Showing 71 - 80 of 879 annotations tagged with the keyword "Patient Experience"

States of Grace

Lipman, Mark; Cohen, Helen

Last Updated: Jan-24-2017
Annotated by:
Grogan, Katie

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

States of Grace follows Dr. Grace Dammann, a pioneering HIV/AIDS physician, as she navigates life following a catastrophic motor vehicle accident that leaves her severely physically disabled. Before the accident Grace was a devoted caregiver at work and at home. She was the co-founder of one of the first HIV/AIDS clinics for socioeconomically disadvantaged patients at San Francisco’s Laguna Honda Hospital, honored for her work by the Dalai Lama with a 2005 Unsung Heroes of Compassion Award. She was also the primary breadwinner and parent in her family with partner Nancy "Fu" Schroeder and adopted daughter Sabrina, born with cerebral palsy and HIV. During a routine commute across the Golden Gate Bridge in May 2008, Grace was struck head-on by a car that veered across the divide.  She miraculously survived—her mind intact, her body devastated. She endured a prolonged coma, innumerable surgeries, and a marathon of rehabilitation. The documentary picks up Grace’s story when she is finally discharged for good. She returns home to acclimate to a radically altered life, one where she is wheelchair-bound and dependent on others for simple tasks of daily living. The film captures the rippling effects of the accident on all dimensions of Grace’s life—personal, professional, psychological, spiritual, and economic—focusing especially on how Grace’s disability turns the family dynamic on its head. Fu becomes the primary caregiver to both Grace and Sabrina, Grace becomes a care-receiver, and as Grace describes “Sabrina’s position in the family [is] radically upgraded by the accident. She is so much more able-bodied than I am.” We witness her frustrations with the limitations of her paralyzed body and see her, at one point, arguing with Fu about her right to die if she continues to be so impaired. Some of Grace’s ultimate goals (to walk again, to dance again, to surf again) remain unattainable at the film's conclusion, but she sets and exceeds new ones. Grace “comes out” as a disabled person in medicine, returning to Laguna Honda Hospital as its first wheelchair-bound physician, where she is appointed Medical Director of the Pain Clinic. She resumes the caregiver role, but with an intimate knowledge of the lived experience of pain, suffering, and disability.

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The Wilderness

Harvey, Samantha

Last Updated: Dec-13-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Jake Jameson is an architect who came of age in immediate post World War II London. He grew up in “the wilderness” of the English moors and peat bogs far from London. He returns to this wilderness with a wife and an infant son, and to where his mother, a childhood friend, and many memories still live. We read about his successful career, his Jewish mother and her flight from her native Austria, his marriage to Helen and her unexpected death after about 30 years of marriage, his infidelities, his son’s incarceration in a prison he designed, his daughter’s death as a young child, and how eventually the wilderness he lived in moved from the moors to his brain. We don’t learn all of this easily because it comes in one form through Jake’s damaged memory and in another form through the tellings of more reliable witnesses. We are left in our own confused state about certain parts of story until the corrections and clarifications come later in the book. For example, we can go far into the novel thinking that Helen could have died from falling from a cherry tree until we learn near the very end that she died from a stroke, probably.

