Love and Let Die

By NANCY GIBBS

Just as I choose a ship to sail in or a house to live in, so I choose a death for my passage from life.

-- Seneca (4 B.C.-A.D. 65)

Nancy Cruzan, now 32, has done nothing for the past seven years. She has not hugged her mother or gazed out the window or played with her nieces. She has neither laughed nor wept, her parents say, nor spoken a word. Since her car crashed on an icy night, she has lain so still for so long that her hands have curled into claws; nurses wedge napkins under her fingers to prevent the nails from piercing her wrists. "She would hate being like this," says her mother Joyce. "It took a long time to accept she wasn't getting better." If they chose, the Cruzans could slip into Nancy's room some night, disconnect her feeding tube, and face the consequences. But instead they have asked the U.S. Supreme Court for permission to end their daughter's life.

The Cruzan petition not only marks the first time the court has grappled with the agonizing "right to die" dilemma; it may well be the most wrenching medical case ever argued before the high bench. To begin with, Nancy is not dying. She could live 30 years just as she is. And since she is awake but unaware, most doctors agree that she is not suffering. But her parents are suffering, for it is they who live with her living death. They are so convinced Nancy would not want to go on this way that they have asked the courts for authorization to remove her feeding tube and "let her go." A lower-court judge gave that permission, but the Missouri Supreme Court, affirming "the sanctity of life," reversed the ruling. Now the U.S. high court must consider whether the federal Constitution's liberty guarantees, and the privacy rights they imply, include a right to be starved to death for mercy's sake.

Cases that tell people how to live their private lives arouse passionate controversy and are correspondingly difficult to settle, as the court found after its landmark 1973 Roe v. Wade decision legalizing abortion. There are 10,000 other patients like Cruzan in the U.S., and their families are waiting and watching. "I'm riding on the Cruzans' coattails," says St. Louis marketing consultant Pete Busalacchi, whose daughter Christine lies in the same Missouri rehabilitation center as Cruzan. "Maybe it would have been best if she had died that night," he says, referring to Christine's 1987 auto accident. "This has been a 34-month funeral." And like many Americans, Pete Busalacchi believes a family's private tragedy should not be a battleground for right-to-life interest groups, politicians or judges. "This is for individuals," he insists. "My suggestion is to take Nancy to the Supreme Court and wheel her in and ask, 'Do you want to live like this?' "

At the moment, most Americans seem to agree with Busalacchi. In a poll conducted last month for TIME/CNN by Yankelovich Clancy Shulman, 80% of those $ surveyed said decisions about ending the lives of terminally ill patients who cannot decide for themselves should be made by their families and doctors rather than lawmakers. If a patient is terminally ill and unconscious but has left instructions in a living will, 81% believe the doctor should be allowed to withdraw life-sustaining treatment; 57% believe it is all right for doctors in such cases to go even further and administer lethal injections or provide lethal pills.

Right-to-life advocates denounce what they call the "pro-death juggernaut," a shifting of public opinion on death and dying that is affecting not only private decisions but also public policy. Forty states and the District of Columbia have living-will laws (see box) that allow people to specify in advance what treatments they would find acceptable in their final days. In January, a New York State Supreme Court justice ruled that a family did not have to pay about two years' worth of $172-a-day fees for tending a comatose patient after they asked to have a feeding tube removed. That same month the Brooklyn district attorney decided not to press any charges against three grown children who had turned off their father's respirator, on the grounds that he was already brain dead.

Though statutes and court rulings may codify what is legal, they cannot ease the acute personal dilemmas of those who must deal directly with right-to-die situations. The issues that patients and families face are not only ethical but also medical, financial, legal and theological. In the last days of a ravaging disease, when the very technology that can save lives is merely prolonging death, how is a family to decide whether to stop the treatment? By adopting the abstract reasoning of jurists and ethicists weighing legal arguments about privacy and moral arguments about mercy? Through some private intuition about how much sorrow they can bear and how much courage they can summon? Or by some blunt utilitarian calculation about whether it is more important to keep Grandmother alive than to send Junior to college? In the end, individuals are left with an intricate puzzle about what is legal -- and what is right -- in making a decision.

