An Advocate for Ethics in Modern Medicine : Sister Pushes for an Open Forum in Life-Support Cases

Sister Corrine Bayley, director of the Center for Bioethics at St. Joseph Health System in Orange and a nationally recognized expert in her field, has been personally involved in several dozen cases involving medical ethics over the past seven years.

But one that stands out most vividly occurred in 1978, shortly after she became one of the first persons in the nation to teach medical ethics courses in hospitals.

The case involved a 3-year-old New Mexico boy who had been hit by a car while visiting his grandmother in Los Angeles.

Severe Brain Damage

The boy, who had been thrown half a block, was taken to a hospital where, unable to breathe on his own, he was put on a respirator. He was not dead, but he had suffered such severe brain damage that his doctors said he would never regain consciousness.

“The doctors,” Bayley recalled, “were gently recommending that nothing would be served by keeping him on the breathing machine: He would not wake up. And the grieving family finally accepted that. They were ready to let the little boy be in God’s hands.”

But in order to avoid a possible lawsuit, the hospital’s attorney recommended that the hospital obtain a court order before discontinuing the breathing machine.

At the closed court hearing held three months after the accident, Bayley was called in to testify about the Catholic family’s religious beliefs.

“What the attorney for the family wanted to do was say that their religious belief had some weight here, and they should not be forced to go against their religious belief, which was that if there’s no hope for recovery, then we should allow death to come, not force this technology on the child.

Not Obligated to Continue

“I also testified about what I understood to be common medical and ethical practice--that you’re not bound in medicine to do the useless, and if there’s no hope for recovery then you’re not obliged to continue treatment. Stopping treatment is not an unethical--or should not be an illegal--act. It’s one of the tragedies of medicine. Let’s not make it a worse tragedy by keeping him on the machine.

“The judge was at a loss. I mean this is a difficult situation. What he did was bring in as many physicians as he could find to testify about the medical situation.”

The three-month-long ordeal, Bayley added, “was very painful for the family. They didn’t have any money; the husband had lost his job by this time. And their guardianship of the child had been taken away in the meantime (to prevent them from acting on their own before the court case was decided), which was anguishing for them. They could not understand. It made them feel they were doing something bad for their child.”

Gathered in Room

A week after the hearing, Bayley said, “the judge decided that if there’s no hope for recovery, we would not be doing anything unseemly by stopping the treatment, and that the parents could give consent on behalf of the child.”

After first going to another court to have their guardianship reinstated so they could give permission to have the respirator removed, the parents gathered in their son’s hospital room one evening several days later. Also present were the boy’s grandmother, two lawyers, two doctors, three nurses and Bayley, who had become a close family friend.

The breathing machine was removed.

“The little boy continued to breath for about 20 minutes, and we just stood there in silence,” Bayley recalled. “The family and I prayed together, and he died. . . .

“And the father said: ‘Such a short life, and we had a lifetime of love to give him.’ ”

Painful Experience

Bayley said that “painful experience” did two things for her:

“One, it said to me, we should not be going to court with these matters, especially if there’s no disagreement between family members and the physician about stopping treatment.

“Second, we need some internal forum that can give the patient--and the family--due process. We don’t want just to do things behind closed doors. But we don’t need the adversarial setting of a courtroom.

“My thinking then and now was, why couldn’t we have had that kind of hearing in the hospital with an ethics committee with all points of view represented instead of the expense and time delays and emotional experience of going through the court process?”

Times have changed dramatically since 1978, when only about 2% of the nation’s hospitals had ethics committees, which Bayley describes as multidisciplinary groups--including physicians, nurses, social workers, chaplains and often a member of the community at large--that consider the ethical issues involved in the practice of modern medicine.

Today, about 30% of the nation’s hospitals have ethics committees, according to a survey by the American Hospital Assn. And, Bayley noted, in Orange County the number is even higher: 19 of the county’s 37 hospitals have ethics committees.

