Showing 91 - 100 of 825 annotations tagged with the keyword "Patient Experience"

Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

Entering a school as the first student with a serious disability (cerebral palsy) after starting his education in a "special" school, Christopher Nolan had to develop careful and clever strategies for developing friendships, allowing others their curiosity, and finding ways to use his considerable gifts against the odds of both the disease and the prejudice it bred.  One of his strategies is the inventive, cryptic, poetic, Joycean idiom in which he writes his story.  He did, in fact, succeed in a school where he was accepted as a kind of experiment, in an area of Ireland not known for its progressive attitudes.  In this narrative he moves back and forth between inner life, family life, and life at school, allowing readers to get to know him as a deeply reflective, adventurously social, and courageous human being, living with his debilitating condition with a degree of consciousness that took full account of the losses as well as finding avenues of expression that allowed him, intellectually, at least, full range of motion.  The narrative takes us through his school years where he distinguished himself as a poet and also as a human being for whom life with a disability shaped an extraordinary dexterity with language.

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This Far and No More

Malcolm, Andrew

Last Updated: Sep-12-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

Emily Bauer, mother of two small children, psychotherapist and teacher, social, smart, athletic, and strong-willed, finds, after a curious series of falls and other accidents, that she has ALS, "Lou Gehrig's Disease," a disease that involves slow atrophy of all muscular control, leading to complete paralysis and then death.  The disease is relentless, and treatments palliative at best. 

First in handwriting and later by means of a tape on which she can type, letter by letter, by moving her head to press a button as a cursor cruises through the alphabet, she keeps a diary up until just days before her death.  The diary, a remarkable record of her physical and emotional fluctuations, includes stories she laboriously writes for her daughters that gently mirror the confusions they encounter coming to see a profoundly disabled mother who can no longer hold them or speak to them.  The story culminates in Emily's plea for someone to turn off the ventilator that is keeping her alive, and the efforts her husband makes with the help of a meticulous and sympathetic lawyer and a courageous doctor to arrange for a voluntary death.  

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Summary:

Jerome Lowenstein is a nephrologist, author, and founder of the Bellevue Literary Press and the Humanistic Aspects of Medicine Education seminar program at the NYU School of Medicine.  In this thoughtful and illuminating book of essays he explores the patient/physician relationship in a world where medicine has embraced technology and scientific advances in the laboratory at the risk of neglecting the humanistic underpinnings of the field.

Dr. Lowenstein graduated from medical school at NYU in the late 1950s and spent nearly his entire professional career at NYU Medical Center and Bellevue Hospital. When he was a resident, long before work hour limits were instituted, the house staff gathered in the cafeteria at midnight to dine on the days’ leftovers.  This communal meal “provided a fine opportunity to communicate with colleagues directly, rather than by beeper and phone, about many of the days ‘medical leftovers,’ ” (1) sharing information as well as the frustrations and rewards of caring for patients.  “The Midnight Meal” poses the challenge of retaining the core of relationships, both between patient and physician and among colleagues in the rapidly changing world of medicine today.

In the essay, “Can You Teach Compassion,” Dr. Lowenstein tells his readers about the student who responded to the question with “I don’t know if you can teach compassion, but you surely can teach the opposite.” (13) The student was referring to how students become “desensitized” during their clinical years to the suffering of their patients, sometimes to the point of using derogatory terms to describe them. Dr. Lowenstein argues that teaching attendings can and should encourage students to learn about their patients. He writes how he once interrupted an intern who began to present a case by stating: “This is the first hospital admission of this thirty-five year old IVDA.”  Dr. Lowenstein asks: “Would our thinking or care be different if you began your history by telling us that this is a thirty-five-year-old Marine veteran who has been addicted to drugs since he served with valor, in Vietnam?” (17) Learning about the lives of their patients, Lowenstein emphasizes, does not detract from the clinical picture, but rather enhances it.  

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The Dark Light

Newth, Mette

Last Updated: Aug-30-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Tora lived happily on a mountain farm in Norway until her beloved mother's death  and her own subsequent diagnosis with leprosy, an illness common in early 19th-century Norway and one that drove her mother to suicide.  Upon diagnosis (at the age of 13) she is taken to the leprosarium in Bergen, from which very few emerge.  Most are left there by families whose fear of the disease leads them to abandon even much-loved children, parents, and spouses.  There, despite the misery of living among many who consider themselves the living dead, she finds a friend in Marthe, the chief cook and general caregiver, a woman of almost boundless kindness; and the "Benefactor," a pastor who is remarkably unafraid of the disease from which most flee, and who befriends Tora as she grows into an unpromising early adulthood.  Another unlikely friend is a noblewoman who has languished, embittered, behind a closed door with a trunk full of her old gowns and several cherished books, including the Bible, The Divine ComedyGulliver's Travels, and a popular Norwegian epic about the adventures of Niels Klim at the center of the earth.  She gradually softens toward Tora, who cares for her tenderly as the older woman teaches her to read.  Reading becomes not only Tora's consolation, but that of many of her fellow inmates.  Near the end of her own short, but surprisingly rich life, Tora's father shows up after years of neglect.  Forgiving him, almost against her will, she reaches a new level of acceptance of her own mysterious fate.  The book includes a short afterword about the actual leprosarium in which the story is situated and about Gerhard Armauer Hansen who in 1873 discovered the bacillus responsible for leprosy, the first bacterium proved to be the cause of a chronic human disease.

