Showing 11 - 20 of 473 annotations tagged with the keyword "Medical Ethics"

Annotated by:
Schilling, Carol

Primary Category: Performing Arts / Film, TV, Video — Secondary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The opening of the documentary Fixed: The Science/Fiction of Human Enhancement is meant to startle. A young woman (disabled performance artist Sue Austin) in a motorized wheelchair fitted with transparent plastic fins gracefully glides underwater around seascapes of coral and populations of tropical fish. The scene dislodges expectations about what wheelchairs can do and where they belong. It creates what for many are unlikely associations among disability, wonder, joy, freedom, and beauty. Watching Austin incites questions about what this languid and dreamy scene might have to do with human enhancement, which more predictably brings to mind dazzling mechanical, chemical, or genetic interventions that surpass the ordinariness of a wheelchair and extend human capacities. But this gentle scene opens the way for the film’s conversations about the ethics and meanings of human enhancement that emphasize perspectives by people with disabilities.  

Regan Brashear’s film features interviews with and footage of people living with disabilities as they move in varied ways through their environments—home, workplace, airport, therapy lab, city street. Photographs, news footage, and performances by mixed-ability dance companies complement their stories. We also hear from a transhumanist, academicians, and activists. Together they express a wider range of views about human enhancement than seems possible in an hour-long film.  

Often contrastive views are paired or clustered. For instance, double amputee Hugh Herr, Director of MIT’s Biomechtronics Group, brags that his carbon-fiber and other prosthetic legs will outperform the biological legs of aging peers. His lab develops robotic limbs controlled by biofeedback, and he intends to end disability through mechanical technologies. Gregor Wolbring, a biochemist and bioethics scholar who was born without legs, regards himself as a version of normal and rejects being fixed. “I’m happy the way I am!” he exuberantly proclaims. Rather than strive for normalcy through restorative technology, Wolbring urges acceptance of imperfection.  

Altogether, the interviewees raise questions about how to respond to differences among human bodies: focus on corrections toward achieving a concept of “normal”? accept diversity? extend human potential? The interviews call out underlying assumptions about disability that influence our answers. Do we assume that disability is an aberration that should be erased? A condition located in individual bodies? A condition brought about by unaccommodating social and built environments? Or, as disabled journalist John Hockenberry proposes, “a part of the human story”?

Fixed
also asks what the social and ethical consequences of pursuing enhancements might be. Do they equalize opportunity? Do they misplace priorities by channeling attention and resources away from basic health care and ordinary, essential technologies, such as reliable, affordable wheelchairs? Are biological, chemical, and mechanical enhancements indispensible opportunities to extend human experience, as transhumanist James Hughes claims? Do we have an ethical responsibility to enhance, whether to correct or extend?
                                                                                              
Hockenberry mentions that we already enhance. Think of eyeglasses, telescopes, hearing aids. People with disabilities, he points out, are typically the first adopters of technologies, such as computer-brain interfaces, that are destined for wider use. Archival film footage of warfare during this discussion reminds us what many of those uses have been. Should we worry, he asks, about using people with disabilities as research subjects? Or should we say with recently paralyzed Fernanda Castelo, who tests an exoskeleton that braces her body as it moves her forward: “Why not”?  

Considering whether we should trust technology to create equality or treat each other equally in the presence of our differences, disability rights attorney Silvia Yee poses the film’s most vital question: “Which is the world you want to live in?” While Fixed gives a fair hearing to disparate answers, the closing image is suggestive. A woman in a motorized wheelchair offers a lift to someone struggling to push a manual chair uphill. She invites him to grasp the back of hers and they roll forward together.

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Annotated by:
Aull, Felice

Primary Category: Literature / Literature

Genre: Anthology (Mixed Genres)

Summary:

This anthology of poems, short stories, and essays derives from the literary magazine, Bellevue Literary Review, which began publication in 2001. The editor of the magazine and her staff have selected what they consider to be the best literary pieces from the Review's first 6-7 years of publication. Like its parent magazine, the anthology focuses on work that addresses the illness experience, health, healing, and the experiences of health care professionals and other caregivers. The anthology is divided into three parts, each of which has several subsections. Part I, "Initiation," looks at patients' introduction to illness and introduction of doctors to medical education and medical practice. Part II, "Conflict: Grappling with Illness," divides into sections on disability, coping, madness, connections, and family. Part III: "Denouement," addresses mortality, death, loss, and aftermath.

