Showing 1 - 10 of 874 annotations tagged with the keyword "Patient Experience"

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! 

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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.

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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.

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The Genius of Marian

Fitch, Anna; White, Banker

Last Updated: Sep-16-2019
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Pamela Steele White was diagnosed with early onset Alzheimer’s disease at the age of sixty-one. A year later, in 2009, as her disease progression was evident, her son Banker, a documentary filmmaker, turned his camera on, and he kept it on until the autumn of 2012. His mother lived another four years.  

The film begins showing the cruelest of ironies at work. Pam looks up at the camera, introduces herself, and says she’s working on a project she calls, “The Genius of Marian.” Marian is her late mother, who was an accomplished painter. She had Alzheimer’s disease before she died in 2001. Pam’s purpose with her project was to keep her mother alive “by at least not forgetting who she was.” Alas, she confesses she hadn’t been working on the project because she had forgot about it until just recently. 

The film covers Pam’s plight over the next three years in various settings that show her mental and physical capabilities at the time. She answers questions family members and her doctor pose; we see her on family outings, and at moments when she’s captured alone lost in her thoughts, and lost in her house. We mostly see her struggle with memories and words, and with physical coordination (e.g., putting on a jacket). Some conversations reveal that Pam exhibited aggression and agitation, but we never see any of these episodes, only some nonviolent defiance on occasion. 

Family members are also a focus, mostly in the form of interviews. Pam’s husband of 40 years, Ed, is interviewed several times throughout the span of the film. As we see Pam’s capabilities diminish, we see Ed’s burden compound and his responses gather pathos. Pam’s only daughter and her younger son are interviewed and shown with their mother to a lesser degree. Some friends of many years are interviewed once or twice to round out the perspectives on Pam’s course over the time of the filming. 
 

The film is augmented with family movies capturing scenes of Pam and her brother with their parents, of Pam and Ed with their children, and of Pam and Ed with their children's children. These scenes are often spliced into the documentary footage to show similar outings at similar locations across the three generations.

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Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Mallory Smith died of complications following a double-lung transplant for cystic fibrosis (CF). She was twenty-five years old and kept an extensive journal on her computer for 10 years. Salt in My Soul: An Unfinished Life is her memoir, edited by her mother, Diane Shader Smith, from the 2,500 pages of notes, observations and reflections which Mallory Smith wrote. The title refers to the intimate relationship of salt imbalance in cystic fibrosis, and the fact that Mallory felt her most well while swimming in the sea. Diagnosed at age three, she spent much of her days and nights treating the disease with medication, nutrition, chest percussive treatments, breathing treatments, adequate sleep, and aggressive treatment of infections. Unfortunately, while still a child her lungs were colonized with B. cepacia, a resistant bacteria ‘superbug’ which makes transplantation highly risky and hence leads to most centers to not accept CF patients onto their wait lists. Ultimately, University of Pittsburgh does accept Mallory as a transplant candidate, although her health insurance puts up every road block possible to her receiving care. 

Mallory Smith was extraordinarily accomplished – she graduated from Stanford University Phi Beta Kappa, and became an editor and freelance writer. She was also deeply engaged with life and others; she was grateful for her loving, devoted family, and she developed close, fierce friendships within the CF community, among classmates, and eventually, she fell in love. 

She resists being called ‘an inspiration.’ She writes: “I’m not an inspiration. I’m just a person, grounded in compassion, striving to achieve empathy and wanting to make my way with goodness and grace.” (p. 171) She marvels at the miracle of life: “Our existence is the result of stars exploding, solar systems forming. Our Earth having an environment hospitable to life, and then, finally, millions of highly improvable events accumulating over millions of years to bring us, a capable and conscious bag of stardust, to the here and now.” (p 111) Her memoir is a story of living and dying from CF, but it is also an inside look at the brief life of young gifted writer.

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The Faraway Nearby

Solnit, Rebecca

Last Updated: Aug-09-2019
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Collection (Short Stories)

Summary:

Solnit dares the reader to categorize her book. Autobiography, memoir, travelogue, story collection, history, meditations, and pathography could fit. Common to all the categories and subjects covered is storytelling. “It’s all in the telling… and to be without a story is to be lost in the vastness of the world,” Solnit says in book’s opening. Storytelling can bring what is geographically faraway emotionally nearby.  

