Showing 1 - 10 of 852 annotations tagged with the keyword "Patient Experience"

Summary:

Barbara Ehrenreich wants to manage her health and all that is available to address various aspects of it. She makes clear that she will do the managing and has written this book to reflect on how she plans to do it.  Ehrenreich explains why managing her health is necessary. She puts it this way:

We would all like to live longer and healthier lives; the question is how much of our lives should be devoted to this project, when we all, or at least most of us, have other, often more consequential things to do (p. xv)  

Ehrenreich doesn’t reject the project of getting longer and healthier lives per se, but she believes that what this project requires isn’t always worth the results it produces. The time and energy needed could be put towards better ends.  

Like many other critics, Ehrenreich details how Biomedicine often comes up short on outcomes for all the time, effort, and money it requires from the people it serves. She covers the familiar territories of over diagnosis and over utilization of health care products and services, and goes further to suggest that many common medical practices are more ritualistic and humiliating than evidence-based and effective.

Unlike other critics, Ehrenreich takes on other activities directed at health outside of Biomedicine. She questions whether the physical fitness industry delivers on its promises to produce healthier lives and especially whether there is a net benefit based on the time and energy required from people who take it on. She crosses to the other side of the mind-body continuum when she next aims at the “madness of mindfulness” (p. 71).  She finds the mindfulness movement offers more hubris than solutions.  

Ehrenreich worries that the combined effects of the authority of Biomedicine, the physical fitness frenzy, and the madness of mindfulness have created a social context that treats death as something that can be avoided or at least delayed. This social context thereby implies that not actively engaging in efforts to fight off death “can now be understood as a suicide” (p. 97).

Ehrenreich offers some reasons for why these efforts to improve health and prolong life do not always produce benefits that in her view are worth pursuing to the exclusion of other activities resulting in a better life (or death). Drawing on examples from cell biology and immunology, she suggests that what is at work are disease processes too complex for the human mind to apprehend completely combined with the human impulse to  simplify, which lead to practices, procedures, and prescriptions that in the best case are ineffective and in the worst case harmful.   

At the end of the book, Ehrenreich laments the efforts health care professionals, nonprofit organizations, government agencies, and commercial entities make to push older people into commitments for “successful aging.” Those making these efforts argue “aging itself is abnormal and unacceptable” (p. 164).  This commitment requires older people to spend a lot of time in clinics, gyms, and wellness classes—“The price of survival is endless toil,” is how Ehrenreich formulates it (p. 163).  She doesn’t think this price is worth what is required of people who are supposed to benefit, and advises her friends to insist “on a nonmedical death, without the torment of heroic interventions to prolong life by a few hours or days” (p. 208).

I continue to elude unnecessary medical attention and still doggedly push myself in the gym, where, if I am no longer a star, I am at least a fixture. In addition, I retain a daily regimen of stretching, some of which might qualify as yoga. Other than that, I pretty much eat what I want and indulge my vices, from butter to wine. Life is too short to forgo these pleasures, and would be far too long without them (p. 207).

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Annotated by:
Schilling, Carol

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

Genre: Memoir

Summary:

Devan Stahl’s opening essay in this unusual book explores the tension between her lived experience of being diagnosed with multiple sclerosis (MS) in her twenties and her physicians’ biomedical descriptions of it. While that tension is a familiar theme in patients’ narratives, Stahl’s approach is fresh and generously collaborative. Stahl, a bioethicist, focuses her brief narrative on her uneasy hours inside MRI machines and with clinicians who read the images. Stahl encouraged her sister, artist Darian Goldin Stahl, to transmute her physicians’ diagnostic tools into printmaker’s works, which bring personal meaning and sisterly solidarity to Devan’s experience. Devan then invited Darian and four humanities scholars to write reflective commentaries on her narrative, Darian’s images, and the commentaries themselves. The result is a richly layered, multi-vocal reflection on what Devan Stahl has accepted as “the dark gift of bodily frailty” (xxvii).

Darian Stahl’s prints were inspired by the drawings of Renaissance anatomist Andreas Vesalius that the sisters admired. Unlike their modern counterparts, the older images placed bodies in humanly built and natural environments that are rich with metaphor and theological implications. Darian’s photographic silkscreened and stone lithographic prints, some of which accompany her essay, imaginatively relocate her sister’s MRI scans in domestic spaces that suggest both Devan’s present state: her spine captured in a glass kitchen jar. And her future: a ghostly figure (actually Darian’s) at the base of the staircase that Devan will someday have trouble climbing. Making art became an act of caregiving.

