Pain Studies

Olstein, Lisa

Last Updated: Jun-10-2020

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

“All pain is simple” reads the opening sentence of this unusual and striking book. The next sentence reads, “And all pain is complex.” These two sentences foreshadow many puzzles to come: how do we live between chaos and control? Why can’t doctors figure migraines out? Why don’t they agree on a treatment for a particular patient? Olstein is a poet and long-term migraine sufferer. Her book offers many observations about pain, and her attempts to define it, describe it, and plumb its nature through language. There is no linear narrative or argument, rather 38 very brief chapters—usually three to five pages—and many of these could be read in a different order.

Olstein uses the terms “studies” and “research” for her efforts to capture pain, to explain it, and to understand the cause(s) of her disease. Her mother had migraines; women have three times the rate of men; she had a childhood head injury. Do any of these factors explain her disease? No. And what treatments work? She lists some 50 drugs/supplements/activities she has tried to deal with her illness. None of these have worked in a definitive way. Further, she lists some 30 side-effects she has experienced from these various treatments (pp. 74-75). She has had multiple migraines, one lasting three months, but she also says drugs keep pain at bay: “mostly the medication does work” (p 90).

Some disparate figures help her focus her inquiry: Joan of Arc (possibly a migraine sufferer), the TV character Dr. Gregory House (racked with chronic pain, he is an opioid addict), Virginia Woolf, and Hildegard of Bingen (possibly a migraine sufferer). Also ancient writers such as Lucretius, Pliny the Elder, and Antiphon the Sophist, and contemporaries from different fields, such as mathematics and neurology. Also she refers to poems by Emily Dickinson, Elizabeth Bishop, and C. D. Wright, as well as to an article on gendered literature by Siri Hustvedt.

Largely written during a writing residency, these are incisive notes plus associations as she plumbs not only her illness but also her responses—as poet, as thinker, as searcher for healing—to the bizarre, long, difficult path of her migraines. (We have only brief mentions of her personal and family life.) While she refers to some scientific literature, it is more often that her insights come from artistic fields such a literature, sculpture, drama, and popular music. She writes that her work with a therapist over a dozen years has been helpful to her.

There is no conclusion…nor can there be. Her illness, treatment, and writing are all works in progress. Patients are different; doctors are different; science evolves. In their many forms and presentations, migraines are mysterious and complex, as this book creatively and powerfully shows. Olstein writes, “The beauty, the love, is in what we perceive” (p. 144). We may take this observation as the guiding principle for the book.

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Death is But a Dream: Finding Hope and Meaning at Life's End

Mardorossian, Carine; Kerr, Christopher

Last Updated: Mar-17-2020

Galbo, MA, MILS, Sebastian

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

Genre: Criticism

Summary:

In Death is But a Dream, Christopher Kerr, MD, PhD, the Chief Executive Officer and Chief Medical Officer of Hospice & Palliative Care Buffalo, shares his patients’ end-of-life dreams and visions. The content and intensity of these dreams vary, but often center on patients’ transient meetings with predeceased loved ones, offering a deeply spiritual sense of peace during periods of physical suffering.

Using patient interviews, Kerr’s book does not fetishize dream events as ghostly commotions or in terms of pseudo-mysticism, or insist on using a religious framework for their interpretation, explaining rather that bearing witness to and legitimizing end-of-life dream experiences constitute a new ethical imperative in the practice of palliative care: “A true holistic approach to patient care must also honor and facilitate patients’ subjective experiences and allow them to transform the dying process from a story of mere physical decline to one of spiritual ascension” (Kerr 28). Case after case, his research documents that because end-of-life dreams provide patients with a singular emotional and psychological comfort that no palliative medication can simulate, hospice professionals need to validate patient dreams by listening carefully and compassionately.

With this in mind, end-of-life dreams serve as a kind of counter-narrative to dominant cultural understandings and representations of human experiences in hospice, specifically stereotypes of terminally ill individuals as being incapable of meaningful communication, creativity, and understanding. Kerr’s patients’ narratives reveal that end-of-life dreams and visions are not trauma-inducing experiences or instances of religious prophecy, but “help reframe dying in a way that is not about last words and lost love but about strengthened selves and unbreakable bonds across lives” (142).

Death is But a Dream upends medical research, or certain “limitations of science,” that oversimplifies end-of-life dreams by attributing them to neurological deterioration, oxygen deprivation, and the side effects of pain management medication (11). The general lack of rigorous, serious-minded research in end-of-life dream experiences is inseparable, in part, from institutionalized medicine’s “inability to see dying as anything but a failure” which has produced a healthcare system that “reflects a limited view of the totality of the dying experience” (7). The patient accounts that Kerr documents, however, reveal an undeniable dimension of human experience at life’s end whose complexities may be well beyond the reaches of full scientific understanding. End-of-life dreams seem to be part of an elaborate system of compensation (to borrow a term used by Siddhartha Mukherjee), as the mind works overtime to activate and animate certain memories to diminish the physical realities of dying. “There is an adaptation—substantive, spiritual yet cognitively meaningful,” writes Kerr, “a mechanism through which the patient can emerge from the dying process with a positive psychological change” (69). Indeed, the mystery of end-of-life dreams—their visions of loved ones; of seeking forgiveness, healing, and understanding within weeks, sometimes days, of one’s death; of comforting apparitions and visitations—points to a miraculous capacity within the human heart that eases the life-to-death transition.

