Dealing With Ethics of Health Care : Project Involves Public in Cost, Technology, Rights Issues

Taking her place behind a makeshift podium, Sister Corrine Bayley scanned the crowd of more than 200 Orange County residents jammed into the Costa Mesa City Council chambers.

“This is not just the beginning of a meeting,” Bayley said, “but the beginning of a movement that I think could be for the ‘80s what civil rights was for the ‘60s.”

Thus began the first public meeting of California Health Decisions--Orange County Project, an ambitious, countywide project sponsored by the Orange County Health Planning Council and the Center for Bioethics at St. Joseph Health System in Orange.

Beginning this fall, it will begin seeking public opinion--and recommendations--on the many difficult ethical issues in health care that have emerged in the wake of life-prolonging medical technology and increasingly high medical costs.

Those issues include such questions as: Is it appropriate in every case to use life-prolonging technology? Do people have the right to health care? If so, how much? What areas of health care should have priority in the allocation of tax dollars?

Modeled after a pioneer project conducted in Oregon in 1983 and 1984, California Health Decisions--Orange County Project is the first such effort to be undertaken in California.

“We are on the ground floor of a movement that can shape the future of health care,” observed Bayley, director of the Center for Bioethics and vice president of St. Joseph Health System. “We have an opportunity to take part in what is becoming one of our most crucial domestic issues: health-care rights and choices.

“How the issues are decided will affect us all.”

California Health Decisions--Orange County Project calls for a series of public meetings to be held throughout the county over a seven-month period.

As outlined at the Tuesday night opening meeting by project director Ellen Severoni, more than 200 small group meetings will be conducted between October of this year and February, 1986. Those will be followed by at least 12 large town hall meetings to be held between February and May.

In October, 1986, delegates who have been nominated at the meetings will meet in a Citizens Health Care Parliament. They will examine all the data collected at the meetings, debate it, refine it and prioritize it.

The result, Severoni said, will be a series of health-care recommendations that will be passed on to policy makers and health-care providers.

“Not so many years ago, a project like this one would have been unthinkable, and that’s because the health-care choices and the costs we face today were also unthinkable not so many years ago,” Bayley said.

In the past few decades, she said, “we have witnessed the development of amazing medical technology and sophisticated forms of treatment that are now in widespread use. If you think about it, we are really living at a time when human beings have an almost unprecedented control over life and death.”

Indeed, she said, it is an age in which “we can start a failed heart; we can keep people living long beyond the time they would (previously) have died, with such things as coronary artery bypass surgery, organ transplants, ventilators and neonatal intensive care units.

“We have artificial hearts and artificial kidneys and research is proceeding on artificial livers, lungs, placentas, and the list goes on. We can conceive human life outside the womb, and we can transplant an embryo from one womb into another. Research is proceeding on cloning, on extending the life span, on genetic engineering and freezing bodies for some future resurrection . . . .”

Bayley said she agrees with a philosopher who declared, “Never has so much knowledge been coupled with so little guidance for its use.”

“And where,” she asked the audience, “will that guidance come from?

“We’re hoping it will come from people like you--people who are interested enough to come out tonight, people who are proud of what our health-care system has done but who are aware that there are significant areas that need improvement.”

Among the 228 Orange County citizens who turned out for the project’s introductory meeting were doctors, nurses and other health-care professionals, representatives of city governments and at least 70 ordinary citizens--people like Gloria Davenport of Orange.

“I think it’s about time for the public to be involved,” said Davenport, a counselor and instructor at Rancho Santiago College in Santa Ana, who described the project as “an opportunity for the public to be awakened to the need to look at whether we can live or die with dignity.”

“I have a deep concern that something be done to make the public free to make decisions without getting legal repercussions,” she said. “I’m excited tonight in seeing the interest in professionals and the lay public.”

Project director Severoni, a registered nurse, was equally excited at the conclusion of the meeting, which resulted in more than 60 volunteers signing up to serve as group leaders, who will be trained to facilitate the public meetings.