The scholarly essays affirm that a single diagnosis can set in motion processes of interpretation in the context of family, community, academic discipline, and culture. But in this context, they too are expressions of caring for Devan. Literary and health humanities scholar Therese Jones writes that Stahl’s narrative “testifies to [her] hope of transcending or at least managing the alienation and incoherence of a disrupted life” (49). Literature professor Kirsten Ostherr links the Stahls’ collaborative projects with the patient empowerment movement, where creative expression offers one way to resist “the technomediated patient narrative” (71). Two of Devan Stahl’s theological studies professors contribute the remaining essays. Ellen T. Armour believes that the Stahls’ projects suggest the value of engaging the medical humanities in pastoral practice and vice versa, especially to challenge biomedicine’s claims to mastery and its “disavowal of vulnerability” (89). Jeffrey P. Bishop, who is also a physician, understands a patient’s position within the asymmetric power of medicine. Yet he also resists “the power ontology that animates so much of the West” (102). He offers instead a vision of accepting “the dark gift” of the fragility of the body, which can be both humbling and liberating (105). Viewing one of Darian’s images, he writes, “calls me out of myself” (105).

In Devan Stahl’s final reflection on her colleagues’ commentaries and her sister’s art, she concludes that sharing her experience has revealed both a “power in submission” and her responsibility to other patients (112). Her discovery leads her to a “new image” of herself and acceptance of Bishop’s observation: “Flesh calls the self into question” (115, 103).

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The Language of Kindness

Watson, Christie

Last Updated: Aug-21-2018
Annotated by:
Davis, Cortney

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Author Christie Watson begins her memoir with these words: "I didn't always want to be a nurse." Indeed, the first several pages of the introduction give witness to Christie's many interests, her career starts and stops, and a peek into what she names her "flightiness," including leaving school at age sixteen to move in with her older boyfriend and his four lodgers (page 5).  Then, still sixteen years old, she begins working with the "Spastics Society" helping to assist disabled adults.  This is the first time she sees nurses in action, and one of them offers Christie a suggestion: "You should do nursing. They give you a grant and somewhere to live" (page 6).  At age seventeen, the author enters nursing school--and like most nursing students, she is "terrified of failure." During her health screening blood draw, Christie faints; a nurse suggests she rethink her career.  But Christie persists, graduates, then spends twenty successful years in nursing.  This memoir--densely written, action packed--is her account of her work especially in the Special-Care baby Unit, in the medical ward, and in Accident and Emergency.  The author brings us as well into the cancer ward, pediatric ICU,  and the geriatric ward, painting vivid portraits of her patients and the many acts of kindness she offers them along the way.

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Taking Care of Time

Davis, Cortney

Last Updated: Aug-14-2018
Annotated by:
Kohn, Martin

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

In this volume by the esteemed nurse-poet/writer, Cortney Davis, are 43 previously published poems (some revised for this collection), assembled in 3 sections-- the middle section featuring her long poem, "Becoming the Patient," that recounts through 10 shorter poems her time "in the hospital."

The poems in the surrounding sections describe in beautiful and intimate detail her patients' lives and the call to and practice of nursing. Featured throughout are battles won and lost-- with disease, with the medical staff, and as the title-- taking care of time-- suggests, the finitude we all face. No matter the difficulties of hospital life-- whether as practitioner or patient-- its familiarity  provides grounding and comfort in these poems as, for example, heard through the speaker of "First Night at the Cheap Hotel" who tells us:

"Being here is like being sick in a hospital ward
without the lovely, muffling glove of illness.
In hospital, I would be drowsy, drugged into a calm
that accepts the metal door's clang,
the heavy footfall right outside my door.
All these, proof of life,
and there would be a nurse too, holding my wrist,
counting and nodding, only a silhouette in the dark" (p.67)

And if sometimes the experiences and images become too hard to bear, the skillful nurse-poet can, as Cortney Davis does in "On-Call: Splenectomy," "tame them on page” (p.52).

