Showing 11 - 20 of 870 annotations tagged with the keyword "Patient Experience"

Summary:

This is a gripping, informative, and well-researched book about human blood. An accomplished journalist, Rose George, covers a variety of topics, largely in the U.S., Britain, and Canada but also in Nepal, India, and South Africa. She describes many current issues, provides historical background, and speculates on future technologies, such as replacement of blood by other fluids. There are nine sections:

 “My Pint”  While the book’s title refers to the author's volume of blood, this chapter’s title refers to a single pint she is donating. We read about blood supply (donated and stored blood) in the U.S. and—by contrast—in India.

“The Most Singular and Valuable Reptile” refers to the leech. This arresting chapter describes both historical and  modern uses of leeches to gather blood from humans. She visits a company called Biopharm in Wales where leeches are raised and prepared for shipment to medical clinics and hospitals.  

 “Janet and Percy” is a historical chapter focusing on Dame Janet Maria Vaughan, a central figure in creating the Blood Transfusion Service in England during WWII and Percy Oliver, who guided its predecessor, the London Blood Transfusion Service.  

“Blood Borne.”  This chapter describes Khayelitsha, South Africa, “the ugly backside of Cape Town” (p. 100): a place of poverty, crime, rape, sexual predation, and HIV. While rich nations provide assessment and treatment for people with HIV, poor nations have many citizens infected with the virus and, over time, rising rates of infection. 

 “The Yellow Stuff” describes the plasma portion of blood; it can be frozen (as FFP) and used as a filler for bleeding or trauma patients. Unlike blood—which can only be given without payment—plasma can be collected from paid donors. It is a largely traded commodity, part of a multi-billion dollar industry worldwide. Plasma carries Factor VIII, a crucial protein for clotting blood; hemophiliacs lack this and are at risk for death by bleeding externally or internally. Some plasma has been tainted, for example by HIV.

“Rotting Pickles.”  In Western Nepal (and other places), menstruation is taboo. George writes, “We are in a minority among species, and among mammals, to bleed every month.” She reviews historical views of women’s periods, mostly negative. Worldwide, there are many taboos, but also some educational efforts for public health that are helpful in impoverished areas.  

 “Nasty Cloths.” This tells the unusual story of an Indian man named Muruga, “a poorly educated workshop helper” who became a leader in creating sanitary protection for menstruating women. Worldwide, the feminine hygiene industry is some $23 billion. George also reviews related history, including Toxic Shock Syndrome from tampons.  

 “Code Red.” Bleeding is often a fatal factor in trauma, even with the best efforts to transfuse blood into the patient, unit after unit. George observes open chest techniques at a resuscitation. She reviews breakthroughs in blood typing, component therapy, and “buddy transfusions.”  

“Blood like Guinness: The Future.” George starts with images from the past: vampires, human drinkers of blood, past and, even, present. She interviews a purveyor of the concept that “young blood” is healthier than older blood. Can there be, discovered or created, blood substitutes that also save lives? 

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Electricity

Fisher, Sukey; Higgins, Bryn

Last Updated: Jan-14-2019
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Lily O’Connor is 30 something and working at a seaside arcade in northeastern England. She inherits some money from her mother’s small estate and wants to give her brother Michael his share. But, Lily lost track of Michael during their childhood after they were placed in separate new homes to protect them from the severe abuse their mother was inflicting on them. Michael has become a ne’er-do-well in adulthood, and so Lily’s search for him takes her through the dark alleys of London and puts her in the company of its dodgier inhabitants. 

A bigger challenge to Lily in her search and in her life more generally is her epilepsy. How she experiences epilepsy forms the more interesting and dramatic elements of the story. We see Lily have several seizures  in a variety of scenarios: before a date, on the subway, at a friend’s house, in a hotel room, and in a nightclub. We see how Lily senses them coming on as she says to herself:

Here’s the breath, 
here’s the breeze, 
here’s the shimmer…and I’m falling down the rabbit hole.

We see the ground in front of her becoming fuzzy but closer, then what looks to be her hand reaching out in front of her to lay a sweater down on the ground where she thinks she will land, and then the ground getting fuzzier still as she hits it. From the ground, we see that she can still make out some people bending down to help and others averting their gazes. As Lily loses all focus, hallucinations start, and we see her body floating among patterns of electrical bursts as she experiences them. Next we hear her scream before all goes dark and violent shaking starts. As she regains consciousness, we see what she sees, blurry at first and then as her surroundings come into focus. It may be the inside of an ambulance, a hospital room, or her apartment, where in anticipation of that possibility, she has painted on her walls: Don’t Worry Lily Home Bed Sleep SAFE NOW

As Lily goes into recovery after a seizure, the director takes us from Lily’s point of view to the point of view of bystanders. We see that as a result of these seizures, Lily often sustains bone fractures, lacerations, abrasions, puncture wounds, and bruises among other injuries. She goes about cleaning herself up in a manner that suggests a routine, something she expects. Nevertheless, the loss of time frustrates her.