It is not only families that must decide. Doctors are wondering when, in an era of untamed technology, they should stand back and let their patients die -- or even help death along. Economists are calculating a sort of social triage: at a time when infant mortality is scandalously high and public health - care is a shambles, does it make sense for taxpayers to spend tens of thousands of dollars a year to keep each unconscious patient alive? Lawmakers are struggling with how to draft laws carefully enough to protect life while respecting individual choice. Theologians are debating how sacred life can be if we take it upon ourselves to end it.

It is not surprising that physicians are on the front lines of the euthanasia debate, since they are the only participants for whom life-and- death decisions are as common as they are complex. They are most acutely conscious of the allocation of scarce resources -- time, money and their own energy -- among patients who might be cured and those who can only be sustained. And it is they who must offer explanations to the anxious families of patients whose lives are lost but not yet gone.

It is a basic premise of medicine that doctors should be healers and care givers; that they must work for their patients' well-being; that if they cannot cure, they should at least do no harm. When they took their Hippocratic oath, they promised, "I will give no deadly medicine to anyone if asked, nor suggest any such counsel . . ." But the plight of the incurably ill has challenged all these premises and left doctors and nurses deeply divided over their duties to the dying.

For many physicians, the actions they take often depend more on circumstance than on moral certainty. How far is the patient from death? How great is the pain? How clear the will? Does the patient just want to be left alone, or is he asking to be killed? The Cruzan case has raised the basic medical issue of whether doctors must continue to treat patients they cannot cure. In its amicus brief to the Supreme Court, the American Academy of Neurology argues that the doctor's duty is to continue treating unconscious patients as long as there is some chance of improvement, which Nancy Cruzan does not have. When hope is gone, the duty ends. But the Association of American Physicians and Surgeons argues precisely the opposite. "The obligation of the physician to the comatose, vegetative, or developmentally disabled patient does not depend upon the prospect for recovery," it wrote in its brief. "The physician must always act on behalf of the patient's well-being."

Taken to the extreme, this principle can mean ignoring or overriding the patient's express wishes. When Dax Cowart was critically burned in a propane- gas explosion near Henderson, Texas, he begged a passing farmer for a gun with which to kill himself. On his way to the hospital, he pleaded with the medic to let him die. For weeks his life hung by a thread. For more than a year, against his will, he endured excruciating treatment: his right eye and several fingers were removed, his left eye was sewn shut. His pain and his protests were unrelenting. One night he crawled out of bed to try to throw himself out a window, but was discovered and prevented.

That was 17 years ago. Cowart is now a law school graduate, married, living in Texas and managing his investments. Yet to this day he argues that doctors violated his right to choose not to be treated. "It doesn't take a genius to know that when you're in that amount of pain, you can either bear it or you can't," he says. "And I couldn't." He still resents the powerlessness of patients who are forced to live when they beg to die. "The physicians say that when a patient is in that much pain, he is not competent to make judgments about himself. It's the pain talking. And then when narcotics are given to subdue the pain, they say it's the narcotics talking. It's a no-win situation."

In Cowart's case, doctors acted paternalistically; they overruled his pleas in the belief that he would one day recover sufficiently to be grateful. But what if there were no chance of recovery: no law school, no wedding, no "life" down the road? Are doctors still obliged to fight on for their patients, even in a losing battle, even against their will? When a patient's time is short and his wishes are clear, many doctors these days would say no to life-at-all-costs heroics. Overtreatment of the terminally ill strikes physicians as both wasteful and inhumane. And patients living within sight of death often find themselves more concerned with the quality of the life that remains than with its quantity. Once reconciled to the inevitable, they want to die with dignity, not tethered to a battery of machines in an intensive- care unit like a laboratory specimen under glass.

