Showing 31 - 40 of 912 annotations tagged with the keyword "Patient Experience"

Annotated by:
Donley, Carol

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

 Cortney Davis has divided this collection of her poetry into seven major sections which she calls “Voices.” The first and last sections are “Voices of Healing” which frame and wrap around the others: “Home,” “Desire,” “Suffering,” “Faith,” and “Letting Go and Holding On.” The sections include previously published poems as well as new ones.  Davis is known for her ability to see and understand what is going on and to express that in ways that help the reader “get it.”  This collection also shows her ability to hear the unique voices that express suffering, faith, desire—and to convey empathic understanding of the speaker.  Sometimes she gets angry with the speaker. The poems range through time, from her childhood, nursing training, nursing experiences, deaths of her parents, to more current experiences with grandchildren.  Throughout there is a consistent caring and compassion, mixed with many other feelings, many of them contradictory.

View full annotation

Annotated by:
Grogan, Katie

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In her memoir Ask Me About My Uterus, science writer Abby Norman tells two intertwined stories: one about her fraught relationship with her own chronically ill body, and another about the fraught relationship between women and medicine. Norman is a sophomore at her dream college when a sudden, unrelenting abdominal pain sends her to the emergency room—and into a revolving door of medical appointments for years to come. Thus begins her diagnostic odyssey, protracted by an infuriating obstacle: not only must she endure excruciating pain, she must convince doctors that it’s real.

Norman is eventually diagnosed with endometriosis but has several frustrating clinical encounters along the way. Her symptoms are repeatedly minimized or disbelieved by doctors of various identities and specialties. One actually says the words that have long been inferred to Norman and so many women before her: “This is all in your head.” Finally receiving an accurate diagnosis provides some measure of clarity about Norman’s pain but little in the way of relief. She learns firsthand that medical knowledge about endometriosis is desperately lacking—a troubling realization given its prevalence. A commonly cited statistic suggests one in ten women have endometriosis but, as Norman notes, most studies have excluded marginalized communities, so the incidence is likely higher. Norman ultimately becomes an expert on the condition, setting her on a path to advocate for herself and others with endometriosis—and to write about it.  

The memoir is organized chronologically, beginning with the onset of Norman’s symptoms about seven years prior to the book’s publication, with occasional flashbacks that draw connections between her current crisis and her difficult childhood. She opens several chapters with descriptions of famous case studies and experiments, situating her own experience within a long and disturbing lineage of women dismissed, misdiagnosed, and mistreated by medical professionals.  

View full annotation

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

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