Freedom to Die: People, Politics, and the Right-to-Die Movement

Freedom to Die: People, Politics, and the Right-to-Die Movement

by Derek Humphrey, Mary Clement

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Overview

The strength of the right-to-die movement was underscored as early as 1991, when Derek Humphry published Final Exit, the movement's call to arms that inspired literally hundreds of thousands of Americans who wished to understand the concepts of assisted suicide and the right to die with dignity. Now Humphry has joined forces with attorney Mary Clement to write Freedom to Die, which places this civil rights story within the framework of American social history. More than a chronology of the movement, this book explores the inner motivations of an entire society. Reaching back to the years just after World War II, Freedom to Die explores the roots of the movement and answers the question: Why now, at the end of the twentieth century, has the right-to-die movement become part of the mainstream debate? In a reasoned voice, which stands out dramatically amid the vituperative clamoring of the religious right, the authors examine the potential dangers of assisted suicide - suggesting ways to avert the negative consequences of legalization - even as they argue why it should be legalized.

Product Details

ISBN-13: 9781429929660
Publisher: St. Martin''s Publishing Group
Publication date: 04/17/2000
Sold by: Macmillan
Format: NOOK Book
Pages: 384
File size: 547 KB

About the Author

Derek Humphry is a journalist and author who has spent more than thirty years campaigning for lawful physician-assisted dying to be an option for the terminally and hopelessly ill. He started this campaign in 1975 after the death of his first wife, Jean, from bone cancer which had become so painful and distressing that she took her own life with his help.

Born on April 29, 1930, in Bath, England, of a British father and an Irish mother, he was raised on the Mendip Hills in Somerset. His education was slender because of a broken home followed by the 1939-45 war when most English schools were in chaos. He attended perhaps a dozen different schools, leaving at age 15 to pursue a career in journalism.

Mary Clement is an attorney and president of Gentle Closure, Inc., a company that addresses all end-of-life concerns. She is coauthor, with Derek Humphry, of Freedom to Die.


Derek Humphry is a journalist and author who has spent more than thirty years campaigning for lawful physician-assisted dying to be an option for the terminally and hopelessly ill. He started this campaign in 1975 after the death of his first wife, Jean, from bone cancer which had become so painful and distressing that she took her own life with his help.

Born on April 29, 1930, in Bath, England, of a British father and an Irish mother, he was raised on the Mendip Hills in Somerset. His education was slender because of a broken home followed by the 1939-45 war when most English schools were in chaos. He attended perhaps a dozen different schools, leaving at age 15 to pursue a career in journalism

Read an Excerpt

Freedom to Die

People, Politics, and the Right-to-Die Movement


By Derek Humphry, Mary Clement

St. Martin's Press

Copyright © 2000 Derek Humphry and Mary Clement
All rights reserved.
ISBN: 978-1-4299-2966-0



CHAPTER 1

Medical Technology's Onslaught


Public interest is the lever that activates the government and other institutions to formulate public policy. Members of the community, from block associations to the U.S. electorate, raise issues and express preferences by the election of officials, by initiatives and referendums, and by the determination of special-interest-group activity. The government, in response to its constituents, provides public policy. Other institutions modify or change their official policy as public pressure dictates.

The right-to-die has become a matter of immense public interest and concern. What began as minimal interest in the 1930s, escalated in the 1970s with the plight of Karen Ann Quinlan, and continued with the California and Washington referendums — followed by the Oregon initiative — has culminated at the end of the twentieth century in the U.S. Supreme Court's deciding the constitutionality of a mentally competent terminally ill adult's right to determine, with the aid of a physician, the time and manner of his or her death.

The Supreme Court addresses a divisive social issue only when that issue has generated enough interest, intensity, and conflict over an adequate period of time to demand some kind of legal resolution. The Court seldom seeks the authoritative role on a red-hot social issue such as PAS. Quite the contrary, it generally tries to avoid it. Public interest, however, pressured the Court to consider this controversial social issue. As it turned out, the Court left the matter to the states, but its very consideration of the issue signals that PAS has become part of a mainstream debate. However, far from establishing what might be called "A Policy for the Right-to-Die Movement," the Oregon initiative and the Supreme Court ruling add more pieces to the jigsaw puzzle of the ongoing struggle. The individual states will decide whether PAS will be allowed, and they will formulate public policy based on public demand.

