Showing 1 - 10 of 16 annotations in the genre "Investigative Journalism"
Summary:The future of healthcare in the US has long been a subject of debate, with how to pay for it overshadowing other aspects of the topic. In publishing this work, the author, Dr. Ezekiel Emanuel, makes clear: “This book is about [the] transformation in the delivery of care in the United States” needed to ensure that “all Americans receive consistently higher-quality and lower-cost care.” (p. 15) Paying for health care is not ignored, and indeed how health care payment methods figure in health care delivery is taken into account.
Summary:Soldier Girls is an exhaustively researched, intimate report by a journalist of the lives and deployments of three women in the Indiana National Guard, who, through serving together in Afghanistan, become friends. Each of the women joined the Guard prior to 9/11/2001, mostly for economic reasons. Thorpe selected women who were vastly different in age and background. Debbie Helton becomes a grandmother during deployment and has served in the guard for decades - she is eager to be deployed. Michelle Fischer (a pseudonym) is newly out of high school, has liberal political views and sees the Guard as a way to pay college tuition. Desma Brooks is a single mother of three with a fractured and unreliable support system. All three have alcohol and or drug dependency issues. Brooks and Helton are deployed a second time - to Iraq.
Five Days at Memorial is the book length expansion of the New York Times Sunday Magazine article that the author, a Pulitzer Prize-winning physician-journalist, published in 2009. The book, the result of years of research and literally hundreds of interviews, chronicles the five days (August 28 to September 1, 2005) during which the medical staff remaining at Memorial Hospital in New Orleans tried to care for the patients -- over a hundred of them stranded, like the staff, in a hospital without water or electricity --following the flooding wrought by Hurricane Katrina.
After an 8 page prologue, the book is divided into two sections, "Deadly Choices" (228pp, the narrative of those five days) and "Reckoning" (256pp, the legal battles over the injections of midazolam (a sedative) and morphine by some of those staff and prosecuted as homicide -- what others called "euthanasia.") "Deadly Choices" relates almost hourly the five days inside Memorial from the viewpoint of patients, patients' relatives, physicians, nurses, administrators of Memorial, Tenet (the holding company owning and running Memorial) and LifeCare -- the long-term care area within Memorial devoted to the care of terminally ill and debilitated patients -- owned by a separate company. Ethical and legal questions of triage, DNR, record-keeping, accountability, communication (primarily the failure thereof) and leadership are on almost every page. At the heart of this book, however, is the mystery of the unexplained deaths of so many patients during those five days. (On September 11, 2005, a disaster mortuary team recovered 45 bodies from many different places in Memorial, page 234). The crux of the mystery of these deaths is the manner in which nine in particular died in the beleaguered hospital on the fifth and last day when, paradoxically, relief had become real and effective and inclusive, seemingly obviating such injections.
The final pages of "Reckoning" deal with the fallout - historical, ethical, political and medical -- and current events relevant to these five days and the almost two years following. (The final verdict of not guilty -- the actual wording was "Not a true bill" since it was a grand jury declining to indict the one physician, Anna Pou, and the two nurses, Cheri Landry and Lori Budo -- was rendered on July 24, 2007). There are a map of Memorial Hospital and a cast of characters at the front of the book and extensive notes, bibliography and index at the end.
When Lia Lee's sister slammed the front door to their Merced, California, apartment, Lia experienced her first in several years of increasingly severe seizures. The Lee family knew that the noise had awakened a dab, an evil spirit who stole Lia's soul. They also knew, in the midst of their grief for their infant daughter, that people suffering from "the spirit catches you and you fall down" often grew up to be healers in their Hmong culture.
Not surprisingly, the physicians and other health professionals who worked with Lia and her parents over the next seven-plus years did not share this diagnosis--most of them did not even know about it. Fadiman melds her story of Lia, the Lees, the family's physicians and social workers, and countless other people who enter the Lees' life (usually uninvited and unwelcome) with the long history of the Hmong people, their religion and culture, and their more recent lives as refugees from war in Laos and Cambodia (and the troubled history of their relationship to the U.S. military system).
