Showing 161 - 170 of 843 annotations tagged with the keyword "Patient Experience"

Summary:

This film documents the quiet devastation of Alzheimer's disease from a daughter's perspective. Using home movie clips and up-close footage of conversations with her 84 year old mother (Doris Hoffmann), a skilled film maker/daughter (Deborah Hoffmann) provides a sustained and poignant documentary of Alzheimer's devastating ability to transform a vibrant and intelligent woman's life.

Interspersed with conversations that reveal her mother's disoriented recollections of the past and the glitches and confusion of daily life routines, home movies and other artifacts provide a contrasting impression of this woman's family and life then and now. Captions and clever title cards are used to organize events and to add gentle humor.

Frances Reid, the camera woman, is mentioned from time to time as someone known to both Deborah and Doris; eventually and without special emphasis, we learn that Frances and Deborah have a lesbian relationship and how Doris adjusted to the couple over the years.

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Annotated by:
Nixon, Lois LaCivita

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Rob Morrow of "Northern Exposure" fame portrays Lyle Maze, a very sweet artist/sculptor with Tourette's syndrome. Even though early scenes demonstrate the challenges presented by involuntary shoulder shrugs, arm twitches, popping sounds, and vocalizations associated with Tourette's, the story quickly evolves into a fairly predictable tale of love. Mike (Craig Sheffer) is engaged to Callie (Laura Linney), but spends months of time incommunicado--practicing medicine in Burundi and other remote locations.

For different reasons, both Lyle and Callie are cast into lives defined by isolation and loneliness. Shortly after Mike has left for his most recent assignment, Callie learns that she is pregnant. Alone and confused by Mike's long absences, she turns increasingly to Lyle for friendship and support. Not surprisingly, they fall in love.

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Annotated by:
Nixon, Lois LaCivita

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The story is based on an actual 1950's trip by two university friends, Ernesto 'Che' Guevara (Gael Garcia Bernal) and Alberto Granado (Rodrigo De la Serna). Guevara is studying medicine, Granado biochemistry. They plan to travel from Buenos Aires across the Andes Mountains to Chile, Peru, and, then, to Venezuela. Before too many miles their derelict 1939 motorcycle fails, and the two young men continue by whatever means is available. The journey intent is one of adventure--drinking, meeting women, seeing the world.

The young men do discover South America's impressive natural beauty but more strikingly, their eyes and sensibilities are directed to abject poverty and shocking injustices. These blatant inequities, as well as an extended period of time in a leper colony, contribute to the reframing of their original happy-go-lucky adventure and explain, in part, the impulses that eventually would shape Guevara's role in the Cuban Revolution.

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Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Fiction

Genre: Novella

Summary:

Oscar, the narrator of this fresh fictional gem, is ten years old. Because his form of leukemia has not responded to treatment, he has been living in a French hospital for a very long time. His parents, who bring him gifts and surely love him, are uncomfortable during their infrequent visits. Dr. Dusseldorf and the nurses are kind, but indirect and distant in their communications with him. Because no one talks to him about his illness or what is likely to happen, he feels isolated, alone, and miserable.

When Mamie-Rose, a very elderly hospital "pink lady" (hospital volunteer) with an exotic past, enters Oscar's life, she brings honesty, warmth, and comfort to the lost child known as Bald Egg. Guided by this incredible person--a blunt-spoken, irreverent woman who touches him, kisses him, and tells him wondrous stories of her wrestling feats--the boy grows stronger. Who wouldn't under the influence of the Strangler of Languedoc?

Of course Oscar is going to die. In addition to her generous companionship and her introductions of him to other children in the hospital, Mamie-Rose suggests letters to God as a way of feeling less lonely. "So God, on the occasion of this first letter I've shown you a little of what my life in the hospital is like here, where they now see me as an obstacle to medicine, and I'd like to ask you for clarification on one point: Am I going to get better? Just answer yes or no. It's not very complicated. Yes or no. All you have to do is cross out the wrong answer. More tomorrow, kisses. P.S. I don't have your address: what do I do" (65).

With Mamie-Rose treating him like a real kid, "move your but . . . we're not ambling along like snails" and Oscar scripting very candid letters to God, the first-person story about loneliness, love, and compassion is presented with spirited imagination. Oscar's story is quite extraordinary--and unforgettable.

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Suburban Shaman

Helman, Cecil

Last Updated: Feb-22-2010
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Because this lucid, rich, and incisive book has not, as yet, been published in the United States, it has not acquired the readership it deserves. For those teaching Medical Humanities or those interested in broader or more global stories and perspectives about physician training, practice, and experiences, Helman’s most recent publication should be considered.

