Summary:

Several threads tie together this ambitious, beautifully digressive reflection on eros and logos in the experience of illness and the conduct of medicine and health care, which takes into account what a complex striation of cultural legacies, social and political pressures, and beliefs go into both.  Framing his reflections on the role of unknowing, altered states, inexplicable events, desire, hope, love, and mystery in illness and healing is a fragmented, poignant narrative of Morris’s own experience of watching his wife succumb to the ravages of early Alzheimer’s. 

Her disease is one that leads both professional and intimate caregivers to the same question:  what do you do when there’s nothing left for scientific medicine to do?  Conversations about palliative care are broadening, he points out, and medical education is making more room for the kind of reflection the arts invite and for spirituality as a dimension of illness experience and caregiving.  Guidance in such explorations can be found in ancient literature, especially in the archetypes provided by the Greek and Roman myths.  Morris makes astute and helpful use of his own considerable training in literary studies to provide examples of how eros and logos—complementary contraries—have been conceived and embodied in a somewhat polarized culture and how incomplete health care is when it doesn’t foster the capacity to dwell in and with unknowing, possibility, indeterminacy, and mystery.  Knowing the limits of scientific medicine may, paradoxically, make it better.  Certainly it can help keep our engagements with illness—always relational, always disruptive, most often to some degree bewildering—humane.

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This Way Madness Lies was published in partnership with London’s Wellcome Collection for the exhibition “Bedlam: The Asylum and Beyond,” which ran from September 2016 - January 2017 and was curated by Mike Jay and Bárbara Rodriguez Muñoz. It is a book that was meant to accompany the exhibition, yet which, by virtue of the substantial text and reproductions, can stand alone.  

The book traces the history of treatment of the mentally ill by following the colorful story of Bethlem Royal Hospital from its antecedents in the Middle Ages up to the present.  Its sway over the public imagination evidenced by its appearance in everything from Jacobean Drama to “Sweeney Todd,” Bedlam has truly attained archetypal status.  An archetype, yet also a real functioning hospital.  Sections of the book entitled “Madhouse,” Lunatic Asylum,” and “Mental Hospital” chronicle the facilities designed respectively during the 17th/18th, 19th, and 20th centuries, and explain how they reflect changing notions of madness in each era.   

The first structure was visually grand but lacked a foundation, a metaphor for what was going on inside: “a façade of care concealing a black hole of neglect” (p. 39).  It became a tourist attraction along the lines of the zoo, with nothing preventing the public from gawking at and taunting the inmates.  While its replacement gave the impression of being more functional, conditions proved equally squalid.  On the other hand, 19th-century Europe and the United States saw asylum reforms, as well as the medicalization of madness as an “illness” and the ascent of psychiatry as a branch of medicine.  Finally, in 1930, the buildings still in use in Monks Orchard, a suburb of London, were constructed.

By contrast, we learn about treatments elsewhere, most notably Geel, Belgium.  There, for centuries, as an alternative to being warehoused in psychiatric hospitals, the mentally ill have been successfully boarding with townspeople.   

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The idea for her second novel came to Sarah Perry in a flash (Ref. 1) as her husband was telling her about the 1699 sighting of a serpent or dragon in Henham, a village slightly to the northwest of the town of Essex, where Ms.Perry was born in 1979. The late 19th century events of the novel occur primarily in Aldwinter, a fictional fishing village on the Blackwater estuary.  Divided into 4 books (with titles derived from a 1669 pamphlet on the Serpent), each with subdivisions by month, further subdivided into chapters, the story takes place over 11 calendar months, from New Year's Eve to November, 1892. Although the story does not feel complicated and should not be difficult to describe in a synopsis, it is a tribute to the novelist's Dickensian talents  that in fact it is somewhat complex, involving four couples and their various children and friends and their increasingly intricate relationships, all revolving around the palpable feeling in Aldwinter that the famous Essex Serpent has returned, resurfaced, or decided to re-animate all the lives therein. The protagonist is Cora Seaborne,  a recently widowed free-thinker, adept in biology and natural sciences, and mother of an adolescent boy, Francis, who would nowadays probably receive the label "autistic." After the death of her abusive husband from oropharyngeal cancer, Cora becomes emotionally involved with Luke Garrett, the treating surgeon, an idiosyncratic, brilliant man, who has a bosom buddy, George Spencer (simply called "Spencer"), a very wealthy former medical school classmate. With an introduction from her friends Charles and Katherine Ambrose, Cora and Martha - her intimate companion - visit William (often referred to as just "Will") and his wife Stella Ransome in Aldwinter, where Will is the parish minister and father to three children. The eldest is Joanna, a precocious adolescent girl one imagines, alongside a younger Cora, as a younger version of this novel's author, who describes herself as vibrantly curious of all her surroundings while growing up in Essex as a young girl. (Ref. 2)

