Showing 91 - 100 of 912 annotations tagged with the keyword "Patient Experience"

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

In-Between Days: A Memoir about Living with Cancer is an accurate and suggestive title. At 37, Teva Harrison was diagnosed with Stage IV breast cancer with metastases to her bones. She lives between hopes for new treatments allowing a useful life but also fears about debility—some already caused by her treatments—and death. An artist, she has created a hybrid of a graphic novel with comic-book style drawing on the left page and traditional prose facing on the right, with variations of this format now and then.     
       
The imaginative world of the book ranges widely in mood, topic, and subject matter, and there is a helpful organization to group the material.
Her Preface tells us how drawing helped her gain some power over “the bogeyman that is my cancer” (p. 1). In her Prologue, she tells of “living in the shadows,” or “liminal spaces,” but choosing to occupy these as best she can (p. 3).            

Part One lays out the medical facts and dilemmas. The sections are Diagnosis, Treatment, and Side Effects. The author describes the turmoil of being sick with no clear cause, the emotional impact of the serious diagnosis on her and her family, also nausea, loss of fertility, dilemmas of pain management, and many side effects of treatment, including weight loss as well as sudden and torturous menopause.
  
Part Two explains her social status, her marriage, her “mixed-bag inheritance” (including high-risk Ashkenazi genes), and social aspects, including feeling invisible as a patient, accepting help from friends, being in a support group, and what does a likely “early demise” mean for her, an atheist?
         

Part Three explores the many emotions in sections for hope (using clinical trials, for example), gratitudes (“At least I’m wasting, not bloating”), wishes, fears, and “Managing Anxiety at Home” (pictures of yoga, gardening, long walks, house cleaning), self-blame, and—nonetheless—dreams. The final section “Incurable” names her current status: “In treatment for the rest of my life,” but the facing picture shows her as a large powerful bird flying among dramatic clouds with the words “I mean what do I have to lose?” Her prose affirms: “Live like a tornado, when I can.” 

View full annotation

Annotated by:
Glass, Guy

Primary Category: Literature / Poetry

Genre: Biography

Summary:

Robert Lowell: Setting the River on Fire is “a study of genius, mania, and character” of American poet Robert Lowell (1917-1977).  It is meant to be neither an autobiography nor a critical study of Lowell’s literary output, but a study of an artist and his lifelong battle with Bipolar I Disorder, and an appreciation of how his art and illness were inseparably linked. The author, Kay Redfield Jamison, is a distinguished psychologist who has been quite open about her own struggles with the same disease, and whose lifework consists of exploring the link between Bipolar Disorder and creativity.     

Eschewing a purely chronological approach, Jamison divides her work into sections entitled “Origins,” “Illness,” “Character,” “Illness and Art,” and “Mortality.” In the first, she traces the history of mental illness within the poet’s illustrious Boston family.  We learn that Lowell’s great-great-grandmother was institutionalized at McLean Asylum for the Insane, which was to be the site of several of the poet’s own hospitalizations.  “Illness” is a clinical case study in prodromal childhood symptoms that progress to full-blown manic episodes. We follow the progress made by 20th century psychiatry from psychotherapy and ECT to Thorazine, and, finally, with the introduction of Lithium, to the possibility of prophylaxis against recurrences.
Later, in “Illness and Art,” Jamison brings her thoughts about creativity and art to full fruition by discussing what her research reveals about writers and artists.    

Appendices include diagnostic criteria for Bipolar Disorder, and an explanation of how Lowell’s psychiatric and medical records were made available by his daughter for the benefit of this volume.  

View full annotation

Annotated by:
Bruell , Lucy

Primary Category: Literature / Nonfiction

Genre: Longform journalism

Summary:

Emergency Doctor is a riveting, informative account of the workings of the Emergency Department at Bellevue Hospital in New York City, the oldest public hospital in the country.  On any given day, tourists, residents, the wealthy and those who live in shelters come to the Emergency Department, some with life threatening injuries and others who need little more than a hot meal and a shower.  No one is turned away.  

