The Soul of Care: The Moral Education of A Husband and a Doctor

Kleinman, Arthur

Last Updated: Feb-10-2020

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

A dramatic prologue depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is ill with Alzheimer’s disease and does not, for that moment, recognize him. The following chapters provide a long flashback, beginning with Arthur’s family background, his youth as a tough street kid in Brooklyn, his medical education, and his marriage to Joan. We learn of their work in China, travels, and professional success. Arthur gradually realizes that the US health care system has become “a rapidly fragmenting and increasingly chaotic and dysfunctional non-system” (p. 126). Further, he sees a reductive focus on patients as mere biological entities, ignoring their personal, familial, and cultural natures. As a result, “Caregiving in medicine has gone from bad to worse.”

Joan suffers from an atypical kind of Alzheimer’s that increased over “that dismal ten years” (p. 156) with Arthur providing care to her, at cost to himself. There is no home health aide, no team approach with doctors, indeed no wider interest in her care other than the state of her diseased brain. Kleinman vividly describes the toll on her and on him.

Kleinman is aware of the privilege he has as a Harvard doctor, well known for his psychiatric work, his teaching and writing, and his wealth—in contrast to other patients and families. Some patients go bankrupt from medical bills.

Visits to nursing homes reveal a wide range of social conditions, contexts, and levels of care; the best have a sense of “moral care” (p. 200). Joan’s final days are hard. Supportive family members agree to her living will and healthcare proxy for morphine pain control only. She dies, apparently “at peace” (p. 232).

In the last pages Kleinman introduces the notion of “soul” as “essential human interactions” (p. 238). He discusses some of the limits of medicine (see paradoxes below) but also praises local efforts to improve humane care, such as team approaches, uses of narrative medicine, and medical/health humanities programs.

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The Edge of Every Day

Sardy, Marin

Last Updated: Jan-25-2020

Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Edge of Every Day is the memoir of a woman who comes from a “multiplex” family, in which schizophrenia is manifested in successive generations.

The book consists of a series of essays. Some, on topics ranging from gymnastics to building altars, were first published independently and do not appear (at least at first glance) to be linked. The choppy effect this produces speaks to the disorganized thinking that psychotic persons experience. Other essays propel the tragic narrative of family members slipping into psychosis. At the age of ten, the author Marin Sardy, watches as the “shapeless thief” of schizophrenia steals her mother’s personality away. Later, as she reaches her thirties, she witnesses her younger brother succumb to an even more pernicious illness.

Despite Sardy’s mother’s conspicuous symptoms, (she advises her daughter to move to Pluto and informs her that her father has been swept away in a tsunami and replaced by another man), she functions just well enough to avoid being compelled to accept treatment. Thus, no one can stop her from going through a large inheritance and becoming destitute.

Sardy’s brother Tom suffers his first psychotic break in his 20’s and then rapidly deteriorates. He repeatedly “cheeks” his meds and falls through the cracks of Anchorage’s mental health system. The author and her family scour the streets, hoping to lure him inside for a shower or hot meal. As the weather worsens, they can only hope he will land in prison if it means not being exposed to the Alaskan elements. Ultimately, the young man, who once sailed through college with A’s, commits suicide in the bathroom of a psychiatric facility.

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A Time To Die: Monks on the Threshold of Eternal Life

Diat, Nicolas

Last Updated: Jan-21-2020

Davis, Cortney

Primary Category: Literature / Nonfiction

Genre: Journal

A Constellation of Vital Phenomena

Marra, Anthony

Last Updated: Jan-12-2020

Field, Steven

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Anthony Marra’s debut novel (published in 2013) is set in Chechnya, the rebellious Caucasus republic that broke away from Russia in 1994, was in short order mired in two wars thereafter, and ultimately lost its independence and was re-incorporated into Russia as a semi-autonomous “federal subject” state. Marra does not ease us into his story, but propels us headlong into it; it is 2004, and eight-year-old Havaa awakens to find that her father Dokka, suspected of aiding Chechen rebels, has been taken away by Russian troops, who have also burned her house to the ground. She is alive only because Akhmed, her neighbor and her father’s friend, has spirited her out of her house in the middle of the night and hidden her in his. Akhmed takes it upon himself to protect Havaa; he knows that the soldiers will be looking for her, because even though the official wars are over, Chechnya remains in the midst of a brutal battle for control, and the policy of the state is to “disappear” not only those it perceives as its enemies, but also their family members.

Akhmed manages to get Havaa to the abandoned local hospital, where he believes she will be safe. The hospital is staffed only by a smart, tough, and competent surgeon named Sonja, assisted by a nurse. Sonja is an ethnic Russian from the area who trained in London and then returned to her homeland. She agrees to shelter Havaa on the condition that Akhmed, who trained as a doctor but is painfully aware of his inadequacies in that profession (he wanted to be an artist), stay on also as her assistant surgeon. Soldiers and civilians on both sides arrive in need of care in a hospital barely functioning, with little in the way of staff or supplies.

