Small Groups Tapped for Health Ideas

The five women gathered in the living room of Ina Bliss’ Irvine apartment had perused the questionnaire on ethical health care issues and were in the process of picking out items for discussion.

It was the outset of a California Health Decisions-Orange County Project small-group meeting, one of dozens of such meetings being held throughout Orange County to elicit the public’s opinions and concerns for future recommendations to health care providers and policy makers.

The suggested health care discussion issues range from the right of patients to refuse life-prolonging medical treatment to whether everyone who needs expensive life-saving procedures (such as organ transplants and open heart surgery) should have an equal chance at having them.

As is typical at the small-group gatherings, it didn’t take long for the meeting to evolve into a lively dialogue.

“We are one of the few (industrialized) countries that doesn’t take care of its citizens, and I think it’s a disgrace,” said Molly Lyon of Newport Beach.

“I think this is all very nice,” said Anne Campbell of South Laguna, scanning the questionnaire, “but I don’t see how in the world any government could provide artificial hearts and new kidneys for anybody in the United States who wished it. There simply isn’t enough money to pay for things like that for everybody.”

“Oh, I agree,” said Lyon, “and I’m not talking about that. I’m talking about when people on Social Security get sick. . . . There has to be a base (of health care), I guess.”

“We just have to give up ‘Star Wars,’ and we have to give up arming to the teeth,” observed Lois Shea of Newport Beach.

“Is that an adequate statement for a group such as this?” Irmeli Desenberg of Balboa asked.

“What I think I’m hearing you say,” said group leader Bliss, “is that three of you so far are saying your very top resource priority is social services, which in this case is emphasis on health. . . .”

And so it went for the next 90 minutes, with the discussion veering off into numerous areas, including quality of life for the elderly, the right to die and whether all pregnant women should have access to prenatal care.

By the end of the meeting, which was leavened with occasional dashes of humor, anger and poignant personal observations from dealing with ill or dying relatives, the five women had come up with three recommendations:

- Resources should be made available for primary, or base-line, health care for everyone in the United States.

- Given that there is always $2 worth of needs for every $1 in resources, priority should be given to the elderly and newborns, but medical care should be appropriate to a patient’s health status: Rather than using costly intensive care units, for example, it may be more appropriate for terminally ill patients to spend their final days in an ordinary hospital bed or at home.

- Individuals should make their own decisions on their right to die, not the government, and doctors should not be held liable for whatever direction the patient’s decision takes.

These recommendations, along with those arrived at in the other small-group meetings, will help form the agenda for further discussion of ethical health care issues at larger town-hall meetings to be held throughout the county beginning in February.

For real estate agent Bliss, who is a member of the California Health Decisions Advisory Board, this was the first of three small-group meetings she will be facilitating. And she was pleased with the way it had gone.

Speaking Their Minds

“It went very well, but I would hardly expect it to be any different with this kind of group,” she said, noting that the participants at this particular meeting happen to be friends of hers and that they either are, or have been, politically active and are used to speaking their minds.

Bliss observed that the meeting could have been more structured or focused but, she said with a smile, “part of the fun with being with women like this is sort of the intellectual cartwheels that everybody does. I’m not sure my other two (meetings) will be as stimulating; they’ll just be quite different.”

“The thing I like about this whole concept today,” Molly Lyon observed toward the end of the meeting, “is citizens are taking it upon themselves to be involved before laws are made that affect us that we don’t like. This is what I am for on every level of our society, not just on health decisions. And if this is a trend--God, I hope it continues and grows.”

That, of course, is the goal of California Health Decisions-Orange County Project, an ambitious countywide effort being co-sponsored by the Orange County Health Planning Council and the Center for Bioethics at St. Joseph Health System in Orange.

“I think we do have the best health care system in the world and there are many things we do very well, but there are some things that need fixing,” said project director Ellen Severoni in an interview.

