November of the Soul

by George Howe Colt

  An increasing number of people have realized that they don’t want their life to end this way, that there indeed may be fates worse than death. They propose that the quality of a life may be as important as its quantity. “The dignity starts with . . . choice,” says a character in Whose Life Is It Anyway?, a play by Brian Clark about an artist paralyzed from the neck down who asks to be released from the hospital and allowed to die. “Without it, it is degrading because technology has taken over from human will. My Lord, if I cannot be a man, I do not wish to be a medical achievement.” Joseph Fletcher wrote, “We are discovering that saving life is not always saving people. And that death may not always be an enemy to be fought off, but sometimes a friend to be helped and invited.” Some people suggest that in their use of life-support systems, doctors may be prolonging not life but death. It is commonplace to hear elderly people say, “I don’t fear death, but I fear dying.” One terminally ill seventy-eight-year-old, who was intubated and connected to life-support systems despite repeated requests to be left alone to die, switched off his own ventilator during the night. He left a final message for his attending physician: “Death is not the enemy, doctor. Inhumanity is.”

  Such scenes have become increasingly rare over the past few decades with the growing acceptance of passive euthanasia—a concept pithily and poetically described by nineteenth-century poet Arthur Hugh Clough, who wrote, “Thou shalt not kill; but need’st not strive / Officiously to keep alive.” It was a concept with which few Americans were familiar until 1975, when, a few weeks after turning twenty-one, a New Jersey woman named Karen Ann Quinlan swallowed a number of tranquilizers before drinking several gin and tonics with some friends at a local tavern, whereupon she fell to the floor, unconscious. Rushed to the hospital, she was given oxygen and put on a respirator, but she went into a coma.

  Her parents, devout Catholics, kept constant vigil over their daughter. Every examining doctor agreed that Karen had suffered irreversible brain damage and had no hope of recovery. After three months the Quinlans, with the support of their parish priest, asked the doctors to disconnect the respirator and let their daughter “pass into the hands of the Lord.” When the doctors refused, the Quinlans went to court, seeking permission to withdraw the respirator and allow their daughter to die “with grace and dignity.” No American court had ever authorized the withdrawal of life-support equipment. The Quinlans’ lawyer argued that Karen had a constitutional right to die and that keeping her alive “after the dignity, beauty, promise, and meaning of earthly life have vanished” constituted cruel and unusual punishment. A court-appointed guardian for Karen insisted that removal of the respirator would be an act of homicide and a violation of both the law and the medical code of ethics. A lawyer for the doctors claimed that no court could determine whether Karen might still recover.

  The superior court judge ruled against the Quinlans, but the New Jersey Supreme Court reversed the decision on appeal, observing that “ultimately, there comes a point at which the individual’s rights overcome the state’s interests.” On May 17, 1976, Karen’s respirator was turned off. However, she did not die. She lived in what neurologists call a “persistent vegetative state” in a New Jersey nursing home. Fed a combination of high-calorie nutrients and antibiotics through a nasogastric tube, her 70-pound body (she had weighed 120 before her coma) lay curled in a fetal position. Nurses turned her every two hours to prevent bedsores. Her father visited Karen each morning on his way to work; her mother visited several times a week, and a radio in her room played twenty-four hours a day. On her birthdays her family held a bedside mass, and cards arrived from all over the world. But Karen remained completely unaware of the outside world. She died of pneumonia in 1985, ten years after she had lapsed into a coma.

