Showing 1 - 10 of 480 annotations tagged with the keyword "Medical Ethics"

Summary:

Beth Macy has been a newspaper reporter in the Roanoke, Virginia area for three decades. In this book, she provides extensive reporting on the opioid crisis, how it developed and wreaked havoc in Appalachia, and how it grew into a national crisis across the United States.  

“Dopesick” is the colloquial term people who are addicted and addiction medicine specialists use to describe the constellation of wrenching and violent symptoms opioid withdrawal causes. As one of Macy’s subjects describes it:

You’re throwing up.You have diarrhea. You ache so bad and you’re so irritable that you can’t stand to be touched. Your legs shake so bad you can’t sleep. You’re as ill as one hornet could ever be. And believe me, you’ll do anything to make the pain go away.” (p. 41)
As a result, not long after a person is addicted to opioids, drug seeking behaviors are not motivated by the urge for the next and best high, but instead are driven “to avoid dopesickness at any cost” (p. 9). 

Macy divides her reporting into three major parts: 1) the ways Purdue Pharma fueled the explosion of opioid addiction beginning with the introduction of its product Oxycontin in 1996; 2) the ways in which people get addicted to opioids and how they get their supplies; and 3) the ways the U.S. health care system, criminal justice system, Congress, state legislatures, and regulatory agencies have failed in preventing and fixing the addiction crisis. 
 

As a journalist, Macy weaves the stories of individuals into the larger story of the opioid addiction crisis: people who became addicted to opioids and the effect it had on their families, and the stories of health care professionals who pulled alarms about the rapidly rising rate of opioid addiction and tried as best they could to treat addicted patients and protect the public. We read about the Purdue Pharma executives who were blamed and prosecuted for the marketing campaigns that turned localized opioid addiction patterns into a national opioid addiction epidemic. And we read about individual sheriffs, investigators, prosecutors, judges, and community activists who were trying to stem the tide of addition and death. These stories intersect throughout the book.

Embedded among the individual story lines are digressions Macy uses to elaborate on certain aspects of the opioid addiction crisis. She provides historical perspectives on drug addiction, and how this crisis differs from those of the past. She puts an emphasis on how trends in medical practice to liberalize the use of opioids in the management of all types of pain—minor and major, acute and chronic—converged with Purdue Pharma marketing campaigns for its proprietary opioid products. She cites statistics to show how fast the epidemic was worsening, how widely it was spreading across the United States, and how deadly it had become with mortality rates exceeding those of AIDs mortality at its peak. Other digressions cover how illicit opioid supply chains are created and maintained, and how different levels of governments reacted to the crisis. 

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Three Identical Strangers

Wardle, Tim

Last Updated: Nov-08-2018
Annotated by:
Thomas, Shawn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The world is a big place – 7.4 billion people and counting. As much as we all enjoy the game of finding our doppelganger in a crowd, there probably isn’t anyone in the world who is exactly like us. With a genetic code of over 3 billion base pairs, of which there are innumerable permutations, we would be hard pressed to find a clone of ourselves even if the world had 7 trillion people. The exception is if you were born with an identical sibling. But then again, you would know if you had a twin. Wouldn’t you?

The documentary Three Identical Strangers tells the unbelievable story of Bobby Shafran, Eddy Galland, and David Kellman – three identical triplets who were separated at birth and serendipitously reunited at the age of 19. The film takes us through the circumstances of their reunion, highlighting the brothers’ instant rapport over their similarities and the ensuing fame resulting from the public fascination with their extraordinary story. It began as a euphoria-filled saga complete with talk show interviews, movie cameos, and even a successful restaurant which they called “Triplets”.

The honeymoon phase ended in horrific fashion once the parents of the respective siblings began asking questions as to why the brothers were separated in the first place. A journalist who had been investigating the triplets’ adoption agency, Louise Wise Services, helped to uncover the details of an elaborate study performed by a child psychiatrist named Dr. Peter Neubauer. In this study, each brother was placed into a home which had another adoptive sister, and specifically assigned to a family of lower, middle, and upper-class backgrounds. While the exact details of the study objective remain unknown, it appears that the study was trying to determine whether psychiatric illness was correlated more strongly with genetics or with developmental environment; this is referred to colloquially as a “nature vs. nurture” experiment.

