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. 

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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.

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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. 

            

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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.

Once in medical school her decision for neurosurgery as her specialty came very easily. Oliver Sacks's writing had a significant influence on her decision. She was also influenced by her college sweetheart who became her husband and who also chose to train as a neurosurgeon. He is not practicing now and they do not have children.

Her description of her long years of training are interestingly related with many individual patient stories and also many descriptions of her teachers and peers. She takes time to describe how she views the specialty itself and its power structure and all that entails. Among the interesting chapters are two about her research years, one at the center for cognitive brain imaging at Carnegie-Mellon and one as a fellow in Epilepsy Surgery. The author was fascinated with the complexity of brain function and its relation to anatomical structure with which she was much more familiar.

Firlik found that she loved "life on the learning curve" and that her curiosity was broad. About her last year as Chief Resident she said "I have had my hand in saving lives and I have had my hand in helping to end them: I'm not talking about murder, of course. I am talking about helping people die" (227). She was able to write this book because she kept a journal during her training.

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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.

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The first-person, nameless narrator is in mid-1970s San Francisco on a "sabbatical" that is more like an exile from his academic post in the east. He takes an office in a downtown building to force himself to leave his dull accommodations. Occasionally he can hear everything that transpires from the space on the other side of the wall, which is the office of psychiatrist, Dr. Schüssler. Normally, the woman doctor runs a white-noise machine to ensure privacy, but one patient — who becomes “my patient” — hates the noise and insists it be turned off.

Adopted in infancy, “my patient” is in a fraught lesbian relationship. Her doctor has been encouraging her to find her birth mother, but she keeps resisting. Finally she embarks on a long exploration that is told through her accounts to the doctor, through conversations repeated and letters read out loud. As an academic scholar, the eavesdropping narrator is able to trace records that could not be found by the patient; he takes the liberty of meddling, falsifying an agency letter and setting her on the correct path. He also realizes that the psychiatrist’s father was a Nazi officer by listening to telephone conversations with her own mentor.

“My patient” learns that her mother was Jewish and escaped death by being in a special facility as a comfort woman. Chameleon-like the mother’s identity changes over and over. In contrast to the nameless patient, her name moves from Maria to Miriam to Michal; she lives in Israel where the patient goes to find her. The biological father’s identity is a mystery—perhaps someone whom Michal loved, perhaps a Nazi officer. The sacrifice of her child to a Catholic adoption agency moves from inexplicable selfishness to desperate selflessness. Surprises continue to the end when "my patient" finds an Israeli sister who has been in contact with the mother but is no less confused over her identity.

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Augustine, a fifteen-year old maid in a wealthy home, collapses with a seizure while she is serving an elegant dinner. When she recovers, she is unable to open one eye. She is transported to Salpetriere hospital in Paris under the care of the famous J. M. Charcot, neurologist and psychiatrist who is fascinated by the condition of hysteria. He uses hypnosis to suggest cures to his patients and to trigger attacks which he demonstrates to his colleagues. Augustine is particularly susceptible to fits under hypnosis and obliges her doctor with lewd, convulsive performances virtually on command.

After one such episode the paralysis moves from her eye to her hand. She says that she wishes to be cured, but life in the asylum is not terrible: she has a warm room and food; she no longer needs to work in a kitchen or serve demanding masters.  The doctor is clearly taken with her as a scientific subject. “Augustine est une patient magnifique,” he assures a colleague. He is personally intrigued by her too.

Finally, one day she announces that she is cured. When Charcot tries to hypnotize her for another demonstration, she does not succumb; however, a look passes between them. Taking pity on her doctor, she stages a seizure that satisfies the audience. Immediately after, she and the doctor have a single passionate encounter against a clinic wall, and then she runs away.

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Jacob Needleman, a philosopher concerned with "applying philosophy to the questions of everyday life," taught medical ethics at San Francisco State University (SFSU). In this highly personal book he addresses what it means to be a "good doctor" and the role of physicians in contemporary society. The book is structured as a series of imaginary letters addressed to his childhood idol, the physician who treated him when he was 12 years old.

