Laurie Zoloth-Dorfman, Ph.D.
Professor of Jewish Studies and Social Ethics
San Francisco State University

The Silence in the Public Square: Universal Coverage and Social Responsibility
Presented at
Envisioning Ethical Atlernatives in Health Care
9 December 1996

As the debate surrounding health care reform proceeded and finally faltered at the Federal level, there has been but few attempts to provide public national leadership to resuscitate it. Now, in the aftermath of the debate, religious leadership must struggle to make a coherent voice heard amidst the cacophony of appeals from experts in politics, marketing, and investment. We see the language of the nature of the good act, the meaning of the medical encounter competing poorly alongside of the language of efficacy and realpolitik. How did universal access, once a commonplace and a presupposition of all of our plans become a marginalized fantasy? Are we diverted into debate about sensational ethical issues affecting a few, while the daily tragedy of the chaotic, unjust and unregulated deep structure of the health care system goes unremarked upon? This paper will argue that we must re-center the arguments on the policy debate and continue to insist upon universal access to health care as a first premise for all of our work. We must call the necessity of a ethical voice as a prophetic voice in the public arena and explore how we can call for the fundamental ethical principle of secure access to health care for all Americans within a common framework as a priority.

As a bioethicist, I address a blinding and complex array of topics. What we mean by "doing ethics", in the casual conversation of the stranger I meet, and on the Internet, and in the topics that we address in the variety of publications that create a national literature of bioethics is complicated, and it changes with the times. We can find heated, carefully argued and passionate debate about topics ranging from genetic screening for deafness as a preferred option for deaf parents, to the ethics of intubated on the dead without prior consent. Interesting as narrative in themselves, of course, and perhaps most interesting as trigger metaphors for larger ethical issues, but such topics hardly need claim our entire attention. If you listen carefully to the discussion about bioethics, you will find a silence there: it is the absence of real debate about what the catastrophe of loss of health and social welfare has meant for our country.

It is not only my field that is diverted. In the Kennedy Institute data base, 1 800-MedEthx only nine articles appeared. with the keywords "universal" and "access" in the last year. There were many article on managed care, and on cost issues, but few focused on the issue of the uninsured.

It was not only the academic literature or the trade discussion that had shifted its gaze. In the NYT database, there were 298 articles about health care: mostly from the business page, and mostly concerning the new business of health care. There was not one article on universal access for the uninsured. The LA Times ran a one significant story last year about the issue: facing the closing of the County-USC hospital, the story raised critical issues about the continuing needs of the poor. But here, too, the bulk of the rest of the coverage was on the shifts of quality for the insured population, changes in conditions for physicians and the business success of the merger marketplace in the health care industry. HMO CEO's salary's, in one memorable piece in 1995, were compared, they were all in the several millions, and one CEO, Malek Hassan, was quoted as saying that his remuneration of 30 million was too low, since he and other like him had "saved health care." In fact, for the best news coverage of the real reformation, the real revolution in health care, the best place to look has been the business pages. The Wall Street Journal advises investors on the best options for purchase, the mergers of the industry, the stock rates of what was the single most productive growth industry in 1995- the California for profit HMOs. You'd have to look elsewhere, or course, to find how the profit was made, but the nursing layoffs, the staff mix changes, are not covered in that press. And the ones outside the marketplace? Hardly of interest at all.

Finally, and perhaps most telling was the observation, now a media commonplace, that the Presidential debate of 1996 barely mentioned the crisis in the American health care system, a topic that dominated the contest in 1992. An observer of the public arena that is the American political election campaign would not have known, for example, that 9.8 million children, 13.8% of all American children, have no health care coverage, a rise of 1.6 (.9%) in the last decade, and a rise even from the time of the 1990 elections. One might think, in doing a scholarly review of the campaign coverage or literature in years hence, that a critical health care issue concerned the number of hours that health insurance allowed a new mother to stay in the hospital.

It was not long ago that the terms for the public discourse were set quite differently.