When her cancer was diagnosed three years ago, Diana Nolan did not need much imagination or prophecy to know what lay ahead. The disease had killed both her parents. Surgeons removed part of her lung, but the cancer spread. Her physician next suggested that she try a potent chemotherapy but warned of the potential side effects -- hair loss, nausea and vomiting. "I wanted a full week to think and pray," she recalls. "I am a person who wants to have a part in the treatment. Let me know what my options are." In the end, she told her doctor she wanted only pain-killers. Her two grown sons supported her decision, but some friends urged that she battle on. "They said, 'Go for it at all costs,' but I had seen my father, my mother and several friends go through this." She preferred to stay at home to die, and summoned her Episcopal priest to administer unction. Nolan hopes she will leave a message for those considering decisions like hers. "I wish people wouldn't be frightened about knowing what they're up against. To have a part in my treatment has been so important. I'm part of the team too."

But when doctors cannot consult the patient directly, the issue becomes much harder. Karen Ann Quinlan's was the most celebrated right-to-die case before Cruzan's, and one that seems almost straightforward by comparison. In 1975, after she had been comatose for seven months, Quinlan's father went to the New Jersey Supreme Court to have her respirator turned off. The court agreed, and the U.S. Supreme Court declined to consider the case further. After the ruling, Quinlan lived nine more years breathing on her own. But Nancy Cruzan is not on a life-support system. Her parents are asking doctors to remove a feeding tube. If that petition is granted, Cruzan is sure to die within weeks, if not days.

When it is not high technology but rather basic care that is being withheld, doctors find themselves on shakier ground. Right-to-life proponents, including some physicians, argue that food and water, even supplied artificially, are not "medical treatment." They are the very least that human beings owe one another -- and that doctors owe their patients. To keep a heart beating after a brain is dead makes no sense. But Nancy Cruzan is not brain dead; like a baby, she survives on her own if fed.

This distinction can put families and health-care workers at odds, as Robert Hayner found when he went to court in Albany to have his unconscious Aunt Elsie's medication stopped and the feeding tube removed. "How can we be expected to provide care if the tube is pulled?" demanded staff members at her nursing home in a court deposition. "How can we stand by and watch her starve to death? We are her family," they said. "We care about her. We cannot walk down the hall knowing we are killing her."

If doctors and nurses are uncomfortable about withholding food and water, they are profoundly uneasy about actively assisting a suicide. Yet a seemingly / inexorable logic enters the picture: once it is acceptable to stand by and allow a patient to die slowly, why is it not more merciful to end life swiftly by lethal injection? What was once taboo is now openly discussed in academic journals: last March the New England Journal of Medicine published an article by twelve prominent physicians called "The Physician's Responsibility Toward Hopelessly Ill Patients." "It is difficult to answer such questions," the doctors wrote, "but all but two of us believe that it is not immoral for a physician to assist in the rational suicide of a terminally ill patient."

While such articles challenge doctors to rethink their professional roles, there is no agreement among them on this issue. Some physicians and ethicists warn that active euthanasia, if commonly practiced, could undermine the whole ethos of healing and the doctors' role as care givers. "A patient could never be totally confident that the doctor was coming to help him and not kill him," argues George Annas, director of the Law, Medicine & Ethics Program at Boston University's Schools of Medicine and Public Health.

Even hospice workers, who are more concerned with controlling pain than delaying death, are firmly opposed to the idea of loading a syringe with an overdose of morphine and handing it over. And doctors who spend all their time treating the incurably ill may still stop short of sanctioning euthanasia. "I don't want that word and my name in the same sentence," says Jeffrey Buckner, medical director for the Jacob Perlow Hospice of Beth Israel Medical Center in New York City. "If you are a physician and that charge is made against you, it sticks."

One of his patients, a 66-year-old writer suffering from a gastrointestinal cancer, came seeking help in committing suicide. He said he had the pills: 60 capsules, 200 mg each, of Seconal. But surgery left him with trouble swallowing, and he wondered if there was a better way to go. In this case it was not so much the physical pain of the cancer that plagued him; it was the mental burden of a lingering illness. "This long farewell performance gets to be a drag on people," the patient said. "It's just not the way you want to see yourself behaving. There's less dignity. Christ, everybody dies. Why does that always have to be the topic of conversation?" Dr. Buckner refused to help with a suicide. "It is reasonable to want to protect yourself from a horrible death," he explains. "But if good medical care is provided, and | good pain relief, then those fears can be greatly alleviated."