The aged Dr. Kaufman responds to these letters, although we see only the philosopher’s side of the correspondence. Toward the end of the book, Needleman makes a pilgrimage to Philadelphia to visit his ailing mentor. They talk for a while, then when the old man takes a nap, Needleman spends the rest of the day conversing with Dr. Kaufman’s daughter, a pediatrician who in some sense represents the "good" medicine of the future, just as her father represented the "good" medicine of the past.

In these letters the author addresses the deep questions of character and motivation in the form of a personal narrative. He recalls his experiences as a boy, his ambition to become a doctor, and several incidents from his life as an autopsy assistant and hospital orderly. For example, there is the bizarre story of the young man transporting an amputated leg by elevator; he accidentally drops the leg to the floor and the wrappings flip open, much to the astonishment of others on the elevator.

"People don’t trust science; people trust people." (p. 15) Similarly, Jacob Needleman writes, people don’t trust or distrust medicine as an institution; they trust or distrust doctors. "To be a good doctor, one must first of all be a good (person). And to be a good (person) one has to begin by discovering in oneself the desire for truth . . . truth is the only effective force." (p. 68)

To facilitate this quest for truth, Needleman describes in these letters a four-seminar sequence he teaches at SFSU: "To whom is the physician responsible?," "The art of living and the art of medicine," "Care," and "The financial disease of modern medicine." (pp. 71-72) Through these seminars the author hopes to re-awaken in prospective physicians the quest for truth, and the possibility of care, that he believes have been submerged by technology and infected by the financial disease. Dr. Kaufman’s daughter serves as a real-life example of the possibility of cultivating the contemporary version of the "good doctor."

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Nora Kynd (born in 1825) was a central character in Barrett’s Ship Fever (in this database). She survived illness and quarantine at Grosse Ile, but lost contact with both her younger brothers, Ned and Denis. She reaches Detroit by 1848 where she learns about herbal remedies from a kindly landlady. She marries late and has a son, Michael, but never stops searching for her brothers. Her husband dies. One day in 1868, Nora sees Ned’s name as the proprietor of a hunting and fishing lodge in the Adirondacks. She packs up everything and moves there with her young son.

Ned takes Nora and Michael into his home. He carries on with the hunting business and taxidermy, but they increasingly cater to people with tuberculosis who come for “The Cure” of good food, fresh air, and lots of rest—as a reflection of the famous nearby sanatorium (unnamed but likely the Trudeau Sanatorium at Saranac Lake). In this capacity, they meet lodgers Clara and her two daughters Gillian and Elizabeth—the almost abandoned family of the naturalist Max from Barrett’s story “Servants of the Map” (also this database).

Young Elizabeth has a cough and an eye for Michael, but he has eyes only for Gillian whom he eventually marries. Together they take over Ned’s Inn. For her cough, Elizabeth becomes a resident of the sanatorium and finds her own husband in fellow invalid, Andrew. Together they open a nearby boarding house for other invalids and Nora joins them in the endeavor as the nurse, serving until her death. But Nora was difficult to replace and Elizabeth is now searching for a new nurse to help with the care of her ailing clients.

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Benjamin Rubin is completing his surgical residency in a Tel Aviv hospital when the director of the hospital asks him to accompany him and his wife to India to rescue their daughter who is critically ill.  This invitation distresses him, as he recognizes in it a way of removing him from competition for a position in surgery at the hospital.  He makes the trip, however, and is entranced by Indian culture and mysticism, and, eventually, not by the daughter but by the mother he accompanied.  Back in Tel Aviv, he has a brief affair with the mother, moves into an apartment she owns, leaving his mother's home, and, to allay his obsession with an unavailable woman, marries an independent-minded woman who has also traveled in India and absorbed Buddhist spirituality and Eastern philosophy she discovered there.  Working as an anesthesiologist, Benjy continues in that setting, conflicted about both work and life, unable to connect deeply with any of those whose love he has received or sought.  Eventually his wife leaves with their baby daughter to return to India, where she has found a spiritual home, and Benjy remains in a divided state of mind in a divided country where his own spiritual heritage remains to be plumbed.

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