Deciding your own fate: living wills and power of attorney Individuals can decide their own fates, to an extent, by executing advance declarations that specify their wishes on the use of machines and feeding tubes if they become incapacitated. Although the authority of surrogates to make decisions on behalf of a patient is hindered when there is nothing proving a patient's desires, advance declarations carry substantial weight. The U.S. Supreme Court, in its June opinion in the case of a comatose Missouri woman, indicated support for the ability of an individual to make decisions while competent. Illinois has two methods, the living will and the durable power of attorney for health care. Neither requires a lawyer, and those who desire counsel can get it relatively inexpensively. Authorities on Illinois health law prefer the durable power of attorney for health because it covers a wider range of possibilities. The power of attorney allows people to designate surrogates to act on their behalf if they become incompetent. The form prescribed by state law allows various options, and provisions may be added by the person executing the document. The living will, by contrast, is more narrow. Theodore R. LeBlang, professor of medical jurisprudence and legal counsel to the Southern Illinois University School of Medicine, is chairman of the Illinois State Bar Association Health Care Section Council. He said living wills are restricted in their applicability to terminally ill patients and do not apply to artificial nutrition and hydration. If a person has both a living will and a durable power of attorney, LeBlang said the latter would be the controlling document. Mark Deaton, general counsel for the Illinois Hospital Association, said an advance declaration can alleviate family suffering. "The biggest problem at the end of life is ambiguity .... Even the relatives who maybe a year ago would have all agreed what to do, now that the moment has come and there is finality, it can all disintegrate," he said. Anthony Man

At its last meeting before the deadline for action on Senate bills this spring, the House Judiciary I Committee had an unusual visitor. The guest: Gary J. LaPaille, chief of staff to House Speaker Michael J. Madigan(D-30. Chicago). It was the only time LaPaille appeared at the committee all spring.

The panel was about to consider a bill that arguably would have had greater social consequences than anything else acted on in 1990. The subject was what has become known as the right to die. The right to die involves the withdrawal of life-support systems from patients who have no hope of recovery.

The chasm on the issue is so deep that the two sides even split on terminology. They disagree morally and ethically on the definition of life and on what constitutes life-sustaining treatment and equipment. Does the administration of water and artificial food constitute medical treatment postponing otherwise imminent death? Or is administration of nutrition and hydration simply the provision of normal life-sustaining materials? Under what circumstances may life-support be withdrawn? Who makes that decision?

LaPaille's interest was more narrow. The state's trial lawyers, who represent plaintiffs in lawsuits, had turned against the proposed law because of an amendment that immunized doctors from civil liability in right-to-die cases. With that opposition by trial lawyers, the amended bill was doomed in the House, where the speaker is known as a friend of the trial lawyers.

Until the trial lawyers turned thumbs down, it appeared as if the General Assembly might finally act after years of inconclusive debate on the circumstances and procedures when life-sustaining treatment could be withdrawn. The bill offered this year by Sen. John A. D'Arco Jr. (D-10, Chicago) considered artificial nutrition and hydration as treatment that could be withdrawn. Significant to this issue were several events that appeared to enhance the chances for passage of legislation.

The 1989 Rudy Linares case was the first event that worked toward passage of a state law. Linares was the father of a 15-month-old boy who had swallowed a balloon, choked and been left in a coma. Unable to convince Rush-Presbyterian-St. Luke's Medical Center to shut off the life-support systems maintaining the boy's bodily functions, Linares went to the Chicago hospital and disconnected his son, keeping the medical staff at bay with a gun until the boy died.

A grand jury declined to indict the father on a murder charge. Linares instead pleaded guilty to a misdemeanor weapons charge. Cook County State's Atty. Cecil A. Partee, stuck between the lawlessness of Linares' action and the public sympathy toward the father's plight, named a task force to examine the issues. Chicago lawyer Philip H. Corboy was the chairman. The committee's recommendations became the basis for D'Arco's legislation.

D'Arco's bill proposed The Life-Sustaining Decisions Act, which would have allowed a hierarchy of surrogates to make a life-support decision on behalf of a patient who lacked "decisional capacity." The hierarchy started with a guardian. included family members and ended with a close friend. Withdrawal would have been allowed if a patient had one of three "qualifying conditions": terminal condition, permanent unconsciousness, or incurable condition in which treatment would be unduly burdensome.

Other factors, less sensational than the Linares case, also dictated action. One was the Illinois Supreme Court. In the fall of 1989. the court issued the first of two opinions on the subject. In Re Longeway (133 Ill. 2d 33) set down guidelines that allowed

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Legislative Action Special Section

withdrawal of life-support with the approval of a lower court. The guidelines and court approval were reaffirmed in July by a second Illinois Supreme Court case, In Re Greenspan (Docket No. 67903). Many of the doctors and lawyers close to the issue argue that the need to seek court approval, with the attendant expense and trouble of finding a lawyer and publicly pursuing a case, places too heavy a burden on families at a time when people are already under great emotional stress because of the medical condition of a loved one.