In 1951 when Henrietta Lacks was dying of cancer in the colored ward of Johns Hopkins, cancer cells taken from her without her knowledge "became the first immortal human cells grown in a laboratory"(4). Known as HeLa cells, they are still reproducing today and are used world wide in research for cancer, cloning, genetics, Parkinsons, and many technologies. Henrietta's family did not know she was the source of these immortal cells until scientists began testing the family members too. Poor and black, they were very angry to find the white establishment had made fortunes using HeLa cells while the family got nothing for it and couldn't even get good health care. In her thorough and careful investigation, Rebecca Skloot interviewed the Lacks family; scientists, doctors, and others who worked with HeLa cells; historians; journalists; ethicists. This book traces the complex stages of her search for the truth about what happened to Henrietta Lacks, her HeLa cells, and her family.
The author, who writes and teaches nonfiction writing, began research on the lawsuit that forms the fascinating subject of this book in February, 1986. While the book focuses on Jan Schlichtman, the lawyer for the plaintiffs, and on his strategy in the case, there is much here that is relevant for health care professionals.
The lawsuit, which lasted nine years, concerned the tragic consequences of exposure to toxic waste: deaths from childhood leukemia; skin rashes, nausea, burning eyes, and other ailments. It was brought by eight families who lived in Woburn, Massachusetts against two companies, W. R. Grace and Beatrice Foods. The lawsuit claimed that these companies were liable for illnesses and deaths attributable to trichloroethylene (TCE) contamination of the water supply.
The story of how the families and the lawyers pieced together the fragments of the puzzle to determine cause and effect is gripping. One gains an appreciation for environmental epidemiology and the difficulty of reaching conclusions when only a small number of individuals are affected. Medical experts, public health specialists, geologists, civil engineers, government agencies, and the intelligence and driving motivation of the affected families and their lawyers were all necessary to establish the credibility of the claim.
In the end, however, the financial power and stonewalling of the companies, and the partiality of the presiding judge for one of the defense lawyers resulted in a verdict that favored the defense. Jan Schlichtman, the plaintiff's lawyer, was forced to declare bankruptcy.
Only when the Environmental Protection Agency (EPA) decided to launch a clean-up and filed suit against W. R. Grace and Beatrice Foods to pay a share of the cost, was any semblance of justice obtained. The EPA project will take 50 years, and even so, "all parties agree that it will prove impossible to rid the site of TCE and perc [tetrachloroethylene] completely . . . . " (Afterword; p. 494) Nevertheless, most of the families have not moved.
Summary:This story follows John and Aileen Crowley and their three children, the two youngest of whom have a rare "untreatable" genetic disease. Pompe disease gradually degenerates muscle until patients cannot breathe or sit up; it also dangerously enlarges the heart. Determined to try to save his children, John Crowley started up a biotech company to develop an enzyme that would replace the non-functioninging one in his children. Others researchers in other companies were trying different approaches. Everyone made mistakes and created problems along the way.
Summary:Obsessed with the history of presidential assassinations and captivated by the power of places and objects to evoke the past, the author writes about her travels to the sites commemorating the lives, illnesses, deaths, and burials of Presidents Lincoln, Garfield, and McKinley and of their murderers. The greatest attention is given to Lincoln.
When Jamie Heywood, the eldest of three brothers in a tight New England family of engineers, learns that his middle brother Stephen (they all are in their 20’s at the outset of this drama which begins, for them, in early 1998) has amyotrophic lateral sclerosis (ALS), he has just assumed the position of entrepreneur in technology transfer at Gerald Edelman’s Neurosciences Institute, the prestigious think tank of the 1972 Nobel Laureate in Physiology and Medicine, in La Jolla, California.
Jamie quickly announces his resignation and simultaneously his decision to devote his life to helping his brother in the only way he can--as manager, CEO, COO and staff of, initially, a loosely organized team effort to develop a cure for ALS, an insidious wasting disease of the nervous system that progressively leaves the person with the merest remnants of voluntary motor function.
