Showing 11 - 20 of 203 annotations tagged with the keyword "Institutionalization"

Annotated by:
Lerner, Barron

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

Perhaps no topic in the history of medicine has been explored as much as the lobotomy.  Psychiatrists, historians and journalists have weighed in on this controversial topic, and the procedure has been featured in a number of Hollywood films.

Yet there is nothing like a narrative of a specific lobotomy patient to draw us into the subject anew.  And that is why Kate Clifford Larson’s new book, Rosemary: The Forgotten Kennedy Daughter, is so compelling—even if we already know the sad outcome of Rosemary Kennedy’s life.

Originally devised in 1935 by the Portuguese neurologist Egas Moniz, the lobotomy involved drilling holes in the skull and using a blade to sever nerve fibers running from the frontal lobes to the rest of the brain.  Moniz believed that psychiatric symptoms were caused by longstanding faulty nerve connections.  Severing them, and allowing new connections to form, he postulated, would help treat patients with intractable mental illness, such as schizophrenia and its paranoid delusions.

America’s chief proponent of lobotomy was Washington, D.C. neurologist Walter J. Freeman who, working with neurosurgeon James W. Watts, reported in 1937 that 13 of 20 patients undergoing the operation had improved.  Freeman would later devise his own procedure, the transorbital lobotomy, in which he actually used a mallet to pound an ice pick through the patient’s eye socket into the brain, then moved the pick around blindly to cut the nerve fibers.

Among the first histories of lobotomy was psychologist Elliot S. Valenstein’s  Great and Desperate Cures (1986), which strongly criticized Freeman and his contemporaries as overzealous physicians who did far more harm than good, creating docile and apathetic individuals no longer capable of caring for themselves.  Physician-historian Joel Braslow’s Mental Ills and Bodily Cures (1997) argued convincingly that a main motivation for the popularity of lobotomies—roughly 40,000 would be performed in the United States by the 1960s—was to enable staff members to maintain order in crowded, understaffed institutions.   In Last Resort (1998), historian Jack D. Pressman made the provocative claim that lobotomy represented the best science of the day and that, at least in some cases, it allowed patients to return home with fewer psychiatric symptoms.

Rosemary Kennedy was born in 1918, the third of what would eventually be nine children of Joseph and Rose Kennedy.  Joe was a successful businessman and investor who later entered politics, first as chairman of the Securities and Exchange Commission from 1932 to 1935 and then as U.S. Ambassador to Britain from 1938 to 1940.  At an early age, it was clear that Rosemary was not as mentally sharp as her two older brothers, Joe Jr. and John.  Larson hypothesizes that Rosemary’s “intellectual disability” occurred at birth, when a nurse forcibly kept her in her mother’s womb—perhaps without adequate oxygenation—while waiting for the doctor to arrive.

It was Rosemary’s blessing and curse to be born into the high-powered and prominent Kennedy family.  Her parents left no stone unturned in trying to help their daughter, sending her to special schools and programs around the world.  But they simply could not tolerate her lack of improvement.  Rosemary was a terrible speller and writer, socially awkward and at times unruly.  Joe Sr., in particular, worried about the negative ramifications to his sons’ possible political careers if word got out about their “retarded” sister.

Reading about Rosemary’s first two decades, and knowing that her lobotomy is approaching, is truly heartbreaking.  Writing letters home from her various placements, she was so eager to please.  “I would do anything to make you happy,” she told her father in 1934 at the age of 16.  “I hate to Disppoint [sic] you in anyway.”

When the Kennedys first arrived in England in 1938, Rosemary, her mother Rose and her younger sister Kathleen were presented to the king and queen.  For once, the circumstances tilted in Rosemary’s favor.  The event was smashing.  Photographs show Rosemary, who had become a very attractive young woman, resplendent in a “picture dress of white tulle.”  She felt, she said, like Cinderella.

But when the family returned to the United States in 1940, with war approaching in Europe, the situation was no different than it had always been.  Plus, now in her early twenties, Rosemary’s moodiness and emotional outbursts were becoming more frequent.

Lobotomy had gotten a lot of press in 1941, particularly in a May article in the Saturday Evening Post that highlighted the work of Freeman and Watts.  And while this piece warned about the dangers of the procedure, it mostly praised its ability to make people with mental illness into “useful members of society.”  At some point, Joe Kennedy met with Freeman and decided that Rosemary should undergo the operation.  Larson does not unearth exactly how the decision was reached—or what Rosemary was told.  But it seems to mostly have been Joe’s doing.