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For the Love of Babies

Last Updated: Aug-30-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Collection (Case Studies)

Summary:

In this collection of "clinical tales," to use Oliver Sacks' term, Sue Hall, an experienced neonatologist who spent some years as a social worker before medical school, tells a remarkable range of stories about newborns in the NICU and their parents.  As memoir, the stories record moments in a life full of other people's traumas, disappointments, anxieties, and hard-won triumphs where her job has been to hold steady, find a balance point between professionalism and empathy as young parents go through one of the hardest kinds of loss.  Each story is told with clarity and grace, sketching the characters deftly and offering useful medical information along the way on the assumption that many who read the book will do so because they are facing similar challenges and decisions.  Each story is followed by a two- to three-page "Note" giving more precise medical background and offering further resources for those who have particular interest in the kind of case it was. 

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Mortal Embrace

Dreuilhe, Alain

Last Updated: Aug-27-2012
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Journal

Summary:

Where many writers about illness have raised questions about the widespread and often unexamined appropriation of military metaphors to describe how doctors and patients have "struggled with," "combatted," "fought," or "defeated" illness, Dreuilhe embraces it and plays it out to the far reaches of its logic.  Part of the brilliance of this AIDS narrative lies in the way it brings new dimensions of meaning to a metaphor that has become so conventional as to be cliché or so imbedded in the language of illness and treatment, it simply fails to be recognized as metaphor.  Beginning with the "simple skirmishes at the frontier garrisons," Dreuilhe chronicles the progression of his own illness with the sharp eye of a good war reporter who sees through the chaos of the battlefield to the strategies being played out.  "Whenever I take an experimental drug," Dreulhe writes, "and people fight desperately to be among those privileged to risk their livesI feel as though I belong to a unit of shock troops parachuted behind enemy lines: already written off as a casualty, I'm entrusted with the task of spearheading the advance."

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Nemesis

Roth, Philip

Last Updated: Aug-15-2012
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Bucky Cantor is a young, athletic, Jewish javelin thrower who is acting as a coach for young boys in the sweltering New Jersey summer of 1944. He is ineligible for war service because of his weak eyes.

His coaching efforts are much appreciated by the children and their parents because a polio outbreak is on the rise, and sports help take their minds off their fears of death and permanent illness. One by one, boys fall ill and disappear. Some die. But the games continue in Bucky’s own private campaign against the epidemic.

No one really knows how polio is contracted and spread.

Bucky falls in love with Marcia Steinberg who urges him to leave the city to avoid exposure to the germs. She works at a summer camp in the Poconos far from the city and uses her influence to have him invited to fill a sudden vacancy when the sports instructor is called up to military service. After agonizing over his decision, Bucky accepts the position—admitting that he is running away from fear as much as he is going to Marcia.  He is amazed that no one seems to blame him.

The camp life is idyllic, and he is reconciled to his choice.  But soon one of the boys at camp shows signs of the dreaded illness, and Bucky believes that he must have brought it with him. Then, Bucky himself falls ill and develops a permanent disability that ends his athletic career.

Marcia rushes to his bedside more than willing to continue as his lover and wife, but he sends her away believing that she should not be saddled with a disabled lover. He thinks he did the right thing.

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Illness as Narrative

Jurecic, Ann

Last Updated: Jul-03-2012
Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

In Illness as Narrative, Ann Jurecic thoughtfully examines the unruly questions that personal accounts of illness pose to literary studies: What is the role of criticism in responding to literature about suffering?  Does the shared vulnerability of living in a body, which stories of illness intimately expose, justify empathic readings?   What is the place of skepticism in responding to stories of suffering?  Does whether or how we read illness narratives matter?  Jurecic's questions entice discussion at an interesting cultural moment.  The numbers of memoirs and essays about illnessand their inclusion in medical school and other humanities coursesmultiplied from the later decades of the 20th century to the present.   However, their increase, and their potential to encourage empathic readings, coincided with dominant literary theories that advocated vigorously skeptical, error-seeking responses to texts and their authors.  Jurecic reminds us that Paul Ricoeur called such responses "the hermeneutics of suspicion" (3). 

