| Topics: Health California Health Care Divide
Involving the Public in Health Choices Involving the Public in Health Choices. California Health Decisions provides a range of tools to help citizens, providers, the media, and employers meet their health care challenges by identifying their core values, working through key issues, choices, and tradeoffs, and building sustainable solutions. This case study examines how MediCal and non-MediCal Beneficiaries discussed their health values in focus groups in Los Angeles and Orange Counties in November 1993, and the implications for health reform. Case study plus. Contents Case Study Plus: California Health Care Divide Case Study Plus: California Health Care Divide This report was prepared by David Mermin and Richard C. Harwood
of The Harwood Group, Bethesda, Maryland. This project was made possible by generous grants from American Health Decisions, The California Community Foundation, and the Irvine Health Foundation. ©1993 by California Health Decisions, Orange, California. California Health Decisions (CHD) is a nonprofit, nonpartisan organization dedicated to involving the public in health choices. CHD provides a range of tools to help citizens, providers, the media, and employers meet their health care challenges by identifying their core values, working through key issues, choices, and tradeoffs, and building sustainable solutions. Since 1985, CHD has worked directly with tens of thousands of Californians across the state, and has helped inform millions more through the media. Executive Summary The contents of this document are only a summary of CHD's complete, fifty-page focus group report. An order form is included should you require the full document. Background Californians face tough choices as they work to build a better health care system. California Health Decisions (CHD), a private, nonprofit organization whose mission is to involve the public in health care choices, believes these choices must be made with full public participation. CHD's primary objectives are to:
- advance community understanding of health care issues;
- promote the community's role in developing health care policies;
- provide a framework in which community-based health care values can be expressed to policy makers.
While public opinion polls on health care abound, MediCal beneficiaries are routinely left out of the public debate on health care. To shed light on the views of these individuals and to compare them with those of other groups, CHD initiated this research. In focusing this study on the Medical population, CHD is the first to bring this group to the table as California moves toward a managed care system for Medical recipients. This report illustrates that despite the complexity of health care reform, Medical beneficiaries are conversant with the system and can clearly articulate what is important to them. To our knowledge, this is the first time the opinions and values of Medical beneficiaries have been sought in a systematic way with the goal of communicating their concerns to policymakers. It is CHD's hope that this will be only one of many such efforts to include Medical beneficiaries in the design and implementation of managed care programs in California. Methodology CHD commissioned The Harwood Group, a Bethesda, Maryland consulting firm, to conduct six focus groups in Los Angeles and Orange counties in November 1993. Three of the groups were comprised of Medical beneficiaries. The other three consisted of individuals who are not on Medical, and who represent a demographic cross-section of the county population. The objective was to uncover the views of these two groups on health care issues, and to bring out the core values or principles that underlie these views. CHD's focus on values is an outgrowth of nine years of experience in holding conversations on health care around the state. CHD has found that values, the basic principles people hold to be intrinsically important, such as fairness, responsibility and respect, are inevitably at the core of health care issues. A values-based approach helps to "unlock" the conversation on health care, and allows individuals to move beyond jargon and technical policy debates. Major Findings These key themes emerged from the focus group findings: The two groups have major differences in perspective. Those on Medical are most concerned about the lack of respect they encounter and stress the desire to be treated more fairly. The cross-section groups (non-Medical) focus almost exclusively on the high cost of health care. Both groups are critical of the Medical program. Beneficiaries talk about their limited access to quality care and dignified treatment. The program's cost and the perceived irresponsibility and abuse of the system by beneficiaries are highlighted by the cross-section group. There is a dramatic difference in the way each group views advance directives, legally binding documents that allow people to specify their wishes concerning medical treatment if they become unable to do so. The Medical participants are largely unfamiliar with and suspicious of advance directives. The cross-section groups are more receptive to information about these documents. Despite the differences, there is common ground between the two groups. For example, there is agreement on the need to maintain or improve quality of care, provide access to basic services, and emphasize preventive care. Although many of the same values were expressed by both groups, it is clear that the groups are divided on how to define and prioritize these values. Next Steps CHD believes these findings can play a vital role in shaping the development, implementation and operation of Medical managed care systems in California. Clearly, it is critical to develop a system that "works" for all stakeholders. The information in this report will be valuable to:
- Policy makers charged with designing Medical managed care systems in California (16 counties have been designated to date);
- governing boards and staff members of local health systems, as they plan, develop, implement and manage these new systems;
- health care professionals who are or will be providing services to beneficiaries; and
- advocates, community groups, and other organizations involved with Medical recipients.
Acknowledgments California Health Decisions wishes to thank the funders who made this report possible: American Health Decisions
California Community Foundation
Irvine Health Foundation
505 South Main Street, Suite 400
Orange, California 92668
714-647-4920 I. Overview Everywhere you look, people are talking about health care. On TV and radio and in newspapers, pundits and advocates for one group or another debate various proposals to reform the system. Politicians and lobbyists in Sacramento and Washington clash over legislative solutions, with each proposal seemingly more complicated than the one before. There is a cacophony of interest groups clamoring for attention, each pushing a different agenda and blaming a different culprit for the problems we face. The citizens of California are talking about health care, too. In backyards, offices, senior centers, and living rooms, people share their concerns with family and friends: Am I going to lose my health coverage? How can I afford the care my family needs? How can I be sure to get high-quality care? What actions should we take as a state? With major changes already underway in the health care system, and more change inevitable, Californians face some tough choices. Decisions we make over the next few years will affect our health care system for decades, perhaps generations. To make sustainable choices that reflect the will of the people, we need to expand the discussion beyond the experts and public officials, and to start listening to our fellow citizens- to their experiences, their values, their hopes. Building a better health care system will require having all Californians take part in the conversation about what we value, the tradeoffs we are willing to make, and why. The voices of one group of Californians in particular are rarely heard in the public debate: people who are covered by the Medical insurance program. Lacking the resources and formal expertise to be invited onto the op-ed pages and talk shows, often dehumanized by stereotypes, these citizens nonetheless have an important perspective on the health care system and a large stake in change. To uncover the views of these Californians on today's health care challenges, and to compare them to those of other groups, California Health Decisions commissioned The Harwood Group to conduct a series of focus groups in Los Angeles and Orange Counties in November 1993. Half of the focus groups were comprised solely of Medical beneficiaries; the other half included a cross section of adults who were not on Medical The conversations were designed to uncover the starting points of these two groups of citizens on health care issues, and to bring out the core values that drive those opinions. Values are the basic principles people hold to be intrinsically important, such as fairness, responsibility, and respect. We focused on values because, in over eight years of holding conversations around the state, California Health Decisions has found that values like these are inevitably at the core of health care issues. Talking about values helps individuals move beyond the jargon of the health care debate to focus on what they believe to be fundamentally important. It also exposes the underlying conflicts and tradeoffs they must face. We did not try to resolve these conflicts and tradeoffs in these two-hour discussions. A much longer conversation will be needed for that. Instead, we looked for people's starting points—the basic principles and beliefs that Californians identify as most meaningful and important in health care. Understanding these starting points is necessary because they crystallize the conflicts we must address and the tensions we must work through in order to move forward together. In addition to the broad discussion about values, we sought information on three specific issues: the two groups' perceptions of each other; their feelings about "advance directives," which are documents in which patients make known their wishes about treatment in case they are incapacitated; and, from the Medical groups, detailed comments about the Medical program and its services. This report is told in the words and thoughts of citizens as much as possible. While citizens find health care to be a complicated and challenging subject, they can articulate clearly what is most important to them. Several key themes emerge: The two groups of Californians emphasize starkly different values. These conversations reveal profound differences in perspective between the cross-section of Californians and those who are insured by Medical The Medical groups are most concerned about the lack of respect they feel and a need to be treated more fairly, whereas the cross-section groups focus almost exclusively on the high cost of health care—what they themselves pay and the overall cost of the system. Both groups tend to link a wide variety of issues back to these distinctive core values. Indeed, the groups often use the same words to mean quite different things. These conversations suggest that significant gaps must be bridged in order to create common goals for health care reform. The Medical program is held in low regard by both groups. Nobody is fond of Medical, but the nature of the critique varies. The cross-section groups focus on the cost of the program and on perceived irresponsibility and abuse by beneficiaries. The Medical groups are more concerned about the ways in which the program limits their access to high-quality, dignified care, and they have many specific criticisms based on their experiences. Medical beneficiaries are highly resistant to advance directives. The Medical groups express a high level of suspicion, unfamiliarity, and mistrust of the idea of advance directives. Low-income Californians identified some fundamental barriers that must be overcome before they will be ready to embrace the concept of advance directives and actually to fill them out. In contrast, the cross-section groups are quite receptive to advance directives, and even enthusiastic about them in some cases. There is some common ground between the two groups. Despite the wide gaps between them, the Medical and cross-section groups hold certain ideas and values in common. For example, Californians on both sides of the health care divide place a high priority on maintaining or improving the quality of care. People in all of these groups believe everyone must have access to basic health care services, and they would like to see more emphasis on preventive care. All Californians express a desire for more fairness in the health care system (though they often disagree on what fairness means). And both groups agree on the need to change the incentives in the system so they encourage people to make the transition from Medical (and welfare) to work. Expanding these patches of common ground will be a major challenge, but they provide an important base from which to start. Despite the wide-ranging nature of these conversations, you will see as you read this report that the same core values re-emerge again and again in each group. Whether discussing what is important to them in a health care system, criticizing the Medical program, or exploring advance directives, Californians are consistent. Their comments have an internal logic that keeps tying issues back to a small set of simple but profound ideas about what is truly important—for the cross-section groups, affordable care; and for the Medical groups, the need for respect and fairness. For those concerned about the prospects for positive change in our health care system, the findings reported here raise many challenges. Like the nation as a whole, California now confronts many tough choices, including how to restructure the Medical program, extend coverage to the uninsured, control health care costs, and deal with new federal mandates. Whatever decisions are made, successful change ultimately will depend on public involvement in and support for those decisions. But building such public support will require that Californians be able to work through the tough issues—thinking through both their private concerns and what we should do as a society. And the sometimes deep divisions between low-income Californians and their fellow citizens must be understood and addressed in our public debate. Only by placing these divisions "on the table" can the people of our state begin to take the steps needed to bridge them. II. Stark Differences in Health Care Values When Californians talk about health care, they don't say much about specific reforms or legislative changes to the system. They don't use technical language. Polls indicate that most of them can't explain the difference between "managed care" and "managed competition." But their lack of formal expertise and unfamiliarity with the jargon of health care financing and delivery should not be mistaken for ignorance or a lack of concern. Most Californians have firsthand experience with the health care system; all of them care deeply about health care, and they have a lot to say. When you listen to Californians talk about health care, it becomes clear that they are looking for something deeper than a package of programs or reforms. Fundamentally, Californians want a health care system that embodies a core set of values. At first, the two groups engaged here—those covered by Medical, and a cross-section of other citizens—seem to agree on most of these core values. For example, all Californians say they want a health care system that is fair and provides high-quality care. A desire for choice, affordability, and accessibility also comes through in discussions among both groups. But when the conversation goes a little deeper, striking differences are revealed. The two groups often use the same words to mean quite different things. Fairness, for example, seems to revolve mainly around cost issues for the cross-section groups, who focus on getting fair value for their health care dollars. In contrast, the Medical groups discuss fairness in terms of the wide disparities they see—saying that vast inequalities in respect, quality, and access to care are inherently unfair. Indeed, despite a number of common themes, the stories told by these two groups diverge in fundamental ways. These two sets of Californians have different experiences, make different connections, and have different priorities. Is it important that we not turn away from these differences. The fundamental conflicts and tradeoffs revealed in these conversations need to be understood in order to clarify the choices Californians face. Sustainable change is possible if Californians—and their leaders—make the effort to understand their differences and work through the tough choices together. Group Medical Core Values
RESPECT: Making sure all patients are respected as human beings and treated with dignity.