Solnit’s first and last stories lay the foundation for the others in between. Both center on the hundred pounds of apricots she received from one of her brothers who was getting their mother’s house ready for sale when dementia made it impossible for her to live alone. Solnit saw “the apricots as an exhortation to tell of the time that began with their arrival, and so the stories concern the time from when they arrived onward” (p. 240). Solnit considers this time when her mother’s dementia is worsening, an “emergency,” but in this instance, she conceives emergency as “an accelerated phase of life, a point at which change is begotten, a little like a crisis” (p. 250). The book to her, she says, is “a history of an emergency and the stories that kept me company then” (p. 249). 

The topics covered during this emergency are many and varied, related and unrelated. Just some of them are: her mother’s dementia, her cancer, her friend’s cancer, leprosy, Che Guevara as physician and revolutionary, Iceland, the Arctic, Mary Shelley’s Frankenstein, Buddhism, and cannibalism. In general terms, illness, pain, empathy, fairytales, and reading and writing are considered. Some of these topics are intertwined and some stand alone. 
 

The book is organized into thirteen numbered “stories.” Each has a one-word title. The titles of the first five stories are the same as the last five in reverse order, i.e., the first and last stories are both called “Apricots.” They are arranged on the table of contents page to form the shape of a bell curve that has been rotated 90 degrees with the apex of the rotated curve comprising the stories, “Wound,” Knot,” and “Unwound.” Threads run through the stories, and perhaps Solnit is telling us the story threads running through the first six stories are wound into a knot and then unwound in stories running through the last six of them. This structure may be more grist for people interested in how literature can be structured than for people interested in the insights into illness experiences literary nonfiction can provide.  
 

Not among the list of stories is one that is printed as a single line running along the bottom of each page in the book. It’s a story is about stories running along side the other stories. In an interview printed in the 8 August 2013 issue of Harper’s Magazine, Solnit said she used this form in part to 
invite“readers to decide how to read a book that has two narratives running parallel to each other; the thread can be read before, during, or after.” 

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Annotated by:
Kohn, Martin

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

About 20 Years ago, Linda Clarke, writer, professional storyteller and bioethics consultant was a neurosurgery patient of a colleague, Michael Cusimano at St. Michael's hospital in Toronto Canada. What was a distant relationship turned into one that was much closer. 10 years ago, Linda and Michael had a dialogue about recounting the story of her surgery and their relationship together. Linda became the "architect" of their project-- and they became co-authors in 2019 of In Two Voices: A Patient and a Neurosurgeon Tell their Story. The result is a lyrical co-memoir-- at times riveting, at other times sobering of their shared experience. What is probed goes much deeper than the facts, exposing the actors involved, their lives outside of their callings, their upbringing, and, most importantly, their differing interpretations of an important event during the surgery that only came to full light during the writing process. 

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Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

There are 46 poems in this volume (the author's first full-length collection), divided into three parts--the poems in the second section are in memory of women who have died of inflammatory breast cancer, the same disease that claimed the life of the author in August, 2018, when she was forty-nine-years old.  Diagnosed in 2004 during her pregnancy, Anya waited until after her son Noah was born to begin cancer treatment.  These poems, published in 2010, begin in images of her domestic life and her family, move forward to her cancer diagnosis (p. 17: "Biopsy"), and progress to examine, in poems that balance beauty and pain, what it is like to live with the knowledge of early death.  This awareness imparts a crystalline honesty and urgency to every poem. 

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Summary:

A psychiatrist and PTSD (post-traumatic stress disorder) specialist, Dr. Shaili Jain has written a book on PTSD and its many angles, from diagnosis to treatment to a larger perspective on cultural and historic influences on the development of traumatic stress. She weaves the story of her own family’s experience with the Partition of India and Pakistan in 1947, particularly its effect on her father and grandparents, as a way to consider the effect of trauma on family, but also how those traumas become ‘unspeakable.’  