  The image of Quinlan in that irreversible coma imprinted itself onto the national consciousness, personalizing an issue that was easy to ignore in the abstract. Many people realized that they didn’t want to “end up like Karen Quinlan.” They argued that choices about end-of-life care should be made by the patient or the patient’s family rather than by doctors, signaling a move away from the paternalism, in which all-powerful physicians withheld information and made unilateral treatment decisions, that had dominated medicine for so long. In a 1950 Gallup poll, 36 percent of Americans believed doctors should be permitted to stop treatment at the request of a dying patient. By 1984 the figure had grown to 73 percent. Doctors got the message. That same year, in an article in the New England Journal of Medicine, a group of prominent physicians suggested guidelines for the treatment of hopelessly ill patients. “Basic to our considerations are two important precepts: the patient’s role in decision making is paramount, and a decrease in aggressive treatment of the hopelessly ill patient is advisable when such treatment would only prolong a difficult and uncomfortable process of dying.” About patients who, like Quinlan, are in a persistent vegetative state, they wrote, “It is morally justifiable to withhold antibiotics and artificial nutrition and hydration, as well as other forms of life-sustaining treatment, allowing the patient to die.” According to a study reported in the Journal of the American Medical Association in 1985, doctors issued DNR (do not resuscitate) orders three times as often as they had ten or twenty years earlier. A 1988 poll of the American Medical Association found that eight of ten members favored withdrawal of life-support systems from hopelessly ill or irreversibly comatose patients if the patients or their families requested it. For the most part, the Church grudgingly made its peace with passive euthanasia. Pope John Paul II, while condemning euthanasia in a 1980 Vatican declaration, said, “When inevitable death is imminent in spite of the means used, it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life.” (Twenty-five years later, as he lay dying of heart failure and septic shock in his simply furnished bedroom in the Vatican, John Paul II declined to return to the hospital for more aggressive treatment, choosing to let nature take its course.)

  The sea change in attitude following the Quinlan case was reflected in a series of court decisions that established the right of patients or their families to withdraw life-sustaining treatments. In January 1985, five months before Quinlan’s death, the New Jersey Supreme Court ruled that feeding tubes, like respirators, could be withdrawn from a terminally ill patient when requested by the patient or the patient’s guardian. In 1990, the Cruzan case—in which the family of a comatose twenty-five-year-old woman sought to have her feeding tube removed—reached the United States Supreme Court, the first right-to-die case to do so. Although its decision recognized a “constitutionally protected liberty interest in refusing unwanted medical treatment” and ruled that feeding tubes constitute medical treatment and could be withdrawn, the court essentially left such decisions up to individual states. Laws vary from state to state, however, and court rulings have been contradictory. Doctors have been sued, and in some cases arrested, for withdrawing life support, as well as for not withdrawing life support. With no clear guidance from the law, it is hardly surprising that physicians are apprehensive about making the life-and-death decisions they are confronted with daily. Most hospitals have hired staff lawyers to give legal counsel on right-to-die cases; many also have ethics committees that act as sounding boards and help review treatment decisions; a few employ in-house philosophers. The vast majority of cases never reach the courts. In these “negotiated deaths,” doctors and hospital administrators meet with the patient’s family to discuss comatose or terminally ill cases and whether, when, and how to withdraw life-support equipment—or to refrain from starting it in the first place. (Decisions must, however, frequently be made in emergency settings where extended consultation or philosophical deliberation is impossible, and many hospitals lack defined procedures for recording the wishes of dying patients.) The American Hospital Association estimates that 70 percent of the six thousand or so deaths that occur in this country each day are in some way time
d or arranged.

  In an attempt to ensure that their wishes concerning end-of-life care are respected, a growing number of Americans have signed living wills, in which they specify the conditions under which they would prefer not to be kept alive by life-sustaining technology, or a health care proxy, in which they assign another person to make their medical decisions in the event of incompetency. In 1991, in the wake of the Cruzan decision, the federal government enacted the Patient Self-Determination Act, which required that hospitals and nursing homes inform patients and their families of their right to sign such documents. By 1992, all fifty states had legalized an advance directive of some kind, theoretically enabling patients or their families to refuse the sort of protracted treatment Quinlan had received. Fewer than one in five Americans, however, have signed an advance directive, and those who have often find that such documents may be ignored in the hubbub of emergency rooms. A 1995 survey revealed that 66 percent of physicians believed there was nothing wrong with overriding a patient’s advance directive. In another survey, 70 percent of physicians said they would like to leave a living will with their own doctors, while 65 percent said they would not obey a living will with which they disagreed. “I’ve talked to physicians who say that if they are working in the emergency room and in the pocket of a patient who comes in they find a duly executed living will, they will take it out and throw it in the wastebasket,” says a philosophy professor who leads hospital discussion groups on medical ethics. Small wonder that a study of some nine thousand terminally ill patients found that those who had signed living wills, health-care proxies, or DNRs were just as likely to be resuscitated as those who hadn’t. In many cases, their doctors were unaware of these preferences; in some cases, they simply ignored them.

