Showing 41 - 50 of 274 annotations tagged with the keyword "Chronic Illness/Chronic Disease"
According to the editor’s introduction, this collection is based on the AMSA (American Medical Student Association) assertion that the physician must be a humanist, a communicator and an advocate as well as a scientist. To support these and related commitments, it offers essays that demonstrate how and under what circumstances the introduction of creative arts into the lives of professional care providers and their patients and families may be achieved. Included in some essays are general themes, while in others there are very detailed descriptions of methodology. Others utilize more standard research designs and outcomes.
What creative arts are included in the discussions? Visual arts, drama, music, and story-telling stand out in terms of potential and, in some cases, already demonstrated applicability to a medical practice. Some of the essays propose art forms that can be translated into a useful frame for health practitioners, artists and/or patients and their families.
Some essays include assessment of research projects or various designs of methodologies for using creative art in the medial professional education environment. Others rely on personal experiences using the arts in the learning and teaching of skills such as communication with peers, patients, family and friends.
The volume is divided into four sections. The first cluster of essays considers using the arts to illustrate empathy in encounters among providers and recipients of health care services. This is demonstrated in a variety of settings as disparate as end-of-life situations and dental training programs.
The second section includes examples of drama, music and drawing as part of caring for caregivers. Through group settings and peer support, art serves as a stress reducer for those whose work involves the highly emotional situations health professionals often encounter.
Section three explains and demonstrates the narrative reflective process, in which experiences and stories are shared among those persons involved as patients, family members and caregivers. The special situation of interviews in pediatrics is given attention in one portion of this section.
The final section addresses the question of using art to explore troublesome issues that demand change or special attention. Included are ethical dilemmas and the need for health professions to build bridges to the community at large.
Five Days at Memorial is the book length expansion of the New York Times Sunday Magazine article that the author, a Pulitzer Prize-winning physician-journalist, published in 2009. The book, the result of years of research and literally hundreds of interviews, chronicles the five days (August 28 to September 1, 2005) during which the medical staff remaining at Memorial Hospital in New Orleans tried to care for the patients -- over a hundred of them stranded, like the staff, in a hospital without water or electricity --following the flooding wrought by Hurricane Katrina.
After an 8 page prologue, the book is divided into two sections, "Deadly Choices" (228pp, the narrative of those five days) and "Reckoning" (256pp, the legal battles over the injections of midazolam (a sedative) and morphine by some of those staff and prosecuted as homicide -- what others called "euthanasia.") "Deadly Choices" relates almost hourly the five days inside Memorial from the viewpoint of patients, patients' relatives, physicians, nurses, administrators of Memorial, Tenet (the holding company owning and running Memorial) and LifeCare -- the long-term care area within Memorial devoted to the care of terminally ill and debilitated patients -- owned by a separate company. Ethical and legal questions of triage, DNR, record-keeping, accountability, communication (primarily the failure thereof) and leadership are on almost every page. At the heart of this book, however, is the mystery of the unexplained deaths of so many patients during those five days. (On September 11, 2005, a disaster mortuary team recovered 45 bodies from many different places in Memorial, page 234). The crux of the mystery of these deaths is the manner in which nine in particular died in the beleaguered hospital on the fifth and last day when, paradoxically, relief had become real and effective and inclusive, seemingly obviating such injections.
The final pages of "Reckoning" deal with the fallout - historical, ethical, political and medical -- and current events relevant to these five days and the almost two years following. (The final verdict of not guilty -- the actual wording was "Not a true bill" since it was a grand jury declining to indict the one physician, Anna Pou, and the two nurses, Cheri Landry and Lori Budo -- was rendered on July 24, 2007). There are a map of Memorial Hospital and a cast of characters at the front of the book and extensive notes, bibliography and index at the end.
