The Mansion of Happiness

by Jill Lepore

  As early as 1966, a journalist covering the topic could ask, “Should a new right—the right to die—be added to the triad of ‘inalienable rights’ to life, liberty and the pursuit of happiness?”35 Whether machines made to save and extend lives might end up inflicting a sort of torture had revealed itself as a difficult and painful question. More and more patients and their families struggled with doctors and hospitals and health insurance companies. In 1972, the U.S. Senate Committee on Aging held hearings on “death with dignity,” and two years later, ABC Television aired a documentary called The Right to Die.36 The Quinlans and their priest had been guided by “The Prolongation of Life,” a statement issued by Pope Pius XII in 1957; it obligated Catholics to use only ordinary efforts, rather than “extraordinary means,” to extend life.37 In 1975, the respirator that kept Karen Ann Quinlan alive seemed, to her parents, altogether extraordinary. Their daughter’s doctors did not agree. Nor would the court grant this argument. “I thought I’d just go to the clerk and talk to the judge and it would be settled,” Joseph Quinlan said.38 But on September 15, 1975, Judge Robert Muir, a forty-three-year-old Presbyterian, refused to name Quinlan as his daughter’s guardian, and instead appointed to that position a part-time public defender named Daniel Coburn.39 It was on the basis of Muir’s refusal that the case had come to trial.40

  There had been some question, in pretrial proceedings, of whether Karen Ann Quinlan was still among the living. The press wondered, too. “Is Karen Ann Quinlan alive or dead?” Time asked.41 Armstrong had thought he might be able to establish “brain death,” a state first described in a report issued in 1968 by the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Death, a committee that had consisted of ten doctors, one lawyer, one theologian, and one historian. “Under the existing legal and medical definitions of death recognized by the state of New Jersey,” Armstrong had insisted, “Karen Ann Quinlan is dead.”42

  Brain death—the cessation of brain function, as measured, more or less, by two flat electroencephalograms, or EEGs, over a period of twenty-four hours—was a legal term whose definition had been intended to standardize practices for transplant surgeons. The definition allowed surgeons to remove organs for transplant from patients whose hearts could be kept beating artificially, without fear of being charged with homicide or wrongful death. The first heart transplant was conducted in 1967; in 1968, doctors transplanted 108 hearts. Brain death, which is something between a medical fiction and a legal one, was intended to facilitate organ transplant; it had very little to do with the kind of decision the Quinlans faced.

  In 1975, only eight states had adopted laws defining brain death. New Jersey was not among them. By the time the trial began, Armstrong had agreed that Quinlan did not meet the criterion for “brain death”; her EEG was not flat. The chief reason she was still alive, six months after collapsing, was that such a criterion existed. Before that 1968 ad hoc committee set out formal guidelines, and before the rise of malpractice suits (which date to the 1960s), patients in what is termed a “persistent vegetative state” had been allowed to die. What was new wasn’t pulling the plug or not pulling the plug. What was new was the plug.43

  There were nine lawyers in the courtroom. “Not one of those lawyers looked much more than thirty,” Julia Quinlan thought. “So young, to be arguing about death.”44 Armstrong opened by making an argument about the afterlife. The Quinlans, he said, “believe that the earthly phase of Karen’s life has drawn to a close, that the time of life striving is over, and that further treatments merely hold her back from the realization and enjoyment of a better, more perfect life.” Calling on the language of the nascent right-to-die movement, Armstrong used the word “dignity” over and over again. “The answer to the tragedy of Karen Ann Quinlan,” he told the court, “is to be found in the love, faith and courage of her family who ask only that she be allowed to return to God with grace and dignity.” And, citing Griswold v. Connecticut and Roe v. Wade, he argued that the right to die fell under the right to privacy.45

  Coburn spoke next. He considered his job to be protecting Quinlan’s “constitutional right to life,” a phrase that echoed the central tenet of the pro-life movement. A chancery court, he insisted, ought not to be asked to entertain arguments about an afterlife. “This is not a Court of love,” said Coburn. “This is a Court of law.”46 After Coburn took his seat, New Jersey attorney general William Hyland approached the bench. “It is not for the executive or the judicial branches of government,” he argued, “to evaluate the quality and usefulness of life and, based upon that assessment, to determine that a citizen’s life is not worth preserving.”47 Hyland didn’t want the plug pulled, and, more than that, he didn’t want the court to make much of any sort of decision at all. He believed that doctors knew best.

