Showing 1 - 10 of 823 annotations tagged with the keyword "Caregivers"

Summary:

This engaging memoir describes Pearson's medical training at the University of Texas Medical Branch (UTMB) on Galveston Island from 2009 to 2016. During these years her personal values become clear, and she finds fault in her training, in medicine as practiced in Texas, and even in her own errors in treating patients.

Having left a graduate writing program, Pearson took a "postbac," a year of pre-med courses in Portland, Oregon. She interviewed at medical schools "all over the country" and writes satirically about them; she concludes "nothing out of Texas felt quite right," having lived there and done her undergraduate work at University of Texas at Austin. She's a Spanish speaker with a working-class background. When her classmates provide the annual “white-trash”-themed party, she wonders, “do I go as myself?” (p. 21).

Pearson's education continues on three tracks: the formal UTMB courses in medicine, a simultaneous Ph.D. program at the Institute for the Medical Humanities at the University of Texas, and her volunteer work at the St. Vincent's Student Run Free Clinic. The Ph.D. program is off-stage, not mentioned, but the St. Vincent's Clinic becomes pivotal to her development as a doctor and a moral person.

As for medical school, she finds the relentless "truths of biochemistry and anatomy" so reductive that the suffering of people and surrounding politics seem "not to matter at all" (p. 70). Among the politics are: the lack of safety nets for poor people, the use of uninsured (including prisoners) for students to practice on, failures to extend Medicare, pollution (notably from the oil industry), losses of charitable care, and income disparities that include crushing poverty for many. Something of a rebel, she writes that medical school "felt like junior high" (p. 44). She does enjoy the "clinical encounters" with real patients.

St. Vincent's, by contrast, was “a relief.” Her pages sparkle with her conversation with clinic patients, some homeless, all poor, and all suffering. She reports--confesses, she even says--her errors that had consequences for patients. She writes that errors are an unavoidable part of medical education, but that it's wrong that they should routinely happen to the poorest members of society.  

Chapter 8 discusses depression, which she felt after the second year. She writes about high rates of suicide among medical students and doctors; indeed a close friend killed himself during the "post-doc" year. Because some states require doctors to report psychiatric care, some doctors avoid such care. This consequence “drives a suicide-prone population away from the help we may need" (p.92).

The last two years are the rotations through specialties: surgery, dermatology, trauma, rural medicine, neurology, internal medicine, and so on. These are clearly and insightfully described. In one case (internal medicine), she allows the reader to see the irony of a doctor providing hair removal by laser, diet foods, and Botox treatment for wrinkles, “a pure luxury transaction” (p. 183).

Pearson describes the storms, hurricanes, and floods that hit Galveston Island, also the pollution from the oil industry that causes a “cancer belt” along the Louisiana and Mississippi coasts (p. 104).
At last she finishes her program, understanding that her identity is simultaneously a person, a physician, and a writer (p. 248). 

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This Way Madness Lies

Jay, Mike

Last Updated: Oct-17-2017
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction — Secondary Category: Visual Arts / Visual Arts

Genre: History

Summary:

This Way Madness Lies was published in partnership with London’s Wellcome Collection for the exhibition “Bedlam: The Asylum and Beyond,” which ran from September 2016 - January 2017 and was curated by Mike Jay and Bárbara Rodriguez Muñoz. It is a book that was meant to accompany the exhibition, yet which, by virtue of the substantial text and reproductions, can stand alone.  

The book traces the history of treatment of the mentally ill by following the colorful story of Bethlem Royal Hospital from its antecedents in the Middle Ages up to the present.  Its sway over the public imagination evidenced by its appearance in everything from Jacobean Drama to “Sweeney Todd,” Bedlam has truly attained archetypal status.  An archetype, yet also a real functioning hospital.  Sections of the book entitled “Madhouse,” Lunatic Asylum,” and “Mental Hospital” chronicle the facilities designed respectively during the 17th/18th, 19th, and 20th centuries, and explain how they reflect changing notions of madness in each era. 
 

The first structure was visually grand but lacked a foundation, a metaphor for what was going on inside: “a façade of care concealing a black hole of neglect” (p. 39).  It became a tourist attraction along the lines of the zoo, with nothing preventing the public from gawking at and taunting the inmates.  While its replacement gave the impression of being more functional, conditions proved equally squalid.  On the other hand, 19th-century Europe and the United States saw asylum reforms, as well as the medicalization of madness as an “illness” and the ascent of psychiatry as a branch of medicine.  Finally, in 1930, the buildings still in use in Monks Orchard, a suburb of London, were constructed.