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Annotated by:
Davis, Cortney

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

When poet and writer Amy Nawrocki was nineteen years old, a college student returning home after her freshmen year, she suffered a sudden and mysterious illness.  She was transformed, in an eye-blink, from an active young woman to a bed bound and comatose patient.  "There is nothing to embellish--I got sick, I fell into a deep sleep, I woke up.  No fairy tale" (page 3).  Months of her life went missing: this brief and lovely memoir is her attempt to reconstruct those hours and those experiences.  She begins with reflections on journal entries written before her illness began, giving the reader (and herself) a persona, a personality, a living breathing young woman who already writes, who lives in her head, and who always felt "totally comfortable" in her body (page 3). Then we lose her, as she lost herself.  She re-visions the story of her months of suffering and recovering from encephalitic coma through the various medical records and family memories she gathers in order to reconstruct the missing pieces of her life. "The coma girl has detached herself from me. I have to dream her up or rely on what others saw, eye witnesses who had to detach themselves in a different way" (page 21). Coming back into life after a serious illness is a strange and often prolonged journey.  Nawrocki writes, "Waking up took as long as sleeping" (page 33).  And in this waking up time, she begins to see who she was (or how she looked to others) during those blank months. "The images still frighten me. My face was a mess; hair cropped short, puffed up without styling, ragged, like I just woke up. My eyes seemed empty but weirdly wild" (page 35). During her recovery, the author begins journaling again. "In my college notes, I focused on the art of reflection; after the illness, I wanted mainly to observe" (page 42).  And in recovery, she begins to build memories once again. She lists her recollections during weeks in rehab, and she remembers "the final trip home, a cake decorated with blue and yellow icing waiting for me" (page 45).

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The Center Cannot Hold

Wells, Kenneth

Last Updated: Jul-31-2018
Annotated by:
Glass, Guy

Primary Category: Performing Arts / Theater

Genre: Theater

Summary:

This is an opera based on Elyn R. Saks’s best-selling book The Center Cannot Hold.  Subtitled “My Journey Through Madness,” the memoir recounts the author’s struggle with schizophrenia.  Here, Saks has collaborated with composer/psychiatrist Kenneth B. Wells on the opera’s libretto.  

The librettists utilize the device of having three different singers portray Elyn.  One manifestation, the “Lady of the Charts,” represents her when psychotic.  The others are Elyn as a law student and the present day Professor Saks as a law professor.  Another dramatic device involves the use of a chorus to embody the protagonist’s schizophrenic delusions.  At the height of her paranoia, as Elyn sings Beethoven’s 5th Symphony in an effort to keep herself together, the chorus recalls the Symphony’s opening notes by singing “Elyn must die.”  

The opera opens with Elyn as Professor Saks reflecting on her childhood. Even then there were signs of the illness that, to quote a famous poem by William Butler Yeats, ensures “the center cannot hold” in Elyn’s life. During the first act, Elyn, a Yale law student, becomes psychotic in front of her friends and is hospitalized. In a Connecticut hospital she is put in restraints and treated by various mental health professionals. She imagines she hears demons threatening to kill her.  Elyn’s diagnosis and condition overwhelm her parents, who have been called by the hospital.  

In the second act, Elyn works to reintegrate her fragmented mind.  She is determined to get back to law school.  She is released from the hospital. She finds an antipsychotic medication, with fewer side effects, that she can live with. She resolves to devote her career to mental health law.  At the conclusion of the opera, Elyn anticipates graduation.  She has been instrumental in winning a class action suit against the use of restraints in psychiatric patients.  Her parents, friends and doctors proclaim their pride in her accomplishments.

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Summary:

In this remarkable anthology, 51 women and men describe their nursing school experiences, from initial fears and anxieties to increasing confidence and appreciation of the profession.  Jeanne Bryner, in her Introduction, explains how she and Cortney Davis deliberately sought a diverse group of nurse-writers, from recent nursing graduates in their twenties to seasoned veterans in their nineties.  Their collection includes different races, nationalities, social and economic classes, and education levels.  What the contributors have in common besides being nurses is that they are gifted writers able to capture in poetry or prose the transforming moments of their lives. Nursing students reading this anthology will recognize many kindred souls, struggling with the same uncertainties and apprehensions, wondering how they will ever accomplish all this, but also gaining command of the profession, relishing its special rewards, valuing patients as their ultimate teachers. All readers will understand what is so special about nursing .