  Next came Ralph Porzio, an attorney retained by the doctors who had refused to pull the plug. The “cornerstone of our Western culture,” Porzio began, is the “sanctity of life.” (That may be, but the phrase “sanctity of life” appeared in the Congressional Record only eight times before 1974, mostly during prayers.)48 He then proceeded to imply that the sanctity of life and the right to life were one and the same, reminding the court that, of the rights listed in the Declaration of Independence, life, liberty, and the pursuit of happiness, “the first is life.” And then he said it again: “The first is life.”49

  Karen Ann Quinlan wasn’t dead. But, terrifyingly, she wasn’t fully alive, either. Maybe she was no longer human: her brain wasn’t dead, but the parts of it that made her human were. Her sister, her mother, and one of her friends testified that she had always said she’d rather be dead than kept alive like this. Nearly all of the rest of the witnesses called to testify were doctors, asked to offer a prognosis. A chart of the human brain, three feet tall by five feet wide, was introduced as evidence and displayed in front of the judge’s bench.50 Much of the trial transcript reads like lecture notes from a neurobiology class. When asked to define “decortication,” one doctor said, “What it means is that the lesions, or the etiology, whatever it is that causes the condition, has affected certain parts of the neuraxis above the diencephalon,” whereupon his questioner confessed, “I lost you.”

  Lawyers and reporters alike attempted to describe Quinlan’s condition in plain English. Groping for words, many settled on one: “fetal.” One neurologist told the court that Quinlan’s starved and twisted body was “too grotesque, really, to describe in human terms like fetal,” but, with that exception, she was almost invariably described in just that way.51 She was curled up like a fetus in the womb, the respirator her umbilical cord. She was twenty-one and no longer a child and had fallen into a coma after taking Valium and drinking several gin and tonics, but no one ever talked about Quinlan as if she were an adult, or ever had been. She was a girl. She was Karen Ann. (One of her doctors told the court that his own daughter, a toddler, was also named Karen Ann. He couldn’t pull the plug. He just couldn’t.) And the legal question to be settled, after all, concerned guardianship: Who would take care of this girl? She wasn’t somebody’s wife, and she was no one’s mother: she was somebody’s daughter, and her parents wanted to end her life. In some meaningful way, Karen Ann Quinlan seemed, somehow, akin to a baby. Another neurologist compared her brain waves to those of an infant (to point out that they didn’t measure up).52 An attorney asked another medical expert to estimate Quinlan’s mental age: Was she like “a two-week-old infant, five-week-old infant, seven-year-old child, or something like that?” The doctor balked at the question’s premise—it was a clumsy and ill-considered analogy—but, when pressed, he reluctantly offered this gruesome reply: “The best way I can describe this would be to take the situation of an anencephalic monster. An anencephalic monster is an infant that’s born with no cerebral hemisphere.…If you take a child like this, in the dark, and you put a flashlight in back of the head, the light comes out the pupils. They have no brain. Okay?”53

  Those babies born witho
ut brains had lately been in the news. In October 1973, nine months after the Supreme Court handed down its decision in Roe v. Wade, pediatricians Raymond Duff and Alexander Campbell reported in the New England Journal of Medicine that anencephalic and other severely deformed or premature infants were being allowed to die in one of the country’s most prestigious hospitals. Between 1970 and 1972, Duff and Campbell reported, 43 of 299 deaths in the special care nursery at Yale–New Haven Hospital were the result of withholding or withdrawing treatment. Even with heroic measures, these babies were not likely to survive beyond a few hours or days. However agonizing the decision to let them die, Duff and Campbell stood by it.54

