Click here for a full text transcript of the conversation.

Host Ira Flatow said in his introduction:

“Lost in the fray [of acronyms and actuarial tables] is the whole reason to have the health care debate in the first place…we’re going to try to reel it back in to talk about our values. What role do they play in shaping health care policy?”

Flatow noted that in its recent collection of essays, Connecting American Values with Health Reform, “The Hastings Center has tried to bring values back into the discussion.”

Len Nichols, health policy director at the New America Foundation, also participated in the show. Nichols, a health economist who wrote an essay on stewardship for the Hastings Center collection, said that passage of the final health care reform legislation is contingent on leadership that promotes shared values. “It is sometimes true is that those values seem to differ among political antagonists….but when you probe deeply and get in a dialogue you find out the values are actually shared,” Nichols said. “I believe most people share them and therefore we will end up with a bill that moves our country forward.”

The president emeritus of the Hastings Center opens his insightful essay with the observation that the American people’s faith in medical progress is boundless. In this short comment, I want to expand on his thoughts by reexamining the cardinal tenets of that faith, since they embody a set of values that distract us from building a society that promotes good health, an infinitely more difficult task than building a better sick care system.

What are the core values driving our belief in high-tech medicine? At their root, they are the values of good old-fashioned American individualism. This is the land of opportunity, where everyone has the God-given right to thrive and prosper. It’s also the land of the second chance, a place for the self-made and remade man — like President Ronald Reagan or Don Draper of the award-winning new drama “Mad Men.”

Death in this value system is not the end of a journey, but a rotten break. It’s the end of our chance to make a mark in the world, thus a fate to be avoided at all cost. Ray Kurzweil, the nonpareil Baby Boomer inventor, is the faith’s high priest, gobbling dozens of pills and supplements daily in his quest to remain on his “Fantastic Voyage: Live Long Enough to Live Forever,” to use the title of his 2005 book.

These values have been written into the laws that govern the delivery of health care, especially Medicare. That universal, single-payer system was designed to provide health care for our oldest and therefore most vulnerable citizens. But in setting up that system, Congress said the government (i.e., all of us) would pay for any medical intervention deemed “reasonable and necessary” to return a person to health, and it could never consider cost when making those determinations. How deeply ingrained are those values? So deeply ingrained that it was child’s play this past summer for right wing demagogues to stir up passionate outrage over nonexistent efforts to “pull the plug on grandma.”

The public religiously believes there will be a technological fix for the hundreds of diseases that may hit us as our bodies degenerate, and tithes accordingly. Any effort to limit prices for what must be paid for new technologies is met with cries from industry that it will stifle innovation. The taxpayers provide the seed corn for new technology by investing nearly $30 billion a year in basic research through the National Institutes of Health and other government health-related programs (this year supplemented with $10 billion in stimulus act funds).

But that’s just the start of the process. Those researchers are encouraged to patent their findings and start companies to bring their inventions to market, a reflection of another core American value — entrepreneurialism. The government refuses to limit prices so these companies will have “incentives” to leap the regulatory barriers to entry. And even when it invests in comparative effectiveness research to determine if these new inventions are any better than older interventions, the government will insist that those findings cannot be used to determine payment policy.

Where has this lead us? We have new anti-cancer drugs that cost $50,000 to $100,000 a year despite extending life a matter of weeks or months. We are helping pay to develop cameras-in-a-pill that can scope out our innards, the latest twist in imaging technology. We will collectively pay additional billions for a pill that can be taken once a day instead of twice a day. As I write, a hospital in suburban Chicago is building a $130 million cyclotron to deliver proton beam therapy to prostate cancer patients in the name of sparing them the life-altering side effects of incontinence and impotence that affects some patients given traditional interventions like surgery or radiation. Does it work any better? No one knows. Did these men need these interventions in the first place? For many, the answer is no. Will anyone tell them the alternatives, or challenge the erection of this new altar to high-tech medicine? Alas, the answer is no.

The results are as described by Callahan and others: half of the annual increase in the cost of our increasingly unaffordable health care system can be attributed to the proliferation of newer and always more expensive forms of care. What gets lost in that lament is that the return on this investment is on a downward spiral. Our life expectancy not only lags behind other advanced industrial countries, but every year it grows a little more slowly.

Why has our technological faith failed us? The answer is simple. Increased longevity has nothing to do with extending the natural human lifespan. Societies increase longevity by eliminating premature mortality. Technology is one means to that end, but it is probably the least efficient  method. It’s definitely the most expensive.

The dramatic increases in longevity we saw in the early 20th century was largely the result of better sanitation that reduced infectious disease deaths. The gains of the postwar era were largely the result of better housing, better heating, less burdensome work, and more leisure — each a product of an increasingly wealthier society. In more recent years, cleaner air, less smoking, and better diets have played a bigger role than medical interventions in extending life.

