Showing 131 - 140 of 912 annotations tagged with the keyword "Patient Experience"

An Unquiet Mind

Jamison, Kay Redfield

Last Updated: Oct-06-2015
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The author, Professor of Psychiatry at Johns Hopkins University School of Medicine, is an authority on manic depressive illness. With this powerful, well-written memoir she "came out of the closet," publicly declaring that she herself had suffered from manic depressive illness for years. Jamison describes the manifestations of her illness, her initial denial and resistance to treatment with medication, attempted suicide, and her struggle to maintain an active professional and satisfying personal life.The author was "intensely emotional as a child," (p.4) and in high school first experienced "a light lovely tincture of true mania" (p.37) during which she felt marvelous, but following which she was unable to concentrate or comprehend, felt exhausted, preoccupied with death, and frightened. (pp. 36-40) Interested in medicine as an adolescent, she pursued her goal in spite of mood swings and periods of mental paralysis. Jamison completed graduate work in clinical psychology; shortly after obtaining a faculty appointment "I was manic beyond recognition and just beginning a long, costly personal war against a medication that I would, in a few year’s time, be strongly encouraging others to take [lithium]." (p. 4)Jamison eventually, through strong support from friends and colleagues, excellent psychiatric care, and her own acceptance of illness, has been able to reach a state of relative equilibrium--tolerable levels of medication (fewer side effects) and dampened mood swings. But she makes clear that she must stay on lithium and remain vigilant.

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The Man with Stars Inside Him

Coulehan, Jack

Last Updated: Oct-06-2015
Annotated by:
Aull, Felice
Chen, Irene

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

During the physical examination of an elderly cancer patient, the doctor considers the tell-tale symptoms of pneumonia. While the patient is dying, the physician imagines that the symptoms represent the birth of a universe and that the patient is becoming a part of the galaxy.

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What the Body Told

Campo, Rafael

Last Updated: Oct-06-2015
Annotated by:
Terry, James

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Many of these poems are confessional accounts of gay love and sexuality. Another group clearly draw on the author’s clinical experiences as a physician. A few poems (e.g. "For You All Beauty", "Her Final Show") mix those broad categories in talking about the care of AIDS patients.The 11 short poems under the sequence title "Ten Patients, and Another" are the most clinical. They mimic clinical presentations during rounds in several ways: individual poems under patient initials--Mrs. G, John Doe; opening lines with the patient’s age, race, and gender; even presenting complaints with hospital shorthand. For example, in "Kelly" Campo begins: "The patient is a twelve-year-old white female. / She’s gravida zero, no STD’s. / She’s never even had a pelvic. One / month nausea and vomiting. No change / in bowel habits. No fever, chills, malaise." But in this poem and others of the sequence, the clinical gradually turns to the personal: "Her pelvic was remarkable for scars / At six o’clock, no hymen visible, / Some uterine enlargement. Pregnancy / Tests positive times two. She says it was / Her dad. He’s sitting in the waiting room."The cumulative effect of the series is a kind of horror at hospital cases and how they get there: a three-year-old who’s ingested cocaine, a homeless man with eyelids frozen shut, one man beaten, another man shot, an abused wife, a suicide, a drug overdose. To feel empathy for these cases, and to turn them into poetry, Campo has practiced the art of medicine as a form of love.Campo also writes as a patient who has experienced a serious arm fracture and subsequent threat of cancer in the 16-poem sequence "Song Before Dying." This changes his perspective on care-giving, as he writes in "IX. The Very Self." " . . . more dying waits / Downstairs for me. I almost hear their groans. / Same hunger, bones. Same face we all consumed. / As I examine them, I find the tomb / Toward which they lead. I know it is my own."

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Welcome to Cancerland

Ehrenreich, Barbara

Last Updated: Sep-28-2015
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

A “drive-by mammogram” leads the writer, Barbara, to a biopsy of a suspicious breast lump. She awakes from the fog of anesthesia to hear the surgeon’s bland remark: “Unfortunately, there is a cancer.” Welcome to Cancerland, a place where her identity is displaced by the vast implications of the diagnosis, another operation, and arduous months of chemotherapy. What works for her own peace of mind has little to do with the trappings of pink-ribbon sentimentalism in the survivors groups.

Barbara resorts to her knowledge of cell biology, asks to see her own tumor under the microscope, and contemplates the meaning of visualizing the malignant cells even if she does not believe the exercise can help her. She dissects the rank commercialism and denial in the survivor movement: let me die of “anything but the sticky sentimentalism in that Teddy Bear.” She decries the claims that cancer therapy makes better skin, better hair, and better people, with better bodies, especially when an implant on one side subtends a cosmetic procedure on the other.

