Time magazine called it “the most controversial trial since the 1925 Scopes evolution case.” In March 1950, more than one hundred reporters, photographers, and radio broadcasters from the United States and around the world descended on Manchester, New Hampshire, and filed roughly 1.6 million words while covering the trial of Dr. Hermann Sander, a forty-one-year-old physician from nearby Candia.Footnote 1 Indicted on a charge of killing one of his patients, a fifty-nine-year-old woman dying of cancer, Sander was the first physician in U.S. history to stand trial for mercy killing. His trial ended in an acquittal, but from an historical perspective the significance of Sander’s 1950 court appearance lay in its relevance to the country’s long-standing, divisive debate over euthanasia. This debate was raging as bitterly as ever on March 31, 2005, when in Pinellas Park, Florida, forty-four-year-old Terri Schiavo died after her feeding tube had been removed.
The Sander Trial and the Terri Schiavo saga serve as book ends to a chapter in the history of euthanasia in modern America that witnessed momentous changes to the nation’s moral values surrounding death and dying. Before the twentieth century, euthanasia—taken from the Greek word for “good death”—usually referred to the practice of making dying patients as comfortable and pain-free as possible with a view to preparing them for death. Yet in the period between the Gilded Age and the onset of the Cold War, “euthanasia” became identified with mercy killing, typically the act of a physician administering a lethal injection to a pain-wracked, dying patient who either does or does not request it. Support for the concept of euthanasia by lethal injection came from the growing perception that people were living longer and more and more were dying lingering deaths, as well as the publicity surrounding the increasing medical use of subcutaneous injections with syringes for the relief of pain.
Then, in the post–World War II era, the accepted definition of euthanasia broadened to include the withdrawal of life-prolonging medical treatment for dying adults or infants with severe defects, or physician-assisted suicide (PAS)—the act of providing a terminally ill patient with the drugs to kill himself or herself. These changes reflected sweeping shifts in personal values, as well as a host of demographic, scientific, medical, cultural, and socioeconomic trends, but they were also part and parcel of a protracted struggle waged by opposing constituencies that voiced profoundly different moral positions on the issues of death and dying. The upshot by the dawn of the twenty-first century was that euthanasia in its varying forms had become a highly emotional issue for partisan groups with firmly dissimilar moral viewpoints about the policy future of America.
This article argues that the history of America’s post–World War II debate over euthanasia is rooted in a paradox: on the one hand, the history of euthanasia is a good example of sociologist James Davison Hunter’s thesis that twentieth-century America was wracked by “culture wars,” a hotly-contested “struggle over national identity” whose impact has been felt by “virtually all of the major institutions of American society.” Hunter’s description of the “cleavages at the heart of the contemporary culture war”—“the impulse toward progressivism and the impulse toward orthodoxy”—closely resembles the moral fault line that divides the vocal adversaries in the conflict over euthanasia.Footnote 2
On the other hand—and in sharp contrast to hot-button moral issues such as abortion or same-sex marriage—euthanasia has seldom been a significant factor in electoral politics. For example, despite polling that suggests that support for various forms of euthanasia conforms closely to political party allegiance, U.S. candidates for political office are almost never asked their positions on euthanasia, as they often are on abortion.Footnote 3 While abortion can draw tens of thousands of Americans to protest marches, euthanasia demonstrations are few and far between and tend to be sparsely attended. As this article shows, the main reason euthanasia only sporadically becomes a political issue is that, despite decades of efforts to bring the topic of death “out of the closet” and encourage Americans to discuss it openly and more candidly, it continues to be viewed by most Americans as a highly private and family-centered experience that is shrouded in moral ambiguity. To the frustration of activists on both sides of the battle over euthanasia, most Americans refuse to view euthanasia in terms of outright victims and villains or in the stark moral terms favored by either Hunter’s “progressives” or the “orthodoxy” camp. A majority of Americans appear to believe that the courts, government, and elected officials rarely deserve a place at the nation’s bedsides and that the difficult decisions about death and dying should be left to patients, their families, and their caregivers. As the chairman of the American College of Physicians board of regents put it in 1990, “We should not be invaded by the state that wants to put a tube down our stomachs.”Footnote 4 Or pull the plug. Either one of these scenarios is tantamount to an “intrusion into the very heart of the family,” in the words of historian Peter Filene.Footnote 5 The same applies to PAS, which, though consistent with the popular theme of patient autonomy, also threatens to divide families by formalizing decisions about assistance in dying.
Thus, their many dissimilarities notwithstanding, euthanasia is similar to abortion in that the balance of power in the debate typically lies with those who favor family privacy. When, in 2000, Arizona senator and presidential hopeful John McCain was asked his position on abortion, he replied that it was “a private family matter . . . a family decision.”Footnote 6 He could easily have been talking about euthanasia.
Indeed, if history teaches moral activists anything, it is that when it comes to euthanasia Americans frequently equate the public use of strong moral language itself with the act of imposing values on other people. Whenever individuals such as Karen Ann Quinlan, “Baby Doe,” Jack Kevorkian, Derek Humphry, or Terri Schiavo make headlines and moral activists inside or outside government attempt to transform euthanasia into a political wedge issue, a form of “blowback” occurs that confirms that the adamant moral positions occupied by the culture warriors in the conflict over euthanasia are not shared by the majority of Americans. The lesson for activists on either side of the struggle over euthanasia is not that moral values do not affect politics—they patently do—but that broad public opinion imposes limits on what activists can accomplish in politics. America’s culture war over euthanasia shows how moral convictions repeatedly inspire activists to enter the political domain, but when they do they run up against a generalized reluctance to transform the private act of dying into a public, official process.
I
Over the ten days of Hermann Sander’s 1950 trial, reporters seemed more interested in the justice of prosecuting Sander than in the dying wishes of his patient, Abbie Borroto. This emphasis on the physician in the doctor-patient relationship and de-emphasis on Borroto’s actual intentions mirrored the tone of the debate over euthanasia prior to the Sander Trial, as well as the aims of the Euthanasia Society of America (ESA), the chief U.S. advocacy group for the legalization of mercy killing.Footnote 7 During the first half of the twentieth century when acts of mercy killing grabbed headlines, attention tended to focus on whether or not to charge those suspected of putting chronically ill people out of their misery, rather than on patients’ rights to choose the time, place, and manner of their deaths. To the ESA, a small, socially elite, Manhattan-based organization founded in 1938, the time had come for state legislatures to enact laws permitting licensed physicians to painlessly kill consenting and terminally ill patients. The chief—if not the only—aim of such legislation was to free physicians from legal penalties if they should do as Sander had done; in other words, to empower physicians more than patients. Under the ESA’s model legislation, euthanasia was considered to be more a public than a private matter and the state was expected to play an important role in the execution of the law.