It was my hope, in constructing research for the ethics of health care reform that the debate on such reform would have been at its peak just prior to the elections in the Fall of 1994 and that such debate would stimulate the widest discourse about the topic of ethics and public policy. But that summer, when I thought that Americans would be following the making of the reform package, the news was preempted by the trial reports of O.J. Simpson. Now, for those of us who are celebrate the value of human community, not all was lost. In fact, that trial might well remind us that robust and mesmerizing civic conversation actually is possible. As a woman born and bred in Los Angeles, I can tell you that there was a particular thrill in seeing multinational crowds of people actually rise up from their living rooms, actually leave their cars, and walk (walk!) on to the freeway with signs they had hand lettered themselves. Ordinary people could tell you quite easily what complex aspects of the criminal justice system meant, far more that could tell you what the details of their healthcare plan covered, millions of people understood exactly what "two-tired justice" was, far more that could explain "two-tiered health care, "and finally, that trial forced, at least for a little while, an concentrated attention to how the serious issues of race divides us, and why that might be the case. Would that race, justice, and community in health care ever got that kind of airtime.

When we collectively turned, a little dazed but sated, from this drama, we saw that the health care debate had reached a sudden denouement: every day brought the news that less could be brokered. It was suddenly common wisdom that nothing--not one even goal would be met prior to the end of the year, not one more American granted access to care, not one less infant dead from treatable causes. Each day, the national press bought us news of the compromises. (It became, for Ethicists, the replacement for the canceled World Series.) Last in the running: extended benefits for home health care and hospice, and then only health care for pregnant women and children, then finally only children. The loss of the democratic majority again this year threatens to close the books on health care reform, a reform that less than 3 years ago seemed certain. Now polls tell us that the enthusiasm for reform has been diverted to other concerns: what is taken by the State in taxes rather than what must be distributed by the State.

The fault for this lies beyond the obvious villains. That the crisis in social welfare remains unaddressed is a challenge not only to the makers of policy, but to the intellectual leadership, theological and philosophical as well as political, in this country as well. If we are to take seriously the call to participate in the public square, to claim the notion of a renewed citizenship, it will mean taking a rigorous look at our own role in the production of ideology and social capital, of dreams and vision.
The struggle for significant health care reform came tantalizingly close. For those of us who had been working on the problem as a central research topic, it created an odd sort of political Doppler effect: here came the Harrison campaign, here all the national media, here Clinton, and Bush, and Perot, and every local politician. Ad then they all moved on. But someone had noticed all that talk about one trillion dollars spent on health care and they were the folks that stayed.

In January of the next year, just 6 months after the New York Times carried a daily health care reform update article, I was in Washington DC for a conference called Health Care Reform: the Search for Answers. It was a small conference, with many Ethicists, a book was published from the papers, but there were not in attendance the policy makers, politicians or health care executive leadership that might have been expected. But down the hall at the same hotel, there was a enormous conference. It was the National Convention of a Managed Care trade association. And thousands of people, administrators, physicians, benefit managers. The energy, and frankly the search for answers, was happening in the main room, and ethics was not even on the agenda.

This was reflected in healthcare policy making as well. In 1993, the most interesting national forum in ethics centered around the Clinton Health Care plan-to be involved in National Bioethics was to be invited to the Bioethics Working Group. The literature was full of the Oregon plan, and the citizens decisions movement. By 1995, the national energy and Presidential bioethics grouping were called together to address the ethical dilemmas of history. The radiation experiments and the appalling lack of consent that surrounded them is a terribly critical topic, but one that drew our attention to choices made 45 years ago.

Why is this? Here is a partial listing:

1. There are many terrible problems and we need to address all of them: for example, Tuskegee has not ever been accounted for, we are still confronted with problems is what we consider dead and alive, we cannot even get physicians to honor our elaborately conceived PSDA policies, and now we have to have closely argued debates on physician assisted suicide.

2. We get paid to talk, and we talk about what we get paid to. No one is interested in hiring us to talk about the topic of universal health care coverage, which is beginning to have the valence of a pathetic and futile cause. In The System, the book describing the collapse of the reform movement the authors detailed how the idea of universal access went from being obtainable to having an unsuccessful aura of a marginalized protest movement. Administrators, educators, and physicians want to hear about full-risk capitation or business ethics.

3. We are after all, paid not by consumers, but by the very forces that we critique. We respond to the regulations and they are driven by the science of the institution. When the Joint Commission asks for mission statements for the corporations who organize the healthcare system, we are called to comment on them, or when a researcher discovers a new way to test for breast cancer, we are asked to reflect on this.

