Showing 21 - 30 of 826 annotations tagged with the keyword "Patient Experience"

Tithonus

Tennyson, Alfred

Last Updated: Jul-28-2016
Annotated by:
Clark, Mark

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Tithonus” is a dramatic monologue that imagines the once handsome, magnificent Trojan prince to be well-advanced in an unfortunate state brought about by negligent gods and his own lack of foresight.  Exultant over the blessings of his youth, he’d asked Aurora, goddess of the dawn, for eternal life, and she had obtained Zeus’s permission to grant the request.  But Tithonus had failed to ask for eternal youth with his immortality—and neither Aurora nor Zeus had managed to recognize that this feature of the request might be important—so that Tithonus spends eternity growing increasingly decrepit.  In Tennyson’s poem, Tithonus addresses Aurora, hoping he might persuade her to reassign him his mortal status and allow him to die.

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Deafening

Itani, Frances

Last Updated: Jul-24-2016
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Born in 1894, Grania becomes deaf following scarlet fever at the age of two. Her mother never quite recovers from misplaced guilt over this outcome and is withdrawn. But Grania is well loved by the whole family, who run a hotel in a small town. Her older sister and their Irish-born grandmother see the child's intelligence and find ways to communicate with her by signs and words; they urge the parents to send her to a special school.By age nine, Grania is sent to the famous School for the Deaf in Belleville Ontario, founded by Alexander Graham Bell. Although the school is only a short distance from her home on the north shore of Lake Ontario, the child is not allowed to return for nine long months. At first she is overwhelmed with homesickness, but soon she finds kindred spirits among the other students and teachers and adapts to the life of the institution.

By 1915, her studies complete, Grania works at the school. There, she meets her future husband, Jim, a hearing man who is assistant to the town doctor. They marry, but only two weeks later, Jim leaves to serve as a stretcher bearer in the war in Europe. Fear and death haunt the people at home and abroad for years. Jim writes what little he is allowed of the horror and danger around him, always promising to return. Grania waits and writes too, slowly growing hopeless and angry, as devastating telegrams arrive one after the other.Her sister copes with the return of a grievously disfigured husband, wounded more in mind than in body. In late 1918, Grania falls ill in the influenza epidemic and is delirious for weeks. When she recovers, frail and bald, she learns of the loss of her beloved grandmother who died of the fever caught by nursing her. At the same moment she hears of the war's end and begins to believe again in hope.

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The Father

Zeller, Florian; Hampton, Christopher

Last Updated: Jul-12-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Plays — Secondary Category: Performing Arts / Theater

Genre: Play

Summary:

This annotation is based on a live performance presented by the Manhattan Theater Club at the Samuel J. Friedman Theater  in New York City that ran between April and June of 2016. The play was nominated for a 2016 Tony Award for best play, and Frank Langella won the 2016 Tony Award for best performance by an actor in a leading role in a play. In supporting roles were Kathryn Erbe, Brian Avers, Charles Borland, Hannah Cabell, and Kathleen McNenny.
 
The Father is the story of an older man with Alzheimer’s disease (André) and his progression through first living on his own, then living with his daughter (Anne), and finally living in a nursing home. Or, is it? It’s hard to tell, and that is the intention of the playwright, Florian Zeller, who told The Guardian (2015), “The Father is about an old man lost in the labyrinth of his mind.” The objective of the play is to bring audience members into the actual dementia experience so that rather than witnessing André’s disorientation they feel his disorientation.  

The director, Doug Hughes, creates the audience experience through an interplay among set designs, lighting effects, repeated scene sequences, and time loops as contexts for various symptom manifestations like memory loss, paranoia, anger, and lasciviousness. All the scenes take place in one room that serves at different times as André’s flat, Anne’s flat, and a nursing home room. The furnishings of the room change based on the supposed setting, but the walls are exactly the same for all of them. In different scenes, André is not always sure where he is, and neither is the audience.  

Early in the play, André hears Anne tell him she’s relocating from Paris to London with her lover, but she is present to him in most of the scenes thereafter and until the end of the play when he’s told by a nurse that Anne had moved to London some time ago. Had she really left Paris and was never actually there in all those other scenes? He wonders and so does the audience. In other scenes, the way characters from the past and present enter and exit distorts time for André, and so while audience members know the linear trajectory of the disease course, they can’t be sure of where they are in that course during a given scene. With the last scene taking place in André’s nursing home room with the same walls seen in his flat and Anne’s flat, the audience can’t be faulted for wondering whether all that came before was just one of André’s hallucinations.  

