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