FAIRNESS: Reducing the vast inequalities in how different groups of people are treated and their access to quality care.
Cross-Section
AFFORDABILITY: Keeping the cost of health care down—what people pay and the overall cost of the system.
CHOICE: Maintaining control over your own health care by being able to choose your own providers and treatments.
RESPONSIBILITY: Taking responsibility for your own health by practicing good health habits and not overusing the system. A. The Medi-cal Story "We are poor, but we do have our dignity." Medical beneficiaries need little prompting to launch into an animated, outspoken discussion of health care issues; their concerns are immediate and heartfelt. Two values dominate their vision of what's important in health care: respect and fairness. These Californians feel they are not respected in the health care system, and respect lies at the core of what they're looking for in health care. They also express concern about a pervasive lack of fairness in the system—referring to what they see as terrible inequalities between different groups of people in the way they are treated, the quality of care they receive, and most importantly, their ability to gain access to the care they need. These two values act as the "bookends" of the Medical groups' conversation; the groups connect nearly every issue raised in their health care conversations back to one or both of them. Their agenda is summed up by the L.A. County woman who said, "What we're asking for, what this is about, is equality and respect and getting health care, period." Respect is the core value On a wide range of issues, respect is the crucial starting point, the touchstone of the Medical groups' concerns about health care. Other values remain at a lower priority for these Californians because fundamentally, they feel that their dignity is at stake. "The system does not treat us with respect." The most immediate concern of people in the Medical groups is the disrespectful treatment they feel they must endure to get the care they need. Merely introducing the topic of health care unleashes a flood of stories about rushed, perfunctory, or rude treatment. They accuse doctors in particular of making little or no effort to treat their Medical patients with respect. "The doctor won't even take the time to explain to you what this medicine is for," says an LA County man. An Orange County woman has also felt this lack of personal respect: If the doctor walks into the room and doesn't even look at you, just starts writing right away and asking questions, never looks at you in the face or in the eye, you're not getting the care that you need or deserve. To a person, these Medical recipients are convinced that they don't get respect precisely because they are on Medical They say that once they show the Medical card, they are branded as unworthy of dignified treatment. An LA County woman recounted her husband's experience in the hospital: "The nurses, after he had mentioned the Medical, treated him like a piece of garbage. They wouldn't give him his meds on time. They just dumped on him." And an LA County man told of getting rushed, perfunctory treatment: "They're trying to rush you out of there real quick... They don't take the time to fix you right... With the Medical, they'll stick a pin in your leg and you're out the door." Providers of medical care also are seen as unwilling to respond to the concerns and wishes of their patients. These Californians say providers aren't listening to them, which they consider to be a basic element of respect. According to one LA County woman, "You tell them...I don't want that particular treatment, and they say, well, you take this or you get out." An Orange County woman points out that it doesn't have to be that way: "When I was paying full price, I was getting my questions answered." These patients say that all too often, the questions they ask fall on deaf ears. Clearly, most Medical recipients do not feel they are getting the respect they deserve, and they want that to change. As one LA County woman suggested: "I still think in training the nurses and doctors, they should first instill in them to have respect and dignity with the people because, you know, we are poor but we do have our dignity." "Our time is not respected." For the Medical groups, another potent symbol of disrespect they feel is the hours of waiting they must endure to get care. They see it as a sign that the system does not take their time or their sickness seriously. In one LA County man's experience, "If you go to a hospital, you have to wait seven hours, eight hours"—which he feels is something nobody with private insurance would have to endure. Another LA County man believes the waiting is hazardous: "To have people waiting three or four hours in that admitting room...They could be dying." Whether dying or not, these Californians perceive that their health care needs are treated as a low priority, and it angers them deeply. Some Medical recipients believe they are made to wait on purpose, such as the LA County woman who stated, "They're just making you wait, just for the hell of it." According to many, it's pure discrimination: "They ask, "You don't speak English?" Then you wait. You know, they send them into the back," reports a Latina woman from LA County. Whatever the reason, endless waiting for care is an experience shared by nearly all the participants in the Medical groups. "Even when we are treated well, respect is important." The Medical groups relate fewer positive medical experiences than the cross-section groups. When they consider an experience to be positive, very often it is because they did feel respected. "So far I have been pretty lucky," said an Orange County woman. "I found a good doctor at cropp clinic who treats my kids with respect and they give them the quality care that they need." Another Orange County woman complimented a doctor who "treats me with respect." The one thing these Californians seem to be looking for above all else is respect- and they say it is hard to find. Fairness means better access to care Fairness is the other "bookend" value for the Medical groups. While respect is where their conversation starts, fairness is where it ends up. Most critical to these Medical beneficiaries are the enormous disparities they see in their access to health care as compared to others. They consider such large disparities to be inherently unfair. This definition of fairness is fundamental to the Medical groups, and it shapes their views on a wide range of issues. Their concerns about access to care are pressing and immediate. They report that many providers reject them as patients, and that many services they need are not covered by the Medical program. Without money to go outside the system, and without a wide range of providers from which to choose, they often find it difficult to get the care they need. Often, they punctuate their stories about lack of access by saying "that isn't right!"—meaning, that isn't fair. Their bottom line, as expressed by an Orange County woman, is that "Everybody should get health care. Everybody." "Many doctors and hospitals refuse to provide care to Medical patients. " According to the Medical groups, many providers routinely turn away people who are Medical beneficiaries. An LA County man stated this view succinctly when he said of most doctors and hospitals: "Because you have Medical, they won't take you." An LA County woman complains of being turned away by the hospital near her home: "The valley hospital is one that...Tells you you have to pay. It's a private hospital. If you don't have money, you go out." Because she does not have money, she cannot get care there. A few people even report being denied care in emergency situations. For example, one LA County woman who recounted: My nephew got hurt in the go-cart...He crashed and his leg [was hurt]. I...Called 911. The ambulance came on the spot. They was all rushing to him. When they found out this brother was on Medical [they said] "We really don't think his leg is broken, ma'am, and I'm sure it'll be fine. Why don't you put some ice on it?"... I took him to the hospital myself in the car, and...After they finally decided to wait on him, he walked out of there in a cast. His leg was broke. This woman's implication is clear: The ambulance crew failed to give her nephew necessary emergency care because he was on Medical While not everyone in the group had such stories to tell, nobody seemed surprised to hear them. They view such occurrences as a logical extension of the unfairness they believe pervades the system. Medical beneficiaries may not be surprised about being denied care, but they are angry. They tell these stories in a tone of righteous indignation, enraged by what they see as injustice. Denial of health care to anyone, by anyone affronts their basic values. As an Orange County woman said, "If you need any kind of medical treatment...You should get it. And they should help." "Many services are unavailable because they are not covered by Medical" In the Medical groups, any discussion of access quickly comes around to the question of what services the Medical program covers. This is the one point in the conversations where these Californians Raise cost as a significant concern. Medical beneficiaries, who must pay for any services that are not covered, say that nearly all of these services are priced well beyond their means. To people dependent on Medical, the rules that define what care is available seem arbitrary and capricious. Many tell stories of going without necessary care. One LA County woman recounted: My husband...Goes without heart pills... He had to just quit and go cold turkey without taking them for almost half a month, for two weeks because Medical wouldn't cover it. But if we paid cash, $300, that's half a month's check. Another LA County woman told of a child who needs an operation: The [child] with the kidney, she can't even get on the list unless she can show that she has a minimum of $10,000 to pay for the operation. There are kidneys available for her, but Medical will not pay for the operation. She'd have to raise $10,000 to save this two-year-old girl for her to get on the list. The kidneys are there. But Medical will not pay for them. In some cases, the Medical groups report, when they are not forced to go without care, they are forced to accept lower-quality care because the high-quality services they need are not covered. For example, an LA County woman expressed frustration and bewilderment that an important dental procedure is not covered: The dentist [told me] that tooth can be saved...I can do a root canal and you're going to walk out of here with your tooth. [But] when they found out I had Medical, they said, sister, we're going to pull it out...Because Medical no longer covers root canals. Why pull my teeth out? You know, i need my teeth. It makes little sense to these Californians that certain necessary services are covered while others are not. They say that cost is an issue, but when it comes to health care, they believe the right of everyone to have the care they need takes precedence over cost. For that reason, most seem to agree with the LA County man who said, "I think everything should be covered." "Our choices are limited." When the Medical groups talk about choice, they often connect it back to their core concerns about access to care—that there are too few doctors who take Medical An LA County man described the dilemma: "You can't find a doctor that takes Medical They want to be paid big bucks." Limits on choice also mean a lower level of quality to Medical recipients, as an Orange County woman lamented: The majority of the doctors that accept Medical, I would not select as a personal physician should I have the money to afford it... Because they're like the doctor's version of a slum lord, you know? She went on to tie the lack of choice back to the core value of fairness: They should have stipulations for all the doctors that they have to have a certain amount of Medical patients... Everybody deserves to have good quality care. Fairness also means closing the gaps in respect and quality The Medical beneficiaries in these conversations are concerned about not getting the respect and high-quality care they want. In particular, they see themselves receiving lower quality and a lack of respect in comparison to what others receive. To them, such wide disparities in how people are treated are unfair. "It's unfair that we are not treated the same." An LA County woman spoke for most people in the Medical groups when she said, "I don't want to be treated any different." Yet these Californians say they are treated very differently from other patients. They repeatedly contrast their experiences with those of people with private insurance. An LA County man told of a woman he knows who never has to face the