Last Rights: Rescuing the End of Life from the Medical System - Hardcover

Kiernan, Stephen P.

Hardcover

ISBN 10: 0312342241 ISBN 13: 9780312342241

Publisher: St. Martin's Press, 2006

Synopsis

“This country is fairly crowded with doctors, families, and patients—all possessed of good intentions—failing to achieve the simple goal of allowing people to die with dignity and grace.”
In the 1970s, most Americans died swiftly and brutally: of heart attacks, strokes, cancer, or in accidents. But in the past three decades, medical advances have extended our lives and changed the way we die. In Last Rights, Stephen Kiernan reveals the disconnect between how patients want to live the end of life—pain free, functioning mentally and physically, surrounded by family and friends—and how the medical system continues to treat the dying—with extreme interventions, at immense cost, and with little regard to pain, human comforts, or even the stated wishes of patients and families.

Backed with surveys, interviews, and intimate portraits of people from all walks of life, from the dying and their families to the doctors and nurses who care for them, this book will be for our time what Elizabeth Kubler-Ross’s books were for a previous generation.

About this title

About the Author

STEPHEN KIERNAN is a writer and journalist for the Burlington Free Press. His numerous awards include the Gerald Loeb Award for Financial Journalism, the Associated Press Managing Editors' Freedom of Information Award, and the George Polk Award. He lives in Charlotte, Vermont.

From the Inside Flap

Half of people who die in hospitals today suffer severe untreated pain.
Residents were abused in one-third of U.S. nursing homes in 2003.
Health expenses are the nation s leading cause of personal bankruptcy.
Only six U.S. medical schools require students to take a course on care of the dying.

These are just a few of the incredible findings award-winning journalist Stephen P. Kiernan reveals in Last Rights, an exposé of America s substandard care of people who are dying. Recent medical advances have dramatically reduced sudden causes of death like heart attacks, strokes, and accidents. Today people s lives end slowly, giving them an unprecedented opportunity for meaningful closure---free of pain, among loved ones, with their affairs in order and spiritual calm attained.

Instead, most Americans discover that their doctor has minimal training in providing the care they need, and will seek to extend life no matter how painful, expensive, and futile that effort might be. Patients and families watch as their wishes are ignored. They experience a nightmare of hospitals, specialists, high-tech treatments, and helplessness dealing with a medical system that means well but does not listen.

It doesn t have to be that way. In Last Rights, Kiernan tells the stories of people who died after enduring avoidable pain and needless indignities. More important, he shares the stories of people whose last days were pain free, who lived life fully right to the last moment. Above all, he shows how patients and families can regain control of the dying process, creating familial intimacy like never before.

Bolstered by both scientific research and intimate portraits of people from all walks of life, Last Rights offers a hopeful, profound vision for patients, doctors, and families: a way to honor people during their greatest vulnerability, a chance for families to reconnect, an opportunity for the medical system to treat patients with ultimate respect, a time to give comfort and compassion to those we most love.

Stephen P. Kiernan has written for The Boston Globe and other publications, and for fourteen years wrote for the Burlington Free Press as a columnist, editorial writer, and investigative reporter. He received the George Polk Award for medical reporting, the Joseph Brechner Center s Freedom of Information Award, and has been a two-time finalist for the Gerald Loeb Award for Financial Journalism. Kiernan lives with his two sons in Vermont. Visit www.stephenpkiernan.com.