In its Longeway opinion the Supreme Court invited the General Assembly to act, and in its 1990 annual report to the legislature the court said, ''The legislature is in a better position than are the courts to resolve the sensitive issues presented in cases of this kind." (For details on the Greenspan decision, see "Judicial Rulings," Illinois Issues January 1990, page 27; for Longeway, see "Judicial Rulings" in this issue, pages 60, 62.)

Finally, the D'Arco bill had the support of the Catholic Conference of Illinois, the public policy arm of the Roman Catholic Church. Jimmy M. Lago, executive director of the conference, said the centrist Catholic ethical perspective is against inordinate intervention that interferes with death. That would logically permit the withdrawal of artificial nutrition and hydration from some patients.

Nutrition and hydration as medical treatment is central to the debate over right-to-die. One group never uses the terms "nutrition and hydration"; instead it speaks only of "food and water." Yet many medical and legal authorities, including the American Medical Association, see no difference between machines that help people breathe and the apparatus that is used to provide liquids and artificial nutrition to a patient unable to swallow.

"Understand: This bill applies to artificial nutrition. This bill does not apply to anyone who can feed themselves or who can be fed by a hospital staff member. We are talking only about people who are fed through a tube." said Saul Morse, general counsel for the Illinois State Medical Society. "We're talking about a group of patients that are going to die, and the decision may alter the date of death but will not alter the fact that they are going to die."

Darrell Dunham, a professor at Southern Illinois University School of Law, said there is a fundamental difference between mechanical breathing devices and feeding tubes because withdrawal of nutrition and hydration guarantees death. "When you're talking about withdrawing food and water, you are withdrawing those kinds of activities that the body needs and the body can use to perpetuate itself naturally," Dunham said. "Ventilators and respirators and those kinds of things are designed to supplement and take over functions that the body is not able to take on itself. I think there is a distinction."

Support from the Catholic Conference . . . may have provided political cover for legislators hesitant to cross the anti-abortion movement. That was particularly important in 1990 . . .

Everyone involved in the issue agrees people can continue in coma-like conditions for decades, and Dunham points out that doctors are sometimes unable to be sure about a patient's status. "Miracles do occur," he said. "Unless the proponents of this type of legislation feel that they've got some kind of pipeline to God, ... I find these judgments to be disturbing."

Dunham, who is faculty adviser for the Christian Legal Society and is involved with the Rutherford Institute, an organization providing what it calls a Christian answer to the American Civil Liberties Union, also objected to the idea of allowing surrogates to decide on behalf of patients who do not have written, advance declarations. Society does not accept unwritten recollections about a person's wishes for disposing of his property after death, Dunham noted, so he argued there is no way such testimony should be allowed to suffice in life or death matters.

The strongest opposition to right-to-die legislation traditionally comes from individuals and organizations rooted in the anti-abortion movement. They regard any step toward encouraging or allowing life-support withdrawal as an immoral infringement on the sanctity of all life. Moreover, they argue that allowing the withdrawal of life-support systems would inevitably lead to doctors' actively assisting suicides under their theory that people will want to hasten death of a family member by the least painless way once the decision is made to withdraw life support.

The suggestion that euthanasia or suicide would be in any way promoted by such legislation is sharply rejected by Bill Broom, immediate past chairman of the Illinois State Bar Association's Health Care Section Council and a trustee of Southern Illinois Hospital Services, the parent company of Memorial Hospital of Carbondale and Herrin Hospital. "What has happened is medical science is able to hold off and slow down the process of dying in circumstances where death is an imminent result. That's what these bills are talking about — they're not talking about euthanasia."

Support from the Catholic Conference, which acts as the lobbying arm for the state's bishops and Cardinal Joseph Bernardin, may have provided political cover for legislators hesitant to cross the anti-abortion movement. That was particularly important in 1990, when the absence of abortion legislation allowed anti-abortion activists the time to devote to the right-to-die issue.

With relatively little fanfare for such a profound subject, the Life-Sustaining Decisions Act passed the Senate 33-19 and was poised for action in the House committee. But something happened in the Senate: An amendment was added to the legislation, which would immunize doctors' throughout the process from criminal prosecution or medical license discipline in connection with good-faith actions that complied with the law. The amendment added a third kind of immunity: protection from civil lawsuits.

Medical providers, including the immensely powerful Illinois State Medical Society and the Illinois Hospital Association, wanted immunity. The Catholic Conference and other backers signed on. But the Illinois Trial Lawyers Association, long the nemesis of the medical society, was adamantly opposed.

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The leading opponent, representing trial lawyers, was Corboy, who had chaired Partee's committee and had shortly before been named general counsel to the Illinois Democratic party by its new chairman, Gary LaPaille. Corboy said LaPaille would not do anything on a legislative matter without the blessing of the House speaker. LaPaille said he represented House leadership opposition because the civil immunity provision was bad public policy. He also said he did not act at Corboy's request.