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Amour

Haneke, Michael

Last Updated: Jul-10-2018
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The film enters late into the lives of Anne and Georges, a Parisian couple apparently in their 80s, apparently long married, and apparently retired music teachers. Maybe they still teach music, and maybe they still play, based on the important place a grand piano is given in the grand living room of their apartment. Their daughter, Eva, is a working musician and is married to one as well. When Georges and Anne sit together in the living room, the controls to the stereo system are never more than an arm’s length away. This family is serious about music; they love music. But, their love of music is not the love of the movie title, “Amour.” Amour is the love between Anne and Georges, and the forms this love takes. 

We first see the amour of Georges and Anne in their quotidian activities. They eat breakfast together at the small table in the cramped kitchen. They sit across from one another—or one of them lies down on the adjacent couch—and read to each other from the paper or talk about various subjects, like music. They have been doing this for decades, and probably would for decades more, but that isn’t likely, and we see why soon. 

While having their breakfast one morning, Anne becomes unresponsive to Georges while looking him straight in the eye. She eventually comes to and goes about her business as if nothing happened and doesn’t know what Georges is talking about when he describes the incident. She probably had a transient ischemic attack—a warning that a stroke may be coming—and as a result, had surgery to clear an occlusion from her carotid artery to prevent a stroke from actually occurring. However, something goes wrong in the hospital and Anne suffers a stroke there nevertheless. She returns home with some paralysis on her right side. The form of amour changes. Now the quotidian activities involve Georges administering care to Anne: he sees to her toilet, washes her hair, cuts her food, reads her newspaper articles, and helps her walk from one spot to another in the apartment when he’s not pushing her in a wheelchair. During a moment when Georges and Anne are in their customary chairs in the living room, Georges says to her, “I’m so pleased to have you back.” To which Anne responds, “Please never take me back to the hospital, promise?” 

But when Anne has another stroke, Georges takes her back to the hospital. She returns home having lost most of her ability to move at all, she can only eat or drink with considerable difficulty even with assistance, she can’t communicate verbally to any extent, and she wets herself. Georges adds feeding her and exercising her arms and legs to his established routines of bathing her, reading to her, and telling her stories. Amour has taken the shape of getting her through the days with great effort and later with help from nurses. 
 

Anne wants no more of her life despite Georges’ efforts and pleas. His daughter argues with him about the care her mother needs. The nurses can’t administer care to Anne in a way he expects. Anne does not want her daughter to see her as she is. She cries out for her own mother. She won’t take water or food. She is in pain. Georges is left with only options that test the extreme boundaries of amour.

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Summary:

Citing numerous studies that might be surprising to both lay and professional readers, Dr. Rakel makes a compelling case for the efficacy of empathic, compassionate, connective behavior in medical care.  Words, touch, body language, and open-ended questions are some of the ways caregivers communicate compassion, and they have been shown repeatedly to make significant differences in the rate of healing. The first half of the book develops the implications of these claims; the second half offers instruction and insight about how physicians and other caregivers can cultivate practices of compassion that make them better at what they do.  

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Summary:

This is an important contribution that analyzes, critiques, and aims to correct structural inequalities (racism, sexism, capitalism) that influence contemporary medicine, with particular attention to the technical influences of computers, “big data,” and underlying values of neoliberalism, such as individualism, exceptionalism, capacity, and progress through innovation.  

Introduction: Theorizing Communicative Biocapitalism
Banner writes, “biocapitalism is comprised by the new economies and industries that generate value out of parts of human bodies” (p. 12). Parts include DNA, ova, and organs, but there’s also data from medical care, where patients are reduced to their physical bodies and/or to their “digital status” in medical records, research, even personal information volunteered on the Web, all which is indicated by the term “communicative.” As an example, Banner cites the large realm of patient on-line groups that are exploited by large companies as free labor, thus reducing the voice of the patients. Approaches of narrative medicine and medical humanities have not dealt with digital health, market forces, and the implied power relationships. Perhaps the new subfield of health humanities has promise to do so, if not also captive to “the logic of the market” (p. 17).   