long waits and indifference he sees Medical patients face: "With [private insurance]...They see her immediately. They don't take no long period of time." An Orange County woman has observed the same disparity: "They are taken care of before we are." These Californians firmly reject the right of any group to be treated better than any other, no matter how much they pay. As an Orange County woman put it, "I feel that whether I'm on Medical or not, I'm entitled to that 15 minutes [with the doctor]. Period." And an LA County man asked rhetorically, "We're just as human beings as anyone else. Why can't we get the same treatment?" To the Medical groups, fairness means being treated with the same respect others receive. An Orange County woman put it this way: "I just care about the Doctor treating me like a normal person, you know, like the other people." "Quality is tied to fairness." Most people in the Medical groups believe that the quality of care they receive is adequate, but They believe their care is not nearly as good as other people's. And while it is unclear whether these Californians are demanding equal quality for all, it is clear that they want the large gap in quality to be narrowed. Right now, they feel they are at the bottom of the barrel when it comes to quality. As an Orange County woman described it: "You get low-budget quality is what you get. Like you are a low-priority item." Some complain about having to see inexperienced doctors, such as the LA County man who insisted: "We don't want any first-year intern medical student. We want qualified doctors who are experienced in what they're doing." Others claim that providers just don't make the effort to provide them with high-quality care. An LA County woman told the story of a doctor who failed to do his job properly: My daughter...Got double pneumonia, and the doctor gave me antibiotics and told me take her home and bring her back in two weeks. I had to rush her into the hospital the next day. They said if I would have waited a few more hours she would have died... [the first doctor] didn't care, yes. He didn't check it good enough. In telling these stories, most people in the Medical group focus on the vast difference in quality as the real issue. Over and over, they point to what others receive as an example of the kind of quality they seek. As an LA County man put it, "They see the county sticker, you get county treatment. But if you've got kaiser or anything else, you get quality." And an LA County woman highlights what she sees as a stark contrast between the facilities she Must use and those available for privately insured patients: Downtown in the county hospital, you go and you wait; you get such lousy service. Do you know...they've got their Universal Hospital and all them new buildings back there where they wait on people with Blue Cross, or whatever... It's just so beautiful. This is like four blocks away from the county hospital, and the difference in the services you get. For all of the anguish these people express about the disparities in care, there is a certain tone of resignation in their discussion of such differences in quality. While their demand for respect is expressed angrily and is nonnegotiable, their desire for higher quality care is coupled with little expectation that the situation will change. As in the cross-section groups, people in the Medical groups seem to believe that those who pay more will always get better quality. As an LA County woman explained: Medical pays less to the hospitals and doctors than cash-paying customers... And of course, they're going to do it the cheapest, quickest way they can, you know, because they're getting half the money. Responsibility is a lower priority When asked, the Medical groups respond that personal responsibility in health care is important, but they do not readily bring up this value on their own. To these Californians—who already convey a feeling of being victimized by a disrespectful and unfair system—asking patients to take more responsibility for their own health feels like just another burden. They would like to see the system be more "responsible" by helping people take better care of their health. "Preventive care would help people take more responsibility." Like other Californians, Medical recipients quickly link the issue of responsibility to a need for more preventive care. They think having preventive care more readily available would help patients take greater personal responsibility for their own health. Some are even willing to agree to additional regulations if they could get this kind of help from the system. For example, an Orange County woman suggested: All the people that are on Medi-Cal...Should be required to go to a seminar where they teach on nutrition, on health, maybe on preventive medicine, that type of thing... That ties in with being knowledgeable and responsible. This and similar comments suggest that Medical recipients want to take more responsibility for their health, if they get some help. But that help will probably need to be aggressive in order to cut through the mixed messages they say they receive. As one LA County woman complained about the media: They said take more responsibility for your health care. In the meantime, they said drink all the booze you can, all these appetizing things... They're double standards. They say one time be responsible, and then next time they're telling you, okay, do your thing. "The system should be more responsible." When asked about responsibility, the Medical groups often focus on the responsibilities of providers as well as patients. As an Orange County woman said, "[we need] the system and the people both to become responsible, along with the doctors." An LA County woman also emphasized the doctor's role: A doctor can give you a prescription for antibiotics, and [the patients] go home and do things they're not supposed to do, which just counteracts the medicine... To me, it comes back to the doctor should explain to you. These groups feel that patients can't be expected to be responsible unless the system is responsible, too. Ethnic patterns Each of the three Medical focus groups was made up of a different ethnic group: an African-American group and a Latino group in LA County, and a combined white and Asian group in Orange County. While the substance of what people said was similar in all three groups, there were striking differences in tone. In the African-American group, the dominant mood was anger at the injustices they perceive in the current system. In the Latino group, there was a greater sense of resignation—a feeling that things were unlikely to improve much for them. And in the White and Asian group, people had more of a worried, anxious feeling about the health care problems they face. The sources of these distinctions are unclear, and this study was not designed to uncover patterns based on ethnicity. Still, the contrast is noteworthy and may suggest areas for further research. B. The cross-section story "I think everything comes back to the cost." For the cross-section of Californians from LA And orange counties, one health care value stands out: affordability. They see every problem in the health care system as revolving around cost, and they examine every issue through an economic prism. Other values they identify as vital—choice, quality, responsibility, and fairness—are somewhat less important than affordability; indeed, economic issues permeate their discussions of these values. Finally, respect and accessibility—the fundamental concerns of the Medical groups—are lower priorities for the cross-section groups. The core value is affordability Although the cross-section groups have a wide range of concerns about health care, one message comes through most clearly: Californians want affordable health care, and they are angry because they don't believe they have it. Affordability is what they say they are driving at, but the word they use most often to get at this is "cost." To these Californians, every problem with health care is related to the fact that costs are skyrocketing—both what they themselves must pay and the overall cost of the system. "Health care costs are out of control." Over and over, people in the cross-section groups use words like "shocking," "outrageous," and "out of control" to describe what they pay for health care. Everyone seems to have a personal story to underscore their anger about skyrocketing prices. For example, an LA County man recounted: "I got the bill for my broken leg and I've never seen a bill like that. I was shocked... Absolutely everything except the air I breathe was on that bill." There is unanimity on this point among both people who pay most of their health care bills out-of-pocket and those who receive coverage through their employer or Medicare. Health costs hit home directly for many people. As an LA County man said, "I pay insurance every which way for a million things and, you know, costs are blowing up every which way." An Orange County woman also was concerned about her out-of-pocket expenses: We've always had to pay...About four [to] five hundred dollars a month. Then you get that thousand-dollar, fifteen-hundred-dollar deductible. It seems like we're just paying, paying, paying. The outrage of people in the cross-section groups is not limited to the bills they pay directly. In fact, most do not distinguish between their actual out-of-pocket health care expenses and the overall cost of care—it's all discussed as one big problem of "cost." That is because the cross-section groups gauge the overall cost of health care through taxes and insurance premiums that seem to increase continuously. They know that when costs go up, the money has to come from somewhere- and they believe that "somewhere" is usually their pockets. One LA County man made this connection clear when he summed up his story about an elderly acquaintance: "[Her] bill ran to $87,000. Of course, she didn't have a dime but somebody had to pay it—The government. And you and me are the government." These Californians see cost as the fundamental problem with our health care system. An LA County woman summed up this view by saying, "Each year it keeps going up. It's just too much." And these groups are convinced that it doesn't have to be this way. Most agree with this Orange County woman: "It should be [possible] for everyone to get good health care and have it not cost you an arm and a leg." "Greed, waste, and dishonesty in the health care system are driving up costs." Adding fuel to their anger over rising costs is the strongly held belief among these Californians that much of the rise in costs is unnecessary or illegitimate. The cross-section groups point their fingers at doctors, hospitals, lawyers, insurance companies—any group they think is making excessive profits from the current system. They are certain that somebody is gouging. "You get two or three doctors for payments and it's exorbitant," said an LA County man, claiming that one doctor would be Sufficient in his case. An LA County woman recounted that "My husband was in the hospital and they charged all these things that [he] never used. The bill was just itemized with weird things... It's dishonesty and price gouging." On those occasions when people in the cross-section groups have negative experiences in the health care system, they are often quick to tie those problems back to greed. An LA County man, for example, explained long waiting times in this manner: "The doctors are having their staff overworked [because] they just haven't hired enough people. The economics are there to hire more people. That's just money in their pocket." Whether based in fact or not, these images are appealing: people often look for something or someone to blame when they are angry, and the cross-section groups are certainly angry about the cost of health care. These conversations suggest that any proposed health care "reforms" must squarely address this perception of greed, waste, and dishonesty, or they will not be listened to by most Californians. "Everything is related to affordability." With remarkable consistency, the cross-section groups bring all of their health care discussions back around to the high cost of care affordability is the core value they seem to hold most tenaciously, in part because it is something they believe to be lacking in the health care they now receive. For example, during a discussion of preventive care and personal responsibility, an LA County man noted, "If you take care of the people properly, you won't have to spend that much." When asked what issues are related to fairness in health care, an LA County woman replied: "How much some of the doctors get paid." Also typical of these conversations was the following exchange about quality care from LA County: Moderator: [For better quality treatment,] what do we not have that we should have?