“Ethics committees are being born every week,” said Bayley, who predicts that 50% of the nation’s hospitals will have them within the next five years.

Bayley, who helped start one of the nation’s first ethics committees--at St. Joseph Hospital in Orange in 1979--is now spearheading a drive to take medical ethical issues one step further--directly to the public.

Last August she helped launch California Health Decisions--Orange County Project, an ambitious, countywide project co-sponsored by the Orange County Health Planning Council and the Center for Bioethics. It is the first such effort in California.

Modeled After Pioneer Project

Modeled after a pioneer project conducted in Oregon in 1983 and 1984, California Health Decisions-Orange County Project this month will begin seeking public opinion--and recommendations--on the many difficult ethical issues in health care that have emerged since the advent of life-prolonging medical technology and increasingly high medical costs.

It will do so by conducting more than 200 small group meetings to be held throughout the county between now and next February. The group meetings will be followed by at least 12 large town hall meetings to be held between February and May. Information about the meetings may be obtained by calling (714) 832-1841.

The project will culminate next fall when delegates who have been nominated at the meetings meet as a Citizens Health Care Parliament. The delegates will examine all the information gathered at the meetings, debate and set priorities and then make a series of health-care recommendations that will be passed on to policy makers and health-care providers.

“It’s a step that includes the public in a way that no other step does, and it seems like an appropriate thing to do,” said Bayley. “Ethics committees don’t deal with all the things that we hope to deal with at California Health Decisions.

“In ethics committees, for example, we don’t talk about such global issues as should there be adequate health care for everybody, and how should it be financed? What should be the trade-offs between funding programs for preventive medicine and programs for high-technology services? Funding, for example, has been cut back for prenatal care, but we’re spending thousands of dollars taking care of newborns in intensive-care units who have been born prematurely as the result of inadequate prenatal care.

“Those are societal issues, and I don’t know any place where those issues are being systematically, seriously studied, except maybe in academic settings. We need to find out what people think about those issues.”

Bayley was speaking at her office at the Center for Bioethics at St. Joseph Health System in Orange.

Actually, her office is the Center for Bioethics. It is a large, stylishly appointed, modern office with a wall-length bookcase crammed with books on death and dying and general ethical issues.

Bayley said her main role as director of the center “is to teach health professionals, and to help them grapple with and deal more effectively with the ethical issues that they face every day.”

She does that through classes and workshops for medical staffs of both Catholic and non-Catholic hospitals. She also helps hospitals set up ethics committees and reviews their policies and guidelines because, she said, “There are common issues that recur in every hospital. It’s helpful not to reinvent the wheel all the time.”

Quarterly Newsletter

Bayley also publishes a quarterly newsletter, Ethical Currents, which is sent to ethics committee members and hospitals across the country, and she recently finished writing a book, “The Ethics Committee Manual,” which she co-authored with Ethical Currents editor Judy Ross, who is a nurse and a lawyer.

While the Center for Bioethics is a resource center for health professionals, Bayley said, “I’d like to be able to do more for ordinary citizens, and I frankly haven’t figured out how to do that in a way that doesn’t get out of hand. I haven’t advertised to the public that I’m here because I think I’d get 25 calls a day.”

As it is, her phone rings constantly.

On one typically busy day, Bayley--who is also a vice president of St. Joseph Health Systems, a holding company for eight hospitals--met with a newspaper reporter to discuss the ethical issues involved with AIDS, then fielded a phone call from a physician who was concerned with how to deal with “ethical questions” in his hospital, and with a lawyer to discuss the case of a brain-dead boy whose father had refused to allow the physician to remove the life-support machine.

On the same day, Bayley also met with the 35-member advisory board of California Health Decisions-Orange County Project, an endeavor that has been taking increasing amounts of her time in the past several months.

Ellen Severoni, director of the project, has known Bayley for two years.

“I told her yesterday, as important as this project is, I just consider it a reward to be working with her,” Severoni said. “I just think that highly of her.