By contrast, we learn about treatments elsewhere, most notably Geel, Belgium.  There, for centuries, as an alternative to being warehoused in psychiatric hospitals, the mentally ill have been successfully boarding with townspeople. 
 

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How to Visit a Healer

Brown, Jeanette

Last Updated: Sep-08-2017
Annotated by:
Davis, Cortney

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

In this wonderful short story, author Jeanette Brown describes a woman’s first visit to an alternative medicine healer. The woman has a persistent cough. Unhappy with the "five seconds per visit your doctor lavishes on you after your two-hour wait in his sterile lobby," she has taken her yoga instructor’s advice and made an appointment with a tall, olive-skinned man whose voice is "low and soothing" and whose manner is slow, relaxed, and personal.The woman, whom the healer diagnoses as "the roadrunner, a busy fidgety type," alternates between interest, skepticism and dismay. She cracks jokes; he doesn’t laugh. He recommends diet, exercise, no caffeine, and colon cleansing. She mentally rolls her eyes until, his hands massaging her foot, she feels her stomach lurch, a twinge in her armpit and begins to think of her body as "a human pinball machine." Whenever her self-defensive, rational, traditional beliefs almost propel her off the exam table and into her clothes, the healer "nails" her, reading her personality and her lifestyle exactly.Well into the visit, she realizes she hasn’t coughed once. Then, when she’s the most relaxed, incense wafting, his hands kneading all tensions from her back, her mind registering "this is bliss," her esophagus becomes blocked. Sitting up, she coughs, and the healer confronts her. "You have something to say," he insists, and she counters with "You expect me to believe all this mumbo-jumbo?" He tells her she swallows her feelings, and when she coughs again a "feather? A butterfly?" escapes from her mouth and disappears.When the healer pats her back and asks her to cough once more, she can’t. Taking her hands, he declares her "cured." At the story’s end, still not quite able to admit that this strange physician has helped her, yet knowing that he has, the woman struggles to count out his fifty dollar fee, finally dropping a handful of bills onto his bench, "hoping he won’t be offended by a tip."

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Annotated by:
Aull, Felice

Primary Category: Literature / Literature

Genre: Anthology (Mixed Genres)

Summary:

This anthology of poems, short stories, and essays derives from the literary magazine, Bellevue Literary Review, which began publication in 2001. The editor of the magazine and her staff have selected what they consider to be the best literary pieces from the Review's first 6-7 years of publication. Like its parent magazine, the anthology focuses on work that addresses the illness experience, health, healing, and the experiences of health care professionals and other caregivers. The anthology is divided into three parts, each of which has several subsections. Part I, "Initiation," looks at patients' introduction to illness and introduction of doctors to medical education and medical practice. Part II, "Conflict: Grappling with Illness," divides into sections on disability, coping, madness, connections, and family. Part III: "Denouement," addresses mortality, death, loss, and aftermath.

Among the 81 authors represented, seven are physicians, and another half dozen or so are in other caregiving professions such as nursing, social work, counseling. Some writers are well recognized in the literary world (for example James Tate, Amy Hempel, Alicia Ostriker, Rachel Hadas, Sharon Olds, Philip Levine, Floyd Skloot, Julia Alvarez, David Lehman, Rafael Campo, and Abraham Verghese -- the latter two are physicians); most of the less well-known others have published in a variety of venues.

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The Story of Beautiful Girl

Simon, Rachel

Last Updated: Aug-07-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

On a stormy night in 1968 a retired, widowed schoolteacher in rural Pennsylvania opens her door to find a young couple, she white, he African American, wrapped in blankets, drenched, and silent.  Letting them in changes her life.  They have escaped together from a nearby mental institution most locals simply call "The School."  The young woman has recently given birth.  When Martha lets them in, her life changes forever.   Supervisors from "the School" show up at the door, the young man escapes, and the young woman, memorably beautiful, is taken back into custody.  The only words she is able to speak out of what we learn has been a years-long silence are "Hide her."  Thus she leaves her newborn baby to be raised by a stranger.  The remaining chapters span more than forty years in the stories of these people, linked by fate and love and the brutalities of an unreformed system that incarcerated, neglected, and not infrequently abused people who were often misdiagnosed.  Homan, the young man who loved Lynnie, the beautiful girl from the institution, was deaf, not retarded.  Lynnie was simply "slow," but a gifted artist who recorded many of the events of her life in drawings she shared only with the one attendant who valued and loved her.  Though her pregnancy resulted from being raped by a staff member, the deaf man longs to protect her and care for the baby.  Years separate them; Homan eventually learns signing; Lynnie's sister befriends her and an exposé results in the closure of the institution.  Over those years Lynnie and Homan witness much cultural change in treatment of people like them who were once systematically excluded.  They find social identities that once would have been entirely unavailable to them.  And eventually, after literal and figurative journeys of discovery, they rediscover each other.   