Among the 81 authors represented, seven are physicians, and another half dozen or so are in other caregiving professions such as nursing, social work, counseling. Some writers are well recognized in the literary world (for example James Tate, Amy Hempel, Alicia Ostriker, Rachel Hadas, Sharon Olds, Philip Levine, Floyd Skloot, Julia Alvarez, David Lehman, Rafael Campo, and Abraham Verghese -- the latter two are physicians); most of the less well-known others have published in a variety of venues.

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Essex Serpent, The

Perry, Sarah

Last Updated: Sep-07-2017
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The idea for her second novel came to Sarah Perry in a flash (Ref. 1) as her husband was telling her about the 1699 sighting of a serpent or dragon in Henham, a village slightly to the northwest of the town of Essex, where Ms.Perry was born in 1979. The late 19th century events of the novel occur primarily in Aldwinter, a fictional fishing village on the Blackwater estuary.  Divided into 4 books (with titles derived from a 1669 pamphlet on the Serpent), each with subdivisions by month, further subdivided into chapters, the story takes place over 11 calendar months, from New Year's Eve to November, 1892. Although the story does not feel complicated and should not be difficult to describe in a synopsis, it is a tribute to the novelist's Dickensian talents  that in fact it is somewhat complex, involving four couples and their various children and friends and their increasingly intricate relationships, all revolving around the palpable feeling in Aldwinter that the famous Essex Serpent has returned, resurfaced, or decided to re-animate all the lives therein. The protagonist is Cora Seaborne,  a recently widowed free-thinker, adept in biology and natural sciences, and mother of an adolescent boy, Francis, who would nowadays probably receive the label "autistic." After the death of her abusive husband from oropharyngeal cancer, Cora becomes emotionally involved with Luke Garrett, the treating surgeon, an idiosyncratic, brilliant man, who has a bosom buddy, George Spencer (simply called "Spencer"), a very wealthy former medical school classmate. With an introduction from her friends Charles and Katherine Ambrose, Cora and Martha - her intimate companion - visit William (often referred to as just "Will") and his wife Stella Ransome in Aldwinter, where Will is the parish minister and father to three children. The eldest is Joanna, a precocious adolescent girl one imagines, alongside a younger Cora, as a younger version of this novel's author, who describes herself as vibrantly curious of all her surroundings while growing up in Essex as a young girl. (Ref. 2)

With the arrival of Cora and Martha in Aldwinter, the narrative begins in earnest with the development of the mounting anxiety over the mysterious events (a missing boat, unexplained drownings) attributed to possibly a resurgent Essex Serpent besetting Aldwinter; Luke's miraculous operation saving a man named Edward Burton from a knife wound to the heart; the increasingly romantic relationship between Cora and Will, to Luke's dismay; Stella's rapidly progressive pulmonary tuberculosis; the disappearance of Naomi Banks, a friend of Joanna; and an attack on Luke by the same man who had knifed Edward Burton. By novel's end, without spoiling the plot, most loose ends have been cauterized, left more neatly dangling or deftly retied.  


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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Very early in this memoir, Dr. Sandeep Jauhar refers to an essay Sachin Jain and Christine Cassel published in JAMA (2010) that categorizes physicians as knights, knaves, or pawns. His take: “Knights are motivated by virtue…Knaves are selfish…Pawns are passive.” (p.7) Jauhar rides into medical practice as a knight in shining armor on a white horse after years and years of training. Would he be able to hang onto his knighthood?  