The de-emphasis on patient’s wishes implied by the press coverage of the Sander Trial reflected the ESA’s moral position on the treatment of chronically ill people. To the ESA, the legalization of euthanasia was a progressive social cause that freed human beings from traditional mores that limited individual choice, such as the Christian belief that there was dignity in suffering. In this line of reasoning, permitting euthanasia emancipated people from mainstream moral taboos that prevented them from exercising their autonomy and developing their personalities to the fullest, even on their deathbeds. The ESA stance on human freedom was deeply informed by the moral precepts of Unitarianism, Humanism, and the Ethical Culture movement, many members of which joined the ESA.Footnote 8 For example, in 1973 the American Humanist Association, founded in 1941, stated that “Our customs and laws seem based on either the premise that death is the most terrible thing that can happen, regardless of circumstances, or the premise that our lives belong to a deity who demands every effort to postpone death. The latter, being a religious concept, has no place in the laws of a country having constitutional separation of church and state. Humanists do not place the responsibility for suffering upon a deity, but accept personal responsibility to correct the evils of our society. We value individual freedom, human rights.”Footnote 9 Such a moral position, highly akin to Hunter’s definition of “progressivism,” did not mean choice for choice’s sake: freeing human beings from long-standing moral and ethical beliefs supposedly enabled them to make the right choices, not any choice whatsoever. As far as the ESA leadership was concerned, the right choice for a pain-wracked patient such as Abbie Borroto was mercy killing. Thus, it is not surprising that the ESA hoped that eventually lawmakers would legalize not just voluntary euthanasia but also euthanasia for nonconsenting patients with disabilities. Nor is it surprising that there was a noticeable overlap in membership between the ESA and U.S. eugenics, birth control, and population control organizations. According to many ESA members, mercifully putting persons out of their misery, whether they were dying or living with disabilities, was humane, enlightened, and socially useful.Footnote 10
The “tremendous interest” in the Sander Trial meant that it was “absolutely the best case yet for our cause,” ESA secretary Eleanor Jones told the press in 1950. ESA founder Charles Francis Potter, an ex-Unitarian minister, lauded Sander as a man who would “be remembered by our children’s children as one of the greatest leaders of American medicine.”Footnote 11 Jones tried to organize a state chapter of the ESA in New Hampshire, while at the same time consulting with local clergymen and a state representative in the hopes of introducing a bill that would permit voluntary euthanasia according to specific guidelines.Footnote 12
Yet by the end of the 1950s, despite the ESA’s efforts, no state legislature had come close to passing a mercy-killing law. Elected officials did not pass such a statute because, as post–World War II polls showed, most Americans were not in favor of “mercy deaths under government supervision.”Footnote 13 The ESA’s message may also have fallen on deaf ears because it looked as if the group was “politicizing personal tragedy.”Footnote 14 As the following decades would show, other moral activists who used similar tactics to try to change attitudes and the laws surrounding end-of-life care would discover what the ESA learned the hard way: most Americans disliked activists who urged “government supervision” of intimate family matters.
Another reason for the ESA ‘s failures to shape policymaking was the stigma that hung over the word “euthanasia,” largely due to the highly publicized medical crimes against humanity committed by physicians and nurses in Nazi Germany’s program of medical murder which in the name of mercy killing led to the deaths of about two hundred thousand men, women, and children from starvation, gassing, shooting, or overdose.Footnote 15
A third reason for the ESA’s inability to win over public opinion was the moral authority of America’s churches. “As everybody knows,” a U.S. rabbi declared in 1903, America was “a creation of the Bible, particularly of the Old Testament.”Footnote 16 The churches tended to condemn mercy killing on the basis of the belief in “the absolute right of the innocent to life.” Christianity and Judaism held that life was a gift from God over which human beings only had “stewardship,” not control.Footnote 17 It was a sin to take anyone’s life to escape the suffering of this world. While some U.S. rabbis argued that the penalty for mercy killing should be softened to take motives into consideration, most rabbis believed that the commandment “Thou Shalt Not Kill” covered euthanasia.Footnote 18 “No one suffers save through the will of God,” a twentieth-century American Roman Catholic priest declared; “through suffering a man can beautify his character, atone for his sins, [and] take a special part in the sublime work of the Redemption.”Footnote 19 Moreover, permitting the taking of life to avoid pain opened the door to human rights injustices, argued many Christian and Jewish clergymen. Joseph V. Sullivan, author of Catholic Teaching on the Morality of Euthanasia (1949), warned that “once the American people depart so far from Christian tradition as to allow an innocent person to be put to death because he is a monstrosity or wills euthanasia, it is difficult to predict how much further this abuse of human life will go.”Footnote 20 This early version of the “slippery-slope” argument exerted an important influence over post–World War II bioethics and drew the support of non-Catholics as well, such as legal expert Yale Kamisar and psychiatrist Leo Alexander, an observer at the 1946–47 Nuremberg trials of Nazi doctors.Footnote 21
Likewise, physicians’ groups at the national and state levels were opposed to the legalization of mercy killing. The medical profession enjoyed a high reputation during the first half of the twentieth century, founded chiefly on a succession of life-saving discoveries, including penicillin, insulin for diabetes, and the Salk vaccine for polio.Footnote 22 Organized medicine wanted to be known for its ability to cure patients, not kill them. In any event, as was the case with birth control, practitioners tended to share the public’s moral values, notably its overall rejection of legalized euthanasia.Footnote 23
Yet even at a time when most Americans condemned mercy killing, they were also reluctant to apply strict moral standards to specific acts of euthanasia. For example, the budding evangelist Billy Graham asserted that the taking of life for any reason was murder, but he still described Sander as essentially “a good man. Many of our sympathies are with him. I believe he had nothing but love and mercy for the woman. But he was misdirected and misled in what he did.”Footnote 24 Graham’s words captured the fact that even strongly Christian believers in the United States hesitated to draw firm moral distinctions when it came to individual cases such as Hermann Sander’s.
II
While the ESA continued its futile efforts to convince lawmakers to pass a mercy-killing bill, by the 1960s changes in overall health, medical technology, and life expectancy were beginning to transform the broad public perception of death and dying in the United States. For the first time in history, most Americans could expect to die under medical care in a hospital or similar facility. Americans could also expect to live longer than their ancestors, thanks to improvements in nutrition and public health and the introduction of life-prolonging respirators, feeding machines, kidney dialysis, and organ-transplant surgery. Penicillin helped the elderly survive bouts of pneumonia, once dubbed “the old man’s friend” because of the way it speedily killed the aged. Armed with these new therapies physicians believed that they should use every means at their disposal to prevent death and improve health outcomes. Yet the irony of medical progress taught countless Americans that they were living longer only to suffer in old age from heart disease or degenerative and disabling conditions such as cancer and stroke.Footnote 25
One of the first signs of the graying of U.S. society was the 1958 formation of the American Association of Retired Persons (AARP), which quickly became a powerful lobby headquartered in Washington, D.C. Three years later the U.S. Senate created the Permanent Special Committee on Aging, whose hearings in 1971 chaired by Senator Frank Church (D-Idaho) raised the issue of “death with dignity,” which implied that modern medicine had transformed dying into an experience that more and more patients believed to be dehumanizing. Elected officials increasingly talked about the need to recognize “rights” for older Americans to “retire in health, honor [and] dignity.” The hospice movement, founded by British-born Cicely Saunders in the 1950s, reinforced the message that dying patients needed counselling and better pain management rather than aggressive care that failed to meet their emotional and spiritual needs. And in 1957, Pope Pius XII announced that it was no sin to let nature take its course in the case of unconscious dying patients who were being kept alive by respirators, as long as their prior wishes were known.Footnote 26
In the 1960s, fast-moving counter-cultural events dovetailed with the movement to augment patient rights. Alongside those who protested against the Vietnam War, women, African Americans, and gays marched in the streets to demand equal rights. Women activists denounced many of society’s institutions, notably organized medicine, which they accused of being insensitive to women’s needs and wishes. Through publications such as the best-selling Our Bodies, Ourselves (1973), and following on the heels of victories in the field of contraceptive and abortion rights, women activists advocated gender privacy, freedom, and empowerment.