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The Wound Dresser

Coulehan, Jack

Last Updated: Nov-23-2016
Annotated by:
Shafer, Audrey

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The collection is prefaced and named for a poem by Walt Whitman, The Wound Dresser, annotated in this database by Jack Coulehan. In “On Reading Walt Whitman’s ‘The Wound Dresser’” Coulehan sees Whitman as a nurse tending the Civil War wounded, and, while using some of the words and language of Whitman’s poem, imagines himself moving forward in that created space of caring for patients: “You remain / tinkering at your soldier’s side, as I step / to the next cot and the cot after that.” (p. ix) The poem introduces us to all the ‘cots’ of the book – where we step from patient to patient, through history and geography, and through the journey of medical training.   The book is comprised of 4 sections without overt explanation, although there are 4 pages of Notes at the end of the book with information about select individual poems. In general, the themes of the sections can be described as: 1.) clinical care of individual patients and medical training; 2.) reflections on historical medical cases, reported anecdotes or past literary references; 3.) meditations on geographically distinct episodes – either places of travel or news items; and 4.) family memoir, personal history and the passage of time.   Many of the poems have been previously published and a few are revised from an earlier chapbook. Notable among the latter is “McGonigle’s Foot” (pp 42-3) from section 2, wherein an event in Philadelphia, 1862 – well after the successful public demonstration of anesthesia was reported and the practice widely disseminated, a drunk Irishman was deemed unworthy of receiving an anesthetic. Although it is easy to look back and critique past prejudices, Coulehan’s poem teaches us to examine current prejudices, bias and discrimination in the provision of healthcare choices, pain relief and access to care.   There are many gems in these 72 poems. Coulehan has an acute sensibility about the variety of human conditions he has the privilege to encounter in medical training and clinical practice. However, one of the standouts for me was “Cesium 137” based on a news report of children finding an abandoned radiotherapy source (cesium) in Goiania Brazil, playing with the glowing find and suffering acute radiation poisoning. He writes: “the cairn of their small lives / burst open…their bodies vacillate and weaken / hour by hour, consumed by innocence / and radiant desire.” (p. 68).   Following another poem inspired by Whitman, Coulehan concludes the collection with a sonnet “Retrospective.” He chronicles a 40-year career along with physical aging, memories of medical training “etched in myelin,” and the search for connection across that span of career including, “those he hurt, the woman / he killed with morphine, more than a few he saved.” Ultimately, he relies on hope with fitting understatement: “His ally, hope, will have to do.” (p. 97)

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The Kraken

Tennyson, Alfred

Last Updated: Oct-31-2016
Annotated by:
Clark, Mark

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

This Petrarchan sonnet of 15 lines begins as a lyric contemplation of the Norwegian sea-beast of Scandinavian mythology; but it evolves into an association of the beast with other mythological representations of invisible yet vast, destructive forces that would devour from below or swallow sojourners on the seas of everyday life.  In a broader sense, then, and by means of the mythological representation, the poem may be understood as a contemplation of ideology and blind allegiances to the status quo—which lose their destructive powers only when they are recognized for what they are.

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Summary:

This monograph is an important contribution—along with the Health Humanities Reader (2014)—to the burgeoning field of health humanities, a new academic field and the presumed replacement for (and expansion of) medical humanities. While the medical humanities included philosophy, literature, religion, and history, health humanities includes many more disciplines, and the creative arts.
This book is dense with theory and abstraction, but it imaginatively and intelligently promotes the notion that health is a larger and more useful concept than disease, which dominates and limits standard medicine. 

Five authors are listed for the book as a whole; none are attributed specifically to any of the eight chapters.
 
The first chapter “Health Humanities” promotes health humanities as an expansion of medical humanities to include more people (including unpaid caregivers and patients), social and national well-being, and the arts, such as dance, music, and visual art. We need to consider wider ranges of meaning, agency, and patients’ varying life stories. Unpaid caregivers have been neglected, even though “the majority of healthcare as it is practiced, is nonmedical” (p. 13). Medicine per se has been too science-based and too disease oriented, but critical theory and the arts can be “enabler[s] of health and well-being” (p. 19) with many applications to hospitals, clinics, homes, and neighborhoods.

“Anthropology and the Study of Culture” describes a wide range of inquiry, both worldwide and throughout human time, including rituals, conceptions of disease, health, death, and impacts for patients. Some cultures believe in spirit possession. The Chinese have worked with qi (life energy) for millennia. Cultural studies look at popular media, spiritual perspectives, also local and subcultural values.
 
“Applied Literature” discusses pathographies, including mental illness (for example, self-harm); it reviews concepts from Rita Charon and describes how reading groups can promote well-being. Literature expands our understanding of humans well beyond the biomedical gaze. Closely related, “Narrative and Applied Linguistics” reviews notions from Osler, Barthes, Bruner, Propp, Frank, and others. Patients want, beyond technical expertise, healthcare personnel who will help them co-create an enabling narrative. New techniques in linguistics include analysis of a corpus of usage, for example, teen language, thereby gaining approaches to young patients who cut themselves.

At 23 pages, the longest chapter is “Performing Arts and the Aesthetics of Health.” It posits that all arts are uniquely human because they are relational, aesthetic, and temporal (with time in a kairos sense, not just chronos). The arts fit into health practices, which also share the same three qualities. The arts promote coherence, agency, communication, expression, and social wellbeing, traits that are described specifically in music, dance, and drama. Similarly, the next chapter “Visual Art and Transformation,” promotes this particular art, whether elitist or popular, as communicative and transformative. The making of art can be healing. 

