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.”

But let’s look at the numbers.  According to recent data from the American Medical Association, there are 921,904 physicians in the United States.  According to recent data from the Bureau of Labor Statistics, there are 2,505,000 registered nurses.

These millions of nurses have opinions on health reform. As a profession, they’re for it. Strongly for it.  The American Nurses Association takes the position that health care is a human right, and that the failure of a society to provide basic care to its citizens also fails nurses in their professional role. The ANA argues that a public option is the option that is most likely to support the professional integrity of nurses, as shifting the system’s focus toward access to prevention, chronic disease management, and primary care will do a better job of deploying one of the system’s limited resources: nurses themselves.

There is evidence that the current health care system’s well-documented incentives, rewarding quantity rather than quality, are particularly hard on nurses, who are responsible for hands-on care and so spend significant time with patients and families. Research on the problem of moral distress in health care – those situations in which a health care professional perceives that structural conditions are preventing the professional from acting in patients’ best interests or are forcing the professional to act against patients’ interests – suggests a connection between nurses’ professional integrity and how nurses are deployed.  According to one recent study comparing physicians’ and nurses’ perspectives on the care of dying patients in the ICU, 45% of nurses surveyed told investigators that they had quit, or considered quitting, a job due to moral distress.

There is a chronic shortage of nurses in the US.  If the current health care system’s incentives and the outcomes it produces are putting such pressure on nurses’ professional integrity that nurses consider leaving jobs – or the profession itself – a system oriented toward those interventions that require the highest nurse-to-patient ratios will not be sustainable on the basis of workforce as well as cost.

Nancy Berlinger is Deputy Director and a Research Scholar at The Hastings Center and teaches health care ethics in the Nursing Management, Policy, and Leadership graduate program at Yale School of Nursing.

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

To deem itself civilized, a society must protect the personal integrity of its citizens. Without such protection, the integrity of the society itself unravels as more and more effort goes into protecting individuals against the chicanery of their fellow citizens. Perhaps this is why Plato called integrity “the goodness of the ordinary citizen.”

If integrity is the characteristic value for the ordinary citizen, then it’s even more important for those whose social roles are defined primarily in terms of personal trust—doctors, lawyers, ministers, and teachers. Ordinary citizens cannot be healed—or provided with advocacy, spiritual counsel, or learning—without trust in these helping professions. (Unfortunately, history recounts how some physicians in every age have failed in the trustworthiness integral to medicine.) When such professions lack integrity, those who need their services will seek to protect themselves by assuring greater individual or public control over their relationships with these professions.

For a variety of reasons, this is what is happening in medicine in today’s complex societies—especially now that medicine’s power to alter human life is unprecedented. The result is that the center of gravity for individual decisions has shifted sharply away from the physician to the patient. That power shift has been reinforced in law (witness the burgeoning of malpractice lawsuits and insurance) and public policy as well. However, one may rightly ask: Is the good of the patient better served when he takes charge and directs his own care, or does the erosion of trust in the physician’s integrity put the patient in danger of being morally abandoned by the physician?

I contend that autonomy gives patients the moral right to reject care and protects their human dignity, but that patient autonomy need not interfere with the integrity of the physician—unless that right is expanded in such a way that patients can demand and even direct the details of clinical care. But if autonomy is understood as a right to demand care, it not only violates the integrity of the physician, it also endangers the care of the patient. For the benefit of both patient and doctor, patient autonomy must be understood in such a way that it can coexist with physician integrity.

The Nature of Integrity

Classically, personal integrity has been understood as a person’s commitment to live a moral life. The woman or man of integrity is honest, reliable, and without hypocrisy. He will admit mistakes, be remorseful, and accept the guilt that follows wrongdoing. The person of integrity fulfills the obligations of his private and his professional life, which are consistent with each other. He or she follows his conscience reliably and predictably. This pursuit is intrinsic to the person’s identity. To violate it is to violate that person’s humanity.

In the patient-physician relationship, both parties are entitled to protection of their personal integrity. However, the values, beliefs, and norms that comprise integrity may well be very different—and present different challenges—for doctor and patient. The physician needs to contend with an increasingly pluralistic society that can create pressure to compel him or her to accommodate patients’ differing religious, cultural, or personal beliefs. Also, the special nature of the patient-physician relationship (which derives from the fact that being sick and being healed are predicaments of special vulnerability), the growth of personal freedom of choice, the systematization of patient care, and the trend toward legal resolution of moral conflicts promise to increase the demand for personal and/or public control of the physician’s clinical decisions. All these factors encourage erosion of the physician’s personal integrity.