Reviews

*Starred Review* Anyone who has stood helplessly by as physicians insisted that a battery of tests and interventions could prolong the life of a loved one, only to see those expensive efforts fail, is certain to be moved by Kiernan's presentation. While his assertion that the American way of dying has changed only during the last 30 years may be debatable, there is no question that the process of dying has undergone a radical makeover. It has become, too often, a parade of last-ditch, state-of-the-art medical interventions, to the direct detriment of the dying person and his or her family and friends. Those who have a terminal illness, Kiernan says, deserve to die quietly, in their own homes, surrounded by loved ones and as pain-free as possible. He makes it sound simple enough, and a lot cheaper than the currently popular, if futile, pricey hospital heroics that prolong little more than misery. The problem is that American medical schools devote more time to teaching students about diseases not even found in the U.S. than to preparing them to work with terminal patients. Doctors, therefore, are ill equipped in every way to accompany a patient down the path to a serene death. A nice polemic, even without practical advice on assuring one's own peaceful demise. Donna Chavez
Copyright © American Library Association. All rights reserved

Excerpt. © Reprinted by permission. All rights reserved.

Chapter One 

Last Hours
 
On the final night of his life, Jack happened to glance out the window just before eleven and notice that it was snowing: fat flakes cascading past the porch light, changing direction in a puff of wind like a school of fish veering from a predator.
 
Had Jack known what lay ahead, the seven hours left to him, he might have done something other than turn back to the television. He might have reached for the phone and called his daughter, a college freshman, to send her his love and let her tap him for spending money one last time. He might have climbed the stairs to his son's room, interrupting that bookish boy's latest fascination for a discussion of how to help his mother weather widowhood. Jack might have gone to his wife, already in bed, to plan for life without him or remind her where his will was stored or revisit their fondest memories like jewelers scrutinizing rubies. He might simply have decided to go to the window, to watch the snow and contemplate the infinite.
 
Instead, Jack plunged his hand into a bag of potato chips, washed a mouthful down with the warm dregs of a beer, and watched the Celtics lose in overtime. He lit a cigarette, an unfiltered Camel--he reasoned that if you're going to smoke, you might as well taste it. Though he'd never seen the Celtics play in person, in the morning his loyalty would cost him both five bucks and a razzing from Bo, a coworker buddy who favored the Lakers.
 
It was December 1, 1976, a Monday, and too early for snow. Jack switched off the TV, crushed out his smoke. With a beefy forearm he gathered the empties against his stomach and shuffled into the kitchen.
 
After shoving everything into the trash, Jack went back through the house dousing lights. He moved slowly, aware that lately the furniture crowded him because he'd put on so much weight. Always a hefty guy, Jack now had a bona fide belly, a smoker's cough he hacked through some mornings, a general sluggishness in his blood. He would have gone to a doctor, but why bother when you already know what the problem is? You're getting older, fifty-six in April, and the beer and the sweet tooth and the butts and the lack of exercise have a bigger effect now than when you were twenty-six. Jack put a hand on his lower back as he bent down to turn off a table lamp. Yes, he should cut down. And exercise. Definitely quit the Camels, God forbid. But a man cannot be disciplined about everything. A man who has worked hard all his life also deserves some pleasures, doesn't he?
 
This line of thinking was so familiar that it was nearly furniture, too. Room by room, Jack flicked switches and left darkness behind him. At the top of the stairs he paused, dimly aware of his heart laboring but also hesitant. Was he forgetting something?
 
Of course he was. Jack was experiencing many of his life's last sensations and emotions. Yet he did not know. He did not pause to savor, to think: this is the taste of warm beer, bitter yet pleasant; this is the holy hush of snow falling; this is the unique sibilance of an empty potato chip bag being crushed into the trash.
 
Instead, there would be no last words, no consummate gesture, no muttered prayer. Jack did not know that this was his one opportunity to say good-bye.
 
He glanced into his son's room, but the boy was reading and Jack did not interrupt. He passed his daughter's room, missed her a moment, then went into the bathroom to brush his teeth.
 
"It's snowing," Jack called through the open door to his wife. "Really coming down."
 
But when he entered the bedroom Jack saw that she was already asleep. A novel lay open on her lap. He placed the book on the bedside table facedown but still open, so as not to lose her place. It was a little gesture, miniscule really. But she would notice it when she moved the novel again the following night, putting it away on a shelf--she would set aside all reading for many months. At that moment twenty-four hours later, her world having changed utterly, Jack's care over so small a thing would touch her in a deep and previously unknown place. For now, though, she dozed.
 