‘An Excellent Job’

“She’s worked up the ladder and done an excellent job. This is a woman who works on Saturdays and Sundays. People come to her with their ethical problems, and she always offers her time and support. You never feel you’re imposing on her.”

Bayley, 44, who is a member of seven different hospital ethics committees, came to her career in medical ethics in an indirect way.

A member of the Sisters of St. Joseph of Orange for 25 years, Bayley--who was born and raised in Santa Ana--earned a bachelor’s degree in English in 1964 from St. Joseph College in Orange. “I got a BA in English and thought that would be my career,” she said, smiling wryly.

Shortly thereafter, however, her superior told her the order wanted her to become a hospital administrator and get a master’s degree in that field at St. Louis University.

“Those were the days when I didn’t question very much,” Bayley said, “so having just finished my BA I became a hospital administrator at the ripe old age of 26.”

Bayley, who became assistant administrator of St. Joseph Hospital in Orange in 1966 and administrator of St. Joseph Hospital in Eureka in 1968, laughed when asked if she discovered she had a flair for running a hospital.

“Nope, I never thought that was for me, and I think I kept on doing it because I just didn’t want to feel like a failure. But I like medical care, and it was a challenge and I learned a lot.”

In 1975, after nine years of hospital administration, Bayley realized “I don’t want to do this for the rest of my life. And I wasn’t sure what I wanted to do.”

That summer she attended summer school at the University of San Francisco, where she took her first course in medical ethics.

“It just fascinated me,” she said. “It combines theology, philosophy, law, medicine and psychology, too.”

The field was so new that there was only one tenured professor of medical ethics in the country at that time, a UC San Francisco professor named Al Johnsen. It was Johnsen who gave Bayley the idea of working for hospitals as an “ethicist.”

After earning a master’s degree in religion and medical ethics from Pacific School of Religion in Berkeley, Bayley approached the eight hospitals operated by the Sisters of St. Joseph of Orange.

“I said, ‘I think I can help you, and I’d like to offer some courses in ethics for health-care professionals and see how it goes.’ I asked them to each pay part of my salary for a year to see how it went. And I had never taught in my life, but I turned out to be a good teacher. I like it.”

Bayley expected no more than six nurses to show up for her first ethics class at St. Joseph Hospital in Orange. Instead, 25 signed up.

“Nurses are faced with difficult ethical issues all the time, and they sign up pretty easily,” she said, “so I have a maximum of 40 now” in each class.

Although other people around the country were giving lectures on the subject, Bayley said she was unable to find anyone else doing ethical teaching in hospitals at the time. There is more such teaching now, she said, but “there still isn’t enough.”

Bayley said she plans to expand her staff at the Center for Bioethics and offer more programs because “the need is clearly there.”

The subject of medical ethics remains as fascinating to Bayley as it was when she took her first ethics class in 1975.

“I think it’s because the questions are so existential,” she said. “I mean, it’s like the meaning of life. You know: How are we to treat people?”

She went to the bookcase and pulled out a book published in 1973 called “Death by Choice.” Thumbing through it, she continued:

A Lot of Ramifications

“The question that’s raised here is, does it make a difference morally if an individual asks for an overdose to end his life if he has a terminal illness? Is that worse than just not treating and allowing the person to die? What is the morally significant difference between killing and letting someone die is the question, and that question continues to fascinate me. It has a lot of ramifications.

“It has to do with how we treat people here and now, but it also has to do with long-range consequences and societal views about suffering and dying and taking life, and a lot has popped up in the media about that lately.”

Which leads her back to the subject of California Health Decisions-Orange County Project.

“It just seems like it’s an idea whose time has come partly because the public has become more sophisticated about ethical issues,” she said. “They know their insurance premiums are going up, and they’re reading more things about the rising cost of health care and the way we’re spending the money we do have for health care, and they’re saying is this what we want?

“I think the public has a better chance of solving some of these thorny problems than anybody else. I think when challenged, they will come up with creative solutions.”