With the arrival of Cora and Martha in Aldwinter, the narrative begins in earnest with the development of the mounting anxiety over the mysterious events (a missing boat, unexplained drownings) attributed to possibly a resurgent Essex Serpent besetting Aldwinter; Luke's miraculous operation saving a man named Edward Burton from a knife wound to the heart; the increasingly romantic relationship between Cora and Will, to Luke's dismay; Stella's rapidly progressive pulmonary tuberculosis; the disappearance of Naomi Banks, a friend of Joanna; and an attack on Luke by the same man who had knifed Edward Burton. By novel's end, without spoiling the plot, most loose ends have been cauterized, left more neatly dangling or deftly retied.  

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On a stormy night in 1968 a retired, widowed schoolteacher in rural Pennsylvania opens her door to find a young couple, she white, he African American, wrapped in blankets, drenched, and silent.  Letting them in changes her life.  They have escaped together from a nearby mental institution most locals simply call "The School."  The young woman has recently given birth.  When Martha lets them in, her life changes forever.   Supervisors from "the School" show up at the door, the young man escapes, and the young woman, memorably beautiful, is taken back into custody.  The only words she is able to speak out of what we learn has been a years-long silence are "Hide her."  Thus she leaves her newborn baby to be raised by a stranger.  The remaining chapters span more than forty years in the stories of these people, linked by fate and love and the brutalities of an unreformed system that incarcerated, neglected, and not infrequently abused people who were often misdiagnosed.  Homan, the young man who loved Lynnie, the beautiful girl from the institution, was deaf, not retarded.  Lynnie was simply "slow," but a gifted artist who recorded many of the events of her life in drawings she shared only with the one attendant who valued and loved her.  Though her pregnancy resulted from being raped by a staff member, the deaf man longs to protect her and care for the baby.  Years separate them; Homan eventually learns signing; Lynnie's sister befriends her and an exposé results in the closure of the institution.  Over those years Lynnie and Homan witness much cultural change in treatment of people like them who were once systematically excluded.  They find social identities that once would have been entirely unavailable to them.  And eventually, after literal and figurative journeys of discovery, they rediscover each other.   

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The title of this book, “An American Sickness,” refers to the author’s view that the costs people who require health care must bear in the U.S. causes its own sickness. The author, Elisabeth Rosenthal, is a physician-turned-journalist so her use of a medical metaphor to explain the harms health care costs are causing people comes naturally to her. The sickness metaphor forms the structure for the entire book, and in particular the way a physician approaches a patient with a health problem to diagnose and treat. Thus, the introduction to the book is the “chief complaint,” Part I is the “history of present illness and review of systems,” and Part II is “diagnosis and treatment.”  

The chief complaint is: “hugely expensive medical care that doesn’t reliably deliver quality results.” (p. 4) This complaint is also relatively acute given that the financial toxicity health care causes has become so extreme over just the 25-year period starting in the early 1990s. This was the time it took in Rosenthal’s view for American medicine to transform from a “caring endeavor to the most profitable industry in the United States.” (p. 4)  

The source of this complaint cannot be located in one segment of society or in one part of health care in the U.S. It’s diffuse. Therefore, Rosenthal exams several components of American health care to isolate specific causes for the financial toxicity people are experiencing—her review of systems. She exams 11 particular components, with each one comprising a separate chapter as follows: insurance; hospitals; physicians; pharmaceuticals; medical devices; testing and ancillary services; contractors; research; conglomerates; health care as businesses; and the Affordable Care Act.  