Published in 1987, the book was written by a former editor at Reader’s Digest in cooperation with Dr. Lewis Goldfrank, the former Director of Emergency Services and a leading toxicologist.  Goldfrank’s personal story of his path to emergency medicine and his experience in creating the Emergency Department out of what was once known as the Emergency Room frame the narrative, but the main focus is on the day to day activities of the patients and staff in the Emergency Department.  Because Bellevue is NYC’s main trauma center, the book is rich with stories of trauma including construction accidents, cardiac arrests, fires and suicide attempts among others.  Even the title chapters-- "A Question of Poison," "An Alkaloid Plague," "The Case of the Crazed Executives," for example—convey the urgency and medical detective work needed for each person who comes through the triage area. 
“We don’t know if a patient is alive or dead when we first see him,” Dr. Goldfrank says.  “And we’re never sure what we’re going to find, or what kind of emergency medicine we may be called upon to practice—surgery, neurology, pediatrics, psychiatry, cardiology, obstetrics. (p118)   Accident victims are stabilized in the trauma area and rushed to the operating room. People with cancer, or TB, children who have been abused, broken bones, suicide attempts, accidental or intentional poisoning and overdoses—all must be evaluated and decisions made whether they should be admitted to a medical floor, the operating room or perhaps kept for observation.

Beyond medical expertise, however, working in the Emergency Department requires a large dose of compassion to cope with the needs of patients who rely on the Emergency Department for basic care for their chronic conditions such as asthma,  and social services because they lack a place to live or have no means of support.   Perhaps they need to detox from alcohol or have mental health issues.  “Emergency medicine demands the most intense involvement personally and intellectually,” observes Dr. Stephen Waxman. “Every area of clinical medicine is practiced, every emotion is taxed.”  (p 119)      



View full annotation

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Volck’s memoir describes his medical practice and learning in a variety of settings (Cleveland, Baltimore, Cincinnati), but, more importantly, in non-metropolitan places, such as Tuba City on the Navajo Reservation in Arizona and rural clinics in Honduras. He suggests that his knowledge of medicine has largely come as he has practiced it and not from his formal education. Further, he believes that best medical practice is not primarily high-tech, urban, or industrial. Each of the 15 chapters has a title—a topic, a person, or a theme—but also one or more locations specified. For example, we have “Chapter One, A Wedding, Navajo Nation, Northern Arizona,” suggesting the importance of culture and locale. Further, the chapters include personal associations from several realms beyond the topic and place as Volck seeks to understand medicine, healthcare, and how we live in the world.           

Of the first seven chapters, five are set in Navajo land, where Volck is an outsider by his cultural heritage and his profession, a doctor with a pediatrics specialty. From time to time he reflects on his training, the English verb “to attend,” and specific patients, such as two-year-old Alice in Tuba City and eight-year-old Brian in Cleveland. Both children died while in his care. Working on the front-line of medicine, he considers the weaknesses of our modern attitudes toward death and our wishes for control. He also wrestles with personal lifestyle issues of balancing medicine, family, and an urge to write.
 
           
Other chapters describe restlessness in his profession, the growth of his family (including the adoption of a Guatemalan baby girl), hiking in the Grand Canyon, camping in the rain, and a retreat with Benedictine monks. Chapter 11 “Embodying the Word” discusses literature and medicine, lectio divina (a Benedictine reading practice), and the need to listen carefully to patients’ stories.
           
The final chapter returns to Cincinnati, Honduras, and Tuba City. Volck has found more projects in the Navajo Nation, including a youth service project from his church. With permission, he conducts interviews and plans a book on the Navajo, “drawing on cultural history, anthropology, history, medicine, and politics” (p. 201).