On the patient side, the sick or injured person—in a state of distress, pain, and suffering—is compelled to seek out and depend on the physician who professes to know how to help. The sick person and his family are asked to make choices among therapies, choose when life support may be discontinued, and decide how vigorously the terminally ill patient shall be treated. Throughout all this, the patient and family must trust the physician—or more likely a team of physicians, nurses, social workers, chaplains, etc.—each offering a slightly different rendition of the choices. Often, the physician and other caregivers are of different minds, and none may know what the best choice is. This uncertainty leads to lack of trust and may prompt the patient and family to go in desperation from Internet site to Internet site, and to nontraditional healers or marginal practitioners, in search of answers and of someone they think they can trust. Because, in the end, someone must be trusted.

The Empowerment of Autonomy

Vulnerable patients have always worried about whether their physicians possessed the competence they claimed and could be trusted to use it wisely and well. Until recently, however, they had little power to challenge the authority and sometimes authoritarianism of their physicians. Today, we live in a time of self-assertion. Autonomy, the most quoted principle of bioethics, empowers patients to challenge physicians’ knowledge and judgment. Patients now have the moral and legal rights to be informed and to give or withhold consent. Increasingly, patients and surrogates understand autonomy as empowering them to demand the care they want. Autonomy has expanded to the point that it conflicts with the physician’s moral or professional judgments.

The effect on the physician-patient relationship has been profound and complex. On the one hand, it has made that relationship more open, more adult, more transparent, and more attentive to the patient’s values and wishes. Some of the edge has been taken off physician arrogance and self-assurance, and the patient’s dignity as a person is better respected. These benefits have, however, been accompanied by trends that are dangerous to the patient and unjust to the integrity of physicians. For one thing, many physicians feel they are required to satisfy patient or family demands or be guilty of “paternalism”—the original moral sin of modern bioethics.

To avoid paternalism, some physicians and ethicists argue that physicians should be morally neutral.  Without sanctioning obvious harm, they should yield to patients who choose a less effective treatment, or a treatment of no proven use, or even one that violates the physician’s beliefs about what is right and good. Furthermore, some physicians believe that in the name of patient autonomy they must protect all confidences even when others may be harmed— for example, not reporting the incapacitated driver who is a public danger, or not revealing HIV infection to sexual partners. Others may take it as an act of beneficence to exaggerate the severity of disease or disability to increase the patient’s insurance coverage.

More subtle—but perhaps more important—is the physician’s growing reluctance to urge the course that he or she believes is preferable for this patient. Despite protestations that they know what is best for themselves, patients do make wrong choices. For the physician to suggest otherwise is to fail to respect the trust he has promised. Refusing to “bias” the patient’s choice by revealing one’s own choices—and perhaps persuading the patient to change his mind is not a true violation of autonomy. Rather, not to do so violates the principles of beneficence and trust. Beneficence does not equal “paternalism,” which relies on deception, treating the patient as a child, or coercing a choice and is itself maleficent. To cooperate in a wrong choice is complicity with what is wrong, and leaving the patient to decide difficult issues about which the physician himself may be uncertain is complicity in harm. Rather, what the patient needs is a physician who protects the moral right of patients to reject any or all treatment after the options have been frankly disclosed, and who will not use deception or ill-placed emphases to change the patient’s mind.

Overriding Physician Integrity

The desire for autonomy and unhindered freedom of choice has led to law and policy that override the physician’s objections to certain procedures, including abortion, assisted suicide, euthanasia, some methods of assisted reproduction, and embryonic stem cell research and therapy. This is not the place to argue the ethical issues of these practices. However, refusing to participate in them is essential to the moral and professional integrity of many physicians. Manipulating law and policy to make providing them mandatory by threatening loss of license or specialty certification is an assault on the very person of the objecting physician.

The trajectory of efforts to compel health professionals to provide care they find objectionable is toward relaxation or abolition of conscientious objection privileges. At this writing, there are organized attempts in the courts to block a new federal regulation that protects health workers who refuse to provide objectionable care. The ultimate goal seems to be to eliminate legal protections of conscientious objection entirely.

Policy Implications

As we approach another round of health care reform, the medical profession and the public must together find the balance that preserves both patient autonomy and physician integrity, for the benefit of both patients and physicians. Given how essential trust is in medical and health care encounters, we cannot trust physicians who shun responsibility, and we do not want patients abandoned in the midst of critical health and medical care decisions. For a morally viable relationship in a democratic society, both autonomy and integrity must be sacrosanct.

Edmund D. Pellegrino, MD, MACP, is professor emeritus of medicine and medical ethics at the Center for Clinical Bioethics at Georgetown University Medical Center. He also serves as chairman of the President’s Council on Bioethics.

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.