The book is divided into three parts—Ambition, Asperity, Adjustment—bookended by an introduction and epilogue. Jauhar’s disillusionment with American health care is his primary theme, and it connects these three parts:  

As a young adult I believed that the world was accommodating, that it would indulge my ambitions. In middle age, reality overwhelms that faith. You see the constraints and corruption. Your desires give way to pragmatism. The conviction that anything is possible is essentially gone. (pp. 5-6)  

Jauhar is comprehensive and unsparing in accounting for the sources of his disillusionment and his fall from knighthood. He was vulnerable to disillusionment from the start having been pushed by his parents in into medicine against his desires. His mother “wanted her children to become doctors so people would stand when we walked into the room,” (p. 21) and his father said that in medicine he “would have respect, wealth, and influence.” (p.133) He put off medical school for as long as he could by first getting a PhD in experimental physics. Finally, 19 years after first starting college he became a practicing cardiologist, though not without almost bailing out of medical school for a career in journalism as he writes in his first memoir, Intern (annotated here).  

Jauhar's first position was as a hospital staff member heading up a heart failure unit. As hospital staff he wasn’t paid as much as physicians in private practice. This differential wasn’t a problem by itself, but because the salary was insufficient for the lifestyle he sought and his wife—a physician also—urged him to provide, “I want nice things for us: a home, safe cars, good schools. They may seem trivial to you, but they are not to me.” (p. 75) This pressure was made worse by his older brother earning twice the income while working at the same hospital as an interventional cardiologist, and as well by all the other physicians in private practice who lived in big houses and drove fancy cars.  

The story then veers into a period when he sheds his knighthood for knavery. Jahaur joins a pharmaceutical company speaker bureau that supports a particular product and quits over his concern that the product may have been more toxic than first thought. Guided by his brother who says, “As much as we hate to admit it, patients are a commodity,” (p. 92) He takes positions with various private physician practices that operate more like procedure mills than health care providers.  

Jauhar does not do well as a knave, realizing “I had made a Faustian bargain. Having my eyes opened to the reality of contemporary medical practice had been painful. Now I had to make a choice. Continuing on this path was leading to ruin.” (p. 257) And so he tells of his adjustment, which for him is finding an “uneasy equilibrium” (p. 258) by continuing to work with private practices, just not as much, and spending more time with his family. Thus, in the end, Jauhar does not a return to full knighthood and becomes something closer to a knight with knavish tendencies or a knave with knight-like qualities.

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The Story of Beautiful Girl

Simon, Rachel

Last Updated: Aug-07-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

On a stormy night in 1968 a retired, widowed schoolteacher in rural Pennsylvania opens her door to find a young couple, she white, he African American, wrapped in blankets, drenched, and silent.  Letting them in changes her life.  They have escaped together from a nearby mental institution most locals simply call "The School."  The young woman has recently given birth.  When Martha lets them in, her life changes forever.   Supervisors from "the School" show up at the door, the young man escapes, and the young woman, memorably beautiful, is taken back into custody.  The only words she is able to speak out of what we learn has been a years-long silence are "Hide her."  Thus she leaves her newborn baby to be raised by a stranger.  The remaining chapters span more than forty years in the stories of these people, linked by fate and love and the brutalities of an unreformed system that incarcerated, neglected, and not infrequently abused people who were often misdiagnosed.  Homan, the young man who loved Lynnie, the beautiful girl from the institution, was deaf, not retarded.  Lynnie was simply "slow," but a gifted artist who recorded many of the events of her life in drawings she shared only with the one attendant who valued and loved her.  Though her pregnancy resulted from being raped by a staff member, the deaf man longs to protect her and care for the baby.  Years separate them; Homan eventually learns signing; Lynnie's sister befriends her and an exposé results in the closure of the institution.  Over those years Lynnie and Homan witness much cultural change in treatment of people like them who were once systematically excluded.  They find social identities that once would have been entirely unavailable to them.  And eventually, after literal and figurative journeys of discovery, they rediscover each other.   