The play does not keep audience members in a perpetual state of confusion and despondency. Farcical elements are peppered throughout that produce occasional laughs, such as when Anne contests André’s account of a previous conversation, he suggests it’s she who has the memory problem: “You’ve forgotten. Listen, Anne, I have a feeling you sometimes suffer from memory loss. You do, I’m telling you. It’s worrying me. Haven’t you noticed?”

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Summary:

The aim of these reflections on uncertainty in medicine is not to discredit evidence-based medicine or to incite suspicion of the careful and caring processes by which most clinicians arrive at the advice they give.  Rather it is to change conversations among practitioners and between them and their patients in such a way as to raise everyone’s tolerance for the inevitable ambiguities and uncertainties we live with.  If the public were more aware of the basic rules of mathematical probabilities, how statisticians understand the term “significance,” and of how much changes when one new variable is taken into account—when a new medication with multiple possible side-effects is added to the mix, for instance—they might, Hatch argues, be less inclined to insist on specific predictions.  He goes on to suggest that there is something to be gained from the challenge of living without the solid ground of assurances.  When we recognize the need to make decisions with incomplete information (a condition that seems, after all, to be our common lot) we may refocus on the moment we’re in and see its peculiar possibilities. Changing the conversation requires a critical look at medical education which, Hatch observes, “measures a certain type of knowledge essential to medical practice, but it consequently engenders a conception of medicine best described as overly certain . . . .” 

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We Are Not Ourselves

Thomas, Matthew

Last Updated: Jun-20-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

In 1951, Eileen Tumulty, the novel’s main character, was nine years old and living with her Irish immigrant parents in the Woodside section of Queens, New York. The novel follows Eileen straight through the next 60 years, but concentrates on the years covering the time of her husband’s Alzheimer’s disease.    

Eileen was forced to learn how to manage a household at a very young age when first her mother was kept in a hospital for 8 months after a hysterectomy, and then again when her mother became incapacitated by alcoholism. Eileen had reason to think this life was her destiny until she accompanied her father to a better part of Queens. There she saw “places…that contained more happiness than ordinary places did.” She concluded, “unless you knew that such places existed, you might be content to stay where you were.” (pp. 15-16) Eileen’s ambition was ignited. While continuing to manage the household and care for her mother, she does well in school, becomes a nurse, and eventually moves up the nursing management at various hospitals.  

Eileen’s ambitions encompassed ideas on her eventual mate. She chooses Ed Leary despite hoping for someone who was not quite so Irish and not quite so much of the same place. Ed was a promising neuroscience graduate student who she thought could be a high achiever with the right motivation: “If there was anything she could help him with, it was thinking big.” (p. 97) Her motivation was not enough and neither were the many offers he received from life science companies. He became a professor at a local community college. He had a passion for teaching students who attend community colleges and he could never see himself anywhere else—for love or money. Ed’s intransigence frustrated Eileen, but she accepted it and plowed ahead. She studied the possible ways of escaping the old neighborhood and also delivered a son she thought she’d never have after years of futile efforts.  

It doesn’t go smoothly. While she is getting surer of where they would go, Ed begins to exhibit disconcerting behaviors. For them to live in Bronxville, Eileen will have to accept a house that needs a lot of money and attention to rehabilitate. The remainder of the story is about how Eileen simultaneously manages Ed’s rapid deterioration from what eventually is diagnosed as Alzheimer’s disease, her job requirements, and a son progressing from adolescence through college.  

We Are Not Ourselves
touches on many of the aspects involved in prolonged illness including the daily struggles managing the care of someone with progressive dementia, complexities of health care delivery systems, frustrations with byzantine health care coverage, and threats to relationships among the individual family members with one another, and the grace that can manifest during the bleakest moments. The author does not dwell on all these issues, but gives them enough attention so that their effects will be recognizable to many readers who have experienced them. In doing so, he was able to draw from his own experiences with his father who was stricken with early onset Alzheimer’s disease.

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Summary:

Samuel Shem's (Stephen Bergman) The House of God, first published in 1978, has sold over two million copies in over 50 countries (see annotation).  Its 30th anniversary was marked by publication of Return to The House of God: Medical Resident Education 1978-2008, a collection of essays offering historical perspectives of residency education, philosophical perspectives, literary criticism, and women's perspectives, among others. Contributors include such well-known scholars as Kenneth Ludmerer, Howard Brody, and Anne Hudson Jones, as well as physician-writers Perri Klass, Abigal Zuger, Susan Onthank Mates, and Jack Coulehan.  The closing section, "Comments from the House of Shem," includes an essay by psychologist and scholar Janet Surrey (Bergman's wife) and one by "both" Samuel Shem and Stephen Bergman. 