That’s not to say that medical technology hasn’t helped. It can and does save lives. It can even perform miracles in some cases. But the truth is that investment in technology will never bring the U.S. up to the longevity standards of other advanced industrial countries. Why? Because our misplaced faith has distracted us from tackling the real and enduring determinants of ill-health in our society– poverty, income inequality, social insecurity, and status anxiety, the hallmarks of our increasingly dysfunctional social order. There’s a vast literature on the social determinants of health. Alas, it has gone unnoticed and unremarked in the current health care reform debate.

Rebuild our health care delivery and health insurance systems? It’s a necessary, even laudable goal. But it’s not sufficient if we want to improve our population’s health. Until our values allow us to put that goal to front and center, we’ll be forever doomed to disappointment from the poor returns from our massive investment in high-tech medicine.

This essay appears in the Hastings Center’s Connecting American Values with Health Reform Collection, available here.

Few dispute the need for health care reform in America. Two problems—access and cost—attract the most commentary, and for good reasons. The ranks of uninsured Americans, which have increased annually for the last six years, are likely to reach 50 million in this economic downturn, and health care expenditures are predicted to top $2.5 trillion in 2009. Both problems are unsustainable features of American health care. But these problems share company with a third that has gone largely overlooked. Our health system, if it can be so called, is not designed to produce health. Indeed, health care is but one determinant of health, and by some measures it is a relatively minor one. Despite the trillions spent on medical services, the United States ranks poorly on key measures of health. For example, according to 2004 World Health Association data, the United States ranks forty-sixth in average life expectancy out of 192 nations.

Addressing this gap in our national health reform debate requires a fundamental reorientation in our thinking about health care and its relationship to health. Reform needs to include measures that will help keep people healthy and better manage their illnesses should they fall ill. We should standardize insurance benefits, refocus services on primary care, reward the management and prevention of chronic disease, create information systems that track patient populations, expand community health centers. We should also assess (and act on) the health impact of policies in sectors other than health care, such as taxation, agriculture, housing, urban planning, transportation, and education. Such reforms will not only produce a healthier nation but also reduce the stark health inequalities that separate Americans who are better off from those who are worse off.

Health and Value

This perspective on health system reform turns on a value rarely identified, defined, or defended in explicit terms. That value is health itself. Health is thought to be a good in several respects. First, people may value health because it contributes directly to their sense of well-being; in this sense, it is an intrinsic good—a good that people enjoy for itself. But even if people do not consciously appreciate their health when they have it, losing it will make them aware that they rely on some level of it to pursue their interests and to act on their plans. Health, in this sense, is also an instrumental good that enables people to manage and control their lives. Health is also a collective social good that can contribute to a nation’s productivity and reduce absenteeism and health care costs.

Health may seem too simple an idea to define or too obvious a value to defend in a debate over health system reform. Questions abound, however, about how to define and produce it and how to balance it with other values. Is health an expansive idea that relates to human well-being, or a narrow idea that relates to bodily function? The World Health Organization defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” Critics charge that the WHO account is too vague and reduces all dimensions of well-being to health; they define health more narrowly as the absence of disease. But both approaches involve value judgments that are likely to be contentious. WHO’s definition requires well-developed ideas about the good life; the narrower, biomedical constructs require consensus on notions such as what counts as normal functioning and what counts as suffering. Still other definitional complexities and controversies exist. But no matter how we measure health, the United States compares poorly to other wealthy countries and even to some middle- and low-income countries.

While we need not agree on a particular concept of health in order to agree that we are an unhealthy nation, how we conceive of health has implications for how we think about improving it. Because the biomedical conceptions of health rest on conceptions of disease and disability, they run the risk of channeling our collective attention and action toward medical services that respond to disease and disability—and away from broader social systems that prevent disease and promote health. Universal access to timely, high-quality primary care certainly would help to improve health outcomes and reduce health inequalities. But even with universal coverage, disparities in disease and injury will remain because it takes more than health care to ensure health. For example, medical services make a mere 10 to 15 percent contribution to reducing premature death. In addition, factors that contribute to health include health-related behaviors, genes, and social, economic, and environmental conditions.

The pursuit of health equity in this political culture will have to negotiate a number of American values likely to supply resistance. One source of resistance will be those who view such policies as an infringement on individual liberty. The precise meaning of liberty may take slightly different forms, depending on the different objections. Policies that ban products (such as trans fats) or that regulate activities (such as driving without a seat belt) may be said to interfere with individuals’ freedom of choice. Others may take aim at government programs and the taxes they entail, based on a principled rejection of the role of government, save its activities related to national defense, law enforcement, and judicial institutions that protect individual rights. These positions share a concern with what people are free from and may find common cause with a second plank of resistance to any robust health equity agenda—the view of health as individual responsibility. Individuals, not the state, are responsible for improving their health, and if they fail at that, it is individuals who must shoulder the consequences.

