our greatest hope; it catching up with us, making a mockery of such defiance, is our greatest fear.  Poe’s story accords with Aries’s description of feelings towards death; not only is it feared, its presence is seen as revolting and shameful.  When thecourtiers recognized the masked figure, their response was disgust as well as horror.

This disgust with death remains a feature of current culture, and is seen in current writings.  An article attempting to deny the force of death recently appeared on the news blog/website, Huffington Post.  The article, “Death and Dying Quotes: Reframing the Question” describes reasons why death might not be such a bad things, as well as listing quotes about death and dying paired with abstract stock images of nature and human interaction.  The article describes the benefits of death: death makes us appreciate life, it levels the playing field, it gives meaning to life, it forces us to live with the unknown, it teaches us to accept our limitations, and it is good for the economy.  The last is the most interesting.  The statement is continued: “Produce goes bad if left too long in the refrigerator. Flowers die, and we buy new ones. If everything and everyone stayed vibrant, we’d have no need for health-care, garbage collection, tag sales, a cosmetic industry or most plastic surgery. Death is a booming industry!”

This is followed by quotes regarding death, many of which belittle death’s ultimate influence by suggesting that there is a continuance of life, whether on earth or in an afterlife, such as the first quote: “Seeing death as the end of life is like seeing the horizon as the end of the ocean.”

While the article presents itself in direct opposition to Aries’s statements regarding our thought of death, it can be seen as another form of death denial.  By stripping the importance from death by suggesting that life continues elsewhere denies death.  By equating human death with the death of flowers and produce, death is robbed of its horrifying, blood-flecked appearance.  This protects us from the disgust associated with death.  Instead of being stalked from room to room, chased and stabbed by a masked figure we wilt like flowers, only to be replaced.

Works Cited

Aries, Philippe. 1974.

Western Attitudes Toward Death: From the Middle Ages to the Present. Baltimore and London: John Hopkins University Press.

Johnson, Judith. 2010.

“Death and Dying Quotes: Reframing the Conversation”. The Huffington Post.

http://www.huffingtonpost.com/judith-johnson/death-dying-quotes_b_776258.html#s177122.

Poe, Edgar Allen.

“The Masque of the Red Death.” Available at: http://www.online-literature.com/poe/36/.

Picture: http://hcforgottenclassics.blogspot.com/2007_10_01_archive.html

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The above clip is from a documentary titled A Certain Kind of Death (2003), which deals with the question of what happens to a corpse when there is no “next of kin.”  If you were to watch the entirety of the film, you would see steps and processes the case workers and funeral home staff goes through in an attempt to bury or otherwise dispose of the corpse.  One of the main issues that is a recurring theme is that of money.  How will each service be paid for? If the individual had no family, then what assets of theirs can be sold to cremate or bury them? What did the deceased want to happen to their corpse?  The film navigates through these different terrains as the “fly on the wall:” silently observing how workers cope with theses questions while conducting a business whose focus is to quickly rid the living of the dead.  Parts of this documentary may seem insensitive, but it reflects a theory presented by William Bogard in Empire of the Living Dead (2008).  Bogard argues that through death the individual’s corpse becomes a commodity, a means (tool) of possession and mastery that serve the living’s desire for a type of biopower. To dig deeper into the theoretical framework, the corpse becomes a product of capitalism, a la Marx’s notion of surplus capital, where the corpse, and parts of which, become more valued than the work (or life) put into them.  A prime example of these theories is Organ Donation.

Monty Python: Meaning of Life

While we can live without certain organs, life cannot be sustained without the necessary ones. We can see this with the clip from Monty Pythons Meaning of Life.  It is an exaggerated commentary on the superior value of organs vs. the body as a whole, but it nonetheless opens up the topic for reflection.  I sit here a living, breathing, functioning (thanks to ample cups of coffee) human body comprised of different organs and experiences.  I will live and experience life through this flesh and bone apparatus until the day I die.  Upon death my body will become the “corpse” that is described by Bogard as an object of material culture.  It no longer matters what life existed when this transition occurs; what becomes important is what can be gained through the treatment and exchange of this new commodity.  As an organ donor my internal “parts” will become the most valuable source of power. Through their extraction and donation life can be prolonged and manipulated, therefor allowing the new owner to continuing their contribution to Capitalism through work. Bogard refers to the organ’s (or DNA for that matter) ability to “live” past their initial owner as the “Zombie” effect.