Jurecic's astutely researched, nuanced answers to those questions propose a corrective to the extreme skepticism of "disembodied criticism." Such criticism, she claims, dismisses testimonial writing from "a position of distance and privilege."  But her answers also affirm that intellectually "rigorous" responses to texts are central to the critical humanities (15).  To further her position, she offers attentive readings of accounts of illness by Virginia Woolf, Reynolds Price, and Jean-Dominique Bauby, as well as the theoretical writing of literary and other scholars.  For instance, Jurecic speculates that the condition of a reader's body aligns with his or her responses to texts.  In a chapter called "Theory's Aging Body," she observes that as skeptical scholarly readers ageStephen Greenblatt, Michel Foucault, Judith Butlerthey have turned their attention to "illness, vulnerability, and mortality" (93).  Jurecic also suggests that a function of criticism is to uncover the cultural conditions that memoirs and essays about illness respond to.  Living "at risk" is a recent one.  In stories of living with the risk of experiencing a particular illness in the future, potential patients create narratives of uncertainty to discover the "personal meaning of the impersonal statistics" that medical research now regularly delivers (18). 

 Jurecic also reflects on the ways theorists have understood the possibilities of representing and responding to pain in the varied approaches of philosophers Elaine Scarry, Martha Nussbaum, and Richard Rorty and of anthropologists Jean E. Jackson, Byron Good, and Veena Das.  In an exceptionally comprehensive and nuanced reading of Susan Sontag's theoretical, fictional, and journal writing about suffering, Jurecic uncovers Sontag's inconsistent, yet revelatory positions on the human capacity for responding to representations of pain.  The chapter on Sontag is enriched by Jurecic's reading of Annie Lebovitz's and David Reiff's responses to Sontag's suffering: in Lebovitz's controversial photographs of Sontag's final days (included in A Photographer's Life: 1990-2005) and Reiff's memoir about his mother's illnesses (Swimming in a Sea of Death). 

Illness as Narrative closes with examples of what Jurecic calls reparative writing and reading practices.  In the first instance, ill writers such as Jean-Dominique Bauby (The Diving Bell and the Butterfly) both recreate "a more coherent sense of themselves" and dislodge "fixed ideas and narratives" about illness (109).  In the second instance, Jurecic outlines the limits of two competing readings of Anne Fadiman's The Spirit Catches You and You Fall Down.  One assumes that readers will by nature empathically imagine those who are culturally different from themselves.  The other looks skeptically at the assumption that what medical educators call cultural competence can be acquired by reading a book.  Jurecic suggests that strategies for reading and teaching informed by Janelle S. Taylor, Eve Kosofsky Sedgwick, and Rita Felski can encourage more complex habits of response, such as Taylor's "'empathic curiosity'" (quoted 122).

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The Waiting Room

Tooker, George

Last Updated: May-23-2012
Annotated by:
Aull, Felice

Primary Category: Visual Arts / Painting/Drawing

Genre: Egg tempera on wood

Summary:

On the viewer's right, in receding repetition, are narrow, numbered, blue wooden, open stalls.  Inside the stalls, and only partially visible, people are standing, dressed in street clothes, either alone or in couples, their coats still on.  In the most forward stall there are no people--only two coats that hang from coat hooks, their owners no longer "waiting."  The stalls are open at bottom and top and are illuminated by repeating fluorescent ceiling tubes.  In the lower right foreground sits a bald man dressed in a blue jacket and brown pants who looks down the narrow corridor from which the stalls branch off.  In the lower left foreground is a bench on which two men are dozing -- one man leans forward with his head tilted down, his face obscured by the hat he is wearing.  The other man has his eyes closed, his head tilted backwards.  Both are still wearing their coats.

Standing in front of the dozing men, all the way to the viewer's left, is a looming figure -- a man who stares out at the viewer, his thick glasses hiding his eyes, his mouth turned down in a suspicious frown.  He wears a dark blue coat and a brown hat.  Scraps of paper and possibly cigarette butts litter the floor in front of the sitting men. Blue is a prominent color in this painting but some of the figures wear bright red sweaters, shoes, or a dress, and a red scarf hangs from one of the hanging coats.  These individual touches of color seem to represent attempts by the sequestered people to preserve both their individuality and vitality.

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Corporate Decision

Tooker, George

Last Updated: Apr-26-2012
Annotated by:
Kohn, Martin

Summary:

The foreground of this painting is dominated by a "pieta" type grouping. One woman hovers closely over what appears to be a dying man, while another comforts a small child. This part of the canvas is underlighted. The colors are rich earth tones. The figures are non-Caucasian.

In the background, in harsh light, is a group of identical looking starkly white men. In fact, their faces are almost skeletal. All are in suits, three are seated, with four others standing behind the seated figures. They look very much like a "tribunal."

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