“I’m really pleased as punch,” Severoni said. “The momentum is here, the issues are timely and the community is concerned--and that’s what I think I saw tonight.”

Until now, Severoni said, “The public hasn’t been involved in health-care issues” because people haven’t had a formal mechanism to influence how health care is delivered.

Received Commitments

Although Orange County is currently the only area involved in California Health Decisions, Severoni said she has received commitments from health planning agencies throughout the state to replicate the Orange County Project.

As a result of the Oregon Health Decisions project, Severoni said, five other states also are now conducting projects of their own, and the Prudential Insurance Foundation has begun offering grants for “local decision-making in bioethics.”

California Health Decisions, a nonprofit organization with a 37-member advisory board, recently received a $15,000 first-year grant from Prudential. Severoni stressed, however, that the grant is only seed money for conducting the project and that other grant applications are being made. She added that more than $4,000 in donations also has been raised from local hospitals.

Referring to the Oregon Health Decisions project, Severoni said that one consensus from that project was that everyone is entitled to an adequate level of health care.

The Oregon project’s recommendations were turned over to the state Legislature, but she said the Legislature has asked that the project be reinstated: that the organizers go back to the citizens to define exactly what they mean by “adequate level of care” and how that care is going to be paid for.

Although Severoni noted that legislation may come as a result of the California Health Decisions’ recommendations, she told the audience that “we as a community can begin to make some decisions for ourselves that will not require legislation. Our hospitals are in need of some guidelines on how we expect these (ethical) decisions to be made.”

Bayley, who has been working full time in the field of bioethics since 1978, gave the audience an overview of the types of medical and ethical issues Orange County residents will be discussing over the next year.

She spoke of rising health-care costs, noting that nearly $400 billion a year is now spent on health care in this country and that individuals, who spent about $211 on health care in 1965, spent about $2,166 per person in 1984.

Adequate Health Care

And she spoke on the issue of whether Americans have access to adequate health care.

“The answer is definitely no,” said Bayley, explaining that approximately 30 to 35 million Americans--about one in eight people--have no health insurance.

“And when you have no health insurance, it’s very difficult to get care these days, especially if it is not a grave emergency. Health care is becoming more a commodity whether you like it or not.”

She added that “cuts in prenatal care have led, some would say and I would agree, to an increase in infant mortality. It is ironic, I think, that we are cutting back in prenatal care, and yet when a baby is born prematurely, basically because of cutbacks in prenatal care, we spend enormous amounts of money in neonatal intensive care units caring for that child.”

Bayley said the U.S. infant mortality rate is worse than in 16 other industrialized countries “and for blacks in our country it is twice as bad as it is for whites.”

At the same time this is happening, she said, “we are spending about $300 million annually for transplants: heart, liver, kidneys, pancreas and so on, and if the supply of organs increases, it is estimated that we will be spending about $3 billion a year. I’m not saying that’s bad, I’m saying we need to know what the trade-offs are.”

Although “enormous amounts of money” are spent to save one person, Bayley said, “there are hundreds of children who are dying for lack of adequate food and health care in this country, but they are unidentified.”

She recalled Jamie Fiske, the young daughter of a Boston hospital administrator who needed a liver transplant a few years ago. The girl’s father, Bayley said, was “a very articulate, savvy man who knew public relations” and who succeeded in getting his daughter a liver transplant after taking his appeal to the media.

But at about the same time, Bayley said, there was a 6-year-old boy in Chicago whose mother was on welfare. She did not have money, was not articulate, did not have access to the media and, Bayley said, the boy did not get a liver transplant.

“It seems to me, that is not a fair way--or a good way--to be making decisions about who should have access to care,” Bayley said. “We hope California Health Decisions--Orange County Project will give us a chance to be more involved in the kinds of policies and underlying principles we want to govern our health-care choices. We need to deal with it as a society.

“The decisions we face are clearly difficult: decisions about who will live and who will die, decisions about who will decide who will live and who will die, decisions about whether health care is a commodity or a right, decisions about trade-offs between basic care and high-tech care, decisions about how health care should be rationed--decisions, in short, about quality, cost and access.”