Debate on the Boundary of Life

By Susan Tifft

Medical miracles and the patient's right to die

Siamese twins, joined at the waist, with a common pelvis, were born in Danville, Ill., on May 5, 1981. The pair had three legs. The parents and doctor allegedly ordered all feeding stopped. They were charged with attempted murder, though the charges were eventually dismissed.

Former Schoolteacher Peter Cinque, 41, had lost his sight and both his legs to diabetes. He wanted to stop dialysis and other life-sustaining treatment. The hospital refused. On Oct. 22,1982, a New York judge upheld Cinque's right to stop treatment. By then in a coma, he was disconnected from a respirator that day and died, alone, before his family could get to his bedside.

An elderly dying patient seemed to have slipped from life when Dr. George Dunlop, then a surgical intern at Cincinnati General Hospital, stepped in and managed to revive him. The patient, unable to speak, motioned for a pencil and wrote, unforgettably to Dr. Dunlop, "Why did you do this?"

No person's death is like another's, but these cases are not rarities. Four out of five people now die in a hospital or nursing home (only half did 35 years ago), and "most don't die unexpectedly," says University of Wisconsin Pediatrician Norman Post. "They die as a result of a very conscious decision by doctors, along with the patient's family, to withhold treatment." The question becomes not how to save a life but when to let it go. Aided by artificial and transplanted organs and a jungle gym of gadgetry, doctors can now stave off death for long periods. The blessings of science have brought the curse of choices that raise confounding ethical and legal uncertainties. Is life, however tenuous or painful, always preferable to death? At what point should doctors stop treating terminally ill or permanently unconscious patients? Which forms of treatment or care can properly be denied to a patient? May the cost in money and resources be considered? Moreover, who has the right to make these decisions? "We are facing a moral vacuum," says Dr. Alexander Leaf of Harvard Medical School. "There are enormous disparities in views on whether you withhold certain therapies or do everything possible to keep a person 'alive.' "

Among major faiths, there is general agreement that it is morally permissible to allow a person to die if therapy would not lead to recovery. Views diverge, however, when this principle is applied to specific situations. The Roman Catholic Church has the most explicit position. The Vatican's 1980 declaration on euthanasia clearly permits an end to treatment that would only "secure a precarious and burdensome prolongation of life" when death is imminent. Says Rabbi Seymour Siegel of New York's Jewish Theological Seminary: "It is the individual's duty to live as long as he can, but if a person is destined to die soon, there is no obligation to prevent that death from happening."

Last month the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research offered its recommendations on these questions in a 255-page report, "Deciding to Forgo Life-Sustaining Treatment." The study, the seventh published by the prestigious panel of doctors, lawyers, theologians and others since it started work three years ago, concludes that a competent patient, one who is able to understand treatment choices and their consequences, has the all-but-absolute right to decide his own fate. Declares Dr. Joanne Lynn, a geriatrician and principal author of the report: "An adult person of sound mind has authority over his own body." When a person is incompetent, says the report, a surrogate, usually a family member, should be named to make treatment decisions. The commission urges courts and legislatures for the most part to stay away. "The resolution of these issues," says Dr. Lynn, "should be left to people on the scene--the patients, their families and health-care professionals."

The only force of the report's findings will come in their contribution to the debate that already swirls around almost every aspect of this subject. The one issue involved on which there is a semblance of agreement is the definition of death. Traditionally, a person had been considered medically and legally dead when his heart and lungs stopped. Today, however, machines can prolong these visible signs of life even after the brain has ceased to function. The standards for determining "brain death," set forth by a 1968 Harvard Medical School report on irreversible coma, are now widely accepted among medical professionals. Thirty-one states and the District of Columbia have brain-death statutes.

Current laws also provide that a rational patient can make his own healthcare decisions in most cases. "A competent adult has the right to refuse medical treatment even if the ultimate result is death," writes Milwaukee Attorney Robyn Shapiro in the Harvard Journal on Legislation. "This right is grounded in the doctrine of informed consent and in the constitutional right to privacy." But as the case of Peter Cinque demonstrates, medical institutions do not always automatically honor a patient's wishes, often for fear of a malpractice suit by surviving relatives or a belief that the patient does not know best. Doctors who treat patients against their will, however, may be liable for battery or other charges.

