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

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

by Derek Humphry, Mary Clement

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Freedom to Die: People, Politics and the Right-to-Die Movement by Derek Humphry, Mary Clement

This seminal history of the right-to-die movement charts the seismic shifts in American attitudes and policies over the last 50 years. Humphry is author of the bestselling Final Exit and is the founder of the Hemlock Society.

Product Details

ISBN-13: 9780312194154
Publisher: St. Martin's Press
Publication date: 09/15/1998
Edition description: First Edition
Pages: 384
Product dimensions: 6.50(w) x 9.56(h) x 1.27(d)

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Freedom To Die

PART ONE

The Impetus for Change

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."1 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.2

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?3 Why do an even higher 78 percent of adults believe that PAS should be legalized by the federal government?4 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 thebaby 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."5

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.6

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.7

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 impressiveadvances 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.8

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.'"9

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. 10 The thrust of public policy was to finance organizations and individualsable 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."11

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.

It was apparent that this innovation was useful but impractical in its current form. And so, by attaching a mechanical pump to the airbaginstead of a student or a nurse, medicine created the first artificial respirator. This piece of technology became popular in both the United States and Europe, so that virtually every hospital had at least one respirator by the mid-1950s. Bioethicist Stanley J. Reiser speaks of its wonders: "It was a miraculous machine in that patients coming into hospitals with acute respiratory failure, stroke from drug overdose, or in diabetic coma could be treated in the hope that the natural breathing mechanism would be restored and the technology could be removed."12

This emphasis on technology has brought mixed blessings. The increasing medical possibilities have had, in general, very positive effects. More patients survive, fewer patients have severe handicaps, and certain suffering is reduced. On the other hand, medical advances in diagnosis and treatment have also made it difficult to get off the inexorable medical treadmill. There is always a promising new treatment to be tried, and doctors play down the low success rate, placing an often unrealistic emphasis on "hope." For the first time in history, physicians have the ability, knowledge, and sophisticated technology to sustain the physical life of patients with no regard to the quality of life they are willing to endure. The dying process is often merely prolonged, with no known way of bringing the patient back to more than a subhuman existence.

These mixed results are reflected in Reiser's account of a Viennese anesthesiologist, Dr. Bruno Haid, who enthusiastically used this miraculous respirator, only to see, like others, the dark side of the technology and the wasteland it often leaves behind:

For they saw that while many of the patients they treated indeed survived because of this machine, not all of them survived to become functional in the way they had been before being overtaken by illness. A number of them were not dead, but in some ways they did not seem to be alive. They lingered, lingered in this never-never land between functioning life and death. And as some of his patients remained in this state, Haid came to face dilemmas to which he had no solution.13

When death finally does take place, says Sherwin Nuland, physician and author of the best-seller, How We Die, it is usually not the classic bedroom scene, quiet and subdued with respectful friends paying last respects and family gathered around the bed to say farewell. Nuland describes the more common scene as one of

beeping and squealing monitors, the hissing of respirators and pistoned mattresses, the flashing multicolored electronic signals—the whole technological panoply is background for the tactics by whichwe are deprived of the tranquillity we have every right to hope for, and separated from those few who would not let us die alone. By such means, biotechnology created to provide hope serves actually to take it away, and to leave our survivors bereft of the unshattered final memories that rightly belong to those who sit nearby as our days draw to a close.14

Technology has created problems, particularly for the terminally ill patient, when the "technological imperative" has taken precedence over the individual's beliefs, values, and preferences. By the 1950s, techniques that had been developed to serve human interests, and that often did so brilliantly, began to override and even displace human priorities. Since then many treatments have been used overzealously. It is ironic that modern medical tools, so beneficial to the accident victim and to those sustaining a reversible illness, can be so detrimental to the elderly and hopelessly ill who suffer further at the hands of "progress."

