Showing 1 - 10 of 880 annotations tagged with the keyword "Patient Experience"

Pain Studies

Olstein, Lisa

Last Updated: Jun-10-2020

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

“All pain is simple” reads the opening sentence of this unusual and striking book. The next sentence reads, “And all pain is complex.” These two sentences foreshadow many puzzles to come: how do we live between chaos and control? Why can’t doctors figure migraines out? Why don’t they agree on a treatment for a particular patient? Olstein is a poet and long-term migraine sufferer. Her book offers many observations about pain, and her attempts to define it, describe it, and plumb its nature through language. There is no linear narrative or argument, rather 38 very brief chapters—usually three to five pages—and many of these could be read in a different order. 

Olstein uses the terms “studies” and “research” for her efforts to capture pain, to explain it, and to understand the cause(s) of her disease. Her mother had migraines; women have three times the rate of men; she had a childhood head injury. Do any of these factors explain her disease? No. And what treatments work? She lists some 50 drugs/supplements/activities she has tried to deal with her illness. None of these have worked in a definitive way. Further, she lists some 30 side-effects she has experienced from these various treatments (pp. 74-75). She has had multiple migraines, one lasting three months, but she also says drugs keep pain at bay: “mostly the medication does work” (p 90).

Some disparate figures help her focus her inquiry: Joan of Arc (possibly a migraine sufferer), the TV character Dr. Gregory House (racked with chronic pain, he is an opioid addict), Virginia Woolf, and Hildegard of Bingen (possibly a migraine sufferer). Also ancient writers such as Lucretius, Pliny the Elder, and Antiphon the Sophist, and contemporaries from different fields, such as mathematics and neurology. Also she refers to poems by Emily Dickinson, Elizabeth Bishop, and C. D. Wright, as well as to an article on gendered literature by Siri Hustvedt. 

Largely written during a writing residency, these are incisive notes plus associations as she plumbs not only her illness but also her responses—as poet, as thinker, as searcher for healing—to the bizarre, long, difficult path of her migraines. (We have only brief mentions of her personal and family life.) While she refers to some scientific literature, it is more often that her insights come from artistic fields such a literature, sculpture, drama, and popular music. She writes that her work with a therapist over a dozen years has been helpful to her.

There is no conclusion…nor can there be. Her illness, treatment, and writing are all works in progress. Patients are different; doctors are different; science evolves. In their many forms and presentations, migraines are mysterious and complex, as this book creatively and powerfully shows. Olstein writes, “The beauty, the love, is in what we perceive” (p. 144). We may take this observation as the guiding principle for the book.   

View full annotation

Summary:

Maybe You Should Talk to Someone:  A Therapist, Her Therapist, and Our Lives Revealed is a memoir that takes the reader behind the closed doors of therapists’ offices and into the relationships that are formed between therapists and their patients.  The author and psychotherapist Lori Gottlieb, most familiar to readers as the writer of The Atlantic’s “Dear Therapist” column, explores the science, the role, and the goals of psychotherapy through her first-person narration.  The memoir is written chronologically with occasional flashbacks and is broken up into four parts, each progressively exposing more about Gottlieb’s and her patients’ experiences.

Though written by a therapist, the book approaches the therapeutic relationship from all angles.  Just as we see Gottlieb in her role as a therapist in Los Angeles, we also see her on the other side of the couch as a patient.  Coming to therapy in the midst of a breakup, she details her own struggles and relationships.  Interspersed between her sessions with Wendell, a therapist she deftly describes as one from “Therapist Central Casting,” and her own appointments with patients is Gottlieb’s long journey to becoming a therapist (including brief stops in Hollywood and in medical school) and how she came to understand the power of interpersonal relationships. 

View full annotation

Summary:

A dramatic prologue depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is ill with Alzheimer’s disease and does not, for that moment, recognize him. The following chapters provide a long flashback, beginning with Arthur’s family background, his youth as a tough street kid in Brooklyn, his medical education, and his marriage to Joan. We learn of their work in China, travels, and professional success. Arthur gradually realizes that the US health care system has become “a rapidly fragmenting and increasingly chaotic and dysfunctional non-system” (p. 126). Further, he sees a reductive focus on patients as mere biological entities, ignoring their personal, familial, and cultural natures. As a result, “Caregiving in medicine has gone from bad to worse.”

