Showing 1 - 10 of 912 annotations tagged with the keyword "Patient Experience"

Sawbones Memorial

Ross, Sinclair

Last Updated: May-31-2023
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction — Secondary Category: Literature /

Genre: Novel

Summary:

Dr Hunter’s 75th birthday in April 1948 falls forty years to the day after he started practice in the little prairie town of Upward. He is retiring, moving away to the big city of Saskatoon, and the citizens have gathered to say fare-well. They celebrate in the patient lounge of the new hospital soon to open bearing the name of this long-time servant of all Upward’s needs--physical, mental, social. The doctor has donated his late wife’s piano and the board is already planning to sell it for much-needed cash. It tinkles softly, unwelcome songs are awkwardly sung, coffee and sandwiches served, while the crowd of locals chatters away sotto (and not so sotto) voce, with each other and the doc. 

Over the course of the evening, forty years of memories unfold: births, couplings, deaths, desires, hostilities, random acts of kindness and of spite. Folks sidle up to the doc to express thanks for his support and wisdom. The pharmacist wishes he had prescribed more pills. The journalists want him to spill secrets for a feature article in the local rag. The minister engages him in a debate over the existence of God and the meaning of life—both of which the medic denies. Gossips watch, whispering to each other about the doctor’s imagined survival and his dead wife whose alleged frigidity justified his supposed numerous infidelities. 

Shopkeeper Sarah’s revisits her embarrassed memories of adolescent attraction, that ripened into adult affection and pleasure that the doctor has long treated her son Dunc with almost fatherly care, taking him and the big but isolated Ukrainian boy, Nick, on house calls. Home from overseas with an English war-bride and now running the store, Dunc presides over the evening, trying to smooth conflicting undercurrents. The gossips speak sweetly to the newcomer bride and behind her back predict the marriage will fail.

It emerges that the incoming young medic will be Nick, once mercilessly bullied as a “hunky kid” by a few shiftless bigots still languishing in Upward. They are convinced that he is returning to extract his revenge. The old doctor defends Nick in his final words and urges his patients to help the young successor. He knows that they can briefly come together in a crisis, but he scolds them for their chronic lack of charity to strangers and to each other.

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Your Hearts, Your Scars

Talve-Goodman, Adina

Last Updated: May-25-2023
Annotated by:
Field, Steven

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

This slim volume of essays written by a young woman who had a heart transplant packs a wallop, albeit an understated one.  The author, who had a congenital cardiac anomaly that required several surgeries—the first at one day old, another five days later, two more at the ages of two and four years—ultimately developed severe congestive heart failure at sixteen and underwent cardiac transplantation at the age of nineteen (none of this, by the way, is a spoiler; the introduction, written by her sister, lays this out in detail).   Eleven years later she developed lymphoma, a side effect of the immunocompromise induced by her anti-rejection medications, and passed away at the age of 32.  This book was published posthumously, the essays collated and edited by her sister and her friend and colleague at the literary magazine One Story. 

The essays—there are seven of them—deal with life experiences, mostly in the form of encounters with other people, mostly post-transplant.  “I Must Have Been that Man,” which won the Bellevue Literary Review’s Non-Fiction Prize,  begins with a post-party liaison but centers on the author’s meeting with a man in an upended wheelchair out on the street on a rainy night; “Men Who Love Dying Women and Fishing” speculates about what might attract a man to a woman with a terminal illness; “Your Heart, Your Scars, Zombies” offers a novel take on the idea of a zombie occupying a liminal space between the living and the dead and analogizes that to the situation of the post-transplant patient; “Thank God for the Nights That Go Right” speaks to the serendipity—or Higher Power?—that seems to guide our experiences.   They range over the timeline; one recounts a pre-transplant trip with other ill children to San Diego, others come from later in the author’s life.  There is no linear temporal progression to the essays; rather, one gets the impression that they are simply being remembered spontaneously.  Nonetheless, a clear personal narrative emerges.

