Showing 51 - 60 of 821 annotations tagged with the keyword "Patient Experience"
Summary:This book combines social history with personal memoir. It serves as a reflection on how the various challenges of living with chronic illness have shifted over time, and how they are still real and present for the increasing portion of the population who suffer from ills invisible to others and often hard to account for. The book's brief treatments of cultural and medical approaches to chronic illness, from ancient practices to "patients in the digital age," provide a broad perspective against which to consider current legislative, political, medical, and personal concerns for those coping with chronic illness or disability.
Summary:In this collection of essays on writers' end-of-life memoirs Berman combines a fine-tuned appreciation of literary strategies with reflections on how writers, who have defined themselves, their philosophies, their voices, and their values publicly, bring their life work to characteristic and fitting conclusions in writing about their own dying. The writers he considers cover a broad spectrum that ranges from Roland Barthes and Edward Said to Elisabeth Kübler-Ross and Tony Judt to Art Buchwald and Randy Pausch. Each essay offers insights into the writer's approaches to death and dying against the background of his or her earlier work.
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.
A Little Something is a story of a medical catastrophe for a family: at a baseball game, 10-year-old Justin is struck in the face by a foul ball. He seems OK initially, but he has a loose tooth. His father takes him to a dentist, where, left unattended, he has a drug reaction and loses consciousness. Paramedics take him to a hospital, but he does not wake up. He becomes the still center of the book; three circles form around him. The closest circle includes the attending neurologist Dr. Goldstein and, of course, his parents. His mother Kath is a pediatric physician; she follows closely the medicine involved and knows well the hospital where Justin is being treated. His father Sam is an introverted financial man; he measures everything in numbers. Their marriage is stressed even before the accident. Kath’s nurse at her clinic, Jonesie, is a steady support. Granny, a Licensed Vocational Nurse, comes to watch over Justin. In a moving scene, she bathes the unconscious boy.
A second circle includes other family and friends, the clientele of Kath’s pediatric clinic, the children, and their parents. These are largely Latino, underserved in Fort Worth, Texas, of 2001. (Kath has chosen a medical specialty that earns less money than other fields—in contrast to her money-grubbing mother, who is satirically portrayed.) Next door to the clinic is a firehouse, where Justin has visited and made friends. The blue-collar firemen are public servants who help make a community work.
A third circle is less defined but contextual for the novel: country folks, like Granny, who are not intellectual but practical. They believe in keeping going no matter what, a folk wisdom of realistic, durable hope.
For three-quarters of the novel there’s suspense about Justin’s recovery. At one brief moment, Sam is sure of a turnaround when he sees (or thinks he sees) a smile on Justin’s face. For nine days Sam and Kath experience hope, anger, exhaustion, expressed rage, confusion, and continuous uncertainty.
Finally there is “the meeting,” a gathering of the doctor, the family, Kath’s faithful clinic nurse Jonesie, and Father Red, a Catholic priest from Justin’s school. Dr. Goldstein says there is no hope for recovery and gives the medical details of Justin’s brain death, which has both anatomical and legal certainty.
Kath and Sam decide to disconnect Justin from life support and allow organ donation. When Justin must be transferred from the children’s hospital to the neighboring one, Sam carries him in his arms. A surprise ritual is an honor guard of firemen who line the path of the procession.
We read the specifics of disconnecting the vent tube, watching the heart race on the monitor, then the flat line of the still heart. Father Red reads from the Book of Common Prayer. An hour later, a helicopter takes off from the hospital with Justin’s donated heart.
An Epilogue six months later describes a Thanksgiving dinner at the firehouse. Sam and Kath are closer now, and he plans for them a trip to Hawaii. There’s has been, however, no easy “closure,” and the couple combines memories with mourning.
Summary:The author is a practicing neurosurgeon, one of only two hundred or so women in this specialty which numbers about 4,500. She was the first woman to be admitted to her neurosurgery residency program. Her father was a surgeon and she was definitely influenced by him and says that, as the oldest of four children, it was always expected that she would become a doctor; but she didn't decide for sure until partway through her second year of college.
