Showing 1 - 10 of 885 annotations tagged with the keyword "Patient Experience"

Annotated by:
Kohn, Martin

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

The Talking Cure is Jack Coulehan’s 11th book, seven of which, including this collection, are books of his poetry. This collection begins with selected works from his six previous books of poetry and continues with a selection of poems in the imagined voice of Chekhov. These sections are followed by previously uncollected poems, and the book ends with 25 new poems reflecting the title of this book--“The Talking Cure”. The poems represent multiple viewpoints—patients, caregivers, family members as they struggle to make sense of the vicissitudes—and unexpected joys—in life. The poems have appeared over the past four decades in medical journals (primarily Annals of Internal Medicine and Journal of the American Medical Association) and in many literary journals including Prairie Schooner and Negative Capability Press. 

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Annotated by:
DiLeonardo, Olivia

Primary Category: Literature / Nonfiction — Secondary Category: Literature /

Genre: Graphic Memoir

Summary:

Dr. Weaver-Hightower wrote, illustrated, and published this powerful graphic work in the Journal of Medical Humanities.  The comic itself is presented in a traditional paneled format, with a few exceptions, and rendered in a moody ink wash in black, white, and various shades of darker and lighter greys. The story is told in the authentic, sometimes faltering voice, of the father of Thomas and Ella, a pair of twin infants who died at 22 and 24 weeks into pregnancy. Beginning with their harrowing trip to the hospital, the comic describes the father and mother’s loss of Ella, shortly after she was born prematurely; their subsequent wait for Thomas to reach the “viable” age of 24 weeks; his stillbirth; and the couple’s sudden discharge from the hospital, going home with “empty arms”.  The story then transitions into “The Long After”, including the funeral and the phases of the parents’ grieving process.  The father describes his grief, frustrations, the couple’s differing ways of coping, and his ambivalence and anger toward religion as a source of comfort or deeper understanding.  On the last page, he recounts their hopes and fears as they enter into their second pregnancy, concluding with panels of the father wrestling with how to understand and process this loss.  The final panel is an image of the father in profile, expressionless, saying nothing, a fitting conclusion to a story for which words seem to fail. 

With this piece, the author introduces us to the genre of the “research comic”. The comic is followed by a methodological appendix, which explains the author’s process for choosing, capturing, and relating this history in words and illustrations, as well as his rationale for selecting a comic or graphic memoir format for the piece.  The author also elaborates upon the concept of the comic as a form of “rigorous, informative research” (226).  The appendix is very interesting and will satisfy the curiosity of readers asking the questions, “How did he do this?”, or “Why is this story a comic?”, but the piece stands on its own without the appendix, as well.  

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Summary:

Doctor’s Choice is a collection of 16 stories by authors from and well known in the early-to-mid 20th century. I offer four summaries of the stories that I am considering using in teaching.

“Rab and His Friends” by John Brown, MD, was originally published in 1859 and is sometimes referred to as young adult literature. It was one of Brown’s most successful works. The story is told in the voice of a medical student, “John”, and begins with his reminiscence of six years earlier when he first met the old “huge mastiff” Rab, and his “master”, a carrier named James Noble. John, who had befriended Rab during medical school, next sees him ‘one fine October day’ as he was leaving the hospital. Rab was with James who was bringing his wife, Ailie, to see a doctor because “she’s got a trouble in her breest…” (p.37). Examination showed no doubt that the tumor needed to be removed. Having survived the breast amputation (without anesthesia and observed by the narrator and his fellow students), four days later Ailie’s delirium set in. With James by her side, and with tender caring, Ailie died a few days later. Soon after James took to bed “and soon died…The grave was not difficult to reopen. A fresh fall of snow had again made things white and smooth; Rab once more looked on, and slunk home to the stable” (p.46). The next week John sought out the new carrier who took over James’s business to ask about Rab. The new carrier tried to brush him off—but admitted he killed the dog, explaining that the dog was inconsolable and that he had to “brain him wi’ a rack-pin….I could do naething else”(p.46). John thought it a fitting end… “His teeth and his friends gone, why should he keep the peace and be civil?”