4. We, like everyone else are fascinated by the peculiar narrative. I could tell you tales from the Children's Hospital where I consult. The elaborately conceived preemie twins, born 4 weeks apart, the 23 weeker and her 27 weeker twin, who should live? That this month, like any other month, another 100,000 people lost health care coverage is less interesting. We respond to narratives in which we feel we can play a part: the role for the bioethicist, for the wise pastoral care provider, the analysis and the denouement of the story.

5. We respond to the givenness of the world: managed care successfully did what public discourse did not do. In two years, the entire health care climate in California is revolutionized far more radically than we would have dared. Patient choice, the closure of hospitals, the advance of home care, the role of the family, the income and the ability to make unilateral decision by the physician: all are dramatically changed. Now this has happened in perverse ways-for example, the physician is partnered not with the patient but with the patient's benefits manger, but it has happened with a speed and effectiveness we could not have dreamed possible. Health care costs are no longer increasing at a rate of 17%-20% a year. In the fiscal year that ended in October, Federal Medicaid spending grew at just 3%, probably because of the greater use of managed care.

6. We, too, are interested in what is happening to -us- after all, most of the people that work in reform, have insurance, suddenly, we too are on the chopping block, our insurance, our doctors, our job is in trouble.

7. We want to win in the marketplace of ideas and power, too. We do not want to be held back with association with loser ideas, lost cases. We, too struggle to learn all the new language.

This is a paper directed not at how the problem is structured. I hope that you all know that. We are far beyond the recital of the litany of horrors. It is hard to walk in the world without noticing. Medicare recipients, what there is left of them, are being gathered into competing, free market inspired HMOs. They are actually being marketed, which is why for the first time, inner city buses have ads, and soul and rap stations have ads for plans, and they all feature persons of color. In the inner city Emeryville the ad for the Blue Cross HMO for Medical recipients is displayed next to the cigarette ad "healthy living"

We have decided that managed care is a very good thing for the very poor at least, and the much advertised necessity for choice not so critical. Even for the employed, covered by robust health plans, the marketplace reorganization has affected all health care delivery. The for-profit HMOs have complex problems of their own, hundreds of details that create ethical dilemmas for caregivers. For example, the formulary for pain medication for Medical patients, in many of the cases the dying child at the pediatric medical center that I consult in is different from the private payers. In states such as Georgia, epiderals are not covered--they are not considered medical necessities. Much of what we focus on in the physician patient relationship, for example, has become nearly comical in the face of the advent of the 7 minute office visit. We have much to worry about. But I contend that we cannot realistically begin the warrant for such comment unless we first reflect on our essential responsibilities.

But we need to do more than worry. We need to be responsible for directing civil conversation the problems of good and evil. The very least is of this is to insist on a persistent address to the deep structure of health care itself.

In America, nearly 45 million of our citizens do not have access to heath care services-not even to the 7 minute office visit or the reduced formularies. This figure does not begin to include the sojourners who are not citizens, and this is not to speak of the growing inability of even the insured to acquire the attention they need when they are ill, elderly or disabled.

This number has grown, since the debate began, steadily, and nothing in the reorganization has reversed this trend. When health care costs began to make a small, slow drop in 1995, the cost savings may have pleased employers, but they as a group did not claim that they then could re-benefit employees who they did not previously cover. In large part the reason that fewer children are covered by healthcare than at the inception of the debate is that one way that employment benefit packages are reduced, and healthcare spending lowered is to not insure dependents, or to institute large co-pays for them.

Let me quote from a more hopeful time: Summer of 1994, just prior to the midterm elections seemed a last hope for health care reform. By June it was clear that the ambitious plans for health care groups, and insurance pools had been lost, and plans were being brokered for universal-minus coverage (Clinton Lite was being sold, like so much summer beer)

We knew that universal minus 5, 10 or 15% was inadequate. Taught by our colleagues in economics, we knew that the premise was flawed. Further, we remembered that we had a deep ethical obligation to advance: universal access was a basic need.

