Dying Right

The Death with Dignity Movement

Daniel Hillyard, John Dombrink

• Publisher: Routledge
• Year: 2002
• eBook ISBN: 9781135957681
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

Dying Right provides an overview of the Death With Dignity movement, a history of how and why Oregon legalized physician-assisted suicide, and an analysis of the future of physician-assisted suicide. Engaging the question of how to balance a patient's sense about the right way to die, a physician's role as a healer, and the state's interest in preventing killing, Dying Right captures the ethical, legal, moral, and medical complexities involved in this ongoing debate.

1
A Fate Worse than Death

CHALLENGING THE LEGAL TREATMENT OF DYING

I have terminal cancer. To have a terminal disease drag on, to endure the pain is absolute hell. At the end, I want the choice to accept treatment, to refuse treatment, to die on my own terms in a dignified manner.

—Pro-reform television advertisement from the 1991 Washington Initiative 119 campaign

INTRODUCTION: AMERICA’S FIRST LEGAL PHYSICIAN-ASSISTED SUICIDE, 1998

On March 27, 1998, an Oregon woman in her eighties who was near death from breast cancer legally ended her life with barbiturates supplied by a physician. Another fourteen persons would join her in utilizing the Oregon Death With Dignity Act (ODDA) in its first year of operation.

The Oregon woman was the first person to die under the provisions of the ODDA, a 1994 law passed by voter referendum. The ODDA provides a safe harbor from criminal and civil law for family members, counselors, and physicians who help competent adults with less than six months to live end their lives with prescription drugs. The law also protects patients from fraud and coercion. The ODDA is the world’s first law of its kind.

The ODDA was drafted by attorneys in consultation with interested health care professionals and became effective on October 27, 1997, after three years of failed court challenges and an unsuccessful repeal effort. While these challenges were pending, the Oregon Health Division—the agency charged with overseeing and regulating ODDA practices—produced a list of requirements for physicians to follow in implementing the act (Oregon Health Division 1997:1). According to the Oregon Health Division, the attending physician has the following responsibilities (Oregon Health Division 1997:1):

1. to determine whether the patient has a terminal illness, is capable, and has made the request voluntarily;
2. to inform the patient of his/her diagnosis and prognosis, the risks and probable result of taking the prescribed medication, and the feasible alternatives including comfort care and pain control;
3. to refer the patient to a consulting physician for confirmation of the diagnosis and determination that the patient is capable and acting voluntarily;
4. to refer the patient for counseling if, in the opinion of either the attending physician or the consulting physician, the patient may be suffering from any mental disorder, including depression, causing impaired judgment;
5. to request that the patient notify next of kin (the patient does not have to comply); and
6. to offer the patient the opportunity to rescind the request at any time.

The division also produced detailed confidential report forms and a protocol for interviewing physicians who prescribe medicine under the provisions of the new law. These epidemiological data provided profiles of patients who received prescriptions, patients who actually used the prescriptions to end their lives, and the physicians involved and circumstances surrounding these events.

The fifteen reported deaths consummated eight years of tense political struggle over the expansion of patients’ rights to control the time, place, and manner of death. The efforts included ballot measures in three states besides Oregon—Washington (1991), California (1992), and Michigan (1998)—and two cases decided by the United States Supreme Court—Washington v. Glucksberg (Compassion IV 1997) and Vacco v. Quill (Quill III 1997).

This book presents an analysis of how legal reformers succeeded in Oregon. Our analysis centers on how reformers framed what might be considered a radical notion—physician-assisted suicide—in the context of personal freedom. The long history of right-to-die reform enshrined the values of autonomy and choice in medical decision making, especially at the end of life. Around the country, public support for the following statement: “[A] person has the right to end his or her life if this person has an incurable disease” increased steadily from 38 percent to 61 percent between 1977 and 1996 (CNN/USA Today Gallup Poll 1996; Glick 1992). Popular beliefs about medicine and personal freedom, plus the maturing history of laws and clinical practices permitting control of the time, place, and manner of death, provided reformers with a proven political framework.

