Showing 141 - 150 of 879 annotations tagged with the keyword "Patient Experience"
Elie Wiesel, 82-years-old, has pain that he thinks is in his stomach or esophagus, perhaps caused by his chronic acid reflux. After tests, however, doctors diagnose cardiac illness and insist on immediate surgery. Reluctant to go to the hospital, Wiesel dawdles in his office. When he does go, doctors believe a stent will do the job. Instead, the intervention becomes a quintuple bypass.
This brief memoir—a scant 8,000 words—presents the “open heart” of a gifted writer as he contemplates his open-heart surgery, his past life, and the future. He asks himself basic, even primal questions about life, death, and the nature of God.
Although a man with an extraordinary career—prizes, fame, honorary doctorates, friends in high places, professorships—Wiesel experiences and describes ordinary feelings of anxiety, pain, and doubts about his cardiac emergency and possible death. His stylistic gifts describe frankly and vividly a patient’s fears. As many have observed, patients with a serious disease have two difficulties, the disease itself and their emotional responses to that disease. As Wiesel is wheeled into the OR, he looks back on his wife and son; he wonders whether he will ever see them again.
He writes that his “thoughts jump wildly; I am disoriented.” He recalls a friend undergoing similar surgery; she died on the table. He says he can’t follow the jargon of physicians. The texture of the prose is rhapsodic, jumping from the present to memories, many of them about war, his past surgeries, or important family events. This short book has 26 “chapters,” some just half a page; they are like journal entries.
As he slowly recovers, he feels pain and has visions of hell, including the concept of ultimate judgment. “Evidently, I have prayed poorly…; otherwise why would the Lord, by definition just and merciful, punish me in this way?” (p. 38). Because he has a “condemned body,” he feels he must search his soul. In the longest chapter of the book, he reviews several of his writings.
Wiesel asks some of the questions from his famous novel Night (La nuit, 1958). If there is a God, why is there evil? Auschwitz, he says, is both a human tragedy and “a theological scandal” (p. 67). Nonetheless, he affirms, “Since God is, He is to be found in the questions as well as in the answers” (p. 69).At the end, he still has some pain but feels much gratitude for his continuing active life and for his grandchildren.
Claude Monet (1840--1926) was a French impressionist painter. As he aged, he developed cataracts, but refused to have them surgically removed. In this 46-line free verse poem, Monet, the speaker, tries to make the doctor understand his reasons for refusing the operation.
What the doctor sees as deterioration, an "aberration" and an "affliction," is for the artist the result of a long process of development, a kind of culmination of his life’s work: exploring the way that people (rather than eyes) see. For Monet, removing the cataracts would "restore / my youthful errors" of vision, a world seen according to "fixed notions" of discrete objects rather than as the flux of pure light it has become. Monet wishes the doctor could see what he does: "if only you could see / how heaven pulls earth into its arms . . . ."
Summary:"Propofol" is a 20 line poem of five quatrains each with an a-b-a-b rhyming scheme. Appearing in the June 30, 2008 New Yorker magazine, it is a description of the Classical allusions and hallucinatory experience surrounding the administration of the hypnosedative, propofol, to the speaker-patient for an undescribed medical procedure.
Summary:This book describes San Francisco’s Laguna Honda Hospital, where Victoria Sweet worked as a doctor for 20 years. In the tradition of the Hôtel-Dieu in Paris (literally “God’s Hotel”), Laguna Honda cares for the sickest and poorest patients, many staying there indefinitely because there is no alternative for them. Sweet learns from her long experience at Laguna Honda that “Slow Medicine” has benefits, that a holistic or unified view of patients works best, and that the reductionism and specialization of modern medicine has limitations and costs. During these years Sweet becomes fascinated by the medieval abbess Hildegard of Bingen and earns a Ph.D. focusing on medieval medicine. At the same time (and increasingly) various forces—economic, legal, political, bureaucratic—cause many changes at Laguna Honda, mostly contrary to Sweet’s vision of medicine.
Part history, part memoir, part social criticism, the book is informative, entertaining, and important for its discussion of the care of our least-well-off citizens and for its perspectives on modern, Western medicine.
There are three intertwining strands to this engaging book: Sweet’s medical evolution as a physician, the changes in Laguna Honda, and her investigations of Hildegard of Bingen and other spiritual matters.
Sweet joins up with Laguna Honda initially for only two months, but she finds the hospital and her work there so fascinating that she stays for 20 years. As an almshouse, Laguna Honda takes care of indigent patients, most with complicated medical conditions, including mental illness and dependencies on alcohol and/or drugs. Many of these cases come from the County Hospital with continuing (but not carefully reviewed) drug treatments. Every 15 or 20 pages, Sweet describes the dilemmas of a particular patient, and her medical (and personal) attention to that patient. The cases are vivid and instructive.
Clearly Laguna Honda is a major figure on the book; we can even consider it (or “her”) a beloved character and a teacher to the young Dr. Sweet, who learns three principles from her work there: hospitality, community, and charity.
Because Laguna Honda is old-fashioned in many ways, Sweet reads her own X-rays, goes the to lab to see results, and spends large amounts of time with each patient. Laguna Honda has an aviary, a farm with barnyard, and a solarium; such features help to heal the whole person. While respectful of modern medicine, Sweet slowly learns that a careful review of a patient through Slow Medicine is more accurate and more cost-efficient than standard, reductionist, high-tech medicine. She comes to respect approaches from “premodern” medicine, including that of Hippocrates and Hildegard.
The second strand is the evolution of Laguna Honda itself. Sweet describes a variety of pressures: the recommendations of consulting firms, rulings from the Department of Justice, a lawsuit, financial difficulties (including fiscal mismanagement), administrators focused on a narrow concept of efficiency, a utilization review board, forms and more forms, and a pervasive sense that modern (including Evidence Based Medicine) is always good. All these and more create a “relentless pressure squeezing the hospital’s Old Medicine into the New Health Care” (p. 322). Sweet demonstrates that her Slow Medicine can actually save money in the long run. Confident that her way is better, she proposes an “ecomedicine unit” that she would match against the modern, “efficient” units in a two-year experiment. (For more information on her concept of ecomedicine proposal, see http://www.victoriasweet.com/.)
As the hospital is “modernized,” many important features of the old place are gone and many “new and improved” aspects don’t work. Somehow there are no rooms for physicians in the new building while there is plenty of space for administrators and managers. A sophisticated computer system doesn’t work. Sweet doesn’t say “I told you so” directly, but we get the picture.
The third strand is Sweet’s investigations of spirituality and pilgrimage. She is fascinated by Hildegard’s notions of the healing power of nature, the ability of the body to heal itself, and wholeness as an aim for a person and for a community. Sweet attends a Swiss conference on Hildegard. She hikes the pilgrimage route from France to Santiago de Compostela in four installments and considers notions of pilgrimage. She feels called to pursue her ecomedicine project and to write this book.
By the end of the book, both Sweet and Laguna Honda have changed and are now headed in different directions.
Summary:The year is 1990; a lump in the groin which Harvey had ignored has enlarged and his wife convinces him to have it checked out. It turns out to be a lymphoma and thus begins the yearlong chronicle. Intertwined with the couple's struggle with diagnosis and treatment is their decision to buy a home, and Joyce's work with an international group of teenagers who have survived war. However, the bulk of this unconventional work depicts in a stark and straightforward way the energy necessary to survive not just cancer, but cancer treatment.
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.
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.
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.
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 Comedy, Gulliver'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.
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.