“Miracle of the Fifteen Murderers” by Ben Hecht, was originally published in Collier’s Magazine in 1943. The narrator of this story passes along a tale he heard from an elderly friend, a physician who was one of 15 eminent physicians that formed a secret group meeting quarterly to discuss the ‘medical murders’ they had committed. The group had been meeting for the past 20 years, but had disbanded due to the outbreak of WWII—“The world, engaged in re-examining its manners and soul, had closed the door on minor adventure” (p.139). The last meeting of the group is the subject of the tale and it describes how the newest member, a young surgeon, tricked the group into providing the diagnosis for a patient this doctor, Samuel Warner, was struggling to care for. Warner explained that his patient—who he had befriended--, a young Negro boy of “seventeen, was an amazingly talented [poet whose work] “was a cry against injustice. Every kind of injustice. Bitter and burning,” (p.149). After working hard for 2 weeks to save his life, and realizing that his diagnosis of ulcerative colitis was wrong, Warner’s scheme (a feigned medical murder) got the eminent physicians to the diagnosis: a fishbone had caused the perforation that was threatening the poet’s life. Grabbing his hat and coat—and after thanking the doctors for the diagnosis- Warner is off to save his patient’s life. A half-hour later, rising to the call as well, the other 14 doctors joined Warner in the operating room to view the life-saving procedure, allowing one of the eminent physicians to remark with a soft cackle, that “the removal of this small object….will enable the patient to continue writing poetry denouncing the greeds and horrors of our world” (p. 154). 

There was no original publication date for “The White Cottage” by L.A.G. Strong, but it has been anthologized since at least 1940. The narrator tells of a visit by a locum town-based doctor to an island nearby to help a woman give birth at her home. The perilous journey from the town to the island with the expectant father and a neighbor as navigators and rowers ends with all thoroughly drenched from a storm after nearly capsizing. Realizing that the doctor has no dry clothes to change into, the couple offers him the husband’s flannel nightgown and a blanket. The doctor, after checking the wife and estimating a number of hours of labor ahead, goes to the living room by the fire. Fearing he’s still chilled, the couple decides to make room in their bed for him. After hesitating for a moment, he climbs in next to the husband. After some small talk and an ‘order’ for the soon-to-be mother to lay on her side and have her husband rub her back, the doctor begins to assess the situation he finds himself in: “Right living was not obedience to rule: it was a balance, renewed each instant, like a tight-rope walker’s, a tension between opposites. Here, for a moment, in this bed, in this cottage, in this tiny focus of life, beneath storm and towering sky, was wisdom. Men did not possess wisdom. It possessed them. Like a light, it flickered here and there over the vast dark mass of humanity, illuminating briefly every now and then a single understanding. Here, for the moment, it possessed him; and by its light he gave thanks, and loved all men” (p. 249). After a successful delivery (and some celebratory drink and breakfast), the doctor was off to his town with a promise to return for a checkup. His new friend demurred. “No trouble man. It’s a pleasure—besides being my plain duty. Mind you, she’ll be right as rain. But I’ll come” (p.252), responded the doctor. After a silent handshake, and suddenly finding “eyes full of tears … he clambered into the boat” (p. 252).

“Doc Mellhorn and the Pearly Gates” by Stephen Vincent Benet was originally published in 1929. The story begins with an in-depth description of a humble, impish (having mastered many diversionary tricks), and independent small town doctor and the place he practices, but quickly moves to much larger realms through Benet’s use of magical realism. Doc Mellhorn has died but has not fully landed in his final destination, heaven, and decides to spend a bit of time in hell first because of the perceived lack of opportunity to practice medicine in heaven (and an off-putting encounter with an overly officious clerk at the pearly gates). When he gets to hell, he gets to work on setting up a clinic—“mostly sprains, fractures, bruises and dislocations, of course, with occasional burns and scalds… [reminding him] a good deal of his practice in Steeltown, especially when it came to foreign bodies in the eye” (p.23). After a number of months, and a confrontation with another officious bureaucrat, Doc got back on the road to his original destination, giving him some time to think about whether he was deserving of that final abode. “I’m a doctor. I can’t work miracles,” he thought. “Then the black fit came over him and he remembered all the times he’d been wrong and the people he couldn’t do anything for” (p.28).  Landing for a second time at the pearly gates, he finds family waiting for him with assurances that there’s more than just eternal peace in heaven. “They wouldn’t all arrive in first-class shape," (p.31) explains his Uncle Frank, assuring him that there will be lots of work for him to do. Uncle Frank also lets him know that a delegation is coming to meet him since Doc had “broken pretty near every regulation except fire laws, and refused the Gate first crack” (p. 32). Then, out of a phalanx of famous doctors (from a list that Doc began to create during his first, shortened visit), appeared—with “winged staff entwined with two fangless serpents”-- his top choice--- Aesculapius. “The bearded figure stopped in front of Doc Mellhorn. Welcome brother, said Aesculapius. It’s an honor to meet you, Doctor, said Doc Mellhorn. He shook the outstretched hand. Then he took a silver half dollar from the mouth of the left-hand snake” (p.32). ….I laughed out loud—and couldn’t imagine a better ending.