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Living

Hermanus, Oliver

Last Updated: Apr-13-2023
Annotated by:
Brungardt, Gerard

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Living is a remake of Akira Kurosawa's Ikiru, itself his homage to Tolstoy's novella The Death of Ivan Ilyich. The screenplay is by Kazuo Ishiguro, who may be the perfect person for the job - born in Japan, raised in Britain, Nobel laureate in literature. The movie stays faithful to the original (some scenes almost frame for frame) while at the same time providing a more contemporary time, place, and English language (with the run time decreased from 143 to 102 minutes) all combining to provide a greater accessibility for many today. 

The protagonist, Mr. Williams (Bill Nighy), is the long-standing director of the bureaucratic Public Works Department in post-WWII London. When given a terminal prognosis he starts asking the big questions of life, quickly finding out that not only does he not know the answers but is struggling to phrase the proper questions.
 
After a brief time trying to find his answers through a night on the town, Williams befriends a former Public Works employee, a bright and vivacious young lady who, journeying with him, leads him to the threshold of what he is looking for. The film remains loyal to one of Kurosawa's most acclaimed devices when, after his funeral, we are told the rest of Williams' journey to find himself as his co-workers share their memories, piecing together the final few weeks of his life.    

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Plague Years: A Doctor's Journey through the AIDS Crisis

Slotten, Ross

Last Updated: Mar-13-2023
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Dr. Ross Slotten chose family medicine to serve patients from cradle to grave. But, as he was entering practice, the AIDS virus was entering the community where his practice was situated, and he found himself serving patients much closer to the grave than the cradle. 

In June 1981, a few weeks before I began my internship in family practice at [St. Joseph Hospital in Chicago], the Center for Disease Control in Atlanta had published the first report of a strange lethal infection among a cohort of gay men in Los Angeles. I had no clue then that the disease would soon kill friends, former lovers, colleagues, and patients; devastate tens of millions of people and their families worldwide; and consume my entire professional life and more than half my chronological one. (p.14)

From both the circumstance of time and place he found himself in, and the sense of necessity and compassion that claimed him, Slotten’s professional trajectory unexpectedly shifted away from traditional family medicine towards specializing in AIDS. His interest in AIDS, however, extended to personal considerations, because as a gay man, he was part of the population at risk, and harbored the same anxieties and fears he saw in his patients and throughout his social circles. His patients were principally gay men because of his geographic location in an established gay community and the resulting referral patterns. The book chronicles both his experiences as a physician at Ground Zero taking care of gay men with AIDS, and his experiences as a gay man at risk for AIDS. For Slotten, these experiences were not independent of one another, which makes for rich insights on the complexities of both. 

Slotten spent a lot of time at St. Joseph Hospital because his patients required intense medical support and specialized services. He tells how he and his practice partner pushed for establishing a specialized AIDS unit in the hospital. They bumped up against the usual bureaucratic obstacles, plus a few more concerning issues specific to AIDS patients, but they ultimately prevailed. Slotten “was to spend the next fifteen years there, often heartbroken, occasionally inspired” (p. 109). In contrast, Slotten recounts how some specialists he called for help with particular patients would not avail themselves to AIDS patients. Those occurrences stuck with him: “I couldn’t forgive those other physicians for abandoning me and my patients in the hours of our greatest need” (p. 108). 

A blending of wanderlust, intellectual curiosity, and an urge to understand “the AIDS epidemic as a public health problem, not just a medical condition” (p. 154), motivated Slotten’s pursuit of formal postgraduate education in public health. He supplemented this education with a trip to Namibia, and reports the observations he made there, among them how “an epidemic like AIDS would be unstoppable” (p. 165), given the factors he saw at work then.

With whatever little time he had left for volunteer and advocacy work, Slotten stayed local. He talks about the volunteer-run health clinics where he worked, and the housing facility he helped set up for homeless people with AIDS. He left protesting at the Food and Drug Administration, the National Institutes of Health, and the annual International AIDS Conference to others while he focused on his patients, his studies, his volunteer work, and his own safety.

The decade of the 2020s is approaching when Slotten writes about the preceding three-and-a-half decades. As he finishes the book he is still caring for people with HIV, but the horrible complications of AIDS are now infrequent since the availability of effective medications. His practice had been reliably stable and predictable for some time, a circumstance he could only dream of when he first started. Alas, that dream had ended by the time the book was released on July 15, 2020, when Covid was surging.

