Summary:

Two hospice nurses describe their work with dying patients, especially with the special forms of communication typical of dying patients. The authors define "Nearing Death Awareness" as patients' knowledge and expression about their own dying. What doctors and family members may assume is the patient "losing it" or "hallucinating" actually is often a kind of symbolic communication dying patients typically use, either to describe their dying experiences or to request something they need for a peaceful death (such as seeing a loved one). By dismissing the patient as "confused," caregivers miss the opportunity to help the patient and may also alienate and frustrate both patient and family. By being aware of what is going on, caregivers can be more responsive and comforting to the patient and the family.

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Ann, the primary protagonist, is diagnosed with and operated on for breast cancer. Her family history leads her to suspect that she may have passed the breast cancer gene on to her daughters-this assertion without having been tested. She retreats from society. Her husband leaves her and she raises two daughters, ever plagued with guilt. The two daughters, as technology advances, choose to have themselves tested. One daughter, tests positive for BRCA-2; the second daughter is not tested, but is diagnosed with breast cancer.

The mystery becomes: from which parent did the women inherit the gene? While the younger daughter struggles with her progressive cancer, the older daughter goes in search of the genetic contributor. Since this becomes a search for an answer, the answer remains up to the reader to pursue. The angst created by the unanswered questions makes up the bulk of the intrigue, and may emulate real life struggles with this particular disease.

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In 1999, eighteen years after Project HOPE began publishing the journal "Health Affairs," the founding editor, John Iglehart, began a new column: Narrative Matters. This book contains 46 of the 80 essays published to date, and an inspiring foreword by Abraham Verghese. The essays are contained in eight chapters-- "Writing to Change Things: Essays on the Policy Narrative," "Dollars and Sense: Hard Financial Realities," "Bearing Witness: Patient's Stories," "The Maddening System: Frustrations and Solutions," "Trouble in the Ranks: Professional Problems," "Drug Resistance: Battling Undue Influences," "Disparity Dilemmas: Stories on Race and Ethnicity," and "Values and Choice: Stories of Practical Ethics." Familiar voices include those of Fitzhugh Mullan (one of the editors), Abigail Zuger, Howard Brody, Richard Lamm, John Lantos, Danielle Ofri, and Carol Levine. The essays in the first section strike an important cautionary tone, reminding readers that the plural of anecdote too often is taken for policy and that the repetition of anecdote should not be seen as evidence.

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John Grogan's best selling memoir of his and his family's life with an exuberant, loving Labrador retriever pup that grew into an overly boisterous ninety-seven pound member of the family chronicles the joys and tribulations of dog ownership. Particularly, of Marley ownership. Marley flunked obedience school, required tranquilizers to tolerate thunder storms, destroyed possessions and jumped on people, to name a few traits.

The young married couple adopted Marley before they had children. The reader learns of the pregnancies and births of the Grogan's three children, including a miscarriage, ‘performance failure' during sex timed to ovulation, and an episode of post-partum depression, with an eye to what Marley was up to during that phase of family life, and especially how he responded to his owners' emotional states. Marley's protective stance towards not only the children, but also to a knifing victim in the neighborhood and to Grogan himself when he was struck by lightning, proved the dog's loyalty and devotion.

Marley lived a full life; as he aged, his hearing, sight and mobility worsened. He required emergency abdominal surgery at an old age, recuperated, but then suffered the same stomach bloat and twist problem again.

Grogan, a newspaper columnist, decided, after a period of intense grief, to write an article about Marley. "‘No one ever called him a great dog - or even a good dog. He was as wild as a banshee and as strong as a bull. He crashed joyously through life with a gusto most often associated with natural disasters...' There was more to him than that, however... ‘He taught me to appreciate the simple things...And as he grew old and achy, he taught me about optimism in the face of adversity. Mostly, he taught me about friendship and selflessness and, above all else, unwavering loyalty.'" (p. 279)

The column generated an avalanche of responses; fellow owners of bad yet lovable dogs wrote to the newspaper of their own experiences. These responses were cathartic to Grogan as he and his family learned to live without Marley, the dog who had taught them all so much: "the art of unqualified love." (p. 287)

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Fifty-something Canadian professor of history and lifelong womanizer Rémy (Rémy Girard) lies in an overcrowded hospital with a fatal illness. Family and friends gather, including Rémy’s estranged son Sébastian (a wealthy financier played by Stéphane Rousseau) from overseas, and Rémy’s ex-wife (Dorothée Berryman) and several previous romantic partners. Rémy and Sébastian fight painfully about Rémy’s philandering, but after a plea from his mother Sébastian decides to make things better for his father, even if they have not been reconciled.