This book details the reformers’ strategies. From the data that we have collected for more than seven years—at the front lines and from behind the scenes—we examine how the need for change was conceptualized, argued for, and communicated to a public that has been somewhat interested in but also quite wary of some of the implications of legalizing physician-assisted suicide.

As the Dutch legal scholar John Griffiths has stated, the events described in this book are indicative of a growing “sea change” worldwide in the relationships between patients, doctors, and the state. This book provides a thick description of modern death and the contested claims of rights related to dying in the modern era. In one sense, we chronicle the growing awareness of the shortcomings of medicalized dying and the concomitant perception that there exists a “right way”—meaning a desirable way—to die. In another sense, we detail the social processes by which personal desires about dying and death have been folded into the broader rights consciousness that exists in the United States—processes that have culminated in the so-called right to die.

The centerpiece of our analysis is the state of Oregon and its watershed passage of the ODDA in 1994. Oregon is the first place where death with dignity (physician-assisted suicide) was legalized.

The Netherlands has been the leading country in this approach toward the law and dying. The Dutch devised and overseen the evolution of a policy of nonprosecution of voluntary euthanasia within guidelines established by the legal system, the political parties, and the medical profession. However, the Dutch maintained their criminal statutes in this area (Griffiths et al. 1998; Legemaate 1995). Only in 2000 have the Dutch passed laws to fully legalize their twenty-five-year experience with euthanasia (“Dutch Take Step” 2000). Australia (Brough 1997), Colombia, and Switzerland (Associated Press 1999b) have instituted various decriminalization schemes, but Australia’s was rescinded, Colombia’s is not yet fully operational, and Switzerland’s resembles the Dutch in a policy of nonprosecution. Thus Oregon is the first entity in the world to implement a regulatory regime for legalized physician-assisted suicide.

But Oregon does not stand alone in death with dignity reform efforts. Reformers in Washington and California attempted ballot initiatives several years before 1994 (and reformers in Michigan and Maine have failed since 1994). And while court challenges and a repeal effort blocked implementation of the ODDA, two court challenges moved through the federal courts and were finally decided by the U.S. Supreme Court. Each of these efforts—the three early proponent initiatives, the repeal initiative, and the federal court cases— is described in great detail in this book.

From a broader perspective, in this book we describe the dynamics of law and social change. Beginning with an empirical look at changes in the nature of dying, we explore the right-to-die movement in terms of changing relationships between doctors, patients, and the state. Autonomy and compassion are shown to be the two major themes that have been championed by reform proponents. On the other side of the debate, arguments that physician-assisted suicide is tantamount to killing patients, that legal change will result in the wrong persons using the law for the wrong reasons, and that the economically marginalized will be pressured to die against their will are closely considered. Other opposition arguments are also contemplated, including fears of a slippery slope to more active or involuntary forms of euthanasia and the potential for an erosion of trust and good care in the patient-physician relationship, as well as the ramifications of physician-assisted suicide on the reputation of the medical profession generally.

A final aspect of the book is discussion of the more nuanced ways in which the death with dignity movement is impacting law and society. Of primary interest is the growing recognition, at least among clinicians, that human intervention in the timing and manner of death is already as invasive as, and as risky, assisted suicide. Some people close to the debate argue that de jure decriminalization of assisted suicide is preferable to de facto decriminalization because only in the latter case are regulation and oversight truly possible. In this way, assisted suicide criminal law reform reflects the earlier debates over the proper use of the criminal law in the regulation of gambling, drugs, prostitution, and abortion.

Of related interest are the semantic arguments that in some measure have led to redefining suicide. Here our analysis draws several parallels with the abortion movement and with a variety of activities under the control of the criminal law—some of which have undergone significant change in recent decades. Besides the fact that abortion and physician-assisted suicide each deal with laws and policies that regulate death, they also have in common a divisive cultural struggle in which the changing conceptualization of a medical practice has accompanied a shift in public opinion and legal reform.

The last nuance that we explore is the rise of claims that death presents opportunities for life-enhancing experiences. Some suggestions include helping families and individuals to gain closure through death. Others include improving the care of the dying through clinical efforts such as better pain management. Better medical training has been targeted by some reformers, as has expanding hospice care. All of these suggestions are offered as ways of sidestepping the “need” to change the law to permit assisted suicide. In this way, the actors involved in the assisted suicide reform struggle share many features with other reformers in the broad area of law and social change.