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Annotated by:
Donley, Carol

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

 Cortney Davis has divided this collection of her poetry into seven major sections which she calls “Voices.” The first and last sections are “Voices of Healing” which frame and wrap around the others: “Home,” “Desire,” “Suffering,” “Faith,” and “Letting Go and Holding On.” The sections include previously published poems as well as new ones.  Davis is known for her ability to see and understand what is going on and to express that in ways that help the reader “get it.”  This collection also shows her ability to hear the unique voices that express suffering, faith, desire—and to convey empathic understanding of the speaker.  Sometimes she gets angry with the speaker. The poems range through time, from her childhood, nursing training, nursing experiences, deaths of her parents, to more current experiences with grandchildren.  Throughout there is a consistent caring and compassion, mixed with many other feelings, many of them contradictory.

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Annotated by:
Grogan, Katie

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In her memoir Ask Me About My Uterus, science writer Abby Norman tells two intertwined stories: one about her fraught relationship with her own chronically ill body, and another about the fraught relationship between women and medicine. Norman is a sophomore at her dream college when a sudden, unrelenting abdominal pain sends her to the emergency room—and into a revolving door of medical appointments for years to come. Thus begins her diagnostic odyssey, protracted by an infuriating obstacle: not only must she endure excruciating pain, she must convince doctors that it’s real.

Norman is eventually diagnosed with endometriosis but has several frustrating clinical encounters along the way. Her symptoms are repeatedly minimized or disbelieved by doctors of various identities and specialties. One actually says the words that have long been inferred to Norman and so many women before her: “This is all in your head.” Finally receiving an accurate diagnosis provides some measure of clarity about Norman’s pain but little in the way of relief. She learns firsthand that medical knowledge about endometriosis is desperately lacking—a troubling realization given its prevalence. A commonly cited statistic suggests one in ten women have endometriosis but, as Norman notes, most studies have excluded marginalized communities, so the incidence is likely higher. Norman ultimately becomes an expert on the condition, setting her on a path to advocate for herself and others with endometriosis—and to write about it.  

The memoir is organized chronologically, beginning with the onset of Norman’s symptoms about seven years prior to the book’s publication, with occasional flashbacks that draw connections between her current crisis and her difficult childhood. She opens several chapters with descriptions of famous case studies and experiments, situating her own experience within a long and disturbing lineage of women dismissed, misdiagnosed, and mistreated by medical professionals.  

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Pain Studies

Olstein, Lisa

Last Updated: Jun-10-2020

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

“All pain is simple” reads the opening sentence of this unusual and striking book. The next sentence reads, “And all pain is complex.” These two sentences foreshadow many puzzles to come: how do we live between chaos and control? Why can’t doctors figure migraines out? Why don’t they agree on a treatment for a particular patient? Olstein is a poet and long-term migraine sufferer. Her book offers many observations about pain, and her attempts to define it, describe it, and plumb its nature through language. There is no linear narrative or argument, rather 38 very brief chapters—usually three to five pages—and many of these could be read in a different order. 

Olstein uses the terms “studies” and “research” for her efforts to capture pain, to explain it, and to understand the cause(s) of her disease. Her mother had migraines; women have three times the rate of men; she had a childhood head injury. Do any of these factors explain her disease? No. And what treatments work? She lists some 50 drugs/supplements/activities she has tried to deal with her illness. None of these have worked in a definitive way. Further, she lists some 30 side-effects she has experienced from these various treatments (pp. 74-75). She has had multiple migraines, one lasting three months, but she also says drugs keep pain at bay: “mostly the medication does work” (p 90).