I just lost 2 days. Chop it up. Chop it out of my life. All the outtakes. What would they look like if you put them all together.

Lily’s adaptation to her seizures and their consequences vexes the physicians she consults, which she does only when her medications are stolen and she needs new prescriptions, and when she is taken to the hospital after particularly bad seizures. These physicians want to get Lily onto newer and presumably better medications. She resists, saying to one of them,

All I want is my old meds back.You know when my scripts change, it messes with my head every time. If you wanna know why I’ve stayed on the old meds, it’s ‘cause I know who I am…You have no idea how new drugs change me, they make me feel like a ghost. Words fall out of my mouth like vomit. My brain, a lump of cold meat. Nah, I’m not doing it.

She decides to forgo all medications if she must move to a new regimen, but it doesn’t go well. Eventually she capitulates, adapts to new medications, and goes on with her life, or as she says, “Thrash, get up, get on with it.”

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Summary:

In 2006, Emergency medicine trainee, Damon, and his wife, Trisha, have two boys, Thai (age 4) and Callum (age 2.5).  All is well in their lives until Callum begins vomiting for no apparent reason.  He is found to have medulloblastoma, an aggressive brain tumour, for which the only possible hope for a cure comes from surgery and six cycles of ever more arduous chemotherapy with stem cell recovery at Toronto’s Hospital for Sick Children. The little family moves to Toronto and commits to supporting Callum as best they can, ensuring that he is never alone even during his long weeks of reverse isolation. They also try to keep Thai nearby, involved and aware, with the help of a local school and grandparents. But Callum dies during the last cycle of treatment.  

Saddened, exhausted, and bereaved, Damon and Trisha go back to their home town and try to (re)construct their lives, slowly returning to studies and work. They find meaning in creating tangible and intangible memorials to their lost son, and they find purpose in the more difficult task of moving forward, never losing the pain of grief. They adopt a little girl. Damon knows that Callum is always with him and the experience of his illness and death has dramatically infused his work as a physician.

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Taking Care of Time

Davis, Cortney

Last Updated: Jan-02-2019
Annotated by:
Kohn, Martin

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

In this volume by the esteemed nurse-poet/writer, Cortney Davis, are 43 previously published poems (some revised for this collection), assembled in 3 sections-- the middle section featuring her long poem, "Becoming the Patient," that recounts through 10 shorter poems her time "in the hospital."

The poems in the surrounding sections describe in beautiful and intimate detail her patients' lives and the call to and practice of nursing. Featured throughout are battles won and lost-- with disease, with the medical staff, and as the title-- taking care of time-- suggests, the finitude we all face. No matter the difficulties of hospital life-- whether as practitioner or patient-- its familiarity  provides grounding and comfort in these poems as, for example, heard through the speaker of "First Night at the Cheap Hotel" who tells us:

"Being here is like being sick in a hospital ward
without the lovely, muffling glove of illness.
In hospital, I would be drowsy, drugged into a calm
that accepts the metal door's clang,
the heavy footfall right outside my door.
All these, proof of life,
and there would be a nurse too, holding my wrist,
counting and nodding, only a silhouette in the dark" (p.67)

And if sometimes the experiences and images become too hard to bear, the skillful nurse-poet can, as Cortney Davis does in "On-Call: Splenectomy," "tame them on page” (p.52).

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A Mind Unraveled: A Memoir

Eichenwald, Kurt

Last Updated: Jan-02-2019
Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Kurt Eichenwald shares his experiences living with epilepsy in an electrifying narrative. Beginning with staring spells as a child and then later on generalized convulsions with loss of consciousness, he experiences as many as 4 seizures a week between the ages of 18 to 30. After that, the seizures become milder and less frequent. Coincidentally, his wife, father, and older brother are physicians and his mother a nurse.

Eichenwald describes his encounters with multiple neurologists, the best of them being Dr. Naarden. Unfortunately, other health professionals are portrayed as incompetent, careless, lacking empathy, or even unscrupulous. Multiple mishaps with prescribed anticonvulsant medications are chronicled – drug side effects, toxic levels of medicines, and a bout of bone marrow suppression. He suffers broken ribs, cuts and wounds, burns, and is even blanketed by deep snow due to seizures.

