Showing 61 - 70 of 827 annotations tagged with the keyword "Caregivers"

Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

This is a compendium of original critical essays on a wide range of topics written by a diverse group of scholars of what has traditionally been called "medical humanities." The editors argue for a change of name to "health humanities," pointing out that "medical" has a narrow frame of reference - evoking primarily the point of view of physicians and their interaction with patients, as well as the institution of biomedicine. Such a focus may exclude the myriad allied individuals and communities who work with patients and their families. The editors quote Daniel Goldberg, who notes that the health humanities should have the primary goal of "health and human flourishing rather than  . .  the delivery of medical care" (quoted on page 7).

The three editors are innovative contemporary scholar-educators in the field of medical/health humanities. They advocate Megan Boler's "pedagogy of discomfort" (quoted on page 8) and wish to provide students and educators "an opportunity to examine critically the origins and nature of their personal beliefs and values, beliefs and values embedded in the curriculum and the learning environment, as well as institutional policies - all of which intersect" . . and influence quality of care (8). In their own work and in this Reader the editors favor an approach to health humanities education and research that "challenge[s] the hegemony of a biomedicine that contributes to disparities and the discrimination of persons who don't quite fit the codified and naturalized norms of health."

The book is divided into 12 parts, each comprising three or four chapters: Disease and Illness, Disability, Death and Dying, Patient-Professional Relationships, The Body, Gender and Sexuality, Race and Class, Aging, Mental Illness, Spirituality and Religion, Science and Technology, and Health Professions Education. At the end of each section there is "an imaginative or reflective piece" on the topic. A wide range of disciplines is represented, including disability studies, history, bioethics, philosophy, literature, media studies, law, and medicine. Some of the authors are well-known and have been practicing their profession for many years (for example, Arthur Frank, Sander Gilman, Anne Hudson Jones, Martha Montello, John Lantos) while others have entered the field more recently and are gaining increasing attention (for example, Rebecca Garden, Daniel Goldberg, Allan Peterkin, Sayantani DasGupta).

The Reader is well documented: there are footnotes at the end of most chapters, a references section of 50 pages, notes on contributors, and a 72-page index.

View full annotation

Polio: An American Story

Oshinsky, David

Last Updated: Sep-16-2014
Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: History

Summary:

 In his introduction, the author summarizes the history of polio’s first appearance as an epidemic in the United States, the ensuing research, subsequent applications of new information, attempts at abatement and ultimate success in the development of preventative measures.

Embedded in the successes and failures of the research applications are the details of human interactions.  Their impact on the goal of achieving near extinction of polio in America constitutes a dramatic subplot, which the historian adroitly weaves into the work.

For the reader who has only a sketchy knowledge of this important period in medical research, this history provides details of human exchanges, conflicts and resolutions necessary to bring the scientific developments to fruition.  Central among the multiple struggles rests the basic disagreement between Jonas Salk and Albert Sabin, two of the most prominent scientists working against the clock to develop the most effective and safest form of immunization.  Each new surge of the disease added to the urgency of the problem as well as to the question of the best solution.  Salk felt strongly that the immune system should be stimulated by a killed virus preparation, while Sabin was equally convinced that only the living virus could provide this need.  Each view had its own cadre of supporters and of opponents.

Funding issues also troubled those fighting the polio epidemics.  The March of Dimes is credited with raising a record $55 million in the fight against polio in early 1954, becoming the first major infectious disease battle to benefit from a concerted public awareness campaign and demonstrating the power of such volunteer driven efforts to supplement public and other private funding efforts.

View full annotation

Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In the course of sharing her own experience of breast cancer diagnosis and treatment, the writer offers personal reflections on coping with each of a number of specific challenges most American women with breast cancer face:  desperation, fear, sadness, anger, guilt, overwhelming choices about treatment, side-effects of treatment, grief, adjusting to a new "normal," shifts in relationship, and rethinking spirituality.  She raises hard questions in a compassionate way, encouraging readers to use the experience of illness as an occasion for examining and growing into a new phase of psycho-spiritual maturity.

View full annotation

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. 

View full annotation

Dying in Character

Berman, Jeffrey

Last Updated: Aug-31-2014
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

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. 

View full annotation

Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

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.

View full annotation

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.

View full annotation

Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Cartoonist Roz Chast's memoir is a rich, satiric, forthright, and at times deeply disturbing exploration of how she negotiated the decline of her aging parents. Disturbing because the description of all the elements with which she had to deal in easing them toward death highlights the myriad difficulties and complexities many of us will also face. Her account is centered on her relationship with her parents, moving back and forth between her childhood (unhappy) and the more recent past. Chast brings to life her father and mother's disparate personalities and makes no bones about her fraught interaction with them, especially with her mother, and her ambivalence about having to take responsibility for helping them in their final years,.