Posting these thoughts on a chat line, she discovers that most women berate her attitude and suggest she needs a psychiatrist. But one dying woman agrees with her distress, and writes of having cancer, “IT IS NOT OK.” Admitting feminists can be found in the “survivor” community, Barbara faults its underlying tone for being coercively optimistic, infantilizing, and insulting to the dying and the dead. She is angry. Very angry, and her “purifying rage” spares no one: doctors, support groups, feminists, drug companies, and the Cancer Society. Nevertheless--and in keeping with her earlier work--she credits the women’s movement with helping to rid the world of three medical evils: the radical Halsted mastectomy, the practice of proceeding to mastectomy from biopsy without waking up the patient, and high dose chemotherapy.

Two disturbing ironies bring the essay to a close. The first, is the possibility that mammograms may not be saving or even prolonging lives, even as they detect cancers; they make women dwell in Cancerland for longer and cause too many “unnecessary” biopsies. The mammogram is a ritual, she says. The second irony lies in the role of the pharmaceutical industry which fosters the pink power movement –the ribbons, the teddy bears, the marathons-- while manufacturing the expensive poisons that seem to have anticancer side effects. These same companies, she argues, have also manufactured carcinogenic pesticides that pollute the environment. Having profitably poisoned women into having breast cancers, they continue to profit from poisons of chemotherapy.
She faults both the “cult” of the survivors movement and the American Cancer Society for their “unquestioning faith” in these imperfect instruments of action.

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Since Joy Davidman is known to most readers as the woman C.S. Lewis married late in life and lost to cancer four years after that marriage, it is likely that many readers will pick up Joy Davidman’s letters out of fondness for her husband’s Narnia stories or popular theology.  They will quickly find that the letters chronicle a life of considerable interest in itself.  Davidman was an award-winning writer herself, a secular Jew and atheist who turned hopefully to communism and then wholeheartedly to Christianity in her later years, though remaining skeptical—and acerbic—about church people.  The fact that she remained friends with her first husband after their difficult marriage broke up resulted in many of the letters in the collection, which include material Lewis fans will be glad to see, though it offers little intimate information about their lives except that they were devoted to one another through her painful final years with breast cancer.  Her account of that last illness is often matter-of-fact; she writes as though it is one of the less interesting parts of her life, which was full of intellectual pursuits, including editing some of Lewis’s later works, and of practical concerns that included caring for her two boys with whom she emigrated to England from New York.  

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None of the Above

Gregorio, I.W.

Last Updated: Jul-16-2015
Annotated by:
Shafer, Audrey

Primary Category: Literature / Fiction

Genre: Novel

Summary:

In this young adult novel, Kristin Lattimer is a high school senior who seems to have everything – good looks, two best friends Vee and Faith, excellent athleticism especially in hurdles, a scholarship to State University, and a hunk of a boyfriend. She and her boyfriend are even voted Prom Queen and King. Kristin’s dad is a single parent, as her mother died of cervical cancer when Kristin was in 6th grade. Hence Kristin’s primary sources of knowledge of adolescent changes are her Aunt Carla and her peers, and she is able, at age 18 to chalk up her lack, not only of menstruation, but also of menarche to her running practice. But when she experiences painful and incomplete intercourse, she seeks the advice of a friend’s gynecologist.

 Dr. Johnson quickly diagnoses “androgen insensitivity syndrome” and explains that AIS is “a unique genetic syndrome that causes an intersex state – where a person looks outwardly like a female, but has some of the internal characteristics of a male.” (p. 37) The gynecologist then stumbles through further explanations and concludes, “Miss Lattimer, I think that you might be what some people call a hermaphrodite.” (p. 38) To the now stunned teen, the physician further explains karyotypes, hormone levels and the “better term” intersex. Since Kristin has undescended testes, the discussion includes possible cancer risk, and Kristin’s dad is called into the doctor’s office as well.

 The reader follows Kristin’s journey of discovery – meeting a ‘specialist,’ urologist Dr. Cheng, who provides the definitive diagnosis of AIS and explains that “chromosomal sex, gender identity, and sexual orientation are all separate concepts.” (p. 59) Issues of privacy, friendship, betrayal, sexuality, community, ostracism, social media, athletic rules vis-à-vis gender, and support groups are woven into the story and Kristin learns to cope with her new diagnosis and self-awareness.

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Atul Gawande’s Being Mortal is both ambitious and synthetic, qualities that well suit his difficult subject, death.  In Western culture, there are taboos against death because it fits neither into post-Enlightenment notions of progress and perfection nor into medical notions of control, even domination of human biology. A surgeon and an investigator, Gawande draws on his patients, his family, and travels to various hospitals and other caregiving places in order to confront death and see how approaches such as hospice and palliative care can improve our understanding, acceptance, and preparation for death.

Gawande has harsh words for contemporary medicine, the supposed caregiver for the dying and their families.  Relying heavily on technique and industrial models, it ignores the deep needs of the dying and provides, instead, versions of “warehoused oblivion” (p. 188), for example long, futile stays in ICUs.

As opposed to traditional societies like India, Westerners prize the independence of individuals, a status that is, of course, never permanent. In the chapter “Things Fall Apart,” Gawande describes how longer lives are now the norm but they include chronic illnesses and inevitable decline in vitality.  Our deaths are now routinely in hospitals, not at home, and often extended—sometimes brutally—by technical support and unwillingness of doctors and families to stop aggressive treatment.       
       