  That the issue of passive euthanasia is far from resolved became painfully apparent in 2005, when the case of Terri Schiavo reopened the national debate over when and how medical treatment can be withdrawn. A twenty-six-year-old insurance company clerk whose heart had stopped briefly one February night in 1990 because of an undiagnosed potassium deficiency, Schiavo had been in a persistent vegetative state for eight years when her husband went to court for permission to remove the feeding tube that kept her alive.

  In the Quinlan and Cruzan cases, family members were united in wanting life-sustaining treatment withdrawn. In the case of Terri Schiavo, however, the family was divided. Although his wife had left no written directive, Michael Schiavo maintained that Terri had told him several times that she would not want life-prolonging measures. He requested that her feeding tube be removed. Though doctors testified that their daughter had suffered irreversible brain damage and was incapable of thought or emotion, Terri Schiavo’s parents, Robert and Mary Schindler, insisted that she was responsive to their voices and might improve with therapy. They wanted the feeding tube kept in place. (A patient in a persistent vegetative state may appear to smile or grimace spontaneously, but neurologists say these are involuntary reflexes, not responses to specific stimuli.) The judge accepted Michael Schiavo’s testimony, ruled that Terri would not have wanted to be kept alive by artificial means, and, since Florida law gives spouses primacy in making decisions for incapacitated patients, ordered the feeding tube removed.

  Thus began what one medical ethicist described as “the most extensively litigated right-to-die case in the history of the United States,” a seven-year battle in which Schiavo’s parents fought to protect what they called their daughter’s right to life, while her husband fought to protect what he called his wife’s right to die. The Schindlers’ cause was taken up by religious conservatives and abortion opponents who saw the Schiavo case as part of the wider right-to-life battle. Michael Schiavo’s cause was taken up by right-to-die advocates who saw three decades of legal rulings in jeopardy.

  After years of litigation in Florida state courts, during which time Terri Schiavo’s feeding tube was ordered removed and reinserted twice, the case came to a boil in the spring of 2005, when, prodded by conservative lobbyists, Congress attempted to intervene, setting off a furious and unseemly rondo of sanctimonious sound bites (House majority leader Tom DeLay called removal of the feeding tube, variously, “murder,” “an act of medical terrorism,” and an “act of barbarism”); sub-rosa communiqués (a memo encouraging Senate Republicans to take up the cause noted “the pro-life base will be excited that the Senate is debating this important issue”); armchair doctoring (several members of Congress with medical degrees rendered their own diagnoses of Schiavo’s condition after viewing an edited, three-year-old videotape of her, whereupon a Democratic representative who is a psychiatrist accused them of “legislative malpractice”); and political grandstanding (in a backdoor strategy to block removal of the feeding tube through a law intended to protect people called to testify before Congress, a House committee issued a subpoena for Terri Schiavo).