The problem, of course, was that lobotomy was not meant for what Rosemary had—essentially a low IQ.  But Joseph Kennedy, in conjunction with her doctors, had convinced himself she had an “agitated depression,” and thus was a candidate.  That Freeman was a zealot for the operation, as is well documented in journalist Jack El-Hai’s The Lobotomist (2005), did not help.  Most tragically, when Rosemary underwent her lobotomy some time in November 1941, something went “horribly awry.”  Patients were kept awake during the procedure and asked to talk or sing to help guide the surgeon’s scalpel.  But in Rosemary’s case, when Watts made his final cut of brain tissue, she became incoherent.  “The operation,” Larson writes, “destroyed a crucial part of Rosemary’s brain and erased years of emotional, physical and intellectual development, leaving her completely incapable of taking care of herself.”

The rest of Rosemary discusses her life after the lobotomy until her death in 2005.  She spent most of these years at a Catholic residential institution in Wisconsin.  Most cruelly, family members rarely visited, trying to render invisible what had happened.  To the Kennedys’ credit, in later years they corrected this error and brought Rosemary for visits to Hyannis Post and other family outposts.  There are only a few photographs in the book from this later era, but they help to humanize the woman who suffered for so long.

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Atul Gawande’s Being Mortal is both ambitious and synthetic, qualities that well suit his difficult subject, death.  In Western culture, there are taboos against death because it fits neither into post-Enlightenment notions of progress and perfection nor into medical notions of control, even domination of human biology. A surgeon and an investigator, Gawande draws on his patients, his family, and travels to various hospitals and other caregiving places in order to confront death and see how approaches such as hospice and palliative care can improve our understanding, acceptance, and preparation for death.

Gawande has harsh words for contemporary medicine, the supposed caregiver for the dying and their families.  Relying heavily on technique and industrial models, it ignores the deep needs of the dying and provides, instead, versions of “warehoused oblivion” (p. 188), for example long, futile stays in ICUs.

As opposed to traditional societies like India, Westerners prize the independence of individuals, a status that is, of course, never permanent. In the chapter “Things Fall Apart,” Gawande describes how longer lives are now the norm but they include chronic illnesses and inevitable decline in vitality.  Our deaths are now routinely in hospitals, not at home, and often extended—sometimes brutally—by technical support and unwillingness of doctors and families to stop aggressive treatment.       
       
Also, sadly, there are fewer and fewer geriatricians at a time when there are more and more elderly.  A good geriatrician takes a long time with each patient, is not well paid, nor does s/he do income-generating procedures. Worse yet, some training programs are being discontinued.  

Gawande illustrates his ideas with case studies of patients and describes, from time to time in the book, the elderly journeys of his grandmother-in-law and his own father.  These passages make vivid the abstract ideas of the book. But it’s not just elderly patients who face death: health calamities can come to anyone, for example, a 34-year-old pregnant woman found to have a serious cancer. Various treatments are tried without success, but family and doctors act out “a modern tragedy replayed millions of times over” (p. 183) of a medically protracted death. Finally her mother calls a halt to treatment.
               
Family members often bear a heavy load in caring for a sick elder, but many nursing homes are often worse, designed for control, not support of the patients. 

The chapter “A Better Life” describes the first in a series of places that offer much improved settings for the elderly, with birds, animals, gardens, and, in general, richer lives that have a sense of purpose.  Gawande describes hospice care, palliative care, and advanced directives (including Do Not Resuscitate orders) as improvements needed to break the norms of “treat at all costs.” The old roles of Dr. Knows-Best and Dr. Informative need to give way to physicians and others who talk with patients and families about their values, their wishes for the last days, and their preparations for death. In short, aggressive treatment should no longer be the “default setting” for hospital care.     
        
The book ends with a dozen moving pages about the death of Gawande’s father. The “hard conversations” have clarified his wishes, and hospice care has provided “good enough” days.  Pain control has done well. Then, finally, “No more breaths came.” The family travels to India to spread his ashes on the Ganges. 

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Lily Daw and the Three Ladies

Welty, Eudora

Last Updated: Mar-02-2015
Annotated by:
Donley, Carol

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

Lily Daw is a mentally retarded young woman who lives by herself but is watched over by the women in the small town. Since Lily has become sexually mature, the women decide she really does not know how to take care of herself, so they write to get her accepted in an institution for the mentally retarded.

