Controlling the End : Right-to-Die Laws Take on New Life

Making a house call in Chicago, Dr. George Thilo was attacked by four muggers and beaten severely. When gangrene developed because of his internal injuries, he knew that he would soon die.

“Don’t,” he adamantly instructed his lawyer and close friend, Luis Kutner, “let them take any heroic measures.” Kutner loyally carried out the request.

After that wrenching personal experience, Kutner became aware that most people share Thilo’s concern about controlling their own treatment and avoiding life as a vegetable maintained by machines.

So Kutner devised what he called a “living will,” an informal, written statement asking that no heroic measures be taken when death appears inevitable.

No Other Choices

That was 1930. For several decades, the living will was the only method available for attempting to control one’s final days.

Today, because of the pioneering efforts of Kutner, major litigation and legislation, adults in California and most other states can direct their own care when death approaches with far more legal force than Thilo.

In California, as specified in the Natural Death Act, a competent, terminally ill patient can sign a living will to withhold or withdraw life-sustaining treatment.

Under the newer Durable Power of Attorney for Health Care Act, an adult of any age or state of health can direct his future care and designate a surrogate for the day when he may be unable to make decisions.

And even those who merely muse aloud to relatives something like “don’t keep me alive on a machine” can have some assurance, under California court rulings, that doctors will adhere to the family’s instructions.

Vote May Be Called

Californians may also get the opportunity to vote next November on whether terminally ill patients can legally have help in dying, a concept already endorsed 282 to 239 by the California State Bar’s House of Delegates, made up of representatives from attorney groups around the state.

Hospitals and medical care providers say they strive to carry out patients’ wishes, as the law now requires.

“The existing laws in conjunction with the development of bioethics committees--and about 80% have them--have permitted hospitals to get a clearer understanding of what a patient’s and his family’s wishes are and to act accordingly,” said Dr. Daniel Lang, medical director for the 211-member Hospital Council of Southern California.

“I think our principal problems come from the fact there are still circumstances when you can’t get agreement among family members.”

Brenda Reed, general counsel for the 462-member California Assn. of Hospitals and Health Systems, described both the Natural Death Act and Durable Power of Attorney Act as “wonderful laws from the hospitals’ point of view.”

She said the main problem is educating the public about using the forms to make their wishes known.

The law has moved a long way since Kutner first began traveling the world espousing his “living will” concept. He touted his idea for nearly two decades before Bishop Fulton Sheen signed the first witnessed form in 1949. Actor Errol Flynn was second to sign in 1950, and Kutner himself was third.

“The march of an idea takes time,” the 80-year-old civil rights lawyer said recently in a telephone interview from Chicago. “I took a beating for 20 years as a ‘mercy-killer.’ The living will wasn’t that at all.

“When the quality of life is no longer there, it is against the 8th Amendment (prohibiting cruel and unusual punishment) to prolong the dying process.

“If I do nothing with my life but develop the living will, I have spawned a whole new concept of how to cope with the historical event of death.”

Most lawyers like the idea of the living will but have been far less convinced than Kutner of its efficacy. The document has always been considered evidence of a patient’s preferences, but until the mid-1970s it had no force of law in California or elsewhere.

‘A Piece of Paper’

“It’s just a piece of paper on which someone says to anyone else, ‘Hey, here is what I want if I can’t make my own decisions.’ You can write it in one sentence or nine pages, in Greek or Spanish or Sanskrit,” said attorney Jay N. Hartz, co-chairman of the Los Angeles County Bar and Medical associations’ Joint Committee on Biomedical Ethics. “It was the first way of addressing how to control what happens in the future.”

The highly publicized 1975 case of a comatose young woman named Karen Ann Quinlan finally jolted state legislatures to turn the living will into statutory law.

In a landmark ruling, the New Jersey Supreme Court granted the request by Quinlan’s parents to shut off the respirator that appeared to sustain her in a drug-related coma. She survived another 10 years.

The next year, the California Legislature became the first to pass a living will law. It was called the Natural Death Act. Now 37 states and the District of Columbia have similar statutes.

California’s law, while applauded in concept, has proved all but unusable in practice.

‘Savaged by Opponents’

“It was the first in the world but it was a mess. It was savaged by opponents and it came out a dog’s breakfast,” said Derek Humphry, founder and executive director of the Santa Monica-based Hemlock Society, which has championed the living will as well as euthanasia.

The Natural Death Act permits a competent, terminally ill patient to instruct doctors to “pull the plug,” or cut off life-sustaining treatment.

However, the law requires two physicians to certify the patient as terminal, requires a 14-day cooling-off period before it can be signed and requires two witnesses who have virtually no connection to the patient. It must be renewed every five years.

“The law has just not been very workable,” said Richard S. Scott, the physician-attorney who has won key cases allowing patients to direct their own treatment. “Probably the only people who could qualify as witnesses, for example, are other terminal patients.”

