PERSONAL HEALTH : Last Wishes : Dying: Fear of being suspended in a vegetative state has triggered an unprecedented demand for living wills since high court ruling.

Dori Crews, a healthy, 31-year-old nurse from Orange, recently signed a simple document requesting that she not be kept on life-support systems if she becomes terminally ill and is unable to make decisions for herself.

Crews was motivated by a recent U.S. Supreme Court decision denying the termination of life support for a Missouri woman who has been in an irreversible coma for seven years.

“I don’t want to be like that,” Crews says.

In a June 25 ruling, the U.S. Supreme Court denied the family of Nancy Cruzan the right to remove the life-support equipment because of a lack of evidence defining Cruzan’s wishes.

That decision, health and legal experts say, has renewed Americans’ interest in living wills, documents that clarify the wishes of people before they become terminally ill and cannot speak for themselves. Across the country, people are echoing Crews’ sentiments.

Officials of two New York-based groups that promote living wills say they have been overrun by concerned individuals since the high court ruling. And the response has highlighted the problems and complexities surrounding living wills.

“I’d call it living will fever. Everyone is saying, ‘I don’t want to be like that woman. What can I do? I’ll get a living will,’ ” says Doron Weber, spokesman for the National Council on Death and Dying and the Society for the Right to Die. “It’s unbelievable. We’ve been inundated with calls. We’ve had to hire extra staff. Our board members have come in to help. The phone has not stopped ringing. Our volume of mail is running at an all-time high. I don’t think anyone expected we would have this kind of reaction.”

The high court made clear that it supports the right to terminate life-sustaining care. But it denied the Cruzan request because the family could not provide “clear and convincing evidence” that Nancy Cruzan would wish to die. Cruzan, 32, who has been in a vegetative state since an automobile accident seven years ago, had not stated her wishes in writing.

Thus, Weber and others say, the decision has served to strongly promote living wills, also called advanced directives.

“The Supreme Court, essentially, gave Constitutional stature to living wills,” he says. “They said, as long as you have clear and convincing evidence of your wishes, you would have a constitutional right to have them honored. It gave a new kind of support.”

But the ruling also makes clear that the termination of life-sustaining equipment has become more of a social problem rather than a legal issue, says Alexander Capron, a USC ethicist.

Experts agree that Americans have not made living wills a tradition and are uncomfortable discussing death and dying.

“The main thing people should know is this is not primarily a legal issue and in some ways it’s not even primarily a medical issue,” Capron says. “It’s a matter of communication: thinking through and talking through with your loved one, with the advice of your doctor, what you want to have happen.”

Public opinion polls have long showed overwhelming support of living wills, but only about 15% of Americans have them, Weber says.

A California study also showed that more than one-third of physicians treating the terminally ill were unaware of a single patient in their care with a living will, says Linda Emanuel, a Harvard Medical School ethicist.

Many living wills are ineffective, in part because of the lack of well-established procedures to obtain and complete the documents and the failure of a patient or family to make the document known to a doctor, Emanuel said in the June 9, 1989, Journal of the American Medical Assn.

But federal legislation was recently proposed to popularize living wills. Hearings will begin this month on a bill introduced by Sens. John Danforth (R-Mo.) and Daniel Moynihan (D-N.Y.) that would require states to have living will legislation--10 states have no such laws--as a condition of participating in Medicaid and Medicare.

The bill, the Patient Self-Determination Act, would also require hospitals to inform patients using Medicaid and Medicare of their right to prepare living wills and would outline safeguards to honor the patient’s wishes and ensure no abuses occur.

The bill “has a good chance of passing, helped to some extent by the Cruzan decision,” Weber says.

Such legislation would have widespread effects, Weber says, because 70% of hospital deaths result from a decision to cease treatment.

The Danforth-Moynihan bill would also be a step toward a uniform national policy on living wills, he says.

Because states are free to enact their own living will laws, various laws and documents have been drawn. The forms sometimes confuse individuals who move from one state to another, or whose family members live in different states.

California has two living will laws. The California Natural Death Act, passed in 1976, was the first such state legislation in the country. It is limited and badly outdated, says Roger Purdy, manager of physician practice programs for the California Medical Assn.

A 1984 law, the Durable Power of Attorney for Health Care, expanded on the 1976 law and is now recommended as the most effective document for Californians.

There are two basic types of living wills: one specifically states an individual’s wishes about life-sustaining care; the other assigns the power to make such decisions to a health care agent, such as a relative or close friend.