Some disparate figures help her focus her inquiry: Joan of Arc (possibly a migraine sufferer), the TV character Dr. Gregory House (racked with chronic pain, he is an opioid addict), Virginia Woolf, and Hildegard of Bingen (possibly a migraine sufferer). Also ancient writers such as Lucretius, Pliny the Elder, and Antiphon the Sophist, and contemporaries from different fields, such as mathematics and neurology. Also she refers to poems by Emily Dickinson, Elizabeth Bishop, and C. D. Wright, as well as to an article on gendered literature by Siri Hustvedt. 

Largely written during a writing residency, these are incisive notes plus associations as she plumbs not only her illness but also her responses—as poet, as thinker, as searcher for healing—to the bizarre, long, difficult path of her migraines. (We have only brief mentions of her personal and family life.) While she refers to some scientific literature, it is more often that her insights come from artistic fields such a literature, sculpture, drama, and popular music. She writes that her work with a therapist over a dozen years has been helpful to her.

There is no conclusion…nor can there be. Her illness, treatment, and writing are all works in progress. Patients are different; doctors are different; science evolves. In their many forms and presentations, migraines are mysterious and complex, as this book creatively and powerfully shows. Olstein writes, “The beauty, the love, is in what we perceive” (p. 144). We may take this observation as the guiding principle for the book.   

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Summary:

Maybe You Should Talk to Someone:  A Therapist, Her Therapist, and Our Lives Revealed is a memoir that takes the reader behind the closed doors of therapists’ offices and into the relationships that are formed between therapists and their patients.  The author and psychotherapist Lori Gottlieb, most familiar to readers as the writer of The Atlantic’s “Dear Therapist” column, explores the science, the role, and the goals of psychotherapy through her first-person narration.  The memoir is written chronologically with occasional flashbacks and is broken up into four parts, each progressively exposing more about Gottlieb’s and her patients’ experiences.

Though written by a therapist, the book approaches the therapeutic relationship from all angles.  Just as we see Gottlieb in her role as a therapist in Los Angeles, we also see her on the other side of the couch as a patient.  Coming to therapy in the midst of a breakup, she details her own struggles and relationships.  Interspersed between her sessions with Wendell, a therapist she deftly describes as one from “Therapist Central Casting,” and her own appointments with patients is Gottlieb’s long journey to becoming a therapist (including brief stops in Hollywood and in medical school) and how she came to understand the power of interpersonal relationships. 

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A dramatic prologue depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is ill with Alzheimer’s disease and does not, for that moment, recognize him. The following chapters provide a long flashback, beginning with Arthur’s family background, his youth as a tough street kid in Brooklyn, his medical education, and his marriage to Joan. We learn of their work in China, travels, and professional success. Arthur gradually realizes that the US health care system has become “a rapidly fragmenting and increasingly chaotic and dysfunctional non-system” (p. 126). Further, he sees a reductive focus on patients as mere biological entities, ignoring their personal, familial, and cultural natures. As a result, “Caregiving in medicine has gone from bad to worse.”

Joan suffers from an atypical kind of Alzheimer’s that increased over “that dismal ten years” (p. 156) with Arthur providing care to her, at cost to himself. There is no home health aide, no team approach with doctors, indeed no wider interest in her care other than the state of her diseased brain. Kleinman vividly describes the toll on her and on him.

Kleinman is aware of the privilege he has as a Harvard doctor, well known for his psychiatric work, his teaching and writing, and his wealth—in contrast to other patients and families. Some patients go bankrupt from medical bills.

Visits to nursing homes reveal a wide range of social conditions, contexts, and levels of care; the best have a sense of “moral care” (p. 200). Joan’s final days are hard. Supportive family members agree to her living will and healthcare proxy for morphine pain control only. She dies, apparently “at peace” (p. 232).

In the last pages Kleinman introduces the notion of “soul” as “essential human interactions” (p. 238). He discusses some of the limits of medicine (see paradoxes below) but also praises local efforts to improve humane care, such as team approaches, uses of narrative medicine, and medical/health humanities programs.  