Woman 1: Hospice centers.
Woman 2: In-home care.
Moderator: And what would we have if we had that?
Woman 1: Well, it would cut the cost down...
Woman 2: It's cheaper to have in-home care. One LA County woman summed up the views of her fellow citizens when she said: "I think everything comes back to the cost." Quality is important, especially for the future Like the Medical groups, the cross-section groups talk a great deal about the quality of care. All Californians believe in high-quality health care and want to make sure they and their families receive it. But on balance, quality does not seem to be as urgent an issue for the cross-section groups. Rather than being a pressing concern, quality looms as an issue for the future—something that could go wrong. Most of these Californians believe they now have access to high-quality health care, and they want that situation to continue. "Quality means caring." When they talk about quality, the cross-section groups do not focus on doctors' expertise or on having the latest technology. More than anything, they are looking for providers who are caring. To them, a good doctor is a caring doctor. As an LA County man said, "If [the doctor] is warm and friendly and congenial, and will sit down and talk to you and takes a personal interest, I have more confidence in him." And an LA County woman describes quality care this way: "The doctor comes in; he talks to me; he shakes my hand... He looks at me exactly in my eye, and if I feel bad about something, he'll take a moment and...he comforts me." These Californians do frequently discuss more conventional measures of quality, such as credentials, but they tend to mention such measures and quickly move on. Caring, on the other hand, is often the focus of discussion. These groups say they will turn away from providers who don't provide it. As one LA County woman put it, "If I don't have some kind of feeling that they're caring, then I really don't want to deal with them." "Quality is not a matter of fairness." While the cross-section groups believe everyone should receive adequate health care, they also expect that there will always be a range of quality, and that not everyone will get the very best care. According to these Californians, some people always will receive better care. And they don't think people should be criticized for buying the best quality care they can afford: "I think we're getting better care than [people on Medical], but it doesn't mean we're selfish just because we're getting better care," said an LA County woman. The cross-section groups believe that everyone should receive adequate care, but that disparities in quality are acceptable—a view that contrasts sharply with the Medical groups. An LA County man stated the case bluntly: "[Quality care] is not a matter of fairness. Life isn't fair." While not everyone is so comfortable with the wide range of quality that now exists, there is no clamor to change the situation, as there is in the Medical groups. "Quality is not a problem now" Compared to the Medical groups, the cross-section groups have relatively few complaints about the quality of their care. An LA County woman, for example, highly praises the care she receives: "I enjoy going to the doctor," she says. An LA County man also finds little to complain about: If I have to go to the hospital and I'm treated and the hospital is decent, clean, and orderly, there's got to be a point where you say, hey, this is fine. My wife, god bless her, she had to go to the hospital twice... and there wasn't really anything I could say was bad while she was in the hospital. For most people in the cross-section groups, poor quality care is not a concern now; it is something they are worried could become a concern. For example, an LA County woman expressed her opposition to standardized health care prices "Because of the quality of the place. Some doctors are in very poor locations and [they are] not clean." And an LA County man is afraid of what could happen: "How do you know what's a good doctor? You hear about, oh, this doctor is an excellent doctor... then you read about him in the paper and he's being sued because he left a glove in there." Worries about the quality of care available to them in the future are pervasive among the cross-section groups. But when people are pressed for personal experiences with low-quality care, their conversations usually return to problems with cost, billing, or insurance coverage. Choice is a high priority The cross-section groups strongly believe in choice; they want the freedom to choose their own doctors, hospitals, and treatments. They view choice as the key to maintaining control over their own health care. But when choice is juxtaposed against other values, tensions emerge. Some of these Californians are willing to give up some choice in order to achieve other goals, such as reducing health care costs; others are more resistant to considering tradeoffs on choice in order to satisfy other values. "Choice is the key to high-quality care." The cross-section groups feel strongly that having a wide choice of doctors, hospitals, and treatments is the best way to ensure high-quality care. They express confidence in their own ability to find good care if they are given a wide range of options. "I could find the right doctor if I needed to...[As long as I] have the choice," said an Orange County man. Because of their concern about quality, many people are worried about the possibility that their ability to choose may be limited. As an Orange County woman put it, "There's good doctors and bad doctors, and you should be able to pick." For many Californians, the belief in choice seems to go even deeper—it is an important value in and of itself, something intrinsically worth having. As one LA County woman put it, "I think that the choice for the doctor and the hospital—that's the most important." An LA County man agreed: "The biggest thing would probably be your choice...being able to choose whatever doctor you want to." "A lot of people would give up some choice in order to control costs." Despite the widespread support for choice, the conversation about choice becomes complicated when other values are brought in. As stated, while some Californians are willing to make tradeoffs, others are not. Sorting out these Californians' complicated views on choice will require a longer conversation. Many view choice as important but not an absolute. They consider making tradeoffs, such as giving up some choice in return for lower cost. One LA County man said: If I have a choice, you know, there are some doctors I would rather go to, but that would be like if you want pellegrino instead of tap water in the hospital or something. You pay for that. Others are willing to give up choice for minor procedures but not for major ones: "It depends...If you're going out just to get stitched up for a cut or something like that, it may not matter who the doctor is," explained an Orange County man. Still, others resist the idea that there is a trade-off between choice and, for instance, affordability; they see them as complementary goals. In fact, some people are hopeful that finding ways to lower health care costs might actually increase their range of choices. As one Orange County man stated, "If the cost was down, then you could afford to pay a little more, and pick what you want." Others view choice as a means for keeping costs down. "It goes right back to pick your own doctor," an Orange County woman said, "Because if you don't have good coverage, then you're going to shop for somebody that doesn't charge as much." In the end, while most Californians are not happy about the notion of giving up choice, they are willing to consider it in order to pursue their more important goal of saving money. The wistful comment of an LA County woman was typical: "I would like to have my own choice of doctor, but the cost is really prohibitive." And looking ahead to possible reforms, an LA County man commented, "I think a lot of people would trade choice and convenience for [lower] cost." Personal responsibility is stressed The cross-section groups are eager to talk about personal responsibility. They see poor health habits and abuse of the health care system as major problems that drive up costs, and they want to explore ways to encourage more responsible behavior. Still, most people direct their comments toward somebody else's actions rather than their own. "People should take more responsibility for their own health." Responsibility is an important value for the cross-section groups. They emphasize the need for people to take better care of themselves and to be more responsible about how they use the health care system. An LA County woman, for example, is upset about an acquaintance who isn't taking care of his own health: I know somebody who has the best doctors in the world, and he smokes and he drinks, and he knows he shouldn't, and he's going into emphysema. So what good is a good doctor if you don't listen to them? Another issue that many Californians connect to responsibility is overuse of the system. They believe that some people are too quick to use medical services, especially if they do not pay for them. One Orange County woman warned, "If we're talking about access for everybody...You have to make sure that somebody wasn't going in for every cut and scratch and bruise." And an LA County woman believes that the Medical program is burdened by overuse: It's people's fault sometimes when they [have] just the flu or a little pain and they go right away to the doctor instead of buying medicine in the pharmacy... Because they have that Medical, they go right away to the doctor because they're not going to pay. Some people in the cross-section groups believe there may need to be some way to enforce responsibility. "It may come to the point [where] you actually force people to go for yearly...Checkups in order to maintain their membership in the health plan," suggested an LA Man. However, most Californians shy away from compelling people to do anything; they want people to take responsibility on their own. Overall, the discussion of responsibility in these groups tends to focus on "them" rather than "me." In order to bear down and focus on their own personal responsibilities, people may need a longer conversation, and they may need assurances that they can expect some benefit in return for taking more responsibility. Nonetheless, responsibility resonates strongly as a core value, which demonstrates that people at least want to begin such a conversation. "Preventive care would help people take more responsibility." This is one point on which the cross-section and Medical groups are in full agreement. To the cross-section groups, it is common sense that better access to preventive care and more consumer information would make it easier for patients to take more responsibility for their health. They express some annoyance that the system doesn't provide more such help, which they consider only logical. As one LA County woman put it: Because certain things are not covered, the person cannot be responsible... [People need] educational facilities to educate them on how to be a healthier person, such as diet and the right types of food to eat. True to form, the cross-section groups are quick to tie this issue back to the cost problem. An LA County man spelled out what he sees as an irrational system: My insurance doesn't cover preventive medicine... So [people] let things go internally and the body will get worse, and then the insurance company is going to end up having to pay more for the increased medical care later on to fix the problem, which might have been caught in the early stages if they had paid for a routine exam. An LA County woman used an automotive analogy to make the same point: "Back to preventive, you know, it's like a car. If you invest a little bit for a tune-up you won't have to pay $2,000 for it to break down on you. It's the same idea." And an LA County man said, "If you offer [more preventive care] to people, you can probably bring the cost down." For this bottom-line-oriented group, helping people be responsible by providing preventive care just makes sense. Fairness is tied to economic value Like the Medical groups, the cross-section groups have a lot to say about what's fair in health care. But in talking about fairness, they almost always tie it to questions of cost—rather than to respect for patients or access to quality care, as the Medical groups tend to do. For the cross-section groups, fairness is measured in economic terms. "Fairness means getting your money's worth." Getting good value for their health care dollar is a priority for the cross-section groups. When they feel they are being gouged, they are quick to call that a question of fairness. "When I had to go to the hospital they charged me $10 for aspirin. That's not fair," said an LA County woman. These Californians believe that if they pay for care (even when it is an employer who pays), they are entitled to a high level of service and quality that reflects the high prices they say they pay. For example, an Orange County woman, when asked what was unfair about her health coverage, replied: "If you're being covered and you're paying for it, then you should be able to see a specialist... You shouldn't have to wait two weeks to get approval." They believe that the act of paying creates an obligation on the part of the health Care system to give them good service, and they think it is unfair when that obligation is not met. The bottom line, according to an Orange County man: fairness means "getting your money's worth." "Maybe there should be standard prices." The cross-section groups are troubled by the wide range of prices people pay for the same health care services. Many others share the puzzlement of this Orange County woman over the disparity they see: "When I...hear people say that they pay five dollars for a prescription and five dollars for this doctor and here I'm paying the full, it just doesn't seem to balance." The seeming unfairness of that situation leads many in the cross-section groups to call for standards Or regulation of health care prices. For example, an Orange County woman suggested, "It