For active help with a suicide, most patients will have to look elsewhere, well outside the realm of patient care. The spread of AIDS, for instance, has prompted some right-to-die activists to offer support and counseling about pills and occasionally lethal injections to people with the virus. Pierre Ludington, 44, executive director of the American Association of Physicians for Human Rights, has tested HIV-positive: he is stockpiling pills to use when he is ready to go. "I get angry that society wants me to suffer in a hospital," he says. "All I'm doing is feeding its coffers."

Ludington has his own idea of a death with dignity. "I envision having a wonderful meal with friends. After they leave, I'll sit in front of the fire listening to Mozart, mix everything with brandy, sip it, and somebody will find me." He is an eloquent if unlikely spokesman for the allocation debate. "I feel that money belongs to a symphony," he says, "or for an impoverished museum to buy a painting that lasts. I won't last. I won't last. It's an unconscionable act to keep me going."

Purely economic arguments for euthanasia can sound brutally calculating. But as health-care costs rise annually at double and triple the rate of inflation, and as new technologies promise ever higher bills for ever older patients, the questions grow about how to ration medical care. In 1987 the Oregon legislature voted to deny organ transplants under its Medicaid program and to use that money instead for prenatal care. It is only a matter of time before the issue of continuing care for patients in a vegetative state comes under similar scrutiny.

Jurists and ethicists wrestle with the wider implications of measuring the value of life on a sliding scale. Once a society agrees that at some stage a life is no longer worth sustaining, patients are suddenly vulnerable. "We would begin with competent people making their own choice," warns Daniel Callahan, director of the Hastings Center and an authority on ethical issues in medicine, "but we would be too easily led into involuntary euthanasia -- either manipulating people into asking for suicide or actually doing it to them without their permission because they have become too burdensome or costly." The haunting precedent, of course, is the Nazi Holocaust, during which the chronically ill, then the socially unacceptable, and finally all non-Germans were viewed as expendable. In his stark essay "The Humane / Holocaust," Christian author Malcolm Muggeridge notes that "it took no more than three decades to transform a war crime into an act of compassion."

As the historic taboo about mercy killing gradually erodes, the courts and legislatures are struggling to be sure that the vulnerable are protected -- that, in the case of the severely disabled, the right to die not become a duty to die. They fear, for example, that medical care for newborn babies may come to depend on some cost-benefit analysis of their chance of living a "full healthy and active life." In the Baby Doe case in 1982, the Indiana courts allowed a couple to refuse surgery for their baby born with Down's syndrome and an incomplete esophagus; after six days, the baby starved to death. That emotional case raised the concern that some hospitals were not recommending even routine treatment for babies with Down's syndrome, spina bifida, cerebral palsy and other serious but treatable disabilities.

Both the medical and economic arguments for euthanasia are rejected by the powerful right-to-life movement, which commands hundreds of thousands of supporters nationwide. And as on the abortion issue, their stance against mercy killing is based on a theology that places the entire debate in a different context, that of a family of faith that tends most lovingly to its weakest members. The sanctity of a human existence, they argue, does not depend on its quality or its cost. What God gives only he can take away, and to usurp that right is an act of grave hubris. "Our Lord healed the sick, raised Lazarus from the dead, gave back sanity to the deranged," writes Muggeridge, "but never did He practice or envisage killing as part of the mercy that held possession of His heart."

But even within the community of faith there is a vast gray area. Though suffering and death underlie Judeo-Christian theology, basic compassion seems to dictate that a patient in terrible pain should be allowed to die. This is a proposition that the Roman Catholic Church appears to endorse. While both suicide and mercy killing are still strictly forbidden, the Vatican in 1980 declared that refusing treatment "is not equivalent to suicide; on the contrary, it should be considered as an acceptance of the human condition . . . or a desire not to impose excessive expenses on the family or community."

