Showing 71 - 80 of 906 annotations tagged with the keyword "Doctor-Patient Relationship"

Summary:

The author is a pediatric oncologist who grew up in the United States, went to medical school in Israel, returned to the United States for fellowship and to begin practice, and then, feeling unsettled both personally and professionally, moved to Israel for a “dream job” opportunity and out of a deep sense of belonging.  The twelve chapters of this book catalogue Dr. Waldman’s journey along both domains, the personal and the professional.  We get to meet his patients, children drawn from the various constituent populations of Israel:  Jewish, Muslim, and Christian, religious and secular. 

Each chapter tells the story of a patient (or two), framed within a brief narrative of the history, religious aspects, and geopolitical vagaries of the city of Jerusalem as well as the nation.   The simultaneous and chronologically coherent narrative thread of the book is the author’s growth into his job, his interactions with the realities of present-day Israeli government and society, his exposure to and subsequent decision to devote himself to pediatric palliative care, and ultimately the career decisions he has to make.  

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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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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Weeks after the birth of her child, the writer receives a phone call informing her that her mother, who has gone missing, has hanged herself.  This memoir, like others written in the aftermath of similar trauma, is an effort to make some sense of the mother’s mental illness and horrifying death. Unlike many others, though, it is the story of a family system—and to some extent a medical system—bewildered by an illness that, even if it carried known diagnostic labels, was hard to treat effectively and meaningfully.  The short chapters alternate three kinds of narrative:  in some the writer addresses her mother; in some she recalls scenes from her own childhood, plagued by a range of symptoms and illness, and her gradual awareness of her gifted mother’s pathological imagination; in some she reproduces the transcript of a video production her mother narrated entitled “The Art of Misdiagnosis” about her own and her daughters’ medical histories. Threaded among memories of her early life are those of her very present life with a husband, older children, a new baby, a beloved sister and a father who has also suffered the effects of the mother’s psychosis at close range.  

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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

The Strand Magazine is a source for “unpublished works by literary masters.” The October-February (2017-2018) issue includes a Raymond Chandler short story that has never before been published. Chandler wrote crime fiction for the most part, and the stories usually involved the fictional detective Phillip Marlowe. This story, however, written between 1956 and 1958, centered on how American health care fails people who need it when they can’t pay for it or look like they can’t pay for it. 

In this story, a man who has been hit by a truck is brought into the emergency department at “General Hospital.” He arrives just before shift change and so the admitting clerk is already annoyed. The clerk checks the patient’s pockets for the required $50 deposit and finds nothing, so she could now send the patient to the county hospital, and that would be that. But, before she initiates the transfer, she asks a passing private attending physician to look at the patient. He sees that the patient is dirty, smells of alcohol, and would cost a lot to work up. Mindful of an admonition from a major donor that the “hospital is not run for charity,” the physician surmises the patient is “just drunk,” and agrees the patient should be moved to the county hospital. So off the patient goes.  

The next day, the same admitting clerk at General Hospital gets a call from the county hospital. She’s informed that the patient they transferred had a head injury requiring surgery, and that the patient had $4,000 in a money belt inside his undershirt. The patient couldn’t be saved, however, because of the delay involved in the transfer to the county hospital. It’s all right—he only died.



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Farinelli and The King

van Kampen, Claire

Last Updated: Mar-21-2018
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Theater

Genre: Theater

Summary:

Anyone walking through a theater district over the past several decades and even centuries ago would likely run into a mad king—Lear, Richard III, George III, Scar. As of 2015, there’s a new mad king to be found in theater districts—King Philippe of Spain in Farinelli and the King.  

The play opens with King Philippe of Spain sitting up in his bed talking to a goldfish swimming around in its bowl trying to avoid the hook at the end of the King’s little fishing pole: 


I was touched by the confidence with which you speak to me of your affairs; the cordiality of your offer to redress mine; the tender anxiety for my health—but I should tell you in the strictest confidence you understand…shh…here the body cares very little for the affairs of the mind. (Act 1, Scene 1)   

As the King’s mental illness progresses from this point and becomes a concern of his court, his wife, Queen Isabella is sent away so that the King cannot physically harm her as he had before. But, what’s to be done for him? It’s the year 1737. While attending an opera in London, the Queen thinks she may have discovered just what the King needs—the renowned castrato Farinelli: 


Then…he began. A long note, held; I must think it was beyond a minute. A swooping, soaring sound and the notes were above the tree-tops, bird-like, unimaginable. When the aria finished just now I couldn’t help my tears; I was unable to move; I just stared at the stage, where he had been…I couldn’t believe what I had seen and heard…I felt something had profoundly changed within me. …and then, —I knew…That I must hope somehow to bring Farinelli to Spain with me. (Act 1, Scene 3)    


The Queen finds a way to bring Farinelli back to Spain, and Farinelli begins to sooth the mad King with his voice from the heavens. The King becomes calmer yet when he moves with the Queen and Farinelli to a house in the forest, where he cuts a hole in the trees so he can hear the “hidden notes” of the spheres above. The King tells Farinelli, “you must sing to me; in the long hours of dark, when my mind is screaming in the silence, then that is when I need you to sing to me.” (Act 2, Scene 5)  

The Queen was sure Farinelli’s singing was effective:

And they say it was Farinelli that helped to restore the health of the King of Spain—just by hearing this wonderful singing voice the King rose out of his depression and wanted to live again! It was the only thing the King could bear in the end. The sound of Farinelli’s voice. (Act 2, Scene 5)  

In Farinelli’s own and immodest assessment: “He is decidedly better because of me, and in his lonely life I have become a song he now depends on.” (Act 2, Scene 1) And, in making his clinical assessment, the King’s doctor was “of the opinion that the King’s illness has turned." (Act 1, Scene 4)  

The utopian existence comes to an end when the King is called back to Madrid to take on an impending English invasion. He would not be seen again.  