Eichenwald acknowledges the toll that epilepsy exacts on roommates, friends, and family. He admits to lots of fear and guilt. At one point, he seriously considers suicide by overdosing. Everyday life is hardly ever ordinary: “Now I was scared every day, checking where I stood for dangers, wondering when consciousness would disappear” (p157). A large section of his account details the discrimination he encounters at Swarthmore College in Pennsylvania in the early 1980’s. The school dismisses him because of his uncontrolled epilepsy. He successfully fights their decision and returns to graduate. Obtaining and holding a job is complicated by his illness, but Eichenwald becomes a journalist who works for the New York Times.




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Summary:

Beth Macy has been a newspaper reporter in the Roanoke, Virginia area for three decades. In this book, she provides extensive reporting on the opioid crisis, how it developed and wreaked havoc in Appalachia, and how it grew into a national crisis across the United States.  

“Dopesick” is the colloquial term people who are addicted and addiction medicine specialists use to describe the constellation of wrenching and violent symptoms opioid withdrawal causes. As one of Macy’s subjects describes it:

You’re throwing up.You have diarrhea. You ache so bad and you’re so irritable that you can’t stand to be touched. Your legs shake so bad you can’t sleep. You’re as ill as one hornet could ever be. And believe me, you’ll do anything to make the pain go away.” (p. 41)
As a result, not long after a person is addicted to opioids, drug seeking behaviors are not motivated by the urge for the next and best high, but instead are driven “to avoid dopesickness at any cost” (p. 9). 

Macy divides her reporting into three major parts: 1) the ways Purdue Pharma fueled the explosion of opioid addiction beginning with the introduction of its product Oxycontin in 1996; 2) the ways in which people get addicted to opioids and how they get their supplies; and 3) the ways the U.S. health care system, criminal justice system, Congress, state legislatures, and regulatory agencies have failed in preventing and fixing the addiction crisis. 
 

As a journalist, Macy weaves the stories of individuals into the larger story of the opioid addiction crisis: people who became addicted to opioids and the effect it had on their families, and the stories of health care professionals who pulled alarms about the rapidly rising rate of opioid addiction and tried as best they could to treat addicted patients and protect the public. We read about the Purdue Pharma executives who were blamed and prosecuted for the marketing campaigns that turned localized opioid addiction patterns into a national opioid addiction epidemic. And we read about individual sheriffs, investigators, prosecutors, judges, and community activists who were trying to stem the tide of addition and death. These stories intersect throughout the book.

Embedded among the individual story lines are digressions Macy uses to elaborate on certain aspects of the opioid addiction crisis. She provides historical perspectives on drug addiction, and how this crisis differs from those of the past. She puts an emphasis on how trends in medical practice to liberalize the use of opioids in the management of all types of pain—minor and major, acute and chronic—converged with Purdue Pharma marketing campaigns for its proprietary opioid products. She cites statistics to show how fast the epidemic was worsening, how widely it was spreading across the United States, and how deadly it had become with mortality rates exceeding those of AIDs mortality at its peak. Other digressions cover how illicit opioid supply chains are created and maintained, and how different levels of governments reacted to the crisis. 

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This intelligent and compelling book invites us to evaluate the losses pertaining to “modern death” and to consider better ways—whether from the past or in the future—to care for the dying, their families, and all care-givers.   
            
Some chapters, such as “How Life (and Death) Were Prolonged,” are historical, describing changes in inoculations, living conditions, and medical care that extended the human life span but also changes in dying, now often prolonged by technology. Another chapter, “How We Learned Not to Resuscitate,” relates how CPR, initially lauded and popularized, is now widely understood as futile care, especially in older people. Warraich discusses various attempts to define death (brain-based, heart-based, American Bar Association, Harvard Criteria, Uniform Determination of Death Act, even NASA) and some of the issues that still remain. 
 

Other chapters are more physiological:  “How Cells Die” explains natural processes of cell death (necrosis, autophagy, and apoptosis). Most non-medical readers haven’t heard of these and perhaps some medical personnel as well. Unaware of them as regular and usual processes, we resolutely expect people to live some four-score and ten, perhaps even more. The next-to-last chapter, “When the Plug is Pulled” discusses “terminal sedation” (a legal dosage that eases pain but is not strictly speaking euthanasia or murder) and statutes that allow for assisted death and removal of life-sustaining machines. The Nancy Cruzan case and others illustrate many difficulties. (Cruzan was in a persistent vegetative state and supported by a feeding tube. A 1990 U.S. Supreme Court 5-4 decision allowed the removal of the tube.) Warraich argues further for “patients’ right to demand and acquire the means to end their suffering with the aid of a physician” (p. 263).              