Remember that we were not talking about Bolshevism. We were simply noting that the USA could have an access plan similar to every single one of the industrialized and much of the developing world. We did not stipulate the economic plan needed to create this. We merely called for the recognition that the principle was primary. We took out a full page ad in the New York Times. Here is the text

"As special interests and political compromises have come to dominate the debate about health care reform, some elected representatives have lost sight of the fundamental ethical value which underlies public support for health care reform. As bioethicists, we wish to affirm the principle that in the need for health care, Americans support universal health care as community with common needs and a shared fate.

No American can be secure unless all of us are secure. To omit coverage for 10% or 5%--26 or 13 million Americans--abandons this principle. Through misfortune, or change in life circumstances related to employment, family or location, any of us can lose the essential and basic security of access to health care. No one should be excluded from health coverage: not the executive disabled by a chronic disease, not the person in small business, not the person who is self-employed, not their children, and not those with a mental illness, or overwhelming troubles that prevent them from applying for future coverage.

We are dismayed to see political horsetrading jettison this fundamental ethical value, The principle of securing access to healthcare by including all Americans within a common framework, is not realized by adjustments in insurance regulations. It is not accomplished through reimbursements to a few more selected groups of people. It is not fulfilled by vague promises of action by a new commission or Congress. sometime in the next century. Furthermore, no partial solution is likely to enable our nation to contain health care costs.

It is time for Congress and our President to deliver on a new national commitment to the fundamental ethical value: that everyone has a secure health care coverage.

(This was drafted by Dan Wickler, Dan Brock, and Steven Miles)

In getting the signatures for the text, many of us encountered hesitancy, reluctance to do an act "so political." Some of my colleagues were afraid of the consequences. What would the dean, or the client think? The tragedy was that the act was nearly unnoticed. There were no consequence.

In years since, we have seen just what this turn from the stranger has meant. The closing of the county systems, as they are driven into insolvency by a competitive marketplace, and the deepening of some epidemics of the poor, TB and measles. But other signs are more subtle. Last year there where a few signal cases of meningocoele meningitis. The families were poor, uninsured, Hispanic, perhaps undocumented. While we treated the catastrophic outcomes in the ICU, and after the multilimb amputations, we treated the surviving children, we did not cover the prophylaxis, a drug called Rifampin, which would surely prevent the disease in the rest of the family. When the winter months wore on, and more and more children, all with Spanish surnames, all over the Bay Area came into the hospital, one physician finally told me that the pediatric residents had finally gotten frustrated enough, went down to the pharmacy, and bought the drugs themselves. It cost $187 dollars for vaccine for a family of six. But by then it was a little late. Now cases come in, and they come in from everywhere, insured and not, poor and not, Hispanic, black and white.

The period that we now face offers us another chance at the health care reform that has eluded us in the past. One last chance. If we could take seriously such a responsibility, our collective voice might have an impact. Now in Congress, new bills seek to build on the Kennedy-Kasselbaum effort. The White House has released plans for proposal for small business support for healthcare purchases for their workers through voluntary purchasing coalitions. The Labor department has released plans to protect retiree benefits. HMO executive discuss their expectations for Federal regulation, and reconsideration of the way that Know Keene waivers have allowed for full risk contracting. Gag rules are under rhetorical and perhaps real attack, and the rise in surgical outpatient procedures--mastectomies--brain surgeries--are now finally being noticed. And finally, Representative Bill Thomas of California, the republican chairman of the Ways and Means health Subcommittee is expecting a "detailed proposal" from the White house next year, addressing the need to expand coverage to more children.

These are all good efforts, and they should be supported, as the efforts, for example in Texas, to expand pediatric coverage, need our support and analysis. But I contend that we can and we ought to do more. We need to not merely follow and analyze this legislation, learning what is "politically expedient" from the commentators. We must re-center our gaze at what we can claim is what we know: that there is in fact a "basic ethical principle and a fundamental ethical value, that everyone, has secure health care coverage."

What will this require of us? Two difficult things.