When they visit Lily, they discover that she has been out on a date the previous night with the xylophone player from a traveling show. Lilly announces she is going to get married. The women are shocked and worried, but Lily seems quite happy. This wry story ends with Lily going to the Justice of the Peace with the xylophone player who intends to give her a better life than she would have had in the institution.

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Summary:

Carol Levine's anthology of stories and poems about the intimate caregiving that takes place within families and among friends and lovers reminds us that the experience of illness reaches beyond clinicians and patients. It can also touch, enrich, and exasperate the lives of those who travel with patients into what Levine calls the land of limbo. This land oddly resembles the place where some Christian theologians believe lost souls wander indefinitely between heaven and hell. For Levine the limbo of familial caregiving is an unmapped territory. In it caregivers perform seemingly endless medical, social, and psychological labors without professional training and with feelings of isolation and uncertainty. Caregiving in this modern limbo, created by contemporary medicine's capacity to extend the lives of those with chronic conditions and terminal illnesses, has become, according to Levine, "a normative experience" (1).

By compiling this useful selection of well known and less familiar stories and poems, Levine increases the visibility of the experience of familial caregiving among works of literature about medicine. While illness literature is typically classified by disease or disability, Levine focuses instead on the relationships between caregivers and those being cared for. Her collection organizes the literature into five parts: Children of Aging Parents; Husbands and Wives; Parents and Sick Children; Relatives, Lovers, and Friends; and Paid Caregivers who assist families. The literature in each section tends nonetheless to represent particular conditions: dementias, including Alzheimer's disease, cancer, and frailty in the first two sections; childhood cancer, hyperactivity, and mental illness in the third; AIDS in the fourth. 

Probably the most familiar and powerful works include Rick Moody's "Whosoever: The Language of Mothers and Sons," Ethan Canin's "We Are Nighttime Travelers," Alice Munro's "The Bear Came over the Mountain" (the source for the film "Away from Her"), Lorrie Moore's "People Like That Are the Only People Here," and several poems: Mark Doty's "Atlantis" and selections by Donald Hall, Jane Kenyon, James Dickey, and Raymond Carver.

These and the less familiar works offer disparate responses from both caregivers and those they care for. The narrator of Tereze Gluck's "Oceanic Hotel, Nice" thinks "what a bad person I was to not even want to touch his feet. . . it made me shudder" (220). The wife in Ann Harleman's "Thoreau's Laundry" cannot place her husband with Multiple Sclerosis in a nursing home because "his presence, however diminished, was as necessary to her as breathing" (116). The caregiver in "Starter" by Amy Hanridge "didn't want to be the person people feel bad about" (180).  Several stories explore the limits of obligation. As is often the case, the son in Eugenia Collier's "The Caregiver" is sick himself, failing to schedule his own doctor's appointments and dying before his mother. Marjorie Kemper's witty, exuberant "God's Goodness" plays out an unexpected relationship between a dying teenage boy and his Chinese immigrant aide, while his parents remain in the background.

Carol Levine's brief introduction to the collection explains that she excluded excerpts from memoirs and selected only very recent literature, almost all from the past three decades. A Resources section at the end includes some introductory medical humanities resources and practical resources for caregivers.

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On Bittersweet Place

Wineberg, Ronna

Last Updated: Nov-18-2014
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This story centers on Lena, an immigrant teen from Ukraine, whose entire family has been traumatized and uprooted by family deaths during a violent pogrom.  Relocated to Chicago, in a tiny apartment on Bittersweet Place, the family struggles to survive in the years prior to World War I. Wineberg’s tale of disrupted life and resettlement is weighted by formidable issues that stretch beyond the ordinary range of family experiences. 

Lena, the intelligent, highly observant and resilient adolescent, narrates an unvarnished tale of survival for the extended family clustered together in this strange new world, but especially for herself.  While the family’s economic and financial circumstances are difficult, her own life is made worse by an unkind teacher, mean-spirited classmates, and hormonal impulses.  Her uncle touches her inappropriately, a favorite uncle goes mad, a cousin dies, and her mother, who is unfamiliar with the new world setting and mores, drives her crazy. 

