The Mansion of Happiness (31 page)

Of the 137 seats in the courtroom, 100 were taken by reporters. (The week of the trial, the Quinlans received more than a thousand pieces of mail, not just letters but packages: jars of holy water and little boxes crammed with crucifixes.)
³⁰
No cameras were allowed, and although a reporter offered the Quinlans $100,000 for a photograph of their daughter in her hospital bed (“That was only a starting figure”), they refused, which is why the iconic image of the trial was Karen Ann Quinlan’s high school yearbook picture, a head shot, striking in its ordinariness, of a pale and unsmiling eighteen-year-old with long, dark hair.
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This story had everything: a pretty girl—“Sleeping Beauty,” the press called her—and a handsome young lawyer—the Quinlans’ thirty-year-old attorney,
Paul Armstrong, looked like he’d come straight out of the 1973 film
The Paper Chase
—and just the sort of edge-of-your-seat high-stakes medical drama television viewers tuned in for in prime time, especially
Emergency!
, NBC’s popular series about Los Angeles paramedics, which ran from 1972 to 1977. Reporters had started covering the story in September, when Armstrong filed papers asking the court to appoint Joseph Quinlan as his daughter’s guardian. “These poor people really need help,” Armstrong told a colleague. “The whole world needs help. It’s man against technology.”
³²

Intensive care units date only to the 1950s. Dying, which used to happen earlier in life, usually took place at home, and rarely involved an electrical cord. Only beginning in 1958 did the majority of American deaths take place in a hospital. When death moved away from the home, doctors, hospitals, and insurance companies took charge of the end of life.
³³
This change, when it came, came fast. By the 1960s, 75 percent of the dying spent at least eighty days in a hospital or nursing home during the last year of life.
³⁴
The longer we live, the longer we die.

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.
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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.”
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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.)
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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.
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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.
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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).
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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?”
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Those babies born without 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.
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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.
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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.
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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.
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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.