Summary:

This anthology culls 1,500 excerpts from approximately 600 works of literature primarily written in the past two centuries and representing all major genres--the novel, drama, poetry, and essay. These brief selections highlight how literature portrays the medical profession and also provide ample evidence of many recurrent themes about the doctor-patient relationship and the personal lives of physicians present in the pages of fiction.

The book is organized into eleven chapters devoted to the following subjects: the doctor's fee, time, bedside manner, the medical history and physical examination, communication and truth, treatment, detachment, resentment of the medical profession, hospital rounds, social status, and the doctor in court. Many well-known authors including Anton P. Chekhov, Sir Arthur Conan Doyle, Ernest Hemingway, Thomas Mann, W. (William) Somerset Maugham, Leo Tolstoy, Tennessee Williams, and William Carlos Williams are featured in this anthology but less notable writers are also introduced. A twenty-three-page bibliography of primary and secondary sources is a useful element of the book.

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Vicki Forman's twins, Evan and Ellie, were born in 2000 at twenty-three weeks' gestation.  Fetuses could legally be aborted up to twenty-four weeks, but rules regulating treatment of extremely premature babies differed from one hospital to another.  Daughter of a doctor, Forman knew how slim were the chances of survival and how great the chances of serious disability if either of the twins did survive.  Grieving, but realistic, she and her husband asked for a DNR order, but learned that such orders did not strictly apply to the situation of children like their twins.  Instead, the line between  the parents' authority and the doctors' remained blurry and decision-making vexed not only by technical and emotional complications, but by conflicting legal guidelines as they made their way through many months of hospitalization and home treatment of their surviving son.

Ellie, the daughter, died at four days.  Evan lived for eight years with disabilities that completely reorganized family life, and required constant monitoring, management of equipment, and careful orchestration of parental relationship to their older child, Josie, and their special-needs child.  Much of the narrative covers the period of hospitalization during Evan's early months and the negotiations between parents, physicians, and other caregivers.  It also touches on Forman's own emotional responses to the strenuous learning curve required of a parent who suddenly finds herself with a special-needs child.

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The author introduces his book by saying, "I should like to write a book to help people cope with inexplicable pain and suffering." He is "profoundly suspicious" of the genre of books that attempt to explain why a good and all-powerful God allows us "to undergo suffering for seemingly no reason." Thus, he distinguishes his investigation from theodicy in the traditional sense (an explanation of why God allows suffering); rather, Hauerwas wishes to explore why human beings believe it is so important for us to ask why God allows suffering.

The narrative backbone of this book is provided by fictional and non-fictional texts about the suffering and death of children. The prime fictional example is The Blood of the Lamb, Peter De Vries's 1961 novel about an 11-year old girl who dies of leukemia and the anguish of her father. This fiction, however, was based on De Vries's personal experience. [See annotation in this database.] Hauerwas also explores several non-fictional accounts of dying children, especially Where Is God When a Child Suffers? by Penny Giesbrecht, The Private World of Dying Children by Myra Bluebond-Langner, and Lament for a Son by Nicholas Wolterstorff.

Traditionally, suffering and death were interpreted in the context of religious meaning (e.g. part of God's plan, punishment for sin, etc.) Yet, the fact that God allows evil--in the form of suffering--to occur poses a problem, if God is both all compassionate and all-powerful. Modern medicine dispenses with the meaning of illness--disease and suffering are pointless and should be eliminated, if possible. Likewise, in modern society our preferred death is sudden like a bolt of lightning (no suffering), while in the past people looked for a "good death," which might involved a period of suffering during which the person could become reconciled to family, friends, and God.

Nonetheless, even if we adopt a scientific point of view, as human beings we can't help attributing narrative meaning to our illnesses. Thus, when adults suffer, we place their suffering in the context of a life story that may include a number of layers and dimensions. We "dilute" the suffering in the context of story. However, childhood suffering and death appear to truncate narratives, sometimes even to abolish them. Therefore, the suffering seems particularly meaningless, and it feels more "evil" and more devastating.

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The story of a woman artist's slow decline into dementia and death as told through the eyes, words, and reflections of her philosophy professor son. Through his memories of their 1950s life together, he reconstructs a speculative analysis of her early married life with his soil-scientist, Russian-immigrant father.

