Showing 1 - 10 of 835 annotations tagged with the keyword "Patient Experience"

Calcedonies

Nisker, Jeffrey

Last Updated: Jan-17-2018
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Plays

Genre: Play

Summary:

The play has two characters: Ruth and Friend (who is a male doctor).Ruth is an engaging, straight-talking quadriplegic who can zip and dance with her chin-operated wheelchair and takes delight in terrorizing medical staff both physically and verbally. She wants to write poetry and is waiting for a device to make it possible for her to use a computer. She keeps developing bedsores that threaten her life and require long admissions to the hospital before they will heal. She desperately wants to live no matter what happens, as she feels that having no mind would be worse than having no body.Friend is a male doctor with children who is ashamed of having examined her while she was unaware. Burdened with his guilt, he asks to be her “friend.” Ruth is skeptical and runs circles around him, but eventually comes to trust him and believe in his sincerity.She makes him a witness to her advance directive to instigate all heroic measures, as she is afraid of the kindly "ethical" and cost-effective arguments not to treat the disabled. But Ruth dies horribly from sepsis, and Friend is helpless to prevent it. She never obtains the device that would have allowed her to put her poems into printed words.

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Patiently Waiting For…

Nisker, Jeffrey

Last Updated: Jan-17-2018
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

An artist, Ruth, lives with quadriplegia and manages to drive (and dance) with a special wheelchair that she controls with her chin. She also enjoys terrorizing doctors in the hospital corridors, where she is seen on a regular basis because of frequent bouts of infected bedsores. She has a new computer and is “patiently waiting for” a biomedical engineer to set it up to manage, like her chair, with her chin. She wants to write, to draw, to create. But the wait list is long, technicians scarce, and every candidate deserving.

On one of her admissions, Ruth meets the physician-narrator who is appalled by a medical resident’s lack of empathy in relating her case as if she were not present. Distressed by the encounter, the doctor is all the more disturbed when he notices that Ruth’s birth date is the same as his own.

He tries to make it up to her by withdrawing from her care in order to be her “friend,” one who tries to understand and will defend her strong desire to live despite her disability. Driven by curiosity about her past, her sharp wit, and how she faces each day, the doctor never quite achieves his goal and constantly feels guilty for letting her down as an advocate and a friend, and possibly also for being able-bodied himself.  He never visited her in her group home, and when she comes to hospital in florid sepsis, he is unable to prevent his colleagues from letting nature take its course. His own bout with severe illness, possibly MS—more likely a stroke--resonates with Ruth’s plight. Long after her death, he can imagine the acid remarks that she would make about his foibles.

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Stitches

Small, David

Last Updated: Dec-28-2017
Annotated by:
Natter, Michael

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Stitches is a beautifully crafted graphic novel by award winning writer and illustrator David Small. The memoir chronicles Smalls’ life with chronic illness, focusing on his experience as a child and adolescent with cancer in the setting of an abusive upbringing. We learn through the eyes of a child what being a patient is like, and how, despite all odds Small was able to use art as a way to make a normal life for himself. 

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Summary:

Dr. Monika Renz’s work with dying patients is unusual if not unique in the way she appropriates and applies insights from Jungian depth psychology, practices available in patients’ faith traditions, and musically guided meditation to invite and support the spiritual experiences that so often come, bidden or unbidden, near the end of life.  An experienced oncologist, Dr. Renz offers carefully amassed data to support her advocacy of focused practices of spiritual care as a dimension of palliative care, but is also quite comfortable with the fact that “neither the frequency nor the visible effects of experiences of the transcendent prove that such experience is an expression of grace” because “unverifiability is intrinsic to grace.”  Still, her long experience leads her to assert not only that “grace” can be a useful, practical, operative word for what professional caregivers may witness and mediate but also that affirmation and support of patients’ spiritual, religious, or transcendent experiences in the course of dying can amplify and multiply moments of grace, which manifest as sudden, deep peace in the very midst of pain, profound acceptance, openness to reconciliations, or significant awakenings from torpor that allow needed moments of closure with loved ones.  Describing herself as “an open-minded religious person and a practicing Christian,” she reminds readers that God is a loanword, whose basic form in Germanic was gaudam, a neutral participle.  Depending on the Indo-Germanic root, the word means “the called upon” or “the one sacrificed to . . . .”  Openness to the divine in both patients and caregivers, Dr. Renz argues, can and does make end-of-life care a shared journey of discovery and offer everyone involved a valuable reminder that medicine is practiced, always, at the threshold of mystery.