This he does in many ways, most of which involve spending lots of money and many of which are highly irregular or illegal. For example, he arranges to have his father taken into the U.S. for an expensive PET scan that would have required six months’ wait to have free in Canada. And he arranges through Nathalie (Marie-Josée Croze), a childhood friend who is now a heroin addict, to provide a regular supply of heroin to control his father’s pain, which the hospital apparently is not able to do with morphine.

These and other extraordinary measures work for Rémy, and the process of caregiving brings Sébastian and his father closer. (Rémy’s only problem seems to be the feeling that his life has been wasted because he has not left his mark--and he gets help with that, paradoxically, through several conversations with Nathalie.) For his last few days, Rémy and ensemble move to a friend’s lakeside cabin, where the conversation is witty, intellectual, and sexually frank, and the mood upbeat and conciliatory.

In the face of Rémy’s imminent demise, all is forgiven, and others seem to gain insight about their lives. Rémy’s last act is peacefully nodding to a sorrowful Nathalie to begin the series of heroin injections that will end his life. In a final dig at the establishment, the heroin is administered through an IV provided on the sly by a hospital nurse.

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Set in Sweden in the late 1950’s, around the time of Ingemar Johansson’s world heavyweight boxing championship, "My Life as a Dog" tells the involving story of a precocious boy, Ingemar (Anton Glanzelius), who gets into trouble, entertains his mother (Anki Lidén) with his antics and plays with his dog, Sickan. As his mother becomes increasingly sick with a terminal illness (almost certainly tuberculosis), he is sent to live with relations for the summer in a small rural community. After an eventful vacation, he returns to his mother but she soon dies. He stays with family friends who, unable to cope with him or his behavior, send him back to his relations, where he is again welcomed, but somewhat less enthusiastically.

Throughout this, Ingemar maintains his sense of perspective by comparing his own situation to the tragedies he reads in the newspaper. In particular, he returns to the story of Laika, the Russian dog launched into space. Laika was sent into orbit in a capsule with no expectation that she would return, and it was believed that she eventually starved to death or ran out of oxygen (although recent reports, decades after Laika’s death and several years after the film was made, have acknowledged that she probably died within a few hours of launching from overheating and stress).

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In this film based on a true story, Ramón Sampedro (Javier Barden), a young fisherman from the northwest coast of Spain, is injured in a diving accident that leaves him paralyzed from the neck down and completely dependent for his care on his older brother and his sister-in-law, who make numerous sacrifices in order to care for him. Twenty-seven years later, in his 50's, Ramón is weary of his life, which he feels is without dignity, and he tries to get legal permission to end it.

His brother is adamantly opposed to euthanasia, but Ramón is comforted and aided in his quest by two women who are drawn into his circle. Julia (Bélen Rueda), a lawyer suffering from a degenerative disease, begins to design a legal case for Ramón but soon falls in love with him (although she seems happily married), and he with her. In a particularly moving scene, Ramón-who of course cannot move--tells Julia that her smell is the beginning of his erotic fantasies about her.

Julia helps him edit and publish a book of his poetry, but then, having agreed to a joint suicide, she mysteriously backs out. Rosa (Lola Dueñas), a young single mother who works in a fish-packing factory and who has had a hard life, also falls in love with Ramón. For some time she tries to change his mind, arguing that his example has inspired her and saved her from a life of despair. Ramón challenges her: "The person who truly loves me will be the one who helps me [commit suicide]."

When Ramón's legal appeal (for the same rights the nondisabled have to end their lives) is lost on a technicality, he seems to have nowhere to turn, but Rosa, converted by her love for Ramón, finally agrees to help him die. He achieves his goal in a videotaped end in which he argues that what he is doing is his right and that no others should be blamed or prosecuted for it, sips poison through a straw, and dies.

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Veneta Masson's latest poetry collection is a clinician's guide not to illness and disease but to the souls touched by illness, both the patient's and the caregiver's. In 45 poems, she reviews her life in caregiving, from her early days in nursing to her work as a nurse practitioner in a community clinic and finally to her decision to use her hands "to write and to bless" (p. 93). Her poems are enhanced by the artwork of Rachel Dickerson, whose woodcuts and etchings are paired with poems to provide another voice, another way of looking into the soul of caregiving. For an example of this wonderful pairing, see the print that accompanies "The Screamer in Room 4" (p. 24). The print allows us to see the frustration of the screaming child, the child's mother, and the caregiver.

As always, Masson's poems center on the patient-caregiver experience; in this volume, as we follow her through her various adventures in nursing we also travel with her through the changes she has witnessed in healthcare and the politics that continue to affect its delivery. "Rx" (p. 22) examines Medicare and Medicaid and the political decisions that often deny medications to the elderly who need them most. "Gold Standard" (p.34) looks again at medicine and money, juxtaposing the medical pill against the placebo of the caring healer. One of my favorite poems, "The Doctor's Laptop" (p. 40) laments how technology might deprive patients of the doctor's time, attention and touch.

