Showing 1 - 10 of 821 annotations tagged with the keyword "Caregivers"

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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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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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The subtitle is accurate enough: “A Memoir of a Family and Culture in Crisis,” although the author J.D. Vance is, in fact, the focal point of view throughout, from his childhood to his success as an adult. Few young people made it out of the hills to enjoy stable and successful lives, but J.D. was one of them, earning a degree at Ohio State University, then a law degree at Yale. While recounting his life, he also describes his relatives and neighbors, and he interprets the many dilemmas of his hillbilly culture. 
 
Vance was born in 1984 and grew up in Jackson, Kentucky, a poor town following the collapse of coal mining. His family was beset with poverty, alcoholism, mental instability, and more. His mother had nine miscarriages and suffered from addictions; she had multiple husbands. The culture around him suffered from domestic violence, drug abuse, hoarding, unemployment, honor defended by fists, knives, or guns, as well as bad financial habits, bad diets, obesity, lack of exercise, sugary drinks, dental problems, and what he calls “emotional poverty.”  There was welfare abuse and, in general “a chaotic life.”  He credits his grandparents, other relatives, various teachers and professors for supporting him, guiding him, and comforting him when he was hurt, angry, and/or confused.
 

Like many other hillbillies, J.D. moved some hundred miles north into southern Ohio, where steel companies provided jobs—that is, until they closed, like many other employers in the Rust Belt. There also, hillbillies were left without income and social problems increased. Stores and restaurants closed. Payday lenders and cash-for-gold shops took their place. Drug dealers and users took over empty houses.  

After high school, Vance joined the Marines. He credits the military for teaching him discipline, persistence, and for developing his self-respect. For his success at Yale, he thanks his professors, his girlfriend (later wife), and classmates for helping him understand customs of New England society. One example: he leaves a banquet to call his girlfriend; she instructs him on how to handle the nine pieces of unfamiliar silverware surrounding his plate.  

The last three chapters (11, 12, 13) and the conclusion analyze his experience on more conceptual terms, including the “social capital” prized by the the New England world, social instability of the culture he was raised in, and “adverse childhood experiences” (or ACEs), the psychologists’ phrase for the damaging events children experience in a culture of poverty, violence, and limited futures. He writes that governmental child services have policies that don’t understand the important roles of aunts, uncles, and grandparents in subcultures that rely on extended families.  Indeed, faithful to his mother, he, as an adult, provides specific help to her. 


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The Wilderness

Harvey, Samantha

Last Updated: Dec-13-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Jake Jameson is an architect who came of age in immediate post World War II London. He grew up in “the wilderness” of the English moors and peat bogs far from London. He returns to this wilderness with a wife and an infant son, and to where his mother, a childhood friend, and many memories still live. We read about his successful career, his Jewish mother and her flight from her native Austria, his marriage to Helen and her unexpected death after about 30 years of marriage, his infidelities, his son’s incarceration in a prison he designed, his daughter’s death as a young child, and how eventually the wilderness he lived in moved from the moors to his brain. We don’t learn all of this easily because it comes in one form through Jake’s damaged memory and in another form through the tellings of more reliable witnesses. We are left in our own confused state about certain parts of story until the corrections and clarifications come later in the book. For example, we can go far into the novel thinking that Helen could have died from falling from a cherry tree until we learn near the very end that she died from a stroke, probably.