Three functions are served by the various analytical perspectives taken in this book. In a limited sense, the book tells the stories of intense political struggles at the ballot box and in the courts. In a broader sense, we derive empirical explanations for why further death and dying reform is happening, why it is happening here in the United States, and why it is happening through direct legislation and litigation. Finally,Dying Right is a detailed account of how proposed changes in criminal law and medical practice are actually contested.

CHANGES IN THE NATURE OF DYING

This isn’t what Dad wanted—these machines. That’s why he made a living will.

—Pro-reform television advertisement from 1991 Washington Initiative 119 campaign

During the last fifty years, expectations about the role of medicine in society have stimulated widespread legal and normative change in America and other Western industrialized societies. Before the 1950s, the issue of killing patients was not of great concern because medical science was unable to appreciably extend the lives of terminal patients (Glick 1992). Common causes of death before the discovery of antibiotics included pneumonia, tuberculosis, and influenza. Those in a permanent unconscious state died quickly from additional illnesses and complications or because they were unable to eat or drink. Those with cancer and heart disease or victims of debilitating accidents frequently contracted pneumonia and died before their otherwise terminal condition took its toll.

During the 1950s, 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 (Jonsen 1990; Zussman 1992). In the 1960s, ventilators, cardiac resuscitation, kidney dialysis, organ transplants, artificial heart valves, and more antibiotics were added to the list of life-prolonging technologies (Porter 1998).

One repercussion of medical innovation has been a dramatic increase in the number of hospital admissions. Until mid-century, most people died at home without extraordinary medical equipment or treatment. Today, however, less than 20 percent of the population die outside hospitals or nursing homes (Foley 1996). As a result, more and more health care dollars have been spent on chronic care so that by the early 1980s some 30 to 35 percent of Medicare expenditures were devoted to the 5 percent of recipients who were in their last year of life.

As was the case with other technological advancements, medical innovation was often accepted on its face, saving legal, ethical, economic, and social considerations for later. At present, however, we know that one of the perceived detriments of the war on death and disease has been the prevalence of institutionalized dying (Foley 1996; Zussman 1992). Since many of these people do not want all the life-extending treatment they receive, it has been contended that to give them a greater choice, the right to say no would restore some of the dignity lost through the medicalization of life and death (Quill 1993; Shavelson 1995).

Table 1.1 illustrates where change in the locus of death falls in the epidemiology of the causes of death. As the table indicates, the age of pandemics receded as technological advancements transformed the immediate causes of death. But technological advancements, which had to be applied in institutional settings, ushered in a new age in the causes of death. In the new age, people died primarily from ailments such as heart disease and the advanced state of cancer, conditions that heretofore were rare, as people died well before reaching such chronic stages of illness.

The effects of these changes are presented in Table 1.2, which illustrates that institutionalized dying has led to greater physician control, a greater role for economic considerations, and greater patient ignorance about the law and ethics governing patient choice.

Prompted by these conditions of modern dying during the last quarter century, powerful social movements have emerged to create a new era of medical politics. At the center of the contemporary politics of medical practice have been intellectuals such as Ivan Illich, who maintained that “the medical establishment has become a major threat to health” (Illich 1976). Other movements include the patients’ right movement (Macklin 1993); the right-to-die movement (Glick 1992); the women’s movement (e.g., efforts such as the Boston Women’s Health Book Collective’s Our Bodies, Our Selves [1971] and the efforts it spawned); critics of for-profit, free-market, fee-for-service medicine; the independent living movement; and the emerging alternative medicine movement. Largely as a result of the public debate inspired by these movements, questions of individual and public harm, choice and consent, and constitutional rights have increasingly come to characterize the contemporary discourse on dying and all that surrounds it.

Table 1.1 Epidemiology of the Causes of Death

Table 1.2 Change in the Locus of Death and Its Effects

These cultural changes exist in a dialectical relationship with clinical practices and their attendant discourse. As patients have demanded greater parity in the physician-patient relationship, including the right to die on their own terms, physicians have also struggled to preserve a level of nobility and autonomy based on expertise in the practice of medicine. The conflicts between patients, physicians, and medical ethics have often been resolved, at least temporarily, through changing discourse.

