Showing 211 - 220 of 822 annotations tagged with the keyword "Caregivers"

Empathy in Patient Care

Hojat, Mohammadreza

Last Updated: Dec-07-2009
Annotated by:
Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Dr. Hojat's comprehensive survey of empathy in medicine is subtitled "Antecedents, Developments, Measurement, and Outcomes." He begins by carefully distinguishing empathy from related concepts or qualities, like sympathy and compassion; and by clarifying the cognitive, as opposed to affective, nature of empathy. Essentially, empathy creates our sense of connectedness with other human beings and, to a limited extent, with some animals. After sketching its evolutionaly and neurological substrates, Hojat then summarizes research in measuring empathy, with particular emphasis on empathy in the clinical setting.

The Jefferson Scale of Physician Empathy (JSPE), developed by Hojat, is among the most useful and well-validated self-report survey instruments. This scale is also available in a form to be completed by patients, the Jefferson Scale of Patient's Perception of Physician Empathy (JSPPPE). Hojat presents the results of numerous studies using the JSPE and other instruments to asses medical student and physician empathy. For example, some evidence suggests that female physicians are more empathic than male physicians, that students with higher empathy scores are more likely to engage in prosocial behavior, and that primary care attracts medical students who score higher in empathy. There is also a considerable body of evidence showing that empathic engagement with patients by physicians leads to better health outcomes.

The chapter on enhancement of empathy is especially important for medical education. Hojat reviews various methods for enhancing clinical empathy, including, for example, communication skills training, systematic "shadowing," teaching narrative skills, and study of literature and the arts. He concludes "research shows that empathy can be enhanced effectively by dedicated educational programs," although such programs face many obstacles in the current context of medical education.

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Annotated by:
Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Doctors in Fiction. Lessons from Literature is an interesting collection of short essays about fictional physicians by Borys Surawicz and Beverly Jacobson. The authors, one a cardiologist (Surawicz) and the other a freelance writer, discuss more than 30 physicians drawn from novels, short stories, and drama, and representing a fictional time frame from the late 12th to the early 21st century.  In each chapter the authors present one or more of these physicians in context, briefly introducing the work, the writer, and a précis of social context.

Dr. Andrew Manson in A. J. Cronin's The Citadel and Dr. Martin Arrowsmith in Sinclair Lewis's Arrowsmith appear in the section entitled "Idealistic Doctors." Other examples of "good" physicians include Tertius Lydgate (Middlemarch), Bernard Rieux (The Plague), and Thomas Stockman (An Enemy of the People).  At the other end of the spectrum are failures and burnt-out cases, like alcoholic psychiatrist Dick Diver in F. Scott Fitzgerald's Tender Is the Night and the debauched abortionist Dr. Harry Wilbourne in Faulkner's The Wild Palms.   

Some of the best examples of fallen doctors appear in Anton Chekhov's stories and plays. Chekhov, a practicing physician himself, well understood the triumphs and tragedies of the medical experience. Surawicz and Jacobson single out Dr. Andrei Ragin, the dispirited medical director of Chekhov's Ward 6 for special attention. They also touch briefly on Dymov, an idealistic physician who dies as a result of diphtheria he contracted from a patient (The Grasshopper); Korolyov, a young doctor who develops an empathic bond with a woman who suffers from chronic anxiety ("A Doctor's Visit"); Startsev, a practitioner who grows to love money more than his patients' welfare("Ionych"); and Astrov, the dedicated proto-environmentalist physician in Uncle Vanya.

Two of the most striking figures in Doctors in Fiction arise from contemporary popular novels, although their fictional lives take place in an earlier time. The first is Dr. Adelia Aguilar, the protagonist of several mystery novels by Ariana Franklin. Aguilar is a graduate of the University of Salerno and serves as a forensic consultant to King Henry II of England in the 1170s. The other is Dr. Stephen Maturin, well known to millions of readers as the particular friend of Captain Jack Aubrey in  Patrick O'Brian's series of novels about the British navy during the Napoleonic Wars. Maturin is not only a famous physician and naturalist, but also a British undercover intelligence agent.

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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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Where is the Mango Princess?

Crimmins, Cathy

Last Updated: Nov-30-2009
Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The lives of writer Cathy Crimmins, her lawyer husband Alan Forman, and their seven-year-old daughter were changed forever on July 1, 1996, at a lake near Kingston, Ontario. "Alan’s brain got run over by a speedboat. That last sentence reads like a bad country-western song lyric, but it’s true. It was a silly, horrible, stupid accident." (p. 5). While Alan steered a small boat back to dock at the end of their vacation, a teenager drove a speedboat literally over him, causing major traumatic brain injury (TBI) including seizures, coma, hemorrhage and paralysis.

Crimmins chronicles her husband’s remarkable recovery with a mix of humor, medical information, anger at HMO denial of benefits, and gratitude for the care of physicians, nurses, therapists, EMT, friends and family during this grueling, and in many ways, never-ending ordeal. Although Alan survived -- and is now capable of walking, speaking, reading, loving, working and driving -- he is a different person. The injury to his frontal lobes causes him to be disinhibited, erratic, angry, irrational, petulant, obsessive, devoted yet cruel to his daughter, and prone to severe "cognitive fatigue."

TBI is a bizarre, unpredictable illness. Crimmins notes that the degree of Alan’s recovery is atypical for the force of his trauma. In addition, TBI survivors say and do wacky things: "Where is the mango princess?" was one of Alan’s first utterances after emerging from his coma. Alan’s pre-accident sharp-edged humor was replaced by bland affability and a disturbingly vacant gaze. Yet some of what he says and does is heart wrenching and poignant.

