California Health Decisions : Orange County : Forum Examines Health Care Issues

The first hour largely had been spent on an overview of California Health Decisions-Orange County Project, the ambitious grass-roots effort designed to elicit public opinion on health care issues.

Now it was time for the “open discussion” portion of the project’s first town hall meeting.

And just as has happened at the 119 small-group meetings that preceded town hall, it didn’t take long for the 62 people gathered in the Fountain Valley City Council chambers Tuesday night to begin voicing their concerns.

One woman, a nurse, observed that “one of the problems that seems to be developing in home care with a lot of our patients is that it’s difficult to have an older person who has a chronic problem admitted to an acute hospital unless they have an acute problem. . . . There needs to be some way that they can be taken care of.”

A man called for higher standards for doctors, saying “there’s too much malpractice going on. There are still people out there who should not be practicing.”

Another man, while acknowledging that no one would disagree that people should have access to medical care regardless of their ability to pay, wondered: How is it going to be paid for? “I don’t see any easy solutions,” he said.

The discussion continued for nearly an hour, with issues ranging from health care problems faced by the indigent to the need for a program to provide more personal contact for elderly patients who don’t have relatives to visit them when they’re hospitalized.

“Probably the most important thing California Health Decisions is all about is realizing we have choices and we need to know we have choices, that we have control over some of the decisions that are made,” Ellen Severoni, the project’s executive director, told the audience at the end of the meeting.

“You’re showing,” she said, “that you have an understanding that if you do want to do something about the health care system, we’re going to have to invest some time and energy. There really isn’t one advocacy group out there that’s going to fix things for us. We have some hard choices ahead, and what we need to do is work together.”

Members of the audience--nearly half of whom were health care professionals--were urged to write down their specific health care recommendations on cards provided at the meeting.

Those recommendations will be examined, debated and assigned a priority by delegates at a Citizens Health Care Parliament planned for October. There also will be recommendations generated at the small-group meetings held since last October and at 11 other town hall meetings that will be held throughout the county through June. The result will be a series of suggestions that will be passed on to policy-makers and health care providers.

Judging by those who turned out for California Health Decisions’ first town hall meeting--and the 1,200 who so far have attended small-group meetings--there will be no lack of public input.

“I’m interested in the refusal (to use) life-prolonging systems,” said Missy Kai of Fountain Valley, a senior in the nursing department at Cal State Long Beach, before the start of the meeting.

Kai, who is studying bioethics in a public health class, said she hasn’t made up her own mind on the issue of whether terminally ill patients should have the right to refuse life-prolonging care: “I guess that’s why I’m here tonight, to find out more about it.”

“I’m looking for an opportunity to see the issues discussed and see what the consensus is lining up to be,” said Gary Pyat of Fountain Valley, assistant vice president of strategic planning for Pacific Mutual Life Insurance Co. and a former member of the Orange County Health Planning Council. “I think there are opportunities for technology to find answers for less expensive, but more effective, health care.”

“I think it (the project) is long overdue because there is so much money being spent on health care and citizens really don’t have much to say about it,” said Terence L. Jones of Los Angeles, who is a facilities evaluator for the state Department of Health Services in Santa Ana.

“Should we,” Jones wondered, “spend money on a 68-year-old individual who needs a triple heart bypass or would it be better spent on a small infant born prematurely? These are very difficult issues.”

Following the lead of a pioneer project conducted in Oregon in 1983 and 1984, California Health Decisions-Orange County Project got under way last June under the sponsorship of the Orange County Health Planning Council and the Center for Bioethics at St. Joseph Health System in Orange. The project is the first such effort to be undertaken in California.

But according to Severoni, California Health Decisions has now begun to spread beyond Orange County’s borders. A statewide task force has been formed to replicate California Health Decisions-Orange County Project throughout the state, she said in an interview.

The next California Health Decisions project, which will be sponsored by the Northern California Health Systems Agency, will begin in April in 14 Northern California counties.

Next fall, Severoni said, the Inland Counties Health Systems Agency will sponsor California Health Decisions in San Bernardino, Riverside, Mono and Inyo counties.

Other States Following

California is not the only state following Oregon’s lead, said Severoni. Similar projects are now under way in Hawaii, Washington, Iowa, Illinois, Idaho, Maine, Colorado and New Jersey.

In brief presentations, Ina Bliss, a board member of the Orange County Health Planning Council, and attorney Phyllis Gallagher discussed two of the issues that have been raised most frequently in the small-group meetings: patient rights and access to medical care in Orange County (such as the problems faced by non-English-speaking residents, handicapped people and those without medical insurance).