Cardiopulmonary resuscitation (CPR) is a good example of treatment yielding unintended consequences when used indiscriminately, as is frequently the case. CPR refers to the medical techniques used to restart a patient's heart and breathing when the patient suffers heart and pulmonary failure. CPR may involve such simple efforts as mouth-to-mouth resuscitation and external chest compression. Advanced CPR may involve electric shock, insertion of a tube to open the patient's airway, injection of medication into the heart, and, in an extreme case, open-chest heart massage. CPR can be a true lifesaver when used on the healthy and strong patient, typically an accident victim, for whom it was initially intended.

Research has shown, however, that ill or frail patients with cardiac or pulmonary arrest are unlikely to benefit from CPR, even though it is almost routinely given them. For the elderly and those in the final stages of terminal conditions, cardiopulmonary arrest lets death occur peacefully and painlessly. If such patients are resuscitated, however, there is a high probability that the brain and other vital organs will be damaged from lack of oxygen, leaving the individual in an even worse physical condition. Also, if revived, these patients are typically transferred to costly intensive-care wards, where dying is forestalled only temporarily but the dying process is prolonged, at great emotional and financial expense to the family.

Technological innovations provide mechanical breathing, food, and water to patients who would otherwise have died long ago. There are approximately fourteen thousand patients in a persistent vegetative state at any given time, like Karen Ann Quinlan had been, for example, with complete loss of mental functions, unconscious, unaware of herself or the surrounding environment. These patients are experiencing neitherpain nor emotion, yet are able to survive for ten, twenty, and thirty years on a respirator, with a type of artificial nutrition and hydration only available for the last twenty-five years.

One of Quinlan's physicians, Dr. Joseph Fennelly, has harsh words for the effects of our idolization of technology:

World War II we believed was won by technology—The Nordan Bombsight, radar, and for a really big finish, The Atom Bomb. Now we were ready for the Last Battle. The Battle Against Death Itself! And this battle would be won, as the war was, by high technology ... . Cardiac resuscitation, moves from bench science to its use on virtually every patient. The failures from this technique, the comatose patients, are closeted in the nursing homes or at home. The families suffer spiritual and economic bankruptcy. The "failures" of our successes were denied in the blaze of unexamined "progress." Death became regarded as a failure and the terminally ill as embodiments of that failure.15

This obsession with the eradication of death, added to our near deification of technology, has prevented many health care providers from knowing when to stop, when to say, "Enough." Daniel Callahan calls this approach "technological brinkmanship." As a nation, he warns, "We believe that we should run the machinery of medicine at top speed right to the edge of the cliff called 'futility' and then stop it, just before it begins to do real harm to the patient. The trouble with this practice of brinkmanship is that it does not work well. Not at all. We cannot control our technologies with the precision necessary to stop at just the right moment, going as far as we can but not a bit further."16

Financier and philanthropist George Soros correctly observes that this emphasis on treating and curing diseases has altered the practice of medicine, bringing severe shortcomings with our successes. Soros argues: "We have created a medical culture that is so intent on curing disease and prolonging life that it fails to provide support in that inevitable phase of life-death. Advances in high technology interventions have contributed to this weakness in our medical system, deluding doctors and patients alike into believing that the inevitable can be delayed almost indefinitely."17

Why this overuse of technology and the unbearable consequences that often follow? Why can't health care professionals control technology instead of letting technology control them? The tendency toward excessive or inappropriate use is prompted by physician training, fear of malpractice, greed, methods of reimbursement, consumer demands, cultural priorities, and denial of death. First, doctors are trained to heal and cure, not to comfort and console. They are also trained to use all the state-of-the-artmedical technology at their disposal to defeat the avowed enemy, death. The death of a patient is often perceived by the medical community as a failure of the doctor. Perhaps as a result of their training, physicians tend to overtreat uselessly in an attempt to protect their fragile egos. When patients fail to respond to treatment, says Hoefler, doctors perceive a blow to their self-esteem, which they promptly counteract with even more aggressive treatment.