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What She Left Behind

Wiseman, Ellen

Last Updated: Jan-03-2023
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Izzy is a teenager who has been in foster care for a decade since the age of 7 when her mother was imprisoned and judged insane for having killed her father. She struggles with a desire to cut herself. Her current foster parents, Harry and Peg, seem kindly and engage Izzy in their task to catalogue artifacts from the nearby state asylum that has recently closed. 

Izzy is given the journal of Clara, a patient who, at age 18 in 1929, was pregnant by her Italian lover, Bruno. She was committed to the asylum by her angry father.  Clara gave birth, but her baby girl was taken from her. She observed how the brutality of the hospital damaged those who did not belong there, eventually provoking the mental illness it purported to treat. With the help of a gravedigger, Bruno planned an escape, but their plan was uncovered, and Bruno died.

Izzy’s own story unfolds as she works her way through the journal, subjected to bullying and tormented by her anxieties. Peg kindly arranges to take Izzy to see her dying birth mother in prison, where she learns that the murder of her father was to prevent him from abusing young Izzy.  

Spoiler alert! Izzy learns from an elderly nurse that the asylum director took Clara’s baby for himself and that Clara is still alive. She reunites the mother and child, who is now a grown woman. Izzy joyfully learns that Peg and Harry will formally adopt her.

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Bookends: A Family Doctor Explores Birth, Death, and Tokothanatology

Boron, Susan

Last Updated: Dec-06-2022
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Through ten short chapters, family doctor Susan Boron explains the origin of her neologism, “tokothanatology,” the study of common practices that surround both birth and death, events that “bookend” our existence. Daughter of an obstetrician who pioneered family-centered birth and spouse of a man who worked in palliative care, Boron noticed the tremendous similarities in the gestures, rituals, and obligations of dealing with both the beginning and the end of life. The obligations extend to the loved ones in the sphere of patients in care--a practice, she writes, “from pre-cradle to post-grave.” 

One chapter reviews the rituals emerging from many different cultures and religions; another examines portrayals of birthing and dying in image and word; yet another addresses the impact of sudden and unanticipated outcomes. Ethical and legal dilemmas and the contingencies imposed by time and place are discussed frankly.  

Recognizing the advantages of medical technologies, she is nevertheless skeptical of their utility in every case and includes practical advice for dealing with pain, showing that midwifery techniques could enhance palliation. Throughout, she acknowledges that things have changed, are changing, and will change again. Sources are referenced in footnotes. 

In the end, the repeated message is one we’ve heard many times before, offered in a refreshing way: the importance of empathy and of listening to the patient's wishes in birthing and in dying. 

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The Mouth Agape

Pialat, Maurice

Last Updated: Nov-07-2022
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

“Can you take your mother home? There’s no point our keeping her here,” the doctor says to Phillipe about his mother, Monique. Her breast cancer has spread to her spine and probably her brain. Monique had been staying with Phillipe and his wife, Nathalie, in their cramped apartment in Paris during her treatment. They took her to her home in Auvergne, and there she remained, confined to her bed, until she died. 

Monique’s husband, Roger, cared for her while also managing the family retail clothing store beneath their apartment. He spoon-fed her, cleaned her, and tried to make her comfortable with the aid of visiting nurses. Phillipe and Nathalie came from Paris to help care for Monique and provide some relief for Roger. As Monique deteriorated, she required more and more of their attention, which was made all the more difficult when she lost her ability to speak. Fatigue set in and nerves frayed. Nevertheless, when Monique died, tears were shed, hugs were shared, and memories were recounted. 

Through it all, though, not one of three family members exhibited a bit of grace. As they had before Monique became ill, they lied to each other, cheated on each other, and stole from each other while caring for her. None were above physical abuse—“you slapped me for no reason,” Nathalie reminds Phillipe, Roger paws his female customers just below where Monique lies ill in her bed. Monique, no angel herself, had behaved similarly before cancer crimped her style. After the funeral, Roger returned to his store, and Phillipe and Nathalie to Paris, where they ostensibly would pick up where they left off with their lives of banal wantonness.  

