‘Right to Die’ Law Prompts Mix-Ups : Health: In the 13 months since the Patient Self-Determination Act took effect, proponents say enforcement has not been easy or uniform.

Patients admitted to mental hospitals after trying to kill themselves are being routinely asked if they want to sign papers telling doctors whether to keep them alive.

Across the nation, some doctors and nursing homes have illegally refused treatment to patients without living will documents.

And in some California nursing homes, residents’ legally binding pleas to die in peace are blatantly ignored.

The first federal law to acknowledge every American’s so-called “right to die” is a year old. But not everyone is celebrating.

While the Patient Self-Determination Act (PSDA) continues to be hailed as a crucial step in motivating patients to make advance decisions about end-of-life care, even the law’s most ardent supporters concede results have been erratic and implementation has not been easy.

At a conference last weekend, more than 100 doctors, lawyers, ethicists, and educators gathered in Pasadena to discuss the fledgling act’s progress. What they heard sometimes disappointed, but did not always surprise them.

“Clearly, we have a lot to learn,” said ethicist-lawyer Vicki Michel of the Pacific Center for Health Policy and Ethics, co-sponsor of the conference with Huntington Memorial Hospital. “Obviously, there are some special challenges and some major errors in understanding the law.”

The act, which took effect Dec. 1, 1991, requires hospitals to inform patients of their rights about health care, including choices about treatment that could prolong their lives.

Called “a medical Miranda warning” by some critics, the legislation was offered by Congress as a prescription for patients who want the last word in their medical treatment.

The law requires that the question--Do you have an advance directive for medical care?--be asked and answered.

It does not require patients to have directives and health care providers cannot use the law to refuse care to the many who do not. Yet, in California, so many providers are telling patients otherwise that state health officials are sending letters warning facilities to stop.

According to State Department of Health Services lawyer Marlys Huez, 45 nursing homes--about one-third of them in Los Angeles County--have been cited for violations ranging from failure to provide community education to failure to notify patients of their rights under the law.

State inspectors--who are charged with enforcement of the federal law--also found that some nursing homes were allowing surrogates to fill out advance directive forms, a practice that violates the very purpose of the law. Investigators also found that some nursing homes were ignoring patients’ final wishes. The most grievous violation, she noted, was where medical staffs administered CPR to seriously ill and dying patients over their objections.

In another case, a nursing facility refused to accept the patient’s son as the legal medical decision-maker even though the patient’s Durable Power of Attorney for Health Care had been properly executed. The case is still being argued in the courts.

Although the state has issued “plans for correction” to the nursing homes cited, staff shortages have enabled inspection teams to revisit just half. The state licenses 1,210 nursing homes, 502 hospitals, 90 psychiatric hospitals, 805 home health agencies and 67 certified hospices.

Because no formal findings have been published yet on the law’s effectiveness, it is unclear how widespread problems might be.

Surveys of health facilities in both California and Georgia found a common pattern of violations of patients’ rights.

Sharon Mass of the multi-agency California Consortium on Patient Self-Determination, conducted an informal follow-up study of more than a third of the state’s hospitals, nursing homes, HMOs, home health agencies and hospices.

The study found that most often it is not a doctor, nurse, or social worker, but a busy and sometimes brusque admissions clerk who asks patients what should be done if they are near death or permanently unconscious.

Mass found that when doctors asked the question, it was usually obstetricians who were “worried about talking to their pregnant patients about such a sensitive subject.” (While children are exempted, all adult patients are included in the law.)

The role of doctors has never been legally defined since as one author of the law put it, “we have no way to force doctors to talk to their patients about death.”

And death, believes Laguna Hills oncology radiologist C. Ronald Koons, is not a comfortable topic for most physicians. “Doctors as a rule don’t want to get involved in your personal philosophy about life and death. They just want to provide medical care for your body. That’s what they’re trained for.”

Doctors’ failure to initiate conversations about end-of-life decisions was a recurrent theme among California questionnaire respondents, said Mass. The law, because its enforcement is tied to Medicaid and Medicare certification, does not directly affect doctors, only the facilities where they practice.

While the study suggested most facilities were trying to follow the spirit of the new law, Mass said her group received “many, many phone calls about what was not being done.”

Mass described but did not name two major California hospitals where inconsistent information was given to staff during training.

“(As a result) some staff members told callers over the phone they couldn’t be admitted but some were never even asked (about their treatment wishes).”

In both cases, the consortium, which wrote the text for state materials on the law, “re-educated” the admissions staffs involved, said Mass.

In a similar look at how the law is working in Georgia, researchers found some problems were caused by patients’ own apathy or fear about life-and-death questions.

“We found time and again that admissions is the wrong--very wrong--place to give out this information,” said Georgia lawyer and researcher Ed Larson. He said people sick enough to be admitted to a health facility can be “frightened, even paralyzed” by questions about how they might want to die.

“Well, at least we’ve begun the dialogue,” said the consortium’s Michel. “It’s important to understand that, for now, the conversation is the centerpiece.”