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Volck’s memoir describes his medical practice and learning in a variety of settings (Cleveland, Baltimore, Cincinnati), but, more importantly, in non-metropolitan places, such as Tuba City on the Navajo Reservation in Arizona and rural clinics in Honduras. He suggests that his knowledge of medicine has largely come as he has practiced it and not from his formal education. Further, he believes that best medical practice is not primarily high-tech, urban, or industrial. Each of the 15 chapters has a title—a topic, a person, or a theme—but also one or more locations specified. For example, we have “Chapter One, A Wedding, Navajo Nation, Northern Arizona,” suggesting the importance of culture and locale. Further, the chapters include personal associations from several realms beyond the topic and place as Volck seeks to understand medicine, healthcare, and how we live in the world.           

Of the first seven chapters, five are set in Navajo land, where Volck is an outsider by his cultural heritage and his profession, a doctor with a pediatrics specialty. From time to time he reflects on his training, the English verb “to attend,” and specific patients, such as two-year-old Alice in Tuba City and eight-year-old Brian in Cleveland. Both children died while in his care. Working on the front-line of medicine, he considers the weaknesses of our modern attitudes toward death and our wishes for control. He also wrestles with personal lifestyle issues of balancing medicine, family, and an urge to write.
 
           
Other chapters describe restlessness in his profession, the growth of his family (including the adoption of a Guatemalan baby girl), hiking in the Grand Canyon, camping in the rain, and a retreat with Benedictine monks. Chapter 11 “Embodying the Word” discusses literature and medicine, lectio divina (a Benedictine reading practice), and the need to listen carefully to patients’ stories.
           
The final chapter returns to Cincinnati, Honduras, and Tuba City. Volck has found more projects in the Navajo Nation, including a youth service project from his church. With permission, he conducts interviews and plans a book on the Navajo, “drawing on cultural history, anthropology, history, medicine, and politics” (p. 201).

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Admission, Children's Unit

Deppe, Theodore

Last Updated: Apr-11-2017
Annotated by:
Clark, Mark

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The speaker of this poem is a nurse who is recalling and attempting to come to terms with a disturbing clinical encounter she’d had the week before.  (I should note at the outset that there’s no indication in the poem as to whether the nurse is male or female.  I choose to think of her as female).  What had happened is that a mother had brought her five-year-old son in for treatment, and the nurse’s exam revealed that the child had second- and third-degree burns on his torso—in the shape of a cross.  The mother, weeping, confessed that her boyfriend had, as a punishment, applied a cigarette to the child’s body—while the mother had held her son.  Seeing the mother’s tears, the nurse considered offering the woman some Kleenex, but could not bring herself to do so.  The child retrieved the box of Kleenex, then clung to his mother’s skirt, and glowered at the nurse.  Then the nurse had participated with three others in prying the boy away from his mother.  In the present of the poem, a week after the encounter, the nurse attempts to deal with the guilt and shame she feels in her failure of professional decorum and compassion—at having failed to rise above her moral judgment against the mother and offer the woman basic human kindness and respect.  In confronting the chaos of her emotions, the nurse turns to a story she’d learned in high school: the story of St. Lawrence.  The significance of her attempt to think with this story can be overshadowed, for readers, by the intensity of the clinical encounter she recalls; but her endeavor is of at least equal significance as the encounter.



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Annotated by:
Clark, Mark

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

The Renewal of Generosity: Illness, Medicine, and How to Live contemplates the phenomenon of generosity as it is realized in the stories of physicians and patients.  For Arthur Frank, generosity is grounded in the willingness of people to give themselves over to dialogical processes of communication wherein participants best realize themselves through relational engagement: generous, dialogical communication leads to a renewal and realization of human being. Health care systems today tend to impede communicative generosity, however, and the result is a de-humanization and de-moralization of both physicians and patients.  As a remedy, Frank proposes, first, that we re-figure our conceptualization of the physician-patient relationship—from the economic or business metaphor of “provider” and “client,” we should turn to the metaphorical conceptualization of “host” and “guest,” which clearly has implications for manner of treatment and communication that occurs in the relationship.  In addition, Frank turns to and thinks with stories of physicians and stories of the ill to reflect on the ways that generosity is realized.  Drawing on the wisdom of the striking philosophical triumvirate of Marcus Aurelius (Stoicism), Mikhail Bakhtin (Dialogism), and Emmanuel Levinas  to amplify the reflections emerging from the physician and patient stories, Frank ultimately proposes “exercises” for training to generate a vivifying generosity within the medical profession, which can in turn lead to a re-humanization and re-moralization for physicians, improved care for patients, and enhanced flourishing for all.