A brief but effective introduction outlines the seven parts of the book:
1. Discovering Traumatic Stress: historical perspective and the changing language to describe the effects of trauma.
2. The Brain: the physiologic and psychological underpinnings of PTSD, including effects on memory formation and retrieval.
3. The Body:  such as addiction, cardiac effects and concerns at different stages of life.
4. Quality of Life: domestic and sexual violence, socioeconomic factors.
5. Treating Traumatic Stress: programs, treatment strategies and psychopharmacology.
6. Our World on Trauma: global health, large scale tragedy, terror and war.
7. A New Era: An Ounce of Prevention: resilience, accessibility of care including early and preventative care. 

Additionally, almost 100 pages of notes, glossary, resources and an index provide an easy way to further explore, to use the book to look up specific topics, and underscore the heavily researched nature of the text.   The book is eminently readable, with numerous, well-placed stories of patient encounters and particular experiences and manifestations of PTSD.  These stories are illustrative of the concepts Jain ably explains. However, they also provide an insider’s view of what happens in the consulting room.  In the prologue, Jain describes a young Afghanistan War veteran, who has been hospitalized after a violent outbreak at a birthday party: “Josh’s PTSD was fresh, florid, and untreated…. His earlier poise caves in to reality, and his face falls to anguish.” (p. xvi) We are in the room, listening to the patient, witnessing the tears of the medical student, glimpsing the attending psychiatrist’s response, and relating to Jain, as a psychiatry chief resident, as she understands that the individual before her, even as he shows classic signs of traumatic stress, remains an individual, a person in need of care.   

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Scar is a powerful, thoughtful, and moving book, part memoir about the author’s illness across some 30 years, part history of depression and its treatment and part essay to evoke cultural and personal values about sickness, suffering, health, and death. Cregan, a gifted stylist herself, draws on literature that deals with human suffering, mortality, and wisdom.  She frankly describes her sorrows and hopes, the death of her baby, her attempts to kill herself, and her survival today with many blessings.   
           
The title refers to a scar on her neck, a result of her effort to cut her throat with a piece of glass so that she would die. This attempt, in a hospital, reflects the depth of her illness and the failure of her caregivers to prevent it. Her book explores the complexity and variety of mental patients and the range of medical responses—some useful, some not—to  treat them. Writing as a survivor, she draws on her journal, hospital records, emails, interviews, and more; she is part journalist, detective, archivist, and forensic pathologist—as if doing an autopsy on the suicide she attempted.
 
Ch. 1
What Happened describes the birth and immediate death of her daughter Anna and her descent into depression and initial hospitalization.

Ch. 2
What Happened Next discusses mental hospitals and her perceptions of being a patient in one. A dramatic paragraph describes her cutting her throat (p. 51).

Ch. 3
How to Save a Life presents electroconvulsive therapy (ECT), from the jarring images of “One Flew Over the Cuckoo’s Nest” to her own experience of some 17 treatments; she reports that these helped in recovery.

Ch. 4
The Paradise of Bedlams gives a history of mental hospitals. She is hospitalized three months, “a prisoner,” in her term.

Ch. 5
Where Do the Dead Go? explores the dilemmas of the living as they mourn the deaths of people they love, including approaches from Judaism and Christianity. Mary has nightmares about her lost baby. She discusses Freud, Rilke, T. S. Eliot and others. She buries Anna’s ashes.

Ch. 6
Early Blues discusses modern attempts of science and the pharmaceutical industry to create drugs for mental illnesses, with influences from psychodynamic and biological concepts.

Ch. 7
The Promise of Prozac discusses that famous (notorious?) drug; she takes it on and off while working on her PhD, then other drugs as they became available.

Ch. 8
No Feeling Is Final sums up many themes.  She’s in her late 30s, remarried, and trying to conceive. After IVF, she’s pregnant. Baby Luke is born. She understands that the scar on her neck has an analogue with Odysseus’ scar on his leg: a symbol of survival through hard, even desperate times, for her a “double trauma: the loss of my child, the loss of myself”  (p. 243).  

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