Sonja meanwhile is searching for her sister who has disappeared into the chaos of the Chechen wars; she believes that Natasha is alive, but hasn’t heard of her, or from her, in years (we will, in the course of the novel, hear Natasha’s story and learn of another side of the underbelly of this war). She comes to believe that Akhmed may hold a key to Natasha’s whereabouts, and Sonja of course holds the key to whatever measure of safety exists for Havaa—and thus for Akhmed as well. Other locals, a local Chechen historian, his turncoat son, and various governmental and non-governmental functionaries round out the cast in the novel. Akhmed must negotiate in a world where anyone could be an informer, and one person clearly is; where the price for falling into the wrong hands could be death or worse; where federal troops and rebels vie to outdo each other in brutality; and where the rest of the population spends every waking minute simply trying to survive in a lawless society and a landscape gutted by ongoing strife. When the various narrative arcs ultimately link up the ending is a powerful one.

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The Little King

Rushdie, Salman

Last Updated: Dec-19-2019

Galbo, MA, MILS, Sebastian

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

Dr. R. K. Smile, MD, founder of Smile Pharmaceuticals, Inc. (SPI), enjoys a sudden lurch into fortune and celebrity. Dubbed the ‘Little King’ by his Atlanta-based Indian community, Dr. Smile is a towering medical authority, philanderer and philanthropist, known to be both generous and avaricious. His pinnacle pharmaceutical coup, the patent that has earned him billionaire status, is InSmile™, a sublingual fentanyl spray designed for terminally ill cancer patients. Dr. Smile’s entrepreneurial vim, however, hardly stems from benevolent medical research, but rather an ‘excellent business model’ that he observed on a visit to India during which a Bombay ‘urchin’ handed him a business card that read, ‘Are you alcoholic? We can help. Call this number for liquor home delivery.’ The blunt practicality of building a market around sating addiction strikes the doctor as entirely sensible. Often wistful about India’s ‘old days,’ Dr. Smile fondly recounts the insouciance of neighborhood dispensary hawkers, their willingness to ‘hand out drugs without a doctor’s chit.’ Though admitting that ‘it was bad for [their] customers’ health but good for the health of the business,’ Dr. Smile yearns to replicate a similar culture of delinquent pharmacology, an unregulated market capable of profiting from supply-and-demand forces but indifferent to the wellbeing of its patrons.

In the meantime, Dr. Smile’s wife, Mrs. Happy Smile, a simpering and daft socialite, envisions grand branding prospects that will globalize the Smile name through ostentatious publicity—inscribed name placards at the ‘Opera, art gallery, university, hospital […] your name will be so, so big.’ She refers to the worldwide reputation of the OxyContin family, the proliferation of the family’s name and esteemed place among prestigious cultural institutions: ‘So, so many wings they have,’ she says, ‘Metropolitan Museum wing named after them, Louvre wing also, London Royal Academy wing also. A bird with so, so many wings can fly so, so high.’

InSmile™ sales drive Dr. Smile’s burgeoning drug trade, as his prescription becomes preferred to conventional OxyContin highs due to its ‘instant gratification’ in the form of an oral spray. While SPI fulfills special house-calls for American celebrities and customers in ‘gated communities from Minneapolis to Beverly Hills,’ it also ships millions of opioid products to places such as Kermit and Mount Gay, West Virginia—communities, outside fictional contexts, that bear real-world vestiges of the opioid epidemic (West Virginia has the highest rate of drug overdose in the United States). Through a lecture series scheme, Dr. Smile bribes respected doctors to publicize and prescribe the medication, further entrenching the dangerous drug in medical circles.

As the SPI empire collapses following a SWAT-led arrest of his wife, Dr. Smile muses indignantly on his reputation and the ingratitude of his clients. Tugged again by nostalgia for the old country, he justifies his drug trafficking by likening it to quotidian misdemeanors, instances when one could circumvent the inconveniences of India’s law by knowing how to pull the venal strings of corrupt systems—like cutting a long ticket queue at the rail station, he says, by paying a little extra at a backyard office; or bribing government officers to stamp customs papers required to ship restricted antiques abroad—‘We know what is the oil that greases the wheels.’ With this deleterious mindset, combining nostalgia and entrepreneurial greed, Dr. Smile’s future is uncertain, but he is resolved to return—after all, he says, ‘I have lawyers.’

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Breaking & Mending: A Junior Doctor's Stories of Compassion and Burnout

Cannon, Joanna

Last Updated: Oct-21-2019

Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

A British physician-writer reflects on her topsy-turvy medical training emphasizing the mental and emotional burden of becoming a doctor. In 22 brief chapters with titles including "The Darkest Hour," "Buried," and "The Wrong Kind of Kindness," a struggle between hope and despair furiously plays out - in patients, hospital staff, and the narrator.