Even more active measures have their clerical champions. The late British Methodist clergyman Leslie Weatherhead rejected the idea that death should be left to God. "We do not leave birth to God," he observed. "We space births. We prevent births. We arrange births. Man should learn to become the lord of death as well as the master of birth." At the very least, argue some clerics, the state should stay out of the way. "The Missouri decision severs family ties," states a brief by the Evangelical Lutheran Church in America, referring to the ruling against the Cruzans, "by substituting the moral and religious judgment of the state for that of the person."

There is some irony here: the Evangelical Lutherans argue for a family's right to privacy, while the state of Missouri promotes the "sanctity of life." Yet the notion that life is sacred, and worthy of the state's protection, is embedded throughout the American legal tradition, right alongside the protection of individual liberty. When the two rights are at odds, the debates grow fierce. There are specific circumstances in which a society permits the intentional taking of life: in war, in self-defense, as punishment for a heinous crime. The Cruzan case raises the question of whether personal choice and great suffering, by either patients or their families, should join that set of circumstances.

Up until now the legal debate on the right to die has been wildly confused. If a car crashes on the George Washington Bridge and the driver is left comatose, his fate in court may depend on whether the ambulance takes him to New Jersey or New York. In New Jersey his family would probably be able to tell a hospital committee to stop life support. New York State's law is stricter, and without a living will the family would have to prove in court that the driver had left "clear and convincing evidence" that he would not want to be maintained by a machine.

But the laws are so unsettled that even in states where the statutes are strict, they may not necessarily be enforced. Judges and juries across the country have been remarkably lenient on family members who become mercy killers. Rudy Linares, a Chicago landscaper, held off hospital workers with a .357-cal. pistol while he unplugged his baby son's respirator. The 15- month-old boy died in his father's arms. Linares was charged with first- degree murder, but a Cook County grand jury refused to indict him. In fact, out of some 20 U.S. cases of "mercy killings" in the past 50 years, studied by Leonard Glantz of Boston University, only three defendants have been sentenced to jail.

The Cruzan case may finally provide the lower courts with some clear guidance in striking a fundamental balance between the rights of individuals and the duties of the state. If they chose, the Cruzans' lawyers could have suggested that Nancy's "life" is so faint that it does not meet a minimum standard of protection under the law; that, unaware as she is, she has none of those qualities and prospects and experiences that give life its value. But such an argument would require setting some line above which lives are protected, below which they are not. "In the public realm we need general rules that everyone in an institutional setting will follow," says Harvard political philosopher Robert Nozick. "And any line they draw will look arbitrary." Instead the case is being argued on the grounds of liberty and privacy.

The Cruzans' lawyers are asserting that Nancy's constitutional right to liberty has no meaning if it does not protect her from having a feeding tube surgically inserted in her stomach and being force-fed. Though she is unable to refuse the treatment, her parents could act on her behalf. Since the Karen Ann Quinlan case, 50 courts in 17 states have considered the right to have treatment withdrawn. Nearly all have come down on the side of privacy and limited the power of the government to dictate medical care. In a peculiar legal irony, many states make it illegal to assist in suicide; yet again and again, the courts have upheld the rights of conscious but paralyzed patients to have their ventilators and feeding tubes disconnected. In the most recent, highly publicized case, quadriplegic Larry James McAfee, still paralyzed five years after a motorcycle accident, petitioned the Georgia Supreme Court to allow him to disconnect his own ventilator using a special mouth-activated switch. Upholding McAfee's privacy rights, the court granted his petition. But McAfee subsequently decided not to end his life after all.

Unlike Georgia and many other states, however, Missouri has strong pro-life language in its statutes, which the state supreme court invoked in throwing out the lower-court decision. Though Cruzan had the right to refuse treatment, said the Missouri justices, her parents did not prove to the court that this is what she would have wanted. The "vague and unreliable" recollections by family and friends about Nancy's wishes were not deemed sufficient reason to stop feeding her. "The state's interest," wrote the judges, "is not in quality of life . . . Were quality of life at issue, all manner of handicaps might find the state seeking to terminate their lives. Instead, the state's interest is in life; that interest is unqualified."