No, not those type of Zombies.

The “Zombie” effect is profitable, as Bogard (2008) states it is “useful.”  The following, taken from the Mayo Clinics web-page on organ donation (http://www.mayoclinic.com/health/organ-donation/FL00077) demonstrates just how useful these organ-commodities can be to the still living:

“Enough people to populate a small city — over 100,000 — are waiting for an organ donation in the United States. Unfortunately, thousands never get the call saying that a suitable donor organ — and a second chance at life — has been found. It can be hard to think about what’s going to happen to your body after you die, let alone donating your organs and tissue. But being an organ donor is a generous and worthwhile decision that can be a lifesaver.”

The above is just one of the many sites aimed at showing the value of the organ, and it illustrates that in death the corpse becomes a dividable object whose individual parts are more valued due to their ability to prolong life and assist with increasing knowledge of the living condition. 

To conclude, I’d like to reflect on a statement from Bogard:

“A dead body is not necessarily a corpse. It only becomes one in virtue of a
social machine that needs dead bodies, and the flows of organs, tissues, and
fluids they generate, to function.” (pg. 188)

The social machine is a product of Modernity and Capitalism, and it’s goals can be translated simply into Control and Capital. The control of the population and resources in the sense of the corpse is fueled by the organs, tissues and fluids which help keep the cycle and illusion “alive.” This isn’t meant to be a bleak view of death and dying, but instead a fresh perspective on the ways that even through death we can still contribute to our mother-culture and sustain its existence.

 

Bogard, William. 2008. Empire of the living dead. Mortality 13(2):187-200

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     According to Renee Anspach, in chapter four of her book, Deciding who lives: Fateful choices in the intensive-care nursery, there are two different decision-making models that parents and physicians will potentially utilize when it comes to making life-and-death decisions about their gravely ill infants (1993).  The first is the assent model where “parents are viewed as giving assent to a decision members of the nursery staff have already made” (1993, 87).  The second model is the informed consent model.  In this model “parents are treated as the principal participants in the life-and-death decisions” (1993, 87).  Although Anspach did her study in intensive care nurseries exclusively, these models can be extrapolated to include end-of-life decisions for all stage of life.  For that reason I will use “family” interchangeably with “parent” in my argument below.

SPIRITUALITY IN HEALTH

     There has been a growing trend making its way through medical communities over the past decade that strives to integrate spirituality into everyday medical practice.  The George Washington Institute for Spirituality and Health (GWISH) describes spirituality as

…a factor that contributes to health in many persons. The concept of spirituality is found in all cultures and societies. It is expressed in an individual’s search for ultimate meaning through participation in religion and/or belief in God, family, naturalism, rationalism, humanism and the arts. All these factors can influence how patients and health care professionals perceive health and illness and how they interact with one another.

     What results is a more compassionate-driven form of healthcare that strives to treat patients in a more holistic manner.  This means the patient is treated more as a “person” with thoughts and feelings, as opposed to a “patient”, merely a biological and mechanical machine.  This new approach to medical care, with its emphasis on “bringing increased attention to the spiritual needs of patients, families and healthcare professionals” (excerpt from the GWISH misson statement), I argue, eradicates an assent model approach to end-of-life decision making, rendering the informed consent model the remaining viable option.

THE ASSENT MODEL

     The assent model to end-of-life decision making emphasizes the “competence gap” between physicians and their patients (Anspach 1993, 89).  In this model the physicians and their health care staff consult families as to how to proceed with care only after they have reached an accord among themselves.  Some physicians may present a lack of options to ensure the families will concede to their ready-made decisions.  Others may not consult the families at all; which often happens when health care providers have made the decision to continue treating a patient, to try to prolong life (Anspach 1993).  This type of decision making marginalizes the participation of the family and leaves little room for the consideration of their spirituality.  Therefore, the assent approach removes spirituality from the decision-making process.

THE INFORMED CONSENT MODEL

     In contrast, the informed consent model seems to welcome spiritual considerations.  In this model, physicians “facilitate greater [family] involvement by presenting [families] with a range of prognostic outcomes” (Anspach 1993, 89).  More options allow a family to weigh each option against their spiritual beliefs or values.  This facilitates a higher probability that a carefully considered decision will be in accordance with those spiritual beliefs and values.  Anspach is right that “[families] bear the ultimate consequences of life-and-death decisions” (1993, 86) and for that reason, they must be given the opportunity to feel comfortable with those decisions.  Therefore, spirituality must be considered.

