Showing 1 - 7 of 7 annotations tagged with the keyword "Palliative Care"

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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Annotated by:
Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

After 65 years of marriage, two life-partners face the prospect of final separation, as one of them develops multiple myeloma. This is the crisis that led Irvin Yalom, eminent psychiatrist, novelist, and pioneer of existential psychotherapy, and his wife Marilyn, acclaimed feminist author and historian, to collaborate in writing the story of their journey through Marilyn’s final months of life. In the resulting book, Irvin and Marilyn write alternating chapters until Marilyn becomes unable to write. After her death, Irvin continues with the story of his bereavement.  

Marilyn’s chapters include reflections on love and illness, ranging from Emily Dickinson and Henry James to Paul the Apostle. She frequently expresses her gratitude: “I can still talk, read, and answer my emails. I am surrounded by loving people in a comfortable and attractive home.” (p. 20) Most of all, she is thankful for her husband, “the most loving of caretakers.” (p. 15) Yet, as her disease progresses, she comes “to the understanding that I would never be the same again—that I would pass through days of unspeakable misery while my body would decline and weaken.” (p. 76) She decides to pursue the option of physician-assisted suicide, which is legal in California, when her suffering becomes overwhelming.  

In his chapters, Irvin resists this decision, maintaining hope for additional “good” life, despite all evidence to the contrary. Near the end, Marilyn’s pain and other symptoms become so severe that she cries out, “It’s time, Irv. It’s time. No more, please. No more.” (p. 139) Her physician arrives, confirms her intention, and surrounded by her whole family, Marilyn sucks the liquid through a straw and quietly passes away.

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Annotated by:
Field, Steven

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Most of us are aware that the discipline of Palliative Care, with its focus on excellent pain management, other comfort measures, and psychosocial and spiritual counseling, has made a dramatic difference in the way patients are treated near or at the end of life.   However, for most of us, knowledge of Palliative Care is usually limited to how it functions in so-called “first world” countries.  What is Palliative Care like in areas around the world that have less-effective systems of health care delivery? 

Lucy Bruell’s documentary, Oli Otya:  Life and Loss in Rural Uganda, aims to tell this story.  Bruell, an award-winning documentarian (and coincidentally—and full disclosure—the Editor-in-Chief of the NYU Literature, Arts, and Medicine Database), follows a husband-and-wife team, an internist and a palliative care specialist, who travel each year to Uganda to volunteer with a small palliative care service based in a rural hospital.  Along with the team nurse, nursing assistant, and spiritual counselor, and a medical student who has accompanied them for this trip, they see patients in the hospital, the clinic, and most of the time, in the patients’ homes, often covering many miles in a day in this rural area of the country. 

It is the stories of these patients that constitute the heart of the film.  A woman who has been catastrophically burned in a revenge crime, a man with metastatic cancer who can no longer walk, a woman with end-stage rheumatic heart disease who insists on gifting the team with a live chicken for their work, a young man with a progressive neurodegenerative disease whose mother ascribes his behavior to demons—we meet these and other patients as the team makes its rounds, interacts with villagers and herbalists, and fights to overcome shortages of critical medicines.

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5B

Haggis, Paul; Krauss, Dan

Last Updated: Apr-17-2020
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

5B is a documentary about the special unit created at San Francisco General Hospital (Ward 5B) in 1983 to take care of people with AIDS. Three years later, it moved to the larger Ward 5A, where it remained in operation until 2003 after the introduction of treatments effective enough to drastically reduce the demand for hospitalization and standards of care for AIDS patients were in place throughout the hospital. The documentary covers the medical, social, and political considerations surrounding the opening of Ward 5B, and the AIDS epidemic during that time.

The story is told from various perspectives through interviews with key figures in its development and operation, and archival footage of the ward and AIDS activism in the community. The most prominent among the key figures is Cliff Morrison, a clinical nurse specialist who spearheaded the idea for the unit and then managed it. Several other nurses who served in staff and supervisory positions are featured. Participating physicians include Paul Volberding, an oncologist at the time who became pivotal in the development of effective HIV treatments, and  Julie Gerberding, a physician treating patients on the unit who later became the Director of the Centers for Disease Control (CDC). Lorraine Day, the chief of orthopedic surgery at the hospital when the unit opened is heard often as an opposing voice. Hank Plante, a local television news reporter also appears frequently to offer his perspectives on many of the social and political issues swirling around the unit. Among other participants are AIDS activists, volunteers, and family members of patients on the unit.

Several storylines frame the documentary including how nurses drove the unit’s inception and then were instrumental in running it. “Nurses were in charge,” said Volberding, admiringly. Interwoven throughout the film are the experiences of the patients and individual nurses, including one nurse who was infected with HIV from a needle stick. “Those nurses were the real heroes,” said one activist.  

The unit and those who worked there also encountered opposition from inside the hospital. The nurses of this unit practiced in ways they considered safe but not in such a manner that would preclude them from touching patients or require that they don so much protective gear they become unseeable. Nurses and other clinicians from other parts of the hospital objected and did not want to be compelled to adopt practices they thought endangered them on the occasions they took care of AIDS patients. The film follows this story through union grievances and public debates to their conclusion, which sided with the unit nurses and their advocates.