The rise of the women’s health movement coincided with a decline in the reputation and authority of organized medicine in the 1970s. Doctors’ public esteem plunged from 72 percent to 57 percent between 1965 and 1973.Footnote 27 In his best-selling Medical Nemesis (1976) former Roman Catholic priest Ivan Illich taught that not only were numerous medical therapies useless and costly, but many were downright dangerous. For example, in 1974, a U.S. Senate investigation disclosed that more than 2.4 million unnecessary operations were performed yearly in America, causing 11,900 deaths and costing $3.9 billion. The viewpoint spread that generous doses of medicine were not actually making people any better, and that patients deserved more rights to informed consent and shared clinical decision-making. The mandate that had sustained organized medicine for the first half of the twentieth century—that the more medicine society received, the healthier it was, and that researchers, practitioners, hospitals, and medical schools should be free to run their own affairs as they saw fit—appeared to be faltering.Footnote 28 “Who ruled at the bedside” became the vital question that loomed over health care as the 1970s unfolded.Footnote 29
All these changes in favor of greater patient rights and control caught the ESA flat-footed. For years, ESA members had been advocating euthanasia in terms of a physician’s immunity from prosecution for hastening a patient’s death through lethal injection, or the state’s right to end the lives of handicapped persons whose care was costly and only prolonged lives of suffering and unproductivity. Activists had viewed themselves as opinion-makers, but by the 1970s more and more believed that public sentiment could not be manipulated and that the movement had much to learn by consulting with everyday Americans. What they were learning was that Americans increasingly defined dying as an intimate, patient-oriented, and family-centered experience. The debate over euthanasia was shifting from a doctor’s right to kill to a patient’s right to be left alone to die as he or she saw fit free from state intervention.
As a response to the shifting popular attitudes toward euthanasia, the ESA reconstituted itself as the Euthanasia Educational Fund (EEF) in 1967, the Euthanasia Educational Council (EEC) in 1972, and Concern for Dying (CFD) in 1978. A splinter group, the Society for the Right to Die (SRD), also was founded in 1974. Meanwhile, at this crossroads in the history of euthanasia, Chicago lawyer Luis Kutner introduced the “Living Will,” a written document specifying what life-sustaining medical procedures patients would not want if they became ill with no hope of recovery and were unable to communicate their wishes. The living will was a striking case of an idea whose time had come. Kutner, a co-founder of Amnesty International in 1961, was a good example of what James Davison Hunter called a “progressive” activist. In December 1967, he unveiled the idea of a living will at an ESA meeting. To Kutner, the living will articulated “the right of privacy.”Footnote 30
In 1969, the EEF drafted a model living-will form and within months all five thousand printed copies had been distributed. As news of the living will spread, the group’s office was swamped with requests for the document. By 1978, three million living wills had been distributed.Footnote 31 Public interest in living wills compelled forty-one states and the District of Columbia to enact legislation making living wills binding. By 1999, forty-nine states and the District of Columbia had laws that permitted a health-care agent to make medical decisions regarding life-sustaining treatment for an incapacitated patient. In the debates surrounding these legislative events, some medical ethicists contended that a living will failed to address all possible end-of-life situations, and others warned that the moral acceptance of living wills opened the door to involuntary types of euthanasia. Yet the living will caught on because it was only a form of “passive” euthanasia, it bolstered the notion of patient autonomy, and it helped to reassure the many Americans who had witnessed the prolonged suffering of terminally ill family members that their final wishes would be honored by hospitals and their doctors.
The massive publicity surrounding the fate of Karen Ann Quinlan, spanning oceans and continents, reinforced the importance of advance directives to protect patient autonomy, but it also underlined how her harrowing plight was very much a family issue. On the night of April 14, 1975, the twenty-one-year-old Quinlan fell into a coma at a New Jersey roadside bar, likely because she had been mixing drugs and alcohol. She was still in a coma three months later when her parents decided to disconnect her from the respirator that had been keeping her alive at a New Jersey hospital. The intense media coverage of the ensuing wrangle between the Quinlans and the hospital, which opposed their decision, far surpassed that of the Sander Trial, making her tragedy a landmark event in the history of euthanasia. Time and again, newspapers and magazines in the United States and around the world published Karen Ann’s familiar high school yearbook photo, often accompanied by compelling images of her distraught parents. The Quinlan saga, the media seemed to be saying, was a family misfortune. By the time the New Jersey Supreme Court ruled in the Quinlans’ favor on March 3, 1976, hospital staff had weaned Karen Ann off her respirator and she lived another nine years without regaining consciousness. The court’s ruling said that she enjoyed a constitutional right to privacy against intrusion by doctors, yet this was a right that could be asserted on her behalf by her parents as guardians.
By ruling in the Quinlans’ favor the New Jersey Supreme Court agreed that as parents they had the right to exercise a substituted judgment on behalf of their incapacitated daughter, even if experts were sometimes deeply divided over the legal reasoning that led the justices to their decision. The ruling popularized the idea of living wills, but it also seems to have expressed the consensus that Karen Ann’s fate should be decided by her parents in harmony with her wishes and their personal moral values (the Quinlans were Roman Catholics), not by the state and its institutions. Like all headline-grabbing euthanasia stories in twentieth-century U.S. history, the Karen Ann Quinlan drama suggested that the topic of euthanasia possessed a kaleidoscopic-like quality that defied moral absolutes and was best left up to families to resolve.Footnote 32
III
The success of the living will and the tidal wave of publicity surrounding the Karen Ann Quinlan story set the stage for America’s first major political showdown over euthanasia, one that bore eerie similarities to the later battle over the fate of Terri Schiavo. On April 15, 1982, “Baby Doe,” born nine days earlier in Bloomington, Indiana, with Down’s Syndrome and an obstructed esophagus, died of dehydration and pneumonia. After listening to conflicting advice from their doctors, Baby Doe’s parents had decided to forego life-saving surgery. Efforts to get the courts to take custody of the child and save his life were ongoing when the baby died.
