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Dealing with death, by law, for terminally ill:
Ruthless or compassionate?

Almost lost amid the preoccupation with the budget and taxes was a controversial and emotional issue that came to a head just a few hours before midnight June 30, the theoretical deadline for General Assembly adjournment and the actual deadline for getting bills passed by a simple majority vote.

A group of legislators warned colleagues that they were on the verge of authorizing the ruthless killing of helpless people. To Rep. Penny Pullen (R-55, Park Ridge) passage of the measure in question would create "a license to kill. This is the most important vote of this session for the people of Illinois. For it is the way for you to declare on which way you really stand, for life or for a terrible, painful, intentional death."

The majority saw the issue differently, as an attempt to provide a compassionate way for families to cope with the crisis of a terminally ill relative kept alive only by the advances of high-tech modem medicine. They said family anguish would be eased if life-and-death decisions regarding loved ones could be made without having to seek permission from a judge.

In the end, the House sent the proposed Health Care Surrogate Act to Gov. Jim Edgar on a 69-42 vote. The Senate had earlier passed it 33-23. Edgar's signature would put Illinois at the forefront of states with comprehensive policies a little more than a year after the U.S. Supreme Court said the issue was one for states to resolve. Proponents believe the legislation may become a model for other states.

To the sponsors, Rep. John F. Dunn (D-101, Decatur) and Sen. John A. D'Arco Jr. (D-10, Chicago), the need was clear. In Illinois, the state Supreme Court has created a body of law that requires family members to go before a judge for permission to discontinue life-support for a terminally ill relative. (For details on In Re Longeway and In Re Greenspan, see "Judicial Rulings," Illinois Issues, January 1990 and August & September 1990.)

The question does not arise if a patient has spelled out in writing what he or she would want done. But legal and medical authorities report that few people have executed the necessary documents: a living will to refuse certain treatment and/or a durable power of attorney for health care to appoint a substitute decisionmaker. That leaves families with the choice of keeping the patient indefinitely hooked up to medical equipment or going to court.

Dunn, chairman of the House judiciary committee on civil law, said it is wrong to force people to go through the trauma and expense of a court battle when they are already coping with the trauma and expense of a dying loved one. "The public doesn't want that. They want decisions made privately, outside the limelight of a courtroom." In addition, Dunn said, judges sometimes make a choice contrary to what the patient would have wanted. He said family members are in the best position to act as the patient would have. Neither were the courts happy to be charged with making such decisions. In one of its opinions on life-sustaining treatment, In Re Longeway, and in its 1990 report to the General Assembly, the Illinois Supreme Court asked legislators to set policy.

Surrogate decisionmakers could act on behalf of patients unable to act for themselves, who have one of three qualifying conditions

The Dunn-D'Arco legislation would place responsibilitiy for treatment decisions on family and friends. Surrogate decisionmakers could act on behalf of patients unable to act for themselves, who have one of three qualifying conditions: 1) terminal condition with no prospect for recovery, 2) permanent unconsciousness for which treatment would provide only minimal medical benefit, or 3) incurable or irreversible condition for which treatment does nothing positive. A second medical opinion is required. "Any medical treatment, procedure, or intervention" could be withdrawn if it "would serve only to prolong the dying process." This includes artificial nutrition and hydration, called food and water by some. If a patient has a qualifying condition, a hierarchy of surrogates would kick in, with legal guardian at the top of the list. Then comes spouse, adult child, parent, adult brother or sister, adult grandchild and close friend. If there is no relative or close friend, a judge would decide. Surrogates would be charged with acting as the patient would have wanted, even if that conflicts with a surrogate's personal view. A decision would not be binding if the patient, even if otherwise legally incompetent, objects.

Legislative discussion rarely dealt with the legal fine points. It

42/August & September 1991/Illinois Issues

was raw and emotionally charged. Pullen, for example, called the proposal a "euthanasia bill" that would "give doctors a license to kill, as long as they've been directed by a family member." She and other opponents raised the specter of out-of-control, inhumane killing.

Proponents said the other side was taking an inhumane position. "In 1991, scientific technology has arrived at a point far beyond the imagination of man 10 years ago, 20 years ago, 30 years ago. We can keep people alive, though not conscious, though not thinking, though not reacting. We can keep them alive for weeks, months and years," said Rep. Grace Mary Stern (D-58, Highland Park). "We all see ourselves as perhaps that poor curled crippled patient in the dark room with only the sound of the ventilators going day and night,... forgotten except by our family [which] is slowly being destroyed and impoverished, coming daily to look at what is left of us. Slowly we become a husk of what we once were."