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Strangers to Ourselves: Unsettled Minds and the Stories That Make Us

Aviv, Rachel

Last Updated: Oct-18-2022
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

When Rachel Aviv, the author of Strangers to Ourselves, was six years old, she simply stopped eating.  She said she got the idea from the Yom Kippur fast.  She was promptly checked into a psychiatric hospital where she became one of the youngest-ever patients to be given the diagnosis of anorexia.  Through associating with older, more seasoned anorexic girls she became a sort of “anorexic-in-training” (p.13). Fortunately, after a few months she snapped out of it, and was discharged.  She never suffered from the same symptoms again.   

As an adult, Aviv began to think about what had happened to her.  The only remnant of her experience was a diary entry from age 8: “I had a diseas called anexexia” (p.231).  Had she even had the disorder, or had the diagnosis been a mistake?  Why had she not gone on to have “an anorexic ‘career’” (ibid.), while one of the girls who had mentored her ultimately died of anorexia-related causes?   In order to answer these questions for herself, Aviv meets with the therapists who treated her more than thirty years ago as well as with the family of her deceased copatient.   

As a result of Aviv’s introspection, she becomes intrigued by people whose psychiatric diagnoses do not fully capture the complexities of their situation.  Strangers to Ourselves presents detailed case histories of several such individuals.  Bapu is an Indian woman whose visions have caused her to be diagnosed with schizophrenia.  Are they delusions, or is she a mystic?  Naomi is a socially disadvantaged black woman who has struggled unsuccessfully to get ahead.  During a manic episode, she jumps into a river with her young twins, one of whom dies. Her claim that “white people are out to get me” (p. 146) is ignored because her doctors insist that “delusions couldn’t on some level make sense” (p. 150). Yet another woman, Laura, bounces from diagnosis to diagnosis, and sleeps fourteen hours a day because of all the medication she is on.  She becomes one of these people who no longer even know if their lack of functioning is “due to their underlying disorder [or] the heavy medications they’d taken for it” (p. 203).      

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Cancer Confidential: Backstage Dramas in the Radiation Clinic

Hayter, Charles

Last Updated: Aug-23-2022
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

All the [medical] world’s a stage! In elegant prose, with Felliniesque flights into whimsical metaphor, physician-historian-playwright Charles Hayter describes his encounters with cancer, as a doctor and as a son, and how the experience changed him as a person. 

Just as he finishes his residency training as a cancer specialist, his stoic physician father develops cancer. The story of that family illness is interwoven with vivid case histories of patients, recounted personally rather than clinically. These patients display many of the characteristic reactions and behaviors of his own father. 

Several other themes are prominent: the losing battle against death – or rather Death--who is a character lurking in the corners of the consultation rooms; the tensions of a son trying to please his difficult parents with advice and understanding that they seem not to want; the bravery of a gay man coming out to his wife and children to find a new place in the world.  

These struggles are placed on a background of the nebulous status of radiation therapy, a maligned and misunderstood specialty.

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Wild Boy

Dawson, Jill

Last Updated: Jun-15-2022
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Young doctor Jean-Marc Itard is serving in the Paris home for deaf-mute children. When a “wild boy” without speech is found near a village in Aveyron, France, Itard accepts the challenge of educating him. Many senior colleagues, including Philippe Pinel, opine that it will be impossible, even when Itard determines that the boy is not deaf. The lad, now named Victor, seems to be about ten years old, but his small size owing to malnutrition may be deceptive; he quickly reaches puberty. Helped by the care and empathy of the home’s housekeeper, Madame Guérin, and Julie, her daughter, Victor learns to perform several domestic tasks but manages to speak only a few words.

 His situation is a mystery. Caregivers marvel at how he had been able to survive alone in the woods for several years. They wonder if he ran away from an abusive home, or if he was deliberately abandoned because of his disability. A crisis emerges when a woman appears claiming to be his relative. Itard eventually abandons the effort to educate Victor, but he is allowed to continue living with the Guérins.

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