Showing 31 - 40 of 826 annotations tagged with the keyword "Patient Experience"

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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Fracture

Miranda, Megan

Last Updated: Dec-08-2015
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

 After eleven minutes underwater at near-freezing temperature, Delaney Maxwell, who appeared dead upon rescue, is revived.  Unlikely as her survival seems, the return of apparently normal brain function seems even more unlikely, yet after a few days she is allowed to go home with medications and resume a near-normal life. But after-effects of her trauma linger, the most dramatic of which is that she develops a sixth sense about impending death. She hides this recurrent sensation from her parents, and from her best friend, Decker, who rescued her, but finds that she shares the experience with a hospital aide who, like her, suffered a coma after a car accident that killed his family members. Like her, he senses death in others. Gradually Delaney realizes that “normal” isn’t a place she’s likely to return to, and that Troy, the aide whose life has been a kind of “hell” since his own trauma, is even further from normal than she. Troy seems to feel that it is his mission to help hasten death for those who are dying, to prevent prolonged suffering.  The story follows her efforts to stop him, and to communicate with close friends, especially Decker, in spite of the secret she carries about her own altered awareness. When her efforts to save a friend who is dying of a seizure fail, Delaney faces another moment of crisis, compounded by Troy’s own suicidal desire to end his own suffering and hers with it. In the midst of these new traumas a clarity she has lost about what it means to choose life returns to her, and with it the possibility of a loving openness with parents and friends about the mysteries of her own brain and heart.

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El Deafo

Bell, Cece

Last Updated: Nov-30-2015
Annotated by:
Lam, Gretl

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

El Deafo is a graphic novel and memoir describing the author’s childhood experiences after she loses her hearing from meningitis at age 4. During her first year in school, she attends a special class with other students who also wear hearing aids. They have fun and learn how to lip read together. However, Cece’s family moves to a new neighborhood the following year, and she is forced to attend regular classes at a new school. In order to understand her teachers, she gets a powerful new hearing aid known as the Phonic Ear, which is a large device she must wear strapped to her chest. The Ear makes her feel more self conscious than ever. She struggles to fit in and make friends at school, and often feels very lonely. However, she discovers that the Phonic Ear also gives her a “superpower” – she can hear what her teacher is saying and doing around the school, even when they are not in the same room together! To cheer herself up, she pretends she is a superhero named El Deafo with super-hearing. Even better, her newly realized powers soon make her the popular kid at school because she can warn everyone to quit goofing off when the teacher is coming.

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The Physician

Gordon, Noah

Last Updated: Nov-17-2015
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

When nine-year-old Rob Cole, child of poor 11th-century English farmers, loses his mother, he is consigned to the care of a barber-surgeon who takes him around the countryside, teaching him to juggle, sell potions of questionable value, and assist him in basic medical care that ranges from good practical first-aid to useless ritual.  When, eight years later, his mentor dies, Rob takes the wagon, horse, and trappings and embarks on a life-changing journey across Europe to learn real medicine from Avicenna in Persia.  Through a Jewish physician practicing in England, he has learned that Avicenna’s school is the only place to learn real medicine and develop the gift he has come to recognize in himself.  In addition to skill, he discovers in encounters with patients that he has sharp and accurate intuitions about their conditions, but little learning to enable him to heal them.  The journey with a caravan of Jewish merchants involves many trials, including arduous efforts to learn Persian and pass himself off as a Jew, since Christians are treated with hostility in the Muslim lands he is about to enter.  Refused at first at Avicenna’s school, he finally receives help from the Shah and becomes a star student.  His medical education culminates in travel as far as India, and illegal ventures into the body as he dissects the dead under cover of darkness.  Ultimately he marries the daughter of a Scottish merchant he had met but parted with in his outgoing journey, and, fleeing the dangers of war, returns with her and their two sons to the British Isles, where he sets up practice in Scotland.

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Best Boy

Gottlieb, Eli

Last Updated: Nov-09-2015

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Best Boy is a novel about Todd Aaron, a 54-year-old autistic man who has lived for 40 years in a Payton LivingCenter (sic); he was involuntarily committed to this facility. Todd has been in five previous places for congregate living, but Payton seems to be the best for him, thanks in part to a loving caregiver, Raykene. Todd has accepted the institutional “Law” of Payton and takes his drugs right on schedule, including Risperdal, an antipsychotic that slows him down, making a “roof” over him and muffling, he says, “the voice in my brain.”  The story is told from Todd’s point of view, often with startling imagery:  he pictures his dead parents turning into giant cigars, a raindrop “explodes,” and, when upset, he rocks back and forth and feels “volts.”  Now and then he recalls that his mother called him her “best boy.”
   
Into this stable setting come three personified disruptions. The first two are fellow patients, Terry Doon (a pun on “doom”?), a brain-injured roommate who teases, torments, and bullies Todd, and Martine Calhoun. While Terry disrupts Todd’s living space, Martine is a siren who lures him to different parts of Payton’s campus; she is also a rebel who urges him to stop taking Risperdal and shows him how to hide the drug in his hand and get rid of it later.   

The third is Mike Hinton, a day staffer who lies, manipulates, and in general mistreats Todd. Todd understands Hinton as evil and entertains violence against him—but does not act. Hinton has sex with a female patient who dies, apparently a suicide, although the language of Payton’s staff, as reported by Todd, euphemistically hides the truth.

Todd has the “Idea” of escape and sets out, on foot, to go 744 miles to “home.” A state policeman soon returns him to Payton.

Now and then Todd’s younger brother Nate calls, often while drinking. Near the end of the book, Nate and his wife Beth take Todd to his childhood home, where he had been abused physically and mentally. In a moving scene, Todd enters the only unchanged area, a crawl space and feels the return he yearned for.            

All three tormentors leave Payton, and there is a surprising resolution for Todd.  The balance and harmony of Payton’s LivingCenter are restored, and Todd, reminded by Raykene, affirms that “Somebody always loved me.” 

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