Prof. Alexander Capron of USC Law School, who is also active on the Biomedical Ethics Committee, said the definition of “terminal” is so restrictive that anyone qualified would not be alive two weeks later to sign the directive.

“It either requires a colossal misprognosis that you are about to die, or a medical miracle,” Capron said. “And if that happened, you wouldn’t want this. You would say, ‘Oh, I am going to live after all. The angels came down and saved my life.’ ”

Different Approaches

Two bills are now pending in Sacramento to make the statute easier to use.

Sen. Barry Keene (D-Vallejo), who authored the Natural Death Act, has proposed amendments that would eliminate the 14-day waiting period and would include patients in comas or in a “permanent unconscious condition” as well as those who are terminally ill.

His bill also would extend the five-year life of the directive to seven years, and would require a determination of the patient’s condition only by the attending physician.

Keene’s bill has been approved by the Senate Judiciary Committee and is now in the Senate Appropriations Committee.

Assemblyman Elihu Harris (D-Oakland) also has introduced a bill, which has passed the Assembly and is now awaiting Senate committee hearings. His bill would scrap the Natural Death Act and substitute a similar law advocated for all states and titled the Uniform Rights of the Terminally Ill Act.

Harris’ proposal differs from Keene’s amendments primarily in eliminating the five- or seven-year limit on the document and providing only for terminal patients and not for those in comas.

Adopted by Some States

Harris aide Valerie Lewis said the assemblyman is carrying the bill at the request of the National Conference of Commissioners on Uniform State Laws. Already adopted by six states, the uniform law would make a living will written in one state valid in other states.

Legal scholars who deal with biomedical ethics, however, believe that the Natural Death Act has already been supplanted by more workable legislation and should be allowed to remain moribund.

They believe the 1976 law is too restrictive because it provides only for refusing heroic treatment and can be used only by terminal patients.

“The problem with the Natural Death Act is that it only offers one choice--thanks but no thanks,” said Leslie S. Rothenberg, UCLA ethicist and professor of law. “But there are other people who would like to draw the line at someplace quite different.”

“It is absolutely correct that the Natural Death Act is not effective the way it is, and (the proposed legislation) would make it more effective,” said Loyola law professor Vicki Michel. But “tinkering with the statute that just deals with terminal illness and irreversible coma may imply to people that the ability to control treatment is more limited than it is.”

Health Care Act Preferred

Most legal experts prefer the Durable Power of Attorney for Health Care Act, passed in 1983.

That law permits any adult to sign a witnessed or notarized form explaining his preferences for treatment, and designating a surrogate to instruct medical personnel if he is unable to do so. It must be renewed every seven years.

“You can say whatever you want--never unplug me or unplug me if it is 100 degrees outside,” Hartz said. “And you can say who you want to make medical decisions for you. . . . You can give them specific written directions or you can just give the person broad discretion.”

A key benefit, Hartz said, is that a proxy need not waste time going to court to be appointed as the patient’s guardian. The document provides authority for him to act.

Capron is studying the usage of the power of attorney form. But its advocates, who say the form is needlessly complex and available only in English, say few people even know the device is available. They estimate that even fewer people than those who have made wills (about 30% of the population) have signed durable power of attorney forms.

Form Largely Ignored

Dr. Richard J. Lewis, an internist on the Bioethics Committee at St. John’s Hospital in Santa Monica, offered the form to about 200 patients, half of whom are over 60, but said only 10% filled them out.

Law professor Michel, 47, and Barry Shanley, 37, a Beverly Hills attorney active in right-to-die issues, conceded that even they have not taken time to fill out the form.

“I would advise anyone of any age or any kind of health who has any preference regarding his medical treatment to fill out one of these,” Rothenberg said.

“It is a hospital’s natural ritual to call family members. . . . There are many people who may be living with people they are not married to, and would rather have those people involved than take potluck on the first available relative.”

Hartz said he first advises people to think carefully about what treatment they want--everything known to medical science, nothing, or something in between--and whom they want to designate as a proxy.

Once the form is completed and witnessed or notarized, he said, copies should be given to the surrogate, to close relatives, to doctors and to any health care facility one enters. Relatives also should be informed about the location of the original form.

Less Guilt for Family

A side benefit of the power-of-attorney approach, said attorney Suzanne West, who represents several hospitals, is the guilt-free effect of the forms on a patient’s family.

When a formerly active woman lapsed into a vegetative state at one of her client hospitals, she said, the emotionally torn family approved withdrawal of life-support equipment only after finding the woman’s power of attorney form when they went through her desk to pay bills.

“I remember the son clutching this document,” West said, “and the relief that played across his face as he said, ‘This is what Mom wanted.’ ”

Low utilization is not the only problem with the power of attorney forms, medical care givers report, adding that they emphatically wish every patient had one.