The implications were earth-shattering. The brothers struggled to cope with the realization that they had been marionettes in some sort of sick experiment, with Dr. Neubauer pulling the strings the whole time. Even worse was the fact that there were possibly several more identical siblings with the same story who were deprived of their biological soul mate, all at the behest of Neubauer and his associates. In fact, other sets of identical siblings were eventually made aware of the experiment, and did have the chance to meet, albeit many years after their birth.

The triplets also learned that their biological mother had serious psychiatric problems – hence their inclusion in the study. All three brothers had behavioral difficulties as adolescents, and it was distressing to consider whether their issues may have been exacerbated by the separation anxiety they experienced upon being separated at birth. In particular, Eddy suffered from worsening episodes of bipolar disorder throughout his life. In 1995, at the age of 33, he committed suicide. He is notably absent for the duration of the documentary, with Bobby and David narrating much of the film. Today, they are still trying to uncover the particulars of Dr. Neubauer’s study, but the research records remain under seal at Yale University until 2066. They may never know the full extent of what was done to them and why.

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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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The Anatomy Lesson

Siegal, Nina

Last Updated: Jul-31-2018
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Fiction

Genre: Novel

Summary:

In 1632, at the age of only 26, Rembrandt finished a large (85.2 in × 66.7 in) oil painting that was destined to become one of his best known works and certainly one of the linchpins in the nexus between the graphic arts and the medical humanities. "The Anatomy Lesson of Dr. Nicolaes Tulp" depicts the dissection of the flexor tendons of the left arm of a cadaver by the eponymous doctor while an attentive audience of his peers, identifiable members of the medical and anatomical community of early 17th century Amsterdam, looks on. Nina Siegal's novel tells her imagined back story of this richly illustrated anatomy lesson which, once you read her captivating novel, will make you ask yourself, as I did, why no one has thought fit to do so heretofore.

Using multiple first person narrators, Siegal examines the characters (some historical, others wholly fictional) and events leading up to the anatomy lesson and Rembrandt's artistic rendering of it. Inventing a life for Aris Kindt (born Adriaen  Adriaenszoon), the historically real career criminal whose recently judicial hanging provides the body we see in the painting, Siegal provides him with Flora, a lover who is carrying his illegitimate child at the time of his public - and quite raucous - hanging. Growing up in Leiden, in the same neighborhood as Flora and Rembrandt himself, Kindt was the physically and emotionally abused son of a leather worker and, in Siegal's imagination, a petty but persistent thief hanged for his inveterate and irremediable life of crime. As was the custom of the day, his body was legally assigned to an anatomist for public dissection. With a non-linear narrative, organized into brief chapters entitled for body parts, Siegal traces the beginnings of three of the protagonists - Kindt, Flora, and Rembrandt. She constructs  how their lives intersect not only before, during and after the hanging, but also in more philosophical strokes, namely the medical, theological and artistic tapestry on which this image rests. There are several minor characters, like Tulp and his family; Jan Fetchet, the "famulus" responsible for securing and preparing Kindt's body immediately following the hanging; and even René Descartes, who seems to have been in town during this momentous occasion pursuing his own polymathic research, which included anatomy at the time.  Siegal adds a few reports dictated by a fictional modern- day conservator offering her interpretation of many of the details of Rembrandt's masterpiece, details that serve to highlight aspects of Siegal's narrative, such as the possible artistic re-implantation of Kindt's amputated right hand.

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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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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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The Dark Flood Rises

Drabble, Margaret

Last Updated: Apr-09-2018
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Fran, an aging but energetic expert on elder housing, drives around the English countryside visiting facilities and also friends and family.  She, herself, is not at all ready to go gentle into the good night so many others are facing.  But everywhere she encounters reminders of mortality--her son's fiancee suddenly dies; an old friend is dying a lingering death of cancer; others in her circle of family and friends are facing their own or others' mortality in various ways, including natural disasters like earthquake and flood.  The episodic story takes place in England and in the Canary Islands; the large cast of characters are linked by intersecting stories and by their mortality, of which they, and the reader, are recurrently reminded.    

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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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