The book clearly documents that the trauma is not limited to the patient. As Crimmins so eloquently and honestly recounts, she, her daughter, and all who knew Alan were traumatized by the accident and its aftermath.

Crimmins is an aggressive caregiver, thrust kicking and fighting into the caregiver role. Her advocacy for her husband, including research into the best rehabilitation facility, day hospital, vocational rehabilitation program, doctors, therapists, etc., was unwavering and crucial to his optimal care and outcome.

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In this study of a small group of children followed by an HIV clinic at an unidentified institution, the author describes in detail her experience with the children, their caregivers--sometimes biological family members, sometimes foster providers--and the medical staff responsible for the management of their viral infection. The writer, a humanities professor at a medical school, acknowledges the privilege she felt at having been in a position to develop a close personal contact over several years with the people about whom she writes.

The frame of the study is case-oriented. Each child is described and the medical and social histories of a total of nine are outlined and then fleshed out with personal interviews and home visits made by the writer. In addition to the histories, Hawkins includes a glossary of contemporary medical terms and common acronyms relevant to HIV, a bibliography, and a list of resources for those interested in looking further into this infection as it presents in children.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This is the story of a child/young adult who had the misfortune of multiple health problems from the age of three until his death at 19. But even more than Jesse's story, this is the narrative of and by Jesse's father as he recalls the emotional rollercoaster accompanying the abbreviated span of his oldest son's life. The author kept detailed journals of his and his son's experiences with the health care professions, while also collecting the boy's artwork which appears to be Jesse's personal record of his own internal struggle.

Although not chronologically linear, the narrative allows the reader into the soul of the parents' agony, from the time of Jesse's initial diagnosis of hydrocephalus, through management of inflammatory bowel disease, and into the final chronicle of unsuccessful liver transplantations.

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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In Dirty Details, Marion Deutsche Cohen writes about the unrelenting labor entailed in caring for her husband Jeffrey at home as multiple sclerosis turns his symptoms from "mere inconveniences" (11) to extraordinary demands, which can disturb her sleep as frequently as twenty times a night.  The premise of her unsparing narrative is that "we have got to spill the dirty details" (26) of such arrangements before the endurance-draining responsibilities of home care such as hers can be understood and redressed.  In a culture that favors narratives of seemingly heroic individual effort, Cohen's brutally forthright descriptions of the effects of Jeff's needs on her life can be mistaken for a self-pitying complaint, rather than an urgent, revelatory, political call to action.  Like her husband, a well-published physicist at the University of Pennsylvania when diagnosed with MS at age 36 in 1977, Cohen is an accomplished professional.  With a PhD in mathematics, Cohen teaches college students as well as publishes poetry and prose.  She and her husband also shared, with increasing asymmetry, the parenting of their four children.                 

Cohen captures the wearying routine of her days in her narrative's echoing refrain, "nights, lifting, and toilet."   The nights refer to Cohen's dangerously disrupted sleep.  Her husband's respirator can sound every half hour or so, inciting her to worry "about the psychological effects of seldom being allowed to finish my dreams" (23).  (When she asks if the machine can be fixed, she's told that it's supposed to behave that way.  By implication, so is she, despite the toll on her well-being.)  Yet she daily rallies the strength to lift her husband on and off the toilet, a feat, among others, that sometimes defied the powers of several hospital nurses working together.   Toilet also means responding to Jeffrey's regular calls to her to drop what she's doing, run upstairs, and bring him a jar.  The jar at least relieves her from lifting.  She experiences only intermittent relief, however, from finding and keeping home health aides who are able to show up reliably and behave civilly during the few hours per day they can be funded.  What results from these tests of human stamina, Cohen tells us, is not "ordinary stress" that some optimistically believe can be managed by taking stress reduction workshops, but rather "dire straits."  "Calling dire straits stress," she corrects, "undermines well spouses and makes us feel alienated and confused about where we stand" (32). 

It's that standing in the broadest sense of the word that Cohen's book most searingly addresses.  While Dirty Details contains one woman's account of caring for a disabled husband at home, the book's wider purpose is to make the labor of family caregivers visible with all its strains, conflicts, messiness, failures, anger, and, at times, humor.   As the straights become increasingly dire, though, Cohen writes about what happens to love as she moves from sustaining tenderness, candor, and their physical intimacy to diminishing her compassion for Jeff and saving herself:  a "pure survival instinct" (87).   After sixteen years in his family's care, Jeff at first reluctantly enters Inglis House, a residence that provides as much independence as possible for those who cannot live independently, where he continues to write and publish.  Cohen's professional life, social life, and beloved parenting once again flourish.  The story she is freed to write (illustrated with photographs by Anna Moon taken with Jeff's consent) lead readers away from her particular circumstances toward a comprehensive interrogation of social and medical systems that operate by leaving the most chronically ill and disabled citizens in their families' care by default.   And leave the families in dire straits.

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Sea of Glass

Farrington, Carolyn

Last Updated: Nov-19-2009
Annotated by:
Davis, Cortney

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This short novel tells the story of Renee and Michael Talbott and their son Evan, a young man "admitted to the hospital as a voluntary patient when he was no longer able to survive in the outside world." Evan's schizophrenia and recurrent institutionalizations, described from his mother's point of view, devastate his family and drive a wedge of guilt and resentment between his mother and step father.

The novel, although written in simple, straight-forward prose, suggests a Dickens-like expose' of social ills, human entanglement, and (perceived) medical mistakes. At the book's conclusion, Renee, sensitized to the fate of all who suffer from mental illness, finds no resolution even when Evan is, for a time, stable and independent.

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