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Man's 4th Best Hospital

Shem, Samuel

Last Updated: Feb-28-2020

Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Most of the group are reunited in this sequel to the 1978 blockbuster, The House of God: narrator Dr. Roy Basch and his girlfriend (now wife) Berry, former fellow interns (Eat My Dust Eddie, Hyper Hooper, the Runt, Chuck), surgeon Gath, the two articulate police officers (Gilheeny and Quick), and the Fat Man (a brilliant, larger-than-life former teaching resident). As interns, Basch and his comrades were a crazy, exhausted, cynical crew just trying to survive their brutal internship. Years later, the midlife doctors have changed but remain emotionally scarred.

The Fat Man (“Fats”), now a wealthy California internist who is beginning a biotech company targeting memory restoration, is recruited to reestablish the fortunes – financial and prestige – of Man’s Best Hospital which has slipped to 4th place in the annual hospital rankings. He calls on his former protégés to assist him in an honorable mission, “To put the human back in health care” (p34). Fats enlists other physicians (Drs. Naidoo and Humbo) along with a promising medical student (Mo Ahern) to staff his new Future of Medicine Clinic (FMC), an oasis of empathic medical care that strives to be with the patient.

Every great story needs a villain. Here the main bad guys are hospital president Jared Krashinsky, evil senior resident Jack Rowk Junior, and CEO of the BUDDIES hospital conglomerate Pat Flambeau. The electronic medical records system dubbed HEAL is a major antagonist, and the FMC docs wage war against it and the “screens.”

Poor Roy Basch works long hours, deals with family problems, has trouble paying bills, and experiences health issues (a bout of atrial fibrillation, a grand mal seizure, and alcohol use). Fats has warned of a “tipping point when medical care could go one way or another, either toward humane care or toward money and screens” (p8). Alas, the computers and cash appear victorious. A major character is killed. Many of the doctors working in the FMC including Basch leave the clinic. And fittingly, Man’s Best Hospital plummets in the latest rankings from 4th to 19th place.

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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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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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Salt in My Soul: An Unfinished Life

Smith, Mallory

Last Updated: Aug-16-2019

Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Mallory Smith died of complications following a double-lung transplant for cystic fibrosis (CF). She was twenty-five years old and kept an extensive journal on her computer for 10 years. Salt in My Soul: An Unfinished Life is her memoir, edited by her mother, Diane Shader Smith, from the 2,500 pages of notes, observations and reflections which Mallory Smith wrote. The title refers to the intimate relationship of salt imbalance in cystic fibrosis, and the fact that Mallory felt her most well while swimming in the sea. Diagnosed at age three, she spent much of her days and nights treating the disease with medication, nutrition, chest percussive treatments, breathing treatments, adequate sleep, and aggressive treatment of infections. Unfortunately, while still a child her lungs were colonized with B. cepacia, a resistant bacteria ‘superbug’ which makes transplantation highly risky and hence leads to most centers to not accept CF patients onto their wait lists. Ultimately, University of Pittsburgh does accept Mallory as a transplant candidate, although her health insurance puts up every road block possible to her receiving care.

Mallory Smith was extraordinarily accomplished – she graduated from Stanford University Phi Beta Kappa, and became an editor and freelance writer. She was also deeply engaged with life and others; she was grateful for her loving, devoted family, and she developed close, fierce friendships within the CF community, among classmates, and eventually, she fell in love.

She resists being called ‘an inspiration.’ She writes: “I’m not an inspiration. I’m just a person, grounded in compassion, striving to achieve empathy and wanting to make my way with goodness and grace.” (p. 171) She marvels at the miracle of life: “Our existence is the result of stars exploding, solar systems forming. Our Earth having an environment hospitable to life, and then, finally, millions of highly improvable events accumulating over millions of years to bring us, a capable and conscious bag of stardust, to the here and now.” (p 111) Her memoir is a story of living and dying from CF, but it is also an inside look at the brief life of young gifted writer.

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That Good Night: Life and Medicine in the Eleventh Hour

Puri, Sunita

Last Updated: Aug-13-2019

Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Sunita Puri, a palliative care attending physician, educates and illuminates the reader about how conversations about end of life goals can improve quality of life, not just quality of dying, in her memoir, That Good Night: Life and Medicine in the Eleventh Hour. Thirteen chapters are grouped in three parts: Between Two Dark Skies, The Unlearning and Infinity in a Seashell. The arc of the book follows Puri as she is raised by her anesthesiologist mother and engineer father – both immigrants from India – Puri’s decision to enter medical school, her choice of internal medicine residency followed by a palliative care fellowship in northern California and her return to practice in southern California where her parents and brother live. Besides learning about the process of becoming a palliative care physician, the reader also learns of Puri’s family’s deep ties to spirituality and faith, the importance of family and extended family, and her family’s cultural practices.