“I think what’s been missing in the health care delivery system is the incorporation of our values; and I think we, the people, have to be involved from the bottom level if they (legislators and health care providers) are going to incorporate our values into policy making.”

Modeled after a similar project conducted in Oregon in 1983 and 1984, California Health Decisions-Orange County Project is the first such effort to be undertaken in California. Though the project currently is focused solely on Orange County, organizers already have begun plans for taking it statewide.

Training Volunteers

The first phase of the project, which was launched last August, involved the training of more than 100 volunteers to conduct at least 200 small-group meetings throughout the county beginning in October.

Group leaders typically have been inviting friends and acquaintances to the small-group meetings held in their own homes. But they also are conducting meetings in churches, schools, hospitals, offices of businesses and organizations, and are available to facilitate small-group meetings in the homes of anyone who wishes to host a meeting. To schedule a meeting, call the California Health Decisions office at (714) 832-1841.

The small-group meetings will be followed by 12 larger town-hall meetings to be held between February and May, 1986.

Next October, delegates who have been nominated at the earlier meetings will meet in a Citizens Health Care Parliament to distill and refine policy recommendations and other issues generated at the town-hall meetings. The result will be the publication and widespread distribution of these findings to health care providers, insurance companies, legislators, researchers and the general public.

59 Meetings Completed

As of late last week, 59 small-group meetings had been completed and 21 more were scheduled, although, as Severoni said, “that number changes on a daily basis.”

“The original idea was to hold the small-group meetings through February, but we’re finding people are responding so well to these small groups that we’re going to keep them going indefinitely,” she said.

Severoni, a registered nurse who is working full time as director of California Health Decisions, said she is more than satisfied with the way the project is progressing.

“It’s just going absolutely as we hoped it would go,” she said. “It’s always such a pleasant surprise to have the public responding this way.”

The small-group meetings have been averaging about 10 participants each, and Severoni, who has conducted several of the sessions, said she is always surprised by the topics the participants choose to discuss.

“All of us (group leaders) have some preset ideas of what people are going to talk about,” she said.

Unexpected Direction

“When I did a group with some elderly people, for instance, I thought for sure they’d really want to focus on that first question (‘If I am in a situation where I am not able to speak for myself and a decision has to be made about using technology to prolong my life, I am confident that an appropriate decision will be made on my behalf’). But they didn’t focus on that at all.

“What’s great about this (project) is it does shoot holes in your preconceived ideas.”

Noting that “the groups are never the same,” Severoni said that one group leader told her that a discussion of the costly treatment of infants in neonatal intensive care units prompted one woman to share her experience as the mother of a severely retarded child.

“By sharing this with other people she was able to shed some light on how complex these issues really are,” Severoni said. “My point is that intellectually, these questions sometimes seem almost black and white, but when you really begin to think about the painful decisions that do need to be made, they’re not so simple.”

Severoni said that when the project began she tended to think “the small groups would have a lot of health professionals in them, but what I’m finding out is most people are not involved with health care, so we’re encouraged by that.”

Severoni noted that a teacher at Laguna Beach High School has even used the project’s questionnaire for discussions in several government classes. “The students’ greatest concern was health care for everyone.”

Participants’ Greatest Concern

That, in fact, is the greatest concern of those who have participated in the small-group meetings to date.

“Of the surveys we’ve done so far, 87% of the people in these group discussions say that everyone in the United States should have adequate health care regardless of their ability to pay,” Severoni said. “But very often with that question there is a lot of discussion as to what ‘adequate’ means, and that’s one of the reasons we’re going to go on with the small groups. That’s one of the things we’re going to define.”

Severoni said the project’s 13-issue discussion guide/questionnaire will be refined for use in small-group meetings beginning in February.

“We’ll take the laundry list of issues that are coming from these discussions and begin to refine it some more, with a focus on defining what ‘adequate health care’ means,” she said.