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Victoria Sweet describes her training in medical school, residency, and work in various clinics and hospitals. From all of these she forms her own sense of what medical care should include: “Slow Medicine” that uses, ironically, the best aspects of today’s “Fast” medicine.   

Her dramatic “Introduction: Medicine Without a Soul” describes poor—even dangerous—care given to her elderly father at a hospital. An experienced physician, she calls Hospice and saves him from a “Death Express” the hospital has “quality-assured” (pp. 6, 8). 
 
The book continues with 16 chapters in chronological order. The first ten describe Sweet from a late ‘60s Stanford undergrad and “a sort of hippie” (p.14), next a learner of “facts” in preclinical studies at Harvard, plus the clinical rotations (including Psychiatry, Internal Medicine, Pediatrics, and electives), then an internship as a doctor and her work in various clinics and hospitals. Throughout she’s collecting skills, concepts, even philosophies (Jung, feminism, Chinese chi, value of stories). She also describes particular patients important to her learning. She dislikes “just good enough” medicine at the VA (p. 95), “unapologetic budgetarianism” (p 141), medicine that is reductive and uncaring, and futile care for dying patients.  

Halfway through, we find an “Intermission: In which Fast Medicine and Slow Medicine Come Together.” With a year off, Sweet signs on as physician for a trekking group headed for Nepal. Unexpectedly, she treats an Englishman in the Himalayas. Returning home, she treats a man whose pulse is declining and rides a helicopter with him to a hospital. She realizes that she can take on the full responsibility of being a doctor, including when to use Fast medicine and when to use Slow.  

The following chapters deal with the 1980s emergence of AIDS, a hand injury to Sweet (she sees herself as “a wounded healer,” p. 182), her new understanding of medicine as “A Craft, A Science, and an Art” (Chapter 12) and conflicts between medical care and economics-driven medicine (“checked boxes,” administrators, quality assurance, even outright corruption).  She scorns use of the labels “health-care providers” and “health-care consumers” (p. 211) and discovers Hildegard of Bingen’s medieval vision of medicine. She works for 20 years at Laguna Honda, the topic of her earlier book God’s Hotel (2012). Chapter 16 closes the book with “A Slow Medicine Manifesto.”  

Sweet pays tribute to her teachers, both in a dedication to the book, and throughout the pages: professors, preceptors, nurses—especially a series of Irish Kathleens—and patients. There are some 20 case studies of patients throughout the book, their medical dilemmas, their personalities, and Sweet’s Slow Medicine that involves creating a healing relationship with them, finding the right path for treatment, even watching and waiting.

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Plaintive Music

Domen, Ron

Last Updated: Dec-05-2017
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Physician Ron Domen's first full-length poetry collection, "Plaintive Music," deserves, and requires, close and attentive reading. In these 47 poems, Domen favors short lines and keen attention to both sound and image.   

The collection begins with the poet's observations of nature, primarily celebratory poems with lush descriptions and musical language, including poetic tributes to  artist Charles Burchfield (pp. 1-6) and to Domen's father (pp.8-9). 

Human life is often considered through the lens of woods and birds, gray slate and rain, naturally occurring elements that lead to memories of family and place ("Wooden Ties" p. 10 and "Cutting Wood with my Son" p. 14). Domen's images, which are rich and exact, often reflect his physician training and experiences.  Consider these lines from "Woodturner" (p. 12).  The poet is working a lathe, shaping a birch log into a bowl until "the white / grain streaked blue and brown / with minerals nursed from the earth / glows like the veined translucent / skin of a newborn child."