During the committee meeting that featured LaPaille's unusual appearance, Partee's representative also announced he was against civil immunity, and several Democrats peppered sponsors of the legislation with questions about the provision. Most Democrats then voted "present," creating a de facto coalition between the trial lawyers and the anti-abortion groups, which had the support of many Republican committee members. The final vote was 3-6 with four voting "present."

D'Arco fingered the trial lawyers for killing his bill. The chief House sponsor, Rep. John F. Dunn (D-101, Decatur), said, 'The trial lawyers and Phil Corboy as their spokesman have missed the mark." Stronger in her analysis was Sen. Judy Baar Topinka (R-22, Riverside), who offered the civil immunity amendment in the Senate: "We're not talking about the right to live or the right to die; we're talking about the right to sue and the right to keep the meter running."

Corboy disputed the contention that he stopped the legislation. "For people to say that I just push a button is somewhat hyperbolic. When people are looking for reasons, they can always find someone to be the master stroker." He also dismissed the suggestion that the lawyers were trying to preserve potentially lucrative cases. He argues it was the opposite, that the doctors were tying to carve out an unneeded immunity from civil action. "A doctor can act in good faith, but he can be negligent. They want a special niche in the litigation system for themselves. If they don't get what they want, they pout, and then they throw up obstacles," Corboy said. "These fellas want protection. They've been brainwashed by their insurance companies. They get caught up in this need for psychological relief from lawsuits. They want special legislation for everything. They want immunity for all the vicissitudes of life."

Mark Deaton, general counsel for the Illinois Hospital Association, said Corboy's argument was "disingenuous because you can be right and still be sued, and it can cost you a lot in time, money and energy to prove you were right all along. It doesn't cost much to file a lawsuit."

After the committee vote, the two sides did most of their talking to the news media, not to each other. Neither side sounds too willing to compromise. Doctors say they need protection from frivolous lawsuits; lawyers say the doctors should have nothing to fear if they act properly.

Neither side sounds too willing to compromise. Doctors say they need protection from frivolous lawsuits; lawyers say the doctors should have nothing to fear if they act properly

Deaton said the intent was not to immunize from malpractice but to protect a medical provider from liability if that provider acted in good faith. He suggested a scenario in which most of the family is gathered around the bedside and a surrogate approves life-support withdrawal. "Next week, guess what? Someone else flies in from California, and lo and behold they rank higher on the list and they weren't consulted and they sue." He said he also wants to protect "against the third cousin twice removed coming into court suing everybody because he happens to disagree with the decision."

Deaton said he thinks there might be a way to draw the civil immunity provision more narrowly. LaPaille said, "Sometimes it takes two or three rounds 'round the track. Both sides will have to sit down and come to an agreement."

D'Arco, Topinka and another long-time proponent of action, Sen. David N. Barkhausen (R-30, Lake Bluff), both said they plan further attempts at passing legislation. "Maybe there'll be more awareness on the part of the legislature next year," D'Arco said, "it may take another tragedy like the Rudy Linares case before something's going to happen."

After the General Assembly adjourned, the Illinois Supreme Court said again that life-support could be withdrawn with an order from a lower court. In this 4-2 decision on Greenspan, the court ruled that if the feeding tube is withdrawn from a comatose patient, the cause of death would not be the halting of food and water but the condition that caused the coma. That finding broadens the categories of patients for whom life support may be withdrawn, subject to court approval.

The scope of that opinion, particularly its reasoning in broadening the categories of patients, could create an unusual twist. Deaton said he suspected the court's direction might prompt those who oppose liberalizing the rules on the right to die to change their tack. They may now push for enactment by the General Assembly of laws more restrictive than the court's decisions on withdrawal of nutrition and hydration.

Illinois has the authority to go either way, In June, the U.S. Supreme Court issued its own right-to-die opinion, rejecting a family request to withdraw the feeding tube from Nancy Cruzan, a Missouri woman comatose from a 1973 automobile accident. The court said that the wishes of a patient, stated clearly in advance, should govern life-support decisions. Absent such advance declarations, the court gave states much leeway to set their own standards.

Morse, the medical society lawyer, said it is most important to create a system that works. "We don't want something that's just going to be a press release and then if you look at the practicalities people say, "I don't want to touch it with a 10-foot pole.'"

The Catholic Conference's Lago said the U.S. Supreme Court action "underscores the importance of state legislatures," but he said translating that into action by the Illinois General Assembly would be difficult. "It's hard to do that with these bright lines. You can say and I can say with this particular patient in these circumstances it's okay. Then you say. "How do we generalize?'"

Anthony Man is the Statehouse bureau chief for the four Lee Enterprises newspapers in Illinois. His research on the right to die included interviews with legal and medical authorities of varying perspectives and with family members who have grappled with the issue in cases involving their own loved ones.

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