Part One (“Setting Out”) begins in South Africa where Helman’s family, comprised of a dozen doctors, has lived for generations and where his own medical studies occurred. As a child, he accompanied his father on rounds while other children spent holidays at the beach. Before long he discovered how hospitals, during the madness of Apartheid, were to “some extent a distorted mirror-image of the world outside” (3). Appalled by the differences in care and treatment, the keenly aware young man kept notes. His vivid observations of the harsh context of social injustices provide an unequivocal, eloquent, and disturbing critique of medicine then and there. His acute observations of physician behaviors and indigent populations in the city and in the bush contribute, as readers discover in later chapters, to the author’s expanded and compelling interests in cultural anthropology.

Part Two (“The Family Doctor”) leads to London. “After all the heat and light and space of Africa, London—with its low leaden sky and constant drizzle—was like living inside a Tupperware box, one stored deep inside a refrigerator” (47). In the 60s Helman’s migration required an adjustment to a world of technology and order, where as a family practitioner, he had become, in fact, a suburban shaman. In any society, patients wanted “relief from discomfort, relief from anxiety, a relationship of compassion and care, some explanation of what has gone wrong, and why, and a sense of order or meaning imposed on the apparent chaos of their personal suffering to help them make sense of it and to cope with it” (xvi).

Gradually Helman saw connections between the role of family physician and traditional healer: both involved an understanding of “not only a body’s internal equilibrium but also the equilibrium of the patient’s relationships with the world he or she lives in and how treatment should aim not only to treat the diseased organ but also to restore the patient’s life that equilibrium of relationships” (xvii). His encounters with patients and the stories they reveal suggest how important these often overlooked connections are and why they ought to be included in medical training and practice.

By the time readers reach Part Three ("States of the Art”), the author has moved into broader realms of thinking, in which medicine and illnesses are examined anthropologically. After 27 years of clinical practice Helman’s white coat and stethoscope are placed on a hook. Now, as a credentialed anthropologist at University College London, his larger lens allows for sustained scrutiny of the complexities, ambiguities, and nuances in such chapters as “Grand Rounds,” “Hospitals,” “Placebos,” “Third Worlds.” Helman’s range of experiences, multi-disciplinary training, intellectual conclusions, and abundant common sense argues for techno-doctors to learn from holistic practitioners. Whether devastating or humorous, the critiques reflect not just care provision but shared human capacities: the insights are thoughtful and fresh and very worthwhile.

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Leaning Together in the Storm

Smith, Larry

Last Updated: Feb-22-2010
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Poetry

Genre: Poem

Summary:

Summary: This very welcome poem concerns "twelve older men in shirt sleeves," a group of men with prostate cancer. The narrator, one of the men in this "private brotherhood" suggests the difficulty and reluctance of many men to recognize out-loud their mutual circumstances: "Ever notice how no one parks / in the Cancer Center zone." This line sets the tone; the men are vulnerable and afraid. From time to time they gather for support from one another and from the meeting's scheduled speaker. The reader has little difficulty imagining the collective angst and the grasping of hope shared by the participants leaning together in their mutual storm.

Any expectation of supportive discourse is shattered by this evening's guest speaker, a careless surgeon, who strides confidently into the room with his tray of slides. The remainder of the poem demonstrates a worst-case scenario:

I interrupt his gay delivery,
"What about orgasm...?"
"Forget orgasm," he grins,
"You don't have a prostate."

Some smile nervously and bravely ask questions that really matter. Each time the physician exhibits his caustic brand of insensitivity. The narrator, surely expressing the feelings of his colleagues, wants only to "drive / this witch doctor from the room."

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Alice in Bed

Sontag, Susan

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Plays

Genre: Play

Summary:

This play in eight scenes presents the fictionalized character of Alice James, sister of Henry and William James, who after a sickly childhood, succumbed at 19 to a variety of vague and recurrent illnesses that made her a lifetime invalid. She died at 43 of breast cancer.

In a series of encounters (with her nurse; her father; her brother, Henry; several Victorian female figures: Margaret Fuller, Emily Dickinson, and mythological figures from Victorian fantasy fiction and from Parsifal; and a burglar), as well as a long dramatic monologue, her various forms of internal conflict are hilariously and poignantly articulated. They converge on the implications of her recurrently deciding whether or not to get out of bed and do something, and her confusion, often discussed by biographers and critics, about her place in her brilliant family, her vocation as a woman, and her own desires.