The middle section of "Plaintive Music" includes poems that examine the many facets of the poet's experiences as a physician, beginning with the wonderful "Studying Medicine in Guadalajara, Mexico: 1971-1975" (pp 17-22). 

To read this powerful poem is to be there, driving to "the Queen City" five thousand feet high / in the Valley of Altemajac south / of the Tropic of Cancer" (p. 18), witnessing the lack of sophisticated cures ("No oxygen or drugs or IVs / and no machines to shock the heart / back to life only bare hands / pushed on his chest . . . " p. 19), "going door to door / to find the sick" (p. 20), and dissecting corpses pulled from a formaldehyde tank ("and each day scraped / and peeled away more flesh until nothing / was left to dissect and only / the bones remained" p. 22).  

This poem is followed by a long poetic prose statement, "Belated Letter to a Mother," in which the narrator recalls a night thirty years ago when, as an internal medicine resident, he was called upon to care for a battered child and give witness to the complexities of human frailty. Embedded in the letter are a few lines that perfectly describe the role of the caregiver: "That sometimes all we can do is what the poet does-- "to see, to hear, to feel-- and more times than not, it is enough" (p. 25).  

Poems on pages 17-36 especially gain power from the poet-physician's point of view.  Final poems move again into the realm of nature, but here the themes are darker, reflecting the wages of learning to heal:

"I studied in medical school to learn / what actually lies under thick / layers of skin and how the heart / hides behind the breastplate" ("Armadillo" p. 33).  

This collection comes full circle, beginning in "a time when flowers / had thoughts and the hills heard / turtles speak of the brilliant colors / of things growing" ("Beaver Creek" p. 1) and ending in winter, the darkest season, but not without its own beauty: "Snow begins to fall once again / on this windswept knoll along / the Lehigh River where the black // bony trees and dark gravestones / dot the slope of Nisky Hill" ("On Buying Our Gravesite" p. 61).

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Second Bloom

Krugovoy Silver, Anya

Last Updated: Dec-05-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

These poems are not a cancer chronicle, but the experience of living with cancer is threaded through them in a way that illustrates beautifully how awareness of illness may permeate daily life, but is foregrounded and backgrounded, reshaped and revisited in shifting ways as it takes its course.  They encompass moments in family life, moments in the hospital, moments of spiritual longing and awareness of loss.  Together they offer a record of accommodation, acclimation, and complex acceptance.

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Annotated by:
Natter, Michael

Primary Category: Literature / Nonfiction

Genre: Graphic Novel

Summary:

Taking Turns, Stories from HIV/AIDS Care Unit 371, is a graphic novel written and illustrated by nurse and artist, MK Czerwiec. In it, she details what it was like to be a nurse during the AIDs epidemic in Chicago in the 1990s. The book, however, is much more than a story about AIDS care during that time. Czerweic tackles patient/provider relationships, boundaries, hospital struggles, the role of art in medicine and healing, but most profoundly: death and dying. 

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Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

This Side of Doctoring is an anthology published in 2002 about the experiences of women in medicine. While the essays span multiple centuries, most are from the past 50 years. They reflect on a multitude of stages in the authors’ personal and professional lives. In 344 pages divided into twelve sections, including "Early Pioneers," "Life in the Trenches," and "Mothering and Doctoring," the 146 authors recount - in excerpts from published memoirs, previously published and unpublished essays, poems and other writings, many of them composed solely for this collection - what it was then and what it was in 2002 to be a woman becoming a doctor in the U.S.. All but a handful of the authors are physicians or surgeons. There is a heavy representation from institutions on both coasts, especially the Northeast. Four men were invited to reflect on being married to physician wives. There is one anonymous essay concerning sexual harassment and a final essay from a mother and daughter, both physicians.   Beginning with the first American female physicians in the mid-19th century, like historic ground-breakers Elizabeth Blackwell and Mary Putnam Jacobi, the anthology proceeds through the phases of medical school, residency, early and mid-careers, up to reflections from older physicians on a life spent in medicine. Many of the authors have names well known in the medical humanities, including Marcia Angell, Leon Eisenberg, Perri Klass, Danielle Ofri, Audrey Shafer, and Marjorie Spurrier Sirridge, to mention a few. 

