At Liberty to Die

The Battle for Death with Dignity in America

Howard Ball

• Publisher: NYU Press
• Year: 2012
• ISBN:
  9780814745274
• Topic: Law
• Subtopic: Law Theory & Practice
• Index: Law

Over the past hundred years, average life expectancy in America has nearly doubled, due largely to scientific and medical advances, but also as a consequence of safer working conditions, a heightened awareness of the importance of diet and health, and other factors. Yet while longevity is celebrated as an achievement in modern civilization, the longer people live, the more likely they are to succumb to chronic, terminal illnesses. In 1900, the average life expectancy was 47 years, with a majority of American deaths attributed to influenza, tuberculosis, pneumonia, or other diseases. In 2000, the average life expectancy was nearly 80 years, and for too many people, these long lifespans included cancer, heart failure, Lou Gehrig’s disease, AIDS, or other fatal illnesses, and with them, came debilitating pain and the loss of a once-full and often independent lifestyle. In this compelling and provocative book, noted legal scholar Howard Ball poses the pressing question: is it appropriate, legally and ethically, for a competent individual to have the liberty to decide how and when to die when faced with a terminal illness?

At Liberty to Die charts how, the right of a competent, terminally ill person to die on his or her own terms with the help of a doctor has come deeply embroiled in debates about the relationship between religion, civil liberties, politics, and law in American life. Exploring both the legal rulings and the media frenzies that accompanied the Terry Schiavo case and others like it, Howard Ball contends that despite raging battles in all the states where right to die legislation has been proposed, the opposition to the right to die is intractable in its stance. Combining constitutional analysis, legal history, and current events, Ball surveys the constitutional arguments that have driven the right to die debate.

1 THE CHANGING NATURE
OF DEATH IN AMERICA

In the long run, we are all dead.

—John Maynard Keynes¹

Old age is no place for sissies.

—Bette Davis²

Except for those who die suddenly, death is a gradual process³ common “to all living organisms in the earth’s biosphere.”⁴ The clinical definition of death, however, has evolved over the centuries because medical science developed new techniques and instruments that doctors used to treat their patients. As these new protocols and technology became available, new insights emerged regarding how humans die and when they are pronounced clinically dead.

I. How We Die

The cell is the basic unit of all living organisms. When cells die (cell necrosis) in humans,⁵ because of physical trauma or biological invasion (hypothermia, oxygen deprivation, immunological attack, or toxin exposure), the death of organs can follow if the patient goes untreated. “Successive organic failures (such as the liver and the kidneys) eventually reach a point at which brain death occurs and this is the point of no return . . . . [When the entire brain dies], “a person becomes truly dead.”⁶

The definition of death has changed substantially over the past century. Until the invention of the stethoscope in 1816, death was declared when a person stopped breathing. The invention of the stethoscope allowed physicians to add the absence of heart sounds as another criterion of death.

Scientific and technological advances, for example, the mid-twentieth-century development of the process of cardiopulmonary-cerebral resuscitation (CPR), the establishment of the Intensive Care Unit (ICU), and other medical technological advances, have forced definitional changes in the characterization of clinical death. With these developments in the emergency department, treatment of patients, cardiac arrest, and respiratory arrest could be overcome. However, “while medical science had figured out how to start a heart that had stopped, it had made no similar progress with the brain.”⁷

In a growing number of cases, a person was revived but was unresponsive. While breathing and heartbeat were restored through the use of CPR and intubation of the patient, there was unconsciousness, a deep, irreversible coma—the permanent vegetative state (PVS).

This was the new reality: a patient breathing and with a heartbeat but, because of near–brain death, without “meaningful contact with the environment,”⁸ led to monumental ethical, legal, and medical dilemmas.

By 1968 the international medical community determined that there was a second definition of death: “The death of an individual could be equated with the death of his or her brain and that ‘cerebral death’ could be diagnosed with reasonable certainty . . . . [This] was a most momentous development in the history of medicine and mankind.”⁹

In the twenty-first century, clinical death is when there is either (1) total brain death,¹⁰ or (2) when there is no heartbeat and no respiration. Either reality means that recovery to a conscious state is impossible. Total brain death is irreversible. It occurs when destruction of nerve cells—due to lack of oxygen (anoxia) or increased pressure inside the skull due to severe head trauma (1) in the brainstem (the center for reflex responses such as swallowing and respiration) as well as (2) in the cerebral cortex has taken place.¹¹

In 2011, there are four universally accepted criteria of total brain death: (1) unresponsive coma, (2) inability to breathe spontaneously, (3) absence of brain stem reflexes, and (4) absence of electrical activity of the brain.¹²

Just as the definition of death has evolved over the centuries, so too have the causes of death changed over the same time. The changing definitions of death occurred simultaneously with medical, scientific, and technological creations and breakthroughs. The changes in how humans die reflect the political and cultural dynamics that occur in society over time: from eating habits to the development of the public health institution to the length of the average life expectancy of the person.

