Showing 61 - 70 of 833 annotations tagged with the keyword "Caregivers"
Summary:Atul Gawande’s Being Mortal is both ambitious and synthetic, qualities that well suit his difficult subject, death. In Western culture, there are taboos against death because it fits neither into post-Enlightenment notions of progress and perfection nor into medical notions of control, even domination of human biology. A surgeon and an investigator, Gawande draws on his patients, his family, and travels to various hospitals and other caregiving places in order to confront death and see how approaches such as hospice and palliative care can improve our understanding, acceptance, and preparation for death.
Summary:Carol Levine began a roiling odyssey as a caregiver when a car accident left her husband paralyzed and in need of 24-hour care. She regards her husband’s survival as “a testament to one of American medicine's major successes — saving the lives of trauma patients.” But once he returned to their home, Levine encountered a healthcare system that was fragmented, chaotic, and inequitable. Unprepared to address chronic care, it remained oblivious to her needs as her husband’s primary medical “provider,” as they would say. Written nine years after the accident and eight years into her care giving, Levine’s essay recounts the stress and isolation she experienced attempting to navigate that system, to perform unrelenting chores, and to sustain her employment. Her job was, after all, the source of her husband’s managed care insurance, which regularly managed to leave Levine with unpaid bills. Even her work in medical ethics and healthcare policy could not help her locate the assistance she needed to assure the well being of her husband or herself. Or of other care-giving families.
Summary:A nurse-poet well-known for her empathic descriptions of patients, Cortney Davis suddenly found herself in the hospital bed with a life-threatening condition. Although she is a masterful writer, she could not find words to capture what she experienced as a patient. Instead, she started painting her emotions—fear, suffering, and loneliness expressed through color, line, and tone. The first of 12 paintings in this pathography shows her lying naked on a white slab, not literally what happened but expressive of how vulnerable and helpless she felt. Each of the 12 paintings carries an emotional and spiritual truth—often raw and miserable. Davis accompanies each painting with a brief commentary about how and when the painting was done, explaining, for instance, why some of the figures have no facial features. But the vivid paintings speak for themselves, and they add a different way of knowing not available through words.
Summary:Bursting with Danger and Music reveals Jack Coulehan’s characteristic sensitivity to contradictions, tensions, and creative energy. The book is divided into six sections, thematically held together with such headings as “All Souls’ Day” and “Levitation.” Many of the poems are first person narrations by patients, physicians, and observers of the natural world. Sometimes the patients are near death, as in “Darkness is Gathering Me” and “Slipping Away,” where they observe their own dying without fear but with wonder and even a sense of celebration: “I’m pouring through the pores/ of this room, I’m already/ feeling the jazz and hormones begin” (p. 39). In “The Internship Sonnets,” he experiences the world of the medical intern, often scared and exhausted, who is caught between his subservient duty to the chief of medicine and his own violations of that duty, such as telling the truth to patients. Where is his primary duty? What ought he to do in these conflicting value systems?
Summary:This anthology is a sequel to Pulse: The First Year (2010). Both anthologies are comprised of postings to the website “Pulse: voices from the heart of medicine,” an online publication that sends out short poems and prose pieces every Friday. As the website subtitle suggests, the topics are from the medical world, the writing is personal (not scientific), and the writers give voice to feelings and perceptions from their direct experience as care-givers, patients, or family members of patients. All the pieces are short (typically one to five pages), usually with a tight subject focus. For example, in "Touched," Karen Myers reports how massage has helped her muscular dystrophy.
Summary:Carol Levine's anthology of stories and poems about the intimate caregiving that takes place within families and among friends and lovers reminds us that the experience of illness reaches beyond clinicians and patients. It can also touch, enrich, and exasperate the lives of those who travel with patients into what Levine calls the land of limbo. This land oddly resembles the place where some Christian theologians believe lost souls wander indefinitely between heaven and hell. For Levine the limbo of familial caregiving is an unmapped territory. In it caregivers perform seemingly endless medical, social, and psychological labors without professional training and with feelings of isolation and uncertainty. Caregiving in this modern limbo, created by contemporary medicine's capacity to extend the lives of those with chronic conditions and terminal illnesses, has become, according to Levine, "a normative experience" (1).
This story centers on Lena, an immigrant teen from Ukraine, whose entire family has been traumatized and uprooted by family deaths during a violent pogrom. Relocated to Chicago, in a tiny apartment on Bittersweet Place, the family struggles to survive in the years prior to World War I. Wineberg’s tale of disrupted life and resettlement is weighted by formidable issues that stretch beyond the ordinary range of family experiences.
Lena, the intelligent, highly observant and resilient adolescent, narrates an unvarnished tale of survival for the extended family clustered together in this strange new world, but especially for herself. While the family’s economic and financial circumstances are difficult, her own life is made worse by an unkind teacher, mean-spirited classmates, and hormonal impulses. Her uncle touches her inappropriately, a favorite uncle goes mad, a cousin dies, and her mother, who is unfamiliar with the new world setting and mores, drives her crazy.