Part II on diagnosis and treatment takes the form of a how-to book, as the book’s subtitle announces. Rosenthal is speaking to health care consumers—i.e., all of us—and commanding our attention: “The American healthcare system is rigged against you. It’s a crapshoot and from day to day, no one knows if it will work well to address a particular ailment.” (p. 241) After a chapter on the consequences of being complacent with our personal health care utilization and costs, Rosenthal provides advice in subsequent chapters on these topics: doctor’s bills; hospital bills; insurance costs; drug and medical device costs; bills for tests and ancillary services; and managing all this in a digital age.  

The book is replete with case studies. The writing is geared toward health care consumers who have no expertise in any aspect of health care—it is Rosenthal the health care journalist writing, not Rosenthal the physician and health policy expert. 

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In this book, Ivan Illich offers a harsh critique of health care as provided in western industrialized societies during the 1970s. However, he did not write this book as a health care expert. He was trained as a medieval historian and philosopher, and taught the history of friendship and the history of the art of suffering. Indeed, he admitted:  “I do not care about health.” (p. i) And yet, he could have written the same critique 40 years later.  

What brought Illich’s attention to health care was his broader interest in how modern responses to societal level challenges become counterproductive and even harmful:

The threat which current medicine represents to the health of populations is analogous to the threat which the volume and intensity of traffic represent to mobility, the threat which education and the media represent to learning, and the threat which urbanization represents to competence in homemaking. (p. 7)

Illich’s general thesis is that health care can work against the healing people seek from it, that health care can be as pathogenic as disease, and that health care can expropriate health. Health care is a nemesis to its subjects, he asserted, because it is “a social organization that set out to improve and equalize the opportunity for each man to cope in autonomy and ended by destroying it.” (p. 275)  

Illich builds his argument around the concept of iatrogenesis, which he differentiates into three categories: 1) clinical iatrogenesis, 2) social iatrogenesis, and 3) cultural iatrogenesis, each of which is given a separate section in the book.

Clinical iatrogenesis is the harm done to people as the result of actions taken to restore health or prevent illness, such as an adverse drug event, a hospital-acquired infection, or perforated bowel from a screening colonoscopy. Illich characterizes clinical iatrogenesis as it is understood and used in biomedical circles, but he brings a particular poignancy to it when he refers to “remedies, physicians, or hospitals [as] the pathogens, or ‘sickening’ agents” at work. (p. 27)  

With social iatrogenesis, Illich is referring to the harm societal arrangements for health care can inflict on people it’s meant to help. These arrangements comprise hospitals, physicians, health care product industries, insurers, and government agencies. The net effect of their actions is to standardize health care, and in Illich’s view, standardizing health care amounts to the “medicalization of life.” The more life is medicalized, the more people are forced to operate under the influence of organized health care, “when all suffering is ‘hospitalized’ and homes become inhospitable to birth, sickness, and death; when the language in which people could experience their bodies is turned into bureaucratic gobbledegook; or when suffering, mourning, and healing outside the patient role are labeled a form of deviance.”
(p. 41)  Harm results to people whose ideas of what constitutes illness and whose preferences in the management of their illnesses do not match up with standardized health care. They could be harmed by treatments they don’t think they need, such as drugs to blunt grief, or in the ways they do not prefer, such as in a hospital. Thus, in social iatrogenesis, the social arrangements of health care are the pathogens.  

Before the social movements and transformations produced standardized health care, people of various cultures coped and adjusted in their own ways to the suffering they experienced. Illich’s cultural iatrogenesis occurs when societies capitulate to “professionally organized medicine [that] has come to function as a domineering moral enterprise that advertise industrial expansion as a war against all suffering.” (p. 127)  Illich is not saying that suffering is good and should be preserved, but rather that societies coming under the control of industrialized health care suffer more and suffer in ways they no longer have the authority or will to manage. Cultural iatrogenesis also manifests when professionally organized medicine supplants community responses to health problems people in that community experience: “The siren of one ambulance can destroy Samaritan attitudes in a whole Chilean town.” (p. 8) He elaborates on how cultural iatrogenesis works against people with examples involving treatment of pain, creating and eliminating diseases, and death and dying. 

