Showing 31 - 40 of 829 annotations tagged with the keyword "Patient Experience"

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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The Death of Cancer

DeVita, Vincent

Last Updated: Feb-04-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The book offers a detailed account by one of the nation’s leading cancer researchers of developments in chemotherapy over the past several decades, as well as the recent history of surgical and radiation treatments in the “war on cancer”—a term he resisted at first but finally embraced with full understanding of its implications.  The narrative touches on many of the writer’s own struggles over economic, political, and moral implications of what a NYT reviewer described as a “take-no-prisoners” approach to cure.  He also includes stories about disagreements with other researchers that give some insight into the acrimony that is part of high-stakes science.  At the NIH and later as head of the National Cancer Institute, DeVita faced many decisions about distribution of resources, how much to put patients at risk, and whom to include in clinical trials.  He provides his own point of view on those controversies frankly.  Not much mention is made of the causes of cancer, of nutritional or other complementary approaches, or the environmental factors in the spread of cancer. The strong focus on the book is on the development of chemotherapeutic treatments that have succeeded in raising survival rates, though few current statistics are cited.

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Kozol tells a multilayered story about himself and his father, a distinguished physician who becomes increasingly demented by Alzheimer’s disease, starting at age 88. A neurologist, Dr. Harry Kozol is able to diagnose with great specificity his own disease.     
          
Son Kozol describes his father’s initial symptoms and the slow decline, a direction that is sadly and fatefully, clear. The son goes on walks with him, describes their conversations, arranges for paid companions, and puzzles about what must be “a life beneath the life” of his progressively inarticulate father.
           

Over the 14 years of this illness, there are some medical mishaps—including problems in continuity of care—depletion of the family’s money, and Jonathan’s hesitation to use a DNR (Do Not Resuscitate) order for his father or for his aging mother. He writes of his doubts, uncertainties, and mixed emotions. When his father is actively dying, Kozol dawdles elsewhere with lists and papers “obsessively.” He understands this, in retrospect, as denial. Nevertheless he arrives at the hospital and places his ear on his father’s chest, hearing breaths come slower and slower until death. Dr. Kozol dies in 2008 at the age of 102.
           

Alternating with this story are long passages about Dr. Kozol’s professional life, including his work with Eugene O’Neill and family, also Patty Hearst and Albert DeSalvo (“The Boston Strangler”). For the latter two, he is an expert witness in court cases. These passages illustrate his many skills, tenacity, and ideals.

A 25-page Epilogue written a half a dozen years later casts a different light on the father-son relationship. While the bulk of the book shows a loving, respectful relationship, the Epilogue describes tensions and disagreements between the two from Jonathan’s childhood to later years. The father criticizes what he perceives as failures, lack of ambition, poor choices, and the like. Kozol describes his own illustrious career, often in directions his father disapproves. In later years, however, Kozol accepts some of his father’s advice and understands their status more as equals. In another seven years, however, Dr. Kozol’s mind starts its difficult path, and the son becomes the caregiver to the father.  

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Side Effects May Vary

Murphy, Julie

Last Updated: Jan-07-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

At 16, Alice is diagnosed with leukemia, and is given a dire prognosis.  Assuming she has months to live, she undergoes chemotherapy with the support of her lifelong friend, Harvey, whose frank and deepening love she is uncertain about returning.  On days when she has enough energy and the nausea abates, she works on a "bucket list" with Harvey's sometimes reluctant help, since the list includes revenge on two classmates who have hurt and humiliated her.  When, months into treatment, she goes into unexpected full remission, Alice has to come to terms with the consequences of some of her revenge strategies and reassess the depth of a relationship with Harvey that may last far longer than she thought she had.  Given an opportunity to choose life on new terms, she considers those new terms in a more adult way, chastened, focused, and grateful for a chance to make new choices.

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4:48 Psychosis

Kane, Sarah

Last Updated: Dec-15-2015
Annotated by:
Glass, Guy

Primary Category: Literature / Plays

Genre: Play

Summary:

4:48 Psychosis was the last work of controversial British playwright Sarah Kane.  In 1999, soon after her twenty-eighth birthday, having completed the play, she took her own life.  

Naturally, these tragic circumstances can never be far from the reader’s mind. But to dismiss 4:48 Psychosis as a suicide note is to negate Kane’s achievement.  The play was, in fact, meticulously researched and carefully written. Kane’s first play, Blasted, had considerable shock value, and throughout her short career she pushed the boundaries of what might be considered stageworthy. 4:48 Psychosis is both the final product of a life marked by recurrent episodes of depression (the play gets its name from the time she found herself waking up every day during the last episode) and the final chapter in her writing’s progression towards disintegration. It represents her deteriorating mental state, but is also a conscious stylistic decision. 
 

The text of 4:48 Psychosis is unrecognizable as a conventional play.  The author has left neither stage directions nor an indication of the number or gender of performers. Words and numbers appear to be arranged ornamentally on the page. However, meaning that is not apparent emerges from the chaos, as in the way that sense may be made from a psychotic mind.  The numbers are not random, but “serial 7’s” from the mental status exam.  Quotations from the Book of Revelations appear side by side with excerpts from a medical chart, and extracts from self-help books are interspersed with dialogue between a patient and her psychiatrist.  The latter provides an illustration of the patient’s attempt to reconcile her anger with her neediness: “I cannot believe that I can feel this for you and you feel nothing” (p. 214). We learn too of her struggle with self-mutilation and her suicidal impulses, and follow her moods from dark humor to despair to hopefulness.  Indeed, the last line of the play, “Please open the curtains” (p. 245) appears to leave open the possibility that she will pull through.  That option was unfortunately not the one the author chose for herself. 

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Call the Midwife

Worth, Jennifer

Last Updated: Dec-15-2015
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Many are familiar with these stories from the author's practice as a midwife among the urban poor in London's East End in the 1950s.  Each piece stands alone as a story about a particular case. Many of them are rich with the drama of emergency interventions, birth in complicated families (most of them poor), home births in squalid conditions, and the efforts of midwives to improve public health services, sanitation, and pre- and post-natal care with limited resources in a city decimated by wartime bombings.  As a gallery of the different types of women in the Anglican religious order that housed the midwives and administered their services, and the different types of women who lived, survived, and even thrived in the most depressing part of London, the book provides a fascinating angle on social and medical history and women's studies.

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Skin for Ricky

Schiedermayer, David

Last Updated: Dec-10-2015
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The physician-narrator is looking in on a 30 year old patient named Ricky. Readers immediately learn that the patient has cerebral palsy: his ear mashed flat, his neck contorted into a tight C, almost quadriplegic. These first stanza clinical observations are indisputable. The narrator then shifts from the medical facts to more subjective thoughts ranging from Ricky’s previous treatment responses and medications to Ricky’s adult heterosexual response to the proximity of a female, and finally to the narrator’s own wishes for this patient. Ricky’s parents, the narrator notes, have similarly but uncomfortably witnessed their son’s ogling response to a pretty nurse or doctor or a provocative adult television image. The parents’ response, he notes, to these observations has been to redirect Ricky’s focus by switching the channel to Nickelodeon, a program geared towards children.  Not unlike situations in several writings by William Carlos Williams, this physician has moved from objective medical information to his own interior thoughts about Ricky’s circumstances and confinement.  Rather than sticking with the facts associated with the patient’s medical condition, he wonders, imagines, and expresses in this poem seemingly un-doctorly thoughts. 

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