CONCLUSION

     In the growing trend of spirituality in health, the family’s beliefs and values play a central role.  The assent model of life-and-death decision making simply leaves little room for spiritual considerations as medical decisions are largely made and acted out without consulting the patients’ families.  The informed consent model facilitates family involvement to a larger degree and therefore makes room for consideration of spiritual beliefs and values.  In modern medicine, it seems then, there is no more room for the assent model of end-of-life decision making.

References:

Anspach, Renée R. 1993. Producing assent: Parents, professionals, and Life-and-death decisions. In Deciding who lives: Fateful choices in the intensive care nursery, 85-126. Berkeley: University of California Press.

The George Washington Institute of Spirituality and Health. http://www.gwish.org. (accessed November 10, 2010).

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We read some of Giorgio Agamben’s Homo Sacer (1998) where he talks about how the Nazi concentration camps are “exemplary places of modern biopolitics” (1998:4).   Agamben wanted to show how Foucault’s biopower comes to be exerted on individuals.  This short film is a beautiful example of human agency in action against the constraints of one of the more intense and unpleasant forms of modern day biopower.  I am particularly struck in this piece by the role of music and how it was used to transform the space these camp residents occupied and how love, in particular a mother’s love, transforms.

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Time of Death

On the dozens of medical dramas that saturate prime-time television, there exists that powerful moment when the nurses and staff, crammed into a hospital room, look to the doctor and wait as he attempts to save a patient’s life. The doctor (it’s generally a he) over-exhausts his resources and exasperatedly declares, “Time of Death: …”. These dramas perpetuate the contemporarily popular notion that there is a distinct moment of death, most identifiable by qualified medical professionals.

In Twice Dead: Organ Transplants and the Reinvention of Death, Margaret Lock considers the social construction of death and dying. “In so many argument, people start out from the assumption that death is an event that can be medically confirmed…this is a reductionist position that assumes that death is merely a physical fact that this is its totality. Even those who argue for biological death as a process usually assume a factual endpoint of death. It is quite possible to conceive of social death as of primary significance and biological demise as secondary to it” (374). Lock posits that the transformations in understandings of the moment of death have led to a highly mechanized perception of death and dying.

A recent phenomenon in India both challenges and reasserts the “time of death” ideology. In Chandigarh, India, doctors have created guidelines that will allow patients who are considered “irrevocably-ill”, along the lines of suffering from brain stem death or in a deep coma, to be taken off ventilators and other life-supporting machines. The argument behind these guidelines and their purpose has been that in cases where the possibility of recovery is negligible, patients should not be left vacillating in a non-humane vegetative state. Instead, the clarity of the patient’s condition under the guidelines would allow for a death with “dignity and peace”.

On one hand, the creation of these end-of-life guidelines by Indian doctors challenges prevailing Western treatment of death. With the creation of many modern technologies, there has been increasing practice of the prolonging of life, often coming at the cost of unjustifiable pain and suffering. By creating these guidelines, these doctors are asserting that elongation of life is not necessarily the best objective for many at the end of life.

On the other hand, the creation of these guidelines very much reasserts the view that there is a detectable moment of death.  “Identification of the moment of brain death was designed primarily to avert legal complications, but it was also necessary to reassure the public. The very existence of ventilator-dependent patients raised two concerns: first, the fear of being counted dead before one’s time and overhastily designated an organ donor; second, the fear of being kept alive too long, as a ‘vegetable,’ with severe, irreversible brain damage, but not technically brain-dead” (78). By resisting the use of ventilators on what are deemed irreversible diseases, the doctors in India are maintaining that the patients in question have already reached what Lock would classify as their social death and now should be able to reach their biological death with dignity.

 

References:

Bharti, Vishav, “Doctors come up with ‘death with dignity’ guidelines”. Hindustan Times. http://www.hindustantimes.com/Doctors-come-up-with-death-with-dignity-guidelines/Article1-610665.aspx. 10/25/2010.

Lock, Margaret. Twice Dead: ORgan Transplants and the Reinvention fo Death. 2002. Berkeley, CA: University of California Press.

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