The one older brother becomes a neuropathologist who investigates the very disease that slowly strips their mother of herself. Their father tends to her growing needs at the family farm, but he dies suddenly and she must be placed in an institution where one nurse alone seems to respect her dignity.

The brothers' rivalries and misunderstandings are recapitulated in their different responses to their father's death and their mother's illness: the physician retreats to scientific explanations of the "scar tissue" in her brain; the philosopher looks for evidence of personhood and for reassurance that death should not be feared. His obsession with his mother's condition stems from a deeply felt sense of guilt; it destroys his marriage and condemns him to depression, hypochondria, and shame as he creates and diagnoses the same illness in himself, long before it can be detected by doctors.

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Augusto and Michaela Odone (Nick Nolte and Susan Sarandon) are the adoring parents of a bright little boy who inexplicably develops alarming behavioral problems, after they return from working in the Comoro Islands. A series of investigations results in a diagnosis of adrenoleukodystrophy (ALD), but the boy rapidly deteriorates into a bed-ridden, inarticulate state. Frustrated by the medical profession's inability to help, Augusto and Michaela embark on an odyssey of salvation, studying lipid metabolism, promoting international conferences, and trying to disseminate their findings to other parents.

Their insights lead them to experiment with at least two effective therapies, one of which is erucic acid (Lorenzo's oil). Michaela feels guilt as well as grief, when she understands that the X-linked disease is passed from mother to son. In an effort to keep Lorenzo at home, she refuses to admit the extent of his disability, alienates her family, dismisses nurses, and assumes most of the care herself, nearly ruining her own health and her marriage. The film ends hopefully with tiny signs of recovery in Lorenzo. The credits roll over the faces and voices of happy, healthy-looking boys who have been taking Lorenzo's Oil.

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In September 1796, 32-year-old Mary Lamb (1764-1847), stabbed her mother to death with a carving knife during an incoherent frenzy. Almost immediately, she became calm and was sent to a madhouse, remaining away from home for months until her grieving and unforgiving father had died. Mary was released into the care of her much younger brother, Charles (1775-1834), soon to be known for his poetry and essays. She never went to prison, but would return to the madhouse many times over the next fifty years. As a result, this life is an interesting exploration of chronic mental disturbance in the early nineteenth century.

Neither Charles nor Mary ever married; they always lived together and professed to be each other's dearest friend. Obliged to eke out a middle class income--she (until her crime) at dressmaking, he in an office--they turned to writing, often together. The Lambs' famous Tales from Shakespear [sic] was written mostly by Mary, but their friend William Godwin under Charles's name as sole author first published it. Mary's other books, edifying texts for young female readers, were published anonymously.

Letters to their many friends reveal Mary's vexation with Charles's drinking and smoking and his concerns over her multiple relapses, which were triggered by being obliged to move house. Charles predeceased his older sister by ten years and she spent the rest of her life in chronic care of a private couple, visiting his grave almost every day.

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This outstanding anthology of poems, stories, excerpts and essays by African-American writers is prefaced by a poem ("Aunt Sue’s Stories" by Langston Hughes), a foreword, two essays and an introduction. The book is then divided into three sections: Section I, Illness and Health-Seeking Behavior; Section II, Aging; and Section III, Loss and Grief.

Each section begins with an introduction which clarifies the choice of the section’s theme and briefly describes each piece. At the conclusion of each section is a list of ten to fifteen questions which "are intended for personal reflection and group discussion." Brief autobiographical information for each of the thirty-one authors is presented in Appendix 1.

As Secundy notes in the introduction, a divide exists between the health care worker and patient, which is particularly prominent when color and economic status are different between them. Secundy, as an educator in the medical humanities, selected pieces that reveal "the significance of color and social distinctions" when African-Americans face illness or enter the health care system.

The selections chronicle struggle and survival, illness and loss, humiliation and pride, triumph and sorrow. These pieces speak to all of us, as Edmund Pellegrino states in his essay, "Ethnicity and Healing": "[p]aradoxically, as we learn more about the uniqueness of African-American culture, we are drawn closer to the common humanity we share with the subjects of these stories and poems."

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During the opening credits, the camera slowly pans over the myriad medications for Marvin (Hume Cronyn), the elderly, bedridden invalid cared for round-the-clock by his daughter, Bessie (Diane Keaton). The film opens with Bessie visiting Dr. Wally (Robert DeNiro), a pathologist cum primary care physician, for diagnostic tests which show that she has leukemia.