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Summary:

INTRODUCTION            
Writing for all the co-authors, Rita Charon challenges “a reductionist, fragmented medicine that holds little regard for the singular aspects of a person’s life” and protests “social injustice of the global healthcare system” (p.1). She gives a history of narrative medicine, lists its principles, and summarizes the book’s chapters, mentioning that several come as pairs that present theory then practice. The six principles are “intersubjectivity, relationality, personhood and embodiment, action toward justice, close reading (or slow looking), and creativity” (p. 4).
The basic thesis is that healthcare can be improved by narrative medicine because “narrative competence can widen the clinical gaze to include personal and social elements of patients’ lives vital to the tasks of healing” (p. 1). 
This is a dense, theory-laden book from the group at Columbia University. The summaries below touch of some of the major points.   

PART I, INTERSUBJECTIVITY             
Ch. 1, Account of Self: Exploring Relationality Through Literature

Maura Spiegel and Danielle Spencer describe the richness of literature that allows readers to respond creatively. In clinical settings, a caregiver may similarly listen attentively and help co-construct a narrative with the patient. Literature can help us explore “the limits of rationality and positivism” (p. 29) and move from “a model of autonomy to one of relationality” (p. 34). 

Ch. 2, This is What We Do, and These Things Happen:  Literature, Experience, Emotion, and Relationality in the Classroom.

Spiegal and Spencer write that current medical education does a poor job of helping future physicians with their emotions.  Clinicians profit from a more integrated self and will listen better to patients and respond to them.      

PART II, DUALISM, PERSONHOOD, AND EMBODIMENT            
Ch. 3, Dualism and Its Discontents I:  Philosophy, Literature, and Medicine

Craig Irvine and Spencer start with three literary examples that illustrate separation of mind and body. This dualism has pervaded modern medicine, causing losses for patients and caregivers, especially when there are power imbalances between them.  The “clinical attitude” (p. 81) dehumanizes both caregivers and patients.           

Ch. 4, Dualism and Its Discontents II:  Philosophical Tinctures
Irvine and Spencer argue that both phenomenology (appreciative of embodied experience) and narrative hermeneutics (privileging reciprocal exchange of persons) help us move beyond dualism.  Theorists Edmund Pellegrino (also a physician), Richard Zaner, and Fredrik Svenaeus help us understand how caregivers and patients should relate. 

Ch. 5, Deliver Us from Certainty: Training for Narrative Ethics

Craig Irvine and Charon write that various humanistic disciplines “recognize the central role narrative plays in our lives” (p.111). There is, however, “indeterminacy” in stories that “cannot be reduced by analyzable data” (p. 113). Narrative ethics urges us to consider issues of power, access, and marginalization for both the teller and the listener. The authors review recent ethical traditions of principalism, common morality, casuistry, and virtue-based ethics. They believe that narrative ethics, emerging from clinical experience and now allied with feminist and structural justice frameworks, will provide a better approach for many reasons. “Narrative ethics is poised to integrate the literary narrative ethics and the clinical narrative ethics” (p. 125).  

PART III, IDENTITIES IN PEDAGOGY            
Ch. 6, The Politics of the Pedagogy: Cripping, Queering and Un-homing Health Humanities

Sayantani DasGupta urges attention to issues of power and privilege in classrooms, lest they “replicate the selfsame hierarchical, oppressive power dynamics of traditional medicine” (p. 137). “Cripping” and “queering” provide new perspectives on knowledge, for example the untested binaries of physician/patient, sick/well, elite/marginalized, teacher/student. Drawing on disability studies, health humanities, and queer politics, DasGupta challenges “medicalization” and the “restitution narrative” (p. 141).  

PART IV, CLOSE READING            
Ch. 7, Close Reading: The Signature Method of Narrative Medicine

Charon stresses “the accounts of self that are told and heard in the contexts of healthcare” (p. 157). Close reading, traced from I. A. Richards through reader response theorists, is “a central method” for narrative medicine (p. 164). Close reading enhances attentive listening, and both of these deepen relationality and intersubjectivity, allowing for affiliation between caregiver and patient (pp. 175-76). Such linkages aid healthy bodies and minds, even the world itself (p. 176).             