Joan suffers from an atypical kind of Alzheimer’s that increased over “that dismal ten years” (p. 156) with Arthur providing care to her, at cost to himself. There is no home health aide, no team approach with doctors, indeed no wider interest in her care other than the state of her diseased brain. Kleinman vividly describes the toll on her and on him.

Kleinman is aware of the privilege he has as a Harvard doctor, well known for his psychiatric work, his teaching and writing, and his wealth—in contrast to other patients and families. Some patients go bankrupt from medical bills.

Visits to nursing homes reveal a wide range of social conditions, contexts, and levels of care; the best have a sense of “moral care” (p. 200). Joan’s final days are hard. Supportive family members agree to her living will and healthcare proxy for morphine pain control only. She dies, apparently “at peace” (p. 232).

In the last pages Kleinman introduces the notion of “soul” as “essential human interactions” (p. 238). He discusses some of the limits of medicine (see paradoxes below) but also praises local efforts to improve humane care, such as team approaches, uses of narrative medicine, and medical/health humanities programs.  

View full annotation

From Nothing

Krugovoy Silver, Anya

Last Updated: Jan-06-2020
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

There are 48 poems in this volume (the author's third full-length collection), divided into three sections.  The author's first book, “The Ninety-Third Name of God” introduced us to her family and especially to her diagnosis--inflammatory breast cancer--the disease discovered in 2004 during her pregnancy, the disease that claimed her life in August, 2018 when she was forty-nine-years old.

In her second collection, “I Watched You Disappear”  Silver's poems invited us to accompany her on her journey through treatment, anger, despair, determination, and faith. This third collection (her penultimate) continues the author's beautifully written illness narrative, again presenting moments of joy and of despair, and always of hope.

View full annotation

The Little King

Rushdie, Salman

Last Updated: Dec-19-2019
Annotated by:
Galbo, Sebastian

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

Dr. R. K. Smile, MD, founder of Smile Pharmaceuticals, Inc. (SPI), enjoys a sudden lurch into fortune and celebrity. Dubbed the ‘Little King’ by his Atlanta-based Indian community, Dr. Smile is a towering medical authority, philanderer and philanthropist, known to be both generous and avaricious. His pinnacle pharmaceutical coup, the patent that has earned him billionaire status, is InSmile™, a sublingual fentanyl spray designed for terminally ill cancer patients. Dr. Smile’s entrepreneurial vim, however, hardly stems from benevolent medical research, but rather an ‘excellent business model’ that he observed on a visit to India during which a Bombay ‘urchin’ handed him a business card that read, ‘Are you alcoholic? We can help. Call this number for liquor home delivery.’ The blunt practicality of building a market around sating addiction strikes the doctor as entirely sensible. Often wistful about India’s ‘old days,’ Dr. Smile fondly recounts the insouciance of neighborhood dispensary hawkers, their willingness to ‘hand out drugs without a doctor’s chit.’ Though admitting that ‘it was bad for [their] customers’ health but good for the health of the business,’ Dr. Smile yearns to replicate a similar culture of delinquent pharmacology, an unregulated market capable of profiting from supply-and-demand forces but indifferent to the wellbeing of its patrons. 

In the meantime, Dr. Smile’s wife, Mrs. Happy Smile, a simpering and daft socialite, envisions grand branding prospects that will globalize the Smile name through ostentatious publicity—inscribed name placards at the ‘Opera, art gallery, university, hospital […] your name will be so, so big.’ She refers to the worldwide reputation of the OxyContin family, the proliferation of the family’s name and esteemed place among prestigious cultural institutions: ‘So, so many wings they have,’ she says, ‘Metropolitan Museum wing named after them, Louvre wing also, London Royal Academy wing also. A bird with so, so many wings can fly so, so high.’ 

InSmile™ sales drive Dr. Smile’s burgeoning drug trade, as his prescription becomes preferred to conventional OxyContin highs due to its ‘instant gratification’ in the form of an oral spray. While SPI fulfills special house-calls for American celebrities and customers in ‘gated communities from Minneapolis to Beverly Hills,’ it also ships millions of opioid products to places such as Kermit and Mount Gay, West Virginia—communities, outside fictional contexts, that bear real-world vestiges of the opioid epidemic (West Virginia has the highest rate of drug overdose in the United States). Through a lecture series scheme, Dr. Smile bribes respected doctors to publicize and prescribe the medication, further entrenching the dangerous drug in medical circles.

