Speaking for the Dying: Life-and-Death Decisions in Intensive Care

University of Chicago Press
Free sample

Seven in ten Americans over the age of age of sixty who require medical decisions in the final days of their life lack the capacity to make them. For many of us, our biggest, life-and-death decisions—literally—will therefore be made by someone else. They will decide whether we live or die; between long life and quality of life; whether we receive heroic interventions in our final hours; and whether we die in a hospital or at home. They will determine whether our wishes are honored and choose between fidelity to our interests and what is best for themselves or others. Yet despite their critical role, we know remarkably little about how our loved ones decide for us.

Speaking for the Dying
tells their story, drawing on daily observations over more than two years in two intensive care units in a diverse urban hospital. From bedsides, hallways, and conference rooms, you will hear, in their own words, how physicians really talk to families and how they respond. You will see how decision makers are selected, the interventions they weigh in on, the information they seek and evaluate, the values and memories they draw on, the criteria they weigh, the outcomes they choose, the conflicts they become embroiled in, and the challenges they face. Observations also provide insight into why some decision makers authorize one aggressive intervention after the next while others do not—even on behalf of patients with similar problems and prospects. And they expose the limited role of advance directives in structuring the process decision makers follow or the outcomes that result.

Research has consistently found that choosing life or death for another is one of the most difficult decisions anyone can face, sometimes haunting families for decades. This book shines a bright light on a role few of us will escape and offers steps that patients and loved ones, health care providers, lawyers, and policymakers could undertake before it is too late.
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About the author

Susan P. Shapiro is a sociologist and research professor at the American Bar Foundation. She is the author, most recently, of Tangled Loyalties.
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Additional Information

Publisher
University of Chicago Press
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Published on
Jun 12, 2019
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Pages
368
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ISBN
9780226615882
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Language
English
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Genres
Law / Medical Law & Legislation
Medical / General
Medical / Geriatrics
Social Science / Gerontology
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Content Protection
This content is DRM protected.
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Available on Android devices
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Eligible for Family Library

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Every day, thousands of people quietly face decisions as agonizing as those made famous in the Terri Schiavo case. Throughout that controversy, all kinds of people--politicians, religious leaders, legal and medical experts--made emphatic statements about the facts and offered even more certain opinions about what should be done. To many, courts were either ordering Terri's death by starvation or vindicating her constitutional rights. Both sides called for simple answers. If That Ever Happens to Me details why these simple answers were not right for Terri Schiavo and why they are not right for end-of-life decisions today.

Lois Shepherd looks behind labels like "starvation," "care," or "medical treatment" to consider what care and feeding really mean, when feeding tubes might be removed, and why disability groups, the faithful, and even the dying themselves often suggest end-of-life solutions that they might later regret. For example, Shepherd cautions against living wills as a pat answer. She provides evidence that demanding letter-perfect documents can actually weaken, rather than bolster, patient choice.

The actions taken and decisions made during Terri Schiavo's final years will continue to have repercussions for thousands of others--those nearing death, their families, health-care professionals, attorneys, lawmakers, clergy, media, researchers, and ethicists. If That Ever Happens to Me is an excellent choice for anyone interested in end-of-life law, policy, and ethics--particularly readers seeking a deeper understanding of the issues raised by Terri Schiavo's case.

While surveys show that most of us would prefer to die at home, 80% of us will die in a health care facility, many hooked up to machines and faced with tough decisions. When you, a family member, or a friend are in this situation, what should you do next? In Embracing Our Mortality, Dr. Lawrence J. Schneiderman, a physician who is our leading expert on medical ethics at the end of life, urges all of us, including health care professionals caring for people at the end of life, to face these decisions with sensitivity and realism informed by both the latest medical evidence as well as the oldest humanistic visions. Dr. Schneiderman vividly demonstrates the wisdom of this approach by interweaving true stories of his patients, current empirical research in care at the end of life, displays of the power of empathy and imagination as embodied in the work of writers like Tolstoy and Chekov, and examples of how the distortion of medical research by media, and its misunderstanding even by health care professionals, cloud the ability to think, feel, and decide clearly about mortal concerns. He ends by addressing the question implicit in all of this which is how to achieve a just and universal health care. Dr. Schneiderman proves a refreshingly honest, astringent, and life-affirming guide to thinking about the choices that we or people we love will face when we dienot if, as the technological imperatives of modern medicine can suggestand to making decisions at the end of life that respect all that has preceded it.
NEW YORK TIMES BESTSELLER • A NEW YORK TIMES NOTABLE BOOK • America’s Bitter Pill is Steven Brill’s acclaimed book on how the Affordable Care Act, or Obamacare, was written, how it is being implemented, and, most important, how it is changing—and failing to change—the rampant abuses in the healthcare industry. It’s a fly-on-the-wall account of the titanic fight to pass a 961-page law aimed at fixing America’s largest, most dysfunctional industry. It’s a penetrating chronicle of how the profiteering that Brill first identified in his trailblazing Time magazine cover story continues, despite Obamacare. And it is the first complete, inside account of how President Obama persevered to push through the law, but then failed to deal with the staff incompetence and turf wars that crippled its implementation.
 
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“A tour de force . . . a comprehensive and suitably furious guide to the political landscape of American healthcare . . . persuasive, shocking.”—The New York Times
 
“An energetic, picaresque, narrative explanation of much of what has happened in the last seven years of health policy . . . [Brill] has pulled off something extraordinary.”—The New York Times Book Review
 
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“Superb . . . Brill has achieved the seemingly impossible—written an exciting book about the American health system.”—The New York Review of Books
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