Another question people in the small groups tend to discuss, Severoni said, is the statement: “We would be better off if we had a national health care plan, whereby health care would be provided by a government agency at little or no cost to anyone who wanted it.”

Groups Split on Issue

“And there,” she noted, “the figures are 38% agree and 34% disagree.”

Severoni said she recently conducted a group that “had some very interesting questions” raised around the following statement in the survey: “If my close relative is in a coma and not expected to recover, I should have the right to direct the doctors to withhold artificial feeding.”

“It seems to me,” Severoni said, “that people are able to come to the conclusion that withdrawing life-support equipment is OK sometimes and that they are able to reach a conclusion, but on that question of withholding artificial feeding it’s much more difficult to reach a consensus. And they raise the term, ‘Well, you’re starving someone to death if you do that.’

“The (withholding of artificial) feeding is one of the big questions right now with ethics. The people in my groups have spent time on that and definitely see a distinction (between that and witholding life-support equipment).”

Severoni said the people in the small-group meetings she has conducted also have come up with some “interesting” recommendations.

“I worked with a class of master’s (degree) level students in health administration,” she said, “and they were very strong in recommending higher taxes on cigarettes and alcohol and having that money channeled to pay for people with problems like emphysema and diseases directly related to cigarette smoking.”

Severoni said the same group also strongly supported the idea of insurance companies and employers providing economic incentives for people who follow good preventive health care practices such as regular physicals, exercise and nutrition programs.

Noted Severoni: “Another reason for the project is to let people be creative because we think the public is creative enough to come up with some innovative solutions” to health care issues.

“One of the things people say is, ‘This is so exciting to sit down and talk about these things.’ The groups that are very interesting are the groups where people don’t know each other. People are seeing that they’re not alone and that everyone is struggling with these issues.”

“As far as I can see none of these issues are black and white,” added Severoni. “That makes even writing a discussion guide an enormous test. We’re trying for the first time to just get these issues on the table and give people an opportunity to discuss them and give them an opportunity to realize they can affect what the outcome will be because people who are in positions of power--policy makers, legislators, providers, insurance companies--all need input from the public with regard to these issues.”

Calls Come In Statewide

As a result of several newspaper articles written about the project, Severoni said, “we’ve gotten close to 100 phone calls from people (throughout the state) who want us to talk about the program and people who want to become involved.”

Severoni said she even received a call from a University of Michigan Law School student who heard about the project and volunteered to come out and do an internship with the project. The law school student will come out for several months, Severoni said, “to help us develop a legal framework for policy making and legislative recommendations that will come from the health care parliament.”

On Tuesday a group of 20 nurses from China who are studying at Golden West College were scheduled to participate in a small-group meeting at the request of their nursing coordinator at the college.

“We won’t be able to include their opinions as Orange County residents,” Severoni said, “but because ethical decision making involves our religious and cultural beliefs as well as medical decisions, we thought we may be able to learn a little bit more about them and how they view these issues.”

A lot of Severoni’s time in recent months has been spent speaking about the project to the Hospital Council of Orange County, nursing home administrators and other professional and public organizations.

“Very often,” she said, “people just say, ‘Thank God you’re doing it.’ ”

First Town-Hall Meeting

The first California Health Decisions-Orange County Project town-hall meeting is scheduled for 7:30 p.m. Feb. 11 in the Fountain Valley City Council chambers.

Other town-hall meetings are scheduled for March 5 in the Orange City Council chambers; April 7 in the Cypress City Council chambers; May 6 in the Fullerton Library, and June 4 in the Hall of Administration in Santa Ana.

Meanwhile, Severoni said, “about 94 volunteers are busy setting up and holding the small-group meetings.

“People want to know what they can do, and what they can do is get a small group organized,” she said. “All they have to do is call the office.”

“These small-group meetings are really the most important part of the project right now--and reaching as many people as possible,” she said. “We want to get those 200 groups in between now and February.”