What followed was a politicized firestorm of controversy over the rights of newborns with congenital disabilities to medical treatment, a side to euthanasia which had attracted little prior attention. “I don’t think there has been any area of public health policy that has stimulated such widespread discussion, such conflict—including lawsuits against the government—and such profound change as this area labeled ‘Baby Doe,’” Surgeon General of the United States C. Everett Koop declared on August 9, 1984.Footnote 33 Noted journalists George F. Will and Nat Hentoff condemned the failure to save Baby Doe’s life. The contrast between Baby Doe and Karen Ann Quinlan drew nationwide interest. As the Washington Post editorialized: “The Indiana Baby died not because he couldn’t sustain life without a million dollars worth of medical machinery, but because no one fed him.”Footnote 34 Unlike Karen Ann Quinlan, Baby Doe was not in a persistent vegetative state. Yet in one important respect, the Baby Doe and Karen Ann Quinlan stories were alike: both involved parents facing gut-wrenching, life-and-death decisions about their incapacitated children.
Once the news of Baby Doe’s death broke, it was not long before Americans learned that Baby Doe’s case was far from unique and that medical practitioners had known for years that staff at several hospitals around the country had withheld treatment from other children born with severe disabilities. According to two physicians, infants who died at their Yale–New Haven special-care nursery under these circumstances “eventually acquired the right to die.”Footnote 35
Baby Doe’s death galvanized social conservatives on and off Capitol Hill. In the wake of the 1973 U.S. Supreme Court Roe v. Wade ruling on abortion, the right-to-life movement had been launched and by the time of Baby Doe’s death was gaining considerable momentum. Initially dominated by Roman Catholics, by the close of the 1970s the right-to-life movement also included Evangelical Christians, who, appalled at the escalating tolerance of abortion, divorce, pornography, and homosexuality, and opposed to the Equal Rights Amendment, spoke of the need to restore “moral sanity” to U.S. politics.Footnote 36 Right-to-life activists increasingly linked euthanasia and abortion as crimes against “innocent human life.”Footnote 37 In 1980, Catholics United for the Faith denounced the moral values of modern America: “There is no God for this new morality, much less any divine law except the pleasures of the moment. Abortion is a form of killing engaged in to evade the consequences of sex. These people do not shrink even at killing in order to carry on the tenets of the sexual revolution, and the stage is then set to allow killing as the solution to other responsibilities. It is by this route that we arrive at the justification of legalized euthanasia.”Footnote 38 According to one opponent of the right-to-life movement, antiabortion campaigners “hire very attractive and able speakers. I wouldn’t mind if they would stick to the abortion issue, but at no extra expense they invariably sneak in the ‘euthanasia dig.’”Footnote 39
The right-to-life movement rejoiced in 1980 with the election of president Ronald Reagan, who openly declared his prolife sentiments. Once in office, Reagan disappointed many social conservatives, but his appointment of Dr. C. Everett Koop, an Evangelical Christian, as Surgeon General was meant as a reminder that he shared their antiabortion views. Koop, a career pediatric surgeon, was a longtime foe of abortion and champion of the rights of children with disabilities. He openly criticized the decision of the parents of Baby Doe to withhold life-saving surgery. As Koop summed up his position: “We ought to do things to give a person all the life to which he or she is entitled, but not to do anything to lengthen that person’s act of dying.” Koop’s views found congressional support from conservative Republican senators such as Orrin Hatch and Jesse Helms and member of the House of Representatives Henry Hyde, all of whom in May 1982 backed a resolution on handicapped children’s right to life.Footnote 40 The White House also waded into the controversy when two weeks after Baby Doe’s death Reagan ordered the secretary of Health and Human Services (HHS) to issue regulations to the doctors, nurses, and administrators in the country’s six thousand hospitals under section 504 of the Rehabilitation Act of 1973 prohibiting discrimination against handicapped people. The HHS regulations included four mandatory provisions, but the most controversial provision stated that any person who knew of infants being denied “food or customary medical care” was obliged to report them by using an around-the-clock, toll-free telephone number. Such a phone call could trigger an investigation by HHS personnel and consultants (dubbed “Baby Doe squads”).Footnote 41
To critics, the HHS regulations were a case of the Reagan administration “playing ‘right to life’ politics.”Footnote 42 In one sense, they were correct: the White House was trying to demonstrate that it remained committed to achieving the goals of its socially conservative “base,” even if, as David Courtwright argues, the Reagan administration was only trying to humor voters who voted steadfastly Republican anyway.Footnote 43 The courts later overturned the regulations for unduly restricting physicians’ medical judgment, prompting Koop to consult with proponents of parental choice and governmental regulation and come up with a modified set of guidelines, but they too did not stand up to legal scrutiny. In October 1984, Congress extended the definition of child abuse in federal law to include the denial of fluids, nutrition, and medically indicated treatment for infants with birth defects. Called the “Baby Doe Amendment,” it also required the states to implement procedures for reporting and investigating cases of neglect. The amendment culminated a two-year-long, often bitter debate about the rights of newborn babies, the reach of governmental authority, and the value of individual human life.Footnote 44
Against the backdrop of the acrimonious debate over the rights of infants with disabilities, on October 11, 1983, “Baby Jane Doe” was born on Long Island, New York, with spina bifida, hydrocephaly (excess fluid in the brain), and microcephaly (abnormally small head). When her parents refused to consent to surgery to close her exposed spinal column, a member of the hospital staff alerted a right-to-life attorney, who brought suit in New York courts to have the operation performed. The New York court of appeals rejected the suit, which it claimed constituted an “offensive” intrusion into “the very heart of a family circle.”Footnote 45 HHS then entered the fray by filing suit to obtain Baby Jane Doe’s medical records, but the U.S. district court found that the hospital in question was not in violation of Section 504 of the 1973 Rehabilitation Act and that the treatment plan was a case of parental decision-making, not discrimination.
The image of Koop speaking out to defend medical intervention in both Baby Doe cases was broadcast around the nation and made him a lightning rod for attacks from those who opposed his willingness to use governmental power to support “the principle of this country that every life is individually and uniquely sacred.” Koop did little to disguise his moral convictions, but he was far from a “pro-life zealot”; as a physician himself, he too was uneasy that the HHS regulations might erode clinical freedom. He was also troubled about where to draw the line between government and the family; as he asked: “Does the state have any business at all to step into a matter affecting a newborn child and go over the heads, so to speak, of the parents?”Footnote 46 Koop believed the state did, but by posing the question in the first place he showed how concerned he was about parental privacy. During his tenure as surgeon general (1982–89), he managed to build bridges with liberals and libertarians on other volatile health-care issues, such as sex education and Acquired Immune-Deficiency Syndrome (AIDS), but when he and other moral conservatives endorsed government power to extend equal protection to newborns, they ran up against the courts, the media, public opinion, the American Medical Association, the American Academy of Pediatrics, and officials within HHS itself.Footnote 47
The Wall Street Journal denounced “the Reagan administration’s medico-legal busybodies” and warned that “Big Brother Doe” was interfering in very personal family decisions.Footnote 48 “Who but parents can begin to interpret the meaning of a child born with handicaps?” a journalist asked. “The rest of us are strangers, and we ought to let the parents consult the doctors, reach their decisions, tend to their babies, grapple with their lives.” A widespread view was that the Reagan administration had overplayed its hand in the pursuit of right-to-life goals. More likely, the truth was that the White House believed it expedient to placate its base on a moral issue that was not as divisive as abortion. The bottom line was that by the end of the 1980s polls showed that as far as euthanasia was concerned, the right-to-life movement was not winning the battle for the hearts and minds of Americans. Support for PAS continued to climb, even if the public remained divided over the question of letting a “badly deformed” baby die by withholding surgery. When asked whether the family of a terminally ill, incompetent patient should be able to tell doctors to remove all life-support, 66 percent of Americans said yes after In re Quinlan; in 1985, that figure had jumped to 81 percent.Footnote 49 What stood out about most surveys was that when the question was framed to include family members as well as patients and their doctors in the decision-making process, Americans overwhelmingly approved of ending the lives of others living with incurable diseases.Footnote 50 In other words, Americans saw no overriding need to change the nation’s laws regarding end-of-life care for newborns. The Reagan administration’s attempt to do so had run smack up against America’s prevailing attitudes toward family privacy.