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Annotated by:
Mathiasen, Helle

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

A rare patient narrative from 1812 describes a mastectomy performed before the introduction of anesthesia. This letter from Frances d'Arblay (1752-1840) (née Frances [Fanny] Burney), addressed to her older sister, Esther, details her operation in Paris by one of Napoleon's surgeons.In her childhood and youth, Fanny Burney moved in the best London society; she was a friend of Dr. Johnson who admired her. She served five years at the court of George III and Queen Charlotte as Second Keeper of the Royal Robes (1786-1791). Fanny Burney married Adjutant-General in the army of Louis XVI Alexandre-Jean-Baptiste Piochard d'Arblay in 1793. He had fled to England after the Revolution. They lived in England and spent ten years in France (1802-1812).Burney's mastectomy took place 30 September 1811. The patient wrote about her experience nine months later. She chronicles the origin of her tumor and her pain. She is constantly watched by "The most sympathising of Partners" (128), her husband, who arranges for her to see a doctor. She warns her sister and nieces not to wait as long as she did. At first resisting out of fear, the patient agrees to see Baron Dominique-Jean Larrey (1766-1842), First Surgeon to the Imperial Guard.He asks for her written consent to guide her treatment; her four doctors request her formal consent to the operation, and she makes arrangements to keep her son, Alex, and her husband, M. d'Arblay, away. Her husband arranges for linen and bandages, she makes her will, and writes farewell letters to her son and spouse. A doctor gives her a wine cordial, the only anesthetic she receives. Waiting for all the doctors to arrive causes her agony, but at three o'clock, "my room, without previous message, was entered by 7 Men in black" (136).She sees "the glitter of polished Steel" (138). The extreme pain of the surgery makes her scream; she feels the knife scraping her breastbone. The doctors lift her up to put her to bed "& I then saw my good Dr. Larry, pale nearly as myself, his face streaked with blood, & its expression depicting grief, apprehension, & almost horrour" (140).Her husband adds a few lines. These are followed by a medical report in French by Baron Larrey's 'Chief Pupil'. He states that the operation to remove the right breast at 3:45pm and that the patient showed "un Grand courage" (141). She lives another twenty-nine years. It is impossible to determine whether her tumor was malignant.

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Admission, Children's Unit

Deppe, Theodore

Last Updated: Apr-11-2017
Annotated by:
Clark, Mark

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The speaker of this poem is a nurse who is recalling and attempting to come to terms with a disturbing clinical encounter she’d had the week before.  (I should note at the outset that there’s no indication in the poem as to whether the nurse is male or female.  I choose to think of her as female).  What had happened is that a mother had brought her five-year-old son in for treatment, and the nurse’s exam revealed that the child had second- and third-degree burns on his torso—in the shape of a cross.  The mother, weeping, confessed that her boyfriend had, as a punishment, applied a cigarette to the child’s body—while the mother had held her son.  Seeing the mother’s tears, the nurse considered offering the woman some Kleenex, but could not bring herself to do so.  The child retrieved the box of Kleenex, then clung to his mother’s skirt, and glowered at the nurse.  Then the nurse had participated with three others in prying the boy away from his mother.  In the present of the poem, a week after the encounter, the nurse attempts to deal with the guilt and shame she feels in her failure of professional decorum and compassion—at having failed to rise above her moral judgment against the mother and offer the woman basic human kindness and respect.  In confronting the chaos of her emotions, the nurse turns to a story she’d learned in high school: the story of St. Lawrence.  The significance of her attempt to think with this story can be overshadowed, for readers, by the intensity of the clinical encounter she recalls; but her endeavor is of at least equal significance as the encounter.



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Annotated by:
Clark, Mark

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

The Renewal of Generosity: Illness, Medicine, and How to Live contemplates the phenomenon of generosity as it is realized in the stories of physicians and patients.  For Arthur Frank, generosity is grounded in the willingness of people to give themselves over to dialogical processes of communication wherein participants best realize themselves through relational engagement: generous, dialogical communication leads to a renewal and realization of human being. Health care systems today tend to impede communicative generosity, however, and the result is a de-humanization and de-moralization of both physicians and patients.  As a remedy, Frank proposes, first, that we re-figure our conceptualization of the physician-patient relationship—from the economic or business metaphor of “provider” and “client,” we should turn to the metaphorical conceptualization of “host” and “guest,” which clearly has implications for manner of treatment and communication that occurs in the relationship.  In addition, Frank turns to and thinks with stories of physicians and stories of the ill to reflect on the ways that generosity is realized.  Drawing on the wisdom of the striking philosophical triumvirate of Marcus Aurelius (Stoicism), Mikhail Bakhtin (Dialogism), and Emmanuel Levinas  to amplify the reflections emerging from the physician and patient stories, Frank ultimately proposes “exercises” for training to generate a vivifying generosity within the medical profession, which can in turn lead to a re-humanization and re-moralization for physicians, improved care for patients, and enhanced flourishing for all.