Nevertheless, Lena is a clear-eyed survivor exhibiting a surprising toughness of character and determination. For example, her introduction to sex is far more direct than might occur with most girls of that time.  In addition, when her teacher fails cruelly to support her artistic talents, she shows amazing defiance.   When she discovers that her father has a beautiful female friend, undoubtedly a lover, her consideration of this circumstance does not render the crushing blow that might be expected.  In retrospect she is more adult, more mature than most young women might be in each of these situations.  She is a remarkable young woman with a spirited edge.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Collection (Essays)

Summary:

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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Epileptic

B., David

Last Updated: Nov-10-2013
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

First published in France as a six-volume series from 1996-2003, this narrative is often referred to as an autobiographical graphic novel, but it is more accurately described as a graphic memoir. The author, born Pierre-François Beauchard, tells and draws the story of his family's life with the author's older brother, Jean-Christophe, whom we meet on the first page, in the year 1994: "It takes a moment for me to recognize the guy who just walked in. It's my brother . . . The back of his head is bald, from all the times he's fallen. He's enormously bloated from medication and lack of exercise." Flashback to 1964 when the author is five years old and his seven-year-old brother begins to have frequent grand mal epilepsy seizures. There follows the parents' mostly fruitless search for treatment to control the seizures, including: possible brain surgery which Jean-Christophe refuses in favor of an attempt at zen macrobiotics (this seems to work for six-months), consultation with a psychic, Swedenborgian spiritualism, magnetism, alchemy, exorcism by a priest, psychiatry (a different form of exorcism!).

Jean-Christophe's illness transforms family life as other children mock and fear the boy, the family moves to an isolated area, joins communes, and attempts to cope with Jean-Christophe's increasingly disturbed and disturbing behavior that alternates between passivity and physical aggression. The author has vivid visions and dreams and changes his name to David ("a symbolic act. I've won the war [against the threat of acquiring epilepsy" (164)]; his sister Florence suffers from constant anxiety; his mother grieves for many months after her father dies. As an adolescent and young man Jean-Christophe spends time in several institutions for handicapped individuals as well as at home, where he lives a desultory existence that is interspersed with violence toward the author and his father.

David escapes to Paris, living in a studio apartment paid for by his father, reading, writing stories, drawing, and attending classes at the Duperre School of Applied Arts. "I had to draw and write constantly. I had to fill my time in order to prevent my brother's disease from reaching me" (276). He is lonely but avoids people, feels guilty for neglecting his brother and ‘picking on' him yet is fearful that he too will be taken over by epilepsy, or death. Equally upsetting is when David discovers writings by Jean-Christophe: "He speaks of his despair and loneliness and the words might as well have come from my pen" (316). On and off, in moving displays of empathy, the author attempts to understand what happens to his brother during the seizures -- is he conscious, where does he go, does he die temporarily?

Within the narrative are intercalated multigenerational family histories that include two world wars, and European philosophical and cultural movements that influenced his parents and their search for treatments. The final section of Epileptic relates in words and images the author's adult life as he becomes a commercial artist; struggles through several relationships with women; his own infertility; his ever-present confusion, anger, and misery about his brother's illness; and his founding with five colleagues of the independent publishing house, L'Association: "It's the creation of L'Association that saves me" (327).

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A Diary Without Dates

Bagnold, Enid

Last Updated: Oct-24-2013
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

"A Diary Without Dates" is Enid Bagnold's World War I memoir of her experiences over roughly a year and a half as a member of the V.A.D. (Voluntary Aid Detachment), or what we would today call a nurse's aide. Assisting the Sisters (both lay and religious nurses), the author attended to the day-to-day (mostly non-clinical) needs of wounded soldiers (almost entirely British) recovering from often horrific wounds in the Royal Herbert Hospital in Woolwich, 8 miles southeast of London. These poor men often stayed in the Royal Herbert for many months. It is a slim volume which the author wrote at the age of 28 and published in 1918. Divided into three arbitrary divisions ("Outside the Glass Doors", "Inside the Glass Doors", "'The Boys ...'") of roughly equal content (the last devotes, on the whole, more detail to individual "Tommies", referred to as "The Boys"), the book recounts the author's observations and fairly critical views of the relationships between nurses, physicians, V.A.D's, and visitors. Apparently the book was not well received by war authorities, leading to Bagnold's dismissal from her position.

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Summary:

This book describes San Francisco’s Laguna Honda Hospital, where Victoria Sweet worked as a doctor for 20 years. In the tradition of the Hôtel-Dieu in Paris (literally “God’s Hotel”), Laguna Honda cares for the sickest and poorest patients, many staying there indefinitely because there is no alternative for them. Sweet learns from her long experience at Laguna Honda that “Slow Medicine” has benefits, that a holistic or unified view of patients works best, and that the reductionism and specialization of modern medicine has limitations and costs. During these years Sweet becomes fascinated by the medieval abbess Hildegard of Bingen and earns a Ph.D. focusing on medieval medicine. At the same time (and increasingly) various forces—economic, legal, political, bureaucratic—cause many changes at Laguna Honda, mostly contrary to Sweet’s vision of medicine.