Summary:Damon Weber's proud father, Doron, has written a searing memoir that enfolds a story of parental love and loss into a medical exposé. By the time Damon turned four, he had two open-heart surgeries to correct a congenital malformation that affected circulation to his lungs. His parents were led to believe that after the surgeries, their effervescent, sociable, academically and artistically talented son was set for life. However, as Damon turned 12, they became concerned about what his father calls "his unsprung height," his shortness of breath, and a strange protrusion in his abdomen (40). Returning to his attending physician, they were surprised that she withheld information from them about a condition known as PLE (protein-losing entropy), which can manifest months or years after the kind of surgery (Fontan) their son underwent. PLE enlarges the liver and allows proteins to leak from the intestines. Without adequate protein, Damon's body could not grow. His father worried that they might have passed the established window of opportunity to treat the complication.
Summary:The author of this long, compassionate and often startling treatise on identity interviewed over three hundred families to elicit stories about raising exceptional children, stories that also come from these exceptional children ('exceptional' is the term chosen to describe the children in the author's material about the book).
Summary:First published in France as a six-volume series from 1996-2003, this narrative is often referred to as an autobiographical graphic novel, but it is more accurately described as a graphic memoir. The author, born Pierre-François Beauchard, tells and draws the story of his family's life with the author's older brother, Jean-Christophe, whom we meet on the first page, in the year 1994: "It takes a moment for me to recognize the guy who just walked in. It's my brother . . . The back of his head is bald, from all the times he's fallen. He's enormously bloated from medication and lack of exercise." Flashback to 1964 when the author is five years old and his seven-year-old brother begins to have frequent grand mal epilepsy seizures. There follows the parents' mostly fruitless search for treatment to control the seizures, including: possible brain surgery which Jean-Christophe refuses in favor of an attempt at zen macrobiotics (this seems to work for six-months), consultation with a psychic, Swedenborgian spiritualism, magnetism, alchemy, exorcism by a priest, psychiatry (a different form of exorcism!).
Summary:"A Diary Without Dates" is Enid Bagnold's World War I memoir of her experiences over roughly a year and a half as a member of the V.A.D. (Voluntary Aid Detachment), or what we would today call a nurse's aide. Assisting the Sisters (both lay and religious nurses), the author attended to the day-to-day (mostly non-clinical) needs of wounded soldiers (almost entirely British) recovering from often horrific wounds in the Royal Herbert Hospital in Woolwich, 8 miles southeast of London. These poor men often stayed in the Royal Herbert for many months. It is a slim volume which the author wrote at the age of 28 and published in 1918. Divided into three arbitrary divisions ("Outside the Glass Doors", "Inside the Glass Doors", "'The Boys ...'") of roughly equal content (the last devotes, on the whole, more detail to individual "Tommies", referred to as "The Boys"), the book recounts the author's observations and fairly critical views of the relationships between nurses, physicians, V.A.D's, and visitors. Apparently the book was not well received by war authorities, leading to Bagnold's dismissal from her position.
Summary:The writer opens the volume by discussing the ways in which the poetry created by the affected person differs from the narrative form of describing the experience of illness—the classic “pathography.” The essays in the collection demonstrate, by using examples, some of the unique qualities of the poem as an alternative to a prose narrative progression as well as the ambiguities introduced by the language of poetry. The discussions of the poetry presented provide the reader with guidance to the acceptance of poems in their “own terms” in order to understand the poet’s internal sense of the meaning of illness. By allowing new and different information to become available for consideration the careful reader may gain new insights into the lives of those who are ill or disabled.
Summary:Black Bag Moon is a collection (one is tempted to say a "mixed black bag") of short stories (but not clearly "short fictions" - clarified below) about medical patients. The reputed authors are identified as these patients' physicians, who recount these stories in first person. By my math, there are nine authors who narrate stories about 37 patients in 29 chapters. Most chapters have two patients in unrelated stories that sometimes share a theme. Several of the authors know each other as colleagues and two are a married medical couple. Most of the stories occur in Australia or New Zealand but some are in places are as far flung as England, Scotland and unidentified, possibly fictional, islands in the South Pacific. The practitioners are, for the most part, family physicians and care for people of all ages, providing care for everything from breast masses to congestive heart failure to trauma to occupational health to - almost overwhelmingly - mental illness threatening severe violence. The last - serious mental illness - is, as are all the patients and their illnesses in this volume, almost exotically different from anything most readers of this database are likely to encounter as health care providers or readers. Think Crocodile Dundee or perhaps television's Dr. Quinn or ‘Doc' Adams of Gunsmoke. Or all the above but in the late 20th Century Outback.