Lack of resolution of these difficulties leads to problems for families of the dying and all medical personnel attending them, especially in ICU situations. Living wills are often of no help and “the end of life has become a battleground” (p. 211).
He argues that surrogate roles for decisions at the end of a life often do not represent what the patient actually wanted because the surrogate's values may be different from the patient's and family members may not reach agreement on decisions. He concludes, “All in all, overinvolved family and underinvolved doctors unsurprisingly make for a particularly caustic combo” (p.214).                      

In “When Death Transcends” we read that spiritual and religious matters are often ignored in medical settings. Such resources, however, “may be the only means that patients have of finding comfort” (p. 148). Warraich surveys various religions, including his own, Islam. This is one of the longest chapters in the book and carefully considers the wide range of faiths people have and the regrettable lack of training for doctors in this area.
           

Warraich concludes, “Death needs to be closer to home, preceded by lesser disability and less isolation” (p. 278). For deaths to be “truly modern,” we need to push past taboos and misunderstandings about death. 

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Sky the Oar

Nigliazzo, Stacy

Last Updated: Oct-16-2018
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

"Sky the Oar," Stacy Nigliazzo's second full-length poetry collection, contains 52 poems in four sections. These poems are gems--and gem-like, each poem has been created by a compression of words into unique forms.  Nigliazzo's poems wander along the page, floating in white space as margins move in and out. In the three "Triptych" poems, pages 36, 46, and 61, Nigliazzo uses an article written in 2015, the report of a woman's murder, as a pale background. By choosing words to highlight, the poet creates spare poems that emerge as commentary on this crime--"Triptych III" offers only 6 highlighted words (pages 61-62). Nigliazzo has abandoned the more common narrative form--long or short lines that tell a story--and instead gives the reader hints, sign posts along the way. These poems are not meant to be read quickly. It is only by pondering them, allowing the imagination and intellect to fill in, so to speak, the white space around the words, that the impact and complexity of these stunning, impressionistic poems becomes evident. 

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Summary:

Naomi Oreskes and Erik Conway examine the successful efforts of a few scientists to jam the spokes in the wheel of science, delaying needed mitigations (e.g., regulations) to protect individuals, vulnerable populations, nations, and the earth.

The authors chose the well-known and controversial debates around second hand tobacco smoke, acid rain, the strategic defense initiative, the ozone hole, global warming, and the pesticide DDT as the substrate for their investigation. Each issue involves a large accumulation of evidence of the dangers it presents to humans. And each provoked skepticism and opposition from related industries, contrarian scientists, and anti-regulation politicians and institutes. Industry opposes regulations that could threaten their businesses. Free market ideologists do not want regulations that could threaten capitalism and accelerate a slide into socialism. 

Faced with mounting scientific evidence and general agreement amongst credible researchers, those whose interests were threatened needed a strategy to win that didn’t rely on scientific evidence. The tobacco industry led the way by hiring “a public relations firm to challenge the scientific evidence that smoking could kill you,” (p. 15) and to ensure that “scientific doubts must remain.” (p. 16) The authors drew from publicly available documents to best convey this idea:

‘Doubt is our product,’ ran the infamous memo written by one tobacco industry executive in 1969, ‘since it is the best means of competing with the ‘body of fact’ that exists in the minds of the general public.’ (p. 34)

The industry realized, however, that renowned scientists would be needed “to merchandize doubt,” (p. 33) and so they recruited some. First among them was Frederick Seitz. He was a physicist who had been involved in the atomic bomb program during World War II and later in Cold War weapons programs. He knew next to nothing about the science showing the harm of tobacco smoke. However, his time as president of the National Academy of Sciences and as president of Rockefeller University accorded him credibility on all matters of science, at least to constituencies outside of science. His attacks on the science showing the harms of tobacco smoke had a lot to do with the decades it took before governments and the public took meaningful actions.

This became the approach opponents took against of science-based initiatives they wanted to scuttle. Seitz was recruited for other campaigns, but so were other physicists with similar backgrounds to form what Oreskes and Conway call a “small network of doubt mongers.” (p. 213) They make a point that this network only threw darts—poisonous darts—at the science they targeted and never once contributed their own original research to support their opposition to any scientific findings or consensus.