 

Moreover, death is a taboo subject in our culture. And, like most taboo subjects, we both deny and fear it. Whereas death was openly discussed and sex was taboo in the Victorian era, quite the opposite is true today. Sex appears in most aspects of everyday life in the twenty-first century, yet we keep death shrouded in euphemisms, sanitized, and hidden from view whenever possible. "Death was difficult to deny before the modern age," writes Hoefler in Deathright, "since there was simply too much of it around. But geographic mobility increased the emotional and social distance between family members, and industrialization helped put senior citizens—those most likely to die—out to pasture. And urbanization facilitated the scattering of the extended family and precipitated the abdication of responsibility of caring for both the dying (to the hospitals) and the dead (to funeral directors)."18 These historical processes have robbed us of the understanding that death is the natural culmination of life, part of the natural order of things. We are so distanced from it that we can almost deny its existence.

In addition, when a physician contemplates withholding treatment or using less aggressive treatment, the fear of a medical malpractice lawsuit quickly pushes more conservative treatment from his or her mind. In fact, medical liability is a valid concern in medical practice. Three-quarters of all obstetricians and gynecologists, one-half of all surgeons, and one-third of all physicians will be sued at least once during their medical career.19 Some doctors think it is malpractice not to use all available technology and fear that their patients will think similarly. However, the fear that cooperative physicians will be slapped with a criminal or civil multimillion-dollar lawsuit for the untimely death of a patient whom they have not treated aggressively, at the request of the patient or the patient's surrogate, is not grounded in reality. Such suits are rare to the point of nonexistence.

Doctors and hospital administrators have repeatedly taken the cases of comatose, dying patients to court, begging for guidance and protection from civil and criminal liability. They have repeatedly received both. The courts have done their job admirably, reiterating that treatment decisions are to be made by the patient or by the patient's proxy or surrogatethrough Living Wills and Health Care Proxies. These documents contain instructions regarding future medical care, including life-sustaining measures, in the event of decision-making incapacity. It is not the role of either the physician or the health care institution to make decisions about forgoing treatment. Courts have clearly stated, in the cases of Karen Ann Quinlan and Nancy Ellen Jobes in particular, that the medical profession's role is not one of medical decision-maker-that role is the prerogative of the patient or surrogate. In In re Jobes, where a nursing home rejected a family's request to discontinue the tubal feeding of their thirty-two-year-old daughter who had been in an unconscious state for seven years, the court ordered that the artificial feeding be stopped and said: "Courts are not the proper place to resolve the agonizing personal problems that underlie these cases. Our legal system cannot replace the more intimate struggle that must be borne by the patient, those caring for the patient, and those who care about the patient."20 Yet health care professionals return to the courtroom time and time again for legal protection before discontinuing treatment.

There is a new legal trend, however, whereby doctors are beginning to incur liability for continuing treatment against a surrogate's wishes on behalf of an incompetent patient. Patients are filing lawsuits to hold medical professionals responsible for disregarding end-of-life directives. While juries have rarely faulted doctors in the past for keeping a patient alive, this is changing.

For example, a young woman in Michigan, Brenda Young, had a history of progressively worsening seizures, which her doctor had warned her would eventually leave her severely disabled. Hoping to avoid precisely the situation she later faced, she signed a Living Will and a Health Care Proxy authorizing her mother to stop all life-support treatment if she became incapacitated. When she suffered a particularly severe seizure, she was put on a respirator, despite her mother's insistence that she did not want this life-sustaining treatment. Young emerged profoundly disabled, thrashing and screaming for hours at a time, requiring total care. The family sued the hospital for continuing unwanted medical treatment and ultimately, in 1996, won a $16.5 million judgment.

Money, fueled by consumer demand, is another reason for the excessive use of high-tech medical care. Some suggest that certain physicians overtreat their patients out of simple greed. There is certainly money to be made from keeping the hospital beds full. Sustaining lives is, to be sure, more profitable for all parties in the business of billing and receiving money for services. Dead patients generate no income for either the physician or the hospital. Moreover, expensive machinery, once purchased, must be utilized in order to support the original cost plus maintenance.