Public interest and policy do not appear and grow in a vacuum. Right-to-die policy is developing as the result of the "'policy forces' of restraint, activism, and mediation: pressures and stresses that push, pull, and shape policy into one form or another." This approach allows us to understand right-to-die policy, in the United States at the end of the twentieth century, as the result of the forces of activism overwhelming the forces of restraint, forcing the government to act.

These forces of activism have compelled the culture of medicine, the economics of health care, state and federal courts, and legislatures in all fifty states to deal with the right-to-die. Forces of restraint are also at work, and have until recently kept PAS submerged as an issue of extensive public discussion. Though the forces of activism overcame the forces of restraint on the issue of forgoing life-sustaining treatment, the struggle against PAS continues. Institutions with a vested interest in maintaining the status quo attempt to hold the line against change. Political scientist James Hoefler says these same "forces of restraint are strong enough to limit the scope of right-to-die policy and slow its development," even as they lose to popular opinion.

What are these forces of activism that drive public support of assisted death, that are responsible for raising public awareness of the suffering patient who lacks all hope of ever regaining a meaningful quality of life? Why does one Gallup poll show that 75 percent of Americans believe doctors should be allowed to end the lives of terminally ill patients by painless means if the patients request it? Why do an even higher 78 percent of adults believe that PAS should be legalized by the federal government? Why are newspapers across the country now endorsing the practice in their editorial pages? Why did Oregonians ignore intense pressure from establishment forces and vote in favor of assisted death? What has happened in our culture that the two largest and most influential courts of appeals have ruled, in effect, that laws dating back to the nineteenth century, prohibiting assisted suicide, need no longer pertain to late-twentieth-century Americans? What do Americans know now that they did not know before? Again, Why Now?

A number of factors have brought society to the point where a majority favors the voluntary termination of life to avoid unrelenting pain and suffering. Dramatic advances in technology since World War II, the rise of AIDS as a national plague, the decline of the doctor-patient relationship, the economics of health care, and the medical profession's lax attitude toward pain control and comfort care, combined with the expectations of entitlement and autonomy generated by the "rights culture" of the 1960s, all give rise to the expectation of a quality death with personal input. The right-to-die movement is consistent, furthermore, with the baby boomers' increasingly influential creed: "I want what I want when I want it, especially if it will make me feel better."

It is incontrovertible that fear of dying in the cold, impersonal clutches of modern medical technology has given a major boost to public acceptance of a hastened death. Technology has pushed the assisted-death issue to the forefront. Americans are uneasy about the cost and the impersonal technological arrogance of modern medical care, and they fear a prolonged death that diminishes their dignity and burdens their loved ones. Technology creates scenarios that raise questions about the dying process.

Henry R. Glick, professor of political science and research associate at the Institute on Aging at Florida State University, sees no end to medical innovation and the power of doctors and new machines to prolong life — and the resulting liabilities for the elderly and the seriously ill. "Changes in the technology and the practice of medicine, coupled with traditional medical training and ethics that champion conquering disease and preserving life, and doctors' fears of liability for discontinuing treatment have all created a specter of a lingering death for many terminally ill or comatose patients and the growing elderly population," says Glick. "Modern medical tools are valued lifesavers for accident victims and those suffering from reversible serious illness or undergoing surgery, but the new technology can also be a threat to the elderly and the hopelessly ill who inevitably will die, but not quickly or easily because the same machines that preserve life can exacerbate inevitable death."

How did technology, once regarded so positively, become so objectionable as to start a new social movement worldwide? Before the 1950s, when doctors and nurses practiced without benefit of modern medicine, the right-to-die was of little concern, since medical science was unable to extend appreciably the lives of terminally ill patients. People understood that death was inevitable and unavoidable. Daniel Callahan, founder and former president of the Hastings Center, which studies ethical issues in medicine, says that death

was seen across the entire life cycle, from children to elderly people. Medicine could do very little in the way of cure or in the extension of life. That came from better sanitation, nutrition and housing, not through medical intervention. Medicine provided comfort care and palliation. Most importantly, the cultures of the prescientific era developed various religious and cultural rituals to help people cope with death and grief. Even though death was feared, it was accepted and placed in the context of people's lives.