As the SPI empire collapses following a SWAT-led arrest of his wife, Dr. Smile muses indignantly on his reputation and the ingratitude of his clients. Tugged again by nostalgia for the old country, he justifies his drug trafficking by likening it to quotidian misdemeanors, instances when one could circumvent the inconveniences of India’s law by knowing how to pull the venal strings of corrupt systems—like cutting a long ticket queue at the rail station, he says, by paying a little extra at a backyard office; or bribing government officers to stamp customs papers required to ship restricted antiques abroad—‘We know what is the oil that greases the wheels.’ With this deleterious mindset, combining nostalgia and entrepreneurial greed, Dr. Smile’s future is uncertain, but he is resolved to return—after all, he says, ‘I have lawyers.’

View full annotation

Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

There are 46 poems in this volume (the author's second full-length collection), divided into four sections.  The author's first book, "The Ninety-Third Name of God" , introduced us to her family and especially to her diagnosis--inflammatory breast cancer--the disease discovered in 2004 during her pregnancy, the disease that claimed that claimed her life in August, 2018, when she was forty-nine-years old.  This second collection continues Silver's illness narrative, poems that might serve as a journal of her journey through treatment, anger, despair, determination, and faith.

View full annotation

The Father

Zeller, Florian; Hampton, Christopher

Last Updated: Nov-19-2019
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Plays — Secondary Category: Performing Arts / Theater

Genre: Play

Summary:

This annotation is based on a live performance presented by the Manhattan Theater Club at the Samuel J. Friedman Theater  in New York City that ran between April and June of 2016. The play was nominated for a 2016 Tony Award for best play, and Frank Langella won the 2016 Tony Award for best performance by an actor in a leading role in a play. In supporting roles were Kathryn Erbe, Brian Avers, Charles Borland, Hannah Cabell, and Kathleen McNenny.
 
The Father is the story of an older man with Alzheimer’s disease (André) and his progression through first living on his own, then living with his daughter (Anne), and finally living in a nursing home. Or, is it? It’s hard to tell, and that is the intention of the playwright, Florian Zeller, who told The Guardian (2015), “The Father is about an old man lost in the labyrinth of his mind.” The objective of the play is to bring audience members into the actual dementia experience so that rather than witnessing André’s disorientation they feel his disorientation.  

The director, Doug Hughes, creates the audience experience through an interplay among set designs, lighting effects, repeated scene sequences, and time loops as contexts for various symptom manifestations like memory loss, paranoia, anger, and lasciviousness. All the scenes take place in one room that serves at different times as André’s flat, Anne’s flat, and a nursing home room. The furnishings of the room change based on the supposed setting, but the walls are exactly the same for all of them. In different scenes, André is not always sure where he is, and neither is the audience.  

Early in the play, André hears Anne tell him she’s relocating from Paris to London with her lover, but she is present to him in most of the scenes thereafter and until the end of the play when he’s told by a nurse that Anne had moved to London some time ago. Had she really left Paris and was never actually there in all those other scenes? He wonders and so does the audience. In other scenes, the way characters from the past and present enter and exit distorts time for André, and so while audience members know the linear trajectory of the disease course, they can’t be sure of where they are in that course during a given scene. With the last scene taking place in André’s nursing home room with the same walls seen in his flat and Anne’s flat, the audience can’t be faulted for wondering whether all that came before was just one of André’s hallucinations.  

The play does not keep audience members in a perpetual state of confusion and despondency. Farcical elements are peppered throughout that produce occasional laughs, such as when Anne contests André’s account of a previous conversation, he suggests it’s she who has the memory problem: “You’ve forgotten. Listen, Anne, I have a feeling you sometimes suffer from memory loss. You do, I’m telling you. It’s worrying me. Haven’t you noticed?”

View full annotation

Summary:

Michael Pollan, a journalist who is known for his work on food, takes on mind-altering drugs, or more specifically, psychedelics. According to Pollan, “after several decades of suppression and neglect, psychedelics are having a renaissance” (p. 3). His aim is to tell “the story of this renaissance” (p. 4). 

Pollan pegs the beginning of the renaissance to three events in 2006. The first was the symposium surrounding the one–hundredth birthday celebration of Albert Hoffman, who is credited with discovering LSD (he was in attendance and lived for another two years). The symposium put a spotlight on a few studies of psychedelics that inspired other researchers and practitioners to enter or stay in the field. The second event was a U.S. Supreme Court decision permitting importation of a banned psychedelic substance for religious purposes, which effectively reanimated federal government recognition of psychedelic drugs. The third event was the publication of a well-received study showing the psychological effects of certain psychedelic drugs, and in so doing, conferred some credibility and encouragement for further study (and use). Psychedelics were beginning to inch their way from counterculture to mainstream culture.