Jamie’s resignation and his move from the West to East coast is but the mildest of changes in the weather for what becomes a perfect storm of technology recruiting, fund-raising, career-rebuilding and the emotional equivalents of El Niño, profoundly affecting at least four families, three of them Heywoods: Stephen Heywood, the strapping carpenter/house-restorer with ALS, and his wife, Wendy; Jamie, and Melinda, his belly-dancing wife with a PhD in medieval French literature; the brothers’ mother, Peggy, and father, John; and, lastly, the author and his father, Jerome, and mother, Ponnie (a Polish diminutive).
Concomitant with Stephen’s development of ALS, Ponnie begins to evidence the dementia of Steele-Richardson-Olszewski syndrome, also known as progressive supranuclear palsy, a form of brain decay uncannily similar to ALS. (Fortunately for the Heywoods, ALS involves only the motor nerves, not the cognitive apparatus.)
The author’s decision to include his family’s ordeal is wise, generous and instructive. The Heywoods and Weiners are both engineering families with an academic engineer as the pater familias and both are trying their best to cope with a deteriorating illness that dismantles the center of all cerebral engineering activity, the brain. The comparison of the diseases and the responses of all the players involved are culturally and psychologically dissected with the author’s trademark precision and kindness. But this book, as the title indicates, is more about the keeper than the brother.
Within minutes of his learning of Stephen’s diagnosis, Jamie becomes a man possessed. He moves quickly, as though by intuition and almost a fated skill, from technology transfer to technology-bricolage; genetic therapy on the fly; and people-, funding- and support-transfer. In fact, when there is no transfer involved, Jamie creates in order to transfer.
Like Gregor Samsa, in the short story by Franz Kafk, from whom Weiner also deftly borrows another parable, "An Imperial Message," (to illustrate, metaphorically, the pathophysiology of ALS as a disease in which neural messages, like the Imperial Message, go awry), Jamie undergoes a metamorphosis, albeit admittedly much less drastic than Gregor’s. He molts his undergraduate degree in engineering at MIT to emerge as a self-appointed manager of any and all ALS research and gene therapy in the U.S. that might help retard the progress of his brother’s illness.
Recruiting, petitioning, nourishing, cajoling, funding, and courting researchers and clinicians alike, Jamie meets, entertains, enlists and co-ordinates the efforts of gene therapy researchers and other medical scientists. He becomes a fund-raiser with the help of Melinda and her family of belly dancers, raising $240,000 as a result of the First Annual Belly Dance Extravaganza. His efforts involve the Heywood and Weiner family members, as epicentric waves of activity inevitably affect them all.
We watch, through Weiner’s eyes (and the diaries of Wendy and Melinda, whom he cites with permission), as the four families experience the predictable mood shifts that accompany a devastating illness and the great adventure of a risky attempt to work a miracle (a miracle that Jerome E. Groopman grumpily and stuffily bemoans in a cited Wall Street Journal editorial): excitement when a genetically engineered ALS mouse outlives its cohorts and money starts to flow; and disillusionment, when Stephen’s disease relentlessly progresses, Jamie’s marriage dissolves for a lack of boundaries, as Melinda, Jamie’s wife, records in her diary, and the author’s mother slips deeper into a dementia that Lucretius, Weiner’s authorial inspiration of the book, would easily recognize as part of the world explored in his famous treatise De Rerum Natura.
By the end of the book, there is an air of exhaustion yet surprising calm--perhaps the calm after the storm--as we witness the normalcy of Stephen, in his motorized wheelchair, playing with his son. As Stephen repeatedly affirms to Weiner, now a family friend and no longer merely a reporter, "I’m fine."
Summary:A Place Called Canterbury by social historian Dudley Clendinen, former New York Times national correspondent and editorial writer, provides readers with an intimate and revealing account of aging in a particular place at a particular time--Canterbury Tower in Tampa, Florida. The story about the author's mother, Bobbie--and so many others--begins in 1994, a few years after the death of James Clendinen, Bobbie's husband of 48 years, and known to the community as the progressive editor of the Tampa Tribune. Although she had been "falling apart, a piece here, a piece there...collapsing vertebrae...bent, frail, and crooked...subject to spells and little strokes...." (p. xii),