The term “mercy killing” is a simple example. Culturally, mercy killing is a beneficent act, as is denoted by the concept of the “coup de grace,” or “blow of grace.” But, mercifully or not, we do not go to a hospital to be killed. And killing is contrary to the cultural and professional role of physicians. The term “euthanasia” means simply “easy death.” Yet it too is troublesome because of its connections to Nazi genocide. New terms such as “hastened death,”“doubleeffect death,” and “death with dignity” have been created by patients and clinicians to suit the needs and values of both and, most importantly, to legitimate prevailing practices.

The same processes have been essential to meet the challenges of technological advancements. The conflicts between patients, physicians, and medical ethics during the era of medicalized death have even led to having to create new clinical and legal criteria for establishing whether a person is living or dead. With the advent of cardiopulmonary resuscitation (CPR), defibrillators, and respirators, a determination of death based on heart and lungs became outdated. The brain became the organ wherein life or death could be established. But controversy arose between just what quantity of brain function, or more properly which parts of brain functioning, was required to establish valid clinical criteria.

A further element of establishing a criteria of death is the role of the state. One of the roles of physicians has been to prevent killing on behalf of the state. In the context of death and dying, the relationships between physicians and the state are fully evident in the fact that clinical criteria of death are statutory in every state. That is, the definition of death in a particular state is not merely a clinical matter—the definition of death is a legal definition.

A concept introduced by patients and taken up by ethicists is the notion of “quality of life.” From a dying patient’s perspective, quality of life is more important than the criteria of death, the role of physicians as healers, or the state’s interest in preventing killing. A persistent vegetative state is not the same as being alive, even if a whole brain statute pretends otherwise. The relevance of this discussion to clinical practices and the social movements that have been and still are working to alter them is illustrated by the repeated shifts in the line between what actions are legal and not legal. The rationales for all of these distinctions reflect a balance between patients’ senses about a right way to die, physicians’ role as healers, and the state’s interest in preventing killing.

The events described in this book may seem to portray the sea change in physician-patient relations as pressures that impinge upon clinical practices. But that is only half of the picture. The landmark court decision that gave Karen Quinlan’s parents the right to disconnect her ventilator was borne out of their struggle against doctors operating under traditional medical ethics. The relevance of the dialectical relationship between clinical practices and reform efforts will become increasingly clear as we progress through this book. Underscoring all the regional contests detailed in this book, the central struggle in the right-to-die and death with dignity movements is how to define and safeguard the right of patients to orchestrate their own deaths according to their own morality and how to reconcile that with the healing role of physicians and the state’s interest in preventing killing. This is the principal significance of the changes described in this section.

THE RIGHT-TO-DIE MOVEMENT ADVANCES

Historically speaking, the right-to-die movement resonates with other rightsoriented movements of the 1960s and the 1970s. The discursive themes proceeding from the “rights” movements of the 1960s and 1970s have formed the sociopolitical terrain that has inspired and fueled the contemporary death with dignity movement, while the conservative politics of the 1980s has presented obstacles for the movement. Ultimately, however, the death with dignity movement has succeeded in tapping into the discourse from each of these social movements and their attendant arenas of debate to frame its grievances, press its claims, and seek support for the movement.

In 1976, United States courts and legislatures began weighing the relative strengths of competing claims, as laws were created to address issues of treatment withdrawal, advance directives, surrogate decision makers, and the symbolism of artificial nutrition and hydration. Moreover, through judges and lawyers, states reinforced interests in preventing suicide, protecting the vulnerable, and promoting the health care professions. This bundle of interests was first presented to the U.S. Supreme Court...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Preface
• Acknowledgments
• 1 A Fate Worse than Death
• 2 Death with Dignity
• 3 Passage of the Oregon Death with Dignity Act
• 4 A Movement to Repeal the Oregon Death with Dignity Act
• 5 Compassion in Dying
• 6 Building the Safe Harbor
• 7 Death with Dignity in Other States and Other Countries
• 8 The Good Death
• References