would be nice if everyone could pay the same amount and get the same amount." An LA County woman agreed: "There should be a standard [fee] for a procedure." However, when they begin to explore the implications of standards, they find themselves engaged in a more complicated struggle to resolve various competing values. As long as the conversation remains focused on cost, support for standards remains strong. But when the focus of the discussion turns to quality, most of these Californians shy away from standards and regulation, fearing they will lose their ability to choose to pay more for top quality. As An Orange County man cautioned, "If there are too many controls, you limit the doctors and the people can't visit the doctors they want to." These conversations went back and forth on the question of standards, without resolving this tension between important core values. "Fairness means everybody pays something for their care." Another fairness issue that emerges in the cross-section groups is a large measure of resentment against those they say do not pay anything for their care—specifically, Medical beneficiaries. The comparison between what they perceive as the outrageous prices they pay and the free care others receive galls people in these groups. As an Orange County man put it, "It seems to me that people who don't have any money get coverage, and the people that are in between...Are paying an arm and a leg." This comparison again points to the importance of cost as a barometer of fairness to these Californians. At other points in the conversation, many people in the cross-section groups express a great deal of compassion for the poor. But when it comes to fairness, they focus on what they pay, and the idea of others receiving free care doesn't sit well with them. An Orange County man summed up these views when he said, "[Medical] is a really good deal. I mean it's everything—plus it's free for these people." In addition, many people perceive a direct connection between the economic squeeze they feel they are in and the level of care provided by the state through Medical "We're paying double," says an Orange County woman. "We're paying for us, and having to work, and we're paying for them to have a free ride." While not everyone in the cross-section groups shares that sentiment, those who do are an angry and outspoken majority. A tough question remains unresolved here: how much should low-income people pay for their care? It is unclear whether the cross-section would demand that everybody pay equally—but they clearly believe everyone should pay something. "Lower-quality care for the poor is unfair." As a soft but insistent counterpoint to the resentment voiced over Medical, some people within the cross-section groups sympathize with those who get lower-quality treatment. An LA County man, for example, worries that "[People on Medical] probably don't get the doctor availability because there are some doctors that won't take them, for whatever reasons." Indeed, several participants in these groups indicated that they believe—as the Medical groups do—that large disparities in how people are treated are inherently unfair. But overall, this situation is not at the top of the fairness agenda for the cross-section groups. They seem to feel that there is Greater unfairness in the cost of health care, which affects them more directly and personally. Access and respect are minor issues Two of the core concerns of the Medical groups—access and respect—receive much less attention in the cross-section groups. In most cases, these issues did not arise on their own in the conversations. When prompted by the moderator, the cross-section groups said that access to care and respectful treatment are important issues, but did not explore them deeply. "I may be unable to afford care someday." In contrast to the Medical groups, the cross-section groups do not describe a daily struggle to gain access to health care services. Thus, access is not a top priority. But when they are pushed to explore their complaints about cost, an undercurrent of fear emerges—a worry that someday, if the wrong things happen, they could lose their insurance coverage and be unable to afford the care they need. Typical of that anxiety about the future is this LA County man's comment: "That supplement I have, it goes up every year and it's going to price me out." An Orange County man worries about losing his coverage: "I'd like for them not to be able to drop you just when you get to the age that you need [health insurance]." Nonetheless, the concern about access is limited to the future. The more immediate access concerns voiced in the Medical groups are not shared by the cross-section groups. "Respect is connected to other, more important values." Another sharp contrast between the Medical and the cross-section groups is that the latter rarely raise the issue of respect on their own. When asked about respect, the cross-section groups say that respect is important in health care, but then the conversation quickly turns back to other values such as the cost and quality of care. Anger and frustration over being treated disrespectfully, which is a constant theme in the Medical groups, surfaces only rarely. This is not to say that the cross-section groups never feel a lack of respect. They, too, are unhappy with long waits or what seems like contemptuous treatment. But there are two clear differences between them and the Medical groups on this issue: they don't seem to feel disrespect as frequently, and when they do, they often voice their concerns in terms of "economics"—that time is money. A good example is an LA County woman who complained about waiting times: "They book you, say, at nine o'clock in the morning and you're in for an hour later. I want to send them a bill and charge them for that time." An Orange County man was even more direct about the connection: "You have to pay for respect." The other key to being treated with respect by providers, according to the cross-section groups, is choice. Most of these people feel that they have the power to do something if they are treated disrespectfully. As an Orange County woman put it, "I have to have respect both ways and if it's not there, it would be my choice [to go to another doctor]." Thus, it would be a mistake to conclude that respect is unimportant to Californians in the cross-section groups. It seems that by and large, they feel they are getting respect, or at least know how to go about finding it. III. Mutual perceptions The Medical and cross-section groups of Californians have plenty to say about each other. They sometimes sound like mutually opposed, hostile camps. Their perceptions of the problems with the health care system—and of the causes of those problems—are often at odds. But there is some common ground as well. In many cases, there is sympathy for the difficulties faced by the people in the other groups, and perhaps even the seeds of a common agenda. A. The cross-section groups talk about Medical beneficiaries "They've got no incentive to get out of it." The cross-section groups are upset about Medical They believe the Incentives are structured so as to actively discourage people from working and getting ahead. Some also have very negative things to say about their fellow Californians who receive Medical; some of their comments portray Medical beneficiaries as lazy freeloaders. But in the end, many people in the cross-section groups express sympathy for low-income people—not only for the "welfare trap" they believe they are in but also, as noted earlier, for the low-quality health care they receive. "The health care system discourages the poor from working." The cross-section groups express a strong belief that the health care system provides a disincentive to get off Medical and welfare. The problem, in their view, is that being on Medical is a "better deal" than working at a low-wage job with no insurance coverage. Thus, there is no incentive to work. Often, the cross-section groups speak sympathetically of those caught in the system. Many see the choice to stay on Medical as understandable and reasonable; they think it's the system that is wrong. To an LA County man, it's perfectly logical: "A lot of people are on unemployment because they can get care under the welfare system that they can't get [if] they are the working poor." An Orange County woman agreed: "As you start to maybe make a little money, you're losing ground. To me, the whole system works backwards; it benefits you not to do anything." Some of these Californians extend blame for this situation beyond Medi-Cal's skewed incentive structure to the perceived laziness of Medical recipients. An LA County man is upset both at the people and the system: I know these folks [on Medical] could go out and find a job, get some form of work, get some form of coverage on their own. But being as they've got this deal going, they've got no incentive to get out of it. An LA County woman is similarly piqued: "I think there's something really wrong... You have people working who can't afford to give their children the same health care as people who aren't." Regardless of whom or what they blame, getting people off Medical is a high priority for the cross-section groups. They want to talk about ways to do that, like providing more health coverage to people in low-wage jobs. In their view, people who are working are the ones who really need help. An Orange County woman summed up the approach these Californians support: "you have to help the people who are really truly trying to get out of there." "Many Medical patients abuse the program." The cross-section groups believe abuse of Medical is widespread, and they are irate about it. For them, this is a major issue that cuts to the core values of personal responsibility, their belief in paying a fair price for care, and their concerns about the overall cost of the system. The perception of widespread abuse is particularly strong in Orange County. The cross-section groups believe that the Medical system is chronically overused by beneficiaries, who they say have little regard for the cost of the services they receive. An Orange County woman claims to have witnessed the overuse: "I could remember people bringing, 'Oh my baby's so ill,' and it would have a 99 temperature, not 98." The anger at this perceived overuse is double-barreled: not only are the overusers viewed as irresponsible (not honoring the value of responsibility), but they also are costing the taxpayers money. For example, when an Orange County woman talked about a neighbor who is on Medical, she first emphasized responsibility: "She takes him to the doctor for every stitch, and there's three little kids, neglected all the other times." Then she zeroed in on the cost issue: "It's costing me, what she does." Perhaps most grating to the cross-section groups is the idea of people getting services without having to pay anything for them—and the belief that this helps to promote widespread abuse. As one Orange County woman put it, "There are people who are cheating and they think, why should I care, somebody else is paying it, not me." A few go so far as to suggest that it's wrong to provide high-quality care through such a program. For example, one Orange County woman said, "I think they [Medical recipients] get excellent care. I think they should be restricted as to what they can get." "There has to be some Medical program for people who truly need it." Despite their concerns about abuse and their discomfort with the notion that people would receive free services, a large majority in the cross-section groups still supports the idea of having a Medical program. A reservoir of sympathy exists for the poor, and most Californians do not believe in turning people away when they are truly in need. Some even question their fellow citizens' perceptions that there is widespread abuse. As an LA County man argued, "I think there are a few people who abuse [Medical], but most of the people who are in the situation of having to use it...have no choice." Support for Medical among the cross-section groups often seems to be rooted in a practical approach to public health. To an LA County woman, providing care for the poor is just smart public policy: I think [Medical] is very good for single mothers on welfare...To give children good health care, because if you think of a lot of foreign countries and the children are begging in the streets, and they don't have their shots... So I think it eliminates all that. In the end, most of these Californians seem to be struggling with competing feelings about Medical On the one hand, they are angry at abuse, but on the other, they don't want to deny care to those who need it. An Orange County woman summed up the dilemma: "There are a lot of people like you're describing that are abusing the system, but there is an awful lot of people out there that truly need help." B. Medical beneficiaries talk about other Californians "I think that they just take it for granted they get better care." Overall, Medical beneficiaries believe people with private insurance are doing pretty well for themselves, and should acknowledge their advantages—especially the higher levels of respect and quality of care they get. The Medical groups particularly resent that they are stereotyped as lazy freeloaders when most say they are trying hard to get off Medical and get health insurance through a job. In fact, they agree with the cross-section groups that the system's incentives do not encourage making the transition to work, and they want that situation to change. This is an important area of common ground between the two groups of Californians. "People with private insurance have it pretty good." To the Medical groups, anyone who has private insurance is doing pretty well and ought to acknowledge it. While they recognize that people with private coverage have complaints, many see those complaints as unfounded, when in their eyes the care those people receive is so much better than they receive through Medical Some are surprised that privately-insured people have any complaints at all. When asked what he thought the cross-section groups talked about, an LA County man speculated: "I think people who