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

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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Andrew Schulman is a New York guitarist with a long history of playing in hotels, restaurants, small groups, and formal concerts—even in Carnegie Hall, the White House, and Royal Albert Hall. His memoir describes his experience as a patient in a Surgical Intensive Care Unit (SICU), where he was briefly clinically dead. Six months later he began a part-time career as a guitarist playing for patients and staff in that very same SICU. 
           
In July of 2009, Schulman underwent surgery for a pancreatic tumor (luckily benign) but crashed afterward. He suffered cardiac arrest and shortage of blood to his brain for 17 minutes. Doctors induced a week-long medical coma, but his condition worsened. His wife asked if he could hear music; he had brought a prepared iPod. When the opening chorus of Bach’s St. Matthew Passion played in his earbud, the computer monitor showed that his vital signs stabilized, and he survived. The nurses called it a miracle.
           

Convinced of music’s healing power, Schulman proposed that he return and play for patients and staff. He describes various patients for whom he played over the next six years (with permission or changes of name and details). He explains his approach to choosing music, pacing it, and feeling hunches for what is right for a given patient. He interviews experts and reads scientific papers in order to explain how the brain processes music. Music reminds patients of their earlier, healthier lives; it coordinates right and left brain; it brings calmness and peace.
 
Imaging studies show that music (and emotionally charged literature) stimulate the brain regions associated with reward—similar to euphoria, sex, and use of addictive drugs.

Schulman knew some 300 pieces from a wide range of music, but his illness damaged his memory so that he could recall only six of them. That meant his work relied on sheet music. Near the end of the book, however, his “rehab” of playing three times a week, concentrating on the music, and intending to help others—all this allowed his brain to heal, and he began to memorize as before. Schulman consults with experts and undergoes two brain scans and other studies that show the neuroplasticity of this brain that allowed it to rewire and memorize once again.

Although Music Therapy is discussed as an allied profession, Schulman is considered, rather, as a “medical musician” playing only in the SICU. Provision of music, whether by Music Therapist or “medical musician,” is, however, usually not covered by insurance and therefore not available to patients.           

There’s a six-page Afterword by Dr. Marvin A. McMillen, who Schulman describes as “central” to his survival. McMillen writes that being both a critical care doctor and a critical care patient himself (polycystic kidney disease), he knows the importance of emotional support to patients, healing environments, and the power of music. McMillen was also pivotal in allowing Schulman to play in the SICU.

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Is It All in Your Head?

O'Sullivan, Suzanne

Last Updated: Mar-17-2017
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Suzanne O’Sullivan is a neurologist in the British National Health Service. She has a particular interest in psychosomatic illnesses, and in this book, she covers what she has learned about them. O’Sullivan provides these learnings mostly from clinical experience rather than as findings from empiric studies on psychosomatic illnesses.   

Each chapter is built around one or more case studies that focus on particular psychosomatic illnesses, and include historical perspectives and various theories that might explain why they occur.  

The cases O’Sullivan uses presented themselves as seizures, paralysis, urinary tract troubles, generalized and localized pain, gastrointestinal problems, fatigue, blindness, and dystonia. Patients sometimes came to her with pre-determined diagnoses such as epilepsy, Lyme disease, chronic fatigue syndrome, myalgic encephalomyelitis, and fibromyalgia among others. O’Sullivan is emphatic that psychosomatic illnesses are not just any presentation of illness that cannot be linked to a pathological basis. Psychosomatic illnesses arise from “the subconscious mind [that] reproduces symptoms that make sense to the individual’s understanding of how a disease behaves.” (p. 83) Illness presentations that are feigned or self-inflicted (e.g., Munchausen’s syndrome) are not psychosomatic illnesses in O’Sullivan’s view.
 

Each chapter delves into some particular aspect of psychosomatic illness relevant to the case study. These include history (e.g., role of the uterus in hysteria), mechanisms at work (e.g., conversion reactions, dissociation), triggers (e.g., stress, loss, personality traits), factors (e.g., previous illness experiences), illness behavior disorders (e.g., associating illness to benign physical sensations), and the higher incidence seen among females. Though O’Sullivan teases out various characteristics and workings of psychosomatic illnesses, she admits that they remain vexing to clinicians because, “almost any function of the body can be affected in almost any way.” (p. 170)

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Annotated by:
Clark, Mark

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

Wandering in Darkness is an intricate philosophical defense for the problem of suffering as it is presented by medieval philosopher Thomas Aquinas.The work addresses the philosophical / theological problem of evil, which might be expressed as follows:  if one posits an all-good, all-powerful God as creator, yet suffering exists in the world, then (a) God must be evil, since he created it; (b) God is less than all-powerful, since suffering came to be in his creation, and he could not stop it; (c) God is evil and weak, since suffering came to be in his creation, and he did not want to stop it; or (d) suffering is an illusion.  No alternative is, of course, very satisfying. In her book,   Eleanore Stump augments Thomas Aquinas’s theodicy by reflecting upon what she calls “the desires of the heart,” a dimension of human experience that Aquinas leaves largely untreated in his consideration.  Stump explores this dimension by breathtaking exegeses of Biblical narratives as narratives: the stories of Job, Samson, Abraham, and Mary of Bethany.  “Understood in the contexts of [these] narratives,” Stump argues, “Aquinas’s theodicy explains in a consistent and cogent way why God would allow suffering" (22).

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T.B., Harlem

Neel, Alice

Last Updated: Mar-01-2017
Annotated by:
Winkler, Mary

Primary Category: Visual Arts / Painting/Drawing

Genre: Painting

Summary:

A young man lies propped up on pillows, his hand pointing toward a bandaged area on his side. The composition is a powerful diagonal sweep, the body in the bed forming a triangle. At its apex, the head of the man with its mass of dark hair is haloed in the white of the pillow. His dark, glistening eyes arrest the viewer, demanding attention and implicitly evoking sympathy. Neel’s expressionism is displayed in the elongated curvature of the neck, the ears splayed out from the head to rest on the pillow, and in the eloquent gesture toward the bandage.

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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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Diabetes

Dickey, James

Last Updated: Feb-01-2017
Annotated by:
Coulehan, Jack

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

In the first part of this poem ("Sugar"), Dickey gives a wonderful series of images of diabetic symptoms: "I thirsted like a prince," "my belly going round with self- / made night-water," "having a tongue / of flame . . . . " The doctor preaches insulin and moderation. The poet tries to comply. He seems to accept this new life, "A livable death at last."In the poem's second part ("Under Buzzards"), the poet and his "companion" climb to a point on Hogback Ridge where they see buzzards circling. Seeing the birds of death, he reflects on his life and illness. Is all this medicine and moderation worthwhile? What will they accomplish? Regarding the body, the poet writes, "For its medical books is not / Everything: everything is how / Much glory is in it . . . . " In the end he takes "a long drink of beer."

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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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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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