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Attending Others

Volck, Brian

Last Updated: Apr-11-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This memoir of a life in medicine takes the writer from St. Louis to a Navajo reservation to Central America to the east coast and from urban hospitals to ill-equipped rural clinics. It offers a wide range of reflections on encounters with patients that widen and deepen his sense of calling and  understanding of what it means to do healing work.  He learns to listen to tribal elders, to what children communicate without words, to worried parents, and to his own intuition while calling on all the skills he acquired in a rigorous medical education.  Always drawn to writing, Volck takes his writing work (and play) as seriously as his medical practice, and muses on the role of writing in the medical life as he goes along.

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Annotated by:
Glass, Guy

Primary Category: Literature / Plays

Genre: Essay

Summary:

This is a collection of essays by (mostly British) artists, performers, and academics on the intersection between medicine and theater.  It appears in a series entitled “Performance and Science: Interdisciplinary Dialogues” put out by Bloomsbury Methuen Drama.  The introduction makes it clear there are many points of convergence beyond the scope of this volume, such as how medicine is depicted in plays and therapeutic uses of theater (e.g. drama therapy).  The focus here, then, is on “the ways in which the body is understood, displayed and represented in performance” (p. 11).  And the “medical body” of the title refers to one that is ’acted upon’ by illness or disability and/or by the diagnostic and therapeutic activities of the medical profession” (Ibid).  

The book is divided into three sections: “Performing the Medical,” “Performing Patients,” and “Performing Body Parts.”  The first section includes an essay by Roger Kneebone, a surgeon, who explores the parallels between his field and theatrical performance.  Kneebone has devised simulations that enable laypersons to get a sense of what it is like to participate in surgery.  In his view, this encourages cross-fertilization of ideas.  For example, his collaboration with a jazz pianist has demonstrated to him that musical improvisation, in its spontaneity, is somewhat like emergency surgery.  And his work with a choreographer led to the development of a dance piece depicting the movements of a surgical team during a procedure.   
 

In the second section we read about Brian Lobel, a theater artist who has used his experience with testicular cancer to create a solo performance piece entitled “BALL.”  This not only allowed Lobel to “regain a sense of mastery over the illness experience” (p. 88), but has also earned him a niche within the theater community.  Lobel now works with other cancer sufferers helping them develop their own narratives in a project called “Fun with Cancer Patients.”  

The final section of the book includes a description of “Under Glass,” a forty-minute performance piece consisting of eight specimen jars each containing a solo performer, said to be “at once museum exhibit, gallery and medical laboratory” (p. 141), which also provides the book's front cover image. "Under Glass" was devised by Clod Ensemble, whose Performing Medicine project is known for its teaching programs in numerous London medical schools.  Meant to provoke discourse about the public display of specimens, it brings to mind the Victorian “freak show” as well as the more recent controversial touring Body Worlds exhibition of plastinated cadavers and body parts.

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The Last Days of Ptolemy Grey

Mosley, Walter

Last Updated: Mar-07-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Walter Mosley writes in various genres but is probably best known for his mysteries. His 2010 novel, The Last Days of Ptolemy Grey, could be considered another one of his mysteries, but the mystery plot takes a secondary role. Featured more prominently is the struggle the main character, Ptolemy Grey, has with dementia.   

The reader first encounters Ptolemy Grey when he is 91 years old and living alone in an apartment he has inhabited in South Central LA for more than 60 years. Both he and the apartment are in appalling shape. The apartment is cluttered, disorganized, and dysfunctional—as is his aging brain. He knows his mind is failing and seems to him as if it “had fallen in on itself like an old barn left unmended and untended through too many seasons.” (p.153)

Throughout the novel, Mosley presents aspects of dementia and some of its oddities. For example, while Ptolemy is riding on a bus through his town, certain sights trigger clear memories from his childhood 80 years before. At the same time he is unsure where he is going or why. Mosley also shows how people can possibly realize they are slipping into dementia, for example, when Ptolemy stops talking to a friend once “he could see in her eyes he wasn’t making sense.” (p. 122)

Ptolemy’s great-grandnephew Reggie provides him with the assistance he needs to barely maintain his lonely existence in squalid conditions. When Reggie dies, a new person comes into his life. Robyn, a 17-year-old orphan living with Ptolemy’s grandniece, begins to straighten out his apartment and then his mind.    