It is a far more complicated matter when the patient is mentally ill, retarded, senile, brain damaged or comatose. Technically, he has the same rights as a competent patient. In practice, someone else must try to replicate the decision the patient would make were he able to speak for himself. This notion of "substituted judgment" was established judicially for an incompetent patient by the New Jersey Supreme Court in the 1976 landmark case of Karen Ann Quinlan, who had lapsed into an irreversible coma the year before. Pressed by her parents, the court ruled that her respirator could be removed if the Quinlans, her doctors and a hospital review committee agreed.

The New Jersey justices may consider yet another potential landmark case. In November 1982 Thomas Whittemore requested the removal of a nasal feeding tube from his aunt, Claire Conroy, then 83, who was in a New Jersey hospital unable to speak or move and suffering from advanced heart disease. Her doctor refused to do it. "He said to me, 'Mr. Whittemore, you can't play God.' And I said, 'What are you doing? God's will is that this woman is ready to go. You're the one holding her back.' " Whittemore sought and received court permission to stop the feeding. "There is a point," wrote Superior Court Judge Reginald Stanton, "at which a patient, or someone acting for him if he is incompetent, has the right to refuse treatment. That point is reached when intellectual functioning is permanently reduced to a very primitive level or when pain has become unbearable and unrelievable." Conroy died in February, though her tube was never removed because an appeal was to have been heard in May.

The Conroy case raises the issue not only of when someone should die but how. Is denying food and water to a patient, of any age, the logical extension of ending life-sustaining treatment? Yes, says University of Texas Law Professor John Robertson, author of the new American Civil

Liberties Union handbook The Rights of the Critically Ill. "If you can legally and ethically take a respirator from a patient, the decision has already been made to let the patient die. Why, then, is it not justifiable to remove food?"

To many, though, there is a difference, if only one of sensibility. When Karen Ann Quinlan was taken off the respirator, her family fully expected her to die. She did not. Fed through a nasogastric tube, Quinlan, who turned 29 last week, continues to exist in a vegetative state in a nursing home. "She can hear me when I talk to her, and she can hear music. But no connection takes place inside," says Quinlan's mother Julia, who usually visits her daily. Though her daughter's recovery is impossible, she says, "We decided that removing the feeding tube was simply something we did not want to do."

The decision not to feed, or treat, an infant is an even more poignant one, and it is often made quietly for some of the 362,000 seriously ill infants born each year in the U.S. One recent case was far from quiet, however, and the result may change some pediatric practices. At his birth last April in Bloomington, Ind., "Infant Doe" had Down's syndrome, a defect associated with mental retardation, and a deformed esophagus that prevented him from eating and drinking normally. The parents, acting for their child, decided against repairing the esophagus. The effect would have been to starve the child to death, but the hospital sought a judicial order to allow the operation. The parents won in the lower courts, and the Indiana Supreme Court refused to intervene. While state officials raced to Washington to petition the U.S. Supreme Court, the week-old infant died.

When accounts of the case appeared in the press, the public reacted with horror. Pro-life groups lobbied President Reagan personally to prevent similar deaths. The result: new federal regulations seeking to prevent hospitals from denying food or care to handicapped infants. Effective last month, hospitals receiving federal funds must prominently post a notice announcing the federal policy and listing a confidential toll-free "hot line" to encourage reports of violations. The President's Commission denounces the rule, claiming it "adds further uncertainty to an already complex situation." Others contend that at best, it is inconsistent policymaking. "The Administration cannot cut programs for the handicapped," says Dr. Anne Fletcher, nursery director at Children's Hospital in Washington, "and at the same time want these babies saved." A lawsuit has been filed to block the rules. But already the first hot-line calls have come in, leading to an investigation of at least one false alarm involving ten children in a Tennessee hospital.

The President's Commission believes that Down's syndrome babies like Infant Doe are entitled to every medical effort because they can live, though it may be a limited life. Moreover, courts in the past have overruled some parents, such as Jehovah's Witnesses opposed to blood transfusions for their sick children. The Infant Doe case is thus something of an aberration.

But it does add to the concern of those like Connecticut Pediatrician and Pro-Life Activist Paul Bruch, who is afraid that "the right to die could become the obligation to die, that somewhere along the line someone will decide that retarded people in a certain condition should all die."

Critics fear that the new federal regulations go so far that they would require the maintenance of all handicapped newborns, no matter how monstrous or minimal their lives may be. "Withholding fluids or nourishment at any time is an immoral act," says U.S. Surgeon General C. Everett Koop flatly. The new rules may thus make doctors more hesitant to take what many had considered the more humane course.