Before Pollan picks up on what happens after the eventful year of 2006, he goes back to the early 1950s when psychedelics first attracted attention as treatment for “addiction, depression, obsessive-compulsive disorder, schizophrenia, autism, and end-of life anxiety” (p. 141). He quotes researcher Stephen Ross, who asserts that during this time, “there had been forty thousand research participants and more than a thousand clinical papers!…Some of the best minds in psychiatry had seriously studied these compounds in therapeutic models, with government funding” (pp. 142-143). The trajectory towards therapeutic uses would come to an end in the 1960s when “a moral panic about LSD engulfed America, and virtually all psychedelic research and therapy were either halted or driven underground” (p. 185). Pollan identifies several contributing factors to the precipitous reversal in the status of psychedelics. Among them were their associations with Timothy Leary (“Turn on, tune in, drop out”) and with counterculture movements that were seen as threats to mainstream society in general. The era ends in 1970 when psychedelics were made illegal in the U.S., after which they were largely forgotten. They began to reappear in the 1990s, which rekindled an interest in them that would reach an inflection point in 2006.

Bridging the mid-twentieth-century history Pollan provides and the era commencing in 2006 he describes in detail later, is a chapter reporting on his own experiences with psychedelics. Pollan arranged three separate “trips” with three individual psychedelics: psilocybin, LSD, and the little-known 5-MeO-DMT, or “The Toad.” He carefully chose a tour guide for each one. Pollan experienced what he interpreted as a dissolution of his ego, which made more room for his consciousness: “I was present to reality but as something other than my self” (p. 264). He also reported spiritual and mystical experiences, which surprised him because he is not religious in much of any way, and he found others who had similar experiences.  
Even the most secular among them come away from their journeys convinced there exists something that transcends a material understanding of reality: some sort of a ‘Beyond.’ (p. 85)  
The term “spiritual” for Pollan became “a good name for some of the powerful mental phenomena that arise when the voice of the ego is muted or silenced” (p. 288). 

In another chapter bridging the past and the present, Pollan covers the neuroscience of psychedelics and the current understanding of how the brain works. The chapter will appeal mostly to neuroscientists, pharmacologists, and clinicians. It’s not required to appreciate what the book offers on the whole. 

Pollan devotes a chapter to ongoing investigations into clinical uses for psychedelics in near death, addiction, and depression. These investigations had moved into mainstream biomedical research institutions. Results were encouraging enough to generate additional studies, expand treatment programs, and motivate the U.S. Food and Drug Administration (FDA) to push researchers for more information on depression in particular. Pollan also reports that “dozens of medical schools have asked to participate in future trials, and funders have stepped forward to underwrite those trials” (p. 350). 
 

In the final chapter, Pollan recognizes that despite the momentum behind mainstream biomedicine interest in psychedelics, established clinical and regulatory frameworks pose daunting challenges for broad-based adoption anytime soon. That aside, Pollan argues for the use of psychedelics in situations that are not limited to health problems per se, but also for “the betterment of well people,” which was also an interest of early researchers. To Pollan, the betterment comes from the effect of psychedelics to expand consciousness. 
Most of the time, it is normal waking consciousness that best serves the interests of survival—and is not adaptive. But there are moments in the life of an individual or a community when the imaginative novelties proposed by altered states of consciousness introduce exactly the sort off variation that can send a life, or a culture, down a new path. (p. 407) 
His conclusion is that without the assistance of psychedelics, the vastness of the mind and the mysteries of the world can never be known. Psychedelics for everyone! 

View full annotation

Summary:

This illuminating and disturbing book explores how various forms of white supremacy became expressed in policies, laws, and elected officials, such as Donald Trump. Physician and sociologist Metzl details social changes in Missouri, Tennessee, and Kansas, where white Americans backed changes that, ironically, dramatically harmed them with gun suicides, school dropouts, worse healthcare, and shorter life spans. For Metzl, “Whiteness” refers not to skin color but to a political and economic system of white privilege.