1. We must consistently provide leadership in the political discourse of health care reform.
We cannot simply accede to the commonplace that reform is politically dead. At the minimum, we need to reopen the debate about universal access. In our states, in our publication, in our teaching, we need to turn our scholarship toward this ordinary drama and to insist on its possibility. There is precedent for such an attention. It was in part thoughtful reflection on the nature and meaning of slavery in the 1850's that undergirded the abolitionist movement, and in part the scholarship of theologians, who created the social gospel movement, that undergirded the Progressive Era. At the very height of the most successful driving engine of the emergence of industrial capitalism, it was a Progressive movement that in my state, California, built the very hospital and social welfare structure now at risk. Children Hospital Oakland, like so many others was created, staffed dreamed up as the Baby Hospital by women reformers who insisted that their social activism accomplish tangible goals. The pasteurization of milk-ironically- was a political demand. Limits on industry, working conditions, profits--all were once won, and they could be again. In bioethics itself, the intellectual calls for informed consent, for advanced directives, and for confidentiality precede the clinical practice of the acts that we argue are theoretically necessary. In much of the debate around the issue of transplants, we need to remind that the system cannot be made fair at the end without a recognition that the access to medical care itself is deeply unjust. And when we speak of physician assisted suicide, we need to remind that it inevitably takes place in the context of a system that is structurally skewed, tilted away from the needs of the poor. We must frame our ethical reflection with this dark border, again and again: we must insist on it. Unless we trouble the discourse, our focus will be indefensibly narrow. But theory will not be enough. We must build a praxis of moral leadership as well.

2. We each must act ethically: act in such a way that extends the access we call for
The realities of embodiment and the nature of befalleness and fragility are a commonplace of our speech. We are paid to teach, write about, minister too, and research the clinical act, to comment on it, and in many cases, to recommend and evaluate its virtue. Yet how many of us have the privilege of touching and caring for the body of the stranger? Could we envision such a thing? That the very people that give speeches about health care volunteer to sit in a pediatric ward, or a nursing home and read to a real patient? If we are trustworthy, we might be allowed to braid the hair of the old woman, or feed the man that no one has time to feed by hand. We might, by our work, teach the medical students and administrators to act in this way as well. An hour a month, 12 hours a year. Less than the time obsessively reading the Internet, or watching TV.

Calling the ethical question in the world of politics and power is of necessity very difficult. Policy making and medicine are steeped in the tradition of the hierarchical relationship, the role of the ethicist nearly always a that of a curious outsider. Yet the prophetic tradition can tell us much about the imperative of the outsider who can see an alternate vision. Challenging the "is" with the "ought" leads us to fruitful understandings about the role of the alternate claim, leads us to challenge the givenness of the relationships as presented. Such language is neither safe nor endearing. That the historical place of the philosopher as well as the theologian was to remain the outsider can easily be forgotten. The first task of any theology is to remember that it is the brokenness of the world itself that calls us to the work of repair, it is to speak truth to power.

Linked to this alterity is the necessity for advocacy rather than neutrality on behalf of the most vulnerable. As the theological stance of the Biblical text is that of the outsider, the theological claim is for the stranger and the powerless that dwell in our gates. Extrapolated into the world of the clinic, this becomes, again, nearly dangerous, for it assumes an advocacy that in this era becomes named political. But to take seriously either the text or the history, or even the vaguely expressed "value" of religious thought means to take a partisan stand in the name of tzedakah, righteousness; this will of necessity have ramifications in the social world.

Because of the near hegemony of the assumption and power of autonomy in clinical ethics, it is important for religious leadership to rethink this as a premise for reform at all. A renewed approach would insist on the community of others that are dependent on, and dependable on as the basis for social action, questioning if voluntariness itself is either possible or the ground for human freedom. We have seen what is possible when citizens talk, face-to-face, in honest discourse. In Oregon, and in a thousand local collective projects, we can see have the world is transformed by an insistence on the possible. It is our role-if not our role, whose? --to insist on the prophetic vision, and to keep it alive in the face of cynicism and despair. It will be our insistence on one, clear, obtainable goal: the promise of universal access, a clarity of this as a first premise, that can re-center justice in this debate.

We are at the beginning of a new period in ethics and in politics. A new national commission on bioethics is in place, a second term Democrat in office. Much of what we will come to know as our collective history will be shaped in the next few years, much of what we will know as the American health care system will be shaped by the marketplace, and by the political process in the next four years. We must not abdicate leadership: the construction of the basis for the discourse will depend in large part, on what we have the courage, the clarity and the integrity to speak on.

Return to Conference Page