Ch. 1. Structural Racism and Practices of Reading in the Medical Humanities
Banner writes, “Medical racism is a product of structural and institutional racism” (p. 25). She finds that current approaches from interpretive reading are insufficient because “the field’s whiteness has contoured its hermeneutics” (p. 25). Instead of the “reading-for-empathy” model, we should read for structures of racism, sexism, privilege, as well as economic and political inequality. She illustrates such reading with texts by Junot Dìaz, Audre Lourde, and Anatole Broyard.  

Ch. 2. The Voice of the Patient in Communicative Biocapitalism
 Patients have flocked to networking websites, voluntarily posting much personal information. Banner analyzes how technocapitalists mine these sites for data to use or sell. Patients’ information, given voluntarily, amounts to free labor and, even, work-arounds for companies that avoid expensive double-blind controlled studies. Rhetoric for these sites speak misleadingly of the “patient voice,” “stakeholder,” or “story sharing” and hide the exploitation involved. The chapter is specific for websites, drugs, and drug companies.  
Banner discusses (1) the “feminized labor” involved with sites for fibromyalgia and chronic fatigue syndrome (both “contested diagnoses”) and (2), more abstractly, the medicalization of the clinical gaze on patients who participate in websites and yearn for “an imagined state of purity,” and/or “an ableist vision of norms and reparative medicine” (p. 61). Overall, the digitalized-patient voice is colonized by forces of whiteness and should be decolonized. She discusses writing by Octavia Butler and Linda Hogan, both women of color.

Ch. 3. Capacity and the Productive Subject of Digital Health
This fascinating chapter describes and critiques “digital self-tracking,” or the use of devices such as Fit-Bits that help create and maintain the so-called “Quantified Self” (or “QS”). Banner finds this fad within the tradition of the Enlightenment (Ben Franklin) so that “exact science” may “optimize” individuals by being “responsibilitized” in a “self-sovereign” way. QS users understand that “Everything is data” (p. 83). She argues that this trend emphasizes “masculine objectivity” while “disavowing debility” (p. 85). Collected data may contribute to a “worried well” status or conditions of “precarity” or “misfitting.” She writes, “QS practice remains an inscription of the self as a self-surveillor, engaged in masculinized practices of neoliberal self-management” (p. 91). She discusses the technologies of the devices Scanadu, Melon, and Scarab. She provides and interprets photos of visual arts representations by Laurie Frick, who is a “self-tracker.”  

Ch. 4. Algorithms, the Attention Economy, and the Breast Cancer Narrative
Banner discusses Google Analytics, later Alphabet, which includes Calico and Verily, which have partnered with pharmaceutical companies. Such combinations of algorithms, capitalism, and media aim to capture the public’s attention, especially online. Messaging about breast cancer becomes reductive, emphasizing medical solutions, not prevention, and it avoids discussion of causes such as environmental pollution. Some critics decry “pinkification” of breast cancer. Public stories, such as Angelina Jolie’s, emphasize individual empowerment, a “hegemonic construction of illness”’ (p. 112), and these are amplified by mass media, both print and electronic. More diverse messages would value “heterophily over homophily” (p.121).   

Ch. 5.  Against the Empathy Hypothesis
Drawing on several commentators, Banner critiques the notion of empathy as a goal for caregivers as condescending to the patient and suspect when allied with productivity and efficiency for institutions. Further, the notion of “resilience” (in a “bleed” of neoliberal rhetoric into health humanities) has been misused in applied literature, parallel to notions of self-help and self-management. Some hermeneutics still support values of “state and capitalism” and ignore writers of color. Banner discusses the work of African-American poet Claudia Rankine, some of whose work is “postlyric,” and J. M. W. Turner’s painting “The Slave Ship” that illustrates “necropolitics.”  

Conclusion
Throughout the book Banner illustrates reading “for structure” in her interpretation of texts and visual images but also in medical institutions and practices and, still further, in the enormous and pervasive world of government forms and programs, big data, computers, and beyond. She finds structures of capitalism, sexism, and neoliberalism within existing “heteropatriarchal, ableist, and racist frameworks” (p. 154) despite claims of neutrality. She urges medicine and the humanities to develop new methods. She mentions specific collectives and communities that now challenge such norms (such as Gynepunk and CureTogether), and she calls for thinkers in many disciplines to confront demeaning technology and to “engender spaces in which care is more just, and more humane” (p. 156).      

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