“Practice Based Evidence: Delivering Humanities into Healthcare” argues against Evidence Based Practice and its limitations. Instead of Randomized Controlled Trials, smaller, more qualitative studies may be more accurate and useful. Practice Based Evidence (and feminist and postmodern approaches) all create wider and deeper notions of validity.

“Creative Practice as Mutual Recovery” suggests that caregivers, whether professional or lay, also find healing as they deliver care.

In “Concluding Remarks” we read, again, that  “the majority of health care and the generation of health and well-being is non-medical” (p. 153). Medicine and medical humanities are “too narrow a bandwidth,” but health humanities can support all caregivers, various institutions (including schools), self-care, and complementary medicine.   

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Tell

Itani, Frances

Last Updated: Sep-22-2016
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Kenan Oak returns from World War I to a small Ontario town. He is virtually unable to speak and dares not venture from his home. Adopted by a reclusive uncle at an early age, he has no immediate family but his wife, Tressa, who loves him and accepts his disability with good grace. They have been trying to have a child without success, and the glimmers of Kenan’s recovery are dauntingly few and faint. Slowly with the help of his uncle Am, he begins to go out at night for walks in the woods and skating on the ice of the lake.  

Am and his wife Maggie have a strained marriage. She loves to sing and once aspired to a career in music, but instead she opted for Am and a farm—although now they live in town. Lukas, a gifted new musician arrives to direct the choir; he is a postwar immigrant from an unnamed European country, possibly Germany. He notices her talent and encourages her to sing solo at the upcoming New Year’s concert. Unused to the attention, she is captivated by him, his mystique, his appreciation of her, and the return of joy through song. They have an affair, which is discovered by Am.  

Well into the story, it emerges that Am and Maggie had lost two children to diphtheria, and this trauma is at the heart of their marital strife. It is why they left their farm and have grown apart.  But Maggie imposed an edict of silence on this exquisitely painful past. In contrast, Tressa slowly encourages her silent husband to tell—by inventing stories for him and letting him revise.  His adoptive uncle gives him a postage-stamp sized photograph of his nameless mother and grandmother; together they construct a story.
 

Maggie falls pregnant with Lukas’s baby. She goes away to have the child but Am cannot accept it. Compounding Maggie’s woe, she stays with Am—for all their strife, they are bound in their loss. She allows Tressa and Kenan to adopt her beloved baby.  

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Tithonus

Tennyson, Alfred

Last Updated: Jul-28-2016
Annotated by:
Clark, Mark

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Tithonus” is a dramatic monologue that imagines the once handsome, magnificent Trojan prince to be well-advanced in an unfortunate state brought about by negligent gods and his own lack of foresight.  Exultant over the blessings of his youth, he’d asked Aurora, goddess of the dawn, for eternal life, and she had obtained Zeus’s permission to grant the request.  But Tithonus had failed to ask for eternal youth with his immortality—and neither Aurora nor Zeus had managed to recognize that this feature of the request might be important—so that Tithonus spends eternity growing increasingly decrepit.  In Tennyson’s poem, Tithonus addresses Aurora, hoping he might persuade her to reassign him his mortal status and allow him to die.

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Deafening

Itani, Frances

Last Updated: Jul-24-2016
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Born in 1894, Grania becomes deaf following scarlet fever at the age of two. Her mother never quite recovers from misplaced guilt over this outcome and is withdrawn. But Grania is well loved by the whole family, who run a hotel in a small town. Her older sister and their Irish-born grandmother see the child's intelligence and find ways to communicate with her by signs and words; they urge the parents to send her to a special school.By age nine, Grania is sent to the famous School for the Deaf in Belleville Ontario, founded by Alexander Graham Bell. Although the school is only a short distance from her home on the north shore of Lake Ontario, the child is not allowed to return for nine long months. At first she is overwhelmed with homesickness, but soon she finds kindred spirits among the other students and teachers and adapts to the life of the institution.