Dr. Jo (as one patient calls her) remembers interviewing for medical school admission, the difficulty dissecting a cadaver, starting lots of IV's, dutifully toting an almost always buzzing pager, and breaking bad news. She shares with readers her own serious car accident with resulting facial injuries. She comments on the underfunded UK National Health Service (NHS) that is "held together by the goodwill of those who work within it, but even then it will fracture" (p104).

Anecdotes of memorable encounters are scattered throughout the narrative: a fortyish woman in the emergency department who describes a fast pulse and sense of impending doom diagnosed as having an anxiety attack who ten minutes later suffers a cardiac arrest, a man with severe schizophrenia, a suicide, an elderly blind person, a young woman with metastatic breast cancer.

But the lessons that have stuck with her are primarily dark and somber ones. "Sacrifice and the surrender of the self are woven into the job" (p77). She realizes that "perhaps not all good doctors are good people" (p125) and that as wonderful and essential as the virtue of compassion is, "compassion will eat away at your sanity" (p16). She chooses psychiatry as a specialty where kindness, empathy, creating trust with patients, and careful listening work wonders for people. "I learned that saving a life often has nothing to do with a scalpel or a defibrillator" (pp13-14).

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Dying of Whiteness: How the Politics of Racial Resentment is Killing America's Heartland

Metzl, Jonathan

Last Updated: Oct-08-2019

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This illuminating and disturbing book explores how various forms of white supremacy became expressed in policies, laws, and elected officials, such as Donald Trump. Physician and sociologist Metzl details social changes in Missouri, Tennessee, and Kansas, where white Americans backed changes that, ironically, dramatically harmed them with gun suicides, school dropouts, worse healthcare, and shorter life spans. For Metzl, “Whiteness” refers not to skin color but to a political and economic system of white privilege.

Metzl's thesis that: “Trump supporters were willing to put their lives on the line in support of their political beliefs” was, in fact, a sort of “self-sabotage” (pp. 5-6). While a conservative political movement fostered white racial resentment, largely in lower-income communities, the mainstream GOP did its part by crafting policies against the Affordable Care Act, higher taxes, and restrictions on guns. An atmosphere of polarization and political stasis grew. Metzl writes: “Compromise, in many ways, coded as treason” (p. 11).

Metzl focuses on the examples of Missouri, Tennessee, and Kansas to “suggest how the racial system of American fails everyone” (pp. 16, 20). He visits each state, leading focus groups, interviewing formally and informally, reading newspapers, and inductively formulating concepts that seem to explain the nonsensical behavior of rejecting helpful programs. For example, because “risk” in Missouri has become a code name for possible attacks by black people, white people buy guns, especially when restrictions are removed. Many white men feel that a gun (or many guns) restores their privilege, but suicide of white males, often low-income, goes up. Metzl’s statistics and charts show contrasts with other states with stricter laws and lower suicide rates. He calls for preventive medicine to lower such deaths.

For Tennessee, the Affordable Care Act offered many benefits to poor or middle-income people, but Republicans (and especially Trump) attacked it as big government over-reach, socialism, exorbitant cost, a program that would help minority people, for example “welfare queens.” “Cost” became a proxy for the “we don’t like it,” even when the economics would be favorable for good healthcare for all. Blacks were generally in favor of ACA, but white blue-collar men swore by their independence and autonomy. Neighboring Kentucky accepted ACA, and ten graphs included in the book clearly chart the better outcomes for Kentucky in such areas as insurance coverage, death rates, and seeing a doctor.

Metzl returns to Kansas, where he grew up and recalls the pride Kansans had in their state. Republican Governor Sam Brownback enacted massive tax cuts with large reductions to state services and school funding, an “experiment” in “epic defunding.” The GOP, Tea Party, Koch brothers, and “trickle down” theories all played a part in benefiting the wealthy financially, while minority and lower-income groups paid more. Infrastructure, such as roads, suffered. Untested charter schools collected wealthy white students, while public schools plunged in funding, test scores, and graduation rates (see 17 graphs). Since education is a predictor of health, there are and will be long-term costs to Kansans, especially for minority groups.

Metzl attacks the “Castle Doctrine” (“a man’s home is…”) as a symbol of narcissism, individualism, and as a risk for all citizens when social structures are abandoned. He closes with some hopeful examples of social change for the better.

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Elderhood: Redefining Aging, Transforming Medicine, Reimagining Life.