II. The Etiology of Death in 1900

In 1900 the doctor had but a few basic tasks: deal with lethal diseases and disabilities, deliver live births, manage pain, and participate in the deathwatch along with family and friends. “[The doctor] performed these with meager success.”¹³

The doctor’s goal was fairly simple: do the best one could to care for the sick individual until death came to the patient. “Back then,” wrote one doctor about her predecessors, “although the weapons at their disposal were meager, they took more time to talk with the dying patient.”¹⁴

Treatment of the sick changed dramatically a few hundred years ago. During the nineteenth century, two schools of medical practice emerged that were to fundamentally change the way medicine was practiced.

In Paris, France, early in the century, the pathological anatomy movement, practiced in the hospital, began. To understand the dynamics of disease, doctors had to start cutting dead bodies open so that “obscurity will disappear.”¹⁵ In Germany, at about the same time

medical training focused primarily on laboratory medicine based on microscopy, vivisection, chemical investigations, and everything else measurable, weighable, and testable. The hospital was fine for observing but the laboratory was tailor made for experimenting.¹⁶

These two new medical schools of thought, combined, led to the transformation of the practice of medicine in the twentieth century. Through the nineteenth century, “disease called the shots. Persons were stricken by dangerous infections which in [those] pre-bacteriological days could not even be diagnosed with exactitude, let alone cured.” Individuals were plagued by infections, lethal to young and old alike. All the family doctor could do was to make comfortable the ill or dying patient until the patient expired. From the Greek and Roman era through the nineteenth century, a doctor had but a few options for treating the patient: “blood letting, sweating, purging, vomiting, and other methods of purging the body of bad humours.”¹⁷

Until the twentieth century, humans did not live very long. Our huntergatherer ancestors’ life expectancy was about twenty-five years. In 1700 in Great Britain, the second richest country in the world (after Denmark), life expectancy at birth was thirty-seven years of age. By 1820, however, life expectancy at birth in England was up to forty-one years of age. That figure remained stable for another eighty years.¹⁸

For centuries medicine was an atomized art, a hodgepodge of patient-doctor dealings. There were no clinical studies; there were no medical instruments that could assist the doctor in determining the nature of the illness; there were no regional or national medical institutions to share new medical information with colleagues. Remember, the stethoscope was not invented until the nineteenth century nor were there laboratories the doctor could send blood samples to for analysis. And high-quality precision microscopes were developed only in the last decades of the nineteenth century.

In 1900, the chance of a marriage lasting forty years was just one in three because of early mortality. And, quite different than today, death and postmortem events accompanying death took place in the home following a protracted deathbed watch. According to the National Center for Infectious Diseases, Centers for Disease Control and Prevention, the top ten causes of death in America were:

TABLE 1.1. Top 10 Causes of Death, 1900

---

Tuberculosis	11.3%
Pneumonia	10.2
Diarrhea	8.1
Heart Disease	8.0
Liver Disease	5.2
Injuries	5.1
Stroke	4.5
Cancer	3.7
Bronchitis	2.6
Diphtheria	2.3

---

Tuberculosis, called the “White Plague,” killed almost 150,000 Americans in 1900, “three times as many deaths as those from all types of cancers combined.” Since there were no antibiotics to treat the illness, “doctors could offer little treatment other than fresh air, sunshine, nutrition and bed rest.”¹⁹ Through the middle of the twentieth century, most deaths were due to infectious diseases. “And such deaths were relatively quick—a matter of days between the onset of a terminal illness and death . . . . Those deaths also came much earlier, often in what we call the prime of life.”

People who became debilitated or bedridden also did not last long. They developed a pneumonia and, since pneumonias couldn’t be effectively treated, they died. The threat of being bedridden for years and years did not loom large. Pneumonia—“the old man’s friend”—would reliably deliver a person from that peril.²⁰

Improving mortality numbers from 1900 to 2000 was initially due to improved nutrition and the elimination of the most pernicious of the industrial revolution’s characteristics (child labor, twelve-hour workdays, poor working conditions, extreme poverty of the workers), and the development of vaccines.²¹ Tuberculosis deaths fell by 80 percent “before there was any effective [medical] treatment for the disease. The same is true for other infectious diseases as well.”²²

The emergence—in the early twentieth century when the evils of industrialization and urbanization were at their brutal apex—of the state-developed public health service organizations at the local, state, and national levels was a key factor in addressing the many illnesses faced by the community.

Public health is a new field of medicine. Its practitioners—doctors, nurses, dentists, health educators, lab technicians, and others—focus on preventing disease, prolonging life, and the promotion of good community health practices by government agencies. The modern public health organization emerged in the nineteenth century in all nations going through the industrial revolution. The health problems that infected Americans, Germans, French, and English were very similar—smallpox, cholera, yellow fever, and typhus—and called for communitywide efforts in each nation to prevent and eradicate those contagious diseases that bred in the industrial slums. “The dramatic reduction of water- and food-borne diseases after that time—typhoid, cholera, dysentery, and non-respiratory tuberculosis—highlights the role of public health. From a mortality rate of 214 per 100,000 in 1900, these diseases were virtually eliminated in the U.S. by 1970.”²³

By the middle of the twentieth century, due to scientific and clinical developments, “many of these infectious and once deadly diseases were controlled or their morbidity and mortality substantially reduced. A...