Other themes that are central to this collection are the unexpected presence of humor in caregiving (see "Conga! at the Rio," page 50), of spirituality (see especially "Rescue," page 36, "Refuge," page 45, and "Prevention," page 82), and of the personal. In several moving poems Masson looks at her own sister's death and her reaction to it, writing about her conflicting roles as sister and nurse (see, among others, "Matinee," "Hilda and Snow White," and "The Nurse's Job," pages 70, 72 and 74). In an excellent final poem, "Winter Count," Masson takes us through her own nursing history, a chronicle of work, joy, disappointment and survival that any caregiver will recognize.

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The novel opens with a young surgical nurse, Justine Brent, nursing a mill worker whose arm has been mangled by a carding machine. She soon meets John Amherst, the mill’s assistant manager who works passionately to reform the dangerous conditions at the mill and to improve the living conditions of the workers. Amherst recognizes Justine’s intelligence and sympathy, but he quickly forgets about her when he meets and falls in love with the new mill owner, Bessy Langhope.

The narrative skips ahead three years. John Amherst has learned that his now-wife Bessy has no real interest in his plan to reform the mill, although she initially appeared to be moved by the workers’ misery. In fact, her insistence on luxury, which is funded by the profit from the mills, thwarts his desire to use her controlling interest to make significant changes. The couple encounters Justine, who knew Bessy in school. When the somewhat sickly Bessy invites her to be a private nurse to herself and her stepdaughter, Justine, who is exhausted from “difficult cases,” accepts. Justine attempts to shore up John and Bessy’s increasingly troubled marriage without success. When John is abroad, Bessy has an accident while riding her horse. Paralyzed, in constant pain, and slowly dying, Bessy is attended by a physician who advances his career with the technological feat of keeping Bessy alive, ostensibly until her husband and her father arrive to say their goodbyes. When Bessy begs Justine to let her die, Justine secretly gives her a fatal dose of morphine, an act that the physician suspects.

The narrative skips ahead again to over a year later when Amherst, who has inherited the mills from Bessy, invites her family to celebrate the opening of an emergency hospital he has built in the mill town. Justine, who had stayed on after Bessy’s death as her stepdaughter’s nurse, and Amherst become reacquainted. Their shared social and intellectual interests develop into love, and they marry. The physician who had cared for Bessy and who had, earlier, asked Justine to marry him, had developed an addiction, one that had begun while he was treating Bessy. Beginning to sink into financial ruin, he blackmails Justine. Eventually, Amherst finds out that Justine killed Bessie with morphine and, horrified, rejects her.

Justine confesses her act to Bessy’s father and negotiates a deal: She will remove herself from their lives if he allows Amherst to continue his work at the mills. Bessy’s father accepts the deal, and Justine disappears for many months until Bessy’s daughter becomes ill and begs to be reunited with Justine. A family friend explains to Amherst Justine’s arrangement to protect him and convinces him that she has suffered suitable penance. Justine is reunited with Amherst when he celebrates the opening of a gymnasium for the mill workers, a project he credits Bessy with having designed. Justine, who knows that Bessy had in fact designed the gymnasium for her private estate, a project that would have drained the funds for improving the mills, keeps silent and subverts her knowledge to her husband’s perception of the facts.

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Nate, 14, comes home to his family's Montana farm one day to see police cars. His father, whose head is bloodied from a gunshot wound, is taken away in an ambulance. He and his 7-year-old sister are whisked into the house and cared for by an aunt until their mother, shocked and withdrawn, returns home. In the weeks following Nate finds it hard to get any adults to level with him about what happened, though he overhears conversations that make it fairly clear it was a suicide attempt. The kids at school withdraw from him and his sister; parents in the area tell their children not to play with them, as they always suspected there was something strange about the family. Only one girl, herself something of an outcast because of her father's aggressive fundamentalist preaching, befriends him, and becomes his partner in a science project.

Nate throws his energies into the project--creating a cloud chamber in which radiation from distant stars can be seen--and into pitching for the baseball team. Both are enterprises his father would have helped him with. His father, a dreamer and scientific visionary, is in a mental hospital, recovering. The police fail to find the rifle, but Nate and two friends do find it, and so exonerate his mother, who has been under suspicion in the inconclusive case.

After the contest, in which a disgruntled student sabotages what is actually a remarkably successful and well-made project, he takes Junie and the family car and drives several hours to find his father who, it turns out, is lucid and recovering, but blind. Their mother is selling the farm, they are about to move, but there is hope of some recovery on all sides, though not what any of them would have foreseen or chosen.

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