Personal responsibility is the cornerstone of morality, and the building of every temple of modern bioethics has begun with that first stone. Similarly, disease prevention and health promotion are the foundations of managed care, and those concepts depend on people taking responsibility for their own health. In the 1990s, this means special attention to common, expensive, too often lethal and often preventable conditions — like tobacco dependence and obesity.
Writing in JAMA three years ago, McGinnis and Foege showed that smoking — not coronary disease or neoplasms — caused death in 33 percent of the cases they reviewed, more than any other factor. High-fat/low-carbohydrate-and-fiber diets and sedentary activity levels were second at 19 percent. Alcohol and drug abuse, firearms, motor vehicle accidents and sexual behavior were not far behind.
Many observers hope that significant behavioral change has begun. Many managed care organizations hope to increase efficiency with disease management programs. Employers hope the popularity of wellness programs will result in lower costs. Physicians hope for a preventive intervention for sedentary Big Mac addicts that is as effective as first-dollar coronary artery bypass graft coverage.
Hope is important, but it is not always enough to pull patients through. How important to managed care ethics is personal responsibility? Should patients be held accountable for "risky behavior"? Or is this violating civil liberties, and patients' rights to choose, or "blaming the victim"? After all, patients are sick people, and may have illness for which genes, heredity, environment, family, or fate is actually responsible.
Why is more accountability needed?
Three reasons: education, independence and equality.
With multimedia, from compact disc-containing books to interactive videos, from faxback technology and popular television to the Internet, the single most important source of a patient's information about his or her care has changed from medicine to the media.
Patients are less dependent upon physicians for knowledge, and have become more autonomous decision-makers over the past 50 years. Yet their responsibility in the doctor-patient relationship has not increased proportionately.
Sociologist Talcott Parsons described the patient's "sick role" in the late 1940s — dependent, fearful, trusting in science. The patient's physician was learned, without conflict and generally always available to direct the patient's care. The patient did his or her best to get better. Care was inexpensive by today's standards, and bartering was usually still possible in a pinch.
By contrast, many 1990s patients dislike the idea of orders from an authority, and are accustomed to more egalitarian relationships with their health care providers. Patients are well aware of physicians' divided loyalties, too-limited schedules and near top-of-the-heap incomes. Often reasonably well when they negotiate for and purchase health care, patients and employers try to make hard-headed decisions about what they can afford, in part because care is so expensive and not the only thing of value.
There are other reasons for greater accountability. First is population-based health: Resources saved by one individual can be used to benefit another in the population. Second is better communication. Ungagging physicians to discuss cost issues related to lifestyle changes would help both doctors and patients to discuss patient values. Third is adequate access; managed care patients no longer need physicians to provide access, as the managed care organization provides that. Fourth is demonstrated cost-effectiveness and patient satisfaction, from self-help books to leading corporate wellness programs.
Why, on the other hand, is more patient accountability wrongheaded?
Three reasons: discrimination, privacy and uncertainty.
Picking on alcohol and drug users and smokers is arbitrary and discriminatory. What about chronic skiers who break a leg one year and return to Vail the next? Or motorcyclists who ride with only tresses covering their naked heads across Montana's speedlimitless beauty? Or balloonists who then try hang-gliding or bungee-jumping? Why should one group be held accountable for their injuries and potential injuries, and another be held up as just adventurous?
Abusing alcohol and drugs, overeating, underexercising and skiing are not medical behaviors. They are, in most cases, probably unrelated to taking medication or showing up for office visits. Instead, they represent important value choices that people in this country should be free to make. To control these activities with rules or incentives would be parental and paternalistic. Physicians are not charged with being enforcers of social policy, but instead are compassionate advocates who put a particular patient, in the office now, before personal or societal interest.
Scientific information about diet in particular seems to change every month. The USDA creates and then retracts and then reissues a dietary Pyramid, something lots of people think went out with the Egyptians. It still allows 30 percent of calories from fat. The new fat substitute Olestra may re-invent potato chips even as it sucks folate and fluids from your system, not to mention mouth-feel from your palate. And now there's leptin, which drains body weight from mice, and should be ready for FDA approval within 10 years. So why add 50 grams of fiber to your diet when the recommendation to do so could change any moment, and you may be able to take a fat pill?
There are other reasons here, too. First, patients are not really autonomous, even if they are better educated. More information can't always overcome genetics, luck and culture. Second, lifestyle behaviors are notoriously stubborn: Only one of 20 obese people who lose what they want keeps it off for five years. Third, managed care organizations are more interested in short-term paybacks than long-term investments. And because patients change plans so often, any given managed care organization may be out of business and into Brazil by the time a comprehensive wellness programs pays off.
Whichever side of the argument you find stronger, the issue of patient accountability is here to stay. The real question is one of reins or fences — incentives or rules — and who constructs them, and why. Physicians will seek new ways to align patient incentives with their own. In that way, perhaps, choice and information can reduce not only health care costs but also patient vulnerability.