Showing 1 - 10 of 856 annotations tagged with the keyword "Patient Experience"

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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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This intelligent and compelling book invites us to evaluate the losses pertaining to “modern death” and to consider better ways—whether from the past or in the future—to care for the dying, their families, and all care-givers.   
            
Some chapters, such as “How Life (and Death) Were Prolonged,” are historical, describing changes in inoculations, living conditions, and medical care that extended the human life span but also changes in dying, now often prolonged by technology. Another chapter, “How We Learned Not to Resuscitate,” relates how CPR, initially lauded and popularized, is now widely understood as futile care, especially in older people. Warraich discusses various attempts to define death (brain-based, heart-based, American Bar Association, Harvard Criteria, Uniform Determination of Death Act, even NASA) and some of the issues that still remain. 
 

Other chapters are more physiological:  “How Cells Die” explains natural processes of cell death (necrosis, autophagy, and apoptosis). Most non-medical readers haven’t heard of these and perhaps some medical personnel as well. Unaware of them as regular and usual processes, we resolutely expect people to live some four-score and ten, perhaps even more. The next-to-last chapter, “When the Plug is Pulled” discusses “terminal sedation” (a legal dosage that eases pain but is not strictly speaking euthanasia or murder) and statutes that allow for assisted death and removal of life-sustaining machines. The Nancy Cruzan case and others illustrate many difficulties. (Cruzan was in a persistent vegetative state and supported by a feeding tube. A 1990 U.S. Supreme Court 5-4 decision allowed the removal of the tube.) Warraich argues further for “patients’ right to demand and acquire the means to end their suffering with the aid of a physician” (p. 263).              

Lack of resolution of these difficulties leads to problems for families of the dying and all medical personnel attending them, especially in ICU situations. Living wills are often of no help and “the end of life has become a battleground” (p. 211).
He argues that surrogate roles for decisions at the end of a life often do not represent what the patient actually wanted because the surrogate's values may be different from the patient's and family members may not reach agreement on decisions. He concludes, “All in all, overinvolved family and underinvolved doctors unsurprisingly make for a particularly caustic combo” (p.214).                      

In “When Death Transcends” we read that spiritual and religious matters are often ignored in medical settings. Such resources, however, “may be the only means that patients have of finding comfort” (p. 148). Warraich surveys various religions, including his own, Islam. This is one of the longest chapters in the book and carefully considers the wide range of faiths people have and the regrettable lack of training for doctors in this area.
           

Warraich concludes, “Death needs to be closer to home, preceded by lesser disability and less isolation” (p. 278). For deaths to be “truly modern,” we need to push past taboos and misunderstandings about death. 

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Sky the Oar

Nigliazzo, Stacy

Last Updated: Oct-16-2018
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

"Sky the Oar," Stacy Nigliazzo's second full-length poetry collection, contains 52 poems in four sections. These poems are gems--and gem-like, each poem has been created by a compression of words into unique forms.  Nigliazzo's poems wander along the page, floating in white space as margins move in and out. In the three "Triptych" poems, pages 36, 46, and 61, Nigliazzo uses an article written in 2015, the report of a woman's murder, as a pale background. By choosing words to highlight, the poet creates spare poems that emerge as commentary on this crime--"Triptych III" offers only 6 highlighted words (pages 61-62). Nigliazzo has abandoned the more common narrative form--long or short lines that tell a story--and instead gives the reader hints, sign posts along the way. These poems are not meant to be read quickly. It is only by pondering them, allowing the imagination and intellect to fill in, so to speak, the white space around the words, that the impact and complexity of these stunning, impressionistic poems becomes evident. 

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Summary:

Naomi Oreskes and Erik Conway examine the successful efforts of a few scientists to jam the spokes in the wheel of science, delaying needed mitigations (e.g., regulations) to protect individuals, vulnerable populations, nations, and the earth.

The authors chose the well-known and controversial debates around second hand tobacco smoke, acid rain, the strategic defense initiative, the ozone hole, global warming, and the pesticide DDT as the substrate for their investigation. Each issue involves a large accumulation of evidence of the dangers it presents to humans. And each provoked skepticism and opposition from related industries, contrarian scientists, and anti-regulation politicians and institutes. Industry opposes regulations that could threaten their businesses. Free market ideologists do not want regulations that could threaten capitalism and accelerate a slide into socialism. 

Faced with mounting scientific evidence and general agreement amongst credible researchers, those whose interests were threatened needed a strategy to win that didn’t rely on scientific evidence. The tobacco industry led the way by hiring “a public relations firm to challenge the scientific evidence that smoking could kill you,” (p. 15) and to ensure that “scientific doubts must remain.” (p. 16) The authors drew from publicly available documents to best convey this idea:

‘Doubt is our product,’ ran the infamous memo written by one tobacco industry executive in 1969, ‘since it is the best means of competing with the ‘body of fact’ that exists in the minds of the general public.’ (p. 34)

The industry realized, however, that renowned scientists would be needed “to merchandize doubt,” (p. 33) and so they recruited some. First among them was Frederick Seitz. He was a physicist who had been involved in the atomic bomb program during World War II and later in Cold War weapons programs. He knew next to nothing about the science showing the harm of tobacco smoke. However, his time as president of the National Academy of Sciences and as president of Rockefeller University accorded him credibility on all matters of science, at least to constituencies outside of science. His attacks on the science showing the harms of tobacco smoke had a lot to do with the decades it took before governments and the public took meaningful actions.

This became the approach opponents took against of science-based initiatives they wanted to scuttle. Seitz was recruited for other campaigns, but so were other physicists with similar backgrounds to form what Oreskes and Conway call a “small network of doubt mongers.” (p. 213) They make a point that this network only threw darts—poisonous darts—at the science they targeted and never once contributed their own original research to support their opposition to any scientific findings or consensus.

Oreskes and Conway tie the motives of these scientists primarily to their fierce devotion to liberty, which then meant fighting Communism and any other forms of socialism. They suggest that some degree of curmudgeonry and contrarianism is involved as well, but they focus more on political ideologies as the primary drivers for these people:

they were working to ‘secure the blessings of liberty’…if science was being used against those blessings—in ways that challenged the freedom of free enterprise—then they would fight it as they would fight any enemy. For indeed, science was starting to show that certain kinds of liberties are not sustainable—like the liberty to pollute.” (p. 238-239)

The authors hold the news media responsible for much of what the doubt mongers accomplished, specifically faulting them for applying the “fairness doctrine”—each side of an argument will get equal time—to the point of absurdity.

it especially does not make sense to dismiss the consensus of experts if the dissenter is superannuated, disgruntled, a habitual contrarian, or in the pay of a group with an obvious ideological agenda or vested political or economic interest. Or in some cases, all of the above. (p. 272-273)

The news media, they assert, are the gatekeepers and should be able to distinguish charlatans and snake oil salesmen from legitimate scientists. In this role, they failed as far at the authors are concerned. There can be no network of doubt mongers without a news media that either can’t or won’t call them out.

In contrast, the authors give the scientists who didn’t call out the doubt mongers a more forgiving critique. For the most part, they say, scientists facing a fight will retreat to their labs and concentrate on their work—they’re discovers, not fighters. On them, “intimidation works.” (p. 265)

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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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