In a dramatic monologue, Joanne traces the devastation of a familial proclivity to breast cancer through four generations of women: her grandmother Sarah; her mother; Joanne herself and her two daughters, one of whom is also Sarah.
Joanne’s mother and grandmother both died very young of breast cancer; however, many other family members vanished in the Holocaust and the number of familial cancer deaths is insufficient for her to qualify for genetic testing. Her friend Linda, also a mother of two daughters, learns too late that she carries the BRCA gene; she urges Joanne to be tested.
Tormented by not knowing and equally tormented by what should be done if the test is positive—both for herself and her daughters, she convinces a doctor to lie so that the test can be performed. It is positive; Joanne opts for bilateral preventative mastectomies. During a visit to the gravesite of her mother and grandmother, she begins to explain the genetic risk to her daughters.
The play has two characters: Ruth and Friend (who is a male doctor).
Ruth is an engaging, straight-talking quadriplegic who can zip and dance with her chin-operated wheelchair and takes delight in terrorizing medical staff both physically and verbally. She wants to write poetry and is waiting for a device to make it possible for her to use a computer. She keeps developing bedsores that threaten her life and require long admissions to the hospital before they will heal. She desperately wants to live no matter what happens, as she feels that having no mind would be worse than having no body.
Friend is a male doctor with children who is ashamed of having examined her while she was unaware. Burdened with his guilt, he asks to be her “friend.” Ruth is skeptical and runs circles around him, but eventually comes to trust him and believe in his sincerity.
She makes him a witness to her advance directive to instigate all heroic measures, as she is afraid of the kindly "ethical" and cost-effective arguments not to treat the disabled. But Ruth dies horribly from sepsis, and Friend is helpless to prevent it. She never obtains the device that would have allowed her to put her poems into printed words.
Twelve-year old Philip is admitted to the hospital for a month of nightly infusions of amphotericin, a drug used to treat severe fungal infections. Wise beyond his years, he’s been in the hospital before and is only too familiar with its routines: the "vampires" who take blood; the candy-stripers who volunteer cheerfulness.
Four nurses welcome Philip back, teasing him about his annoying but intelligent insights and promising excellent outcomes this time. The doctors are testing a wonderful new drug that should eliminate all the horrible side effects that he had experienced in the past. But the new drug does not work, and Philip passes a miserable night.
He feels sorry for his parents who are eager for him to receive the best of care; he puts on a smile for them and notices them putting on smiles for him. He tries to be brave for the doctor too, but surprises himself by voicing his opinion, finally making his physician understand that the new anti-side-effect drug does not work.
In the midst of yet another difficult night, Philip decides that he will refuse all future infusions. And he begins to feel well. We do not know what will happen in the morning, but one has the hopeful impression that Phillip will have his own way.
A chorus of lab techs making symmetrical repetitive motions with microscopes, pipettes, and petri dishes opens the play. They persist in the background of the set, which is the waiting and consulting rooms of a clinic for reproductive technology. The chief, Dr. Staiman, is not only an expert in this field of human biology — he also enjoys an international reputation (and many patents) for his genetic manipulation of orchids in a quest for perfect blooms.
Heather and Rose are both clients of the facility. Heather wants a baby and needs help to be able to conceive. Rose could actually conceive on her own; however, she is investing in expensive and painful genetic selection to avoid having a child with the same trait as her brother. His Tourette’s syndrome, she contends, ruined life for her parents and herself as well as for him.
It emerges that Heather too has Tourette’s syndrome, but she does not believe it ruined life for her family and is unafraid of having an affected child. The women must wrestle with the notion that Rose does not think someone like Heather should exist; and Heather wonders if she should be testing her own embryos.
The two clinic doctors, Blume and Staiman, offer similar services, but as an ethicist, Blume worries about the moral implications of the new technology. Heather challenges Staiman over his willingness to destroy an embryo that might become a person like herself. He seems baffled by her concern, claiming that science makes perfection possible and that the decision should belong to the parent.
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.