Unbelievable as it is, there is no classification under which a doctorcan bill for end-of-life comfort care. It was only as recently as 1996 that the medical profession officially acknowledged that some of the care delivered in hospitals is palliative (comfort care). Consequently using medical machinery is more profitable, for the doctor and hospital alike, than is tending to the emotional and spiritual well-being of the patient and his or her family, for which there is absolutely no reimbursement. Unable to bill for such care, small wonder that doctors rarely provide it. A new diagnostic code, however, is a positive step toward reimbursing professionals for services that—it is to be hoped—they will render more often, since comfort care is crucial to the improvement of deficient end-of-life care.

It is not only doctors who promote the overuse of technology in medicine. Consumer demand also plays a powerful part. Technology offers the possibility of a cure to patient and family alike, promising eternal hope. Often that hope performs miracles. More often, however, it falls short, with the patient tethered to tubes protruding from every orifice of the body—sometimes conscious and sometimes not, yet never functioning with the anticipated quality of life. Nevertheless the yearning for highly specialized techniques and procedures turns into expectations that, however unreal, are then turned into public demands. The public has bought the myth that death is avoidable, that the cure is out there. It may be too late for any specific patient, but these expectations pressure the hospital and the doctors, who often acquiesce, acquiring excess equipment and gadgetry to satisfy future consumer demand.

Although powerful modern medical technology has become venerated and pervasive, heightened social and political concerns have nonetheless emerged over the right of the individual to restrain the use of technology and to control the time and manner of his or her own death. A backlash has developed against the mechanical and the impersonal. Americans are uncomfortable with the cold technological arrogance of modern medicine, and they fear being kept alive in ways that constitute an affront to their dignity and a burden to their loved ones—when no reasonable expectation of recovery exists.

A revolution against such care is taking place. Increasingly patients, family members, and members of the medical profession are making the decision to forgo life-sustaining treatment and the agony of a prolonged death. People are attempting to regain or maintain the control they have either lost or fear losing. "Managed death," as it is called, has become routine. Indeed, of the 1.25 million deaths in medical institutions every year, 70 percent are "managed" or right-to-die cases. According to the American Hospital Association (AHA), a great many of the "6,000 deaths that occur in this country every day are somehow timed or negotiated by patients, families and doctors who ... armed with an amazing array ofdeath-delaying technology ... reach a very painful and a very private consensus not to do all that they can do and let a dying patient die."21

Individuals have had, for many decades, the legal right to refuse unwanted medical treatment, including life-sustaining treatment, and the use of advance directives can be employed if the patient is unable to make these decisions. Advance directive is a term that encompasses Living Wills, Health Care Proxies and Do-Not-Resuscitate orders that authorize another individual to make medical decisions for an unconscious or mentally incompetent person whom technology, in one form or another, has kept alive up to that point.

However, not all seriously ill patients are being kept alive by powerful and modern medical technology as death approaches. There is, therefore, elevated public disquietude about those individuals not currently connected to life support who want to determine the course of their impending deaths with the aid of a physician. It is with these patients in mind that Oregon legalized PAS and that challenges were filed against laws prohibiting the practice in Washington and New York. The focus has thus turned to mentally competent, terminally ill—adults not on life-sustaining treatment—who wish to hasten their inevitable death with a doctor's prescription for lethal drugs.

The right-to-die is an evolving concept, one that connotes that death, in an intolerable situation, is preferable to life. It designates the authority of the individual over the paternalism of the medical profession, religion, and the law. Above all its basis is choice—the choice of the terminally or incurably ill to speed up the dying process when little or no quality of life remains, on or off life-sustaining technology.

