Asserting a "right" is a powerful statement in American political rhetoric. In this country, medicine has recognized patients' rights for over 150 years.1 As early as 1886 there was a proposal to "draw up . . . a Bill of Rights which shall secure patients from any injustice from the votaries of science."2 But it was not until almost a century later, in 1972, that the House of Delegates of the American Hospital Association (AHA) first formulated an official "Patients' Bill of Rights."3
If US patients are so well endowed with rights, why has a Patients' Bill of Rights been promoted by the President and debated in Congress? Observers from nations that provide universal health insurance for their citizens might reasonably presume that the additional "right" sought was the right to health care. But it was not a general right to health care that was created in the Patients' Bill of Rights by an executive order of the President in February 1998,4 nor is it a general right to health care that is being endorsed by several prominent advocacy groups. The right being established is the right of access to emergency health care.5
This country's frontier heritage is one of independence rather than interdependence. Communal assistance is acceptable in the United States during emergencies so as to assist individuals to reassert their independence. It is this extraordinary value that US citizens place on independence that leads them to insist on a right to emergency health care: a form of health care that enables them to reassert their independence.
The 1716 New York Midwives Oath, the earliest formulation of medical ethics in the United States, unequivocally states a midwife's obligation "to help any woman in labor, whether she be poor or rich . . . in time of necessity."6 A similar sentiment was expressed a half century later in the constitution of the first permanent US medical society, which stipulated that physicians must "always most readily and cheerfully assist gratis . . . the distressed poor."7 Medical professionals in colonial American society considered themselves obligated to provide care to those in "distress," or in "time of necessity," irrespective of a patient's ability to pay.
The foundational document of US medical ethics, the Code of Ethics adopted by the American Medical Association at its founding meeting in 1847, reinforces this obligation. It stipulates that the first and preeminent duty of a physician is to "come when called," that is, to attend to patients during an acute illness or an emergency. In the prologue to the Code duties and rights are held to be correlative. This implies that patients have a correlative right to be attended to in emergencies—even "when pestilence prevails," for physicians also have a "duty to face the danger, and to continue their labors for the alleviation of suffering, even at the jeopardy of their own lives."8
The moral tradition formalized in these earlier codes of medical ethics continues to this day: like their 18th-century counterparts, emergency department nurses and physicians still see everyone "in time of need," regardless of the patient's ability to pay. A patient's right to emergency care is thus the most enduring right in US medical ethics.
Managed care practices challenge the fundamental right to be seen by a doctor or nurse "in time of need." Evidence of this was apparent in the cases cited in Congress to support the Patients' Bill of Rights. For example, a father, 45 years of age, has a myocardial infarction requiring emergency surgery unavailable in his local hospital. Yet his health maintenance organization (HMO) declines to approve out-of-town treatment. Eventually they relent, but the man dies while awaiting surgery. A mother, 55 years of age, discovers large bruises on her body while vacationing in Hawaii. Hawaiian emergency department doctors diagnose aplastic anemia and recommend immediate treatment. Her HMO insists that she return home for assessment. They decline payment for a "medivac." Nine days later she dies, succumbing, in her weakened condition, to a fungal infection transmitted by the air recirculated on a commercial jet. In both cases managed care organizations refused to treat emergencies as emergencies, attempting instead to substitute ordinary care for emergency care; that is, they refused to recognized the patient's right to emergency care.
These tales of death and delay were paraded before Congress to assert the need to protect patients' rights to acute and emergency care, to appropriate care, and to continuity of care. The Patients' Bill of Rights reasserts patients' legal right to emergency treatment without prior authorization and defines "emergency" as "a medical condition manifesting itself by acute symptoms of sufficient severity . . . that a prudent layperson, who possesses an average knowledge of health and medicine," would believe it needs immediate treatment.9
How did managed care organizations place themselves in the unenviable position of challenging patients' rights? The answer involves ethics and law. Legally, the Federal Insurance Retirement Income Security Act of 1972 exempts managed care organizations from lawsuits under state malpractice laws. Therefore, unlike doctors and nurses, managed care administrators cannot easily be sued for denying patients' care, not even in cases as outrageous as those presented to Congress.
Ethically, the issue is more complex. Medical ethics in the United States has traditionally been conceptualized in terms of physicians' duties and patients' rights. Managed care administrators, however, tend to conceptualize their obligations in terms of either stakeholder analysis or the utilitarian ethic that predominates in public health medicine.
Stakeholder analysis is a common form of business ethics that was developed as a theoretical framework to extend the concept of managerial responsibility beyond the boardroom, so that it encompassed communities, employees, and customers, as well as shareholders.10 When applied in the context of managing medical care, stakeholder analysis inadvertently, but inescapably, demotes patients from the position of primacy they enjoy in traditional medical ethics. In a stakeholder analysis patients' interests become just one among many that must be balanced against those of (1) the managed care organization, which must retain its competitiveness in the market, (2) employers and other third-party payers, who have an interest in containing their costs, and (3) society at large, which seeks to minimize the number of uninsured by containing the cost of employer-financed health insurance. Additionally, in for-profit managed care organizations, (4) shareholders are stakeholders with a right to a reasonable return on their investment.
By 1990, when managed care emerged as the dominant form of employer-financed health care in the United States,11 employees found themselves unknowingly subject to ethical norms that had not been customary in the clinical practice of medicine. The examples paraded by the Democrats are cases in point. From the perspective of traditional medical ethics, these "horror stories" demonstrate the moral callousness of managed care. From the perspective of a stakeholder or by a utilitarian analysis, however, these cases, although unfortunate, are neither unfair nor unethical. Managers who accept the ethos of managed care will feel morally bound (either to multiple stakeholders and/or to maximize the greatest good) to manage health resources efficiently. Efficient resource utilization requires enforcing rules that may have unfortunate consequences for some individuals—such as those cited in Congress.
If the above analysis is correct, then what is at issue in the debate over patients' rights is the very core of US medical ethics in the 21st century. From the Hippocratic oath to the bioethics revolution, the patient has traditionally been the central focus of medical ethics. Managed care organizations, however, operate from within ethical frameworks that countenance practices that erode the centrality of patients' needs. The historic shift to managed care has thus generated a parallel moral paradigm shift that fundamentally challenges medical ethics and the patient-physician relationship, as they have traditionally been understood.
The question before us is whether we should sustain traditional medical ethics or adopt the new ethic of medicine implicitly embraced by managed care organizations. Those who believe that the individual patient and the patient-physician relationship is properly the focus of medicine and of medical ethics will need to find a mechanism that can successfully embed the values of traditional medical ethics within the ethos of managed care medicine. The idea of patients' rights provides a well-tested mechanism for accomplishing this. Rights act as a "side constraint" on political and economic calculation as well as moral reasoning.12 Rights can stay the calculations of the utilitarian and stakeholder calculus, reasserting the centrality of the patient-physician relationship even within the larger framework of stakeholder and utilitarian ethics.
If one believes in the centrality of the patient-physician relationship, one ought to favor the creation of a framework of patients' rights for individuals enrolled in managed care. Thus, health care professionals should champion the idea of patients' rights in their professional organizations and in political fora as well. For almost 212 millennia, patients and physicians have been well served by an ethic that focused on the needs of the individual. It would be tragic if this ethic were inadvertently jettisoned in the shift from fee-for-service medicine to managed care.
Baker R. American Independence and the Right to Emergency Care. JAMA. 1999;281(9):859-860. doi:10.1001/jama.281.9.859-JMS0303-5-1