Illich’s thoughts on countering the counter productivity of industrial health care take up the last section of the book. He does not propose tearing down organized health care, but rather getting it to where “health is identical with the degree of lived freedom,” because “beyond a certain level of intensity, health care, however equitably distributed, will smother health-as-freedom.” (p. 242)  Illich is beseeching organized health care to leave life less medicalized so as to leave more room for people to decide themselves if their challenges are a matter of health or not, and how they would prefer to manage them when health care may have a role. To this end, he concentrated this section of the book mostly on the political responses required to restore “freedom and rights” people ought to have to manage their health.  

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“Few hospitals are more deeply embedded in our popular culture” than Bellevue, David Oshinsky writes in the introduction to his new book Bellevue: Three Centuries of Medicine and Mayhem at America's Most Storied Hospital.  What follows, however, is not just an account of the (in)famous hospital, but a history of New York City, of disease and medicine and of America itself. Thus, the pages of Bellevue take us from Revolutionary War to Civil War, from Miasma Theory to Germ Theory, from the Spanish flu epidemic to the AIDS epidemic and from the disaster of 9/11 to the devastation of Hurricane Sandy. Along the way, the reader is introduced to giants of the medical and political world, many of whom were connected intimately to the hospital.  In Oshinsky’s telling, Bellevue is a hospital of firsts. The hospital with the first ambulance corps, first in-hospital medical school, first pathology lab. It is—at the same time—a hospital rooted in tradition. It is startling in reading Bellevue, for example, to realize that halfway through the book, the doctors who are being celebrated as central to the hospital’s longevity still subscribed to Miasma theory and could do little more for their patients than bleed them and give them alcohol.  Bellevue is also—and in Oshinsky’s eyes this seems most important—a hospital of immigrants. It was and is, a hospital where those for whom no one else would care could come, where no one would be turned away. Over the years, this has meant that Bellevue has opened its doors to Irish immigrants who were thought to be causing the Typhus epidemic, to Jews who were thought to be causing tuberculosis outbreaks and to homosexuals who were thought to be causing the AIDS epidemic. The demographic of patients who come to Bellevue has changed drastically throughout its history, but the underlying ethos of the hospital has been unwavering. 

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A rare patient narrative from 1812 describes a mastectomy performed before the introduction of anesthesia. This letter from Frances d'Arblay (1752-1840) (née Frances [Fanny] Burney), addressed to her older sister, Esther, details her operation in Paris by one of Napoleon's surgeons.In her childhood and youth, Fanny Burney moved in the best London society; she was a friend of Dr. Johnson who admired her. She served five years at the court of George III and Queen Charlotte as Second Keeper of the Royal Robes (1786-1791). Fanny Burney married Adjutant-General in the army of Louis XVI Alexandre-Jean-Baptiste Piochard d'Arblay in 1793. He had fled to England after the Revolution. They lived in England and spent ten years in France (1802-1812).Burney's mastectomy took place 30 September 1811. The patient wrote about her experience nine months later. She chronicles the origin of her tumor and her pain. She is constantly watched by "The most sympathising of Partners" (128), her husband, who arranges for her to see a doctor. She warns her sister and nieces not to wait as long as she did. At first resisting out of fear, the patient agrees to see Baron Dominique-Jean Larrey (1766-1842), First Surgeon to the Imperial Guard.He asks for her written consent to guide her treatment; her four doctors request her formal consent to the operation, and she makes arrangements to keep her son, Alex, and her husband, M. d'Arblay, away. Her husband arranges for linen and bandages, she makes her will, and writes farewell letters to her son and spouse. A doctor gives her a wine cordial, the only anesthetic she receives. Waiting for all the doctors to arrive causes her agony, but at three o'clock, "my room, without previous message, was entered by 7 Men in black" (136).She sees "the glitter of polished Steel" (138). The extreme pain of the surgery makes her scream; she feels the knife scraping her breastbone. The doctors lift her up to put her to bed "& I then saw my good Dr. Larry, pale nearly as myself, his face streaked with blood, & its expression depicting grief, apprehension, & almost horrour" (140).Her husband adds a few lines. These are followed by a medical report in French by Baron Larrey's 'Chief Pupil'. He states that the operation to remove the right breast at 3:45pm and that the patient showed "un Grand courage" (141). She lives another twenty-nine years. It is impossible to determine whether her tumor was malignant.