IV
As the right-to-life movement and the Christian Right went on the offensive during the Reagan presidency, activists such as British-born journalist Derek Humphry and Michigan pathologist Jack Kevorkian also mobilized in an effort to achieve what they viewed as the next victory in their campaign to advance the rights of Americans: the legalization of physician-assisted suicide. In doing so, however, these moral activists—who quickly became the most visible faces of the so-called right-to-die movement—learned by the end of the twentieth century the same lessons the right-to-life movement had learned in the 1980s: “politicizing personal tragedy” merely invites “blowback” from a public that prefers families to be off-limits when they have to wrestle with difficult moral questions surrounding end-of-life care.
The burgeoning interest in PAS in the 1980s and 1990s was mostly due to Derek Humphry (1930–), who in 1974 had helped his terminally ill first wife to die. Shortly thereafter, Humphry moved to the United States and with his second wife, Ann Wickett, founded the Hemlock Society in Santa Monica, California, in 1980, marking a major turning point in the history of America’s struggle over euthanasia.
Unlike the ESA and its successor groups, Hemlock was West Coast–based and more grass-roots in its membership. By the 1990s Hemlock had eighty-six local chapters claiming fifty-seven thousand members, most of whom were white, well educated, with above average incomes. Sixty-five percent were women. As one supporter observed, Hemlock’s stereotypical member was a “little old Ohio lady in tennis shoes.”Footnote 51 Issues of the group’s Hemlock Quarterly regularly contained advice on how to commit suicide (called “self-deliverance” by Humphry) painlessly, quickly, and bloodlessly. Officially, Hemlock advocated the legalization of PAS, but until that occurred it was dedicated to providing information on the best methods to kill oneself. Hemlock’s rallying cry in defense of suicide as a fundamental civil liberty echoed the mounting support for the concept of a “right to die with dignity.”
The slogan “death with dignity” took on additional significance in the 1980s due to the emergence of Acquired Immune Deficiency Syndrome (AIDS), which quickly became the leading killer of men between the ages of twenty-five and forty-four, notably homosexual males. It was difficult to imagine anything more undignified than death by AIDS. As researchers scrambled to find a cure, AIDS normally killed its victims slowly and in great pain, often with disfiguring skin lesions. Studies showed that physicians who treated AIDS sufferers helped them to die more than any other medical specialty. Media accounts multiplied of gay men who formed support groups to assist each other to commit suicide. When Hemlock’s membership doubled between 1988 and 1990, it was partly due to an influx of AIDS patients.Footnote 52 Thus, by the early 1990s, PAS as a moral cause had become popularly associated with gay rights advocacy. In 1996, an AIDS doctor remarked that “AIDS created an entire community that is aware of the issue [of PAS] and generally supportive of the right to die,” and a Berkeley physician noted in 1997 that “the gay community has pushed the envelope as far as it can possibly go on assisted suicide.” Larry Kramer, a prominent New York City gay playwright, author, and public-health advocate, played a key role in assembling the legal case that challenged New York State’s ban on assisted suicide in 1997. While many in the right-to-die movement and AIDS/Gay Rights advocacy groups cited the affinity between the two causes, each community seemed wary of being too closely aligned with the other. Right-to-die activists called the “stigma of AIDS” a “problem.” These comments mirrored the worry of right-to-die activists that PAS was increasingly identified with an underground practice of politicized gay men whose lifestyles had made them sick in the first place. “The problem with the AIDS folks,” one right-to-die advocate commented, “is that they bring this whole other issue about how they came to this point physically. . . . All I’m saying is that the opponents of helping people die seize on that.” Footnote 53 The growing conflation of AIDS and PAS in the popular mind constituted a jarring contrast with the experiences of families like the Quinlans for whom the public readily felt sympathy. Press reports of young gay men with AIDS hoarding and then ingesting lethal drugs to kill themselves captured a different form of moral activism that invited its own backlash.
As the 1980s drew to a close, the case of Nancy Cruzan reminded Americans of the fateful standoff between the state and the Quinlans.Footnote 54 In 1983, on a slippery Missouri road twenty-five-year-old Nancy Cruzan crashed her car only to survive with severe mental disabilities. When the Missouri Supreme Court refused to grant her parents’ request to withdraw Nancy’s feeding tube, the case went to the U.S. Supreme Court, the first time the court agreed to hear a right-to-die case. In 1990, the Court in a narrow 5–4 split confirmed that individuals had a right to refuse medical treatment when that refusal would likely result in death, but it also ruled that unless there is “clear and convincing” evidence of a patient’s wishes, states may intervene to overrule a family’s decision to discontinue treatment. (Missouri subsequently decided not to intervene and, after her feeding tube was removed, Nancy Cruzan died on December 6, 1990.) The uncommonly large number of separate opinions left Cruzan v. Missouri Director, Department of Health open to different interpretations. Yet the media tended to report the Cruzan story as a legal tussle pitting the Cruzans against a meddlesome state. The court decision, one California newspaper declared, was “a disaster for the Cruzans and for countless other families forced now to watch loved ones live as mindless shells sustained only by feeding tubes cut into their stomachs.” Families, not the state, should have “the last word,” The Virginian-Pilot and Ledger-Star of Norfolk editorialized, expressing a widely shared viewpoint.Footnote 55 The overall press narrative cast the Cruzans, like the Quinlans, as victims of a cruel and unjust effort to impose the government’s will on their families.
In contrast, the Society for the Right to Die (SRD), which had provided the Cruzans with counseling and legal assistance, interpreted the court’s decision to mean that there was no real difference between having the constitutional right to terminate unwanted life-sustaining treatment and a right to request physician aid-in-dying; in other words, that the courts had taken a giant step closer to recognition of a right to PAS. For the SRD, like the Hemlock Society, the times looked propitious for launching a major campaign to legalize PAS.