Bessie also takes care of her Aunt Ruth, whose electric unit for pain relief and penchant for soap operas provide comic relief in this bittersweet drama about families and responsibilities. Because Bessie's best chance for survival is a bone marrow transplant, she contacts her sister, Lee (Meryl Streep), estranged since their father's first stroke and Lee's decision not to help care for him.

Lee's oldest son, Hank (Leonardo DiCaprio), is a troubled seventeen-year-old who sets fire to their home and is hospitalized in a mental institution. Released for this special trip to visit his Aunt Bessie, Hank continues his rebellion by refusing to be tested as a possible donor. Lee is a dysfunctional mother: she does not respond to her son's apology regarding the arson, she has her younger son light cigarettes, and she confuses discipline with control.

The family unites in and around Marvin's room. Reunions are never as smooth as planned, and tensions, stored bitterness, and anger erupt. The sisters confront each other in their failures as sisters--Bessie had never contacted her nephews in any way and Lee had never looked back. But through it all, love and caring emerge: the sisters come to a new understanding, Bessie's reaching out to rebellious Hank is reciprocated, and Lee even learns to communicate caring to her son.

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Worlds Apart is a set of four documentary videos designed to stimulate thought and discussion about the effects of culture on communication and medical decision-making. Each video encapsulates the story of a real patient and his or her interactions with physicians and family.

The four videos are: (1) Kochi Story--an Afghan man, diagnosed with stomach cancer, decides about chemotherapy amidst miscommunication due to translation issues and religious convictions; (2) Chitsena Story--the mother of a four-year-old girl from Laos is caught between physicians who tell her that her daughter needs surgery to correct an atrial septal defect, and her mother who upholds the traditional Khmu beliefs that scars, including surgical scars, are injurious to a person in future lives; (3) Phillips Story--an African-American man on dialysis discusses the prejudices against black people in the health care system, particularly the decreased chances for receiving a renal transplant; (4) Mercado Story--a 60-year-old Puerto Rican woman who lives in Hell's Kitchen, New York City, explains the complex social situation which affects her ability to take care of her chronic health problems, such as diabetes and hypertension.

The films depict the patients and families in various settings--in doctors' offices, at other health care facilities, at home or work, during religious ceremonies. Phillips Story is different in that only the patient speaks during the film--in the other three stories we hear family members, translators, and physicians. The pitfalls of translation by a family member or friend are discussed, as well as the need for the physician to elicit information from patients about the social contexts that may affect their health and decisions.

For example, Mr. Kochi's religious beliefs contravene the use of continuous infusion chemotherapy, but not other regimens--this distinction is not elucidated for many months. Hence cultural competency in health care requires that the provider not assume reasons for patients' behaviors and decisions but rather emphasizes communication to understand the particulars of the situation.

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Constructed as a triptych, the novel chronicles several generations of a Scottish family, the McLeod’s, across three Junes: Part I Collies, 1989; Part II Upright, 1995; and Part III, Boys 1999. In the first part, patriarch Paul McLeod assuages his grief and loneliness following his wife’s death by traveling to Greece on a tour. He tells the tour guide about his wife’s lung cancer: "A terrible ordinary death, you might say. Or an ordinary terrible death." (p. 23) Paul’s unrequited yearning for Fern, a young artist, heralds a succession of missed opportunities for expressions of love involving the McLeod’s.

The second part is a first person narrative by Fenno, Paul’s eldest son. Fenno, the gay owner of a Manhattan bookstore, cares for Malachy, a New York Times music critic, who has AIDS. Paul’s death brings the three sons together (Fenno and his younger twin brothers David, a veterinarian who lives in Scotland with his wife Lillian, and Dennis, a chef, who arrives from France with his wife and children).

The family relationships are complicated, and David’s infertility leads to revelations about strengths and weakness of various family members. Meanwhile, Mal’s illness and his decisions about controlling the end of his life, also give Fenno insight into loyalties and family secrets.

The last section, a coda, reverts to third person narration and reintroduces Fern, now widowed due to a freak accident and also pregnant. Themes of parenthood, responsibility and relationships continue to be developed.

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