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.

Writing in 1780 to his friend Joseph Priestly, the British scientist, Benjamin Franklin said that with an increase in the “power of man over matter, . . . All diseases may be prevented or cured, not excepting that of old age.” The great American Revolutionary War physician, Benjamin Rush, was no less utopian in prophesying that there will someday be a “knowledge of antidotes to those diseases that are thought to be incurable.”

A powerful faith in science as a basic human value, matched by an equally strong belief in medical progress, has been a central feature of American culture from the start.  Although medical research was slow in gaining momentum, by the second half of the nineteenth century it was well under way, and it moved forward thereafter at a rapid pace. The establishment of the National Institutes of Health just before World War II, and its steady growth since then, has been a testimony to an unprecedented congressional bipartisanship and public enthusiasm. Some 80 percent of Americans say they support medical research as a high-priority national goal, and the NIH’s $28 billion annual budget shows it.

The fruits of medical progress—and its first cousin, technological innovation—are not hard to discern. From the near-conquest of infectious diseases by means of vaccines, antibiotics, and antivirals, to a reduction of deaths from heart disease and many other lethal diseases and a resulting increase in life expectancy for almost everyone, it is a faith that has been well rewarded. We are as a nation healthier and more prosperous because of it.

Yet it has been, as a value, remarkably little explored, as if its patent benefits put it beyond all inquiry. Any ethical interest has focused almost exclusively on byproducts of the drive for progress, such as human subject protection in clinical trials and, lately, the use of embryos for research purposes. Given the massive role of research as part of our economic, medical, and political life, there is a good deal more that can be said about the value of progress as a whole, and a number of issues worth some intense inquiry. Five that have policy implications have caught my eye.

There is, first, the role of research and technological innovation as a main driver of health care costs. Any number of economic studies and the Congressional Budget Office have identified either new technologies or the intensified use of older ones as responsible for about 50 percent of annual cost increases, now averaging an unsustainable 7 percent a year. Our technological benefit is turning into our economic bane. Though only a minority of medical technologies have been assessed for efficacy and a good cost-benefit ratio, they are the front line of American health care: doctors are trained and well paid to use them, industry makes billions of dollars selling them (and resists any cost controls), and the public loves and expects them. There is, moreover, a profound ambivalence among many economists about technology. They recognize it as the leading economic problem for American health care, but they are fearful of any moves that might harm technological innovation.

There is, second, the comparative role of medical care and background social conditions in improving health. Any number of technical estimates over the years trace some 60 percent of improvements in health status to socioeconomic factors, particularly education and income. Medical care, then, accounts for no more than 40 percent in general— though the health status of the elderly is an exception, and medical technology in particular accounts for their improved health in recent decades. One could make a good case that improvements in education and job creation could be a better use of limited funds than better medical care. Social and economic progress may be the kind we most need, and that kind of progress would have double and even triple benefits beyond improved health; a good education, for example, improves both individual health and the economic well-being of society.

Third, if throwing technology at illness in the name of progress is an increasingly expensive and economically destructive way to go, what might a more sensible idea of progress be? My vote would be to aim for a better balance between cure-oriented and care-oriented medicine. The emergence of chronic disease as the most difficult and expensive kind to manage is demonstrating the failure of cure-oriented medicine to do away with the nation’s major killers, which are heart disease and cancer. Patients must now learn, with medical help, how to live with and probably die with their condition. By “careoriented medicine,” I mean not just good palliative care, but well-coordinated medical assistance to manage disease, further coordinated with social and family help.

Fourth, much has been made for years of the power of disease prevention as the best way to save money, to save lives, and to improve our health. Those are at best half-truths. In the end, sickness and death can be forestalled but not conquered, the costs deferred but not eliminated. The only likely way to assure a good outcome for prevention programs is to make clear to the public that high-cost technologies will be severely limited when the final illness arrives. The carrot is that prevention will give us a longer life with a higher quality. The stick will be the message that you should take care of yourself and not expect medicine to save you when your time runs out—that is no longer an option.

Fifth, Americans already live, on average, a long life of seventy-seven years. There is no need to go out of our way to chase life extension, or the denial of death, as the sine qua non of medical progress. We need progress in removing the health disparities that keep millions from reaching seventy-seven, in reducing the social and economic burden of disease, and in coping with newly emergent conditions (like obesity and asthma in children) and medical threats (such as antibiotic resistance). The NIH has always given priority to the most lethal diseases, with heart disease at the top of the list. Increasingly, I would argue, our priority should be the (now) slow way those diseases kill us, as well as the diseases and conditions that don’t kill us (or not quickly) but make life a misery. Poor mental health, severe arthritis, frailty in the old, deafness and vision impairment, and Parkinson’s and Alzheimer’s disease fall into that latter category.

I mention, finally, two other places where progress is needed. One of them is to change the ratio of primary care physicians to subspecialists. Our ratio is now sliding below 20 percent for the former and rising to close to 80 percent for the latter. A failure to change that ratio (it is 50/50 in Europe) will make it almost impossible to pursue the new goals I have identified. The other is to bring the drug and device industries under greater economic and medical control. Their idea of progress is an expensive pill or device that will meet medical needs, and—via the route of medicalizing every seen and unseen ache, pain, and travail—turn all desires for surcease into insistent needs.

Policy Implications

Daniel Callahan, PhD, is senior research scholar and president emeritus of The Hastings Center, which he cofounded in 1969.

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.