No one highlighted the issue of PAS with more fanfare than Jack Kevorkian, nicknamed “Doctor Death.” To Derek Humphry, Kevorkian (1928–2011), born in Pontiac, Michigan, was “the loose cannon of the euthanasia movement.”Footnote 56 Alongside his flamboyant and equally outspoken attorney, Geoffrey Fieger, Kevorkian brazenly defied Michigan’s law banning assisted suicide by helping more than forty-five people die between 1990 and 1997. Between 1994 and 1997, Kevorkian was tried four times for assisting a suicide; three times he was acquitted and a fourth resulted in a mistrial. Most of Kevorkian’s clients were women, were not in the terminal stages of their lives, and many endured no pain at all. As autopsies proved, some were not even physically sick. The first person Kevorkian helped to die was Janet Adkins, a fifty-four-year-old mother of three and English teacher from Oregon who had been diagnosed with Alzheimer’s disease. A week before dying, she had played tennis with one of her sons (and won). Then on June 4, 1990, Kevorkian hooked Adkins up to his “Mercitron machine” in the back of his rusting VW van parked outside Detroit. Her decision to choose assistance in dying revealed how PAS could split a family: her sons (and doctors) opposed her decision, while her husband, though with her at the end, had bought her a round-trip air ticket back to Oregon in the hopes she would change her mind.Footnote 57
The fact that on three occasions juries refused to convict Kevorkian indicated that public opinion was as divided over the moral righteousness of his actions as much as it had been over Hermann Sander. One of Kevorkian’s defenders, the editor of the New England Journal of Medicine Marcia Angell, announced in the New York Times that “the time is past when doctors and patients could reach such an understanding privately—when a doctor, say, might leave a lethal dose of sleeping pills on the bedside table. Society should examine the problem forthrightly and compassionately. At the very least, we should stop leaving families to carry the burden of caring for such patients in isolation.” Angell’s call for making decisions about terminally ill family members more transparent was couched in the language of “compassion,” but its thinly veiled support for Kevorkian and advocacy of changing the laws surrounding PAS suggested lifting the veil of privacy surrounding such decisions and involving the state in the care of terminally ill family members.
As the 1990s dawned, many like Angell believed momentum was on the side of the right-to-die movement. As opinion polls showed, the message that the right-to-die was the next freedom in a series of moral advances and human rights victories stretching back to the American Revolution itself appeared to be winning countless converts to the cause.Footnote 58
Right-to-die activists, smelling victory and impatient with the pace of change at the legislative level, decided to take the issue directly to voters in state ballot questions. In 1988, California activists failed to get the required number of signatures to have PAS placed on the ballot, but the experience of trying to mobilize grass-roots support in the Golden State came in handy when in 1991 a similar push to qualify for the ballot succeeded in Washington State.Footnote 59 In the end, voters in the Evergreen State refused to overturn the state’s 130-year-old ban on assisted suicide, but the struggle over Initiative-119 revealed how the moral battle lines were crystallizing and how the various constituencies and interest groups had aligned on either side of the debate. On one side were the state branch of the Catholic Conference and the Right-to-Life Committee. The American Medical Association declared its formal opposition to I-119 but donated no money to the campaign. Many eminent bioethicists fought against I-119.Footnote 60 On the pro-I-119 side were organized labor, the state Democratic Party, AIDS activists, Hemlock, and the Gray Panthers, a national organization formed in 1970 and best known for its work on behalf of the rights of older people. The Unitarian-Universalist Association, which in 1988 had become the first (and only) U.S. religious body to endorse the legalization of PAS, threw its support behind I-119 as well.Footnote 61
Spearheading the pro-I-119 drive in Washington State was the Unitarian minister Ralph Mero and his organization, Washington Citizens for Death with Dignity (WCDD). Mero and his allies called I-119 a “physician aid-in-dying” bill, drawing the criticism of people like Derek Humphry, who disliked using vague terminology to describe what was essentially an effort to permit assisted suicide. WCDD proclaimed I-119 an expansion of patient rights involving choice and privacy. To advocates of I-119, all opposition was “a very hysterical minority in our society, who can’t abide other people having control over their bodies.” The WCDD refrain that conflict over euthanasia came down to “a battle between rigid religionists and compassionate rationalists” was a good example of Hunter’s “progressivism,” and it resurfaced time and again over the next fifteen years as both sides recognized that “sound-bites” and catchy slogans were usually more effective than dispassionate, logical analysis.Footnote 62
WCDD’s opponents rallied late in the campaign, emerging victorious by a 54 to 46 percent margin. Voters turned out in record numbers for an off-year election. The news that Jack Kevorkian had just helped Janet Adkins commit suicide weakened support for I-119. More bad news for WCDD was on the way: Derek Humphry’s second wife, Ann Wickett, who had been battling cancer, killed herself and left an incriminating (and widely disseminated) note blaming Humphry for her death. The close association of the right-to-die movement with both Kevorkian and Humphry seriously undercut WCDD’s message that advocacy of PAS would expand human freedom. Equally significant was the perception among many Washington State voters that a PAS law would put pressure on family members to choose suicide to ease the financial burden or suffering of loved ones.Footnote 63 Thus, the law looked as if it might be an unwelcome intervention into family circles, anathema to an American public that tended to prefer that the state stay out of family decisions governing death and dying.
The battle over I-119 was followed by a similar, bitterly contested vote in California in 1992, which likewise ended in defeat for the PAS campaign. However, in 1994, by a 52–48 percent margin, Oregonians approved the Oregon Death with Dignity Act (ODDA), a statute permitting PAS under a set of guidelines and safeguards. ODDA was based on the view that the rights of terminally ill patients to refuse treatment were not fundamentally different than the choice of patients to hasten death with a lethal drug.Footnote 64
Oregon, the state with the lowest rate of church-going in the entire nation, was Hemlock’s home state and the group formed its own political action committee, Oregon Right to Die (ORTD), to lead the initiative, called Ballot Measure 16. Squaring off against ORTD was a coalition of Catholic, Mormon, Baptist, and Evangelical organizations, prompting ORTD to depict the debate over Measure 16 as a clash between religion and secular choice. One pro-Measure 16 radio ad warned that “there are just some people who believe they have a divine right to control other people’s lives, and they’d better back off because it’s none of their business.”Footnote 65 The pro-Measure 16 forces succeeded in convincing the 52 percent of Oregonians who voted for the measure that anti-Measure 16 activists sought to impose their own values on families wrestling with highly intimate decisions about death. Thus, both opponents and proponents of Measure 16 had realized that the key to victory lay in convincing voters that the other side believed private end-of-life decision-making was their “business.”
In the wake of the victory in Oregon the right-to-die movement looked to be on the verge of sweeping success. Barbara Coombs Lee, executive director of Compassion in Dying, a newly formed right-to-die group, hailed the Oregon vote as a “turning-point,” “a good indicator of where America is headed.”Footnote 66 When two federal circuit courts of appeal overturned Washington State’s and New York State’s bans on assisted suicide, and the case went to the U.S. Supreme Court, it appeared as if a Roe v. Wade–like decision on euthanasia was imminent. Yet in 1997, the U.S. Supreme Court unanimously overturned both Circuit Court decisions, ruling that there was no right to assistance in suicide protected by the Due Process clause of the Constitution, although individual states were free to enact their own PAS legislation. To PAS activists, the Court’s unanimous decision was disheartening: the choice they faced was to go through the laborious process of either lobbying state legislators to pass a PAS law or fighting a series of costly and exhausting ballot question contests. Either way, the road ahead looked lengthy and bumpy. Unless the Supreme Court reversed its ruling—an unlikely event in the foreseeable future—the culture war over euthanasia had to be fought state by state. Subsequent ballot-initiative defeats in Michigan (1998) and Maine (2000) confirmed that the struggle to legalize PAS was likely to be drawn out.