At five years old, Willow O’Keefe has lived a life rich in love and exceptional learning; she reads beyond her years and has memorized a startling compendium of unusual facts. She has also sustained over 50 broken bones, two of them in utero. She has osteogenesis imperfecta, a congenital defect in the body’s production of type 1 collagen that leaves bones very brittle. People with the disease generally suffer many fractures and often other conditions—exceptionally small stature, hearing loss, and bowed limbs. Willow’s parents and older sister have organized their lives for five years around protecting her from damage and helping her heal from her many broken bones. Though Amelia, her older sister, loves Willow, her parents’, Charlotte and Sean’s, intense focus on Willow’s condition often leaves her jealous and disgruntled. Things go from bad to worse when their mother learns that a lawsuit for “wrongful birth” is legal in New Hampshire, and could bring them the money they need to cover Willow’s many medical expenses. Such a step, however, means losing a best friend, since the obstetrician who oversaw Charlotte’s pregnancy and Willow’s birth, and who ostensibly overlooked signs of the disease and failed to warn the parents, has been Charlotte’s best friend for years. A “wrongful birth” suit is based on the claim that medical information about a congenital defect was withheld that might have been grounds for a decision to abort the pregnancy. Though Charlotte insists this drastic step is the best thing they can do to insure a secure future for Willow, Sean finds it repugnant enough finally to leave home. It is clear that even a win will be a pyrrhic victory, and indeed, the outcome is ambiguous, costly, and life-changing for everyone concerned.
This collection of 16 short stories focuses on doctors and patients in San Francisco, where a wide variety of wealth and culture impact the delivery of medical care. Further, there are many restrictions—financial, bureaucratic, ethical, and legal —that limit what doctors can do, especially in cases of patients near death.
The author, Louise Aronson, is a geriatrician who knows this terrain very well, having trained in San Francisco and worked as a physician there. A skilled writer and close observer, she has created dramatic and often funny stories that reveal social and bioethical complexity. About half the stories describe end-of-life issues for the aged and the dilemmas for their physicians and families.
In ‘The Promise,” Dr. Westphall orders comfort care only for an elderly patient who has suffered a massive stroke, but a hospital gives full treatment because there was no advance directive and the daughter told the attending to do “what he thought best.”
When Dr. Westphall sees this barely functioning patient in a skilled nursing facility seven months later, he tenderly washes her face and hair—although the text teases us that he might have been prepared to kill her.
In “Giving Good Death,” a doctor is in jail charged with murder; he has fulfilled the request of Consuela, a Parkinson’s patient, to help her die. When it appears that she may have died for other reasons, he is released, his life “ruined.” He leaves San Francisco, and, we surmise, medicine. In three other stories, doctors also leave the profession: the cumulative stresses of work and family and/or a sense that it’s not the right path bring them to that choice.
On the other hand, one of the longer pieces “Becoming a Doctor” celebrates the profession, despite all the rigors of training including sexism against women.
The stories bring multicultural insights; we read of people from China, Cambodia, Latin America, India, Russia, and the Philippines. Some are African-American; some Jewish, some gay. These different backgrounds color notions of health, death, and medical care. There are also pervasive issues of poverty and, at another extreme, professionalism that is hyper-rational and heartless.
Indeed, a recurring theme is care and love for people, no matter their background or current health status. A surgeon realizes (regrettably too late) that the secret of medical care is “caring for the patient—for anyone—just a little. Enough, but not too much” (p. 135).