This fanciful tale is not so fanciful; it’s drawn from the historical King Philippe of Spain. His grandfather, King Louis XIV of France placed him there, and there he reigned for almost 50 years. Indeed he was mad, and indeed his wife the Queen brought the renowned castrato Farinelli back to Spain where he served the King for 9 years and then the son who succeeded him until this son’s death. From there Farinelli retired to the Italian countryside instead of returning to the public stages in Europe.  

The current NY production  could not replicate Farinelli’s voice exactly now that castrati are not to be found anymore; however, a countertenor was able to produce a swooping and soaring sound. Though Farinelli’s voice could not be replicated perfectly, the staging of the play was replicated as the audience of the day would have seen it in the mid 1700s. The lighting was supplied by candlelight from chandeliers and sconces that were part of the sets. The musicians supporting Farinelli’s performances were also situated on the stage with him. And, as the theaters were arranged then, seats for the audience were available on both sides of the stage. 

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Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

The narrator tracks a hypothetical week in the life and work of a psychiatrist in a major Canadian hospital through the stories of individual patients, some of whom were willing to be identified by name.   

The book opens with “they are us” and the shocking discovery that a patient whose life has been ruined by mental illness is a medical school classmate.  

Other patients have been followed for many years—a woman with eating disorder, a man with bipolar disease, another with schizophrenia. A new patient with intractable depression finally agrees to electroshock therapy, and the first treatment is described. The painful duty of making an involuntary admission pales in contrast to the devastation of losing a patient to suicide.  

Goldbloom’s personal life, opinions, and worries are woven throughout with frank honesty. His mother’s metastatic brain tumor sparks the associated intimations of his own advancing age and mortality.  His genuine fascination with and appreciation of the effective modalities now available are matched by his frustration over how they are beyond reach of far too many because of the stigma that is still attached to mental illness and the lack of resources and political will to make them available.

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Human Voices Wake Us

Winakur, Jerald

Last Updated: Feb-06-2018
Annotated by:
Kohn, Martin

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The 55 poems in Human Voices Wake Us fall primarily into 3 categories: biographical poems, poems about the natural world, and poems about the worldly travels and travails of a man learning and practicing medicine. As I began to read this book, I started checking off all the poems that I thought might merit comment, but stopped early on since almost all called to me--each in their own voice. Thankfully—and skillfully--the poems were often placed in ways that, although drawing from the different aspects of the author’s life, they complemented each other. For example, “The Tyranny of Aging,” a poem about caring for a half paralyzed 95 year old whose last living child has died, is followed by “Redbud,” where the speaker of the poem walks “the ravines, the treed/windbreaks, the creek bottom/all the wooded places//searching for redbuds” (p.49). Another example is the poem “Shock and Awe in Comfort, Texas,” where a solitary walker confronts dive-bombing dragonflies and birds of prey doing what they need to do to stay alive followed by “What I Remember in Embryology,” a poem about being created and born: “Tethered/we are all waiting/fetuses suckling/our way//to heart and hair/teeth and bone/reaching grasping/limb buds into fingers” (p.25).  Winakur came to poetry after realizing that "coming and going in the rooms on daily rounds was not enough to sustain a life"(xiv). What the reader experiences in this book is Winakur’s inspired attempt of seeking—and then delivering through poetry-- more. 

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So Much For That

Shriver, Lionel

Last Updated: Jan-18-2018
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The book opens with Shep Knacker packing his bags for his long-dreamed of “Afterlife”—his word for retirement—in Pemba, an island off the coast of Tanzania. He plans to take his wife, Glynis, and his high school aged son, Zach. This plan is not unexpected because Shep and Glynis have made many “research” trips during their 26-year marriage to find the right place (though never to Pemba). But, there were always reasons not to act on their research. An intervention was needed. Glynis is not home while he is packing because she is at some “appointment.” When she gets home, Shep informs her of his plans for the three of them to leave for Pemba, and he further informs Glynis that he’s going whether she comes or not. In response, she informs him that she has cancer—a bad one (mesothelioma); he unpacks, so much for that.

What unfurls from there is more complicated than just the challenges Glynis’s disease produces, though these are monumental challenges. Other people, too, are in need of Shep’s attention. His father’s decrepitude is advancing, his sister is on the brink of homelessness, and his teenage son is detaching from him and life in general. Shep eventually loses his job as an employee at the handyman company he once owned (“Knack of All Trades”) then sold to fund his Afterlife. There’s more. 

Shep's best friend, Jackson, who also worked with him at Knack of All Trades has two girls, and one of them has familial dysautonomia. This progressive genetic disease of the nervous system produces a constellation of medical problems that are bizarre, intense, and serious, before it ultimately produces a tragic end. The trauma and tragedy this disease inflicts in this story (and in life) encompass the entire family, in spite of the heroic efforts of Jackson’s wife, Carol. 
 
The many plot lines in this novel at times proceed independently of one another, and at other times intersect. They concern serious illness experiences and the effects they have on families and also how the American health care system can place burdens on those who need it. Nevertheless, the two families, beaten down by illness, fatigued from encounters with doctors and hospitals, and exasperated from fights with insurance companies, rally enough to make it to Pemba. The trip becomes financially affordable as the result of some narrative gimmickry involving a financial settlement of $800,000 from the company that put asbestos in equipment Glynis had used years before. They would spend the rest of their lives there, longer for some than for others.   

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Calcedonies

Nisker, Jeffrey

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

Primary Category: Literature / Plays

Genre: Play

Summary:

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

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Patiently Waiting For…

Nisker, Jeffrey

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

Primary Category: Literature / Fiction

Genre: Novel

Summary:

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

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

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

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