Most people died at home without medical treatment or technology. In 1949, 50 percent of the U.S. population died in institutions — hospitals, medical centers, or nursing homes. In 1958 the figure was 61 percent. Two decades later the number had risen to 71 percent. Now, over 80 percent die in medical institutions. In the past death came naturally, and when aid in dying was appropriate, the privacy of the domestic bedroom shielded a doctor who deliberately overmedicated. Little was written about the care of the dying. Death occurred through the natural progression of life. The absence of sophisticated medical procedures made illness more likely to be deadly than it is today. Certainly death then was swifter. The permanently unconscious patient died quickly from additional complications or starvation, whichever occurred first. Pneumonia, influenza, tuberculosis, and common infections produced rapid death before the invention of penicillin during World War II. Technology has dramatically changed the trajectory of illness. We now have long periods of functional decline.

Technological advances during World War II dramatically changed the prognosis of the dying patient as well as the mind-set of the nation. Penicillin, first used in military hospitals, and, later on, other antibiotics, enjoyed widespread use and were responsible for the control of acute and communicable diseases. By the 1950s technological wizardry had come to the forefront with stunning results. The decade was alive with possibilities. According to Glick, the public was justifiably awed as

surgical techniques improved, and cancer patients, for example, could undergo surgery that might not cure but could postpone the ravages of illness. Developments during this period included intravenous feeding, new drugs to fight infection, and cardiopulmonary bypass machines and coronary angiography for open heart surgery and for studying coronary circulation. In the 1960s, ventilators, cardiac resuscitation, kidney dialysis, organ transplants, artificial heart valves, and more antibiotics were added to the medical arsenal. Computer axial tomography (CAT scanners) and nuclear magnetic resonance imaging (MRIs), which were superior to x-rays, appeared in the 1970s and 1980s. New drugs for fighting the progression of AIDS and other diseases are on the way, and organ transplant and artificial skin technology is improving.


Following the war, the United States underwent a massive transformation, driven primarily by prosperity and technological advance. Both world wars and the Great Depression were things of the past, and the country was ready to tackle all its problems. The mood was optimistic, and the air was alive with apparently limitless possibilities. The impressive advances in well-being, including consumer products and services, were introduced primarily in the twenty-five years following World War II.

Much of what we take for granted every day stems from that postwar era: In 1945 almost no one had a television, yet by 1994, 97 percent of Americans had color TVs; in 1940, U.S. commercial aircraft carried 3.5 million passengers, yet by the mid-1990s, the total exceeded 400 million; and, introduced in the 1960s, oral contraception — the Pill — revolutionized birth control, making it easier for women to work, families to limit their children, and couples to engage in sex without fear of pregnancy. Highways, automobiles, communications, home appliances, computers, and farm machinery expanded the constantly growing list of consumer-oriented innovations.

The public, surfacing from thirty years of hard times, saw technology as a means of winning the war against death, says journalist Robert J. Samuelson:

Once a problem had been identified, it became the enemy and could — as the Second World War had shown — be defeated with the right tactics and weapons. Sometimes the metaphor was applied explicitly, as with the 1960s War on Poverty or the 1980s "war on drugs." More often it was simply a frame of mind that Americans adopted when confronted with society's imperfections. ... Both the war and the Depression seemed to discredit the notion that "just leaving things alone" was the best way to proceed. The postwar style of politics would blend the two experiences into the "politics of problem solving." The phrase conveyed a faith that, as a nation, we might solve whatever problems presented themselves.


President John F. Kennedy told Americans in 1961 that the United States would put a man on the moon by the end of the decade. Work began, and the goal was achieved. With this dramatic accomplishment the conquering of any technological frontier seemed not only worth conquering but capable of being conquered. Hoefler comments: "Questions about whether going to the moon was really the right thing to do with the billions of dollars spent on that pursuit got very little attention at the time. Instead, it seemed as if the collective American reaction to the idea was 'if we can (and of course we can), then we should.'"