Ch. 8, A Framework for Teaching Close Reading

Charon describes how she chooses texts and provides prompts for responsive creative writing. She illustrates “the cardinal narrative features—time, space, metaphor, and voice” (p. 182) in literary works by Lucille Clifton, Henry James, Galway Kinnell, and Manual Puig.  

PART V, CREATIVITY            
Ch. 9,  Creativity: What, Why, and Where?

Nellie Hermann writes that “healthcare in particular has a vexed relationship to the notion of creativity,” in part because of issues of control (pp. 211-12); values of “evidence based” and “numbers-driven” medicine are also factors. Narrative medicine, however, “is about reawakening the creativity that lives in all of us” (p. 214).            

Ch. 10, Can Creativity Be Taught?

Hermann reports on techniques used in the College of Physicians and Surgeons at Columbia, including prompts and a Portfolio program. A “Reading Guide” helps clinical faculty (and others) respond to student writing. Responses to writing can nourish the “creative spark.”  

PART VI, QUALITATIVE WAYS OF KNOWING            
Ch. 11, From Fire Escapes to Qualitative Data: Pedagogical Urging, Embodied Research, and Narrative Medicine’s Ear of the Heart

Edgar Rivera Colón suggests that “we are all lay social scientists of one kind or another,” seeing people in action in various contexts. He affirms an “assets-based approach to public health challenges, as opposed to a deficits-based and pathology-replicating paradigm” (p. 259). We are all embodied actors in relationship to power, privilege, and social penalty. Research through interviews and participant observation show “meaning worlds” in tension with “systemic inequality and structural violence” (p. 263). 

Ch. 12, A Narrative Transformation of Health and Healthcare

Charon presents and analyzes a case study of patient Ms. N. as treated by internist Charon. They’ve been working together for decades. Charon writes up her perceptions and shares them with Ms. N. Speaking together, they “became mirrors for one another” (p. 274). Psychiatrist Marcus discusses transference and transitional space in that experience. A caregiver as witness can shift healthcare from “instrumental custodianship to intersubjective contact” (p. 288).            

Ch. 13, Clinical Contributions of Narrative Medicine

Charon describes applications of narrative medicine, all with the aim of improving healthcare. She describes techniques for interviews of patients, writing methods, and ways to improve the effectiveness of healthcare teams, as well as changes in clinical charts and other narrative descriptions of patients.

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States of Grace

Lipman, Mark; Cohen, Helen

Last Updated: Jan-24-2017
Annotated by:
Grogan, Katie

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

States of Grace follows Dr. Grace Dammann, a pioneering HIV/AIDS physician, as she navigates life following a catastrophic motor vehicle accident that leaves her severely physically disabled. Before the accident Grace was a devoted caregiver at work and at home. She was the co-founder of one of the first HIV/AIDS clinics for socioeconomically disadvantaged patients at San Francisco’s Laguna Honda Hospital, honored for her work by the Dalai Lama with a 2005 Unsung Heroes of Compassion Award. She was also the primary breadwinner and parent in her family with partner Nancy "Fu" Schroeder and adopted daughter Sabrina, born with cerebral palsy and HIV. During a routine commute across the Golden Gate Bridge in May 2008, Grace was struck head-on by a car that veered across the divide.  She miraculously survived—her mind intact, her body devastated. She endured a prolonged coma, innumerable surgeries, and a marathon of rehabilitation. The documentary picks up Grace’s story when she is finally discharged for good. She returns home to acclimate to a radically altered life, one where she is wheelchair-bound and dependent on others for simple tasks of daily living. The film captures the rippling effects of the accident on all dimensions of Grace’s life—personal, professional, psychological, spiritual, and economic—focusing especially on how Grace’s disability turns the family dynamic on its head. Fu becomes the primary caregiver to both Grace and Sabrina, Grace becomes a care-receiver, and as Grace describes “Sabrina’s position in the family [is] radically upgraded by the accident. She is so much more able-bodied than I am.” We witness her frustrations with the limitations of her paralyzed body and see her, at one point, arguing with Fu about her right to die if she continues to be so impaired. Some of Grace’s ultimate goals (to walk again, to dance again, to surf again) remain unattainable at the film's conclusion, but she sets and exceeds new ones. Grace “comes out” as a disabled person in medicine, returning to Laguna Honda Hospital as its first wheelchair-bound physician, where she is appointed Medical Director of the Pain Clinic. She resumes the caregiver role, but with an intimate knowledge of the lived experience of pain, suffering, and disability.

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