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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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. 

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Annie Howard is beginning high school in Tacoma, Washington in 1950, four years after her father returned from World War II, having been blinded in combat.  Her mother has opened her own beauty salon as a way of coping with her husband’s disability and the loss of earning power it has meant.  Annie loves her father, and maintains a close relationship with him, but is dismayed by his recurrent depressions and his steady refusal to get a guide dog, go out into the world, and respond to invitations to volunteer with an organization that helps other veterans similarly afflicted.  As the school year begins she meets two new friends, a Dutch brother and sister—refugees whose parents were killed in the war and who now live with an aunt and uncle.  Through them, and ultimately through her father, Annie learns some hard truths about the lasting effects of trauma, about the role of acceptance in healing, and about how a more grown-up love involves willingness to accompany others through some of the darker dimensions of suffering.

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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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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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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. 

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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.

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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.

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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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While the author's surgery for throat cancer when he was 14 years old, and its aftermath are the central events in this graphic memoir, Stitches is more essentially the story of a dysfunctional family. The memoir begins when David Small is six, growing up in Detroit, drawing, and observing the body language of his often silent parents and brother. Tension fills the house. David's mother's face is in an almost permanent scowl and the "mere moving of her fork a half inch to the right spelled dread at the dinner table" (16).  She slams pots and kitchen cabinet doors while David's radiologist father lets loose on a punching bag in the basement and his brother beats drums. David is in a constant struggle to avoid his mother's fury, which author/artist David depicts as a tidal wave. His father is remote, puffing silently on his pipe.
 
When David is 11 a female friend of the family, the wife of a surgeon, draws attention to a growth on David's neck, which his parents have either failed to notice or knowingly ignored. In due time the neck is x-rayed. The surgeon-friend diagnoses a sebaceous cyst and recommends an operation. With the mother's frequent protests about lack of money--in spite of an extended shopping spree the parents undertake-- it is three and a half more years before the surgery takes place. David undergoes the procedure with relative equanimity, the hospital and medical staff being familiar -- people he "thought of as my extended family, my protectors" (160). When he wakes up from the surgery, his father assures him that nothing is wrong but that he will need a second operation by a specialist. Uncharacteristically, his mother asks if there is anything she can get for him.

Waking up from the second surgery, David has no voice -- one vocal cord and his thyroid gland have been removed. "The fact that you now have no voice will define you from here on in" (186). Later, when changing his bandage by himself, he discovers a long, ugly array of stitches on the side of his neck. He has nightmares, and on one sleepless night as he wanders the house, discovers a letter written by one of his parents to "mama" which says, "of course the boy does not know it was cancer" (204). The accumulated silences and parental betrayal trigger David's delinquent behavior and  time in a boarding school, from which he runs away three times; ultimately he is expelled with a recommendation to get psychiatric help. Reluctantly, his mother drives him to a psychoanalyst -- "it's like throwing money down a hole, if you ask me" (247) -- but this intervention turns David's life around. The analyst, depicted by the author as a tall, fully clothed white rabbit, explains to David, "your mother doesn't love you" (255).  "It was such a relief to hear" said Small in an interview. Another truth is eventually revealed by David's father, who takes David out to dinner to tell him, after a lengthy silence, that the numerous x-ray treatments for sinus infections he had given the young David must have caused the throat cancer: "two-to-four hundred rads. I GAVE YOU CANCER" (286-287).

 

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