Lewis recalls a St. John’s case in which a patient’s designated substitute refused to carry out the patient’s “pull-the-plug” directions.

“In theory, (surrogates) don’t have that option,” he said, “but if they do backtrack, they can create serious difficulty.”

The patient died, despite life-support equipment, before the proxy could be persuaded to carry out his instructions.

Other Problems Possible

Dr. Mark McGowan, medical director of the intensive care unit of the Hospital of the Good Samaritan in Los Angeles, said an elderly patient with Alzheimer’s disease who suffered a stroke had a properly completed power of attorney form, and the designated proxy, an attorney, duly asked for life-support systems to be withdrawn. But the patient’s physician refused.

Despite court opinions to the contrary, McGowan said, some doctors still feel that disconnecting life-support systems, especially food and water, will result in civil malpractice suits or even murder charges against them.

In such cases, he said, he asks the objecting doctor to withdraw, assumes charge of the patient and carries out the patient’s wishes.

The power of attorney form is not for everybody, attorneys agree. Many believe that a streamlined Natural Death Act is needed by elderly people who have nobody they want to designate as a surrogate.

“My father is a good example,” said Paul Donahue, Keene’s legislative consultant. “He wouldn’t want anybody in the family making the decision, just because there is a potential for guilt. He would want to make it. So he would use the Natural Death Act.”

Line Drawn at Euthanasia

Most proponents of self-directed treatment draw the line at euthanasia. But many legal experts now advocate introducing the Netherlands-style assisted suicides to California, as indicated by the resolution passed last September by the State Bar’s House of Delegates.

The resolution, written by Beverly Hills attorney Shanley, stated that a competent, terminal patient could request a doctor’s help in dying, after consulting a psychiatrist and waiting 10 days to rule out any change of mind. Because of the existing political climate in Sacramento, the lawyers have not attempted to have their advisory resolution made into law.

But attorneys Robert Risley, whose wife died a painful death from cancer, and Michael White are now circulating an initiative petition that would allow either a patient or his proxy to request a doctor’s help in dying.

Humphry of the Hemlock Society, which is backing the proposed initiative, said advocates have collected two-thirds of the necessary signatures to qualify the measure for the November ballot.

“We have broken the taboo. We have enabled people to talk about it (mercy killing),” Humphry said. “There is a revolt by Americans about dying badly.”

Although current laws help people control their health care, the courts as well as legislatures have created major law governing patients’ rights.

Three recent cases, all decided by the 2nd District California Court of Appeal in Los Angeles, have guided medical personnel, strengthened patients’ control over their own bodies and prodded legislators to act:

- Barber vs. Superior Court, 1983. Kaiser physicians Neil Barber and Robert Nejdl were charged with murder after removing a respirator and intravenous fluids for Clarence Herbert, 54, who had lapsed into a coma and suffered brain damage after abdominal surgery.

Dismissing charges against the doctors, the court established that doctors can withdraw life-support systems, including food and water, in some terminal cases without fearing criminal penalty, and that a patient’s family can decide his treatment.

- Bartling vs. Superior Court, 1984. William F. Bartling, 70, suffered from five potentially fatal illnesses but remained alert and asked that a painful respirator be turned off. The Court of Appeal granted his request--shortly after Bartling died. The case established that a patient who is not comatose or even designated terminally ill can refuse treatment.

- Bouvia vs. Superior Court, 1986. Elizabeth Bouvia, now 30, sought to halt force-feeding at Los Angeles County’s High Desert Hospital. Her victory firmly established that patients have the right to direct their own treatment regardless of age, terminal status or motivation. When High Desert later cut off her morphine, she won another ruling in Superior Court to continue it and was transferred to County-USC Medical Center, where she remains. (Two years earlier Bouvia had lost a court bid in Riverside County to force a hospital to make her comfortable while she starved herself to death.)

Bolstering the court rulings, guidelines were issued late last year by the state Department of Health Services to help nursing homes comply more easily with patients’ and family’s wishes. The guidelines say nursing homes should honor proper, durable power of attorney forms without fear of penalty. The department also encourages long-term facilities to make the forms available.

The guidelines were issued, said Paul Keller, the department’s chief of field operations for licensing and certification, because many nursing homes feared that honoring a patient’s desire to withdraw intravenous food and water, for example, could prompt a $25,000 citation for violating a state regulation requiring adequate nutrition and hydration for all patients.

“I don’t think the law can ever resolve this issue completely because it is an issue that sticks in the heart of every human being concerned over life and death,” said David Langness, executive director of the Hospital Council’s National Health Foundation, who forbade use of heroic methods for his own octogenarian aunt.

“It continues to plague hospitals when health care people who see themselves as healers are confronted by people who don’t want to be healed,” he said.

“However, we have come a long way in dealing with these issues in a rational, humane way. Hospitals usually have no problem honoring a patient’s wishes.”