  That report, along with other highly publicized cases, fueled the growing pro-life movement. After Roe v. Wade, newly founded pro-life organizations across the country, including the National Right to Life Committee, set about searching for cases with which to challenge the ruling. NBC News reported that 58 percent of Americans, including 46 percent of Catholics, approved of legalizing abortion in the first trimester. Pro-life activists concentrated their efforts on putting a stop to late-term abortions. The month Duff and Campbell’s study was published, Kenneth Edelin, an obstetrician at Boston City Hospital, conducted an abortion on a seventeen-year-old girl who may have been as far along as twenty-four weeks. In April 1974, Edelin was indicted for manslaughter, largely through the efforts of a group called the Massachusetts Citizens for Life. The state argued that he had delivered a live male infant and killed him. In February 1975, seven months before Karen Ann Quinlan’s case went to court, Edelin was found guilty.55

  In the wake of Roe v. Wade, Duff and Campbell’s report, and Edelin’s conviction, Quinlan’s fate rested as much on ideas about abortion as about euthanasia. Historians have called In the Matter of Karen Quinlan the most significant medical case in American history.56 It looked that way even at the time, and as more time passes, it looks only more pivotal. To the press, it was too important a story not to report; it was a very easy story to exploit. It was high; it was low. It was tabloid; it was Plato. There was only one problem: it lacked a villain.57

  If Muir were to grant the Quinlans’ petition, Ralph Porzio warned the court, it would be “like turning on the gas chamber.” Enter the villain. Against the sanctity of life, against the first right listed in the Declaration of Independence, Porzio pitted Hitler. “Fresh in our minds are the Nazi atrocities.…Fresh in our minds are the Nuremberg Code.”58

  At the end of the Second World War, thirteen different trials were held in the Palace of Justice in Nuremberg, Germany. The medical trials, known popularly as the Doctors’ Trial but formally as U.S.A. v. Karl Brandt et al., began on December 9, 1946, two days before the United Nations moved to declare genocide a war crime. (The word “genocide” had been coined in 1943.) Of twenty-three defendants charged with war crimes for conducting experiments on human subjects, twenty were university-trained German physicians, once distinguished scientists. The charges against them included executing a state-run euthanasia program, under which they killed the elderly and the insane, the “feeble-minded” and the lame, crippled children and deformed babies; and conducting experiments on human subjects, during which they maimed, tortured, and murdered hundreds of thousands of Jews, Poles, and Russians, mostly in concentration camps. “A few of the survivors will appear in this courtroom,” said the chief prosecutor in his opening statement. “But most of these miserable victims were slaughtered outright or died in the course of the tortures to which they were subjected.” After 140 days of testimony, seven of the defendants were acquitted and sixteen convicted.

  The trial verdict included a statement about ethical standards for medical research, the Nuremberg Code. As important as the Nuremberg Code later became in the United States—it lay behind the founding, in the 1960s, of the field known as “bioethics”—the trials were virtually ignored in the 1940s. As the historian of medicine David Rothman has pointed out, the American press failed to report on the Nuremberg trials in 1946 and 1947 and paid almost no attention to the execution of seven of its convicted defendants in 1948. To the extent that Americans drew a lesson from Nuremberg, Rothman argues, it was that the government should not have a hand in either science or medicine. “And here,” Rothman writes, “the distinction between the Nazi government and all other governments was lost.”59

  The specter of Nazi medicine began to haunt the United States only in the 1960s. Doctors of Infamy, a much-redacted version of the Nuremberg Doctors’ Trial transcript, was translated from the German and published in New York in 1949, but it received very little attention until it was republished in London in 1962 as The Death Doctors.60 That republication followed the 1961 trial of Adolf Eichmann, who was hanged in 1962. In 1963, the New Yorker published Hannah Arendt’s Eichmann in Jerusalem, her report on the trial. It cast considerable attention on Nuremberg; Dr. Robert Servatius, Eichmann’s attorney, had also defended Karl Brandt in 1946. Servatius’s defense of Eichmann was more or less the same as his defense of Brandt: these men, implicated in the torture and slaughter of millions of people, were simply following orders. Eichmann was an ordinary civil servant; Brandt, an ordinary doctor. Arendt told of one exchange between Servatius and the court. Eichmann, Servatius insisted, was innocent of charges regarding “the collection of skeletons, sterilizations, killings by gas, and similar medical matters.” The judge interrupted him: “Dr. Servatius, I assume you made a slip of the tongue when you said that killing by gas was a medical matter.” Servatius: “It was indeed a medical matter, since it was prepared by physicians; it was a matter of killing, and killing, too, is a medical matter.”61