Nevertheless, Lena is a clear-eyed survivor exhibiting a surprising toughness of character and determination. For example, her introduction to sex is far more direct than might occur with most girls of that time. In addition, when her teacher fails cruelly to support her artistic talents, she shows amazing defiance. When she discovers that her father has a beautiful female friend, undoubtedly a lover, her consideration of this circumstance does not render the crushing blow that might be expected. In retrospect she is more adult, more mature than most young women might be in each of these situations. She is a remarkable young woman with a spirited edge.
Although Dr. Helman’s untimely death did not permit a final editing by this prodigious writer, the published edition is not a book-in-progress. An Amazing Murmur of the Heart: Feeling the Patient’s Beat represents a powerful and persistent continuation of observations and themes that grew out of medical education, close observations of physicians and patients, and his studies in anthropology. All of these forge an approach to patient care that is out of the ordinary.
As his previous writings suggest, Helman is passionate about medicine but concerned, equally about the emergence of those who fail to listen and to those who might be called techno-doctors. While professing his appreciation of and attraction to the magic machine or computer, he is mindful of its absence of emotion and ambiguity. “For this post-human body is one that exists mainly in abstract, immaterial form. It is a body that has become pure information.” (p. 11)
Chapters are comprised of stories about patients and their care providers, each representing complex facets that defy precise measurement, answers and conclusions. As Helman steadily notes, the physician must be an archeologist:
Most patients present their doctors with only the broken shards of human life—the one labeled infection, disease, suffering and pain each of these shards is only a small part of a much larger picture….the doctor will have to try and reconstruct the rest. (p.66)
In general, the chapters illustrate first an initial review of medical history, and then specific patient stories. Of the two, the story is most important. “Mask of Skin,” for example, begins with an overview of skin from Vesalius to the present: largest organ, stripped bare by anatomists, penetrated by disease, later scanned and X-Rayed, tattooed, re-fitted by surgeons, etc. That said, Helman the physician-anthropologist, moves from science to specific stories about patients whose skin may cover profound experiences, psychic and otherwise, that might be overlooked by a dermatologist. Although skin is involved in each of that chapter’s stories, the willing physician must dig deeper in his observations and caring manner to make more profound discoveries.
In a chapter entitle “Healing and Curing” the author describes an old friend, a practitioner who provides advice about patient care that ”was not included in his medical texts”. Patients are more than a diagnosis dressed in clothes. Doctors must make patients “feel seen, listened to, alive”. Always patients should be regarded as people who happen to be sick. From his admired colleague Helman learned to be an attentive listener to the "tiny, trivial, almost invisible things" in patient encounters and stories. To truly heal as well as cure requires the doctor to empathise with what the patient is feeling thereby requiring both an act of imagination and of the heart. The chapter, of course, continues with with stories that illustrate the points enunciated by his colleague and accepted by his disciple.
Summary:This is a compendium of original critical essays on a wide range of topics written by a diverse group of scholars of what has traditionally been called "medical humanities." The editors argue for a change of name to "health humanities," pointing out that "medical" has a narrow frame of reference - evoking primarily the point of view of physicians and their interaction with patients, as well as the institution of biomedicine. Such a focus may exclude the myriad allied individuals and communities who work with patients and their families. The editors quote Daniel Goldberg, who notes that the health humanities should have the primary goal of "health and human flourishing rather than . . the delivery of medical care" (quoted on page 7).
In his introduction, the author summarizes the history of polio’s first appearance as an epidemic in the United States, the ensuing research, subsequent applications of new information, attempts at abatement and ultimate success in the development of preventative measures.
Embedded in the successes and failures of the research applications are the details of human interactions. Their impact on the goal of achieving near extinction of polio in America constitutes a dramatic subplot, which the historian adroitly weaves into the work.
For the reader who has only a sketchy knowledge of this important period in medical research, this history provides details of human exchanges, conflicts and resolutions necessary to bring the scientific developments to fruition. Central among the multiple struggles rests the basic disagreement between Jonas Salk and Albert Sabin, two of the most prominent scientists working against the clock to develop the most effective and safest form of immunization. Each new surge of the disease added to the urgency of the problem as well as to the question of the best solution. Salk felt strongly that the immune system should be stimulated by a killed virus preparation, while Sabin was equally convinced that only the living virus could provide this need. Each view had its own cadre of supporters and of opponents.
Funding issues also troubled those fighting the polio epidemics. The March of Dimes is credited with raising a record $55 million in the fight against polio in early 1954, becoming the first major infectious disease battle to benefit from a concerted public awareness campaign and demonstrating the power of such volunteer driven efforts to supplement public and other private funding efforts.