The twenty years following the close of World War II have been called "the Gilded Age of research, the triumph of laissez-faire in the laboratory," writes David J. Rothman, professor of social medicine and history at Columbia University and director of the Center for the Study of Society and Medicine at the Columbia College of Physicians and Surgeons. The thrust of public policy was to finance organizations and individuals able to continue the spectacular achievements in medical research that had begun during World War II. The victories over smallpox, typhoid, tetanus, yellow fever, and other infectious diseases were recounted. Americans reveled in the exhilarating certainty that humanity was approaching a time when some of the most dreaded diseases could and would be wiped out, and this certainty was fostered by the research community and the press. No science fiction achievements, however grandiose, seemed unrealistic. The discovery of the "miracle drug," penicillin, served as proof of the unlimited possibilities that existed to reduce human suffering.

Society began its infatuation with technology as a result of this infectious excitement. The medical community was no exception. It began functioning under what is known as the "technological imperative": the belief that it is obligated to use whatever medical treatment and technology is available, for as long as possible, however small the potential benefit, however high the emotional, mental, physical or financial cost to the patient and his or her family.

Political figures joined the all-out battle against diseases and the National Institutes of Health embodied the national mandate. Congress appropriated approximately $700,000 for the NIH in 1945. Rothman points out: "By 1955, the figure had climbed to $36 million; and by 1970, $1.5 billion, a sum that allowed it to award some 11,000 grants. ... Indeed, the scope and significance of NIH operations were such that through the 1980s, practically every chairman of a basic science department in major American medical schools was at some point in his career an NIH fellow or NIH grant recipient."

The technological explosion perpetuated the myth that medical technology could cure all the diseases that plague us, and perhaps even eliminate death itself. As a result the government has continued to invest more money in finding new and better cures. In 1983, for example, $6 billion was spent on health research alone. The expectation for each year in the 1990s well surpassed $10 billion.

An early contribution to this technological explosion, introduced in 1952, originated in Denmark during the worldwide polio epidemic. Seeing a large group of children in his clinic and knowing they would die, an anesthesiologist in Copenhagen introduced the technique of using airbags to pump oxygen into the lungs of these failing patients. The technique worked, but it required continuous pumping to be effective. All the medical students of the Copenhagen Medical School and all of the nurses in the hospital spent a week pumping oxygen into the children's lungs, saving many of them from certain death.


(Continues...)

Excerpted from Freedom to Die by Derek Humphry, Mary Clement. Copyright © 2000 Derek Humphry and Mary Clement. Excerpted by permission of St. Martin's Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents

Contents

Title Page,
Epigraph,
Prologue,
Introduction,
PART ONE - The Impetus for Change,
Chapter 1 - Medical Technology's Onslaught,
Chapter 2 - The Rights Culture's Impact,
Chapter 3 - The Decline of the Doctor-Patient Relationship,
Chapter 4 - Poor End-of-Life Care,
Chapter 5 - The Impact of AIDS,
PART TWO - The Birth of a Movement,
Chapter 6 - At Last, New Rights for Patients,
Chapter 7 - The Birth of the Hemlock Society,
Chapter 8 - Step Forward, Step Backward,
Chapter 9 - A Tale of Two Doctors,
Chapter 10 - The Dutch Experiment,
Chapter 11 - The World's Problem,
PART THREE - Opposition from the Establishment,
Chapter 12 - Religion Resists Change,
Chapter 13 - Medical Hierarchy Opposes Reform,
Chapter 14 - President and Government Resist Reform,
PART FOUR - Into Action — The Battle for Rights,
Chapter 15 - The West Coast Resorts to the Polls,
Chapter 16 - Oregon Breaks Through,
Chapter 17 - Oregon Gives a Second Mandate,
Chapter 18 - How the Oregon Law Works,
Chapter 19 - On the Way to the Supreme Court,
Chapter 20 - The Supreme Court Leaves the Door Open,
PART FIVE - The View from Here,
Chapter 21 - The Unspoken Argument,
Chapter 22 - The Road Ahead,
Also by Derek Humphry,
Appendix A - A Twentieth-Century Chronology of Voluntary Euthanasia and Physician-Assisted Suicide,
Appendix B - Laws on Voluntary Euthanasia and Physician-Assisted Suicide,
Appendix C - The Oregon Death With Dignity Act,
Notes,
Index,
About the Authors,
Copyright Page,

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