Nurses Seen in Major Patient Advocacy Role : Critical-Care Workers Help Seriously Ill Learn Their Options

By the year 2000, hospitals will be transformed into massive intensive care units. Low-cost clinics will handle the majority of ailments. Hospitals will treat only patients in life-threatening conditions--those who have undergone open heart surgery, organ transplants, suffered massive strokes or traumatic injuries.

And critical-care nurses, once solely dedicated to saving lives, will be as equally skilled in counseling patients and families about their right to a “good” death.

This scenario is growing closer to reality daily, says Sandi Dunbar, president of the American Assn. of Critical-Care Nurses, the nation’s largest organization of specialty nurses. It raises profound implications for the nation’s 150,000 critical-care nurses:

- What legal and medical criteria should be used in deciding not to use heroic efforts to save a patient’s life?

- Should these decisions by health professionals ever be overruled by patients or their families?

- How can nurses cope with carrying out decisions about euthanasia that may conflict with their own religious or ethical beliefs?

The words used to define the subject are themselves debatable. Attorney Richard Scott, a noted patient’s rights advocate, objects to terms like “right to die” and “euthanasia.” Scott said: “Using words like this implies that people have a right to take their own lives. They don’t.”

“The only right terminally ill patients have is to die a natural death by refusing drugs or medical treatment,” Scott said in an interview from his Santa Monica office.

Dunbar, 36, a professor of nursing at the University of Miami, discussed the dilemmas facing critical-care nurses during a recent visit to the national headquarters of American Assn. of Critical-Care Nurses in Newport Beach.

She was visiting the state to launch a campaign to let Californians know that critical-care nurses are now able to help patients understand such crucial rights as the option to refuse treatment or medication, even if it should shorten their lives.

“It’s never an easy thing for a nurse to watch a patient die without intervening,” Dunbar said. “But what we can do is to make a patient’s last days or minutes as comfortable as possible. Nurses today must ask themselves the hard question: ‘Is what I’m doing hurting more than helping?’ ”

Change in Belief

This is a change in the traditional belief of nurses that “everything possible should be done to help save a patient’s life,” Dunbar acknowledged.

But they have been forced to rethink their role because of new technologies that can extend the lives of acutely ill people.

“Life can be prolonged far longer than was imagined just a generation ago,” said Dunbar, who worked as a critical-care nurse in open-heart surgery wards and in emergency rooms for five years before becoming an academician. “Medical technology has reached such a sophisticated level that we have to ask ourselves whether we want to prolong life at any cost, regardless of finances and possible loss of dignity for the patient.”

This was one of the chief reasons the Critical-Care Nurses’ Assn. was founded in 1969, said Dunbar, who holds a doctorate in nursing from the University of Alabama.

The organization now represents 56,000 of the nation’s critical-care nurses. Most of the other 1.5 million nurses in the country each usually care for 10 to 20 patients in a hospital ward, Dunbar said.

Critical-care nurses are assigned to only one or two because the patients are so ill they require constant monitoring, she said.

California is the only state with a law requiring nurses to advise patients and their families on the efforts to be made to extend life as well as other medical care decisions, Dunbar said, based on her study of state laws. Other states have accepted the role of nurses as “patient advocates” on an informal basis.

Dunbar said she hopes that California’s law will serve as a model for the rest of the nation. The association is fighting for similar legislation in other states.

The laws would allow nurses to carry out their new roles without being subject to the occasional opposition of doctors, hospital administrators or local regulators. The legislation would also recognize that nurses are best equipped to serve as patient advocates, Dunbar said. Nurses, unlike doctors who spend only limited time in intensive care wards, are with patients around the clock, she said.

Nurses have no qualms about forcefully conveying patients’ wishes to their doctors because they no longer are “handmaidens of physicians but instead are actively involved in the administration of hospitals and the coordination of patient care,” Dunbar said.

Today nurses work as equals on critical-care teams composed of physicians from various specialties, a respiratory therapist, a social worker, a physical therapist and other medical technicians.

For “planned” critical-care procedures like open-heart surgery, nurses in California provide patients with information about proposed treatment and possible alternatives. At bedside, nurses inform patients about what to expect from their treatment, sometimes using films or pamphlets.

“By understanding how a particular treatment works and its consequences, a patient then can make an informed decision about whether to refuse treatment or to forgo certain medications,” Dunbar said.

Dunbar said decisions on continuing treatment for those who have undergone open-heart surgery, organ transplants or trauma are not difficult: There is hope for recovery for those patients, and it quickly becomes apparent whether medical procedures will help them live or die, she said.

More Difficult Decisions

Terminally ill patients face far more difficult decisions. Their lives can be prolonged, Dunbar said, but sometimes there is no hope that they will recover from impairments such as brain damage caused by massive strokes or accident traumas. And they often are not mentally capable of making informed, knowing decisions about their care, she said.

Some Californians have “living wills” spelling out the extent of treatment they want if they slip into a “vegetative” state that can be maintained only by using a life support system.

Also under California law, an individual can appoint a person to make medical care decisions if he or she becomes incapable of making these decisions.

However, few people have drafted these legal documents. In most cases, families wrestle with making these decisions for loved ones, Dunbar said.

“In California, the courts have ruled that patients or their families can refuse burdensome treatment, even if it shortens the patient’s life,” she said.

California appellate court decisions in recent years have clarified these patient rights:

- In a 1984 case involving William F. Bartling, who suffered from five potentially fatal diseases, the 2nd District Court of Appeal ruled that Bartling had the right to order doctors at Glendale Adventist Medical Center to disconnect his respirator. Bartling, 70, died while his case was pending.

- In a 1983 decision, the same court dismissed murder charges against Southern California Kaiser physicians Neil Barber and Robert Nejdl, who had discontinued intravenous fluids for a comatose patient who was thought unlikely to recover brain function. The court said the “benefits and burdens” of treatments, including food and water, should be evaluated on a case-by-case basis.

But exercising the right to refuse treatment is often an emotionally painful and difficult process.

“Many times, family members are nervous in a health care setting,” Dunbar said. “They need time to assimilate all the information they’re receiving about their loved one’s condition.

Nurses Can Reinterpret

“Nurses help by reinterpreting in layman’s terms what the doctor tells the family by saying something like: ‘What I heard the doctor tell you is. . . .’ ”

Families also are aided in making these difficult decisions, she said, because “in many California hospitals, ethics committees review a terminally ill patient’s particular circumstances to provide guidance on whether treatment should be continued or terminated.”