            Part history, part memoir, part social criticism, the book is informative, entertaining, and important for its discussion of the care of our least-well-off citizens and for its perspectives on modern, Western medicine.         

            There are three intertwining strands to this engaging book: Sweet’s medical evolution as a physician, the changes in Laguna Honda, and her investigations of Hildegard of Bingen and other spiritual matters.

            Sweet joins up with Laguna Honda initially for only two months, but she finds the hospital and her work there so fascinating that she stays for 20 years. As an almshouse, Laguna Honda takes care of indigent patients, most with complicated medical conditions, including mental illness and dependencies on alcohol and/or drugs. Many of these cases come from the County Hospital with continuing (but not carefully reviewed) drug treatments. Every 15 or 20 pages, Sweet describes the dilemmas of a particular patient, and her medical (and personal) attention to that patient. The cases are vivid and instructive.

   Clearly Laguna Honda is a major figure on the book; we can even consider it (or “her”) a beloved character and a teacher to the young Dr. Sweet, who learns three principles from her work there: hospitality, community, and charity. 

Because Laguna Honda is old-fashioned in many ways, Sweet reads her own X-rays, goes the to lab to see results, and spends large amounts of time with each patient. Laguna Honda has an aviary, a farm with barnyard, and a solarium; such features help to heal the whole person. While respectful of modern medicine, Sweet slowly learns that a careful review of a patient through Slow Medicine is more accurate and more cost-efficient than standard, reductionist, high-tech medicine. She comes to respect approaches from “premodern” medicine, including that of Hippocrates and Hildegard.

  The second strand is the evolution of Laguna Honda itself. Sweet describes a variety of pressures: the recommendations of consulting firms, rulings from the Department of Justice, a lawsuit, financial difficulties (including fiscal mismanagement), administrators focused on a narrow concept of efficiency, a utilization review board, forms and more forms, and a pervasive sense that modern (including Evidence Based Medicine) is always good. All these and more create a “relentless pressure squeezing the hospital’s Old Medicine into the New Health Care” (p. 322). Sweet demonstrates that her Slow Medicine can actually save money in the long run. Confident that her way is better, she proposes an “ecomedicine unit” that she would match against the modern, “efficient” units in a two-year experiment. (For more information on her concept of ecomedicine proposal, see http://www.victoriasweet.com/.)

            As the hospital is “modernized,” many important features of the old place are gone and many “new and improved” aspects don’t work. Somehow there are no rooms for physicians in the new building while there is plenty of space for administrators and managers. A sophisticated computer system doesn’t work. Sweet doesn’t say “I told you so” directly, but we get the picture.

            The third strand is Sweet’s investigations of spirituality and pilgrimage. She is fascinated by Hildegard’s notions of the healing power of nature, the ability of the body to heal itself, and wholeness as an aim for a person and for a community. Sweet attends a Swiss conference on Hildegard. She hikes the pilgrimage route from France to Santiago de Compostela in four installments and considers notions of pilgrimage. She feels called to pursue her ecomedicine project and to write this book.           

            By the end of the book, both Sweet and Laguna Honda have changed and are now headed in different directions. 

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Annotated by:
Poirier, Suzanne

Primary Category: Literature / Nonfiction

Genre: Investigative Journalism

Summary:

When Lia Lee's sister slammed the front door to their Merced, California, apartment, Lia experienced her first in several years of increasingly severe seizures. The Lee family knew that the noise had awakened a dab, an evil spirit who stole Lia's soul. They also knew, in the midst of their grief for their infant daughter, that people suffering from "the spirit catches you and you fall down" often grew up to be healers in their Hmong culture.

Not surprisingly, the physicians and other health professionals who worked with Lia and her parents over the next seven-plus years did not share this diagnosis--most of them did not even know about it. Fadiman melds her story of Lia, the Lees, the family's physicians and social workers, and countless other people who enter the Lees' life (usually uninvited and unwelcome) with the long history of the Hmong people, their religion and culture, and their more recent lives as refugees from war in Laos and Cambodia (and the troubled history of their relationship to the U.S. military system).

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