The state’s Durable Power of Attorney for Health Care combines the two, Purdy says, adding, “You can express your wishes about the kind of medical care you do or don’t want, if you become incapacitated and can’t speak for yourself. And it allows you to appoint another person to withhold or consent to medical care, if you become incompetent.”

Californians have the best chance of having their wishes followed if they use a state document, Purdy says. While other living wills probably would be honored, they would “not provide the same kind of assurance and protection that the other documents will,” he says.

But some experts advocate the more wills that are more specific than the Durable Power of Attorney for Health Care. Harvard ethicist Emanuel, for example, has published a detailed document called a Medical Directive. It requires individuals to check 48 boxes specifying exactly what kinds of treatments they would want under what circumstances.

She says the language in many living wills is too vague and that such terms as “heroic measures” and “no hope of recovery” are relative and confusing.

Emanuel’s will also provides for a health care agent. But, she says, assigning an agent to make life-or-death decisions without providing specific instructions places too great a burden on that person. It might also encourage the agent to take the most conservative action.

But, Purdy says, a general statement of one’s wishes and values, along with the appointment of an agent, is sufficient, especially if people discuss their wishes with the agent when the will is signed.

“It’s impossible to predict in advance all of the medical situations that might arise,” he says. “If people make up a detailed laundry list, they might tie up the hands of the health provider and agent to make the best decision.”

Users should discuss their wishes with their health care agent before signing the Durable Power of Attorney for Health Care, says Treacy Colbert of California Health Decisions, one of 22 groups in a statewide coalition that promotes the document.

“We think it’s important that the person discuss this with the agent beforehand so that the agent is very clear about your wishes and so that the agent feels comfortable in carrying out your wishes,” Colbert says.

“Some family members may disagree” about life-sustaining treatment,” Colbert says. “But if you made your wishes clear and your agent feels comfortable about carrying them out, it can eliminate a lot of the dissent that can arise in the family.”

At California Health Decisions, an Orange-based group that conducts frequent workshops for the public and health-care professionals on the law, officials see much confusion. “We still find that people don’t understand what it is,” Colbert says.

For example, completing the document does not require a lawyer’s assistance. It only needs to be signed by a witness and given to the doctor, health care agent and other friends or relatives, Colbert says. In contrast, an estate will is usually filed with a lawyer and kept private during one’s lifetime.

The living will allows individuals to state their wishes about medical care, “but it doesn’t give people any power over your finances and your property,” she says.

The ease of filling out the document, which can be obtained free or for a nominal fee, persuaded Crews to complete it. She says: “I thought it was a great thing that you could have some control over how you would like your life to be handled if you couldn’t speak; and without having to pay a lawyer. It wasn’t hard at all to do. It only took me a half-hour. I had two of my co-workers witness if for me.”

Crews says she used the document to indicate that she would want to die at home or in a hospice, instead of a hospital, if possible. Individuals can also state their desire to donate organs for transplant or medical research.

The final step in making a living will effective is informing physicians that the document exists and asking them to honor it, experts say.

Don’t wait for your doctor to ask you if you’ve thought about a living will, Weber says, adding: “Patients are bringing it up more and forcing physicians to confront it. As patients become more aware, any decent physician is going to realize it’s part of his job to deal with these questions.”

WHERE TO WRITE

To obtain California’s Durable Power of Attorney for Health Care form, send a check or money order for $1.59 payable to Sutter Publications, P.O. Box 7690, San Francisco, Calif. 94120. You will receive a form, a pamphlet describing the document and an identification card. To obtain a living will from another state or to receive news about living wills, specify the state and send a self-addressed, stamped envelope to Society for the Right to Die, 250 W. 57th St., New York, N.Y. 10107.

Making a Living Will Effective

* Use a form that will be upheld by state law. (In California, the Durable Power of Attorney for Health Care.)

* Use a form that allows you to state personal wishes, as well as to assign another person to act as durable power of attorney.

* Do not assign your physician as your health-care agent to avoid a conflict of commitment.

* Complete the form properly and obtain signatures of the required number of witnesses, preferably non-relatives.

* Ask your personal physician whether he or she will honor your wishes. If so, give your physician a copy of your living will.

* Distribute copies of your living will to several close friends and relatives.

* Keep abreast of changes in state or federal law that might cause your living will to become outdated or provide you with a better alternative.

* Your living will should be periodically reviewed and revised.