Metzl's thesis that: “Trump supporters were willing to put their lives on the line in support of their political beliefs” was, in fact, a sort of “self-sabotage” (pp. 5-6). While a conservative political movement fostered white racial resentment, largely in lower-income communities, the mainstream GOP did its part by crafting policies against the Affordable Care Act, higher taxes, and restrictions on guns. An atmosphere of polarization and political stasis grew. Metzl writes: “Compromise, in many ways, coded as treason” (p. 11).  

Metzl focuses on the examples of Missouri, Tennessee, and Kansas to “suggest how the racial system of American fails everyone” (pp. 16, 20). He visits each state, leading focus groups, interviewing formally and informally, reading newspapers, and inductively formulating concepts that seem to explain the nonsensical behavior of rejecting helpful programs. For example, because “risk” in Missouri has become a code name for possible attacks by black people, white people buy guns, especially when restrictions are removed. Many white men feel that a gun (or many guns) restores their privilege, but suicide of white males, often low-income, goes up. Metzl’s statistics and charts show contrasts with other states with stricter laws and lower suicide rates. He calls for preventive medicine to lower such deaths.  

For Tennessee, the Affordable Care Act offered many benefits to poor or middle-income people, but Republicans (and especially Trump) attacked it as big government over-reach, socialism, exorbitant cost, a program that would help minority people, for example “welfare queens.” “Cost” became a proxy for the “we don’t like it,” even when the economics would be favorable for good healthcare for all. Blacks were generally in favor of ACA, but white blue-collar men swore by their independence and autonomy. Neighboring Kentucky accepted ACA, and ten graphs included in the book clearly chart the better outcomes for Kentucky in such areas as insurance coverage, death rates, and seeing a doctor.  

Metzl returns to Kansas, where he grew up and recalls the pride Kansans had in their state. Republican Governor Sam Brownback enacted massive tax cuts with large reductions to state services and school funding, an “experiment” in “epic defunding.” The GOP, Tea Party, Koch brothers, and “trickle down” theories all played a part in benefiting the wealthy financially, while minority and lower-income groups paid more. Infrastructure, such as roads, suffered. Untested charter schools collected wealthy white students, while public schools plunged in funding, test scores, and graduation rates (see 17 graphs). Since education is a predictor of health, there are and will be long-term costs to Kansans, especially for minority groups.  

Metzl attacks the “Castle Doctrine” (“a man’s home is…”) as a symbol of narcissism, individualism, and as a risk for all citizens when social structures are abandoned. He closes with some hopeful examples of social change for the better.

View full annotation

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

Genre: Treatise

Summary:

Louise Aronson, a geriatrician, argues that we should create Elderhood as the third era of human aging, joining the earlier Childhood and Adulthood. This new concept will allow us to re-evaluate the richness of this later time, its challenges as body systems decline, and, of course, the choices of managing death. This important and valuable book is a polemic against modern medicine’s limits, its reductive focus, and structural violence against both patients and physicians. She argues for a wider vision of care that emphasizes well-being and health maintenance for not only elders but for every stage of life.   
          
Aronson argues that contemporary society favors youth and values of action, speed, and ambition, while it ignores—even dislikes—aging, older people, and the elderly. She says ageism is more powerful than sexism or racism—as bad as those are. Medical schools ignore the elderly, focusing on younger patients, especially men, and medical students perceive geriatrics as boring, sad, and poorly paid. Primary care, in general, seems routine and dull. By contrast, medical treatments, especially high-tech, are exciting and lucrative. In medical schools a “hidden curriculum” focuses on pathophysiology, organ systems, and drugs, ignoring patients’ variability as well as their suffering and pathos. Further, business and industrial models make “healthcare” a commodity, and nowadays “doctors treat computers, not people” (p. 237). Aging has become “medicalized” as a disease. Medicine fights death as an enemy, often with futile treatment that may extend a dying process.
        
Instead, Aronson says we need to bring back the human element, putting care of people at the center, not science. She calls for a new paradigm with ten assumptions (p. 378). Number 2 reads: “Health matters more to both individuals and society than medicine.” Number 9 claims, “As an institution, medicine should prioritize the interests of the people over its own.”  
      
Many practical changes would follow, from redesigned “child-proof” drug containers to buildings and public spaces that are more congenial to older people—and, in fact, to everyone else. We should change our attitudes about old age. For example, we might use the adjective “silver” for a medical facility that is friendly to and usable by older people. Changing our attitudes about aging can help all of us imagine more positive futures for each one of us and for all of our society.

View full annotation