Addressing patient rights, Gallagher, who is also a nurse, said: “The law as it relates to patient rights has been developing, but it is pointless for the law to develop without citizen input.”

And, she said, “I think that’s one of the main objectives of California Health Decisions--to get the discussion going at the grass-roots level so that we’re not having laws that are imposed from above by a kind of elite society on the grass roots, but rather to have the values of society reflected by agreement and have the laws developed that way.”

Examining the historical development of attitudes toward patient rights, Gallagher quoted Oliver Wendell Holmes, who said, “A patient has no more right to all of the information that a doctor has than he has to all the medicine in the doctor’s saddle bag.”

“You see,” Gallagher said, “information (then) was felt to be a very potent thing and something that probably the patient would misuse and not know how to properly use. And so it was withheld and the physicians felt justified in withholding it because of its potency and because of this rather paternalistic attitude that the health care treatment sector had about patients.”

‘Almost Full Circle’

Today, she said, “we’ve come almost full circle” from that attitude to a point where the courts are saying now that patients have a right to all the information that they need in order to make informed decisions about their health care.

“Unless one has information about one’s own condition and about what kind of treatment is proposed,” she said, “it won’t do to talk about appropriate levels of care and the other more subtle indications of patients’ rights.”

Among patients’ rights, Gallagher said, are:

- The right to accept or reject proposed treatments. Gallagher said this often involves the right to privacy “because privacy has been defined as the right to be let alone, and sometimes that becomes an issue when treatment is extended beyond the time that the person wishes to have it.”

- The right to be free from unnecessary risk of injury. “One can’t understand what the risks of injury are unless you have an adequate disclosure by the person who is choosing treatment options,” she said.

- The right to be the prime determiner of what treatment he or she will have. Gallagher offered a summary of California legislation that she said has led to the present era of patient rights.

In 1976, she said, California passed what is known as the Natural Death Act.

“That was a really forward-looking law that basically said that under certain circumstances a patient could determine that artificial and mechanical life support systems would not be used.”

That law, however, could only be binding under some narrow circumstances, she said. The person had to be diagnosed as terminally ill, there had to be a 14-day waiting period before the directive could be executed, and two physicians had to certify that the person was indeed terminally ill.

Gallagher noted that the law has not been widely used because there have been few people who initially met the requirements in order to make it binding.

Advisory Directives

However, she said, a lot of people over the years have filled out Natural Death Act directives of an advisory nature--the so-called “living will.”

A living will, she said, is “really only a statement of advice, unless you meet all the preconditions of the legislation, and yet it is valuable because it is a statement of your intent at the time that you made the statement and that sometimes can be valuable to a physician and to your family in determining what course of treatment you would want.”

The second tool, which Gallagher considers a “real breakthrough in terms of access to information,” was the Berman Act. Passed in 1982, it gives access to medical records to patients and their representatives.

The third tool--and the one Gallagher thinks “is probably the most valuable in terms of planning for one’s future care in the event one is not able to participate in the decision-making process”--is the durable power of attorney for health care.

It allows the person to designate someone else to “stand in the shoes” of the patient and make health care decisions as that person would make them were he or she able to do so, she said.

Copies of the durable power of attorney for health care, which have been donated by the California Medical Assn., are available at all the small-group meetings and at the town hall meetings for $1. To date, according to Severoni, about 300 copies have been sold.

Update Provided

Sister Corrine Bayley, director of the Center for Bioethics at St. Joseph Health System, who provided an update on the small-group meetings, was pleased with the way the first town hall meeting had gone.

“One of the things I liked about it was people were getting information from one another,” said Bayley. “I don’t think people have a forum to network their interests in health care needs of society. We need to talk to each other.”

Severoni was equally pleased with both the turnout and the discussion.

Unlike the small-group meetings, in which the discussions are often more focused on particular issues generated by the project’s discussion guide, Severoni said, the town hall meetings allow the “people to have a free rein with the issues that concern them.”

The following is the schedule of town hall meetings for March: March 5 in the Orange City Council chambers, 300 E. Chapman Ave.; March 19 in the Anaheim City Council chambers, 200 S. Anaheim Blvd.; March 25 in the Costa Mesa City Council chambers, 77 Fair Drive. All meetings will be held from 7:30 to 9:30 p.m. The public is invited and admission is free.

The remaining town hall meetings, which will be held through June 11, will be in Cypress, San Juan Capistrano, Laguna Beach, Fullerton, Westminster, Irvine, Santa Ana and El Toro. For more information, call Severoni at (714) 832-1841.