View full annotation

The Fall

Singh, Tarsem

Last Updated: May-04-2017
Annotated by:
Clark, Mark

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

This film focuses on the interaction between 5-year-old Alexandria and Roy, a Hollywood stuntman in the early days of film.  The two are residents of a rehabilitation hospital, and both are recovering from falls they’ve taken: he’s paralyzed from the waist down as a result of a failed stunt; she’s broken her humerus as the result of a fall she’s taken in an orange orchard.  (A child in a migrant family, she’s been tasked, at 5 years of age—presumably out of economic necessity—with climbing ladders to pick oranges.)  Having accidentally intercepted an affectionate note—Alexandria’s child-missive—meant for the kindly but preoccupied nurse Evelyn, paralyzed Roy befriends the girl and quickly wins her over by telling her the wondrous tale of a masked bandit and his companions, all of whom have been betrayed by the evil emperor Odious, and all of whom are united in their quest for vengeance against the ruler.  While Roy narrates the story, we see it take place through Alexandria’s eyes, and the characters she envisions are drawn from people in her life.  The role of the heroic masked bandit she assigns to Roy himself, blended to a poignant degree with her deceased father.  Alexandria sometimes interrupts and asks questions about or challenges the story’s development, whereupon Roy makes adjustments: it’s clear that the story is a co-constructed project.  Roy has, however, become increasingly despondent over his paralyzed condition and over the fact that his fiancée has broken off the engagement as a result of Roy’s condition.  As time goes on, Roy uses his unfolding story as a means of manipulating Alexandria to retrieve morphine from the hospital dispensary.  He tries and fails to commit suicide with the pills that Alexandria supplies.  In the process, he winds up bringing about a severe injury to the child.  Filled with remorse and guilt, Roy alters his story such that it can be a source of separation between him and the girl: it becomes cruel and violent, and suggests that the hero is a weak, inglorious imposter who deserves to die.  The anguished Alexandria protests, demanding that Roy change the story.  Roy refuses, insisting that “It’s my story.”  But Alexandria retorts, “It’s mine, too.”  And Roy relents.  The masked bandit of the story is redeemed, and Roy himself is as well.  The film closes first with Roy, Alexandria, the hospital patients and staff watching the film in which Roy’s acting had led to his accident.  As the scene approaches the point where the accident had occurred, Roy feels understandable anxiety; but the film has of course been edited.  Roy is relieved, but turns to Alexandria, in the hopes that she is not terrified.  He finds her beaming.  Then the film we are watching, The Fall, shifts to a rapid series of black-and-white footage of stunts—the effect is reminiscent of the love scenes gathered at the end of Cinema Paradiso—narrated by the marveling Alexandria.  Each clip features a person in imminent, catastrophic danger—who is then impossibly rescued at the last second by fortunate chance.  As Alexandria blows us kisses through a character who is falling backward, we are left in a state of bewildered gratitude over this strange gift of stories we human beings offer each other—stories that assure us over and over again how, confronted with the calamities we see no way of escaping, we are nonetheless saved. 

View full annotation

Annotated by:
Mathiasen, Helle

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

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.

View full annotation

Annotated by:
Clark, Mark

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

The Renewal of Generosity: Illness, Medicine, and How to Live contemplates the phenomenon of generosity as it is realized in the stories of physicians and patients.  For Arthur Frank, generosity is grounded in the willingness of people to give themselves over to dialogical processes of communication wherein participants best realize themselves through relational engagement: generous, dialogical communication leads to a renewal and realization of human being. Health care systems today tend to impede communicative generosity, however, and the result is a de-humanization and de-moralization of both physicians and patients.  As a remedy, Frank proposes, first, that we re-figure our conceptualization of the physician-patient relationship—from the economic or business metaphor of “provider” and “client,” we should turn to the metaphorical conceptualization of “host” and “guest,” which clearly has implications for manner of treatment and communication that occurs in the relationship.  In addition, Frank turns to and thinks with stories of physicians and stories of the ill to reflect on the ways that generosity is realized.  Drawing on the wisdom of the striking philosophical triumvirate of Marcus Aurelius (Stoicism), Mikhail Bakhtin (Dialogism), and Emmanuel Levinas  to amplify the reflections emerging from the physician and patient stories, Frank ultimately proposes “exercises” for training to generate a vivifying generosity within the medical profession, which can in turn lead to a re-humanization and re-moralization for physicians, improved care for patients, and enhanced flourishing for all.