From the perspective of the right-to-die movement, the fall-out from “loose cannon” Jack Kevorkian’s activism, on the heels of the U.S. Supreme Court decision, was yet another discouraging setback. Kevorkian’s public image had already been tarnished by the revelation that he endorsed the mercy killing of both mentally competent and incompetent people, as well as medical experimentation on dying prisoners. Additionally, a new disabilities rights group, Not Dead Yet (NDY), had been founded in 1996 shortly after Kevorkian was acquitted of helping two women commit suicide. NDY once picketed Kevorkian’s own home in a Detroit suburb and was a familiar sight at meetings of right-to-die activists. Media depictions of NDY members, often in wheelchairs and loudly accusing Kevorkian of practicing “the ultimate form of discrimination” against people with disabilities, reinforced the perception that he and the right-to-die movement reduced rather than expanded choices for terminally ill people.Footnote 67
Then, on November 22, 1998, 22 million viewers of the CBS television show 60 Minutes tuned in to watch Kevorkian on videotape inject lethal chemicals into fifty-two-year-old Thomas Youk, diagnosed with amyotrophic lateral sclerosis (Lou Gehrig’s Disease). Michigan prosecutors charged Kevorkian and after a jury found him guilty of second-degree murder, he was sentenced to ten years in prison. By this stage in his career, Kevorkian had been shunned by most right-to-die activists, but he remained one of the most visible advocates of PAS, and so the grisly spectacle of Kevorkian killing Youk without any safeguards or guidelines triggered widespread criticism. An Associated Press poll found that 55 percent of Americans disagreed with the verdict (39 percent agreed), and other polls found that Americans did not exactly equate Kevorkian’s act with murder, but crucially no poll asked if Americans actually approved of him injecting lethal chemicals into Youk.Footnote 68 In any case, major media outlets backed the verdict, with the New York Times calling Kevorkian “reckless.”Footnote 69 The Washington Post’s Judy Mann wrote that the film of Kevorkian killing Youk compromised “an intensely private event.”Footnote 70 The president of the American Medical Association stated that “patients can be relieved that the guilty verdict against Dr. Jack Kevorkian helps protect them from those who would take their lives prematurely.”Footnote 71 Most key members of the right-to-die movement also distanced themselves from Kevorkian after his 60 Minutes appearance. Kevorkian’s defiant, in-your-face campaign for PAS was catastrophic from a public relations perspective: by the late 1990s, when Americans thought about PAS, they often saw Kevorkian’s gaunt features and harrowing eyes staring at them. Kevorkian’s slash-and-burn approach to euthanasia was hardly reassuring for the numerous American families facing the kind of tough decisions Susan Adkins or Thomas Youk had to face. By killing Youk, Kevorkian had made it easier for his opponents to convince Americans that Kevorkian was not a victim of unjust laws (as he had insisted all along) but an out-of-control extremist who took lives “prematurely.” Public opinion may have thought the verdict was harsh, but a majority were probably relieved that Kevorkian’s jail sentence ended his career as an activist. Kevorkian had challenged the fuzzy national consensus on euthanasia, and the right-to-die movement paid the price.
V
Kevorkian’s sentence, the U.S. Supreme Court decision, and the various state ballot measure outcomes suggested that at the dawn of the new millennium it was the right-to-die movement that had overplayed its hand in recent years. In the very least, it appeared as if a stalemate had been reached in America’s culture war over euthanasia. Polls confirmed that public opinion was divided over “the moral acceptability of doctor-assisted suicide.” In sharp contrast to polling data from the 1980s and 1990s, in 2003 more Americans actually opposed PAS than approved of it, a striking reversal of trends.Footnote 72 In 2006, Derek Humphry claimed that “the right-to-die movement in America is just paddling in the water. . . . It’s not getting anywhere.”Footnote 73 Additional bad news for right-to-die activists was the election of George W. Bush as president in 2000. Bush was openly pro-life, and in 2001 the White House went on the offensive when John Ashcroft, his attorney general, issued a new interpretation of the Controlled Substances Act (CSA), which would prohibit physicians from prescribing such substances under Oregon’s law. The culture war over euthanasia was about to take yet another twist.
After the State of Oregon filed a lawsuit against Ashcroft’s ruling, the case wound its way through the courts until January 17, 2006, when in Gonzales v. Oregon the U.S. Supreme Court ruled that Ashcroft had exceeded his authority back in 2001. The court’s majority decision mostly dealt with the legal issues surrounding the federal government’s power to use the CSA to control the prescription of narcotics, but to the attorney general’s opponents, such as ACLU Oregon, “intensely personal end-of-life decisions should be made by patients and their families in consultation with their doctors, rather than by the government.”Footnote 74 The White House’s disappointment with Gonzales v. Oregon was summed up by press secretary Scott McClellan who told the press: “The president remains fully committed to building a culture of life, a culture of life that is built on valuing life at all stages.”Footnote 75
The White House’s involvement in Gonzales v. Oregon certainly pleased the Republican Party’s moral conservatives, but the Bush administration’s attempt to emasculate a state initiative contrasted sharply with the party’s frequent support of state rights, notably in the case of pro-life efforts at the state level to mitigate the impact of Roe v. Wade. Meanwhile, the Terri Schiavo saga had unfolded in the nation’s courts, media, and political institutions, a further reminder of the White House’s self-professed commitment to a “culture of life.” In 1990, Terri Schiavo, then twenty-seven years old, had a cardiac arrest and until her death in 2005 survived in a persistent vegetative state in nursing homes with constant care, nourished and hydrated through tubes. In 1998, her husband, Michael Schiavo, petitioned the court to have her feeding tube removed, but Terri’s parents objected, and after the courts ruled against them, her parents went to the Florida state legislature, which passed a law giving Florida’s governor (and the U.S. president’s pro-life brother) Jeb Bush the authority to reinstate the feeding tube.
The Florida Supreme Court ruled the law unconstitutional and when the U.S. Supreme Court refused to hear an appeal, the case went back to the state legislature, whose Senate declined to approve a bill restoring the feeding tube.Footnote 76 Then, in what Time magazine called “a political circus,” Congress for the first time in its history convened a special emergency session during the Easter recess in 2005 to pass a bill giving Terri Schiavo’s parents a final avenue of appeal, and President Bush flew back from vacation at his Crawford, Texas, ranch to sign the bill.Footnote 77 Three days later, Bush issued a statement: “It should be our goal as a nation to build a culture of life, where all Americans are valued, welcomed, and protected—and that culture of life must extend to individuals with disabilities.”Footnote 78 Nonetheless, the courts ultimately rejected legal attempts to reconnect the feeding tube and Terri Schiavo died on March 31, 2005.