  Some nine hundred miles south, outside Woodside Hospice House in Pinellas Park, Florida, where forty-one-year-old Terri Schiavo lay in her bed, unaware that she had become a political prize in the struggle between liberals and conservatives, the scene was no less histrionic. Protesters, many of them veterans of antiabortion and stem-cell-research battles, prayed, chanted, wore tape over their mouths printed with the word life, and brandished signs (MURDER IS LEGAL IN AMERICA; YOU WOULDN’T LET A DOG DIE OF THIRST; NEXT THEY COME FOR YOU). One man blew a ram’s horn; another paraded a figure of Jesus on the crucifix up and down the block on a trailer. There were scores of arrests, several death threats, an anonymous bomb threat, a last-minute appearance by Jesse Jackson in a white limousine, and a tent city of television crews to capture it all. It might have seemed fodder for a Preston Sturges screwball comedy had the case not been so tragic, and the stakes, on both a personal and a political level, so high. That it took place during the Easter season heightened the drama. (Some right-to-life advocates referred to the unfolding events as “The Passion of Terri.”) Meanwhile, across the country, a new generation of Americans, too young to remember Karen Ann Quinlan, were having dinner-table discussions about what they would want to happen if they ended up “like Terri Schiavo.” (According to one poll, 78 percent of Americans wouldn’t wish to be kept alive in her condition; in another, 67 percent thought elected officials were trying to keep Schiavo alive more for political gain than from concern for her or for the principles involved.)

  Despite Congress’s attempts to subvert the judicial process, a Florida circuit court judge, saying Congress had no jurisdiction in the matter, once again ordered the feeding tube removed. Another appeal to the Supreme Court was rejected. On March 18, the feeding tube was removed for the third time.

  But what one congressman called “a national political farce” was not yet over. Although the case had already been heard by nineteen judges in six courts and had been appealed unsuccessfully to the Supreme Court three times, Republican congressional leaders hastily called Congress back from its two-week Easter recess for an emergency session in which they rushed through a special bill allowing “any parent of Theresa Marie Schiavo” to sue in federal court to keep her alive. (President Bush’s return from his Texas ranch to sign the bill was the first time in five years he had interrupted a vacation to return to the capital.) The Palm Sunday Compromise, as its supporters called it, outraged even some conservatives, who accused Congress of violating a cornerstone of constitutional philosophy by interfering with the ruling of a state court. After another legal flurry, however, the federal appeals court in Atlanta refused to order the tube reinserted. Once again, the Supreme Court declined to intervene. On the morning of March 31, 2005, nearly two weeks after the removal of her feeding tube, Terri Schiavo died. By then, the only thing on which it seemed all could agree was that nearly thirty years after the Karen Ann Quinlan case, Americans remained deeply conflicted about right-to-die issues.

  The furor over Terri Schiavo surprised most right-to-die advocates, because these days, doctors routinely practice passive euthanasia in ways that go bey
ond withdrawal of life-support systems. They may call for a DNR or a “no code” order, in which case a dying patient will not be given “heroic measures.” They may hasten the death of a terminally ill patient by not treating an infection or by failing to prescribe antibiotics for pneumonia. Some doctors go further, into an even more hazy legal area. They may put a bottle of pills on the table of a terminally ill patient who has asked to die. “Take two if you can’t sleep,” they may say. “But don’t take them all, or they will kill you.” Some doctors may increase a patient’s intravenous dose of morphine until he stops breathing. Or they may practice “terminal sedation”—administering enough painkilling drugs to push suffering patients into unconsciousness, withholding nutrition and hydration until death occurs. The late Christiaan Barnard, the South African surgeon who in 1967 performed the first successful heart transplant, admitted that he had practiced passive euthanasia in a variety of forms for many years. “I have learned from my life in medicine that death is not always an enemy,” he wrote in Good Life/Good Death. “Often it is good medical treatment. Often it achieves what medicine cannot achieve—it stops suffering.” Many patients, however—especially in the age of managed care, which limits their choice of providers and often forces them to switch from doctor to doctor—do not have the kind of intimate relationship with their physician that allows these issues to be raised. And by the time a patient needs end-of-life care, the “family doctor” has usually been replaced by a team of specialists, often strangers to the patient.