Of course, everyone knows of people who have managed, even against great odds, to change deeply ingrained ways of living and improve their health. But many people don’t manage that, and members of socioeconomically marginalized and minority groups are disproportionately among those who maintain poor health habits. This fact should cause us to rethink and reframe the question of responsibility and how we think about liberty. The significance of class and race for health habits does not suggest that members of socially disadvantaged groups are all choosing in lockstep; rather, it suggests that their choices are systematically constrained by living, learning, and working conditions that can limit people’s choices and perhaps the freedom expressed in those choices. Policies that remake these social conditions—for example, ensuring that everyone has a nearby grocery store that sells fresh produce, a primary care physician, a pharmacy, and safe venues for recreation and social gatherings—can enhance people’s freedom to make healthier choices. So some forms of collective action can enhance people’s liberty.

That these social conditions are often the product of widely endorsed public policies suggests that the call for personal responsibility should be accompanied by an awakening of our sense of shared responsibility. The idea is not foreign to U.S. political culture; indeed, it seems to be at the center of our new president’s philosophy. President Barack Obama has called for a “new era of responsibility” that makes demands not just of individuals, but also of families, communities, and society at large. This big-tent conception of responsibility should be directed at promoting health for all.

Policy Implications

The social determinants of health are particularly salient in this era of chronic disease, whose causes can be traced to the conditions in which we grow up, live, learn, work, and play. Health habits related to diet, exercise, and tobacco use make an indisputable contribution to the onset and progression of chronic diseases and help explain some of the disproportionate disease burden among lower socioeconomic groups. But health habits do not explain all of it. Low socioeconomic status itself contributes to premature mortality and excess morbidity. Researchers do not yet know which markers of class exert the most profound influence on health, but low educational attainment, low-wage jobs, poor-quality housing, and polluted and dangerous neighborhoods, along with the stress and social isolation these experiences may induce, all plainly play a role. The vagaries associated with being poor or near poor exact an especially heavy toll on the health and development of children, often with lifelong effects.

If the organizing principle of health reform is the production and the fair distribution of health, then we will need to rethink what a health system is. What might such a system look like and what sort of policies would it entail? Promising policies and programs have been recommended, and some are already being implemented in states and cities around the country. These interventions include measures aimed at several different levels. Some focus on neighborhood conditions: they seek to improve housing stock, create safe areas for exercise, and enhance the food supply (such as by banning trans fats and by supporting farmers’ markets, for example). Other interventions focus on at-risk families and children, by providing income supports, securing nutrition, and enriching educational environments and opportunities. Yet other possible interventions promote educational attainment and improve work conditions and benefits for adults. These measures cannot guarantee health for all. But they can promote a fair opportunity for health for all. And that is a very American value.

Erika Blacksher, PhD, is a research scholar at The Hastings Center and a former Robert Wood Johnson Health and Society Scholar at Columbia University.

This is the introductory essay in the Hastings Center’s Connecting American Values with Health Reform Collection, available here.

The atmosphere was tense. Representatives of the insurance industry were huddled in one corner.  The other members of the Task Force on Genetic Information and Insurance, mostly academics and consumer representatives, were bunched across the room. As chair of the task force, I was in the middle, trying to make sense of the disagreement, which was growing more intense by the minute.

Our mandate was to provide recommendations about what health insurers should and should not do with genetic information. This was the early 1990s; there wasn’t much information available about an individual’s genes, but the avalanche of genetic information was gathering strength. The first few pebbles had arrived recently, and ever larger ones, such as the tests for genes linked to breast and ovarian cancer, would appear soon. We had time—not a lot, but some—to plan for how private health insurers would deal with information about our genetic risks for diseases, from the rare and inexorable progression of Huntington’s disease to far more common ones such as Parkinson’s, diabetes, and heart disease. Health insurers were accustomed to shaping policies according to the risks people presented. If someone with cancer was like a house afire, someone with a genetic risk of cancer was a house with a smoldering pile of rags in the corner.

The standoff in that room, though, was puzzling. We asked the insurers if they believed that everyone should have access to insurance whatever their risks: Yes, they agreed, everyone should have access to insurance. So, they were in favor of universal access, right? No, they adamantly insisted, universal access would be the death of the  industry. Finally, we understood what frightened them: to insurers, universal access meant that people could sail along without any insurance coverage until the day they became ill, when they could march into the insurer’s offices and demand to be covered.