The Bush White House’s actions in Schiavo were the second time it had invoked the “culture of life” argument to intervene in state politics, a specter that troubled many within the Republican Party itself, to say nothing of moderate voters across the country. Critics also alleged that Schiavo was “an example of a more general politicization of bioethics,” the “hijack[ing]” by “special interests” of a family’s tragedy, a case of “litigation to achieve political ends.”Footnote 79 An ABC News poll confirmed that most Americans believed that Congress had overstepped its bounds in pursuit of political gain. It found that Americans favored removing Schiavo’s feeding tube by a 63–28 margin and by a 25-point edge opposed a law mandating federal review of her case.Footnote 80 A CBS poll reported similar results.Footnote 81 Those who opposed removing Terri Schiavo’s feeding tube were not helped by the visible presence of veteran antiabortion campaigner Randall Terry, who quickly emerged as a spokesman for Terri Schiavo’s parents. A fervent proponent of pro-life civil disobedience who frequently cited the example of civil rights pioneer Martin Luther King Jr. in the past, Terry—bullhorn in hand—had employed street tactics to harass women visiting abortion clinics. Terry often stated that he endorsed state activism in order to impose his moral views on other Americans: he threatened that if he were in power he would promptly execute abortion providers, and chided fellow conservatives for worrying about “the intrusion of our government into our lives, our families.” Terry’s view that women should submit to patriarchy because it was God’s will alienated countless women, including many pro-lifers.Footnote 82 Terry’s pro-life views could not have clashed more with those of Jack Kevorkian, but, like Kevorkian, Terry proved to be a much greater asset to his opponents than his followers. He and Kevorkian similarly courted the media, seemingly confident that the more coverage they received, the more righteous their respective causes would appear to audiences. In truth, however, they were walking public relations fiascos.Footnote 83
Just as had happened during the Baby Doe episodes in the 1980s, the perception spread during the Schiavo controversy that government had played partisan politics at the expense of personal tragedy, thus intervening unnecessarily in a family dispute. A sign that the pendulum had swung once again came in 2008, when voters in Washington State approved Ballot Initiative 1000, virtually identical to Oregon’s assisted suicide law, by a 58–42 margin, the second state to legalize PAS. The 2009 decision of the Montana Supreme Court that state law protected physicians from helping their patients to die, though it sidestepped the question of whether or not PAS was a right guaranteed under the state constitution, suggests that the courts may again be an arena in which the culture war over euthanasia will be fought.Footnote 84
Thus, the historical significance of Schiavo is that it represented yet another chapter in the back-and-forth culture war over euthanasia, during which Americans have been divided by a “political and social hostility rooted in different systems of moral understanding,” in James Davison Hunter’s words, “a fundamental disagreement over the sources of moral truth.” Such a polarization has been intensified by the “organizations and spokespeople who have an interest in promoting a particular position on a social issue,” as well as the media with their penchant for sensational reporting and gut-wrenching, human-interest stories.Footnote 85
At the dawn of the twenty-first century, it was also evident that this cleavage over moral values was crystallizing along partisan political lines. In 2005, the California Democratic Party threw its support behind a “Death with Dignity” law similar to Oregon’s.Footnote 86 When asked in 2007 if they found PAS “morally acceptable,” 39 percent of Republicans and 59 percent of Democrats nationally said yes. When a patient had a disease that could not be cured and was living in severe pain, 49 percent of Republicans and 62 percent of Democrats said doctors should be allowed by law to assist the patient to commit suicide voluntarily.Footnote 87
However, the key point is that as far as euthanasia is concerned “most Americans occupy a vast middle ground between the polarizing impulses,” in Hunter’s words.Footnote 88 Americans who occupy that “middle ground” may not be united by a coherent moral position, and their opinions about euthanasia often vary dramatically depending on the wording of polling questions. Nonetheless, history demonstrates what Americans do not favor about end-of-life care. They view euthanasia largely through the prism of the family and its overall welfare; they tend to oppose a role for government and the courts when families of people such as Terri Schiavo and the Baby Does have to grapple with decisions to withhold life-saving treatments. Most Americans do not seem to object when the lives of dying or severely disabled people are ended, as long as government encroachment is absent, families and caregivers are part of the decision-making process, and compassion appears to be the main motive. The consensus seems to be that decisions about death and dying for distraught families are difficult enough without “Uncle Sam” interfering.
That reality, and the fact that there has been no Roe v. Wade–like ruling on assisted suicide or mercy killing, means that right-to-die activists cannot expect a clear-cut victory on a national scale any time soon. Yet the same applies to their opponents in the “orthodoxy” camp, who have seen in the Baby Doe and Terri Schiavo controversies that the American public does not fully share their sweeping moral vision. Like their adversaries, they remain no less committed to the struggle to win public opinion, but they too have increasingly learned that their success in this endeavor depends heavily on a delicate balancing act, a public relations exercise that involves trying to persuade Americans of the righteousness of their moral vision without appearing to be imposing their values. Lurking over the entire debate over euthanasia has been the persistent and populist concern that politicians might take away the freedom of families to make their decisions. Indeed, by the early twenty-first century, the conflict over euthanasia had largely ceased being about a right to life or a right to die, but instead came down to the question: Who decides? Families or politicians? Individuals have rights about end-of-life care, but what about parents and other family members?
By the second decade of the twenty-first century, the best metaphor for the culture war over euthanasia may be a trench warfare–like stalemate, but the prospect of a breakout like the spurt of legalized gambling in the 1990s haunts the right-to-life movement. The right-to-die movement, by contrast, appears resigned to the daunting challenge of fighting a culture war of attrition for the legalization of PAS on a state-by-state basis, which promises to consume incalculable human time and energy, to say nothing of vast amounts of money. Even if polls indicate that Americans’ attitudes toward end-of-life decision-making have liberalized over the last half century, victories for euthanasia “progressives” have been as rare as victories for antiabortion pro-lifers since Roe v. Wade. Advance directives and living wills have enjoyed legal acceptance, but even the Vatican (and Pope Pius XII at that) has decreed that the withdrawal of futile medical treatment for dying people is no sin, as long as it is voluntary. Only two states have ratified PAS. A legal challenge to the ban on assisted suicide may again wind its way through the courts, but whether or not the U.S. Supreme Court will agree to hear it remains in doubt. It is far from certain that even a liberal Supreme Court will rule in favor of the constitutionality of assisted suicide. Progressives’ dream of a blitzkrieg-like breakthrough in the struggle over euthanasia, which burned brightly as recently as the mid-1990s, appears as far from realization as ever. The population may continue to age, concerns about the escalating costs of managed health care may grow, and the debate over death with dignity may rage for decades to come, but unless the nation’s moral consensus over end-of-life care budges substantially, the culture warfare over euthanasia will more closely resemble the battle of Verdun than El Alamein. As the Supreme Court acknowledged in Gonzales v. Oregon, its ruling would do little to end the “profound debate about the morality, legality, and practicality” of euthanasia.
