The Last Word? : A New Law Requires Hospitals to Bring Up Subject of ‘Living Wills,’ but Few Patients Prepare for Worst

Every day we are changing, every day we are dying, and yet we fancy ourselves eternal.

--St. Jerome

Hospital admissions officer : “Do you have a living will?”

Incoming patient: “Why? Am I going to die! “

--Overheard at a Los Angeles hospital

When the Patient Self-Determination Act took effect Dec. 1, the hope, if not the mandate, was that it would help people prepare for the worst.

If that tonsillectomy turned into heart failure, if a stroke spelled irreversible coma, if a car crash caused permanent brain damage, would your doctors, your family, your closest friends know what medical treatment you’d want?

Offered as a prescription for patients who want the final say--even when they are in no condition to say it--the act is the latest response to growing concerns about artificial extension of life.

While it may be too early for official assessments, an informal survey of more than a dozen Los Angeles area health facilities suggests that the law has “pricked” patients’ attention, but has not prompted many to sign up on the spot.

The reasons may include the absence of federal regulations enforcing the statute and widespread ignorance about patient rights.

“There’s a lot of healthy confusion around here,” reports one busy hospital admissions director. “We’re doing what we believe the law requires us to do, but there are a lot of questions from all sides. . . .”

The law requires only that the question be asked and answered: Do you have an advance directive for medical care? It does not require patients to have directives, and hospitals cannot deny care to the many who do not.

But by requiring hospitals, nursing homes, health maintenance organizations and others to do the asking, the law at the very least requires patients to think about a subject few want to talk about: their own deaths.

In the United States, there are more than 10,000 people being maintained in “persistent vegetative” conditions. Two of the most highly publicized cases were those of Karen Ann Quinlan and Nancy Cruzan, whose families went to court to let them “die with dignity.” In the wake of such cases, Sen. John Danforth (R-Mo.) drafted the legislation in 1989.

Polls have shown that up to 90% of American adults do not want to be kept on life-support systems if there is no hope for recovery. Yet fewer than 10% have advance directives to dictate what treatments they would or would not want if they were permanently unconscious or terminally ill and unable to speak for themselves, according to various studies.

Since Dec. 1, hospitals say more patients are coming through their doors with living wills and other documents in hand. But not many more.

That comes as no surprise to Dr. Arthur Rivin, chief of medical education at Santa Monica Hospital, which took the initiative two years ago to implement many of the provisions now in the law.

“Our experience has not been very fruitful,” says Rivin. “A hospital is not the ideal place to do this. . . . About 25% of our people come in acutely ill, too sick or too out of it to discuss advance directives. And most elective surgeries come in the same day as the surgery. They’re admitted at 5 o’clock in the morning, and surgery could be two hours later. This is the wrong time to talk to people about that.”

But Rivin and others have found that patients are eager to talk outside the hospital. “In my own office, I’ve had more people ask about and sign advance directives in the last six months than the entire hospital had in two years,” he says.

Dr. Jeffry Huffman, USC associate professor of urology, says it can be “tough” to broach the subject, but “I feel it’s important to be very honest, to tell them things do happen, and I need to know what they want me to do. . . . In the past, when things took a turn for the worse, that’s when you would talk to the family members.”

Shortly after the law took effect, an orthopedic surgeon in a local hospital complained to a colleague: “What am I supposed to do? Do I have to go ask (the patient) if he has one of these documents? I don’t want to ask him. I just can’t do it.”

The law, in fact, requires little of physicians. But Dr. Thomas Wallace, an internist and attorney who has worked with the national Society for Critical Care Medicine to draft amendments to the law, says he believes the law could ultimately force long-overdue communication between doctors and their patients.

“There is no question that physicians are trained to save lives, and they can be very uncomfortable dealing with death. The government has no good way of telling doctors to talk to their patients about this, but one can force the hospitals where they practice to do something when the patients come in,” says Wallace.

But the law does not require physicians to follow the patient’s directive. A recent study of nursing home patients showed that 25% of their doctors did not follow their written directives regarding withholding or extending care.

And in a university hospital, just days after the law took effect, an intensive-care nurse phoned the house bioethicist at home to tell him that there was a plan to erase a Do Not Resuscitate order from the chart of a patient who had asked, in writing, for no heroic measures. The reason: his daughter was a lawyer and the ICU team was worried about a suit. At the bioethicist’s request, the daughter was contacted; she assured the staff that she agreed with the order.