The story is told against a backdrop of gay rights activism in the 1970s that led to AIDS activism with its influence on how the unit operated. Also getting attention is the fear AIDS struck in society and the resulting social backlash at a time of federal government insouciance. This fear continued up to the time the federal government recognized the epidemic and began taking action, relieving some of the tension but never eliminating it. The documentary ends with key participants reflecting on their experiences with the unit; most were proud, some bitter, and a few a little of both.

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The Little King

Rushdie, Salman

Last Updated: Dec-19-2019

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

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

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

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

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

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Summary:

Michael Pollan, a journalist who is known for his work on food, takes on mind-altering drugs, or more specifically, psychedelics. According to Pollan, “after several decades of suppression and neglect, psychedelics are having a renaissance” (p. 3). His aim is to tell “the story of this renaissance” (p. 4). 

Pollan pegs the beginning of the renaissance to three events in 2006. The first was the symposium surrounding the one–hundredth birthday celebration of Albert Hoffman, who is credited with discovering LSD (he was in attendance and lived for another two years). The symposium put a spotlight on a few studies of psychedelics that inspired other researchers and practitioners to enter or stay in the field. The second event was a U.S. Supreme Court decision permitting importation of a banned psychedelic substance for religious purposes, which effectively reanimated federal government recognition of psychedelic drugs. The third event was the publication of a well-received study showing the psychological effects of certain psychedelic drugs, and in so doing, conferred some credibility and encouragement for further study (and use). Psychedelics were beginning to inch their way from counterculture to mainstream culture.

Before Pollan picks up on what happens after the eventful year of 2006, he goes back to the early 1950s when psychedelics first attracted attention as treatment for “addiction, depression, obsessive-compulsive disorder, schizophrenia, autism, and end-of life anxiety” (p. 141). He quotes researcher Stephen Ross, who asserts that during this time, “there had been forty thousand research participants and more than a thousand clinical papers!…Some of the best minds in psychiatry had seriously studied these compounds in therapeutic models, with government funding” (pp. 142-143). The trajectory towards therapeutic uses would come to an end in the 1960s when “a moral panic about LSD engulfed America, and virtually all psychedelic research and therapy were either halted or driven underground” (p. 185). Pollan identifies several contributing factors to the precipitous reversal in the status of psychedelics. Among them were their associations with Timothy Leary (“Turn on, tune in, drop out”) and with counterculture movements that were seen as threats to mainstream society in general. The era ends in 1970 when psychedelics were made illegal in the U.S., after which they were largely forgotten. They began to reappear in the 1990s, which rekindled an interest in them that would reach an inflection point in 2006.

Bridging the mid-twentieth-century history Pollan provides and the era commencing in 2006 he describes in detail later, is a chapter reporting on his own experiences with psychedelics. Pollan arranged three separate “trips” with three individual psychedelics: psilocybin, LSD, and the little-known 5-MeO-DMT, or “The Toad.” He carefully chose a tour guide for each one. Pollan experienced what he interpreted as a dissolution of his ego, which made more room for his consciousness: “I was present to reality but as something other than my self” (p. 264). He also reported spiritual and mystical experiences, which surprised him because he is not religious in much of any way, and he found others who had similar experiences.  
Even the most secular among them come away from their journeys convinced there exists something that transcends a material understanding of reality: some sort of a ‘Beyond.’ (p. 85)  
The term “spiritual” for Pollan became “a good name for some of the powerful mental phenomena that arise when the voice of the ego is muted or silenced” (p. 288). 

In another chapter bridging the past and the present, Pollan covers the neuroscience of psychedelics and the current understanding of how the brain works. The chapter will appeal mostly to neuroscientists, pharmacologists, and clinicians. It’s not required to appreciate what the book offers on the whole. 

Pollan devotes a chapter to ongoing investigations into clinical uses for psychedelics in near death, addiction, and depression. These investigations had moved into mainstream biomedical research institutions. Results were encouraging enough to generate additional studies, expand treatment programs, and motivate the U.S. Food and Drug Administration (FDA) to push researchers for more information on depression in particular. Pollan also reports that “dozens of medical schools have asked to participate in future trials, and funders have stepped forward to underwrite those trials” (p. 350). 
 

In the final chapter, Pollan recognizes that despite the momentum behind mainstream biomedicine interest in psychedelics, established clinical and regulatory frameworks pose daunting challenges for broad-based adoption anytime soon. That aside, Pollan argues for the use of psychedelics in situations that are not limited to health problems per se, but also for “the betterment of well people,” which was also an interest of early researchers. To Pollan, the betterment comes from the effect of psychedelics to expand consciousness. 
Most of the time, it is normal waking consciousness that best serves the interests of survival—and is not adaptive. But there are moments in the life of an individual or a community when the imaginative novelties proposed by altered states of consciousness introduce exactly the sort off variation that can send a life, or a culture, down a new path. (p. 407) 
His conclusion is that without the assistance of psychedelics, the vastness of the mind and the mysteries of the world can never be known. Psychedelics for everyone! 

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Annotated by:
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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