Aronson, Louise

Last Updated: Oct-07-2019

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction — Secondary Category: Literature /

Genre: Treatise

Summary:

Louise Aronson, a geriatrician, argues that we should create Elderhood as the third era of human aging, joining the earlier Childhood and Adulthood. This new concept will allow us to re-evaluate the richness of this later time, its challenges as body systems decline, and, of course, the choices of managing death. This important and valuable book is a polemic against modern medicine’s limits, its reductive focus, and structural violence against both patients and physicians. She argues for a wider vision of care that emphasizes well-being and health maintenance for not only elders but for every stage of life.

Aronson argues that contemporary society favors youth and values of action, speed, and ambition, while it ignores—even dislikes—aging, older people, and the elderly. She says ageism is more powerful than sexism or racism—as bad as those are. Medical schools ignore the elderly, focusing on younger patients, especially men, and medical students perceive geriatrics as boring, sad, and poorly paid. Primary care, in general, seems routine and dull. By contrast, medical treatments, especially high-tech, are exciting and lucrative. In medical schools a “hidden curriculum” focuses on pathophysiology, organ systems, and drugs, ignoring patients’ variability as well as their suffering and pathos. Further, business and industrial models make “healthcare” a commodity, and nowadays “doctors treat computers, not people” (p. 237). Aging has become “medicalized” as a disease. Medicine fights death as an enemy, often with futile treatment that may extend a dying process.

Instead, Aronson says we need to bring back the human element, putting care of people at the center, not science. She calls for a new paradigm with ten assumptions (p. 378). Number 2 reads: “Health matters more to both individuals and society than medicine.” Number 9 claims, “As an institution, medicine should prioritize the interests of the people over its own.”

Many practical changes would follow, from redesigned “child-proof” drug containers to buildings and public spaces that are more congenial to older people—and, in fact, to everyone else. We should change our attitudes about old age. For example, we might use the adjective “silver” for a medical facility that is friendly to and usable by older people. Changing our attitudes about aging can help all of us imagine more positive futures for each one of us and for all of our society.

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Ladysitting: My Year with Nana at the End of Her Century

Cary, Lorene

Last Updated: Sep-03-2019

Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In Ladysitting, novelist and memoirist Lorene Carey writes candidly and reflectively about the year and a half she cared for her century-old, ferociously independent paternal grandmother. The experience became a critical moment for personal and familial discovery. Carey’s intensive caregiving began when Nana Jackson could not be discharged from the hospital to the house where, for decades, she had lived by herself. Growing up, Carey enjoyed enchanted weekends of indulgence in Nana’s sunlit suburban home in South Jersey, a respite from her family’s life in urban West Philadelphia. Partly in gratitude for those weekends, partly from a sense of duty, Carey made physical, emotional, and spiritual space for Nana in the home she shared with her husband, a minister, and their teenage daughter. Along with Carey’s own artistic, community, and professional commitments, she also maintained the property management business that her grandmother ran until her confinement. Carey’s decision to become Nana’s primary caregiver brought momentary satisfactions along with overwhelming frustrations.

Carey’s narrative agilely transitions between present encounters with Nana Jackson and the past: her own past and her African- and Caribbean-American relations’. By doing so, Carey tries to make sense of the complicated woman in her care, herself, and relationships within her family. She discovered generations of mostly “free-people-of-color,” several financially and politically successful, whose ambitions confronted Reconstruction, the Jim Crow South, the migration north, and the “lynchings [that] made sure that every gain would be paid for in blood and money, if not by [her family], then by other black people, somewhere.” How might that history, Carey asks, help her understand her family’s generations of divorces (including her own), alcoholism, deceptions, estrangements, and the elusive efforts of one generation to build on the accomplishments of the others?

It took Carey ten years to research and reflect on that question. And then to write, hoping “to clear away the rage, uncover the simple grief, stored in the muscles that seized up then and cannot remember how they were before, and to convince us both, Nana and myself, that she has left this plane. And to forgive.”

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Strange Relation—A memoir of marriage, dementia, and poetry

Hadas, Rachel

Last Updated: Aug-18-2019

Ratzan, Richard M.

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Strange Relation is a memoir of the terminal illness of George Edwards, a composer and professor of music at Columbia University, written by Rachel Hadas, his wife, a well- known poet and herself a professor of English at Rutgers University. Hadas begins with the insidious onset of Edwards's dementia, which is eventually diagnosed as frontotemporal dementia, a slow neurodegenerative disease characterized by a progressive paucity - and then absence - of communication, especially speech. She then continues with their meetings with physicians, especially neurologists, social workers, support groups and eventually nursing home personnel, recording, often in the form of her poems, her thoughts and reactions at the time.

The book consists of short chapters, more or less chronological, with occasional flashbacks to earlier periods in her life or their marriage. In addition to her poems, there are ubiquitous references to literature, many of them familiar, as well as not so familiar illness narratives by patients and relatives, especially those involving dementia and bereavement. George died in 2011, the year of the publication of this book, after 33 years of marriage to Ms. Hadas.

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