View full annotation

Summary:

Andrew Schulman is a New York guitarist with a long history of playing in hotels, restaurants, small groups, and formal concerts—even in Carnegie Hall, the White House, and Royal Albert Hall. His memoir describes his experience as a patient in a Surgical Intensive Care Unit (SICU), where he was briefly clinically dead. Six months later he began a part-time career as a guitarist playing for patients and staff in that very same SICU. 
           
In July of 2009, Schulman underwent surgery for a pancreatic tumor (luckily benign) but crashed afterward. He suffered cardiac arrest and shortage of blood to his brain for 17 minutes. Doctors induced a week-long medical coma, but his condition worsened. His wife asked if he could hear music; he had brought a prepared iPod. When the opening chorus of Bach’s St. Matthew Passion played in his earbud, the computer monitor showed that his vital signs stabilized, and he survived. The nurses called it a miracle.
           

Convinced of music’s healing power, Schulman proposed that he return and play for patients and staff. He describes various patients for whom he played over the next six years (with permission or changes of name and details). He explains his approach to choosing music, pacing it, and feeling hunches for what is right for a given patient. He interviews experts and reads scientific papers in order to explain how the brain processes music. Music reminds patients of their earlier, healthier lives; it coordinates right and left brain; it brings calmness and peace.
 
Imaging studies show that music (and emotionally charged literature) stimulate the brain regions associated with reward—similar to euphoria, sex, and use of addictive drugs.

Schulman knew some 300 pieces from a wide range of music, but his illness damaged his memory so that he could recall only six of them. That meant his work relied on sheet music. Near the end of the book, however, his “rehab” of playing three times a week, concentrating on the music, and intending to help others—all this allowed his brain to heal, and he began to memorize as before. Schulman consults with experts and undergoes two brain scans and other studies that show the neuroplasticity of this brain that allowed it to rewire and memorize once again.

Although Music Therapy is discussed as an allied profession, Schulman is considered, rather, as a “medical musician” playing only in the SICU. Provision of music, whether by Music Therapist or “medical musician,” is, however, usually not covered by insurance and therefore not available to patients.           

There’s a six-page Afterword by Dr. Marvin A. McMillen, who Schulman describes as “central” to his survival. McMillen writes that being both a critical care doctor and a critical care patient himself (polycystic kidney disease), he knows the importance of emotional support to patients, healing environments, and the power of music. McMillen was also pivotal in allowing Schulman to play in the SICU.

View full annotation

Is It All in Your Head?

O'Sullivan, Suzanne

Last Updated: Mar-17-2017
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

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)

View full annotation

Annotated by:
Clark, Mark

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

Wandering in Darkness is an intricate philosophical defense for the problem of suffering as it is presented by medieval philosopher Thomas Aquinas.The work addresses the philosophical / theological problem of evil, which might be expressed as follows:  if one posits an all-good, all-powerful God as creator, yet suffering exists in the world, then (a) God must be evil, since he created it; (b) God is less than all-powerful, since suffering came to be in his creation, and he could not stop it; (c) God is evil and weak, since suffering came to be in his creation, and he did not want to stop it; or (d) suffering is an illusion.  No alternative is, of course, very satisfying. In her book,   Eleanore Stump augments Thomas Aquinas’s theodicy by reflecting upon what she calls “the desires of the heart,” a dimension of human experience that Aquinas leaves largely untreated in his consideration.  Stump explores this dimension by breathtaking exegeses of Biblical narratives as narratives: the stories of Job, Samson, Abraham, and Mary of Bethany.  “Understood in the contexts of [these] narratives,” Stump argues, “Aquinas’s theodicy explains in a consistent and cogent way why God would allow suffering" (22).

View full annotation