Because of a recent case in California, doctors have yet another reason to fear the consequences of their actions. The case developed after Clarence Herbert, 55, a racetrack security guard, suddenly slipped into a coma following a seemingly successful 1981 operation at Kaiser Permanente Medical Center in Los Angeles. With the family's consent, his doctors removed his respirator. "They said he was clinically dead and would never return," insists his wife Patsy. When Herbert kept breathing, the doctors cut off intravenous food and water, again with the family's agreement. Finally, eleven days after the operation, Herbert succumbed. After hearing a nurse's report, Los Angeles authorities sought to prosecute the physicians for murder. Last month a judge dismissed the charges, but an appeal is pending. The family now claims to have been misled about Herbert's condition and is suing for malpractice.

There is a growing body of such criminal and malpractice actions, but few medical professionals or lawyers welcome the second guessing of the legal system. Says President's Commission Chairman Morris Abram, a New York attorney: "I cannot imagine anything worse than relying on a lawyer standing by the bedside leafing through papers to determine what treatment should be administered." He adds that legislation diminishing the privacy of the patient-physician relationship "would be mischievous and intrusive."

Some legislatures have sought to strengthen a patient's right to a say in the medical management of his death. Since 1976, 14 states and the District of Columbia have legalized the use of so-called living wills. Drawn up in case a person becomes incompetent, the document typically instructs doctors to stop "lifesustaining procedures" in the event of a "terminal condition." Some "right-to-die" laws attempt to make the directive binding on doctors, who may transfer medical responsibility for the patient if they disagree with his wishes.

The wills may also be of some legal help in states that have not authorized them, but their strength--the chance to speak explicitly about one's desires in the face of death--is also their weakness. For they may not cover the precise circumstances that occur. The President's Commission considers "durable powers of attorney" preferable. Forty-two states already have laws authorizing such documents. Both living wills and powers of attorney are easily revocable by a rational person, but the latter are more adaptable. They can empower anyone--relative, friend, adviser--to make any medical decision when the signee becomes incompetent.

Though little discussed because of its unseemliness, cost is also a factor in life-death decisions. The greedy relative who speeds a death to accelerate an inheritance is probably not a large problem outside of fiction, but the draining bills of prolonged hospitalization present real dilemmas. Should a daughter's carefully saved college-tuition money be spent to extend the life of a terminally ill parent? Even when the financial impact for an individual family is cushioned by Medicare or personal insurance, taxpayers and premium payers are affected.

There are times when the artificial prolongation of life is worthwhile, for example in the case of an accident victim whose organs may be used in a transplant. In addition, pioneering efforts such as those made for artificial-heart patient Barney Clark offer the promise of medical advances as well as the slim possibility of an improved life for the individual. The benefit to another's life was also paramount last week when a California woman who was declared legally dead nine weeks earlier after suffering massive brain damage gave birth to a child. Her vital functions had been maintained for a record period so that the fetus could achieve viability. Born after 31 weeks of pregnancy, her son is in good condition; the mother's life-support systems were removed following the birth.

Such unusual cases, and the many unique aspects of every case, are what makes an absolute rule so undesirable. Surgeon General Koop asserts that every physician knows the difference "between prolonging the act of dying and protecting the act of living." No doubt the dividing line between the two is a key determinant. And when in doubt, most authorities, including the President's Commission, would give the edge to sustaining life because of the high value society must and does place on it.

For Patrick McFadzen, 23, and his family, however, the presumption favoring life is exacting a terrible price. Nearly killed in a motorcycle accident three years ago, he has only a primitive brain function, but he feels pain and has suffered severe muscle spasms. "When his eyes were open," recalls his mother, "they were filled with terror." Last January he developed the ability to swallow and now can be fed orally. So no extraordinary efforts are being used to prolong his life at a nursing home in Two Rivers, Wis. He will survive indefinitely. "There are no clear answers," says his doctor, Steven Lawrence. "No judge in the land can adjudicate this type of human suffering.''

--By Susan Tifft. Reported by David S. Jackson/Washington and Jack E. White/New York, with other U.S. bureaus

With reporting by David S. Jackson/Washington, Jack E. White/New York This file is automatically generated by a robot program, so viewer discretion is required.