Though no one questions the love of Cruzan's parents and their desire to abide by her wishes, what happens when a family's motives are not so clear? The state of Missouri is paying Cruzan's medical bills; but for other families the desire to hasten an inheritance or avoid crushing medical costs could add an ingredient of self-interest to a decision. The Rev. Harry Cole, a Presbyterian minister who faced the dilemma when his wife fell into a coma, admits the complexity of pressures. "If she were to go on that way, our family faced not only the incredible pain of watching her vegetate, but we also faced harsh practical realities." The cost of nursing-home care was likely to top $30,000 a year. "How could I continue to send three kids to college with the additional financial strain?"

The Cole case provides one more reason for courts to be careful about withdrawing life support: medicine is an uncertain science. When Cole's wife Jackie suffered a massive brain hemorrhage four years ago, the blood vessels in her brain ruptured, and she fell into a coma. "The vast majority of patients who have this kind of stroke die within a few hours," Dr. Tad Pula, the head of Maryland General Hospital's division of neurology, told Cole. But Jackie did not die right away; after several crises she stabilized into a vegetative state, which doctors said could last indefinitely. After talking with his children, Cole went to court to remove the respirator. But Baltimore Circuit Court Judge John Carroll Byrnes stayed his decision. Six days later, Jackie Cole woke up.

Today Jackie and Harry still appear on the talk-show circuit. She suffers some short-term memory loss, but otherwise is fully recovered. "When I look back at what the doctors said, I think, 'How wrong they were,' " she says. "What happened to me was truly miraculous." She does not blame Harry for wanting to pull the plug. "I know he loves me. I know he was never trying to do away with me." But the story does highlight the dilemma both judges and family members face. "I thought my decision was well planned, well thought out, responsible," says Cole. "It was what Jackie had asked me to do."

Such situations essentially confront families with a Hobson's choice: either they stand by and allow a loved one to waste away, or else they act to hasten death, with all the guilt and recrimination that entails. A state attorney accused 87-year-old Ruth Hoffmeister of wanting to starve her husband to death. Every evening for the past six years, Ruth has spoon-fed her husband Edward, who has Alzheimer's disease. When he began losing weight, their Pompano Beach, Fla., nursing home would have been obliged by state regulations to force-feed him through a tube. Ruth protested the bureaucratic intrusion. "There is nothing so important to an Alzheimer's patient," she insisted, "as a familiar touch and a familiar voice." She went to court to stop them, and won. "I don't know what the next step will be," she says. "After he had the disease for three years, he said to me, 'I am so tired of dying.' How could I ever justify keeping him alive?"

Although the wishes of patients and their families are often frustrated in court, lawmakers are not insensitive to their plight. Missouri Attorney General William Webster, who has led the legal fight against the Cruzans, may end up their unlikely ally. Webster realizes that few people have living wills, and that the Cruzans' ordeal has been torturous. "Without her case," he says, "I don't think people sitting in their living rooms would have to come face to face with the fact that we have thousands of patients across the country who are never going to recover. They are in this legal, medical nightmare -- this limbo."

Webster endorses new legislation that would try to find a careful resolution. He has already met stiff resistance from the Missouri legislature and has a hard fight ahead to change the laws. He proposes that families of patients who have been continuously unconscious for three or more years could petition for withdrawing treatment, including food and water. If they were unanimous that this is what the patient would want, and three independent physicians certified that the coma was irreversible, the patient would be allowed to die.

That would put the decision back in the families' hands and leave them with the ultimate, intimate reckoning -- a weighing of needs and fears and risks and possibilities. Long after the decision is made, the resolution may continue to haunt. But, in a sense, the abiding difficulty of these choices has a value of its own. It reflects the deep desire to do the right thing and respect the wishes of a loved one -- and also an unshakable sense that life is neither to be taken nor relinquished lightly, even in mercy's name.

With reporting by Priscilla Painton/New York and Elizabeth Taylor/Chicago