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Annotated by:
Woodcock, John

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In December 1995, at the age of 43, the author suffered a sudden and severe stroke in the brain stem and emerged from a coma several weeks later to find himself in a rare condition called "locked-in syndrome" (LIS). Although his mind was intact, he had lost virtually all physical control, able to move only his left eyelid. There was no hope of significant recovery. This memoir, composed and dictated the following summer, consists of Bauby's brief and poignant reflections on his condition and excursions into the realms of his memory, imagination, and dreams.

The composition of this book was an extraordinary feat in itself. Unable to write or speak, Bauby composed each passage mentally and then dictated it, letter by letter, to an amanuensis who painstakingly recited a frequency-ordered alphabet until Bauby chose a letter by blinking his left eyelid once to signify "yes." In what was likely another heroic act of will, Bauby survived just long enough to see his memoir published in the spring of 1997.

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Sugar Isn't Everything

Roberts, Willo Davis

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Eleven-year-old Amy has been hiding cookies beneath her bed, drinking gallons of liquid to slake her thirst, getting headaches, feeling irritable, and failing to grow though she's been eating huge meals for months by the time she faints and is taken to the hospital. There she is diagnosed with Type 1 diabetes. Though she feels disoriented and angry, she is immediately put into a training group with other kids around her age who have been recently diagnosed.

She has to learn how to maintain a carefully balanced diet and how to give herself insulin injections. The male nurse who teaches them is himself a diabetic as well as a competent, cheerful young man who takes the edge off the experience. He makes it clear to Amy and the others that the primary responsibility for their health maintenance routines lies with them personally.

After release from the hospital, Amy begins to deal with the social adjustments her disease demands. Her brother and parents are helpful, but uncertain about how much to change their own eating habits to accommodate her. Her younger sister finds the accommodations trying and unfair. Amy's friends also have learning to do.

It helps her that she knows a few other diabetic kids, including Coby, a boy who has struggled with his own resentment and the consequences of sloppy monitoring of his condition, but has learned how to control his diet for the sake of staying on the baseball team where he's a star player. Their friendship helps Amy transition into "normal" life hopefully.

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Annotated by:
McEntyre, Marilyn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Richard (Kenneth Branagh) is assigned alternative service as a consequence of a misdemeanor. A social worker connects him with the mother of a young woman, Jane (Helena Bonham Carter), who is suffering from Lou Gehrig’s disease. Feeling reluctant and unequipped for such responsibility, he starts taking her on tame outings suggested by her mother. Initially she is hostile and resistant; gradually he gives way to her insistence on unpermitted activities: he takes her on a carnival ride, drives her around in his jeep, makes her dinner at his shabby rural cottage, about all of which the mother remains clueless.

Jane acknowledges that he is the only one who treats her like an adult. In a rare moment of vulnerability, she asks him to help her lose her virginity, not necessarily to "do the awful deed" himself, but to help her hire or find someone who will give her an experience of sex before she gets to the point where it’s impossible. He refuses, she won’t see him, and for a time her mother tries to find another caregiver--a hopeless failure--a woman who talks down to her.

Richard attempts other community service and runs into comic difficulties attempting to help old women, clean toilets, and finally retreats to his outpost where he is building a plane out of scrap metal and junk in a barn. He’s insolvent, but determined to carry through his project, if only, like the Wright brothers, to keep it aloft for 12 seconds. His landlord announces that he’s selling the place and Richard and his airplane will have to clear out within a month. This impels him to try his biplane.

In the meantime, Jane searches internet dating agencies, advertising herself as a "hideously crippled woman" seeking sex, but gives it up. Missing her, Richard finally comes to her home and consents to take her to "get shagged" if she won’t blame him for any of the consequences. They go to London and seek agencies for the disabled that are willing to help her experience sex. The only positive response she encounters is at a nightclub specially for the disabled. She’s horrified.

They go upscale, to a hotel where "gigolos" might be available. Richard hilariously serves as her go-between. He finds one who, alas, charges 2000 pounds. Finally she says, "Okay, then, you’ll have to do it, Richard." This brings him to acknowledge that he’s "a cripple," meaning that he’s been impotent for some time. Instead of offering her himself, he offers to rob a bank. He doesn’t, however, go through with the robbery, but returns to take Jane home with him where she remains as she’s dying.

Ultimately, Jane and Richard both discover that love and friendship are what matter. He takes her up for the one flight his plane is capable of: a few glorious minutes over the sheepfields. The experience caps her life and seems to promise a beginning of his. She tells him, "You have a future, Richard. Either take it or switch bodies with me." She leaves him a final message on the voice machine which is the only way she can communicate, encouraging him to claim his life, and reflecting, "The only life you can have is the one that is available to you."

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