have better insurance would probably be stating what they like about it. So they would have some nicer things to say about it." From the vantage point of low-income people, most other Californians are "doing just fine," according to an LA County woman. What upsets the Medical groups is that those with more money expect to be treated better, and don't seem to be bothered by the disparities—some quite large in their view—that exist. This attitude offends their definition of fairness: that all people should be treated similarly. The perceived complacency of other Californians is seen by the Medical groups as disrespectful to them and the problems they face. As an Orange County man put it, "I think that they just take it for granted they get better care...Paying for it." To the Medical groups, these large disparities are unfair; and it frustrates them that the more fortunate seem unwilling to acknowledge the unfairness that they perceive. "The stereotypes of Medical beneficiaries are unfounded." The Medical groups are keenly aware of how they are perceived by most Californians. They know that others think of them as freeloaders. An LA County woman has heard the resentment: "I've heard them say they pay for all these people on Medical" The stereotype follows them everywhere, even into the doctor's office, as an Orange County woman recounted: One time, I went to get my eyes examined...And this doctor, he says..."All you people on Medical want free eyeglasses." I say..."I am here to get my eyes examined, I do not want to walk around wearing glasses, that is not my choice." He says, "No, I see people like you all of the time who want free glasses." This group finds ludicrous the notion that most Medical recipients overuse the system. Why, they wonder, would anyone use health care they don't need? As an LA County woman explained, "Most people don't go to the doctor until they very, very, very [much] need to go. People hate going to the doctor." She then brought the issue back to respect and dignity: "We hate the way we're treated." The idea that most of them don't want to work, or have babies to stay on welfare, is also vehemently rejected. "I've never met anybody that didn't want to work or do something with their lives," said an Orange County man. And a hispanic LA County man argued: "There's all this saying that, especially Hispanics, that they're having children just to get coverage, which is not true." To the Medical groups, these views are unfounded and unfair stereotypes. "There is abuse, but most are not abusers." Many people in the Medical groups agree that there is some abuse of the system. As one Orange County woman observed, "There are a lot of people out there who don't care. They'll take what's given to them for free and not try to improve their situation in life." But most are quick to point out that only a small portion of Medical recipients are abusers. In discussing abuse, they point to others as the real culprits. A few in the Medical groups say immigrants are the source of the problem, like this Orange County woman: "These people from Mexico, these pregnant women come over here, and have their babies over here and use our Medi-Cal...so they can stay here and be on our system. That's abuse." More frequently, the Medical groups consider doctors to be the real abusers of the system. For example, an Orange County woman told of a doctor who seemed to be running unnecessary tests: "It looked like [the doctor was] trying to milk as much as she can out of the system... there is no reason in the world she needed to do a biopsy, when she could have done a simple test." In the end, some Medical recipients tie the question of abuse back to their concerns about respectful treatment. As one Orange County woman explained, "If the doctors were more attentive, and spent more time with their patients, they would be able to weed out the abusers, and the system would not be taken advantage of." "The system discourages us from working." The cross-section groups, particularly those who characterize Medical recipients as lazy, might be surprised to hear strong agreement from the Medical groups that the system discourages work. If anything, the Medical groups say that they are even more frustrated about this situation because they are the ones caught in it. They insist that they don't want to stay on Medical But, to them, the system seems stacked against their efforts to get off the program by finding a job. An Orange County woman describes the paradox: I have a chronic [medical] problem and so I need medical coverage, and when I do work I can't get medical coverage because of preexisting [condition]. So I have to stay on Medical, and I don't like that. An older gentleman from LA County also is frustrated by what he perceives to be a perverse incentive: "I can still do work. But if I do any work, it's going to cut me out of social security and whatever I've got coming. So why should I mess my Medical up?" Both the Medical and cross-section groups clearly share one important goal: change the incentives. Make it easier for the working poor to get health coverage, they say, and more poor people will work. Like their fellow Californians, the Medical groups are strong proponents of helping those who are trying to get ahead. "I think the system needs to help us get off being on the system," says an Orange County man. "They should [arrange it so that] the more you try, the more you get help." C. Mutual understanding "I've heard [them] complain just as much as we complain." Indisputably, there is wide disagreement between the cross-section and Medical groups on many issues. At the same time, there is reason to believe that some common ground does exist. In fact, on several issues, both groups actually have a remarkably good understanding of—and even sympathy for—what the "other" group is saying about health care. The cross-section groups, for example, know that people on Medical complain about shoddy care, unfair treatment, and doctors who won't take Medical patients. Furthermore, many of them think those complaints are quite valid. "I'm sure we get much better care [than people on Medical]," said an LA County woman. An Orange County woman observed that "[Medical patients] have to sit and wait for a long time to see the doctors, and...your best doctors never go on Medi-Cal...so the quality of doctor is not as great." In fact, despite the relative lack of attention to the value of respect in their own conversation, some in the cross-section groups are quick to sympathize with the Medical groups' emphasis on that value. An LA County woman with private insurance summarized the plight of Medical patients in words they themselves might have used: "It takes away...The dignity of the person because of the way they're treated as a result of having this [Medical] card." The Medical groups also reveal a certain sympathy for the concerns of other Californians. Many Medical beneficiaries say they understand the complaints of the cross-section groups about rising costs, and they don't think all people with private insurance have it easy. "I've heard people [with] private coverage complain just as much as we complain," sympathized an Orange County woman. And an LA County woman sounded almost as if she had listened in on the cross-section groups: "They come to an emergency room and they pay a lot. We come to the same emergency room and get treatment and we're not paying anything." It makes sense to Medical beneficiaries that this situation would seem unfair, although they disagree that it truly is unfair. Indeed, an LA County man—a Medical recipient—was able to sum up the cross-section groups' views on Medical very accurately: I think the higher-class people say other things because they work for their insurance, and Medical, you don't really pay for it. They think really it's free service. And I think they're angry because they, themselves, are not getting free service. A necessary first step in getting these two groups to work together is to acknowledge what each has to say. Many Californians on both sides of the economic divide seem to have taken that first step. IV. Beneficiaries criticize the Medical program Medical recipients have mixed feelings about the program they depend on for health care. On the one hand, many express heartfelt gratitude to have any health coverage at all. They say things could be worse. At the same time, they have a number of serious critiques of the Medical program—critiques that are rooted in the values of fairness and respect. Many criticisms of Medical They hate the stigma attached to receiving Medical If there is one thing beneficiaries could change about Medical, it would not be a specific law, regulation, or guideline. What troubles them most is their feeling that both the health care system and the larger society treat them with contempt simply because they get their health coverage from a government program for the poor. The stigma even infects the way they talk about themselves. An Orange County woman, for example, called her fellow beneficiaries "lowlifes," then rushed to explain: "That is what they consider us: lowlifes." How can this stigma be removed? An LA County woman proposed: "Let's change places. Let the rich people get the service on Medical and let the Medical people get the service from blue cross or whatever. Then you'll see how they feel about it." But realistically, most seem to think the stigma is inescapable. An LA County woman explained the reasoning she believed wealthier people would always use: "[They say] we're not working and we should be glad for anything we get, whether it's quality or not." The bottom line, according to another LA County woman: "Because you don't pay for it, they think you're nothing." As long as people on Medical are unable to pay for their care, they believe they will continue to be disdained. They are grateful for the coverage they have—but not satisfied. For all of their concerns about fairness, respect, and low quality, most people in the Medical groups are quietly thankful to have any health coverage at all. An LA County man explained: "I'm glad for somebody to give me something, instead of me getting sick and I can't pay for nothing. [Medical] ain't the best in the world but...I think it's okay." Another LA County man added, "I think it's very adequate." A woman in Orange County also is appreciative: "I'm grateful for everything I get from Medical I'm grateful that they supplement me." Nevertheless, being grateful is a far cry from being satisfied. Fundamentally, the Medical groups believe that health care is a right—something no person should ever have to do without. They believe basic fairness and human decency require it. Thus, beyond the gratitude there is an expectation and a demand that health care—good health care—be made available to them and to everyone in need. An LA County man summarized their mixed feelings: "You do appreciate what you get and you be thankful for that...but...that still doesn't make...the limitations that's in the system right." They believe it's unfair that most doctors won't take Medical Medical beneficiaries would like to see more doctors accept Medical In their view, it should be part of their obligation as doctors to provide some care for the poor—as a matter of basic fairness. As one Orange County woman put it, "If [doctors] are out there to help society, then they should...take a portion [of Medical patients]." Also, as noted earlier, these groups believe that a greater choice of doctors could help address some of their concerns about the quality of their care. They don't want to lose what little choice they have. Many beneficiaries remain suspicious of proposals to change Medical to a managed-care program. For those few who have succeeded in finding doctors they like, the prospect of losing what little choice they have is unsettling. That element of choice is one of the few things they like about Medical: "I have stayed on Medical as opposed to the health care program they offer [at school]," reported one Orange County woman, "because I wanted to keep my doctor." And another Orange County woman stated plainly, "[Medical] lets you choose what doctor you want. That's what I like best." Practical needs Beyond their more general observations about the Medical program, these beneficiaries also named several practical measures that would make it easier for them to get the care they need. While their earlier comments are about what's right or fair, these are about what would be most useful. The suggestions are listed in order of their importance to the Medical groups: A wider choice of providers who take Medical patients, especially in their own neighborhoods. This is by far the most common practical need identified. "It's hard to find a good doctor that will accept Medical," reported an Orange County woman. Hospitals are a problem too. "I think more hospitals need to accept this Medical piece of paper," said an LA County man. The simplest solution, in their view: require all providers to take some Medical patients. This desire for more providers to take Medical patients is a theme that runs throughout this report. More convenient hours (nights & weekends) for doctors, clinics, and pharmacies. An LA County woman described her frustration with limited pharmacy hours: "If you're going to the hospital at two o'clock in the morning because your daughter is sick and you get prescribed something and that pharmacy at that hospital's not open, what are you going to do?" Another LA County woman agreed, "You need 24-hour medical service." Many would like doctors to accept weekend appointments, with one Orange County woman observing that "Most kids get sick on the weekends." Clearer information about what's covered by Medical Many people express frustration at not being told clearly what Medical will and will not cover, which they say makes it difficult to make decisions about their own care. "We don't know sometimes what are the services we can get. I think it's important to know from the beginning," said an LA County man. An Orange County woman agreed: "[Medical should] let us know what they will do and what they won't do prior to going in." Transportation to the doctor/hospital. This is a particular concern