Puri writes extensively about patients and their families, as well as her mentors and colleagues. She plans and rehearses the difficult conversations she will have with patients in the same way a proceduralist plans and prepares for an intervention. She provides extensive quotes from conversations and analyzes where conversations go awry and how she decides whether to proceed down a planned path or improvise based on the language and body language of her patients and their family members. We visit patients in clinic, in hospital, and at home, and at all stages of Puri’s training and initial practice. Some of the most charged conversations are with colleagues, who, for example, ask for a palliative care consultation but want to limit that conversation to a single focus, such as pain management. We also learn of the differences between palliative care and hospice, and the particularly fraught associations many have with the latter term. She feels insulted when patients or families vent by calling her names such as “Grim Reaper” or “human killer” (p. 232), but understands that such words mean that more education is needed to help people understand what a palliative care physician can do.

As a mediator of extremely difficult conversations, where emotions such as shame, guilt, fear, helplessness and anger can swirl with love and gratitude, Puri finds the grace to acknowledge that all such emotions are part of the feelings of loss and impending grief, and to beautifully render her reflections on these intimacies: “Yet although I am seeing a patient because I have agreed that they are approaching death, if I do my job well, what I actually encounter is the full force of their lives.” (p. 206) Having met many dying people she notes: “Dying hasn’t bestowed upon them the meaning of life or turned them into embodiments of enlightenment; dying is simply a continuation of living this messy, temporary life, humanly and imperfectly.” (pp 221-2)

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The Unspeakable Mind: Stories of Trauma and Healing from the Frontlines of PTSD Science

Jain, Shaili

Last Updated: Jun-19-2019

Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

A psychiatrist and PTSD (post-traumatic stress disorder) specialist, Dr. Shaili Jain has written a book on PTSD and its many angles, from diagnosis to treatment to a larger perspective on cultural and historic influences on the development of traumatic stress. She weaves the story of her own family’s experience with the Partition of India and Pakistan in 1947, particularly its effect on her father and grandparents, as a way to consider the effect of trauma on family, but also how those traumas become ‘unspeakable.’

A brief but effective introduction outlines the seven parts of the book:
1. Discovering Traumatic Stress: historical perspective and the changing language to describe the effects of trauma.
2. The Brain: the physiologic and psychological underpinnings of PTSD, including effects on memory formation and retrieval.
3. The Body: such as addiction, cardiac effects and concerns at different stages of life.
4. Quality of Life: domestic and sexual violence, socioeconomic factors.
5. Treating Traumatic Stress: programs, treatment strategies and psychopharmacology.
6. Our World on Trauma: global health, large scale tragedy, terror and war.
7. A New Era: An Ounce of Prevention: resilience, accessibility of care including early and preventative care.

Additionally, almost 100 pages of notes, glossary, resources and an index provide an easy way to further explore, to use the book to look up specific topics, and underscore the heavily researched nature of the text. The book is eminently readable, with numerous, well-placed stories of patient encounters and particular experiences and manifestations of PTSD. These stories are illustrative of the concepts Jain ably explains. However, they also provide an insider’s view of what happens in the consulting room. In the prologue, Jain describes a young Afghanistan War veteran, who has been hospitalized after a violent outbreak at a birthday party: “Josh’s PTSD was fresh, florid, and untreated…. His earlier poise caves in to reality, and his face falls to anguish.” (p. xvi) We are in the room, listening to the patient, witnessing the tears of the medical student, glimpsing the attending psychiatrist’s response, and relating to Jain, as a psychiatry chief resident, as she understands that the individual before her, even as he shows classic signs of traumatic stress, remains an individual, a person in need of care.

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Go Set A Watchman

Lee, Harper

Last Updated: Apr-25-2019

Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Now 26 years old, Scout (Jeanne Louise) returns home to Maycomb, Alabama, where she encounters many changes. Her brother has died. Her heroic father, Atticus Finch, who defended the wrongly accused man in the earlier acclaimed novel (To Kill a Mockingbird) is still carrying on his legal practice and his role as a wise pillar of the community, despite his advancing age. He is approached to defend a black man who has killed a white man in a motor vehicle accident.

Scout renews contact with old friends, including Hank who still hopes that she will marry him. The old places spark memories told in deftly written flashbacks that beautifully evoke the atmosphere of a small southern town in the heat of summer. Some flashbacks– an imagined pregnancy following a chaste kiss and an escapade with falsies at a school dance-- are hilarious renditions of ‘tweenage’ angst, typical of any time or place.

But Scout is disgusted by the social spying, the rumors that easily build, and the latent racial hatred that lurks everywhere. The memories of her “color-blind” childhood make her confrontation with the cruel, racial tensions in the more recent time all the more upsetting. Even her beloved nanny, Calpurnia, is now alienated with distrust and repressed anger. The climax comes when she witnesses her father, as chair of a meeting, give the floor to a notorious racist. Scout confronts him and he launches into a long self-justifying and not entirely convincing defense of the need for free speech. The disquieting conclusion is ambiguous.

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