As Robyn gets Ptolemy’s apartment more organized and functional, Ptolemy’s mind starts to get more organized and functional as well, but only a bit more. Unsatisfied with his progress, Robyn takes Ptolemy to a physician who has an experimental drug for dementia. Ptolemy is told that if he takes the drug he will regain his mental acuity but probably not live more than a few weeks, or months, at best. Without hesitation he takes the drug—“I wanna make it so I could think good for just a couple a mont’s, Doc” (p. 126)—and rapidly regains many memories and mental capacities. During the time he has with his newfound mental agility, Ptolemy is able to make good on a commitment from his childhood and to solve the mystery of Reggie’s death. While the experimental drug enables Ptolemy to wrap up his business, it also produces a rather violent end to his life.

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When Breath Becomes Air

Kalanithi, Paul

Last Updated: Feb-18-2016
Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Paul Kalanithi, diagnosed with stage IV metastatic lung cancer when he was a neurosurgery resident at Stanford University, was faced with a decision. Should he truncate his career in neurosurgery in order to become a writer - a career he had always envisioned for himself after completing a couple of decades of neurosurgery practice? Married to Lucy Kalanithi, an internist he had met in medical school, Paul’s career and future had looked bright and promising. But as he entered his final year of a seven-year residency, symptoms of excruciating back pain and significant weight loss began. Garbed in a hospital gown, he examines his own CT scan – this is how we meet Paul at the beginning of the Prologue. He then writes of the relatively brief period of misdiagnosis prior to the CT scan. With the initial negative plain x-rays, he is started on nonsteroidal anti-inflammatory drugs. But breakthrough pain and continued weight loss leads to the CT. Paul the physician understands the death sentence the images portend; Paul the patient is just beginning his journey. The diagnosis and treatment cause him to reassess his decisions about his life, to decide to father a child even though he knows he will never see the child grow up, and ultimately to write a memoir, essentially for his daughter.

Paul had graduated from Stanford with undergraduate and master’s degrees which reflected his dual love of literature and science. He combined these in a second master’s degree from Cambridge University in the history and philosophy of science and medicine before attending Yale for his medical degree. He and his wife return to California for residencies. The book is largely a blend of his dual interests: a deep and abiding love and faith in literature and how words can reveal truths, and a passion for the practice and science of neurosurgery. The rupture of fatal illness into his life interrupts his dogged trajectory towards an academic medical career, and, like all ruptures, confounds expectations and reorients priorities.

The book has five parts: a foreword by physician-writer Abraham Verghese, who notes the stunning prose Paul produced for an initial article in The New York Times and exhorts the reader to “Listen to Paul” (page xix); a brief prologue; two parts by Paul Kalanithi (Part I: In Perfect Health I Begin, and Part II: Cease Not till Death); and a stunning, heart-breaking epilogue by Lucy Kalanithi. In the epilogue, written with as many literary references and allusions as her husband’s writing includes, Lucy provides the reader with a gentle and loving portrait of her husband in his final days, reaffirms his joy in their daughter Cady, and chronicles how she kept her promise to her dying husband to shepherd his manuscript into print.

The bulk of the book is memoir – a childhood in Arizona and an aversion to pursuing a life in medicine due to his hard-working cardiologist-father, experiences at Stanford which eventually led him to reverse his decision to avoid a medical career, the stages of his medical career and caring for patients, and his devastating cancer. Though initially responsive to treatment—and indeed, the treatment enables him to complete his residency and decide to father a child with Lucy—the cancer is, as prognosticated from the diagnosis, fatal.

What makes this memoir so much more than an exercise in memory and a tribute to the herculean effort to write while sapped by cancer and its treatment, are the philosophical turns, the clear love of words and literature, and the poignancy of the writing. He begins reading fiction and nonfiction again: “I was searching for a vocabulary with which to make sense of death, to find a way to begin defining myself and inching forward again. The privilege of direct experience had led me away from literary and academic work, yet now I felt that to understand my own direct experiences, I would have to translate them back into language…I needed words to go forward.” (pp 148-9) Paul’s writing ends with what is arguably some of the most poetic prose ever written. He concludes by speaking directly to his infant daughter: “When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.” (p. 199)

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