Also, sadly, there are fewer and fewer geriatricians at a time when there are more and more elderly.  A good geriatrician takes a long time with each patient, is not well paid, nor does s/he do income-generating procedures. Worse yet, some training programs are being discontinued.  

Gawande illustrates his ideas with case studies of patients and describes, from time to time in the book, the elderly journeys of his grandmother-in-law and his own father.  These passages make vivid the abstract ideas of the book. But it’s not just elderly patients who face death: health calamities can come to anyone, for example, a 34-year-old pregnant woman found to have a serious cancer. Various treatments are tried without success, but family and doctors act out “a modern tragedy replayed millions of times over” (p. 183) of a medically protracted death. Finally her mother calls a halt to treatment.
               
Family members often bear a heavy load in caring for a sick elder, but many nursing homes are often worse, designed for control, not support of the patients. 

The chapter “A Better Life” describes the first in a series of places that offer much improved settings for the elderly, with birds, animals, gardens, and, in general, richer lives that have a sense of purpose.  Gawande describes hospice care, palliative care, and advanced directives (including Do Not Resuscitate orders) as improvements needed to break the norms of “treat at all costs.” The old roles of Dr. Knows-Best and Dr. Informative need to give way to physicians and others who talk with patients and families about their values, their wishes for the last days, and their preparations for death. In short, aggressive treatment should no longer be the “default setting” for hospital care.     
        
The book ends with a dozen moving pages about the death of Gawande’s father. The “hard conversations” have clarified his wishes, and hospice care has provided “good enough” days.  Pain control has done well. Then, finally, “No more breaths came.” The family travels to India to spread his ashes on the Ganges. 

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Annotated by:
Donley, Carol

Primary Category: Literature / Fiction — Secondary Category: Visual Arts / Painting/Drawing

Genre: Graphic Memoir

Summary:

A nurse-poet well-known for her empathic descriptions of patients, Cortney Davis suddenly found herself in the hospital bed with a life-threatening condition.  Although she is a masterful writer, she could not find words to capture what she experienced as a patient.  Instead, she started painting her emotions—fear, suffering, and loneliness expressed through color, line, and tone.  The first of 12 paintings in this pathography shows her lying naked on a white slab, not literally what happened but expressive of how vulnerable and helpless she felt.  Each of the 12 paintings carries an emotional and spiritual truth—often raw and miserable.  Davis accompanies each painting with a brief commentary about how and when the painting was done, explaining, for instance, why some of the figures have no facial features. But the vivid paintings speak for themselves, and they add a different way of knowing not available through words.

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Annotated by:
Donley, Carol

Primary Category: Literature / Poetry — Secondary Category: Literature /

Genre: Poetry

Summary:

Bursting with Danger and Music  reveals Jack Coulehan’s  characteristic sensitivity to contradictions, tensions, and creative energy. The book is divided into six sections, thematically held together with such headings as “All Souls’ Day” and “Levitation.”  Many of the poems are first person narrations by patients,  physicians, and observers of the natural world.  Sometimes the patients are near death, as in “Darkness is Gathering Me” and “Slipping Away,” where they observe their own dying without fear but with wonder and even a sense of celebration:   “I’m pouring through the pores/ of this room, I’m already/ feeling the jazz and hormones begin” (p. 39). In “The Internship Sonnets,” he experiences the world of the medical intern, often scared and exhausted, who is caught between his subservient duty to the chief of medicine and his own violations of that duty, such as telling the truth to patients.  Where is his primary duty?  What ought he to do in these conflicting value systems?

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Summary:

This anthology is a sequel to Pulse: The First Year (2010). Both anthologies are comprised of postings to the website “Pulse: voices from the heart of medicine,” an online publication that sends out short poems and prose pieces every Friday. As the website subtitle suggests, the topics are from the medical world, the writing is personal (not scientific), and the writers give voice to feelings and perceptions from their direct experience as care-givers, patients, or family members of patients. All the pieces are short (typically one to five pages), usually with a tight subject focus. For example, in "Touched," Karen Myers reports how massage has helped her muscular dystrophy. 

The postings in the second anthology originally appeared from April 2009 through December of 2010. Because the 87 pieces appear in the order they were published, they don’t have linear coherence. Therefore the editors of have thoughtfully provided four indices in the back of the book: by author, by title with summaries, by healthcare role, and by subject/theme.

Prose pieces vary widely in style and technique. The poems are almost all free verse, although some poets have used regular stanzas. “Depression Session,” (p. 157) is an 18-line poem by a physician about a difficult mental patient. Many of the pieces explore the intensity of medical subjects with impacts on doctor, patient, and/or family. Some of them show limits of medicine. “Pearls before swine” (p. 191) relates the experience of a third-year medical student in a rotation at the office of a racist and sexist physician. “Babel: the Voice of Medical Trauma” (p. 158) dramatically tells the story of a poorly handled birth at a hospital.  

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