Some patients trust their doctors to make the right decisions on their behalf, but for retired Long Beach oil worker Donald McLaughlin, trust had little to do with his decision to sign a durable power of attorney. “I’d rather know that my niece here is my legal agent to make sure the doctors do what I’ve told them I want,” he says.

Because the law is tied to the Medicare and Medicaid programs, its enforcement rests with the federal Health Care Financing Administration. But more than a year after the law was passed, the financing administration has yet to issue regulations on how to implement it.

“This is the sort of law that really is self-implementing,” says one highly placed federal health official. But when the administration does issue regulations, don’t expect details. Says the official, “It won’t be a cookbook.”

In the absence of specific directions, hospitals are doing what they believe the law wants them to do. Sometimes the differences are subtle; sometimes blatant:

* The law requires that health-care providers convey their policies for honoring a patient’s final treatment wishes. In California, there can be a conscience disclaimer, which permits a hospital to ignore an advance directive if it is in conflict with the hospital’s mission. For example, Catholic philosophy has been integrated into patient materials at Saint John’s Hospital in Santa Monica, which include this phrase: “Saint John’s Hospital reserves the right to raise an objection to the withholding or withdrawing of life support in certain situations on the basis of conscience.” But that caveat may be shared only with patients who say “yes” when asked if they want to see information on hospital policy.

* Most hospitals provide free advance directive forms to patients and their families. At Arcadia’s Methodist Hospital, forms are provided free to anyone in the community as well. But at Huntington Memorial Hospital in Pasadena, the documents are for sale in the gift shop for $1.08, tax included. (When the gift shop is closed, the forms can be had without charge from hospital staff.)

* If a patient was already hospitalized when the law took effect, does he or she still have a right to its benefits? Technically, the law affects only admissions starting Dec. 1. But most ethicists, and some nursing homes, agree that all patients should be advised of their rights to refuse treatment.

* Some states say they will honor directives from out of state, but nothing in the law guarantees portability. Some experts suggest that people who spend large amounts of time in more than one state have duplicate documents.

* California paramedics are not required to honor directives. Their job is to resuscitate, and nothing in the law requires them to advise patients of their rights to refuse life-sustaining treatment.

* Hospitals that serve non-English-speaking populations have complained about the government’s failure to provide these life-or-death documents in other languages.

“We have huge Armenian, Asian and Spanish-speaking populations in this area,” says one admissions director, “but we’re having a pretty difficult time sharing this information with them. Apart from the cultural challenges this poses, it is hard to imagine giving somebody their rights when they can’t understand a word you’re saying.”

The Language of Patient Rights * Advance Directive: Any statement about how you want medical decisions made; it may be articulated through any--or any combination--of the following documents.

* Living Will: Although not recognized as a legal document in California, it can nevertheless serve to alert doctors, family, friends and others of your intentions regarding life-sustaining treatment; it takes effect when a patient is permanently unconscious or “terminal.”

* Declaration to Physicians: Recognized under the California Natural Death Act as a way to tell doctors what to do when you are in a terminal condition or become permanently unconscious; useful only if you want life-sustaining treatment withheld, including artificial feeding; not effective if you are pregnant.

* Durable Power of Attorney for Health Care: A signed, dated and witnessed paper naming another person--such as a relative or close friend--as your agent to make medical decisions if you cannot; you can include instructions about treatment you want or don’t want.

How the Law Came to Be

Here are the events leading up to the Patient Self-Determination Act:

* Jan. 11, 1983: Nancy Cruzan, 25, suffers permanent brain damage in an automobile crash on a Missouri country road.

* Oct. 23, 1987: Cruzan’s parents petition a local judge to allow her feeding tube to be removed over her hospital’s objections.

* June 25, 1990: U.S. Supreme Court rules against the Cruzans, saying states can keep patients on life support in absence of “clear and convincing” evidence that the person would rather die.

* Oct. 1990: Congress passes Patient Self-Determination Act requiring that patients be advised of their right to advance directives for medical care.

* Nov. 1, 1990: Witnesses testify in a Missouri court that Nancy Cruzan told them she would never want to live “like a vegetable.” Her doctor terms her life “a living hell.”

* Dec. 14, 1990: Cruzan’s feeding tube is ordered removed.

* Dec. 26, 1990: Cruzan dies.

* Dec. 1, 1991: Patient Self-Determination Act goes into effect.