That’s not what we had in mind, we explained. Everyone should have to pay their fair share and, when they needed care, their health insurance would be there to cover the cost. We described it as universal participation.  Fine, said the insurers, we can agree with that.

Among the lessons I learned from chairing the task force (including: Don’t fly from England to San Francisco and expect to control a contentious meeting), one stands out for this collection of provocative essays: understanding what’s at stake in a public policy debate is as vital as it can be elusive.

Connecting American Values with Health Reform is our effort to identify what is at stake amidst the swirling confusion of proposals for delivery systems, financing, cost control, and other details necessary for any practical reform. These details, though, are instruments carrying with them the impedimenta of history, habit, and interests.  To see things afresh, it helps to return to foundational questions: What do we want health reform to accomplish? What values should our institutions and practices be built upon, embody, and achieve?

The language of values has another virtue: Unlike health policy mavens, most Americans are baffled by the alphabet soup of program acronyms, economic models, and the difference between cost-benefit and cost-effectiveness analyses. Heck, most of us can’t explain the difference between Medicare and Medicaid. But we all understand what values are, and we can defend our preferences among them. Which leads to another reason The Hastings Center undertook this project.

Values can be wielded like cudgels to batter your opponents. That, unfortunately, has been all too common in recent political discourse. But values worth taking seriously — including all the values addressed in this collection of essays – are far more subtle, multifaceted, and interesting ideas that can cross political boundaries. Liberty, Bruce Jennings reminds us in an echo of Isaiah Berlin’s classic formulation, includes both freedom from and freedom to — and each of those meanings of liberty deserves attention in health reform. Liberty can mean the freedom from the imposition of a particular health plan and physicians; but it also demands a health care system that does not deny a would-be entrepreneur the freedom to pursue her vision, a freedom not available to the parent of a child with diabetes, for whom health insurance would be unaffordable outside the protective umbrella of a large group policy.

We chose the authors of these essays to represent a broad spectrum of beliefs. We assigned each of them a particular value to address, but we did not tell them what to say about it, other than to display the complexity residing within each value and spell out the policy implications of taking that value seriously for American health reform.

In reading these essays, I found moments of great illumination and insight along with occasional areas of disagreement; familiar ideas displayed in new and revealing aspects; new arguments, distinctions, and concepts. I was provoked, enlightened, and occasionally surprised. I hope that other readers will have a similar experience.

Most of all, I came away convinced that values are the beating heart of health reform, that these authors have begun a marvelous conversation about those values, and that the implications for American health reform are concrete and vitally important. A handful of ideas stand out.

First, simplistic understandings of values are deceptive and harmful to private insight and public discourse. Liberty, properly understood, is not the opposite of equality; justice, not the opposite of liberty; and responsibility, both personal and social, is crucial to the full realization of liberty and justice. Efficiency, an instrumental value rather than an end in itself, is intimately related to quality, solidarity, stewardship, and justice.  Core American values, rather than existing in ineluctable tension with one another, form a sturdy, mutually reinforcing foundation for health reform.

Second, when we acknowledge, as we must, that our goal is health, we are obliged to think much more broadly than our patchwork system of health care. Healthy children, healthy adults, and healthy communities are the outcome of many factors—from decent housing and safe areas for play and exercise to good jobs and schools.  Health care, crucial for episodes of acute illness and for the care of chronic diseases, is a significant but not dominant determinant of a community’s health. As responsible stewards of community resources, we should invest our finite public funds according to where they will do the most good. At times the best investment for health may be in education, job creation, or environmental protections, not in health care.

Third, the practice of individual underwriting in health insurance—making it harder to get the sicker you are — should be given a prompt funeral and buried with a stake through its heart. A concept such as actuarial fairness — which makes good moral sense in commercial insurance where risks are voluntary and the losses measured in money — has no place in deciding who gets access to the health care they need.

Fourth, efficiency and communal responsibility are essential if we are to have an affordable, effective, and sustainable health care system. This will require, at a minimum, systematically studying and improving the quality
and effectiveness of what we do in the name of health care. It will also require restructuring incentives so that providers are rewarded for results rather than for the numbers of procedures or tests they perform. There is good evidence that such changes would also lead to a higher quality of care.

Finally, the concept the task force developed more than fifteen years ago—universal participation—may be one whose time has finally come. The core idea is simple enough: everyone should be responsible for participating in whatever way is appropriate; when anyone needs health care that is reasonably effective and not financially ruinous, the care will be there for them. I was delighted to find the concept, if not the term, endorsed so often in these essays.

Whatever combination of private and public programs we choose, it’s a good time to connect American values with American health reform.

Thomas H. Murray is the President of the Hastings Center.