Jack climbed into bed and shut off the light. Six hours left. Did his mind, then, turn over the lessons of his life? Did Jack's soul ache at all he was about to lose, so that he reached for his wife and sought the comfort of one last embrace? Did he fear what might come after death--a reckoning perhaps, or bliss, or nothing at all?
 
No, Jack remembered that the mortgage was due on the third, Wednesday, and he would have to drop off the check on the way to work to avoid paying the late fee.
 
He shifted his pillow. Lately he'd been folding it over to raise his head while he slept. It helped him breathe, and his wife said he snored less. Jack felt a mild indigestion, that December Monday nearing midnight, but he ignored it and the sensation soon passed.
 
Then there was only the dark, the quiet house, and in time, dreams. Even on the cusp of ceasing to exist, there are dreams.
 
 
The alarm buzzed in darkness and Jack slapped it off: 5:45 a.m. Forty minutes left. Out the window he saw six inches of fresh snow.
 
Jack was born on April 8. He and his wife celebrated their August 1 anniversary twenty-nine times. He observed holidays and remembered Mother's Days and kids' birthdays and anniversaries of starting jobs. Jack oriented the compass of time with meaningful dates throughout the year. Yet never had he given a moment's thought to his life's fifty-five unremarkable December 2s. Jack's family will remember, though. His son will note the date solemnly every year, honoring his father while in turn ignoring the May 25 that waits with cold patience for him.
 
Down in the kitchen Jack lit a cigarette, squinting against its smoke as he dug through the hall closet for his boots and parka. A slug of coffee, and out he shuffled into the gray morning. Grabbing a snow shovel, Jack started at the garage and worked his way back. The first few pulls tightened his shoulders. The stuff was heavy. Upstairs the bathroom light went on, meaning his wife was awake, and he began to hurry.
 
Jack was halfway home when he felt one of his smoking coughs coming on. He straightened, trying to deep-breathe it away. But the air felt as though it went somewhere other than into his lungs, down into his left arm somehow. And when he exhaled, in the place where the breath had been there was a powerful ache. Jack frowned at his arm as if it belonged to someone else. The pain intensified. He leaned the shovel against himself and rubbed his shoulder. How could so small an exertion hurt so much?
 
A sledgehammer of pain struck Jack in the chest. His body seemed to fold around it. He clutched the shovel for balance, as if staying upright were the most important thing imaginable. Then Jack's knees buckled, slamming his face down on the shovel's handle and giving him an instant nosebleed. He leaned to the right, curling around the massive stab in his core. The snow, with an arc of red from his nose, cushioned his fall.
 
Whatever was happening, Jack thought, it was going to take over the day. The mortgage payment would definitely be late. Already the world was developing a vagueness. The cold against his cheek, the tightness in his lungs--they grew distant. The early daylight in some kind of ebb. Even the pain became strangely remote.
 
Jack's eyes roved, and he thought to ask: "Anyone?"
 
Minutes later his wife, humming along with the radio, glanced out the bathroom window. She saw Jack's form, prone amid a spray of red. She screamed and screamed.
 
 
What is the imprint a body makes when it falls? Later that morning, when Jack was lifted from where he lay, with all the care that experts in that grim line of work can provide while nearby a stricken wife and son watch, the outline he left was no snow angel. No, if you take a man in a loose parka and tip him sideways with a shovel in his hand, the shape that remains is strange but familiar: a human form, hooded and cloaked, and in his merciless grip the tool that spares no one, the scythe.
 
Copyright 2006 by Stephen P. Kiernan. All rights reserved.

Edition details

• Publisher: St. Martin's Press
• Publication date: 2006
• Language: English
• ISBN 10: 0312342241
• ISBN 13: 9780312342241
• Binding: Hardcover
• Edition number: 1
• Number of pages: 320