  In the 1960s, Nazi medical atrocities, long ignored by the American press, captured Americans’ attention, not least because Americans were, at just that moment, obsessed with death and doctors. When death moved to the hospital, it got scarier: so far from home; so many machines; so many strangers; instruments that poke and prod; bright lights, sleepless nights. The more successfully medicine has staved off death, the less well anyone, including and maybe especially doctors and scientists, has accepted dying. The year the New Yorker ran Eichmann in Jerusalem, Jessica Mitford published The American Way of Death. Some twelve hundred books about death and bereavement came out between 1935 and 1968; twelve hundred more—including Elisabeth Kübler-Ross’s 1969 On Death and Dying—were published between 1968 and 1973 alone. In 1974, Publishers Weekly announced, “Death is now selling books.”62

  It didn’t matter that Nuremberg was about Nazi Germany—evil is banal; it could happen here. If those German doctors had refused to test out the gas chamber in the 1930s, maybe many of the horrors of the twentieth century could have been averted. At the Quinlan trial, Porzio collapsed the distinction between Hitler’s Germany and the American government. “If the medical profession in Nazi Germany had shown more independence—if they had refused to partake in human experimentations,” Porzio told the court, “perhaps the Holocaust would not have been so great in terms of human lives and deformities.”63 That, Porzio argued, was why the doctors he was representing were unwilling to pull the plug. It wasn’t because the machines had gotten the upper hand. It wasn’t because those two doctors were afraid of being sued or charged with murder. No. They had refused to allow a severely brain-damaged and comatose woman with no hope of recovery to die … because they were not Eichmann. “We’re a strange, wonderful, sad country,” a Los Angeles Times reporter wrote. “We can’t decide how to live and we can’t decide how to die.”64

  The Quinlan trial adjourned on October 27, 1975. Muir promised to issue his ruling in two weeks.

  At seven o’clock in the morning on November 10, 1975, Father Thomas Trapasso held Mass at Our Lady of the Lake. Joseph and Julia Quinlan had breakfast at their house on Ryerson Road, where a copy of Leonardo da Vinci’s Last Supper hung on the wall above the dining room table.65 Then Joseph Quinlan drove, through a pelting rain, to Saint Clare’s, to visit his daughter, as he had done every day since she ha
d first collapsed, seven months before. At noon, he drove to the rectory to have lunch with his wife and their priest, surrounded by reporters. “It’s like eating in a storefront window,” said Trapasso. After lunch, they got into Trapasso’s car and drove to the Morris County Courthouse.66

  Television stations interrupted their programming to announce the decision.67 Muir denied Joseph Quinlan’s request. This is “a medical decision and not a judicial one,” Muir wrote. “There is no constitutional right to die.”68

  The Quinlans decided to appeal to the New Jersey Supreme Court, which heard the case in Trenton on January 26, 1976.69 On March 31, the justices issued a unanimous opinion, reversing the lower court. It held that, despite Quinlan’s incompetence, her right to refuse medical treatment was protected under the Fourteenth Amendment’s protection of liberty, and that her father could exercise that right on her behalf. Agreeing with Armstrong, the court also grounded its ruling in the right to privacy. Finally, it identified a role for the moral sense of the community.70 “If there is no reasonable possibility of Karen’s ever emerging from her present comatose condition to a cognitive, sapient state, the present life-support system may be withdrawn,” the justices ruled. Whether there was or wasn’t a reasonable possibility of this sort of recovery was to be decided in consultation with “the hospital ‘Ethics Committee’ or like body of the institution.”71

  The Quinlans had won but, as Armstrong said at the press conference, you couldn’t really call being granted permission to watch your daughter die more quickly a victory. In the wake of the ruling, the California legislature began debating a proposed Natural Death Act, which stated, “Every person has the right to die without prolongation of life by medical means.” The National Right to Life Committee lobbied against it; during one committee hearing, a testifier placed on the witness table a copy of The Rise and Fall of the Third Reich. The sponsor of the bill told the legislature, “Karen Quinlan haunts our dreams.”72