Oreskes and Conway tie the motives of these scientists primarily to their fierce devotion to liberty, which then meant fighting Communism and any other forms of socialism. They suggest that some degree of curmudgeonry and contrarianism is involved as well, but they focus more on political ideologies as the primary drivers for these people:

they were working to ‘secure the blessings of liberty’…if science was being used against those blessings—in ways that challenged the freedom of free enterprise—then they would fight it as they would fight any enemy. For indeed, science was starting to show that certain kinds of liberties are not sustainable—like the liberty to pollute.” (p. 238-239)

The authors hold the news media responsible for much of what the doubt mongers accomplished, specifically faulting them for applying the “fairness doctrine”—each side of an argument will get equal time—to the point of absurdity.

it especially does not make sense to dismiss the consensus of experts if the dissenter is superannuated, disgruntled, a habitual contrarian, or in the pay of a group with an obvious ideological agenda or vested political or economic interest. Or in some cases, all of the above. (p. 272-273)

The news media, they assert, are the gatekeepers and should be able to distinguish charlatans and snake oil salesmen from legitimate scientists. In this role, they failed as far at the authors are concerned. There can be no network of doubt mongers without a news media that either can’t or won’t call them out.

In contrast, the authors give the scientists who didn’t call out the doubt mongers a more forgiving critique. For the most part, they say, scientists facing a fight will retreat to their labs and concentrate on their work—they’re discovers, not fighters. On them, “intimidation works.” (p. 265)

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Summary:

Barbara Ehrenreich wants to manage her health and all that is available to address various aspects of it. She makes clear that she will do the managing and has written this book to reflect on how she plans to do it.  Ehrenreich explains why managing her health is necessary. She puts it this way:

We would all like to live longer and healthier lives; the question is how much of our lives should be devoted to this project, when we all, or at least most of us, have other, often more consequential things to do (p. xv)  

Ehrenreich doesn’t reject the project of getting longer and healthier lives per se, but she believes that what this project requires isn’t always worth the results it produces. The time and energy needed could be put towards better ends.  

Like many other critics, Ehrenreich details how Biomedicine often comes up short on outcomes for all the time, effort, and money it requires from the people it serves. She covers the familiar territories of over diagnosis and over utilization of health care products and services, and goes further to suggest that many common medical practices are more ritualistic and humiliating than evidence-based and effective.

Unlike other critics, Ehrenreich takes on other activities directed at health outside of Biomedicine. She questions whether the physical fitness industry delivers on its promises to produce healthier lives and especially whether there is a net benefit based on the time and energy required from people who take it on. She crosses to the other side of the mind-body continuum when she next aims at the “madness of mindfulness” (p. 71).  She finds the mindfulness movement offers more hubris than solutions.  

Ehrenreich worries that the combined effects of the authority of Biomedicine, the physical fitness frenzy, and the madness of mindfulness have created a social context that treats death as something that can be avoided or at least delayed. This social context thereby implies that not actively engaging in efforts to fight off death “can now be understood as a suicide” (p. 97).

Ehrenreich offers some reasons for why these efforts to improve health and prolong life do not always produce benefits that in her view are worth pursuing to the exclusion of other activities resulting in a better life (or death). Drawing on examples from cell biology and immunology, she suggests that what is at work are disease processes too complex for the human mind to apprehend completely combined with the human impulse to  simplify, which lead to practices, procedures, and prescriptions that in the best case are ineffective and in the worst case harmful.   

At the end of the book, Ehrenreich laments the efforts health care professionals, nonprofit organizations, government agencies, and commercial entities make to push older people into commitments for “successful aging.” Those making these efforts argue “aging itself is abnormal and unacceptable” (p. 164).  This commitment requires older people to spend a lot of time in clinics, gyms, and wellness classes—“The price of survival is endless toil,” is how Ehrenreich formulates it (p. 163).  She doesn’t think this price is worth what is required of people who are supposed to benefit, and advises her friends to insist “on a nonmedical death, without the torment of heroic interventions to prolong life by a few hours or days” (p. 208).

I continue to elude unnecessary medical attention and still doggedly push myself in the gym, where, if I am no longer a star, I am at least a fixture. In addition, I retain a daily regimen of stretching, some of which might qualify as yoga. Other than that, I pretty much eat what I want and indulge my vices, from butter to wine. Life is too short to forgo these pleasures, and would be far too long without them (p. 207).

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