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The Wound Dresser

Coulehan, Jack

Last Updated: Nov-23-2016
Annotated by:
Shafer, Audrey

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The collection is prefaced and named for a poem by Walt Whitman, The Wound Dresser, annotated in this database by Jack Coulehan. In “On Reading Walt Whitman’s ‘The Wound Dresser’” Coulehan sees Whitman as a nurse tending the Civil War wounded, and, while using some of the words and language of Whitman’s poem, imagines himself moving forward in that created space of caring for patients: “You remain / tinkering at your soldier’s side, as I step / to the next cot and the cot after that.” (p. ix) The poem introduces us to all the ‘cots’ of the book – where we step from patient to patient, through history and geography, and through the journey of medical training.   The book is comprised of 4 sections without overt explanation, although there are 4 pages of Notes at the end of the book with information about select individual poems. In general, the themes of the sections can be described as: 1.) clinical care of individual patients and medical training; 2.) reflections on historical medical cases, reported anecdotes or past literary references; 3.) meditations on geographically distinct episodes – either places of travel or news items; and 4.) family memoir, personal history and the passage of time.   Many of the poems have been previously published and a few are revised from an earlier chapbook. Notable among the latter is “McGonigle’s Foot” (pp 42-3) from section 2, wherein an event in Philadelphia, 1862 – well after the successful public demonstration of anesthesia was reported and the practice widely disseminated, a drunk Irishman was deemed unworthy of receiving an anesthetic. Although it is easy to look back and critique past prejudices, Coulehan’s poem teaches us to examine current prejudices, bias and discrimination in the provision of healthcare choices, pain relief and access to care.   There are many gems in these 72 poems. Coulehan has an acute sensibility about the variety of human conditions he has the privilege to encounter in medical training and clinical practice. However, one of the standouts for me was “Cesium 137” based on a news report of children finding an abandoned radiotherapy source (cesium) in Goiania Brazil, playing with the glowing find and suffering acute radiation poisoning. He writes: “the cairn of their small lives / burst open…their bodies vacillate and weaken / hour by hour, consumed by innocence / and radiant desire.” (p. 68).   Following another poem inspired by Whitman, Coulehan concludes the collection with a sonnet “Retrospective.” He chronicles a 40-year career along with physical aging, memories of medical training “etched in myelin,” and the search for connection across that span of career including, “those he hurt, the woman / he killed with morphine, more than a few he saved.” Ultimately, he relies on hope with fitting understatement: “His ally, hope, will have to do.” (p. 97)

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This monograph is an important contribution—along with the Health Humanities Reader (2014)—to the burgeoning field of health humanities, a new academic field and the presumed replacement for (and expansion of) medical humanities. While the medical humanities included philosophy, literature, religion, and history, health humanities includes many more disciplines, and the creative arts.
This book is dense with theory and abstraction, but it imaginatively and intelligently promotes the notion that health is a larger and more useful concept than disease, which dominates and limits standard medicine. 

Five authors are listed for the book as a whole; none are attributed specifically to any of the eight chapters.
 
The first chapter “Health Humanities” promotes health humanities as an expansion of medical humanities to include more people (including unpaid caregivers and patients), social and national well-being, and the arts, such as dance, music, and visual art. We need to consider wider ranges of meaning, agency, and patients’ varying life stories. Unpaid caregivers have been neglected, even though “the majority of healthcare as it is practiced, is nonmedical” (p. 13). Medicine per se has been too science-based and too disease oriented, but critical theory and the arts can be “enabler[s] of health and well-being” (p. 19) with many applications to hospitals, clinics, homes, and neighborhoods.

“Anthropology and the Study of Culture” describes a wide range of inquiry, both worldwide and throughout human time, including rituals, conceptions of disease, health, death, and impacts for patients. Some cultures believe in spirit possession. The Chinese have worked with qi (life energy) for millennia. Cultural studies look at popular media, spiritual perspectives, also local and subcultural values.
 
“Applied Literature” discusses pathographies, including mental illness (for example, self-harm); it reviews concepts from Rita Charon and describes how reading groups can promote well-being. Literature expands our understanding of humans well beyond the biomedical gaze. Closely related, “Narrative and Applied Linguistics” reviews notions from Osler, Barthes, Bruner, Propp, Frank, and others. Patients want, beyond technical expertise, healthcare personnel who will help them co-create an enabling narrative. New techniques in linguistics include analysis of a corpus of usage, for example, teen language, thereby gaining approaches to young patients who cut themselves.

At 23 pages, the longest chapter is “Performing Arts and the Aesthetics of Health.” It posits that all arts are uniquely human because they are relational, aesthetic, and temporal (with time in a kairos sense, not just chronos). The arts fit into health practices, which also share the same three qualities. The arts promote coherence, agency, communication, expression, and social wellbeing, traits that are described specifically in music, dance, and drama. Similarly, the next chapter “Visual Art and Transformation,” promotes this particular art, whether elitist or popular, as communicative and transformative. The making of art can be healing. 

“Practice Based Evidence: Delivering Humanities into Healthcare” argues against Evidence Based Practice and its limitations. Instead of Randomized Controlled Trials, smaller, more qualitative studies may be more accurate and useful. Practice Based Evidence (and feminist and postmodern approaches) all create wider and deeper notions of validity.

“Creative Practice as Mutual Recovery” suggests that caregivers, whether professional or lay, also find healing as they deliver care.

In “Concluding Remarks” we read, again, that  “the majority of health care and the generation of health and well-being is non-medical” (p. 153). Medicine and medical humanities are “too narrow a bandwidth,” but health humanities can support all caregivers, various institutions (including schools), self-care, and complementary medicine.   

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