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Annotated by:
Clark, Mark

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

Wandering in Darkness is an intricate philosophical defense for the problem of suffering as it is presented by medieval philosopher Thomas Aquinas.The work addresses the philosophical / theological problem of evil, which might be expressed as follows:  if one posits an all-good, all-powerful God as creator, yet suffering exists in the world, then (a) God must be evil, since he created it; (b) God is less than all-powerful, since suffering came to be in his creation, and he could not stop it; (c) God is evil and weak, since suffering came to be in his creation, and he did not want to stop it; or (d) suffering is an illusion.  No alternative is, of course, very satisfying. In her book,   Eleanore Stump augments Thomas Aquinas’s theodicy by reflecting upon what she calls “the desires of the heart,” a dimension of human experience that Aquinas leaves largely untreated in his consideration.  Stump explores this dimension by breathtaking exegeses of Biblical narratives as narratives: the stories of Job, Samson, Abraham, and Mary of Bethany.  “Understood in the contexts of [these] narratives,” Stump argues, “Aquinas’s theodicy explains in a consistent and cogent way why God would allow suffering" (22).

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Summary:

This is an ethnographic work written by a Swedish anthropologist who has lived in Cairo, Egypt for several years curating the cultural tropes that are woven into the lives of her traditional Egyptian subjects. Malmström sets the scene for her work by describing a 1994 incident wherein CNN broadcast live the female genital cutting of a young girl in Egypt. A secret practice made public, Malmström uses this event to springboard her commentary on how female genital cutting is practiced, experienced, and viewed among Egyptians.  

Female genital cutting is defined as the partial or total removal of external female genitalia for non-medical (i.e. cultural) reasons. This is largely a practice carried out in Africa and some parts of the Middle East. Egypt has one of the highest global rates of female genital cutting, and the cutting usually occurs at the age of 9 years. Many reasons are cited for the cutting, and in Egypt it is done to decrease a woman’s sex drive as well as to fit the standards of beauty (i.e. labia minora are considered unattractive). It had usually been performed by a traditional practitioner, but more recently, this human rights violation has been medicalized in Egypt and is often performed by doctors in an operating room using anesthesia. Even though Egyptian law and Muslim as well as Coptic Christian clerics have issued bans on female genital cutting, the practice continues in secrecy.  

Malmström starts her book by saying that female genital cutting may actually be carried out in large part as Egyptian political protest against the West. She uses excerpts from interviews with women of different generations, social strata, and degree of devotion to Islam to describe their different experiences and opinions on topics that center around womanhood and the many components of womanhood in Egypt.  

While the title suggests that Malmström will tackle female genital cutting  head-on throughout this piece, she actually takes a more circuitous route. She spends several chapters describing other woman-centric issues to familiarize the reader with Egyptian culture. For instance, Malmström describes how sexuality is expected to be expressed at different points in life: in girlhood, adolescence, and after marriage. She focuses on how Egyptian women are expected to straddle many expectations regarding sexuality depending on the context: sexually receptive to the husband only, for instance, but not so much so that the husband struggles to satisfy her.
  One of the most telling quotes regarding the meaning of womanhood is,

“A woman should always be soft towards a man...She should never accuse her husband of anything or argue with him. A woman should be strong and never show her true feelings. A woman must be beautiful. A woman will win through beauty, softness, and through cooking....A woman should not show her sadness because of him [her husband], since she turns ugly, loses her health and eventually, her husband. She should be even softer towards him and give him everything in life” (p. 169).  

Malmström delves into the centrality of cooking, pain, and endurance of suffering in the lives of traditional women and how these items, as well as being “cut” are seen as necessary to the satisfactory construction of Egyptian female identity. This exploration of many parts of womanhood in Egypt allows the reader to attempt to engage in a nuanced understanding of female genital cutting in the context of a broader, textured Egyptian culture. 

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