in the Latino communities, but others mention it also. "Transportation, I tell you that's a pain to try and get," reported an LA County woman. Many agreed with an LA County man who suggested: "I think if the person doesn't have transportation, transportation should be provided." (For the Latino group) Bilingual doctors. The Latinos in our conversations are all English-speaking, but some still occasionally have trouble with English, which creates a barrier to care: "Some words I can't explain, you know? Then they [ask] me what did you say? And I go around all the words to explain what I want to tell them," recounted an LA County woman. And they express concerns about access to care for their friends and family who don't speak any English Better information about how to stay healthy. As noted earlier, the Medical groups are looking for help in taking care of their own health. An Orange County woman sees a significant need for health education: "If they made [more information] available...a lot of people would opt to learn this knowledge." No doubt this list is important. Medical recipients clearly want action in these areas, but don't be fooled: acting on these items will not address the core concerns of Medical beneficiaries. They say that while these practical changes would make their lives easier, fundamentally they are looking for a more respectful, fairer health care system—and that deeper, more systemic changes are required. V. Dramatic divisions on advance directives One goal of this study was to explore the values, beliefs, and concerns people have about advance directives, which are legal documents designed to ensure that people's health care wishes are honored if they are unable to express them. They allow people to maintain control of their own health care if they are incapacitated, by appointing someone to act as an agent in carrying out their wishes. In our conversations, we paid particular attention to the differences between the views of the Medical population and those of other Californians. We found that dramatic distinctions exist between the two groups. The cross-section groups strongly support advance directives The cross-section groups embrace this conversation enthusiastically. They believe in advance directives and want to make it easier to fill one out. Although few of the participants in our discussion actually have written advance directives for themselves, most of these Californians are strong believers in the concept. If somebody makes advance directives easy, available, and understandable, these people are eager to have them. An Orange County man spoke for many others when he said, "Everyone should fill out [an advance directive]. I wish everyone would go out today [and fill one out]." Advance directives resonate with their core values. The cross-section groups' support of advance directives seems to be rooted in the values they hold most strongly, particularly choice, cost, and responsibility. For example, an LA County woman said that advance directives should be more available so that "Everybody would have responsibility for their own [care]." Others emphasized cost issues, such as the LA County man who believes resources are wasted on people who don't want treatment: "I think [advance directives] would help out a lot and take the strain off of the high cost of insurance and everything else." The value that resonates most strongly when the cross-section groups talk about advance directives is choice—the power to make choices that allow them to control their own care. A typical comment was that of an LA County man who said, "I think it would help people take control." An Orange County man agreed that advance directives are worthwhile because they clarify "your choices or your family's choices." Some want doctors involved, others do not. While most people in the cross-section groups agree that everyone should fill out advance directives, there is still some question about who should be involved in the process. Most believe it should be done by individuals in consultation with their family; some believe a doctor should be involved. One LA County woman stressed the doctor's role: "I think...that you have to have a doctor that talks to you and you get to think about it before you're put on life support and your family has to decide." But several people are hesitant to go beyond the family. After talking about the issue, most seem to agree with the LA County woman who said, "I...think it's up to the family and the person." Barriers include inconvenience, complexity, and a preference to not think about it. The most common reason cited for having not filled out An advance directive is simply that it hasn't been made available. Unless Someone reaches out to them and makes it easy, most Californians in these Conversations say they are not going to go to the trouble of writing an advance directive. It is something they don't think to pursue on their own. As one LA County man pointed out, "It's not something you see when you're filling out your health insurance. They don't put that there." There also is a perception among many people that advance directives are too complicated or difficult to fill out. "How could you come up with anything meaningful [to write in an advance directive]," worried an Orange County man, "When there can be so many different things?" And a few were surprised to hear that advance directives are legitimate. The first question on the whole topic in one LA County group was: "Well, would that be legal?" Several people mentioned a psychological barrier: incapacitation is something that people would prefer not to think about. An LA County woman drew the analogy to a will: "Lots of people don't write a will because they don't want to, you know, just the mere fact of discussing it is, you know, they don't want to think about dying." But the evidence from these conversations is that most people cross this barrier fairly easily. Once the issue is brought up, they are quick to embrace it. The most important and widespread barrier to wider use of advance directives therefore is a very simple one: most Californians say they have never been encouraged to think about it. According to an LA County man, "A lot of people never think about that kind of thing." Another LA County man would like to do one but admitted: "I'm pretty ignorant. I don't know how to go about it." The cross-section groups do not seem to hold much resistance to advance directives; they seem to require only an opportunity to learn and to talk about the issues involved. Resistance is high among Medical groups The Medical groups are much more resistant to advance directives. While they describe many of the same barriers as the cross-section groups—including inconvenience and complexity—they also have a more profound set of barriers to deal with. There is a greater reluctance even to discuss the idea of advance directives, and a number of serious concerns that will need to be addressed before many of these Californians will consider filling one out. There is a great deal of discomfort and unfamiliarity. The overall level of discomfort with the subject of advance directives is noticeably higher in the Medical groups than in the cross-section groups. As an LA County woman remarked, "I don't think anybody's comfortable with it." This feeling is particularly pronounced in the African-American and Latino groups; perhaps there are cultural factors at work. One African-American woman explained that she felt African-Americans are "Usually more prone not to go into death. We don't think about death unless it's upon us." Even after discussing the topic, many in the Medical groups didn't see any point in filling out an advance directive. An Orange County woman felt there was no need to write her wishes down: "As long as your family is aware of your feelings, and you get the best quality medical care, you know, families and doctors confer, and they can usually make a sound decision." Others reason that they don't need an advance directive as long as they are healthy. "I wouldn't do it unless I was in the hospital," said an LA County man. There is strong fear about the consequences of advance directives. In contrast to the cross-section groups, a powerful current of fear runs through the Medical groups' conversation about advance directives. For example, many fear that an advance directive is irrevocable, and they believe they would be unable to change their instructions later if their feelings change. An LA County woman seemed to speak for many when she responded to a question about whether everyone should fill one out: "No, because I might change my mind." Another LA County woman expressed a similar fear: "And they've pulled the plug and you're gone now. You can't even go change your mind." The fear and reluctance seems to be rooted in the extremely high level of mistrust these Californians harbor toward the health care system. Many are suspicious of the motives of anyone, especially health care providers, who would promote advance directives. They worry about being tricked into doing something they don't really want. As one LA County woman put it, "I'd want to know everything before I signed that form... the thing of it is, can you trust what the doctor is saying?" Another LA County woman doesn't think so: "The doctor sort of helps persuade you to sign these forms and you may not be in your right, stable mind, otherwise you wouldn't have did so if you was more stable." Specifically, some Medical recipients fear "having the plug pulled" against their wishes. Several members of the Medical groups are very explicit about what they fear could happen if they fill out an advance directive. There might be some temptation to dismiss these concerns if only one or two people expressed them. However, it seems clear that many low-income Californians believe that people in the health care system would intentionally hurt them in order to use their organs, to conduct an experiment, or to save money. Here are some of the comments we heard: If it's that situation, then they'll say, she's got a heart problem, you know, or she's in a coma, I might as well pull the plug because I might need her kidneys, something like that.—LA County woman A special interest group can come into power...and then decide, well, the money is the issue. Every person in power gets a new heart, a new kidney at our expense.—LA County man What if it gets full in the hospital. Well, let's see, we'll just flick some switches right here, these people are old, they've been in here longer than other people. Get some beds ready.—Orange County woman There might be a medicine that they're trying out and because you're poor, or something, they're going to try it out... they experiment with you.—LA County woman A lot of people...the plug has been pulled on them and they found out that, hey, they could have been saved.—LA County woman If you're [an organ] donor, they might [let you die to get] that part... I'm sure it could happen. I bet you it has happened.—Orange County woman These fears are real. As the above comments were made, nods of agreement were Seen around the room. These conversations suggest that anyone wishing to Explore issues of life and death among Medical recipients must recognize and Acknowledge the depth of their mistrust. The Latino Medical group is more supportive of advance directives than the other Medical groups. Despite some initial discomfort with the subject, the Latino Medical group more readily embraced advance directives when compared with the white/Asian and African-American groups. Once the initial barrier of discomfort was breached, in fact, this group sounded more like one of the cross-section groups than one of the other Medical groups. One woman stated simply: "I don't think they should keep anyone on a machine If they're not going to live without it." And a man echoed the cross-section's concern about choice: "I think it's important for me that although I die, that my wish be respected." The Latino Medical group mentioned one additional reason for filling out advance directives that did not arise in the cross-section groups: a desire not to burden their children. As one woman explained, "I think it's a good idea, because we're getting older and our children are the ones who are going to have to make that decision." Although further study is needed, this message appears to resonate in Latino communities. VI. Meeting our public challenges This study comes at a time of accelerating change in the health care system, both in California and around the country. Building a better health care system is a tremendous public challenge; decisions must be made about what "we" as a society should do. At the same time, Californians clearly are struggling with tough private challenges about the future of their own individual health care. As these conversations indicate, the public and private challenges we face are inherently intertwined for most people, regardless of their economic status or where they get health insurance. Whether talking about public choices or about the care they themselves receive, Californians take a broad view. They resist attempts to compartmentalize issues, or to separate the public choices we all face from their personal experiences and values. Rather, they stress the connections and common themes that link various issues together. When they have a chance to explore those connections, pushing beyond first impressions, Californians from all walks of life say they are looking for a health care system that embodies a core set of values. On that basic principle, all Californians can agree. These findings suggest, however, that we are far from agreement on which values are most important. Even when people use the same words, they often mean different things. For the cross-section of Californians, the most important value they seek is affordability—bringing costs under control so that they and their children can continue to afford quality care. They also stress the importance of choice—especially as a tool for maintaining high quality of care. They want to see more people taking personal responsibility, and they want to get fair value for the health care dollars they spend. Indeed, many of their values are