It took more than gripping images during legislative debate to win passage. Proponents faced significant hurdles as they attempted to get the issue to the governor's desk.

The proposal did have a blue-ribbon list of establishment supporters, including interests often at odds. Backers included the Illinois State Medical Society, Illinois Hospital Association, Illinois State Bar Association, Chicago Bar Association and Catholic Conference of Illinois. The list meant little to opponents, however. One, Rep. Thomas J. McCracken Jr. (R-81, Downers Grove), argued it was wrong to let so-called experts determine public policy on a fundamental, life-and-death issue.

Last year, the players were the same, but an attempt to pass similar legislation failed because they were split. Some trial lawyers, who file personal injury lawsuits, were unhappy about a provision granting limited immunity to doctors who preside over withdrawal of life support. This year's legislation would immunize doctors for good faith decisions relating to termination, but it would still subject them to malpractice suits for the overall treatment of a patient.

That left one huge hurdle, a formidable opposition whose leaders were as strongly committed to their beliefs as Dunn and D'Arco were to theirs. It was not partisan; Democrats and Republicans voted both ways. Rather, the resistance was rooted in the so-called right-to-life movement, whose foundation is opposition to abortion. Its objections to anything that might encourage or allow withdrawal of life support stem naturally from a belief in the sanctity of life. Pragmatically, the absence of legislative action on abortion gave activists time to devote to the treatment issue.

To counter the anti-abortion forces, proponents emphasized that the anti-abortion Catholic Conference was in their corner. The Catholic Conference is the public policy arm of the Roman Catholic church and lobbies for Cardinal Joseph Bemardin and the state's bishops; its support helped provide political cover for legislators hesitant to cross the anti-abortion movement, though some, such as Rep. Larry Wennlund (R-84, New Lenox), said they needed no cover. "This is not a pro-life issue. It is a right to die with dignity in peace," Wennlund said, adding that until he broke with the movement on this issue he had always scored 100 percent from "pro-life" groups. Wennlund is the top Republican on the House judiciary committee on civil law.

The opposition also argued that relatives would end life-sustaining treatment for the wrong reasons. Darrell Dunham, a law professor at Southern Illinois University at Carbondale who has described himself as a conservative Christian activist, predicted family members would start thinking about money. "What about the case of the brother who comes in and has no idea about what his brother's thinking is? The brother happens to be the one that's the sole beneficiary under the will," Dunham said. "So here we are: We have the chance of discontinuing life-sustaining treatment and inherit $150,000 or continue treatment and the estate is eaten up."

Mark D. Deaton, general counsel for the Illinois Hospital Association, downplayed Dunham's concern. "Most family members are motivated by their concern and feeling for their loved ones," he said. "My sense is that the family is not thinking about their checkbook." Dunn said there are safeguards to ensure life-support is not terminated casually by some distant relative. "You have to jump through a lot of hoops before the surrogate comes into play," the sponsor said.

By far the greatest controversy, and most emotional rhetoric, concerned nutrition and hydration (the proponents' terminology) or food and water (the opponents' words). Opponents of ending treatment regard food and water as fundamentally different from machines. "Food and water are not medicines, food and water are basic necessities of life, they are not a mechanical machine," said Rep. John J. McNamara (D-27, Oak Lawn). Pullen said withdrawal of food and water "is equivalent to saying it's okay for a doctor to take a pillow and put it over someone's face except that might be more humane than this. This is not to prevent pain. Starvation is a very slow and painful death."

Proponents countered, however, that the terms food and water are misleading, since the process involves artificial nutritional products typically administered through a tube surgically implanted in a patient's abdomen. Much of the medical establishment, including the American Medical Association, sees artificial nutrition and hydration as just another kind of procedure that can ethically be stopped if a patient has no hope of recovery. Many legislators agreed. "I do not believe that the feeding with tubes is a natural process," said Rep. Gordon Ropp (R-88, Bloomington). He said the legislation would "allow this death to come about with some degree of dignity."

Death with dignity was ultimately the symbol seized successfully by proponents. The sponsor said it was up to the legislature, acting for society, to respond to the changes created by the miracle of modern medicine. "We have made an interface between life and death where there are ethical and moral decisions people have to make," Dunn said. "There is a lot of sentiment among the general public for action."

So important is the legislation that Saul Morse, general counsel for the Medical Society, predicts it will be remembered as one of the session's most significant achievements long after the legislative headlines of 1991 are forgotten.

Anthony Man is Statehouse bureau chief for the four Lee Enterprises Inc. newspapers in Illinois. He writes frequently about health care issues.

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