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From Nothing

Krugovoy Silver, Anya

Last Updated: Jan-06-2020
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

There are 48 poems in this volume (the author's third full-length collection), divided into three sections.  The author's first book, “The Ninety-Third Name of God” introduced us to her family and especially to her diagnosis--inflammatory breast cancer--the disease discovered in 2004 during her pregnancy, the disease that claimed her life in August, 2018 when she was forty-nine-years old.

In her second collection, “I Watched You Disappear”  Silver's poems invited us to accompany her on her journey through treatment, anger, despair, determination, and faith. This third collection (her penultimate) continues the author's beautifully written illness narrative, again presenting moments of joy and of despair, and always of hope.

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The Little King

Rushdie, Salman

Last Updated: Dec-19-2019
Annotated by:
Galbo, Sebastian

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

Dr. R. K. Smile, MD, founder of Smile Pharmaceuticals, Inc. (SPI), enjoys a sudden lurch into fortune and celebrity. Dubbed the ‘Little King’ by his Atlanta-based Indian community, Dr. Smile is a towering medical authority, philanderer and philanthropist, known to be both generous and avaricious. His pinnacle pharmaceutical coup, the patent that has earned him billionaire status, is InSmile™, a sublingual fentanyl spray designed for terminally ill cancer patients. Dr. Smile’s entrepreneurial vim, however, hardly stems from benevolent medical research, but rather an ‘excellent business model’ that he observed on a visit to India during which a Bombay ‘urchin’ handed him a business card that read, ‘Are you alcoholic? We can help. Call this number for liquor home delivery.’ The blunt practicality of building a market around sating addiction strikes the doctor as entirely sensible. Often wistful about India’s ‘old days,’ Dr. Smile fondly recounts the insouciance of neighborhood dispensary hawkers, their willingness to ‘hand out drugs without a doctor’s chit.’ Though admitting that ‘it was bad for [their] customers’ health but good for the health of the business,’ Dr. Smile yearns to replicate a similar culture of delinquent pharmacology, an unregulated market capable of profiting from supply-and-demand forces but indifferent to the wellbeing of its patrons. 

In the meantime, Dr. Smile’s wife, Mrs. Happy Smile, a simpering and daft socialite, envisions grand branding prospects that will globalize the Smile name through ostentatious publicity—inscribed name placards at the ‘Opera, art gallery, university, hospital […] your name will be so, so big.’ She refers to the worldwide reputation of the OxyContin family, the proliferation of the family’s name and esteemed place among prestigious cultural institutions: ‘So, so many wings they have,’ she says, ‘Metropolitan Museum wing named after them, Louvre wing also, London Royal Academy wing also. A bird with so, so many wings can fly so, so high.’ 

InSmile™ sales drive Dr. Smile’s burgeoning drug trade, as his prescription becomes preferred to conventional OxyContin highs due to its ‘instant gratification’ in the form of an oral spray. While SPI fulfills special house-calls for American celebrities and customers in ‘gated communities from Minneapolis to Beverly Hills,’ it also ships millions of opioid products to places such as Kermit and Mount Gay, West Virginia—communities, outside fictional contexts, that bear real-world vestiges of the opioid epidemic (West Virginia has the highest rate of drug overdose in the United States). Through a lecture series scheme, Dr. Smile bribes respected doctors to publicize and prescribe the medication, further entrenching the dangerous drug in medical circles.

As the SPI empire collapses following a SWAT-led arrest of his wife, Dr. Smile muses indignantly on his reputation and the ingratitude of his clients. Tugged again by nostalgia for the old country, he justifies his drug trafficking by likening it to quotidian misdemeanors, instances when one could circumvent the inconveniences of India’s law by knowing how to pull the venal strings of corrupt systems—like cutting a long ticket queue at the rail station, he says, by paying a little extra at a backyard office; or bribing government officers to stamp customs papers required to ship restricted antiques abroad—‘We know what is the oil that greases the wheels.’ With this deleterious mindset, combining nostalgia and entrepreneurial greed, Dr. Smile’s future is uncertain, but he is resolved to return—after all, he says, ‘I have lawyers.’

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