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Suzanne O’Sullivan is a neurologist in the British National Health Service. She has a particular interest in psychosomatic illnesses, and in this book, she covers what she has learned about them. O’Sullivan provides these learnings mostly from clinical experience rather than as findings from empiric studies on psychosomatic illnesses.   

Each chapter is built around one or more case studies that focus on particular psychosomatic illnesses, and include historical perspectives and various theories that might explain why they occur.  

The cases O’Sullivan uses presented themselves as seizures, paralysis, urinary tract troubles, generalized and localized pain, gastrointestinal problems, fatigue, blindness, and dystonia. Patients sometimes came to her with pre-determined diagnoses such as epilepsy, Lyme disease, chronic fatigue syndrome, myalgic encephalomyelitis, and fibromyalgia among others. O’Sullivan is emphatic that psychosomatic illnesses are not just any presentation of illness that cannot be linked to a pathological basis. Psychosomatic illnesses arise from “the subconscious mind [that] reproduces symptoms that make sense to the individual’s understanding of how a disease behaves.” (p. 83) Illness presentations that are feigned or self-inflicted (e.g., Munchausen’s syndrome) are not psychosomatic illnesses in O’Sullivan’s view.  

Each chapter delves into some particular aspect of psychosomatic illness relevant to the case study. These include history (e.g., role of the uterus in hysteria), mechanisms at work (e.g., conversion reactions, dissociation), triggers (e.g., stress, loss, personality traits), factors (e.g., previous illness experiences), illness behavior disorders (e.g., associating illness to benign physical sensations), and the higher incidence seen among females. Though O’Sullivan teases out various characteristics and workings of psychosomatic illnesses, she admits that they remain vexing to clinicians because, “almost any function of the body can be affected in almost any way.” (p. 170)

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The Alice Neel painting, T.B. Harlem, can be seen at the National Museum of Women in Arts in Washington, D.C.

We are looking at a young man who has tuberculosis (TB) and who is at home recovering from a surgical procedure designed to collapse a part of his lung that is infected. He looks sick. His presentation conveys how TB can be called “consumption.” From this picture, however, we can tell that it is not just the subject’s body that is being consumed, but also his spirit and any reservoir of hope.  

The painting appeared on the cover of the June 8, 2005 issue of the Journal of the American Medical Association (JAMA).  In his accompanying essay, William Barclay, a pulmonary specialist, surmises that “thoracoplasty” was the surgical procedure used for this person. The procedure involves the removal of several ribs so that the soft tissue the ribs held up collapses upon the lung and closes it off. Barclay calls thoracoplasty “the most radical form of collapse treatment” at the time. He also notes how Neel captured the anatomical consequences of the procedure: His body forms a graceful sigmoid curve, for a thoracoplasty always resulted in a thoracic scoliosis from the pull of the muscles on the side not operated on, with a compensatory cervical scoliosis in the opposite direction.  

A white wound dressing on the left side of the subject’s chest draws our attention because of its brightness and because the subject’s right hand is pointing to it. It’s not covering the surgical incision because that’s on his back. Barclay suggests that the dressing is covering a wound that opened up a track from the skin to the chest lining or to the lung (i.e., a fistula). The dressing takes the shape of a cross, which made the writer of the text accompanying the painting at the museum where it hangs wonder if we are to see the subject as a martyr in the form of Christ.

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