The essays and poems and letters have, as a partial listing, the following subjects: family influences in becoming a physician; professional friendships; marriage; children and their impact on a woman’s career in medicine; the decision not to have children; ill family members; illness as a physician; establishing one's sexuality as a physician; struggles with male physicians and their egos; mentors, both female and male; memorable patients (often terminal or dying); the life of a wife-physician, or mother-physician; the guilt and sacrifice that accompany such a dual life; the importance - and easy loss - of personal time or what internist Catherine Chang calls “self-care” (page 334).
  The anthology also touches on how women have changed the practice of medicine in various ways, prompted by the growing realization, as family practice physician Alison Moll puts it, "that I didn't have to practice in the traditional way" (page 185)  The authors write about the wisdom of setting limits; training or working part-time or sharing a position with another woman; and the constant face-off with decisions, especially those not normally confronting an American man becoming a doctor. 
One conclusion is evident before the reader is halfway through the book: there are many approaches to becoming a fulfilled female physician including finding one’s identity in the field.  Implicit in most of the essays and writings is the lament from obstetrician-gynecologist Gayle Shore Mayer: "Where is the self ? There are pieces of me everywhere", (page 275) recalling a similar cry from Virginia Woolf's Orlando, another essentially female soul trying to find what Richard Selzer has called "The Exact Location of the Soul".
 Several authors discover that female physicians have unique gifts to offer their patients. As internist Rebekah Wang-Cheng writes, “I am a better physician because I am a mother, and I know because of my experiences as a physician that I am a better mother.” (page 151) 

There are sections at the end devoted to a glossary for the lay reader, resources for women (as of 2002), and generous notes about the contributors (which section also serves as a useful index of each's contributions).

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Another Country

Schoeman, Karel

Last Updated: Oct-24-2017
Annotated by:
Galbo, Sebastian

Primary Category: Literature / Fiction

Genre: Novel

Summary:

In Karel Schoeman’s novel, Another Country, Versluis, an affluent and educated Dutchman diagnosed with tuberculosis, immigrates to Bloemfontein, South Africa, to convalesce. Bloemfontein in the 1870s, located within the remote interior of the Free State, is little more than a dusty outpost populated by first- and second-generation German, Dutch, and English inhabitants. As the novel quietly unfolds, Versluis’s tenuous recovery, and subsequent regression, are punctuated by his observations of the community’s struggle to both preserve and break from European culture to form a distinct South African identity.   Whereas Versluis cherishes his familiar Dutch customs and courtesies, here, in Bloemfontein, he must adapt to the community’s irregularities and gaucheries. Nevertheless, he is regularly astonished by the town’s culture of insouciance—a lack of punctuality, etiquette, and municipal orderliness; its sometimes frowzy fashions; disregard for conservatism; and ease among poverty, violence, and isolation. His observations, however, are not the mordancies of a snobbish European, but a wrestling with his sense of profound alienation as a precariously ill man living abroad in a strange country.   Informed that his case is terminal, Versluis resigns himself to the inescapable state of his life. With fresh sensibility, he embraces life in Bloemfontein, becoming more receptive to its people and daily life. Particularly, for Versluis, the veld—with its rocks, dust, succulents, and solitude—takes on a potent and portentous symbolism, as an immutable and implacable presence (and emptiness), much akin to the illness that is killing him. Within this ponderous flux of change, of a gradually evolving Africa, Versluis peacefully comes to terms with his imminent death.

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