The memoir is divided into 18 chapters plus introduction and epilogue. The book has elements of multi media presentation, consisting of cartoons accompanied by extensive text in "balloons"; additional handwritten commentary - sometimes occupying an entire page; photographs - of family, and rooms in her parents' Brooklyn apartment plus items found therein; reproductions of her mother's poetry, typed and handwritten; and, finally, drawings (not cartoons) of her mother in her last days.

Chast notes that she is an only child and that her parents were older than most parents while she was growing up. The implication: the burden of taking responsibility rested solely on her and became an issue while she was raising her own family, when her parents were in their 80s. Chast makes clear that she was completely unprepared for everything that would be involved and that her parents had done nothing and would do nothing to make their own preparations for disability - "Can't we talk about something more pleasant?"

Chast's story begins with her impulsive visit - after an absence of 11 years- to the Brooklyn apartment where she grew up and where her parents still reside. She is appalled by the grime and clutter they live in. A few years later, when her parents are 90, Chast reluctantly visits more regularly, speaks to them daily on the phone, and hopes their lives will continue uneventfully and "maybe they'll both die at the same time in their sleep" (22). As Chast visits her parents more frequently the idiosyncrasies that used to irritate her still irritate her and there is no escape - they are too old and needy to run away from. Complicating the situation, her parents deny their neediness and reject most interventions that might help them in their daily lives.

When her parents are 93, after her mother falls a few times and her father shows increasing signs of forgetfulness, Chast manages to persuade her parents that they should together consult an "elder lawyer" - a specialist in "the two things that my parents and I found it most difficult to discuss: DEATH AND MONEY" (38). Even with the legalities this step puts in place, Chast feels overwhelmed when her mother is hospitalized for acute diverticulitis, leaving Chast to care for her increasingly senile father, prepare for her mother's return home, and worry about how her parents will be able to live on their own. The author makes fun of her helplessness: when she arranges for an ambulette to take her mother home from the hospital Chast congratulates herself, admitting "I had a pathetically large amount of pride in myself for doing things like that" (84).

A year later it is clear to all concerned that Chast's parents cannot continue to live alone. Chast is fortunate to quickly find a spot in an assisted living facility ("The Place") close to her own home. After settling her parents there she must sort through and empty out their Brooklyn apartment. A major undertaking. After a while "I was sick of the ransacking, the picking over and deciding, the dust, and the not particularly interesting trips down memory lane" (121). At the same time, Chast must arrange for her parents' aides, buy furniture and other items - total costs were high and not covered by insurance - "it was enraging and depressing" (128); how long her parents' savings and pensions would cover their expenses became a constant worry for Chast. Money worries became more acute after Chast's father fell and broke his hip, needing additional daily care. "I felt like a disgusting person, worrying about the money" (145). At the same time, Chast mourns her father's obvious decline and resents that her mother is insensitive to her feelings "it was, as it always was, completely about her" (141).

Chast's father dies (miserably), aged 95; her mother lives for two more years, in and out of a nursing home, not eating, rallying under the care of a hired attendant, then fading again. During this period, as the mother herself notes, "her brains were starting to melt." Chast feels the need to "have a final conversation with my mother about the past" (201), expressing the wish that they could have been better friends while Chast was growing up. The response is not what Chast had hoped for, and she is surprised by how upset she feels. Yet a week before Chast's mother dies, the mother declares love for her daughter.

When her mother is no longer communicative, Chast draws her as she lies in bed - Chast's manner of communication, bringing to mind other artists who drew dying loved ones in their final days (see annotations of Sue Coe's "The Last Eleven Days" and Ferdinand Hodler's "The Dying Valentine Godé-Darel" ). In the epilogue, Chast explains her decision to store the "cremains" of both parents, separately, in her bedroom closet. "Maybe when I completely give up this desire to make it right with my mother, I'll know what to do with their cremains. Or, maybe not" (227).

View full annotation

Calcedonies

Nisker, Jeffrey

Last Updated: Apr-08-2014
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Plays

Genre: Play

Summary:

The play has two characters: Ruth and Friend (who is a male doctor).

Ruth is an engaging, straight-talking quadriplegic who can zip and dance with her chin-operated wheelchair and takes delight in terrorizing medical staff both physically and verbally. She wants to write poetry and is waiting for a device to make it possible for her to use a computer. She keeps developing bedsores that threaten her life and require long admissions to the hospital before they will heal. She desperately wants to live no matter what happens, as she feels that having no mind would be worse than having no body.

Friend is a male doctor with children who is ashamed of having examined her while she was unaware. Burdened with his guilt, he asks to be her “friend.” Ruth is skeptical and runs circles around him, but eventually comes to trust him and believe in his sincerity.

She makes him a witness to her advance directive to instigate all heroic measures, as she is afraid of the kindly "ethical" and cost-effective arguments not to treat the disabled. But Ruth dies horribly from sepsis, and Friend is helpless to prevent it. She never obtains the device that would have allowed her to put her poems into printed words.

View full annotation

Summary:

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.

View full annotation