discussed in economic terms, relating them back to the core problem of affordability. Medical beneficiaries, by contrast, focus the conversation on the values of respect and fairness. They are looking for a health care system that respects their dignity and treats them fairly—meaning, in their view, more like the treatment other people receive. Unlike the cross-section groups, they express urgent concerns about access to care, calling it an issue of basic fairness. The Medical groups also stress quality of care, again seeing it as an issue of fairness and respect. In the end, all of their concerns are interrelated; they cannot be addressed one at a time. On a wide range of specific issues—ranging from the shortcomings of the Medical program to the usefulness of advance directives—these two groups of citizens reveal themselves to be far apart in their thinking, their experiences, and even their values. Certainly, there is much hard work to be done before we can forge a common agenda for all Californians. Several unresolved tensions stand out in these conversations. These are inherently difficult issues that require people to balance competing values and confront tough choices and tradeoffs This research indicates that Californians are ready to talk about and work through these issues, but not in isolation; they see all of these questions as interrelated. Creating sustainable change depends upon making these difficult issues part of an ongoing, statewide conversation about our values and our health care priorities. Here are just some of the tough questions and conflicts we need to resolve: What level of services should a program like Medical provide? Nearly all Californians agree that nobody should go without basic health care services, but they have not worked out what they mean by "basic care." This research indicates that Californians are ready to discuss the value tensions inherent in this question, but finding common ground will not be easy. Should everyone receive the same quality of care? Californians seem reluctant to face this question head-on, but it lies at the core of many of their discussions about quality and fairness. The cross-section groups believe that everyone should receive quality health care, but they stop short of saying the same quality; meanwhile, the Medical groups call for narrowing what they see as unfair gaps in quality. All Californians want high-quality health care, but we have not really begun to work through what the bottom line in quality must be, what disparities we are willing to tolerate, or even how to define and measure quality of care. What would a fair health care system look like? The Medical groups see large disparities in the way different people are treated in health care, and argue that such gaps are unfair; to them, a fair health care system provides high-quality, respectful treatment to everyone in need, regardless of what they can afford to pay. The cross-section groups mostly talk about fairness in terms of reducing costs, because they feel they are being gouged. This will be a difficult tension to resolve, because Californians do not yet agree on how to balance the various values different people see as connected to fairness. What do we mean by responsibility? Both groups talk about responsibility, but the cross-section groups focus on the need for individuals to take personal responsibility for themselves, by taking care of their health and paying for their health care services. The Medical groups emphasize our collective responsibility as a society to make sure everyone has access to high-quality care, and for providers to act responsibly. At the moment the two groups are talking past one another and focusing on different priorities. They will need to address each others' concerns. How should we maintain control over our own decisions about care at the end of life? The cross-section groups are focused on this question and are ready to embrace advance directives as a tool for exercising choice and control over end-of-life decisions. The Medical groups are more uncomfortable with advance directives; they express grave mistrust of providers' motives and say that they have more immediate issues to deal with. These low-income Californians do have concerns about end-of-life care, but a different approach may be required in order to engage them more fully in this conversation. How important is choice, who should have it, and how much? The cross-section groups are wrestling with what they see as a key tradeoff between keeping costs down and retaining their choices in health care. Meanwhile, the Medical groups say their choices are already severely limited, and worry about losing the choices they have. Californians clearly want choice in health care, but they are uncertain how best to resolve the tensions they see between choice and other key values such as responsibility and affordability. And they are struggling with the question of whether it is fair for some people to have more choices than others. How should we balance affordability with other core values? Running throughout the cross-section groups' conversation is a single, overriding concern—the need to bring health care costs under control. But they remain uncertain how to balance this concern with other values they identify as crucial, such as maintaining high quality and having a wide choice of providers and treatments. Californians want change, but they want a chance to examine the implications of any proposed reforms and to weigh the tradeoffs carefully. Medical beneficiaries in particular express grave concerns about any budget cuts that would widen what they see as unfair gaps in quality and respectful treatment. Despite these and other tensions, there are hopeful signs as well. Over the course of these conversations, we found some overlaps and common themes. For example, there is broad agreement among wealthy, poor, and middle-class Californians on the need to emphasize responsibility and fairness by making it easier for low-income people to obtain health coverage through work rather than remaining on Medical Also, people in all of these groups believe nobody should go without basic health care services. All Californians would like to see more emphasis on preventive care, and all place a high priority on maintaining or improving the quality of care. Unquestionably, however, the differences between the two groups studied here stand out more than the similarities. Resolving the tensions we found between and among these two groups will be a daunting challenge, but it is one we must accept in order to make progress in building a better health care system for all Californians. These findings highlight three things Californians need to do in order to move forward together: Make the health care debate relevant to people's values. It is clear from this study that when you talk to Californians about health care, they talk about values, and that their views on these values often conflict. The long-term success of the policy choices we ultimately make will depend on deep, durable public support for those choices. Building that support requires a serious effort to engage the people of California in a public dialogue on health care, to set priorities, work through the conflicts, make tradeoffs, and forge compromises. But the current debate lacks meaning for many Californians; it fails to address their core values, or does so only in terms few citizens understand. It is overly technical, driven by policy labels and jargon. The result is that people turn away from the debate -one that is crucial to their daily lives. Understand where people start the conversation. If Californians continue to talk past one another, progress will be difficult. Understanding the different perspectives in this debate is the key first step toward working together. This will help people see that others have differing views—thus broadening their understanding of the challenges and the various concerns that must be addressed. Political leaders, the media, and health care experts have a crucial role to play in encouraging California citizens to take part in this kind of conversation. Without it, it will be hard to create policies that respond to our health care challenges. Build on the common ground. The patches of common ground revealed in this report—such as the frustration with incentives not to work, the need for more preventive care, and worries about access now and in the future—indicate that the seeds of a common agenda already exist. But they are just starting points. Many areas in the discussion are fraught with tensions and competing values. To establish more common ground, we as Californians must explore the different perspectives we hold on health care values, the choices we face, the tradeoffs inherent in those choices, and what we are willing to do in order to move ahead. Otherwise, the health care debate will become mired in divisions and acrimonious debate—leading to gridlock. This report also serves as a warning of what could happen. Already, the very high levels of mistrust and misunderstanding between different groups of Californians are major barriers to productive action. If we continue to divide ourselves, and if the health care debate remains aloof from the values people share, sustainable progress on the toughest health care issues will be difficult or impossible. Without progress on these vital issues, it seems clear that the anger and frustration people express about health care will continue to grow. As change sweeps over the system, the need for a new kind of conversation about health care—one in which all Californians can participate—has never been more urgent. VII. Appendix: A note about methodology The harwood group used focus group discussions to conduct this study. Focus groups are an ideal research method for this type of endeavor, because they provide citizens with the opportunity to think about various issues and topics over the course of a discussion, to talk about their views and feelings in their own words, and to describe the underlying assumptions behind their views. Moreover, this research technique helps to identify the language that citizens use to talk about specific topics. Focus groups also allow citizens to react to new information and proposals during the course of a discussion, which is difficult or impossible through public opinion surveys. There are, of course, limitations to group discussions. First, the research is qualitative, not quantitative. Therefore, the observations detailed in this report should not be mistaken for findings from a random sample survey. They are, technically speaking, hypotheses, or insights, that would need to be validated by reliable quantitative methods before being considered definitive. Still, the insights are suggestive of how Californians view and think about health care issues. Each of the group discussions conducted for this study comprised approximately ten adults. Half of the groups represented a cross-section of race, age, income, and education in Los Angeles and orange counties. The demographic breakdowns of the participants in the cross-section groups were approximately: 48 percent non-Latino white, 23 percent Latino, 19 percent Asian-American, 10 percent African-American; 58 percent female, 42 percent male; 10 percent aged 18 to 24, 52 percent aged 25 to 44, 19 percent aged 45 to 64, 19 percent aged over 65; and 19 percent earning less than $25,000 annually; 35 percent earning $25,000-50,000; 23 percent earning $50,000-75,000; and 23 percent earning $75,000 or more. Health insurance coverage in the cross-section groups was: 13 percent on Medicare; 39 percent in a managed-care plan; 32 percent in a private fee-for-service plan; and 16 percent with no coverage. The other half of the focus groups were made up of adults in Los Angeles and Orange Counties who depend primarily on the Medical program for their health insurance. The demographic breakdowns in those groups were approximately: 32 percent white, 32 percent Latino, 32 percent African-American, 3 percent Asian-American; 74 percent female, 26 percent male; 16 percent aged 18 to 24, 45 percent aged 25 to 44, 23 percent aged 45 to 64, 13 percent aged over 65, and 3 percent unknown. In the Medical groups, each focus group was drawn from a specific racial or ethnic population: one group was exclusively African-American, another was exclusively Latino, and the third was exclusively White and Asian-American. The participants were recruited from a wide range of urban and suburban locations across Los Angeles and orange counties by professional public opinion research firms in Los Angeles and irvine, California. Six focus groups were conducted on the following dates: Location Date Type of group Ethnicity
Los Angeles November 8, 1993 Medical African-American
Irvine November 9, 1993 Medical White/Asian-American
Irvine November 9, 1993 Cross-section Mixed
Los Angeles November 10, 1993 Cross-section Mixed
Los Angeles November 10, 1993 Cross-section Mixed
Los Angeles November 11, 1993 Medical Latino Each group discussion lasted for about two hours and was led by a trained moderator. Participants were promised that their names would not appear in this report in order to respect their privacy. This report was prepared by the harwood group for California Health Decisions. California Health Decisions (CHD) is a nonprofit, nonpartisan organization dedicated to involving the public in health choices. CHD provides a range of tools to help citizens, providers, the media, and employers meet their health care challenges by identifying their core values, working through key issues, choices, and tradeoffs, and building sustainable solutions. Since 1985, chd has worked directly with tens of thousands of Californians across the state, and has helped inform millions more through the media. The Harwood Group is a public issues research and innovations firm located in Bethesda, Maryland. The work of the firm centers on social change—helping public and private-sector organizations to define complex issues, understand the attitudes and perspectives of people and organizations affected by those issues, and design processes, mechanisms, and strategies that promote sustainable change. Back to Health Index | 