Indeed, the Second Circuit Court of Appeals found no important difference between the choice of forgoing life-support and having a physician's help in hastening death. Neither one results in a natural death, ruled the court:

Indeed, there is nothing "natural" about causing death by means other than the original illness or its complications. The withdrawal of nutrition brings on death by starvation, the withdrawal of hydration brings on death by dehydration, and the withdrawal of ventilation brings about respiratory failure. By ordering the discontinuance of these artificial life-sustaining processes or refusing to accept them in the first place, a patient hastens his death by means that are not natural in any sense. It certainly cannot be said that the death that immediately ensues is the natural result of the progression of the disease or condition from which the patient suffers.

Moreover, the writing of a prescription to hasten death, after consultation with a patient, involves a far less active role for thephysician than is required in bringing about death through asphyxiation, starvation and/or dehydration. Withdrawal of life support requires physicians or those acting at their direction physically to remove equipment and, often, to administer palliative drugs which may themselves contribute to death. The ending of life by these means is nothing more nor less than assisted suicide. It simply cannot be said that those mentally competent, terminally-ill persons who seek to hasten death but whose treatment does not include life support are treated equally.22

Callahan does not mince words in his direct advice on how individuals can personally avoid the powerful clutches of technology, keeping in mind that fewer than 20 percent of the population die outside hospitals or nursing homes. "It is going to be increasingly important to keep critically ill people out of hospitals in the first place. If you don't want to die a high-technology death, stay away from the places where they provide high-technology medicine," he warns. "Stay at home if at all possible, any other place than the hospital. Go out in the woods; don't go near those places. If you don't want to be over-treated, stay away. We have to help people to die at home or in hospices."23

The current presumption of "when in doubt, treat," has often resulted in technology being used because it is there, not because its use is justified by patient need. To rely so heavily on technology and biological functions to define the states of life and death is to deny the very social, emotional, and spiritual aspects of life that give it meaning. In their zeal to fashion new and improved technologies, many doctors have promoted measures that are inappropriate and whose applications often have horrendous consequences. Their efforts have provoked a backlash of disapproval from the public and have provided an impetus for the right-to-die movement and changing public policy. As such, medical technology's onslaught is one of the most powerful forces of activism, as well as an essential answer to the question Why Now?

FREEDOM TO DIE: PEOPLE, POLITICS, AND THE RIGHT-TO-DIE MOVEMENT. Copyright © 2000 by Derek Humphry and Mary Clement. All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission except in the case of brief quotations embodied in critical articles or reviews. For information, address St. Martin's Press, 175 Fifth Avenue, New York, N.Y. 10010.

Table of Contents

Prologue 1(4)
Introduction 5(8)
PART ONE: THE IMPETUS FOR CHANGE
Medical Technology's Onslaught
13(14)
The Rights Culture's Impact
27(9)
The Decline of the Doctor-Patient Relationship
36(14)
Poor End-of-Life Care
50(25)
The Impact of AIDS
75(10)
PART TWO: THE BIRTH OF A MOVEMENT
At Last, New Rights for Patients
85(20)
The Birth of the Hemlock Society
105(18)
Step Forward, Step Backward
123(9)
A Tale of Two Doctors
132(22)
The Dutch Experiment
154(11)
The World's Problem
165(18)
PART THREE: OPPOSITION FROM THE ESTABLISHMENT
Religion Resists Change
183(20)
Medical Hierarchy Opposes Reform
203(17)
President and Government Resist Reform
220(11)
PART FOUR: INTO ACTION---THE BATTLE FOR RIGHTS
The West Coast Resorts to the Polls
231(12)
Oregon Breaks Through
243(13)
Oregon Gives a Second Mandate
256(21)
How the Oregon Law Works
277(19)
On the Way to the Supreme Court
296(25)
The Supreme Court Leaves the Door Open
321(18)
PART FIVE: THE VIEW FROM HERE
The Unspoken Argument
339(24)
The Road Ahead
363(4)
Appendix A: A Twentieth-Century Chronology of Voluntary Euthanasia and Physician-Assisted Suicide 367(8)
Appendix B: Laws on Voluntary Euthanasia and Physician-Assisted Suicide 375(2)
Appendix C: The Oregon Death With Dignity Act 377(10)
Notes 387(22)
Index 409

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