By 1915, her studies complete, Grania works at the school. There, she meets her future husband, Jim, a hearing man who is assistant to the town doctor. They marry, but only two weeks later, Jim leaves to serve as a stretcher bearer in the war in Europe. Fear and death haunt the people at home and abroad for years. Jim writes what little he is allowed of the horror and danger around him, always promising to return. Grania waits and writes too, slowly growing hopeless and angry, as devastating telegrams arrive one after the other.Her sister copes with the return of a grievously disfigured husband, wounded more in mind than in body. In late 1918, Grania falls ill in the influenza epidemic and is delirious for weeks. When she recovers, frail and bald, she learns of the loss of her beloved grandmother who died of the fever caught by nursing her. At the same moment she hears of the war's end and begins to believe again in hope.

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Summary:

The aim of these reflections on uncertainty in medicine is not to discredit evidence-based medicine or to incite suspicion of the careful and caring processes by which most clinicians arrive at the advice they give.  Rather it is to change conversations among practitioners and between them and their patients in such a way as to raise everyone’s tolerance for the inevitable ambiguities and uncertainties we live with.  If the public were more aware of the basic rules of mathematical probabilities, how statisticians understand the term “significance,” and of how much changes when one new variable is taken into account—when a new medication with multiple possible side-effects is added to the mix, for instance—they might, Hatch argues, be less inclined to insist on specific predictions.  He goes on to suggest that there is something to be gained from the challenge of living without the solid ground of assurances.  When we recognize the need to make decisions with incomplete information (a condition that seems, after all, to be our common lot) we may refocus on the moment we’re in and see its peculiar possibilities. Changing the conversation requires a critical look at medical education which, Hatch observes, “measures a certain type of knowledge essential to medical practice, but it consequently engenders a conception of medicine best described as overly certain . . . .” 

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We Are Not Ourselves

Thomas, Matthew

Last Updated: Jun-20-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

In 1951, Eileen Tumulty, the novel’s main character, was nine years old and living with her Irish immigrant parents in the Woodside section of Queens, New York. The novel follows Eileen straight through the next 60 years, but concentrates on the years covering the time of her husband’s Alzheimer’s disease.    

Eileen was forced to learn how to manage a household at a very young age when first her mother was kept in a hospital for 8 months after a hysterectomy, and then again when her mother became incapacitated by alcoholism. Eileen had reason to think this life was her destiny until she accompanied her father to a better part of Queens. There she saw “places…that contained more happiness than ordinary places did.” She concluded, “unless you knew that such places existed, you might be content to stay where you were.” (pp. 15-16) Eileen’s ambition was ignited. While continuing to manage the household and care for her mother, she does well in school, becomes a nurse, and eventually moves up the nursing management at various hospitals.  

Eileen’s ambitions encompassed ideas on her eventual mate. She chooses Ed Leary despite hoping for someone who was not quite so Irish and not quite so much of the same place. Ed was a promising neuroscience graduate student who she thought could be a high achiever with the right motivation: “If there was anything she could help him with, it was thinking big.” (p. 97) Her motivation was not enough and neither were the many offers he received from life science companies. He became a professor at a local community college. He had a passion for teaching students who attend community colleges and he could never see himself anywhere else—for love or money. Ed’s intransigence frustrated Eileen, but she accepted it and plowed ahead. She studied the possible ways of escaping the old neighborhood and also delivered a son she thought she’d never have after years of futile efforts.  

It doesn’t go smoothly. While she is getting surer of where they would go, Ed begins to exhibit disconcerting behaviors. For them to live in Bronxville, Eileen will have to accept a house that needs a lot of money and attention to rehabilitate. The remainder of the story is about how Eileen simultaneously manages Ed’s rapid deterioration from what eventually is diagnosed as Alzheimer’s disease, her job requirements, and a son progressing from adolescence through college.  

We Are Not Ourselves
touches on many of the aspects involved in prolonged illness including the daily struggles managing the care of someone with progressive dementia, complexities of health care delivery systems, frustrations with byzantine health care coverage, and threats to relationships among the individual family members with one another, and the grace that can manifest during the bleakest moments. The author does not dwell on all these issues, but gives them enough attention so that their effects will be recognizable to many readers who have experienced them. In doing so, he was able to draw from his own experiences with his father who was stricken with early onset Alzheimer’s disease.

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